Post Chemo TMI
I don't want to sound like I'm wallowing in self-pity. Although lord knows I'm practically drowning in it; who the hell wouldn't be? Thursday night and much of Friday I threw up every hour on the hour.
I seem to have developed a resistance to Phenergan, the anti-emetic I take at home to combat nausea and vomiting. Even the big guns aren't working as well: I take two Zofran tablets at the hospital right before my chemo, but this time constant tidal waves of nausea washed over me throughout the entire five hour treatment. This is not a good trend.
The vomiting has stopped now but the pervasive background nausea hangs on. It doesn't help that my saliva has become thick and foamy and unbearably bitter. I'd instantaneously divulge state secrets if I were forced to swallow the nasty stuff. I'm shaky and weak: too weak to carry the garbage can out to the curb yesterday. My bones ache, my head hurts, my intestines have turned into the world's most insufferable drama queen. My urine is a festive yet foul bright orange. My chemo zapped brain is floating in a dull fog of greasy gray dishwater; I'm depressed, discouraged, and despondent. And on top of all that, the tyrannical never ending fatigue is grinding me down like a mortar and pestle without mercy.
And yet! I survived another brutal round of chemo.
Yeah, I have four more to go, but I can't even think about that right now. Please don't even remind me.
I seem to have developed a resistance to Phenergan, the anti-emetic I take at home to combat nausea and vomiting. Even the big guns aren't working as well: I take two Zofran tablets at the hospital right before my chemo, but this time constant tidal waves of nausea washed over me throughout the entire five hour treatment. This is not a good trend.
The vomiting has stopped now but the pervasive background nausea hangs on. It doesn't help that my saliva has become thick and foamy and unbearably bitter. I'd instantaneously divulge state secrets if I were forced to swallow the nasty stuff. I'm shaky and weak: too weak to carry the garbage can out to the curb yesterday. My bones ache, my head hurts, my intestines have turned into the world's most insufferable drama queen. My urine is a festive yet foul bright orange. My chemo zapped brain is floating in a dull fog of greasy gray dishwater; I'm depressed, discouraged, and despondent. And on top of all that, the tyrannical never ending fatigue is grinding me down like a mortar and pestle without mercy.
And yet! I survived another brutal round of chemo.
Yeah, I have four more to go, but I can't even think about that right now. Please don't even remind me.
posted by Lymphopo at Sunday, December 17, 2006
34 Comments:
You're entitled!
After reading the last few post, I may not be entitled, but I'm angry.
Put your own words to I'm a Survivor.
Yup.
Donna Summer got nothin' on your spin.
xox
i like that hat.
Couldn't this be put to use somewhere...a local theatre company production of The Exorcist maybe. Who'd play the priest?
would it be too off color of me to make a smart ass comment about how at least you don't need anyone to hold your hair back for you...?
ah cancer jokes. $(*@)*!@*(#.
my told me that when she was pregnant the ONLY thing that helped nausea was cranberry juice and eggo waffles. i know. weird.
love you granny liz...hang in there...
have you ever looked into Forrest style yoga? it's starting to remind me why i use to like yoga. it's all about healing and taking care of your body. today we did a pose in which the teacher asked us to try and let our brain melt into the ground. i don't know why that image helped me release a bunch of tension, but it really did.
*wraps you in a fleece blanket and reads you something funny*
xoxo *~Sarah
(but in all seriousness, puking is THE WORST and i can't imagine how you still seem to be descriptive and upbeat and well...a whole other wealth of things about it.)
(typo-missing word-my "mom" told...)
Mm, projectile vomiting. You know, perhaps you could use that to you advantage. I think that would be a deadly weapon against terrorists. Who wants to get puked on?
Feel better soon!
Feel better soon.
Actually, I don't even think tie-dye and patchouli are legal in this state.
Dear E, I'm a fan since gardenweb rose forum days and I cannot begin to express my chagrin at reading of your travails, which fully entitle you to weapons-grade whining at any moment in time. Living here in the Emerald Triangle, I am sure I can procure and send you whatever you need, in terms of herbal assistance. You have all my love and support and if my prayers are worth anything, they're yours, too.
Susan
Liz if it isn't too prying of me to ask and actually hope for an answer...*how* please tell us how you are managing financially? Do they give you the drugs free, or on some promise of your first-born grandchild, or what? What about the chemo, do you have to pay for that too? Really I don't know. You understand it's all free here, so I have no comprehension of this.
I wonder if you said, but I missed it, or I'm just horribly gauche and there are audible gasps all over the comment section now. "She didn't!!!"
It's actually a good question, Pony. I don't qualify for free care or govt assistance because I had a little money socked away in a retirement fund. This is what they call "liquid assets," and they expect me to spend every cent of it paying my medical bills. It's not much, barely even enough to cover a month of cancer treatment, but it's what I'm living on now that I can't work. If I give this money to the hospital, I'll have nothing to live on.
So for the medical care, I'm having to go into huge debt, and just hope they won't cut me off before my treatment is finished. I'm also unable to pay my previous debts right now, and the creditors are banging at the door. This is why I'll have to sell the house. They'll take it from me in the end anyway.
Ok I see. It's a sad situation, made better if you get well. Then I guess we can be happy you had something to throw at it.
Here, basic is covered (with an annual fee that would be very small to an American I'm sure but cuts deep for me) so for example, my chemotherapy and X-rays, or CATS, Pets would be covered, but the drugs would not, and any incidentals (the likes of which I can only imagine.) That's for me, who is like you. Anyone who had health insurance as part of job benefits (and that is not all working people here either) would fare better. As it is, just so you know, I have given up most of what I had (but had no home) so that I could afford all the uncovered I needed.
No not chemo, but extensive other treatments related to disability, not to risk of death.
Canada universal healthcare is losing out to for-profit incursions. We all, if we survive, need to fight this with all our hearts and might. We need IMPACT.
I sold things I thought I couldn't live without. Feh. I'm here. I think you have waaay more resolve than I do. So I think you'll manage it too. Whatever you have to do, you will do.
xxx
So for example (I had to look this up) my annual premium for an enforced provincial premium for basic health care insurance is just over $700 a year, which includes--physician appts, x-rays, MRI, PET, CAT, bloodwork that a physician might order out patient, and anything when in hospital including drugs (but must be generic).
However unlike what I understand happens in the States, you cannot decide you want an MRI or certain bloodtests. It has to be for proven medical need, you after someone who needs it more sooner, and only on your doctor's orders, and you can't doctor shop. You also cannot see a specialist without a physician sending you, and they have to write a letter to the ie) cardiologist saying why they are referring you, and cardio has to accept you.
But it will ALL be paid for until treatment starts, and then as with your pain med etc, that most likely will not.
So I have a back full of metal brackets and screws, and I'm in deep shit a lot of the time, but I manage without, because percodan or oxycontin or what they would like me to take is almost the same as my grocery bill.
I've given up phone, and car, and all my savings and pension monies long since cashed in to live on, because getting disability payments here is very hard, not related to the degree of your disability it seems. If you can work you must work, no allowance for "there is not any work I can do". So I can only manage a couple trips a month for bus tickets and keep those for medical appts. So I'm just telling readers, it's not perfect in Canada either. But better, I know it, and worth trying to get something like this in the States.
Here, in my province, you must by law, have this basic health insurance. You are billed by the govt for it, and if you don't or can't pay, they will reposses your car, or whatever, turn you over to a credit collector. If you work, it will be taken off your cheque if you haven't paid it, without your permission, like payment on any debt.
We all never think it will be us. It's bad very bad when it is, but worse of all, is when it's one of your children (which concurrently happened to me) and you are in the same financial position.
You'd sell your house for your child right Liz? So sell it for Liz.
And yet, there it is, the same jaunty pose in the cheval glass.
A friend of mine's little eight-year-old daughter is fighting for her life against acute T-cell leukemia right now. This means she's doing round after round of vile chemo and also has had to have her brain irradiated prophylactically, as the leukemia is an aggressive, difficult to treat form and will likely come back even in spite of all this aggressive, difficult treatment, and when it does, if it happens in the central nervous system, she will almost certainly die and die badly. As a result, she throws up a lot.
She got to a point where she refused to eat or drink. She would take, according to my friend, literally two hours to eat an apple. They got into horrible fights over things like drinking a glass of juice. This hurt my friend on many levels, over and above her abject, all-consuming fear and grief over her child's illness, over and above her fear that her child would do nothing to save her own life, but also as a Jewish woman and an organic/kosher/vegetarian cook, to have your sick child refuse food from you, good food that heals and that, even when children are well, is one of the fundamental ways you express your love, argh, it's a body blow, every time. The little one ended up in a hospital recently, where it was discovered that she had a cold, but was so dehydrated she couldn't even make symptomatic liquids. At some point it came out that she had become afraid to eat or drink because of all the vomiting.
She's been on anti-nausea meds, too.
She had ended up in the hospital because of vertigo, which was partly because the muscles in the back of her little neck were all tied up into a giant knot. (Gee, could it be...STRESS? Hmmm?) Eight years old, and she was so knotted up she would vomit every time she stood up, and then the chemo was also making her vomit. Accupressure, accupuncture and massage got rid of her knots. She actually had her first accupuncture surreptitiously while receiving a chemo treatment.
The massage from a pediatric ENT who found the big knot in her neck and got rid of it and the accupuncture and a chemo treatment happened all in one day. The massage happened first and eliminated the vertigo. Then she was able to eat something so she could have a gastric emptying test (whee). Then later, the accupuncturist came to the hospital to treat her, and just happened to arrive while she was being pumped full of poison and felt extremely nauseated. When a nurse came in, they all pretended nothing was happening, and the nurse never even noticed the accupuncture needles. That night, even after a chemo treatment, the nausea and vertigo were gone, and she was actually "her old giggly self."
Is there a symptom more miserable than constantly vomiting? Okay, maybe unstoppable diarrhea. Let's not visualize that, though.
Anyway, I tell you all this in case some part of it is useful for you. I don't know what's available to you down in that red state hell or what you can afford. And I know you're not eight years old. Still, it might be something for one of your helpers to look into, if none of you has already.
liz
my heart hurts for you.
I wish there were some way to offer more than cyber wishes. I'm so sorry you are going through such a hard time.
You do look marvelous in that hat btw.
I could only hope to have such style and substance in my normal/healthy life, let alone to have such amazing style and spirit going through what you're going through. I don't think I could muster up your courage for a minute and that includes courage to put it all "out there" in your blog. Wow. You are a class act, a one-of-a-kind amazing lady that I could only hope to emulate (don't make me look it up in the dictionary, I really hope it's in the right context)! Your pictures are stunningly beautiful, like you. Sappy, I know, but there it is. If this is what chemo looks like via your pictures, I'd raise my hand in a minute for a makeover. Your text, however, makes me not want to go there and I'm sorry for what you are going through every hour. I wish you the absolute best for every day. I hope it's a good day today. another susan
Dear Dr. Leda, I am shocked and just miserable to learn what you are going through, but deeply moved by your grace,humor and courage. Sharing your deeply personal and difficult experience is truly a gift and inspiration for us all. We met at the ARS convention in New Orleans, and I instantly became your groupie after your lecture. I have wondered what was up with your Regan Nursery column (sorely missed, by the way)and I can only say how sorry I am, and that you are in my thoughts and prayers and hope today is a better day than yesterday. Blessings and may all march well....Leann in Nashville
Elizabeth dear, I just heard about this. I want you to know that I hope with all my heart for your recovery. Your humor and wit about everything , even the worst is just heroic to me. I have always admired you. Much love from Pamela Temple (Mendocino Rose)
Honey, I didn't know about your struggle until this morning in Flame of all places (on The Well).
Coinkidinkally I have these dreads that would make a nifty dread wig if you know of a place I can give them to to send to you.
Jon Jackson (aka (jonj))
Jon Jackson! Are those well people flaming me now? Am I the new blueduck or something? Oh well. Happens. Flame them back for me, with style, and remind them that I'm still fairly muscular.
And pleeeeeze tell me you didn't cut off those waist length dreads.
Didn't cut them! Yet.
Your name came up because someone was ragging on barbaral for mentioning your blog. And I'm all WHAT???
I've been thinking about cutting them for a while. I have just seven of them left and pretty much simply wisps on the top of my head.
Besides darling, they'd look fantastic on you
Blame me; it was complicated. Doesn't matter.
Yeah, Liz, I saw your post above about being reluctant to accept help, which, I kind of figured. Would it help if I said (which is true) that i was spurred by the severe fucked-uppedness of the (not) health care system in this country? which, if it weren't for that, you and a fuckload of other people wouldn't be in this kind of situation?
if I'm already drawing more attention your way than you'd like, say the word.
But, well, i brought it up at the WELL because i thought, hey, the WELL! (which i'd been all but absent from and just sent in my resignation). hey, connection!
and, meanwhile: well, let me ask you, would you be opposed to a more targeted fundraising effort on your behalf in the blogosphere? i get that you loathe the idea of charity. and i have no idea how far this could go; i do know a couple of people on the bigger blogs who're interested.
but what i was thinking was, with the Biting Beaver business, it was to help her, but it also made sense you know as a System (i have developed a severe allergy to the word "patriarchy") blaming awareness-heightening. in that instance, the fucked-uppedness of the over the counter unavailability of emergency birth control. know what i'm saying?
people don't talk about the insurance crap nearly enough. i know it scares the living shite out of me; i have no insurance currently, and i've already had one melanoma scare.
i could totally see you with dreads.
p.s. like the handle Jon
I really do appreciate that people want to help. The thing is, the expenses are so astronomical all anybody can do is laugh until they cry. Or vice versa. My son has a paypal button for me on his blog, and it only says "New Shoes" because there's just no way donations can or even should begin to pay my medical expenses. Plus there are tricky legal and tax issues and stuff. But thanks for the offer.
The most helpful thing anybody can do at this point is fight to change the existing health care inequities. I'm not the only person who's uninsured, or under insured. Or stuck in a miserable job or marriage because they can't afford to walk away from the health insurance. It's a huge problem for a scary number of people. Talk about it. Scream about it. Fight to fix it. That would mean more to me than any kind of personal fund raiser. Does that make sense?
And Jon Jackson I have never forgiven you for that time ten years ago when you taught me how to make one dreadlock in my waist-length hair, and it ate the rest of my hair, and I had to shave it off and walk around with a fucking Donald Trump comb-over for three months. I still have that thing in a baggie somewhere.
The most helpful thing anybody can do at this point is fight to change the existing health care inequities. {...} Does that make sense?"
:)
Liz,
Not sure which chemo protocol you are taking, but sometimes it is helpful to suck on ice chips or popsicles during the infusions.
Best wishes,
Rose
Ahem. And the link to your son's blog is?
Liz: It does make sense.
Would you mind a bit more visibility, then, if I nominated your post about the health insurance for the next Carnival of Feminists, or something like that?
how does a dreadlock eat non-dreadlocked hair?...
Liz's kid's blog, the one with the PayPal button in the right sidebar for her "shoe fund," is Finnegan's Wake-Up Call, and you can find it at:
http://finwake.blogspot.com/
If you visit, you will no doubt discover what others have discovered, that besides providing a most helpful contribution portal, it's worth reading on its own merits.
Liz you must visit Sparkle*Matrix to get your authentic aristocratic name. And while you're there, get an authentic Indian. Take two why not.
An authentic Indian name. Well if you want an authentic Indian I'll do my best.
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