Randi met her husband, Paul, when she was 10, and by 15, knew he was the one for her. So, when he was diagnosed with glioblastoma 31 years later, she was shattered. Now Director of Caregiver Support at Montefiore Medical Center, she helps others deal with the challenges of being a caregiver.
My first experience with being a caregiver was when I was 17 and my mother was diagnosed with breast cancer. It was never spoken, but she become my responsibility. I was about to go away to college, but my focus became making sure Mom was okay. She recovered and went back to work, but I was really struck with the enormity of what needed to be done and the sudden role reversal. So, in 2004, when my healthy, vibrant husband came home from work with a brain tumor, it just sucked me out of the universe as we knew it into a very frightening world.
It took only two days to figure out what was going on. On Wednesday, he had trouble buttoning his shirt and thought maybe there was too much starch in his laundry. On Friday at his office, he was getting ready to make a phone call and the phone just fell out of his hand. A colleague noticed that his mouth was drooping on one side. Paul called me and I called a doctor friend at Montefiore who suggested he get an MRI to give us peace of mind. Paul went to a local, stand-alone radiology office for the test.
Hysterical on the Inside
He brought the film home with him and I remember feeling incredibly nauseous looking at the image and seeing a sizable mass in his brain. I really felt as though I was going to fall. We had three daughters, the youngest only eight at the time, and I just knew nothing was going to be the same, for them or for me.
Paul was very measured. He was always the one everyone relied on for strength. But I was very emotional and started to panic. “We will figure this out,” he said. We all prayed that it would be benign and let ourselves believe that as long as we could. Then, we called our extended network of friends and identified a surgeon at Montefiore that we wanted to work with. Paul was very pragmatic and his way of dealing with it all was to remain calm, but I knew that he was worried. Meanwhile, I was unbelievably frightened and couldn’t imagine how I would survive if anything happened to him. I was hysterical on the inside, truly terrified, but maintained a calm exterior.
Our oldest daughter came home from college that same evening for spring break. We told the kids what was going on and assured them we would always tell them the truth. I also assured them that I would always be there to take care of them, explaining that right now Dad needed a lot of my attention. The two older girls were frightened. They were mature enough to know that brain tumors are never good news. But the youngest just remembers that something frightening was going on and she felt left out. She didn’t understand it at all and focused on why we weren’t going out to dinner that night as originally planned.
Shock and Despair
I couldn’t imagine how I was going to do this. I had to do everything in my power to continue being a mother, but had be there for Paul 100% to advocate and partner in finding the best treatment. And, I had to be hypervigilant – both his nurse and his wife. I was terrified of the unknown but had to stay strong. Everything else just fell away. We knew we could rely on each other and we were strengthened by the adversity.
How do you take care of everyone else when your own needs are so great? I had a daughter in college, another looking at colleges and a young child at home. How do you help your husband with treatment when you are looking at colleges? I felt I had to operate on overdrive just to maintain a semblance of our normal routine. I called my closest friends and told them I needed them to step up.
Paul had surgery to remove the tumor and was home two days later, with no apparent compromise. He was highly functioning and never complained. We made a conscious decision to keep things positive for the girls, but despite his desire to go back to work, I insisted he follow the neurosurgeon’s orders and wouldn’t let him.
Worst Possible News
A week after the surgery we met with the doctor to learn the results of the pathology report. It was the worst possible news—glioblastoma. They said he had about a year. We just completely fell apart. We clung to each other and cried, the tears pouring down as we held onto each other in the doctor’s office. The despair was so great. How could this be happening? We were in utter shock.
We cried some more in the parking lot after we left the doctor but knew we would have to walk into the house looking okay. The girls would be home waiting for the news. We told them it was cancer and that we were going to find the best doctor in the country to treat it. We talked about how lucky we were to have access to great care. But, we didn’t mention how aggressive and deadly it was. Only to our oldest daughter did we say that it wasn’t a good cancer. She was going to go on the internet anyway, so we had to have age-appropriate conversations. At the time, none of them asked if it was fatal.
More Bad News
With the help of doctor friends, we researched and found the best possible treatment. Paul saw a doctor at Duke who prescribed 36 doses of stereotactic radiation, which he was able to get locally, and Temodar, a supposedly well-tolerated, life extending chemotherapy that would increase the effectiveness of the radiation. All the doctors were very encouraging that with this kind of treatment the cancer could be controlled. A research study that showed Temodar gave people a longer survival tim.
Unfortunately, Paul got sick at the end of the first cycle of the medication. The doctors weren’t certain it was the Temodar—he also was on high doses of steroids and medication to prevent an ulcer from the steroids—but he became very ill, weak and bright yellow. He had developed severe hepatitis and was at risk of going into liver failure. So, he had to stop. That was devastating news, but they said there was no way he could continue. They couldn’t put his liver at risk. We lost our greatest hope and weapon against the disease right away. He was scared and begged them to keep him on it. “Now what? How am I going to survive?”
I was scared too. I had three very close friends I could say anything to, and a doctor friend who we were very close to, so I didn’t feel totally alone. But I had to keep it together for the kids. And I never allowed myself to think that he could die—that would have been too overwhelming.
When he had the surgery, they had been able to remove about 97% of the tumor, which was a home run. Then, through the stereotactic radiation, they got rid of the remaining 3%. There were no visible signs of a tumor after radiation even though he had had to stop the Temodar. The doctor thought this was an excellent response, and we breathed a sigh of relief. Everyone was leading us to believe that his odds were very good. But with glioblastoma, it’s never really gone. There was a new immunotherapy vaccine being tested and his doctor was “cautiously optimistic” that it would work for Paul and keep the cancer from coming back. “If everything goes well,” he said, “Paul could beat the most optimistic five-year-survival rate.” For almost six months he had completely clean scans.
During that time, it seemed that things were almost normal. But, they weren’t really. He was still recovering from the hepatitis and napping a lot for about a month. After that, he started the vaccine and we traveled to Duke every month for appointments with his doctors. Then, suddenly, they picked up something on a scan. It looked like the cancer was back.
We tried not to panic, but once again, it was devastating news. The team recommended he have a second surgery, this time at Duke. We left the kids, which was very unsettling, and went down to Duke. The idea was to implant thin wafers in his brain that would release chemotherapy right at the site of the tumor. But when they got in there, it wasn’t really disease progression. His doctor was dancing with joy. There was a trace of cancer cells, which is to be expected with glioblastoma, but what they saw on the MRI actually was an infection.
So, he started on IV antibiotics, which continued for months, and they took him out of the vaccine trial. While we were relieved there was no sign of progression, we were devastated all over again. The vaccine seemed to be working, and it seemed unfair to stop the trial treatment. Despite all our questioning and insisting, they wouldn’t let him continue in the trial. The infection introduced a complication that meant he no longer qualified to participate. Instead, they started him on what we knew was a palliative chemo in the hope that it would give him some time. To say that we were crushed would be an understatement.
Along the way, he developed elevated liver enzymes that no one could explain. A CT scan and an ultrasound of his liver looked okay, so no one thought it was cancer, but they scheduled him for a biopsy just to be sure. The morning of the biopsy, he woke up with a fever of 102, but they wanted to do the biopsy anyway. When he came out of the procedure, his blood pressure crashed, his fever spiked to 105 and he became delirious and was rushed to the ER.
When he had awakened with fever that morning, I had called his team at Duke and they had said to get him on Vancomycin immediately. I made sure that it happened right away—that’s what I mean about being a nurse and a wife. It took them a couple of days to figure it out, but it turned out to be listeria meningitis. Montefiore told us he was going to die, but he didn’t, possibly because of getting on the Vancomycin right away.
Nothing Goes Right
He was really sick for two weeks, including being in a coma for three days. They told me at the time that if he came out of it, which they didn’t think he would, he could be deaf, blind, paralyzed and/or even severely cognitively impaired. It was devastating. You can’t prepare for news like that, just like you can’t prepare for someone to die. Then one morning he woke up and said to the nurse, “Can you call my wife and ask her to bring me the Sunday crossword puzzle and a pen?” Somehow, he knew it was Sunday—he was back. But when I got a call so early in the morning, I thought it was because he had died. I was overjoyed and we all started crying. It also happened to be our anniversary—22 years of marriage.
I was determined that I was going to find a way to save his life. I read every journal or article I could find, in print or online — I read for hours. But there wasn’t anything that seemed to offer hope. After the meningitis episode, he went back to work, and a few months went by. He was still taking the chemo and mostly had good days. I was watching him all the time and it seemed that there was never a moment when everything was all right.
At one point, he became so fatigued he was dragging through his days. One doctor suggested it was because he was still recovering from radiation, another thought the steroids were masking an infection. But it turned out to be adrenal insufficiency. He had become steroid dependent after months on them as part of treatment. Of all the things that could have gone right, nothing did.
No More Treatment
That summer, we had rented a house in the Berkshires with friends. We had the summer together and it was lovely. Towards the end of August, our oldest daughter drove him down to Montefiore for an MRI on Thursday. We got the results on Friday and three different doctors signed off on it. There were no visible signs of tumor in his brain. But he didn’t feel well—his stomach really hurt him, and I knew it had to be bad for him to tell me. We were supposed to be taking our middle daughter off to college on Sunday, but he didn’t think he could do it. “I promise I will be there for parent’s weekend,” he told her. So, I drove her to school, and took the other girls with me, and our friend took Paul to the local hospital for a CT of his abdomen.
I drove four hours from the Berkshires to Boston never hearing what was going on. I was afraid he had died at the hospital and that our friend wasn’t telling me so I could get through the day. Then, I was driving home with the kids, making believe that everything was going to be fine. Eventually, I got the call—they had found a 10 cm mass in his liver. When I arrived back in the Berkshires, our dear friend, an attending at Montefiore, and I drove him down there, arriving at 1:00 am. They got him rehydrated, controlled his pain, and scheduled him for another liver biopsy. The oncology team said, “I bet the farm it’s benign.” It didn’t look like a solid mass. But, Paul said to me, “It doesn’t matter what they think. I know it’s in my liver. I’m done. No more treatment.”
Foiled by Glioblastoma
He had the biopsy Tuesday. Wednesday they told us it was cancer. And on Friday, they told us it was the glioblastoma in his liver. He was stable, so on Saturday, Sara went back to college, and at his insistence, I went to pack up the rented house with our friends. But when I called him that night, he sounded really weak. It happened so fast. He was so much worse when I got back, and kept deteriorating right before our eyes. He became septic. His kidneys stopped functioning. He was intubated because he was breathing so heavily. He went into multi-organ failure.
Sunday morning, he told relatives and staff, “Tell my wife to get here quickly. She needs to get here quickly.” When I arrived, I couldn’t believe how bad he looked. I held his hand and asked, “What’s happening?” and he said, “I’m dying.” His body had foiled my great attempt to save him, to outsmart glioblastoma. He died within 36 hours.
More Powerful Than Love
The only way I have made peace with not being there on that Saturday or being more on top of his care, was the fact that the brain cancer had spread to his liver. There was no hope. The girls all got to see him before he died, and we had had the summer together, but it was devastating. It was so hard coming to terms with what’s possible versus what is not possible, not in my control. That the disease was more powerful than the most powerful love that can exist between two people. But I came to understand that I had done all I could for him, and the doctors did all they could.
You don’t stop breathing when something like that happens. You are still there, and you have to do what you have to do. I had to be there for the kids. If not, I think it would have been hard to get out of bed. Even the older two in college, they still needed me. I told them we were all going on with our lives, as Daddy would have wanted. Another dear friend gave them their marching orders in his powerful eulogy. I wanted them in therapy and back in school so that they could get on with their lives. For close to a year, I would cry every night. And when I had finally fallen asleep, I would wake up crying the next morning.
My friends were very good, dropping off food and taking care of me, and I saw a therapist, but there was this existential aloneness that was overwhelming. I had been with him since I was 15 and really didn’t know life without him. I had always felt safe in his presence, and now he wasn’t there.
It took five years for life to begin to feel okay again. During that time, I had no joy, other than the kids. A friend mentioned that she hadn’t seen me smile for years. At some point, I finally started on antidepressants, something my therapist had been encouraging all along. I think I was afraid that if they didn’t work, I would have no safety valve and have to live with the overwhelming pain forever. But after a few weeks on the medication, I noticed that the weight was a little lighter. I had turned a corner.
It was around that time that I was offered a position starting a Caregiver Support Center at Montefiore. How could I turn it down? I knew how important it was. And it has allowed me to help people understand that you don’t get a medal for being a martyr. Through this program, we can really help the ones that are helping others. It is a great gift that I understand the depth of pain they are experiencing. And I feel privileged to be providing a safe oasis for caregivers, something I didn’t have.
You don’t have a choice about getting something like glioblastoma, but you have a choice of how you get through it. Despite how absolutely crushing it is, there is a way to make it through it. After a death, you are never the same, but rather than shying away from your fears, you can find whatever resilience you have deep inside and use that to grow.
We’re Still Us
When I went to the therapist 14 days after Paul died, I cried and cried. After two hours he asked, “Are you wearing underwear?” I couldn’t imagine why that was relevant, but when I said yes, he said, “Then you are doing very well.” I laugh now, but when I look back, I realize that I had more strength than I ever imagined. I would have thought I couldn’t handle it or manage anything afterwards, but I did. There were always two voices in my head – “I can’t do this” and “I have to do this.” I would get up in the morning and make the bed right away, just to show myself that I was functioning.
It’s changed over time for me. I’m not the same and never will be the same. The pain and loss remain, but it doesn’t feel as though the bomb just hit. At significant times in life, the feelings get stirred up again. My oldest daughter is getting married in a couple of weeks. I will feel Paul’s absence acutely. We all will. And it will be hard without him. I’m sure I will be choked up, but the reality is that loss changes us. But we’re still us.
I am happy to report that we honored his memory in our wedding toasts. We had special photos of our intact family of five at the wedding and his presence was felt by all. Life is not the same. How could it be? But, alongside the sadness and yearning, joy has returned to our lives. Cancer robbed us, robbed Paul. But cancer can not destroy love.
The Caregiver Support Center at Montefiore Medical Center offers educational materials and emotional support in a tranquil environment where those caring for patients with any kind of illness can unwind and regain their strength.