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.

Un Poco de Todo

If this entry were a Jeopardy category, it'd be called Hodgepodge or Potpourri. I'm all over the place.

See that drawing, though? That's me. That's me last night, practicing to be some sort of human pretzel. I fell asleep in this position because I felt the least amount of pain this way. The illustration isn't wrong - I fell asleep with no covers on. I was roasting. The important part here, is that I'm smiling - and sleeping.

It's been about three weeks since I applied for the HSP-90 clinical trial, and there's been some drama in relation to the screening tests. I had to have a CT scan, an MRI, an eye exam and various lab tests. One of the lab tests they ran was for the pregnancy hormone, also known as HCG. A day after I have all the tests done, the Clinical Trials nurse calls me before I go into work. She asks, "Is there any way you could be pregnant?"

"Um, no?" I explain to her for various reasons. She tells me that my HCG level is elevated and that my test is positive. She tells me I'll have to have a repeat test, but assures me the level probably won't go up.

It goes up.

It goes up a third time. They tell me I have to consult an OB/Gyn to confirm I'm actually not pregnant. They offer no other explanation as to why this could be happening. I worry, panic, and think about how absolutely f*cked up it would be for a cancer patient with an IUD that wanted to have children and -tried- forever and ever to actually be pregnant. I call my doctor and I proceed to freak out. I tell her the levels the study nurse had told me (5.2/6.4/7.6) and she laughs a little, and explains those numbers wouldn't coincide with a pregnancy - that there's likely another reason for it.

Super-Gyn runs an additional test and determines that the HCG is coming from my pituitary gland, not my uterus. Which means...

Truthfully, this blows my tiny mind a little bit. Not because I can't have children now - I've made my peace with that and have decided that being able to  just survive would be AWESOME - but because I'm 36 years old and I'm going through the "Change 'o Life". It's funny and weird, but it is what it is. This is happening thanks to the chemotherapy treatments I started in the summer. 

If you're curious about pituitary HCG and peri-menopause, here's a science-y article on the subject. 

Needless to say, Super-Gyn sent a letter to the oncology department at the "other" hospital (which I don't like at ALL by the way, sorry) assuring them I am not pregnant. I think she even used all caps, at one point. 

My doctor at my "home" hospital really went to bat for me - and they always have. I'm not thrilled with going to another hospital for this trial... Not in the slightest. I miss my team, my doctors/nurses. I'd like to think they miss me. I don't feel like the folks at the new place give a damn about me as a person, but maybe I'll at least give them some good data. We'll see.

The reason for the first illustration of me sleeping in a weird way is because of some terrible pain I've been having. My left hip has been hurting a lot, which has been causing referred pain elsewhere, and some mobility issues. I can't really stand still for very long (showering was hell today). I know it's temporary but I seriously forget what "no pain" feels like. I miss

Christmas is coming up, and I really want to dive in. I want to put pine garland in the house, put up a tree soon... Bake cookies, the works. Hopefully my husband is down with this idea, because I really want to live it up this year. Did I mention that my husband is great? Last night he came to lay down next to me and we watched a TV show together. Every once in a while he'd rub my shoulder or hold my hand. Seriously, it was the the best thing ever.

Being with him is the best medicine/therapy, sometimes.

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!