The following is an email I got from Wayne last Monday, 7/23/18.
To my sweet family,
As many of you know just a little over two weeks ago a routine MRI at Upenn discovered a new tumor in my liver, near where the original tumor was discovered and removed. This week KP and I flew to Rochester where I had a biops. . The report back was that the tumor was not malignant. Upon hearing this news my friend Dr. Louise pronounced that I was NED ( no evidence of disease) . I am cleared till my next scan two months from now.
I am sorry it has taken me a few days to report back to you. To be honest, even with this great news, I still felt like I had the wind knocked out of me. I could hardly breath let alone speak or write. Until now. The fog is just beginning to lift around my soul and I desperately want to communicate and connect with all of you
What the Hell Wayne
Its been hard for me to explain how I feel, When I walked into my doctors office two days after my first scan in six months, I was sure it would be good news. I know I had to worry down the line, maybe six months to a year from now. But I had gotten to a place where I was going to declare myself cancer free and shake the anxiety and darkens that comes with this awful diagnosis off and start a new.
But while I was standing in the doorway of the examining room at UPenn hospital, my doctor walked by with a worried look on his face. He than said to me “I’m sorry that you got bad news from the radiologist” That was the first I heard that I was in trouble. The last two weeks have been filled with words I don’t understand, conflicting reports, cancelled flights, cold metal being inserted into my body and waiting.
The reposts and conversation I have had over the past weeks are filled with words I don’t understand The only word I really understood or needed to know was the word “negative.” Here is a sample
I) Upenn, July 3, 2018
LIVER: Normal in size and configuration. New tumor involving the papillary process of the caudate lobe, which shows progressive enhancement and restricted diffusion, measuring approximately 2.2 x 2.4 x 2.5 cm (series 14, image #24; series 21, image
#12). Hyperenhancing 0.9 cm focus in the inferior right hepatic lobe (series 12, image #44), likely a shunt. The hepatic veins and portal veins are patent.
II) Mayo’s Analysis of same scan, July 8, 2018
EXAM: INTERPRETATION OF OUTSIDE MR ABDOMEN AND OR PELVIS MRI abdomen withoutand with IV contrast COMPARISON: MR abdomen 1/19/2018, PET/CT 11/16/2017.
FINDINGS: Postoperative changes of Roux-en-Y hepaticojejunostomy resection of the common hepatic duct, common bile duct, and gallbladder performed 9/14/2017 for moderately differentiated cholangiocarcinoma. Adjuvant chemoradiation. New non-masslike T2 hyperintensity and restricted diffusion in the caudate lobe
measuring approximately 2.2 x 2.8 x 2.5 cm (series 14, image 24 and 21/12). The lesion shows heterogeneous enhancement- early arterial phase hyperenhancement and persistent portal venous and delayed enhancement with no peripheral clearing. Ill-defined hyperenhancement in the inferior right liver, likely an intrahepatic hepatic shunt (12, image 44). Similar heterogeneous enhancement in adjacent perihilar region in the posterior aspect of segment IV and segment II. No intra or extrahepatic biliary ductal dilation. Small fluid collection medial to the liver has mildly increased from MR Jan 2018. Overall the features of the lesion in the caudate lobe is indeterminate but likely represents post radiation effect and associated vascular changes. No suspicious focal liver lesions in the liver. Portal vein and its intrahepatic branches and hepatic veins are patent.
IMPRESSION: Heterogeneous enhancement and restricted diffusion in the caudate lobe is favored to represent postradiation change; however, neoplasm is not excluded. Suggest follow up and correlation with tumor markers.
III) Notes from Conversation with my oncologist at UPenn, July 12, 2018
Tumor board reviewd my scan and have determeind that there is a tumor. Chemothropy of cisplatin and gebsizimine to begin immediately for ten to twelve weeks, followed by surgery
IV) Mayo Biopsy, July 17, 2018
IMPRESSION: Ultrasound-guided hepatic mass biopsy, with no immediate
EXAM: US LIVER BIOPSY
TECHNIQUE: Sterile. 1% lidocaine for local anesthesia.
Location: Approximately 2 cm heterogeneous masslike region in the caudate lobe of the liver, which corresponds to the abnormality seen on MRI from 07/03/2018. Needle size: 18-gauge, Number of passes: 2, Blood loss: 1 to 75 ml
POST-PROCEDURE DIAGNOSIS: Indeterminant caudate lobe hepatic mass
V) Mayo Biopsy Analysis, July 18, 2018
Cytology Fine Needle Aspiration (including core biopsies)
Gross Description: Received 2 alcohol-fixed smears and tissues. Additionally, received in formalin labeled with patients name and medical record number “05168506” and labeled as liver, heptic mass are two tan brown soft tissue cores and multiple fragments ranging from 0.-1.0 cm in length and averaging 0.1 cm in diameter. The specimens are submitted en toto in cassette A1. Grossed by EDM
Source A. Liver mass, fine needle aspiration.
Interpretation A. Liver mass fine needle aspiration (smears/ core biopsy): Negative for malignancy. Liver parenchyma with discrete fibrotic lesion and adjacent reactive changes, consistent with treatment effects. Scattered foci of extrmedullary hematopoiesis
Tests: Cytology Fine Needle Aspiration
Frozen: No Priority:
Description: hepatic mass
KP the Rock.
Abe and KP were with me on July 5th when I received the hard news of my bad scan. We were planning to celebrate a clean by doing something fun in Philly that afternoon.. Instead we drove to IKEA and had Swedish meatballs and wondered what was next. Later that day KP rushed to Federal Express Office to send a copy of the MRI to Dr. Nagorney, my surgeon at the Mayo Clinic. That evening we booked flights to Minnesota. All the while KP walked with me. In the midst of anxiety, she remained calm. When I was stuck in the darkness, she generated light, and while I was to stuned to celebrate, she danced in the halls of the Mayo Clinic and gave thanks to the universe. When I apologized for having to put her through all of this, her response with a smile was, “It is what I signed up for.”
Shaking off the dust and getting back on my feet.
And so I find myself trying to regain the composure and place that I was in before I walked into the doctor’s office on July 5th. I know it will happen. I just wish it would happen now. I love my walk in the world, the work I get to do, the people I work with and the blessing of being apart of the creativity, energy, optimism and joy that comes with working form a place of joy and possibility.
So I hope you wont be confused if I’m not out celebrating quite yet. Maybe am still in a state of disbelief, maybe I am worried to much about the next scan, perhaps I continue to struggle with the question, “How do I get to be so lucky? I hope you wont misread my numbness as not being grateful. I hope you realize that I believe that walking with you over the past few weeks and months is what has held me up, kept my spirits going, and served as a key ingredient that brought me this weeks great news.
Though I hate putting you through all of this, but I will do it again and again because I need you and because it is what people who love each other do. I wonder how to live a life of gratitude where this good news can shed light and love on all that is here and all that is in front of us
In my last note I shared with you that I still had hope, but that the hole I had to crawl though was narrowing. Somehow, and I believe, with your help, I made it through. This week while I was consumed with my own diagnosis and prognosis, I thought of my friend Leslie, who just finished major surgery and her chemotherapy this week. What I want her and her family to know and what I want you to know is that what I learned this past few weeks …and that is ..
That bad news in not the final word,
that mystery is everywhere
and that hope is the fuel that feeds the flame
that enables us to just be
and in that being wonder returns.
Hugs and Kisses, love to you all,
* Hallelujah: https://www.youtube.com/watch?v=ebtqoKHyHzk