Grief is the price we pay for love
By: Hillary Zumbrun.
I'm a 32 year old widow and mother to one beautiful baby girl and 5 angel babies. I'm still trying to figure out what "normal" looks like after a long infertility journey and the loss of my husband.
This is my family’s story…
Our Fertility Journey began in 2019. My husband, Tom, and I had been married a little over a year and decided to come off birth control and start trying to get pregnant. To our surprise, we got pregnant the first month. We were a little overwhelmed, we thought it would for sure take longer. I had an early scan at 7 weeks that showed the baby was a bit smaller than they’d like to see, but I was reassured that everything was fine and I probably just wasn’t as far along as I thought. No bloodwork was done to check HCG or progesterone, but as this was my first pregnancy I didn’t even know to ask that those be tested. Two weeks later I had another scan and was told the words so many hear, and that I’d never be able to forget. “I’m sorry there’s no heartbeat.”
I had left work for the appointment during lunch so I had to go back and finish my notes and cancel the rest of my day before driving to the pharmacy and picking up the drugs that would tell my body that I was no longer pregnant. Before I could head home, I got a call that they had neglected to give me an RH shot before I left. So I had to go back to their office, full of expectant mothers, and wait until they could give me the shot. I took the wrong turn home 3 times, I was in such shock. The next day, 5 days before Christmas, I took the drugs and eventually passed our sweet baby into the toilet. The drugs really upset my stomach, and I had no choice but to flush the toilet. I had many awful thoughts about our poor baby out in our septic tank. They tore up that septic tank for a recent home renovation and I was thinking about our sweet first baby being in there. Those types of intrusive thoughts always win.
At a follow up two weeks later it was determined that I hadn’t passed all the tissue naturally and would need a D/C. I couldn’t believe that I was still having to deal with this almost a month later. I was anxious to try again. So, we tried…and tried and tried. For the next 3 years I tracked every single function of my body. I cut out every food/drink/environment determined to potentially effect conceiving. I was diagnosed with a clotting disorder and stage 3 endometriosis and had 2 surgeries to try to remove it. That pain was intense and lasted months.
Finally, when my doctor started seeing patients exclusively at a birth center (which I refused to go into as a woman struggling to conceive) we decided to leave that practice and move forward with IVF. With my endometriosis and my husband’s less than stellar sperm, they retrieved 14 eggs. 5 fertilized, but in the end, we only got 2 embryos. We chose not to test them genetically and knew we were rolling the dice. The first transfer ended in miscarriage. We only had one embryo left. After a round of Lupron, miraculously, the second one stuck! When I was in tears telling Tom about the phone call, he immediately thought I was crying because it hadn’t worked. Even though we finally had a positive test, fear of loss doesn’t go away. I think I was well past 20 weeks before I felt somewhat secure in my pregnancy. I fought with myself about having a baby shower because I had felt negatively about them for so long. When I finally agreed to have one, the only game I wanted was, “guess how many shots it took to make baby Z?” I saved every single one, and there were over 600.
My husband was a farmer and started to have back pain during harvest of 2023. I was 8ish months pregnant. The pain wasn’t super unusual, he had disc issues before and decided to push through the pain until all the crops had been brought in. But even once he had a chance to rest, the pain just got worse. He started PT to try and help this “disc” but spent the holidays in bed barely able to function. Once 2024 rolled around my due date was 12 days away. Tom’s back pain had continued to get worse so while insurance wouldn’t approve an MRI, Tom went to get one anyways and chose to pay out of pocket.
Later that day we got a call that he was being referred to an oncologist. They found a large tumor in his spine that had fractured his L2 vertebrae.
We were in shock. In tears and falling apart. We tried to convince ourselves that it couldn’t be a cancerous tumor. I started googling obsessively other possible options for what it could be. How could this be happening? My due date was in 8 days. Tom had a small spot of melanoma removed from his neck in 2012, and had no recurrence since, and was tested and checked yearly. Well, it was back. With a vengeance. We never would have guessed that the return of the melanoma was the source of his pain these last few months.
The following week Tom was unable to stand the pain, and I took him to the emergency room. It was cold and flu season, and the place was packed. They shoved us into a room in a corner with only a recliner for him to rest on. Luckily, they give good drugs and he was able to sleep. I, however, stayed up all night, worried he would need a nurse or wake up in significant pain again. My mother-in-law came to relieve me at 7am, and I headed home to clean up for a doctor’s appointment. I ended up napping at a friend’s house close to the hospital after my appointment, and being woken by the phone call that Tom was still in the ER (almost 24 hours after arriving) but a doctor had been in, all but confirming that the tumor was melanoma.
He remained in the hospital for the rest of the week trying to get the pain under control, and finally came home on my due date.
Unable to stand for long, he needed help with showering and dressing, though even lying in bed was so painful for Tom. I went into early labor the day after my due date and labored at home by our bed where he rested as long as possible (about 20hours). I knew he was in too much pain to come to the hospital with me. He had so much anxiety over not being able to help me, and his pain was so severe, that we called an ambulance to come take him back to the hospital. I left for a different hospital (my doctor didn’t have privileges at the one he needed to go to) with my parents about half an hour later, finally in active, hard labor.
I don’t remember a lot of the next day. I remember feeling relief that my husband was comfortable and being taken care of. I had picked up a bug while he was in the hospital the week before and was so sick. I was running a fever and couldn’t stop shaking. By the evening, I had stopped progressing and my doctor determined I needed an emergency c-section. He was worried I had an infection in my placenta called chorioamnionitis. Wanting to do anything to keep our miracle baby safe, I agreed.
Our sweet miracle girl, 8lb 12oz 21” long Cora Ruth was born at 5:51pm January 15th, 2024. We didn’t find out the gender beforehand and I was shocked she wasn’t a boy! I had dreams of a little boy during my pregnancy.
She needed a NICU stay to test my placenta and make sure we didn’t have the infection. I got about 10 minutes with her before they took her and my mom up to the NICU. We spent the next 3 days on IV antibiotics, and I went back and forth to the NICU as much as possible. I remember my nurses being frustrated with me because I barely spent any time in my room to get the meds I needed. But I wanted to be with my baby. Thank God we tested negative for chorio, and they sent us home on a Thursday. My husband, sweet Cora’s daddy, got to come home and meet her on Friday.
Tom had started radiation in the hospital, and continued it daily for the next 10 days to hopefully shrink the tumor in his back and help his pain. While he was in the hospital, they found two more tumors, in his lung and his liver. They were really positive about the drugs available for melanoma and shared with us that they thought it could be managed well, if not cured completely.
He was scheduled to begin immunotherapy at the beginning of February. Immunotherapy is an infusion that triggers your immune system to recognize the cancer as something bad and to fight it. Tom had a significant reaction to the immunotherapy, something the doctors told us could be a good sign. He ran a high fever, was hallucinating, had diarrhea, and a rash over most of his body. We took him back to the ER.
While they gave him high doses of steroids to combat the immunotherapy reaction, he didn’t sleep for 5 days. My mom, who had been staying with us since Cora’s birth, would drive into the hospital with me and sit in the car in the parking lot with Cora while I went to visit Tom. She would let me know when Cora needed fed, and I’d come out and nurse her. That was our hospital routine.
He came home a week later, finally having slept and doing much better, but missing our little girl so much. We spent the next month or so managing his pain and medications, going to doctors’ appointments (with Cora in the parking lot with my mom) and trying to survive life with cancer and a newborn. I got up with Cora at night and also got up with Tom to give meds when needed. I helped him shower and dress, as he was still in too much pain to do these things independently, and we wanted to be careful of the fracture.
Eventually, he was in too much pain again, and we had to take him back to the emergency room in early March. He couldn’t receive any more treatment until he slowly, slowly decreased his dose of steroids. But clearly the cancer was progressing. He started to have issues with his bowel and bladder, which at first, I thought was because of the pain and opioids, but we found out quickly after some repeat scans that the cancer was now pressing on his spinal cord.
We live about half an hour outside Fort Wayne, one of the bigger cities in Indiana. They wanted to send us to Indianapolis to a larger hospital where Tom could see a neurosurgeon and get the surgery he needed to relieve the pressure on his spinal cord. He was transported by ambulance and the next day we headed down to be with him.
As it was such a large hospital and still cold and flu season, the nurses strongly advised us not to bring Cora into the hospital. She wasn’t yet 8 weeks old. Tom had a fantastic nurse who agreed to bring him downstairs and outside the front doors of the hospital so he could see Cora one more time the day before surgery.
His first surgery on March 17th lasted 7 hours. We thought it might be good luck for a redhead to have surgery on St. Patrick’s Day. They had to fuse his spine from T-11 to L-4. It was the only way to keep the fracture stable. I knew he would never be completely pain free ever again. They also removed as much tumor as they could see and tried to relieve the pressure on his spinal cord. I made a quick trip back to our Airbnb to feed Cora where she stayed with my mom once surgery started, then went back to the hospital and pumped the rest of the day in the surgery waiting room.
Surgery was a success, but Tom had lost a lot of blood and needed to be in the ICU after surgery. He was there for almost a week before heading to a step-down unit. He struggled a lot in the step-down unit. He was still having significant pain, though higher in his spine, and tumors started to appear on either side of his neck. It was clear the cancer was growing by the day. A huge frustration of mine with this particular hospital is you can’t receive inpatient treatment for cancer. He would have to wait to be discharged before receiving treatment. His care team continued to reassure us that this was typical post op pain. Though with the new tumor growth I knew in my gut that wasn’t the case. My hands were tied to help him. The helplessness of watching those tumors grow before our eyes, knowing he was in so much pain again and not being able to help was torture. But nothing compared to the pain he was in.
I would wake up at 5am, feed Cora, then head to the hospital where I would stay until about noon. My mother-in-law was also down in Indy with us and was staying the nights with Tom.
Finally, I called his oncologist back home and told him how the tumors on his neck were growing and this hospital wouldn’t do anything. They had done a genetic test on his cancer before we left for Indianapolis, and were just waiting for the results. This would determine what kind of treatment he got next. And if his test came back BRAF+ it was possible he could get an oral medication he could take in the hospital.
The test came back at the end of March, and he was BRAF+. It was good news because he could start the oral medication, but terrible news because BRAF+ melanoma is so, so aggressive.
A friend of ours was tasked with picking the medication up in Fort Wayne and bringing it down to Indy. Before he could arrive, Tom had a bad morning. When his nurse came to do his assessment on April 2nd, he couldn’t wiggle his toes. He couldn’t move his legs at all. I was instantly alarmed and asked her to call the neuro team. She said she would. By 10 am when his palliative nurse stopped by, no one had been back in. I was panicking because I needed to leave soon and I wanted someone to come examine him. He was very sleepy and out of it that day and that bothered me too.
I had to leave before anyone from neuro came in. They called his surgeon right away and ordered STAT scans. I was planning to drive back to the hospital and see what the results of those scans were, so my mother-in-law didn’t have to be there alone. Before I could come back, I got a call from my mother-in-law saying he was going to be having emergency surgery, that the cancer had progressed again and was pushing on his spinal cord, again. I headed into the hospital as fast as I could and RAN through the parking garage and lobby only to barely make it to see him as they took him down for surgery.
Another element to this day that was supposed to be a surprise for Tom was that he was supposed to get to see Cora. He had a fantastic PT who was working so hard with him to make him comfortable in a wheelchair so he could come down to the lobby and see Cora. He hadn’t seen her in almost 3 weeks. But because of his sudden loss of movement in his legs and the emergent scans we weren’t able to bring him down to the lobby to see her.
But his buddy had dropped off the oral meds. And I held them as tight as anything while they did another 6-hour surgery to try to help his spine. They had to extend the fusion to T1-L4, and the surgeon was really concerned about the amount of cancer he saw that wasn’t present during the first surgery. The surgery was done around 11pm, and we waited until 3am to be able to see him in the ICU. I just wanted to lay eyes on him and give him a quick kiss before I left. My husband was still sedated and hooked up to so many things I knew he was really struggling.
The next day I will never forget. Tom was there in the ICU when I arrived, but he wasn’t Tom. He was restrained, with mittens on because he kept trying to rip out his lines. My Tom wouldn’t hurt a fly, he was a people pleaser to a fault. But this Tom, he was mean, aggressive, and scary. He was yelling and swearing at the nurse and yelling at me! The nurse said they gave him Ketamine in surgery because it was emergent and sometimes this is how people respond. I was somewhat relieved because my concern was that the cancer had gone to his brain. I never wanted to meet Ketamine Tom ever again. I’d like to forget that whole day if I could. And luckily Tom did. He woke up the next day not knowing any of it happened, thank god.
He progressed really well in the ICU, and taking the oral meds made a huge difference in the pain the cancer was causing. Unfortunately, the surgery did not restore any movement or function to his legs. He still had some sensation though. This time, he skipped the step-down unit altogether and went straight to the regular medsurg floor. They started talking about rehab right away so he could get some strength back and learn to use a wheelchair before coming home. Unfortunately, on April 17th when they removed his staples from the two surgeries, the very bottom of his incision opened up. They told us this might happen because of the radiation he had in that area. The risk of infection was also higher. Tom had some fevers on and off but that was a side effect of the oral meds, so we didn’t know whether it really was infection or not. The blood samples they took that had showed some infection cleared quickly.
He had a 3rd surgery April 18th to wash the incision and close it using plastic surgery. Then by April 26th he headed to rehab! April 26th was the day a year prior that I had the transfer that ended up being Cora. So much can change in a year. Good and bad. The day before he was discharged, he finally got to come down to the lobby to see Cora. He only got to see her 3 times in the 6weeks he was at that hospital.
The rehab was still down in Indy so we headed to yet another Airbnb. Overall, Cora spent more time living in Airbnb’s than she did at home in her first 4 months of life. Tom worked so hard in rehab and got to see Cora every day. He was much more himself and more positive getting up and out of bed, even in the wheelchair. He got really good at his transfers and loved the standing frame. My background in PT really helped us get a lot more freedom around the rehab.
He finally came home on May 17th. What a relief. However, our home was only slightly accessible. He could get into the house, the kitchen, living room, and his office. But he couldn’t get into our bedroom or either bathroom. Luckily, we didn’t have any stairs. So, we set up his bed in his office. And my uncle set up a shower for him out in our garage. And we tried to live a “normal” life.
Tom needed help dressing and bathing and toileting. Again, my PT background came in handy. My mom continued to stay with us because Cora, who was 4 months old by this point, needed someone with her while I took care of Tom. The summer of 2024 was pretty much me going back and forth between Cora and Tom, because if he didn’t need something then she did, and vice versa. If I had a minute in between I would be calling doctors and making appointments and paying medical bills. The evenings were especially tough because that was when we needed to do Tom’s bowel program and shower…but that was when Cora wanted me too. I really struggled mentally, just like I did when he was in the hospital, to not be there when either of them needed me.
By the end of June, the miracle oral medication had stopped working. The tumor on Tom’s neck began to grow again. He was started on a new infusion combined with an oral medication. The side effects were awful. He continued to have fevers on and off, but it was summer and paraplegia can cause issues with temperature regulation so we didn’t assume it was anything serious. He was already on antibiotics long term from that possible infection back in April, and I felt like we were hanging on by a thread, but doing all we could do.
By August, the side effects of the medication were too severe. Tom could barely eat because of the sores in his mouth. So, the doctor had us stop it. Within days the tumor on his neck was growing again, and who knew what was going on, on the inside. It took 10 days for them to figure out the next plan of action, and Tom’s pain and the size of the tumor increased significantly in that time. We were terrified.
Finally, they decided that trying chemo was a good option, and because he was still taking steroids they started with a really low dose. The tumor on his neck disappeared! We were so encouraged that the chemo had such an effect on it. He could be on low dose chemo for a long long time.
But the damage had already been done. The day after Labor Day, Tom was really struggling with pain and anxiety. We called an ambulance to take him back to the ER. They did more scans and found that in those 10 days without medication, the cancer spread the rest of the way up his spine. There were also pockets of infection at the top and bottom his spine, and a screw was coming loose at the top of his fusion. There was no longer anything they could do to treat the cancer long term, and he was declared terminal. Fixing the infection would require taking all the hardware back out and replacing it. That’s another major surgery I doubted any surgeon would take on, and another long stay in Indy away from Cora. The chemo could keep the cancer at bay, but there was only a small chance that the infection would improve with IV antibiotics. It’s not generally a great idea to get chemo while on antibiotics either. But we had to try to give him as much time as we could with our baby girl. So, I learned how to administer the antibiotics into his PICC line, and we went back home.
Well, not really home. The day he went back into the hospital, they started demolition on our house. We had spent all summer planning a renovation that would make our home completely accessible for Tom. We moved in with his mom who lives just down the road in the meantime.
Tom continued to struggle with pain and anxiety particularly at night. I learned from his palliative nurse what “terminal restlessness” is. It’s basically where your body has had enough, but your spirit is so strong it’s not giving up the fight. This causes such an internal conflict that usually results in agitation, sadness, and fear. Especially in formerly strong and healthy hardworking males. Tom.
5 days after we celebrated our 6-year wedding anniversary, we decided to have an impromptu meeting with a hospice nurse. I was so concerned about his pain, but he wanted to keep the avenue to chemo open in case the tumors started to grow again. The nurse immediately saw how much pain Tom was in and recommended inpatient hospice. Tom didn’t want to be the one to make the decision, but I could see he was desperate for relief. So, I took him to the inpatient facility that night.
They treated his pain and anxiety, and he was out of it for a few days while he caught up on sleep. But slowly his body gave up. He slept more, drank less, and ate even less. But he would perk up when Cora came to visit every day. He would still have moments of agitation and insist on getting out of bed, but was no longer able to help with transfers. We got him into his wheelchair with the help of a Hoyer lift the last few times. Finally, it was time to come home. Tom had been begging to leave for days.
Once he came home, he never really woke up again. He would stir when we gave him meds, and occasionally would become agitated and try to speak, though we couldn’t understand him. He went to heaven just before 2 am on October 9th, 2024.
The love of my life, my best friend, the father of my children. Gone.
I’m still figuring out how to survive this. Day by day. Having a piece of him in Cora helps. She is the only reason I get out of bed in the morning. She wasn’t quite 9 months old when he died. She will only know our memories of him. I am comforted that he gets to be a father to the babies we lost in heaven. But the unfair reality that Cora doesn’t get to grow up with him as a father smacks me in the face all day, every day. If only that first baby could have survived, he would have one child who could maybe have remembered him a little. I’m just so sad she’s missing that huge part of her life, already at a disadvantage at such a young age. But the gratitude I have that she is here with me, is indescribable.
Grief is the price we pay for love.