Final appointment with my medical oncologist. Well for at least a few months. Discussed the usual, fortunately no horrid side effects from final chemo treatment #6 three weeks prior. #6 in a way was easier than #5, less fatiguing with less intestinal upset. My eyes felt burned out and dry from the Taxotere, a rarer but not undocumented side effect, that gradually are starting to feel more normal. Doctor conducted a final exam, punctuated with a flu shot, I believe only the second one I've ever received. He advised me, like I didn't know, that I am "blessed". And that is completely true. I'm blessed to have made it this far with very little to complain about physically. Blessed that my upbeat attitude has, for the most part, remained intact. Blessed that I have had a "very good" response to the chemo. My mass is shrunken to a bit less than half its original size. It is difficult to measure as it has retreated deep inside my chest, like it's searching for safety and hiding away from any additional chemical combat. Blessed that it will realize a rude awakening on October 25th!
This final appointment was like an amicable breakup. Our dates together were nice, we got to know one another well, had some laughs along the way, but it's time to move on. And with a handshake and a genuine wish for continued health, I left. I do need to return after radiation is complete, but in a way, strangely saddened that I was leaving his office for the last time for a long while. Of course I am thrilled to be over this hurdle; but at the same time this facility, filled with such caring individuals represents warmth, hope and comfort, and after a while, familiarity. Strangely, it has come to feel like a second home. That I was leaving for a while represents an amazing achievement I am only beginning to fully comprehend, but also serves as a gentle reminder of the new set of unknowns that are lurking ever closer in my immediate future.
October 5 - A few more angels here on Earth
Anyone who knows me knows that I have a hard time asking for help. I finally met my match when I found out about a small organization that does free housecleaning for anyone of any age and in any stage of treatment of any type of cancer. I simply could not resist. www.canswerlink.org. Just the sweetest women I've been honored to meet. Green cleaning products, they dedicate an hour of their time to clean where ever needs it most in your home, and out the door they go. Not only is it next to impossible for me to ask for help, especially with something that I perceive to be my job, but they demand nothing in return. I couldn't even brew them some coffee. Message? Asking for help has its rewards. I should try it more often! They're coming back again next month and every month I'm still in treatment.
October 7 - Radiation, okay so it's not Cancun, but...
Yet another step in this process, to follow surgery. My radiation will be right downstairs in the hospital from where I had chemotherapy. Was introduced to my physician, who had already reviewed my file and had a treatment plan all laid out for me. 28 radiation treatments, Monday through Friday, roughly 6 weeks. Some time was already built in for holidays, in addition to six weeks' recovery from surgery. The amount of time in the machine is measured in seconds. I was given a tour of the facility. Coffees and teas in the waiting area, gown up, lay in the machine a minute or two, then out. I need to be wary of burning, not unlike a sunburn, and mild fatigue, not unlike spending the day outside. That's it? Cakewalk compared to chemo. *I* can certainly handle a little burn. I was given a 'welcome' packet (even though it seems like this hospital has become my second home, and people say hello like you'd say hello to your neighbor) and invited to take part in holistic services in addition to the radiation...reiki, reflexology, meditation, yoga, painting. This treatment is exceptional. Time to embrace it. The worst is over. I made a promise to myself I'd try some of these additional services while there, which will be daily anyway.
And now....the waiting begins. A watched follicular unit never grows (so it seems)....
Okay, so dramatics aside, time for a little selfish vanity. Allow me a mini-rant. Basically, I want my hair back. Pure and simple. Chemo's over, I understand that hair must be sacrificed in order for the more important work of these dreadful chemicals to be done, I get it. They did their job! I am still so mad that hair matters, it really does, and that I still don't have any. I want my look to reflect how I feel. I am so over the exterior 'cancer' persona. I lost my hair nearly five months ago. First of all, my head is freezing. I have never experienced this sensation before! And I still hate to wear a hat. The synthetic wig is nice, most are fooled that it's not my hair, but it's not fun to wear anymore and its novelty has officially worn off. Real hair wigs just creep me out and they must be styled just like your own hair. I want MY hair. I don't care if it's wiry and gray. Or stringy. Or patchy. I just want hair. I dream of hair, at least once per week. I dream I have my own hair. I once dreamed I had Gianna's hair. Then I dreamed I looked like the Grumpy Old Troll (for those of you out of the preschool loop, a character on Dora the Explorer). Then once, I dreamed I had Kobe's chocolate with salt fur on top of my head. And the weird thing is, I remember being okay with all of these - I had grown something from the top of my head and in my dream, I am at peace. I wake up in the morning sometimes almost surprised I still don't have hair. I over-analyze hair on people on TV. Like, "your hair makes you look like...
- ...George Clinton!"
- ...like you're trying to be 25...and you still look at least 60!"
- ...that's not hair! It's a rug...a smelly stained rug that needs to be put out of its misery!"
- ...a turnip!"
October 12. The countdown is on!
So in spite of my hair obsession, I went to the local American Cancer Society chapter office and took advantage of a head cover giveaway. And what do I get? A really short wig. I figure, I need to prepare for short hair, so I grab a short pixie cut wig, inexplicably named the "Annie". Between the long one, Annie and the hair halo, I will not need Halloween costumes for many years to come.
After deciding that Annie should be employed as my new temporary lid, we walked down the hall of the ACS and perused the donated assortment of various headwraps and hats. A woman then came in with her husband. She had just started chemo and her hair had just started falling out. She had to stop treatment because she could not handle the side effects. It was her first visit to the ACS and was clearly still trying to come to grips with her diagnosis. With assistance from an ACS volunteer, she selected a sleep cap and said to her husband, "so I can wear this in bed so you don't have to wake up and be freaked out by my white shiny head." He replied to her, "I really don't care what's on your head. Just be there...next to me."
And with that, I'm reminded how far I've come. I can wait a bit longer. I might act like a Grumpy Old Troll from time to time. It's just hair. I'll be thrilled by what I see in the mirror...in a very short time.
Next was a follow up with my plastic surgeon, who has the task of putting my body back together following the surgical tumor ambush on October 25th. He advised me that he will be able to retain far more skin than I thought. CT scan results show good blood supply. Hoping that the high anticipation of the event itself will render it anti-climatic. Let's get this done already. I really am quite impatient at times.
October 15
That day at the shore finally happened. So I wasn't in the swimsuit like I envisioned. And no, it wasn't for a week in that shore house I imagined, just a half day. Bundled in a few layers of fleece for protection from the brisk wind. I sat with Sean on the empty shore and watched the waves and stared back at the seagulls, who to Gianna's delight approached very closely, wrongly assuming we had food. I sat with Sean and watched the girls draw shapes in the sand with sticks they found, build a 'castle' with piles of damp sand, and decorate their creations with shells. They were so happy chasing each other around in a game of relay-style Tag they'd invented. I thought about that vision of myself I'd had of walking on the beach with all my hair back in the swimsuit with the goods on top looking as they should. No, not quite, but everything that mattered to me was right here at the beach. My husband. My girls, euphorically and blissfully happy by simply being able to run about safely in their bare feet and enjoying their surroundings. The peace of the scene's honesty and the emptiness of the shore. It felt like one of those capstone moments that will stick with me. Frozen in time. I need to make some more of these little moments happen. A delicious short escape from the everyday.
October 18 - ACS Walk
Just another reminder that I have been indoctrinated into a cult of strength, support and hope. Like a forced pledging into a huge sorority. A least a few thousand survivors. supporters, aunts, uncles, dads, children, friends, pets. I, with my friend Rebecca who survived leukemia as a teenager, marched up to the Survivor's table to collect our gear to proudly wear. Bright pink tee shirt and baseball brimmed cap that covered my head but still made my baldness underneath appear obvious and that's okay. Random, unsolicited sentiments of "god bless", "best of luck", and "congratulations". A team of junior-high cheerleaders chanted my name at the midway point to the delight of my girls who shouted along with them. The celebration atmosphere was uplifting. A perfect way to end the weekend. Just nine days away until I can consider myself closer to being cancer free.
No comments:
Post a Comment