Weekly Update #32

We got my new chemo regimen settled last week, but I haven’t had a chance to start it yet because the infusion center didn’t have a chair available for long enough until this Friday. I’ll be there for 7 hours, reading and napping and watching my way through. Part of why it will take so long is that most patients have an allergic reaction to my new drug the first time they take it. So they preload me with Benadryl, wait for it to kick in, start the drug, watch for anaphylaxis, give me more Beneadryl, wait for me to get better, and then start the drug up again, continuing until we get it all in. For most patients this only happens the first time, so fingers crossed. I am definitely not looking forward to it. I’ve never had an allergic reaction before and even though I know my nurses will be watching me closely, it is intimidating to know it will be coming.

Other than prepping for my new regimen this week has been about pain. My pain levels have been increasing for a while and have yet again reached the point where it’s constant and really interferes with my sleep. I am dealing by taking every pain med I can safely take together, timing things so I get the biggest help overnight when it hurts the most and I need sleep. It is frustrating to once again be in so much pain, especially when I don’t know what caused it, just that it’s related to my ongoing chronic pain in my ribs, and that I can just set it off and then spend months suffering. I’m back at PT which has historically been my most effective treatment, but that will take a while to kick in and fix things.

I have also been spending this week going through the resources I brought back from CancerCon. I knew that would be my most valuable asset from the trip, and it is good to go through it and find programs that I think could be helpful. One recurring theme is that there are opportunities to write and share more of my story in other venues and it’s something that is feeling really appealing right now. I’d like to be braver and go deeper into what is happening – not just report the highlights but really share more of the true and ugly. So I am pondering topics for different venues and trying to work up the courage to start contacting people.

3 thoughts on “Weekly Update #32

  1. Christina, you are such a good writer and I’m heartened to hear that you find this appealing. Please continue.
    Hopefully with all of the Benadryl you might get some sleep.
    You are in my thoughts and prayers.
    Xoxo

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  2. You have such a compelling voice – I hope you find more places that feel right for your writing ❤️❤️ So sorry for your increased pain, and I hope the PT helps. Sending you love and strength and will be thinking of you on Friday!

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  3. You’re doing a great job handling all this and reaching out to help others too. I wish I could have heard you sing live a while back because I love your song.

    I love my “wheelies” too; my mother-in-law calls hers her “Cadillac”. I have to be careful getting it in and out of the car, but having it carry my heavy purse and supplies everywhere takes a strain off my back and shoulders. And yeah, having a place to sit, at any moment, makes a huge difference when you’re trying to get around as much as possible. If things continue to improve for me this summer, I’m considering taking mine walking outdoors, instead of the indoor recumbent bike (which I love a lot and loathe a little, but don’t use often enough).

    May I make a suggestion? Grab a small hand mirror when you lie down, and check the area above your port where the catheter goes over the collar bone. One problem I’ve had is my catheter kinking and causing pain when I lie down in some positions, particularly if my neck is tilted in certain ways. If you are having muscle spasms, they could be aggravated by a little kink there. Being aware of it now, I’m able to readjust my head and neck to unbend a little if it starts to irritate. I’ll use my hand, or a very small half round lumbar/neck pillow, or tuck my bed pillow over my shoulder into my neck, or just make sure my neck and back are more aligned rather than my head tilted too tightly forward… when I’m resting, reading, particularly when watching tv or sleeping. It’s not actually a lot of pain, but if that’s happening to you too, it might be triggering your muscle spasms more often. I also do neck strengthening exercises and stretches from physical therapy, which helped a pinched nerve I had on the other side of my neck (from a slight injury) and some bursitis in that opposite shoulder too.

    I’m glad you’ve been able to take advantage of some new treatments and doctors and avenues of expressing yourself. Being sick is my full time job also, but yes it’s worth managing everything to get those bursts of clarity of thought, energy, and just plain get out and go have fun. I also know it’s hard to ‘forget’ being sick because of the real potential to push just over that line into a problem. But personally, I’ve finally managed to *sometimes* remember to plan time for recovery afterward, and it makes a huge difference in being able to enjoy the moment’s activity. I hope that you can enjoy a balance that works for you too.

    My thoughts and prayers are with you, Christina. Keep up the fine work. (My auto-correct tried to change that to “fiber work”, so keep that up too!)

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