Burning Relief

    YESSS! My hands are no longer on FIRE. That’s the good news. While still a little sensitive to heat, there is no question that this round was way less destructive to my nerve tissue. This is an example of why it is really important to tell your health care providers exactly what is going on with you not just during chemotherapy, but always.
Let’s start with this example. My infusion days always start with someone on the “infusion” team coming to collect me from the waiting area to take me to be weighed and get my lab work started (i.e. set up the IV and draw some blood to check my blood cell & platelet counts).  At this point, they always ask, “How are you doing today?” By that time on my last infusion day, as I had mentioned, my fingers had stopped burning, but they were peeling.
At least half the time that I go in for these, er, lovely treatments, I also see either my chemo-oncologist, or her physicians assistant. So once I’d explained my situation to my “greeting” nurses, they sent me into an examination room where, minutes later my doctor, and apparently half of her entire staff, knew what everyone who’d read my last blog knew. My hands had felt like they were on fire for most of the previous 2 weeks.
And . . . they had a plan. Evidently, I’m a little different, but not completely unique (dang, back into a boring, previously documented category with me). But they KNEW what to do!
My doctor informed the nursing staff that I was to be provided with ice packs to hold in my hands while the Taxol was being administered into the drip feed. My first thought was, “Hold on a second, my hands didn’t burn while I was getting treatment,” but before I could even express that, my doctor explained that holding ice DURING the treatment would lower circulation in my hands and diminish the level of Taxol that might travel into my hands and up my fingers. Ooohhh.
So that’s what we did, I held ice packs while the Taxol ran and I am here to testify that this was a successful ploy. Thank you, thank you very much, I accept your congratulations.
However, plotting and treating these devious little chemo-side-effects is like playing a game of Wack-A-Mole. The discouraging part is that just like Wack-A-Mole the game, there is no set pattern to learn or know in advance. We patients are given unending lists of the the most common side effects, and frequently have  advanced treatment for them (I’ve talked about how grateful I am for the anti-nausea drugs that come in both my drips, and in pills to be taken as needed, so I’m not too sick, or spewing), but many other effects need to show up in outliers such as myself before anything can be done about them. Another nearly equally discouraging factor is that I got entered into this version of Wack-A-Mole without having been given a large, weighty baton to smack things with.
This current week’s notable attention grabbers include, hot and cold flashes with no discernible fever, increased joint and muscle pain (which I have pain killers for that I’m wary of using), full body restlessness, mental restlessness, restless leg syndrome, and the new kids on the block, lower back ache that pulses, disappears, and returns, the skin on my face itches but is sensitive so actually scratching it hurts, so I rub it with my finger-tips, but they’re peeling so it scratches, and improved fatigue, as in bigger, better, stronger fatigue. I’m wanting that baton, but I probably wouldn’t be able to lift it anyway.
What I now know from so many of my experiences in the last 3 months is that when I tell my Peeps at the cancer center what I’ve been feeling, they will collectively address everything they can and much of what I’ve just described will be minimized or eradicated. This greatly improves my faith in this particular process. I, who embarked on this dubious course with trepidation and many misgivings, truly feel that vast progress in cancer treatment has been made.
What I can honestly say with positive sincerity is that this week I feel like I’d rather expected to feel like back when I first started chemotherapy, but I haven’t felt like this until NOW. No one can tell me it’s a bad thing. Even though I feel as if I’ve gone a few rounds with the flu AND a professional boxer at this juncture, I thought I’d be this incapacitated everyday from mid-November through March. Here it was only a quarter this bad for 4 or 5 days out of 14 from then until now, and will only be for perhap 50 to 60% of the remaining time after 2 more infusions. This should mean that I will be done with the worst side effects by the 1st weekend in March! I’m averaging above 50% nearly normal days! I’m stoked! Honest.
As I’ve gotten more comfortable talking about chemo issues, I’ve also found myself asking a few questions regarding other aspects of my health while chatting with my “team.” Turns out there are a number of things that I thought were just regular aspects of aging that I thought I’d just have to put up with, that can be alleviated with care or products or prescriptions. Normal joint aches, age spots, hair loss, unwanted hair, digestion issues, skin problems. My goodness, we don’t any of us have to soldier through so many things just because we “expect” to age in discomfort. Okay, Health Insurance can be a big impediment, but if you have any insurance, for heaven’s sake, go ask a doctor. If you are blessed enough to be alive, live better. Do it now. The times they are a changing, but you can still act before all insurance is stripped and replaced with nothing at all.
Good Luck! Really.

8 thoughts on “Burning Relief

  1. I’m so pleased that you are doing better than you expected. Sharing the way you have been with us has not only given me knowledge but has been encouraging me to grow in my trust and faith of my belief in a loving God that meets us where we need Him.

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    1. Randi dear,

      Your responses always touch my heart. Having you, and all the others who are rooting for me, share my little detour helps more than I can say. The reminders that I am not alone cheer me immeasurably. Thank you.

      L.

      On Mon, Jan 30, 2017 at 5:25 PM, Chemo Girl (okay, GIRL is a stretch) wrote:

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  2. OH I WISH YOU WERE WRITING LOVE STORIES HISTORICAL NOVELS YOU ARE SOOOO GOOD SO MAYBE AFTER YOU ARE DONE WITH THESE FEW BUMPS IN THE ROAD THAT YOU ARE TRAVELING ON NOW YOU CAN TAKE UP WRITING BEST SELLERS AMEN I LOVE YOU

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    1. My dearest LuLu, I don’t know if you’ve read the other comments on my blog, but you are a very popular follower! My sisters especially love to comment on your comments, but Jerry’s friend Scot just went to town on your idea of my “soon to come” best sellers. I will let you know when I get started on one!!! I love you. L.

      On Mon, Jan 30, 2017 at 5:56 PM, Chemo Girl (okay, GIRL is a stretch) wrote:

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  3. Well we’ll…not such a great round! I’m so glad you’re able to find some understanding of it all and the joy in how soon it will all be finished! I can’t wait to be there to help you experience the last of that nasty chemo! Thank you, really, for your pep talk on aging painfree!!! I’ll take that advice and raise you, sister!! Here’s to your better days and great health! ❤️

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    1. Hey Sistah,

      I love how you and Betsy always come through by really empathising, and you always have supportive, positive feed-back for my mind-set and my health. Thanks. Really. I soar on the wings that my family provides.

      XX0 L.

      On Mon, Jan 30, 2017 at 7:50 PM, Chemo Girl (okay, GIRL is a stretch) wrote:

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  4. Luann, I’m so pleased your treatment team is so responsive to your symptoms. You are fortunate to have health professionals who A) know what they are doing, and B) actually care about how you feel. Your gratitude for the many good days you have enjoyed free of nausea & other side effects since the start of treatment reminds me for the thousandth time why I cherish our friendship. Transitioning from this to a recommendation that the rest of us avail ourselves of 21st-century anti-aging remedies reveals your focus on others, not yourself. You’re a good kid, sister.

    And I have to agree with Louise — once you are through this tunnel and out in the sunshine again, you need to start writing fiction. It goes without saying it will be best-selling fiction, and when Hollywood comes knocking for the rights to film your scandalous novel about the Blahbs, please make sure my part is played by Joseph Gordon-Levitt. Or maybe Ryan Gosling, Or Benedict Cumberbatch, or maybe Jude Law. Of course Scarlett Johansson, Sandra Bullock and Angelina Jolie will be clawing out each other’s eyes for the privilege of playing you. But Bullock and Jolie are wa-a-a-ay too old!

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    1. Scot dear,

      I kid you not. I sometimes feel as though half my motivation for continuing to blog is to see what entertainment you can provide for “the rest of the week.” Your comments are always encouraging, but also often hilarious. I think Ryan Gosling would be an outstanding candidate for portraying you in all your intrepid, suave, serious humor. While you’re right, Angelina, and even perhaps Sandra are too old to capture ME, If Scarlett Johansson is too busy, perhaps Kate Winslet would accept the honor? Jerry wants my agent to approach Bradley Cooper for his role. You slay me, thanks for all the good chuckles. And thanks for trudging this road with me a while.

      🙂 L.

      On Wed, Feb 1, 2017 at 7:14 PM, Chemo Girl (okay, GIRL is a stretch) wrote:

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