Death is not failure

I was listening to a podcast this morning. That’s my new thing. I’ve been doing that a lot lately because I can’t fall asleep most nights. That’s usually because I can’t stop thinking about problems that are complex at best and solutions that are evading my consciousness. Thinking about things that are difficult, things that you struggle with, things that make you worry, things that make you feel powerless because they are the things for which it is your responsibility to know how to solve and you don’t, know how to solve them - well that right there is my insomnia! First I turned to a device - take your mind off that problem by playing candy crush - yeah no, it doesn’t work and it’s not good for you. Then I found audio books, um I made it through hours and hours of audio books, often “listening to” several books in a week. There’s a pretty cool function that allows you to set a sleep timer too. When I ran out of books I returned to Podcasts. I have a ton of favorites, mostly true crime but this one is different.

So I found this new podcast, it’s a great little podcast. it’s called “terrible, thanks for asking”. I relate to this podcaster in a lot of ways. She lost a loved one to cancer, an awful form of cancer. 

Hmmm. Ok, rather than delete that sentence, let’s just acknowledge how stupid it is. Why do we humans do that, is there really a good cancer? No! Cancer is terrible, it’s always terrible. It doesn’t discriminate and it’s terrible. 

Back to the podcast...

Since I’m all caught up on Undisclosed, Accused, In The Dark, Someone Knows Something, Serial, S-Town, Dear John and on and on...I checked this out (credit to Crime Writers On, whose recommendation led me to it) - it’s not True Crime and it’s not following the work of innocence projects or cold cases which I am apparently addicted to...but it is so good and bravely honest. I started from the beginning - it was and is inspiring and sad (I cried at some point in at least 2/3 of the first ten episodes yet I laughed just as much). It’s real, right? In an oddly good and affirming way, yes it’s real. And my messy life? Well, It’s like I have been saying since mom passed, to quote my new favorite podcaster “there’s no such thing as closure and acceptance is slippery” and I am here right in the middle of all the grief that will never lessen.

And the podcaster, Nora...

She lost the person that she most adored on this earth to cancer and though that is only part of her personal story it’s one that resonates with me and drew me in. In this particular episode that has me writing, well, actually I am talking to Siri because, yes, you guessed it, I’m actually driving, (hands free). Who has time for ones own thoughts? In this episode she’s interviewing the husband of another cancer patient, someone who also lost their life to this terrible disease. And he says “death is not failure”. 

That’s when I hit pause and started talking to Siri and recording these thoughts. It got me thinking (and crying) that in my heart of hearts I know that death is not failure, right? I should know that. It’s not failure, it’s a part of life. It’s not the end, it’s part of the whole. Everyone dies. Death will be a part of everyone’s life. But we don’t talk about death that way. it’s something that is in the distance. And when it does happen, because we know it must, we hope to die in our sleep peacefully. That’s just the way that we look at.m it. it’s probably not the healthiest thing. 

I had this realization listening to this conversation about death and how we view it, that maybe I might be holding onto my own failure in relation to the death of my mother. OK not maybe. definitely. I definitely feel my own failures very deeply. It it tugs at me. This idea that in losing her to this awful disease I have somehow failed. That’s really selfish I know. But there is nothing more in the world I wanted to do and still want to do than to save my mom. To save her from the inevitable pain that she would endure everyday and the painful way in which she spent her last months, days, hours, breaths. I’m a really good Sideline quarterback, just ask my husband. I always know how it should’ve been done. Somehow my husband loves me and gives me a pass for my “rightness”. I’m definitely mostly, always right. He is a saint. 

And in the hoe it should have been for mom, I wallow. I wallow in what I could have done differently.  Hindsight offers a really dangerous perspective. It gives me just what I need to convince myself of  the things I could’ve seen, the alternative paths, if only I was looking harder at the things that to any sane person they realizes only become clear after the fact. 

I’ve been holding on to this and I probably will continue to, but I’m choosing in this moment to name it and acknowledge how truly messy grief is. 

This podcast, “Terrible, Thanks for Asking” - it’s pretty amazing. It’s centered around the honest answer to one simple question. How are you? 

Can you answer honestly, this question that we are asked or ask each other daily? You should. I want to. And, I want to be accepted in doing so. 

This podcast does answer the question with honesty. It is funny, it’s sad, it’s life, it’s raw, it’s truth and sometimes awkward, yes, and messy but also affirming. Truly. Life is complicated. And that’s okay. How we truly feel, is okay. It’s not about who has it worse but is it about lifting each other up. I can’t stop listening...and I cannot believe how many of these stories and how her feelings resonate with me personally. 

How are you?

People usually say good (that’s rarely the honest answer...and when it is, it’s definitely an incomplete answer). Lately I’ve been saying “I’m here”. Queue winning smile because now the asker is like - Um, she’s suppose to say good or great! 

But what if I just answered honestly....what if we all did. What if that was okay...truly. Okay.

I wonder. 

When you can’t sleep...podcast! Or, try to answer honestly...How are you?

Untitled - written 3/15/18

It’s been quite some time since I have written. Truth be told, I didn’t expect the Journey I was on to come to such an abrupt and final end so soon. I fantasized about my mother being one of the very few Mets patients who defy the odds for years and even a decade and that though it would be filled with pain and a great deal of struggle in the end, I imagined the moments that could be possible for mom and my blogging (and let’s face it, getting a little preachy all along the way #nomorepink) all along the way.

Well none of that happened and when all was said and done my mother had only a few short years and far fewer precious moments than she deserved. Just two years ago today I wrote about a ship lost at sea. And at this time each year in particular that storm rages relentlessly.

A Ship Lost at Sea...

A daughter who loses her mother truly becomes unmoored. It's as true today as it was the day she passed. More than a year ago today, I woke up to a call from the facility that was caring for my mother in her final days. It was time, she was transitioning out of this life. I started my day like any other, get up get dressed -- don't lose it -- and help my little boy get ready for school. After a discrete call to the school to let them know that my boy would be late so he good say goodbye to his grandmother we drove. Something in me felt that he needed the closure and though he was only just six, I stand by that decision.

She was the light of his life and that light was about to go out forever. I had been honest with him every step of the way. Her battle lasted years and I never wavered in answering every question he had and encouraging him to talk with not only myself and my husband about his feelings but with her. They were the saddest of conversations but they were filled with very special loving moments. There is no doubt that my mother knew the love of her beautiful grandson and the mark that she left in his heart.

Mom wasn't lucid and did not open her eyes that day. My boy made me stop for her favorite donut at that time, creme filled -- she would never eat it. Her donut sat in front of her, his in his mouth between sentences and repeated offerings of the heart shaped creme filled donut he brought her. It was a difficult visit. Thinking back on that day, I have a new appreciation for the strength of a mother's love. I knew that my mother was dying before my eyes but I had to hold it together for my son. My mother did that very selfless thing countless times in her life for her children. In the moment it felt impossible, I wonder how we come to have such strength. Possibly it is just nature...but probably it is instilled in us through the love and devotion of our mother.

I had yet to tell my son that this was it, this was the very last moment. I wanted him to have one last chance to whisper in his Grammy's ears, all the things in his little heart -- the things a six year old finds important to tell his Grammy about his day to come and the sports he was playing and how much he loved her. To this day, the most heartbreaking moments are the ones when I can see in his eyes that he is missing his Grammy. It is beyond my ability to make this better for him. He wants his Grammy. She is gone. I want her too.

After a gut-wrenching goodbye from my boy and a whispered promise in her ear that I would be right back, please wait for your family, they are coming -- I drove my son to school. I don't remember the drive there or back but I remember talking to my son as I always did after a visit, reminding him how special he was to his Grammy and that he may not see her again. This wasn't a new conversation, he understood it, in the way that a six year old boy who has lost his dog to doggy heaven understands it. I would wait until that evening to tell him everything, he would go to school, learn and play and be six. I would fall into a violent sea, created by a wretched storm that carries on and on.

When I returned to my mother's room, panicked that I was not there for her in her final moment, she was surrounded by family -- two daughters, a nephew, sister-in-law, grandchild and her life's love. She was still with us. We quietly traded places over and over. Each struck with unbearable grief. I remember feeling that though we were all there, I was alone and though we talked quietly with each other and we were not alone, the loneliness I felt in my soul was startling. Not long after I arrived my husband arrived. And finally my last sibling. I sat by my mother's side and held her hand in mine over her heart, counting the beats and measuring the breaths, whispering in her ear that it was time. We were all by her side, it was okay to let go and finally find peace.She did.

It was the calm before the storm. A storm that continues to rage inside my heart and soul. So often you hear people say, it gets better...in time it will be easier...you won't always feel the grief so profoundly...

In truth, the storm rages on and though you get used to it -- it still hits you like a wave thrashing against the shore.

--A Daughter Unmoored

RIP Linda Christine (Hickey) Martin

HAVERHILL:  Linda Christine (Hickey) Martin, 64, passed Tuesday, March 17,2015 in the Brigham Manor, Newburyport surrounded by her family. First diagnosed with breast cancer in the fall of 2008, the kind hearted, selfless mother and grandmother began her fight. Rarely did she show the pain and suffering that she faced as she endured radiation and chemotherapy, all for the hope of survival.She was courageous, driven by her commitment to her family and the joy of being a grandparent. Determined to defeat breast cancer, she remained optimistic and it was thought that she had won. She enjoyed nearly three years in remission before the cancer metastasized in the fall of 2012.

    

With a terminal diagnosis and only the possibility of extending her time with her family and friends, she smiled through her grief and again she fought. Though Linda was known for her selflessness and kindhearted nature, it was her smile that will never be forgotten. Again, more determined than ever, the grandmother of five beat the odds for a little more than two years. She was of the bravest kind, optimistic even in the darkest moments. Again she endured countless trips to Boston for radiation and chemotherapy treatments, scans, hospitalizations and pain. Still, she formed new friendships, adding to her special group of gals from her time at K-mart and later Kohl’s and cherished every bit of time with them. Most importantly she greeted two new grandchildren, a treasure she fought dearly for.  In the end, the inspiring mother and grandmother waited for all of her daughters and her beloved spouse to be by her side before she said her final goodbye surrounded by those that she loved most.

    

Linda was born on September 24, 1950, in Alameda, CA, daughter of the late Timothy E. and Betty Jo (Martin) Hickey.  After the early death of her parents, Linda was raised in the Acre section of Haverhill by her late beloved aunts, Catherine and Elizabeth “Sis” Hickey. She was educated in the Haverhill schools and was a graduate of Haverhill High School. Linda especially enjoyed her time with her family, camping, watching movies or soap operas, listening to Irish music and having lunch with one of her girls.

    

Linda is survived by her spouse, Philip, and her daughters; Tina and her husband, Jaime Favara, Lisa Beauregard, Kristen Beauregard, Jamie Beauregard;her grandchildren; Lucca Favara, Johnathan Hanlon, Allyssa and Jacob Rodgers, Isabelle Hovey and several nieces, nephews, cousins and dear friends.

    

Visitation will be held on Monday, March 23rd, from 4 – 7 p.m. at Linnehan-Grondin Funeral Home, 129 Kenoza Avenue, Haverhill. In Lieu of flowers, donations may be made in her memory to St. Jude’s Children’s Hospital, 501 St. Jude Place, Memphis, TN 38105. It would be an appropriate and appreciated way to celebrate her life. For more information and to send online condolences, please visit www.linnehan-grondin.com.

Bake Me A Cake -- Just As Fast As You Can!

Well - this is not at all cancer related. It is, however, evidence that life does not stop when cancer slows you or a loved one down. I have learned through this process that taking time, when it makes sense to laugh and celebrate love and life as much as possible is good for your soul....especially when it aches so deeply for a loved one that has fallen prey to this terrible disease.

My husband and I have always been close to his cousin's family, the Moores. In fact, their children (his second cousins, mine by marriage), three boys, Jaysen, Torrey and Timmy were the nephews we never had for many years. Now we are blessed with several nephews but that doesn't change the special place in our heart and our home for the Moore Boys. They are smart, honorable, hard working young men whom we are very proud of.

As fate would have it one of the Moore Boys has been struck by cupid's arrow. Torrey is engaged to a beautiful young lady from the South, where he is stationed, serving our country. This is also evidence that I am aging faster than I would like to admit but let's not focus on that!

We had the opportunity over Easter weekend to celebrate their up coming nuptials. They didn't register for much, at least nothing that seemed quite special enough for such a dear family member. The truth is they are young and gifts cards and cash go along way. That being said, we hate giving gift cards or cash. We are very sentimental you see.

So what to do? Well, I found this post on Pinterest. The concept was great - a Money Cake, but it lacked the sentiment and that special touch. Knowing that the cash would go a long way towards starting their life together we settled on finding a way to make it special.

Naturally we went to the Dollar Store...

We bought some double sided tape, styrofoam discs, poster board and a batman figure. We used one of the green discs for the first level of the cake and we used three of the white discs for the second layer of the cake. Cut your poster board so that you can line the layers of the cake with it.

Then we went to Michaels...

We purchased some clear elastic bands (the kind used in the rainbow loom bracelet making kit that is all the rage these days), a hat box, cake boards, ribbon and some silk flowers.

Then we stopped at Toys R Us

There we found Smurfette.

Finally we went to the bank.

Depending on the size of your cake (ours is two layers) you'll need 200 one dollar bills or more. We chose a combination of one dollar bills and five dollar bills. This cake was made with 100 dollar bills and $150 in five dollar bills.  In the end we didn't use approximately $28 which we just through in the card to keep it a nice round number. You cannot plan your exact amount as it is quite impossible, so just guess and go with it.

The first thing and the longest task is rolling the money. The elastics hold the rolls tight.

If you want uniformity, roll them all the same direction. We chose to roll the ones green side out and the fives opposite for contrast. We also chose to put the ones on the bottom layer and to alternate fives and ones on the top layer.

Once your money is rolled you are ready to start assembling your cake. Get out the hot glue gun. First glue the poster board to each layer (top and sides), then glue the bottom layer to the cake board and the top layer to the bottom layer.

Next, use the double sided tape (must be the dollar store kind - just sticky enough to do the trick, but not sticky enough to ruin the money) to adhere the rolls of money to the sides. The tape goes on the outside, as though you are tying a ribbon around the money but instead you affix the tape to the poster board and slip a roll under it and continue all the way around.

Next you use the tape as your guide and put ribbon around each layer, using your glue gun at the start and the finish to keep it in place. We choose to layer black ribbon on top of white ribbon. The first layer relies on the tape except at the ends. The second layer is glued every two inches or so, all the way around (See pictures below).

Next we centered our lovely bride and groom on the top layer and hot glued them in place and began to decorate the cake with silk flowers (hot glued in place) and money origami (do not glue).

The Hat Box made for a truly elegant look and is practical for future use. The cake fits perfectly inside and no wrapping is required. This was a really fun project and seeing the smiles and appreciation from the happy couple was a welcome respite from the constant worry that fills my mind these days.

Family is everything.

Injustice

I feel the urge to write, yet I am struggling to find the words to convey my thoughts and emotions. Today was the hardest of days. Worse than the day when I learned that my mother had cancer, worse than the day we learned the cancer was back and far worse than the day we learned that it would someday take her life. Though I know there are darker days ahead.

Somewhere along the line I accepted that as fate would have it cancer would take my mother from this world. Until today I was able to compartmentalize that loss into the back of my mind as some distant event that would happen someday, not today or tomorrow, not even soon. My mother is a fighter, not for herself, but for everyone else. Her will to put others first has been her weapon of choice against this horrific disease and when she ran out of ammunition then I would fight for her.

Somehow though this disease takes hold of every part of you - even the insanity that is putting yourself last over all others. My mother has made that choice every day of her life, the choice that puts her second to all the ones that she loves and there are many of us. She has spent her life sacrificing little pieces of herself so that her loved ones would be whole.

The injustice of how her life will end is unbearable and knowing in advance how it ends far worse. I feel like a volcano on the verge of erupting. My emotions bubbling to the surface and trickling out like molten lava, at times bursting into the air and erasing bits and pieces of the landscape that once represented my hope for a miracle, all the while threatening to explode with devastating destruction.

I wanted so badly for my mother to be one of the few, very lucky metastatic breast cancer patients that regains some semblance of a life and lives many more years than they'd ever hoped were possible. I secretly hoped that she would live to see my son, now five, get his license, go to prom and maybe even attend his high school graduation.

My mother is frail. She is a shell of the woman that she once was, she is weak and worse she feels like a burden and she is terrified (her eyes betray her). Her disease or the treatment, which she is no longer strong enough to tolerate, or both have taken so much from her. Now we must shift our focus to the time that we have left and making the best of it together.

And so I worry that my son will be robbed of the love and the light that she would bring to his life. That she won't make it to see her newest grandchildren talk or walk. That somehow I must find a way to help my son understand and accept that which no child should ever face.

Watching my mother suffer as she does, unable to lessen her pain is a living hell. To imagine a world without my mother is unbearable. Her loss will ruin me...without her I will never be whole.

The Long Angry Road

Very early this year mom was accepted into a clinical trial after ending 2013 deflated, having spent the greater part of a year taking Oral Chemotherapy that was no longer keeping the cancer at bay. The bone mets in the base of her skull were permiating her brain. It was a very scarey time.

Mom endured radiation therapy to her brain late last year, that is believed to have done it's job, all but eliminated the cancer that was permiating the brain. She then had a break from all treatment for several weeks before her clinical trial began. This afforded her some semblance of a holiday season as what was left of her hair fell out for the second time in her life. She weathered the loss like it was the most  normal thing in the world, but the hurt and fading confidence could be seen in her eyes. In those fleeting moments when she might have wondered if people were looking at her head as she self consciously brushed her hand accross her scalp and tucked the few remaining locks behind her ear. I wonder why she doesn't see her courage, the lioness I see in her.

It's very clearly there, it glows in the light of her Sea Glass eyes and in her smile. Every once in a while it shines like a beacon in the the night. If one looks closely, they get a glimpse into her soul. She has faith, somehow she believes that there is a plan for her. It was then, a very hopeful NEW year. Mom was accepted into a clinical trial and that was promising.

But, you see, I don't have that faith, faith is my struggle. I lost it sometime ago and though I long for its return, the comfort it brings and the letting go, it is lost to me still. It's weeks like this past one where I could benefit most from something bigger than me. Bigger than the grief and the loss I feel every time we hear the words: The cancer is back...It's End Stage...This treatment is no longer working...The clinical trial is no longer a fit. Instead, I am an actress in a gut wrenching walk through life as the daughter who smiles and says all the right things whenever one gets the courage up to as me how my  mother is.

Honestly though, sometimes I really want to say - Gee I don't know, she's dying, literally dying of something that causes her terrible pain each and every day, something we treat with poison to prolong  her life and her time with us - Poison! She barely eats and hardly moves. She is alone, alone! Alone nearly every single day for hours. Except of course those days in which we sit in traffic for nearly two hours, followed by at least two hours of waiting in Boston and then another two to four hours of treatment - "Poison" and another one to two hours home. Did I mention that is at least once a week now, unless of course you count the weeks with scans - like this past week, because then it's two and sometimes three days of visits. But, no, no, no - I smile. It's all I can do and the truth is that I wouldn't wish the full weight of this on anyone.

Here though, I don't have to smile and I feel that in some ways I can let go of the disciplined control that I must have to continue on this path. Today I am angry. Today I have allowed the tears to flow and I have reminded my mother that no matter how hard it gets, I will be by her side. IF it is too much I want her to know that she can stop and I will still walk by her side, steady her and love her. Today I am beginning to accept that it is likely beginning all over again because on Thursday we were told that the clinical trial is no longer a good fit, the disease is progressing again. Slowly, but growth is growth and that means it is time to chart a new course. After today, I will find the courage to smile and to look forward to the possibility that the next treatment may be the right one, the one that not only prolongs my mother's life but affords her the joy of playing with her grandchildren without pain, that allows her to enjoy good food again and returns to her a little piece of the independence that has been taken from her.

I miss the fire in her eyes.

I miss my  mom.