1 Year Cancer-versary, A Personal Take

I've put together my thoughts about this year of cancer in a little voice/ picture/ movie combo

https://voicethread.com/share/4559159/

I feel so emotional and personal about this whole business, that words didn't feel sufficient. Still.. there's a transcription below of my basic message for anyone who prefers the written word!

SO!  Here we are. 365 days after my mother was diagnosed with Stage 4 Displaced large blood cell lymphoma with possible central nervous system involvement... It's difficult to even begin to express my gratitude and bewilderment with the events of this past year, but I'm going to try.

My motivation comes from the memories of my first few days coping with the diagnosis. I dived into the black hole of despair that is internet research and tried to emerge with some tangible pieces of advice. It was useful to see graphs on the effectiveness of the drug Rituxin and hear anecdotes about average hospital stays, but I also yearned for something more empathetic and emotional.

What do you do when your mother is diagnosed with a potentially fatal disease? How do you cope with that stress while continuing to start a career? In what way can you serve as a caregiver when you live across the country. Hopefully, by sharing my experiences, I can give some comfort to someone out there dealing with the same crisis or I can help my own community of support understand where we our on this path to a cure and how they can participate.



0) The background!

So lets start at the very beginning. My mother Christine is an over-achiever in every way. She and my father were among the first Americans to study abroad in China after the Cultural Revolution. They gave their children a passion for travel, education, and the world's most disappointing sports team - the New York Mets. She is the type of parent who secretly sews her son a massive quilt comprised of all his old sports jersey and compiles a family cook book for her daughter before she goes to graduate school. To make it clear - she was an inspiration BEFORE the cancer hit.

My mother was diagnosed after 4 months of non-stop migraines, slicing facial nerve pain, and double vision. The doctors at VCU Massey clinic told us that she had a curable disease, but we would have a long path ahead of us. She endured months of the strongest chemo regimens with the support of family members who travelled from all over the US to get her through treatment. A Bone marrow transplant loomed in our future, but since we were unable to locate a match through the national donor registry, Johns Hopkins recommended that we wait and see if we could make it with a very risky half match procedure. So far my mother has spent 9 months lymphoma free and we're anxious to keep that streak going

1) Yeah. This sucksSo first of all, if you are a caregiver or patient facing a new diagnosis, let me validate something for you. YES. THIS SUCKS. This is truly terrible, heart-wrenching, awful, desperate, nasty, news to receive. Lets all take a moment to wallow in the pure horrendousness of this moment... okay. Done?

Now, if I may, I'd also point out, that in some cases... the worst is over. In some small way, it's okay to see the relief that comes along with the anger and sorrow of the initial diagnosis. 

At least for our family, I would say our low point came when my mother was suffering from a seemingly un-diagnosable disease that made it difficult to 1) work 2) talk 3) think and even 4) see. Because our problem had no label I found it difficult to even articulate why I was so upset. So.. my mother has had a migraine for months and has to use an eyepatch to function.... is that reason enough for me to feel worried to distraction?

A useful thing to remember about cancer is that chemotherapy actually is medicine. It can be hard to wrap your head around the fact that the poison that is going to ravage the body of your loved one is anything other than a force of evil, but it really is going to lead to a healthier life. We were immediately reminded of this fact when my mother's migraines disappeared overnight and her eyepatch was set aside only a few weeks after the start of treatment. 


2) Don't worry about losing hairOne thing that REALLY strikes fear into the heart of a new traveler in cancerland is hair loss. It's practically the most unwelcome proof of membership in a club that I could imagine. It was strange sitting in the oncology clinic at VCU before my mother's hair had fallen out, because other patients were clearly trying to determine which person in our group was there for treatment. We even confused doctors!

So yes. It was nice to enjoy that anonymity while it lasted because the truth is that advertising your health status to the world is even worse that the discomforts of a bald head. My mother could hardly care less about her lost locks. She was much more interested in building the world's largest scarf collection. What was MORE painful was the probing stares from strangers and the obvious awkwardness certain social interactions provoked.
If you're wondering about what you should do when you see someone with missing eyelashes and eyebrows, the answer really and sincerely is to act normally. if you need to, concentrate on sending out *good* vibes so patients and families read your moment of shock as a moment of empathy and not of discomfort.


It's not fun to be told to embrace something that can be so marginalizing as baldness.. so I'm not going to go there. I'll only say that in our family's case, it was possible to have fun with pushing the boundaries of beauty. My mother now looks pretty great with a punk rock pixie cut; she proudly sports it with preppy cardigans and some of those signature scarves that have lost their original purpose

3) Some people are going to be awkward

It's an endless refrain on every cancer message board and forum: some people are going to get awkward.You want to believe that your family and friends are different and they won't be alienated by this difficult news, but sadly some will. For me, this was the hardest part of this year of cancer hands. down. It felt very isolating to be in such a different mind space than many of my peers. Add on the fact that many people in their twenties have thankfully not experienced this kind of traumatic event in their lives and you've got a recipe for icy, icy relationships


3a) Moose in the woods

I've been searching for ways to justify this behavior. How do I make sense of this and let it go?  Suddenly, an anecdote came to mind.

On one of my  family's trips to Canada, we decided to take a hike in the forest on Trail A. At the very beginning, a man came running out of the woods and told us "If you go down Trail B, you can see a fully-grown bull moose!"

It was so exciting!  This was the sort of thing we had come to Canada to see. We decided to take Trail B and hike many more miles for the promise of seeing a moose.

As we walked further and further down the trail we passed plenty of people. I looked at each of them expectantly, but none of them mentioned anything about the spectacular creature that was supposedly ahead.  We were all talking about the moose and running ahead to try to see it, but no one informed our clearly obsessed family about the object of our interest.

I then recall turning to my mom with a heavy heart and having the following conversation:

I said "I don't think there's a moose up ahead" She asked me why I would think such I thing.

I told her that If *I* had seen a moose then I would help people out by telling anyone I met on the trail. No one we had passed had said anything, so by my logic we were marching toward nothing.

I still remember my mother's answer. She told me: Just because you would have said something doesn't mean that they would do the same thing under the same circumstances. What's more, it doesn't mean the moose isn't there.

In that moment, we turned a corner and saw a hulking, beautiful moose munching leaves by the side of the trail. It was magnificent!

This is how I'm understanding the awkward silence of friends and family. Just because I would enthusiastically reach out to someone if they were going through something dark doesn't mean that everyone would or even can react in the same way. Also, just because these people didn't say anything, doesn't mean the feelings of empathy (aka the moose) weren't there.

Reaching that conclusion gave me a ton of peace of mind. It also convinced me that it's okay to let these people go.


3b) It ALSO gave me permission to focus on the brilliant and generous acts I experienced from people who were close to me.

* When my fellow TAs were unable to fill in for me, one graduate student commuted for HOURS so she could teach my section and allow me to see my mother before I left for China* My aunts and uncles sent me candy and notes of love that helped me get through October - the month my mother was searching for a bone marrow donor* Friends helped me move, sent me little inside jokes, and organized G chats during difficult weeks. They called and allowed me to talk for hours or organized information I needed for a possible move to Johns Hopkins.* My roommate Andrea and my boyfriend cooked meals for me, listened to me cry, and kept me laughing with hundreds of jokes


4) Closer relationship with your siblings

One person who has done anything BUT become distant is my younger brother Jonathan. He was the one person in the world who probably came the closest to really understanding what I felt. Since we both faced the strange position of having to care for a parent, discuss their health care decisions, and contemplate their end of life choices at such a young age, we started forming a relationship of our own - separate from the foursome of our family. I'll let you in on a secret, Jonathan is a pretty cool guy - a real gentleman who keeps a calm head while getting a great deal accomplished. I'm pretty lucky that I have him as my brother.


5) Nothing is really going to change

At the start of this journey - ugh I try to avoid using that cliched metaphor but I can't always do it - I thought my entire world was going to change. In fact, up until very recently I thought it HAD changed in epic and terrible ways. My innocence was gone, the world was on my shoulders etc etc

Then, during my last week of my trip home to help my mom transition back into the real world - a stranger observed that we must be SO much closer as a family after this ordeal.

My mother and I instinctually agreed... but then we paused and took it back. We were already close as a family. Cancer didn't alter our love of board games, affection with each other, or commitment to honesty and optimism. This one disease is not nearly powerful enough to do all that so from now on... I'm not going to give it that agency.

6) And yet, paradoxically...this will change your life for the better.

What I *will* say is that cancer has profoundly influenced my perspective on life. I feel an entirely new drive to accomplish major things both in terms of my career and my personal life

After months and months of teaching while coping with cancer, I am even more certain that it was what I was meant to do. True, it was hard to lesson plan WHILE planning next quarter's syllabus WHILE worrying about a lack of a bone marrow donor and WHILE grading a stack of drafts. Still I realized that I was energized after class and always felt committed to providing the best education that I could. There's a reason my teaching evals remained so high even during the darkest months - I'm still looking at you October.

More importantly, I've felt compelled to speak out about the toll cancer takes on young adults. The Big C is such a scary concept that sometimes society cannot react appropriately. I personally find that unacceptable and will continue to try to chip away at the stigma of cancer until ALL of my friends and family in treatment feel free to react to the disease in any way THEY feel is appropriate.

of course that fire has also transformed me into a powerful advocate for Be the Match, the Leukemia and Lymphoma Society, and many other charities that help patients and families live with cancer and even thrive.My advice for people who have only just recently joined this community is to try to find all of the gifts that come with such a nasty twist of fate. Your new perspective on the grace and good will of humanity will be a potent motivator as you vanquish cancer!

One year down, folks! With ever scan we get into a safer relationship with survivorship status so we're still thankful for all of your good thoughts. PLEASE let me know if I can help any of you out there dealing with grief, trauma, and stress in ANY way. The vast community of the internet was a valuable tool in my own process and I would love to help anyone else if I could.
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