Some Answers

Tuesday, my daughter visited me - a 400 mile trip. It was a good visit and I enjoyed it alot. She had told me that she had a meeting in the city and would come up after that, but she lied. She came up on her own. It was a good lie. We had most of the day together.

Wednesday I had my bone scan. I was injected with the radioactive stuff, went away for 3 hours, came back and they did it. It wasn't too bad and I did not glow in the dark.

Thursday, I noticed that my pain had decreased. Good. I could use less pain. I also went for a walk with my walker, but I'm still having problems walking straight - I have to hunch over. Without my walker, I can't walk more that 5 minutes without getting real tired, whether I walk with or without my cane, and I can walk without my cane.

Today I got a call from my doctor. The bone scan showed that I had healing fractures of my ribs - several of them. I also have one in my spine. The doctor called them compression fractures. Have no idea how I got them. We talked about my previous use of steroids and he believes that the steroids made my bones brittle and subject to fractures. Treatment is with Fosamax, which I've started on already. The problem is that it takes about 3 months before any affects begin, so for the next 2 1/2 months I'll have to be really careful. I'm also noticing that other than being sore from my walk, I have very little, if any, pain. Good. I'll be able to cut back on some of my pain meds, which may increase my energy levels.

This also expains how I broke my hip, probably from some little activity that just put pressure on the bone, and it broke. I'm getting referred to an endocrinologist to make sure that a hormone from one of my glands (parathyroid) is not causing this. Now I've got to find out who I can see about walking hunched over.

I'm upset about all this crap. I envision my life as a semi-invalid unable to do the things I like to do, and a burden to Arlene, basically housebound. But she's helpful. "we could go on these old folks tours" or stuff like that. Maybe. We'll have to see. In the meantime, I've got to focus on getting better. Whatever time I have left, and it could be years although it doesn't feel like it today, I will make a life with Arlene. While I may be limited in what I will be able to do, I will be able to do some things, and I will enjoy them with Arlene.

When it rains, It pours.

My son & his family visited this Sunday. Only 6 came as 1 grandson+ girlfriend didn't make the trip. Great visit and I'm glad they came. It made me feel good and they finally got a chance to see me since all my problems surfaced. I don't know what they expected, but they said I looked "normal" except for walking hunched over and maybe a little pale.

It seems that the urologist discovered I had a cancer on my bladder. He'll remove it on the 5th when I go in for surgery. The only difference now is that I'll have to have a catheter for a few days after surgery. Double YUK!! He doesn't appear too concerned about it. He thinks it's of the slow growing variety or he'd want it out now, and he thinks he can get it all using minimally invasive surgery. You can guess what that means and I'm glad I'll be out for the surgery.

My rheumatologist thinks that I have spinal stenosis and that's what's causing my pain. Wednesday I'm having a bone scan done to see if that's what I have. This is nuclear medicine and I have to drink some radioactive stuff and then they scan me 3 hours later. Hopefully, I'll have the results by the end of the week. If that's what I have, one of the fixes is surgery. Great!

I'm handling this all pretty well. I'm not upset and am handling this in a matter of fact mode. I just hope I'm not in denial. It's like I'm an old car and at the age where parts break down and you have to fix them. I just hope they don't run out of body parts. I hope none of this interfere's with my attending the reunion or I'll get a raft of shit from the guys.

Oh by the way, my lukemia is still stable. Its strange that the initial diagnosis that turned my life upside down is the one thing where I have yet to have a real problem. But once I get all this other crap taken care of, I will deal with the leukemia one way or another.

When will Shit stop happening

Saw the oncologist on Tuesday. The CMML is stable but I complained about the 24/7 pain on my side. He gave me a new regimin of pills to take, which seem to be working. Told me to see the rheumatologist, which I did on Wednesday. I may have a cracked rib according to the latest CT scan. How did I get that???? The rheumatologist is a good guy and when I saw him, the pain was almost gone - naturally. He ordered an Xray and a BONE SCAN to find out what is happening.

I could have killed the X-ray bitch. I went in with very little pain and came out almost unable to walk. "you have to move this way. Don't move. Sorry for your pain, but you have to turn this way. On your side." I almost went there alone, but Arlene came with me. She had to drive home, I couldn't. The bone scan is next week. Another uncomfortable test

Still constipated, but having minor successes. I know - it's just what you wanted to hear.

Had to sleep on the couch again. The pain from the x-ray bitch didn't stop till the next morning. Had sharp throbbing pains when I tried to sleep in bed.

My son was supposed to come up with the kids on Sunday. 8 people. No fuckin way. I hurt too bad. I told him to pick another weekend. I really wanted to see him and the grandkids, but I didn't want the grandkids to see me the way I am right now. 2 of the grandkids were bringing their girlfriends/boyfriends with them. No fuckin way. I feel bad about it, but that's the way it is. Don't worry kids, I'm not going to croak before you get to see me again.

I've been really bummed out about all this shit. When is it going to stop. I cry when no one is around. I cry when Arlene is around. I just want all this shit to stop happening so I can enjoy the rest of my life, no matter how long, with Arlene. I don't want her to see me in such pain and misery.

UPDATE: I talked to my son again after I published this blog. Since he's driving 400 miles and really wants to see me, I told him to come on up, but don't expect me to be the perfect host.
He's ok with that so I'll put up with the "friends". I feel better about this now.

Reunion Time

Each year some friends of mine and me have an annual reunion. There were originally 9 guys - one has since passed away from cancer. Another guy has prostrate cancer and of course there's me with leukemia. These are guys some of whom I've known since I was 10 years old and over 20 years ago we all decided it would be fun to have a reunion once a year where we go away for a weekend to a place somehow connected to our past. As teenagers, we were all close. These are the kind of friends you make as a kid that have no equal to the friends you make later in life. There isn't anything you can't say to them. In fact, if you don't "cap" on them, they want to know if you're ok. Best friends in the world. We're known as the "fokkers" One of the guys is a lawyer and he gets no end of shit from the rest of us. Me - I'm the guy in the upper right of the picture.

This year I was chosen to be in charge and get us a place, so I found a house on the Russian River with 8 beds, hot tub, etc. (At our age we keep saying it should be in a nursing home). It's important to get the separate beds, for as close as we are, we ain't sleepin with each other.

In the beginning, we actually went places, did stuff, not all of which was legal, and generally had a blast. As time moves on, we find ourselves spending more time sitting around and bullshitting and latetly bullshitting about our health. Yet, we all go away laughing and happy and looking forward to next year's reunion.

When I was diagnosed, one guy had already passed on and I emailed everyone else with an email titled "the 2nd to go"describing my condition and all related stuff. Last year the reunion was a bit more somber, but only for an hour or so until I got all the questions everyone had for me out of the way.

For me, this reunion is especially important now for it gives me a respite from all the crap
happening in my life. I am really looking forward to it.

Frustration.

I feel like I'm moving better today, but the pain on my sides continue. Beginning to feel more like a squeezing sensation. It is definetly screwing up my hip rehab. Tried contacting my doctors at Kaiser yesterday - can you believe it - they were all on vacation. Every friggin one of them except the orthopedist, and he won't deal with my side pain as its not part of the hip fracture. I don't want to see another doctor and have to start the explanations all over again, so I'll wait till next week when my oncologist is back and continue to pop pain pills. Maybe that's what I have to do - keep popping heavy duty pain pills. Every doc at Kaiser keeps asking me if I have enough pain pills. Maybe I could start a business on the side.

Got some of my lab results back from Monday. Platelets up a little (good) and monocytes down (good). Rest of the values continue to show that I'm stable with my CMML. Later this month I see my doc at UCSF and get the real skinny as to what's going on with me and my CMML. I keep having the feeling I'm going to beat this sucker, even if I have to have a mild cell stem transplant, and that's the expertise of the guy at UCSF. I know he wants me to start chemotherapy, but not until I'm done with my hip unless I become unstable.