The Chemo Monster

Today I would like you introduce you to my liver. 

That's right, that's my dirty pig of a liver - gobbling up chemo but not really getting any better. Dirty piggy liver, it eats it up and...Nothing. I had a CT scan, and yesterday was the first day an oncologist would not feign a toothy grin. Truth be told, I appreciate that. Battling cancer isn't all sunshine and roses. Most anyone who pens a blog and says it's been easy or only tell you the good parts is hiding something - maybe for your sake, or maybe for theirs. 

My liver hasn't wanted to cooperate for a really long time - the best response I had was on Alectinib... And even then there was slight progression. When I stopped Alectinib there was a lot of progression and that was what led me to go to traditional chemo (which didn't work on the liver either). 

I'm numb right now, and I'm annoyed. I'm not mad at my doctor - he's doing everything he can. In a way he almost seemed as pissed off/confused as me. I also think he and my nurse expected me to burst into tears. Not going to happen. I had my cancer cry when I was diagnosed...I still get upset but I'm not going to get discouraged. 

Right now, I'm in a little pain. I don't know if it's because it's cold or if it's the cancer. I sent an email to my nurse. I hope to be on a new drug next week. Until then, I wish I could just sleep. I really, really want to see some improvement/control in my liver. Please let Zykadia work. 

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.

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.

Gripes

I really thought I skipped the aches and chills with this chemotherapy cycle, but I didn't. There's no sign of a fever, but the tiny hairs on my arms/legs feel like pins when they brush up against my bedsheets. It feels like I'm freezing, when in fact I'm wearing a sweater and pants (and socks!) while covered up in bed. It's kind of annoying, honestly.

I stayed home today because of the pain, and spent most of the day in bed with our cats. Tomorrow (I hope) will be better. In the meantime, I've taken pain meds and am relaxing in the living room.

So far, my appetite has been okay - I'm better off nibbling on things as the day goes on instead of having three meals. My husband made chili tonight and it was delicious - I think the spiciness really warmed me up. I feel less chilly now.

I really hate missing work, but I have to tell myself that this isn't the sniffles - it isn't some 24 hour "bug" that I have... It's a serious illness and I need to take care of myself. As obvious as that probably sounds, it's so hard to accept sometimes. I hope the chills stay away tomorrow.

Wigging OUT!

Unfortunately, my week-long getaway in upstate NY had to end. We got home this afternoon after splitting the 9+ hour ride home into two days (we stopped last night in Syracuse).

The drive out of the Adirondack park was pretty scary. At times, it rained very hard. The roads were mostly in good shape, but many lacked the little reflectors that we all probably take for granted most of the time. There were some curves/turns that didn't have reflectors on poles by the side of the road, and there were no street lights. We made it out, but it didn't get much better on Route 81! I was so glad when we finally stopped moving (in other words, arrived at our hotel)!!

We'd just enjoyed a dinner and celebration with a LOT of family members who drove/flew in to celebrate my Father-in-law's birthday. He really does a lot for us (and for the rest of his family) so it was really wonderful to have a day with so many loved ones that was all for him. It was really great to see people I hadn't seen in a couple of years (or more). It was sad that we had to leave so soon, but I'm back to work tomorrow. 

I was having quite a bit of pain in my left leg all week, but yesterday was the worst. Pain medication didn't touch it - but to be fair I only tried Advil, I did not want to take narcotics or muscle relaxers. I woke up today with significantly less pain, so that was nice. I can actually walk today without hesitation or limping. I've brought it up with my oncologist's nurse who thinks it could be anything from referred pain from bone mets, or just a muscle pull. 

This week I meet with my Radiation Oncologist to follow up on the CyberKnife treatment I had. We're not doing any scans, it's mostly just to discuss how I'm feeling, and to talk about any side effects I'm experiencing. 

My hair continues to thin, and it's getting to the point where it's annoying me. It sticks straight up most of the time, and it's very obviously extremely thin when I slick it down with something. Most people say it looks great, but I have a hard time believing it - I think it's mostly positive talk and that's great, but as I continue to pull away little bunches of strands whenever I touch my head - I tell myself the hair has got to go. 

I checked with my insurance rider to see if my plan covers wigs. Good news, it does! Bad news, there's only one networking provider and it seems that they only specialize in styles that pay tribute to 1970s power-butch lesbians. 

Rawr.

That's a fine thing to be, but the hair-do isn't my style at all. They only have 15 designs/styles and they are nearly identical. I looked elsewhere online and DAMN... Wigs are expensive! I'm not trying to emulate Beyonce, I don't need a lace front - but short of wearing a halloween novelty wig, I'm going to be out a few hundred bucks, at least. A friend of mine has offered to go wig shopping locally, where I am told I can find perfectly good options well under 100 dollars. 

Until then, I do not know that I am ready to rock the baldness - I still don't like scarves very much (I'm just not used to feeling them on my head, and they kind of itch) and there's one hat that I love, but it's not appropriate for all situations. I will continue my research!

That's all for now. I didn't even drive today but I'm exhausted (and getting sick, I'm afraid. I have a persistent sore throat). 

Get MOVING!

I know everyone has had an illness of some sort where it seems like it's never going to get better.

I've been experiencing CIPN or chemotherapy induced peripheral neuropathy for a few days now. It has made me slow and a little cranky, not going to lie. One leg has a perpetual "catch" in it, and my toes feel like blocks of ice in the morning. I really don't like to complain publicly (or at all) so I'll leave it at that, but it doesn't feel like it's ever going away.

One of the solutions is taking steroids, and as I am now almost entirely tapered off Dexamethasone, I don't know that I'm actually willing to go back on it, long term. I know that's stubborn, but it's not like I can't manage. If I felt like taking a steroid actually drastically improved my quality of life, I'd do it - but I'd end up with leg cramps and pain from the steroid, anyway.

We had a great date yesterday evening, I had a pretty good appetite and managed to eat some pretty tasty eel. It's called Una-ju or Unadon. Barbecued eel over rice. Delicious!!

Pretty close to what I had.
Source: Flickr

It's so important to keep moving, even if it's at a snail's pace - and keep DOING! It's so fun and liberating to go on a date and have a conversation in public at a restaurant. Making googly eyes at my husband from across the table still makes me smile - after almost eight years - I hope it never ever gets old! 

Do stuff, seriously. If you're a cancer patient (or someone just not feeling good) with a serious case of the ouches and mopes (like me, sort of) then go outside anyway, if you're able. Two days ago I just sat out on my front steps and BS'd with my mom on the phone for a half hour. I felt the sun on my face and the breeze, and it was awesome. 

I am so glad that many have said that I'm an inspiration to them, but it's times like these I don't feel like I deserve the designation. I've been so whiny lately I haven't really wanted to post a blog, because I knew I'd complain. The thing is, it's okay to be annoyed with the crazy stuff that chemotherapy and cancer do to you.

I want people to know about these things, because they're real and they happen to people and there is unpleasantness and a degree of suffering. I don't tell you about these things because I want you to feel bad for me, to me it's no different than you telling me how your day was. 

Today is moving day! (and I'm at work)

I'm anxious to go home (I have two of those now) and to see my family who has come in from out of town to help. We have a few friends pitching in as well and I'm glad, because there is a lot to do. We have a cleaning team going to the old place tomorrow and Tuesday, but I'm sure we'll both have plenty to do ourselves. I'm sleepy now, so it seems a nice cup of coffee is in order - maybe when I'm done at the office! 

Busy

It feels like I haven't written in a while, but I don't want to check how long it's been.

Today I taper even more off of the Dexamethasone, and am down to 2mg per day. My side effects are getting a little better, though I still wake up nightly with leg cramps. Clindamycin has helped the skin issues, somewhat. In addition to my legs getting cramps, my fingers sometimes lock up and ache. I'm trying to drink more water, but I really do not like water.

We're moving this week, today is the first day we can actually start moving things in to the new place. I'm a little sad to say we really haven't been packing much, and I haven't been much help. The lack of chemotherapy and the humid weather conditions have left me exhausted and short of breath. I am experiencing pain in my lung and liver area, but nothing constant or severe. I haven't been able to ride up the hill to our current (and future, for that matter) apartment in a couple of weeks because of muscle weakness, but I may try (On the hottest day in a while? Am I insane?) today.

Going through treatment and dealing with side effects has been a delicate balance of knowing my limitations and testing them. Sometimes you don't know if you can do something unless you try!

Chemotherapy starts Wednesday morning, and it can't get here fast enough. It is extremely frustrating to know that the spot on my liver grew exponentially in such a short time - all I want to do is kick this crap out of my body... Right now, I feel like I am doing absolutely nothing. I know that treatment is on the horizon, and that's why I'm excited and staying positive - but it's still frustrating.

Someone saw my legs off, please.

Let me preface this by saying two things. First, be warned that I am going to whine throughout this entire post. Secondly, you should know that I HATE FAMILY GUY.

Hate is a strong word, and a strong word is required for how I feel about Family Guy. I hate it.

But, this is pretty much me - yesterday and today.

Yeah, it's totally like that. (PS: I still hate Family Guy)

The Dexamethasone can cause muscle cramps/weakness anyway - but it can be worse as you're tapering off the medicine. I'm drinking Gatorade, taking potassium and magnesium and still waking with leg cramps. In addition, I'm experiencing muscle weakness. I'm told this is normal - it's just annoying because for the past day or so now, I feel like I just shuffle along like an old lady (sorry to all the old ladies I know...I think you're adorable but when I imagine how I must look as I'm shuffling along in the grocery store yesterday, I totally picture you.)

I wish I could be so lively.

Sometimes I feel bad for not taking pain medication, but then I'd be slow and groggy. I don't like narcotics. I worry about Advil/Tylenol affecting my liver and kidneys (doctors have said moderation is fine). The truth is that I simply do not like pain medications. I take a Flexeril at night in hopes that the pain in my legs will be better, but it doesn't seem to be working. I'm tapering the steroid per doctor instructions, I just have to hope it gets better as I continue to taper - and manage the pain as best as I can with, I don't know... Bananas?

To end on a positive note, there are lots of charity bike rides happening very soon for cancer research. One is Cleveland Clinic's VeloSano ride (this weekend), the Pan Ohio Hope Ride (end of the month) and Pelotonia (mid-August). Though every person has their own reason for doing the ride, I'm personally thankful for all of the people who are hopping on their bikes and hammering out some miles for a great cause.

Coming up next blog...