The following was written by my father Scott Bledsoe, on February 28, 2009....about one month after my bone marrow transplant. We have meant to put this in our blog for quite some time now, and after reading it for the first time today.......I really wish we would have posted it sooner!! But....better late than never!
Wednesday, October 21, 2009
Tuesday, October 13, 2009
Today, I had my second GVHD evaluation at SCCA. I arrived at SCCA this morning around 8am for a routine blood draw and another GVHD eval. After my blood draw, I sat upstairs in the floor 6 waiting area looking out at the amazing view of Lake Union and Seattle. I had about 45 minutes until my 9am appt. and I started thinking about where I was at about one year ago. I had just begun radiation treatment at the UW to try and get rid of the Leukemia in my spinal fluid. This was a 12 day treatment schedule with about a half-hour of radiation each day. Needless to say looking back now, this was effectively the beginning of an extremely demanding stretch of time. The biggest demands were in the physical changes that occurred during and following radiation treatment.
I began to develop mucositis on or around the 6th or 7th treatment.....at least I started noticing a change with my esophagus and my ability to swallow. Pain began to set in slowly at first.......and then about a week later around the end of treatments it was getting "very" painful. I was developing a lot of nausea at that time, and I started to become unable to eat solid food.
About 2 or 3 days after my treatment ended, the pain was so unbearable that I begged Mandy to take me to the hospital at around midnight. I was admitted to UW at that time, and was not discharged until about 7 weeks later!! This stretch of time was physically and mentally the "most" difficult period of time for me. I could not eat.....swallow pills, and upon finding out that the radiation didn't even work I was trying to figure out what I could possibly look at for positives. Things seemed extremely bleak, and the main reason I was able to forge on was my wife by my side. Now I have many people that I drew strength from during "all" of my recovery, but during this time specifically....... Mandy was my everything!...... and the main reason I was able to wake up each day and fight against this brutal disease. Seeing her by my side....constantly.....reminded me why I needed to beat this!
During this time my food was pumped in through my Hickman line into my bloodstream. My food was called TPN, and it was a 24 hour supply of liquid with nutrients. This for all intents and purposes is what I lived on during that time......the nurses, nutritionists, Mandy, my mom, etc.... all urged me on to eat other things but for me it was so difficult and I was not able to eat much of anything. This was the start of losing about 40+ pounds over 3.5 months, and I will never forget the intensity both physically and mentally!
Also during this time is when I developed a "foot neuropathy"...called Foot Drop. About my 3rd night at UW, I fell asleep in an awkward position on a morphine drip, and woke up about 6 hours later in a lot of pain! I also noticed I could not feel my left foot. As I began to search through the fogginess of discovery.......I noticed that I could not lift my foot upwards. I also noticed that my foot was numb on top, and the numbness ran all the way up the outside of my left leg to my calf. Walking became difficult at that time and a physical therapist was able to get me a brace which allowed my foot to lift automatically for me. It held my foot at a 90 degree angle with my shin, and every step the brace allowed the front of my foot to "lift".
I could go on..........but the memories seem endless.........anyways it was about time to concentrate again on today and my GVHD evaluation. I was able to see the Long Term Follow Up specialists at SCCA today around 9am, and they inspected my skin, eyes, mouth, mobility, and we all came to the conclusion that my GVHD symptoms have not progressed and had in fact improved slightly. However, this GVHD is something that even if you have just mild symptoms.....you need to pay extremely close attention to any changes. I have received my instructions for things to watch for, and will be paying very close attention to any changes specifically with my eyes, mouth, and skin. The doctor had a good analogy for me to think about. GVHD is like a burning house.........if the fire is only in the fireplace, its all good........but if the fire is spitting out cinders, its time to call for action! GVHD treatment can prevent damage, but GVHD damage cannot be repaired. An example is your eyes ability to produce "tearing". If you lose that ability due to GVHD damage, it is unfixable..........and your eyes will be dry and uncomfortable always. With all of this in mind.........I left SCCA very happy that my GVHD had not progressed, but very thoughtful about "all" I need to pay very close attention to.
I hope all of those reading this find themselves doing well, forging on, and are looking forward to all of the positive things that surround each of us every single day! I care about all of you and hope things are going well!
Thursday, October 8, 2009
Today, I heard the very sad news that another friend of mine has been diagnosed with a blood cancer. Each time I have heard this kind of news, my heart breaks a little bit more. It seems that the speed of this news is increasing, which makes me nervous. I am thinking more and more about my environment and whether or not I have increased my risks through choices there....
In any case, I ask you to join me in praying for my friend, a truly beautiful woman, as she and her family learn to accept this difficult news and begin her treatment.
Wednesday, October 7, 2009
I was fortunate yesterday to be able to spend a full day with Hans, as we traveled down to Portland to ask some important questions about his CML. We were able to catch up quite a bit, and rehash good times and bad times. Hans and I have known each other for the better part of 10 years now, and been through quite a bit......especially recently. We met through soccer years ago, and have shared many good times. I think most everyone that visits this site probably knows by now, that Hans was diagnosed with CML last fall when I was at the beginning of my transplant preparation.
When Mandy told me that Hans had CML, I was completely dumbfounded......and it felt like a train had just driven through me! I instantly and for quite a long time thought about everything Mandy and I had gone through about hearing the news at my diagnosis, as well as thinking about everything Hans, Cynthia and his family must be feeling upon hearing that news. It was really quite devastating, especially considering I was in pretty bad shape psychologically at the time anyway. It was so strange that now along with our friend Darren Rozendaal who had gone through a transplant about 5 years ago now, we now have 3 guys from the same soccer team facing the challenge of cancer at such a young age. It seemed and still does seem unreal to me!
Back to the road trip...........Hans had scheduled a visit with a doctor in Portland who is the author of a clinical trial with a 3rd generation CML drug that is currently being tested in approximately 40 patients with some very good signs. He wanted to discuss the trial with this doctor and not only see if he would be a good candidate, but get some thoughts on his journey with cancer so far. Hans is very much ahead of the game when it comes to this battle, as he has done an amazing job researching, tapping into others experiences, joining CML groups online, and anything he can to be at the forefront of the battle against CML. I was so impressed with his questions, his candor, and his preparation for the meeting with this doctor. I'm not sure why, because I should expect it from him. His reasons for checking on this are that he has not shown a cytogenetic response to Gleevec or Sprycel, and must now consider his next direction.
We really do hate that we have this in common, but there is nothing we can do about that but fight on together with our family and friends. I think in some ways it has made the challenge of fighting cancer easier to deal with, but in other ways it has made it more difficult. Sometimes too much information can weigh heavily on the mind. I know what he, Cynthia, and his family are going through right now and it is very unpleasant to deal with. We discussed yesterday that everyone in one way or another has, is having, or will have to deal with something similar or much worse in their lifetime. With that in mind we choose to move forward and deal with each challenge as it comes.
I am very confident that Hans will recover from CML, and join Darren and I and countless others as "Survivors". I would like to ask everyone that reads this post to send positive thoughts to Hans and his family as they deal with these challenges.
Next week I will be going to my one month check-up for signs of GVHD at SCCA. At that time they will probably determine if the GVHD is progressing and whether or not we need to treat it with immunosuppressants. Prednizone was mentioned as a drug I may be taking, and I will have an update next week after I find out the next steps. It is good in many ways that I have some GVHD, because it means that my father's bone marrow is prepared to battle anything foreign to it.....not only my body, but any Leukemic cells that may try to come back. It is a fine line treating GVHD, because you dont want to treat it so strongly that your immune system becomes too weak again but you must treat it some to prevent it from getting out of hand and damaging organs, eyes, and other important body parts.
I also had a visit with my oncologist at Puget Sound Cancer Care (so nice being back with them)........and my blood results(white blood cell count, red blood cell count, and platelets) look great........my chemistry panel, Potassium, Magnesium, etc.... all look great. Some other things that have been slightly out of whack are normalizing, and overall things are looking really good. The amount of medicine I have to take has been getting less and less, and I've been feeling good overall for awhile now. My visits to the doctor are approximately every 2-3 weeks now, and I will be having my one year checkup (post transplant)at SCCA in mid-January. At that time they will do a full inspection, and I believe a bone marrow aspiration to see if Im still 100% my donors bone marrow and cancer free. They did do a couple of these post transplant already, and I am at this point "cancer free", and 100% my father's bone marrow! I know I am repeating myself, but it is still very exciting! Next I am looking forward to becoming a contributing citizen again, and returning to work hopefully a couple months from now. Fingers crossed!
Sorry to be so long winded, but yesterday really rekindled many thoughts past and present!
Tuesday, October 6, 2009
Does your work have something similar? If so, hopefully you get the opportunity to donate blood yourself! If not, I encourage you to find a blood drive near you. The life you save might be a friend's!
Monday, October 5, 2009
If you are in the Everett area on Tuesday, October 6th, please consider donating blood at my office! We have a blood drive that still needs a few more donations between the hours of 9 and noon. To reserve a spot for yourself, please click here or give me a call.
Thanks for your willingness to help!
Saturday, October 3, 2009
Hey everyone!! I want to thank everyone so much for donations for this years walk, and thank all of those able to join us for the walk itself! I know many of you werent able to make it for various reasons, and we want you to know we understand of course. For all of those praying, and sending positive thoughts for my continued recovery from this disease......thank you! My recovery has been slowed slightly with the onset of some GVHD symptoms, but we will be dealing with those symptoms and treating them accordingly as time goes on. I wont have an update on that until probably after Oct. 13th.......my next appt. with SCCA.
I am hoping to have enough strength, stamina,and knowledge that working around soils, plants, etc...will be safe on a daily basis to allow me to go back to work sometime in either December or January. I will know more hopefully by early November.
Right now I fill my time with trying to stay as active as possible. Last night I even went and attempted to play soccer. I played goalkeeper, and my agility was pretty lame......but it was great to be out there and I'm glad I did it! Hopefully my teammates will bear with me as I regain my strength in my left leg (calf specifically). Im hoping I can be somewhere around 75% of my old self by next spring. I think I will need to do a lot of running, walking to get to that point. The bottom line for me was just being out there, and seeing good friends again!
Mandy mentioned my golf score of 74, which was by far my best score relative to par ever (+3), my previous best was (+9), but she didnt mention my score at Alta Lake near Chelan where I shot a 101 (+29) or my average score this year which is more around (+16-18). Golf is an extremely humbling game, but the humility is worth it because of the challenge! There is something very special about being outside, walking with friends, razzin each other, and hitting that stupid ball that makes the difficult parts of the game so worthwhile.
Once again, thank you to everyone who contributed to Team Firefly this year. We really appreciate it!!