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!).

Simple Gifts

“It was only a sunny smile, and little it cost in the giving, but like morning light it scattered the night and made the day worth living.” 
― F. Scott Fitzgerald

I'm playing it cool right now. Not getting my hopes up, and not wallowing in gloom and despair. I've had two infusions in the new clinical trial and am feeling pretty good. There's a lingering fog, sort of - and I'm told that's normal. I'm not really as reliant on pain medications as I was (I'm taking them once or twice a day instead of religiously every four hours).

When I was in the grocery store with my husband yesterday, he seemed really happy. I asked for the reason for his grin, and he remarked that I was walking "fast". I have been able to keep a more reasonable pace in the past few days when I'm walking. I still get tired easily, and can't really stand for too long without having a little back pain, but this week is going much better than last week.

I got to the hospital Friday morning and had labs drawn, and then saw the nurse and doctor for an assessment. In the course of one week, I'd lost nearly four pounds from being as ill as I was. My lab work looked good and I was cleared to have the infusion. There was one huge difference between the first and second week, and it made all the difference in the world.

When you receive chemotherapy, it's pretty common to receive what are generally referred to as "pre meds" which is not a reception with a bunch of soon-to-be interns and residents - rather they're medicines that you take orally or via infusion that may combat some of the side effects of the chemotherapy drug(s) you are about to receive. When I was receiving infusions during my last round over the summer, I got an anti-nausea medication (Zofran or Emend).

During the first round of this clinical trial, I had no pre meds at all. I also hadn't eaten anything all day long, because I didn't know how the day was going to go, and naively thought I'd have time to grab a bite somewhere. I was also alone.

Don't go to a chemotherapy appointment alone, if you can help it.

I had a pretty bad reaction to the drug (heart palpitations, sweating, and something that starts with a "d" that I don't recall) and was given magnesium at the end of the infusion, which also made me terribly ill. Zofran didn't touch this nausea, and I was sick for days. I missed work on the following Monday because I couldn't stop throwing up. I seriously pondered quitting the trial.

I spent the week leading up to the next infusion pretty terrified and anxious. My Xanax was nowhere to be found (we found it Thursday). I really in a lot of ways, didn't want to go through with it. It's strange, but I somehow feel a sense of duty to continue this treatment. Not just for my own well-being and chance of survival - but for science. There aren't too many ALK+ out there, and it's very fulfilling to me to be able to help doctors and scientists understand what makes this disease tick. I feel like I'm giving back. I hope that the data they collect helps someone else down the road, and that makes me happy.

I don't want anyone to ever have to suffer through the things I've gone through, and it pains me to know that there are hundreds of thousands of people that are in pain, that struggle to breathe and wonder if they're going to have another holiday season with the ones they love. Someone always has it worse, and it's heartbreaking to me. We need a cure. We need scientists, doctors, and studies/trials.

The next (second) infusion came with pre meds (Benadryl, Dexamethasone and Zofran) and I have had almost no issues, save for some pretty bad leg aches the first night, presumably from the steroid. I've been able to eat a little better, and have been sleeping well. I get a little cold - but my red blood cell count and hemoglobin are slightly below normal (not in a concerning way) and that just sort of happens. The solution? Socks. Blankets. Warm drinks!

My mother visited for my last infusion, and plans to come for this week's treatment. It makes such a difference to have someone there, or something to distract you. My most positive experiences have been when a friend or family member was there to chat with me and keep me company. Otherwise, you just end up staring at the timer on the IV pole and wait for the time to tick down. Those of you that know me probably know that I like to draw and doodle. I've been chided by bosses and managers at former jobs for doing so, and even had my pens and pencils taken away by one particularly crotchety boss.

Before treatment I'll ask my husband what he'd like me to draw. Once it was a Chococat kicking a soccer ball. This last time, I drew Boba Fett dressed as Santa Claus. It's entertaining and sometimes a challenge, and it gives me a bit of childlike delight when I show him and say "Look what I drew you in chemo!" where a child might say what they drew in class. None of my drawings have made it to the refrigerator - but I haven't asked, to be fair.

Ow?

I actually don't even know that I'd want a drawing on the refrigerator. I'm a little old for it, aren't I?

Anyway, we're 9 days away from Christmas and it's bittersweet to look back on the previous year. I had been in the hospital through Thanksgiving and into the early part of December. I was very ill. This year, I feel pretty good. I'm far more optimistic. I'm nostalgic, I feel the need for warmth and coziness in some weird, homey Bing Crosby-esque sort of way. I need my people. My friends. My family. All the people I love. I need cookies, maybe.

I don't want to say the supposed improvements to my health are miraculous or miracle-driven, though I'm not opposed to referring to them as such - if that's your thing. There's a lot of thought, planning and hard work that went into this trial. There were lots of experiments, failures and achievements by tens or even hundreds of scientists and doctors who studied for years upon years to develop the brilliant and analytic minds they possess. Without them, I might not be here today.

“We have two options, medically and emotionally: give up or fight like hell.” – Lance Armstrong

I choose to fight like hell.

Things Change

I had a couple of scans yesterday (CT of the lung/pelvis & MRI of the brain). There was a bit of a scheduling/location nightmare and I ended up having a teensy meltdown (tears and all) but the folks at the hospital set things right.

Today we got the results of the CT, and they showed "significant" growth on the liver lesion (it went from 1cm to about 4cm) and growth in the lung. It actually kind of explains the pain and shortness of breath lately. I've also been ridiculously tired. I thought it was just the humidity

Because there was minor activity/growth on the liver while still on the clinical trial drug (though most areas were stable) and the growth was so significant after just 4-5 weeks... The oncologist felt that since I'm in fairly good health otherwise that it would be best to start IV chemotherapy next week.

I will be taking Carboplatin/Alimta/Avastin and each "cycle" of chemotherapy will be 3 weeks (one infusion during that time). I don't know how it'll affect me. I'm sad, but I'm not. This is a new treatment, this is a new chance to fight my cancer, and a new way to accessorize - am I right? I'm scarf shopping online, since it's possible I will lose even more (if not all of) my hair. The pre-tied wraps they have look terrible and are expensive, so I'm going to have to try and learn how to tie scarves creatively - or get a cute hat or two. Truthfully, I do not like most hats.

Right now I can barely stay awake. I would love to go home and take a little nap. Tonight, I think I'm going to try and get out of the house and have pizza with a friend. We'll see how I feel. Sometimes, I hate feeling like such a fuddy-duddy, sometimes I feel like a stick in the mud because I'm so damn tired. There's a reason I'm tired, and it's okay. I feel like I should get out of the house and do something fun this week - I might not feel like it at all come next week.

Roid Rage

Out of all the medicines I've had to take since I was diagnosed with cancer, I am at my wit's end with one in particular. I feel like a child whining about this, but the steroid I'm on (Dexamethasone) really sucks. There's a laundry list of side effects, the worst (for me) being acid reflux. When I was not on the study drug, I was told I could take Pepcid/Nexium or other things like that. Now that I'm back on the study, drugs like those are a no-go. I have to rely on Tums or some other chewable stuff that doesn't really work. I wake up at least twice a week with reflux so bad I can't get back to bed for at least an hour.

Now, I'm broken out like a leper - and I've plastered myself in calamine all over my shoulders and neck. Yes, this is also evidently a side effect. I hate it. I keep reminding myself that I had horrible headaches before I started this medicine, that in an evening they went away and I slept peacefully - but seriously? There's no end. I looked at one side effect list, and I basically have all of the "minor" side effects. Come on.

In better news, the port area seems to be healing. There's some tenderness, part of me thinks there's a little bit of suture stuck in there, but overall it's not terribly bad. I can feel it "settling" (if that makes any sense) and that's a little surreal.

It's been very hot here. We put the air conditioner in the window and now I don't want to leave the bedroom. That's fair, right?

Oh and if you were wondering, I'm still addicted to avocado. Maybe that's a side effect. Probably. I'll enjoy this sweet romance while it lasts.

If hungry + angry = hangry...

Then does happy + tired = hired? I'm hired.

I feel sort of like this weekend flew by, and I'm not entirely sure I remember all of it!

My in-laws did come to visit yesterday - we went to dinner and then walked around at the beach for a little while. The night ended with liquid nitrogen churned ice cream from Piccadilly in Uptown (mmm, salted caramel!). I worked for a little while this morning and then had brunch with my in-laws and husband earlier today.

I'd felt out of sorts all afternoon after that, though. I ended up waking up VERY early this morning thanks to some horrible reflux (thanks a lot, steroids) and ended up staying up for almost two hours while I tried just about anything (Pepto, milk, ice cream, water...) to stop the acid reflux. 90 minutes later I had to wake up for work. We went to the grocery today and I felt compelled to sit down on the floor, my legs and feet didn't want to propel me forward anymore. Luckily, we made it home.

More about steroids, though - they're funny. I hear horror stories about people eating terrible things and eating a LOT - while I'll admit my appetite has been better than it usually is, I've been craving things like avocado/guacamole and this curry kraut made by a local company. I wonder what they taste like together... Heck, I even ate gorgonzola cheese on a salad yesterday and I liked it.

If I wasn't on this ALK study drug, handling steroid side effects would be MUCH easier. They usually prescribe Pepcid or something like it for the reflux, but I'm not supposed to take those things due to potential cardiac issues with the clinical trial drug. I got desperate tonight though, tired of the burning sore throat from stomach acid - I actually took a Pepcid tonight. I feel okay and don't plan on making a habit of it, but last night was so awful I didn't want a repeat later on tonight.

The surgery site for my port is looking good - it seems to be healing nicely. In a fit of desperation to ride my bike today, I biked the short distance to my office. It's about a mile and is normally no big deal, but when I had to get my upper body into the meager incline leading to the campus quad - I really felt a pretty significant ache in my shoulder where the port is. The pain went away after 5-10 minutes and there was no bleeding... But man, do I miss riding my bike. The legs are willing, but the arms don't want to play along yet. I also still have some pain reaching to the left side with my right arm. So far, this only comes into play when I shower - or if for some reason I'm trying to do it on purpose.

Tuesday is the set-up appointment for CyberKnife surgery. They'll do some scans and give me my plastic mask (I'm really looking forward to that one, yep. Sarcasm, by the way). It'll be a week or so before the real deal, so I get to mentally prepare... Some more. I'm so impatient. I want it now. I'm like Veruca Salt singing about her liver biopsy results, or something.

I want results...
I want Foundation...
Treatment, radiation
An Amish vacation! 
GIVE IT TO ME NOW. 

Après la chimiothérapie, un tatouage.

The Clinical Trials Nurse called me two days ago and asked if I'd be able to come in this afternoon to discuss options for treatment. I was a little surprised by the urgency, but it was almost as if they'd heard my plea for urgency.

(taps invisible microphone) Is this thing on? 

I was presented with three options for treatment (that would coincide with radiation).

1. Return to the Roche trial. Originally, this was completely off the table. Once the brain mets were found, the folks running the study basically said that I couldn't continue, since a new line of treatment (radiation) was needed. I'm simplifying, but that's the basic gist of it. The nurse and my oncologist escalated the matter and went to the top of the chain, and spoke to the person in charge of the whole trial. In this option, I'd start on the Roche trial again tomorrow (Cycle #7) and stop a few days before radiation - and begin again a couple weeks after. The oncologist would have me scanned frequently to make sure the disease in my lungs and liver stays "quiet" (yes, this is what they called it - QUIET!). As long as things stayed stable and the cancer was controlled, I could do this option for a while.

2. Traditional chemotherapy. This would be a trio (I forget what they are) that is traditionally used for adenocarcinoma patients. Side effects would be greater than with the trial drug (which amounts to next to nothing, honestly). This option is likely to be inevitable, but we don't have to go there yet.

3. LDK + Chemotherapy (the most aggressive). LDK is an ALK responsive medicine that was just recently FDA approved. There is no study data on the toxicity of LDK (erlotinib) in conjunction with IV chemotherapy. This would be the most aggressive option and would most likely make me fairly weak/sick.

As of now we're going with the first option. I had some labs drawn to make sure there are no issues with blood (probably liver enzymes, etc) that would prevent me from starting the drug again (one week since I stopped). I will go tomorrow morning and pick up Cycle #7 and take the first dose. I meet with a neurosurgeon on Friday to discuss radiation and we expect to begin that in the next week or so. Again, radiation is CyberKnife surgery (which is not invasive, despite the words 'knives' and 'surgery' in play).

Scans will be within 8 weeks of the trial starting again, and my continuance on it will depend on how well the trial drug continues to control the cancer. The spot I am having biopsied on Tuesday was there on the previous scan, it's just "lighting up" more now, and they want to see if there's been another mutation (possibly EGFR), a new ALK "clone" that just happens to be resistant to the new drug, or something else.

From day one, the people at Seidman have had my back. There were times that seemed grim, and they stood by me. They really went to bat for me with this trial drug, explaining to the facilitators that I really had been responding well to the drug - the fact that they went so far for me is very touching and gives me a lot of hope.

As of today I am still technically between treatments, so I decided to go with a friend of mine and have a "procedure" done off-campus.

OH-IO!! Just kidding. I just love Ohio.

So there it is, I hopped over to Voodoo Monkey Tattoo in Ohio City and had this done. My blood levels are good and I got the OK from my doctor - so I went for it. I don't know when I'll be able to have a tattoo again, so I wanted to make the most of my chance! I was born in Ohio, and it will always be a part of me - even if I'm someplace else. It's pretty sore right now, and sleeping may be interesting but we'll work it out!

That's it for now.