Strictly Speaking

Originally drafted March 2nd, 2014. Redrafted, edited, obliterated, and corrected no fewer than 68 times since. 

The side effect I’m about to share with you is something that may be temporary or permanent. We don’t know whether it is an effect of medication, disease progression, or both. Therefore it is important that we all (YOU) remain calm and not jump to conclusions on what this means for my future: short and long-term.

I’ve lost and continue to lose varying degrees of muscle coordination and strength on the left side of my body. So far it has affected my left leg, arm, hand, foot, fingers, and toes.
I lost functionality gradually over the past two months. And though it will be more melodramatic than I wish, I feel the need to document many current limitations:

Legs/Standing: I can no longer climb my interior stairs. (I’ve tried every possible way: one step at a time, both hands on the handrail, seated…) Standing is something to be done very deliberately and very carefully.

Arms: Dressing and undressing was already getting more frustrating, but I try to write off things to changes in daily routines. Then two weeks ago we went to a great concert. Seth and I thought I would be okay being near the handicapped seating; needing to constantly stand so other patrons could pass stressed my body too much, and before long, I was just slinging myself to and from the railing.

Before that, we were only one song in when I realized I couldn’t clap. Unbelievable. It was a real “aha!” moment, in a very bad way. I don’t go around looking for problems. It’s only after they’ve spit in my face day after day, week after week, that I finally realize that a pattern exists.

Hands/Fingers: These are, by far, the worst. Most days I cannot write. I cannot text. I cannot sign my name. I struggle to perform basic functions on my iPad and iPhone. I cannot stack food on my fork to eat my salad. I’m a bit more successful with a spoon/chili when I don’t drop the food before finding my mouth. It’s not simply lack of coordination, either. When I get close to touching a specific point, picking up a small object, or trying to grasp an item, my left-hand and digits shake uncontrollably.

What do I need now?
1. A chairlift so I can get to my shower!! Insurance won’t pay for one so I’m going to open the phone book and start shopping. I need to get one put in ASAP; used ones seem to start around $2,000, so I’ll be in Love Fountain to both bathe and collect funds during upcoming, warmer days. That’s multipurpose!

2. To quit bitching and keep typing like a newbie. A better voice-processor for iPhone 5 doesn’t seem to exist, so I’m trying to just type faster with my right (and only one) thumb. If there was a better (even paid option) for iPhone5 voice processing, I would gladly try it. Please let me know if you have a suggestion by replying to this post!

Either way, with this new disability and painful inter-cranial pressure changes (more on that in another two weeks?), life seems to have become only one struggle/complaint after another. Many things make me very sad or embarrassed. I struggle to sleep more than an hour or two at a time during the day or night, drugs or not. I don’t want to be seen as the person who is sad, tired, and unhappy. I’m working with my doctors to find the right meds so I can feel happy and enjoy the time I’m trying so hard to preserve!

I do just want to thank again everyone who has helped with my fundraiser and Frog List since the beginning. My happiest times are spent with Seth, my mom, and my animals. It’s just wonderful since we moved my mom and the animals to be close to me! That really was and is the most important thing for me, to have my loved ones as close as possible.

Post Production

I’m pleased to report that I’m feeling human once again.

Last Tuesday I had my third dose of Camptosar (irinotecan) chemotherapy. It reminded me why some drugs are given on a “three weeks on, one week off” schedule. The body needs that fourth week to detox before you can add more poison. This is my best guess since each week it took me longer to bounce back than the week before.

In addition to making me feel like crap, this line of treatment has really impaired my blog post production.

Sometimes I think I have no more to contribute to the world of blogging. I’m nearing my two year cancerversary (diagnosis anniversary), and I wonder if I’ve shared everything there is to tell about lung cancer and the impact it has had on my life.

Treatment side effects stopped being unique long ago: fatigue, flu-like symptoms, and abdominal and back pain. Whether it’s a chemo drug decades old or the newest clinical trial for ALK+ tumors, there’s no doubt that I sound like a broken record.

I suppose I’m afraid of getting stale. I want this blog to be insightful and not just a place to bitch and moan. (I use Twitter for that!)

Another Bridge Crossed

No matter how hard I try, I find it impossible to craft a positive post; or, as I often do, spin a note of hope or promise from what I write. I will return you to your previously scheduled, positive programming once I’m feeling a little better.

Truthfully, I’m feeling very sick: radiation poisoning, I suppose. It’s so bad that I’ve decided to restart the steroids (as my doctor gave me carte blanche to do) in hope that it will tame some of these symptoms.

This past Friday (August 16) was my last session of whole brain radiation (WBR) treatment. And surprisingly, it was the hardest.

At first glance, that seems illogical. I should have been relieved to put this behind me. I should have been glad that I no longer had to participate in such a self-destructive, daily activity. And for both of those things, I was (and still am) thankful. Yet that last day was more upsetting than any of the others.

Perhaps I was concerned whether or not I had enough radiation for it to be successful. Maybe I didn’t like the the pressure to ring the cancer center’s bell which would indicate I was done with treatment. (Clearly, I didn’t.)

But it wasn’t either of those.

This was the end of yet another treatment. Number six, to be exact. Here’s a refresher: 1) Xalkori (crizotinib), 2) Alimta/Carboplatin/Avastin (chemo), 3) Gemzar (chemo), 4) LDK378 (clinical trial), 5) CyberKnife radiation, and 6) whole brain radiation. The first four were to treat my lungs and the last two, my brain.

With each treatment, a clip of ammo is emptied, a bridge is crossed and burned. Slowly, I am being forced through a labyrinth which will result in the same dead end (pun intended) no matter which path I take. So completing a treatment is bound to be at least a little depressing, even when the treatment itself was terrible.

There is one exception to the above, and that is CyberKnife. This is a well I can visit one more time, according to my oncologists. In fact, that’s their master plan. For any brain tumors that continue to grow or sprout anew, I will receive this focused, high-dose radiation. And if my “brain lint” doesn’t respond to WBR, a chemotherapy drug specific to it is in the holster. (This assumes the brain is more aggressive than the lungs, and I don’t know if that is true.)

For now, we wait and see. In the best case scenario, my MRI in late September and PET scan shortly after will look great, and I will have a treatment-free Autumn!

There are no pro-active measures to take. Life is to be enjoyed as much (and as expeditiously) as possible. Now is not the time to hold back. Now is the time to live.

Pity Party

You are cordially invited to my pity party!

Who: me, myself, and I.

When: the wee hours of Wednesday morning -until- I fall asleep.

Where: in bed and blog.

Despite a weekend break, LDK378 continues to kick my ass. The daytime on Tuesday was better than Monday. But I awoke from an afternoon nap feeling poor.

Most evenings I try to wait until 9pm or so before I take something with THC. Saturday was an exception; I had an afternoon onset so severe that I thought something burst!

It was weird feeling so intoxicated during the day. I’m sure, like anything else, you grow accustom to the feeling. But I really don’t want to. Being high just isn’t “my thing.” It’s okay. But given a choice, I would prefer to be sober and pain-free!

One reason this stint is notably crappy is that the abdominal pain comes and goes frequently throughout the day. But my want to not feel drugged out all day must be greater than my need for pain relief. Most days, that is. Saturday was clearly the exception.

My preliminary hypothesis is as follows. I think that I have been tricking my body by raising and lowering the amount of LDK in my system from day to day. I have done this by taking a 2-5 day break from the drug when I feel toxicity intensifying.

But what if my body got ‘angry’ because I was sending it on this LDK roller coaster? And what if, in response, it decided to keep more LDK in the bloodstream than it normally would, preparing for the imminent drop? That would mean my LDK level would remain elevated, even several days after discontinuing treatment.

Again, it’s a preliminary theory with no medical basis and lots of holes. But it would explain why my last few days have been crummy.

I return to Fox Chase this Thursday for the beginning of Cycle 10. (I’ve been on this drug for 27 weeks!) My plan is to complete that in order to have a meaningful CT image on June 24. Then we’ll weigh side effects vs. scan results and see if there will be a Cycle 11.

Thank you for dropping in on my pity party. I’ll only be here until I fall asleep. I’m planning for a better tomorrow.

My May

It occurs to me that some time has passed since I’ve provided a good, old-fashioned cancer update. Here’s the latest:

I’ve been taking a 300mg dose of LDK378 for 7 weeks (2+ cycles). This dose is below the trial minimum but was approved by Novartis. I had a CT scan on May 13. Compared to the last scan, my cancer is stable. Yay!

Granted, this is the first time, since starting the trial, where improvement wasn’t noted. It’s not surprising or alarming, though. In addition to a very low dose, I have taken days off, as needed, to control my side effects. (This post explains that process.)

I’m nearing what’s been documented as the mean duration of response for this drug. In other words, the average patient stops seeing improvement or stability at 7.5 months. I am VERY happy to have stability right now on LDK378.

My side effects also remain the same. Taking a lower dose allows me to skip fewer days before I feel human again. But the side effects on 300mg are pretty much the same as 450mg.

I’ve found a new way to manage some of the side effects, though. Getting high helps – a lot. I’ve tried ingesting THC via baked goods, and it improved my very bad episodes by 90-95%. The pain doesn’t go away. But I can’t focus on it; my brain can’t even think about it for more than a second. So I will feel the muscle contractions involved with the cramping, but the pain only registers for a split second. It’s unbelievable.

Hearing my revelation, my NP prescribed Marinol for me to try. While the baked goods are magical, I’m at others’ mercy for them. So if synthetic THC worked, it would be a perfect solution.

I’ve tried it three times and only when I’ve had mild pain. It takes a very long time to kick-in (not so good for my sneak attack episodes), and to date, it hasn’t distracted me from the pain and discomfort. I get a teeny tiny bit high, but the pain is still there. I’m going to try some different doses before I give up on the stuff.

I was a proponent of legalizing medical marijuana long before I became ill. I really didn’t understand how it helped – or how much – but it seemed silly to keep people from something that could help them.

I was skeptical that it would help me. Other pain relievers didn’t even touch this type of pain. How could THC help more than opioids? Silly me. Now I feel like I’ve uncovered something nearly as miraculous as a cure for cancer itself. When I start feeling that tell-tale pain, I eat a baked good with THC. I usually feel so good I hang out on the sofa after needing to be in bed all day! On a few occasions, the analgesic effect has continued into the next day. Because of this, I was able to tolerate an extra-long stint of LDK.

I was on the drug for nine days straight. But even though I was managing through my bad episodes, the LDK toxicity continued to build. After just a day or two on the drug, I was back in bed 24/7 – except when I was high.

By day nine, I was very sick. I laid in bed, too miserable to do anything but quietly cry. Seth and I weighed the pros and cons of a trip to the hospital. I wasn’t dehydrated, and despite feeling like I had a fever of 103 F, the thermometer read normal. The hospital could do nothing to help me. Only time would eliminate LDK378 from my system.

I had improved quite a bit when I saw my NP two days later. She agreed there was probably nothing the hospital could have done to help me. At least I made the right choice – my own bed and bunny was far better than exposing myself to a lot of sick people.

That brings us to this week. I resumed LDK doses during the week and took off Friday, Satirday, and Sunday. I’m going to try a 5/2 (5 days on, 2 days off) schedule where I take off every Friday and Saturday with the hope of salvaging most of the weekend.

I know I’m still going to feel sick most of the time I’m on this drug. But if it’s not awful – AND I can get relief from the worst episodes AND I can have a few symptom free days each week – I’ll stay the course. It’s not like I have a good alternative, anyway.

That’s all for now. I have eight or more posts drafted in my iPhone notes folder; but they are just that, drafts. My words aren’t flowing as I expect them to as of late. Perhaps it’s just a writer’s funk I’m in.

I apologize to my friends who haven’t heard from me lately, too. I’ve been really caught up in this whole sick-from-LDK-and-cancer thing. But I do think of you all, fondly and quite often.

Cancer v. Toilet

You can help Jessica achieve her life’s goals via this safe, secure, online fundraiser!

When you’re in treatment for a serious illness you grow accustomed to sharing very personal things with total strangers. And while I once hesitated when someone asked about my bowel movements, I now volunteer the information.

That same desensitizing is what allows me to write this blog. I’m generally a private person. For example, I was never interested in having a Facebook account. When coworkers relentlessly insisted that I join, I created an account for Blossom and let them “friend” her.

Yet, here I am. I’ve decided to share some of the most intimate details of my life with anyone who cares to listen (or read). It was a difficult choice – to make this blog public – but I felt it had to be done. By writing, I’ve decided to sacrifice some privacy with the hope that it will help someone else. Please keep that in mind as I share with you another cancer adventure!

One Friday evening, I found myself writing to a complete stranger. I’ve had a problem for a few months now, and it was time to take drastic measures. First I introduced myself, including my lovely diagnosis. These are excerpts from the actual email:

While [LDK378] helps my cancer, it is making me very sick. It’s also creating some embarrassing bathroom issues.

You see, my toilet can’t handle my… movements.

[Seth] has to plunge and ‘power flush’ the toilet with hot water every single time I ‘go’. We’re a close couple, but it’s still so embarrassing for me and laborious for him.

We’ve had plumbers come out several times, and they never find any sort of clog. The plumbing was installed 10 years ago, so it’s not a pipe problem. And we have plenty of water pressure coming from the city. This is truly a toilet problem.

I concluded my letter by asking for help. I hoped that one of the companies with which she worked would be willing to sell me a really good toilet at cost. It was hard to ask for help, especially in such a situation, but we were desperate.

I received a response the next day: Saturday! And not only did my email get read, the woman wanted to help me! She vowed to speak with people “in the industry” to see what could be done.

Less than two weeks later, two gigantic boxes were delivered to my front porch. The outside of the boxes read “American Standard.”

‘No way!’ I thought. I tore open the packing slip like a kid opening a Christmas present. It was an American Standard Champion Pro toilet.

I grabbed my phone and iPad. A picture of the boxes and the text “TOILET!!” went to Seth as I quickly looked up the specs on my new toilet. On the American Standard website I read, “Using just 1.28 gallons, this trade-exclusive High Efficiency Toilet produces a faster, more powerful flush that can move a 70% larger mass than the industry norm.” SCORE!

Seth and I installed it on Saturday. We had never replaced a toilet, but the integrated tools made it fast and easy. In less than an hour I was staring at the most beautiful toilet I’ve ever seen.

Yes, beautiful. I didn’t know such a thing existed. The tank is curved, not rectangular like most. And there is trim where the bowl meets the floor.

The flush is quick, über-powerful, and quieter than my old toilet. The best part, though, is that it handles whatever I throw at it. No more plunging for Seth. No more embarrassment for me.

I hope whoever made this possible reads this post and knows how appreciative we are. Whether you have an issue or just need to replace your old toilet, I highly recommend the Champion series by American Standard. You won’t be disappointed!

Stress Test

It was 12pm on Tuesday.  Lying in bed, I felt a sense of relief wash over me.  I accomplished the one thing I had to do – take Gracie to the vet – and now I could relax.

This week I had appointments on Monday, Tuesday, Thursday, and Friday.  Pondering my schedule late Sunday night, I became very anxious.  “Can I handle being out every day?”  “What if I’m away from home and have a bad LDK episode?”  “What if I’m too sick to leave the house?”  “What if, what if, what if?”

Logically, though, I knew I should be able to handle the obligations.  And I sure as hell wasn’t going to let anyone (or anybun) down.

I hate second guessing myself.  You see, I’ve always thrived in stressful situations.  But now I can barely handle calling my bank to dispute a fee.  My heart accelerates, my hands shake, and I feel short of breath.  When I realize what’s happening, I get even more upset that my body won’t cope like it should!

It’s ridiculous.  I disgust myself, to be honest.  Sure I’ve pumped a lot of chemicals and other biological meddlers into my body.  I expect there to be physical side effects.

But the revelation that my mind has been impacted, in any way, is absolutely heartbreaking.

LDK Strikes Again

It seems my posts are as single-minded as I have been lately. Today is cycle 4, day 2. The cycle kicked off with a doctor appointment, blood draws, and an EKG. I was privileged to see the actual doctor since the RP (nurse practitioner) and RN were both on vacation. We talked about my cycle 3 experiences, and I asked in a backwards manner for another dose reduction. “I guess we can’t reduce the dose yet?”

No, I know it is best to stick it out until the next CT scan, which is near the end of this fourth cycle. It keeps everything cleaner. If, for example, I don’t have any more improvement, we know that was the result of the 600mg dose. But if we changed the dose halfway (between cycles 3 and 4), we wouldn’t know which dose was responsible for the change in efficacy.

She offered an olive branch. “How about a few days off?” I countered, “each week?” She shook her head. “Unfortunately not.” And we agreed on a three day break.

Last time it worked well. Between cycles 2 and 3 I had a four day break before starting a lower dose. And once I started that dose I had at least two days with no ‘episodes’ followed by two days with milder side effects. I thought with this three day break I might even get a whole week without a major episode. Then I would just have to get through 2 weeks before I could lobby for another dose reduction, if needed.

The doctor’s other recommendation was to try taking the medicine at night. Evidently some patients have seen a reduction in side effects – or are sleeping through them – when taking the drug in the evening. When I last spoke with another trial patient, she shared the same experience. Things were better when she took it at night. She was only occasionally “waking up to throw-up in the middle of the night.”

I didn’t have to take the drug on Thursday, Friday, and Saturday. I really needed the break and tried to take full advantage of it. On Thursday night Seth and I went to a happy hour for a friend taking a new job. Then on Saturday we went out to dinner after a full day of errands. I would have a light wave of nausea now and then, but I controlled them with Zofran.

Unfortunately Sunday night came just as scheduled, and I took my first evening dose shortly after dinner. I didn’t know what to expect, but I tried to remain positive. If others had experienced improvement, then I should too, I thought.

I hadn’t slept a bit when I started feeling nauseous around 2:30am. I sipped a Diet Coke to calm my belly and tried to sleep once more. But I kept getting sicker. I tried to think of what could be making me sick. Did I have something unusual for dinner? Could I have picked up a bug when I was in public over the weekend? I was about 30 minutes into it when I remembered that I took the trial drug earlier that evening. I chided myself for being so naive, took a Zofran, and tried to find a comfortable position.

But it kept getting worse. Cramping wasn’t a problem, I only had a few mild ones. But the nausea was killing me. Absolutely miserable, I sent a text message to Seth at 4:00am and hoped he would come downstairs to be with me. Misery loves company.

Shortly thereafter Seth came tottering down the stairs, half-asleep, with a pillow tucked under one arm. He lied on the couch, covered with a blanket, and watched me cry and writhe with nausea and self-pity. I took another Zofran for good measure. Finally, around 5:30, I fell asleep, and my exhausted honey could rest a few hours before going to work. That was the first and last time I would take LDK 378 in the evening.

I skipped a Monday dose and got back on schedule Tuesday morning. Tuesday evening I had a mild episode, all cramping, and it lasted only an hour. Not too bad, I thought.

Wednesday morning I followed my normal schedule. All my usual pills plus LDK, taken with a bowl of cereal or a banana. But that afternoon I awoke mid-nap with a bout of nausea. It started around 1:00pm and kept getting more and more intense. Once again, it took me at least 30 minutes to realize this was medication-related. I couldn’t remember if I ever had an episode like this in the afternoon. It was 80/20 nausea over cramping, and I realized how much more miserable I am when I have no one to complain to. After many hours, a Zofran and a Percocet, the episode had passed. My body was fried, and I couldn’t eat dinner that night.

Thursday was essentially a repeat. This time, though, the cramping seemed to dominate. It hurt so bad and took my breath away as if I had been kicked in the gut. I yelled with each cramp. Maybe it’s a natural pain response; or maybe some part of me thought if I yelled loud enough somehow I could get help. That’s not true, of course. It seems that only time – letting it run its course – brings an end.

I never anticipate when I might have an episode. Oddly it seems to catch me by surprise each time. In fact, I often try to deny the episodes when they start! It isn’t until that first nasty cramp or some time has passed that I’m willing to admit that LDK has struck once again.

Truthfully, though, I’m afraid the frequency of side effects is progressing. I have small bouts of discomfort and nausea at times, even when I’m not having a full-blown episode; sometimes it happens a few times in a day.

I’m planning to ask for another dose reduction at the end of this cycle and beginning of the next (Feb 21). Hopefully a lower dose will be less toxic for me. We tried a similar approach with Xalkori, and after those results, you can understand why I’m not 100% positive it will work.

In happier news, I’m looking forward to some accumulating snow this evening. We’re supposed to get 3-6″. That should be enough for a snow angel and a little romp in my boots. I’m hoping for a good 12″+ storm before the end of the season. If you are in the storm’s path today, please be careful. Stay home, play in the snow, and drink hot cocoa. That’s my plan!

Silver Belle

Shortly after my last Gemzar infusion I noticed I was no longer losing hair at an alarming rate. Within a month I was losing only a few strands a day, as is normal for me. I didn’t realize it then, but the regrowth must have started too.

My new hair is approximately 2.5″ long. It sticks out in unruly bunches despite my attempts to tame it with headbands and scrunchies. But that doesn’t bother me much – I’m glad to have it back!

That said, I’m very perplexed. An alarming amount has grown back as bright and sparkly as tinsel on a Christmas tree! It’s most noticeable at my hairline and part, but I assume it is consistent throughout my mane.

I started getting a few grey hairs in my mid twenties. I never really cared. It’s something that happens to everyone. Plus, with dark blonde hair a few grays don’t really stand out. I also highlighted for years, and some were probably randomly colored, too.

Even looking in the mirror last week, my reaction was aloud and with awe: “Oh wow! Would you look at that?!” I couldn’t believe that a lot of the new growth was bright silver. And while I’m not running to the hair dresser, I am curious to know what happened.

There was recently a feature on TV explaining why the president has greyed so quickly. It discussed how certain cells can age four times as fast when under great stress and cause premature graying in people who are already genetically predisposed to it.

But I wonder if my case isn’t more aligned with some of the opinions in a September 2012 Huffington Post article.

It notes how there are a series of processes that take place during hair growth. And an interruption in the process where melanin-producing cells are coloring the hair is responsible for non-pigmentation of the hair shaft. And an “interruption” could be a number of things; the article cites head trauma, surgery, nutritional deficiencies or “any other stress that the body perceives as a burden.”

I also wonder if I could have fried some of melanin-producing cells during my rounds of various chemo drugs. Or maybe by drowning myself with a trial medication whose complete impact on the body is not yet understood. It is also possible that my mental stress is causing this too: but I think that is less likely. I’ve managed a whole lot of stress long before cancer. Wouldn’t I have grayed then?

Those are two schools of thought, although I’m sure there are others. I can’t yet say how much of my hair has grown back gray. It’s also worth noting that the strands that never fell out have not turned gray – at least not that I’ve noticed.

I guess it will continue to be my own personal little mystery. And truthfully it really doesn’t matter. Whether it grows blonde, gray, blue, or green, I’m very glad to have it!

All Aboard!

Tomorrow I resume Xalkori at the lower dose of 200mg twice a day. I know I need this medicine, but the reprieve has been nice.

This week I felt more energized than I have in months. On Wednesday and Thursday, I applied my zapping TENS unit and went for a short walk. Sure, I got really tired and breathless, but at least I had the ambition to try.

And then today I had a huge breakthrough! I had to go to Kohl’s, and they had no scooter. I took a cart for stability; and I planned to find a place to sit when needed.

Imagine my shock when after AN HOUR of browsing I had no back pain. None. It was the freakin’ Xalkori that had crippled me!

I’m very relieved to have an answer for some of the fatigue and all of the back pain. But I’m bummed that I have to put up with these side effects. It’s possible that they won’t be as severe on a lower dose; of course it’s also possible a lower dose won’t be as effective in controlling my cancer.

Either way I’m back on the Xalkori train tomorrow. As always, I’ll hope for the best and brace for the worst!