As summer comes to an end and everyone is struggling to find their footing with online and distance learning, I find myself longing for days of the past. When the first day of school was celebrated with a supply and clothing shopping trip that resulted in adorable 1st day photos. When I didn’t have to strategically calculate how many times I want to go up and down the stairs of my own home because of the sheer effort it takes. When I could hug my friends and family freely and they would hug and hold me in return. When my bedside table wasn’t overrun with prescription pill bottles. When my kid didn’t hate and judge me for everything I did. When the world was a simpler, happier place.
But these days, everyone is a little extra miserable than usual. The stress between friends and families handling the pandemic differently is destroying relationships. The fear and consideration of losing loved ones over differing political and social climate standings is a daily struggle. As far as I can see, we are all a little more lonely than before.
And it’s no different on my end of town.
Since my last entry, of which the cancer had been knocked down for a while from my initial chemo treatment, the cancer returned shortly thereafter. That meant I had to go through another round of chemotherapy, go bald again, and go through the whole ordeal over the course of about another 5 months. The treatment, again, knocked my cancer down, but this time it killed off less than the time before. It was official that I’d never again be cancer-free, and it all became about slowing the cancer growth down.
I finished the six rounds of chemo just before summer started, and was immediately put back onto a chemo-pill for tumor maintenance. Thanks to Covid, my summer travel plans were effectively canceled, so I made the best of it that I could. I changed a couple of planned visits to camping trips in national forests, making it quite easy to avoid people for the most part. I took Emma to the Badlands and Yellowstone, went to Allegheny National Forest with BFF Jess, and made a couple of trips to Colorado and camped in the heart of the Rockies. It wasn’t always easy, but it was what I had available to not waste my days and still stay safe.
Now, after about four months since the second round of treatments, my tumor markers are still low but have been climbing each month for the past three months. Nothing is planned to change for my treatment quite yet, as they want to avoid putting me back on chemo for as long as they can to preserve my bone marrow for the rest of my fight. Honestly, sometimes the wait is the hardest part. Just waiting to see when the cancer will spread rapidly again, wondering how many treatments my body will be able to handle before the cancer wins.
Throughout the time since my initial diagnosis, I’ve lost a lot of relationships. There have been a lot of assumptions regarding my life; putting together little pieces of the puzzle that is my life and filling in the gaps with guesses and misinformation. I am judged daily for who I am, what I do with myself or my time, how I am handling this cancer, if I’m working too much or too little or not at all, if I’m overdramatizing, if I should or shouldn’t be taking this pill or that pill… My own daughter has barely talked to me in over a year, and there is literally nothing I can do right by her no matter how many things, directions or strategies I try. My three siblings have been essentially non-existent since my diagnosis. I’ve been accused of embezzling from the government. Thankfully, I have a handful of very understanding and caring people who still love me deeply and want to take advantage of the time left they have with me, and I don’t know where I’d be without them. It’s just the other losses are still very hard to handle.
Anyway, so it’s a waiting game right now- Just keep taking all the pills, make the most of the good days, survive the bad ones, and just wait until it’s time to start the chemotherapy again. The doctor assumes it’ll be within the next month or two, which is my guess as well. My question is, how many of these treatments do they expect my body can handle? How long before I’m stuck in bed, physically unable to live life and support myself? I don’t ever want to be that person. And I REALLY don’t want to be that person who has been sick for a while and eventually takes a turn for the worse, and that’s when people start come out of the woodwork to finally see me, make amends, or otherwise suddenly try to be there with me when we’ve all had this much heads up.
Maybe I’m selfish for wanting to be considered a little differently, maybe a little more than a typical day. Maybe I’m selfish for wanting understanding and benefit of the doubt. Clearly I’ll never be enough for some people, and I have to learn to be okay with that. People tell me not to take it personally that my teenager hates me. Show me one parent who doesn’t have a hard time being hated, and on top of it, cut their life so short that they may not see their child outgrow these teen years. …who wants to die with their child hating everything they do? And how does someone not take it personally?
Cancer sucks. It hurts in ways they never warn you about. I never imagined it would be so difficult to die. To try getting everything ready, to try not to have expectations, to feel so alone. Not wanting to share about the pain or the bad days because you can’t stand the sound of your own voice (or the sight of your own words) complaining anymore. I try counting my blessings and keeping them in mind, but when the most important things in your life are not on that list of blessings anymore, it is hard to not feel lonely, lost, and like you screwed it all up.
I just wanted to leave behind a happy memory of self. Have made a positive impact in the lives of those I love, and to leave this world behind a little better than I came into it. Who knows if any of that will happen. Maybe there will be a day that suddenly everything looks a little brighter, life will feel lighter, love will be in an abundance, and I’ll find peace in acceptance. Until then, I wish for everyone to find peace and happiness in those they love the most.