I’m starting this post on 2023/11/06 and it’s a collection of events and thoughts that on their own may not warrant an immediate post which causes a few subscribers to get an email. However, there are some things I’d just like to record for posterity that are probably are of limited interest. At some point in the future I’ll publish it but for now it will just hang around as a draft.
2023/11/02 – IVIG
Into St. Boniface CancerCare for the monthly IVIG treatment. Things go smoothly and I’m in the chair for about two and one half hours.
2023/11/03 – Stelara Injection
It’s been 8 weeks since the start of the Stelara treatments with the IV infusion and now it’s a do it yourself program at home. After a couple of phone calls to set up the delivery to the house a 2′ square box arrives with the injection needle.
The box is heavily insulated and ice packed. The product needs to be refrigerated and since it arrived over a week early it gets popped into the fridge.
The day arrives and much like injecting the Grastofil that I’ve done before a few times the procedure is similar, in the belly and 2″ away from the button and stab away. Pretty uneventful and no negative reactions. To date I can’t determine if the Stelara is helping but the advise is that it’s a slow build and effects might take 2-6 months.
Into St. Boniface to see Dr. Hyun for a look see on the perianal issue. Hopefully, I’ll get a copy of the capsule endoscopy for my records. While I’m here I’ll get some blood work done for another upcoming checkup with the oncologist.
2023/11/27 – MPI scan: Part 1
A Myocardial Perfusion Imaging (MPI) scan is a test that looks at the blood flow to the heart. It consists of two parts: A rest test (today) and stress test(tomorrow). It is sometimes called a MIBI scan.
Shirley and I met with the oncologist this morning and it was all good news.
Over the last few weeks there has been some testing to see if there is any cancer activity in my body and how I responded to the radiation treatment in June. There was blood work, a CT scan of my neck, chest, abdomen and pelvis plus a PET scan from my neck to mid-thigh.
Then there was the waiting. I must admit I was quite a bit more anxious about today’s meeting after all the other non-cancer medical issues I’ve experienced over the last year on top of the lymphoma reoccurrence . With the testing and the waiting it felt like my life was slowly being put on pause awaiting this result.
The CT results were clear, not detecting any lymphoma. Similarly, the PET scan was clear in the left armpit where previously there had been suspected lymphoma activity. As the report put it the issue had been “resolved”.
After the meeting it felt like the play button had been pressed and I seem to have the desire and motivation to get on with living a fuller life.
The blood work was a bit of up and down. Some indicators had improved and some dipped a bit. The doctor wasn’t concerned and no immediate treatment is planned. In fact while I’ll still have the monthly IVIG treatments there is nothing else planned except monthly bloodwork and a checkup in three months.
Of course things wouldn’t be complete without some numbers and graphs.
White blood cell count took a bit of a dip 😕Platelets and hemoglobin are slowly edging up to the normal zoneLDH under control
We are so very thankful for this good news and thankful for all of you who have prayed for and supported us in this journey. God bless you all.
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.
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,
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.
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.
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!
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!
“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.
In spite of being told that his bone marrow was no longer able to produce white blood cells and the red blood cells were being phagocytized.(eaten) he has seen a significant improvement in those counts. Unfortunately, the white blood cell counts, WBC, have fluctuated from a high of 4.8 and have trended downwards the last few days to a WBC of 2.4 today.
Going the wrong way!
We were hopeful that the bone marrow would continue, without any additional help, to produce these cells. However, it appears that they may reinstate the grastofil injections along with the corticosteroid to stimulate the bone marrow to produce the WBC’s.
Garry’s haemoglobin continues to rise and was at 79 today so a blood transfusion is no longer indicated. His platelets are also holding their own at 46 which is an acceptable level.
Low but passable
His blood pressure still tends to be a little on the low side, but not dangerously so, and he needs to be careful when he gets up because there is a little bit of dizziness and instability.
His temperature is normal but he continues to get the IV ceftazidime every eight hours to ensure the organism that caused the septicaemia and wound infection are dealt with. He will complete this course of treatment on July 20 and will likely be discharged shortly after that. At this point he has been in hospital for 26 days, most of that time in isolation.
His pain level is much decreased, and instead of being a seven or eight out of 10 when he would get up to walk, it is now a one or two. He is no longer taking any breakthrough Hydromorphone or Tylenol to make it through the day. As you can imagine it is a tremendous relief for Garry to be able to be almost pain-free once again.
We are so thankful for all of this good news, and ask that you continue to pray with us that his WBC counts continue to go in an upwards direction and be maintained. The hospital is now looking at his discharge needs and it seems he might need a wound care nurse once he’s at home.
I’m really starting to miss him and can hardly wait for him to be discharged.
It has been wonderful that his sister Gail has been here twice and just left today after being here this past week. She was great company and we enjoyed a number of restaurants including Harth, Bellisimo’s, Nuburger, and Sushi N. Such nice treats!
Garry is able to have visitors as long as they mask and wash their hands before going into his room. He finds the days long and would enjoy a visit.
His appetite is back and he just finished consuming a pretty large grilled Reuben sandwich which I prepared for him at home. Do you think he might be a little bit spoiled? Yeah, I think so too!
Well, that’s the report for today and I’m glad that it’s mostly good news. Thanks again for being on the journey with us, for your love, support, and especially your prayers. We are blessed!
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, ❤️
