The Cookie Jar

If I close my eyes...

2010-07-01T23:53:00.000-04:00

I don't see the little label on my bookmarks that says "The Cookie Jar." I don't click on it. I just ignore it. I'm getting good at it. I sometimes don't see it for a week or more, but then it sneaks up...and peeks at me. It reminds me that I have to check to see if everyone is okay.

I think alot about why I don't write here too often. Maybe it's because I'm avoiding the past and trying to put the cancer drama out of my head. Or maybe it's because this blog was such a lifesaver throughout the whole process. Maybe I avoid this whole blog thing because I'm afraid to see what is going on with my virtual sisters in BC.

It's probably a mix of things.

I can't write my book. I treat it like my blog. I'm ignoring it because it upsets me. I really should write it cause justice would allow someone to make money off the hell I've been through.

Markers are clean here so I have no worries. My kids are healthy, my husband is great. Mom is doing great and so is Dad.

Maybe I'm still rebelling against the mental part of this whole thing...

Happy Mother's Day!

2010-05-09T09:00:00.000-04:00

Doesn't cancer make Mother's Day more poignant?

Hope all of you have a wonderful day filled with love, laughter and peace.

Hugs,
Sharon

Mouth Ulcer Tip - This really works!!!

2010-04-08T23:37:00.000-04:00

Hi everyone!

I don't know how much you all remember about my Mom but she's going through Avastin treatment every 3 weeks. This is a tumor targeted therapy and is considerably milder than the heavy duty "platin" type of chemo she was on before. The side effects are minimal and seem to be limited to trembling in the hands and mouth pain. It starts about 4 days after treatment and peaks at about 10 days. Then starts to decline as she approaches another treatment.

She is having considerable mouth pain so I decided to try the "all natural" route. The prescription mouthwash tastes terrible in addition to simply numbing the mouth - not fun at all. Seemed to me that healing the ulcers was the way to go. I suspected about a month ago that she had them under the surface inside her cheeks. The last round of chemo had the ulcer beginning to erupt (Dad checked inside her mouth with a flashlight.)

So bottom line is this: There's an all-natural remedy that WORKS. It WORKS!! This treatment had reduced Mom's pain, it's easier to brush now, she's sleeping, the swelling inside her cheeks is gone AND she's more comfortable.

Visit a GNC or herbal medicine shop and pick up some Liquid Aloe. NO you can't just chomp on a chunk of the Aloe plant sitting on your hall table. Get some honey as well to ease the bitter taste. Get a small cup and pour a few tablespoons of aloe juice into the cup. Add a squirt of honey and a small amount of water and stir it up (amounts can differ depending on how much mouthwash you need). Take a swig and swish it around for 30 seconds. Spit it out and do it again with the remaining mixture. DO NOT SWALLOW IT!!! (You can adjust the measurements as you see fit - it doesn't taste good but it works!)

3 times a day and you should feel a lessening in your discomfort in 24 to 48 hours.

This is what I've been doing

2010-04-03T08:02:00.000-04:00

I write for a number of sites around the internet. The conglomeration of writing covers many topics. I decided to start another blog with my latest group of articles on gardening. Niche blogging is fun and it gives me a break (and a treat!) from creating content for EHow, GardenGuides, Livestrong and some of the other sites that I typically write for. It's nice to be my own editor and to write in the first person.

If you're interested, check out my new blog HERE The title may be Maryland Gardening but most of my tips apply to every type of garden as well as good planting practices. This blog focuses on an organic approach instead of pumping chemicals into the soil.

Milestones

2010-03-26T00:29:00.002-04:00

I can put my hair in a bun. A very very very tiny bun but it's a bun.

With the help of 16 bobby pins :0)

Grief

2010-03-16T19:05:00.003-04:00

This is the diagnosis.

Warning label

2010-03-12T12:23:00.004-05:00

I've avoided this blog and in fact, haven't opened it in well over a month. Why? Coping with all of this being over and moving on hasn't been easy. Each day is a private struggle. So private that even my husband doesn't know the depths of how much this bothers me.

What ifs plague a cancer survivor but then, most of you know that. The hardest part is that little things now strike at the very heart of me that never did before. I see a puppy and I'm brought to tears because I want one so bad. But will I see it grow? A child on TV. A sister hugging another sister. A kid's show showing happy children dancing. This list is endless.

The vision of Jackie in her uniform going to school for the first time - I remember not too long ago wondering if I would ever see my youngest enter elementary school.

Steffie getting confirmed. Another milestone in her life. Will I be there for the milestone of 16? What about graduation from HS?

Will I see Kate graduate from college?

The vision of Bill without me. It's humbling, beyond humbling to face it all with my head up and acting normal.

One minute is too long. One day stretches out into infinity. But then both go by so fast it makes my head spin.

My latest morbid activity is mentally making a list of things I must do before I die. The Tetons, Vancouver, Hawaii, taking Jackie to Disney, going to the ACC basketball tournament, Las Vegas, the Painted Desert, Holland and the tulips, Ireland, and on and on and on...

Where was the warning label on the cancer diagnosis that said "this is a mental exercise. persevere at your own risk?"

"We Learned alot this Year"

2009-12-31T17:28:00.002-05:00

Steffie said that. She did. She takes this change to a new year more seriously now since she's got 2 digits to her age :) My darling, perceptive child said this to me just yesterday as we were doing errands. I told her I wouldn't be sad to see 2009 go. And out pops that tidbit of wisdom.

Yes, we did learn alot this year. Alot of good and some bad. We learned that Mommy is tougher than most and that I was incredibly lucky not to be plagued by the severe side effects many experience with chemo. We learned that each day matters more and that we're tighter as a family. Chemo and treatment has left scars and leftovers that don't disappear but I can honestly say I'm looking forward to what 2010 brings this family.

Bill, the girls and I wish you all the happiest and HEALTHIEST 2010 possible. To all my blogging sisters and brothers, you have been invaluable to me as a virtual support system. Take every care with yourself, love your families and be well in 2010.

Hugs,
Sharon

Christmas Eve

2009-12-24T08:49:00.004-05:00

Christmas Eve is such a special time in our home. I have a carved in stone rule that the mass hysteria stops by noon on this day. This gives everyone plenty of time to come back down to earth for the seriousness of the day. This is the day Mary and Joseph traveled to Bethlehem. The day Mary's body prepared to give birth to the light that is Jesus. This day has truly more significance that merely the day before Christmas.

We'll all start collecting here at 1 p.m. to spend some quality family time together. The girls are excited because Bill's mom is in from Ocean City and we'll be going to mass tonight with everyone. Then our big tradition of dinner out with at least 15 of us at the local cafe. Bill's coming home early from work. Work can wait.

I think back to this time last year. I was minus my hair, exhausted despite the careful planning to give me a little of a break from chemo around the holidays. 2009 has been such a hard year. A year of pain and a year of recovery. I can honestly say I won't have any trouble putting this year behind me.

This doesn't mean I'm not thankful for what I have. I am. I think the only thing that hasn't been shaken is my faith. The depth of my feelings in God have only gotten stronger as I progressed through the nightmare. I have felt all along that He's guiding both Bill and me in the choices we make and that his knowing hand guides the physicians who care for me.

It's been an unbelievably long year. But when I think back to last Christmas, we've made great progress. Maybe not as much as I would have liked but I do know God has a plan for me, my girls and Bill.

Steffie has become a little lady, more aware of her responsibilities and duties in life. She's always been the most aware and sensitive child. Yes, she's a procrastinator of near epic proportions but I see a difference in her. I think of her comment about BC being a good thing for all of us. She feels that it's grounded us in what matters. It's made her more aware than children should be at her age of how her actions affect other people and that every moment should be cherished for the gift that it is.

Jackie has blossomed from baby to little girl in this past year. I get twinges of anger every now and again that this last year was stolen from me by this disease. My baby made this transformation while I was at my very worst. But somewhere inside I know it made her a stronger little girl. Compassion can be taught only by example and I have cherished memories of her tucking up next to me last, snuggling close to make Mommy feel better. And it did.

Bill has been my saving grace. I couldn't have made one step down this long road without him.

There's still more to do. More recovery, more pain from the last surgery, more living but all of it is surrounded by love.

Merry Christmas.

I am OKZay! And Snow!!

2009-12-22T20:44:00.006-05:00

A week later, and here I am. I'm hurting still but it's the muscle healing. The incisions are starting to pinch like crazy as the healing progresses. For those of you that might be wondering how this part of reconstruction goes, I'll explain.

I had 3 types of cancer in my right boob so everything, including the nipple complex was removed. We decided on an elective left mastectomy for preventative reasons. In any event, I ended up with expanders placed under the pec muscles - the left one was punctured when my mediport was installed. Sr. S left 6 inch incisions across the middle of each breast. I assumed he would cut on the side. Nope. He just opened the existing incisions like a "zipper."

So this surgery last week involved removal of the old expanders and insertion of the new silcone implants. We decided this would be best because I didn't want to go through filling things up. Dr. S also removed a ton of scar tissue and bulk crud around there - all of it went for biopsy and all of it came back clear!

So the incisions now have stitching that will dissolve and sticky tape across the middle. This will fall off on its own as I take more showers. Just praying, praying praying! that I don't react to the tape.

Pulling open dresser drawers isn't fun. Stirring cookie dough is like pushing a shovel through cement. Over time, apparently, the pec muscle degrades and weakens. So as soon as I can, I need to start lifting 2 pound weights to strengthen the pec muscles. They aren't sagging - they're just really really weak.

I'm way tired. Anesthesia and me simply don't agree anymore. I can get about an hour of energetic effort doing something and then I run out of steam. It's getting better and I know it's only been a week.

Wanted to post some pics of the snowstorm we had last weekend. 26 inches of snow and I couldn't lift a shovel. I pushed it around instead :) Thank God for Martin-the-awesome-neighbor who plowed our driveway. Since we kept going out to work on it in stages, he really helped us out!

Hope all of you are well and happy.

Hugs!

Angels

2009-12-15T07:56:00.002-05:00

Here I am at 7:45 on Tuesday morning. Boy, am I sore. As in wrestling with wild animals, hit by a Mac truck sore. Even my lower back hurts. I guess that's from lying on that evil operating room table.

Things apparently went well. I was asleep so I missed it. I now have tatas that, of course, I haven't seen. I don't like looking at incisions so I've kept my bandages in place. Bill checked the bleeding and healing. He says things look OK. No drains, thank you Jesus. Those things are beyond gross!

Dr. S did do some scar tissue removal. He also sent everything to the pathology lab for testing - I guess this is standard procedure. I can't tell yet if I can move my arm better although the whole mess feels less tight across the chest, if that makes sense. I can't feel much of anything other than discomfort but the pulling seems to be gone. My right arm is pretty swollen but then Dr. S was in there messing around and it's my lymphedema arm. I did get stuck on my back in bed like a turtle with a shell. Had to wake Bill up for help getting up :)

All in all, it's manageable.

We actually ran into the lady at the hospital who made sure I had a private room last year during my mastectomy. I got the chance to thank her for helping us out. I can't imagine what I would have done without Bill with me 24/7. Angels along the way.

And we ran into at least 4 people in the surgical center who've cared for me before at one time or another. This was nice cause they treated me like a queeny-waheenie. Kept me warm, kept my mind busy during the wait with all the visiting and chatting. More angels.

Wish me Luck!

2009-12-14T08:17:00.002-05:00

I'm heading to the hospital in a little while for the tata replacement surgery. This should be a "drive by" type of operation that should be very quick. I hope. Me and anesthesia don't seem to agree.

I have been without boobs for over a year now since I don't really consider my expanders boobs. One is popped and the other has only been filled one time. It's gonna be quite weird to fill out a bra (even if it's only a B).

I chose barely B cups because I'm not used to them anymore. And also because I confess to being quite worried about the skin that's left. Radiation fried me to a crisp and although I've healed, there's a tremendous amount of scar tissue. Dr. S tells me he can clean it up some with scar tissue removal to help my range of motion. I SO HOPE THAT WORKS OUT!

I get to have clear fluids and jello until 10 a.m. Isn't that nice? :) I wonder why I couldn't have the same the day of my big surgery? I was a freakin mess and being so hungry made the whole thing worse.

Bill the super dooper wonder husband is going with me today, as is Mom. Poor guy, he simply has to wait but then, he's used to that. This will be my 5th surgery for this BC thing. That's pretty sad.

I'm off to get Jackie ready for school. Hope this post finds everyone well and happy.

Cheers everyone!

The Muppets do Bohemian Rhapsody

2009-11-28T14:19:00.000-05:00

Rationed Mammograms

2009-11-19T21:57:00.001-05:00

I'm sharing a link to my political blog because, frankly, this mammogram stuff has ticked me off. So feel free to read and comment if you like.

We all know mammograms need to be done on women part of a comprehensive health maintenance program. Don't let anyone tell you, your loved ones or neighbors any different.

http://politicalhairballs.blogspot.com/2009/11/womens-health-rationed-mammograms.html

Plastic Surgeon Visit and Vitamin D

2009-11-18T20:05:00.002-05:00

Good visit with Dr. S. He didn't much care for my flat left implant and decided he's going to give me "new boobies in time for Christmas." Pretty cool deal. The additional good deal is that he plans to remove some of the scar tissue that has built up around the left side as a result of surgery, radiation and the improper alignment of the planets. This is good because there is a constant pressure on the right side of my chest. Adding a boob to that has me a little worried in the comfort department.

I did some research into Vitamin D. Turns out this neat little vitamin plays a rather large role in the prevention of all kinds of nasties. Vitamin D also, and this is extremely important for women taking Tamoxifen, it increases the effectiveness of the drug. I'm a little annoyed that I didn't know this before I started taking it 6 months ago, but I do have my superman dose right now. Also, there's been studies that have found low levels of vitamin D in women who have breast cancer. So is there a link? It's possible. To have ANYTHING added to the arsenal of preventatives to fight this fight against the beast - everything is important.

I'm including a link that begins with a disturbing statement. Please look at the article as a whole rather than freaking out at the first statement. It simply explains it well, as opposed to trying to interpret medical speak from a journal article.

http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20080515/vitaminD_cancer_080515/20080515?hub=TopStories

Now I'm no doctor. I never professed to be. I do, however, have some serious power to my google searching ability and I didn't turn up anything suggesting Vitamin D wasn't an important part of overall wellness for cancer survivors. Look at it this way, if we are deficient in any one area, our bodies can't function as they should. It's the same with Vitamin D.

I still don't have my answer whether Tamoxifen actually encourages the depletion of Vitamin D. I'll save that one for Dr. K at my December 2 checkup and marker blood work visit.

Roger that!

Just call me Superman

2009-11-17T10:30:00.002-05:00

Yes, I feel better. I had blood work that miraculously didn't show I was riddled with new cancer. I have a vitamin D deficiency and I'm anemic. Chemo - the gift that keeps on giving!

I need to do some research about this topic and pick the brain of my friend, Vicky the newly anointed nutritionist. There has to be some correlation between chemo and these vitamin messups. How do I find a balance without taking a pill? Or is this something that I can't control and will need help with for the near future? This is definitely a serious question for my oncologist, who I see on December 2nd.

I feel SO MUCH BETTER!!!!!!!
So Bill is literally afraid of my prescription Vitamin D pill. This puppy is 50,000 iu and I take it once a week. The look on his face was priceless when I showed him my whopping 4 pills. He thinks I'm going to be Superman, leaping over tall buildings in a single bound. More like Mighty Mouse.

Been writing like a fiend at the content mill. It's so nice to have my marbles in line and be able to concentrate. I don't remember even chemo fatigue being so intrusive. I am so glad this got corrected and if I can maintain it, I'm officially heading back into the land of the living.

Got a visit with the plastic surgeon today to schedule permanent tata installation for early December. My gift to myself. I don't even care if the whole mess interferes with Christmas as long as this nightmare is DONE by the end of 2009. I wonder how long will I be sore? I'm not interested in getting quasi nipples installed. Just give me some chichis (Mexican for boobs) and call it a day. We don't need to be complicated here :)

So I have tons of Dr appointments over the next 2 weeks. Each one is a checkup: 6 month checkup with radiation specialist, 3 month marker with oncologist, 6 month checkup with surgeon, 6 month checkup with plastic surgeon. Also have to schedule my preop physical and get more bloodwork to check the Vitamin D levels. Argh! My "social" calendar is getting full pretty fast!

I want you all to know my mom admonished me gently because I haven't posted an update about the health and checkup. My apologies. It was a gentle rebuke though, reminding me that you all check in occasionally to see what is going on. Again, I'm sorry for being the absent blogger!

Hope you all are well. Will keep you posted on tata schedule and of course, if I leap over any buildings!

Hugs!

Halloween Happenings and November is here!

2009-11-01T17:43:00.002-05:00

We had an extremely eventful Halloween. My niece (and her mom and dad) came up for a visit and since Halloween was on a weekend, Sammi could trick or treat with Jackie. They live 1 1/2 hours away so this was a real treat!

We carved pumpkins for hours - 7 of them! And made chili and dogs for everyone. The funny part was my mom's new dog, Bruiser. He came dressed at a Washington Nationals bat boy. Bruiser trick or treated with us because it was the perfect opportunity to teach this 65 pound oaf how to walk on a leash without pulling. And it worked! He almost tore the arm out of 3 people's sockets but he now walks beside us.

Jackie was a vampire with the coolest spiked pink, black, orange and purple hair. Sammi was an absolutely beautiful witch. She's got gorgeous dark hair that her Mommy turned orange. Steffie was a raspberry. Pretty as always. Sammi was the real deal though. She had the evil witch faces going perfectly in all the pictures :)

November is my favorite month. I like spring and summer but there's something about November that simply makes it the perfect time of year. Maybe because Bill and I got married in November. Our anniversary is on Thanksgiving this year.

Halloween wiped me completely out so I slept for most of today. I was pretty happy about the time change - who wasn't, right? An extra hour. Now it's 5:45 and I've done nothing but I'll get it together soon. It's completely dark outside which is really freaky. It's pretty funny when I pick Jackie up from school the week after daylight savings ends. She's convinced I'm picking her later because it's dark outside :)

Still in the jammies watching the hockey game. I'm a bum but I don't care. Yesterday was alot of action.

I did have a Dr's appointment on Friday. Dr. P is so thorough. He took multiple viales of blood to test me for everything from pregnancy (yes, he's clueless) to Vitamin D deficiency and everything in between. Thyroid (he's doing that too Sue!) and anemia and the works. I hope there's an easy explanation for it all. He did give me some Ambien if I needed it. He says that sometimes simply resetting the sleep pattern for 2 to 3 nights can recharge the batteries. I'm not a fan of pills :( He also wants me to stop my Claritin allergy pills. Not a good time of the year for this since I'm really allergic to leaf mold and leaf dust.

So there it is. I had my workup. I need to get a chest Xray tomorrow and then I should have the blood test results tomorrow night. My next marker test is scheduled for right before Thanksgiving.

Hope all of you had a happy Halloween too!

65%

2009-10-29T12:50:00.002-04:00

I've settled at the number 65% to describe how I currently feel. I have no energy whatsoever and it's a strain to stay awake during most of the day. I'm exhausted and I have no idea why.

I'm trying to write but it just makes me sleepy. I fall asleep sitting up for a 1/2 hour or so after Bill gets home. I feel tired when I wake up in the morning, even after having 8 hours of sleep. Cleaning the house up exhausts me.

65%. That's how I feel, all the time. I do wonder if it has to do with the long-reaching affects of chemo. Or if it's a Vitamin D deficiency or something. I need to get some bloodwork done.

So if you've been wondering where I am, you have the answer. I'm too tired to do anything more than simply try to get out some paying articles each day. I click on this blog and I'm too tired to log in.

50 years golden anniversary for Mom and Dad

2009-10-18T20:44:00.002-04:00

We just got back from an incredible trip to the Bahamas to celebrate Mom and Dad's 50th anniversary. Yes, they took us with them - to celebrate the fact that Mom and I are still here.

We stayed at our favorite place - Atlantis. Stef and Jackie came with us and we had a blast. Beautiful, incredible weather the entire time. There was a 50 degree difference in temperature between the Bahamas and D.C. when we landed at National Airport last night. Brrrr! Big time.

Something about those islands just soothes the soul. We're always really busy but it's simply so relaxing to be in that place. A good healing for everyone. The kids did lots of activities and clubs and rode all the slides. A very fun time.

We're home now though and I guess I've got to kick myself in the butt to schedule my next surgery. This should be a "drive by" operation to swap out my implants. I'm not looking forward to it at all. I much prefer not to be poked and prodded if I can help it. I've infinitely enjoyed not visiting doctors regularly since April :) At this time last year, I was collecting hair from the shower drains, sink and pillows as I was losing my hair to chemo. It's hard to believe it has been a year.

But I gotta do it so maybe I'll call the plastic surgeon at the end of the week. Maybe being the operative word. My left implant is pretty deflated. If you remember, it sprung a leak with the installation of my mediport last year. Not the most attractive booby in the house :)

Hi to all of you. Even if I haven't been writing on here, you're all in my thoughts every day.

xo

A tribute to a grandma

2009-10-08T11:48:00.006-04:00

A writer friend just lost her grandmother. Heather got to spend a few of her final days with her before she passed away this morning. She took this picture and it's so touching in it's simplicity that I had to share it.

Please include Heather and her family in your prayers.

The Pessimism Point

2009-09-27T12:37:00.002-04:00

Having cancer brings a person through every stage of grief. Denial, hysteria, acceptance, buoyancy through faith and acceptance, and I believe most of us hit a point of pessimism about the whole thing.

I know I did everything I could do to prevent this beast coming back. I stayed uplifted throughout my treatment...yea, I whined but I was entitled to that. I kept my kids and husband on an even keel. I even kept me on an even keel, despite being bombarded by drugs and fried to a crisp.

I'm pessimistic now. I don't look like a cancer patient anymore but I hate how this has changed me. In my head. I think like a cancer patient now instead of like the multi-tasking, handle-anything, juggling mom and wife I was before. I'll let fatigue sweep over me when I wouldn't before. This illness has colored everything a shitty shade of pink.

Am I in a rut? I don't think so. I'm doing my normal things and taking joy in caring for my family. I still get annoyed at the volume of crap in this house (toys and stuff!!) but I can't muster up the energy to do anything about it. This bone weariness plagues me everyday. I slept my entire Saturday away. That was stupid.

So I feel quite pessimistic about the whole thing. When I look at my hair, I wonder when it will fall out again. I'm happy with my eyelashes for a few days, then I get mad all over again. I don't look like me. And I hate this. There's some part of me that wonders if I'll have the gumption to barrel through the next round. Whenever it strikes.

There's my pessimism. I don't think cancer is done with me yet.

Hi Lonely Blog

2009-09-17T08:32:00.002-04:00

Whew! We've had way too much going on for me to even visit this blog. So hello to my lonely, ignored blog and to my blogette and blogger friends. I've missed you.

Bill's Grandma died a week ago Friday and we drove to Texas. Maryland to Texas is about 1350 miles one way. We left Tuesday and drove like mad to get to Nana's funeral on Wednesday. We stayed until early Sunday morning and drove straight through to get home. Quite a trip - an exhausting trip.

You know, life needs to settle into a routine here. It would be nice to not have a crisis appearing once a week. Broken dryers, deaths, sick kids, car towing, Bruiser the wonder dog - it's been one thing after another. I know it's life but we need some peace. I need some peace in order to make some money!!

So Jackie's blood work came back negative for Lyme - Thank God. She hasn't complained of sore legs in over a week. What a weird virus. I'm just on the lookout for it to reappear and if it does, we'll get her tested again. She does go to preschool on a horse farm so the chances of her picking up ticks on her daily hikes is much higher than for most people. She's loving school but still answers with "Nothing" when we ask her what she does every day. She's a smarty britches!

I'm finding losing even a pound is like pulling eye teeth. This Tamoxifen makes things rather stubborn. Dr. K told me that it causes stomach bloating - thank you Captain Obvious. I find this whole thing extremely frustrating when dropping back the weight I gained from the steroids will take a literal act of God. I want to be at the correct weight for alot of reasons, beginning with the lower incidence of recurrence of breast cancer in women at optimum weight. It's good incentive to eat like a rabbit.

So here I am! Just here. Pissed off at alot of stuff but hanging in there. I don't like feeling this way but digging myself out of this hole is quite difficult. I guess it just takes time and when I think about it, it only has been 4 months since I finished radiation. About 8 months since chemo was done.

Gotta run. Be well!

How ya doing?

2009-09-06T17:50:00.005-04:00

What's up?

I've been buried under a mound of drama this week with the girls going back to school. Right smack in the middle of my first week actually working without interruption, I have the major drama of a foreclosed animal being sent to the shelter that my Mom absolutely wanted to rescue. (not my foreclosure - someone else's).

So anyway, Jackie had a fever, missed a day of school, went back then developed stiffness in her legs. Out of school again on Friday for most of the day to have a checkup and blood work to check for Lyme's disease. She's walking very stiffly when she wakes up in a morning and her fever appeared one time and then disappeared. She's okay but occasionally stiff. Blood results should come next week.

So drama. All-week-drama-that-keeps-a-body-from-working type drama. But it's good because this doggie will be happy with Mom and Dad and she loves him.

If you want to read his story, click HERE and for part 2, click HERE. I'm writing this every day after our visits so there's another article coming. I need to be very careful with what I say though, because vindictiveness is the middle name of some of the people over there.

He's the pup in the pictures in my article and he's absolutely delightful :) There will be more to his story over the next few days and months.

I have video of him now too.

Yes, that's a rooster you're hearing in the background. The rooster is quite confused, since the video was taken just before 5 p.m. There's ducks (Bruiser likes them) and some chickens too. My sister-in-law Michelle is the "HAND" you see :) and she's the one telling the rooster it isn't morning.

Be well and happy Labor Day everyone!

Reflections

2009-08-31T22:49:00.003-04:00

At this time last year, I couldn't push myself up in bed, drive or lift anything heavier than a loaf of bread. I was one week out of a bilateral mastectomy and trying to get my kids ready for school.

Jackie started school today, much to my mixed feelings of sadness and happiness for her. She was very excited about going to preschool full-time this year. She had a wonderful day today. And instead of answering with her typical "nothing!" when we ask what she did, she simply told us she had a great day. She's growing up at an amazing speed.

Steffie begins 7th grade tomorrow. This year will be one of her busiest since she'll be confirmed this year. Studies will be harder and she'll have exams in every class. Luckily, her classes are very small with 15 kids each. That's a bonus. If I have to pay for private education then the personal attention makes it worth the money. She isn't excited, maybe a little but I think she's ready to go back to school. Last year was a blur for her and a painful learning experience with a sick mother. Here's hoping and praying this year is 1,000 times better than last year...for all of us.

back to my reflections...

I was doped up on hydrocodone at this time. Do you realize I couldn't drive for most of the month of August due to the pain from my lumpectomy. I was out of commission for so long. I think I went almost 3 months without driving a car. Between the painkillers and soreness, I needed a chauffeur - enter Bill :) I remember the complete pain of trying to turn a steering wheel to move the car for him at the gas station. And then, it's like a switch was clicked. I went to get Jackie from school one day just on a whim. It was painful to drive but not as much. It's truly amazing when I think of the major impact of BC on our lives. It literally took Mommy out of the works for months on end. And that's just the surgery.

I do recall everyone's hysteria (and it really was) over my taking pain pills. Other than my Mom (who had a single mastectomy) - no one knows the pain associated with having your nerve endings ripped out and your boobs basically cut off. Everyone thought I would get addicted to the painkillers except my oncologist who knows I have a good head on my shoulders. I went off the painkillers about a week before starting chemo October 1st. Big mistake since putting in my mediport took a literal act of God and the patience of the Saints. Whiplash was awful.

I still haven't finished my reconstruction. I was thinking about that today. I need to call my plastic surgeon to schedule a consult in late October. But you know? I don't feel like even talking to my doctors. I'm happy with them not poking me. I'm happy to not have to drive for rads every day. My blood is my own :) I'm taking my pills like a good girl and taking care of me.

One year makes all the difference and no difference at all.

I think my body's trying to tell me I'm tired because I'm now wearing Bill's glasses to write this post.

Night all!

Bill's Grandmother

2009-08-30T15:34:00.002-04:00

Bill's grandmother, Nanna, suffered a stroke that caused bleeding on the brain. She's in her last days now and while we're sad, we're also reluctant to demand more from a woman who's been on this earth for 96 years.

The doctor's don't expect Nanna to last much longer. Bill's Dad, Sonny, is on his way to Texas as I type this.

Since I only entered this family about 5 years ago, I had the pleasure of visiting with Nanna a few times during visits to Dallas. She might've been a little forgetful but I watched her hold her own against Bill's teasing and silliness. A beautiful lady, I visited her with Steffie during one of her hospital stays. It was the very first time my Steffie discovered the wondrous joy of listening and hearing an older person speak with both wisdom and knowledge. Nanna and Steffie hit it off instantly.

She's had a full life of wonderful kids, grandchildren and relatively good health. Please keep Sonny, Nanna, Bill and their whole family in your prayers over the next few days.

Chemo Leftovers

2009-08-30T11:55:00.003-04:00

Chemo offers cancer patients a miraculous chance to continue living after a serious diagnosis. I said many months ago that chemo was getting a bad rap because the side effects from the supportive drugs (steroid, antinauseas, etc.) were just as bad as the chemo. I want to take that back now...sitting here 8 months after finishing chemo. I won't but you'll see where this is going in a minute.

Yes, I feel better. But I still feel the effects of the chemo. The bone aches are getting really old. However, the reason I'm writing this is Mom. She's having hand tremors and foot pain (neuralgia) that is simply debilitating at times. Mom is a drink spiller because of this. I wrack my brain trying to think of things to help her with this because it's quite frustrating at times. Her oncologist has said he wants her to slow down - to think before she moves and plan her next movement. Of course, she isn't doing this - just barreling along.

She's burned herself on the hand this week with the iron. She is on Lirica to help with some of these leftover side effects. It has eased the foot pain. And we really can't tell if the tremors are lessening because of the Lirica or because she's a few months out of chemo. Whatever the reason, we are thankful she can put on her eye-makeup again and do most tasks without hacking off a finger.

The bottom line of this blog is that while we're undergoing treatment, nothing else matters except systemically attacking the cancer. Our quality of life sucks during treatment but we expect it to improve. After treatment, we feel such relief that we've climbed the chemo mountain, come down the other side...but are we whole and happy? Yes, we're here (and that's a bonus) but these discomforts can be at times debilitating, frustrating and intensely painful as we work through recovery.

And before anyone says "what's the alternative?" - I'm not whining here. I'm expressing that these leftovers aren't broadcasted to many patients, if any at all. I never knew I'd have recurrent, daily bone pain. Nor did I realize the standard treatment is to ply me with pills to make life bearable.

No thanks to the pills.

I just exercise to help with this and pray that someday it will go away. I will say that the pessimist in me seems to think that after 8 months, I'm going to be living with bone pain far into the future.

Follow my footsteps

2009-08-27T15:08:00.003-04:00

It's amazing how there's almost a recipe for the progress each one of us makes as we move through breast cancer treatment. Diagnosis, despair, pick up by the bootstraps, surgery, chemo, radiation, recovery...on and on. One after another. Like cookie cutters. I read one blogger friend will finish chemo this week and I think of how I remember the same time in my life. As clearly as I remember the birth of my children.

One of the things that fried me the most when I was first diagnosed was everyone thinking BC made me like everyone else. I didn't like pink (still don't) and don't want to be part of the club. I tear up when I see pink ribbons, pens, socks, purses - because it defines me now. It's who I am.

I don't think a day goes by that I don't wonder if the beast will return. I know I'm reminded of the mess made of my body on a daily basis. I have to laugh when people say to my whining, "yea but what's the alternative?" Hey, no one knows more than someone who's faced what I have. Eye to eye with mortality at age 40 wasn't/isn't fun. I've also had people tell me "it's life" - thanks, but no thanks. I'll take reduced levels of stress for $100, Alex.

I went for marker tests yesterday and a checkup. I'm fine, although Tamoxifen isn't being kind to me. I bought an urban rebounder today because it's supposed to be low-impact exercise and excellent for lymphedema. Hips, knees and ankles hurt brutally at times. I'm 8 months out of chemo here and the bone pain still overwhelms me. I gimp frequently, tottering around holding onto stuff - especially in the morning.

Jackie and Steffie start school next week. I'm looking forward to it, sort of. My baby won't be home with Mommy anymore. She needs to be in preschool for the phonics, writing and socializing. I just can't help feeling this last year was stolen from us both. Hell, it was stolen from all of us.

This time last year I still had my drains. Yuck. I guess that's progress in someone's eyes. Still have another surgery sometime this fall but I don't feel rushed about it. At least I won't have drains this time. Slice and dice - driveby surgery to swap out my implants. I'm told the new tatas will already be filled so I don't have to go in for filling. I sure hope so.

I did something very therapeutic this summer. I chose 20 or so breast cancer articles for the company I write for. I researched and wrote until I purged it all out. I did learn a lot but ultimately, I think a writer wants to help their readers gain a better understanding. It was medicinal for me. If one women who's scared stumbles across one of my articles, then it makes it worth it.

There really isn't anyone who can relate better than someone who's been there...

One Year

2009-08-26T00:57:00.008-04:00

It's been one year since my mastectomy. Actually, 1 year and 6 days. I spent the last 5 days in Ocean City with Bill's mom, making a concerted effort to forget the previous year of pain and sorrow. This time last year I was trying to push myself up in the bed like a turtle stuck on my back.

I remember every minute of those first days - time blurred when I started chemo. I do remember that in just a week or so from now, I found Renee who seemed to be working in tandem with me. Surgery the same day, eval's the same day, and 4 sessions of chemo at exactly the same day and time. I had two more than she did - lucky her :) Congrats on your one year Renee!!

I have some really incredible pictures to post of the surf in OC during the hurricane. It tore up the beach but southern storms don't usually remove sand. They bring it back whereas a nor'easter takes it away. The surf was extremely high. We didn't see adverse weather from the storm - just monster waves.

We'll do pics instead of getting mired in the one year business. I just don't feel like thinking about it right now.

The ocean hacked out what we called a "cake" - a chunk of raised sand the width of the beach. This chunk is still there. The really cool part was the tidal channel up near the dunes. This thing had a serious current, similar to those you see on a lazy river. Very dangerous rip current at the entrance of this channel to the ocean - where the guy in the grey shorts in standing. Parents congregated there for two days watching the kids. The lifeguard was out of his chair constantly saving people from the rip currents.

Literature often uses the term "angry ocean" to describe all sorts of waves and boating. The ocean was definitely angry this past weekend with the onslaught of Hurricane Bill.

The hurricane was located between Bermuda and MD at this point.

The noise from these crashing waves was so loud that we often couldn't hear each other sitting right side by side. It made a popping noise at times - almost like a loud slap. We'd jump every time. Pictures really don't do the waves justice so I took video as well. I filmed a surfer for perspective.

Back to School Freak Out!

2009-08-18T17:03:00.003-04:00

Dropping Jackie off at camp today, I noticed a calendar on the wall. I realized in that very moment that my kids have less than 2 weeks before school starts and I've done nothing. Compare this to last year when I was ready 2 weeks ahead of time because I had a major surgery scheduled.

Time flies in the summer.

I didn't have my cell phone with me so I couldn't call Bill to freak out. So I went to the bank and then drive home. It's my quiet day - just me and the cats. But I was freaking out about school starting. I called Bill and he didn't freak out but commiserated with a "Moo" when I told him I was having a cow over this.

Money is tight for everyone but it's especially tight here right now. I'm buried under thousands of dollars in copayment bills. You know the spiel. We all have tight finances at times. This is one of those times.

So I started chugging through the coupons sites to find coupons for Stef's favorite stores, school supplies and shoes. I stopped myself about 10 minutes into the hunt and decided to craft an article for posting on one of my favorite sites. I usually don't post my published work on my blog unless it's something really useful to the friends who read this blog. This one is REALLY useful to the Moms and Dads. I even tweeted it on twitter.com because I started doing that yesterday too!

Visit my article HERE!

Cheers and happy shopping!

Parental Experiment #525

2009-08-14T10:56:00.003-04:00

So I picked a random number for this experiment. Sue me. I'm at my wits ends with these kids.

We have arguing, with me and amongst themselves. We have dallying, on the level that we miss the bus to camp. We have dishes everywhere, as well as clothes tossed onto the floor. Mommy isn't Mommy - Mommy is a maid.

I had a brilliant idea after missing my Friday morning breakfast with Mimi, Poppa and Aunt Pat (of voodoo doll fame) because Steffie missed the camp bus. I decided that every time one of the girls does something I've asked them not to do, I'm charging Steffie $1 and Jackie $0.25 (Jackie has less money).

I'm giving each of them a list when Stef gets out of camp today. They'll know the parameters of what is expected of them.

I'm tired of yelling, tired of asking for things to be done repeatedly. Tired of arguing. Tired of them thinking they can back talk, do what they want and act up when this home needs peace and quiet.

I just might be getting a pedicure out of my collections each week.

It has occurred to me that $1 is a pretty steep price for Steffie. However, you need to understand that this happens every day, ALL DAY. It's a nice way to inflict pain without raising a finger.

I'm off to decorate my coffee can :)

Still chuggin along...

2009-08-12T23:01:00.002-04:00

Been busy. Writing, being Mom and having family in town. I'm still recovering from 2 days and 10 people staying with us. It wiped me out.

We went to Ohio to visit my aunt who has early-onset Alzheimers. She recognized us all, except for the babies that she had never met. A good visit. A great visit. But I can honestly say that MD to OH is way too long for a 3 day weekend. Especially with three kids that need to pee at different times :)

I've started another blog. This one political. I'm having alot of fun with it as well as enjoying the ability to get my thoughts together.

I originally started this blog to document my course of treatment to construct a book. A book which I cannot write at all now because I dissolve into tears.

Maybe someday soon I'll be able to write about this nightmare.

Breast cancer is so cliche ridden it makes me cringe. Whenever I do write it, I want to have a voice that doesn't say what has been said before. I need to have all my brain cells firing on overdrive to do that.

My girls are fine as is my Bill. Clyde is still ruling the house (or so he thinks) and Maui is still kicking. My old kitty gave me quite a scare a few weeks ago when she seemed to suffer a stroke. She was totally unable to control her left back leg. But she came out it and appears to be in no pain. Maui is the definition of a tough old bird.

I'll let her go when the time is right, just like I did with her brother and sister.

I was talking to Mom today about everything and nothing. And we both agreed that cancer seems to be quite liberating. It makes a body want to say what's on the mind.

A post for Beth :)

2009-07-22T21:59:00.005-04:00

Hi everyone. I thought I'd make a whole post about Beth's comment asking for other side effects still present after 7 months. So if this post sounds like whine and cheese - blame Beth!!!!! Haha - just kidding...

I can hear the complaint department door creaking slowly open...

Alright, let's start with my head. You all know about the hair. I have enough to go without a hat now although my head does get hot. I use baseball caps sometimes and my hair is unruly. Remember the hair coloring incidents (see earlier blogs) and learn from my mistakes. Chemo hair takes color differently than it did before.

Eyebrows are wispy - this bugs me although Mom gave me a good Maybelline brow pencil that works well.

Tamoxifen has its very own set of side effects. Thin eyelashes, facial fuzz and my undereyes are puffy like they've never been before. No, I haven't been crying.

Hot flashes are a regular occurrence between 8 and 9 every night. And cold flashes, if that makes sense. I shudder when I get cold now. Pretty bizarre.

Working out doesn't work as well as before. I exercise every day even if I don't have much energy. Even if I only ride a mile on my exercise bike, I do it. I guess the accumulated steroids and chemo makes the cells very different. These buggers are quite resistant to toning and cardio. It's like shoving a square peg through a round hole.

Bone pain isn't as constant now but it's still there. Hip pain is much better and only occurs once a day. The concentrated pain lies below my knees to my ankles and the tops of my feet. Maybe this is my version of neuropathy. Doc says exercise will help - so I do. This pain is excruciating at times, so much so that I can't walk well.

I get these flashback-types bouts of intense nausea. Like a reminder of chemo. It lasts for about 1/2 to 1 hour and I'm miserable. The stomach pain, back ache, full feeling - all the sickness of chemo. And then it goes away. It isn't in my head and there's no apparent time that it kicks in. Just random - once or twice a week. I think I'm one of the very very few people that didn't puke once while taking chemo. I have a cast iron stomach so these little recurrences really make me miserable.

Concentration is very hard for me. I'm reading more, since I believe this is a very good exercise for the mind. I can't multitask and I do hope this skill comes back. I test myself during the day with chores, doing multiple tasks at once to get the juices going.

I've also noticed my coordination is funky. I can actually write whole sentences with my fingers shifted on the keyboard and it comes out as gobbledly gook. So I need to look at the keyboard now when I type - which slows my writing down a little. Again, I do feel this is a coordination issue that will resolve as I distance myself from the drugs. I make some serious typos sometimes and it can be hilariously funny. Of course, it won't be funny if I send something bad to my editor :)

It's funny, I don't think about my missing boobs. Yes, I've had to adjust to wearing looser shirts but I'm not feeling rushed into getting the final reconstruction. I've decided to wait until November. I need a break from the poking and prodding. A long break.

Skin has changed - on my face and body. I get dehydrated very easily. It's like the chemo sucked the moisture out of my skin. I coat lotion on after my shower, right onto my wet skin. This is starting to make a difference but it's annoying. My lips get dry quickly too. I'm a chapstick queen here but I may have to switch to lipstick soon.

Fatigue is a given now. I get really tired and conk right out. It doesn't matter if I was meeting the Pope, I'd fall sleep if I was tired. This really worries me if I ever go back to work. I'm very afraid of getting run down again.

Radiation effects: I still feel tighter skin on my right breast, especially where the boost radiation treatment occurred. The skin is soft again but still tanned. All around, I'm pleased with how fast and well I healed. It just looks like crap but then, my whole chest does ;0)

Beth and everyone going through chemo - please, please beware in the first year after chemo that you are exceptionally susceptible to germs and viruses. I picked up a cold from Jackie and it's kicked my butt. Bill actually stayed home from work with me on Monday to take care of me. I've never had to have someone care for me during a cold. Plastic bubble - here I come!!!

Here's a little tidbit that I discovered today that I must share with all my sisters (and brothers - Armand!!) in cancer. I have found the miracle product that helps with eyelashes. Yes I have. I'm getting some Monday when Bill gets his paycheck. I had an at length talk with the cosmetologist at the drugstore and she's been using it. I can't remember the name but she says it works. And I saw her eyelashes to prove it!!

You cannot imagine how excited I am. I'll take eye pictures so you guys can follow my progress. I'm SO doing this next week. This one thing will go an extremely LONG WAY to making me happier. I can't remember the name of it now but I'll post it here as soon as I can.

I'm sure there are other "leftovers" that will occur to me as soon as I hit the publish button. I'll add them when I remember!

A sleepy blog

2009-07-21T23:33:00.003-04:00

I can hear this thing snoring during the day, almost asking me for attention cause I've been a very neglectful blogger. Shame on me.

We've been so busy with Stef's swimming that I literally haven't had time to write anything other than paying articles. I crank out somewhere between 7 and 10 most days, if I'm lucky...and if I don't have "Mommy" 10 zillion times during the course of the day.

I think it's funny that I was happy summer was starting and I wouldn't have to go to school every day. Hah! Summer is far busier than school days but a mile!

Stef is swimming really well now and she actually swam butterfly in Divisionals tonight. This is the first time she's done fly in a meet and she actually won her heat. She's got a natural grace and speed in the water that makes watching her a joy. She's a very good swimmer and progressing nicely as time goes on.

Jackie is swimming too at her camp. She'll probably hit the swim team next year when she's 5 years old. She tried fly and backstroke last weekend. She needs to be able to swim for 25 meters unassisted to compete. God help me if she doesn't win (and the world - Mom are you reading this?!) Jackie isn't a happy camper when she loses.

My eyelashes still aren't back to where they were. I wonder if they every will be. How long does it take an eyelash to grow? That's something I'll google and report back at some point.

Hair still sucks. I hate short hair. With a vengeance. I've lost my 2 big toe nails and my 2 little ones. I jsut use flesh colored polish and screw anyone who doesn't like it. Luckily, some nail grew out under the broken nail so there's something there to paint.

7 months yesterday - I had my last chemo session and still the effects continue. It sucks. I'm here but I just want my hair, eyelashes and health back for good.

Going to bed. Sleep well everyone. Even if I haven't been responding, I have been reading everyone's blogs to keep up with how everyone is feeling. You're all in my thoughts and prayers every single night!

Ciao.

Conspicuously Absent

2009-07-13T23:37:00.002-04:00

That is me.

Sorry, last week sent me into such a royal funk it took a few days to right the ship. You see, the 7th panned out to be a horror as I predicted. Not only the past baggage but new stuff as well. Jackie got hurt at school and I spent about half the day at the doctor's office with Steffie due to a hurt arm. A DJ's speaker fell on her arm during a July 4th party. No broken bones but tendon, ligament and muscle damage.

It was alot of drama on a day when I already had enough drama. And to top it all off, I watched Michael Jackson's funeral. Sad, all around just a sad day.

So I'm writing like a fiend trying to get some money pumping back into the house. It's hard to keep up the pace and it's especially difficult with the constant chatter of little monsters. I still can't shift gears quickly or split my attention very well. Multi-tasking is nearly impossible. Chemo brain is still in effect.

I have noticed that articles flow much better and that I can get those thoughts down quicker. There are times when my fingers are faster than my head, which is funny because the words end up being googledy gook. Good thing I work for myself. I've also noticed that I have a neat littel equilibrium problem at times. I tip over. Hip pain has definitely dropped off although the bone pain from my knees to my ankles hurts terribly at times. Thanks chemo - loving these continual side effects.

I like my nightly 8:30 - 9:00 hot flashes. Every night, without fail - I break out into a sweat. Predictable is good.

Cats, fish, birds, Bill, and kids are great. Learning to cope with what is left after the world gets torn apart by cancer.

Mom is doing well - she's starting a new chemo regimen of Avastin tomorrow morning. This will be much gentler than the Cysplatin with virtually no side effects. Infusion will be short - about a half hour if she does her blood work before going to the hospital. This first time will take a little longer to check for adverse reactions. Mo is also taking a new drug called Lirica for neuropathy. She could barely walk from the pain in her feet. It's been 5 days and we are seeing simply remarkable improvement in her pain. How's she supposed to be superman when her feet hurt?

Too many birds on the antenna here. I just find it incredible that I can't juggle so much anymore when that's always been my forte. I try not to let it bother me and do what I can without freaking out. It's just quite difficult to have everyone's program in my head at once now. Juggling stuff takes alot of mental effort.

Done for tonight. Ciao!

Coming up on 1 year to diagnosis

2009-07-05T15:37:00.002-04:00

July 7 is the absolute most awful day ever created by mankind. So I'm skipping this day, if you don't mind. Sorry if it's your birthday - change it. It's cursed.

Today's the 5th and so I'm bracing myself to skip Tuesday because I'm really not kidding. I lost a baby on July 7, 2005 and was diagnosed July 7, 2008. This day just needs to disappear.

Have you ever wondered why things happen on specific dates? I think I lost my baby because the cancer was gearing up. Jackie had just been born in January of that year. Maybe it wasn't the right time for the blast of estrogen from Jackie. Maybe God decided I had my hands full with a sick baby (Jackie had a folded intestine called an intusseseption at 3 months). Whatever the reason, to this day I grieve my baby that made it only to 13 weeks.

This is the stuff that makes it so hard to be sitting in menopause limbo here. Bill and I weren't certain we were finished having children. He's the type of person who absolutely should have a little boy. And he doesn't.

Is this a regret? Can you call it that when every now and then you just get royally ticked off at the hand you were dealt? Is it worse to get angry because I'm lucky enough to have my kids when so many women are diagnosed and don't? I guess I don't really care. One thing cancer has taught me is to look out for me first. And I do.

I'll see everyone Wednesday.

HAPPY 4th of JULY!!!!!!!!!!!!!

2009-07-03T23:58:00.003-04:00

God bless America,
Land that I love,
Stand beside her and guide her
Thru the night with a light from above;

From the mountains, to the prairies,
To the oceans white with foam,
God bless America,
My home, sweet home.
God bless America,
My home, sweet home.

Hair Drama Redux

2009-07-01T08:50:00.002-04:00

I gave my hair a little month long break hair before I attempted putting anything other than shampoo on it. It's temperamental after chemo. My hair has always been temperamental when it comes to color. Natural red highlights tend to take over on a whim.

So yesterday I decided to use the "Opps" coloring removal kit to get my hair back to its original color. I want a lighter shade of brown or blonde. I'm so not used to NOT having foiled hair that one shade just bugs me. Don't get me wrong, any hair of ANY color works good for me, except that I'm not a fan of brown (case in point, I've colored my hair for the past 20 some years or so).

Open the box and mix it up - this is some of the stinkiest stuff every created. Follow the directions, put in on for 20 minutes and go back to writing. I checked the mirror after about 10 minutes and almost had heart palpitations. Not only was the brown gone but my stupid hair was now a light strawberry blonde - with emphasis on the berry.

Two choices - scream and cry or add more stripper to my hair. I did another round of hair color stripping with very little changes. So I'm appropriately horrifed but trying to remain calm. I've got one box of ash blonde hair color and another of a darker shade of brown. I figure between the two I can fix whatever wacky color appears on my head.

I rinse and rinse and wash the gunk out, rinse again and wash my hair again. It's now the texture of straw. I love how the kits say do a skin and strand test. Trust me, when your hair becomes light Bozo clown orange, you don't care about strand tests. On goes the ash blonde, cross my fingers and set the timer to 25.

So I'm writing, trying to keep my mind off this nightmare and the fact that I'm supposed to get Steffie from swim practice in about 30 to 40 minutes. 5 minutes in, I couldn't wait anymore. I ran into the bathroom to check the damage and lo and behold............

My hair was EXACTLY the same color as when I started 1 1/2 hours earlier.

No harm done, I guess :)

Juggling Breast Cancer and Motherhood

2009-06-24T17:20:00.001-04:00

Looking back, I'm not quite sure how I did it. With an 18 year old entering college, a 6th grader in the first year of middle school and a 3 year old entering preschool for the very first time, I had my hands full right before school started last September. After a needle biopsy indicated invasive lobular carcinoma, a form of breast cancer that invades the lobules of the breasts, I needed to move on with my treatment with haste.

I decided to have my surgery 2 weeks before school started simply because my children needed to enter school within Mommy intact. Worrying about my kids thinking of me in a hospital bed just gave me nightmares. I pressed to have my mastectomy quickly, including an elective left side mastectomy as a preventative measure. It turns out I made a good choice having that surgery before school started. We bought school supplies, lunchboxes and uniforms before my surgery and organized everything just in case I was under the weather.

I ended up spending a harrowing 3 days in the hospital. This was so rough on my girls and it would have been harder if they had been in school. Calling me on the phone and visiting soothed even my youngest. Our aim was to transition these children slowly with solid information about Mommy's health. The girls helped care for me during recovery and this empowered them with enough strength to leave for that first day of school with heads held high and happy expectations.

Surgery marks the first step on a long road for breast cancer treatment. We all might think losing a boob or two is the very worst that can happen. Chemo trumps that. Chemo takes a person and wrings them out like a rag. It wrecks the body with weakness that even motherhood barely penetrates. I was lucky - very lucky I never had such low counts to end up in the hospital. Every 3 weeks I traveled into the hellish realm of chemo-induced weakness and suffering. This fog lasted for a solid 7 days. And then I'd emerge to be Mom again.

This isn't to say I didn't do plenty of Mom things during that 7 days after chemo. I did. I just don't remember many of them. It was a complete struggle to remain on my feet, concentrate on projects and make lunches. My husband helped with homework and picked up my slack. With the help of his incredible mother, my girls transitioned through the chemo period quite well with loving support and attention from my mother-in-law. I truly believe she kept them from being so afraid by maintaining their schedules and giving them her undivided attention.

The toughest part of having breast cancer with such a young child is explaining why Mommy doesn't feel well. You literally need to tailor the message to provide just enough information so your child won't be scared. We told our 3 year old that Mommy had an inside boo boo that needed to be taken care of . My precious baby would curl up next to me during those 7 days after chemo, tucked close and patting my back. When Daddy asked her what she was doing, she said she needed to snuggle Mommy to make her feel better.

After that first 7 days, it's like someone flicked a switch and I was back on track. I could drive kids home from school, play with my preschooler and focus on the hundreds of mother-type things that Moms do each day. Two weeks of regular-life bliss followed that hellish 7 days. And then I did it again, over and over for 6 sessions of chemo. And my kids held my hand along the way.

Having a 12-year-old just blooming as a young lady added an interesting aspect to my treatment regimen. When a child hears the world cancer, they automatically assume the person will die. Convincing my most sensitive child that the cancer was gone and I wasn't going anywhere took quite an effort. She's come to accept that Mommy is still Mommy, with or without hair or boobs. My mantra was and remains that I will be here for my girls to help them fight this beast if they have to.

Women don't simply stop being Mommy with a breast cancer diagnosis. We deal daily with running a home, taking care of kids, holding down a job and being the general mastermind of most households. We deal daily with the fear of not seeing our children reach adulthood and the fear that our own kids will succumb to this viscous disease. Fighting as a family makes the road so much easier to bear.

Six month after my final chemo session, I'm still not up to my regular energy level. I conk out quickly and struggle to keep up with my active children. I am, however, striving to enjoy every, single little thing they do each day. Each smile, each laugh, each argument (not!) and every night at the dinner table shows me my blessings. I couldn't have succeeded at fighting the beast without the true gift of my wonderful children.

Wildlife

2009-06-19T09:01:00.005-04:00

I lumped Steffie and Jackie into the wildlife post because they're crazy :) This was at dinner the other night. Jackie had her beautiful silver flip flops on so she asked me if she looked like a princess. Where did my grubby baby go?

Little gator in a watercourse along one of the bike paths. He didn't like me taking his picture. Right after this, he went under water so I'm lucky I even caught this pic.

Turtle!!! Love my turtles! This guy was hanging out on the rain pipe that feeds the ponds. Later on, 3 of his friends joined him in the sunshine.

Goofy bird. Funny story. These guys try to hang out around the folks fishing in the ponds. If you give them bait, they will show up at exactly the same time the next day for more. Quite a memory, even though it's driven by their stomach. Guess this is why herons come to visit my Dad's pond for days at a time.

We leave tonight. I'm bummed. We've made the executive decision that next year, vacation will be 10 days. 2 weeks is too long but 10 days sounds just right!

Gators and Lightning

2009-06-16T23:17:00.009-04:00

This little guy was waiting for me on the bank across from our porch this morning. He's about 2 feet long but acts like he's 8 feet. He was just sunning himself about 10 feet from a cormorant. He couldn't have cared less that I was there. I have yet to see the big daddy that hangs out in the main pond. He's huge!

A massive storm that was more bluster than rain thwarted our evening bike ride. But I caught some wonderful lightning pics for the first time in my life.

Promised Pics

2009-06-15T21:54:00.006-04:00

I took my camera on a 10 mile bike ride this morning hoping for some wild life. Well, I got some in the form of a great blue heron. There's a story buried way back on this blog about where my pen name S.F. Heron comes from. So in honor of that, here's some pretty cool heron pics.

Betcha he'd eat every fish in my Dad's pond in a heartbeat.

Here's the linky dinky doo to the story. It's partially edited for profanity.

Hi from South Carolina

2009-06-15T01:03:00.002-04:00

We're here. Getting ready for a trip kicks my butt even when I'm 100 percent healthy. It really kicked my fanny this time. We left friday after Stef got out of school at 11 a.m. and headed south. Packed to the gills :)

It's beautiful down here. By far my favorite is the Spanish moss. There's something just so dramatic about it. I'll take some pics to post soon.

We brought my old kitty, Maui. She makes this rather annoying meow that isn't a real meow. It sounds like "rrrerrr" over and over again. She did this all night when we stayed in the hotel. I'm sorely missing my sound making alarm clock thingy. I love me some white noise to block out kitty sounds. I did figure out how to make static on the radio sound like a waterfall (or maybe it's just my imagination!)

It's late here. After 1 but then I slept through dinner. Jackie and I conked out. She's still asleep so I imagine she'll be ravenous in the morning.

This kitty is yelling really loud. The reason we brought her along is because she's 18 and usually refuses to eat when I'm gone. I almost lost her when I was in the hospital for 3 days with my mastectomy. She's a drama queen, just like my kids :) Maui is beautiful and itty bitty because she's so old. And what a trooper. She traveled better than all of us!

I'm hitting the sack.

Night!!

For Sheri

2009-06-10T00:29:00.003-04:00

...Cause if she's not gonna have a party to celebrate being done with chemo - then I'm doing it for her.

Hair Epiphany

2009-06-07T20:45:00.003-04:00

It's been a hair kinda weekend. Let's start with Jackie. For Christmas, Santa brought her a pair of her "very own scissors." When I opened the package from Santa, we had an at length discussion about what we use scissors for. A very integral part of the discussion was about how we never use our "very own scissors" to cut our hair. I put the scissors up high and only pull them out under supervision.

So Friday night, she decides she needs to cut up some paper into minute pieces to scatter everywhere. This cutting is one of the things her preschool teacher asked us to do with her to help fine motor skills (since she hates coloring). So she's hacking up a sheet of white paper and I move into the other room (with open doorways and within my line of sight) for all of 2 minutes.

She pops into the room and stands next to me. I reach out for her hair on the left side of her head and see the hack job. I couldn't believe it. Her absolutely beautiful long blonde hair was chopped up. She said she cut the pieces that kept falling in her face.

Now I don't cuss at my kids too often but boy did I go off. Hair is now a sacred topic to me and I take fabulous care of my kid's hair especially now given that I have so little. In any event, I marched her upstairs for a tongue lashing and proceeded to layer her hair to hide the damage. Fastest hair cut I ever did with her sobbing all the while.

She was roundly punished for all of Saturday with no TV, which to her, is the end of the world. We all got through it but I do believe she realizes she is not allowed to cut her hair with her "very own scissors" anymore. I hope.

By the way, when she first discovered her gift from Santa at Christmas, she clasped her hands together and let out a gasp and said, "My very own scissors!" It was cute then - it's not cute now. Santa needs to be kicked in the butt.

Onto the hair epiphany. I decided I was tired of strange women asking me if I was Jackie's grandma so I decided to color my hair with a box from the store. As much as I love my hairdresser Kim, I won't be paying her $180 to color my hair anytime soon. It's not worth it for 2 inches of hair.

So I got my box, follow the directions and with Bill's help, color the gray right outta my hair. Except I hated the color. So I decided the next day that I would get a much lighter color since my hair came in really dark. In actually, I really couldn't tell you what color my hair was before the cancer because it had been foiled for so many years. Maybe a honey golden blonde with some dark brown and light brown highlights mixed in.

So I apply the second round of haircolor Friday night, hoping to lighten the dark color which just isn't me. No dice. My hair won't take color now. Bill swears it removed some of the red highlights but I don't believe him. After 25 minutes, nothing. Not a hint. It looked like I applied the same color as I did the first time.

So I go hunting across the internet trying to find out what I did wrong. Turns out my hair shafts are full or somesuch and need to be clarified before they can take more color. I need to wait for a week or so, maybe longer until my stupid hair can take more color.

Call me shocked because I used to be able to process my hair to kingdom come and it just took the punishment.

So I now have well-hidden gray in too dark hair and it's ticking me off. But at least the gray is hidden.

I will report on the next coloring when I'm on vacation when I next attempt to get my hair shafts to absorb some lighter color than the one that's currently on my head.

Note to all who plan to color their stubby hair: go as close to your color of preference as possible because the hair shaft might rebel. I need to check on this with Kim for verification but I suspect the shafts have absorbed all the color they can right now.

Now it's soft and fluffy but the wrong color. I keep pulling on it hoping it will grow faster :)

The fun never ends...

Bone Pain

2009-06-07T09:21:00.004-04:00

I thought I'd write about something cancer related. Even though it occurred to me that I don't have that nasty anymore. I should change the banner on my blog but I haven't come up with anything yet. Will do soon.

The pain in my ankles and shins gets overwhelming at times. For the first time in quite awhile, I actually considered taking some heavy duty painkillers last night. The ache is incredible in my hips and back. I do wonder when this will end. Or if it even will.

I feel okay when I'm moving around after I get up. But boy is it difficult to get up sometimes. When my feet first hit the floor in the morning, it's brutal. The pain concentrates in the joints from ankle to knee, takes a break for my thighs and lands in my hips. It's not pleasant. Throw in a little sciatica and I'm the resident gimp here :(

I never expected to have this gimping action going on so long after chemo was finished. I'm at 5 1/2 months out now. I do hope this leaves soon as it's making me miserable. I had 6 neulasta shots. The debate is whether the bone pain was caused by the shots or the chemo. Who cares? Just make it go away.

My treatment plan is to workout every day as much as I can - on the exercise bike and elliptical and take a bike ride with Jackie or Bill. Not impact exercise but a gentle steady workout. At times it helps and at other times, I need the help of some Advil.

It isn't much fun when I'm heading down the home stretch to the start of vacation next friday. I need some energy and my bones to cooperate to get everything done. Our car ride to the beach to see Bill's Mom a few weeks ago was absolutely excruciating. That was 150 miles. God help me, I need to last for 600 miles this time.

Maybe they can strap me to the roof!

Been Busy

2009-06-02T21:39:00.003-04:00

And trying to squeeze in a nap here and there because I'm so stinking tired all the time. I still drop off to sleep at the blink of an eye. Not a really safe thing when I'm home alone with Jackie. So I stay on my feet to keep from getting sleepy.

Had blood work done last week to test liver enzymes and counts. Counts were okay and I'm waiting on the results of the enzyme tests. These will tell me if I can still take Tamoxifen. I guess I should call them.

I didn't realize I've been getting marker tested throughout these long months of treatment. I find that pretty funny. I wasn't even aware of it. Walter told me when he did my blood draw last week :) I'm clueless and forgetful. Frankly, if I hadn't written this post I would have forgotten about my enzymes too.

I did mow the lawn yesterday. It kicked my butt. I don't ever remember being so tired after mowing the lawn on such a cool evening. But it helped out Bill who has bad allergies.

Steffie is almost out of school. She's started swim team this week with nightly swims in a very cold pool. I take evil delight in this for some odd reason. Whenever she's giving me sass, I just think of the freezing cold pool and feel better. Evil mom :) We do some serious drama around here - even the cats!

Kate finished her freshman year with great grades at MD. She's home for the summer, working an internship teaching water therapy to the elderly.

We leave for vacation on June 12th right after Steffie gets out of school. We're all excited. The whole crew is going and taking the bikes.

Jackie got her very first big kid bike 2 weeks ago. She's got a pretty pink helmet and she's riding with training wheels like a champ. She still tips over at times (and this is hilariously funny - mean mommy again). I took her out for her first real ride on her own bike with me on my bike on Monday. Jackie followed all my instructions to the letter. She's proud of herself and rightfully so.

Mom's birthday is today :) Happy Birthday Mom!!!

Billy's birthday was Saturday :) Happy Birthday Bill!!!

In honor of Mimi's birthday, I'm posting a Clyde pic

The whole problem with this cat is he thinks he's human. This drives Bill crazy since he says I attribute human qualities to my animals. At least I'm not living in denial. I know who is really ruling the roost around here :)

He's just too cute, isn't he?

Mimi really is Superman

2009-05-27T09:49:00.004-04:00

My Mom was diagnosed with small cell carcinoma last October. Lungs, liver and nodes riddled with this crap. She's been on some of the nastiest chemo for 10 sessions spaced every 3 weeks. We've seen miraculous results.

Her latest PET scan shows one tumor at 1.2-1.3 cm in the left lung with an astounding "ZERO" cell activity. In PETS, this figure is called SUV (uptake value). Her's isn't even registering anything at all. Everything, as in EVERYTHING else is gone.

So, she's Superman. And in honor of Mom, I've changed my cell phone ring tone for when she calls me to this song by Hannah Stinkin Montana because it's just too appropriate to pass up.

I spared you all looking at HM's video and instead, included a video with the lyrics (slightly butchered due to the illiteracy of the original YouTube poster :)

Cheers Mom!!!!!!!!!!!!!!

Just stunning

2009-05-26T21:49:00.000-04:00

Aftermath

2009-05-26T18:22:00.002-04:00

It's quite difficult writing about this particular topic because family and friends read this blog. But I think the "leftovers" after treatment are just as valid, if not more, than the horror of going through treatment. There's a big gaping hole in the understanding of how an individual feels after treatment. So if anyone is feeling overly sensitive, don't read further.

Aftermath of treatment encompasses just about everything a person can imagine. The pain doesn't miraculously go away - in fact, the aches are just beginning. The fatigue gears up and is measured against the incredible fatigue of chemo. Motivation is low, despite having every reason to get moving. Hey, life has passed you by for 10 months - why are you sitting on your butt?

It's too hard. Way too hard. I see why people give up. I understand that now better than I did at the beginning. Because the healing hasn't even really started yet and it seems like another mountain to climb. I feel ages older than my 41 years.

I struggle to explain this to Bill, who inevitably aims to refocus my thoughts on a more positive trail. It has nothing to do with reinforcement from other people; it has to do with me. I get overwhelmed quite easily now. I get tired. I have no stamina anymore. If I do get a burst of energy, I blow myself out for 2 days after. It seems like an endless cycle.

I don't feel depressed nor do I focus on my situation all day, every day. I never have. However, the masses need to realize that people who've been treated as I have been face their mortality every day. Every day I wake up thinking of my ruined chest and wondering if my aggressive course of treatment got all the cancer. Living with that heavy weight on my shoulders isn't easy. It's fine to say "focus on the positive" but in reality, it seems many are incapable of handling me just airing my anger at my situation. Which, I will point out, is my God given right.

I have had two people ask me in the past few weeks if Jackie is my granddaughter. I'm 41. 41 and I've had to deal with insensitivity from strangers, family and friends. I am aware that it's not intentional. But there it is. It's these comments that plague cancer survivors who are struggling to get back on their feet to lead a somewhat normal life among the pieces left behind after a cancer diagnosis.

In this struggle to find some normalcy in what is left, it shouldn't be a given that I should accept insensitivity from anyone. I haven't expressed my anger throughout this whole thing, nor have I struck out at anyone in anger when I've felt my very worst. I've conducted myself just as I would if I was normal. The hitch is that I'm not normal anymore. But the vast majority of the people I deal with are normal and they are failing woefully at being kind and caring influences.

So I sit here, not feeling any better, not feeling any worse. Just wondering if my course of treatment was enough, if I need another surgery and when, and if I'll have enough energy to empty the dishwasher. No pressure, just trying to find a way to meet life head on again. And finding that so hard to do.

Steffie, Bill and Jackie

2009-05-21T11:44:00.002-04:00

Steffie said something to me the other day that astounded me. She said she believes it's a good thing that I got cancer because we all realize how important life is. She firmly nodded her head when saying it and then tooled right out of the room. She holds it as truth, clearly.

She's a perceptive child - always has been. At 12, she's developing into a lovely little lady. But the outside isn't nearly as important as the inside. One charming and heartwarming trait lies in her kind heart. She's always been a softie, more sensitive than anyone else I know. I hope she keeps that trait with a little armor around her to protect herself a little through life.

Sometimes I wonder why people stumble into my life. I have the answer in Bill. His personal strength is astounding. He has handled the rocking of his world with kindness, compassion, and abundant love. He's tolerant of my pain, moodiness, and fear. Nothing makes him angry. He doesn't get annoyed at me when I feel down or pissed at my slow progress. He lifts me up - always. My Billy is truly a fabulous man, wonderful husband, and great father.

Jackie has handled this all so well for a little tyke who doesn't really understand what's going on. We simply tell her that Mommy has an inside "boo boo" and she snuggles close. I can tell at times that she worries because she'll ask me about my day when she's gone to school. She's also experiencing some serious anxiety when Steffie isn't around. Whether this is a product of my illness or normal 4 year old drama, I'm not sure. We soothe her and she moves on.

Jackie seems to want everyone to tell her goodbye before they leave her. Especially Steffie. Maybe somewhere in her head she knows that Sissy will take care of her if Mommy isn't around. Despite the in-fighting and yes, they do bicker alot even at 4 and 12, Jackie knows she can go to Steffie for comfort. I'm glad she knows.

We parents have the job of making our kids grow up friends as well as siblings. It certainly is possible to grow up in a home as strangers to the people we live with - it happens all the time. Not my girls. They need to be strong individuals, strong in character and in the heart and supportive of family. My girls need to be here for each other if they ever have to face the beast if I'm not around.

I'm back

2009-05-19T13:49:00.003-04:00

I've been in a real funk.

Tata removal, chemo, rads, and recovery has really got me bent.

I went for a bike ride today and came to some profound conclusions. I can't ride my exercise bike. I needed to ride my real bike simply because it gets me somewhere. And herein lies the problem with recovering from treatment.

It's too damn slow.

I'm not a slow person. I'm type A, mach 2 all the time. I hit a brick wall a few weeks ago and it was like a heavy weight came down on me. I want this to be over. I'm sick of this. There's no progress. I measure progress in the millimeter size increase of each eyelash and hair strand. It's really annoying.

I want leaps and bounds - not baby steps.

So I spring-cleaned my house, weeded out the "weed from hell," worked on the outside gardens, transplanted stuff, cleaned up whirlies from the maple trees, cleaned up leaves, clipped plants, chased the kids, planted seeds, played softball with the kids and generally got into just about everything to snap myself out of the funk. I don't know if it worked but I feel more focused. And for heaven's sake, my poor neglected house is clean. That soothes this savage beast a little.

In the words of dear Kathy, "it's been awhile since I flashed my doctor." Well, I did that today too. It was a checkup with the original surgeon. Apparently, we are again revisiting the margin issue. He's having a pow-wow with all the doctors involved to see if I need to have that flap of skin removed on the lower right breast. As he put it, I've gone 26.8 miles in a 28 mile marathon so why not finish it? Maybe because I thought it was already finished???????????

I'm not certain how I feel about this. Apparently, they'll take the skin from my tummy and replace the questionable margin area. Seems to me it's like putting on wall paper. But you know, I'll let Dr. S get all involved in checking out this issue because it is an important one. He's directing the symphony of 4 doctors who've had a hand in the stew pot. And I know he's looking out for my best interests. Throw in the fact that he did cure my Mom of BC and he's way up there on my list.

I don't want their stinking tram flap right boob reconstruction. If this has to happen, they need to replace the skin and give me my gel implants and push me out the door. Short and sweet - like an oil change.

The biggest problem with "being done" is we start to look past just one day at a time. I shouldn't have done that - it was a major mistake. One day at a time works much better for me.

Renee, I'm speechless...

If you want to know why, visit this link for Renee's post about the Relay. And my luminary :o)

Thanks so SO much!

Writer's Block

2009-05-14T23:21:00.004-04:00

The latest cancer dish is a complete lack of writing inspiration. It's pretty annoying considering even chemo couldn't bring me down. But this past week has. I'm way tired, had a ear infection, and don't feel well. Just generally unwell, as opposed to anything specific.

I would like to finish my spring cleaning (a month late) since my house has been neglected for 9 months. Getting some stuff done but not too much. My hips make me suffer if I do anything too out of the ordinary. It sucks.

Still looking for that magic wand to make it all better.

Penguins taste like Chicken!!

2009-05-06T15:42:00.004-04:00

Not really but I thought I'd devote today's blog entry to the Washington Capitals and their run in the playoffs. They're currently up against the Pittsburgh Penguins in the semifinals for the Stanley Cup.

This picture says it all.

A poster from the best Maryland sports board on the web went to the game the other night with this sign. He even made ESPN!!!

So I decided this guy, and the Caps, deserved a blog post solely for them. Good karma being what it is - we can't pass up every opportunity to send good vibes to Ovie and the Caps.

Do not, under any circumstances, Google "penguins taste like chicken" to try to find this picture. You will only end up with literal observations of people who are really concerned with whether penguins do, in fact, taste like chicken. I didn't read deeply enough into any entry to determine whether people have tried this or where one might find a penguin for dinner.

Go Caps!!!

Hugs to you all. Thanks for your props, comments, and suggestions. Together we can make this manageable.

TTFN!

Some nausea help, maybe?

2009-05-05T16:38:00.004-04:00

I researched an article yesterday about motion sickness remedies, specifically the over the counter variety. I came across something called a relief band which stimulates the nerves in the wrist, transmitting nerve impulses to the rest of the hand. For some reason, this helps with nausea.

Anyway, I read through alot of reviews on this and discovered that some individuals use the wrist bands to help with chemo nausea. Can you imagine not having to deal with the awful constipation that comes with chemo? My Mom isn't usually game to be the guinea pig for new things but I talked to Dad about this last night. She might have to be the experiment for her Tuesday treatment.

I also found something called Hylands motion sickness pills. Now herbal remedies need to be used carefully by folks taking chemo but this is something to consider. I used Hylands on Jackie when she was a baby for tummy upset and teething. And I've used the products myself too. Something else to consider.

I decided I want to get my mom with an acupuncturist although when she reads this, this will be the first she's heard of it :) She takes a chemo called Sysplatin and the way I understand it, the "platin" chemos cause hand tremors that can be pretty debilitating. Writing, applying makeup, cutting (no knives, Mom!!) and putting jewelry on is a challenge. We understand this is temporary but anything to help her should be considered. Another guinea pig moment, yes, but who cares if it makes life easier for her? Will keep you all posted on my efforts to convince her this might help. That should make for some entertainment, huh? Might even rank up there with the voodoo doll.

Boring day, did nothing spicy. Haven't found that magic wand that erases months of fatigue and blahness. Was so tired today, you wouldn't think I slept for 7 hours last nite. Maybe it's the broken sleep that just piles on and on. My hips really plague me at night so I don't sleep well at all. It frequently feels like my back is broken so I can't turn over. Just peachy.

Another bizarre aspect of all of this is my complete loss of appetite. I can go all day with nothing, which I know is awful for me, and then be hungry for dinner. I'm just not hungry. Everything still tastes bad. I force myself to drink a Slimfast to get something into me. Too bad this isn't translating into a svelte figure. Tamoxifen is taking care of that. The hot flashes are developing a more predictable pattern and aren't lasting all night anymore, thank God.

Eyelashes are really thick but still short. Eyebrows back in although they aren't as long across my brow bone, if that makes sense. Hair, pah! I'm sick of this hair stuff. It's going slow which is downright annoying.

Rain, rain go away. Really. It's still Guatemala here. The highlight of my day was watching the grass grow. And taking a nap. yipppeeee for me.

TTFN

Book titles

2009-05-04T20:11:00.004-04:00

Too busy to write, too busy to update this blog, too busy to do laundry (yay! I think?!) and too busy for naps. I'm tired here and my body telling me to rest in the form of a splitting headache and sore hips. I need to listen.

We really had a busy weekend with softball, yard work, catching up Stef with missed assignments and a party on Sunday. All last week was a disaster with repeated doctor visits for Steffie and her out of school. All of this adds up to a frustrated writer who made no money over the weekend. I usually rely on Bill to direct the symphony when I need to catch up. Except the symphony was all over the place.

It's pouring rain here, like Guatemala pouring. You'd think that would allow for some quiet time around here but Jackie was bouncing off the walls today. Good thing she's going to school tomorrow or she'd be duct taped to wall. Not really but that sure is a funny visual :)

I wrote some more of my book last night. It really did surprise me how upset I got filling in the details from my surgery last year. Reliving that time was quite painful and boy did I forget alot. Bill's playing with a full deck so he helped me. He also wants me to consider putting the book together in an order other than chronological. I need to think on that. I've read so many books and many do seem like memoirs. I want mine to be more. "The practical chick's guide to having breast cancer and kicking it's ass while still remaining moderately sane and functional" Too long, huh?

I'm sure "Cancer is my bitch" is taken. Wait a minute, I'm checking that. Forget it. Some guy has a website and makes shirts. Guess that title is out of the question too. The least of my worries is the book title but you know, sometimes one needs to dream. I can adamantly state that the cover of my book will not be pink or I will kick the publisher very hard in the shins AND butt. I don't do pink - I NEVER have done pink.

I read Deanna Favre's book. It was well written although I got the ghost writer sense. It bugged me. I never felt like I got into her head and that began with never knowing what type, staging, etc., of cancer. It felt aloof. She did have a great story, especially being Brent Favre's wife while she was undergoing treatment and still participating in everything required of her like a trooper.

But hell, is breast cancer the same for the rich and famous as it us for the plain old folk like me? I don't think so. That's a pretty prejudiced statement but I know the financial worry, despite my good insurance, has added some gray hairs to my bald head. I'm being a bitch again but so what. If anyone wants to set me straight, go right ahead. This is an extremely underdeveloped thought up there. I'm open to debate.

I don't want my book to be filled with cliches. I want it to be funny and unique. I'm not Lance Armstrong so I don't feel I need to give everyone a pep talk. I want to convey a story and show how we bungled our way through it. Practical advice, tips, and help as well as deeply personal insight. How's that for a barrel of worms?

I read through what I wrote last fall after my first chemo treatment. My computer went in for service for three stinking months and I didn't have the book saved to USB so it went unattended for awhile. I don't really know if I cried reading it because it's about me or because it's moving and emotional. Whatever. I'm wandering aimlessly with these thoughts here :)

I think my brain needs a break. Ciao, arrivaderci, adios, tata for now!!

:)

My B*tch Hat

2009-05-01T20:36:00.010-04:00

I wanted to say a special hello to everyone who's popped by for a visit. Welcome and I'm so very glad you came to read my ramblings. You're all added to my blog roll so I'll be avidly reading what's going on in your lives and I'm quite excited about it. Giving a shout out to Alli, Cora, Beth, Jill, JD, Ronni and Daria. Please kick me if I forgot someone new. And all those who've traveled here from Renee's blog (Toni), hello and hug that sweet lady for me.

And everyone who visits needs to do a happy dance because today is the day that Deb Lattimore finished her chemo. I imagine she's doing a jig for finally being done! How you do a jig after chemo escapes me but I know she's got to be thrilled!

Amazing how time ticks by here. It's May 1st. I'll talk about how great the month of May is another time.

I need to put on my bitch hat for a few minutes.

We went to the pediatric urologist today with Steffie and got good news. The doc thinks the repeated UTIs are just "nuisance" infections. Most kids don't get them like this at her age but he ruled out heredity, vitamin or food issues, or functional issues (these are proper voiding habits, cleanliness, etc.) He doesn't believe it's a physical problem either. We liked him - he was great. But his assistant and me didn't hit it off too well.

He took her history and I came armed with test results, sonogram results and records. He praised me for that - I learned this exercise from BC - come prepared. Anyway, he asks me if we had VCUG results (this is the cathether with the dye test that I've been resisting since it's not recommended nor will they sedate her for the test). I said no, we don't have them. And he asks why not. I explained I couldn't find a place to do the test with her sedated. He tells me it's not painful. I tell him it's traumatic, especially at her age. He shakes his head at me, looking at me like I don't have a fricking clue. I should have pulled off my shirt, showed him my chest, and told him what I know about pain. I hope he had really bad indigestion at dinner. And lunch too.

So I'm getting my hackles up. And thinking this asshole doesn't have a clue what he's talking about unless him and his urology resident buddies stick cathether tubes up their wee wees for fun. I plainly said, "I am her mother and I decide what is done to her." He beat feet out of there. Strange that the urologist confirmed our suspicions, also said he realized the test was traumatic, that the test WAS NOT necessary and we had made a good choice. Two out of three doctors said it wasn't needed.

So there, you weenie resident. You were MY bitch today.

The plan is to do a renal scan of Stef in the next week or so to check for kidney damage. The doctor believes there's no damage to her kidneys but he wants to be sure. She hasn't had fevers or pain in her kidneys. This is just to rule it out because a treatment plan would be different. Right now, she's on her main antibiotics and then a maintenance dose for a year.

I also addressed her vitamins and probiotics to help restore her bladder's lining and prevent yeast infections, boost her immunity, etc. He said that there is nothing scientifically proven, no scientific studies showing the benefits. Blah to that. He was so nice in comparison to his assistant that I kept my bitch hat under the chair. If probiotics don't work, then why are they used quite frequently with IBS and colitis patients after all else has failed?

I've been giving her yogurt to help combat this on the advice of my dear Vicky, who is VERY SOON going to be a post-college, ready-to-practice-after-her-internship nutritionist. I value her advice for my whole family as well as her daffodil growing gift! Alternative treatments do work and are important. Especially taking the very best supplements if you need them. We purchased New Chapter vitamins for Steffie called "Every Kid." These are naturally derived, as opposed to the chemical and synthetic vitamins found elsewhere. I'm taking the woman's variety and found them at a place called vitacost.com for easily 25-30 percent off. Less is never more when purchasing vitamins. I'm striking a balance between her maintenance antibiotics and adjusting her diet to remove processed sugars. Stef had a COW today when I explained this - she's mourning her fruit rollups as I type this.

Mom is taking them too. If we both become Tiggers, bouncing around with unlimited energy, I'll let you know :)

Swine flu. I have to talk about this. We, most of us, have compromised immune systems and while we don't need to be panic monkeys, we do need to be careful. Tell me if this equation makes sense. Don't worry but they're closing a nearby high school until further notice. Don't worry but an elementary school in Laurel is closed for 14 days. Why 14 days? 14 days is alot the last month of school.

Limit your contact with other people, limit shopping or let others do it for you. Hang out on your own front porch, in your backyard and around home. Let your loved ones do your grocery shopping during the least busiest times if you can. Practice the cleanliness routines we all know to prevent germs spreading. WE DON'T NEED THIS NOW!!! All of us have weakened immune systems so please, dear friends, be careful. While this hasn't proven to be as deadly as the outbreak in Mexico, it's still dangerous for people like us who are in the process of chemo, rads, or recovering.

I want to rant for one more second about how I wanted to go back to church this weekend. I'm avoiding it for now, despite not wanting to, because I need to be careful. I want to see what happens around here, how they handle it, where it spreads, etc. I live directly where the sniper attacks were a number of years ago. These folks who run the state aren't the most adept at handling crisis situations.

Hugs to you all.

Bitch hat is off :)

The Anti-rant

2009-04-30T23:47:00.005-04:00

I need to clarify my rant.

I'm not mad at anyone, nothing triggered the tirade - it's just a culmination of months of this BC stuff and railing against the fates.

It also embodies how I feel about insensitivity, lack of empathy, exclusiveness, and lack of tact. People suck sometimes and they suck worse when you have cancer. We're hypersensitive, because our emotions are raw almost all the time. Being tolerant is a damn strain.

So no, I'm not angry. No, I don't feel like I got it off my chest. I wasn't mad to begin with. Actually, I will say the trigger might've been washing my hair yesterday. It brought to mind something from a few months ago - someone said something to me about having no hair. Along the lines of "think of how much money you're saving on shampoo." Ok, sure and I bet it's adding up in comparison to the $1000s that are being spent on my care. Do I CARE about shampoo?

It's relative.

Anyway, I'm not mad, per se. I'm mad at stupidity.

On to the real life. Sit down for this one.

Stef's softball team won last night. 9-0. We were shocked, as in bug-eyed because these girls have shown a complete lack of concern, effort, listening skills, motivation, absorption and just about everything else. Now admittedly, the other team wasn't that great but at least they could field. Bill and I were so excited we chattered about the game until 2 a.m. We couldn't sleep because we were so happy for them.

We got skunked the first 2 games, by numbers that are too high to mention. Last night was a nice surprise and all because 2-3 girls decided to take the bull by the horns and be leaders. It was great. In the rain, no less.

Want some funnies? We had our very first run of the night taken away because the player walked in from 3rd and didn't touch home plate - she just headed back to the bench. The look on Bill's face was absolutely priceless. He was no less than stunned. I guess we assumed they knew to touch the plate. So every walk after that, everyone chimed in with "Touch the plate."

A few kids asked if they could wear raincoats on the field. We checked and the ump said okay. (There wasn't a wall nearby to slam my head against!) So we're ready to field and I pipe in with, "You know, you're raincoat will be ruined from the infield dirt. It doesn't come out." Off fly four pink and purple jackets at record speed.

Our pitcher won't wipe off the wet softball on her pants or jersey. We laugh uproariously at this, of course when the girls can't over hear.

We had a tag - a TAG to get someone out. Bill and I were jumping around we were so happy. Why, you ask? Because up until last night, we never even got a person out. Throwing to base, tagging, or catching a pop. All was completed with aplomb last night and we have NO IDEA WHY.

On the Stef front, we have an appt. with a pediatric urologist tomorrow. Her infection is back and she had a regular pediatric appt. on Tuesday. She's just okay, not great and has missed some school this week due to the appts and stomach upset from the antibiotics.

I'm down to one scab on my tata - healed up almost completely. It's still tan in color but for the most part, I'm healed. The inside swelling seems to have lessened quite a bit. And my lymphedema is less.

The hip pain is quite awful. Not constant but it feels like a grinding when I stand up or try to roll over in bed. If you've ever had bursitis, it feels like that. Pain patch isn't making much of a dent but it manages it a little.

I'll confess what everyone else might not be willing to confess. I'm a little worried about the swine flu. Me and my beleaguered white blood cells aren't up to pig wrestling right now.

Be well everyone. Hugs to my longtime blogging friends and hellos to my new friends. Hello Ernie in France :) I hope you all don't think I'm a psycho crazy woman. I just tend to speak my mind, as many of you know :)

xoxoxo

Cancer rant

2009-04-29T11:54:00.013-04:00

I firmly believe everyone needs to expend some anger on occasion. And today's my day. Not because I'm in a bad mood but because I just wrote an article addressing "how to greet a cancer patient" for Ehow. It ticked me off for a number of reasons. Let's begin with common sense.

It should be common sense that cancer patients need an extremely clean environment. It's a given, right? So why do we need to remind everyone? Is it because everyone is so self-absorbed? I think so.

After 8 continual months of treatment, I AM NOT okay right now. I don't feel well, I'm tired, I have bone pain, I hate my lack of hair - in short, I feel like crap. It's better than last week but it by no means is good. I'm disgusted with all this and the seemingly never-ending feeling of being sucked into a quagmire. It's gotten REAL old at this point.

Every time I think of cancer cliches, I see red. The dumb things people say just never ends. This isn't because it's happened to me lately. It's just principal. Why should we have to rant against the stupid things people say to us as cancer patients? Aren't we going through enough already? The excuse of "they just don't know any better or even what to say" is just that - an excuse. Get a grip. Next time someone tells me something, I'm going off. Be warned.

Forrest Gump's Mom had it right - stupid is as stupid does. This is taking up a full chapter in my book.

I watched Steffie crush multiple boxes so I could get the recycling together yesterday. We had a mound of boxes because we missed last weeks pickup. What I really imagined was her crushing hundreds of pink ribbon lapel pins and frou-frou pink BS that drives me crazy. Bonfire, here I come.

Hello? Where did everyone go? I'm not okay. Repeat after me - I'm not okay. Everyone who cares for someone who has cancer needs to get a fricking grip and realize the fun and games don't end when treatment finishes. The hell just begins and a helping hand would be greatly appreciated. Fatigue sets in with a vengeance, motivation and self-esteem crashes. Recovery seems like an endless abyss after going through the hell of 8 months of surgey and treatment. And guess what? You have to live with the fact that you didn't help, you were too busy, you were afraid to address your own fear of cancer. YOU. Can you deal with it?

Don't lie to me. I know I look like a cancer patient. I just finished treatment, for God's sake! Remember my beautiful long hair? It was long for a reason - because I looked good that way. I don't look good with short hair. It sucks. Along with the plethora of other physical stuff that isn't the same, believe me, you don't want to mention this to me. Not a good idea.

My kids have a mother who is recovering. For God's sake, cut them some slack. They live with me and while I try to keep things normal, things aren't normal and haven't been for awhile. Seeing a parent in pain regularly and sick is rough on a child. Please keep you own child from harassing my kid over stupid stuff. Or you're gonna hear it from me. Keep your own and your kid's petty bullshit to yourselves. If you can't, then I will do it for you.

Oh yea, and guess what? You can feel like shit and still be an effective parent. Let ME discipline my own children, MY WAY. Guaranteed my kids are better behaved and more aware of proper behavior than yours. Why is that, you say? Because my kids know about compassion, something sorely lacking in this world today. And my kids know I'm their PARENT first and then their friend. And guess what else? Their meltdowns have a reason - a sick parent. Your kid's melt down just because you're a crappy parent.

Don't address what is different about me. Believe me, I know it. I don't want to hear how you're losing weight. Try taking 4 months of steroids and see if you've retained your figure. Throw in some Tamoxifen and then we'll talk. I'm exercising every day. I'm toning muscles that haven't been used for anything other than sleeping for 8 months. Get a fricking grip. At this point, I don't care if you look like a Vogue model.

My boobs aren't an issue. Everything else is. Kindly move your eyes above chest level and look me in the eye. If you want to see the results of breast cancer, I'll gladly show you. I lost my modesty months ago.

God help the policeman that stops me because I don't have the chest strap across my chest when driving. And God help Md's governor Martin O'Malley if I get a ticket. I use the lap belt only, I'm an adult, and I pay my taxes. It hurts my boob. Wanna see why?

Cancer isn't free. It costs money. Copays and prescriptions cost a ton of money I would otherwise be spending on my kids. I don't have anything extra. So spare me your own "I'm poor" pity party. Trying spending your vacation money and savings on drugs and copays that you will never see again. All to keep yourself alive. It's great fun. I'm thinking my out of pocket expenses exceed $4000 for a one-income family. My medical treatment has to be over $500,000. Yes that's five hundred thousand. Try having that hanging over your head for awhile and then we'll talk about money.

Wigs suck. They aren't an answer to missing hair for me. Don't ask me anymore why I don't wear my wig. It's hot as hell and makes me have hot flashes on top of my hot flashes. I don't look like me at all. Add that to the bonfire.

Don't you dare take my picture. This is my nightmare, my life, and my body and mind that have been trashed and dragged through the mud. It's not cute, I don't care how cuddly it is - I want nothing to remind me of how shitty I look and how shitty I feel. It's beyond unkind and no one should take a cancer patient's picture unless they ask. Call it vanity or whatever. Take a walk in my shoes for awhile - a real walk for once. Get into the nitty gritty of imagining how YOU would feel in my shoes. And use your God given common sense.

I'm entitled to my pity party. Try waking up everyday, knowing you've had cancer, are going through treatment or on the road to recovery. Try having a daily reminder that your femininity has been shredded and you feel like shit. Try living with the knowledge that you face this beast every day and that it might end your life. Recovery involves both the physical and mental coping and IT IS NOT EASY. If you can't deal, then go away. Literally.

YES!!!!!!!!!!!!!!!!

2009-04-28T21:30:00.005-04:00

The CAPS WON!!!!!!!!!

Can you say "Semifinals?"

YAYAYAYAYAYAYYYYYY!!!!!!!

Kids get sick

2009-04-26T09:44:00.002-04:00

They do. And I think one of the hardest parts of being a chemo/rad patient or a recovering one, as is the case with me, is being around the germ factories that are our kids.

Jackie was sporting a 103 degree fever yesterday. Out of the blue. Swollen neck glands too. She was lethargic and lost her appetite. Not my Jackie at all.

So here's my baby, sick and whiny and droopy. And I'm at war with myself on whether to snuggle her and comfort her as she was feeling puny. Of course, I did. I didn't really hesitate at all. But I don't want to get sick and my immunity registers at the "I suck right now" level.

Luckily, I'm not the fever type. She is though. And this morning, she's saying her nose hurts. I have never heard of such a thing. She's holding a wet paper towel to the outside of her nose. For the life of me, I just don't know what this means. It's almost funny it's so bizarre. Should I wake up Bill? I asked her if it hurts inside and she adamantly tells me no. I'll keep you posted on Jackie's nose.

Her fever is down. Tylenol suck for fever reduction but it's all she can have. We suspect my use of ibuprofen when she was a teeny baby may have caused an intussusception (fold of the intestines). So my arsenal of meds has definitely been reduced.

My kids also do the funky thing of having an alcohol smell to their breath when they are sick. It's ketones or somesuch, as explained by the Doc. A good indicator that they are sick. Like a red flag flailing in front of a bull.

If anyone has any opinions on Jackie's nose, I'm open to help with this. She definitely didn't put anything up there and she did have a runny nose yesterday.

I'm going to enter my plastic bubble now ;)

Cutting me loose

2009-04-23T11:46:00.003-04:00

Almost.

Had a oncologist visit yesterday and a blood draw. Got my tamoxifen prescription. Not sure how I feel about that with the host of side affects. Will keep you posted on that. All I need is a few more hot flashes to brighten my day.

The scoop is this. I'm done. Cut loose after one month of taking T to check my liver enzymes. My oncologist does marker tests so I will see him every 3 months for however long he feels I need to. I'll be on the T for 5 years.

One thing did come up with my question about estrogen positive tumors. I asked about my girly parts and why that wasn't being removed too. He said that is something we'll address later but than the body needs some estrogen at my age. Sue, maybe you can help me understand this. Are ovaries typically taken out of estrogen positive patients?

Apparently, these next 6 months will glean whether I'm menopausal or sterile. Sounds like fun.

I get to keep my pain patches, for now. Dr. K is always positive and seems to think this arthralgia will go away. I remembered the name!! Maybe not spelled right but I don't care - it's my blog anyway. Back to Dr. K - he wants me to be comfortable to recover and also wants me exercising. So I am. Good bunny that I am...

I didn't realize the fentanyl is such a strong drug until my visit yesterday. Even at a low dose, it gives serious withdrawal symptoms. Guess that might be why I couldn't sleep last week when I dropped my patches. Learn something every day.

BP was a kicking 90 over 77 - back down almost to normal for me. I did get Dr. K's okay to just hang with him for a long while so I don't need another checkup with my GP. I do have to do a yearly gyn exam in July. The panic monkey sometimes rears her ugly head and worries about errant cancer cells ending up on my cervix. I had dysplasia for about 6 years after Steffie was born but I've had clear paps for the last 5 years.

Head is on straight, focus is coming back. Cranked out 17 articles this week and I'll actually get a small paycheck friday. I did sell a whopping real estate article last week - $200 for an article is very good as a ghost writer. Sure made me happy. I'm hoping my productivity level keeps up. I need to get out of my hole here and back on track with the rest of the world.

I gotta admit, even though I'm done, I'm almost phobic about germs. My counts are doing better but things just SO gross me out now. Like door handles, shopping carts, snotty kids (even my own), public anything. Yuck.

Still wondering if I'm going to get depressed. Haven't seen it yet.

I also get cut loose by my rad nurse on Monday if my tata heals up. The burn is down to 2 x 1 inches and is starting to scab. Airing it out and not using the shower or getting it wet has made all the difference. No, I'm NOT stinky! I'm taking a tub bath instead :)

I conducted an experiment at Vicky's request. I applied Aloe straight off the plant to my burns Tuesday night. Overnight, OVERNIGHT, the burned area began to scab and heal over. It easily improved by 1 cm around the circumference. Since then, the sticky wound feel is gone completely. This thing has dropped from being 5 inches around to well below half that.

My supposition as to why radiation specialists don't want women to use this is that the ointment given for open wound treatment contains antibiotics. I get it but I do know the aloe made a miraculous difference. I'm using it multiple times each day. Good thing the plant is big :)

I didn't get the impression that many people blister as badly as I did. The healed skin looks pretty tan at this point and they tell me it will lighten to regular skin color. Not quite sure if I believe them yet :)

Be well everyone. Have a good day!

Hair, nail, eyebrow and eyelash report

2009-04-21T22:20:00.003-04:00

Haven't bitched about the hair lately or any other annoying girly things that are currently broke. So I thought I would fill you in.

My hair seems to be at about 1/2 to 3/4 of a inch. I think I rub nioxin more on the top than the sides so it's growing better up there. I've since figured out I need to pay more attention when I'm getting ready for the day and I'm spreading it more evenly around my head. My prediction? I'll be buying my first box of hair color in a month. No WAY am I paying my wonderful hairdresser $180 to color the twigs of my hair.

Eyebrows are back but all over the place. Before this, I was blessed with the most perfectly shaped eyebrows. Maybe 4-5 plucks of hair each week and zoom! Not so right now. They're all over the place. And spiky in places. I don't want to even try to shape them until things straighten themselves out.

Drumroll!!!! I have eyelashes. Very thick ones. Coming in pretty well here. Bill seems to think they are about halfway back but he lost his glasses. He doesn't see up close to well and being the great guy he is, he might just be full of malarky. You know how people hold a book or paper far away to read? That was Bill checking out my eyelashes last night. Pretty funny :)

Nails are a mess. They lasted all the way through chemo and cracked and peeled at my radiation midpoint. The horizontal ridges are about halfway up the nailbed now. I guess the nail will strengthen when it completely replaces itself. I also noticed they aren't growing as quickly as they did during chemo. Splitting and peeling but not discolored under the nail. I got lucky (Renee - I hope yours are healing!)

Now my big toe nail is another story. It's gonna do something but I don't know what. I covered it with fire engine red nail polish so I don't worry about it. And that works just fine with me.

This whole thing is quite degrading. I'm sitting here thinking of Armand and how he said after treatment, he plans to make "cancer his bitch." Well, right now, I'm still cancer's bitch. And while this makes me smile (Armand, all DAY I've been thinking of this and smiling - I even told my Mom!) I'm heading away from this worry but slowly. A most frustrating situation for a Type-A personality such as me.

Giving a shout out to wonderful Sue who FINISHED RADIATION TODAY!!!!! Thank God you're finished, Sue. Just Thank God!!

Thank you, my wonderful blogging friends. I sincerely think all of us together are working to keep each other out of therapy!

XO

Too tired to post

2009-04-21T00:09:00.003-04:00

Dumb thread title because here I am, posting. Who said logic has any place in a cancer patient's life?

I haven't graduated yet from BC patient to real person again. Maybe that will miraculously happen when I take my first tamoxifen pill. Or maybe when my fried tata heals enough for me to not require burn treatment anymore. I do that tomorrow again as well as keep Mom company during her own chemo treatment. Love to visit the gals on the ward. A truly inspiring bunch of people!

I get to go see the vampire on Wednesday for a blood draw (hi Walter if you're reading this - I will bring candy!). Then a meeting with the oncologist. Don't know what he'll say or do but Bill will be there. He checked me out a few weeks ago so I can't imagine it will be more than getting a script and giving blood.

I found the recipe to curing the open burns on my chest. First, the burns come from what is called a boost - a concentration of chemo on the tumor spot. They used something called a bolus (??sp) to draw the radiation to the surface. All this equals fried tata.

TMI alert - don't read if you can't handle the deets.

So here's another friendly tip from your friendly neighborhood breast cancer unsolicited advice department. Burned tatas heal faster when you stay out of the shower and expose them to air. I started sleeping with chest exposed friday night. The burns almost cured overnight. Then dumb me gets into the shower and ruins all the hard work I did while sleeping. So it's tubby time and no water on my right boob until this thing cures up. If this falls under the TMI, sorry. Just passing along the minutae that now forms the basis of my life.

Bone pain report: it still hurts like an SOB in my hips. Still on one pain patch. And I'll report that I had excruciating bone pain from the mid-shin down to the ankle. It was like Edward Scissorhands was carving up my shin bones. Not happy about this unknown side effect of Neulasta or chemo or the evil black cloud that is hanging over my head.

I'm done. Good night - love to you all.

XO

Drama

2009-04-17T23:39:00.002-04:00

Among the many things that have happened today.....drama.

Yes, drama. A big surprise, right?

In the form of someone hacking into Steffie's AIM account, changing her password, and apply for identity on a Bebo account (AOL's version of myspace). This person sent out a whole bunch of e-mails and who knows what else. So I cleaned this mess up and contacted Bebo to blast them for allowing this kind of crap. We'll see where I get with that.

It is extremely difficult to get a kid to understand that they aren't anonymous on the computer. And that giving a password to your BFF is still dangerous - not because that child can't be trusted but because we don't know the security situation on her friend's computers. Argh! Logic doesn't prevail sometimes, no matter how hard I try. My fuse is very short these days so I'll only explain 5 times before I blow my top. As opposed to the dozen times I would explain before.

It's the arguing back that makes me nuts. I have a bar of soap with her name on it and she knows it now. Maybe she'll remember the taste of Dove soap instead of me asking her to be respectful and reasonable.

We're gearing up for a busy day on Saturday. Stef's first softball game and her party - her first with boys and girls. She's very excited and we're having it at my Mom's house. We spent the day cleaning and moving stuff around so there's plenty of room to dance. I'm just wondering if they actually will dance :) They always eat so at least we can keep them occupied with that if some of them go shy on us.

Jackie is extremely excited about this party because she gets to see all Steffie's friends. She loves friends. I think of Jackie going full time to preschool next fall with very mixed feelings. I was hoping to relish this year with her going part time - just Jackie and Mommy time before she really becomes a big girl. This whole year has been ruined, and our M&J time, by breast cancer treatment. It's one of those things I have to accept but it makes me extremely angry when I think about it.

So I'll stop thinking about it.

Steffie's 12th Birthday

2009-04-15T22:12:00.002-04:00

Stef turned 12 yesterday and amidst the celebration of the start of her final year as a tweenie, I'm filled with thoughts of when my oldest was born. She was a delightful, happy baby, a precocious toddler and preschooler, and a warm and loving child. She still is. She has a heart of gold, a soft spot a mile wide, and a genuine kind heart. She's a good kid and a tribute to her family.

When I think of this long road to recovery, I have to say that the driving force for me from the very beginning has been to be able to help my own girls if they ever have to face the cancer monster. I don't want them to be alone. I want to be with them every step of the way 20, 30, or 40 years from now. Steffie had great fear that my cancer and my mother's BC 6 years ago meant she would absolutely get cancer. Of course, this isn't true and although we've told her, this lurks in her mind.

I don't want her to be afraid. I want her to live and enjoy her childhood. I want her to have her mother back the way I was before. I know that's not physically possible but I so want cancer not to rule our lives anymore. I don't have high expectations for a fast recovery. I'm taking my time. I just want to know that there's an end to the road.

I took the excessive but I feel, quite necessary step of having an elective left mastectomy to prevent revisiting this nightmare in the future. I gotta admit, I'm gonna be downright pissed if this cancer comes back. I mean, LIVID. If that seems dumb, then so what?!

I've been calm, except during my princess moments. I don't cry, unless I've got a damn good reason. I've managed to be alone with myself and not freaked out for about 3 months now. Coping is something I can do. I just don't want to ever, ever revisit this time in my life again.

That's a conundrum because my Steffie has been growing and changing right before my eyes during the biggest crisis of my life. So has Jackie. So has Kate. And while I feel the immense pressure to blot these months of my life out, I can't because of my kids. I don't want to forget these important days, their important achievements, or the daily changes in their lives. Steffie is growing into a delightful young lady. Jackie is becoming such a big girl and Katie, she's such a good student - she's just amazing. Watching her work her way into adulthood, making decisions, and still realizing she needs us to help sometimes warms both Bill and me deeply.

I need to figure out the answer to my question of how I save these memories and pack away the ones I'm tired of - the cancer ones. Maybe there's a recipe somewhere...

Pillow Tents

2009-04-13T19:58:00.003-04:00

Get the visual going here...

My right boob is fried. A lovely hot magenta. And it's raw and oozy.

So I'm in one of Bill's t-shirts and I shoved a little heart-shaped pillow up my (his) shirt to make a pillow tent. Keeps the fabric from rubbing against my chest :)

Alternative uses for all the pillows I got on the infusion ward.

See? I'm all for passing along every kooky coping tip I can come up with :)

Hot Magenta Part Deux

2009-04-12T18:59:00.003-04:00

Now it's the front of boob which is sending these unbelievable shooting pains into my ribs and across the front of my chest. I had 8 directed treatments on the tumor site and boy, did they fry my chi chis crispy.

The fun part has been the skin sticking to my camis. That's been a hoot. So I glopped my silvadene creme on it and covered my poor robo tata* with gauze. Now the gauze is sticking to it. I need to make a boob tent on the front of my shirt so nothing touches my chest. Anyone got any ideas? (*term shamelessly stolen from Kathy)

We had a fun day with eggs (lots, and lots of eggs) and family time. I imagine we probably exceeded the acceptable level of jelly beans that one person should consume in a days time many, many times over. But the girlies had fun, the dogs didn't get into the chocolate, and none of us have thrown up. Easter is fun for mommy and daddy too.

I'm still waiting for the letdown - ain't seen it yet. Hoping it doesn't happen since I really want to get back on track with life as it should be. I'm sure I'll be most frustrated by fatigue but I have a plan. It's simply instituting my plan that might be a challenge. I do know from Kathy and Renee that fatigue from this can be debilitating and quite disruptive. I'm learning from what both these dear friends have gone through and taking it easy. I think the biggest detriment to a cancer patient is expecting our energy levels to be what they were before poisons and chemicals were pumped into our systems. Add being cooked like a well-done steak and it isn't a merry picture.

So where do I go from here? I'm intending to deeply investigate the dietary needs of a recovering BC patient and I'll post my findings. I'm heading first for a book written by a phenomenal lymphoma success story. This man was given 6-8 months to live and chose to evaluate every piece of information he could about diet affecting cancers. Sixteen years later, he wrote his book. For the complete life of me, I cannot remember his name. I know it's hypenated :) Chemo brain again.

I just had a little epiphany and remember the guy's name. Here's his book: http://www.amazon.com/Anticancer-New-Life-David-Servan-Schreiber/dp/0670020346

Heading to the bookstore this week to pick up a copy. I did alot of investigation when my mother was diagnosed. It's very telling that in many other countries the BC rate is so low. This has to be diet related but also the genetic effects of diet over many generations. Our crappy American diet is giving us disease after disease. It's time for me to wake up and listen. I think this book might be a good place to start the next step of this journey.

Happy Easter everyone!

I'm done!

2009-04-10T22:17:00.004-04:00

DONE.

SO I'm looking for the big eraser that gets rid of all the pain and anguish of the last 9 months. I can't find it. But it feels like it might be somewhere nearby.

I finished radiation today and as promised, I left that place with the biggest grin on my face instead of the tears and nerves my doctor expected. You cannot measure the relief I feel, the incredible sense of wow! that I have finished all the stinking, awful treatment that was listed on my "Get Rid of Sharon's Cancer" checklist.

I've still got Tamoxifen to take but hell, I can pop a pill. I get to be Doc visit free except for a skin checkup on Thursday. I'm healing like nobody's business here. Nice smooth skin under the blistering. I've even graduated back to Aquaphor in some spots. I was absolutely bound and determined to finish this before Easter and I have. I made it by 2 days.

I don't have any plans to recover lickity split. That's not gonna happen. I'm still exhausted, still have residual chemo pain in my hips and back. I have itty bitty eyelashes and my eyebrows are choppy but there. My tongue still feels funky and my taste buds aren't back. My brain is still like swiss cheese. And my head still gets away from the rest of me with grand plans for keeping busy and getting things done.

I'm SO ready to move away from this.

I got my daffodils from Vickie's yard today with help from Poppa and Jackie. Thanks Vickie!! My celebration daffodils :)

The salt shaker...

2009-04-09T19:25:00.000-04:00

...has magically reappeared!!!!!

The cleaning ladies found it :)

I just don't know what to do...

2009-04-08T22:51:00.004-04:00

about Steffie. She needs the test but I'll be damned if she'll be having any procedure such as the VCUG without being sedated. I'm pretty upset right now.

Especially because I googled the procedure and up comes a result of a study done to determine whether children react adversely to the test without sedation. Guess what? They do.

There is a pediatric oncology dept at Children's Hospital at DC. Our own pediatricians are part of the Children's network. The hitch is the woman in the radiology dept at Shady Grove Hospital. They won't do it - despite Stef's own doctor and our insurance agreeing to it.

We NEED to find out what is going on because if this blossums into a kidney infection, and I think it has a few times, that's scaring on the kidney. At her tender age, more recurrences could result in damage. The other thing is the constant use of antibiotics - she's been on the things since November.

I'm ready to take the alternative medicine route. Ramp up the vitamin C, pump even more water through her (she's above 80 ounces a day) and who knows what else. Maybe I'll have her chew on tree branches or something.

Bunnies and snakes and birds - Oh My!

2009-04-08T10:25:00.005-04:00

Jackie has an egg hunt at school today and since she's usually not a Weds. kid at school, we were frantically making a bunny ear hat for her to wear this morning. Cue her hatred of coloring. In the morning, this made for a nasty little miss.

However, she did color the inside of her paper ears pink with much coaxing. Then we put her ears together and took a picture for Daddy. Off she went, Easter bucket in hand, to school. This is a good day for her. Her buddy Lauren is there - they share part time status at preschool and rarely get to see each other.

Peace and serenity - Ahhhhh! Steffie last day of school before break is today so I expect Mount Vesuvius to erupt sometime this week. Got Chrissy here but she's chilling watching a movie. She's part of Vesuvius but she'll erupt when we get Steffie from school today. 3 rads to go!!

Stef needs to go for a fluoroscopy to shoot dye up into her bladder to check for reflux. The problem is that this procedure isn't normally done under sedation. After hopping through every hoop this morning, I finally got everyone's agreement (pediatrician, rad dept, and insurance) to get on board with my strong feeling that she needs to be sedated for this procedure. No child, especially one at her age, should go through the pain of being catheterized or the embarrassment of being awake during the procedure.

The tricky part will be scheduling this between her birthday (Tues) and practice (Thurs) and her birthday party and first softball game (Sat). I'm guessing she'll just need to flush her system really well and will be feeling perky the next day. She's on another antibiotic because the infection is back. Tracking down the cause involves one test after another.

A dear family friend has resolved my Daffodil issue. Vickie read my blog and tells me she has tons of daffodils in her gardens that I can come cut at will :) I'll be visiting her soon to pillage the daffodil supply. Hugs to you, Vickie, if you see this. And prayers for your Mom.

We've covered the bunnies. Let's move to snakes and birds.

Mom and Dad have, without a doubt, a sign over the front door that says "Enter all ye animals that have no other place to go." This includes wildlife. They've has opossum, birds, snakes, chipmunks, turtles, bunnies and squirrels in the house at various times of the years. This makes for much excitement, especially when the critter is alive. They've also got 3 dogs, 6 cats, 2 parakeets, and two fish ponds. It's a zoo.

So just this week, we've had one cat bringing in a live snake. And two live birds in the house. Of course, my uncle gets the snake in his rooms in the basement of the house because the cats come in and out his bedroom window. Dad's downtown, Mom is at the Sharon Spa (with me) and frantic phone calls from my uncle result in Dad calling Ethan, the kid who does odd jobs around the house. Ethan comes to rescue the snake and put him far away in the woods. This snake, I'm sure, is traumatized more from the hysteria than the cat.

The birds are a little easier because one just opens a window and prays the bird uses its bird brain to figure it all out. Dad and I were trying to figure out just how the birds got into the house. Assuming the cats, it appears that the birds were in there for awhile because Pop said there was birdy droppings under his desk.

Just like wild kingdom!

Update: Steffie won't be having the fluoroscopy. The rad dept Doc says she cannot put her asleep for it so it won't be happening. Not my kid, not on my watch. They'll have to address the whole thing another way. I'm pretty annoyed...no make that mad.

I am SO tired

2009-04-07T00:59:00.002-04:00

It's funny as I sit here after sleeping the entire evening away when I consider that Dr. A told me radiation doesn't make a person tired. When, call me Rumpelstiltskin then cause I am the original sleeping fool! I slept from 6:30 to 8:30 tonight, then woke to have dinner and pills. Then went back to sleep until midnight when Bill woke me. Here I am typing and folding clothes, and ready to go back to sleep again.

Amazing. I know some of it is the pain patches and Tylenol. Maybe some of it is the ever present "sleep the worry away" mentality that seems to be a normal part of being a cancer patient. Maybe I'm prepping for my busy day tomorrow. Jackie to school, trip to Target for EB stuff, Stef from school, Stef to Doc visit (another bladder infection), pet scrips, get Jackie, home, da da da and a whole lot of stuff in between, I'm sure. Anyway, I'm a sleepy head.

I'm folding clothes since I was supposed to be doing that earlier. I'd empty the dishwasher too but Bill is asleep and I don't want to wake him banging dishes around. Having a Clementine and glass of water before I take more Tylenol. I never EVER thought I'd see the day that Tylenol would nauseate me on an empty stomach or even work at all, for that matter. This stuff works like a charm now.

Down to one patch since the other fell off in the shower. I think I'll try for one for now. Fentanyl really dries out my mouth. It's not really recovered from chemo yet - weak taste buds and mouth dryness are no way to go happily through life.

My skin is healing really well. Bill's burn treatment made all the difference this weekend.

4 to go and I'm DONE!!! Watch the stinking machine break this week. Murphy's Law. I will not be at all surprised.

Going to sleep, again. Be well friends!

Would it be...

2009-04-06T12:46:00.001-04:00

...really evil if I snuck into my neighbor's yard and cut all of her daffodils?

I'm sorely tempted.

;)

Snarky

2009-04-06T07:08:00.004-04:00

I'm in a snit today so I'm taking a cue from from my dear blogger friend, Sue and hunted across the Internet to find a list reflecting "stupid things people say to cancer patients." This actually made me laugh hysterically when I saw just how many things on the list had been said to me, especially the Lance part. Sheri rattles these off in her blog on a regular basis.

What we have here, world, is a lack of communication!!

So here goes, borrowed from a blog called Pink Prozac. Please forgive the profanity but I wanted to post it in it's entirety since it's someone's work, not my own. Italicized words are the author's comments - not my own.

****************************

"the past is in the past and the future is unknown. you can only live in the present and that's why its a gift"

"you could step off the curb tomorrow and get hit by a bus" (not a good analogy, its like i'm standing blindfolded in the middle of the fucking freeway with 100 of them coming at me) or (its like i already got hit by the bus and now its backing up over me)

"you gotta think positively" (ok, i'm positive i had cancer, and i'm positive that it wasn't fun)

"my (fill in blank here) had (fill in type here) cancer and that was (fill in number) years ago. you'll be fine"

"your lucky you didn't lose weight on chemo. (fuck you!)

"so, your fine now right?"

"don't worry"

"so things are back to normal now right?"

"my grandmom died of that" (oh really, well fuck you!) or (gee, is it hereditary?)

"they burned my so and so's heart and lungs when he had radiation"

"nice fro"

"God gives you what you can handle"

"what's your prognosis?"

"can i see what's going on under that hat"

"if anyone can beat it, its you" (no shit!)

"at least you got a good kind of cancer"

"if its not your time, its not your time" (then why bother with surgery and treatment? duh!)

"life is not fair" (thanks for the heads up, asshole)

"every cloud has a silver lining"

"its just a bump in the road" (living with a cancer diagnoses, losing your hair, getting poison injected in your veins, having breast surgery, getting radiation, having old lady bones, being cautious for lymphodema, gaining weight, not sleeping well, having hot flashes, being depressed and anxious..is not just a bump - its a major fucking mountain)

"remember lance"

"you gotta be like lance"

"lance beat cancer"

"just look at lance"

"wow, that went by fast, didn't it"? (um, yeah, two surgeries, chemo, radiation; 6 months have never flown by sooo quickly for me)

"i had a friend with cancer but i think her chemo was more intense than yours" (maybe i just didn't whine as much)

"just think, your done"! (done? I'm done?..i guess i'm done with cancer everyone. nothing left to do. How about hormonal therapy, all the side effects, more boob surgery and worrying for the rest of my life about recurrence..fucking done my ass!)

"you look good bald" (WTF?)

"so was it (the cancer) bad?" (oh no, i had the good kind)

"did they catch it early?"

"wow, your head is really big"

"well, is it working"..(how am i supposed to know, its going to be a fucking wait and see for the rest of my life, thank you very much)

"this is a treatable disease"

"you will be able to recover from this"

"you have a nice shaped head" (thanks)

"how do you know if its working" ( i die, if it didn't work)

"you know you can eat more curry, its supposed to kill cancer cells" (great tip)

"you'll be fine, you have a great attitude" (if attitude really matters then why did i get cancer in the first place? or does attitude only matter after you get cancer? right now my attitude about cancer is lousy. what does that mean?)

"if you really want to live, you will. just never give up. when people give up, they die" (if i were hit and killed by that bus would they think i died because i gave up?)

"i'll be thinking about you getting chemo while i'm laying on the beach", "have fun while i'm gone" ( i don't know what she was smoking, but i want some of that)

"well, just remember, its only temporary" or "don't worry, it will grow back" (doesn't help asshole)

*********************

If I ever thought the world wasn't going to hell in a handbasket, I just needed to read this list. God's truth, I look at the kids of today and watch them losing basic communication skills due to their inability to communicate in anything other than IM and text message abbreviations. Can you imagine what a list of this sort will look like 20 years from now?

Horrifying thought.

Weekend Fun

2009-04-05T12:15:00.003-04:00

Visited Mom in the afternoon to see relatives and let the girls play. My niece is just 5 years old so Jackie loves to hang with her cousin. Like two peas in a pod.

Dad and my brother chopping up a good-sized tree limb that came down in the high wind Friday night. Gusts were about 30 mph, bringing down alot of branches. We've got some picking up to do in the yard - we'll see how I feel later.

Bill just informed me of the 162 National's baseball games that will begin tomorrow. I can see that honey do list getting longer by the minute (*wink *wink)

Have batting practice today. The girls are hitting SO well. We ran them through base running exercises yesterday. I'm thinking these "midgets" will do rather well although the guys aren't convinced completely. We need some serious game simulations and these little ladies need to stop running like chicks. Steffie pulled a quad muscle - she's the leanest and fastest. Poured it on too thick without warming up enough. Hopefully, this complaint will iron itself out in the next few days.

I have pansies to plant - gotta do that too today. I love flowers - lots of them! Jackie's seedlings are starting to sprout in Poppa's garden house. We watered and sprayed them yesterday. The petunias and Sweet Williams are doing very well.

My burns are still pulling but I have to say, the great care Aunt Chelle Chelle and Bill gave me at Mom's yesterday made quite a difference. Bill spend alot of time applying cold compresses to the sites to loosen the dried skin. I love my nurse at the rad place but the saline solution she uses to clean the burns makes me want to scream. Bill is the best nurse, besides being so handsome and all :) Chelle just kept my mind occupied with talk and holding my hand. She's cute too :) Good peeps around me.

Oh yea - gotta do the EB (Easter Bunny) stuff this week. I am, without a doubt and quite shamelessly able to say, that I put together the BEST Easter baskets known to mankind. I should do it for a living, I'm that good. My husband comes in a close second as the best egg hider, driving Steffie nuts because she never finds them all until months later. This is particularly funny when one considers we hide her eggs in the same room every year.

Jackie is mad at the Easter Bunny because she has to wait a whole week to hunt for her eggs. Jackie has alot of opinions for someone so small.

Steffie is out of school starting this Thursday for Spring Break. She'll return the week of the 20th. I also have Chrissy helping this week as I'll be keeping her occupied while her Mom is at work. Jackie loves Chrissy (who will be 13 very soon). Bill's nickname for Chrissy is Air Force One and Stef is Air Force Two. The more sensible friend, Erica, is nicknamed Ground Control because she provides a measure of common sense to the chaos. They, of course, think this is hilariously funny.

I am so praying I'll be more comfortable soon so I can enjoy springtime with my little ladies. The cherry trees are blooming and we're so lucky to have two trees in our front yard. Absolutely gorgeous with all the blooms.

Mom's got a PET scan tomorrow with results coming in as fast as possible. She'll go two chemo sessions past her very best PET and then get a break. The "nurse cat" is still annoying her and in fact, tried to help with my burn treatment session yesterday. She didn't sit on me, just walked across me :) Helpful kitties, right? Mom was exhausted yesterday. Visits and worry. So Mom, if you're reading this - GO TAKE A NAP!!!!!

Hugs to all of you!

Still Ow!

2009-04-04T12:32:00.002-04:00

Pain level is hanging is pretty status quo. I was hoping by now for a little relief. When my Tylenol wears off, I definitely feel it. So I'm ramping up on pain meds.

I did help with practice this morning and it felt good to use my arm. Not too much though - just underhand throws and gentle grounders. What hurts right now is the incredible pulling from the dried skin. I'm gonna have Bill and Dad do some basic burn treatment on it today and see if we can't loosen things up a little.

The healing patches look great with healthy pink skin showing through. That's a relief. Dumb, but true - I am worried it won't ever heal and I'll always look like I got in a fight with a bottle of muriatic acid.

Gotta run cause we've got family hooking up over at Mom's house. Mom is tired but OK. The cat is being an overly attentive caregiver and won't let her sleep too much. Isn't it funny how our animals gravitate to us when we aren't feeling well? Marble thinks she's Mom's nurse. The only problem is she likes to sit on her patients :)

Have a good weekend!

Fair Warning - Hot Magenta Alert

2009-04-02T22:57:00.013-04:00

I'm going to post the promised picture of my burns but first, I'm gonna give you a Clyde and O'Malley pic to fill up the screen so you won't see the burn picture if you don't want to. It is entirely your choice whether you want to see this so I'm giving you fair warning and the choice not to scroll down to the bottom of this blog post.

The picture doesn't do it justice - think hot magenta.

He was barely tolerating me trying to take his pic when he wanted to be fed. He looks annoyed, doesn't he?

And Clyde, high maintenance cat of the year who also deserves an award for most patient cat of the year. I think he actually likes to be in Jackie's baby stroller. When we unclip him, he doesn't move out :)

Alright. Don't scroll down lower if you don't want to see the burns.

By the way, I am now allowed to combine my patches with oxycodone to control the pain. Dr. A seems to think this intense pain will lessen and that I'm seeing the worst of it right now. Everyone expects it to ease by the end of the weekend. Me? I'm being a pessimist about the whole thing.

Murphy's Law, right? Sorry for the small type but my blog width is limited. Use the zoom on your browser if you want to see the text.

Grossed out yet?

Sad

2009-04-02T10:42:00.007-04:00

Dealing with explaining the myriad details of this latest round of "Mommy pain" to Jackie hasn't been easy. She left home for preschool in tears today. Daddy had to help her get ready today because I hurt too much. Very unusual. Jackie was sitting on my lap for her morning snuggle, inspecting my collarbone redness. She said she told her friends at school that Mommy had red owwies and an emergency. (Olivia, her buddy at school, inspected me too the other day.)

I explained that this was a different kind of medicine and it was almost done. And also that it limited how much Mommy could move around. When she was walking out the door, I could see she didn't want to leave for school. I reassured her I would be fine. Bill also noticed her tears and promised her he would be with me all day to take care of me. That calmed her down. Being 4 is tough. Being 4 with a sick Mommy is even tougher. She has handled all this (with abbreviated explanations) like a heavy weight prize fighter. As has Steffie.

Stef is off in her own little world, continuing to bang against walls instead of doing what she's obligated to do. She's got a great gift - the gift of ignoring everything. If I am down and out for a nap, it's free time, according to her. This child of mine is a free spirit...she always has been. Gentle and sweet but she takes full advantage of Mommy.

I've been keeping up with the Mommy duties around the house pretty much. I can't vacuum and boy, does the house need it. My family consists of human crumb factories that sprinkle bits and pieces of everything all over the house. Add 3 cats and I vacuum 3-4 times a week. It's therapeutic.

My Uncle Frank and Aunt Regina are coming into town to stay with Mom and Dad until Monday morning. Mom is recovering nicely from chemo, so much so that she requested a road trip to the grocery with Dad today. Dad, of course, cannot stand Mom going to the grocery (read: she buys stuff!) but Mom always finds the coolest stuff when she visits the grocery. She's the only person I know who can actually visit the grocery and come home with NOTHING perishable :) Love my aunt and uncle - they are low maintenance, just chilled out people who will step in to help both Mom and me if we need it.

It's raining and mushy outside so I'm thinking the little fashion diva's softball practice might be canceled. We have added pink softball cleats to her softball fashion options. I think I'm going to make her wear my t-shirt that looks like this:

Still awake

2009-04-02T00:40:00.002-04:00

The pain since treatment has been unimaginable. Remember that they aren't frying the node sites anymore but instead straight on the tumor site. I'm pretty tough now after all that has happened to me. But I dissolved tonight because I just can't stand the pain anymore.

It's the skin, it's the implant and everything in between. The pain patches aren't working and the only thing that gives me a few moments of relief is the Tylenol. I'm pulling my patches tomorrow and going back on Oxycodone until it's under control. And anyone who doesn't agree with me--just let me hold a blow torch to your skin for 25 days and see how you get in lock step with me right quick.

It's too much to ask one person, or any person for that matter, to suffer like this to the point of almost vomiting from the pain. I know it will be better within the next 2 weeks but I can't do it right now. I hurt from my rib cage up to my neck, from my sternum all the way around to my right shoulder blade - yes, that's shoulder blade. And everything in between, including the crispy part under my arm, at my collarbone, below my right boob and down the left side. Raw exposed skin.

Maybe I'll post a picture tomorrow.

ARGH!! THIS HURTS!!!!!!!!!!!!

2009-04-01T14:58:00.001-04:00

Got cleaned up today. I guess it's equivalent is burn treatment. Feels cool and good when they dab the skin!!! Until I get home!!!

Argh!!! Tylenol here I come...

Mom Babysit x 2

2009-04-01T11:45:00.002-04:00

Mom is here for the second day after her chemo session Monday. She's doing great. I expect no less from a Mom who's listening well ;)

She receives two drugs called Olympta and Sysplatin by mediport every 3 weeks. As some of you might remember, she received a fabulous PET scan a few weeks ago with all mets gone except for one area in the right lung (down to 1 cm with SUV (cell activity) in low single digits). So she's cooking on chemo again to blast the mets to smithereens. She likens chemo to a pac-man chomping on the bad cells. Crazy Mom.

The plan is to do another PET on her next Monday, then take the results and pound her 2 more times past the best PET result. Then she'll have a lowered dose of another kind of chemo that can be delivered in 30 minutes. That's a definite step up from the 6-7 hours she spends at chemo now due to required meds such as Lasix needing to be administered individually.

Mom's doing fabulous here. Her appetitie is up and she's actually requesting yummy foods - mac and cheese shells, strawberries, mayo and egg sandwich (yuck!) and welch fruit treats. Of course, don't forget the ever present Clementine oranges. I finally convinced her that using Miralax twice a day is much better than Sennecot with it's associated cramps. She drinks her water when I hand her the cup too! We've got a great program running here. She stays over at my house for a peaceful day right after chemo. This week, she's with me for a second day because Dad is downtown for the morning. Mom's house, with 3 dogs, my dad, 2 birds, 6 cats, and my uncle is not conducive to rest. AT ALL!

So since I know she's going to read this :) I need to give her some props. Mom is being an excellent patient and Jackie is loving her being here. Jack has behaved this morning, being quiet while Mom napped so she's being a helper girl.

The chicks rule right now :)

The Scoop

2009-03-31T10:47:00.004-04:00

Here's the deal with fried underarm. The wonderful nurse cleaned the peeling skin away very gently with saline. Gooped alot of cream on and today, I can move my arm freely without feeling like the skin will tear. It's still hurts like the dickens but my patches help with that.

This whole mess is being aggravated by the filling of my right implant. As the skin is shrinking, the implant is getting pushed around. I can actually feel the edges of the thing. This hurts like it did when I first has my mastectomy. Except that my left boob isn't suffering along with the right.

I had 2 babies - I can do this, right?

We discussed after treatment depression yesterday. Dr. A mentioned that many women crash emotionally after being under the constant care of physicians for so many months. He spoke specifically to Bill about this issue. I don't plan to have depression. I remember the feeling of incredible elation after finishing chemo. A feeling of freedom to do what I wanted as soon as I was strong enough. To be lazy if I wanted to. To NOT have my life guided by doctor appointments. It may sound arrogant to say I won't be depressed. I might get scared but I realize I need to learn how to deal with being a cancer success story. I did ask Dr. A not to be offended if I come running out of his office, hooting and hollering with a big grin on my face. (I could tell he thinks I'm gonna be a basket case!)

I'll be visiting him weekly for the month after treatment finishes for TLC for my skin. After that, visits will pop out to monthly if he feels the need.

I complete 25 of 25 lymph node radiation treatments today. YAY ME!!!!!

I have 5 more treatments after that focusing on the tumor site. Straight on the front. Then I'm done, done, done!!!!! April 8th, I think.

So I'm thinking about depression, about my sisters and brothers who are struggling with this awful curse, and pondering where all of us are sitting within our battles. Moving forward always. There is a light at the end of the tunnel.

Ta Ta for now..

Snap, Crackle, Pop

2009-03-28T22:57:00.004-04:00

The skin has peeled under my arm. Came home from Mom's and pulled my shirt off. What a wonderful present. I promptly freaked and called the on-call Doc to see what to do.

The silvadene is safe to use as it's antimicrobial (like a step up from neosporin). This really hurts, like heavy duty peeling sunburn. My best guess is that I have 2 more sessions under my arm if I understand correctly. I wonder if it'll hurt even more with treatment when the skin is broken?

Dr. A was on vacation last week so I'll feel better when I see him Monday. His nurse is wonderful and she's been a peach all week, checking on me and making sure I'm okay with pain and skin. I should've been more aware about the skin under my arm since she wanted to check me after treatment yesterday. Ignorance is bliss, right? I had no idea it was going to peel.

Mom supplied a new salt shaker (thanks Mom!) and like you said Sue, I know it's gonna show up soon since there's a replacement. Murphy's law.

Got my laptop back. All I can say is yippppeeeee!

We planted lots of seeds at Poppa's. Petunias, vinca, impatiens, and a multitiude of marigolds. We also added some Sweet Williams for my own Billy :) Jackie had a cow when she realized we were leaving the little pots there in the greenhouse.

BTW, fair warning everyone. I don't like this blog setup because it doesn't give me an edit button with the new template right under each post. So I might be changing the internet wallpaper again :)

Night everyone.

APB: Missing salt shaker

2009-03-28T11:49:00.005-04:00

Its raining and bumming me out. Not only because Steffie couldn't practice either Thursday or today but because I want to see some sunshine. We're in a water deficit here though, so I know we need the rain. I'm taking Jackie to get some seeds today. We'll be setting up our annuals for planting in a month or so. Dad doesn't know it yet, but we'll be using his greenhouse :) He'll be able to monitor the seedlings.

(He knows now though, doesn't he?)

This is the first year we've done this so we'll have to see how it goes. Last year, Jackie planted some zinnia seeds in a pot and they took off! We moved them to the gardens and had a riot of purple flowers the entire summer.

My cousin's birthday is today so we'll be heading to M&Ds for steak and cake. Easy day, I hope. Stef's going shopping with a friend so I should have some silence.

We've lost the salt shaker. Either I put it somewhere or threw it away, or Jackie confiscated it. I don't know how Jackie could have done it since she wasn't here. So I'm likely the culprit. Pretty funny that I can't remember what I do from minute to minute. Milk in the pantry, coffee in the fridge, butter someplace else. It's wacky.

Air heads, unite! Or is that untie?

I'll come up with a witty title later

2009-03-26T18:51:00.003-04:00

Hi everyone.

My patches are "patching" meaning that they are working right now. It doesn't get rid of the underarm pain, just makes me not care. It works for me.

I had blood drawn earlier this week and lo and behold, my counts were slightly low. I find this bizarre because they are considerably lower than right after chemo. However, the counts are just below the normal range so it's not a cause for concern. Can you tell I don't care too much?

In answer to Sue's post: about half way through radiation it's typical to get blood work done. What I didn't know until the vampire came at me with 2 tubes (are you reading this, Walter?) is that it's a thorough blood workup in conjunction with the regular smaller vial for counts. My guess is they're checking me for mets, but I'm not thinking about that. They're checking something or else I might get annoyed that they took so much :)

The hip and back pain is chemo "algia" something or other. I can't remember which algia it is. It's now pretty much under control, courtesy of my trusty patches. Fentanyl to the rescue. I do hope this is just a right now kind of thing. I can't be this gimpy all the time. I just don't even want to think about that.

I did find out today that they are almost done frying me to a crisp in 5 areas. 3 more treatments will be directed at the underarm, nodes and lower breast areas. The next 8 treatments after that will blast the boob directly at the tumor site. I'm at 22/25 right now for this first round of treatment. You know, I love Dr. A - he's great. And I love how he's holding true to form with all my other Docs with only telling me what I can handle at a time. It was so funny today. I think the nurse thought I was going to go postal when I heard about the additional 8 directed at the tumor site. Fentanyl doesn't make one go postal; it makes one go to sleep.

I gotta admit, I'm damn proud of myself for not needing something to calm my nerves through this whole thing. I'll give credit to Billy for that, and my girls for keeping me focused on what's important - my family.

Pancakes for dinner. Yum!

Hot Magenta

2009-03-25T20:48:00.004-04:00

Take boiled lobster and you've got a good idea of how angry red my chest is. Crispy red. What's red?

Like an apple.
Like a tomato.
Like a heart.
Like a National baseball cap.
Like a red sharpie marker.
Like a fire engine.

Red. I've decided the color will be named Hot Magenta. Hot Magenta was Stef's favorite color when she was three. She called it "Homagenttttta" and then would crack up laughing. I'm not laughing though.

Doubling up on the pain patch with the Docs blessing. Which means I won't be able to drive so I'm back to square one where I was in September. 9 more treatments to go plus Pain Patch x 2. I'm living the high life here, literally.

Drama Part 2

2009-03-23T23:23:00.002-04:00

After a long day, I've decided I don't have the energy for drama right now. My skin's burning and itching and I'm watching Armageddon. It's fitting. If I wasn't watching this, I'd be watching Will Smith in Independence Day, frying aliens and blasting spaceships out of the sky with fighter jets and rockets.

The opinion of the radiation folks is that my bone pain isn't from the radiation (haha, that a surprise, isn't it?) They think it's the chemo and possibly the Neulasta throw in for good measure. So I see the oncologist for a blood draw with the vampires tomorrow and we'll discuss it then. For some reason, I do believe I'm gonna hear "deal with it." And of course, the proverbial 6-12 months and it'll be better. What they don't realize is that I heard the same thing when my tailbone cracked when Steffie was born. It took alot longer than 6-12 months. I'll be loving that pat on the head tomorrow. There, there bunny.

So here I sit, itching like the dickens, sore across my collarbone, the entire width of the right side of my chest, up under my armpit to the skin on the back of my arm. I do realize I had alot of issues to deal with in this area. So I'm just complaining to be dramatic. I would do this anyway if the pain and discomfort was worse. But, and this is a big BUT, I'm entitled to having my complaint department being open and broadcasting at will.

One other bit of drama before I finish this for the night. You see, the nuke has been armed in the movie and I need to watch it. Anyone tells you or anyone else that radiation doesn't completely exhaust you, they are full of it. The fatigue is unimaginable. For example, this morning I woke up with Bill at 8 a.m. and heard him rummaging around getting his shower, making lunch and coffee. Jackie woke up, went downstairs to say goodbye. I conked out again and didn't wake up until 10:30. Thank God she just got onto the computer to play on Nick Jr. Scared me to death. And bless her heart, I praised her so much for being such a big responsible girl. I never sleep in, I'm never the last person in bed. Only thing different is the radiation. So there it is.

Gimpy

2009-03-23T01:36:00.003-04:00

You can bet the complaint department will be good and open tomorrow (or today) when I visit Dr. A. I'm having joint pain in my hips and upper thighs and right ankle. My lower back was so sore this morning it felt broken when I tried to get out of bed. I'm gimpy when I stand up and it takes some serious moving around before I limber up. For God's sake, I'm only 41. This gimpy stuff is for the birds.

Bill's worried enough to go to the Doc with me tomorrow. I googled this (big no no, I know) and it seems that joint pain can be a side effect of chemo and radiation. oh Joy! Just what I need.

All this crap is like baggage I don't want. I'm ready to move on here and somethings always holding me back.

On a brighter note, sometime this month is Maui the cat's birthday. So here she is, in all her 18-year old glory. She loves to be perched on the back of my chair. She likes to be treated like a princess too, as you can see by the food dish being placed conveniently near her sleeping spot.

My laptop has been in the shop for half my adult life (not really but I've got my drama on) and I should be getting it back this week. The monitor blew and it's frankly cheaper to replace the monitor than the whole laptop. My book is on there and I've been beyond inspired a number of times and unable to write because I'm missing the documents that contain my grand plan. The broken stuff in this house (not including me) is getting out of control. Bill is broke too - he needs to get into the Doc to start scheduling his hernia surgery for sometime in April.

I'm not done with the drama. The day has just begun but I'm going to bed. I'll ramp up after I sleep.

:)

So sore

2009-03-19T22:59:00.004-04:00

Things aren't going well on the right arm front. Even though I had a 2 day break from radiation, I'm beyond uncomfortable. This pain on my right side is rivaling the pain right after surgery. I was worried about my little "pocket" filling with fluid again so I mentioned it to my nurse today at radiation. Dr. A checked me out and declared this whole thing a mess.

Because my implant was filled 3 weeks before radiation, my tendons and muscles haven't gotten used to the pressure. As the skin tightens from the radiation skin changes, it puts pressure agaunst the implant. So basically, the implant is being shoved around a little. It really hurts. We went on a walk last night and I couldn't even handle the regular swinging motion of my arm. Dr. A said he could see the pain on my face. I'm exhausted. Not sleeping. And when I do, for some unknown reason, I always end up on my sore side.

I'm now on a Fentanyl pain patch 24/7. God I hope this works. The idea is to low-dose me with this to try to keep me from being too loopy. And to make me more comfortable. I'm sure I don't need to tell some of my sisters and brothers in cancer about pain taking a toll. It's doing that to me.

The topical pain is still pretty bad too. I now have a cream I'm allowed to apply it twice a day. This is a step up from the Aquaphor I was using to control the itching. I did remember to ask Dr. A if I was being a drama. He said my complaints are legitimate (isn't he nice?)

They gave me flowers today - Daffodils. Such nice people.

Maryland won today. You go TERPS! I am so excited about this team. What a bunch of kids. And Gary is just a great coach. We're up against Memphis on Saturday. So much character, so much a team.

The only saving grace to this whole nightmare is that I get to watch basketball while I sit here like a princess.

*blows you all a kiss*

Radiation cancelled

2009-03-18T09:37:00.003-04:00

Had a slight break yesterday because the radiation machine broke. I needed a break. My rash is very pronounced and I'm very sore. Not anything new, huh?

Quiet week with my parents out of town. Had Jackie's conference yesterday. Good marks for everything across the board, except that she colors horribly. Jackie is the kind of kid who likes to do things perfect the first time. Since she doesn't like to color outside the lines, she doesn't color at all. I've told her it's how we teach our hands to be smart and do special things. She ignores that and instead tells me her hands are already smart :)

So if you hear screaming, it's coming from my house as we sit coloring when she doesn't want to. She does like to paint so maybe we could do some of that. Fine motor skills need developing, whether she likes it or not. She does write her name beautifully but we all think she'll take off if we teach her hands a little more. And of course, when she colors in the line.

My nails are a complete mess. I may have gotten through chemo without losing them and having them turn black, but boy, are they falling apart now. All of them are clipped short and are peeling, especially my thumbs. The breaks on the sides are slowly moving their way up and then the nail gets snagged on something and rips off. First aid cream to the rescue! Makes me wonder if they'll be deformed when this is over.

I was immersed in sub-Saharan culture last night helping Stef study for her social studies tests this week. She needs to ace these to pull her grade up before end of quarter at the end of the week. I think she's pulled everything up to a B except English. We'll see. I've warned her of the smackdown coming if the grades are really bad. I'm not sure what I'm going to smack her down with since she doesn't have her phone or the computer right now. A sassy mouth took those away. She's a sucker for punishment. But then, she has had alot on her plate these past few months. However, she does need to learn the lesson that you rise to adversity, not let it be an excuse. I think she's learning this.

Softball tomorrow. Stef was obsolutely horrifed when we talked about what she'd be wearing. Sweat, a t-shirt, and grubby sneakers. She told me she hadn't worn a t-shirt in ages. God help me - we'll have the first softball fashion show in history. Couple that with the pink fast pitch softball glove and we're sure to have some drama.

I did get on the fevil exercise bike for some fun and interval training. The great part was that Jackie kept resetting the bike timer and messing me up. I think I might have done 4 miles. 5 minute warm up, 1 minute on and off, fast and slower riding. But who knows, since Jackie kept pressing the button. She'd dash over, smack the button with her little finger, and run away. She's a pip!

Have a good day everyone!

Keeping myself occupied

2009-03-16T12:35:00.003-04:00

Busy here writing articles about the NCAA tournament. It keeps the mind occupied and hopefully, the pocketbook a little more full. These articles go on "pay by click" which seems kinda fruitless but it actually isn't. Pay per click articles are "evergreen" meaning that they are good forever. A good way to develop a passive income stream.

Jackie has moved through this latest cold quickly and my hands are still surviving the onslaught of constant washing. Dry and brittle nails and chapped hands are no way to go through life (haha, right?) She's stuffy but not overly so. And well enough to be annoying with climbing all over me. Try collecting your thoughts with chemo brain and a kid using you for a tree. Multitasking isn't my strong point right now.

Steffie starts softball this week. This should be fun. She's never played a team sport before. Instead, she's danced for years but we had to skip that this year with my heavy treatment plan. Practice begins Thursday. Yay, right? I fully expect a meltdown as well as theatrics. I need to find the entire first aid kit before Thursday. She's playing with school friends for a rec league. Bill has coached men's softball for close to 25 years so he's knows the ins and outs very well. I will confess to being a little amused last night when he looked up at me and said something about needing to force himself to think of the fundamentals again. I'm thinking I might take my tailgating chair and a thermos of coffee to sit back and enjoy the fun (*insert evil laugh)

I've told myself I'm getting on the "fevil" exercise bike today. Fevil is Armand's word and I'm stealing it. I think he'll appreciate the extended use of the term. Who knows - he might end up being famous for getting it in some dictionary somewhere. 1:30 is my time. I'm doing it. For real. More than just the mile I've been doing 3-4 times a week. Seeing a pic of myself when Steffie was 7 did the trick. I'll beat the steroids and last 9 months of inactivity out of me if it's the last thing I do (how's that for drama?)

I start the second half of my radiation course today. Whoppee! I'm happy treatment is moving along but not thrilled at the condition of my skin. It's itchy and I'm not supposed to itch. Thanks, Captain Obvious but it itches! What's a girl to do? I have 3 2-inch long scars from my allergic reaction to the henna marks on my skin. Love that. It's actually symmetrical. One each on the left and right and one in the middle. Looks ridiculous. Let's mention the cross sign I have on my chest--you know, right in the area where a necklace pendant hangs? Good damn thing I gave up bikinis 5 years ago. Forget scooped necks shirts too.

Catching the sarcasm? Good. I'm annoyed again despite the appearance of tiny hairs along my eyebrows. I'll report on the condition of my eyelashes too - they aren't. No mascara since I'm trying to help them recover before Easter. This whole thing has officially turned me into a bitch. I see people with pretty hair and want to yank on it, really, really hard. The horrifying part is that I don't think it would make me happy if I manned the razor to shave these people bald.

Half Way Mark & Mom

2009-03-14T11:27:00.007-04:00

I've reached the halfway point through radiation. While this isn't a cake walk, it's better than chemo. Actually, it is a cake walk versus chemo. I can handle the skin discomfort. My problem is that I don't want to.

I'm hydrating my chest with a cold washcloth under an ice pack. It makes me quite cold but working from the outside in is one of the ways to keep the skin from being damaged. It's amazing that I've progressed from the point of being worried about the cancer moving to being worried about my skin. How the priorities change. It lurks though, in the back of my mind.

I finally got a tiny bottle of cream for the itching skin. Only can apply once or twice a day, particularly at night to stop the itching. The concern is creating any open sores or tears on my skin.

I think this blogging thing is rather strange. It's amazing to me that the counter just ticks away with people reading this blog and I have no idea who they are. I also find it interesting that there is a core group of us who comment on each other's blogs pretty regularly. And then they are some that I read that never comment anywhere. Got to wonder if these folks are just so mired in their own pain and suffering or if they're really that self-centered in real life.

On to Mom.

She kicked butt with chemo this time and I'm taking full credit for it. She had chemo monday and I brought her lunch. On Tuesday, Dad brought her over here so I could write and babysit. Jackie and Stef were at school. She had a very peaceful, quiet day. My cats don't make nearly as much noise as her three dogs. She ate well, rested 3 times and I think this started off this recovery very well. I know I went to keep her company on Thursday at her house and I tried for 4 hours to rest. It's not easy over there at all. So, executive decision Mom - you're coming over here next time for peace and serenity :)

Kathy, you're on my mind, doll. I think you'e got the very best attitude possible about your recent mastectomy. Keep at it, use your drugs to control your pain, and look forward. You're done jumping through hoops.

Mom, you're attitude has changed with your last PET and I'm thrilled for you. You're alive, you seem happy even though I'd like to curse the fact that you're the only person who happens to look great while taking steroids :) One day at a time gets us through this.

Sheri, chemo is a nightmare but a necessary one. It's intestional, so think of it that way. Eat, please eat and drink 80 ounces of water a day. You'll have one crappy week (literally) and two good ones. You're strong in your head, and your body will get stronger. Just look at your kids and husband to give you strength. Clementine oranges work wonders, really. Just ask my mom - I turned her on to them like a drug :) BTW, your blog totally cracks my mom up. We shared a read just the other day. She thinks you're a hoot!

Props to Armand, Sue, Renee and Deb for handling your situations with humor and wit. Virtual hugs to all of you too. As silly as it sounds, I'm damn proud to "know" you all and thrilled that every single one of us is being proactive with our care.

Outta here.

Fear the Turtle for Real!!

2009-03-13T21:19:00.002-04:00

Second round game won. Moving on up the conference tourney bracket.

Go Terps! We'll play the winner of the Duke/Boston College game tomorrow.

This game tonight exhausted me :)

Groundhog Day redux

2009-03-13T08:41:00.002-04:00

Jackie is sick again. She had a fever last night and this morning.

Fun.

She's a good patient but really, when will these colds be gone for good? She says her throat hurts this time. I should just fill her sippy cups with benadryl. Bill and my Dad seem to be flaring up every other week; Jackie is doing the same. The guys (I believe) are getting these colds due to stress. The sum total of Jack Jack's stress is whether the cat is being nice to her and if we have chocolate milk.

I'm completely at a loss. At least she's old enough now to give her decongestants without worrying too much.

Groundhog day strikes again.

Skin changes starting

2009-03-10T21:29:00.002-04:00

It's inevitable, I guess. But I'm not happy about it.

Add a swollen right quasi-boob to the mix of discomforts. It's swelling and pressing outward from the tightening of my skin. I can feel the upper ridge of my expander. Great fun. I noticed redness around the lymph node area below my collarbone and the skin is changing texture on my chest. Almost like the pores are widening. Oh Joy!

I'm not supposed to use any creams. Even under my armpit which is really quite uncomfortable. Resting my arm yesterday consisted of not typing but I decided to clean the living room carpet. For exercise, of course.

I sometimes wish I could just sleep through this whole thing.

I spoke to a woman at radiation today who heard me muttering about not wanting to wear a pink gown. I like the blue gowns. Anyway, we started talking and she mentioned that a few of her friends said she was basically being a drama while on chemo and that she should have recovered by now (she finished Jan 14th).

Chemo and our reactions to it are very individual. I guess what has pissed me off the most through this whole thing is simply being labeled as a "breast cancer patient" - slap a pink ribbon on me and call me done. No one has an identical treatment course, no one's reactions are the same, everything about this is individual. And I think women short change themselves when they settle for less.

I felt bad for this lady and asked her to give these chicks my phone number if they ever say anything so dumb again. I became more reasonable and finally asked her to please tell them that she'll have more compassion when they get cancer themselves. She was a sweetheart and seemed a little overwhelmed by the whole thing. I'm going to suggest she contact the health coordinator at the Hospital and take the "Look Good, Feel Better" course. I did clue her in to the Nioxin hair serum to help keep her scalp healthy until her hair grows back.

What a day.

Radiation happened after a whole day's worth of stuff and there was still more in the afternoon. I'll give you all the breakdown, just because you're my captive audience :)

My day started at 7:45 with a door bell ringing...

Mom arrives for babysitting (chemo was yesterday)
Make coffee, Bill's lunch, visit with Mom and Bill, Jackie awake
Feed screaming young and old kitty cats
Shower, get Jackie ready and take her to school
Home, coax Mom into nap
Write for a hour
Feed screaming old kitty cat
11 a.m. frantic phone call from Steffie at school (dropped water bottle all over herself - soaking wet - needs change of clothes)
Drive to school with clothes
Return home
Write for 45 minutes
Feed me and Mom awesome Velveeta Mac and Cheese shells for lunch
Write for another hour
Drive to radiation
Get X-rays and radiaton treatment
Drive to Dunkin Donuts for celebratory coffee (we don't need a reason to get coffee)
Drive to get Steffie from school
Return home
Feed screaming old kitty and young kitties
Mom naps and I write
Drive to get Jackie from school
Return home
Feed old kitty again
Bill comes home.
Dad comes to get Mom
Eat dinner
Feed old kitty again (she only gets a tablespoon at a time to help her keep it down)

I did no laundry today. I did no dishes (mom did them). I didn't make dinner. I wrote 6 articles. And I cleaned up cat poop from Clyde sticking his butt out of the kitty box during his morning constitutional. He's a complete failure as a cat, except for when he wants to scratch something. Imagine your highest maintenance friend and you've got Clyde in a nutshell.

That was it. And I'm exhausted.

Off to bed.

Resting the arm again

2009-03-09T10:41:00.002-04:00

Not writing today but instead, resting my arm and keeping mom company during chemo. Jackie and I will be her personal assistants.

Maybe some would be appalled at me taking my girl to see my mom at chemo. I feel it's an important part of her learning and understanding how to be compassionate. We've told her that mommy and Mimi have inside boo boos that need special medication (medis is what Jackie calls it). She knows that it gets put into the port and that we feel icky for about a week. She's a gentle thing and simply snuggles close.

In fact, every time I had chemo and was just splayed out on the sofa, she'd tuck up next to me and place her hand on my head, back or shoulder. Just like a little kitty snuggling her mommy cat.

Anyway, back to Jackie going to chemo. We've tailored down our explanations to compensate for her age and of course, she hasn't seen my chest. She knows that Mommy has been very sick. I don't think she registers the seriousness of it but that's fine. Steffie seems to have put that out of her mind. For that, I'm glad. No kid should have to be consumed with worrying about whether Mommy is going to live or die. Steffie asked to see my incisions and helped me immensely right after surgery. She's a tough cookie, my kid. I pray Jackie is the same way.

Off to make lunch for Mom.

Ciao!

In the doghouse

2009-03-08T21:58:00.002-04:00

I know I'm so in the doghouse tomorrow when I go for radiation. Monday is the day that Dr. A checks out the patients and he measures the swelling of my arm. Lucky me. It's swelling so much the skin is starting to feel tight.

It's a conundrum.

One doc says don't baby it and the other says act like a princess. What am I supposed to do? It's a good thing I'm not doing radiation in the summer because Dr. A would be really upset when I mow the lawn. GOod thing he wasn't around for the leaf blower or I would've been in big trouble over that.

I could never be a real princess. I don't imagine that princesses clean cars, do groceries, or straighten up the garage. It was 70 degrees outside. Way too nice to be inside being a princess.

Jackie stole my ice bag (she likes to put it on her head). I need to ice my arm and elevate it which won't be easy because I have a ton of writing to do. I'm with Mom tomorrow for chemo so I may just do a ton of research and then write up there at the hospital. That works if all the planets align and Jackie gives me some peace.

I hate the time change. I know it's better this way but losing an hour really messes me up.

Not too tired yet from radiation. I'm 1/3 done and truckin' along. 10 session out of 30. It's going fast. Walked 2 miles yesterday with Bill and Jackie and it felt good to be out moving. My back is extremely sore but that seems to be mostly from the table I have to lay on every day of the week. It's like a perma-crick in the back.

I finally gave up on my nails cracking along the Mees lines and clipped every single one short. It was getting way too painful with them cracking way down the quick. Chemo made my nails grow so fast and they're still doing that but I can't handle how bad my fingers hurt when another one cracks. Hopefully, this will keep pain to a minimum. I just need to remember to keep them clipped. Maybe I can clip mine when I clip the cat's nails so I won't forget? I wonder how long it will takes for these ridges to grow out? Six little horizontal lines on every nail...

I'm done. Hitting the sack and I'll start fresh tomorrow.

:)

Voodoo Doll Update

2009-03-08T09:18:00.002-04:00

We didn't have to have the Saturday Voodoo doll extermination ceremony. Seems Aunt Pat decided to contact the lady who owned the doll originally. This lady said she'd meet Pat to take the doll from her.

So Pat puts the doll in a metal box, then into the trunk and drives about 30 miles to meet her. Upon getting there, the lady takes the doll out of Pat's trunk, unwraps the white cloth, and proceeds to have a talk with the doll. Things along the lines of whether the doll has been behaving, etc.

Glad I wasn't there.

Then she proceeds to place the doll on the front seat of her car (like a passenger) and off she goes. I'm surprised she didn't hook the seatbelt.

Voodoo crisis is over :) No public land set on fire, my Dad hasn't been arrested, and his God credit checkbook seems to still be in good shape.

Fruits and nuts in this world :)

Eyebrows, lashes, Katie's Birthday and VoodooDolls, in no particular order

2009-03-06T17:36:00.009-05:00

Today has been eventful. For alot of reasons. Let's begin with the brows and lashes. Ladies and gentlemen, I want to let you know that even months after you finish chemo, the demeaning effects will continue. Long after you've gotten your last dose of juice, your body will still be doing things against your will. Case in point, eyebrows and lashes. I went through all of chemo and now I'm 6 weeks out (jan. 20 last dose) and lo and behold, NOW I'm losing my brows and lashes. I have peach fuzz hair on my head, I hate warm hats, am having hot flashes, and the only thing that's kept me sane in my lashes and brows. This is really pissing me off. So now I get to look forward to looking 100 percent like shit without even mascara and eyeliner to save me. Lucky me.

Why does this happen? Because chemo kills those cells that grow the slowest last, i.e., the lash and brow cells. And while I might be acting a little wretched because these treatments are supposed to be saving my life, right now I feel like complaining. I've put up with alot and there's more to come. I keep hoping to dig myself out of this quicksand.

On to voodoo dolls.

Our dear friend Aunt Pat has one in her possession. And Pat wants rid of the thing. Apparently, you need to wrap these things in a white cloth and place the doll inside a metal container to trap it's bad aura. Needless to say, the doll has been out of it's wrapping for the last year for some unknown reason. The original owner left this thing with Pat (I think to get rid of it easily).

Pat's determined to dispose of it.

Enter me and Mom. Pat springs this on us today at breakfast. "Help me get rid of this thing." For whatever reason, some people choose to believe these things or at least, be afraid of what they don't understand to garner a healthy respect for it. So our task is to investigate how to get rid of the voodoo doll. No problem. Just google, right?

I call Bill with this story and he concludes that none of us are allowed to touch the doll. We don't need any more bad luck or the perception of it. Bill has a healthy respect for the unknown, having seen a ghost in Hawaii with his brother in law. His Dad also lives in a haunted house on the northern neck but that's a story for another time.

Back to the Voodoo doll.

VoodooMama's website has all the details of how to get rid of a voodoo doll and guess what? The site also sells a Voodoo Doll Disposal Kit for $14.95. Yay! Nope. Pat decides this needs to be done tomorrow because the bad luck is getting out of control. Scratch VoodooMama's disposal kit. Not enough time.

So how does one get rid of a Voodoo doll? All you need is a site on consecrated ground to dig a hole, the doll wrapped in a white cloth, matches, Holy Water, and sage candles. The idea is to dig the hole, put the wrapped doll into it and set it on fire. When it's completely burned, sprinkle Holy Water on the ashes and bury it completely. Then you go home, bathe completely, and take the rest of the holy water and bathe in that too. Burning the sage candles in the four corners of your home helps cleanse the home. Oh yea, it has to happen on a Saturday too.

I want to add at this point that this is not an ordinary voodoo doll but instead, one bought from a serious practitioner in Jamaica. As in chickens-hanging-from-the-ceiling real. This lady made the doll and sprinkled all kinds of herbs and what not all of it. And instructed Pat to keep this thing in a metal box. Pat was purchasing this thing for a friend. A friend who left the thing with Pat because she probably read VoodooMama's site a realized this stuff isn't easy.

Our biggest problem was (note past tense) getting enough Holy Water to do this for Pat. She was speaking to her sister (who's conveniently 3 hours away) and she says "You're surrounded by Catholics so just have them get some for you." Not as easy as it sounds. This is a job for Poppa. We all agree on this. Mom calls me and asks me to explain this to him.

So I do. And he busts my chops on everything I say. I guess I may have started with the VoodooMama site and worked my way through a very roundabout explanation. Suffice it to say, he deadpanned on everything I said and then mentioned that he was just talking to someone at work about how he's surrounded by a bunch of crazy women.

As I mentioned various aspects of this "ceremony," I told him that we planned to burn and bury the doll in the woods behind the neighbors house. Pop then says he thinks its great that I'm trying to get him arrested for setting public land on fire. He's friends with the local fire station guys so I just asked him to tell them what we were doing and invite them to help. If he could've crawled through the phone to strangle me, he might have!

I got to the part of the Holy Water and asked him if he'd get it for Pat. Poppa states that he thinks stealing Holy Water from a church to have a ceremony to dispose of a Voodoo doll might violate his credit report with God. I'm howling at this point. Then I ask him to talk to Father so he doesn't have to be dishonest. We both concluded that Father would have all of us in for counseling if we approached him with out request.

I've mentioned on this blog before that's he's a drama and my girls come by it quite honestly. He comes in the door today and promptly rolls his eyes at me. But then he doesn't take off his suit, stuffs a plastic container in his jacket, intending to go up and get some water. Remember that he's had an hour or so home from DC to plan his approach. He didn't let me in on it though so I'm worrying about his God credit account (as Steffie calls it) and him being arrested.

I head out to take my girls home and call him about 15 minutes later to ask him, simply between us two, to fill the bottle from the faucet and just say it's Holy Water. Lo and behold, he had already been to church, filled the bottle and returned home.

Now I'm worrying that Father has video cameras installed in the church :)

It's our Katie's birthday today - the big 19. Happy Happy Kate!!

Fear the Turtle - Here's Why

2009-03-05T16:00:00.002-05:00

This one is for Sue :)

I dredged my brain for the reason why University of Maryland's mascot is a turtle. I came up empty. Enter good old wikipedia!

Maryland's state reptile is the diamondback terrapin. Duh! Testudo, our mascot, came to life in 1932 after Curly Byrd (football coach at the time) requested students to come up with a new mascot. And Testudo was born.

Diamondback terrapins are endangered due to overhunting for delicacies such as turtle soup (token dumb joke from visiting schools). They range far and wide from Florida to Cape Cod. Lady turtles can grow to 9 inches and the gentlemen turtles tend to be about 5 1/2 inches. This is called being sexually dimorphic (some bird and ducks do this too--sexes within the species are different sizes, colors, etc.)

On with the minutae...

The first bronze Tesudo statue was unveiled by a real live turtle. The Story:

On May 23, 1933, Testudo was unveiled to the world. The live terrapin used as a model had a ribbon attached to it, which was in turn attached to the canvas covering the sculpture. And as the smaller terrapin struggled forward, Testudo was revealed for the first time.

Testudo has seen some rough times with kidnappings and such. He's a hearty soul and has managed to survive many trips off campus. There are now 3 Testudo bronze statues; one located in front of McKeldin Library, one at Byrd Stadium, and another gracing the front of Comcast Center, the Basketball arena.

At first, Testudo had his perch in front of Ritchie Coliseum. Unfortunately, this relatively open spot soon became the scene of multiple crimes against the unguarded mascot, including painting, defacing the pedestal, and kidnapping. In 1947, when Testudo was captured by Johns Hopkins students, many Maryland students rushed to Baltimore and laid siege the building where the mascot was held. Even though 200 police were called to control the riot, the "siege" quickly turned into a party.
Soon after, Testudo was again snatched from his perch. Two years later, Byrd, now president of the University, received a call from a University of Virginia fraternity telling him to please get Testudo off their lawn.
With Testudo safely recovered, he was hidden in a campus carpentry shed until 1951. It had become apparent that greater security measures were needed to protect him. George O. Weber, Director of Physical Plant at College Park, and Class President for the Class of 1933 was determined to protect the campus mascot. So Testudo was filled with 700 pounds of cement and attached to his new perch in front of Byrd Stadium with long steel rods and hooks. While this put a stop to the terrapin-napping, painting was still a problem, especially by Johns Hopkins students. During one episode, Maryland students caught some Hopkins students in the act and promptly shaved their heads.

We all rub Testudo's nose before game time for good luck :)