Things have changed once again. My disease progresses.
The cancer is now in my upper spine and at the base of my skull.
There is pain finally which has become harder to manage.
It travels across my back on the right side of the spine. The same side as the most serious
invasion and the first mastectomy. It travels across neck and shoulders, under the arm and to the elbow.
My breast area is filled with scar tissue. New cancer has decided to travel there. Very tender.
I have been having some problems with Morphine and Hydromorphone. Haven't been able to take Codeine
since childhood. They are trying Methadone and Cannibis Oil. Sleeping pills. Everolimus, Spironolactone, a diuretic, Co-exemestane and sleeping pills when needed. This collection of pills requires side effect management. More pills. Acid blockers. Vitamins. A drug to stop my bones from crumbling. Creams to deal with rashes and topical pain. Creams to deal with other delightful side effects. Anti-nauseants. Steroids.
Antibiotics in massive doses when I get sick. Sunblock to cover areas previously radiated.
I now get Palminodrate infusions once a month where I sit in a room with other late stage cancer patients who are still ambulatory. The walking dead. We have the deepest compassion for one another and almost never talk about cancer. It is a strange little club. Four of the terminal in the room with chemicals dripping in from Intravenous bags of many colours. They now have to dig for our veins because they have developed nodules, collapsed or toughened. Three tries and another nurse has to take over. Three more tries and the next nurse takes over. And the digging hurts.
People say things. Tubes coming out of all manner of orifices. "I am trying to make it to Christmas, my kid's wedding, my birthday.". They say nothing about pain. Occasionally about indignity. Often about the effing exhaustion that follows all of us. Some try to obliterate their sense while others , like me, fight tooth and nail to find precious lucidity. Afraid to disappear. Some pray away in the language of their faith. All faiths.
Or talk about losing faith. Or have none and turn in disgust at all the frailty we are to a person.
Cookie ladies come by with treats. Cheerful and chirping nurses. Families who set up picnics and show up baby to granny.
I had radiation to deal with the pain in my lower spine in October and November. It worked pretty well.
But it damaged nerves and I have a very hard time walking down hill or on a slope. I drop things. Have what is known as Breast Cancer Palsy. And cognitive changes again from what is known as Chemo Brain. It makes decisions hard. Abstract thinking is hard. Motivation is impaired. Depression. Mood swings from the hormonal soup I am.
Some good news is that the cancer has retreated from my lungs. That means I can breath with only the occasional reactive airway incident where I choke on foam. But I nod off. Fall asleep. Perceive things wrong.
Have to get up quickly and vomit and fight the constant nausea and dizziness.
I have tried hard to stay alive for a long time. But I don't remember who I was anymore. What emotions belong to me and what are chemical? I have no idea.
This week twice someone told me the story of another person who has lost the will to carry on with all of this. That the person isn't like me. That I am stronger, braver, more motivated. And I gasp. Why is this survival thing a contest worth comparison.
Other people have suggested that I am exaggerating my situation. That I am addicted to morbidity.
That I am really not that sick and can't come back to the world because it is too scary. These things can all be followed up with documentation. I am considered palliative for all that means. Late stage cancer.
I have hair. I look pretty good. I still stand up. Walk now without much pain.
I was offered radiation on the base of my skull this week. It would impare my memory most likely, cause problems with my ear and cause me great pain. I might drool. Vomit a lot. The side effects could be intellectually disastrous. My father lost his ability to move his arms, lost the ability to walk. He died in the hospice living with dirty diapers, bed sores and no longer had a voice except to whisper. He was mostly unconscious for the last few weeks but his pain was not controlled. My fear comes from experience.
I said no! Because the effects will not last. The disease will continue to progress.
I have entered that pissy place where heavy duty anger has settled in. Regret. Hatred. Neediness.
Possessiveness because of the terror of losing one more relationship.
The need to yowl at the moon in agony. In deep sadness. Not my finest hour.
I hate my life. But keep on truckin'. I know that I am lucky. I have had all this time.
How long now? I am so worn out.
I spent time. Minutes. With my friend Karl. He is a week or two from death. His pain permeated every pore in my body. His defeated face peeled my heart. He has tried so hard. His little corner of my life is soon going to fade away. Now he wants to go.
As I am.
I am sick of this. I grieve my old self. The successful, accomplished, sensual and beautiful self who had time for compassion and thought of other people. Of my old charged and adrenalized life. Of my art and ability to follow opportunities. I just need comfort and despite the loving kindness of my family, friends and lovers I simply can't find it. Elvis has left the building.
I have made an appointment with Death With Dignity. I am afraid that if I lose consciousness those who love me will hang on tight. Keep me here. It is inhuman to keep pretending I need anything else.
Chin up. I suppose it is the only answer for now.