Love and Cancer

Love and Cancer

            Ours was a love ripped straight from the pages of a romance novel. If you don’t believe in love at first sight then I am here to tell you it exists, albeit rare. I imagine most that venture down such an uncertain path may end in less than desirable circumstances. If it were like that for everyone every time I suppose it wouldn’t be so special and indeed this was something I had never encountered. Yes, this was something special and as terrifying and alien as it was I found myself committed from the first moment on.

I was on the road working when my life changed forever. My buddies and I had experienced a more awful than usual workday and went out to relax and maybe blow off a little steam. I had been nursing a jack and coke for nearly an hour lost in my own exhausted thoughts when I heard my friend say “and this is Jeff.” I turned around and looked down into her eyes. At that moment the world ceased to exist. There was only her. I knew that I was going to spend the rest of my life with this woman. I was powerless to do otherwise.

We spent every moment we could together while I was working in and around Cleveland where she lived. It was April and it was still very much winter there. I remember it like it was yesterday. When the time came to move on our parting was unbearable. I was home only a few days before we were headed back out to Michigan. It was her birthday and as a surprise to me, or maybe because I wouldn’t shut up about her, my buddies dropped me off and I skipped the Michigan trip and spent her birthday with her.

That weekend we drove all the way to North Carolina picked up my things and I moved to sunny Cleveland. Jumping in to a relationship as we did can be ill advised but her and I both knew this was something that would last. We were each other’s always and forever. We had a few hiccups here and there but there never arose an issue we weren’t able to compromise on.

For all intents and purposes we had the perfect relationship. We did for each other as any healthy couple should. She made more money than I did because I no longer worked for my friend’s company. I took whatever jobs I could find. We never fought over money, that’s something her and I adamantly refused to do.

After we had been together for two years I injured my leg bad enough that I walked with a limp for nearly three years. I was advised to stay off my leg for an extended period so we made a plan. I would attend college and work part time and she would work full time and go back to school part time when we had enough money saved. This made for long weeks and it cut into our alone time but it made the time we did have even more special.

In January of 2010 she was diagnosed with an extremely rare form of cancer. I do not mean to say that some other type of cancer would have somehow been better but at least they would have been able to provide a prognosis. We were both very grateful that the Taussig Cancer Institute at the Cleveland Clinic was so close but to hear the head of oncology at the number one ranked cancer institute in America tell us that he had never seen this before was a bit disheartening. Rhabdomyosarcoma is an extremely rare childhood cancer. My Susie was the first adult to ever be diagnosed and treated at the Taussig Institute for this disease. Yes the doctor had seen Rhabdomyosarcoma in children, but they had treatment options and could give an educated prognosis.

When it came to Susie everything was new. We were warned that the treatment for such an aggressive cancer would be devastating to her body. We were told that children can handle far harsher treatments but she was 33 at the time and the effects were far worse than we had imagined even with the doctor’s warnings. They were in no way overstating the truth.

Just after her diagnosis Susie instructed one of her brothers to tell me to leave. She told him “I don’t want to ruin his life with this.” The fact that I am writing this account should let you know I did not in fact leave. Her main concern through everything was always me.

I was saddened to find out from the chemo nurses that in many cases when a woman is diagnosed with cancer that the boyfriend will leave. I was only her boyfriend and not her husband simply because I was in college and I would have lost my grants if we had been married. I think that is what encouraged me to write this retelling.

When the cancer first surfaced it caused significant damage to the nerve cluster behind her right eye so she was forced to wear a patch. Susie was very independent, with the damage to her eye she was no longer able to drive and even if she had been able the treatments rendered her nearly immobile. Losing her independence was a terrible blow for her. I did all I could to make the transition go as smoothly as possible.

She was terribly intelligent and understood each and everything that the doctors said. In retrospect it may have been easier had she not been able to grasp the circumstances. It took a great deal of effort to get her to relinquish many of her day to day activities because my girl was stubborn and even in that state she tried to take care of me.

It was heartbreaking watching someone so active being confined to a bed nearly all day every day. I learned a few things over the next seventeen months some may find helpful so I type on.

The first and most important thing you need to remember when taking care of someone with a disease as severe as this is that no matter how hard it is for you it is far worse for them. The second thing is equally as important as the first. Love them. Let them know they are loved. Smile when it hurts. Be the same person you were before the illness took over. Their world as well as yours will be forever changed and flipped upside down but you as the caregiver must give a sense of stability. This peace of mind is as important as the surgeries, chemotherapies, and the radiation treatments. A positive attitude is paramount to recovery. If they see that you’ve given up then why should they keep fighting? You MUST be a trooper. If you need to fall apart do it out of sight.

When it hurts too bad to speak, laugh. When you’ve been awake for five days and can’t bear to think, be funny. There will be times they may get angry or excessively sensitive. Do not react, because you, their spouse, the love of their life, their partner, have now become their attendant, their nurse, their guardian, and their caregiver. This would be hard for anyone to accept so allow them to adjust in any way they see fit.

Be prepared. “Be prepared,” a very simple statement but prepared for what? The simple answer is anything and everything. Wal-Mart or CVS should definitely be one of your first stops. The aftermath of radiation and chemotherapy treatments can be very unpleasant and it is imperative that your home be disinfected on a daily basis due to the fact that chemotherapy decimates the immune system.

Here are a few things I recommend you have in your home: Non-scented disinfectant, (scented products can cause nausea) non-scented laundry detergent, hypoallergenic baby oil, Vaseline, examination gloves, surgical masks, a thermometer, a personal blood pressure cuff, lots of comfy pajamas, Ensure, (for when the nausea is bad) plenty of wash cloths and towels, extra pillows, extra blankets, ice packs, a heating pad or electric blanket, a box fan, an Edenpure heater, (these heaters cost a bit but they do not dry the air in the house and are safe enough to be placed close to your loved one without the risk of burns, they blow a steady stream of warm air) hand sanitizer. If you think you might need something, buy it. If you buy too much of something and end up not using it, donate it. It will not be a wasted purchase.

If you and your loved one have animals in the home it is perfectly safe to allow them to remain as long as there is no adverse reaction. Having her babies around did Susie a world of good. This however means that if you have dogs that potty outside they must be kept clean. I’m not assuming your pets are nasty but the hygiene regimen for your pups needs to be monitored on a daily basis. I washed our dogs twice a week during the warmer months; I was able to be a little more lax during the winter because there were no pesky allergens to piggy back in on their fur. Roxy couldn’t stand it but Frank always had a blast in the tub. I’d give him a bath and he’d give me a shower.

As Susie’s condition progressed we went through situations and circumstances no one should have to endure but the simple cruel, unjust, and heartless fact is, it happened. If you find yourself in this place as the caregiver to the person you hold most dear don’t succumb to the despair it offers. Grasp on to the hope and the love you feel and do whatever it takes for as long as it takes. In the end whether your husband or your wife survives or not you’ll always know that at the hardest point in their lives you were there and you did all that you could to get them through it with their dignity and their self-respect.

The night I met Susie was a karaoke night in that bar and I, a man with crippling stage fright, exhausted from working three weeks straight in the frozen tundra of Ohio, got up on that stage and sang my heart out to her. The last night I spent with her I sang her that song again, Feel Like Making Love, by Bad Company. I told her everything I wanted her to know and I like to believe she heard me. I played her all her favorite songs then I kissed her goodnight and I told her she didn’t have to fight anymore.

She left this world the next morning and I’ll never forget that day as long as I live. It was the brightest day I had ever seen in Ohio. The sun seemed bigger and brighter than on the hottest summer’s day but there was three feet of snow on the ground. Don’t feel sorry for me, it’s not why I wrote this. If anything be envious. I was blessed with five years with the most amazing woman I have ever met and she treated me like a king. I didn’t get to spend the rest of my life with her, as I had hoped, but I did spend the rest of her life with her and despite the pain and inevitable conclusion we were happy and we were still very much in love.

-JM Vogel

My Susie and me. Spring of 2006 We were both asleep on our feet in this picture, but her lifelong best friend invited us over and we didn’t want to disappoint… 🙂