29 October 2015

Almost transplant time

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.
Hebrews 11:1
I'm trying to have confidence that I'll be home by the end of January.
And I'm trying to have assurance that my transplant will be successful.

08 October 2015

10 things not to say to someone fighting cancer

Today is my cancer anniversary. Or, cancerversary. My kids didn't believe that's actually a word, or even an that it's an event to be celebrated.
Two years ago I was diagnosed with chronic myelogenous leukemia (CML). Things have not gone according to plan.
I failed one of the best front-line oral chemotherapy pills, Tasigna.
Failed another one, Bosulif.
Now I'm taking Iclusig. My oncologist thinks it may be causing some issues with my heart. But is worth the risk because the CML has gone rogue.
I transitioned into blast crisis.
Spent almost all of August and September in the oncology ICU.
Have had three rounds of IV chemotherapy, HiDAC.
Achieved remission.
And, finally, I'm awaiting a bone marrow transplant from a selfless donor found through Be the Match.
So much for getting a "good cancer" and simply taking pills for the rest of my life to keep me alive.
Oh, yes. I've been told, "At least you have a good kind of cancer to have." Excuse me?
I've had 2 years to hear gems like this. Here's my list:
10 things not to say to someone fighting cancer:
1. At least you have a "good cancer."
I think they mean at least my kind of cancer is treatable. Or that the treatment doesn't usually include removing a body part. Like breasts. Or part of my colon. But a "good cancer?" No. There is no such thing as a "good cancer." Spend an afternoon with one of our 7 kids and then tell me I have a "good cancer."
2. Let me know if you need anything.
I've seen this one floating around the internet lately. It's a wonderful offer. But I'm never going to ask you for help. Never. I can't think about what I need you to do for me. I can barely think about what I need to do for myself. Between Chemo Brain and unbelievable fatigue, it's all I can do to get through the day.
Instead, ask my husband. He will be able to look at his To Do list and give you a real answer for your amazing offer. There is actually a team of people coordinating things for me - rides that the kids need, shopping, meals, etc. Mike can add you to the list.
3. We can beat this.
We? I love that you are standing with me - sometimes holding me up. And when I go for the bone marrow transplant that will save my life I will need SO MUCH HELP.  Tell me instead that I can beat this and that you'll be standing with me through it all.
4. But you look amazing!
I think this one is said with the genuine hope of trying to be nice. But it makes me feel like crap. How am I supposed to look? But more importantly, I don't feel amazing.
5. I know how you feel.
Nope. You don't. You are not me. You do not have the kind of cancer I have. You have not already had the love of your life die from cancer. You do not have 7 kids. Nope. You do not know how I feel.
6. I just know you'll be OK, so many people are praying.
I believe in God. I trust Him completely. I believe in prayer and I pray. But that's not how it works. The more people that pray does not equal a "yes" answer from God. If it did, my First Mike would still be alive. God answers prayer. But sometimes that answer is no.
7. Have you tried this herb or magic pill or pixie dust?
I'm doing the best I can and putting my trust in cancer specialists. While I appreciate your suggestions, sometimes the things suggested can negatively affect the chemotherapy I have to take. And it can be dangerous.
8. God doesn't give you more than you can handle.
I do trust God. Completely. And I see His hands everywhere, everyday. But why does God think I can handle so much?
9. Have you prepared your kids?
Prepared my kids? There is no way to prepare anyone for something like this. They are terrified.
10. Nothing.
There are some people in my life who, since I was diagnosed with CML, have simply disappeared. I don't know if they don't know what to say? Are scared?
I feel sad and miss those friends. Conversely, there are many people who became my friends since my diagnosis. These friends are amazing. They stepped up right when the going got rough.

The best thing you can say to someone fighting cancer?
"I love you and I'm here for you."

02 October 2015

One day at a time

Everything in my life right now is focused on an event that is coming in the future ... but we don't know when.
Be the Match gives the above timeline for the transplant process.
I'm waiting for a bone marrow transplant
It will be amazing and incredible. Someone, likely a stranger, will generously and selflessly give me a chance to kick cancer to the curb. I'll get to start over with a brand new immune system (one that doesn't have any cancer cells). 
The transplant team says they are hoping for November procedure. But we don't have a definite date and won't have a definite date until a donor is finalized. 
And, it could take months to get my donor finalized. There are tests involved and matching that needs to be done. 
So, until we have a date set for my transplant, my doctors are watching me closely and trying to keep the leukemia in remission.
I finished up another week of consolidation chemotherapy today. I'll likely get another round of treatment in 3 weeks - sooner if my labs go downhill.
It's hard - no, it's impossible - to plan for this transplant.  I'm finding myself getting frustrated. How do I prepare for something if I don't know when it will be? Or how long it will last? Will it be over Thanksgiving? What about Christmas? Will the kids still be in school or will they be on break? Who is going to do the Christmas shopping? Will I be away from the house - living in Richmond - for the entire month of December?
I'm kind of a planner and this non-planning stuff is driving me nuts.
Talk about being forced to live in the moment.
This damn cancer is forcing me to be still and take things one day at a time.
Philippians 4:6 says
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.
Feels like He's talking to me. Telling me to be still, take care of myself and let Him worry about the details.