Thursday, March 13, 2014
...... another sleepless night....
....... I roll over onto my left shoulder and the dull roar turns into a deep pain through the shoulder and radiates across into the chest. I shift to find a more comfortable position and am met with more pain. I can only manage to be comfortable sitting upright. There are so many tender spots it would be difficult to pinpoint which one hurts more when I shift again. I get up to go to the washroom and decide that there is nothing more I can do but get up and walk around.
Uncle Paul and Mitchel are up watching a StarTrek movie. It is 3:30 in the morning. I put on the kettle and settle in to watch the final half hour. The boys head up when it is done. I cradle the warm tea and decide to watch the last Die Hard movie. Its no use trying to get to sleep until after my early morning appointment in radiation. I will need to get some rest before class this afternoon. I have come to count on the feeling of deep fatigue within a few hours of treatment. I have to learn to pace myself and do only what I have to do these next few weeks.
I contemplate having something to eat but decide against it. I have been a little queasy for the past few days.... it has been a bit challenging this week and I am tiring quickly. I think this next week, I will keep a low profile. I have to conserve what little energy I have left in order to cope over the next week. I have 4 treatments left. This morning I had a treatment which went better than yesterday but the pain is still there. The Radiation technician has offered to get a prescription should the pain get worse. I am trying not to take anything but I will have to take something tonight in order to get comfortable enough to sleep.
Friday 14th March....
Today I am in to have radiation on both the neck and liver lesion. I get cozied in for the first treatment when we all notice the machine is quiet.... it is offline and has completely shut down. Up I get while they call the tech to come in and reset a tripped emergency stop. I would love to watch the tech work as this is right up my alley. The radiation technologist lets me know that I can ask the tech group if I can be there the next time they pull one apart for maintenance.... I would totally love that!!! I go back out into the waiting room until the machine is up and running. A few minutes later, the radiation technologist comes back to call me into the suite again. I turn and wish the man in the chair a few over from me the best of luck.... his days are numbered and the yellow pallour of his skin tells me it isn't good. He is getting radiation to keep the pain in check while the cancer continues to invade his entire body. He was first diagnosed in his youth and as he says.."it was when I was stronger and able to handle the treatments and the illness". But we both agree that there is ultimately a price to be paid every time you go through treatments. He has already lost a kidney. We have both gained an appreciation for what we do have. It reminds me of a student the other day complaining and telling me that only bad things happen to him..... I looked at him and let him know that while he feels that way some days... he is talking to the wrong person. He sheepishly and quietly apologized.
I can feel the heat today in both the shoulder and the liver. I think about how grateful I am to be in this position and in this city to have this opportunity. This trial is being monitored carefully by my medical oncologist who will meet with me after today's treatment to touch base with me.
After my treatment, I head down the hallway past the Tim Hortons to the patient examination rooms to meet up with my medical Oncologist. The nurse steps into the examination room and goes over a few details. Are you in any pain. Yes. I am having a difficulty sleeping because of the pain in the shoulder. Dr. Locke walks in a few minutes after the nurse called up to his office. The radiation department had inadvertently booked the wrong doctor. He is dressed in his jeans and a black sleeved cotton shirt. He smiles at me and begins to ask me some questions based on what the nurse has conveyed to me. What kind of pain? Is it finger pain? ..that means that when I touch with my finger in certain spots on my neck, it elicits pain - a sharp nerve pain. He reaches over and touches my neck and I jump. Yup, that hurts like hell... but I tell him that it is a small price to pay if this works. His concern is that the nerve will be permanently damaged and leave me with an arm that doesn't work. He notes the neck is swollen and this should resolve itself a week after treatments... the lymph might not be able to drain which might expain the puffiness.
Dr. Locke then gives me instructions on how to check for permanent nerve damage. Fold the arms like you are doing the chicken dance. Use your right hand and try to push the left elbow down. We are looking for weakness. Stretch out the hands and pull the fingers back on the left hand with the right hand - this while trying to push back with the left hand... again looking for weakness. The last test is to continue to check the upper arm for any numbness at all. That would involve just gently scratching the nails over the skin. He is running through my file when I notice the CT pictures. He shows me the first series of pics which are the cross section of the lesion in the neck. The target of colours illustrates the level of radiation that is being applied and the safe margins. I ask about my liver. He flips over a few pages and shows me the lesion and the target of where the radiation pattern is. He lets me know that the radiation specialist that planned out the radiation spent a great deal of time poring over the exact process and level of radiation that would hopefully completely erradicate the lesion. He points to the artery that enters into the liver and branches off, only you can't see where it branches because of the lesion. I note this as he traces the path with his finger. If your lesion crosses this artery, the liver will essentially fail and it will be over. It is a painful way to die. He looks up at me and says there are no guarantees that there are no other lesions forming anywhere else and that they are only doing the two lesions that have shown up that the chemo was unable to deal with. With cancer, you can sometimes knock out the majority of the cells but a few remain, left to grow until there are enough cells to be visible on a CT scan with contrast.
Dr. Locke indicates that a CT scan with contrast four weeks after the procedure will show how well the radiation worked. Three months after that (one year after this 2nd journey began) another CT scan with contrast will show if there are any other lesions that have formed after chemo (which started in July 2013 and ended in October 2013) and if the current lesions have been erradicated. If there is no lesion found on the scan, I will be declared...... holding breath.......cured. My doctor looks at me with such a cherubic grin "you know, you are different... and ... we are hoping that you will be done with this journey". I agree on both and smile back. I trust him with my life....literally. I am a pragmatic woman and he knows that I had balanced all the possibilities before this part of the journey began and I am clear about what might happen to me in the short and long term.
I will be diligent in tracking the arm to see if there is any nerve damage on a daily basis. It takes about 24 hours after treatment to see what that treatment did. The pain in my side will subside by tomorrow.... at least I hope so. The pain I have right now is such a small price to pay if this in fact turns out to be a cure. I will have 2 days in between the last treatment and the next treatment. There are only three treatments left on the schedule this coming week.
In the meantime, I will be getting ready for the college open house on the 22nd as one of the program presenters and will also be demonstrating surface mount technology in soldering techniques along with our Lab technologist Sara. I am still working on the projects for our young girls visiting the college in May to be one of a number of women showcasing possible future career choices. On the home front I am still working on my urban garden. Max has come up with a design shaped like a flower with above ground boxes that form the part of the petals and a trellis in the center of the flower. Teri, an American FB friend is sending a flat Stanley my way this week and I am excited to show 'Flat' around some of my favorite places. This Thursday I am debating on the show 'Toe2Toe' on Rogers to be aired the following week. I am studying and presenting as the opposition. This is round 2 and I am hoping to win and go on. Life for me continues while I have a parallel life as a patient. I don't let the two cross over. Life is short enough without having to worry about what may come. I am living a life in the present moment. I am enjoying the time gifted to me. Life is simple.
I am watching the Avengers tonight and Stark has this electromagnet sunk into his chest to prevent the shrapnel in his chest from perforating his heart. He is always clearly aware of the imminent danger to his mortal self but yet has an amazing sense of humour, takes risks and lives his life to the fullest..... he is not just a 'superhero' but essentially what I aspire to be in my own life - knowing the danger yet willing to take the risk to gain a life worth living.
You can follow my urban garden blog on: http://urbangardenintheforestcity.blogspot.ca
Please have prayers for my friend Melina as she continues her chemo journey with a new concoction. I saw her this week entering the clinic as I was leaving... she is ill and fighting as hard as she can. Please send her positive vibes!!!!
Next friday is the final day of my treatments and a follow up by Dr. Locke.... until then, take care of each other and live your life today and live it happy.