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by Dianne Armitage
When I was diagnosed with breast cancer back in 1996, I went through both chemotherapy and radiation. The chemo protocol used on me back then was something known as CMF. CMF is a combination of three chemotherapy drugs: cyclophosphamide, methotrexate and 5 fluorouracil (also known as 5FU). This was pretty much the standard of care at the time, and with nine years of health after undergoing this regime, I felt it had worked well for me.
So, when I was diagnosed again in 2005, I thought I would probably undergo another round of CMF. Heck, if it worked once and provided me with several years cancer-free, it could work again. Right?
In the years since my first diagnosis, things have changed. Although my oncologist was happy to have me discuss CMF and my feelings that if it worked once, it could work again, she didnâ€™t think it was the best route to take this time around. Since my side effects while undergoing treatment with CMF had been minimal, I was really hopeful we could go with a known element, rather than experiment with something as yet unfamiliar. Actually, I was pretty bummed out to be discussing chemo at all. Initially, it had been thought I would only have to undergo radiation therapy because my tumors were both fairly small. However, as with my last bout of breast cancer, when it is viewed on a slide everyone worries about its aggressiveness. This is one of those times when I wish I understood more about biology, although Iâ€™m pretty sure if I were able to view the slide and understand the significance, Iâ€™d be even more terror-stricken.
Itâ€™s probably a good idea to talk about this a bit as well. Although this diagnosis did not send me into the downward spiral I had always anticipated if I were to be diagnosed again â€“ the fear factor this time is often intense. Anyone who has dealt with breast cancer has heard the stories. Comments keep ringing in my ears like It came back again, and She was dead within a year, or No one could believe it had already spread to her lungs and brain. I keep trying to remind myself that these kinds of thoughts do nothing to help me get through the day â€“ but nonetheless â€“ they definitely have a way of sneaking into my head. I can be in the middle of what someone else thinks is a normal conversation, and have all sorts of dark and scary things twirling around in my mind. There is even a part of me afraid to believe in good news. I know this sounds crazy, but itâ€™s like if I somehow prepare myself for the worst way down deep inside in that place we hide from others, then if I have to deal with anything dreadful, it will be a bit easier for me to accept. I find myself walking that fine line between protecting myself emotionally and being depressed and pessimistic.
Things like future plans, hopes and events can really throw a monkey wrench into the works emotionally. I find myself being wistful about my future. Do I have one? Am I reckless to think about it, plan for it, prepare for it â€“ or am I realistic when Iâ€™m reluctant to think that far ahead? My son and his wife are expecting their first baby in December (I discover this early in my treatment) â€“ I find myself alternating between joy at the prospect of being a first time grandmother, to unabashed misery when I worry I wonâ€™t be here long enough for this baby to remember me.
Since my normal disposition is pretty upbeat and sunny, I did a little bit of research on the web and made a startling discovery. Is what I am experiencing actually a direct result of what has become known as chemobrain? Although Iâ€™ve heard the term often enough, I wasnâ€™t sure how much validity has really been given to this phenomena.
I learned that researchers at the University of Texas M. D. Anderson Cancer Center looked at cognitive function in 84 women with early-stage breast cancer who had had some type of surgery but had not started chemotherapy. They tested each woman to measure different aspects of memory, attention, and other areas of brain function. What they found was that about 35% of women with breast cancer had problems in cognitive functioning even before they received chemotherapy.
Since the researchers compared the cognitive test scores of the women in the study to the average scores of women without breast cancer, their findings are not as reliable as if theyâ€™d been able to compare the scores of the same women before and after their diagnosis. What this means is that chemotherapy may not be the main, or even the only cause of chemobrain.
I learned that other factors that may possibly affect cognitive function in women with breast cancer include:
Other factors this study did not address might also have an impact on cognitive function in women with breast cancer. Things like:
What I came away with was the knowledge that Iâ€™m not the Lone Ranger. Just as at one time women rarely talked about breast cancer, I have a feeling that many of these emotional ups and downs we experience are not widely discussed either. Death is still a taboo subject in many ways in our Western culture, so when we are dealing with our own mortality, itâ€™s often difficult to articulate to others exactly what is going on inside of us. When I am really knee deep in fear or anxiety, I often find myself wondering if anyone ever gets to the point of accepting their demise, at least while they are still in fairly good health.
I spent a lot of time last year with my boss and his wife as they went through the final stages of cancer. He died in March of 2004 and she passed in July of 2004. I distinctly remember feeling both mesmerized and horrified by the process. I somehow wanted to be able to understand what they were going through, because I knew I still have a lot of fear about death. I had to temper my desire for more understanding of how people deal with their impending death, with a respect for their privacy, dignity, and, ultimately, comfort. They certainly were not there for my education, I had just somehow hoped because I was close to both of them I would be able to gain further insight into the journey. In many ways I just came away from the experience feeling vulnerable and exhausted. I kept hoping I would not have to deal with cancer again in my lifetime â€“ unfortunately this was not to be.
When I began my chemo this time around, fear was sitting right there with me, regardless of how many times I tried to reassure myself everything would be fine. Since Iâ€™d already had chemo, the veins in my left arm were fairly shot â€“ and they didnâ€™t want to use my right arm because of all the lymph nodes Iâ€™d had removed nine years ago. So my options were either to get a port or what is known as a PICC line. Because Iâ€™m a confirmed chicken, I opted for the PICC line, hoping it would see me through the months ahead. PICC stands for a peripherally inserted central catheter, for anyone who may be wondering. The PICC is inserted into one of the large veins of the arm near the bend of the elbow. It is then pushed into the vein until the tip sits in a large vein just above the heart.
Okay, so I was told the above information on the day I went to have my PICC line â€śinstalledâ€ť â€“ but what no one told me was that our veins have no nerve endings so having a PICC line inserted is no more uncomfortable than having any IV done. If you donâ€™t mind the initial needle prick â€“ the rest is a piece of cake! Of course, since no one thought to mention this to me, I had it built up in my head as something excruciating, so I spent unnecessary time worrying and fretting about a procedure that was virtually painless. The beauty of the PICC line (or a port for that matter) is that once youâ€™ve had it inserted, you donâ€™t have to worry about being prodded, poked, and pricked every time you go for blood work or chemo.
Having a PICC line means you cannot get the area wet because this can cause infections, so I spent my first few weeks using the clear wrappers off of loaves of bread and rubber bands to waterproof the line while I was taking a shower. Thank goodness someone finally told me about Aqua GuardÂ®, which is a product made to protect wounds while showering. Itâ€™s a vast improvement over the spit baths I found myself opting for just to avoid the hassle of trying to concoct something that would work.
I was given Adriamycin for my first four rounds of chemo. This is what I used to refer to as the red stuff. The night before my first treatment I couldnâ€™t sleep a wink. I remembered this red stuff from the last time Iâ€™d had breast cancer. I had not taken it myself, but watched others who were taking it â€“ and they did not have an easy time. I did see a big improvement in the nine years since my last diagnosis â€“ namely in the anti-nausea drugs available. ZofranÂ®, which was the best available back in 1996 is still widely used, and works very well for many patients. I was really grateful for KytrilÂ®, which had not been available when I was previously going through chemo.
Adriamycin can be administered very quickly (in my case, less than 15 minutes) compared to other chemo drugs, so I didnâ€™t have to sit for hours at a time in order to receive treatment. Almost immediately after the treatment my urine would be red, which is startling no matter how many times you tell yourself itâ€™s going to happen. I think one of the most upsetting aspects is how quickly it begins. Sometimes I would have to go to the bathroom before I left the oncologistâ€™s office, and I would already be flushing red liquid down the drain. I realize this is just the remnant of whatever dye they use to color the drug, but it is a shock and further proof this stuff is already in your system.
Most people who are taking Adriamycin accompany it with Cytoxan. Since I already had that nine years ago, and there is a slight chance a second exposure could cause me to develop leukemia, I decided not to take it twice. This was one of those decisions where I felt like I was damned if I do and damned if I donâ€™t, but I had a feeling that leaving Cytoxan out of the mix would be better for me in the long run. And if there is anything breast cancer will give you, itâ€™s having to make decisions you hope you wonâ€™t regret later!
The Adriamycin would generally start making me feel puny on about the third or fourth day after treatment. Thatâ€™s another thing about some of these drugs â€“ they donâ€™t make you feel bad immediately â€“ which is what I think most of us believe. I received my chemo on Wednesdays, so I generally felt pretty lousy the following Saturday, Sunday â€“ and sometimes into Monday â€“ but nothing I couldnâ€™t handle. I was actually getting treatment every other Wednesday and still managing to work throughout all of this part of my regime. Even my weekly blood work was coming back so normal that my oncologist would comment are you sure youâ€™re on chemo? I was pretty worn out after the fourth round, and thought about asking my oncologist if I could take a week off just to sort of build up my strength, but I wanted to be finished with chemo, so I didnâ€™t say anything.
My second leg of treatment involved the drug called TaxotereÂ®. The active ingredient in this mixture comes from the needles of the European Yew tree.
Looks harmless enough, huh? And actually, because I know it has saved lives, I wonâ€™t â€śdissâ€ť the tree or its needles. Just let me say this â€“ I began treatment thinking I knew what chemo is all about â€“ but I found out I really didnâ€™t have a clue. Before I scare everyone who may be on the verge of beginning treatment, I need to tell you that once we understood the Yew and I were not going to get along all that well, my doctor and I were able to figure out ways to make the treatment bearable. So this is just a cautionary tale!
I had my first round of TaxotereÂ® on Wednesday as usual. The following day I noticed my tongue was white and tingling â€“ but I didnâ€™t think a whole lot of it. I felt fine other than that. On Saturday and Sunday I felt a bit puny, but nothing I couldnâ€™t handle. In fact, I went to breakfast on Sunday with my in-laws and still felt pretty good. I remember thinking this wasnâ€™t going to be as bad as the Adriamycin. I couldnâ€™t have been more wrong. I was still working full time at this point and went to the office on Monday like I had the flu. My cheeks felt flushed and my tongue was now bothering me quite a bit. I had even developed a small ulcer on the inside of my lip, which had never happened to me before during treatments, although I knew they were possible. On Tuesday I went for my weekly blood tests, and had hardly gotten back to my office before the call from my doctor came informing me my white blood cells were nearly non-existent.
They warned me not to eat any fruit or vegetable I couldnâ€™t peel (I had just eaten nearly a whole bag of Bing cherries), to stay away from anyone who was sick, and to get myself back to the office as soon as possible so I could begin getting shots of NeupogenÂ® in order to help my white blood cells get back to normal. Lastly, they told me if I began running a temperature of 100.5Â° or higher, I would have to begin taking an antibiotic. Of course, when I got home and took my temperature, it was already to 101Â°.
I had the shot on Tuesday, and was given a prescription for an antibiotic and NeupogenÂ° shots I could self-administer. Learning how to give myself shots when I was feeling so lousy is a whole other story, but suffice it to say I really hate needles, so this was just insult added to injury. From that Tuesday for the nearly the next two weeks I felt just awful, like I had the worst case of the achy flu imaginable. My toenails turned purple and throbbed, and my fingernails began to change color and pulsate painfully. I had fever sores on my lips, and my skin on my hands and feet was peeling off. It gave me a whole new respect for how badly chemo can trounce someone, and also made me feel like I wanted to quit. I even began speaking this possibility to my co-workers and family.
When I shared this feeling with my oncologist, she said there were ways we could help to prevent the side effects I had experienced â€“ perhaps the most crucial being to cut the dose by 25%. Since I felt that cutting the dose was better than no dose at all, I agreed to this treatment. We also changed my schedule so I receive treatment every three weeks instead of every two. Additionally, I get a shot of NeulastaÂ® once and it lasts three weeks, which is a vast improvement for me!
This is not to say I donâ€™t know Iâ€™m having chemo, because I still feel when it â€śhitsâ€ť â€“ but by talking to my oncologist and being a bit more proactive, weâ€™ve been able to create something that I can endure.
With my oncologistâ€™s blessing, I went to a local Chinese herbalist and have been drinking a tea which also helps to keep the side effects at bay. The combination of everything we have tweaked seems to be doing the trick. As I write this, I am only a few days away from my final treatment, and unlike previous times, I am not feeling any dread or fear. I donâ€™t know if this is because my psyche knows I only have to get through this one, and itâ€™s over â€“ or if itâ€™s because Iâ€™ve been able to get the side effects to calm down. Regardless, I will be so relieved to have this part of my treatment behind me.
When I am feeling at my lowest, I try to remember all of the women who had to endure chemotherapy for as long as two years at a time, when there were no drugs like ZofranÂ® or KytrilÂ® to ease their nausea. It was not all that long ago, and when I think about what they went through, and how they paved the way for those of us going through treatment today, I feel such gratitude. I also wonder how treatments will advance in the next nine or ten years (while praying I will still be here and healthy â€“ and not undergoing ANY chemo!) There is even a part of me that allows myself to hope that within that time period someone will find the cure(s) for breast cancer!
Originally published in 2005.
Be a Survivor – Your Guide to Breast Cancer Treatment, by Vladimir Lange, MD, 3rd edition. A unique new approach to helping women fight the biggest battle of their lives.