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.
Wednesday, May 30, 2007
Monday, May 21, 2007
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.
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.
Thursday, May 17, 2007
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.
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.
Tuesday, May 15, 2007
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.
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.
Monday, May 14, 2007
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
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
Sunday, May 13, 2007
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
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
Saturday, May 12, 2007
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
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
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