The Chemo Monster

Today I would like you introduce you to my liver. 

That's right, that's my dirty pig of a liver - gobbling up chemo but not really getting any better. Dirty piggy liver, it eats it up and...Nothing. I had a CT scan, and yesterday was the first day an oncologist would not feign a toothy grin. Truth be told, I appreciate that. Battling cancer isn't all sunshine and roses. Most anyone who pens a blog and says it's been easy or only tell you the good parts is hiding something - maybe for your sake, or maybe for theirs. 

My liver hasn't wanted to cooperate for a really long time - the best response I had was on Alectinib... And even then there was slight progression. When I stopped Alectinib there was a lot of progression and that was what led me to go to traditional chemo (which didn't work on the liver either). 

I'm numb right now, and I'm annoyed. I'm not mad at my doctor - he's doing everything he can. In a way he almost seemed as pissed off/confused as me. I also think he and my nurse expected me to burst into tears. Not going to happen. I had my cancer cry when I was diagnosed...I still get upset but I'm not going to get discouraged. 

Right now, I'm in a little pain. I don't know if it's because it's cold or if it's the cancer. I sent an email to my nurse. I hope to be on a new drug next week. Until then, I wish I could just sleep. I really, really want to see some improvement/control in my liver. Please let Zykadia work. 

Fighting the Good Fight

Today we visited the Radiation Oncologist to discuss Thursday's MRI. On the day of the scan itself, all we knew was that there were new spots (worms, except not really - it's cancer!) on the brain. We found out that the spots are "teeny tiny" and that they're not an immediate concern, considering I am on treatment for the lung and other mets (bone and liver) via chemotherapy.

We're giving copies of the MRI to my current oncologist to see what he thinks. Right now, the verdict is that the brain metastases are so minor and non threatening at this point, that the Radiation Oncologist wants to follow up in two months and see if anything has grown. My guess (as well as the doctor's) is that the liver is a greater risk/threat and should be stabilized/treated before we'd do anything for the brain. I'm excited for next week's scans to see what has happened. All I know is that overall (aside from the occasional nausea/pukefest) I'm feeling pretty good!

There was a time before I started this trial where I wondered if I'd ever know what it was like to not feel pain again. After two infusions and an adjustment in my pain medications, I started to feel better. Now, I'm exercising and am able to walk a lot more. Today, we walked quite a distance within the hospital and I walked with my husband to the parking garage, instead of having him pick me up. Right now I feel like I've got a little cold or something, because I'm sniffling a lot and it's been a little harder to breathe, but it doesn't feel like it's in my lungs. My O2 saturation is 99/100 and I don't have a fever at all. I'm treating that and just relaxing today.

I honestly expected the worst, today. It's easy to be pessimistic when you've been diagnosed with lung cancer only a day after a routine office visit. Nowadays, I prepare myself for the worst before every visit. I don't think of it as being negative, I think of it as being realistic. Today was a bit of good news, in my mind. Even if radiation is in my future, I feel like I know what to expect. I know if I get radiation, it's possible (if not likely, depending on the type of treatment) that I'll lose my hair. Big deal. All I really want to do is live - and if I have to deal with unpleasantries to survive, then that's what I have to do.

Either you accept that it's truly going to be a battle, or you don't. There really is no middle ground.

Just an ordinary day...For once.

I almost don't want to jinx this, but this is probably the best couple of days following chemotherapy I've had during this trial.

On the evening after treatment I normally have aching legs that feel like growing pains (remember those?). Friday night? No aching at all. The following days usually have me sluggish and nauseated, and I've had none of that. In fact, I spent a good portion of the afternoon straightening up my house. I went shopping in the evening and walked a lot...Without pain. I woke up this morning feeling fine, and ate a normal breakfast with no nausea.

I've had some headaches lately and was actually a little worried, but I finally got to opening the nasal spray the doctor prescribed (because I'd been complaining of a runny nose) and it works. I feel MUCH better. Some of you already know this, but I can be a little stubborn with meds. I've had more than one nurse give me the "don't be a hero" speech.

I got some curtains hung in our "office" room (with the help of my mother), and that seems to be helping a lot with the draftiness. I have curtains to hang and will recruit my husband to help with those - probably not today because, football.

I commented to my mom and husband yesterday that for the first time in a while, I didn't feel like I was sick - almost like I don't have cancer at all. I highly doubt that such a miracle has occurred, but it's a good feeling. Don't worry, I'm fully aware of my illness and don't foresee any future meltdowns the next time I have a twinge of pain or if I throw up. I know. 

I got an Amazon Fire Stick for Christmas, and it's really cool! We have a Playstation in the living room to watch Netflix and other things on, but the television in the bedroom doesn't have anything like that. #firstworldproblems

Anyway, now we can watch videos/movies on Amazon Video, Netflix and a bunch of other stuff in the bedroom. I really wanted to have it for the days I feel bad and need to rest. It's really great though! I've tested it out a few times and it was super easy to set up. I promise I'm not a shill for Amazon, I just really like it. 

I explained to one of the doctors on my team that I've been doing strength training. She seemed concerned and insisted that I don't do things like lunges and squats (I don't). I explained that I have been using resistance bands and I even use an exercise ball for crunches (are you having déjà vu yet?). Water aerobics start tomorrow night, so I'm really excited for that. 

My mom just left to go back home, and so it looks like it might just end up being a lazy day for me. I have never ventured into the basement to do laundry, maybe I'll do that.

Health is everything, when it's in stock.

I've been sick most days (but not today, woo!) and I almost entirely blame it on a certain pharmacy that I'll just refer to as Voldemort (in other words, I shall not name them).

Wheehee! I fill prescriptions!

I called them on the the 30th (of December) and asked for a refill for an anti-emetic I have. At the time, I still had 7 pills. They said it wouldn't be immediate because of the holiday, but that the prescription would be filled on Friday. I got a phone call shortly after my treatment on Friday from Voldemort and they said it would be Monday. Frustrating, but okay. My nausea is usually worst the few days after treatment happens, and I was running out of my medicine. We went Monday night to fill the prescription and they still didn't have it. Voldemort said it'd probably be Tuesday or Wednesday.

Guess who didn't have the prescription Wednesday night?

My bad.

Almost every day since I have had treatment, I've thrown up. I have other things which I've been told can act as an anti-nausea/emetic but they take a while to work. Not good in my situation, where I don't start to feel crappy until right before I get sick. 

I work in a small office with one other person, usually a student. In these cases, I am in charge - the assistant I was with yesterday was new and wouldn't have been able to be left alone. I started to feel sick, so I excused myself. I came back, watery eyed and chilled, only to have to leave again 5 minutes later. I panicked, to say the least. My hands were clammy and I was trembling, I didn't know what to do. What if this didn't stop? I didn't tell my assistant I was ill, that's a weird hangup of mine. I don't particularly like to announce that I'm nauseated and will probably have to run out of the room at any second to toss my cookies. 

#breakfastFAIL

I went back and sat down with a cup of water, and proceeded to get very, VERY sleepy. I couldn't keep my eyes open, and all I wanted to do was sleep. Either my assistant was oblivious or very polite. In either case, I was grateful. I decided I should probably eat, and warmed up the diced steak and ramen noodles I'd brough. By the time I had a few bites, I was awake and alert and actually felt pretty good. I made it through the rest of my day with no troubles.

It's Thursday and I still have no medication. I transferred the prescription to another (competing) pharmacy. Voldemort was not apologetic in the least. Whatever, Voldemort. 

The good news is that I started lifting weights again. If you're a cancer patient and miss physical activity, check with your doctors. The consensus at this point is that I can exercise "as tolerated". Because there are metastases in my hip, some exercises I used to do are pretty painful. You can modify things, though.

Instead of sit-ups/crunches on the floor, I do them on an exercise ball with a medicine ball in my hands. 

That way, my pelvis isn't on a hard surface. It takes the pressure off but still lets me get some core training in. When I'm stronger this will be helpful (for you know, biking eventually). 

I use resistance bands for both upper and lower body exercises. I don't have to have a metal bar or heavy weights to contend with in case my strength fails me. One example is a chest press that looks like this:

Again, no barbells. My gym has bands with varying degrees of resistance - you can still get a pretty intense workout! It's good to push yourself, but know your body. You will know what's too much. I still do a bench press with the traditional bar because I'm stubborn and I prefer keeping proper form, which is harder to do with that exercise using resistance bands (for me, anyway). 

Having cancer doesn't necessarily mean an end to physical activity. Check with your doctor to see what he or she thinks you're capable of. I'm starting water aerobics soon, which is an impact-free way to get in some cardiovascular exercise. I used to think that water aerobics were for frail old ladies (sorry, old ladies) but it's actually pretty challenging! I did however manage to do a Zumba class. I only stepped out for one song. I was not in excruciating pain, but felt that I might suffer more soreness than I was willing to contend with had I stayed in the whole time. 

Treatment (Cycle 2, Session 2) is tomorrow. My mom will be here today, I'm happy about that. She takes the bus to see me and has no music to listen to, so I'm giving her an mp3 player when she gets here (loaded with music). 

Happy Thursday!

♬ Come with me, and you'll be, in a world of cancer fascination...♬

Part of what fascinates me about cancer is how it finds creative ways to try and kill you.

For me, it started with a huge blood clot in my calf (deep vein thrombosis). I very nearly shrugged it off as pains from being the Magnificent Cycling Goddess™ that I once was.

We got massages at the end of the first day of a 150 mile bicycle tour in August of 2013, and a friend bragged that he had a masseuse that made it "hurt so good" and I was jealous. I had a lady who wanted to anoint me with oils while she tenderly stroked my arms and legs. I felt cheated. Had someone really gone to town on that leg, something really bad could have happened.

That September, it tried to kill me by flooding my pleura with 3 liters of fluid.

November, it filled my pericardium with fluid. I was in the hospital a very long time.

Maybe it weirds you out that I find this fascinating, but I do. I didn't do anything to cause my cancer that I know of, but something in my body decided it should make those cells and "divide and conquer" my body.

Why'd you do that?

It's weird, right? Sometimes people are more prone to cancer because of their genes, but not in my case. Not in a lot of cases, really. Smoking increases your risk factor for cancer, but think of all the people that smoke for years upon years that never get lung cancer. I have been pushing for my parents to stop smoking for a while now - my Dad has COPD and emphysema and still smokes a lot. 

I know what it feels like to not be able to breathe. I remember getting exhausted walking from my driveway to my old apartment, it's terrible - it HURTS. I don't hold it against them, I understand there's a chemical addiction, and that their brain receives some signal that tells them "Yeah, this feels GREAT!" when they smoke.  I just wish they wouldn't do it. 

It's not like the flu or some other virus or a bacteria. Fun fact? You can simply exist, and get cancer. 

Tell your friends!

Which, by the way - I'm terrified of getting the flu. Yes, I got a flu shot like everyone should... But the main strain of flu that's floating around isn't covered by the most recent vaccine. Well, that's just FANTASTIC - coupled with the fact that I work in an office where there are plenty of hygenically-challenged people coming in. I should buy stock in Bath and Body Works hand sanitizers. It is always amusing to talk to a candidate when I have a face mask on, though.

Wait, why are you running away? Stop!!

I don't always wear one, but when someone comes in and appears to be particularly sniffly/coughing or snotty, it's on. 

I had the ick this weekend after chemotherapy. I started the second cycle of the clinical trial I'm on. I was okay on Saturday for the most part, but got very cold (nope, no fever - in fact my temp was 95.8 on two different thermometers) and sicky. My main issue with vomiting/nausea is that sometimes I can't tell the difference between imminent barfing and "hey, you should probably eat some chicken or something". I felt kind of off this morning and decided to stick to baby cereal but the ick didn't go away so I chanced it and ate some chicken adobo. Guess who feels a little better now?  

One guess. 

Who knows what tomorrow will bring. 

Hello, 2015!

In 2015 I resolve to kick cancer's ass.

I've felt pretty good lately, it's hard to believe that only a month ago I was having horrible leg and hip pains - it seems like it was yesterday when I was basically writhing in pain, begging my husband to make it stop (while I waited for my pain medication to kick in).

I had to take Tramadol every four hours. If I forgot, it was much harder to control the pain. I'd forget to take the medication, or avoid taking it because I hadn't had anything to eat and was afraid of throwing up, and by the end of my work day I'd hobble to the car while fighting back tears.

Today I take two Tramadol per day (morning and night) and it's more or less a maintenance thing for me. I've had days where I didn't take any at all, and I was okay. Monday, I took a Zumba class and only sat out one song because there were a lot of moves that put most of my weight on my gimpy left hip. I felt good and had some soreness afterwards (but who wouldn't after not attending an exercise class since the spring/summer?) that was easily controlled with OTC pain medication. Cold weather slows me down, and it's been very cold lately. The wind takes my breath away, and the cold makes my body ache. I sat in my living room this afternoon in a hoodie, hat and warm pajama pants.

I can sign up for water aerobics tomorrow, and the classes begin in the middle of this month. I'm excited to exercise again, I've dealt with a lot of pain in my recent past and it's prohibited me from exercising much. I need to get a set of resistance bands like these (I used to lift heavy before I found out about bone metastases) or just see if the gym my husband has access to has them. I miss my bike and I miss weightlifting. I think I'd do far better if it was just a certain food I had to give up, rather than a cherished hobby like cycling.

So here's a question: If you had to, would you rather give up a food you really liked, or a hobby/activity you really enjoyed doing?

I hope everyone is having a great 2015, so far. My mom is here again (she comes up for treatments) and I made pork and sauerkraut for dinner. It's probably the best pork and kraut I've ever made - I switched up and actually used a recipe this time (I did not use shallots or onions) and didn't use beer. The small amount of vinegar really made the kraut tart and I loved that.

Cycle #2 of the clinical trial begins tomorrow. At the end of this cycle, I'll have a scan. It's weird, but I'm actually looking forward to scans (we'll see how I feel when it gets closer to the scan date!).