Posted Sep 18, 2008 3:49pm
Finally – with the cooling weather, the hot flashes are less brutal. During the day I wear sleeveless tops, clip up my hair and keep on going. Night time is still the worst; despite the combined breezes of the ceiling and floor fans, the flashes shake me from my sleep almost hourly. Some days I just don’t feel rested, and that can be dangerous to my peace of mind. Unrest releases the goblins in my head that make me cranky and worrisome about crazy stuff like the hair issue.
A stylist friend called this week to assure me that I will absolutely love my new hair, and I should really look forward to the transition. She shared her experiences about clients that have already gone through this, and offered to come to my house and “buzz my head” when the time comes. We had a good laugh about how crazy our priorities can be. When I found out I had cancer, my attitude was OK, fine, now we know – what do I have to do? But the hair… this is so nuts. I have finally realized this new obsession is nature’s way of dangling a useless subject to distract me from worrying about the cancer.
Last weekend the weather was glorious, and I took advantage of the temperate sunshine to start cleaning up the fading garden. I attacked the overgrowth and undergrowth without mercy, and more than once I was tempted to end the hair topic once and for all with some extensive hedge trimming of my own locks. I suspect Dave would have put me away somewhere quiet if he looked out to see me knee deep in garden waste, hacking away at my hair with the Fiskars PowerGear hedge shears, even if they are the “only hedge shears to be awarded the Arthritis Foundation Ease-of-Use Commendation.”
This hair fixation reminds me of the time I did a ropes course and discovered there are times when my body and thoughts have no regard for each other. Secured by a harness and pulley apparatus, I was to demonstrate my willingness to conquer challenges by climbing a 50 foot pole, balancing on the top and leaping off. It made sense at the time. As I started the ascent, my thoughts were, “This is going to be so exciting, what a wonderful lesson, I’ve been looking forward to this…” etc. My body said, “You are so full of it. You are going to die.” Despite the affirmations my knees turned to rubber; every cell in my body followed suit and shook uncontrollably. I kept climbing. I leaped into the void. I lived. So there. This too will pass.
On all these cancer issues, I recognize a particular stress pattern. The night before a consultation or event I’m restless and worrisome. I’m fine for the meeting, then intermittently jumbled and teary for the rest of the day. My chattering brain prevents any restful sleep that night; the next day it’s all processed and I’m fine. So last week I attempted a system overload and it actually minimized my worry time. Although the Thursday “chemo class” triggered my usual reaction, I actually had no post-funk response around the radiation meeting on Friday, or the Relay for Life on Saturday. I think I’ll cram all the appointments together from now on.
The Thursday morning “chemo class” involved a private meeting with a cheery oncology nurse, one of few people who can talk faster than I do. She rapidly scanned the pile of papers describing the process, schedule, drugs, possible side effects, what to do and what to avoid, and I signed enough paperwork to make me wonder if I hadn’t taken on another mortgage. She also wrote a prescription for a wig, but between the hot flashes and the hypersensitive skin that goes with chemo, I'll probably just stick with the colorful head wraps!
I feel great, and don't start treatment until 10/9, after I come back from vacation. Then it will be full steam ahead - 6 sessions of regular chemo (three weeks apart), and a year of herceptin infusions, also every 3 weeks. Chemo is big business and growing exponentially; I have to do 6 cycles instead of the usual four, because research in the past six months has shown it's more effective. I can't help but wonder who financed this research…hmmm…. Can you say “pharmaceutical?” 3 weeks after the regular chemo, radiation begins - 5 days a week for 30 sessions. Six months after radiation is complete, I will meet with the plastic surgeon again to see if insurance will cover refurbishing the damage that will be left in the wake of all this. Then five years of Tamoxifen. This is quite a transition for someone who never even takes an aspirin.
I have to bite my tongue as I listen to their “nutritional advice.” Sadly, because natural remedies can't be patented to produce a substantial profit, there is no financing for extensive research on the effects of nutrients/herbs/supplements on cancer, or during chemo. So they are all passed off as "dangerous" and interactive with the drugs. I have been warned repeatedly not to take any more than a single multivitamin, and especially to avoid antioxidants or herbs during treatment because of the possible interactions with the chemo. But there is no hesitation to prescribe a multitude of pharmaceuticals to counteract any symptoms. They may have horrific side effects, but at least those are a known factor.
And there are NO dietary restrictions. I find this very odd, since cancer cells thrive on glucose. The “nutrition” booklet from the American Cancer Society actually recommends refined carbohydrates, processed foods, ice cream, sugar-loaded shakes like Ensure, and other sugary foods. The logic to this is that chemo wreaks havoc on the taste buds, and since it is wiping out all the cancer cells, the most important dietary consideration is to make sure the patient gets sufficient calories in any way possible. I probably shouldn’t be so snooty about the whole thing. If and when that time comes for me I may be quite eager to dismount from my high horse, drop to my knees and plead for the extended companionship of Ben & Jerry.
I’m still waiting for insurance to approve the MUGA scan of my heart prior to treatment. When I pressed for details, Virginia of the Infusion Room reluctantly said they used to do the contrast dye injection for this directly into the chest – YUCK!!!! - but believes they now do it into the arm. If my internet research is correct, it is now injected into the arm. If not, I will graciously accept any sedatives they are willing to load me with. No wonder I felt teary after I left.
On Friday a patient brought me a jar of the "Chinese burn creme" to protect me from the radiation (miracle stuff!!), and an hour later Dave and I were sitting in the exam room of the oncology radiologist in Cameron Park. She is from SF, and said that in the Bay area, she was treating women with breast cancer in their 20's and 30's. Call it a conspiracy theory, but I find it ironic at best that each year chemical companies sell us over a hundred thousand compounds to dump into our environment, and then make more money on the other end to "cure" us from the damage. If they spent half the time removing all the junk in our food and environment that's causing and contributing to cancer in the first place, we wouldn't have to spend as much time and money treating it. But that’s another discussion.
She gently relayed what she assumed would be difficult news - for the rest of my life, I will have to get MRIs instead of mammograms. I expressed my delight and gave her the condensed version of meeting my ancestors during the recent MRI-induced vision quest. Her location facing the door prevented her from slowly backing out of the room, which may have been her choice at the moment. Dave remarked later how her expression changed from empathy to concern that I had probably lost my mind. I wasn’t embarrassed in the least – I intend to make the best of whatever they throw my way. Well, except that possible – but not likely – needle-in-the-chest thing.
The bottom line is that all the health care providers are saying my risk of recurrence is extremely low, but they have to bombard me with all this junk because of the HER2/neu gene. The other good news is that all the medical folks and survivors I've met with this week keep reminding me that everyone's response is different, so who knows? Some people actually breeze through this with little or no reactions, and I plan to be one of them.
On Saturday a friend invited me to join her group in Placerville for the Relay for Life cancer fundraiser. When I told Dave my plans, he immediately jumped in to join us, which is very special to me. He never hesitates to rearrange his work schedule to take me to all the medical consults; he's such a love. Our walk was at 5:00 p.m., and the late afternoon was balmy and beautiful. She presented me with a sparkly pink beaded necklace, her “Courage” bracelet, and a purple “I’m Living Proof” t-shirt. One of the discussion topics during our walk was at which point one is eligible to wear the “Survivior” t-shirt. Five years? Post-chemo? Post-surgery? Dave concluded that once you get the diagnosis, you are an official survivor - until you’re not. Works for me.
The bands that played throughout the day and night were fabulous, and volunteers of all ages put obvious effort into organizing the event. The relay path was lined on one side with luminaries, and on the other with information and memorial booths. Each white luminary bag was decorated by the kids that volunteered, and were labeled as either “In memory of…” or “In support of…” It was heartbreaking to see so many luminaries, representing too many victims of this disease. On the other hand, it was so uplifting to know there is such a high level of concern and awareness, and talk to women who have bravely survived much worse than what I face. They look and feel great, offer such positive support, and I always make new friends.
After our walk three of us claimed a picnic table in the shade to watch the continuing relay and enjoy our smorgasbord of snacks. Cooled by the light winds of the early evening, we watched the full autumn moon rise above the circumference of trees. We hooted and hollered our appreciation for the band and the relayers that passed our table, some walking, some dancing, others on canes or in wheelchairs. I chose to leave before the ceremony of lighting and reading each luminary. Over the past several months I’ve found that so much information at once about cancer can get overwhelming and depressing, even if it is supportive. It’s just too much to grasp sometimes, and I can only take it in small doses. Sometimes it’s just too much to become so connected to how deeply immersed I am in this.
So it’s back to the garden for a metaphor that will make sense of all this madness. Despite my attentive care, nuts hedge and Bermuda grass have made a merciless invasion throughout the beautiful planter strip around the lawn, now gradually creeping into the hillside garden. The only way to control it at this point is to dig up all the affected plants and spray the weeds with whatever herbicides will do the job. I hate using this nasty poison, and I know it will wipe out the healthy plants as well, but my conservative efforts were no match for the aggression of the weeds. Once this malignant growth has been contained and removed, I can make a fresh start with a nourishing foundation, and better knowledge of how to keep the garden healthy and prevent the weeds from returning. As much as I will miss the temporary loss of vibrancy and color, I know some things need to be sacrificed. In the long run, it would be counterproductive to fertilize anything while I’m trying to kill off the stuff that could eventually choke the life out of the entire garden.
Bring on the Roundup… I’m ready for the overhaul.