For those of you who have a friend in your life that has your back through thick and thin, thinks of things that you need that you don’t think of, is ready to jump on your bandwagon no matter what crazy hair brain idea you have and is ready to be your wingman or in this case “wingwoman” on anything, even if it commits her into volunteer situations for years to come… then you have a “Shari”.
My friend Shari Neiswanger is like a sister to me (and of course I am already blessed with 2 amazing sisters), but we missed the whole period of time where we fought and bickered with each other. She designed these fun t-shirts as a fundraiser for us to help pay some expenses associated with this crazy cancer stuff and more importantly to band us together as we stand up to cancer together. I have been chomping at the bit to get ours and we finally got them this week…. thank you Shari!! Even one of my nurses here in Tucson bought one and was wearing it this week when I had to go in! What a boost to my mood on a day when I wasn’t feeling very “perky”.
These past several days I have been hitting my “low” (aka nadir) post chemo. Each progressive round is harder on my body, making my counts (hemoglobin – the red blood cells that carry oxygen to the rest of the body, platelets – the blood clotters, and neutrophils – the infection fighting white blood cells) go way down and that makes me tired and at risk for infection.
This Monday, I went in to check my counts and had been experiencing 3 days of fevers around 100. I was neutropenic (when neutrophil count is <1500, mine was 110). My hemoglobin was only 7.7, borderline needing blood. But we decided that I needed to get on antibiotics, so I have been going in everyday this week for IV antibiotics and waiting on the blood. At Mayo clinic, they automatically order 2 units of blood if you go below 7. But more blood transfusions are not good if you are going to have a bone marrow (aka Stem cell) transplant in the future. This could potentially still be in my future.
But aside from my fevers and not feeling so great this week, I am celebrating!!! I officially have a slot for the CAR-T clinical trial at Stanford on August 22 (that also happens to be Kaitlyn’s 16th birthday). I cannot tell you the depth of my relief when I got the call from Dr. Miklos telling me the good news!
Can I get an AMEN???
I still have to get through my PET scan tomorrow (Friday) showing stable or progressive disease. Dr. Miklos feels pretty confidently that won’t be problem. It’s a little unsettling to think that we are still not a “shoo in” for the slot, but this is where I just need to have faith that the results will be exactly what we need them to be. I think we should know something by the afternoon.
If all goes well, I will fly out to Palo Alto on Thursday, Aug 17, be in clinic on the 18th and have a catheter put in on August 21. They will collect T-cells on August 22 and release me for a couple of weeks. I’ll go back the week after Labor Day for 3 days of chemo, 2 days of rest, and then they will inject the “SUPER T-cells” ( envision the new T-cells with big muscles and a super hero cape) back into me. I love this cartoon that explains the process in terms that people like me can understand:
I will be hospitalized for the first week at least as my body deals with side effects from the “cytokine storm”. They have told me that I will feel like I am having a bad case of the flu and that first 7 days they will be watching me very closely for signs of neurotoxicity which can be scary.
But I am hopeful that this is His plan and that after all this, I could be completely CANCER FREE by the end of September.
WOW. CANCER FREE… that sounds so wonderful.
Please be praying for tomorrow to go well, no shrinkage, but steady disease is what we want. Also if you could be praying for my body to be strengthened to fight off whatever it is that is making me have fevers.
I am seeing a light at the end of this tunnel and I am so excited to be sharing the journey with you.
“Blessed are those who trust in the Lord and have made the Lord their hope and confidence.” Jeremiah 17:7