Today, May 25, 2013, is the two year anniversary of my first bone marrow biopsy (BMB). I note this because it was a particularly painful experience for me.
I had been discussing blood test results that day with my hematologist, Dr. Rabinowitz. I was a little nervous, because the results looked a bit ominous. Something was definitely wrong, and I was probing for answers. He was getting annoyed with me for persistently asking what he must have assumed were stupid questions. In retrospect, I am questioning the wisdom of taking a confrontational stance with him just before allowing him to plunge a large needle into my pelvis. I don't know if there is any correlation there, but boy did that hurt!
When I started treatment at the Farber in July 2011, the first procedure I had to undergo was another BMB. Bummer! Needless to say, I was more than a little trepidatious about this. To my relief, however, the procedure, while uncomfortable, was not nearly as bad as my first experience. I have subsequently undergone three more BMBs at the Farber, and all of them have been quite tolerable. I no longer fear the procedure, not that I would volunteer for it, mind you. Fortunately, as long as I stay in remission (knock on wood), I shouldn't need to undergo a BMB more than once a year.
A recent article in the Boston Globe featured a Cambridge-based company called GNS Healthcare, which is pioneering the use of "Big Data" analytics to healthcare. This involves using enormous computer power to crunch troves of information on patients, diseases, and medical outcomes collected by medical providers, insurers, and others. Hopefully, this will eventually lead to personalized treatment for various diseases, including cancer.
GNS uses artificial intelligence algorithms developed out of chaos theory to determine what treatment made the crucial difference for each patient and what is likely to work best for the next patient. The approach is to try to reverse engineer the mechanisms that give rise to the data to determine cause and effect relationships. As genetic profile data becomes more available and cheaper to collect, this approach will become much more powerful by using individual genetic information at the molecular level.
What I found most interesting about the article is that GNS is working with DFCI and Mt. Sinai Medical School to build a computer model of Multiple Myeloma! The objective is to better understand what works well for patients today, as well as develop more effective personalized MM treatments in the future. This is exciting stuff!
For anyone interested in following up on this, the article was written by Globe correspondent, Karen Weintraub, and appeared in the Business Section of the May 15 Boston Sunday Globe. Here is a link: Big Data Can Personalize Healthcare
Saturday, May 25, 2013
Tuesday, May 14, 2013
Back to the Farber
Today was my monthly visit to the Farber. As usual, I dutifully collected my 24-hour urine sample yesterday. Having no "official" containers on hand, I opted to use an empty half-gallon plastic milk bottle for the purpose. The last time I did that, the blood draw nurse asked me whether I was bringing her a present of apple cider. Very funny. Today, however, there was no record in the computer that they were expecting me to bring in a sample. That was interesting. I decided to look into this further during the day.
My appointment with Dr. Richardson was for 2:00, but I had no illusions about my wait time. I downloaded a couple of games to my iPhone (Word Jigsaw and Sudoku Killer). I had plenty of time to play both while we waited. There was a Chinese family in the waiting room. I didn't get to talk to them much (their English was limited), but they had flown in from China to get treatment at the Farber for their father. Wow! That really puts the one-hour drive I have to get there in its proper perspective. How fortunate am I to have DFCI almost at my doorstep. I never complain about the traffic going in or out. Just think if I had to come from China.
My blood test results came back pretty good. MY WBC, HCT, and Hgb have all improved, and my red blood cell count (RBC) is 4.18, almost up to the normal range of 4.2. Also, my platelets are up to 185, and, most importantly, my absolute neutrophil count (ANC) jumped to 1.95 from 1.65 last month, which is almost in the normal range. The only number that concerned me is that my bilirubin jumped up to 2.1, the highest it's ever been. A high bilirubin count could be a sign of a liver problem. However, when I met with Muriel, she said everything looked fine and for me not to worry about it. OK then, I won't.
I also got the radiology report back for my skeletal survey from last month. In the summary it said, "Multiple left-sided rib fractures, given linear appearance, likely post-traumatic. These may be related to the fall described last summer...". Apparently I broke my left 4th through 8th ribs on my historic fall from the ladder, which might help explain why I could hardly move for about 2-3 months afterwards. Of course now that that's healed, it's nothing to worry about now.
The blood test results were encouraging, but the most exciting news I got today was that I no longer have to provide a 24-hour urine sample every month! I only have to do this every 3 months from now on. Hooray! Whoopeedoo! This may not sound like a big deal, but I have to tell you that this urine collection thing is a real pain in the ass. Just carrying the brown paper bag in with everybody nodding knowingly, "I know what's in there", kinda sucks. Also, trying to remember not to pee in the toilet (or the woods for that matter) for a whole day is quite a challenge. A partial weight has been lifted. Hallelujah!
Still awaiting Dr. Richardson, I went for my Zometa infusion. Just as that was finishing, Dr. Richardson arrived at 4:40 pm. Tada! Only 2 hours and 40 minutes late. No surprise there. It was really great to see him after all these months. He assured me that he is keeping close track of my progress from Mary, his nurse, and he is always available when needed. He thinks I'm looking great, that my numbers look fine, and he is optimistic that I will stay in remission for quite a while. He also said not to worry about the radiology report, as it has no relevance to the MM. No lesions or focal lucencies, which could be caused my MM, were noted. Some of the stuff in there, like "extensive vascular calcifications" are normal for someone my age. It's nice to no that I'm normal for an old fart.
He is also very enthusiastic about some of the recent clinical trial results, especially, pomalidomide, which should provide an even better alternative to Revlimid, should that stop working for me sometime in the future. It was very uplifting to see him again. Screw the long wait! It was a good day.
My appointment with Dr. Richardson was for 2:00, but I had no illusions about my wait time. I downloaded a couple of games to my iPhone (Word Jigsaw and Sudoku Killer). I had plenty of time to play both while we waited. There was a Chinese family in the waiting room. I didn't get to talk to them much (their English was limited), but they had flown in from China to get treatment at the Farber for their father. Wow! That really puts the one-hour drive I have to get there in its proper perspective. How fortunate am I to have DFCI almost at my doorstep. I never complain about the traffic going in or out. Just think if I had to come from China.
My blood test results came back pretty good. MY WBC, HCT, and Hgb have all improved, and my red blood cell count (RBC) is 4.18, almost up to the normal range of 4.2. Also, my platelets are up to 185, and, most importantly, my absolute neutrophil count (ANC) jumped to 1.95 from 1.65 last month, which is almost in the normal range. The only number that concerned me is that my bilirubin jumped up to 2.1, the highest it's ever been. A high bilirubin count could be a sign of a liver problem. However, when I met with Muriel, she said everything looked fine and for me not to worry about it. OK then, I won't.
I also got the radiology report back for my skeletal survey from last month. In the summary it said, "Multiple left-sided rib fractures, given linear appearance, likely post-traumatic. These may be related to the fall described last summer...". Apparently I broke my left 4th through 8th ribs on my historic fall from the ladder, which might help explain why I could hardly move for about 2-3 months afterwards. Of course now that that's healed, it's nothing to worry about now.
The blood test results were encouraging, but the most exciting news I got today was that I no longer have to provide a 24-hour urine sample every month! I only have to do this every 3 months from now on. Hooray! Whoopeedoo! This may not sound like a big deal, but I have to tell you that this urine collection thing is a real pain in the ass. Just carrying the brown paper bag in with everybody nodding knowingly, "I know what's in there", kinda sucks. Also, trying to remember not to pee in the toilet (or the woods for that matter) for a whole day is quite a challenge. A partial weight has been lifted. Hallelujah!
Still awaiting Dr. Richardson, I went for my Zometa infusion. Just as that was finishing, Dr. Richardson arrived at 4:40 pm. Tada! Only 2 hours and 40 minutes late. No surprise there. It was really great to see him after all these months. He assured me that he is keeping close track of my progress from Mary, his nurse, and he is always available when needed. He thinks I'm looking great, that my numbers look fine, and he is optimistic that I will stay in remission for quite a while. He also said not to worry about the radiology report, as it has no relevance to the MM. No lesions or focal lucencies, which could be caused my MM, were noted. Some of the stuff in there, like "extensive vascular calcifications" are normal for someone my age. It's nice to no that I'm normal for an old fart.
He is also very enthusiastic about some of the recent clinical trial results, especially, pomalidomide, which should provide an even better alternative to Revlimid, should that stop working for me sometime in the future. It was very uplifting to see him again. Screw the long wait! It was a good day.
Friday, May 10, 2013
Richardson Appointment
It's been a while since I've updated this blog. I don't know why, except that nothing of major significance has transpired. Gretchen is continuing her slow but steady recovery from her mishap. She is frustrated by her obvious impairments, but it's amazing how quickly she has regained much of her function. She still has dizziness and tires easily, but she has started back to her psychotherapy practice, which seems to be going well.
Gretchen has "graduated" from all her rehab therapies, and her only restriction now is that her neurologist has told her that she can't drive until 6 months after her craniotomy . Shit! That really sucks for both of us. It's not because she is neurologically impaired. Her OT therapist even wrote a note to Dr. Whitlock saying that she thinks Gretchen is OK to drive. However, he said that there is a 20% chance of seizure within the first year of a craniotomy, so he doesn't want her to take a chance of its happening while she's driving. I went online and found some sites that recommended 3 months before driving. I think maybe we will have another confab with the doctor on this. Gretchen is going stir crazy without having her freedom to drive, and I would feel the same way myself. This is starting to become the major issue in both of our lives.
However, Dr. Whitlock said that the probability of a seizure reduces exponentially from the time of the operation. OK, now I an an engineer (or at least I used to be), so that tells me that most of the risk is concentrated in the first few months after the surgery. I used to know how to do all this stuff, but it figures that after 6 months, the probability of a seizure has dropped significantly. (I invite all you techies out there to compute exactly what the probability is after 6 months for an exponentially declining probability density with a cumulative probability of 0.2 after one year.) I'd do it myself but I'm tired. Besides, it's late and it's too much work. Maybe tomorrow. OK, Steve and Bernie (college roommates), step up to plate here if you will.
Tuesday, Gretchen and I are going back to the Farber for my monthly checkup and Zometa infusion. Dr. Richardson's nurse, Mary, is on vacation, so I actually get to see Dr. Richardson for the first time in about 8 months. Yay! What a privilege! My appointment is at 2:00, which means we will probably be waiting for 2 or 3 hours before we we actually see him. I plan to bring my Kindle Fire and laptop to keep me amused during the wait. I plan to have a few pent up questions for him since it has been a long time since our last meeting. I have no reason to complain. If I was really sick, I'm sure I would be seeing him every month, so it's all good.
I'm still trying to get to the gym on a regular basis. My latest kick is to try to find some exercises that will help my golf game. I hate the fact that I can't hit the ball very far anymore, so I talked to the personal trainer about specific exercises to help with that. I'm on a roll now, so my golf buddies just better watch out. I'm going to turn myself into a lean mean golfing machine. Yeah, right. I can fantasize, can't I?
Gretchen has "graduated" from all her rehab therapies, and her only restriction now is that her neurologist has told her that she can't drive until 6 months after her craniotomy . Shit! That really sucks for both of us. It's not because she is neurologically impaired. Her OT therapist even wrote a note to Dr. Whitlock saying that she thinks Gretchen is OK to drive. However, he said that there is a 20% chance of seizure within the first year of a craniotomy, so he doesn't want her to take a chance of its happening while she's driving. I went online and found some sites that recommended 3 months before driving. I think maybe we will have another confab with the doctor on this. Gretchen is going stir crazy without having her freedom to drive, and I would feel the same way myself. This is starting to become the major issue in both of our lives.
However, Dr. Whitlock said that the probability of a seizure reduces exponentially from the time of the operation. OK, now I an an engineer (or at least I used to be), so that tells me that most of the risk is concentrated in the first few months after the surgery. I used to know how to do all this stuff, but it figures that after 6 months, the probability of a seizure has dropped significantly. (I invite all you techies out there to compute exactly what the probability is after 6 months for an exponentially declining probability density with a cumulative probability of 0.2 after one year.) I'd do it myself but I'm tired. Besides, it's late and it's too much work. Maybe tomorrow. OK, Steve and Bernie (college roommates), step up to plate here if you will.
Tuesday, Gretchen and I are going back to the Farber for my monthly checkup and Zometa infusion. Dr. Richardson's nurse, Mary, is on vacation, so I actually get to see Dr. Richardson for the first time in about 8 months. Yay! What a privilege! My appointment is at 2:00, which means we will probably be waiting for 2 or 3 hours before we we actually see him. I plan to bring my Kindle Fire and laptop to keep me amused during the wait. I plan to have a few pent up questions for him since it has been a long time since our last meeting. I have no reason to complain. If I was really sick, I'm sure I would be seeing him every month, so it's all good.
I'm still trying to get to the gym on a regular basis. My latest kick is to try to find some exercises that will help my golf game. I hate the fact that I can't hit the ball very far anymore, so I talked to the personal trainer about specific exercises to help with that. I'm on a roll now, so my golf buddies just better watch out. I'm going to turn myself into a lean mean golfing machine. Yeah, right. I can fantasize, can't I?
Subscribe to:
Posts (Atom)