Thursday, December 31, 2015

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.

Saturday, December 5, 2015

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!