Seasick: Awash in a Sea of Side Effects and Symptoms

The past week has been a tough one.

I started another round of radiation therapy on Monday, this one to my spine (tumors in T-5 and T-6 are lighting up brightly on the PET) and to a rib that was broken by a tumor.

This is actually my FIFTH series of radiation treatments, and that simple fact has been getting me down. My body is a map of small black tattoos, marking the boundaries of past radiation therapy treatments. I joked with the radiation techs that we are soon going to run out of real estate.

And that is, sadly, true.

Three weeks of five-days-a-week radiation this time, which means I'll finish just in time to feel crappy at Christmas. Oh, joy.

I'm also about two weeks into my new chemo regimen with Tykerb, and it's too soon to tell if it's working, but not too soon for it to cause me problems.

On top of this, the fracture in my pelvis (which was treated with radiation in September) still really hurts. We didn't know then that the tumor had caused a fracture. And I, stupidly, was being stoic about the pain.

Actually, that's not entirely true. It is very hard to judge pain, especially when something has been hurting for a long time.

My doctor tells me the fracture is healing, but it may take months.

I talked to him about it again last week, because I was wondering if--even though I usually avoid surgery at all costs--it should be pinned. But he says that it's OK as is, that it's not in a area of the pelvis that bears much weight, and so, even though it hurts after I walk the dog, exercise is fine and may actually help it heal faster.

OK. Guess I've got that.

But I can't roll over in bed at night without waking all the way up and supporting my leg as I roll. It hurts that much. And when I get out of the car, I have to lift my leg and support it as I turn to get out of the driver's seat.

And this level of pain is with pretty heavy-duty pain meds.

It gives me the willies to have fractures just sitting there. Sometimes I can feel them moving.

So what else went wrong this past week?

I got sick, with what feels like bronchitis. I'm coughing up thick green gunk, and can't get my breath at night after a long coughing fit. I'm using my neti pot to keep my sinuses fairly clear, and I've gone in the sauna once or twice to try to clear the gunk out of my lungs.

I asked my doctor about an antibiotic, and he said not until I have been sick with this FOR THREE WEEKS.

I didn't have the energy to argue with him. I also have three more doctors on my speed dial--I could have called them all, to see which one would agree that I don't need this infection on top of everything else.

Oh, and then, to top it off, I broke my glasses. I left them on the bed when I went to sleep, and rolled on them during the night. The frames were toast.

I usually alternate between glasses and contacts, and wear my glasses at the computer and when I'm editing. Didn't have that option this past week.

What I Really Wanted to Write About

All this is a long intro to what I really wanted to write about, which is that so many things are going on, and going wrong, that I can't sort out the side effects and symptoms--what is causing which problem?

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---Real Life Break: Two cute little boys from across the street came to the door just now to ask if they could clear off my car for 75 cents. That made me realize that it is actually snowing out. Or had been, earlier.

I don't really need my car cleared, and the snow is only a thin dusting, in any case. But they cheered me up, and I think what they really wanted was my permission to take the snow off my car to make snowballs.

So I found a handful of change--about $1.50--and paid them. So sweet: they were thrilled.

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So, here are the problems:

Heartburn and nausea. The heartburn is caused by the radiation therapy, because my upper GI tract is getting burned along with the spine. The nausea? Not sure.

Upset stomach. Could be the Tykerb. Could be the radiation. Could be the upper respiratory infection.

Diarrhea, alernating with constipation. I'm tired of blogging about my lower plumbing, but it is the most common side effect of Tykerb, so guess it's relevant.

At my doctors' advice, I stopped the Tykerb for a day (this was after a week of severe diarrhea) and then started again, on a reduced dose.

My initial dose was five of these orange horse pills. So the first day back on the Tykerb, I took two. The next day three, and so on until I was back up to five.

My plumbing is better, but the pain meds are causing constipation, which is then alternating with diarrhea, although not nearly as severe as before. This is so much fun.

I'm not supposed to eat for an hour before or an hour after taking the Tykerb, which is a problem for me because I'm not usually hungry in the morning. I have a couple of cups of coffee and wait for my body to wake up before I eat, usually not till 11 or 12.

I was taking the Tykerb at about 10:30 a.m., but then I was feeling crappy after I took it--upset tummy and kind of a swimmy, seasick feeling.

So for the past few days, I've switched to taking it before bed, at least an hour after my last meal of the day. I figure if I'm going to feel crappy, I might as well feel crappy when I'm in bed anyway.

This seems to be a good plan.

Then there was the seasickness. My vision was blurry and swimmy, can't describe it any better than that. I didn't want to wear my contacts, because I thought they were adding to the problem, but the glasses were broken.

Laura, who works at my glasses place, is great. She sorted out a new pair of frames for me, promptly, and didn't charge me for them. That was an unexpected gift.

On Friday, I picked up my glasses and have been wearing them, rather than the contacts, most of the time since then. The seasickness is better, but what was causing it? No clue.

So, that's the list.

Despite all this, I've managed to have a fairly productive week. I had papers to edit for my students, which took up all of the time that I would normally be blogging. So I'm behind there. But the papers are done, and my final class of the quarter is Tuesday, so then I'll have more time.

I made a batch of strawberry jam on Monday--this is one of my Christmas traditions, to give homemade strawberry jam (from my own berries, which have been in the freezer since June) to friends and family for Christmas.

I finished one scarf, and am working on a second one.

And yesterday my friend Linda and her daughter Megan (who is also my friend, of course) and I made candles. This is also a tradition--we've been doing this together for several years.

I'm finishing up a final candle or two today, and knitting this gorgeous scarf, and I want to get some blogging done--lots to write about.

I think there is a point to this long post, besides my need to vent. And that is that when you're in cancer treatment, you end up with all these side effects and symptoms, and you just have to live with them.

Yeah, there are some things you can do--and I'm doing most of them, and still, like I said, awash in a sea of side effects.

A couple of my blogging friends, specifically, Amorette and Lisa, have been e-mailing me on similar topics--Amorette has some problems caused by treatment she had more than 20 years ago, and Lisa is still sorting out side effects from her recent radiation therapy.

Please remember: I don't like advice. I'm not writing this post because I want readers to send me suggestions.

If you want to add a comment about your own treatment side effects and how you dealt with them, that's fine. JUST DON'T TELL ME WHAT TO DO.

And if you're selling something, stay off my blog. If you post a comment, I will delete it, and I'll add you to my published list of quacks. I'll also make fun of you. This blog is not for you!

@ Jeanne Sather 2007.

Comments

[Amorette]

I've long thought that there needs to be a whole subcategory of oncology just for radiation after-effects.

When you've been radiated, it affects everything. Bone doesn't heal right. I've been walking around with broken spinal fusions...technically a "broken neck" for YEARS, simply because it can't be fixed. The bone is dead and won't grow back together.

Ditto dentistry. My dentist is scared to death to do anything to me, lest it compromise my jaw structure. The radiation itself did away with almost all of the enamel of my teeth, especially my first molars as they developed in my jaw. As a result- my teeth are as sensitive as if they had no enamel at all, and they break into pieces with frightening regularity (my front tooth broke twice in the past 3 weeks). The dentist says he's running out of natural tooth to glue the bonding to.

My thyroid was baked into the back of my tongue by the radiation. They say it's hard as a salami, they can't even get any cells aspirated for a biopsy.

And the spasms...oh, far and above the spasms...are the absolute worst. It's like a charlie horse that suddenly hits the side of your neck, or between your neck and upper arm, simply because you tried to lift a book or a binder of papers. Toward the end of my hospital career, when I was pushing hard to stay employed, I'd have moments I tried to do a perfectly ordinary bit of hospital work and would just be hit with wave after wave of these spasms. I've been on the electro-stimulation therapy (made them worse) and even MS drugs, nothing helps. All of my muscles are hard and stringy like overcooked pot roast.

I have hard lumps in my cheek and neck that I'm told are benign nodes that are just baked to pea gravel. I can't have surgery to have them out because of everything else going on. Lumps are unsettling and I don't like them.

And the fact that you can't be radiated in the same spot more than once...that is abysmally, infinitely depressing.

Equally depressing to me...almost worse...is the infertility. I don't even want to go there right now because that tends to set off a very bad trend of depression for me.

Radiation just turns you into a wild card. Logic stops applying. Doctors either ignore it or tell you frankly that they have no idea what to do with you.

And you always wait for that other shoe to fall...what else is it going to do?

I understand and sympathize 100%, Jeanne. I don't know who decided we haven't suffered enough, or why.

[jeanne]

Amorette--the ranting helped me. Hope it does you.

I'm tired, since I didn't sleep well last night, so I'm going to head in for a nap. I've been not answering my phone, temporarily able bodied friends who want to check on me and I don't feel like talking right now, just blogging.

Isn't that a great expression: "temporarily able bodied"? I guy I knew in college, whose name I can't even remember, who had MS, used that expression. He said we'll all come to it sooner or later, some just a lot sooner.

Hang in there kiddo.

You're right about radiation. We need to get a whole subset of oncology devoted to this, as you say. Of course, for those of us who have been nuked and nuked ...

I think our project for 2008 should be to find a baby for you. Switching over to e-mail for the rest of this thought.

Jeanne

[Sara]

Okay, so here's what you need to do:

HA! Kidding!

I really would like one of the priorities in cancer research to be improving patient toleration of the so-called "treatments."

Meanwhile, I send you more chubby baker hugs, but not so hard that they make your mets hurt.

P.S. -- If it makes you feel better, and I'm not sure why it would except maybe it's kind of funny, I can go you one better on the glasses story. I used to have two pairs. I also used to use a wheelchair in the house. I have already told you one tale of woe about launching myself into the wheelchair and missing. Well, there's another one where I had to get up in the middle of the night to care for our then-dying cat, launched myself from the bed into the chair having forgotten that I'd oh-so-cleverly left my glasses in the chair, and landed with the full force of 200 lbs. plus momentum right on top of them.

It was very, very sad -- and a little painful.

Thank goodness they weren't my reading glasses!

[Jacqueline]

so much is here. damn, you're generous to give us so much!!! (and that snow ball intermission was, indeed, adorable) but ya know? it's your endurance to navigate through and weave those treatments and side effects with knitting, teaching and writing that i find so damn impressive- jeeze Jeanne! you take on cancer like a MacGyver.

[Jacqueline]

for those too young to know...

http://en.wikipedia.org/wiki/MacGyver

[jeanne]

Sara--thank you. That is a great glasses story. We've got to keep laughing, I guess.

And Jacqueline. Thank you. I love you, girl.

Love you both.

After I put this post up, I had second thoughts, and almost got up in the middle of the night to delete it. (Good thing I didn't: I'd probably have destroyed my new glasses!)

But thanks for telling me that my telling the whole story about cancer is OK. Not just the upbeat, Cancer Patient as Superhero side of the story ...

[Jacqueline]

OH JEEZE! never delete. place it in "draft" form and perhaps give it some thought. but please oh please never DELETE!

[Beryl Gorbman]

Temporarily able-bodied. Then, there's intermittently able-bodied. As I wait for the other shoe to drop, (progressive heart disease), I can only hope I'll be able to retain my sense of dark humor and that I will be generous enought to share my darkest thoughts like you, Jeanne. Not to mention Amorette (what a great name). Never ever think of deleting these honest posts.
With love, Beryl

[jeanne]

Beryl--that's another good one:
Intermittently able bodied!

I plan to keep my blog online even after my death, which of course I don't expect for at least a few more years.

I've thought about this, but of course I will need to put it in my will (which is due to be rewritten in the New Year anyway, for a variety of reasons) and also find a person to monitor it and respond to comments, if not add new posts.

[Ivy]

Hey, I found your blog because I am on my 11th round of radiation treatment for metastatic breast cancer which is sitting in my spine and down by my liver and kidney in soft tissue.

I thought I'd had the worst, after Taxol, but radiation pain is a new one. It's bumping my gastroesophageal junction, causing the most intense, cramping "heartburn."

I've had to turn down what my docs wanted to give me for relief, because the liquid actually contains parabens. Amazing.

So I am sucking on Thayer's Slippery Elm lozenges, drinking watermelon juice from Trader Joes, and getting my mind off this by typing.

I will NEVER give you advice. I know exactly what you mean, because I fight so hard to research and make my own decisions, myself. It's exhausting to try to argue with people who "helpfully" come up with all kinds of stuff they think I "should" do.

It's so hard to tell them, look, I really DO know best about my own situation.

I would like to correspond with you, when we both feel better. I am in Seattle, too, on Capitol Hill, and I go to SCCA.

I put my LJ URL in the space for a URL.

I'm wishing you comfort, joy, and life.

-Ivy

[jeanne]

Ivy--yeah, who would have guessed that it would be this bad? Not me, and I've done radiation before, but it's when it touches the GI tract ...

I'm starting to feel better, and coming out of my cave a bit, to catch up on my real life, so e-mail me any time: jeanne.sather@gmail.com