“How long has this been going on?” A song by Ace, a one hit wonder comes to mind these days. If you give it a listen it’s quite likely you will recognize the song. How long has it been going on? Well, today is day 31! Yikes, my longest hospital stay ever.
The current plan is to go home this Friday July 21, 2023 after a 33 day hospital stay. There will be “close” outpatient follow-up with the CancerCare group. They will provide the Oncology and Hematology care which is the main focus of my “issues”. “Close” has not been defined yet, but at a minimum, I think it will be weekly blood work, possible Grastofil injections, and a checkpoint visit.
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!
It been a busy few days starting with Shirley meeting an angel, and then a couple of days of miraculous answers to prayer! Pretty exciting eh?
The Angel
We are still in awe of the goodness and faithfulness of God to send our very own angel to encourage Shirley on Monday morning. She was struggling with seeing me in overwhelming and seemingly never ending pain. To have Kylee reassure us that God hears us, that He sees us, that He is with us, and that He is our Healer was such an encouragement to both of us. She specifically prayed for hope and strength for Shirley and healing for me.
This was not some coincidence, as some might think, but was our loving, Heavenly Father reassuring us that we can lean on and depend on Him.
We had a phone consultation with Dr. Seth Shaffer, the Crohn”s GI specialist this past Friday.
The phone call lasted about 45 minutes and started with me giving a detailed history from my perspective of everything that has lead up to this point. He indicated that he’s had several discussions with Dr Hyun the Colo-rectal surgeon and has reviewed all the scans and biopsy results.
After all the review,, he is still not sure why this is happening or exactly what “it” is. The consensus is that it is Crohn’s, mainly because perianal abscesses and fistulas are associated with Crohn’s but it’s unusual to not to have bowel issues as well. Apparently only 5% of people have Crohn’s without any bowel issues.
Again, all the biopsies are reviewed and don’t show cancer, a good thing, just “non-specific inflammation”
To say that it’s been an eventful couple of weeks would be an understatement. From dark and stormy days that never seemed to end, to a much brighter day.
The Journey blog needed a few posts prior to today but I just was not up to it. So, Shirley has kept some folks up to date via email so there will be some overlap on the content but it will be a bit more from my viewpoint.
The PITA Issue
With the perianal abscesses and fistulas, now referred to collectively as PITA, there has been increasing pain over several months which have forced me to take ever increasing amounts of Hydromorphone to get any sort of relief. I was watching the clock to see when I could take my next dose, and life revolved around pain management. On April 18th, in conjunction with my GP, I added some long acting Hydromorphone to the mix twice a day. This was still supplemented with fast acting Hydromorphone 3-4 times a day to cope with pain flair ups. On the 20th the 2x daily amount was increased and again on the 25th when we had a crisis meeting with the colorectal surgeon.
Since the last post there has been a fair bit of activity on both the cancer and PITA front.
Shortly after our appointment with the oncologist we received an appointment for a CT scan on May 4th with a follow up oncology appointment to review the findings on May 8th. At this appointment we should know if radiation is a viable treatment.
Today, April 25, 2023, we had an appointment with our Colo-rectal surgeon to discuss my current symptoms, pain management and the status of the gastroenterologist (GI) consult.
After discussing the symptoms along with another physical examination his comment was that it’s no worse, but is also not improving. His recommendation at this point is to perform an outpatient surgery to help drain one of the abscesses/fistula by placing a seton. While he’s there a scope examination and further biopsies will be performed. This procedure will take place next Tuesday May 2, 2023 at 7:45 a.m.
For pain management there has been an increased dosage in long acting Hydromorphone, some fast acting Hydromorphone for breakthrough pain management and some serious antibiotics.
For the GI consultation my case will be reviewed on May 18, 2023 during GI grand rounds where the IBD Gastroenterologist Dr. Seth Schaffer, will present my case to all the other GI specialists to get the best thinking on my situation. Dr. Schaffer will call me within the week following to discuss the next steps. These steps are likely to include a capsule endoscopy and if biologics are indicated and which one(s) would be best to treat my situation.
Unfortunately, the PITA + Lymphoma = complications. Biologics to treat the PITA are known to aggravate lymphoma. 😕 Treating the lymphoma with chemo also causes problems with PITA treatments. Things are getting complicated.
One of the better treatment paths is to get the approval for radiation of the lymphoma, for it to work and then treat the PITA with biologics and have them work as well. 🙏
It’s all more than a little overwhelming but we have a big God who is with us at all times and in all things. Plus we have a wonderful support system of family near and far, our Oasis church family with special Life Group friends, and our special friends Chris and Elaine that we’ve done a lot of life with, over 40+ years.
No, not the the bread. This is my acronym for something else entirely.
In my last post I indicated that there was another part of my journey that is fast becoming interrelated with the original intent of the blog which was to journal my journey through the lymphoma cancer diagnosis. So, I’ve decided to expand the purpose of the blog to incorporate this rather dedicated and sensitive issue (on several levels) into the blog. Going forward I may use my acronym, PITA, (Pain In The A**) to encompass the perianal abscesses, fistulas and anything else related to this issue. It sounds a lot less clinical.
There may be some back dated blog posts as the PITA issue started in the summer/fall of 2022 and I’ll need to use my memory and whatever I wrote in my paper journal to re-create the timeline. Feel free to ignore. 😊
In summary, the blog has taken on an expanded vision to included other, mainly medical, components of my journey through life.
