My apologies for the delays in getting this post out into the world. #5 was a difficult round, more than any previous infusion cycle. My system feels strained. As usual, there are new symptoms that have popped up in addition to all the previous symptoms.
The list goes on. . . .
New Side Effects
Round 5 Infusion added fluid retention in my face, including numbness and swelling. The Oncologist has confirmed that my lungs are clear, and I have only minimal retention and swelling in my ankles and legs. I am reminded to make good use of those compression socks, push fluids and electrolytes.
The mystery heart arrhythmias that have shown up in the last three infusions prove to be solved by increasing those electrolytes. In fact, the Cardiologist says, "Double everything." It seems to work!
As well, I am having increased muscle twitching and spasms, including in my core and under my ribs. The intensity of the spasms caused my Cardiologist to cross-check previous ultrasounds and that CT scan from the ER a few rounds back to rule out an abdominal aortic aneurysm (which sounds terrible). Good news! He reports that is not what I have. Instead, I get reactive muscle spasms Docs seem to think it are primarily in my diaphragm and core. It feels like a startled bird embedded under my sternum. Yay, me.
My fingernails are still a hot mess. Same with the weeping and twitching eyes, bloody nose, sensitive gut, and fatigue. Along with the worst of the responses in the first ten days after the infusion.
Things that Help
All those Electrolytes: they address the heart arrhythmias, low blood pressure, and dehydration issues. I've tried a bunch of different kinds, and landed on a few I like, mostly for less sodium less sugar. Here's what I've been using:
- Salt Stick capsules - good balance of potassium, magnesium, and sodium; easy capsule dose; no sugar
- Salt Stick Fastchews - minimal potassium, magnesium, sodium; immediate release into system via chewable tablets (they are kind of like Sweet Tarts)
- Vali Electrolyte Salts - more potassium and less sodium than Salt Stick; easy capsule dose; no sugar
- Nature Made Potassium Gluconate - when you just need more potassium; 1 tablet per day
- DripDrop Electrolyte Powder - good balance of potassium, magnesium, and sodium; less sugar than other powder options; add to 8-12 oz water
- KinderLyte Medical Grade Electrolyte Solution - premixed electrolyte drink like Pedialyte with less sugar; use alone or add to smoothies
IV Fluids: the Oncologist made an open order for IV fluids to be administered at either of the infusion centers (at either of the hospitals nearby). These are most easily added to my Granix shots (the white blood cell boosters) given to me for five days after the primary infusion. I can also schedule an infusion appointment for fluids by themselves. After Infusion #5, I did IV fluids on days 5, 6, 7 and 8—all of them helpful and, in retrospect, necessary to stabilize me during those first difficult days.
Drink Water: The goal is 96 oz of water/fluids each day, excluding those days
when I get IV fluids (I need less on those days). I track intake using an awesome 32 oz water bottle, and most days, I get close or make the goal. Early days are more difficult because my entire system is slowed and compromised by the chemo drugs that attack the sensitive cells in the the mouth, throat, stomach, and intestinal linings.
Small Meals: My compromised systems cannot digest food very well either. The solution is to eat six to seven times during the day, each time about 1/4 of an actual meal. Anything more or faster than that is impossible to eat and/or digest.
Naps: The fatigue is REAL, and I have to ignore the overachiever in my head that tells me to push through it. Naps are good.
Exercise: It hasn't been that long ago that I was running 3-5 miles a day, and now I'm barely able to cycle (indoor) a few slow miles or do a handful of body-weight movements (yoga and/or other options). I haven't been stable enough to walk outside by myself, so I am limited to indoor activities. Anything helps. But also there are days when I cannot exercise, and on those days, I get a pass. I'd love to say I'm able to exercise every day, but that is not the case—there are definitely impossible days when I'm simply grateful to make the walk between the bedroom, living room couch, and bathroom.
You: Thank you for your cards, letters, Facebook messages, texts, phone calls, gifts, prayers, love, encouragement, and support. ALL of it helps.
What's Next
Last Friday was scheduled for Infusion #6; however, after meeting with the Oncologist, we decided it would be best to delay my final infusion for one week. My bloodwork indicated low red and white cell counts, and my overall well-being was also low. Doc said we could push through as scheduled only because it was the last one, but it would be brutal. My choice. I debated for about 30 seconds on that and made the call to wait.
I feel like it was the right call. I'm already (3 days later) feeling slightly better, but still not as well as I've been prior to earlier infusions. Everyone warned me that each treatment would be harder and each recovery longer. They were all correct.
Infusion #6 is scheduled for this Friday, October 27. I'll do bloodwork the day before, but unless it is off the chart detrimental, it won't change the infusion plan at this point. Of course, we all hope that my levels show progress from last week.
As well, the Oncologist will be reducing the dosage of the Taxotere (the chemo infusion drugs responsible for the most challenging side effects) by another 10%. It was reduced the first time for Infusion #3, which makes the overall dose now at 80%. At this point in the treatment, it doesn't compromise my chances for success or overall effectiveness of the treatment.
Even with the extra week and the dose adjustment, I anticipate a difficult last round. It's still a systemic poisoning. But I'm all in. I want this crazy toxic thing to be over. I can't do the next thing until I get through this one, including the whole I-got-let-go-during-medical-leave-for-breast-cancer-treatment during Breast Cancer Awareness Month. But I'm still working on that on all fronts, so it has to wait for another post.
What You Can Do
Send me Your Words - keep up those calls, texts, messages, letters, cards, emails. Click on the email link at the top right of this blog for my email or to ask for my mailing address.
Contribute to the Cancer Support Fund - your contributions give dollars to my primary support team for gas, coffee, and travel expenses for those people who give of their own time to come take care of me for a week and/or are running my errands and driving me to appointments. Current balance is $2.00 after Infusion #5. Click on that same email link above to request my Venmo info and or mailing address.
Gift via the Amazon registry: Hoffman Chemotherapy Support
Send Prayers and Good Healing Energy: Thanks! I need that.
Donate to the National Breast Cancer Foundation: this month (October) is Breast Cancer Awareness Month, and every dollar toward research helps the next person with breast cancer. I'm grateful for all that research that helps me now.
My deepest gratitude to each and every one of you who not only supports me, but also Rick and each of my family members and friends who are doing the bulk of the work to care for me. Thanks for being a part of our journey.
Onward!
Sherri
