Dear Advocacy, It’s Not You; It’s Me

At the end of last year, I made the difficult decision to stop all active advocacy in the Metastatic Community. In February, I officially resigned as METUP’s President. I haven’t disappeared completely, I am still available for individuals that need advice or help. I feel I will be more effective that way.

I threw myself into advocacy because I felt it was the right thing to do. My intention was to try to make meaningful change for those that may come after I’m gone. I diversified my activities. If it felt right, I would say yes when asked to take part in something new. I’m not someone who craves attention or wants any recognition. I’ve always preferred to be in the background; part of the scenery if you will. That didn’t always happen. I allowed myself to be out of my comfort zone a few times in group projects and while I am thankful for those experiences, I promise you, I hated every minute of it.

I, unfortunately, allowed my mental health to suffer because of my advocacy. I didn’t want the deaths of the men and women I knew to be in vain. I felt an overwhelming responsibility to keep going while my physical health was reasonably good. Meanwhile, I felt like a fraud. Who’s going to take me seriously when I’m still here after 8 yrs? I certainly don’t look sick, hell I wouldn’t even believe I had cancer so how can expect strangers to? Add a healthy dose of survivor guilt and top it off with a global pandemic that cuts us all off from socialization. I was low. I was unhappy.

Advocacy has changed so much. There is less and less that feeling of: “how are WE going to fix this” and a whole lot more in-fighting, cattiness, and “you’re doing it wrong.” There are these pockets of small groups that want nothing to do with each other for the stupidest reasons. I can only imagine how it looks from the outside but from the inside, it feels like there is this constant unofficial fight to be the top dog of advocacy.

It all changed when Beth Caldwell died. She truly was the matriarch of the community. The sad thing is there is still so much more to be done: pharmaceutical price gouging, restructuring clinical trials, research disparity but the center of attention right now is the systematic discrediting of a fellow MBC patient. I can hear Beth’s voice asking: “Who’s life is that going to save?”

In the past, I have tried to help. I’ve taken it upon myself and tried to be a voice of reason. We are more powerful & effective when we all work together, aren’t we? The fire I once had in my belly was gone. It isn’t empowering to me anymore. I cannot be around people that have these other agendas that have nothing to do with advocacy while boasting how awesome they are. In my experience, if you have to keep repeating your perceived status, it’s not as awesome as you think and no more than what others have/are doing. Any respect you may have had is been decimated by your own words and actions.

I’ve given MBC advocacy all I had. I’m proud of all the things I have done and I don’t regret any of it. I made incredible friendships because of it. Now, it’s time for me to focus on my family and the people I love the most in this world. I am turning my attention to the future. More specifically my Granddaughter: Piper Olivia who will enter this world in January. I am not going to squander this amazing gift the universe has bestowed on our family.

Miss Minnie in charge of the gender reveal!

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!

Fifty Years of Gratitude

Today I am grateful. I’m grateful every day, really, but today I am especially thankful. The people responsible for my gratitude should be acknowledged and adequately thanked, so I dedicate this blog to all of them.

The Early Years

I am grateful for my parents and that romantic night they had (I’m taking some creative liberties here, but you get where I was going) that resulted in me.

I was fortunate to have had a privileged childhood because my father worked his ass off, and my mom ran the house and raised my brother and me. We were monsters.

I am grateful to have had a close relationship with my mother’s parents growing up. I learned an innumerable cornucopia of life lessons that could have only come from them.

I’m grateful I was raised with all of the traditions of my Italian heritage of cooking, holidays, always using my hands when speaking, and swearing.

I’m fortunate to have an older brother. No, I am.
Even though he teased me relentlessly when we were growing up, we did have some fun times, and he’s there when it matters. He and my sister-in-law have given me two nephews I am super proud of.

Nephews – The Early Years

I’m grateful to my dad for bringing a puppy home to us kids knowing full well he was the one that was going to need a dog house. While my mom was none too happy for a long time, Pepper survived four homes, two states, and getting hit by a car. 13 long years in all.

I am grateful to all of the friends I had growing up. I couldn’t tell you where most of them are or what they’re doing, but each one played a part, even a small part in shaping who I am now. I also have some cool memories. I don’t know how I didn’t get arrested with some of them.

I’m grateful for having had piano lessons as a kid. On my ninth birthday, my folks bought me a piano. Remember, I said I had a privileged childhood? I took lessons on and off through high school. I can’t play much now. Sorry, mom & dad, that was an expensive piece of furniture to display framed photos.

I was fortunate to have been afforded the opportunity of a good education. My parents chose private schools for most of our education. They weren’t uppity boarding school private schools (no offense to boarding school alum). I’m talking about Catholic school. Yes, the rumors are true, BUT that doesn’t include me. I was a nerd.

I’m grateful for my parents teaching me that life isn’t a series of handouts. If you want something, you work for it. There were chores to do, then babysitting until I was old enough to get a” real” job. A MALL JOB. Every sixteen-year-olds dream job. Mine was to work at Baskin and Robin; sadly, I ended up at Macy’s.

I didn’t know it at the time, and I sure didn’t feel it; however, I am grateful now that my family and I moved across the country when I was 17. California to NY. It was devastating then, but it had a massive impact on pulling me out of my shell and shaping the course of my life.

 

Adulting

There are no words for the gratitude I have for whatever power or force is responsible for trusting me with the outspoken and stubborn child I have. I mean that in the most loving way, only a mother could. Raising a child on your own is challenging. When that child is (at times) smarter than you (and knows it), make sure you have wine available. The moment I knew I was doing a rockstar job as a mom was when my son shouted those three little words and went stomping into his room,” I hate you!” I Love you too, kiddo.

I am grateful for all of the amazingly fantastic teachers my son had throughout the years. Most memorable to me are Mrs. Moore in PreK, Sr Pat in 3rd Grade, and Mrs. Feller, who taught him four years of Latin. I know there are so many more. I don’t mean to leave anyone out. These three are the teachers I immediately recall; however, I do mean all of you. Except one. Who shall be known as Voldemort. Don’t ask, please. I’m serious.

I am so fortunate to know some outstanding individuals who I keep within my inner circle. I met Jennifer as a senior in my” new” high school in NY. She was spunky, sarcastic, witty, and smart AF. She still is, but imagine all of those qualities the way fine wine will age to perfection, and that’s Jennifer now. One little reason why I adore her so goes back to that August in 2013. The night before my first ever PET scan, I received a call that the machine was down. I had to be rescheduled; they don’t know when. Jennifer wasn’t having any of that. She pulled all the strings she had, made calls, and went straight to the top. The top of what, I have no idea, but it worked. I was the first person in that machine the next morning. I adore Jennifer.

Duran Duran Fans 4 Life

I’m grateful for my pup, Bella. She’s a source of comfort, she’s my snuggle buddy, my secret keeper, snack taster, walking partner, and little spoon to my big spoon every night.

 

I am grateful for my extended family, my in-laws. They are supportive. They call to check on us, are always available at the drop of a hat, and generous to a fault. My step-sons are a trip. They put on a tough exterior, so you don’t see how much they care. Most recently, the youngest wouldn’t book a trip he was looking forward to taking until my scan results came back. He would only go if the news were good. It was, and he went. I LOVE my sister-in-law. She’s my comic relief; every family function is even better.

BREAKING NEWS!!

I am grateful for my FUTURE DAUGHTER IN LAW! That’s right. My son asked, and she said yes!! I am so happy for both of them. She has a generous heart, and she’s hard-working. She loves Adam and makes him happy. I can’t ask for more than that. Bring on 2021!

 

The Hard Stuff

I am grateful beyond words for my Primary Care Physician. Without her keen attention to the results of my tests; the clues she found could have otherwise been overlooked, I certainly would be dead and wouldn’t be writing this blog. While this may seem contradictory considering my current diagnosis, Dr. P saved my life in 2013.

I am grateful to have access to excellent medical care, especially at Memorial Sloan Kettering Cancer Center in NYC. My oncologist there, Dr. Modi, is the best. She listens, she’s calming, she’s honest but not scary. I love seeing her. I shouldn’t because – cancer, but I do.

It’s not always roses and rainbows even in the best of marriages. Throw in a serious illness and you’ve just upped the stress factor by about 100 levels. Anyone who says otherwise is a damn liar. Most of our marriage has been in the shadow of cancer. It’s been trying at times but my hubs has always made sure even after that final diagnosis that the best medical care was available to me. He never complained, in fact, he insisted we travel to Manhatten so I could become a patient at Sloan Kettering. He still found time for us to get away when we could (still does) and he always tried to make me laugh even when I REALLY don’t want to. His sister asks me all the time how I ‘put up with him’ but really he puts up with me most of the time. I am grateful for him every day.

I am thankful for my friends that stayed. The friends that didn’t leave or ghost me after cancer became part of the dialogue. There’s a huge adjustment that happens when you are dealing with a serious illness. An even bigger one when that illness isn’t ever going to go away. No one realizes that until it happens to them or it’s happening around you. Just like marriage or babies- there aren’t “how-to” step by step manuals. “What to Expect When You’re Expecting” does NOT count. That’s crap too. It glosses. I digress. I’m trying to say that I wasn’t the easiest person to be around that first year. Thank you for sticking it out.

36 years of Friendship

I am grateful for the radiation oncologist that treated my bone metastasis. Instead of putting me through a month’s worth of treatments, the plan was five days for each spot after careful mapping and tattoo placement.

I am tremendously grateful to the first oncologist I had locally (I’m on my third one, not by choice) that not only listened to me but also HEARD me when I kept pushing for breast surgery to remove the tumor that was still present. I was not a candidate because I’m Stage 4. Ultimately I met with an angel of a surgeon who understood my logic and worked out a compromise. I had the surgery and am very thankful to Dr. O.

I’m thankful for my Gastroenterologist. Even though every single test came back negative and had no explanation for why I felt so shitty or why I kept losing weight, he referred me to a surgeon who removed my gallbladder. While it appeared normal on all the tests, it was acutely inflamed. That was the problem all along.

I am so grateful to have met and gotten to know so many extraordinary and remarkable people from all over the country and the world. Please understand, I am not now nor will ever be thankful for cancer. I’d give that shit back in a hot minute. I consider the men and women I have met along the way being gifts for the shit hand life forced onto me. They have all changed my life for the better. Far too many to mention by name.

All of the advocacy opportunities have been unlike anything else. It makes me feel like I am doing something to make all of this not so shitty for the next person. Going to conferences, taking part in protests, lobbying, and even organizing a social media blitz – it all makes me feel productive. I am so grateful for that.

 

This is the longest blog ever. Hopefully, you’ve made it this far and not fallen asleep. I’m just about done.

I am the most grateful and overwhelmed that I am celebrating my 50th birthday tomorrow, even though it’s during this pandemic and most things are still closed. My birthday falls on a Thursday this year. I bring up the day of the week because I was born on a Thursday, and I think that my 50th falling on the same day of the week as I was born is pretty neat. I used to have a mug that had the “Mondays Child” Nursery Rhyme on it. I loved that mug. It was then I learned that I was a Thursday’s child, and I had far to go. It’s not so corny anymore.

It’s a little bit poetic when you think about it; I should be dead. I should have died in 2016 according to the statistics. That’s IF you believe statistics. I’m not special. I’m not doing anything different than anyone else has done. It’s 75% luck. The other 25% is because of the treatment plan I’m on that has been working for the last 5 yrs. I wouldn’t be taking these medications if it hadn’t been for the researchers working to find the CDK/4 Inhibitor who then ran the clinical trials that resulted in Ibrance. That 25% is saving my life right now. It shouldn’t be. It should have stopped working, but it’s still saving my life.

Remember gratitude; always be grateful.

I’m leaving this song from Sia “Saved My Life” that inspired this blog below. Sia is and always will be my music God.

 

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

My Bucket List Got a Bit Smaller

We started planning our February vacation many months ago. We knew we wanted to go to Florida but not sure where. Finally, we settled on Universal Studios and Cape Canaveral. The boys are too old for Disney and this seemed like a great alternative.

Thanks to my amazing friend Nancy Beth, she put me in touch with an organization that provides adults with a terminal illness and children 16 and younger tickets to Universal Studios! I immediately got in touch with Compassion Partners and spoke with a lovely woman who told me what to do. Later that day, I had a confirmation letter from her outlining that 10 tickets (2 days) to Universal along with a Gold Pass AND 5 tickets to Sea World were on hold for us!! Little did I know, the Gold ticket allowed all of us to get escorted to the front of every line of every ride at Universal!! No matter how long the wait was…we went to the front of the line. What a time saver and boy did it help me! The boys felt like VIP’s!

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Two weeks before our trip, I found that Sea World offers ‘Experiences’. A behind the scenes if you will. I about lost my mind when I saw they had a penguin experience! I LOVE penguins. I collect them and I even have a penguin tattoo. I booked it for my son and myself. The others didn’t care for doing it.

It was amazing!! We were able to go back to where the penguin habitat was and the tour guide brought out three penguins! Leon was first. Leon is a King penguin and the largest one. He was so sweet but all he cared about was getting out and wandering thru the offices.

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Sherlock was next. Sherlock is a Rockhopper. He was very friendly and very curious. He had fun posing for pictures. While Sherlock was posing for photo ops, Leon was walking around and hanging out by the door hoping it would open.

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The last little guy was a baby Gentu. He was losing his baby fluff to make room for his feathers. This penguin wasn’t named yet because they weren’t sure if he was male or female. I didn’t care. I just knew I was in penguin heaven! The best part was that I have this memory with my Son and he has it with me. My first bucket list item has been accomplished!

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Our last day was spent at Cape Canaveral. It was a chilly day for Orlando but we didn’t care. We went on a 2 1/2 hour bus tour and saw a lot of locations where NASA would launch from. Its very impressive. If you haven’t gone I highly recommend it.

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Today would mark another bucket list item as complete. I was going to meet Nancy Beth!! She so nicely took a half day to come meet us and hang out. I was so excited to finally meet her. We have been talking every week since the holiday’s. She’s so upbeat and has a sense of humor I appreciate.  Sure enough she did not disappoint. We had lunch together and went to a few more exhibits. In true dork form, I managed to get my credit card stuck in such a way that I almost wasn’t getting it back, but thankfully I redeemed myself.

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We will forever be bonded by our matching pink NASA sweatshirts!

I had a fantastic week and I can confidently say everyone else did too. The only thing that would have made it better is if I could have brought Bella with us. She was on my mind the whole week. I did call twice to check on her. She was acting OK but she was having some intestinal issues (probably nerves) and needed probotics. I cannot wait to get my princess and love her and snuggle her.

12 more hours until we are home.