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!

It’s 2020 and the Whole World is on House Arrest

Like so many, I had high hopes for 2020. Super high hopes actually and not just because of the obvious this upcoming November. Hubs and I have birthday’s six months apart with mine being the first. A fact he is quite happy to remind me of every . chance . he . gets. There were plans in the works for an epic vacation. But I’ll come back to this in a bit.

Last month, was my PET/CT. It was scheduled at Sloan Kettering. The days leading up to when we had to leave, I kept in contact with the hospital. It was still early on but NYC had already been given ‘stay at home’ orders. Restaurants and non-essential businesses were closed. There was some chatter about closing the city completely. That never happened of course so we were good to go. I’m not going to lie, the drive to the city was a little creepy. Any other time it would be an absolute miracle as the usual traffic and back-ups on the bridges was nonexistent. The hotel was a ghost town. I am pretty sure we were the only guests staying on the property. There was no going out to dinner or walking around the city. It was TV and room service. The streets were noticeably absent of the normal crowds of people as we drove to Sloan the next day. I had the scan and we drove home.

 

I am very happy to report that I am good for another 6 months as my results were stable – again.

Soon after, we all started hearing phrases like ‘social distancing,’ and ‘flatten the curve’ and we were all told to stay home.  We were quarantined at home for 14 days because we had been in NYC. Neither of us had symptoms or were sick at all but we stayed inside in case we were asymptomatic. I have only gone out into the world one other time – for treatment. Otherwise, I have been home, watching the news, looking outside, keeping in touch with friends and family online or by phone. As much as I like to be home and I do like to be home; I want to runway like a prisoner planning a prison break and never come back. Seriously, as soon as the world opens up again and I can go where I want, I may disappear forever. There is something about being told you have to stay put that all of a sudden makes you want to do ANYTHING but that. Even my pup Bella is completely fed up. She’s beginning to look at me funny; almost like she’s plotting something sinister for some night when I am sleeping.

It feels like we are all living in a real-life version of the movie thriller Pandemic. Except it’s a lot less exciting and a whole lot more annoying. It makes me long for 2019 a little bit.

Back to the trip that never was. This year we both turn the big 5-0 and we’ve been planning on taking an epic trip for the last year. A destination that has been on both of our bucket lists – Rome. (Yes, I know) So, OF COURSE, days, before we were going to book the trip the entire country of Italy, became locked down. (Thank you novel virus)

I am making a prediction that we will still be on lockdown by the time my birthday rolls around next month. That completely bums me out. I hope I’m not right. I don’t normally make a big deal about birthdays but I admit that I was looking forward to being quite annoying about it. Balloons, streamers, a big over the top cake. I was going to cash in on all the years I was all – ‘Meh’ about it. I am trying to focus on the bright side of turning 50 during a pandemic – I have additional time to plan an even BIGGER epic extravaganza!

On a related note, I am now a proud member of AARP! Yup, that’s right, I said it. I used to get annoyed when an unsolicited email would find it’s way into my inbox, however the other day, I went to their site (on my own) and became a card-carrying member. I have to admit that it’s not at all what I imagined it was going to be. I won’t officially be able to take part in their benefits until my actual birthday but I already have my eye on a few things I plan on taking advantage of. I am gifting myself Vision Insurance for my birthday! SO EXCITED. It’s the little things, isn’t it?

Aside from becoming a missing person once the world opens back up, the very first thing I plan on doing is going to the salon. I may be turning 50 but I sure as hell will NOT be keeping these gray hairs and LOOK older than I am. Also, I have been making a complete disaster out of my bangs. Every pair of scissors should be hidden from me until this whole thing is over. I am not even kidding.

Wash your hands, Stay inside and above all Stay healthy.

 

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Sometimes It Takes A Village

There are certain times in our lives when we can’t do it all on our own. It can be very frightening, especially when your life is literally on the line. What started out as dire situation last Friday afternoon, for my friend Amy, ended up being a testament to how people can pull together and help their fellow man (or in this case – WOman) simply because their story was shared through social networks.

Here’s what happened…..

Last Friday afternoon, I received a text from my friend (and fellow MBC sister from another mister) Amy. After a bit of texting/venting, the situation was this: Amy had been accepted into a clinical trial at Weil Cornell in Manhattan – which is fantastic because Amy’s breast cancer had now progressed to her brain and there are few if ANY clinical trials for cancer patients with metastisis to the brain, let alone trials specifically for MBC patients with brain metastisis – so this was a BIG fucking deal. The issue at hand was that she had just been informed she had to return to Cornell that following Monday (2 days) to begin the trial and she had to stay for five days.

It’s December. It’s the week before Christmas. In Manhattan. Do the math.

:Breathe:

Amy had already called the American Cancer Society. The Hope Lodge was not an option as they needed more than 2 days notice & they were full. That’s helpful, right? I suggested she call back and inquire about another program they have called Keys of Hope and while she did that I would check on a ‘few things’. I may have lied – a little. What I actually did was the only thing that I felt was going to give Amy the best possible chance of finding someone anyone that had a suggestion, a link, an idea or something:  I made a video and posted it on Facebook. If you know me – really know me – you’d know that I am not comfortable making ‘impromtu videos’ for social media. Public speaking and interviews, sure – IF I am prepared. Off the cuff videos, not so much. But this was important and not about my comfort level. ugh  video

It wasn’t long before friends were sharing the video on their pages, in groups, and tagging friends that might be able to offer suggestions or even help. As much as social media can be a detriment it can also bring out the very best in people – all working together because someone is in need. This was one of those times.

Angels Do Live Among Us

Not thirty minutes after posting my plea for help, I was put in touch with Tracy Milgram thru METUP Board member, Abigail Johnston. Tracy is the founder of BRCAstrong a non-profit organization that supports and educates Previvors and Survivors. Tracy’s organization recently partnered with PALS – Patient Airlift Services. PALS, is a non-profit that provides free air transportation to medical treatments/appointments to those patients in need. Tracy was confident that through PALS, Amy would be able to get transportation to her clinical trial and have one less thing to worry about.

WHAT?? I immediately started texting Amy while I was messaging Tracy on Facebook. Multi-tasking! Soon Amy was talking to Tracy and working out the details of her flight.

I went back to Facebook to check notifications, comments and suggestions about lodging for Amy. Everyone was being so helpful. There were attachments with lists and websites, names of other people to contact AND THEN…….

Almost at the same time, I received a message via Facebook and a text. The text was telling me that someone was trying to reach me and the message on Facebook was from that person trying to reach me asking me to call her. I called Sara (I am changing her name per her request). Sara is someone I know in real life. I met her this past summer. I can’t say enough about her – love her to pieces. As Sara and I were talking she told me she saw the video and she couldn’t not help. I told her Amy has transportation secured thanks to Tracy and PALS and the only thing we were working on was lodging.

Then Sara said this…..

I want to pay for Amy’s hotel

OHMYGOD!! I cried. Amy was all set. She was going to be at her clinical trial on Monday.

I hung up with Sara and called Amy. I will never forget the sound of joy in Amy’s voice when I told Amy she had to call Sara immediately and why. It was a combination of surprise, tears, relief and laughter. It was the absolute best sound ever.

There was only one thing left to do.  ugh.

(And now you know why I don’t make videos. Can you say “Hot Mess”??)

It was a long afternoon. It was a stressful afternoon. But it is true, sometimes it does take a village. On December 14th, that village rallied for Amy and took care of one of it’s own. I am happy to report that Amy has spent this past week in NYC getting the treatment she needs in the clinical trial that will eliminate the little bastards in her brain and keep them from returning.

Thank you to everyone that shared the initial video, tagged friends, sent me messages and offered suggestions. This is the power of community and how the connections we make, the people we meet; we never know how important they may become or how big of a role each of us could play in one another’s lives. Those of us with metastatic cancer knows how much time we have; using that time to help where you can and work together is so much more fulfilling. I especially want to express a heartfelt, huge thank you to: Tracy Milgram, BRCAStrong, PALS and Sara or as I collectively call them angles on earth without whom none of this would have been possible. 

My dearest friend Amy ~ I love you so much and when you get back home….                   you owe me lunch.

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brcastrong
BRCAStrong#UnBRCAble

 

Solar Powered Florida Adventures

Last week I did something I rarely do but realized I should really do more of – I took a mini vacation. The two days in Albany and the press that followed after took more out of me than I realized. I was exhausted. So, when the opportunity came for me to travel to Florida for a few days I (reluctantly) said yes.

My adventure began with a red-eye flight out of the Niagara Falls airport (yeah, who knew?) via Spirit Airlines to Ft. Lauderdale, FL last Sunday. Apparently, if you pack light enough, something I am NOT known for, you can fly very reasonably on this airline but don’t even THINK of using a legit carry-on bag. Nope. Think small backpack or something half the size of a carry-on suite case and it should also function as your purse ladies or you’ll be paying an extra $50 for luggage. I digress….

I landed in Ft. Lauderdale at 5:30am Monday and it was a glorious 75 degrees!! It already felt like I was going to have a good time. My second wind was waking up and asking about breakfast.

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My early morning breakfast view at The Hilton Doubletree

I should have taken a nap but where was the fun in that? In stead, I decided to take advantage of the glorious weather and get into my (GASP) bathing suit and head straight to the pool for some much-needed Vitamin D. I am extremely deficient after all. It would be very irresponsible of me not to lay out in the sun for a little while, right?? Yes, of course I had sun screen.

After a lovely afternoon of sun and Piña Colada’s, I made plans to see a friend in Key West. The last time I was in Key West was in 2014, which was my first time. It was a difficult trip for me because of all the bone and joint pain. I was also 45 lbs heavier. The heat made moving around that much more painful. I was looking forward to going back not as that person and creating some new memories.

Bright and early on Tuesday, I began the trip to Key West. The drive thru the different Key’s is so nice. About 4 hours later, I rolled into New town Key West and checked into the hotel. I had a bit of time before dinner and meeting up with Monique so that meant I had to check out the pool. It was a bit warmer at 85 degrees but still absolutely lovely. My brain can’t even comprehend leaving anytime soon and returning to cold weather.

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I met Monique for dinner in Old Town Key West at a lovely restaurant where she works part-time. It’s on the water where the cruise ships dock. There is a large crowd that gather for cocktails at the outside bar to watch the sunset. The food was amazing and the dessert was from heaven. Yes, I could have had the Key Lime Pie but when Caramel Crème Brûlée is on the menu you order the Caramel Crème Brûlée. Always. Thems the rules.

We had a LOT of laughs and a crazy adventure after dinner that involved visiting a local dive bar off the beaten path that, if I had to guess, is probably only known to the locals. Probably for good reason. The rest of the night will, as they say, stay in Key West.

I wrapped up my stay with lunch with Monique at the Blue Macaw for Conch Fritters and then a quick picture of the Southernmost Point. A landmark that I didn’t make it to last time I was in Key West because of the extreme heat.

I also have to add that if ever in the area, at Mile Marker 15, you simply MUST stop in at Baby’s Coffee. They roast their own beans and have the most outstanding blends of coffee. There are also sandwiches and snacks if you’re hungry. If you’re a coffee connoisseur but not going to be in Key West, you can order their coffee online.

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Wednesday night, I very begrudgingly made my way back to the airport to begin my way back to the cold tundra of NY. I was already beginning to become sad knowing that I was leaving the lovely sun and warm weather but Adam and my pup Bella were waiting for me to come home. Oh, they are SO lucky I love them so much.

I barely remember getting back home Thursday morning. It was sometime around 3am. I just know Bella came our of Adam’s room to great me and jumped into my bed with me. When it was time to wake Adam up 4 hours later, this is how I woke up…..

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This trip taught me something important. If I’m going to keep doing the things that are important to me. If I’m going to keep trying to make a difference in the world, I need to remember to take time for me too. Not just Dr appointments. I need to remember to take breaks and recharge. I can’t run myself down or I won’t be good to anyone.

It was great to get away. I’m so lucky that I was able to. I had a fantastic time and I am absolutely counting the days until I can do it all over again but God help me, coming home to that furry face is the sweetest thing ever.

Something To Look Forward To

In April, at The Lowes Philadelphia Hotel in Philadelphia, PA, an organization called Living Beyond Breast Cancer will be holding their 9th annual convention for those living with Metastatic disease.

I have decided to go and with the help of a travel/lodging grant I can.

Much to my surprise the grants are funded by none other than Susan G Komen.

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I’ll admit, I did have some reservations about requesting a grant from an organization I have huge problems with but then again by accepting it, learning as much as I can and sharing that information with my readers and social media followers, well, that is more important to me. I still feel Komen could and should do more for metastatic women and men and I still feel they view us as pretty pink Breast Cancer’s dirty little secret. But that’s an issue for another day.

I’m as excited as I am apprehensive. This will be the first time I will be in the company of women facing what I have for the last 18 months. I’ve been talking to many via Facebook and/or Twitter and with some, formed a bond. We have talked about how nice it would be to all be in one spot and talk face to face. In April, we will get this chance. While I am over the moon about this, the reality is that our bonds of friendship will grow stronger and while we have no cure for our illness this may be the last time some of us see each other. As much as that scares me, I’d rather have this chance than none at all. All of these women want to be part of bringing metastatic breast cancer to the forefront and help further research efforts. An amazing group.

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I am hoping to get a lot of good information from the seminars I’ve signed up for. There are 2 Saturday and 1 Sunday. I plan on sharing what I learn in future blog posts. So, be sure to look for them at the end of April.

Many of us, including my roommate, are arriving on Friday night. We have casually talked about meeting up possibly for dinner. That should be a lot of fun.

I’ve already started mentally preparing what I’m going to pack. As usual, I will over pack because that’s just what I do. This is only the second time I will be traveling without my husband. This also makes me a bit unsteady but I’m sure once I get there I’ll be OK. I’m most concerned about my connection – and missing it. I can’t walk very fast and I’m terrified I’ll have to navigate an airport I’m unfamiliar with in little time.

I’m currently trying to fight off some kind of bug. Fever today was 100° and the fluid in my lungs continues to rattle around. Hopefully I can keep it at bay but the fluid can’t be a good thing. Tuesday will be 3 weeks I’ve had this lung issue. Time will tell……..