A Case of Mistaken Identity

One step forward, three steps back. Usually the pattern seems to be two steps back, but it’s just been that kind of a week. And month. And year.

Upon hearing the news on Thursday that I’m eligible for radiation therapy for pain management, yesterday took another downward turn. After pleading my case for the last week, the CCAC is recalling  the wheelchair pad that many of you have seen me hauling around to doctors’ appointments and for the rare outing. That thing had truly been a blessing for the last six months. Most of my day is spent in bed trying to take pressure off of my hips and legs (hence the addiction to Words with Friends, on-line courses, whatever it takes to occupy my mind in a semi-productive way on my iPad. As for Angry Birds, I’m going with the excuse that it’s good for my manual dexterity!). For car rides to the hospital or for longer periods of time visiting with friends, the wheelchair pad allowed me to sit with considerably less pain. Instead of trying to contort myself to shift weight from my hips, I could get away with appearing to be a healthy person for a good half hour or more.

To put it bluntly - I’ve not expired quickly enough. My allotment of time for use of the pad as a palliative patient has passed, but they can put me in touch with the manufacturer to purchase one for about $750 (as if I have that kind of money floating around, they’re well aware of my situation of being without a home and financial support). This “expiring not quickly enough” concept is wearing a bit thin in my world right now. Some of you know to what I’m referring, and it's damn unsettling to those who are aware of what is going on in the background with our personal situation.

I know the direction that this is heading. The disease is spreading, and I’m getting worse. There is no question about that. In the last forty eight hours I’ve had the following conversation three times with specialists (various phrasings, but you’ll get the drift).

“Sandy, you do understand that the radiation is only meant for palliative treatment to try to decrease your pain. Right? There’s no reason to believe that it’ll slow down the progression, and we need you to understand that”.

I’m sorry, but at what point did I express that I had any hope whatsoever that I was going to get better with any of these experimental treatments? I may be a “glass half full” kinda gal in many ways but I do understand the prognosis. I just want less pain! And most certainly the physical challenges and test results indicate what is going on (it’s pretty amazing that my heart hasn’t imploded yet according to the data downloaded from my pacemaker. The Energizer Bunny just keeps on going!). 

Add to that, a conversation with one of my Toronto Western doctors who asked me if the Hamilton team would be willing to irradiate my heart. Hmm, have I just been told that other options for cardiac pain relief are no longer viable? The logical thing would have been to immediately ask if that is truly the case, but I just couldn't go there yesterday. And don't think that I can for at least a few days, there's just too much to absorb at this moment.

Back to this issue of qualifying my treatment expections. My self-identification as a generally happy person is confusing the heck out of many. Because I'm in their office with a smile on my face and an occasional joke, I fear that they sometimes believe that I’m not taking this seriously.

This is the way that I’m choosing to come to terms with my various challenges. I pick my battles, because I don’t have the energy to fight them all (and there are some really crucial ones on my plate right now that suck every ounce out of me on a regular basis). There are many aspects of my life that are out of my control, but I do get to choose my attitude every day. I want to be the person that others still enjoy being around (and to my friends, I thank you for letting me know in so many ways that you think that I’m worth spending time with in person, on the phone, on e-mail or Facebook). Heck, I just want to like myself when I'm on my own! Being cranky just doesn't feel pleasant at all.

Don’t let the failing body fool you. I’m still in here. No false hopes, just a strong desire to spend the rest of the time that’s left with a smile on my face far more frequently than you’ll find a frown or tears. I still want to enjoy what I can with abandon, love the people I love and graciously accept kindness and love in return. Lie that it may be, sometimes I just need to hear that everything will be okay - to keep me going even though as every day passes it becomes less of a truth.