It is actually closer to the seventh month mark but we were checking out some other issues and that set us a little further behind... or ahead, depending on how you look at it. I went to Cleveland with a lot of anxiety since quite honestly, I had not been feeling all that well the last couple of months. But, I have good news. No rejection.
I saw a hematologist about the blood issues and for now I am on a wait and see what happens basis. They may take me off the Valcyte at the one year mark but for now they won't chance that. So, I must continue the Neupogen injections. So, until then, I will have to suffer through the side effects and I will just have to deal with them the best I can. They made a few adjustments to my medicines and will continue to do so as needed. The whole thing is a delicate balance. I'm already at half of the suggested dose of Valcyte. My donor was positive for CMV, while I was negative. Take the Valcyte away and I'm at risk for infection. Being that I'm immuno-suppressed, getting any infection is bad. Of course, it can be treated... but, my body is not very strong right now. It all makes me nervous.
The migraine treatment is not going as well as I had hoped. Thankfully I am staying out of the ER. But, I haven't had any luck weaning off the triptans. The preventative has not kicked in yet even though I am now at the full dose. I'm still waiting for another miracle. The insurance company constantly fights me about the dosage of the triptans, so I would really like something to happen soon. I'm afraid that one of these days I may not have enough medication. I had a pharmacist tell me I may need to "white knuckle it through a few days." Obviously he has never had a migraine. Sure. Try vomiting for 24 hours straight and not be able to take your life-saving anti-rejection medications. Then talk to me about white knuckles.
I was on a mission this trip to Cleveland and with help from a couple of friends I was able to pull it off. Thankfully we didn't run into any problems with traffic or weather or have any extra long tests, procedures, or ER trips beyond some additional bloodwork. In all of my trips to Cleveland I had always been too sick and too hurried to see or do anything. I had never been anywhere other than to the clinic or the hotel. I knew about all the great places in Cleveland but my adventures included stepping out a few times to buy slippers at a department store and to the pharmacy to pick up prescriptions. But this time changed all that.
First thing on our to-do list: we went shopping. We picked up a bag of toys for the Cleveland Clinic Children's Hospital in memory of our dear friend who died last year. We also put together a a bag of snack items for families staying at the Ronald McDonald House in Cleveland. We delivered the items when I was finished with my appointments.
Then we visited the Rock and Roll Hall of Fame. We walked halls of memorabilia taking us through a timeline of history from the birth of rock through the present day. It was interesting seeing stage costumes, props, and instruments of the legends. I will have to admit that after comparing the 1980s heavy metal case, the music of our formative years, with all the other decades, I am surprised we turned out okay.
I lost more than two years of my life. I am still picking up the pieces. It is still harder for me to do normal things and it takes longer for me to do anything. I lost a lot of muscle strength while I was ill. I am doing pulmonary rehab and working on some strength training and cardio with supervision. But with the injections I still have a lot of joint and bone pain so I am limited. It is expected. I have weird side effects from the meds. I deal with tremors, some neuropathy, tingling, headaches, aches, moods. It is the new me. I cannot do what I used to do. I feel different. I have to be different obviously because of various things. It is okay. It is better than the alternative. It is not easy. But, I am okay with that.
This week was amazing. It was on a roller coaster of pain and emotion and sheer happiness. I was among the most sick, the healthiest, those in pain, and those who were happy. I was scared and delighted. I smiled, I cried, I laughed with old friends, and laughed with new friends. I was thankful. I came home to my family, with no rejection, again...
