Lyme Disease and Jimmy Fallon

Just as I thought my latest rant on Lyme Disease would calm me down on this topic for a bit, a couple of recent news items have inflamed my passions on this subject once again.

Last Friday, Pamela Weintrab, a CNN contributor, posted an editorial on her fight against Lyme Disease.  Here is the link to her column:  weintraub-lyme-disease.  She recounts the story of her long fight with the medical establishment to get her son properly diagnosed.  After two years after being denied treatment, despite a positive Lyme Disease test, her son "suffered aversion to light, profound fatigue and shooting pains throughout his arms and legs".  Boy is that a familiar story! After being told that her son had a psychiatric problem, it took the next decade struggling for him to get well.

As she points out in her piece, "When doctors attuned to the CDC's rigorous definition resist diagnosing any but the most classic patients -- those with an obvious Lyme rash or highly positive test -- it means patients are left to advance to later, harder-to-treat stages of the disease".  She also states that "standard tests based on legacy technology pick up real patients between just 45% and 75% of the time".  Therefore, anywhere from 25% to 55% of of patients with real Lyme Disease get a false negative on the test and may therefore go untreated.  This is an outrage!  She summarizes with the thought that those deniers in the medical establishment are "circling the wagons around outdated studies, leaving patients desperate and sick while protecting their academic turf".

Then yesterday, the Boston Globe had a front page story on Lyme Disease.  The article was generally critical of the medical establishment's lack of focus on this burgeoning epidemic.  I found the following statistics interesting:  Massachusetts spends more than $10 million on preventing mosquito-borne diseases, and only a few tens of thousands of dollars on tick-disease education.  Last year, there were 33 cases of West Nile virus and 7 cases of Eastern Equine Encephalitis in the state.  That's a spending level of about $250,000 per case of mosquito-borne disease!

However, there were more than 5,000 confirmed cases of Lyme Disease, although the actual cases are believed to be 5 to 10 times greater than reported, because so many patients go undiagnosed or do not fit the stringent reporting criteria. So the state spends about $1 per Lyme Disease case.  Let me ask you:  Are mosquitoes 250,000 times more dangerous than ticks?  I'm just going to let that question hang out there for you all to ponder.  WTF?

Jessica and Jason

Last week, our son, Jason, and his girl friend, Jessica, went to the taping of the Jimmy Fallon show in New York.  Jessica got chosen to do an on-stage skit for part of the show, which was cool. We recorded the show and watched it the next day.  However, after the show, Jason got chosen to come back this Wednesday for a special hair makeover segment.  As you can see from this recent picture, he has quite a head of hair to work with.  He has invited Jess, Gretchen and me to appear on the show with him.  We will be interviewed ahead of time, and then come back on stage after the do-over for the "reveal".  This should be very interesting!  The show will air tomorrow night at 12:30 am.  We are driving down to New York today.  After the taping tomorrow, we will rush back in time to turn around and head to San Francisco for the weekend to visit Holly and Ryan.  This business of being retired can certainly get kind of hectic!

Farber Update

Here is one of the pictures of us racing the yacht Dreamcatcher at Block Island Race Week (I'm the geek in the canary yellow).  Jeff, as usual, is crouched over a winch ready to trim the jib, an exhausting job fit only for the young, especially in heavy weather.  I don't think we old farts could have handled it.  It was a chilly day and we were waiting for the rain, which fortunately never materialized.  Despite my not feeling 100% most of that week, I had a great time! 

After not feeling so well a week ago, I have been doing a lot better since.  I feel like I have completely recovered, except I am still more tired than usual.  My blood test results last week were pretty good, except for an exceptionally high reading for alkaline phosphatase, which could indicate either bone or liver problems.  Dr. Guidi wanted to make sure that I got that retested this week.

Yesterday was my monthly visit to the Farber, and I was pleased to discover that all my blood test results had either returned to normal or to my "normally abnormal" range.  My alkaline phosphatase level was back to normal, which was somewhat puzzling.  My nurse, Mary, opined that the previous elevated count may have been caused by some sort of viral infection.  Whatever...it's OK now.  My absolute neutrophil count at 1.36 was below previous months, but might have been even lower if I hadn't taken a week's holiday from the Revlimid.  I am now back on my normal schedule of 5 mg per day of Revlimid.  So far, so good.

I read in the Farber newsletter yesterday that clinical trial data show that long-term therapy with Revlimid is very beneficial for older patients with a form of chronic blood cancer.  While this doesn't necessarily relate directly to MM, many blood cancers show some common characteristics, so I take that as an encouraging sign that my long-term maintenance strategy with Rev is probably a good thing.

Back from Sailing

 

For any of you who followed our progress on Dreamcatcher at Block Island Race Week, you know that we didn't fare too well in the competition.  For the week, we tied for 6th place out of the 10 yachts.  We usually do better than that, but the field was intensely competitive this year.  For example, on one day we finished 7th in corrected time over the approximately 3-hour race.  However, had we been 3 minutes quicker, we would have been 3rd.  Here is a picture of our boat, a 58-foot Swan.  It weighs 36,000 pounds, so it is hard to get it going in light airs, like we had most of the week.

That's OK though.  We had a wonderful time, as usual.  After missing last year due to illness (both mine and the skipper's), it was a real joy for us both to be healthy enough to enjoy this annual event again.  We're already looking forward to next year.

The week took a bit of a toll on me, however.  I came down with some kind of low-grade infection, which resulted in my feeling crappy and tired most of the week.  I was exhausted after every day of racing, so I napped before dinner and went to bed as soon a possible afterwards.  I have to say, however, that once I got on the water and began racing, I felt perfectly fine!  I was glad to get home on Saturday and catch up on some much-needed rest.

Since I am still not feeling 100% I called Mary McKenney, Dr. Richardson's nurse today.  She told me to immediately stop taking my daily Revlimid dose and get my blood tested ASAP.  So I'm off to see my PCP to get my white blood cell counts checked...

...OK, I'm back.  I had my CBC-diff blood draw taken, and I go back tomorrow morning to get the results.  I was also running a mild fever of 100 degrees, which probably explains why I still don't feel top notch.  I hope that suspending the Revlimid for the next week will help my body recover more quickly.  My regular monthly visit to the Farber is next Tuesday.

In the meantime, the whole famn damily (except Holly) is headed up to Champlain, NY, to celebrate the 4th at the farm.  I will be transporting contraband fireworks that I bought in New Hampshire, but have been storing in Massachusetts, where they are (inexplicably) illegal, one of only 4 states that ban fireworks.  To compound my scofflawness, I will be hauling this illegal cache up to New York, another state where they are (inexplicably) banned, for a July 4th extravaganza display.  Brian, Pam, and Logan will be coming up from New Jersey, where they are also banned.  If Joe Biden were to drop in for the festivities, we would have all 4 states that ban fireworks represented (Delaware is the 4th).  In a perverse way, I get a bit of a kick out of thumbing my nose at such a stupid nanny-state law.  And if I get caught?  Maybe I'd never qualify for a security clearance again.  Boohoo.

Belated Update

There hasn't been a lot of exciting developments lately, so I have been a bit lax in updating my posts.  I did go to the Farber last week and got some more good news about my continuing remission.  My numbers all looked good.  There was a time when that would be an occasion for celebrating, but things have been dormant for so long that I've almost come to expect it.  I really need to remind myself that every month of normal results is a gift, especially with this disease.  Except for tiring easily, I'm feeling great!  I have minimal side effects from the daily Revlimid dose and monthly Zometa infusion, so I have nothing to complain about.

One piece of good news is that I don't have to provide a 24-hour urine sample every month any more. Whoopeedoo!  The clinical trial protocol that I am on only requests urine samples every 3 to 4 months.  Guess which one of these options I'm going to choose.  I still have to take a few immunization shots to restore my immune system to normal.  Last week I got a Hepatitis shot.  In September, I will get another battery of shots (5 or 6), but after that, I should be OK.  I still have to take the Zometa bisphonate shots every month until next March, but after that, they will reduce it to once every 3 months.  Then, if I am still in remission, I can go off all medications, including Revlimid, by August 2015.  That would be nice.

There was a recent article in the June issue of Clinical Oncology, which I subscribe to, which showed that "Minimal residual disease (MRD) assessed by multiparameter flow cytometry (MFC) is a strong tool for predicting treatment (particularly ASCT) outcomes in patients with multiple myeloma."
  J. Clin. Oncol. 2013 Jun 03;[EPub Ahead of Print], AC Rawstron, JA Child, RM de Tute, FE Davies, WM Gregory, SE Bell, AJ Szubert, N Navarro-Coy, MT Drayson, S Feyler, FM Ross, G Cook, GH Jackson, GJ Morgan, RG Owen. 

That's good news for me, of course, since I had no MRD in my MFC after my ASCT.  However, there have been lots of recent news about good results for newly-diagnosed MM patients who received the new therapies and didn't receive stem cell transplants (ASCT).  Those who achieved Complete Response (CR) or better did just as well by postponing until first remission as those who did an early transplant.  The one issue that concerns me is what about those who are high-risk with adverse cytogenetics like me?  Most of the other clinical results that I read about don't distinguish high-risk versus low-risk results.  However, this article dealt with that issue, "This predictive value was seen in patients achieving conventional CR as well as patients with favorable and adverse cytogenetics."  That was encouraging.  I would like to see more research on how those of us with adverse cytogenetics respond to various courses of treatment.

In the meantime, I think Dr. Richardson's approach of hitting it as hard as you can up front may be especially helpful for those of us with high-risk MM, where abnormal genetic mutations are likely to occur at a higher rate than those with low-risk disease.  I would like to see more research differentiating between low-risk and high-risk MM.  Anyway, I found this article comforting.

Last year at this time I was recovering from my ASCT.  For the first time in 20 years, I had to drop out of the annual Block Island Race Week sailing regatta.  This year, however, I'm doing great, so we are doing it again!  I leave tomorrow for the week.  Most of the crew are alumni of either The Coast Guard Academy or MIT or both.  Except for my son, Jeff, and another crew member's son, Chris, I am the youngest of the 10-man crew.  The rest are in their late 70's, but they are a skilled and wily bunch, so I think we have a good chance against the other young whippersnappers with whom we will be competing.  We have chartered a 48-foot Swan, Dreamcatcher.  We've chartered it before and it is a great boat.  We will be competing in the non-spinnaker class with about 7 other yachts.  It should be exciting.  For anyone who wants to follow our progress, here is a link to the Storm Trysail website, http://www.blockislandraceweek.com/. 

While I'm gone for the week, Gretchen will be on her own.  She has now survived 4 months after her surgery without any seizures, thank goodness.  Her neurologist told her not to drive for 6 months, but that has been a huge burden for us both.  Recently, she has started driving on her own for short trips, which I think is fine.  Here's the deal:  her neurologist told her there is a 20% chance of a seizure in the 1st 6 months after a craniotomy, but the probability decreases exponentially after the operation.  I tried to figure out the odds, but it seemed too hard. But Ken, a high school friend of mine, a Penn State graduate, sent me a solution.  Either he is smarter than I am or Penn State has a better math curriculum than MIT, whatever, but he showed me that after 4 months, the probability of a seizure had dropped to about 4%.  (Thanks, Ken.)  At this point, I think the risk of Gretchen's driving are now minimal, so I think it's OK for her to drive herself wherever while I'm gone.  It still would be a good idea for her to stay off main highways for a while, just in case.

More on Lyme

I'm going to apologize in advance to my readers.  My blog has been the subject of numerous spam messages over the past few months.  Up until now, I have chosen to simply ignore them and delete them individually when I get them, but it is starting to be a real pain in the you know what.  I usually get several spam comments a day, so I have decided to add a word verification feature to require matching a word pattern manually in order to post a comment.  This will prevent the automated spam generators from infiltrating my blog site with anonymous comments.  I'm sorry for the additional inconvenience this will cause for you to post a comment, but I really want to stop the spammers from taking advantage of me.   I hope this won't discourage anyone from responding to any of my posts.

My last post on ticks and Lyme Disease triggered more than the usual amount of feedback.  Several comments were from those who went through some of the same symptoms, pains, hurdles, delays, and denials from the medical establishment that I did before they were able to get any meaningful treatment.  I think it is a disgrace and a tragedy that the Infectious Disease Society of America (IDSA) has cowed practitioners into denial on this.  As I see it, a doctor who refuses to take the simple step to either prevent or cure a patient with a tick bite of Lyme Disease by prescribing a simple regimen of antibiotics is in violation of his Hippocratic oath, part of which reads:  "I will prevent disease whenever I can, for prevention is preferable to cure."!  Hippocrates must be turning in his grave.  Come on now!

I also got some input from a couple of people with MM who had previously suffered Lyme Disease and felt that there might be a connection.  Regular readers of my blog will know that I have spent a fair amount of effort trying to find a link between Lyme and MM.  Based on CDC incidence reports of Lyme Disease and MM by region and state over the past decade or so, I tried to build a case that exposure to Lyme increased the chances of contracting MM.  I couldn't find any definitive correlation in the data that I examined, much less a causal effect.  Here is a link to my last post on this subject:  Go West Young Man.  However, I still have my suspicions based on my circumstantial evidence that an unusually high number of the MM patients I have met also had Lyme Disease at some point.  I don't think this case is closed, and I may return to this subject again some time in the future.

Tick Talk

Okay, I usually only post about once a week or so lately, but I have a bee in my bonnet now, so here goes another one.

There was a very long article in the Sunday Boston Globe today on Lyme Disease.  Here is the link to the article:  Drawing the Line in the Lyme Disease Battle.  I have to say that this really got my dander up!  I am one of the ostracized Lyme Disease sufferers that the medical community has totally disregarded to this day.  I spent an entire summer several years ago suffering numerous debilitating symptoms, such as anemia, joint pains, severe headaches, shooting pains, double vision, fatigue, blotchy rashes, two cases of Bell's Palsy (one on each side of my face), and peripheral neuropathy, just to mention a few.  I spent most of the summer in bed sleeping, wondering what was wrong with me.

After my first case of Bell's Palsy, I had blood tests done for Lyme Disease, but as usually happens, the test came back negative (several parts of the test were positive, but the strict criterion for a positive diagnosis is very high).  These tests are set up by the Infectious Disease Society of America (IDSA) with such a high threshold to prevent false positives that the the probability of a false negative is very high.  Therefore, many people who may actually have Lyme Disease won't get a positive reading on this test.  That was the case with me.

My PCP was a traditionalist, so he looked for everything else that could possibly be wrong except Lyme Disease.  Along the way, I was diagnosed with a urinary tract infection (UTI) which I didn't have.  Soon after I developed a rash all over my body which he said was allergy to the sulfa drug I took for the UTI.  What a joke!  After my stem cell transplant last year, I took a full year of the sulfa drug Bactrim every day.  So much for that diagnosis!  Then I was told I had fibromyalgia rheumatica.  I kept telling him that I thought I had Lyme Disease, but he told me one time to "get my head out of that hole".  I had done a lot of research on this subject, and his dogmatic rejection of the possibility that I might have Lyme Disease was incomprehensible to me.

That's when I wised up.  I searched out a reputable Lyme literate naturopathic doctor in New Hampshire, Dr. Margrit Mikulis.  What a godsend she was!  She immediately diagnosed me with Lyme Disease and prescribed a double dose of doxycycline for about 4 months.  After the first few weeks, I felt much better, and after a couple of months, all my symptoms disappeared.  Thank you so much, Dr. Mikulis!  I don't know where I'd be without you.

What the fuck!  I just don't get this shit.  It's really not that hard.  The ISDA has paralyzed the medical community to prevent diagnosing and treating Lyme Disease in the most cost-effective and efficient way possible.  Here is the real deal.  Any person who goes to a doctor with a tick bite should immediately be given a two week prescription of docycycline, no questions asked!  I mean, come on folks.  Doxycycline is cheap and has minimal side effects.  Teenagers are often given doxycycline for a year or more to control acne, so what's the problem with a two week prescription to either cure or prevent Lyme Disease.  I don't get it!

My daughter's boyfriend, Ryan, grew up in Nantucket, a hot bed of Lyme Disease.  Anyone in Nantucket who goes to a doctor with a tick byte automatically gets a prophylactic dose of doxycycline, no questions asked.  This is how it should be everywhere.  The downside of letting this pernicious disease invade the body and cause all of the symptoms I suffered and many more is terrible.  Why risk it?  If you get it early enough, the cure is simple and painless.  After it gets a hold of you, however, it is a lot tougher to get rid of.

After this episode, my PCP retired (thank you) and I now have a new PCP, Dr. Guidi.  He is much more in tune with reality than my former doc.  After my first bout with Lyme Disease, I got it again.  This time, I had a huge rash which made it easy for him to diagnose (see picture).  He didn't hesitate to give me a two week prescription for doxycycline, and that worked fine.  I recovered easily...no problem.


Let's fast forward to two weeks ago.  I was in the shower when I noticed a bump on my inner thigh.  I scraped at it with my finger nail and finally realized it was a nymph tick.  Shit!  I got most of it off, but there was still a little bit left in.  I  called Dr. Guidi and went to see him later that day.  The jaws of the tick were still embedded, so he used tweezers to get them out.  He wanted to know what I wanted to do.  I said I wanted a full two week dose of doxycycline, which he gave me without hesitation.  However, after one week, I had no fever or any other symptoms, so I stopped taking it.  So far, I feel fine.

As a postscript to all of this, my battle with Lyme Disease may have been beneficial after all.  Because I kept going to the doctor for my ailments, I had numerous blood tests.  Along the way, Dr. Guidi noticed than my protein levels seemed abnormally high.  That's when he referred me to a specialist, and that led to my diagnosis with Multiple Myeloma.  Maybe a lot of the symptoms that I had ascribed to Lyme Disease all along may actually have been due to MM.  I will never know.  However, I was fortunate to have been diagnosed with MM before serious damage had a chance to  affect my bones or kidneys.  Perhaps that is why I have been fortunate to have achieved such a good response to the therapy so far.

So what can I say?  Here's to Lyme Disease?  I don't know.  As Gretchen likes to say, "Everything happens for a reason".  Well, I don't know about that, but if it weren't for my travails battling Lyme Disease for a couple of years, I may not have stumbled on the real threat to my life in time.  Who's to say?

Random Thoughts

Usually I have a theme to address when I update my blog, but today I don't.  I just thought I'd ramble on about what's in my head today.

It has been a beautiful summer-type day--the kind I like.  I have to admit, however, that when the temperature got to 93 degrees, even I thought it was hot.  We haven't put our air conditioners in yet, so we cooled off by fans until evening came along.  But I love this time of year.  The forsythia and lilacs have just passed, but the rhodondendrons and wild roses are in full bloom.  The grass is green, and the lawn looks like a golf course.  That's my pride and joy.  Ever since I fired the landscaper and starting taking care of it myself, it looks awesome!  I love riding around on my John Deere and mowing the lawn.  There is something Zen-like in the experience.  I have no worries or concerns.  I just want to make the lawn look good.

We just planted all the window boxes on the deck, along with other herbs and tomatoes.  It looks great.  I was sitting out on the deck this evening watching the sunset and enjoying the surroundings, when I realized what a gift today has been.  Before MM, I don't think I ever totally realized how wonderful every day on this earth can be.  But today I did.  Life is beautiful.

We have our house up for sale, as we really need to downsize to a smaller place.  We can't consider a condo, though.  What would I do without a lawn and garden to take care of?

Pat Killingsworth has posted a few updates to his website recently that have been very uplifting and inspirational.  He has suggested that if he can survive until 2020, which will be 11 years from his diagnosis, he would like to celebrate, along with other long-term survivors, for a social weekend at an island in the Caribbean.  I think it's a great idea, so I responded to his blog.  After my response, he thought maybe we could move this up to next year.  Here is his response on his blog:  Tropical get together.  I think this would be really fun.  I hope we can make it happen.

 The annual ASCO conference is now ongoing in Chicago.  The most exciting news in anti-cancer therapy these days is the success of immunotherapies using monoclonal antibodies.  There are a lot of exciting developments with a number of cancers, but the Multiple Myeloma community is focused mostly on elotuzumab and daratumumab, both of which have shown great promise in initial clinical trials.  As the conference proceeds, I will update with any important information for us MM patients.

Remembering

Today, May 25, 2013, is the two year anniversary of my first bone marrow biopsy (BMB).  I note this because it was a particularly painful experience for me.

I had been discussing blood test results that day with my hematologist, Dr. Rabinowitz.  I was a little nervous, because the results looked a bit ominous.  Something was definitely wrong, and I was probing for answers.  He was getting annoyed with me for persistently asking what he must have assumed were stupid questions.  In retrospect, I am questioning the wisdom of taking a confrontational stance with him just before allowing him to plunge a large needle into my pelvis.  I don't know if there is any correlation there, but boy did that hurt!

When I started treatment at the Farber in July 2011, the first procedure I had to undergo was another BMB.  Bummer!  Needless to say,  I was more than a little trepidatious about this.   To my relief, however, the procedure, while uncomfortable, was not nearly as bad as my first experience.  I have subsequently undergone three more BMBs at the Farber, and all of them have been quite tolerable.  I no longer fear the procedure, not that I would volunteer for it, mind you.  Fortunately, as long as I stay in remission (knock on wood), I shouldn't need to undergo a BMB more than once a year.

A recent article in the Boston Globe featured a Cambridge-based company called GNS Healthcare, which is pioneering the use of "Big Data" analytics to healthcare.  This involves using enormous computer power to crunch troves of information on patients, diseases, and medical outcomes collected by medical providers, insurers, and others.  Hopefully, this will eventually lead to personalized treatment for various diseases, including cancer.

GNS uses artificial intelligence algorithms developed out of chaos theory to determine what treatment made the crucial difference for each patient and what is likely to work best for the next patient.  The approach is to try to reverse engineer the mechanisms that give rise to the data to determine cause and effect relationships.  As genetic profile data becomes more available and cheaper to collect, this approach will become much more powerful by using individual genetic information at the molecular level.

What I found most interesting about the article is that GNS is working with DFCI and Mt. Sinai Medical School to build a computer model of Multiple Myeloma!  The objective is to better understand what works well for patients today, as well as develop more effective personalized MM treatments in the future.  This is exciting stuff!

For anyone interested in following up on this, the article was written by Globe correspondent, Karen Weintraub, and appeared in the Business Section of the May 15 Boston Sunday Globe.  Here is a link:  Big Data Can Personalize Healthcare

Back to the Farber

Today was my monthly visit to the Farber.  As usual, I dutifully collected my 24-hour urine sample yesterday.  Having no "official" containers on hand, I opted to use an empty half-gallon plastic milk bottle for the purpose.  The last time I did that, the blood draw nurse asked me whether I was bringing her a present of apple cider.  Very funny.  Today, however, there was no record in the computer that they were expecting me to bring in a sample.  That was interesting.  I decided to look into this further during the day.

My appointment with Dr. Richardson was for 2:00, but I had no illusions about my wait time.  I downloaded a couple of games to my iPhone (Word Jigsaw and Sudoku Killer).  I had plenty of time to play both while we waited.  There was a Chinese family in the waiting room.  I didn't get to talk to them much (their English was limited), but they had flown in from China to get treatment at the Farber for their father.  Wow!  That really puts the one-hour drive I have to get there in its proper perspective.  How fortunate am I to have DFCI almost at my doorstep.  I never complain about the traffic going in or out.  Just think if I had to come from China.

My blood test results came back pretty good.  MY WBC, HCT, and Hgb have all improved, and my red blood cell count (RBC) is 4.18, almost up to the normal range of 4.2.  Also, my platelets are up to 185, and, most importantly, my absolute neutrophil count (ANC) jumped to 1.95 from 1.65 last month, which is almost in the normal range.  The only number that concerned me is that my bilirubin jumped up to 2.1, the highest it's ever been.  A high bilirubin count could be a sign of a liver problem.  However, when I met with Muriel, she said everything looked fine and for me not to worry about it.  OK then, I won't.

I also got the radiology report back for my skeletal survey from last month.  In the summary it said, "Multiple left-sided rib fractures, given linear appearance, likely post-traumatic.  These may be related to the fall described last summer...".  Apparently I broke my left 4th through 8th ribs on my historic fall from the ladder, which might help explain why I could hardly move for about 2-3 months afterwards.  Of course now that that's healed, it's nothing to worry about now.

The blood test results were encouraging, but the most exciting news I got today was that I no longer have to provide a 24-hour urine sample every month!  I only have to do this every 3 months from now on.  Hooray!  Whoopeedoo!  This may not sound like a big deal, but I have to tell you that this urine collection thing is a real pain in the ass.  Just carrying the brown paper bag in with everybody nodding knowingly, "I know what's in there", kinda sucks.  Also, trying to remember not to pee in the toilet (or the woods for that matter) for a whole day is quite a challenge.  A partial weight has been lifted.  Hallelujah!

Still awaiting Dr. Richardson, I went for my Zometa infusion.  Just as that was finishing, Dr. Richardson arrived at 4:40 pm.  Tada!  Only 2 hours and 40 minutes late.  No surprise there.  It was really great to see him after all these months.  He assured me that he is keeping close track of my progress from Mary, his nurse, and he is always available when needed.  He thinks I'm looking great, that my numbers look fine, and he is optimistic that I will stay in remission for quite a while.  He also said not to worry about the radiology report, as it has no relevance to the MM.  No lesions or focal lucencies, which could be caused my MM, were noted.  Some of the stuff in there, like "extensive vascular calcifications" are normal for someone my age.  It's nice to no that I'm normal for an old fart.

He is also very enthusiastic about some of the recent clinical trial results, especially, pomalidomide, which should provide an even better alternative to Revlimid, should that stop working for me sometime in the future.  It was very uplifting to see him again.  Screw the long wait!  It was a good day.




 

Richardson Appointment

It's been a while since I've updated this blog.  I don't know why, except that nothing of major significance has transpired.  Gretchen is continuing her slow but steady recovery from her mishap.  She is frustrated by her obvious impairments, but it's amazing how quickly she has regained much of her function.  She still has dizziness and tires easily, but she has started back to her psychotherapy practice, which seems to be going well.

Gretchen has "graduated" from all her rehab therapies, and her only restriction now is that her neurologist has told her that she can't drive until 6 months after her craniotomy .  Shit!  That really sucks for both of us.  It's not because she is neurologically impaired.  Her OT therapist even wrote a note to Dr. Whitlock saying that she thinks Gretchen is OK to drive.  However, he said that there is a 20% chance of seizure within the first year of a craniotomy, so he doesn't want her to take a chance of its happening while she's driving.  I went online and found some sites that recommended 3 months before driving.  I think maybe we will have another confab with the doctor on this.  Gretchen is going stir crazy without having her freedom to drive, and I would feel the same way myself.  This is starting to become the major issue in both of our lives.

However, Dr. Whitlock said that the probability of a seizure reduces exponentially from the time of the operation.  OK, now I an an engineer (or at least I used to be), so that tells me that most of the risk is concentrated in the first few months after the surgery.  I used to know how to do all this stuff, but it figures that after 6 months, the probability of a seizure has dropped significantly.  (I invite all you techies out there to compute exactly what the probability is after 6 months for an exponentially declining probability density with a cumulative probability of 0.2 after one year.)  I'd do it myself but I'm tired.  Besides, it's late and it's too much work.  Maybe tomorrow.  OK, Steve and Bernie (college roommates), step up to plate here if you will. 

Tuesday, Gretchen and I are going back to the Farber for my monthly checkup and Zometa infusion.  Dr. Richardson's nurse, Mary, is on vacation, so I actually get to see Dr. Richardson for the first time in about 8 months.  Yay!  What a privilege!  My appointment is at 2:00, which means we will probably be waiting for 2 or 3 hours before we we actually see him.  I plan to bring my Kindle Fire and laptop to keep me amused during the wait.  I plan to have a few pent up questions for him since it has been a long time since our last meeting.  I have no reason to complain.  If I was really sick, I'm sure I would be seeing him every month, so it's all good.

I'm still trying to get to the gym on a regular basis.  My latest kick is to try to find some exercises that will help my golf game.  I hate the fact that I can't hit the ball very far anymore, so I talked to the personal trainer about specific exercises to help with that.  I'm on a roll now, so my golf buddies just better watch out.  I'm going to turn myself into a lean mean golfing machine.  Yeah, right.  I can fantasize, can't I?