You can’t make this shit up!!!
I sell real estate in Seattle. I am 57 years old and a fifth generation Seattleite.
Currently in my fifth year of this medical journey that started with breast cancer. My mother died at 45 from breast cancer, her mother and sister also with breast cancer. From the time I was in my early 20’s, I have been in a high risk screening group for breast cancer. I do not have BRCA I or II. One beautiful March day in 2017 I was sitting in an open house near where I live and my phone rang. It was the doctor that performed my preventative breast MRI the day prior calling to inform me that I have breast cancer, “you need to call your breast doctor’”. Short, sweet, no fluff. Gulp. I finished dealing with the buyers at my open house, locked up, called my best friend.
Two lumpectomies, one year of Herceptin and 37 sessions of radiation, later …. At exactly one year of treatment, my breast cancer doc called and said ‘hey, your blood work looks off, please go get another blood draw’. I did. The next call was to go see an oncologist on floor 4, she was waiting for me.
The diagnosis, that day, after a consult with said doc and a bone marrow biopsy, again, that day (56 years old) was AML Leukemia. Seriously? Crap! My sister and I had lost our brother to AML Leukemia a few years prior – he was 47. (yes, I have undergone genetic testing, a lot of it) Called a past client who is a mucky muck at Seattle Cancer Care, and she got me in to see a top AML doc the next day. Yep, AML. Into the hospital for a week of chemo and … the journey began.
Fast forward …. 2018 was weeks and weeks and weeks in the hospital with multiple rounds of chemo but also the infections, neutropenic fevers, the ill effects of the chemo., (hair loss #1) DRES syndrome with my skin and on it goes. I survive. I get into remission. NOT an easy task. Enter 2019.
Annual girls trip to Las Vegas for a weekend in April of 2019. Four of us, arriving from different parts, meeting up at my gal pal’s condo off the strip. Dinner that night at a swanky restaurant celebrating my survival of AML and all of us together again. So much fun! Next morning, coffee, chitter chat, a smoothie before we go down to the gym to work out. I am on an EFX (Elliptical) machine with one of my buddies on the machine next to me. (we are all workout junkies and fit women). Not even ten minutes in, I feel this horrific BANG in the center of my chest, no words to really describe it, and I reached over to my friend and said ‘something is terribly wrong’. Stepped off the back of the machine, quickly got to the floor ……. Woke up the following Tuesday in ICU, Las Vegas, an hour off of the ventilator.
So many blessings – starting with my friend who was next to me is an OB/GYN in Seattle and she was able to triage the situation. Called 911, the other two gals worked the door and the building staff. Of course, I was out and remembered nothing. That Saturday morning when I arrived in ER, there HAPPENED to be a thoracic surgeon in the ER or doing rounds or something. He was on his way out of town the following day on an int’l trip. He, Dr. “J”, saved my life. They thought it was an envelope repair but once I got into the OR, that was quickly dismissed and I had a full on type A ascending dissection. Not a word of warning. Crazy.
My sister was on her life’s dream of a motorhome adventure across the US, in Sedona, when she got the call from my friends saying that I was headed into the OR with an emergent dissection, no idea how things would go and please come as fast as you can. Seven hours later, a new pig valve, Dr. “J” said to my friends … we wait and see. Hopefully her brain still works. Great.
My daughter flew down, my best friend came, etc etc. I woke up several days later in the ICU, just off the ventilator. First person I saw was my ex-husband. Funny, but true. He was sitting at my bedside and stayed put for several days. Another blessing, I think. Hah!
Was there for three weeks. The worst time of my entire life thus far. Such hard core drugs, scared to death, my speech was slurred and on it goes.
When I did finally get clearance to go home, I was still SO drugged up. I did not understand or have a clear idea of what was still in front of me, nor do I still, to be honest. I know that there is another one, maybe two surgeries to correct all the additional dissection in my subclavian, carotid, arch, descending aorta and into my legs. The ideal time of that additional repair (#1) was within 8 months of original dissection. No go.
Well, cancer came back. Now I am forced to deal with AML again. In order to take on another series of high dose chemo, (admitted to hospital) they decide to put a stent down my dissected descending aorta as they feel I wouldn’t survive chemo with the descending dissection. So, December of 2019, surgery, done through my groin and three days in ICU. TVAR procedure.
January 2020 admitted to UW for a week of chemo and all body radiation to prepare me for a stem cell transplant in March. Another huge process and learning all the in’s and outs of a stem cell transplant. My sister has come home to be with me, her motorhome parked at my aunt’s house for safekeeping, she moves in with me. Second hair loss. Did pretty well on this, managing my fears about stem cell transplant.
Enter Covid. Weekly visits with my new stem cell team in preparation for the three weeks in the hospital to receive the transplant and my doc says ‘sorry, your transplant has been postponed’. Really? Tears flow. Transferred back to AML doc who will take care of me until we can get back into the transplant team and he decides we will do a ‘maintenance chemo’ for five days each month until I can get to transplant again. Brother. Really? Okay. Here we go.
In the time of Covid, no one can be with me in the hospital. My sister dropped me off in early March at the front door of the hospital and up I go ….. transplant received on 5/16/2020. Terrible. Awful. So so so sick. Cancer is in remission.
Now, August of 2020, focus back to the aortic problems and getting it fixed. Aneurysm is now measuring a 5.6 after the most recent CT scan. Keep in mind, I am 5’2” and 130 lbs. That is one big aneurysm. While my cardiologist is overseeing things, it is really my heart surgeon that is the key here. He calls the shots. I am scheduled for 3/11 but it is not looking hopeful given the taper of my prednisone.
October of 2020 I got delayed response, GVHD (graft vs. host disease) of the skin from my stem cell transplant. A bad case. Huge amounts of Prednisone; our friend and enemy both.
Heart surgeons will not operate on me or anyone with a suppressed immune system as it makes our vessels weaker than they already are.
Here I sit today, February of 2021, managing my GVHD and praying that the second attempt at tapering these drugs will work so that I can get my aortic surgery. The surgery that I am set up for is Redo sternotomy with aortic arch reconstruction, with reimplantation of the innominate artery, left common carotid artery, and left subclavian artery. We will anastomose the distal arch graft to the distal descending aorta and endograft directly. Will also consider possible thoracic endograft.
Something those of you who have walked this path understand well. Scary.
I am alive. Managing the best I can and incredibly grateful for all my many blessings. Everyone at Seattle Cancer Care, University of Washington Hospital and Dr. J’s team at Spring Valley Hospital in Vegas who have worked so hard at keeping me alive, thank you.