I've been through a lot in the last 4 weeks, let alone the last year and a half. In all honesty, fighting the rejection of my new cells vs my body has been way harder than the transplant itself. My intestines revolted in the worst way. I've been in a lot of pain. I look like a former shell of myself, sunken in eyes, major weight loss in some areas, while retaining weight in other areas because of all the steroids I'm on. Swollen feet & legs, and barely able to move on my own. Eating barely enough to keep me alive because of the resulting pain. I knew something was wrong immediately when the cramping started, but they asked that I wait out the weekend to make sure it wasn't a virus. I was admitted on a Monday. They have to be very careful not to treat an infection as gvhd (graft vs host disease) or vice versa. It took 4 long days of tests before I was diagnosed with grade 4 (the worst) gvhd of my gut. A couple weeks in, they realized the steroids weren't working as well as they wanted them to, and that I needed some additional help in the form of a drug called Remicade. Remicade is working, but completely wipes out my immune system & leaves me susceptible to dangerous infections. And it also brought me my first "no" from my insurance company. I can only get it by infusion, and they will not pay for it unless I'm an inpatient. I received 2 doses, a week apart while in the hospital, but up to 6 or 8 doses is possible if I need it. My doctors have not given up the fight on that one yet. I've been told more than I wanted to be that I may have made it through the transplant, just to have the rejection kill me, that my situation was/is that dangerous. Excuse my french, but BITE ME. Your science is fabulous, no question, but I have something else. Someone much bigger. I am not standing here of my own volition, or because I'm any stronger than anyone else. I am not a testament to the human spirit. He is. He is always there. Even when I lost sight of Him through the pain, I know He was there, right by my side. He is my pilot, my pillar of strength, and my light in the dark. I had a moment of clarity last Monday when I was released from the hospital. My sweet Sofia ran in the door from school, asking as she had every day for weeks, "Is Mama home?" I saw the bright happiness in her eyes when she saw my beaten up face & body & suddenly all my resolve returned in one fell swoop. I am a mother to two of the most incredible children I have ever met. Children with hearts of gold, who live & love fiercely. Children who have no doubt that God is making mommy better, and have never ONCE questioned that. I have so much to live for. He shows me that every day. Every painful thing I go through has made me stronger, and I'm grateful for that. I'm seeing progress every day. Less pain, walking more, eating more. I may not be finished with this part of my journey, but that's ok. I would not be here without the unconditional love of two incredible parents who have put their entire lives on hold for us & a husband who loves me with a fierceness I've never known. Each night, I look at the plaque hanging above my bedroom door that says, "Be Still, and Know That I Am God", and I go on.
Friday, October 2, 2015
Thursday, June 11, 2015
I haven't posted for quite awhile. I went back and re-read my last post. It's funny how we block pain from our memories so that we can go on. I don't remember much from the time when I wrote that. It was tough, I do remember that. My pastor asked me the other day if it was harder than I thought it would be. I really had to think about that one. I had heard horrible things about transplants. Honestly, I hadn't heard many good things. I sat next to a woman in the class to prepare me for transplant who was very negative. She was convinced she was going to die. I think I mentioned her before. I knew going in that I could NOT believe that way. I know that God is ultimately writing my life story, but if He intended for me to live, then I was sure as heck going to succeed with flying colors. So no, I don't think it was as hard as I expected. I knew what it could be, but I just couldn't focus on that. I had to believe that I was going to make it through like a champ.
I don't wish scary, life changing events on anyone. But I wouldn't give mine back for anything. Through this experience, God has used cancer to change me. I always thought I was a pretty decent person, but hindsight is allowing me to see where I've gone wrong in the past. I was guilty, for one thing, of sometimes judging books by their covers. Every person we pass has a story, and trust me, you probably can't look at them and have any idea what it is. ALL people are deserving of love & worth our time.
I've always been a relatively quiet person. An introvert, if you will. I just never really felt comfortable speaking up. But cancer has taught me that there is not enough time in this life to NOT speak up. I've learned that my opinion may indeed be valuable. I've started thinking about what I want in life, and have been asking myself what my dreams are, and for the first time, I'm just not afraid of those dreams.
I've learned a lot about people since my diagnosis. At first, all I saw were the stares. Most of those come from children who don't understand why I'm wearing a scarf & look bald underneath. My scarves have started quite a few conversations with total strangers. They usually start with something like..."That's a beautiful scarf!" or "I've been there, sister, & you're going to beat this." I have made quite a few new friends by opening myself up to these conversations. People are just nice at the core. They're not as judgemental as I thought. I get the feeling that we've all been touched by cancer in some way, and that we're all in solidarity when it comes to beating this disease back with a stick.
Being diagnosed twice with a disease that can kill you puts gratitude into a whole new perspective. I think I've turned into a "make love not war" hippy chick. 😊 Just ask my husband. I try to spend part of each day just doing whatever the heck I want. Sometimes that's taking a nap, a walk, a bike ride, or reading a book. I spend part of every day in the sun, just enjoying the warmth, and I love spending a few minutes alone just being totally quiet. I don't get mad at people. It's just not worth my time. Griping or complaining about other people only hurts me. That doesn't mean I won't honk my horn at you if you cut me off, but I won't hold onto it. 😊
The biggest change God has brought to me is that I REALLY want to give back. I have been incredibly touched by all of the prayers & thoughtfulness that have come my way this last year, and I just want to take what I have, and use it to help others. You all have truly inspired me. I'm pretty sure it's all meaningless if we're not lending a hand, knowledge, prayers, etc., to those that need it.
So...if you ever find yourself at the unfortunate end of some terrible news, this is what I can tell you from experience...
Be open to everything that comes your way, including help. Ask God for lessons. Many, many lessons. Ask Him to use your situation to help someone else. Know that pain is only temporary, and sometimes results in a major shift in your thinking. We can ask God for lots of things, most of which He will not give us because they're not for His glory. But ask Him to use you for good & to expose you to valuable lessons through your pain, and I'm pretty sure He will always deliver. Those rewards are way better than any tangible thing we could ask for. And it just doesn't get any better than that.
Wednesday, March 11, 2015
I received the amazing gift of my donor's stem cells on Wednesday, March 4. That day, going forward, will now always be recognized as my re-birthday. I got some info on him by accident that I'm not suppose to have. Hehe. I now know he lives in the MST time zone. Which means he either lives in Colorado, or one of the surrounding states, or he's Canadian, and lives in Alberta or the Northwest Territories. He donated his cells on March 3, then they were flown to Indianapolis and arrived that same evening.
Dr. Farrag tells me that I'm about to round that corner of misery. He thinks that possibly by this weekend, my donor cells will "Engraft". This is what we've been waiting on. It means that his cells will finally take up residence where they're supposed to be and will start multiplying, and even more than that, killing off any cancer cells that might remain in my marrow. This brings tears to my eyes.I have nothing but gratefulness in my heart for this MST time zone man.
I had let my faith escape me in my days of misery, I'm ashamed to admit it. Then a perfectly timed gift from a friend arrived in my room, and reminded me that"I can do all things through Christ, Who gives me strength." And them about a half hour ago, the wonderful man I married almost 20 years ago set my phone next to me with my worship playlist on. It's all it took. I feel terribly bad about the time I focused on my own misery, But I suppose that could be easy to do. I'm on the right track now. Thank you, Jesus.