May 2012 Update

May 11, 2012 - It's been a pretty action packed 2012 so far.  I've had a lot of stuff happen in the first half of the year.  The first week of February, I visited my uncle in Boulder, Colorado.  I had an amazing time.  We went snowmobiling twice, took a trip to Vail, I got to enjoy a huge snowstorm while I was there, and I ate like a king the whole time.  My uncle Dick is an amazing host and always has great things planned for us to do.  If you are ever in Idaho Springs, CO you must check out Flipper McGill's Pinball Parlor and have a pie at Beau Jo's Pizza.

February also had Miranda getting her Ohio Temporary Instruction Permit Card.  Nothing makes you feel old quite like your child getting their first driver's license.  She's doing a great job driving so far.  Miranda also played softball for the Bishop Watterson Junior Varsity team.  I can't believe the season is over already.  She improved all season and had a couple of breakout games during tournament play.  Her bat got really hot, once my mom visited to watch her play ball.  The team ended up with an even 9 and 9 record for the year.

Little miss Laela celebrated her 40th birthday on March 23rd.  We got a crew of her closest friends together to meet at the party room of the local AMC theater.  We had a fantastic mockingjay themed birthday cake provided by Sauer Cakes and then we all watched the film The Hunger Games.  It happened to be the opening weekend for the movie and that was all that Laela had said she wanted to do.

In April we visited Nick and Sam in Jacksonville Beach for spring break.  That's two years in a row now, only Laela was able to go this time.  We drove down and we split the driving duties between the three of us.  Actually on the way to Jacksonville Miranda drove 450 of the 900 miles.  We took the scenic route by driving half of the Blue Ridge Parkway.  The BRP is a motorcycle trip that I wanted to do but don't think I'll get a chance to, so I talked Laela and Miranda into driving half of it so that I could see it.  I got the idea after riding on the Natchez Trace Parkway in November on my way back from New Orleans.  The BRP is a beautiful scenic drive and I was glad to get a chance to do it.  While we were in Jacksonville, we did the usual:  we went to the beach, rode bicycles, saw a Jacksonville Suns game, some mini-golf/batting cages, had great food and were able to have a nice visit with Nick and Sam.


On the health front, I had a bout with pneumonia in March that was pretty gnarly.  It kept me out of commission for about two weeks.  Since the beginning of the year, that had been the only bad news regarding my lungs.  That lucky streak came to and end last Tuesday when I visited the oncologist.  I had had a CT scan the previous Friday and it showed that the tumors are growing again.  It was only a matter of time until that happened, but as always I was hoping I'd get that bad news on the next visit.  I'm always hoping for my bad news on the next visit.  We discussed treatment options (which really haven't changed since I was first diagnosed with the cancer). Here are they are:


- Go back on a previously tried chemotherapy
- Try a new chemotherapy
- Try a drug that isn't chemotherapy designed cell mutation for which I tested negative but a few patients respond to
- Do nothing


I am electing the do nothing option.  I've tried three different chemotherapy treatments and they've all ultimately made me awful and whose efficacy eventually ceased. We know there will be unpleasant side effects from the chemo that will limit my activity.  I would prefer to carry on as I am and be able to live as normal of a life as possible for as long as I can.  I don't want to artificially make myself sick or more susceptible to other bugs.


All of this boils down to the question of quality of life.  I'm not going to get a better quality of life outcome by going on any of these treatments.  The disease is going to get me at some point there's nothing that can be done about that.  What I can control is how my time is spent between now and then and I'm opting for (please excuse my hyperbole) a less miserable existence.


For the most part I'm still not feeling terrible.  My cough gets a little worse and I can progressively do fewer things but it's a slow progression.  Whatever happens, it's just a matter of taking each day as it comes and try to do my best with it.

Blogdrought

1/30/2012 - Happy belated New Year. It's been quite a while since I posted a new entry for the SpeedWalrus blog. After returning home from New Orleans in November I spent the rest of the month and most of December in just hanging out at the house. The chemotherapy drug I was on kept me pretty run down most of the time. It also started wreaking havoc on my white blood cell count. This made me mildly paranoid about leaving the house because I didn't want to come into contact with germs which would make me ill. It also meant that I had to start giving myself injections of a medicine that would boost my white blood cell count. That drug made me feel even worse.

We were very excited about our Christmas holiday because Laela, Miranda and I were going to go on a five day Caribbean cruise starting on Christmas Eve. Unfortunately the day before we were to leave I had some kind of reaction to something that was being pumped into my system and both of my legs swelled up. It looked like my thigh extended from my groin to my foot. We went to the emergency room on December 23 (that's two years in a row if you are counting) and they admitted me because they were afraid that I had a blood clot. Needless to say the doctors weren't too keen on me flying and we ended up having to cancel the cruise. Carnival Cruise lines have not been very helpful thus far and it appears that we are just out of luck with regard to the cruise. No money back, no cruise vouchers....just a whole lot of nothing. It has been really disappointing dealing with them but I guess they've got they're own problems since their captains in Italy seem to be running their ships aground. Anyway, I was released on December 26.

In early January went back to the oncologist and we decided that I would take some time off from treatment. The last scan showed no disease progression nor did it show any tumor shrinkage. The time off is so that we can see if it is the drugs holding things in check or if the cancer is going to start growing again. Meanwhile, my energy has returned and I'm feeling somewhat human again.

Tomorrow I'll be travelling to Boulder, CO. My uncle Dick invited me out to stay with him for a week and take in some of the winter time sites of the Rocky Mountains. Delta was kind enough to issue us vouchers for the flights we didn't take for the cruise so it was kind of a no brainer. My camera is all charged up and I'm eager to get out west again to enjoy what it has to offer.

Lung Cancer Soapbox

11/17/2011 - It's November 17, 2011 which is the date for the Great American Smokeout. It is also Lung Cancer Awareness month. (I'll bet you didn't know that did you?) November is also Pancreatic Cancer Awareness month and Movember (men's health and prostate cancer awareness). I don't do this very often, but I'd like to take a minute to climb up onto my soapbox.

A couple of days ago I read an entry on the Livestrong blog entitled "Please Don't Ask Me If I Smoked" that kind of struck a nerve with me. Whenever someone finds out that I have lung cancer the next question that comes up is invariably "Are (Were) you a smoker?" The implication being that if someone smokes they somehow deserve cancer because they did it to themselves. No one deserves lung cancer (or any other type for that matter) and to imply that if one smoked they got what they deserved is ridiculous.

In my opinion the stigma attached to lung cancer has to do with the American Lung Association's brilliant and effective marketing campaign linking smoking and lung cancer. The unintended side effect of that is the close association of smoking and lung cancer. The thing that many people don't think about is that there are plenty of never smokers that are diagnosed with lung cancer every year.

Lung cancer kills more people every year than the next three most common cancers combined (colon, breast, and prostate) yet receives the least amount of funding per death.

(Image linked to without permission from the Lung Cancer Alliance)

During my research for this post I happened to stumble across and social media campaign called "WTF (Where's The Funding) for Lung Cancer?" Stop by and you can read the story of never smoker Leslie Lehrman who has contracted lung cancer. It mobilized her daughter Jennifer Windrum to start the campaign to raise awareness, fight the stigma, and increase the funding for lung cancer research.

So the next time that you hear that someone has lung cancer (which I hope is never), it is my sincere hope that you think about this before you ask them if they smoke. Thanks for reading my rant. I wanted to make sure I got this out there before November was over. Finally, since today is the Great American Smokeout if you do smoke I hope you'll at least consider participating for your sake and the sake of your loved ones.

A list of cancer awareness months can be found here: http://www.cancer-services.com/cancer_awareness.asp

Medical Update

11/10/2011 - Monday afternoon found me back at the oncologist's office for my regular checkup before my next chemotherapy cycle. About two months ago I started a new chemotherapy called Gemzar. It is the last chemotherapy drug that is available for me and when I'm finished with it chemotherapy treatment will no longer be an option for me. After that it will just be a matter of managing the symptoms of my illness.

The following is intended neither to be too melodramatic nor solicit sympathy; rather, it is a set up for the second half of the story. The side effects of Gemzar have been positively miserable up until now. Extreme fatigue, body aches, a couple of bouts of nausea, etc. I had a couple of weeks where I was so weak I was practically bedridden. I even got to the point where I had to start using a cane to get around on the bad days. Needless to say, after two cycles of this (8 weeks) I was ready to throw in the towel. I had every intention of walking into the doctor's office and telling him I was going to stop treatment.

About every eight weeks (or after two chemo cycles) I receive a CT scan to check on the disease's progression. Lo and behold, the results of my latest scan which were reported to me on Monday were overwhelmingly positive. All areas of cancerous growth had decreased by 25 to 40 percent (depending on how they were measured) and there were no new areas of concern. I certainly realize that this is only temporary so I'm not getting too amped about it, but it's nice to occasionally get some positive news. So for now I'm going to continue the treatment. The doctor adjusted my dosage to help me with the side effects and I'm happy to report that this week has been one of the easiest that I've had (aside from off weeks) since I started Gemzar.

We'll see how things go after the next eight weeks but for now I'll just be satisfied with the fact that things aren't getting worse and that the side effects aren't as bad.

Last Three States: The Finale

11/05/2011 - We all unintentionally slept in on Saturday. We missed breakfast at the hotel, so we thought we'd get a quick morning meal at Krystal's across the parking lot. After waiting for ten minutes to be waited on and weren't even acknowledged by the staff, we said eff this place and just hopped on the road. Dan led the way using his GPS to get us around Nashville to US-31 E on the north side of town. Once we got on US-31 E we promptly stopped at a Dunkin' Donuts for a much belated breakfast.

Our ride on US-31 E was not terribly long and before we knew it, we were in Kentucky. Once in Kentucky we hopped on US-68 and were treated to some really fun and twisting two lane Kentucky back roads. The weather was exceptional which made for fantastic riding. The ride wasn't nearly as peaceful and isolated as the ride on the Natchez Trace Trail but the twists and turns more than made up for it. We rolled into Lexington past lots of horse farms and horse racing venues and made our way to Interstate 75. An hour and a half later we were in northern Kentucky and stopped for our last meal of the trip together. I thought we'd go all out and have something really nice. Since we were robbed of our Krystal's in the morning, I found the nearest White Castle right after I-75 and I-71 merged. We had our meal, and parted ways. Tim and Dan continued to head up I-75 so Dan could go home to Dayton. Kevin and I continued up I-71 to Columbus. We got through Cincinnati and dark fell and it got chilly really quick. To top it off, my iPod battery finally drained just north of the 'Nati so I'd ride the rest of the way home in relative silence. I didn't want to pull over and take the time to hook it up to the charger because it would have just delayed my arrival home and I was ready to be home.

I pulled in the garage at 8:30 Saturday night and was thrilled to be back at my house with my family. I logged 2071 miles on this trip and thus ends my quest to ride to all 48 contiguous United States on my motorcycle. It has been an amazing journey. I've seen and rode places that I'd only seen in pictures and never thought that I'd get to see them with my own eyes in person.

When it was decided that I'd no longer be able to leave Columbus without an escort, I thought that was going to be the end of my travels and that I'd end up leaving Alabama, Mississippi, and Louisiana on the table. With that in mind, I'd like to thank Kevin, Tim, and Dan for taking time out of their busy lives to accompany me on this final leg of my voyage. It means a lot to me that they'd spend the vacation and take time away from their families to make sure I was able to finish this out.

I'd especially like to thank Laela and Miranda for being patient with and supporting me while I traveled across the US of A. It's been a long year and there have been lots of ups and downs through it all, they've supported me and my silly wish to see all 48 states. Miranda even rode with me this past spring when we went to Florida. They both joined me this summer when I was on the west coast and spent a week with me while I traveled. I couldn't have done any of it without them.

As for a future goal, I don't have one in mind at this point. Last year when I was diagnosed, I didn't think that I'd get the chance to finish this one, let alone get an opportunity to choose something new. For now I'll just be satisfied with what I've done and be thankful that I was able to do it.