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.