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.
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.