This week, I've asked Keith to write my blog entry. I think many times caregivers are forgotten about, or come second to the patient's needs so I thought it would be beneficial for caregivers to have some thing to relate to. So take it away Keith...
About a week ago, Katie was reading me her latest blog (she likes someone else's input before she posts them), and she asked me to be a guest blogger. At first I was hesitant as I am more of a reader than a writer, but when she explained to me that she wanted me to write about being a caregiver and what it's like being the spouse of someone going through cancer treatment I thought it might be therapeutic for me, as well as give someone else an idea of what they might encounter when they are confronted with the challenge. In no way, shape or form is this any kind of comparison to what cancer patients go through, but more of an "other side of the coin" blog about getting through cancer treatment with a healthy relationship still intact.
So, here we go.
I thought I should start at the beginning with the day of diagnosis. I will forever feel guilty for not being at the appointment with Katie the day she got her biopsy results back and found out she had breast cancer. I work in a hockey arena for the local NHL team in refrigeration. Needless to say, the winter is a busy time for me. With only 3 other people in my department who can cover my shift it's hard to get days off during this time. Looking back now, I should have insisted I be with her, but to tell you the truth, I didn't think the outcome was going to be breast cancer. I mean, who gets breast cancer at 26, right? Getting that news over the phone, while at work, was torture. Thank goodness Katie's mom was with her. Maybe it was my way of subconsciously denying the outcome. Guess we will never know.
Katie had surgery to remove her right breast 17 days after her diagnosis. Her mother and father came down, as well as her brother and sister-in-law and my mom. The point at which we had to say goodbye to everyone and we went to pre-op (they let me stay with Katie as long as possible because she was so scared) was something I will never forget. There's a point when everything hits you, when you realize, 'Holy shit...this is it. We are actually doing this. This actually happened to us!' For me, this was it. The most helpless feeling in the world is when you have to put the life of someone you love in someone else's hands. I can see why some turn to prayer in these times. It's a feeling I never want to feel again.
The days between diagnosis and the start of treatment are a bit of a blur. We were carpet bombed with information in a very short amount of time. It's so difficult to make decisions when you have 3 or 4 different opinions, terms and vocabulary you're not familiar with, not to mention the shock you feel when you learn what's in store for you for the next who knows how long. Fertility was a major concern of ours. We have yet to have children and were both hoping to remedy that within the next 2 or 3 years (after I manned up and bought Katie a ring of course, but that's a completely different story). We met with a fertility specialist but came out of the meetings with more questions than answers. As for fertility after chemo treatment, and what to do to protect yourself during treatment there is definitely many varying opinions. After some long discussions and as much research of our own that we could find we decided against any treatments. Anything we could do would have delayed Katie's chemo therapy a minimum of 8 weeks and also involved pumping her full of hormones. Katie's cancer was hormone based so this just seemed like the exact opposite of what we were looking to accomplish with chemo therapy and post chemo treatment. As Katie says, no sense having a baby if she's not around to raise it.
Needles... oh how I hate you. Katie has a severe phobia of needles. This has caused as much anxiety in both our lives as any treatment Katie has had to date. She sweats, cries, bitches, bites and claws through almost every one. I'm not sure if I even need to say this but there are a hell of a lot of needles for the average cancer patient so this affected us enormously. For days before any blood work Katie would show signs of anxiety about the up coming appointment. At first, I thought she was being childish, but after I went with her to get a needle for the first time, I saw the absolute terror in her eyes. She managed to get almost every needle she was required to get, with the exception of a couple at the end of her treatment that the doctor said she could go without. Katie also had an expander put in after her mastectomy which required regular injections to "inflate" with saline on a weekly basis. It's a good thing that by the time surgery, chemo, and expander injections came around it was summer time, because I had a lot more time off available. On a side note, my work was amazing with this. I was able to go to every chemo session, every saline injection, and every doctor/oncologist appointment. They gave me the time off I needed to make sure Katie didn't go through anything without me again. I can't tell you what a relief it is to have this type of support behind you, I am very lucky.
Katie's first 3 treatments were called FEC (Fluorouracil (5FU), epirubicin and cyclophosphamide) and her last 3 were something called Taxotere. I told you there was a lot of vocabulary. I won't lie, I had to look it up. The first treatment went really well. She had since had a PICC line inserted in her arm. It's kind of like a permanent I.V. but not as intrusive. This helped because she could avoid having an I.V. put in every treatment which saved us both from 4 months without sleep. She was up and about after only a few days after treatment and I thought we over estimated the harshness of chemo therapy. Treatment 2 brought me back to reality, and treatment 3 even more so. The word helpless is the only one I can think of to describe my feelings during treatment. You sit there watching the person you love go through sleepless nights because she can't lay on her stomach or in any position except sitting up because of surgery, night sweats and hot flashes all day, vomiting and upset stomach for days on end, and mood swings like nobody's business. You catch yourself getting frustrated with them when you ask what they want to eat, they tell you, you make it, and they won't eat it by the time you're done because their stomach turned upside down while you were in the kitchen. You catch yourself getting short with them, but you don't realize you're doing it until they start crying because they think you're mad at them. The frustration is incredible and you will go through it no matter who you are. Mother Theresa herself couldn't go through this without showing some of it. These are the times I would come to appreciate the support we had through family and friends. They played a huge role in me keeping my sanity. Friends would come from out of town to stay with Katie while I got out of the house to shoot a round of Golf, or meet a buddy for a beer or 3. Just a couple hours out of the house to go grocery shopping was a treat. It consumes you, and if you don't take the time for yourself it will take over your life.
Katie's last 3 treatments were something called Taxotere. These treatments had slightly different side effects than the first 3. The nausea wasn't as prevalent through these treatments, but she experienced a lot 'bone pain'. As she explained it to me, it was as if she was experiencing the growing pains we all felt as a child where you're laying in bed at night and your legs wouldn't stop hurting, but this was through her whole body. There were times when she didn't sleep for what seemed to be days, and this of course greatly affected her mood. There were times when out of nowhere she would start crying, asking how, with all the advancements in medicine, cancer treatment could still be so rudimentary. How, through all the sacrifices of cancer patients before her, could we still be bombarding the whole body with chemical attacks like as if we were nuking her whole immune system to kill an in-grown toe nail?
Not having the answers to all her questions was equally as frustrating. As a man, you feel as if it's your job to take care of the loved ones in your family. When something is so out of your control, you just want to at least have a half decent idea of why this has to happen to them, but with cancer, there is no right answer. The hardest lesson I had to learn is to stop trying to have all the answers. Some times she just wanted someone to empathize with her. To hold her and cry with her when she felt like crying herself to sleep. Someone to be there, going through this awful time in her life every step of the way, some times full of hope, knowing there will be better days ahead, sometimes full of doubt, not knowing what the future will hold. If there's one thing you can take away from this blog, its that as a caregiver, this is your most important task.
What I can take away from this whole experience is this; I'm in love with the most inspiring, kind hearted, and bravest women I've ever met. I don't have all the answers. When you need help from friends or family, ask for it, and take the time for yourself. You're no good to anyone if you're completely stressed out. Cancer will try to take over both your lives. It's your job as a caregiver to keep reminding yourself, and your partner, that there is more to you than just being a cancer patient. Even though they can't control what they are having to go through, they can control how they go through it. Remind them that they are the same person they were before, only stronger. They may not be able to lead the life they once did, but the outside world will wait for them. That's a question that I do know the answer to.