Thursday, October 29, 2015

Chaos, part 1

Everywhere I seem to go, I cause utter chaos. The only place I go though, is hospitals. So I mostly just cause chaos there.

On Tuesday I had my first appointment with my doctor in Eugene. It seems like ages ago. We met him, he casually said he thought we could start treatment the next Monday, and I replied that I was actually supposed to start LAST Monday. Long story short, he runs out of the room, builds a program that makes it so other people can see what drugs I need, when, and then proceeds to order as many of my chemo drugs as he possibly can, does some improvisation, gets my blood tested, and had almost every nurse on the entire floor doing something in order to start my treatment that very day. Wednesday and Thursday I went back for regular chemo treatments, without too much chaos other than driving a total of 3 hours each day for an hour long chemo infusion.

Friday I had a lumbar puncture, which was supposed to happen at a different hospital, and after about 10 phone calls and much confusion I was told to just come to RiverBend in the main hospital. When they came to get me for the procedure I had heard nothing of any anti-anxiety meds, so I asked for them. Apparently some tough people don't need them? We spent the next 30 minutes with about 4 different people trying to get me in their system, in order to write me a prescription for the drug, to get the drug, and give it to me before I was rolled down 6 floors for my procedure. The procedure was much different than the other 3 times I've had lumbar punctures. Usually they are very quick, and I am either laying on my side or sitting, in my normal clothes. This time I had to lay flat on my stomach, and they used an x-ray machine to be sure that their needles were in the right places, and I had to wear the stupid "your butt is showing" hospital gown. Unfortunately that means the procedure took much longer than usual. Afterward I laid flat for an hour again in my fancy room, and then went over to the clinic to get my chemotherapy infusion for the day.

Saturday my clinic I usually go to is closed, but since we got a bit behind on my first day of chemo I had to make it up on Saturday in order to be on schedule. We met the nurses, got things rolling right away, with only a few hitches: They didn't have my med list, and they didn't have an order for me to receive IV nausea meds before my chemo (At this point I am super nauseas from 4 consecutive days of chemo, and I have an incredible headache from my lumbar puncture the day before, a common side effect). So we move into just getting the chemo, I figure the sooner we get it going to sooner I get to go home and not drive to Eugene again for 2 whole days. We have all sorts of issues, and can't figure out why the chemo isn't working- the pump is beeping constantly (awesome for my headache). After trying to fix the problem for an hour, we realize it's because my PICC line is clogged on the inside, and nothing can flow through it. Over the course of the next 2 hours I have 3 different nurses trying to fix it, giving me an IV, and redoing the chemo through my new poke. We were finally done 3 hours later, I was asleep by 7:00 that night and slept for 14 hours.

I forgot to mention, during all of this my right foot was reacting to one of my antibiotics and I had a tendonitis sort of situation, where I couldn't put any weight on my foot.

What. A. Week.

I started writing this post during that crazy week, and now the next one is already almost over as well! This week has not been quite as chaotic, and I'm 3/4 of the way through my treatments this week! However, that headache from my lumbar puncture on Friday? It's STILL with me. And I'm not talking just an annoying little headache, I'm talking can't function, shut up and turn off the lights headache. The good news is it usually goes away when I'm laying down, so I have been spending almost all of my spare time laying down. Unfortunately, there hasn't been a lot of spare time. Because I can't quite bare to start over again before the headache even goes away, I postponed my lumbar puncture that was supposed to be this Friday, and will continue them starting next Friday (a glorious 3 more, in a row!)

And I stopped taking the antibiotic that was causing the reaction, and my foot is almost all better!

So, I guess the chaos continues?

Sunday, October 18, 2015


I feel like through all of this my mindset has been something I have done a really great job of controlling, harnessing if you will. In the beginning it was very overwhelming (obviously). Something that I consciously did that I think was very helpful, was I made the decision to only allow what I could handle into my frame of mind. There was so much research to be done, and things to be processed, and thoughts to be had. But I sort of turned my brain down a notch, and only allowed a couple things in at once, to be processed, and then put away in my brain. I tried to keep my thoughts organized and well sorted, sort of like moving into a new house. I didn't unpack all the boxes at once. I opened a box, put the stuff away, and when I was ready, I got another box and did the same thing. I feel like I'm about halfway moved into this imaginary house, but I feel good about where my thoughts are going. I know this is a long haul, and I know that it will take a lot of willpower to stay positive and keep my thoughts harnessed and going in the right direction. The good news? I am surrounded by tons of positive people, with so much love and encouragement to give. So when I need it? I'll have that support, I know it. And for now? I'm doing my best to keep it all under control. Because that's just the way I work I guess.

Thursday, October 15, 2015


If having cancer has done anything, it has assured me that I am officially an adult. Which is sort of ironic because I'm being treated on a pediatric protocol, but that's not the point. I've always loved it when my mom volunteered to take care of things for me, and she still does. But when you're an adult, and your mom is making important phone calls for you, that's sort of weird. So today, no matter how much I hate making phone calls, I did it. All by myself. Like a grownup. And let me assure you, there is nothing in this world I hate more than making phone calls. Okay, maybe cancer, but phone calls are pretty close below that. So let me tell you all about my phone calls today.

First I had to call the insurance company to figure out if I was supposed to pay my giant bill from OHSU. I don't understand how insurance companies work, so I said a lot of really confusing things, and eventually the lady just decided she needed to explain to me how insurance works, and I thank her for that. You don't ever have to understand insurance until you're sick, then you need to understand it, and no one really takes the time to fully explain it to you. Turns out that giant bill from OHSU was just my co-pay, and if I wasn't insured I would have been paying hundreds of thousands of dollars instead. Once I was done talking to her, she transferred me to another person in the insurance world to fix a problem I thought I had, and I waited for 30 minutes on hold. While I was holding I got another phone call. Am I the only person, who when my phone tells me I've got a call waiting, I always hit the wrong button and hang up on both people? Because that's what I did.

The other phone call was from the nurse at OHSU responding to an email I had sent this morning about scheduling an appointment somewhere, because I need to have the dressing on my PICC line changed and I need to have a shot on or around Saturday, and I am supposed to be seeing a doctor in Eugene now, but getting in touch with them has been no easy task. So, I talked to her and she assured me that I needed to talk with Dr. Sharman or a nurse at his office to get things rolling immediately in Eugene because not only do I have those things that need to be done (PICC line and shot) but because I'm in remission (yes, you read that right, I'm in remission- there is no trace of the disease in my bone marrow) I need to start my next round of chemotherapy, the consolidation phase, yesterday. You read that right too, apparently I was supposed to start yesterday. So obviously, when I get off the phone with her, I'm not done with my phone calls.

My next phone call is to Dr. Sharman's office. The operator gives me the option of speaking to scheduling or a nurse, and I got really excited because a nurse might understand my situation a little better, so now I'm finally talking to a nurse at Dr. Sharman's office!! Yay! The second she answers the phone I get probably the worse anxiety I've ever had in my life. I'm trying to explain to her who I am, and what I have, and why I'm calling, and how important it is that I get an appointment in the next couple of days, and that my medical records are somewhere and that I'm on a very complicated protocol.... All while barely being able to form sentences, my voice is shaking like a leaf, I'm sweating and shaking, and I'm basically making no sense at all. She was so sweet, and I eventually made enough sense for her to figure out what to do next, except she had to look for my medical records and told me she would call me back later. Whew, phone call done, anxiety slowly dissipating and only one phone call left!

Last phone call, I'm cool as a cucumber, she finally gets all of my information in their system, she knows that I need to be seen soon, except... the doctors next available appointment is on the 22nd. Well that's not going to work! She moves some things around, and thinks she can get me in sometime on Monday, but is double checking with the doctor and will call me back tomorrow to let me know. And that's where we stand right now. Hopefully on Monday I will get my shot and my PICC line dressing changed, and I might start the consolidation phase of my chemo. That means I will get another lumbar puncture with intrathecal chemotheraphy, as well as the chemotherapy drugs cyclophosphamide and cytarabine IV (through my fancy PICC line). If I am starting the consolidation phase, that also means that I will be going to Eugene 4 days in a row, because I am supposed to get cytarabine 4 days in a row, which is really going to knock me down hard. So I guess I better take advantage of how good I feel right now (it's been a week since I've had any chemotherapy, and 2 weeks since I've had any chemotherapy that makes me feel like crap).

So, today, after spending far too much time on the phone, I am feeling like an adult. Thanks a lot, cancer.

Tuesday, October 13, 2015

Daily Routines

My life has always been very planned out, rather Type-A if you will. All my life it's been: go to school, come home, prepare for the next day, do it again. I've had my adventures, but it's always been very planned out and purposeful. I've never been someone who just called in sick for the day, or took a spontaneous vacation. I've always structured my time so that I knew what I needed to do each day, with to-do lists and tasks to be accomplished. THIS? This has really thrown a monkey-wrench in all of that. While I was at OHSU I had no other option, I wasn't allowed to leave or plan my day, I was stuck.

Now that I am at home, with all of these upcoming, but unscheduled appointments looming in the future? And bone marrow biopsy results that I don't know the outcomes to yet? And a possible remission, but also the possibility that that's not the case? And hearing things like "there will be times when you will be very sick" and "there will be times when you'll have to come in for transfusions based on your blood-work, but we don't know when that will be" and "there will be times when we will have to delay your treatment to allow your body to recover, but we don't know how much time that will take" and "after each phase of treatment there will be another bone marrow biopsy, and hopefully you will still be in remission" and "if you're unable to get into remission with chemotherapy, there is always bone marrow transplant or stem cell transplant options". Wow, that's a lot of freaking uncertainty in my life all of the sudden!

I expected my year to look like me teaching 6th grade science, waking up every morning and going to school with Max, coming home at the end of the day and talking about what we did and how things went, and preparing for the next day. I was hoping to enjoy our weekends being outside, going to the grocery store, going to concerts or on small vacations here and there. But now, things are a bit different. I stay home when he goes to work in the morning, because I'm not allowed to go in public places. That means that I can't set foot in a school for at least 8 months, because schools are like the germiest places ever. I can't really go to the grocery store, unless I wear a surgical mask and promise not to touch anything, so there's no point. And at this point? I'm in such bad shape from being in the hospital that I can't even walk down the street without being completely exhausted. So for the next 8+ months I'll be being driven to and from appointments in Eugene, and when I'm not doing that I will be either in my house or outside (that's where I'm most safe, because the air is clean, I just can't really touch plants or dirt, or anything). This whole change in daily routine is going to be really hard for me, I can tell. I am trying to stay on a normal sleep schedule, getting up around when Max goes to work and going to bed at a decent hour. I will be taking that Chemistry class through the University of Northern Colorado still, and while it's been really hard to get back into the swing of that, thankfully it is a go at your own pace sort of course, so I will do that when I can. And other than that, I am using this time to hone some housewife skills by keeping our house super clean. And I'm trying to get back in some sort of shape so I can eventually walk up a flight of stairs when I come across them.

Speaking of flights of stairs, I am currently half way through my biggest fitness endeavor since coming home. I am currently sitting on the dock on Woahink lake at Karen and Ty's house. It's incredible and beautiful and I'm so thankful to be down here enjoying the sunshine. But at some point I'm going to have to go back up those stairs. 

Pretty sure there's a metaphor in there somewhere. 

Saturday, October 10, 2015


I am an only child in a family of very healthy people, who do not go to the doctor and stay active and generally stay healthy by living healthy lives. Cancer isn't a thing in our family. Max had to call both my parents, and his parents, on September 9th and tell them that I had cancer. Seriously, I can't even imagine. For anyone involved. Obviously everyone was in shock, and devastated, and didn't know what to do. My mom sat by me in the ER wondering what to do but ready to do whatever needed to be done. Max's parents went into overdrive taking care of our lives for us. My dad stopped taking care of himself and I thought he was going to be joining me in the hospital, but then got it together and was there at my every beckoning call ready to help in anyway possible (and still is, since he lives right across the street from us). Max kept his cool and dealt with the logistics of everything while asking all the right questions. And everyone came to Portland that night, and sat around teary eyed, not knowing what to do next. With all of this happening around me, I had still not let much at all sink in, but boy did I feel the love and support. These people had my back from day one, and I know they're not going anywhere, and I know that they will all be doing a lot of driving in the near future to get me to all the appointments I will need to be at.

Then, as things became more clear and we knew we'd be in Portland for a while, along came more support. Friends far and near, new and old, pouring out their support. We had so many visitors right off the bat, that the nurses were seriously overwhelmed by us. I have some amazing friends, and we received so many amazing gifts, and cards, and good conversations. I want to personally thank everyone on here right now, but I actually feel bad because I KNOW I'll forget someone and that makes me sad. But I will mention a couple key players. Charnae Decker showed up right off the bat with an entire wardrobe of stylish and cozy hospital clothes for me to wear, which was absolutely incredible. Then she proceeded to set up a MealTrain for us all the way through December, which has been so incredibly helpful already (And another huge thank you to all the people who signed up to bring us meals, they've been AMAZING so far). Hope Sneddon spent the entire day with me, just talking about hospital life (which she is very familiar with) and gave me so many amazing words of wisdom and support, especially relating to the steroid Prednisone which we are both too familiar with. All of our other visitors were amazing too, and it was so nice that people could just show up and have a normal conversation with us, because after 22 days of only talking to nurses about health stuff, those normal conversations are really the ones you miss the most.

While Max and I have been together for almost a decade, this whole event went down just days after our first wedding anniversary. That's some heavy stuff! I can't imagine going through this without him, he has been absolutely incredible. My rock. So positive and supportive. Always advocating for me and asking questions that didn't even cross my mind. I couldn't have asked for anything more in a life partner and husband. And I know it hasn't been easy, but he's made this whole thing look like a walk in the park. He slept on a hospital bench for 22 nights, and spent the majority of every one of those days with me in a hospital room looking out at the beautiful Portland views, knowing if he left it was going to be without me by his side. Now that we're home, he is getting back to work and into a normal routine.

But, he also knows that he's my primary "caregiver" and there will be bad days when I need him here at home, and he will be the person that takes me to a lot of my appointments in Eugene or Portland, especially the big ones, and so his life is sort of on hold and at the whim of... me? Plus, he is out in the world getting exposed to germs and when he comes home he can't get me sick. So he uses gallons of hand sanitizer, and has to clean up all the dog poop in the yard now. He also does all of our errands, and grocery shopping. Since I'm no longer out and about, if people wonder how I'm doing, they automatically ask him. Please keep this in mind. Every person he comes across who is wondering about me, asks him. I am so thankful that so many people care, but please be aware that if you ask him how I'm feeling today, he's already probably told at least 5 other people. When I go to the grocery store, I like to get in and get out, avoid most conversations, and get my groceries. I can't imagine being in his shoes. And remember, he likes normal conversations too. So if you see my lovely husband grocery shopping for me, follow these guidelines: If you normally wouldn't have talked to him, don't. If you normally wouldn't have asked him how I was doing, don't. If you would normally talk to him about hunting and fishing and what he's been up to lately, please do! Normalcy is a good thing.

And now? All my amazing friends and family know that I can't really go out and about, so they come and hang out with me on the couch (when they're sure they're not sick) and we veg and talk about life, and I so appreciate it. So if you're a friend who wants to help, but doesn't know how, please don't hesitate to reach out because I love hanging out with chill people on my couch. Especially on days when I don't have appointments, and I feel good. Which are here and there, and unpredictable, but whatever.

Quick Update: Yesterday I had my last appointment at OHSU for a while, assuming that the results from my Lumbar Puncture and Bone Marrow Biopsy come back good. I will hear back mid-next week about whether the last 29 days of chemotherapy have been successful. If they've been successful, then I will be within 5% of remission, or in complete remission. If that's the case, then we move into the next phase of chemo and treatment with my new doctor at Riverbend.

Much Love! 

Thursday, October 8, 2015


This whole experience has really put a lot of things into perspective. There are so many moving pieces in life in general, and when you throw the C-word into the mix things get darn complicated!

We all take a lot for granted everyday, so I'm going to make a list of things that I used to take for granted, but from here on out will have a whole new appreciation for:

The feeling in my fingertips. 
My husband being the most amazing person to walk this earth. 
Fit muscles. 
Eating foods with "Live Cultures".
My mom being willing to drop everything for me, to do whatever I need or want. 
Having friends who care so much about my well-being. 
My immune system. 
Having health insurance. 
My dad living right across the street from me. 
Having a normal shaped face that isn't puffy from Prednisone.
Starting a family. 
Showering without a PICC line. 
Kind nurses.  
Living in a community that will stop in their tracks to help someone who needs it. 
Sleeping through the night without unexplained pain. 
Strangers who reach out. 
Doctors who know what they're doing. 
Marrying into the most supportive and loving family in the world. 
Having hair. 
Being able to go to the grocery store or other public places without a mask. 
Getting to be a teacher. 
Having energy. 
Being at home. 

Yesterday I started writing, and it was really hard. I had let my brain go to mush while I was in the hospital, I guess I had other things to worry about. It took me hours to get something down on paper, and I still couldn't figure out if I was making any sense. But then it got easier and easier as the day went on. And then I couldn't stop writing. It was the craziest thing! Now I have pages of thoughts written down, in all sorts of different stages of completion, that I will eventually post here on my blog. I figured I would outline how this whole experience has affected different parts of my life already in a couple different blog posts about some general topics that have really played big factors in this whole adventure already, and I'm sure as things go on my perspectives will continue to change and grow.

The crazy part is that once I started writing, my thoughts became more and more clear. And then I couldn't stop thinking! So I got a terrible nights sleep last night, because for the first time since my diagnosis, I was thinking of all the things I needed to do and could do to be productive. I was adding to my to-do list, I was writing down ideas of things to write about, and I was thinking about what papers needed to be filed and bills needed to be paid.

In a selfish way, I am sort of using this whole blogging thing to turn my brain back on, maybe it will make my grad school work easier or at least keep "chemo brain" at bay. And obviously this will be great for me to look back on once this adventure is in the rear view mirror. And maybe someone will read this who is going through a similar adventure and it will help them in someway. Regardless, I'm doing it.

Don't let me slack off, people!

Much love!

Wednesday, October 7, 2015

I have Leukemia and I have finally agreed to blog about it.

I have been resisting this whole blogging thing since my diagnosis for a couple reasons:

It makes it very real.
My fingers don't work very well from the Vinchristine Chemo, so typing is difficult.
I wanted this to stay my "teaching" blog, but I guess a "life" blog works too.
I haven't been able to focus on darn near anything because I let my brain get out of shape in the hospital.
And I was being defiant.

But now I'm ready to blog. I know it will be easier to keep people updated on everything and it's also a good way for me to share information with everyone at once, which is really a lot easier for me!

I was diagnosed with T-Cell Acute Lymphoblastic Leukemia on September 9th, 2015 (The first day of school). I spent 22 days at OHSU on the Bone Marrow Transplant and Hematology Malignancy floor, getting monitored around the clock. They finally let me go home, but told me that I will be getting chemotherapy, blood transfusions, and blood work done on an almost daily basis for the next 8+ months, and then will be getting maintenance chemotherapy in mostly the pill form for 2 years after that. We have been wondering how we're going to swing this while living in Florence, because word on the street was that the only hospital in the state that could deal with my condition is OHSU.

So here is todays exciting news:

A doctor in Eugene has agreed to take over my care!

This is huge for obvious reasons: That means that (almost) all of my appointments from here on out will be in Eugene and not Portland saving us so much time, money and energy. Except it's a little complex.

I'm only 1 of 12 patients in the state in my age group currently getting treatment for T-cell ALL. I am on a pediatric protocol, which essentially means that my cancer is being managed like it would in a child. Children have very resilient systems and so they not only have higher survival and cure rates for ALL but they can take a different sort of chemo regimen that older adults can't handle. Rather than knocking my system down with an intense dose of chemotherapy and then giving me time to recover over the course of a month like they do with older adults, I will be getting chemotherapy very regularly without time to recover. This means that my blood counts and immune system will be very repressed through the entire process, only allowing my system to recover slightly every month or two. There will be more toxins in my liver and kidneys than the norm and I am at a higher risk of any infections. This can put your regular oncology doctor way outside his comfort zone.

With this being said, the doctor I was assigned at OHSU is one of the only doctors in the region who has ever used the pediatric protocol for treating young adults with T-cell ALL.

The crazy part is that I am able to get treatment in Eugene only because my Portland doctor reached out to someone who he trusted to essentially hand a giant protocol manuscript to, and that doctor agreed to read it and do what the book says, asking any questions (or for help along the way) as they arise. I will still meet with the Portland doctor about once a month, but other than that, my new doctor is Dr. Jeff Sharman at Riverbend Pavillion. He agreed to step outside his comfort zone!

If you're feeling sciency and want to know more about my specific condition, my treatment protocol, and a ton of other crazy information (feel free to skim) I just found this publication that speaks very clearly about WHAT IS GOING ON.  It is not light reading.

Thanks for reading this, I will keep you all posted on here!

Much love and gratitude for all of your support and well wishes through all of this, it means the world!