Friday, October 30, 2015

Check Out

On the wall in one of my oncologist's exam rooms, near the door, there is a sign that says, "Check Out."  

This is not the real sign

It may have been there all these years and I never noticed. Maybe I've never been in that exam room before. I'm not sure what it is telling me - is it reminding me to check out with the doctor's assistant before I leave?  Is it a reminder for the physician?  Perhaps that room was used for something else before it was an exam room.  The signage location makes no sense - stuck on the wall near the right side of the door where it can't be seen if the door is open.

Seeing a sign like that when you get bad news like I did is kind of like hearing the music to Jaws playing in your head when you go to the beach.  Ominous.

I wanted to take a photo for you all, but somehow, pulling out a phone to photograph a sign when your physician is sharing that cancer has exploded throughout your abdomen seems.....rude.

Perhaps even a little checked out.

I went for my usual therapy on Wednesday and asked for a copy of my latest PET results before I saw the doctor. Although he had called me to explain it, I was unpleasantly surprised by what I read, which was worse than I had anticipated.

I also realized I needed an anatomy refresher.  When my doctor called me with the news, he had told me that the cancer was in the abdomen, including the porta hepatis, which I thought was actually inside the liver. Well, radiologists don't seem to consider the porta heptatis as part of the liver tissue (or parenchyma, as they would say) as the report says, "no definitive metabolic evidence of recurrent hepatic metastatic disease."  The main areas of involvement seem to be between the stomach and liver; the porta hepatis is the gateway area that the veins, ducts and artery flows through to get to the liver. I also had to look up the other places cancer has spread:  the gastrohepatic, portacaval, and left periaortic regions.

Technically, "a 1.5x1.11 cm gastropheptac node, multiple adjacent/confluent upper left periaortic nodes, multiple-ill-defined nodes in the porta hepatis and portacaval regions" all with SUVs of 6.0.

I must have missed that day in med school.

Cancer is also in the subpectoral and axillary nodes, areas with which I am familiar.  It seems Machiavellian to now have cancer in my axillary nodes so many years after the original diagnosis. I remember clearly my old breast surgeon, Rockstar Raja, being elated that my nodes were clean despite extensive disease in the breast.

Devious joke, Mr. Cancer.   You got me.

Apparently, there is also disease in my left lung - four menacing, tiny lesions.  There are multiple affected areas in my upper abdomen,  far too many to list.  It's considered "moderately extensive" metastatic disease, an oxymoron if I ever heard one.  Only in medicine...

Well, shoot.

My liver?  Clean as a whistle.  A whistle which has been kept in a pocket, used and is covered with lint and dried spit.  That kind of clean.

So the plan is to get me on TDM-1, aka Kadcyla, as soon as possible.  "Within the week" my oncologist said, alarmingly. I'm not sure insurance companies do "within the week" though.

Oddly enough, I had a reaction to my old friends, Herceptin, Perjeta and Zometa.  I sat, happily hooked up to the drip,  watching the nurses swear at a new EHR system they are implementing.  As the Zometa started, my back started aching intensely and terribly. It felt as if a rubber band was wrapped around my intestines, and was being tightened.  The pain spread to the area that has been hurting all along -  my side, my left flank.  It was quite strange.   I've been on these drugs for years.   Having a reaction now would be bizarre, to say the least. But the pain intensified until I couldn't take it anymore, and I reached up and turned off the drip.  My nurse gave me some Toredol. I had some pain meds in my purse that I also took, which barely helped.  My nurse even thought I should go to the hospital but I nixed that idea, as I always will.  I'd rather suffer at home than be pain-free in a hospital.

Two hours later,  I was fine.

Mysteries.

If you are a newbie to disease reading this, and if you think that there is clarity in medicine, I smile at your innocence, charmed like a new mother seeing the world through her child's eyes.   In medicine, there are often more questions than answers.  No matter how sophisticated the machine or brilliant the doctor, sometimes, the unknown reigns supreme.

As an example, even with all the cancer in my body, nobody can figure out why I've been in so much pain or can't eat.  (I am now down to 90 pounds).  Sometimes, there are no obvious answers, and sometimes, people in medicine can't see the forest for the trees.

You know what I think?  Cancer hurts.

Cancer effing hurts, even if it's not technically impinging on something or interfering with mechanics.   It just does.

So another appointment over and another goal set:  I told my oncologist that my oldest son was getting married in May, and I want to live to be there.  As I stated my desire, I looked over his shoulder at the check out sign, and thought "not yet, buddy.

Not yet."







Speaking of checking out, is this a good time to remind you to start your Amazon shopping from the box on my page? Check out the right side, and click.    If you start on my page, anything you put in your cart and check out during that trip will net me a small amount.  With the holidays coming, and a new insurance plan with a $5,000 deductible, I am going to need all the help I can get.  Thank you.










13 comments:

  1. Couldn't you have posted a little disclaimer under all that crappy news, saying, "This is not the real news. Haha, just kidding! I'm really fine." Although I want to ask why, I won't. I won't make a comment about life being unfair, because we learned that long ago (and have had many refresher courses along the way). I will push that to the side and instead I will boost you up with resilience, strength and hope.

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  2. Ann, you inspire me..you really do. How absolutely sucky this disease is. Thank you for your brutal honesty. I was at my onc appointment on Wednesday and I asked if possibly these horrific nose sores that I have been ensuring since the beginning of September might be related to my Herceptin only treatment. She said well, Herceptin doesn't usually cause many side effects, but let's look it up...Wait, what? Aren't you supposed to be an expert in this? And now you're looking the side effects up on line? I can do that!! Anyway, sure enough, it was there, but she said only 2% experience this....well I guess I'm part of the 2%...I just can't wrap my head around how little even our own specialists even know.. Or how much they just assume . I pray for May for you..let the universe give you that..namaste

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  3. Ann, you inspire me..you really do. How absolutely sucky this disease is. Thank you for your brutal honesty. I was at my onc appointment on Wednesday and I asked if possibly these horrific nose sores that I have been ensuring since the beginning of September might be related to my Herceptin only treatment. She said well, Herceptin doesn't usually cause many side effects, but let's look it up...Wait, what? Aren't you supposed to be an expert in this? And now you're looking the side effects up on line? I can do that!! Anyway, sure enough, it was there, but she said only 2% experience this....well I guess I'm part of the 2%...I just can't wrap my head around how little even our own specialists even know.. Or how much they just assume . I pray for May for you..let the universe give you that..namaste

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  4. LOVE! You are amazing and I feel for you always girl!
    This sucks.

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  5. You have defied the odds so many times, just another juncture in the road for your followers to take solace in. Keep up the good fight for us ll. Love you!!!

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  6. I hate reading that your cancer has progressed. I also hate that you have so much pain and such difficulty eating. And yes, that sign... I am thinking about you, Ann. Thank you for the update.

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  7. Aw, Ann. I am sorry to read this, but if anyone is going to have the last laugh, I'm betting on YOU, sistah.

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  8. That's sad news. I will pray kadcyla works for you. It's my back up. There's also lapatinib and capecetibine........you WILL be there dancing at the wedding. Lots of love, fellow metster

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  9. Kadcyla has been easier than I thought it would be!!! You are going to do great and you will be tearing up that dance floor at your sons wedding! Xo

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  10. Kadcyla has been easier than I thought it would be!!! You are going to do great and you will be tearing up that dance floor at your sons wedding! Xo

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  11. I am thinking about you . No checking out . There are things to do.
    Hugs.

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  12. Not yet!!! Congratulations on the upcoming wedding in your family!

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  13. Hi Ann,

    I'm not HER2+, but I've mets in many of the same regions you do. Please get in touch. I know more about ascites and implanted drains than many medical professionals. :)

    Sorry you need to deal with this too - it's hard, scary and annoying all at once.

    warm wishes, Stephanie https://www.mylifeline.org/StephanieSugars/updates

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