24 years ago, when I had my cancer diagnosis, I stopped fearing my mortality. Thanks for reminding me of what is really important. Over time, we all tend to slide back into our old habits. Without a shadow of a doubt, believe in your healing. Trust. 🙏
You sound like you are coming to peace with your daily being. I watch all of your videos. I get something out of each one. I am sorry for the long story I am going to relay. You don’t have to read it. If I shortened it it won’t make as much sense. My husband, Jimmie, was diagnosed, he was in Thailand during Vietnam war, with a degenerative neuromuscular disease due to exposure to Agent Orange. He was 26. They told him he would become a quadriplegic in 20 years. He did not handle the diagnosis well. He started therapy, physical and psychological as he continued his work in the military. As his muscles grew weaker, the angrier he became. He got a divorce. His emotional health became worse. He was medically retired. His spiritual health suffered as well. He went into the hospital because he feared he was a danger to himself. Three months later, after a lot of counseling, he got out. He had a better, more stable outlook on his deteriorating health and he went back to church. I met Jimmie 20 years after his original diagnosis. He was still walking albeit with a cane. We dated for 6 years while he worried about “trapping” in a relationship as he got progressively weaker. After 4 years of living, going to doctors and therapy, traveling to Hawaii and England and Paris ( I pushed him in his wheelchair all over because he would tire after a short distance of walking) we were about to go back to Hawaii to look for a place to live when he fell and shattered his thigh. Following a long surgery and a blood transfusion a few days later, the surgeon said he needed to go to an Arthritis specialist because he had severe osteoporosis. That Dr said yes, it would be dangerous and even life threatening to try and walk again. And then he said the word that scared me. Hematologist to see what the odd protein in his blood was from. While we waited for the appointment, Jimmie and I talked as we always did, what ever it was we would face it together. We would focus on each other and the things we would do each day. I was still working and hated to leave him during the day. We went to the Hematologist , after more tests including a bone marrow biopsy, the Dr. said Jimmie had the precursor to bone cancer. But it was possible it may never develop. He said suggested a short period of a pill form of chemotherapy. To think about it. After the initial hearing the C word, we both I think were shocked. Jimmie turned to me in the car and said “ Hey, it is just a small mountain for a mountain climber. Don’t worry, it will be ok. We decided to try the chemo thinking maybe it would stop the progression , the increase of protein in his blood. Jimmie was allergic to it and his lung collapsed. Still Jimmie told me it was going to be ok. Months turned to a year as he continued being monitored. Remission. We got married. I told him many times he would have to tell me to go away before I left him. We adjusted things and adapted things as Jimmie went from walking to using a scooter, to needing a wheelchair, to needing an electric wheelchair adapted to his limited mobility in not only his legs but arms. His attitude was always so up beat and positive. We learned to live with both his medical conditions and mine with chronic migraines and pain. We knew how precious life is and how fragile it is. I had to stop working and go on disability. I couldn’t find employment that would accommodate my needs and my needing to be able to go to Jimmie if needed. That was hard on my view of myself being a contributing person in our relationship financially. Financially it wasn’t needed, but it was really the loss of doing something I was proud of. My Drs didn’t want me working because of the stressors. I did it anyway for 14 years. Jimmie told me to get over it. I was approved for disability after I applied the first time, unheard of most times unless one had cancer or other life threatening conditions. Jimmie’s response to the approval was “see, you aren’t supposed to be working” . A year later, The protein levels rose to full blown Multiple Myleoma, bone cancer. Jimmie started chemotherapy, and we continued focusing on day to day activities and being with each other. Any little hiccup Jimmie would say “ it is just a small mountain for a mountain climber.” He made people laugh, they loved to talk to him, ask his advice about life things, he loved to tease and flirt. When he didn’t flirt with anyone in a skirt, I knew he wasn’t feeling well. His positive attitude about things helped us both focus on the important things like our love, our friends, going to a good movie or just laying in bed holding hands and watching tv. We were married for 18.5 years, while his cancer would ebb and flow against the chemo . He passed away April 3, 2020.
We have an amazing set of similarities although I am much older than you. Three years ago I had a stroke which appeared to be caused by a strange brain tumor. It was originally thought that I had needed brain surgery immediately and to everyone's surprise it was benign. The MRI's I needed revealed a pituitary adenoma but it didn't seem to be causing a problem and we have been watching it annually to see if it grows. So far it hasn't but I am scheduled to take another MRI in a few weeks. I'm keeping my fingers crossed. I also love photography and many years ago developed a reputation for making killer Fujifilm slides for artists trying to get into seriously juried art shows. Nowadays juried artwork is all digital. Afterwords, for some unknown reason I developed eye problems but the doctors could not find anything wrong so I just gave up on my photography and my life took a different path. I did see a hormone specialist recently who is focused on my pituitary said I was low on testosterone and cortisol and recommend I take a few supplements to help with my fatigue and energy and I think they might actually be doing something good. My doctors still do not know what originally caused my stroke and seem to be zeroing in on my heart but my heart tests all seem to come back normal so they keep monitoring me. They throw around words like AFib and cholesterol and really expensive drugs but they don't really know. The surgeons and hormone specialist told me the adenoma is not pressing on my eye nerves which is what they are watching closely. I personally think this has something to do with the Covid shot and boosters. I am a Chemist and I think they rushed this extremely dangerous and untested RNA/DNA on all of us just to make a lot of money and said to hell with unknown side effects. Maybe I am being too critical. Thank you posting your story. I hope your surgery goes well and don't be afraid to ask the surgeon how many of these types of surgery have they performed and the success rate.
Let me preface this with, Jesse, you do not need to reply to this comment. I understand it's rough just to read it but I cannot not say again how freaking amazing your outlook is in facing this adversity. I am dealing with (not even major) complications from surgery I had in October and my outlook has just been sh*tty. I have mobility issues and pain, but nowhere near what you are experiencing and I have been b*tching and moaning and complaining. Letting it get me down most days. Every once in awhile, I do remember to be grateful for the positive gains I have made. I need to find more gratitude for what this can be teaching me.
I find what helps is take 5 minutes of your day to feel sorry for yourself, have a cry, and than put it in your mind that you will continue on with your day, and try not to let your situation keep you down. hope this helps. When I go to the hosp I always see someone else that is worse off than me, and it gives me a dif perspective.
Jesse I genuinely think that your flow of consciousness and array of thoughts that you share are perfectly natural on such a life-changing topic. With matters of such impact like this it is only natural for our brains to jump and approach the topic from multiple angles, and it is normal to struggle with staying on one path/train of thought, because, as you are more than aware, this doesnt just impact one facet of life, this completely reframes your entire perspective, routine, behaviour, and more. This goes for those with or without fancy accessories like, for example, your gender-yet-to-be-determined brain-tumor. You make understanding and being able to relate to a topic that many may not have means to relate to into a very palatable and easy-to-digest sort of subject, and provide a really true and deep honesty with a heavy side order of vulnerability, and that takes guts. And make no mistake, I don't mean you make it easy to consume - no, this is a heavy matter, but you don't cloud the waters with bullshit, sensationalism, hype, narrative or the typical click-bait lure that others squeeze till the very last drop. While I get the sense that, as a photographer by nature, your comfort zone is behind the lens vs infront of it, you are very well spoken and explain your perspective (and your perspective shift) with great clarity, even if you feel like you are rambling. There is a truth to allowing yourself to let the words flow unfettered and uncensored, and much like your newer "give-less-fucks" stance to immaterial matters, I really hope you embrace this raw style, because it offers something real. Something tangible. Something relatable. Something that stays with a person, and echoes in their daily thoughts & reflections. Thank you for not only allowing us to get a glimpse into your life, but also one of the most difficult chapters you have/will face, and for being brave enough to share the highs and lows of it all. P.S. I hope you held a ceremony before or after your beard-shearing, followed up with a somber burial in the pee-pee-poo-poo garden. Perhaps the stellar's jays or Osprey could raise the new generation in a nest constructed from your wooly wonder! I will miss your womb-broom, crumb-duster, bird's-nest, chin-scarf, face-fro, neck-parka. and I will be sullen until it is blooms again. The only thing that reassured me is that in true mountain-man fashion, I envisioned you shaving it off with your favourite splitting axe, bare chested, in the woods, as bears and wild turkeys watched in awe. A scene out of a Disney movie, indeed.
Thanks for making these videos. I understand that everyday stuff does not seem as important as your health but money still is important. My biggest fear is that we'll have another shutdown because of a pandemic and my business will tank. I'm so afraid of having to live in my car with my 3 dogs! Most people are one paycheck away from being in a situation like that. I'm in the San Francisco easy bay area and it's insanely expensive to live here. Food, gas, my mortgage, utilities, water are soo much higher than other states. I'm hoping I can make it a few more years then move away to a cheaper state to retire. Praying that you get your disability payments soon, and back disability too, not just from when you were diagnosed. Hoping you can get retro payment for the whole year! Good luck on making the partner program, I'm watching all your videos!🐻
Just popping into Jesse's comments and wanted to say how much I, and we, appreciate you Karen 💙 Completely hear you on the "one pay check away" situation, and can relate to thinking about what it would be like to live in your car with your three doggies - the thought has also crossed my mind more than once, too!
Placebo effect. You believed he could help and it worked. This often happens when I take a Tylenol.Within 5 minutes pain will be gone and no way can it work that fast.
