Email Notification

If you want to try to "follow by email," try the email subscribe box at the very bottom of this blog. It's been temperamental - but if it works, you'll get an email from "BuzzFeed" asking you to confirm that you want to follow.

Friday, May 27, 2016

Forward ho!

Back from our weekend at Wild Canyon Games, and I was able to go "all out." I was tired at the end, but then we always are :-)

A quick update on what my medical oncologist said just before I headed over to Central Oregon for the Games. He agreed that though he's not a surgeon, it didn't seem to make a lot of sense to do surgery when there was nothing specific to aim for. He confirmed that radiation should take care of any cancer cells we can't see.

Next step - meet with Dr. P, the radiologist, on June 6 for a CT scan and simulation. I'll know more about what all that involves when I do it, and then we can start scheduling radiation treatments. I'm thinking June will be "radiation month" this year.

Tuesday, May 17, 2016

Clearing up some confusion

We met with the surgeon today - partly as a followup to last week's surgery, but also as an opportunity to get some clarity on what the tumor board said, and why what I was hearing from the nurse navigator seemed so different.

Everything is healing up much better than last time - hooray! Plus she had taken just a little bit of skin around the incision both for better healing and to have pathology done on it - and there was no trace of cancer - not that we were expecting any but it's good to check. She said it's ok to resume normal activities, and I should be able to start radiation in another 3 weeks.

We now feel like we understand much more what the tumor board was saying. For one thing, they had no conversation about the dratted spots, because they couldn't see them on the most recent MRI. We'll call that good news :-)

What Dr. D told us was that there are a couple of governing bodies in the area of breast cancer treatment which look at thousands of cases to come up with recommendations and "standards of care." Post surgery, you always want to hear that there were clear margins - that they got all of the tumor and just a little more besides. Over the years, the standard of what a margin is has changed. It used to be 5mm, then 2mm, then 1mm. Now it is "no ink." The tumor and surrounding tissue is rolled in a special ink so that the outer edges can be seen under a microscope. If the tumor doesn't touch the ink, you're "clear." The margin for the tumor was 2mm; the margin for the DCIS was .5mm (DCIS is not cancer but sometimes is pre-cancer. It was around the tumor and that's why she took out more than we might have originally thought - she knew it was "not quite right.")

So the debate was essentially between the docs who said, "Yep, that's right." and the ones saying, "I'd be happier with a bigger margin." Given that it was obvious she was going to have to go in and clean out the hematoma anyway, there were a lot of people saying, "Since you're going in anyway, take out more in the tumor area as a diagnostic procedure." But others were saying, "The reason we do radiation after lumpectomies is to deal with what we can't see. We're not seeing anything on the images, so the radiation will handle it just fine."

Part of my confusion and fear was that when Dr. D last told me about the tumor board findings, it was all new and surprising info. So when I called the nurse navigator to get some clarification, she was reporting to me the fact that a lot of docs were supporting the "since you're going in anyway" scenario.  But Dr. D was reading those docs as saying, "Well, we don't know for sure, but new and bigger margins are a way we could be sure." They weren't saying it as a "have to."

So I'm breathing easier. I'll meet with my oncologist on Thursday as (hopefully!) an extra confirmation that I can continue on with the plan we'd developed for radiation along with other tests and meds. I won't be able to post on the blog right after that because I'll be heading to Wild Canyon Games for the weekend, so I won't have time or, more crucially, internet access!

I know this is long already but I just have to add this in. A few years back, I had two friends going through kidney surgeries. The first one had been given an adorable "plush" kidney - a little pillow shaped like a kidney, so I got one for my second friend, Rick. When he heard of my diagnosis, guess what he ordered for me?
He actually ordered it months ago from an Etsy site, and the apologetic letter that came with it was hysterical. She said she was sorry for the delay in about as many ways as it's possible to apologize. So our new catch phrase in that group is, "I'm so sorry. I can't apologize enough for how sorry I am..."

Tuesday, May 10, 2016

Surgery #2

It was strange to be walking back into the Short Stay unit almost a month after my previous surgery. We had the same escort who took us back there, which added to the deja vu.

As promised, everything happened speedily. Here I am modeling the lovely paper hospital gown:

I like the purple color. But of course one friend noted the "bear paw" logo and wondered if Jon had bought me to a veterinary hospital. Another thing that's pretty jazzy about this ensemble is there are "pockets" built in which can be connected to an air hose that pumps in hot air (or cold air I guess, if that's what you want) and I made use of that after surgery. Mmmmm - toasty warm!

I'm also modeling a "bracelet" that keeps track of where I am in the hospital, just in case they lost track of me. I guess that's reassuring.

Both the surgeon and anesthesiologist came in and chatted with us beforehand. This time the anesthetic was what you get for a colonoscopy so there was no tube stuck down my throat and you come out of it more quickly and easily. They woke me up while I was still in the surgery (AFTER the procedure was done, thankfully!) and they didn't even have to take me to the recovery room. The woman who "drove" my wheelchair to the entrance when I was discharged commented a couple of times about how early I was getting out, as did the woman checking me out of Short Stay. Overachiever, that's me!

So back to "recovery mode." I just snoozed and watched TV yesterday, plus one business phone call. Today I took my time getting started on the day, then took my laptop out on the deck to catchup on email and a few things. It was a perfect spring day in Portland - mid 70s, clear blue sky, birds singing and swooping through the yard. Overall, I feel good - just occasional little aches.

I have to admit I was pretty shaken over the weekend. Going back in for surgery felt like a step backwards, and having the tumor board be split on their recommendation muddied the waters that have been relatively clear for me lately. Then my nurse navigator (my usual "go to" with any questions and a helper in setting next steps) was saying things about the tumor board which seemed different from what the surgeon told me, which was unsettling to say the least. I'm still sort of unnerved by that, but next week I'll be seeing both my surgeon and my oncologist, armed with a list of questions, as always!

Thursday, May 5, 2016

A byway on the detour...

One appointment with the surgeon - two big pieces of info to absorb.

Her first words to us were, "Well, you split the tumor board." When you're looking for clarity, that's pretty much the opposite of what you want to hear. I was (naively!) hoping that all the tumor board members would be in agreement. But on the other hand, it does affirm that it was a good move for her to take my case to that smart group of cancer professionals.

Basically, it's impossible to say for sure, based on the imaging (mammograms, ultrasounds and MRIs) that there is anything cancerous that can be surgically removed. So essentially one half of the group said, "Radiation is our tool to get rid of what we can't see, there are excellent success rates from that, so that's the course of action we recommend." The other half said, "You could go back in for diagnostic surgery to be sure." 

As I told the surgeon, my philosophy about is, "less is more." She agreed that there is such a thing as too much surgery. She also said it's good to think about for awhile - would I regret not doing the diagnostic surgery if cancer did recur? And she encouraged me to get a second opinion if I wanted. Jon and I are thinking it would be good to talk with our medical oncologist about it - see what his take is on it.

So that's one thing. The other is a hematoma, which is basically a collection of blood cells at the surgical site. It had seemed weird to me that the bruising and swelling hadn't changed for so long, and we had an appointment with her last week to see what was going on. She looked at it, said it was a hematoma, hopefully it would go down on its own and we'd look at it again in about a week (today). But after hearing about the dramatic "bloodletting" on Tuesday, and after checking it today, she scheduled me to come in early on Monday morning (moving all her other surgeries a half hour later) to just clean all that out and stitch me up again. It would eventually dissipate on its own, but would take a long time, and we need to get radiation treatments started. Also, she can't just aspirate it because though there are some "liquid" cells, there's some that are sort of jellied - blech!

So this isn't wildly scary - just not the norm (I'm special!) Dr. D explained how she always makes sure the site is "dry" before she starts stitching, by cauterizing all the incoming vessels, so it's hard to say why I have these blood cells that don't want to move along.

Whew! I'm sorta down about all this but I feel perfectly healthy in all other respects. You know what to do, prayer warriors! Thanks, thanks and ever thanks!

Wednesday, May 4, 2016

Waiting - not my favorite word

I had hoped to get radiation treatments set up today at the radiologist's office, but guess what? A bit more waiting is on the agenda instead.

I've been impatiently waiting for the bruising and swelling to go down, and it really hadn't seemed to change much in the last week and a half or so. But the swelling just went down in a dramatic way today. I was making my way to the shower this morning when Jon said, "You're bleeding!" I looked down at my feet and legs - didn't see anything. (Morning is not my brightest time.) "No, your front!" he said. The front of my nightgown was covered in blood, as if I was the victim of a a stabbing. Wow!

After the initial shock, and seeing that it was not bright red, I realized it's sort of good news. My surgeon had said that the swelling was old blood cells that hadn't gotten carried off yet, so for whatever reason during the night, a pathway through the top part of the incision opened up and a bunch of blood dissipated that way.

I did meet with the radiologist as scheduled, he assured me that it's all OK, but we'll need to wait (there's that word again!) a bit more until that's healed up. It's the right decision of course, but the scheduling part of my brain wants to get some dates on the calendar!

Thursday my surgeon meets with the tumor board and then we meet with her in the afternoon. I'd appreciate prayers that they discern a clear way forward about those dratted spots. Thanks!