Second Birthday

May 17, 2012, was the second anniversary of my stem cell transplant (my “second birthday” I’ve been told – but with two prior stem cell transplants in 2000 and another back in 1955 I think I have enough now!). As I look back at last year’s post, it strikes me that my report is the same, just more so.

I continue testicular cancer-free (2000) and leukemia-free (2010), and have no expectation of either ever returning. I take great pains with sun protection, to make sure skin cancer doesn’t become my third. I still have a little graft vs. host disease (see last year’s post for a definition), but the GVHD in my legs has almost completely abated and I now have some in my mouth that’s treated with swishing a steroid mouthwash (no, my mouth isn’t “buff”). The best news is that, although still on prednisone, it’s now a comparatively low dose, and I am continuing a slow taper that should be zero by the end of the year if all goes well.

My recovery has not been holding me back at all. I work full time and greatly enjoy my work with my wonderful clients and my very supportive law partner, Lisa Rein. I also am getting lots of good exercise, both walking and bicycling.

Yesterday I took a 30-mile ride to Redmond. On May 13, a 37-mile ride to Jack and Betty’s cabin at Lake Stevens. And, most fun, on May 6 Susan and I, while in New York City to visit Brian and Kolby, rode in the 40-mile “5 Boro Bike Ride” with Seattle friends Bonnie and Larry from the Battery, up through Central Park, Harlem, the Bronx, down the FDR along the East River, into Queens, through Brooklyn, and over the Verrazano Narrows Bridget to the finish at Staten Island. A beautiful sunny day and a great time. We were scheduled to do this ride in 2010 with friends Jim and Susan, but fate intervened.

From Staten Island, with the Verrazano Narrows Bridge we had just crossed in the background

I’m still enjoying my work on the Puget Sound Blood Center board, and have one more year before “term limits” kick in. I’m even coordinating a blood drive at Temple Beth Am on July 10, 1:00-7:00, so if you’re in the North Seattle area, please email me that you’re interested and I’ll schedule you for a time.

We look with great anticipation to Jay’s marriage to Rachel Hughes this August, and we feel so blessed to have them both in Seattle, with Jay one year away from finishing UW Law School.  We are also glad Brian and Kolby are having fun as temporary New Yorkers, but wouldn’t complain if they came back west once she completes her masters degree.

Have a happy summer!

Alan’s Health Update 5-17-2011

I had pretty much stopped doing these, but today it seemed like a good idea to make one more posting.  Today is the first anniversary of my stem cell transplant, received on May 17, 2010.  I am working regularly, feeling good, and at my one-year checkup at Seattle Cancer Care Alliance yesterday was given a good prognosis.  No sign of leukemia in my bone marrow biopsy!  So we’re all pretty happy around here.

I still have issues with Graft vs. Host Disease. For you who are out of practice reading these posts, that is the effect of my donor’s transplanted cells (the “graft”) looking around and seeing nothing but unfamiliar cells (mine – the “host”).  They want to attack these strangers, until such time as they start feeling at home and stop attacking.  In June they attacked my gut; in October to February it was my liver; now it is my skin.  It is mild, and not very uncomfortable, but does need to be treated, and today I started a new course of Prednisone for it.  Not my best friend, but I tolerated it better in the second course than the first, so I’m hoping this third course will be better.

The good news about GVHD is that it means my donated cells are also on a seek-and-destroy mission to attack any microscopic pockets of my old leukemic cells.  The bad news is that I have to remain on immune-suppressing drugs for the foreseeable future, so I need to keep vigilant about things like food-borne illnesses, catching colds, etc.  That’s kind of a drag, but in the grand scheme of things just an inconvenience.

An anticlimax was that we thought today was the day (one year after transplant) that we could find out contact information for my donor.  We learned yesterday that with international donors (you might recall that we believe my donor was from Israel) you have to wait two years.  Drat.

To celebrate today, I took my first bike ride in 14 months – 6 miles to University Village and back.  The picture here is me on my trusty, if slightly rusty, steed.  The other celebration was to write this post.  Hope everyone out there in blog-reading land is well.  And if you’re not, please use this post as a reminder that you CAN get better from some pretty scary diagnoses.

Back in the saddle one year after my transplant

Alan’s health update 1-29-2011

As with past gaps, there’s been mercifully little to report.  My liver function is back to normal and by the end of this coming week I’ll be off of Prednisone entirely.  Then after 3-4 weeks of monitoring whether any graft-versus-host disease returns I’ll be able to start tapering off of my immune-suppressing drug, Tacrolimus.

My life is very close to being back to normal.  I am working regularly and exercising. The main limitation is the immune suppression, which is keeping me off of riding flying germ incubators (airplanes).

I learned today that this is the 10th anniversary of the creation of Seattle Cancer Care Alliance, where I was treated.  If YOU want a treat, take a look at this rap that was created by two Garfield High School students (or alumni; I’m not sure) to celebrate SCCA’s anniversary:  http://www.youtube.com/watch?v=ogourHzUPOk

Alan’s health update 12-17-2010

More good news.  I had another bone marrow biopsy (~200 days after my May 17 stem cell transplant), and once again it shows no leukemia cells.  So I remain in remission.  Also my liver function is back to normal after a large round of prednisone to fight the graft vs. host disease that started attacking the liver in September.  Right now my job is to taper off of the prednisone (this time I started at 90 mg and am now down to 20 mg), and then I can start tapering off of my  main immune system-suppressing drug, called Tacrolimus.

Once I get tapered off of that I can start doing normal-people things again like flying on airplanes (currently known to me as flying incubators), being in large groups without a face mask, eating foods without taking precautions (more than people with normal immune systems do) against food-borne illnesses, etc.

Meanwhile I feel good, I am working regularly (since I work at home I’m safe from the workplace transmission of colds and flu), driving myself, and walking regularly and doing physical therapy daily to build up my muscles that have been eaten up by the prednisone.

Thanks to everyone who has been keeping track of me.  And you all might enjoy this story from the NY Times about a football player who missed an important game so that he could give a life-saving stem cell transplant to a 59-year-old total stranger.  I needed a Kleenex:  http://www.nytimes.com/2010/12/16/sports/ncaafootball/16donor.html?_r=1&emc=eta1

Alan’s health update 11-25-2010

Happy Thanksgiving!  I have had many inquiries into my lack of posts, so I am posting now for two reasons.  One to just bring you up to date and the other to say thank you.  It has now been 6 months since my stem cell transplant on May 17, and despite some bumps along the road I can say that I never expected when I first got diagnosed 11 months ago that my treatment would have gone so smoothly.  My leukemia remains in remission, as it has been since the transplant. 

The “bumps” relate to mild chronic graft vs. host disease, where my donated cells are attacking parts of my body while they get used to the fact that they now belong to the same body.  Originally my battle was in my gut, and an extremely high dosage of Prednisone in June and July successfully fought that off.  Next in mid-September came signs of liver damage revealed by blood tests, an ultrasound and finally a liver biopsy on Nov. 3.  These determined that the problem was again GVHD, and I returned to a new dosage of Prednisone three weeks ago.  I will again taper off this slowly, as my liver numbers return to the normal range and no further flareups occur.  The only negative in the Prednisone is the return of the muscle-wasting effect that I experienced in the summer.  But although my legs have again weakened, I can still get up and down steps slowly, and can still cover 2-3 miles by foot several times a week, with help of my trusty REI trekking poles.

I am back driving, and also back working, about 1/3 time.  My immune system is still suppressed, so I can’t be in large groups without at least a high-filtering mask on, and planes are still out of the question (we’ve already cancelled two planned vacations for this winter).

It is Thanksgiving morning and I have so much to be thankful for.  My health, which improves.  My family, whose love and support has sustained me.  Not just Susan, Brian, Jay and their girlfriends Kolby and Rachel, but Susan’s parents, siblings and nephews; my siblings, nieces, nephews and parents; and so many members of the extended family on both sides.  I can’t thank enough friends from our Temple including our rabbis; friends and colleagues in my legal practice, especially Lisa Rein; the Goldsteins, Bonnie Berk, Goldbaum-Ungers, Klinghoffers, Kuders, Applegates, Shikiars, Appelbaums, Bergsons, the VR gang, the GHS gang, my fellow Puget Sound Blood Center board and staff members, and many others whose names should be listed here.

Lastly, thanks to the doctors, nurses and other medical professionals at Seattle Cancer Care Alliance and Group Health who have given their time and expertise to me unstintingly. They are life savers in every sense of the expression.

The family looking its best!

Alan’s health update 10-12-2010

Things have been pretty quiet here on this site, since I’m just slowly building my muscles back up, and there’s very little medical news to report.  That’s a good thing.  I’ve been walking in the neighborhood every day, and recently walked 3 miles in one stretch using trekking poles for balance and support.  I’ve also begun driving short distances, which is liberating, but I admit I’ll miss all of the visits with friends and family who were kind enough to chauffeur me about town during the past several months (you know who you are; thank you!).

Another bit of progress is that I’m starting to work a little bit. I am very thankful for my law partner Lisa who has carried the workload for so many months. It’s about time I give her a hand.

I’m fortunate that I work at home, since the main thing that has been delayed is the return of my immune system.  In early September I started tapering off the immune-suppressing drug Tacrolimus, which protects against chronic Graft-Versus-Host Disease.  GVHD is where the donor’s cells are fighting my body’s (the “host’s”) existing cells.  This can manifest itself in various ways.

My GVHD has been in the form of dry, patchy skin on my face, dry eyes, and an elevation of the numbers that measure liver dysfunction.  Primarily because of the liver involvement, my taper was ended just a few weeks after it started and now I’m back on my original dosage of Tacrolimus.  Unfortunately this delays my ability to get off the drug for an undetermined period of time.  As long as I’m on Tacrolimus it would be risky to be in large crowds (especially during flu season) or riding in an airplane.  So certain aspects of my life will have to remain on hold for the time being, like visiting my parents in Virginia and vacationing with the Hatlens in Mexico.  That’s disappointing, but on the whole I’m just so thankful to be doing so well that I’m willing to postpone those things.

Thanks for all of your good wishes and support.  It has meant the world to me and Susan!

A quick getaway to Whidbey Island last week-here we're at Ebey's Landing

Alan’s health update 8-25-2010

Today is a milestone day for me, the 100th day since my stem-cell transplant and also the day I get discharged by Seattle Cancer Care Alliance back to my “home” oncologist at Group Health, Dr. Eric Feldman.   Susan and I feel like we’re letting go of our security blanket by leaving SCCA, but we have lots of confidence in Dr. Feldman, who has managed my care since my prior bout with cancer 10 years ago.

Yesterday we got excellent news from my attending physician.  He admitted that since both of my recent bone marrow biopsies showed no disease (using the best testing techniques currently known to science), my prognosis for a permanent remission is very good.  No guarantees, but we’re very hopeful.  I’m still at risk for episodes of chronic graft-versus-host disease, and my immune system will remain impaired for another 4 to 10 months, but those risks pale in comparison with the prospect of leukemia.

I continue to walk regularly (using trekking poles for balance) and do physical therapy exercises to rebuild my muscles, particularly in my pipe-cleaner-like legs.  Susan and I even went on our first out-of-town getaway in several months, spending a couple of gorgeous days at the Paradise Inn at Mt. Rainier.

Thanks again to all of you who have been part of our support network during these difficult months, and who continue to help out by sending encouraging emails and cards, offering rides, walks, and occasional meals now that Susan is back at work.  You all have been an integral part of my recovery, and I appreciate that more than you’ll ever know.

There are still mountains to climb!