Written last night (Tues July 12)
A week ago Monday I started to experience fevers on and off throughout the day and night --> 37 to 38.2 Celsius. Along with this came increased pain, sweats and the occasional chill. Two extra strength Tylenol were able to break the fever each time and bring it down to below 37. By Thursday morning I was sick of this nonsense and off Tina and I went to the ER at Saint Paul's.
After having several blood tests, a CT scan, a chest x-Ray and some kind of urine and stool analysis plus multiple people probing my abdomen (to me this is the worst as my reflex is to tense up and want to break the person's fingers) they didn't have any evidence of what was causing the fevers. So a doctor that I trust from the winter, the one who caught the 7 cm blood clot in my lungs and thereby saved my life, suggested that I spend the night on the seventh floor so they could monitor me and make sure I was stable and to see if any thing developed in the blood and urine cultures. So I stayed.
After some arm twisting the night before my doctor contacted my oncologist in the morning and their best guess over the cause of my fever was due to tumour fever. This apparently is when tissue within the desmoid is disconnected from its source of blood and the tissue dies. The body then produces an immune response (fever) to deal with it.
With this news I was released from hospital knowing that if the cultures returned anything abnormal they'd give me a shout.
Fast forward to today and I've had the same spiking fevers since leaving the hospital. At first an annoyance as I thought oh they would eventually go away as long as I rested and then worrisome when they did not. So yesterday morning after reaching my breaking point I opted to make an appointment for today with the pain and symptom specialists at the BC Cancer Agency. And then this morning figuring that the squeaky wheel gets the grease I called my oncologist's office and the nurses line at the Cancer Agency. And they heard me.
The pain and symptom doctor who I had seen before quickly reviewed the tests done at Saint Paul's last week and realized that two key tests were not done... Basically tests to see if I had a fungal infection in my body.
This news really frustrated me and brought on a few tears at which point the doctor slowed right down and said with much empathy that wow no wonder this must be a frustrating experience for me. I slowed down too and said yes and said how frustrated I am with the machine... The system and not the people. How frustrated I am at how much self advocacy and pushing it can take at times to get the right information. It's not personal its systemic and yes the machine is much better than it is in America and wholly rotten donkey balls does it fall short at times.
So right now I am at home resting and starting the unwinding process by writing this post. I feel a bit more confident that me and the system will get to the bottom of the fevers and come up with a solution. And I think tonight I will watch the Lego movie.... Everything is Awesome as it's some great distraction.
The pace at which I am walking the yellow brick road is never as quick as I would like it to be and my distance from the end of it... good health is never as close as I want it to be. Chomping at the bit. This isn't the first time I have talked about this.
And every doctor that I see weather it is my oncologist, pain specialist, family doctor, gastroenterologist or another medical professional is impressed with my pace and progress. When I hear this I feel a wave of relief, a lessening of tension in my body as I notice a reduction in worry about how I am doing (Am I taking the right steps? Am I doing everything that I can to heal myself? Am I eating the right food? Am I getting enough exercise or too much?) and I also feel a wave of self compassion for myself as I ve myself credit for doing all the right things.
And surprise, surprise every time I check in with Tina or her parents or my brothers and sisters or for that matter anyone else who was with me in the hospital has a similar opinion to those folks with all those fancy letters behind their names and I have a similar response as well... relief from worry and more compassion for myself.
Time passes then my memory of what was said fades away and the worry and doubt returns.
This happened as recently as yesterday afternoon when I was relaxing with Tina and her parents on their porch. I asked Rose if she thought the pace of my recovery was going well and she thought I was doing very very well for what I had been through. To be clear everyone at the table shared Rose's opinion.
What followed then was a discussion, a recounting of some of the most scariest moments of my time in the hospital... This isn't the first time these discussions have happened and it won't be the last either. I think each time the discussions get easier and less scary (at least for me).
I was on heavy duty pain killers for most of the scary moments (7 weeks in ICU) plus a good dose of Ativan. With a surgery every other day in the ICU for a total of nine surgeries I didn't have a lot of room for fear. I did have a lot of room for doing what needed to get done to live and a bit of comedy as well ie giving my friends and family the queen wave each time I left for the OR... man was I stoned.
So now.... 4 months out from the hospital I have more space to separate out the present from the past. And I find myself experiencing quite a bit of fear and disbelief over my stint in hospital and in particular the time in the ICU. Yes I know that this happened over four months ago and when I talk about it or sit with myself quietly it feels like yesterday.
To help me untangle the events from my feelings surrounding those events I have started writing down the facts of the scary times along with how I felt at the time and how I feel now. Not a pleasant task and one that more than a few people have told me will help in the long term. With time and as my writing becomes more articulate (right now there are a few to many f-bombs and straight raw emotion) I plan to share some of these on the blog.
As for this continuing cycle of being hard on myself and experiencing frustration re the yellow brick road and then feeling relief when a doctor or friend/family tells me how well I am doing considering what I've been through and then forgetting about this as time passes along, I think I have a handle on one of the underlying causes (yes I was trained as an engineer to solve problems and that's what my mind does for better or for worse).
The only healing experiences that I have in my life that come close to what I am going through are the two surgeries I had previously. The Whipple and a total Colectomy. Both of these I had plenty of time to prepare for psychologically and physically. As well both were planned surgeries where the surgeons involved had performed the thoroughly planned choreographed procedure numerous times. Both of which also were performed on myself with minimal complications. Furthermore both of which within four months of the surgery I was well on my way to resuming my normal life.
So naturally I default to these surgeries to determine where the milestone markers are on this yellow brick road and if I am meeting them within the allotted time. I also default to these previous surgeries as the winter rodeo ride was such a scary and unpredictable one.
My plan is that with time and with focused writing on what happened to me in the winter that I will feel more ease on this walk down the yellow brick road.
Dan and Company
We got this... This has been the mantra of Dan's friends and family as they help him navigates a difficult medical rodeo ride. This blog contains entries from Dan as well as his friends and family.