You Don’t Have to Find Out You’re Dying to Start Living

I originally wanted to title today’s post, You’re So Vein because my veins have been getting smaller and scarred with each successive stick. Jason, the very skilled nurse that installed my PICC line today now has a certain Carly Simon song of the same name that has effectively embedded itself in his cerebral cortex thanks to yours truly. So, I’m now sporting my shiny new PICC line awaiting chemo and all the other fun-ness that goes along with it. But, I do want to take a serious turn at this point, so don’t mistake my humor for irreverence. If you’ve read anything prior to this post, you know I have a streak of flippant humor that has helped me cope through the seriousness of what it is I’m working through.

I have acute myeloid leukemia – a form of cancer that affects my blood production. The day I was diagnosed, I was given three months to live if the cancer went untreated.  That three month mark is today and I’m very much alive and I feel as good. Today is also the beginning of my third cycle for chemotherapy or what I so affectionately call toxic chemical goodness. I was admitted this afternoon and barring any unforeseen circumstances, I’ll be heading home on Sunday and will resume the waiting game for a bone marrow donor. Because of my relative young age and insistence on keeping physically active, I’ve really been doing rather well.

This is the sixth hospitalization since I found out I had 50% cancerous cells in my bone marrow and was living on borrowed time. Looking back over the past three months, I’ve obviously learned a tremendous amount about cancer and leukemia in particular; I’ve learned a lot about human kindness as well as human nature; and I’ve learned quite a bit about myself.  Looking at yourself through cancer-colored glasses, the pretense falls away and you see yourself for who you are. You also see others much more clearly. The honesty is, in many ways, brutal, but it can be refreshing and bring you peace if you take in the whole picture rather than keeping the focus on yourself. In that way, cancer really is a gift. Just like any gift though, we have to be willing to receive it – accepting both the responsibility as well as the benefit for its ownership. There is no re-gifting of this bad boy.

Cancer has a way of forcing you to confront reality, to see things for what they are. Barriers drop and when smiles come, they tend to the real deal. Pretense and pity find no stronghold and your priorities become pretty apparent. For some, there’s an overwhelming, “why me?” In my case, I’ve found that cancer has intensified my sense of gratitude and even the small things that I had otherwise taken for granted now assume a whole new character and meaning. I can’t say that impending mortality is what drives this heightened awareness, but in the grand scheme of things, it’s fair to say that when faced with a life-threatening illness, there’s an element of time that pulls it out. I’ve said it in different ways in past postings, but in honor of Zach Sobiech, who passed away today at the ripe old age of 18, I’m using his words: “You don’t have to find out you’re dying to start living.”

A friend of mine from Minnesota had posted a music video on Facebook that Zach had made and I used it as my music of the day on my posting on April 3. In the same way I use writing and humor to cope and to express myself, he uses music. I felt an instant connection in that Zach was dealing with a cancer and his attitude was positive and contagious. And that was just from the video clips I saw. In his case, he has a bone cancer called osteosarcoma. I found out the sad news today that he went down today in his fight, but you can be assured that Zach Sobiech did not lose. While he had some very bad days, he had some very good days as well, and from what I could see, his impact was felt far and wide and for an 18 year-old, he leaves an incredible legacy. He fought his battles with such grace and good humor and we could all learn a thing or two from him.

It’s another variation on the theme: “I don’t control life, but I control how I react to it.” It doesn’t mean simply allowing life to happen, but rather living life. I am saddened that Zach’s life was as brief as it was, yet he packed a lot in those eighteen years! I don’t know how many more years I have. I may have a few or I may end up outliving my grandfather’s extraordinary 99 years. Who can say? What I can say is that the years I do have remaining are going to be even more fruitful and extraordinary than the ones I’ve lived; and I’ve done an awful lot.

It doesn’t take a bucket list to do what’s important before we die. It just takes the will to really live. Don’t wait for someone to tell you that you have an expiration date. But don’t take my word for it, listen to the wise-beyond-his-years Zach Sobiech in this video.

 
Click here to see the celebrity video from the song he wrote.  You can see part of it in the video above.

 

Be well, stay strong, and much love to you all.

The Tyranny of the Urgent

Yesterday was a wonderful day.  I got to come home from the hospital nearly two weeks earlier than I was initially told to expect and although I had to work through a little unnecessary drama in getting a new phone number, I had one of my favorite comfort meals of chicken pot pie and smashed taters and then a quiet night *at home*.  I put in a DVD and didn’t get even ten minutes into it before I was sleepy, so I retired about 8:00 and didn’t wake up until my usual 5:30.  I don’t think I’ve had that much uninterrupted sleep in months.  I typically sleep about 5 hours a night and that works for me, but it’s clear I really needed a lot more yesterday…but I feel good (sing it, James Brown!).

Need is the word in that last thought that stands out to me.  We all are battling what Alan Lakein called, The Tyranny of the Urgent, forever giving in to the things that scream at us while ignoring the important. Sometimes, you have to give in to the urgent, but I submit to you that the important is something that trumps the urgent every time and I’ll play my own cancer card here to make the point that you don’t want to wait until you’re in a position where you’re faced with the important to see that the urgent stuff is just chaff and often meaningless bull-pucky. My sister put it rather simply that this time in my life, as disagreeable as it is to me, was meant for me to get off the treadmill for a while. It’s an apt picture, because a treadmill just uses up your energy while getting you nowhere…and that is what the “urgent” does quite literally.

I’d like you to indulge me for two minutes in a quick exercise because it will highlight what’s really important to you and I hope give you an insight into yourself.  More importantly though, I hope it spurs you to action to do something really important without the benefit of toxic chemicals and people in starched white coats smiling at you! There are actually three facets of this exercise, but because I want to cut to the chase, here it is: If you knew that six months from today you would be struck dead, how would you live until then.  Assume all the final arrangements are made and that there are no logistics to be resolved. Take two minutes and brainstorm. Write everything that comes to mind, no matter how frivolous.  At the end of the two minutes, take a look at what you’ve written and you’ll see the things that are the most important to you.  You can clarify things a bit now that you’re not in brainstorm mode, but the essence of what is important shines through. Whether it’s reconciling with friends whom you’ve fallen away from, traveling to a certain spot because it’s always been a dream, completing a project, or whatever, you’ll see the really important things on that list.

So, why wait for a death sentence to do what’s in your heart?

Write out that goal and in the next six months, go DO it. Life is not meant to be existential, it is meant to be lived…and the only thing for certain is the one we have now. Pithy? Cliché? Maybe, but you know it’s true.

I know what’s in my next six months and it still involves a lot of medical stuff, but past that, I can tell you I have a lot of things I want to do and I have a little bucket list of sorts. These things have been on my mind a lot, but even more so now that life has been so defined by blood chemistry.  Here are a few of the things I want to do:

-          In 2014, I want to ride a ‘century’ (100-mile bicycle ride) for the Leukemia-Lymphoma Society; by 2015, I want to be in good enough shape to do another AIDS LifeCycle (545-mile ride from San Francisco to Los Angeles with my Team OC family.

-          I want to climb Mount Kilimanjaro

-          I want to set food on Antarctica and watch the orcas up close

-          I want to tour through Scandinavia

-          I want to lean Spanish and regain my fluency in French…maybe a third language in there by 2020.

There are a lot of things I want to see in my children, grandchildren, and now that I’m back in Utah, my nieces and nephews as well, but some of those things are, of course, hopes. Those are the things we live for vicariously and have less of an impact on, but we can still be there, right? I have great hopes for them all and my heart swells with pride as I see them come into the people they are meant to be. As my children have come into adulthood, I’ve had the opportunity to spend some really good one-on-one time with one of my daughters, both socially and during my first round of chemo where we got to be adults together and learn more about the person rather than the roles we play in each other’s lives. My oldest son is coming out during the transplant process and will be caring for me. He’ll see the best and worst in me and in the process, we’ll get the opportunity to know each other as adults as well. I told him, tongue in-cheek, that at least we won’t be getting drunk and fighting with each other to do it like they do in so many movies! It’ll be a really difficult time for both of us, but in the end, we’ll have the kind of relationship that few fathers and sons have. I’ve watched my oldest nephew morph from an awkward kid on the soccer field into a brilliant aspiring student who is on the verge of a promising career in microbiology. Who knows? He could be the guy who finds the cure to what I’ve got…and his sister is on his coattails. There’s so much promise in the important. And while it perhaps goes without saying that nothing of any importance is ever easy in attaining – especially when the urgent screams in our faces and clouds our vision – it’s all that really matters.

My music video this morning was something I chanced across on Facebook this morning.  The song comes from a guy named Zach Sobiech, who is battling osteosarcoma – a bone cancer – and unfortunately not doing well. His message is timeless and joyful and I hope it resonates with you as much as it does with me.

Be well, stay strong, and much love to you all!