Monday, June 28, 2010

A crazy few days last week - concerns over bleomycin pulmonary toxicity

We had a few crazy days last week which I wanted to share. Last Monday started off fairly innocuously. I came in on an off week to get my blood work done to check my WBCs. Those all looked good. But, I had a couple of symptoms over the weekend I also wanted to investigate. Both Friday and Sunday nights my upper air way felt a bit constricted and I wanted to chat with the PA about that (my oncologist has been on a month long sabbatical so I've been seeing a  PA). She puts on a heart-rate/O2 monitor on my finger to see how things are going and it shows that my O2 saturation has dropped from 98->86% (most people in Colorado would typically run around 94-98%) and my heart rate has jumped to 157. Whoa. They then put me on a blood pressure cuff that also measures heart rate and  my heart rate is 135 sitting. Double whoa. I sit there and  hydrate for a bit and my heart rate goes down to about 85. But at this point, the shit has hit the fan. They're worried that I may have some pulmonary/cardiac misbehavior going on and don't want me to pull a Jim Fixx. Look really healthy and then drop dead of a heart attack. So the medical system kicks into hire gear with me at the center of it. So the next 48 hours look like this:

  • Call Susan and give her the heads-up that the world has turned "interesting". Kind of like the calls after you crash on your mountain bike. "Hi. I'm ok. But. I may be headed toward some major cardiac event. And how was your morning?" Honestly, I can't image what it must be like to be married to me and get these phone calls. I'm really thankful she still answers the phone but it must be getting a little old! So now she's completely weird-ed out - should she come over to the hospital, is it all a false alarm, what? So she tries to work for a bit, realizes she's completely useless and heads over to do the wing-woman thing in person. Meanwhile....
  • Across the street for a 12 lead EKG. The machine says that my heart rate looks normal. So far, so good.
  • Then down the hall way to get a CT chest scan with contrast. The contrast is an injection you get that makes the CT scan more readable. It uses iodine which is the chemical that people tend to be allergic to when they have a shell fish allergy. Which I do have, so I tell them. But I had a CT scan with contrast in March and it was fine, so I'm not worried. I get into the CT scanner, they inject the die, and I almost immediately start thinking - "I am going to puke all over this machine." To think that I've been through 7 doses of ABVD without ever getting anywhere close to yakking and now I'm going to lose it over this diagnostic dose of contrast." Luckily, I get through it without giving the friendly technicians a view of what I had for breakfast. Back over to the chemo center to wait for results. If things look bad, I will get checked into the hospital. And for sure I can't ride my bike home until we figure out what's going on. I go into the bathroom and notice that I've now get two big welts on my face. Allergic reaction to the contrast. Great...
  • An anxious 1/2 or so waiting for results. Susan shows up and we do the hand wringing thing for a bit.
  • Results are back - someone has interpreted the EKG and suggests that I have an abnormal heart function - a partial left bundle branch block.
  • The PA is now concerned that the LBBB, combined with the episodic tachycardia and breathing symptoms I had might be an early sign I'm getting some bleomycin induced pumonary toxicity. This is Bad Stuff - once the bleo damages your lungs there is no way to fix it.
  • So, to get on top of this we decide to start me on a pretty high rate of a gluco-corticoid - Prednisone. This is a pretty powerful steroid that is widely used in chemo, RA and immune-system disorder diseases. Short term it's wonderful stuff. Long term it is more Scary Shit. Obesity, changes in behavior (think roid rage), body shape changes (buffalo hump back), increased risk of infection, increased hypertension and the risk goes on. Sigh.
  • Because of the concern of bleo toxity, we decide to do another pulmonary function test to characterize my lung function. Get the test scheduled at 3:10 and at 3:20 I'm in the door at the cardiac/pulmonary office at BCH. Talk about a killer health care system! 
  • The guy that does my PFT is just back from Ride the Rockies and has done the Copper Triangle. So we have fun chatting about biking while running the tests. My pulmonary function still looks really strong - I'm at about 130% of lung volume function for a guy my height, weight and age. We then run another test that looks at gas diffusion rate. That number is decreased, down from %150 of normal to 125%. So I'm still high normal but no longer a super man with my current lung function...
  • Good news is that the CT chest scan looks good. So I don't have any visible evidence of lung or heart damage. And the CT scan shows that my lymph nodes continue to shrink.
  • Tuesday mid day - get the news that they want to get an echo-cardiogram to further evaluate cardiac function. So back to the cardiac/pulmonary testing center for another test. 
  • This test also looks normal. Lots of details on cardiac function I don't completely understand but the bottom line is, no major obvious issues. Which is obviously Good News.
  • Tuesday afternoon, we get a consult setup with a pulmonologist. The chemo guys admit they don't know quite what's going on so they want a specialist consult. So we get that scheduled for Wed morning.
  • Wed morning and the appt is right when the US is playing Algeria in soccer in the World Cup! I know my priorities are screwed up but I REALLY want to go over and hang with my peeps and watch the game. But of course I have to be all adult and go to the doctor's appt. The US gets the game winner in the 92nd minute while I'm in the waiting room so I can at least relax about that.
  • Get into see the pulmonologist and he's really great. Turns out that I don't have an LBBB, I have a partial right bundle branch block. And, I had it on the EKG in March as well as last week. And, this is common in athletes as part of their heart over develops to the point where your rhythms can change and makes the EKG look abnormal. He puts on an O2/heart rate monitor and we hike up some stairs in the hospital. My heart rate elevates but it's not crazy and I stay pretty oxygenated. So his bottom line is that I don't have anything obviously wrong with me from a pulmonary perspective:
    • And I can go to Crested Butte (8900 feet, questionable place to hang out if you're worried about your lung function)
    • Yes, I can ride my road bike
    • Yes, I can mountain bike, but listen to your body as there's really no easy mountain bike riding in CB (too true!)
  • While all of this is going on, the PA is on consult with the other oncologists in the practice. The big question is - to bleo or not to bleo? They're pretty convinced that something was going on in my pulmonary function and so again, we're into risk management. We don't want to do anything that reduces my long term survival rate but on the other hand, if you treat someone and end up turning them into an invalid because they can't breathe, that would be A Bad Thing. 
So it's a major decision point. What to do? It's at this point that you realize that there's some art and craft in this as well as science. There is research to support the approach that most of the value from bleo comes in the first few doses. And I'm an early stage 3 guy and if I was stage 2, I would only get 8 dose of bleo anyway. So here's the new treatment plan:

  • No more bleo
  • Six weeks of prednisone, tapering off from 60 mg->0 mg over that period
  • Get an exercise stress test to see if there's any underlying pulmonary/cardiac issue that needs to be addressed.
As of this morning I've been on the Prednisone a week. It's made me a bit hyper but in general I feel OK. It would be nice if removing the bleo from my protocol makes me feel better after treatment.

So it's been a bump in the road and a bit unsettling to think that my core organs may get permanently damaged from this treatment. But being scared gets kind of boring and tedious after a while. It take energy and work to stay scared and there's no payback. So I've been chanting a bit to myself this week. Trust my body, listen to my body, Don't Be A Dumbass physically.

Ok, that's the deep medical dive for the day! Hoping that the prednisone clears up any nascent lung problems the bleo created and I have another 56 boring days of chemo and recovery.

    Infusion 8/12 - smooth sailing

    Hi, all. Back from an AWESOME few days in Crested Butte and back in the big chair for another infusion. Here I am signaling 8/12 treatments:

    As you can maybe make out, my bald head has gotten a bit of sun so I'm starting to look a bit more like a bald guy and less like a lame chemo patient without hair.

    It was a beautiful day today and I was feeling pretty chipper in the morning so I biked to work and then biked over to the chemo center. And yes, this is my big F___ You to the whole treatment - every time I can manage to bike over to get an infusion I feel like I'm making a statement. Maybe it's a lame, useless statement but I'm still making it...

    All my tests looked pretty good today. Heart rate, blood pressure, WBCs, temperature all OK. My WBCs are sliding down a bit again so we'll keep an eye on those. I've learned that you want these sessions to be uneventful so I'm just blogging while waiting for my DTIC to drip in.

    Wednesday, June 23, 2010

    Gear fun on the way to CB

    So today we're off to Crested Butte for a few days of fun in the mountains.Had a tense couple of days earlier this week with some potential pulmonary issues which I'll blog up in a separate post. But the good news is that I'm ok and we're headed out to play!

    Susan's doing her wingman thing and driving us - here she is going up Fremont Pass (easier than it will be on the CT in August! :

    Susan's two rides taking in the scenary from the roof of the Audi A4 Avant:

    The Ibis Mojo, complete with new chain rings and POS rebuilt Mavis rear hub:

    And I've taken this opportunity to seriously do the mobile geek thing.

    Here is what we're rolling with:

    - Nuvi for trip info, navigation and BT client for our phones
    - Two BlackBerries for smart phone, mobile e-mail, weather, Facebook, Tweets and backup nav with Verison navigator
    - Dell E6400, 8GB memory, 260 GB SSD
    - Verizon myfi hotspot for mobile internet access for the Dell

    So here's the picture from the navigator's cockpit:

    Checking out the weather in CB from Satellite map shows a clear, high pressure front of CB, clear weather for the next 48 hours with some cloudiness and afternoon t-storms on the weekend.

    That's it for now! Posting before we leave Leadville and good cell connectivity. More blogging later!

    Sunday, June 20, 2010

    A good father's day weekend

    Hey, all. Not a lot of new medical information to report so instead I'll just share the highlights of a really nice Father's Day weekend. Took Friday off and Kyle, Caitlyn and I watched the US/Slovenia soccer game (virtually) together. Kyle and I were in L-town and Caitlyn was in Bozeman. We got video skype going between our two casas and screamed at our respective TVs throughout the entire match. A fun game but WTF on that third goal?

    After that Kyle and I went to a 10:20 am showing of the A-team. What fun - a completely empty theater to watch a great man-movie. Here's a picture of Kyle in the theater:

    After the movie we chowed down on some lunch time sushi. Seemed like a great idea at the time but the old GI tract wasn't too happy later in the day. Sadly, looks like sushi may end up on the no-fly list, at least for the week immediately following an infusion.

    Friday afternoon Susan came home from DC so it was AWESOME to have her back in town. Saturday we did chores in the morning and then went to celebrate a friend's 40th birthday. Amazingly, Ed looked pretty mobile without the walker or wheel chair. Still pretty chipper for such an old guy :)

    Today we got a new bike seat on Susan's bike and then had another strange lesson in patience given to me by the universe. Through a series of problems, I ended up changing out inner tubes on both my road bike wheels SIX times in a period of two and a half hours. This involved trips to 4 different bike stores. Wow. This was the kind of silliness that you would never script in a story. Bike stores closed, pinch flats, valves too short for rims, etc, etc.

    Finally got out on a tough 25 miler doing hill work on the Morgul Bismarck route and in Louisville. I sun-blocked up and wore a sleeveless jersey and it felt way better than wearing a long sleeve shirt last weekend. One of the nice things about being on chemo is you never have to apologize for wheel sucking your bike partners. Here's a picture of Susan towing me along 128 just after we climbed "The Wall" on MB:

    Still got a whole lot of work to do to be ready for the Copper Triangle. In all honesty, I'm not sure I'll be able to do it. Although I'm still active, each dose of the wonder drugs does seem to notch me down  a bit lower in terms of what I can do physically. I guess if it's just completely obvious that I'm not ready for that I'll go up to Copper for the weekend and do a mellow ride on my own while all the other folks do the CT. We're going to Crested Butte for a good part of next week and I'm going to try to get in a lot of both road and mountain bike miles and see if I respond with any increase in fitness or if my body is just not able to get fitter while I'm going through the chemo.

    After I got done the bike ride and hung out for a while I kicked the soccer ball around just to honor the World Cup. And wow, that was pretty gruesome. My physical dexterity seems ok (can juggle the ball ok, pass, kick, etc.) but running, especially after the bike ride, just totally gassed me. I'm hopeful that I'll be able to play on my men's team for the last 1/2 of their season so today was my first training session with that goal in mind! And it was pretty gruesome. Hopefully there's no way to go but up (famous last words, right ?)

    After the kick around, Kyle, Susan and I went to a new favorite restaurant of ours in Boulder, Leaf. The service is typically pretty "mellow" (Boulder code word for slow and bad) but the food is uniformly good. Perhaps another lesson in patience for yours truly? Anyway, it was a really nice meal. After that we drove up to  the amphitheater on Flagstaff and took in the late afternoon light over Boulder. I've ridden my bike up that road a bunch of times over the last few years but I think it's probably been 15 years since I've actually walked down into the amphitheater. Definitely a nice place to be as the sun sets over Boulder.

    Tomorrow I'm into the cancer center for a quick check on my blood work and to get Pablo cleaned. Nothing much else to report so that's it for now. 9 weeks from tomorrow I'll have my last chemo if everything stays on track.  For this week, just concentrating on being healthy - eating well, lots of good sleep, fun, exercise and good company in CB.

    Monday, June 14, 2010

    Infusion 7/12 - in the books

    Kind of boring over here at the infusion center this morning so I thought I would blog about some new things we learned today that I will use to help get through the chemo.

    First. got my PICC line retainer cleaned. This is done by the pros. If you screw this up, your PICC line can slip out and if you get some bugs into your vein, that can also be A Bad Thing. It's no big deal but you want someone with good manual dexterity and experience doing this. Here's a picture of what the PICC line looks like naked - just a plastic tube sticking out of my arm.

    I did have a thought of ripping it out and running out of the building. "I'm breaking out! Enough of this sh_t! I can still probably outbike everyone in this room so I'm gonna take a flyer!" Of course, that's not a terribly mature thing to consider and because I've attained such levels of maturity over the last 13 weeks (right....), I refused the temptation to yank the line out. Plus, Susan would have probably tripped me and sat on my head until I came to my senses. Gotta love that wing-woman!!!

    We had a nice session with a PA this morning and talked about some nutritional things I can do to help ease some of my GI woes. I'm going to start some probiotics that will help replace some of the good flora that should be in my intestine but are getting nuked by the antibiotics I'm on. We also talked about different types of beans - apparently some of the larger beans can get mushy in your gut and are harder to digest than smaller beans like legumes and peas. She also said that soy can be hard to digest so given that Susan has had some trouble with soy we'll probably minimize soy in my diet.

    I've had a bit of tenderness under my armpits so I had her check those lymph nodes. Since they haven't shown up as being active on the PET scans, the thought is that these are sore from processing some of the backed-up lymphatic fluid from the nodes that have old (dead!) cancer cells in them.

    And hey, if you want to talk about courage. Bringing that kind of thing up takes A LOT of courage. What if it's cancer manifesting itself in new nodes that is resistant to the chemo? What do we do then? Do I want to know the answer to that question? But if you don't say anything and it turns out to be something that kills you, you would feel like A Major Dumb-Ass on your deathbed thinking "if I had just said something, maybe this could have been fixed." So, I brought it out in the open and we're pretty sure it's not a sign of more malignancy. It's that kind of Shit that Rocks Your World. Heavy duty moments, to be sure.

    Next, my weight. It's been a rock solid 186 with my clothes on, not varying more than 1/5 of a pound over 16 weeks. How weird is that? With all the strangeness going on in my GI tract and varying amounts of exercise, energy and chemo med levels, tumor growth, etc. it just seems totally bizarre to me that my weight would be that constant. I guess something inside of me really, really wants to weigh 186 lbs. So I've given up trying to eat more to keep my weight up. Just going to keep trying to eat healthy and keep things flowing through me ok.

    More details - last time my blood pressure was up a bit but today it was super normal. Good news there. Would hate to get cured of cancer and then drop dead from some hyper-tension related event.

    Blood chemisty news - things are starting to slide down again. Since I'm being optimistic today, I'll say that this is a great sign that the ABVD is really targeting rogue white cells (from which Hodgkins starts) and blasting them and some other WBCs are just suffering collateral damage. Hopefully the downward slide won't be too traumatic and I can avoid/postphone any more neutrogen. I'm at an ANC count of 1070 today. Below 1,000 is the general threshold of being at risk of infection, < 500 is pretty serious and I was at 360 when we decided to do the neutrogen

    Next, I was talking about how exercise has been such a good part of my managing my treatment. Got a pointer to an interesting article in the NY Times (here) that talk about a potential genetic inclination to exercise. Interesting! So now I have an excuse to use when folks tell me I should mellow out a bit during my chemo treatment. I can't! It's not that I'm being a dumb-ass; this behavior is coded into my DNA. Yeah, I like that excuse...

    Finally, I'm getting a bit of tingling in my fingers - peripheral neuropathy. This can happen to diabetics but can also be caused by chemo. I'm going to start taking something to battle that (alpha-lipoic acid). If left untreated, this can progress and you can lose feeling in your fingertips so it's definitely something to stay on top of.

    But in general, things are still on track!

    Ok, I'm done with infusion #7; time to catch up on some work. Another mini-milestone passed. Yeah!

    A new gizmo to make showering oh so easy!

    The helpful folks at the chemo center gave me a pointer to a nice little gizmo that facilitates taking showers when  you have a PICC line. The DryPro for PICC lines is pretty nice. Just slide it over your arm, pump the air out and take your shower. It took a bit of practice to get it right - if you don't have it snug at both the top and the bottom you won't get a good suction seal and it'll never get tight. But once I figured that out, it's been pretty nice. Much easier (and dryer) then the home made saran wrap contraption I was using before. Initially out of the box it had a pretty strong rubber smell - both Susan and I could smell it on me after I showered. But now that it's been in use for a week or so that smell is getting less intense. The advertisements  say you can swim with it but I'm not sure I'd stress it that far. But for showering it's really nice. I've also used the jacuzzi in our bathroom with this on and it's nice to not have to constantly worry about keeping your arm away from the water. In another post I think I'll list all the crap that I've got to manage with my PICC lifestyle. Being a gear geek at heart I've sort of gotten into the whole thing but I can certainly understand why everyone's going to an implanted port. Well, not everyone. Just those of us with life threatening diseases that need to ingest chemicals that are so strong that they would melt the paint of the walls. But heh, don't be envious - I'm sure you have fun stuff in your life, too!

    Guest gardener in the house!

    We got a Caitlyn sighting this weekend, which was really great. Coincidentally, she was in town at the same time as our nephew Gabe and we realized over dinner that they hadn't seen each other in 9 years. Crazy! Anyway, with all the rain we had this weekend we needed to do a bit of work to complete the front terraced garden and make it a little more rain resilient (better drainage from the down spout, added mulch, etc.) Here's a pic of our guest gardener doing her Vanna White thing:

    And of course, no review of the garden would be complete without a brief advertisement for the wonders of duct tape to solve problems with machines you might run into along the way:

    Kyle tells me that the chain saw is running a lot better since his recent rebuild, including the judicious use of the duct tape. I think I'll let him run that bad boy for a few more sessions and see how the tape job holds up!

    That's Mr. Cueball to you

    Over the last few weeks my hair has been getting a bit patchy. I started with a #3 cut, then went down to a #2. Lately I've been starting to look a bit like a dog with mange - some parts of my head had pretty reasonable hair and others were pretty sparse. On Saturday I decided to go down to a #1 to make things more uniform. As the woman was running the #1 trimmer over my head, I was - like - Whoa! That's pretty short. Like non-existent. So now I'm pretty much a baldy. Think Natalie Portman in V (well, maybe that's way too wishful thinking in terms of how good I look. More like Mr. Clean from the old cleaning bottles).

    Anyway, here is the current look. Enlightened Buddhist? Hate crime skin head devotee? Or perhaps just a guy that's been through 6 doses of ABVD. You decide!

    Thursday, June 10, 2010

    A Little Over Half Way Through (by Susan)

    Hi - I haven't posted to this blog for a while.  I think it's because now we are In The Middle and there doesn't seem like a lot to say.  We have established a rhythm of sorts with the chemo - George goes in on a Monday, he starts feeling mildly bad that night, then feels worse until about Friday, then starts picking up again on Saturday.  For the second week he keeps feeling better and better, until he feels pretty good on the weekend just before he has to go in for chemo again.  He described it kind of like being asked to stick your finger into a wall socket on purpose every two weeks.   And while we are grateful and thrilled that the chemo is working so well, it is still hard to do and 6 more sessions and three more months seems like a long time.  

    George and I went for a 30-mile bike ride from Louisville out east to Erie  last Sunday and neither of us was feeling that great.  I was not going too fast and neither was George.  I kept thinking that I am never going to be in shape for the Copper Triangle (85 miles over three mountain passes in August).  We were all disappointed in ourselves and then when we got home w found out that the temperature was around 100 degrees!  George was happy to realize that he wasn't feeling bad from the chemo, he was just feeling bad because it was hot! 

    So, how does halfway feel?  The PICC line is kind of a pain because it requires more daily maintenance than the power port did.  However, the PICC line gives him better range of motion and does not seem as noticeable to him as he does all of his activities.  The chemicals still feel nasty.  However, George is feeling better in some ways because the tumors are gone so his body is no longer getting rid of them and he can breathe more easily (some of them were near his lungs).  I told George that he has to keep being a warrior - keep going in when he'd rather not, so that he can completely get rid of all the cancer cells and he will stay healthy for years to come.   Also, I told him that he IS allowed to ride his mountain bike, but he is NOT allowed to fall!  No falling, buster.  Just STAY ON THAT BIKE!  So far, he's done a good job of it, although I suspect that the whole "I promise to ride like a Grandma" thing has a few holes in it.

    On the vegan front, I still have not eaten any meat since March 1, although I have eaten a bit of dairy now and then.  George has eaten more meat and dairy than I have, but I think he just needs to listen to his body right now, and eat what tastes good to him.  There are many foods that completely turn him off right after he's had chemo.  For some reason all the chemo patients seem to like french fries and potato chips.  Also, he says that the smell of fish can make him feel sick so it's kind of like being pregnant.

    One really cool thing about going vegan has been that I completely got rid of my joint pain.  I had been having pain in my knees and elbows over the last year or so, and that has completely gone away.   I think this has something to do with animal products leading to more inflammation and vegetable products getting rid of it.  We've been eating a lot of the "super foods" that you read about - walnuts, almonds, berries, spinach, flax seed, and, of course, chocolate!

    For all you would-be vegans out there, here is a really great recipe I have tried that doesn't seem like your traditional vegan recipe at all.

    Mediterranean Pasta with Kale

    Cook 1 lb whole wheat pasta, such as penne or bow tie pasta
    1 bunch kale, chopped into small pieces with large ribs removed.
    1 tbsp olive oil
    2 tbsp lemon juice
    1 clove garlic, minced fine
    1/4 cup pine nuts
    salt and pepper to taste

    Cook the whole wheat pasta in boiling salted water.
    Heat about 1 cup water in a large skillet and cook the kale in it until soft.  Drain and remove the kale.
    Heat 1tbsp olive oil in the skillet and saute the garlic until clear.  Add kale and lemon juice and salt and pepper and heat. Continue cooking until the kale is nice and soft.
    Add drained pasta to the skillet and toss.  
    Serve on a large platter topped with the pine nuts.

    This is really delicious and is even good topped with a little parmesan or romano cheese for cheese-lovers, but it is great without the cheese too because the pine nuts provide a nice piquant touch.

    George just told me that I should not use the word "piquant" in this blog, but it's my entry so I'm leaving it in. HA!

    Anyhow, signing off now and going to try to get some sleep!

    Tuesday, June 8, 2010

    The strange stories people tell you when you have cancer

    It's funny how people express concern  about you. Here's an example. I've been going into a Subway shop for lunch for several years. A couple of months ago one of the workers noticed the scar on my neck and wanted to know how I was doing. So I gave him the brief run down of having cancer, things were going well, etc. Today as I was getting lunch another one of the workers asked me how I was doing and I thought "gee, that's nice. These guys are talking about my condition and this woman cares enough to ask." So I give her another high level summary - tumors getting smaller, feeling good, getting better. Here's where the story goes off the rails. She tells me that she has a friend who had cancer. She was cured and I'm thinking "ok, nice story. Like to hear about people getting cured of cancer." But no, we're not done. She then says in this voice that is a combination of intrigue, fear and concern that her friend has recently had a really bad ache behind her eye and has just been diagnosed with a tumor in her head behind her eye. Great. Nice story. Thx for sharing. So What The Fuck? Does she think that I'm going to be all jazzed up about this because I'm a card carrying cancer club member. Remember  - I DO NOT LIKE BEING IN THIS CLUB! I DID NOT ASK TO JOIN! I AM TRYING TO RESIGN FROM THE CLUB! And so on and so forth. It just amazes me when people tell me these stories. What are they thinking? Do they think that somehow this is going to make me feel better or closer to them or that I'm really interested in sharing all the tragedies that cancer brings into their lives? I mean, I'm working really hard at being compassionate to all the cancer folks I run into at the chemo center but I'm not in a big hurry to run out and make a whole bunch of new cancer friends. Maybe this is overly selfish and the universe is trying to teach me another lesson but my feeling is I HAVE ENOUGH OF MY OWN CANCER! Telling me stories about other cancers (especially ones that aren't going so well) is just not a big win for me.

    So I just told her that it was hard to have cancer, the treatments are always getting better and I hoped her friend was going to be ok. But inside, I'm thinking - "You are A Dumb Ass. If I knew which one was your car I would like to throw a rock through your windshield. And, I basically hate you for telling me this." Well, maybe that's a bit too strong. But come on, people! Try to think what these macabre, gruesome stories do to people with cancer. So if you've got a great cancer recovery story, I'm all ears. If you've got stories of cancer ending badly, I think I'll pass, thank you very much!

    Pablo status report

    Haven't felt like blogging for a while so sorry if you've been checking the site and coming away empty handed! So a couple of blogs to get back into the swing of things.

    This one is about how Pablo is doing. In a word, pretty well. I was worried that he would be a PITA but so far he's been a pretty good wing man. Having the line stick out of my body is slightly gross but I feel it less then the port I had in my chest. Sleeping is easier and I'm not getting swelling in my hands which is a good sign in terms of venous circulation.

    Pablo is a bit of a needy wingman, however. There are two issues to guard against:
    • If the line gets clogged, it makes getting a chemo infusion harder. So we flush the line every night. It's very simple, because the port has a female screw thread on the end of it. The syringes have male threads (heh, heh...) so you just screw the syringe into the port and push the saline/heparin through. No needles, pretty simple. 
    • The 2nd issue is that you don't want the infection boogey-man to visit. So when I sweat a lot we'll change the tagiderm over the base plastic assembly that clamps the line in place. We've done this a couple of times this week and it seems to be working well
    The only issue I've faced in the last week is that a bit of skin at the edge of the tagiderm is a bit rashy. Looks kind of like a heat rash or a reaction to the adhesive. Not too bad and we trimmed the tagiderm the last time we changed it to give that piece of skin a chance to be exposed to the air.

    Not to say we haven't had some fun with this, btw! Here's a scary picture of  the most junior member of our family tribe getting ready to get primal with some syringes.

    Did I mention that the syringes typically have some air in the end of them and if you inject too much air in your heart you can die of a cardiac embolism? Eh, we'll just let that one slide by and hope that he does a good job of watching for where the air bubble is!

    One other minor irritant is that you have to wrap Pablo before showering. So far I've been using a one-and-done home made saran wrap/tape contraption:

    I've ordered a neoprene sleeve with an air bladder that you can use to evacuate the air and provide a pretty tight seal over your arm. That should show up tomorrow and will be definitely be an improvement over the home made contraption.

    I've been on both road and mountain bike rides with Pablo and he's done well. Have also done yoga no problem. So he's been pretty high function. A bit more maintenance than Pete but hopefully Pablo stays the course and we get another 76 days out of him. We'll see!

    Tuesday, June 1, 2010

    Introducing Pablo the PICC line

    Morning, all! I'm here at the oncology center getting my 6/12 infusion. This morning I went over to the hospital to get my PICC line installed. And here he is - Pablo the PICC line:

    The insertion procedure was trivial and uneventful. We put Pablo to work right away and he's done a good job with the Adriamycin, Bleomycin and Vinblastin. DTIC is going in now and everything is running smoothly.

    Some negatives of the PICC line:
    • Have to flush it every day. This is pretty simple - hook up a couple of syringes like this one:

    • push the solution - one saline, one heparin and we're good to go.
    • And here is my super nurse that will be helping me with this:

    • The other problem is that if you sweat (in my case, WHEN you sweat), you can get bugs under the dressing, which can travel in through the PICC line opening into your skin and cause an infection. And in the chemo world, infections are A Bad Thing. So we're going to get some Tegaderm and change the dressing after I exercise. The folks at the hospital suggested I just not sweat for 12 weeks which didn't seem like a very realistic plan. I'll get the dressing changed every Monday at the oncology center but in the interim after I exercise we can just remove the outer Tegaderm bandage, clean the site and replace it. 
    • I also got a pointer to DryPro, which provides a waterproof covering over the PICC line. Might be really useful for showering and may also allow me to swim, which would be very cool. 
    So at soon as the DTIC completes (another 15 minutes or so) I will be officially 1/2 way done with treatments. Yeah!