I can hear that song, “I’m Coming Home, Coming Home. Tell the world I’m coming home.”
WHAT a journey! Sitting in the Dr’s office last Thursday and telling the doctor (our primary and also the head of the group) all that had transpired while he was on vacation and which parts upset us the most… He validated it all. He said there was nothing more I could have done as Mark’s caregiver. (What a pickle it is to be trying to take the best care you can of people in two different spots-that can potentially be an hour or more apart from each other, in a situation that normally wouldn’t be so bad, because at least everyone would be in one place.)
Anyway, at the end of our visit, I ask, “So, can we put it on your radar that we would like to take Mark home soon. Can we start thinking about that?” “Yes”, he answers, “He can go home this weekend.” “WHAT? No, he can’t. My house is a wreck!” was my response. (Everything still needs to stay VERY clean and he still needs that 24/7 caregiver while he is inside that 100 day post transplant process.) “Ok,” he says, “Then he can go home as soon as you have the house ready.”
No pressure. You know that moment when you just finished the big project, or got done with basketball season or a tough semester of classes and you just all of a sudden have no energy and get sick? That’s how I felt. I thought, I am exhausted and I have no rest in sight if I want to get Mark home quickly.
I knew I needed to pace myself if I wanted to finish this race strong. So, I got some rest Thursday. By Friday, I had checked the mail and someone from Cleveland anonymously gave some cash (yes, they mailed cash from Cleveland- not check.) And then right about the same time, a sweet friend called and said she was having a lady who cleaned for her come and deep clean our main level. She told me I had been through enough, she wanted to help take something off my plate. AMAZING! God continues to meet our needs through wonderful people! Now, I am able to get the carpets professionally cleaned as well as the main living area of the house which leaves me and the girls, the bedrooms, bathrooms and some repair work. Honestly, it doesn’t sound too bad as I write it- but you have to remember that I missed my usual two times a year of organizing and deep cleaning through this ordeal.
The journey is not over, but this next part seems so much easier than the past five months was. Mark will be home. He can be more social.I can be more social. We can both be more involved than we have in months with our daughters. Heck, I might actually be able to make it to the dance studio to teach a little again!
Day 76 today means that 100 days is 24 days away. Thankfully, my sister-in-law is here right now. She has a huge heart and has been so ready to pour herself into our situation. She is staying a little longer to help and she and my aunt (who called randomly one day to say my uncle thought God was telling him we needed her to come out) is overlapping her time and then will be here a few extra days which will bring us to day 92. (During the time when I have both of them here, I plan to rest as much as possible and take care of myself more than I have been able to the past five and a half months.) A dear friend who was originally going to come can’t because of her own personal health issues – but even so, we are being taken care of, completely. Again, AMAZING!!
The doctors will check on Mark twice a week still and then after 100 days we should be going to once a week and so on. They will still sample his bone marrow (the six he has already had are not enough) at 90 days and then potentially at 6 months and a year. The doctors say that when he gets to his 2 year mark, we can pretty much rest assured that the AML won’t return. We are counting on that!
Our prayers for now? That the AML won’t return and that his body will stay strong and unaffected by all the chemicals and drugs they have used and continue to use in an effort to kill cancer and all the stem cells to accept his body. All of these drugs have risks and harmful side effects and they will continue to watch his body closely concerning that. As well as continued monitoring for Graft V Host Disease.
Mark still won’t be driving for some time because of the medications he is taking. So, even after the 24/7 “Caregiver” time ends, I will still be needed as “Driver”. But, more and more freedoms for all of us are right around the corner! I feel like just breathing and relaxing and getting my workouts in a bit more regularly are finally in sight!
Personally, this has been the hardest road of my life and I see the end ahead. As I reflect back, I know some have asked where my family has been and I say to that-my family has been with me every step of the way!! Phone calls, texts, lots of prayers, cards, money. People should never judge something they know nothing about-but unfortunately some do. Also, I realized through this that although some people are truly able to set themselves aside to truly care for someone and allow someone to go through something like this, staying by their side, again, without passing judgment, is something not everyone is capable of. I am thankful to have SO MANY in my life that I can be real with-at my worst AND at my best- and be loved regardless. THANK YOU!!!!!
A few people I know have played the role I have and they KNOW what this takes and they have been one of the biggest blessings to me. This is how life works. You go through really bad stuff- so bad that you think no possible good could ever come of it until you realize that what you went through gives you exactly what it takes to have that extra dose of compassion, patience, courage and love to help another person get through their worst and most difficult time. THANK YOU to those who have been “the caregiver” and have helped me to be one. THANK YOU to those who have lost and suffered and have been there as some of our biggest supports!
SOOOOOO many family and friends have stepped up in big and small ways with support and love in all shapes and sizes and all kinds of ways and it has been nothing short of REMARKABLE! THANK YOU!!!!!!!!!
If I were comparing this to hiking a mountain, this would have to be the road traveling back down, I think. Although, that’s actually the hardest part for me-it kills my knees! But, you have more oxygen and you are heading back toward more level ground…. hmmmm….
GOD BLESS YOU! Don’t leave, but please, breathe a little easier with us and watch those knees as you head back down the hill! 😉