I didn’t forget about you and the numbers are good! There were some dips as a result of the surgery which were expected and are recovering nicely.
By the Numbers
Good News
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.
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.
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.
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.
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.
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!
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?
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, ❤️
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.
Numbers
I guess I like numbers.
Today was a checkup with the CancerCare folks at St. Boniface Hospital and everything is fine. I’m feeling good, getting lots of biking in over the summer, intentionally lost a bit of weight and I’ve has a couple of my riding buddies comment on how much better I’m riding this year over last year. Always nice to hear.
Today is day 1,593 ( 4 years, 4 months and 12 days) in The Journey, day 930 since “Day Zero” (CAR-T treatment) and 455 days healed ( aka in remission)!
Some key blood work numbers are still taking their time in returning to normal but, I can’t complain, it’s all good. 🙂
At this point the posts will likely be few and far between. The next planed checkup is six months out, sometime in March 2023.
PET Scan #9 Results – Official
I’ve gotten a little behind in posting and while I’m writing this on January 16th, I’m backdating the post to January 10th when we actually received the full results of PET scan #9.
As I’d mentioned on the January 5th “Into the Tube” post we had a heads up over the phone that the news was going to be good, and it was! The summary is that there was nothing new found and the “previous areas of concern” … “appears stable” and in fact a bit better than the previous scan.
In addition to this good news there was also good news on the blood work front as well! Several of the key indicators are improving. White Blood cell Count, Red Blood cell Count, Hemoglobin, and platelets are all up.
LDH (Lactate Dehydrogenase) is lower, which is a good thing.
All in all, an excellent report, for which we are both very grateful for. Monitoring eases up a bit over the next while with a follow up oncologist visit on March 7th, 2022.
Never a dull moment
Spoiler Alert: I’m fine and all test results are good.
So, back on December 12th I started to feel an ache in my chest. Nothing significant but it felt very similar to the feeling that sent me to the ER back in March which led to the revelation of the lymphoma recurrence.
Well, I’m back in the ER. ☹️ Triage was fast but there is a 5.5hr wait, treating 50 and 23 waiting.
Backing up a bit, I kind of ignored the symptoms for a while and then when Shirley found out, she called our oncology nurse for advice. As a result they scheduled a CT scan for Dec. 24th. Symptoms continued off and on as we waited for the results which we got on the 29th.
The good news is that the CT result is very positive. The tumor is smaller, there is no spread, no damage from the radiation and everything from neck to abdomen seems OK. However, my on vacation oncologist wants me to be seen by a DR. for assessment. The suggestion is to call Urgentcare CancerCare which is sort of like an ER for cancer patients. I’ve been there once and received quick and excellent care.
A call to them results in an opinion that it’s nothing to do with the lymphoma and not a cancer issue. Initially they say I should see a cardiologist but later after a nurse/doctor consult they call back and say I should see someone now, as is go to the ER. I call my GP and he agrees.
Now I’m waiting. It’s literally standing room only in the waiting room and it takes about 45 minutes before I get a chair. There have been several ambulances and I overhear that the hospital is “full” due to a combination of COVID and post-holiday issues.
So after a 4 3/4 hr wait I’m in a bed hooked up to the monitors. A few minutes later I see the attending and we review my symptoms. My EKG is fine and so is the blood work ( aka – I didn’t have a heart attack). He doesn’t feel that my sympyoms are cardiac related. I mention that I rode the trainer for 2 hrs yesterday without any issues and his response was “That’s a pretty good stress test”. He was quite nice, wished me a good evening and I’m discharged. All is good.
Also good news, they didn’t need to use this piece of equipment. I’m not sure if it’s just how busy the ER is or the symptoms I presented with but I’m in the Resuscitation Room! I think they are ready for anything here. 🙂
The chest ache? Still a mystery but doesn’t appear to be anything serious.
One Year
Here I am, one year since I got the confirmation that I was cancer free. In remission as the medical folks say or healed as I like to say.
I can still remember the first visit with the oncologist where, amongst other things, she said ” this will be a life altering event”. And of course it was, more that I was expecting and of course I didn’t even know what to expect!
Beyond the physical aspects which thankfully came and went the longer lasting impact has been the mental aspects. Very few, if any days pass where I don’t think about the Cancer experience.
As we’re back at the hospital for a follow-up visit and going up one flight of stairs I remember the first time up these stairs where I was out of breath from the exertion due to the tumor press on my lung. After only 2 chemo treatments I noticed a significant improvement on the stairs and today I can climb them with ease. Thank you Jesus!
These days the on and off battle is in the mind. A few days ago I watched a TV show where a guy about my age who had cancer and was in remission found out it had reoccurred and was dealing with telling his family that he wasn’t going to do chemo again. I was in a funk for about a day as a result even as I tried not to let myself think “what if…”.
Working on staying focused on my Healer and living large. So thankful.