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 25th, 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 24th – 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.

 

 

 

 

 

 

48 thoughts on “Oh so soft and cuddly”

  1. The cockroach analogy is hilarious. Can’t help but keep thinking of images from Kafka’s Metamorphosis, Haha. Great to hear you’re doing well with the recovery, stronger than me as I have hardly done any jogging since a minor ankle injury.

    Liked by 1 person

  2. Wow, Sandi!!! This is what we have been praying and hoping for! I’m so happy — im in tears! The Lord provides! Here’s to a cancer-free Christmas and a NED 2019!!!!

    Liked by 1 person

  3. Sandi, I am rejoicing with you and crying tears of joy. What incredibly wonderful news and present! You are such an inspiration to me and many others. Congratulations!!!

    Liked by 1 person

  4. OMG, this is the best news I’ve gotten this holiday season! I’ve been checking this site throughout the day today as if you could somehow post something and I wouldn’t get my email notification. This is so good! Really good, the tears are running down my face and I’m thrilled about it.

    Liked by 1 person

  5. Oh my gosh, it IS a Christmas Miracle!!! Hooray!! Sandi, you had one heck of a 2018. Let’s try to keep 2019 a little more bland 🙂 So very happy for all this news for you and your family.

    You inspire all of us! We are so very lucky to have a friend like you!

    Liked by 1 person

  6. Also, now that I cried and laughed enough, I have important substantive questions. What are those pins supposed to mean? How many dozens of pens are there in his pocket? Is it even legal for you to run?

    Liked by 1 person

  7. Praise the Lord!!!!! Well done Sandi and Family!!!! You paint such vivid pictures with your words, I can imagine your humor getting you through those tough times. I can’t wait till we can hug you and have a good laugh!!!!!! Merry merry merriest of Christmases ever!

    Liked by 1 person

  8. Best Xmas present ever! My prayers were heard. I hope you continue to feel stronger and continue to feel the love of your community who is cheering for you every step of the way. Enjoy this holiday season with your myriad of loved ones and I wish your mother courage and strength. XO

    Liked by 1 person

  9. Omg the best email ever!!!! So happy to read this I am sorry about your mom and do hope your godfather and crew come up with the best treatment and plan for her too Xo

    Sent from my iPhone

    >

    Liked by 1 person

  10. Woo hoo, love it Sandi! BTW a young close family relative (you might have met them many years ago) is just starting on a very similar journey. I’d love to put you in touch with them but please absolutely feel free to say “No, I’m just trying to keep my head above water myself!”. Happy holidays, you look great!

    Like

  11. I have been thinking about you NON-STOP for weeks, and (not so) patiently waiting for this post. I write this with tears running down my face for the pure joy of knowing you are well and NED. You are so strong, so inspirational. I am proud to call you friend. Happy Holidays, and go wrap those gifts! xoxo

    Liked by 1 person

  12. So happy to receive your uplifting message! Your far-flung fans out here in the Sandi-sphere get anxious to receive news…not to put any pressure on you to “report.” I wish you the happiest of holidays. May all our wishes be granted for full recoveries for you and your mom!

    Liked by 1 person

  13. Iam so glad that your feeling a lot better, you are so lucky to of had sure a community behind you, I feel so sorry for the lady that had no one to pray or make regular visits to her. Sorry to hear that your mom is still fighting Breast Cancer I will let my community know that she still needs our prayers and I will let them know how your doing. I wish you both speedy recovery. Love Jane

    Liked by 1 person

  14. This news is amazing! I am thrilled for you and wish you continued recovery and healing. I am glad you are embraced by your village- you are an incredible person and your spirit is indomitable. With love, Jami

    Liked by 1 person

  15. Sandi, you are SUCH an overachiever in everything you do, including kicking sarcoma’s a**!!! We love you to the moon and back and are beyond thrilled and appreciative of this wonderful news this holiday season. (Still having happy tears despite reading this post the second time.)

    Liked by 1 person

  16. Ah….a miracle! No more chemo….so thankful for you and your family…We actually use a persona call Ned at work :)….Merry Christmas 2018! Thankful to hear about your mom as well. Praise the Lord for His never ending blessing.

    Liked by 1 person

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