The thing about science is that it’s full of data and numbers and conclusions and impressed with how incredibly scientific it is right up until the moment that it jumps over some unknown, blurry line and becomes an art. I faced this problem after my round four scans, but I’d really hoped that it was a one-time shot. On Thursday, those hopes were dashed.

Since my last chemo ended on October 26, I have been figuring out how to recover from the destruction that it caused. Sleep? Yes, lots. Exercise? Not really until I’ve gotten more sleep, but sleepy stretchy hot yin yoga is perfect. Travel to amazing places? Yes, but be careful and refer back to the sleep comment. Pills? Yes, folic acid for red blood cells and hair, biotin for hair, vitamin c for general principles, four prescriptions to help protect and heal my damaged immune system and nerves. Work? Yes, after a two-month leave. My main goal was to be completely cancer, if not tumor, -free for my post-round-six-end-of-chemo scans on December 11.

“Your scans are contradicting each other.”
Awesome. Michael grabbed my foot (I was up on the exam table), and my doctor looked stricken.
“Your CT scan shows continued shrinkage, down to 4.7×2.0 from 6.0×2.4…”
Pretty good…35% drop.
“…which implies that your tumor is continuing to heal. But your PET scan shows increased activity but in a really odd way. If it’s still cancerous then your tumor would light up evenly, but if you look at the scan, it almost looks like a barbell. So it could be your thymus, which is right there and doesn’t like chemo…”
No shit, neither do I.
“…it could be a false positive, or it could mean that we didn’t get all of it with chemo.”
Deep breath.
“So I think we should take it out.”
Wait, what?

“You want to remove my tumor?”
“Yes, I want to take it out and chop it up and figure out if there is any cancer left in it anywhere.”
“And if there is?”
“Then radiation and I’ll strongly recommend transplant.”

My brain changed gears without using the clutch and my transmission dropped onto the floor of the exam room. I’ve been through stem cell transplant with my sister. It’s beyond horrible. A month of lock-down on the scary 15th floor of Prentice, definite fertility loss, years to recover if the treatment itself doesn’t kill you.

Whatever my face looked like, it was enough to push my doctor over the edge, and she pulled me into a long hug. Tears rolled down my face as I hugged her back. “I didn’t want to text you the results because I knew you would need this.” She and Michael had some kind of exchange that I ignored, but I’m sure it had information. I just sat, in the warm hug, and cried. Until I had enough space to recognize that Michael’s hand on my ankle was reminding me of his go-to saying: Lydia, wait to worry.

I took a deep breath and sat back. Our relationship slipped back into patient-doctor.
“So, surgery? While he’s in there, can he bathe the area with chemo? I’ve heard that can help.”
“It does, but not in your case. The chemo can be contained in the abdomen, but for you, we would end up doing an incredible amount of damage to your lungs and heart and major veins and various endocrine glands like the thymus because its not a contained space.”
Hmmm……hmmmm…….gah!
“Is he cracking my chest open?”
“No. This surgery is laparoscopic. Just four small cuts around your sternum.”
“Do I have to spend the night?”
“No. This is outpatient surgery unless he nicks your heart or lungs.”
Well, I’ve had a collapsed lung before…I chuckled. “Maybe they can use my old scar for the new chest tube. I’ll suggest to him that if he screws up to screw up with my left lung.”
She didn’t look amused. “I spoke to him this morning and he made space to see you on Tuesday.”
I sobered. “Who is he?”
“The head of thoracic surgery. He used to be the head of thoracic at Mass General.”
Wow, that means he’s probably one of the best thoracic surgeon in the country.
“I’ve been planning on seeing my family for Christmas. Do I need to do this surgery right away?”
“No. This is not the same situation we were in back in June. You could wait a couple weeks if you want.”

When one of my dearest friends cleaned up a few years ago one of her major problems was what to do with all of her free time that she used to spend getting and being wasted. She received some of the best advice I’ve ever heard: “K, just remember the three Ms: meetings, movies, and masturbation.”

So, until I actually have my surgery and they slice and dice the tumor and figure out if I still have cancer, I’ll remember the three Ms. But I’ll replace meetings with perhaps meditation or macaroni.

 

Photo by Ken Treloar on Unsplash

Join the discussion 10 Comments

  • Libby says:

    Lydia,
    Thank you for putting your story out there. I removed a young woman’s thymus last week who also carried a diagnosis of cancer (what type they weren’t quite sure) and saw her go through all of the emotions that surrounded that experience. She was extremely stoic, but her fear of the unknown was hard to watch. She and I (and you) are essentially the same age and while I try to remember to treat all of my patients as I would want to be treated, an occasional reminder of how important that is is a good thing. Please know that I am thinking of you and send tons of positive, healing, hair-growing energy your way.
    Xo Libby

  • Libby says:

    Lydia,
    Thank you for sharing your story. I removed the thymus of a young woman last week who carried a diagnosis of cancer (what type they aren’t quite sure). She and I (and you) are essentially the same age and have much better things to do with our time than fight cancer. I am sorry for all that you have been through, but please know that your blog is being read and appreciated. Thank you for reminding me that my patients are not that different from me and that all deserve to be treated as such. I’ll be sending positive, healing, hair-growing vibes to Chicago for you.
    Take care, Libby

  • Jamie Reed says:

    Lydia, you are a very brave person and an amazing writer. I am so sorry about your latest news, but hang in there. If anyone can beat this, it seems it will be you, with your amazing strength, support system and ability to put all of the horror of it into a simple text. I admire your ability to deal with this so well.

    I am Harper Reed’s mom.

    Have a wonderful time during this holiday season with your family. Positive thoughts will be heading your way.

  • Margaux says:

    Fingers and toes crossed. Prayers every day. And a Christmas wish for cancer free!!!

  • Hi Lydia!
    Been glued to my computer for a while now, reading your blog starting back in July. I had no idea… and I’m so so impressed with you. This is a devastating situation and you are handling it with as much grace as you can muster, plus incredible writing talent. My love and healthy vibes and hair-growing karma goes out to you. Hugs and kisses to you and Michael.

    Joy

  • Momma Mary says:

    I’m still looking forward to a “false positive”. It happens, and that would be great news. Whatever comes, I know you’ll handle it with your own power and strength. Remember, don’t give that power to a (*&(*&*tumor. I love you and look forward to hugs next week. M

  • Margaux says:

    I went to a new church today, lit three candles and made a wish for you!! Hope you are doing well. Sending positive thoughts your way.

  • Sandia Slaby says:

    Hello Lydia – I, too, just jumped on here, & have been reading your writings back from July for more than an hour. Spoke with Bruce/Jeani/David tonight & heard of your blog. Thanks for letting us (readers) in on this most personal experience. Without such sharing, we all stay clueless & then tragically experience such a sense of alone-ness if/when anything similar comes our way. I thank you & will hold you closer to my heart as I imagine you facing this next series of decisions & information. Indeed, my visualizations are aligned with your hopes!

    I hope your time with your family is being rich. (Hi to Michael.)
    Sandia

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.