End of Cycle Nine From Both Sam and Leslie!

Please know that every single comment brings a smile to both our faces, most more than once. We go back and read old ones, read them to each other a couple times, and talk about how thoughtful and funny they are.  You are the best group of friends and family anyone could have going through this.

Here’s a short summary video of the last couple weeks.

Outta Whack

Greetings everyone!  We’re a little off our routine.  We had a delay in treatment because of Sam’s lung infection, so last week was chemo-free.  We were hoping that Sam would be able to start treatment the week after checking out from Hotel Vanderbilt, but the oncologist said, “No way Jose” (in a medically-big-word-filled kind of way).  Understandably, she was worried that Sam was still prone to infection and it was in our best interest to take another week off from chemotherapy.  That put us at this week for resuming treatment.

Having a delay in treatment is a blessing and a curse.  It’s a blessing because it gave us the opportunity to be away from the hospital for the week and live as normally as possible.  Sam deserves a major Whoop! Whoop! for working a full 40 hours from home last week.  Hooray for Sam, BB, and Theo, for all working together throughout the week.  A delay in chemotherapy is a curse because we make no advancements to getting towards the end of all of this. We’re still proceeding slowly though, and we’ll get there when we get there.

Chemo Talk

We are super excited to get this week over with.  This particular cycle is rough on Sam.  Fortunately, the FDA puts lifetime limits on certain chemo drugs and this week marks the end of his use of a nasty drug called Adriamycin.  Sam will no longer be able to receive Adriamycin and Dr. Keedy has assured us that life will get a little easier.


Will Now Become This:

What’s Next?

Now that this week is over, there are five more cycles of chemotherapy.  Each cycle is preceded by a week off from treatment, so that is 10 weeks total, if everything goes as planned. One lesson we’ve learned is that everything probably won’t go as planned.  For the sake of forecasting though, we’re going to pretend like things will stay simple.  That would put the last week of treatment at December 11th – 17th.  It would be very cool to wrap up treatment this year, but we’ll just have to wait and see if that happens.

Regardless of when we finish, we will throw what our nurse Laura calls a No Mo Chemo Party. The party will start in the infusion center and it will continue to the beach. The vision of a chemo-free vacation after finishing this part of our lives makes the light at the end of the tunnel glimmer and dance.

Maybe a little far fetched

 Bruce Dan’s Blog

While we were enjoying our stay at Vanderbilt, we happened to read an article in their excellent hospital newspaper, the Reporter, about the late Bruce Dan.  He worked at Vanderbilt as a doctor in his younger days, and passed away just this year from leukemia after a yearlong battle.  The article linked to his blog at http://brucedan.wordpress.com and we checked it out.  His near-daily posts are delightful to read.  Leslie loves it when I read aloud to her; all she has to say about it is ‘read another one.’  We recognize many similarities between his experience and ours, and he’s given us some very good, practical ideas.  He seems to share a common outlook and understanding with us.  His expression of love for his wife and appreciation for his family and friends is touching and instructive.  It’s hard to recommend a story with such a sad ending, but if you or a loved one is going through cancer treatment, you might find he gives expression to your feelings and experiences in a way that makes you smile with recognition.

 One Hell Of A First Year

We had our first anniversary last week! We celebrated it for the second time. The first time, we took advantage of Sam’s month off after his surgery, and threw down while we were both feeling well.  That’s another major Whoop! Whoop! Two celebrations are better than one. For the 2nd occasion, we just went on a walk and curled up and watched a movie. It really doesn’t take much to make us happy these days, a day together in good health is plenty.

A walk at Radnor Lake

We can’t help but think about everything that has transpired over the last year.

Nightmare is the first word that comes to mind. Cancer and chemo are a constant distraction.  There are no nights of uninterrupted sleep.  We could go on and on about the daily struggles and worry, but it’s just easier to say that the last several months have been scary.  We’re usually so frazzled that the cats probably think that we’re the looney ones. We have had a lot of really bad days these last few months.  We have an ongoing contest of which day has sucked the most.  Sometimes at night, we laugh when we go over everything bad that happened on that particular day.  Maybe it’s a little bit of sleep deprived insanity kicking in, but this always snaps us out of our funk and puts us at ease.

Looking out from the vantage of bad days and persistent weariness provides some perspective. Good times become more vibrant and easier to remember. We appreciate each other and our own time much more than ever before. Most of all, we realize that the most important parts of our lives are each other and our family.  It’s pretty cliche. But it’s true, and living this way, with constant uphill battles and tons of loving support in fighting them, makes you think about it in a way that changes your actions.

The more we talked about this past year, the more we realized how blessed we are.  Sans the whole cancer thing, we’ve actually had a lot of fun.  We got married, we traveled some, we added a precious niece to our family, we’ve learned a whole new medical vocabulary, we’ve had a lot of priceless family time and time with friends, and we’ve laughed more this year than we’ve ever laughed. This past year has been crazy and crazy fun.  Sam’s cancer has given us all more motivation to have fun and love like hell.  Maybe getting a little unlucky has made us all realize how lucky we truly are.  Some days we feel robbed, but we’ll spend the rest of our lives making up for this passed year.  Here is a video of some of our favorite pictures from this past year:

This video is proof that Sam does own shirts and occasionally chooses to wear one.

But only sometimes.

Steve Jobs said this in 2005, and it sure rings true in the face of a fight with cancer and midnight E.D. runs:

Because almost everything — all external expectations, all pride, all fear of embarrassment or failure – these things just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart.

We think he’s right, anyway =]

Unless something dramastic happens, we’ll update after the next round is done.  That may be two weeks or it may be more due to delays.  Either way, we’ll see you then.


Leslie and Sam

The Pleurisy Adventure

Thank you everyone who leaves comments for us on our blog, you all lift our spirits and give us something to look forward to.

Guest blog post time! Sam here this week, and that’s right, I’m guest posting on my own blog. I offered to do posting duties this week, and Leslie sprang at the opportunity to take a week off. There was some danger and excitement last week, during what I like to call the Pleurisy Adventure. It was a little rough to get through, but Leslie was singularly wonderful, and friends and family were more kind and helpful than we could ever ask for.

E.D. treatment

It's one kind of adventure, at least

The week after cycle eight was uneventful. I was feeling OK and going to work every day. Near the end of the week (which is usually when my white blood cells counts are lowest and my immune system is weakest) I developed a runny nose and a nasty cough. I didn’t think much of it but Leslie was appropriately concerned.

Fast forward to the next Monday morning at 3:30 AM. I’d been thrashing around and groaning all night, keeping Leslie up. I skidded in to wakefulness and realized I was sweating and it felt like my chest was sore. After some very hazy and halfwitted deliberation (“maybe I’m just hot, I should move some blankets… I probably just pulled a muscle or something in my chest”), I took my temperature and it registered at 100.6. We were off to the hospital.

I'm ready to go, is he ok?!?!

Packing for a stay of unknown length at 3:30 AM while in a state of hurried distress ain’t easy, but we did pretty well. The Emergency Room was empty so we got in right away, and the admitting nurse took my temperature, which was now up to 101.1. He got me a wheelchair and wheeled me over to my room. The nurses and doctors there were all great, and they did some poking X-Raying and questioning, then got me started on antibiotics and medicine for the chest pain, which was now pretty bad.

Doctor Hoot, who did not live up to his name (he didn’t hoot once!) but was a great doctor, was initially worried that I had a blood clot in my lung. He said those are one of the only ways to get a fever that isn’t an infection, which I thought was interesting. He also said that lung blood clots make part of your lung tissue die, which sounded very bad, so I was hoping that wasn’t the situation. After a shift change and getting moved to a different E.R. Room,

(I have to digress here and say that Hospital folks refer to the “Emergency Department” instead of the “Emergency Room.” This means that they talk about the E.D. instead of the E.R., which always makes me think of Erectile Dysfunction. “Emergency Department” may not be as common a term with non-hospital people, but I think the humor of saying things like “the E.D. nurse” outweighs the unfamiliarity, so from now on I’ll say E.D. instead of E.R.)

ahem – getting moved to a different E.D. room, we waited for and eventually got a CT scan on my chest. It showed that I did not have a blood clot. Yay! The doctors settled on a diagnosis of “pleurisy” caused by pneumonia, but they still weren’t sure what kind of infection caused the pneumonia. Pleurisy was a new word for us and it means an inflammation of the outer lining of the lungs. Even now, a week later, they don’t know what caused the pneumonia.

Pleurisy will slow you down

An extended stay in Hotel Vanderbilt

That all took about 12 hours.  It was very distressing and scary. At about 3:00 PM, when we were all sure it wasn’t a blood clot (yay!), I got transported by two EMT’s out of the E.D. to my very own room. Things are a lot quieter up in the normal patient wings of the hospital. We had a succession of wonderful nurses for whom we were very thankful. We are continually amazed by how smart, caring, and competent our doctors and nurses and Vanderbilt are.

Hi Tu!! You'll make a great nurse at Vandy when you graduate =D

For the next three days we were living the high life. Friends and moms brought us delicious meals, nurses got us free grippy socks, and remarkably funny and kind people from the nutrition department brought us trays full of colorful lukewarm inedibility. Towards the end of our stay, I actually got a lot better at ordering from the nutrition department. The key is to think about which foods on the menu take very little expertise to make, and can taste good when served tepid.

I think I'd rather eat the socks

Pleurisy is very painful, but the docs and nurses kept the pain well controlled. On Thursday morning the doctors decided that I could come off my IV pain medication to oral meds. They sent us on our way later that day, and we came home to our two smelly cats and our welcoming bed.

The most important part – Looking back and laughing

Lotsa bumps

We knew that getting from a cancer diagnosis to the end of a successful treatment wouldn’t be easy, and this is just one of the bumps along the way. It was scary at times, and definitely less than comfortable. Having Leslie by my side to comfort me and stick up for me made it easily tolerable though, and even fun. I almost want to go back =) I think I’ve told Leslie I love her more times since we got out of the E.D. than in the year we’ve been married (which was lots of times to start with). She is an amazing woman, I just can’t get over it. Rushing to the hospital in the middle of the night with chest pains helped me realize what I’m really thankful for, and she’s at the top of the list. Mom and Dad, and Kate and Neil, you guys are a fantastic family.

Thank you everyone who reads and leaves a comment, or sends a card in the mail, or sends an email saying Hi. It’s great to hear from you guys, and it sure keeps our spirits up. An extended thank you to our Moms and Tara for coming by the hospital and bringing us cheer and (much, much better) food.

Hopefully I’ll be able to commandeer the blog again soon for another post!


Back a few months ago, when I first saw a bump

This is the story of how I ended up at Vandy, seeing a very nice doctor named Jennifer Halpern about a bump on my shoulder.

In late January of 2011, I looked in the mirror and saw a big bump on my shoulder.  It was right where I’d been hurting for going on two years at that point, right on the point of my right shoulder.  Once every month or two for the last couple of years, usually after some weight lifting or strenuous activity, my shoulder would hurt really badly for a few days.  But the bump was new to me.  I showed it to Leslie, and she agreed that it wasn’t just my terrible memory, the bump was new.

So we made an appointment with an Orthopedics doctor in Franklin named Dr. Cook, and saw him/them about a week later (there are two doctor Cooks in that office, they’re brothers and both Orthopedicists.)  They took some X-Rays of the shoulder bump, with the X-Ray lady making a disapproving noise when she saw my tattoo.

We waited around for the pictures to develop or whatever, then talked to one of the Cook’s about the X-Ray and what was up with my shoulder.  We mentioned that we were on some kind of short term supplemental insurance because I’d just switched jobs, so we wanted to avoid anything expensive like an MRI if possible.  He said that if I could live with it, then why not try some physical therapy.  So we did.

That lasted about six weeks, and at the end of it, my shoulder hurt a lot again for a few days.  The physical therapist looked at it and was like “WOAH that’s a huge bump!” and sent me back on to the Cooks.  They agreed that WOAh that’s a huge bump, and scheduled an MRI.  The results came back and they sent me on over to a fancy doctor at Vanderbilt.