Hello from the other side

When I turned on my phone, it lit up with hundreds of notifications. It wasn’t until today that I could scroll on a phone without feeling nauseous, so I am working my way through all your messages and comments, and just wanted to say thank you — thank your for all your prayers, for your encouragement, for your love and support. I was carried by it all, and it made me feel invincible. And now, after having demonstrated my pee and poo skills (strangely not endorsed on LinkedIn), I have been liberated from the hospital and am recovering at home!

Big Dig recap

You pretty much got the play by play thanks to Sacha during the surgery, but I thought I’d do a quick Q&A here too. Feel free to post any other questions and I’ll answer them!

How do you feel about the outcome of the surgery?

As Richie posted, yay liver!!! Thrilled to have a gall bladder too, and the grossly clear margins are promising. The surprise was learning that the surgeon actually found and removed a 1 cm tumor on my stomach, which he suspects is GIST tumor (pathology needs to confirm). These tumors are even more rare than LMS tumors and occur about 4-6,000 times per year annually in the U.S. But, he said that my prognosis will be primarily determined by the LMS tumor, and that the maybe-GIST has a low likelihood of recurrence particularly when they find it early.

Were you a little scared that you might die?

Yes. Like 5% scared. Sacha said that he was more like 15% scared. I had one meltdown before surgery entitled “I Don’t Want to Die,” where I just needed to put it out there in case anyone was wondering. After that, I might have hugged my family a little tighter, teared up a little more at everyday things, and held off on ordering a few items that were on sale because who would be able to return them if I died, but mostly I was ready to do this.

During the surgery, were you able to astral project and haunt your children at school as you had hoped?

No.

What’s recovery been like so far?

Far worse than the pain was the debilitating nausea, which was constant for the first few days. I wasn’t allowed food or water on days 1 and 2 — and was only allowed to have a mouth swab, which is a small sponge attached to a lollipop stick, every so often. I spent what felt like an eternity shaking, unable to open my eyes, and feeling sick. I did a lot of meditating and praying to pass the time. The narcotics made me really ill (vomiting after having your guts removed: not recommended), and the anti-nausea meds didn’t really help, so I started refusing pain meds.

Since they had operated on my stomach and manhandled my intestines, they wanted to be sure that both were working before allowing me too much food or liquid. Thing is, my digestive system is probably the most efficient thing about me, and I had a chat with it beforehand just to say, hey, step it up soon after surgery — so even though I could feel that peristalsis was starting, no one else could.

Not helping the situation was the fact that we were put in an overflow ICU unit, which was basically a 9×9 room with no windows or bathroom and little room for the bed and equipment. It’s meant for quick interventional radiology procedures — not for long term patient care — and it was so tight that the nurses often had trouble maneuvering around the bed to get to all my tubes. We couldn’t take out my catheter since there wasn’t a bathroom nearby.

Things got a little better when I was able to have tiny sips of water — a cup to last me a day. They were even better once I could have clear liquids (I had a broth which I later confirmed was disgusting, but the first bowl I had tasted divine, in contrast to sucking on a sponge), and was moved into an actual patient room. I continued to feel nauseous since I was getting pumped full of medications on an empty stomach. Please, I begged them, if I could have just one grape, or a slice of banana, I would feel better.

Once I was allowed soft foods, things improved immensely. The nausea was drastically reduced and I started taking IV Tylenol. Now, I just have pain, which in contrast to nausea, is really no big deal (except when I cough — ouch). And of course, being freed from tubes and wires attached to the nine holes they made in my body was a huge relief.

What does your incision look like?

Find the bottom of your sternum. Now start drawing dark purple a line about 1/2 inch thick down to your belly button. Then, make a rounded 45 degree angle toward the right, and go straight all the way to the right hip. Instagram-ready!

What did the tumor look like?

An uncooked pork roast. It completely encapsulated my kidney and part of my inferior vena cava (IVC), so it was impossible to distinguish between organ and tumor. The total length of what they took out was 15 cm. The graft on my IVC is a piece of plastic pipe that looks like the accordion part of a straw. So I guess technically you could say I got plastic surgery.

How long is recovery?

Full recovery apparently takes a year, and I’ll feel about 80% at 6 months. Fatigue is the primary long-term side effect as my body figures out how to work with a couple of missing organs and a grafted inferior vena cava. Oh, and I’m on aspirin for life, to prevent clogging of the graft.

Does it still hurt?

Yes. Especially when I cough.

This is a long post. You must feel great!

Nope. This took me all day to write.

What do you hope happens next?

Since I’m the proud owner of a full gall bladder and 99.5% of a liver, I’m emboldened to ask for more. I pray boldly for the pathology to show no visible cancer left behind. I hope for a miracle that eliminates the need for me to go back on chemotherapy right away. I want to be well enough take full advantage of what a friend described as my membership in the Second Chance Club.

Moving the needle

I had a chat with my surgeon about how to advance LMS research. We don’t have drugs that meaningfully affect the tumors; we don’t understand its causes or why it is so apt to spread.

It sounds like there are three main obstacles: money, people, and collaboration. For instance, he has a lot of data — but he doesn’t have the $40-60K per year to hire an analyst to actually input that data so that he can actually start asking important questions about LMS. Some institutions are reluctant to collaborate and share data with other organizations — something that is critical to a disease as rare as LMS where you’ll never get a big enough concentration of patients to conduct a meaningful trial. So things labor on with poorly constructed, commingled studies.

It seems like there are many solvable things that could at least get us moving in the right direction. So I said that after my belly closes up, we could talk more about ways to push things forward.

The bright side

Let’s start with the obvious: I’m alive. I’m home.

I’m so grateful to my surgical team for doing their best and for not eating Subway sandwiches over my open abdomen despite the very long procedure.

I’m amazed by the nurses who carried me through with I’m imaginable care and grace: the nurse who sat and held my hand at night when I couldn’t even figure out what I needed to feel better. The nurses who came in repeatedly without complaint to move and rearrange tubes so that I could rotate myself in bed just a little. The Mark Zuckerburg doppelganger who advocated for me to get oral potassium pills when the IV infusion burned my veins. The young A-Rod look-alike who happy-danced for my amusement when we found out I was getting a real hospital room. Nurses, I salute you.

My friends and family: you lifted me up to God until he was like, alright, alright, shut up already, she’s gonna be fine. You waited on updates. You sent along encouragement. You took care of my kids. You lit up the world with your positive thoughts and healing energy. Thank you.

I was home after just four days — well before the expected six to ten. I am so thankful to be recovering at home with my three untrained nurses. They’re strong enough to pull me up from a reclined position, and that’s good enough.

It’s been a long time since I’ve been praised and high-fived for passing gas and bowel movements. I’ll take it.

This morning, I got my two teenaged girls to color with me. Check out the coloring skills of a high school sophomore — she made mine look preschool:

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Yesterday, from the hospital window, I saw this sunrise:

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And then from home, I saw this sunset:

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Hello from the other side.

49 thoughts on “Hello from the other side”

  1. Sandi, it’s remarkable how one can handle really tough stuff with such great attitude, optimism and strength. 6- and 12-month timelines are for regular people, does it mean 2-3 months for you? Speedy and painless recovery to you, super-woman!

    Liked by 1 person

  2. Your strength and sense of humor are breathtaking and so uplifting. I’m encouraged and blessed by you and all that God is doing with and through you!

    Liked by 1 person

  3. So relieved, thrilled, amazed and in awe. Will continue to pray for pathology report and next steps. Can’t wait to see you and celebrate together. Until then…doing my own happy dance. For Halloween this year you get to claim Wonder Woman. She may be missing part of her adrenals and kidneys but she is fiercer than ever.

    Liked by 1 person

  4. This is so beautiful Sandi…… May you recover quickly and get stronger every day, with your wonderful husband and beautiful girls by your side.
    with special love from sandy and daryl kronsonxx

    Liked by 1 person

  5. Rooting for you. Praying for you. So thankful you are home. Thank you for spending a whole day typing an update. Don’t watch too much Judge Judy. Glad to hear the “pork roast” is officially out of the oven. Hugs from Paris. Z & W

    Liked by 1 person

  6. Such an incredible journey from such a brave beautiful soul. You will persevere above because of your super strength and amazing support! Blessed & grateful to have you in my life. Sandi I look forward to sharing yoga with you once again you return to strength which I’m positive won’t be too far away ❤️🙏🏼 Lots of love and healing prayers

    Liked by 2 people

  7. So happy to hear the news and to read with your wicked sense of humour of your coming home. We’re rooting for you and hope your recovery breaks the same time records as your home-coming. Much strength to you for the months ahead! Brad, Gabi and Kayla

    Liked by 1 person

  8. Ha! Your beef broth experience made me laugh. It’s like the first hospital breakfast after giving birth; you’re so famished, those scrambled eggs seem like the best eggs you’ve ever eaten. And yet, so very not. Here’s to tasty foods enjoyed at home! ❤️

    Liked by 1 person

  9. Dear Sandi, I am both smiling and crying reading this, moved to tears by good news and your high spirits after this ordeal. So Good to know you are back home in good shape and that it went well! Hugs and bisous to you and your three untrained nurses!

    Liked by 1 person

  10. Great to have you back to continue the update. It’s a great sign that you’ve recovered so quickly. Hopefully you’ll have enough energy soon to receive your visiting “followers”…

    Liked by 1 person

  11. Welcome to the other side! It is so good to read (and “hear” you in my head). I guess you lost one organs, but not the sense of humor. You have no idea how this post made my day. Thank you. Thank you for your friendship, for the example you are giving us every day. We love you!

    Liked by 1 person

  12. Hello, beautiful Sandi! What a wonderful gift you have— I am laughing as tears of joy run down my face! Your words are graceful and poignant, but you have unfailingly used your wit and sass to remind us that you are most certainly going to tackle this recovery in true Sandi style! This world is so much brighter with your light! I am so happy for your news, and remain prayerfully with you as you get back to yourself and recover and heal. Sending you so many good wishes, and love to you and yours. Xxoo

    Liked by 1 person

  13. Thank you for continuing to share your journey with us. You are brave phenomenal woman. Proud to be your friend. Wishing you continued healing and constantly diminishing pain. XO

    Liked by 1 person

  14. Thrilled to hear you are home and inspired by your courage, and as always, impressed with your positivity and creative wit.
    I love you dearly sweet friend.
    I know you will be a beacon of light for so many in this cause. Hugs and love to you and your precious family.
    ❤️🙏⭐️💐💪💄💃🏻🦋🌸🌹🌺🥂🌅

    Liked by 1 person

  15. I’m continually blown away by your strength, courage, grit, wit, humor and grace. So glad to hear the surgery went smoothly and you are home recovering. Thoughts and prayers are with you for your full recovery. You are amazing!

    Liked by 1 person

  16. Yeah for you! Sending you love and prayers for a speedy recovery. Re the coloring, my first grader colors better than me; so you are in good company 🙂 Take care of yourself and keep appreciating those sunrises and sunsets!

    Liked by 1 person

  17. I’m so happy for you. I am so happy that things are so much better. I am so happy that you are alive. I am so happy God made you so funny that you continually make us laugh in the midst of this all. We absolutely love your family. We love you Sandi. And way to get an A+ on peeing and pooing! I knew you were an overachiever in everything but you take that to a new level! We love you!

    Liked by 1 person

  18. Hello yourself! Welcome back! As Charlie Duke said to Neil Armstrong about the scene in mission control after the moon landing, “you got a bunch of guys about to turn blue. We’re breathing again. Thanks a lot.”

    Liked by 1 person

  19. Oh, Sandi…. You made me cry tears of joy this morning. How marvelous, how wonderful, and how grateful to have you back at home without any complications from the major surgery with such positive outcomes. (I know you were suffering from nausea which I agree is actually more painful than pain….) I will join you in being “emboldened to ask for more” to “him who is able to do immeasurably more than all we ask or imagine” with Ephesian 3:20-21.

    Many thanks to you and Sacha for taking your time and energy to keep us posted. We were honored to be part of your journey last week. Lots of love,

    Liked by 1 person

  20. I’m so happy that you are HOME, it’s the best place to recover. When I had surgery in my stomach area, if I needed to cough or get up I’d put a pillow over my stomach and it felt better. Can’t wait for the day I can come to see you. The Carmelites where very excited to hear how your surgery went and that in 4 days you where coming home. Of course we are all still praying for you and will continue to until your complete well. So please take care of yourself and take it one day at a time. Love Jane

    Liked by 1 person

  21. I’m SO thankful you are home!! Praise God that you were surrounded by so much love and prayers before, during, and after surgery! For my surgery, I was at about 10% thoughts of dying. I have 2 more surgeries left so that could change.

    For my upcoming birthday, I’m going to ask for donations to National Leiomyosarcoma (LMS) Foundation (NLMSF) in your honor! WE LOVE YOU, SANDI!! xoxo

    Liked by 1 person

  22. I read this last night and again this morning with chills and happy tears. You, my friend, deserve to ask for more. My sincerest hope is that you never have to suck on a sponge again, that you get the thumbs up on less/no chemo ahead, and that the next few months continue to surprise and delight you in ways you never imagined. Sending virtual hugs until I can give you a real one.

    Liked by 1 person

  23. Sandi, I am beyond thrilled by your speedy recovery so far, and you quick whit makes me laugh out loud. Thanks for making this easier on all of us by keeping it light. We love you so much!!!!!!

    Liked by 1 person

  24. So happy you are home and recovering with the BEST nurses! Your strength and determination are such an inspiration to all of us! Keep on kickin’ butt. Lots of love to you!

    Liked by 1 person

  25. Cancer may have taken your kidney and adrenal gland, but it did not take your inner beauty or strength! Funny how we take peeing, pooing, and moving for granted! Praying for your recovery. So glad you are home! We love you Sandi!

    Liked by 1 person

  26. Although you lost a couple of organs, you did not lose your sense of humor! I’m happy to hear you are recuperating nicely and at home with your family and friends. Keep on, keepin’ on!

    Liked by 1 person

  27. Oh Sandi, of all the amazing parts of this post and how happy and relieved we are to hear the outcome… the plastic surgery part… you had me in tears (tears of relief and your ability to make us all laugh and heal our worry for you)! We hope you continue to feel stronger and stronger each day. When you are up for visitors I would love to come by and give you a big hug! In the meantime, hugs to you, Sacha, and the girls ❤️❤️ p.s. don’t cough!

    Liked by 1 person

  28. I’ll never think of a pork roast the same again. It’s ok – just the nudge needed to go vegetarian. Wishing you a smooth and uneventful recovery filled with food better than hospital broth.

    Liked by 1 person

  29. Sandi! I was just digging through old emails and stumbled across a link to your blog that Linda emailed me in March. I immediately clicked on it to see how you are ….and here’s this amazing update!! Praying for you and your entire family!! Love to you all!!!

    Liked by 1 person

  30. Hi, Sandi. I have been thinking about you and hoping you are continuing to recover with the tenacity, wit, and grace which have become your trademark. Sending you love and prayers, friend.

    Liked by 1 person

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