1) Love and support from everywhere. No, really, from everywhere. We had meals coming in every other day and we could’ve had everyday if needed. We had babysitters, errand runners, house cleaners, grass mowers, prayer warriors, rides to appointments and support for my husband and kids from their friends who took them out for fun when they needed a break. From the day I was first diagnosed all the way past when I returned home from the isolation after transplant there were people offering help of every kind. The potty seat broke in the middle of the work week, one of Dan’s colleagues recognized the urgency of a broken potty seat with three boys under age 5 and hurried to the store to get a new one. What was truly amazing was the monetary donations that came. We initially were quite concerned with the cost of all of this. I was in the hospital for weeks at a time repeatedly. The amount of tests I had done is astronomical. Dr visits, ER visits, an ambulance ride, 3 months in a Marriot Residence Inn, medical supplies, home health visits, blood products, the list is never ending. We prayed and planned for the worst but our prayers were answered. On more than one occasion, we would get a very large medical bill and within 24 hours a donation would come in or a grant award would come through. When I was all said and done, we almost broke even. It was truly a miracle. Our very young kids didn’t have to go to daycare because my mother in law and father in law were both recently retired and were willing to take turns living with us. Things often were done before we even realized we needed something. Without the love and support of our family, friends, church, schools, colleagues and community we would not have survived financially or mentally! If you are going through a stem cell transplant, you and your caregiver will need help. There are organizations that can help you if you don’t have a support system in your community of family and friends. Reach out. Don’t do it alone.
2) I grew up as a good LCMS Lutheran. I went to church most Sundays and attended a Lutheran school from grades K-8 and a Lutheran college. I knew all about God and Christianity and everything I thought I needed. That is, until I faced death. Funny how God works. The day prior to my diagnosis, I had said “I just need a break”. I needed a break from parenting, cleaning, cooking..you get the idea. What I meant was a break on a tropical island or at the very least a solid uninterrupted 10 minutes in a bubble bath without anyone needing me. God sure gave me a break. I didn’t cook or clean or parent for close to 2 years. And yet, not once was I mad at God. I was hopeless, I was sad, I was angry at leukemia, I was lonely, I was angry at the doctors and nurses who couldn’t answer my questions but I was not angry at God. Not sure why I wasn’t because in the past God has been the target of my anger but not this time. I knew God was the only way I was going to get through this. My faith is so much stronger now than it was before. And for that, I am thankful.
3) When my boys make a mess or there are piles of laundry or everyone is hungry at once I get overwhelmed and sometimes irritated just as any mother does at times. However, it lasts such a short time because I remind myself that I’m here to do the laundry and clean the mess and make the meals and I’m thankful. There was a time when I couldn’t do that and it wasn’t certain that I would ever be able to do it because my survival was hanging in the balance. It could’ve gone either way. So today, I’m thankful for the loads of laundry and the crumbs all over the floor and the never ending grocery shopping and meal prep. There is nothing I pray for more than to be given the privilege to raise my children, grow old with the love of my life and to meet my grandchildren and maybe even great grandchildren. I appreciate the little things. In the long run, the little things make all the difference.
4) When you have an allo stem cell transplant, you have to be in isolations for 100 days post transplant and you must have a caregiver with you at all times. That’s a lot of time to talk to someone. Lucky for my friends and family, I had a wonderful cast of caregivers that took turns. Nobody was stuck with me for too long! During that time, I was blessed with getting to know my family better and making bonds stronger. Friends from years and years ago came to visit and it felt like we saw each other yesterday despite it being over a decade since I saw some of them. Never will I be able to say I am not loved. I am . My family is. God is so good.
5) I’ve mentioned old friends but I’ve made some great new friends as well. The nurses and doctors that saved my life have had some great conversations with me. One particular nurse, Alneta, held me while I sobbed on more than one occasion as I tried to emotionally deal with my situation. The family of a fellow transplant recipient walked with me in the hallways and visited with my caregivers. When their own family member sadly did not survive, they generously gave my family their parking tokens and a monetary donation. We still exchange Christmas cards. There are friends that are going through a transplant after I did or will be in the near future and I’m able to answer their questions and be here to support them. It is truly amazing how many people the leukemia has brought into my life.
6) Clarity. Prior to all of this craziness, I was searching for what I was meant to be. Why was I put on this earth? What was my purpose. God has given me not one but two second chances at this life. I thought my initial diagnosis was the end. I came though. When I relapsed and endured the transplant, the chances were less than promising that my life would continue. Yet, here I am typing this while my boys and I watch “A Bug’s Life”. Amazing. I’m here to be a mom, a wife, a friend, a daughter, niece, sister, cousin and to help. We, as a family, were given so much. Now I want to give back. I want to make a difference. Today, I live my life with a purpose: to raise my boys to make this world a better place. Not always sure I’m doing a good job but at least I know I”m trying.
7) Laughter. There are few people who can make me laugh so hard that I nearly wet my pants (ok, fine...I may have leaked a little). But the ones who can all managed to do so while I endured the trials and tribulations of leukemia. Trisha, my oldest friend who has been a part of my life since we threw sand at each other at the kindergarten sand table, came to visit me as often as she could. The nurses would see her coming down the hall and usually just close my door behind her because the knew the laughter would be loud. We laughed about everything and that was exactly what I needed. Shortly after I had returned home from my final chemo round in 2015, we had a party our house to celebrate. My chance of relapse wasn’t high so I thought we were done with leukemia. I was wronge of course, but we celebrated with great joy and hope that it was behind us. There is a group of friends from college that we’ve hung out with for years and when we get together, its a guaranteed good time. We played Cards Against Humanity. If you’ve ever played that, you’ll know you can only play it in certain company. This was the company such a game was accepted. I laughed and laughed and laughed and again, it was what Dan and I needed. Laughter is wonderful medicine. Especially when shared with friends.
Oh, and last but certainly not least...I lost 70 pounds. My weight has been trouble my entire life. Always the chubby one, the one with beautiful eyes, the girl with “curves” (aka...rolls). I’d tried losing and toning and all that stuff you’re supposed to do. Never worked well. I was a size 18 and nothing was going to change that apparently. Then leukemia and chemo and stem cell transplant came along and lo and behold...I”m a size 10. Now if only I arrived here in a more humane way. Again, God, when I asked for help with my weight loss, this wasn’t what I had in mind...but your plan is always best so thanks. I guess. Seriously though, I”m actually at a perfect weight for my height and I plan to stay that way.
You know how Oprah has her “Favorite Things”? Well, here are my favorite things that I’ve discovered as a result of transplant: heated throw blankets, Blistex, eye drops, yoga pants, fresh flowers, homemade soup, graham crackers crushed up with milk, ice cream, walking in nature, devotions and time with God, Hulu and board games. These are the things that got me through some tough times. And now, I keep them all on hand or make sure I experience it as often as possible.
And with that, I must say Goodnight because I have a jammed packed day of helping in my kindergartener’s classroom, taking my 4 year old to the doctor and having family over for dinner tomorrow. Mundane you say? No way. These things are important because I could not do them even last year. Classrooms and doctors offices and cleaning for guests were off limits until more recently. So I treasure these times that I can do these things. Have a wonderful night.
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