Transplantiversary

This past Wednesday, 9/25, marks my 2 year transplant anniversary. In a little over 2 weeks, I went from 34 trips around the sun to just 2 years old in my "new" old body. On one hand, this is a pretty monumental date (most transplant patients have died by now if they're going to or relapsed, and it looks like I have about a 90% chance of being here 3 more years from now, which seems fairly comparable to the general public to me) and while I'm profoundly grateful to still be kickin' it, this day and the time surrounding it are painful reminders of an anxious and hellish time and a reminder of what once was or was thought to be or hoped for. For you Brene Brown fans, here's my SFD that I just need to get out for now. Hopefully it feels better on the other side. 

One can post memes about "life isn't always what is expected, so go in your new direction graciously". I get that. And, in one way or another, I live that every day. Most people tell me that I'm a positive person and look what I've been able to overcome and blah, blah, blah. The truth is that I feel like a phony right now, and while there are some days, I can only appreciate what I have going for me, there are some days where I'm still angry and hurt and if I'm being honest, I feel wronged by the universe.  

When I look back one year ago, I see, today, a person who has achieved a substantial comeback. When I look at my life from pre-cancer times, I see everything that I've had to put on hold and the things that may never come to fruition, a life pictured that was never meant to be. I'm also scared to death to pursue some of the things I've always pictured doing for fear that it all might also be stripped away, yet I know that if I let this fear cripple me, I'll be extremely disappointed if I look back another 2 years from now and I haven't done anything. It's a weird and difficult spot to be in. 

My brain and body tell me to keep going as if nothing is happening because, really, it isn't. This week, for me, has been about putting one foot in front of the other and making it through the day hour by hour. Last week, I had a random overnight hospital stay because we had to err on the side of caution that I had an infection, which it turns out, I did not have. Monday, I had gotten a flu shot, and it appears that I had an immune response to it, so hopefully that means it'll work for me if I'm ever exposed to that strain. Waking up with a 103.7 fever though was a kick to the gut after not having any hospital stays for 6 months.

The worst part about the hospital stay were people questioning my life and what I do on a daily basis without consulting me or taking into consideration that in general, I'm just trying to live the best I can with the way I feel any particular day. When the first response to living my "normal life" is "what did you do to get sick?!" I'm not sure how it would make other people feel, but in my world, it just feels like a blame game. "What do you mean, what did I do? I was just doing normal, everyday activities that people take for granted." It feels insulting. I've had to put so many things on hold- am I supposed to keep living in this limbo so everyone else can feel their version of comfortable? If you have a 3rd chance at life, how is this even an acceptable expectation? 

One idea that I try to remind myself of when I'm feeling frustrated is that most of the frustration, shame, and guilt we feel are the assumed and implied expectations of others that we impose on ourselves. I'm not suggesting that I should start living my life by the "give no effs" rule because the truth is, that I do give effs. I just wish sometimes that the things I care about were seen, noticed, and respected by others. 

These are pretty intense feelings for me and if you're still with me in this post, I know things are going to be ok. Eventually, things work themselves out one way or another. I've been working through this grief and loss for a while now, but I feel a big struggle between the parts of leukemia and transplant that have (from my POV) put my life on hold versus meeting the expectations of others to simply make things more comfortable. Ain't nothing comfortable about facing your own mortality more days than not and ain't nothing comfortable about recognizing you realistically may or may not be able to do at the present time.

Most of the time, I feel like I'm making progress, but this isn't just something that's going to go away and it's not like I can just "get over it." I think that I'll never be completely over it, but the pain will lessen with time. 

This weekend, we're going to Jackson, WYO, to get away from the random, extreme, cold snap we're supposed to have and to just get the heck out of town for a couple of days. I haven't been there for about 3 years now, but I'm really hoping the animals will be out and moving in Grand Teton since the weather is starting to change. Hopefully this will be an opportunity to recharge and refocus on what's important to me to start again next week. 

So, end of rant, I suppose. I'll leave this with a couple of Brene Brown quotes (yeah, I find her books to be helpful so just entertain me for a few more lines)...

“I’m going to live in the arena. I’m going to be brave with my life. I’m going to show up. I’m going to take chances, and if you’re brave with your life, if you choose to live in the arena, you’re going to get your ass kicked. You’re going to fall, you’re going to fail, you’re going to know heartbreak. Today, I choose courage over comfort."

“If you are not in the arena getting your ass kicked too, I am not interested in, or open to, your feedback about my work. You can’t take criticism and feedback from people who aren’t being brave with their lives. It will crush you.”

Birthday Reflections

The last time I wrote in this blog was December 31, 2017. A lot of horrible things happened in 2018 and early 2019 that are still difficult to bring up, a lot of pain, scars and tears that I never want to experience again. There are days that I hate the body I feel trapped in and days where I find it amazing what my body is capable of. I've asked a lot of my body and it hasn't let me down yet. After 34 trips around the sun, I'm still here. While I wish I actually looked and felt like 34 instead of 65, there is definitely an appreciation for being allowed to be here another year. 

It's hard to believe that the last 4 years of my life have been dedicated to survival, and it's not that the present and future don't also require some of the same dedication, but with time, leukemia and my transplant are becoming more and more a part of my past while I work at creating and accepting a different future than what I previously envisioned. The good news is, that within reason, I can pretty much do everything that I used to do- my body just pays for it a little more the next day than it used to.    

A little summary of where I'm at health wise...

In 15 days, I'll be 2 years post transplant, still in remission. I still take meds to control graft vs. host disease, of which, the goal is for me to be off of all meds by summer 2020. After countless transfusions, I have a huge iron overload, so I go in for biweekly injections to boost my red blood cells and on the off weeks, I go for phlebotomies (basically like donating blood) until my ferritin level is at an acceptable number. This process will take approximately 1 year to complete. I'm still at high risk for infection, but I recently started the revaccination process. I'll have a checkup in Seattle in mid November, but I'm really hoping that the next checkup can be pushed back more than the every 6 months track that I'm currently on. 

We recently moved to Manhattan, just west of Bozeman, from our house in Lolo. While I think we'll ultimately like it here more than Lolo, it was definitely sad to move away from friends and familiarity. Manhattan is a town of around 1,700 people and the biggest event each year is the Potato Festival which interestingly enough had way more other foods besides potato based items sold at all of the food trucks- still a good time though. We also don't get standard mail delivery and have to use a PO Box unless something is delivered by UPS or FedEx. The best thing, I think, about the neighborhood though is that there's a playground next to our house, so Remi is loving life. And, unless it's cloudy, there has yet to be a bad sunset. 

So, goals for the upcoming months...get ripped AF and ski all winter long/learn to downhill ski, laugh and celebrate harder, do one thing for myself each week, schedule a tropical vacation, and begin the process to work again. 

Thank you to everyone for the birthday wishes. Over and out.