friendship – ALS Fact of the Day~

warriors…

Tonight is not about me. Tonight is not about my journey, or those around me…at least not in regards to ALS.

Tonight is about her.

Her bravery, her strength. Her beauty and love that shines through her eyes and her smile. She tells me I am the courageous one, but I wonder if she ever stops long enough to look in the mirror. She is battling something she has little control over. The only choice she has is follow the doctor’s orders…and pray.

And still, she keeps moving…one foot in front of the other. She keeps pushing forward and she keeps fighting. They have drugged her and cut into her body. They have poisoned her, day after day… and still, she keeps pushing forward.

They give her statistics and case studies, and long tedious answers about the latest therapies, and percentages… and still, she keeps pushing forward.

She usually hides behind her wit and her charm. Her smile and her charisma. But tonight, she shared a piece of her soul.I can’t take any credit for it, I wish I could. Because when people show up, and are real, and jump up and down and say,

“Hello world, look at me!”

they shine brighter than any star. And she has always had a presence about her, the kind of natural charm that most women envy and men desire. But tonight, she stood up, and shone bright for all the world to see.

I am not moved to tears often and this one left me rocked to my core.

Kristina ~ I am so incredibly grateful you are in my life. You are all that any woman aspires to be. You are brilliant and kind, and you show grit and determination when others would have buckled by now. Trust me, telling your story is not vulnerable. It is gut-wrenching…and it is beautiful.

The world needs more women with your strength and your grace. I can only hope to one day shine as brightly as you do…

>>>>>>>Here is just a small piece of her story…>>>>>>>>>>>>>>>>

How do you get through two radiation treatments in one day? Two spa treatments, of course! That’s the positive side.

Here’s the ugly side. One week and a half left, if my skin can take it. If my mental health can take it. They said radiation makes you tired. There’s no physical reason. It’s definitely mental.

Every day you go in, partially disrobe and lie down on a hard table. Arms are stretched above your head, goggles on. The entire time three to four people move about the room, aligning you, adjusting you, drawing on you, radiating you.

Arms go numb from the awkward position, but you can’t move. You itch, but you can’t scratch.

“Breathe, hold it. Ok breathe. Let’s do it again. This time hit the middle of the box. Now we’re ready. Let’s go!”

And repeat multiple times. The breath holds are challenging for me. Sometimes I wiggle my fingers so they can see in the camera that I’m about to pass out. Holding your breath pushes the heart down and out of the way of the beam. Nobody wants a radiated heart. I certainly don’t. When I breathe, a yellow bar rises. I’m to hit the center of a green box above it. It looks like an Atari game in my goggles.

I’m frustrated when I don’t hit the precise spot they want me to hit. So frustrated that sometimes my eyes well up. When I feel the water trickle down the side of my face I get even more frustrated.

“Hold it together.”

It’s become my inner chant.

It’s all quick. 15 to 20 minutes most days. But it seems longer. I’m tired after. God I’m tired. Not because I do anything, but because I’m confronted with The Cancer every day. I’m confronted with my mortality every day.

It’s exhausting. I lie there, my chest ravaged and my skin so red, peeled and on fire it hurts to move. I’m exposed and it’s uncomfortable, awkward and cold. Then I’m done. I hop off the table and wave my tingling arm.

“See you all tomorrow”

and I go put on my clothes. I look in the changing room mirror examining my angry battle wounds. Who is this person? How the hell did she get here? I slather on Aquafor and off I go. Some days I just walk out as if nothing happened. Other times I linger to dry my eyes.

I’ve never fully cried there, but I’ve come close many times. I save it for when I’m alone. Instead I suck it up and tell myself

“Hold it together.”

It works. I hop into an Uber and either head to the airport or to a place here in Seattle, depending on the day of the week. Sometimes I walk, if I’m close enough. I did today. I like those days. I get into my head and get closer to God. That’s daily radiation.

Although today I slipped in two glorious spa treatments … just because. Most of my posts about this topic are generally positive. I’m not nor have I ever been comfortable being vulnerable. So I tend not to share that side. But I’m inspired by a woman who so often shows the vulnerable side and I have learned a lot through her and her honest -sometimes brutally so – insights into ALS and the journey she and her husband are on. Theresa Whitlock-Wild shows me daily that it’s ok to drop the veil, to be honest and vulnerable and then gather up the strength and continue the damn fight.

Thank you T.

So this post is meant to share a little insight into my journey and the journey of so many of us who have, had and will have breast cancer. I think about my cancer sisters who have gone through radiation before me and I want to hug them tonight. I know what misery they went through. They are warriors. I think about all the women who will go through this after me, not just the radiation but all of it. They don’t yet know it. But they will be warriors, too.

#igotthis

The sacrifice we all make

Gayle Forman Quote: “Sacrifice, that's what we do for the people ...

Welcome to our world!

Please, come in and make yourself comfortable. Now I realize that at this very moment you might be feeling a bit out of control. All the feelings floating throughout your body are completely understandable. After all, you have been told that there is something that is out there… Something that is completely unseen, but it is deadly. And this will, without a doubt, completely affect the rest of your life.

These are difficult times, for sure. I can also relate to some of that fear you might be feeling. The fear you are feeling is similar to what we were feeling that February, late afternoon, all those years ago. Matthew was diagnosed with ALS five years ago. A disease that is still untreatable, uncurable and unstoppable. No matter how much I read, or tried to prepare, the fear was still there.

Five years? Can you believe it? Time kept marching on, whether I wanted it to or not. And still, the silent, and invisible disease known as ALS, is unstoppable. It continues to move silently, wreaking havoc on his body, as well as the thousands of other bodies around the globe. Matthew has passed the “average” time that most people live with ALS. The average lifespan for someone diagnosed with ALS is three years. He is now in the 10% of people who live past five years. Only 10% percent of patients live past 5 years. Only around 5% to 7 % live past the 10 – year anniversary.

This time might be a little uncomfortable for many of you. Trust me, it’s not every day that you are told that the chances of you losing a loved one are so high. This unknown has the potential to affect you, and everyone around you in some way, in the not too far distant future.

This time is scary, no doubt about it. Thankfully, you do have some control in how this plays out. Unfortunately, for caregivers and people with what they call “underlying conditions,” our anxiety just shot up about a million times higher.

We already live a life of quarantine. We stay away from people who are sick, even when we risk offending our family members and friends who may not understand that a simple cold or the flu bug can potentially kill the person we love. We seldom went out in public for months before this virus became the sensational talk of the town. The effort it takes to go out wasn’t always worth it. To make matters so much worse, there is now something out there that is deadlier than a flu bug or cold that we have to prepare against. So our days of going out are far less than ever before.

I have reached out to so many other ALS families, asking how they are doing. The almost funny part about this entire situation is that if you are a caregiver or a person living with a terminal disease, or suffer from a compromised immune system, then you know our life really hasn’t changed all that much.

I imagine for most of you, the idea of being cooped up in your home for weeks seems impossible and horrid. I stopped being excited about Friday or Saturday nights years ago. Depending on the weather, the season or even if Matthew was fatigued or feeling anxious about being in public, we were housebound. Over the last two years especially, our life has increasingly become more and more reclusive. Some of that is because of the disease, and some of that, I assume is because of how we are mentally handling all the parts that aren’t talked about when it comes to a terminal illness.

I picked up the phone to call a dear friend the other day. I asked how her children were doing. Her answer; the only difference in their lives are that they aren’t going to school. Other than that, they have been housebound for years! YEARS! At one point during her husband’s illness, she was begging to leave her house for one hour a week.

Yes, you read that right. ONE HOUR A WEEK!

She spent years housebound, caring for her dying husband and her children.

I have another friend whose husband was so stubborn that he refused to use a power wheelchair. Even though he had lost the strength to safely walk long distances. To compensate for his stubbornness, she would maneuver him carefully and slowly, every single day into his recliner, help him eat, use the restroom, and attend to his needs at his beck and call. She was housebound for years as well. She would hire caregivers to help out, but the process of the paperwork, and training someone to care for her husband, and what to do if he choked and could they safely help him without hurting themselves or him became a serious point of contention. I imagine it was tedious as the wife, because after all the effort of hiring new caregivers, it often resulted in them leaving after a few weeks, if they even made it that long. Once he finally agreed to using a wheelchair, they found a little freedom for a short while, at least. And for a short while, photos of their family enjoying restaurants and some lovely drives to look at the scenery were once again on their Facebook feed.

They are back to being fully quarantined, while she is the only caregiver, and mother of two young girls. She sees to all their needs, and no one will be able to cross their threshold for quite some time. Maybe it’s a good thing she was already well trained in being housebound for weeks at a time?

Several other families said that besides worrying about a shortage of toilet paper, they really don’t have the opportunity to go out anyway, so a quarantine situation simply means that they can’t allow anyone into their homes. They hadn’t really changed anything else in their lives, and no one really came by to visit anyway.

Where am I going with all of this?

Your world is turned upside down. You are being asked to completely rearrange your life. You are shut off from your friends and family and there is no where to go. You might be angry, even disbelieving what is happening. There has to be a better way, right? Maybe you are sad at the thought of your livelihood completely changing, and you have no idea what this will look like once it is all over.

Trust me, I get it!

Once Matthew was diagnosed with ALS, I had this set of preconceived notions. I thought I knew how people would react, how they should help and how the disease would progress. I planned for every possible scenario…and yet, no matter how much I worried and stressed about all the possible outcomes, it still never played out the way I thought it would.

I am scared.

This virus will absolutely be fatal to my husband. No doubt about it. ALS has affected his diaphragm, and his lungs are only functioning at about 30% of a normal person’s capacity as it is. I have a very vivid imagination, and the thought of an ambulance taking him away and I would never get to see him again or be there for him is petrifying. Add the absolute panic that this will affect my children, and I am beyond a doubt, not liking the images playing through my mind daily.

I am scared for my children and my parents and for all my loved ones. I can absolutely admit that with no shame.

However, I have learned that I have little control in how this plays out. We are only letting a select few enter our home, and even that may come to an end soon. We are trying to give scientists time, and the people who know what they are doing precious time.

Time.

It has always been the enemy for us. Because as the years go by, it means Matthew would be that much closer to becoming a statistic for an ALS chart. But now, we are hoping and praying for time to slow down once again. Not just for us, but for all of those who are out there, trying to protect, and to stall an invisible enemy. Time for resources to become available, and time for people to rest and heal, come together, and most importantly, work together.

And now, this time…. You are getting a small snippet of what it is like to become a full-time caregiver. You are getting to experience just a little bit of what it is like to live a life caring for someone else. To have no ability to leave, no one else to lean on. To lose connections with your friends. To have your world shrink.

The only difference is that this time, we are all living the same experience. Many caregivers had watched the lives around those around them continue, as theirs had progressively shrunk. They watched with envy, maybe even jealousy and a bit of anger, as those around them continued with their lives, unaware, as the caregiver watched from the sidelines, coveting their freedom. This time, everyone around us will be making sacrifices, and it will not be an easy transition.

This time, you are now in it with us. And I can’t tell you how sorry I am that you are experiencing this. That we are all experiencing this together. And I can only hope that in time, we will see that this sacrifice was worth it. The same sacrifice that every caregiver makes when they can no longer simply walk out the door or walk up a flight of stairs. To come and go, to experience life in all its beauty, that so many take for granted on a daily basis.

Keep searching for gratitude, look around you and remember the blessings you have. And remember your “why.” Offer help if you can, and snuggle in with those in your lives. Who knows how long this will go on. But remember, it will be worth it if you remember why you are doing this.

We sacrifice to be there for those we love the most.

❤ Matthew Wild

dinnertime…

Image result for images of family dinner time sayings

It’s my favorite part of the day.

The evening is winding down. Books are scattered across the table as my studious child is bent over a book, brow furrowed in concentration. The other one is running in and out, doors slamming, as he tries to sneak past me once again. The dogs are watching, waiting for a small morsel to drop. I am laughing as I try swatting at my son to stay out of the pantry. He rushes just out of reach, a triumphant smile across his face.

It’s almost time for dinner.

The sound of onions and mushrooms sautéing in the pan. Fluid motions of chopping, the rhythmic sound of the knife slicing and dicing. With the flick of a wrist, the food is absorbing the heat and sizzle and beginning to meld into a meal. The smells are wafting into the house, and the sounds of laughter are mingling with the sounds of footsteps. My children are gathering around the table. Dinner is almost ready.

Matthew sits patiently, quietly. His chair turned towards me. He loves to watch me cook. I know this about him.

Even on days when I barely have the energy to move, if my children are gathered around the table and I am cooking, I am in my happy place.

It was a subtle sound. I didn’t even hear it at first.

As I am setting the table, my back is turned as I am dishing up pasta into a serving bowl. My focus on gathering everything to take to the table.

There it is again.

I glance up, twisting my neck to see behind me.

Matthew’s face is red. His eyes are bulging.

He is sputtering.

Kaden and Peyton’s eyes widen.

My son jumps up.

“Matt, are you ok?” I can hear the panic in his little voice.

I set everything in my arms down, but Kaden is already rushing off towards the bedroom. Peyton is standing up out of her chair, unsure of what she can do to help. I am walking quickly towards the bedroom, ready to grab the machine if Kaden is struggling.

Matthews face has gone from red to purple. He is trying to cough, but there is no sound. A small wheezing gasp is all that can be heard.

Kaden comes running towards me, cough assist in hand. I can see the look of terror on his face as he glances from Matthew to me.

I smile, trying to reassure him that Matthew will be fine.

I press the “on” button, balancing the machine against my thigh, as I juggle the hose and mouthpiece. It is taking forever to switch on. I slowly count to three out loud. More for Matthew’s sake, to help him to remain calm and that he will be able to breathe again soon, than for myself.

“One….Two…Three”

Finally, the “swoosh” sound begins, indicating it is ready.

Matthew leans towards me, pushing his face into the plastic covering that encompasses his nose and mouth. The familiar sound as the machine forces the air in…then out fills the air.

After several deep breathes, Matthew leans back into his chair, relief across his features. His face is still red. Tears streaming down his cheeks. Snot dripping from his nose.

I set the machine down, grab a rag and begin to clean him.

This is automatic. This is not the first time he has choked on his own spit….and it will not be the last.

I glance at my children, frozen in place. I give Peyton an encouraging glance and ask her to keep telling me about her day. Looks of terror on their little faces slowly dissipate and I can see their chest begin to rise. They are only now realizing that they were holding their breathe.

And just like that, life returns to normal.

Our normal.

“So” I say, “What was the best part of your day?”

connections….

She must have noticed how my face fell in disappointment as my head turned, first to the right, and then to the left of me. I had run into the store to grab a prescription, leaving everyone waiting in the car. As I went to close my door, he asks me to quickly grab him something as well.

I nod my head, irritated as I hurry inside.

Matthew had a craving for Reese’s Peanut Butter Cups lately and asked me to grab a few. I tried to remind him that we had plenty of M&M’s and Kit Kats at the house, sitting in the freezer. The kids had been gone for several days, so the candy hadn’t been gobbled up just yet. But, no, his craving was specific, and judging from previous experience, if I don’t acquiesce, than the craving builds into some incredible hunger monster of epic proportions, often resulting in his “Go BIG or go home” philosophy that ends up with him miserable and having a stomach ache.

Now, I am standing there, prescription paid for in one hand, and three king sized Reese’s packages in the other, hoping to get through the checkout in a minute or two…not the twenty minutes it looked as if it were going to take, judging by the long line of full grocery carts in front of me.

“Would you like to go in front of me?”

I looked up into a sweet face, waving for me to come closer.

“That would be great, thank you!”

I squeezed in between the cart and her, sucking in my stomach as I did this, shuffling my feet in a strange dance as I place the candy bars down on the conveyor belt. In full disclosure, sucking in my stomach does not, in fact, make my ass any smaller as I try this…but it is always worth a try.

I had noticed, as this older lady and I had done our strange shuffle dance, that she had a bandage just under her shirt. I assume it is a port, and I try to glance away quickly so as not to make her uncomfortable that I had been staring. My eyes venture over to the stacks of pizza boxes and frozen egg rolls, and various other over-processed foods. Maybe she has a Matthew at home as well.

She reaches over to rearrange the food, smiling.

“My grandsons are coming over tonight for a sleep over. They are bringing some friends and instead of cooking, I am hoping this might be enough to fill them up for a while!”

I know all too well how hard it is to feed the never-ending pit of teenage appetites. I learn that her grandsons are in their teenage years but still love coming over to Grandma’s house. I share with her I how I can’t wait to become a grandma!

Wait!

I quickly clarify that I can in fact wait, as my oldest is not quite 18 years old, but that I am looking forward to spoiling babies…only handing them back when I am done!

She mentions that she has enjoyed having her grandbabies over since she moved her almost thirteen years ago.

We talk more about parenting and the joys of kids.

She tells me how perfect her grandkids are. I nod, telling her that my children are also pretty perfect.

“It’s the parents, you know.” She leans in to tell me this as if it’s a secret between us. I laugh, telling her I don’t think I had much to do with it. I was really just blessed with great kids.

“When people tell me that kids today are awful, I just don’t agree! It’s the PARENTS that are awful!”

I can’t help but agree with her a bit on this.

She mentions the cancer.

She is doing really well with the chemo. In fact, today was her anniversary and she celebrated by having another chemo round. Her husband wasn’t doing anything to celebrate, but she seems content with feeding teenage boys with copious amounts of junk food.

She proudly pats the stylish grey bob on her head, “I did lose my hair, but I have plenty still to spare!”

I tell her I am sorry but that I am glad she is still feeling so well.

“It was more emotionally hard seeing all the other patients come in, looking sicker and sicker with each round.”

I nod in agreement again. I have no experience with that, but I can imagine it must be really scary and difficult not knowing.
She says how thankful she is, because she knows it can be worse.

I mention that my husband has ALS but that I have learned to find even the smallest things to be grateful for.

Her eyes widen, and then fall as they fill with sadness, her hand squeezing my forearm.

She gets it…

I give her a small smile, trying to comfort her as she tries to apologize for something she has no control over.

I don’t have any person experience with cancer. I know people who have had cancer. I knew people who have passed from cancer, but my experience with having a close loved one with cancer and caring for them is next to nothing.

However, there is something comforting about looking into another person’s eyes and finding compassion and understanding.

For just a moment, two complete strangers were able to connect about how life isn’t fair, but that joy can still be found in the love for family, a few boxes of pizza and maybe a Reese’s peanut butter cup or two.

And that craving of Matthew’s?

Yeah, those king-sized bars made their way into the freezer, along the other piles of junk food…

Matthew Wild

T.M.I.

Disclaimer*** TMI!

If bodily functions make you queasy…I suggest you just keep on scrolling…Nothing to see here…

************

Almost five years ago, when I tepidly decided we could date, but that I really wasn’t looking for a serious relationship at the moment, I had no idea the adventure I was headed towards with Matthew.

Take for example shortly after we began dating. Matthew thought it would be great to take a quick weekend and explore Glacier National Park.

Having no children of his own, we packed up my (then) 6, 8, and 13-year-old children for a fun excursion. Things were off to an awesome start. Fun things to see, hiking and all the smells and sights, in majestic mountains. After day 1, we headed into Whitefish for dinner. I believe Yelp was the go-to app that directed us to a lovely café, on a beautiful street filled with quaint stores, and all the Montana paraphernalia a person could buy.

I remember the kids chose the customary mac and cheese dinners, while Matthew went with a burger and fries.

I chose a warmed spinach salad.

A healthy and delicious meal that I smugly ate, assured in my choices to help my waistline as well a great example to my growing children.

A decision I quickly began to regret.

In less than an hour, my stomach was rolling and gurgling…a sure sign I had food poisoning.

Now, if you know anything about me, then you would know that bodily functions are something I don’t want to announce. So with all the strength of an elephant, I shakily kept my face neutral, while the goosebumps spread across my skin and the sweat broke out across my upper lip and forehead. I quietly prayed I was wrong, and this was just a little stomach bug and nothing more. This would pass, I know it would. I would not throw up. The very idea was ludicrous!

I forged ahead, willing my stomach to hold its contents and not embarrass me in front of my boyfriend on our very first vacation together. And, in less than an hour I knew what was coming, and I was hoping against hope that my body would not embarrass me with what was sure to be an eruption of epic proportions.

Thankfully, I was able to hold it together until they were asleep. Then I hastily crept into the bathroom, running the shower water and sink water, and expelling, quite violently, all the remnants of the rotten, warmed spinach salad.

This event lasted well into the wee hours of the morning. I remember gingerly placing the small waste basket, unassuming to the poor passer-bys, outside the hotel door for the poor housekeepers that morning. I don’t even want to go into details of what happened, but let’s just say, it was violent and from both ends… And poor Matthew…he had to load up three children and myself, weak and unable to move, to drive the five hours back home.

Now fast forward three months after that…

My first trip to Cabo San Lucas! My first vacation in I don’t know how many years.

Matthew has, as usual, planned the most amazing time to be experienced. We went on bottomless boat rides, and sunset cruises. We had drinks on the balcony and walked the beach, watching the sun melt into the ocean.

It was perfect…

He excitedly grabbed my hand one evening, wanting to show me the very location where he personally partied the night away with the very famous Sammy Hagar as well as various other celebrities. His eyes lit up like a school boy at Christmas as he excitedly showing me where he sat, drinking and dancing with wealthy socialites and bodyguards, and how he was invited to the after party, long after most people would have called it a night.

The place was called Cabo Wabo. Maybe you have heard of it?

He ordered his usual Coors Light and three tacos.

He raved about these tacos.The flavors and the fact that we just had to try them…

They were good, I guess. Nothing too mind blowing that I can remember. The atmosphere was fun, but I guess without Sammy Hagar, it was just another one of those overly hyped up locations in a tourist trap. And the tacos?

The damn tacos gave us E. Coli that lasted at least fourteen days.

Yep..the same thing that happened to me just three months earlier, only 100x worse!

Only this time…we both were sick…

The rest of the vacation was spent staying within ten feet of any bathroom…and we both were walking a bit funny after the rest of the week, when our bathroom breaks were still happening at least every ten to twenty minutes..

It was less embarrassing, since we were both suffering together, I guess.

You might be asking yourself why I am telling you all this…

Well, I think the Poopy Curse has struck again.

Let me just give you the little by-play last night.

11:00 Pm – I finally close my eyes.

12:00Am – Matthew needs adjusted.

2:30 am – he groans. I sit him up. He tells me his stomach is gurgling. We wait a few minutes. He seems content to go back to sleep.

I lay there for a while. I can’t fall back asleep. I grab my phone. I know better, but I catch up on the news, and waste away an hour. Finally, I set my phone down and close my eyes…

3:30 am – He moans again. He needs to use the bathroom.. ASAP!

Well, shit!

I left the hoyer lift in the trailer. Bad planning on my part.

I quickly dress and run outside into the parking lot, unlock the door and wheel it out. Quickly, I throw the deadbolt back on the hatch and hurry as quickly as possible back into the room.

If you haven’t figured out by now, bodily functions while having ALS is a process…and never a quick one.

Without going into too much detail lets just say, there were sad eyes, apologies and a lot of gagging on my part…and his. And a lot of groaning from him, and comforting words on my behalf

(btw..how I had three children and changed diapers daily is beyond me! I can do anything…literally, I can handle anything…but poop!)

The damn waste basket was put outside the hotel door again. A pile of towels, and about two hours later, Matthew was all cleaned up again.

When we had checked into the hotel that evening, there had been a mistake and we were placed into a regular room. At the last minute, I switched our rooms. (Just in case, I told myself.) There was just no room to move around. After the last two hours, I was so thankful I made that switch..or the mess would have been much worse.

And the kids…yeah, they slept through the entire ordeal!

5:30 am – I close my eyes and finally sleep

7:00 am – my children are giggling, ready for the day to begin

I am determined not to let a little lack of sleep ruin Day two of our vacation!

We load up and are right on schedule!

Well, shit!

Matthew has to poop again. ( I groan a bit inwardly here, not gonna lie..)

Deep breath…Okay, no biggie…

I send the kids out to begin loading up the trailer.

As this is early in the morning, we have plenty of time to make Crater Lake and then a short drive to our hotel in Klamath CA.

I wheel the hoyer lift out to the parking lot…determined not to make that mistake again!

I pull the deadbolt key out of my pocket. Ready to hit the road, the kids are bouncing around, feeding the local chipmunk and being generally goofy.

The damn key won’t fit.

Well, Shit!

In my rush last night to get the hoyer, I had slammed the deadbolt on upside down. Now the key won’t fit in the hole.

Freaking wonderful.

The maintenance man is summoned. After about thirty minutes, he moseys along, hacksaw in hand.

With a shake of his hand, and a $20 bill, I tell him I appreciate his help. He seems to take it in stride and gives me a toothless grin in return for the tip.

Okay, NOW we are on our way. An hour and a half behind schedule now, but all’s well that ends well!

A quick stop for another deadbolt, and we are off!

Kids still have no idea where we are headed or what adventure awaits.

Crater Lake was breathtaking!

Souvenirs are purchased, and without WiFi or a map, and the wrong turn, we finally figure out we were going in the wrong direction for 45-minutes!! Ok, NOW we are finally going towards our next destination!

The Redwood National Forest!

We stop for gas, a quick stretch and a pee break.

The kids and I run in, as I am ushering them through the aisles, sending them towards the snack aisle. FInally, I make my way towards the restroom.

I fumble with the top button of my pants, my mind scattered, trying to hurry so as not to leave Matthew alone in the car for too long, and make sure this time we are headed in the right direction. My jeans are shimmied down and..

Plop!

My cell phone, which was in my back pocket of my jeans, lands in the toilet bowl…

Well, shit!

****Disclaimer #2

Day 2 of Vacation is still awesome! Even with all the little unplanned for quirks!

slowly, they all just disappeared…

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You didn’t think it would happen. Not to you. You had it all. You had a loving and supportive family. Siblings and cousins you saw or talked to almost every day. You had friends. Friends who grew up right down the street from you, buddies who had gone through thick and thin with you.

Slowly, so slowly at first, it seemed almost as if you might be imagining it all.

First, the words of condolences.

“I am so sorry you are going through this.”

“I heard about the diagnosis. I am so sorry.”

Next, they see you out and about, but instead of the happy greeting you would normally get, they avert their eyes. You sort of stop. Unsure of how to proceed. You see them look away. You clearly make them uncomfortable now. They are hoping you don’t call out or draw attention to them. They duck, they turn away, they do anything to avoid having to face you.

It seems awkward at first. You take it personally. You feel as if you have inconvenienced them in some way, but you aren’t sure how.. After a while, it becomes such a common occurrence, you do them the courtesy of simply not even looking in their direction.

The pain is less sharp with every ripped page of a calendar month. It seems that time has a way of helping you adapt. You adapt to the loss of mobility. You adapt to losing your independence. You adapt to losing camaraderie with co-workers you used to see daily. You simply adapt to losing something, each and every day.

You think you have managed to come to terms with all the changes, but then you realize that the changes never stop.
After your body has morphed into something you no longer recognize, and you only slightly look like the person you used to be, you must now adapt to a new challenge. The friends and family you hold so dear. have all just slowly dropped out of sight. You had no idea that this is the part that would test you.

You thought dealing with the disease would be the hardest thing you would ever have to deal with, but you discovered you were wrong.

The hardest part, in fact, would be watching everyone around that you love move on with their lives, and all you can do is stare at a screen and watch it all happen.

You do everything in your power not to click on that icon, you try so hard to stay away from social media.

You don’t need to be reminded of all the Christmas parties, the weddings or the birthday celebrations that you are no longer invited to.

You don’t get to be included in the phone calls, or the invites for a drink to commiserate a friend’s breakup or loss of their favorite sport teams championship game.

The connection is gone.

Funny that you didn’t notice at first. You were so focused on the loss of your legs, you hadn’t noticed that those friends who used to talk to you every day, haven’t reached out in almost a year now. No one has stopped by to visit in so long, and you don’t even bother asking for visitors. They all promised, but its been so long, you finally quit anticipating anyone knocking on the door.

The invitations you had gotten were either to someplace that cannot accommodate your new situation, or it was a pity invitation. At least, you assume it is a pity invitation, so you politely decline. You feel you have done everyone a favor by not going.

You thought the disease would be what caused your body to stop functioning. Now, you no longer believe that. Your heart is breaking, and you begin to imagine that it is possible to die from a broken heart.

If you had only known the disease would not be the hardest part to deal with. You found out the most difficult part of each day would be to live and then die from isolation, depression and sadness. The ability to see all those people you once had a connection with, posting pictures of their lives, their loves, and their ups and downs, but you somehow, realize that you were forgotten.

You want to turn away, but you so desperately need to feel as if you are still worthy of their time or effort.
Now, you scour the internet, Facebook, Instagram, Twitter…anything that connects you in some way to the people you used to know. The anger is gone. Now, you simply want a connection with them. Even if the only link to them again is by pressing the “like” button.

a woman’s strength…

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Tonight is not about me.

Tonight is not about my journey, or those around me…at least not in regards to ALS.

Tonight is about her.

Her bravery, her strength. Her beauty and love that shines through her eyes and her smile.

She tells me I am the courageous one, but I wonder if she ever stops long enough to look in the mirror. She is battling something she has little control over. The only choice she has is follow the doctor’s orders…and pray.

And still, she keeps moving…one foot in front of the other. She keeps pushing forward and she keeps fighting.

They have drugged her and cut into her body. They have poisoned her, day after day… and still, she keeps pushing forward. They give her statistics and case studies, and long tedious answers about the latest therapies, and percentages… and still, she keeps pushing forward.

She usually hides behind her wit and her charm. Her smile and her charisma. But tonight, she shared a piece of her soul.
I can’t take any credit for it, I wish I could. Because when people show up, and are real, and jump up and down and say,

“Hello world, look at me!”

I am not moved to tears often and this one left me rocked to my core.

The world needs more women with your strength and your grace.

I can only hope to one day shine as brightly as you do…

******************************************************************************

Here is just a small piece of her story…

How do you get through two radiation treatments in one day? Two spa treatments, of course!

That’s the positive side. Here’s the ugly side.

One week and a half left, if my skin can take it. If my mental health can take it. They said radiation makes you tired.
There’s no physical reason. It’s definitely mental.

Arms go numb from the awkward position, but you can’t move. You itch, but you can’t scratch.

“Breathe, hold it. Ok breathe. Let’s do it again. This time hit the middle of the box. Now we’re ready. Let’s go!”

And repeat multiple times.

The breath holds are challenging for me. Sometimes I wiggle my fingers so they can see in the camera that I’m about to pass out. Holding your breath pushes the heart down and out of the way of the beam. Nobody wants a radiated heart. I certainly don’t.

When I breathe, a yellow bar rises. I’m to hit the center of a green box above it. It looks like an Atari game in my goggles.

It’s all quick. 15 to 20 minutes most days. But it seems longer.

I’m tired after. God I’m tired. Not because I do anything, but because I’m confronted with The Cancer every day. I’m confronted with my mortality every day. It’s exhausting.

I lie there, my chest ravaged and my skin so red, peeled and on fire it hurts to move. I’m exposed and it’s uncomfortable, awkward and cold.

Then I’m done. I hop off the table and wave my tingling arm. “See you all tomorrow” and I go put on my clothes.

I look in the changing room mirror examining my angry battle wounds. Who is this person? How the hell did she get here? I slather on Aquafor and off I go.

Some days I just walk out as if nothing happened. Other times I linger to dry my eyes. I’ve never fully cried there, but I’ve come close many times. I save it for when I’m alone. Instead I suck it up and tell myself “Hold it together.” It works.

I hop into an Uber and either head to the airport or to a place here in Seattle, depending on the day of the week. Sometimes I walk, if I’m close enough. I did today. I like those days. I get into my head and get closer to God.

That’s daily radiation. Although today I slipped in two glorious spa treatments … just because.

Most of my posts about this topic are generally positive. I’m not nor have I ever been comfortable being vulnerable. So I tend not to share that side. But I’m inspired by a woman who so often shows the vulnerable side and I have learned a lot through her and her honest -sometimes brutally so – insights into ALS and the journey she and her husband are on. Theresa Whitlock-Wild shows me daily that it’s ok to drop the veil, to be honest and vulnerable and then gather up the strength and continue the damn fight. Thank you T. ❤️

So this post is meant to share a little insight into my journey and the journey of so many of us who have, had and will have breast cancer.

I think about my cancer sisters who have gone through radiation before me and I want to hug them tonight. I know what misery they went through. They are warriors.

I think about all the women who will go through this after me, not just the radiation but all of it.

They don’t yet know it. But they will be warriors, too.

#igotthis

Nightly routines…

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It is the same process, every single night.

Mundane…sameness…always the same monotonous events that take place for bedtime.

Brush his teeth, but don’t use the minty toothpaste. He doesn’t like that one.
Wash his face, but only in certain spots. It makes him chilly to have his face damp.
Use a q-tip and scratch the itches his fingers can no longer reach. He gets that look in his eye when you find that good spot, not unlike a dog feels when you hit the magic spot.
Use a bit of tissue, and pick at his nose. (I used to feel squeamish getting up in each nostril, but now, my stomach doesn’t even do a little flip flop as my fingers go up and wiggle around, the tissue swiping at any loose snot balls.)
One medicine for anxiety, one for sadness. One that is supposed to slow down his progression. We know two out of three of those meds work for certain.
Pour a capful of white powder and swirl around until dissolved. (It helps him poop.)
Place the pills in his mouth, his tongue is twitching again. Quickly lift the thickened water to his lips.
Remove his lap blanket and place the hand-held urinal between his legs. Push his legs apart so that he pees in the urinal and not all over himself.
Roll into the bedroom and start a machine. The clicking of air, pushing in and out, his cheeks puffed, as he coughs. (The cough is weaker now. Nothing much ever comes out. I can’t tell if I should be thankful for that or not.)
He tells me he thinks he may be getting sick. His throat hurts and he feels warm. I tell him he isn’t getting sick and deep down I silently pray I am right.
Grab the giant metal arm, attach the loops and hit the button. The arm pulls him up and out of his wheelchair. His ass scrapes along his controller, again. I seem to do that every night. He gives me a pouty face, as I apologize…again.
My face turns red as I pull and twist the metal contraption over towards the bed.
Grab the remote for the bed to lift the headboard up, as I simultaneously lower the metal arm down on the bed. Push with my shoulders, and pull his legs out straight, so he doesn’t cramp.

Pay attention, Theresa!

Don’t sit him too high or too low. Keep the headboard at a little less than 90 degrees, just the way he likes it. Unhook the loops, pull the metal arm away from the bed. Tuck it back into the shower, where we can hide it and pretend for just a few hours that it is not a necessary tool for me to move him to and fro.
Pull the straps and the sling out from under him.
He winces.
Place the bandaid over the bridge of his nose. It looks raw and sore again.
The mask goes on next. Hit the ON button. It screeches to life.
Find the remote for the headboard, which is now buried between his legs and blankets. The dog is laying by his feet. The dog isn’t much help.
Laying him slowly back, there is one more thing. Scratches…
Grab the baby powder by the night stand
Dump it anywhere there is a crevice. (I’ll save you the embarrassment of describing all the places that baby powder goes.)
Attempt to roll him onto his side. Not before he whines. He wants scratchy time to last longer. I do not
Check for pressure sores. On the back of his legs and his buttocks.

I grunt again…I swear he is more square than he is round.

Get his leg pillow just right between his legs. Adjust his head pillow to match. (He asks me to push him more. He isn’t on his side all the way. He will tip back over if he isn’t just so. Several more attempts. Several more grunts)

I give one more hard push…

“OWWW, I think you did something to my back!”

I panic! My eyes scanning his body. I can’t imagine what happened. I pause looking him over, his butt cheeks out in the open, legs bent

“I don’t think my legs work anymore!”
Then he giggles.
Rolling my eyes when I realize he was trying to be funny.
“Ok, I am going to go lock up.” I say, as I pad barefoot out of the bedroom.
“I’ll be right here!” He yells.
“Don’t move!” I yell back.
I shake my head with a little grin.
It is always the same thing…every single night.

It’s what we do.

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Today is the last day of November. It is also the last day to recognize caregivers. November is the designated month to celebrate the caregivers in our lives.

And much like what it can feel like to be a caregiver, the month went by with little recognition. And that is okay.

Most of us don’t do it for the praise, or the pat on the back. We certainly can’t say we do it for the money or the fame. We do this for someone we care about, someone we love.

But, for just a moment, I want to give you a peek inside the life of a caregiver.

• We get interrupted sleep, and we seldom (if ever) sleep a full 8 hours.

• We eat our meals last, or even standing up, in a rush to move onto the next check item on our to-do list

• We juggle so many things at once, we have a hard time focusing.

• We coordinate, organize or rearrange our schedule to take care of everyone else.

• Sometimes, we want to think of ourselves, but then feel guilty for it.

• We worry…all the time.

• We sometimes feel overwhelmed at the responsibility of caring for another.

• We have a rash of emotions that spread over us quickly, and yes, sometimes they might seem irrational. Don’t worry, the feelings dissipate quickly.

• Showers become the only private time we get to ourselves…

• We are the advocate, and the voice and the warrior for the person we care for.

• We have moments of selfishness, of wanting to not to have to think of, or put another person over ourselves all the time.

• We remember how much we love the person we are caring for, and somehow, all those emotions, and the weight of what we do seems less heavy for just a while.

• We often feel alone.

• We cry in the shower because the sound of the water washes our tears and drowns out our anguish.

• We smile through the irritations, or frustrations…and yes, even through the pain.

• We can’t imagine not trying so hard.

• We live with guilt over not being enough…every.single.day.

• We know that this role we play won’t last forever.

• We hate being told it’s not about us….

• We get irritated when others try to give us advice but have no real-life experience with the same situation.

• Seeing our loved one smile can make the frustrations and hardships more bearable.

• We would still make this choice, if it means just one more day with those we love.

Remember, you will either be a caregiver or need a caregiver at some point in your life.

If you know a caregiver, show some empathy and compassion. It’s a tough job.

If you need a caregiver, show some empathy and compassion, it’s a tough job!

Matthew Wild

he said, she said…

He said, “Wow! It’s nice to meet you!”

She said, “hello….”

He said, “We have a mutual friend.”

She said, “She invited me to come listen to the music with her.”

He said, “I am glad you could make it”

She said, “Thank you. I don’t get out often.”

He said, “Can I buy you a drink?”

She said, “no thank you”

He said, “Its been months, how are you?”

She said, “The summer went by too fast”

He said, “Can I buy you a drink this time?”

She said, “Sure, I would love a water!”

He said, “It’s loud in here”.

She said, “WHAT?”

He said, “Do you like live music?”

She said, “Yes, It’s my favorite!”

He said, “You came with her again?”

She said, “I’m her designated driver.”

He said, “Here is your water.”

She said, “Would you dance with me?”

He said, “yes”

She said, “You can DANCE!”

He said, “Wow, so can you!”

He said, “Will I see you again?”

She said, “Maybe…”

He said, “I haven’t seen you in weeks, where have you been?”

She said, “My life is complicated….

He said, “What do you do?”

She said, “I go to school”

He said, “would you like to go dancing?”

She said, “ok”

He said, “Are you seeing anyone?”

She said, “No…and I want to keep it that way!”

He said, “Why?”

She said, “I am recently separated.”

He said, “I was married for a long time too”

She said, “I have children”

He said, “I bet they are great!”

She said, “You aren’t my type”

He said, “I know, but can we keep dancing?”

She said, “Yes, I would like that…”

He said, “We have been dancing every month for almost a year now!”

She said, “I just want to be friends…”

He said, “I know…”

She said, “I’m not ready for a relationship.”

He said, “I understand. I am happy just being your friend.”

She said, “Thank you for being such a great friend to me”

He said, “Who are you here with?

She said, “I am here on a date tonight”

He said, “Do you like him?

She said, “I don’t know yet”

He said, “That guy shouldn’t be flirting with your friends”

She said, “I guess he wasn’t that into me”

He said, “He’s an idiot”

She said, “Thank you”

He said, “You deserve better!”

She said, “I agree..”

He said, “I like spending time with you”

She said, “I need to take things really slow”

He said, “Of course”

She said, “I think you are looking for more than I am ready to give.”

He said, “I have all the time in the world.”

She said, “What’s wrong with your fingers?”

He said, “Nothing, I am sure it’s nothing”

She said, “I am not ready”

He said, “I’ll wait.”

She said, “Please go to the doctor.”

He said, “Go to Cabo with me!”

She said, “I am a single mother, I can’t go to Mexico!”

He said, “It would mean so much to me!”

She said, “Will you go to the doctor?”

He said, “Of course, as soon as we get back!”

She said, “Its beautiful here!”

He said, “Thank you for coming with me.”

She said, “What did the doctor say?”

He said, “He wants to run some tests…”

She said, “It is going to be alright…”

He said, “I have ALS”

She said, “I know”

He said, “I’m scared.”

She said, “Me too”

He said, “Maybe you should leave?”

She said, “I promise I will stay”

He said, “Will you spend the rest of my life with me?”

She said, “Yes”

He said, “My legs are getting weaker…”

She said, “We need to find a new home”

He said, “I want to marry you and dance with you on our wedding day.”

She said, “There isn’t much time.”

He said, “I am sorry we are rushing things.”

She said, “I am sorry that the last time we danced was on our wedding day…”

He said, “I don’t want to use the wheelchair.”

She said, “It’s there when you are ready…”

He said, “I can’t lift my arms anymore.”

She said, “It’s okay, I am right here…”

He said, “Don’t worry, we are going to be alright…”

She said, “I don’t know how to ask for help”

He said, “Neither do I”

She said, “I don’t know if I can do this alone.”

He said, “I feel like a burden.”

She said, “You are not a burden.”

He said, “Happy Anniversary!”

She said, “It’s been 3 years?”

He said, “Its going by too fast”

She said, “I feel so alone”

He said, “So do I…“

She said, “I never get to go out or do anything anymore”

He said, “Neither do I”

She said, “I didn’t think it would be this hard”

He said, “Neither did I”

She said, “I miss being held.”

He said, “I miss touching you.”

She said, “Where did everybody go?

He said, “I don’t think they can handle this.”

She said, “I am so angry.”

He said, “I know.”

She said, “I had different expectations.”

He said, “I think it’s just you and I.”

She said, “You are my person.”

He said, “Thank God I have you.”

She said, “We still have so much to be thankful for…”

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