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.

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!

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.

Move over, Movember.

I'm not going to grow a beard for "No Shave November". I don't think I could if I tried, really. Steroids gave me peach fuzz, that's it.

For those that don't know, The Movember Foundation is the leading global organization committed to changing the face of men’s health.

The Movember community has raised $559 million to date and funded over 800 programs in 21 countries. This work is saving and improving the lives of men affected by prostate cancer, testicular cancer and mental health problems.

That being said...

November may be a lot of things to a lot of people, but to me it's Lung Cancer Awareness Month. You can't masculinize or feminize lung cancer - though 1 in 13 men will get it at some point in their life, and 1 in 16 women will get lung cancer in their lifetime.

In 2014 alone, there have been about 224,210 new cases of lung cancer (both small cell and non-small cell), and about 159,260 have died from lung cancer this year. (source: cancer.org)


While the risk is higher for smokers, lung cancer is NOT a smoker's disease and shouldn't be dismissed as such. Just because you may engage in an activity that is a risk factor for lung cancer doesn't mean you will ever get it, however those who lead a perfectly healthy life are also at risk.

If you breathe, you can get lung cancer. 

That's why asking a person "Did you smoke?" is probably the most insensitive thing you could ask a lung cancer patient. The only person that should ask that question is their oncologist. Even if an individual smoked, you have no way of knowing that it's what caused their lung cancer.

...Even if it did, would you say a smoker with lung cancer is any less deserving of care or treatment than someone who never smoked?

We need to focus less on the stigmas of lung cancer, and focus more on understanding the disease so that scientists and doctors can find a cure. Funding research is the key to unlocking the secrets of cancer.

The government doesn't seem all that concerned with funding lung cancer research, though it kills more people than breast, colorectal and pancreatic cancers combined. (Source: LUNGevity)


Most of us pick our battles. I don't have a choice but to fight.

It's up to all of us to put lung cancer in the spotlight - it's already on a pedestal:

Source: Lung.org

Visit resources like LUNGevity, the American Lung Association and the American Cancer Society for ways you can help fund research. You can also visit the websites of local cancer centers for volunteer opportunities and ways to donate funds directly to the centers. 

There are often bike rides, 5k races/walks and other events that take place throughout the year nationwide, check to see if there's a lung cancer event near you. 

High There

I'm sitting in my office waiting for my husband to pick me up from work. Had I known I was going to finish as early as I did, I probably would have found some money for the bus and gone home that way. It's been two hours now, waiting.

Out of nowhere, a scent wafted through my office that smelled like an operating room. It lingered for a few minutes. I was not a fan. Ouchy memories.

I'm pretty anxious about chemo this time. I put it off for a few days because of the schedule at work this week, so I'm not doing it until next Tuesday. I also haven't heard about the PET scan I had this past Monday, so I guess I'm anxious about that too. My assumption is that if anything had been terribly wrong or there was significant (negative) change I'd have gotten a phone call. Who knows?

I don't think I posted this in my blog, but it's been all over Facebook and Twitter - I had an MRI (brain) a couple of weeks back and was told that the largest tumor, the one that is on my brain stem - is totally gone. It was actually a little surreal how the Radiation Oncologist told me, he said it in passing as if it was nothing. It's not nothing... This is a HUGE deal! Oh well.

I got Marinol for nausea and appetite, I chose it over Emend (which was 60 dollars for three pills, Marinol was 15 dollars for 30 pills). It actually worked really well the first few times I took it - I managed to eat an entire plate of food which was not a common occurrence the previous week or two. I took it over the weekend when I was on the way to dinner with family (so I would want to eat) and again the following morning. Dosage says to take it every six hours, but after an hour or two on Sunday I was sitting in the car (not driving, before you ask) and suddenly...

I was actually high/stoned. It was not happy or pleasant, and I slept most of the two hour drive home because I could not deal with how weird I felt. My only theory is that it had been about 12 hours since my previous dose and it hadn't fully metabolized in my system. Needless to say, I'm actually afraid to take it again because the experience was so unpleasant. I'm refilling my Zofran tonight, so that's good.

There isn't much else going on. I'm sleeping well, I'm pretty happy... The pain in my left leg has diminished immensely and I'm actually walking normally most of the time (unless I've been sitting for a long time). I bought some new shoes which are also amazing... And I also think that helps my feet/walking. I'm anxious to feel even better so I can start walking around the neighborhood.

That's all, for now. I went to Amish country but I'll talk about that another time.

I have a lot to say, apparently.

Sorry, this got kind of long.

I hung up my cleats for the season (Did I even put them on? Can't recall.) effective last Friday. We did a short bike ride of about 4 miles last Friday evening and while I felt fine at the end, the pain in my leg turned up a few notches and I was in agony for the weekend.

I had chemotherapy on Thursday (10/2) and am working today. I'd kind of hoped any stiffness or pain would hold off until tomorrow, but it has started already. It was interesting - for most of Thursday (after chemo) and Friday, I was pretty much totally pain free. I thought it was the steroids, but now I'm thinking it was the heated chair I was in for treatment on Thursday afternoon.

Tonight there's a party for the cycling team I rode for during the National Bike Challenge. I rode 248 miles over 58 days this summer. While I am in awe of those of my friends whose own numbers were in the thousands of miles, I'm pretty damn proud to have been able to get on a bike and ride at all. Unfortunately, my health did not allow me to ride more than I did, but that's okay.

That's not to say it hasn't been hard not to ride - physical limitations aside, it hurts me not to ride mentally. There's a Critical Mass ride? I want to go. I want to be there with my friends. I can't. Team ride? Same thing. I feel like I'm letting people down, and I don't know why. It's hard for me to put my health first, sometimes.

So anyway yeah, this party. My leg is so stiff right now, it's crazy. If I make it to this shindig I will warn you now - I'm not getting up once I sit down. I apologize in advance. Right now, I have to endure about a split second of excruciating pain every time I get up. Then, I can kind of walk. So if I wince, please don't panic. I'll be able to take some pain meds too - I'm a little less worried about being looped up at a party than I am about being looped at work.

My oncologist informed me that since my previous labs on 9/18, that my hemoglobin was low (it went from 10.6 to 8.2. I am to watch for shortness of breath and other symptoms, and labs will be re-drawn next week. If my hemoglobin drops again, I'll need a blood transfusion. I also have an MRI and a consult with Radiation Oncology to discuss how the CyberKnife treatments worked, and what my next step would be. Think happy, tumor melting thoughts okay?

The weather has turned cold, and I mean drastically. Yesterday it was in the 70s. Now, it's in the 40s. This could also be contributing to my "old lady hobble" as I like to call it. I feel kind of like hiding under the covers, but that's boring. Less than an hour to go at work, and then I can rest for a while.

After this cycle ends, I will have a PET scan to see where the cancer is active, or if it's active. A CT scan will show spots where cancer has been active, but will not display current activity. There will likely always be spots, even if the cancer goes completely away in an area - it's kind of like a scar. Then, I will have one more round of my current treatment, and then I will begin some form of maintenance therapy in hopes to continue controlling the cancer.

They found another mutation but it's not serious. I will update later.