Sunday. 1/14. Even though my first Taxol infusion went smoothly with way fewer side effects than the dose dense A/C infusions, the familiar anticipatory anxiety sets in. Slow, deep breaths. My muscles are sore and tight and my body is a bit achy all over. Still, this is nothing compared to those last four infusions; I am no longer going in for the voluntary flu I remind myself. I’ve got this. I think.
Doctor’s Orders. People keep telling me that I look good, but I sure don’t feel good. In reality, I tend only to go out when I feel better, so most people only see me on ‘good’ days, not the bad ones. Plus, I am excited to see my food fairies, so I perk up when they come to visit. One thing I think is helpful in how well I am doing is that I really do follow doctor’s orders. They have strong science based / proven reasons why they give certain orders and it is generally because they are found to be effective. For example, they say to drink lots of water, so I do. And, I mean a LOT of water. AT least one liter a day, usually more. The research indicates this helps to flush the toxins out of your system quicker. It is also recommended to be as active as possible. This part is not always easy, even for an active person like me. I walk Bear most days, so that gets me out into the fresh (usually cold and rainy – ugh) air with a little exercise. I try going for longer walks on some days when, and those usually prove to be too much, so I have to reign those ‘extras’. When I do mild exercises (for me) like walking for 2.5 miles, it tires me out like an intense gym workout.
Image: Tracking my water intake
Tuesday. 1/16. Second round of Taxol. This is my first infusion day without seeing the doctor. Once you move into ‘chemo light’ (weekly Taxol chemo is given at a much lighter dose), you only see the doctor every few two to three weeks, depending on how well you are doing. Just my luck that on the first day of not having to visit the doctor, which I ASSume will be a bit quicker, I get the slowest nurse in the building. She kept disappearing for long periods, and other nurses would take over her work.
Teamwork. The nurses here are GREAT at working together, and they have to be. The protocol before giving any chemo drug is to have a second nurse double check to make sure the right drug in the right dose is given to the right patient. Have you seen any of the military movies where the soldier only gives name, rank and number? Every time I go into chemo, I have to repeat my name and date of birth multiple times, reminding me of these movies. When I check into the front desk at the infusion room and they put my wrist band on – name and date of birth. When I first see my nurse – name and date of birth. When my nurse and the second nurse are getting ready to administer chemo – name and date of birth. I joke with them that anytime someone asks my name in the future, I am going to be conditioned to give my full name and date of birth. This teamwork protocol is a good system to decrease potential errors. Other times they work together is if the ‘beeper’ is going off indicating a drug is finished, another nurse may come over and hit a few buttons on the machine silencing it until your nurse gets there. It is generally great teamwork. Today, I could see the frustration on the other nurses’ faces, especially the one in the next pod over, about having to step in so many times because of the disappearing nurse. This was the first negative experience with any of the nurses, and I am on my sixth infusion overall. This nurse had a fun personality, but did not instill confidence that she was on top of her job. I’d much rather have a curt nurse rather than an unprofessional one.
Other than being perturbed at my nurse, Grey and I had a nice after chemo lunch date, then went on an errand run to Home Depot. It’s nice to have a bit of energy and not be nauseous after chemo. On the downside, I’m still not totally used to people staring, and I catch them looking. I’d probably look as well at a lady in her beanie who appeared to be bald under there. Some people are nervous to be around me because they don’t quite know what to say – cancer reminds people of their mortality. Some aren’t quite sure how to act after you’ve experienced a death in the family as well, and I experienced some of this discomfort, even avoidance, from others after my mom died. Most people who know me relax after we start visiting and they realize it’s mostly the same old me, only bald and tired. Thankfully, I have only had a few looks of pity, which I really do NOT like!
Sleep on chemo night. Tuesday night after chemo proved to be a rough one for sleep with the steroids keeping me wired with only a few hours of sleep. I will come to find that this is the same every Tuesday night.
Wednesday. 1/17. I was very tired all day due to the lack of sleep, and we had Mikala’s first band concert that night. Normally I am excited about her band concerts as her teacher does and exceptional job with the students. This time, I was not looking forward to the crowd of parents, families, and friends potentially carrying flu or other cooties right now. I just have to suck it up and go to my girl’s first 8th grade concert. It should be her second concert, but her band teacher had to have emergency appendicitis in the fall and took a long time to heal. He did NOT follow ‘doctor’s orders’ and went back to work too early, even trying to do full days instead of half days. Because of this, he had a few setbacks that kept him sick longer, so the fall concert was cancelled. Then, over winter break, the poor guy got mugged downtown, which resulted in a bad concussion and some short-term memory issues. At the concert, he said this was the ‘worst year of his life’, and I am sitting there thinking, ‘tell me about it – Me, too!’ He got teary eyed at the end of the performance – he’s one of those teachers who loves his job and takes pride in his students’ accomplishments. I so appreciate teachers like him.
Image: Band concert – Mikala is hidden behind her teacher.
Thursday. 1/18. Yeah, I slept well after the concert. I’d say I woke up refreshed, but not really. I am not exhausted all day like in the fall, but I am more tired than I want to admit. I have a few aches and pains, so I just blame everything on chemo instead of aging. The best thing about Taxol over A/C is that I am not taken down all day snuggling with the couch. I’ll take this tiredness over that fatigue any day.
Working. I took winter quarter off since I’m going in for weekly infusions, and let’s face it – I am being slowly poisoned with toxins. Now, just a few weeks into winter quarter, I am getting a bit stir crazy sitting around. I have plenty of projects to do around the house, but they take physical energy and that is in limited supply. I think I’ll be fine going back to work spring quarter – which starts April 2. If I had to teach face to face classes, I don’t think I’d have the energy for that, but being all online seems manageable at this point. I do worry about overcommitting – a tendency I have at times, but if I use the time I have now to build classes, I can open the full quarter and only need to deal with grading and student Qs/ issues once the quarter starts. That sounds like a plan, and my future tripping self loves plans! My job helps to harness my tendency to ‘future trip’ as it requires me to plan ahead. So, I start harnessing that mental energy and working on my syllabi. Grey came home, ‘caught’ me working, telling me that I was supposed to be ‘off’ and focusing on healing. This, to me, is part of healing.
Food Fairies. My food fairies this week included Asa and Chris. I got short visits with both, and I always enjoy these ladies’ company. I even had a bonus food fairy this week when Terrie took me out to lunch. Our fabulous lunch date included Grey, Mikala and Wendy as well, so it was a fun Saturday lunch with lots of laughter. I love spending time with these amazing ladies as well and it felt good to get out and feel a bit normal. I am humbled to have so many wonderful people in my life.
Sunday. 1/21. Oh, ick, there is my old nemesis, aka depression, rearing it’s ugly head. It’s like a letdown after a good day yesterday. So many cancer patients experience depression and anxiety through this process, often for the first time. It is a significant reason why many cancer patients seek out therapy. Depression is my old frienemy, so I am familiar with it already. The only real part of the ‘friend’ portion of frienemy is that it is been part of my life for so long. Thankfully, it is only a blip on the radar and it’s presence is minimal due to everything else taking over. Maybe it was just ‘visiting’ in place of the anxiety and to remind me it’s still there.
Tuesday. 1/23. Here we are, Taxol infusion #3. Today is a doctor visit day, but since my oncologist is gone this week (I hope he is on vacation, but I don’t’ remember), I see Mary, a nurse practitioner. I knew this when scheduling, so it’s no surprise when we go in. She is very personable and seems to have a lot of energy – yep, I’m a bit envious there. We talked side effects and the only thing that really stands out at this point is the continued digestive problems. I am worried about using too much chemical assistance on keeping the digestion on track, even though the high fiber diet and loads of water are not doing the trick. This is part of the downside of having a background in health science education – I know relying on these aids can make you dependent on them. In addition, dealing so many years (seven) with Mikala’s stomach issues before she was diagnosed with stomach migraines (aka cyclical vomiting syndrome) – before we knew what they were, they kept telling me she was constipated – kept me focused on digestion. It’s a joke now with my family because if anyone’s stomach is hurting, the first thing I ask is, “When did you last poop?” “Did you drink enough water?” “Are you eating enough fiber?” I get teased for this one – love you Kristy and Cole!
In response to my concerns about becoming dependent, Mary is basically like (my paraphrase), “you have cancer and are going through chemo, so do whatever you have to do to be comfortable.” Understood! I do ask about not being scheduled with the slow nurse, so they put that note on my chart.
Image: Red cheeks (from the steroids) and bald head, starting to lose eyebrows and eyelashes slowly
Thursday. 1/25. I stay strong through Tuesday and Wednesday, then I have a breakdown on Thursday. It’s not really about food, but part of it is. I love to eat. I love the texture of foods, and I especially love salty foods. I have a ‘salty’ tooth rather than a sweet one. Hungry – eat. Bored – eat. Stressed – eat. Socialize – eat. I think I already wrote about exercising only so I can eat more. Well, there is some truth to that. Eating just makes me feel good, and since I like eating so much, I try to pile up on veggies and fruit to appease my appetite. But now? My tongue feels fuzzy and big. It is like I ate a cat and had an allergic reaction on my tongue. Flavors are altered and I am not able to taste many foods. I eat anyway. Not for pleasure now, but because I know if I don’t I will suffer more. No, my breakdown today was not just about food. It was about the whole process. The taste of food, the stomach issues, the hot flashes, the cold flashes, the poison I keep allowing them to put into my body, having fucking cancer. Today I breakdown and Grey lets me lean on him. Maybe I’m really losing it now because I start laughing in the middle of this gut wrenching crying. Then I cry. Then I laugh. Then I laugh and cry at the same time. Poor Grey.
Again, I am thankful for the social support and my amazing food fairies with the delicious foods and extras they bring that brighten my day. Thank you Heidi and Anne for your beautiful selves and bonus treats of flowers and frozen purple basil pesto to save for when I’m able to fully taste again.
Current Status: Lumpectomy surgery is tomorrow, April 12. AACH! I am apprehensive about going under and what the actual tumor results will reveal and how many lymph nodes my surgeon will have to take. The great news is that the 3.6×2.6×2.4 cm tumor is now a 0.8×0.7×0.5 tumor – all that damn chemo worked it’s magic – YEAH!
Sunshine in April 
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