Sunday, September 12, 2010
Friday was such an immense day of stress. I had been anticipating my September 10th oncology appointment for the last month after I realized something is wrong with my hip.
I have creaky and sore joints all of the time and one hip was always a little worse than the other. I have a very high pain threshold so I just lived with it, not putting much weight to it. There are always so many problems to be working out with my body since the transplant. My biggest concern has always been my inability to sleep.
Try a week without sleeping and you start to lose it. Everything is unmanageable at that point and the brain goes into crisis mode.
So I felt almost physically ill when it was time for me to actually head to my oncologist. As I biked the short distance there I felt like I couldn't breathe. My chest was constricting and it had little to do with the small hill I was ascending. I could have cried in that moment and I would have felt some sweet release but as I've mentioned so many times before, my tear ducts don't work. It's odd that we take such small things for granted that actually have a huge impact on our lives. Like tears.
As I reached the building managing to put off a full blown panic attack, I locked up my bike. Never having been there before, I went to the front desk and asked where to go. I gagged down the anxiety, panic and fear that was trying to claw it's way out of me.
It occurred to me that as long and tedious traveling to my Vancouver appointments are, they at least gave me time to process and cope. I had a drive, a one and a half hour ferry ride, and then another hour of driving. I usually have more than one appointment booked for the day so I have a few hours to walk in between and then the entire trip back.
I guess that has been my time to decompress before I get back to my life again. It is a bit like having a partition separating the two. This is my post cancer, medical life and this is my, just me, life.
In Victoria I sat in the waiting room and then I sat in an examining room. I had time to take a series of anxiety propelled photos. A pharmacist came in to speak to me and was a huge help discussing my medications. She also was as personal as she was professional and I felt listened to. I guess I don't get enough of that day to day in my, just me, life.
I recognized the doctor when he came in and he recognized me. I felt such a relief seeing someone familiar. When you live with weird things wrong with you it makes you feel sane again to have someone understand. He listened and queried me about the joint pain and took me very seriously when I said the one hip feels different than the rest.
For me, seeing general practitioners can become frustrating (as I no doubt I am to them) because the leftover complications from a stem cell transplant are so unusual. I'm a complete curiosity to walk in clinic doctors. They always greet me wide eyed and ask odd questions. I am a scientific anomaly. A surgeon acquaintance once told my close friend that I am equal to a one night stand. I offer the curios thrill without all the responsibility and work needed to research my problems.
Friday's oncologist will be following up with all my joint complaints and is having me come back in a month. He also filled out the MRI papers right in front of me to get it in as fast as possible. He will also be calling whoever he needs to to put the pressure on to speed the process. At the end I left having to try and get myself home and together for the award ceremony where I won first place in the Naked Truth category for a nude self portrait I did.
When I left the Cancer Agency, I had complete confirmation that they are looking for avascular necrosis which is death of the bone in the hip. It eventually leads to a hip replacement. I was also given the security of knowing that they had no reason to suspect bone cancer at this point.
As I pedaled home again the fear of losing a hip after all I've been through just overwhelmed me. Again, I couldn't breathe.... I could barely comprehend what's possibly happening to my body, much less deal with the fact that my private struggle was now hanging in a gallery.
It's one thing to write about it but the photo is so raw and real. It's no interpretation, it's the stark reality. You can see the drips of water on my body, the leumens hanging from my chest and even the washcloth I used to make that terrible world disappear for a few moments. Just the relief of the water rushing over me once a day, kept me alive. It was almost a sacred little space and there I was supposed to go accept the prize in front of a gallery filled with people.
I was so thankful when my oldest son came in and stood by me in that moment. We had gone through that experience together and here we were in this surreal post trauma scenario. My naked self is tacked on a wall with people discussing it, getting in closer to inspect the details and having some sort of opinions about it.
I just could not cope with it. As strong as I like to believe I am, as much as I explore my outer limits, as much as I push out into the world..... it was just too much.
Perhaps this is just a grieving point. As much as I tried to distance myself from what was happening to my body by putting the camera lens in between, I still see the decay, the dissasembly of everything it is to be me.
I stood closely to my towering son, keeping hold of his strength until I slipped in to accept the prize. Words were said, I didn't hear them, life went on around me, I hid. I stood away from my photo for fear that someone would say something unkind within earshot, ask me questions or even just talk to me. I was way out of the vacuum of safety. I was utterly exposed on that white wall.
I stood there surrounded by hundreds of beautiful photos, all beckoning to be admired with their colour, depth and optimism. My shades of grey were like a poison in that cheerful room.
I suppose I am just too close to the subject of me to see what anyone else would observe in that piece of paper with the image of me burned onto it.
My big son looked so handsome with his warm smile and his, Mad Men, style hat. A friend commented that it takes a loving, amazing, confident, secure young man to attend a gallery opening with his mom's naked self portrait.
The two of us standing there together felt like a solidarity of love and strength in the aftermath of a terrible incident. We had lived through it to different ends. He became a man and I still sift on, trying to find a place I can grasp onto and belong.
He is proud of me and let me know it with his smiles.
We are both survivors of cancer.