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. 

2017 was going to be my year. Was it? Will I not know it until years to come? Or, was it really not, and it actually brought on the suck and I'm just trying to rationalize it all? Can the suck of it all bring greatness? Was it really not that bad, and I'm just having a few bad weeks? Regardless, I've had a rough few years and while I keep putting one foot in front of the other, telling myself I have to stay strong and positive, I'm having a pretty hard time right now. 

I haven't posted much in the past couple of months because it's tiring. Unless it's to kill time, I'm not on social media that much because I see all of these complaints about things that I'd "love" to have- "problems" that people have that I'd take any day over taking 40+ pills, having a swollen face from being on high dose prednisone that isn't taking my skin GVHD away while it's eating away all of my leg muscles, making it difficult to walk up a flight of stairs, being able to see my kid grow up instead of being away for 4 months and seeing her for a few days every few weeks, having a glass of malbec with a medium rare steak or some sushi. I'd even love to be up for hours at night with a squishy baby and be utterly exhausted, but none of those are in the cards for me right now and some won't be or a long time, if ever. I'm not trying to minimize other's problems (they're all just as intense for us at the time as things I go through), but for once, I'd just like to have a normal day where the only thing I can bitch about is that my coffee wasn't made quite right or my hair isn't laying the way I want it to.

I was supposed to go home for Christmas because things were going so well, but the Tuesday before Christmas, I developed a fever and had to stay at UW Med Center until Friday while they figured out what was going on. I had some fluids and antibiotics and by the time I made it to the hospital, my fever was gone, but they needed to find the underlying problem. That Friday, I had a bronchoscopy that showed I had a spot in my left lung of aspergillus, which is a naturally occurring fungus that we're all exposed to, but people with normal immune systems can fight off. I've been on infusions of ambisome to get it to go away, but having this infection bought me another 2-3 weeks in Seattle. They'll do another chest CT on 1/9 to see how things have progressed and at that time, a plan will be developed to go home. I'm trying not to get my hopes up, but I'm thinking there's a possibility to be home the following weekend if the infection is gone or substantially decreased. 

I just really want to go home. I feel like I've been here so long and I need to get back to my house, my family, my friends, my (now) only dog. I need to be able to work out again, do some things I enjoy and just live for a while. I generally always have goals and set some expectations for the new year, but 2018 is blank to me. I still can't visualize what it's going to look like. Maybe I don't really need to. I just want to take each day in and hope for the best. Everything is going to be a work in progress for me and that's ok. In 2 weeks, it'll be 2 years since my diagnosis. It's been a long 2 years, full of some good times and hard times, a flood of memories comes back to me, although I live a lot of them everyday. Here's to hoping that 2018 is a little easier and slower for all of us. Eat the cake. Focus on health, not the number on the scale. Enjoy more experiences with the ones you love and tell people you love them. Just be and be present. 

Hump Day

Today is day 50 of the 100 day transplant process. Half way there. Half way to home. 

We celebrated tonight with crab/artichoke dip and moose stroganoff.

A special thanks to Robin, Linda, Elly, & Chelse for the laughs and good company. 

While the transplant process has been what I hope is the roughest thing my body will need to endure until I reach the oldest of old lady status, it has gone very well. I engrafted about a week and a half early for cord blood transplants- my red blood cells, platelets, and neutrophils are way above average for this stage in the game, and my care team is really happy with the results. I've had some skin graft versus host disease (GVHD) for a few weeks which really looks worse than what it is, covering everything but my face and bottom of hands and feet, but after some high dose prednisone and a clinical trial light therapy, it's really starting to go away. Although no GVHD is always preferred, the skin GVHD is probably the most ideal, as it shows that my cells should have a good graft vs. leukemia effect, meaning the new cells should know to kill off any potential mutation. Overall, I really can't complain, but if I had to, I'd just wish for new eyelashes to start growing in. Other than that, I'm just grateful and thankful to be here and have this opportunity at new life. A good end to the year and a fresh start for 2018. 

I've been fairly silent lately. Life is a little boring post transplant, although, I'd argue boring is the best post transplant. I've binged watched a lot of HBOGO (thanks Chris!), but I've also had a lot of time to think and reflect. 

While obviously different, I guess I sort of equate the past nearly 2 years of my life to military basic training- breaking everything down- physically, emotionally, mentally, spiritually- to the bones and building it back up. For all of the terrible, awful times, there has always been a silver lining. 

When you've been isolated in a hospital room, you realize the value of hearing people converse and laugh, the wind on your face, the feeling of being hot or cold, a non-hospital-cooked meal. There becomes a sadness, yet appreciation, in simple moments you realize you experience every day that no one is ever guaranteed. I finally feel like I wholly know who I am, and I don't feel like I have anything to prove. I have very simple needs and wants that really fill up my cup. It's refreshing, yet intimidating to be free. It's a lot of responsibility and exciting.

I am so incredibly grateful for all of the prayers, love, good vibes, support, good juju, etc. from so many of you out there. Going into the transplant, I had a solid few weeks of trying to take on the burden internally until I came to terms that I just can't do all of this stuff on my own. So, thank you, truly. 

In the next three weeks, my care team will be working on my post-transplant workup to get me home (fingers crossed for Christmas). It's going to be a long journey to complete recovery, but I'm feeling stronger everyday and that feels pretty damn good. 

Day 17 Post Transplant

Today is day 17 post transplant. While I think I've had an easier time than most people, it hasn't been easy. I'm finally starting to feel a little better today. 

The worst part about the transplant so far was losing my vision for about 5 days. It turns out that I'm allergic to compazine (an anti-nausea drug). We're talking, pretty much total loss of vision (people's faces looked like blobs and there was nothing to watch or look at without getting really depressed. Once the doctors found out what was going on, it took about 48 hours for the meds to wear off and I've had my vision back ever since. 

I had one pretty terrible day of mucousitis that required pain meds, but I upped my game on the saline rinses to where it felt like my tongue and throat were just swollen and sore for a few days. I'm still getting used to not having as much saliva, an effect from the radiation they say should go away with time. On top of all of that stuff, I caught a cold which is probably kicking my butt a little more than it would my healthy self. 

The effects of radiation keep popping up here and there. On my skin, pretty much any scar I ever had has reappeared to some likeness. My ears and lips are constantly peeling, and then there are elevated liver and kidney function results. Everything should subside, but it's amazing to me how powerful the radiation is. Sadly, not too long ago, the dosage was much higher while they were trying to figure out the right amounts. I guess I can deal with looking like my hot mess self when I get out of the hospital- I've got a good enough excuse, right?

I started showing signs of engraftment syndrome about a week ago (not the same as graft vs. host disease). Most of my body broke out into a rash that wasn't painful or itchy, but definitely added to my latest look which includes mostly no eyebrows or eyelashes too. I'm on prednisone which has helped the rash to go away. The good news to come out of the engraftment syndrome- ENGRAFTMENT. As of today, I have 380 neutrophils (1000 neutrophils is a low but functioning immune system). I can be discharged around 500 neutrophils, so there is talk that I could be discharged Monday or Tuesday. I'm taking all of my pills by mouth and self reliant for hydration now, so we just need those neutrophils to jump in a little more so I can get out of this joint.

This doesn't mean I get to go home home yet. I'll have to stay within 30 min of the clinic while all the kinks get worked out with my new immune system. It does mean fresh air though, company, and more space to visit when the Rembot comes out. Hopefully starting to feel a little more like myself again. 

This whole process has been just as hard as I imagined it would be. Most of the time, I try to sleep through it, pass the time as quickly as I can. I miss my family. I miss my life. Don't get me wrong, I'm still hopeful for the future, but I can tell this transplant has taken a toll on my body, and it's a little scary to not know when I might feel really good again. There are still plenty of days to go and rest and recuperate, but when I'll really find my stride again, I'm not for sure. 

I wanted to take some time and provide a little update. Trying to keep my eyes on the prize of discharge next week and preparing for Remi's birthday coming up in a couple weeks. Disney on Ice is conveniently in town that week, and I'm hoping it'll be as great for her as it was for me back in the days of girl scouts. 

Until next time....