Highs & Lows

Success!

The move is complete. My mom and our animals have safely relocated to eastern Maryland. If I pick up the phone and say I need her, she can be by my side in one hour and fifteen minutes flat. That gives me the piece of mind I’ve been missing since I was diagnosed more than two years ago.

The weather completely botched the move schedule and condensed an 8 day plan into 3. It wreaked havoc with our tasks and nerves; unfortunately this means a future WV trip will be needed to complete some little projects. But still – the move complete, and it’s coming off The Froglist!

We Now Return You to Your Original Programming

I still have cancer. No, that’s not news; but I’ve been distracted by planning and executing a very complex move. That said, I owe my friends, readers, and this chronicle itself many updates (or lowlights, as they may be.)

The Scans

After three months of Camptosar, I had scans in early January to see if it was working. The PET scan was unofficially stable: there is nothing significant enough that we have to deal with it. I think it’s a nice way to say “yeah, cancer may be growing/spreading in your lungs, but there’s nothing we need to tend to right now.” And it’s absolutely not measurable. (More on that later.)

In contrast, my brain MRI was a virtual shit-show. (My technical terminology, of course.) I have new spots. All are small, less than 1 cm, but the people who read the scans and write the reports didn’t even bother to count them. Dr. Roush told me about one or two old, zapped ones which may have shrunk; he seemed like he was desperately reaching for something positive to say.

Nothing is CyberKnife-able (boo) or surgical (yay), and for the first time I understood that anything we do from here on out is a chemical solution: pill or infusion, trial or FDA approved. Those are the tools that remain.

Trial Tribulations

Armed with crummy news, Seth and I prepared for the drive to Massachusetts General Hospital in Boston. We thought we would meet once again with Dr. Alice Shaw and enroll in the next available drug trial for ALK+ lung cancer. It’s good we called ahead…

There is a drug in trial that is showing promise for ALK+ lung cancer that has metastasized to the brain. Unfortunately, I do not meet the requirements for the trial. Specifically, the patient must show measurable tumor growth in the lungs. Not only are my lungs generally stable, I’ve never had the kind of lung tumors that could be measured in centimeters, for example. The drug company could change the rules and remove or relax this requirement in the future. But for now, there is no trial available to me.

For Now

At the end of January I began a chemo drug called Temodar. It’s used to treat primary brain tumors, which I don’t have, but both Dr. Roush and Dr. Shaw thought it was a logical next step. The key is that it is known to cross the blood-brain-barrier. Common side effects are messed-up blood counts and fatigue. So far my counts are acceptable, but I have experienced some other popular side effects like headache, nausea, and fatigue.

I have a growing list of other issues and concerns which are common with brain lesions and swelling, but I’m not ready to discuss those in detail. My oncologist and neurologist are adjusting the doses on a couple medications to try to mitigate some of my overall unhappiness.

It’s been difficult to stay in touch with my closest friends… to even know what to say. Many days I feel like I’m falling apart; some days I actually am! And I don’t have the energy or desire to lie when they innocently ask, “How are you doing?”

There have been many DIY projects associated with the purchase and move, and realizing all the things I can no longer do has made me feel very inadequate. Most of these are things Seth and I enjoyed doing together too. Now I just watch as he replaces electrical outlets or installs a new faucet (my fine motor skills aren’t very dependable lately). It’s also frustrating to require help to accomplish anything. (In other words, I’m obnoxiously needy!) I know Seth loves me and would do anything to help and include me, but I miss being his equal partner-in-crime during our DIY and other miscellaneous capers!

The H Word

On Monday my oncologist brought up the topic of “hospice” for the first time. Once a patient decides to stop curative treatment, they transition to hospice. As I understand it, insurance officially stops paying for anything meant to cure the person and instead focuses on what’s needed to provide comfort and symptom relief. (It’s not that we ever thought I was curable, but receiving CyberKnife, WBR, and chemo are considered such.)

I’m glad he brought it up. There had to be a first time, and now the door is open to continue the discussion. I’ve been able to deal with a lot by pretending my situation isn’t as serious as it is. And I know beginning hospice doesn’t mean I will die by a certain date. I’ve read a few stories where people flourished and even lived for a few “extra” years once they make the transition to hospice. It makes sense that some people thrive once they are out from under the thumb of constant treatment.

I feel that I should do some homework and interview a few in-home hospice providers. I’ve made a couple calls and left messages in the past, but I chicken out and never answer when they call back. My oncologist casually recommended a close, small place that has 10 “very nice” in-patient hospice rooms. I understand the benefit of having a nurse available 24/7, but I think the comforts of home will probably trump all!

Hopefully this conversation is premature. Hopefully new tumors stop appearing at such an alarming rate. Hopefully I stop becoming more and more symptomatic! I wish I knew my timetable, but there is no way to even guess. The immediate goal is to reduce the negative impact of chemo and other meds so I can spend more quality time with my loved ones. And hopefully Temodar will keep new tumors from sprouting while I’m busy enjoying life.

One Day in June

I drafted this post just two weeks after my diagnosis with brain tumors. Although it’s old news, the feelings of that day – relief and exultation – are still quite palpable.

I’m not sure anyone needed a wake-up call less than I did. I’ve always been quite grounded in reality, and my diagnosis of stage IV lung cancer at age 30 cemented that.

Unfortunately I now look back at how much “simpler” life seemed when I ONLY had primary lung cancer to manage.

I assume there is a possibility, with most varieties of cancer, that a piece can break off, travel through the bloodstream, and deposit on the fertile bank of a new organ. And when you simplify it as such, I’m surprised I wasn’t sitting around waiting for this development.

But yesterday (June 28), I was able to press pause on twelve very active days of dying.

My primary oncologist called and left a voice message while I was getting zapped by the CyberKnife. Seth and I parked at a nearby restaurant, and I synced my phone with the truck’s hands-free system. “Hey, it’s Doctor Roush. It’s Friday at 12:30. Give me a call when you get the message. Thanks, bye bye.”

I knew he had my PET scan results. The blood drained from my face at an alarming rate. I looked at Seth and said, “This isn’t good.”

Quite frankly, I wasn’t expecting to hear from him until our 8am meeting on Monday. No news would be good news, right?

We stayed connected via Bluetooth and returned his call. Fortunately he was available, and the receptionist put us through immediately.

“The PET scan looks good,” he said.

“What? Really?” I exhaled.

He confirmed. There were no signs of metastasis to any other organs or bones. The spot on my spine was stable, too.

In that moment I found the strength to keep pushing forward.

Seth and I quietly celebrated the rest of that Friday. I had a little ice cream after lunch and dinner. I knew the joy was misplaced: the blow had been dealt, and I had quite a mess on my hands. But to take a few hours and revel in the silliest “no new cancer today!” cheer was exactly what I needed. 😊

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.

Awaiting Autumn

I’ve been thinking a lot about autumn. It’s my favorite season, but that’s not why it’s on my mind.

My next PET scan will be around September 27. I wonder what my lungs are up to these days. I’ve barely thought of them since starting whole brain radiation (WBR) two weeks ago.

The end of September… By then the short-term WBR side effects should be wearing off. I certainly won’t have any hair; that won’t grow back until December (if I had to guess).

And frankly, I’m tired of waiting for it to fall out. I know I’m going to lose it, so let’s just get this over with already. Let me go through the grieving process. Let me be mad and upset and stomp and cry and scream. No amount of logical reasoning will prepare me for the emotional storm that’s coming. I’m sure my friends and family are sick of my bellyaching on the subject, too. But this is a very personal and traumatic event. No one can cushion that blow.

I have ten treatments down and five to go. It’s falling out slowly, and I’m noticing that the bald spots from CyberKnife have expanded into small patches. These were all underneath the top layer of hair and thus relatively camouflaged. The patches aren’t noticeable to others yet, and I’m not going to shave it until I can’t stand looking at the radiation-poisoned me in the mirror.

I’m not even sure where in the house I’ll do it. Or if I want Seth’s help or not. I know I don’t want to go to a barber shop or salon; it’s much too personal a process to share with a stranger.

I suppose I will need to cut the bulk of it with scissors before buzzing the rest with a short guide on the blade. Will I feel empowered or will I bawl through the entire process? I’d like to say I’ll be brave, but I think I know how this is going to play out.

Many people lose their hair after ten treatments. Of course, I’m receiving more, smaller fractions of radiation over a longer period of time than is standard. But who knows. I guess it could take another two weeks to fall out. Your guess is as good as mine. At this point, the sooner I lose it, the sooner it can grow back.

And now that I feel like I can “pull off” shorter hair, that’s even less time until I will consider it “acceptable” again. (I’m really trying to find anything positive here.)

It’s not that I’m overly vain, either. I’m really not too concerned if people stare. I’ll make funny faces in return!

No, this is about how I see and feel about myself. I’ve always had very low self-esteem and a poor body image to boot. Honestly, I’ve felt for many years that my hair is the only thing that’s made me a palatable member of the human race.

It’s also what makes me feel feminine. I’ve never worn makeup and jewelry by habit, and I know that will need to change if I want to be readily recognized as a woman.

There’s another thing, too, which I think many healthy people don’t get. Like every other treatment I’ve had, WBR is a palliative therapy. But unlike some others, this has really felt like a step towards the eventual end. I won’t be pulled back together as a healthy person when this is “all over.” That makes a world of difference and is why when most other female “survivors” tell me they went through it, I just can’t identify with them. Many of them grew back hair and continued on living their lives. Without being too dramatic, I’m just hoping to have the time to regrow a thick, full head of medium-length hair.

On a lighter note, I’m on the lookout for cute hats. I don’t see myself as a wig person, but I do hope to amass a small collection of hats (no chemo caps needed) for autumn and winter. If you see something online, send me the link! And if you need my address for anything (I look forward to getting the mail these days!), please drop me a line at stageiv (at) live.com.

Hair today, but certainly not gone tomorrow,
Jessica

Overachiever

Seth and I sat in the exam room, cried, and tried to comfort each other while my radiation oncologist confirmed my next treatment with Dr. Roush. It’s an extra call he didn’t have to make; but he offered so I would be assured that whole brain radiation (WBR) was the right course of action.

The scan result was a real let down; if it was a test, I got a D, maybe a D minus. I had prepared myself for the most probable case: unresolved brain lint. That would have led to one month of chemo, which may have fixed it.

Instead, the scan showed 5 new tumors which developed in the past month. It was devastating news. Absolutely devastating.

Now I’ll spin it for you like I did for my mom’s sake. (Please know she is forbidden from reading this blog and understands/respects that. I ask that you do the same should you discuss anything with her.) My mom knows that there was an increase in “brain lint” and that I have to undergo WBR. With everything she’s been through lately, I just didn’t have the heart to tell her that the “new things” are actually tumors. I will tell her once WBR has annihilated them!

The reason I gave myself a D and not an F on the scan is because some of my original five tumors shrank a little after being treated with the CyberKnife. The change in the others was unmeasurable, but CyberKnife radiation continues to work months after treatment. I consider this good news, as it means my tumors have responded to radiation.

I begin whole brain radiation next week. The total amount of radiation will be standard for my situation, but I will receive it in smaller doses over more days than is standard. (This will theoretically reduce day-to-day side effects as it allows my body to heal from a smaller dose each day.) I’m expecting 15 days of WBR: Monday through Friday for 3 weeks. Each session will last about 10 minutes, and I will likely lose all of my hair towards the middle or end of the process.

Some other likely, immediate side effects are nausea and vomiting, although I will take small doses of steroids on treatment days to minimize these. AUGH… More steroids. I’m told the tiny dose of dexamethasone (1 mg) will be a cake walk compared to the daily 12 mg I had post-seizure. I hope that’s true; having a fat head and no hair would be hideous. Other likely side effects include redness and sensitivity (similar to a sunburn) on my head and ears.

Long-term side effects pop-up over months and years and vary from patient to patient, so I’m trying not to focus on something that may not apply to me. If you’re curious, I’m sure the Internet can satiate your desire for knowledge. If nothing else, I know youth is on my side.

The next topic sent me over the edge. After I finish WBR, the plan is to start chemotherapy. I lost my composure and started sobbing aloud. Dr. Lamond began to back-peddle and explained that the plan might change. “We’ll just take it one step at a time,” he said. Between tears and gasps for breath I tried to explain how this last month (with no treatment) has been wonderful, despite the frequent headaches.

Yesterday was awful, indeed. In fact, much of the last week really sucked. This Thursday we meet with Dr. Lamond again to prepare for WBR. I need to sign consent forms, have a new mask made, have x-rays taken, and schedule my sessions.

I’m not ready for this. I thought I would have another two or three months before I needed WBR. But once again, my cancer is an overachiever. Everything seems more aggressive than is normal.

Seth asked for a prognosis, but, of course, there was no clear answer. Dr. Lamond explained that after WBR we would use CyberKnife to treat any new tumors. He also said it is key to do WBR while the tumors are small. Trying chemo first may allow them to grow to a size where a lot more radiation would be required to get rid of them. It is much more likely that everything will be wiped out if we do WBR now. That’s why I’m moving forward with this plan.

When I know my treatment schedule, I’ll share it here. Until then I’ll try to stave off the pop-up headaches, take many naps, and support my mom through the tough time she’s having too. It’s been a hell of a week, and something tells me a flip of the calendar will bring no relief.

Watchful Waiting

This will not be an eloquent post. My brain is fried from two weeks of stress, two CyberKnife sessions, a boatload of steroids, and very little sleep. Please don’t judge my written products on this rambling!

With the disclaimer securely in place, I can now tell you that I have an update and a plan; I shall soldier on with a mediocre post intended only for disseminating this information.

I met with my primary oncologist, Dr. Roush, in a new office yesterday. It was our first appointment since October 15: the date I was dispatched to begin the LDK378 trial. We’ve talked on the phone, and I saw him in the hospital two weeks ago, but this was our return to the professional office setting.

Previously we met just two miles from my home in an older but functional professional medical building. But at some point in November, the building’s tiny elevator broke; it took so long to fix that they finally walked away from the office lease.

Yesterday it was a 40 minute drive to get to the office. But it can’t bother me too much. I’m just so glad to see my doctor again!

Dr. Roush met me in the waiting room and escorted us to the back where the nurses took over. It was nice to see some friendly faces; about half of the old crew moved to this location. After the usual measurements, blood work and intake questions, I climbed atop the exam table.

Dr. Roush walked in. I motioned him over, arms wide open for a hug. He chuckled a little, “you’ve made my day!” He looked at me and paused ever so briefly. “Don’t take this the wrong way, but you look as good now as you have since I’ve been treating you!”

I was flattered. I did lose 40 pounds on the LDK378 trial, and I certainly look like a healthier person, despite my 5 shiny new brain tumors. Given the way I’ve struggled with extra weight my entire life, I’ll be happy if you call me a “damn skinny bitch” until I’m a size zero. Just make sure you take me shopping for the snazzy clothes I’ve never been able to wear!

Dexamethasone
Now it was time to get down to business. Steroids were way above tumors on my list. It’s time to wean off the steroids. Monday was my first day cutting back, and I will be roid-free by July 17. Woohoo! My face is gross and puffy, my knees are swollen, I can barely write my name, and I’m just exhausted from not being able to sleep for more than an hour at a time. I also regained 3+ pounds just since my seizure. You know that makes me an unhappy bunny!

Lungs
The best news of the visit had to do with my lungs. Thursday’s PET scan looked better now than it has since my diagnosis. LDK378 really me beat me down – lung cancer included!

Here’s the meaningful part: I can ignore my lungs for now and just focus on my brain. I’m not restarting chemotherapy (we were considering Taxotere), I don’t need to hop into the next trial, and I don’t have to uproot my family to Boston for treatment. I don’t have to make the choice (yet), and THAT’S a proverbial breath of fresh air!

Brain
If you regularly follow my blog and Twitter feed, there might be some repeats here. Again – please see the forward to this post which mentions how I’m running at a truly mediocre pace today!

My seizure was on June 16, and I went home on June 18. I had CyberKnife Robotic Radiosurgery on June 24 and 28. I’ll spare you the detail of each scan and doctor appointment which took place before the big zapping. Let me just say that I doubt there are many spectrum of light known to man that haven’t entered my brain/body in the past two weeks!

Next Steps
From here I will venture down one of three short paths. And from what I can glean, my odds are pretty decent for the happiest of options to follow.

My next MRI is on July 19. The best case scenario is that we see the five tumors shrinking AND the residual lesions (which Dr. Roush and I are affectionately calling “brain lint”) disappear. You see, those might be nothing or they might be the development of other tumors. It’s too soon to tell.

Improvement means no immediate intervention is needed. I would continue to go month-to-month, treatment free until an MRI or PET scan showed the need to intervene with a treatment for my lungs, brain, or something else. I could be looking forward to 3 or 4 month reprieve!

The next path is quite sobering but not unconquerable. If my “brain lint” does not disappear, I will have to take at least one month (three weekly doses) of Camptosar chemotherapy. This option is still far more attractive than whole brain radiation and one that Dr. Roush has already discussed with my newly assigned radiation oncologist. After that one month of chemotherapy, we would recheck the MRI and hope to return watchful waiting mode.

The really unhappy path is if we discover, just three weeks from now, that I have a new fully formed tumor, lots of new “lint,” or if any of the five zapped brain tumors have grown. That puts me in the express lane to whole brain radiation and probably chemo too.

The Wrap-up
It’s true that in the new ‘worst case scenario’ it becomes a real possibility that brain mets will do me in long before lung cancer has a shot. Still, I refuse to believe I’m on any sort of “timetable.” There are too many variables.

And I still have a lot of (fun) shit to do before I go anywhere!