So in keeping with the complete randomness of this blog (roly slides to cancer updates), I’m going to switch gears completely. Well, a little bit anyway.
A few years ago, Angela and I were in Wal-Mart and ran into somebody we knew in high school. As we were talking, she remarked “Wow, you guys are a bunch of health nuts.” I thought it was a weird statement at the time, but as I thought about it, I realized we were (and are) “health nuts”. I think about the amount of time I’ve spent in the gym over the years, the Crossfit, the P90X, kettlebells, running, I could go on, but you get the picture. Lately I have been thinking about all of this, mainly because I can’t really do what I love, which is run (and do insane workouts), and how it got started.
When we left Italy in 2000 and I checked into my first Seabee battalion in Spain, I was overweight. I’d always been somewhat of a chubby kid (at least I thought so), but after high school and for the first few years I was in the Navy, I had been fairly lean. I thought I was in decent shape, but I showed up for my first weigh – in at 200+ pounds. Way out of standards. Good thing for me it was a “courtesy” weigh – in and it didn’t go in my record as a failure. I was able to get back in standards before it did count, but after coming home I quickly fell back into bad habits and found myself in the same spot. I resolved then that I would use the next deployment (to Guam in 2001) to get myself in shape. I recruited a workout buddy and we lived in the gym. It worked and I was hooked. I was 26 at the time, and I have to say the “health nut” lifestyle changes I made then probably saved my life last year. If I had not been in pretty good shape when I got septic and went into heart failure….well, let’s just say it wouldn’t have been pretty.
Over the past 12 years or so, I’ve been into everything. I’ve come to the conclusion that it doesn’t really matter what you do, as long as you do something. That and have the right attitude. In my job now as a primary care nurse, I see patients all the time who think they are sick, and guess what? They are. If you believe you are sick, you will be. And I think by the reverse, if you believe you are healthy, you will be. I never considered dying or letting cancer win. I don’t know how much that really did for me, but I do think if I hadn’t been so positive you would be reading a memorial right now. So mindset is vitally important in my book.
I’ve made a lot of changes over the past 2 years, some out of necessity, some out of choice. I can’t go run 6 miles every morning or do the Crossfit WOD, and that sucks. I dream about running…maybe one day. Anyway, I have switched my workout routine to TRX. For those of you that don’t know, it’s also called suspension training. You have these strap things that you use and you can vary the resistance based on how you angle your body. It’s great for rehab/recovery work or for someone who is just starting exercising. My goal is to get my legs strong enough again that I can walk/bike/golf the way I used to. So far, so good.
The other big change I’ve made is using meditation every (other) day. I read a study while I was in the hospital that said patients with brain cancer who meditate have like a 60% chance of not only beating the disease but also living longer, healthier lives. Being a patient with brain cancer (at the time), I was very interested in those results. As a nurse, I’m very familiar with what we call adjunct therapies. Things like meditation, acupuncture, massage, etc. I’m also familiar with the fact that most people think it’s garbage. A lot of the people I see just want a pill to cover up whatever symptom they are having rather than deal with the underlying issue. Adjunct therapies won’t help in that regard. They are more long term fixes than band-aids. Another reason I have become a big fan of meditation is for pain management. I have peripheral neuropathy as a result of all of the chemo I had. Basically my legs are numb from the knee down. Strangely, I can still feel pain though. Lots of pain. And cold. My feet will feel so cold it is as though they are frozen in a block off ice. When I touch them though, they are as warm as the rest of my body. Mind and nerves playing tricks on me. I do take a combo of drugs that help, but drugs can’t do everything. Enter meditation. If your mind is the problem, well fix it right? I’ve noticed a huge difference. And I’m no Buddhist monk mind you, but I it works. Even with my novice effort.
Anyway, I suppose that’s enough rambling. My main point is take care of yourself, whether that means being a “health nut” or just a regular person. Your health is really the only thing keeping you alive, so be nice to it.
Time to resurrect the blog again. It’s been a little while I guess. A lot has been going on since last September. Can’t believe it’s been that long since I’ve put in an update. I don’t think I could even detail all that has happened, so I’ll just boil it down to the basics. Cancer came back in my brain and spine, lots of chemo, tried really hard to die around Christmas (or so everyone tells me, I don’t really remember), had a bone marrow transplant, and now I’m all clear. Again. I wish it was that simple, but you get the idea.
One of the side effects of the transplant was serious nerve damage to my spine. It has left me with a limp and 2 numb feet which makes it very difficult to get around. Not to mention the 3+ months I spent in the hospital which seriously diminished my cardiovascular fitness level. I went from running marathons last summer to barely being able to get to the bathroom in February. That was difficult for me as being in shape has been a big part of my life for years. For those of you not familiar, this is how a bone marrow transplant works. First, they wipe out your immune system. Next, you get a round of immune “boosters” which cause you to produce stem cells. Those cells are harvested through a large bore catheter inserted in your chest. Takes about 3 days. Then, once you’ve recovered from that (or had sepsis, heart failure, and every other bad thing imaginable), they give you the nuclear blast of chemo. I’m talking almost as much chemo in one dose as I had had in the 11 previous rounds combined. Last, you are given back those stem cells which can then develop into a new immune system for you. It does come back, but it’s slow. You spend a lot of time in the hospital or on the couch being protected from the outside world. It’s boring. And I didn’t do jack the whole time.
Another “side effect” is losing my career in the Navy. I’m too broken for them I guess. I’m fairly tweaked about it, but we will figure something out. As a result, we will probably have to relocate back to Florida. I am sure going to miss the weather here in SoCal. The length of the process (medical board process) has allowed me to get healthier and stronger. My immune system is almost back to 100%. And with the exception of a scare back in April when we thought I might have leukemia, my recovery has been fairly uneventful. We have tried to go about life as normal, but there is a lot of uncertainty about everything. Where will I work? Where will I get medical care? Where will we live? Etc. I’m sure these are questions you guys deal with every day, but a lot of it is new for us. The Navy has given us security for quite a while now. Losing that is scary.
I’ve learned quite a bit as a result of this experience. Most importantly, never take a day for granted. I know it’s cliche, but I had a 3 month break from cancer last summer and I treated it like it was no big deal. It was a huge deal. You never know when that demon will start creeping back into the light. It is so insidious. I’ve also crossed a bunch off my bucket list, although it gets longer by the day. I’d like to say I’m no longer an asshole at times, or that I don’t act like a jerk when someone cuts me off, or I don’t get cranky when I don’t get my way, but I guess there will always be things to work on. I mean, it didn’t turn me into a buddhist monk or anything.
Well, I’ll close this out for now. Thank you for all of the thoughts, prayers, and encouragement. We definitely appreciate it. Please keep Ken Pace (who is undergoing a bone marrow transplant for myeloma right now) and all of the people battling this monster everyday in your thoughts and prayers as well. And enjoy your day. It’s a blessing.
Well, as most of you who will be reading this already know, the midway PET scan came back “essentially normal”. After interrogating my oncologist, I found out that essentially means all gone. Great news. For anyone not familiar, a PET scan is sorta like a MRI. It can see cancer cells by their metabolic activity. So if it shows you’re clear, then you’re clear.
It’s hard to believe how quickly this has all gone. I’m still trying to deal with the initial diagnosis. Stage 4, kidneys, adrenal glands, pancreas, great vessels, bones, chest, you get the idea. Everywhere. My first thought after hearing the diagnosis was “I’m going to beat this”. Despite the numbers I saw on the internet (61% survival rate, people 21-39 have a higher mortality than any other group) and the path report, my attitude was “I am one of one. The only numbers that matter are mine. 100% cure or 100% dead”. And there really wasn’t much in between. I’d love to say it was some sort of bravery in the face of death or something heroic, but it was more like stubborn denial. I just wasn’t ready to accept it. Probably still not ready to accept it. I haven’t had any interest in reading about my condition, researching different treatment modalities, modifying my lifestyle radically (like eating raw veggies or drinking micro-filtered water), or any other stuff like that. Sounds like denial to me. And yet here I am, sitting at the verge of 100% success. Feels weird.
You read about people making these huge life changes after being diagnosed with cancer (or getting some other horrible news). The only thing I’ve tried to do is be nicer to my family and enjoy their company more. I’ve probably failed 90% of the time. I won’t lie, chemo makes me a real ass sometimes. Some miracles take time right? The other side effect is “chemo brain”. Ever wake up and feel like you can’t shake the cobwebs out? That’s chemo brain, 24/7. So I probably have made some major decision and I just don’t remember it. Maybe I should start writing stuff down. Chemo brain is also the reason I haven’t been blogging. It has been difficult to organize my thoughts enough to put something coherent down. Regardless, I’ll soon be out of an excuse. My hair will grow back, I’ll hopefully lose the extra weight steroids have put on me, my brain will clear up…and life will move on. All I can do is hope the lessons I’ve learned during this experience stay with me longer than the side effects do.
Well enough whining. How about the positive stuff? I have been back on the road running. I have stretched my distances back up to ~ 3 miles per run. It has been very inconsistent, I generally don’t run for the first 6-8 days post chemo and then try to catch up for the following 10 days. Not exactly a Runner’s World approved training plan. I’m sure after March 22 (last chemo day), I can get back on track. The other really positive thing has been San Diego. We like it here. A lot. The weather is spectacular, the hospital has fulfilled everything we’ve needed, and all of the peripheral stuff is great too (schools, housing, etc). I’m glad we decided to come here. Not sure I would have been doing as well if we would have gone to Portsmouth or Bethesda. Certainly wouldn’t have been wearing shorts every day in January. And it’s a good thing we like it because the Navy is telling me I’ll be here pretty much until the end of time, or retirement, whichever comes first. That will be good. Continuity of care and Hannah can finish high school here. Yeah, high school.
So there you have it. My brain on chemo. Not pretty folks, not pretty. Thanks for making it this far. And speaking of, I do appreciate all of the support from my friends and family. There is no way I’d be here without all of you. I think about just about everyone of you guys everyday. Thank you. Till next time.
So to resurrect the blog, I guess I’ll do a little update. As most of you reading this blog already know, I was diagnosed with Non-Hodgkin’s Lymphoma just after Thanksgiving. Large B cell NHL to be specific. Stage 4, throughout my abdomen. Spent ~30 days in the hospital, some in Okinawa, most at Tripler Army Hospital in Honolulu, Hi. It was pretty much the suckiest time ever. I have spent the better part of the past 5 years working in a hospital, and I love it, but 30 days as a patient is a whole different ball game.
As a nurse, I understand most of the medical lingo, doctor speak, procedures, etc. As a patient, I was still scared as hell. Understanding a procedure doesn’t hurt, the biopsy needle in your back does. And waiting on results, well, let’s just say that’s no fun either. I can’t describe the feeling you get when the Oncologist is there telling you that it’s cancer. It’s pretty close to the feeling I had when the Family Practice doc told me I had Pancreatic Cancer. Yeah, I’m a guy, but I have to say it was real hard not to cry. I mean, what the hell do you say to that? Cancer. Really. At 36. Really?
The good news is that I made it through so far with no significant complications (if you don’t count the week in the ICU with borderline kidney failure AKA: Tumor Lysis Syndrome). The most difficult thing has been figuring out the military side of all this. We knew we were going to end up in San Diego, just not when. Turns out we left the Tuesday before Christmas. We are still waiting on orders to be here permanently. Looks like I will get temporary limited duty orders until I get better. Pretty crappy don’t you think, makes me think they don’t think I’ll get better. Oh well, just have to prove them wrong. On a positive note, we have managed to get into housing, buy a car, and get a small amount of house stuff together to make this somewhat livable until our stuff gets here from Japan. And So Cal is pretty nice. I’m not sure I’ve seen a cloud since I’ve been here. 70 during the day, 50 at night. Not bad for January.
Chemo is going well. The first round almost killed me (or at least I thought so). The second round wasn’t so bad. The first time around I had a reaction to one of the chemo meds, heavy duty nausea, and 4 days in the fetal position. This time, I went to the gym on day 2. I wasn’t exactly bringing down the house, but it’s an upgrade. I hope the next 4 rounds go this well. Maybe I can still catch a marathon this year.
Before I go, I want to say a special thanks to a few folks. #1 is my family. Cancer doesn’t just suck for me, it sucks for the whole family. Angela and Hannah have been awesome throughout this whole ordeal. I’m not sure I would be handling it so well. I am blessed for sure. #2 is my parents and extended family. You guys are wonderful. #3 are all of the folks who have helped us out through this process, namely Jeff Petitt, Shelley Perkins, Colby O’Quin, and Bill Wiegmann. If not for these guys (especially Jeff), I’m not sure where we would be. Thank you guys for taking care of the Okinawa end of this. There will always be a cold margarita waiting on my deck for you guys. #4 but certainly not least, I would like to thank the following people: the Hinkle family, Kroger family, Bolling family, House family, O’Quin family, Oliver Mattoon, Maria Yamzon, and Sandra Berg for your donations. Next time I see you guys, it’s on me. I can only hope it won’t be that long until I can make good on that promise.
So that’s the update. Cancer, chemo, San Diego. If you would have told me all of this on Nov 1, I would have been very skeptical. I guess it just goes to show, you never know what’s just around the corner. Until the next installment…