One Down—Five to Go

Where do I even start? It has been a little over a week, but it has gone by in a flash getting everything marshalled and ready to dive into the process of killing off the bad cells again. Plus, the added complication with the leg infection. Which might be a good place to start.

The Right Calf

The oncologist put me on an antibiotic to reduce not only the fever, but the swelling, redness, and blistery activity under the surface covering my entire right calf. The fever went away immediately and hasn’t come back, which meant the chemo could proceed on the 7th, barring any return. The infection hasn’t responded quite as well. Though I saw a reduction in coloring and the swelling had subsided a little, and it covered only the lower half of the calf, it was still tender to the touch and hanging about. The odd thing was that, though the redness had significantly decreased, when we arrived at the oncologist’s office prior to chemo start, when she checked it, it was bright red again (still only half). I’m going to figure that since my allergies were on high alert, it was some sort of systemic allergy running through me attacking the weakened areas.

Part of the protocol I’m on is a high dose of steroid, and that is knocking the rest of the infection/inflammation out, so I doubt it will be an issue for long.

The Miracle

While the calf issue may be a bit of a negative (on the run now), it has been offset by something that can only be described as an absolute miracle. In 2021, when I had a similar tumor (the drama queen) near the same place, it reduced quickly once the pre-infusion meds were started (one month prior to infusions starting) and it was gone before I hit the chemo chair. That was unexpected and amazing … BUT THIS is in the miracle category. The day following my visit with the oncologist, where we were all extremely pleased about only ONE tumor to kill, the tumor was SMALLER!!! Every day, it shrunk a bit more. No medication (except an antibiotic for the calf), so my beleaguered immune system gathered the remaining troops and launched an attack. My fighters may be few, but they are MIGHTY. 😊

The tumor didn’t disappear completely, that was a big ask for a week, but it did reduce by over 50%, so my spirits have been soaring. One question that I have been asked is whether we should wait and see what happened with the tumor instead of continuing on with the chemo. The answer is that even if it had reduced to the point of being undetectable, chemo would still need to proceed to ensure ALL rogue cells have been dealt with. In 2021, though the tumor had disappeared using an oral protocol, we still forged ahead with the infusion therapy for the same reason (plus there were more tumors that had to go.) This morning, after the completed first protocol, though still detectable, the tumor is reaching the point where I won’t be able to detect it for much longer. Which pleases me a lot!!!!

The Chemo

I have nothing but praise for the chemo nurse team. They are attentive, caring, work together, and constantly aware, regardless of what else is going on at the time.

It is usual for the first treatment to be broken into two days since they need to test each patient’s ability to withstand the treatment. What that requires is slowing the drip, then speeding it up at intervals and checking for reactions, which adds a lot of time to the process. Since it is a known factor that I DO react to one of the drugs in the protocol, that once again was tested and based on my history, it was decided that ALL future treatments will be given over two days instead of trying to force them into one. While I did quite well with the other drugs they had to test, the initial test may not show the full picture (the one I know I react to I did fine with the testing period the first time, but when they ran it at “normal” speed, I had the reaction.)

One additional factor—my immune system will require boosting since it is already too low, and the protocol I’m on will destroy what little I have left, so next week I go for my first immune system boost, which will then happen every 4 weeks.

The niceties

From experience, I tend to go pack mule on chemo days. I bring my laptop so I can work on something, usually not requiring a great deal of thought because I won’t have it as the brain fog descends, or I can pull up a show or movie for simple entertainment. In CA, they had iPads for recreational purposes, and here they have individual TVs, but I prefer my own. I bring a blanket (two purposes) because as the chemo proceeds, my internal thermostat will go on the blink and I’ll alternate cold and hot, AND it helps to keep the laptop from burning my lap. 😉

In addition to the blanket and laptop, I bring a thermos of tea, a thermos of bone broth, and a bottle of water. The nurses were somewhat scandalized that I hadn’t brought anything to nibble the first day—to me the bone broth filled that niche—so yesterday, I added some cheese and crackers and a hard-boiled egg. I also brought a bolster for under my knees. The recliners are comfortable, except there is a gap where my knees hit and day 1, that was my biggest issue … trying to find the comfort spot. Problem solved. Add to the pack.

Not only do they have blankets for those patient’s who do not bring their own, but they have a row of shelves where they are kept heated, which is a nice touch. A woman in the tech department had to come to the chemo room for some reason a while back, and noticed the heated blankets. Since she crochets blankets and sells them, she periodically crotches a few for the chemo room and the nurses give them to the patients. I was gifted a beautiful blanket of purple and lavender on day 1. I am touched by the thoughtfulness. The chemo room is also stocked with beverages and snacks, should you need them.

How Am I Feeling?

In a word, tired. Which is completely normal. I was tired by the end of day 1, and yesterday, on arriving home, my brain was foggy, and I was exhausted. Again. Normal. Today, I’m doing well. So far not a lot of nausea (though they gave me HIGH doses of anti-nausea during treatment and I have two different kinds of adhoc meds for that at home) I actually was a little hungry last night, so ate some short ribs, I’d prepared in advance. In a little bit, I’ll take a nap, which will be par for the course moving forward. Other than that??? I’m good.

Shopping Spree

One thing that will be different with this protocol vs. the ones endured in the past is that I WILL lose my hair this time. Which isn’t a big deal for me because it will grow back. Probably more unruly than it is now. The biggest question I had was when I should shave my head. The thought of having to clean up clumps of hair as they fall out just doesn’t sit well with me. Besides, it might kill off my robovac and I cannot have that!!!

My hair will thin over the next three weeks, and then fall out completely after the next treatment … so, I’ll make the trip to a local barber the week prior, get the head shaved and the barber cleans up the mess. 😊

I have always joked that I’d buy a rainbow wig if I lost my hair. And truthfully, I would, except it would be itchy on top of my bald head. Instead, I went on a little shopping spree prior to treatment. Retail therapy with a purpose. I bought several types of head wraps in various colors, all soft to the touch, so my head will be covered. I also bought the leak-proof thermoses in the necessary sizes, as well as some V-neck T-Shirts to make accessing the port easier for the nurses (and more comfortable for me since the line won’t be catching on the neckline.) and two pairs of slippers (with soles) to wear for chemo. The biggest key for me is comfortable, stretchy clothing, and even tennis shoes are too constricting.

Chemo Accomplished

This post has probably been much longer than what the norm will be, but I wanted to bring everyone up to speed on what is going on. The situation is MUCH better than it could be, for which I’m eternally thankful. I don’t think the oncologist has quite recovered from her shock over the test results being so much more positive than anticipated. May that carry through … I’m willing to accept any miracles coming my way.