Following the Rules

The last few days I've continued with my daily blood tests. I've actually been regaining energy and the ability to stay up and interact with people. I am very encouraged by this in part because I miss work and look forward to contributing there, albeit not doing my regular duties. My blood counts have however been diminishing as the week has gone by. Dr. Lee's comment on that was - "So you decided to follow the rules," meaning that this drop in white blood cell count and neutrophils, a specific type of white blood cells, is anticipated. As of Friday I was officially suffering from nuetropenia.

This isn't a big deal - means that I am at an additional increased risk over the next few days of getting sick due to a super low immunity system. Dr. Lee is more concerned with the germs that we all have inside ourselves making me sick and that is why I'm taking a slew of drugs that are anti-bacterial, anti-fungal and anti-viral. Dr. Lee's advice being to spread the word and make sure that all those around me wash hands super-frequently so that doorknobs, dishes, et cetera that we all share are not contaminated with germs. Dr. Lee additionally confirmed that I'm recovering from bronchitis.

Beyond the blood work and meeting with Dr. Lee I got another dose of chemo and steroids at today's appointment. The chemo was Vincristine which I also had a dose of in my first hospital stay. The side-effects of this one are manageable for me so I don't anticipate significant problems. The steroids are supposed to probably have me a little wound up over the next couple of days and then subside.

Importantly, the results of the bone marrow biopsy and aspiration are somewhat inconclusive even after some very extensive tests, including and beyond a FISH test. However, the specialist that did those tests is sure there is mantel cell lymphoma involvement in the bone marrow, so I am officially now a Stage 4. I will therefore be meeting in the weeks ahead with a stem cell transplant specialist to discuss the advantages of doing a stem cell (bone marrow) transplant. Discussion will be around the benefits of doing it and when it might be best to do it, among other things. At this point, the transplant route is just under consideration - it will be a choice to be made once we have information and various opinions. The change to Stage 4 from Stage 3 does not change anything significantly in my case - same chemotherapy plan is used, same belief in the ultimate possible outcome is maintained by me and my oncologist.

Everyone has a different take on the necessity or benefits of the transplant in addition to the chemotherapy. Problem right now seems to be in the fact that there is not validated, conclusive evidence one way or the other that a transplant is significantly or additionally beneficial. Nor is there agreement on whether that option is best implemented when the cancer is put into remission the first time or on a relapse, if one occurs. Unfortunately, much of the progress and treatments currently used in the fight against MCL are "new" and don't have a long enough track record to say - "this is the way!" Fortunately, however, the progress that has been made in very recent years is amazing and promising. I meant to and will be adding to the blog an information resource that pulls together my understanding of the current state of affairs with MCL.

I apologize for not doing that yet - been a little busy. I'm obviously heavily vested and interested in knowing the current, particularly validated, information. That said, what I intend to put together and maintain will be something current and accurate as I see it. I think even that information will be slightly less optimistic than the "right now" reality because I am going to ignore what is not available to every single person with MCL - i.e. although I may mention trials and new drugs, those aren't a reality until they have enough validity and results to be in the mainstream of MCL treatment options. Even so, I'm sorry I haven't done it sooner because I know that those that have done your own searches have likely found a huge spectrum in particular with regard to what a MCL diagnosis means, summed up frequently in the words "median survival."

I'm sorry also because I'm aware of many who locked on to things like "2 to 3 year survival" and many others who locked on to other information that this can currently be "cured." Neither of those statements is true as of this posting - the "median survival" of MCL is currently thought to be 6 years - I'll go into that in my information section because "median survival" is probably not what many think it is, thankfully. Median survival is particularly, in my case as things stand today, not something to get too wrapped up in with regard to me.

With regard to cure - they are working hard on it. It is a cancer that is so rare, so historically bad, and so specific that it has captured the attention of some great funding sources that are allowing incredible people to work on this unique cancer. That is the source of the amazing things that are happening in MCL research and statements that this cancer is curable. Obviously, I have a selfish reason for believing that it can be cured right now; but I think it would be wrong for me to lead anyone who knows me to believe there is a cure today - isn't so, not for everyone with MCL. Cure in the scientific world is a difficult term anyways - if a treatment is found to put some high percentage of people into what is called complete remission for over 5 years, some call that a cure. And that is understandable, where do you as a scientist draw that line? Is it a cure only if all those who did that treatment live long enough to die of some other cause - old age, accident, whatever?

Fortunately, my oncologist means I'm CURED because he and I will know each other when we are senior citizens. So, it will take some time to complete it but I will post and update that information section as I put it together until it is complete. Then I will maintain it so that it is current. As is common with many cancer survivors - I will be involved in a, or form my own, means to support the efforts toward the cure of cancer. I already know that part of that support that I hope to contribute is to "clean up" the information that is out there and minimize the unfortunate experience had by those diagnosed now with MCL, and their families and friends, of looking up "mantle cell lymphoma" and having even three-year-old information come up. This is not unlike believing that there is some similarity between a cutting edge computer made in 2004 and one made in 2008 - MCL research is fast-paced, being current is truly important.

I'll say that this disease seems to have a large degree of variance from individual to individual. In this blog I'm speaking to and updating my personal circle of friends and family first and, as such, this blog is tailored to my experience and feelings about "our" future - i.e. that of myself and those that are connected to me. So, for me with MCL, things are optimistic. This is for a number of reasons, not limited to but including:

• I'm younger than those 'typically' diagnosed with MCL (Men over 60 is more common)
• My involvement is 'low volume' even though it is a Stage 4
• I am doing the more aggressive chemotherapy, partly due to my good health and age
• My organs show no involvement, it is limited to nodes in pelvis and throat (and bone marrow)
• I have, starting with God and ending with maybe Cashew, the sometimes resident Golden Retriever at Dr. Lee's office, an INCREDIBLE support group

That is not without regard to and sadness over those that have been, as an example, younger than me that have not survived the disease and, for that matter, didn't have long from diagnosis to death. There is a reason that my calling in life, the work that I cannot imagine not doing, is as a law enforcement officer. Part of that reason, in my opinion of the profession, is that I am a realist and, in a fashion, a pessimist.

I could not, for example, approach this without leaning toward the pragmatist's consideration of things as they are or appear to be, avoiding ideals and abstractions. As you can see in this blog - I'm a facts magnet. Same as in my profession - a piece of evidence, a statement, or something missing that had to have been at a place leads from one thing to another, from a crime or symptom back to the cause and then forward to the solution or cure.

Similarly, my life experience and now my profession created a pessimistic component in me that I use to grow and nurture my optimistic personality. Professionally, it is absolutely necessary to always expect the worse to happen - all the time. It is what keeps us alive - every person, every car, every situation from where and how a law enforcement officer sits at a restaurant to how they drive down the road is constantly evaluated internally with the expectation that the absolute worst, most remote thing will happen.

Personally, my life has been filled with its own unique blend of challenges and my mechanism developed when I was very young to expect and anticipate the worst outcome and learn how I was going to accept and adapt to and overcome that. Luckily, I've been very fortunate and frequently my belief that I was going to suffer untold pain or hardship or whatever negative end was left as only the outcome I imagined.

So that is how I've lived life positively - because usually what I imagined is so much worse than what happens that the actual thing is not a big deal. Not that I would wish bone marrow biopsy and aspiration on anyone, or intensive chemotherapy or anything. I've just been "blessed" with having experienced significant sorts of pain growing up so my pain continuum is broad enough to usually say that my current discomfort is less than something I've had. My rare, because I'm a closed up type, intimate talks recently reinforced my belief that God prepared me for this current battle by allowing me to be lucky enough to literally flirt with unintentionally killing myself numerous times as I've tried to grow up.

I have to publicly apologize to some of the people, in particular my Mom, for the things I put them through. Although embarrassing, Mom may post to this blog on this posting and share with you the things I put her through. It'd probably be good therapy for my dear Mom.

Those of you that know me think I'm not normal now, you have no idea until you hear of blizzards and frozen creeks, interacting with baby moose, adventures with knives, sledding over cliffs, shooting rifles, and stitches and broken bones. And that stuff only brings us up to my being about eight years old. I still don't think I can say the things that I did to myself, "fixed" myself, or the close calls in which I surely should have killed myself that Mom doesn't know about. In almost all cases because, as I mentioned before, I have failed historically to ever get excited about doctors or hospitals.

When I was younger that was because they had shots and I absolutely hated and feared shots - I never really felt one but I thought they were the absolute worst thing that could happen or be allowed to happen to a child. Mom may have something to say about that too - I wonder if she got billed for the extra personnel that came in to restrain her little boy in the aftermath of his collision with the boulder? I bet they gave her a break when that same turd, years later, literally ran way on the opposite side of our city as the car stopped rolling at the oral surgeon's office to have my pre-molars removed. God help me - my daughter is all that and worse! Of course, my phone is about to start ringing as soon as Mom reads this.

My main point being though is that God truly prepared me to fight this fight. Those things did not make me anything better than anyone else - they just allow me to believe that I can do this and they allow me to overcome my anxiety a little more. Without those things, however, I would have been a different person and logic says I'd be coping differently. With those things, I also have had an incredibly rich life with some funny (now) stories that remind me of those of Edward Bloom in Tim Burton's film "Big Fish" - they are simply hard to believe, even for me. I am so thankful for those experiences now.

I do have a question for those of you reading this blog - which is already self-serving in nature because it is probably most helpful to me. That question appears as a survey question on the blog so please answer it there if you wish so that I can make a decision. Basically it comes to this, like most any person who is challenged with this kind of burden - this is an unexpected and significant expense. There are several people that are doing work to organize fund-raising events to support me. First I have to say, again, I am so thankful and know a whole new humble because of the support. But the question to help me make a decision is this - is it appropriate to share here on this blog information on those efforts? I will truly base my decision on the winning percentage of that survey I'm posting on the blog because of one thing - that act goes against my nature and I struggle with whether that is selfish thinking because the "financial" part of this has and will translate directly to a burden on my family that I might possibly help alleviate by sharing about events that are put together.