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Monday, December 15, 2014

Urologist Visit

Today I had an appointment with a PA urologist, Susan Palmer, to followup on my recent high PSA reading of 10.5.  She was very competent, knowledgeable and informative.  I have to admit that having my deepest internal anatomy probed by a beautiful 30-something woman was, well...different.  I don't know what else to say about that.

Anyway, there is no surface indication of a tumor, although one lobe is larger than the other, which is not unusual.  The interesting thing about prostate cancer is that there are no reliable non-invasive tests.  The PSA test is only an indicator of possible problems, as is the physical examination.  The only way to know is to do a biopsy, which is an uncomfortable procedure and is not without the risk of infection (3%).

As is my wont, I had done a some research in recent years about the efficacy of doing the PSA test.  Many physicians and organizations advise against it for a variety of reasons, including false positives and negatives, the slow growth rate of prostate cancer, and the potential debilitating side effects of treatment.  Since I have no family history of prostate cancer, I suspended taking the PSA test after 2009, when my number was about 2.0.  As I mentioned in a previous post, I only opted to revisit this test because of the potential risk of secondary cancers associated with my MM chemo treatments.

I had a very good discussion with Susan about my options, one of which would be "See ya later".  I don't have any unusual symptoms and have no trouble urinating.  Also, I have not noticed any recent changes that might be cause for suspicion.  Therefore, I opted to have another PSA test done in a couple of months.  At that time, we can see if my elevated test result was an anomaly, whether it is stable, or is increasing.  If it goes any higher, I think I would opt to have a biopsy done.  Otherwise, I would probably just continue to monitor it.  If I do end up having a biopsy and the results were to be positive, that would bring up a whole new set of decision options to consider. 

Susan made an interesting point.  If one's life expectancy is less than 10 years, they generally do not recommend drastic treatment options for newly-diagnosed prostate cancer, because it is slow-growing and usually takes ten years or more to metastasize into a life-threatening situation.  Now I am a real optimist.  I personally expect to be here to continue to amaze, amuse, and confound everyone around me ten years from now.  But statistically, that would make me an outlier. 

So!  Here's the bottom line.  I'm not going to do anything drastic.  I will await my next test results in February and take it from there.  In the meantime, I don't plan to worry my pretty little head about it.  There is life to be lived, and that's what I'm going to do.

Saturday, December 13, 2014

Orlando and Farber Patient Symposium

Things are a little bit crazy right now.  We just returned Monday from 6 wonderful days vacationing in Orlando, Florida with Jason and his girlfriend, Jessica.  No, we didn't buy the time share they tried to sell us during the obligatory sales pitch.  It sounded like a pretty interesting proposition, but to buy both a house and a time share at the same time would be the height of foolishness.  I've been known to be foolish, but not that foolish.  Besides, we both think that a time share would be too constraining on our choice of future vacations.  We don't like limits on where we can go, even if they are broad limits.

We had a terrific time with Jason and Jessica!  We bought multi-day, two-park tickets to the Universal Studios and Islands of Adventure parks, and we spent most of Thursday and Friday there.  It wasn't crowded and the lines were only 5-10 minutes for most rides, so we got the most out of it.  Unfortunately, Gretchen can't do any of the rides because of her head injury, but she enjoyed kibitzing and chatting with people while the rest of us were whirled, dashed and thrashed around in dizzying 3-D rides and death-defying roller coasters.  I'm proud of myself that I almost threw up only once.  Young people are so great to be around...they infuse an energy and vitality that makes us feel young again.  The two Harry Potter attractions were terrific (especially Diagon Alley)!  I would highly recommend them if you decide to visit Universal, that is if you can afford it.  In a stroke of marketing genius, each of the Harry Potter attractions is in a different park, so you have to buy a two-park ticket to experience the whole thing. 

Dinner at Clearwater Beach
Then on Saturday, we drove to Clearwater Beach, where we sunned ourselves in the 80 degree temperatures and dipped our toes in the waters of the Gulf.  We capped off the day with a delightful dinner on a waterfront deck as we watched the sun set. Nice!

Reality set in as we returned home to Boston on Monday to face a temperature of 23 degrees (yikes!), followed by a Nor'easter with howling winds that dumped 5 inches of rain on us over the next couple of days.  It could have been worse.  It could have been 3-4 feet of snow.  Now why is it that we're buying a house in Massachusetts again?  Please remind me.

Today I went in to the Farber to attend their annual Patient Symposium, where Ken Anderson, Paul Richardson, and others brought us up to date on the latest MM laboratory and clinical research, including results from the ASH conference held last weekend in San Francisco.  This the 4th time I have attended this Symposium, and it is always an exciting, uplifting experience.  I'm looking forward to being around to attend many more.  It's really encouraging to see how much progress is being made in finding new MM treatments from year to year.  I was especially interested in the encouraging new results for monoclonal antibodies and immunization approaches, as well as recent progress in genome sequencing giving better understanding of MM mutations.  I haven't had a chance to digest all the information yet (it's like drinking from a fire hose), but I hope to provide a summary in a future post.

Sunday, November 30, 2014

Thanksgiving

I had my monthly visit to the Farber on Monday.  All my numbers still look good!  My iron results are still great after my Dextran infusion last month.  I have noticed a distinct increase in my energy level.  While I still sleep a lot (10+ hours a night), I haven't been tired during the day, so I haven't been napping much lately.  Here it is about 11:30 pm, and I am still pretty wide awake.  Yahoo!

We got our first snowfall of the winter this past week.  I wasn't quite ready for it.  I have a cord of wood sitting in the driveway waiting to be stacked in the garage, and there are still some plantings to be cut down for the winter.  At least I finally got most of the leaves blown away or scooped up with my mower before the snow hit.  I've been a little bit lazy about getting all this done.  Maybe it's because I know it's the last time I'll be doing this here.  Or maybe I'm just lazy.  Anyway, I hope to get these things out of the way over the next couple of days.

We had a nice, comfortable Thanksgiving.  Because our family is dispersed, only Jeff and Christine, along with her mother and sister were here.  I roasted a 16-pound turkey on the grill and Gretchen worked her usual magic with all the fixins.  Everything was delicious!  It has always been our favorite holiday, and it was special to celebrate it here for our last time in this house.

Yesterday, we had our special friends, Bobby and Cathy, along with their children and spouses and granddaughter, for our traditional Christmas Tree hunt.  We do this every year on the Saturday after Thanksgiving.  We went to a local tree farm and selected Christmas trees to cut down.  Afterwards, we come back here for gumbo and chicken enchiladas.  Delicious!  This year, Gretchen and I thought we might not have a tree at all, since we will be moving soon, but we then the decided to get a small tree.  We found a tree that looked a lot bigger than what I thought we were looking for, but Gretchen really liked it.  OK, so I decided to cut it down.  Jeesh!  The saws they gave us must have been really dull, because it took me about 10 minutes to cut that sucker down (pant, pant).  We struggled to haul that thing on a sled all the way to the front to pay for it.  When we got there, we realized that this tree was actually much larger than we had thought, so we pleaded with the owner to trade it in for a small tree at the entrance that was already cut.  Gretchen did the talking, so they agreed, and we now have a nice small tree.  All that work wasted!  But I'm really glad to have a small tree for a change.

On Wednesday, Gretchen and I are flying to Orlando, Florida for 5 nights.  This is a reprise visit from our last visit in the spring to look at buying a timeshare from the Marriott.  We still aren't planning to buy one (Hello!  We just bought a house), but we still have to sit through a 1-hour presentation while there.  Jason and his girlfriend, Jessica, spent this Thanksgiving with her parents, but they are both coming to Orlando with us this week.  That should be a lot of fun.  She has never been on a plane before (!!), so this should be a real treat for her.  I just checked the weather and it looks like it might be in the mid 70's for the week without much or any rain.  That would be awesome!  They (and I) like adventures, so we may go to Universal Studios, and then perhaps drive to Clearwater Beach for a day.  Who needs to pack for a move, right?

Speaking of moves, we are proceeding with getting a mortgage and are still planning to close on January 2, 2015.  The owners of our future home, Ed and Claire Flaherty, have decided to put their furniture in storage and rent a place on Salisbury Beach on the Ocean for 6 months.  They got that idea from us, as we were thinking of doing that before Nancy, the new owner of our house, offered us a very reasonable rent to stay here.  They plan to move out before Christmas!  Well guess what, we aren't ready to move yet.  We have no intentions of rushing around trying to pack everything before the Holidays, so we are just going to chill for a bit.  I mean really, let's not get our bowels in an uproar over this.  Everything will happen in due time.


Sunday, November 16, 2014

Annual Physical

Well, it's official.  The P&S has been signed for our new house.  We are looking to close on January 2, although we still don't know when we will be moving in.  Nancy, who bought our house, would be happy for us to stay here through the winter, as she won't be moving in before spring.  That gives us a lot of flexibility to allow the owners of our new house to stay for a while if they need time to find their new home.  I don't know when this game of musical chairs will end.

I haven't had an annual physical for a while, so I recently scheduled one.  After the obligatory proctology exam (bend over and smile), Dr. Guidi informed me that my prostate is somewhat enlarged.   Over the years, I have elected not to have my PSA tested during normal blood tests.  The last time I had a PSA test was at least 15 years ago, and my number was below 2.  There is a lot of controversy in the medical community about the necessity for the PSA test, as it often reveals false positive results, which may lead to over-treatment of either benign or slow-growing prostate tumors.  Besides, I had no family history of prostate cancers.  So I again told the doctor not to schedule the PSA test when I came in for my blood test the next week.

When I arrived for the blood test, I suddenly made a spur-of-the-moment decision to have my PSA tested.  I changed my mind on this based on the fact that the chemotherapy I underwent for my ASCT (melphalan) and long-term use of Revlimid both have resulted in increased incidents of secondary cancers in MM patients.  For example, I had surgery to remove a squamous cell carcinoma from my face earlier this year.  I don't know that that was linked to my MM treatments, but I think I can no longer wait passively while sitting on potential time bombs like this.

A few day later, the nurse, Gail, called me with the results of the tests.  "They were mostly good", she said.  Hmmm.  So, exactly what does "mostly good" mean.  Well, she then told me that my PSA result was high.  How high?  "10.5", she said.  Gulp.  For someone my age, normal PSA results should be less than 6.5-7.5, so this is a bit out of the normal range.  She then proceeded to get me an appointment with a urologist at Lahey Clinic on December 15. 

At this point, I decided to seek Dr. Richardson's advice.  I emailed him about my results and my scheduled appointment.  I told him that if I do get diagnosed with prostate cancer, I want to be at the Farber, and who should I see?  He responded immediately and said to go ahead with my appointment next month and we can go from there once we know what's going on.  He then recommended a couple of specialists at the Farber if that becomes necessary. 

I have to admit that I'm mildly concerned, but I'm not stressed out about this.  Que sera, sera.  All I can do is wait and see.  In the meantime, The Patriots are about to play the Colts, so I have to go watch the game!

Saturday, November 1, 2014

New House

It's been a busy week.  Monday I had my monthly checkup at the Farber.  Fortunately, everything is still good with the MM.  Knock on wood.  The most interesting results were my red blood cell counts after getting the iron dextran infusion the week before.  Wow!  My hematocrit ("crit" in nurse speak) jumped from 37.7 to 44.4 (normal range is 38.4-48.2).  Similarly, my hemoglobin went up from 12.6 to 14.6 (normal range is 13.2-16.7).  That sure took care of the anemia!  I feel like Popeye--"I eats me spinach".  Watch out, Bluto!

After my appointments, Gretchen and I drove up to our summer place at the farm in upper New York state to join Jeff and Christine for a couple of days.  We had a great time cooking on the grill, sitting by the fire pit, and navigating the ATV trails.  We celebrated Christine's birthday on Tuesday by driving up to Montreal.  We had a delightful visit to the Museum of Fine Arts and then capped off the day with a wonderful meal at a nearby French (what else?) restaurant called L'Autre Saison.  It was scrumptious.  Montreal is a great city, and it is only a 45 minute drive from the farm.  Sadly, the season is coming to an end, so we closed up the place for the winter.  Until next year.

The biggest news of the week is that we have finally found a house!  Our experiment of dropping off flyers at houses that looked interesting to us has paid off.  We liked this house, and the owners got back to us saying they hadn't really thought about selling.  However, a couple of weeks later, they changed their minds.  We looked at it and it is the first house we have seen that meets all the criteria that are important to us.  It has a lot of privacy on a quiet street in a good neighborhood, an available first floor master bedroom/bathroom suite, two wood-burning fireplaces, attached two-car garage, upgraded granite kitchen and bathrooms, etc.  It even has a "drive-out" garage door in the basement that could accommodate storing our boat for the winter.  How cool is that?

 Here are some more pictures of our future home.  The eat-in kitchen features beautiful cherry cabinets and a gas stove.  It also has a three-season screened in porch that overlooks the private wooded back yard.  We haven't signed all the paperwork yet, but we are planning to close on the new place by January 2, 2015.  Hopefully, they will find a new house by then.  Otherwise, we may have to try negotiating an extension of our rental agreement here and renting our new house back to them for a couple of months.  Kind of weird, huh?  We'll see.  This is a really exciting time!

To cap off a whirlwind week, Jeff and I are going to the Patriots-Broncos game tomorrow.  This is a huge rivalry between two of the best quarterbacks of all time.  It will be a "Clash of the Titans" between Peyton Manning (#18) and Tom Brady (#12).  Some have referred to this as the "War of 1812".  Win or lose, this will be a memorable game.  It is supposed to be cold and rainy, but that's what NFL football is all about--pay $50 to park and $150 for a ticket to suffer in the stands in miserable weather with a lousy view.  Who wouldn't want to do that? 


Friday, October 24, 2014

Iron Dextran Infusion

Yesterday morning Gretchen and I fought miserable weather and rush-hour traffic conditions driving to the Farber for my scheduled infusion of iron dextran.  The total procedure took over 5 hours, so we had the pleasure of hitting the afternoon traffic on our way home as well.  Fortunately, I had no side effects or allergic reactions and the procedure went smoothly.  Hopefully, this will solve my persistent anemia without the need for any more iron pills.  We'll see.  I head back to the Farber again on Monday for my monthly checkup and Zometa infusion.  Mary McKenney didn't want me to get the iron dextran and Zometa on the same day, necessitating the two trips.

I keep getting comments on my blog post from August 28, 2012 entitled "Myeloma-Lyme Connection?  I Say Yes!"  I suspected that the reason for this is that people searching for any connection between Lyme Disease and MM must come across that particular post.  To check that, I Googled "multiple myeloma lyme connection".  Guess what the number 1 Google result is.  Yup, that's the one!  I don't know how it got there (I sure didn't pay Google to push it up the list), but I'm glad because it keeps attracting comments.  I try to respond to these comments, so the result is a continued dialog between me and other Lyme/MM sufferers.  I got another thoughtful comment the other day from a woman whose 15-year old daughter was seriously ill with Lyme Disease and had MGUS as well.  After extensive treatment for the Lyme, the MGUS disappeared.  Hmmmm.

I followed up with the Multiple Myeloma Research Foundation (MMRF) as I said I would in my last post.  I talked to an RN Millicent and suggested that they should change their list of general health categories to include Lyme Disease and other autoimmune disorders.  While she was polite, I detected a distinct lack of enthusiasm for my suggestions.  She said she would follow up, but I don't expect to hear back any time soon.  My next step is to start sending emails in the hope of getting some positive response.  I'll let you know what happens.

While at the Farber yesterday, I read an article in their newsletter about a novel compound the prevents MM from metastasizing into the bones.  Myeloma cells originate in the bone marrow, get into the blood stream, and eventually return to the bones, where they can form numerous lesions.  A substance called stromal cell-derived factor-1 (SDF-1) is a protein that attracts myeloma cells.  Mice with advanced MM had sharply higher levels of SDF-1 in the sites in their bones where metastasis had occurred.  Farber researchers, headed by Dr. Irene Ghobrial, are testing a substance called olaptesed pegol that binds tightly and specifically to SDF-1.  Lab experiments with mice have shown that olaptesed pegol alters the bone marrow, rendering it uninviting to myeloma cells, leading to prolonged survival.  It is now being tested in a clinical trial with MM patients, with more trials to come.  Great!  I'll keep an eye out for results from these trials.

Wednesday, October 15, 2014

More on Lyme

I just got a recent email from a woman who titled her email "Lyme m spike".  She had found a elevated m spike in her urine and wanted to talk to me.  She said she has not felt well for many years.  Does that sound familiar to those of you in the chronic Lyme community?  Anyway, she hasn't talked to me yet, probably out of fear.  She emailed me to say she was afraid to call me because she wasn't sure if she had MM and didn't want me to scare her any further.  I wrote back to her that she might have a precursor condition, and she should find out her status as soon as possible.  Sadly, I have not heard back from her.  Many people, faced with a possible bad diagnosis, put their heads in the sand and refuse to deal with it.  I hope to hear from her and I hope she follows up on  her initial test results.

This email has triggered me to go back to revisit my long-felt connection between Lyme disease and MM.  I belong to the Multiple Myeloma Research Foundation (MMRF,) which has enrolled a large number of MM patients to find some correlation between MM and prior medical problems.  I have listed my profile with them.  However, the list of medical problems identified in the list they provided for general medical conditions is pretty much useless.  Under their category of General Health, they offer only 13 options.  Of these, only 3 have had any positive response from MM sufferers:  high blood pressure (31%), osteoporosis (15%), and diabetes (7%).  Everything else was zero!  41% of the respondents listed "Other".  I think the MMRF has missed the boat with this.

Let's just talk about the "Other".  There is a lot of indication that autoimmune disease may be correlated with MM, as I have blogged about earlier.  Today I emailed MMRF to expand their general health categories to include Lyme disease, along with some other autoimmune disorders, such as Lupis, etc.  Furthermore, I would like the MMRF to fund some studies to investigate these links.  I plan to follow up with this and hope to get more information that can be shared among the MM community looking for common links.

At the very least, I would like to see some protocols put in place to do early screening of blood protein levels for those patients presenting with Lyme disease or other autoimmune diseases.  Early diagnosis would provide tremendous long-term benefits to those who have MM.  I was lucky to have a PCP who noticed my elevated protein levels early and referred me to a hematologist before it got out of hand.  Too many MM patients present with advanced symptoms, such as broken bones or kidney problems, when early screening would have helped to give early treatment and a better prognosis.

I'll let your know how the MMRF responds to my suggestions.




Thursday, October 2, 2014

Summer's End

In my last post, I said I was going to get an IV injection of Dextran iron at the Farber on Sept. 30.  I'm sorry but I lied.  I didn't do it.  After making the appointment, I started thinking, "What am I doing?".  This visit to the Farber would be the first time in over two years that I wouldn't need an IV, since I wasn't getting the Zometa this month.  Yay!  So why would I sign up for getting an IV that day?  Furthermore, I wasn't scheduled to come in until 10:30, so I wouldn't have been able to start my Dextran until 12:30, a 5-6 hour procedure.  Duh!  I must have had a real brain fart when I signed up for that.  So I decided to cancel that and reschedule.

As for my visit, all is good with my MM!  The pathology results from last month showed that both my blood (SPEP) and urine (UPEP) test results showed no M-spike and no monoclonal protein.  So I'm still good.  However, my red blood cell counts weren't so stellar.  My RBC dropped from 4.6 to 4.2, still in the normal range.  However, my HCT dropped from 39.4 to 37.7, below the normal range.  Also, my Hgb dropped from 12.9 to 12.6, also below the normal range.  The upshot of all of this is despite all the iron pills I've been wrestling with over the last 9 months, I'm still slightly anemic.  Jeesh!  What is it with this?

I have to wonder if I am losing blood somehow.  As far as I can recall, I haven't had any traumatic accidents involving significant blood loss.  I still have all my limbs.  Could it be from my colon?  I had a colonoscopy in April 2013 which was clear, showing no polyps.  So I should be good there, right?  Hmmm.  I have scheduled an annual (or is it a bi- or tri-annual) physical in a couple of weeks.  I think I will bring subject this up with my PCP.  Maybe this planned infusion of Dextran will solve the problem, but if I am slowly losing blood by some mechanism, that might only be a temporary solution.  We'll see.

I've been kind of busy the last couple of weeks.  Last weekend, Jeff and I went to the farm in New York.  We had a great time cooking out, playing some golf, riding the ATV, and socializing with the neighbors.  Then on Monday, Jeff and I went on a charter deep-sea fishing trip out of Gloucester, MA, organized by my good friend Paul Pakos.  That was fun.  I'm the only one on the boat who actually caught a rock!  I also caught a pile of seaweed and a stick.  I did catch one small pollock though.  Between us, we caught enough pollock and red fish for us all to have a couple of meals from the catch. Yum!  This Sunday, I plan to go sailing on Buzzard's Bay with another good friend, Lew, for 2 or 3 days.  We may go to Vineyard Haven on Martha's Vineyard.  I have to say that being retired doesn't suck.

The house-hunting is still going slowly.  We've seen a couple of potential properties come on the market, but nothing has floated our boat yet.  Tomorrow, we will visit one of the houses where we left a flyer who might be interested in selling, but we're not getting our hopes up.  We'll see.  

Fall is upon us.  The trees are turning color and the leaves are starting to fall.  There's a chill in the air now.  Brrr!  Now is the time to fertilize the lawn for the last time and get the boat out of the water for the winter.  It's sad to see this wonderful summer come to an end.  Sigh.

Friday, September 19, 2014

Drivel

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.



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.