.... to come. I have been struggling with my computer posting pics, but I am having it fixed today ... I hope. I'll spare you more details. If you're anything like me, dealing with computer issues is only slightly better than reading about someone else dealing with computer issues.
CHEMO DAY - Yesterday I walked briskly to the train stop about 10:30 am. I was on my way to acupuncture prior to chemo. The librarian sent me the Hodgkin files I requested one day early (late yesterday night); I had printed off one of the many files she sent and was reading and walking; luckily I didn't have any gum or I surely would have run into a poll. When I reached the platform, my Aunt called me. She wanted to tell me that she had read my previous post about the radiation or no radiation dilemma and that she was feeling for me, thinking about me, and sending love our way.
I was grateful to hear from my aunt. First, her phone call took me out of mode. Eric and I have been getting our arm-chair PhD in Hodgkin Lymphoma for a few months now, and a break from it is sometimes helpful. Second, I think it was the first of several coincidences that occurred during my day; it reminded me of the powerful, and vast community network around me that I was unaware of prior to Hodgkin. The community network helps me to do things that I wouldn't ordinarily do on my own. I'm basically a lazy, procrastinative, long winded, exaggerator, with dry skin, and funny toes; I definitely need all the help I can get. Support (and not the type under wires generate) gives me confidence to find the right next step today and tomorrow. Writing for example .... doesn't happen without y'all giving me some umphhhhh. Anyway, let's move on.
While talking to my aunt, a man in the train car I was in was smoking ... not cool ... especially around someone like myself with potential lung toxicity from the bleomyacin (one of the chemo drugs I am taking). I had to run away quickly to another car with a trail of other patrons on my heals.
Alright alright... let's make some progress with this day or I am going to blogging until the cows come home and there isn't a lot of room for them here in Chicago. Acupuncture was relatively uneventful accept that my acupuncturist wanted to make a copy of the new article I was reading. The article does a good job explaining the details of the radiation no radiation debate. The fact that my acupuncturist was interested made me feel tingly inside. Here's the link to the article in case you want to give me even more of these tingles/goose bumps ... no pressure ... unless you want pressure .. then lots of pressure. Alright I get it... we don't have all day Kari.
http://asheducationbook.hematologylibrary.org/cgi/reprint/2010/1/108.pdf
Chemo #7 went as planned. We talked to the nurse about my nausea the Sat/Sun following Chemo #6. She said that the next step would be to add a drug called Emend to my regiment. It is an anti-nausea that would be administered with the rest of my chemo drugs intravenously. This isn't the first time I have heard of Emend. It seems to be a "savior" drug in the cancer community. However, I was reluctant because I'm doing pretty good overall with my treatment. Isn't less ... more? Eric and I decided that the upside was minimal, but the downside (having to "figure out" how another drug works and what side effects my body will create) was potentially more than minimal. We decided to hold off for this chemo treatment. If I'm really nauseous again, then we'll reconsider in two weeks.
Then, our Oncologist came for a visit. I was loopy (feeling kind of drunk as I do every chemo treatment) from the Zofran that they administer prior to the chemo drugs. Not many patients are affected by the Zofran, but even when given slower than normal, I still get a little loopy. I believe that Eric and our Nurse truly enjoy my loopiness. I'm a bit of a goofball during chemo. For example, we talked about the possible places the chemo drugs could come from. Shark Urine was my first guess. Our nurse thought Turtle tears. Eric thought Turtle sweat. Somewhere (or so Eric says) there is a gym of turtles running back and forth. They get sweatier with time considering they get skinnier and have to carry those super heavy shells. Poor turtles.
In comes our fearless doctor (his title is medical oncologist by the way) ... and Eric and I had all of our ducks in a row. Basically, it showed that we had graduated with arm-chair PhDs. We even had the medical textbook sitting out on Eric's lap in case there was any doubt. Our doc got the hint and pulled up a chair. It was super good to talk to him, and super good to have Eric there because like I said, I'm a little drunk during treatment and nauseous ... saying the right thing to a very smart man becomes ridiculously difficult. Eric did really well. Our questions were not focused on clinical studies, though they certainly were periphery. We needed the doctor to tell us how our case fit into the mix. Our arm-chair PhDs taught us very little about reading PET scans, CT scans, and blood work. To be honest, we never actually put the PET scan/CT scan DVDs into our computers. We asked very specific questions about my 9cm conglomerate of lymph nodes and whether that's better than one big node, we asked where I fit on the international prognostic factors scale, we asked if my PET was controversial (as the new studies are finding that many PETs are read as negative, but that they could possibly be read differently - he said that we have one of the least controversial PETs ... great news), we asked about getting a CT scan which can also help determine if the cancer is gone (I'm getting one in a few weeks; the doctor was thinking the same thing we were thinking). To sum it all up, we asked good questions. As Eric put it, we came away from the conversation feeling like we had asked all of the right questions, AND we earned that feeling by doing our homework and knowing what to ask.
My last question to our doc was twofold - what does he think my chances would be of a Hodgkin's cure if I had the radiation v. if I did not have the radiation. He said without hesitation that he thinks my chances are 90% either way.
Eric and I left feeling good about the conversation. I of course left feeling sick. ughhh... well, we're more than half way done no matter how you look at it. yeah!!!
As for today, I feel NAUSEOUS! ugh.
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