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....

Ready and Prepared for Success

After weeks of feeling like I'm being pushed by armed guards towards a door I don't want to go through, feet sliding on the ground as I keep heading towards that space, I can finally say that I'm ready for this transplant. 

I've passed all of the tests and according to my doctors, I'm in an ideal condition to move forward with the transplant, and I should tolerate it fairly well. On Tuesday, I signed my life away and the cords were ordered from Europe, set to arrive tomorrow. I can't begin to explain how grateful I am for science and mothers who have had the opportunity to donate their umbilical cords and placentas. If you have this option available in your area, I urge you to consider donation. Umbilical cords and placentas are treated as medical waste and simply thrown away, when they have the potential so save someone's life. 

Dr. Fillipo Milano at Fred Hutch recently had a manuscript published in The New England Journal of Medicine that detailed a study comparing cord blood transplants, matched unrelated donor transplants (10/10 HLA match), and mismatched unrelated donor transplants (8 or 9/10 HLA match). The study found that at 4 years post-transplant, 71% of patients were still alive in the cord blood group, 63% of patients were still alive in the matched unrelated donor group, and 49% in the mismatched unrelated donor groups. 

If it weren't for science and research, I would find myself in the mismatched unrelated donor club. The 71% statistic is still a little intimidating, but 49%- I'm really glad that I'm not in that group. Minimum residual disease (MRD) was found to play a significant role in patient outcomes in Dr. Milano's study. After having my bone marrow and lumbar puncture a couple of weeks ago, I received results that I had no MRD and no evidence of NPM1 mutation on the smallest scale they can test, so this is really great news heading into the transplant. I couldn't ask for better results.

I would say that my short term concerns are going to be how my body handles the chemo and radiation. Ideally, I'll only experience side effects (fatigue, nausea, decreased appetite, mucositis (I'm especially hoping for little of this one), etc). The degree to which I may experience these side effects is mostly out of my control, but I've been trying to remind myself of a birth affirmism I used during pregnancy and labor which is "My Body is Strong and Capable." I also feel hope in that this may be the last chemo and radiation that I ever have to receive. It is very possible that I could live the rest of my life as a healthy human being, and that sounds really freaking awesome. 

There's been a slight change in my treatment schedule, which will hopefully work out in my favor. I'll be going through radiation first and chemo second, which they say may minimize side effects. I start the radiation as outpatient this Sunday. Radiation will be Sunday through Wednesday with a rest day on Thursday. Fludarabine (chemo) starts on Friday. On Saturday, i'll check into UW Med Center for the remainder of chemo (fludarabine and cyclophosphamide) and the transplant which is confirmed for 9/25. 

Until I go in for radiation, I'm on a food tour. First up tonight is Jak's Grill for my last medium-rare filet mignon (I'm so hoping they have the option that includes duck confit with truffle sauce on top) as long as I'm on immunosuppressants, which could be a year or more, but is guaranteed to be at least 6 months. Possibly tomorrow is Thai Tom before my stomach gets too sensitive and also attempting to eat my weight in Brie since unpasteurized, uncooked cheeses are not allowed either. Gotta get in the last bit of treats before the start of my 3rd opportunity at life. 

I hope to get in another blog post while I'm going through the conditioning and transplant, but if I don't, I'll see you all on the other side. Thank you to all of you for your prayers, love, support, good vibes, and really making me feel like I'm not alone, in the good times and when the going gets tough. 

In the Pre-testing Phase of the Transplant Process

After "getting my teeth kicked in" with the last round of chemo, I can finally say is wasn't for nothing. 

I had a bone marrow aspirate and lumbar puncture yesterday, and this afternoon, I found out that the initial flow cytometry results show no minimum residual disease in both the marrow and cerebral spinal fluid. We're still waiting to get the results back to see if any NPM1 mutations were detected, but so far, things are going fairly smoothly.

I had a chest CT a little over a week ago that revealed 4 small nodules of fungal pneumonia in my lungs, possibly stemming from my previous pneumonia during my last round of chemo in Missoula. Anyone out there ever taken Voriconazole? While the side effects aren't as noticeable after being on it a week, the first few days were quite the experience. I don't generally experience any side effects from medications, so this was something new to me. Either way, the goal is to keep those nodules the same size or smaller as I prepare for the transplant. This has pushed my transplant date to 9/25 from 9/22. I'll go into the hospital on 9/18 to get started with a week of chemo and radiation.

I feel like in the past couple of months, I've been in what I'll call a "conserving energy" mode. I have a lot of thoughts and emotions on my upcoming transplant, some of which I know how I feel, and others of which I choose not to think about because they're just things that are really hard. I guess it's a survival mode of sorts. I've been busy trying to build back up some strength and health, enjoy what consistent time I have left with my family, and prepare all of life's things for what is hopefully the biggest health event I'll need to endure. After I completed those things, plus making it to a ton of appointments over the past 3 weeks, I just don't have it in me to put down on paper any thoughts that I find significant or very personal. 

After treatment was over last July, I had a solid 11 months of feeling healthier than I had in years, and although I had times of doubt, I generally felt like the chemo was going to work for me-that I was going to be able to carry on with life as usual without further treatment. There were so many days that I didn't once think about AML, the chemo, and what I had gone through in the months prior. I was too occupied, living life again, and that felt really good.

I had a positive NPM1 mutation detection in March followed by a positive for minimum residual disease bone marrow in June, meaning relapse was occurring. While I knew going into the June bone marrow that there would be a high chance it was positive, I just didn't want it to be me. I had only just "come up for air" a few months ago and up high was where I wanted to stay. 

I guess what I'm saying is that I'm ready to come up for air again. I want to be healthy and live a long, fulfilling life, loving those around me. My last hospital stay took a lot out of me, and I anticipate that the chemo and radiation I'll be going into will do the same. I guess I need to take it one day at a time, remind myself that I'm stronger than I know, and keep my eyes towards the prize of going home in late December. 

Do any of you 2000 THN volleyball players still have your tie dye "Pain is weakness leaving the body" shirts? I think about that shirt sometimes. I thought it was cheesy then but sort of made us look tough and feel better about all the running we did. Well, after a year of all these needles, other sources of pain, and many more to come....I feel like either there was a lot of weakness in me, or maybe now I have strength that I never knew I could have...who knows. Maybe literally, the quote was just a bunch of crap. 

Anyways, I hope to post more frequent updates soon as I go into the hospital to keep people in the loop and to document the whole process. It's almost Friday and that means it's almost time to see the rest of the Krutzpack. 💜

Interesting Characters

Spending 8 hours a day in an infusion center really gives you the chance to meet a wide variety of people from quite diverse backgrounds. 

A couple of days ago, I met an interesting lady who reminded me of the actress, Kathy Bates, with her southern accent and short gray hair but with "rainbow bangs" as I'd like to call them, fading from blue to red to purple. 

Religion is often an uncomfortable subject for many people to discuss and many of us don't really talk openly to people about our beliefs but "Kathy" was ready to go as soon as I met her, with her first question to me of "Are you a Christian woman?" I responded with yes but got that little bit of side eye when I mentioned that I was Catholic 😜. She seconded her first question by then telling me that I was a young woman, capable of much strength and a better purpose later in my life and that was why the devil was trying to get to me now. That if I simply commanded to the devil to leave my body, God would rid my body of all disease and eventually, I would be cured. 

While I very much believe in a higher power, the power of prayer, saints, and loved ones who have passed being able to guide us through good and bad times, I've never considered leukemia to be "the devil working within me," and I'm still sort of thrown off by her comments. Not that they put any doubt in my mind, but it was pretty interesting to see a woman so sure of her ability to rid her own body of cancer by doing the very same thing she was telling me to do. 

I don't believe that everything happens for a reason. Some things we do, cause negative reactions in our lives, just as some things cause positive events. Other times, we might feel that we're in control and we're doing everything we can to keep our heads above water, maybe even waist above water, and things still don't go the way we had "planned." I think that there's no doubt that the power of prayer and meditation can help us achieve our goals, whether they happen on our own time or according to God's or your preferred higher being's power. 

I guess my main thoughts were "is meeting "Kathy" a twist of fate? Does she know something I don't? Maybe I should just do what she says because it couldn't hurt?" 

Anyways, it was a fairly weird, awkward experience, but I think it means something because 2 days later, I'm still thinking about it. 

Hope you're all having a great Thursday. Only one more day left of chemo after today- then onto periodic blood checks and attempting to stay as healthy as possible while waiting for my counts to recover. 

Back to Work

We've stuffed as much summer as possible into the past 2 weeks, knowing that once I start  chemo, I might not feel like doing much. We've fished the Big Hole twice, van lifed up to Canada and northwest Montana, played in the hippo pool, ridden the horseys on the carousel, hung out with friends, and probably some other things that I'm missing because we've been busy enough living life that I haven't had a chance to sit down and think about the "not-so-fun" stuff about life right now. 

I had my Hickman line placed right before going to Canada so I'd have some time to recover before getting treatment. The procedure wasn't nearly as bad as I thought it would be, and I have a suspicion that it would have been even easier had I not wrecked my bike 2 days before having the procedure completed. In my 31 years, I've never wrecked a bike like that, and despite how my injuries still look, I finally feel like I'm on the mend. 

Fast forward to today- back to work on regaining health. Today is the day that shit gets real. It's my first day back in the St. Pat's Infusion Center for the first day of G-CLAM. I'll be getting 4 drugs this time- filgrastim (growth factor shot), cytarabine, cladribine, and mitoxantrone. I'm a little nervous about the mitoxantrone because I've never had it before. Some people call it the "blue thunder" which sounds a little ominous. Others say that it's no big deal. I handled the chemo fairly well last year, so I'm hopeful that I can do it again. 

I haven't heard much from Seattle except that they are confirming the availability of the cords for the transplant. Once that happens, they'll provide an arrival date which they mentioned might by August 8 for pre-testing with a tentative transplant around Labor Day weekend. The nerd in me thinks it's sort of cool that my second birthday might actually occur near my actual birthday. Virgo 4 Lyfe 💪

You'll have to forgive me today for the rambling. My head feels like it's spinning a little bit with everything I need to do/take care of while continuing to enjoy what time I have left with my family and friends in MT. It sort of feels like I'm at the top of the first hill on a rollercoaster...the anticipation, the stomach drop, etc. It usually ends up being worth it when the ride is over, but at the top of that hill, you're not quite sure if it was a good decision to get on the ride to begin with, but there's no turning back now. 

I still feel good about everything, and I'm ready to do what I need to do. I just wish I didn't have to. 

Relapse.

Well, here we are again. You wouldn't know it by looking at me and I can't personally feel it, but the leukemia is back, all 0.006% blasts that decided to show up in my bone marrow aspirate last week. 

As medically defined, I'm still in remission, since relapse is technically 5% blasts or more. This is good going into the next phase of treatment because it means that although I'm relapsing, my immune system responded to the chemotherapy the first time. Many people don't even make it a year before relapsing, and if I was to keep going, it's possible I could make it to nearly 2 years in remission. Regardless, relapse is inevitable at this point, and I want to get on top of it before I become symptomatic.

In July, I'll be starting a round of chemo in Missoula to clear out the leukemia that's currently in my system, and in mid to late August I'll go to Seattle for conditioning chemo and total body radiation in preparation for a stem cell transplant. Once the transplant takes place, I'll have to stay in Seattle for 100 days while engraftment takes place and to manage any graft vs. host disease that might occur and/or infections. That's the biggest bummer of it all- being away from home for so long and missing out on cool stuff with my pack. If all works according to "plan", I should be home a few days before Christmas. 

After having a few days to process the results, I feel like I'm starting to accept the fact that my life is going to drastically change over the next few months and after the transplant is over, it's very possible that my life won't quite be the same again. I'm hoping for the best and somewhat preparing, while trying not to think about getting my butt kicked. I'm hopeful that the transplant will work, and I'll be given essentially a 3rd chance at life. The remainder of 2017 is going to be difficult emotionally and physically, but I guess we've been there before and if we can get through it once, I have no reason to believe that we can't a second time. 

Nearly one year has passed...

Finding a way to describe what it feels like to face the one year anniversary of my AML diagnosis is difficult. On one hand, this should be one of the greatest weeks of my life. Death was put right in front of my face, and somehow, I'm fortunate enough to say I'm still here, and quite possibly in better shape than I've been in since the last 10 years of my life. On the other hand, it's quite overwhelming knowing how I felt one year ago and how I spent the next 8 months going through treatment. It doesn't help that I recently found a GoPro video I had taken of Remi and the dogs one day before I went to the hospital where I noticed that I was so pale and visibly so sick that I really just wanted to delete it in an attempt to also erase the memories that came along with it. 

I've learned so many things about myself and those closest to me in the last year. I've been able to define more of what is truly important to me, who I want to be currently and how I want to grow as a person, learning how to appreciate the little moments, etc. However, I'm still in a spot where thinking too far ahead to the future is scary. Today, I feel so good- like, I can ski, do cardio, lift weights, chase around an active Rembot, and I'd have to say the one thing that truly weighs me down is the fact that it can all be taken away from me in an instant. Not that this is really any different from the general public, but once again, I'm hyperaware the things I hold close could be gone before I want them to be. So, here I am in this place where I'm constantly thinking...what if all these plans I have never come to be? Obviously, it's something I have to work past and I feel that it will ease over time, as more time in remission means less chance of AML returning, but the days I don't think about it are probably some of the better days I have- and for the record, most days aren't too bad, but this week, eh, it's not one of the better ones. 

Looking back, the past 3 years of my life have been filled some life changing events that some people never get to experience in a lifetime, let alone 3 years. Pregnancy, preterm labor, gallbladder removal, two job changes, two moves, cancer, remission. Although it hasn't necessarily started out the way I wanted it to, I've decided that 2017 is going to be my year- a year where I take back my life through adventuring, shakin' da butt with the Rembot, food, photos, etc. 

I recently read the book "Orange is Optimism" by Kit Whistler and J.R. Switchgrass, a book about idle theory living, van life, and seeking what they call "Sanity". While it wasn't quite the book I pictured in my mind after following their Instagram account (@idletheorybus) for so long, one paragraph stays with me which I hope to carry this year to absorb as much of life as I can:

"The most important thing you can do to heal your civilized wounds is go outside, because in the wild lands, you remember that we are not alone. In our sheltered lives, we've forgotten that we're prey as much as we're predator. We've lost a lot of dignity in doing so, because unless we are willing to lose something, we can never truly enjoy it. This is as true for love as it is for our own lives. We're meant to live with pounding hearts, unsure of what will happen from one deep breath to another. We were born wild and free, and should do everything in our power to protect that wilderness." 

Cheers to the year ahead and protecting the wilderness in our lives.