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!

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!

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!

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!