July 31st, 2014

zeroing in

Respond “unsubscribe” to the e-mail in your inbox if you would like to stop receiving my blog updates. Though there will be new cancer related updates for the next few years, that information will be available on my facebook page. My blog is going back to being my blog now. A place for me to decipher my thoughts, record my intentions, and a reminder of how far I’ve come. I’m so appreciative to all of the support I’ve received over the last 7 months, and cannot say “thank you” enough times.  <3

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Life moves on in a fluid, strange, crazy way. As my life’s visible perils pass and fade, those around me seem almost obtuse to my new reality. It’s difficult to know people think you’re lazy or selfish, when in fact you’re just bone tired, having spent your day’s energy in the first four hours of the day. I guess it’s difficult for people to see, as my hair grows back and I do my best to move on. A smile on the outside doesn’t mean there is a smile on the inside.

 

When people ask you how you’re doing, there are people who just want to hear that you’re doing fine, so you can move on and talk about something else. Then there are people who actually want to know. Then there is that weird group that should be the latter but have morphed into the former. I don’t know what to say to people any more, do people get bored with my responses? Shouldn’t I just magically be better now that I’m done with the drugs that… killed off my entire immune system and messed with every system in my body? I find myself sympathetically shrugging as I try to pass off my struggles as “nothing”. Wouldn’t want to burden any one with my problems.

 

I am guilty of apologizing when I’ve done nothing wrong.

 

It’s already the end of July. The trips I’d idealized in my head while I struggled through the last seven months didn’t go as well as planned. It shouldn’t be a surprise, nothing is ever as perfect as you imagine it. For a realist, letting my expectations get out of control was nothing short of irresponsible - but the alternative was having nothing to look forward to. If nothing else, I made it through my trips, and was able to spend some much needed time with Brandan and Ginny. A mental reset, time on the open road, and a week without mountains dishes and laundry has left me feeling better. Our summer travels ended on a high note – so I’ve decided that is what matters.

 

Now that my first “something to look forward to” has passed, it’s time to create a new one. It’s a little bit more abstract, but a lot more “my style”.

 

My goal is to be happy with myself. I’d be interested to know what first comes to mind for other people, when you think about transitioning into a state of personal peace. For me it involves de-cluttering my house, establishing a new schedule that works with my new (although forced and hopefully changing) pace of life, and always improving my well-being. I won’t say “lose weight” or even “get healthy”, because I don’t think that goal has an end point. Just a constant journey of re-evaluating myself periodically and making sure I’m doing good things.

 

In with the good, out with everything else.

 

You would be surprised how much energy it takes to just stand. I spent a good portion of my day re-organizing my pantry, cupboards, and drawers. Walking five feet in one direction, then five feet back, then three feet to the left, then three feet back, wash, rinse, repeat. It’s not done though. My pantry looks great, my counters… not so much.

 

Why is minimizing so difficult?

 

Establishing a new schedule is almost a joke of a goal. What I really want is to have my house on a schedule, so that all of the monotonous things are done and I have time to do the fun things. In the near future there will be potty training. I want to spend my weekends out in the fresh air. There is something so renewing in a gentle breeze.

 

will spend more time doing things I enjoy.

 

Lastly, being well. I know I need to lose weight. The drugs I used for the better part of this year added an unwanted 40 pounds to my body. It is completely demoralizing to look in the mirror at this point. I have never hated my body more. It’s actually a very unhealthy mental state to be in, and it is difficult to fix the physical problems when your brain isn’t in the right place. I’m working on it. It goes back to establishing that schedule, making time to get out and move. Making time to menu plan, grocery shop, and cook healthy meals. To be honest though, and this shouldn’t come as a surprise, it is not the lack of time but the lack of energy that is the worst.

 

My doctor said I should expect my energy to take at least 6 months to bounce back.

 

It’s only been 2 months, and everyday, normal things still drag me down. I know that if I’m going to make it through the grocery store I can’t go up and down the stairs before I leave. I know that if I’m going to stand and make dinner at five I need to be sitting and resting at 4. It’s not my ideal schedule, but it is constantly evolving. As my energy increases, my schedule will evolve to allow for more of the healthful things I want to incorporate into my life. It’s a slow, arduous process.

 

 

I am happy with my life.

 

It seems counter-intuitive, considering everything I’ve been through this year, but I love my life. I trust that the decisions I’ve made for myself and my family are the best decisions I can make. I am constantly fact-checking myself. Thought I realize my decisions affect other people, I cannot live my life for the masses. I have realized that it doesn’t matter how many people around me are happy, if I’m making myself miserable. I realize that sometimes my decisions might not sit well with people who have my best interest at heart. It’s a hard place to be – knowing that people worry and fret over me, and I am notoriously bad at standing up for myself. But I have come to realize that as much as I cannot control the lives of others, I must take responsibility for myself, and for my happiness.

 

When all is said and done I snuggle into bed with my sweet husband, the whirring of the overhead fan slowly fades behind the steady rise and fall of his chest against my back, and I know that everything that happened today was the best it could be. Sometimes the best isn’t that great, but I can’t lament the past. I can only plan for the future.

 

Course corrections beats perfection.

 

 

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June 13th, 2014

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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May 15th, 2014

Chapter 13: last one done

I relished in all of the compliments I received for my early posts about dealing with cancer and the stories I shared. Unfortunately my drive for creative writing has gone the way of my energy: absent, but certain to return.

 

As distractions from my myriad of symptoms I spent those first months laying in bed replaying childhood memories, focusing on the little details to include that would make it more real, more appealing. But now I don’t lay in bed and ponder. My brain is too stressed out for idol thought so I lay in bed and wait for my medicine to start working. It carries me off into a dreamless sleep where my legs feel heavy but my anxiety disappears. I hate it, but relish in it at the same time. Brains are incredible things… and mine is struggling to keep it together lately. Facing mortality does funny things to one’s brain. But I digress.

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I had my last chemo 7 days ago.

The first three days afterwards were spent sleeping. I honestly don’t remember them, family, friends and my sweet husband took over playing mom while I drifted in and out of wakefulness.

The next two days still involved heavy napping, with the added misery of nausea, leg cramps, and intense intestinal pain.

My finger tips are numb and will likely take a year to repair the nerve damage.

My hair is growing in… and still falling out. I’d guess that in about four weeks it will stop falling out. So that’s nice.

My blood levels are all messed up, and my pulse has been between 120-140 for the last few weeks. Normal is between 60-100 beats/minute. It makes me feel like I’ve run a marathon after just walking around the kitchen.

I’m anemic. It’s exhausting.

The bone pain has returned, but some how knowing that when it leaves it will be gone forever makes it easier to handle.

Some foods taste funny to me now. I thought that since I didn’t have this in the beginning it just wouldn’t be one of my issues. Wrong… it just waited until the last cycle.

Steroids makes me hungry. Eating hurts. It’s a vicious cycle. Thankfully, after a week, the pain upon food consumption has subsided.

My electrolytes are off, which has resulted in very painful, intense cramps in my legs – particularly at night. I’m using a supplement to help with the off-balance, but to be honest this was the last straw that made me realize drug-induced relaxation  was for me.  After weeks of waking up every few hours with a charlie horse it was time, and it helps with the anxiety, the cramps, the nausea and the stomach pain…. and the not sleeping. That’s five birds with one tiiiiiny little stone.

 

I’m feeling hopeless. It’s weird, as every one gets really excited and humans have this universal “happy dance” that seems to happen every time I see some one now. “Last chemo! All done! Yay!!!”. And I hate to be a downer, but honestly… I’m not done. I’m done taking the medicine. Now I have to recover from the disease, and from the medicine, and from 5 months of not doing anything.

 

I can’t open tough jars any more, I wager with my bladder to hold on just a bit so I don’t have to walk up the stairs again. I can’t pick up my daughter. I’ve got a bunch of mental conditioning to do to get over my new and intense visceral reaction to the idea of going to the doctor, having blood drawn, or the sweet nurses who helped me through this. Just the thought of a needle makes me want to hurl. Weird… because I’m not afraid of needles. Just sick of them.

 

I also know this isn’t over. I still have to face it for the rest of my life, in particular the next two years when I get scans to check and see if it’s come back. And when it hasn’t come back I have to worry that every little ache or pain is cancer.

It’s terrifying. I can’t think too far out or the “ifs” become overwhelming.

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So… I know I’m just a bucket of joy. lol.

 

Today was the first day that the relief of being down with chemo hit me. I stood on the landing and the relief washed over me. Each step and each second is a little bit closer to finding normal.

 

I’m trying to be happy. I’m trying to move on. It’s just a lot harder than people seem to realize, and I feel like a whiner for not being oh-so-super-excited like every one else is for me.

 

April 28th, 2014

Chapter 12: almost done.

My last chemo is next week.

 

This thought struck me as I was trying to fall asleep last night. Brandan was already snoring and it felt almost normal.

 

Almost.

 

I long for those plain moments where I lay in bed and fret about silly things like folding laundry and getting rid of my TV. I’m turning into my mother, and I like it. I imagine one day I will wake up, write my weekly menu plan and grocery list, get Ginny in the car by myself because picking up 30 pounds won’t phase me. Then we’ll walk around the grocery store and I won’t bemoan my elbows for aching under the weight of the cart. I won’t have to beg my knees to bend one more time. Legs… please just take one more step. Then once I’ve gotten home I won’t call Brandan to come help with the groceries and I strong-arm all 12 bags on my own. Two trips are for noobs. Then I’ll put my groceries away and do the dishes while Ginny feeds her pretend cows in the backyard. Maybe while she’s outside I’ll work on one of my many craft projects, vacuum the living room. In the afternoon before dinner Ginny and I will take my bike out for a spin, then some how, though my brain isn’t convinced this much energy is possible, some how I’ll make dinner.

 

I know. I have pretty lofty goals. It’s like a faint memory.

 

My current method is to pretend like I’m not sick and just keep going. My elbows ache almost constantly, my knees as well, but I ignore them. “No,” I tell them “I will not sit down.”

 

Don’t judge me for talking to my joints. Some times a stern talking to is all they need.

 

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On Wednesday, May 7th, 2014 I will be sitting at the infusion center, poison rushing through my veins for the last time. Thinking about sitting there makes me literally sick to my stomach. Thinking about cancer induces nausea. But I’m almost done.

 

I’m almost done.

 

Just this week, almost 6 weeks after I found out there is no evidence of disease, I’ve allowed myself to believe it.

 

Cancer is a weird thing. For me it was a big head game. I just had to get my brain through the last four months. I am a little worse for the wear, and I think Brandan and Ginny are too. Patience is not the first emotion to cross my mind when I need it, I’m quick to assume the worst of my sweet husband’s intentions and have inadvertently lead Ginny to think she needs to hug me at every opportunity… because something is unstable and she doesn’t know it is me. It’s going to take months of reconditioning my responses to get back to normal. I’m fighting the chemo brain. I’m fighting the self-protecting nature of the human brain. I’m trying my hardest to just be normal. 

 

My blood work came back fine, still slightly anemic, but otherwise fine. The blessings of having cancer in your 20′s?

 

I’ve allowed myself to think that maybe this will be it. Maybe I will never have cancer again. Hope is a funny thing. It is incredibly helpful in the short run but letting your defenses down makes hope potentially dangerous in the long run.

 

Currently my symptoms are joint pain/stiffness, seasonal allergies (so… that’s not cancer related), tired during the day, difficulty sleeping at night, all of my finger tips are numb, and a handful of other random things that I only remember when they’re bothering me.

So… this was just a short update to say we are anxiously awaiting the day when we can put all of this behind us!

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In the mean time, I’ve been doing some back-blogging:

a hand made christmas :: the laundry closet makeover :: the kitchen make over :: a poem about Chernobyl

Sorry about sending out that post about the casserole dish carriers… I forgot to uncheck the check box because my brain is a bit spacey and I got all excited about my sewing accomplishments.

 

 

 

 

 

April 28th, 2014

hand made christmas

Sending this out to every one’s e-mail was an accident. I apologize! I forgot to check the appropriate box.

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I’ve always loved making things by hand. I love the satisfaction that comes from making something good enough to buy. Sure – some people do it to save money, and that’s nice when it happens, but to me the real pleasure comes from creating something that didn’t exist before.

 

When I started working on Christmas presents for last year I did get held up by the pain my tumors were causing – but I thought it was kidney stones and I just did a lot of pushing on my body that I probably shouldn’t have. Regardless, I did it and I was very happy with the results.

 

For each of my female in-laws and my maternal grandmother I made a casserole dish carrier, a glass etched casserole dish, matching pot-holders and a wooden spoon with their name burned in to it.

And no the barrage of pictures!

My mom helped me embroider names on the fabric, then I sewed the carrier shells. After this I had to order the cotton belting, and I wanted to make some sort of “tag”.

A quick polling of friends on facebook said I should use the colored version. I used Avery Transfer for Inkjet printers and then ironed it on to a heavy satin fabric.

 

I sewed them in under the straps on the side of each of the carriers.

Finishing these was actually really hard since the pain was making it hard for me to sick down. How did I manage? Pillows, my trusty heating pad, and a Twilight marathon. Naturally.

And chocolate.

So each carrier had nice, sturdy straps to handle even the heaviest of casseroles.

The carrier consisted of two sets of flaps, each closed with heavy duty velcro. The longer flaps close first to keep the dish from sliding side to side once the top flaps are closed.

Inside each carrier I had matching pot holders to take with the dish, so you can lift the hot dish out, or use them as trivets. I also bought a wooden serving spoon and used my wood burning tool to put the owner’s name on it.

Then I used glass etching cream to also put the owner’s name on the side of the casserole dish itself! No one will be able to accidentally keep these dishes!

And there you have it!

I can’t attest to the time for making these, as I did it in shifts and made four of them. I think making one would be a lot more manageable. The cost break down, including coupons but without my time is approximated here:

Fabric: $7
Heat-proof lining: $3.50
Strapping: $2.50
Casserole dish: $13
Wooden spoon: $5

Total: $31 + 10 hours/carrier.

If I paid myself $10 an hour I’d be rich.

And then I also had to invest in the tag materials, at about $10 and the wood burning tool was about $12. There was also the glass etching cream, another $15. Some of the time investment involved was doing things besides sewing, like making the tags, testing finishing methods, and wrestling with my sewing machine.

 

April 24th, 2014

the laundry closet

I originally bought this dark grey paint for my dining room. I wanted to paint the top half light blue and the bottom this lovely grey color. Unfortunately at the time the entire rest of my first floor was some shade of brown… and I wasn’t sure if/when I’d ever paint the other rooms… so I left the light brown in the dining room and tucked this can of paint away.

 

Living near Ikea is a curse and blessing. I can be there in 15 minutes, and I almost always check out the “as-is” section. Well… there was one day that the as-is section was filled with cupboards. I contemplated taking them all home for my craft room (I regret not doing this), then I couldn’t find enough doors (I could’ve bought doors from the regular section)… so I just took home two small upper cupboards to put in my laundry closet.

 

The curtains came with the house, and were always in the way. This room is actually our Rec Room, where we have work out equipment, an air hockey table, a fussball table, a full drum kit, and leather recliners. Not the prettiest room, but this laundry area was definitely an eye sore. The light fixture was original to the house too, trimmed in peeling gold metal.

I replaced the light fixture with a simple glass bowl with no metal visible. Painted the walls and ceiling of the closet, removed the painted-in shelf, and hung the two cupboards.

 

It looks a million times cleaner, and we don’t need the ugly curtains to hide the ugly laundry area! I still would like to put two shelves between the cupboard, to store prettier things (pretty laundry things?). I did this update back in November, and shortly there after started suffering the pain that would eventually be diagnosed with cancer. So things have kind of been on hold. Go figure.

One more picture, with the light on:

This total renovation cost me approximately $55.

1 gallon of paint: $24

2 as-is cupboards: $25

new light fixture: $5

 

I’ve budgeted about $20 to find the shelves to go in between the cupboards. Now that I’m starting to feel better, and especially when I’m done with chemo, I plan to finish this project so I can move on to other projects… like the blasted craft room.

April 23rd, 2014

the heart of a home

I less than a month we’ll have been home owners for two years. As a child I used to draw pictures – floor layouts – of my future home. I’d draw in the furniture then color them in. I was pretty intent on having a sucken living room that required a step down. Not sure why I thought that was a good idea. Regardless, we did not custom build our home. Some one did – as I’ve been told – but I did not. The first time I saw this house though, in picture form, it was true love. It went on the market on a Friday evening, we toured it Saturday morning and put our offer in that day. When you know, you know.

I love so much about this house, but one of the things I’ve never been a fan of is the paint colors. Our bedroom was a dingy yellow/gold/brown color, the dining room was a dark dark red, and the kitchen walls were painted brown. The brown went nicely with the tile they chose – but it was incredibly dark. Despite having four windows and a sky light, the kitchen suffered from what I like to call “perpetual depression”. It didn’t matter if it was high noon, the room was dark. I’ve got enough depressing stuff in my life, so it was time for a change.

My Mama bought the paint for me, and by chance one of my neighbors informed me that she was a big fan of painting. So much so that she actually volunteered to come help me paint! How often does that happen?!

Here’s a picture of my brown kitchen at the brightest hour of the day. The only hour we can be in there without lights on and not feel like it’s too dark,

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And a picture of the room at night, with Brandan doing the dishes. :)

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Those spotlights do weird things and the red lamps rarely got used because of how dark they were. Regardless…. it was a very dark room. But 1.5 gallons of paint later we have a much happier, brighter kitchen!

We had that blue rug in the garage so I pulled that in, otherwise this is the exact same room, same time as the first picture! I changed the red lamp shades out for clean cut white ones, and am much, much happier in this room. From the living room you can’t really see the kitchen, but there is so much light bouncing around that it even brightens the adjoining room! Brandan and I keep saying it feels like we’re on vacation. Like this is some one else’s bright white kitchen and we’re just hanging out in it. Best feeling for a kitchen ever!

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.