Yesterday was Day Zero, a very special day in the world of bone marrow transplant patients. It’s considered a new birthday of sorts, and certainly a rebirth, hopefully into health. Yesterday my Mom received my bone marrow, and now those amazing cells are finding where in her body they “know” to go. If all is successful, her blood type (A+) will become my blood type (O+), but most importantly if all is successful she will have a shot at a longer life.
The day began for me at 3:45 am, since Hopkins told me to be in the surgical center by 5:30 am. My Dad drove me down and Lon stayed home to watch Michael. When I arrived at Hopkins it turns out there was a mix-up, so I didn’t get in to surgery until almost 10am. In spite of the snafu, I have nothing but praise for the staff at Hopkins– I’ve been in a few hospitals here and there, and Hopkins excels at professional courtesy.
I met with the anesthesiologist to discuss pain management during the procedure. There are two ways they can do it: 1) a spinal block and something to make you relax or 2) general anesthesia. Up until my discussion with the doctor I had imagined I would pick the spinal. I have an unreasoning fear of general– it makes me sick afterward and I’m freaked out by the mere mention of “death” (however remote) as a side effect. But when she described the spinal to me, I thought better of it– I would be aware of what was happening, it might take as long as 4 hours, and sometimes it would feel difficult to breathe (because I’d be propped on my side and my airway would be in a funny position). As to what would be happening? 4 incisions in my lower back, to allow entry for multiple long needle sticks into my hip bones (about 16). General it is then!
So, no makeup, questionable hair, and blind as a bat (no contacts) they wheeled me into the OR where I met Dr. Matsui for all of a minute. I got a quick, blurry look around, and saw I would be on a rather cushy looking memory foam mattress, propped between two large silicon “sleep positioners” (like for babies) in the unfortunate color of blood red. Then, one of the doctors asked if I was nervous, and I said I was, and they gave me something for that….and I woke up in the recovery room.
And…ouch! Who knew “lower back” was a euphemism for “we’ll suck it out of your butt” and “discomfort” meant it will feel like you decided to use a thigh press at the gym ALL DAY set on 500lbs? So, yes, it hurts, BUT, it is a totally manageable and almost comical (if you could see how I’m walking today) pain. Having endured labor and a kidney stone, this is doable. It’s localized, and narcotics are my friend.
I spent 3 hours in recovery with my Dad at my side (when he wasn’t trying to finagle one of the PACU recliners for Mom’s room– the chair in her room is not comfortable). Here are some blurry pictures. I forgot my camera and had to depend on my phone for pictures.
This is me, on some nice drugs…
This is Dad, between recliner negotiations….
Recovery involved sucking down 5 cups of water and/or pepsi, and getting my pain meds adjusted until I was able to walk. At about 2:30pm, I asked them to wheel me upstairs, to see my Mom.
Mom was going nuts all morning, worrying about me, but I’m happy to tell you, she’s back in her real clothes, she’s eating again, and she looks great. Her’s a shot of her:
By the time I got upstairs, she had been receiving my marrow through her port. They brought up what turned out to be a two-liter bag, and then (so as not to damage the cells) they allow gravity to do it’s work. The drip took from 1:30pm until about 6pm. I took a blurry picture of the bag, and it doesn’t do it justice. My marrow was a beautiful cherry color, and looked nice and healthy. It actually received compliments from the nursing staff.
Mom felt no side effects during the infusion, but did develop a low fever later yesterday evening (which is normal).
Now is the part where I sound a little kooky, but I will tell you once in the room I had a chat with my bone marrow and with Mom’s body (hey, if they say the marrow “knows” where to go in the body, maybe it pays attention to other stuff. Isn’t mitochondrial DNA a whole universe unto itself? It was worth a shot). I reminded both parties that 41 years ago they had shared a lymphatic system, and that I was not a stranger–I told my marrow to burrow in, and Mom’s body to REMEMBER ME and welcome me back.
This whole experience has been awesome and humbling. I am so grateful to be able to help my Mom and I hope with all of my being that this works. I am humbled to know after all the physicals I have been through over the last few weeks that I am absolutely healthy. THAT is a gift not to squander. Consequently, since the only thing “wrong” with me is that I’m an overweight stress eater, I’ve started a new lifestyle change (can’t say diet) called “Your Mom is Going through Hell, Certainly You can Stop Stuffing Your Face”. So far I’ve lost 6 lbs. I owe it to MY son to be as healthy as I can. Some things are out of our control, but I’ve made a vow to do what I can with what I can control.
My friend Ilyse sent me a beautiful prayer that was said for my Mom at her temple. I’m going to close today’s entry with it:
May the One who blessed our ancestors — Patriarchs Abraham, Isaac, and Jacob; Matriarchs Sarah, Rebecca, Rachel, and Leah — bless and heal Kathy. May the Holy Blessed One overflow with compassion upon her, to restore her, to heal her, to strengthen her, to enliven her. The One will send her, speedily, a complete healing — healing of the soul and healing of the body — along with all the ill, among the people of Israel and all humankind, soon, speedily, without delay, and let us all say: Amen!
Reading your beautiful and well written story, the first thing that comes to mind is what a miracle and a blessing it is all mixed together. Your story is one of true faith, miracles and boundless love. I will always remember your story and smile knowing God is always near. And if we pay close attention, you might just see him at work. You and your mom will continue to be in my thoughts and my prayers.
Thank you for the updates on your mom’s progress and the bone marrow transplants. You both are inspirational to me. Jim sent me your Mom’s emails. I have read them many times trying to understand the process. I don’t find talking to your bone marrow kooky at all. I’m sure it heard you. I’m so glad Kathy is wearing her new clothes. That day must have been so horrible.
I think of you both many times during the days and I’m hoping and praying for you both.
Please give Kathy my love.
Kellie, great work. How can that bone marrow not do it’s duty. You are a terrific correspondent. I love your writing. Please give your Mom a big hug and kiss. Oops,
maybe not allowed yet. May I say I liked your photo sans make up. Seriously Kellie you and Kathy are on this journney together and the rest of us are fellow travelers praying and hoping we can win this battle. God bless and thanks. Jim Hoffman
Thank you for the updates! We are praying!
Kellie, I’m sitting here with tears running down my face. It started with your mom spending the morning worrying about you, continued with your chatting with your blood cells and ended with the beautiful prayer. I agree…let us all say “Amen.”
We are all thinking of you and your family and appreciate the notes of her progress as well. It is all a true blessing! May you continue to find strength in each other!
Liz, Pete, Justin, Cathie, and Hannah