Tuesday, June 26, 2007

Clear Scans!!

I met with Dr. Chesney today and the PET and CT scans from last week came back clear of any melanoma. What a relief! It wasn't an easy job to get that information from him: first he wanted to talk about interleukin-2 until I insisted that we talk about the scans first. Then he went over every abnormality that he saw in the scan and why it was meaningless until I finally asked whether or not there was any melanoma.
In their own special insurance company mentality, Anthem will not pay the cost of the medications if I do my own interleukin-2 injections at home. So rather than being able to get by with only two days off of work per cycle, it looks like I will have to take off from Tuesday afternoon through the rest of the week. I scheduled my first dacarbazine/interleukin-2 cycle for Tuesday July 24th. I think that will allow me to complete my scheduled six rounds of chemotherapy without interfering with any plans that I have made right now, assuming that I don't hit any delays along the way. My treatments will start on July 24th, August 21st, September 18th, October 16th, November 13th and December 11th and then I am done.
I had my final regular visit with Doctor McMasters today before I saw Dr. Chesney and he made a couple of points. He reiterated the fact that the melanoma cells that they found in the one lymph node were microscopic was a very good thing which should improve my five year survival numbers to something between the published 70% for stage 3a and the 90% for stage 1b. Dr. McMasters also said that it was a crap shoot between my three options of interferon, dacarbazine/interleukin and simply watch; any of the three was a reasonable choice. My chosen option of dacarbazine/interleukin-2 is intended to destroy any cancer cells lurking out there that were not detected by the CT/PET scan. The toxicity is relatively low for this course of treatment and it makes the most sense to me of my three options.
I stopped by work after my appointment and gave them my release to return to work form (about time). I talked to my boss about my vacation which had been scheduled for next Thursday and Friday, but we need to talk more about it. There is no way that I can get the whole last part of the week off (our plant runs 24/7) so I am going to try to get off next Wednesday and Thursday and then be back on Friday and available to help cover the weekend. I just know that it will be good to get back to work after five weeks.
Thank you very much for your prayers.

Sunday, June 24, 2007

Crud

It just occurred to me that this crud in my throat is going to screw up my plan of starting chemotherapy on Thursday. I see the oncologist on Tuesday and there is no way, even if I get a clean bill of health from the scans, that they will let me start chemotherapy if I am still fighting this thrush infection. I have been on the prescription for thrush for four days now and it hasn't cleared up, it is better but not good and I have less than two more days until I see the oncologist. All of these potholes along the path make the journey a lot more challenging.

Saturday, June 23, 2007

Progress

My throat is better, but still not good. I still have a fair amount of discomfort from the thrush infection. The pain isn't enough to keep me up at night, but I still know that it is there. I just hope that it keeps improving, but I have some concerns.
The site where my drain tube entered my back is nearly completely healed over. I haven't had more than just a spot of seepage on the gauze pad in the last three dressing changes, so I have moved from gauze pads to bandages. I tried cloth tape on the gauze pad a week or so ago and what a mistake that was, I now have a couple of good blisters from the tape. Give me a break.
The PET scan was supposed to drive my blood sugar way down for two days and I was to skip blood sugar medication until the third day, but I should have waited another day. I had to eat non-stop on Thursday to keep on top of my blood sugar. Have I ever mentioned how much I enjoy the side effects of these medications and treatments?
Next week will be a big week. I meet with Dr. McMasters and with Dr. Chesney both on Tuesday. I assume that this will be my final visit with Dr. McMasters. Dr. Chesney will give me the results of the scans from last week, so this will be an anxious few days. They will not pursue the prescribed course of treatment if any additional cancer shows up on the scans and I am not at all sure what I would do if the cancer has spread. Realistically, I am going to be alone the rest of my life and quality of life decisions may come earlier for me than they would for other people. On the positive side, there is not any reason to expect the cancer to have spread: it was in the sentinel lymph node only and not in the 17 other nodes that were biopsied. It is still kind of hard to be optomistic given the journey so far.
I assume that I will be released to go back to work on Tuesday, but then the whole question of the timing of chemotherapy comes into play. If I have my choice, I will start chemotherapy on Thursday June 28th. That will give me one day back at work before chemotherapy starts and then take Thursday and Friday off. Then the following week is the fourth of July week, where I have two days of vacation scheduled and a rafting trip the following weekend. I will have to have some serious discussions with my boss, I certainly can't afford to risk my employment right now.

Wednesday, June 20, 2007

Some new fun

My throat is getting really sore now, yesterday it was quite uncomfortable. I had a regularly scheduled appointment today with my family doctor and he told me that I have a thrush infection in my throat. Thrush is a yeast infection that was certainly caused by taking the high strength antibiotics for the MRSA infection at my lymph node drain. You've got to love it when the cure is also part of the problem.
Facing a life threatening illness is a big enough load all by itself. Combine that with the recurrent risk of losing your best friend along the way and this ride really sucks.

Monday, June 18, 2007

Scans

Today is PET and CT scans at Brown Cancer Center at 1:00 PM. They tell me that I have to eat low carbohydrate meals on Sunday to keep my blood sugar low and the I can eat (low carb of course) this morning before 7:00 AM. I get up at 6:00, eat breakfast and lay back down for an hour or so. I check my blood sugar after I get up and it is over 200 - cr** that is going to screw up this test. So on the treadmill I go and two miles later my blood sugar is back in an acceptable range.
My throat is getting sore today, I hope that I'm not coming down with a cold on top of everything else.
I am am Brown for three hours doing the test, about an hour in the actual scan room. It was tight quarters, but I survived the closeness. The worst part was having my arms strapped at my sides (tightly) since I still couldn't keep my left hand behind my head because of the recent surgery.

Friday, June 15, 2007

Be Gone Tube

My drain flow for the last two days has been 20 cc or less. The magic number is a drain flow of less than 30 cc's per day. I call Pam to schedule having the tube removed and have every expectation that she will give me a return to work form for next week. The tube removal was child's play, but then came the hitch. Pam thinks that I look 'peaked' and is not willing to allow me to return to work until Dr. McMasters returns on Tuesday June 26th!!! I have already been off work for four weeks (three without pay) and now am looking at an additional week.

Monday, June 11, 2007

Free at last!

Released from the hosptial! It was up in the air whether they were going to have to leave the PICC line up me and give me IV antibiotics at home or whether they could find an oral antibiotic. When Dr. McMasters comes in Monday morning he says that they have found an oral antibiotic, so he is going to have my PICC line removed. I ask specifically whether I should have the prescription filled at the hospital and he assures me that I won't have any problem at my neighborhood pharmacy. Laura gives me a ride home and after a little while, I head up to the pharmacy to fill my prescription.
Let the fun begin! The pharmacist tells me that Anthem BCBS won't fill my prescription because it required approval and that the doctors assistant Pam had already left for the day. The prescription of 20 pills was $1,500. She told me to go home and she would keep trying to get something worked out with the doctor's office. I am in full panic mode now. I realize that if I can't get this prescription filled I will have to be readmitted to the hospital and have the PICC line put back in. I returned Susan Cox's phone call and Garrison happened to pick up. As I described the nightmare to Garrison, he told me that he had the $1,500 and that I should go get me prescription. Talk about thinking outside the box! That suggestion make me realize that I could go buy two pills on the prescription ($155) which would give them all day tomorrow to work out the details rather than just an hour or less. Thank you Garrison! I buy my two pills and Pam works things out on Tuesday in less than half an hour! When I got home from the pharmacy, I just missed a phone call from the doctor's office, my voicemail message said that they were readmitting me to Norton's Hospital so they could continue the antibiotic. Talk about a close call!!

Friday, June 8, 2007

Infection & back to the hospital

Katie Caswell helped me out Thursday night changing the dressing on the wound where the tube entered my body. The gauze pad had a lot of red puss looking stuff on it and when I looked in the mirror there was about a 2" diameter red circle around the tube hole. Friday morning I call the home health nurse and ask her to come out right away and after her visit I call Dr. McMasters' office. His assistant Pam calls me back later and tells me that they are readmitting me to Norton's Hospital for the infection. It is about 7:30 PM before the hospital finally frees up a bed.
On arrival at Norton Hospital things are pretty low key until about 9:30 PM when someone finally gets around to reading the culture that Dr. McMasters took on Tuesday and then the pace quickens. They put me in semi-isolation for a staph infection (MRSA). Apparently I will always be placed in semi-isolation on future stays at Norton's Hospital. They put me on two high strength antibiotics and have to install a central (PICC) line in my right bicep on Saturday to prevent the antibiotic from blowing out my veins. This is going to be fun!

Tuesday, June 5, 2007

Meet your oncologist

Today is my first scheduled meeting with Dr. Miller to discuss my cancer treatment options. As it turns out, I actually meet with Dr. Jason Chesney, who is the director for clinical trials for Brown Cancer Center. I have been studying on interferon treatment like a madman for the last few weeks and after changing my mind a gazillion times have decided against pursuing interferon treatment. I found a paper on the internet summarizing the clinical trials that have been done with interferon for melanoma treatment theoncologist.alphamedpress.org/cgi/content/full/10/9/739 The bottom line of the research is that the interferon treatment will make you feel terrible for a year and doesn't prolong your life expectancy any! I print up the research and am ready to make them convince me of the value of interferon. When I pull out my research on Dr. Chesney, he tells me that he has seen it all, that they don't recommend interferon to anyone and that he wouldn't take it himself! Curveball!
He recommends a much less toxic six month treatment combining chemotherapy (dacarbazine) and injections of an immune system stimulant (interleukin-2) on a 28 day cycle. On day one you will get an IV with the chemotherapy and get an injection of interleukin-2 at Brown Cancer Center. Then on days 2, 3 & 4 you get injections of interleukin-2; either at the Brown Cancer Center or you can give them to yourself. Dr. Chesney recommends that you stay off of work all four days, but that you will feel fine for the remaining 24 days in the cycle. They classify the side affects of this treatment as a vacation compared to interferon. Without additional treatment there is a 25 to 35% chance of my melanoma recurring within the next five years and that the recurrent cancer is very difficult to treat. They contend that this treatment will lower those odds to a 15 to 20% chance of the cancer recurring in that same five year window. Dr. Chesney also tells me that I have a one in eight chance of developing a new melanoma, totally unrelated to the first cancer - I don't understand this at all.
I woke at at 2:00 this morning sick as a dog and couldn't go back to sleep. I was running a 101 degree fever in the morning. I also saw Dr. McMasters today and he prescribed a general antibiotic for the infection and took swabs of the site where the tube goes into me: oh my stars did that hurt!

Sunday, June 3, 2007

My sign from Chris

I am driving to church this morning and finally get my sign from Chris, although I really struggle to figure out what it means. As I am driving out of the subdivision, I come across what turns out to be a yucca plant with two vertical white flowering stems. The stem in the center is taller than the stem to the right and I immediately make the correlation to me and Chris. My first thought is that the sign means that I am going to be with Chris soon, but it could also mean that Chris is with me through this battle. When I get to church, Brian's sermon is titled 'Abracadabra' the magic of God's signs. Oh my stars! I cry all of the way through church.