Beasts & Dragons & Maps

It’s the end of Chemo Week 1, and it’s been surprisingly good!

I love a good map. Right now my online friends are drawing one up for me each and every day.

Here Be Dragons
Not having gone through chemo before, I don’t have a point of reference for how this would have felt without the amazing anti-nausea meds that are available now.

Someone described their chemo experience on my Facebook page as “flu-like” symptoms, and for me that’s definitely been the case.

These “Cyber Sherpas” help me much more than they’ll know.  And I take their advice with gratitude, with love, and with a grain of salt.

I look things up, I ask my doctor about some of the suggestions, and one or two things my doc has pooh-pooohed.  However, for the most part the assistance of folks who’ve walked this walk before me is golden, and my doc & the chemo nurses let me know how lucky I am to have a wide and world-encompassing body of Volunteer Guides.

The Best Laid Plans
Right now I’m supposed to have a tiny little pump filled with a drug called Neulasta chugging away on my stomach, but unfortunately it fell off in the midsts of 100% humidity and so much internal (from my hot, hot, body) heat.

Neulasta Pump

So instead of the pump I’ll be returning to St. John’s Cancer Center tomorrow for a Neulasta shot.  I mentioned this on Facebook and immediately received several suggestions to help deal with the bone pain the drug may cause prophylactically, and that kind of back and forth between me and folks who’ve walked this walk are priceless to me.  To be honest, I didn’t even KNOW there might be bone pain involved in this phase of the treatment, I am SO grateful to my online friends for pointing this out!

Claritin & Tylenol, at the ready, Barb!

Help From My Friends
I’m not looking for a “real life” support group right now, I don’t have the energy to get someplace on a regular basis, to meet so many folks, and—most important—I’m desperately trying to avoid other humans as I move into the phase of my recover where it’s quite easy to get an infection.

My white blood cells have been reduced because of the strong drugs I’ve been taking into my system 24/7 for the past 4 days, and a low WBC count = an opening for some galloping infection.  Time to call the cavalry.

Our family has been living with a higher likelihood of infection for years.  We take this into consideration with Gerry’s heath and also because of my Fibromyalgia.  When the kids were in high school, it felt as though every day brought a new cold or flu to our household.

I learned then that to venture out into the world Gerry and I would both need to use a battalion of helper soldiers (Emergen-C, Airborne, hand sanitizer, etc.) and that has been helpful in allowing me to keep teaching around the country from fiber show to fiber show without picking up something bad and bringing it home to grow.

But now, with the Lymphoma, getting an infection is more serious.  The Neulasta is designed to help with that, and according to my impromptu online support group the Neulasta can cause some pretty incredible bone pain.

Fear has it’s uses, but cowardice has none. — Ghandi

This is a bit of a rambly post, I think that has a lot to do with a week of very little sleep and a LOT of chemo drug therapy.  In the coming week(s) I may need a transfusion or two to help with my strength.

But what I DO want to convey in this post is my gratitude to all of you who have traveled on this road, and have reached out to me, showing off signposts and short cuts along the way.

Thank you.  You make me feel braver than I am, and I am grateful!

9 thoughts on “Beasts & Dragons & Maps

  1. It’s amazing how many helpers come out of the woods, isn’t it? Surprising how many people have had cancer. I truly thought I was the only one, until I walked into that room in Stillwater. Who knew!? I wasn’t as special as I thought, and my feeling so so sorry for myself was about as useless as Ghandi says our cowardice is (thanks for that quote).

    • My sentiments exactly! When I walked into Cancer, I already had an idea of the scope of the disease on our population because of Gerry.

      It still feels odd not to be “special” (as you so honestly and brilliantly say.)

      The up side of not being quite so special? So many OTHER special folks have walked this walk and have been instrumental in discovering therapies that are helping me now.

      I count you as one of them, Barb, you have always been one of my heroines. Now I can tell you that without sounding too fulsome, because we’re on this path together. Thank you!

  2. If you have some down time, the book I Don’t Recall Signing Up for Cancer” is an uplifing/funny account of a woman’s experience with it. It kept me laughing for a few days during my treatment.

    As far as the side effect of Neulasta is concerned, what some people report as bone pain you may find it just another twinge with all the other hip pain you have reported.

    I won’t say stay strong, because sometimes we just need a good cry

  3. You probably know this already, but your health care providers refer to your drug treatment protocol as your ‘road map’❣️ Your road to recovery is paved with caregivers of every kind: professional, virtual, real and voices of reality.

    We care for and about you Annie‼️ Sounds like you did wonderfully this week. We are cheering for you‼️‼️‼️

  4. Hi Annie, I’ve caught up reading your blog, and my son had the kind of brace you have when he was dealing with a relapse of his cancer at age fifteen. He had to wear it whenever he wasn’t in bed, because the docs feared “spinal collapse,” and the heat was horrible. The brace shop came up with a high tech light metal framework brace that was much easier for him, and didn’t add any heat to the mix. You might want to find out if something like that can ease your hip pain. Thinking good thoughts for you

    • Hey Ellie!

      I hope your son is doing well now!

      The brace was great when the issue was my spinal tumor, but now it’s metastasized into my hips (at least for a time) and the tumor in the back seems to have shrunk a bit. The way the brace was constructed, it leans HEAVILY on my hip, the pain can be insane.

      I wear it for my walks, I don’t like to be alone without it. Unfortunately, it makes me rather ungainly and I do fear falling in it. I also wear it when traveling in a car, but I’m cutting down on that because the pain is INTENSE on my hip in a sitting position.

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