A Caregiver’s Journey Through Cancer

A Caregiver’s Journey Through Cancer

This is a journal entry from a dear friend of mine who gave her blessing to share her words as both a caregiver and a spouse to someone going through cancer treatment. The names have been changed to protect their privacy, but the hope is that her words will help those going through similar struggles, and will resonate with others that share similar stories.

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"My random observations after spending twenty-two days in the last almost three months (or sixty actual work days) being at the Angeles Clinic or at Cedars-Sinai Hospital:

What happens after being diagnosed with a new cancer is a bit like having water drip on your head slowly…after a while you’re almost used to it until you realize the spigot is all the way open and you’re drowning.

We’ve had cancer as the third entity in our marriage for 25 years, but often, it has been almost a silent party.

Now it’s out, it’s raw and uncovered and it’s overwhelming in how it took us in a giant leap into a seemingly bleak future.

The first few appointments were bewildering, and we asked questions here and there, relying unfortunately on the internet to fill in where we couldn’t understand.

For John, I can’t imagine where his mind goes daily or how he gets any relief from it all, ever. For me, I am the one in the waiting room, on my phone, reading a book, or silently observing those around me. 

In that vapid room, we are all the same person, whether we are the caregiver or the patient.

There’s never any cheerful chatter among people, or any loud noises of any kind.  We are quiet and kind and smile only when someone meets our gaze. No one ever really looks closely at another person, other than the one they came to the clinic or hospital with.

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When our name is called, we disappear behind an opaque door into one of the many (why are there so many?) patient examination/observation rooms, until the doctor comes to tell you the results of your latest scan and blood work.

Our favorite oncologist sees us every other time, opting often for his sidekick to see us, a brilliant nurse practitioner, who mimics him with short answers, positive reinforcement where she can, and concludes with expectations for us, and what they can deliver.

Despite how hard John tries, at this point in his treatments, there is not a lot of levity or bright moments in this part of the visit. Both Dr. H and Michelle hide any of their feelings as they should.

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The difference is that when John was doing well (in the old days), Dr. H was always asking about the best bourbons and best ice cream shops. Now, it’s all business.

Some days, they see twenty-five people...hard to even imagine, as this once small clinic (fifteen chairs in the waiting room to over a hundred and fifty now) has burst its new rooms and floors. How can they possibly deal with twenty-five people (plus families) every day?

How do they go home to a healthy normal home life and fit in easily?

As I sit for hours in these rooms, waiting for John, I am like the others there...it’s a bit of a Twilight Zone episode. I am usually antsy, not being able to do one thing for a very long time.

If it’s at Cedars, I have options…I can go to Mass every day at noon (lovely Chapel); for walking off the aches of sitting too long there are endless towers/buildings and Starbucks, and huge sitting areas with flowers and music.

In the North Tower, there is a grand piano, and several times, hospital workers or patients/caregivers will play, and it’s just beautiful…lifting you momentarily out of all that seems unreal once you hear the lovely notes spilling out.

Twice it has brought me to tears…which is strange, because I’ve had enough moments in this hospital to cry for “real”…leaving John to go for his brain surgery, watching him with the tube down his throat, fighting his hand constraints, etc.

But it’s the small acts of kindness or beauty that reach into my soul (do I still have one?) where I believe that he will make it, and so will I for another month, another year, another decade.  

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These small moments of kindness happen randomly – in the last few days, John has fallen twice and has needed help to rise from a low chair five times. Each time people have come forward, on their own, or if asked, jump up to help him…and even though my heart breaks watching him struggle, I am struck by how real humans are so different from the sick side of Facebook and all the rest of the Internet.

They render help easily, in the movie theater, at the nail salon, and at a restaurant…they do it, and move right back into what they were doing.

I don’t feel they even give it a second thought…and once again, my faith in humanity touches me and I know we all survive, in some way or another.

As a professional waiting room caretaker, I have overheard many conversations – and the disparity between them is often 180 degrees from each other. There are those that are yelling out to a family member to make sure they get soy milk in their latte, to two men holding each other for comfort. I relate to both. 

There are “perks” at the Clinic – each floor main station has a candy bowl filled with various candies. I am not a sweet person but when I go there, I am obsessed with finding the “best” candy – one time they had toffee bites.

There is a wonderful restaurant about a block away from the Clinic on Wilshire Boulevard, Lazy Daisy, where every item is health-conscious or vegetarian. We have been there enough that they begin preparing John’s green smoothie almost as soon as he comes in.

I have come to know these people (how would I have ever crossed their path or they mine?) in an intimate way that I almost don’t share with some friends or family.

Mary, Kate, Beth, and countless others who have embraced us (literally and figuratively) as we go about our weekly check-ins and infusions will be etched in our hearts forever.

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The Oncology Radiation waiting room at Cedars/Samuel Oschin Cancer Center is the hardest to observe…people in paper garments and turbins waiting their turn to go in for radiation…the people at the sign-in counter are welcoming to all, and we are so grateful for this small outward show of humanity that could transcend into any other retail environment (but often doesn’t) – it makes us feel as though we are at our local TJ Maxx, or Healthy Pet, or Rite Aid.

We are safe, for now. Even the parking lot attendants seem to know that they are dealing, literally, with persons facing death, and they honor that.

We are so fortunate to live close to a large city with options that are many; we observe patients arriving with suitcases on a weekly basis, yet we complain about our drive. Lately, I have become to sort of embrace that drive, as it bonds us with talk and small observations as we drive to another test, scan or consultation. 

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We are warriors, prepping for the fight with all that we are capable of – newfound love for each other, faith in God, and a resolve to keep each day going, as always, with a will to keep on going on.

Strangely enough, I have found purpose in my life at a time when I might have become pre-occupied with minutiae – silly unrelatable TV or the internet, irritating neighbors, or the incredibly sad local, domestic and international events. That “stuff” isn’t real to me every day, but living this battle is very real.

As I near the last decade plus of my life, I finally grasp what living your best life means to me and I am grateful that I have a purpose – that someone’s life was changed for the good because of knowing and loving me.

September 23, 2019"

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If you are going through a similar experience or know someone who is going through the same struggle with their loved one, please check out The Caregivers Guide to Understanding the Chronic Pain and Illness Experience and Why Some Stay Silent about their Medical Illness & Pain.

For additional resources, you may also be interested in Taking Care of You: Self-Care for Family Caregivers and Resources for Supporting Families Coping with Chronic Illness.

Daniela Paolone
 

Daniela Paolone LMFT is a Marriage and Family Therapist and founder of Westlake Village Counseling in Westlake Village, California. She helps those working through pain, illness, depression and anxiety either in the office or through online counseling which is done using a secure platform to ensure client confidentiality. Using education, helpful resources, unconditional support and understanding, she strives to help people transform their pain into power so that they can live their best lives!

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