I did the Mylotarg. It was 3 doses. One every other day. I had no complications. Just generally being very fatigued.
I got to get out before Christmas. Chastity and Amanda had already left. My parents and Paul and I had our own little Christmas. We used one of the Christmas Trees on the floor of the Hope Lodge and placed our presents around them. I also had a special visitor. Cheyanna had driven up to see me Christmas Eve and stayed for Christmas day for presents and for dinner. Dinner was delicious as usual and provided by the Hope Lodge. One of the local churches brought us in some little presents with a nice blanket, and some candies.
After Christmas was pretty uneventful. I had an appointment with my therapist. She asked me if I had three weeks to live (before we really know if the Mylotarg was working or not.) I told her I wanted to marry Paul, I wanted to be in my house, and I wanted to be with Yuna my doggie.
So we had a few questions concerning possibly getting married (I don’t want to leave him in a ton of debt) that she was going to look up for us. She also wrote a letter so Yuna could be an emotional support dog and I could take her with me to the Hope Lodge.
So after that, Paul and I began our search for engagement rings!
After we found our rings, December 31st we were officially engaged!
Before too long, I found myself back in the hospital with another infection. I was having a sore throat, this sore throat progressed until I couldn’t even swallow spit anymore. Everything was SO painful. Eventually I had to be on so much pain medication because of the pain my throat had caused that I was hallucinating. The issue I was experiencing this time was called Mucositis. I was getting all my nutrition from a white IV bag. I eventually got to the point where I could start swallowing a bit. I started to be able to swallow some pills and with that, I was released from the hospital and back to the Hope Lodge.
Here’s some information on it that should be easy to understand: https://en.wikipedia.org/wiki/Mucositis
I was still having a hard time eating, but it slowly got better and better. Finally we were going to need to decide what my next steps were going to be since my last treatment finally worked.
At first, I thought I was going to do a clinic trial of a cancer pill that I would take once a week or so. Then I found out that they misunderstood some of the qualifications for it, and I wasn’t qualified.
One thing I was qualified for was Ipilimumab. If you remember, we were going to do this a few months ago, before my cancer came back and I needed to do the chemo that failed.
Another NEW option, was a full match donor had shown up on the registry. A 50 year old woman from somewhere overseas.
We decided we’d start the Ippy and eventually look towards transplant. I also requested that they do a PET scan on me, because I was noticing lumps under my skin. They turned out to be from my Leukemia, but the Ippy had success with people who had tumors or cancer related masses.
January 25th, a Wednesday, I took my first dose of the Ippy. One of the large side effects is that flare my GVHD (Graft Vs Host Disease) and my goodness, the joint pain I had in my hips and knees was almost unbearable. It subsided a few days later in severity but I still have joint pain. Friday, I saw them for a follow up appointment. We decided that we’d meet every Wednesday. One treatment every three weeks. After that appointment they finally sent me home home!
So last week I went to the doctor and everything looks good with my blood work. When the nurse was changing the bandage on my PICC line, it started pulling out all by itself. It was out almost 10 cm and they needed to pull it. There was no way they were going to get so much back into my vein. So I’m also PICC free which is nice.
So this is brings us up to date. Tomorrow is Tuesday, and the day after is Wednesday, my check up day. February 15th is my next treatment date.
The 3rd was Paul and I’s three year anniversary. He cooked me a wonderful steak. It’s hard to believe though that two out of the three years we’ve been together we’ve had to go through all this cancer stuff. Hopefully soon we’ll be done, and we’ll have much longer than three years together.