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........
Monday, June 29, 2009
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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