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Wednesday, March 30, 2016

Bone Marrow Biopsy

Monday at the Farber was the time for my annual bone marrow biopsy.  Last year, I found the procedure to be extremely uncomfortable and painful, so they suggested that this time I could take an anesthetic to supplement the lidocaine, so I agreed.  I had Gretchen come with me so that she could drive us home.  However, this note wasn't in their system ahead of time, so I didn't get any prior instructions. Unknowingly, Gretchen and I went to the cafeteria for lunch before the procedure.  That was a mistake, because the IV they were planning to use required an empty stomach.  Oops!

One of the nurses came out to explain the remaining options.  I told her that none of this would be necessary if Zack was still there.  He moved out to California about two years ago, and everyone misses him.  I never had any issues with Zack doing my biopsy.  He was great!  The nurse said, "Let me tell you something.  The nurses here were the ones who trained Zack."  I replied, "Then he was a very good student."  She had to agree.  She gave me a couple of alternative options, including some anesthetic knockout pills, but in the end, I settled for just an Ativan to relax me.  That actually worked quite well.  I was able to relax more and this time was much better than last year.  I didn't feel any after effects at all, so I even drove home.  I think I'll opt for an Ativan (or 2) again next year.

Other than that, my numbers still look good.  I'll find out in the next couple of weeks whether the bone marrow biopsy confirms a deep remission.  My fingers are crossed.

We were planning to leave for Florida tomorrow to attend Pat Killingsworth's Myeloma Survival School in Amelia Island, north of Jacksonville.  It's so sad that Pat is no longer with us and I will never get a chance to meet him.  I'm looking forward though to giving my respects to his wife, Pattie, and meeting other MM survivors while there.  However, Gretchen isn't feeling well, so we changed our reservations to Friday instead.  I hope she feels better by then.

After that, we are planning to drive down to Cape Coral, Florida to visit Steve and Sue for a few days.  We are really looking forward to that.  The weather there is supposed to be in the 80's.  Yahoo! They told us to be sure to bring our bathing suits.  That sounds good to me!

Our fundraiser for the MMRF 5K Run/Walk is still doing pretty well.  We are over $6,000 in contributions so far, but we have a long way to go to meet our fundraising goal of $10,000.  If you haven't contributed yet, please consider making a donation to Team Epic for Bill.  Here is the website:

MMRF Boston 5K Walk/Run Team Epic for Bill

Thank you in advance!


Sunday, March 20, 2016

Birthday

Today marks the fourth birthday of my stem cell transplant on March 20, 2012, when I received my brand new immune system.  I now have two birthdays, December 2 and March 20.  I share the honor of having two birthdays with Queen Elizabeth, whose actual birthday is in April but whose official birthday is in June.  How many people can say they have two birthdays?  I feel so regal.  I think Liz and I share something special.  Maybe I'll give her a call tonight just to share this.  Maybe not though...she's probably asleep and it's too late to call.  Oh well, dream on.

Seriously though, I am very pleased to have reached the four year mark after transplant and still be in remission.  I am so grateful. 

I'm healing slowly from my facial surgeries for skin cell cancer.  I'm not too happy yet with the wounds, especially on my nose, but I go in tomorrow for a followup visit.  I just don't want to be horribly scarred for life, not that I'm planning on auditioning for any movie roles.  I'm not ready to call the surgeon a butcher yet, but we'll see.  Meanwhile, I've found a new dermatologist in Newburyport that I have heard good things about.  I may try to set up an appointment with her in the next couple of months.

We are getting ready for our trip to Florida.  Visiting Amelia Island to mourn Pat Killingsworth will be an emotional trip.  I'm sure I will meet some other MM patients whom I have either met with in person or communicated with online.  I want to pay proper respects to this most amazing person, who has been a beacon of hope and light to me throughout my MM journey, as he has been to so many others.

After that, we will visit my college roommate Steve and his wife Sue for a few relaxing days in south Florida.  After all the stuff that's been going on here, I think we can use the break.

Please help us raise funds for the MMRF Boston 5K Run/Walk event on May 1.  So far, we have raised over $4,000, but we have a ways to go to meet the Team Epic for Bill fundraising goal of $10,000.  Please help us raise money for this worthy cause, which will help to give hope to all of us multiple myeloma patients.  Here is the website:
http://support.themmrf.org/site/TR/RaceforResearch/General?team_id=41495&pg=team&fr_id=2362
Thank you for your support. 




Saturday, March 12, 2016

This and That

Last week at the Farber, everything came out normal again, thank goodness.  I'm very lucky to still be in remission at cycle 45 of my maintenance therapy.  Believe me, I don't take this for granted.

We are getting ready to head to Florida at the end of March to commemorate Pat Killingsworth's death at a memorial celebration for him at Amelia Island.  I'm still not over the shock of Pat's passing, as are most of his devoted followers.  I look forward to meeting in person some of those MM survivors with whom I have been in contact over the years, as well as new friends I don't yet know.  I hope this can be both a solemn memorial and a new dedication for us to move forward in his memory to find a cure for this insidious disease that took him from us.

Afterwards, we will then drive down to Cape Coral, FL for a few days to visit my college roommate and his wife, Steve and Sue. Even though this winter has been kind to us so far, we are really looking forward to getting away to the sunny south of Florida and spending time with our good friends.

Tuesday, I had some minor surgery on my face for a couple of skin cancers:  a squamous cell carcinoma on my jaw (Mohs surgery) and a basal cell carcinoma on my nose (scrape and burn).  I now look like I've been in a street fight as I sport my bandages (I'd like to think the other guy looks worse).  I'll spare you by not showing a selfie.  Anyway, this is the price I have to pay for the indiscretions of my Irish youth by basking in the sun without using enough sunscreen.  I'm sure there's more of these to come, but I plan to keep on top of this by frequent visits to my new (as yet to be named) dermatologist.

The big thing in our lives right now is my sister-in-law, Kathy.  I've been helping her with research and in finding her the best oncologist: Dr. Temel, Clinical Director of lung cancer at Massachusetts General Hospital in Boston.  Yesterday, she finished her 3 week regimen of whole brain radiation for her metastasized lung cancer.  She has been a real trouper, and has survived this phase amazingly well, with few side effects so far.  Her hair has now fallen out, but she is sporting a new wig, and she looks and sounds as great as ever.  She starts her chemotherapy on March 22.  If anybody can beat this down, Kathy, with her amazing health, energy, and incredibly positive attitude is a good bet to do this.  In the mean time, there are a lot of new therapies being tested that might give more favorable long-term prognoses to lung cancer patients like Kathy.  Let's just hope for her to live many more years along with those of us who love her.

I'm really looking forward to the MMRF 5K Run/Walk event on May 1.  We have 19 participants signed up to run or walk.  So far, we have raised about $4,000, but that is far short of our goal of $10,000.  I invite any of you who have not yet contributed to please make a contribution to this worthy cause.  I would really appreciate it.  Here is the website which you can copy and paste into your browser:

http://support.themmrf.org/site/TR/RaceforResearch/General?team_id=41495&pg=team&fr_id=2362

I thank you in advance.

Today I went to the gym to train for this event.  I am doing interval training, some walking and some jogging, to prepare myself in case I might want to run rather than walk.  I wasn't supposed to do any exertion after my surgery on Tuesday for a full week, but I felt I could run and walk today.  I did 25 minutes of combined walk and run.  My surgeries were fine.  Unfortunately, I forgot to put on my knee wrap today.  I got through the exercise fine, but afterwards, my right knee started hurting, and I have been hobbling ever since.  Shit!  Maybe I just screwed everything by pushing too hard today.  I don't know.  I have been using this 5K run/walk as an impetus to get myself in shape.  I hope I can still do this without screwing up my knee.  We'll see.