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Mourning a future none of us is ever promised

Mourning a future none of us is ever promised

Posted by lfilipe on Jul 21, 2020 11:24 pm

Hello,

Apologies, this is kind of long; part of trying to process this. I am a newish father to a wonderfully curious and precocious 20 month old, and a high school teacher. And I love my dad, who is now a cancer patient.

My father noticed a small bump around his nipple four years ago but thought nothing of it, distracted by life in the interim. This fall, it had grown in size and he had a biopsy done that came back negative, something he wouldn't share with us until February. Then COVID hit. My dad, we would learn, had endured weeks without sleep - the growth had increased in size, and his fear of contracting COVID had prevented him from seeking medical attention. His mental health deteriorated in the interim, though he kept rationalizing that his negative biopsy meant he had little to worry about. It all came to a head in May, when he very solemnly called me over to his home and showed me the growth - it was large and red. It looked like a tumour, though my online searching had me hoping it was a cyst. I immediately encouraged him to get medical attention - he again rationalized that he felt no pain and did not want to contract COVID - and he eventually agreed, with a new ultrasound scheduled in two weeks.

The morning of his appointment my mother called me at 6 AM. My father was incoherent and she didn't know what to do. When I asked her to put him on the phone, he sounded like he was running on a treadmill while trying to speak through a running fan - his voice was shaking and was unable to string a sentence together. I rushed over there and found him running in the same spot, saying he wanted to be taken away and to die repeatedly. I eventually got him to sit down, and he sat there repeating the same phrase over and over again while staring at the wall. He eventually went quiet and would not interact with me - would not look me in the eyes, would not respond to any questions. EMS took him to the ER and he was released later that day. The lack of sleep, the worry about COVID, and the fear of what the ultrasound would reveal were too much. While at the ER they were made aware of the growth by my father and performed the ultrasound, but were unable to make a diagnosis of any kind. "It's... complicated," they said, referring him to the specialist breast clinic at St. Mike's. For the remainder of that day he seemed more himself, but as the new appointment date grew closer, he stopped sleeping again. I feared the worst, but we were able to make it to the appointment. There is something about wearing a mask that highlights a person's eyes so dramatically, and I will not forget the look of fear etched on them as we navigated the hospital, and other people, in reaching the clinic. When we arrived they asked if he was there for an ultrasound or biopsy. The word biopsy pushed my dad to spiral a bit - he said he should have come, that he had no pain, that he had a negative biopsy, that he didn't understand why he was at a breast cancer clinic. The doctor there explained that a needle positioned in the incorrect place could produce a false negative and that he was in the place for a diagnosis; they were the experts and could tell him for certain what was going on. He relented. They explained he could wait another month and gather himself, but I was growing worried my dad's solution to this was to ignore it longer. After some back and forth my father almost initiated a very unconventional breast exam in the waiting room before being led away to have it looked at. When the doctor returned he confirmed what we all thought - it was big and needed to be addressed. I asked if I could convince him to do the biopsy today, and was allowed to. I went in to speak to him for about 5 minutes, and he agreed, though I think as soon as I got to the room he was already ready to go through with it.

Time. I kept reminding him he had time on his side right now.

The biopsy confirmed it was cancer. Breast cancer. And that it was in the lymph nodes. I remember hearing slow growth (so much of this is harder to understand when filtered through another person) and that surgery would be needed. Up until the moment I dropped him off at the hospital, I wasn't certain he would go through with it. In anticipation of the surgery I was with my dad every day, trying to allay his fears about dying, finances and how he would write cheques after the surgery, phone calls he feared were hackers, concerns about his grandson, the pandemic, the food supply - it was clear the cancer was not the only health crisis he was facing. We addressed each one of them, sometimes multiple times. We talked about the pros and cons of the surgery and not doing the surgery. I am so proud of how he vocalized these fears, and how brave he was in facing all the securities we all face in our darkest moments, out loud. I gave him a photograph of him and my son, and asked him to write one reason why he was doing the surgery on the back of the photograph, and to take that with him to the surgery. I just remember how much my pride in him washed away a lot of the fear and uncertainty I was facing.

The surgery went really well - the removed the tumour and some extra areas, as well as the lymph nodes under his armpit. He was able to open and close the car door on his own, so we were all surprised by his initial recovery. The drainage tubes were a concern for him. I found them difficult as well, I can't imagine having them attached to me. His fears went from the fact they were draining too little to the fact they were draining too much. We went to the ER the night of the day of his surgery. I parked around the corner to sleep in the car until he was released (I was not allowed in with him.) He forgot his phone in the car and was left to ask strangers on the street for theirs so he could call me to get the phone back. I get so sad and tearful imagining that picture - my father, alone, with drainage tubes hanging out from under his shirt, a mask and those eyes; those eyes pleading with someone to show some mercy. He was released shortly after and we went home. The following morning he was back in the ER - he was awoken because some moisture on his pillow. His wound had bled through his shirt, and EMS came to take him to the ER. I came to learn later that the fear is blood loss for anemia, or enough to somehow lead to a stroke. This was just two days. So much to process.

My dad feared the tubes would stay forever. And of course, one was removed a few days later. A home nurse came to visit and help with wound care. Things were looking good, and he had his post-op appointment in a few weeks. Then another early morning phone call.

My dad had not been sleeping again. He awoke a morning in early July and began to proclaim we were all going to die. Everyone. My mother. Me. My wife. My sister. And my grandson would be left alone. He eventually lay himself down on the ground, not moving. My mom called 911 on her own this time. "He just needs sleep," we all thought. I cancelled all plans and readied myself to pick him up later that day. The call never came. My dad ended up in a psychiatric ward for two weeks. While there the concern about the cancer almost became secondary. We were unable to get a clear picture of what was happening to him, in part because it was filtered through his own words and he did not have a grasp on reality. They were concerned the brain had spread to his brain, through the bloodstream, resulting in these mental health episodes - I frantically did more online searches as this was not a concept I had ever heard of. I was lacking any real schema for understanding this in any way. A CAT and CT scan came back negative. My whole family sighed an enormous sigh of relief for something we never thought we would consider to be good news: "your dad does not have brain cancer."

So our focus turned to his mental health. He became medically catatonic at different points, unresponsive to the outside world and the procedures and tests and treatments I was briefed on were like being briefed on a mini medical degree. But, eventually, he slowly started to seem more and more like himself. His paranoia gave way to his humour; his crying at the start of every Zoom call turned into a smile; his reclusiveness became engagement with others; his fear about death replaced by his concern for his beloved tomato garden that had already begun to bear fruit in his absence. His staples from his surgical wound were removed; it was healing well, and the drainage tube was almost ready to come out. And today, we learned he would be home by the end of the week.

But.

But we also learned further scans had revealed a lesion on his rib. The cancer had spread, but not to the brain; it spread to his rib. Stage 4 I remember hearing. "There are five stages, right?" I thought. I searched online when I should not have searched online. Aggressive radiation followed by tamoxifen. My dad had asked the oncologist to call me to get my advice before he proceeded. I remembered being in that St. Mike's waiting room with him and reminding him of the benefit of time. The tamoxifen could have a negative impact on his mood, which was of obvious concern because of what he had just endured, so it made sense to start it immediately, while he was still in their care for the remainder of the week to watch for any changes. He agreed when I spoke to him; my focus on his eyes replaced by my almost exclusive focus on his voice; a voice that had seemed to grow frail over the last few weeks.

I am still trying to process all of this and what it means. They seemed hopeful; it spread to a bone, not the blood. It won't be cured, but can be treated and managed. I'm not thinking about what we will do over the next decade, but what we can do each week. I feel like I am mourning a future none of us is ever promised. 

My dad the cancer patient; my dad the marathon runner; my dad the grandfather. My dad.

I have no idea if this is a proper introduction, but it has given me a focus that wasn't just crying and falling down the internet search rabbit hole, and I am feeling a bit better at the moment. It has been a lot. And my mind is now turning to navigating all of this with my dad - taking him to appointments, deconstructing medical information, encouraging him on the harder days - during a pandemic, and my fears about him getting sick with something other than cancer, while facing the unknowns of the fall and what it will bring for our family.

Thanks for reading,

Luis

Re: Mourning a future none of us is ever promised

Posted by Laika57 on Jul 22, 2020 12:10 am

Hi Luis lfilipe‍ 
Welcome to the forum noone wants to be a part of. It is a welcoming and supportive place though. 
your journey mirrors my own quite a bit, though not in the specifics.
have the doctors talked to you about delirium? It sounds like that's what your dad had. The paranoia, delusions etc. Can be brought on by medications, anaesthesia and infections. 
I mention this, because my husband's cancer journey started with delirium. I know what it's like sitting there for a month while they're trying to sort out his mental state and pretty much ignoring the cancer.
he's had several relapses, Usually accompanied by lethargy and a blood borne e coli infection.
I don't mean to scare you, but those are symptoms to keep an eye out for if he goes through chemo. Keep an eye on his temperature, and mental state.
enjoy the good days. Dont borrow trouble that hasn't happened yet.
Still, have the "what if" conversations. Find out just how much treatment and complications he is willing to go through. What are dealbreakers, what kinds of odds is he ok with. Sort out POA and DNR when he is still capable to decide for himself.
then go for ice cream and do whatever else you should be doing to live well and create memories. The things everyone should be doing not just those who worry about a prognosis...

best of luck.

Karin
Have you hugged your dog today?

Re: Mourning a future none of us is ever promised

Posted by Essjay on Jul 22, 2020 8:12 am

lfilipe‍ such a beautiful introduction. The love for your father and the understanding you have for his mental state as much as his physical state is so compassionate. You are absolutely the right person to be in his corner, you can see through what he’s saying to what he’s feeling, and you can calm him.

He seems to be getting good support and treatment for his mental state which will help him face this battle.

Male breast cancer...so little understood because it accounts for just 1% breast cancer cases. 

There is a metastatic breast cancer thread on here which may help you - you will find some posts there from individuals who are living with stage 4 breast cancer, including some who have spots in their bones MicheQuarantineAndMe‍ and CJ 123‍ who have been active on this site recently.

And I’d like to introduce you to a couple of male breast cancer patients WestCoastSailor‍ and Exetah‍ (who has been through chemo recently).

And I encourage you to take a look at the posts by caregivers

Number one advice for caregivers is to take care of yourself so you can care for your loved one, so the most important question is how are you doing today? Is there anything you need?

Know that we are here for you, there is almost always someone online somewhere who will respond to a question or a rant, or a plea for help!

best wishes Essjay

 
Triple Negative Breast Cancer survivor since July 2018

Re: Mourning a future none of us is ever promised

Posted by WestCoastSailor on Jul 22, 2020 1:15 pm

lfilipe

What a story. Thank you for honoring use with it. I just finishing telling a bit of my story over here. Male Breast Cancer So I have kinda been wandering along the treatment road for awhile and would be happy to answer your questions.

But this has so many layers to it that I identify with. Dementia is triggered by so many things. Somewhere on the forum is a discussion of an Alziehemers patient with lung cancer. There were some pretty good tactics and strategies discussed there. What is clear is that mental illness complicates treatment tremendously. I always ask if you have had the hard conversations. Do you know what his wishes are around some of the difficult decisions that may have to be made? And these decisions can be complicated by different understanding within the family. Would it be helpful to point you to some resources around these questions?

And then there the caregiver questions that others have raised. Do you have a support system for yourself? I love the airline analogy. You need to put on your oxygen mask first before you can help others. In other words look after yourself. Eat well, sleep well, and make sure to get some exercise.

Looking forward to seeing where we can be of assistance.

Angus
My story: http://journey.anguspratt.ca

Re: Mourning a future none of us is ever promised

Posted by Cynthia Mac on Jul 24, 2020 9:57 am

Hi, Luis lfilipe‍ , I was caregiver for my Dad, also metastatic cancer (lung to liver). My Dad passed away last month, but it wasn’t his cancer — that we know of. He started to have periods of delirium, so I ended up walking a bit of that part of your journey, too. 

My dad had two courses of chemo therapy - the second one with immunotherapy - so if you want some reassurance there, I can provide it. 

Your story was thorough and heartfelt, and it sounds as though your Dad is younger than 70, whereas my Dad was in his late 70s when he had his first chemo. It is amazing that you care this much for your Dad. He is lucky to have you on his side through this.

Please come back and update us when you’re able, and know that we’re all here to help you get through this.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying