Countdown to Chemo

I start chemo on Wednesday, so this is the last normal night (where my day tomorrow will be a day that I am familiar with, vs a day where I start a treatment that historically is very hard on bodies). I hadn't considered how strange it would be to have this little countdown. Do I take advantage of the last normal night to have a drink? Do I do something special? These are things I hadn't really considered until a little earlier, and where I've landed is "drinking a non-alcoholic beer and watching a baking show on TV with the cats." This is a very normal night. It's nice. 

I have had a number of moments since my diagnosis where I've thought (and sometimes said out loud): I want to remember how nice this moment was, how normal this weekend was, how lovely it has been to spend this time with the people I love while I'm still feeling good and doing well. I don't want to take this for granted. I want to tuck this memory away so I can revisit it when things aren't going as well, to remember that I will have these moments again. 

I am sitting in a comfortable chair, the weather is perfect, and I am having a lovely evening in my home with my cats. I feel good. I'm grateful to be in a position to go through these treatments, and I'm feeling optimistic about my future. 

Bone Biopsy Results Are Back and They Are Good

Bone biopsy results came back clear! The cancer has not metastasized, and so we can begin chemo (and continue with the very aggressive treatment plan) with the hope of totally clearing it out. 

This is a solid start to the weekend.

I got a bone biopsy and it wasn't that bad

Yesterday, I had a bone biopsy. This meant light sedation (awake but very relaxed), no unclear liquids after midnight (black coffee is a clear liquid and I am so, so grateful for this), couldn't drive myself to or from the hospital, etc. The biggest challenge is not accidentally doing the normal things I would do out of habit (mostly: eating breakfast). 

I've had a number of regular biopsies, and I don't enjoy them because the numbing process is painful and unsettling, and then I'm sore for several days after. They're fine. I'm happy to get them done. They just aren't any fun. I expected the bone biopsy to be worse, because it's a bone biopsy, but actually it was a little easier! For one, they were able to use my port for the first time to do a blood draw and then set the IV for the medicine I'd be getting during the procedure. 

The port is awesome. It means I don't have to get stuck in my arm for any of that stuff. There's already an access point. This was the first time it was used, and the nurse walked me through everything she was doing so I'd know what to expect. It's very cool. It's a little bit like being stabbed in the chest by a LARGE pushpin when they put the needle in (not bad! just unsettling!), but in future visits, I'll have had time to put some numbing cream on it so I won't even feel that. It's taken more than a week for me to get used to the sensation of the port under my skin, but I'm finally feeling pretty normal about it and getting to see how it works was really cool.

The main things about the bone biopsy (they were trying to get a sample from a lesion on my spine) that the nurse and doctor mentioned was that I shouldn't feel anything (aside from movement. pain is not normal, movement and pressure are normal, as the other biopsy surgeon liked to repeat) but I might hear some weird stuff. "I might have to use a mallet to get the needle into the bone" and "there is a very small chance of spinal column injury but it's extremely unlikely" are not sentences anyone wants to hear, but it went very quickly (shockingly quickly, to the point where I was like "What, really?") and I didn't even really hear weird stuff. I was very relaxed, it didn't hurt at all, and I am feeling good today. My back was sore for the afternoon, but it was more like a muscle tightness than anything else. The biggest challenge was getting the original dressing removed and putting a band-aid over the spot by myself. It's very difficult to do when the spot is in the middle of your back and you are using a mirror as a guide! But I did it. 

The results should be back in a couple of days. The biggest concern is that they missed the lesion and just got regular bone, in which the results will be inconclusive. But everyone seemed confident that they'd have everything dialed in to get the samples needed. I'll update when I have more information!

A quick aside about work and cancer and "feeling normal"

As I mentioned in the first cancer post, I left my job in February, and I have been looking for a new one that will be interesting and challenging and fulfilling in the ways I know a job can be. I've found some good stuff, I've gotten pretty far in some interview processes, but I haven't landed anywhere. And that's ok. I've done a little contract work, I've done a tiny freelance project, and I've been actively looking, and interviewing, and working with outplacement coaches, and redoing my resume (so, so many iterations! so many!).

I'm on unemployment, which necessitates at least three work search activities each week. One of the questions they ask you as part of this process is "were you able to work every day this week?" and the answer so far has been "Yes." I don't anticipate that changing, even after treatments start. The work I do is primarily editorial, and can be done on a computer from anywhere. Part of me thinks it's strange and foolish to not just step away from the work stuff, to take a break from thinking about this uncertain future, but the rest of me wants to keep things as normal for myself as possible, for as long as possible, since there will be SO MUCH that is not normal.

There's a lot of mental tension around knowing things are going to be different but not knowing how they will be different, wanting to keep as many of my routines as I can, not knowing what I'll have to give up, etc. Even when I think I have a schedule, it can change if new information comes to light. There's so much uncertainty. 

After the MRI results came back, I spent a couple of days thinking about what my life might look like if my cancer had metastasized. It was an interesting exercise, and one I have encouraged my parents NOT to do, because why would you worry when there's not yet anything to worry about? We all handle things differently. What is interesting for me to consider is devastating for them. I don't think about these futures because I'm worried. I try them on for size. I check with myself to see how I feel about these possible paths, because maybe it'll help me prepare for news when it finally arrives. I ask myself, if I had five years, would I feel cheated? No. You can do a lot of things in five years. If I had less time, it would still be enough time. Any amount of time is enough. 

Most of the time, though, I consider that maybe I'll go through all of this and come out cancer-free, and then I'll have time and health, and my future will be just as much of a mystery as it is right now. And I don't want to put the work of being alive and navigating that unknown future on hold for the months of treatment ahead of me. And so, I continue to look for work and think about what I want to do with whatever amount of time I have.  

A bone biopsy is in my future

I've got a bone biopsy scheduled for next Tuesday morning! I'm very, very excited that they were able to get it scheduled so quickly. This does continue to push chemo back, but I will simply cope by eating spicy foods and ordering undercooked dishes and appreciating how everything tastes normal to me right now. 

I'll continue to put updates here, so if you message me and I am super tired of going into detail about what's going on (because I go into everything here on the blog!), I'll just direct you to the blog. That's why I'm doing the blog. Please. If you wonder how I'm doing or what's going on with my schedule, it's going to be here! 

Perhaps this will be helpful to you

 I don't really know what's useful to other people, but I'd like to tell you how I'm thinking about things. (I have been assured that saying "well when you think about it, people die all the time in all sorts of ways and they don't have any warning at all" isn't helpful.)

So one of the ways I move through the world is to make decisions based on a very simple decision tree, which basically goes:

What do I actually want?

    Can I get it?

        What's the best version of the thing that I can get?

            How do I do that? 

What I actually want is to not have ever had cancer. That would be much more convenient. Can I get it? No. What's the best version of the thing I can get? To get the best treatment possible that balances my quality of life with good outcomes. How do I do that? By doing what I'm doing. 

I have great doctors, I ask questions whenever I have them, I understand why they want to do the tests they want to do, and I understand what will change depending on the results of those tests. The uncertainty right now is complicated for me and for the people around me, and I respect that. It might be harder to be my partner or my parents than it is to be me right now, because right now, I still physically feel fine. And I'm making decisions about my health. They can and are doing a ton of things to help me! And also they can't really do anything. There's a lot of control that you just have to give up when you're doing this. It's not comfortable.

I don't know what the biopsy results are going to be. I don't even know when the biopsy is going to happen. I know that whatever happens, I'm going to listen to my doctors, and I'm going to make decisions that make sense for me. I continue to not be upset or afraid (I was a little bummed when I first got the news today but that quickly settled into "hey I'd be really cranky if I got chemo and that wasn't the right course for me"). 

I sometimes wonder if my repeating that I'm not upset or afraid will come across as trying too hard to convince you that I am neither upset nor afraid, but I just want you to understand that this is how I am feeling. This is where I am at. You don't have to be there. You are going to feel whatever you're feeling, and you're going to be even more powerless than me to change things! I think that's kind of great. It's very freeing to know that you're doing all the things you can do, the things you're supposed to do, and things are going to just go however they go. 

There are many wonderful things about believing that you are in control of your life and your body and your destiny. And in many ways you are, and those things are true! But sometimes you forget that you only have this time. I'm spending a lot of mine appreciating the days I'm getting with my friends and my family and my cats and this body. I think some people get kind of mad at their bodies when cancer happens but I have had a GREAT time in here. I intend to continue doing that. 

I don't think there are any bad outcomes to be had here. There's good news and complicated news and a lot of waiting and a lot of tests, and it's all just part of this very long process. 

MRI results, changes to the timeline

Got the results back from the MRIs they did on my spine last week and the radiologist identified a couple of very tiny spots that they felt could be cancer. My medical oncologist is skeptical, as these are different from the areas that the nuclear bone scan showed as suspicious, but in order to be sure, we're postponing chemo for now in favor of trying to get a biopsy done. The tricky thing is that the spots are so small that the technicians might not be able to get samples. If that's the case, then chemo is back on and we'll just keep an eye on those areas.

I asked the doctor how things would change for me and my treatment based on whether or not these spots in my spine are cancer, and basically right now, if the cancer ISN'T in my bones, we're trying to cure it. So that's why I have such an aggressive treatment plan and I'm doing such serious chemotherapy. Ideally, at the end of all of my (currently) planned treatments, I'd be cancer-free. (I'd be fine with this, though the path to that outcome would be really, really rough.) If the cancer IS in my bones, then instead of trying to cure it (too late for that!) we'd be trying to manage it and keep it from spreading, which would entail a gentler regimen and probably a pill-based treatment. This would be easier on me in the short term, but in the long term, I'd have cancer. (I am fine with this too. Lots of people have cancer. Including me!)

So now I'm just waiting to see if and when they can schedule a biopsy, and I don't know if I'll be doing chemo or not. 

The initial feeling of the phone call is a bummer. But that's just the process of discovery, and I'd rather move forward with more information. I was excited (this is not exactly the right word) to get started with chemo, but if it wouldn't be the right course of treatment for what I've got, I'd be happy to skip it.