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Monday, February 25, 2013

Near Tragedy

On Friday, I composed a new post discussing my latest lab results, my lunch with fellow MM patient Mike, the recent FDA approval of pomalidomide, and my forthcoming golf vacation.  I was about to publish it, but then decided to hold off for a while and come back later to edit it.  However, as the saying goes, life is what happens when you are busy making other plans. 

Gretchen and I were both a bit stressed because our realtor had scheduled a showing for the next day, and the house was a mess.  A painter had been there all day, and I was leaving for golf first thing in the morning.  So much to do!   About 5:00 pm I was in the basement putting paint cans away when I heard Gretchen coming down the stairs.  Then I heard her fall.  I rushed to her as she landed motionless on the concrete at the bottom of the stairs, her right face pressed to the floor.  I shouted her name repeatedly, but she was unresponsive.  I immediately called 911.  I was consumed with fear.  After a couple of minutes, she began to move...the longest couple of minutes of my life.

When the EMTs arrived, she came around and it seemed like maybe she was OK, but over her protestations, we insisted that the ambulance take her to Anna Jaques hospital in Newburyport for observation.  There, a CT scan revealed the bad news:  she had an epidural hematoma, an arterial hemorrhage in the brain.  To make things worse, the scan showed a midline shift of the brain, indicating a rather traumatic accumulation of blood compressing her brain, not to mention some skull fractures.  That's when they called for a helicopter to get her to a neurosurgeon in Boston ASAP.  This was now a race against time to save her life!  An excruciating hour later, the Life Flight chopper finally arrived, and they whisked her off to Beth Israel Hospital.
Gretchen boarding helicopter

I tried not to think the worst as I drove to Boston.  I tried desperately to cling to hope.  By then, I had read up a little on the Internet about this, and it was not very reassuring, especially the midline shift part.  I had to inform the family.  I most dreaded the call to Holly in San Francisco, as I knew how devastated she would be.  The family gathering began, and we set up a vigil in the OR waiting room. Gretchen had been whisked immediately to surgery upon her arrival around 8:00.  The hours ticked away excruciatingly until finally, at midnight, Dr. Alterman, the neurosurgeon, came in to report that she was out of OR and that he had been able to mostly stop the bleeding.  He had to remove a large part of her right skull to remove the clot.  Because of the fracture, it broke apart and he had to replace it in two pieces.  Yikes!

The next 8 hours were fraught with worry and uncertainty as Gretchen struggled to recover.  We watched anxiously in the SICU as they checked her responsiveness through the night.  She had limited movement on her left side, due to her right brain trauma, but by morning, responsiveness had returned, to the glee of the nurses and us.  They finally took her breathing tube out which had kept her from speaking, and one of her first comments was, "I hated that fucking thing".  That's when I really felt optimistic about her recovery.  Yes, Gretchen was back.

To make a long story short, she is now out of the SICU into a step-down unit, preparing to come home in a few days.  Hopefully, she will fully recover.  It was a whisker close call.  Dr. Alterman told me this morning that she almost died.  Only today did I discover that he is the Chief of Neurosurgery at Beth Israel and a world renowned neurosurgeon.  How fortunate that he happened to be there that night and that she was able to get there in time for him to save my wife's life!

It's been a hell of a couple of days, but tonight I relaxed and shared Chinese food with Holly and her boyfriend, Ryan.  I take some solace from the message in my fortune cookie, which said, "Don't panic".  I guess that means it's going to turn out all right.  All I can say is, "Wow"!

Monday, February 18, 2013

The New Normal

Multiple Myeloma, as with any cancer, changes ones life.  Things are never going to be what they used to be.  One soon learns to adapt to the "new normal".  As a small instance, today I am collecting my 24-hour urine sample for tomorrow's visit to the Farber.  So far, I have avoided the mistakes of last month, and I have remembered to collect every piss sample so far.  However, I forgot to get a collection bottle on my last visit to DFCI, so I washed out a half-gallon plastic milk bottle to serve as a substitute.  So far, so good.  Yes, this is the new normal.  But believe me, I'm not complaining, just reporting.

I read some good news on Pat Killingsworth's blog the other day.  Recent results have confirmed that Velcade has a very good response rate as induction therapy for those with high-risk MM (such as my t(4;14)), and it works well as a maintenance therapy.  Since MLN9708 is quite similar to Velcade and I also had Velcade as part of my consolidation therapy, that's pretty good news.  They say the jury is still out on Revlimid maintenance therapy, but previous studies that I have looked at over the past year or so seem to validate Revlimid as a good option for maintenance as well.  I don't know for sure, but I may have just been lucky enough to hit a "sweet spot" in my therapy for my particular risk profile at the right time.  I can only hope so.

I'm still going to the gym 3-4 times a week.  Usually, Gretchen gets up early and prods me to get up and go.  Today, she was sleeping in, so I got up and encouraged her to go.  We both did.  I'm taking that as a good sign that we can team up to keep us both going when one of us is ambivalent.

Friday, February 15, 2013

Skin Biopsy

Today I received a letter from my dermatologist, Dr. Reohr, explaining the biopsy results for the scraping sample she recently took from my left arm.  In her words, "The pathology report shows an actinic keratosis with syringomatous proliferation."  WTF?  Now there's a mouthful!

My first thought was that the more words it takes to describe an affliction, the worse it probably is.  However, she went on to explain that this skin growth is precancerous, but if left untreated, it could eventually form a skin cancer.  She scheduled an appointment for me to go in next month to determine if more treatment is necessary.

Next, of course, I went online to find out what all this stuff means.  According to WebMD, actinic keratosis is "a premalignant warty lesion occurring on the sun-exposed skin of the face or hands in aged light-skinned persons."  Did you notice the word "aged" in there?  I put it in italics so you couldn't miss it.  Shit!  I have never had a diagnosis that specifically categorized me as aged.  Then I noticed that one of the synonyms was "senile keratosis"! So I'm both aged and senile?  My ass!  I have half a mind to...let's just leave it at that (just like my half a wit).

Further research revealed that in about 15-20% of cases, actinic keratosis can evolve into squamous cell carcinoma.  This is the second most common skin cancer, behind basal cell carcinoma.  I had one instance of squamous cell skin cancer a number of years ago, which was dealt with successfully.  Of course even if this actinic keratosis eventually progressed, it would be less serious than melanoma, but there is no reason not to deal with this expeditiously NOW.

But what about "syringomatous proliferation"?  That one was tougher to find.  I know what proliferation means, but I found that syringomas are lesions of the sweat gland ducts that occur most commonly in women, frequently on the lower eyelid.  Hmmm.  I'm having difficulty reconciling a problem with women's eyelid sweat glands that would contribute to proliferating a lesion on my left arm. The connection eludes me.  I'll have to make a note to ask this question when I meet with Dr. Reohr again next month.  (I may be too aged and senile to remember to ask unless I write it down.)

Next Tuesday, I go back to the Farber ( as I will now call it since reading the book "Emperor of All Maladies") for my monthly checkup.  I will have more to say on that book when I finish reading it.  Of course that means Monday is 24-hour urine collection day, and I'm out of bottles.  What to do, what to do?  Then on Thursday, I plan to have lunch with Mike, a fellow MM patient from New York, who will be in Boston for the day. We have met before, and I am looking forward to catching up with him and finding out how he is doing with his new therapy.  He didn't do so well on MLN9708, which is really too bad.  I hope things are looking up for him.

Saturday, February 9, 2013


Nemo, the Blizzard of 2013, has just roared through our neck of the woods.  It's still snowing, but it's tapering off, leaving about 2 feet of the white stuff on the ground.  I'm taking a break from shoveling our way out to write this.

This storm evokes memories of the infamous Blizzard of '78.  Those of us who are old enough remember where we were and what we were doing then, just as when Kennedy was shot, Armstrong stepped onto the moon, and Elvis died.

As bad as it is, this storm can't compare to the devastation and impact of the '78 blizzard.  Now, as then, the Governor has closed the roads to all traffic.  This time, everyone was prepared, but then, most people were caught by surprise.  I remember barely making it home to the bottom of our driveway before getting stuck.  I was one of the lucky ones.  Thousands of others were stranded along the roadways, stuck in their cars.  Route 128 was a disaster, with over 3,000 cars blocking travel.  After a day or so, the plows were able to carve a sinuous route through the stuck vehicles, but it took over a week to clear the roads.  And who can forget the nightly fireside chats from our then Governor Dukakis, who announced emergency bulletins from a TV studio wearing his trademarked sweater?

For me, the Blizzard of '78 is memorable for another reason.  At that time, my Aunt Helen lay dying of lung cancer in a Weymouth hospital.  I was determined to visit her, so a few days after the storm, while the roads were still closed, I set out from Reading to make my way through the obstacle course on Route 128 on my way to the hospital.  It was an unforgettable scene!  I was stopped by the police on the way, but when I explained the purpose of my mission, he relented and let me continue on my way.  Somehow I snaked my way through the immobilized vehicles and made it there.

My Aunt Helen was a delightful person.  Like her brother, my Dad, she had a ready smile, a good sense of humor, and a quick wit.  (I think I only inherited about half of their wit.)  I used to enjoy visiting her and my Uncle Ted at their cottage on Cape Cod.  She made the best stuffed quahogs.

She brightened when I entered her hospital room.  As I held her hand, she looked at me, her eyes dulled with pain, and said, "Nobody said it was supposed to be easy."  There was not much I could do, but I was glad I could be there to offer some measure of comfort.

That was the last time I saw her.  A few days later, Aunt Helen died.  I'm so glad I made the effort to see her that one last time.  Yes, the Blizzard of '78 was especially memorable for me.