This first post is a direct lift from an email I sent out after my first round of chemo. Rather than summing it up all over again, I thought I'd just cut-and-paste. You may have already read this one. So here it is, grammatical errors and all:
I know, I know! "What an uplifting subject line!" You don't have to read this if you don't want, but I thought I'd share my first experience with you. It's not sad, don't worry! (although there is a little crying in the beginning).
Just wanted to tell you how i am doing. the short answer is, so far so good.
At 5 a.m. on Friday, January 8th , I had to go in for a quick surgery where they installed a "port" into my upper right chest. It's basically like a small round metal disk that they bury under my skin just below the clavicle bone. it hooks internally right into my jugular vein, which is like as fat as a carrot. (who knew?) (by the way, I am glad none of us are doctors or you would probably be laughing at my elementary descriptions of body parts). the point of having a "port" is that every time they need to stick you with a needle (like for giving blood, or for getting chemotherapy treatments), they can access you from this port, in other words, stick the needle into this port, rather than finding a vein on your arm all the time. So i don't look like some strung-out junkie in an alley!
After I woke up from the surgery, i went over to the cancer institute, where they give chemo. Now i won't lie to you. I was doing a-ok til i saw the big double doors that said "cancer institute" and saw all the patients inside waiting to get their chemo treatments. I stopped dead in my tracks outside the door and refused to go in. i did not want any relationship with a place like this! i am not a sick person! places like that are for old people! i just want to go home and listen to some records and drink some coke! get me out of here, neil! so then i started to cry, cry like a baby, right there outside the elevators. neil whisked me off to the other side of the lobby by the window and hugged me and i cried til his tee shirt was covered with snot and tears. Then we went in. everyone in a cancer center is nice. they are so nice, it's crazy. nice like Grandma Yark nice.
i still cried for a while while i was sitting there, waiting to be seen. neil kept telling me (he is so wise), "this is good! this is the first time in this whole process we are on the OFFENSIVE. this is the first step to killing this stuff!" I still cried. And there was a woman sitting next to me, and she was reading a book OUT LOUD to the handicapped person next to her, and she finally stopped and asked everyone in the room, "oh, i'm sorry. I just realized that i'm reading out loud and this might be annoying. Am I bothering any of you?" and I instantly replied, "WELL, YOU'RE MAKING ME CRY."
(it was a bad joke)
So then they took us back. Along the way, they showed us the snack room (full of fresh sandwiches, fruits, puddings, drinks!) for all of us. Then they took me to my room. It's all very open, everyone else in there (patients included) seem so at ease with it all. You could definitely tell I was new to it all. Still resisting it. Others were high-fiving the nurses and hugging and smiling. I was like, "don't you people realize where we are? why are you all so happy!?"
The nurse explained everything she was going to do, and i continued to cry and snot. Here's the thing, though. It was super-easy. I just sat in a chair, Neil at my side, and they put an IV into my port. There were a series of about 5 medicines, each on in its own separate bag, and they gave them to me one by one. So the whole thing took 3.5 hours. The first bag was a vitamin. Then a steroid. Then some chemo medicine. Then two others. None of them hurt of made me feel badly or sick or funny at all. In fact, the steroid made me feel really great. And one of the others made me sleepy, so i even took a nap. We watched "They Royal Tenenbaums". Then it was time to go. They sent me home with one final medicine. It's called an "infuser". Which means, it's a medicine that I get over 48 hours, slowly, hooked into my port.
It's actually kind of funny. People who have to take some medicine home with them usually have to wear it in a black fanny pack. They told me, "so you'll get this fanny pack and you'll wear it for two days, then you come back in in 48 hours and we remove it. " And the only thing i could think to reply with was, "WAIT. YOU ARE TELLING ME I HAVE TO WEAR A BLACK FANNY PACK FOR TWO STRAIGHT DAYS, TWICE A MONTH?" Intolerable dorkiness. BUT, luckily, my infuser is just a plastic tube that hangs down inside my pantleg. And it's also kind of funny because it is shaped like a long thin tube, just inside my inseam, so when it sticks out, it looks like I am trying to play some sort of dirty joke. Something a gross guy would do.
The infuser runs out of medicine in 48 hours. Then i get it taken off, and I am free to live my life normally til 2 weeks later, when I do it all again. So here's my schedule: Chemofor several hours. Go home. Get infuser removed . Repeat every two weeks.
I got tired on day two and felt sort of weird, a little queasy, and very sluggish. But today i am fine. And the first day i felt great. So if those are as bad as my symptoms get, I'll take it!
I think in about 6 weeks they will do an initial scan to see how much of the godforsaken, shit-for-brains cancer has been obliterated already, and that will give them an idea of how long I have to go through this.
For the record, while i was in there, an awesome, kind, inspiring woman (age 39) came in to talk to me. She was diagnosed with colon cancer at age 37, and her lungs were 95% filled with it, too. (this may have sounded like the kiss of death, but she had remained optimistic). It took two rounds of chemo, but the treatment got her lungs cancer free and she is in remission now for 2 years. I have less cancer than that (I have a small-ish tumor in my lungs and a little spot in my liver). If she can get cured, so can I!
It's just going to be a long road ahead. And when you have a long road like that, the only way you can deal with it is to go step by step. (not think long term, because there are so many steps in between, it would blow your mind). But I REALLY, REALLY, REALLY want to live, so I plan to. All I need is loads of positive support from everyone, and a little help around the house. Both of which I have!
So, that's how I'm doing. Could be better, of course, but could also be worse. I don't even know that I'm going to lose my hair anymore. (the nurses seem to think I won't, the doc thinks yes... I need some clarification).
Please don't ever feel like you can't write to me about whatever is going on in your life-- I love hearing from you. i'm still the same old Shelly that I was, I've just taken a few punches. DOWN BUT NOT OUT!
Love you all,