I get knocked down, but I get up again.

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This week I had plans to make delicious meals like grilled buffalo chicken sandwiches, to go out with girls from work for dinner, tackle the mounting pile of laundry in my closet, practice yoga, and enjoy the hot weather that’s finally hit New England. Instead, I’ve been at the Brigham since Sunday night. Instead, I’ve been lying in a hospital bed almost continuously for 4 days. I spiked a fever on Sunday night after getting home from spending time with my dad and Bumpa for Father’s Day. Halfway through our attempt at watching Frozen, we were packed and on our way to the emergency room. After getting blood taken in both arms, a new IV put in, x rays, urine tests and a CT scan done, I was on my way to 4C, Room 56 (could’t even get into my resort 7D). Worst. Sunday night was scary. Really scary. I couldn’t stop the bad thoughts from racing through my head. What was wrong?  Am I not responding to the chemo correctly? Am I having some sort of allergic reaction to all the medicine I’m on? Could it be that the leukemia has come back?? Unfortunately, I still don’t have an “answer” as all the tests that have been run have come back negative. But this is actually a good thing as it means most likely this infection is due to my extremely low counts and my body being unable to fight off anything because of all the chemo.
(this is a pic from the ER on Sunday night. I thought twice about taking it, and thought three times about posting it. But it is what it is. And that’s what a chemo patient looks like in the ER with a fever. #nofun)
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My whole body ached, my head pounded, I couldn’t keep down any food or water and I could barely stay awake for more than an hour— I felt so physically and mentally exhausted these past four days. And then yesterday it all just sunk in and made me angry, made me grumpy. I had Mike hold a pillow so I could hit it as hard as I possibly could for about 5 minutes. I sobbed uncontrollably when the nurse was changing my IV line. Because it hurt? Yes, it hurt, but I cried because at that moment, as Coldplay of course was playing in the background (what’s wrong with me always listening to them when I’m sad), I just couldn’t take it, I just couldn’t take any of this anymore. I hit a wall. I don’t want people poking me and sticking me with things or ripping tape off of my extremely sensitive arms (a side effect of chemo is that your skin can become very sensitive to touch), I don’t want to feel like shit and be sleeping all day. I don’t want to be trapped inside while the sun is finally shining and the air is hot and inviting. I don’t want any of this, I kept thinking. I want my life back, as simple as that. It’s something I’ve said a lot on this blog, and something that has gone through my head probably 1000 times more. I just want my life back. So in between apologies from my nurse who thought she was borderline killing me from the sounds of my sobs, and Mike stroking my arm and saying everything’s going to be okay, I was able to pull myself together and stop the dramatics. Once she left, I beat the pillow. I had to. I had to physically get out how angry I felt. I’m obviously angry about this situation in general, but I felt angry about being here this week. I didn’t plan on this. This isn’t part of my “schedule.” Everything I had planned to do this week is pushed off now or cancelled. And that’s why this time feels so different.  This is another interruption of the already-interuppted life I’m living right now. And I hate the interruption. The other times I’ve come in (other than obviously the first time) I’ve been prepared and ready for it. This time I’m just sitting here feeling ripped off, feeling sick and feeling frustrated. I’m trying hard to stay positive, to continue to try to enjoy everything I possibly can. Like going boating this past weekend to celebrate one of my best friends 25th birthday. Days like that make me feel alive and make me feel so happy and so thankful that I’m able to still enjoy a day like that. Because those days are special and I know it. But it’s hard, it’s hard to always come back to those happy moments when you’re feeling beaten. As much as I try, sometimes thinking of bright days ahead just doesn’t do the trick in the moment. But then again, I got to feel that sun on Saturday. I got to laugh. I got to feel the ocean spritz on my face. I got to dance. I got to enjoy myself for a day. That’s more than some people can say.
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So as always, I feel a little better after this blog post. I needed to get out how kicked down I’m feeling. Because I’m not doing silly dances or arts and crafts this week. This week I’m struggling. This week I’m reminded that I’m in the thick of this horrible disease. I’m only 4 months into this long journey but I’ve still come a long way and I have a lot to be proud of and thankful for. There will be more rough weeks ahead, that’s for sure, but there will also be days like Saturday, on the boat with good friends and good food. That’s what will get me through.
Back to resting and getting rid of this fever.
XOXO,
Jessy

All You Need Is Love…and Friendship

I haven’t written a blog post in a week. I’ve started them, but haven’t been able to finish. I’ve wanted to write one but haven’t been able to find the right words for how I’ve been feeling. Because quite honestly, I’ve been feeling just about everything but inspirational. I still don’t know if I have the “right” words to say but I do know that it’s healthy for me to get out how I’m feeling and that’s what I shall do. Because my hope is that one day, I’ll read this back and it’ll be just a reminder of what I went through and how far I’ve come. And I gotta be honest, I can’t wait for that day. So March 26, 2016 (two years from remission)— get at me.
Last week, I received an email from Dr. Mandi (one of my two absolutely fabulous doctors). I had asked for some sort of outline of the next two years so I could get a better understanding of what was really ahead of me. So I got it, just like I had requested, and it scared the absolute hell out of me. Two years of treatment spelled out in front of me. Two years of a lot of procedures, appointments and chemotherapy. Two years of my life not being my normal life, not being the one I want to live. And being not even two months “in,” it pushed me over a cliff of anxiety, sadness and anger. This past week was hard… both physically and mentally. My body is achey. My head is still pounding from a spinal tap I got 10 days ago. I’m tired, really tired. But worse than the physical annoyances, I’ve been mentally struggling to stay above water. I felt so many emotions and none of them were positive. I felt sad, lonely, overwhelmed, confused, and honestly, pretty pissed off. Pissed off that so many important things in my life have been pushed back or paused. Pissed off that my whole life I’ve always tried to make healthy choices for myself and this still happened. Pissed off that things like taking a shower is a production. I found myself being jealous of complete strangers for reasons like they have long hair or are jogging or walking a dog. I was finding myself having to talk myself out of bed in the morning. And so when Dr. Mandi’s email came and I read, line by line, how intense the next two years will be, it scared me, because I felt like I can’t handle two years of weeks like this.
All in all, I was having a big pttty party for myself and I knew it. But I couldn’t snap myself out of it.
But then Thursday night came and for the first time in days, I went to bed with a big smile on my face. Not because I felt physically any different than the rest of the week, and not because I magically was feeling more positive. Thursday was different because it was the start of a weekend with three of my best friends… one who lives in Boston, one who lives in Chicago and one who lives in North Carolina. And the excitement of spending an entire weekend with my girlfriends was just the medicine I needed. Our time together was different than a typical girls weekend, consisting mostly of ‘lounging’ and relaxing but simply being together took my mind off of everything else and made me happy. So the power of friendship prevailed over anxiety, anger and sadness. Prevailed just when I needed it to. Just when I couldn’t pick myself up on my own. Friends and laughter and love picked me up and gave me something to look forward to and be thankful for and to simply enjoy. Because snuggling on the couch, watching trashy tv, eating candy and making each other giggle is one of the most enjoyable pastimes a girl could ever ask for.
Now my girlfriends have all gone home and it’ll be just me again this week but I feel different than I did on Thursday morning. I feel different because I’ve been reminded that these next two years won’t all be like last week. Some will be, yes. But there will also be a lot of days that are happy and fun and enjoyable. And those are the days that I’m going to think about and look forward to when I begin to put on my pitty party hat again.
So CHEERS to fabulous girlfriends!
XOXO,
Jessy
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p.s. this Sunday I’m thankful for 1. my girlfriends (duhhh), 2. Uncle Fred (my adorable stuffed bear), and 3. the weather finally starting to warm up (but lets face it, I could use another 20 degrees warmer).