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.
Monday, March 25, 2013
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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