Tag: chemo

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I'm so grateful

Tomorrow is my last day of chemo pills.  Wooooo!!!!

As I reflect, I have mixed emotions.  But one thing is for sure.  I am grateful to have (had?) cancer.  It might be gone or it might not.  Either way I’m grateful.  Here are a few things I’m thankful about:

I’m more convinced than ever that what I believe about how God loves us and that those who believe in Christ have much to look forward to beyond death.  To a significant extent, I’ve confronted my mortality.  I’ve faced, to a degree, the fear of death.  It’s not easy or simple or fun.  But.  I’m deeply convinced that God works all things for our good.  We can trust Him.
People have been so good to me.  Encouraging cards.  Funny texts.  Visits.  Foot rubs.  
Thoughtful gifts:  Shoes.  Homemade hats.  Tea.  Enormous scarf.  Coffee cup holder.  Home roasted coffee.  Books.  Journals.  Beard photos.  Wine.  Flowers.  Soup.  Chapstick.  A scarf worn by a courageous cancer survivor.  Lunches out.  Coffee mug.  Wonder Woman stuff.  Organic, fresh made juices.  Pizza.  The best Mac & Cheese I ever had.  The glove I left behind.  Reusable hand warmers.  Scratch off tickets. Gorgeous earrings.  A personalized tote.  Gift cards for food so I didn’t have to cook.  Popcorn.  Stuff from Whole Foods I’d never splurge on.  Cool necklaces.  Amazing stuff from Europe.  Bath stuff.  Awesome lotion – the best I’ve ever tried!  Dinner at nice restaurants.  
Support for my 5K – 101 donors so far!!
Sage advice.  
Prayers.  Serious, earth shaking prayers. What a gift to be prayed over.  
Cancer survivors/patients reaching out and pointing me in the right direction.  Showing me the way.  
Grace, mercy and patience when I haven’t been at my best.  
Perspective.  Nothing gives you perspective like a life threatening illness. 
The chance to learn how to support people who are going through something like this.  I had no idea before.  I have been remiss.  I won’t be again if I can help it.  
Thank you, if you’ve been there for us.  If you’ve visited, cooked, cleaned, watched our child, prayed for us, checked in on us, cared for us in some way.  Kicking cancer’s ass is a team sport.  Thanks for getting me this far.

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Almost done

I have three days (six doses) of chemo pills left.  For some reason this last week has seemed very long.  I think I felt like being done with IV chemo meant I would be quickly feeling back to normal.  But I’m still taking chemo.  And I have had a few (wonderful) out of town guests.  Which has made me choose to stay up too late.  Like basically every night for the past week. I need to take better care of myself this week if I have a prayer of running this crazy 5k in a month.  It feels kind of impossible.  But that’s kind of why I decided to do it.  🙂

I had such a great week, though.  Catching up with some very significant people in my life.  I’m so happy and grateful to have gotten to spend the time with them.  Old friends are often the best friends.  Plus I got to act like a tourist in Pittsburgh.  

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Chugging along

This week has been tough.   I think I’m getting impatient.  The end of my 8 cycles of chemo nears so I’m just ready to be done!  

I was inspired by the beautiful weather yesterday, so I decided to go for it with the run/walk.  A quarter-mile into my journey I realize that the cool air, though much warmer than it has been recently, was still really rough on my nose/throat.  It’s the strangest feeling. It’s 50° outside and it feels like I’m breathing in Arctic ice winds. It hurts.  It makes me feel like I have athsma. My hands went numb.  Then my feet.  Crap, I thought.  I felt nervous.  And a little scared.   I was jogging on a loop around my neighborhood and I was getting close to the halfway point, so there was really no turning back.  I thought about how silly it would be to call someone to come and get me.  Pride won out.  So, forward I went.  Every step was awful.  I cried a little bit, to be honest.  
I would like to tell you that I got home and felt great.  Invigorated.  Proud of myself.  In reality, I felt sick.  Really sick.  I overdid it.  I asked too much of my body.  And it frustrated me greatly.  A little over a mile and half did me in.  Dammit.  It sounds ridiculous!  I don’t want that.  I don’t want to be limited by this anymore.  I want my body and it’s energy back.  
I collapsed on my couch, feeling nauseous and defeated.  24 hours later, I’m still not fully recovered.  I feel all prickly and weird and sick.  And I’m torn, emotionally.  I want to kick this thing so hard in the ass.  I want to stand up to cancer and fight it down into the dirt.  I want to believe that nothing can get in my way.  I’m supposed to be Wonder Woman, right?
But part of strength and wisdom is knowing your limits.  Part of confidence is having the humility to grasp that you are vulnerable, imperfect and, in my case, not in top athletic condition.  
My lessons so far have primarily been about discovering my strength, my ability to weather this awful storm, to march forward, to shoulder a heavy burden and somehow keep going.  Frankly, I’ve amazed myself on more than a few occasions in little ways like keeping my head in the game through a three hour meeting while suppressing the urge to vomit.  Or getting out of bed to spend time with my kiddo.  
But yesterday, even though I completed my goal, I bumped up against a limit.  A wall.  I don’t like it.  It’s in my freaking way and I have shit to do.  But it’s there.  That’s reality.  
And I’m still me.  I’m still a warrior.  God is still on His throne.  Even if I have to limp around the wall instead of leap gracefully over it.
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Misery loves company…usually.

They say misery loves company. And admittedly, there are times, when you’re going through something difficult, that it is a relief to come across someone who is sharing that same struggle. 

There is a special relief that comes when you engage in that quiet conversation in the corner about something difficult, scary or private.  That conversation you have where you admit out loud for the first time that you have to do something to take care of the hair that grows on your upper lip (if you have Eastern European roots like me, anyway.)  The moment you blurt out that you’ve considered putting your child up for sale on EBay.  The time you confess that you Facebook stalk the girl your high school boyfriend dumped you for.  And mentally high five yourself because you are WAY BETTER by Facebook standards, anyway – more friends, more likes, cuter kids.  Take that, former cheerleader!  (Also, we will ALL agree to ignore the fact that she is still skinny and is a nuclear physicist.) 
This doesn’t apply just to embarrassing things.  For example, I love finding someone my age who manages a team in their job like I do.  And fellow curly haired ladies.  And U2 fanatics.  And even harder things.  If you get fired and you come across someone else – someone talented and smart and cool – who has been fired, it’s like a healing balm.  
I once worked, briefly, for a really difficult boss.  My fellow coworkers – we would all convene at happy hour to share our latest woes.  
So.  You find that person who knows exactly what you’re dealing with. It’s so gloriously freeing to share something.  But I have to say, whenever I hear about someone else getting cancer, my heart just breaks a little bit.  
A young woman I know, Katy, is embarking on her cancer journey today.  Chemo, day 1.  She is a strong, health-focused woman. A wife, a mom, a fitness coach, a business owner. And she’s young. Cancer has no business being in her body.
But cancer does not pay attention to our ideas of who seems immune.  It settles in where it wants to.  
So, while I wish to God it wasn’t cancer, I’m grateful to have something in common with this tough young lady.  To get to know her.  Because she’s really awesome.  And I’m grateful to be able to pass along a little of the kind of love and support my friend, Laura, gave out so generously.  Laura couldn’t talk very much toward the end, but I know if she’d had time and words to share, she would have told me to be positive, to not be afraid, and to encourage others along the way on this strange, difficult, frustrating, painful, ugly, challenging, beautiful, inspiring, edifying, messy, sad, happy, terrible, amazing journey. 
Please pray for Katy when you pray for me.  
We’re working really hard to make cancer our bitch.  But God’s the one who can do ALL things.  To Him be the glory.     
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At least I don't have tuberculosis

Last night I went to bed anxious that the impending snowstorm was going to wreak havoc on my already cumbersome commute.  I fretted about getting enough sleep (I’m coming off of a rough chemo weekend) and leaving early enough to get my Tuesday morning meeting.  

Interestingly, as I slept, I had a dream that I somehow contracted tuberculosis.  A doctor diagnosed me and when I told my family, coworkers and friends, they all insisted it wasn’t any big deal.  There was some obligation I was supposed to attend – an event or appointment or something – and everyone urged me to just go.  That I probably didn’t really have anything serious.  That it was silly to prioritize this minor problem.  The expectation was clear – go.  Be “on.”  Deliver.  

In this dream, I had a deadly, highly communicable disease, and I bowed to the pressure of expectations.  I typically don’t think much of dreams.  Mostly because mine are usually filled with mundane, normal stuff or complete, utter nonsense.  But this one seemed to have a message.
Sometimes I do not feel ok about resting, unplugging or eschewing my responsibilities.  Even in this season of my life. I don’t think it’s because people actually don’t let me.  I think I make assumptions about what is required of me.  And what people will think if I fall short.  
Don’t get me wrong – I take the breaks I need to…sometimes I’m just totally deflated and have nothing left.  But I never really feel ok about it.  I feel like I’m slacking, failing and letting everyone down.  I feel judged.  Again, it’s not anyone’s fault.  I own it.  
Sometimes I wish someone would send me away – see, I can’t send myself…someone actually sending me would be, I don’t know, permission. An allowance to unplug from my obligations.  
While a weekend at some lovely spa would be outstanding, it won’t fix my problem.  My problem, and this is absolutely not exclusive to cancer fighters, is that, sometimes, my worth is tied up in what I do.  How much I do.  How satisfied people are with my performance.  In all areas of life.
Do you do this to yourself, too?  If you think about somehow, magically, being totally free of obligations and expectation, does it make you want to just cry with relief?  
There’s good news, but it’s pretty blunt.  Jesus is the only answer to this.  My identify has to come from who I am as a child of God, wholly and dearly loved.  I am not good because I’m well behaved, productive, efficient and freshly showered.  I’m not valuable because I cook a decent vegetarian chili or can juggle 37 projects at once.  Those things are good and they make me ME.  But they aren’t what determine my worth.  My worth comes from He who created us.  I’m worth something because He says so.  Even if I’m laying on the couch eating a cronut.  
The tricky part is grappling with the feelings that come with falling short of people’s expectations.  Or, more accurately, the expectations I believe they have.  This is where it helps to have people around you that love you, and while they do want you to make your bed and go to work and send Aunt Martha a birthday card…they don’t love you because you checked off your chore list. They love you over and above and around your shortcomings.  
Once I was late to pick up my daughter from my parents’ house and I had a complete, total breakdown.  I was so afraid they would think I was being disrespectful, irresponsible, selfish.  But when I got there, a sloppy, messy, snot-filled, teary-eyed mess…I was met with grace.  
The other day I sent my husband into the snow to pick up some take-out I’d ordered for us.  Turns out, I placed our order at a different location of the Mexican chain – one 20 miles away.  When he called to tell me, I expected anger at my stupid mistake.  I had done almost nothing the entire weekend, so sick from chemo.  And the one thing I tried to do:  epic fail.  But my husband just took care of it and brought me my quesadilla anyway.  Grace.  
Grace is so sweet.  I expected ridicule.  But I was received lovingly.  And I was so relieved.  I was reminded of how God deals with me…daily.  If you want to really rock someone’s world, give them grace when they think they deserve your disapproval, your disappointment and your cold shoulder.

I’m working on my issues with fearing letting others down.  I’m working on remembering who we are in Christ.  Let’s be liberal in reminding each other of that. And liberal with our dispensing of grace.
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So…where have YOU been?

When you have cancer, some people just come out of the wood work. Of course there are the usual suspects – those family and friends that you know are with you no matter what. But, I am back in touch with some people that I honestly thought I would never hear from again. Some of my friends have become even better friends. Some people I always thought were kind of self-absorbed have really gone out of their way to reach out and show love and care. People who don’t owe me a thing have sent cards, letters and gifts. It’s incredible and I can’t overstate how grateful I am.

But here’s the other thing. Some people…don’t. There are a few people who have become conspicuously absent in the face of this disease. At first, it just hurts. Like…how could so-and-so disappear when I need them most? I mean, what kind of person shrinks into the shadows at a time like this? A selfish person! An uncaring person. A rude, thoughtless, hurtful person.

I’ve been thinking about this for a while. Because there is definitely a short list of those people for me. And every time I think of them, I am just flabbergasted that they haven’t been around. Some, it was immediate and abrupt. Have not heard a peep since the diagnosis. Others more so kind of have faded away. Again, I’m totally amazed and grateful for the support I have – it is significant and fulfilling and need-meeting and just incredible. But there are little holes in my heart where those absent people should be. People that I thought wanted to “do life together” no matter what.

It’s really kind of crappy to have this illness and the crappy treatment and also have the hurts associated with people who just can’t be bothered. The imperfect human part of my heart is hurt and mad. I want to unfriend them on facebook, say mean things about them and send them a box of dog poop in the mail.

But the Holy Spirit lives in me. And what He has to say is this: People are scared.

People are scared of cancer. Scared of sickness. Chemo. Vomiting. Bald people. (I’m not one of those bald people, but people think I am, especially those who haven’t seen me.) They are scared to see a friend sick and hurting. They are scared to potentially watch someone die. They are scared to get closer to someone who (through no fault of their own, it should be noted) just signed up for a crap load of pain, drama, inconvenience and changes. They are scared to GET CLOSER to someone who MIGHT NOT BE AROUND.

I understand. I know that feeling. I’ve watched someone die. And I definitely was faced with a choice at one point – to get closer even though I knew what the end might look like. And it didn’t end how I wanted it to. It was hard and sad and heartbreaking. It challenged my faith. It made me so sad it felt like pure anguish. BUT…I wouldn’t trade that experience for the world. To know that I was there means EVERYTHING. To know I didn’t shy away. I didn’t hide. I didn’t make excuses. I showed up. I brought pumpkin flavored coffee and rubbed feet and held hands and prayed. That doesn’t make me some special person. I’m only saying it because you know what? It made me BETTER. My heart is softer. And bigger. I love MORE because of that experience. I am blessed because I was there. And I would hate myself now if I had made a different choice.

So, if you’re faced with this situation, please consider a few things:

Your friend needs you. They notice you’re not around. TRUST ME. Sometimes us cancer people are forced to lay around and do very little but think, and sometimes our thoughts turn to those we miss.

If you haven’t been around and you think it’s too late now, IT IS NOT.

If you go, and you visit or call or whatever, it might be weird…but it might be FINE. It might be WONDERFUL.

If you bite the bullet and dive in even in the face of fear, you’ll learn a lot of things – what suffering looks like, how to love someone going through something hard, how to think of someone besides yourself, what strengths you have that you didn’t even know you had. How to show love when you are totally incapable of fixing what is wrong.

If you don’t, you will regret it. Whether they get better or not. I mean, seriously?! Do you really want to be that jagoff who ran for the hills at the face of adversity? (It never ends well for that character in the movie.)

And if you’re in the suffering seat – if you have the cancer or the tragedy or the crisis and you feel a little bit abandoned, consider this:

It’s not that they don’t love you. It’s just that they are terrified and they don’t know what to do. Pray for them. Do your best to forgive them and try to understand – they are broken; something inside them is a little wonky and they probably don’t know how to fix it.

And finally, I say to those of you who have dived in head first – with me or with other people that you love – especially if it scared you….you are the heroes. You are a blessing. You have made something terrible much, much easier.

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Brief Relief

I got great news on Thursday.  My cancer has not, thus far, found another place to take up residence in my body.  Put another way, no new tumors.  This is a huge relief and cause for celebration.  I am so grateful.  

But I’m also dealing with my worst post-chemo side effects so far.  This time it really wiped me out.  I slept at least half of the weekend and today, Monday, I am searching hard for some energy because I have a work related obligation this afternoon that cannot be missed.  Unfortunate timing.    
So my thoughts and feelings are this crazy jumble of gratitude and deep annoyance.  I’m so glad the cancer hasn’t spread.  And I’m so sick of going through this crap.  
When I start to feel sorry for myself, I know I need to get my head screwed back on straight.  So here’s what I do:
Give myself permission to vent or whine just a little bit to someone who can handle it and isn’t going to give me advice.  It might just be a couple very honest texts to someone who will welcome my transparency.  But I get it out in a way that I feel heard.
Stop the whining.  It’s ok for a little bit but I’m not into say, a whining lifestyle.  You can easily become a whiner without even realizing it, so, reel it in.  
Pinpoint the problem.  What is really getting to me?  Nausea? Cabin fever? Aches and pains? The frustration of only being able to drink warm beverages when all I want is icy cold ginger ale.  Identify the problem and address it if possible.  
Once earthly measures have been taken, I sit quietly before God and complain to Him.  Sometimes I am more polite and thank Him for some things first and note His holiness and such.  Other times I just let it out.  And I ask for help.  
This is not like submitting a request and having it fulfilled right away in the particular manner I prefer.  We do get tempted to think of our relationship with God as rather transactional, don’t we?  Behave, ask nicely, and get what you asked for.  My experience is that this is not typically how it works because we are not always asking for the best things.  It’s ok for me to ask God to relieve my nausea.  Maybe He will, but if He doesn’t, it’s because there is a purpose in this that I’m not privy to.   
The Bible is full of stories of suffering turning to glory.  Joseph, Job, Jesus.  It’s a perpetual theme.  There is purpose in our suffering.  So when the suffering does not subside upon our request, we have to be content that God is with us, and this will be worked out for our good. And that some glory lies on the other side. 
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Tomorrow

Tomorrow is round 5 of chemo.  That’s not what’s on my mind, though.  Tomorrow I get the results of my CT scan.  Basically we’ll find out if my cancer is spreading or not.  It feels big.  Like I might be plunged into a scarier place than I already am.  

But a good scan this month doesn’t mean I’ll never have a bad one.  People get cancer, get better, and then get it again.  Two years later or ten years later.  Some people have 20 cancer free years and then have a stroke.  Some perfectly healthy person is going to get hit by the bus.  Or bitten by the snake.  Or choke on some Skittles.  
What I’m saying is while I am praying and hoping for good news tomorrow, I’m not putting my hope in scans or news from a doctor.  They matter, of course.  But they aren’t final.  There is always something dreadful to fear if you don’t put your hope and faith in something bigger and better and more significant than any earthly thing.  
I’m tempted to put my hope in the scan results.  I know I’ll feel relieved by good news and scared of bad news.  But I choose to trust God no matter what lies ahead.  I’m not all that good at it, mind you.  My emotions can flail in the wind like anyone’s.  But I come back to the truth that God is worthy of our trust and works all things for our good no matter how outrageously crazy and unfair some things may feel.  He knows more.  He knows better. I’m in His capable hands.  
In the Scriptures He promises “when you pass through the waters, I will be with you.”  That’s better than the admittedly sought after good news of a clean scan.  Way better.  I want that good news.  I really do.  But what I want more is unshakable faith – to understand who God is so much that no news can undermine my trust in Him.  I’m not there yet, but I’m moving in the right direction.  Are you?
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The world is amazing. People are awesome.

It’s true that there are some real jerks out there. The guy who cuts you off in traffic. The jagoff who doesn’t hold the door for you when you have your arms full and a four year old in tow. The cashier who seemingly joyfully closes her lane just as you walk up to the register. That Succop kicker guy who single handedly ruined the Steelers chances at the playoffs (ok, ok, it was their own doing, I know.)

But let me tell ya something. People are also really awesome. Here are some examples:

The nurse who jokes around with me when she pokes through my skin to access the port in my chest to administer poison and steal samples of my blood to the extent that I look forward to seeing her.

My mother who helps take my mind off the icky stuff going into my veins by chatting, letting me teach her stuff about her iPhone and playing games like Scrabble.

My dad who reads my mind and makes homemade, ridiculously good chicken soup.

My husband who plays pharmacist (did you take your pills?) housekeeper, chef and World’s Best Dad while I’m out of commission.

The owners of this place and the owner of these places and this web site who all donated to my crazy 5K fundraising project, which you can learn about here Seriously, go learn about it and donate. I am the number one fundraiser of the WHOLE MARATHON right now. Go look now before someone ousts me (which is definitely going to happen.)

This lady. She is ridiculously awesome. Excellent writer. Funny as all get out. Lover of Pittsburgh. Friend of the homeless and sick children. Generous beyond measure.

Also tons of individual friends have donated, bringing me significant joy. (and a sense of “oh crap, I really need to run this race to avoid public shame!”)

My friend who I haven’t seen in about 15 years, who made me two handmade hats for the cold weather!

The friends who have sent me tea – the only thing I can drink during Chemo Weekend. We are having The Pittsburgh Tea Party when this crap is over and done with.

The friends who have given me cool scarves to wear because the cold air just is horrible.

The staff on my team who have sailed the ship beautifully while the captain is barfing below deck.

Senders of cards and packages – you have no idea how this brightens my day!! Mail time (Blues Clues reference for the parents out there) is the best!

The friend who sent me the GREATEST LOTION KNOWN TO MAN that is keeping my hands and feet from horrific side effects from one of my chemo meds. This lotion is magical. So is this friend.

The friend who has three biological kids, five adopted kids and a full time job who cooked me freezer meals and got me a Wonder Woman snuggie – this woman deserves an award!!!

The friends who have whisked my child away to do fun stuff.

People who read and share my blog. I am still blown away that anyone besides my mom reads this.

So, you…I say to you…

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Fighting cancer and homelessness

Running has always been this elusive sport for me.  I’ve always been reasonably competent at any sport I’ve spent time playing.  I can hit the occasional 3 pointer in basketball and I can probably beat most of you in a swimming race.  But this body just isn’t designed for running.  Which is what makes me want to run.

I started running 5k races about two years ago.  I trained with an iPhone app and did ok.  I completed 5 races in about 18 months.  Some of them, I walked some of the way.  Those hills just kill me!!  

When my health problems became apparent, I backed off of the running.  When the surgeries began, I had to quit entirely.  I spent the whole autumn season retired from anything more than a walk around the block here and there.  When the chemo began, even that became impossible, partly due to fatigue and partly due to the cold becoming totally intolerable. So I’ve shifted from running to chemo treatments, lounging and cat snuggling.

 

I started to get really sick of this crap.  So I set a goal.  I would, come hell or high water, do the 5k of the Pittsburgh Marathon.  
The race commences four weeks after my (hopefully) final IV infusion and  two weeks after my (hopefully) final dose of chemo pills are swallowed.  This means I have to train while I’m getting chemo.
This is both exhilarating and terrifying.  What a badass thing to do!  What if I fail?  What if I have to crawl across the finish line?  
You know what, though?  I choose to reject fear and live out of hope.  The belief that by God’s grace and my determination and the support of those who love me, I WILL DO THIS.
I’m determined.  Look how fiercely determined my eye is.

Here’s the other cool part.  You can help in a big way.  By making a donation to my fundraising page you will 1. Motivate and encourage me.  And 2. Support my cause of choice – Light of Life Rescue Mission where lives of poor and homeless men, women and children are turned around daily.  
Here is the link.  If you can’t click it, just copy and paste into your browser. 
 http://www.crowdrise.com/lightoflifepittsburgh2014/fundraiser/jessimarsh
I am asking for your support.  It’s a good cause.
Also?  At this moment I am the TOP fundraiser for the entire marathon!!  Let’s see how long I can hold the title!!