The Chemo Diary – Fourth and Last Dose
I received my forth and last chemo dose on Tuesday, December 13. Like other doses that included steroids, I felt fantastic until around 8PM the following evening when, in the middle of dinner, my ability to taste anything vanished.
It is now Sunday evening, December 18th (my 51st wedding anniversary). I had hoped that by now I’d be an expert in what to expect and, because my dose was lowered by 20%, getting through this last round would be a breeze. The cruel fact is that even though this was my last dose, the aftereffects still exist; no avoiding them.
My plan for this last Chemo diary is to collect my thoughts and provide tips for other people going through something similar. In the meantime, I’ll still report my day-to-day experiences.
Day 1 through 2 (12/13 and 14) – Tuesday through Wednesday evening
I planned meeting with my surgeon at Memorial Sloan Kettering in NYC for Wednesday because I knew I’d have enough energy to trek through New York City and see some of the holiday decorations. After scheduling the mammogram for Friday, January 13, Phil and I briefly shopped at the fabulous Bryant Park Holiday Bazaar, then dined at Heartland Brewery. Unfortunately, in the middle of a delicious dinner, my ability to taste anything gave out just as I started to eat a salad with fiery, hot salsa dressing.
Day 2 through 5 (12/15 through 12/18) – Thursday through Sunday evening
My urge to sleep kicked in and I had more trouble with leg cramps this time around (somewhat resolved with periodic exercising as reported in my first Chemo diary). Luckily, burning crotch did not return. Being awake versus asleep cycled in intervals of about an hour to three hours. If I was awake, my brain was poised to go back to sleep again.
More alarming is that my oncologist said that Chemo was causing me to have neuropathy, which is nerve damage in my fingers. Nerve damage can cause the loss of feeling, tingling, pain, changes in the way the skin feels and small motor muscle impairment. To me, it felt like I was growing wee paper bags on my fingertips.
During my last Chemo session, I first noticed that the tips of my thumbs hurt, then I noticed that skin irregularities appeared. Last I noticed that my fingertips were splitting and that I lost my actual fingerprints. I could no longer use my thumb or forefinger to open the security function on my iPhone and iPad.
After searching the web for a potential cure, I discovered that there were none and I have to rely on my own invention to cure myself.
Since discovering the problem, I spent time brushing my fingertips with a fingernail brush soaked in Johnson’s Baby Gel. This time, I added scrubbing my fingertips with pumice, using the brush you see below.
The pumice appears to be doing the trick. My fingertips now feel lively and I’ve managed to get rid of all the cracking skin, although my thumb tips are still sensitive. The red irritations growing up my right thumb and left forefinger are also greatly reduced.
I plan on pumicing my fingertips twice a day, plus slathering on hand lotion every chance I get. While I can see my fingerprints, the ridges still are not strong enough to satisfy my electronic equipment’s security features but thankfully, I can open everything with the security code.
At this writing, I am still tired. When I pick up mental steam, I’ll report on how important skin care is when you undergo Chemo. For now, however, I am going to bed.
Day 6 (12/19) – Monday
I went to bed with a cough and woke up with a nose that runs like a faucet. There is nothing about Chemo that produces physical responses like what you might already know. If you think you are familiar with colds, for example, what Chemo delivers is something else altogether, so there is no reason to match what you knew about taking care of yourself with what you have to do now when you are amidst Chemo’s aftereffects.
In my case, every valve in my body that are supposed to prevent leakage from various “ports” have ceased to work properly. To cope, it is best to have incontinence pads and the softest tissue available. Do you have to go to the toilet. Well, go! and go quickly. I wear cotton T-shirts almost exclusively and I like keeping them spotless. Unfortunately, my leaky nose drips at unpredictable times and even making a grab for a nearby tissue box isn’t fast enough to keep the drips from ruining my shirt.
Thanksgiving occurred during Chemo 3 and I found that being with family for several days really reduced my episodes of tiredness. My husband and I are fairly alone for this period, however, and my sleepiness has returned. I’m hoping I’ll be over all this upcoming holiday weekend, although that is the period when my white blood cell count will be at my lowest, so I might be more perky, but I’ll be subject to catching every germ and virus that surrounds me. Grrrrrr.
All that said, it feels like the tumor that will be removed next month has shrunk considerably.
I have stage 3 HER2 Positive Breast Cancer which, as I understand it, means that the tumor attached itself to some skin and because of that is more likely to affect the lympth system than HER2 Negative Breast Cancer. OK – maybe I am wrong here, but I think that is the bottom line. For more information read the article, “HER2-Positive Breast Cancer Survival Rates and Other Statistics.”
My next decision after a mastectomy will be as to whether I submit to radiation treatment in the form of proton therapy. The information I’ve read is mixed, with some saying that this type of therapy is only useful for 10 to 20% of cases, but within those cases, having the treatment increases survival rates significantly. Well, if I get the therapy, I want my oncologist to clearly tell me that eligibility is statistically well-founded and not a best guess. If it is just a guess, or “well, we do this to everyone because it seems to be a best practice,” I will skip it.
At almost 73 years old, it seems to me that I better make better use of my time on this earth than chasing procedures that will give me more time on this earth, but time tied up in therapies. Consider that proton therapy takes place daily for at least 5 weeks! And then there are all the add-on treatments that will be spread out over the year or years . . .
I will be writing about how to make decisions about what I will be doing with my time on earth in the near future. In the meantime, I’ll be sticking around the house recovering from this last Chemo dose, doing frequent 5 minute aerobic exercises and massaging my fingers.
Day 8 (12/20) – Tuesday
Cough. Watery, runny nose. Diarrhea. The night before, my legs were consumed by muscle spasms so much so that mid-night, I got up and eat a banana to balance out my potassium intake. That worked, but note that I eat bananas daily so I have no idea why I developed problems on this particular evening.
There is, as I’ve found out, no predicting what my body will do, so am just taking it as it comes. The good news is that I have not had a fever.
Days 9 & 10 (12/21 and 12/22) – Thursday
Continued watery, runny nose. Tired! Ear ache last night, with continued runny nose this morning, with a short period of it being bloody. No fever, however. At around 4PM, I’ve had a surge in energy and am now focused on cleaning the house without feeling the need to periodically nap.
Day 11 (12/23) – Friday
Yeah! I have all the feeling in my fingers back. That said, I will continue brushing my hands, messaging my fingertips and applying hand lotion.
Days 12 through 14 (12/24 – 12/26) – Monday
We spend Christmas Eve in Brooklyn at the Marriott Brooklyn Bridge Hotel to be near family (and avoid long interstate commutes). Here our grandkids can swim during the day and in the evening we all head out to a restaurant.
I, of course, was tired, but being around lively people kept me awake. I did, however, attempt a one mile walk which was a bit of a stretch, During the last half-mile, I kept wanting to lay down on the sidewalk to sleep.
I have been beset by the night sweats which, along with a runny nose, is another side affect of chemo. By around 3AM, I need to change my clothing, as everything (especially the shirt portion of my PJs) is uniformly damp. Luckily, I have plenty of T-shirts, but this is annoying.
In terms of eating, I’ve been able to avoid any type of meat, but fats do creep into everything else, from eating out to family dinners. I’ve given in to small nibbles of cheese and am not worrying about oils or butter that goes into veggie dishes. My family has a pretty light hand when it comes to oils, so I figure I’m able to tolerate it (fingers crossed, of course).
My time will now be focused on getting down to 150 pounds before having the mastectomy in mid-January, plus I am doing a lot of thinking and online research related to the subject of radiation (Proton radiation). I do not want it. Radiation is given to people who have a 5cm size tumor and mine is 1.1cm. The Catch 22 is that my type of cancer (HER2 positive locally advanced) anchors itself on skin. Now then, I am just abut 73, so should I look at “fighting” the possibility of cancer returning in the next ten years over ten years, or should I assume that my lifestyle (whole-food, plant-based) can provide degrees of protection.
For a good description of the type of protection my diet can provide, check Food as Medicine on NutricianFacts.org. Whether you read or listen to this information, pay attention to how the diet affects diseases like arthritis. If you have forgotten, since starting this diet, I lost all body pain and fibromyalgia, I now have complete flexibility, and my two injured knees have healed.
January 2 (Monday)
My chemo sessions are officially over. I’ve had a cough off and on to the end and still have tired periods, however, my brain is fully engaged and I am picking up stamina.
Between tomorrow and January 14, I will continue going in for biological therapy infusion (Biological Therapies for Cancer), which I’ll be doing every three weeks for 14 (or so) sessions. On Wednesday, I visit Memorial Sloan Kettering for a pre-surgical check-up, plus arm measurements for my surgeon who is studying lymph node issues after a mastectomy. And on Friday the 13th, I’ll have a mastectomy of my left breast. Those adventures, the end results of which last to the end of this month, will be the subject of my next diary.
My big decision is whether to get radiation. I am being pushed to get it, but I am not on-board. We’ll see what information will be provided to me to help me make the decision.
This diary is written by Karen Little on a day-to-day basis as she experiences her first chemo treatment for breast cancer. Photography by Karen and Philip Little. Published as a series starting in October 2016. All rights reserved by Karen Little and Littleviews. Questions? Please contact Karen at Karen@Littleviews.com.