I saw more doctors today than I did all of last year, I think. One of the things I didn't know about cancer treatement is they you don't actually have a doctor, you have a team. There's the surgery team, the radiation team, and the chemo team. Before I started at Markey Cancer Center the surgeon was the lead, along with nurses, nurse practicioners, radiology techs, my family doctor. Once the surgery was finished, it was off to the big leagues with a medical oncologist, oncological nurses, med students, nutritionist, pharmacologist, on the chemo team. Then on the radiation side there's the radiological oncologist, physicists, nuclear medical technologists, associates, residents, med students, and the nurses and nurses assistants who weigh me, draw my blood, check my history, and generally make me feel better. I think I was touched by 15 different medical professionals today. They palpated my neck, drew blood, shined lights down my throat, I don't know what all else. Mostly, they encouraged me. We're almost half-way through, and I'm doing great.
The bad/good news is that my white blood cell count is a little down. That combined with the chills I've been experiencing had them concerned enough to postpone my chemo until Saturday. They were concerned that this might disrupt my independence day celebrations. Screw that. I'll celebrate when I can eat brats again. Meanwhile, it's back to the radiation table. The good news part of this equation is that they are eliminating my last chemo course. I'll be having only this one on Saturday, then the radioactive team will bring it on home.
I learned a few things about my throat today. What I have is called "mucosal denudation." Mucosa is the slippery skin inside your mouth. Well inside most of you, actually. Denudation means what it sounds like: stripping away. What's happening to my throat is that the skin is cooking away because of the radiation. It's as if I had sunburn on the inside. That's why my throat only hurts when I use it. Swallowing is like rubbing two sunburned arms together. They gave me some analgesic mouth rinse to use, and also some more antibiotics to try to get my blood counts back in order. I think that's all the new meds. It's a little hard to keep track. I'd be lost without Mrs P.
Someone from Tennessee sent me a lovely gift today, a CD that I'm enjoying right now. Trouble is, I don't recognize the address or the signature. I'd love to thank you personally, but if you'd rather not, I'm thanking you here.
magic mouthwash/magic swizzle" - :-) Numbs everything. Hope it works wonders for you Bob. Have they talked about Neupogen or Neulasta to get your WBCs back up? It is overwhelming in so many ways! My sister has been quite lucky to have "Dr little sister" in her family. I sometimes worry what they would be doing if I wasn't sitting in those appointments with her. I don't think we've ever left an appt without getting in the car and me hearing "what did he mean by..."
ReplyDeleteWe will definitely add you to our list of folks we will be riding for in August's Livestrong Challenge! Keep fighting and I hope that Brat is in the very near future!
~kim benson
are you allowed to take L Lysine for the throat? or is one more pill too much?
ReplyDeleteJohn had dangerously a low white blood cell count (300) and was put on daily injections of Neupogen for four days. That did the trick. He was checked this morning and it was up to 3500. Now the chemo treatment has begun again. It does seem silly to get it back up just to kills them off with the chemo. I think this must be a never ending vicious cycle,
ReplyDeleteRobyn
Kim,
ReplyDeleteTo be honest, I've just about lost track of all the pills. I know they added an antibiotic and the swish and swallow stuff to numb my throat, but I don't think there's anything specificly targeting my white blood cells. At Markey, they go out of their way to educate me through every step, but without Mrs P I don't know that anyone would be learning anything.
Molly,
ReplyDeleteI forget the name of the stuff. It has litacane in it, but it is a rinse that we mix up, not a pill. We have to grind up my pills in a slurry and shoot them into my PEG tube now. Swallowing is pretty dicey... I'm never sure if they've gone down or not.
Robyn,
ReplyDeleteI'm so glad John is back on track. Hope his fishing expedition was successful!
The WBC stuff is a shot - either Neuopogen as your friend said, which is given as daily injections (though not within 24 hrs of getting the chemo infusion) or Neulasta, which is given as a one-time injection within a 14-day period. You'd remember that one. :-) I can appreciate how overwhelming the meds all our. Again, if there is anything I can do to help explain things, I'm happy to put the Dr. of Pharmacology title to good use. :-)
ReplyDeleteYou are being treated at a great place, so I'm sure they are on top of the WBC issue and may give you one of those compounds if they think you need the added WBC help.
THe stuff with Lidocaine in it is usually called by pharmacists and doctors - magic mouthwash or magic swizzle. I wasn't making that up. :-) It will also have maybe benadryl, kaopectate or immodium. It is a nice mix of things and can be really helpful!
I liken the whole experience as - imagine going into the most important meeting of your life, and everyone is speaking French. And you don't. :-) A team who are good at explaining, or someone like me, can come in very handy. :-) Sounds like you have both a good team, and then your wife who is keeping on top of it. That is really helpful!
~kim