Optimistic about finishing dessert

Reflections & The Future

It’s the last week of September and there is no denying that Summer is definitely over. I’ve been in a deep denial over it. Deep. I could ignore it with the temps still tickling the 80’s but that’s changing now and it’s getting serious with helping Adam get college applications and necessary paperwork in before the end of October.

There were no big vacations this summer. Instead, Adam and I went on a few college visits that included a trip to NYC  where we killed two birds with one stone with an appointment at Sloan Kettering for me and a tour of NYU for him. The other college visits included University of Buffalo and University of Rochester, although since we live in Rochester I don’t know if you can technically consider it a ‘visit’.

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University of Rochester

The high-light of the summer was absolutely our trip to NYC. We packed a lot in those 2 days. I even managed to squeeze in something from my bucket list: Serendipity 3!  If you don’t know, Serendipity is this tiny, eclectic restaurant that is most noted for their desserts, specifically the Frozen Hot Chocolate. Reservations usually need to be made weeks in advance BUT if you are willing and able you can take a chance at walking in and waiting for a table. Adam and I went by what Google said were their slow vs. busy times of day and decided to just go and see what would happen. It was 4:30pm so a little bit of a wait wouldn’t be THAT tragic. At 6:20pm we FINALLY got a table! Our waiter told us that the table we were seated at happened to be Marilyn Monroe’s favorite table. Sure – I bet he says that to everyone he serves! We intentionally didn’t get stuffed on dinner so we could enjoy a decadent desert. Let me warn you now – they do not skimp on the dessert portions – AT ALL. The ice cream creations are served on top of a separate plate because they are literally overflowing and spilling everywhere. Let’s just say that experience didn’t do me any favors. I was absolutely miserable the rest of the night but it was totally worth it.

The next day we toured NYU. Wow. I absolutely understand why Adam wants to go to school here. Besides the obvious – being in Manhattan – the ‘campus’ includes buildings all around Washington Square Park. It’s a very different college experience but one that also affords so many more opportunities to do and see things not accessible or available anywhere else.

I’ve tried to pin Adam down on where his heart is with regard to his first choice. He won’t give me a straight answer. I guess we will just have to wait and see when the acceptance letters come and he has to make a decision.

I’m hoping that he and I can still squeeze in one last trip before he goes off to ‘wherever he’s going off to’ after graduation. A lot depends on how far away he’s going to be. If we don’t, he does have a class trip to Italy in April so that will just have to do!

This week I’m headed back to Sloan to meet with a GI Doc to see if we can start to figure out what is causing my ongoing weight loss and nausea. I’ve stopped one of my Cancer meds – Ibrance. I’ve weaned myself off the Gabapentin I was taking for pain and most recently I cut my dose of Topimax (anti-seizure med for migraines) in half. I’m basically down Faslodex for the Cancer and the bare minimum for everything else. The next person who tries to tell me this is a ‘med issue’ is going to get a black eye because so far – I still feel pretty gross and the weight is still coming off. At my Dr appointment on Thursday I was down another 6lbs.

And finally – stay tuned for October. I’ll be headed back to DC to join my fellow advocates on October 13th – Metastatic Breast Cancer Awareness Day to March and participate in the 2nd Annual Die-In for Metastatic Research. I promise you, this year will be epic. I’ll have more information soon but we hope to be able to stream live!!

I invite you to check out a new endeavor I’m part of that I’m wildly proud of:

Before You Post That Meme….

​We’ve barely had time to dip our collective toe into September and the just like the Christmas decorations we see way ahead of schedule, it seems the Pink ooze that is October has already begun.

To be perfectly honest, I feel like asking for my high blood pressure meds back (that I finally got off of) until November arrives.

Breast cancer is the ONLY disease that is sexualized and trivialize. It’s the ONLY illness that is treated like a sorority, where you’re literally welcomed in by others. Do men go around wearing a jock on the outside of their clothes in the name of ‘awareness’ for testicular cancer? Do they wear a strap on to to bring awareness to the CAUSE of penile cancer? Nope…because it’s ridiculous. 

So, why sexualize cancer of the breast? What’s the point of a cryptic Facebook post, really? How is a selfie going to help anyone in actual need? What is going without a bra truly going to do for anyone? And who is going to know you’re doing it unless you either go topless or wear a thin white t-shirt to show your bare breasts – which again is only sexualizing a deadly disease….a disease that kills 113 women in the U.S. every day. A disease that I will die from because we still don’t have a cure for.

Some of these ‘fun and games’ in the name of awareness even hijack the one and only day dedicated to the Breast Cancer that kills – Metastatic Breast Cancer Awareness Day  (October 13th). You’d think that out of 31 days MBC would get more than one day of recognition. After all 40,450 Men and Women will die in 2016 because of Metastatic Breast Cancer. Don’t they deserve more than one day?

I’ve been accused of being angry and insensitive because isn’t any awareness good for the cause? I make no apologies for my strong opinions about my emphatic objections to the way Breast Cancer has been reduced to a cute, sexy marketing campaign and not the serious and potentially deadly disease that kills so many YOUNG women as well as men every day/every year. 

If raising awareness is important to you personally, it would seem to me that actually doing something that would have a direct impact on folks with Breast Cancer or helping to educate those that could benefit from it would be the better option than just choosing to do something that you could do any other day of the week.

The day I stop being angry and pissed off about how the public views and treats Breast Cancer will be the day the landscape changes or more realistically, the day I die from MetastaticBreast Cancer.

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As The Stomach Turns

So, I’ve been dealing with nausea, weight-loss, lack of appetite and change in bowel habits (diarrhea) since maybe March. No one has been able to figure it out. No one wants to take ownership of it. Not my Oncologist and not my GP. We’ve just been monitoring it. 

Nothing stands out in my labs, my Oncologist adjusted the dose of my Ibrance. Palliative Care gave me a stronger anti-nausea medication and now I have Reglan. But nothing changes. 

Except that now I have fun things happening that required me to make an appointment with my OBGYN. I just assumed that all the estrogen suppressing meds have finally taken its toll. Not so much.

When I caught my Dr up on the shit show (pun intended) of the last 6 months she took it all in. She asked me questions. Then she did her exam. Boy I had NOT missed that. Ladies you know what I mean. I was a bit confused when she told me she was going to do an internal exam but why not? Let’s go for the full treatment. When she went to the left side of my abdomen and pressed I let out a sound I didn’t know I could make and I’m quite sure broke windows. My Dr looked at me with a very grim face. She said (and I’m quoting her), “I’m very concerned about you. That area is your colon. Given your medical history you need a complete GI work up as soon as possible. This has gone on far too long”

Well, shit. I’m torn between feeling satisfaction that SOMEONE finally heard me and on the other hand being totally freaked out that there is something really very wrong and has been wrong for a long time.
I’m very anxious to get to Sloan Kettering now. I’m curious to get Dr Modi’s opinion and input on this whole GI thing. I know she can’t do much for me that day but she can order the tests and I can have them done when I get back home. I am hoping that if there is extra blood work she can request that she does so I can get a peek into what may be going on. One thing about Sloan, the labs turn the blood work around with lightning speed. 

Unfortunately, I have been on the Google and I know I shouldn’t have but I need to know as much as I can so there are absolutely no surprises. I’d rather know all the worst case scenarios now and have it be something minor than bank on it being minor and being smacked in the head with something horrible.

The count down starts…..

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Viewpoint with Ken Rosato

Just a quick follow up post.
The interview I did with Compassion & Choices New York a few weeks ago, aired last night. I wanted to share it here for those of you that may not regularly visit Facebook or Twitter. 

I’m very pleased with how this turned out. Sometimes after editing, an interview can look very different than how it really happened. Not so this time. There was literally no editing done (that I could see anyway). 

I’m very appreciative of the way Ken Rosato handled the interview and questions. He was every bit the professional you’d expect while also very understanding and compassionate about the subject matter.

Ken, if I’m lucky enough to have you read this: Thank you SO much for giving Medical Aid In Dying a platform on Viewpoint. You’ll never know how much it meant to me.

Our segment is the second one once you click on the link.

http://abc7ny.com/society/new-york-viewpoint/32277/

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The Numbers are Not in My Favor

At my last update there was concern over my rising tumor marker: CA 27.29. I had my labs done on Thursday and the decision was made to schedule a PET/CT for August 2nd. The rising numbers coupled with my continued weight loss (I’m averaging about 10lbs a month) and my over all feeling like crud has my team feeling there is enough concern to warrant the scan. 

I’ve been thinking all morning. I’m working in a visit to Sloan Kettering on August 5th to see my Primary Oncologist while Adam and I tour NYU. I’m going to see if the PET can be done earlier that same morning before my Dr appointment. I haven’t been scanned there in a while and due to the mixed reading I recently had that involved the lymph nodes, I feel it would be best if Sloan could do it. Hopefully, all the stars align and it works out. *fingers crossed*

On a lighter note….I recently returned from a quick advocacy trip to NYC. 

Compassion & Choices asked if I would share my story and why I support Medical Aid In Dying with WABC7’s Ken Rosato for his Weekend Show – Viewpoint. Of course I said yes! It’s important to keep this important topic at the forefront and keep the conversations going. It’s the only way to gain traction and enlighten people about why terminally ill people, like myself, want this legislation. 

The interview took place at the WABC7 studio in Manhattan. The same studio that Kelly Ripa and Rachel Ray call home! In fact, Kelly Ripa was live on the air when we arrived.

Corinne Carey, the Director of the NY Chapter of Compassion & Choices and I sat with Ken Rosato for 10 minutes. Corinne spoke about the facts and statistics of the other states that already have these laws in effect. I shared a shorter version of my story and why I’m in support. I also stressed to Ken that I am in NO way suicidal nor do I WANT to die. I want to live. God, do I want to live. That’s so important for me to have people that don’t know me understand. I so hope I made that clear. I think I did.

The segment, I’ve been told will air on July 27th and again in October. I’ll be sure to post links on my Facebook Blog Page and Twitter.

At least I didn’t look as awful as I felt on the day of the interview. 😉

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Nope, Not Worried At All

Last I updated, I was headed for a biopsy of my lymph nodes under my left arm and a biopsy of my ribs on the right side where I have had a large hard visible growth that is quite painful.

Both procedures were done on the same day and I was home by 2pm on June 2nd.
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The rib biopsy was by far the most painful. More painful than I remember it being. The “twilight” meds didn’t work and I was awake for the whole thing causing them to have to give me 3 doses of Fentynal because I could feel everything. My tolerance to pain medications is quite ridiculous. But boy did I sleep once I got home!

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I finally met with my Oncologist this past Friday.

The rib biopsy showed that I have a large collection of scar tissue from radiation therapy of my 9th rib from 2yrs ago. Per the Radiation Oncologist, side effects from radiation can continue long after radiation has ended.  There is no active cancer.

The lymph biopsy showed only lymph cells and no metastasis. This was very surprising but also a relief. Because this was something that showed up on the PET scan, I was pretty confident that the biopsy would be positive for cancer. My Oncologist’s exact words to me were: “We are cautiously optimistic but we will be keeping a close eye on this area going forward” Um…Ok. No so reassuring but not much I can do.

I’m still losing weight. Down another 5 lbs and to deal with that we are adjusting the Ibrance down from 125mgs to 100mgs. This should have no effect on the drugs fighting the cancer but more on the side effects of nausea and lack of appetite. 

Today, I received my tumor marker results. The one we watch closely is CA 27.29. Anything under 40 is considered normal. My number has been slightly over 40 for 3 months. This is significant because my number has been under 40 for over a year. Today, it jumped to 51.
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I know some will say that 51 is still pretty low and it is. I know some people that have their numbers jump up 2 or 3 HUNDRED points. But everyone is different and everyone’s numbers are significant to themselves. The fact that mine haven’t ever gone up like this and you add on top of that a suspicious PET (that for now is OK but we’re going to watch). I’m not feeling very good about this at all.

I said this back in May in an interview in Albany and I’ll say it again: “My prognosis is only as good as my next PET Scan”.  I’m very worried about my next PET Scan. A lot can go wrong in 12 months and I’ll be damned if I allow any of it to happen.

I have a graduation to go to.
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A Big Win For Choice

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Today the New York State Assembly Health Committee voted 14 to 11 in favor of the Medical Aid In Dying Act. This historic vote comes less than 2 weeks after the Bill was introduced by Senator Diane Savino and Assembly Woman Amy Paulin.

I am very proud to have been part of the beginning process of this Bill becoming a legal option in New York State and I hope to continue working with Corinne Carey and Compassion & Choices for as long as my health will allow.

Here is the link to the official press release from Compassion & Choices:

http://www.compassionandchoices.org/medical-aid-in-dying-act-wins-swift-assembly-committee-vote/