I always forget that the day after chemo always kicks my butt. Yesterday I had an eight hour infusion of Rituxin. It’s not as harsh as some chemos, as it doesn’t take my hair. However, it’s still pumping poison into my body. My immune system is still jeaorodized (on purpose, since mine seems to want to kill me), and I run risks like kidney failure and getting a few different types of cancer. Yet, with all those risky possible side effects, it’s still better for me to have the chemo to keep the Wegener’s at bay. This was my third round of chemo infusions. I hate to really call this a round as it was just one, and possibly two infusions but still it is what it is.
The first found was in May/June of 2013. I was living in Odessa Texas, and all our family lived in Oregon. My daughter and grenade daughter flew down to help out, and then my mom came for four weeks after that. Travis was busy working, and my trachea was still recouping from the first dilation. We couldn’t find an infusion center near us that we trusted. Since this is a rare disease, not many doctors know what they are doing. My Otolaryngologist wanted me to get the infusion ASAP so I’d live. The only Rheumatologist that could get me in right away was a jackass. At first we thought Dr Khandawal was brilliant. He spent four hours with me during my first appointment, and was very thorough. However, we came to find that he was a bit full of himself. He had no idea what Wegener’s was. I begged him to talk to my other doctors, but he wouldn’t. He did call the Mayo clinic to learn a bit about Wegener’s, and when he finally agreed to having me take the infusions, he had no idea how to give them. I am someone who likes to research everything. I Had read up on Wegener’s, rituxan, and other meds that treat it. I joined groups on Facebook with other people that have Wegener’s. I talked to them about what worked, what didn’t, and what to expect. I was blown away when Dr. Khandawals nurse called to schedule my appointment and told me that my infusion would just take twenty minutes. Um, the first infusion takes at least 7-8 hours! If they’d have pumped that into me in 20 minutes, I’d have been dead. I instantly fired him. I called my Otolaryngologist in Dallas in tears. His nurse was amazing. She got me into see a Rheumatologist a tUniversity of Texas Southwestern that week. He scheduled my infusion, and for the next four weeks, we drove six hours to Dallas each Wednesday, I had a my infusion all day Thursdady, and then we drove back six hours on Friday. UTSW was great. They had individual rooms for infusions. It was peaceful. We even got a hotel across the street at the Holiday Inn, with medical rates. They were so good to us.
After my infusions, I didn’t see my Rheumatologist until August. He ran a blood panel and decided to treat me with Imuran, a pill form of chemo.ni stayed on this for the next year. During this year, we moved back to Idaho, and then Oregon. Getting set up with doctors is a nightmare for me. I have all my medical. Records from the past four years I a three ring binder that I take to my appointments. This was so vital before we settled in at oregon Health and Science University. It is so nice to have all my doctors at one big hospital, and they all communicate so well. Prior to getting set up with me new team, going to the doctor gave me a horrible anxiety attack. Wegener’s is pretty rare, or more so are rely diagnosed that so many doctors don’t know what it is. They may have heard of it on House or in medical school, but that is it. Every time I’d have to go to the ER, I’d have to tell them what to do. I’d have to spell out my disease, and sound it out slowly. Gran-you-low-ma-tosis. When I first got to OHSU, I was told that I shouldn’t live further than 30 minutes from their ER because Wegener’s is so serious and deadly that being to far, or going to a small ER can be life or death.
From March to August of 2014, I was in medical limbo. I didn’t have a doctor in Oregon. This was so scary for me. Luckily my doctors in Texas had given me enough refills, but I was having more breathing issues and needed to be seen. I finally got in with my favorite doctor and she facilitated getting me in with my current team. She is amazing and so helpful. She referred me to my new Rheumatolgist, and Otolaryngologist and so many others. My Rheymy decided that the Imuran wasn’t working and so she scheduledmore infusions. In November of 2914, I have four more weeks of infusions. It was nice to be closer to home. It’s a room with six chairs and although it’s notprivate, you meet some neat people. The nurses are great, which is the most important to me. From now on I will have one or two infusions every six months to keep Wegener’s at bay. I don’t mind it really. I can handle all the poking and prodding, but the emotional aspect can take a toll.
I freak out a few days before because I start thinking about pumping prison into my body. I know that since I’ve had it before, the chances of a instant bad reaction is not likely. Thank God. However, I know it can cause lymophomas, and kidney failure. I’m just not ready to die. I always have a reaction during the infusion, so they have to stop it, flush it, give me Benadryl in the IV, then restart it slowly and work up to a higher dose. This last time we decided to take it slow since we knew I’d have a reaction. It was especially nice this time around because it’s summer, and I didn’t have to rush home to get Kenna. She stayed with ours ear friends from our cheer family for the day (I love our cheer family!) I knew she was fine, so I agreed to not push it. The reactions consist of sever back and abdominal cramping, heartburn, headache, nausea, and a scratchy throat. The back pain, and a headache last for days. The back pain is like no other. It feels like someone is hitting my bones with a chisel and hammer. I wake myself up whimpering in the night with pain.
So today I had my chemo hangover. I stayed in bed all day. I didn’t even turn the tv on because it was just to much noise. Since I was pumped full of fluids yesterday, I did have to get up to pee a ton, but other than that, I just laid there. I’m always reminding myself to not be so hard on myself because I feel guilty laying in bed all day. The day after chemo is one day I really give myself a break. Today Kenna had cheer, so I did get up, get showered, and got her and another cheerleader to cheer. I’m sitting at the library writing this. It’s cool, and quiet. However, my back is killing me. I’m going to go get my prescriptions, all nine of them, and pick up something easy for dinner. After all, life must go on.
Thank you for taking the time to read this. I don’t do it for pity. I want to educate people. It also is nice to get this all off my chest. Like I said before, it’s better than therapy!
Chronically Susan 