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For background, please read previous portions of my breast cancer journal: Part I Part II Part III Day 116 - January 14, 2010 - Thursday I knew my hair would fall out. I expected that. I had read all the literature that came with my breast cancer diagnosis. But somehow, I hadn't realized just what that entailed. What I noticed, just prior to significant amounts of hair loss, was a tingling sensation on my scalp and heightened sensitivity to touch. My scalp hurt. But it wasn't just the hair on my head that was affected. My eyelashes and eyebrows are thinning at an alarming rate, and the small amount of hair I had left on top of my head is quickly disappearing. With two more chemo treatments to go before radiation begins, I can expect complete hair loss. My eyes tear constantly as the eyelashes fall. I see my eyelashes thinning daily and it changes the way I look. And so, for the first time in my life, I will try to manipulate an eyebrow pencil and I will have to purchase eyelashes. In two weeks, I'm supposed to fly to Virginia to visit my son. How will I walk through the airport with my eyes watering so profusely? Day 121 - January 19, 2010 - Tuesday I sit in my 5th chemo treatment as I write this. Before chemo I met with my oncologist. Something unusual is happening to me, and though I waited until today to bring it up, it started just prior to my last chemo treatment. Having suffered from constipation my whole life, I'm used to going weeks without elimination. Usually, by the time it happens, I feel so relieved to finally be able to go. Not anymore. The pain is so excruciating, tears well up in my eyes. It feels like shards of glass are scraping my rectum and ripping it to shreds. The toilet paper is filled with blood. Dr. Johnson suggested taking stool softeners. I already take two a day. She said to double it. The nurse, Deb, also suggested taking Benefiber. I will try both. My eyelashes have become so scanty I can't even wear mascara anymore. My eyebrows are so thin, I've begun using eyebrow pencil. It bothers me more to lose my eyelashes than it does to lose my hair. I had to purchase a compression sleeve today, because I will be flying to Virginia to visit my son and his family who moved there recently from San Diego. The compression sleeve will help prevent my arm from getting lymphedema, a problem that results for many patients who have had lumpectomies. Air pressure has become my enemy. The woman who sold the compression sleeve to me suggested I wear it for any strenuous activity, too, because she had heard of lumpectomy patients who had gotten lymphedema after exercising. I have to say goodbye to jacuzzis too. Day 134 - February 1, 2010 - Monday Yesterday I awoke with lymphedema in my right hand. I don't think it was caused by the flight. I wore my compression sleeve when I flew to Virginia to spend time with my son and his family. Ever since my surgery, my hand has felt as if a vein inside it, running all the way up to my shoulder, has been shortened and tightened. Bending my hand has been painful. The night before yesterday was more painful than usual and I rubbed it to relieve myself of the pain. The following morning (yesterday), I awoke with lymphedema. Lymphedema is one of the side effects of lymph node removal. Massaging my hand may have caused the lymphedema, because massage may or may not contribute to the condition, depending upon which web site you read. I guess I should be grateful the swelling doesn't run all the way up my arm. Day 142 - February 9, 2010 - Tuesday The swelling in my hand went down. I now know not to massage it or to get a massage on my right arm. The swelling could have been permanent. I've seen women with horrible cases of lymphedema where their arms and hands are so swollen they can barely fit them into sleeves. My hand is still painful, though, and I wonder if the pain will ever go away. One of my new symptom has been bothering me a lot lately - excessive tearing. When I walked through the airport, I could barely see where I was going. I think it's because as my eyelashes fall away, I have nothing to prevent irritants from entering my eyes. It sometimes becomes so excessive my entire face is drenched with tears. I'm still in Virginia due to a snow storm and flight cancellations. I was supposed to have chemo today, but I had to push it to next Tuesday. It puts everything back a week, but being here gives me more time to spend with my son and my grandchildren while his wife (their mother) spends time building a business in Illinois, so for that I'm grateful. Day 144 - February 11, 2010 - Thursday I should have had a chemo treatment this past Tuesday. Today is the best I've felt in a long time. I feel almost normal. I'm still in Virginia visiting my son, and except for my bald head and my loss of eyelashes and eyebrows, nobody would suspect what these past several months have been like for me. My eyes have stopped tearing. Hopefully that annoying symptom won't return. My oncologist is booked for Tuesday, so my chemo treatment will be Monday instead. I'm not looking forward to the exhaustion. Being here in Virginia has been a really nice break. Day 151 - February 18, 2010 - Thursday Monday, February 15th, marked the last day of my "bad" chemo treatments. Today I am sluggishly exhausted. My conversation with my oncologist was filled with new insight into this terrible disease. Constipation has always been a problem for me, but because of the chemo drugs and the nausea medicine, the problem has exacerbated. Even though I have introduced more fiber into my diet and have followed Dr. Johnson's advice about relieving the constipation, I was frightened by the amount of blood I found in the toilet bowl last Saturday. She nodded, knowing that I was just experiencing another symptom that goes along with the cancer drugs. The pain has diminished though, and for that I am grateful. Dr. Johnson's strategy for my continued care has changed. Instead of temporarily holding off on the chemo during radiation, I will continue the chemo through radiation. Dr. Johnson said that the radiation will be more effective if I get the chemo and radiation at the same time. She also warned me that the radiation will make me tired. When am I not tired lately? The good news is that after about a month or so, I should see signs of new hair growth. I should get back my eyelashes, and I should feel more energetic a couple of months after the radiation is complete. So hard to believe that a year ago, I knew nothing of what my life would hold for me now. Day 158 - February 25, 2010 - Thursday My taste buds are almost working properly. For several days after chemotherapy, nothing tastes right and my tongue feels burnt. Today things taste almost as they should. I've had a bout with asthma these past couple of days, so the energy I thought I would be feeling again escapes me right now. And for the first time probably since I was an infant, I am napping in the afternoon. While normally I would berate myself for interrupting all of my tasks, I can now take into account that I do, after all, have cancer, and when you combine it with asthma, maybe a nap now and then is OK. Forgiving myself for not DOING what I feel I should be doing is coming more easily to me. I just cannot do everything I want to do and I have to remind myself that not only am I human, I am also sick. I hate to think of myself that way though. My sister told me today that as she was reading my facebook messages, she realized that nobody would ever know how sick I am because what I'm writing seems so upbeat. For that I am grateful. The appearance of good health is a positive affirmation of what is to come. Day 165 - March 4, 2010 - Thursday Today was a little disappointing. I expected that when I saw the radiation oncologist, my radiation schedule would be set and I could begin receiving radiation. However, because of where my surgery took place (at the base of my right breast close to the breast bone where the cancer was {yes, I'm positively affirming that it's gone} located), special precautions have to take place first. Next week, on the day after I receive the new chemotherapy treatment, which will consist of Herceptin only (technically not a chemotherapy drug), I will be getting a CT (computed tomography) scan so that the radiation oncologist can mark the spots that outline where the radiation will go. The markers will stay in place for several treatments until the radiation oncologist is certain that the markings are correct. The entire breast will be radiated, and the markers tell the radiologist where the cushions and molds should be placed so that every time I go in, the markers, which will eventually be tattooed on my skin, will remain the same. Once radiation begins, I can expect the number of days I will be radiated to be longer than the originally anticipated 30 days. My radiation will go for 33 days. I was sent home with a folder filled with information about what I can expect during radiation. Fatigue is one of the side effects, but I've been dealing with fatigue since I began chemotherapy. Another side effect, a cumulative side effect, is a burning sensation that may result in blisters. The doctor warned me not to go in the sun for another year AFTER radiation is completed. According to Dr. Sapiente, 95% of the sun's rays filters through clothes, so even though my breast would be completely covered with clothing, I am not protected. (For more on protective clothing, read How to Protect Your Skin with More Than Sunscreen) Day 200 - April 9, 2010 - Friday Wednesday marked the midway point of my radiation. On the day of my CT scan, I was marked with four tattoos, each the size of a pen point. The reason I was marked so early in the process was because the marks had to stay in place for two weeks until my schedule was set for radiation. For ten of those days I visited my son and his family again in Virginia, so the doctor recommended tattooing in case the marks washed off. Unfortunately, the markings, once radiation began, proved to be off their mark and I had to be tattooed once again. I now have eight blue pen-point sized tattoos to mark the spots where the radiation is delivered each day. In addition to receiving radiation every day Monday through Friday, I will meet with the radiology oncologist once a week (usually Wednesday). During radiation, I lie on top of a mold that was created especially for me. The mold is placed on a table that sits below the radiation machine. The radiation machine rotates around me, radiating first the far right side of my right breast under my arm (which is raised above my head) and then again at about a 45 degree angle (from my perspective) above my body to my left (with my arm still raised). The reason the machine has to deliver radiation at an angle is because in the initial phase of radiation, protons are being radiated into my body. If the radiation faced directly into the place where the tumor originally resided, the organs and tissue directly beneath it (my lungs especially - due to a history of asthma) would be severely compromised. The simulation took about 45 minutes; the radiation itself takes only a few minutes after the radiologist technicians line me up using my tattoos to guide them. Every morning and every night I apply a radiation gel to the entire area that gets radiated. That area includes a zone midway between my breasts around to under my arm close to my back and from about two inches below my breast to about an inch below my collar bone. So far I am unaffected by the radiation, except for feeling somewhat tired. Unlike the extreme exhaustion I felt during the initial six chemotherapy treatments, this kind of tired requires me to nap occasionally, but when I awaken I feel refreshed. During the "bad" phase of chemotherapy I was completely exhausted always. Radiation treatments will continue throughout the month of April. In May I will receive what is termed as Electron Boost Treatments which will continue until May 12 when I will have my Exit Exam. At that point electrons, rather than protons, will be radiated into my skin, and because their reach is minimal, the machine will point directly at my tumor, head on. I have already received one Herceptin infusion during radiation. I will receive another infusion of Herceptin on April 20th. After radiation is over, I will continue continue receiving Herceptin through next October. Day 220 - April 29, 2010 - Thursday The effects of the radiation are beginning to bother me. My skin is burnt and the nipple on my right breast is extremely sensitive. My clothes hurt when I move. I have a rash on my chest and even the area under my armpit that is getting radiated is painful. Though I still have no feeling in certain areas on the back of my arm and under my arm (due to lymph node removal), the areas where I can feel are painful. Ever since the surgery, I've had a pain on my right shoulder blade too. I hope that disappears in time. I am using the radiation gel the radiology oncologist suggested. I'm sure I would be in much worse shape if I hadn't been using the gel day and night. But today was only my 27th treatment. With six more treatments to go, I'm wondering how much more radiation my skin can handle. The good news is that beginning in May, my boosts begin. Boosts radiate only the portion of the breast where the tumor was actually located. So instead of the entire breast being radiated, only the area where the surgery was performed will be given radiation treatments. Another positive effect of the boost radiation is that where my breast is going to be radiated will be entirely free of pain - I have no feeling whatsoever in that area. People have been asking me what type of breast cancer I have. Up until now all I knew was that I had the Her-2/Neu Positive type, so I asked Dr. Sapiente what type I had - invasive ductal carcinoma-Stage II. Cancer has five stages from Stage 0 through Stage 4. Day 234 - May 13, 2010 - Thursday I didn't realize until May 1st, when the boost portion of my radiation began (I had to have another simulation prior to the actual boost radiation), that the oncologist had expanded my treatments to 36 instead of 33. I hadn't counted the days, because we skip weekends. So May 11th was my last radiation/chemo combination treatment. Yesterday, May 12th, was the last day of my radiation treatments. During the boost phase of the radiation, the radiologist technicians attach a cone to the radiation machine. At the bottom of the cone, they insert a bolus, which was created for me according to the specifications they received from the simulation. The machine pulls in very close to my breast and, to get the proper alignment, technicians draw (with a marker) an area around the boost spot to match the shape configured in the bolus. When showering removes portions of the drawn-on area, the technicians re-draw the area. Except for my chronic insomnia, when I am up until 3 or 4 in the morning 3 to 4 days a week, and my ever-present constipation, I manage to cope. The nasty side effects of the original chemo drugs no longer affect me. I feel blessed that the area where the boost was delivered is numb. Dr. Sapiente, my radiation oncologist, and his nurses warned me that the radiation effects will linger beyond the end of radiation. Fortunately I have no feeling in the area where the boost was delivered. If the skin becomes cracked or infected I will feel no pain. The fact that I can't feel anything presents another problem, though, because I have to watch for infections. I won't suspect any problems unless I look at the area that was radiated. Already my skin is peeling from the proton form of radiation. Dr. Sapiente told me to discontinue using the radiation gel and start using a powerful moisturizer like Eucerin now that radiation is over. I am using their Fragrance-Free "Dry Skin Therapy Plus Intensive Repair Enriched Lotion." I mentioned to Dr. Sapiente how uncomfortable the lumpectomy area is. What was once a 4 cm wide tumor is now scar tissue of about the same size. Because it sits below my right breast and because it feels like a boulder pushing against my chest wall, I am always uncomfortable and always aware of its presence. I was hoping he would tell me when that feeling would disappear. Sadly, I found out it wouldn't. I can't lean forward or lie on my back without feeling the pressure of the scar tissue. It feels as if somebody has placed a heavy rock on my chest and wrapped a tight bandage around it. It's annoying. I hope I'll get used to it. On a positive note, my hair has begun to grow. It's about a quarter of an inch long right now. I sill don't know if it will come in curly or straight, but I can see that it is the same color it always was, mostly white with black. I once referred to my hair color as skunk. I no longer refer to it that way. I have a new-found respect for hair of any color. My Herceptin infusions will continue every three weeks through October, 2010. I will have to have another mammogram as soon as my breast heals from the radiation. Day 235 - May 14, 2010 - Friday Part IV of my journey is complete. I reflect on last May when my mammogram was clear. I didn't notice the lump until September, 2009. I couldn't have waited another year for a new mammogram. During this process I've met lots of wonderful people, from the doctors and nurses to technicians and schedulers. I've also spoken to many patients. What's interesting about radiation is that a lot of the women I met are receiving radiation because of a suspected cancerous tumor. Not everybody who receives radiation has cancer, though many of them are considered to be at Stage 0. According to breastcancer.org, "In stage 0, there is no evidence of cancer cells or non-cancerous abnormal cells breaking out of the part of the breast in which they started, or of getting through to or invading neighboring normal tissue." So those at stage 0 get radiation to prevent the cells from becoming cancerous. My breast cancer journey continues. To read previous articles about my experience with breast cancer, please click on the links at the beginning of this article. I will continue to write about my recovery from beast cancer beginning with Part V that will continue the saga starting with another MUGA scan I am scheduled to receive on May 25, 2010 (to find out what a MUGA scan is, read Part I). The MUGA scan will determine whether or not my heart has been affected by the chemotherapy and radiation. For more information about breast cancer, please visit breastcancer.org, the National Cancer Institute, or the web site of the hospital where I am currently receiving treatment, the Mills Breast Cancer Institute. |
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