Tuesday, February 8, 2011

Hair loss, wig or no wig, and 4/5 of the way through chemo, I take a chemo holiday


So far, for me, the hardest part of going through cancer treatment has been all of the unknowns. Not knowing what the surgeon would find. Learning that I had a tumor, and not just a cyst, and then having to wait for pathology results to learn whether it was malignant. Having to get established with another new doctor whom I knew nothing about, and not knowing whether I would agree with his advice and even want to follow it. Just all of the unknowns pertaining to the chemo drugs, their side effects, and what may or may not be an especially debilitating or permanent side effect.


I am behind in my blogging, but I want to tell this story about how cancer, and its treatment, affects women. When I was getting my second infusion, across from me sat a young woman (I later learned that she is 21 and a college student), who was getting her first chemo. For what, I do not know. I didn't ask, but I would guess lymphoma, since she's in her 20s. She was accompanied by her grandmother, a very congenial woman who soon struck up a conversation with me that began with her inquiring as to whether I had already picked out a wig. I replied that, no, I hadn't, and that I had no plans to get a wig, "I'm a cyclist. A wig just wouldn't do too well under my bike helmet." She laughed and said that her granddaughter was trying to find a nice wig, and I understood without her having to say more. I can relate to a 21-year-old college student being more self-conscious than I, that she would maybe not want to have to answer questions. Different for me, since I'm older, of course. Also, that cancer is all around me at my workplace, and I have no fear of openly being a cancer patient, not in front of my colleagues or my patients. Where else could I be more accepted? Still, I hoped I hadn't put her off with my comment about the wig, but then the younger woman spoke up and complimented me on my hat. I had on my new red wool beanie, hand-knit and softly brushed, with a row of deep red glass beads carefully sewn around the brim.


We got to talking about the whole hair loss thing. I mentioned my endless online quest to find suitable headwear, knowing at the time I was diagnosed that I would be going wigless. I mentioned Etsy (where I had gotten my beanie) as a good place to find unique, stylish hats. Etsy is an online marketplace where hand-crafted, unique merchandise and one-of-a-kind vintage items can be found.


We both agreed that there is an awful lot of really bad chemo wear out there. She had been looking, too, so she knew what I meant. I told her that I had found the American Cancer Society's TLC website (http://www.tlcdirect.org/default.aspx) particularly depressing and off-putting. I had checked out TLC as soon as I knew I'd lose my hair. Frankly, I found most of their styles to be pretty awful and unflattering. Terry cloth turbans and red bandanas? Really? It's not bad enough that we have cancer? Even when I feel my worst, I don't want to look like I do. Or worse, that I just don't care.


I told her that my first chemo-related fashion purchase was a couple of Buffs. Buffs are long, seamless tubes of soft, stretchy polyester that can be worn in various configurations over the head, face, and neck, for sun and wind protection, mainly. Think: doo-rag. They can be worn pirate-style, French Foreign Legion-style, beanie style: you get the picture. They come in lots of different colors and patterns. So, I bought a couple of Buffs online long before I started to lose any hair, and found them to be soft, comfortable, and uncomplicated. They are lightweight, though, so not really warm enough to wear alone on a cold day, but they are great around the house, to sleep in at night, or worn under other hats, or for running out to the mailbox. When I remember, that is. I went outdoors on an especially cold day recently to put the trash out and then looped around out to the road to put some letters in the mailbox, where I suddenly realized that I had nothing on my cold, bare head! My apologies to any of our neighbors who may have seen that. So sorry.


Etsy is a great source to find something a bit more work-appropriate and professional-looking. I quickly found dozens of beautiful hand-knit, crocheted, or sewn wraps and hats to choose from. My new beaded beanie is one of 3 hats that I purchased on Etsy. I am happy with all of them. And, none of them scream "homeless bag lady." (You listening, TLC)? I also found a really gorgeous vintage 1960s, mint-condition Emilio Pucci Italian silk scarf in my favorite colors (bold purple, hot pink, black, and silvery gray). Che bella! I LOVE IT!


And, I have been cycle-commuting to work again when I am up to it. The first time back on my commute bike after the passing of the chemo blahs coincided with morning temps nearing the mid-30s. It sure felt good to be back on that heavy old bike on which I've made that trip so many times. Good, too, to see the changes along my familiar commute route, like the Christmas decorations that weren't up when I last rode through, before my surgery. Or the 2 new energy-efficient, Cracker-style homes being built where empty lots recently stood. It is reassuring to know that life goes on no matter what, and to witness it when we can.


My third chemo, on 12/23, was pretty bad by comparison to the previous ones. Awful fatigue kept me bedridden for 3 days. I had a lot of queasiness that lasted for several days. Plus, the usual numbness and tingling of my feet, hands, forearms, and around my mouth. All of which went away within a few days. Food, of course, tasted awful, but that has become expected. Luckily, I had taken the week between Christmas and New Year's off as vacation time. After the few really low days, I felt remarkably better with each passing day.


I saw my oncologist again on the day of my fourth chemo, 01/12/11. He always asks, so I told him how the third cycle had affected me. He got quiet, then pondered aloud reducing my dose. Because I am the patient and he is the doctor, and I didn't want to seem like a troublemaker, I said, well, why? I am fine, now. I'm okay. I don't think that's really necessary. He didn't argue, and I got my fourth chemo dose that day, at the same dose I had previously been given.


Once again, 2 or 3 days later, I was pretty wiped out. Chemo day is Wednesday, and the Monday after was a Federal holiday, so I had the day off. Thank goodness, since I felt like utter crap by then. The next day, I felt equally awful and called in sick for my first unplanned chemo sick day. Ugh. I hated doing that. I had the same fatigue and queasiness as I had after my third round. But, in addition to the usual stuff, after chemo #4 I developed a strange new muscle pain in my left triceps, so bad it awoke me from sleep one night. Wow, I'd never had THAT before. As after my third treatment, the numbness of the feet and hands was also back. My left arm and hand, and left foot were the worst. As previously, the numbness got better in a few days, but the upper arm muscle kept aching. The food thing was the same as always, bloody awful. I ate little or nothing for the first 5 or 6 days, as usually happens. The nausea and neuropathy got better, of course. It always does. We attended a chili cookoff picnic at a local state park, and I went on a bike ride with our cycling club. Andrew pumped up my road bike's tires, which were utterly devoid of air, the bike had been unridden for so long. I rode at what I felt was a pitifully slow pace. I was hoping for the best, but knowing that my arms were hurting with any upper body activity, I was happy just to ride again, even if I would have gone short after 5 miles. I didn't, though about 7 miles into the ride, both upper arms ached as though on fire. It was pretty bad. My legs felt fine, but I felt a bit winded, too, and just attributed that to being sadly out of shape from few miles in the saddle since this all began. I completed the ride, but I felt as though I might never again ride my road bike without agony, and the thought was very distressing. I continued to hope that time would make this better. The next day, I went on a cleaning rampage and tackled tidying the kitchen. Sweeping and mopping the kitchen floor, I had to stop and rest about halfway through the task, my arms ached so badly. I only recall having similar pain after a day spent painting a ceiling, or cutting up tree limbs with the Sawzall. Only, I hadn't been doing anything of the sort. I have been a sedentary blob, for the most part, fitting in my household chores on my "good" days, and letting them go on the not so good ones. Chemo will suck the life out of you, and stomp out all of your will to do yard work, or carry a full laundry basket, or even go to the grocery store when you're out of milk. But, the bad stuff gets better, the energy returns, and things get done again. That has been my experience. It's temporary.


When the arm and calf pain persisted, and my next chemo loomed in a few short days, I was concerned. Concerned enough, since the pain was not going away, and not really getting better, to start seeing an acupuncturist. I told him how climbing 3 flights of stairs at work left my legs burning and feeling exhausted. How washing up a coffee mug at the kitchen sink made left hand numb and both forearms ache. Most miserable and depressing was the thought that maybe this would never get better. The acupuncture has helped me a great deal, especially that first day, when I was home sick from work, and would have done anything to make the side effects of my chemo go away. My first acupuncture visit left me so relaxed, serene, and hopeful that I now go twice a week, some days to work on specific symptoms, some days to just prepare my body for the next chemo.


As my next chemo loomed closer, with the pain still unrelenting, even with acupuncture and Vitamin "T" (time), I called my oncologist's office. I had decided that I needed a chemo holiday. My chemo is what is called adjuvant chemo, meaning that it is given in addition to surgery that, in theory, at least, should have cured the cancer. Adjuvant chemo can be thought of as the icing on the cake that is surgical removal of the cancer. So, taking adjuvant chemo is optional. Well, sort of. Of course, I want to optimize my chances of never having a recurrence of my ovarian cancer. And, I realize that certain features of my tumor and my own desire to have the best possible survival chance make me lean toward taking the full 6 cycles. But, I always told myself that I would stop the chemo at any time I felt it was just not worth it. To be completely blunt and honest, not everything in medicine is black and white, and I am not willing to subject myself to just anything that is recommended if the consequences of a recommended treatment are not acceptable to me. I think my life is in order, and I am, frankly, not afraid to die when my time comes. If a treatment might leave me unable to work, unable to ride my bike, or enjoy an active, happy life with my husband, then I am less inclined to do it just for the sake of doing it.


My oncologist was out of the country at the time my concern about the pain really got ramped up, so I spoke to his nurse practitioner instead. I told her all the details and made sure she understood that I am convinced that my complaints are directly related to the chemo they have given me. I also told her that I would not be taking any more chemo until we got to bottom of the problem. She seemed alarmed by my concern, and began by telling me that my pain is unlikely to be due to the chemo. WTF? Really? What I needed, she said, was an MRI of my C-spine, that I have a neck problem. Huh? Really? A neck problem? I was seething inside, feeling misunderstood, as though she thought that this was all in my head. I was told, "It's very unusual for someone getting your chemo regimen to have this much neuropathy. And, anyway, neuropathy is usually generalized, not confined to specific locations." I told her that my experience differed from her understanding, that my neuropathy most definitely is not generalized and in fact moves around, that I have at times had numbness around my lips, around my eyes, on one cheek, one hand and foot at once, both hands and both feet at once, and that I had never had any pain or numbness in a whole host of body parts. She was adamant about me needing the MRI of my neck. I did not stop her from ordering it, but later considered canceling the test when I got home, making some excuse, because, above all, as a nurse practitioner myself, I knew that I would NEVER order such a test without first seeing my patient and performing a physical exam. More importantly, I knew that I have absolutely no neck pain that would warrant my needing an MRI. I was still pissed at home that night, but ultimately decided to just go ahead and get the MRI, mostly because I felt sure that it would be completely normal, and I would somehow be vindicated. Ha!


The MRI was done at 9:30 that night. I learned the results the next day, when I came to see her. I was told that the MRI showed some arthritic changes called osteophytes (bony spurs). She seemed happy to have found the problem, and inclined to blame my pain on that. Except, there was no evidence of spinal nerve compression on the MRI, and so nothing to conclusively explain my symptoms. Especially the pain in my lower legs. When I pointed that out, she then suggested that maybe anemia was the reason for my pain. Huh? Anemia? Okay, my hemoglobin has been low for some time, but pretty much exactly the same number as it has been since one week after my first chemo! I questioned her as to why no one in her office had been concerned enough about my anemia to address it until now. She said that the low hemoglobin probably meant that my iron was low, and I that I needed to either take an oral iron supplement or come in for an intravenous iron infusion. Okay...except I knew that they had never actually checked my iron level before, ever.


While in the office that day, I refused to let her speculate. I insisted that I know my own body, I've had 4 prior chemos, everything bad had always gone away until this last chemo, that what I was feeling now was different, and not improving, and I was scared that the problem would become permanent if I got more chemo on top of damage to my nerves from prior chemo.


I'm not sure what happened next, but she looked at my records in the computer, and accessed my chemo orders. When she reviewed my past chemo dose, suddenly her demeanor changed. "Oh, my God," I think she said, or something equally emphatic, "you are getting a BIG dose of carboplatin, as much as we ever give ANYONE!" "You are at the maximum dose." I was speechless, at first. No more mention was made of my C-spine, or my hemoglobin, or my iron. She excused herself to go consult with one of the other MDs in the practice. She came back, "oh, yes, definitely. We are going to reduce your chemo dose." All of could think was, thank you, baby Jesus.


I go back to resume treatment at my new, reduced dose chemo tomorrow. My oncologist is back on Thursday. We are gonna have a serious talk.

23 comments:

Lisa said...

Good Luck Ally. It's a Good Thing you know What You are doing!!!!! I can not believe you being a NP that this was not thoroughly discussed and explained to you!! Yes, you have that talk with him, and I hope the next and ?Last treatment is Much,Much better!!!!!
I will be thinking of you!

gz said...

It is sad to think that you only really got through to them because you know what you are talking about.
The gods help those who don't.

Glad to see you're back on your bike. It makes such a difference physically and mentally, even if you can only do a little, to be back in the cycling fraternity.

I like your comments about Etsy. I've just tentatively launched my own Etsy shop.....and it is hard resisting all the other good stuff on there!

Thinking of you, hope you get some answers on Thursday

justLacey said...

Imagine how that would have gone for someone who is not medically knowledgeable or who is not a good advocate for themselves. I am glad you were able to finally get her to hear you.
Whenever I am feeling down about my life, I remember all that you are going through and remember that things are not so bad. You are inspirational in my life and I am sure others. Thank you for writing about your journey. I hope the rough part is over soon and things are back to normal.

Caryn said...

The best thing you can do is be your own advocate! You are absolutely right, only YOU can know your own body to know when something is seriously wrong. Being proactive (as my Momma always says) is the best thing you can do for yourself and for your doctors. They don't always know everything, and sometimes patients are too quick to let the doctor decide. I admire so much your comments about not giving up your best-loved things in life in order to complete what someone has prescribed as the "best course" for your life. I know that I, too, would infinitely choose a shorter but quality life, in order to actually LIVE. I love that you got back on your bike, cleaned the kitchen, etc. I never knew how much doing laundry makes me feel "normal" until I couldn't do it at all a couple weeks ago. It's a good reminder to enjoy every day, every hour, every moment. We love you both, and pray for your well-being. And we love that you are blogging again, it's important for us all to hear your words.

wheatgerm said...

good luck with the treatment

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bloomingrose said...

Hang in there baby - I was the poster child for chemo side effects and I am here. Still on this planet for better or worse. I pray that all the practitioners that work with you will be wise - and that your way will be made easier.

GoldenInK said...

ur amazing!!

Lynda Dishner said...

I have just read your blog for the first time tonight. Found you by accident. I see it has been a very long time since your last blog. I do hope you are ok and doing great.
May God bless you and heal you in Jesus name. Lynda Dishner

gz said...

Hope that no news is good news.
((hugs)) anyway

gz said...

just seen on your bloglist that you visited mine six hours ago (if you can trust that!)
Hope the weather isn't too cold with you

Swirling Regret said...

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Heather said...

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gz said...

still sending best wishes xx

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Babar said...

good luck with the treatment

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Nolan Taft said...

I'm 10 and i survived Cemo and cancer it wasn't easy but you will get through it just never give up!!
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