Would You Love Me If….

Would you love me if I burned dinner?

Would you love me if I forgot to buy toilet paper?

Would you love me if I dented the car?

Would you love me if I left Christmas shopping to the last minute?

Would you love me if I’d rather stay in on a Saturday night?

Would you love me if I forget to put gas in the car?

Would you love me if I hate to fly?

 

 

Would you still love me if I had a miscarriage?

Would you still love me if the doctor said it’s Cancer?

Would you still love me if I had scars from surgery?

Would you still love me if I no longer had breasts?

Would you still love me if I lost my hair?

Would you still love me if I could no longer work?

Would you still love me if medications made me moody?

Would you still love me if I couldn’t go out because of chemo side effects?

Would you still love me if the doctor said it was Metastatic?

Would you still love me if you knew I was going to die?

 

Will you love me…….now?

Inside Anxiety

Fun fact about me: I occasionally suffer from panic attacks. They began shortly after cancer became part of my life. They come out of nowhere. Randomly. Usually at the worst possible times.

I’m having one now.

I’m trying to distract myself.

If I don’t and I let the feelings wash over me, I’m afraid the tears will spill out and choke me to death. It’s a soul crushing feeling.

I know, deep down, that every day I’m inching closer to that day.

It takes my breath away. I can’t breathe.

It hits my chest. My eyes fill with tears.

It’s a battle to control my breathing so I don’t hyperventilate. I concentrate on not letting the tears leave my eyes.

I can do it. I can do this. Don’t let them see. I can’t let anyone see.

I’m ok. Nothing is wrong. Everything is ok.

Even though it’s not.

Today it is.

Right now is all that matters.

This moment.

Hold on. Hold tight.

Concentrate.

It’s almost over.

Breathe.

Breathe.

When “It’s Nothing” Becomes “It’s Something”

If you’ve been following my blog, you’re familiar with my track record of “aches and pains” that turn out to be nothing or have no explanation. It’s become kind of a light-hearted joke between me and my Oncologist. She will ask me how I’m feeling and I usually respond with something like: Does it matter? Because it will end up being nothing anyway. And then we laugh.

At my last appointment she wasn’t laughing. My continued weight loss has now gotten her attention and not in a “you’re gonna rock that bikini this summer” kind of way. When she asked me how I was feeling, I casually mentioned some discomfort I was having on my right side. It’s particularly bad after I eat. It’s not unusual that I go a day or two without eating until the pain subsides. That conversation earned me an appointment at the end of the week with my GI doc.

I like my GI doc. I haven’t seen Dr. C in a while but he listens and doesn’t shrug off symptoms or why you’re there.

He looked concerned from the moment he walked in. He had spoken to my Oncologist. He asked all the typical questions about why I was there; typing all my answers into my chart on the computer. The physical exam was next. He pushed and pressed all over my abdomen. When he pressed on my right side below my ribs I saw stars and the look on my face caused him to nod. He matter of factly told me my gallbladder was inflamed and it needed to come out. Huh?? But it’s always nothing. Now it’s something?

He began writing orders for tests. He wanted to make sure there wouldn’t be any surprises for the surgeon. Swell.

Ultrasound, Upper Endoscopy, HIDA Scan and then surgery. They scheduled the ultrasound later that afternoon -no time like the present. Endoscopy is this coming Wednesday. Doctor C isn’t messing around.

Hopefully, when it’s all over with I’ll be more comfortable and eating won’t be a nightmare anymore. I’m not going to lie, if I start gaining weight again, someone’s going to hear about it.

So this year, instead of a birthday party, I’ll be having a “Going Away Party” for my gallbladder! Everyone’s invited!

On the Road Again

 

Today I’m making my favorite trip again. *eyeroll*  I’m headed down to Sloan-Kettering for another fast and dirty trip for a PET/CT.

The last time I updated regarding my health, I was going to see a GI Oncologist at Sloan on September 28th to see if she could unravel the mystery that is me. I had only planned on being there over night so I booked the train for Tuesday, September 27th and invited my Mom to come along! In past 3 yrs she had never come with me to NYC so I thought this would be a good time for some girl time. Oh, life….it has such a way of throwing irony at you at the worst times.

Our trip to Manhattan was pretty typical. We were delayed. I can’t even get mad any more but I do get a chuckle when I hear the people around me freaking out about it. We ended up being about 3 hrs late getting in and we were pretty tired so, my grand plans of doing some sightseeing were squashed.

The day of my appointment with the GI Doc, we got there early – 9am. I always get to appointments early in the hopes that I can get in early. Nope. We waited almost 2 hrs before I was called back. It was another 90 minutes before I actually saw my Doc. I saw her nurse who took my vitals and I saw her Assistant who did a very intense intake. Then I waited some more. I was getting nervous because we had a train to catch at 3:40pm.

At almost 1pm, Dr. Ludwig walked in. I loved her almost immediately. She listened. She heard me. She validated me. She promised me she would get to the bottom of what was going on. And then she freaked me out with what she said next: “You need to change your plans because you’re not leaving today. I need to get you into imaging right away. Sit tight I’m going to make some calls right now and get some scans scheduled.”  *Gulp*

Then things seemed to go pretty fast. I had to make 2 calls immediately – one to the hotel and the other to Amtrak. Then a nurse came out – “Dr. Ludwig wants you to do a Colonoscopy and Endoscopy on Friday the 30th” Yeah, no. I had to give a speech at Adam’s school that day. I would have to come back. So, we scheduled that for the following Monday, October 3rd. (Sheesh!)

At 2pm I finally had my appointment time for an abdominal x-ray and a Lumbar/Thoracic Spine MRI. Two different locations. 5pm and 7pm. We could finally leave, go get lunch and relax before we had to go back out make our way to my appointments.

The Imaging office for the MRI was at an affiliate location connected with Sloan and in a very upscale part of Manhattan. While I was filling out the paperwork. My Mom started poking my arm and whispered loudly – “LOOK!”  I looked up and standing at the counter checking in was – and I’m not even kidding – Martha (freaking) Stewart. In all the times I have been to NYC this was the first time I had ever seen a celebrity let alone sat within 2 feet of one. My Mom was literally seconds away from talking to her when someone came out and whisked her away for her x-ray. And just like that she was gone.

While I was waiting for the MRI, I received a call from Dr. Ludwig’s office. The abdominal x-ray I had an hour earlier was OK and I was officially scheduled for the Colonoscopy/Endoscopy for the following Monday. (Joy!)

To make a long story….well, it’s too late to make it short so I’ll just jump to the why I’m going to Sloan today. So, the MRI was negative for any spinal compression or metastasis that would cause my spontaneous GI episodes. The Abdominal x-ray was negative for any obstructions. The Colonoscopy/Endoscopy was OK. The biopsies that were done – there were 4, including a gastric polyp, were negative. She also tested me for C.Diff, H.Pylori, and Colitis. It was noted that my stomach is very inflamed and angry. All of this is GREAT NEWS. The best news. One tiny little problem….I’m still losing weight, I’m still not able to eat all the time, I’m still battling nausea and I’m having GI issues and I just don’t feel good.

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There was a question as to when I would have my next set of scans. Stick to the 3 month plan or wait until February which would be 6 months. I was almost inclined to wait, however when Dr Modi, my Oncologist at Sloan heard that I’m not better and I’m down another 6lbs her office called me and said she wanted me to have the PET now.

I usually have the results the same day – one of the awesome things I love about Sloan – but my scan is late (3:45pm) and it’s a Friday so I’m not anticipating hearing anything until Monday.

*Fingers Crossed* Hoping to keep my ‘unremarkable’ PET scan streak going a little bit longer.

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The Day We Died At The Capitol

I attended a Metastatic Breast Cancer conference back in April in Philadelphia hosted by Living Beyond Breast Cancer.  It was a memorable experience for many reasons. The most notable was that a new movement was born from that conference.

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MetUp is the brainchild of fellow mester Jennie Grimes. As was the rest of us, Jennie was sick and tired of watching our friends die while the public at large and our own government does nothing and wanted to begin a movement that will rattle cages and make people stop and rethink research priorities.

Also, during that conference, Beth Caldwell put her admiration of the women’s sufferage movement into a modern action. We were going to ‘Die’ at the conference. We gathered 110 women and laid them down in the hallway and a moving ‘eulogy’ was read. Not just any eulogy but one that told of our anger and distain for the lack of any real progress toward a cure and that losing 113 people every day was unacceptable.

Since that day we began working tirelessly to stage another Die-in that, we hoped, would get more attention and really rattle bigger cages. Washington DC was that cage. Through the efforts of many but specifically the core members of MetUp, meetings were set with some key members of Congress and the plans were being made to host our first Die-in as an advocacy group.

Yesterday, folks began to gather on the West lawn of the Capital. Signs were brought of loved ones lost and those that couldn’t attend.

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The buzz in the air was that of emotion and excitement. Meeting people that I only knew on-line and putting faces with names was so surreal. And they were just as excited to meet me as I was to meet them!

Papers with numbers were handed out in preparation of the Die-in. People began to get into groups and Paige Rosllio sprung into action. Immediately, Paige began to take charge and call out groups of numbers.  It was really happening.

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When every last person was in place, Beth, Paige, CJ Corneliussen-James and myself stood near the fence adorned with posters of every one with metastatic breast cancer living and dead. And it began…at the stroke of Noon.

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After a brief thank you to all in attendance and reading the MetUp Mission Statement, I introduced Beth Caldwell. Beth’s speech was inspiring, devastating but most of all, from the heart. Those laying down were quietly sobbing.

I then introduced CJ Corneilousen James, Co-founder, President and Director of Advocacy of METAvivor. CJ spoke of METAvivor’s mission and why it’s so important to advocate for more research funding for Metastatic Disease of all cancers.

Then we died.

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Paige Rosllio read our eulogy just as she did in Philadelphia. There was a moment of silence and then we all sang “The Circle Will Be Unbroken”. Paige rang a bell 113 times for the number of people that would die that day and every day while there is no cure. After thanking everyone for coming, the Parks Department and the District of Columbia we came together to hug it out.

It truly felt like an historic event. All of us coming together for a cause we all feel so passionately about and making it happen was electrifying.

There were meetings with lawmakers on the hill that afternoon. They are going on the rear of the week.  Those still in DC really feel they are getting thru to the lawmakers that can make this change everyone needs. Asking for 30% of funds going to Metastatic disease is NOT unreasonable.  It will make a huge impact.

There will be more Die-in’s going forward. We will keep making noise and speaking our truth until we are heard and the changes we need are made. We won’t stop. We can’t stop.

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If you’d like to keep on top of what’s happening with MetUp, please follow their website: metup.org, or their Facebook page