This post is a bit overdue as I had planned on a post for the halfway mark in the radiation treatments. June 7th was number 10 of 20 but somehow it didn’t get done as there was a lot going on.
On May 30th, Radiation #4, I get a call from Linda, who represents the drug company Johnson and Johnson. She is a former ICU nurse of 20 years at HSC and then represented another drug company for around 10 years. She informs me that Dr. Shaffer has decided to treat my situation as Crohn’s and the recommendation is to use a biologic product called Stelera.
Linda explains a bit about the Stelara and the treatment process involving a clinic where nurses administer the biologic. Step one is to get an hour long IV infusion with follow up injections every eight weeks. I’ll be trained on how to do the injections at home during the 2nd clinic based session. We are receiving the Stelera on compassionate grounds and there will be no cost to us for this very expensive treatment. We are so thankful for our health care system as in other countries this could bankrupt you!
Nice! Things are moving forward on treating the PITA.
The following day, May 30, I get a call to schedule an appointment for the Pain Clinic at SBGH for June 1st as they have had a cancellation. Things are moving forward on multiple fronts, thank you Jesus!
On June 1st we meet Dr. Gingerich at SBGH CancerCare Pain Clinic. Normally, he only works with people who have cancer related pain but, prayers are getting answered as he makes an exception to see me. Three other doctors have made several urgent referrals to the pain clinic and we find out later that have decided my situation is not severe enough to warrant getting bumped up on the waiting list. I’d just need to wait, possibly months to years to get seen.
Dr. Gingerich and his nurse take a detailed medical history and after some discussion he decides on a more suitable medication for me. Dr. Gingerich will also follow up in a couple of weeks. A few days after trying the new medication, it seems like the dosage is a little low as I’m still in significant pain. Again I‘m able to call his nurse and explain my situation. She calls back within an hour and Dr. Gingerich increases the dosage. His goal is to have me pain free so I can once again function and have a life beyond endless pain interspersed only with medical appointments.
We also touch base with Dr Oladini, my family doctor who organizes a disability parking pass as I am struggling to walk the two blocks from the Parkade to CancerCare.
This new medication is a game changer! I feel much better using it and while there is still a need for additional medication to handle pain breakthroughs and still some constant discomfort, we seem to be on a very positive track. We are so thankful to have a pain management specialist on my growing team of doctors.
I’m able to attend our church in person and manage the sitting pretty well. Speaking of Oasis Church, my Life Group has been very supportive. Shirley has decided that my walking from the parkade to the CancerCare building for radiation treatments is too far so she is driving me, waiting the 10-15 minutes and driving me home. Well, on Tuesday June 6th, she has a conflict and can’t drive me. However, David from my Life Group steps up and picks me up along with a side trip to get the disability parking pass. We have a great conversation on the drive there and back home.
Back to the PITA, the testing seems to never end with a capsule endoscopy to investigate the small bowel to rule out any involvement in that area. We find this out driving home from a radiation treatment and they propose June 19th. When I explain that I have a radiation treatment that day they don’t think it will be possible. The next available date is July 19th. When you’re already on the edge, this new test and scheduling issue is very upsetting. It takes me a while to calm down and let it go.
So here we are today, Tuesday June 13th, Radiation #14 and as I arrive at CancerCare I get a phone call from the clinic that is administering the Stelara and the date for the IV infusion is set for June 26 as there’s is a 4 day waiting period after radiation is completed.
In spite of all these challenges, God has been faithful and so many prayers have been answered.
And by the way, Shirley’s angel is actually named Eilie not Kylee and Mandy is friends with her Mom. Mandy knows the family who lives in Niverville and sent a picture saying is this your angel? What a small world and what a blessing that prayer was on a day when Shirley was running out of hope and wondering how she would keep on being there for me.
Thanks to each of you for your prayers and continued support, it is so appreciated!
