One Day Left

One last treatment left and it couldn’t come soon enough. The side effects from radiation are in full swing and Sandy is dealing with almost constant nausea as well as pain in her esophagus and back. This affects her appetite, makes it difficult to swallow and, oddly, creates frequent hiccups. The hiccups are common and there is nothing they can do for it. It's just odd to Sandy to be getting them all the time. Insomnia seems to be another side effect. Just one last shot of radiation left to do tomorrow. They tell us that the side effects will lag and may take a couple of weeks to resolve. But there is just one day left. At least then she won’t have to drive downtown every day for treatment and spend hours waiting for five minutes of treatment...and then things can start to get a little better.

Finally -- An Easier Way to Post Comments

You should be able to simply click on the comments icon now and share any of your thoughts. Blogger fixed this feature a while ago and I updated the site to accept comments without requiring you to log in or have a password.

I encourage you to comment early and often!

Pics from New York & Wicked

Clearly, I don't post enough pictures on this blog. Finally, here are a few pics from the trip to NY a few weeks ago. Fortunately, the girls brought their cameras, even if I neglected to bring mine. Sandy rested in the hotel room for a while before the show and while the girls and I walked around Times Square. We saw a few interesting things...and people (Samuel L Jackson and Whoopi Goldberg). Hannah has been to NYC before, but this was Haley's first trip and they both loved it

Happy Birthday! (Larry? Lucy? Lolita? Link?...the Liver)

Radiation Update

I thought I would post a quick update during the course of Sandy’s radiation treatment. This may serve as a bit of an apology to Sandy, as well. She didn’t like my calling this treatment “no big deal.” For the record, I think my actual words were something closer to, “…no big deal…compared to what she has already been through.” Either way, I probably understated it.

Today was her eighth session, which leaves only three left to go. Those will be Monday, Tuesday, and Wednesday next week. Sandy has been grateful to have a few friends drive her down to Hopkins for the treatment on most days. I think she just enjoys the (perfectly valid) excuse to go out to lunch afterwards. So far, they have hit restaurants in Greektown (Samo’s several times), Canton, and Mt. Washington—and those are only the ones that I am aware of.

Apparently, I underestimated how difficult this treatment would be…or I simply understated it. The radiation itself seems okay, though it is producing the fatigue that it commonly does. The part that I did not consider very well was the impact that all the manipulation of her head and spine would have on her. Those areas remain very sore, despite her vastly improved range of motion. They first extend and then position her head and neck in a particular fashion. They fix this position by strapping her in to a custom molded facemask and a contraption that is intended to hold her body perfectly still. All that manipulation has created some real soreness in her head and neck.

So, when I said that radiation would be “no big deal,” I guess I hadn’t thought it through very well!


Final thought to consider: If a man is completely alone in a forest—and a tree falls—is he still wrong?

Celebrating One Great Year

It is difficult to not reflect when you reach a milestone like this.

It is amazing to think about what has transpired over the last year. It was a year ago today that Sandy had the transplant (and Whipple—I don’t want to undersell the magnitude). Actually, it started on Valentine’s Day and ended today. Either way you look at it, here we are one wonderful year later.

Over the last year, Sandy suffered the pains of major surgery, the complications of an ornery, leaking pancreas, the discomfort of being in a hospital bed for a month, then being bedridden at home for weeks. Think about it—she didn’t even get to enjoy the food at Hopkins! Further, she endured the inconvenience of feeding from a TPN bag (Anna Nicole...rest her soul), a long and difficult physical rehabilitation, subsequent chemotherapy, a little kooky hair loss, and later, recurrence of the cancer, progression to her lungs and then into her spine, followed by spine surgery and reconstruction six weeks ago, and another physical rehabilitation effort that continues today. And medication. Lots of medications.

Fortunately, attendant with all the pain and discomfort, have been trips to the Jersey shore with friends, the annual summer pilgrimage to Bay Harbor, Michigan, to dozens of lacrosse fields across too many states to list here, swimming pools in and out of town, and gymnastics meets everywhere. And the practices. The practices never stop. During some seasons in this year, the girls combined for fifteen practices during each week (the low water mark was nine during a short period in August). Sandy squeezed in a few trips to the boat last summer and fall, a trip to the US Open with friends, a great birthday celebration (she’s 44, for those who are counting), numerous visits from family and friends, holidays with family here at home, and most recently, a trip to New York with the girls to see Wicked. The girls are still talking about it. And yes, it was Wicked Good.

A year is a pretty big milestone in the transplant community. It marks a time at which risk of rejection drops considerably. It marks a time at which survival rates climb. And, it marks a time at which things should be a lot less complicated than they are. Even with all the complications, the year doesn’t seem so bad.


On a side note: After seeing a little bit of the schedule, do you still wonder why I haven’t rebuilt the portico during this year?!?!?!? I swear, it’s because of the restrictions we’re under as a National Historic District (variances, variances, variances).
For those who don’t know, it was further damaged in a wind storm while Sandy was in the hospital a year ago. At least the rot held up in the high winds and you can't see duct tape. Who am I to mess with that?

Experience is What You Get When You Don't Get What You Want

From the last lecture of Randy Pausch, Carnegie-Mellon, titled Achieving Your Childhood Dreams

If you are not familiar with the "last lecture" series, a number of schools have used it. Professors prepare as if it were their final lecture, an opportunity to share whatever it is they would want to share if they found themselves with only one, final chance to share it before they die. Randy Pausch was diagnosed with pancreatic cancer and was told that he had 3-6 months to live. This was his final lecture, delivered September 18, 2007.

This is not about Sandy, but it hits home. I hope it is as compelling to you as it is to me.

Click here for the complete lecture from Carnegie-Mellon (it is SO worth the 76:26):
http://www.youtube.com/watch?v=ji5_MqicxSo&feature=related

Click here for the Wall Street Journal Video on You Tube (5:00):
http://www.youtube.com/watch?v=ZQtwEKlUutA

An Update You Will Get!

I promised an update and an update you will get!

Over the last month, I have been impressed by how rapidly Sandy has recovered from the spine surgery. She still has pain and discomfort in her back and neck, but has regained much mobility and is generally “functional.” Still a little delicate, but functional. She started driving again last week and even made it out to get her hair done and to a couple of social events this weekend. I think she has more discomfort than she admits, but the progress is terrific.

We met with doctors on Friday, in part to discuss a course of radiation treatment for her spine. We agreed on a regimen that includes radiation applied to the areas where cancer was in her spine with some margin outside of that area to be aggressive. She will start this week, perhaps Wednesday, and will undergo radiation treatments once a day for ten days. It sounds dramatic, but radiation like this is not a big deal, particularly when compared to the other things she has been through. This won’t make her sick or cause pain, like chemotherapy does. The good news is that radiation is generally pretty effective, so we are optimistic about both the efficacy and the value in doing this.

One of the other questions people wonder about—and we constantly ask ourselves—what’s happening elsewhere? Aside from this immediate area in the spine, she has not had a scan in a few months. It would seem like a good idea to get another look at her abdomen, lungs, and the rest of her body to make sure we understand what’s going on the best that we can.

Thanks for checking in and for your patience between postings!

People Will Give You Clues if You Pay Attention

I had a friend in college named Sue, who had a wandering eye. Most of us call that “lazy eye.” Sue was fortunate that certain exercises and physical therapy could straighten it out and her eyes would appear normally aligned. The normal alignment was only temporary, but could last for weeks or even a couple of months. I remember she said that she could not tell when her eye started to wander because her vision remained normal. Fortunately, she would notice that, during conversations, her friends would start looking over their own shoulders periodically, as though someone were approaching from behind. This would be her indication that it was time to go back to physical therapy to get the eye straightened out.

I guess the point of this story is that people will usually give you clues, if you pay attention.

This reminds me of this blog. Fortunately for me, if I let it go too long, I get clues from others, as well. I get emails from people asking questions and worrying about the fact that there has been no update. They are all reasonable questions, of course. The emails started early last week and here I am finally getting some words down. Don’t worry—I’m cool with the emails and no one ever offends. Hopefully, you have figured out by now that I am pretty unflappable with this issue.

First, I’ll explain why I have not posted any updates in exactly a month. For starters, I didn’t even realize that it had already been a month…and I’ve been really busy with work…and traveling a lot… and the kids schedules have been incredibly difficult… and I didn’t bring my laptop with me on the skiing boondoggle in Utah--

Oops. I just totally lost credibility on the claim that I’ve been too busy.

And now I have run out of time to type an update, for now. Check back. We have an appointment with Sandy's radiation oncologist this afternoon and I will try to get something meaningful posted soon.

And yes, the skiing was great.