Finding the strength: a caregiver’s perspective

I found out recently that strangers, specifically other people facing similar battles, have not only been reading this blog, but have found it helpful.

So, tonight, on the eve of another MRI, I thought that I would update the blog and also write a post highlighting the often unseen battle the caregiver goes through. I write this not to glorify myself or belittle my husbands battle, but to share the personal struggle that I encountered and the effective tools and outlets I utilized. My hope is that all the wives’, husbands’, significant others, parents and children of a cancer patient (survivor!!) can find something useful or at least familiar to them in this post.

Most importantly, you are not alone. At times, this was probably the worst thing I felt-loneliness. Living 3000 miles away from our family and friends (although we have since made some of our best friendships in CA), it is very easy to feel isolated and alone- an island surrounded with rough seas and fog. I felt the weight of the world on my shoulders. My mom told me the day we found out about the tumors “Sayer, this will be the greatest and hardest role you will have ever performed”. I was a theatre major in my undergrad. Mom advised me that in front of Chris, I would have to be the Spartan; stone faced, strong and positive. This was a very hard role to play considering the circumstances. People said to me, often, “how do you do it?” and my response was always the same- “what is the other option?”. I just did it, I was able to take my heart off my sleeve and evoke an extraordinary level of confidence and positivity when ever I was with or talking to Chris. However, there were times when I left the hospital so emotionally and physically exhausted all I could think about was a giant glass of red wine when I got home, but on those same nights, I found myself either falling asleep before my shoes were off or else feeling too guilty about drinking wine and relaxing at home while Chris was in the hospital room hooked up to a bag of chemo. You just do it, you cut your hair, you shave their head (before the chemo gets it) and you support them, because you know had the roles been reversed, they would do the same for you. It’s what you do when you love someone. And you surround yourself with people that you can lean on and be vulnerable too.

Guilt was another emotion I had to overcome. Anyone who knows Chris knows he is one hell of a lucky guy- escaping eminent danger far too many times. He is also someone who has been dealt far too many bad hands. Although, I am sure, even if he had had things “easier” previously, I would’ve still felt guilt. You will feel guilt too- over the glass of wine, the slice of pizza, the ease of crawling into your own bed, seeing your dog everyday. It’s natural and it’s understandable, but the guilt should not make you loathe those everyday pleasures. It sounds terrible, but I actually got through some of the guilt I was feeling through jealousy of others. I told myself not too feel and by allowing the self-pity party, occasionally, appropriately and within reason- I reminded myself that it wasn’t a cake walk for me either.

But by far, the worse feeling I felt, was helplessness, but that did not stop me from reading every piece of literature ever written on PCNSL and other related issues. I obsessed with articles, blogs, forums, message boards, etc, etc. If I could learn everything there was too know about this horrible disease, the treatment, the hospital, the doctors, the diet, the meds- then for sure I could be helpful in some way. But no matter how much I read, it didn’t get easier, in fact even just 3 years ago, the literature that was out there was very few and far between and extremely grim (one of the main reasons we started this blog). I couldn’t make the man in the bed next to him stop snoring, I couldn’t make the IV alarm stop beeping, I couldn’t make his skin stop bruising, or his face stop swelling, or his head stop hurting. I know now that my singing, my hand holding, my head rubbing, my snack giving and my hospital bed sharing cuddles got him through some of his darkest days- I couldn’t see that back then.

It is a hard role. It is a journey and you will get through it and you will be a better person for it and a better lover or parent, or son or friend because of it. And those terrible feelings will be replaced with inner strength, appreciation and gratitude.

A friend of ours gave Chris a card in the hospital that read “only in the storm can you see the art of the real sailor”, looking back now I know there was more than one sailor.

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5 Responses to Finding the strength: a caregiver’s perspective

  1. Karen Smyczek says:

    My dear Sayer, this was so well written, so honest and right from the heart. It’s ironic that you couldn’t see how strong and comforting you were to Chris during those terrible days, because we all could see it and all we did from this far away was marvel how Chris wouldn’t be here today if it weren’t for you and your loving care. Our biggest regret was that we couldn’t do more to help. You will always have a special place in our hearts and if we had searched the world over, we could never have found a better life partner for Chris.

  2. John A. Baird says:

    I am typing this too late at night. I am afraid that I won’t say anything that adds to your blog. I am amazed at all you and Chris have been thru together. I do reflect that your in-laws have had their own hill to climb. I’m certain you and Chris have been a model for Karen and Martin.
    Even if you don’t see/know “Him” ~I do~ and may “He” bless you ~real good.

  3. Jeremy says:

    Hi Sayer,

    Many thanks for this inspiring post. Maybe it’s cheap and narcissistic to say this, but I sometimes think of your struggles when I’m particularly irate about incredibly minor things. It’s motivating to know that others can rise to occasions that require real fortitude. Whether difficult circumstances find or make great people is a fun point of debate, but whatever the answer, my eternal gratitude for all that you’ve done for my brother and our family–you exemplify heroism to me.

  4. Margaret Mary Anderson says:

    Hello — I am one of the “strangers” that found your blog. Like you, I was a caregiver to my husband who battled PCNSL. He fought for almost three years. Sadly, he passed away on February 19, 2014. I also have read everything EVER written about this disease and, at times, felt like I knew more than some of the doctors. My advice is to keep reading, researching, questioning, and most importantly LIVING and LOVING! We lived each day as fully as possible. We filled every moment with love. We stayed optimistic and happy to be richly blessed with children, family, and friends who supported us every step of the way. There were so many positive things that came out of the experience. Stay focused on the present! I also kept a blog. If you’re interested, here’s the link:

    http://www.caringbridge.org/visit/josephanderson1/journal

    The journal reads from most recent to oldest (reverse chronological).

    The end of my husband’s life was beautiful and triumphant. I am slowly finding the peace that he now resides in.

    My best wishes to you and Chris.

    Margaret Mary Anderson

  5. Hi there–also another stranger who found your blog, and others. My dad has PCNSL. In a few days, it will be six months since our battle began–the exact same day that Mrs. Anderson’s husband passed was the day that my father fell in the snow, and was sent to the ER to rule out stroke. I thank you for sharing your story and my best to you as well.

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