I am in week three of radiation therapy, and I'm really tired. I have three more weeks to go and should be finished with the treatment, but possibly not the side effects, by the day before Thanksgiving. Dr. BigHands, aka Dr. Funkinated, says I'm tired from the mitomycin chemo I received three weeks ago. I wonder if my chemo doctor would say it's from the radiation. Regardless of what it's from, I'm so tired that it's hard staying upright at times. I take a nap every day and get at least 8 hours of sleep, but nothing helps me feel rested and energized. So, I'll just wait it out. The bad news is I have another round of chemo starting 11/11, which probably won't help. I'm hoping it doesn't destroy the tiny hair growth that's been happening on my bald head.
Radiation exacerbates whatever issues you already have in the part of the body that gets radiated. Since my pelvic area is being blasted, I am now dealing with Pretty Boy Rhoid (again!), diarrhea, herpes, and vaginal itching that rivals any yeast infection I've ever had. Luckily, I have so many issues, that it's hard to concentrate on any single form of misery. It's kind of overwhelming. I take medication for some of the problems, but as soon as the problem appears to be cured, it crops up again. Dr. Funkinated told me to try Benadryl cream or Aquaphor for the vaginal itching, but the Benadryl burned and the Aquaphor only stained my underwear. Neither helped the itch. I resisted the urge to try a brillo pad. Today, he suggested hydrocortisone, which seems to be doing better than the other two.
Radiation itself is very easy to endure. Each day, I go to the cancer center, sign in, and wait for the radiation therapist to come get me. She walks me back to a big, cold room. There's a stretcher in the corner that looks like something they take skiers off the mountain on after they've had an accident. I want to stay off of that thing and since I don't ski, I think I'm safe. Once inside the room, I lie on my back on a hard, narrow table that has an apparatus with grooves for my legs to rest in, in order to stabilize them, so I can lie still. The two therapists then stand on either side of me and line me up so that the marks on my pelvic area are aligned perfectly with some grid they can see. One of them places a warm blanket on my chest and arms and hands me a rubber "doughnut" to hold on to, to stabilize my arms and hands. Every day, I forget to pull my pants down, and they have to remind me. Every day, I comment on how I keep forgetting to pull my pants down. I'm not the girl I used to be.
The therapists then leave the room and a big metal door shuts after them. They go to a safe place where they can watch without being zapped by the rays from the machine. Somehow, this is not comforting. I close my eyes and listen to the sounds of the machines and the oldies channel on the sound system. First they take an image or images of me which they compare to a prior image. To compensate for any differences in the two, there's a quick jerk of the table I'm lying on; this perfects the alignment based on the xray comparisons. After that, the radiation begins, signaled by a beep. I keep my eyes closed and don't think about what is happening; although yesterday, I told the machine to kill the cancer but leave my good parts alone and undamaged, assuming I still have some good parts.
After a few minutes, there's a beep, which signals the treatment is over. Then the therapists come back in and help me up. I'm pretty good about remembering to pull my pants back up, although they don't seem as concerned about that as I am. Then, I leave. One day a week, I see Dr. BigHands (unless I have issues that need to be addressed before the designated appointment day). At each visit, he asks if I have any questions or issues, and at some point, I have to drop my pants, and he examines the front and rear to see how my skin is holding up from the radiation - I have to bend over for the rear exam. I find myself wondering if little old ladies in their 80's are asked to do the same. Anyone who is modest or shy should never get cancer in the pelvic area unless they are prepared to make some personality changes.
And now, a few words about Dr. BigHands' nurse. I think it bodes well that Dr. BigHands' nurse is a kind and compassionate person who thinks and speaks highly of him. He and I enjoy great bantering at each visit, and we are competitive in our one upmanship, but we do agree on his nurse. I liked her immediately, and I met her before I met him. She's not afraid to be honest and kind and is free with her hugs and compliments. She is also a cancer survivor. I plan to join her club.
Thursday, October 31, 2013
Monday, October 14, 2013
Fanny pack, my ass!
At 11:30 AM today, my brother picked me up, so I could be on time for my noon appointment for my first round of mitomycin and 5FU - I think the 5 stands for the time I was finally able to leave the building and the FU is self explanatory. I waited in the waiting room until 2:00 PM, because they were running behind. It was more like crawling behind. So, I finally got back to the infusion room and they took my vitals which were high, in the case of my blood pressure. Then they moved me to a reclining chair in pod 2, I believe. Pod 2 had room for 4 cancer patients getting infused, or in my case, waiting to get infused. First the nurse accessed my port, which for some reason hurt worse than any other time. Then they ran some saline in me, checked the blood return from the port (which I did not want to hear about or witness), drew some blood to check my blood count levels, and finally got the machine to stop beeping. After a little while, our whole pod was full of happy cancer patients. I was actually one of the younger people in my pod, but the other three were men who, except for one, had more hair than I do. None were having as much fun as I, though.
So, they sent my blood off to the lab to get the results, then the computer system went down, and from then on, things had to be done manually. You can imagine how that might slow things down on a Monday that was already overbooked and running 3 hours behind. My brother and I were already getting tired from doing nothing. I had to quit using my computer when the system went down, so I just sat and waited. I tried to lie back in the recliner, but the angle of the probably expensive chairs was such that my neck had no support, so I abandoned the reclining idea. One of the many nurses who was running around was wearing heels - she was supposed to be working at a desk today - came around and did a tap dance and sang for us. I joined in on the chorus. We all clapped for her at the end. Another nurse wearing a top covered in a design of candy corn brought me some candy corn, which I love. She also showed us a doll that looked like an old witch that sang a song and moved when you touched her hand in the right spot. I used to do that when I was younger if the right guy came along.
Another nurse came and gave me a huge bag filled with things for the 5FU pump: a spill kit, which NO ONE has ever had to use, and something to put everything in on Friday when they pick up the fanny pack and de-access the port. She had me sign papers about the pump. I have no idea what they said, and she said some papers were missing, too. It doesn't matter what it says. I'm going to do the treatments, so why depress myself by reading that one side effect is that I may grown another asshole, and it, too, will have cancer. My brother and I were trying to adjust the strap of the fanny pack which contains the 5FU, and he announced that it was easier to make it smaller than it was to make it bigger. So I, of course, said, "Said the chorus girl to the Bishop." The nurse was glancing at us, and I told her we were brother and sister, so this type of bantering was in good fun, and not marital jabbing.
Finally, the mitomycin had been sent up from the pharmacy, and after giving me the pre-drugs to combat any side effects, they gave me 15 minutes of mitomycin chemotherapy. After that was over, I was hooked up to the fanny pack and told I could leave. So the actual treatment lasted about 25 minutes, but we were there for 5FU hours.
Which brings me to the real reason for this topic tonight. They kept telling me, "It's like a little fanny pack that you wear for 96 hours (4 days 24/7)." This fanny pack would fit King Kong's fanny. It's enormbutt. At the moment, it is filled with chemo drugs that must last until Friday at 5:00 PM, so it's rather heavy, too. There is no comfortable way to wear this monstrosity. At least it's black, so it goes with everything and looks smaller than it really is and it's so big that it makes my butt look smaller. At the moment, I am wearing it like a crossover purse. When I went on the doggy walk, I wore it like a fanny pack, but it threatened to strangle whatever might be emerging from the colostomy bag and was pulling my jeans down, too, so I've switched to the purse carrying method. The people (doctors, nurses, etc.) who told me about the "fanny pack" were so nonchalant when they talked about it, that I should have known they were hiding something. No one ever actually showed me one or even a picture of one, because they would have needed King Kong to model it. I asked the nurse today if the pump was loud. I think her response was an "I don't think it's loud." Well, most of the time, it's not loud, but every few minutes, it makes a whirring sound that should really help me sleep the next three nights. I have to lay it on the night stand while I sleep, and it has a long cord that goes from my port to the fanny pack. Of course, I have fears of pulling the cord out of the port, which hurt like hell going in, so I can only imagine the delight in dislodging it. And when I mentioned to the nurse how difficult showering would be, she said, "I just tell people to take baths." Great! How convenient. I'll be freezing from the waist up with my colostomy under water, my port above water, and my cold bald head above it all.
At least there are just 4 more days of baths and stress free sleep. Did I tell you that one of the self-care tips is "Get plenty of rest"? Another is "Avoid contact sports or activities that could cause injury." The person who would be injured is whoever makes contact with King Kong's fanny pack. Oh, and radiation starts tomorrow at 10:00 AM or 1:00 PM, depending on if they are overbooked, backed up, and the computers are down. Drop by anytime and say hi, if you're in the neighborhood. I'll be there.
So, they sent my blood off to the lab to get the results, then the computer system went down, and from then on, things had to be done manually. You can imagine how that might slow things down on a Monday that was already overbooked and running 3 hours behind. My brother and I were already getting tired from doing nothing. I had to quit using my computer when the system went down, so I just sat and waited. I tried to lie back in the recliner, but the angle of the probably expensive chairs was such that my neck had no support, so I abandoned the reclining idea. One of the many nurses who was running around was wearing heels - she was supposed to be working at a desk today - came around and did a tap dance and sang for us. I joined in on the chorus. We all clapped for her at the end. Another nurse wearing a top covered in a design of candy corn brought me some candy corn, which I love. She also showed us a doll that looked like an old witch that sang a song and moved when you touched her hand in the right spot. I used to do that when I was younger if the right guy came along.
Another nurse came and gave me a huge bag filled with things for the 5FU pump: a spill kit, which NO ONE has ever had to use, and something to put everything in on Friday when they pick up the fanny pack and de-access the port. She had me sign papers about the pump. I have no idea what they said, and she said some papers were missing, too. It doesn't matter what it says. I'm going to do the treatments, so why depress myself by reading that one side effect is that I may grown another asshole, and it, too, will have cancer. My brother and I were trying to adjust the strap of the fanny pack which contains the 5FU, and he announced that it was easier to make it smaller than it was to make it bigger. So I, of course, said, "Said the chorus girl to the Bishop." The nurse was glancing at us, and I told her we were brother and sister, so this type of bantering was in good fun, and not marital jabbing.
Finally, the mitomycin had been sent up from the pharmacy, and after giving me the pre-drugs to combat any side effects, they gave me 15 minutes of mitomycin chemotherapy. After that was over, I was hooked up to the fanny pack and told I could leave. So the actual treatment lasted about 25 minutes, but we were there for 5FU hours.
Which brings me to the real reason for this topic tonight. They kept telling me, "It's like a little fanny pack that you wear for 96 hours (4 days 24/7)." This fanny pack would fit King Kong's fanny. It's enormbutt. At the moment, it is filled with chemo drugs that must last until Friday at 5:00 PM, so it's rather heavy, too. There is no comfortable way to wear this monstrosity. At least it's black, so it goes with everything and looks smaller than it really is and it's so big that it makes my butt look smaller. At the moment, I am wearing it like a crossover purse. When I went on the doggy walk, I wore it like a fanny pack, but it threatened to strangle whatever might be emerging from the colostomy bag and was pulling my jeans down, too, so I've switched to the purse carrying method. The people (doctors, nurses, etc.) who told me about the "fanny pack" were so nonchalant when they talked about it, that I should have known they were hiding something. No one ever actually showed me one or even a picture of one, because they would have needed King Kong to model it. I asked the nurse today if the pump was loud. I think her response was an "I don't think it's loud." Well, most of the time, it's not loud, but every few minutes, it makes a whirring sound that should really help me sleep the next three nights. I have to lay it on the night stand while I sleep, and it has a long cord that goes from my port to the fanny pack. Of course, I have fears of pulling the cord out of the port, which hurt like hell going in, so I can only imagine the delight in dislodging it. And when I mentioned to the nurse how difficult showering would be, she said, "I just tell people to take baths." Great! How convenient. I'll be freezing from the waist up with my colostomy under water, my port above water, and my cold bald head above it all.
At least there are just 4 more days of baths and stress free sleep. Did I tell you that one of the self-care tips is "Get plenty of rest"? Another is "Avoid contact sports or activities that could cause injury." The person who would be injured is whoever makes contact with King Kong's fanny pack. Oh, and radiation starts tomorrow at 10:00 AM or 1:00 PM, depending on if they are overbooked, backed up, and the computers are down. Drop by anytime and say hi, if you're in the neighborhood. I'll be there.
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