Garry Stewart

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Busy Week

A lot of appointments during the week of Sept 11-15. Several were bounced into this week to free up time to go to the lake for longer periods.

Monday September 10th

It’s up early to get blood work done at St. Boniface for an afternoon meeting with the oncologist. The guy taking blood was a student and I think he was a little nervous as his hands were shaking as he labeled the tubes. Thankfully he was steady as he inserted the needle. Things were good until the last tube when the flow stopped. He called over the senior technician who fished around with the needle a bit and got the flow going to finish the collection.

In the afternoon I saw Kelly, the clinic nurse, Dr. Moltzan and the new assistant to Dr. Moltzan. We reviewed my recent medical history and the blood work was “acceptable”, counts are still on the low side but generally my immune system is not too bad. There will be a PET scan on October 17th and a review meeting shortly after that to get the news on the suspected arm pit lymphoma and the effectiveness of the radiation. The Grastofil injections have stopped but the IVIG infusions will continue for six treatments. The next is on October 5th.

For those of you like me who like numbers and charts here you go.

A bit hard to see but HgB is 115 and PLT at 112. Low but going the right direction
One normal (ANC) and one low (WBC)

Tuesday September 11th

Going to the dentist is not exactly a “Journey” item but the Journey has caused several delays in getting this dental work so here we are squeezing this appointment in with the other more medical items. Hope you don’t mind. 😊

8am for the dental implant that takes exactly one hour as promised along with the mega-payment $$$. Recovery is easy with no complications and a check up to remove the stitches in two weeks.

Later in the morning we’re heading over to St. Boniface to meet with the colorectal surgeon. We’re in the car minutes away from our pre-paid parking spot behind 400 Tache and his assistant calls to cancel the appointment. He has been delayed in surgery and can’t make it. We re-route to Costco for some shopping and then back home. He calls later in the day and we discuss things but it’s a little pointless without a physical exam. We send pictures and don’t hear back. We will schedule another appointment.

The evening and night is consumed by the prep for tomorrow’s activity. This keeps me close to the washroom.

Wednesday September 12th

It’s capsule endoscopy day one, 8am at the HSC. I swallow the pill camera, get the recording gear strapped on and leave.

Swallow this…

… strap this on around your waist…

… and plug this in and you’re good to go!

Thursday September 13th

I’m back at HSC for 8am just to return the equipment. And no, I don’t have to return the pill camera . 🤣

Friday September 14th

We see my GI guy for the first time in person. We’ve had several phone calls and even started the Stelara drug all without physical contact. It seems strange to me but he’s not concerned and this I guess is the new “normal”. He reviews my case to date and then I ask several questions and the responses all seem to start with “Well, that’s a good question.”. “

“Do I have Crohn’s?”. “We’ll, that’s a good question.”.
“How will I know if Stelara is working?”. “We’ll, that’s a good question.”.

There seem to be quite a few unknows and vagaries in my situation from a diagnosis and treatment perspective. However, the pain is under good control and the perianal wound and infections are improving so perhaps the Stelara is working, it’s a good question.

So, that was my medical week. For the next while I don’t have too many appointments so we’re going to enjoy some normal times at the lake.

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Stelara

The lymphoma is taking a bit of a back seat for a while. A PET scan is scheduled for October 17th to see the results of the radiation treatments. Today, I’m getting the initial Stelara treatment via an IV and from here on out, every 8 weeks, I’ll receive syringes pre-loaded with Stelara for me to inject at home.

Today’s IV is planned to take one hour but from the rate I’m seeing it might take longer. The infusion site is in a strip mall office building and has the vibe of a converted apartment. Two nurses are running the show and everyone seems very relaxed, except me.

For some reason I’m a bit apprehensive about this treatment. I’m not sure why after all the meds I’ve had stuffed in my body over the last several years. Perhaps it’s the lack of clarity around the diagnosis that I have Crohn’s, It seems like the doctors have ruled out most other things and Crohn’s is what’s left, less than a positive diagnosis in my opinion.

On the more mundane, starting the IV was a little interesting. Lately, my veins have been less than cooperative and quite a few nurses had significant problems with starting an IV. Today was no exception. After poking around quite a bit on attempt #1 on my forearm attempt #2 was on the back of my hand. This attempt struck pay dirt immediately and the nurse was not quite ready. The IV line was not attached to the needle and blood was rolling down my hand, a first for me. The flood was quickly contained and Stelara was flowing in. No turning back now,

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Looking Up

There have been two blood tests to see how my various cell counts are doing and the news is good, as the counts are up on both August 8 and 21.

Both hemoglobin and platelets are getting closer to the normal range.

I can feel the improvement in going up the stairs at the lake. Two weeks ago I had to stop several times on the way up. Now I can go up from the dock to the driveway without stoping, a big improvement.

ANC (Absolute Neutrophil Count) WBC (White Blood Count)

All these numbers are currently being helped along by injections of Grastofil twice a week and IVIG every four weeks. Shortly, I’ll stop these “helpers” and find out if my bone marrow can maintain these numbers without any assistance.

Once I can maintain numbers near or in the normal range on my own, the biologic Stelara to deal with the Crohns will be administered.

Life is returning to normal with time spent at the lake along with several outings to attend two memorial services and a 50th wedding anniversary of longtime friends this past week.

We are so very thankful for continuing improvement and appreciate all of your support and encouragement.

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Week and Weak

It’s been a week at home and I’m learning how weak a month in hospital can make you!

The first week at home has been great and I‘m enjoying all the comforts of home and the freedom of the bigger space. I’ve even gone solo on a couple of walks and driving the car too!

Being weak in the legs was a bigger thing than I expected. It’s really noticeable on the stairs and squatting down and then trying to get back up is really hard without a little push or pull to get going. Seems like it will take some time to build back up.

I may be out of the hospital but the week was not without a couple of return visits. First up was Oncology/Hematology and then later in the week was Dr Gingerich at the Pain Management Clinic.

Monday’s oncology/hematology appointment was to review the blood work which resulted in some additional medications. As the numbers continue a slow slide in the wrong direction, the decision is made to give my immune system a bit of help with some Grastofil injections twice a week. A bit of Deja vu as I’ve done the same injections back in 2018 with the first go round with chemotherapy.

The next medication is IVIG, again something I recently had in hospital and back in 2018 with the first treatment of the lymphoma. Since this is administered via IV it’s a trip to the hospital for several hours as IVIG is slowly administered to watch for any side effects. If there are no issues the infusion rate is increased every 15 minutes. The primary goal with IVIG is to increase my platelet count which helps to manage blood clotting and helps my overall immune system as well.

Platelets and Hemoglobin both need some help

The Thursday appointment at the pain management clinic went well. My pain is well controlled now at a 0-1 on a scale of 0-10 so that is a tremendous improvement. The plan is to maintain the current level of Fentanyl for two weeks and then start a very slow downward taper and see how that goes.

Next week on August 2nd it’s a visit with my GP. The hospital set this up when I was discharged to bring him up to speed on everything that’s happened during my hospital stay.

Speaking of what happened during my hospital stay, I managed to get some additional infections probably due to my low blood counts, my almost non-existent immune system and the proximity to the perianal abscess/fistulas which is not exactly a sterile area. This resulted in the wound care nurse specialist getting involved which lead to daily wound care to work towards clearing up these infections.

Once we left the hospital, Home Care nurses are providing the on-going wound care as well as the associated supplies. Shirley has been learning the wound care process both in hospital and from the home care nurses and has become quite proficient. At this point Shirley feels capable of looking after the wound care which makes the process much more manageable especially as we plan on going to the lake soon.

I’m happy to report that I’m doing so much better and we are looking forward to some lake time with our family!

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The Eagle Has Landed

After a brief 33 day stay in the hospital, I’m back home and the journey continues.

It is so good to be back at home and resume a more normal life with Shirley.

I’ll be closely followed by my oncologist/hematologist Dr Moltzan.

In fact I have my first outpatient appointment on Monday. Just a few minutes ago they took extra blood for more tests beyond the standard 6am blood work.

In addition an appointment has been arranged with my GP Dr Oladini to keep him in the loop and have him as the quarterback, coordinating all the specialists on my case.

Home care to help manage the wound care has also been arranged and I have already received supplies in the hospital and our first home care visit is Sunday.

We are so thankful for the excellent care that I’ve received from all the hospital staff including the health care aides who kept my room clean and brought meals, the nurses who execute the bulk of my care, and the many specialists who consulted on my complex case.

We are extremely thankful for all who prayed, texted, emailed, visited, and supported Shirley and I during this part of our journey.

Most importantly we thank the Lord for His supernatural healing power working in tandem with the care provided by our medical team to bring us to my home coming!

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Transitions, Numbers and More

How Long?

“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.

Continue reading “Transitions, Numbers and More”
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Extended Stay

I’ve posted about the Hotel California effect before and today it seems to be in full force once again.

While all the bloodwork numbers and test results continue to be improving, there has been a decision by the infection control group to change the IV antibiotic to an even more specific product. However, the current plan is to run this IV for 10 days. It seems I’ll be here for a while.

I’m of two minds on this, one is the hospital is a safe cocoon and everything I might need is here. Example, this morning one of the senior doctors thought my left leg was swollen and there was possibility of a blood clot. In about an hour I’d had an ultrasound of the leg which showed no problems.

The other side is that I’ve been here a long time now, and a jail break for home is starting to look pretty good

Did somebody say numbers?

I’m “normal!”
More in the normal zone
Still needs some work

Side Note:: I’m amazingly tired all the time. If I hold still too long, lose focus on what I’ m doing or close my eyes, I’m asleep instantly. Seems crazy but I guess this is the body repairing itself.

Thanks to all who are on the journey with us. Your texts, emails, and prayers are very much appreciated, ❤️

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Numbers are back and so am I

Well… maybe for a post or two. As you know I track a few bloodwork numbers and things have been pretty low since bring admitted but over the last two days thing have been trending up, which is very good news. Not to mention my blood pressure is coming out of the danger zone. Time for some pictures, a thousand words right?

Improving White Blood Cells
Hemoglobin and Platelets still not good
Neutrophils – Still in the tank

Thats it for me, thanks for dropping by.

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New Day, New Challenges

It seems every day has a lot going on.

Last evening Garry received a blood transfusion along with a Intravenous Immunoglobulin (IVIG). He had a reaction to the IVIG and spiked a temperature. In addition to that he was experiencing some chest pain, so an EKG, bloodwork, and a nitro patch were given.
He also was having trouble catching his breath, and the nurse suggested that he might be experiencing a panic attack. Due to all of this, there was a lot of people and a lot of activity in his room throughout the night. When I visited him today, he was quite tired from all of the above and was a bit discouraged.

His sister Gail will be arriving tomorrow from North Saanich BC to see her brother. We haven’t seen Gail for the last two years and it will be wonderful to see her again.

We still don’t have the finalized bone marrow biopsy results but I am planning on being at the hospital at 8:30 AM tomorrow and hope to catch the doctors while they are on their rounds.

It seems every day has some new challenges, but in other ways, Garry is improving day by day. We still have no idea of when he might be coming home, as they need to ensure that he is not dealing with an ongoing infection given his compromised immune status

We have been so thankful for the wonderful care Garry has received this past week.

I hope we are not overwhelming you with too much data, but Garry (and Shirley too) has found that keeping the blog up-to-date with the happenings has been very helpful to keep track of everything.

Thanks for standing with us, and for all your love, support, and prayers.

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Overdue

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!