What a long strange trip it’s been.

This will be the most difficult post to write as yet, so I’m going to try to keep it short.
The treatment for Mark’s rare blood disease did not work.

We returned to the Odette Cancer Clinic at Sunnybrook Hospital last month for a follow up bone marrow biopsy and also an emergency lymph node biopsy. He had nodes almost double in size on both sides of his neck. When the neck surgeon examined Mark’s swollen nodes he decided to perform an excision, not an aspiration as I was expecting. Right in front of me he cut Mark’s neck open and removed part of a lymph node – not the whole thing as it was too large. The doctor did not like what he took out.

After 10 agonizing days we finally got a call from Mark’s doctor at Baycrest saying she needed to talk to us right away. The results were in and it was not good. Also, the hematologist at Sunnybrook wanted to see the entire family, except for Mark, first thing the next morning. Nobody likes to receive that call.

To put it simply, the medicine did not work. The disease progressed. Mark is now diagnosed with incurable Acute Myeloid Leukemia.

The lymph node that was removed is called a chloroma, a solid leukemic tumor, which is rare. Even in a healthy man the prognosis is grim. The doctor has given him just weeks as this cancer is very aggressive. He has a new lump in his armpit now. He is slowly losing weight and his energy level is declining. He is conscious and most days he is getting out of bed and up into his wheelchair. We’ve taken him outside on the last few warm days that we’ve had. Sometimes he just feels crummy and he doesn’t know why. Mark was told of his condition and he bravely accepted it. However, because of his messed up short term memory, we’re not sure how much he has remembered and I’m not about to remind him. There is no point in asking why this has happened to him because there is no acceptable answer. We try to make each day as meaningful as possible and enjoy and appreciate his presence. He is loved and cared for and we make sure he knows it.

We’ve decided to treat him in a palliative way. There is no cure and we don’t wish for him to suffer in any way. So far he hasn’t required much in the way of pain killers. He has survived more than 3 weeks post diagnosis as of this writing. We don’t know for sure how or when the end will come, but Mark is finishing his physical journey.

We are not accepting any more visitors now, except for immediate family and the regular close friends, and those who have already made arrangements to see us. This is family time now. Thanks for understanding.

It’s a terrible thing to watch someone die. We are angry and desolate, consumed with hate for this disease. It doesn’t help that we have silently sworn to keep up appearances. Things are about to change and never be the same, and it isn’t a quick flick of fate’s wrist but a slow, wrenching turn, as if the power steering has gone out.”                                          – Carol Radziwill, “What Remains”

Advertisements

20 comments on “What a long strange trip it’s been.

  1. rrosen@bu.edu says:

    Dear Mary,.

    We love you and your family and hope that this time will pass as quickly as possibe. I will be in touch when I return to Boston as I am away.

    Most sincerely,

    RR
    Sent via BlackBerry by AT&T

  2. Jon Garland says:

    Hi Mary

    I am extremely upset about Marks condition but glad you got the news out. I have visited Mark several times in the morning before you come and I was wondering if I could go again?

    Jon Garland

  3. Charlene Watson says:

    Mary,

    You already know are our thoughts and prayers are with all of you but a reminder that if you need anything let me know.

    Love and prayers, Charlene xo

  4. Kyle Magill says:

    Thank you for sharing this sad and difficult news. Wishing Mark, you and the family peace and love.

  5. Sarah Kast says:

    Wow! So painful to hear! I really have no words!

    We are all thinking of you!

  6. Ron Schroeder says:

    Mary,

    Thanks you for creating this blog that has helped keep all of us in the loop without pestering you for information. I have found your strength and dedication to Mark throughout to be both humbling and inspirational. You are a remarkable woman and Mark could not have asked for a better person to be by his side, not only through these tough times but for most of his adult life.

    I know the grief I feel at hearing this news is nothing compared to what you and your family are going through, but know that Mark has touched many lives and a sadness touches us all right now.

  7. david moffat says:

    Mary
    My heart goes out to you all…know that you all are in my prayers and I thank you for the privilege of allowing us a small glimpse of what you are all going through with your blog… stay strong my friend…..

    david

  8. M. Silver says:

    Thanks so much David. It’s always so nice to hear from you, old friend.

  9. Lilly Nikolajevich Wisenberg says:

    Mary and family and of course mark. I was very saddened by the news that you so painfully wrote. I really have no words to adequately express my thoughts because there really are no words. I’m sorry that we’ve never met (yet because we never know what the future holds). please pass on my thoughts to Mark and how very happy I was that he attended our get together those few years ago. I wish you strength and peace for the days ahead. I appreciate being kept in the loop. All of you will be in my prayers. And once again if I can help in any way please get in touch. Lilly

  10. Warren Milando says:

    My heart breaks reading this. My thoughts and prayers are with you and the girls and of course Mark. Beyond that..I am simply at a loss for words. Thank you for finding the strength in keeping us all updated with this blog. Peace and love to you all.

  11. I am so very sorry to hear this news. It breaks my heart that Mark and your family has gone through so much.My prayers go out to you and your family.

  12. Judy Shiner says:

    Your grace and strength is amazing.
    I hope you are feeling the virtual love coming your way from the film community as we keep you, Mark and your family in our thoughts during this painful and surreal time. You are an incredible partner to an outstanding man.

  13. Bob Collings says:

    Oh, if words were a hug..if a phrase could guarantee a good night sleep..then a book I would write, but I cannot, for words are but faint and poor substitute..I pray that pain be short lived, that pain and anguish be fleeting and that memories sustain..

  14. Christy says:

    So sad to read this latest news. You have all gone through so much.
    HUGS.

Please add your comments

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s