Late December Update

I was admitted to the hospital yesterday (a different hospital due to ongoing communication issues with my gyne-oncology team) to get a jump start on treatment.

Giving into my dad’s persistence, I had a consultation with a specialist in my disease (it’s rare, so such doctors are very few worldwide) in New York City last week. Because my disease is progressing so quickly again and because I got such good results from the palliative chemotherapy I did last spring and summer, she recommended that I go back on the same regimen, though at a lower dose, which will reduce side effects. She said to just go with it until there’s evidence (with more frequent scans or by my symptoms) that it’s not working anymore or until the side effects are intolerable. That sounded quite reasonable to me, so I decided to go ahead with it.

Then I had my failed consultation with my former team at home (they don’t take so kindly to second opinions) and miraculously (thanks again, Dad) managed to switch to another doctor at another hospital (who generously came in just to see me right before leaving for his vacation). Such feats are not easy in a publicly (under) funded health care system.

Then I had a second drain of 3.7 bloody liters, with my hemoglobin count already down to 68 after two transfusions the week before. However, tests since admission show my hemoglobin count had since dropped even further to 56 (normal range is 120-160) with a CT scan showing a new crop of tumours responsible for bleeding into my abdomen. So they topped me up with three transfusions overnight to a more manageably anemic 95 count.

But there is concern that the chemo will cause further hemorrhaging and lower my blood counts dangerously. So they will keep me in the hospital until next week to monitor all that. I can’t complain about being here, though! I’ve got a private room in a new pavilion with an unobstructed northern view of very cold Montreal, all the way to the Laurentian Mountains. It’s very peaceful and the care has been remarkably kind.

So thanks, Dad, for your obstinacy, your generosity, and your love in getting me here.

And once again, please donate blood.

And thank you to all caregivers who manage kindness and cheerfulness even when tired and overworked. It makes all the difference.

About susanbriscoe

English teacher, writer
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25 Responses to Late December Update

  1. Betsy says:

    Thinking of you, Susan – and I’m glad for your wide open access to a beautiful land and skyscape.Sending some virtual iron ……..

    Liked by 2 people

  2. I guess for you it is an ever ending battle. Your positive attitude will help you a lot. Sorry you have to go through so much.

    Liked by 1 person

  3. Suze says:

    So sorry to read you are back yet again for another round, but thankful you are in a place where it is possible. So many of us don’t have that access. bless you. Off to donate again.

    Liked by 1 person

  4. janfalls says:

    Speaking of ‘kindness and cheerfulness even when tired and overworked’, seems you are finding the light even in the darkness. You are a light Susan. xoxox

    Liked by 3 people

  5. christine says:

    Wishing you no pain Susan, I am glad that you are in a nice room with a view :), thinking of you.

    Liked by 1 person

  6. ustome says:

    Thinking of you. 😊

    Liked by 1 person

  7. Dan Bohn says:

    Dear Susan,
    It’s disappointing and maddening to hear of your setbacks. Damn that cancer. I’m amazed you have the patience, capability, and attitude to post. It was around the 5th week of being hospitalized that I tired of visitors and having to repeat test results and procedures. I did enjoy and welcome stories from a guy named Dave. He basically brought the outside world into my room. I’m going to take a chance and share this unfolding sight.

    It snowed this morning and I’m watching two squirrels try to play chase, or maybe they are not playing. Maybe they are stealing food. It’s hard to tell. One gets chased then turns and leaps towards the other. Then justified retaliation commences. Attacking leaps sometimes fail and they will disappear under the snow. I swear these squirrels are really going at it. So much snow gets kicked up I will loose track, of which is which. The chaser or chased. It’s richly entertaining to see so much crazy energy in motion. After all I mean, “Hey get a grip guys. Its just nuts.”
    Dan Bohn

    Liked by 5 people

  8. Create Space says:

    You are an inspiration to me Susan! I am in awe of your determination to write and share so calmly despite such a huge struggle.
    As I think of you and how remarkable you are…
    I am drawn to the words of Victor E.Frankl in his book “Mans Search For Meaning” in which he said “…everything can be taken from a man but one thing: the last of the human freedoms – to choose one’s attitude in any given set of circumstances, to choose one’s own way”.
    Much love, Marie xx

    Liked by 6 people

  9. Pingback: From…The Death Project – Create Space

  10. curioussteph says:

    I am glad to hear that you are getting good supportive care and in a beautiful environment (if such things can be said of a hospital). At any rate, sounds the the next right step for you, and enjoy having the extra hemoglobin. They rejected me the last time I went to donate (blood pressure too low–no danger, but annoying, darn those bureaucracies). But, I have some time tomorrow and I’ll give it another try. Maybe some jumping jacks before I go in will do the trick. Best healing wishes to you!

    Liked by 1 person

  11. Linda McDowell says:

    I’m on the blood donation team when I get back to Saskatchewan, warm, sunny hugs to you Susan from Linda in Morocco. ..wink,wink…

    Liked by 1 person

  12. Thank you for sharing your experiences and doing so with such positivity. Sending you all the good wishes in the world as you continue your journey.

    Liked by 1 person

  13. Norma Foulds says:

    Keep on keeping on xx

    Liked by 1 person

  14. Susan Gillis says:

    Where I am right now in rural Ontario, the air is sparked with crystals catching the brilliant sun. Your huge and loving spirit sparks and lights like this. Your words are dancing! Sending love.

    Liked by 1 person

  15. Cate says:

    Wishing you courage, love and resilience. Thank you for sharing your experience with us.


  16. Isn’t it wonderful to have a dad like that? Glad he is there for you …….probably nagging you too but that’s love.


  17. Having just finished a round of chemotherapy myself, and hoping I never have to go through it again, my heart goes out to you. Cancer is such a horrible disease. We shouldn’t have to choose between dying from this disease or going through treatments that seriously interfere with quality of life. I’m glad, though, that chemo has been effective for you, and I pray that continues with minimal side effects. You are very brave, and this blog is amazing. Hugs to you and your husband.


  18. You are the recipient of a Liebster Award — please link up here:

    Blessings on blessings, my dear. Your sufferings have not been in vain — your words are helping so many others to walk this Path. Much love to you


  19. Shiner says:

    I gave myself a digital almost-blackout for a few weeks up close out the year, which was great, but am just now catching up on your status. I’m so glad you were able to visit with your son before this bad turn. Did you see Dr. H at MSK in New York? I visited her after my original diagnosis. You can’t do much better for ULMS, and I’m so very glad that you were able to switch up your team! Sending you love from the ULMS sisterhood. ❤️


  20. Smitha V says:

    You are a wonderfully strong, positive person. May God give you strength. It’s nice to know the place where you currently are is beautiful and the caregivers are kind. That’s so helpful. Wishing you more strength through your journey. Xoxo


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