Today was the monthly meeting of the Writing Workshop at the Farber. I am always humbled by the experience of being with these amazing people. It's a place of sharing, and some of the stories of their ordeals with cancer and the impact on their families are heart-rending. Out of their pain and suffering come some literary gems. Given five minutes to write on a topic, it astounds me what truly gifted contributions most of them make. I was a laggard today, suffering writer's block (yeah, like I'm really a writer). In my defense, however, I had done my homework from last month's prompt, so I did have something to contribute. I always leave these sessions feeling enriched. Today was no exception. Unfortunately, I will have to miss next month's workshop, as we will be on vacation in Ireland. I could look into rescheduling...yeah right!
Now to change gears, I got an email from Muriel this afternoon containing the pathology report from my latest bone marrow biopsy (BMB). She wrote, "The report was reviewed by Dr. Richardson and demonstrates ongoing complete response". Yay! In the report, the information I was looking for was the flow cytometric analysis, the most sensitive test available to determine the presence of MM cells. The comforting words from last year's report were still there: "Diagnostic features of involvement by a plasma cell neoplasm are not seen." I was quite relieved. When I got home and told Gretchen of the results, she burst into tears. I forget sometimes how much all of this weighs on her. As I mentioned above about the stories shared in our Writing Workshop, having cancer has a profound effect on your loved ones. Sometimes it can be even harder for them than for you.
In order to get an idea of whether things have changed much, I looked at the comparison between this BMB pathology report and the one from a year ago. The first thing I noticed was the amount of plasma cells in my marrow. When I was first diagnosed in 2011, plasma cells were 60-70% of my bone marrow. Yikes! That was not good. In last year's BMB report, the reading was 5%. This year, it is down to 3%. I take that as a good indication that my maintenance therapy with Revlimid is working.
Now I'm not real good at deciphering all the medical gobbledegook in these pathology reports. I figure as a rule of thumb, if a result has a real complicated, hard-to-pronounce description, then the less of it I have, the better. Doesn't that make sense? For example, last year's report said,
"The aspirate smear findings are of a cellular spicular smear showing maturing trilineage hematopoiesis with relative erythroid hyperplasia, exhibiting megaloblastic change and rare dysplastic forms and scattered plasma cells, including occasional atypical forms."
Now that's a mouthful. I have no clue what that means, but this year's report says:
"The aspirate smear findings are of a cellular, spicular smear showing maturing trilineage
hematopoiesis with plasma cells, including nucleolated forms.
Now see? There are a lot fewer big words in there this year, so I take that as a good sign. Here's another example. Last year's report said,
"Flow cytometric analysis does not show clonal excess cytoplasmic staining for either immunoglobulin kappa or lambda light chain within the CD38-positive/CD138-positive/CD56-negative plasma cell population."
Now that doesn't sound too bad, but there are still a lot of big words. The new report simply says,
"Flow cytometric analysis does not reveal a significant population of plasma cells (positive for CD38 and CD138). There are too few plasma cells to evaluate for involvement by a plasma cell disorder."
I actually understand what this one says. They couldn't find enough cells to describe with big words, so that's got to be better, right?
It's all good.
Monday, March 24, 2014
Thursday, March 20, 2014
Happy Birthday to Me!
Today, March 20, is the first day of spring, although one would never know it by the piles of snow still on the ground. This day signifies the end of a tough winter and a time of rebirth and hope. And so it was for me on March 20, 2012. That day signified my time of rebirth and hope as I received my autologous stem cell transplant. Today marks the second birthday of my new immune system. So far, it is working well. Thankfully, I am still in remission and doing great. So Happy Birthday to me!
Today is also the day that my bone marrow biopsy results are supposed to be available. I checked the Patient Gateway website, and for the biopsy results, it says, "See Medical Records". I put a call in to Muriel to see if she could tell me the results over the phone, but she hasn't called back yet. I may have to wait until next week. I will be going to the Farber on Monday for the monthly Writing Workshop meeting, so I can probably pick up the lab reports then. What I am most anxious about are the Flow Cytometry results to see if there is still no evidence of residual disease.
I was recently contacted by Melanie Graham, an editor for the Dana Farber weekly blog, Insight. They are beginning a series on “Coping with Cancer Through Creative Expression”, and she invited me to be one of the patients featured in their initial launch issue, which was published yesterday. Here is a link:
http://blog.dana-farber.org/insight/
Click "Read more" on the first article to see the full blog post. Melanie also invited me to contribute blog posts to future issues, which would be an interesting and fun challenge. I have to thank Amy Boesky, our writing workshop leader, for recommending me to Melanie.
Meanwhile, the Mohs surgery for the squamous cell carcinoma on my cheek is healing nicely, as you can see from this selfie. I took the bandages off yesterday. Since my "lunch time facelift", this is now supposed to be my good side. This scar has a long way to go before I could consider this my good side.
Next up will be surgery in early April to remove the squamous cell carcinoma on my right forearm. I am now paying the price for all those severe sunburns I subjected myself to in my callow youth.
I can't wait.
Today is also the day that my bone marrow biopsy results are supposed to be available. I checked the Patient Gateway website, and for the biopsy results, it says, "See Medical Records". I put a call in to Muriel to see if she could tell me the results over the phone, but she hasn't called back yet. I may have to wait until next week. I will be going to the Farber on Monday for the monthly Writing Workshop meeting, so I can probably pick up the lab reports then. What I am most anxious about are the Flow Cytometry results to see if there is still no evidence of residual disease.
I was recently contacted by Melanie Graham, an editor for the Dana Farber weekly blog, Insight. They are beginning a series on “Coping with Cancer Through Creative Expression”, and she invited me to be one of the patients featured in their initial launch issue, which was published yesterday. Here is a link:
http://blog.dana-farber.org/insight/
Click "Read more" on the first article to see the full blog post. Melanie also invited me to contribute blog posts to future issues, which would be an interesting and fun challenge. I have to thank Amy Boesky, our writing workshop leader, for recommending me to Melanie.
Next up will be surgery in early April to remove the squamous cell carcinoma on my right forearm. I am now paying the price for all those severe sunburns I subjected myself to in my callow youth.
I can't wait.
Thursday, March 13, 2014
Mohs Surgery
Yesterday, I went to the Lahey Clinic to have Mohs surgery on the squamous cell carcinoma on my right cheek. Mohs surgery (named after the surgeon who pioneered it) involves taking a precise section of the tumor with small margins to preserve healthy tissue. This section is then examined microscopically while the patient waits to see if any of the tumor remains. If so, the area that was missed is further resected, and this process is repeated until the removal is complete. In my case, it took two cycles to get it all. I was there about 5 and 1/2 hours from start to finish.
I was a little concerned at first about the diagnostic letter I had received from my dermatologist, Dr. Reohr, suggesting this was a "possibly invasive" carcinoma. Did that mean that it could possibly metastasize? I was also a little freaked out by an article this past Sunday in the Boston Globe Magazine about a woman who also had a squamous cell carcinoma on her cheek that had metastasized. After several years of treatment and remission, it has finally spread to her liver and she is now terminal. It's a heart-wrenching story. Gretchen asked me the day before I went in if I was nervous. I told her no, since I didn't want to mention this poor woman's story to unnecessarily upset her.
I casually brought this subject up to the surgeon, Dr. Mollie MacCormack, and she said this was not an issue because mine was an in situ tumor. In situ means it is confined to the upper skin layers and has not penetrated into the blood stream, so it has no chance of metastasizing. A number of years ago, I had a Stage 0 melanoma in situ, which was also removed without any concern about metastasis, so I knew the significance of the term. The letter I got from Dr. Reohr didn't mention that this was in situ, which would have put my mind at ease. In any case, the bottom line is that Dr. MacCormack got it all and there is no further risk.
Before closing up my wound, the scalpel blade fell on the floor. Mollie said there is no "5 second rule" in surgery, so she got another one. Thanks, Mollie, good choice. My incision is near my right ear, so she had to stretch some skin to close the wound. The attending nurse said I had just gotten the equivalent of a "lunch-time facelift". That would be great if it wasn't just on one side. At least I now know which profile to use in photos, assuming I'm not horribly scarred for life on that side.
Tomorrow we are driving down to New Jersey to visit Brian, Pam, and Logan to celebrate Logan's 4th birthday party on Saturday. Wow, he growing up so quickly! Jeff will also be joining us. We plan to have dinner tomorrow night at the famous Peter Luger's steak house in Brooklyn. That place is kind of special to us, because that is where we celebrated Brian's bachelor party. It should be a fun weekend.
I was a little concerned at first about the diagnostic letter I had received from my dermatologist, Dr. Reohr, suggesting this was a "possibly invasive" carcinoma. Did that mean that it could possibly metastasize? I was also a little freaked out by an article this past Sunday in the Boston Globe Magazine about a woman who also had a squamous cell carcinoma on her cheek that had metastasized. After several years of treatment and remission, it has finally spread to her liver and she is now terminal. It's a heart-wrenching story. Gretchen asked me the day before I went in if I was nervous. I told her no, since I didn't want to mention this poor woman's story to unnecessarily upset her.
I casually brought this subject up to the surgeon, Dr. Mollie MacCormack, and she said this was not an issue because mine was an in situ tumor. In situ means it is confined to the upper skin layers and has not penetrated into the blood stream, so it has no chance of metastasizing. A number of years ago, I had a Stage 0 melanoma in situ, which was also removed without any concern about metastasis, so I knew the significance of the term. The letter I got from Dr. Reohr didn't mention that this was in situ, which would have put my mind at ease. In any case, the bottom line is that Dr. MacCormack got it all and there is no further risk.
Before closing up my wound, the scalpel blade fell on the floor. Mollie said there is no "5 second rule" in surgery, so she got another one. Thanks, Mollie, good choice. My incision is near my right ear, so she had to stretch some skin to close the wound. The attending nurse said I had just gotten the equivalent of a "lunch-time facelift". That would be great if it wasn't just on one side. At least I now know which profile to use in photos, assuming I'm not horribly scarred for life on that side.
Tomorrow we are driving down to New Jersey to visit Brian, Pam, and Logan to celebrate Logan's 4th birthday party on Saturday. Wow, he growing up so quickly! Jeff will also be joining us. We plan to have dinner tomorrow night at the famous Peter Luger's steak house in Brooklyn. That place is kind of special to us, because that is where we celebrated Brian's bachelor party. It should be a fun weekend.
Monday, March 10, 2014
Start of Cycle 20
Today was my monthly Farber visit. I got up early to hit the road for my 9:15 am appointment. I left about 7:30 and fought the rush hour traffic for over an hour and a half, getting there just a few minutes early. I then found out that I had the wrong appointment time--I wasn't due until 10:45! I don't know how that mix up occurred, but I was stuck with an extra hour and a half wait. It was not an auspicious start for the day. I was planning to have lunch with a friend, Denise, after my appointment, so I had to cancel that.
Then, while waiting for my blood draw and IV insertion for my Zometa infusion, their computer system went down, so that pushed everything back another 20 minutes or so. That's OK though. I'm trying to learn to just relax and go with the flow when this stuff happens. Well, maybe not completely. My blood pressure was a little high when I had my vitals taken, so I guess I was still a little annoyed.
I have been taking iron supplements for the last 2 months, so I was supposed to have my iron levels checked today, but that wasn't on their list. Things just weren't going smoothly today.
The good news is that when I met with Mary and Muriel, my pathology reports from last month still show no M-spike or monoclonal protein. That's great! This begins Cycle 20 of my maintenance therapy, and so far, so good. That added some perspective to my day. How trivial are these minor inconveniences I've been grumbling about compared to the news that I am still in remission! I mean really, this is a good day.
Mary put in an order to have my iron profile tested today while getting my Zometa infusion. After I got home, I checked for the results on the Dana Farber Patient Gateway website. I was disappointed to learn that after 2 months of iron supplements, my iron level is still quite low. The result was 34 ug/dL, vs. a normal range of 49-181. That's up from my January level of 24, but not by much. My ferritin only increased from 10 to 11 (normal range 20-400). Also, my TIBC only dropped from 507 to 492, with the normal range being 250-450. I'm a little concerned by this. This persistent iron deficiency, along with my other chronic anemia situation (low HCT & Hgb), has me puzzled. I'm going to continue taking iron supplements, but I'm not sure what good they are doing. I haven't had an occult blood test yet, so I'm thinking of checking in with my PCP to make sure I don't have any internal bleeding.
I still don't have any results yet from my bone marrow biopsy from last week. Those results might be available later this week. That will be the real test of the depth of my remission. I'm still a little sore from the procedure, so I will make it a definite point to request my favorite PA to do the BMB next time.
On my other cancers of interest, I have a mohs surgery scheduled for Wednesday on the "possible invasive squamous cell carcinoma" on my right cheek. I also have an excision surgery scheduled for April 2 for the "well-differentiated squamous cell carcinoma" on my right arm. Never a dull moment!
Then, while waiting for my blood draw and IV insertion for my Zometa infusion, their computer system went down, so that pushed everything back another 20 minutes or so. That's OK though. I'm trying to learn to just relax and go with the flow when this stuff happens. Well, maybe not completely. My blood pressure was a little high when I had my vitals taken, so I guess I was still a little annoyed.
I have been taking iron supplements for the last 2 months, so I was supposed to have my iron levels checked today, but that wasn't on their list. Things just weren't going smoothly today.
The good news is that when I met with Mary and Muriel, my pathology reports from last month still show no M-spike or monoclonal protein. That's great! This begins Cycle 20 of my maintenance therapy, and so far, so good. That added some perspective to my day. How trivial are these minor inconveniences I've been grumbling about compared to the news that I am still in remission! I mean really, this is a good day.
Mary put in an order to have my iron profile tested today while getting my Zometa infusion. After I got home, I checked for the results on the Dana Farber Patient Gateway website. I was disappointed to learn that after 2 months of iron supplements, my iron level is still quite low. The result was 34 ug/dL, vs. a normal range of 49-181. That's up from my January level of 24, but not by much. My ferritin only increased from 10 to 11 (normal range 20-400). Also, my TIBC only dropped from 507 to 492, with the normal range being 250-450. I'm a little concerned by this. This persistent iron deficiency, along with my other chronic anemia situation (low HCT & Hgb), has me puzzled. I'm going to continue taking iron supplements, but I'm not sure what good they are doing. I haven't had an occult blood test yet, so I'm thinking of checking in with my PCP to make sure I don't have any internal bleeding.
I still don't have any results yet from my bone marrow biopsy from last week. Those results might be available later this week. That will be the real test of the depth of my remission. I'm still a little sore from the procedure, so I will make it a definite point to request my favorite PA to do the BMB next time.
On my other cancers of interest, I have a mohs surgery scheduled for Wednesday on the "possible invasive squamous cell carcinoma" on my right cheek. I also have an excision surgery scheduled for April 2 for the "well-differentiated squamous cell carcinoma" on my right arm. Never a dull moment!
Monday, March 3, 2014
Bone Marrow Biopsy
This past week, I had a wonderful golfing vacation in Ocean Isle Beach, North Carolina. Despite playing poorly and losing many balls in either the woods or the water during the week, it was a wonderful time...mostly good weather, great company, and awesome food. We got to play in shorts most of the week and only got rained out on one day. What a nice getaway! Being able to spend quality time with my son, Jeff, my brother, Terry, and my great friend, Bobby, was priceless.
The only glitch was that I inadvertently picked up the wrong laptop at the security checkpoint at Logan Airport on our way out last week. I discovered the error before boarding our flight and returned the wrong computer to security, but mine was nowhere to be found. I was able to send a message to my missing iMac from my iPhone to display my phone number to whoever opened it. Fortunately, the person who had my computer got the message and called me after we got to Ocean Isle Beach, saying that he had it and would get it back to me. Whew! That lifted a potential cloud over my vacation. To make a long story short, he retrieved his computer when he got back to Boston, and I finally picked up my laptop today from his home in Cambridge on my way to the Farber. I've felt lost without it. My computer is my blankey. Now that I have it back, I can update this blog.
My visit to the Farber today was less fun than usual. It was time for my annual bone marrow biopsy (BMB). The last two years, I had Zach as the Physician's Assistant (PA) who performed it, which wasn't too bad. This time, I forgot to ask specifically for Zach, so I got another PA instead. She was really good (as they all are at the Farber), but the procedure still seemed somewhat more painful than I recall from the last time, so I must remember to ask for Zach again next year. I'm still a little sore. I have volunteered for them to take extra samples of my bone marrow to aid in scientific research, so that adds a little to the procedure. It's worth it though, if I can contribute in any way to finding a cure for this pernicious disease. This was still much easier than the first time I had a BMB performed by my original hematologist in May 2011 before my initial diagnosis. That was a real ouch (I don't think he liked me)! Anyway, I'll find out the results in a couple of weeks. I'm keeping my fingers crossed that I am still in remission. It's coming up on three years since my initial diagnosis, so I'm really happy with my condition right now.
My son, Jeff, noticed last week was that I was full of energy and able to get through all the rounds of golf with no problems. I even played 27 holes on one day. I only napped on the one day that we got rained out. Despite all my knee problems a few months ago, it didn't bother me at all last week. So looking back on it, I think I did OK. Not bad for an old fart.
While at the Farber, I picked up the latest copy of their monthly news summary, "Inside the Institute". The feature article by Nikhil Munshi, one of the MM specialists at the Farber, addressed the genetic diversity among MM patients. The findings showed that MM in each patient is a jumble of cell clusters with different mutations. Also, the disease is not consistent over time, with new mutations continuously forming. From previous research, I already knew this was the case for those with the t(4:14) genetic abnormality, but apparently this is also true across the board.
Dr. Richardson was part of this research team. Using DNA myeloma samples from 84 patients (I could possibly be one of them), they found that each tumor sample had an average of over 50 mutations, and no one mutation was found in every sample! In some samples, the the type and number of mutations stayed relatively constant over time, but in others, mutations that weren't present at diagnosis became very common later on.
Much of the promising research these days is to use genomic information to find individualized targeted therapies to treat MM. These latest results imply that this may be more difficult than first hoped. MM appears to be a moving target, even within each patient. How do you deal with this?
Putting a positive spin on these results, Munshi said, "We are at the cusp of the use of targeted therapies for myeloma. This study makes it clear that such therapies will work best if they not only block critical mutations, but if they slow or stop the evolution of new and different mutations in the cells."
It seems obvious to me that despite recent advances, the medical community is still a long way away from developing individualized therapies for MM. In the meantime, we can all take hope in the promising new drugs now in use and under development that seem to be working for a large segment of MM patients. Keep the faith!
The only glitch was that I inadvertently picked up the wrong laptop at the security checkpoint at Logan Airport on our way out last week. I discovered the error before boarding our flight and returned the wrong computer to security, but mine was nowhere to be found. I was able to send a message to my missing iMac from my iPhone to display my phone number to whoever opened it. Fortunately, the person who had my computer got the message and called me after we got to Ocean Isle Beach, saying that he had it and would get it back to me. Whew! That lifted a potential cloud over my vacation. To make a long story short, he retrieved his computer when he got back to Boston, and I finally picked up my laptop today from his home in Cambridge on my way to the Farber. I've felt lost without it. My computer is my blankey. Now that I have it back, I can update this blog.
My visit to the Farber today was less fun than usual. It was time for my annual bone marrow biopsy (BMB). The last two years, I had Zach as the Physician's Assistant (PA) who performed it, which wasn't too bad. This time, I forgot to ask specifically for Zach, so I got another PA instead. She was really good (as they all are at the Farber), but the procedure still seemed somewhat more painful than I recall from the last time, so I must remember to ask for Zach again next year. I'm still a little sore. I have volunteered for them to take extra samples of my bone marrow to aid in scientific research, so that adds a little to the procedure. It's worth it though, if I can contribute in any way to finding a cure for this pernicious disease. This was still much easier than the first time I had a BMB performed by my original hematologist in May 2011 before my initial diagnosis. That was a real ouch (I don't think he liked me)! Anyway, I'll find out the results in a couple of weeks. I'm keeping my fingers crossed that I am still in remission. It's coming up on three years since my initial diagnosis, so I'm really happy with my condition right now.
My son, Jeff, noticed last week was that I was full of energy and able to get through all the rounds of golf with no problems. I even played 27 holes on one day. I only napped on the one day that we got rained out. Despite all my knee problems a few months ago, it didn't bother me at all last week. So looking back on it, I think I did OK. Not bad for an old fart.
While at the Farber, I picked up the latest copy of their monthly news summary, "Inside the Institute". The feature article by Nikhil Munshi, one of the MM specialists at the Farber, addressed the genetic diversity among MM patients. The findings showed that MM in each patient is a jumble of cell clusters with different mutations. Also, the disease is not consistent over time, with new mutations continuously forming. From previous research, I already knew this was the case for those with the t(4:14) genetic abnormality, but apparently this is also true across the board.
Dr. Richardson was part of this research team. Using DNA myeloma samples from 84 patients (I could possibly be one of them), they found that each tumor sample had an average of over 50 mutations, and no one mutation was found in every sample! In some samples, the the type and number of mutations stayed relatively constant over time, but in others, mutations that weren't present at diagnosis became very common later on.
Much of the promising research these days is to use genomic information to find individualized targeted therapies to treat MM. These latest results imply that this may be more difficult than first hoped. MM appears to be a moving target, even within each patient. How do you deal with this?
Putting a positive spin on these results, Munshi said, "We are at the cusp of the use of targeted therapies for myeloma. This study makes it clear that such therapies will work best if they not only block critical mutations, but if they slow or stop the evolution of new and different mutations in the cells."
It seems obvious to me that despite recent advances, the medical community is still a long way away from developing individualized therapies for MM. In the meantime, we can all take hope in the promising new drugs now in use and under development that seem to be working for a large segment of MM patients. Keep the faith!
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