Friday, June 15, 2018

Summer camp!

Hey, guys. I’m getting to go to a cool summer camp in July! It’s got 7x24 room service, in room dining and you can play your guitar and ride your stationary bike anytime you want. Pretty cool, eh?

Translation – I’m getting another stem cell transplant and will be at PSL in Denver for all of July. Ugh. Long term prognosis is good but early July will suck pour moi. As a result of all the chemo I've received my bone marrow has developed a genetic mutation and I'm having trouble generating red blood cells.

Susan and I will start blogging here to keep folks updated and I'll also be posting some very, very slow Zwift rides on Strava from my road bike/trainer I'll have in my hospital room.

Here's the long life and the hard work to make it happen!

Sunday, February 12, 2017

7 years

Well, it's been a few years since I've updated this blog. With my 7th cancer-versary  coming up this week, I thought I would check in and give the blogosphere an update on  wazzup. So, without further adieu...

I'm still (pretty) healthy! That of course is the big, fantastic news. I'm down to yearly oncology visits and I'm also participating in a long term study of patients that were given a regimen of SGN-35 (commercial name is brentuximab) following an autologous stem cell transplant. These studies are pretty funny (if you have a macabre sense of humor). They call you every year and ask you "hey, are you still alive? If so, any symptoms of a relapse? If not, how are you answering the phone?" Or something like that...

More on the health department. In 2010 I developed a blood clot in my left arm, probably due to the  port I  had in my chest. Over the following year, that  clot resolved into some scarring in the vein under my armpit. My body compensated in a pretty cool fashion - I developed some pretty large surface veins above my left pectoral muscle. As my oncologist described it "your vein interstate has got some debris in it, so your body enlarged the surface streets." Pretty amazing, really. My left arm is almost completely normal, which is great. If I exercise a lot (ex: swim several hundred yards of free style), my left hand will turn a bit purple, due  to delayed blood flow return. I'm not sure this will ever resolve, so my hope is that it doesn't get any worse.  I can play hockey, do push ups, pull ups, ride my mountain bike, etc. so it's not held me back much from being as active as I want to be.

Next health issue - bleomycin induced damage to my lungs. I still notice this and I suppose that after 7 years, it's likely that it won't get much better. But my oncologist is fairly confident that it won't get any worse either, which is good news. I've had several PFTs and I always test as super-positive, but I definitely notice that my lung function is less than it was and I have periodic episodes where my lung function seems off a bit. I tend to exercise very hard on my bike so it's pretty obvious when my lung function is different than normal. After the initial problem in 2010, my oncologist was hopeful that my lungs would completely recover in a few years. But after 7 years, I'm thinking that this is about as good as it's going to get. I wish it was better but I'm still plugging away, running, biking, playing hockey, etc. So compared to most people that have any sort of significant pulmonary illness, I'm doing great so I'm not going to complain!

Mental health check - pretty  good, I think. Susan and I continue to have a tremendously awesome relationship and we've both had enough health issues over the years that we don't take anything  for granted. Our immediate family is very healthy and we're getting new grandchildren and grand-nieces/nephews every year or so. Whenever we get a new arrival in our extended family, I take a moment and realize that this was one of the things that I was fighting for - living long enough to see my family continue to grow and get to know the next generation. Grand-parenting - greatest thing ever!

My cancer advocacy continues -  Susan and I have volunteered in an infusion department and we are involved in supporting a couple of local Camp Kesem chapters here in Colorado. It feels good to give back after  having received such great care and having a pretty good outcome, considering how sick I was in 2010/2011.

I supposed that after 7 years of survivorship, you might wonder if I've gained any great perspective on life, serious illness, death, etc. I think the biggest thing I've taken out of the experience is what many people feel - the sense that every day is precious and to take nothing for granted. I've also realized that the most valuable thing you can have in your life is love. Your health might be great or not so great. But if you have love in your life, you'll do fine. And if you don't, being a world class athlete or acquiring great material wealth doesn't fill the gap. I'm lucky to have a tremendous  life partner in Susan and lots of love in my immediate family and friendships.

So I'll close by hoping that if you're reading this and you're dealing with  cancer in your life that you take the time and pay attention to your loving relationships. Do that and you'll be OK, regardless of how much time you have on this shiny blue ball. Here's to life!

Tuesday, March 4, 2014

Another clean CT scan

Yeah, yeah, YEAH! Another clean CT scan today. Wow, that's a relief. It's hard to put into words how unbelievably stressful and scary it is to face this kind of event in your life. But I guess I will try to do it. Ok, here we go:

Last month I had a few days when I felt kind of 'blah'. Just a general feeling of being off - a bit of nausea, feeling pressure in my head. Kind of like I was fighting a cold. No fevers, no night sweats, no itchy skin. In other words, no Hodgkins 'B' symptoms. But I'm worried that I have nasty tumors growing inside of me so I work up my courage, call my oncologist (who is awesome!) and ask to move up my CAT scan from late march to early march. So, we get it scheduled...

As the time of the CAT scan approaches (usually it's about a week or two out for me),  my imagination starts going. And I apparently have a REALLY good imagination when it comes to thinking about all the possible ways I could be getting another recurrence. Feel a pain in the middle of your chest? Before cancer, I would not have given it a second thought, or perhaps attributed it to muscle soreness from riding my bike or swimming. With a CAT scan approaching, I immediately have visions of mediastinal tumors. Pain in your back? Most likely from doing hill repeats on your bike. But me? Nope, I'm thinking that I have a tumor in my back, similar to the Hodgkins patient I saw when I volunteered at the infusion center last week. Trouble breathing? Probably an allergy, maybe a leftover from the bleomycin toxicity? (which isn't something to sneeze at - this article indicates that bleo toxicity is not good for long term survivability). But no, I've completely convinced myself that I have several large tumors that are restricting my lung capacity. This is primarily due to me knowing a few people that have had lung problems due to thoracic (chest) cavity issues - tumors, blood clots, etc. And then I start thinking about all the ways my life is going to change with a bad diagnosis - lots more treatments, lots of bad side effects, higher likelihood of an early death from this damn disease. So by the morning of the procedure, I'm basically a  mess. I feel like I'm going to puke, I have diarrhea (stress induced hyper-bowel, thank you very much) and I feel like either not saying anything to any body or start screaming at everything and everybody. And then the test. Which goes fine.

And then - The Wait.....

The wait sucks. You watch your phone, wanting it to ring so you can get the news and move forward. And wanting it not to ring, because you're afraid of what the answer is. So you decide to do some work. Which of course is close to impossible, because YOUR FUCKING LIFE IS HANGING IN THE BALANCE, WAITING FOR THE GODDAMN PHONE TO RING!

If you've followed the blog, you know that this is not a new condition for me. Back in 2012, I got all worked up, as I describe here. So you would think that with every passing CAT scan I would mellow out. But somehow, I seem to always engineer some set of ailments that put me on edge.

So I get the news, and it is awesomely awesome. And yes, that's a phrase that's OK to use because I just GOT MY LIFE BACK!!!! So after a few seconds of wild fist pumping, I calm down enough to chat with my oncologist and we talk about my symptoms that made me move up the CAT scan. When you have a stem cell transplant, you reboot your immune system, with either your own or some donor's. In my case, it was my own stem cells, so I now have a 3 year old immune system. And it's not quite perfect yet. So although I don't get sick much, I do have periods where I feel like I'm fighting something. Which I probably am. With my original immune system, I would never notice these battles. But with the Geo V2 system, it's still kind of immature and I can feel it when it's working. At least, that's the prevailing theory. I hope over time that these periodic, sub-clinical symptoms will go away and I will finally be able to relax in the period building up to my CAT scan.

But to end on a happy note - it looks like I'm still pretty healthy. More yeahs! It is so awesome not to be sick and have a good chance of living a long time. It's really fantastic, because I have had plenty of opportunities over the last four years to see things end differently for friends I've lost to cancer. So I'm so very grateful for pretty good health and the love and support of lots of people.

That's my update for today - health, happiness and joy. And now, off to write some code, ride my bike and hug my most awesome wife! TTFN - I'll probably do another post at the end of the month when I have my 3 year old immune system birthday party.

Sunday, February 16, 2014

4 years in the books

Well, today is the 4 yr anniversary of my cancer diagnosis. Yeah! I'm still here! And still pretty healthy! I was chatting with Susan today and we were reminiscing about how we felt that day four years ago. Surprised, shocked, scared, confused.  (I describe that day in this blog post). Mostly though, I just remember feeling determined to get through it. Looking back on it, I don't think I had a real idea of how hard it would be. No one ever thinks they'll have a relapse and Hodgkins has a very high survival rate, so I guess it was reasonable for me to think that I would have a few months of chemo and be done with the whole thing. If only!  Four years later and I still have a few symptoms from the treatment that I notice every. single. day. Here's a summary of the little presents I've received that keep on giving:

  • Peripheral neuropathy. This is mostly in my feet and it isn't too bad. It's hard to describe but in summary, I feel like I have little pads of something under the balls of my feet. My feet are always cold and I get random pains through my feet frequently. I've been able to run, mountain bike, ski and swim OK so in the grand scheme of things, this isn't too bad. In the cancer world, they talk about the "new normal", meaning you have to get used to changes in your body. Ok, I get it, but I reserve the right to privately (well, maybe not so privately) still feel that the New Normal SUCKS. I want to feel my feet, point my toes and have ALL of them point and in general not feel like I'm wearing an extra layer of cotton socks under my toes all the time.
  • Low hematocrit. My oxygen transport system isn't so great. I'll get  my blood work done in the next couple of weeks and maybe things have improved a bit, but my crit has been running around 38-39. Low normal for a man is 41 so I'm not too far off - the crit threshold for getting a  red blood cell transfusion is 24. I don't normally notice this when I'm walking around but as soon as I start running or biking (which for me is about 25 days/month), I notice it. My personal 10k best time is 38:42 and I'm now running around 70 minutes at altitude. I ran the 38:42 time at sea level 25 years ago so undoubtedly some of the slowdown is just age and altitude. So these days I'd be pretty happy running a 10k in around 50 minutes. But 70 minutes? I've gotten 20 MINUTES SLOWER than a typical pace for a recreational 55 year old runner. I mean, WTF? So this part of my health really, really frustrates me. I spend a lot of time saying to myself 'you're healthy, you're doing fine, quick whining, enjoy life." But just between you and me, dear blog reader, I FUCKING HATE IT that I am running so much more slowly than my body used to be able to run. Now, if you're a 70 minute 10k runner, you're probably hating me right now. I know it's all relative and there's nothing magical about running a 40/50/60/70/80 minute 10k. This is just me being a little whiny bitch, but if not hear in my blog, where can I get these things off my chest? So I keep running (25 runs in 2014 so far) and keep hoping that my blood chemistry will improve. My times haven't significantly changed in the past year so that's something but I sure would like to have more red blood cells!
  • Pulmonary health. I can still feel the damage from the bleomycin. Some days my lungs feel totally normal and other days I feel a fair amount of tightness and phlegm in my chest. I also tend to notice my lung (dys)function after I come home to Boulder after being at a lower altitude for a few days. I think that most healthy people can go from sea level -> 5400 feet without noticing anything so the fact that I notice it is a sign to me that my lungs are still not completely normal. This is probably also contributing to my relatively slow running/biking. When your lungs aren't great at taking O2 out of the air and you don't have your fair share of red blood cells, your little mitochondria in your (muscle) cells are not going to be very happy when you exercise. 
  • Scar tissue in my neck. I had nodular scerlosing Hodgkins (the most common type) and the result of this disease includes scar tissue from malignant nodes that have been whacked by the chemotherapy. So I still experience some random pains in the left side of my neck, especially after long bike rides. Of course, any pain near where you had a tumor instantly puts you into hypochondriac mode so I have to constantly reassure myself that there are no bumps and that the twinges are not a sign of any new disease. But it's stressful - I just want both sides of my neck to be perfectly, completely normal!
Ok, that's the irritating stuff. On the plus side of the ledger, I have lots of love and happiness in my life. Lymphoma is a tricky disease and it frequently can reoccur (as I know all too well), so my medical team will always be watching out for signs of a recurrence. But for now, all signs are that I'm pretty healthy!

 Four years ago I did the math and figured that if I wanted to live to 85, I needed another 12,410 days. Well, since then, I've had 1460 days of living which I'm very thankful for. Some of them have really sucked but by and large, it's been a pretty good four years. Our immediate family is in pretty good health and we've seen family members get married, have babies and have fun in their daily lives. We've also seen our share of fellow cancer survivors run out of time and pass away. Susan and I are volunteering in a local infusion center and that work certainly gives you perspective and makes you appreciate the good things in your life. 

So as I head into year 5 of survivor-ship, I'm thankful for my health, the most excellent wife any man could ask for, two most awesome children, two also awesome stepchildren, an amazing grandchild, a loving brother, a great extended family, love, friendship and, oh yeah, some seriously fun bikes to ride.

Ok, that's the year 4 anniversary summary. More updates after my next CAT scan in a couple of weeks!

Thursday, November 21, 2013

watching people die

Hey, the simple truth of the matter is that people die of cancer. When you're in the survivor battle it can be hard to verbalize this. We tend to have this "let's not talk about the bad stuff, because talking about it makes it real, gives it power, scares us, etc." So we frequently focus on the positives, give all our cancer survivors hugs and positive encouragement, chant the mantra that we can create our own reality and sweep the scary stuff under the rug. But today I got the privilege of talking with a couple of folks that are staring their mortality straight in the face, and doing it with a calm grace that was truly inspiring to watch.

The first person is an elderly woman, in the infusion center to get platelets. Normal platelet count is 150-400 and you can walk around with a platelet count of 80 and in general be ok. Her platelet count was six. At 15 they give you a platelet transfusion. So she is basically a train wreck waiting to happen. Brain bleeds, internal organ leakage - nasty stuff. You really need platelets to do what you'd like to do - like walk around without having your organs bleed internally. So you'd expect this woman to be super stressed, or terrified or something. But no. She just walks in (carefully, because if you bruise yourself when your platelet count is six, you are some kind of fucked.) Sits in the chair, gets hooked up, calm as can be and sucks up the life giving platelets. And oh yeah, she has an incurable blood disease and will be dead in six months. And her daughter is with her, bemoaning how the universe can allow someone to hit and run her car while she's transporting her dying mother to the infusion center. But through all of this, these people are as nice as can be - loving to each other, finding ways to laugh at all the little things in life that you have to deal with to live in the modern world. All the time looking down the barrel of the mother's imminent demise. It's just so amazing to see people cope with this kind of mortal threat with  dignity, grace and loving approach. When you talk to them, your efforts to help seem so puny and useless given everything they're going through. But as a social worker told  me, we give them a gift when we stand witness to their journey. So my pillow plumping and warm blanket wrapping may not have been much, but I was there (after a 2 hour commute in the snow) and it really felt like an honor.

The next guy is an old Russian. And he just looks like a zombie. I mean, really. He's old, yellow skin, skinny to the point of looking like someone from a concentration camp. He got three bags of red blood cells the day before. At the nadir of my treatment, I got two bags one day and it made me look and feel great. But he had three bags and still looked horrible. So you can imagine what he looked and felt like before he got his transfusion. And here is the dialog he has with the nurse:

"How are you feeling today?"

"Good!" (which is hard to believe, given his obviously whacked out blood chemistry and extremely low weight). "I was a bit tired, but better today. " Translation - if you need three pints of red blood cells, feeling a bit tired is a code word for being flat on your back, unable to move due to a complete lack of oxygen delivery capacity.

"How are the sores in your mouth?"

"Still there a bit, but getting better every day."

The nurse asks him several more questions and although he's not evasive, it's pretty clear that he's just not going to admit to anything really bothering him. And he does it all with a calm, dignified demeanor. Although I don't know the details of his prognosis, he's in WAY worse shape then when I saw him a month ago. If it was Vegas, I would bet heavily that he'll be dead in a month or two.

It's kind of a freaky thing to be in the presence of dying people. Somehow you think they should be wailing or shouting or paralyzed by their fear of dying. But in general, they just kind of look and act like you or me. Granted, they usually look pretty messed up but I've been amazed and impressed that these people manage to keep it together. Of course, they may be doing a lot of screaming and moaning and wailing in private but when I see them in the infusion center, their behavior is really a testament to the strength of the human character. They may not look like much to the casual observer, but I've gotten to know them enough to see the hero and heroine inside. It's an honor to get them a pillow and a blanket and maybe share a story or two.

That's the report from the infusion center. Just wanted to share the powerful things that go on in such a place while the rest of us stress out about whether our favorite football team wins on Sunday or what kind of dressing we'll prepare for our Thanksgiving dinner. Intense stuff, for sure. But rewarding to be able to witness.

Thursday, November 14, 2013

Geo on video!

This summer, I had the opportunity to participate in a video for Patient Power, a web site that provides information to patients about a range of health issues. It was really fun - we filmed for about three hours and talked about my cancer experience with a few folks from my care team. I never met a camera I didn't like! So if you want to hear me talk about my cancer journey with an emphasis on the recurrence phase, check out the links below.

another good doctor's visit! A healthy fall with lots to be thankful for

Howdy, all! Today I had another six month check with my oncologist and everything is still going well. So - yeah! I've been meaning to post for a while but thought I would wait to get through this visit and summarize how things are going for me. Here's the latest stream of consciousness on my health. If you know me personally and are just checking up or you found this through a web search, I hope this is interesting. If not - well, close that browser tab and go out for a bike ride! Ok, in no particular order, here we go:

  • Lots of things are still getting better slowly:
    • Lung function. Definitely better. Over the last few months I've basically stopped thinking about my lungs. They just feel normal. I haven't had a PFT in quite a while so I don't have quantitative data, but qualitatively, things are better. Less coughing in the morning, less tightness in my chest when I get up to higher elevations, no wheezing. It's been over 3 years since I had the interstitial pneumonitis (brought on by Bleomycin toxicity) and it seems like the lungs are still healing.
    • Peripheral neuropathy in my feet is less noticeable. Still there but less obvious than in months past. I'd like to start ice skating and playing hockey again and see how my feet do. Maybe this winter and next spring respectively for those two events.
    • Left arm is working better. I can now swim 800 yards and use my arm pretty regularly. By the end of 800 yards of freestyle my hand has a definite purplish tint so I have still have some problems with delayed blood flow, but again, seems to be better. As the days get shorter and colder, I think I will start swimming more. The only negative is that in the dry Colorado winter air, being in a chlorine pool a lot definitely is hard on your skin so I'll have to be better about applying lotion than I have been. The side effect is dry, itchy skin and since itchy skin can be a Hodgkin's B symptom, I definitely don't want to do anything to cause that symptom, less I get my hypochondria dialed up and start stressing about a relapse.
  • Things not getting better:
    • Blood chemistry. Hemoglobin is getting a little better (13.1 today) but hematocrit is still about where it was last May (~38). That sucks. I love riding my bike hard and running hard and both are pretty painful when you're anemic. I'm participating in a double-blind study for the use of Brentuximab vedotin in relapsed Hodgkin's patients that have had a stem cell transplant, but I'm pretty sure from my response that I got the drug. And one of the adverse effects of the drug is low platelet counts (mine is 115, low normal is 150). So my oncologist and I are thinking that my anemia and low platelets may be a side effect of the brentuximab jacking around my bone marrow. Another data point is that my red cell average size is still around 110%. This is a sign of immature red blood cells. My onc isn't worried and I'm really living a pretty great quality of life, so I'm going to try to be a bit more healthy in my lifestyle (more fruits and vegetables, less alcohol, fats and sweets) and give my body all the help I can to have healthy bone marrow.
    • I have some intermittent, low grade chills. This is the most worrisome symptom since this can happen with lymphoma. But I'm also a bit temperature sensitive, so we're thinking I may have some thyroid issues at work. We took some blood for that today and we'll have results in a week or so. I don't have night sweats, not running any fever, no other 'B' symptoms so we think there's nothing serious going on. But it is one of those nagging things that can be stressful.
    • Thin hair. My hair is definitely thinner than it was before. I'd like it to be thicker, primarily as another sign of health. The good news is that I have less grey hair! Anyway, I'm not going to do anything about this either, but it is another subtle sign that my body has been through a lot in the last few years.
  • To CAT scan, or not CAT scan? I'm now far enough out from my transplant that I can have some flexibility in how frequently I get scans. The upside of a scan is that you can find problems early and early detection can help long term prognosis. The down side is that CAT scans give you A LOT of radiation and at some point, you start entertaining serious risk for radiation caused illness - leukemia, heart problems, etc. I've gotten a number of CAT scans in the last three years so today we decided that I would not do a CAT scan this month, but wait until next march and then do them for the next three years on an annual cycle, assuming that no other symptoms present themselves. So again, it's a bit of a crap shoot and you kind of worry that you might be sticking your head in the sand and give tumors another six months to grow in your body. Which is pretty much a disgusting thought. But if you get too much radiation, you will get sick. Mutations can cause malignant cells to be produced and it would be a really stupid move to get another cancer from doing so many diagnostic tests to detect a cancer that you don't have. Now that would be ironic - but not good. So that's the decision. If something bad shows up in march there will be a lot of anguish that we decided to go this way, but with no acute symptoms today, I feel comfortable with the decision.
Well, that's about it on the health front. Everything else is also going pretty well. My immediate family are all healthy and happy and I'm enjoying riding my bike, running and being with friends and family. I have had a few folks I know die of cancer in the last few months which is super sad and obviously strikes close to home. But I don't think that's anything special to me - if you're a 50 something in this day and age, you probably know people that are both cancer survivors and have died of cancer. So when I get down about that, I give Susan a big hug, think of all the good things in my life and get on my bike and ride!

that's it from here. I hope you're having a healthy fall and thx for checking in! Look for my next post where I will shamelessly post pointers to a video I shot this summer about cancer survivorship. ttfn!