April 19th, 2014

C5D4: Walking through mud.

We didn’t really live in Virginia. It was more of a midway point. The kids had finished school in Georgia, my Dad was finishing up a school in Virginia, then we were moving to Germany. In the mean time our family occupied a pre-furnished house on base. The elapsed time escapes me. Maybe a few weeks? I spent my time between the library and the playground with my siblings. The first Sunday we were there my parents found our Girls’ Camp was coming up, and they promptly signed me up to hike 40ish miles on the Appalachian Trail with a bunch of strangers. It was the fourth year hike, something I missed out on with my church group in Georgia, and was excited to still get to participate in.

 

Of course… it’s important to know that I was nowhere near remotely prepared for a 40 mile hike on the Appalachian Trail. Because let’s be honest – no one expects that to just fall in their lap. I had my tennis shoes, and my Mom bought me some better clothes. We borrowed a pack and I was signed up to split a tent with someone I didn’t know. The first morning we met up with the group, I climbed into someone’s car, and waved goodbye to my parents.

 

I wish I had more details for you. The entire trip was kind of a wash. Yes, we hiked 40 miles. No, it was pretty miserable. It rained the whole time. The girl who was supposed to bring the poles for our tent forgot to pack them, so each of us was assigned to another tent. Three people in two people tents, in the rain, results in very wet girls. Hiking in tennis shoes results in very wet feet. I had never been… forced to commune with nature… in such natural ways before…. and I can honestly say I am a huge fan of indoor plumping. After a while my eyes got so used to bouncing up and down as we walked that stopping resulted in that weird dizzy feeling that also happens when you ski all day, then stop. A weird dizzy that makes your stomach a little queasy, while keeping you awake all night.

 

I remember the last day the best. It was pretty incredible. It wasn’t raining, but the trail was muddy and I can still see it, my sneakers just sliding down leaving those thick lines in the mud. I can’t imagine what we must’ve looked like when the adults finally picked up the gaggle of girls, but I know what came next. A hot shower, a gallon of chocolate milk, and some chocolate kisses. Every bone in my body was aching, every muscle twinged at the slightest movement, every item of clothing I owned was covered in mud as I sat in a camp shirt and someone else’s pajama pants. It is honestly the most relaxing moment I can think of.

 

I wish I had a picture to share, but just imagine a bunch of muddy, poncho-wrapped 15 year old girls and that’ll be accurate enough.

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So much of this experience speaks to me right now. The weird queasy feeling that fills every moment of my day, the muscles have to be talked into every movement, the joints that want to keep going but don’t want to do anything all at the same time.

 

I honestly feel like I”m traipsing through mud every day. Or maybe knee-deep snow. Or knee-deep muddy snow? At some point it becomes impossible to describe and you’ll just have to trust me that it’s tiring.

 

My last blood results showed that I am slightly anemic. The nurse said it’s not low enough to warrant a blood transfusion, but it is kind of a double edged sword. My hemoglobin started out considerably higher than the average person – which means it was very healthy. So there are some people who walk around with the level I have now and they do fine, but for me it’s about 5 points low, which is a big difference. I’d still have to go down another four points before I’d need an infusion – and that’s not likely to happen.

 

This infusion was very hard for me – emotionally. I’ve checked out and when I’m not feeling like absolute sh*t I’m living in “I don’t have cancer (unless I see my reflection in the mirror) world”. It’s probably not the healthiest place to reside, mentally, but it keeps me going. So having to hand in my “I feel fine” card for needles and exhaustion was incredibly hard this week. Wednesday found me begging Brandan to just take me home, because I didn’t want to do it any more. The infusion went by, mostly uneventful. Towards the end my port started hurting. They took the tape off, which didn’t make that big of a difference, and I just waited out the last 30 minutes of the infusion.

 

I had full intentions of returning to “I don’t have cancer (unless I see my reflection in the mirror) world”, but Thursday and Friday felt like walking into a pile of bricks over and over again. One of Brandan’s older brothers and said brother’s family came to stay with us for the week – and it really was a God-send. A good distraction when I was feeling okay, and constant entertainment for Ginny. This whole thing has been a bit of a mess for her, trying to redefine how we function as a family when Mommy is doing a bad job at functioning. It was good for her to get to hang out with her cousins all week.

 

 

Aunt Jody kept the little ones well entertained with Easter festivities while I moped around like a zombie. Let it be noted that I spent most of the time in zombie mode. Exhausted, but too hopped up on steroids to sleep for extended periods of time. Sometimes I think “One day I will relish in sleeping for hours on end.”, but then I remind myself that one day I will know what it feels like to have energy unfettered by the exhaustion associated with nursing or chemo (which I have been dealing with back-to-back). One day. It’ll be nice to have that energy, and I am looking forward to it.

 

My last chemo infusion is in the books. It will be May 7. A Wednesday – you should expect snow. About 3 weeks after that infusion I will have another PET scan. It should be exactly like my last one, with No Evidence of Disease. Then I will get scans every 6 months for two years. I will relish and dread these scans, but I will likely spend a majority of the next two years in “I don’t have cancer (unless I see my reflection in the mirror) world. With the early disappearance of my tumors I’m a lot less likely to have a recurrence. I’ve decided to accept this swing of luck, though it is hard for me to have a positive attitude. I’m trying. I’m thankful that (hopefully) our biggest challenge will be paying our deductible each year, and that I won’t be sitting in an infusion chair again any time soon after that last infusion. I’m thankful I’ll be getting this medi-port out in less than a month. That’s a beautiful thought!

 

My hair has started growing in again. Oh… and falling out again. My hair has always grown very quickly. It was quick to fall out in the beginning, and apparently is very excited to come back. I am definitely looking forward to let wind on my head. It’s a very weird feeling.

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Ginny and a neighbor at our Easter Egg Hunt. She was so excited and kept asking when her neighbors were going to come over!

 

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feel tired. It’s kind of my new normal.

I’m sick of my bones hurting. There doesn’t seem much that touches the pain. It hurts to move around, it hurts worse to sit still.

I’m sleeping okay. The anemia seems to counter-act the steroids. Weird thing to be thankful for, but once I talk myself through the aches I’m able to sleep – no drugs required. That’s really nice.

Nausea is not my friend. I have been pretty dependent on the anti-nausea meds these last few days. Today has been busy, with the block party in our back yard, and I firmly believe that distraction is the best medicine. I think today was my “hump” day. I feel better today than I did yesterday, and hopefully tomorrow will just be a little bit better. That’s all I can really ask for.

 

I still flip through all of those signs that people posted on facebook for me, before my first infusion. Those happy messages still carry me through. So I wanted to provide a second, latent, message of appreciation for those sweet messages. I’m constantly reminded of the people who have knowingly and unknowingly pulled me up the hills and helped me along the way. Every message, “like”, and blog comment helps to fetter me along. I hope you all know that.

 

April 8th, 2014

writing prompt

I recently joined a creative writing group. It’s mostly neighborhood friends, or friends of friends. There are a few options each week, and this week I wrote a poem, instead of my standard narrative style. The prompt is also the first line of the poem.

 

Run, Stay Away by Jessica R

The city burned, fire lighting up the night sky,

at hours so early, no one knew who would die.

The sickeningly sweet, caustic fumes flowed

on the wind, in the halls, through the trees that now bowed.

 

 

The start to the day, was plain – almost dismal.

School children with bated breath, waiting for dismissal.

Life moved on, little did they know,

They’d soon have to face the deadly snow.

 

 

When the order came to abandon the town,

it was sudden, unexpected, eliciting a frown.

Little ones dawdled, small bag in a pudgy hand.

Adults thought “three days”, and

with that promise they left their belongings

without knowing they’d never return for their things.

 

 

“Please keep calm and orderly” the buzzing voice instructed,

but mayhem would follow, peace had been abducted.

Despite promises of a safe return home

Their “normal” disappeared as quickly as sea foam.

 

 

They would never return to their sweet piece of earth,

the accident made sure of that, the land would need a rebirth.

The poison still lingers, even to this day.

The signs outside Chernobyl: Run, Stay Away.

// The explosion at Chernobyl occurred 28 years ago this month. The area is still too toxic to inhabit, and the effects of the explosion are still affecting people today in the various forms of cancer and disease caused by radiation poisoning.//

 

I used to think about going there, and exploring. It’s weird how much my head space has changed. I used to think that risking a little exposure would be worth seeing such an interesting place. Now I shudder thinking about the minute amounts of exposure I’ve already received. Weird how quickly things change.

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March 30th, 2014

Back to Blogging

It wasn’t that long ago. Her tiny little tummy sticking out between her frilly little bikini top and ruffle swim bottoms. A bikini for a baby. Ridiculous, but the thought gives me a perma-smile for the next hour. The entire memory is shaded under a tan canopy, the whole area reflecting an odd blue glimmer from the hand-me-down kiddie pool.

pool

This picture doesn’t do it justice… I hadn’t yet acquired the shade tent – but that’s the moment I’m living in these days. A sweet, simple, moment of existence. It is beautiful and precious and something I am looking forward to this summer. It’s not warm enough yet, though I know my little sun baby is itching to throw on her swim suit and splash for the next few months.

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Writing is an incredibly therapeutic process for me. I intend to start blogging again, and not just about cancer. I want to write about how I’m decorating my bedroom, my favorite chili recipe and how I’m trying to incorporate more cultural heritage into our simple lives. These blog posts will not be sent out in an e-mail, as I realize most people did not sign up for that. They will still be available on my blog, but I don’t want to be spamming people. Future cancer updates will include links to other things I manage to post about – if I get there.

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I miss my hair. I am coming to learn that I am an incredibly vein person, aren’t we all? I’m ashamed to admit that often my moment of weakness is crying about my hair. Just for a moment, then I move on. Now the hair that hasn’t fallen out (maybe 1/5 of the hairs?) is growing and it’s just long enough to catch a little breeze every time I move. A constant reminder that there is no hair on my head. It’s a dumb thing to fret about, but it’s true. This isn’t an appeal for pity, rather an honest look at how I feel. I feel ugly. It sucks. I’ll get over it.

 

November 2013: I’d lost 20 pounds and was feeling fantastic. Life, in short, is not very fair.

I don’t hurt any more. That’s kind of a lie. I am still in a lot of pain, but none of it is pain from tumors. I can sit down for more than a few minutes without wanting to cry. That only occurs to me now as I’ve been sitting at the computer for an hour and the only thing complaining are my back muscles – weak from “going easy” on myself. I am thankful for that. It’s nice to be able to use my computer for more than a few minutes.

 

I’ve got a new ache. And its name is: bone pain. It is not a pain I would wish on any one. I am currently receiving a shot once every three weeks to encourage white blood cell production. White blood cells are made in your bone marrow. There’s only so much room inside of those bones. Hence: extra white blood cells and stimulation = bone pressure. If you can pinpoint where your thigh bone meets your hip bone, then imagine running all down down the beach…. and then running back home through a foot of water. That might start to give you an inclination of the soreness I’m experiencing. Hips. Knees. Shoulders. Lower back. I’m just a regular, old lady these days!

 

Cycle Four > Cycle Three. This cycle… all round… seems to be going better than the last one. I think I was dehydrated last time, which amplified the chemo symptoms. The bone pain came on very suddenly, and I am still tired, but I’ve yet to experience the bone-tired-exhaustion that left me so frustrated. I know, there’s plenty of time for that yet – but I’m trying to be positive.

 

Life doesn’t wait. There is always some new thing demanding attention, and usually money. Things like my computer hard drive that keeps threatening to die on me, or the sump pump that is failing to prevent the carport from flooding. You would think cancer would afford me some “get out of all other stress free” card, but alas… it does not. Thankfully we are well loved and months ago these would’ve been incredibly stressful things, now they are just things. Things that need to be taken care of, but they aren’t keeping me up at night.

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I don’t know how to handle my own good news. I know that “NED” should afford me some sigh of relief, and when I’m sitting with my sweet neighbors celebrating that news it feels real. Then I go home and it hurts to walk down the stairs and lifting a cup full of water has me wondering if I will yet break one of my favorite glasses when it slips from my tired grip. I still firmly believe Brandan is the reason we only have half of the original set. I’d like to say I feel relieved… but mostly I just feel tired. I feel almost like that PET scan has invalidated my suffering. I don’t feel like I have anything to complain about, despite having plenty of things in my life worth complaining about. It’s a very tricky head space to occupy. I need to be positive, and I have a lot of positive on my side… more than I could’ve expected. But here I am, looking a gift horse in the mouth.

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Soon enough though, it will be warm again, and the back yard will be calling our names. I’ll sit outside and knit, or read, while Ginny gallivants, muddy feet, bubbles in the air, and I’ll quench my achy joints with the cold hose water. I look forward to eating on the patio, using the fire place in the back, and listening to the birds all day. Basically I want to live in my instagram feed. Is that too much to ask?

March 21st, 2014

Chapter 11: My friend NED.

The sun had already set, while dusk accompanied by a hazy mist made the cold beach even colder. We’d spent the day on a bus, finally arriving at our hotel in the Normandy area of France. This was the second stop on our High School Band Tour. We had checked into the hotel, unloaded our stuff, then a group of us walked the two blocks to the beach. I’d never been on such a depressing beach. I slipped my shoes off anyway, because sand calls for toes to squish it. I watched as couples paired off, walking further down the beach as I took to finding a shell to take home. After a few minutes I found a bumpy yellow and brown mollusc shell. I tried to pry the two shells apart, but having been a nail biter my whole life I couldn’t get any leverage and the shells remained firmly together. Just then Brandan approached. I held up my  closed shells. “Look what I found!”

He held his hand out and I put it in his hand. “Yep, looks like a shell.” He shrugged then started to hand it back to me.

I scoffed. “Do you think there’s something in it?”

“Maybe.” He then started trying to pry the two shells apart. Suddenly I felt my heart drop as he yelled in pain and held his finger! I screamed for fear he’d been hurt…. and he started laughing.

I had really been freaking out when he revealed he’d just pulled a fast one… and had not in fact been bitten by a mollusc. Dumb-butt.

He handed me the two shells – empty – and I looked them over before handing one back to him. “So you can remember being a jerk to me.”

 

We still have those shells. One with nail polish dried inside of it hides in my jewelry box. The other sits in a vase full of shells in our guest bathroom.

 

This memory reminds me that the man I live with is not the man other people know – to them he’s funnier, more sarcastic, witty. But I have this one memory, before he was mine, that reminds me that he has not always been mine. At home, with me, he is gentle and cautious. He has slowly pulled me away from my overly sensitive self and taught me to have a broader appreciation for humor. Sometimes I forget he was ever not mine, because I cannot imagine my life without him.

 

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This is not the end of my cancer journey.

 

In fact, it is precisely the middle.

 

I still have three treatments. Nine weeks. I’m going to get sicker, more tired. More exhaustion, more nausea. But the end is in sight, and I have a new perspective.

 

 

Today I heard words from my doctor that I could not process. I spent the hour long drive home viscously vacillating between guilty pleasure and confused tears. I should be happy. This is happy news. Unexpected, blindingly happy news.

 

 

While going through the check-in process my doctor passed me in the hall. She smiled and said “Your scan looked good.”. I had seen the scan and responded “But there’s still something on it!”. She said we would talk about it in a minute and I went to let the nurse take my blood. My red count is still nominally low – that’s why I’m so tired. But nothing troubling.

Then Brandan and I sat in a room. It was kind of a weird room. The exam room had a couch in it… I called it the party room, for those patients who bring enough support to fill a couch. But it was just me and Brandan sitting there. Thinking now I don’t even remember the doctor examining me, but I’m sure she did. Instead I remember her words. It’s almost like my brain was taking in data and spitting out “DOES NOT COMPUTE!” over and over again.

 

On that scan… that picture right there on the right… there is no cancer. My scan showed No Evidence of Disease. NED.

 

Those black spots are my healthy, functioning kidneys. Due to the Neulasta shot parts of my bone marrow lights up, like my shoulders, but that is also not cancer.

 

I still have to finish chemo. There could still be cancer in my body, but it is so small that it does not show up on the scan.

 

A quick response to chemo means I’m more likely to have a complete, long-lasting, remission.

 

We left the office and in the hall the sticky, emotions rolled over me. Confused tears. Then smiles. Then more tears.

 

//Everything that kills me makes me feel alive.//

 

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For the curious: This is what the PET scan machine looks like.

 

Think of it like two donuts. I lay on that table on the left, the first donut is a CT scanner, then there is a space, and the second donut is the PET scanner. It takes about 30 minutes to scan my whole body, and it’s done in sections, about three inches at a time. I just have to lay still, listen to the mix CD Brandan made me, and wait. There’s a fan blowing nearby to keep the air moving, and taking my own music made the time go faster, since I could count the songs, think about the lyrics, and have that distraction. Last time I didn’t have my own music and had to listen to the instrumental music that was supposed to be “relaxing” but ended up making me feel like I was listening to the background music of a sad movie where a family’s dog dies. Depressing.

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I’m thankful for medical advances. Chemotherapy, though toxic, is an amazing, incredible thing.

I’m conflicted and feel guilty that it worked so well. Blame my guilty conscious – I feel like I haven’t suffered enough.

I have to remind myself: As much as getting cancer is not something some one can “deserve”, getting rid of cancer is not something that is “deserved” either. It just happens. Both of them.

I have been crying off and on all day because I could not have hoped for this kind of result. In fact, the night before the PET scan I told Brandan “I want to hope that it’s just all gone, but I know I can’t expect that.”. Then it happened, and I… I wish I could say I feel relieved. Instead I feel broadsided.

am excited. I promise. But of course, I’m still anxious.

I’m anxious because I still have 9 more weeks of chemo. I’m still going to feel like crap. Crappier than I have yet felt. It makes me nervous. It’s hard to explain how exhausting this is, and it’s infuriating. A week ago I was banging my fists on the table in anger over how tired my body felt, and yet I couldn’t begin to try and help you understand. It is not a kind of tired I’ve ever experienced before, but it’s the kind of tired that makes you want to lay down and never wake up, because you know waking up will mean feeling this soul sucking exhaustion yet again. Unfortunately this kind of exhaustion is complicated by medication that doesn’t lend itself to sleep. So I spent a lot of time laying in bed wishing I was asleep, unable to sleep.

Needless to say, I’m not looking forward to that.

I still need help. And love, and support, and now I feel guilty for needing it. I’m so thankful for all of the help we’ve received thus far, from help with our bills to the wonderful people who’ve brought us dinner and sent care packages. Each action carries me through the long days. And there are several more months of long days ahead. I’m at the 50 yard line of the football field of giant jumping spiders.

And lastly, I’m hopeful, but this isn’t over. I can see my life again, like the sun on the horizon… my normal life. The one where I have enough energy to spend the day with Ginny and not need to take a break or ask Brandan for help. The life where we spend every day at a park or the museum. The life that doesn’t involve doctors and blood draws every week. I can see it. I can’t feel it yet. I can’t count on it, and I don’t know when it will happen, but I can see it… and it looks good. 

 

 

Celebratory pizza!

 

 

March 6th, 2014

Chapter 10: darker nights

Update: We’re in cycle 3 now. I had my infusion on Wednesday, felt sick last night, but am feeling… okay today. My symptoms are relatively mild, except when they suck.

In other words, I’m tired all the time, and occasionally I feel really sick, but I’m mostly just tired. My nausea set in a lot sooner this cycle.

My infusion went smoothly. The nurse was willing to use the IV benadryl (instead of the pills), which actually resulted in less benadryl, and that combined with some caffeine allowed me to be awake a majority of the time. Some people say I should rest, but honestly… the steroids mess with my sleep schedule enough that if I can avoid naps and sleep at night, when normal people sleep, that is better for my family. I didn’t have any reactions, which is an improvement, and was able to finish an hour early.

At the infusion center. That thing on my chest is the port hook up. The area is numbed prior to insertion, so it doesn’t hurt at all.

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Thoughts

There are things that don’t escape my mind, they can’t. They are ingrained in my thoughts and how I see the world.

 

I have cancer. It is a scary illness that kills people. There is no shame in talking about having cancer. There is no shame in seeking treatment.

 

If I had diabetes I would have no shame in trying to share my experience, seeking treatment, or discussing preventative measures.

 

If I had high cholesterol would there be shame in taking medication? I doubt it.

 

But why then, is there so much shame in treating depression?

 

I’ve been writing my blog for 8 years. Eight. Years. Yet I’ve never mentioned my battle with depression. I was scared of what people would think, or how I would be perceived. But I’ve realized how helpful blogging through my current diagnosis is, and I hope that by rectifying my silence I can help others who are struggling with the pains I am all too familiar with. If you’re not interested in that, scroll on down to the bottom.

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I think there is a misconception that people are in control of depression. Unfortunately, we don’t actually have much control over our hormones. Just like cholesterol or diabetes can be controlled by diet, until they can’t. Being depressed is not labelled “depression” until it is something an individual is no longer in control of.

 

As a sophomore in college I felt like a prisoner in my cubical of a dorm room. With enough room for a twin bed and desk, I spent a majority of my time there. There – in my black hole. The place that pulled me away from things I’d previously enjoyed. The place I contemplated things that left me in depressed stupors. The place I contemplated what would happen if I disappeared.

 

I think the reason I’m alive today is because of my excessively guilty complex. Every day I walked over a pedestrian bridge, and every afternoon I walked over it again. I would pause and look down at the traffic, then continue to my black hole – it pulled me in. Then I would think: Jumping in front of a big truck would be easy. Instant. But it would be selfish, careless, messy. I’d be forcing a stranger to kill me, I’d be forcing my family to suffer. Motivated by that guilt for thinking such a selfish thought I’d wallow in hatred. So selfish. So dumb.

 

But aside from the guilt, I felt nothing. Numb, disconnected, alone, and at the best of times I felt outcast. Why couldn’t I connect with people? Why am I 20 without a single close friend or significant other to my name? Why am I constantly tired? Did you know exhaustion is a symptom of depression?

 

I wish I could describe what feeling numb really feels like. It’s like standing in the cold October rain with no desire to move. It’s like standing at the edge of the road, tempted to step too soon. It’s like forgetting that any one, any where loves you.

 

Months of the numb feeling went under my radar, I didn’t realize I was feeling this way. I did realize that I wasn’t feeling right though, and eventually this numb feeling lead me to cutting myself. Not in a “I’m trying to kill myself” way. But I want to feel… to feel anything. A physical representation of the internal pain. The pain no one else knew existed. Four lines on my body that kept me feeling human, in the sickest way possible. I’m very lucky – those scars have completely disappeared, and I am not constantly reminded of that lapse in judgement, that cry for help.

 

A few astute friends, who I’d dusted under the rug as acquiescence, rescued me from myself, from those hormones I didn’t control. In the process I likely ruined those relationships, something I regret every day. But they got me the help I needed. I was put on medication, which allowed me to learn coping techniques in therapy, and those techniques have since served me very well. I did have a relapse, but thanks to my supportive husband I was able to manage it quickly. And whose to say I won’t need that kind of help again. Heaven knows I have plenty of reason to be depressed.

 

All of that to say: Depression nearly killed me. Just like cancer is trying to do now. Depression kills people every day, and it isn’t something that should be hidden in dark lonely nights.

 

If this resonates with you, in a way that you know it shouldn’t: don’t be afraid to get help. Don’t be afraid to need some one, or to need medication, or professional help. We treat so many other illness with supportive communities, and depression should be no different. No one deserves to suffer alone. There is hope. Depression is not the end, it’s just the precarious stepping stone in the middle of the creek.

 

The problem with depression is that is skews reality, and leaves us alone and dependent on our own perceptions. When your brain is running on off balanced hormones the difference between reality and perception can be immense. The world is no darker or brighter today than it was 7 years ago, but my ability to perceive reality has improved immensely. 

 

I think people are often surprised by “how well I’m handling cancer”. I hear that a lot. Perhaps it’s because this is not the first time I’ve felt like my world was ending. Even more so, perhaps it’s because I know that I am still in control of myself. I can still see the beauty around me. In my snuggling toddler or my perfectly organized linen closet. The most helpful thing I have right now is steady support. The people around me are optimistic that I will do well. So despite my brain telling me I’m fighting a losing battle, I realize my perception is far from reality – and I can adjust. Like I’ve said before: it’s easier to feel positive when the sun is out.

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More thoughts:

I’ll have my PET scan to check my progress in about a week and half.

I’m scared of what that scan will show. My cancer turned asymptomatic before I started chemo, so I have nothing to base my progress on. I can’t feel my tumors. I just hope they are dying.

Some nights I lay in bed and wonder if I’ll get to see my daughter grow up. Those are scary nights.

My doctor said I’ve likely had cancer for years. Follicular lymphoma that transformed into this aggressive form. The numbers for this are not quite as hopeful – not exactly terminal, but not 90%. It’s also scary to look back and wonder how long I’ve had cancer for. How much sooner could I have done something? How much of this is my fault?

When I get upset, I mostly just feel mad. Mad at this stupid senseless illness. Why can’t my body just work like it’s supposed to?

 

Some days I think I might be getting depressed again. It’s not like that would be surprise – there is definitely something in my life worth being depressed over. But I can’t linger there. So instead I clean my house. It keeps me busy when I have the energy, and gives me something to feel accomplished over.

 

 

 

 

February 16th, 2014

Chapter 9: I’m not a child. (C2D1)

We would meet at the “club house”.

I use that term loosely. My family resided in a quaint duplex on a Royal Air Force base in England. I’ve found it on Google Maps. It’s quite cute. One street of houses, a community building, a big warehouse, a huge empty field, two large empty parking lots, a giant hill, then the enlisted housing complex. This was my playground. Never mind the playground at the end of the street. The whole base was my playground. And on the easternmost edge of that gigantic field sat three spindly trees and a bush. That was our club house. We’d taken out a rope, a bucket, and some one had pilfered a towel at one point. So we had a pulley to move things up to the one person who could sit in the tree (it wasn’t really a good climbing tree), and a flag. During the winter it was a dismal clubhouse, no coverage. But during every other season the bush arched up into the trees creating a nice little safe haven. We’d tie our bikes horses up to the trees, then putz around trying to save the world. Like any kid. 

 

I don’t know if my memory is one day, or many days combined into one, but it stands out. I’d tucked a piece of chalk into a paper towel, then put that into my pocket like always. Pulled on my blue wellies and matching parka, then tossed my bike over the back fence. It was easier than taking it through the house and felt like a secret rendezvous, like no one would know my trusty steed was waiting around the corner. I walked to one Leeann’s house, and we went out her back gate to get our bikes. So stealthy. Then we were off, in all our equestrian glory. Around the cul-de-sac, then out the other side of the road that would dump us in the field. 

 

Leeann and I had become fast friends when she moved in. She and I went to the same school, were the same age, and lived three houses away. Unlike most of the similarly aged kids on my street she was actually British. The other kids were all American, and either went to the school on the US base or went to private schools. I once had “tea” at her house, after which we played a rousing game of Monopoly on the N64. I don’t know why that matters. 

 

Some days we’d take the chalk and draw out elaborate houses on the black top, complete with stables and “courses” for our horses to run. Some days we’d go to the community center. It seemed abandoned, but  Leeann assured me we had permission. It was unlocked – so I didn’t question it. I could see my backyard from the building. But this day, this day was a new adventure. We were going over the hill.

 

In any case, I was unaware that behind the giant hill that sat the large fields  was another housing development. There were other kids on my bus, but I was the last to be picked up, and the first to be dropped off. I didn’t know the rest of the route.

 

So we set off on our bikes, across the mushy field, the air hazy with misty rain. Then the empty parking lot, our house from the previous day already washed away by the constant wetness. Then the next lot. We were speeding, trying to get enough momentum to get up the grassy hill. I could feel it in my knees, but not the way I feel my knees now. In that beautiful way when everything is working and doing what it’s been designed to do. Now my knees ache just thinking about pedaling that hard. We didn’t make it up the hill. In fact, we had to leave our bikes at the bottom as we physically climbed up, grasping at rocks to try and keep from slipping down the muddy side. The other side was easier – with long unkempt grass holding the dirt in place. We ran down the hill, feet thudding as quick as my heart. I hadn’t asked permission to go this far. I hadn’t thought this through. 

 

The other side of the hill felt different. Instead of the bright painted red and white garages there were rows of apartment buildings on the other side of a much smaller field. In my childish mind none of the scale mattered, I didn’t know the difference between an officer and enlisted person. Leeann pointed off the left – and I realized why we’d come this far. Unlike our side, this side had a shop. My mind raced back to my bike. I’d just left it there sitting at the bottom of a hill, not tied to anything. Then I thought about my parents – I’d not even known where I was going to ask permission. But it was too late to turn back. Leeann turned to me, “Did you bring any money?” I nodded. There was a little shop by my school and when I stayed after for lessons I would sometimes go there. 

 

Walking into the little shoppette I could feel my cheeks growing pink. I shouldn’t be here, I shouldn’t be here. My guilty conscious has existed for a very long time. On one row I saw two boys from my class. I didn’t know they lived so close. I smiled but avoided them. Being the only American at my school left me open to more than my fair share of teasing. Thanks to a certain president’s personal relations at the time certain children heard parents’ choice words about said president, which translated to me being called “Skanky Yank” a lot. Thankfully I was willfully headstrong and responded with that year’s “When I grow up” presentation featuring me as the president. But I digress. I walked around the four aisles, finally selecting a lemon fizzy drink and a three pieces of chocolate from the bins at the front of the store. I set the things on the counter in front of the teen-aged store clerk and waited. “Fifty-two pence.”

 

I pulled the coins out of my pocket, and felt my heart sink a little. I pushed one chocolate aside. “I only have forty seven pence.” He fished four pennies from his own pocket, adding them to my change, and then bagged up my purchased. As he handed the bag to me he paused, then threw in a brightly wrapped bubble gum stick from a bowl on the counter – another two pence I didn’t have to give him. I felt my cheeks redden and I thanked him before making a bee-line for the door. Leeann joined me moments later and I told her of my conquest – free gum! Climbing the grassy hill was hard, and I’m certain we ended up muddy coming down the mowed-side of the hill. But it’s a memory seared into my brain. Lemon fizzy drink tastes kind of like soap. In a weird good way. Cadbury chocolates melt differently in England. Wet air smells like wool, wet wool, to be specific. It’s a scent that fill your lungs, just to be chased with that soapy lemon flavor. I didn’t ever go back to that shop. It wasn’t mine. Plus I didn’t have any money. But it wasn’t meant for me. I had my fields, where my bike could be a horse and chalk was enough to create an entire mansion – and it was wet, and beautiful. That was 15 years ago.

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I don’t think people do it on purpose. I don’t think they are trying to be patronizing, or hurtful – maybe it’s even meant to be a compliment. My age. Like a number can define a human being so completely. “Only 25.” You see, my age is always accompanied by the word “only” because I am on average 10+ years younger than most of my peers.

But I’m over the number. The number doesn’t matter, and I feel like experience wins out. My two years as a mother are just as valid now as they would be if I’d waited. My experience buying a house is valid. I’ve worked, though not as long as some, as a professional in varying fields. I’ve performed at Carnegie Hall, bought a number of cars, filed my own taxes, gone to the movies by myself, painted my dining room, changed the filter in my AC system, the list gets more boring and even more mundane. I’m doing the same things all the grown-ups are doing, and yet somehow I’m not an adult.

Here I am doing the same mundane things, and faced with the reality of mortality. So I’m just going to put it out there. I’m an adult. I’m not “only 25″. I face the same fears for my family – if not more so. I face the same fears financially – if not more so. And I face the same challenges every day – if not more. Because not only do I get to do normal adult things, but I get to do them while I have cancer.

It’s not that I want to be old or waste my youth. It’s that my life is not trivial because it is not as long as someone else’s.

Plus, I’ll be 26 in a few weeks. Boo-ya!

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Medi-port hooked up and ready to go.

We are in Cycle 2 now. Last Wednesday I went back to the infusion center and unlike my first cycle that was drawn out over four days, all of my infusion was done on one day, then I had to go back Friday for the Neulasta shot. We arrived early, and honestly – the day is a blur. I didn’t have any reactions to the chemotherapy drugs, but the benadryl really did a number on me. I hate that feeling – it’s too close to numb. A forced tired that I’m not in control of. With so little in my control, I cling to what I still have. Getting to be awake for a majority of the day is one of those things. So I was in and out of consciousness, but mostly I just rested while Brandan clacked away on his laptop.

Then I went home.

It was very boring. I slept the whole time.

My side effects have been… different. The first cycle we worried about tumor lysis. Ie.: too much tumor dying too fast and clogging up my kidneys. That was a painful process, as massive cell death is understandably painful. I’m not having so much of that pain this time around. Unfortunately – I am dealing with some nausea. It’s not the worst. I don’t ever feel like I’m actually going to throw up… just very close, so it’s nicer than morning sickness. I also have medication to help – another “win” for modern medicine.

I’m not out of the woods yet, last cycle my “peak” worst day was day 7, which is coming up soon. My Mama is gonna come play Mama for me in anticipation of that difficult day. Having family nearby makes this a million times easier than it would be if we lived anywhere else.

A warmer hat as we packed up to leave. :)

 

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And I guess one more side effect: I’m hairless now. I had cut it, per my last update, as my hair had started coming out in handfuls. It was good to cut it, and I’m glad I did. I kept a hat on most of the day, then spent 20 minutes in the evening pulling out piles of hairs. Within a week I was down to what I like to call “Grandpa hair”… as it was even but sparsely distributed over my head.

Quite possibly the most attractive photo of me yet! Right before I let Brandan cut it all off. Ginny was informing me of how silly I looked! Go figure!

 

It was bad. It looked bad. It was making me feel bad. The hair needed to go. So we just cut it off. We planned it out, and had Ginny there. I cut Brandan’s hair like usual (those clippers have paid themselves off at least 3 times and we’ve only owned them for 10 months!), then as Ginny and I laughed at my silly hair we said it was Mommy’s turn. She has handled it really well. I think the sparse hair was scarier for her too. She commented a lot on it, telling me how silly my hair looked. Then she’d nuzzle into my chest and tell me how pretty I am. She’s very perceptive. Now with the hair gone she doesn’t comment on my hair at all, though she’s still telling me I’m pretty. I’m not sure where she picked that phrase up, perhaps from my sweet husband, I’ll take it.

 

 

Mostly bald with a weird hair tan line!

 

Yesterday I saw a picture of someone’s child and I became irrationally angry. I was angry at the kid’s mom. Why does she get to feel safe in knowing she’ll see her children grow, while I cry myself to sleep wondering if I’ll even see the next ten years. When my daughter climbs on top of me and says “I love you too Mommy” – her half of the phrase – and I can’t help catching my breath to stop the catch in my throat as I respond. “I love you baby.”. I’m trying to embrace what I have though. And really, what I have is more. My numbers are real. I don’t need to worry about dying in a car accident or some other catastrophic occurrence. Not that those don’t exist for me, but they don’t matter. Instead I get to know that there is something trying to kill me now. It’s oddly beautiful, knowing and not knowing. It makes me cherish every second her sweet little body is pressed against mine. She’s being forced to grow up too fast. I’m ready to be done with cancer so we can resume our exhausting trips to the library and conversations that don’t have to do with Mommy’s tummy hurting or her hurried words of comfort. She shouldn’t have to comfort me.

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  • I acknowledge that my problems don’t make any one else’s problems less valid. This is important. At the same time, if you yell at your kid in the grocery store because you expected your two year old to sit perfectly still with no entertainment for an hour then I probably want to shake you.
  • My mom made me cheesecake for Valentine’s Day.
  • My life feels more in order than it ever has before.
  • I ache for a time when I can just think about the future without adding an obligatory “if” to the front of my thoughts.
  • There are 3 inch Jessica hairs all over my house. Everywhere. It’s annoying, but not as annoying as finding the long ones.
  • I’ve lost some ability to multi-task. I can’t listen and think. I can’t hold two conversations. Part of this might just be stress, but it’s frustrating.
  • I am tired of being tired.
  • I selfishly love the extra snuggles I get from Ginny when we watch a movie in the afternoon so I can take a nap.
  • I’m over-the-moon thankful that Brandan can work from home through all of this.
  • I cry every night. Some times before I go to bed. Some times in a weird wakeful period that haunts my nights. Too early to be awake, too late to take more meds. My brain starts thinking, and it’s hard to shut off again.

 

It’s hard to label this experience. It’s not easy, but it doesn’t feel hard. It feels unfair, like in elementary school when the kid in front of you takes the last pepperoni pizza slice. Those square slices. There’s nothing to be done, nothing can be changed, you’re stuck with cheese pizza. Until next Friday. So here I am, just waiting for another pizza day to roll around. Another day, months away, where everything will be fine again. But in the meantime, cheese pizza will suffice. At least I have something. I’m not sure what pizza represents – some grand scale model of what life is, and what life should be? Or what I want life to be? Or maybe just what I think I deserve in my life. And if that last one is the case, then I would gladly settle for cheese if it means I get to have a million more Fridays. I am happy, because my life – all 25 years of it – is amazing and full of good things, and good people. I have everything I need, and more.

 

February 6th, 2014

Chapter 8: do what’s right for you

Mine. The tiny newborn snuggled up on my chest was mine. Her smell was intoxicating to me – sweet and milky. Her sweaty little cheek smooshed against my sternum as her even, hot breath on my skin indicated she’d fallen asleep. My brain contemplated the options: hold her, and let her become accustomed to sleeping on me, or put her in her crib. The books and most of the internet are in favor of the latter. Encourage independence, let them sleep alone, teach them early to put themselves to sleep.

“Brandan, I don’t want to put her down.”

My husband looked up from his work with confusion. “Okay… then…don’t?”

“I probably should though, or she’ll never learn to sleep on her own.”

He considered this logic, then shrugged. “She won’t be sleeping on your chest when she’s in college.”

I laughed. Great. “I can probably handle this for 18 years.”

He smiled at us. I wonder what we looked like to him, my messy hair and tired eyes, her pink cheek glued to my chest.

“She’s your daughter. You can hold her if you want to.”

I considered his words, nodding my head. I didn’t get up and rush her into a crib in a room by herself. One hand under her tiny little bum, the other gently resting on her tiny little back. He was right. She is mine, and I can hold her.

 

Week old Ginny

 

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It’s weird to think I needed permission for that. I needed permission to choose how to parent my daughter. I didn’t have to listen to what my friends or family thought was best, or what books thought were best… in fact… considering the circumstance, I knew what was best. This experience grew into the motto that got us through the first year of Ginny’s life: We do what is best for the whole family. And you know what made me happy and got my growing little girl more sleep? Me holding her. And now that I look into my future, unsure of whether I will ever be overwhelmed by that intoxicating smell again, I am thankful for every second I held her in my arms. Every. Single. Second.

 

Let’s talk about prognosis.

 

There are two ways to look at it. The way most people look at these numbers is “Wow, those are great numbers!”. Then there is the way I, and probably my husband, look at these numbers. “Wow, I shouldn’t have to worry about these numbers.”

SURVIVING DIFFUSE LARGE B CELL LYMPHOMA

The chance of surviving DLBCL depends upon many factors. The following factors are known to reduce the chances of survival:

  • Age older than 60
  • Lactate dehydrogenase level higher than normal.
  • Stage III or IV disease 
  • More than one involved extranodal disease site

A scoring system, known as the International Prognostic Index (IPI), gives one point for each of the above characteristics, for a total score ranging from zero to five, representing three risk groups [1]:

  • Low risk — IPI score of 0 or 1 (91 percent of people in this risk group are still alive at three years)
  • Low to intermediate risk — IPI score of 2 (81 percent of people in this risk group are still alive at three years)
  • High to intermediate risk — IPI score of 3 (65 percent of people in this risk group are still alive at three years)
  • High risk — IPI score of 4 or more (59 percent of people in this risk group are still alive at three years)

So looking at that first list, I am younger than 60, my lactate dehydrogenase level is normal, I am in generally well health, and only my lymph system is involved. I am Stage 3 though, so I have one negative factor. That puts me at low risk. So there is a 91% chance I will be alive in three years.

 

Just typing that pisses me off. I shouldn’t have to divide my life into three year segments.

 

But < sarcasm> lucky me! < /sarcasm> I have other numbers to think about. Because it isn’t just about beating cancer the first time. 1/3 people with this disease will relapse. Most of the recurrances happen within two years. A recurrence is typically considered fatal and turns into a management scenario, as it is nearly impossible to cure at that point.

 

So that’s what I’m facing. With all likelihood my cancer will be gone (or… mostly gone… another terrifying scenario) before my daughters birthday. But then I have a 33% chance that the cancer will come back. Right now we are doing short term planning. What will we eat for lunch? What will we do this weekend? Do I have enough energy to do the dishes? I can’t think about next week, or next month, or even next year. But I’ll get there, and then I will have more mental gymnastics to conquer. When can I think about two years from now?

 

When can I start just living my life?

 

When can I think about having another child? This information would’ve been exciting, but we had planned to start trying for another child this summer, after Ginny’s birthday. That plan is gone. It’s not even in the same room as the table. Do I wait a year? Do I wait two years, which is when most relapses occur? Maybe five years. Supposedly 97% of recurrence happens within 5 years. But will I want to have a child then? Put my body through pregnancy at that point? Will I have enough energy for a second child?

My life plan is out the window now. It’s just a bunch of questions I can’t answer anymore. My life plan is the most basic of plans: live.

It’s easy for some one else to look at my life and say “You can’t let this control your life.” And you would be right. I should, but I think it impossible for people to understand how paralyzing these numbers are.

If you’de like to read some of the data that leaves me feeling sick to my stomach, click here. Then imagine those numbers are your life.

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My fingers hover over the keyboard. How much do I write? How much do I explain? How much is worth explaining?

 

Thanks to the support and encouragement of my sweet neighbors I sought a second opinion from Dr. Elaine Jaffe at the very beginning of this journey. She is the leading Lymphoma pathologist/researcher at the Center for Cancer Research, National Cancer Institute (which is a part of NIH). Despite the debacle with my first oncologist I received a personal e-mail from Dr Jaffe with my results (which I forwarded on to my new and improved oncologist).

It’s a lot of information. I read it, then re-read it. Then I google something. Then I read it again. I guess I’ll share what I understand:

Diffuse Large B-Cell lymphoma is a mutated form of Follicular Lymphoma. Less than 30% of Follicular Lymphomas transform into Diffuse Large B-Cell. So that’s interesting.

I’m still trying to figure it out. Apparently my FISH score being negative is a good thing though. Who knew?

 

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My doctor appointment today went well. Blood draw, weight (still the same), review of blood work (good), a little tummy massage (nothing special), and my vitals are fine. I’m clear to start my next cycle of chemo next Wednesday (Feb12).

On that note, I start chemo again in one week.

My hair has started falling out. I spent two days collecting it in little balls, ten strands at a time. It was kind of therapeutic. I’ve been waiting for real side effects. It sucks to lose my hair, but it means the chemo is working. I see that as a good thing.

I got my haircut on Wednesday. The long strands are messy, and will clog up my drain. The short strands blend in with the dog hair. My brain likes that.

  

 

 

 

 

 

 

 

 

 

 

 

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I am doing better than I expected.

I’m trying to stay positive.

I’m sleeping better.

Some nights I cry myself to sleep in Brandan’s arms.

Sometimes I think I can contain the bad things to the night, and then I have to face reality and do scary things during the day.

Ginny keeps telling me my haircut is pretty. Then she says “I love you too Mommy.” I love you baby.

 

 

January 31st, 2014

Chapter 7: Expectations

This story is about my wedding night. It is safe for work.

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We were covered in glitter.

It had been a beautiful night, until the moment I was covered in glitter. The sinking in the pit of my stomach the moment I realized that my sisters had been unsuccessful in guarding my car still makes me feel sick. Pulling away from the chapel I could feel my cheeks burning red despite the rolled down windows. Brandan’s wedding night surprise felt ruined as we peeled out of the parking lot. That sound is stuck in my head, it was an accident since Brandan had very little experience with the manual transmission in my little car. We drove with silence between us, just the clang of the metal cans behind our car filling our ears.

“Pull over please.” My voice shaking as I tried to contain something between anger and crying.

We pulled into a nearby neighborhood and in my heels and get-away clothes I laid down under the back of my car and tried to cut the cans off with the edge of a key. It took five minutes, the Virginian August humidity still hanging heavy in the dark, the sweat just making the glitter stick and itch. Brandan moved to the passenger seat and I threw the cans in the back of the car. The knots where still on the back of my car when I sold it last year.

“I didn’t want this.” I didn’t really care about the cans, I was referring to the copious amounts of glitter that would forever be ingrained in my car.

“I know, I’m sorry.”

 “Now I’m just upset and I shouldn’t be upset right now.” My voice sobbing. I took a breath then threw the car in reverse, backing into a strangers driveway to reorient myself with the main road.

“I know, I’m sorry. Just breathe.”

And I did.

“Turn left.”

Brandan pulled out a piece of paper with directions to the hotel. He’d been teasing me with it for weeks. I didn’t know where we’d be going for our wedding night. It wasn’t like Brandan to surprise me, or keep things for long. But he had. I didn’t know where we were going, and he apparently did not either.

“Will you just tell me where we’re going now?”

He didn’t say anything until the next direction. “Just keep going through this light.”

“Why would Chrissy let them do that?” Even his surprise couldn’t distract me. “We have to drive to Tennessee tomorrow. We have to drive with the windows down. All of our stuff is going to be covered.” Forget our stuff – we looked like we’d come from a strip club. 

About five minutes later we pulled into the parking lot of a historic bed and breakfast in old town Fredericksburg. I looked over my shoulder at the hotel, the lobby dark as it was almost midnight now. I felt nonplussed. “I’m sorry I’m in a bad mood.”

“It’s not your fault, let’s just go in.”

The bells rang as we pulled the door open, but there was not a person to be seen. We carried our two bags and a cooler my maid of honor had sent along with snacks. Up three stories worth of stairs and down the blue carpeted hall we found our room on the right. Brandan pushed the door open and reached in to turn the light on. It was lovely. Antique bedroom furniture in the first room, a claw foot tub in the bathroom, and a second sitting room with similarly beautiful furniture. Brandan smiled, a little pride coming through. “I thought, ya know… since we’re both into going to historic places… I thought you would think this is cool.”. I nodded. “This is the Stonewall Jackson suite.” And sure enough, the walls were dotted with drawings of Stonewall Jackson.

Still covered in sweaty glitter we decided a shower was in order. A sign in scrolly font informed us that because the pipes were old it could take up to five minutes for the water to heat up.

In hopes of clearing my mind Brandan and I took separate rooms. Closing the door behind me, I opened my small bag on the couch, then turned to the vanity in the corner. My make-up was badly smudged; it looked like I’d applied a whole bottle of mascara then rubbed my eyes. My cheeks were still red, and my hair was frizzy, a halo of humidity-induced tendrils going every which way. 

What a mess. It shouldn’t be like this.

I spent the next few minutes cleaning the make-up off, not wanting to look like a banshee fresh out of the shower. Water-proof mascara is a fickle friend, but with that situation under control I could move to the next task at hand. I opened the door to the bathroom, took a deep breath of the hot steam, then knocked on the door to the bedroom. Brandan opened it, church slacks and a white t-shirt, glitter and blushed cheeks to match mine. I don’t remember what was said though, because seconds later the smoke alarm went off in our room

We hadn’t realized that it was the steam setting off the alarm (true story) so Brandan opened the door to the hallway. Within minutes the hall alarm was going off and other people were coming into the hallway. Brandan acted confused – though I’m sure it was not acting – while I pulled the small cooler from the corner of the room and grabbed my shoe. Standing on my tip-toes on top of a cooler, waving my white patent leather pump at the smoke alarm mounted at the top of the 15 foot ceiling, covered in glitter. This is not what I wanted.

 

The alarm shut up after a moment, the hall way emptied quickly, and my husband of less than 12 hours re-appeared. I showered alone, antique furniture is loud and non-conducive to wedding night activities, and sleep beckoned – knowing we had an 8+ hour drive ahead of us the next day.

Stonewall Jackson on his deathbed, Brandan being a goofball.

The next morning I signed the guestbook. “Sorry for the glitter, the Reeds.”

This night should’ve been many things. It should’ve been a beginning, a hallmark for the rest of our lives. But it wasn’t. If anything I want to forget it and pretend that we left for a week long honeymoon on an island. Instead we drove to Tennessee so I could start school two days later.

I’m still mad about the glitter, and his family still thinks it’s funny.

But it taught me an important lesson: it doesn’t matter.

None of it. Easily one of the worst nights of my life and it doesn’t matter. It doesn’t matter because it didn’t mean anything. I get to choose what has meaning in my life. I was already married – the end of the night didn’t change that fact. I have a husband who loves me and can forgive me for behaving so selfishly in my anger. I can write it off as a lost, a funny story to tell, and truth be told I ruined the night as much as the glitter did by letting it bother me. My sweet husband – the only thing that matters from that day – has inadvertently turned me into a far less self centered person. It’s a nice feeling.

I feel so grown up.

For the record: there was still glitter in the civic when I sold it.

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In my house I have this piece of artwork I made when Ginny was a newborn.

 

I have everything I need and more…

 

I walk past it a million times a day, but today I saw it.

I need to remember this now, more than ever.

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Health Stuff

I don’t have cancer in my bones! In honor of that announcement, this song has been in my brain as I waited on those results.

<Tiësto feat. Tegan & Sara – Feel It In My Bones>

For clarity: I have Stage 3 Diffuse Large B-Cell Lymphoma. I have a bunch of tumors just under my diaphragm, and one in my chest under my right clavicle as well as preliminary involvement in several different sets of lymph nodes in my chest. Doesn’t matter, having chemo any way. Chemo doesn’t pick and choose what to kill.

My side effects are currently minimal. I’m tired, I’ve had a few headaches, a few weird pains, lots of heart burn, but…honestly… it’s no worse than being pregnant (I had a pretty easy pregnancy).

Tuesday was my bad day. I woke up with a headache, nausea, and back pain that lasted all day. Then it was gone. I don’t have a lot to complain about.

We did a Chemo class this week, and got to consult with an oncology nurse. She said that symptoms tend to stay the same, but they get worse with each cycle. So thus far my cycle is: normal, normal, slightly uncomfortable, uncomfortable, bad day, uncomfortable, normal, normal, normal…. all things considered I literally have nothing to complain about.

Today I did lots of normal things. It was beautiful.

I’m still going to lose my hair. I’m okay with that.

So overall, I’m good. I feel loved. Our fundraiser is moving along and the stress associated with the cost of cancer is going down, little by little. After weeks of stressful waiting that felt like torture, it’s nice to sweep the floors, do the dishes then go shopping for large quantities of toilet paper. Life. Plain, old life.

January 28th, 2014

Chapter 6: The things we don’t talk about.

I could feel my cheeks blushing as I walked between the clothes racks, a simple black saddle bag grasped in my hands. It was a Tommy Hilfiger bag – one of the few brands sold at the tiny PX on base in Germany. I didn’t really need it. It was a silly thing to ask for… but I wanted it. I showed it to my Mom, “Could I get this?”

“Not right now, why do you need another bag?”

She was right. “I don’t need it… I just thought it was cool. My backpack is kind of big, ya know?” I’m sure I scrunched up my nose. My face does it without me thinking. “Never mind.” I shrugged it off, and walked back across the square, tan linoleum making a sticking sound with each step, hanging the bag up where I’d found it.

As a child, or youth even, I tried to not ask for a lot. I had plenty, more than I could have ever needed – though never to the point of excess. Except maybe our American Girl doll clothing collection. But considering the time spent playing with those things… I digress. I’m the child who asked for a new blanket for Christmas. Not because I needed one, but because I thought those woven cotton blankets we’d used before our household goods arrived were mighty comfortable. And asking for that bag, the moment I did so, is stuck in my head forever. My mom ended up going back to the PX and buying it for me, I later received it as a birthday gift. I still have it too. Before Ginny it was my go-to day trip bag, the front now spattered with pins from English castles. I love it, and I love it because my Mom bought it for me, but it cause a twinge of guilt in me, ever 10 years later. It is a thing I own for the sake of owning it, and not because it fulfilled a need.

 

Brandan and I have been very lucky. In the last six years we’ve both graduated college, purchased cars, and purchased our first home – all without acquiring more debt than required. We’ve made mistakes for sure (don’t, for the love of God, buy a Jeep… my mother warned me, but I was bent on owning that Jeep), but we’re young and learning. We’ve budgeted, but no one budgets for cancer. Which gets me to where I’m going:

Cancer is expensive. Even with insurance.

Because even with insurance medical care in this country is exorbitant. Because curing cancer requires specialized treatments. Because money is a finite resource and life doesn’t stop when you have to pay for cancer.

Because even with insurance we get bills like this:

Rituximab is one of 5 drugs. This is the bill for one dose. One dose of one drug that I will need 6-8 times to cure my cancer.

This is one bill. One bill, from one day, with just one drug. In the last three weeks I’ve had 2 CT scans, 1 PET scan, 3 CT-guided surgeries, and a handful of doctor appointments and blood draws.

We’ve applied for financial assistance through the drug companies and the Leukemia & Lymphoma Society. People are always quick to point out that we do have an out of pocket maximum through our insurance. This is true. Technically, for everything insurance chooses to cover, we should only owe $6000. This year. And when the cancer is gone, hopefully in six months, I will have to watch for it. I will have to get a CT scan every 6 months for two years. When you add all of that up you get $6000 this year, at least $6000 the next year, and another $6000 the year after that. In CT scans alone.

 

So when I post the link to my fundraiser, know that it is not something I’ve decided to do lightly. Asking for help, and especially monetary help, is not something I’m fond of by any means. Just writing this my cheeks are pink and hot again.

 

This is a long-term disease. Even when it’s gone it will still be hitting out pocket books. Every $5 helps. When my friend first created the fundraiser page and my phone was dinging every 10 minutes, I got all mushy and little bits of stress started melting away. Every time it gets shared, and a name I don’t know shows up in my e-mail, I get all mushy and little bits of stress continue to melt away. I have a mountain of stress, and slowly, little by little, day by day, it’s melting away.

So this is a link to my fundraiser:

giveforward.org/oneshinystar

 

I know so many people have already donated, and like I said – every cent is greatly appreciated. If donating isn’t your thing, please consider sharing the link. E-mail it, share it on facebook (feel free to tag me if you post it), send your friends here to read a little bit about our family’s current journey, and know that when we feel like this is the end of the world our friends are constantly reminding us that I don’t have to run through that field of jumping spiders on my own.

 

Thank you.

January 25th, 2014

Chapter 5: queezy

I’d imagine he was nervous when he asked me, though I don’t remember the exact moment. Was it in person? No… it must’ve been in a note. I would’ve felt obligated to answer immediately if he’d asked me to my face. But I can imagine the note. His paper was smoother than mine. I still have stacks of notes we exchanged in high school, tucked away in a little wooden box. Selfishly. His handwriting stoic – can handwriting be stoic? All capitol letters, but the corner of his E is rounded. He would’ve handed it to me, like we did several times a day, in the hallway as we headed our own ways. I’d save it for the bus ride.

By the time I got home I felt jittery. It came out of nowhere. Why would… who… what would make him think I wanted to go to prom with him? I decided it would be best to nip it in the bud, and typed up a quick e-mail. I mean, prom is serious business and I didn’t want to send the wrong message. Three minutes and a mouse click later I’d told Brandan that I liked him as friends but that I couldn’t go to prom with him.

Phew. I could feel my heart racing though. Maybe I should call him? I must’ve looked weird, because my mom confronted me.

“Brandan asked me to prom.”

She was busy in the kitchen, and didn’t turn to look at my mess of teenage angst. “That’s nice, are you going with him?”

“I… no… I didn’t think I should.”

Glancing over her shoulder I can see her smile. “It’s just prom, and it’s fun to go with some one. Why wouldn’t you want to go with him?”

Valid points. Except… “just prom”? What do mothers know?! But she was right – it would be more fun to go with a date. After dinner I got back on the family computer, my Dad sitting at the desk to my left. Brandan has already responded to my e-mail with an ever polite “I understand, I hope this doesn’t make things awkward.”. 

Of course.

So I typed up another e-mail.

“I’ve been thinking about it, and if you’re still interested, I think I would like to go to prom with you. Sorry for making things awkward.”

 

And then I waited.

 

And then the next day I panicked. When I saw him at school he confirmed receipt of the most recent e-mail. He hugged me. It felt too comfortable. This is my best fried – literally the nicest person I’ve ever met – I can’t lose this. “I can’t go to prom with you.”

He stepped back and looked me over. “Oh… okay.” I could feel the heat rising in my cheeks.

“We can still… hang out… I just don’t want to go together.”

“Can I ask why?”

The panic. I didn’t have a good reason. I mean… I had reasons… just none that really warranted the emotional whiplash I was putting him through. I think, though my brain seems to conveniently block it out, that I blamed my mom. The irony is not lost on me.

He was naturally gracious about it, and really I saved him having to pay for my ticket, dinner, and a corsage. (You’re welcome honey). 

We spent most of the night hanging out together, and I kick myself thinking about how dumb I was. But my sweet husband has never broached the subject. It’s a blip, gone, a small bit of humor from another lifetime. We’re so different now. Still perfect, still compliments to the other, but so different. I like to think I’ve made him into something – but in reality he’s changed me. He’s calmed me, he’s taught me to have a sense of humor, to relax, to let go of what doesn’t matter, and only hold onto what does. He’s taught me to be happy. 

_________________

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Cycle 1 Days 1-5

My week was uneventful. Tuesday I had the chemo, Wednesday the Rituxan – with no reactions, then Thursday was IV fluids to help flush my kidneys and a white-blood-cell booster shot, then Friday was just IV fluids.

My side effects have been minimal thus far. My intestines have complained a little, heartburn is my new best friend, and I occasionally get aching pains in my abdomen. The weirdest side effects have been some occasional numbness in my arm. Being a sign language interpreter lead to a small amount of nerve damage in my right arm, and the treatment is known to agitate nerves. So that’s explained. My only other weird side effect is that sometimes my eyes get fuzzy. It doesn’t last for more than an hour, but when it happens I can’t focus my eyes enough to read things at a distance. As some one with 20/20 vision… this is unsettling to say the least.

Today was my last day of prednisone – the steroid part of my treatment.

I have a feeling this are about to get worse. Today I was at about 70%, and we got a lot of tidying up done around the house. Tomorrow I will not have the drug-induced energy to propel me through the day.

I’m hoping it’s not a long day.

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I’m not sleeping well. Drug induced sleep is never as refreshing, but my body is convinced that three hours of sleep sounds “juuuust right” and I wake up more awake than I’ve ever awoken.

I’m not a morning person. That’s just a PSA.

I am spending purposeful time with people. I love it. I keep reminding myself that all of the good things in my life still exist, there is just a little more bad involved now. I can’t lose sight of that.

For a while I was feeling depressed, or robbed, like things had been taken from me. And surely I will lose things. Things like the way Ginny reads books with Brandan – she just listens when I read them. Or being able to take care of Brandan when he’s sick too because I love him and just want him to be healthy. I’m missing out on my errands, Ginny’s tumble time, and craft projects, and just washing the dishes without feeling tired. I’m missing out on every day life, but thankfully my life still exists. It’s waiting for me, and willing to take what I can offer. 

I’m anxious to feel something. Not that I want to feel miserable, but at least if I felt miserable I’d feel like my body was accomplishing something. Instead I just feel crummy, with the nagging idea that maybe if I don’t have symptoms that means it’s not working (this is apparently not true, but my brain still thinks it’s worth stressing over).

I’m loved. I keep falling back on this. I am overwhelmed everyday by the amount of love I’m getting. My family has been fed, though I’ve not had the energy to do it, and my phone is often flashing at me to tell me some one is thinking of me.

I hate cancer, but I still love my life.

January 21st, 2014

C1D1: Everything is okay.

So we stayed up and partied last night.

That’s a lie. But it sounded good.

We laid awake for a few hours last night, sporadically talking, but mostly snuggling. Occasionally Ginny would wake up and we could hear her groggy cries on the monitor. She is normally okay at night but this cold has us ll feel a little crummy. My sweetheart climbs out of bed to comfort her. I like hearing his voice as he calms her. “It’s still dark outside, it’s still time to sleep.” He is an expert at negotiating with our toddler. He’s very warm as he climbs back into bed and I push my face against his chest, I feel safe next to him. He reminds me when I feel weak that we are doing everything we can, that’s all we can do. It’s the best we can do, and we shouldn’t stress about what we can’t do.

Though long, that is our current family motto.

 

I lamented how weird I will look without hair. He said it didn’t matter. I lamented the weather. He reminded me that it doesn’t matter. “This feels unreal.” He calmly agrees. I quoted things I should’ve avoided reading online. He patiently tells me that none of it matters. We are doing everything we can, that’s all we can do. It’s the best we can do, and we shouldn’t stress about what we can’t do.

Eventually I waited too long to speak up and his raspy heavy breaths meant he was beyond talking to. Sure, I could keep talking, and he would respond – but he’d never remember the conversation. In disappointment I resigned myself to falling asleep. I’d taken some pain medication to try and help the process, and I expected my brain to be wired, anxious, or nervous. Focus on the lack of pain in my abdomen. That means the medicine is working. Focus on deep breaths. The humidifier spouts cool mist over my head – my favorite way to treat congestion. It’s like walking outside after a cold rain in Tennessee. I like the way it feels my lungs. It feels real. In my world where every moment of the day feels unreal, breathing wet air feels real. I’m certain it will all feel real very soon.

 

I drifted off to sleep, then awoke to Ginny’s coughing on the monitor. We don’t need that thing – she’s right across the hall – but it’s like parent kryptonite. Brandan mumbled about taking care of it and I asked if it was time to get up. I took the following grumbles to mean “yes” and headed to the bathroom. After a nice pep talk in the mirror I walked back into my room at looked at the clock.

2:34am

Well… I’d only been asleep about two and a half hours. Brandan was still laying in bed, the monitor silent. It took me a little over an hour to convince myself to sleep again, I didn’t want to take another pain pill, knowing it would mean being groggy when I needed to be awake. Not sure if that pay-off was the smartest trade. Regardless, I woke up just fine at 7:30, and got in some nice Ginny snuggles.

Because Brandan had the same head cold going on we decided it would be courteous to the other patients if he stayed home, so my Mom went with me. Her car has 4-wheel drive, so it was probably for the better. So my sister Teresa came over to babysit, Brandan and his sicky germs got to sleep in then do some work, and my Mom and I headed off to the infusion center. This is the same place my neighbor received her treatments, and came highly recommended. The run down is really pretty boring, though the nurse taking care of me did a good job and explained everything to my satisfaction.

  • (9:30 am)  Access the port. This literally takes SECONDS and is painless because I have a numbing cream to use on it. *happy-happy-joy-joy*. Oh the things I never thought I could be excited about.

    Needle in, just waiting to get hung! (I’m sure that’s a thing… right?)

  • They started a nice big ol’ bag of IV fluids, an IV steroid, and a pushed anti-nausea medicine.
  • Once the steroid was done a second anti-nausea medicine was dripped. Nurse H explained that two spots in the brain control nausea, and these drugs each cover one of them. I didn’t experience any nausea – so I’m going to go with “wam-bam-thank-ya-ma’am!”.
  • (11:25 am) We finished what I am calling the “pre-meds” and then headed for the big guns, or as Nurse H calls them, “the magic potions”. Fitting, for my Harry Potter “Mudblood” reference.
  • The first drug was Doxorubicin. It looks like cherry kool-aid, and is “pushed” (not dripped) into the IV in three intervals. It’s actually quite incredible what modern medicine is capable of. If you’re a biology nerd it’s actually interesting to read how his works. It basically is like a sleeper cell that jumps into action when a cell hits a certain point of it’s replication process. In this case, it waits until the DNA has been pulled apart, then stops transcription – you can’t make a cell with half a piece of DNA, and the cell dies. This is the drug that will make my hair fall out. Supposedly that will happen in 2-4 weeks.
  • Also, Kool-aid colored stuff in your blood will change the color of your urine. Apparently I’m impeccably hydrated, because I didn’t notice it more than once and though the nurse mentioned it might look like blood I don’t think I’d have noticed if she hadn’t mentioned it.

Behold: Nurse H (pictured with permission), and syringe 1/3 of “kool-aid”.

 

  • Cyclophosphamide was next, just one syringe, very simple. I am also in awe at how this drug works… all drugs really, but I digress. From what I understand this drugs acts by confusing the DNA building process, making the DNA connect in places it should connect, which leads to apoptosis, aka: cell death. Naturally, this one is a little scarier because the problem to begin with is malformed DNA, so the goal is to mess it up so bad it must die, but there is the slight risk based on dosage for it to just… ya know… make more cancer. The risk is incredibly low (Like 1/20000), but it definitely does a number of any cell willing to drink it up.
  • Then lastly Nurse H hung Vincristine. I’m going to make you wish you’d paid attention in high school biology. This lovely works by stopping an actively dividing cell when it reaches the metaphase of mitosis. This is where the chromosomes (or should I say “centomeres”) are all lined up pretty across the center of a cell, right before those spindly microtubulars begin the next step (daughter cells!). It stops the cell from going any further though, so no daughters for you, cancer cells!
  • Vincristine was kind of a slow process. Because of my head cold they had to do it over 90 minutes. Normally they do it slowly to avoid cranial/sinus pressure – unavoidable since I already had a head ache and sinus pressure. It was mildly uncomfortable, but no worse than my standard headache.
  • Cancer drugs are… amazing. Scary, terrifying, yet amazing. They all work by killing the cell at a different point in the reproduction process. Gotta cover those bases! My cancer cells are greedy little sucks and definitely willing to “sip the kool-aid”. Unfortunately my hair, the lining of my mouth and intestinal track, and my ovaries are going to have to take a hit. Trade-off, and calculated risk. This is a risk I’m willing to take to stop the collection of tumors inside my stomach from killing me. I don’t plan on dying.

I feel normal, but kind of funny. Part of me thinks the funny feeling is just my brain playing tricks on me – brains do funny things. My real or slightly imagined side effects and on going issues at this point are:

  • Headaches. This one hasn’t really left me since the last IV push.
  • A god-awful taste in my mouth. Some times it tasted like I imagine biting a glue stick would taste like (you’re welcome for that imagery), and sometimes it’s just a nasty almost metallic taste.
  • Calling back to my preggo days, lots of bathroom visits (only 1-2 of these were slightly technicolored though… I may be disappointed). The drugs do there job, then they (and the dead cancer) need to get out of my body (pronto please). The best way to encourage this process? Hydrate, hydrate, hydrate! So on top of the IV fluids I’ve been drinking as much water as I can stand. This is also to stave off what’s called Tumor Lysis.

—-pause—

Tumor lysis is when the tumor breaks down so fast and in such large quantities that the waste (which, thinking small, like cellular level, is mostly just a bunch of salts) can clog up the kidneys. To avoid this they have me taking a gout medicine. Though I’m not at risk of developing gout, this mediation forces those salts to stay water bound. The more water moving through my system, the more opportunity my body has to get rid of the tumor waste.

—-play—-

  • Slight numbness in one hand. Apparently this is a normal symptom, but kind of scary. Massage and movement seem to help though.
  • Exhaustion. I don’t know if this counts as a symptom any more, especially since I slept so poorly last night.
  • I’m also having to rinse my mouth with baking soda and water. It’s supposed to help prevent mouth sores – a common side effect of RCHOP.

The worst of it today was really just discomfort. Thank to all of the supportive signs and messages I was attacked with I went into my Cycle 1, Day on high note. I plan to post a bunch of them here once I get another chance to hog my husband’s computer. :)

 

I feel elated. I keep thinking about the signs. It seems silly, but knowing people care enough about me to either a) run to the store and buy a poster board or b) use a poster board they had in reserve (because who really keeps poster board in their house? I’m a craft maniac and have… one… and it’s black… so it’s useless) is oddly comforting. I love it. I love all of you. Can I say that? I mean it. I love people I’ve never even met.

I feel productive. We are doing it. We are doing what we need to do. I’m doing it, technically, but I’m not alone.

My head hurts. I should probably be sleeping… but I’m stubborn. Plus, I’m only on my first Harry Potter movie of the night.

Brandan probably needs to work. And I was too lazy to go upstairs and type this on my desktop so I comandeered his laptop while he read sweet stories to our daughter before bed time… and so I should give it back to him.

My brother and one of my sisters take the cake for making me laugh with this facebook wall addition. <3

 

 

 

 

January 17th, 2014

Chapter 4: PET scan & Bone Marrow Biopsy

“Let’s go for a walk.” I hadn’t seen my newly acquired fiancé in a couple of weeks. It had been a whirlwind summer full of cancelled plans, and exciting new adventures ahead of us.

“Okay.” The humid Tennessee air felt heavy in my lungs. We held hands and walked down the street. The last time we’d seen each other was over a month earlier, before school has started. Brandan was finishing his senior year at Virginia Tech, while I continued my education at the University of Tennessee. “Where should we go?” It was a silly question, neither of us was particularly familiar with the area. Since Brandan didn’t have a car my Dad had driven from northern Virginia to bring him down for a football game. Dad left to meet up with some old college buddies and Brandan and I walked.

This trip served a purpose. I knew what was coming. His palms were sweaty – he’d just spent 4 hours in the car with my Dad – but I pushed my fingers between his. “How about the park?” I’d never been to the World’s Fair Park, so we walked. Impatiently. I think he was biding his time, but I was antsy. As we walked I would stop along the way… waiting. The top of the sun sphere? How about in front of this fountain? The weird statue of the piano guy? No… no… no… okay… well. Fine. Sitting down on the concrete bench I patted the spot next to me, but he didn’t sit. Instead I see him wrestling a box the size of Canada out of his pocket.

“Jessica, I want to spend the rest of my life with you.”

That’s all I remember. I think I cried. I’m pretty sure I said “yes”, but I may have said nothing and just cried. Luckily Brandan is fluent in my version of crazy.

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On Tuesday I had a PET scan done. The procedure is relatively painless, but time consuming. Brandan and I arrived early, registered, then were eventually lead to a small room with a reclining chair for me and a regular chair for Brandan. They started an IV live in my hand – the easy spot – then we played the waiting game. For a PET scan the inject radioactive sugar into your veins. Prior to the test I was told to not eat any carbs for 24 hours. The waiting game involved waiting for the dose of radioactive stuff to decay to the right amount. Because of my age and the number of PET scans I’m going to need (it is the most effective way to find my kind of tumor) they waited until it was the lowest dose we could use. Then they pulled out a syringe with a 3 inch metal sleeve around it. The injection was painless, though it was emotionally challenging. Some times knowing is the hard part. Then we waited, in stillness. Brandan read to me, and I tried not to think too hard. My cancer is “aggressive”. It is growing and constantly taking sugars from my blood stream. So after an hour of waiting I was laid down and scanned. The scan was also painless, but time consuming. It was also emotionally draining. Just laying there – forced to think about the things growing inside of me. I laid there, the machine slowly inching me through the scanner, for 45 minutes.

He’s started doing “voices” when he reads to me. I love it!

Next time I’m taking my own CD to play. The song “Radioactive” by Imagine Dragons will be included.

The music playing was like some sort of dramatic background music. Depressing.

Once the scan was done I couldn’t be near children for 6-8 hours, as a precaution. Not seeing my daughter all day sucked.

We were able to bring a disc home with the scan. It was a bad idea though. I popped in the computer and to my dismay realized that… well.. realized why CT scans are not enough. The CT scan had shown the tumors in my abdomen. It had not shown the tumors in my chest.

Enter my last dramatic blog post. It was a tough night. We had felt like things were under control, just to find out it is worse than we thought.

pause.

It’s not worse, really. It doesn’t change the treatment, it doesn’t even change the prognosis. It just changes a few words on a few pieces of paper. Nothing has changed, but it was a blunt reminder that we have no control. No matter how hard I try to feel in control, I’m not.

play.

The next day we went to see the oncologist in Fairfax. She slowly helped melt my hopeless feelings again. Nothing has changed. Nothing has changed. I keep repeating that. My brain has taken a turn towards “depressed”. But I know that is something I am in control of, so I’m trying my best to manage it.

She explained the treatments to come, talked to us about the schedule, the side effects, and the prognosis. Though there are always risks, this is unlikely to leave me permanently infertile. So that’s… good… I guess. Nice to have options. As I said to my Dad this morning though, “I’m not sure if pregnancy is something I want in my future, I’ll need to get past the constant paranoia first.”.

One step at a time. One breath at a time.

So I’m now officially Stage 3.

This crop doesn’t show the tumor under my right clavicle, but you can see most of the tumors in my stomach. Terrifying – huh? That one on the bottom left is the size of a baseball.

I’m also pretty sure that I might run out of blood. Due to my slight fever they needed to test for bacterial infections. So much blood drawing. So much. And they won’t use the port for it. Wamp wamp.



Yesterday we checked in at the Radiology department at Inova Farifax. We waited a while. Waiting is the hard part of this game.

Once we were finally taken back I was a little disappointed – my other procedures at Sentera spoiled me. Sentera has all private bays, while Inova’s bays were just separated by curtains – and were much smaller… and busier. The staff was nice though, which is the important part.

We used my port for the first time. It was itchy, but I guess that is slightly better than four needle pokes to the arm. For chemo I will have a numbing cream to put on the area beforehand to make the process as painless as possible.

Lately I am impressed with how far medical procedures have come.

The had me laying on my stomach, then they put this lined sticker on my back that would show up on the CT scan. The doctor then looks at the scan to know the best place to take the sample from. I was sedated, then the area was numbed. You can’t numb bone though, and I do recall the actual biopsy portion. I may or may not have cried. For the record I didn’t curse. lol.

Then… well… I moved back to the rolly bed and they returned me to the bays. Woot. Normally I try to power through the sedation so that they’ll let me go home, but my phone was dead and offered no distraction. I need to get one of those phone back-up battery things that charges the phone battery… back up.

Just out of surgery and feeling okay.

I don’t recommend owning a Motorla Atrix HD, the thing is dismal. Pretty, but dismal. The battery lasts just a few hours even with most features turned off. But I digress.

So I slept for an hour, woke up, ate a very bland chicken salad sandwich and some very delicious apple juice, then tried to play games on the iPad my Mom gave our family for Christmas. But woe-is-me the wi-fi did not reach my cushy end bay and the most interesting game on the iPad was a Mickey Mouse doodle pad.

I may or may not have spent some time honing my drawing skills.

After about 2 hours of “recovery” time we were going to be allowed to go home. I had been lead to believe that while uncomfortable this would not be particularly painful. This was a lie. I hadn’t experienced any pain while laying down, despite the pain during the procedure I some how thought it would be all good. Lies. Lots of lies.

When they stick a needle into your bone and steal some it… that hurts.

It was sore for most of the evening. I slept through Harry Potter #2, then we went to pick up my baby love from her Aunt’s house.

_____
_____

“Jexica!!!!” She runs into the hallway as I start down the stairs. “It’s Jexica!”.

All of the new adults with real names has left her confused. She addresses us as Mommy and Daddy, but has started talking about us by name.

“Yes, that’s my name, what’s your name?” I am constantly brushing her blondish-brown tendrils away from her face.

“Ginny-baby.”

“Oh? I thought your name was Ginny!”

“No! I’m your Ginny-baby.”

I snuggle her up in my arms. Her perfect little body, strong and determined, nestled in my arms. “I love you Ginny-baby.” I’m brushing her hair again with my fingers, holding her like I did before she had even considered walking or talking, tracing her cheek, then resting my hand on her tummy. My precious little one. As I rub her little tummy she reaches over and rubs mine too.

“I’ll kiss it better mommy, that’ll make it much better. You tummy will be much better.”

 

She’s a goober.

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_______________________

I’m nervous. There is a lot to be nervous about. So much I can’t control. So much I need to let go of.

I’m thankful. Several people have reached out to me. I don’t have the mental fortitude to list every one, and I cannot explain my gratitude well enough. From the meals to donating and sharing the fundraiser my friends has organized, to the people who have reached out to offer solidarity, despite their own suffering. It gives me perspective, and helps me stay focused on my priorities.

I’m tired. Stress will do that to you.

I still love my life. Everything that was perfect before this is still perfect. I will not let this mar my appreciation for the good in my life. My sweet husband still adores me, my sweet daughter is still healthy and thriving.

I’m not alone. I am reminded constantly. Between blog comments, the donations and sweet messages I’ve received, and the meals people have brought over – I’m thankful for the constant reminders that I’m not fighting this alone.

January 15th, 2014

Chapter 3: I’m not that strong.

When I was first pregnant with Ginny… maybe 3 months in… I was so excited to set up her crib. My parents had brought it over when they helped us move into our apartment, and it had sat in pieces. One day while Brandan was at work I decided I would put it together. And I did. I made lots of mistakes too. I used the wrong screws in the wrong holes, I put a side on backwards and had to take the whole thing apart again before I could put it together again. The crib belongs to my parents. They used it with their youngest two children, and it has traveled the world. The instructions are long gone, but I updated the latch protectors that my parents got, but never put on. By the end of that 4 hour adventure I had constructed a very stable crib, killed the battery in my electric drill, and accomplished something on my list. It felt great. I felt strong. It doesn’t matter that Ginny slept less than 12 hours of her entire life in that crib. I did that. I did that on purpose, with purpose. I worked hard and I accomplished my goal.

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But right now I am not strong. It seems to be an adjective people like to use. It’s a compliment – a way of describing how they see me. But it is not how I feel. I’ve found that shoe metaphors seem to work really well with cancer. So I’ll go that route again.

 

If the person you love more than anything is on the other end of the field, will you walk to them? What if the field is full of spiders? Jumping spiders. Yeah… that sounds awful. Let’s make them big too. So a football field of jumping spiders. And you need to get across it. The people who matter to you are on the other end. Or maybe cake. Whatever suits you. I don’t think cake is strong enough to pull people across a field of giant jumping spiders… but okay.

 

Crossing this field would be easy. It’s still easy. Literally all you have to do is walk. It would be much easier to walk if you’re covered in some sort of anti-giant-jumping-spider suit, but unfortunately you’ve arrived in a t-shirt and some yoga pants. But you still have to go. You have to go, and you don’t get to wear shoes. So how do you get there? I believe the answer is obvious: run. Run like the wind, and hope those damn spiders keep to themselves.

 

I feel like I’m in the middle of that field. A few spiders caught in my hair already, and Brandan and Ginny are waiting at the other end. And I just have to keep running. I don’t get to stop. I don’t get to say “Oh, I’m tired, let’s just rest a while”, because there are giant spiders everywhere. I’m not running because I am strong. And running does not make me strong. It makes me human. It means I want to live, and that I won’t let these spiders control my life. I’d like to get past them as soon as possible, with as much grace as I can muster, but at the end of the day I’m doing what I have to do, no different from what I was doing two months ago. Except for I’m now surrounded by giant jumping spiders.

 

I consider myself a realist. With people congratulating me on being so strong I find it difficult to reconcile my actual emotions. If you were in my shoes… or rather… in my field of giant jumping spiders without shoes… you would do the same thing. But I appreciate the sentiment. It is not lost on me, and I treasure the support I have received over the last few days.

 

I’m tired. It’s after 4am and I can’t sleep. I took a percocet and I still can’t sleep. The stress is starting to get to me.

 

I’m scared. And I’m allowed to be. I’m not a betting kind of person. I’m a play-it-safe-at-all-times kind of person. With my specific diagnosis my “prognosis” is actually 60% likely to be cured, and 40% likely that it will not be cured. If it is not cured the first time around, it is more likely that it is “incurable”. I have an aggressive form of cancer. It’s growing every day. I can’t let my mind wander in these places.

 

I’m worried about my daughter. This isn’t fair to her, and it’s going to suck more than it already does and I hate that I can’t give her what I want to give her.

 

I’m surrounded by wonderful people who have reached out to help me. I would be a lot more depressed if it weren’t for the messages I’ve been getting. My brain is a bit foggy lately, but know that I’ve read and appreciate each instance of caring sent my way.

 

I’m anxious. We have an appointment with the new doctor tomorrow. I’m ready to start treating this and to just get it out of me. I feel like my body has betrayed me, and there is nothing I can do on my own. My only option is to literally wage way on my entire body, in hopes of killing off the rogue cells.

 

I can’t be alone with my thoughts. The brain is really an incredible thing. Depression, infatuation, forgetting most of childbirth… my brain has been all over the map in the last 6 years. But I had gotten to a really good mental place. I’m determined to stay there. Some times my mind wanders down a road and at the end I die, 26 (I assume I’ll make it to March) with a daughter and husband left behind. I hate these roads. But when it gets too quiet, or by some accidental slip I end up meandering into these thoughts I can almost feel my brain reeling in disgust. Like I’m betraying myself. Like most of my brain is determined to get through the spiders, and there is a small tiny part that would rather just give up. It’s a terrifying feeling when you can’t trust yourself. My body has betrayed me, and my mind is all I control now.

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It’s that melting feeling. Like when you worked all night on that essay, then arrived to class and realized you were empty handed. Like when your Mom called and said Grandpa had a heart attack. Like those ten minutes when the new nurse couldn’t find Ginny’s heartbeat. Like heat washing over your chest, melting into your spine. I feel that every time I think. I’m not as strong as I appear. But I don’t have to be. I have cancer.

 

January 10th, 2014

Chapter 2: finding the right place

I didn’t know how to love myself, until my husband taught me how. When we were first married I would quiz him on the conditions of his love for me.

“Would you still like me if I were thinner?” 

“Of course.” He says, his tone always even.

“As thin as Kelly?”

“If that makes you happy, then yes.”

“As thin as Sarah?”

He considers it. Sarah is quite thinner than I am. “If that makes you happy. I love you – it doesn’t matter.”

“What if I dyed my hair blond?”

A non-commital shrug.

“Blue?”

“That might be cute.” He laughs at my nonsensical questions. The smile that shows his teeth. It only happens when he’s actually comfortable. I love it.

“What if I go bald?”

“That won’t happen, but I would love you any way.”

When I told him I had cancer I broached the subject again.

“I’m probably going to lose my hair.” Pursing my lips and scrunching my nose a little to stave off my tear ducts.

“I don’t care about that.”

“I do.”

“Well, if you lose your hair it will just make it easier for me to kiss your entire head.” He then demonstrated how difficult it is to kiss a head covered is long brown hair without getting some in your mouth. He’s good at making me laugh. I couldn’t ask for more.

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I’ve been trying to write this post for hours. It’s a tie between information overload, and not enough overload. Is that possible? It feels like when you walk up to your dresser, pull out every pair of pants you own, and still feel like you have nothing to wear. I have a lot of information, but I’m not sure how I feel about all of it. So I’ll touch on three things.

1. The Port

2. The Bone Marrow Biopsy

3. The New Doctor

 

1. The port was put in on Wednesday. I had the procedure done at the Heart & Vascular center at Sentera Potomac Hospital. This is the same place my CT guided biopsy was done. With the biopsy under their belt that had me come in 30 minutes earlier than the normal “early” time. Why?! For the same reason I need the port – my veins suck.

Even with my efforts to over-hydrate and the xanax to calm my nerves it still took a couple tries to get the IV started. Prior to starting the needle party I informed the nurses that for every needle after the first one they would owe me a coke.

When I came out of surgery I had one bottle and two small cans of Coke-cola sitting on the table. One was already poured over ice with a bendy straw.

So it sucks to be in the hospital, but the staff was great and very accommodating.

 

Just resting his eyes. We’re both sleep deprived!

 

Once the IV the placement surgery took 1.5 hours, and they released me 30 minutes later. It was nice to just go home to recuperate. The port will be used for administering any treatments, but can also be used for CT scans and taking blood samples.

 

Mine is on the right side of my chest and involved a small incision near my collar bone, then a larger incision three inches below that. The port is about as wide as a quarter, and half an inch “tall”. Recovery has been… okay. My neck has been aching from the position, the incisions are healing up nicely though. They didn’t do any stitches, just a glue-like substance called “Derm-bond”. This will leave a “cleaner” looking scare that should disappear easily. Besides the neck ache and an ocasional itchy feeling It’s healing nicely.

It doesn’t look near as angry as it did a few days ago! Plus I’m getting used to the feeling of it being in there.

 

Ginny had spent the night at Auntie T’s house, and she hung out there all day. My sweet sweet neighbor brought over dinner – delicious home made Chili and corn bread, which Ginny and I enjoyed the next day for breakfast!

warm and buttery – just the way she likes it.

Just another one of the “first steps” along this path towards curing my cancer.

2. While at the hospital for the port implantation I asked the surgeon if they could do the bone marrow biopsy while I was sedated. She was more than willing and the called the oncologist for an order. The oncologist said that he understood my anxiety, but would prefer to do the biopsy himself – because he wanted to use his own lab. I didn’t like that idea, but I assumed the doctors knew what they were talking about and we went about our merry way with the port.

The next day I arrived at the oncologist’s office. The bone marrow procedure was explained, I laid down, and they started numbing my hip. The oncologist felt the bone and after five minutes of my building anxiety he said he would not perform the procedure because I was “too jumpy” and he didn’t feel comfortable doing the procedure. He hadn’t even numbed the area completely and was pinching me… my bad.

So… now he wanted me to schedule another appointment at the hospital to be sedated for the biopsy. Because I’m made of money.

I politely requested copies of every paper in my file, and then left. I don’t have time to deal with that kind of behavior.

3. Before any of that crazy went down the same sweet neighbors who has been feeding me had been researching other doctors. Ms. A had cancer last year, and has been an incredible support person for me.  They encouraged me to seek out a second opinion, and have helped me come to grips with what this process could possibly be, and have done a lot of the leg work in finding me a specialist. My first oncologist, Dr. “Jumpy”, was a referral from my internist. A first step.

While I was walking around Wegman’s eating a cookie trying to not flip my lid over this whole bone marrow thing Ms. A was calling in favors and getting my an appointment with a lymphoma specialist. This morning we drove out to Farifax for an appointment with a new oncologist before their office was technically open. We got lost, arrived late and flustered, and she was still gracious. We waited in her office surrounded by pictures of her cute kids, and framed papers singing her lauds. She sat down with us and in 30 minutes told me more than I’d learned from the first oncologist in 3 appointments. She had to go take care of another appointment where the patient had kindly arrived on time, but asked us to wait and she would be right back.

Understandable.

She then examined me, and actually touched the largest tumor in my stomach, jiggling it around and allowing me to feel it. My other doctor said he couldn’t feel it, but had seen it on the path reports. She explained where we are in the diagnostic process, let us know she’d ordered more tests that were necesary for the diagnosis (that Dr. “Jumpy” hadn’t ordered.), and answered our questions very thoroughly.

 

We learned a lot at the appointment today. Some of it repeats of what I’ve read online, some of it new and insightful information. It sucks to have cancer – but I’m looking forward to working with this doctor. Not something I would’ve ever thought could happen.

 

Ms. A brought us dinner again tonight, and my sister Becca spent the night last night, and is doing so again so Brandan and I can sleep in tomorrow. Ladies in my neighborhood are busy organizing support systems for me while I go through treatment, and I can feel my stress melting away.

 

I am loved. I am well cared for. I am the luckiest unlucky person out there.

My toddler loves a good selfie!

 

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January 8th, 2014

Chapter 1: I don’t plan on dying.

We’ll lay on our bed and I’ll run my fingers over his prickly beard and explain that I need him to live at least one day longer than I do. You see, I can’t imagine wanting to be alive with out this sweet man. He nods and points out that women typically live longer than men, but he promises to do his best. In our hypothetical world where we choose our deaths he’s willing to live a little without me to make me happy – though he points out that he would be rather unhappy with out me. I’m mad about this man. I want to spend the rest of my life with him. He gives me reason to live, he gives me reason to fight.

 

The day after Christmas, 12/26/2013, I set my phone down in the kitchen. My cheeks felt pallid, I could feel my heart… faster… or maybe slower… I don’t know… I shouldn’t feel like this. Ginny sat in her green chair with an episode of Micky Mouse playing in the background as Brandan sat at his desk. I laid down on the bed and asked him to come snuggle. My fingers on his scratchy beard, I repeated what the doctor had just told me: “I don’t have kidney stones. I have several masses in my lymph nodes. The largest is the size of a tangerine. 7 cm.” I held up my fingers to help my metrically challenged husband. “It’s called lymphoma.”. 

Technical stuff:

Lymphoma is a type of blood cancer. I think people assume blood cancer = leukemia, I may have been guilty of that, but thanks to hours upon hours of Googling I’ve learned a lot more about blood cancers than I feel any person should ever have to learn. The lymph nodes are kind of like the car-wash of the blood system. At every second of the day 80% of your blood is in your cardiovascular system (veins, arteries, etc.), while the other 20% is working it’s way through the car wash (your lymphatic system). It’s slightly more complicated than that – in that the lymphatic system is a filter and so only plasma is actually circulating through your lymph nodes, but the gist of it is: my body is confused.

Lymphoma is a cancer of the white blood cells.

We are still waiting on results. In the last week I’ve had 4 blood draws, 2 CT scans, and a tumor biopsy. Now I have a PET scan and bone marrow biopsy scheduled, and I am having  port “installed” because my veins suck and every time I have something that requires a needle it takes four needles, lots of pain, and 30 more minutes than it SHOULD take. So… there’s that.

Other technical stuff:

My cancer is currently “Stage 2″. You can read more about Lymphoma staging here. But basically, Stage 2 means that more than one set of my lymph nodes in infected, but because both of the infected sets are on the same side of the diaphragm it is still “okay”. I have a bone marrow biopsy scheduled for this week. If the results show cancer cells in my bone marrow then it will jump to Stage 4. If you rest your hands just below your rib cage on your tummy you will feel exactly where my tumors are. Under the palm of your left hand I have a 7 cm tumor, and then several smaller ones scattered across that area.

Understanding the “prognosis” can be confusing. It’s very subjective, but the general statement from my doctor was that people my age, in my health, with my blood results, with my type of cancer have a 70% survival rate of 5 years. This is supposedly good. It pisses me off because I shouldn’t have to think about this. But 70% is a lot better than say… 40%. So I’m trying to stay positive. I have zero of the “risk” factors that indicate poor prognosis, and unless my tumors reject the treatment it should be… relatively… smooth sailing.

 

My symptoms were exhaustion and back pain. Let me rephrase that. My symptoms were the symptoms of being the mom of a two year old.

 

 

Personal stuff:

I’m scared. The last few weeks have been full of shitty experiences. I’ve had three CT scans, a biopsy of one of the tumors, and thanks to my uncooperative veins each IV and blood draw has taken at least 3 needles in less than optimal locations (for some reason my inner elbow thinks it’s too good to be poked with a needle. Go figure.). I’ve been forced to think about things like how is Brandan going to handle this? How am I going to take care of my daughter and myself? If I don’t die will I ever have more children? Will I die?

I’m bitter. I’m 25. I have an awesome life and I hate that I’m dealing with this. Not that I think any one every “deserves” cancer, but I feel like… well… I really don’t! lol. This feeling comes and goes, but when it comes it’s difficult to shake.

I’m hopeful. We immediately reached out to our friends and family. We are incredibly blessed to have people who love us so much. Preliminary results showed that the cancer seemed to be well contained in my abdomen, my other organs look healthy.  

I’m tired. Because let’s be honest – I’m the mother of a two year old who doesn’t nap, and being exhausted is not a new feeling. Unfortunately this disease has left me even more tired than usual, and the medicine to take care of the pain also makes me tired…. so I’m just tired.

I’m thankful. Before this point I’ve told just family and a few friends that I needed to lean on. Already I’ve felt the out pouring of love and support. It gets me through those bitter moments.

I feel like the luckiest unlucky person in the world.

 

So that’s my life right now. Emotional, over whelming, busy, crazy, exhausting, slightly painful, generally uncomfortable, and tired. Yes… my exhaustion deserves to be mentioned twice. lol.

 

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