I've spent the week with all of the gists in my life--nephrologist, gastroenterologist, hematology oncologist--and got good news across the board. I won the gist trifecta! The best news is that I've achieved a complete hematologic response to the stem cell transplant. The response is categorized into complete, partial and none and is based on whether the M protein is found in urine and the ratio of immunoglobulin free light-chain. Side note: I have done a lot of reading about this disease and still don't understand enough about the cellular biology to explain what that means...I only know it matters.
The reason I know this matters is because of this chart from a 2007 study at the Mayo Clinic...
We analyzed 282 consecutive stem cell transplant patients. A partial hematologic response was achieved in 108 patients (38%), and 93 (33%) achieved a complete hematologic response. Survival rates of patients with complete, partial, or no response were significantly different, even after eliminating bias from early death. The degree of response was affected by the intensity of chemotherapy conditioning, septal thickness, and cardiac biomarkers. Hematologic response translates to longer survival.Dr. Efebera also said that my liver may reduce by 1/3rd over time to that will help with some of my bloating and pain. A med school student was shadowing her during the appointment and she was showing him some of my CT scans and how large my liver was. Normal liver span is about 13 cm and mine measured 24 cm in December and I'm sure its gotten bigger since then. He asked if he could feel my liver and I said, "Go ahead. I'm a little bit of a medical freak show where my liver is concerned." I told him I have this mental image of a liver shaped Godzilla wreaking havoc throughout my abdomen metaphorically pulling down phone wires and smashing buses with screaming people inside.
I had an IV infusion of Zometa after my appointment with Dr. Efebera. It only took 15 minutes for the infusion but toward the end, I developed pretty severe chest pain, throat tightening and pain in my ears. These are all known side effects of the medication. My nurse paged the nurse practitioner, Tammy, who is one of my medical buddies. We joke around a bit in our emails to one another and she's a lot of fun. She walked into the room and said, "What are you doing to me?" I replied, "The real question is what are you doing to me?" She said I had a good point there.
So, after some IV benadryl followed by some IV steroids, I was back to normal and went to work.
My appointment with my nephrologist, Dr. Samir Parikh was pretty uneventful. We talked about reducing my diuretics over time to lessen the load on my kidneys. After all the fluid issues before and during my hospitalization, I'm very reluctant to change those, almost irrationally so. The good thing about Dr. Parikh is that he listens to my concerns and will change his recommended course of action.
He talked about how well my recovery has gone and how hard I've worked to regain my strength. He told me I should go out to patient groups and give talks on how to recover effectively from serious disease. Maybe I won't do that, but I think I might have a book inside me that might cover that. I just need to get with some of my friends who are published authors--Fr. Stephen, Bonnie and Jim (soon to be published I'm sure)--to figure out how to get that book out of my heart and head and into the computer.
My appointment with my gastroenterologist went well also. As I've said before, Dr. Levin is my main man, the top gist, since he diagnosed me and was the one to get all the gists on the same page when I had so many fluid issues in the hospital and they were looking a little like Keystone Cops.
No new good news, but no bad news either. He thinks my abdominal bloating is due to damage from the disease and chemo and may improve over time as the amyloids clear out of my GI tract. He is still concerned about the size and firmness of my liver. There's one part of my liver that is really prominent (medical term for really sticks out) just below my rib cage on the left side. Every time he plapates that area, he gets this really squinty look on his face I interpret as "this just isn't right." My liver function tests are all still really good and the ultrasound from June showed the blood flow is good through the liver. Obstructed blood flow is one of the early indications of a damaged liver.
I've had some variation in some of the key measures in the liver function test. Over the last 2 months, 2 key components had been creeping up steadily--46, 51, 53, 58, 64 and then back down to 43 this week. I asked Dr. Levin about it and he characterized it as insignificant variation. I think I need to get all my old hepatic function tests and start building some control charts for my liver function. Time to go 3-sigma on my liver so I can see when the process starts to get out of control. Problem is, I'd need to hire someone to do the data entry from the 250 pages of lab results I have on paper from my hospitalization.
Dr. Levin did order an MRE of my liver. No, that's not a typo for an MRI, it's a test called a Magentic Resonance Elastography. It's a non-invasive way to detect hardening of the liver. Its still a non-standard test at OSU so he has to get with the Radiologist and Physicist to get my appointment scheduled.
Dr. Efebera didn't seem to think there was much point in doing the test because there's no change in treatment depending on the results. I hear Dr. Tom Bishop, statistics professor not medical doctor, talking about the Axiom of Action "in research, theory is developed, experiments are conducted, and data are collected and analyzed to generate knowledge to form a rational basis for action." He's breaking one of Dr. Bishop's basic rules---if you're not going to change something in response to the data, there is no value in collecting it. This test could go a long way in putting my mind at ease or causing me to freak out.
The reason it might freak me out is because if it shows my liver is hardened, its another indication of damage but there's nothing we can do about it. I think one of the reasons my recovery has gone so well is because I have more than optimism, I have HOPE. The difference, according to a Dr. Shane Lopez, the world's leading expert on hope according to Gallup Corporation (his employer), is that optimism is thinking “that the future will be better than the present,” while hope is thinking “that the future will be better and that you have a role in making it so.”
But, if I go back to my faith, our hope is in Christ Jesus. So even if it shows hardening, I will have a role in making the future better than the present. In this case, it will be through prayer which, time after time, God keeps pointing me back to prayer as the only action needed from me.
Weekend before last, Claire and I were in San Diego for some lacrosse stuff. It brought back memories of my last trip to San Diego. It was February of last year for a meeting of the Teradata Partners Steering Committee. Its a group of folks who plan the conference for the database platform and applications most often used by the top companies around the world.
During that trip I became firmly convinced that there was most definitely something wrong with me. My stomach hurt so bad that I had to miss one full day of meetings because I couldn't leave my room and couldn't find anything to eat that I could tolerate. The trip to San Diego last year was miserable but the trip this year was so enjoyable. It was very normal (understanding that normal for me means a high degree of fun is involved.) I got to stay with my dear friends Danielle and Greg, get to know their children Anna and Ryan, watch Claire play lacrosse, hang out with Claire at the La Jolla glider port, go to the beach and I even had a margarita. What's not to like?
I've been thinking a lot about the days before and after my diagnosis. I'm a big fan of consciously taking a retrospective view from time to time to really look at the progress that's been made. I've come so far physically, spiritually and emotionally from that time last February and March. The days following the diagnosis I was like a boxer who had just received a flurry of heavy punches from an opponent--stumbling around the ring with no idea as to which corner I should head.
But I got my feet back under me and my mind cleared so I could continue the fight. Some people think I have an incredible amount of strength to undergo all the tests and treatments I have. Its nothing more than keeping my eyes on the prize--a day when I'm in remission and the effects from the disease are insignificant. I think about Peter stepping out of the boat. He was fine when he kept his eyes on Jesus and was able to overcome the dangerous physical forces all around him. Once he took his eyes off the prize, he was overwhelmed by his situation and sank. Its in my best interest to keep looking to the future--where my hope is in Christ Jesus.
Every test, every treatment puts me one step closer to that day. I think of my friend Robyn who died a few weeks ago from pancreatic cancer. I have the opportunity to fight, she doesn't. So if my life involves lots of medical activity...well, it means I'm still alive. They don't give IVs to dead people.
So, tonight, as I prepare to turn 6 months old, I am filled with thanks--for a loving God, for all the my friends and family who have been so diligent in prayer and positive vibes, for my medical team, for so so many things. I'm alive, I'm getting back to normal and I've got a great prognosis. Oh, how I've grown these 6 months!
Dr. Efebera didn't seem to think there was much point in doing the test because there's no change in treatment depending on the results. I hear Dr. Tom Bishop, statistics professor not medical doctor, talking about the Axiom of Action "in research, theory is developed, experiments are conducted, and data are collected and analyzed to generate knowledge to form a rational basis for action." He's breaking one of Dr. Bishop's basic rules---if you're not going to change something in response to the data, there is no value in collecting it. This test could go a long way in putting my mind at ease or causing me to freak out.
The reason it might freak me out is because if it shows my liver is hardened, its another indication of damage but there's nothing we can do about it. I think one of the reasons my recovery has gone so well is because I have more than optimism, I have HOPE. The difference, according to a Dr. Shane Lopez, the world's leading expert on hope according to Gallup Corporation (his employer), is that optimism is thinking “that the future will be better than the present,” while hope is thinking “that the future will be better and that you have a role in making it so.”
But, if I go back to my faith, our hope is in Christ Jesus. So even if it shows hardening, I will have a role in making the future better than the present. In this case, it will be through prayer which, time after time, God keeps pointing me back to prayer as the only action needed from me.
Weekend before last, Claire and I were in San Diego for some lacrosse stuff. It brought back memories of my last trip to San Diego. It was February of last year for a meeting of the Teradata Partners Steering Committee. Its a group of folks who plan the conference for the database platform and applications most often used by the top companies around the world.
During that trip I became firmly convinced that there was most definitely something wrong with me. My stomach hurt so bad that I had to miss one full day of meetings because I couldn't leave my room and couldn't find anything to eat that I could tolerate. The trip to San Diego last year was miserable but the trip this year was so enjoyable. It was very normal (understanding that normal for me means a high degree of fun is involved.) I got to stay with my dear friends Danielle and Greg, get to know their children Anna and Ryan, watch Claire play lacrosse, hang out with Claire at the La Jolla glider port, go to the beach and I even had a margarita. What's not to like?
I've been thinking a lot about the days before and after my diagnosis. I'm a big fan of consciously taking a retrospective view from time to time to really look at the progress that's been made. I've come so far physically, spiritually and emotionally from that time last February and March. The days following the diagnosis I was like a boxer who had just received a flurry of heavy punches from an opponent--stumbling around the ring with no idea as to which corner I should head.
But I got my feet back under me and my mind cleared so I could continue the fight. Some people think I have an incredible amount of strength to undergo all the tests and treatments I have. Its nothing more than keeping my eyes on the prize--a day when I'm in remission and the effects from the disease are insignificant. I think about Peter stepping out of the boat. He was fine when he kept his eyes on Jesus and was able to overcome the dangerous physical forces all around him. Once he took his eyes off the prize, he was overwhelmed by his situation and sank. Its in my best interest to keep looking to the future--where my hope is in Christ Jesus.
Every test, every treatment puts me one step closer to that day. I think of my friend Robyn who died a few weeks ago from pancreatic cancer. I have the opportunity to fight, she doesn't. So if my life involves lots of medical activity...well, it means I'm still alive. They don't give IVs to dead people.
So, tonight, as I prepare to turn 6 months old, I am filled with thanks--for a loving God, for all the my friends and family who have been so diligent in prayer and positive vibes, for my medical team, for so so many things. I'm alive, I'm getting back to normal and I've got a great prognosis. Oh, how I've grown these 6 months!
No comments:
Post a Comment