More Speed Bumps

Sometimes this is my experience of my healing journey.  Sometimes the bumps hurt like hell and other times I barely feel them. This week I felt every single one of them.  

Yesterday morning I checked myself into Saint Paul's ER with Dylan and Tina.  I had been trying to manage an elevated temperature for a couple of days that finally turned into a fever.  I also had pretty bad abdominal cramping as well as a high heart rate.  Luckily with these symptoms and my recent medical rodeo ride it took all of two seconds for the triage nurse to admit me to a bed and get me an IV with fluids and some pain medication (Hydrophone). Given my pain was about an 8/10 the pain meds were greatly appreciated by me.  

And then hospital time set in.  The whole hurry up and wait.  15.5 hours later and after a thorough set of tests (blood work, chest and abdominal x-rays, plus an abdominal and pelvic CT scan) and a great reduction in pain and disappearance of my fever I was discharged.

The only thing missing was a clear medical explanation for the symptoms that brought me into the ER. The best guess the docs had for the abdominal pain was:

1. My body adapting to the shortened small bowel and absorbing more water from my stool.  This meant that I was probably taking to much Imodium and it was causing cramps (pain).  This is a good thing as it means my body is adapting. 
2. Partly due to a decision by myself and my home TPN team to reduce the amount of ant acids I was taking.  I have since resumed the original amount of ant acids that I was on.
3. Simply not taking enough pain meds.  
4. One of the Desmoid tumours that I have is quite large and sitting adjacent to my small bowel.  It might be causing some discomfort due to local inflammation around it.  

As for the fever they thought it could be due to:

1. A mild infection from stool passing through my abdominal wall (something the abdominal wall is not designed to do).
2. Inflammation from around the above mentioned Desmoid tumour

The high heart rate they figure could be caused by the fever and by inadequate pain management on my part.  Put simply I don't like taking pain medication as I am worried about becoming dependent on them AND by admitting that I need them forces me to accept the reality that my body needs them which means that my body is not healing as fast as I want it to..

15.5 hours in the ER is not exactly fun and it was easier for me as I was partly stoned from the meds; Tina and Dylan did not have this perk.  And I am grateful for them being with me.  I, like most other people, don't like the ER.  And learning that part of my symptoms might be caused by one of the Desmoid tumours that I have was particularly hard for me to hear as I imagine it was for both Dylan and Tina (up until now I have experienced no side effects from the Desmoid tumours). 

Yep speed bumps.  I survived 9 damn surgeries, 6 weeks in the ICU and according to my surgeons I came close to death 3-4 times so as far as I'm concerned the stuff I'm dealing with now are speed bumps of varying sizes.  This is part bravado to cope with looking ahead at a complex medical situation and a good chunk of straight god damned determination to live a full life.  Dylan Thomas' "Do not go gentle into the good night." sums it up well.  

How am I with all of this? Am I scared?  Yes.  Am I intimidated by navigating a medical healing path where none of my medical specialists has any clear solid answers? Yes, this is like traveling between here and Williams Lake in a car at night with only one headlight, no map, and no high beams. When I had my collectomy there was a clear healing path and a recommended route to get better --> many collectomies are performed each year around the world).  Do I worry that the desmoids might be giving me symptoms? Yes.  I find myself worrying about this at points throughout the day.  Do I worry if they will be able to get the desmoids under control again? Yes. 

So yes many worries for sure.  And I notice that compared to a few years ago when I was receiving chemo for the Desmoids and facing a collectomy I spend less time worrying now then I did then.  This gives me pause and gives me confidence that I am adapting to this time of elevated medical uncertainty in my life more so then I was in the past and as a consequence choosing to live my life while riding the somewhat angry bull at the medical rodeo show.  

When it comes down to it I keep thinking about the serenity prayer and working hard at accepting those things I have control over and those that I don't and then spending time on the former. 

What helps with this is my work with Green Guys on The Drive and getting it off the ground and running for the season.  So far this year we have raised $2,500 by selling 10 shares in the garden, built a temperature controlled greenhouse, planted most of the soil garden and started the first crop of seedlings for the hydroponic garden.  All of this being done with volunteers... with a growing number of people who value community, friendship, and local healthy food.  

Uncle Ron and Auntie Judy helping me plant the first crop of seedlings for the hydroponic garden.

Tina and Jeff planting carrots and beets.

Brandon (good friend and co-founder) constructing the greenhouse.

Myrna and my Dad planting some radishes.

Before some spring cleaning (thank you to Win's brother and his friend for the industrial pressure washer and pickup truck.)

After spring cleaning.

Tomorrow (Friday), Dylan, Tina, and I will meet with my Oncologist at the BC Cancer Agency.  Given that Desmoids are so rare (not enough diagnosed each year to do a phase 1, 2, or 3 clinical trial... I think there are 900 diagnosed a year in the United States ) I am fortunate to have my current Oncologist who is one of the leaders in the treatment of them in Canada.  She will have reviewed the multiple CT scans from my stints at Saint Paul's in the last 5 months and will have hopefully put together a treatment plan for me.  Fingers crossed it's one that will allow me to keep working on the garden and keep moving forward in my recovery.  Oh hell forget that I will find a way to move ahead regardless.  Life is for the living.