the chemo brain is strong

I rolled my eyes when I read about chemo-brain. I couldn’t begin to fathom what it could possibly mean. “Impaired memory.” I’d experienced my fair share of mommy-brain moments, but nothing could prepare me for forgetting some one’s name the instant they introduced themselves. So, for your reading pleasure: a list of things I – a 27 year old woman – struggle with after chemo.

1. Recipes. There is a certain finesse to following a recipe. A quick read through should give you the gist, so that you can then start at the beginning and have a good idea of what’s going to happen. Not me. Not any more, at least. Long gone are the days that I can read a recipe online and recreate it in my kitchen at a later date. In fact, the only way to make sure I’m going to not screw up a recipe is to re-write it, by hand. I guess it saves on printer ink.

2. I was never fantastic with names, but pretty good. I could remember the names of people I’d met, or characters from a show I enjoyed. Now? Forget it. If I don’t write that person’s name down it’s going to be gone in about five seconds. I usually abate this problem by asking them to add me on face book, but it has lead to some fairly embarrassing face-to-face challenges. There’s nothing more frustrating than knowing some one, and not being able to remember their name.

3. Productivity. I’ll be honest. I wasn’t incredibly productive before my cancer diagnosis. Mostly because I was tired all the time. So I guess there has been some overall improvement in this department, but I am so easily side tracked. I lose half of my day when I start doing the dishes and realize I can’t find the sixth part of the damn onion chopper so I decide to organize a draw which leads to emptying the entire pantry onto the kitchen table which leads to ordering pizza for dinner. #doesntmattergotpizza

4. Time. I find it difficult to measure the passing of time. Never mind that I am still almost constantly tired (especially if I stay up late… like I’m doing now…), but my day just disappears. Most of my friends know that I keep a timer on my phone. It goes off every day at two o’clock. Mostly so that I know that it’s two o’clock. That means I should eat now if I haven’t eaten yet. That means B-man will be home from work in a few hours. It means I should take my medicines if I haven’t. It means my day is slipping away. It means my daughter is running around singing a song about two o’clock because my husband did it once.

5. I’m a rude friend, or a lousy acquaintance. Picture this: the magazine photo of a fun motherhood. Coffee with a friend across the kitchen table while the kiddlets play in another room. And yet, I can’t enjoy it as much as I would like to because the second I want to respond I have three choices. First, the rudest option, interrupt and say what’s on my mind. Second, stop paying attention to what my friend is saying and repeat my thought to myself over and over again and hope that it stays relevant to when I get a chance to say it. Or third, forget my thought and come across as uninterested. With close friends they have been fairly patient on my toddler-level conversation skills. With every one else I just nod and smile.

6. I have to write everything down. And by “write down” I mean literally, with a pen, on paper. This is actually my cure-all. From grocery lists to daily tasks: if it’s written down, there is an incredibly improved chance that I will remember it. Thank goodness. The hard part here is that I then end up keeping a ton of lists, and an actual paper planner (I’ve actually had people ask me “what’s that” in regards to my planner. Bite me people. It’s not THAT crazy!).

7. There’s probably a million other things, but that’s the joy of chemo brain. Ignorance is bliss and I’ve completely forgotten. And that’s okay. This is where I am, and nothing changes over night.

 

It’s not glamorous, most people don’t understand that some one my age could actually struggle with most of this, and people always say “but it’ll get better, right?” The answer? Supposedly. It can take 4-5 years, and not every one regains complete function. Until that point I will be forcing myself to do things I don’t feel confident in doing (like writing!), and keeping a mountain-sized-pile of lists.

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Touchdown

If words could describe my heartbreak right now this post would write itself. It’s easy to define black or white, but grey is a complicated thing. While my own words are faltering I’ll hind behind ambiguous phrases and meaningful quotes.

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Better news.

I’ve finished running across the field of spiders, and have scored.

I finished chemo on May 7.

I had my final scan which came back clean.

I’ve had my port removed.

 

 

I’m still exhausted, though the stress, tension, and fear seem to have subsided. I’m trying to focus on the exciting things going on this summer.

 

B-man and I helped in planning a big surprise party for my neighbor last weekend, which was a blast. I felt sore for two days afterwards. I’ve been anxious about doing too much, worried about over-exhausting myself. But the soreness of over worked muscles is oddly gratifying.

 

We will be attending a wedding on Brandan’s side of the family, then vacationing in Maine for a week. Traveling will be nice. I love driving. I love listening to Brandan read to me, and Ginny pointing out the things she finds interesting along the way.

 

We’ll also be attending a wedding on my side of the family. They pull us back to Tennessee, and it’s a nice feeling. Some times I’ll drive down route 17, or all the way out to 29 and I can feel the tug. Just keep driving. My soul yearns, how silly of it to forget that my heart belongs in Virginia now.

 

My hair is growing back. It’s about half an inch long, and has been noticeably growing for about 2-3 weeks now. I’m curious as to when I’ll feel comfortable going out in public without a hat on. When I look in the mirror I just see a sickly version of myself. Not that a hat makes that much of a difference. Self-esteem is a mercurial emotion. Perfectly fine until a sideways glance at a window force an unwanted reflection on me. The circles under my eyes more pronounced, despite copious amounts of sleep. My eyebrows have thinned, and the expressions I see aren’t mine any more. It’s weird and hard and annoying. But I guess if the most I have to complain about is how uncomfortable I am with my body, I’ll see that as a win. I’m not dying. So I’ve got that going for me.

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It only took one needle, and the IV for my surgery was in. That’s a first. It’s because they were able to use a smaller needle, since they didn’t need to use any contrast for the port removal. The nurses all remembered me, all asked about Ginny. I’d forgotten that I had been there twice before. Those early months of doctor visits and procedures have all run together into one nightmare of a memory. This time I remember the tent they put over my head to keep me from breathing on the surgical site. I remember the almost painful pressure on my collarbone as they removed the catheter. I moaned a lot but didn’t ask questions this time. Conscious sedation. I guess it’s less dangerous (because you keep breathing for yourself)… but a strange thing to experience. The port is gone. I now have two lines, like an equal sign, on my chest. One line to put it in, a second to take it out. It is sore and itchy, but I know it will be better in a few months.

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Moving forward I will have one scan every 3 months for the first year. Then one scan every 6 months for the second year. Then I will have one scan a year for three years. If I make it that far without a relapse I’ll be labelled “cured” and sent on my merry way. It’s just a label though. I feel good now. My confidence is growing every day. Confidence that my body with strong, that the medicine worked, and that the biggest of my worries is my hair. Perhaps it is a false confidence, but it helps me sleep at night, and when morning comes that’s all that really matters.

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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.

 

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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?

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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.

 

 

 

 

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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.

 

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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.

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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.

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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.

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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

 

 

 

 

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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.

 

//I’m trying to set up a way for people to subscribe by email. That should be available soon.

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