Cancer, Caregivers, Multiple Myeloma in your 30s

Seems Like All I Really Was Doing Was Waiting for You

When someone is diagnosed with cancer, the main focus tends to be directed towards that person, which is understandable. How am I feeling? How’s the new treatment? Do I need anything? Are steroids ruining my life yet? (Short answer – yes). It seems as though the people behind the scenes, the caregivers, tend to be overlooked or even forgotten. These are the people who make sure I function at life, get to my appointments when I need to and take care of the things I may have to slack on when I’m low on energy from receiving treatments.

My coworkers step in to cover my workload if I have to be out during treatments or appointments so my projects at work stay on track. My father has shuttled me back and forth to many doctor’s appointments both at home and in Atlanta. My mother steps in to help with our daughter when I can not do as much as I’d like. She has cooked and cleaned for us and makes sure I eat lunch if she’s at my house watching Olivia when I’m working from home. She is a real-life super woman. My brother, no questions asked, is willing to see if he’s a match to be a stem cell donor for me. He’s also the one who I can talk to in order to forget about what’s going on with me; he’s a good source of comic relief when I need it. My friends are my life source. I have a very special set of close girlfriends who have been there for me since high school, some even dating back to middle and elementary school. It’s rare to hold onto a group dynamic like we have, and I am thankful we’ve stayed so close all these years. I can’t imagine what it is like for my family or friends to watch me go through this, and it’s possibly harder for them to watch it than it is for me to actually live it.

I appreciate all the help I receive from the people in my life, but my husband is absolutely incredible. Of course I think I have the best husband on the planet, otherwise I wouldn’t have married him. I thought he was the best person I had ever met before D-Day. I’m not going to sit here as some women like to do and tell you my husband is better than yours; it’s all relative (I cringe when I see women post that shit on Facebook – shut the fuck up about how much better your significant other is than mine because he cooked you breakfast – #congratufuckinglations #yourhusbandisnotbetterthanmine). My needs are not the same as the person’s next to me. That’s awesome your spouse does things for you and I am not at all trying to take away from that; you should be doing things for each other and appreciating one another. There is balance in any successful relationship.  Both men and women should feel needed, appreciated and respected in a relationship. They’re such simple concepts, yet I see so many people struggle with them. Sure I can change out a light fixture myself if I have to, but it makes my husband feel like he’s needed and like he’s providing something to do it, so I let him do that sort of thing. My husband can bake  some incredible desserts, but I love getting in the kitchen and baking, so he lets me handle most of that. I don’t really care if this plays into stereotypical gender roles – it’s what makes us work and I won’t apologize for it.

John and I became friends as we were both coming out of long-term relationships that were not right for either of us. I won’t delve into the details of any of his past relationships – that’s not my place. I can speak for myself and say that I was coming out of a relationship in which I was not appreciated or respected, and it took me a long time to find my self-worth again after being emotionally beat down for about two and a half years. I am not free of blame for that failed relationship. I have a very strong personality and the two of us brought out the absolute worst in one another. I should have walked away long before I did, but luckily I was able to find someone who brings out all of my best traits after enduring such a disaster. John and I quickly bonded while venting about our failed relationships and realized we were looking for the same things in a partner. We learned a lot from our past mistakes about what we didn’t want and vowed not to be repeat offenders. After many months of resistance, we gave in to the fact that we were perfect for one another and started dating. Five and half years later we were married, and we’ve now been married for five and half years.

You don’t necessarily sign up for a flaming bag of shit like this when you get married. You promise to take care of one another, but you hope you never have to deal with something of this magnitude. John probably won’t like that I’m bragging about him. He doesn’t require a public display of gratitude, although he certainly deserves one. Not to say that my whole family doesn’t have to put up with this shit storm, but he sees me more often and at every point on the emotional spectrum, sometimes all in a matter of hours. He puts up with a lot from me, and he (understandably) gets frustrated at times. Frustration is allowed. Before I could be a bitch on a good day. Now I’m literally a bitch on steroids. He understands it’s meds that make me act crazier than usual and he’s good about not making me feel bad for my mood swings. It’s a challenge and we both know it will get better as my immunotherapy gets cut back over the next six months (steroids will be cut back as a result as well).

Not only does John have to deal with my lovely attitude, he also has to pick up slack when I’m unable to do stuff around the house that typically falls under my responsibility. We split up chores – he typically does the majority of the yard and straightens up, where I typically deep clean the inside of the house. We stick to our strong points and help out other places as we can. There I go again with that balance crap.

He takes on full “mom” duties with Olivia when I can’t. I know lines between gender roles are more blurred these days and fathers tend to be a lot more hands-on than they used to be. I can tell you if I go to lunch with Olivia by myself I may get an occasional comment about how cute she is, but no one really looks twice at a mother out to lunch with her daughter. When John takes her out by himself he is bombarded with attention from people telling him how adorable it is. People are still not used to seeing a dad do things like this with a three year old daughter. I told John he reached his high point when a gay guy recently complimented the way he dressed Olivia. There is no higher compliment; it’s all downhill from there. John could pick up mad ass at Chick-Fil-A on Mondays at lunch using Olivia as bait if he wanted to (good thing he doesn’t want to – imagine my steroid induced rage as a result).

There are moms out there who would have severe anxiety if they had to leave their kids under the watch of only their fathers for a few days. Luckily the thought of this doesn’t cause me any anxiety. I have heard of husbands who have not changed a single diaper, fed their child a single meal or helped put their child to bed. Ever.  Some women may not want the help; some women may like to have complete control over these tasks, and that’s fine. It’s all about what works for your personal dynamic, and I’m not here to judge either way. It becomes a problem, though, if you need or want the help and don’t get it.

John has Mondays off and had a lot of practice handling Olivia on his own when I went back to work after maternity leave (I did find him on the floor of her room in the fetal position upon returning home from work in the first couple of weeks – he’s come a long way since then). He then got a really large dose of Mr. Mom when I was first diagnosed and I couldn’t do anything. I wasn’t allowed to pick her up, change a diaper, cook, clean – nothing. My mother moved in to help us, but it was still a lot for him to handle on top of coping with the fact that his wife now had cancer. He also had to deal with me being emotional because I felt like a failure of a mother, not being able to do what a mother is supposed to be able to do for her child. Surviving was now my main job, and that’s what my daughter needed me to do. It took me a little while to realize that I’m not failing her as long as I keep striving for survival and improvement. She is the reason I fight as hard as I do.

John takes over without complaining and without asking for recognition or a special pat on the back. He does this because he loves Olivia and me. I try to make sure he understands how much I actually appreciate him, whether I’m showing him or telling him. Sometimes I have this feeling deep down that I’m falling short though. Maybe I feel like I’m falling short because our balance gets shifted towards him. Maybe it’s because I get so much of the attention, leaving him in the background to keep things afloat. It may seem like it sometimes, but it doesn’t go unnoticed and I couldn’t do any of this without him. He’s strong for me when I need him to be, he brings me back down and reminds me to breathe, and he steps in and takes over when I’m losing it. I appear strong to others because I have someone behind me fostering that behavior.

It’s not like we live in some fairytale and our relationship is free of issues. We have to talk through our problems like adults and determine how we need to overcome the obstacles thrown in our face. I feel like we are successful at being honest with and respectful of one another, although I really have to mind my tact when I’m jacked up on steroids. A little extra patience is required for me at this point. The best thing we can do is acknowledge any issues and devise a plan to work on them (like issue/risk mitigation in project management – we know I LOVE a plan).

Relationships without a strong foundation could be decimated by something like cancer. Not mine and John’s. I’ve known from the beginning we had a special kind of love, and I knew I wasn’t ever willing to let that go. The most memorable moment from our wedding for both of us wasn’t our first dance (we had a little fun with “Teenage Dream” by Katy Perry), but it was dancing to Regina Spektor’s version of “Real Love” by The Beatles. I was on a cleared out dance floor when the first notes came on and I looked up at John who was all the way across the tent having a conversation with someone. He immediately cut off the conversation and came running to me. We squeezed each other as we danced to the song and no one else existed in that moment but us. It’s a moment we will always remember, and I go back to it often.

I had already changed out of my wedding dress at this point, as it was pretty late in the evening and I had let loose a bit – you can probably tell from my disheveled hair. Eventually when I have the money to waste on a sizable tattoo, I’m planning to get watercolor orchids (flowers from the wedding) along with a verse or two from “Real Love” on my back. What John and I have is real,  messy, and imperfect, but it’s remarkable and I wouldn’t trade it for anything.

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