Pain Control and other fun stuff

To premedicate for chemotherapy I took pretty high doses of dexamethasone the night before and morning of treatments, as well as, getting it as one of the many coctail drugs during chemo day.  The way this effected me was first of all,  I could walk without pain!  Nice.  It also makes me real happy. Nice. It was given to alleviate nausea and other side effects after chemo. Nice.  If you ask my sister, Joyce, who has been there for me every step of the way and came with me to every chemo treatment, it also made me very talkative! Uh. Nice? Poor Joyce,  she got to listen to me go on and on and on about who knows what all day long. I would play on my laptop and maybe post on Facebook and I also got to bug some friends on email during the day.  Especially my two friends at the DA’s office in Tahoe City, Maggi and Heather.  One or both of them would be at their desk, and every third Thursday, would be nice enough to take time out of their busy day to keep up with me on email.

Lots of doctor appointments this week have added up to a lot to think about. I’m so tired of thinking about – IT.  

Tuesday I met with Dr Mones, the palliative care/hospice doctor and we went over my new pain medications and how they are working for me.  In the end he has upped my small dose of methadone (2.5mg)  to 4 times a day.  Apparently methadone will give you a good initial pain control boost quickly but then tapers off until you take more.  So take it more frequently.  It also takes a week or so to get it in your system to the work better – something like that.  One reason we are going the methadone route is because I have such a problem with opiates making me sick to my stomach.  And all the other fun side effects that go with them, dry mouth, constipation, etc.  So trying out this methadone thing sounds like a good idea to me.

Gabapentin is the nerve pain med.  He moved the dose of that up too and I just can’t tell one way or the other what it is doing for me. 

Funny story though -  he cut back my dose of dexamethasone.  Dr Mones initally had me take 4mg of dexamethasone (the steroid) in the morning and then another 2mg that afternoon.  Well by the time I got to the appointment with him yesterday I was wound put tight, spinning, spun.  I was talking, talking, talking.  Very different than our first visit when I was hurting, hurting, hurting and much more subdued.   So while he’s giving me his new instructions for medications, he says, “uh,  and you don’t need to take that second dose of dexamethasone in the afternoons.”   He couldn’t help cracking a little smile. Hah!  Joyce and I picked up on it right away.  She laughed and made a joke.  I acknowledged, with a laugh, and comment about how spun I get on that stuff.  It was funny.  We laughed over it when we had a chance again in the car. Joyce told me later she wasn’t sure during the office visit if I was going to let the doctor talk.  I’m still giggling at the whole situation. 

Just to top that day off, I came home and overdosed on methadone.  Okay well it wasn’t that bad but I just opened the bottle and took a whole pill without thinking when it should have been half. I tell you, I’m tired of thinking.  I thought it would put me down for a couple hours, but turned out to be just like if I had taken only the half pill. 

Wednesday was my appointment with the oncologist.  To begin he has made a clinical diagonosis that my anemia problem is from the Pure Red Blood Aplasia.  Meaning I don’t make red blood cells anymore and will need the transfusions.  The rest of the stuff in my blood I can make on my own. The treatment for it is to treat the Thymoma.  Ummmmm…we’ve done that.  The good thing about the ‘clinical diagnosis' is that he’s not going to suggest I have a bone marrow biopsy. Blood transfusions will probably be needed again, but I don't know how often yet,  Cancer Doc says come in if I think I need a transfusion (finally I am starting to recognize the symptoms) I can go into the cancer center for the blood check and then they will set me up.  

He has me set up to see a neurosugeon next week to talk about surgery to my spine. The goal on that would be pain control. There is also a soft tissue tumor  adjacent to my vertrebre that has been resistant to the chemotherapy treatment.   Sounds like that is the one giving the nerve so much problem and causing the pain.   So I will go to see what the Back Doc has to say.  A major surgery at this point?  Uummmmmm… maybe not for me, but  who knows if there is something less complicated and easy on me that they might put on the table. (no pun intended)

Thursday was appointment time with the Radiation Oncologist.  I already had the word from Dr Sharman that more radiation to my back was not advisable which is why he turned next to the surgeon.  But they wanted me to talk to the Rad Doc and hear what she had to say.  She was very nice and explained things very well to me.   The spot where the tumor is in my L3 vertrebre is below my spinal cord, which makes it a good thing and could take more radiation, but it is still very close to the nerve endings that come off the spinal cord and then they can move around to different positions, for example when lying down, so it’s too much of a chance.  She did give me what I think of as a desperate patient’s way to keep trying anything that will work,  and said she would do it if I wanted, but it wasn’t advisable.

To sum up the week with doctors,  symptom control is the main goal right now. PAIN control in my case and I’m working on it!  Still not quite there yet.  I may call the pain doc today and see if I can change something over the weekend. (but remember the methadone takes a week to start really working like it should and its only been about five days now)  I still have times between medication doses that I’m hurting probably more than I need to let myself.  In fact I keep getting lectures from the docs and nurses now about being up front and letting them know I hurt and if we need to change things and asking for what I need.  So much of my approach has been to wait and see what happens, but with the pain thing, when you wait and the control doesn’t happen then you’re behind the game!  I will learn.