The Space Between

The purpose of my blog and entries is multifaceted. Some are designed to entertain, while others focus on education and enlightenment for those suffering from cancer and the people who surround them. Others are simply updates on my disease for family and friends.

I don’t consider myself an optimist or pessimist, but rather a realist. Accordingly, I prefer to let the facts in my blog speak for themselves and let you, the reader, decide if the glass is half full or half empty.

For me, life is usually viewed in absolutes. Things are either black or white; rarely, if ever, shades of gray. And I like it this way…nice and neat. This is probably why uncertainty, which falls into the shades of gray zone, doesn’t sit well with me. Unfortunately, living with a terminal cancer diagnosis introduces a fair amount of uncertainty – almost from day one.

It starts with waiting for the initial diagnosis. Is it cancer or not? Usually this is a black or white analysis. The diagnosis of cancer then leads to a myriad of uncertainties. The patient wants to know details about the treatment options, their side effects and quality of life, and whether the potential for cure exists. Lots of gray zone issues suddenly appear.

Although clearly outside of my comfort zone, I’ve been able to successfully navigate the sea of uncertainties for the past two years with one notable exception: how much time do I have remaining? Or at the very least, how much time remaining where my quality of life allows me to function as a productive member of society?

Right now, life isn’t horrible. Sure, I suffer side effects from weekly chemotherapy treatment, such as loss of appetite and fatigue. And I lost my hair but save a ton of money on haircuts and shampoo. Nevertheless, I’m able to enjoy time with family and friends and keep busy with my mission to help raise awareness of the human papillomavirus (HPV), six cancers that are directly linked to HPV, and the available vaccines that could prevent such cancers for others in the future.

Enduring weekly chemotherapy is made easier given the fact that my tumors decreased in size according to my last imaging procedure. Exactly what the tumor regression means in terms of extending my life is unknown. Reality check – published scientific literature still favors that celebrating the New Year isn’t a likely event for me.

However, every patient is different – and there is one absolute truth in life: no one knows exactly when or how they will die. While perhaps the exception versus the norm, we’ve all heard dramatic stories about people living longer than originally expected. My realist nature makes me reject such anecdotes, but it does allow me to consider the fact that progress in treating cancer is advancing at a rapid pace and perhaps my existing treatments will buy me just enough time to receive some new exciting approach that keeps my disease in check.

In the interim, my greatest challenge is what to do with the “space between.” I’m talking about the period between now and when I eventually die, which could be measured in as little as one, two, or three months or as many as several years. No one knows for sure.

For example, I could start to write a new book. Although having recently gone through that process, it is a tremendous investment of time and focus away from spending quality time with family and friends. While it could be a worthwhile sacrifice, I just couldn’t bear the thought of embarking down that road again without knowing that I had sufficient time to finish it.

My other passion, photography, is made challenging since I really don’t know how much energy or how I’m going to be feeling on any given day. This makes scheduling photo sessions weeks in advance to allow adequate preparation time a risky proposition at best. For example, I never could have predicted ending up in the hospital on three separate occasions in July/August (including a trip to the intensive care unit). While life has been quite calm as of late (thank goodness…) there is always the chance that something else is lurking around the corner.

Besides, I was already able to complete two significant bucket-list items this year with the publication of both my memoir A Walk with Purpose and large format, high-quality, coffee table photography book, Strength, Confidence, & Beauty. In the near future, could I really top what I’ve already accomplished in each area?

Equally important to projects that produce legacy materials of a life well-lived, there is that pesky task of providing income to help support my family. I haven’t quite found an appropriate place on my resume for “terminal cancer patient” and I suspect few employers would find that an attractive attribute. On the flip side, freelance work or part-time positions might be workable solutions.

Don’t get me wrong, I’m not laying on the couch every day pondering the “space between” and wallowing in depression. I’ve been keeping plenty busy promoting my books and taking advantage of the plethora of amazing media outlets that express an interest in helping me with my HPV awareness mission. Perhaps that is simply how I’m meant to fill the space between?

At first, I thought if I could simply touch one person’s life through my efforts then I made a difference. But I’ve been inundated with messages from family, friends, and complete strangers who share personal stories about having their children vaccinated for HPV as a direct result of my efforts. Is there anything else I could do that would be as gratifying?

If you or a loved one is affected by cancer, I’d love to hear how you deal with the space between. Rather than messaging me directly, please feel free to comment on this post so that others can benefit from your shared experience.

10 thoughts on “The Space Between

  1. Dealing with that space is a real challenge. While my wife was still alive (she died from metastatic melanoma last summer, about two years after diagnosis), she basically just went on as though there was no doubt she’d make it. She just lived her life. It was only at the very end (about two or three weeks before her death and over a month after entering hospice) that she really believed/accepted that she was going to die. And even then, she did what she did until almost the very end.

    It has been a tougher challenge for me since her death. I’m only in my early 40’s and that’s a LOT of future to space to fill that I thought would be spent with her. And one of the hardest things is getting past the “why bother?” I wonder how much this affects those with cancer – “Why bother” doing this or that if the end is pretty much known and only the timing has yet to be decided?

    • Stephen – First, very sorry to hear about your loss. Your wife sounds like she was a pretty amazing woman. Second, thank you for pointing out that you as a surviving spouse also have to deal with a similar “space between” issue. You’re young and have your whole life ahead, so you have a lot of options to pursue what you care about. Personally, I don’t ever think “why bother.” If I can make a positive contribution to this world, no matter how big or small, then the pursuit is worthwhile. Hopefully you can find comfort and motivation in doing something that honors the memory of your wife and/or is important to you. Again, very sorry for what you have gone through and thank you so much for sharing.

  2. Michael, firstly, thanks so much for the copy of your book given to me by Monica Taylor yesterday. I read it cover to cover on my plane ride home to Phoenix from Bethesda yesterday. What an amazing accomplishment!

    Second, to comment on “the space between.” I love gray, I am a lawyer and nothing in the law is black and white, that is what makes it so fun. You ask how cancer patients are to deal with the space between. But think about it, everyone has to answer that question. Days are guaranteed to no one, my healthy as a horse spouse could die on the freeway tomorrow, and stage 4 terminally ill me could outlive him by months or years. Terminally ill or healthy, no one controls when they arrive or leave the planet. So we are all living in the space between. I choose to live it with joy and gratitude for each day, good or challenging. Every time I feel the least bit sad, I meet or read about someone with much greater challenges than I have and I am full of gratitude for the wonderful crazy life I have had. I never worry about how much space is in between, like most other humans I just want that space to be full of life, whatever that brings…

    • Kim – so very nice to “meet” you. I’m glad you read my book (and please do leave an honest review on Amazon, as it is self-published and reader reviews are important). With regard to the space between, I don’t worry about how much time is left as much as trying to be as productive and feeling gratified by what I do during this period – how ever short or long a time that may be. I have always lived my life to the fullest, so I have no regrets. And you’re absolutely correct – cancer or not, no one is guaranteed to live until they are 90 or 100. Everyone should cherish each day! Thank you so much for the follow-up and best wishes to you!

  3. Dealing with that space is a challenge. I also have metastatic cancer and am going through weekly chemo to try and keep it in check. Quality of life has suffered while on these drugs but I’m still on two feet and am able to work and enjoy times with my family. I find that I’m pretty much just trying to live life as I would have if I didn’t have terminal cancer. I often think that I should be doing something to leave more of a legacy for my young kids but I’m not quite sure how to do that. I work to give my family income and savings but it also serves as a good distraction from the disease. I often feel like I should be doing something more monumental with the time I have left but I struggle to know what that may be.

    Thanks for your blog Michael. I enjoy your posts.

    • Mike – Thank you for sharing. I certainly understand the desire to leave a legacy for your children. However, just remember that sometimes that legacy can be as simple as providing them with memories of your time together. If they are too young, take photos or videos of your adventures. You could then make an album or video as a legacy. Just some thoughts. In any event, best wishes to you and yours and thank you again for sharing your thoughts!

  4. My “space between” issue is wondering what the first PET scan will show post-treatment, and regardless, there will be more scans after that. I have called this period “overtime” — the idea of moving forward vigorously without knowing when the finality will come. Every human is in overtime, of course. I have noticed one change in myself — I like to simply “chill” more. I like collecting records, and I have found myself in record stores more frequently than in the past. However you spend your time Michael I suggest you continue to write — you have a gift.

    • John – Appreciate the reply to my post. In a way, it’s comforting to see how other cancer survivors deal with similar issues. It makes me feel less alone. As much as family and friends are there for me, there is just something unique about talking with fellow patients. The time around each PET scan or other disease update is definitely an issue for most of us. As detailed in my writing, my first such scan was amazing – showing a complete response to treatment. A mere six months later, my world turned upside down by disease that had spread to my lungs. No wonder we are all anxious around these updates! I think your “chill more” attitude will serve you well in this regard, as you are doing your best – going through therapy – and the outcome will be whatever it will be. Clearly I wanted a different result from my second scan, but my approach was “okay, that sucks…but what’s the next step?” Because there are a lot of options (some better than others…) to treat cancer and extend life. And we can endure them all until that point when we feel that we’re no longer “living.” I’ve seen what young kids with cancer go through and it changed my perspective on where I draw the line with my own therapy. If a 5-year old can go through surgery, radiation, chemo, bone marrow transplants, etc. then I sure as heck can suck it up and deal with a little nausea and fatigue. Enjoy life, continue to chill, and find some good vinyl at the record stores! Most importantly, thanks for the kind words about my writing and for sharing your experience here so that others can benefit! Best regards – MDB

  5. We are two weeks before the end of chemo/radiation for the same disease that struck you. I feel like we have been in the gray zone forever, even though it’s been less than a year. We could wallow in the dark side of life, wishing we had known of the vaccine decades ago. But we don’t. Instead, we’re working hard on getting more info out on vaccinating kids. It’s so hard for parents to believe their child will be sexually active one day, hence the resistance. We have the unique gift of being able to use this illness to educate people on what life could be like if you don’t get the vaccine. That will be our legacy and yours. If we can save one kid from fighting this horrible disease, we made the high impact kind of difference with our lives that not many people get to experience. I know Salk probably saved millions from polio. Now we have this scourge with a unique opportunity to stop it before it happens. Facing reality and keeping hope going are struggles to do at the same time while under treatment for this horrible disease. But it’s one disease with a prevention vaccine. Not many of those solutions are around in the cancer arena. Spending some time on leaving kids with a better future than we had is what counts to us. No one controls the cards they are dealt. But for this one disease, there is hope in prevention. Thank you for your focus on prevention, while trying to help those of us in the fight today understand what might happen next, based on your experience. Knowledge is power both in the fight and the challenge to eradicate this terrible disease forever. When we leave this world, there is no more powerful legacy one can expect than to leave the world a better place. With great respect and love, I thank you for this blog.

    • Mary – I always look forward to your comments on this blog! Indeed, it is still amazing to me that the HPV vaccines are shunned be some parents when the effects of the six cancers they prevent are so horrible. At first, I thought we were facing an uphill battle and would never be able to reason with them. But once I saw that our work is simply about educating people – and that many simply “don’t know” the facts – it became clear that we can make a difference. I’ve had family, friends, and complete strangers get their children vaccinated for HPV based on my actions. And I’m not actively preaching or on a crusade, but rather simply laying out the facts and suggesting people have a discussion with their pediatrician who is the best resource for guiding them. Good to hear that you are in the final few weeks of treatment – just know that the side effects get a little rough from this point and even a few weeks after treatment stops, as the effects of chemoradiation continue during this period. But it will get better and you will look back on chemoradiation as a horrible treatment/time, but it is relatively fast and then it is over. And, I hope and pray that the excellent odds for cure work in your favor and that will be the last treatment. Much love and respect right back at ‘ya!

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