Tag: support

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Almost but not quite

Yesterday, I got unplugged from my Wonder Woman Power Pack, also known as the stylishly bedazzled fanny pack that I would wear home for 46 hours, after completing my bi-weekly infusion at the clinic.  The fanny pack contained a very powerful drug that has caused me all kinds of side effects.  And as of now, I am DONE with that drug and the rest of them.

It is a strange time, the days following the END of chemo.  Partly because, although the drugs have stopped dripping, the side effects are just ramping up.  You’re thrilled to be done, but still have a couple weeks of pain and suffering to endure.  You want to bust out the champagne and celebrate but your body is just not ready, so it’s a little bit anti-climactic.  The celebrations have to be delayed as your body begins to react to the latest (last!) round’s effects, head downward, then slowly, the trajectory changes and you’re on the upswing.  Can’t wait for that feeling!!  And as the the celebrations – woohoo, have I got plans!

It’s particularly strange because the last chemo treatment tends to be the worst, so you’re headed into slightly unknown territory at a time when your brain and soul just want to shout from the rooftops, sing at the top of your lungs, paint the town red, dance it out, party like it’s 1999.  So, this period of time requires a little patience.  I remember being very frustrated by this the last time I finished chemo, back in March of 2014.  I was so ready to get back to feeling normal, and it seemed to take FOREVER.  It was several weeks by the time I really started feeling more like myself.  You feel like the worst should be behind you, but you have to come to terms that it simply is not.

Right now, I’m tired, foggy, groggy, and I have quite a significant rash spreading in new places (it’s taken up residence on my neck and eyelids this week.)  My anti-nausea meds have kicked in and are doing their job, thankfully.  My skin is so dry, it’s crazy – my elbows look like they belong to an elderly gorilla.  Some unidentified person kindly sent me some products from Amazon to help soothe these issues (identify yourself so I can thank you!!!!)  I have these crazy infected finger and toe nails – I really need these to get better ASAP so I can start really training for the relay of the upcoming marathon.  My face is flushed and feels warm.  The rash on my hands looks like burn marks.  I have some sores in my mouth that make chewing tough, but I do have some medication for that, thankfully.  Slight heartburn has started, but I have meds for that, too, so we should be able to knock that out pretty soon.

So, right now, while all I want to do is celebrate, I am forced to downshift into a lower gear, rest, recharge, and continue to let others take care of me and my life for a little while longer.  I will be fighting the side effects and impatience.  I need your love and laughs and thoughtful kindness now more than ever – send me those funny YouTube videos, words of encouragement and anything else you think I need to get me through.  The end is near, but we’ve got a little ways to go!

While all of that is a little difficult, I continue to be incredibly grateful.  I have had some wonderful people step up and check on us, making sure we have what we need to get to the finish line.  I have had thoughtful coworkers put my needs above their own, and some who have sent powerful words of encouragement and promises to keep praying.  Some food has been delivered so I don’t have to cook – thank goodness!  I have gotten cards with kind words, letting me know we aren’t alone in this.

Well, I’m pretty sure my cat is nibbling on my lunch in the other room.  His way of letting me know I’m not alone, I suppose, haha!  Thank you to those of you who have kept up the support and care in these last weeks.  We are so appreciative of you understanding that it ain’t over ’til it’s over.  Thanks for being in this with us all the way.  Love to each of you!

 

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The best Weekend EVER.

What a weekend!

I had chemo yesterday and I am not feeling great.  But I have this past weekend to look back on to warm my heart.

Seven years ago, I was pregnant with Cassidy and stumbled across a web site called Babycenter.com  It is basically a site where you can go to get information about being pregnant and being a new mom.  You can create a profile and put a photo and some information about yourself like if it’s your first pregnancy, etc.  Then you can go into the “Community” part of the web site to interact with others who are pregnant.  You can join a “birth board” which is a group of women who are all pregnant and due the same month as you.  There are thousands of women on each birth board, and you can get kind of addicted, interacting, talking, arguing about breast feeding in public and elective c-sections.  Things can get dramatic and heated and it is in these threads that you find “your people.”  The women you connect with.  In my case, I seemed to gravitate toward funny, outspoken but sensible people.  Both the kind who were in the midst of the drama at times, and the ones who broke into those conversations with well timed senses of humor.

From those connecting moments, you got to know “your people” and would have private conversations through chat functions, and if you were lucky, like me, you got invited to private groups.  This is where the magic really happens.  I was on several private groups.  And people joined and would get into an argument and leave.  Groups would break up and regroup into smaller groups.  About the time the babies were born and crawling, things general got moved over to Facebook.  Once you’d been friends online with someone for a year, it seemed safe to let the non crazy ones into a more real part of your life.  So we moved our groups to Facebook.  Again, there have been changes, people leaving groups – I even got kind of kicked out of one once.  But what has lasted has been some of the friendships. I have met several of these girls individually, in “real life” as I’ve traveled or they have.  And it’s always been great.  No horrible “catfishing” stories of people actually being a 50 year, creepy man (this has happened, though not to us!) or someone scamming for money.  Well, I have witnessed that one but I, fortunately, didn’t get involved.

This weekend, 6 women came to visit me.  They could have gone anywhere, as the people I am friends with typically meet up once a year.  I haven’t been able to join them for various reasons including timing and the expense of travel.  But even though I haven’t been able to join them in other cities for these meet ups, this year, they came to me.  The weekend was truly epic.  We had an enormous amount of fun.  I got to show off our beautiful city.  We sang karaoke, toured the homeless shelter at Light of Life where I work.  We ate our way through the city at such places as Steel Cactus, The Yard, Enrico’s Biscotti, Hofbrauhouse, and visited other establishments such as Over the Bar and Lava Lounge.  We gave a homeless man a cannoli, We rode the incline.  We Uber’d all over the city.  We even ran into the mayor and he was nice enough to greet my friends and say nice things about me.  It was a really fun moment.

They loved our bridges and rivers, were perplexed by why we put french fries on our salads and sandwiches, were moved by the homeless shelter and were puzzled by why people wear black and gold even when it’s not game day.  They made me laugh a thousand times.  We had heartfelt conversations, took naps and walked many miles.  I felt so energized and refreshed by this visit.  These women are so funny, generous, adventurous and have bigger hearts than the Duquesne incline car.

Kristy, Jess, Barb, Nichole, Annette, Mandy – you ladies gave me the weekend of the year.  I’m so incredibly blessed by your friendships.  My life would be less full if I had never landed on the July 2009 birth board.

Here are some photos of a weekend to remember.

 

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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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Chemo Smackdown-O-Rama-Fest: Round 1

Morning of first chemo treatment.  Most people wear sweats.  I say, intimidate Stupid Cancer with fierce style.  It’s easier for me to stay upbeat and my usual charming self when I’m looking presentable.  Leopard print all the way.

We arrived at the treatment center and got hooked up via Mort the Port to an IV of pre-meds.  (Steroids and anti-nausea stuff.)  We then met with my doc, Dr. Mehta.  He gave us good news: my cancer has NOT spread.  They hadn’t assumed it had but its good to know concretely.  Also my blood work (white blood cells, etc. were all in normal ranges.)  **These are answers to prayer.**  When God answers our prayers so clearly – its worthy of a moment of our time and consideration.  We have to pause, acknowledge, give thanks.  He does not always answer with what we are looking for – sometimes the journey is longer than the one we planned for.  But sometimes we get a simple gift like this.  I am grateful.  I give thanks that this cancer hasn’t spiraled out of control.  There is an army in my body fighting it, and it’s doing an amazing job.  I’m thankful for my surgeon who did a difficult surgery well and removed what was visible.  Thank you, Lord for all of your provisions.  

So then we got hooked up to the real stuff.  Chemo.  Oxaliplatin is the big dog of chemo drugs that I’m taking.  So into Mort the Port it went.  It took about two hours.  It was uneventful.  During that time, I read funny texts from friends, watched videos on You Tube, ate some cheese and carrots and talked to Kevin.  They have a snack bar at the center.  It’s not very healthy which I think is weird.  A poor diet does not help in the cancer battle.  But I guess with chemo patients, whatever you can get down the hatch is good.  And sometimes that is Lance brand neon orange peanut butter crackers.  Blech. I tired to imagine how I could politely suggest some organic fruit or air popped non-GMO popcorn.  But…I want them to like me.  So I’ll bring my own snacks and Kevin can eat the cupcakes.
So they also gave me my oral pills.  I have to take five in the morning and five at night.  This drug is called Xeloda.  
Kevin meticulously filled my giant pill box for me.  He will almost certainly do this for me every week.  The fact is the man is significantly more responsible than I am in such matters.  That’s why he’s the precision baker and I’m the chef with full creative license.  Recipes, schmecipes.  So Kevin is the family pharmacist.
The infusion was complete and we left.  We were both hungry so we went to Mad Mex.  a friend’s response: did you really think Mexican was the best choice immediately following chemo?  Fair question.  First of all, I got black beans and rice and tofu in a dry tortilla so it wasn’t like I got the drippy, crazy meat-filled enchiladas.  I passed on the margaritas, too.  🙂  But I really haven’t felt super nauseous.  Just a little bit queasy.  So far, eating helps.  So bring on the tofu!
What I have had in terms of side effects in the past 24 hours have been with neuropathy/very high sensitivity to cold food/beverage and touching stuff that’s colder than room temp.  
The very bad thing that happened was when I took a huge swig of iced tea before I knew what would happen.  Awful. I felt like I drank Drano.  It scared me.  I had no idea what they meant when they said “cold sensitivity.”  It was pretty horrible.  Like trying to swallow a raisin that suddenly turned into a tiny porcupine.  All scratchy and spiky out of nowhere.  Also, strong tasting things like olives, vinegar and sharp cheeses do something weird to my mouth.  It feels like biting into a giant lemon.  That “sour” reflex is in overdrive somehow.
On the tactile front…touching something cold is like grabbing onto an electric fence.  It’s very strange to have your own body mess with you like that.  I’m so grateful to not be vomiting all day like some people do with chemo (fingers crossed on that one!)  But it’s weird and inconvenient to have to adjust what you eat, drink and touch.
Right now I’m feeling ok.  I’m a little bit apprehensive because I know that it gets worse before it gets better.  The last day has told me that I cannot predict what’s coming next and I don’t like that.  This may be the toughest one for me out of the 8 rounds, simply because its all a mystery.  Everything is fine and then my body betrays me.  I’ve spent 35 years in it.  It’s like if a good friend who has always been kind and dependable suddenly starts acting like a total bitch.  
So this is where we give ourselves a moment.  Acknowledge the difficulty.  Acknowledge the frustration.  Choose to accept it.  Then turn our thoughts and our hopes heaven-ward.  People say I’m strong.  I am.  It would be false humility to argue that.  I was raised to be strong.  I have experienced success that galvanizes my trust in my own abilities.  Whatever you’ve got, bring it.  I love a challenge and I plan to win.  It’s my job to get people to understand why they should give their hard earned dollars to help unemployed, homeless drug addicts.  I’m not selling sports cars to men in the midst of their mid-life crisis or pacifiers to desperate new moms.  Lets just say I’ve chosen a field where it’s not an easy sell.  A former supervisor once said about me “she could sell snow to the Eskimos.”  Well I’ve never tried.  But I would probably give it a shot.  
But I can’t do it all.  
I’ve gone as far as I can go on my own strength at the moment.  So “I lift my eyes up…up to the mountain.  Where does my help come from? My help comes from you – maker of heaven…creator of the earth.”  
So, I lean into God today.  Giving Him my anxieties and worries.  Believing He will provide whatever is needed at the most appropriate time.  Sometimes that comes in the form of a good test result, help from a loved one, a cheerful card, an unexpected moment of peace.  

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On the Eve of Chemo-Smackdown-O-Rama-Fest

I have been the receiver of a lot of love and support as of late.  I was thinking that it might be helpful to list the things that have been helpful, touching, appreciated, fun, needed, etc.  Maybe someone will Google “How to help someone with cancer” and this will be useful.  that being said…here are a few of my favorite things:

Prayer.  Seriously.  We (I and much of my crew) believe in God, who heals, who is with us, who comforts us.  Pray for me, but pray because connecting with the Creator is good for YOU, too.  
Food.  It is hard to cook.  Surgery takes a toll.  So will chemo.  I have a couple of freezer meals from kind people – it’s a relief to know they are there.
Checking in on my husband.  He is strong.  But he needs community, too.  The man is my hero.  Buy him a 6-pack of Guinness or just tell him he’s doing a great job.  
Offers of close friends/fam to shuffle my child off to do fun stuff.  Take her, please.  I love being near her.  But.  She’s an extrovert like me – she likes to go out and do stuff or hang with a cool loved one.  I can’t be super awesome to her right now.  So when you are, it rocks.
Texts to start the day with an encouraging word.  Morning after a tough night can bring hope but sometimes it’s just so blindingly bright and glaring and looks like a big uphill climb.  Under the covers, its warm and dark and quiet.  my heart has simply been unwilling to start the day sometimes.  Your words (you know who you are) are the “oomph” I’ve needed many times.  
Cards.  Holy moly, the cards.  I know how hard it is to get to the store, find a card that doesn’t suck, buy the card, locate a stamp, find the address.  Remember to mail it.  I get lost halfway most of the time.  So every card…I appreciate the full follow through.  You put me to shame!
Gift cards – so handy.  So generous.  I’ve also gotten some lovely personal gifts and I sincerely primarily appreciate the thought that goes into that.  I am amazed by how thoughtful and kind people are!   Gifts are never, ever expected – I have everything I need, really.  But your generosity has blown me away.  I feel so loved.  
Actually coming over and doing a chore or two.  This one is weird.  See.  It is basically impossible for me to call you and ask you to clean my house or do my laundry.  That’s tacky!  This whole experience is humbling me but I still can’t quite do that. It’s also so…vulnerable.  A couple of times, close, wonderful people have basically gone ahead and done stuff and it has been hard for me to be ok with it, but also…amazing.  There may be no greater expression of love than cheerfully cleaning someone’s toilet.  Not just anyone can wash my skivvies or scrub my kitchen floor.  But those in that tiny inner circle – you are awesome.  My advice is: everyone needs a few of those people…don’t hesitate to be that person for someone if you can.
Screen communication – immediately post surgery I had an appointed “PR” person.  This was so helpful.  She updated people and fielded questions.  I highly recommend this practice.  One less thing to worry about!
Asking me constantly what I need.  It changes!  Daily!  I am not going to call you and say “bring me some tea bags!”  But someone was wise enough to ask me constantly.  And…I really needed that tea.  🙂
Visits.  It makes me feel fantastic when you are kind enough to offer to visit me.  Hanging in my PJs, sharing a soy latte or coffee with a funny friend – the best way to spend an hour or two.  My two 60-something uncles stopped by one afternoon and we had such a great conversation.  Just text first so I’m not haggard.  That is stressful.
Music.  A couple people made me playlists.  It’s a really creative, fun way to show the love.  
Make me laugh.  Let me make you laugh.  I’ve got some pretty good tales of hospital mishaps and bathroom incidents if you’re up for them.
Stay positive.  I feel positive.  It’s wonderful to hear positive stories and why you know I’ll kick this things butt.  I love being reminded of the goodness of God.  I appreciate hearing that I have encouraged someone.  These are all helpful.
I share these thoughts not so anyone would feel compelled to do anything for me.  But to share my appreciation for all that has been done, and to provide insight into what might be helpful to others who are sick or recovering.  I know that in the past, I have often not known what to do.  I know better now – so I thought I’d pass that along.