2020

So this is the New Year

And I have no resolutions

For self-assigned penance

For problems with easy solutions

Death Cab for Cutie, “The New Year”

So I made it into another calendar year. Another countdown, another ball drop, another kiss with my husband at midnight. This year, I spent NYE day in the chemo chair ushering in systemic chemo #20. For he remainder of the evening, I laid on the couch or bed with my take-home chemo pump in a familiar swamp of general yuckiness and mild nausea. There was no partying. There was no clinking of champagne glasses. And yet I was still happy to just be here, with my family to ring in another year.

But first, let’s do a quick review of 2019:

This year by the numbers: Two major surgeries, one hospital stay for an infection caused by a rapidly growing tumor, several minor surgical procedures, many scans and 12 systemic chemotherapy sessions. I said goodbye my gall bladder, my colon, and both ovaries (they think, lol). I had my liver hacked at, the inner lining of my abdomen removed and chiselled away, and got a good chemo washout of my abdomen. I reluctantly said hello to early menopause at 41. Amazingly, I got to keep my hair.

Strapped in with no escape, I also continued to ride the emotional roller coaster that is stage 4 cancer. I went into a surgery that could have put me on a path to being one of the few who survive this thing only to have it cancelled after laparoscopy. I was sent home without surgery and hope, only to have a second lesser surgery that would buy me more time offered the next day (to occur a month later). I then discovered after that surgery, that they had missed that the mass on my ovary was a tumor which was now growing at a rapid pace. From that, I got a hospital stay, nephrostomy tubes (and later, stents), and a second surgery to remove what was now a 16.7 cm tumor in my abdomen.

So yeah, quite a year. But I am still here, and, especially since that tumor was removed, feeling pretty healthy.

The good news is that thanks to most of that I am actually beginning 2020 with less cancer in my body than I started 2019 with. At least I think so. I haven’t had any scans since I went off of chemo for this last surgery. Let’s hope that all of those little fuckers (mets) decided to stay in retreat mode and not grow or travel during the interim.

The bad news is that I still have some cancer in both my liver and peritoneum, and that I have already technically failed one line of chemo. Additionally, given my fairly dismal mutational profile, I have less chemo options going forward than a majority others might be in my same position.

Now it’s time for a confession. I expected to still be here today. I wasn’t as sure that I would still be as healthy, but I had added up options still available in my head and calculated that I would at least most likely make it to this point.

Where I go from here is less certain. I am holding my breath that since my current line of chemo was at least working on my liver mets prior to the break for surgery that it will continue to work. But the truth is my whole world could change as soon as my very next scan. The last time I came back from surgery, I failed chemo. Will that happen again? The thought literally keeps me up at night.

And so on to 2020…

Last year, in my post “365 days”, I posted a fairly large number of resolutions for what I thought might be the last full year of my life. In the end, I found that despite all of those resolutions, the most amazing thing that I did this year was to simply SURVIVE.

With that in mind, I’ve paired down last year’s longer list of specific goals into just a few broader ones that I’ve found to be most important:

1) Know what’s important to you. This is a pre-requisite to everything else. Sit down and map it out. What are your values? Who and/or what do you care about the most?

2) Be present with the people who matter.

Moments with my family and friends are pretty much everything to me now. I have gone full days this year where I haven’t even been able to accomplish getting dressed. But I sat with one or more of my kids and snuggled while they watched a TV show, or showed me the videos they made on their limited social media accounts, etc. They will remember the snuggles. They will remember you listening. They will remember those moments.

3) Pick your battles, and then fight like hell for the ones you pick.

I’ve reached this point where I realize that virtually none of my doctors are perfect, but if they are at least trying to find the right answers and respect my questions and research I am sticking with them. Because even just finding that is a rarity. A good doctor doesn’t get offended by a second opinion and is secure enough to consider other alternatives, if they are based upon expertise or research.

I firmly believe that some of the battles I did choose to fight this year (leading to both of my surgeries), either saved or extended my life by quite a bit. Note- this philosophy applies to all areas of life, not just medical. I am just using this as an example.

4) Be both critical and forgiving of yourself, and be open to improvement.

Know that you aren’t perfect. Be open to correction and be aware of your flaws. But don’t let that awareness consume you. Understand that they are also part of you, and in many cases baked in by past experience. The key questions that you need to ask yourself: 1) Who are these flaws hurting, if anyone? If they are hurting yourself or others, then ask, 2) Am I trying to make things better? If the answer to #2 is yes, give yourself a hug. Because in the end, it doesn’t matter what anybody else thinks about you, only how you feel about yourself. I know that I’ve pretty much stopped caring about other peoples’ opinions of me. But if you do something that makes you feel bad or yucky about your own actions? There’s probably a reason (Final note: this doesn’t factor in toxic personalities. Have you ever noticed that some people are never to blame?)

5) Don’t wait.

Don’t wait to live. Don’t wait to have fun. Go on the vacation. Go to the show. Bring your loved ones with you. Don’t wait to challenge yourself, or to do that thing you are afraid to do. Don’t wait to show your talents, or to do something that you are passionate about. Take the risk. Put your ego on the line. The people who would mock you if you failed don’t matter. Don’t wait to fix a problem that is making you or someone you care about miserable- no matter how tough it is. Battling the problem may take great courage and strength, but ask yourself- will it really be worse than not doing anything at all and letting that problem grow and fester, stealing you and/or someone you care about of happiness? Life is short. For some of us, it ends up being shorter than for others. Don’t wait.

6) Take care of yourself.

I’ve done away with long lists of “shoulds” and “shouldnts.” I’ve decided that I don’t want to spend my last months or years going to the extreme with diet and exercise. Go ahead- spend the day on the couch, have the cake, have the drink. Life is too short.

Just don’t let things get to extremes on the other end either. If you find that you never exercise, go for a walk. If you never eat vegetables, add in the ones that you can. If you smoke cigarettes, quit. Take care to not do things to your body that you know can seriously damage the health that you’ve been given in the long run.

7) Live your life with the ending in mind.

Whether it’s 50 years or 5 days from now, some day, you will die. The problem is that none of us think about death at all. What will our final plans be? What will it feel like? How will people remember me? What will my legacy be? This past year, I had to decide what I wanted my final services to look like. I had to decide what should be done with my remains. I had to make decisions on palliative care and end of life matters and communicate them to my husband.

All of these decisions weren’t for some abstract event to happen set to many years in the future, they were immediate and concrete. I’ve also had to think about what I will leave behind when I go. How does my story end? For most, I may be just a Facebook page or blog that no longer gets updated and eventually, expires. But how will others remember me, the ones that I am closer to? How will my kids remember me? Thinking about those questions is important, because the answers will decide how you choose to live your life.

So here I go into 2020. I hope to be back, reflecting, and perhaps writing something similar next year. But if for some reason I am not, or find myself too sick to be able to, I hope that they will stick. In the meantime, I am still strapped into the roller coaster, bound to face whatever the coming year has in store for me.

5 thoughts on “2020

  1. I saw your article on Yahoo and it brought me here tonight. Just letting you know that I”m thinking of you. The last couple of days have been a little rough for me and your writings helped me keep things in perspective. Your point of view is from a place that I’ve seen few people write from.

    Like

  2. The anonymity of the internet makes it so easy for people with personality disorders to attempt to bring other people down to their level of unhappiness. The smelly, nasty, trolls hiding in the dark under the bridge are no longer just fairy tale stories.This society promotes very little interpersonal contact, so the trolls continue to be fed well. These are sad and lonely times.

    Liked by 1 person

  3. Read your article on yahoo. (Fellow Ohioan ) .The article was very moving. It brought me to your blog. After reading everything you have gone through it made me pause and think about how I am approaching my life. You have a true gift for writing and your words will touch many. I know they did me. I will be revisiting your blog and hoping that the year brings you peace and health. Blessings.

    Liked by 1 person

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