Lessons


General Lessons

In contrast to the dualities theme, which helped my understanding of what I was going through and how I was reacting – and should react – to my mantle cell lymphoma treatment, a number of longer-term themes or general lessons kept coming back. These gelled quite early, about a month or so, and I kept coming back to these as my markers, during good days and bad, as what I wanted to take away for the future. Thinking and reflecting about these during treatment, and having these to refer to in the future, is my way to ensure that I continue to reflect on what is significant as I return to normalcy, my ‘new normal’ rather than the old.

While my relapse changed the objective from keeping in mind the important things during my return to normalcy, my perspective has remained, at least so far, remarkably consistent with the initial gelling of thoughts almost some two years ago.

Time changes

Mortality becomes more imminent, no matter how good – or bad – the prognosis. How to use one’s time – in the short, medium, and longer term becomes more important. Work-life balance is not just a daily, weekly or monthly matter, but also in terms of years. What one does in all spheres of life, and the respective balance, becomes crucial, and requires reflection.

Of particular reflection was how the focus shifted from short and medium-term work-life balance questions to longer-term almost existentialist questions. The question of mortality made me reflect that I will not live into my eighties unlike my parents – even making it to my sixties is a stretch. Given a likely shorter life span, what did that mean in terms of retirement plans (earlier, rather than later), and how I wanted to spend my time, and doing what and for what? I continue to reflect upon this, and keep on coming back to this on a regular basis. Relapse, of course, further focused the issue, placing me on long-term disability, likely until close to retirement, marking the end of my professional career.

People became the focus, in all spheres

One appreciates who truly cares, who is important, and which relationships will become stronger and which will not. Some of my friendships became much closer, some withered away. But one is also much more conscious of the need in general to focus on people, what drives them, what motivates them, in order to ensure that one can relate on a deeper personal basis.

One no longer takes people for granted. Consciously, I organized my time to have more ‘being there’ time with family and friends. Walks were my favourite way of doing this, as I find I am more engaged when walking and talking than sitting and talking. The daily walks with my wife, in particular, were the key moments for us together to talk things through, as well as just enjoy being together.

And of course, I am more aware of what other people are, or may be, going through, and recognize my responsibility to provide them support when they need it. Looking back in the past, I am not sure that I may have provided enough support in some cases; now, having known how important such support is, I will be all the more conscious of the need to make the effort.

I started sharing articles that helped other people have a better sense of what to say or do to a person in my situation. What to Say to Someone who is Sick and A Doctor’s Letter to a Patient with Newly Diagnosed Cancer were particularly powerful articles that people commented and reflected upon.

Sharing

People emphasis is about sharing. Sharing what you are going through, being open and creating space for others to share. And not just in the immediate focus on cancer, but always keeping this in mind and creating this space. It changes discussions from the mere content and transactions, to a deeper connection, one that helps on both the personal and professional levels.

My emails, updates and then the blog became deeper in focus to strengthen the connection with people, and there was almost a conscious effort to ‘ratchet’ up the tone and depth of the updates. Many people responded in turn, further strengthening and deepening our relationship. Post-relapse, the tone and depth sharpened further, and my blog entries became about twice as long on average as before, reflecting how I was exploring and sharing more.

Count your blessings

My Aunt Myrra, who had a hard life, always said count your blessings. It irritated me at the time but being older and wiser (I hope), it resonates. Materially, I had a very supportive employer with generous sick leave provisions, a good medical plan, and then post-relapse a good long-term disability plan, which meant I could take the needed time off work without financial implications.

The strong emotional support of family, friends and colleagues, a very comfortable lifestyle compared to most people, and the insights and reflection that come from having cancer all contribute to these blessings. And good days, and the majority of the days were good days, were also blessings, to be valued and to be used well.

Be in the moment

Time, People, and Sharing require you to be in the moment. At the same time, planning and creating moments, and space, gives meaning to the moment. At a time when you have ups and downs in your treatment, one quickly knows when one will be in a ‘this too shall pass’ moment, and moments when one’s health and mental state will allow one to enjoy and be enthusiastic.

Given that my first part of the journey was a mix of boxing rounds (knocked down only to get up again) or a roller coaster (choose your metaphor), planning for the moments when one would feel better helped one take advantage of those moments. This would largely revolve around people, timing our son’s visits from Toronto, seeing friends and colleagues, going out to movies and restaurants when my immunity allowed.  This really helped put into perspective the ‘this too shall pass’ moments.

Taking advantage of the break between the ‘salvage’ chemo and the stem cell transplant for a Paris getaway was another example. Of course, this break was different in character, less of a “this too shall pass” and more of “enjoy when you can” given what lied ahead.

Do something to the extent that your condition and feelings allow. In my case, focus of time was daily walks with my wife, 2-3 hours many days, which as noted earlier, was wonderful and necessary connecting time with her. The physical activity was secondary. I watched relatively little TV or videos to my surprise, and read more – and shared my reading list with friends and colleagues who both appreciated the suggestions – not without some jealousy about my ‘chemo sabbatical’. And doing some of the things one never has time to do – organizing family photos, videos, family tree and the like provided another family centered focus.

My updates and blog engaged me in reflection about what I was and continue to go through, gave me a sense of how people reacted to my thoughts, and provided me also with an opportunity to learn about blogging. And while away from the office, and then subsequently no longer able to return, I tried to provide some coaching and mentoring to my replacements, while ensuring they had the space to grow and develop.

Attitude

All of these lessons – and the dualities framework – helped give me the needed positive attitude to get through the lymphoma treatment the first time round and the much harder challenge of relapse and an allogeneic stem cell transplant.  While there are always ‘dark thoughts’ in the background (darkest at relapse, gradually receding post allo SCT as time and risk passes), these are normal and manageable and do not overwhelm me or plunge me into depression, and help my family also deal with their own ‘dark thoughts’ without ignoring them.

Following the first round of treatments, I had the challenge of reintegrating into the workplace and my normal busy life. In the short-term, these lessons, and the accompanying background anxiety of whether the treatment had worked, were part and parcel of me.

I never really made it to the medium-term challenge of ensuring that these lessons continued to be lived in my day-to-day existence, whether at home or at work given the short period of remission. However, having written them down and shared them through the blog, I was able to come back to them periodically. And of course many of the readers who know me, starting with my family, occasionally reminded me when I appeared to stray!

These helped ground me after my relapse, and help me get through the allo SCT and risky recovery period. As these painful memories hopefully continue to recede, these lessons remain important markets as I get on with my ‘new normal’.

10 thoughts on “Lessons

  1. Pingback: Week 20 – Getting Ready « My Lymphoma Journey

  2. Thinking of you today. Heard you’re back at work (since my cubicle mate just sent your office documents) and glad of it, since that means you must be feeling stronger.

  3. I just discovered your blog and am learning from it. I was diagnosed with extremely aggressive, bulky, NHL in December 2010 that we learned later is Mantle Cell. I am now having to decide whether to get the High Dose Chemo with Autologous Stem Cell Rescue. I gather you had that procedure? what is your understanding of how helpful it is, what does it buy you?
    See my blog at bevhunter.com

    • Hi Bev,
      Thanks for your email and happy that you are finding my blog helpful. I also checked out your blog to better understand your situation (and I also learned from you as well).
      I did have R Hyper-CVAD protocol with Autologous SCT. It is what is recommended for someone of my age and condition. I had a great recovery and was pretty well back to normal with somewhat less energy (normal given what my body has been through). However, in the past month, I have had a relapse with some cross-over to the nervous system and thus will be back Sunday at the hospital for some chemo to provide some short term stabilization before looking at longer term options.
      So in the end, do not know whether SCT made a difference as the relapse happened less than 18 months after it. I think you are wise to check a number of doctors (as you are doing); we did the same and all recommended this treatment.
      With MCL, it is always unpredictable, as well as being aggressive. My general thought is to take as aggressive a treatment as is appropriate for you and your body, keep up a hospital and related routines (thought you have a good one), and savour those moments when you can.
      Best wishes, Andrew

  4. What is the name of the beautiful music? I do research in the filed of Music Therapy.I play the piano and the guitar and am in love with this song. It is also so very appropriate as background music accompaning the blog. It has a melencholic feeling to it as well as a sense of a fighting spirit.

  5. Thank you for your quick response. How did you choose this particular music for your blog. It is so appropo. Melencholic themes intertwined with the tension of survival. i’m going to try and get the sheet music online.
    Hope you are feeling well.

    Elizabeth

  6. I already ordered the sheet music from sheet music plus. I will check out the translation. Althought I don’t speak Spanish-this is what the words might convey. It sounds like a love song-a pleading of some sort-now I’m going to find out and let you know what I think. The song can be heard on You Tube with Mercedes Sosa singing. I’m listening it to as I write to you. It has such a sad overtone. After the first stanzas it picks up in rythmn and feeling as though the words carry with them an intent of begging and then changes to acceptance. This is what the music says to me.

    Elizabeth
    elperles612@aol.com

  7. Just read the translation. It was a love song of sorts in which the poet is thankful for all that life has given-happy/sad. What a beautiful sentiment-and the music expresses these thoughts so well.
    Thank you for telling me to see the translation. I want to learn to play and sing it in Spanish.

    Elizabeth

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