Wednesday, December 14, 2011

Welcome to my new Myeloma Blog

Welcome to my new blog site. I have relocated the blog here primarily because support for my old site from Apple will be discontinued as soon as they move to the iCloud format. Additionally, I will be able to post to this site from any device, whereas my previous blog could only be administered from a specific Mac. That means I will be able to blog from the hospital throughout the transplant. It should also be a lot easier for readers to post comments.

The old site is still active and can be accessed at Ed's Blog - 2006 - 2011

Yesterday, I spent the day at Cedars Sinai receiving an extensive pre-treatment physical. The physical serves two purposes, 1) the insurance company requires it prior to authorizing the procedures and 2) it provides an indication that I'm healthy enough to handle the physical strain of this treatment.

And I am.

The day consisted of a rather intense series of pulmonary tests, an EKG, Echo-cardiogram, and blood and urine tests. I also met with a social worker who addressed the emotional and financial aspects of all of this and advised me how much support I will need from caregivers. Hillary attended this session along with me, which made me very happy. When it was over, the social worker commented "you're easy!"

I also met with Laura, my transplant coordinator. Laura will be the point person for all things transplant. I don't think I could have designed a better person for this job. She is quite on top of it. She actually authored the series of manuals that are given to transplant patients to prepare them for the procedures. And she is kind and empathetic and pretty and seems entirely dedicated to the people she is assigned to. So I have a guardian angel and I'm sure you will be hearing more about her as we go along.

The schedule is now nailed down and follows the format outlined in my last post (on the old blog). Next milestone will be January 12, when I will check in overnight for a heavy dose of cytoxan. This will herald the heavy chemo stage of the treatment. It will kill a lot of the nasty myeloma cells, but will also kill other rapidly producing cells, including those that grow my hair. So, it is expected that I'll be pretty smooth in about two weeks time, which just happens to correspond with my birthday.

Having had my first exposure to Cedars, I'm feeling less apprehensive and, oddly, a bit exhilarated in anticipation of this upcoming adventure.


  1. Hey Ed-
    Glad things went well. I remember my pre-SCT testing days like they were only a few months ago...WAIT! It was only a few months back!

    And speaking of back, I returned from ASH in San Diego late last night.

    No worries, good friend. With otherwise good health and an attitude like yours, there shouldn't be too many bumps in the road. Good luck! Pat

  2. I'm very proud of Hilary! It's good that she was there with you. I have the date of January 12th etched on my claender. I love you very much.

  3. Oops! That's what happens when you don't proof read. I meant calender.

  4. Hey man..I'm glad all your tests are going well and you have one heck of ah daughter!

  5. Hi Ed............Trying to post this!! Send a pic when you lose your hair. New ashion statement??


  6. Hey Ed,
    You are one tough SOB. This will go well and we have you in our thoughts.

  7. My mom above is soooo... Cute!
    She loves you more than ANYTHING!!! :-)
    Uncle Eddie,
    I am glad you got a new site which makes your blog easier to comment.
    We are thinking of you. It sure is a world of difference with family/friends supporting you. I really admire you & think the world of you. Oh, glad Ellyn got to see you as she completley adores you, but you know that!! It made her trip seeing you & spending time together!! :-)

    So I am off to FL w/Ellyn to see our mom(your sis;-), then on our special family cruise..then come back to Chicago w/Ellyn & I am off to Israel for a week. Glad I have this new I-Phone4GS to receive your blogs from anywhere now!
    Love you& know you have a guardian angel!!! Everyone seems to be so knowledgeable & incredible for you!! You deserve that & much more!!!
    Glad everything seems to be well. (as you friend stated above...i are one SOB!;-)
    Speak to you soon!
    Andrea Burns:-)-niece
    P.S. I got the special hug you gave Ellyn for me:-)LOVED it!! :-)

  8. Hang in there Ed. Looking forward to celebrating your birthday next year....Louella

  9. Ed,

    You are f***ing amazing.

    Ken and I were talking about how you endure with a cheerfulness that has to be seen to be believed.

    Be sure you either send me or post some kind of visitation schedule as to when you'll be able to have and want visitors as you go through the process.


  10. Interesting, Ed. Cytoxan wasn't a part of my pre-transplant therapy, and isn't at a number of transplant center. But I think it is a good idea. Melphalan alone didn't do it for me. I would like to see them add Cytoxan and maybe Velcade and possibly other anti-myeloma/cancer agents to your high dose therapy regimen. After all, if you are going to go to through all of this, why not try and kill more myeloma cells using different drugs?

    Your hair won't all fall out at once. A bit at a time. I chose to have mine shaved-off and get it over with while I still felt reasonably human. Sort of a symbolic right of passage...

  11. I'm, once again, impressed with your courage. You may want to add Boardwalk Empire and Homeland to your collection of series to watch

    Mark Mallinger