Here is a chapter from my new book, soon to be published, all about my dear brother Peter’s walk with cancer that ended in his premature death in September 2015. Though you might find the read of some help and inspiration to open even more to the human reality of dying and death.
Chemosabe and Taunto, Riding Side Saddle with Cancer
Part Two – Here We Go Again
What Happened? I was in Remission wasn’t I?
“Soon enough my own ‘Emancipation Day’ arrived. I said my goodbyes and made my way home to await the results of my final tests. It took quite some time. Three months passed before my oncologist advised me that I was in remission. Obviously, I was relieved. April and I celebrated.”
Both Peter and April felt the profound relief that comes with hearing cancer is in remission. All of us were breathing much easier knowing Peter’s cancer had been beaten back. From his kids to his Mom, his work associates to me, and everyone in between there was a collective yahoo and a sigh of relief as life could get back to ‘normal’- dying and death had been averted, at least temporarily.
The respite was short lived in my world, yet in Peter’s world of walking with cancer 2 years was much like a lifetime. Cancer had reared its head again. It had morphed and migrated and found its way into his bone structure, continuing its unrelenting march through Peter’s body almost at will even given all that the medical system had thrown at it so far.
The Summer of 2014 – Not Again!
Things started to go sideways. Peter’s body began to show signs that cancer was knocking on the door, again. There was a lump here and a lump there and tenderness and pain was developing. The cancer had migrated to Peter’s upper body and now he was looking at Hodgkin and Non-Hodgkin’s lymphoma in his neck, underarm, shoulder, and chest.
“How the hell do I tell my family that the battle is back on?” he must have thought.
Peter was reluctant to speak to his family and friends with the exception of April and myself. Though I didn’t agree with his lack of willingness to speak out about the return of cancer, I totally understood it. Stepping back into the ring with the Mike Tyson of cancer was not an appealing thought for Peter, never mind for the rest of us. He didn’t want to alarm any of us by bring the cancer card back on the table where we would all have to face it – cancer to again become the topic of way too many conversations.
No matter how he would phrase it, what words he would chose, what tone of voice he would use, there was no doubt the alarm bells would ring in his family life, his work life, and his social life.
On Aug 17, 2014, at 7:25 PM, Peter Garrett wrote:
Things are starting to move quickly….
For the past week I have had very little sleep due to the pain the cancer is causing in various parts of my body. Then last Thursday night, there was such intense pain in my chest that I felt like I was having a heart attack. After I talked myself out of going to Emergency (they would have been disappointed I didn’t arrive with cookies…) I palpated the area and found that there was pain in the ribs in that area, and some neuropathy in the muscle tissue. Clearly the cancer was targeting a new area.
It underscored that perhaps Dr. Villa (my oncologist) was correct about there being a short window of opportunity and waiting another 2 1/2 weeks to get into an alternative clinic was probably now the poorer choice. Who knows how much more damage the cancer might cause by then? I might not even be able to travel.
Sooo, I have reluctantly agreed to undergo the chemo protocol that deals with diffuse large cell B lymphoma. I advised the Chemo Nurse on Friday and she has me booked to see Dr. Sally McDonald (she is the doctor who supervises all things chemo at the hospital) Tuesday morning at 10:00. Then I will start chemo (the first one is a two day extravaganza) either W/TH or TH/F next week (i.e. either the 20/21 or the 21/22). After that once every three weeks for a total of 4 1/2 months.
As this part of it has happened rather suddenly, I plan to be at work for the first week or so (or longer) depending on the severity of the side effects. In all likelihood I will be submitting a request for long-term disability sometime soon.
After making the decision, I felt a sense of relief and believe that this is the best decision under the circumstances. And out of respect for my mom, I have requested a prescription for marijuana (Carrie – make sure you tell her that!)
What a crazy ride this past few weeks have been!
LOve you all, Peter”
Death this time seemed even closer than before, closer for Peter for sure, and the loss of Peter for the rest of us felt even more pressing. This louder knocking on the door triggered some very human reactions in all of us:
Combativeness–Hope – Denial–Fear–Anger
- “We’ll beat this damn thing!”
- “The German’s have had great success with targeted chemo and stem celltreatments. I am sure it will work for Peter”
- “It can’t be happening to Peter again.”
- “No way! Not again!”
- “Maybe they mixed up the charts by mistake.”
- “Oh please, anyone but Peter. He doesn’t deserve this.”
- “Can’t it all be a bad mistake?”
- “I just don’t want to talk about it.”
- “Not again!”
- “How can God let this happen?”
No matter what the reactions were, there was no arguing – cancer was ferociously back and we all had to face its music. It seemed as if we vaulted from remission to battle without any warning at all. Cancer didn’t care though about any of our worries, concerns, or prayers. It was back in the family, again.
The uninvited and unwanted guest had returned.
Yes, we had to feel it all, notice our reactions, and find healthy ways to express ourselves – it is part and parcel of self-care and staying alive and present in the face of potential and probable death. We all had to simply get on with the reality of Peter’s life – cancer is back. What are our next steps along this unique and challenging path? Round three began, as did chemotherapy and all its attending nasty challenges.
Different Points of View
Peter was deflated. He so wanted a ‘normal’ life back, a life he could live fully. Scared, frightened, concerned, alarmed, panicked, confused, frustrated, pissed off, and angry, are other words that you could use to describe Peter’s emotional state. He hid all this under a mask of optimistic stoicism. Only the rare few were ‘invited’ to his innermost feelings.
He also didn’t want to alarm his family, so in a very real way he sheltered us all from the reality of his situation. He did his very best to stay positive and focused on beating cancer. Sure, he had a chemo doctor, but Peter was his own spin-doctor, doing what he could to limit the impact round three would have on the rest of us. He was always able to put a positive twist on things.
His humorous stoicism, was both noble and inspiring. It was only later that it would become problematic as he used these tools to protect his family from the reality of his health.
September 6, 2014 Sat Peter Garrett Text
“Hey Garrett Guys. Hope u r all having an amazing weekend. Back to the hair falling out stage so shaved it all off last night… just in time for winter. Ah, well good excuse to wear my Habs toques. Love ya. Peter.”
April The Wife
The feelings of celebration and relief, albeit a brief sanctuary from what had become a surreal and unknown journey for both of us was over – again. Momentary panic -what does this mean now? I remember slipping into the familiar territory of feeling panic and then focusing again on being present for Peter. We talked openly about our feelings, the changes in our plans, and the necessary adjustments to being in a life together with cancer. I knew that Peter would die – when and how were the unknowns and how to navigate through life knowing that the horrible eventuality would occur with the strength and conviction of Spirit we both needed was the challenge. It was service of the highest order and I felt honored to be able to be by his side.
My first reaction was, “Not again!” I was pissed off that Peter had to deal with cancer a third time. Hadn’t he gone through enough? I didn’t wish it were happening to me in his place, I am not that selfless. I just wished it wasn’t happening to him. Underneath my anger and upset lay a disturbing thought – “I don’t think he is going to make it.” Was this my way of preparing for the death of my brother, to sneak in this sort of thinking just in case? I kept shifting between being angry and pissed off and being deeply sad that this could be the end of Peter’s life.
Upset though I was, I stayed in touch with Peter regularly and checked in often. I did my best to put Peter and his life first before launching into my questions about his health – a lesson Peter had taught me earlier on in this wild roller coaster ride with cancer:
On 2013-03-22, at 6:53 AM, Peter Garrett wrote:
“As for informing people, I will do that at the time things turn even more serious (i.e. if my Oncologist advises that things have deteriorated and he feels there is no other option than immediate chemo). Once everyone knows, they treat you differently; all conversations focus on the cancer/your health; they look at you differently; many people avoid you because they can’t deal with it, etc – don’t get me wrong, most people are coming from a place of caring and that is awesome BUT the dynamics are immediately changed and it is very challenging to deal with. I have been down this path a couple of times now and I know how it works.”
I can’t even begin to imagine the relief and deep joy Peter and April experienced hearing the beautiful word, “remission”. It must feel like the second chance you were praying for, like it wasn’t your time after all. I am glad for them, that they experienced that joy.
The downside is, how much harder you must fall, hearing the words, “it’s back” and that deep disbelief, “here we go again”. I feel such deep sadness, not knowing personally, but having been witness to this one too many times, and knowing what this family endured, again.
I can’t help but wonder; In line with the rest of our death phobic society, April and Peter were perhaps ill-prepared for grief, death and dying. They may not have faced their mortality when they were young and healthy. So I wonder, if in these two years of supposed remission, had they carved out time for “The Talk”. I wonder if they had talked, planned, and prepared for life and end of life, discussed their beliefs about life and death, that living a full life has nothing to do with how long we are here, if they structured their life in such a way that they could live without each other, and celebrated the time they were together, would the rest of their journey through cancer have been very different?
How would it have looked if society i.e. health care professionals and everyone who touched their lives, were well-prepared for grief, death and dying, would April and Peter have been well supported in a decision not to fight the good fight to the bitter end? Would Peter’s “humorous stoicism” and his need to soften the blow for those he loved, not been necessary?
From my perspective as a nurse it looks like the deeper conversations around Peter’s health were missed. These deeper chats would have helped the family deal with the possibility of cancer returning as is more common than not. Now was the time for the quality versus quantity talk. A familiar refrain I often heard was, “We beat it the first time so we’ll beat it again.”
Because patients had first hand experience with the chemo regime, as did the medical system it was easy to slip right back into the chemo and radiation treatment plan. Doctors feeling comfortable in treatment, families feeling ‘hopeful’ that cancer can be beaten again we all miss the chance for a more meaningful and real conversation. The discomfort doctors feel about talking about dying and death, coupled with our own fear and denial of it close the door to dialogue that could help families plan better and plan with more reality.
I believe that planning for dying frees up emotional space for living.
It seems like just yesterday I got the news that my brother Peter had Non Hodgkin’s Lymphoma. My initial reaction was “thank goodness it can be beat.” It went into remission until another form of Lymphatic cancer appeared, and was more aggressive. Damn it I thought!! Why does Peter have to go through this!!
That was just over six years ago now. Peter’s battle with cancer was such an up and down, painful and exhausting journey over all that time. I couldn’t imagine what I would have done had it been me, and believe me I wanted it to be me not him. I worried about Peter and his wife April each and every day. I wanted to be there for them both every second of the day if I could. I felt like the universe had played a very cruel trick on my brother, his wife, our family, and his friends. How dare he get cancer and possibly die!!! Damn the universe and its tricks!!!
That was the beginning of my grief for Peter’s cancer battle.
“Mom, what was your first reaction when you learned of the return of Peter’s cancer?” I asked.
“Oh no, not again!” Marge recalled, “This is the third time, poor Pete.”
“I tend to go on hold emotionally and wait for further developments and clarification of what’s happening.” Mom said. “I listened to what Peter had to say and his plans for alternative therapy and thought it was worthwhile.”
“I had to stop and wait and see it through with him. I tried not to let Peter know of my worried feelings. I chose to go through it with him day by day,” Mom continued. “I didn’t want to add my emotions and worries to what he was already dealing with.”