2019 BHAG - DK200 !

Hey, team! Well, it was a very eventful fall and early winter. I got my stem cell transplant on 18-sep and things have gone great since then. You can get more details over on my MyLifeline site - https://www.mylifeline.org/gflorentine .

The big news is that I've set out on my 2019 BHAG (Big, Hairy, Audacious Goal). I've signed up to do a 200 mile gravel bike race - the Dirty Kansa 200. Details about the event can be found here. It'll be a very big accomplishment if I can complete the race! I'm going to start blogging about my training here, since Susan thought it would be fun and informative to hearof my story from stem cell transplant to DK200 finisher.

I'll start with a bit of context. For a few years, I've toyed with the idea of doing this race. It's long, tough (gravel, hot, humid, maybe bad road conditions if it's rained alot). Last year there was a head wind for 50 miles of the race. The race draws riders from all over the world and is considered one of the premier gravel races in the world. For me, the goal will be to survive and finish and beat the 21 hour cutoff time.Susan and I made an agreement that if I got through the transplant OK, I would try this race, which is on 1-jun. So here we are!

The race in brief:

• Long. 206 miles in one day is alot.
• Gravel is slow compared to paved road
• My power output is about 80% of what it was two years ago
• I've lost 15 lbs, probably about 10 of it being muscle mass. In general, being lighter means being faster on the bike, but not if you lose 7% of your body mass in muscle
• It's self supported. There are four places on the ride where you can get help from your support team (aka Susan). Other than that, you  have to be self sufficient.
• It's long. Might have already mentioned that
• It's a fueling and hydration marathon. If you don't put food and water in the top, power won't come out of your legs.
• I've got two great team mates which will ride the race with me. Their lives have both been touched by cancer so they "get it". 
• If the race was tomorrow,  I absolutely could not finish it. I have 4 1/2 months to get strong and be ready for a fantastic day in the saddle
• I'm excited, apprehensive and SO happy to be healthy enough to at least try to do the race.
• I have no idea if I can get ready. But  the challenge is fantastic and if my body responds well to the training loads we'll take on, I should be ready.
• For the first time since I stopped racing crew after college, I have a coach.I also  have a new bike and new  power pedals to help me train. The bike is great,  my coach is great and I've got all the tools to make this thing happen.

We'll see how it goes!

Speed bumps and false summits

Hey, guys! I thought I would give you an update on how the summer  has been going. In my previous post, the timeline for a BMT  was late June. But surprise! That didn't happen. What did happen was two months of fun and games that I know some of you have been wondering about. So here's the summer '18 recap!

• How about some leukemia to top off your tMDS diagnosis? Over the last 12 months I have developed a genetic mutation in my bone marrow, probably due to all the chemotherapy I recieved in '10 and '11. This causes me to become anemic and if untreated would eventually kill me by preventing my marrow from producing blood products - RBCs, WBCs, platelets. Hence the need for the bone marrow transplant. So, we get the BMT scheduled for late June, and in mid-june I go to CBCI to get checked out. But surprise! Sometimes tMDS morphs into AML (Acute Myeloid Leukemia). This is anotherr blood disease caused by problems with your bone marrow. This can also kill you. So - great. Now I have two things trying to kill me. Ugh.
• Once we discover this, my care team tells me that we need to knock down the leukemia before we can do the BMT. "Great!", I  say, What does that entail? Oh, just a 30 day stay in the hospital. And the first 7 days you're looked up an infusion poll EVERY SINGLE FUCKING SECOND OF THE DAY. So - rather than going in for a bone marrow transplant in late June, I have to go to chemo  summer school and do a  30 day session. IN THE  HOSPITAL. EATING HOSPITAL FOOD. WHICH SUCKS. 
• OK, to be a bit more fair. Foothills Hospital in Boulder is just awesome. New facility, great staff, great resources. And the food is a solid B-. It's  definitely not a C. But after several days, it just starts to wear you down. Everything is just kind of mediocre, unoffensive and it but it was definitely a drag and you  realize that they could make it better by simply spending more money on the food and preparation. But in this climate of ultimate cost control in the health care industry, that's a tough sell.
• What to bring when you're in the hospital for 25-30  days? I knew up front that for much of the time, I would actually feel OK. So for me, the biggest challenges were boredom and also a strong desire to support my work colleagues as much as I could. Here are the tools I  used to create my own mini VRBO/consulting gig at the  hospital:
• Chromecast ultra device, talking to my hospital TV and my laptop over a private LAN I setup. Important for streaming World Cup games (and other things like Netflix). The hospital staff were super nice in helping me set this  up and it was great to be able to watch World Cup games over fubo.tv and stream our favorite shows on the room TV
• Road bike and resistance trainer. Because it's Boulder, the culture is very supportive of staying active while receiving care. I setup my road bike and my bike trainer in the room and would try to spin for 30 minutes/day. I used Zwift and Strava to  post my results online. Zwift is a fun virtual cycling community and Strava is where I  post all my workouts. I'm very anemic (hemoglobin hovering around 6.5) so I'm not putting much power into the  pedals. But it was emotionally a great lift to get on the  bike and push myself a bit and I did elevate my heartrate a bit on  these rides (usually < 155 bpm), so I was getting a bit  of  a workout.
• guitars. Because of course, music therapy is awesome!
• here are a few pics from the VRBO/jail cell:
• Susan playing guitar while I do a Zwift workout on my bike:

• guitar, workstation, bike setup:



• missed our 3rd family member Athena, so a quick skype session with her and Susan:

• low points of a 30 day leukemia induction
• You're in jail. In my case, it was a very nice, 5 start VRBO kind of jail, but it still's jail.  I got outside every day and tried to get in between 1-2 miles of walking. That was a huge win for me. Not everybody getting this treatment is healthy enough to do  this but for me, it  was great. The hospital staff was great in their  support of me being active. When I was on  the pole,  I would do 21 laps/mile inside and get outside a bit to have meals on a nice patio. Once I was off the pole,  I would do laps inside and outside of  the hospital. Huge plus for me.
• Neutropenic fevers. When your white blood cell counts go low,  it's very common to get fevers. In my case, they were pretty intense. > 103 fever all night is not a recipe for a good night's sleep! And as an added bonus, try slamming an ice bag on your femoral artery (aka groin) at 2 am in the morning. Gets your fever down, but not much fun.
• low platelets causing leaks. I had a 14 hour nose bleed due to some irritation I had in my nose and a low platelet count preventing good clotting in my nose. We tried clamps, ice, (multiple) tampons up my nose. It started out slow but just got worse and worse through the day. By the evening, I was getting two units of blood (more on that later!) and the blood was flowing out of my nose at about the same speed as it was coming into my arm. Eventually I got a  bag of platelets and the bleeding finally stopped. This was the only time in this 30 day run where I started thinking "OK, I'm ready to be done with this." I'll be happy if I never have that experience again!
• I literally shit myself. Yes, this was disgusting. In my defence, you try having a messed up GI tract and a night of hallucinating with a 103 fever and see how you do. I woke up one Saturday morning and thought "what the fucking hell happened in  here last night? This room smells like death". And then I realized - great, I really am two years old and have shit myself in my sleep. I got up, changed all the  sheets and moved on. But - ugh. 
• Privacy? Nope. You are a science experiment. These are common questions that you will be asked multiple times/day:
• Have you taken a shit? What consistency? What color? How many times?
• Have you peed? How much, how freqeuently?
• Let me take your vitals. AGAIN and AGAIN and AGAIN. Every 4-6 hours for 30 FUCKING DAYS. Yes,  it's necessary and yes, all  the staff was awesome and would be flexible in their timing if I was on the bike or walking (love you, 1 North team!) But it's still a super invasion of your privacy. Of which you have none.
• Hurry up and wait. This therapy strips alot of cells out of your bone marrow, with the hope  that when they come back, the good cells will be much more plentiful than the bad cells. There are some general guidelines for how much recovery (as measured by blood counts) you need to  have before being discharged. So for several days, you anxiously await your blood count results to get an idea for when you can break out of jail. For me, that was day 30. That's A LONG FUCKING TIME TO BE IN THE HOSPITAL.
• Ok, so after the leukemia induction, we're FINALLY ready to rev up the bone marrow transplant. I go back to CBCI, where I again go through a battery of  tests:
• blood work
• pulmonary function test (I always do great this so I enjoy taking them). I mean, who else can do 100% O2 sat on room air at 5400 feet with only 40% of normal red blood cell count. That would be me, bitch! So, serious humble brag on this one.
• bone marrow biopsy. kind of like having a cork screw drilled into your pelvis. Some people really hate this but I've had quite a few and have gotten  used to them. Not a big d eal.
• echo cardiogram. Go in a dark room and have a (typically 30 something woman), rub goo on your chest and rub a sonic transducer on you while taking pictures of your cardiac function.  Yes, it's just as weird as it sounds. Again, I do well on this test so it doesn't cause me any anxiety,  but it's just another irritating thing you have to go through to get your all event pass to the big BMT dance!
• psych/social eval? More fun  questions:
• Do you have anxiety? no, I'm perfectly happy undergoing a procedure that may cure me, not cure me, or sort of cure me but give me live long, serious new problems. OF COURSE I HAVE ANXIETY, YOU IDIOT! But it's not cool to get all jinky on these guys. So I take a big breath  and try to gently describe my coping strategies, my zen like calm in the face of this serious illness. But again, it's some work to get through this.
• So after a few days of tests, we sit down with the  oncologist. And here's where I learn another lesson - you never want to  hear your oncologist say "speed bump" related to your treatment plan. Good news - my bone marrow looks quite clean after the 30 days hosing down we gave it. Bad news - one of those red blood cell transfusions caused me to develop an antibody to a particular protein structure on some red blood cells. And this means that my donor  (son Kyle) cannot give me his stem cells. So we have to find another donor from the donor database. And my great care team has already done this and have found a good match. My reactions too all of this:
• Yeah! you guys are great. Thx for having a solution to this new problem.
• WTF? You gave me the blood products that fucked up our plan. Aren't you guys supposed to be good at this? Why the heck are you giving me blood products that could cause this problem? Isn't this why we qualify blood products? Argh. 
• So now we have a harrowing few days trying to track down the donor and getting a final head nod. Because, you know, if he  says no, I'm KIND OF FUCKED. But yeah - he says yes!
• So we're back on the happy path to a  BMT and living happily ever after! But - and my summer has been full of buts - my care team is worried that too much time  will have passed between the leukemia induction completion and the BMT. So - surprise! Let's do more chemo.
• This session is  a six day session - one day getting chemo, one day off, repeat 3x. The normal protocol is to into the hospital for six days. To which I politely replied "NOOOOO!" So, working with my great care team,  we've figured out a way for me to do this as a pseudo out patient, so I can sleep at home and not be trapped in the hospital between actual infusions.

So here we are! New BMT date is  11-sept (auspicous, eh?) I finish my latest chemo today (9-aug-2018), recover for a few weeks and hopefully climb into the ring for a very successful allogeneic stem cell transplant. Fingers and toes crossed!

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!

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!

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.

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!

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.