A blog about cancer, motherhood, theatre, the politics of healthcare and life in general.
Wednesday, August 15, 2007
I just want to start off by saying, on behalf of all cancer patients out there, that chemotherapy truly sucks ass. Truly. I had a rough evening and night last night. Nauseated and uncomfortable and unable to find much relief from it. The phenergen pills for nausea don't really seem to do much for me. Except give me body spasms so I can't sleep. I lay there in my bed and had to, had to twitch. My arms twitched, my legs twitched, my neck too. I finally got up and twitched on the recliner for a bit, watched some infomercials and had a bowl of cereal. This was at about 1:00 this morning. I understand that the really expensive drugs that I am on, such as the Emend, have made chemo so much more bearable for many, many people. I felt queasy, car sick and on the verge of throwing up for hours. But I didn't spend 6 hours actually throwing up, thus forcing me into the ER for dehydration. So I shouldn't complain. But I can't be Miss Sunshine all the time. I spent the last week feeling so great and overcoming a huge blow to my self image - shaving my head - and it just really sucks to have to go back to being cancer girl.
Enough of that though, because I am feeling much better this morning. Weak and shaky and slow as molasses. But ok. I was much healthier going into this round, and I didn't have outpatient surgery the day before and the day after. So I am optimistic that after one night of chemo sickness, I can feel ok, but slow, until the Neulasta shot comes after me next week with the bone pain.
Chemo yesterday was once again pleasant. Andrea' came and got me at 8:30 and we met my Mom at the Cancer Center in Georgetown. I took up the same back corner I had last time. I like it back there. Plenty of room and I can survey the whole room while I get my infusion. It is a bit far to get to the bathroom from back there, though. And when they are pumping bag after bag of liquid into your veins, you have to get up and shuffle to the bathroom with your IV pole at least every 40 minutes or so. That was Mom's job. She would unplug me from the wall and walk me and my pole to the bathroom. Help me out a little in there and walk me and my shadow back to my seat. I wonder if the nurses steered me toward that spot on purpose because I am young and have my Mom with me. The infusion circle closest to the bathroom and nurses station gets filled with the elderly. I bet they want to keep those patients closer in case they need help. Makes sense to me. I can yell louder, get out of the chair by myself and have my own private nurse. Works for me, I like having my own corner. Though I think it would be nice to have another younger patient around. The other patients I see are nearly all at least 50ish, but even they are outnumbered by the elderly.
The infusion took a little more than half the time the last one did because they were able to infuse at a higher rate. The first time they take it really slow and check your blood pressure after 50cc's infuse and then increase the rate by increments of 50. This time they checked me after each 100cc's and increased the rate by 100.
First drug was again the Benadryl and Pepcid. And I was so high from it once again. It is only a little bit enjoyable to get high before they give you the chemo drugs. I told my nurse Jennifer that it must be their evil plan. Get us nice and high first then we won't complain so much about the chemo itself. She just kind of gave me a "you're so high" sort of a look and smiled. It is only fun til half the bag has been infused. Then I can't stand it. First half of the bag is "Woo woo! Party at the frat house!" The second half of the bag is freshman hazing at the frat house. "Please no more, I'm gonna be sick!" "You must finish the beer bong or you can't be in our club. Ah Ha Ha Ha Haaaaaa!" Ok. Sorry. You get the picture. Here is Jennifer administering the red chemo drug. It has to be hand infused and not drip from a bag. Not sure why. Next time I will ask.
After about an hour, the over-high wore off and I could really taste the awful poison of chemo being excreted into my saliva. You take saliva for granted. An invisible moist little friend who helps keep your mouth wet and helps break down food and is just a nice silent companion through life...until you run six bags of poison into your veins and choke him to death. I don't really feel my saliva build in my mouth unless I smell someone else's microwave popcorn or someone says 'cheesecake'. But the chemo drugs enter all cells in your body and when you make more saliva and it pours into you mouth as usual, you taste it. The most awful taste that is really hard to describe. And you can't get away from it. It is always there. It wears off a bit until you create more saliva and the taste renews itself with each wash of spit that enters your mouth. It really sucks.
And everything I eat and drink tastes funny. Gone bad. Food retains some remnant of what it is supposed to taste like, but most liquids just taste plain gross. Water is salty and I feel like I am tasting every mineral dissolved in it. Blech. Everything tastes really salty. Not sure why, but salty seems to be the overwhelming taste. I wonder if the chemo kills or warps your sweet taste buds and your salty and bitter taste buds survive the onslaught. Hmmm. Interesting question. I do find that chewing gum helps. Extra brand Cinnamon flavor does the best job. And wouldn't you know it? That is the hardest flavor to find. The Walgreen's by my house has at least 8 flavors of Extra both individual packs and in multi packs. But no Cinnamon. And I only have two sticks left! Must...find...Extra Cinnamon...gum...
For my birthday on Monday, my adoring husband bought me a very special gift; a pair of beautiful and classy earrings in my birthstone, Peridot. A very pretty light green color. One problem, however. I don't have pierced ears. Never have. I mentioned, after Andrea' shaved my head, that I should just get them pierced because I need some kind of adornment near my face and another way to feel pretty. Weellll, David heard me say that and the sweety called my bluff! When I opened the box and saw the earrings, something must have shown on my face because he was convinced I hated the gift. I so do not hate the gift. I love it. I love it that he heard me say something and acted on it. I love that he chose a pair of gorgeous earrings that are the perfect size and shape and color. That man has really excellent taste in clothing and jewelry, he seems to know what will look good on me and he doesn't hesitate to tell me something isn't flattering. I take him with me when I need to shop for an occasion dress. He is a lot of help. But I digress as usual. Where was I? Oh yes, earrings, no holes to put them in.
While we were at chemo, Andrea', Mom and I discussed the prospect. Is it safe for me to get them pierced while I have a compromised immune system and am not healing very quickly since my body is busy with other things? If it is ok, where to go. Certainly the 16 year old at the mall kiosk is not the appropriate practitioner for a cancer patient. Jennifer, my nurse, didn't object to me getting it done, so long as we can keep it clean and keep an eye out for infection. I think the fact that my mom is a nurse and is watching me like a hawk is in my favor. So Andrea' got out a Georgetown phone book to search for a place nearby that pierced ears. Turns out that Merle Norman on Leander Road, a mere mile from the Cancer Center, does ear piercing and seemed much better than going to the mall.
When my chemo infusion was done, we headed right over and just did it. I picked out a cute pair of CZ piercing studs and volunteered for a little more pain. Grrrrr! I can take it. Bring on the pain. I feel like I could be a sideshow act at the circus. "Step right up, one and all! See miraculous Cancer Girl withstand round after round of emotional and physical beating and never once cry Uncllllleeee!
It hurt a little but not much. Heh. What is ear piercing after Neulasta shot bone pain and natural childbirth - the two most painful things I have ever endured. So it is done. I can wear my new pretty Peridot earrings in about 4 to 6 weeks when my ears heal enough to take out the piercing studs.
People always want to know why I never pierced them before and it is an answer that always makes me laugh. I laugh because it is such a strong statement of who I was as a teenager. I was not allowed to get my ears pierced till I was 14 because that is when my older sister got it done and my folks wanted to be fair about it. At the time I was 9 years old and really wanted it done, but was secretly pleased I had an out because I was a bit afraid of the pain. And when I was 14 and was allowed to get it done whenever I wanted, I had turned into a kid that just had to be different. I was cynical and a smart ass. That came from being such a smart kid in a small town. I felt like I was smarter and more worldly than my peers, which may or may not be true. And I was tiny. At 14 I could have passed for 10 or 11. That didn't help. So whenever anyone asked me if I wanted to get my ears pierced I would scoff at them haughtily. "Hmph, why would I want to do that? I don't need any more holes in my head." Or "Why? So I can wear cute little pink fuzzy earrings to match my cute little fuzzy sweater? Who do you think I am?" I was Marsha Kysor. I wore clothing only in three colors - black, white and red. Red lipstick, pale base. Combat boots. I was making a profound statement and unpierced ears was a crucial part of my overall statement that I was different, special.
Well, now dammit, I am bald and sickish, different and special. The statement has changed a bit. I am now the almighty Cancer Girl and a bald head can't stop me from feeling pretty. I want to wear bright colors and yellow polka dotted sandals and wear pretty sparkly earrings. So be it. Thank you, David for calling my bluff and wielding the death blow to the cynical outsider teenager inside me. (I may still be sarcastic and cynical, but I at least have better reasons.)
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5 comments:
Wowza -- those earrings are byooteeful!! And welcome to the pierced ear club. Earrings really are an awful lot of fun. I never wear makeup any more, but when I want to look nice I put on a necklace and some earrings. Go figure!
(A little note: My stepdaughter doesn't have pierced ears, at age almost-16. She says it seems like too much of a hassle. Too much of a fuss. She doesn't wear jewelry. It's interesting to me b/c I couldn't WAIT to get my ears pierced. :)
Marsha, you rock!
Sweet studs, sexy! :-D
hi.im 15yrs old.i was diagnosed with osteosarcoma(bone cancer) when i was 13yrs old.i am now cancer free thankfully.but at the expense of losing my leg in the end no biggy.i know how u feel when i was on chemo and taking radiation i didnt sleep until 4 or 5 in the morning.i was on 3 different chemos and had fevers for almost a week.vomitting and pain i definitely know about.i had a tumor in my knee that grew twice its size every 30 days that is pain.at 1st one doc. told me it was arthritis but after a few weeks my mom saw it had to be more it ws unbearable pain.come to find out after a trip to jackson memorial hospital in miami,florida after my junior graduation i had cancer.my ears use to be pierced but they always turned out.but now i think im ready.my mom is scared (she has a right to)the cancer spread to my stomach but miraculosly it has disappeared docs. are baffled.i dont mind once it doesnt come back.people think just because you have cancer youre suppose to look like you have cancer but i refute that i dont agree im going on a diet and my mother forgets that i dont even have a leg people forget that ones missing.one good thing we can always get a jail free card with the"i have cancer"line it always works now i have another "i only have one leg"lol.i dont mine i dont sheild or hide myself i even go on the beach and i still wear sexy bathing suits while going in the water with crutches under my arm.so i am definitely going to show my mom this because i want my ears pierced.my advice while you probably dont need it is,dont think about your bad days and i know it is hard but you have to think positive and reminiscing about yesterday and how you use to be is not positive so just how you pierced your ears and got on with your life talk about positive stuff.oh yea and another good thing about chemo you have no pimples i kno.and i did not get rid of my cancer by staying in the US i went to mexico and people may call them bad things but believe me they are the best.speaking words of experience.the US had me filled up on gatorade and sugary juices dont know if you know this but they are bad for cancer patients.i almost died once and the doc.said it might be the steroids in the chemo.US docs.play with life so does the FTA.
and whole foods may be the best place to buy food from they are all natural no hormones.thanks for your blog keep em comin.do anything that makes you happy its a the best remedy!!!
p.s come to the bahamas.its great for relaxation and we have the biggest aquariam the world in atlantis its a great hotel.
---girl form nassau,bahamas
Hi there,
I was curious about continuing to wear pierced earrings while on chemo which is how I found your page. My drugs are different from yours though and it might depend on white count...I have had one round so far of Taxol and Carboplatin, and two weeks of oral Xeloda. The Taxol gave me the most vile arthralgia for two days but other than that, no complaints.
Anyway, you are a gorgeous young woman and I wish you the best. I am jealous that you got to keep your eyebrows! With my Taxol so it is adios to all body hair. Yes, there is an upside to that (legs and underarms) but the no eyebrow look does not suit me :)
Best wishes
CC in Calif
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