There are so many things happening and the pace of life is accelerating. I try to pause to reflect and take stock of this journey, and I can’t. I cant slow it down. Trying makes things worse. Trying to stop the flood of decisions is like building Hoover Dam. So I am left plunging into the depths of the Colorado River and let this unstoppable force take me for a while. The waters will recede once again, but I must first keep swimming. Like the line from my favorite Pixar film, I need to just “keep swimming”.
My father’s health has been a constant worry. After surviving a heart attack about three weeks ago and a multiple by pass surgery, he is not the same man I knew. He has about 20% of his heart function left and his mind and body is very weak. I do not see an easy path for him. I am also uncertain if his needs surpass my abilities to care for him. It is a terrible choice I have to make.
So I just keep swimming. I need to focus on my own healing first and let my friends, my family, and my partner pull me to shore. I know the waters will carry us all toward what ever fate awaits. Matching life vests have been deployed. I hold on…
MRI results are in. The tumor is stable. No new growth. The profusion shows a decrease in blood flow to the tumor. All in all very good news.
I do get a lot of friends asking me what this all means. They ask how its going, how am I doing. And its so hard to articulate my understanding on whats going on in my head. So my oncologist said it best, “How I feel is the most important indicator of how I am doing”. Think about that for a moment.
I will always have this tumor in my brain. The parts that die will remain sitting in my brain forever. Surgery is not an option. So it is important to remember that there is no miracle cure possible. But that does not mean I give up hope… miracles are miracles only because someone said that its impossible.
I can live a very long time with this tumor in my head. But it will always be a part of me. I continue on to cycle three of Chemotherapy starting at the end of the month. The objective is to kill as much as the active cancer as possible.
So, how do I feel? Many words fill my head: Hopeful. At peace. Accepting. Loving. Being loved. Tired. Happy. Confused. On point. A cacophony of emotions and thoughts. But I know that at the my core is a soul full of life ready to radiate peace to all. Can we translate a feeling into a diagnosis or prognosis? Sure, why the hell not?! I feel unstoppable. On my marathon of healing, I have no map. My heart is my compass. I blindly feel my way to the light. And I am loved. I am loved. Thank you for all the love being sent my way. I can feel every last ray of it fill my heart.
I accept I have made some bad decisions in my life. And I also accept that some of my worse decisions were sometimes the most fun! The decisions I am making lately don’t seem to rank very high in terms of significance, and yet everyday I choose treatment to my body to suffocate every last neuron in my brain. I move through these days of quarantine and restrictions with a sense of being uncomfortably numb. The decisions I make everyday ever polarize my brain into two camps. On one side I want to run outside without a mask, drink stupid amounts of wine, max out my credit cards, and recklessly spiral in fits of joy. On the other side, I wear a lab coat and a hazmat suit. I hold a calculator, a thermometer, a calendar, and a pill case. Those camps will never be at peace. It is my struggle to allow the joy to enter my life and not let the lens of fighting cancer be so consuming.
So catch and release, like the lyrics tell me from a great tune by Matt Simons. I have to find those moments of joy everyday. I have to turn every stone. And the rolling stone gathers no moss, yadda yadda, kaplooee! I take life so seriously! My inner child is screaming at me. I need to pay more attention to him. It’s 5:23 am and I can’t sleep, and these are the thoughts keeping me from falling back to sleep.
I can’t begin today without acknowledging my absence from keeping this journal alive. Just like I noticed this week one of my plants that died because I did not water it enough. Lord knows I had the time. But my drive had faded. I lacked the interest in keeping my beautiful plant thriving. I barely did enough just to keep the dead leaves from falling off. A good friend took the plant to his house to rescue it and nurse it back to health in the comfort of a shaded area in his yard. And I felt such a sense of relief that someone cared for this poor little dried out vine. I always loved that plant. So what happened I asked myself?
But it is not just a dead plant, it is a sign of what I had lost. I had let my writing slip. I seldom meditate anymore. I stopped exercising and taking walks. I blamed COVID. I blamed cancer treatment. I blamed this Godforsaken heat! I made further excuses, like unemployment made me bored or my anti-depressants had failed. I was in a rut. I took my frustration and inner angst out on people who didn’t deserve to be treated that way. And all for what?
I think we are all in a rut. My doctors, my nurses, my friends, my family, we all hurt right now longing for a time when loving wasn’t filtered . So I make a choice, today. With every fiber of my being I confirm and affirm all of me with love. I dedicate my life to love. Not just to lift myself up out of the darkness, but to spread my light with whomever is able to receive it. And although I started this journal to communicate the subtlety of my treatments, I in the end have begun a process of understanding and self-forgiveness that is near divine. And I am so very grateful for all of those who have walked this path with me through the memories, the present, and our glorious future together. There are miracles to behold. Hold on. My plant will bloom again and so will I.
Because I don’t know what else to do, but write. I try to tell my story, as brief or as long as I can muster the mental capacity. I write all my fleeting thoughts down in a frenzy of how they appear on the lens of my mind. If I pause for too long, the wisps of cognition loose shape and become scattered. And my fragile mind acts like a net capturing my delicate intent.
I write about the job I once had designing spaces for the company California Closets. Having just received word of my termination, I have not even the space in my mind to currently process what this means. I did love this job. And it allowed me to express myself and create beautiful places for my clients. But I have to close this door for now and move on. I do not know what I will do, when my health allows me to do it.
I write to explain my latest medical developments. There is an area of my cancer tumor that does not want to cooperate with my grand vision of healing. So my Doctors have pulled the rug out from underneath my treatment in the attempt to shake things up. The chemotherapy I had been on since December 19′ was no longer keeping the tumor from growing. So my new battle begins with the hope that my new pill popping regiment will kill this thing eating my brain for breakfast. Two different cancer drugs I now take, Lomustine and Procarbazine. I am still tying to master preparing food for myself that now has to be Keto and low in Tyramine. Coffee, chocolate, red wine, soy products, aged cheese, processed meats and avocados are just a few of my new restrictions.
I write because it distracts from the news. Its all numbers and figures, angry shades of red and blue. I know the importance of staying informed, but my intake capacity is just too overwhelmed. I write to create enough mental jabber to drown the downpour of political vulgarity and dooming global realities.
I write because it allows me to question the dark clouds that fill my mind. And I ask why I let the darkness in? What happened to my peace of mind? What happened to humanity?
“Hello darkness, my old friend
I’ve come to talk with you again
Because a vision softly creeping
Left its seeds while I was sleeping
And the vision that was planted in my brain
Within the sound of silence”
I write so the world can go silent, just for a moment. And remember why we exist . . . for one another.
Yesterday I had an MRI. The positive news is that there is a decrease in the foggy areas on the scan. The foggy bits are called exactly that because the physical sensation of having them matches the visual description perfectly. I feel a little foggy. But it is a gross improvement from where I was on my last MRI. I have graduated from Physical Therapy and Occupational Therapy because this fog has lifted. This is the successful outcome of the Hyperbaric Treatment.
Yesterday’s scan was the same type of scan (MRI with profusion) that showed some trouble spots before. If you remember from previous posts, when the image comes back to us we see my brain in shades of grey. But because of the contrast dye injected into my veins at the time of the scan, the doctors can determine which parts of the tumor are active. Active cancer cells are red, dying cells are yellow, and dead cells are blue. Yesterday’s scan shows there is an increase in red areas. It does not look like a huge increase in cancer cell activity, but it is enough for my team to suggest I switch Chemotherapy drugs.
I am weighing my options for therapy in the next several days and I am in active dialogue with my team to understand what this looks like. From the get go I have wanted the quality of my life to come first and enjoy this time to the fullest. So I do have some soul searching about the consequences and side-effects of this new chemotherapy drug. And to clarify, the drug is not new and has been the standard care model since the 1960’s. I was on the “newer” (Temodar), which the verdict is still out on its effectiveness for my brain tumor type (Oligodendroglioma). More specifics to follow soon.
Today I am…
Stricken with sadness. I pray for an end to violence and corruption.
Attacked by grief. I pray for all the lives taken by Covid and racism.
Awakening to injustice. I pray that truth is revealed and justice had for all.
Living my life out loud. I pray for all the LGBT community that we may rise up, stand up, and over come hate.
Completing 20 treatments in the Hyperbaric chamber. MRI’s are next and another round of Chemo, more lab work, and Occupational Therapy. I pray for radical remission.
So today I am rising, like a great Phoenix. With my appropriately named city reeling in Covid infection, I spread my magical wings and fly with the winds of change. All our lives will or already have been permanently altered. My unfaltering vision for humanity is what keeps me going. With every Cancer cell I destroy, that is a victory one step closer to us all healing. The only way for me to stay positive and heal my body is to see it in this way. I can not change the world, but I sure as hell can change me.
Not much to report, friends. Platelets are low again. So I am starting a reduced dosage Chemo round. There is no need for concern. With all the various treatments I have been through, I am still feeling great in both spirit and mind. I remain masked when I need to leave the house. And all my treatment centers have strict entry procedures with mandatory temperature and vitals before admittance. Safe and sound. Safe and sound. I carry on healing. I meditate on my brain being cleared of all junk, and its magnificent tissue being supercharged with life giving oxygen. I heal and grow stronger with each passing day. I carry on.
Like in the novel, 20,000 Leagues Under the Sea, I feel like I have experienced a real deep sea dive. It is the only way to describe the experience. My fellow divers meet in the prep room, in front of an underwater dolphin mural. We are then wheeled into what I can only describe as a rectangular submarine. We each gear up by putting on giant bubble helmets with pure oxygen being pumped into them. They snap in place with scuba gear gaskets, making the seals airtight. Once the crew makes the last prep, the huge metal vault door gets sealed from inside by our “diving instructor”. 3. 2. 1 Dive! A massive wave of air and rushing sounds sends a signal to all divers that we have begun our decent. The room is pressurized to an atmosphere of 32 feet below sealevel. It takes an aggressive ear popping campaign to alleviate the built up pressure. But in the end I am left with an hour and half worth of highly pressurized pure oxygen filling my lungs. This oxygen infusion treatment is the thing of the future. It is the future!
We return to the surface, revitalized and oxygenated on a micro and macro level. And then I do it all over again, for approximately 40 days… 2 of 40 complete. It’s going to be a very oxygen filled summer.
I begin with my body. I am feeling at ease in my body. I am relaxed and there is little tension. My coordination and balance are improving with each wonderful session with my physical therapist. And tomorrow at this time, I will be participating in my first hyperbaric chamber treatment. It is a fascinating experience. I wear a giant helmet like a deep sea diver. They pump pure oxygen into my bubble helmet. And the entire room gets pressurized as if I was about 33′ below sea level. They actually call the treatments “dives”! And just to add to the experience, the whole room is covered in a deep-sea mural. How cool is that! I love science and good design. I will do this 2 hour treatment every weekday for 40 days.
My spirit is strong. I feel love in all aspects of my being. I heal myself thru this love. I project the love out into the world. I try in this uncertain time to focus on this positive wave. I know things are scary, but I don’t fear. I don’t have room in my brain for doubt.
My mind is focused. I am centered on daily goals. And I am able to communicate again with ease. I see positive changes happening. All is well and I am safe.