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.

Monday, November 22, 2010

Giving thanks. Goodbye, hair.

Our Thanksgiving was a very good one. Andrew and I visited my sister on the east coast of Florida, and had a cozy dinner with her family. I was delighted to be able to taste most of what I ate, since altered taste sensation is one of the more annoying side effects of my chemo regimen. For about one week, I was unable to taste salt. Not even V-8 juice or dill pickles tasted salty. At the same time, sugary foods tasted super-sweet. Fortunately, that effect had mostly resolved by Turkey Day. We had an abundance of food: shrimp cocktail and baked brie to start, followed by the full turkey dinner with sweet potato casserole, pole beans cooked just right, and corn pudding that we brought. Mmm, corn pudding. Well, it was all good.Between us, we compiled at least 6 different desserts. We finished dinner, sat around chatting while we let our food digest, and then went for a cruise on their pontoon boat to see Mosquito Lagoon and the beautiful sunset.

Relaxation, good food, and the company, love, and support of my husband and family. Talk about thankful.

And, thankfully, by Thanksgiving a lot of the chemo unpleasantness had passed. There were 2 days where I had absolutely no appetite, and found it hard even to drink water just to stay hydrated. My appetite improved, but the altered sense of taste made some foods unappealing. But, other foods, like oatmeal, yogurt, grapefruit and fresh pineapple always tasted good. Then there was the chemo fog. The chemo fog lasted about the first 8 days. How to describe the fog? I can't really describe it except to say it was a funk, almost an out-of-body feeling. The fog hung around, even when other symptoms were not bad. As for the neuropathy, whatever symptoms I had (tingling in my fingers, heaviness in my feet, and, once, a shooting electrical pain across my face that lasted for about 2 hours) were transient, and are now all gone. Weird! I had exactly 2 episodes of nausea. I never threw up. Not bad for somebody who hates to throw up. I took my anti-nausea medications, and that went away, too. Aches and pains came and went. I gobbled ibuprofen round-the-clock some days. The pegfilgrastim injection 3 days after chemo gave me those dreaded "flu-like symptoms," as expected, but even that was manageable with more ibuprofen. I was able to work every day. Not a day missed, except for the day of my infusion. Incredible. Bottom line is: the chemo made me feel pretty lousy some days, but not so lousy that I wouldn't do it again. One cycle down, 5 to go.

I did have one minor chemo-related complication, a skin infection called cellulitis. A few days after my first chemo, I noticed a painful dime-sized abrasion on my elbow. Only I had not injured myself. I ignored it, and just put some Neosporin and a Band-Aid on it. After 2 days, it had not gotten any better. By 3 days, it was getting worse, and seemed to be spreading outward in an expanding circle. I was concerned, but didn't seek my doctor's advice. The last straw was coming home from work one day, with my elbow aching, and peeling off the bandage to reveal a black crater surrounded by angry red infected skin. Oh, crap. Cellulitis. Of course, this revelation occurred at 6 p.m. By then, I didn't think it would be wise to wait until morning, at which point I imagined needing to come to the Emergency Room to be admitted to the hospital for IV antibiotics. So, I call my oncologist's office, left a message with the answering service, and got a call back. My regular oncologist was out of town, but his partner was great. My chemo home pharmacy includes a supply of "as-needed" antibiotic (ciprofloxacin) to be used in case of a chemo-related fever or infection. We both agreed that Cipro isn't the best antibiotic choice for what was probably a Staph infection. I took one, anyway. Next morning, I saw him at his office, and a more effective antibiotic, a sulfa drug, was prescribed. It's been about 6 days on the new antibiotic, and my elbow looks much better. Lesson learned: don't ignore bad stuff from now on. I knew better. I know better. It won't happen again.

The weekend after Thanksgiving, we hiked 8.5 miles at the Goethe State Forest. This was important to me, since I haven't been cycling since my surgery, due to activity restrictions aimed at allowing internal sutures to heal. My 6 week post-op recheck is tomorrow, and I'm expecting to be given the okay to go back to doing anything I want.

We saw the biggest living Bald Cypress tree in Florida, the Goethe Giant. Andrew is looking up at it. All 105 feet of it. It's about 10 feet in diameter, and around 900 years old! I was tired after the long hike, but being outdoors and the gorgeous day were just perfect.

The oncologist told me that I would lose my hair "3 weeks, almost exactly to the day" after my first chemo. Only, he was wrong. Unless, of course, what he meant was that I would finish losing all of my hair at about Day 21. Because, today is only Day 18, and this morning my hair started to fall out! I knew this would happen, but seeing 6, 7, 8 strands of hair come out in my hand with each pass still came as a shock. I had actually gotten my already short hair cut even shorter on Saturday. It's now a pixie-like and very cute 'do. Not wanting to shed everywhere, I wore a pretty scarf over my hair at work today, to prevent fallout. People at the hospital who know about my cancer smiled and nodded. Those who don't yet know looked at me curiously. Thanks to wonderful friends, I have soft, cuddly blankets to snuggle up with in my chemo chair or at home. And, I have a growing collection of stylish hats and scarves. Thankful? Oh, yeah.

Saturday, November 13, 2010

First cycle of chemo is behind me, and we visit the bison on Paynes Prairie.

Yesterday, I had my first cycle of chemo. Carboplatin and taxotere. My first time ever being the one sitting in the chemo chair, rather than addressing someone else who was sitting in it. For some reason, it took 3 sticks to get my IV started. Strange, because I think of myself as having what nurses refer to as "good veins." Three sticks and 2 nurses later, the IV was in. But, it was just a tiny 22-gauge catheter, and my nurse was not able to pull back enough blood with her syringe to successfully draw my labs. I shrugged. It happens. I pointed her to a vein in my left antecubital space (inner elbow) that she didn't seem to see. Bingo! Labs drawn.

I had wanted to, and still want to, avoid having an Infusaport (a small diaphragm-like device that is implanted under the skin of the chest wall, attached to a catheter whose tip lies in a large vein, the superior vena cava, just above the heart. A special needle is used to puncture the diaphragm, to allow blood to be drawn and medications to be administered, all with one needle stick). Infusaports are great in many cases, especially for patients who need good, long-term venous access for their ongoing care, but they also can easily get infected, or clotted. From the beginning, I preferred not to have one, instead preferring to take my chances on getting stuck repeatedly for IV catheters and lab draws. My GYN thought I would have to have one. The surgeon did, too, and offered to implant it herself. So, I was pleasantly surprised that, at my first visit with him, my oncologist concurred with me. Like me, he prefers to avoid Infusaports if possible!

I figure, with 6 cycles of chemo, I have, at most, 25 needle sticks to endure, if things go as they did yesterday. I make a mental note to remember to drink more fluids before my next chemo appointment, to plump up my veins.

Once the labs were back, and I was settled in with my book, I was given a series of pre-medications: dexamethasone, Pepcid, and Benadryl, to prevent allergic reaction, and Aloxi, a drug to prevent nausea. The dexamethasone also helps prevent nausea, as does one other oral drug, aprepitant, that I took just before the chemo started. Apparently, taxotere, the first of my 2 chemo drugs I was given, is known to be prone to induce allergic reactions, even anaphylaxis. Three mini-bags of premeds went in pretty quickly, and my nurse then started the taxotere.

Within 3 minutes, I felt a warm, heavy sensation in my chest, just under my sternum, and up to my collarbone. Not painful, just warm and heavy. Well, she had warned me to let her know if anything seemed wrong, especially if I had flushing, itching, hives, or a feeling that my throat or lips were swelling. Since I did not have any of that, I kept quiet. The warm feeling passed in a few short minutes. Gone. Nothing else happened after that, so I was glad I had kept quiet. I have seen and treated anaphylaxis related to chemo drugs. I know what it looks like and, although I have never experienced it myself, I felt pretty sure that I wasn't having an anaphylactic reaction. It took an hour for the taxotere to be finished. Next, carboplatin was given over 45 minutes, with no problems, after which my IV was removed and I was allowed to leave.

The chemo room was pretty busy. During my 3 hours there, I was surrounded by other cancer patients, to the right of me, to the left, and across, all in comfy, reclining chemo chairs just like mine. We were all offered warm blankets. I took one, since I am always cold indoors where the air conditioning is cranked way up, and it was heavenly. The blanket warming cabinet has a plaque on it, stating that it was donated by the friends of a man who had, evidently, died of cancer. His friends, I suppose, felt the blanket warmer would be a nice way of offering comfort to other cancer patients. How sad and sweet.

Cancer patients came and went. One woman who sat beside me introduced herself and informed me that she also has ovarian cancer. My guess would be that she is in her mid-50s, and she is very slim and muscular, with short-cropped gray hair. She is obviously very physically fit and active, and she told me she works full-time when she can, and goes part-time when she needs to, and also teaches aerobic 4 nights a week. Her ovarian cancer was diagnosed when she had unexplained abdominal bloating. She told me she was diagnosed as Stage IV, in 2006. She told me that she was sent for a CT after 2 visits to her doctor for the same complaint of bloating. She waved her hands over her abdomen, demonstrating the extent of the swelling. "You already had ascites when you got diagnosed," I asked? "Yes, they drew gallons and gallons out of me," she replied.

Ascites is the accumulation of fluid within the abdominal cavity; in ovarian cancer patients, the fluid is secreted by the tumor itself. Ascites is considered a late sign of cancer within the abdomen or pelvis, since it takes a lot of tumor to make that much fluid. The swelling from worsening ascites becomes uncomfortable when clothes don't fit, the belly feels tight, or when so much fluid builds up that lying down causes difficulty breathing due to the upward pressure on the diaphragm.

She is now on her third regimen. (A third regimen means that she has already undergone 2 prior chemo cocktails and had recurrence after each). She was very matter-of-fact about what she has been through. I admit that I felt astonished that she is even still alive, having been diagnosed as Stage IV in 2006. Her third regimen consists of taxotere, like me, plus one other oral chemo drug that is used to treat some types of lung cancer, and which is not FDA-approved for ovarian cancer. As a side note, insurance companies generally do not pay for off-label drugs (drugs that are FDA approved for one disease, but considered experimental for other condition), and such new drugs are generally very expensive. I immediately wonder how much that must be costing her, whether her insurance covers it, whether my insurance would.

So, she knew all about carboplatin/taxotere, since that was her first round of treatment (as it is for nearly all ovarian cancer patients, I have learned) back in 2006. And so, she spilled everything she knew about my chemo's side effects. She made sure that I knew that I would lose my hair. (Of course, I already knew that). Without any prompting, she gave me her best estimate regarding when I would "crash," experiencing the inevitable fatique and wiped-out feeling that happens shortly after chemo is administered (her prediction: tomorrow). I took her name, email address and phone number, anyway. She was nice, and a health nut, like me. She might be a good source of helpful info, though maybe too much info. I realized that I have maybe now have joined the cancer TMI club, too.

Back home for over 24 hours now, I feel just fine. I have no inkling of the predicted "crash" coming on, though I have no doubt that it will come. That's chemo for you. But, maybe I owe my smooth sailing to the dexamethasone that I'm still taking, in tablet form, since it induces euphoria and insomnia. Nevertheless, today was a gorgeous day, and I felt so good that I wanted to get out and get some exercise, so Andrew and I went for a nice hike on Paynes Prairie, a few miles from our home.

Here is a video of 3 beautiful young bison who marched along the grassy trail right past us, with little regard! I was thrilled. The bison of Paynes Prairie have always eluded me until today, and then I got to be almost close enough to touch them! What a great day.