Les Symptômes Terribles

Ah, la vache!

Pour mon déjeuner, pêches tendues et du porridge de riz. Très sophistiquée, non?

Oui, non.

Yesterday I was pretty sick in the morning, which left me very hungry in the afternoon yet too gun-shy to actually eat anything, which made me feel even worse... Nausea and appetite loss really suck.

I got home from work and cooked up a steak in our cast iron skillet and wolfed it down. No issues, and I felt much better, for a while. I cooked dinner a few hours later but wasn't hungry. Part of that was likely because I had eaten just a few hours before, most of it was that I just didn't feel that great.

I decided to go to bed a little after that, and rest for awhile. I took Benadryl to help me sleep. One of our cats accidentally scratched me as I was playing with her, and I had a total meltdown. Yes, she drew blood and it hurt - but I was completely sobbing. I know it wasn't just because I had a cat scratch - I've had many "scratches" in the past years that have left me scarred and sore. This was minor, but I think I'd just had it. I'd been doing so well for a few days, it was defeating to have a crap day in the middle of nowhere. I'm over it now, for the most part - but the fact that I still feel weak and a little fragile is upsetting. I did quite a bit more walking (briskly, yay!) than I have in a while, and my hip and joints are suffering some, as a result. I'm waiting anxiously for my city to release the winter schedule for water aerobics so I can start that up again.

Today I managed to eat a bowl of cereal and not get sick, but I still didn't feel right. My head sort of hurts, and I'm (of course) tired. I brought leftovers from yesterday's dinner - locally made pierogi with sauerkraut and sauteed onions (yummy, minus onions) but I've not been brave enough to eat them yet. Instead, I am eating rice cereal (for babies) and strained peaches. They're easy on the stomach, but not as protein enriched as my doctors would probably like.

I got lab results back (at least, they were finally posted so I can access them). My hemoglobin and red blood cells are a little low, just below the normal threshold - they were evidently okay enough to continue treatment without a blood transfusion, but we'll see what happens next week. Thankfully, I am off treatment this week, perhaps that will give me some time to recover.

I am hoping to feel normal tomorrow, since we're visiting with family for Christmas. I need this time of year. Not for presents or anything like that, but it's just so warm and nice. It's really hard to be sad or mad at Christmas.

We went to a basketball game last week, and that was so fun! I bought a shirt and was as giddy as a tourist about it (even though our team lost). I hope we get to go to another game soon.

Happy Holidays to all of my readers, friends and family. I couldn't fight this battle without you. Love and caring are great medicines.

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.

There's no place like...

I'm prepping for a second berry pie right now, the bottom crust is in the oven, the berries are on the stovetop cooling, and the lattice top is unrolled and in the fridge still. I'll put it together and bake it soon.

I'm on my first vacation since I was diagnosed with cancer, and it's great! I've actually managed to sleep - a LOT - and have been feeling generally well rested. My husband participated in a triathlon on Monday and that was AWESOME! We're here for a little bit longer, then heading home.

I woke up this morning not feeling very well, though. Lots of knocking in my chest, nausea, and I was/am cold. I have obsessively (but discreetly - Hi Mom!) been taking my temperature all day and I've got no fever, but chills can be a part of chemotherapy. I took a Zofran and my other dailies and powered through it. Most food has looked awful to me all day long, and I managed to be nauseated most of the afternoon - but I'm okay. I ate enough, and the company I kept more than makes up for the icky stomach.

Next week will begin Cycle #2 of Carboplatin/Alimta/Avastin. This probably means that Sunday will be my worst (and whiny) day. I'm excited to beat the ever-loving shite out of my cancer, so naturally I am looking forward to next Friday.

I also miss my house, and my cats though. The knocking in my chest is (likely) my lung trying to open up more. My breathing is fine, and I've had no fevers since I finished the antibiotics for the unrelated infection last week. The sensation makes me cough, which makes me wheeze a little - and that always makes me nervous. That makes me want to run home, fast. In one particular coughing fit this afternoon I told my husband I wanted to go home, now. I don't feel that way now, but the anxiety still remains. Part of me is not comfortable with being as far away from my doctors/team as I am. My husband assures me that there are oncologists and a hospital nearby, but I don't know them and they don't know me.

The last time I spoke at length with a doctor who didn't know me, she told me I should be considering hospice (this was November, 2013). I was highly offended and her words sparked mental trauma I still fight with once in a while. That hospital stay was horrid, and traumatic in many ways. So while I'm somewhat comforted that there are medical professionals nearby if needed, I can't stop thinking of all the things they can (and probably would) say to me. I'm having a hard time thinking positive about that scenario.

There it is, just a little brain dump. I wouldn't be human if I didn't worry some.

I'm so glad to be where I am, though - and with my family. The combination of my surroundings and the people I'm with make this trip so very therapeutic. I wish I could stay longer - but also have the capability to teleport my doctors here if needed. The weather was dreary today and so I think that's part of the reason that *I* was dreary feeling. My family is pretty damn awesome, though. With them I can weather any storm.

Time to make that pie, now. If you're planning on heading over, it'll be done in an hour or so.

TTFN!

Musings of a 5:00AM Baker

I'm not even going to try and pretend like the past few days have been 100% sunshine, because they haven't. I haven't been sleeping, which translates to early morning baking/cooking and binge watching Say Yes to the Dress on Netflix. This morning's episode involves a young girl who is buying her dream wedding dress - she's in remission from Stage IV lung cancer. I am totally crying.

Extreme insomnia started a few days ago when I woke up at 5:30 and proceeded to make a strawberry pie before I went to work. Saturday I was up at 4:00 in the morning. Today, I woke up at 3:00, but was able to nap on the couch (listening to Spotify on earbuds) for a little while. I woke up again at 5.

More Say Yes to the Dress.
More baking - a beer bread using a local (Westlake, Ohio) beer.
More frustration. 

I have some jam with your name on it, bread.

I have sleeping pills - Trazodone - which is actually an anti-depressant... I guess it's working because while I'm not sleeping very much, I'm not terribly sad about it. I think it's time to ask the doctor for something else. I have Ambien, but I don't like it, and I've said why before. I've actually got some Benadryl and a lot of sleep aids are actually antihistamines, so it's worth a shot. Some have also suggested melatonin.

My sister-in-law flew in yesterday and we had such a good time. We got brunch, and then went swimming in Lake Erie. I got a little sunburned (I have tried nearly EVERY sunscreen and there's really only been one that works so far) but I feel okay. I'm not on the chemotherapy at this time, but I still seem to be highly sensitive to the sun. To be fair, it's only been a week since I stopped so it's very likely it's still in my system. Either way, sunscreen is very important! A good friend of mine just bought this and it's cheaper than the other stuff, I've also read very good reviews for it, so I'm ordering it today.

Last night my mother and father-in-law and cousins went to dinner. The in-laws and my husband and I will be headed to brunch in a little while. I expect I will drink a lot of coffee. They're going home afterwards. I might try to sleep, then. I love my family so much - it means a great deal to me that they're here. I served them the strawberry pie I made, and it was a hit!!

My next radiation appointment is Tuesday!

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.