It was deep winter twilight, when I was finally wheeled into the surgical suite at Asheville Cardiology. I had checked in at 9 AM for pre-op and watched as the crowded waiting room of scheduled patients thinned out. At noon I was brought up to the pre-op suite.
I dosed and watched patients wheeled into surgery until I was the only remaining candidate. My surgeon, sat down to make a call from a vacant desk, a few yards from my gurney. I had just met him a few minutes earlier.
Most of the floor nursing staff and assistants had already gone off shift as we rolled past a row of empty work stations into the brightly lit operating room.
By the time I regained consciousness in the recovery room, the entire floor was in near darkness lit only by sporadic pools of ceiling lights, Wheeled out to discharge by the remaining nurse we met my cousin parked at the curb. It was night. It was over.
2019. The year could not have gotten off to a better start.
The deep cloud cover over the MPN genomic landscape was finally lifting. We had fresh views of the driving and passenger mutations from a massive work out of the UK with confirming reports in US papers presented at ASH.
Personally, it was the end of a vicious cycle of health impacts.
2017 was my year of colorectal cancer, chemo, radiation, surgery and the temporary ileostomy pouch to permit my reconstitutued bowel to heal. 2018 was the takedown, the reversal of the ileostomy and the long path back toward recovery The year ended with presentation of an MPN patient care poster at ASH in San Diego. I was clear of cancer, fully recovered.
And then came 2019. The thoroughly minor, quick swap of pacemakers in January was not a big deal. The fast breaking, game-changing revelations of MPN mutations was. These discoveries let us add mutational status to the DIPPS and DIPPS_ scales of the online Stem Cell Transplant Timing tool On the drawing board, a new graphic myelofibrosis Risk Assessment Tool (M/RAT) had been funded by the MPN Research Foundation (We had just notified the Taskforce that the project endpoint – raising patient and physician awareness of the closing window of opportunity for SCT – had reached a milestone; 16,907 unique visitors to the site (MPNtransaplant.com) made over 88,687 visits to the on-line tool and its supporting pages in the past few months.
And finally the MPN Genome Study Group, patients organized to help make mutation testing routine for MPN patients, was ready to deploy a patient survey developed by Zeta Charania.
Not so fast.
Graphic courtesy of YiddishWit.com
What I forgot was the first rule of survival. Der mensch Trakht un Got lakht. Man plans and God laughs.
By March all the joy of creation in helping piece together the mutation puzzle behind so much pain, death and sorrow in our MPN community was swept away in an instant. I was hospitalized at Duke for several deeply invasive surgeries to extract electric leads anchored in my heart via laser guided tools. A temporary single lead pacemaker was installed on my neck, A leadless pacemaker was inserted into my left ventricle via the femoral vein in my groin,.
All this carnage in March was required by the delayed and botched simple replacement of a pacemaker generator the very first week of January, 2019
Following the surgeries, yoked to a wound vacuum machine and tied to a relentless regimen of infusion, injection, pain meds and chemicals to fight infection and inflammation, I was discharged and hospitalized twice more before the end of March,
I kept trying to reenter the world, to answer emails and post a progress report. But in the end I lacked the energy, the focus to return, the simple ability to frame some kind of narrative to describe what was happening. I could not put things in the context of all the trials each of us in the MPN community were enduring. I was simply not able to string together a coherent story.
The reason for this incapacity arrived a few days ago, April 9, in the form of an echocardiogram confirmation of diagnosis. Congestive Heart Failure. An ejection rate of under 25% with severe anemia, kidney involvement. And the inability to absorb enough oxygen to think clearly, to walk without panting. To breathe without coughing,
And now, strangely, with the worst known and faced with on-going requirement to manage two serious co-morbidities and rapidly advancing end-stage aging, I can once again pick up the pieces of fallen work within the limits of my capabilities. My arms are weak but strong enough and my mind clear and spirit, this morning at least, reviving,
I believe we can finish the mutation projects together and for a time I can modestly participate in our on-line discourse. (Der mensch trakht…)
And I have another motivation to re-enter the world. In a few weeks Elijah, my grandson, will be born in Asheville, a fitting appearance at Passover, the festival of renewal and liberation, to mark the passage of generations
To all my MPN friends, colleagues, and co-workers who ease the burdens of our disorderly blood cancer, thank you for your good thoughts and expressions of support. Happy Easter and Chag Pesach Sa’me’ach.
Comments on: "Whatever happened to Zhenya?" (24)
God Bless You.
Thank you so much for what you have done and, I’m confident, will continue to do for all of us in the MPN community. Bless you.
Dear Zhenya, I will never forget the day that you came to see me at Kaiser in Oakland before my surgery for ovarian cancer 37 years ago. Sending love and laughter and prayers.
My dear friend, It seems that it is another miracle that you are still with us on earth. It astounds me that you were able to write such an eloquent piece about your health crisis. In fact, it totally floors me. I sure hope that you will rebound that you can enjoy the birth of your grandson at Passover. My the Lord heal you and bless you with extra days.
So sorry you have had such a terrible ordeal. My husband was diagnosed with CHF, 6 years ago, given a pacemaker/defib, and is still physically in this world. I hope you will continue to heal and your heart will bee able to support your excellent mind. Wishing you all the best in all you do.
I’m so happy you’re such a survivor.
I just got home after a forgotten stint
Dropped causing severe liver distress
I went to the ER Saturday , on Tuesday they
Did an endoscopy to get the stint
And a collection of stones out of me.
You’re right Man plans god decides
I’m still very exhausted.
Wishing you all the best as you recover and move Onward. Much blessings to you and yours.
Dear Friend, As Marina Peed said “The strength of your spirit is like none other”. Sending you my kindest regards from the Land of Oz. Rejoice in Elijah’s birth and spend time with your loved ones. Thank you for all the work that you have done and the work you will do in the future.
Zhenya, Enough with these tests of your life force! The strength of your spirit is like none other. You teach by doing and persevere through one serious physical obstacle after another. As you live to write another article, challenge and provoke the systems to work in the best interests of MPN patients, remember that you are beloved and appreciated by so many around the world. And may your strength, courage, and wisdom transcend when you hold your sweet grandson, Elijah. <3
Good to hear from you Zhenya. You have been through a lot. Stay strong!
Oh boy Zen-what an ordeal! Wondered where you were and of course happy to hear you are healing. There are few people that can stay positive like yourself under extreme health issues. You are good and kind beyond words. A true champion and guiding light for all MPN patients. Rest as best as you can. Congratulations on grandchild.
Your work has come so far; your tenacity is inspiring. But please do take care. Mazel Tov on the sweetness of a new grandchild on the way!
Sending love and prayers your way. Bashi
Wow- what a bad combination of serious health issues. Wishing you all the best and definitely enjoy your your new grandson.
God Bless and praying for you! We need a drug that cures these blood diseases! Hope it’s Imelestat and extensions of what it takes to cure these blood disorders!!!
Zhenya, you have to quit doing all these health things “to us” who rely on you. Keep fighting the good fight but please take care of yourself. And rest your body when it tells you to. Congrats on the new grandchild. Barbara
Zen, WOW! A true warrior! I’ve known one other warrior In my lifetime – My Paul, which allows me to know one when I see one. He fought valiantly until the very end and left with the utmost dignity. Keep fighting, you have so much wisdom and knowledge to give. Enjoy that new grandson. We too recently welcomed a new grandson and i am here in WA, able to enjoy him. My son Paul says, “Lollan really likes you Mom!” At birth, they like anyone with a warm bottle! I wish you many memories with your precious new grandson. Be well.
We were all worried. Welcome back to the fight.
You are one full of heart human being.
What a fighter you are. I hope you come back strong. You make the health issues I’m facing a picnic. All the best and enjoy that grandson!
Zhenya, sorry to hear that tale but at least there is a positive ending. Enjoy your new Grandson when he arrives. I now have seven grandchildren and over a period of several months one and then a different one spent time living with me. Treasured time together.
Keep up the good fight.
Welcome back Zhenya! We missed you and worried about you! Best wishes for healing and for a healthy grandson!
I pray that you recover from this episode and that you
go on to complete your research with joy and laughter. Blessings and love xx
Wow, Zhenya! You are one resilient son of Abraham. Sorry to hear about all that you have been through, but glad to read that you are back on your keyboard with your usual clarity. Praying for your continued recovery and new strength. Congratulations on the new grandson. May his arrival be safe and may he be a great blessing to you and your family.
Thank goodness I could tell there was a positive ending to your tale by the cogent way it is written. Wow, Zhenya, you are amazing! Praying for healing and comfort for you! My family has celebrated the birth of my grandson Jack,born April 5. All best wishes to you and Elijah!
You are in my prayers for recovery and for a Happy Pesach to you and your family.
Try and keep a positive attitude. You sound like a man with much inner strength.
My PV migrated to AML this past October, and I am 41 days post SCT. I know how it feels to try to recover and stay positive. We can both do. It.