September 3, 2013

So this post has been weighing heavily on my mind for awhile now. The day my mom died. It's only taken me over a year to get to the point where I think I can begin to tell the story. I'm going to be honest here, I'm not sure how much I can get through. But I am going to try.

I can't bring myself to read the posts that led up to her death day, but I am pretty sure that everyone knows Labor Day weekend, my sisters, dad and I were caring for mom around the clock. My dad "had" to go to work on Tuesday, the day after Labor Day, so I told him that I would come to the house at 6:30 in the morning to relieve him. That day I was planning on going to Dr. Greenfield's to have my FMLA paperwork signed so that I could care for mom. And please remember, I was 37 weeks pregnant with my third child. It was a chaotic time.

I got to mom's as planned at 6:30 in the morning. I remember that I was wearing black gauchos, a black long-sleeved shirt and my sandals. Dad greeted me at the door saying that it had been a hard night and that he didn't want to, but had to go to work to put in some hours. When I walked into the family room where the hospital bed was....I found my mom in a disgusting state. She looked like an animal the way he treated her.

She was laying in the hospital bed, skin and bones, with her nightgown CUT OFF at her belly button and no underwear on. My dad explained that she had peed on herself last night and that he couldn't get her up, so he just cut off her nightgown and took her underwear off and tried to change the sheets. I was looking at my mom, all of about 90 pounds at that point, naked and vulnerable and out of it. She would have been MORTIFIED.

I quickly put a sheet over her so that she wasn't as exposed. It was truly disgusting.....she may not have been with it, but she deserved dignity.

I should note, I didn't go over to mom's that day thinking that that was going to be her last day with us. I knew she didn't have long, but I never thought she was going to die that day.

So, my dad started telling me that Kasey was coming over as well, because when mom would want to get up to go to the bathroom, I wasn't going to be able to handle her by herself. At this point she was using one of those toilets on wheels. We would have to hook our hands under her arms to lift and move her to where she needed to be. He was afraid that with me being so prego that I wouldn't be able to do it by myself. I would soon learn that he was right.

So, he left and I sat down and started watching trash TV. I held her hand, caressed her skin and just sat.

Kasey came soon after, maybe around 8:00? At that point, mom started to fuss. After a little bit of a scramble, we figured out that mom had to go to the bathroom. So I hooked my hands under both of her arms and lifted. She was a little heavy, surprisingly. As I turned to take her the two steps to the toilet, she started peeing. My poor mom who was only half dressed, no underwear on, with her oldest daughter holding the front of her and her baby holding her on the side, started peeing.

I remember the pee falling on their hardwood floor and splashing up my leg. I remember putting my head down and just.....painfully....taking the moment in. She didn't know what she was doing, she just knew that she couldn't pee laying down. I believe that both Kasey and I put our heads down when we realized what was happening.

I struggle as I write this because my mom would have been mortified. But she was so sick from the cancer that she was literally out of her mind. When mom was done I was covered in her urine and the floor had a big puddle. BUT, she felt better and that was all I cared about. Fuck if I care that I have some pee on me. It was traumatic, because at that point I think I knew there was no going back. Mom was so out of it that there was absolutely, positively, no going back.

I think I have to stop now because I am honestly feeling sick. Sick because the fucking breast cancer made my mom's last day traumatic. Sick because I've finally put it out there. Sick because I've acknowledged how my dad left her that morning. Sick because she's dead. And sick because I miss her.

I guess I'll try another day to tell more. I can't do it now.

Jumping...Dancing....Doing Highkicks!!

This is exactly what I am doing right now. I AM SO EXCITED!!!!!!!!!!!!!!!!!

You are currently reading the words from the Cleveland METAvivor liason for their Sea to Sea campaign that is kicking off next year. EEEEEEEEEKKKKKKKK!!

METAvivor is the only non-profit in America that is focused solely on metastatic breast cancer RESEARCH. They collect funds, and then distribute to doctors and researchers who are looking for a cure. The Sea to Sea campaign is going to visit some of the research centers that they have funded.....which means The Cleveland Clinic is getting a visit!

I spoke to Christine today and she asked me what my ultimate volunteer role would be. I told her that I would LLLOOOVVEEE to stand in front of a room, share my mom's story, my story as a caregiver and educate an audience on MBC. It looks like I am going to get my dream!

More details to come, I just had to share. This is AWESOME!!

54

On May 22, 1960 Kimberly Hope Perkins was born. She was a bouncing baby and the apple of her mom's eye. She would grow to be a kind, loving, giving, complex, stubborn, beautiful, flawed, silly woman. She would raise three daughters to have many of her own characteristics, both good and bad. She would die with her family surrounding her until the very end. She would be 54 tomorrow.

Honestly, her birthday crept up on me. I have been so busy with my new job, getting acclimated to a new city and my own kids, that I haven't really thought about it much. Mother's Day was also a major distraction from her birthday. Excuse my french, but mother's day fucking sucked. Major big time. Now, the night before mother's day was AWESOME.

My sister Katie graduated with a 4.0 from nursing school! My whole family and I went out to celebrate her major accomplishment. It was the first time in more than three years that my family had a real celebration. A true celebration. We are all so proud of Katie and so happy that she is done.....it truly filled my heart up celebrating with her and my family.

Me, Katie and Kasey

But alas, the fun couldn't continue. I woke up super sad at 3:00 a.m. in my mom's house. See, it was the first time that I had stayed at mom's since my step-dad was in Belgium and I had to take care of her. That time was awful....this time was better, but still a kick to the gut to wake up on Mother's Day in your dead mom's house. I know that sounds awful, but that's how it was.

I was in a funk. Shitty things happened on MD and I hate it. I fucking hate it. But I can't change it. Whatever. Gah, I want that whole day to just go away forever.

Anyways, mom is gone and tomorrow is her birthday. I feel robotic. I need to own those feelings, yet I feel that I should FEEL more. But that's hard when you are on a super high dose of Zoloft. I hate this drugged up state that I am in, but I can't change it. Not right now. I just have to be.

Happy heavenly birthday, mom. I love you and miss you....

I added a flower from my sister's graduation hair to mom's grave on MD. I thought it was fitting.

Because of Her

THIS! THIS is how I am going to spend my mother's day. Reading about my fellow motherless daughters' moms. I am waiting for approval on my submission, but this is truly beautiful.

Because of Her

Read, share, enjoy. It feels weird to say "enjoy," but I did it anyways.

8 Months

Today marks eight months since I've seen, talked to, or held my mom's hand. Or harassed her. Or tricked her like I was always doing. Or rolled my eyes at her when she goes on and on and on and on about something. 8 months.

At this time eight months ago, I was on my way to my mom's oncologist to have him fill out FMLA paperwork so that I didn't have to go back to work. I knew we were nearing the end, but I had no idea that mom would pass away in less than two hours.

We had already done her last rites about two hours previously. At that point, I thought we were just doing them to get them out of the way. Merely four hours after we did them, she passed away. How was I so naive to think that I could do an errand while my mom was literally on her death bed. Isn't it weird what we do in our darkest hour?

As I type this, I am watching my bouncing ball of 7.5 month old joy, Elise Kimberly. She'll never know her namesake. That bothers me. But there is nothing in the world I can do about it.

8 months. I cannot believe that it is soon to be a year. Blah. I am to young for this. And she was too.

The gift of life

I am very excited to announce that I have landed a job with Lifeline of Ohio as their new media and public relations coordinator! I could not be more thrilled with becoming part of their team. I received the phone call the day after my other job officially ended.....it was quite serendipitous.

Lifeline is an organization that promotes the gift of life through organ, eye and tissue donation. I was amazed when I learned how many lives could be saved or enhanced through donation.

My personal journey with this topic is through my dad. When I got the call last January that he had passed away, my world was cracked into pieces. I called my best friend, my dad's friends, my family...I was on the phone for hours. Crying in anguish. At about 11 pm, I turned my phone off. When I awoke around 4:30 am, I turned my phone on again to find that I had two voicemails.

One of the voicemails was from the hospital and the other was from an organ donation center in TN wanting to know if I would give consent to have my dad's eyes harvested. By the time I called them around 5:00, the eyes had already "expired." Honestly, I felt conflicted. I never knew I would have to answer that question on behalf of my dad. And then I was thinking about his lovely blue eyes in someone else. It was a gut-wrencher. But I knew that my dad would want to help someone...he would have done it in a heart beat. I would have given consent, of course....I just missed the deadline. Part of me still feels sad about that. My dad could have lived on.

Dad and Sadie - this was his favorite picture...and mine too.

During the interview process, I was asked this question:

Jessica, we deal with life and death. Are you comfortable with the topic of death?

How unfortunate is it that I am "comfortable" with that topic? In my phone interview, I told them about my dad's story. In the in-person interview, I had to watch as three people took in the news that I had lost both my mother and father in the span of nine months. I felt bad for having to inflict that upon them. . 

During the interview, I also talked to them about empathy and sympathy. I feel like I know how to talk with someone who has lost a loved one. I've had it all in the past year. People you want to slap because they tell you how you have it "better off" than they do, those who think they can explain it away, and those who just sit with you. This video is perfect in my mind. I often share it with people who ask me how they should be comforting a friend in their time of need.

The Power of Empathy

For now, I am going to tuck into bed and think of my great new job. I am really looking forward to next week and beginning a new journey in my new hometown.

I miss my mom.

Simple as that. I miss her. 

This past week we moved our family of five three hours from mine and my husband's hometown. After the hellacious year of 2013, my husband and I decided we needed....no required, a new start in a new town. With losing my job, a move became much "easier."

Moving a family of five is not for the faint of heart, that is for sure. It's been a little over a week and I think we are all finally settling down a little. The house is packed with boxes, but we are doing okay.

Now, mentally for me, things have been a little different. It is a mind cruncher to leave your "home" of 35 years, your mom's grave, your siblings and to move without a job (although I should be getting an offer later this week from an excellent non-profit down here...more on that later). My dreams have been disturbing. I think of my mom and dad constantly and ask them for strength. I feel kind of unglued, but then very glued together all at the same time. 

The dream that was the most disturbing was one where my mom looked whole and healthy, but was crying about how she didn't want to leave us. She didn't want to leave us. But she had to because of fucking breast cancer. She was so sad that she wasn't with us. It was just a super heavy dream. My mom wasn't really a sad person, so this dream was very upsetting. It was almost as if she was saying that she had a choice and she chose the wrong path. Now, we all know that she wasn't in charge and that she would never choose breast cancer, but that is how I felt after waking up. It was awful.

So, in talking to my husband, he said that the dream couldn't have been real, that this couldn't have been a visit from mom because she is HAPPY in heaven. That everyone is HAPPY in heaven and there is no sadness. Another mind cruncher. And then I was chatting with my gal pal and she sent me this:

He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.

I am trying to listen to these two bright people, it's just the image of my sad, sad mom that I can't escape. I am trying though. I just miss her so much. But, it's a pain I have to get used to. As much as I fucking hate it.

Pictograph Facts

I stumbled across this handy-dandy document this morning. For those of you who have been asking me questions about why I am raging against the machine (Susan G. Komen), here are some of the reasons:

"Mammography screening does not prevent or cure breast cancer..."
"Overdiagnosis of breast cancer has led to ..."
"...incidence of metastatic disease has changed 0%.."

Please take a second to educate yourself....like the title says, it may surprise you.

BC Facts

The Motherless Daughters Club

Isn't that just the saddest title? The Motherless Daughters Club? The name brings me a titch of pain, to be quite honest with you. But....it is an accurate, literal descriptor of me.

In hopping on Twitter and trying to become an MBC advocate, I have begun to follow many brilliant minds, one of whom is Marie Ennis-O'Connor from Journeying Beyond Breast Cancer. In corresponding with her, she sent me the link to this article, written by Nancy Hicks:
 
The Motherless Daughters Club

And my breath was taken away.

"There is a huge hole in my life where a mother — and now a maternal grandmother for my children — should be. I still wish I had a mother to call when something good happens, when something bad happens, or when nothing at all has happened, just to talk about the day."

I soaked in every word. Someone was speaking my language. I felt a connection across the internet, across continents. There are people like me. While I choose to believe my mom is with me (I swear, the other day I had the strangest feeling that she was riding in the car with me), I know I am, physically, a motherless daughter. 

Yesterday was my 35th birthday, the first without my mom and the second without my dad. Last year, my father had just passed away in January, I was pregnant and my 34th birthday was spent in an emotional haze. It was an awful day. Yesterday, my husband gave me some perspective in a funny story about my mom that he told me at 6:00 in the morning. He shifted my perspective from mourning to smiling. It was a decent day. I felt mom with me. I coped. And I am back at it again today.

"When asked how much of her life her mom’s death affected, Edelman says all of it. Everything. It affects everything. When a mother dies, a daughter grieves, and then her life moves on. She will feel happiness again. But the missing her, the wanting her, the wishing she were still here — that part never ends."

Some education...

"I knew that breast cancer had stages and that Stage 4 wasn’t good. I didn’t realize that no one dies from early stage breast cancer–but that 20 to 30 percent of those with early stage breast cancer will go on to have a metastatic recurrence."

As I am delving deeper and deeper into my advocacy for metastatic breast cancer, I came across this blog post today and HAD to share. Metastatic breast cancer makes me MAD...really MAD. But some people don't know why I am so pissed about it. I thought this post was eye-opening and just the thing that someone with no knowledge of MBC could learn from. Please take a few minutes to check out this article:

What have we learned about Metastatic Breast Cancer, Charlie Brown?

Eulogy

In publishing my last post, I saw that my mom's eulogy was sitting in my drafts. I was honored to deliver this eulogy for her. Words are not adequate to express my love. I know she heard this....and I hope that she knows that every single word is true. I had a good mom.

9.6.13

Thank you all for coming today to mourn and celebrate our mom. She was a hell of a woman and put up the fight of her life. She is so deeply missed, it's hard to even fathom going through this lifetime without her.

This past weekend, families and friends were out and about for Labor Day. The last hurrah of the summer. My family and I were having labor day as well.....actually, it was a labor of love weekend. My sisters, dad and I were at mom's side all weekend, caring for her, sitting with her, loving her. Not knowing that she would finally be at rest so soon. I know we'd do it all over again, a thousand times, to see her healthy and whole. I know that mom knew we were there, each doing our very best for her.

Like I've said, ma was an amazing woman. I'd like to take a couple moments to share some thoughts on her. 


All three of us girls meant the world to mom. We had a REALLY good mom. We've each learned from her, inherited her traits and have made her proud.

I inherited my gift of gab from mom. Dad always said that mom would tell anyone her life story and that was true. You know, it's just like she and I like to share things with other people that they may find interesting. They NEED to know these things!

Mom and I also shared a strong bond through our love for her mom, my grandma Faye. For 23 years since she has passed, every February 18 mom and I talk on grandma's birthday and every February 22 we call each other to mourn the anniversary of her passing.  This coming Febuaury is going to be very hard.

Katie, as mom was, was a younger mom. There were many challenges that my mom faced having me so young and Katie had some of those as well. But the amazing thing that happened was that Katie fell right into mom's footsteps and made a wonderful life for herself, her daughters, Aubree and Kelsey, and her husband Dan. Mom couldn't have been more proud of Katie for going to nursing school and kicking butt as much as she has. Mom will certainly be beaming from Heaven in May as Katie graduates with her well-earned nursing degree.

Kasey, the baby, has always been mom's soft spot. I remember thinking that when Kasey went to college, mom was going to go with her. Watching one of Kasey's dance recitals with mom and dad one year, it was actually beautiful to see mom gaze at Kasey as she flowed across the stage. Mom was entranced by Kasey and loved her with all of her heart.

She loved each of us girls intensely. We were her life. She was proud of us and would tell anyone she met. But her true joy were her grandchildren. Aubree, Kelsey, Sadie and Colin. She was an awesome grandma. It was rare that she would come over without some kind of gift from a garage sale in her hand for one of the kids. She loved their laughter, their smiles, their chubby cheeks. During my mom's last hour with us, I made her the promise that we would raise all of our babies to know her, just as we all knew and loved grandma Perkins. Our children will know their meemaw, their grandma Kim. My sisters and I will make sure of it.

The last piece of my mom's heart belonged to my dad. Her companion and husband of more than 30 years. Their love was a strong one. One that had its ups and downs, but always prevailed. They would go leafing, out to Eddie's Grill, sit on the back deck or just have their chats in the morning. They were a simple couple who had an amazing love. I know that mom is watching over her man as he begins his journey without her. Us girls will be with him along the way.

We love you mom. I know you are with grandma right now, happy and healthy and whole. Sadie told me the other night that I would be with you again one day when I am an angel like you. I anticipate seeing your beautiful face again, but until then, I will help to love our family as strongly and deeply as you did. I love you.

Fruit

As I touched on earlier, words that will stick with me for eternity are:

"The fruits of Kim's struggle may take years to realize."

These words were spoken at her service by Father Mark. The words come to mind almost daily. What fruit will come from my mom's struggle? Will breast cancer end because of HER struggle? Nope. Will people stop pinking because of HER struggle? No chance. Will her struggle make someone think again about breast cancer?I will try my best to make damn sure of that.

What I mean about think again is to not just see a color. To not just see a smiling face. To not just see a survivor. To think again means to take the reactions and emotions that my sisters and I have exhibited and to think about WHAT breast cancer is. What it actually is. It's NOT a color, it's not only survivors. It's not only hope. It's despair. It's disgusting. It's disfiguring. 

Maybe some of my mom's fruits will be that people think again. Breast cancer isn't the "easy" cancer, although it's marketed like it. My mom's death has challenged me to help spread the word on metastatic breast cancer. I vow to never let anyone think breast cancer is easy. I used to think it was. Until I met MBC. Then my world was flipped upside down.

Kohl's/Komen Debate

I eluded to it in the last post, but this blogger did a great job of summarizing the debacle that is currently happening. Please take three minutes to read this post:

 Drowning in Pink

Father Mark said, "The fruits of Kim's struggles may take years to realize." I've taken that to heart. My mom didn't suffer for nothing. She has made me an advocate. And advocate I will.

Hard to see

Mom's friend Jenny

This picture was posted to my sister's FB page yesterday. Mom's friend Jenny, who has stage 3 breast cancer, walked in mom's memory for the Southwest Florida Komen Foundation. Jenny said there were 5,000 people in attendance. Here are my thoughts....my instant, gut reaction thoughts:

1. It has "in memory of" on that piece of paper. That is a hard pill to swallow. I know my mom is gone, but now people are walking in memory of her. It feels yucky and weird. The sentiment is fabulous, I just hate that it's done for MY mom.

2. The money collected from those 5,000 attendees could have been used for greater awareness had they been directed to The Gathering Place or to the Metastatic Breast Cancer Network or METAvivor. These are places that care for the patient and family and also deal directly with the breast cancer that KILLS. The ONLY breast cancer that kills; stage four - METASTATIC.

I have lots of anger right now with the whole Komen/Kohls debacle. But that is for another day. Today I am trying to wrap my mind around "in memory of."

Love you, mom.

Six months later

And I still haven't had the mental space to write about my mom's death. I think of her (and it) every day. The silliest things will trigger my thoughts of her dying breath. Yesterday, it was someone actually saying the words "taking a dying breath." They were goofing about something on the radio and I thought to myself, do they have any idea how horrific it is to see someone's dying breath?? I watched my mother die. I literally watched her die. As I write this, I just want to write it over and over and over again so that people understand. I watched my mom die. The woman who brought me into this world.

Why do I want to repeat it? Because my mom didn't just die, I WATCHED it happen. I wish I could explain all of my thoughts....but I can't. I've heard that it takes awhile after someone in Hospice care passes to remember them any other way than as sick as they were. I guess I have flashbacks of mom, but truly my main thoughts are typically around her last day.

My sister had her 28th birthday two days ago. Her first without mom. She seemed to handle it well, although I know she was a mess. I know that last year I was a mess on my birthday because of my dad's passing. I just can't wait until March 25th when I have a birthday and both of my parents are gone (insert sarcasm HERE).

I've had so many life changes going on, I can barely stay focused on a task for more than 10 minutes. Let's recap:

Found out I was pregnant with third child 1.16.13
Dad passed away 1.21.13
Mom passes away 9.3.13
I gave birth to Elise 9.16.13
I lost my job 10.15.13

Yeah....that pretty much sucked.

I have been so busy with caring for three children (no small feat, I am amazed at how difficult it has been), working full time, searching for a job and house in Columbus, trying to sell/rent our house, trying to be a good wife, that some things have slipped. Relationships have slipped. And that's okay. I can only do what I need to do right now and I have to be okay with that. And I am. Friends and family that haven't heard from me in awhile are okay with that, and I am grateful. In spite of all of my losses I am grateful for my support system.

So, the death story will wait for another day. I want to write it down so that I don't forget it....but really, how could I?