Thursday, October 13, 2011

Oops, make that round 3

So, it turns out that I had miscounted: I thought this was the last treatment of round 4, and it was actually the last treatment of round 3. Wow, it really seems like this has been going on forever. I think 2 months is still a long time, but I could have sworn it was 4 rounds in the bag. The PET/CT scan will still be in just over a week, and this will determine how much is left to go. Basically, it will be a minimum of two more rounds (6 more weeks) with a possibility of more. 

I was feeling great yesterday -- the day after chemo -- and remarked several times to Jen that I was amazed how normal I was feeling. We even went dumpster diving for cardboard (its a long story). But today I woke up feeling clasically chemo-y: achey, back pain nagging me a bit, some nausea, super-tired, distracted and not very sociable.

But, I also learned today why this sudden shift might have occurred.

I talked with a new "healing coach" today, who is the first person I've ever spoken with in this process that is fluent in the language of both western and alternative medicine. An RN with 35 years experience, her whole job now is to bridge the gap between the two. Usually -- and maddeningly -- practicioners are great at one side, and know only a very little about the other. Ask a doctor about acupuncture and they may say: " well, I suppose it can't hurt..." Likewise, they'll discount any herbal remedies and will most likely want you to stop taking the, because they don't know what they do or how they work. Ask (most) acupuncturists about interactions of carboplatin and gemcitabine and you'll get a similar blank stare. Its just not in their field of practice, and understandably so.

I was talking with the healing coach about acupuncture (which she thinks is great and perfect for me) and I was commenting on how it tended to make me feel tired and a little emotional/weepy afterward. 

"When are you doing acupuncture?" She asked. Which was an unusual question, I thought. I responded that I'd been doing it usually the day after chemo, but recently I've been moving it one more day out, figuring that they seemed to be interacting in some strange way that was giving me these uncomfortable reactions. "Are they giving you a steroid as part of your chemo?" she asked. Yep, they do. They give me something they call "Dex" (short for dexa-something) which is an anti-nausea med and also has a stimulant component that masks some of the chemo symptoms. She said that most docs or nurses won't tell you this unless you ask, but the steroid can drop you like a stone about a day or two later, leaving you tired and weepy. She said that it wasn't the acupuncture but the *steroid* that was causing this. Really good to know. I'm trying an experiment now where I move the acupuncture out to 5 days after the chemo, so its not having to fight the chemo drugs so hard and it can do its thing better.

She recommended that I not do chiropractic at all right now (it is far too jarring to the system for me right now, she said) but that I do pursue massage. She underscored the need to find a massage therapist that is specifically versed in treating people with cancer who are undergoing chemo. As an example, they need to know what I mean when I say that I have a port, and how to work around it, etc.

She also recommended that I look into a nutritionist, who would understand how the drugs affect me on a cellular level, look at vitamin deficiencies that'd have, etc. She pointed out that these are different from a registered dietitian (which I am personally skeptical of since (last I checked) dietitians they are still taught 1950's food-pyramid approaches to nutrition. She pointed out that nutritionists are usually not covered by insurance, but dietitians are. So, much learned today, and its nice to find someone in the medical field that doesn't just think that the "alternative" stuff just is a bunch of bunk, and finds value in it. I'm not going to treat my cancer solely with herbs, but I'm damn sure going to supplement the chemical treatment with a carefully reasoned list of helpful alternative therapies. 

So, in all I learned a lot today, even if I didn't feel very good.

A new symptom that I'm encountering is a fairly persistent sound of blood rushing in my ears, in time with my pulse. This happens when at rest, even. Its happening right now, has been for hours, and I'm sitting on the couch. My blood pressure is consistently fine and I haven't had any caffeine since this morning. My best guess is that its my blood cell counts dropping and thinning my blood, but its worth a call tomorrow to the oncology nurse, anyhow. I don't feel faint or light headed. It's just something  I'd like an explanation for.

9 comments:

TootsNYC said...

I had a similar rushing sound in my ears after Grace was born--the doctor I went to see about it decided it was an ear infection, I think. Anyway, a round of antibiotics took care of it.

Deborah in MN said...

It may be tinnitus. I looked it up on Mayo's site and sure enough, cancer treatment can cause it. http://www.mayoclinic.com/health/tinnitus/DS00365/DSECTION=causes

knowledgemama said...

Have you met with any of the practitioners at the Penny George Institute @ abbot? My mom has raved about the folks there. Also, abbot has a foundation that covers some expenses. Go acupuncture! :) maybe cranio sacral would help that blood rushing? Big gentle hugs, Lynn S-M

John Slade said...

I think that as your body is entering this highly chemical, even alchemical state, that the connection between the Western material world and the liminal world of the Fae is wearing thin for you. The rushing you hear is the wind of Faery blowing over you - as it does all the time - but now your finest of bones and smallest of muscles and most sensitive of nerves are able to listen across the walls of the Everwhen.

Or maybe you're just having a constant headrush. One of the two.

Laura said...

Wow, how nice is it to see that East is really starting to meet West. A healing coach, that's fabulous! I am so happy you found someone to talk to that understands! I know it isn't quite the same, but I am constantly having to advocate for my daughter with the wider educational world so they understand how to help her with her ADHD. It always feels I know more than the people who SHOULD know more. When I find someone I can actually sit down and get advice from instead of giving advice to, it's pretty special. it is sort of like a weight off the shoulders and a nod that I am not crazy or spinning my wheels. Much love and good thoughts your way...


Laura

Wendy said...

I love the idea of a healing coach - that is awesome!
Something to think about now that I'm in nursing school...

I have a good friend that was doing cranial-sacral work. If you're interested let me know & I can try to hook you two up.

Much love,
Wendy

Eclector2 said...

Well you had me confused with the round 4 business. I went and changed my calendar convinced that I was wrong. But I wasn't wrong, I was right and it does seem like forever that this has been going on.

I love that you got such good information from the healing coach. It seems that we have to work very hard to get information.

Speaking of which, I heard about a book "The Chemo Zone" that is for people going through Chemotherapy. Mayo and MN Oncology are both endorsing it. I will try to get a copy. Amazon has it: http://www.amazon.com/Chemo-Zone-Living-Flourishing-Chemotherapy/dp/1592984142
Love, Mom

Cathy Crea said...

Ooh, maybe you're developing spidey-senses! I realize this would be more plausible if you were getting radiation, but I think there may be a comic book hero in there anyway. Pow!

RachaelHD said...

When I was having all my horrible health-problems a few years ago it was the health coach at Penny George and the nutritionists and acupuncturists there that helped me figure out what I needed to do. I am really glad you have that resource.

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