Monday, August 30, 2010

Monday check-up; all systems in the green

Just a quick post today to let you know that I went to the cancer center for a quick check-up today. My blood work is rebounding from the last chemo session nicely and everything looks good. Temp, bp, O2 sat, weight all good. I'm moving down to 20 mg/day of prednisone this week. My lungs are clear and my pulmonary function continues to feel more normal.

We talked a bit about the problem I had with my left arm swimming. This may be from the phlebitis in my vein or there may be some damage in the vein from the port. In either case, range of motion exercises (like swimming) will help. The nurse practitioner also suggested I look into acupuncture to help stimulate blood flow and circulation in my left arm and shoulder. I'm not sure I'll pursue this - I'm sure it would help but at this point I'm trying to reduce the amount of energy it takes just to keep my body functioning at a reasonable level. Adding another care giver to the mix is kind of going in the wrong direction. But we'll see - if the swimming alone doesn't help resolve this I may look into acupuncture.

The next big milestone is a CT/PET scan in early October. At that time, I should be off the prednisone and fairly well recovered from the chemo. With those stabilizing factors in place, the scan should show a nice, quiet lymphatic system with no abnormal growth going on.

Oh, yeah, one more plug - we've having a big party on September 25th to celebrate what we think will be a Fabulous Fall for us. So if you're in the Boulder area that weekend, please stop by! The evite link describing the party is here.

Ok, that's it for now. Have a good week!

Sunday, August 29, 2010

Anyone interested in drinking wine and fighting cancer?

A friend of mine let me know about this event and it sounded like fun so I thought I would share. Susan and I are going and hope to see you at the   Taste of Victory II which is being organized by Livestrong Colorado. It's coming up on September 11th. 

 $25 per head (pre-paid, $35 at the door) gets you inside and will get you 4 tastes (or one bottle of wine), and you'll be supporting the mission of Livestrong. Of course, it's a silent auction so you can drink a lot and then spend a lot more money for a good cause!

The event will take place at the Bonacquisti Winery.  You can purchase tickets by clicking the link at the bottom of this page.

Hope to see you there. I will be the guy with a boatload of new black hair :)


ps. Thx Josh for the initial posting on your blog that I shamelessly stole from!

Saturday, August 28, 2010

Bed Hair!

Many people bemoan bed hair - you know, you get up in the morning, look in the mirror and your hair is all nutsy. This is usually solved with a shower although a baseball cap is a favorite weekend solution to this critical issue in early morning body management. Many folks wish that there hair would be behave and not get all crazy when they sleep on it all night.


When you haven't had much hair for several months, and growing hair is a sign of improving health, bed hair is suddenly a mark of glory, of excellence, of - well - of having hair.

And yes, this morning, for the first time in 6 months, I have bed hair! Well, just a tiny bit of some hair wings on one side of my noggin, like so:

Oh, yes. See those little, tiny tuffs sticking out from above my ear. That's bed hair, baby! Yeah!

Well, just wanted to share. Probably going to need to get a big haircut today to keep this rangy mop under control :)

Friday, August 27, 2010

A Good Week!

As Susan and I sit in our study and catch up after the week I'm happy to report that this has been a really great week. After the tough Monday with Roy's passing, we managed to turn to look at all the positive things that are going on and have embraced the good stuff that's come our way this week.

Here are some of the highlights of the week:
  • Showering! Yes, you all probably take this for granted but after getting the PICC line out, showering has emerged as a really nice, simple pleasure in life. Being able to just jump under the warm water, soap up and not be worried about getting Pablo wet has really been great.
  • I played soccer Wed. night! My men's team was desperate for warm bodies so I threw on a jersey and did my best imitation of a turn style - turning around, watching the play go by me. I was just horrible. The prednisone has atrophied my legs quite a bit (especially my hamstrings and calves ) so I literally can't sprint more than about 10 yards without feeling like I'm going to fall over. But despite how unbelievably unfit I am, it was just, pure, unadulterated joy to be back on the pitch. All the guys were really supportive and it was just a wonderful moment in my recovery. I suspect that in a month or so I might be able to actually play a little bit. 
  • More good bike rides. With the removal of the max heart rate restriction I've been able to put the hammer down some more on the bike which has been great. Painful, hard, frustrating, trying, but great. I managed to get up Antelope at Hall Ranch and up and around the lollypop. I went on a weekday morning and it was just a beautiful morning to be out on the trail. 
  • Swimming! Got in the pool today for the first time in about 22 weeks. Felt awesome! I have a bit of phlebitis in a vein in my left arm from all the blood work that's been done in that arm so that caused me some issues while doing freestyle. But I think the swimming will really help the veinous blood flow in my arm and that will help the phlebitis get resolved. 
  • More home improvement! Did a fun project to upgrade our master shower a bit. Now this might look like a Decepticon from the Transformers movie:

    But it's really the valve assembly for the shower (note the awesome solder joints :) . And here is the sheetrock work to put the wall back together after the Decepticon was installed:

    And here is the finished product:

    Yeah, I admit it's pretty boring but when you leave an engineer at home for a few weeks these types of projects come out of the woodwork. And the previous fixture was pretty ratty so definitely an upgrade.
  • My voice is back! The singing, exercise and general healing of the last few weeks has really helped my voice. This was really one of the issues I wanted to get resolved before I went back to work. It's hard to be a consultant when you can't talk without coughing or your voice is so weak people are afraid you're going to pass out just from trying to say something. So this is a big milestone. 
  • Along with the all the specific things, in general my energy level is higher and I'm starting to believe that I'm getting better. Knowing that at least for the next few months (and hopefully for years and years to come!) I'm just getting healthier and healthier is really an emotional boost.

    So a really, really good week. Usually my low day in the chemo cycle is yesterday so I'm really excited that I feel pretty good today, which is hopefully an indicator of more good recovery to come in the next few weeks.

    Enjoy your weekend and know that I will be getting better and enjoying life!

    Monday, August 23, 2010

    Roy is gone...

    Today at the cancer center we learned that one of our cancer peeps passed away last week. I blogged about Roy in this post in May. The last time I saw him was about 6 weeks ago and it seemed like he was getting better. He had colo-rectal cancer and had lost a ton of weight. But it looked like he was putting a bit back on and his mood was good. He was an interesting guy - had worked as a software developer at NCAR, rock climber, your typical smart, outdoorsy, Boulder guy in his mid 60s. I don't know the details of the end of his illness but obviously he took a turn for the worse and didn't make it...

    The news was pretty devastating to me. You know intellectually that some of the people you see there aren't going to live long. And I'd previously had some interactions with Rose who looks to be on the losing end of a fight with stage 4 metastatic breast cancer. But to get to know someone and then have them just not be there - it's pretty much an emotional sucker punch to the stomach. So shit. This whole disease thing is just a rock-your-world, i-hate-it-that-this-exists-in-the-world thing. And it reminded me of the Dave Matthews song "Funny The Way It Is." Here Susan and I (and our whole family and set of friends) are celebrating the end of my chemo and the road back to health while at the same time Roy's dead and his family is trying to figure out how to move forward in their lives. WTF doesn't begin to express my feelings about this.

    I don't know Roy's last name but I will miss him. I will think about him when I'm up in the mountains west of Boulder where he lived or when I taunt some junior developer because they don't know what great fun cron, awk, sed and perl can be (Unix utilities, if you don't know, don't ask..)

    So it's been a pretty intense day. On the one hand - done chemo, all green lights for improving health. And oh yeah, Roy is dead - gone, no more chats about doing development on Sun-2 workstations, hiking and biking in the mountains, the joys of servicing your PICC line. And, with those two sets of feedback, you're free to go back into the world and do what you do. Whoa...

    As I've said before, in the land of chemo and cancer, boring is usually better than exciting. Today was a bit of an exception to that rule - exciting, really good and really bad, all mixed together.


    Today I finished my 12th and last infusion of A (sometimes B) VD chemotherapy. Everything went very smoothly and was uneventful - just the way we like it! I did ride my bike to chemo - the myGarmin post of that ride is here if you're interested.

    And, in keeping with my "stick it to the cancer man" attitude of late,  here is a picture of me getting my last infusion:

    At the end of the infusion, the nurse took out my PICC line. Pablo did a great, great job - but I dumped him into the trash like the lame-ass, picc-bitch that he is! (Sorry, still feeling a bit of attitude about the whole morning). It was great to watch - they pull this small diameter (3-4 mm?), 12-15 inch line out of your arm - and it just keeps sliding out and you think - crazy! That thing was in the top part of my heart. No pain coming out and they just put a little pressure bandage on the wound. So for the first time in 24+ weeks I have no weird hardware in me. Bitchin!!!

    Had a couple of good moments with the oncologist as well:
    • I had given him a paper printout of my Edge 705 recorded workouts. Turns out he has a Garmin GPS trainer but only one of the 400 series. I enjoyed taunting him with my superior, 705 Edge technology. Definitely won that man-gear competition hands down!
    • The doc gave me the green light for max physical exertion exercise. He felt that I couldn't do anything in a workout that would damage my pulmonary or cardiac function. So as my strength comes back I will add more intensity to my workouts. Yeah! (I know that some people wouldn't see this as a positive development so to each his own, I guess).
    • After I manned him up about his dumb-ass Garmin GPS, he came back at me hard and noted that I had gained some weight (due to the prednisone) and that I had some dents in my quads (again from the prednisone taking away muscle mass). So he told me to lose the weight and ride my bike more to get my quads back. Talk about tough man-love! He was definitely pushing all my buttons and it was fun to get some taunting. I believe that when your care giver taunts you it's a sign that things are going pretty well in your treatment...
    • We talked about how to heal yourself after chemo. Can you do anything to cleanse your body of the chemo, etc? Apparently the chemo doesn't stay in your body that long. By about day 5 of the cycle, over 95% of the drugs are out of your body. The recovery time is usually related to healing toxic effects of the chemo - nerve damage, depressed blood cell counts, etc. So his feedback was very reasonable but kind of boring. The way to get healthy after chemo is to - yup - live a healthy life. Eat good foods, exercise, get lots of sleep, stay hydrated. Just the standard stuff your mom might tell you to do. 
    So this is basically all fantastic news and just what we wanted to hear. I am in Complete Remission (CR for short). I've got another few days of feeling mildly crappy from the last dose of chemo. But from this day forward I should be getting better and better. That's a pretty fantastic bit of news to get at this point in the journey.

    So what am I feeling? Happy, relieved, impatient, thankful, scared, anxious. Pretty much doing the "spin the compass" set of emotions. I suspect it will take a couple of days to process the milestone and get my head around it. It's been a journey for sure and the last month has been particularly intense with the lung problems I've had and the hospital stay.

    So that's it for now! This afternoon is the first afternoon of my journey to wellness post chemo. That feels pretty awesome. Knowing that I will just start feeling better and better over the next month is a great thing to look forward to.

    Sunday, August 22, 2010

    Countdown to ONE day - can we sleep tonight? (by Susan)

    I can't believe it - we have been counting down the days from 168 days/24 weeks/12 chemo sessions/ 6 "cycles" - during George's cancer treatements.  We are now down to 1 day left.  George gets his last infusion tomorrow and we are both pretty excited about it. We are wondering whether either of us will be able to sleep tonight.   Only one more night of flushing the PICC line - only one more shower with the Dry Pro on George's arm to protect the PICC line - only one more day of George sitting in the big chair in the Infusion Room at the Rocky Mountain Cancer Center while I run around booking appointments, getting us drinks and magazines, and getting coffee cake from the Panera bread supply that they always have on Mondays. 

    Treating George's cancer has been the major focus of our lives for the past six months.  We have had to put vacations on hold (goodbye condo at Crested Butte with all our kids in one place for once), take it one day at a time, and try to deal with one new health crisis after another.  I, for one, have been physically and emotionally exhausted at various points, and I'm sure that's nothing compared to what George has felt.    We have both been afraid to project out what our lives are going to look like in the future.

    Last week we took a big step and booked a condo and made airline reservations for a vacation in Kauai, Hawaii, for October.  We wanted something to look forward to, a trip where we could do whatever the hell we wanted to do and totally relax by the ocean.  We feel like this is going to help the process of de-toxing from all the drugs that George has had in the last six months and also to help heal our psyches.  I felt like it was a major statement - to get back on the horse and plan something FUN!  However, we did get trip insurance, just in case!

    Today George and I met Josh, George's  blog buddy in the war against Hogdkins.  George found Josh's blog on-lineat the very beginning of this journey.  Josh lives in our area and was also diagnosed with Stage III Hodgkins, about 8 or 9 weeks ahead of George.  Josh likes to mountain bike, which was another thing they had in common.   They have been trading e-mails and supporting each other through this whole thing.  I think it helped George to take a look at what Josh was going through and see what things would be like in 8 weeks.   Today we finally got to meet Josh and Sarah, his wife.  We went for a road bike ride together and then had lunch.  We didn't stop talking the whole time - just trading our war stories, both patient and caregiver.  It really helps to talk to another person who is going through what you are going through, because the doctors and nurses, even though they are great and well-intentioned, don't REALLY know what it feels like.  

    Josh and Sarah have started to become involved with the Lance Armstrong's Livestrong organization, and George and I are hoping to do the same.   One thing I really like about the Livestrong message is the hope it gives to cancer patients that you move on to find the "new normal" and have continuing healthy lives.

    George's hair has already started growing back - the nurse told us that this sometimes happens before people are done with chemo.  His skin tone is looking better and his lungs are getting much better every day. 

    We will see what our "new normal" turns out to be.  I, for one, am ready to have a fall filled with fun, laughter, music, and, most of all, love - between George and me and also with all of our family and friends who have supported us through this tough year.

    Monday, August 9, 2010

    Cycle 6, Day 1 - Infusion #11

    Monday morning and we're back at the cancer center for another infusion. We got a nice early start this morning - was in getting blood work by 7:50 so should be completely done by 11 or 11:30.

    And the ubiquitous picture of me signaling infusion #11. You can see that I'm doing my bit to market Big Al's bike shop from CB. I'm also definitely getting back some noggin hair. Good to see the black dome start to come back!

    Good news is that there are no surprises. My blood work is good (the prednisone has boosted by WBCs and ANC #s), bp good, O2 sat good, no temp, heart rate ok, etc. So cleared for another infusion. Today and 2 weeks from today and them I'm done with chemo - hooray!!! Hopefully another uneventful 14 days, one more dose of the magic sauce and I can then really start to focus on recovery.

    Today for the first time we started talking about post-chemo recovery. The cancer center has some pointers to folks that can help with nutrition, physiology, exercise, etc. The folks here are telling us it will be a good six months before I've really got all this stuff out of my system and I can determine what the new me is like in terms of what my body can do.

    Today we also checked my lung function (clear chest sounds, good O2 sat) so we're reducing my prednisone dose to 50 mg/day. The plan is to reduce my dose by 10 mg/week. This will give my lungs a chance to recover slowly and slowly wean me from the prednisone.

    The one small negative step I've taken over the last few days is that my voice has gotten pretty froggy. I wake up in the morning and can't really talk - nothing comes out and my larynx feels like it's coated in gunk. To combat this, I've started doing some singing exercises in the morning. I do scales on the guitar and sing along. Luckily I do this in the basement or garage so no other human or feline is exposed to this torture :) I do find that the singing helps my lung function - it's hard to begin with but over 15-20 minutes my lung volume comes up and my larynx gets clearer. Hot tea and honey also helps. The nurse practitioner I saw today indicated that the chemo may be causing a bit of neuropathy in my larynx but this should resolve itself after the chemo is completed.

    So, my current daily schedule looks something like this:

    - I usually sleep pretty well from 10 pm to 4 am or so. Some nights I can get back to sleep and get another couple of hours from 4-6. Other nights I end up thrashing around a bit. I feel like I'm getting enough sleep but it would be nice to not have that early morning insomnia to deal with.
    - Singing exercises for 20-30 minutes. Scales with the guitar and solo. Toning, work on getting big, clear notes out, focus on lung volume and larynx function.
    - Breakfast, prep for morning workout
    - Morning workout, primarily road or mountain bike rides. I did one run and it was crazy hard - had to mix run and walk to keep my heart rate under 150. I'll do more runs here in the next couple of weeks but I do enjoy the bike rides more.
    - Post work nap, shower, then lunch
    - Afternoon home improvement projects, or programming projects
    - Dinner with Susan, post dinner reading, TV, hanging out.

    So that's it from the infusion center. Just finished the Adriamycin and now getting some Vinblastine.

    Oh, yeah. One more positive note. Yesterday I went up into the mountains for the first time since my time in the hospital. I've been wondering if my lung function is good enough to be able to do any sort of exercise at altitude. Yesterday we did a moderate hike at 10-11,000 feet and I did OK. Here's a picture of the unbelievably cool Middle Boulder Creek. Man, we're so lucky to have this type of outdoors so close to us here on the Front Range! And I was super happy that I can still push my weak ass up the trail enough to see this kind of scenery.

    Definitely was working hard and couldn't keep up with Susan going uphill but I did the hike without any significant lung pain. Here's a little screen snap of my workout history from the hike. myGarmin info for that hike is here.

    Tuesday, August 3, 2010

    Quick update, and pointer to myGarmin training page

    I've continued this week to do some nice rehab rides, both road and mountain bike. Every day I seem to get a little more pulmonary function back which is really encouraging. Rather than continually post individual items here, I thought it would be more efficient to just point you at the myGarmin web site where I'll post results. My workout page on myGarmin is here.

    Back when I was still thinking about doing the Copper Triangle and after I'd had the cardiac stress test, my GP and I agreed that I should  target an upper heart rate of 150 for that long a ride. I've been using that as an upper bound for these rehab rides and backing off as my heart rate approaches 150. It's definitely been a good limiting consideration - I still feel like I have some pulmonary, strength and cardiac capacity left as I bump up against the 150 limit. I think I'll keep at 150 for this week as a throttle on the intensity of the workouts. I am going to talk to the oncolology team about this. I'm wondering when and if I should up that limit to gradually introduce some more stress into the workouts in the hope that it will stimulate more pulmonary function.

    Another thought I've had is that I'd really like to get an exercise physiologist on the team. The oncology and pulmonary folks are great specialists but neither of them are all that expert at evaluating how bodies respond during exercise. It seems like our team could use some more expertise in that specialty. I'm not sure how do that within the confines of what insurance will pay for and I'm  not so fired up for this type of advice that I'd pay out of pocket dollars to get it. But something I'm thinking about...