Christmas will be here in two days, and two days after that, it will have been two MONTHS since my last update! Oops! I've often thought about needing to fill you all in on what's being going on, but haven't had the energy or desire to sit and type it out. I sat down today and typed this out - it might be a bit rambling but it's an update :)
So the last time I posted, we were just starting to walk through the treatment process for ITP (immune thrombocytopenia pupura) which we were told was my diagnosis for the sudden drop in my platelets. I started the N-plate ("romiplostim") shots on a weekly basis. Our weeks were full of clinic appointments, lab blood draws, and infusion center appointments for the shots. (If I never have to go to that medical center again, I will be a happy woman! I know it too well!)
My platelet counts seemed to be responding to the shots for the first month, at least. But in recent weeks, despite increasing doses of the N-plate each week (which made me SOOO SICK, by the way) the numbers were not going up, or actually decreasing still. My hematologist recently decided to declare that he isn't sure I have ITP after all. After getting nine shots that are just to treat ITP? That wasn't so encouraging, but Hubs and I began to understand where the doctors are at - things aren't responding to their medications, and they are stumped. Period. I have become a guinea pig and they are shooting in the dark now with their ideas. They wanted me to get a full neck to pelvis CT scan last week, to look for "more significant" lymph nodes to biopsy, because they are now thinknig they may have "missed lymphoma" in September after taking out the node in my neck.
Phew. And that is the short, no-details version of this story that has been playing out for two months. All the while, we have had Thanksgiving and the Christmas season come along, and I've been trying to create some traditions and memories for our family especially our sweet Victory (who is 16 months old today!). It has been a testing time for us. I was SO SO sick from the shots, I have decided I can understand a little bit where chemo patients are at when they are so very sick. I had no desire to eat, I've lost ten or fifteen pounds (which I didn't really need to lose... Baggy skinny jeans aren't a good look!). I was more exhausted than ever before. I had terrible joint and muscle pain and aches. It was a messy time, and made worse because it took about a month to convince my doctor that the symptoms were definitely from the N-plate, because of a pattern we noticed, and I needed some medicine for nausea and the like.
Thankfully, the week they were finally listening to me, I started to feel better. But Hubs has missed so much work, we have gotten closer than ever before to not being able to pay our mortgage. We have been gifted groceries and gift cards from friends and family for food and gas. Our church family continues to be the most amazing body of people we've ever known. I am so proud to belong to a church that looks like the Church God desires and created to exist on this earth. Surrounded by our faith family, we have never felt alone or without hope. The best people on earth - I'm convinced!
Last week I had a short overnight from the ER to the medical floor of the hospital. My clinic called me right after we left the blood draws and said my platelets were down to 3,000, and I had to go to the ER because they were concerned about bleeding. When they took my labs at the hospital, their lab came back with a level of 13,000, and after a platelet transfusion (my first ever) that night they went down to 10,000. That's when the doctors really got confused, Lol!
I talked them into letting me go home the next evening, because watching for bleeding there and being bored, away from my daughter, and paying too much money, versus sitting at home where I want to be, watching for bleeding - it's a no brainer.
Since I have been home, God has sustained me every day. No serious bleeding, no ER. I have been learning so much about what it means to ask God for enough strength and sustenance for the day, and leaving it at that. It is much like Him providing manna for the people in desert. Just enough for the day, no more, no less. Wow, what a blessing that growth has been to my faith and my daily life, already.
Last week was a wonderful change of pace for us. I went to see a new doctor, a practitioner of alternative medicine, who is also a follower of Jesus. Wow, what a refreshing time it was, where we were empowered, encouraged, and given real, true information about what is standing between me and health. I am so thankful for the new path I have started from that appointment. I cancelled the CT scan which was going to be Wednesday. I cancelled my blood draw, and I cancelled my hem appointment. We all needed a break in our little family, and it was a good decision.
The main reason for cancelling the CT was radiation. Did you know one CT is worth 500 X-rays of radiation? Yuck!!! I cancelled the blood draw because my veins need a break. I had two IVs blow in the ER last week, my arms are a mess. And I saw no need for the appointment without labs to discuss. I think I will get my number checked next week, but I have so enjoyed the break from the hamster wheel of testing and results and bad reports and possible diagnoses. It can be really negative and sometimes you just need to get out of it!
I am just so grateful to be out of the hospital, to be with my family, to be able to go to church today and have gone out yesterday and made a Christmas time memory with my sweet Hubs and daughter. I'm going forward each day approaching it one day at a time, asking God to sustain and strengthen me enough to be able to do what He has for me at that time.
I believe healing is still ahead for me. Every day it has not happened yet, I am one day closer to the day it does happen. God is willing and able to heal today just like Jesus did in the New Testament -He's the same yesterday, today, and forever! I am looking forward to being healthy and strong again one day, yet in the meantime, I will not let this testing make me a bitter or negative person. I will become a better person from every challenge I walk through; that is a commitment I will never regret! And to choose joy in every moment that isn't so joyful on the surface - that is my gift to myself, my family, my friends........ Our greatest power is our power to choose. Thank You God that I get to choose my response to every situation in life!
So stay tuned in 2013... greater things are ahead for every one of us that pursues them!