On July 25th 2019, the night of my 40th birthday party, I had a seizure. The seizure was caused by a large tumor in my brain. The tumor is called an Oligodendroglioma. It is a tumor that can occur in the brain or spinal cord. Oligodendroglioma forms from oligodendrocytes — cells in the brain and spinal cord that produce a substance that protects nerve cells. Oligodendroglioma can occur at any age, but most often affects adults. My tumor was a grade 3. Meaning it was cancerous.
The cold hard truth is that the tumor is non-operative. It is in the middle of my brain. I had a biopsy that confirmed this truth. The tumor will be in my brain indefinably.
I was treated with targeted radiation to the tumor. In conjunction with the radiation I began a chemotherapy regiment. I have been on chemotherapy ever since this time. Chemo consisted of several different types, from IV infusion to oral medications. In total I had about 5 different chemo drugs running thru my system since diagnosis.
Recent and numerous MRIs have shown that the cancerous cells have as of today been stabilized. Growth has been stopped. Tumor cells are dead, dying, or at least not growing. The cells are stable.
I am providing this information to explain that I cannot say I am in remission. I will never be able to say those words due to the type of tumor I have. But these are medical terms and I am more than just definitions.
As of today, Chemo is over indefinitely. My doctors will monitor my tumor via MRI’s every 3 months, then every 6, then every year… the time between MRI’s will increase as long as the tumor continues to remain stable.
Staying true to myself is now my purpose. I live honestly in the moment savoring all the blessings I receive. I feel love. I am grateful. I am blessed.
Fall is defined by loss, the loss of leaves and of momentum. Melancholy and faithful we all sat in prayer and prayed desperately for change. Change in temperatures, change in politics, change in spirit. And through the dim cold nights we slept under the same star speckled sky. Our eyes would meet on occasion through monitors attached to Zoom. Mostly we carried on, to feel accomplished that we had made it.
Winter is stillness. Time crawls . We shelter close, hold on to our families, and grow strong bonds to break through the frigid air. All feel a great loss. A loss in faith. A loss of breath. We take nothing for granted, for it is all a toss up.
And then, the new season without a sound, begins to grow. Under the surface of the earth, sister spring weaves herself into a quilt to warm mama’s magical lap. And on the horizon we see a worn and battered landscape. And we remember this is how it is meant to be. The struggle with life is that all we have is our memories. The snares and snags, the jigs and jags, all perfectly placed in our life so that we remember.
A year and 8 months ago, I had a life changing seizure. Dizzying days followed, along with the diagnosis of brain cancer. But one detail remains brazen in my mind. I remember the love. I felt an overwhelming sense of peace, an outpouring of love. I felt chosen to for this experience. As if my whole life was designed for this battle. I had prepared for the season without me even knowing. And as my season of healing now comes to a close, I enter a new season… A season of love.
April 12th, 2021 will be the last day of my chemotherapy treatment, God willing forever. We will continue to take MRI’s every 3-6 months with the intervals between them getting longer and longer. I am going to pursue being an artist full time. I plan on touring the great western united states with my love, Mike. We plan on buying a house together, some place big enough for all his kids. I want to garden, even though I know very little. I want to soak up as much happiness with which God is willing to bless. I want to live in the moment full of joy. No Day But Today.
Where have I been? I have to ask myself this often, to take stock. Mentally I feel great. The move in with my boyfriend has gone swimmingly. Combining our lives has been so rewarding in multiple ways. My boyfriend, Mike and I are so happy to have this time together to discover a deeper love. Covid did more to keep us together in this difficult time than I could have imagined. And although the battle continues, my phase to be vaccinated is approaching soon! My domestic front is blissful.
Treatment wise, I am currently in an aggressive cycle of chemotherapy. I am taking three drugs each cycle, two being administered via pill capsule. The third I have to visit the IV infusion suite, but the infusion is very quick. From the time I check in to the last drop of the IV is less than an hour. I am very grateful that the only side effect I have felt has been fatigue. So I always quote my neuro-oncologist and say “I am doing as well as I feel I am doing”. And I feel great… so I am great.
All in all, I feel a calmness settling in to 2021. If this was Star Wars, I’d call this chapter of my life “a new hope.” May the force be with you!
It is the dawn of a beautiful season. My love and I have been listening to Christmas music to get in the spirit. And this year seems especially hard and not just for me, but for the world.
I pray now daily. I try to focus on gratitude, on what really matters in life. I focus my words to heal, to create peace, to alleviate global stress, And bring forward an inner peace in my mind. I visualize a warm white light permeating the space between the ones I love on this earth and in the heavens above.
I pray for my father, so that he can find the strength to further heal from his open heart surgery. I pray he continues to find peace of mind and body in his new home at Bethesda Gardens. This is my prayer.
I pray that my MRI today produces a beautiful image of a highly functioning brain with very little to no cancerous activity. This is my prayer.
I pray that the Covid vaccine is administered quickly, safely, and effectively to this stricken country. And I pray that our local governments can administer this vaccine in a timely manner that will improve the quality of life of not only mine but all humans on this green and blue planet. This is my prayer.
I pray that the potential buyers for my house fall in love with the energy of my home and continue to spread the love of this wonderful home. This is my prayer.
I pray that this journal entry serves not only as a comfort to all my friends and family, but also as a spiritual moment of serenity. Regardless of the MRI results or the sale of the house or the happenings with the virus, I want us all to have a beautiful, peaceful, graceful communion during this holiday season. Irregardless of your spiritual or religious beliefs, Take some time and count your blessings. In the end our blessings far outweigh our burdens. So may your blessings comfort you in a time of spiritual drought. This is my prayer. Love to all and keep the spirit alive!
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 Still remains 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.