Chemotherapy – looking back after 6 months
I’ve intended to write about chemotherapy for a long time. This seems an appropriate time – just a year ago, in mid-November 2010, I was recovering from a lumpectomy and considering my treatment options – what type of radiation, what type of chemo? Six months ago, mid-May 2011, I was recovering from the last chemo treatment and preparing for radiation. Today, those treatments are behind me, although I continue with a targeted treatment (herceptin) that has less debilitating side-effects than chemo. If I had written this earlier, the anger and anguish I felt would have permeated it. Now my feelings are subdued – less intensely angry, I feel relief to be done with chemo, but I feel a certain level of fear that, having been poisoned, I may never again be the same.
In the eyes of my oncologist, I did well with chemotherapy. Objectively, I suppose that is true. I know that others had a much worse experience than I. I never had an infection, although my white blood cell count dropped; I was not hospitalized; I experienced little nausea and no outright vomiting, thanks to strong preventive medications; I continued to work except for my doctor appointments and treatment days. Nevertheless, having chemotherapy is being infused with poison (cytotoxin) that kills cells throughout the body, and I felt it acutely. I felt angry that a 2 centimeter clump of rogue cells necessitated an all-out chemical attack on every actively growing cell in my body. Physically I was weakened and racked with pain; emotionally I was terrified, saddened and angry.
Chemotherapy should be called cytotoxic cancer treatment – that would be accurate. The systemic effect of the drugs (for me, carboplatin and taxotere) was overwhelming, although taken one at a time, the effects could be manageable. Here is a list of effects I had during the 6 cycles of treatment:
- Loss of hair, all over my body
- Shedding of skin cells, to the extent that the interior of my clothes were coated with white specks at the end of each day
- Having the skin on my hands redden, burn and peel
- Having constipation for a few days, followed by days of cramps and diarrhea
- Experiencing pain and constriction in my throat while swallowing
- Having a constant bad taste in my mouth and finding many foods completely unappetizing
- Being able to eat only small amounts at a time
- Feeling the fieriest heartburn ever
- Having a dripping nose and watering eyes, sometimes with blurred vision
- Having regular nose bleeds, though thankfully not prolonged
- Experiencing excruciating bone pain in my lower legs and spine
- Becoming anemic and having no energy
- Having my legs feel like dead weights when I tried to walk up stairs
- For various reasons, having difficulty sleeping
- Dying toenails and fingernails – turning black or white and partially separating from the toe or finger
- Neuropathy – tingling and semi-numbness in fingers, toes and up to my sock line on my calves
I do feel frustrated that the treatment is so difficult to undergo, and I know others for whom it was worse. Why not just say “No”? It’s tempting to think that once the tumor has been cut out, the problem is fixed. Well, my choice was based on current medical knowledge and statistics. I was unlucky enough to have a “nasty” tumor – one having mutations that made it an aggressively growing SOB. Chances were good that it had sent out little cells (with the same growth factors) that could start growing in the future. The treatments I took and am still taking have been shown to greatly reduce the chance of recurrence. In short, I chose the poison so that I would have the best possible chance at a long disease-free life.
Most of the side effects are over now. I can walk up stairs with ease, and enjoy biking. I have hair and new fingernails.
However, my toenails are slow to recover and I still experience neuropathy in my toes. I hope that the fatigue will abate with time and the conclusion of the herceptin treatment.
Mentally and spiritually, I feel benefits from the ordeal – a certain re-ordering of the priorities of life, a loosening of attachment to things that aren’t so important. And yet, in my haste to put the experience behind me, I find it easy to fall back into old habits, to want the comfort of having things just so. It has been a life-changing experience, but not in a great epiphany way. I am still sorting it out, still regaining my physical strength and reflecting on my goals and hopes for the future.
Wig: pros and cons
Advantages of wearing a wig:
1) You don’t have to worry about messing up your hair at night – just take it off and put it on the wigstand.
2) You can comb your hair on the wigstand, so you can see what the back looks like without a mirror.
3) When it’s hot, you can cool your head by taking your hair off (although not in all situations.)
4) When it’s cold, your hair warms your head like a snug cap.
5) You can take off your hair to shampoo it, and hang it to drip dry.
6) Having a wig reduces “Bad Hair Days.”
Disadvantages of wigs:
1) If you comb your hair on your head, you may pull it right off.
2) You may forget that your hair is really plastic, and melt the ends of the hairs by the blast of heat when you open the oven door. It happens in a fraction of a second!
3) When it’s hot, if you can’t take the wig off, you feel like you’re wearing a snug cap.
4) If you leave the wig lying around, your cat or dog may think it’s a great toy – a realistic stuffed animal to be ripped apart.
5) If you are careless about where you put the wig, you will have a fit trying to get out the door in the morning: ”Where did I put my hair? I can’t leave without my hair!!”
6) You can trim a wig, but it won’t grow back.
Chemotherapy – done!
I should have posted this in May after I had my sixth and last chemo treatment. However, I still am aware of side effects six weeks after that last treatment. So when do I declare it done? When the day comes that I look up and realize that I haven’t thought about any side effects for a couple of weeks. That means my hair will have grown back (it’s starting – I’ve got a decent crop of fuzz on my head now), and I won’t feel numbness in my toes.
The good news for now, though, is that I don’t have to go back and be infused with those cytotoxins – taxotere and carboplatin – again!!!
That darn hair: Thoughts during a radiation treatment
That darn hair! Or can I really call it hair? It isn’t my hair, even though it on my head and tickling my ear. Properly speaking, it is a plastic, but very realistic, strand of imitation hair – wig hair. This is the wig that I have been wearing for five months, since my real hair came out due to chemotherapy. Now this strand of wig hair is tickling my ear, and I can’t move. This is the second time today I have had a medical procedure requiring me to lie perfectly still. This time I am undergoing radiation therapy. I have seen the diagram of how the radiation beams are carefully aimed to target the tumor bed and avoid my heart and sternum (where the bone marrow makes red blood cells). So I can’t raise my arm to remove the offending hair from my ear. I try not to think about it; the treatment lasts just a couple of minutes – I can stand a tickle that long, I think.
This is my 15th treatment and the technicians no longer give me the instructions, but I know them well. “Lie still, don’t move, and breathe normally.” I’m glad they don’t give me these instructions each time. For some reason the instruction “breathe normally” has the opposite of the intended effect. Just think about it – breathing normally is what we do without thinking about it. After being told to “breathe normally,” I find myself breathing shallowly, and then wanting to take deep gasping breaths. Best not to draw attention to breathing!
This whole thing with the hair in my ear is driving me crazy. I want to just kick my legs in the air and scream! It is a true indicator of just how weary I am of medical appointments and medical procedures.
Successful Conclusion of First Treatment
5:05 Finally left the Cancer Center.
During the remainder of the taxotere infusion, I experienced brief tingling in my pinkie fingers, an expected side effect (not specifically the pinkies; it can happen in any extremity, but my pinkies were the first thing affected and if I’m lucky, the only ones).
4:15 -5:00 I received the final medication: carboplatin. A platinum based med, it can impart a metallic taste in the mouth. I don’t really notice that yet, but I’m not feeling really hungry tonight. No real nausea, just a vague sense of unease in the stomach.
Overall, I am thankful that it went well, despite being almost 7 hours at the Center.
Birthday gift: Day One of Chemotherapy
3:05 pm
It’s been a slow day so far, and that is a good thing! That means that I have not had any adverse reactions. Of course, I still have one more drug to go.
First I took Benadryl and Tylenol by mouth. Then I started with an IV drip of decadron, a corticosteriod to prevent adverse reactions to the strong and toxic drugs my body will receive, and Aloxi, an anti-nausea medicine that will last 3-5 days. At this point, I probably had more medicines in my body than ever before. And no chemo yet!
12:30-2:00 Herceptin No reaction. Boring – Hooray!
2:10-2:45 Emend, another anti-nausea med
2:45 Taxotere When the RN started this drip, she advised me to “yell” if I felt anything different. What is “yell”-able, I wonder? Not that twinge in my shoulder – that’s been happening off and on all day.
Sinuses and Hawk on a summer morning, part 2
One point of my story was how much is to be gained when you step out of your routine. I wouldn’t usually have been outside in the heat, sweating. (Sweating in itself is probably healthful.) If the hawk’s calls hadn’t gotten my attention, I wouldn’t have tilted my head back almost 90 degrees to look up. When I did that, I saw not only the majestic hawk, but other silent creatures flying about – birds, butterflies and the possible hummingbirds (but likely the moths that mimic a hummingbird). So much life and beauty in this world can be missed because we don’t go out, or don’t look up, or slow down to look around!
And because I tilted my head back, I experienced some sinus relief. I experimented this morning with tilting my head backwards. Although my bathroom ceiling is not as fascinating as the open sky, I again experienced some sinus clearing. And I’m using the Neti pot. Slightly annoying to use, it is very effective in reducing nasal inflammation and I hope, cleaning out allergens and irritants.
A Summer Morning: Hawk, Sweat and Sinuses
This is one of those small magical experiences of the type: ”I wouldn’t have been there at all if I didn’t have a promise to keep.”
I wouldn’t have been out in the sun this morning, had I not promised to water plants for my husband. It may sound like a simple task, but on our 5 acre property, the plantings are on the sunny perimeters. My husband has a water system of great lengths of hoses with connectors and branches that rivals a good corn maze! Read more…
I just learned about these; I am encouraged to find them.
http://www.propublica.org/about/
http://www.publicintegrity.org/about/
As big news organizations face budget problems, their staff shrinks and investigative reporting suffers. These non-profits represent a new means of support for digging into issues of concern to the public.
Invitation to Serious Reading
I finished reviewing my “serious summer reading” and I invite your comments. I have been one with my head in the sand about government policies and globalization, because it is complex. I don’t know that I have found the best sources, but they were a variety of sources – different topics, different publishers, different & unrelated authors – and all well documented. Yet the message to me was the same: ”we the people” are being ruled by a government that is not “for the people.” We cannot learn what is really going on from politicians, political groups or movements, or daily news media. It is up to us to become as knowledgeable as we can and to make use of the best information available as we vote, make purchases and engage in conversations.
