Accepting potential bad news and staying positive

Sorry it's been a week since my last post. A week ago tomorrow we received some not so good news. My cell counts were continuing to go down, and they suspected some sort of graft vs. host disease. Additional tests were run and yesterday we got the results. The donor cells I've received are having a hard time settling into the soft tissue of the bone. At this point they should seeded and be producing approx. 25% of fresh cells and they are only at 2-3%. Multiple reasons could account for this. The best being they will still eventually seed, but they are just taking their sweet time. If this is the case, it is abnormal but not undocumented and will need to be monitored almost daily. The next 2 weeks will tell if this is going to happen. The second possibility is I will need another round of new cells from my donor. A booster transplant. The third is not one I really want to go to, but there are still options. I still have cancer cells in my body that need to be fought off with the new cells. Without healthy new cells producing the small existing residual cancer can't be fought off.

We are still very optimistic for a cure, and feel through the faith and prayers of all friends and family that God will intervene and be the healing source I need. We can never give up faith and hope. Will disappointment may exists, I need to keep fear out. I'm in my Father in Heaven's hands and he will see my through this.

Without new cells my energy continues to drop each day. I'm getting blood transfusions and other enhancements to try and make up the ground. My wife continues to take excellent care of me and together we will get through this.

I will keep you updated with all new developments. Take care and keep smiling.

Your friend, Mike

Ridding the rolacoster

Just when I thought I was on the upswing, took a minor step back. Last weekend was great, but started not feeling well, counts went down a bit, with esophagus and stomach pain back front and center. Then during a treatment a migraine headache came up with prism lights and blurred vision. Thought I was back in the late 60's for a moment. No worries, this to shall pass, with good days on the horizon.

Starting to gain some friends going through the same thing as I. There is one gentlemen about my age and we both got our stem cell infusion on the same day (20 days ago). His name is Mike as well. We both get the same symptoms, mirror almost perfectly, causing the nurses to nick name us "the evil twins". I'm still scratching my head on the "evil" part, but I'm glad we can give them a smile now and again. I promise, I'm not harassing them. Ya see ya want to stay on the good side of people who see and take care of you 3 days a week, injecting you with all manor of fluids, ect.

Stay well my friends, smile to one extra party today, for each day is a gift, a gift from God.

Scope went well, starting on the mend

The scope didn't produce anything unexpected. Lots of redness and some swelling all the way down and into to stomach. They say this will pass and is due to the amount of radiation I received. Two months ago Standford upped the amount of radiation given feeling that additional long term benefit would be gained.

On Thursday I believe I hit my low. Couldn't get out of bed for to long with energy levels at an all time low. They predicted this would happen right around this time and slowly I should start feeling better. I'm still boarderline neutropenic so have to be real carefull going outside and whom I'm around. Wouldn't want to catch a virus now.

Friday, Saturday and Sunday were much better days. I could tell there was some energy coming back and I could sit up for extended periods of time and have some good conversation. Hopefully this trend will continue.

I'm day 15 post transplant. At this point all my stem cells should be seeded, mature, and in the soft tissue of the bone. They are now producing new cells if all is on plan. In a little over 2 weeks they do their first official check of determining how many new cells (B positive) in ratio to my existing O positive cells. They are hoping it will be a 50/50 split. Within 3 months post transplant I shoud be 100% B positve and get to go home. That would be awesome.

I am fully back on the bull who is not knocking me off. Persistence will prevail wiht the trophy on the horizon.

Take care, Mike

Time for a scope - what are those pests doing now?

Howdy,

Due to the fact I've been having some throat, esopogas, and stomach pain that doesn't seem to want to go away, they are going to put me under what they they call consious sedation, (not sure what is consious about sedation) and take this small size garden hose down my throat to see if anything there is misbehaving. They say this is not to uncommon due to the chemo and radiation doing a number on the lining of the tissue in question. Only takes about an hour post prep, so I should be singing opera (almost spelled Ophra - my afternoon friend, got to love Dr. Oz) within a few days after.

I want to thank everyone who has said such nice things regarding my posts. In all seriousness it means so much to me. The support I get from family, friends both from work and out of, fellow church mates, really lifts the spirits and you step back and say "why am I so blessed"? Thanks again, I love you all.

Being at the hospital almost every day, talking to and observing others had made me realize that not many have the same love and support that I do. When I get on Skype and see my grandchildren sing me songs it nearly brings me to tears. I love them all so much. I even wrote a nursery rhymm called "The fish and I" (Like the King and I with a twist - just kidding). My 4 year old Halle has it memorized and it melts my heart when she sings it. Maybe my donor is a poet and some cells are sneaking out.

Ya all take care, Michael

Back to the hospital, now out, it's all good

During my Friday visit to the ITA, I started to develop the shakes and chills. I didn't go away the 4 hours I was there and the doctor sent me back to E-1 as an inpatient. In addition I was neutropenic and had to be in isolation meaning only nurses could enter my room (Sheila to) and I was not allowed to leave the room. Friday night I got real sick and from the first time since high school I actually threw up. I only mention this due to 3 years of chemo historically I never had this problem to my Oncologists surprise. Guess I broke that barrier. I got released yesterday afernoon and am back in our cossy apartment.

They say approx 75% of transplant patients end up back as an inpatient for various complications. Glad mine was only a few days. Sheila is taking excellent care of me. She is the best.

I'm trying to keep things on the lighter side as best I can. I try and make the nurses laugh so as to possible invoke a laugh out of myself. When I asked for an extra pillow and upon the nurse bringing me one I stated, "do you ever sleep with a pillow between your legs?" She laughed and said "no, does it help", for which I replied, "absolutely, ya know when your on your side and your knees knock together, just horrible, the pillow is the solution, you ought to try it". She replied, "Well I sleep on my back but if I go to my side, I will try it". She walked out of the room laughing". I did it, she laughed and I tried to play off that to make her laugh more. The simple things in life you do when your committed to a room to bring some joy.

As an ex CEO for Progressive Insurance would end his letters I will use the same line, Peace, Love, Joy.........

Trying to stay on the bull - 8 seconds at a time

This phase of treatment in the recovery process they say is the hardest. With a caveat that you don't develop graft vs. host disease once the new cells start producing. That is a new chapter I hope I don't have to write. The fatigue is getting pretty severe. Hard to do much walking and I get winded very easy. I've developed sores in my throat and esophagus that is making it very hard to swallow. The last 3 days the only way I can eat is take some liquid lortab (vicodin)then wait 30 minutes before eating. Swallowing pills, something I could do very easy is a dreaded event. I have to take only one at a time, and at times the pill gets stuck in my throat why I desperately try and get it to go down. If this condition doesn't improve in the next few days they are going to take a scope and look down my esophagus to see what cooking. All factors considered, nothing to complain about. As Joe Friday on Dragnet would say "just the facts mam". Talk to ya all later.

Transplant successful - the road to recovery

Sorry it's been so long since my last update. While everything is right on plan, the fatigue and side effects have made it difficult to post. Getting to the hotel has been nice. Starting to feel like my home away from home.

What they call your second birthday (July 3rd) was exciting. I received my new stem cells. Took just a few hours to infuse the new cells, but emotional it marked a milestone that we have been looking forward to for 7 months! The doctor was real excited about the quality of my new cells. They are rated in 3 categories; 3+ being good, 4+ being excellent, and 5+ being outstanding. My donor cells rated a 5.1, something they say is the gold standard of donated blood. Side effects during the transplant were minimal. I thank God for for having such a good donor as well as all of you who continue to pray for my health. This transplant has been very humbling. I am totally relying of forces outside of my control and praying for God and the faith and prayers of all to make this a complete success. I need to remind myself that it is his will and not mine be done.

I'm finding I'm getting weaker by the day. They say this will continue for about 2 weeks until the new stem cells start producing new blood cells. They tell me it takes about 3 months for the new cells to completely replace my current cells. I will then be converted from my current type O positive to my new type B positive.

I'm met some really nice people who are also in the process of either getting or already having got their transplant. I go almost every day the hospital to what they call the ITA room, (infusion treatment area) where they check your blood levels, give you blood, platelets, or any other needed medication. When you see 20 year olds going through the same thing during the prime of their life it keeps things in perspective. I was sitting next to a lady in her mid 20's, married with 2 small children and needing a transplant to live. Her bone marrow stop producing any blood cells and without a successful transplant, she will not live. Her sister is a perfect match so things looks good. Her husband left for a few minutes and came back with a T-shirt with the insignia of "CA Department of Corrections" and gave it to me. Very cool, and shows how quickly you can make friends with those who share your same condition.

Sheila just put on some cool funky music, so I'm going to do some dancing and jump start these new cells. Rock on.....peace......