Why Not Me?

No little mutant cell is going to push me around.

I don’t know how the story of my fight against cancer will end. Nobody knows. Doctors can estimate and give statistics, but they don’t really know. We have the power to affect our lives every day, illness or not. We can make things better or worse. Whatever difficulty comes our way through our doing or not, we can make it better to some degree. The human mind is very powerful, especially with respect to the body it’s integrated into. It’s not magic when we make things better, it’s positive thinking activating our innate abilities. We can activate our body and mind toward better health and clearer thinking. It’s looking for opportunities and doing the best we can every day. It’s knowing that some days the best we can do is rest and rebuild. We are energy. It is our energy and we may decide how it is used. Positivity makes our life better, no dispute. When we think and act negatively, things rarely go well. At least not for long. We can’t always change our lifespan or undo what is done, but we can make sure we are being our best selves in the only time that really exists-the present moment. We are in charge of what we feel and how we react to challenges. This is the story of my time with cancer and what I’ve learned from the experience so far.

“Almost impossible that this is cancer,” said the doctor, “Prostate cancer doesn’t move that fast. Your PSA (Prostate Specific Antigen) was low normal this month last year. It is almost certainly a prostate infection.”

And that’s where this voyage was launched. It was March of 2019. Well, my very competent doctor was not right this time. Treatment for infection resulted in an even higher PSA three weeks later. The lab had missed the order he wrote for the PSA test. That’s the main test these days for early detection of prostate cancer. His nurse had already called me to say my blood work was all very good and she’d see me next year. The doctor caught the missing results and then called me personally to make sure I got not only the apology for the mistake but also the information of how important it was that I drive back over and give a new blood sample for this very important test. A few more months of this particular cancer running unchecked could have made a tremendous difference in my ability to fight back. I believe my doctor’s diligence saved my life. I was annoyed about having to come back. I almost dropped it. I was busy trying to finish a kitchen remodel before a long-awaited fishing trip with two of my very closest lifelong friends. I wouldn’t have cancer anyway! Other than orthopedic pain, I felt great. I do hours of Yoga every week. I walk, use the elliptical trainer, lift weights. I eat fruit and vegetables by the pound. I don’t smoke, I rarely eat red meat, I drink very little alcohol. I meditate, I practice Thai Chi. Annual physicals. Ayurvedic care, Chiropractic care. I do everything just like I’m supposed to. Right? As it turns out, that’s all well and good but it does not exclude one from cancer nor many other maladies. It does give a person a better place to start the fight from, though. Additionally, it lowers the probability of getting sick. The cancer was classified the most fast-moving kind they can identify. They use a tool called the Gleason Scale to measure the aggressiveness of a prostate cancer. This is a 1-10 scale. I had always wished I was a “10” at something. I got my wish. They gave me maybe 5 years since I was not too terribly old yet and was otherwise healthy outside of the orthopedic issues.

I had always had a plan for this type of thing: Suicide. I decided years ago that I would never put my family and friends through the difficulty of watching me slowly melt away. I still had some hope, though. It seemed to have been caught early. The good PSA score just 365 days earlier made that a real probability! Wrong again. The scans showed cancer spread to my Lymphatic system and bones. That makes it stage 4 cancer. Probably caught early chronologically, my doctor agreed, but it had spread. I didn’t know how much. I hadn’t even seen the oncologist yet. Only my primary care guy and the urologist. But when I heard cancer and bones in the same sentence, I thought it was all over. My poor wife, I just couldn’t do it to her. I told her my plans on the way to the car. I knew California allowed assisted suicide and I would waste no time arranging it. This time it was my wife’s turn to save my life. She let into me but hard! Suffice to say, I agreed to wait and at least talk to the oncology doctors. My wife is a Nurse Practitioner. She knew giving up was about as senseless as one could get in this situation. I didn’t have enough information to make any type of rational decision about my way forward. Apparently pre planning is only effective if you actually know what you're talking about. I knew nothing about cancer and was totally unaware of the huge progress being made.

Sad part over! Doesn’t seem too likely, does it? Now should be where I start describing my slow descent into illness. Instead, I’d like to tell you about my quick ascent into what has become the most centered and calm part of my life. The oncologist had to shoot straight with me. It didn’t look good. However, thorough person that she is, she also had to say that there was a very slight chance that I could be one of the very few who beat the odds and live for quite a long time with stage 4 cancer. No promises, but……..

Oh? Really?

Hope! That was just what I needed. I was always one to try to beat the odds when it suited me. I never thought the stakes would be quite this high, but what else did I have to do? Why not me? This was my new job. I was about to retire anyway. Carpenters with arthritis and bad feet tend to fade away or become cranky bosses. I was already the cranky boss of my one man company so I was done. This fight was shaping up to be just my style. I needed time, patience, positivity, and persistence. That’s what I do. Positive thinking is my strong point, or it had become so as I aged. I had modern medicine and one of the top cancer centers in the world. Kansas University Cancer Center. I felt I had tools. I had a chance. I decided then that cancer may kill me eventually, but it was not going to kick my rear up and down the street for the rest of my time on this planet. I would take it one day at a time. Make every day the best I can. From that day until the day I lay on my death bed I was going to do what I always tried to do: Have fun and try to be useful. Whether it was to be one year, five, or longer, I would live as well as I could. My wife was with me 100%. Tough as nails, that girl. I loved her more than ever. She was holding up like she’d done this 20 times before and won every time. Nurses are a special breed. All this is not to say I wasn’t absolutely terrified. I was very scared of how it would go and when it would start getting difficult. Would I hold up as well as I planned to? Could I be one of the few? There was lots of emotion. I never cried so much in my life. With the support of my wife and extended family and all my friends, my oncology and other health care providers, and a few people that just happened to overhear me talking about it and offered their support, I started to get more and more of a feeling that I really had a chance to make the best of this situation and possibly beat the odds for quite some time.

My love affair with CHEMO!

First line of defense for prostate cancer is Androgen Depletion Therapy. Goodbye testosterone. This is accomplished , in my case at least, with shots every three months. It is surprisingly easy to get your male hormone level down to an undetectable level. It didn’t take long at all. Once those were under way with no difficulty it was time to make some new friends up in the treatment area of the Cancer Center. As I marched forward into that strange new land, all the while issuing veiled threats to my wife that I may want to start sharing her clothes, it was time to start Chemotherapy. Intimidating, oh yes. However, my rock-solid oncology nurse assured me that for many people, chemo isn’t that bad anymore. Due to my otherwise good health, she thought I would do just fine. They have figured out the dosing over the years, so they don’t have to totally bombard you with the meds. I know very well now that it is still quite difficult for some people. I volunteer weekly in the same treatment area where I had chemo and still go for my shots every three months. It’s no picnic I assure you. However, adding more hope to the mix, there are more and more new treatments coming out for prostate cancer and lots of others. But we hit this cancer with a time honored and typically very effective medicine called Docetaxel. I was already getting shots for the hormone depletion to starve the cancer and the chemo was to attack and destroy the existing cancer cells. Docetaxel scared me a little bit, but I tried to make friends with it. It’s hard to cuddle up to something the nurse wears layers of protective equipment just to handle in it’s bag en route to your entire body. I held the little tube where it came down off the pole into my chest port like it was my second best girl. My best girl was with me the whole way, of course. Just for fun, I wore a different Hawaiin shirt to each treatment and Mrs Slow Joe was always there. We’d play cards and tease the nurses and coo at the Docetaxel like it was a magical new friend, which it was as you shall see. After the last of my six chemo infusions, they let me ring THE BELL. I rang it as hard as I could, I couldn’t actually see it through the tears, but I could feel it to my heart and bones. Everyone clapped and smiled for me. They all signed my graduation paper and gave me a beautiful little bell which I still ring every day.

But now, it was time for another scan. Did we do much of anything with all that? I had gotten through it pretty comfortably other than a few days in the hospital while they got my white blood count back up to a safe level. I had as much fun as I could and exercised daily to the best of my ability that day. I met some amazing people up there on the cancer floor. I received heart melting love and kindness from the staff. Cancer nurses are the purveyors of hope and the guardians of dignity. All nurses really. They are the heartbeat of Western health care. I learned true toughness from the other patients. I didn’t get to visit with too many patients because of my own low blood counts but at a distance and masked up I spoke to a few. The staff let me come out and walk laps around the unit every day. Seeing what some of the other patients seemed to be going through let me know that I could be doing a lot worse. I had to admit to myself that sometime in the not-too-distant future I could be in a situation similar to theirs. The new set of scans were very worrisome to me. I had no idea what to expect. I had an MRI and a Nuclear bone scan. Most of the tumors were gone from the bones. The Lymphatic system was clear. The chemo had worked very well. I learned later that more aggressive cancers often get better results from chemo because it’s easier for the medicine to find the bad guys and wipe them out.

Now what?

Now we wait. The PSA is the main indicator they used to gauge my stability. The PSA alone doesn’t mean much of anything. It is just an indicator that can tell the oncologist if they should run further testing. As the weeks went by and my PSA was ranging from .01 to .03, they let me know that if the number stayed under .2 for seven months or more after chemo it was usually an indication that I had better odds for a longer than average survival period. I was below .2 for way longer than seven months. Four years later I’m still at .27 though it occasionally goes just over .3 then falls back, so far. I was just getting back up to full strength when Covid 19 hit. My last Chemo infusion was the first week of January 2020. Ten or so weeks later the world changed. I had just been approved to volunteer in the cancer center. The day I was to get my ID badge made was the day they shut down all volunteer services. I had to wait through Covid but I finally got to start my new volunteer job. I am very honored to work in the Treatment area. I have a cart full of snacks and drinks and along with dispensing those treats I can chat with the patients that would like to visit. They are very often very open to me when they find out I am a patient there as well as a volunteer. We are all looking for hope. I learn from them and try to share what information I have in return. This is my cancer support group. I do my best to encourage them. I don’t dispense any medical advice, naturally. Just encouragement and good wishes. We do discuss the habits of general good healthy living. They ask me what I do to take care of myself and I tell them. Staying as active as possible and with whatever help can be attained is vital in my opinion. Mental and physical activity and support are available. But more importantly, I try to help them understand that there is hope and that they can advocate for themselves and affect their comfort and energy level through positive activity and attitude. I believe my story is a case in point. Maybe my good results to date are just good luck and good medicine, but I’ve not found anyone yet that doesn’t think as I do about our ability to positively affect outcomes to some degree.

Every person and every cancer is different. Each person’s version of good self care, within some basic guidelines, is attainable. I want them to know that they don’t have to take this lying down. Similar to my statement above, cancer may eventually kill me before I can kill it, but it can’t break my spirit. I choose life and love.