Prepping for chemo has taken us by surprise in many ways. The haircut for me was probably the easiest part. Bill and I did it with some emotion, not over the hair - that will come back in some way - but the unexpected battle. My childhood friends/accomplices surrounded us with laughter, an amazing dinner, liquid refreshment, lots of humor, and huge amounts of love and support. Bill sheared my head with the very same clippers that were used for his first haircut as a child. The clippers were a wonderful life connection. Feeling new breezes here on the seacoast...

No Joke One More Week

Bill here...

The Jeff Foxworthy joke goes something like this: “If you mow your front yard and you find a car, You may be a Redneck…” The Tracy-corollary is: “If you cut off all of your hair and you find a set of Viking horns, You may be a Chemo patient…”

Today was “Chemo Teach” day with Sarah in the Infusion unit. Everything you need to know about what may happen, why, because of what chemical, and what to expect… More documentation, more information, another binder to add to the pile, and – more prescriptions for things to keep you from getting sick from taking the things that make you sick so that you can get better. We also got a tour of the “Infusion Pod”. One of the voices in my head started screaming “DON’T FALL ASLEEP!!!!!”. Again - if I *have* to keep explaining all of these very obvious references - I will just insist on becoming more tangential. The excersice will be left up to the student...

My high point today – learning how to pronounce “Bevacizumab”. (think: Beelzebub” – and if that one confounds you – sing the words (to yourself, please) to Queen’s Bohemian Rhapsody… ) It’s trade name is “Avastin” (think: Piratespeak), and is the primary component of a Stage III clinical trial we (there I go again with the “we” thing) opted into today. If you have trouble getting to sleep, click here: http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=528955&version=HealthProfessional&protocolsearchid=8248006

Our collective low-point was learning that we need to push our start date out ANOTHER WEEK!!! Arrrggghhh! (See "Avastin - above...). Aparently this stuff is custom made to order and not done at EH, but shipped in. Crap. The planning is more involved for the extra med. Planning in general is the name of the game.

Who loves ya, Baby?

Saturday is the big day (Saturday evening, actually) – at least regarding hair… (this is Bill, by the way)

Although we have heard many different opinions on the topic, what does seem reasonable is that when facing the certainty of hair loss due to the rather harsh nature of the prolonged administration of a chemotherapy cocktail, it is best to get used to no hair before it happens. We had (“we” – ha – listen to me) thought maybe a buzz cut may be in order (ala’ Sinead O’Conner), but then we thought it might sort of look like Tracy had Mange when it did start to really come out.  So – we’re opting for the TSO (Telly Savales option).  

We did do a trial run last night, and I was able to get a pic using the timer on the camera.  It took a while, but I think I got the hang of using those old hedge clippers I had been saving for some future occasion.

More to come tomorrow. 

Ed S. (aka Bill)

  

Assignments for Friday

I'll get measured for a compression sleeve today. Evidently there are fashion sleeves to choose from - a funny little cancer clothes fact... I also have my echocardiogram (heart ultrasound) scheduled today. I had another humdinger PT session yesterday. My therapist Nancy is really working on getting my surgical arm to respond. The quivering later in the day continues but I can feel more of it now rather than just see it - which is a very good sign. I have some atrophy but this is not unusual and Nancy had me work with light weights yesterday. Watch out 'cause I'll be able to use my popeye arms before too long! I have a couple of pages of instructions for exercise that need to be worked on 5 times a day. Hmm... time it with my bathroom breaks or snack breaks they tell me. I have to continue to push fluids and keep my diet on the high protein, low carb track. More items to complete to build my strength before heading to chemo. Working on it.

Chemo Teach Session

I thought I might be expedited to chemo this Friday, but I will start on September 30th. Evidently Bill and I have a lot to learn before this next step so we're scheduled for a chemo learning session. I also have a number of physical therapy appointments they would like me to tackle before beginning. Kind of an up and down thing so far. Diagnosis then surgery; heal from surgery then physical therapy to get things moving again; move again then chemo - you get the picture. I am learning to go with this flow and taming my thoughts to see it all as progessive healing. It is a fortification that each step is supporting the checklist to good health.

4 Week Milestone Was Friday September 17, 2010

Time has gone slowly in some ways, but I now have the I can't believe I have reached this point moment too. I feel very relieved to have had surgery. One never knows how one will feel until given a diagnosis, but I was let's go, let's cut it out of me- right now. Tomorrow is the return planning meeting to Oncology. In my case I had to be at least 4 weeks post op to begin chemo. We'll meet with Dr. Hammond and map it out. I've got my port intact so what else is there right?!

So Supportive

Bill, my sister Jenn, and I all went wig shopping today. Bill found one quickly. Keep in mind it has yet to be cut and shaped to frame his face just right. I think it will work out well and you know from my blog how supportive he has been. This just proves it.

“Sign, sign, everywhere a sign
Blockin' out the scenery, breakin' my mind
Do this, don't do that, can't you read the sign?”

          Five Man Electrical Band…

Great.

I am used to getting the occasional Warning Look, but now Tracy has Warning Labels. Fortunately, these can be clipped. The restrictions, however, cannot.  So, I have short rhyme to help keep it straight.

Thanks (yet again) to Dr. McKee for seeding this one…

Left side, Strong side,

Right side, Wrong side.

Left arm, right arm,

Right arm, wrong arm.

It’s not quite Dr. Seuss-grade amphibrachic tetrameter (go look it up – it’s too much to explain), but it works.

Home Again, Home Again Jiggety Jig

Lose a part, gain a part... Got my VAD (venous artial device) today. A relatively quick trip to the operating room and home again, home again jiggety jig. (That's part of a nursery rhyme my grandfather used to recite when I was little.) The OR team was great today: Debbie, Ann, Carol, Ginny, Rainey, Ed, Mark, and of course Dr. Mckee (left side, strong side - his quote from Remember the Titans.) I think there were a couple of other staffs in the actual OR but I had already been medicated by then. Dr. Marble stopped by to say hello, and fortify me by reminding me this procedure would be a breeze! Got the bland diet for tonight and laying low. I have another procedure tomorrow with some PT thrown in in the afternoon. Moving right along and feeling great about the progress. Your emails, comments, cards, flowers, food, magazines, and care packages make the difference in my days. It's an amazing group of people Bill and I know we have surrounding us.

Camping Groupies

Our Labor Day camping crew keeps things going for us in many ways, xo, but they kept us going in spirit (look closely) on the porch of our usual spot. Some pics cannot be posted - Yeah Bob and Gary that means you two- but this one is helped along by Moe who knows how to print pics with the best of them. Thanks for keeping an eye on my in-laws. They can be a real handful. Art can talk your ear off and Gloria is always pumped for the next tennis or volleyball game. We've marked the calendar for next year.

Snap, Crackle, and Pop

Got myself a regular physical therapy schedule. Nancy is my therapist and has me working on quelling the twitching and numbness of my "surgical arm" and my armpit and my right breast. I can almost straighten out at the elbow and perhaps I'll be able to put my arm by my side soon. At present I look like I am bulking up on the right. I need to develop a swagger while walking to make the look complete. Nancy was mentioning the popping as she massages the right arm and asks if I can feel it. Nope. She explains the lymph vessels are popping while she works out the kinks. She points out the dimpling in a multiple places on the arm and tells me these are the areas of contracted vessels. Phew! Could have been mistaken for the old lady flab signs...

Hitched Up Stitch

Got the very last stitch out yesterday. Dr Marble and her assistant Susan are really helping me to work this out in my female mind. We were talking about the placement of the port, the wig or no wig, the numbness from front, back and down the arm. They are just two more pieces of my amazing Humpty Dumpty medical caregivers and I am so thrilled they are on my team. Bill had to promise not to buy me one of those caps with the mullet hairstyle sewn in. So if anyone sees Bill with one of those catalogs nearby, make sure to remove it immediately and notify me pronto.

Wig'n out...

We have been having the “Wig? No wig?” chat over the last few days. If you recall from last week’s news, the proposed chemo regimen we’re looking at pretty much guarantees no hair after the second treatment. After finding the “Driving Ms. Tracy” photo, taken a few years ago, I’m not so sure I like wigs. Or – granny jammies. Or Poland Spring water anymore, either… But – we have several weeks until this eventuality occurs.

Big news of the day though – I got Tracy behind the wheel – for a short trip to Home Depot anyway. Next time you get into your car, pretend you can’t use your right hand, can’t move your right arm, can’t turn your head or torso more than about 30 degrees, have to pull and buckle a seatbelt from the “other” side, and – every bump in the road hurts.

Driving Ms Tracy

Well friends of ours stopped by on their bike ride this morning and Tom unknowingly named the title for this weeks activities. I'm still restricted by my "surgical arm" so no driving, and very limited walking to boot. My sister Jenn, my friend Sheila, and Bill have been my drivers this past week. A little outing to a local shop is about it for me. A ride to the beach to see the heavier surf, a ride to the river to meet Beth and Rich for a sandwich, a ride to get a yogurt and back is the good life for the moment. The good life is what is in focus and each moment I must concentrate on the fact my body is trying to fight and heal every day and will be for some time. I am learning to be more patient with myself and trying not to undo any forward momentum I have toward good health. As Beth says sometimes you just have to plan what you want for lunch rather than planning on what will happen next week. A moment at a time is working pretty well.

My Surgical Arm

All the documents use the term "the surgical arm" and defines all the restrictions/complications one might encounter with "the surgical arm." They should add the cancer clothes piece! The right arm is still a challenge with swelling and restricted range of motion. Still working on the clothing aspect and Bill has rescued me in some of my attempts where I got stuck. Luckily it has been in a fit of laughter and us unearthing me from my entanglement. Funny reverse of requests in life - if I was leaving the house on a chore day it was asking Bill to refrain from using the chainsaw or getting on the roof without someone there. Now I AM ASKED to refrain from overhead clothes and stick to zippers and buttons while on my own. LOL!