UPDATE: DISCHARGE DAY!

I came into the stem cell transplant program on May 1st. It has been a daunting journey for Denise and me both. At 3 PM today, I am scheduled for discharge and it is now 5:30 AM and no new hiccups, so the discharge is to be expected.

Now that this phase is over, I don’t expect to do so many play by play updates here, only if there is a a major change. But I wanted to take this opportunity to look forward to what this coming home to Anacortes will mean to us.

We are tired, beyond exhaustion. Our first step is trying to get our feet back on our own ground and to create some new patterns of life. I personally will focus on exercise and trying to get off as many of the 12 new medications that I can. I know that Denise deeply desires a new routine in exercise as our downtown walking and (for her) running got old.

I am still dealing with on complication of pseudo-host-vs-graft syndrome. It was purely awful around the July 4th, but now being on mega doses of steroids, all the symptoms have resolved except for a persistent rash. We pray as I taper the steroids, that the symptoms don’t return.

I know that I’ve explained this before, but I will try to again as there will be no misunderstanding. Stem cell transplants offer someone with MM the hopes of putting them into a deep and lasting remission. The American Cancer Society still list MM has having no cure. Often it is a matter of time before it returns, although my doctor here has used the “cure” term when she has seen patients remain in remission for 30 years. To help preventing it from returning, I will have to go back on chemotherapy, at least for 2 years (or life). There are other long-term risks because I’ve had a stem cell transplant, including developing other cancers.

We don’t know how well the stem cell transplant has worked, yet. We will re-stage my cancer in two months. Our hope is that the remission will be deep. There is a chance that all of this effort, expense and suffering bought us nothing and the cancer will be the same. That would be devastating as this process has been so hard on us, that I’m not sure I would go through it again, even to save my life.

We are tired, but feel disjointed from our Anacortes friends. We have had wonderful times with our kids who live in Seattle, but have only seen our Anacortes friends, Jerry and the Holtgeerts since May 1st.

We are open to visitors and desire them as we seek to reconnect, however, visits will have to be limited in time (no dinner parties) until we get on our feet.

I have an extremely limited immune system right now, from both the stem cell transplant and high doses of steroids.  I cannot receive any visitor who is ill (even with a cold) for at least six months. While I can have limited time out in public, I cannot attend meetings (including church) until at least December.

I am hoping to return to my 5 miles per day hikes (but with trees rather than buildings) and would always appreciate a walking buddy. Denise is going to work to find her new normal and I want to take as much of the burden off of her as I can.

I had to park my small sail boat for the summer, but if anyone ever needs a deck hand, I might have the strength to manage a line or two. I miss sailing.

Thank you so much for making this arduous journey with us. If things go really well, they will consider me “back to normal” by next June.

Mike and Denise

 

 

13 thoughts on “UPDATE: DISCHARGE DAY!

  1. What. A. Journey. I know there will likely be new challenges to navigate along the way but I’m so happy for you, for the progress you’ve made, and for the delight of returning to your home and your life there. Our prayers will continue…

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  2. So good to hear. Thanks too for sharing as you have, I know I for one have really appreciated it. It really helped to know how you are doing through this horrible process but, also for the education and a greater understanding of the disease and impact it has. I look forward to seeing you working again one day and sharing a coffee with you

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  3. Wonderful news Mike! I am so happy for you and your family! Sending many prayers that your next transition goes smoothly and that you are able to enjoy the natural beauty of Anacortes.

    Sincerely,
    Elizabeth Linderman

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  4. Welcome (almost) home, Mike and Denise! We have awaited the day you would return.

    It sounds like the SOP for the next weeks is to rest, rest, rest and find your new normal. When you have rested, Reid and I would love to pop over for a visit (and Denise I will bring the automatic vacuum Rumba that we talked about.)

    You two are amazing. Now time for you both to come home and heal.

    Blessings.

    Ann Ann Hutchinson Meyers Annmeyers@gmail.com 210-213-0320

    “The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.”

    Ralph Waldo Emerson

    >

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  5. Praise God you are going home today!!! I’m sure there will be one excited pup waiting for you..assuming she doesn’t pose any risks for your health? I will look forward to no news as that means things are going fairly smooth and you are enjoying HOME with all of those you love. I wish you all the happiness & health Mike. I am truly happy for all of these milestones you’ve conquered so far. If you get the chance to update in a couple of months after the re-staging that would be great. Enjoy your walks and our amazing nature.

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  6. Hallelujah !!! I wish this email could adequately express the joy and happiness that I’m feeling for you and Denise. Congratulations! I will continue to pray for a long remission and peace in your future. WELCOME HOME!!!!!!!

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  7. Mike,
    Count me in as an available walking buddy.
    5 miles a day is my goal also.

    Karen and I will be looking forward to getting together with you and Denise as soon you feel up to it.
    Curt

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  8. So glad to hear you are at the stage of heading home, reconnecting with friends and seeing a new, more rural routine. Best of luck in everything.
    I’m not likely to get up that way but would be happy to chat on the phone if you are ever needing a friend or professional chit chat. Give me a call when/if it works for you!
    All the best,
    Kristi

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  9. This is great news, Mike! Thanks for keeping us updated on your progress. I pray that you and Denise can get some rest.

    Deb

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