Second Helpings.

Chef Dave Del Rio

 There is this local restaurant, "Eaton’s Beach Sandbar & Grille". It is located on the banks of Lake Weir. If you want the best pastrami, or the best shrimp and grits, or anything in between, this is the place to go. But you better call ahead, because there is a wait on the weekends. It really is that good. Great food, relaxing casual atmosphere, and you were always guaranteed a table visit by Dave - executive chef and owner. Eaton's Beach has won most of the local culinary awards for the past few years, often besting the finest of down town five star dining establishments. This year was no exception. Last month was "Taste of Ocala", a black tie fund raiser event where all the local top restaurants compete for awards. The monies go towards the college scholarship fund. The jazz band that I play in was hired to provide the night's entertainment. Once again, Chef Dave Del Rio took top honors. From the stage, I could see him - in his trademark hat, proudly walk up and accept his awards on behalf of his staff. Two weeks later, Chef Dave died at the age of 62 from a sudden heart attack. Just like that. One second he is at the top of his game. The next, gone.
 http://www.ocala.com/news/20170324/friends-staff-and-diners-remember-chef-dave-del-rio
No second chances. No do-overs. No extended play. No refills. His time on earth just abruptly ended.

So my last blog entry left off with me about to have my first post treatment PSA test. Well, that is over with, and the final results are in. But first a little side bar. Fun fact - I am deathly afraid of needles. To this point in my life, I barely have a 50% success rate at not passing out on a blood draw. Seriously. My biggest fear surrounding my prostate surgery was the I-V line. When I had to get two simultaneous hormone shots in the stomach, there was almost a complete throw down in the doctor's office. To this point, I have managed most of my PSA tests by closing my eyes, looking away, and gritting my teeth hard enough to make my ears ring, until the nurse physically takes my other hand and places it on the cotton ball - my signal that it is over. I am not exaggerating. It really is that bad. This time, about a week before my blood draw, I decided that I was going to watch the whole thing - come hell or high water, I was going to do this. I decided that I would prepare for this feat by watching you-tubes of blood draws and phlebotomist training videos. That actually worked. I was able to watch the whole thing, and stand up and walk out. I don't know why that became so important to me, but it did. And I am oddly but shamelessly proud of myself for that little personal success.

Yea, I know I have tattoos. but that is different. Much different. To me, anyway.

So, on to my results. After an excruciatingly long week of waiting, my PSA came back as undetectable (<0.02). Finally. I can exhale a little. I met with my doc, and after acknowledging the good news, we discussed a game plan and options going forward, should my cancer resurface. He is going to send tissue samples saved from my surgery for a new test called a decipher test - that uses genome sequencing to determine types and probabilities of recurrence. He also mentioned the possibility of clinical trials that are focused on my particular rare form of prostate cancer. All of this was a little bit of a buzz kill, but I also appreciate his proactive approach. Anyway, my next PSA is in September. Meanwhile, I get a reprieve. A chance to go back for second helpings, if you will.

There has been a lot of water under the bridge since I was initially diagnosed, and there are a lot of things that I still don't understand. A lot that doesn't make sense, and probably never will. I have no idea what caused the cancer to start with. Even within the community of men fighting this cancer, there seems to be so much unexplained randomness in how we each respond to the different modes of treatment. And how those treatments take a toll on us by way of side effects. The thought of chemotherapy petrifies me beyond words (see my above take on needles and I-Vs). Yet there are brothers in this fight that have weathered chemo only to have lupron knock them for a loop in much the same way it did me. That blows my mind. Some come through surgery without any loss of continence, yet for others, it is a battle of months or years. Radiation is a minimal issue for a lot of us, but for some, it causes major issues. There seems to be no rhyme or reason. Why some of us get to take a reprieve, and others do not. There are so many that I have met on this journey - brothers that I have fought along beside, and leaned on for untold emotional support. Some have already responded well and moved on. Others are fighting their asses off every day, hoping for their break, while congratulating me on mine. Yet there are some, as I write this, are in the final stages of their battle, having come to terms with the imminent conclusion of their decades long fight. I am indebted to them all for the life lessons that I have and continue to learn from them. Not to mention their unwavering friendship, support, and love.

Then there is Chef Dave Del Rio. He never had a chance. Not a single day to get things right. To say what he meant to say the day before. Neither did Gardner Spencer - my neighbor that got me back on the bike after my surgery, back in the beginning of this Journey. We went for a ride the day I found out that surgery did not work, and that I would need follow up salvage treatments. He was killed four days later when a truck veered into the bike lane and hit him. No previous diagnosis of any kind for either, yet their deaths seem to somehow bracket this phase of my journey. Both stark reminders that a cancer diagnosis is just that. A diagnosis, and not necessarily death sentence. At least not at the onset. Someone on the online support group I follow said "Cancer is not a death sentence, it is a life sentence". I like that. I guess that it is up to us how we choose to live out that sentence. Many people never get that option.

There is a lot that I can not begin to understand, but one thing I do know is that this opportunity I now have - whether it lasts 5 months or 5 years - is a genuine gift and blessing. It marks the beginning of a different phase of my journey. Instead of actively treating cancer, I get the opportunity to regain my strength, and once again try and experience life without directly looking through the "lens of cancer"(I believe Mark Bradford, one of my brothers in this journey, originally used that phrase to very aptly describe life with cancer). There is no doubt in my mind that I need to take utmost advantage of this gift.

    It is also, I think, an appropriate time to bring this particular blog to a close. Not because I think I am done with cancer (or writing, for that matter). I am many years away - if ever - from being able to consider that. I also know that despite my best attempts otherwise, the nagging thoughts of "when?" will never leave. I also know that I am forever changed and can not go back to before. Nor do I want to. But I do need to frame the next part of my journey in its own perspective, and not waste any of it worrying about all the possible "what if " scenarios. I can't do anything to change how long my cancer will or will not remain dormant, but I can make damn sure that my plate is clean when the time comes. No regrets. No should haves. No excuses.

   I would like to thank everyone for reading along. If you want, you can find the blog in it's entirety here: http://gettingtoquetico.blogspot.com/ Feel free to read and share as you see fit. I look forward to creating a follow up blog in the future. A blog about Living. Not about cancer.  In the mean time, I see that there is a big ole plate of life left in the kitchen, and it is still warm on the oven. I think I will go grab my self of a second helping or two. And maybe some mashed potatoes as well. I love me some mashed potatoes and gravy.

The End.

About Dental Hygene. Brush & Floss Daily.

So, Just what in the world is tooth care doing in the middle of a blog about prostate cancer? Don't fret, I will be "filling" you in on that shortly. (See what I did there?)
       Well, It's getting that time again. I am about two weeks out of my next PSA test. Time to renew my three month lease, and see what changes were made to the contract.  I find myself doing the same thing that I have done on all the previous times, almost like some sort of bizarre ritual. I pull up all of my pathology reports and read them once again, because maybe - just maybe- I missed something all the countless times before that I read them. When I am done with that, I turn to google, and run different variations of the basic searches that I have always done. "prostate + cancer + ductal", or "ductal + adenocarcinoma". Sometimes I add the word metastasis just for some added fun. Then I re-arrange the order of the search words and repeat. But regardless, the same old hits appear that always have. So I read them all again. One always hits close to home. it involves a case study of a gentleman that required a urinary diversion surgery (ileal conduit) when his PC spread into his bladder. My father had to have that surgery when his cancer hit his bladder. He passed soon after. That was 2008.
      Once I have exhausted all of that, satisfied that there are in fact no new nuggets of information, I start playing the what-if scenarios through my mind. What if it goes in my favor - or - what if it doesn't? I wish that I had the mental fortitude to not put myself though this again, having done it so many times before. But this test is different. Then again, aren't they all? There is the first test after surgery - or the first since starting hormones - or the first after finishing radiation - or the first after the radiation has done all it's going to do. Maybe one day, they will be routine. I sure hope so. Not this one. This one is most definitely different. I have been off all treatments since December. I took my last 4 month lupron shot in August. I am actually starting to feel a hint of normalcy. I am not tired all of the time. The brain fog has lifted, and my stamina is returning. I am starting to enjoy things again, instead of just going through the motions.  I sure hope that I don't have to go back. My wife and I are going on our first cruise in June. Then I am going to hike the Camino De Santiago with my daughter in 2018. I want to be able to truly enjoy those experiences without the mental and physical veil of hormones. It all hinges on this test. Yea, this one is different. For sure.
      So back to my teeth. Yesterday was my six month appointment with my dental hygienist and check up with my dentist. You know the deal with getting your teeth cleaned. About a half an hour of probing, the ultrasonic water needle that winds up hurting my ear from the pitch more than my gum line, all the while staring at a light of sun like intensity. Meanwhile, the suction device is stuck, leech-like, to the inside of my cheek, and Barry Manilow is crooning in the background through the scratchy overhead speaker.
      With the scene properly set,  I can tell you the the cleaning went pretty smoothly. I have been pretty consistent with my daily brushing and flossing, so there was no need for Beverly, my hygienist, to turn the cavitron up to eleven. In fact, a couple of times, I began to doze off in the chair while she was working. (It's a trick I learned in the Navy many years ago - never miss an opportunity to take a nap). She finished up a couple of minutes early, so we chatted a bit while waiting on the doctor. It gave me an opportunity to respond to some of the things she asked me about while I had a mouthful of dental instruments and fingers.
     Enter, the dentist! (insert theatrical soundtrack here). Actually, my dentist is pretty cool. As a result of my RP surgery, I had to have an emergency root canal attempt that eventually became an extraction. As it turns out, some people bite down really hard while under general anesthesia. I am apparently one of those, and I guess the mouth wedge became dislodged during surgery and I clamped down really hard on the intubation tube and cracked a tooth. (that explains why my jaw seemed so sore after surgery). About a week or so before I was due to start radiation, it abscessed. She took lead on making sure that the endodonics group took care of me prior to radiation treatments. She even called me at home on a Sunday afternoon to make sure all went as planned and wished me luck on my treatments. I really appreciated that.
     Anyway, back to the present. she began doing a through oral evaluation - which including messing with my neck (I hate that), while I open and close my mouth. Then she began a visual inspection of my gums for general health and any sign of oral cancer. That is when a "thing" caught her attention. On my gums behind my back top tooth, she saw what she described as a "small brown flat freckle". She finished the rest of her evaluation and then went back to it. "It is probably nothing, but let's get the camera in there, take a picture of it and keep an eye on it on your next visit, just to make sure it is nothing more." Well, shit. As a practical matter, it is probably indeed nothing, and most people wouldn't give it a second thought. But I am not most people. I am a guy that has spent the past couple of years fighting a particularly aggressive form of prostate cancer. So yea, my mind went there immediately. In a New York minute. As did Dr. Google, as soon as I got back to the office.
     The Doctor finished up and left, as I kept studying the picture of my gum freckle - now displayed on the computer screen. Beverly saw my concern, and tried to reassure me. "Don't worry about that thing!. To me, it looks like you bruised it eating some sort of crunchy food or nuts. " OK. fine. I'm sure that's all it is. Nothing more. Right? Right.
      As she started scheduling my next appointment for September, she told me that it wouldn't be her. She will be retiring in July. What? She has been my hygienist since around 2000. Now, there are many things much more pleasant than getting your teeth cleaned, But it was nice to have a consistently friendly and professional person there that really seemed to care. Someone who took the extra time to get to know her patients.
     Thank you, Beverly, for all of your efforts. Enjoy your retirement. I am not looking forward to getting accustomed to a new hygienist, but change is inevitable, I guess.
     Walking back to my office, I couldn't help but notice how beautiful the day was. It had been cold that morning (In Florida terms). About 28F. It was now noon, and had warmed up to the 50s with a nice breeze that felt invigorating. Perfect clear blue sky. The birds were very active, perhaps due to the weather. I decided to take the long way back, so that I could take it all in. All in all, I feel good. Once again, I feel reminded to appreciate every day for what it is, and the people around you for who they are. Because change will happen. It is inevitable. Meanwhile, it is great to just be alive.

Tales From The Other Side

Spot, my fun loving prostate & drinking buddy

It has been three months since I officially stopped taking Lupron. My last 4-month injection was on August 9, 2016. I was due one more in December, but made the decision to forego it and see if I could hold a zero on my own. It is a catch 22. Although my PSA has remained zero since June, there was no way of telling whether it is from being cancer free, or just the Lupron suppressing it. When both my Oncologist and Urologist confirmed that whether or not I took one more shot would have no effect on my ultimate outcome, it seemed pointless to blindly subject myself  to another four months of this crap. I wanted to find out where I stand. The worst case is that I go back on it if need be, but I had to know.
I just had to know.
That was December 12th, based on a blood work from December 5th.

My next data point would be my annual physical - Due in January. I requested that a PSA and Testosterone test be included with my blood work. The results of that test (Jan 3rd) revealed that my PSA was still undetectable, and that my testosterone had already recovered to 143. Still way below normal (>250), but a lot further away from chemical castration levels (<50) than I thought it would be for only being one month out. Hell yea, I am going to rid my body of this poison in short order and get back to normal.
Or not.
That blood work also revealed something else. My cholesterol levels were through the roof. 384. As it turns out, one of the value added bonuses of hormone therapy for me. I have always had to watch my cholesterol, but could always manage it with diet and exercise. Not any more. I am not taking statins to manage that. Cheeseburger, anyone?
   So, how does it feel to be off of Lupron? As much as I would like to say that is just amazingly awesome, it really is not. It is more of a mixed bag, for sure. I can say that the hot flashes are all but gone. That is a good thing. I have more energy some days. Things are starting to wake up "downstairs". Hell, I even had what might pass as "morning wood" on a couple of occasions. All good stuff. Probably the most noticeable difference is my body's response to exercise. During strength training, I am actually starting to feel that pump again. The muscles are actually responding, as opposed to just getting tired. That feels good.
The brain fog is lifting, and I can focus better. A bit more mental clarity. it is a good thing, but it is also allowing me to finally see just how much of a toll this journey has taken. Just how much it has impacted my life, and the lives of those closest to me. make no mistake that every aspect -both  personal and professional - has taken a huge hit. Some days, I feel like a stranger in my own life - if that makes any sense.
When I was in the Navy many years ago, I was single, but the married men would mention how hard it was to return home an extended deployment and try to re-fit in within their own home. To get back into a normal routine. Their wives/families had, out of necessity, continued to go on with their lives with their spouses out of the picture for the better part of a year. Playing catch-up seemed to be a hard thing. Some did not succeed. Nobody's fault really..life goes on with or without us. I think I get that to some extent now. I guess that I can take comfort in the fact that should this thing go south for me, others can manage. In the meanwhile, I got work to do.
  Most anyone that has gone onto hormone therapy will recall the mood swings that occurred - mostly in the beginning for me. Well guess what? my experience is that they come back as the Lupron wears off and testosterone re-enters your body. But they are different going this direction. The first time, most of my swings were towards sad. Crying moments. This time, they were more tinged with anger and darkness. They seem to have subsided, but a few were doosies. I don't want any more of those. That is for sure. If you think about it, it sort of makes sense that mood swings would happen with the re-introduction of testosterone. It's like puberty all over again. But without the Farrah Fawcett poster.
  And there is all the physical stuff. "The Wall" still exists, in all it's glory. The other night I was grilling steaks for dinner. Out of no where, I was exhausted. I finished them, put them on the counter, and went to bed. It wasn't even 9pm yet. I slept through until 7 the next morning. Stamina is still a big issue. I get tired way too easily for being 52 years old. I think my joints are feeling better, but my weight is still going up for no reason..not to mention the unnatural distribution. Perhaps I am expecting too much too soon. They said it would take some time to wear off. I guess I thought I could prove "them" wrong.
All in all,  it feels good to be off of it, even if it is such a mixed bag. I have no idea how long it will last, but I plan to make the most of it as long as I can.
Back in December, on separate appointments, I asked  my oncologist and urologist the same question. "What are the chances of me not needing more drug therapy?" Neither one was able to maintain eye contact. All I got was "let's see how it goes", & "take it one step at a time" as they purposefully studied at their note files.
Next PSA test is in a month, so we will see. Such is "life on a 3 month lease".
But I had to know.
However it goes, I just had to know.
#thewolfwillsurvive