Day 15, cycle one. More good news and crazy bone pain

Howdy, all. Today is day 15 of cycle one and it's been a pretty good day so far. Items of note:

• Looks like I will only have one more 21 day cycle of ICE. I think I misunderstood the protocol and thought I would do 4 doses. Turns out that for this protocol, the three doses at the beginning of the 21 day cycle constitute an entire cycle (in ABVD a cycle is 28 days long and consists of doses on days 1 and 14). So this means I will only get one more dose of ICE and the entire schedule will move up by six weeks. Yeah!
• My nodes that are misbehaving are continuing to shrink. Most people would call these tumors but having seen them on an ultrasound, I prefer to think of them as misguided lymph nodes. They have normal lymphatic cells in them but they are also resident to some black hat cancer cells. So not purely a tumor like you'd get with a hard tumor cancer like prostrate or breast cancer. Anyway, they're definitely still shrinking. One has gone from marble to pea sized (4 cm -> 1.5 cm) and the other one isn't detectable by an external exam. So this means that I am responding well to the chemo which is a big first milestone to get over to pave the way for the stem cell harvest and transplant. There's no use harvesting your blood white cell stem cells if you'll still got a bunch of cancer in you so to even get into that program you have to be NED/CR (No Evidence of Disease, Complete Response). So this is all really good news.
• I had a crazy day last week from the Neulasta, which is given to boost your WBCs after a dose of chemo. One night last week I had some weird bone pain. One manifestation was that I could feel my heart beating in my sternum and my lower back. I would stand up, walk around and then sit down and could feel my heart beating - and my bones would hurt with each beat of my heart. Not fun and sort of scary. The next issue was that I stood up from a chair in the evening and felt shooting pains through both my hits. Felt like I had broken my pelvis in two places. Ouch! And the next day I woke up and felt fine. Went for a spin on the stationary bike, had a normal day at work, no issues. And over a 4 day period starting with that crazy day, my WBCs when from 1.96 to 8.02. (normal is 4-9). So my bone marrow has been busy producing new white blood cells. My oncologist noted that this means I have very healthy bone marrow since it was so responsive to the Neulasta. Yeah! This is another good indicator that I will come out of the stem cell transplant process and recover well.

So the summary is that things are going well and my initial treatment will be six weeks shorter than I thought. Now we've got to get going on the whole stem cell transplant process. I've read a handout and have some sense for what's next, but we'll get some training on the details so we're well informed before we start that protocol. I'll keep you up to date as we lock in the specifics.

Many folks have asked how they can help and there is one area where you may be able to lend a hand. During the 4-6 week period after the transplant I will hopefully be at home (not in the hospital!) but I will need 7x24 babysitting since I won't be able to drive and need someone nearby in case I suddenly take a turn for the worse. When your immune system is so depressed you can get sick pretty quickly and if that happens, I'll need someone to drive me down to Denver to the oncology office. We'll definitely ask for help as needed to give Susan and other family members a break from being my baby sitter, so think about whether your schedule would allow being a during-the-day chauffeur during a period that will probably run mid-March to mid-April.

Ok, that's it for now. Have a good Monday, and enjoy the fact that your bone marrow is making happy, healthy white blood cells without making you feel like you just fractured your hips in multiple places!

week 1 - bumps are shrinking. Take that, bitch!

Had a pretty good day today. But before the big news, a summary of last week. I did the ICE protocol last week. Kind of a pain logistically. With ABVD you get it all in a 3-4 hour period, typically on monday. With ICE, you get it over 3 days.  So I was in the chemo center 4 days in a row. 3 infusions, including an overnight infusion administered by a little pump in a fanny pack I had to take home with me. Then a WBC booster shot on Thursday. And I felt kind of punky through the weekend. Luckily the chemo center is about 5 minutes from my office and only 15 minutes from home so it's really easy to get over there.

But the good news is that the two bumps on my neck are definitely shrinking!!! I went into the oncologist this morning and one of them is a bit smaller and the other one has pretty much disappeared. Man, when these drugs work, they WORK! And this week, I'm feeling pretty much back to normal. Sleeping well, GI plumbing pretty much back to normal (I HATE being constipated..) and I'm working out with moderate energy (10 mile bike Saturday, 2 mile run Sunday, 6 mile ride yesterday, 20 minutes on the running treadmill tonight).

I will probably lose my hair but that typically doesn't happen for another few weeks. So for now, I'm feeling ok, feeling really good that the cancer cells are getting their asses handed to them by the chemo and I look pretty normal (well, as normal as I ever look).

So that's the quick status. I've got some other more philosophical ramblings I'll post here in a bit but for now, that's it. Hope you're  having a good week!

uh-oh. Failed the lumps and bumps test. More chemo starting tomorrow

 Well, shit. About a month ago I went in for my monthly checkup and my oncologist felt some enlarged nodes in my neck. Turns out I have some more malignant cells growing in my neck. The oncologist thinks that they're probably holdovers from the cancer I had last spring (as opposed to new stuff that started in my bone marrow).

Getting a recurrence this quickly isn't great news and the next round of chemo to root it out will be more extreme than the treatment I had last spring and summer. Here's the game plan:

• 3 months of ICE, a protocol typically used for non-Hodgkins to get rid of this latest set of malignancies. I'll probably tolerate this ok and will be able to continue to work. Will probably lost most of my hair (again).
• Harvest my white blood cells and separate out some white cell stem cells.
• 5 days of very intensive chemo that will really wipe out my immune system. After this I will be pretty beat up and without getting a white blood cell transplant (from myself to myself) I'd be at great risk for a whole host of nasty infections.
• Get my own white blood cells back and regrow my immune system (4-6 weeks of feeling pretty beat up while I recover from the high dose chemo). I will take a 2 month leave of absence which will allow me to recover at home without much exposure to bugs that could get me sick. I envision lots of walks and  hopefully (slow) bike rides to help me recover my health through this period.
• Participate in a clinical trial over 21 weeks that gives me a maintenance dose of a very successful new drug for getting rid of any residual cancer cells. At this point I will be back to work. I'm not sure if this maintenance dose will prevent me from regrowing  my hair or not and what impact the dose will have on my blood chemistry.
• Live a long time!

During the last month I went through the standard set of diagnostic and staging activities -PET scan, core biopsy, echo cardiogram, PFT for lung function, bone marrow biopsy, PICC line insertion. The good news it that I'm pretty recovered from the last chemo protocol - all my numbers are equivalent to where I was last February. So I should be able to tolerate this next round of chemo well. And the cancer is much more localized than it was last February and will hopefully respond well to the ICE protocol I'll receive here over the next few months.

As you can no doubt guess, this has really rocked our world and I've spent the last month or so coming to grips with this next step of the journey. It's been a pretty scary, sad and angry time for both Susan and I. We've gradually let our friends and family know what's going on and have received great support and love. With this post, we've now gone completely public with our status. I'll probably start blogging some more as it does provide a way to express what I'm feeling and it's also a great way to keep people in the loop on how things are going.

One perspective I've gained that has helped a lot is that this latest treatment doesn't need to cure me for 30 years. It just needs to keep me healthy long enough for the next advance in medicine to combat whatever strange things happen in my lymphatic system. That perspective has kept me from going totally psycho over worrying if this next treatment can do what the previous ABVD regimen could not do, namely keep these malignant cells from multiplying in my lymphatic system. I've also been doing a bunch of guided meditation to think really positive thoughts about my health and longevity to help my body do the right thing.

So this pretty much sucks but it is what it is. Tomorrow I'm back in the big chair for more medicine that will help me get better! So I'm psyched to get that going and feel the nodes in my neck shrink back down to normal levels.

That's it for now. Send positive energy my way and I'll keep you up to date on how things go!

After Cancer - Chop Wood, Carry Water (by Susan)

There is a little anecdote I remember reading in a book about Zen Buddhism.  Here is how it goes:
Q:  What do you do before enlightenment?
A:  Chop wood, carry water.
Q: What do you do after enlightenment?
A:  Chop wood, carry water.

The meaning is, of course, that when you have a great mental shift, outwardly everything stays the same - it's just the way you experience it that changes.  It also means that the mechanics of daily life still must go on even when you are "enlightened".  You still need to work, still need to eat as long as you are a physical being.  You don't get out of these activities by being an enlightened person. 

The same thing is true of surviving cancer - you go through a huge shift in your perspective but no one can see it but yourself.  It seems that the doctors patch you up just enough to put you back in the saddle - they bundle you off back to work and then wave goodbye (if you are lucky).  You think "Wow - I'm a survivor!  I made it!"  and then you just have to go back to the mundane life of earning a living and taking care of your responsibilities. When I survived my own cancer ordeal I somehow thought that I should just get some lottery money, or the government should subsidize me as reimbursement for all of the pain and hardship that I had been through.  Sadly, this was not the case - as soon as I was healthy I was back working again.   The difference in perspective comes in when you treasure that moment of  talking to a friend on the phone, driving to the supermarket, or  drinking your morning cup of coffee and looking out the window at a new day. Activities that used to be boring or taken for granted become precious when you think that you could have lost them forever.

I think George has been going through the same thing lately.  It is part of being a cancer survivor.  He is really looking great - having his hair, eyelashes, and eyebrows back makes him look like his old self.  But it takes longer to feel like your old self on the inside.  It takes time to trust your body again and believe that you have time.  

As for me, I wake up every morning gving thanks for having George in my life.  Taking walks, going on bike rides or runs together, eating out and having him enjoy the meal - these are wonderful activities.   Just lately he has gotten his spark back - laughing more and being generally feisty and ornery.   We are so looking forward to a warm holiday season filled with loving friends and family to cap off our Fabulous Fall.

On the food side, I have been sticking pretty well to the vegan diet, and I have some good news.  I finally got my blood work done and my cholesterol has dropped 45 points from where it was a year ago.  This is all without any drugs.  I have not changed my exercise habits or lost any weight (my weight has stayed the same), but my cholesterol dropped dramatically.  The drop all came in the LDLs - my HDL and triglycerides stayed the same.    My cholesterol is now in the normal range.   I am still trying lots of new recipes and have become quite used to the vegan lifestyle to the point where I don't miss animal products at all.    When I do eat them now I don't even like them any more.  Dairy feels gunky and meat has a weird texture.  However, a really fresh salad can taste heavenly.  I have had some people ask me about my calcium intake.  The answer is that you can get plenty of calcium from leafy green vegetables, grains, and beans.  I am getting a bone density scan next month so I will see if there is any difference there from last year.   

Next week is Thanksgiving.  I will be bringing some vegetable dishes (but NOT eating Tofurkey).   No matter what you eat, the important thing is to give thanks for the people you love.    So maybe I should revise the statement to be, "After Cancer - chop wood, carry water, and LOVE it!"

all clear at two month post-chemo check-up

Just got back from  my two month post chemo checkup. The GREAT news is that everything seems to be going really well. Yeah, me! Yeah, my body! Man, it's a sunny fall day here in Colorado and I am just diggin' being alive and (relatively) healthy.

A few more details as I continue my habit of sharing all the minutiae of my illness with you, my faithful blog follower. You'll remember that I had some funkiness going on in my back - what looked like a compression fracture in my T7 vertebrae. You can see from the MRI picture below (click the image to get a larger view) that the vertebrae is slightly trapezoidal in shape (should be square) and it's a bit discolored (indicating some healing going on in the bone).

And let's talk for a second about the MRI machine to get this kind of picture of your thoracic region. If you're claustrophic, you wouldn't like it! The top of the tube is about 4 inches from your face. I kind of thought it was cool - like being inserted into a torpedo tube. But if close quarters aren't your thing, you might want to get some pre-medication to calm the nerves. And talk about loud - wow! Kind of like a crazy, techno beat that you can hear and feel through your whole body as the magnets in the MRI clank back and forth. In my case, for 45 minutes. Even with earplugs I came out of it with my ears ringing and feeling pretty spacey.

Anyway, I went to my neuro-surgeon last week to evaluate the MRI and he thought my back didn't require any treatment. My core is stable, I'm in no pain, etc. So, no situps for another 6 weeks or so and avoid any heavy lifting over my head and I should be good to go.

The other medical issue I've been dealing with is some inflammation in my left arm from some veinous blood clotting. My care team decided to start me on some blood thinners and they have definitely reduced the swelling in my arm. It doesn't hurt which is nice, but no free style swimming until the symptoms go away. It's a slow process - I've been on the blood thinners for a couple of weeks and there's been some progress but the symptoms are not completely gone yet. So irritating but not life threatening so we'll work through it ok.

Today I saw my oncologist and everything looks ok from a lymph node perspective. I've felt some weird tingles in my neck which had me pretty freaked out but the word is that this is being caused by the fact that I'm starting to get sensation back in my neck from the incision done when I had the biopsy in March. So those tingles are in fact a good sign and have nothing to do with tumor growth. Yeah!!!

On the conditioning front, I'm definitely making slow but steady progress. My weight has been pretty stable but I'm trading the jelly roll around my middle for some muscle mass in my legs. I now have a 1-pack on my stomach. Getting to a six pack may not ever happen but will definitely be slowed down by the fact that I can't do any situps for another six weeks to give my back time to heal. On my bike rides, I'm seeing definite improvements in times and how I'm doing relative to other riders. A month ago I would start with folks but basically do a solo ride at a slower pace than everyone. Now I'm almost, sort of keeping up with some of the folks. Of course, my goal is to crush them like a nut athletically but so far I'm not there. But spring 2011? Starting to look like that might be possible - heh, heh, heh. I did a fun (and hard for me) mountain bike ride last Saturday (track info here) and a hard climb up a local road (Flagstaff) on my road bike on Tuesday (here). Both good, hard rides that I probably couldn't have done last month.

On the mental health front, I'm doing pretty well. I continue to have some fears of a cancer recurrence. My oncologist says that given how I've responded to treatment that a relapse would be highly unlikely but not impossible. Last Sunday I had a day of just mild depression - moping around the house, not really feeling like doing anything and just feeling worried about my health. As the months go by and I continue to regain my health I suspect that these days will occur more and more rarely. Just another wicket to go through on the croquet course of cancer/chemo recovery!

So that's it for now. And just a gentle reminder - I know that ALL of you are getting your yearly checkups of all your hardware, yes? You all promised me that you would do this when I posted on this topic earlier this year and I haven't forgotten. So make sure you're staying on top of your health exams, get to the doctor if you're experiencing any weirdness that persists longer than a couple of weeks and let's all be around for a long time to drink beer and ride bikes!

A great wing-woman picture

One other quick post. Caitlyn got this picture in July when I was at my low point in the hospital. I just recently saw it and it really touched me. With this kind of support, how could I not get better! Because my white blood count was low I had to wear a mask when I was walking around the hospital. And the sun glasses - well, they speak for themselves, don't they?

Cancer Tough

And I'm sure glad I'm looking a bit better these days than when this picture was taken. It's funny, but when you look like shit, no one wants to say that. So you always get told you're looking good when  you're sick (at least, that was generally my experience). But when you DO actually look better, people will say "boy, you look so much better than xxx." And then you do the math and say, hmm, if I look good now, and I look ALOT better than I did then, that means that I looked ??? But you said I was looking good then. So that was a lie? But is your comment now that I'm looking good another lie? Or am I REALLY looking good now? Or just compared to then? Ah, screw it. Caring too much about how you look always gets you in trouble anyway, so let's just focus on getting faster on the bike! Yeah, that's the ticket...

All is well, lots to talk about

Howdy, all. Wow, it's been a long time (over a month!) since I've last posted something. Not sure why I fell out of the blogging  habit but here I am, back with an update of stuff that's happened in the last month. This will be kind of stream of consciousness so apologies if things are kind of disjoint.


First big health milestone. Had another PET/CT scan in September and there are no signs of any cancer. Yeah, and double yeah! Here's a pic from the scan:

The good news is that there's no sign of rapid cell growth in my neck or chest. However, there was a nasty spot on the t7 vertebrae in my back (circled in red). That was kind of scary. Metastatic cancer? Nope, turns out that I have a compression fracture in my t7 vertebrae. Not sure how or when it happened. Sometime since July, since it wasn't there in that PET scan. The suspicion is that the prednisone reduced my bone density and I hurt it lifting something heavy. So hey, yeah, I broke a bone in my back. But not to worry, you've got lots of vertebrae. What's a small crack in one of them? I'm going to a neurologist next week to get an expert opinion but I don't think we'll do anything about it.

After the good news on the PET scan, we had a party to celebrate fall and a return to something like a normal life. Lots of people showed up and it was really a special night for me.

Here's a pic of my wing-woman slaving away in the kitchen pre-party:

And a random picture of the kitchen, always the center of any party:

One of my friends kindly consented to demonstrate that even after chemo, you can have more hair than some folks:

And speaking of hair, mine continues to come back; here's a picture of me from fairly recently, showing the new bone dome look:

After the party, a week of work (what? work? Doesn't everyone know that I'm a cancer survivor? Doesn't that entitle me to just hang out and not work? Answer - nope. Sigh).

After the party, I had a PFT (pulmonary function test) and a visit with my pulmonologist. My lungs are doing really well from a functional perspective - I'm back to having about 120% of the projected lung function for someone my size. I still cough a bit more than I think is usual and some days the lungs don't feel quite perfect. The PET scan did show some residual signs of the bleo poisoning so they're not completely better yet (or they weren't in mid-September when I had the PFT). The oncologist is pretty confident that that stuff will eventually go away. So good news on the lung front...

Then, a most awesome week on Kauai with Susan. Way too much to talk about in one post, but the quick summary: awesome, fantastic, great weather, great scenery, great company, a most delicious 7 days in paradise. Just to get a quick sense of the week. A picture of us enjoying a nice dinner at a restaurant near our condo:

and one of the dolphins showing off on our zodiac tour of the Na' Pali coast:

and a picture of the ocean from the beach in front of our condo:

After that trip, we've settled back into the work grind. We've  had some beautiful fall weather here in Colorado these last two weeks so we've both gotten in some nice bike rides.

I would say that the only significant medical problem I'm still battling is some thrombosis (blood clotting) in my left arm. It's gotten bad enough that I've had some swelling in my whole arm and have started some treatment on blood thinners  (fragmin and warfarin) to keep my arm from getting too messed up while my body works on removing the clots. It's not painful but it's kind of a pain in the ass. I'll probably have to go into the doctor every week for the next three months to get my clotting factor checked to make sure it's not too high or too low. Luckily the cancer center is only about 5 minutes from work so I should be able to do this without any significant impact on my daily schedule. But I sure was looking forward to getting all the medical stuff in my rear view mirror and not having that be such a significant part of my daily routine. Oh, well. You do what you have to and just keep moving forward, I guess!

On the fitness front, the trip to Hawaii seemed to really help. I came back feeling refreshed and started putting out significantly better numbers in my running and biking workouts. I've still got a ways to go in terms of fitness but I can definitely see progress which is super encouraging.

On the mental  health front, I think we're both doing well and again, the Hawaii trip was very therapeutic. I do have some moments where I worry about the future - will the cancer come back, how will it be to go through another round of chemo, will my body ever be like it was before. So those dark thoughts are definitely around. But in general I'd say that life is looking pretty good. I've got love in my life, great family and friends, my health continues to improve, I get to ride my bike and I get to write a bit of software now and again. Not too shabby a lifestyle!

Well, that's the quick update. I suspect the frequency of posts going forward will continue to be pretty spotty since our lives are starting to be pretty mundane - which is a good thing!

Thx again to all of you for your support on this journey. It's been a huge boost to my physical and mental health to have so much support. You guys rock!