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Editor’s note: Keeva Segal has been a caregiver for his wife with pancreatic cancer and shared this story about his experience.
By Keeva Segal
“No good deed goes unpunished.” -- Clare Booth Luce
“It is only the giving that makes you what you are.” -- Ian Anderson
Why would those quotes be the best way to start this story? A story about how I lost and then found myself through caregiving for Carole as she fought pancreatic cancer. Well, you’ll just have to read on. They are seemingly in opposition. But they’re not. Where they meet, how they complement each other – that is the Zen of caregiving. That is the heart of it.
Like every caregiver story, this one starts with the diagnosis. But this is not about Carole or the cancer or the treatments. It is about me as a caregiver and where my journey took me. Spoiler alert: therapy.
Odds are, if you are reading this, you are caregiving for a cancer patient or you are a cancer patient. This means that at some point recently you heard the words you most feared: “Unfortunately, it’s cancer.”
And there it is. That earth-stopping, life-changing moment that you never wanted. It is one of those moments that you remember in vivid detail. Where you were, when, the exact words you heard and that moment where you stopped. Stopped processing, stopped thinking, stopped breathing. Just stopped.
At that exact moment, I had no idea what was coming for me, for Carole or our family. I only knew that it was coming and had to be dealt with. And I would have to deal with it.
Then, like every other caregiver ever, I took my first step in caregiving and started asking questions. Lots of them. There would be more questions than answers most days. That is just the fact.
Let me caution you right off the top: caregiving is lonely. You might have already started to notice. Acknowledge it and let it be. You have more important stuff to deal with. On those days that the loneliness bothered me, I recalled the days when I really didn’t want to talk to anyone. I was never alone. I always had Carole, my sisters and some amazingly good friends, but I was lonely a lot. Caregiving is like that.
A warning for patients and caregivers – the internet is not a reliable medical source. Sure, there is some very good information, like on the web site for the Pancreatic Cancer Action Network. They verify – with actual doctors – what they publish. But the popular medical info web sites, blogs and such are not as reliable. I strongly recommend not using the internet for medical research. You have actual doctors and nurses at your disposal. Ask them.
A word about nurses before I really get started. Nurses are the heart and soul of healthcare. Yes, the doctors are important and do direct the care, but it is the nurses that make it happen. They deserve all the respect and kindness in the world. Remember, they are highly educated and trained medical professionals. And they really do want to help. Do not bad mouth the doctors to them. It puts them in a very uncomfortable spot professionally.
A note on the doctors. We were referred to them one at a time. Since we needed an endoscopic surgeon to do the biopsy, we wanted the best. That one was easy to find since there are only a handful here. He referred us to our oncologist and gastroenterologist. Our oncologist recommended the surgeon. And so on. As we got their names, we researched them intensely using the internet (This was the only thing I looked up online. I never once looked up a medical question. I had actual doctors and nurses.), asking our regular doctors and getting references.
Back to my story. There I stood in the surgery waiting room, looking at the doctor and clutching onto my sister because she was the only stable thing in my world right then. The doctor gave me some more information – the type of cancer and the other procedures he did because it was cancer.
He also gave me the option of me telling her or him doing so. I chose to tell her. I believe that bad news is easier when it comes from a loved one. Once she was in the recovery room, I went in with my sister to tell her. She was awake and immediately asked what the verdict was. We do not believe in tip-toeing around with news like this. I conveyed the doctor’s words, and we had our moment there in the recovery room to the tune of beeps, boops and buzzes.
I am not going to deep dive into medical information here. This is not about that. And every case is different enough to warrant caution in communicating medical detail. What happened to us in our battle against pancreatic cancer is different from every other cancer patient’s experiences on the medical detail side.
Immediately post-diagnosis was a very busy and emotional time. Carole was still in hospital, so I had time to prepare. There were so many things to be learned and done and dealt with and figured out. In this short time, I decided – partially consciously and partially sub-consciously – to fling myself into doing this right. What I did not know then but have learned through therapy is that I set myself aside and became a full-time, 100 percent caregiver. Which sounds good and appropriate on diagnosis day. It isn’t.
I am still sorting some of it out in my mind. But one of the things that happens is you have to tell family and friends. This was a real chore, to be honest. Everyone I told – everyone – apparently had some oncology training, because all of them wanted to tell us how to proceed. Oddly, none of them are actual medical professionals. Well, except our good friend Jim. He is a retired nurse (40 plus years!) and, while he offered advice, he never pretended to know more than he knew.
Here is the thing about family and friends when cancer is the issue. They all want to help. Really, they do, and they are sincere. It is up to you to decide whether or not to act on their suggestions. Some are very good, and some are just awful. Most are in the middle.
During those first couple of days, we were bombarded with important information from the doctors and nurses. The nature of the cancer. The medications. We met with our oncologist, who specializes in gastrointestinal cancers, including pancreatic. We met with our gastroenterologist. We got reams of paper. The attending doctor came in to give us instructions on the fentanyl patches and other medications. Sometimes I felt like I was being trained to operate a nuclear reactor.
I went from having the average lay person’s knowledge of medicine to knowing all manner of terms and treatments and side effects and more. I read every document they gave us. I asked a lot of questions, especially when it came to her day-to-day care requirements. Obviously I asked about the medical side, but since my daily priority is her care, that is where I focused.
This is where – had I been paying attention – I should have noticed that I was losing myself in caregiving. As her needs increased, I pushed myself further and further into the background. While she was still in hospital recuperating from the endoscopy, there were many phone calls to be made. Family, friends, business associates. The list goes on and on.
As I notified people, there were the somewhat mandatory offers of help. Most were sincere at the time and meant as kind words in a difficult time. However, some really stick out. The one that I think typifies a large part of the genuine loneliness that comes with caregiving is when someone says, “We’ll organize and make a schedule so you are not alone on this.” I say this without malice, but don’t rely on that to happen, because it most likely won’t. As we found out over the months, we were pretty much on this trek alone.
Do I harbor anger or ill will over this? Not anymore. Am I willing to create more ill will by making an issue of it? No. While it rankled at the time, it is also yesterday’s news. It did become a topic in therapy for me, but that is my problem. They are still family and friends and I still love all of them. I have no desire to launch a battle over it, nor will I hesitate to help them whenever they need it. If anything, it pushed me to be a better person and to work harder at it. But it still stings. You know, they meant well, bless their hearts.
So, Carole and I launched into the world of cancer treatment. We met with our oncologist and went over his treatment plan. When we discussed the chemo, we got all of the side effect warnings and such. Including a stack of paper that were the information sheets on the chemo drugs. I read them. All of them.
Once her Infusaport was in and healed, it was time to start chemo. In our case, she got a full day of chemo at the cancer center and then came home with a pump that infused a slow drip of chemo for 50 hours. Then we would go back, have the pump removed and the port flushed. Sounds a lot easier than it was.
So, she got her first chemo treatment and came home with the pump. We knew about the side effects and had an idea what to expect. We thought we did. Throughout the first course of chemo treatments, she had extreme side effects. There were two hospitalizations.
It was during the first hospital stay that people started to tell me I should see a therapist. I rejected it out of hand. “I’m fine.” I wasn’t. When Carole would tell someone the things I was doing for her, I would wave it off with a, “It’s nothing.” It is something. I was fooling myself into thinking this was some kind of normal and I could handle all of it. I was wrong.
I was already shoulders deep in the caregiving and did not notice. There was almost no me left in my life. I do not say that negatively or as predicate to blame. It is just the fact. I became Caregiver and sort of stopped being Keeva. And I did not see it. I was lost. I was broken. I had no clue.
During her second hospital stay -- a lengthy one – I arranged for the cancer center’s staff psychologists to stop in and see Carole daily on rounds. She had severe depression, somewhat caused by a physical enzyme issue that pancreatic cancer causes. And, of course, somewhat caused by the simple fact that cancer is depressing.
Sometime during those three weeks, the nurses started to suggest I not visit every day and take a day off. My sisters echoed this. I, of course, having now completely lost myself in the caregiving, resisted. I was absolutely sure I had control of the situation, even though – in hindsight – it was the reverse. After a lot of pushing from the nurses and sisters, I took a day off from visiting.
I sat around and had no idea what to do. I cleaned and organized. But again, looking back, I had nothing. While I did not see it at the time, I didn’t know what to do because I had forgotten how to do things for me. It is important to note here that a lot of these realizations happened in the therapy that I was not yet in. But I would be soon enough.
I want to relate one story of that particular hospital stay that I think really illustrates runaway caregiver mode. One of the issues she had during that long stay was she did not really want to eat. It was getting serious. One of the nurses suggested I cook her favorite breakfast at home and bring it in the next morning. French toast.
But, being in runaway caregiver mode, I not only made her the French toast, I brought her favorite syrup in a proper metal pitcher, softened butter and our actual daily dishes and flatware. I had a homemade fruit cup and her favorite drinking glass. I swept into that room, cleared the little tray table and set her place like it was a picnic in the Hamptons. Overboard would be a kind description.
During that stay, I was visiting one day and this doctor I had not met – but obviously had seen Carole before – came by her room. She introduced herself as one of the psychologists. We started chatting and such. I did not know it then, but I had just started therapy.
Once Carole was home from that stay, we discussed her need to see the psychologist. She countered that I needed therapy just as much. By now, my sisters pretty much started every conversation with, “Are you in therapy yet?” So, I made an appointment. Skeptically. After all, I was Caregiver. Invincible. And wrong.
One thing to look for when seeking therapy is to try to find someone that specializes in cancer and caregivers. Your oncologist should be able to refer one. My psychologist does focus her practice on cancer and caregivers, which made it so much easier to start our conversation.
That first session was difficult. I had spent most of my life rejecting therapy and, added to my extreme caregiver attitude, I was not exactly receptive. But I tried to have an open mind. In the first couple of sessions, she was able to get me to acknowledge that I had lost myself. And she asked one question. One. It haunted me then and still does. “What would you do for yourself?” I had no idea. I could not answer. It was the first time since the diagnosis that I had been forced to think about myself.
I still have trouble with that question, but I now spend time reflecting on it. And I am making progress, because in the course of working on that one central question, I found myself again. But not the old me. A better version, who learned to care and give and take care of myself, too.
I am still in therapy. It has been many months. I am still working on myself and trying for that balance between caregiving and living. But I have help. I could not do this myself.
Which brings me back to those two quotes at the beginning. Caregiving is perhaps the ultimate good deed. It is born of love and concern and no expectation of reward. But there is punishment aplenty. It does not mean don’t do the good. It just means try to foresee the consequence and head it off. Which is the second quote. Because, at the end of all things, it is what you give that makes your mark on people and the world.
They intersect neatly in the life of the caregiver. You give because you care, and you do the good deed because the consequence to you is nothing compared to the importance of the task. And it is that giving that makes you what you are – a special person who can honestly say, “I put them first because they needed it.”
That is the essence, the heart, the Zen of caregiving. Doing it selflessly because they need it. It is at that intersection of no good deed going unpunished and doing the good deed anyway because you want to give that is the spark of the caregiver.
I would know none of this self-realization and perspective were it not for getting myself into therapy. That may well be the biggest thing I have done for myself this last year and one of the most significant ever. I only wish I had gotten over myself and into therapy sooner.
Don’t let anyone else’s reaction or opinion affect you getting into therapy. I am sure I had elements of that when I was rejecting therapy. Well, I was wrong. There is no shame, embarrassment or anything else. You are seeing a doctor.
So, do give. Do that good deed. Define yourself through your giving, but be careful not to lose yourself the way I did. But do not try to shoulder this burden alone. As lonely as you feel, you are never alone.
There is always help when you need it. Whether it is physical help from family and friends or the support of a therapist, there is help. You only need to ask. And it is that asking, that recognition that you need help, that you are not superhuman, that is what will keep you from getting lost in your task.
No matter how much care and time your loved one needs, you need some, too. It is not selfish or bad to take that time and have that break.
One of my sisters summed it up rather neatly in her pushing me to therapy. She said, “Carole will get better and healthy again. We need you to be whole, too.”
She was right.
— Keeva Segal
