One treatment down, seven to go. It’s hard to say how it went yet. I slept most of the afternoon, but I think that was from the Ativan or sedative that I got as some of the premeds. Apparently people are anxious enough that the regular nausea medicines don’t work. It made me pretty sleepy, and I woke up hung over. At this point, I can’t say if it was from the Ativan or the other drugs. At least I ate reasonably well. My stomach is upset, but I am not nauseous. If it doesn’t get any worse than this, I will be fine. Only I am pretty sure it is going to get worse than this. In fact, this should be nothing.
I received the list of wig shops. I would like one or two wigs even if I don’t imagine myself wearing them. They are hot, and it will be the summer. But just the same I think I would like to have one. It seems like quite a process to buy it. The shops recommend or require appointments. I don’t think I care enough to take that much time figuring it out.
I still sometimes feel vain for choosing to have reconstruction. I have heard about some local women who did not. Although I must say, I think it was the right choice for me. There may be some additional pain at first, but I think, for me, it is preferable to a prosthesis. And I would get frustrated with clothes and bathing suits not fitting. I even rather like it. Even though it certainly doesn’t feel like a breast, I think it looks pretty good. And this is just the expander.
I chose to have the Oncotype testing done. Even thought it is not going to change anything. The Oncotype looks at 16 different genes from within a particular tumor and comes up with a score. That score is on a scale of one to 100. With one being the least aggressive and 100 being the most. Mine was nine. Very slow growing. In fact so slow growing that chemo is not going to help me much if at all. Yet I should still do it. The test is too new for me be able to risk a distant metastasis, especially at my age, by not going through the standard of care which is chemo. The good news is survival at ten years with an Oncotype of nine is 93%.
It is posted chemo day number one, treatment number one. So far do good. Feel pretty normal. Eating, drinking. Occasional queasiness and fatigue but even that seems pretty tolerable. I was able to get my daughter up, dressed and to school in time for her swim lesson, and I swam myself. 2600 yards, a mile and a half. I had more energy but felt like I shouldn’t really push hard. Swimming felt good. Tomorrow may be worse or so I am told. We shall see.
It has been a week since my first chemo treatment. I am finally feeling almost back to myself. I have moments of feeling completely normal but then other moments of yuck. I have been able to exercise. I swam today. Was a bit fatigued but that may have been more from the walk to the pool with my three-year-old. Friday, or post treatment day number two was the worst, but then it was a very slow progression. Saturday, post-treatment day number three, was better but still felt nauseous. By Saturday evening, I was feeling better and had high hopes for Sunday. Unfortunately Sunday I had a headache and nausea persisted, which then seemed to drag on into Monday. I think I have been feeling pressure to be “breezing through” this. Enough people have said: healthy young women can “breeze” through this. I, of course, want to consider myself in that category. I don’t think by the way I feel that it is a breeze. It is going to suck. And I am going to feel worse. It is going to take a week to feel even remotely like myself. I already don’t want to have to do it again, and the first treatment is supposed to be not that bad.
I finally feel well. Good energy today. Pilates, biking and a walk. I do have a bit of a cold. My daughter had a runny nose and a cough for a day. I would not have thought about it at all except now that I am symptomatic; I wonder if it is a sign of my reduced immunity.
I saw my new oncologist yesterday. I liked her. But I was underwhelmed by the office. I had decided to be seen in town closer to where I live. The hospital is more or less a competitor of the hospital where I have worked for ten years. Initially, it seemed to make sense. A relief in the fact that I could be treated closer to home but not have to deal with the privacy issues of being treated at my own workplace. But I felt like a traitor. I was very comfortable with the office where I got my first treatment. After my appointment today, I felt very uneasy about continuing treatment closer to home. So I decided to listen to my intuition and go back to the first office. It means that I will have to wait a day. The only appointment I could get was on Thursday instead of Wednesday or even Tuesday. It upset me for a while that I could not get the day I wanted. I then realized I was wasting too much emotional capital thinking about what day of the week I want. I am happier going back and in the end the day if the week is not going to matter much. I cannot get myself worked up about whether it is going to be a Wednesday or a Thursday.
Gearing up for my next treatment. I feel completely well except for the cold I have had for the last few days. It is slowly getting better. Very much hope it is better by Thursday when I get my next treatment. My hair seems to be coming out. Today is the first day I have noticed more hair in the shower. A few hairs seem to be left behind where ever I go. I bought I few new hats and bandanas which actually arrived today, so I guess that was good timing. It is not an alarming amount. And of course, I am prepared for it, but I was hoping maybe I could keep my hair for another week. That is looking doubtful. My plan is to shave it off this weekend, but I want to see a least one large clump come out before I take it all off. I told my daughter that I was going to lose my hair. She didn’t like it. I had not really thought about what losing my hair was going to mean for her. She will get used to it, as I will get used to it, but she could be pretty upset at first and I think that will undoubtedly be the worst part.
I shaved my head today. I also had my second treatment and a birthday. Not how I would have planned my birthday, but I actually had a nice day. My friends and family brought me many lovely, thoughtful gifts. We had delicious homemade pizza for dinner. The treatment was fine. I napped most of the afternoon. And then I shaved my head. My hair had started coming out. I lost a pretty big clump a few days ago. That was quite upsetting. Even though I knew it was going to happen, it still took my breath away. I have been depressed about it since. I was afraid my daughter was going to freak out and at a time when I was already emotional I thought it was going to be bad for both of us. But the shaving party was fun!. Some old friends came over. One who has had breast cancer recur twice for a total of three rounds of chemo. She has shaved her head three times. We ask my daughter what she wanted to do. Did she want to watch mommy’s haircut? Initially, she said she did not, she said she wanted to go to bed, but after fueling with a birthday cupcake, she changed her mind. She watched most of it and seemed to be fine. I think she still might be a little upset tomorrow when she sees me and remembers, but I think it will be okay. So glad she stayed up to watch. And the whole thing was fine for me. It is much better than shedding on everything. Getting hair in your food. Having a handful of hair come out every time I run my fingers through it. It still do not have a wig. Not sure the wig is the answer for me. I got a few more hats to add to the few I already owned. I found five or six scarves I have had since high school and college which should all work as head scarves. I feel like I am in good shape as far as that goes. And I didn’t feel particularly yucky. I had a little in the early evening which improved after eating and did not recur. All in all a good birthday. I will say that I am looking forward to an even better one next year. 🙂
I am almost ten days out from my last treatment. Dose number two. I feel OK, but I am not motivated to do anything. I am tired because I did not sleep very well last night. Primarily because my mouth gets so dry, it wakes me up. I then drink some water, but it still is cracked or at least feels cracked, and sore. My throat is sore. I don’t have any mouth sores that I am aware of, but it is depressing me to think the dry mouth alone is going to keep me up at night. My energy is ok. I know I should exercise, but I am so unmotivated. I have been exercising a lot in the last week so I could take the day off. I am usually an exercise addict. And, exercise helps everything. Improves my mood, helps me sleep, ensures that I can eat pretty much what I want, keeps my bowels moving which can be a major issue when I am taking all the nausea meds. I also have to believe that staying as strong as I can help me survive this. Maybe make it easier. But I think today I just don’t feel like it. And I want to listen to myself on that front as well. I am sure it doesn’t help that it has been raining for a week straight with more on the way. Maybe I should start with a nap.
I have my third treatment tomorrow. I do feel well and strong right now. I biked 20 miles today and felt great. However, I have been told that one and even two are not that bad; it’s three and four that are the tough ones. I did struggle a bit with this treatment. Even when I was feeling pretty well, the dry mouth was infuriating, and I let it get me down. I am not sure if I am just used to it now or if it is a little better, but the dry mouth is not bothering me as much. What is troubling me now is hot flashes. I haven’t had any hot flashes yet, but it is going to happen. I think it is as inevitable as hair loss. I think hot flashes are really what is going to make me feel different, old. I think it is what is going to make this whole crappy situation worse. As if I need to feel even worse. It is already bad enough, and it is going to get worse! I guess time will tell. I keep thinking, maybe it won’t happen to me. Yeah right.
I am now three days out from my third treatment. Seems to be going more like the 2nd then the first, which is weirdly easier. Symptoms seem less, but it remains to be seen how long it will last. I feel pretty good right now. I just spent 1 hour on the bike trainer. Not going hard but steady for the whole time. My taste buds are a bit off, but I don’t have that metallic taste in my mouth. Most foods taste almost normal but maybe just not as good. Still no hot flashes and that I am thankful for. Even though I am in the midst of what is considered to be a difficult chemo regimen, even though I am poisoning myself every two weeks, I feel healthier than I did a year ago. I must have known something was going on then, but obviously did not know what. I know that what I am doing is making me better even if it has to make me feel worse first. I am killing cancer it is not killing me.
It has been over a week. And I still feel kind of crappy. I am much better than I was, but I can still feel the effects. Little nausea. I get winded and dizzy by doing the most basic tasks. I have been exercising. At least for the last two days which does feel pretty good but then, of course, I am very tired.
I guess I am starting to feel better, but I have been pretty miserable for the last one or two days. My last cycle of AC was last week. I am almost a week out. Symptoms progressed more slowly. I didn’t feel that well the day of treatment, so I guess it is no surprise. Yesterday I spent the day in bed. Mostly because of a headache. I am out of bed today, thankfully headache is better but just have no motivation. The thought of getting dressed is so tiresome; I just stay in my PJs. I think I feel well enough to exercise, and that always helps my spirits if nothing else, but I am so unmotivated. I may not do it. It feels like this is going to go on forever. I look at other people doing normal things and feel like I will never be among them. Everyone has told me that the taxol, the next drug, will be easier. I hope I have not set myself up for disappointment. I am trying not to expect too much, but I want to feel normal and I don’t think that is going to be the case. My implant is also uncomfortable. I wonder if I strained the muscle. At least that is what it feels like. But right now it is just one more thing to deal with. I have enough already, thank you very much.
Today what is bothering me the most is my mouth. It is not exactly dry, but pasty. It seems that my saliva is thicker. I have eaten, been drinking, tried chewing gum, but nothing seems to help much. I am sometimes overwhelmed by the thought that I am pouring poison into my vein every two weeks. And not surprisingly, it has some unpleasant side effects. I am prepared for nausea and fatigue. I am accustomed to the general yuckiness that goes with it. It is the little things like this sensation in my mouth that is driving me crazy. I guess I should be thankful. I don’t have the metallic taste that many people report. And I have not had any food aversions, except coffee. Coffee tastes terrible, which all things considered, is certainly not that bad. I do miss it, though. It is one more reminder that my life is not normal.
I have realized a couple of things. One, the reason my implant/expander is uncomfortable is because it had shifted position. There is a firm circular area on it which is a magnet, so the plastics people can find the valve when they want to put more fluid in. I have not been filled since the day of surgery, so it has never been used. Although I will likely get filled before I have radiation as that can cause some shrinkage. This valve used to be positioned superiorly, but it is now on the inferior surface. The entire shape of my fake breast has changed. But now that I know why I feel much better about it. I think it is also a little less sore today and, of course, that also helps. I was starting to panic that I was developing chronic pain, and it was always going to be sore. I do find it a bit strange that it was able to shift position without me knowing it. It would seem that of course I should be able to feel it move, but I didn’t. Two, the reason I am so fatigued and dizzy at times is probably due to anemia. My white blood cell counts and my platelets have recovered and been in a normal range, but I am steadily losing red blood cells. I can hear the blood rushing in my ears. And it makes sense that that is why I am dizzy. I think being able to differentiate dizziness and fatigue is helpful. I get dizzy when I stand up or start to do things, like getting dressed or preparing food. Which is disconcerting to say the least but it is not that I am so fatigued I cannot accomplish the task. This is also a very helpful realization. I may continue to be anemic until this is over but knowing why certain symptoms occur is helpful.
Everywhere I go people around me is uncomfortable, but they show it in different ways. Even if my head is covered, which at this point it usually is, it is pretty obvious that I don’t have hair. Some people are extremely friendly with big smiles, friendly greetings, opening doors, etc. Some people look down and try to avoid me. I don’t mind not having hair. Especially at this point, I am pretty much used to it. I say pretty much because now and then I will catch a glimpse of myself in the mirror and think “wow you look like a cancer patient”. So even I know how startling it is. I would like just to be bald. Not wear a hat or scarf. But the people around me are so uncomfortable with it that I prefer to cover my head. There is also the practical part that is sun protection. It bothers me that I feel obligated to change my behavior so the people around me, essentially strangers, will be more comfortable. But I don’t like feeling like a freak. And I feel like a freak when I do not have my head covered.
I had my first dose of Taxol almost a week ago. There was so much expectation since I had heard from every angle that it is easier. Unfortunately for me, I contracted an infectious gastroenteritis from my daughter, which was in full force the evening after treatment, but not really until then. I had not felt well the day before treatment and finally decided to take my temperature, which was 101.2. But the day of treatment I felt pretty well. The fever had resolved. I had thought that the GI symptoms may still be coming, and sure enough they did. A miserable 24 hours. Afterward my belly was just a little unsettled, but I was so fatigued. I did not have enough energy to get myself out of bed and down the stairs even if it was just to rest again on the couch. It is now unclear what symptoms were from gastroenteritis and what are from chemo. I have had a lot of aching for the last few days. This is getting better. Aching is one of the taxol symptoms. I did still have what I would call the chemo yuckiness at least for the first few days. Thankfully that has resolved. I do feel pretty well now and would agree that so far the taxol is easier. But it is not without its issues, and it is still early. I am disappointed by how fatigued I am. I went swimming today, and I am just so slow. People in the pool were beating me which was very frustrating. People who would not be able to beat me if I were not a cancer patient. I know I have to let that go. Otherwise, swimming was good. And even though I am slow I did think that even that seemed to improve the longer I did it. Very encouraging for the weeks to come. It is frustrating and depressing to think what chemo has done to my body, my fitness, my life, but then I remember it is already more than halfway done. I do think the worst is behind me, and I should be getting my life back soon.
Taxol is easier. I only have symptoms for three to four days. I felt almost normal before my last dose, but the days that I have symptoms are almost unbearable. I only have one more dose, and I am not sure I can take it. My legs are so sore and achy. Which doesn’t sound that bad, but it is a discomfort that I have not experienced with anything else. It feels like something completely unnatural is happening. And maybe it is. This last time my head felt funny. I had been dizzy, which I was attributing to anemia, but is a side effect of taxol. It is similar to vertigo and would occur when I moved my head. My head seems better today but for the last few days even small movements would make me a little bit dizzy. It made me feel fuzzy. I was not very comfortable driving. Again it is this unnatural feeling that something is happening to me that really shouldn’t be. I feel like there is some reaction in my brain that is making me angry and depressed. Of course, any chemotherapy patient is entitled to feel angry and depressed but somehow this seems like a side effect. It gets better when the other symptoms get better. But I don’t like that feeling, and it is what is making consider whether I am going to get my last dose. A month or so ago my oncologist said that the longer chemotherapy goes on, the less benefit you get from it. In other words, the first few doses are the most beneficial but the benefit decreases as you get to the last few doses. Since I may not have benefitted from chemotherapy in the first place, (due to my Oncotype score being so low) it is really difficult to continue. Also, I do have some numbness and tingling in my hands and feet. It is not that bad. I think I can function without any limitation. But it was enough that my oncologist lowered the dose of taxol at my last treatment. She also said that if the numbness was worse I would not get the last dose. I feel like I have an out. At this point, I feel like at least for me, with my particular circumstances, I am no longer benefitting from chemo, and it is only causing problems. It is only destroying healthy parts of my body and potentially causing irreversible damage. I feel like it is time to be on the mend. Start feeling better. Be healthy again. And I have an out…I can always say the neuropathy is worse.
I couldn’t do it. Even though I wanted to be able to say, I am not getting the last dose. I wanted to say I have had enough; this is no longer helping me. I couldn’t do it. I kept thinking I would regret it. That somehow I would start worrying that I was going to recur because I did not get the last treatment. Now I know I have done everything. BUT, just when I was starting to relax, just when I began thinking of how I can celebrate the end of chemotherapy, my implant started to hurt. It had bothered me for a few days before. It had shifted position, and the muscle felt sore for a few days. So at first I did not think that much about it. Then I started feeling lousy, but I had just had chemo so it certainly could be that. Then I had a fever. My implant continued to hurt, and it seemed to be getting worse. I kept looking at it but not seeing what should have been obvious, that the implant was red and incredibly swollen. I thought I am almost five months out from surgery; this cannot be an infection. Turns out, I was wrong. I have an infection in the implant/expander and need a week of IV antibiotics. I was started on oral antibiotics that have already helped. I feel better, and my chest is not quite as sore. I have received two doses so far and will get at least another three.
I just finished my week of IV antibiotics. While I was getting my IV placed for the last dose. The radiation oncologist called. She wants to set up my mapping appointment for radiation. She suggested next Tuesday of Wednesday. I don’t want either. I was told that I will get a month off between chemo and radiation. Since I have been dealing with this infection, my time off has not started yet. I DO NOT want to have another appointment next week. I had appointments every day this past week. This is my summer, what’s left of it at least. Back off and give me my time off. I can go for my mapping appointment after Labor day.