1 Down, 3 to go

Well, I survived the 1st of the 3 kyphoplasty operations, although there
were times I wondered if I would. L1 was done under vertebroplasty, L2 & L3
under kyphoplasty, where they use a baloon to expand the site. Today is 5
days after the procedure, and there is virtually no pain where the procedure
was performed. I've also noticed that I can walk a little straighter with no
pain, but my body, from old habits, wants to huntch, so I,ve got to be
conscious of that. I don't get the pain I used to get when trying to walk
straight.

The only problem I've had is that the procedure is done with me laying on my
stomach. I believe that sometime during the procedure, I cracked a rib on my
right side up high. The pain is pretty sharp, especially if I try to breathe
deeply. Some extra percocet has helped with that. In the past the fractures usually
heal in about 2 weeks or so. This one really scared me because of the pain I felt when I tried to breathe deeply.

I've noticed a slight improvement in the last 2
days. Hopefully, by turkey day, there will be further improvement, since we're going away to Arlene's son for the holiday.

My next procedure will be my parathyroidectamy scheduled for Friday 12/14,
followed by my 2nd kyphoplasty on 12/19, a Wednesday. This is only 5 days
apart, while ideally it should be a week. It's a little close, but because
of scheduling problems, it can't be helped. It should be ok as long as I
don't crack another rib. The 3rd kyphoplasty will be scheduled after the 2nd one is done.

Have a nice thanksgiving everyone. Be thankful and appreciative of what you have rather than sad because of the things you don't or no longer have.

Surgery

What a fool I was to think I would go 3 weeks without seeing a doctor. This week I have 2 doctor appointments - Tuesday with an interventional radiologist at Kaisers spine center in Oakland, and tomorrow with a psiatrist (thats a physical medicine doc) locally. But good news followed my 1st appt and I hope good news follows my appt tomorrow.

Tuesday was cool. I got to look at x-rays of my spine. Almost every vertebrae was broken via compression fracture. The doc was cool too. Our appt lasted 1 1/2 hours and I felt like I was his only patient. Dr T., the radioligist, explained everything about vertebroplasty/kyphoplasty. I will have a series of 3 operations during which he will repair 3 vertebrae per procedure. More is dangerous. There will be a minimum of 3 weeks between procedures. He's done about 400-500 of these, and never had a problem. My 1st procedure will be next Wednesday 11/14. We will stay in Oakland at a hotel the night before and the night after the procedure, which is done under a local anesthesia with no overnight stay in the hospital. With any luck, I can schedule this out to be completed no later than the 2nd week in January. Dr T will use a comination of the 2 procedures depending on the vertebrae and the fracture. He states that he has not seen the height gain with kyphoplasty described in the literature. He expects the procedures to reduce my pain at least by 75% if not more, and eliminate the hunching over when I walk. He also told me that the procedure may bring on more fractures, but they would deal with them.

The cement that they use starts out the consistancy of toothpaste, hardens after 5 minutes to the consistancy of clay, and then becomes solid like cement. The vertabrae can never be broken again. If they dig me up 200 years from now and examine my spine, they're going to wonder what the hell went on with me, with a cement spine.

After this is all over, Arlene and I will go away for a week. We both need it. I'm so happy that there is an end in sight to my misery.

A vacation

Unbelievable - 3 weeks without any doctor's appointments. I only have labs which can be done at my convenience. A vacation of sorts.

Friday, I had my MRI which will determine whether I can have the kyphoplasty operation. I should know this week. As usual, there was pain associated with the MRI, being in 1 position for 45 minutes without moving. Unfortunately, it carried over the rest of the day. BUT, I took Arlene to lunch after the procedure. I suprised her by suggesting it and it was nice.

At Kaiser, the sqweeky wheel gets the grease. I bitched to enough people about the long wait for the operation on my parathyroids. I got a call from the surgery scheduler on Thursday, stating she had an opening for the surgery in mid December. Of course, I accepted it as it was better than the end of January. I had a chance to talk to her about my situation, and she promised me that should there be a cancellation before then, she would contact me. That's great.

I've had some rib fractures due to the osteoporosis, and I had e-mailed my oncologist about them, just to let him know, since you basically don't treat rib fractures. I got a response on Thursday in which he actually cracked a joke and signed it with his first name only - no MD, etc. I thought that was great - here's a doc that actually can act like a human being. I had also seen him on Monday for my monthly appointment. He had promised to intercede on my behalf to try to get the parathyroid operation moved up. He also confirmed that the leukemia is still stable and that at this time he doesn't want to treat it. We'll see how that winds up when all this other stuff gets done.

The prior weekend, Arlene and I went to see our new granddaughter - a 122 mile trip one way.
We decided to check out property in a beach area about a half-hour away from them since I can't physically do the trip back and forth in 1 day. I figured it would double as a vacation home. Too expensive for us, even with "depressed prices" in the area. The visit itself was nice. I got to hold and feed her while I was there and she didn't even cry. Very nice.

We finally sent the hospital bed back. Yea - we got our family room back. I got a sleeping wedge to use on a regular bed. That worked real well for me. I also got a gel-foam pad that came with the hospital bed. Those 2 things help me sleep well in a regular bed.

A reunion buddie of mine keeps telling me to "keep the faith". I Am

The reunion

This past weekend was our annual reunion. I went Friday and came home Saturday night. Sleeping over was not the best for me. Sunday I was sore all over - like I overdid it.

The weekend was everything it was cracked up to be. I didn't get too many short jokes. 5 minutes after we were all there, we all talked about where it would be next year. Everyone was mellow. Saturday we went to the cliffs overlooking the beach. The conversations were never ending. A good time was had by all. The house left a little to be desired, but at least we were all under 1 roof.

This past week they discovered an adenoma - a benign tumor - on my one of my parathyroids (there are 4 glands). This has caused the excess parathyroid hormone in my blood which has leached the calcium from my bones giving me osteoporosis. They are going to schedule surgery for me in January- they're all booked up till then and my levels are not high enough to warrent bumping someone from the schedule. The surgery is done as an outpatient, which is nice. They remove the tumor and while I'm still open, check my parathyroid levels. If they return to normal, they close me up and send me home. If the levels are still high, they remove most of the other 3 glands, close me up and send me home.

At the same time, my oncologist found that they do kyphoplasty at their facility in Oakland, about 60 miles away. My oncologist sent a referrel and they've scheduled me for an MRI to see if I qualify medically. If I qualify medically, they will schedule me after I have my parathyroids done - it's best done when my blood calcium is stable. The kyphoplasty will restore most of my lost height and there is a 95% chance it will rid me of my pain. FINALLY TO BE FREE OF TAKING PAIN MEDS. I should also be able to walk straight up, not hunched.

This has been a good week for me.

My upcoming week

This morning, I got a call from one of my reunion buddies who lives in LA. Wanted to know how I was doing and my plans for the reunion. I told him. We BS'd for a while and then said goodby. I really felt good after the call- it got me thinking about friends and how good it is to have some, even if you only see them once a year. Especially friends you've known since you were a teen ager and with whom you've raised a little hell in your younger years. These are people you can say anything to, insult all the time, and can talk about the most intimate things.

I had a major accomplishment this morning. Arlene's computer is connected wirelessly to the internet and for the last month it's been giving us problems, shutting the connection unexpectedly. I tried a new wireless usb adaptor - same problem. So screw it, I decided to hardwire it to my dsl modem. I did it. Lots of moaning and groaning with back pain as I was working (its in another room). When done, I had to rest for a while. A month ago, there was no way I would ever try doing that. YEA FOR ME. The computer is working fine now.

I no longer use any kind of support around the house. No canes, no walkers. Just me and my two feet. What a good feeling that is. My back hurts after I walk in the house, but I expect that.
My doctor will find out where in Kaiser they do kyphoplasty. This will relieve the pain and restore some of the height I've lost. This will get done after my parathyroid surgery, which I'll find out about this wednesday.

The other day, I tried laying in our king size bed - painful if I lay straight on my back. My mind is working tho, and I think about a wedge pillow, which would approximate the angle of my hospital bed, where I sleep with no discomfort. I find several on the internet. I will order one next week and this should allow me to get rid of that hospital bed we have in our family room.

I'm looking forward to the coming week - more medical answers and my reunion.

My UCSF Visit

Saw my UCSF oncologist on Friday. He concurred with my Kaiser oncologist that my CMML was the least of my problems right now as it is still under control and not showing any signs of progression. Good.

He told me about a procedure called kyphoplasty which can restore most of the lost height that I have suffered due to my compression fractures in my spine. It's a minimally invasive procedure.
Don't know if Kaiser pays for it, but will look into it when the other stuff gets done.

My parathyroid scan is scheduled for next monday, the 8th. It's another procedure that involves injection of radioactive stuff and a series of x-rays. After that is done, I'll be scheduled for surgery if that's the decision based on the results. My endocrinologist keeps telling me that I have the option of NOT doing the surgery. How can that be an option if my bones continue to break due to excessive parathyroid hormone in my body????? Do they want me to lose another 4 to 6 inches in height????

I need to make a decision regarding my upcoming reunion. I will probably just go for 1 day on
Saturday. I'll be hampered by my inability to walk normally - and I start physical therapy on Monday - but I'll still be able to see everyone and yes, they'll squeeze 2 days of crap that they'll give me into 1 day.

I still believe I'm going to get thru all this crap that's happened to me to where my only problem will be the leukemia.

Some Answers

"Right now, the leukemia is the least of your concerns". That's a direct quote from my oncologist at Kaiser.
I saw the endocrinologist yesterday, and basically she told me that I need surgery on my parathyroids. My hormone level is high and my calcium level is high normal. The parathyroid hormone is basically a calcium regulator and too much of the hormone will cause your bones to lose calcium and become weak. That is what is happened to me and why I fractured my hip and have had compression fractures in my ribs and spine. She needs to do 2 more tests - 24 hour urine and parathyroid scan - to confirm the diagnosis, then hi ho, hi ho, it's off to the hospital I go. At least I have an answer. It's a "short surgery" involving an overnight stay. I also found out that I HAVE SHRUNK 4 INCHES in the last 7 months. Amazing. Arlene and I are the same height. I never knew I would become a little person. My BMI shot up to over 28 from 25. I've gone from 165 to 158 lbs, but I guess I'll have to lose some weight now too.

I also saw my oncologist yesterday. The bone marrow biopsy shows very little change from the previous biopsy. The leukemia is stable and the least of my concerns. He also cut my labs down to every 2 weeks instead of every week. YEA - 1 less trip to kaiser. He also urged me to get the parathyroid surgery in case I had any doubts. During the exam, while checking my spleen, I felt a sharp pain from my ribs and I yelled out. I think I scared the shit out of the doctor. I hope he didn't cause a fracture on a rib - he says no or I would continue to feel pain. Guess what - today I'm feeling pain in the area. I'll let him know.

This morning I saw the orthpedist. I'm done with him - the hip fracture has healed nicely, even though I still can't walk normally without pain in my back. He says to continue my walking exercise to strengthen the area and not to worry about hunching over. I will do that as well as work with physical therapy. I can walk a little bit without any help - cane, walker, etc, but then I get pain in my back and hunch over. This will take time to work out.

I did see the report on my bladder cancer - non-invasive and low grade was how it was described. I have to see if there's another way to monitor me other than sticking a scope up my dick every 3 months.

All in all, I'm feeling pretty positive about what I've learned. Now I'll see my oncologist at UCSF, confirm everything my kaiser doc told me, and continue with my life, enjoying the things that I have and the loving people around me.

My new granddaughter

Went to visit my new granddaughter on Tuesday. I drove there and found the drive to be long, so Arlene drove home. We stayed later than I had wanted to stay and didn't get home till 11 PM - that's late for me.

The visit was great. She is soooooo cute. I held her for quite a while and she didn't cry. Maybe I'm less scary as I get older. She's just a month old, so I didn't expect her to do magic tricks or some other stuff, but there she was looking around, being a 1 month old baby. Then they grow up and become teenagers. Oh well.

I appreciate all the comments on the c-pap machine. I doubt that I'll ever use it, but it's there just in case.

Had an appt with my primary care doctor on monday as a follow up to my hospital stay. Discussed my fears about going to sleep and not waking up. Was told that there is no medical reason to fear not waking up. I am working on that and affirming to myself that I will wake up in the morning when I go to sleep. Last night I finally got a good night's sleep and hope that this pattern continues. And today I will walk.

Next week will be a busy one for me with 4 doctor appointments - endocrinologist, oncologist, orthopedist, and oncologist at UCSF. I hope to get some answers regarding my osteoporosis and brittle bones, my fractured hip, and my leukemia.

The c-pap machine sucks

The c-pap machine sucks. There's no other way to put it. I tried it 3 times last night and each time I had to pull the mask off. I had this tremendous feeling of panic with the mask on my face blowing air up my nose constantly. I had to fight to exhale - imagine a battle between my exhaled air and the c-pap air fighting to see who would win. All it did was panic me. I may try it again. Or not.

The whole reason for the machine was to make sure I would continue to breathe throughout the night. When in the hospital, while all doped up on opiates, I did have problems breathing. I blame that on the opiates. Once I cut back on the opiates, I had no problems I was aware of. The nurses who monitored my vitals said my oxygen saturation at night was in the low to mid 90's - a good value - and they couldn't understand why I needed the machine.

Last night, after I pulled the mask off, I didn't want to go to sleep. I was afraid of dying in my sleep, a feeling I did not have before the c-pap machine. Arlene finally took the machine and put it out of sight. Good. I hate the machine more for what it represents to me than what it actually is. I watched TV till I finally conked out and went to sleep. I also made a decision. I will no longer takes opiates before I go to sleep. I will also start using the nasal strips to help me get more air.

I've also decided to resume my walking. Because of the pain in my groin and the bladder operation, I stopped walking. I feel like I've been set back about 6 weeks and I refuse to accept that, so my walking resumes. I hope it also improves my attitude.

Tuesday, we're going to visit my new granddaughter. It's about a 2 hour drive and I'm going to do the driving, which will be good for me. I look forward to that as taking another step. It will also help me get out of this "poor me" funk I seem to be stuck in.

C-Pap Machine

Upon release from the hospital, my hospital doc ordered a c-pap machine for me. This machine helps you breathe if you have sleep apnea, although it's a pain in the ass. (Maybe I'm putting it on at the wrong end). We picked it up yesterday, although they were out of "pillows" to use it in my nose. The pillows are coming.

Apparantly , the 1st night at the hospital, my breathing had stopped and the doc was afraid that without the machine, I might stop breathing and die in my sleep. That 1st night I was all doped up on opiates, which can affect your breathing, while the other nights, I had no problems. I will try to use it when the pillows come - I didn't want the mask, which can cover your face.

This is a $1200 item that I didn't especially want, which was paid for by my insurance and medicare. Imagine if I had wanted it. How many of you think the insurance would have paid for it??

I'm feeling better every day. My hospital bed is very comfortable, but my goal is to get into my old bed by the 1st of October. I'm looking forward to my reunion in October and in November, we're going to rent a house by the beach for a week just to get away from all the crap around here - no docs, lab tests, etc.

I want to thank each of you for all your kind thoughts and prayers, whether on my blog or Arlene's blog. I've had a chance to go thru and read them all and the idea behind each of them made me feel kind of "mushy". Thank you

The Cath is Out

Had my post-op meeting with my urologist today. He removed the catheter. He
also confirmed that the cancer I had, if one was to have cancer, was the
best kind to have. It was superficial and just on top of the bladder walls,
but not in the walls of the bladder. It was a non-invasive slow growing type
of cancer. And he confirmed that he did get it all.

This type of cancer tends to reoccur, so I will have to have checkups every
3 months to begin with. If no cancer is found, the checkups can be extended
to every 6 months. This is another one of those great visual exams where they insert a
cystoscope into the bladder and have a look-see. Great fun.

The bone marrow biopsy results are also back. No significant changes, which
means that the CMML - Leukemia - is still stable. YEA!!! At the end of the month, I'll meet with my Doc at UCSF and he'll review everything with me.

While in the hospital, one of the docs there worked at the Fred Hutchinson
Center in Seattle. He told me that when there were platelet donors there, he
always had them drink a beer or 2 before donating platelets because it
brings the platelet level up. Non-alcoholic beer also works, which is what
I'm now doing as alcoholic beer can bring on a gout attack. Too bad. I
wonder if I can write it off as a medical expense?
That might raise a red flag at the IRS.

I'm beginning to get a real positive feeling about the next 12 months. Yea, I got alot of crap I have to deal with - weak bones, parathyroid problems, broken but healing hips, pain, etc-
but I feel that these are just bumps in the road, and I will continue to increase the quality of my life. I want to do something really nice for Arlene and I'll have to figure that out.

The catheter comes out on Monday

MONDAY - the catheter comes out - yea. I wonder if I get to keep it as a souvenier.
I've learned some interesting stuff. I drain my catheter bag into a male uninal for convenience. It helps if you open the urinal up when you drain, otherwise, you know where the stuff goes. It happened once and only once.

A friend of mine kept telling me to keep the faith. I think about that and it really helps.

Arlene tells me that my attitude has really improved. Wait till she sees the improvement when the catheter comes out.

My new bed is comfortable, but at some point it'll have to go and I'll be back in our bed. I look forward to that.

When I was in the hospital for the pain, both my kids came up. My daughter stayed with me all night at the hospital for 3 nights. I must have done something right in raising her. She didn't want me to be alone

I'm looking forward to improving my quality of life and spending time with Arlene.

Bladder cancer surgery

Yesterday, I underwent successful surgery for my bladder cancer:

1. The cancer was superficial - stage 0. It sat on my bladder and was
not involved with the bladder walls
2.The doctor believes he got all of it since it was superficial.
3. He believes it is the slow growing non aggressive type of cancer.
Pathology will have to confirm, but based on his experience, that's what he
believes. surgery was thru the urethra. Was I glad I was out.

I have a catheter in me which comes out on Monday. Miserable. I'll have to
undergoe checkups every 3 to 6 months since this cancer does tend to return,
but right now everything looks favorable. The surgery was done as an
outpatient. I was really scared about this one.

On the 29th, I was put in the hospital for uncontrolable pain. I was there
for 4 days till they were able to control the pain and while I was there I
developed a bladder infection. That was just great. At one point I wondered
if I was going to die there, but I keep remembering to keep the faith, as
Bruce is always saying. My kids both flew up from LA and I guess that's what
scared me. Bedpans, urinals etc - the whole 9 yards. ugh!!!

Both these hospital episodes scared the shit out of me and I thought I was going to die. I hate hospitals. If my diseases progress and I die, so be it, but at least leave me wth dignity and allow me what little time I may have to enjoy my family, including my new granddaughter "Maddy"

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.

Another Step Forward.

Yesterday, I took another FEW steps forward. I basically discarded my walker for the day. Spent the whole day walking on my own 2 feet, with a little help from my cane on occasion. It would be the perfect time to race me as my speed rivaled that of a turtle, but I would finish the race.
Arlene and I also went out to dinner at our favorite place in Santa Rosa. This was the 1st time since I fractured my hip. No cooking for you tonight, Arlene. I had a hamburger, made with range fed beef, no antibiotics, hormones, etc. I don't think I've ever enjoyed a burger more. Of course, I drove. Man, did that feel good.
Today, I'm paying for it. I'm sore, I hurt, my back hurts, but I'm continuing NOT to use the walker. Got my labs done, did some shopping, even did a few chores around the house. I've got to keep this up, even with the extra pain. I've put my upcoming surgery out of my mind for now and feel good about myself.
I heard the news that Bill Walsh, the legendary coach of the SF 49ers, a team I've followed since high school, died today and that saddened me. He had leukemia also, not the same kind as I do and was under treatment for 3 years.
So far, I've done a good job of getting rid of the poor me bullshit.

More shit

The pain on my sides is really getting to me, so I see my prmary care doctor at Kaiser on Thursday. This is the guy that gets things moving, and he schedules a CT scan for me that afternoon. He calls me that night with the results: It looks like you have kidney stones and there's something on your bladder. He'll refer me to a urologist.

Next morning I get a call from a urologist to schedule an appt that day. I schedule it for late afternoon. He's concerned about the thing on my bladder - the kidney stones are too small to cause any pain and they'll probably be passed. He does an endoscopy and tells me there's a "thing" on my bladder about the size of a fingernail, he doesn't know what it is, and it needs to come out to see if it's malignant. After hasseling with the date, we schedule it for Sept 5th. It's a 1 day thing- in in the AM, surgery, than leave in the afternoon. I'm nervous about the surgery and the fact that i have thrombocytopenia and I could bleed to death, although they can boost my platelets before surgery. I want to be knocked out for this one.

I'm pissed and upset about this. Why is all this shit happening to me? Who did I piss off when I was young. I'm just starting to recover from the hip and this shit happens. Why, Why, Why??? I'm beginning to feel it's just not worth it and why go on? Is this going to be the rest of my life?
Who needs a life of pain and suffering? What's next after this?

I've got to get out of this poor me bullshit. I have things to look forward to. I talk to Arlene last night. She tells me that when I told her "look what you have to put up with", it really made her angry. We talk more, a no sympathy kind of talk. I feel better.

This morning, she tells me that last night towards the end of our talk, I sound as strong as I've every sounded. I hope she's right. I need to be strong now.

The painful road to recovery

It's Monday, time for my weekly blood draw. Like last monday, I drive there by myself. I also have errands to do after - by myself.
It's also the first day of physical therapy. My physical therapist is Rachel, who is a MPT. I was concerned prior to the appt that I'd get someone who I wouldn't like, and I wanted a woman because I think I relate better to women. I like Rachel and I think we'll work well together. She tells me that she thinks my orthopedist doesn't like physical therapy and they don't get very many referrels from him. She gives me some exercises to start - small ones so as not to push me. I am encouraged, but I still have back pain and pain on my sides. There is nothing in the way I feel or the way I walk that makes me think that I won't recover fully or almost fully.
Sunday, I was in a bit of a depressive mood. Arlene was doing work outside - stuff I would normally do like cleaning and weeding. When she came in, I started crying. I was feeling sorry for myself and I told her to "look what you have to put up with - an old and helpless man." I don't remember her response except that it was a loving response. Thank you, Arlene. I needed that.
Friday I had ultrasound done on my liver and spleen to see if they were enlarged and causing me the pain on my sides. Arlene kept calling them sonograms. No Arlene, they are not sonograms and I am not pregnant. They all came back negative - spleen slightly enlarged but the same size as last September. Liver, normal. No stones anywhere - thank goodness. I won't have to worry about pissing rocks. Also no cause of my pain on my sides.
Finding the cause of my pain will be the next big push. In the meantime, Percocet and Norco will keep the pain under some control

Another First

Yea for me. Today I had labs done at Kaiser, like I do every Monday. I drove there by myself - No Arlene in the car. I had no problems. I also ran errands, like getting the car washed, getting a new toilet seat (I broke the old one-don't ask how), picking up a few items at Trader Joe's. I was gone for 2 1/2 hours. Arlene, for the 1st time in over 3 months, had the house all to herself for that time. WITHOUT ME.
When I got back, I was tired. Very tired. Arlene made me lunch. Good lunch - a reward for my morning efforts. I ate the lunch and turned on the TV, and promptly fell asleep.
I decided that I wanted physical therapy, even though my orthopedist thinks its a waste of time. I want it if for no other reason than I want someone to monitor me over the next 3 months since I don't see him for almost 3 months and I want to make sure what I'm doing is correct. I requested the therapist that worked with me over 5 years ago when I broke my arm near the shoulder. I credit her with me regaining full use of that arm again. If he doesn't give me a referral, I will go to war over it.
Lab results came in while writing this blog. Values are still stable although platelets are slightly down. I'll screw around with the herbals some more to help get them up.
UPDATE- I checked my e-mail after I published this blog, and there was a note from my orthopedist approving the referrel to physical therapy. Man- he got back to me fast. I sent him the e-mail 40 minutes ago and didn't expect a response for at least a day. I guess I won't have to go to war.

Friday the 13th

I'm not superstitious, but yesterday was Friday the 13th. We have a black cat and it crossed in front of me several times during the day, and I survived. But yesterday was a good day for me. I generally felt good, I took my usual walk, and for the 1st time, I went out to the back of our back yard (we live on a hilly lot, and the back yard is up a little hill) to lay on a chaise lounge to read. Arlene was on a hammock we have back there and she was up there too, also reading. The critters finally drove us back in the house, but it was a first. Going back down the hill made me a little nervous, but I made it with no problems.
I just came back from my walk today and again there's a first. I used my walker for balance and did not put weight on it when I walked. (ok, maybe just a little bit, but not anyware near what I had been doing). I also walked at my normal speed for about 20 or 30 feet just holding on to Arlene's handand no walker. That was ok, but it tired me out. I'll be doing more of that. I also concentrated on trying to walk straight, and not slightly hunched over as I had been doing with the walker. That gived me a sore back, but it's something I need to continue to do.
I am still afraid that I won't be "normal" when I'm fully healed, but I'll continue to work at it.

Doctors Visits

Thursday, I saw my oncologist at Kaiser and yesterday I saw my orthpedist at Kaiser. The news was encouraging on both ends.
My oncologist basically stated that I was still stable and he did not want to start treatment with Dacogen. I agreed with that. My platelet level was down again to 44 - low but not dangerously low. I'm going to cut out one of my herbals to see if that does anything. I discussed the pain in my sides that I have been having and he's going to ultrasound my spleen & liver to see if they are enlarged. He thinks the spleen may be, but doesn't know about the liver.

The orthopedist told me that I was really lucky. My break in the bone was clear through, not a partial fracture, but the bone stayed in place, and eventually started healing on its own. He stated that many people after these fractures, even with surgury to pin both ends together, still don't heal properly. The healing is continuing as it should, and he wants me to increase my walking - both in speed and time to build up endurance. I do tire after I walk and this morning I walked faster and a slightly longer distance, and got tired. He would not predict whether I would return to pre-break normalcy, but my feeling is that I will or at least be close to normal. I showed him how I walk without any support and he noticed a limp. "Get rid of the limp" he told me. You do this by putting more pressure on the limping side. Physical therapy is not necessary and he'll see me in 3 months. Oh, bye the way, I drove to and from the appointment.
My ability to drive will give some of the freedom that Arlene gave up to take care of me back to her. That and the ability to regain some of the freedom I lost makes me feel real good. All of this and the lack of any real severe pain makes me feel less vulnerable to the CMML, although I know that will change. I'm going to enjoy this feeling while I can.

The 1st drive.

This morning I went for my usual 15 minute exercise walk with Arlene. For me to walk, we drive to a flat area (where I live, it's hilly) about a mile away. While walking, I mention to Arlene that next Monday, I hope the orthopedist tells me it's ok to drive. When we get back to the car, Arlene asks me if I want to drive home, if I feel up to it. I don't hesitate to say YES. I get in the car and I'm nervous, but I start the car and drive home with no problems. I ask Arlene how I did. Fine, she said. I felt fine doing it with no problems. I AM SO STOKED. Monday, I'm going to drive to the doctors office with Arlene in the passenger seat monitoring me. Now, if he only gives me more good news.
The feeling that soon I may no longer feel trapped in my house is great. My mood is great, my attitude is great. There are no words to describe it. A burden has been lifted and I love everybody.

More steps

Yesterday, July 4th, I took a big step. Arlene and I went to the movies. We saw Sicko. This is the first time I've been out of the house for a purely social or fun thing. I took my walker and we managed to get an isle seat. The movie was over 2 hours long and after about 1 1/2 hours, the seat was getting uncomfortable and I was squirming for the last 1/2 hour. Moral: See shorter movies for now.
We had also planned to go to dinner after the movie at one of our most favorite restaurants, which was conveniently located next to the theater, but it was closed for the 4th, so we'll save that for another time.
I continue to walk with my walker, and today we're returning the wheelchair. I'm generally tired after each walk and feel sore. Sometimes I feel like I've overdone the walking, but the next day I generally feel better. I continue to take steps with no support and I can walk across the room. That's a confidence builder. If anyone wants to race me, now's a good time. I see the orthopedist next Monday and hope that the fracture is healing correctly and that he starts me on physical therapy soon.
My CMML remains stable, but the platelet count is down slightly. I see my oncologist later this morning and will see what he has to say about it, if anything. I've made a slight adjustment in the natural medicines I'm taking, mainly to lower the number of pills I take each day. I'm so so tired of taking so may pills each day, but I'm also convinced they've helped me keep stable. We will see. I know that at some point, the CMML will no longer be stable and I'll have to be treated, but I hope that day is well in the future

Small Steps

The healing continues. Small steps that show improvement. I now can sleep on my side in bed. I can take 3 to 5 steps on my own without any support from a cane or walker. My daily exercise continues, although I'm tired after each walk. There is no pain at the site of the fracture, although I have developed additional pain on my right side. I've decided not to be a hero and am taking pain pills during the day for this new pain. They help. I see my orthopedist in 10 days for x-rays and further evaluation of the healing, as well as figuring out this new pain.
I've read some statistics on hip fractures and only 1/3 to 1/2 of those who get them return to prefracture activity, while the rest will need things like canes or walkers the rest of their lives. That scares the shit out of me. I'm going to focus on the positive, and will do whatever physical therapy is necessary to come out of this whole again.
Throughout all this, my one rock has been Arlene. I don't know how I would have handled all this without her. The little things that she does to comfort me physically and emotionally. She is ALWAYS there for me. When I get so tired of the pain, she's there to help me. I cannot put into words the depth of the emotion and love I feel for her. I must have done something good in my life for God to have blessed me with her.
By the way, my CMML is still stable.

The healing continues - correctly I hope

Fathers day June 17th - My depression deepened that day. Both my kids and stepkids called me and I couldn't help crying each time. It may have been a reaction to getting off the morphine - I've been off for 6 days now with no further effects. Or it may have been me being in touch with my feelings at a deep level. Anyway, I accept it as being who I am.
I am now sleeping in bed - yea for me. I can only sleep in one position on my back, but the sleep is good and deep and I wake up refreshed. I'm also reading before I go to sleep, something I couldn't do a week ago. My butt indentation on the couch is going away.
I continue with my walking 10 to 15 minutes a day with my walker. It tires me, but I feel good about it. I can also walk with my cane without using my free hand to balance myself. Progress. There's improvement in fluidity in transitioning from sitting to standing. I also took a shower today by myself. Further progress.
My doctor has ok'd me using our eliptical cross trainer for further exercise as long as I don't overdo it. I plan to start today or tomorrow at it's lowest level for 5 minutes or so.
The last few days have been pretty good ones for me. I feel no depression. I have diminished pain, though I still use Percocet up to 3 times a day to help relieve it, which is fine with my doctor. I generally feel good about my progress and there are periods during the day that I just feel real good. During my walking, I try to pick up my speed when I can.
While everything seems to indicate that I'm healing correctly, I see my doctor in a couple of weeks, and will find out then.
My latest blood test continues to show my CMML is still stable. I'm glad I don't have to deal with that yet, but the type of treatment - treat with Dacogen - is set for when I have to deal with it.

The healing begins

My depression continues . I don't know why but I constantly break into tears, sometimes spontaneously, sometimes after I see Arlene. Maybe the best thing is to allow it to happen and not fight it. I know its partly caused by tapering back on the morphine I've been taking for the pain. I'm down to 1 tablet a day and after a few more days, I'll either stop or cut back to 1 tablet every other day. I still can't say enough about Arlene, how lucky I am to have her care for me.
I now have a plan to heal: it's called exercise. I did my first exercise today - 12+ minutes of walking with my walker. Felt tired but good after it was done. This will be my daily routine with the goal of increasing the time. Felt less depressed after the walk. We're talking about going out to dinner. Getting out of the house will help alot.
I need to get a good night's sleep, but still can't sleep in bed. The couch will have a permanent indentation of my butt when this is done.
I know i'm vulnerable and that I have leukemia which may eventually kill me, but I'm feisty enough to say screw you - you're going to have to come get me. In the meantime, fracture, heal properly, and let me continue my life.

On the mend - hopefully

Saw the orthopedist on Monday. Very professional, but lacking warmth. Maybe warmth is not what I need right now. He again quizzed me on how I got the break, which I still don't know. I saw the cat scan and the break. It appears to be healing normally and should heal in another 6 to 8 weeks. He wants me to do some things - one of which is exercise. That means walking, using my walker. I plan to do that for 5 to 10 minutes at a time, 3 or 4 times a day or more often. Finding a flat place to walk will be a challange. He also wants me to get off the morphine and use Percocet for any pain. We work out a taper program that should minimize withdrawal symptoms. It starts today.
Before I saw the orthopedist, I was very depressed with increased thoughts of suicide rather than put up with the pain. I'm really a coward and don't think I could off myself, but the thought gives me another mental option. Now, I have an objective to work towards and my attitude has changed for the better.
My lab values for the CMML remain steady, with my platelet count showing a slow increase. We'll deal with that once my fracture is "fixed"

The pain continues but now we know why

The pain continues. The MRI is inconclusive and I return to Kaiser for additional images using a dye for a contrast medium. My rheumatoloigist is on vacation so the images are sent to my primary care physician, who I've had as my doctor for 15 years. A good guy. After reviewing the images he orders a cat scan. With him, things move at Kaiser. He called me in the morning and a cat scan was set up that afternoon. As with the MRI, the cat Scan was painfull.
The next morning I get a call from my doctor. According to the cat scan, I have a fracture in my right hip that appears to be trying to heal itself. He refers me to an orthopedist, who I will see next Monday and orders a walker for me. Everyone wants to know if I fell, which I did not, and how I could have gotten the fracture. I haven't got a clue. The only thing I can think of is that the high doses of steroids masked something that happened as I was woirking with my physical therapist.
I see my oncologist also this week. All treatments for CMML are put on hold till the fracture issue is resolved. My blood values continue to remain stable and constant, but Dr K will do another bone marrow biopsy soon to see if the disease has progressed. The current plan is to treat me with Dacogen UNLESS my values are still stable and the bone marrow biopsy shows no progression of the disease. I contineue to add more of my herbs to my daily pill collection. While my platelet count is still low, it is steady and above any real`danger point.
Throughout this ordeal, Arlene has been my real strength. There have been several times I've thought of ending it all if the rest of my life would be nothing but pain. She has been there for me, comforting me when I needed it, encouraging me when I needed it, making me laugh when that would help. When going from the car to the doctors, she wants to do wheelies in the parking lot with me in my wheelchair. how many points will I get if I crash into this person with a walker.
My goal now is to deal with the fracture, get rid of the pain, get out of the wheelchair, and live the rest of my life as normally as possible. I will no longer take things for granted and accept the fact that I AM VULNERABLE, and it can happen to me.

It hits the fan - hard

Long term steroid therapy with prednisone is not working on my platelet production. Dr K decides to switch me to Dexamethasone, a stronger steroid, and up the dose to a higher level. The Dex is giving me some side effect problems. In the meantime, I see Dr Cal for a scheduled appt. He reviews my chart and labs and tells me that Dr K is treating me for the wrong condition (itp) and the low platelets are caused by the CMML. He gives me a 5 week taper to get me off the dex and tells me we'll evaluate everything when I'm steroid free. I'm happy, I go home and start the taper.
About a week or 2 into the taper, I'm getting pain in both hips. I see my rheumatologist at Kaiser, who gives me trigger point steroid injections in my hip and tells me that the steroids have masked my arthritis symptoms and it's possible that I may continue to have pains, some quite severe as the taper continues. I can still walk, drive, and do most things. As I continue the taper, the pain intensifies dramatically. I am in pain 24 hours a day most of it severe and debilitating, and I can no longer walk without a cane and only for very short distances. I call Dr K who prescribes a large amount of Percocet for the pain. I take up to 12 a day and it barely touches the pain. If this is the rest of my life, why bother living it. My days and nights are spent mostly on the couch in pain with my only moments of pleasure being brief periods of respite from the pain.
The taper continues and as it draws to a close, I notice the pain easing somewhat. I'm down to "only" 8 Percocet a day. Arlene rents me a wheelchair, which I can use to go to Rachael's graduation (see previous post) and which I also use around the house. I still cannot walk.
I see the rheumatologist again, who x-rays my hip (it's now only the right hip in pain), and gets me off the Percocet by prescribing a low dose morphine. I am now steroid free and relatively pain free. The x-rays are inconclusive, but I may need a hip replacement or other surgery so an MRI is ordered, which I'm getting later today. Results to follow.
There are no words to anywhere nearly adequetly describe the 6 weeks of hell I went thru, and it's still not over. Without Arlene, I don't know how I could have made it. She was ALWAYS there for me doing whatever she could to help me physically and emotionally, to comfort me when I needed it, and encourage me when I needed it. Bless you.

A divergence into relevancy

Rachael, my stepdaughter graduated on Saturday from Cal State University at Monterey Bay. I had to be there for many reasons, but mostly because I helped raise her and I love her. It was important for her to know that regardless of the pain and other difficulties I am now experiencing, this was her day and nothing was going to stop me from being there. We rented a wheelchair (I currently temporarily can't walk) and undertook the 4 hour ride from our home.
This was her day, but she knew what I had to endure to be there. It would have been easy not to attend but it would not have been me, and she knew it. Her words of appreciation whispered in my ear brought tears to my eyes and joy to my heart. This is why you fight to live, so you can be around those you love and cherish. I will never forget that day.

More Backround - what's happening

I was a healthy guy, working part time, walking 2-3 miles a day, reasonably fit with no major health issues. I get this diagnosis and it's like I fall into a giant abyss with health issues. The CMML is not giving me problems - all my blood values are consistant and stable and I have no symptoms, but everything else that never gave me a problem is now a problem.
I'd been previously diagnosed with gout, and pretty much held it under control with diet and meds. Now I'm starting to get gout attacks. HURTS LIKE HELL and at times I just want to end it all. Treatment is with steroids - prednisone either orally or by injection. Works pretty well. Why am I getting attacks now???
Time for a colonoscopy to make sure I'm not "leaking iron". Hello. I've got an esophageal ulcer. Cute little bugger. Treat it with Prilosec and it clears up. NO POLYPS. Great news. The procedure is not a big deal, but preparing for it is.
I have an ongoing problem with thrombocytopenia - low platelets. If it gets too low, it can cause spontaneous bleeding. Treatment is with steroids - just like gout. Usually after a 2 week steroid taper (start with a high dose and taper back the dose over a 2 week period), the platelets increase. Dr K says it is ITP (idiopathic thrombocytopenia purpurea) and not related to the CMML
I now develop bad back pain and severely limited motion. Diagnosis: osteoarthritis. Treatment - physical therapy, heavy duty pain killers - oxycontin - for severe pain, and, you guessed it: steroids. I see a chiropractor and an accupuncturist and while there is some relief, it is not lasting. I do reasonably well with the steroids which masks the inflammatory symptoms and relieves the pain.
With all the stopping and starting of steroids, Dr K decides to put me on a long term steroid taper. Then the shit hits the fan.

Further Backround - UCSF - The gold standard

UCSF - University of California San Francisco Medical Center. One of the best facilities in the country. It will play a very significant part in my life.
During my research on CMML (Chronic myelomonocytic leukemia), I came across a procedure called a "mild cell stem transplant". In essence, it's a scaled down version of a full stem cell transplant designed for old farts like me, which is the only procedure that offers the possibility of a CURE for cmml. I mentioned it to Dr K (how come I had to bring it up???). While trying to discourage me, he gave me the name of a doctor at UCSF who is at the forefront of this type of procedure. After much hassle and me having to aggresively e-mail the doctor directly, I got an appointment. Again, bring slides, lab results, etc.
What a breath of fresh air. This doctor is both a clinician as well as a researcher and knows which end is up. Dr "Cal" explained all about CMML to me and Arlene - things we never knew, and in a way that we were able to understand. It also turns out that he shares a couple of patients with Dr K. Add another to the list - me. We discussed the mild cell stem transplant. I'm not ready for it yet. Top age to perform -up to 75. Odds of success - 30%. Chances of dying within a year after the operation - 20-30%. Trick to increase odds - do it at the right time. Finding the right donor - imperative for success. I'm not ready for it yet, but I am encouraged. He agreed to take me on as a patient and work with Dr K. He called Dr K and ordered additional tests to rule out certain drugs which can be used in some circumstances. All were negative. I see him every 3-4 months.

I feel very very positive. I have a team of doctors, my blood values remain stable, I feel I am taking charge of my treatment and I don't feel the disease is inhibiting me in any way.
The shit has yet to hit the fan.

More Backround - Alternative Medicine

When diagnosed with a fatal disease, there are 2 things that are absolutely essential:
1. Learn absolutely averything you can about the disease. Causes, symptoms, treatments, survivor odds, clinical trials - everything, everything, everything. Let google be your guide and follow it around. The more you know, the more you can help control you own destiny.
2.Understand that you CANNOT control your own destiny. When your disease rears its head, your body follows, your doctors make decisions that may not be the decision you would make, and you follow because it will most likely give you the best chance to survive the incident.

Given the lack of any western medicine that had a real effect on the disease at that time, I decided to check out alternative eastern medicine. Yes, I did noni, yes I did graviola, I scoured around trying to find isatis root, but my approach was helter-skelter. I was put in touch with a clinical nutrionist. We talked for a long time and she stressed several things: A positive attitude, a buildup of my immune system so that my own body can help fight the disease - and yes, your body can help fight the disease, ridding my body of poisons thru good nutrition (organic) and a goal of keeping my blood values stable, which they were. Slowly, she started adding things to my protocol - green powders, red powders, quercetin, resveratrol, green tea extract, and so on. I bought a juicer to make my own wheat grass juice. Have you ever had wheat grass juice?? NASTY. I gave that one up. I changed my diet, and while not 100% organic, where I have a choice, I always choose organic.
I informed my doctor at Kaiser (whom I will now start callin Dr K) of my new protocol. He warned me to be careful, that alot of these people are looking to make a fast buck. Not the case here, since all she tells me is what to get.
Since being diagnosed in September, Dr K has set up a weekly blood test to monitor my blood values. I have been very very stable with no major fluctuations of any values. His course of treatment at that time is watchful waiting. Since my own personality is one of "action", alternative medicine allows me to "control" my own destiny. Yeah right. But it does give me a sense of action on my part and allows me to feel that I am fighting back. Is it contributing to my stable values? Don't know, but at that time I didn't want to stop. Today, I'm still stable.
My next backround post will introduce you to the gold standard- UCSF Medical Center

BACKROUND - Diagnosis/reaction

My routine physical in August was anything but routine. "You have anemia - eat more red meat" my doctor told me. "Your platelets are low. Take iron tablets". 2 weeks later, no change. I get a call from my doctor telling me that he's referring me to a hematologist to try to figure out the problem. I have Kaiser and I'm happy there. Like it alot. Had my doctor for 15 years.
He never said the hematologist was also an oncologist. Imagine my shock to see that. What the hell is going on here? I feel fine, no problems. I'm walking 2-3 miles a day, no problems. But the reality is starting to sink in that there is a possiblility something is seriously wrong with me. No, I don't have time for this crap. We're going to Eastern Europe next year. I want to see Roumania where my father was born. I don't have time for this crap.
I see the hematologist. Young guy, educated in Denmark. Reminds me of Doogie Howser. I like him. No bullshit and to the point. Reviews all my medical history and tells me he thinks I have leukemia. Squarely between the eyes. C'mon Doc, I'm not ready to have leukemia now. Too much to do. "We're going to do a bone marrow biopsy and that'll tell us for sure and what kind of leukemia it is." My wife had gone to Burningman - I decided not to go this year. I call her (satellite phone) and tell her. I get the biopsy done, get a call from the Doc "You have CMML"
I still feel fine - no symptoms or anything.
My computer is now my best friend. Sores on my butt from hours at the computer finding out everything I can about CMML. NOT GOOD. Orphan disease affecting 1500-2000 people a year.
No effective treatment. Average life expectancy less than 2 years. I'm not ready for this crap.
Why me?? The emotion is unbelievable. Cry, cry, cry, knowing you have 2 years to live. Poor me, poor me, poor me. Tell my kids. More tears, mine and theirs. Go here, go there. Find someone who can treat this mother.
Ok, enough of this crap. Let's get a 2nd opinion. I'm lucky. Thru a connection, I get an appointment at Sloan Kettering in New York with the head of the hematology/oncology dept. Like getting an appt with GOD. My wife tells me "3000 miles away - they don't have good doctors at Stanford or UCSF??" But this is Sloan Kettering, the best cancer center in the country and I have an appt with G - - . We go and the diagnosis is confirmed. Return home.
My wife is in complete denial AS AM I. This is a problem and we just have to figure out what to do - like any other problem, right. We'll see.
Still feel good, no symptoms or anything. Can't be true.
Stay tuned

My first post

At 4 AM, waking from my sitting up sleeping position on the couch, I became very emotional and began to cry. For the 1st time in my life, I truly believed I was vulnerable and this fucking disease could really kill me. That's when I decided to write this blog. I need a way to express myself, all my emotions, and the journey I am taking to the end of my life. I update my kids periodically as to what's going on, but now that's not enough for me. I need a way to express myself and talk about the leukemia when the need hits me.
As I go thru this, I'll back up and talk about what actually happened in my life since I was diagnosed 8 months ago as well as what's happening now. There have been good times and bad. My wife Arlene has been great and has provided me with strength. She's also been the most grounded in providing me with practical solutions. Bless her.
One thing I do not want this blog to be is a poor me, poor me, poor me kind of blog. Like most of my attitude in life, I want it to be a positive experience