To bring you up to date the drug study with Pembrolizumab (yeah you remember that) has been going very well. I've done 2 infusions so far and my upcoming one has been push back a week. I'll be in the study for 24 weeks going for infusions once every 3 weeks. I'll have a couple of PET scans and CT scans during this time to monitor my body's response to the treatment.
My most recent PET scan came back clean with no signs of cancer. My Oncologist was telling me that if I continue to make great progress and have these same awesome responses to the treatments I could be declared in full remission in 18-24 months. I'll jump for joy in 18-24 months.
So my day +45 after Transplant was 2-25-16. My bloods have been great and my WBC, RBC, Platelets, & Nutrafils have all been on the rise. I took a chance on the 2-13-16 during the deep freeze weekend and helped my Mother-in-law with a broken water pipe in the wall. The kitchen ceiling was a total loss and had to come down and be replaced. I was able to help out and only get a couple of very minor scratches.
I went back to work on 2-25-16. There were a number of people retiring by the end of the month and if I wasn't in to see them I'd probably lose the opportunity to wish them well and thank them for all they've done for me over the years.
I went back to the gym on 2-29-16 and got my ass handed right back to me everyday. I was feeling good about myself until I couldn't last through the first 10 minutes and struggled through the remaining 50 minutes, but I didn't quit.
This takes us to 3-5-16. We had about 2-3 inches of snow over night Friday into Saturday. I used the snowblower because that's why I have one. Just being out in the cold breathing in the cold air, even though I was bundled up was all it took and was the icing on the cake. I think that I wore myself out in the gym and exposed myself to too much in too short of a time. That Saturday night we went out for a bowl of soup and everything was looking fine with the exception of a few sniffles.
Sunday I was feeling run down and my temperature was on the rise. At 100.4 I called the doctors office to find out what they wanted me to do if I ran a fever over 100.5 like when I was in the hospital. I spoke with someone on the Oncology team and they wanted to get a True temperature without the OTCs I was taking reducing the fever. My fever went up to 103.8 and they would have admitted me that Sunday, but would only have given me IV fluids and they would monitor me while my fever broke. We agreed to let me break my fever at home. It took 3 days for the fever to stay broken. It would drop to 100. and shoot right back up the next day. It bounced between 99.8 and 103.something until Tuesday night when it finally broke for good.
Wednesday I was feeling better from the fever, but feeling worse from the cold that I thought I had. I called the doctor to see if I could get a chest X-ray in Danvers to see if there was fluid in my lungs. I went into work on Thursday and Friday feeling pretty beat up. I was able to get in on Friday for an X-ray and blood work that determined that I had some kind of infection and they gave me some antibiotics and an inhaler.
Sunday, the doctor called me and told me that my blood work came back positive for bacteria and to get to the ER right away. After checking into the ER, they did another set of culture samples, blood work and review of my chest X-ray and determined that I had H1N1 (swine flu), Pneumonia and bacteria in my blood which they believe got there from the Pneumonia in my lungs.
I was admitted right away, which was a surprise because I thought I was going to get a stronger antibiotic and be on my way. Not the case! That's how little my immune system could handle. I did great breaking the fever, but everything all added up just kicked the shit out of me. I stayed in the hospital for 4 days while they treated the Flu and Pneumonia with the right antibiotics. They did an ultrasound of my heart to verify if the bacteria and Pneumonia had done any damage.
I was discharged on 3-16-16 with a PICC line to administer IV antibiotics on my own at home for the next 11 days. I have a VNA that comes by the house to check up on me everyday to see how I'm doing and change the PICC dressing if needed and help me with the medicine if needed. I'm taking 20mls of Cefazolin 3 times a day to clear out the Pneumonia and Tamiflu to clear out the H1N1.
I was really concerned about the bacteria in my blood. That scared me the most. I've just gone through all these treatments and I'm going to take myself out from a common cold that went haywire.
I made a little video showing just how simple and painless the IV administration is. Thanks to the Infectious Disease Team at MGH determining that I can successfully manage this at home and the right Care Team from New England Life Care providing the IV training and VNAs for me I can finish treating myself at home.
It's just another fight, that's all it is. I had no idea I had H1N1, let alone Pneumonia and its still too early for me to get a flu shot. I won't get my baby immunization shots until sometime this July so I've still got some challenges ahead of me. If I can't handle what lies ahead I may as well go and buy the nails for my coffin myself.
It's not always going to go my way and I'm going to get my ass handed back to me sometimes. How well I handle it and rebound from those times can map out both my success and failure on this journey. Today 3-17-16 is only Day +66 after Transplant.
- Anthony
