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.

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.

Fattening the Frog

Jessica’s secure fundraising site is accessible here.

While coming to terms with my diagnosis, I realized there are experiences, moments – even things – that I want for myself. And these are consistent, no matter if my timeline is to be measured in one year or ten.

I felt a lot of pressure to track these things via a “bucket list.” But my imagination kept teasing me with this very literal vision of a stainless steel bucket far too cold and anonymous to contain hopes, dreams, and otherwise fun things.

I needed something that was more… Jessica. It had to have an animal-association, be a bit humorous, and have a touch of whimsy amidst such a serious topic. And thus, The Frog List was born! It contains all of the things I want to do before I CROAK!

It was a soft launch: I simply added a page to my existing blog. But soon two very cool supporters assembled a fundraiser page which would draw attention to my list and the resources needed to make it come true.

The fundraising is managed and secured via YouCaring.com. It is a fee-free service which connects people like me and the folks who have the means to help, no matter how small or large the donation.

Knowing my needs and wanting to be as practical as possible, we took a guess at time and donation goals. I extend the time deadline from month-to-month, and I’m not quite halfway to my $10,000 goal. I feel it is a lofty, but not unobtainable goal, given the experiences of other YouCaring users in my situation.

Some donations are monetary. Others are donations of actual experiences or items on the list. Either way, it’s important to me that I keep the site updated so the generous donors (and potential ones too!) know exactly how The Frog List has made my life easier and more enjoyable.

To date, the following items and experiences have been donated: a special lightweight wheelchair, NASCAR race tickets (and Hot Passes), Cirque du Soleil tickets (and meet and greet), and George Strait concert tickets (in progress!).

I would like to give an idea of where the cash donations have been spent too. Some of the larger expenses have been: flights/hotel/car rental for the NASCAR race; gas for trips to see my mom in WV; and making sure everyone who wants money at least gets a minimum payment. My Rite Aid prescription bill alone rivals most car payments!

While visiting friends and family for Thanksgiving, a friend gave me some really good advice. “Don’t be shy to extend the date or the fundraising goal as things change.” Her youngest daughter was born with some huge medical hurdles, but luckily she’s a thriving happy little girl today. 

My friend’s words of wisdom revisit me often these days. We are nearing completion of the most critical item on my Frog List: Move my mom closer to me. We found the new farm, and the move is about two weeks away! We must sell the existing property ASAP, but having my mom close to me will outweigh the stress of an extra mortgage.

I’m so excited it’s finally happening. I have lived through two years and two months of bad news, treatments, and hospitalization with her too far away and me too unwell to make the frequent trips I once did.

Through all the planning, I just realized that I’m going to need different accommodations at the new farm than I have had in WV (the existing farm).

Most waking hours, in order to be physically comfortable, I need to lie down or at least recline. (In fact, I often measure how well I’m doing by how many hours I was able to spend out of bed on a given day.) At home, I have a daybed in my living room. I replaced my loveseat with it about six months after my original diagnosis.
Having a bed downstairs also allows me to avoid my arch enemy, stairs, on most occasions.

At the farm in WV, I have been spending more and more of each visit isolated in the guest bedroom because there is no place for me to lie/recline comfortably in the living room.

Therefore, I want to buy a sectional sofa (maybe with a recliner) for the new farm. I want to have a place I can be comfortable and interact with everyone during waking hours. 

I definitely think this warrants an addition to the Frog List. I wouldn’t spend money on anything fancy; it seems that a basic sectional starts around $1000. (It just has to be very comfy!)

This started me thinking: How do I decide what I should add to the Frog List? I came up with two criterion: 1) Will it make my daily life easier or more comfortable? 2) Am I the primary benefactor? I am happiest when the ones I love are, too; but when asking for such generosity it’s important I remain focused on the goal at hand. (By the way, asking for help is very hard.)

Right now that’s the only ad hoc (and somewhat immediate) item I want to add. Yes, I can use all the help I can get with mountains of medical and living expenses; and I’ll be reaching out to a few key folks when it’s time to say “I do.”

But I hope to order my “comfy place” before the end of February. Thank you for everything you’ve done to date, and in the future, to help me fatten the frog!

Jessica’s secure fundraising site is accessible here: http://www.youcaring.com/medical-fundraiser/jessica-s-frog-list/84760

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!)

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!

Semi-Precious

For ten days I’ve been sliding down the sheer face of a cliff, desperately grabbing for something to slow my plummet. It’s been the most painful and unsettling time I’ve experienced since my diagnosis.

Every problem feels magnified. There are no small issues. Nearly every decision is life-changing or life-threatening. I’m trying to pick through them, teasing out just one at a time so I can try to deal with something. So I can try to unravel a mess of a life.

This week I began to understand one of my many current flaws: I equate people wanting to help me with people’s want for me to live.

When I was first diagnosed, my friends had a wonderfully successful fundraiser that really helped me get through that first year and a half with an income cut in half and boatloads of new bills. Seth and I escalated our plan to combine our homes and households. I cut my expenses and changed my lifestyle to better accommodate my new income. But I still have important responsibilities, and after putting it off as long as possible, I had to bite the bullet and ask for help again.

The decision to go public seemed logical. My blog has a small but respectable audience, and I thought maybe just $10 or $15 from a lot of friendly strangers wouldn’t have a huge impact on our economy, but it would make a very significant one on me. Two new and very fun online friends helped me launch my YouCaring website at the beginning of September. We planned it using my signature Frog List: Things To Do Before I Croak.

Unfortunately, there are many people in need and only so much help to go around. There would never be a fair way to say one person is more deserving than another. (I wouldn’t anyway – it would be rude!) But I can tell you that a lot of people have a better story than I do.

I’m well-educated, middle-class, and I’ve never saved anyone from a burning building. I’ve always tried to do the right thing and live my life focused on love first. But those things don’t make me stand out. They certainly don’t make me “better” or more deserving than anyone else.

The most unique thing about me is that I could be you. Average health, with friends, a family, and a bright future, yet dying very suddenly of lung cancer. My true WANT is to be worthy of your time, interest, and compassion; not your $20.

But desperation brought me to a point where I just thought if people cared enough, everything would be okay. That somehow there would be enough strangers who cared and had money to make the end of my life as easy, comfortable, and happy as possible. I now see how illogical this is, and quite frankly, I’m a bit embarrassed for getting so carried away. Donations do not equal caring. Nor do they equal whether or not people have given up on me living.

Part of me needs to accept that I’m not going to get the help I need. I think it’s so difficult because I’ve always been able to work hard to get what I needed to take care of my family and myself. But those rules no longer apply – and that screws with one of my basic value systems. I keep coming back to “I must still have something to offer someone…”

I’m going to continue to focus on the things that bring me that intrinsic happiness. Writing for my blog and hopefully other publications too. Spending time with my loved ones. Neverending property searches to get my mom closer to me. And maybe it’s time to think about wedding details too. My Frog List will continue to drive the fundraiser website, and I will have new updates posted soon! If someone chooses to contribute, I promise the money will be used for something that will bring me peace and joy.

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.