The Christmas Post
Well by now I hope you know I was released from the hospital just in time for Christmas. My last post was Sunday morning, the 20th, and I was hoping to get to go home that day. The doctors were waiting for my methotrexate level to go down and my kidney function to go up. Apparently the poison damaged my kidneys by 50% and that’s why the methotrexate wasn’t leaving my system. I needed the methotrexate level to be at 0.10 or lower and by Saturday it was at 0.14 and I was so sure that by Sunday it would be low enough to get to go home, but my labs came back at 0.13 - it only went down 0.01 in a whole day. I was so disappointed and discouraged and angry. I called Eric right away to give him the news after he had been waiting around all day for the call to come pick me up. I could tell he was trying to stay strong and positive but I was just so pissed. I scream cried for a good half an hour causing quite a scene on the 6th floor of the hospital. I had a complete breakdown and I’m not proud at all at the way I acted, but after 10 days of being tied to a bed being pumped full of chemicals and missing my babies and just wanting someone to give me a fucking hug - I was just so done. The most the nurses could do to comfort me was give me a gentle pat on the back as I very loudly sobbed into my face mask. I’ve said it before, but I’ll say it again - unless you’ve gone through it, nobody will ever understand what it’s like to go through cancer treatment during this time of COVID with no visitors and a complete lack of human contact. I’m not a hugger by any means, I’m not a real touchy feely sort of person at all, but after 10 days in there, I just wanted someone to hug me. I’ll never be able to adequately explain the pain of isolation I’ve experienced this year. I’m jealous of the cancer patients who got to have someone with them during chemo or visitors during their hospital stays. I know I’m not going through this all by myself, but the trauma of being so alone during that last round will stay with me forever.
After the bad news on Sunday, I had no hope in getting out there the next day, and was still completely inconsolable the next morning when they came to take my blood. I got absolutely no sleep that night - I mean even worse than normal with getting urine samples every 4 hours and vitals taken every 6 hours. My mom, who also was thinking there was no way I’d be getting out, picked up my kids and came to the hospital to wave at me from the parking lot and pick up my Christmas Cards all addressed and ready to go to the post office. I was determined to get them out before Christmas if it killed me. She had come by a few times during my stay to drop things off for me, but had been unsuccessful in sweet-talking her way through security to see me. The nurses were kind enough to take my cards downstairs to hand off to her and it was at that moment that the on-call oncologist came in with the amazing news that my methotrexate level was finally down enough to go home. It had dropped to 0.09. I quickly texted my mom to tell her to stay in the parking lot and not to leave because I was finally getting out. After 11 of the hardest days of my life, I was getting to go home just 4 days before Christmas. It only took about 15 minutes for them to get my discharge order processed and wheel me downstairs - I think they were all glad to see me go too. I think I was upsetting the other patients with all my crying. My mom pulled her car around to the front and they waited by the door for me to get wheeled out. I was overwhelmed when I finally got to see my kids and hug them. We drove straight home so I could hug my husband too.
I spent the next few days trying to soak up all of the holiday cheer I could which mainly consisted of watching Christmas movies with my kids while laying on the couch. Eric did all of the shopping and gift wrapping while I was locked up so I was able to just rest as much as possible so that I could have some energy for Christmas.
Unfortunately I wasn’t completely out of the woods since my kidney function still hadn’t returned to normal, and I was told I would need to get blood drawn on Wednesday (the day before Christmas Eve). Sure enough, at 6pm Wednesday night I got a call from the oncologist who released me to let me know my kidney function had gotten worse since leaving the hospital 2 days before. That level needs to be over 60 and it had dropped to 57. He then asked if I wanted to come in to get some IV fluids to which I said, “No”. I don’t think he was prepared for me to say no, otherwise he may have phrased that question differently. I was not about to come in willingly just for something else to go wrong and then end up spending Christmas in there. No way. We then made a deal - I would pound water for the next 2 days and then go back in the day after Christmas (Saturday) and get my blood re-drawn. From that moment I started chugging and didn’t stop for 2 days. I’m not a big water drinker (see previous posts about my love of Diet Coke) but I made this my full time job. I tried to drink a bottle of water every hour - which also meant I was peeing more than I ever have before. I was going to do everything possible to avoid having to go back to the hospital.
Christmas Eve was very different this year. We always look forward to our tradition of going over to our cousins, The Gillette’s house, and it felt very weird to not go this year - but we’re all trying to stay safe and only see the family members who’ve been in our bubble. We stayed in and watched movies and made dinner and it was perfect. We also decorated cookies for Santa, of course. The next morning the kids got up at about 5am, too excited to sleep, and so our Christmas morning began before the sun rose. After opening presents at our house, we went to Eric’s parent’s house to open more presents and visit with them for a few hours. Next up was my Grandma’s house to see my parents and sisters. Spending time with my family means so much more this year for so many reasons and I know there may be judgement for even getting together, but oh well. I know I’m taking calculated risks, especially with a compromised immune system, but I’m not going to apologize for needing to be around family right now. It was a long day and my body was definitely hurting by the end, but my heart was full.
I went back to the hospital the next day, Saturday the 26th, for more labs - fully prepared for them to come back still showing my kidney function below normal and then having to get admitted to the hospital despite all of the water I’ve been forcing myself to drink, but lo and behold, it was up to 64. It looks like all that water did the trick to get me out of the dehydrated danger zone and get my kidneys working at full speed again. I’m sure glad that’s over - now back to Diet Coke. Just kidding - I’m still forcing myself to drink large amounts of water all day long. I need to keep my levels up to prepare my body for the next round.
Oh that’s right - I still have to go back to the hospital for more poison. So, I was originally scheduled to go back in tomorrow the 31st to start the next round, but the last round was so hard on me physically and mentally that I told my doctor that there’s just no way I’ll be ready to go back in just 10 days after getting released. He was not pleased. When I brought it up to him and told him that I wanted to delay the round, he said, “If you want to quit, you can quit”. I wasn’t saying I want to quit, but I think we can all see the last round did not go as planned. I was told it would take 3-5 days for the methotrexate to leave my system and for me to go home and it ended up taking 11 days - not to mention I was the sickest I’ve ever been in my life. I needed more time at home to rest and to hug my babies. I don’t think he really understood how hard that round was on me. He’s probably thinking he just saved my life and now I’m telling him what to do. I’m very grateful for him and I recognize that I owe him my life, but all I was asking for was for a few more days. He finally agreed and rescheduled my next round to start on Wednesday the 6th - 1 week from today. He then let me know that that round will be my last - my body reacted so badly from the last round that he’s afraid any more could do permanent damage to my kidneys. That’s just what I need - beat cancer and then end up on dialysis for the rest of my life. I’m really dreading the next round, but at least I know what to expect. I’ll be sick as a dog on the floor of the bathroom of my hospital room for at least 10 days (probably more). Maybe this time I’ll just demand that they keep a steady flow of dilaudid coming so I can sleep through the nausea. But at least this stay will be my last! It doesn’t seem real yet and I’m still waiting for the other shoe to drop before I start celebrating. I feel like I’ve had to deal with so many adverse reactions - with each round of chemo I’ve experienced new and more terrible side effects. Right now I’m dealing with extreme fatigue, body aches, watery eyes, weird dry skin, and constant chills. It’s the weirdest thing - I’ve always been someone who ran warm and now I can’t seem to get warm at all. I wear slippers and hats and my puffy jacket inside at all times - even though the thermostat is at 78. What happened to the hot flashes? We’ll have to wait and see if these side effects stick around for a while or if they go away after time.
And that concludes my last post of the worst year in history. Goodbye 2020 and don’t let the door hit you in the ass on the way out. I know everything won’t be magically better in 2021, but I need to hope it will be better than this year has been. I’ll be starting the year cancer free and, God willing, I’ll be ending it that way too.
