This past week, a couple of incidents helped renew my faith in the basic goodness of human nature, despite the deranged actions of the brothers who bombed the Marathon. On Wednesday, we went into Boston to see the Big Apple Circus, the first time I have seen a real circus since I was a kid. It was a real blast. On our way in, we parked in a garage near City Hall, but because of the events of the previous week, there was a policeman monitoring all the cars entering the garage. He began talking to us amiably, and when we thanked him for all the police had done in the aftermath of the bombing, his response was, "You people are great!". We were puzzled at first, but then we found out he was a New York cop who came to Boston after the Marathon to help, and he really liked the people in Boston he had met. We had a wonderful conversation.
This was a little hard for me to take in. After all, he was from the home of the Evil Empire, the hated Yankees, not to mention the (ugh) Jets, and the (gasp) Giants. The Yankees even played the Red Sox theme song, "Sweet Caroline" at their next home game after the bombing. Aargh! What was I to do with this? Where is the room for hate? How could I look at a "Yankees Suck" bumper sticker after this without some feeling of shame? Now that I know that the bomber brothers were planning to go to New York next to blow up Times Square, there is kind of a newly-sprung bond between the cities now. Not that I would rush out onto the field to give ARod a hug or anything, but the world is full of some really good people, even New York. ;-)
Then today, we met a young 21-year-old waiter named Patrick at the Beach Coma (catch that Boston accent?) restaurant on Plum Island. It was a beautiful day and he was so happy, outgoing and convivial. It was clear that for him, today was a great day to be alive. Talking to him further, we found out that he is legally blind and has serious leg problems, as well as nerve damage to his arms and hands. It turns out he was a victim of Lyme Disease at the age of 14, which left him permanently damaged. It took the doctors a year and a half to properly diagnose him.
Don't get me started on Lyme Disease! The medical community really sucks on this one. Their ignorance on this is shameful and inexcusable. Having gotten Lyme Disease twice, I have personal experience of their ineptitude. I have vented on this subject before, so I won't go on, but here is just another sad consequence of their willful ignorance of this pernicious disease. When Patrick was finally diagnosed, he needed a central catheter to deliver antibiotics directly into his heart to help him recover.
One might think that he would be somewhat embittered by his fate. But not so. Gretchen told him she believes everything happens for a reason, and he totally agreed. Before his sickness, he was a hockey player, but when he couldn't do that any more, he turned to music, which is now his first love. He feels it was meant to be. Talk about the power of positive thinking! Here was a nearly blind, partially crippled young man who was happy and exulting about just being alive on this beautiful day.
Attitude is everything. Gretchen's quick recovery from her brain injury was helped immensely by her positive outlook. And for myself, I have always had an optimistic outlook on my condition.
When I was a kid, I was different. Whenever I got sick, I used to whine, "Why did this have to happen to me?" I was a little spoiled brat back then. If could go back, I would smack myself upside the head. Fortunately, I outgrew that childishness. Since my diagnosis with Multiple Myeloma, I never have defined myself solely as an MM patient, but rather I am just a person who happens to have MM. It's a big difference. It is just something to deal with as best I can. I don't mean to imply that I am doing well right now because of a good attitude. No, I give the Farber credit for that. But I never succumbed to a "poor me" attitude. The glass is half full. Regardless of what happens, I plan to live whatever days I have left to the fullest. I hope I can always be like Patrick.
Saturday, April 27, 2013
Monday, April 22, 2013
One Week Later
The events of the last week have been devastating and traumatic, but at last, some closure is starting to happen. I went back in to the Farber today, and Boston seems to have returned to some semblance of normal. I didn't try to go back to the scene of the bombing, but I will in time. I'm sure there will be some memorial established to honor the victims. I hope so.
Some years ago, my friend, Bob, and I drove through Oklahoma City, and we spent some time visiting the Murrah Building bombing memorial there. It was extremely moving. That was a far more destructive bomb than the Marathon bombs, in that 168 people lost their lives, and the evidence of the devastation is still there. Across the street from the Murrah Building is a small memorial with a statue of Jesus with his back turned to the scene of the blast. He is depicted looking at a stone wall engraved with the names of those lost in the blast. The inscription on his statue says, "Jesus wept". I'm not a religious person, and Bob is Jewish, but both of us were overwhelmed by this simple universal depiction of grief.
We in this country lost a lot of our innocence then. But we still thought it an anomaly. Then came 9/11. No longer could we feel safe from terrorist attack. But even then, the thought that it could happen to us here and now seemed somewhat remote. No longer. Last week stripped the last veil of complacency from us. Yes, it can happen here and now. Anytime. Anywhere. The question is how do we respond to this. My take is that we just go on doing what we were doing. As they may have said in ancient Rome, "Illegitimi non carborundum", or in other words, "Don't let the bastards wear you down". Or to put it in more modern parlance, shit happens. Just go on hoping that you won't end up in the right place at the wrong time or the wrong place at the right time, right?
My main reason to go into the Farber wasn't medical. Today was the monthly meeting of the Writing Workshop that I have been attending, and it has been so informative, entertaining, enlightening, and inspirational that I didn't want to miss it. It was very interesting, with some beautiful writing submissions. However, mine wasn't one of them, because I didn't do my homework.
As it turns out, this month is also the time for my annual skeletal survey, so I took the opportunity while there to walk in and have them take about 19 X-rays of my body. I know the drill, so I'm starting to know the positions by heart. Based on my good response to therapy so far, I have no reason to expect that they won't turn out fine.
In other news, Gretchen is doing really well. She got "fired" (let's say graduated) from two of her three outpatient therapy sessions last week. Based on her rapid progress, she no longer needs Physical Therapy or Speech Therapy. Her only remaining therapy sessions are Occupational Therapy for the arm injury she sustained in her fall, but that is coming along well too. She still has ups and downs, but on the average, she is showing steady progress day by day. I can't believe how well her brain has recovered so much is such a short time. We're both very lucky.
Also, I had a colonoscopy last week. I decided to have this done because colon cancer is one of the potential secondary cancers that can be caused by the various chemotherapy medications I have taken, including Cytoxan, melphalan, and Revlimid. Despite those risks, for the first time I had no polyps, which is great! So I can check that one off the list.
All in all, it has been an eventful week.
Some years ago, my friend, Bob, and I drove through Oklahoma City, and we spent some time visiting the Murrah Building bombing memorial there. It was extremely moving. That was a far more destructive bomb than the Marathon bombs, in that 168 people lost their lives, and the evidence of the devastation is still there. Across the street from the Murrah Building is a small memorial with a statue of Jesus with his back turned to the scene of the blast. He is depicted looking at a stone wall engraved with the names of those lost in the blast. The inscription on his statue says, "Jesus wept". I'm not a religious person, and Bob is Jewish, but both of us were overwhelmed by this simple universal depiction of grief.
We in this country lost a lot of our innocence then. But we still thought it an anomaly. Then came 9/11. No longer could we feel safe from terrorist attack. But even then, the thought that it could happen to us here and now seemed somewhat remote. No longer. Last week stripped the last veil of complacency from us. Yes, it can happen here and now. Anytime. Anywhere. The question is how do we respond to this. My take is that we just go on doing what we were doing. As they may have said in ancient Rome, "Illegitimi non carborundum", or in other words, "Don't let the bastards wear you down". Or to put it in more modern parlance, shit happens. Just go on hoping that you won't end up in the right place at the wrong time or the wrong place at the right time, right?
My main reason to go into the Farber wasn't medical. Today was the monthly meeting of the Writing Workshop that I have been attending, and it has been so informative, entertaining, enlightening, and inspirational that I didn't want to miss it. It was very interesting, with some beautiful writing submissions. However, mine wasn't one of them, because I didn't do my homework.
As it turns out, this month is also the time for my annual skeletal survey, so I took the opportunity while there to walk in and have them take about 19 X-rays of my body. I know the drill, so I'm starting to know the positions by heart. Based on my good response to therapy so far, I have no reason to expect that they won't turn out fine.
In other news, Gretchen is doing really well. She got "fired" (let's say graduated) from two of her three outpatient therapy sessions last week. Based on her rapid progress, she no longer needs Physical Therapy or Speech Therapy. Her only remaining therapy sessions are Occupational Therapy for the arm injury she sustained in her fall, but that is coming along well too. She still has ups and downs, but on the average, she is showing steady progress day by day. I can't believe how well her brain has recovered so much is such a short time. We're both very lucky.
Also, I had a colonoscopy last week. I decided to have this done because colon cancer is one of the potential secondary cancers that can be caused by the various chemotherapy medications I have taken, including Cytoxan, melphalan, and Revlimid. Despite those risks, for the first time I had no polyps, which is great! So I can check that one off the list.
All in all, it has been an eventful week.
Monday, April 15, 2013
Marathon Day in Boston
Today was my monthly appointment at the Farber. Gretchen wanted to come into Boston with me, and we decided to do something different. Instead of our normal drive into town, we would take the commuter train into North Station from Newburyport, then ride the Green Line subway out to the Longwood medical area, and walk the rest of the way. It would be an adventure! We had no idea how much of an adventure it would turn out to be.
Getting there was a bit of a hassle due to the crowds swarming into the Copley Square area for the Boston Marathon, but we got to the Farber without incident. However, while I was getting my Zometa infusion, we heard the news of the Boston Marathon bombing, and we sat transfixed in front of the TV as the news unfolded. What an awful thing! One just never expects something like this to hit so close to home. It's like who would ever expect to get Multiple Myeloma?
It is in times like these that you find out how wonderful people can be. As the area around the crime scene was locked down, we heard the news that the Green Line subway was closed through Copley Square, which left us wondering how we would get home. A woman MM patient in the next cubicle was getting her infusion therapy at that time. We struck up a conversation with her and her daughter, and when they found that we might have a problem getting home, they offered to drive us all the way back to West Newbury, even though they were going in another direction. We declined, of course, but we did accept their offer to drive us to another subway station that had an unimpeded route to our destination. We were very grateful. How nice is that?
On the subway, we met an older woman from Canada, a cancer survivor, who was running in her first marathon for charity. She was stopped along the way well short of the finish because of the bombing. Her daughter, who was also competing, was far ahead of her, and when she found out what had happened, she thought her daughter might have been near the finish line just about when the bombs went off. After some moments of terror, she discovered that her daughter was OK, and now she was just trying to find her way back to the hotel where they both were staying. I hope she made it there soon, as I'm sure they needed each other then. Another woman on the subway (a nurse at Dana Farber), cheerfully helped us figure out how to get to where we wanted to go and led the way for us. After that, we manged to get back home without further incident.
Boston has a reputation for being a somewhat cold and unfriendly city. Don't believe it. Certainly not today.
With all of the tragedy of this day in Boston, there was at least some good news for me personally. My bone marrow biopsy results were back. I didn't think I was at all anxious about them, but as my nurse, Mary, handed me the pathology report, my heart was palpitating a bit. But the news was great! There are fewer than 5% plasma cells in my bone marrow, and the Flow Cytometry results showed no evidence of residual disease. So I have now gone a full year since my ASCT, and I am still in complete remission. While I am happy with this report of course, it is hard for me to me to be too ebullient, what with all the suffering of today's victims and families.
We were looking for a day with adventure. I guess we got that and then some.
Getting there was a bit of a hassle due to the crowds swarming into the Copley Square area for the Boston Marathon, but we got to the Farber without incident. However, while I was getting my Zometa infusion, we heard the news of the Boston Marathon bombing, and we sat transfixed in front of the TV as the news unfolded. What an awful thing! One just never expects something like this to hit so close to home. It's like who would ever expect to get Multiple Myeloma?
It is in times like these that you find out how wonderful people can be. As the area around the crime scene was locked down, we heard the news that the Green Line subway was closed through Copley Square, which left us wondering how we would get home. A woman MM patient in the next cubicle was getting her infusion therapy at that time. We struck up a conversation with her and her daughter, and when they found that we might have a problem getting home, they offered to drive us all the way back to West Newbury, even though they were going in another direction. We declined, of course, but we did accept their offer to drive us to another subway station that had an unimpeded route to our destination. We were very grateful. How nice is that?
On the subway, we met an older woman from Canada, a cancer survivor, who was running in her first marathon for charity. She was stopped along the way well short of the finish because of the bombing. Her daughter, who was also competing, was far ahead of her, and when she found out what had happened, she thought her daughter might have been near the finish line just about when the bombs went off. After some moments of terror, she discovered that her daughter was OK, and now she was just trying to find her way back to the hotel where they both were staying. I hope she made it there soon, as I'm sure they needed each other then. Another woman on the subway (a nurse at Dana Farber), cheerfully helped us figure out how to get to where we wanted to go and led the way for us. After that, we manged to get back home without further incident.
Boston has a reputation for being a somewhat cold and unfriendly city. Don't believe it. Certainly not today.
With all of the tragedy of this day in Boston, there was at least some good news for me personally. My bone marrow biopsy results were back. I didn't think I was at all anxious about them, but as my nurse, Mary, handed me the pathology report, my heart was palpitating a bit. But the news was great! There are fewer than 5% plasma cells in my bone marrow, and the Flow Cytometry results showed no evidence of residual disease. So I have now gone a full year since my ASCT, and I am still in complete remission. While I am happy with this report of course, it is hard for me to me to be too ebullient, what with all the suffering of today's victims and families.
We were looking for a day with adventure. I guess we got that and then some.
Saturday, April 13, 2013
Waiting for Results
I've been checking the DFCI Patient Gateway website daily for any news about my recent bone marrow biopsy. So far, nada. the Differential Review and Cell Marker Studies are still listed as "Pending". Usually, the results are available in about three weeks, but it will be four weeks on Monday, when I go back to the Farber for my monthly blood draw and Zometa infusion. I don't know what the delay is, but I'm not overly concerned about it. I'd kind of like to know, however.
I'm still feeling great, but I do sleep a lot more than I used to. It may be due to my persistent anemia, caused either by the MM itself or the daily dose of Revlimid that I have been taking. Or maybe I'm just getting old. Perish the thought! I'm still trying to go to the gym regularly, but I've been a bad boy for the last few days.
Gretchen is still on her way to recovery, although she realizes that she has a long way to go yet. It's a bit scary, wondering when or if she will fully recover all her mental faculties. She has experimented with going back to work and driving, but she doesn't feel fully capable of doing either yet. Still, I can't help but be amazed at how far she has come in less than two months since her accident. I'm pretty confident that she will continue to improve and eventually get back to normal or very near normal, but nothing is guaranteed, so we have our fingers and toes crossed.
Tomorrow, we will go out to brunch with Jeff to celebrate his 43rd birthday (can I really be that old?). Happy Birthday, Jeff! Afterwards, Jeff, Christine, Gretchen and I will attend a matinee performance of a play in Lowell called "Proof". It's supposed to be very good. There's only one slight problem. Tomorrow is my 24-hour urine collection day for my Monday appointment at the Farber. Since we will be out of the house from about 9:00 am to who knows when (we may go to dinner afterwards), I will be carrying a urine collection bottle around with me all day. That should be a lot of fun. At least I don't have to try to carry it onto an airplane. I have to say that this 24-hour urine collection thing is one of the biggest hassles of my condition. That being said, how lucky can I be to be able to say that? If that's my biggest concern, why am I even mentioning it? Good question. Forget I even brought it up.
I'm still feeling great, but I do sleep a lot more than I used to. It may be due to my persistent anemia, caused either by the MM itself or the daily dose of Revlimid that I have been taking. Or maybe I'm just getting old. Perish the thought! I'm still trying to go to the gym regularly, but I've been a bad boy for the last few days.
Gretchen is still on her way to recovery, although she realizes that she has a long way to go yet. It's a bit scary, wondering when or if she will fully recover all her mental faculties. She has experimented with going back to work and driving, but she doesn't feel fully capable of doing either yet. Still, I can't help but be amazed at how far she has come in less than two months since her accident. I'm pretty confident that she will continue to improve and eventually get back to normal or very near normal, but nothing is guaranteed, so we have our fingers and toes crossed.
Tomorrow, we will go out to brunch with Jeff to celebrate his 43rd birthday (can I really be that old?). Happy Birthday, Jeff! Afterwards, Jeff, Christine, Gretchen and I will attend a matinee performance of a play in Lowell called "Proof". It's supposed to be very good. There's only one slight problem. Tomorrow is my 24-hour urine collection day for my Monday appointment at the Farber. Since we will be out of the house from about 9:00 am to who knows when (we may go to dinner afterwards), I will be carrying a urine collection bottle around with me all day. That should be a lot of fun. At least I don't have to try to carry it onto an airplane. I have to say that this 24-hour urine collection thing is one of the biggest hassles of my condition. That being said, how lucky can I be to be able to say that? If that's my biggest concern, why am I even mentioning it? Good question. Forget I even brought it up.
Wednesday, April 3, 2013
Odds and Ends
I've been checking online to see if any results are available from my latest bone marrow biopsy, but nothing will be reported until next week. Of course I'm hopeful that the multiparameter flow cytometry (MFC) results will confirm that I have no minimum residual disease (MRD), which would mean that I am still in complete remission. We'll see. I'm keeping my fingers crossed.
Gretchen continues to improve every day. Her rehab has been very instrumental in helping her to recover both physically and mentally. I can't say enough about the wonderful staff at the Northeast Rehabilitation Hospital (NRH) in Salem, NH. After her discharge, we chose to continue going back there for her outpatient therapy, even though there were other facilities closer to us that would have been more convenient. However, NRH specializes in neurological injuries (brain trauma, concussion, stroke, etc.), and I can't imagine a better place for Gretchen to continue her recovery. Besides, her inpatient neurologist, Dr. Whitlock, chose to keep her on as his patient after her discharge (which is unusual), and he is wonderful. As it turns out, he is also the Medical Director at NRH. As with her neurosurgeon, Dr. Alterman, Gretchen has been extremely fortunate to have encountered the top medical professionals along the way to help her in her recent travails.
I don't mind driving Gretchen to these appointments (one hour round trip to NRH). After all, she has been a rock for me during my MM travails over the past two years. I guess what goes around, comes around. Tomorrow we go back into Boston for her followup ENT appointment. Next week, her friend, Karen, plans to pick her up and and take her for a facial appointment, because she thinks that by then, I'll be "tired of carting her sorry ass around". Not so! Nevertheless, Gretchen feels a bit caged in and is anxious to be able to begin driving herself around again.
I took a break from gong to the gym during this recent time of crisis, but I have started going back again. Gretchen isn't ready to do that yet, so I am doing this on my own. I have almost gotten back to the weight levels I had reached earlier, so I hope I can keep this up and make it a regular routine. It's really a good feeling to walk out of there tired and sweaty, knowing that I have done something good for myself. It makes me feel young again.
On my last visit to DFCI, there was an article in the internal newsletter announcing that Dr. Richardson has been appointed to a full professor and endowment chair at Harvard Medical School. The article went on to list his prodigious accomplishments, publications, and awards (too long to repeat here). Good for him! And again, lucky for me that he's my doc.
Gretchen continues to improve every day. Her rehab has been very instrumental in helping her to recover both physically and mentally. I can't say enough about the wonderful staff at the Northeast Rehabilitation Hospital (NRH) in Salem, NH. After her discharge, we chose to continue going back there for her outpatient therapy, even though there were other facilities closer to us that would have been more convenient. However, NRH specializes in neurological injuries (brain trauma, concussion, stroke, etc.), and I can't imagine a better place for Gretchen to continue her recovery. Besides, her inpatient neurologist, Dr. Whitlock, chose to keep her on as his patient after her discharge (which is unusual), and he is wonderful. As it turns out, he is also the Medical Director at NRH. As with her neurosurgeon, Dr. Alterman, Gretchen has been extremely fortunate to have encountered the top medical professionals along the way to help her in her recent travails.
I don't mind driving Gretchen to these appointments (one hour round trip to NRH). After all, she has been a rock for me during my MM travails over the past two years. I guess what goes around, comes around. Tomorrow we go back into Boston for her followup ENT appointment. Next week, her friend, Karen, plans to pick her up and and take her for a facial appointment, because she thinks that by then, I'll be "tired of carting her sorry ass around". Not so! Nevertheless, Gretchen feels a bit caged in and is anxious to be able to begin driving herself around again.
I took a break from gong to the gym during this recent time of crisis, but I have started going back again. Gretchen isn't ready to do that yet, so I am doing this on my own. I have almost gotten back to the weight levels I had reached earlier, so I hope I can keep this up and make it a regular routine. It's really a good feeling to walk out of there tired and sweaty, knowing that I have done something good for myself. It makes me feel young again.
On my last visit to DFCI, there was an article in the internal newsletter announcing that Dr. Richardson has been appointed to a full professor and endowment chair at Harvard Medical School. The article went on to list his prodigious accomplishments, publications, and awards (too long to repeat here). Good for him! And again, lucky for me that he's my doc.
Monday, March 25, 2013
Bone Marrow Biopsy Day
The other day, we received a letter from the company that runs the helicopter medical transport service that air-lifted Gretchen from Newburyport to Boston for her surgery. They sent the bill to us because they needed an assignment of benefits form before they could bill Blue Cross. It was quite eye-popping. The balance due is $33,962.07! Naturally, I had Gretchen sign the form immediately and got it into the mail ASAP. I don't know how much of this the insurance will pay, but I can't wait to see how much we will owe afterwards. I'm not complaining, mind you. Without this service, she might not be here right now, so I couldn't put a price on that. However, if any of you are looking for a lucrative business to get into, this could be it!
Gretchen continues to recover slowly, as her headaches, dizziness, and shoulder pain have all improved considerably. Last week, she had a transformation in attitude. Up until then, she was just feeling very grateful for everything. But as we walked into the rehab unit last Tuesday, she decided that she was done being grateful...now she was pissed. The nurses all understood completely. Why wouldn't she be angry? After all, being brain damaged kind of sucks. I think this is just a healthy evolution in her recovery, which will have its ups and downs along the way. She's doing better all the time, and I am confident of her eventual full recovery. As for me, I am still feeling very grateful.
After all of Gretchen's recent travails, today it was my turn. A year after my ASCT, it was time for another bone marrow biopsy to check my progress. This is not the most pleasant procedure, and I still have vivid memories of my first bone biopsy performed by my previous hematologist at Lahey Clinic. That really sucked. I don't think doctors should be allowed to perform this procedure, since they are always rushed for time and don't do very many of them. They should leave this to the PAs, who do them all day long and are experts in the procedure.
Before the procedure, the tech asked my how my day was, and I said it was great until then, but I wasn't too sure about the rest of it. He said that if I didn't feel that way, they would probably have to keep me for observation. ;-) The biggest concern I had was that the needle might impinge on the sciatic nerve, which could be very painful and have aftereffects for quite a while. This happened to fellow blogger, Elizabeth (who has smoldering myeloma), when she had her bone marrow biopsy done at DFCI last July. Here is a link to her description of that: Elizabeth's bone marrow biopsy.
Anyway, I was thrilled to learn that Zack was to be my PA for this procedure today. He did my last biopsy in August, which was wasn't bad at all. Today was no different...better actually. He talked me through every stage: collecting the marrow aspirate and taking a piece of the bone. It really helps to know what is coming and be prepared. There was actually very little pain, so it was really a piece of cake! I was out of there and feeling fine in no time. I will definitely ask for him again when I have my next bone marrow biopsy.
Afterwards, Gretchen and I met our friend, Denise, for lunch in Boston at a French restaurant. One of the menu items was roasted bone marrow. Are you kidding me? No thanks! Anyway, we had a nice lunch and a delightful time.
Gretchen continues to recover slowly, as her headaches, dizziness, and shoulder pain have all improved considerably. Last week, she had a transformation in attitude. Up until then, she was just feeling very grateful for everything. But as we walked into the rehab unit last Tuesday, she decided that she was done being grateful...now she was pissed. The nurses all understood completely. Why wouldn't she be angry? After all, being brain damaged kind of sucks. I think this is just a healthy evolution in her recovery, which will have its ups and downs along the way. She's doing better all the time, and I am confident of her eventual full recovery. As for me, I am still feeling very grateful.
After all of Gretchen's recent travails, today it was my turn. A year after my ASCT, it was time for another bone marrow biopsy to check my progress. This is not the most pleasant procedure, and I still have vivid memories of my first bone biopsy performed by my previous hematologist at Lahey Clinic. That really sucked. I don't think doctors should be allowed to perform this procedure, since they are always rushed for time and don't do very many of them. They should leave this to the PAs, who do them all day long and are experts in the procedure.
Before the procedure, the tech asked my how my day was, and I said it was great until then, but I wasn't too sure about the rest of it. He said that if I didn't feel that way, they would probably have to keep me for observation. ;-) The biggest concern I had was that the needle might impinge on the sciatic nerve, which could be very painful and have aftereffects for quite a while. This happened to fellow blogger, Elizabeth (who has smoldering myeloma), when she had her bone marrow biopsy done at DFCI last July. Here is a link to her description of that: Elizabeth's bone marrow biopsy.
Anyway, I was thrilled to learn that Zack was to be my PA for this procedure today. He did my last biopsy in August, which was wasn't bad at all. Today was no different...better actually. He talked me through every stage: collecting the marrow aspirate and taking a piece of the bone. It really helps to know what is coming and be prepared. There was actually very little pain, so it was really a piece of cake! I was out of there and feeling fine in no time. I will definitely ask for him again when I have my next bone marrow biopsy.
Afterwards, Gretchen and I met our friend, Denise, for lunch in Boston at a French restaurant. One of the menu items was roasted bone marrow. Are you kidding me? No thanks! Anyway, we had a nice lunch and a delightful time.
Tuesday, March 19, 2013
Milestones
At 7:02 am Eastern Daylight Time tomorrow, March 20, 2013, the sun will cross the celestial equator, an event known as the Vernal Equinox, signalling the official start of spring. Looking outside tonight, after the latest in a succession of recent snowstorms, it's almost hard to believe, but it's true. This marks the advent of rebirth, renewal and growth, a time to emerge from the darkness of winter and enjoy the freshness of spring. Here at home, we too are emerging from the darkness of Gretchen's accident into her time of rebirth, renewal and hope, as she valiantly struggles to recover her full physical and mental capabilities. The recent news has been good. Yesterday, her neurosurgeon, Dr. Altman, said her latest CT scan looks great, she's doing fine, and she doesn't have to come back to see him any more. Gretchen told him she felt "Very, very, very, lucky". He looked back at her and said, "You are very, very, very lucky". I might add that I am also very, very, very lucky.
I also had my monthly visit to the Farber yesterday. My neutrophil counts are still low (1,113), but high enough to keep taking my Revlimid maintenance therapy for the next cycle. My other numbers were pretty stable, so I guess I'm still doing fine. I won't get the results of my blood and urine electrophoresis results for a few more days. In addition to my Zometa infusion, I also got more immunization shots...6 of them! Ouch! They included DTP, Hib, Hepatitis B, Meningococcal, Pneunonia, and Polio vaccines. I felt like a pin cushion.
Pat Killingsworth recently posted on his blog a video with Dr. Richardson. It is meant to be a continuing education course for medical professionals. It is a great discussion between Dr. Richardson and Dr. Jesus San Miguel from Spain on "Practical Strategies for Maintenance Therapy in Patients with Multiple Myeloma". Here is the link:
http://www.medscape.org/viewarticle/779699.
Some people have had trouble opening it, but it worked fine for me. It is a terrific discussion of the advantages of using maintenance drugs (Revlimid or Velcade) to promote long-term remission of MM. I felt like they were talking about me, as I am almost a "poster geezer" for the approach they discuss, including the advantages of a consolidation phase. I mentioned this video to my nurses, Mary and Muriel, yesterday, and they both plan to watch it and get the CEU credits for it! Good! I want them to be as up to date as I am on MM treatment options (just kidding!).
Tomorrow is also special to me for other reasons. In 1975, my father died on February 13 at the age of 70 years, 108 days. He was always very special to me, and despite his many faults, I admired him greatly. I have missed him a lot over these years. He abused his body by smoking his entire life, and his final years with emphazema were not pleasant. I have often wondered if I might live beyond his years. My recent diagnosis of MM had given me some doubts about that. No longer. Tomorrow, I will have lived 70 years, 108 days. Unless I croak before this post is published, I will have reached that milestone.
However, as interesting as that may be, tomorrow marks an even more important milestone in my life. One year ago, I lay in Brigham and Women's Hospital awaiting my Autologous Stem Cell Transplant, nervous, a little scared, and uncertain about my future. Tomorrow, on March 20, my new bone marrow will be one year old. It's my first birthday! As with the Queen of England, I now have two birthdays, December 2 and March 20. I am a very lucky guy to have had a remarkable recovery and still be in good health and in remission on my first birthday. I am very grateful. Happy Birthday to me!!
I also had my monthly visit to the Farber yesterday. My neutrophil counts are still low (1,113), but high enough to keep taking my Revlimid maintenance therapy for the next cycle. My other numbers were pretty stable, so I guess I'm still doing fine. I won't get the results of my blood and urine electrophoresis results for a few more days. In addition to my Zometa infusion, I also got more immunization shots...6 of them! Ouch! They included DTP, Hib, Hepatitis B, Meningococcal, Pneunonia, and Polio vaccines. I felt like a pin cushion.
Pat Killingsworth recently posted on his blog a video with Dr. Richardson. It is meant to be a continuing education course for medical professionals. It is a great discussion between Dr. Richardson and Dr. Jesus San Miguel from Spain on "Practical Strategies for Maintenance Therapy in Patients with Multiple Myeloma". Here is the link:
http://www.medscape.org/viewarticle/779699.
Some people have had trouble opening it, but it worked fine for me. It is a terrific discussion of the advantages of using maintenance drugs (Revlimid or Velcade) to promote long-term remission of MM. I felt like they were talking about me, as I am almost a "poster geezer" for the approach they discuss, including the advantages of a consolidation phase. I mentioned this video to my nurses, Mary and Muriel, yesterday, and they both plan to watch it and get the CEU credits for it! Good! I want them to be as up to date as I am on MM treatment options (just kidding!).
Tomorrow is also special to me for other reasons. In 1975, my father died on February 13 at the age of 70 years, 108 days. He was always very special to me, and despite his many faults, I admired him greatly. I have missed him a lot over these years. He abused his body by smoking his entire life, and his final years with emphazema were not pleasant. I have often wondered if I might live beyond his years. My recent diagnosis of MM had given me some doubts about that. No longer. Tomorrow, I will have lived 70 years, 108 days. Unless I croak before this post is published, I will have reached that milestone.
However, as interesting as that may be, tomorrow marks an even more important milestone in my life. One year ago, I lay in Brigham and Women's Hospital awaiting my Autologous Stem Cell Transplant, nervous, a little scared, and uncertain about my future. Tomorrow, on March 20, my new bone marrow will be one year old. It's my first birthday! As with the Queen of England, I now have two birthdays, December 2 and March 20. I am a very lucky guy to have had a remarkable recovery and still be in good health and in remission on my first birthday. I am very grateful. Happy Birthday to me!!
Thursday, March 14, 2013
Medical Progress
I am pleased to report that Gretchen is doing very well. She came home from the rehab last Friday after 9 days, a very short stay considering the massive brain injury she suffered. She still has headache and dizziness, along with ancillary problems with ear and shoulder pain, but all things considered, she has made a miraculous recovery. Her balance is quite good and she is walking fine and climbing stairs (the basement is off limits!)
Yesterday we went back to the Northeast Rehab Hospital to begin her outpatient therapy. The OT, PT, and speech therapists were all impressed with her progress. In fact her new PT, Naomi, told her that it was a real privilege to work with someone who was doing so well considering the severity of her trauma.
Just how bad was it? While there, I got a copy of her medical record summary from Beth Israel. Although I thought I knew how serious her injury was, I was taken aback to learn that it was even worse than I thought. Her initial CT scan showed a "large right side hyperacute frontotemporal epidural hematoma with intraparenchymal involvement and midline shifting". From my Google research, "intraparenchymal" means that the bleeding was not only between the outer membrane of her brain and her skull (epidural) but also involved hemorrhaging in the brain tissue itself. Hyperacute? I didn't need to look that up.
After her extraordinarily successful surgery (thank you to the moon, Dr. Alterman!), her follow-up CT scan showed a residual extra-axial hemorrhage, as well as a parafalcine subdural hematoma. It also noted "layering along the left tentorium, left temporal lobe intraparenchymal hemorrhage, and a right-sided calvarial fracture extending through the parietal and petrous temporal bone to terminate along the canal for the tensor tympany." The last of these is the presumed source for her right ear pain and hearing problems. That fracture is probably why during her craniotomy her skull came off in two pieces.
I don't know what a lot of these terms mean, but from what I have looked up, Gretchen had not one but three hemorrhages occurring in her brain: on the right, middle and left sides! Holy crap! I'm not a religious person, nor am I particularly spiritual, but the fact that Gretchen is alive today, not to mention functioning well both physically and mentally and on her way to recovery, is nothing short of miraculous. It obviously was not her time to go. Her mission on this planet has not yet been accomplished. Paraphrasing Robert Frost, she has miles to go before she sleeps.
With my MM to deal with and now Gretchen's accident, one of our friends recently commented that if it weren't for bad luck, we would have no luck at all. I guess one could look at it that way, but to me, the glass is half full. I think we are both very lucky people: I am in remission from my MM and my wife is on the rebound from a near-fatal accident. How lucky can we both be? We have so much to look forward to.
Yesterday we went back to the Northeast Rehab Hospital to begin her outpatient therapy. The OT, PT, and speech therapists were all impressed with her progress. In fact her new PT, Naomi, told her that it was a real privilege to work with someone who was doing so well considering the severity of her trauma.
Just how bad was it? While there, I got a copy of her medical record summary from Beth Israel. Although I thought I knew how serious her injury was, I was taken aback to learn that it was even worse than I thought. Her initial CT scan showed a "large right side hyperacute frontotemporal epidural hematoma with intraparenchymal involvement and midline shifting". From my Google research, "intraparenchymal" means that the bleeding was not only between the outer membrane of her brain and her skull (epidural) but also involved hemorrhaging in the brain tissue itself. Hyperacute? I didn't need to look that up.
After her extraordinarily successful surgery (thank you to the moon, Dr. Alterman!), her follow-up CT scan showed a residual extra-axial hemorrhage, as well as a parafalcine subdural hematoma. It also noted "layering along the left tentorium, left temporal lobe intraparenchymal hemorrhage, and a right-sided calvarial fracture extending through the parietal and petrous temporal bone to terminate along the canal for the tensor tympany." The last of these is the presumed source for her right ear pain and hearing problems. That fracture is probably why during her craniotomy her skull came off in two pieces.
I don't know what a lot of these terms mean, but from what I have looked up, Gretchen had not one but three hemorrhages occurring in her brain: on the right, middle and left sides! Holy crap! I'm not a religious person, nor am I particularly spiritual, but the fact that Gretchen is alive today, not to mention functioning well both physically and mentally and on her way to recovery, is nothing short of miraculous. It obviously was not her time to go. Her mission on this planet has not yet been accomplished. Paraphrasing Robert Frost, she has miles to go before she sleeps.
With my MM to deal with and now Gretchen's accident, one of our friends recently commented that if it weren't for bad luck, we would have no luck at all. I guess one could look at it that way, but to me, the glass is half full. I think we are both very lucky people: I am in remission from my MM and my wife is on the rebound from a near-fatal accident. How lucky can we both be? We have so much to look forward to.
Wednesday, March 6, 2013
Gretchen Update
After my last two posts, I have received an unprecedented number of comments. Many of you also responded by email, phone, or text messages. I want to apologize to all of you who communicated to me by not having responded personally to each of you. I have been somewhat distracted over the last week or so, so I want to take this opportunity to thank you one and all for your heartfelt concern and best wishes for Gretchen (and me too) during this time of crisis.
The outpouring of empathy, caring, and support for Gretchen after this awful accident has been incredible. This does not surprise me in the least, because she is so well-loved. As anyone who knows her will attest, she is one of the most loving, caring, and giving human beings on this planet. All of us who know her would have been greatly diminished (myself especially) had she not survived this fall. But thankfully she did. I can't tell you how lucky I am to still have her!
She has been working hard and is responding well to her rehab therapy. She is now walking without assistance and has been cleared to come back home on Friday. Yay! Yesterday we met Jeff and Christine at an Italian restaurant in Salem, NH to celebrate her 60th birthday. We all had a good time. I couldn't help but think how close a call it was that that celebration almost didn't take place.
Holly and Ryan are coming in from San Francisco again this weekend, so we plan to have a quiet dinner at home Friday along with Jeff and Christine. A fire in the fireplace should warm the place up to make it a comfortable homecoming for Gretchen.
Over the past year and a half as I have been undergoing infusion therapy for my MM, I often sat in a window cubicle overlooking the Beth Israel Hospital across the street on Brookline Ave.. I would idly wonder what went on in that building. Little did I know or could I possible imagine that it would be the place where one of the best neurosurgeons in Boston would one day save my wife's life!
Our paths are about to geographically converge in a confluence of events. On March 18, she has an appointment at BI at 8:30 for a CT scan and to see her neurosurgeon, Dr. Alterman at 9:00, while I have a blood draw scheduled at DFCI across the street at 8:45, as well as my monthly meeting with the nurses and my Zometa infusion. I think we'll be able to juggle things to manage this twofer.
The outpouring of empathy, caring, and support for Gretchen after this awful accident has been incredible. This does not surprise me in the least, because she is so well-loved. As anyone who knows her will attest, she is one of the most loving, caring, and giving human beings on this planet. All of us who know her would have been greatly diminished (myself especially) had she not survived this fall. But thankfully she did. I can't tell you how lucky I am to still have her!
She has been working hard and is responding well to her rehab therapy. She is now walking without assistance and has been cleared to come back home on Friday. Yay! Yesterday we met Jeff and Christine at an Italian restaurant in Salem, NH to celebrate her 60th birthday. We all had a good time. I couldn't help but think how close a call it was that that celebration almost didn't take place.
Holly and Ryan are coming in from San Francisco again this weekend, so we plan to have a quiet dinner at home Friday along with Jeff and Christine. A fire in the fireplace should warm the place up to make it a comfortable homecoming for Gretchen.
Over the past year and a half as I have been undergoing infusion therapy for my MM, I often sat in a window cubicle overlooking the Beth Israel Hospital across the street on Brookline Ave.. I would idly wonder what went on in that building. Little did I know or could I possible imagine that it would be the place where one of the best neurosurgeons in Boston would one day save my wife's life!
Our paths are about to geographically converge in a confluence of events. On March 18, she has an appointment at BI at 8:30 for a CT scan and to see her neurosurgeon, Dr. Alterman at 9:00, while I have a blood draw scheduled at DFCI across the street at 8:45, as well as my monthly meeting with the nurses and my Zometa infusion. I think we'll be able to juggle things to manage this twofer.
Sunday, March 3, 2013
The New New Normal
A couple of weeks ago, I wrote about our "new normal" as we have learned to come to terms with my MM. Now the caregiver has become the patient and the patient the caregiver. So we will have to start adjusting to our "new new normal". (We engineers might refer to it as a new-squared normal.) Life has a way of throwing an occasional curve ball, but it is what it is.
Before all this happened, I was about to publish a regular post about what I was up to. Of course that became moot a week ago Friday. Now that this crisis has reached a point of relative stability, I can resurrect some of what I was about to blog about then.
After my last DFCI visit, I went online to check out the pathology results of my latest urine test. To my relief, the comforting words, "No monoclonal protein detected" and "No apparent M-spike" appeared. I have now gone 11 months since my stem cell transplant without any recurrence. Of course, this is a month-to-month vigil, but I celebrate each MM-free month as a gift.
I recently had a delightful lunch in Boston with fellow MM patient, Mike, from New York. His wife was up here for a conference, so he has some spare time. It was a bright, crisp winter day, and we enjoyed the view of Boston Harbor from Anthony's Pier 4 restaurant. It was such a pleasure to catch up and share news, thoughts and feelings. It is special to be able to share experiences with fellow MM patients. Unless one has actually heard the words that you have been diagnosed with an incurable cancer and stared into that abyss, it would be hard to fully relate to the feelings and the changes it brings to one's life. It gives rise to an introspection that too often beforehand, we were too busy or preoccupied to focus on. Both of us simply enjoyed the moment: the company, the conversation, the ambiance, the view, all of it.
You may remember that I previously reported that Michael was one of the rare patients who did not respond to MLN9708. He then went on a different protocol, which also didn't work. Fortunately, the new proteasome inhibitor, Kyprolis, was just approved by the FDA last summer for relapsed/refractory MM (rrMM). He just finished his first cycle with Kyprolis, and his numbers improved greatly. Yay! Here's hoping that he has finally found the right combination.
There continues to be good progress in the search for new drugs to fight MM. Just 2 weeks ago, the new anti-MM IMiD, pomalidomide (trade name Pomalyst) was also approved by the FDA for rrMM. Pomalyst could be a substitute for Revlimid for patients who become refractory. Since I take Rev daily, it comforting to know that a powerful alternative is on the shelf should I need it someday.
Jeff and I had been planning to spend last week golfing with my brother Terry and bunch of other guys in Ocean Isle Beach, NC. Of course, under the circumstances we both cancelled our trips. Who wants to keep whacking a ball with a funny-shaped stick and go chasing all over the place after it anyway? Stupid game! Glad we missed it. Sigh.
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