I having a bit of a freak out.In 12 days, I will check into the hospital to get a life-saving bone marrow transplant. I need this transplant. Without it, the doctors say I will not survive.
Not surviving is simply not an option.
My husband has already had a wife die from cancer. My kids have already had a parent die from cancer. I have to do everything I can to keep that from happening again.
So a bone marrow transplant is the only option.
The problem is, the transplant center is in Richmond, Virginia.
I live 90 minutes away.
I just completed two full days of testing at the Medical College of Virginia (MCV) in preparation for my bone marrow transplant. Things like a Thallium stress test, a CT scan of my head, a CT scan of my chest, a bone marrow biopsy, a pulmonary function test, taking 20 vials of blood to test for antibodies and viruses, and an assessment from the social worker.
It was exhausting. Mentally and physically exhausting.
But it was also the last hurdle before I go in for my bone marrow transplant.
I also got to see where I'll be living for the month after transplant. The transplant clinic at the VCU Massey Cancer Center is a 21-bed, self-contained unit. I like that it's separate from the rest of the hospital. I'll be with other bone marrow transplant patients.
So, typically, once a donor is secured (and my generous, selfless donor is ready to go!) this is the protocol for a bone marrow transplant:
Preparation stage - pre-transplant testing. This is the testing I just completed. All that's left to do is to sign the final consent papers. That will happen next week.
Conditioning stage: This phase involves heavy doses of chemotherapy with the goal being to kill my bone marrow and immune system and any cancer cells. All to make way for the donor cells. This conditioning regimin lasts about a week. It will start when I'm admitted to the hospital.
The transplant: Often referred to as Day Zero, transplant day can actually be anticlimactic for the recipient. The donor's cells are harvested and then delivered via a designated courier to my doctors at MCV. They are put in me through a central line - kinda like a bag of blood is delivered. Then the cells magically know where to go in my body.
Engraftment: This is when we wait. Engraftment is basically the donor cells taking hold and growing. Engraftment signs usually appear 10-28 days after transplant. Or, in transplant language, at days +10 to +28. (Since transplant day is Day Zero, the days after transplant are + and the days before transplant are -) Once my white blood cells are at a safe level, the doctors can talk about discharging me from the hospital.
Recovering after engraftment: This phase of my recovery, usually up to day +100, involves needing to live within 30 minutes of the transplant center. That means I have to live in Richmond for 1-3 months following discharge. This is the phase I'm struggling with. I can't seem to reconcile living away from my family for 100 (or more) days.
Long-term recovery: Finally getting to go home. It usually takes transplant patients a year or so to get their strength back and adapt to their "new normal."
I understand the process. I understand that in order to live to see many more Thanksgivings and Christmases, I must sacrifice this Thanksgiving and this Christmas.
And I am grateful for so many things. I'm grateful that the transplant center is only 90 minutes away instead of hours away - like in New York or Baltimore. I'm forever grateful for the donor who selflessly agreed to save my life. I'm grateful for all the help we've been getting. Help driving the kids to their jobs, etc. Help driving to doctor appointments. Help grocery shopping. Help preparing meals.
I am forever grateful for so, so much.
Which is why I feel guilty for freaking out about being away from my family for 100 (or more) days.
I think about how much time that is - how many events and milestones I'll miss - and I freeze. I don't know what to do. I don't know how to cope.
Forget the logistics of Christmas shopping, if we're talking 100 days then I won't be home until March. That's almost Easter.
I've been holding on to this Bible verse all week:
Now faith is confidence in what we hope for and assurance about what we do not see.I'm trying to have confidence that I'll be home by the end of January.
Hebrews 11:1
And I'm trying to have assurance that my transplant will be successful.
Praying for you Patti and the family. The Lord will take care of you.
ReplyDeleteThank you Maryann!
DeleteI pray for a successful transplant and that you have zero complications. I pray that you are comfortable throughout this process, especially with the idea that you must be close to your medical team -- and not Mike and the kids -- throughout what I will call, literally, the home stretch. A few notes of comfort: 1. The holidays mean the kids will be out of school a good bit and can be at your side. 2. You will get to forge a special bond with Mike-Mike, who is just a few minutes away as a student at VCU. 3. You may be a little stir-crazy, but that's actually going to be good for you. I love you, Patricia Ann Colegrove Minium Moonis. Fabulous post. xoxoxo
ReplyDeleteCalling it the "home stretch" is a good idea. Keeps things in perspective. Love you, Paige!
DeleteWe call day zero my dad's REbirthday! It is celebrated EVERY YEAR! You can do this. Your family can do this.
ReplyDeleteI LOVE the idea of calling Day Zero my REbirthday! Awesome!! XO
DeletePatti - I subscribed to a site called The Brave Girls Club shortly before my transplant...it send inspirational message to you each day...today's message seems like it was meant for me to share with you
ReplyDeleteIf you are ever in a place in your life and it feels like things are being torn from
you one at a time....
..until it feels as though you are stripped down to nothing...
..please, dear friend, see it through those beautiful wise eyes of yours. See this
time in your life for what it is capable of becoming, rather than for what it may
seem when the wounds are raw and fresh.
So many times, the changes and shifts that come in our lives are swift and wild. It
seems as though the carpet is being ripped right out from underneath us. Sometimes
these stages even feel cruel and senseless.
Nothing in life comes to us without something valuable attached to the other side of
it. There are always great gifts available to us when what seems like tragedy comes
along.
We often find our greatest new adventures, relationships and opportunities because
something ended that we thought would last forever. We find people and places and
talents and loveliness on the new paths after we are stripped from the old paths.
What seemed so merciless often ends up yielding the greatest mercies of all, helping
us find exactly what we are meant to find, and who we are meant to find.....and to do
exactly what we were meant to do.
Please trust the journey, lovely you. You are on your way to somewhere so magnificent
that it will take your breath away. Don't give up now....keep going....stay on the
path....just around the bend there is a life like you could never imagine.
It is hard to be away from your family for so long...but right now the focus has to be on you. Doing what you need to do to make sure that you will be there for future holidays is a must. The road will feel long and hard at times, but keep your eye on the prize and a positive attitude and you will get there. Sending HUGS to you as you embark on this great adventure...
Cheryl - Haplo SCT Jan 2011
Such wise words. Thank you so much, Cheryl. "Trust the journey ... keep going ... stay on the path" ... LOVE this.
DeleteOh Patti...my heart just breaks for you. It's ok to feel this way. I know you know the blessings that you have and the gratefulness for the opportunity that lies ahead of you...but it is ok to miss your family. To me...that just shows how much love there is in your family. It will soooo be worth it when those 100 days stretch into 1000+ days to come. Love you and sending prayers, hugs and constant thoughts!
ReplyDeleteChristy Kelly Deneau
Christy, Thank you so much ... one day those 100 days WILL stretch into 1000 days. :) It's easy to get consumed by the immediate. Thanks for the good reminder.
DeleteI'm still praying for you, Patti. I want to see you poolside next summer cheering for Helen! I have a friend at my church who had a bone marrow transplant at the Massey Center and has told me a bit about what it's going to be like for you. I can't possibly imagine what you're faced with, but I do know that God will be with you.
ReplyDeleteFord, thank you so much for your prayers! Yes! I can't wait to sit next to you at the pool!
DeleteThis is legitimate cause for a freak-out! Know you are loved and lifted up by so many.
ReplyDeleteLisa, Thank you so much! The freak-out continues ... !!
DeletePatti, Your life as a wife, mother, follower of Christ has been about giving. Now it is time for you to RECEIVE.....a new life: REBIRTH. And just like the process of giving birth to your children took TIME, so will REBIRTH: your transplant. Part of the rebirthing Time will go by quickly and part of it may seem slow. But instead of freaking out about being away from your family during the rebirthing process, focus on the grand and glorious days of being WITH your family with a NEW LIFE. They want and pray for a new life for you. So do you. But in order to be REBORN, much of the old must be treasured and remembered.....as you live in different ways and places. All part of REBIRTH. Difficult but do-able for you are a warrior.....fighting, freaking and finding hope in HIM.
DeleteLena, thank you. You are so wise and so right!
DeleteI need to focus on my life after my REBIRTH. And I know who goes before me.
XO