losing weight

As The Stomach Turns

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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…..

The Numbers are Not in My Favor

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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. 😉

A New Chapter

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In a previous post I mentioned that my Oncologist suggested I take a break from the Exemestane I’ve been taking since my diagnosis.  I had been complaining about my increasing weight and my inability to lose any. That was in June.

Fast forward to today and I’m now down 17lbs and I’m walking a half mile to a mile almost every day. In fact, this week I can happily say I walked about 7.5 miles in total.  That may not seem excessive to some but the bone and joint pain I was experiencing on the Exemestane was crippling. It not only affected me physically but it affected my personal life because it made me cranky. When you don’t feel good you can’t be the way other people expect you to. I’m not a person that can stomp down the pain, frustration and exhaustion and put on a happy face. This isn’t Hollywood and I’m not an actress.

Physically, I feel really good. I do have some pain in my hips but the Gabapinten I’m taking helps dull the ache. I’m starting to feel lighter…finally. I still have quite a ways to go but I’m making progress and that only makes me want to continue to lose the weight and keep walking.

I’ve met some really nice people on my walks too!  Mostly, folks with dogs that want to male friends with Bella and others that just feel like talking beyond a passing ‘Hello’.

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The other morning, while Bella was being curious and sniffing what I assume to be another dog that had been by, an energetic older women approaching me yelled out, “We are wearing the same colors.”  And we were. Right down to our white sneakers. She stopped and commented on Bella and then we walked together for the next .69 miles. She told me about her children and even her estranged relationship with her mother.

I told her about my diagnosis and the story of how I found out. I explained why I was walking and my desire to get my ‘pre-cancer’ body back. She was sweet and thankfully avoided all battle language but she did say she would put me on her church’s prayer list and that for the next 2 weeks I’d be prayed for round the clock.

My goal is to be at my desired weight by October. Before it gets too cold to go walking and the snow flies.

When I see my Oncologist again in September, I plan on telling her that I will not be going back on Exemestane or any other Aromatase Inhibitor. It may seem like a foolish decision but my quality of life is more important to me than living with the daily pain and fatigue.

I am putting my cancer away. I’m done with it. Everyone says I’m doing great and should enjoy life and that’s exactly what I plan on doing. Although I don’t exactly know what that will look like for me, I am eager to see how it all unfolds.

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