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.

Hibernation

It's been almost a month since my last blog post, I apologize for not keeping you in the loop! Unfortunately the reason for most of my lack of blogging has been because I haven't been feeling too great, but I have had some great moments mixed in there and I am very appreciative for that.

When I last blogged I was beginning to feel a bit of "Biop-xiety" because I had a bone marrow biopsy coming up, and it went really well and it also went really terribly. I officially have no evidence of disease in my bone marrow (which is where leukemia originates) so obviously that's amazing. However with many types of cancers, when you get the good news of no evidence of disease, your doctor cheers and tells you that you can be done with chemo and that they will see you about every 6 months just to make sure you're still in the clear. ALL is a bit different, because people with this form of cancer are so prone to relapse. I am very fortunate that I have been able to achieve this sort of remission so quickly and effectively using solely chemotherapy (many people are required to either have a bone marrow or stem cell transplant in order to stay in remission) and hopefully that will continue to be the case, although I am finishing my intense chemo soon, possibly as early as April 18th. From there I will still have 2 weeks of radiation, and 2 years of lower doses of chemotherapy (bi-monthly lumbar punctures, monthly Vincristine injections, monthly steroids for 4 days in the pill form, and almost daily chemotherapy pills called Mercaptopurine)

That's all the good news about the bone marrow biopsy, but as for the actual procedure itself, things went terribly. [If you're squeamish, skip this paragraph] This was my 3rd biopsy, and by far the most painful procedure I've ever had (including multiple broken bones, 11 lumbar puctures, and many other crashes and accidents). The doctor who did it lucked out and picked a spot in my hip that was full of scar tissue because as luck would have it, he chose the exact spot that my last biopsy was at. He used a good amount of lidocaine, but 5 lidocaine shots don't feel great either and they sure don't help the pain of a needle going through your hip bone or into your bone marrow. I've learned my lesson when it comes to asking to see needles and test tubes of whatever comes out of me, but the needle felt exactly like he had gotten a good sized chain squeezed into my hip bone, and then he pulled it back out through a much too small hole. And this didn't just happen once, because he was unable to get what he needed the first two times. Once all was said and done, I was incredibly sore for about a week, and was still sensitive at the site for another week. My next one happens at the beginning of maintenance, so it's sort of already on my radar. I told Dr. Sharman how terribly this last one went though, and he plans to do my next one. He said he's only bent one needle during a bone marrow biopsy and it was on a retired lineman for the 49er's.

At the beginning of March I started my final 2 month round of intensive chemo, and visited my doctor up at OHSU for the first time since October. It went really well, they didn't really have much to tell me, and just answered any of my questions. They also discovered that my body likes my PICC line so much that over the course of the last few months it had sucked my PICC line like 3 centimeters further into my body than it needed to be, so it was tickling my heart. It was nice to get that taken care of, and that whole trip was very uneventful which is fantastic. During the first week I started a brand new chemo drug, and I also was taking a full week of a quite high steroid dose. It all started out fine and dandy through my trip to Portland, but by the weekend I had been on the steroid for almost the full week, and I was about to get another dose of the new chemo drug. Long story short, I hit a wall.

I don't think it was either of the drugs in particular, but rather the fact that my body has been pumped full of chemo drugs for just over 6 months at this point. I went into hibernation for almost 2 weeks. I had headaches and body aches of all different sorts, major fatigue, and a bit less than my usual positive attitude. I cried a few more tears than normal, and the pain from the headaches just absolutely wore me out. I knew that it was coming, and I was prepared to handle it, but it was rough. I finally crawled out of my hibernation in the middle of last week, but I'm still dealing with some headaches and fatigue that comes with the chemo drug. I also started another week of steroids on Monday, but this time I was prepared to deal with it: I deep cleaned the house, reorganized, got myself lined up with some healthy food choices, did some art, and started some pretty nifty crafts. So far, I'm handling it much better and haven't shown any real signs of "roid rage" yet and when I start getting restless I have about 10 unfinished projects to work on right now!

Now on to updates about the fun stuff!

I got my chickens on our way home from OHSU, they're growing like weeds, and yesterday one of them tried to fly the coop already, even though our coop isn't even built yet, so that's the plan for later this week. I thought I would have more time! They are so cute, and they absolutely love their daily worm search time (I bring them a bucket of good dirt and hide worms and potato bugs in it) and today they even got an extra adventure and got to spend some real life outdoor time in a laundry basket. I also have a bunch of raised beds ready to go, and already have turnips, carrots, radishes, peas, kale, swiss chard, cabbage, beets and spinach in the ground! It's starting to feel a lot like spring, especially since the sunshine finally came out! It makes it pretty easy to find joy everyday with all of these cool things going on in my backyard.

A huge shoutout to the awesome little art workshop that Kim Pickell put on,
it totally pulled me out of my funk and got me back to creating things! 

A List of Things

I tried writing a comprehensive paragraph, with lots of information and what-not. But it was absolutely terrible. I think I will have more success with a list today. So here is a list of things, in no particular order.

1. Most importantly, we're going to get chickens soon. I'm super stoked, because lately I've been sort of obsessed with getting back to the homesteading/off the grid sort of lifestyle that I grew up with. They will be great for recycling food that I have to throw out if it gets too old (old food+neutropenia=infections) and I just love how entertaining they are. Doctors orders, I just can't clean their coop when I'm neutropenic.

2. On that note, we also are going to build some more raised beds for the garden, because I bought this awesome survivalist package with 11,000 seeds in it. I'm pretty excited to grow some food this summer, and to feed the stuff that we don't like to our lovely future chickens. I'll have to wear gloves when I'm digging in the dirt, and I'll do my best to wear sunscreen even though I hate it. But I'm just so excited, and I am loving the fact that winter is almost over!

3. I haven't even finished my intensive chemo yet, and I'm already worrying about next school year. I'm worried because for the entire 2 years I am on maintenance chemo they will be trying to keep my ANC at around 750. At it's lowest, it was 6 (which is super terrible) and right now my ANC is almost 2,000 which is on the low side of normal. But 750 is still considered slightly neutropenic, and I will still be prone to infections and viruses.

4. A couple weeks ago one of the nurses at the clinic told me "I've never seen anyone with such terrible lab results look and behave like an actual human." She was thinking this when both my ANC and platelet counts were lingering below 10, but didn't tell me until my ANC was back up over 1,000. This made me pretty proud. What has my life come to?

5. On Monday I finished my last chemo of this phase (Phase 3, Interim Maintenance) and the whole phase treated me pretty well. I had an escalating dose of Methotrexate every 10 days, and got 5 more doses of Vincristine (which is more than most people get during their entire chemo protocol). My fingers are more numb that they've ever been, and I have had some foot cramping and random shooting pains in my feet and hands from the neuropathy. Fingers crossed it will go away someday- and I CAN still cross my fingers, but shredding cheese is questionable.

6. Since I will be moving on to my last intense phase, that means it's time for another bone marrow biopsy. #anxiety. My last bone marrow biopsy showed that after just 22 days of chemo I was already in remission, but had 0.001% remaining disease. My hope is that this bone marrow biopsy will show no evidence of disease, or NED. Keep me in your thoughts next Wednesday, it's a pretty painful procedure and I will know results within about 48 hours.

7. When I left OHSU in October they told me to be very aware of how I'm feeling and to be constantly checking my temperature because of my likelihood of getting a neutropenic fever. That was the only thing that could have delayed my treatment. I assumed I would have at least a couple, which could push my chemo schedule back a month or more. At that point, I figured I would probably finish my intense chemo in late May or June, just in time for summer. At this point (fingers crossed) I have not gotten a single fever or had any set-backs. That means that if all continues to go according to plan, I will be finished with the crazy stuff by the end of April!

8. Chemo brain is legit. Max asked me to wash the sheets on Tuesday, and I just remembered I haven't done it yet. So I've got to go do that. Right now. Before I forget for another couple of days.

One last phase of intense chemo to go!