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.

 

 

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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 4: PET scan & Bone Marrow Biopsy

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

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

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

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

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

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

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

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

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

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

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

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

pause.

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

play.

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

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

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

So I’m now officially Stage 3.

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

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



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

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

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

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

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

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

Just out of surgery and feeling okay.

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

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

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

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

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

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

_____
_____

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

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

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

“Ginny-baby.”

“Oh? I thought your name was Ginny!”

“No! I’m your Ginny-baby.”

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

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

 

She’s a goober.

_______________________
_______________________

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

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

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

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

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

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Chapter 3: I’m not that strong.

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

______________________

______________________

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

_______________________

_______________________

 

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

 

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Chapter 2: finding the right place

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

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

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

“As thin as Kelly?”

“If that makes you happy, then yes.”

“As thin as Sarah?”

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

“What if I dyed my hair blond?”

A non-commital shrug.

“Blue?”

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

“What if I go bald?”

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

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

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

“I don’t care about that.”

“I do.”

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

___________________

___________________

 

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

1. The Port

2. The Bone Marrow Biopsy

3. The New Doctor

 

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

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

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

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

 

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

 

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

 

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

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

 

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

warm and buttery – just the way she likes it.

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

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

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

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

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

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

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

Understandable.

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

 

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

 

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

 

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

My toddler loves a good selfie!

 

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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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it’s cold here.

 

 

It didn’t get above 16 degrees outside today. I thought I loved the cold, but I’m not so into having it be so cold without getting to go skiing. Thankfully I can still put Ginny in snow bibs and marvel at the cuteness that is toddlers and snow. 🙂

 

 

 

One morning this week I came downstairs and Ginny had insisted on all of her “friends” eating breakfast with her. I love that Daddy obliged this request. You’re only two years old once!

And then this is just Ginny and I heading out for some errands. I knit that blue hat this autumn. She’s so proud of it, and loves reminding me that I made it for her. My little lovely. 🙂

 

Those little boots kill me too. They are hand-me-down-borrows from her best friend and I think they’re adorable. Plus, when we do have snow, they are legit warm. So cute and practical!

And lastly: Ginny is a big fan of “selfies”. When she sees herself on the screen she always comes up with the biggest cheesy grins!

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Ginny lately.

This chick-a-dee owns my heart.

A few nights ago she woke up and then promptly threw up. It was a rough night, and we spent a lot of time over the following 24 hours just chilling, watching Mickey Mouse, and snuggling.

When she has trouble sleeping we set up her little travel cot in our room. She’s a bed hog and can’t sleep in bed with us (unless you like getting kicked in the head… which I don’t enjoy… so we don’t).

Of course, the dangers of getting sick – she missed tumble time this week. We might go to the open play later this week – but it’s not as fun as the class. Here’s Ginny and her little best friend at tumble time last week. G loves it, and she likes talking about it and asking if it’s time to go to tumble time. Sheesh.

Any way – just thankful my little is feeling better. Of course… while she was sick she was happy to just chill, which meant… more sewing time. Bitter-sweet, but I’m glad she’s getting back to herself – the silly goose.

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times and seasons

I’ve been listening to a lot of Christmas music lately. Yes – I realize it’s not even Thanksgiving yet. The thing is, it’s kind of my motivational music right now. Like an enforced crunch time. Like listening to fast paced music when you run. Well… when I’m working on Christmas presents I like to listen to Christmas music. It gets me in the mood and reminds me why I am re-threading my bobbin for the hundredth time today.

Turns out an entire dust rabbit was hiding in there. I’m also out of that canned air spray stuff. Naturally. I also tightened the tension down there and magically everything worked perfectly! Magic!

I also had to pull out my label maker. It’s probably my favorite little tool. I use it… often. In any case – I typically have to pull the book out to remember what the little symbols all stand for. I definitely had this problem with my serger… that’s a different story though. It is also labelled now.

Win!

So while I fought the good fight with my sewing machine, I planned out some nice holiday-inspired activities for my sweet husband and Ginny. First there was finger painting…

That lasted for a while. We don’t pull those paints out very often. She was excited and disgusted at the same time. She kept wanting to wash her hands. Silly girl.

After painting her and B-man whipped up a batch of cookies. Yes. It was adorable.

And I finally got to do some sewing.

I’m actually really super excited about the gifts I’m making for the ladies on my husband’s side of the family. I don’t know if any of them follow my blog, so I can’t post pictures of the finished objects yet, but I am giddy. 🙂

It was so holiday-esque on Sunday that I actually considered getting and Christmas tree before Thanksgiving. That didn’t happen. But it almost did.

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sleep when the baby sleeps (07/11)

New moms are often told to sleep when the baby sleeps. Honestly – it’s great yet impractical advice. I was lucky though. At the time B-man worked from home exclusively so I had help 24/7. It meant that I really could sleep when the baby slept, because my sweet husband made up for everything I wasn’t doing. So whenever Ginny would fall asleep… it was very likely that I would fall asleep too – nursing always made me tired.

So tiny. I can still feel her little 7 pound body against me. I miss being able to hold her like this. Her tiny butt makes it look like I have HUGE man hands!

This never happened on purpose, and I know some people would say I spoiled her by letting her sleep on me – but to those people I say “poo poo!”. I love that she spent the first several months of her life right next to me. Now that my non-snuggly baby can move around I feel deprived!

In this picture she is swaddled, and I’m actually mostly sitting up. And that’s the flowery pillow I’ve been sleeping with since I replaced my childhood stuffed animal with it… in high school.

A shout-out to B-man… I’m thankful he captured these moments for me. I love that I have so many pictures of me and Ginny (these are just a few among them). I don’t have many pictures of myself with my mother, so it was one of my priorities. Thankfully my husband took the job and captured a bunch of sweet moments.

And now the mish-mash of leftover July 2011 pictures:

These little pajamas were my favorite. They had a little elephant on them and the footsies were so precious. I liked them so much I actually bought them in every size. *for shame!*

 

Ginny meeting her cousins for the first time. The little boy there is just a year older than her, and we got together to celebrate his birthday. She spent a majority of the time sleeping, or nursing, or sleeping.

Pissed off baby. This is actually the hiccup face. That poor chicky had hiccups almost 90% of the time.

Obviously this was so long ago that I don’t remember the story behind the screams, but this kiddo was super good at being pissed off. For the record: she still is.

After her first ride home we had to make a mad dash to target to get a smaller neck support. Also note that my 1-2 week old baby has a clip in her hair. Because she had SO MUCH HAIR!

First family lunch date. lol. We went to Chili’s because I was sick of eating hot dogs and simple stuff. Ginny slept the whole time… so you could say she was really well behaved.

Sleep.

More sleep.

Squished up sleeping.

 

When she had thrush she couldn’t nurse well and wouldn’t take the pacified, but sucking on my finger seemed to calm her. So I tucked her into my shirt (that’s a thing, right?) and just snuggled her. 🙂

And this last picture is kind of precious to me. B-man was sitting on the couch while I nursed Ginny and he looked over and said “You look so pretty.” I laughed – I was exhausted and felt pretty crappy. He said “No wait, I’ll show you!”. So he snapped this picture and showed it to me. I don’t think it’s a particularly flattering picture, but it means a lot to me because it means he sees more in me that I see in myself. He loves me even when I’m a bit rough and worn out. It should also be noted that I covered up for this picture. I didn’t usually use a cover in my own home.

 

And so I’ve caught up the first… two weeks… of my daughter’s life. Only 2 years to go! I’m going to try and mix it up a little more, but I had these posts all planned out, and my camera is being difficult so I have yet to coax it into giving me my more recent pictures that I wanted to blog.

 

 

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rub-a-dub-tub (07/11)

So normally you don’t bath your newborn until their little cord falls off. Unless they have a mop of hair that is getting kind of questionable looking. Then you give them a sponge bath and wash that hair.

 

Wash, wash, wash!

 

She was a very expressive newborn – she’s still very expressive. She was also a very focused newborn. I think she must’ve been born with completely functioning eyes because she could track things a lot earlier than “normal” and she had pretty decent neck control for a less than 2 week old baby.

I look at this picture and think “HUH!?”. Sure – her face is weird, but I weighed less than 200 pounds in this picture. Which is almost 50 pounds less than I weigh right now (and almost 70 pounds less than what I weighed two months ago). I could blame it on nursing – because nursing made me ridiculously hungry – but a lot of it was just laziness and trying to keep things simple. Clearly it took me two years to get my life back under my own control. Waaah.

The best part about post-bath-baby was the ridiculously fluffy hair. It was, in a word, awesome. Soft and sticking straight up. And a thumbs up for a successful first bath.

Of course, the post-cord-falling-off-first-bath was a bit more traumatizing. We didn’t have a special baby bath tub, so we just lined out bathroom sink with a towel, then put warm water in the sink. It seemed like a nice way to do it, right? Cushy? Ginny did not agree.

 

Well… she liked it so much she didn’t want us to take her out of the bath.

I can still hear her screeching in my mind’s ear. That’s a thing right?

Aaaand… we’re all good again.

 

 

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at the hospital – 07/13/2011

Prepare to be inundated with baby pictures. I wobbled back and forth about whether I wanted to post lots of pictures of Ginny, but when it comes down to it this blog is kind of like my life scrapbook, and I would most certainly have pictures of my daughter in my scrapbook. In an effort to make up for not blogging for two years I’m going to be posting old pictures, and trying to remember the stories behind them.

Our second family picture:

 

The numbers are iffy. But I count the first picture of her on my chest as the “first” one – but that one involves a very dirty baby and a lot of emotions on my face. I don’t actually like looking at it because it just says “motherhood is terrifying!”. Which may be true, but isn’t the important part. The important part is that my child was born with enough have to tie a bow in it. That right there is a piece of yarn – not a velcro bow. And it is actually tied around a handful of Ginny’s newborn hair.

Yes I had ridiculous heartburn the entire time I was pregnant, why do you ask?

 

 

Because of the few mishaps we experienced when Ginny was born (meconium, long labor, and that she stopped breathing the first time I tried to nurse her), we ended up staying an extra night. Technically I should’ve been discharged, but the nurse there said that my insurance would cover the second day and  it would be easier to have the room while we waited for all of the double-checks on the baby and stuff. During that day there was a lot of crying. For Ginny – not me. Shots, blood tests, breathing tests, hearing, etc. It was also a day of much visitation.

I’m going to be honest: It never occurred to me that people would send flowers. And balloons! But the morning after Ginny’s birth we had a beautiful display. Three from my husband’s family, and one from my Dad’s work. lol.

Daddy, Mommy, & Ginny

Especially in the beginning people would comment on how much she looked like me. I think they were thrown off by the hair. Apart from the hair all I see if B-man. Look at those cheeks! Those are most certainly my husband’s cheeks.

Next we’ll go down the roll:

B’s Dad

B’s Mom
My Mom
My Dad

Additionally my grandparents and then B-man’s brother and SIL stopped by as well.

My Dad was actually there in the afternoon as we were checking out of the hospital. He left work early to come and help us get everything back into the car, get home, and get settled. He was kind of the underdog of this whole experience. I didn’t think I would want my Dad there. When he showed up with my Mom I was a little weirded out – but I am so incredibly thankful that he was there.

She looked so tiny buckled into the carseat. Her head flopped to one side and the buckles seemed to encapsulate her. We drove home, then headed into our apartment. Since my family consisted of mostly minors at the time, and minors were not allowed into the maternity wing unless they were siblings of the newborn, none of my siblings were able to visit in the hospital. Instead we went home, got settled, and then called my Mom to bring everyone over.  We ordered some pizzas and every body took turns holding Ginny. I can’t find the pictures from this – but I swear it happened.

So that covers from the night Ginny was born, until we took her home. It’s just the beginning. 🙂

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