Okay, here are my thoughts. I haven't been updating this blog often enough, so what should I do? I have noticed that when I don't have a specific topic to write about, I tend to wait until some inspiration occurs. That hasn't been happening often enough lately, so I'm thinking about taking a different tack. I have noticed that if I sit down to write without a real plan and just start typing, sometimes I get inspired along the way. Maybe this is one of those times. So here it goes.....
....OK, just stick with me here for a minute while I wait for the creative juices to start flowing....
....Well, it didn't work this time. I still don't feel inspired. Damn! I was sure this would unleash a torrent of priceless prose. Maybe I'll just settle for the mundane.
Yesterday I went to the Farber for my iron tests. The results were inconclusive. Some numbers got better and others got worse, a mixed bag. I won't bore you with the details, but basically I am still iron deficient. The upshot is that I have the opportunity to get my iron counts up to normal by taking a one-time injection instead of months of wrestling with those damn iron pills. I decided to go for it, so on Sept. 30 I will go to the Farber for an injection of 2000 mg of Dextran, which should instantly boost my iron levels back to normal. It's a 4-5 hour process, but assuming I don't have any adverse reaction, I shouldn't need any more supplements after that infusion. I'll take a book to read.
I also attended the first session of the Writing Workshop yesterday at the Farber. Wow! What a treat! Amy Boesky is our moderator, a writing professor at BC. She is so inspirational and challenging. She gives us a prompt every month based on a poem and asks us to respond to the essential premise of that poem in ten minutes. What a challenge! As you know from my previous blogs, I tend to be deadline driven. Some of my best efforts have come from these quick challenges. I did OK yesterday. Most of the group suggested I post my response on my blog, but I'm not comfortable with that. The bigger question is what am I going to do with all of this writing stuff. Maybe a memoir? I have been encouraged to consider consolidating my blog posts into a book. I don't know if I have time for that. In my last blog post, I used the phrase "I don't have a life". I got a lot of shit about that from a couple of my readers. They are right. I do have a life, and I do have something to offer. Maybe a book is in my future, but I don't yet know what it would be about. Amy offered to help me organize it if I ever decide to go in that direction. Hmmm.
There is a lot going on in the MM community. Pat Killingsworth just posted a blog about a recent Cure Talk audio broadcast on the importance of achieving Minimal Residual Disease (MRD) in MM. Pat was a panel member in this is hour-long session with Dr. Guido Tricot, which I found to be extremely interesting. Tricot is of the persuasion that hitting MM hard up front and achieving MRD is extremely important in treating MM. He comes from the Arkansas faction of MM therapists who give lots of chemo, do tandem autologous transplants, consolidation and long-term maintenance therapy. Their program requires one to take months hospitalized dedicated to the program. They claim to be able to cure MM with this approach in most low-risk MM patients. Here is a link to the Cure Talk audio for those who might be interested: minimal-residual-disease-with-dr-guido-tricot.
The upshot is that Dr. Tricot feels it is very important for newly-diagnosed patients to achieve MRD with their initial therapy, especially for those who are at high risk (e.g., t(4:14)), such as myself. He eschews the incremental approach to contain the disease and then try to control it later after it relapses. Once MM relapses, your life expectancy goes into a downward spiral. Salvage therapies usually don't last long, and then one has to keep trying new drugs to extend survival a few more months. Of course, there are new drugs out there, but at some point the options run out.
He goes to the extreme of suggesting tandem ASCTs for newly-diagnosed patients, along with substantial chemotherapy drugs, similar to the Total Therapy 3 approach of the Arkansas group. I'm not sure I go to that extreme, but I agree with him in principal about hitting it hard up front. I feel so fortunate to have found Dr. Richardson, who subscribes to a lot, but not all, of his approach (mongoose vs. cobra). After all of the agonizing I went through, I am now confident that my decision to do the ASCT clinical trial was the right one. I was selected for the single vs. tandem ASCT arm, which Dr. Richardson preferred. Thankfully, I have not only achieved MRD as shown by the bone marrow biopsy flow cytometry results, but also Stringent Complete Response (sCR) based on continued negative results from my blood and urine tests. From what I have read, I have a good chance of staying in remission for a long time. Yay! But time will tell.
Now see. I didn't have anything to write about when I sat down at my computer here, but now I have managed to waste your time with several paragraphs of drivel. I have more drivel I could write about now, but I think you all may have reached your drivel limit.
Friday, September 19, 2014
Tuesday, September 16, 2014
House Hunting
Today Gretchen had another followup visit with Dr. Rotondo, her orthopaedist. The news was good: her break is healing normally. It has been 8 1/2 weeks since her fall, but it is a slow process. Although she doesn't have to wear the boot all the time, she still wears it a lot because her foot hurts when she walks around without it for too long.
Since this accident, I have been serving as her personal chauffeur and gopher. I haven't minded it at all since I have no life. It gives me a sense of purpose, and I am happy to help. A few days ago, she drove her car for the first time into Newburyport while wearing her boot. With her typical candor, she admitted this to Dr. Rotondo, who was less than plussed (i.e., nonplussed). He told her that if she were to run into a tree while driving with her boot on, to make sure to disavow getting his approval to do so. (I suspect he might have had a flash vision of a malpractice suit in his future.) He suggested that she wear the boot to the car, remove it while driving, and put it back on when she gets to where she is going. We both agreed that sounded like good advice. I don't know why neither of us had thought of that. I guess that's the kind of good stuff they teach you in Medical School.
Gretchen also got fitted for an Ankle Stabilizing Orthotic (ASO) today, which can serve as a bridge between the boot and normal shoes. This should make it easier for her to get around while the slow healing process takes its normal course.
The house-hunting process has been dragging, so we typed up a letter to put in the mailbox of any house with curb appeal that looks like we might like to buy. Using the mobile Zillow app on my iPhone, we can check out the basic information on each house of interest to see if it might fit our requirements. We scoured our town of West Newbury, and found about a dozen prospects where we left the flyer. We have actually gotten two responses so far. One said they were not in the market now, but might be by next spring. The other one just contacted us and said they might be willing to sell, so we have made a tentative appointment to go see their house on October 2. Considering how few letters we have distributed, I think that has been a pretty good response rate. We may expand our search to the neighboring towns over the next few weeks.
Our new landlord, Nancy, moved a lot of her stuff into the cottage last Saturday. She remains firm that she doesn't want us to leave until we have found the right place. She is also not planning to put her house up for sale until next spring, so there is a possibility that we could stay here over the winter. We would have to negotiate a new rental agreement to stay beyond December at a more market-based rate if we haven't found a place by then, which is only fair. In a way, it's nice not to have a lot of pressure to get everything done right away. On the other hand, it's an easy excuse to procrastinate and be lazy about things we know we're going to have to do eventually. Anyone who knows me knows that I never put things off until the last minute. Next joke!
Thursday, I go back to the Farber to meet with my benign hematologist, Dr. Connors, to evaluate the effect of the iron pills I have been taking for my anemia. Since my numbers looked really good at my last regular visit, I suspect it should be a good report. I hope I can stop taking those iron pills 3 times a day. Every time it becomes a wrestling match between the wrapper and me as I try to extricate the pill from its nearly impenetrable enclosure. I don't think nuclear warheads are protected as carefully.
I'll give a report on my results, hopefully in a timely way.
Since this accident, I have been serving as her personal chauffeur and gopher. I haven't minded it at all since I have no life. It gives me a sense of purpose, and I am happy to help. A few days ago, she drove her car for the first time into Newburyport while wearing her boot. With her typical candor, she admitted this to Dr. Rotondo, who was less than plussed (i.e., nonplussed). He told her that if she were to run into a tree while driving with her boot on, to make sure to disavow getting his approval to do so. (I suspect he might have had a flash vision of a malpractice suit in his future.) He suggested that she wear the boot to the car, remove it while driving, and put it back on when she gets to where she is going. We both agreed that sounded like good advice. I don't know why neither of us had thought of that. I guess that's the kind of good stuff they teach you in Medical School.
Gretchen also got fitted for an Ankle Stabilizing Orthotic (ASO) today, which can serve as a bridge between the boot and normal shoes. This should make it easier for her to get around while the slow healing process takes its normal course.
The house-hunting process has been dragging, so we typed up a letter to put in the mailbox of any house with curb appeal that looks like we might like to buy. Using the mobile Zillow app on my iPhone, we can check out the basic information on each house of interest to see if it might fit our requirements. We scoured our town of West Newbury, and found about a dozen prospects where we left the flyer. We have actually gotten two responses so far. One said they were not in the market now, but might be by next spring. The other one just contacted us and said they might be willing to sell, so we have made a tentative appointment to go see their house on October 2. Considering how few letters we have distributed, I think that has been a pretty good response rate. We may expand our search to the neighboring towns over the next few weeks.
Our new landlord, Nancy, moved a lot of her stuff into the cottage last Saturday. She remains firm that she doesn't want us to leave until we have found the right place. She is also not planning to put her house up for sale until next spring, so there is a possibility that we could stay here over the winter. We would have to negotiate a new rental agreement to stay beyond December at a more market-based rate if we haven't found a place by then, which is only fair. In a way, it's nice not to have a lot of pressure to get everything done right away. On the other hand, it's an easy excuse to procrastinate and be lazy about things we know we're going to have to do eventually. Anyone who knows me knows that I never put things off until the last minute. Next joke!
Thursday, I go back to the Farber to meet with my benign hematologist, Dr. Connors, to evaluate the effect of the iron pills I have been taking for my anemia. Since my numbers looked really good at my last regular visit, I suspect it should be a good report. I hope I can stop taking those iron pills 3 times a day. Every time it becomes a wrestling match between the wrapper and me as I try to extricate the pill from its nearly impenetrable enclosure. I don't think nuclear warheads are protected as carefully.
I'll give a report on my results, hopefully in a timely way.
Tuesday, September 2, 2014
Farber Day
The day after Labor Day is not a fun day to commute into Boston. It took me an hour and 45 minutes to make my way into the Farber this morning for my monthly checkup. Not to worry. The overflow of patients from the holiday had everything backed up a half hour or more in the waiting room. I'm used to this, so it didn't bother me. It is what it is. I just relaxed with my laptop, checked the news and played Sudoku online.
My results today were great! For the first time in many years, I am no longer officially anemic! My Hemoglobin level (Hgb) came in at 13.7 (normal range is 13.2-16.7). Yay! Last month it was 12.9. Until I started taking supplemental iron pills in January, my Hgb had ranged from 10.5 to 12 over the last many years. The other measures of anemia include red blood cell count (RBC) and Hematocrit (HCT). Both of those numbers had also been consistently low. Now both are in the normal range. I do seem to have more energy (although I still take afternoon naps often), and I haven't been sleeping as long at night. I'm actually feeling really good!
On September 18, I go back to the Farber to meet with the benign hematologist NP, Samira, to assess the effect of the iron pills I have been taking. I have a feeling that I may be able to either cut back or stop taking them. That would be great. They are a major pain in the ass to open. They have a foil seal that you have to get the edge lifted up just right to peel the seal off the pill. Sometimes I have to take scissors just to get at the damn thing. Grrrr! Why do drug companies have to wrap their pills as if they are some kind of gift from God that only the worthy can discover the secret of how to open them? I must not be worthy. It pisses me off!
Another piece of good news is that Paul has agreed to my request to cut back on my Zometa infusions to every other month instead of monthly. That's great, as I won't have to get an IV inserted every month, and my visits will be a lot shorter on the off months. I can feel my veins are shrinking in horror with this monthly sticking, so I think they will be happy with the time off. I will miss seeing my infusion nurse, Heather, on the off months though. Oh well, every silver lining has a cloud.
My other numbers were great too. My neutrophils and platelets are all OK, so I can continue with the Revlimid. I'm entering the 26th month of my three-year Rev maintenance therapy and there is still no detectable M-spike or monoclonal gammopathy. I don't know why I didn't do this before, but I asked my nurse, Mary, for a copy of the lab test results and pathology report from my last bone marrow biopsy in March.
The first thing I found interesting was that the Mayo Clinic lab report FISH test for chromosome abnormalities showed that everything was normal! There was no indication of the t(4:14) abnormality that I was initially diagnosed with in 2011. Really? Mary suggested that this could be due to the fact that I now have minimum residual disease (MRD), and there were only 83 plasma cells identified for analysis. So do I have the t(4:14) abnormality or not? If not, maybe I'm not high-risk after all. That would be nice, to say the least. I think I might want to ask Paul about this.
The other report I got showed the pathology results of the BM biopsy in March. Everything looked normal except for the following observation, "...occasional atypical plasma cells suspicious for involvement by a plasma cell disorder." Hmmm. I am now reminded of Paul Richardson's apt metaphor about the mongoose and the cobra. The cobra is MM and his view is that you hit it hard up front until the therapy (mongoose) has the cobra confined to a box. The mongoose then sits on the box so the cobra can't get out. That's what my Rev maintenance therapy is now doing...sitting on that box. But this pathology report shows that the cobra is not dead, just dormant. If I make it through to next July with this maintenance therapy without a relapse, then I go off the Rev. Without the mongoose on the box, what will the cobra do? Will it come out and sink its fangs into my bone marrow again? Probably so, but when? It will be a ticking time bomb. I guess I'll just have to wait and see.
On a lighter note, Gretchen is doing well in her recovery from her broken foot. She is able to put some weight on it without the boot, which is progress. She'll be able to drive her car much better without the boot. Without my knowing, she has been taking the car out for short drives wearing the boot. I get a clue when I find mail from the end of our road sitting on the counter. I don't blame her...I would do the same thing. But if you happen to be in West Newbury over the next several days, watch out for a green Subaru Forester and give it a wide berth. (Just kidding!)
Still no progress in finding a new home. We are thinking about generating a flyer to put in someone's mailbox asking if they are interested in selling if we see a neighborhood and a house we think we might like. We know of several people who have used this successfully to buy their homes. Not a lot of opportunities are coming up right now, so maybe this strategy will help.
My results today were great! For the first time in many years, I am no longer officially anemic! My Hemoglobin level (Hgb) came in at 13.7 (normal range is 13.2-16.7). Yay! Last month it was 12.9. Until I started taking supplemental iron pills in January, my Hgb had ranged from 10.5 to 12 over the last many years. The other measures of anemia include red blood cell count (RBC) and Hematocrit (HCT). Both of those numbers had also been consistently low. Now both are in the normal range. I do seem to have more energy (although I still take afternoon naps often), and I haven't been sleeping as long at night. I'm actually feeling really good!
On September 18, I go back to the Farber to meet with the benign hematologist NP, Samira, to assess the effect of the iron pills I have been taking. I have a feeling that I may be able to either cut back or stop taking them. That would be great. They are a major pain in the ass to open. They have a foil seal that you have to get the edge lifted up just right to peel the seal off the pill. Sometimes I have to take scissors just to get at the damn thing. Grrrr! Why do drug companies have to wrap their pills as if they are some kind of gift from God that only the worthy can discover the secret of how to open them? I must not be worthy. It pisses me off!
Another piece of good news is that Paul has agreed to my request to cut back on my Zometa infusions to every other month instead of monthly. That's great, as I won't have to get an IV inserted every month, and my visits will be a lot shorter on the off months. I can feel my veins are shrinking in horror with this monthly sticking, so I think they will be happy with the time off. I will miss seeing my infusion nurse, Heather, on the off months though. Oh well, every silver lining has a cloud.
My other numbers were great too. My neutrophils and platelets are all OK, so I can continue with the Revlimid. I'm entering the 26th month of my three-year Rev maintenance therapy and there is still no detectable M-spike or monoclonal gammopathy. I don't know why I didn't do this before, but I asked my nurse, Mary, for a copy of the lab test results and pathology report from my last bone marrow biopsy in March.
The first thing I found interesting was that the Mayo Clinic lab report FISH test for chromosome abnormalities showed that everything was normal! There was no indication of the t(4:14) abnormality that I was initially diagnosed with in 2011. Really? Mary suggested that this could be due to the fact that I now have minimum residual disease (MRD), and there were only 83 plasma cells identified for analysis. So do I have the t(4:14) abnormality or not? If not, maybe I'm not high-risk after all. That would be nice, to say the least. I think I might want to ask Paul about this.
The other report I got showed the pathology results of the BM biopsy in March. Everything looked normal except for the following observation, "...occasional atypical plasma cells suspicious for involvement by a plasma cell disorder." Hmmm. I am now reminded of Paul Richardson's apt metaphor about the mongoose and the cobra. The cobra is MM and his view is that you hit it hard up front until the therapy (mongoose) has the cobra confined to a box. The mongoose then sits on the box so the cobra can't get out. That's what my Rev maintenance therapy is now doing...sitting on that box. But this pathology report shows that the cobra is not dead, just dormant. If I make it through to next July with this maintenance therapy without a relapse, then I go off the Rev. Without the mongoose on the box, what will the cobra do? Will it come out and sink its fangs into my bone marrow again? Probably so, but when? It will be a ticking time bomb. I guess I'll just have to wait and see.
On a lighter note, Gretchen is doing well in her recovery from her broken foot. She is able to put some weight on it without the boot, which is progress. She'll be able to drive her car much better without the boot. Without my knowing, she has been taking the car out for short drives wearing the boot. I get a clue when I find mail from the end of our road sitting on the counter. I don't blame her...I would do the same thing. But if you happen to be in West Newbury over the next several days, watch out for a green Subaru Forester and give it a wide berth. (Just kidding!)
Still no progress in finding a new home. We are thinking about generating a flyer to put in someone's mailbox asking if they are interested in selling if we see a neighborhood and a house we think we might like. We know of several people who have used this successfully to buy their homes. Not a lot of opportunities are coming up right now, so maybe this strategy will help.
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