The Diagnosis.
It was a Friday afternoon. October 5, 2018.
Mocha and I were invited to a wedding on the other side of Boston. A wedding that started at 5 or 6pm, which meant we had to hit the road by around 3 if we were to arrive on time.
We were in a happy light mood. I cherish the moments when I feel that light and happy.
I love getting dressed up and going to weddings with my Man. We coordinate our colors, he likes to dance with me and is such a personable friendly guy. Steve was friendly but he easily turned people off with his abrasive know it all attitude. Steve would NEVER dance with me at weddings, in fact just getting him to attend a wedding in the first place wasn’t an easy task. After being married for our second time we made a deal. I'd stop asking him if he’d dance with me at weddings and he agreed if they played one particular song he would. That arrangement didn’t last long because I could request the song to be played and so of course I did. The reality was he didn’t want to dance with me anyway so I gave up trying.
Anyway, I am always happy to go to weddings and parties with Mocha, he loves to dance and is proud to be with me, he loves me and it shows. He “loves being seen with me” is what he'd say. We were in a festive joyful mood as we traveled to the wedding of the daughter of one of his very best friends. Jon and Lisa were there to celebrate the night of our engagement, they are important friends. Their daughter Jasmine was getting married. Mocha and Jon are like family. It was a special wedding and we were excited to celebrate because of the love we already felt for the family and the bride. Not to mention everything I'd heard about the plans indicated it was to be a magical night. I had some ideas that the location was spectacular, it was the height of fall colors and the ceremony was scheduled for sunset. I was totally excited about this wedding and we turned it into a date night for ourselves. We even considered staying overnight at one point but never booked the room and committed to it.
I recall passing the rainbow striped gas tanks on the south side of Boston and laughing with Mocha because we timed it perfectly to miss all the city traffic. The sun was shining and the air was warm with just a small need for a sweater. A perfect fall day. Another friend was also on her way to the wedding from another direction and she posted a selfie of her and her husband in the car driving and so I took and posted a picture with my Man driving and commented we were on our way too. Fun was the word for the night and we were ready for it.
It was about 4:00 when my phone rang, it was Steve calling. We knew he had had a cat scan and some tests that day and assumed they were finally going to tell him he had gallstones or an obstruction, any one of a few diagnoses came to mind. Steve had researched a dozen different things it could be and we thought today’s tests would be good news because we’d finally have an answer.
I picked up the phone and said “Hey Willey”
He said immediately “I’m dying”
I shrugged it off a bit thinking he was in pain and he was dramatizing his discomfort and I said something like “oh no, are you hurting? What did you eat?” This had been such a painful journey for him so far and I imagined he ate something at lunch that didn’t sit right and he was in pain.
He said firmly “No, I’m dying. By this time next year I’ll be gone, I won’t be here anymore.”
Mocha by now is chirping in with “Hey Willey”. I turned towards Mocha while saying to Steve “Why are you dying?” Mocha stopped and listened. I still couldn’t imagine what Steve was saying but I knew I had to focus now. Steve told me he just got off the phone with the PA or someone at the doctor's office and she told him he had pancreatic cancer.
The car seemed to be sitting still. The sun was causing it to feel like a greenhouse inside… I tried to open the window but the wind was too much and I couldn’t hear anything. I couldn’t catch my breath. My head was spinning. I heard Steve say “are you there?” and I proceeded to go off on a tangent of avoidance about "how dare this woman tell you something like this over the phone, how can she say that from only this scan and how the fuck does she know it’s pancreatic cancer." I was livid. Heartbroken first but if I let the anger take over I could avoid the heartbreak for a bit. So anger is where I stayed at that moment, until I felt myself starting to cry.
It’s all such a blur and all such a vivid memory at the same time. I hope as you read this you will understand what I mean by that kind of vividly blurry memory?
I recall looking at Mocha and seeing his face when he heard me say pancreatic cancer and I saw the happiness fall from his eyes as he focused on the road and then reached out and took my hand.
I listened to Steve explain how someone called him at work and told him the results of the tests he had that day. He said she told him he had a large tumor on his pancreas and they believed it was pancreatic cancer.
His response to her was “So I’m going to die?” Steve told me at that point she started to get nervous and fumble with words about further testing to determine stage etc. I was so mad about her discussing this with him over the phone that the next few minutes of our call focused on that. I said things like, it can’t be that bad or they would have never told you over the phone. They’d insist that they see you in their office or at the very least wouldn’t they make sure you were not alone. He told me that she actually did ask if he was alone… it was the first thing she asked, and he told her he was at work alone in his office. She then said something along the lines of “so not really alone?” and Steve confirmed yes there were other people in the building and he wasn’t completely alone. He invited her to tell him whatever she needed to tell him. In fact I’m certain he insisted. I suppose that made her feel confident enough to tell a patient over the phone that they have pancreatic cancer. I still think it was outrageous for her to do, but Steve got over it quickly, he didn’t mind. It was a friday afternoon he said and he didn’t want to have to wait all weekend to know.
He had been terribly sick and in so much pain, for so many months and he could feel the truth in that diagnosis. He believed her. I tried to say I wouldn’t believe it and that we had to get further confirmation but he argued with me that he knew it was true.
“I’m going to die Laura”
I cried harder now, all attempts to be brave and strong for him were useless. I said we'd fight it, I'd help him, he could beat it. All the things you would say to someone you loved if they were diagnosed with cancer. Any kind of cancer.
But he knew pancreatic cancer wasn't really beatable. He knew that by the time you have symptoms related to this type of cancer it’s already advanced and mostly untreatable. He insisted he knew it was true and he knew he was dying.
He kept saying he knew he was dying… and honestly he seemed relieved by that.
I asked him “what can I do? How can I help?”
He told me that he was scared. I reassured him that we had his back and we wouldn’t let him face any of this alone. I told him it was ok to be scared, who wouldn’t be. I asked him what he needed me to do first and he said he wanted me to help him tell the girls, and also go with him to tell his Mom. I told him of course I would. I recall asking if he had talked with anyone else yet. He said only his boss, since he was at work when he got the call and that was it. I encouraged him to call his sister or brother but he felt like he wanted to wait. The way I remember it, he wanted Jade and Sarah to hear it first, they were his daughters and should be first to be told and he wanted to carefully consider the timing of which sibling to talk to first so that they would be able to comfort each other. For instance he couldn’t tell his sister first because she would need her brother or mom to talk to. I encouraged him to not go online and to call his best friend Chris.
We talked a few more minutes and made plans to talk in the morning about how and when to tell the girls what was going on. I tried to convince him that there was still a chance this wasn’t pancreatic cancer and that there was a mistake somewhere. He didn’t agree. He admitted that he had already been online Googling about symptoms and he could see it all fit perfectly. He knew it in his heart. This was his reality. He had pancreatic cancer and would die...probably soon.
I remember speaking up and saying maybe he could have chemo or surgery and he got all riled up very quickly and said he didn’t want chemo… “I never want chemo” he exclaimed. I said but what if...and he cut me off and said “NO LAURA I don’t want chemo. Please back me up on this. I don’t want to have treatments to make me feel worse when it’s not really going to change anything.” I remember him saying clearly and matter of factly “It’s pancreatic cancer Laura… you don’t come back from pancreatic cancer, you die from pancreatic cancer and you die quickly.”
It was such an odd and short conversation. This 15 minutes in the car, this was the first time (but not the last) he made it clear he didn’t want to fight it and that he needed me to stand behind him with that decision. I agreed. After all we’d been through in this life I knew beyond a shadow of a doubt I would have his back however he needed me to have it. I could still hope he’d change his mind at the same time as support his need to feel in control of his own process. I could do this. I remember asking the angels for help. Saying something like Spirit will help us just before I hung up the phone.
I tried to relay everything to Mocha as best I could, he heard enough to understand.. We cried. We had another hour of driving. An hour filled with sadness and tears. That happy light feeling was gone. The excitement of this special occasion was dulled.
The wedding was indeed a magical night. The venue was a beautiful cabin tucked in the woods overlooking a lake enveloped by fall leaves and autumn splendor. The ceremony was outside on a huge porch facing the setting sun. Breathtaking. The couple offered little lap blankets as a token of the night and it was lovely to bask in the glory of the sunset, with the crisp fall air, beautiful views and loved filled hearts of the family and friends surrounding us. Jasmine was a stunning bride, everything was perfect, the sacred ceremony and ritual hand fasting only added to the awe. The energy of the night was sparkling and bright. It was good we were there, distracted by the glory of love and the potential of new beginnings. In truth our hearts felt heavy, unable to process, unable to fully commit to having fun. We had a drink. We danced a conga line. We reconnected with old friends and took pictures and smiled on the outside.
Jon and Lisa knew and loved Steve but we couldn’t share this sad news on their baby girls special night and we didn’t want to appear down or heavy hearted and so we did our best to smile and be light. We supported each other through dinner and some dancing and when it was time we said goodnight and made the long drive home. A quiet ride focused on music and holding hands.
We woke the next day and hoped it was all a bad dream. I called to check in with Steve and he confirmed it wasn’t a bad dream at all. He felt terrible. He was crabby. He was resigned to dying. He had been suffering with stomach pains for so long and now knowing the cause of it gave him a sense of validation and relief. It was a shitty reality we had to face but he felt at least now no one can tell him to suck it up. He himself knew now that he wasn’t imagining all this.
We decided it was most important that we talk to the girls ASAP. Not only was it not fair to tell others before them, it didn’t feel right to go on with any further testing or discussing the future without them involved. Mocha suggested maybe they would give Steve the motivation to want to do whatever it takes to live and I hoped he was right. We decided to have them come over to our house for pizza and a fire and we tried to plan it for the next day. Sunday.
It was my idea, waiting till the next day, mostly because the girls weren’t always available with only a half day notice and frankly I was still processing it myself. I sent a text to the girls… a group text asking if we could get together for pizza and a fire the next day and tried to casually mention that it was “important” so they would not try to dismiss it. Major fail. My brilliant daughters could feel from my text it was more than important and they began calling me and putting me on the spot. “What’s going on?” “ What is so important?” “Is everyone ok?” They knew Dad had been in pain all summer and were immediately suspicious, and relentless. Relentless like their Dad.
My mistake was thinking I could get away with dropping a hint of it being important without them hearing the urgency. They weren’t willing to wait so we had to scramble and get Steve to agree and then we adjusted our plans for that day instead. We would gather for pizza and a fire tonight and not wait. It was important for Steve that the girls had their partners with them. Jade’s husband at the time was a busy guy and he was working and didn’t come with her. Sarah’s now husband Matt was there and he was a tremendous support. I think this is when I first knew for sure Matt was a really good guy. Steve would have loved Matt very much if he had more time to get to know him. Heavy sigh. He would have adored the way he cares for Sarah.
Steve arrived first and then the girls and as we stood in my kitchen munching on pizza they were impatient and kept asking for information. Steve was looking at me for support and finally just said. “Turns out I have pancreatic cancer and I’m going to die.” I remember Sarah gulping and Jade saying something like oh shit… and the tears beginning to flow. I’m not sure who brought up treatment and the possibility of chemo but Mocha remembers clearly when Steve brought up supporting his decision to NOT have chemo Sarah was standing at the bar in the kitchen and said “Gimme a break Dad you just told me you were dying, can you let me absorb that first?”
Jade wanted details, exactly what did he know and how did he know it. He shared all he knew, which in truth wasn’t much. He was told that it was a very large tumor on his pancreas and after looking at his blood work and scans they thought it was most likely pancreatic cancer. He explained to them that we all knew that he’d been sick for more than 6 months, and he knew from reading about pancreatic cancer that if he was experiencing symptoms it was already late stage.
So hard to recall the exact details. There are memories along this journey that are all mixed up and others that are clearly defined moments. This is a mixed up one. Mocha remembered being in the kitchen and the conversation there. I had completely forgotten and the girls don’t remember many details either. The things that stand out about that night were things like sitting around the fire with the girls. I am realizing my memories are often the oddest details. I remember we got pizza from 2 different places because I don’t like the place Steve wanted to get pizza from. It was ironic that he ended up loving the pizza from the place I chose and hoped to have it again when he could eat. It is sad that he never did. We had warm apple cider and caramel vodka for drinks and we laughed a lot. It all felt surreal. I remember the girls being mad at me for not telling them sooner what was going on. I felt strongly that it had to come out of Steve’s mouth, not mine, and I reminded them that I only knew for that day. I recall thinking how brave they were. I remember hugging them and wishing I could make it different for them. I know, and anyone who knew Steve will know, he made it as light as he could. He joked about morbid things like how they would be able to pay off their student loans now, he talked about bringing his ashes to Grace Bay and he bragged that now he had a good excuse to avoid things he didn’t want to do.
Steve wasn’t always that interested in holiday dinners or birthday dinners or family get-togethers outside of Thanksgiving with his family and a weekend in the summer they called Willeyfest. Socializing wasn’t his forte and he took delight in knowing that no one could push him to go anywhere, he now had the ultimate excuse to not go to social events. Typical Laura, the moment after he made that comment I tried to convince him we should all go together to the Topsfield fair that weekend. He never wanted to do things like this. In particular this fair I tried every year we were together to get him to go with me and take the kids but he never wanted to. Ever. I thought maybe knowing he might not have another chance he’d say yes. He didn’t say yes. He said maybe and then by the next day no. It is one of those stand out things of that night for me. I took his comment about not having to do what he didn’t want to do and tried to convince him to do something he didn’t want to do.
We all allowed Steve to set the tone of the night and he picked his usual spin on life. It was crazy hard for us but he was very matter of fact about dying. We laughed a lot and we cried more. We were still the same family. Steve was always more than ready to be funny when he felt uncomfortable and he certainly remained true to himself that night. What I will say about the energy and feeling of this night by the fire is that it turned out to be lighter than we anticipated. The fact that it felt light at all was a miracle itself.
Going to tell his mother was heavier. He wanted me to go with him and there was no question I would. We called her and told her we were coming over and we braced ourselves. Phyllis, who I’ll refer to as Nonni, is a strong italian mom. Her husband of 50 years, John, Steve’s Dad, Gramps, died on Thanksgiving evening not even a year earlier. She lived in a small basement apartment they had moved into together after selling their family home to one of their granddaughters. Gramps was actually able to be in his own home that sad Thanksgiving when he had a heart attack and died. So many ways life lines us up exactly as were meant to be, some we can see and others we have no idea but I’ve learned to trust.
Nonni was sitting at her kitchen table in her dark basement apartment. Steve and I were divorced when they moved here and even though she still came to my house for christmas and summer cookouts I had never seen this space she now lived in. It felt dark and sad to be honest, even sadder because she was alone and Gramps wasn’t there.
The most critical part to understand about this conversation and the challenge it created is that Nonni is pretty much deaf. She can’t hear anything. Oh she likes to try and convince you that she hears you but it’s clear she doesn’t. This was going to make our conversation even harder. Next consider Steve’s sarcasm and nonchalant way of discussing things matter of factly and you can understand how this was going to be incredibly hard for me to navigate and make sure Nonni both understood and was ok. She was 85 at the time and there were lots of reasons to worry about her health and emotions.
When we walked in she first commented that this must be big news if I was there with him to tell her about it. He laughed at her and in true Steve fashion said
“ya Ma, we’re getting back together and Laura’s pregnant”
Nonni said what are you saying and he leaned in closer to her and said it again. I was standing behind her in the kitchen and heard her say “Oh boy” As Steve joked with her more and said something like “ya that would suck right” I could feel where he was going with this so I tried to deflect his path by interrupting with “NO NO we’re not getting back together” Nonni replied in typical Nonni fashion with “Good, no offensive Steven but I like Mocha” and she then turned to me and said “So your pregnant huh?” and looked me up and down to see if I looked pregnant. I was wearing big baggy clothes and had to laugh at her while she pulled at my top trying to see my belly. She was clearly forgetting my age. “No, No Nonni I’m too old for that” She laughed and said something like “whew cause you’d regret starting again so late.”
Let yourself imagine and see this whole conversation with raised voices and Steve and I constantly repeating ourselves. It was comical. As comical as it could be under the circumstances. We were all laughing quite a bit at the thought of it all.
Being the sensitive guy he was, Steve went right from laughter to “No Ma, she’s not pregnant and we’re not getting back together, it’s not that bad, I only have cancer.”
I gasped and shot him a look. I knew he was going to do it, I really thought I deflected it when I cut in, but NOPE. He smiled at me and said in a voice he knew she couldn’t hear that he just had to rip the bandage off and it couldn’t hurt to make her laugh first.
Nonni heard cancer but not really the whole thing and she could tell we were talking to each other but couldn’t hear us. She was looking at both of us trying to piece it together. He repeated it and said “Turns out I have cancer and that’s why I’ve been in so much pain... but at least we're not getting back together.” I imagine he was thinking the humor would be a band aid of sorts. As it began to register in her mind what he was saying she started asking questions. What kind of cancer was it, how did he find out, what stage, did he have a biopsy? I remember her saying just please tell me it’s a “good cancer.” As if there is a good cancer. She knew he had been having trouble with his stomach and digestion so stomach cancer was a natural first thought. She rambled a bit nervously trying to comprehend. He finally explained that what he knew so far was that it was a tumor on his pancreas. Pancreatic cancer. I can still hear how she cried out and said “Oh no, that’s the one I was afraid of.”
It was a short visit. If I remember correctly, Steve made sure his sister would be ready to talk to her and we told Nonni to call Patty when we left. It was hard to be with her, yelling at her to be heard. Trying to help her understand and process this crappy news. Her 53 year old son, her baby, was facing almost certain death. She wanted more information and said she was going to hope for the best, not believe the worst case yet, she wanted to believe that the biopsy would reveal something less terrible. She would pray. Steve wasn’t patient with this line of thinking and I had to stop him from discouraging her and pushing her to accept all his feelings about chemo and dying. Not yet. Let her digest this I said to him. Emotions are not something many of the Willey’s are very comfortable with. Not something they face with ease. Steve was happy to leave and I think Nonni was happy for us to go so she could process this privately.
All he could really tell any of us was that he was going for further testing later that week and would have more answers for their mountain of questions then.
He went for the biopsy and more scans and the diagnosis was confirmed. He had advanced late stage pancreatic adenocarcinoma. He already knew it was advanced because there are no symptoms until it’s advanced and he had been having symptoms for months already. I was with him when they told him the tumor was too large to remove surgically. The doctor said It was blocking his small intestine and preventing food from being able to make the right journey out of his body. That’s why he had been having so much trouble eating food. He had been suffering for months and this tumor was very large. It’s hard to not be angry now about that Dr. in June who said “so sue me that’s what I have insurance for.”. That doctor could have made a difference had he taken Steve seriously. If he didn’t accuse him of faking it to get pain meds. Who knows if maybe Steve would be alive today if that Dr had done his job and listened to his patient. If he had taken even a moment to get to know Steve he would have known that he wasn’t a pill seeking addict. He could have addressed this in June and maybe it would be a different prognosis.
Here we were though, the specialist he was seeing now suggested trying chemo to shrink the tumor and then possibly be able to operate. Possibly. They were very clear that it was all a big shot in the dark at this point. Steve made it clear he didn’t want to try chemo at all and that he hadn’t been able to eat for so long he was afraid his body wasn’t strong enough. They concurred and said while he was unable to eat it wouldn’t be a good idea. The immediate goal would be to see if they could help him be able to eat again.
Having the confirmation now that it was in fact advanced late stage pancreatic cancer Steve was more convinced than ever that he was going to die. That even if he did have chemo it would only make him miserable for the final months before he was to die anyway. He didn’t want that. He knew he was going to die and he didn’t want to fight it. He was relieved in a sad sort of way. Steve was not often grateful to be alive. He was often a miserable prick as I’ve said before and it was clear he was done with living and ok with dying. He was most concerned with getting his affairs in order and making decisions moving forward.
