Wednesday, March 20, 2013

10 Things I've Learned from Cancer

We are always learning. Sometimes more so than other times.

Nearly two years ago, I was diagnosed with cancer -- follicular Non-Hodgkin Lymphoma (or FL) to be specific. Until then, I thought I knew about cancer - having spent several years working as a director of editorial and creative services at Dana-Farber Cancer Institute in Boston. I met with cancer patients; worked with them closely on some projects; I walked the floors of the clinics; I edited stories about research advances; I was surrounded by cancer.

I knew nothing.

I spent more than a year watching and waiting. I spent six months undergoing a chemotherapy regimen known as BR (bendamustine and rituxan). It was comparatively mild -- both in terms of its side effects and its disruption to my daily life. I worked through it - literally, taking a day or so off each month to manage. I've had friends and colleagues spend two years in treatment; friends deal with surgeries, radiation, the works. And then when that was done, even more. What I had to go through was mild. But cancer's effects are not rated like buffalo wings -- mild, hot, and extra hot. Yes, there are different kinds, and some more serious than others, but any degree of cancer is hot enough. And any diagnosis carries its own challenges.

In March, I had my post-treatment scans, which came with the good news that I am now no longer in treatment. I watch, and I wait for my lymphoma to return, and when it does, we'll deal with it. In the meantime, here's what cancer's taught me.

1. Friends matter. They say it takes a crisis for you to know who your real friends are. I don't know that I believe that. I know who my real friends are; I knew that before I was diagnosed. Some of them were great at expressing their concern; some weren't. The fact that they weren't -- because they made stupid comments or ran away from the problem -- doesn't make them less friends; it just makes them poor at dealing with emotions. Who knows why? Maybe it drudges up bad memories, or bad anxieties, or they just are lousy communicators. All I know is that I know who my friends are and I'm grateful to have them and their support -- well expressed or otherwise.

2. I don't know of any study comparing the outcome of pessimistic patients versus optimistic patients or whether either group makes better treatment decisions. But I have to believe the optimists have a better quality of life. I've had my moments of anger, frustration, sadness, fear, and anxiety. I'm sure I'll have more of them. But they've been short-lived -- not because I figured out the answers, but because I realized that those emotions don't subtract from the problems, they add to them. 

3. I've never been big on prayer in the formal sense of the word. So it used to bother me when people would say: "I'll pray for you."  It doesn't anymore. Pray. Send positive vibes. Do a random act of kindness. Meditate. Run. Whatever. It all helps. I don't know how. I don't know why. But it does.

4. People who practice oncology - nurses, doctors, assistants, technicians, phlebotomists, schedulers, you name it. They are a cut above. The people who practice it on the 8th floor of Dana-Farber? They're a cut above a cut above. They bring a level of compassion, respect, understanding, and (and this can't be understated) knowledge to what they do that can't be measured.All of this gives you a sense of comfort and trust; two companions constantly needed on this journey.

5. Cancer takes its toll, and it's cumulative. It's not just a giant shock to the system on the day of the diagnosis, but a constant pounding of the shore wave after wave. At times, the waves are small, and the sand holds strong; at other times, they crash violently and leave the landscape changed by their effect. It takes time and energy to reclaim the land .

6.  Patients are just the tip of the iceberg. Family, friends, coworkers, caregivers - everyone is affected in ways small and large. For immediate family, it's doubly difficult. They face not only the impact of the disease and its disruption of daily life, but also the burden of emotional support. 

7.  To borrow from Glennon Meltonwe can do hard things. We can face diagnosis. We can withstand the anxiety; we can manage the treatment. We may not want to do it. But we can.

8. Everyone's cancer is different. There are lots of male, follicular lymphoma patients out there. But are there many 50-year-old follicular lymphoma patients with the exact level of disease progression, with the same health status, the same mental outlook, the same molecular blueprint as me? No. So you can look at statistics and know that they are comprised of sets of cases that are all unique, even if they share some characteristics.

9. It's easy to find daily examples of cruelty and indifference -- just watch the news, read the paper. I've been amazed over the past two years with people's capacity for kindness and compassion. Not just to me but in the stories I've heard from others who have been admitted into this unfortunate cancer club.

10. Bucket lists are overrated. There are thousands of things I'd like to do in life. I could fill pages alone with just the places I want to go - let alone the events and sites that I'd like to see in those places. And that's not even adding in the geographically agnostic experiences I'd like to experience. But to me, life isn't about creating checklists to check off; to me, it's about experiencing what you have, where you are, and who you're with. That doesn't mean I don't want to see Barcelona vs Real Madrid in Barcelona, shag flies in Fenway Park, or sample Thai food in Thailand. I'd love to do all of those and a  thousand other things -- but I'm as excited to watch Noah pitch in Little League. Life's a journey not a to-do list.

27 comments:

  1. This is a great list and I have shared it with The Lymphoma Club! Great blog by the way.

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  2. Just diagnosed a few weeks ago and already your words are 100% true to me. Thanks so much for sharing your experience.

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  3. Excellent piece. All I can say is been there done that. Thanks for saying way better than me.

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  4. Mike...I was diagnosed in 2009 with Folicullar B NHL.I went through RCHOP, nasty stuff. But I did it. I have relapsed after 3 1/2 Yrs. I now am doing a much easier chemo. I agree with you...one day at a time and the bucket list of many things can wait. I'm much better sitting under a willow tree fishing with my grandson. Thanks, Dennis

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  5. Totally agree! Especially #4 as a visitor to the 8th floor at Dana Farber...they are the best of the best. I was so tense expecting the results of my morning PET scan last January and this wonderful woman who checked my vitals noticed...and she said to me "take a deep breath and breathe....we are not giving out bad news today". Just that small gesture made such a huge difference to me. Compassion...understanding...priceless!

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  6. Thanks everyone for the comments! Made my day to connect with some patients. Dennis - best of luck with the new regimen. Hope you get lots of fishing outings in the near future!

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  7. Thank you Michael........I was diagnosed with the same cancer in January of this year and am currently going through RCHOP. The support site has been great, as I have done a lot of soul searching since I was diagnosed. Cancer has impacted so many family members and friend's but it really hits home when you get the news it's you. However, looking through your list we have a lot of similar top 10's. I received great scan results last week and they are reduced my treatments down to two, once of which I finished this past Monday. Thank you for sharing and God Bless with your future health! Jerry Letourneau

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    1. Jerry - that's gret about your scan results. Hope the good news keeps on coming. --michael

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  8. I was diagnosed with follicular lymphoma in 2009 and your blog is my story too..practically everything you said has been my journey to...

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  9. Relate to your top 10 so much - particuarly friends and "the bucket list" just thankful and appreciate life so much more now - many thanks for sharing : )

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  10. Wow this is so true and people think that all you think about is cancer, but it's hard not too, if they could tell us all that it is gone for good I think we would all feel better but with FL they can't tell us that so no wonder we think about it all the time:( I was also told in Oct 2010 that I had it and I was on a watch and wait for 8 months until two more tumors on top of the two I had already with one removed that I would have CHOP chemo so I got scared and went to MD Anderson in Texas, found out I didn't need Chemo I only needed radiation, went through 30 day August 2011 and I feel very fortunate and so far I am 5 months away from my one year mark, no cancer still but I do have a spot on the liver that their watching, now how are we not suppose to worry??? Good luck to everyone and may God be with you all especially you Michael:)I got a second and a third option so make sure you go where they specialize in Lymphoma it so important because you may get treatment you don't need!!!

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  11. Another great post and reflections, Michael. Loved the conclusion - so true.

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  12. Thank you Michael for you post. The Bucket List comment makes a lot of sense to me. I was diagnosed with stage 3 FC-NHL in 2006 when my children were 12 and 16. I was fortunate enough to be included in a trial using a radioactive monoclonal antibody that specifically targeted the follicular cells. I had three years of maint. with Rituxan. This was a walk in the park compared with what so many have been through. I had a couple tired weeks, but then taught through the rest of the tx. The Lymphoma has been in remission since 11/06.

    Since then I have been thrilled to take part in each activity and milestone in the lives of my children. I do not need a bucket list. I live it each day.

    Mary

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  13. I had a feeling this post would generate a lot of comments, Michael -- it's excellent. In fact, I've been reading lists like this for 14 years and it's one of the best I've come across (and I would say that even if you were not above me on the org chart). My two favorites are No. 8 and No. 10. Oh yeah, if you want to shag flies at Fenway, there is always Fantasy Day....that's on my list too!

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    1. Thanks Saul... I was thinking of Fantasy Day when I wrote that!

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  14. This is awesome. I couldn't wait to read it! Keep them coming...they are therapeutic to all of us!

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  15. This is excellent, really just excellent. As I read each point, I would nod my head in agreement. Sharing this on Twitter right now!

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  16. Great blog post!
    Can we share notes lol? I have a cancer blog: www.copingwiththebigc.blogspot.co.uk
    Please pop by and let me know what you think? X

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  17. Thanks Becki. Will check out your blog, too!

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  19. Wow all so true!! I have learned your top ten through my 10 year journey with follicular lymphoma. Diagnosed in 2003 and also treated at Dana Farber.
    Thanks for sharing this!!
    So happy your scans were clean!

    Donna
    Fnhl survivor

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    1. Thanks Donna. Hope to keep on learning for many years.

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  20. Cancer is one of the dangerous disease.But can be curable if its symptoms foung in its early stages.Thank you for giving this information.
    Regards:oncology hospital india

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  21. I share your sentiments in #3. I too was at first perturbed when people offered to pray for me, but that was just their way of sending me positive energy and thinking about it. I appreciated every prayer!
    Love your blog, glad to have found it.
    Fellow NHL survivor,
    Stephanie

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    1. Thanks Stephanie. Glad you found the blog too.

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