The Long Wait

 

The wait seems endless.  The stem cell therapy is almost within reach.  The bone marrow aspiration took place in late August.  Three months, I was told.  It would take three months for the marrow to be sliced and diced, done, undone and redone, reamed, steamed and dry-cleaned.  Do you get the idea I do not understand the process?

I am going in today for PT and to give them forty-two more vials of blood.  I expect the lab technician to wear a black cape and flash his  long, sharp teeth.  This is maybe my fourth bloodletting.  The process is mysterious.  I do have faith in the men and women hard at work in the lab.  I wish I had as much faith in outcomes as in people.

The infusions of millions of neural stem cells will be repeated a number of times, and it will take at least five months to see any evidence of change.  My neurologist is such an optimist about this bold experiment.  It has been a long time coming.  I am agnostic on the whole thing.  I do not know what to think.  The possibilities are so huge, my certainty about where to go from there so small.

Journalists must make lousy patients.  We elevate skepticism to an art form.  That is why I chuckle at the prospect that I will succumb to the placebo effect.  I will not be overcome by hope, which I cannot even locate most of the time.

I get wonderful, supportive comments from MSniks on this blog.  They express hope for me and for themselves.  I want to hold them close to see if it is contagious.  I do want to believe.  Hope is a place I have seen from afar.  I would like to visit there someday.

The first stem cell infusion is set for late February.  Then a new waiting game begins.

 

32 Responses to The Long Wait

  1. john January 17, 2014 at 2:47 pm #

    Hello Richard,

    I also have MS (dx’d on 12/98), am a patient at IMSMP and Dr Sadiq (since 4/2006) and am in the same trial you are in! You are ahead of me in the process (as I haven’t had the aspiration yet – it’s scheduled for 8/22/14)!
    Would appreciate hearing your progress and that is a reason I am connecting with you!

    I also am interested in hearing about how you deal with your MS? I just had to retire in Feb of this year from NYC (Department of Finance – Commissioner of Property and Chief of Staff in the Sheriff’s Office were 2 of my positions over 26 years).

    I understand what you’ve written so far (intimately unfortunately)! I’ve been in this game for less than 1/2 of the time you’ve been in it! I’d love to talk to you about your experiences!

    • Richard M. Cohen January 18, 2014 at 10:13 am #

      Ask Carmen for my email.

    • Terri Weiss January 23, 2014 at 12:21 pm #

      John and Richard,

      I’m in the same trial with Dr Sadiq. Adoration and forty-two vials of blood were taken from me in mid-December. I haven’t heard yet about when the injections will begin, but my next regular appointment is in March (so maybe then?).

      I posted here once before – let me know if either/both of you would like to talk, because I sure would like to compare our experiences as we move along this path.

      Richard, I’m pissed too, btw – have been for years. My anger has tempered a bit as my forced ‘retirement’ from active legal practice has started to transition into another career, but only a bit. I try direct my rage toward how to make my life better, instead of accepting the damn disease (never done that, or called it ‘mine’ because it’s not – I don’t own it and I sure as hell don’t want it).

      Anyway, either or both of you, please let me know if you want to communicate…

      • Terri Weiss January 23, 2014 at 12:22 pm #

        *aspiration* don’t you love autocorrect?!

      • Richard M. Cohen January 24, 2014 at 8:54 pm #

        Sure. Get my email address from Carmen.

  2. Kelly January 17, 2014 at 9:12 pm #

    Forgive me for being cliché but I am going to go with the phrase “Good things come to those who wait” or something like that. I am hopeful for the success of this trial as the prospect of a stem cell transplant one day is all I have. Hope is something that I am extremely lacking on this particular day. For the first time I expressed that lack of any expectation to my mother. My mother of all people who beat breast cancer and leukemia (two stem cell transplants saved her life). The woman who has not left my father’s side while he slowly dies from Stage four prostate cancer that has spread to the bones. As I sit here now I feel like a selfish idiot. I am tired of cancer hurting my loved ones and me, as I had my own battle, and then the diagnosis of MS to round out the circle . At least with cancer there was the idea that I could beat the disease. I did beat it after radical surgery and chemotherapy. Cancer was my nemesis. It took away my dream of having children and I had to readjust my dreams. I took on the fight with so much fervor. There were times before chemo that I would chant old cheers that I said in high school when I was a cheerleader. Go, Fight, Win! Where is my fight now? MS just looks like a journey into a dark abyss. The whole MS cocktail of medicines available is not very conducive to someone who has had cancer. My body makes antibodies to everything else. The whole approach to treatment is so backwards in my thinking. So I am going to summon the last vestige of hope in my body and root for this thing you are doing to be a game changer.
    Sincerely,
    Kelly

    • Richard M. Cohen January 18, 2014 at 10:22 am #

      Kelly-

      After decades of MS and two bouts of colon cancer, `I learned life is not fair. Nowhere to go from there. I am third generation in my family with MS. I worry for my kids. A lot. We all have our stories but are in this together. We all have a stake in this trial. Hope is hard, but maybe help is on the way.

      Peace,
      R.

  3. Carla January 18, 2014 at 3:39 am #

    As I lay here defenseless against this monster of a disease that continuously erodes away my being, I wait with you….I wait with you…I wait with you…

    • Richard M. Cohen January 18, 2014 at 10:24 am #

      And I am with you. Stakes are high for all of us. I wish you the best.

      Peace,
      R.

  4. TON January 18, 2014 at 10:37 am #

    Queridos amigos que no conozco,

    disculpen que escriba en mi lengua madre pero siento que es la mejor forma que tengo para expresar mis sentimientos de angustia y esperanza que permanentemente habitan en mí (creo que gana la esperanza).

    Ambos sentimientos se han engarzado en mi interior dando lugar a la obstinación de mantenerme vivo y seguir luchando, buscando en este padecimiento la virtud, como dice Verdi en Va pensiero.

    Ojalá puede llegar a ustedes para unirme a esa energía vital que tan bien expresan.

    Vienen a mí ahora, como de lejos y sin permiso o explicación estos versos del poema Cantares de Antonio machado que interpreta Serrat:

    Cuando el jilguero no puede cantar.
    Cuando el poeta es un peregrino,
    cuando de nada nos sirve rezar.
    “Caminante no hay camino,
    se hace camino al andar…”
    Golpe a golpe, verso a verso.

    Un abrazo del alma y fuerza compañeros!

    TON

    • Richard M. Cohen January 18, 2014 at 2:11 pm #

      Huh? I barely speak English.

      R.

  5. M Savarase January 20, 2014 at 8:00 pm #

    Best to you. Our strength is heightened by yours.

    • Richard M. Cohen January 22, 2014 at 9:30 am #

      I think we all help each other.

      Peace,
      Richard

  6. jaime1010 January 20, 2014 at 8:03 pm #

    I have a lot of respect for what you are doing and just Tweeted you. I was dx’ed 04/11 at 31-y-o, totally healthy. I just was wondering where I can get more info about being in a trial in NY…. I am at the end of my rope here….

    thanks

    Jaime L Smith

    • Richard M. Cohen January 21, 2014 at 8:19 am #

      Sorry to say you probably have to wait for Phase Two trial. Could be years away. Why? Analyzing first trial and raising big money.

      Peace,
      R.

  7. M.J. January 20, 2014 at 9:13 pm #

    Am praying that this will work! All these years of research and dashed hopes. My husband has PPMS, and sometimes seems like nothing is being done and you tend to lose hope and just focus on trying to keep at the level you are, rather than continuing the downhill slide. Have immense admiration for you and the struggles you have endured and continue to face. Will look forward to hearing how it goes for you and hope that they will finally have something that makes a difference. Best of luck!

    • Richard M. Cohen January 21, 2014 at 8:23 am #

      This is a shared struggle, especially for progressive. My heart goes out to you and your husband. If I know victory, I so

  8. Nicole January 21, 2014 at 12:04 am #

    Mr. Cohen, You got this!!!!

    • Richard M. Cohen January 21, 2014 at 8:24 am #

      GOT WHAT?

  9. Amy Corcoran-Hunt January 21, 2014 at 10:30 am #

    Known of you for some time, of course, but just found your blog. Progressive MS threw me in a wheelchair in about 4 years. Ugly, mean, fast. I was quite an amazing person, now with a smaller, pinched life. Here’s to stem cells! Good luck and thank you, hope is very hard to have but I have it still.

    • Richard M. Cohen January 22, 2014 at 9:33 am #

      Stem cell therapy is the future. Close to now. I am only a surrogate for others. Hope.

      Peace,
      R.

  10. Brooke Slick January 21, 2014 at 12:32 pm #

    Good afternoon, Mr. Cohen!! My name is Brooke Slick and I have RRMS which was on the cusp of SPMS when I had a hematapoietic stem cell transplant (HSCT) done in Moscow, Russia, in May of 2013 (see my blog at the website address listed above). I, along with at least 11 other Americans, have ventured there since October of 2012. We had our stem cells collected, as you did, but ours were extracted through apheresis (from the blood), then we each received four days of high-dose Cyclophosphamide (Cytoxan) in doses that were adequate enough to killing the t-cells wherein the MS resides. Our stored (frozen) stem cells were then returned to our bodies, we engrafted, and our immune system was reset to halt our MS activity and progression. Yes, this same treatment is offered at Northwestern in Chicago, but, we did not qualify. As you know, trials have strict criteria for acceptance. The immune system was not reset due to the stem cells. They only act as the conduit to quicker recovery of the immune system. It is the chemo, alone that halts the MS. Now that our MS has been placed in permant remission, many of us are now considering MSC treatment, much like the one you are having to repair the damage that we have incurred. I, as well as many others within the MS/stem arena are scratching our heads and wondering why you wouldn’t have had your MS halted first and then had the treatment that your are having now, to repair myelin damage. Will you need to be reinjected with your re-engineered stem cells throughout the rest of your life so as to repair future MS damage? I was prompted to send this message after once again seeing this treatment featured on a CBS newscast last evening. I will end by saying that I appreciate you not sugar-coating MS in your blog. You have every right to be angry and frustrated. Thank you for saying it out loud!! 🙂 Brooke

    • Richard M. Cohen January 22, 2014 at 9:38 am #

      Brooke-

      I am making it up as I go along. I know less about MS than you may think. Am taking it a bit at a time.

      Best,
      R.

  11. Laurie January 21, 2014 at 9:48 pm #

    Hi Richard,

    Watching you and Meredith on CNN. I am so excited about stem cell research. I hope it will continue what anyone’s political or religious beliefs are. Thanks to both of you for being so candid and honest. May I ask you a personal question? Do you ever get over the fear or a recurrence of cancer? So far I have not. People who have not had it don’t understand.

    • Richard M. Cohen January 22, 2014 at 9:43 am #

      Laurie-

      I do not even think about cancer- part being ten years out and part denial. I am good at that. I don’t want to make myself crazier than I already am.

      R.

  12. Dawn January 21, 2014 at 10:23 pm #

    Just watched you and your wife on CNN with Piers Morgan. My long time best friend from childhoods brother has MS. I have watched as he has lost much over the years.
    I also seen the how his heart has humbled and grown even more than it ever was.
    I was glued to the TV listening to every word you had to say. I felt your beautiful soul.
    I admire your honesty. You are inspiring to all , not just people with MS. It is refreshing to
    hear the good and bad the you speak and write about.
    I will continue to read your blog. I wish you peace and that you are part of something positive in the treatment of this disease. I have no doubt that you will continue to help many.

    • Richard M. Cohen January 22, 2014 at 9:46 am #

      Dawn-

      Thank you. People like you keep me going.

      Peace,
      ]R.

  13. Monica January 22, 2014 at 3:50 pm #

    You think journalists are lousy patients? Try being a scientist! We make skepticism into a science, or at least I do! I call myself ” the hopeful pessimist” but the truth is hope is really hard to hold to onto especially when you’re fighting your own body… I have SPMS (the ” bad kind of SPMS” as my Dr. Puts it)
    My legs don’t work, my arms and hands are weak and tell the truth, the only thing that keeps me fighting some days is the notion that the ones I love deserve better
    Sorry this ended up coming out more depressed then I wanted it to. Thank you for your blog, for your inspirational words and for taking us along on this journey!
    All the best,
    Monica

    • Richard M. Cohen January 24, 2014 at 8:58 pm #

      Sure. Get my email address from Carmen.

  14. Tracy Olson January 23, 2014 at 4:16 pm #

    I am a pt who has SPMS…have had it since college. Was DX in 1989. I see dr in Boston. I tried to get it to a autologous Stem cell tx at Northwestern with Dr Richard Burt but my EDSS is 6.5 and the wouldn’t take me. Nobody in Boston with even consider this TX but I want to do it.

    • Richard M. Cohen January 24, 2014 at 9:00 pm #

      Burt wanted no part of me either. Please hold on. The stem cell patrol is on the way. We are only at the start.

      R.

    • spiro spyratos February 1, 2014 at 1:55 pm #

      Actually, I tried with Burt too. They are calling BMT a failure for SPMS (I know, more good news) so they are going for aggressive refractory RRMS only for bone marrow transplant treatment. I was angry at this decision three years ago because I was still RRMS. What does “aggressive” mean? It’s the closest thing to a cure so you don’t have to worry about prospecting stem cells, remyelination strategies (see the Myelin Repair Foundation), etc. or $50k a year medications which only “slow” the disease, big deal. BMT would reset your immune system and bingo, you’re done. Now, we have to wait 5 to ten years while in SPMS mode to hope for reversal of symptoms. The real question is (and if you can ask Dr. Sidiq as he is not my neurologist Richard) will stem cells or remyelination help those with SPMS? The reason I ask is because axons are lost in SPMS, hence why disease modifying drugs are not effective, nor remyelination strategies. I don’t mean to sound hopeless, but we need research into regrowing axons/neurons.