I just wanna fly.

Here. Have an earworm.

When you have cancer you forget that you can also get "sick" as in get a cold, get a stomach bug...

I forget, anyway.

I sort of felt off the past day or so, I have a little cough that doesn't amount to much and my nose has been running for what feels like two years (no, seriously). This morning I woke up early because I had forgotten to do something for work before I left last night so I had to get up and send an e-mail, and I notice my throat hurts and sort of has that yuck factor to it. We'll see, but I'm pretty sure I've got a little cold.

This happened not too long after I left the hospital in November of 2013, too. I'd been in the hospital over two weeks and had undergone a fairly major procedure during that stay. I got a little virus and...

Freaked. Out.

That's when my doctor and the clinical trials nurse I was seeing at the time introduced me to Xanax. I can still remember sitting in the atrium area of the cancer center one late afternoon in tears, when the nurse asked me if I'd ever dealt with anxiety before. I really hadn't - at least, not from any medical standpoint. I've never really been one to hop on any drug bandwagon, so it never really crossed my mind. Cancer is stressful. It makes you worry, so what? You deal.

Except in some ways, I wasn't dealing. I did have issues with anxiety that I was not addressing. I do not mean for this to be a glaring advertisement for Xanax or anything like that, but there have been some times where it has really helped me out. Anxiety medication is not intended to be an escape. It will not make those problems go away - that's important to understand! Sometimes I feel like I'm a broken record because I get a pretty serious feeling of déjà vu when I start to type out the words "ask your doctor" but it's honestly the best thing to do if you're not feeling right, or you have a question about your care and well-being. 

Moving on, I meant to write about something last time and I completely forgot. The topic contains so much content I didn't feel like editing my last entry, but it didn't feel like it warranted its own new post either (maybe it does, who knows?).

I am really afraid to make plans. Two years ago we'd made plans to go see Andrew Bird perform at one of his rare Gezelligheid shows in Chicago - they're shows that are usually performed in cathedrals/churches (video) in only a few cities. They're more intimate shows, and I just love the acoustics in big churches. I'd really wanted to go to one for a long time, so I persuaded my husband to buy tickets for a show in Chicago in December of 2013. When I asked him, I was actually feeling good and figured it'd be a good time. 

I didn't get out of the hospital until just a day or two before the show. I was in no condition to ride in a car that long, or sit at a concert. We didn't go, and I was heartbroken. I really didn't feel like I could, or wanted to ask to go anywhere again. There have been no Gezelligheid shows since.

Now, we have plans to travel in May and June. I'm excited, but I'm horribly pessimistic about it. There isn't a day that goes by where I don't worry about whether I'll be able to go or not, or who will go if I can't, or... Well, the list goes on. I have told my husband that if for some reason I'm unable to go on these trips, he should still go - and he does not agree with me. Go. Go. 

Take the damn trip, you!

I really should just think positive about it - just like with everything else... But it's hard. What I kind of want to do, is have a tantrum about it. Dammit, can't I just go on these stupid trips? Cut me a break, here!! Even if I have little to do than be a lazy tourist, I want to be one. I want to go to California. I want to go to Colorado. I have never seen these places before and I hardly see a point in waiting to go. LET ME BE A STUPID TOURIST, OKAY!? (end flailing)

Waiting for what? When is the perfect time to go, really? 

I don't feel like I can make these plans though, or that I deserve to in some way - and I know that's cruel to say (even about myself) because I totally deserve to go on a trip, I don't care if it's 50 miles away or 5000 - I should be able to go. I'm sick of feeling this way.

I'm going to go. Don't mess with me, universe. 

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. 

Greetings, from infusion!

My internet connection isn't great, but I'm going to try and post a blog.

I've been at the cancer center since about 9:45 this morning (I had to meet with my oncologist) but the appointment to see her was super delayed and we didn't get in until 10:30 or so. She explained the chemotherapy medicines (Carboplatin/Avastin/Alimta) and possible side effects.

We also got information back from Foundation Medicine - there are two more things (mutations?) that were found in my biopsy. There are some clinical trials that involve those new mutations, but the information on them is very limited, and we do not feel it's a good idea to deviate from our current chemotherapy plan. It's very good to have this new information though, because should newer treatments or trials arise in the future, we know that I could be eligible for them.

It's about 1:45 now and I have not gotten my first chemo infusion yet. We had to wait on some labs to come back, and they're ordering medicines to take before I start infusions (anti-nausea I think). I have to ramp the steroids back up today - but only for a couple of days. I was told I'll get tired, but that most side effects (if I have any) will be in a few days, or when we're supposed to be moving stuff. I know nobody will judge me for not doing much/anything in the way of moving but I still feel bad about it.

We went to a BBQ place last night for dinner, it's about a 60 second walk from our new place. It was really good, and we got to have dinner with two of our friends. We picked up some hard candy and snacks on our way home. I bought some lemon drops and some Kind bars (those are yummy). The lemon drops are great!

They did come in to set up my first infusion (Avastin) a little while ago. This first one will take about an hour and a half. I'm about to eat a sandwich that my husband brought over. This infusion is slow, because they have to monitor my blood pressure closely. I'll post more later!

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.

CyberKnife Episode IV - A New Zap

Today's music will be brought to me by Star Wars. We're even going to put the 20th Century Fox intro on the first track, I think it would be amusing if it played as the heavy lead door to the room was closing slowly - but that will probably not happen.

We looked at some apartments yesterday  and I feel that we're very close to finding something GREAT! I do not want to reveal too much because I'm mildly superstitious about it, but I've got my fingers crossed. As of now, it's all I can think about.

I e-mailed my nurse about the leg cramps I've been having - I know I've spoken about them before but they're increasing in frequency and pain level, and they mostly happen at night. Sleeping has been a little better, I'm crediting melatonin and the fact that I took the steroid MUCH earlier in the day yesterday. I've also been trying to nap/sleep more, and that's been beneficial.

I have to remember to do things for myself, to be good to myself. To not be a hero (two nurses have told me that).

Sometimes, I actually do forget that I'm battling a serious illness. It's hard to explain - because I'm reminded somehow every day that I have cancer. Maybe I'm used to cancer? That's weird, isn't it? The only thing that reminds me from time to time that I'm actually not well is when fatigue hits me, or I see/feel one of my scars (my port, for one). I guess in a way, it helps me to remain positive. I'm not in denial - in fact I do a lot to make sure that others know about cancer. I want people to know what my experiences are like, even if they're not pleasant.

I typed most of this before I actually had radiation. Today was a quick appointment, they seem to get faster once they're able to pinpoint the places they need to go. From setup to completion, it generally takes about 30-40 minutes now. Fatigue has hit me, now. My husband brought me a healthy wrap (pita with cabbage and other veggies and chicken) and a yummy mango lemonade after treatment. It was good to have something delicious.

Now, I'm very tired. I've been biking to and from work on most days, but generally find that it's difficult to ride after radiation treatment, so I don't. One more appointment to go!

CyberKnife #1 - A Trip Report

First CyberKnife appointment... Complete!

Truthfully, it wasn't that bad. The weirdest part is having this on your face:

Not mine, just an example!

This mask is tight and I'm not saying "Yo, this mask is TIGHT!" as in that it's cool. No, you will have little "grill marks" across your face for a while after it comes off. After an hour, it's kind of uncomfortable. The mask is screwed to the table, and you cannot move your face or head at all. They also made me a nice little cushion for the back of my head, so that helped. 

As of right now (about 1.5 hours post-radiation) I am tired. Walking up the stairs to my office afterwards was kind of tiring. I feel a little spaced out and dizzy if I stand up too much - but pretty much okay. 

I think I'll probably sleep well tonight, and not feel like doing a whole lot. I was able to eat when I got back to the office (spoiler alert: avocado was involved) and I'm not really nauseated at this point. I was told side effects can crop up in a day or so, but we'll see. 

The mixtape we made to listen to actually didn't work - it stopped playing after the second track... So I had to listen to some horrible opera - which was barely distinguishable over the buzz of the machine anyway. The CyberKnife was a little interesting, the "arm" of the machine moves around as it targets the various tumors. 

On that note, the detailed scans that they performed last week did find additional tumors. The initial scans last month found a total of four - one in the mid-brain (brain stem). The MRI/CT that they did last week takes finer slices (1mm, I think?) and they've located a total of 10. The doctor assured this does not mean the cancer has progressed further, but that the detailed scan was needed to make sure they are able to target EVERYTHING. I'm glad they're so thorough. 

More happy news, no weight gain from steroids. Avocados are the way and the light. Now though? I'm really jonesin' for strawberries. Who has strawberries? Teleport me some?

That's it for now! Go eat an avocado!

Radiation Anticipation

I couldn't sleep last night - I ended up waking up at 3:00 this morning but managed to burrito myself in a blanket until 3:30, at which point I set up camp on our couch with a couple of pillows, a blanket and Netflix. I ended up sleeping until around 6:00, drifting in and out of consciousness between episodes of Futurama. I woke up at 6:00 yesterday despite having taking a sleeping pill (Trazodone) and mini-binged on Say Yes to the Dress.

We had a pretty full weekend - we went to the Farmer's Market on Saturday and picked up a lot of my favorites (Cleveland Kraut, some yummy almond milk from Forty-One that I'm obsessed with, some more strawberries and a quart of blueberries) and a few other things. I made my husband a strawberry pie (as is tradition) for his belated birthday. Later in the evening we spent some time with friends - this was my favorite part of the day, by the way - and headed home late, because I'm a chatty girl.

Sunday was another early start for me (are we shocked now?) so I baked some blueberry muffins and quietly cleaned as my husband slept.

We visited another market in the afternoon on Sunday, and it was a beautiful and sunny afternoon. After the market on Sunday, we came home and I cooked a delicious carnitas dinner! By 8:30 I was exhausted - which might explain why I was wide awake so early today, but it's still probably to do with the steroids.

My participation in the clinical trial (chemotherapy) is on hold as I undergo radiation therapy. Because of this, I'm able to take Pepcid and other antacids that were off limits to me. If I need it, I can also take Zofran now. There are many drugs listed in the protocol for the trial that can cause dangerous arrhythmia, so it was/is important to be aware of those. Thankfully on the time or two I forgot, or didn't know about a particular medication I didn't have any issues, but there was a definite risk.

I'm starting to get a little anxious about the radiation. I guess in a way I'm thinking about how very un-ordinary it is to be doing this, even though a lot of what I do to treat my cancer seems very ordinary to me, anymore. Chemotherapy has been daily for months and months, it's as second nature as a vitamin to me. But yeah, tomorrow - I'll be strapped to a table for two hours in a plastic mesh mask getting beams of highly concentrated radiation shot into various spots in my brain in hopes to kill the tumors inside.

I'm mostly worried about how I'm going to feel afterwards.

I'm still on a never-ending quest for restful sleep. Reflux is getting better at night thanks to being propped up a little and Pepcid - There's minimal pain with the port site now (I lifted a bit too much the other day and it was throbbing for an hour) and it seems to be settling into place. My legs are weak and crampy from the steroids, but Gatorade and potassium tablets are helping that too. Honestly, I just want to sleep. I'll try when I get home this afternoon, but I'm not holding my breath! I have a prescription for Ambien, but I'm afraid I'll wake with that too - and crazy things happen with Ambien when you're half awake... I've experienced it. I say crazy things, at the very least.

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.

Radioactive

Today was the setup appointment for my CyberKnife sessions. I was told it would be a full day, but ended up leaving the hospital after only 3-4 hours. I met the nurse who I'd usually be dealing with on treatment days (she's wonderful) and we talked about the schedule. Treatment sessions will last about two hours each - there is a stereo in the chamber and I was told I can bring in any CDs I want. Time to make some mixtapes!

I got fitted for my mask, and had a CT scan and MRI. They do these scans at a finer detail to make sure they don't miss any little tumor "seeds" that they can target during sessions. The mask wasn't bad, the MRI was annoying... You do what you have to do. You carry on, or you don't. Those are the options, and I choose to carry on!

It was established that sessions would begin in July - but I've since gotten a phone call and radiation begins next Tuesday. I will likely have two consecutive sessions next week, two more the following week and then a fifth the following week. It's not exactly jam-packed. During radiation therapy, I will not take chemotherapy medication. I will not resume it for three days after radiation ends.

All in all, today wasn't that stressful but I'm still pretty tired. The weather decided to warm up and even our ground floor apartment isn't impervious to 90 degree heat and the humidity. It's gross, I feel slow and exhausted. I'm doing laundry (don't worry, I am not lifting anything heavy) and then plan to take an extremely cold shower.

I'm curious about how radiation will affect me. Most things I read say that side effects with CyberKnife are minimal and don't usually show up for weeks (as the tumors start to dissolve/die) if at all. I'm anxious for business as usual.

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. 

Avocado

I had a pretty emotionally draining day, and little of it had to directly do with cancer. It wasn't all good, but I'm trying to focus on what actually went well. I ended up taking a Xanax, which I have to do at rare times when I can't manage my anxiety.

I participated in a phone call today where I was able to share my story with some local political and healthcare personnel, in hopes to bring a fundraising event for lung cancer to Cleveland. There's still a lot of work to do and more phone calls to make, but I made a start today and I feel very accomplished for my tiny feat.

My favorite farm, Rittman - will have their berries at the market in the morning. I have to get up early so I can get them to make a strawberry pie for my husband's birthday. Later on, we'll hit the Cleveland Flea and hopefully see some friends and family in the process.

My in-laws are coming to Cleveland to visit us tomorrow and I think we'll have dinner - I am not sure what else we'll do but it will be good to see them!

I titled my post "Avocado" because I'm currently obsessed with avocado. I had it on a burger last night, I ate it at the restaurant we went to last week and I may (or may not) have eaten more for lunch today. I know there'll be a time where I'll get sick of it eventually but for now I'm going to ride that yummy green wave.

A Port in Girl

I just got home a little while ago from my minor surgeries.

To recap, I had a liver biopsy and a port. They could not do them simultaneously, so I went in and had my biopsy first (around 9:00) and recovered in that department until I could be called to the cancer center for my Medi-Port.

The biopsy was mostly uneventful, the worst of the pain being with the local anesthesia. I was kept very comfortable and all of the doctors were very nice. My parents came to visit me, and that was so important. I didn't realize how much I needed them until my mom came into my recovery room.

The port was a little more troubling to me, for some reason. They showed me what the port looked like and it wasn't at all like I'd imagined. It was/is much thicker but smaller. The pain meds were effective and all I really felt was tugging and pressure. Thanks to the anesthesia my blood pressure is kind of low and I'm very weak and woozy. Not sure I'll go in to work tomorrow - but I feel the pressure to go, because I don't want to lose any more leave time.

I love University Hospitals and the Seidman Cancer Center. Their staff members are always caring and so compassionate. I am so glad to be home, though! I took some pain medication and will spend the evening resting/relaxing.

Friday thoughts

Telling someone that doesn't know you that you have cancer is an interesting experience. The evolution of their facial expressions can be completely awful. The words "I'm so sorry" usually follow. I'm so used to it now, to the apologies and even to having cancer that all I know how to do, is fight.

Today we saw the Neurosurgeon. While we waited, I glanced over at Jeff and noticed he looked worried, so I asked him if he was - and he nodded yes. All I could do is assure him that it's going to be okay, because I am convinced that it will be.

Everything in life is okay, until it isn't. A lot of times, that is all we can ever know. Today, I am not afraid of the future. I cry, but most times it's out of gratitude and awe. I am moved every single day by the kindness of friends, family and total strangers.

My husband is the best of them all.

Tonight we're going to a rib cook-off, and I'm considering it a celebration. Insurance approved radiation therapy, and now we're going to wait for the call for the setup appointment, where they'll do scans and I'll get my radiation mask. I am assured it is highly attractive. Tomorrow, I will try and fix my bikes. One is too small for me, I would like to ask how much it would cost to make it fit me better.

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.

Look what I can do!!

This is my husband with me, at a break point in a social bike ride called Cleveland Slow Roll. Slow Roll is a weekly Monday night group bicycle ride. Started by Detroit Bike City Co-Founders Jason Hall and Mike MacKool back in 2010, Slow Roll has grown into Michigan's largest weekly bike ride and has expanded to 5 cities so far. Slow Roll is for everyone, all ages and types of bikes, with a slow pace that's geared to keep everyone together and safe.

A good friend of mine is the organizer of the Cleveland ride, and I try to make it when I can. The ride usually ends at a restaurant, and last night was no exception! We got crazy amounts of delicious soul food, but I'm just not as hungry. Have you ever wanted to tear into a plate of food with reckless abandon and NOT feel guilty about it later? Yeah, I want to do that. I still kind of want to do that. Not on a daily basis or anything, but I want to. I still drank Kool-Aid out of a giant mason jar, though. Pretty sure it had a full cup of sugar in it. I'm not sorry.

This is the first Slow Roll my husband tagged along for, and I know he already knows this but it really made my day for him to go with us. I feel like I'm predominantly a social rider (though I have done plenty of distance tours and even a few time trials) and he's not - so it was sort of a big deal to me for him to ride along. Riding a bicycle is a huge part of my life, and my marriage is also a huge part of my life - it is nice when the two come together.

I'm really impatient about starting treatment, I don't want to wait anymore. I feel a little weird for actually wanting to be radiated - but I'm anxious. Not having any cancer treatment right now feels like using a computer you KNOW is full of viruses. You could do something about it, but for some foolish reason you are not. I know there are procedures in place - steps that have to be taken. I know this. But a creeping fear sets in every time I feel myself wheeze a little when I take a breath.

Let's get moving, already.

This is why I don't write in my food blog anymore.

Holy crap, my appetite sucks lately.
Barely ate at lunch.
Drank half an iced coffee.
Ate one bratwurst at dinner (barely).
Trying to eat ice cream to balance it out (ha).

I wonder if they'll let me order off the kid's menu.