When You Wish Upon a Star – My Magical Month of May!

May was a BUSY month! So many amazing milestones were reached I’m still not sure if they all happened. Every day I look at all the pictures taken over the last month & I thank the universe for allowing me to be a small part of it all.

It all began with double graduations from the University of Rochester for my son & his fiancee. We weren’t sure what would happen thanks to Covid-19 until a few months prior. It wasn’t exactly ideal but what matters was I saw them both in their caps & gowns, heard their names called & what every parent dreams of; watching them both walk the stage to receive their degrees. Well, degree covers. There were five ceremonies in all spread out over three days. The big commencement & two-degree major ceremonies for each of them. All streamed live for parents and loved ones to see.

The Graduates

Immediately after the pomp and circumstances, we switched into wedding mode. They chose to get married in my daughter-in-law’s home state of Oregon. I don’t know how they planned the wedding while attending their last year of college AND working. All the while not even sure it would all happen due to all the restrictions and rules for the pandemic. If it weren’t for her parents, it would have been a nightmare for both of them. When it comes to inlaws, Adam won the lottery.

Rehearsal Dinner

They had a beautiful day weather-wise. Their ceremony and reception took place outside. Making for an ideal setting. Clear blue skies and warm temperatures all day. Actually, it was damn hot.

If it had been a contest of who cried more, Adam won. Hands down. It filled my heart to see all the emotions he was experiencing. There was no doubt just how much in love he is. The bride was stunning. She glowed with happiness as her father walked her down the aisle.

After the ceremony, there was a lovely dinner, toasts to the bride and groom, something called The Shoe Game that involved all the wedding guests and llamas. Yes, llamas.

Llamas Anyone?

When I returned home, I was given the all-important task of babysitting their five cats and dog. That week I was literally a cat herder. No easy task I might add.

The newlywed’s honeymooned at Disney World in Orlando, Florida. They had a fun and relaxing time. I won’t lie, I was a lil bit jealous.

Epcot

When I began this blog, my biggest goal was to see Adam graduate from high school. If someone had told me I’d be there for that and so much more milestones in his life I would have laughed and laughed. I never let myself hope for anything beyond the one goal I would set for myself. I was too afraid of hoping for things I’d never be part of. Cancer forces one to not look too far into the future no matter how optimistic. I don’t say this to put anyone off or to be a downer. I say it because of how grateful I am. I must acknowledge how incredibly lucky and appreciative I am.

Which brings me to share, with gratitude this last bit…

Just in case anyone doesn’t understand the photo above, these should do the trick!

I’m going to be a *gulp* GRANDMOTHER!!

Truth be told, I’ve known for a while. This has been the HARDEST secret to keep. Those that know me, understand how physically painful this was. I was SWORN to secrecy until other family members were told. Nothing is worse than finding out about important life events than on the internet. So, how long have I known, you ask?

I have a magical new goal!

The Quiet Time

Most mornings, I am the first one awake. I like that. I have a routine that I follow. I go into the kitchen, turn on the Keurig, put hazelnut creamer in my coffee mug, and while the coffee is brewing, I prepare Bella’s breakfast. The first of her several small meals throughout the day. I grab my coffee, my meds, an “after breakfast” cookie for Bella, and head for the couch. While I check my phone to see what I missed overnight, Bella & her full belly snuggles up next to me & falls asleep.

Morning puggle snuggles

This quiet time is my favorite time of the day. The only sounds that I hear are the clock’s ticking on the dining room wall, the soft whooshing of the traffic below us & Bella snoring. It’s peaceful & relaxing. My Twitter feed is full of tweets about what’s going on in the world & updates from friends sprinkled in between them.

It’s ironic how the brain triggers the memory of events that happened in the past. Songs, smells, places, reading a book, or specific dates. It happens even when we don’t mean to or even want to, depending on the memory it triggers. That happened to me this morning. Not just one memory, but two.

These memories are both exceptional, each in its own way. They are separated by fifteen years. I can recall every last detail of each memory. When I think of them, it’s as if I am back in that moment again. I hear the sounds, what was happening around me, and who was there with me. I even experience the feeling as if it’s happening for the first time. I don’t always remember them in the order in which they occurred. However, one always triggers the other. It’s like being in a time machine but without the “Back to the Future” Delorean. Does this happen to everyone?

This morning it happened backward. My memory placed me back in one of the many waiting rooms at Memorial Sloan Kettering in Manhattan. I was waiting for the nurse to call me for the first of four scans I was having. I was sitting in an armless chair; the bright sun came through the windows on my left. Above me, in the corner of the room, the TV was on. Good Morning America was on. A couple won a contest to be married, live on their show. The hook was that John Legend would also be there to serenade them with his wildly popular love song: “All of Me.” Later that afternoon, I would be in the exam room sitting next to my Oncologist and, on the other, my husband. She read the results of my PET scan. It was the first one I had after I started treatment and the first time I heard: No Evidence of Disease. I was confused. My doctor put her hand on mine, looked me dead in the eyes, and said, “The cancer is not detectable. The Aromatase Inhibitor is working. This is the best possible news.” It took a minute to sink in. I cried & laughed at the same time. That was seven years ago.

GMA 2014, Courtesy of ABC News

I will always be grateful for that memory. It’s probably the only positive, happy experience I’ve had living with cancer. I had hope again. Hope that cancer had taken from me. That feeling is what triggers my next significant memory. It was a snowy day in 1999. I had the ultrasound that every expectant parent looks forward to. I saw my son, for the first time, cramped in my belly. He looked so chill. The tech pointed out his tiny little finger buds, his spine, his legs. She was reassuring that all was well. Did I want her to tell me the sex? she asked me, YES, I wanted to know. She moved the wand back and forth over my stomach. “There it is,” she said. “You’re having a boy” The rest of the story can be read Here

As I sit here remembering these two events, I think about what’s to come this month. My son & future daughter-in-law are graduating from college. They will have commencement ceremonies this year. While the No Visitor policy is still in place, I’ll be watching the live feeds. The following week I will have fully realize a dream I never imagined I would have the honor to attend; my son’s wedding. I am so looking forward to watching his bride walk down the aisle to exchange their vows.

I adore these two

I’m still trying to wrap my brain around all of this. When did he grow up? Most parents who get to this point in their children’s lives want to turn back time to when their kids were little. I honestly don’t. I cherish this time right now as he builds his life with his soon-to-be wife. They both have accomplished a lot in the last four years. I couldn’t have imagined a better future for my little pup.

My lil pup

At the last minute, I chose to have my PET scan last Friday. I wasn’t going to do any significant medical stuff this month as I didn’t want anything to put a cloud over these monuments occasions, but in the end, I knowledge is power. I didn’t post anything about it or the “look at me; I’m having a scan” picture on social media. Many of my friends are dealing with their health that it just didn’t feel right. I realize it shouldn’t stop me from talking about what’s happening with my own health. It’s separate, but I guess I’m becoming more empathetic now that I’m in my 50’s. Is this what happened to the Grinch?

May 2021 will be the most fantastic month. I am going to take in every second & enjoy it to the fullest. I feel so, so fortunate, and I thank the universe for keeping me No Evidence of Disease for now.

What the Fuck Is the Reason?

I am so sick of hearing people say to me that I’m still here for “a reason” or I’ve outlived my prognosis for “a reason.” If there is in fact “a reason,” then please tell me, what the fuck it is.

This week has been especially difficult. A close friend of mine who I see on a regular basis and talk to daily, took a turn she unfortunately wouldn’t recover from. Her Mom called me this past Monday to let me know Melissa was going into hospice. I don’t care how prepared you think you are; you are never prepared to hear those words about someone you love. As I hung up the phone, it felt like someone pulled the world out from under me. I don’t remember a time when I ever sobbed like I did on Monday. I wasn’t crying for me. I was crying for Stella; Melissa’s 6 yr old pint-sized-version-of-herself, daughter. What kind of sick joke was the universe playing?

Melissa & Stella

I went to see Melissa Tuesday evening. In true Melissa fashion, her room was packed with family and friends. To know her, that was it, you had no other choice BUT to love her. Her no nonsense, tell it like it is attitude combined with a je ne sais quois and dimples gave her an unmatched power that would evoke a response of “Thank you, Hope to see you again.” after telling someone to fuck off.

My visit turned into an all nighter. I stayed with her Aunt’s Marie and Kathy. Of the three of us, Marie slept. Kathy and I talked all night and kept an eye on Melissa. Even the night nurse Vicky spent a good chunk of the night chatting with us.

Tuesday was the last time I would hear Melissa speak any words. By Wednesday night she stopped taking any liquids.

I returned to the hospital Thursday night. I was certain that the next time I walked out of the hospital to go home, Melissa would be leaving as well. Headed where she would be reunited with loved ones from her past and friends who had arrived ahead of her who were waiting patiently for her. Kathy and I again talked all night long while Maria slept on and off. By morning, the general consensus was she was waiting to see Stella one more time. No one could ever tell Melissa what to do and she wasn’t about to let anyone pull that crap now.

While all of this was going on, I was going through periods of anger rage. White hot rage. Serious question: Why Melissa? Why not me? Before anyone freaks out, I’m thinking this because I reached my “please God just let me live long enough to see..” goal. IF something were to happen to me, I know my son would be OK. Melissa, on the other hand, is 36 yrs old. She has milestones to reach with her daughter: Kindergarten graduation, first lost tooth, first sleep over, first crush, first boyfriend…Stella needs her Mom for this – all of this. There is no good damn reason to explain this unfair bullshit.

Then I encounter stupid people on social media (by proxy) and I may have had a rage tantrum. I read in a Facebook post that someone said they felt having cancer was a gift and that comment was offensive to the person who’s now talking about what she read. What-the-what? A cancer patient, who is actively living with cancer NOW feels it’s all a GIFT?? Now I have to give my two cents, which is more like a dollar fifty in pennies.

I said my last goodbye to my all-hours-of-the day-or-night-chat-buddy, my Indian food loving, CheesecakeCake binge eating, classic moving addicted, fabulous friend at 9:48am, March 1st, 2019.

Yesterday was a blur. I slept. A lot. I forget that I can’t keep up the pace that I think I can. My body gets exhausted and I shut down. Two all nighters in 3 days was cake in my 20’s but 20+ yrs and a cancer diagnosis later – forget it.

My phone rang at 10:49pm Sunday, March 3rd. It was Melissa’s mom. I knew before I answered. For a split second I wondered if I ignored the call, could I change the outcome? I answered and heard the words I didn’t want to hear: Melissa had passed.

Part of me feels very selfish being upset. My sadness is a little about me; but mostly for Stella. As sad as it is, Melissa is no longer in pain, she’s not struggling to make it through the day while being so exhausted all she wanted to do was sleep. She’ll never be nauseous or sick at the drop of a hat. Melissa will never have to endure another scan, treatment, or side effect.

I’m still pretty fucking angry. Death didn’t have to be what gave her that freedom. We should have better treatments. We should have medications that keep us going without the worry of impending death. There’s no good reason for children like Stella to be growing up without their parents.

So, I guess I’m just going to have to use whatever extra time I’m being given and take it up with those that failed Melissa and Stella.

Maybe, just maybe, I figured out what that “reason” is after all.

Melissa DePalmo ~ March 26, 1982 – March 3, 2019

Making A Difficult Conversation Less Scary – There’s An App For That!

This post was sponsored by Celgene Corporation.  Personal opinions and thoughts are my own.

Breast cancer is an overwhelming diagnosis to face. Now, imagine having to go through it all with a child (or children) under the age of 8-years-old. It can be a lot for their little minds to process and can leave them scared. What do you say? Will they understand? Do you tell them at all? Well now, there is a new interactive app available that is designed to help parents have these conversations with their kid(s), and can help make it less scary for them.

The Magic Tree is a brand new, free app designed by Celgene specifically to help parents with children between the ages of 5 – 8-years-old to have age-appropriate conversations about mom having breast cancer. You can find more information on how to download the app here: http://magictreebreastcancer.com. What’s nice about this particular app is that there is a helpful discussion guide for parents that goes over each topic and provides guidelines for conversation. Included in the guide are possible behavioral signs that parents might recognize in their child’s reaction to their parent’s illness, as well as some helpful suggestions on what best to do.

Aesthetically, the app is a charming cross between a video game and a chapter book, which has a friendly and fun feeling, like many interactive learning games. When you open the app, The Magic Tree sits in the middle of the screen. There are noises from nature and cars driving by on the road behind the tree. Sitting against the rolling green hills is a house, playground, library and hospital. Each contain the four videos that are the “cancer” part of the app, each dealing with a different aspect of mom or dad’s breast cancer. Each also has a game that can be played after the video or at a later time.

The Magic Tree covers four main topics within the game:

Can You Catch Cancer?

The playground icon helps children understand that cancer isn’t like a cold or the flu. They can’t get it from someone else or being around someone that has cancer. Here is it also explained that they are not alone, that other people are also diagnosed with cancer, too. The video ends with the suggestion to head over to the house icon.

Is It My Fault?

The house icon tackles this question that many children, and sadly adults, often ask. The 1:45 minute video does well with explaining that cancer isn’t anyone’s fault and no one knows why it happens. Then the video encourages the child to help around the house (but not do too much), and that even though mom may not be able to spend as much time doing things as before their love hasn’t changed one bit. The video ends with the suggestion of heading to the library next to learn more about the cancer inside mom or dad’s body.

What Is Cancer?

The library is where cancer is explained in a 2:09 minute video with age appropriate graphics. The video helps children understand how the cancer started in the cells and how cancer that grows forms a tumor. The way to stop the cancer from growing is to visit the doctor and hospital often. The video ends with that segue, suggesting the hospital is the place to go to learn exactly what the doctors may do to treat the cancer.

How Do You Treat Breast Cancer?

The hospital is one of the longer videos, where such topics as biopsies, operations, radiation, chemo (and types of chemo) are explained. The video does a good job at showing what some of these procedures look like in a non-scary way. Side effects are also explained, like nausea from chemo, hair loss and exhaustion.

At the end of each completed chapter a prize is earned that goes onto the Magic Tree.

A game is included with each chapter because who doesn’t like a game? Two games are for two players and two are single player games. The game in the chapter, Can I Catch Cancer?, is geared around avoiding hugging the people that look “sick.” The other games are “just for fun” games. In all of the games there are no winners or losers, but at the end of each first play there is a prize earned that goes onto the Magic Tree. Children don’t need to worry, when the Magic Tree is full of prizes, just go into the Menu and hit the reset button and they can start all over to earn those prizes!

I really like the glossary, with all of the words that may be difficult for children to understand. What I like most about it is that it’s also in audio format so the child can go through the glossary on their own and have each word and definition played back to them.

The team at Celgene really put thought and care into considering the needs of the parents, too. There is also a discussion guide for parents and a “selected resources” section. Inside that tab is a list of organizations that have information for how to talk to children and information on breast cancer.
What I really appreciated most about this app was that in each chapter there was a consistent message of having open dialogue between parents and children. Children are encouraged to talk to their parents about their feelings and how they feel about mom or dad having cancer. It’s important that children feel comfortable asking questions and being able to open up about how they are feeling when a parent is sick. The encouragement from this app is just as important as the explanations it gives for cancer.

The app is available for free download now on iTunes and for Android via Google Play – you can find links to download it here: http://magictreebreastcancer.com. Download it, give it a whirl and if you know someone with breast cancer that has children aged 5 -8-years-old, tell them about this app!

Valentines Day Really Is About Love

Today is Valentine’s Day. A day where romance is supposed to fill the air.

There will be flowers delivered, gifts of chocolate, and sparkly things are given. Couples going out to dinner and children having parties in their classrooms. Some people may even remember this day for years to come because of special memories.

I am one of those people, but not for any of the obvious reasons anyone would assume.

On a rainy Valentine’s Day 19 years ago, I had an ultrasound and was told that I would be having a baby boy in July. I was 4 months pregnant, and I was going to have a BOY!! I was so happy. The little peanut who was now big enough to put me in maternity clothes was my SON! Ironically, a few days prior, I felt the first movements that felt as if I swallowed half a dozen butterflies. “Mommy loves you, little guy!” I kept saying that over and over to him. I said it while they finished the ultrasound, in my appointment with my Doc and in the car.

He needed a name. Immediately.

I couldn’t keep calling him “little guy,” “little man,” “buddy.” He needed a proper name. I had picked out names for girls and a few for boys, but none of them seemed quite right anymore.

His name had to be perfect. Perfect for him. It needed to be a strong name. A name all his own. A name that couldn’t be shortened without his permission the way some names can like Christophers can be shortened to Chris or Matthews can be shortened to Matt.

And then, it hit me, his name. I knew his name. My son’s name would be Adam.

Just like that, even before I held him in my arms, I was in love.  A deep, unconditional, unbreakable, unshakable, crazy love that only a mother has for her child.

So Adam, when you read this one day, I want you to know that all those Valentine’s Day cards that I have given you over the years – they have/had a very significant meaning for me. It was the day that you became my son instead of just being ‘the baby.’ You have always been my special Valentine not only on February 14th but every single day of every single year.

 

 

 

 

“I’ll love you forever, I’ll like you for always, as long as I’m living

my baby you’ll be.”  ~ Robert Munsch

 

 

 

 

(Originally posted: February 14, 2018 – Updated: February 14, 2020)

 

Proudest Moment Number 6,535 (and counting!)

Last week was a very big week.

It was a big week for me but more importantly, it was a very big week for Adam.  Adam graduated with honors from a school he has attended since the 6th grade: Bishop Kearney.

I don’t mean to take anything away from Adam. I only mention that it was a big week for me because when I was diagnosed back in 2013 no one was sure if I would be alive to see this day. This day was the only goal I had set for myself (and I made it my medical teams goal too). Regardless of what condition I was in, I WAS going to see my son walk the stage and get his diploma. Last week, not only did I accomplish that but I’m doing OK right now. Better than I had envisioned and I’m so blessed. (That reminds me, there will be an update on the Brain MRI I had at the end of May – stay tuned for another post).

Moving on to a more uplifting topic…… OMG ADAM GRADUATED!!!

The Thursday of Graduation Week (June 8th), there was a Baccalaureate Mass at the neighboring Catholic Church. Bishop Matano was on hand to officiate the Mass. The Graduates entered church as a group and then sat with their families, giving a white carnation to their Mothers (ME!). I am proud to say that Adam had so many family members there that we not only filled the reserved pew but we took over the pew in front of us as well! In addition to Adam’s Grandparents, my Mother and Father In-law, Pat & Bill, Sister In-law, Kim and Niece Leah also came.

On Friday (June 9th), Adam had almost a full day of rehearsal for Graduation. As National Honor Society President, Adam was to deliver a speech. He was instructed to arrive before the other students so he could practice on the stage. We were like two ships passing in the night that day. I had an early morning Dr appointment so I didn’t see Adam before he left. I came home to find an envelope that looked like it was from School. When I opened the envelope and realized that it was a handwritten letter from Adam, the tears began flowing. (I made a mental note to ground him when he got home for not warning me this was coming so I could adequately prepare to read it).  This is what he wrote:

Mom,

How can you thank someone who’s given you everything you have?

The person I am today is the result of everything you’ve done and all of the sacrifices you have made to get me here. Next year, I will be attending one of the highest rated Universities in the entire country and when people tell me that my “hard work is paying off”, I do agree with them, but it’s not even close to half of the full truth.

You’ve done things for me that I would have dreamed impossible if I didn’t know better, for sending me to a private school for just about my entire life, to sending me on a week-and-a-half long vacation to Italy. Now, I am preparing to similarly do the impossible in becoming a doctor. If I’ve learned anything from you, it’s that I can do it, no matter how much I say otherwise.

In a few days I will walk across the stage in a packed auditorium for the first time. Four years later I will do it again, in a much larger room. Eight years from now, the room will be smaller, but the applause will be louder. I said that you taught me I can do anything – but the one thing I cannot do is thank you enough for setting me up for success.

With All My Love,
Adam

IMG_0016
My Special Letter

I am not even lying when I say that it took me damn near 30 minutes to get through the entire letter because of all the tears and ugly crying. (His handwriting didn’t help much either).

This heartfelt letter came from MY KID! The boy, who for the most part, is on the quiet side. The boy, who to have a conversation with, you sometimes have to pull the words out of him. Wow. It’s going to take me a bit to pick out just the right frame for that letter. It needs a very special frame indeed.

I could tell that Adam was nervous and excited Friday night. When I went to say good-night to him, he was carefully picking out his clothes and laying them next to his Graduation cap. It was the most adorable endearing thing. (He’ll kill me if I say adorable).

I hardly slept Friday night. I was so excited. I went thru the memories of Adam’s life, like it was a movie. All of the amazing milestones: his first word, his first steps, his first actual sentence (yes, I remember that specifically because of what he said: “I hung-wee” and trust me, he has yet to feel full!), losing his first tooth, learning to ride a bike, and teaching him how to drive. The trips just he and I took: Hershey Park, the Corning Museum of Glass, Darien Lake, New York City. It’s absolutely astonishing to me to think that his childhood is all but over and he will be beginning this next chapter of his life.

GRADUATION DAY!!!!

June 10th 2017

Somewhere between laying his clothes out and sunrise Adam’s excitement got lost because when I went to wake him up he was none too thrilled. He finally rallied and he even agreed to a pre-Graduation picture! (after the threat of violence).

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Me and The Graduate

The ceremony started at 11am at Roberts Wesleyan College, however the students were told to arrive at 10am. That was fine by me because I wanted to sit in a very specific spot and wanted to secure my place in line. No one was going to stop me from being down front. NO . ONE.  I was going to be in perfect view of the podium so I could capture Adam’s speech on video. I give my husband props for standing with me in line until they opened the auditorium doors. I could rattle off about a thousand other things he’d rather do (watching paint dry) in that hour than standing in a line of people he didn’t know.

As soon as those doors opened, I bee-lined it in. I made my way to the row I wanted and waited for my family to catch up. Third row, stage left (for my non-theater folk, that means the right side of the stage). In perfect position of the podium to see Adam’s speech and to see him get his diploma. I was happy.

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Roberts Wesleyan College

It was a very nice ceremony. Adam gave his speech in between the speeches of the Valedictorian and Salutatorian. He spoke about all the work and fundraising that the National Honor Society did throughout the year. It was especially moving when he mentioned The Scoops Challenge that Adam and the NHS organized to benefit The Cancer Couch Foundation. This was the first year that the school did a fundraiser specifically for Metastatic Breast Cancer. It’s a fundraiser that they will continue to do every year during the month of October.

June 2017 003
Photo by: Bill Rahn

The Commencement speech was given by Patrice Walsh who not only is an Alumni of Bishop Kearney but a very well-known and respected local news reporter. She’s also someone I consider to be a friend and that made the day even more special to me.

To my surprise, Adam received an academic award in Social Studies. It’s a pretty fancy award too! It’s not the paper certificates that he’s gotten in past years. This one is glass and could do some damage.

And then it was time for the Graduates to walk across the stage! Thank GOD his last name is near the front of the alphabet because the waiting seemed to take FOREVER!!

June 2017 005
IT’S OFFICIAL!!

And just like that it was over. My Son had Graduated High School and I saw every single second of it. I have the memories, the pictures, the video of his speech and it was better than I could have ever imagined it.

Now, I reset the clock. I set the clock for new goals and new milestones to be around for. If I did it once, I can do it again and maybe again. At least that’s what I’m going to keep telling myself. Maybe, just maybe, my body and I will listen.

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The Proudest Mom Ever & My Handsome Graduate