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.

Pack Your Pony!

On the Friday after Christmas, Seth and I closed on a very special property where my mom and our small family of animals will live much closer to us. I’m over the moon!

Having my mom and lifelong best friend so far away has been one of the most difficult things about being sick. We have an integral bond not completely definable in terms of friendship, love, and endearment. (It will make good book fodder should anyone ever talk me into writing my memoirs.) Needless to say, it’s a key ingredient in the special sauce that is my intrinsic happiness.

And while I am too scientifically stubborn to believe my medical progress is directly correlated with stress or support of one relationship, I know many of my friends and even casual acquaintances reading this who do. It doesn’t seem like a productive ‘argument’ to have, so I’ll agree “stranger things have happened” and leave it at that. What I do know is that I will be a much happier bunny once my mom and I are more available to each other than we presently are.

Knowing this better than anyone, Seth has done his part to move heaven and earth – again.

I grew up on a small, rural farm which my mom literally built with her own hands, and sadly we lost it due to a combination of the economic downturn and unrelated domestic events. Seth and I had been work friends and dating for only a short period of time; I was bowled over when he offered to invest in a new farm, essentially providing enough capital that would allow us to keep our family (animals) intact and not homeless.

We had to find a place on a very small budget, and time was of the essence. We found a tract of land with a half-finished house in West Virginia. The distance would be a challenge (going from a 2 hour to 7+ hour drive), but what we could afford wouldn’t be anywhere near Philadelphia. I promised my mom I would visit once a month, and that’s exactly what I did for two+ years, while I was healthy and airplane flights were competitive.

Unfortunately things went to hell in 2011. My mystery illness turned cancer diagnosis made independent travel nearly impossible, and the 7+ hour drives became more frequent.

Previously Seth and I would drive out for a week-long visit just two or three times a year. Now he is schlepping me there every six weeks or so. (And not once has he complained.) Seemingly overnight the farm’s distance went from unhappy to unbearable. I was in and out of the hospital, while my mom had no one we could trust to tend to the animals, not to mention help her with a very long, stressful drive, so she could visit me.

We listed the farm as ‘for sale by owner.’ A year passed with little activity. We broke down and decided to list with a Realtor in early 2013. To date, we’ve had some interest (showings) but no offers. I have listed the property information at the end of this post and appreciate you sharing the listing with anyone who will read and share.

Seth and I knew we had to sell the existing farm in West Virginia before buying a new one. To carry an extra mortgage for an undetermined length of time would be foolish, stressful, and insane! And that doesn’t even explain that I would need to use every penny I’ve ever amassed for a new downpayment. What kind of crazy person would do such a thing?!

Me, apparently! There are few events that will make two balanced, logical and otherwise risk-adverse people take a chance like that. And frankly, I hope you never figure out where your limits are. Mine was a grand mal seizure and the discovery and growth of a dozen+ small brain tumors. Seth having to check for life signs after my seizure may have been his breaking point.

Very quickly our priorities clarified, and we made the conscious decision to move my mom immediately, no matter what that meant.

Fast forward five months, and here were are! The house needs some basic pieces (appliances, a floor refinish), and the barn and fence need patching before we can safely move everyone to their new home. Paint and other cosmetics will be projects along the way and aren’t considered critical to the move (or in the budget!)

Even though she will have to manage everything at a distance, my mom hopes to move by the end of January. I think an end-of-February goal is more feasible. She has been tasked as the general contractor on all things ‘new farm,’ and my brother (a marketing pro) will continue to focus his attention on attracting a buyer for the farm in West Virginia. Please help us spread the word about this beautiful property for sale!

* Via our custom, mobile-friendly site: http://propertyforsalewestvirginia.com/

* Via realtor.com: http://www.realtor.com/realestateandhomes-detail/2468-Dudley-Hill-Rd_Middlebourne_WV_26149__M37821-07279

* Contact our Realtor, Harry Cain, at (304) 455-2550 or harry_cain21 (at) hotmail (dot) com

I’ll do my best to keep you updated as the big move nears! Please know that moving our furry and feathery family is a delicate process! My fundraiser stays open to help me pay all expenses on my Frog List, including the cost of moving one very handsome, roan pony! 😃

Here’s to the Happiest New Year yet!

Year Two

I awoke November 14 and knew I had completed a milestone most never would: I had survived with rare, terminal (stage 4) lung cancer for two years. If you factor in my June diagnosis of a dozen brain metastases, the typical survival rates shrink exponentially.

I enjoyed celebrating my cancerversary. I suppose I could have seen it as the day my life crumbled. And in some ways, that would be accurate. I lost a lot when I gained my diagnosis.

But the fact I’m still alive is like giving cancer the middle finger, even though I’m not normally the vicious “let’s battle cancer!” torch carrier. My fight is quieter and feels much more personal, even if the accounting of my progress and feelings is quite public.

So this Thanksgiving I’m thankful for my loved ones – human, furry, and feathered – and for the chance to spend another year learning to love them even more. 

Camptosar: Week 1

The days immediately after treatment are not the time for clear-minded, sharp writing. But during these precarious and emotional times, keeping this blog current seems more important than my grammatical shortfalls. For whatever reason, though, this post has been particularly stubborn, requiring four days and way too many drafts!

Monday was a milestone in my cancer journey: day one of a new treatment.

Camptosar, FDA approved in 1996, is a brand name for irinotecan (eye-rin-oh-TEE-kan). It is a chemotherapy drug most often used for colon and rectal cancers. The most common side effect is diarrhea, which can be severe if not managed aggressively. The onset can be early or late. On Wednesday I began to experience the late-onset side effects. The cramping pain was much more debilitating than the diarrhea. But following a strict schedule of huge Imodium doses did the trick, and now I’m right as rain (I think). As with most chemotherapies, there is a laundry list of other possible side effects. This comprehensive list is courtesy of the ACS. My main side effect was just feeling like crap. Because that’s what chemo does: it makes you feel like crap. (Eloquent, I know…)

This is my third line of chemotherapy. I keep track of my cancer treatments and other milestone dates using a cool site called Timeglider. The events there link back to applicable blog posts too, in case you decide to check it out. 

Beginning in May 2012, I had a cocktail of carboplatin, Alimta, and Avastin to try to control aggressive lung cancer growth. Although I enjoyed the treatment schedule (infusion once every three weeks), I experienced no improvement in my condition.

In July 2012, I began Gemzar (gemcitabine). This weekly infusion was very difficult for my body to handle. I had some nasty, uncommon side effects and was rather relieved when I learned it wasn’t doing anything to help my cancer.

Now I am revisiting the chemotherapy well in an attempt to halt the cancer that has metastasized to my brain. My doctor chose this drug because it has the best chance to be effective (not because it’s going to be the gentlest). The odds of it benefiting me? Who knows. And when my doctor saw the question coming, he simply responded: “There is no other Jessica Rice.”

I began to press for more information. His next answer – the Camptosar brain met stats and his experience with a standard patient – was composed and sitting at the tip of his tongue. But I stopped him. I knew only his first answer was accurate.

There is no one else who has what I have, has responded to various treatments/trials in such ways, and perhaps, has even lived long enough with this very aggressive lung cancer to try what I’m attempting in controlling the growth of new brain tumors. I guess I’m pretty special, although not for the reason I would prefer!

My doctor once told me that every lung cancer patient – if able to live long enough – will get brain mets. Most don’t ‘get the chance,’ for lack of a better phrase. And for those with slow-growing varieties of lung cancer, that could be 10+ years! (I don’t want to incite any unnecessary panic.)

On Monday morning Seth and I arrived on time for my 8:15 appointment, and we didn’t wait longer than 10 minutes to be escorted to the back. I stepped on the scale and unwisely peered at my weight before heading into the exam room. Talk about adding insult to injury! (I should stop eating so much and retaining fluid once I’m off daily steroids.)

One nurse began the routine questionnaire while another accessed the port embedded in my upper right chest. The thick Huber needle didn’t hurt much. They flushed the direct access catheter with saline, and I made my standard funny face. I am one of many patients who can taste when some things are pushed into the bloodstream. Saline flush isn’t yummy, but at least I know when a vein is hit correctly!

The next step is to draw blood so they can run my ‘counts.’ This tells the doctor a number of things and assures that I am indeed healthy enough to receive treatment that day.

The nurse pulled back on the syringe. The saline was now tinted bright red, but it wasn’t pure blood. She pumped the syringe back and forth, back and forth. No blood.

(sigh) Sometimes ports are stubborn. And during my past two office visits, I’ve had to do some gymnastics to get the flow started. In 18 months of port ownership, I have had a real problem with it only once.

We tried the moves that nurses swear by. I gave myself a bear hug, stretched my neck around, lied down completely flat, raised my arm at various angles, and shrugged my shoulders. They flushed more, tried some heparin, more flush, a larger syringe. But then part of the plastic hub snapped off.

(sigh) They would have to remove the needle and stick me again. This one hurt briefly, but that wasn’t why I was fighting back tears.

I had remained quite calm for the first half hour, but I was starting to break. When a device implanted in you doesn’t cooperate, you’re allowed to panic. (I wrote that rule.) It didn’t help that two people had been hovering extremely close to me for a long time. I was physically overwhelmed by the invasion of my personal space. Knowing that I was reaching the end of my rope, we decided I would see the doctor and complete the rest of the exam before trying anew.

The port trauma was enough to keep me pretty quiet during Dr. Roush’s exam and our Camptosar conversation. He did the entire ‘this is your new drug’ song and dance, but much of it was a repeat of our phone conversation. He was thorough, and I didn’t have any new questions.

As I mentioned earlier, I refrained from pressing him for Camptosar odds. And I was in such a ‘bad place’ by this point, that my brain couldn’t have generated any positive conclusions from any data he could give me anyway. He finished his exam and asked the nurses to “tPA” my port.

tPA, tissue plasminogen activator, probably does a lot of things. But I know it as “Drano for ports.” A small amount gets injected just far enough to journey to the end of the port catheter: the tube that terminates at the top of my heart. Once there it breaks up the fibrin sheath that can develop over the end of the line. The build-up is like a flap. When fluid goes in it pushes open without a problem. But when trying to withdraw fluid (blood), the flap gets sucked against the tube end and nothing can come out.

The nurse injected the tPA, and I waited for an hour. Then… POOF! Lots of easy flowing, dark, rich, good, yummy blood. Yay!

I was exhausted and ready to go home, but the day’s events hadn’t even begun. My bloodwork was run, Dr. Roush approved my orders, and pre-meds were started. We were exactly two hours behind schedule.

It took more than four hours for the rest of the drugs to be infused. The pre-meds were the same I received with Gemzar: Aloxi, Decadron, Ativan, and Pepcid. Camptosar came last and took two hours for infusion. We had to slow the drip a little when my nose started running and eyes got watery. Moving forward, this will probably be a four to five hour day depending on how busy it is in the infusion room.

This is a weekly treatment given 3 weeks on, one week off. It is the same schedule I was supposed to follow with Gemzar, but my body wouldn’t tolerate three consecutive, weekly treatments. This is a totally different drug, though, so I go in expecting the best and this schedule:

Treatment Dates:
Oct 20, Oct 29, Nov 4
Nov 18, Nov 25, Dec 3

After those two cycles I will have an MRI of the brain, and the radiologist will assess my progress. Hopefully there will be a) no new brain tumors and b) less suspicious “brain lint.” If brain tumors continue to grow, that will be the end of my Camptosar experiment. I’m not sure what drug or trial would be next. Those are concerns for another day.

This week I’ve focused only on recovering as quickly as possible. Today is all about packing and travel. The wait is over, and it’s time for our awesome weekend at the NASCAR races!

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!

CyberKnife

My first CyberKnife treatment is at 4PM today.  I know I should be relieved to start knocking down my brain tumors.  Instead, I just can’t help but feel that I’m crossing a threshold whose significance I have barely comprehended.