5 Year Plans

There are several times in life where we set goals or at least like to have an idea of where our lives our going. Sometimes, we picture ourselves at a certain age having material things like a car or a home, or doing certain things, like getting married and having a family, or maybe even taking a break from so called "real life" and traveling the world. 

I have always been a planner. While I may not have achieved goals or done things in the timeline I once imagined, I usually have a plan for getting there eventually. Plus, I love to have things to look forward to, and planning helps me get to where I want to be and appreciate the milestones in between. 

Having AML puts me in a weird spot for "predicting my future" and doing all of the things I thought I'd ever do. I feel like we all like to have a sense of control in our lives, and while I believe that we each play a large role in accomplishing goals, tasks, etc., we ultimately are not in control of our lives. Don't get me wrong, I do believe in the power of will and attitude to get us where we want to be, but I think there is always going to be an element that we cannot control- let go and let God, I suppose, is a better way to look at it. 

One good thing (of surprisingly many) that has come out of this cancer is that it's forced me to appreciate the moment and the somewhat "mundane" or routine things in life. Life isn't always about looking forward to the weekend or the next big event or trip. We have all the other days in between and whether it's that you get to see the sun when it's been really cloudy out, or you get to make dinner for your family, or clean up a mess from where you and your kids or dogs have had a fun time, it's all worth soaking in and appreciating. I currently feel healthy and strong, but each day really is a gift to me, especially with having this disease. The sad part to me, is that each day has always been  gift that I haven't always appreciated. 

For once in my life, I feel like my goals are fairly simplified, although they mean more to me now than they have in the past. Taking one day at a time, this is my five year plan:

1. Love, live, and learn in the moment as a wife, mother, daughter, sister, and friend.
2. Survive leukemia and help to create greater awareness of and greater involvement with this form of cancer.
3. Be a mom. Teach Remi everything I can through our experiences together and more. 
4. Find my purpose and act on it when it comes. 

There are quite a few other things I could add to the list, but I'll keep those personal for now. I guess the main idea is just to live, soak in everything I can, and give back as I can, as well.

Toby and Remi fly into Seattle tonight, and I am very excited to see and hug them, and get in all the love. We don't have any set plans yet, but if today is any indicator of what the weekend will be (sun and 60 degrees in February?!), it should be pretty nice! 

(Remi Krutz: fashionista and wild woman)

Conjunctivitis

Who the heck gets pink eye over the age of like 10? Evidently, I do. I'd call it a small victory that I can open my right eye this evening after getting some antibiotic eye drops, and I'm hoping tomorrow it's even better. This morning when I woke up, I couldn't actually open it and had to Uber it to SCCA, incognito style with a hat and sunglasses. I'm pretty sure the driver thought I was hungover, and when I walked up to the pharmacy counter at SCCA, the guy told me "hope you have a better day." I was one hot mess! 

Other than the pink eye, things have been smooth sailing. I go in tomorrow for another blood draw to see if I need any blood or platelets. 

I have more to report, but this pink eye has me down a bit, mainly because the bright screen hurts my eyes and it was a beautiful day today in Seattle that I didn't get to enjoy. 

I hope to have more to share tomorrow.

With Sadness...

A close friend of mine lost her son this morning due to complications as a result of anencephaly. He was born on 2/17/16, and they were able to spend 3 days with him that I'm sure went by so very quickly, yet will be a lifetime of memories. 

I am completely heartbroken for her and her family. I knew that this news would be coming, but it's never the news you want to hear. I admire her courage and strength, as she has carried the knowledge of his condition with her for several months, and she will carry his passing with her for the rest of her life. 

I ask that you please keep her and her baby boy (and their whole family) in your thoughts and prayers, send love and light, etc. She is a very special person, strong woman, mother, daughter, and friend. 

Consolidation Chemo Round 1 is in the Books

It''s day 5 of 5 for my first round of consolidation chemo! It feels good to be here. I just got my last filgrastim injection for this round, so I'm officially on autopilot until the two chemo meds run over the next 4 hours. 

The next week is somewhat of a waiting game. From what the nurses tell me, the induction round of chemo that I went through in Missoula is generally the most difficult for people. If that's the case, I'm hoping that next week is smooth sailing with maybe just some mild flu-like symptoms, if that's what's going to happen. I have plenty of antibiotics, anti-fungals, anti-nausea, etc. meds to take, and otherwise, it's just go in for blood draws and transfusions, as necessary. Toby and Remi arrive Thursday night- let the countdown begin!

With the induction round, it took about 3 days after the chemo was finished for me to start feeling bad. I experienced a fair amount of pain due to a bacterial infection that caused colitis, but once the antibiotics were switched, things greatly improved. I'm hoping that doesn't happen this time, but we'll see. If it starts, at least I should be able to recognize the signs before it gets too bad.

Chemo completely wipes out all the good and (hopefully) all the bad cells in my blood stream, so the following week is much the same but also includes waiting for my counts to start coming back up to reflect those of a normal, healthy person. When that happens, I'm hoping to go back to Lolo for a week or two, get in some QT with my pack, and attend the Robert Earl Keen and Lyle Lovett show at the Wilma. 

A few of my friends and family out there know that I follow the Birth Without Fear Blog or they follow it themselves. A lot of the posts on the site are very inspirational and provide a great resource to learn to trust our bodies and love and accept them the way they are. I especially enjoy reading the section headlined "I am strong because." I feel like sometimes we need the opportunity to realize what our bodies and souls are capable of achieving and reading about what women have overcome in their daily lives is pretty amazing.

In the spirit of the week ahead and the challenges to come, I thought I'd do my own "I am strong because," and I encourage you to create one as well. 2016 hasn't been off to a great start for so many people that I know. We're all going through something. Let's give each other grace and remind each other of how strong we really are and can become. 

(Throwback to before the Krutzpack got its official start)

I am strong because at age 30, I was diagnosed with a disease that affects approximately 19,000 people in this country each year, mostly men, over the age of 65.

I am strong because although I have AML, I am an otherwise healthy person which hopefully gives me the best chance at responding to the medications and the best chance at long term survival.

I am strong because each time I've gone through a bone marrow biopsy, I've realized I needed the pain medications and the support of my husband to get me through it, and I've asked for and accepted that help. This is usually hard for me to do because I don't like pain meds, and I don't like to appear weak even when I am. 

I am strong because the day of my diagnosis, I also had a PICC line installed and began chemotherapy despite learning of the side of effects of the medications that could save my life. Not only can they cause the visual signs of hair loss, fatigue, weight loss, rashes, etc. but chemotherapy can take years off my life later and cause infertility, among other not so cool side effects. 

I am strong because I was able to breastfeed my babe for 14 months and 2 weeks until about 15 minutes before the chemo started, despite the anxiety of her being born 6 weeks prematurely, 19 days in the NICU, undergoing surgery to remove my gallbladder, selling our house and moving to Montana, starting new jobs and having new routines, among other things. Remi makes me stronger with how adaptable she has been and how well she has been able to handle these major changes. 

I am strong because I'm getting the best treatment possible with some of the best doctors in the country for AML in Seattle. Being away from my family is the hardest part of this whole thing for me, but I know it's the best thing to do so we can really enjoy the cool stuff down the road, like catching big fish, skipping rocks, getting mani/pedis, going to Sesame Street Live and Disney on Ice, baking cookies, seeing the most beautiful places, and learning all that life can teach us. 

I am strong because having leukemia has given me the opportunity to educate others and provide information that so many of us have never heard about or would have otherwise not learned about. I also hope that sharing some of the emotional side of cancer allows more people to understand what so many of their friends, family, and acquaintances have been through or are currently experiencing that so many of us, I believe, internalize because it makes us feel vulnerable and weak. 

I am strong because I have Toby, Remi, Pierre, and Jasper and many other people (and 4 legged friends) in my life the remind me everyday of what I'm fighting to hold on to. For this, I am so very grateful.

(Cheers to day 5 of 5!)

Bulldog Lovin'

I don't have a whole lot to report, other than it was a pretty good day. 52 degrees and sunny is pretty rare for this time of year in Seattle, so I took advantage of the late chemo start (4 pm today), and went and walked with our friend's dog, Arthur. It was nice to get some sun and some bulldog lovin' in. The power of pets or animals to brighten your day is pretty darn awesome. I'm definitely missing my Pierre Locke and Jasper Graintrain (shoutout to these hombres for holding down the fort while I'm gone and still loving me when I'm home), but some butt wags and hugs from Artie made my day today. 

4 days of chemo down in this round and 1 more tomorrow to go. Still feeling healthy and strong. 

Pack Tribute

Today is 2/17/16 which means that Toby and I have been married for 2.5 years and actually together now for 6 years. When I reflect over the past couple of years, I have several thoughts, lots of good memories, and of course, some "ok let's not do that again" memories. 

One memory I'd like to share about a very positive experience that changed my life then and very much applies to the current time and really, all the time we have spent together was when Toby and I attended the Engaged Encounter program a little over 3 years ago this month in Santa Barbara as part of the Catholic marriage preparation requirements. It was a beautiful location and set a great tone for the weekend to come. 

There were two couples and one priest that presented over various topics, sharing their personal stories and how although they experienced hardships, setbacks, etc., they were able to overcome those times with the help of their faith and God. One of the big things that I think Toby and I both really took away from it was the concept of unity in love. 

I feel like, as human beings, we all have times where we don't like the person we're with (you know, the idea of, "I love you, but I don't necessarily like you in this moment feeling) and other times where we're completely in love and life is rainbows and unicorns and Talenti sea salted caramel gelato.

One thing that has always stayed true in our relationship is that no matter what happens, Toby and I are unified and have an inseparable bond that allows us to come together and tackle the challenges at hand. For that, I am truly grateful. There is no one else I'd rather have by my side through the tough times and the good times. Cue sappy Eddie Vedder "Longing to Belong" ukulele song and happy tears. 

Throughout the past 2.5 years, our pack has been through quite a bit- we've moved from LA to Seattle and from Seattle to our Montana dream, switched jobs, and had the opportunity to love an amazing little girl and her hombres Pierre and Jasper, and here we are now, fighting to keep our pack stronger than ever. 

At the Engaged Encounter, we also attended church where the Hands Prayer was prayed over us. Just a heads up, the link takes you to a pretty cheesy looking PDF of a similar version of what we heard. I realize that many of you are not Catholic nor religious in any manner, but I feel like the words written are applicable in so many ways to all of us, so I hope you enjoy. 

I'll leave you today, just about 60% done with the first round of chemo (still feeling good), with some photos of my most favorite people who have my heart always. 

 (clearly her father's daughter)

(The hombres, Jasper and Pierre)

 

(Thank goodness for FaceTime. Remi 

giving me kisses on the iPad screen.)

You Can Save a Life Much Easier than You Might Think

Hola from day 2 at the SCCA infusion center! I got news today that my blood counts look great and things are progressing well. I'm still feeling good and haven't yet experienced any side effects. 

I've had quite a few people ask me if there's anything they can do to help, to please let them know. If you're reading this, there is something you can do. 

When I used to think of blood donation, I mainly thought about significant trauma or major car accidents. The truth is that countless numbers of cancer patients depend on blood and platelet donation for their survival every day (among several other people that need blood for so many other reasons). 

Since my diagnosis, I've received about 8 or 9 units of blood and 3 units of platelets to keep my hemoglobin above an 8 and platelets above 8,000 (these are the transfusion thresholds). By the time I'm finished with treatment, this number is surely to increase. My blood type is B-. Approximately 2% of the world has this blood type, so I feel an increased appreciation for all those who donate to help keep people like me alive. O- types are also universal donors that can be used for other blood types, but from what I understand, there is a somewhat increased risk of side effects during transfusion, so they prefer to use your type, if available. 

Does any of this sound like an episode of True Blood to you too? Oh, I'll have a B- today. Tomorrow, O- might taste better. When I'm getting transfused, I kind of feel a vampire vibe and it's crazy how much better I feel even 15 minutes into the transfusion. Ironically, this time last year when I was still on maternity leave, Remi and I were hanging out watching episodes of True Blood while navigating the newborn baby world, so that gives me some laughs. 

Back to the serious stuff... if you can donate a unit of blood, I highly encourage you to do so. So many people can and will benefit from your donation, and they will also be truly thankful for it. I've donated in the past and can say that it's a relatively painless process, much like having blood work drawn but with a heavier gauge needle. Plus they give you juice and cookies after and who doesn't want that? There are always blood drives going on, or you can schedule a donation at your local American Red Cross.

In addition to blood donation, there are opportunities to become a bone marrow or stem cell donor, especially if you're between the ages of 18 and 44. I'll never be able to register for this amazing opportunity, but so many of you out there can and if you can have the opportunity to be a match for someone and save their life, I can't imagine what a powerful experience that would be. 

Approximately 70% of the people needing bone marrow or stem cell transplants do not have a family match, so they rely on the donor registry for a match. I'm one of these people and there are thousands of others out there with leukemia and other cancers. If you are of African, Hispanic, Asian, or multiracial decent, your donation is even more crucial to the survival of others, as race and ethnicity play an important role in matching HLA types between patients and donors. You could be the match for a child or an adult who may face transplant as their only option at survival. 

Be the Match provides a wealth of information about the donor process, and if you have any specific questions that you cannot find an answer to, I would be more than happy to help you get the correct information. Just leave a comment below and I can help point you in the right direction. Imagine how amazing it would be to know you could save someone's life with something as simple as a few injections and a procedure as simple as plasma donation. 

Please let me know how I can help in this process, and I hope that you will truly consider providing the opportunity to survive and provide a second chance at life for potentially thousands of people just like me. 

Reflecting on the Past 2 Months

And so it begins, round 2. My day at SCCA started with blood work, followed by some IV fluids and anti nausea meds and another filgrastim shot (also known as a g-shot), and I'm about an hour away from being done with the first day of cladribine and cytarabine. I'm not sure if my pain tolerance has increased or if the nurses are just really good at giving the injections. I like to think it's a combination of both, so I'll go with that for now. 

An interesting thing that I found out is that about 1 year after receiving a transplant, I would have to be revaccinated for everything just like a small child, as antibodies that the donor would have built up to various diseases don't transfer with the transplant. Chickenpox at 30? No thank you! If and when I make it to the magical 5 year leukemia free mark (that's the point at which I have no greater chance of it coming back than the general public does of getting it), I plan to get a sleeve tattoo. In the past, I've always been a sissy for needles, so I feel like I might be a little more prepared by the time the tattoo comes around. 

With it being one month and one day since I was diagnosed with AML, I thought I'd share the story of how I began to realize I was sick. AML manifests as a typical "I don't really feel too good," general sickness. I first started to feel bad in mid-December but decided I was just "mom tired." All you moms out there know what I'm talking about- we're super tired, and each day, we somehow find the energy to just keep going. I strangely had a migraine on December 14th that hit me hard. I hadn't had one of those in years, but it was very intense and I think it may have been the day that the AML got it's start, but I'll never know for sure. A week later, Remi came home from school with the flu, which I also ended up getting, but 2 weeks later, I was still really weak and not really recovering. Still thinking I was mom tired, we went to Nebraska for Christmas, and I noticed that breathing was becoming a little more difficult walking up the stairs and I was even more tired than usual, so in my mind, I decided I needed to get into a doctor after the holidays.

It hit me on New Year's Day that something was seriously wrong with me. It had been so cold, but it was finally sunny and around 30 that day. I had really wanted to take Remi sledding or at least pull her around the yard in her sled, so that's what we did. I suited her up, and I was going to pull her around. Our whole yard in Lolo is a little under 6,000 sf, so that gives you an idea of the size of our backyard- big enough, but you can mow it in about 20 minutes and take care of the weed eating in about 10 minutes. I started to pull Remi in her sled and realized that my heart was pounding out of control and I couldn't breathe well. We didn't even make it one lap around the yard. It was at that moment that I knew I was sick with something significant. I told Remi, "Mama is sick, but we're going to find out what is going on, and we'll go sledding another time." It was a very emotional moment for me and one that I'll never forget.

I talked to Toby about my heart rate and fatigue and we both agreed that it was something I had to get checked out. I scheduled an appointment the first business day of the new year and being a new patient, I was told it wouldn't be until 1/18. I took the appointment hoping I could make it that long, but later in the week, my symptoms were getting worse, and I knew I had to get in sooner, and I was able to reschedule for 1/12. 

The weekend of the 9th and 10th, I could barely breathe, was exhausted, and couldn't even carry Remi from the middle of our house to her bedroom to change her diaper or even make the bed without needing to take a rest break. I couldn't even stay awake holding a conversation. Over the weekend, I had a dream that I was going to die if I didn't make it to the doctor's office.

Tuesday came around for my appointment and my brain was so foggy, I decided to call the office to see if my appointment was at 10 or 10:30. After some mixups with the scheduling, the receptionist informed me that my appointment wasn't until 1/19, so I called the other clinic location to see if they had any cancellations for the day. Luckily, they had one for 2 pm and it seemed like it took forever to get to the afternoon. 

I went into the doctor's office hoping to get some antibiotics and be on my way, although strangely in my mind, I wondered if I had Chronic Lymphocytic Leukemia (CLL) after researching my symptoms and cancers on the Mayo Clinic website. At my doctor's appointment, I found out that I had a hemoglobin of 3 and about a pint of blood in my system which was why my heart was working so hard to pump the blood I did have. I was admitted to the emergency room for a blood transfusion. The following day, I had my first bone marrow biopsy. On 1/14, I received my diagnosis, had a PICC Line installed, and began my first round of 7+3 chemo at 9 pm that night. It was a whirlwind of emotional and physical pain. 

I'm generally pretty in tune with my body, and although I knew there was something seriously wrong, I truly feel that God was (and still is) watching out for me and guiding me through this process. If untreated, acute myeloid leukemia will kill a person in approximately 5 weeks. I feel very blessed and lucky that I was able to get to the doctor when I did, as I potentially had 1 week to live. The dream I had could have come true, but it didn't. I apparently also set a record for many doctors with a hemoglobin of 3. The doctors in Missoula and Seattle have said the lowest they've seen is 5. I'm somewhat proud of the fact that I found a way to function (although barely functioning is probably a better term for it), but I'm also scared shitless by how possible it would have been for me to go to sleep and never wake up. I also feel empowered by the beginning of my journey because it taught me that my body is capable of way more than I ever thought it could withstand, and this helps gives me hope for survival. 

After my first day of chemo, I still feel strong and healthy. Here's to day 2, which starts tomorrow morning at 7:30 am. No time for a coffee and pastry with that early start! 

New Beginnings

A thousand emotions and thoughts ran through my mind the day I found out that I had leukemia. Some days, it still feels surreal. I don't remember any of the emotions being related to fear, anger, or really anything negative at all. While the doctor was talking about the diagnosis, all I could think about was figuring out a way to fix things so I could get back to my pack. This thought was and still is the most difficult part about battling this disease for me. 

I decided to start this blog for a couple of reasons: to keep family and friends updated with the treatment I'm undergoing and to provide an honest account of my experiences throughout this process, whether they be physical, emotional, or spiritual. 

The amount of support, thoughts, prayers, positive vibes, etc. has been amazing and overwhelming (in a good way), and I believe they have played a huge role in helping me achieve remission after the first round of chemotherapy and continue to help me stay on a positive path to beating the leukemia. 

Toby and Remi flew back to Missoula tonight, and I'll be staying in Seattle for the next 3 or so weeks undergoing my second round of chemo, known as consolidation therapy. It was hard to leave them at the airport, but knowing that the treatment I will receive in Seattle gives me the best shot at long term survival and being around for my family in the future keeps me going and makes me content with being a few hours away. It also helps that I have a huge support system here. Knowing I'm not alone makes a huge difference. 

Starting tomorrow, I'll be taking part in a clinical trial of chemotherapy known as G-CLAM. This is a 5 day outpatient treatment where I'll go to the Seattle Cancer Care Alliance Infusion Center each day for lab work and 5 hours of chemo. There may be some days when I'll also need a blood transfusion or platelets. I suspect those days will mainly come the week following the chemo, but we'll just take it one day at a time.

During the last week, I was able to put some weight back on and get some of my leg strength back, and tonight, I feel like my healthy, usual self. Here's to the week ahead and hoping my body continues to work hard.