Posted by: justenjoyhim | January 12, 2008

I’m at Nikki’s

Nate and I are having a ball.

We spent all day at the Magic Kingdom today. It was glorious.

I have an idea for an ad for Disney World that would never ever be accepted because, well . . . . some would just find it in bad taste:

“You’ve just received your cancer diagnosis. What are you going to do now?”

I’M GOING TO DISNEY WORLD!!

_____________________

OK, no fair doing this and not updating with medical news when I have some.

I did get a chance to talk with the oncologist on Fri. morning before we left. The scoop is this: the cancer is not in the skin so apparently it’s not inflammatory breast cancer but “regular” breast cancer as I understand these things. That’s the good news.

OK, now there’s no need to get angry with any of my doctors, except the first surgeon who was a butthead. He was the one who made the huge assumption that this was Inflammatory Breast Cancer (IBC). The oncologist did say that my breast didn’t have all the hallmarks of (IBC) but it had enough of them that she was, until/unless shown otherwise, treating it like IBC, thinking it was better to be aggressive and not let the cancer spread. The second surgeon, Dr. Nice, must be a great diagnostician too, because he said that it was questionable whether it was IBC — that it wasn’t a “cut and dried” IBC — but by that time, I had convinced myself that it was.

At any rate . . . . .

The bad news is that there are spots on the liver — two 1″ spots that need to be biopsied. So the chemotherapy is being delayed until I can have a liver biopsy done. I had been focusing on the small spots on the lungs when I wrote previously. But this all does confuse me quite a bit.

This has, for sure, been a rollercoaster ride. I honestly don’t know what the next step will be because it depends on the results from the liver biopsy. Needless to say, there will be no chemotherapy on Tues. They need to see what’s going on with the spots in the liver. If those are cancer, then the oncologist will be changing the chemo. I think it will still be chemo first, but I’m not sure.

Honestly, all I can do now is give it over to God, pray, and see what happens with the results.

And keep enjoying myself here for another day which is exactly what I’m doing.

Coming here is the best medicine I could have been prescribed right before things get really tough.

Thank you so much, everyone, for all of your comments and kind thoughts.
_____________________

More when I get back.

Responses

Have a fabulous time in Disneyland. Congratulations on not having IBC. Silver linings, right?

What a ride. How horrible to just take you so thoughtlessly to that really scary place.

uggggh.

I am so glad to hear the good news.

So glad you’re having a good time in Disney. Hope it’s a wonderful experience for the whole family.

Sorry that the whole cancer ride is going to be a confusing roller coaster of emotions and expectations. I have no advice to offer, other than it sounds like you have a great group of people that love you and want to help you.

So glad you and Nate are enjoying yourselves.
The not-IBC news is quite good news, isn’t it? We’ll be waiting with you for your liver biopsy results.
Judy, we love you here at Chez Bloom and we’re all (even the nonblog readers) pulling for you, Frank and Nate.

Disneyland sounds like a wonderful prescription right now. Hope you get good answers. Take care.

So glad that you’re having a good time! And the non-IBC sounds a lot better than IBC.

Can’t wait to hear more about your trip!

That IS good news about not having IBC. Sending good energy to your liver!!

Holy crap, could they make it more confusing and difficult for you? On the other hand, I’m really glad to hear this isn’t IBC! You’ve still got many challenges ahead, but at least IBC isn’t one of them.

I’m so, so glad you guys are enjoying DisneyWorld - have a wonderful time, and catch us up when you’re back!

Hugs!

Thank god it’s not IBC! I know you still have a tough road ahead, but that really IS good news. Can’t wait to hear more about DisneyWorld.

Oh Judy. All of this overwhelms my senses and I can’t really make heads or tails of what you’re saying. But, I’m praying all the same. I think God gets what I’m praying. Have fun down there! :)

I’m so glad you’re having fun and that you have a ‘better’ breast cancer Judy. And I love that you haven’t lost your sense of humor. How wonderful to be at Nikki’s too!

Tina

Sending you lots of love and hugs from snowy New Hampshire tonight. I’m glad you guys had a wonderful time at Disney :)

Thinking of you with Nate, and Mickey Mouse!! You just keep up the Disney therapy, and have a splendid time!!

Waiting for all the answers is so hard… but soon, you will have them, and your doctors will have a plan of attack, so you can beat that cancer, Judy.

The fact that they have concluded it is not IBC is a big step forward. Big.

lots of love– CGF xo

I’m SO glad to hear it isn’t IBC. That must have been so scary.
Sorry about the other worries though - it’s a rollercoaster ride, that’s for sure.
Good thoughts are winging your way :)

Judy,
Thought of you, Nate and Frank all weekend. Was hoping you and Nate had a wonderful, splendiferous time together — that Nate was abeyond elated — and that Frank’s weekend on his own was, well, ok. So much to think about and deal with for all of you.

That said, it’s awesome news about no IBC, and well, just keep plugging along, embracing all the love around you and focusing ahead. And kick the hell out of anything else.

Good vibes from Joisey continue.

Not sure my comment was clear re: Frank. When I said “OK,” I meant that being without his family during this time, that this weekend on his own with all the things to think about, wasn’t too bad. Hope that’s clear. :)

Have a lovely, lovely time at Disney. I’m glad you guys have this time together! What fun. We’ve planned a beach vacation for when I’m done with radiation … suggest you start planting landmarks to enjoy in your future too … it makes it easier to go through treatment when you have specifics to look forward to.

I am SO glad it’s not IBC for you. Rough news about the liver and lungs. Hang in there, Judy. We’re praying for you too.

Judy - GREAT news on the non-IBC diagnosis. As for the other, well, we can only pray.

Can you go into a bit more detail/description of your lump? Did it show on mammogram? Was it an actual lump or just a heaviness/mass? Was your breast larger than the other? Inverted/flat nipple?

I ask all of this because I had no skin involvement either. I’m sure you’ve hear the “there doesn’t have to be a lump” lesson. Well, there doesn’t HAVE to be skin involvement either. My gosh, I hate being a buzz-kill!!! I’d just rather ask the hard questions now and get the right answers and, consequently, the right treatment.

I was in total denial about having IBC when I was diagnosed. I knew just enough about it to know how deadly it was and that I certainly didn’t want my breast cancer to be THAT kind. So I refused to accept my oncologists diagnosis of IBC (she readily admited she had no pathological evidence of IBC but was certain that’s what I had). Well, the day before I began chemo, there was the “evidence” that had been lacking prior. My entire breast was pink. It wasn’t red or hot or orange-peely. Just pink. But it never had been before. It got pinker for the next 3 days beyond chemo then faded. That was the extent of my skin involvement. They had never biopsied my skin so we never had a definative diagnosis there. By the time I had my mastectomy after 8 rounds of chemo, of course, my skin tested negative for any cancer.

Dear, I certainly do not mean to add to your worries. I do not think to second-guess your doctors. However, IBC presents absolutely atypically to traditional breast cancers. If there was enough evidence to think it might be IBC then something is up. Certainly it bears a second look or at least more questions.

On the other hand, if they are not going to change their course of treatment then I guess what they call it wouldn’t matter. I’ll pray for the best for the biopsies. When will they be?

Oh my Stella — that was my and Frank’s interpretation. Hmmmm.

I guess we’ll really have to wait for the oncologist to tell us what’s up with everything, after the next biopsy.

Hang in there, Judy. The testing and the waiting is probably the hardest part. So much unknown.

I remember my biopsies like they were yesterday … the surgeon kept poking at my breast, determined to get an inflammed region, because she was worried that she would miss it. Of course then the results took all of 3 hours to come back since there was so much cancer in the skin. Clearly, not your case!

My point is, hang in there, play with your little boy, and Just Enjoy Him. Excellent words to live by.

Thinking of you!!!!

Thanks for sharing

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