Tuesday, April 26, 2016

False Summit

Remember that post that I titled "Climbing that Mountain" where I said that I was almost to the summit? That was a false summit. I figured with just a few days until my last intensive chemo that I was in the clear. That all of those scheduled things would happen when they were supposed to. But as I have learned time and time again through all of this, not everything goes as expected. I thought that since I had been fever free for almost 8 months, that I could make it another week. Turns out I couldn't. What would this experience be without at least one trip to the ER with a fever? It would have been just too darn easy.

It's rather anticlimactic, really. I am supposed to go to the nearest ER if my temperature gets above 100.4 and on Thursday I was feeling chilled while I was actually hot, just not that hot. I watched my temperature climb over about an hour, as I mentally prepared myself to head back to the hospital for the 3rd time in two days. When it got there, I walked into the ER with all of my necessary paperwork and was greeted with an "Uh Oh, why are you back here again?!" We were ushered into a fancy new positive pressure room with extra clean air, and every person who came to greet me donned a fancy yellow mask so that I didn't have to wear one. Test after test, poke after poke, they tried to find the source of infection.  Meanwhile the doctor tried to calculate my ANC with a mere 0.0 neutrophil number to work with. After a few phone calls, my usual jokes to lighten the mood, and a few stressed out nurses that hadn't had much experience with a neutropenic patient, they finally did what I never expected they would agree to. They let me stay.

I figured I'd be shipped away to the oncology floor at Riverbend or OHSU immediately, but they were all full. I guess I had been bossy enough with everyone that they figured if they made any mistakes or had any questions about my care, I'd let them know. And I did, for a few days, while my oncologist was away (of course the one time I really hoped he'd be around, he happened to be out of town... doesn't that always happen with OB GYNs also?) Once Dr. Sharman got back Monday morning and learned that I had an infection in my blood, he insisted he felt more comfortable with me at Riverbend even though I had been asymptomatic for three days, and raising hell to get someone to let me go home for nearly four. My logic was sound, a hospital full of people with the flu is not a good place for a neutropenic patient. Looking back, I probably should have just chilled out and let the doctors be the boss, but being the control freak that I am, that's not what I did. I'm also still not home.

I'm currently at Riverbend, getting antibiotics 3 times daily, and getting Neupogen shots to hopefully raise my ANC to anything higher than 0. Once my lab work shows that my counts are in fact improving and that I have SOME sort of an immune system, they'll let me go home. But until then, I'm cooped up here twiddling my thumbs, reading, blogging, and talking too much every time a nurse comes in my room. I feel great, I'm ready to conquer everything that has been delayed (one last intensive chemo and a lumbar puncture) as soon as I get out of here.

I am thankful for qualified medical staff. For kind, compassionate and knowledgable CNAs, RNs, pharmacists, and doctors. Hospital cafeteria staff, you could use some work. Science, you saved my life again.

I'll Pay it Forward

The shock, immediate feeling of gratitude and feeling of an absolute need to pay it forward still hasn't passed, it never will. But today I made yet another nurse cry with this particular story, so I felt the need to share it with a bigger audience. I didn't want to in the beginning, because I know there are people in need all over the world. I know there are people who don't have even half of the support network that I do. I'm not a religious person, but the word blessed comes to mind; as does fortunate, lucky, and just plain privileged. And I am, I know that. But I mostly am because of the amazing people that I have in my life, and that's why I wanted to share this. Sometimes I feel a bit guilty for all the love and support I've gotten not just through this season of life, but through them all. I want other people to know that every small thing they do for good can end up being a part of something so huge in a person's life. Your acts of generosity can make a person feel the way that Max and I felt in early September.

I'll start with a recap of the situation. I was diagnosed with Leukemia after teaching my first day of 6th grade science, a brand new job to me, but a job in the school district I had grown up in. I was replacing a retiring teacher whom I had looked up to for years, and had just become a colleague to almost every teacher I had ever had. After finishing my first day of the school year, I had been told that I wasn't going to be able to teach this year. That broke my heart, but little did I know I would have the opportunity to continue teaching. Right now I want to teach you to keep your faith in humanity. People are innately good. Friends reading this, our 'old' teachers are good people. Parents, your children's teachers are good people. Students, your teachers are good people. Teachers, you are good people.

I had 11 sick days that I would get paid for while away at OHSU, and then I would be on leave without pay. We would lose our main source of income this year, because Max was student teaching. We would lose our insurance because I was the one getting paid to work full time. The only thing that could change that was how good the people we get to call colleagues are.

And boy are they good. A teacher's contract is something around 200 days. And my wonderful colleagues donated that many sick days to my account so that Max and I could still have a paycheck and insurance through this whole ordeal, and through the entire school year. If they hadn't done that we would have lost a huge (especially in our minds) amount of money, and we would already be hundreds of thousands of dollars in debt because of medical bills. To give you perspective, my last bag of chemo is priced at ten thousand dollars. If not for the wonderful people working in our schools, we would be bankrupt and 100 times more stressed that we are now. So teachers, thank you for our house, food, medical care, and our relative peace of mind. Some donated many sick days, others donated just one. But they all added up to make a huge difference in the lives of two people just trying to pay the bills. We owe you a lot.

You don't get this kind of treatment anywhere else in the world. People say that the place to be when you're sick is the big city so that you can get the best treatment, and I've done that when needed. But the more important kind of treatment is the way that people treat each other. I'm from a community that rallies behind its people through the highs and lows. I wouldn't rather live anywhere else in the world. I can't wait to get back to work next school year, so that I can start paying it forward. I owe this place everything I have, and everything that I am. I will pay it forward.

Sunday, April 17, 2016

Climbing that Mountain

I'm almost finished with my very last phase of intense chemo. I didn't anticipate that this all would actually fly by, but it definitely has. Between blocking out my memories of the bad days, forgetting about the uneventful days on the couch, and enjoying my good days to the absolute fullest, I've almost done it. I still have 2 years of chemo to go, but I could equate my feeling now with being just a few feet from the summit of a very large and treacherous mountain. To get to where I am, I took all the steepest paths and there were no shortcuts. I felt a great deal of pain, and pushed through- always with the end in sight. But now? I can actually see it. My last intensive chemo appointments are scheduled. There's no turning back. I don't feel so sick. I'll feel like I've really hit the mountain top on the day I get my PICC line removed. I've been staring longingly at every body of water I pass, whether it's the clear cold lake, or my bathtub down the hall. My left elbow longs to be submerged. My maintenance chemo for the next 2 years will (hopefully) be a breeze, especially compared to what I've done in the last 8 months. Once we get everything figured out, I'll only see the doctor once a month and will get my chemo then, by IV. While I'm so happy to have my PICC line out, I'm not looking forward to the 24 lab draws by needle, or the 24 chemo infusions by an even bigger needle. But it's a downhill slide none-the-less. Before we know it I'll be at the bottom of the mountain and ready to carry on with my life. I know there will be other mountains, and I know I can do what I need to do because I've done this. And this has been the hardest thing I've ever done.

Now let me give you a quick rundown on the last month or so...

I had a headache for about 3 weeks which was pretty terrible, and they still come and go but less frequently now. In the beginning it was full blown migraine symptoms, with my hearing fading in and out and being super sensitive, tunnel vision and sensitivity to light, and them often lingering for days and keeping me awake at night. I finally gave in to doctor's orders and got an MRI. The crazy part (other than the fact that the MRI machine looks like a spaceship) is that they could actually see the area in the left side of my brain that had been impacted by the migraines. The MRI machine sounded like a jackhammer, which of course gave me another migraine, and I can't get my nose ring back in. But all is well in my brain.

In the last 2 weeks I spent 8 days getting chemo in Eugene. I can say I'm getting a little sick of the drive, although it has been absolutely beautiful out and at least it's not trips to Portland! It is curvy though, and last week they didn't give me any nausea meds, and I didn't notice until the trip home. Then I noticed, and I puked a lot, and now I really appreciate the nausea meds because they work (when you get them)! When I started chemo I absolutely pictured it just how it is in the movies: bald, pale and puking a ton. For me only 2 of those things have been true the majority of this time, and fortunately I've missed out on the worst one for the most part.

Last week I had a terrible terrible (worse than all the others) lumbar puncture. You know it's going badly when the doctor has tape across the bridge of his nose from the last patient, and he says to you (after the 3rd try at getting spinal fluid) "I'm going to go get the other doctor, he's really good at these" My thoughts, you ask? Wow, we should have started with the really good doctor, shouldn't we have? This of course came after our 5 hour wait to even get the procedure started, and afterward I still had to lay flat for 2 hours. Needless to say, it was a long day, and lumbar puncture #13 was NOT a lucky one. I was supposed to have another one this last Thursday, but I asked that it be delayed because I was still sore and bruised from the last one. The delay is almost up, and lumbar puncture #14 is happening on Tuesday. Fingers crossed it goes a little better!

For those of you who remember me mentioning that I could potentially be done by April 18th, obviously that's not the case. At the beginning of the month my ANC had to be over 750 to move on to the second half of the phase, and it was 500. That meant that I had to delay by a week. But it's okay, because I ended up being able to take a trip to Washington with the family for my cousin's baby shower! That means I'll be an aunt soon, right? right? Yeah, something like that.

And this is the part of my blog post where I would normally update you on my chickens and my garden, but Max told me that he's pretty sure everyone knows everything about my chickens. So if you don't, go look at my Instagram. It's become my Chicken-gram. And my garden? It's doing great so far! I picked a spinach leaf out of the raised bed yesterday and right as I was about to eat it my dad reminded me that it could have bird crap on it, and it had just grown straight out of compost. I reminded him that my ANC was over 1,000 and ate it anyway. It was delicious.

It's far too beautiful of a day for me to spend more time writing, and I'm sure that'll be a pattern here for the next couple seasons. I'll try and keep you posted, but don't count on it. If I'm feeling good, I'll be outside with my big floppy hat, my sunscreen, my garden, my chickens, my dog and my husband.