Monday, March 27, 2017

The Other Side Of The Coin

Every time I write a post where I share really good news, like my last post, some seem to get the wrong impression. Some see a PSA number as low as mine and think it means I'm all better. I'm not. They think it means I can do all of the things I used to do. It doesn't. It means just the opposite. So I felt that I needed to share the other side of the coin. The cost for that great number.

The "impossibly" low PSA number I talked about in my last post was actually old news. I first told that number in a post from March 10th titled More Good News. But I can't expect everyone to read every post, or remember every detail. So many reacted like this was breaking news. But my intention in writing Flight Of The Bumblebee was to try to explain why my number is so low; .06 when I'm Stage 4, have a very aggressive cancer, and still have my prostate. If you've read the post, you know what my conclusion was.

But I know that my oncologist would not agree with my conclusion that it must be the cannabis oil suppositories, in combination with Lupron and Xtandi that's giving me this number. He'd say it's hormone treatment alone. So, for the sake of this post, let's say he's right. Let's stipulate that cannabis oil is doing no more than helping me sleep. Which would be reason enough to do it right there. Ten hours of sleep per night can only be helping. But if my doctor is right that it's the combination of Lupron and Xtandi that's driving my PSA so low, it's important that you understand what that means. Important to me, at least.

If hormone treatment itself is responsible for my good numbers right now, it means a few things. First, it means that, no matter how good my results are, I keep getting weaker. I'm not all better. Just because my numbers are good right now doesn't mean I can go back to doing the things I did before. In fact, the very treatments that are keeping my PSA so low are the ones that are making me so weak. And I keep getting weaker every day, despite my best efforts.

I especially get the reaction that I should be able to keep going because of my good numbers from my friends who want me to perform. They seem to think that, because I'm doing well today, and feel good most of the time, it means that I can keep doing all of the things I used to do. I understand how you feel, but you need to understand that the good numbers now come at a significant cost. It's a cost I describe in my post The Price Of Energy.

Being on hormone treatment is not like taking antibiotics to get over your bronchitis. There aren't a limited amount of pills for me to take, and once I've taken them, I'll be good as new. It doesn't work that way. Which leads me to my second point.

If hormone treatment alone is responsible for my good numbers, it means I have to stay on it for the rest of my life. Or at least until my wife, my team and I decide it's time to move on to palliative care. If I ever go off hormone treatment, my cancer will come roaring back in very short order. Again, assuming my oncologist is correct about what's working. That means that, for whatever amount of time it remains effective, I have to stay on it. For all of that time, however long that is, I'll keep getting weaker, and my endurance will keep shrinking.

And third, if it's Lupron and Xtandi that are doing this, it means it's a temporary solution. Not only am I not "all better," I never will be. I'll enjoy the low PSA number for as long as I can, but inevitably, that number will begin to rise again. And when it does, Houston, we have a problem.

And all the while, even while my numbers are great, my strength and endurance will keep getting worse.

I saw some friends recently who had mistaken impressions about all of this. They thought my low numbers meant I could keep doing what I've been doing. They thought my desire to stop running the show was based on thinking I wouldn't be around that much longer. But that's not what it means at all. What it means is that I no longer have the strength or endurance to do that much anymore. And it's not going to get any better. It will only get worse.

When I was first diagnosed in August of 2015, and had my first Lupron shot, I was still able to perform (and prepare for a performance, which is the real energy drain) at the same level I did before. The effects of Lupron were pronounced, but my strength and endurance were pretty much unchanged. So the musical event I participated in that fall was no problem for me. This past year, however, I was much weaker, and had much more trouble preparing for this past fall's same annual event. I realized that the big plans I had for 2017 would not come to pass if it was up to me to make it happen. I just don't have the energy.

That was what I meant by calling my last big public performance my "swan song." I didn't mean that I'll never get on stage again. I meant that I'm done putting bands together and being the boss. I'm done running the show.

Many of us are aware of what's known as "The Spoon Theory." It was conceived by Christine Miserandino at My friend Dan Cole condenses the theory very well in his blog post, The Spoon Theory, Fat Gills and the Food Police. But let me see if I can condense it even further for any who may not be familiar with it.

The idea is that, if you have a chronic illness, you get a certain number of "spoons" per day. Spoons representing the amount of energy you have to give. I think the analogy would work better with money, but Ms. Miserando came up with the idea in a restaurant, so it's spoons. Each task throughout the day costs one spoon. Once you run out of spoons, you have to stop. If you keep going, you need to borrow spoons from the next day, which compromises that day. Some days, you get up, and there are only a couple of spoons in the drawer. Other days, the drawer is full. It's as good an explanation of what it's like to be on hormone treatment as I've heard.

The cruel variation on the spoon theory for those of us who are on hormone treatment permanently is that each day, there are fewer spoons in the drawer. One day, there will be no spoons at all. Then, I won't be able to do much.

Of course, if you read my last post, you know that I'm hopeful that it isn't just hormone treatment that's giving me these great results. If that's true, maybe I will be able to go off Lupron and Xtandi at some point, and I eventually will be "all better." But not today. Not this year, or next. As long as I keep taking my horse pills and getting my shots, my ability and desire to do the things I used to do will continue to wane for the foreseeable future.

But the good news is, I still have the ability and the desire to do some things I love to do now. I will continue to work with the kids for as long as I possibly can. That gets me onstage a little, and it's a great way for me to keep my voice in shape and keep doing music on some level. But that's not why I'm doing it. I'm doing it because I love my friends and I love those kids. I don't regret my decision to stop being a bandleader myself, but it will be a very sad day for me when I can't mentor those kids anymore. I get more excited and motivated about that than anything else I'm doing right now, except for what I'm actually doing right now. Writing this blog.

I'm sorry if I gave you the impression that my cancer is cured. If my oncologist is correct, and hormone treatment is what's keeping it in check, my cancer will never be cured. And every day I'm on hormone treatment, the less weight I can lift, the more careful I have to be, and the more rest I need. That's why I have to stop running the show. That's why I've lost all desire to be in charge.

While I'm as grateful as I can be for my good number, and for the fact that I'm not in pain, the very treatments that are doing this for me are the ones that are pushing me to the sidelines. Please try to understand that. I'm not all better. That's the other side of the coin. #waroncancer

Thursday, March 23, 2017

Flight Of The Bumblebee

I like bumblebees. I like them for a couple of reasons, one of which is they're not aggressive like wasps or yellowjackets. We have a problem with yellowjackets here. I put out one of those yellowjacket traps every summer and catch hundreds of them. They're very aggressive, and can sting you all they want. And they want to very much.

Bumblebees, on the other hand, like honeybees, can only sting once, and then they die. So they're not very aggressive, and only sting at utmost need. I can water flowers or vegetables that a bumblebee is pollenating, and never have to worry that I'm gonna tick the bee off and get stung.

But that's not the main reason I like them. I also like them because of the old saying that it's aerodynamically impossible for them to fly, because their bodies are too big for their wings. But they fly anyway. This idea has never been proven, by the way, and has now become something of an urban legend. But never let the facts get in the way of a good illustration.

I asked a question in the support group I participate in most today. I wanted to see if there was anyone in my condition with a PSA as low as mine. Here is the question I asked:

I have a question for the guys here who are Stage 4, Gleason 9, on HT only, haven't had chemo, radiation or surgery, and so still have their prostate. Especially those on Lupron and Xtandi. What's the lowest your PSA has gone? Mine at my last test was .06, which seems an impossibly low number for a guy with all of those factors. Has anyone here had a number that low after not having had surgery, chemo or radiation, and have had HT only for treatment?

HT being hormone treatment. So far, nobody with all of those factors has reported a PSA anywhere near as low as mine. Some of my brothers have said they can't imagine having a PSA as low as .06, especially at Stage 4, and still having their prostate. It seems like an impossibly low number for a guy with all of my factors; no surgery, no chemo, no radiation, hormone treatment only, with a very aggressive cancer and being at Stage 4.

That makes me the bumblebee. It's impossible for me to fly, but I'm zipping from flower to flower anyway.

In my mind, there are two possible reasons for my impossibly low PSA. First, I haven't been on hormone treatment alone, as most of you know if you've been following along. I've also been on a cannabis oil suppository program. I began that on December 1st of 2016, and the full 90 day program lasted through February. I'm on a lower "maintenance" dose now, that I hope to stay on long term. Of all of the guys I've heard from, none of them have been able to add a program like that to their hormone treatment. And none of them have had a PSA anywhere near that low. I have to think that's a major factor.

Of course, I believe it could very well be a God thing too, but that raises this obvious question. If it's the result of prayer, why have the prayers of so many worked so well for me, but not for others who also have people praying for them? If it's God, does that mean God loves me more than he loves them? I don't believe that for one second. So while my faith in God is stronger than it's ever been before, I still struggle with the question, why does God heal some, but not others? See my post My Complicated History With Divine Healing for more on that subject.

I don't really believe I'm healed. It would take another bone scan, MRI, and biopsy to prove that. That great number may well be temporary. I'm pretty sure that's what my oncologist is expecting. But he hasn't had a patient go through a whole Rick Simpson Oil suppository program like I have. I'll bet he also hasn't had a patient with all of my factors with a PSA that low, either. I'll ask him that next time I see him.

I should update you on my weight gain program. After about a week, I've gained three pounds, according to our old scale, and just over four on our new scale. All I had to do to gain that extra pound was buy a new scale. The new scale can't be calibrated, and the old one had gotten flaky. But I'm keeping and using both until I reach 130 on the old scale. Then I'll know what that means on the new one.

My weight on both scales this morning

My next Xgeva shot is Thursday, April 6th. I expect to be up to my optimum weight by then. I'm looking forward to seeing my nutritionist Katie, and telling her how she helped me again.

One way or another, I believe God is the reason for my impossibly low PSA. Either he's shrinking my cancer by his own divine intervention, or a plant he created millennia ago is doing the job, in combination with conventional treatment. If it was the Lupron and Xtandi alone, a number this low for guys in my condition would be more common.

I do believe that God, in his providence, brought my wife and me here to Colorado back in 1978, maybe for this very reason. So we'd be living here in this state when I needed this medicine, among other reasons. God does all things well.

Before cancer, I was more like a wasp than a bumblebee. Prone to sting when I got mad at someone. Throwing out barbs like there was no tomorrow. But now, like the bumblebee, I understand the cost of those barbs, to me as well as the people I sometimes feel like stinging. So I'm more likely to extend grace, the way the bumblebee does. The cost of not doing so is too high.

I don't know why, like the bumblebee, I seem to be achieving the impossible right now. But I have a strong suspicion as to why that is. And I know that with God, nothing is impossible. #waroncancer

Jesus looked at them and said, “With man this is impossible, but with God all things are possible.” (Matthew 19:26)

Thursday, March 16, 2017

The Attack Of The Food Police

I gained a pound yesterday. This morning I weighed 126. I'll take it. I wish I'd taken a picture of the scale, but you'll just have to take my word for it. So far so good.

One issue with my eating habits that I forgot to mention in my last post is that, since I had cavities filled last October, my bite has not felt right. I went back to get it fixed once, but it's still uncomfortable to chew anything hard or chewy on my left side. I have an appointment for a cleaning next month, so I'm hoping they can fix the problem permanently then.

I am a huge bread lover. I normally have bread with every meal. And not the stuff that comes pre-sliced in a plastic bag, either. Only chewy artesian bread with a hard crust is good enough for me. Whole Foods has completely spoiled me for bread. Their organic French Boule is my go-to bread. Baked right there in the store. And the fact that we have one right behind our house makes it easy for me to keep this standard.

But lately, I haven't been eating bread a lot of times when I normally would, just because it's too hard to chew. That's been another factor in my desire to eat, and my weight loss, I think. Even things like the thin tortilla chips I like so much at Wahoos Fish Taco because they have little or no salt on them can be uncomfortable to chew, which makes going there less fun for me. I discussed my dental issue with my nutritionist, and she agreed that I need to get that problem resolved to be able to stay at my goal weight long term. Anything that decreases my desire to eat is a bad thing. But I don't want to go back to the dentist just for that. I just don't like going there. So that can wait until April.

But none of that is what I wanted to talk about today. I should have known the kind of reaction I might get from my last post. There were many "helpful suggestions." None of which were actually helpful. In fact, many of them came off to me as rather bossy.

In the comments of the Facebook share of my last post, people started telling me I shouldn't drink the Carnation Breakfast Essentials my nutritionist recommended because they have too much sugar in them, or they're too processed. Links were posted on my timeline about why I shouldn't drink the protein shakes that helped me gain my weight back a year ago. Not to mention the cheap ice cream I was adding to the protein shakes.

Frankly, I found many of these comments infuriating, as well-intentioned as they may have been. There was an entire thread of comments that I found it necessary to delete, because I felt I was being talked down to in the comments of my own post, on my own timeline. NEVER eat this. NEVER drink that. BAD for cancer. Bad, bad, BAD! This in spite of what my nutritionist, whom I trust, had just told me.

For a while, I debated one person in that comments thread that I eventually deleted. The point I made was simple. My PSA number right now speaks for itself. If those little bottles of enriched chocolate liquid were really that bad for my cancer, I said, my PSA number would not be the lowest it's ever been right now, .06. I've been drinking them for a year, and my number keeps going down. So to me, that argument holds no water at all.

Another part of the debate was over sugar. But the same answer applies. If the amount of sugar I'm consuming was really feeding my cancer as much as some say, my PSA would not be .06 for a Stage 4 prostate cancer patient who still has his prostate.

And by the way, I can't very well avoid sugar when I'm going into the ice cream business, can I? I can avoid cheap candy and soft drinks, and other sources of high fructose corn syrup, but ice cream is non-negotiable.

But before long, I grew tired of debating, and deleted the thread. I understand that most of these comments are meant to help, but I didn't find them helpful at all. Neither are the suggestions that I should just stuff myself all the time. Anyone who thinks I could actually do that hasn't been paying attention.

There were many supportive comments, however, and I'm grateful to all of you for your support. And there was one hilarious one from my friend Dan Cole. He said, and I quote:

I make a smoothie out of dandelions and baby goats milk yogurt that I harvest from my back yard. And then I throw in a mixture of kale, corn stalks and free range marmoset meat. Mix it all up. Mmmmmm. And then I dump it straight in the toilet and go get a nice craft beer with a cheeseburger.

I hate the food police.

If there's anything I can't stand, it's a cancer blogger who's funnier than I am. Just kidding. Dan's comment made my day. After I'd deleted the thread I found most offensive, plus another comment or two that were along the same lines, I added this comment. It's not nearly as funny as Dan's. In fact, you can probably sense my anger in it.

I have deleted some comments that I think are inappropriate. Like my friend Dan Cole, I hate the food police. I also really have a problem with people who think they know more than the medical professionals who treat me because they've read some articles on the internet. I appreciate your concern, but I won't be told what to eat or what not to eat by friends in Facebook comments. I'm sorry, but I'll listen to my doctor and my nutritionist before I'll listen to you.

Maybe that was harsh, but it's how I feel. Please understand that this program I'm on is temporary. This is not a lifestyle change. When I had this problem a year ago, once my weight had stabilized at my normal weight of around 130 pounds, I stopped drinking the protein shakes for lunch. I don't really want lunch if I've had a good breakfast. Once I'm back to 130, and I'm back on the four month version of the Lupron shot, I should be able to go back to eating the same way I did before. Which is very healthy, by the way.

One key principle in getting a cancer patient to eat who doesn't have much of an appetite is to find calorie-rich food and drink that the patient will actually consume. Foods that he or she likes, and that are appetizing to the patient. One would think this would be obvious. I'll go hungry before I'll drink a smoothie made calorie rich with avocado or peanut butter. Not to mention free range marmoset meat. But a chocolate milk shake, that I can be talked into. At noon, I'm not hungry for a sandwich if I've eaten a big breakfast at 9:00 AM. But I can drink something liquid that has lots of calories. The protein shake is the best solution for me.

I'm not eating to cure my cancer. I'm eating to try to gain weight. That seems to have gotten lost with some.

Like it or not, the Carnation Breakfast Essentials are here to stay. It's the perfect easy, convenient thing I can have first thing in the morning when I take my pills, or need something in my stomach, but don't feel like eating. When I don't have time to cook for myself or prepare a snack, but need some calories, the combination of a bottle of Carnation Breakfast Essentials and a Clif bar (chocolate brownie, of course) makes a good, quick and convenient calorie boost.

Cancer patients get bombarded by information about what we should and shouldn't eat, special diets that are supposed to be good for cancer, what supplements we should take, and on and on. It's exhausting, and I'm not convinced that any of it has any real impact on my cancer. What has an impact is the medication I'm on, conventional and alternative. What has an impact is exercise and maintaining a good BMI. That's what my team tells me, and it's also what the results tell me. As I said earlier, the results speak for themselves.

Yes, we should all eat healthy diets, and avoid fast food and processed food wherever possible. My wife and I are big proponents of that philosophy. But in a case like mine, finding high-calorie foods that are appetizing to me when I don't have much of an appetite, and don't require me to prepare something for myself when I don't have the time or am too tired is the only real standard that matters.

Please don't think that I don't appreciate your concern. Of course I do. But I expect my friends to respect my choices as much as I expect that of my medical team. More, really. I say this with all love and gratitude, but when I write a post like the last one or this one, I'm not asking for your advice. As with all of my posts, I'm just telling my own story.

I did some yard work today, and my stomach's growling a bit. It's early for dinner, so I think I'll have a Clif bar to tide me over. I just hope the Food Police don't show up with a warrant for my arrest. #waroncancer

Tuesday, March 14, 2017

The Road To Zero

I continue to struggle to keep my weight up. That last six month Lupron shot really did a number on me. The above picture was my actual weight this morning. Sorry you had to see my deformed toes.

I had the same problem a year ago, and probably for the same reason. Some prostate cancer patients gain weight from hormone treatment. I lose weight from it, and I can't afford to lose much weight. I'm already thin.

As I talked about in my post, The Six Month Lupron Shot Blues, the six month version of the shot I was given last time made my abdominal area numb for a couple of months, so I couldn't feel hunger until my stomach started growling. I've never been able to eat when I don't feel hungry. I've never been able to stuff myself, or overeat. That was a great advantage to me all my life until I got cancer. Now it's a problem.

I'm sure I told this story at some point a year ago in this blog, but it bears repeating. Once, years ago, our dear friend Deanna asked my wife (tongue in cheek, I'm sure - that's Deanna) if I eat. My wife said, yes, I eat, but I stop when I'm full. Deanna was incredulous! What a concept! I eat when I'm hungry, and I stop when I'm full! That's worked really well for me until about a year ago.

A year ago, my weight reached as low as 120 pounds.

And that's with socks on! That's when the alarm bells went off in my head, and I realized I needed to see a nutritionist, which I did. I'll call her Katie, (not her real name) and my visit with her a year ago is told in my post, My Manna From Heaven. If you are a thin guy on hormone treatment who struggles to keep his weight up like I do, I highly recommend reading that post.

If you were reading this blog at that time, you may remember that her program worked very well for me, and I gave her some of my gourmet dark chocolate ice cream to thank her.

After my weight started going down again a month or so ago, I thought the time might come when I'd need to see Katie again. After a week and a half of diarrhea from our trip to Mexico, that need became more apparent. So I made an appointment to see her yesterday.

My normal weight is 130 to 132 pounds. You might not think five to seven pounds is that much to lose or gain, but to me, it's huge. It's hard for me to gain that much weight. I have the opposite problem that most people have; it's always been easy for me to lose weight, and hard to gain it. I've always had a high metabolism.

Once, in the 1980's, I went on a four day fast for spiritual reasons. I was in my thirties at the time. I lost fourteen pounds in four days, and it took me six months to gain it all back. And that's when I was perfectly healthy. Now it's even harder.

I'm sorry I have to say this again, but please don't joke that you wish you had my problem. Trust me, you don't. I know you mean well, but it's not funny.

By now, my bowel movements have gone back to normal, but my weight issues persist, as you can see. So when I saw Katie yesterday, I couldn't blame my weight on a bug from south of the border, or Montezuma's Revenge. Just the same problems I've had ever since I got that six month Lupron shot. My appetite is not what it should be. I get hungry, but then I eat a few bites and don't want anymore.

Since I had consulted with Katie before, I pretty much knew what she would say, but there was additional information that I didn't learn last time.

I told her about my appetite problems, and she said it's a common issue for cancer patients in treatment. There isn't really a good solution for it. She said if my problems persist in that area, there's a mild anti-depressant that she can prescribe that also acts as an appetite stimulant. I'd really rather not go that route if I can avoid it.

But treatment isn't the only thing that's ruining my appetite these days. I'm also emotionally upset over a conflict between good friends. I wish I could fix it, but it doesn't seem like there's anything I can do. It tears me up inside, and that doesn't help my appetite either.

The obvious solution to both my appetite and my osteoporosis and muscle tone loss is exercise, of course. I know I need to exercise, but it's been hard to find the motivation to do so. But now I have to. At the very least, I need to walk more. We have a gym with a weight machine in our basement, so I need to start using it again. At least two or three times per week, according to Katie. I'll start doing that again tomorrow. And the weather is great here this week, in the seventies and even eighties this weekend, so there's no excuse not to walk the dog.

You may be thinking, "Wait a minute, Mark, aren't you a medical marijuana patient? Isn't that supposed to help with appetite?" Yes, it does. But what I'm taking and the way I'm taking it doesn't really help my appetite at all. It's true that pot smokers get the munchies, and that cancer patients on chemo get help with their appetites by smoking or vaping medical marijuana. But the oil I'm taking is so concentrated that, even though I don't get very high from it, it ruins my tolerance for taking cannabis any other way. Smoking a doobie is not gonna help my appetite. I've tried.

But Katie suggested that CBD, which is the non-psychoactive component of the cannabis plant, and also the part that has most of the medical benefits, could also help with my appetite. I have access to CBD from a hemp plant provided by my caregiver that I grind up and use to make tea. I've only done that occasionally, and never felt anything from it. But maybe it will help if I start brewing that for myself every day.

Katie also wants me to start having protein shake lunches every day again. So I got some cheap ice cream, and ordered more of the MRM Natural Gainer I used before. My gourmet ice cream is way too good for protein shakes. Too expensive, too! In addition, she wants me to start eating before I go to bed. This is much harder than having a shake for lunch.

I understand the principle of eating before bed. I'm about to fast for eight hours or more while I sleep. I actually sleep for something more like ten to eleven hours each night these days. So I need to give my body something to digest during the night. But we usually eat dinner around 5:00 PM, and go to bed by 8:00 or 8:30 PM. Last night, we ate dinner around 5:30, having had chips and salsa for an appetizer, and my wife made pasta especially to help me gain weight.

But I ended up going to bed around 7:30 PM last night because I was so tired from the day. I was still full from dinner, so I didn't eat anything right before bed. I didn't get up until after 7:00 AM this morning. Almost twelve hours without eating. So I lost a pound instead of gaining. I need to be more intentional about eating before bed, even if I still feel full. But that's very hard for me to do.

I've done this before, so I know how to do it again. I just need to get on with it so I don't lose any more ground. If I don't, Gaunt Cancer Guy is right around the corner.

I asked Katie about diets for cancer that I've heard about from well meaning friends, in particular, the Ketogenic diet and plant-based diets. I wanted to know her professional opinion of those as a nutritionist. She said that the most important thing in fighting cancer is keeping a good BMI, or body mass index. Plant-based diets won't do that for me. One of the benefits of those diets is weight loss. That's a benefit I don't need. It's more important for me to keep my weight up than it is to try to sift out all of the "bad" foods for cancer, and only stick to the "good" ones. So excuse me if I keep having bacon for breakfast. It's what I need to do right now, and probably for good.

After my consultation with Katie, I told her about this blog, and that I had been talking about her in it. I told her I'd be writing about her today, and that I consider her to be a valuable member of My Team. I got emotional, right there in the office during a consultation. Shocking, I know. But this lady saved me from some real trouble a year ago by teaching me how to eat properly. I'm so grateful that I still have her to consult with a year later, now that the same problem has recurred.

As I've said before, I'm going back to the four month version of the Lupron shot from now on, to try to avoid this problem in the future. But this probably won't be the last time I have to deal with this. I just don't have that much margin for error. Gaunt Cancer Guy is still in the future, but I can see him coming. #waroncancer

Friday, March 10, 2017

More Good News

I have more good news to report. I wasn't expecting to get my PSA result so soon, but it came in this morning. My PSA, which was already low, at .16, is now even lower. It's .06. It's not quite what they would call undetectable, though I was really hoping that would be the title of this post. And I don't think I can say I'm in remission, as the definition of that seems to be that you can go off treatment, at least somewhat. I doubt that will ever be true for me. But it's great news, just the same.

It means that the trend is still down, which means my cancer is still shrinking. As I said in my post, Melanie And Me, my oncologist says that, at this point, it's more about the trend than the actual numbers. The trend is still in the right direction.

It's odd the way this test was carried out. For some reason, my next Lupron shot and PSA was scheduled for next month, which is too early for Lupron. It's been two months since my last test, and my oncologist thought a two month interval was a good time to test. Normally, the blood draw happens a few days before, so I have a chance to talk with him about what it means. But this time, it didn't happen that way.

So when I got my result from the My Centura Health account I've set up with them, I had trouble reaching my oncologist to ask about it. As much as I've bragged on My Team, my one real complaint is that the doctor is hard to reach. Even his assistant takes a while to return a message. I left a voice mail this morning to ask specifically if my new number was considered "undetectable" or if it meant I was in remission, but when someone called back, I was in a meeting, and couldn't take the call.

All the assistant said in her voice mail was that my PSA was "slightly lower" at .06, and all of my other numbers are normal. So while I may not be in remission, since I have to stay on treatment, a number that low for a Stage 4 cancer patient with bone mets and who still has his prostate is an amazing number.

As I've said before, my PSA will never be zero, because of the fact that I still have my prostate. I thought .16 was as far down as it could go, but I was wrong. I've never been so glad to be wrong about anything.

Since I couldn't reach my doctor or his assistant - she doesn't work on Fridays, nor does my favorite nurse Melanie - I asked in a support group what number was considered undetectable, and got varying answers. Google was no help either. Every result assumed a low number after surgery. I couldn't find an article that showed what number would be considered undetectable, or "no evidence of disease" in a Stage 4 patient who still had their prostate. But it's hard for me to imagine that my number go any lower than this, barring a miracle.

The tone of the assistant who left a voice mail on my phone was not celebratory. It was very matter-of-fact, and it doesn't seem that my doctor is overly excited about it either. I'm sure if I saw him, or if we'd had this result yesterday, he would have said I'm doing really well and let's keep going, but probably not much more than that. So I probably shouldn't use the R word or the U word. I'll just take this number at face value. I'll take it for the rest of my life! But I probably won't get that option.

I know Xtandi gets a lot of the credit, but I think the cannabis oil program I've been on gets some of the credit too. I'm now on a lower "maintenance" dose that I hope to stay on long term. It's just a matter of paying for it. Insurance doesn't cover that.

And of course, the prayers of so many get credit for this too. Ultimately, God gets the credit for all of it. It's been a while since I've thanked you all for your prayers, so I have to do so now. Thank you for your prayers. I feel them. They sustain me. Please keep it up.

The last time I had a really good report like this, some people had the impression that I was cured. That I was cancer-free. I'm not. I never will be, unless cannabis oil does everything they say it does, or unless God miraculously heals me. Maybe that's what he's doing right now. If so, all the glory belongs to him. If not, I'll keep being a witness to his goodness to me during this time for as long as I can. #waroncancer

Thursday, March 9, 2017

A Perfect Storm

My visit with my oncologist went as well as could be expected today. His answers to my questions allayed most of my fears. And I got to see my favorite nurse and my nutritionist! But I'll start from the beginning. It's a very good place to start, or so I've heard. Sorry for that ear worm. Actually, I'm not. I think Do Re Mi from The Sound Of Music is a brilliant piece of songwriting. But I digress.

I arrived at Cypress Hematology and Oncology here in Denver this morning. As usual, I took the stairs rather than the elevator. I'm glad I did, because I happened to run into Katie, my nutritionist. I haven't seen her since I gave her some of my ice cream to thank her for helping me get my weight back on track several months ago. I told her I was struggling with my weight again, and have some digestive issues that I think are a consequence of our trip to Mexico. She gave me her card again, but I didn't need it. I made an appointment with her for Monday on my way out.

As I checked in at the front desk, the new girl at reception finally knew me. The last time I was in the office, I had teased her about how famous I am there. So when she simply handed me my badge when I walked in, I said, "See, you know who I am now!" She laughed and agreed. Have I mentioned that I love my team?

I didn't get my usual MA this time, Nikki, but another that I'd seen a few times before, a lady named Leara (pronounced Lair-a). She came in to get my vitals before I saw the doctor. I told her briefly about my "episode" and how one of you had suggested that it may have been a drop in blood pressure that caused it. I asked her to take my blood pressure from a lying down position to a standing position, which she did. My blood pressure lying down was 125/78, and when I stood up, it was 107/78. Pretty strong. So it doesn't appear to have been that, or at least not that alone.

I was very glad I had made this appointment to talk about the onset of osteoporosis with my oncologist. It came at the perfect time after my episode. But when the doctor came in, we talked about the osteoporosis first, since that was the reason for the appointment. I asked him how at risk I am for falling and lifting. He said he's not an expert on osteoporosis, but he thinks I'm okay for normal activity. He wants me to exercise, but not try to lift too much. I can do that. But I need to be careful not to fall. Falling is dangerous, especially for me. So I did the right thing by sitting down immediately when the spell came over me. I guess I should have crawled to the bathroom instead of trying to walk. Then I wouldn't have fallen the way I did. Live and learn.

He also thinks we're being aggressive enough with treatment for it that I can expect my bones to get stronger, not weaker. That's what the monthly Xgeva shots are for.

I have other contributing factors that may be at play in my osteoporosis, like the fact that both my mom and sister have it,  and the mere fact that I'm "a skinny white guy," to use his terminology. Hmmm, Skinny White Boy sounds like a good parody of a certain Foreigner song I know. But who would play it?

Then I told him all about my Scary Episode. I gave him details that I haven't given you yet. The crucial detail I left out of my last post is that my wife and I have both had diarrhea, or soft stools ever since we got back from Mexico. When I described to him what happened last Saturday night, he thought the most likely explanation was a "perfect storm" (his words) of dehydration from diarrhea, maybe some bug I'd picked up south of the border, and perhaps a slight drop in blood pressure.

So my friend Trevor's suggestion that it was some kind of Mexican virus was the closest to the truth. He also had the best advice - stay off Google! Which I did.

It doesn't appear to have been low blood sugar, and it definitely was not a cardiac event, or a heart attack. I feel fine today, and I wouldn't if it had been a cardiac event of some kind. But he did tell me that if it happens again, I should get to the ER fast. Not an Urgent Care unit closer to home, but Porter Hospital, where their offices are located, because all of my records are there. That's good to know in any emergency I may have, not just a recurrence of that dizzy spell. Porter is about 15 minutes away. It's good to live in a big city at times like that.

While I was there, he decided to get my blood drawn for a PSA test, since it's been two months since my last one. I'll post again when I have that number, probably by Monday.

Then my favorite nurse, the famous Melanie came in. She was wearing the cross pendant I gave her. She gave me my Xgeva shot, and made sure my next two appointments for shots were on days that she's working. She called me Honey several times. I love this lady so much. No, you can't have Melanie. She's mine. Unless you go to the same place for cancer care that I go to. If you do, insist on her!

On my way out, as I mentioned earlier, I stopped by my nutritionist's office to make an appointment with her for this Monday. I want to talk to her about my recurring weight issues, and the continuing soft stools that can only be making that worse. I hope she'll be able to recommend something to get this whatever-it-is out of my system.

In Mexico, we didn't stay in an Americanized all-inclusive resort. We stayed in a house, and ate out at local restaurants for almost every meal. So who knows what I may have picked up from a Mexican kitchen, or maybe ice cubes (Do they use purified water?) or the wonderful seafood, which I ate almost every day.

Not that I'm complaining! If you've read my post about our trip, you know what a blessing it was. We just seem to have come back with a touch of Montezuma's Revenge. We're not the first to have that happen.

Some dire choices I might have to make were running through my head before this appointment. Lupron can cause heart problems, though it's rare. It makes sense, since it ruins muscle tone, and the heart is a muscle. If it was cardiac event, would that mean I'd have to choose between staying on Lupron and risking a heart attack, or going off of it and just letting cancer take over? That was just one of the jolly scenarios I was considering. But thankfully, that's not a choice I'll have to make. At least, not yet.

I was overwhelmed and a little amused by the reaction to A Scary Episode. It's now my #2 all-time most viewed post, and was probably only kept from the top spot by the fact that I shared a year old post yesterday, Priorities, which got a lot of attention. I'm incredibly grateful that so many care when I have major news to report. But I couldn't help but be amused that I'd just written what I considered to be this beautiful post about hearing the voice of God in The Sound Of The Surf, and that post barely hit my usual low number of views. But write one about falling into the bathtub, and everybody wants to read it!

It's good to have good news right after some bad news. The good news is, I appear to be fine. Other than cancer and osteoporosis, that is. I got to see my team, and I got to give you some good news. Let's all hope and pray that the news is still good when I get my PSA number. #waroncancer

Sunday, March 5, 2017

A Scary Episode

I'm exhausted and very shaky today. Not only, or even mainly because I had a five hour rehearsal with the kids yesterday and a show this afternoon. It's because of something that happened during the night last night. I had some kind of "spell" or "episode," and I feel like it's weakened me significantly.

I went to bed around 9:00 PM, which is late for me these days. I went right to sleep, as usual, thanks to the Tiny Popsicles. I need to update you on that program, by the way, but that's for another post. I was awakened at about 12:30 AM by our dog Sookie barking to be let outside. We don't have a dog door, and it's my job to let the dog out during the night.

Sookie has attitude

So I got up and went down two flights of stairs to our back door to open it for her. I needed to "do some business" myself, but I always wait for her, because she'll invariably bark to be let back in while I'm in mid-steam, if you know what I mean. While I waited, I was overcome by a wave of dizziness, nausea, and sweat pouring out of every pore of my body. I felt like I was about to faint or vomit, but I did neither. I couldn't keep standing up, so I sat down near the door to wait.

After letting her back in, I tried to make my way to the bathroom by holding on to whatever I could find along the way. I made it there, but once I stepped into the bathroom, I lost my equilibrium and fell into the bathtub.

My wife happened to be up at the time, and came to see what had happened. There I was, lying in a heap in a bathtub, unable to get up. And I still needed go. Really bad. This would not do. I was not about to pee my pants in a bathtub.

I assured her that I could get out on my own, and she went back to bed. I did manage to do that, and get my business done. Now all I needed to do was go back up two flights of stairs to the bedroom. I didn't even make it out of the bathroom on my first try, I was so dizzy. I had to lean on the bathroom counter for a few minutes and collect myself first.

I finally managed, by hanging on to both bannisters all the way up and gripping walls and whatever else was handy, to get to the bed. But my pajamas were completely soaked with sweat. I couldn't just climb back into bed. I had to change. So I sat on the edge of the bed for a few minutes until I felt like I could stand long enough to change out of my wet clothes into some dry ones.

Once I had changed and gotten back into bed, thankfully, I went right back to sleep. But when I got up this morning, I was very shaky on my feet. I felt very weak, and still do.

A fall like that is scary for anyone, but for me, having been newly diagnosed with osteoporosis, which was caused by Lupron, it was a nightmare scenario. It's exactly the kind of thing I need to avoid. I got by with just a scrape on my forehead and a deep bruise in my right thigh that's made it difficult to stand, sit and squat today. Perfect for a day when you have a gig and are expected to carry musical equipment.

I have no idea what might have caused that episode. Maybe I ate something that didn't agree with me. Maybe my system is still flushing out stuff I ate in Mexico. Maybe it's related to my treatment in some way. I don't know. But it can't happen again. Falling is not allowed.

I have an appointment with my oncologist on Thursday to talk about my osteoporosis, and how careful I need to be. How much weight can I lift? How dangerous is falling for me right now? I know I'm supposed to be exercising, but I feel like I need to talk to him first before I start.

I've talked before about how Lupron is making me weaker every day. But until now, it's been a gradual process. But I feel like last night's episode took me down a few notches. Like I've lost ground that I'll never make up.

Did that keep me away from the kids' show today? Of course not! The show must go on, and there was no way I was gonna let them down. Besides, we've been working towards this performance for months. I wanted to be there with all of my heart. So I went, and as expected, the joy of being with them and performing got the ol' adrenaline juices going, and I got through it fine. The kids were amazing. I'm so proud and happy to be part of The Littleton Conservatory Of Rock.

I didn't tell my friend Todd, who runs the Conservatory, about how shaky I felt or why. I didn't want to put that on him. But I did tell his wife Sandi, who I've mentioned many times before in this blog. I at least wanted someone there to know what was going on in case I collapsed onstage or something.

I can't help but wonder if I really have lost some basic physical strength because of this that I'll never get back. I continue to lose weight. I get hungry, but eat a few bites and don't feel like eating anymore. That's making me weaker too.

If something like that happens again, it could be disastrous. What if, next time, I fall down the stairs? Or hit my head on something sharp?

My dad got one of those walker carts with wheels recently. I saw someone using one in a store the other day, and wondered how long before I'll need one. How long before cancer, or Lupron, or both compromise the strength of my bones to the point where I can't do much at all?

Tomorrow should be a recovery day, but I need to work in the morning and we're hosting a friend for dinner. I refuse to cancel that. It's been too long since we've gotten together with her. Tuesday will have to suffice. I just hope that I don't have another scary episode like that between now and then, or ever. #waroncancer

Thursday, March 2, 2017

The Sound Of The Surf

Playa Los Muertos in Sayulita, Mexico

It was an amazing week in Sayulita, Mexico with our dear friends Paul and Denise. It was our first trip to a tropical location like this in twelve years. Everything about it was wonderful, but I had forgotten how much one simple aspect of it would affect me; the sound of the surf.

We spent our last full day there on the beach. Most of this post was written there, with the above view in front of me and the sound of the surf in my ears. I thought I might be inspired to write from there, and I was. The surf was gentle and fairly calm that day, and the sound of the waves coming ashore soothed my soul in a way that's hard to describe.

One Lupron note. You know you're on Lupron when you're at the beach and you're more interested in the bikini-clad girl's dog than in the girl herself.

Despite the fact that I live in the inland mountain state of Colorado, I've always been drawn to the beach. I've always wanted to live on the beach, or at least in a beach town. Something about beach culture appeals to me. I think it's my inner hippie coming out.

The house where we stayed was not very close to the beach, but it had a breathtaking view of the bay below us. The sound of the surf is always there. Until the outdoor live music in town started at 9:00 PM, which it did Every. Single. Night. Some kind of local festival was going on, which made things interesting. But the music didn't keep me awake once, because the sound of the surf so deeply relaxed me throughout the day.

The view of Bahia de Banderas from our balcony.

A couple of notes on the house where we stayed before I continue. We were frequently visited by a very friendly Cocker Spaniel, who belongs to the owner of the property. Her name is Lady. She helped me not to miss my Sookie so much.

The Lady of the house

And in our room, there was a statue of the Buddha. I decided that was a good place to hang the cross pendants I brought with me.

I cover you with crosses, Buddha.

To be honest, I wasn't sure how well I'd get through this trip, so soon after my last trip to visit my family. I thought I might have problems with my energy level, but I only needed one recovery day while we were there. That was Monday, after a strenuous three hour boat ride on choppy seas, holding on for dear life. But it was nothing sleeping in and taking a nap couldn't cure.

I also stressed about the mere fact of being away from home for a week. I can't explain it. It must be a security thing, but I find myself wanting to stay home these days. Overall, I feel like I'm in a weakened state. I feel very vulnerable outside my comfort zone. I don't feel like I'm physically capable of things I used to do easily. So I have difficulty venturing outside what I feel is my "safe zone."

One quick example from the trip. On the boat ride excursion we took, there was one place the boat stopped to allow passengers to swim to shore through a tunnel to a picturesque beach area. The trouble was, you had to jump into cold ocean water over your head to swim there, maybe a quarter of a mile. Two years ago, this would have been no problem for me. This time, there was no way. If I'd tried that, I don't think I'd have had the strength to hold on for the ride back. Stuff like that reminded me of my reality while I was in paradise.

Even in paradise, I still had to take my medicine. I can't think of a better way to take it than sitting on this balcony, looking out at the ocean, listening to the sound of the surf.

There's something about the sound of the ocean, the sound of waves hitting the shore that relaxes me like nothing else does. Rough waters or calm, the ocean speaks to me. With the sound of each wave that washes ashore, I can exhale more deeply than I can anywhere else. The longer I'm near the ocean, the more the stress that's been coiling up inside me since I found out I have cancer loosens. This was exactly what the doctor ordered. This. I had no idea how much I needed this.

For me, being near the ocean is being nearer to God. The ocean speaks to me of God's faithfulness, his power, and his unchanging nature. When the waves are high like they were on Saturday, or choppy like they were when they were tossing our tiny boat on Sunday, the waves say, "Who are you to question the ways of the One who set the boundaries of the sea, and spoke the laws which govern it?" The ocean reminds us how small we are, and how big God is.

The crashing waves remind me how futile it is to ask Why Me. It's like asking why a particular wave hit the rocks the way it did. The power of the waves reminds me to trust an all-powerful God.

When the waves are calm, like they were our last day on the beach, when I wrote most of this post, they're like a gentle, caressing hand, massaging my soul. They say, "Relax, Mark, God's got this."

On the balcony of the house where we stayed, the sound of the surf is far away, but always there. It says, "God may seem far away, but he's always with us."

Sunday morning fog over the bay

I brought my iPod and a Bluetooth speaker on this trip, like I always do when we travel. For the first few days, I used it. But after a while, I didn't want to anymore. I'd rather listen to the sound of the surf. I can listen to music anytime.

This trip was an unexpected gift. Due to the state of our finances, we never expected to go on a trip like this again. My wife and I celebrate our 40th wedding anniversary this July, and when Paul and Denise invited us to join them in Sayulita, we decided to count it as our anniversary trip. We are so grateful to them for making this happen for us, and having them with us the whole time made it even better.

Because in the end, that's what really shows the love of God, more than the waves. It's the love of friends like these, in times like these.

Thankfully, Paul and Denise traveled back to Denver with us. We'll be able to continue to see them. The sound of the surf followed me home too, but only in my soul. I hope to hear it again one day, but if not, I'm eternally grateful for this chance to hear the voice of God in the sound of the surf for a few days. #waroncancer