Purr

I have been blogging for 5 years and I’ve never had a guest blogger. Not because I didn’t want to but more so in that, I didn’t realize it was a thing. Whelp, it is and today I have invited a longtime Twitter friend to take over. I introduce you all to Michael. He hates cancer as much as I do but for different reasons; he’s also a solid blogger in his own right.   

Without further adieu……


It’s 2:25 pm

overcast

This is the first time that I have been invited to share a blog post and I have been wondering what to write about. Our gracious hostess Susan said I could write about anything and so inspired by my fellow writer Radha, I decided to share this:

My wife Lori Ann and I loved cats, during our time together we shared our house with 4 cats and her nickname was Kitty.  I had given her that nickname even before we first met and it fitted Lori perfectly. What made this so much fun and fitting is that Lori didn’t see herself as a cat person, she had always had dogs growing up.

But after graduating from Western Michigan University, she went to work for a big department store and rented a cute little one apartment from an older couple, the Caves.

It was here that Lori discovered her inner cat so to speak when she first inherited Carolyn Cave’s moms’ cat, Geraldine. It was supposed to be a short term foster but Geri and Lori bonded very quickly and so Lori owned her very first cat. That went well and Lori enjoyed coming home to see a happy face welcoming her home. Of course, Geri had issues whenever Lori had to travel for her job for weeks on end. While Geri knew Carolyn, she really missed Lori when she was gone and soon whenever Lori pulled out her suitcase, Geri would hop in and wouldn’t want to leave.

Then Lori started seeing another cat that would be slinking around looking for for some food. It turned out that this was Junior and when his human had passed away, the son basically tossed Junior out on his own. I met this man sometime later and had the pleasure of telling him what an asshole he was in no uncertain terms.

Well, Lori being Lori felt really bad for Junior and renaming him OSK, began a campaign to give OSK a home again. This was much easier said than done as we later on suspected OSK had been abused by the son and had his trust broken.

Lori, aided by her dad, built a warm shelter for OSK in her garage and put food out. Winters are brutal in Michigan and a small cat outside, well they don’t do so well. Add in the fact that Lori learned OSK was declawed on his front paws and you can understand the urgency in which Lori had in trying to rescue him.

Slowly OSK started to trust her and she remembered the moment he let her pick him up and was able to hold him in her jacket for 10 minutes. She told she cried so many tears that they froze on her cheeks. Then as spring popped up, OSK decided to trust Lori fully and came into the house on his own. He curled up next to Geri and fell asleep for hours.

OSK was nicknamed “the ghost cat” because no one ever saw him, he always hid when Lori had company. When I visited Lori from California, I had told her I was a “cat whisperer” and by the end of my 10-day visit, OSK and I would be pals. It wasn’t until the 9th day when she came home and found OSK sleeping on my chest.

Now while I called her Kitty and she loved the nickname, she was a bit shy about the name when she was at work or with her peers. So we came up with “purr”. It was our word when we were out and about. We had a hand signal that we flash (cat gang members, yo!!) across a crowded store of family function and it meant “Purr”. The other person would shrug their shoulders in acknowledgment. Soon “Purrs” became so automatic that when the word was said, shoulders here shrugged, even when she was asleep during chemotherapy. Chemotherapy?? Why of course, this is a cancer blog, isn’t it?

I would whisper “Purrs” in her ear after her chemo was done and while most of the time when I or one of her angels would nudge her awake, Lori was sluggish and sleepy, whenever I would say “Purrs” her eyes would open wide and she would smile the most beautiful smile.

Lori entered hospice in May of 2013 and even as she faded, her long journey complete, she still would make the signal for “Purrs” and I would laugh and shrug my shoulders, we had done this so long it had become an automatic shoulder shrug. I still will whisper it once in a while, mostly when I see Lori in my mind’s eye as we were doing a fun activity or shopping, living life. Its a reminder of a wonderful soulmate and I hope you enjoyed reading it.

My thanks to Susan for allowing me to share this with her readers.

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Paladin the House Cheetah

You can follow Michael at The Inner Circle and I hope you do.

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

Estimates Are Better Than Nothing

I need to talk about something that’s been really nagging at me. Please hear me out. Disclaimer: I’m a wee bit fired up, so don’t say you weren’t warned.

I’m not going to beat around the bush. The last week couple of weeks, and I’m still struggling to understand why, there were a pocket of individuals that seriously took exception to the use of certain Metastatic Breast Cancer numbers and statistics.

First and foremost, before ANYONE gets their fur raised: Yes, I know and agree that the SEER database is flawed. The database hasn’t and still is not correctly counting/tracking breast cancer patients that Metastasize. They are ONLY counting those patients diagnosed from day one (de Novo). Additionally, there’s the other question of how the MBC deaths are recorded. Is the death certificate correctly reflective of cause of death or a secondary complication? That could also have an impact on the true count and tracking of MBC patients.

Howthefuckever – bottom line, we can ALL agree, myself included, that we currently do not have a perfect study, calculations, formulary or recipe that will give us exactly perfect-on-the-nose-without-a-doubt figures for “the numbers.” We can agree on this, yes? Good.

Now that that’s out of the way….

Due to the above, (what we all just agreed upon), there are ESTIMATED numbers and statistics that are used among Oncologists, researchers, advocates and literally anyone in the medical field to demonstrate certain facts regarding BC/MBC. Let me say that again. There are ESTIMATED numbers and statistics that are used. Are these numbers perfect? Please refer above for that answer, we just covered that.

Estimated Number of Deaths

ACS does a through job of putting out estimates every year for estimated cancer statistics for all cancers. Including estimated number of people going to be diagnosed, estimated number of people that will die, incident rates and so on. It’s broken down per state and for the entire US.

Percent of Recurrence

While this issue with SEER exists, some study’s have been done to tackle this. However, this one is a huge trigger. Most curiously it’s with MBC Patients.

Beth Caldwell referenced one such study in her blog. In the 2013 study that focused on HER2 status on recurrence, it was concluded that it could be as much as 36% recurrence up to 12 years.  MBCAlliance, MBCN and METAvivor all align with an estimated 20-30% recur. Christina Curtis at SABCS presented a slide in front of hundreds that also referenced “20-30% of patients will recur with metastatic disease.” For those that weren’t in that conference Hall, not a single person stood up to correct her or question her on that statistic. I was there. It didn’t happen.

So, it’s 2019 and we have some new numbers, Here’s what we have according to The American Cancer Society.

  1. An estimated 42,260 people will die of MBC.
  2. An estimated 116 people will die every day from MBC
  3. An estimated 20-30% of those diagnosed with early stage disease will recur as metastatic – up to 20yrs after successfully completing treatment

Everyone wants to have correct data. No one wants to be caught talking out of their ass. More importantly, true and correct data is critical to researchers working to save lives. But, Like it or not, those are the estimates used and will continue to be used by the majority of people speaking for and about BC/MBC.

Now, just because these are estimates, that doesn’t mean organizations or individuals can just DECIDE to change or skew them to suit their agenda. It doesn’t mean it’s OK to dumb down the urgency that advocates have been pushing for. And it doesn’t make any sense whatsoever for other MBC patients to demand other patients/advocates to produce study’s or data to prove the numbers that we post about. THAT’S NOT THE POINT. At the end of the day, Advocates are working in the field, traveling, trying to move the needle for EVERYONE. Is nitpicking about how we don’t have accurate data, something we already are painfully aware of, something we want to waste energy on between each other?

After this week, I am officially done justifying my use of numbers/statistics that are widely used. We all have more important work to do. It’s January folks. We have a long year ahead and no one knows how much time any of us have.

Let;s make this year count.

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

 

San Antonio & Setting Goals

I have so many thoughts swirling around. It’s been a minute since I’ve written. Every time I’ve tried to carve out time, something else takes my attention.

When I started writing this I was on a plane. In the middle seat. I loathe the middle seat. I have claustrophobia issues. I was on my way home from a week in San Antonio; attending The San Antonio Breast Cancer Symposium. I had been trying to get there for 2 years. This conference is the largest conference dedicated to all things Breast Cancer. Researchers and Oncologists from 90 countries present results of trials, studies, data they’ve worked and collaborated on. You name it – they were probably talking about it. It’s basically a “who’s who” in the Breast Cancer space. Five days – from 7am until 10pm.

This being my first year at SABCS, it was also my first time representing METUP in my official capacity as President at a conference. METUP has been going to this conference for the last three years. Each year included a silent protest where signs are held outside the most attended session of the conference which happens to be where the Komen Research Award winners are presenting. This year would be no different.

The signs always conveyed a clear and concise message directed at researchers. Previous messages were: “Cancer Doesn’t Discriminate Neither Should You” “Help Us Help You” “Metastatic Research Now” “Silence = Death”

This year we had two messages. Our signs had a message on both sides: “We Need Years, Not Months” “Do What’s Right, Not What’s Easy”

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METUP Protest – SABCS18

We received so much positive reinforcement & feedback. We even had one person join in and hold a sign with us. Afterwards, I was told by one person they disagreed in our choice of timing for our protest. That’s why it’s called a protest. History has shown, however, that change doesn’t come from waiting for it to happen. Change occurs when you take action to make it so. It’s especially important when my life is on the line – even yours.

I’m extremely proud of what METUP has accomplished since I’ve come back to the organization. We held our 4th and the most successful Die-In in Washington D. C. this past October. We’ve added a Diversity Coordinator & a Compliance Coordinator to our team and we closed the year with a protest that grabbed the attention of some impressive people in the medical community.

Aside from all the fascinating information learned from brilliant individuals from all over the globe, it’s the best opportunity to meet “IRL” and catch up with the friends you’ve made on social media platforms – most notably Twitter. (#BCSM shout out!)

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#BCSM Live

Many great connections were made. Constructive dialogue took place all week; with the anticipation of fostering new ideas into action.

As a new advocate to the symposium and not a grant recipient from the Alamo Foundation, there was a glaring absence in access to information. If you want to attend general sessions, exhibits or posters – all of that information is clearly available either online or in a downloadable app. What’s not available, is information for sessions designed specifically for patient advocates, “hot topics” or panels. Invitations that come via email don’t go to all patient advocates. It all ends up being conveyed by word of mouth once we’re there. IF we’re lucky.

So, San Antonio Breast Cancer Symposium – if you’re reading this, I have some suggestions to make the conference more “Patient Advocate Friendly”:

  1.  Update the Advocate button on your app with actual information about conference events instead of the Advocate webpage which is useless.

  2.  Have a room for Patient Advocates where we can take a breather if we need to. These are long days. Metastatic Patients, Patients out of treatment get tired and we don’t all stay close by. Finding a place to sit is very challenging. This would be so helpful. Especially if the shuttle busses aren’t going to run all day.

  3.  If you’re going to send email invites that are for ALL patient advocates – send them to everyone. Don’t send them to some and ask them to finish your job by “passing them on” it’s not always going to happen. People will feel left out.

  4.  Currently, there are Hot Topic dinner meetings, which is great. Perhaps, add Lunch & Learn topics (in that Advocacy Lounge I suggested in #2) for those that just can’t stay until 5/6pm.

Just my two and half cents. Think about it.

It was extremely bittersweet at the end of the week. Saying goodbye to friends always sucks after spending so much meaningful time together. It’s much harder when you know the following year, not everyone will be returning and (not to be a wet blanket) it could very well be me. With that in mind, your friends hug you a little harder and a little longer and you both cry a little; while insisting each of you will be back to do the whole thing again next year. Hopefully. Maybe.

METUP has some lofty goals for 2019 that will be sure to raise eyebrows and get some attention but with our team, a growing base of volunteers and a lot of fundraising, nothing is impossible.

“You may never know what results come of your actions, but if you do nothing, there will be no results.”
― Mahatma Gandhi

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