2015, You're Cut Off.

I'd like to inform you that I only blog when I'm feeling medium, usually. I don't blog when I'm feeling really bad because I can't focus and I'd probably just complain anyway. And I don't blog when I'm feeling really good because I'm taking advantage of feeling good and actually doing things or catching up on my life by doing things like cleaning, organizing, and paying bills. I haven't blogged in a while because for about a week I was feeling pretty bad and then I spent a week pretty fatigued but feeling decent, and this last week I've been feeling really good! The feeling good was perfectly timed, I've been busy as a bee! Although, thats all relative. In my normal life, I wouldn't have considered the last few weeks very busy, but for the new me it was busy. We had company from family, celebrated Christmas twice, had a few doctor appointments (although not as many as usual) and then this last week my best friend Jenna visited us from Atlanta!

Right now I am in between chemo phases and it isn't often that my body gets time to recover, but now is one of those times. When I finished the last phase around the 15th of December my ANC (Remember, that's the count of cells that fight off bad guys, my immune system essentially) was 60. It has to be 750 for me to start the next phase and right now I am at 480. My platelets (cells that help my blood clot) at that time were a very scary 6, which is worse than what they were when I got diagnosed. They have to be 75 for me to move on, but they're already back up to over 100- that means I'm allowed to shave my legs, but I'm probably still not allowed to do contact sports (That's funny, because I haven't even jogged in 4 months.) The plan, if my ANC cooperates, is to start phase 3: Interim Maintenance on Monday. We'll start off with a bang, with a new chemo drug called Methotrexate and my old friend Vincristine (the one that makes my finger tips numb) as well as a lumbar puncture over at the hospital. The following day I will get Pegasparagase which I'm getting used to but it makes us all a little anxious because it is relatively common that people have an allergic reaction to it. This overload of drugs within just a couple days is common during this phase of chemo, but thankfully I'll only be going in every 10 days other than to the Florence hospital for lab work and probably blood transfusions as needed.

As for 2015 as a whole, I've had better years. I think 2014 is my favorite so far (We started the year living in Alaska, moved home, got married, and I taught 5th grade at Mapleton, all while taking our health for granted.) 2015? It started off great, but then I got cut from my job at Mapleton. I got another job right away which turned out to be an amazing fit for me, but then, as we all know, I only got to teach for 2 days. Then everything changed.

I am ending 2015 with a new appreciation for life. I have gained perspective, empathy, and the ability to reach out for help and allow others to help me. I am finally taking that year off like I had always I would, it just looks a little different than I had hoped. I've spent more time on a couch this year than I ever have in my life. I've travelled to Eugene probably about as many times just this year than I had in all the previous years of my life. I haven't made the drive alone even once though, and because of that I have spent some amazing quality time with people who clearly love me because I know that it's not fun to spend your day in a chemotherapy treatment room. I've also had more people reach out to me and encourage me than I could have ever imagined. I've had old friends bring up amazing memories and new friends support me through the most difficult time of my life thus far. My family has never ceased to be there for me, and my grandparents have an open door policy halfway between Florence and Eugene for food and bathroom breaks. I've been gifted so many amazing things, and received so many delicious meals, from people who would do it any day of the week to people whom I never would have expected it from. I am so thankful for the people who have just spent time with me, because I can't imagine spending too much time alone with my thoughts on some days. All of these things have helped me to stay positive. A lot of people have commended my positivity, but honestly, my support system makes it easy. I know cancer is scary, and things could go south for me at any moment, but it's very rare that I even have time to think about that. My thoughts are filled with gratitude and I am always moving forward.

On to 2016. I doubt it will be my best year either, I think 2014 will be the winner for a while. 2016 will be a year where I spend the entire calendar year on chemotherapy drugs of all sorts. Things should slow down around May or June when I enter the maintenance phase (which will last for 2 years).

I only have one New Years resolution, and that is to do my best.

That's all I can do, and I know that things will get tough. Chemo wears a person down, and right now I am less than halfway through the tough stuff so I know there will be times where things will be very difficult: Staying positive, being nice, paying bills, being independent, the list goes on and on. But I promise to do my best. And I don't want to wish away the first half of 2016, because as hard as this all is, I know there are many things I'm gaining from it all, but in all honesty, I do wish that it was June already. I want my body back, my hair, my strength, my normal appetite, and my healthy life. Through it all though, I'll do my best.

Cheers to 2016 right now, because I know I'll be asleep before midnight.

Side Effects

Sorry I've been a bit MIA lately... It's been a bit crazy around here! I've had chemo in Eugene 4 days a week for the last two weeks, so I feel like I've spent most of my time on the road, going back and forth everyday! (We've put 3,500 miles on my car in the last 2 months)

It's actually been almost a month since I've written a blog post, so let me give you a quick rundown: I've had both good and bad days, unfortunately, the bad days seems to stand out in my mind a little better. As you know, I'm in remission, so nothing that has gone wrong actually has anything to do with the cancer, it's all side effects of the chemo and the antibiotics/antibacterials/antifungals that I'm on to protect my body because of my lack of an immune system from the chemo. And boy have I experienced what side effects are all about. The antibiotic that I was on reacted with the tendons in my feet, so I spent over a week unable to walk or put any weight at all on my feet. Max carried me or I crawled literally everywhere during that time.

I was so inactive during that time, that when I finally could walk again I was in such bad shape that my pulse would hang around 140 after just walking across the doctors office which was a bit concerning. I had an echo to make sure my heart was working like it's supposed to, and everything looks good, but my pulse was still way too high a week later so now I have yet another pill in the stash (the stash has 8 pills in the morning, 6 at night) to slow my heart down because the doctor said "my heart shouldn't think that it's on mile 20 of a marathon unless that's what I'm actually doing." And I'm not doing that any time soon. However, that new wonderful drug has lowered my blood pressure and now I get light headed if I get up too fast.

There have also been issues with headaches from lumbar punctures (I had 3 of them since I last wrote, and 2 of them went really well) and nausea because I guess you can't exactly expect to feel great after 9 chemo infusions in 11 days. The nausea medication is quite effective, however, it has side effects as well (I don't wanna talk about it). And then there was the night after I got a chemo drug that is a derivative of mustard gas that gave me some pretty serious other side effects that I also don't want to talk about, but long story short I spent about 36 hours awake and I am very thankful that it was the first day I could walk on my own.

That accounts for about 20 mediocre to bad days, but if I've done the math correctly, that leaves about a week of good days! I was able to go to the lighthouse one day, and to the beach another day. There have also been some days where I have been able to get outside and enjoy the good weather, and other days where I have allowed myself to lay on the couch all day (who knew that could be so nice?!) I also have an awesome bird feeder right outside my window, so I have been honing my bird identification skills. I know that many of you are not surprised by that even a little bit- birds are far more entertaining than anything on TV during daylight hours, midweek. "A Guide to Field Identification: Birds of North America" has a permanent home on my coffee table.

Sorry that this post is 3/4 negative so far. I'm trying to be real with y'all. 

This Thursday was my last day of having chemo 4 days a week until the spring, which is very exciting. For the remainder of this phase I just have chemo once a week, and I will be finished with it the week before Christmas. Then we have to wait for my platelet and neutrophil counts to raise back up to a some-what normal level, which will hopefully take a little longer than a week so that I can have Christmas off (my own selfish wishes, because fortunately my body has been recovering very quickly, which is great, but that just means I get more chemo closer together). After Christmas I will start the 3rd (of 5) phase. It will be a different combination of chemo drugs, some of which I have already had and some that I haven't. I will also have (only) 2 lumbar punctures during that phase, and another bone marrow biopsy at the very end to reassess my remission. Each phase is 8 weeks, so that will probably happen in late February if all goes according to plan.

I'll be better about keeping the blog updated, I promise!

Chaos, part 2

I wasn't planning on writing ANOTHER post about chaos, but alas I must, because yesterday happened.

Yesterday Max and I drove to Eugene at 7:30, for my 9:30 check in time, and 10:30 lumbar puncture appointment. When I got there, I assumed they would need to do blood work, because all of my counts are very low from the chemotherapy. I got a platelet transfusion the day before yesterday, so that they would be high enough for the lumbar puncture to happen. I got my blood drawn, and was told that the people performing the procedure were ready for me as soon as my blood work came back. When we got my blood work back (1 hour after procedure time) I was told that my platelets were too low, they were 39 and needed to be 50 to do the procedure, so I would need to have another platelet transfusion before they could do it. My doctor doesn't work on Fridays, but they had to get the "OK" to do it, so they contacted another oncologist at my clinic. He said I was fine to have the procedure, because they couldn't give more platelets unless I was below 20. However, the doctor doing the procedure still wasn't cool with that. So apparently I'm in limbo if my platelet count is between 20 and 50, and nothing can be done (or it was just a disagreement between doctors, we'll never know...) Unfortunately, it took us 5 hours to come to any sort of conclusion, before we gave up so that I could get my chemotherapy infusion over at the clinic before they closed.

Getting chemotherapy is usually very straight forward, however, on Tuesday when I went in to receive my lovely Vinchristine (the one that makes my fingers numb) and PEG-Asparaginase (A high likelihood of allergic reaction) I was only able to get the Vinchristine because a delivery had been delayed and PEG is an uncommon chemo drug so they weren't able to get it from anyone else in town, so it was rescheduled for yesterday. There weren't any nausea drugs prescribed to go with this chemo drug, and they also didn't have any orders to give Benadryl with it in case of an allergic reaction, so I was thankful to have done my research beforehand so that I could speak up and get all of that done. This did slow the process though, and with those extra orders to the pharmacy, plus a 1 hour infusion, and then 1 hour of observation afterward to be sure that I wasn't going to react, we were able to leave the clinic by 6:15, over an hour after they had closed.

So, long story short, we spent 12 hours yesterday and I only ended up getting 1 chemo drug. I now have to reschedule my Lumbar Puncture, the problem is that they are supposed to be 7 days apart, and my next 2 are scheduled for the next 2 Fridays, and I'm already a week behind schedule because we delayed because I still had the headache last Friday.

I've got 3 potential appointments next week, but I don't know times or any details until I hear from the doctor on Monday morning. The waiting game continues.

I just love these Emily McDowell Empathy Cards... 

The good news:

• I feel pretty darn good. My headache from the last lumbar puncture finally went away. 
• The doctor told me on Tuesday that he wouldn't be surprised if I spiked a neutropenic fever this week because my ANC (absolute neutrophil count) is only 20 (normal range is anywhere from 1,600-8,300), and the longer a person is neutropenic the greater risk of infection (I have been for almost my entire treatment) and I DIDN'T!
• I have been given permission to get blood work and transfusions done here at the hospital in Florence, so that means much less driving! 
• I'm almost out of hair to shed all over everything, but that means that I might cave here soon and completely shave my remaining hairs. 

In other good news, I have my moments of being scared out of my mind, and thinking "THIS ISN'T FAIR", and avoiding thinking about the future beyond all of this chaos (I see a blog post about all of that in the near future)... but mostly, my head is in a good place, and I am so appreciative of all the people that are supporting me on a daily basis. In the beginning I was swamped with people reaching out, and that was awesome, but now I am even more thankful for the people who continue to reach out. "Is there anything I can do?" is a great question, but it's not something I can always answer. "I'm coming over with snacks to watch a movie, pick the day." is something that is much easier to respond to, I can't make many decisions very easily right now, but choosing a day that I have free is something I can do. Either way, I am so thankful for all of the positive people in my life. They make this a lot easier.

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?

Mindset

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.

Adulthood

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.

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.