Monday, May 31, 2010

1/2 way there! 84 days down, 84 to go. Photo update on my chest, retaining wall update and the rhythms of chemo

Today is a big day. 84 days of chemo done, 84 to go! Yeah, 84 days may sound like a long time to go, but when you're starting at 168 days, 84 seems pretty good! So assuming everything goes according to plan, I'm over the half way mark today. So all downhill from here!

Tomorrow morning I get my PICC line and then my sixth (of 12) infusions and I will be halfway done with treatments as well. The last few days have been pretty nice. My chest is healing up pretty nicely from where Pete once hung out:

It's been nice to have no hardware in my body for a few days! I did notice Pete a bit when I laid on my stomach in bed and Susan was always a bit tentative about hugging me on my left side for fear of hurting Pete. I wanted to get a swim in this weekend since I don't think I'll swim with the PICC line in. But it's been a busy weekend (all fun stuff!) so I didn't get a chance to swim.

I took Friday off and got some good work done on the retaining wall. Saturday we got a good 28 mile road ride in around Boulder (Susan and I), then yesterday and today some mad work to get the retaining wall done. It's still got a bit of fine tuning to do but basically we're in business:

And we had a good project manager to keep us on track:
We had great fun going to The Tree Farm in south Longmont (a mile west of 287 on CO 52) and picking out the plants. Highly recommended if you've never been there before. Lots of variety and very helpful staff. I don't think the prices are super great but with perennials you'd really like to have the plants actually thrive so we don't usually look for the absolute best bargain on plants.

Not much more to report on. I do seem to be getting a bit of the Stockholm Syndrome wrt to chemo. It's getting harder and harder to remember what life was like before chemo. I've gotten used to the 14 day rhythm. Here's basically what my two weeks look like now:

  • Monday morning - get chemo.  As others on the web have noted (see this post from my chemo buddy Josh), the DTIC can make you feel a bit funky but it's never been too horrible for me. Ok during the afternoon. Sleep Monday night is usually a bit difficult. Tend to have heartburn and acid reflux but so far Tums have been enough to manage it. I did one bad thing one Monday which was to go to Chipotle after getting chemo. I used to really like Chipotle but something disagreed with me that Monday afternoon following chemo and now I literally don't want to even go into a Chipotle and the thought of eating their food makes me queasy. I sound just like a pregnant woman, eh? 
  • Tues/Wed - ok (probably in the high 70s on the 0-100 scale). Feel a bit off but nothing too bad. GI track starts to slow down.
  • Thurs/Fri, or sometimes Wed/Thurs - my worse two days. GI track slows WAY down, spend the majority of the day feeling bloated and relatively unhappy. Some nausea, some wooziness. Working out definitely helps with all of these symptoms but it's hard to get going when you're not feeling that great. The hardest part of feeling bad these days is doing individual work in the office. When I'm in meetings it's easy to forget how I feel. But when I'm stationary, sitting in my office, it's hard to avoid the nagging feeling that you Don't Feel So Good.
  • Sat/Sunday - turn the corner days. GI track starts to get straightened out, nausea goes away, start to feel pretty normal. Sometime I get a little sag on these days and have to nap a bit. I would probably feel this way during week one on other days but during the week I'm at work (which is pretty sedentary) and on the weekends I'm more active and tend to get a little run down by the end of the day.
  • Week Two - Monday-Sunday. Generally increasing levels of feeling good. GI gets back to normal, no fogginess, energy level higher, workouts are easier and more fun.

I'm really looking forward to getting to the end of a two week period and not having to get back on the infusion band wagon! Another 12 weeks and I'll be there.

I'll post tomorrow with some more Fun With Infusion pictures of my new PICC line.

Onward to August 23rd! (My last day of chemo given the current schedule).

Monday, May 24, 2010

Retaining wall fun

This weekend Susan was out and about on a girls' weekend so I had the run of the domestic estate! So I decided we needed to do another home engineering project. I enlisted Kyle and one of his friends to do the heavy lifting (trying avoid ripping the stitches out of my chest) and we started work on a retaining wall. It was good fun to do something productive and be outside in the gorgeous weather. Of course, since I didn't lift much of the 3,000 lbs of rock that had to be moved my fun factor was probably higher than Mark and Kyle's! We made a pretty good dent in the project this weekend and will probably finish next weekend. I'll post pictures of the final product. Here are a couple of pics of the project so far:
  •  Another nasty side effect of Bleomycin is that it makes your skin more sensitive to the sun. So I dosed up with some UV 50 sun block (greasy but otherwise not too horrible), got the hat on and a nice wicking, light weight long sleeved shirt and I was reading to face the elements:

  •  I've bought this laser leveler and I've been desperately trying to figure out a use for it. Initially I thought it would be a great way of leveling out the initial trench - twine and a string level are so old school! But of course the damn laser isn't strong enough to be seen in daylight. I got a picture of the laser at dusk. The laser is on the right and the little yellow bands on the sticks are the level points. But to level the trench, we used - you guessed it - twine and a $4 string level. I won't document how much the useless laser level cost to avoid any more domestic angst on that front :)

  • The first stone is in place and level!

  • On Saturday, we had to refuel the 6'-4" engine that is Kyle's body. Here's what he ordered from the Lazy Dog. Obviously his participation in the vegan program is still a bit spotty :)

  • One problem that turned out to be much more time consuming than we thought was that we picked some field stone that's not completely level. I think it will look great when we're done but if you don't have level surfaces of blocks with the same height, you find yourself in the business of being a stone sculptor. That part was pretty fun - scoring and chiseling a 4" stone gave us the chance to buy more tools (the real, hidden motivation for any engineering project) and we also got to do some interesting team building. When you're holding the chisel and your family member is about to hit it with a a 10lb sledge hammer you find yourself wondering if there are any unresolved issues between you that you should be talking about before the down strike of that sledge. Luckily all fingers, toes and such remain unscathed through the stone sculpting exercises. As Kyle said, building the wall is a bit of a real world Tetris game. And when each cube is about 45 lbs and you move 3,000 lbs in an afternoon, there's some part of your day that will probably look like this: 

  • We've prototyped the wall just to get a sense for what blocks need work. The final product will be a tighter stacking than this but here's a snapshot of the prototype wall as of today:

Many people would consider this to be a strange thing to do with a free weekend but if you're thinking that, you're missing the engineering bit! Or maybe you just have a richer social life than I do :)

Neupogen and WBCs - so far, so good

In addition to getting Pete out last week, the big going-on was that I got five shots of Neupogen. This is a drug that stimulates your bone marrow to make more white blood cells. There's some anecdotal evidence in the medical literature that Neupogen given with Bleomycin can cause lung toxicity (translate this to be permanent scaring of your lung tissue). Consequently, lots of oncologists are hesitant to use it in conjunction with ABVD. We've been dancing around this issue for the last 2 months. The issue really started after my bone biopsy, where the report indicated that I didn't have  a very high density of cells in my bone marrow that make WBCs. Start from a not-so-much level and then add 5 doses doses of ABVD and in my case, you end up with some very low white blood cell counts. Using one formula (ANC #) a value < 1680 is not normal, < 1000 means you're at risk of infection, < 500 means you're at very serious risk of infection. My ANC # a week ago was 300. Uggh. Another big piece of the overall Hodgkins success mantra is "full dose of ABVD, on time." And if you get an infection, that's at risk. And if you get an infection in your chest, you can be really in trouble. So out with Pete and we decided to take the risk of some lung scarring to keep me dosing on time and at full strength.

So with all that preamble, the results of the week were pretty good. Compare my blood work from today vs. a week ago:
  • ANC # from 300->1800 (6 x improvement and back into normal range, which is 1680 < x < 6160)
  • WBC from 1420->3080 (> 2 x improvement, much closer to the low end of normal which is 3830)
This should help me avoid any infections and increase my chances of staying on time, on dose for the last 7 treatments.

The downside of this added protocol was that it made me feel slightly blechy. When your bone marrow is making that many new WBCs, you can get some side effects. One of them is bone pain, which can be pretty uncomfortable but I didn't experience that. What I did experience was some nightly rise in body temperature. My temp has been running around 97.5 in the morning and I've been taking it pretty religiously because a spike in body temperature is a strong indicator that you're getting an infection. A couple of nights last week I was running around 99.5 before going to bed. In both cases I took some Ibuprofen and my temp was down in the morning. So nothing really bad but just another of the set of minor yuckys (yes, that is a word - at least in my vocabulary!) to deal with.

I'm hopeful that this dose will keep me in a good place in terms of blood chemistry for the rest of my treatments. We'll see!

Wednesday, May 19, 2010

Peter the Power Port Thug is out!

Warning - more gross skin pictures in this post! So if this sort of stuff bothers you, close the page - fast! Otherwise, scroll down...

Ok, you're still with me. Here we go!

Today I got the port out. Here's what it looked like yesterday while still in my chest:

The black dot is not a scab - it's part of the port that's erupted through my skin. Think Sigourney Weaver and the Alien movies and you get a small sense of what this looks like. Although it's not infected and I  haven't been running a temperature, the oncologist was pretty convinced that this was a risk that we no longer could tolerate. So out it came!

The procedure for removing it is pretty straightforward. Numb things up locally, dig around for a bit with some typical surgical tools (the thoracic surgeon had me turn my head the other way so I can't report on what tools he used ) but there was a fair amount of grinding, grunting and pulling while he got it to come off my pectoral muscle and out through the previous incision.

Here's a picture of my chest post removal:

I'm sure that will heal up nicely with no scaring. Right...

And here's the bad boy himself, safely ensconced in a biohazard bag.

I was a bit bummed leaving the surgeon's office. I've spent the last few months thinking about how cool it will be to get the port out as this would indicate I was done with chemo. But that's not the way it turned out. I'm only about 45% done. So I get 13 days without any funky hardware in my body and then I get the PICC line. It will be a bit of a PITA (Pain In The Ass). Needs to be flushed every day so another job for my awesome wing-woman to take on. I'm not sure how many activities I can do with my upper body with a PICC line installed but the chemo nurses tell me that they have some very active patients with PICC lines so I'm hopeful I'll still able to do most things.

Monday, May 17, 2010

Dancing with NED - No Evidence of Disease

Today we got the awesome news that I'm officially NED - No Evidence of Disease. We got to see an axial view of the PET scan that I didn't know how to interpret (slices of my body from the head down). We looked at the March and May scans and it was really obvious how much the chemo has eliminated all the hot spots that indicate metabolic activity indicative of cancer growth.

So, in a word - hurray! Just the news that we were hoping to get. So this means (probably), no radiation and I'll be done with this whole thing in another 98 days.

But the news wasn't completely positive... We're not done with this journey yet - I have 7 more treatments after today over the next 14 weeks and my blood work isn't great - white blood cell counts continue to go down so I'm going to get some Neulasta to stimulate white blood cell growth. This is a step we've been trying to avoid because there's some anecdotal evidence that an interaction bewteen Neulasta and Bleomycin can cause some lung toxicity. So I'm getting a smaller dose of Neulasta than normal but it will hopefully get my white blood cell count to improve.

Also, as I noted in a previous post, my port looks to be a problem so we're taking it out. I'll get a PICC line which requires more care as the port part of the setup is outside your body. I asked the nurse how many port fails and she said it was a pretty small number.Probably < 3%? So I'm kind of unlucky to have this problem and combined with my low white blood cell count it's concerning. So, we'll change course a bit, get the PICC line and see how that works. The good news is that I'm getting the full dose of meds today, so that's the important thing to concentrate on.

So I have no evidence of disease which is awesome!

Life imitating art - my port is erupting through my skin

A bit of bad news this morning. Peter the Power Port is trying really hard to come out through my skin. The oncologist is worried that I will get an infection through the port. That's A Bad Thing - having an infection in your chest when your WBCs are on vacation can lead to lots of problems.

So, I'm getting the port out on Wed. Then heal up for a week and then get a PICC line. This is a less optimal solution for getting infusions - the line goes into your upper arm but the port itself is outside your skin. So you have to wrap it before taking a shower, can't do much with your upper arm, etc. Which sucks. But better than getting an infections, getting really sick and having my chemo schedule disrupted. So that's what we're going to do. The good news is that with the port out the minor swelling in my left arm will go away.

Friday, May 14, 2010

definite progress on the PET/CT scan front

Ok, I've found a scan that shows great progress. This is a slightly different imaging model than I had described earlier. In this scan, black areas show high metabolic activity. The big black blobs are (from the top down), my brain, spleen, kidneys and bladder. Not sure why the brain shows up as black but the other organs  are all involved in turning the sugar water into pee so it's normal that they show up on the scan. So in this scan, the left picture is from march - note the black spots in the center of my chest and going up into the left side of my neck (right side on these pictures). That's the bad stuff. On the right is the scan from this afternoon. Notice the absence of black blobs in the center of my chest and neck. Lots of caveats - I'm a rank amateur at interpreting this stuff. But man, it sure looks like we're headed in the right direction! I am one happy blogger as I type this. We'll get an official read on Monday and there are a number of image sets to look at. But I'm sure happy about the way this one looks. Boo-yah!!!

the world's itchiest forehead

Ok, PET/CT scan is done. I got to keep my arms by my sides and that it made it a LOT more relaxing. I think I actually slept through part of it. Here's a picture of the scanner:

I woke up at one point - why?  Because I had a REALLY itching forehead. I wondered why I couldn't move my hands. Huh? What's up with that? Hmm, my hands are under my ass. Why is that? Oh, yeah. I'm in the PET/CT scan machine. Right. And I shouldn't move ANYTHING or it will screw up the scan. So of course, my forehead is itchy. Ooh, that's going away. But now the right side of my nose is itching. Ahh! The tricks your body can play on you.

So, 27 1/2 minutes of diagnosing and I'm a free man. For you McKesson-ites, you'll be happy to know that your brand was well represented in the imaging room:

And  now, of course, the big question. What did the scan show? The technician doesn't tell you much but she did say "you'll like this one better than the last one!". So that's encouraging. The scan is setup as about 3500 images and there's a little viewer on the DVD that can animate the images. So it's takes a bit of time to find one that's related to the few I looked at in March that showed the tumors well. But I did just run one of the animations and things look  really promising! No big white spots in my neck or along the center of my chest. (Remember, in this imaging, white is bad, and the brighter the white, the worse, aka more metabolic activity). Anyway, I'll scrutinize this a bit more and post some more insights. Of course, I really have no idea what I'm looking at and I'll have to wait until Monday for the formal report. Arghhh! That will be hard to wait for. But we're definitely making progress along the road and that feels great.

live blog - getting a PET/CAT scan

Today, Blog Readers, I'm over at the cancer center getting another PET/CT scan to see how the ABVD is doing on killing all my little rascal cancer cells. The tumors in my neck have been really reducing in size so we're all hopeful that this scan will show very little metabolic activity. If things go well, it will probably mean I'll be done with treatment in about 14 weeks. If it still looks like there's some activity there may be some value in getting radiation after the chemo completes. So fingers and toes are all double and triple crossed that things have been going well inside of me!

The first step in the process is to fast for six hours. Normally I'm not all that hungry for lunch but today, because I knew I couldn't eat at lunch, I was just famished. The amazing monkey mind at work! I got out for a little walk at lunch but still was having trouble not thinking about not eating. Sigh..

Ok, next step. Get a shot of radioactive suger and drink some chalky flavored barium. Then, wait for 45 minutes to have the sugar flow around my system. It will end up in my kidneys and spleen but shouldn't be showing up in my lymph nodes. So we're looking for a scan that doesn't show a bunch of white spots in my chest or neck. So that's where we are now - waiting for the sugar to flow around my internals.

After that, we have a 28 minute session with the PET/CT scan. For my size body, it takes  7 different slices at 4 minutes/slice = 28 minutes to get a good picture of me and my insides from knees to shoulder.

The last time we did the scan they had me put my hands over my head to get a good look at the lymph nodes in my armpits. That was actually the most uncomfortable part of the process since the annular hole in the middle of the machine you lie in wasn't quite wide enough for me to comfortably put my hands over my head. So my left shoulder really started to hurt and it was quite a mental discipline to lie there for 28 minutes without moving while my shoulder just started hurting more and more. Since they didn't find anything in my armpits during the last scan, I may be able to do this one with my arms down by my sides which would definitely be more comfortable. I've been stretching my shoulders so that I should have an easier time of it today if I do need to have my arms up over my head.

Ok, I'll update after I've completed the scan. Wish me luck!

Wednesday, May 12, 2010

What I Did for Love (by Susan)

Last week George got hit hard by a reality check.  He was out mountain biking with his Bikes-or-Beers group on a somewhat technical trail.  They all got up to the top of the loop after a steep climb, and then were heading downhill at a breakneck pace when the guy in front of George caught a pedal on a rock and took a spectacular fall.  According to eyewitnesses, Jay came out of his cleats and landed on his shoulder, while his bike went flying eight feet into the air.   They all had been egging each other on and were not exactly biking in the conservative Grandma fashion that George promised me he would stick to.  I felt really bad for Jay - he will be out the rest of the season and will require shoulder surgery.  I also realized how easily that could have been George, and what a world of trouble he'd be in if he had that kind of injury.  First of all, his hemoglobin and white blood cell counts are both low at this point, and so his healing ability has really slowed down.  Second of all, the injury could interfere with his ability to get his chemo at full dosages on schedule.  Everything we have been told by the doctor is that you need to get "full dosages, on time" to have the best success rate at getting rid of the cancer for good.  Having an injury that requires surgery could completely jeopardize the whole program that could ultimately put his life in danger. 

I got so panicked by the whole thing that I read George the riot act.  I told him, "I realize that you're a handful, but you're MY handful, and I want you in my life for a long time to come!"  I think he finally got it, because he promised not to go mountain biking with the guys any more this summer.  And the thing is, I realized what he was giving up. Even at my pokey pace, I still get a thrill and an adrenaline rush from mountain biking that just isn't there with road biking.  It becomes the thing you look forward to most each week, the thing that makes you forget about work, problems and all of the "shoulds" that we have in our lives.  As George says, "life becomes very simple" - you are just focused on making the next turn, avoiding the big rocks,  and staying on your bike.  And at its finest moments it feels like flying.   

So, I knew how hard it was for George to agree to give it up for the summer.  But he did it because I asked him to.  This is just another example of the kind of strength and courage it takes to go through this disease and its treatment.  You do things that are really, really, hard and you do them for the people who love you as well as for yourself. 

The thing is, it's all relative.  For some people getting chemo, just walking down to the mailbox is a big deal.   For George, admitting that he can't do EVERYTHING right now is a big deal.  

Just for the record, he still has no problem going faster than me!

Tuesday, May 11, 2010

Good times in Bozeman

Just back from a really nice 4 days in Bozeman, MT visiting Caitlyn and all her friends.  This weekend was graduation weekend at MSU and a couple of Caitlyn's roommates are moving on to new adventures this week so we decided to drop in and visit with her for a long weekend. We left Denver on Friday morning and got back yesterday evening. It was great to see Cat and get to know all her friends a bit. Susan had also never been to Bozeman so we had a really fun 4 days staying at a B&B (FoxHollow Inn, highly recommended.) Mike and Nancy are great hosts and we had fun chatting with various other folks staying at the B&B over breakfast. It was also really nice to get away from home and not have to worry about chores, paying insurance bills, treatment schedules, etc. It was very refreshing to just go somewhere and have everything taken care of and be able to set all the worries aside for a few days. Yeah!

Susan and I were a bit worried about the trip - sitting on the plane with 38 other folks breathing bugs at you that your white blood cells have to battle (what few I have left!) and being on the go for four straight days. But everything worked out very well. We made sure to get back to the room every afternoon for a 1/2 hr. to hour long nap/recharge time and Caitlyn was just a super host. There were two graduation parties on Friday night and we got to meet a bunch of her friends. To minimize the chance of getting sick I decided I wasn't going to shake hands with the folks I met. This caused a bit of a strange first meeting as all the guys would extend their hands and I would do a sort of Obi-wan kind of hand gesture and explain that I had some blood chemistry issues and that I was using my designated hand shaker (Susan) to do all my hand shaking. Everybody was cool with that. Not sure if it was necessary but I felt like it was worth doing to minimize the risk of picking up a cold. It was also Susan's birthday on Friday and of course, Mother's Day on Sunday. So we  had lots to celebrate through the weekend. Had a nice birthday lunch on Friday, two parties on Friday night, tour of all the hot spots of the MSU Geology department Saturday, birthday dinner Saturday night, Sunday Mother's Day brunch and hot spring soak on Sunday, dinner with Caitlyn's house mates on Sunday evening, pal-ing around Bozeman on Monday including a trip to the MSU Museum of the Rockies on Monday afternoon (great dinosaur bones, also highly recommended).

At one of the Friday graduation parties Susan got to hang with one of the parents, down from Homer, AK. She gave us the down low that a bunch of the guys on The World's Deadliest Catch are pretty bad fisherman. Poser's that can only look good in front of the camera but aren't really the A Team of the Alaska crabbing industry. Good to know these inside details! The parents brought down some moose that they were grilling up. I slipped off the vegan bus for a minute and had a chunk - pretty tasty!

At dinner Sunday evening at Caitlyn's, we got to ask Todd what Star Trek character most reminded him of his wife (answer: Tasha Yar, good choice!) and also got to  head butt Patrick (friend of Caitlyn's and hockey player. He naively thought that head butts only happened with your helmet on, to the goalie, after a game. So I got to broaden his horizons a bit on that front.) Knowing that we could talk sci-fi and also head butt Caitlyn's friends confirmed our opinion that she has chosen wisely in terms of building her posse :)

A few highlights and pictures from the trip:

The Bridgers from outside our B&B north of Bozeman:

Susan standing in front of the B&B

When you ask for a compact rental car in Bozeman, this is what you get:

Good rental rate per square foot of interior but not much fun at the gas pump!

Hmm, do you understand ANY of this Geology? (One of Caitlyn's posters related to her graduate work:)

Where all the (science) magic happens - Caitlyn's lab space:

Caitlyn doing her best Mr. Science imitation:

Heading to Chico hot springs, north of Yellowstone:

Susan's got a few more Bozeman pics she'll post tonight.

Ok, back to work!

Wednesday, May 5, 2010

A nice bike ride, and today is crazy socks day!

I had a nice ride last night on my bike (Lee Hill Road to Left Hand Canyon to Olde Stage Rd, 8% to 11% grades). Got dropped by my two climbing buddies, worked like crazy to be last to the top. Ed and Glen were nice enough to wait for me at strategic locations -neither wanted to face the wrath after telling Susan that they had lost me on a bike ride :) At the top of Lee Hill it started sprinkling so we got to have some fun going 30-40 mph down Left Hand Canyon with a 25 mph cross-wind and some slightly wet and sandy pavement. An attention getter, for sure!

Anyway, the ride did a great job of flushing some of the malaise from my system. Had a good nights sleep, woke up feeling pretty chipper and decided that today should be a crazy sock day! Despite Susan's protestations I did indeed where this shoe/sock combo to work today:

Obviously I have a high fashion sense and I just need to wait for the rest of the world to catch up with what I know to be a great look. Or, maybe I'll just keep my feet hidden under my desk all day. Some of you have seen this look in person at Amanda and Verne's house a few weekends ago. For the rest of you, the picture will have to do!

Monday, May 3, 2010

chemo or no chemo, it sucks when your team loses

Got a chance to get over to Pleasant View yesterday and watch my men's team in action. They had a pretty good 1st half - had a goal from a set piece called back on a technicality, defended fairly well and the score at half was 0-0. Things started to go sideways in the 2nd half. A couple of mistakes in the back and we're down 0-2, the midfield has trouble retaining possession and building any sort of consistent attack, fatigues sets in, we give up another goal on a set piece and on a goal from getting caught in transition trying to press forward. Final was an ugly 0-4 defeat.

It was great to see all the guys and watch the game and you'd think that would be the dominant feeling of the day. But no! I was in a mild amount of agony watching the 2nd half. I was really wishing that I could have been out there trying to help out a bit. But after watching the game I certainly felt like I made the right decision to not play this season. It sure would suck to get Pete damaged or pick up some nasty injury and have that problem on top of the chemo to deal with.

After the game got a close-up of the t-shirt from last week. Here are two of the boys showing their support:

Hopefully my chemo will wrap up on schedule in September and I'll get a few games with these guys during the fall campaign!

More family gifts - yummy vegan gift basket

And when we got home from the cancer center this morning, my awesome sister-in-law had left us a little care package:

Hummus, olives, chick peas and bubbly water all go down smoothly, give me some nice carbs and protein and taste good to boot. So feeling a whole ton of support today, which is great!

I tried to lay down and take a nap and got about 20 minutes in of recharge. Then it got really boring. So again, energy level seems to be pretty good on the afternoon after chemo. I felt a bit nauseated in the car on the way home but a nice mellow lunch of mashed potatoes and vegan meat loaf calmed things down. Going to push a bunch of fruit juice and bubbly water this afternoon to help settle my stomach down and am looking forward to a nice easy mtn. bike ride after work. Onward and upward!

stylin' with the killer chapeau - SA Football Association

Got a really super cool gift in the mail today (thanks, g-man!!!!) As I lose my hair, I'm starting to wear hats, both for warmth and skin protection. This beauty showed up in the mail today as a gift from our oldest son and his wife:

So when I watch the World Cup games this summer I will certainly be wearing this ultra trendy hat to show my support for the beautiful game. Very sweet!

more from the cancer center - chatting about computer languages, hardware of the 80s and 90s.

Just had a nice conversation with a guy that's getting treated for colo-rectal cancer (We're all in here for something and no one's shy about sharing their info!) He's a mountain climber who's probably in his 60s - used to work at NCAR. He lost a ton of weight - down from 170 lbs to 122 lbs. Yikes! He's on the same cycle as me - every other Monday for 12 sessions. He's just doing his 6th session today while I'm on my 4th. So we'll be seeing each other for the next 6 every other Mondays. He's getting better over the last 2 months - gaining weight, starting to eat more so that's all good news!

Turned out we had some industry background in common - started talking about coding Fortran in the 70s, working with VMS and DEC hardware in the 80s, SGI and Sun hardware and OSes in the 80s. Not a big surprise I guess when you do chemo in Boulder. You will probably run into someone geeky, athletic or both!

Also got a nice visit from Beryl, the woman's who I've mentioned previously. She's fighting a bit of a cold today, small temperature, etc. But they managed to get her treatment in so that's good news.

Should be done in another 20 minutes or so. DTIC has gone in no problem. While I'm typing this, Susan is out getting my pet/ct scan scheduled. We'll try to get it scheduled a week from Friday - maximum time for round 4 to do its mojo and be ready for the oncologist to review in my next session 2 weeks from today.

And now the DTIC

Ok, we've finished the ABV of the ABVD. The last one - the DTIC - takes about 50 minutes to get in. Here's a picture of it before we start:

50 minutes of hanging out and we'll be done!

Blogging from the cancer center

Thought I would mix things up a bit and do some real-time blogs from the cancer center. I'm here for the end of my 2nd cycle, aka my fourth treatment (2 treatments/cycle). I'll post a few notes over the next 90 minutes or so as I go through infusion.

What's happened so far this morning:
  • Susan and I are doing a mtn bike ride tonight with some guys from work so I didn't bike into work today. But I did get in a nice run this morning before the chemo session.
  • Did a bit of work from home and then checked in at the cancer center this morning. Temp good, bp good, weight good but my white blood cell count is a bit lower. No change in treatment protocol for now. If it's still low in 2 weeks we'll do a dose reduction. My hemoglobin has stabilized so that's good news.
  • My left arm swelling hasn't gotten any worse. I've ridden my bike a bit less in the last couple of weeks and have done a few more runs. Leaning on my handle bars does cause my arm to swell a bit so I've tried to strike a balance between arm health and my love for being on the bike.
  • Oncologist did my exam and the tumors in my neck are still shrinking. I'm getting a pet/cat scan in about 10 days. Hopefully that will show that most of the tumors are not active.
Ok, so we're now in the infusion center and waiting to get started. Here's Susan waiting for things to get going:

And me showing four fingers, representing my 4th treatment:

Ok, got the line in ok. Pete is still doing well - good flow.

Now we've started the Adriamycin.  Note how much it looks like Kool Aid:

Dammit! I missed the velban. It went in while I was typing this...

and now the bleo:

No pain, no fuss, no muss! Just hang out and blog while I get shot up with meds that are making me better. Pretty simple stuff, really...

Saturday, May 1, 2010

what does it feel like to have cancer? and the call that saved my life.

I've had a few people ask me this - what does it feel like to have cancer? How did you know that something was going on in your body? What were the symptoms?

For me, and for many other people I've talked to or read about, the illness was very asymptomatic. I had a lymph node in my neck that was a little sore so when it didn't get better in a few days I went to the doctor. And if you're reading this blog, you probably know the rest. The point I want to make here is that with many forms of cancer, the cancer can be pretty advanced in your body before you develop significant symptoms. Breast cancer, prostate cancer, colo-rectal cancer, lymphomas, etc. By the time you're displaying acute symptoms, you're in some deep kaka and your survival rate is not so great. In my case, the cancer had probably been growing in my chest and neck for a year. The survival rates for the stage of cancer I have now are very high - but if I had stuck my head in the sand and waited 6 months or a year to go to the doctor, things could have been much worse. Much more painful and longer chemo, much greater possible side effects from chemo/radiation and much lower survival rates. I think the same is true for Susan's experience with breast cancer. In my case, the call I made to the doctor on February 16th of this year will probably result in me living 15-20 years longer than if I had delayed making the call.

So the simple answer to the question of what does it feel like to have cancer is - it feels like you don't have cancer. And that's the most scary part of the illness, I think. And now to the main point to this post:

Many people have asked me over the last 2 1/2 months what they can do to help me. It's taken me a while to figure out a good answer but it occurred to me this week. So here it is:

The best thing you can do to help me is to promise me that you'll be diligent about getting regular diagnostic exams. Some of these exams are a bit uncomfortable and invasive (for both men and women!) so I know that there's a tendency to skip getting your check-up when you're feeling great. But feeling great isn't a guarantee that everything is all good inside you.  And you're making me a promise to do this - right? Talk to your care giver and figure out what the current best practice is because guidelines on diagnostics do change over time based on research and of course your personal history - family history, age, etc. It would really make me feel good to know that one of the benefits of this journey I'm on is that a bunch of people I care about are taking care of themselves and  if there is something wrong, they're getting the bad news early, when the cure rates are higher and the treatment course less obnoxious. My journey through cancer so far has been much easier than many other people, but I can tell you this - I would not wish this experience on anyone. Forget the wisdom, forget the renewed joy in living each day to its fullest. I'd much rather have had no illness, be healthy every day until I was 85 or 90 and then die quietly in my sleep.

So that's my request for your help. It takes some discipline because I'm expecting you to do this year in and year out. Getting one exam and then being a slacker doesn't cut it! You'll know if you're holding true to this promise and I expect you will do this - for me, for you and for your family.

To retread a favorite trekie phrase - let's all live long and prosper !

ah, excuse me, but your nose is dripping...

One of the joys of chemo is finding out the million and one ways that your body can be tweaked when you're basically putting poison into your body. For me one of the strange side effects is that my nose has turned into an ultra-sensitive thermometer. If I get the slightest bit cold (like, walking in from the car to the house when the ambient temperature is < 72 degrees) - boom - my nose starts dripping. My sinuses are completely clear, my nose isn't stuffed up and I'm pretty sure this isn't a sign of getting or having a cold. But there's something going on in my nasal sinuses and blood circulation in my head. If I'm at all cold, the faucet in my nose starts running. As my ever present wing-woman, Susan spends  a lot her time subtly  motioning at her nose - kind of a hand signal that I should check my nose. Sure enough, it'll be leaking. And of course, when you blow your nose 20 times a day, it only takes a few days for the skin under your nose to start getting irritated. Now I'm starting to think that this is normal - doesn't everyone else walk around with a wet patch under their nose? So I've kind of morphed into a big puppy from that perspective -well intentioned but kind of gross with a cold, wet nose proceeding me everywhere I go. So I apologize ahead of time if I'm a bit slow to clean up my leaky nose in your company. You can just give me a little nose nod and I'll know that I'm leaking - again!