“Robin and I met 32 years ago through mutual friends. I was a bar back at a local bar at the time. A friend of a friend came over to me while I was working, handed me a napkin with a phone number on it, and simply said, ‘My friend over there thinks you’re cute. Here is her number.’ I put my tray of drinks down, took the napkin, and wrote my number on it. I gave it back to him and told him to tell her, ‘I think she is cute too, but I never make the first call.’
Two days later, after having worked my regular job for 40+ hours that week, and working at the bar on the weekend, I was awakened by the phone ringing. Back then, we didn’t have cell phones or voicemail, so that ringing wasn’t going to stop any time soon. I had to drag my butt out of bed to answer the phone, only to be met with, ‘Hi, this is Robin and I heard you don’t ever make the first phone call so…tag you’re it.’
Since our friend of a friend hadn’t told me her name, I had no idea who had just woken me up and I hung up and went back to bed. Later that day, as I stumbled out of bed, it occurred to me who this person was and I returned the call. After a two-hour conversation, I had to get off the phone to get ready to go work.
After several hour-long phone conversations over a two week time frame, Robin and I met for our first date. The date was September 25, 1987. In June of 1988, we moved in together.
Robin and I didn’t have any real conversations, in regards to having children, until about six years into the relationship. When we started to have the ‘conversation,’ Robin was quite hesitant for a number of reasons. ‘We live in trailer! How would I explain this to my family? We are too old.’ As I was 28 at the time, I was a tad bit offended. Robin told me she had never ‘told’ her family she was gay.
We continued to discuss this over the next seven or eight years. At the same time, medical technology advanced. On my 36th birthday, I told Robin I was going to meet with a doctor’s office that specialized in fertility treatment and I needed to know if she was in or out. In true Robin form, she waited a few days, then said she was in and would like to join me at the doctors appointment.
Then came choosing a donor. I knew I would like to keep the opportunity open for our children to know their biological family. I wanted First People and Irish bloodlines and Robin wanted First People as well, believing that she was of that descent.
The whole insemination process was, to say the least, arduous and intense. Taking my temperature every morning; looking for the increase to indicate ovulation; ultrasounds to see how many, if any, eggs I had that month; HCG shots to increase the size of the eggs; scheduling two inseminations within 48 hours of ovulations; the waiting, waiting, and waiting, only to be disappointed each month. Then came a hysterosalpingogram, which is dye injected into the cervix to check for any growths or blockages. More temperature taking, ultrasounds, shots, and waiting. Next came more disappointment; laparoscopic surgery to scrape away any endometriosis; two more months of temperature taking, ultrasounds, progesterone added for good measure, shots, and inseminations. Phew.
Thirteen months later, Violá! Kileen was conceived.
Seven more months of temperature taking, progesterone to start, one laparoscopic surgery, six inseminations, and Violá again! Genevieve was conceived.
Robin and I had moved out of the infamous trailer in August of 1997, and found out I was pregnant with Kileen in October of 1997. Kileen was born July of 1998, and Gen was born September of 2000. I had lost both of my brothers in 1981 so having, at the very least, one sibling for Kileen, was imperative to me.
When Genevieve was born in September of 2000, we were given the gift of a child with Down Syndrome. The never-ending battles for inclusion, equality, and acceptance took its toll on everyone around us.
Robin and I separated in 2002. She moved out of the house for a couple of years, then in 2004, needed to move back in. We had decided it would be best for the girls if we all lived under the same roof. That was a rocky time at best, but we continued to live under the same roof, right up until the end.
Several times during 2016, Robin had to see her doctor for gall bladder pain. By November of 2016, they had decided to have her gall bladder removed. The surgery, of course, required pre-op testing which included a chest x-ray.
Robin wasn’t home more than four hours after the x-ray before the doctors office called. As Robin and I sat watching The Young and the Restless, the doctor told her she needed to come in the next day to go over some of the results.
The sound of Robin’s voice and the look on her face was all I needed to know she was scared. I hadn’t heard what the doctor said to her, so when she hung up the phone I asked her about the call. She said, ‘They want me to be at Dr. B’s office first thing tomorrow to go over the chest x-ray.’ So, I asked, ‘What time do we need to be there?’
As we sat there in the doctors office, we didn’t really speak. We just sat there waiting.
The nurse came in and started asking Robin if she had been having any problems breathing, walking, wheezing, experiencing shortness of breath, or coughing. Robin said no to each and every symptom. Then the doctor came in and told us they had found a spot on her lung when they did the x-ray. He said it was probably Stage 1 lung cancer, as Robin seemed asymptomatic.
As we talked to the doctor a little more, Robin started to describe one of the college visits she had gone on with Kileen, less than a year earlier. She was out of breath while walking up a hill at Sarah Lawrence College. But as we age, we all make up excuses as to why we can’t do things we could when we were younger. Certainly walking up hills rapidly would be one of those things we would attribute to age, as opposed to Stage 1 lung cancer.
The doctor then gave his, ‘I know cancer is a scary diagnosis but there are medical breakthroughs almost daily,’ speech. He said he would like to do some more testing. He wanted her scheduled for a breathing test, stress test, and at this point, a PET scan, to rule out any spreading of the cancer.
At this appointment, he spoke only of Stage 1 lung cancer. They would proceed with the gall bladder removal if it was what Robin wanted. Then, they would go on to removing the lung tumor. At this time, the gall bladder pain was at its worst for her and she just wanted it to stop. She agreed to this treatment agenda.
The appointments began. Two days later, we were back for the breathing test. As it turns out, Robin couldn’t make it 100 feet before her blood oxygenation levels fell below 60%. She was immediately prescribed two separate inhalers to assist with breathing and air flow. In late December, she had the PET scan. In early January, she had her gall bladder removed.
By mid-January, we were back at the doctors office with the results of the PET scan. The cancer had spread to her bones. The scan had revealed three spots of immediate concern. Removal of the tumor was no longer an option. Then came the diagnosis no one ever wants to hear: Stage 4 metastatic lung cancer. As the tears rolled down our faces, the oncology navigator came in, telling Robin not to give up — medical breakthroughs happen.
The numbness that followed was unbearable. Either you start living with cancer or you start dying with cancer. ‘How do we tell the kids?’
Then the appointments began… again. The locations of concern were her femur, spine, and pelvic area.
Two imaging appointments, one biopsy of the lung and one biopsy of the spine, were needed. Another CT scan revealed that a rod would need to be put in her leg, and cement would need to be inserted into her spine, to prevent breakage. Before this could happen, she needed to have her annual GYN appointment. This appointment revealed more cancer in her uterus. A, D, and C was scheduled immediately. Waiting again.
Chemo started. Results appeared to be positive. Then a hold off on chemo to put a rod in her leg. Rod surgery appeared to be successful. Then came infection in the surgery location. We started antibiotics and continued as long as the wound needed to be packed. One month later, there were more antibiotics to prevent reinfection. The chemo trial started. She was hospitalized for a week etc, etc, etc.
All of this brings us to Christmas time, 2018. Two years of chemo, biopsies, surgeries, hospitalization, radiation, and another PET scan. In November of 2018, we continued to receive positive news, if there even is such a thing when dealing with a cancer diagnosis.
Then, the blood work and the PET scan revealed the cancer had spread yet again, this time to her liver. Robin’s will to fight was beginning to dwindle. She was getting tired and everything started to hurt. She was on ten different medications and quite frequently on steroids. The steroids would make her already weakening muscles weaker.
She increasingly had difficulty getting up from seated positions. I would have to bear-hug her and pull her straight up, because if she were to lean towards the side even the slightest, she would fall over. She no longer had the strength to pull herself up.
One night, she had difficulty lifting her legs up the two steps on the front porch. She was carrying a bag with a t-shirt in it. The weight of the bag was enough to make her fall. She was a bit impatient that evening and wouldn’t wait for me to help her. I went out to find her hunched over on the second step, but completely unable to crawl, stand, or even turn over to a sitting position. She felt so defeated that she couldn’t bring herself to even try to get up. She stayed there, crying and yelling, ‘Just leave me out here! Let me die! What did I ever do that was so bad?’
In the freezing cold, I found myself in a position to have to somehow drag her in out of the cold. I finally goaded her into trying to get up that last step by throwing one of her beloved New York Giants coats on the floor in front of her, and pulling her onto the slippery coat, so that I could pull her across the porch and into the house. She continued crying and screaming loud enough so that Gen came running to see what was going on.
Gen, as always, wanted to help but was crushed by the sight of her Robba in this state. So we turned it into a game of ‘who could drag Robba the farthest.’ Gen and I thought it was funny but Rob… well you know, we need to be able to laugh sometimes, not always cry. After dragging and shoving Rob onto her bed so that I could cover her up, I checked in with Gen. Then, I sat down just to see Rob walking to the bathroom.
That is how you could describe our lives before, during, and after this diagnosis. We will struggle, fight, and fall down. But, we will get back up and go to the bathroom, or anywhere else we need to go.
What I do know, is there is no greater pain than watching your children in pain you can’t stop.
When Robin and I decided to have children, I began to think about not only what their futures would be like, but what parts we would play in their futures. I would see us sitting on the porch of what would be their family home, waiting for Kileen and Gen to come home and tell us about their latest adventures. Life doesn’t always give you the endings you see in your mind’s eye, but it did give Robin and I 32 years of whatever it was we were to each other.
Robin passed away on November 23rd, 2019. The process to move forward will continue, as each day brings a new ‘first’ without her. As my daughters and I have already discovered, some days will bring back a flood of tears, other days we are all ok. We have had difficulty not purchasing NY Giants merchandise, or not going to pick up Rob’s medications.
I am also ‘relearning’ what food I like and what food I bought because Rob liked it.
Robin and I were never clear on defining who we were to each other, it seems that everyone else was busy figuring it out for us. But the bottom line isn’t who we were to each other. It is, and always will be, who we are to Kileen and Gen. And that is Mom and Robba.”
This story was submitted to Love What Matters by Kathy and Kileen McLeary of upstate NY. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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