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!

Maybe We're Crazy...

It's amazing the crazy things you'll do when you have to.

Sometimes when I'm sitting on my bed giving myself a Lovenox (blood thinner) shot I laugh to myself and think, "Who on earth would willingly stab themselves in the stomach with a needle?" but I do it anyway, because I have to.

I've had people ask me "Why on earth would you want to do chemotherapy? That stuff is POISON! Here, eat lemons instead." Wait, seriously? I mean, it's not like I *enjoy* chemotherapy - does anyone? I seriously don't see anything like this happening

This never happens.

...But you do what you have to do. Sometime it's unpleasant -  but that's the reality. There's science behind its efficacy, there's no science to your lemon juice enemas.
If there's one thing I've learned, is that you really need to communicate with your doctors. Anyone I've worked with has always had a "Help me help YOU" mentality. You don't feel well? Tell them. Some weird side effect? Tell them. ASK QUESTIONS. This is basic, but I've know plenty of people who would soon rather not go to the doctor at all, or wait until whatever they're going through is REALLY bad, or trust the advice of their doctor implicitly - no questions asked. I'm not saying doctors are bad, but you really ought to know about what they're doing for you/to you or prescribing for you and why. Don't gamble with your health!!

C'mon, clean bill of health...Aaaaaand, STOP!

An office co-pay costs a LOT less than a trip to the ER, or an inpatient stay. Do not ignore your body, because it'll tell you something's up - more often than not. I've said it before, if you don't have a Primary Care Physician, you need to get one. Mine truthfully saved my life. I may have cancer, but she found a blood clot in my leg that could have easily caused a heart attack or stroke. I'm grateful that I had a physician to assess me before it was too late.

I had my third round of chemotherapy in the clinical trial yesterday, and I have to say I feel pretty good. My legs are sore, but the previous two days I did more walking than I've done in a LONG time. Pain management is key, honestly. It took me a year, and multiple "Don't be a hero!" speeches from various nurses to realize it. My oncologist actually had the best words for me, and they were basically that if my pain is getting in the way of doing basic/everyday tasks, I'm not controlling it properly. I'd have to honestly say that was the very moment I started staying on top of my medication (with a couple of slip-ups, sorry doc).

I was given Benadryl for one of my pre meds, and it's wonderful. It helps to prevent allergic reactions and it has the added bonus of making you sleepy. My husband came to visit and I was evidently snoring through most of his visit. When I got home, I slept and then slept some more. The only gripe I've had is that in the past two weeks I get leg aches about an hour or two after I get home. Yes, I mentioned this to my nurse!

I was well enough last night to cook dinner for three people and I actually ate it all. I gained the four pounds back that I'd lost last week from being so sick - I suppose that's good? Now is not the time to diet, I know.

I'm looking forward to Christmas, especially if I keep feeling the way I do now. The worst thing I've got going for me now is fatigue, and that's been pretty common any time I've been in treatment. It's okay, I still go places and am as social as I can be, but some situations are still overwhelming. I have to sit down a bit, and got a little sore when I was standing in the kitchen for a long time - but it's easy to fix... Just sit down. Duh...

For the record, I still dislike Chipotle (though calorie-wise that's probably a good thing) and ice cream. Ice cream!? Blasphemy!! How could you, body?! No fair. No fair at all. I loved ice cream, and now it's just...Meh.

I think I'm experiencing my first real bout of chemo brain, though - and it's kind of funny! I haven't forgotten anything terribly crucial, more or less which exams people are taking at work and what day it is. Not a big deal.

Tonight I'll hopefully be able to bake some cookies, and attend a holiday party for a friend of mine. I hope I'm not too tired!

Down With The Sickness

Hey there.

I haven't posted much because there hasn't been much to say, really. We're 75% unpacked in our new apartment and we absolutely LOVE the new place. I can't wait till it's all put together, it will be great. If I feel  up to it, I may hang curtains tonight.

I've been fighting fevers at night for the past two days, last night getting up to 100.4. We called the after hours doctor, but they never called us back. This is the second time I've left a message there and not been called back. I'm trying not to be angry about it - my own oncologist called me back this morning and spoke to me, so that's good.

I have an infection, and they're giving me Cipro to take care of it. That explains the fevers and general malaise. I still have achy legs from time to time, but have been biking to work and it seems that during the rides I am without pain (what better reason to ride more?). I stick my phone on the outside of my mesh pannier and put music on. It makes the ride a little more fun but it's not loud enough - maybe I'll get a bike speaker  - hey.. that one is also a headlight and it has a siren. I know what my next purchase will be...

n+1

Kidding - that's totally not the life for me. I do remember a few months ago when I said I'd buy a new bike once I beat cancer... I felt so close to the "end" back then - only to be told about the brain mets a little later. What a drag. I'm still going to buy myself a bike when this is all over... It's just going to be a much nicer bike than I'd originally planned on.

My appetite has been terrible lately. Today I basically made myself eat a muffin from Einstein's, and I drank a Boost. I think I'm actually hungry now, but I'm honestly not sure. I could go home and look at food and just think, "Nope." and not eat.

It's not that I don't know I should, or that I really need to eat something - I'm just not interested. Boost/Ensure is wonderful stuff for these sorts of situations, but they're no replacement for a nice hamburger! I wish that strawberries were still in season, I'd like to think I would eat those all the time.

Next week, I get a little break before the next round. I'm going to be able to relax some, and (hopefully) forget about what ails me, if only for a little while. Hopefully the leg cramps have fully stopped by next week. I'm down to about one cramp a night, and I've actually been able to sleep till 7 in the morning. It feels like sleeping in, though I know it isn't.

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!

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.

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.

Streams of consciousness

All I feel like doing is being lazy. 

Yesterday was one of the most tiring days I can remember having in a while - despite most of the day being spent laying down. I didn't really sleep until I was just too exhausted to stay awake anymore. Today my head has been pounding and I've been feeling flushed and tired. I probably should have stayed home, but was worried about being bored. 

Even today I am still just so tired. My vision is fuzzy because my eyes are tired. I have such a comfortable set-up in the bedroom right now, so that's great. 

Using my arm (on the side where the port is) is a little tricky - I can't lift more than 10 pounds for a week, and even doing things like reaching up and opening doors is a little painful. I have things I'd like to do, but I can't right now because of physical limitations. It's very frustrating to feel so useless. I know it's not my fault - I'm realistic about that but it's annoying. 

I'm working on some pretty serious prospects for lung cancer awareness and advocacy here in Cleveland. I hope that what I'm able to accomplish will make waves through the community and touch a lot of lives. I have some meetings to attend (via phone) with both local and some national interests to see how we can work together. Though I know my personal involvement will be very tiny in the scheme of things, I feel very happy to know that I am trying to make a difference and I'm going to be educating people. I hope that the community rallies around the cause and gets a better understanding of the hard fight that is lung cancer. 

I don't remember if I said this yesterday or not but the show Gold Rush is so, so bad. How the main guy hasn't disappeared - buried under  feet of permafrost is beyond me. I cannot. Tear. Away. My sides hurt.

The company that provided my oxygen last year claims they've tried to reach me for weeks and has sent me a bill for 5500 dollars for products I have not needed to use in months. At one point they sent a man to intimidate me to keep the oxygen, saying that if I refused it that my oncologist would be unlikely to prescribe me oxygen again if I needed it - since I was basically going against their orders.

I didn't buy their bullshit, but I bet a lot of people do - and that scares me. The things that healthcare providers tell you are NOT absolute. You can and you should ask questions, and you do not have to agree with the things they ask you to do or suggest you do. When you're being asked to take a drug, have a procedure or a change in your treatment you really need to know what it is you're doing and WHY.

The good news is that they're coming to get their machinery and tanks. I will never use that company again. Hopefully I never need supplemental oxygen again but I know who I'm NOT using if I do. 

I had an ER doctor tell me that my lung disease had spread extensively and that there was no shame in considering hospice at this point (in November). I've never really wished to hit someone in earnest before that day - I sort of hope I never see her again, because she will (at the very least) get an earful from me.

Another tangent? The new tattoo looks so good. 

This post got a little random, my mental fatigue is showing. Tomorrow is another day!

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.

Hey, Ellen...

Since I was diagnosed with lung cancer back in August of 2013, I've wanted to share my story with the world. I quickly found out that lung cancer gets the short end of the stick when it comes to research funding and awareness. Lungs can't be made cute or sexy, the awareness ribbon is white - it's hard to market... Not like breast cancer, I get it. Yeah, I'm kind of bitter about it. Can't be helped.

Am I on to something? Call me, Sanrio!

In 2012, just over 314 million dollars was spent by the National Cancer Institute for lung cancer. Twice as much money was poured into breast cancer research despite the fact that lung cancer is the U.S.’s top cancer killer, claiming approximately 160,000 lives per year. It is a devastating disease that can afflict anyone, regardless of smoking history, gender, or ethnicity. One in 14 people will be diagnosed with lung cancer, and it  kills more people than colorectal, breast and pancreatic cancers combined. (Source: Lungevity, Cancer.gov)

So let's try and level the playing field, shall we? Lung cancer is often found by sheer luck. They found mine because I'd complained of a pain in my calf, which ended up being a blood clot in my leg (that I rode a 150 mile, two-day bicycle tour on). The hospital performed a CT scan of my lungs to check for clots and found "too many to count" along with an "unknown mass" on my right lung. If you're reading this and you have lung cancer, feel free to share your story about how it was discovered for you.

In my case, most doctors probably would never have considered a relatively healthy, active and non-smoking individual to have lung cancer. Lung cancer doesn't really have too many symptoms in the early stages, so you don't start seeing signs until it's more advanced.

A lot of times, as I'm sitting in a doctor's office, laying in an MRI tube or just standing in the shower I think to myself... "Is this really my life?" and it's not even in a melancholy way - it's just that you never, ever imagine that it could happen to you. The reality is, this can happen to anyone. As easy as it is for some to dismiss lung cancer as a smoker's disease - it's truthfully not. The very air you are exposed to on your bike, in your car - anywhere at all, can raise your risk for lung cancer. But you don't stop going outside, you don't hold your breath until you collapse, you must keep living...

But we need to understand lung cancer better, and we need to research ways to find out how to cure it. If it really kills upwards of 160,000 annually - which would basically be as if you wiped out the entire population of Pasadena, California every single year... Isn't it time to take notice? I'm asking all of you - please, please do not wait for a friend or family member to get cancer before you start caring about it. Lung cancer isn't sexy, there's no way to make it more fun or pretty to make it more marketable. I'm jealous that the breast cancer awareness movement has that going for it. Breasts can be sexy. Pink is a darling of a color. Boobies, ta-tas... Call them whatever, just stick it on a mug with a pretty font and people will buy it.

If it will get you to donate money for lung cancer research, I'll make you a t-shirt. I'll even sell it to you for a fair price. I won't profit a dime, I just want the money to go to where it needs to be. I'll make buttons. Whatever it takes.

Ellen DeGeneres, I love your show and I love the compassion you show to your guests. You seem to be such a genuinely kind person, which is why I'm reaching out to you here and on Twitter. I want people to know that lung cancer is very real among people who are young, active, and otherwise perfectly healthy. I want people to know that however you came to have cancer, it doesn't matter. You deserve love. You deserve a cure, and you deserve a life. You have the gift of a large audience who loves you and will listen, I want that podium just for a day - just for 10 minutes, to be able to tell people how important this is to me.

Please, let me share your spotlight.

#Cheer4Cara

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.

Welcome to my world.

Here I am.

I kept a journal at Caring Bridge from close to the time of my initial diagnosis, but their format has become cumbersome and tiring to keep up with, so I'm switching to Blogger. For those that are first-timers to my world of cancer, I was diagnosed with ALK+ Adenocarcinoma of the lung (NSCLC - or non small cell lung cancer). The ALK diagnosis was fortunate, in a way... I was able to receive treatment via oral chemotherapy that was targeted toward that particular genetic mutation.

The first treatment, Crizotinib or Xalkori - left me randomly nauseated and with visual issues. My health did improve drastically in the first month or so, in spite of random vomiting... Yeah, that wasn't fun. Unfortunately Xalkori failed me after only 3 months of treatment. I found this out because I'd been having chest pains and shortness of breath - it turned out that I had over a liter of fluid around my heart. I spent 14 days in the hospital.

I was presented with the most recent option, a study for a 3rd generation ALK clinical trial being put on by Hoffmann-LaRoche. This drug was miraculous. I started to ride my bike again. I had minimal side effects. I felt great. Then, the headaches came about a week or so ago. I chalked them up to allergies, but thought I'd mention it at my upcoming oncologist's appointment. I had an MRI of my brain one day prior to that appointment. The MRI was just standard protocol for the study - recently added, however.


Two days ago I was informed by my oncologist that I have four tumors in my brain. My primary cancer is lung, but that's mostly stable at this point. There was new growth in my liver, and the bone metastases seemed stable.

When your brain is involved, the dynamic of your treatment changes quickly and dramatically. Instantly, my participation in the clinical trial I'd been doing, was stopped. The Clinical Trials Nurse spoke with the study manager and was told that since the radiation treatment I will inevitably have is not palliative and instead is an effort to eradicate the cancer in my brain, I cannot receive this treatment in conjunction with the study.

Palliative care can be given in conjunction to cancer treatment. I think there's a stigma associated with the word 'palliative' because when I asked most people what they thought of when they heard the word - they said it made them think of hospice. So, palliative radiation would be given to alleviate pain in a given area - though the goal of that radiation may not be to cure the cancer altogether.

I'm meeting with a surgeon on Monday to discuss a liver biopsy. They want to know if the tumor mutated beyond the initial ALK mutation. They'll try to get a good enough sample to send to Foundation Medicine and try to understand why the clinical trial didn't work out so well for me. I'll also be getting a B-12 injection.. Later on in the week I will have a needle biopsy of my liver, and will also likely have a port installed for future chemotherapy.

I will meet with a neurosurgeon on Friday to discuss radiation therapy and devise a treatment plan. I'm just anxious to move on. Even if this treatment makes me weak/sick or bald - I don't mind it... I just want this cancer to be gone from my body.