Howdy,
I have again failed to do timely updates. My apologies.
A lot has transpired in the last month. I spent month 3 making steady progress in my overall health. I have gained back enough energy to start doing normal functions again. In fact, 2 weeks ago I was cleared to start working part time from my apartment near Stanford. 2 days ago I was released to come home with once a week appointments still to take place at Stanford. We are getting set up again here at home. Its funny, after 3 months Stanford started feeling like home. I still have a ways to go in full recovery (approx. one year) but steady progress is being made.
I want to thank everyone for their encouragement and support during the initial stages of my treatment. It was the support of all that kept my attitude positive and a strong desire to recover.
I will still update my blog (better than the last month) and keep you posted. There are some very important test results that I should hear about in approx. 1 week.
Take care, Mike
PS. Work is a good thing for me. Almost therapeutic to some extent. I love what I do and who I work with. Like a family away from home.
Thursday, October 1, 2009
Friday, September 4, 2009
Blood, counts and the Ritz Carlton
Howdy,
First let me apologize for how long it's been since my last post. I will be better.
Got some pretty good new today on the donor vs. my own cell counts. I've come from 9%to 29% in Donor grafted status. While not on a normal schedule, (were playing by Mikes rules) I've come from 3% to 9% to now 29% donor cells grafted in. We are headed in the right direction, just on a different path of progression. Ya know, I've never been completely normal so why would I expect anything different here. I consider this good positive news. It will be a month until they check again and if the ratio's hold true, count should go from 29% to mid 80's next time. My white blood cells also hit a all time high of 3.7. Only .3 away from being in the low side of the normal range which is generally where I hang. I did need 2 units of blood today, bring me to a total of 8 units now infused in me. This should give me a boost on the energy side. All good stuff.
Your probably wondering what this all has to do with the Ritz Carlton. Let me explain. The coast is only 30 minutes away from us. We drove down yesterday and in Half Moon Bay saw some side streets marked "to the coast". Followed the signs and it drove us right to the Ritz with a huge spread on the ocean and beautiful golf course on the beach front. So we said, "what the heck, lets give it a try". Had to get a special pass to get in with our own gate code for parking. When then walked to the back side of the Ritz and wondered up to their overlook for the beach and golf course. Parked ourselves in some nice wooded beach chairs and kicked back for a few hours watching the 18th hole and coast. We even brought our own lunch so had a very nice afternoon in Ritz style for free. With my mask, shades, and hat, looked so scary the staff didn't dare approach me. I was giving Darth Vader a run for his money.
Well life is good. Progress is being made, and we are on the down side of getting to come home. Stay well, enjoy and see ya all soon.
Take care, Mike
First let me apologize for how long it's been since my last post. I will be better.
Got some pretty good new today on the donor vs. my own cell counts. I've come from 9%to 29% in Donor grafted status. While not on a normal schedule, (were playing by Mikes rules) I've come from 3% to 9% to now 29% donor cells grafted in. We are headed in the right direction, just on a different path of progression. Ya know, I've never been completely normal so why would I expect anything different here. I consider this good positive news. It will be a month until they check again and if the ratio's hold true, count should go from 29% to mid 80's next time. My white blood cells also hit a all time high of 3.7. Only .3 away from being in the low side of the normal range which is generally where I hang. I did need 2 units of blood today, bring me to a total of 8 units now infused in me. This should give me a boost on the energy side. All good stuff.
Your probably wondering what this all has to do with the Ritz Carlton. Let me explain. The coast is only 30 minutes away from us. We drove down yesterday and in Half Moon Bay saw some side streets marked "to the coast". Followed the signs and it drove us right to the Ritz with a huge spread on the ocean and beautiful golf course on the beach front. So we said, "what the heck, lets give it a try". Had to get a special pass to get in with our own gate code for parking. When then walked to the back side of the Ritz and wondered up to their overlook for the beach and golf course. Parked ourselves in some nice wooded beach chairs and kicked back for a few hours watching the 18th hole and coast. We even brought our own lunch so had a very nice afternoon in Ritz style for free. With my mask, shades, and hat, looked so scary the staff didn't dare approach me. I was giving Darth Vader a run for his money.
Well life is good. Progress is being made, and we are on the down side of getting to come home. Stay well, enjoy and see ya all soon.
Take care, Mike
Friday, August 28, 2009
From Mike's better half
Hello everyone;
I thought I would jump in here on Mike's post to give you my view on life....
We are trying to hang tuff.... We take each day as it comes. It reminds me of a roller coaster ride with it's ups and downs and we are seat belted in for the long hall. However,we find focusing on the ups is far more positive then dwelling on the downs..
We are together 24-7 and still are madly in love.. Somehow we are surviving in our little place pretty well. I don't shop anymore because there is no place to put anything..hum I told Mike, if we sell our house and live like this at home we would be rich...
I love the maid service here. I haven't scrubbed a toilet or cleaned a tub for two months.... It's the best....
At clinic there is a group of 7 of us that just clicked right from the get go. We were there all at once today and had such a fun time. We are making great plans for reunions when we can all look back when this is all behind us......
On a more serious note. We feel the Lords hand in every step of the way. We also feel of your love and prayers.... We truly feel blessed to even have this opportunity for hope. Our children's strength continues to motivate us along with those 4 beautiful grandchildren.
We truly hope that you are all doing well. We think of you often. Life is so precious, I hope we can all find joy in each day, even through adversity and the challenges of life. We have so much to be grateful for and we so enjoy your comments on this sight.
Lot's of love,
Sheila
I thought I would jump in here on Mike's post to give you my view on life....
We are trying to hang tuff.... We take each day as it comes. It reminds me of a roller coaster ride with it's ups and downs and we are seat belted in for the long hall. However,we find focusing on the ups is far more positive then dwelling on the downs..
We are together 24-7 and still are madly in love.. Somehow we are surviving in our little place pretty well. I don't shop anymore because there is no place to put anything..hum I told Mike, if we sell our house and live like this at home we would be rich...
I love the maid service here. I haven't scrubbed a toilet or cleaned a tub for two months.... It's the best....
At clinic there is a group of 7 of us that just clicked right from the get go. We were there all at once today and had such a fun time. We are making great plans for reunions when we can all look back when this is all behind us......
On a more serious note. We feel the Lords hand in every step of the way. We also feel of your love and prayers.... We truly feel blessed to even have this opportunity for hope. Our children's strength continues to motivate us along with those 4 beautiful grandchildren.
We truly hope that you are all doing well. We think of you often. Life is so precious, I hope we can all find joy in each day, even through adversity and the challenges of life. We have so much to be grateful for and we so enjoy your comments on this sight.
Lot's of love,
Sheila
Monday, August 24, 2009
Fighting the good fight
Howdy,
The last 3-5 days seem to mark a bit of a turn for the worst, but maybe not totally outside of what can occur. Some of the more recent issues landed me back in the hospital for overnight. It's kind of a bummer when you experience some pretty good days and then go south, but the key is not to let it get me to down. It's the long haul were looking at that is important.
Tomorrow they will take a blood test to determine the donor vs. my own cell production. The test takes a full week to complete so won't know for while. Hopefully it will be up significantly from the 9-10% range (donor cells) last time. The doctor is hoping for 40+% range. That would be sweet.
Ya know each day (quoting from the movie) has a bit of "ground hog day" to it. A continually repeat of activities without a lot of variation. Another to be expected situation for someone going through a transplant.
Stay well, enjoy, and I'll talk to ya soon. On the next "ground hog day" that is.
Take care, Mike
The last 3-5 days seem to mark a bit of a turn for the worst, but maybe not totally outside of what can occur. Some of the more recent issues landed me back in the hospital for overnight. It's kind of a bummer when you experience some pretty good days and then go south, but the key is not to let it get me to down. It's the long haul were looking at that is important.
Tomorrow they will take a blood test to determine the donor vs. my own cell production. The test takes a full week to complete so won't know for while. Hopefully it will be up significantly from the 9-10% range (donor cells) last time. The doctor is hoping for 40+% range. That would be sweet.
Ya know each day (quoting from the movie) has a bit of "ground hog day" to it. A continually repeat of activities without a lot of variation. Another to be expected situation for someone going through a transplant.
Stay well, enjoy, and I'll talk to ya soon. On the next "ground hog day" that is.
Take care, Mike
Wednesday, August 19, 2009
A lot of the same - ups and downs
Howdy,
This last week can be characterized as a lot of the same. I did have a minor reaction to a blood transfusion and ended in the hospital overnight. Counts at times go up, then back down. Hard to develop any firm trend. The one real positive is my platelet count is almost normal. Now if the red and white cells would follow suit we would be styling. I've been out on disability now for 2 months. I was hoping to be working part time by now but need the body to kick it up a notch first. The mind is willing but the body is weak.
Someone asked me the other day, "so what major take away that will change your life going forward will be the by product of all of this?" I hope compassion, understanding, being more willing to think of others before myself. Right now it's hard to focus outside of my current situation. But when this to passes, and it will pass, I pray to have a keener understanding and awareness of serving others. For when we give, we seem to always get more in return. The key is not to have and expectation of deserving anything for service given. I hope my attitude remains giving because it is the right thing to do, and nothing else.
Take care, Mike
This last week can be characterized as a lot of the same. I did have a minor reaction to a blood transfusion and ended in the hospital overnight. Counts at times go up, then back down. Hard to develop any firm trend. The one real positive is my platelet count is almost normal. Now if the red and white cells would follow suit we would be styling. I've been out on disability now for 2 months. I was hoping to be working part time by now but need the body to kick it up a notch first. The mind is willing but the body is weak.
Someone asked me the other day, "so what major take away that will change your life going forward will be the by product of all of this?" I hope compassion, understanding, being more willing to think of others before myself. Right now it's hard to focus outside of my current situation. But when this to passes, and it will pass, I pray to have a keener understanding and awareness of serving others. For when we give, we seem to always get more in return. The key is not to have and expectation of deserving anything for service given. I hope my attitude remains giving because it is the right thing to do, and nothing else.
Take care, Mike
Tuesday, August 11, 2009
Holding the course - with ups and downs
The last week since I posted has shed some very good news. My donor cells went from 2-3% to 9-10%. I should be at 40%+ right now, but this is a good start. My doctors say I can be cautiously optimistic. I'm still experiencing graft vs host problems, receiving blood and other drugs to keep me going. I'm at a point now where they need to give it 2-3 weeks before another cell check. Most of my other count (with the exception of platelets)are still going down and need booster shots for cell projection. Monday I was very close to being full blown neutropenic (very disease susceptible) and one that can land you back in the hospital.
I find an interesting emotion, trying to stay somewhat neutral at this critical stage of the game. While I'm optimistic the donor cells will continue to rise, I'm also aware they may not. Getting to excited makes for a bigger let down. However this does not change my optimism, hope and belief that things will continue in a positive way.
I'm close to half way into my stay. Eventually being able to go home will be outstanding. I miss home, my friends, and the ability to go to work and contribute. I really like my job, I find it challenging and theraputic. Now if my body will act with a greater sense of urgency and take this 21 year old cells as my own, it will all be good.
Thanks again for all your comments. They keep my strong.
Take care, Mike
I find an interesting emotion, trying to stay somewhat neutral at this critical stage of the game. While I'm optimistic the donor cells will continue to rise, I'm also aware they may not. Getting to excited makes for a bigger let down. However this does not change my optimism, hope and belief that things will continue in a positive way.
I'm close to half way into my stay. Eventually being able to go home will be outstanding. I miss home, my friends, and the ability to go to work and contribute. I really like my job, I find it challenging and theraputic. Now if my body will act with a greater sense of urgency and take this 21 year old cells as my own, it will all be good.
Thanks again for all your comments. They keep my strong.
Take care, Mike
Tuesday, August 4, 2009
Survival mode - still smiling
Howdy,
4 of the last 5 days have been brutal. Each day brought decreased energy, more shakes, and continual flu like symptoms. It's like you feel you body is slowly tapering off all source of energy. You mind is still there but the body just doesn't respond. Today has been a gift. I actually got to go outside for and extended drive which was really nice. I'm hopping that today's small burst of energy is good signs of things to come. It will be between tomorrow and Friday before we find out if my new cell production has risen from the 2-3% level. They are doing a score of new blood tests given my status. Took 14 viles of blood yesterday. My critical counts haven't started to rise yet, but the good news is they aren't dropping.
Oh, I've also become a Stanford research patient. It's nice to know that Stanford is constantly trying to improve transplant processes. When something goes out of normal, they want to study to find ultimate reason and when enough data becomes available, processes can be changed. I can't help to think of all the parties before me and what they gave to make the processes today the best available. If my results could make the difference in life with just one person, it makes it all worth it.
I want to thank everyone who continues to pray and has fasted for me. The outpouring of support is truly humbling. Thanks again to my wife, who without her support this would not be possible. Through my 13 year battle with cancer, she has always been right by my side.
Take care, Mike
4 of the last 5 days have been brutal. Each day brought decreased energy, more shakes, and continual flu like symptoms. It's like you feel you body is slowly tapering off all source of energy. You mind is still there but the body just doesn't respond. Today has been a gift. I actually got to go outside for and extended drive which was really nice. I'm hopping that today's small burst of energy is good signs of things to come. It will be between tomorrow and Friday before we find out if my new cell production has risen from the 2-3% level. They are doing a score of new blood tests given my status. Took 14 viles of blood yesterday. My critical counts haven't started to rise yet, but the good news is they aren't dropping.
Oh, I've also become a Stanford research patient. It's nice to know that Stanford is constantly trying to improve transplant processes. When something goes out of normal, they want to study to find ultimate reason and when enough data becomes available, processes can be changed. I can't help to think of all the parties before me and what they gave to make the processes today the best available. If my results could make the difference in life with just one person, it makes it all worth it.
I want to thank everyone who continues to pray and has fasted for me. The outpouring of support is truly humbling. Thanks again to my wife, who without her support this would not be possible. Through my 13 year battle with cancer, she has always been right by my side.
Take care, Mike
Thursday, July 30, 2009
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
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
Thursday, July 23, 2009
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.
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.
Sunday, July 19, 2009
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
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
Wednesday, July 15, 2009
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
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
Monday, July 13, 2009
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.........
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.........
Wednesday, July 8, 2009
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.
Sunday, July 5, 2009
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......
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......
Monday, June 29, 2009
3 days post hospital
It was great to get into our hotel (Marriot Residence Inn) room on Friday night. I also got a 2 day rest from treatment. I think we brought half our house here, Sheila already has the place looking like home. It's a nice 2 bedroom wiht a full kitchen. It should serve us well. I have my computer fully set up (brought from home) and can even print, a comfort a wanted to have. Overall a fair weekend heath wise. Did real well on Saturday and then had a down day Sunday. Had radiation treatment this morning and doing pretty good. I'm really looking forward to Friday when I get the actual transplant.
Side note - you know the unit you have at the hospital that controls the TV and can call the nurse? Well I learned one more function it serves on Friday afternoon before being released. Thinking I was unplugging something else, I accidently pulled the plug out of the wall. To my surpise the alarms outside my room went off and a host of nurses and doctors were converging on me. I quickly plugged it back and said whoops, sorry.....Turns out doing this signals a "code blue" meaning I'm trying to check out permanently prematurely. After being properly educated about not doing this again and causing a planned panic, I smiled and said...."just a fire drill guys", glad to see it worked. Smile........
Side note - you know the unit you have at the hospital that controls the TV and can call the nurse? Well I learned one more function it serves on Friday afternoon before being released. Thinking I was unplugging something else, I accidently pulled the plug out of the wall. To my surpise the alarms outside my room went off and a host of nurses and doctors were converging on me. I quickly plugged it back and said whoops, sorry.....Turns out doing this signals a "code blue" meaning I'm trying to check out permanently prematurely. After being properly educated about not doing this again and causing a planned panic, I smiled and said...."just a fire drill guys", glad to see it worked. Smile........
Friday, June 26, 2009
Last day of treatment - week one
Didn't have the energy to do a post in the last 2 days. This chemo raditation coctail is as strong as it gets. The side effects come in waves, going from feeling not to bad to flat in bed. I am almost through the first full week of treatment. I've had 5 doses of radiation, and in an hour will get my last dose of chemo. Next week I just get radiation for 5 more days. By the end of next week my immune system will be all but gone. That is when the stem cell transplant will take place. They say in 7-10 days it will be as bad as it gets. Then within a few weeks the ride back up. A slow one, but healing starts and the road to recovery begins.
Great news, I get to go to the hotel starting tonight. No more hospital bed and I will have the comfort of my wife to be with and help take care of me. She is a jewel, I'm so lucky to have her.
Great news, I get to go to the hotel starting tonight. No more hospital bed and I will have the comfort of my wife to be with and help take care of me. She is a jewel, I'm so lucky to have her.
Tuesday, June 23, 2009
Day 3 in hospital, treatment has begun
Got admitted to the hospital on Sunday afternoon. Basic stuff and they started me on steroids and liquids. Got settled in, did some reading, watched ESPN and called it a day.
Day 2, radiation treatment in the morning. Both Radiation techs took permanent black markers and drew on me from neck to thigh. Felt like the character out of Ray Bradbury's book the Illustrated Man. As for the actual radiation treatment, felt like they put a toaster in my belly and popped in 2 pieces of wheat toast. Ya know when you leave the bread in to long and the crust starts to burn, well that aroma went right up into my throat. Now if I would have put bacon in the toaster would have been much better. A little later on felt like I had a mild sunburn where they radiated me.
In the afternoon they started a chemo type drug to further eradicate any remaining cancer. 6 hour infusion and overall thought I did pretty good until the side effects started kicking in. First the heart rate when from a resting 65 to 100-120 range and just stayed there. Then the joint pain came on followed by a mild temperature. It started to get nasty when the skakes, chills, hot flashes and pain took over. This is when reality hit in that I'm really doing this. I need to do 5 rounds of the ATG (drug abbreviation) in successive days so I'm really not looking forward to tomorrow. Finally around midnight they gave me something to sleep. No way I could have without a mild induced coma. Just kidding on the coma comment but it seemed appropriate.
Day 3, woke up a few times at night but the medication allowed me to sleep until 7 am. I still don't feel well but good enough to shower, take a walk, and then at 8:30 they came and got me for more radiation. I do that for 14 straight days. My skin will be a well done ribeye stake before that is through. The ATG therapy starts this afternoon. Really not looking forward to that. Hopefully won't be as bad as my first treatment. Just need to put the towel between my teeth and say again "Cowboy Up". I've got 4 more bulls to ride and would like a nice score. Talk to ya all soon.
Day 2, radiation treatment in the morning. Both Radiation techs took permanent black markers and drew on me from neck to thigh. Felt like the character out of Ray Bradbury's book the Illustrated Man. As for the actual radiation treatment, felt like they put a toaster in my belly and popped in 2 pieces of wheat toast. Ya know when you leave the bread in to long and the crust starts to burn, well that aroma went right up into my throat. Now if I would have put bacon in the toaster would have been much better. A little later on felt like I had a mild sunburn where they radiated me.
In the afternoon they started a chemo type drug to further eradicate any remaining cancer. 6 hour infusion and overall thought I did pretty good until the side effects started kicking in. First the heart rate when from a resting 65 to 100-120 range and just stayed there. Then the joint pain came on followed by a mild temperature. It started to get nasty when the skakes, chills, hot flashes and pain took over. This is when reality hit in that I'm really doing this. I need to do 5 rounds of the ATG (drug abbreviation) in successive days so I'm really not looking forward to tomorrow. Finally around midnight they gave me something to sleep. No way I could have without a mild induced coma. Just kidding on the coma comment but it seemed appropriate.
Day 3, woke up a few times at night but the medication allowed me to sleep until 7 am. I still don't feel well but good enough to shower, take a walk, and then at 8:30 they came and got me for more radiation. I do that for 14 straight days. My skin will be a well done ribeye stake before that is through. The ATG therapy starts this afternoon. Really not looking forward to that. Hopefully won't be as bad as my first treatment. Just need to put the towel between my teeth and say again "Cowboy Up". I've got 4 more bulls to ride and would like a nice score. Talk to ya all soon.
Sunday, June 21, 2009
It starts today
The day has finally arrived. I get admitted to the hospital today. This last week was spent at Stanford going through all my final outpatient appointments, getting the line placed in my chest (outpatient procedure) for all the drugs to soon be administered, ect. I thought by now I'd be more nervous about all the is going to transpire but I'm not. Maybe when the radiation and chemo type agents beginning tomorrow it will set in. For the moment, seems like "just another day at the office" with the ongoing battle of cancer. It's interesting, having lived with cancer for 13 years, it is just a part of life, experiencing active cancer, treatments, remissions, re-occurrence, ect. You get to the point that you just "go with the flow". The thought of going through this transplant and having a potential cure is still a bit surreal. I look forward to that day a year or so away when the doctor says, "there is no sign of cancer in your body, with a solid chance it will never reoccur". It will be like getting a new lease on life. Even if that doesn't happen, I have no complaints. I've been blessed with 52 great years, a wonderful family, and happiness in life. What more could one ask for. Next time I make a post might not be feeling so good. But that is just life, taking the good times with the not so good. It all adds to the pallet of life, full of color and joy.
Friday, June 12, 2009
Last day at work
Today was my last day worked prior to my transplant. The support from the entire Department today has been a bit overwhelming and humbling. It's amazing to see how many people truly care and offer their support and prayers. My place of employment has become my home away from home. I care deeply for everyone I work with and their support is very uplifting. In life we don't have to "go it alone" and with the support from work, home, family and friends, my odds for success go up exponentially. I'm leaving today with a bit of emotion, knowing it will be a while until I can return. I will stay in contact and look forward to celebrating when I get to come back and once again enjoy the support, care, and friendship of those I work and serve with.
Thursday, June 11, 2009
Teaching for transplant
6-9-09 - Went to 2 classes today at Standford in preparation for the transplant and to be better educated on how life will change post transplant. Pretty informative and eye opening. I thought I had done a fair amount of research but definitely learned some new things. At one point it almost got comical. They told me that post transplant I had to be careful about going in the sun. Long sleeve shirts, sunscreen, avoiding mid day sun, etc. I then said, "so this means for the first 3-6 months, correct?" They stated "no, for the rest of your life." My reply, "that's just not possible, I golf". Their reply, "only after 4 pm." I stated, "we need to negotiate." They stated, "no negotiations." I concluded by saying, "I guess that means I won't be moving to Arizona anytime soon." I guess their the boss. Darn. Overall a pretty productive day.
Monday, June 8, 2009
My journey with cancer
Purpose
My name is Michael Noakes, I'm 52 years old and have been battling cancer for 13 years. Howdy, the purpose of this site is to share ongoing communication regarding my life with cancer, where I’ve been, what is going on now, and the pending stem cell transplant to take place for the lymphoma leukemia I have. Life is a blessing and each day is a gift.
Where I’ve been
13 years ago I was diagnosed with fibro sarcoma in my left ankle. 2 surgeries and a year in rehab learning to walk again and I was good as new, just won’t be running in any marathons soon. No chemo or radiation therapy was required.
6 years ago when I was just about to be released by my Oncologist, a bump was found in my neck. A biopsy confirmed a diagnosis of SLL, small lymphocytic lymphoma, and CLL, chronic lymphocytic leukemia. A cancer for which there is no cure, but good potential remission periods. After 9 months of Retuxin (mono clonal antibody) therapy I went into remission. 2 years later it came back. 1 year of chemotherapy took place and I again went into remission. 22 months later it returned again.
Where I am now
After the second reoccurrence took place, it become evident that traditional therapies was only buying me time, each time the cancer coming back stronger. This is when I began researching other solutions and the realization that a stem cell transplant might be an option. After proper authorization, a consult was done at Stanford University in Palo Alto California. It was determined that my form of cancer, current diagnoses, and current overall health made me an ideal transplant patient. My siblings (4 brothers and sisters) did not find a match. However, through the National Bone Marrow Donor Program 4 exact matches were found. The best of the 4 turned out to be a 21 year old male, international donor. I was blessed to have found an excellent donor and on the first try. Legal reasons prevent me from finding out who exactly my donor is for at least a year, if at all. This fine young man will literally save my life, the ultimate gift.
Pre-transplant chemotherapy (called RCHOP) was 3 cycles, 3 weeks apart. By far the most brutal of chemo I have had. Shorter in duration that what I historically got, but more taxing on the body. Despite the side effects, I only missed 4 ½ days of work. I would either come in late or go home early, letting my body tell me when enough was enough. You really get to know your limits, and I tend to push them more, finally conceding when I either can’t get up, or can no longer sit. This disease has taught me to fight, stay positive, and never give up. I believe mental toughness is a key to fighting something that will do anything it can to stay and destroy. Caner can be relentless. It knows no boundaries, has respect for nothing. It does not discriminate by age, sex, nationality or way of life. Its sole purpose is to stay a live, and fight anything thrown at it. At times it wins, for others there is a stay of relief, hopefully allowing life’s natural causes to bring us to the next phase of our existence.
I become an inpatient at Stanford on 6-21-09, with a planned transplant date of 7-3-09. The cure is on the horizon.
Status/feelings
6-5-09 - Sixteen and days and counting before my admission to Stanford. Outpatient treatment begins in 11 days. The reality of this occurring is setting in. I am both excited while having a sense of nervous anticipation. While the mortality rate of the procedure is only 5%, one wonders if you may find yourself in that bucket. Cancer itself has a way of doing that to you. You know it may eventually win, but the thought of beating it is now very real. I need to keep telling myself that the road to recovery is long, as much as a year until you’re back at a consistent normal status. I need to focus on the prize, the ultimate outcome, and not be too caught in the daily and monthly continuation of fatigue and discomfort. It’s a 15 round bout; there will no reprieve when I’m feeling down and out in the 7th round. I need to stay focused on the prize. As I like to say “cowboy up”. Someday I want that put on my tombstone.
My name is Michael Noakes, I'm 52 years old and have been battling cancer for 13 years. Howdy, the purpose of this site is to share ongoing communication regarding my life with cancer, where I’ve been, what is going on now, and the pending stem cell transplant to take place for the lymphoma leukemia I have. Life is a blessing and each day is a gift.
Where I’ve been
13 years ago I was diagnosed with fibro sarcoma in my left ankle. 2 surgeries and a year in rehab learning to walk again and I was good as new, just won’t be running in any marathons soon. No chemo or radiation therapy was required.
6 years ago when I was just about to be released by my Oncologist, a bump was found in my neck. A biopsy confirmed a diagnosis of SLL, small lymphocytic lymphoma, and CLL, chronic lymphocytic leukemia. A cancer for which there is no cure, but good potential remission periods. After 9 months of Retuxin (mono clonal antibody) therapy I went into remission. 2 years later it came back. 1 year of chemotherapy took place and I again went into remission. 22 months later it returned again.
Where I am now
After the second reoccurrence took place, it become evident that traditional therapies was only buying me time, each time the cancer coming back stronger. This is when I began researching other solutions and the realization that a stem cell transplant might be an option. After proper authorization, a consult was done at Stanford University in Palo Alto California. It was determined that my form of cancer, current diagnoses, and current overall health made me an ideal transplant patient. My siblings (4 brothers and sisters) did not find a match. However, through the National Bone Marrow Donor Program 4 exact matches were found. The best of the 4 turned out to be a 21 year old male, international donor. I was blessed to have found an excellent donor and on the first try. Legal reasons prevent me from finding out who exactly my donor is for at least a year, if at all. This fine young man will literally save my life, the ultimate gift.
Pre-transplant chemotherapy (called RCHOP) was 3 cycles, 3 weeks apart. By far the most brutal of chemo I have had. Shorter in duration that what I historically got, but more taxing on the body. Despite the side effects, I only missed 4 ½ days of work. I would either come in late or go home early, letting my body tell me when enough was enough. You really get to know your limits, and I tend to push them more, finally conceding when I either can’t get up, or can no longer sit. This disease has taught me to fight, stay positive, and never give up. I believe mental toughness is a key to fighting something that will do anything it can to stay and destroy. Caner can be relentless. It knows no boundaries, has respect for nothing. It does not discriminate by age, sex, nationality or way of life. Its sole purpose is to stay a live, and fight anything thrown at it. At times it wins, for others there is a stay of relief, hopefully allowing life’s natural causes to bring us to the next phase of our existence.
I become an inpatient at Stanford on 6-21-09, with a planned transplant date of 7-3-09. The cure is on the horizon.
Status/feelings
6-5-09 - Sixteen and days and counting before my admission to Stanford. Outpatient treatment begins in 11 days. The reality of this occurring is setting in. I am both excited while having a sense of nervous anticipation. While the mortality rate of the procedure is only 5%, one wonders if you may find yourself in that bucket. Cancer itself has a way of doing that to you. You know it may eventually win, but the thought of beating it is now very real. I need to keep telling myself that the road to recovery is long, as much as a year until you’re back at a consistent normal status. I need to focus on the prize, the ultimate outcome, and not be too caught in the daily and monthly continuation of fatigue and discomfort. It’s a 15 round bout; there will no reprieve when I’m feeling down and out in the 7th round. I need to stay focused on the prize. As I like to say “cowboy up”. Someday I want that put on my tombstone.
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