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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.




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. 










Wednesday, August 27, 2014

Update

My apologies for taking so long to update this blog.  My excuse is that a lot has been happening lately.  Along with our (so far unsuccessful) search for a new house, we have had the pleasure of being fully occupied by family visits for the past couple of weeks.

Lobster, oyster, and steamer dinner
First, Brian, Pam and Logan came up from New Jersey on August 13 and stayed through the weekend.  Then Holly and Ryan came in from San Francisco and arrived here that Sunday.  Holly and Ryan stayed all last week, while Brian, Pam, and Logan came back again this past weekend.  Jeff and Christine were here often during that time, so it was quite a family get together.  On Sunday we had a lobster feast, with oysters on the half shell and steamers.  Yummy!  Sadly, Ryan had to go back Monday, Brian and Pam are headed back today, and Holly leaves tomorrow.

During their visit, we used the boat often, making three trips down the Merrimack to Newburyport.  Monday was a great day!  After a boat ride to Newburyport for lunch, we got out the kayaks, went swimming in the river (present company excepted), and did knee boarding until it got dark.  Brian, Christine, Jeff, and Holly all tried it and did well, but Holly was the star performer, getting up on her knees on the board like a pro.  I just tried to steer the boat and keep from hitting anything.

We are making the most of our last summer here.  Damn, I'm going to miss this place.

Yesterday, I drove Gretchen to the orthopaedist to check on her foot.  The X-rays showed it is healing nicely!  The doctor said she should continue to use the boot for next 7-10 days and then go to gym shoes and walk on it carefully.  She goes back again in 3 weeks.  Hopefully, she will be able to return to mostly normal activities by then.


For the past couple of years, I have been communicating with a fellow MM patient from Buffalo, Steve, whom I met through my blog.  Gretchen and I had lunch with him in Buffalo when we went to Niagara Falls.  He was in Boston yesterday for a consultation with Dr. Richardson about joining a clinical trial using the experimental drug, ibrutinib, along with dexamethasone.  Ibrutinib was recently approved by the FDA for treating leukemia, and they are now cross testing it for MM.  Paul Richardson is coordinating the Phase II clinical trial at the Farber (Protocol PCYC-1111-CA).  Fortunately,  Steve was accepted into the trial.  We met in Boston for lunch after his appointment and had a delightful visit.  Steve is a very bright fellow who has done extensive research on MM and has taken an active role in his treatment.  He has often gone down unorthodox paths for his own treatment, and so far, it has served him well.  It has been seven years since his diagnosis, so he must be doing something right!  I expect we will see each other more often in the coming months, since he will be making frequent trips to the Farber for this trial.

I'm still feeling good.  I go back to the Farber on Tuesday for my monthly checkup and Zometa infusion.  I'm looking forward to reducing the frequency of these infusions to once every two to three months.  We'll see.


Monday, August 4, 2014

Taste of tomato

I had my monthly visit to the Farber today and thankfully, all is still well.  I'm very grateful as I enter my third year of maintenance therapy on this clinical trial.  Except for continued improvement of my hematocrit from the iron pills I'm taking, there is not much new to report, so instead of dwelling on that, I want to talk about tomatoes.

The other day, I read an article on CNN about "the best sandwich in the universe".  The author was touting a tomato and mayonnaise sandwich on white bread as being the perfect sandwich.  Here is a link to the article:  tomato-mayo-sandwich-eatocracy.  Now I love both tomatoes and mayonnaise, and fresh tomatoes have just come into season in this area.  I decided to take the plunge.  I bought a loaf of regular white bread (ugh!) and bought some fresh tomatoes from the local farm stand.  I slavered up the Hellman's mayo and sliced tomatoes on the bread, let it soak in for a minute, and took a bite.  I have to say it was pretty good.  However, Nirvana it wasn't.

That made me think about when a tomato was Nirvana for me.  I was probably 12 or 13 years old, standing in the vegetable garden of my grandmother's farm in upstate New York.  I distinctly remember plucking a large ripe tomato off the vine and standing there devouring it, with the succulent juice and seeds running down my face and dripping on the ground.  That was the best tomato I have ever eaten!  Some of that has to do with the fact that my taste buds have deteriorated over the years.  Some of it may also have to do with the glorification of that memory as the years have past.  In any event, my mind still recalls exactly how delicious that one tomato was.  I have never tasted another one as good since.

The same goes for corn on the cob.  I love fresh corn on the cob.  They are in season now.  Yesterday, I devoured 3 ears, and yes, they were very good.  However nothing will compare to my memory of the corn from the farm.  Again, I was young, but I clearly remember that just before dinner was served, we would go out and strip ears of corn from the stalks, rush them back to the house, shuck them quickly, and throw them into the pot of boiling water that was awaiting.  Minutes later, I recall sitting at the dinner table, voraciously stripping the cob with the sweet kernels bursting in my mouth.  In my mind, that particular flavor has yet to be replicated, no matter how delicious today's corn might be.

I think everyone probably has memories of tastes and times that are memorable and can't be repeated.  I have several other unforgettable taste memories:  My grandmother's soft raisin cookies hot out of the oven, my mother's apple pie, and the strawberries from my childhood in Pennsylvania.  The strawberry man would come down our street in season and you could hear him from half a block away shouting, "Berries!  Berries! Straww-berries!"  It was so exciting! When I could convince my mom to buy them, they were so delicious, especially with some whipped cream.  Strawberries have never tasted as good since.

I'm not complaining, mind you.  I still enjoy a good meal, even if I can't enjoy the subtleties of flavors that I used to.  I can still let my memory fill in the blanks.  Tomorrow, I might try another tomato and mayonnaise sandwich.  Maybe I can coax my memory of the perfect tomato into making it taste even better.


Monday, July 28, 2014

Stuff Happens

I haven't updated this blog for a while.  I've been a bit preoccupied lately, as Gretchen fell and broke her foot last week.  We were at a Barenaked Ladies concert in Lowell, and Gretchen was dancing with Jeff's girlfriend, Christine, when she failed to notice a step and fell.  Thank goodness she didn't hit her head this time!  She sprained her right ankle and broke her 5th metatarsal.  The concert was great, as in "Other than that, Mrs. Lincoln, how was the play?".

Anyway, she is now hobbling around with a boot and a walker, since she can't put any weight on her right foot.  I also bought her a wheelchair online (which might be hot, since it has hospital IDs and numbers to call if found).  The guy I bought it from insists it wasn't stolen, so I really want to believe him.  Once Gretchen doesn't need it any more, maybe I'll call to see if somebody wants it back.  But for now, I'm in denial.  Fortunately, she isn't in any pain now, and the swelling has gone down.  She has been icing it regularly and keeping it elevated, so I think the healing is going well.  We go back to the orthopedist again next Tuesday to see if she can start putting weight on it.  We'll see.

In the meantime, I'm getting some good lessons on how to keep things going around here.  I'm learning about where and when to put OxiClean tablets in the washer, when to use bleach or fabric softener, what not to put in the dryer (some hard lessons already learned there!), cleaning the dryer lint filter, and where the spare toilet paper is stored, to name a few.  But I think I'm catching on pretty well.  One good thing is that now that we are more or less house-bound, Gretchen is more amenable for me to cook some more meals.  Today, she suggested that I cook up a pork recipe that she found in a magazine.  It looked great, and I also found a cool recipe for a risotto (which I've never made) in the same issue.  I shopped for all the ingredients and made what I will modestly say was a fantastic meal for us!  Yum!  I may not know my way around our laundry room, but I do know my way around our kitchen. I love to cook!

Gretchen's injury also makes house hunting and packing a bit problematic.  We haven't found anything yet that meets our needs.  I mean all we want (ideally) is a small cape (2000-2500 sq. ft.) on a small lot (1/2 acre more or less), with a master bedroom and bath on the first floor, an attached 2-car garage, a wood fireplace, located on a quiet street with a private back yard.  Is that too much to ask?  Well, I think now that maybe it is.  We haven't found anything close to that yet.  I keep thinking about 6-year old Susan on "Miracle on 34th Street" who gave Santa picture of the perfect house she wanted and found out on Christmas morning that he had found it for her.  Well, it ain't Christmas, and I don't know any Santa Clauses, so this could be more difficult.

We have until the end of September to stay here at a very reasonable rent ($1,000/month).  We could extend this for another 3 months at our option, but we don't want to take advantage of the new owner.  We would really like to leave here by the end of September or shortly thereafter.

One option we are considering is to rent an apartment or house on Plum Island in Newburyport for the winter.  Then we would have a leisurely time to continue looking for the perfect home while enjoying the beach and ocean over the off season. This option is starting to sound pretty good.





Sunday, July 13, 2014

3rd Anniversary

Three years ago today, Gretchen and I sat in Dr. Richardson's office as he acknowledged that I had progressed from Smoldering Myeloma to full-fledged Multiple Myeloma.  By then, I had done enough research to know that this was serious news indeed.  At that moment, both of our lives changed forever.

I am thinking back on the feelings I had that day in Paul's office.  Was I scared?  Yes, but something about Paul's manner was very comforting and soothing.  He looked into my eyes and said confidently, "You are going to live into your eighties".  Just like that.  What might have been a traumatic experience suddenly became more one of concern and resolve.  Dr. Richardson's optimism gave me hope.  I immediately signed up for the MLN9708 clinical trial he offered me, and from that moment on, I embarked on a mission of "How am I going to beat this thing?".  It was now my job to research everything I could about MM and to participate as much as possible in my own care.

Over the past three years, I never dwelt on the question of "Why did this have to happen to me?".  Shit happens, so just deal with it!  Of course I was very fortunate to have responded so well to the therapy.  I don't know to what extent my positive attitude had to do with it, if at all.  In any case, I am blessed to celebrate this 3rd anniversary in Complete Response (CR).

In the intervening time, great strides have been made in the search to contain or cure MM.  The many new drugs available give additional hope to relapsed/refractory patients.  Recent research on monoclonal antibodies, immunization therapies, nanoparticles, gene therapy, personalized treatments, and other promising approaches have opened new frontiers in the fight against this disease.  I am fortunate to have Dr. Richardson and to be at the Dana Farber Cancer Institute, the epicenter of much of this research.

Every month as I go back to the Farber for my blood test and Zometa infusion, I have a bit of anxiety as to whether my remission continues.  I know that it is inevitable that on one of these visits, I will find that MM has reared its ugly head again.  But that could be many months or even years away, and when that happens, it will just be a new phase in the ongoing fight.  Dr. Richardson's words on that first day are ringing in my ears.  My eighties are still 9 years away.  You gave me your word, Paul, and I believe!