Oh so soft and cuddly

The eye of the tiger

What I thought recovery was: a few days of misery, a week or so of discomfort, followed by days lounging around in a fuzzy robe in soft focus with good lighting and spa music…and then mostly back to normal.

What it actually was: a long, hard road that entailed a lot of groaning, weeks of not wearing anything that would be typically described as clothes, and spending a lot of time like a cockroach on its back. I used to think it was dumb that cockroaches pawed the air desperately on their backs, but turns out that I did the same thing. Also, guess what – you need abs to do just about anything!

During those cockroach days, I’d sleep. I’d eat. I’d paw the air. If someone would kindly pull me up, I’d walk, hunched over, slowly in circles around the house. Walking around the house in circles can be a little boring, so I listened to a lot of podcasts.

The hardest part was not being able to laugh. When I got a little stronger and could sit up for longer periods of time, I started watching some TV. But I didn’t want to watch anything that was depressing or stressful (you know, missing an adrenal gland and all), so I couldn’t resist watching a few episodes of Crazy Ex-Girlfriend — which resulted in laughing followed by crying from pain. On more than one occasion, family members had to be banished from the room in order to prevent me from popping myself open. I tried my best only to have boring conversations.

Then came the Rocky Balboa days. I started being able to walk outside, for longer and longer distances. I started being able to stand up a little straighter, and raising my arms a little higher. I developed a technique using my legs as levers for getting myself out of bed. I’m still pretty tired, and standing for long periods of time is tough, but healing, I’m told, takes a year.

On November 25^th, almost seven weeks after surgery, I tried my first run. It was so slow – over a 17-minute mile – but it was a comeback run. I might have cried a little. And best of all, I could watch a Trevor Noah comedy special and laugh that all I wanted.

It’s beginning to look a lot like Christmas

I waited to post an update until my next appointment at MD Anderson, since next treatment options were on the agenda. UCSD’s pathology team had done an analysis of my tumor, and determined that they got clear margins. Only 20% of the tumor was dead. But The Godfather had said that more than likely, I was going to have to have more chemo after surgery – to kill off any micro-metastatic disease – disease that we can’t see yet.

When I saw The Godfather, he started with his usual healing hug of course, and then said that he saw on the scan that I had a very pretty surgical site – he showed me on CT image how I had a perfectly symmetrical elliptical shape made out of staples. I guess I was happy about that – good job on internal aesthetics, surgical team!

Then he said that everything on the scan looked perfect. No sign of disease, and I’m healing up well. And – no more chemo.

You guys!!! This is exactly what I wanted for Christmas. It’s a Christmas miracle!!! I’m going to be able to enjoy the holidays without infusions hanging over my head, and getting to keep my Monchichi hair!

Monchichi about to make an appearance at her first public event…getting tired 30 minutes later.

More than PhD, MBA or Mrs…the initials I’ve wanted more than anything are NED — No Evidence of Disease. I am currently NED!!!

Now, this is actually mixed news. It’s good news for me, because I don’t want to have any more chemo. But it does mean that the drugs didn’t work as well as we had hoped (only 20% of the tumor was dead). Which means that if in the future we have to treat it again, we don’t have a silver bullet in hand. But whatever, I’m not going to worry about that now…I have presents to wrap!

Me and The Godfather — those pins hurt patients during the healing hugs. Worth it though!

Going forward, I’ll have CT scans and checkups every 90 days – like a quarterly board meeting – and regular appointments every 4 weeks to flush my port, which we’re keeping in for now.

Speaking of Christmas, my mom has been at MD Anderson getting treated since October. She was initially scheduled for surgery, but a scan upon arrival showed another mass, which negated the benefits of surgery. She’s been having chemo and radiation, which she’s been tolerating reasonably well, and has booked a flight home on December 24^th – just in time for Christmas!

The bright side

The other day, I was standing in line at a store. The woman behind me said that she liked my hair, and asked if there was a reason that I had it that way. It was clear to me that this wasn’t about liking my hair, so I confirmed for her that I had gone through chemotherapy. She said that she had done the same, pulling off her cap, but that she didn’t have the courage to go out without a hat yet. We chatted briefly, and then she asked how I was able to stay so positive. She said that she was cancer-free now, but that she was depressed and feared recurrence and death all the time. She saw a special light, she said, and she was wondering how I managed it.

I was a little taken aback since the only special light I knew of came from the liberal use of moisturizers and a radioactive glow from treatments, but I shared my approach to staying alive, which is to control the things that I can – focusing on mental health, spiritual health, physical fitness, and watching what I eat – and living one day at a time. I don’t think I said anything useful, or anything she didn’t already know, but I gave her my number so that we could stay in touch.

Afterwards, I realized why it is that I’m doing so well. It is because I have been incredibly blessed with a community of friends and family that showed me, day in and day out, what it means to be loved. She didn’t tell anyone about her cancer, and suffered through it alone; I told everyone, and never felt alone. I am fortunate beyond measure to have a husband who loved and cared for me from the pixie and Voldemort days through surgery and now the Monchichi phase. I have a family that is loving and supportive. I have friends who have met my every need and spoiled me with luxuries. I have colleagues who stepped up and delivered when I was a cockroach on my back.

You did this.

I am here and well today because you made sure that I was not forgotten even when I was housebound, and that I felt loved at a time when it would have been easy to fall into despair. You prayed for me, you cried with me, and you fed me.

I read a book recently called Radical Remission, which is a study into thousands of cases of cancer patients who, despite having exhausted their medical options, were able to become cancer-free. These aren’t studies of miracles; on the contrary, there were nine common behaviors that these patients worked very hard at implementing. One of these was having strong social networks – being loved. The Godfather says it’s the secret to why his patients live longer.

There are many terms that people use to describe themselves after treatment: in remission, cancer survivor, cancer thriver…I haven’t yet figured out what’s right for me. For now, I’m just going to say that I’m lucky.