Wednesday, February 24, 2010

Lots of Updates for You

All right dear friends - here we go - try to keep up! I told you I had 6 doctor visits Monday, well it turns out the day went so well we added an extra one on for a lucky 7. Most of you know I really like to play craps so I believe the number 7 holds special healing powers for me. There is a lot of detail in this posting so I suggest you take an occasional break when your eyes start glazing over.

First stop - the Trauma/surgery center to have my G-tube checked. ("G-tube" is the medical lingo for the type of feeding tube I have, because it is a Gastric tube as opposed to a Nasal tube which would guessed it - N-tube!) I was having trouble with leakage and small pieces of my "innards" hanging out. It was a simple fix by the Nurse Practitioner and we were on our way in about 20 minutes with instructions for how to maintain it.

Second stop - The Palliative Care Team. These are the people who work on the "soft" side of your disease. They are experts in pain management (remember I asked to see them) and they help with the psychological part of cancer. As far as pain I thought that I was being over medicated but it turns out that in their opinion I was way under medicated. After asking me a couple dozen questions about how I felt, how often I was taking meds, and how long the meds lasted when I took them they increased both my long term (patches) and short term (liquid) pain meds. I was surprised to say the least but you know what? This morning was the first time I got out of bed with minimal pain; it was like a miracle!!! Hallelujah!!! After that discussion I asked about driving and was surprised again. They said they had people taking much heavier doses of medications that were driving with no problems. Their opinion is that if I feel well enough; if I'm not drowsy or "loopy" that I should be able to drive. First off let me tell you that my decision not to drive has been self-imposed because of the articles in the paper about the doctor who rear-ended and killed a woman and her unborn child last year when he was juiced up on unprescribed pain meds. It turns out "unprescribed" is the key word that I did not know about It seems your body adapts to the level of medication in your body. Yes, you can reach a high enough level that you lose coordination and proper thought processes but that level is a lot higher than what I am on. So the bottom line is that they have no problem at all telling me that I am OK to drive with the caveat that every time my meds are increased I wait a week or so to see how the new levels affect me before I hop behind the wheel. Needless to say I AM THRILLED WITH THIS REVELATION! Not that I minded spending quality time in Jessie's vehicle with her but now I will have more independence and I will not have to worry about checking her schedule before booking my appointments. I will also be able to go to the store (Ultimate Truck - not the grocery store) when I feel well enough without having to arrange a ride with Jess or someone else. Look out employees - you may be seeing me a lot more often! The last thing I learned at this visit is that they require you to visit with one of their psychologists as part of their service. They just want to sit down and talk about how you are dealing with the mental aspects of your disease which I think is a great idea. As was evident in my rant a couple weeks ago sometimes this disease gets the better of you and you need to talk to someone. Better to talk to a professional than to someone without training when it comes to dealing with problems like that.

Next stop - the lab. This was an easy stop - just a needle in my arm to suck a couple vials of blood and we were on our way to.......

The Nutritionist. I lost about 5 pounds in the last month which is a no-no until I reach my target weight. I weighed in at 161 lbs, down from 166 last month; my target is about 175 lbs. Through the tube I have been consuming 2100 calories a day which is about 300 less than they want me to "eat". I was hoping that my reduced activity level would make up for that 300 calories but no dice. One can of the supplement I am using now is 350 calories so I need to add 1 can to my diet. Kind of a bummer because I was doing really well feeding myself 3 times a day with 2 cans and now when I add another can it will make me more bloated. I am trying to do 1/2 can at 2 different feeding times to spread it out a little.

On to the serious doctors - the fifth stop was the radiation oncologist to discuss the possibility of zapping some of the tumors in my hips and pelvis. Turns out they have plenty of room to work and so we are proceeding with that immediately. I returned to the hospital today for my setup appointment and will have my first treatment tomorrow already! I like it when things move along efficiently. They are planning on 10 treatments; 1 every weekday for 2 weeks. I am told there should be a minimal amount of side effects from this treatment and the pain relief should come quickly. Hallelujah again!

Stop number 6 - the Oncologist. This was a relatively short visit as well. My oncologist is pretty much the quarterback of my team of doctors, he makes recommendations on what course of treatment we want to pursue next. So I spent some time reviewing with him what happened at the earlier appointments I had that day, all of which seemed to make him happy. Then we talked about getting me back on Sorafenib. (I guess I lost some people when I started calling this drug Sorafenib. It is the same thing as Nexavar; Sorafenib is the generic name, Nexavar is the brand name. Sorry about that! I will try to be consistent from now on.) Anyway the issue with going back on Sorafenib is that it exacerbates bleeding and I am still having bleeding in my throat which we think was caused by the 3 throat dilations I had. So my oncologists assignment is to consult with the GI doctor who did the dilations to find out how to put an end to the bleeding. It may require another exploratory trip down my throat to to get the answer but if it does I want to get it done as soon as possible. I'll be ready to start the drug as soon as my radiation treatments are done in 2 weeks and we (the oncologist and I) are both getting tired of the delays. Sorafenib is the only drug that has given us results in shrinking and/or stabilizing the tumors and I have been off of it since I went in the hospital the week before Thanksgiving. As I told you my PET scan showed lots of new tumor activity so time is of the essence when it comes to getting back on this wonder-drug.

Last stop - lucky number 7 - was at the Day Hospital where they do infusions. While we were there and on a roll we decided to get my monthly Zometa infusion done. Zometa is the drug that adds calcium to my bones in order to strengthen them. It's only a 15 minute IV infusion so when we found out they had an opening we jumped on it.

Seven reasonably productive appointments in one day! (All right - I'll agree with you that the lab appointment is kind of a "gimme") I have to tell you that I think that is some kind of record and also tell you that I was pooped when I got home. I fell asleep in my chair pretty quick.

So I warned you there was a lot of detailed information packed in this posting! I thank you from the bottom of my heart for caring enough to read the whole thing. If you have any questions or comments you know how to get in touch with me. As always - thank you very much for your love and friendship. I appreciate every email, note, card, and prayer you send my way. I will keep you informed of any new happenings

May God Bless you all!

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