Done!

Today was my final radiation treatment. Woo hoo!!!

I knew they had a little "ring the bell" ceremony at the treatment center for "finishers" - but I was surprised by the confetti and cheers of the technicians - plus Jon, of course!

And as you can see, they gave me a certificate which said I completed the course of radiation therapy "with the highest degree of courage, determination, and good nature." (Of course I'm the only one they say that to - ha!)

I got teary, which sort of surprised me. I guess I've been in my head more, thinking, "Only a few more days of this and then it's off my schedule" but today the emotional reality hit. What a gift to have this treatment done and now be on my way.

From here on out, it's just checkups to make sure all the "C" stuff is staying away. 

HUGE THANKS to you for your love, prayers, encouragement, support, listening ears and helping hands. It's been a team effort and I'm so, so grateful.

Loving you,

Jude

Past the Halfway Mark

Really nothing to report except that I've now had over half of the radiation treatments. No real side effects yet - they keep telling me those are cumulative and more likely to show up during this "second half," but we'll see.

The finish line is in sight :-) I'm still so grateful for all of your faithful prayers and concerns. I've never felt alone in this.

Becoming Radiant!

I'm happy to report that there's not much to report other than that I've had 7 of 20 radiation treatments, and so far everything is super easy with no side effects.

Here's a picture of "the machine."

The appendages on the big silver ring rotate around while I'm lying on the "comfy" (not!) black plastic bed. On top is the one that delivers the radiation in short bursts with an accompanying beep - it takes less than 2 minutes. It rotates to one side and then about 180 degrees the other direction to zap me from both sides.

I don't know what the protuberance on the right does, and the one on the left (and the bottom one?) are X-ray imaging devices. I'll have to ask a few more questions.

So that's it! Have a great 4th of July weekend :-)

Having a "Rad" Birthday!

This year I'm celebrating my birthday by starting four weeks of radiation treatments. I've been saying I'm "celebrating life" that way. Some clever friends wished me a "rad" birthday, and others assured me that I'll be looking radiant. Ha!

Today's session was just a bit longer than it will usually be but even at that, it was quite short. Essentially I lie down on my back on a lovely hard plastic "bed" and stay still while a machine beeps and radiates. They had to do a couple of other extra things today but I think the treatment itself was only 4 minutes - super short!

Whatever side effects I might get are cumulative - possibles include some redness, some fatigue, etc. I'm "planning" on having minimal side effects - we'll see how that works out :-)

A memorable birthday indeed. THANKS so much to all who have sent birthday greetings my way. Warms my heart and makes me smile!!

All tatted up!

Got my first-ever tattoos today - but nothing fancy. Just little dots so the radiologists can always position me correctly for my upcoming radiation treatments.

Everything has been healing up WAY better than after the first surgery, so we're finally ready for this last phase. Today was a CT scan (they want to make sure where all my vital organs are so they don't hit those!), plus the tattoos and scheduling the first treatment, which will be on my birthday, June 21. A memorable B-day to be sure! Then I'll have a total of 20 treatments, on weekdays, so I'll be done in mid-July - which makes it possible for me to go on my annual Kenya mission trip with Kizimani - woo hoo! I've been thinking that I would probably be able to go, but wanted this final assurance before I started raising funds and booking my ticket.

Got to start celebrating my birthday tonight with some dear friends with a picnic up in the Rose Garden - perfect! Every bush was bursting with flowers and the smell was heavenly.

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.

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..."

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!

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!

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!

Confirmation

Appointment with Dr. A
When I got the good news about my 2% test result (see last blog post), I trumpeted it to the world, saying, "I'm not going to do chemo!" Cautious Jon said, "Well you haven't talked with your medical oncologist yet." True, I hadn't. But we did talk with him today, and even better than him saying, "Sure, that's your choice," he said, "No chemo for you!" Super great to have him say that so emphatically.

What gave him such confidence was that wonderful 2% number. There's another tool/study (SO many of them, and I'm grateful for every single one of them!) which looks at the tumor pathology and creates a PEPI score, which predicts the risk of breast cancer coming back. Dr. A said, "With this one, you don't want points." The cutoff to start accumulating points is anything above 2.7%, so since I have that lovely 2%, that gives me a grand total of zero points! Can't get better than that.

As is usual in our appointment with Dr. A, he threw a ton of info our way. In brief:

 - bone loss is a potential side effect of taking the anti-estrogen med, plus there are studies (more studies!) showing that since breast cancer tumor cells like to migrate to bones, treatments to forestall tumors there can significantly cut risks for cancer recurrence in the breast or in the bone or liver or kidney. Consequently, I'll be doing an IV treatment of Zometa every 6 months for the next 3 years. Plus he'll be checking my Vitamin D levels every time I go in - every 3 months. Obviously more doctor's appointments in my future! That's not even counting annual mammograms and MRIs.

 - there's also a blood tumor marker test he'll be doing. It's not yet "standard of care" but could give us a jump on diagnostics if some cancer decided to return. Quite honestly, I can't remember how often that will happen - perhaps it will be a blood test when I have an appointment with him every 3 months.

Patient Education Summit
A friend and I went to a Patient Education Summit for most of the day last Saturday, which was very good. There was a wide variety of speakers, from doctors to insurance reps to naturopaths to cancer survivors (I'm "supposed" to be calling myself that - but it feels a bit, I don't know, overly dramatic for my situation). I learned a lot, was sometimes laughing and sometimes teary, and time went by quickly. A few nuggets from that:

 - from a doctor - "...and there's the patients who consult Dr. Google..."

 - Suleika Jaouad, the keynote speaker, was powerful. She writes a column for the NY Times called, "Life, Interrupted" which she started while in a bone marrow transplant unit, undergoing some pretty drastic treatments.

 - a wife's response when her husband told her of his Stage 4 diagnosis - "You're in deep tapioca!"

- April 16th is National Health Care Decisions Day. Oh my. We really do have an "official day" for everything now, don't we?

Status Report
Overall I'm feeling very good. Still impatiently waiting for the final bruising and swelling to go down, but pretty much back to normal in every other respect.

Next week:
    Monday - MRI (not the icky needle one)
    Wednesday - meet with radiology team for "simulation" (get me set up for treatments)
    Thursday - Dr D, my surgeon, shows my reports and images to the tumor board to get input about those dratted spots that we still haven't gotten final consensus on
    Thursday - meet with Dr. D to see what the tumor board recommends

Grateful
It's a key word for me these days. Hearing some people's stories at the Summit - "I've had 2 major surgeries, 7 hospitalizations, 57 chemo infusions, 28 radiation treatments, 4 day surgeries, 7 procedures, 5 ER visits, 21 prescriptions and 4 specialists" (this from the woman who organized the conference) - confirms that though I've been experiencing "the big C," I've only dipped my little toe in that ocean.

Another example. A couple of the speakers at the Summit said that when they were diagnosed, some friends they thought would be supportive had backed away, while other people they hadn't felt as close to really stepped into the fray. I couldn't relate to that at all. Every single one of you have jumped into this "detour" with me in a big way. I'm overwhelmed with your love and care. And so grateful.

2% - A Wonderful Number

Just got the results of the test we were waiting for. And the number 2% means that I've decided not to have chemo. Big sigh of relief and lots of joy!

A numerical recap, if you want more details. Among the many test results we received about the biopsy, one was the fact that the tumor was 100% estrogen-receptor positive; in other words, it feeds on estrogen. Just one week after the biopsy, Dr. J (the surgeon who is out of our network) saw that result and said, "Let's start you on anti-estrogen meds now." That's not the norm, but it made a lot of sense and my medical oncologist said, "Sure. Go for it."

Another result was the the Oncotype DX test which is a fairly recent test that oncologists now use to help determine whether or not to do chemo. This is the test where I fell in the hazy middle ground. 17 and below is "no chemo for you!" and 31 and above is, "Yep, you gotta do it!" My number was 21 - just enough to say, "Well, it could be helpful - we don't know for sure." Stats are "13% chance of recurrence if you don't do chemo; 9% chance if you do." Your choice.

As we talked about those numbers with Dr. A, the medical oncologist, I confessed my indecision, and my preference for no chemo. Then I asked a "what if?" question. One other test was the "proliferation rate" (division rate) of the tumor cells. From the biopsy, 24% of the cells were dividing, which is a high rate. It was the worst number of all my results. But the cells were 100% receptive to estrogen, which I was cutting out of their diet, so what if that rate went down between the biopsy report and the pathology report after surgery? Would that be helpful information with which to make my decision? Dr. A agreed.

For the rate to change from 24% to 2% is more change than I even dreamed of. I'm realizing now that I hadn't ever put a number on it, but I think I was vaguely feeling that if it moved down into the teens, that would seem pretty positive. So a low single digit is amazing!!

Now the organizing part of my brain wants to kick into gear and get radiation scheduled so I can get other things planned. I've got Wild Canyon Games coming up in about a month, Memorial Day Weekend, a job in Boise on June 11, my brother's wedding on June 18 and of course Kenya in August. From our previous conversation with the radiologist, I think we'll be able to work that all out.

You can still keep praying. I do have an MRI coming up and then my surgeon is going to take all my records to a tumor board to see what they think about those "probably-benign-but-we-don't-know-for-sure spots." Hopefully those will be fading away too without their precious estrogen...

The Waiting Game

We met with the surgeon today and got the pathology report.  Nothing scary but nothing definitive either.

 - the chunk she took out was bigger than I thought it would be - about 4 x 4 x 3 cm.

 - besides the type of cancer that we knew I had from the biopsy (invasive or infiltrating ductal carcinoma) they also found DCIS - ductal carcinoma in situ - which means cancer inside a duct. Hmm - I'm still learning about all this. I think carcinomas can start inside ducts, and some break out but some don't, so there is debate as to whether to call them "pre-cancer" or "non-invasive," and about how aggressively to treat them. Will have to learn more.

 - because of the "new" cancer they found in the tumor, I'll go in for another MRI (NOT the needle biopsy one, thank goodness!!!!). But because of all the bruising I've experienced (not what she usually sees but our family has always bruised easily and colorfully), we need to wait a few weeks for that to get back to normal.

 - once we have the MRI results, the surgeon will take my case to a consulting group (comprised of oncologists, surgeons, radiologists, etc.) and see what that team recommends about next steps. Should we go after those "spots" that radiologists have different opinions about? Will more DCIS show up on the MRI and therefore should be taken out?

 - though I had asked, and therefore the surgeon's office had asked, for the pathologists to report on division (or proliferation) rate, that was not included in this report so we have to wait for that result. This is the number that we are wanting to go down, which we'll use to help us about the chemo decision.

 - I was going to see my oncologist next week but now need to wait until the following week, when more test results are back.

Overall, I'm feeling fine. I'm back on a (gentle) work schedule, and went to exercise class last night - just doing stretching, non-intensive exercises. Nothing bouncy, thank you! Heading back onto that "normal" path as much as possible.

The words "thank you" seem so small compared to the outpourings of love and concern and prayers and treats - but they are heartfelt. Thank YOU - you are a treasure.

Takin' it easy

I'm out on the deck, in the gentle sunshine and grateful for so many things. I'm off the hard meds, not experiencing much pain (even though my breast is one giant purple bruise - lovely!) and a little tired but not overly so.

Surgery day went pretty well. As we were walking out the door, the hospital called and said that my surgery time was moved up. Nice, but I was also secretly doubtful how much earlier it would really be. Checked in at 9am, was taken right back to the short stay area, and did all that basic prep work of hospital gown (sort of a breakaway paper thing, with places for warm or cooling packs), IV, answering questions, etc.

They wheel-chaired me down to radiology so they could put in the wire, blue dye and radioactive material. That radiologist also wanted to look at another "spot" to see if they should biopsy it during surgery but after lots of ultrasound time she decided it just wasn't definitive enough to warrant that.

Then off to mammography where they were to get images of exactly where the wire was (right through the tumor). This part was the longest wait and I think a bit of a blip since it seemed like all the other departments were trying to get me to surgery "earlier" but I sat and waited there for 20 minutes. Finally someone came to do the mammogram and then I waited some more.

By the time I got back to short stay, the surgeon had been there already, assuming I'd be there. The nurse gave me final prep, the anesthesiologist came, and the surgeon came back so we could actually talk. Then off to the OR, just a few minutes before what my original time had been. Of course I don't remember much of that room since after I scooted over to the operating table, they gave me the final knockout drugs.

Jon says the operation was pretty close to the expected 90 minutes. When I woke up, I was super dopey, but the nurses were very attentive and I got ice and water - very welcome indeed.  Some time there, some time back in short stay, and then home - hooray!

The rest of the evening was mostly dozing, a bit of dinner and dozing and sleeping. Slept on the couch with the cat and pretty much slept through the night. And now, as the title of the post says, I'm taking it easy.

Next step is waiting for the pathology report - either end of this week or early next week. Initial report was that the sentinel nodes are clear, so that's good news; means the cancer hasn't traveled anywhere else.

All for now! Thanks so much for standing with me in this :-)

home

The surgery went as expected. Judy's home now, still a bit dopey.

Thanks for your encouragement and prayers.

Jon

Say what..?!

So I’m in the thick of the ACES (American Copy Editors Society) conference on Thursday, having a great time learning stuff and meeting interesting people, when I get a phone call from the surgeon’s office. The message is that a radiologist at the hospital is raising questions about the (icky!) MRI biopsy which was done to check the other “spots” the original MRI showed. Essentially, that person is saying is they’re not 100% sure the biopsy needle hit the “spot.”  So maybe I want to do another test… Seriously!?!

My surgeon and the original radiologist feel confident with the results, and at this stage of the game, I don’t want to delay the surgery to remove the tumor any longer. This report rattled me, and I’m frustrated that they waited til the eleventh hour to pop up with this. My contact at the surgeon’s office confided that they were frustrated too.

So you can add to your list of prayers for me (already long I know!) that AFTER the surgery there will be a clear path as to what the followup should be, and that for now, I can let it go. [cue song lyrics here :-) ]

Prepping for surgery

I talked with a pre-surgery nurse today and watched a couple of their "this is what to expect" videos,  Here's what I know so far:

Night before - take a shower / use clean washcloth and towel / wear clean pjs in a clean sheets bed.

No food or drink after midnight. Not usually a real biggie for me, but one side effect of the anti-estrogen med I'm taking is that it makes me thirsty, so my current norm is to get a drink of water 1/2 way through the night. I have a feeling I'll be REALLY thirsty on surgery day.

April 4 - Surgery Day!
Take another shower / use clean washcloth and towel / wear clean clothes.

9:00am - check in at St. Vincent's Hospital.

All times after this are ESTIMATES, they are careful to keep emphasizing.

Sometime after check-in - go back to short stay unit / Jon can come with

10:30ish - get a wire put into the tumor (since the tumor isn't super large, the wire (a teeny thing) is a clear indicator of exactly where the tumor is). Don't know if Jon comes along - sorta thinking "not."

11:00ish -get nuclear dye put in - this shows which lymph node the tumor drains into; then during surgery, the surgeon will remove the first node the dye reaches (the sentinel node) and send it to be tested. It's a big improvement from the "olden days" when they'd just remove ALL the lymph nodes. Again, don't know if Jon "gets" to come along for this. Back to short stay (with Jon) to wait for...

1:00 - surgery scheduled - they tell you to bring a book and that there's a TV in the room. I anticipate lots of waiting.

Length of surgery - anywhere from 90 minutes to 2 hours - "ish."

Recovery room and then home. Lots of water please!!

Turning crabbiness into laughter...

Well, that didn't take long.

The day after I got the re-scheduling of the surgery news, I was treated to brunch by a friend who beat breast cancer 17 years ago. I told her that I'm doing some freelance proofreading and copyediting, and she told me of woman she knows who is also doing that, and who is coming to Portland next week for a national copy editors conference.

Cue the light bulb moment!

I had signed up for that conference in January but then had to back out because of my surgery date on March 30th - the conference starts on the 31st. But this new surgery date means I can go to the 3 day conference next week. They were quick to let me re-apply at my initial "early bird" rate and now I'm all set to go. I was just laughing the whole rest of the day.

Quite the lesson I'm getting in trusting God's timing...

Surgery Date Changed - and other timing tales...

Got the word from the surgeon's office today that we have to move the surgery date to Monday, April 4th.  It's not that much longer to wait, but I have to admit it makes me a bit crabby. The reason for the change is that the Tanasbourne Surgery Center is "out of network" for our insurance plan, so I'll be having it at St. Vincent's Hospital instead. It will still be on an outpatient basis and I report there at 9:00am.

It just seems so crazy. I'm sure that the costs of doing it at the surgery center instead of the hospital would be significantly less for the insurance company, plus it's run by Providence - the system that both my surgeon and St. Vincent's are a part of. So why...? Who knows.

But there's some amazing timing things that have taken place already so I'm trying to remember those and "possess my soul in patience."

When I was first diagnosed, I was sorting out all the potential treatments and schedules. Carol, my boss at Graceworks, was completely understanding and flexible. I was scheduled for a 2 day workshop with her in Ohio (which took place last week) and I wasn't sure if I could/should do it. I hoped to, but didn't know if it was medically "ok" to wait til after that time (turns out it was) and didn't know if, by waiting, I might compromise my ability to be at my brother's wedding in Florida in June (learned that post-op treatments can flex around that date if need be).

In the meantime of course, Carol was working on backup plans. One trainer (Jen) was already booked for those dates, and the other (Rich) graciously said he would do it, but I knew he'd be giving up some commitments that are near and dear to his heart.

Then the booking for Jen got moved to another date so she was free to step in for the Ohio gig. Interesting. Should she do it instead? Carol said it was up to me. And it turned out that doing ultrasound and MRI to chase down the "spots" were going to take me pretty close to that workshop date anyway, so I said, "Yes, I'll do the Ohio workshop!"

Turns out it was such a good thing I did - for a completely unexpected reason. In my last post, I asked for prayer for one of our trainer's daughters. It was Jen's daughter, and because Jen was home and NOT in Ohio, she was able to shepherd her daughter through all the ER / hospital / "now what?" craziness that ensued for the next several days. Thankfully, her daughter's doing fine now. We are all so glad that Jen was able to be there with her.

But wait - there's more! I had hoped to do the Ohio workshop and then have surgery early this week.  But that didn't work because the surgeon is out of town. And we couldn't do it on next Monday either. Yep, I was crabby about it.

But.... Jen was scheduled to go to San Diego early this week to co-lead a 4-hour workshop and we realized it really didn't make sense for her to get on a plane to go across the country for that, when it would be just as easy for me to do it. And since I wasn't having surgery this week, why not? I just got home tonight from leading a workshop with Carol as part of the N3A conference - North American Airline Audit conference. Lots of different airlines represented - great people! And there was sunshine :-)

Yes, that's the Hotel Del Coronado. And no, the conference wasn't there. Wouldn't that be something!

So that's why I'm trying to be "non-crabby" with this most recent "push out" of the date. Maybe there will be more timing tales to come...

"Spots" are benign!

Literally moments after we had touched down in Columbus, Ohio, and I had taken my phone off airplane mode, I got a call from the radiologist saying that the spots they checked are benign. GREAT news! That means I'll just have a lumpectomy, which can be done as day surgery - March 30.

Super grateful.

A bonus of this trip was that I got to have lunch with Ted and Jeannine Nordlund  in the Minneapolis airport. Funny thing is that there are ZERO restaurants outside of security. So they brought in a lunch and we had a grand old time :-)

Praying friends - please lift up Carson, the daughter of one of our Graceworks' trainers. She fainted several times yesterday and today, including at the ER, and though they are sending her home, my understanding is that they haven't truly isolated the cause.

Two days of workshops here in Ohio - looking forward to it!

And more waiting, with a few appointments sprinkled in...

Three appointments this week. I'd hoped to have results from the MRI to report on today, but looks like it will be early next week before we get those.

I had an MRI-guided biopsy this week, which was quite the opposite of fun. If you don't want more details about that, skip to the next paragraph (and I don't blame you!) I had to lie face down with my arms stretched out above my head, staying very still for over an hour, while I was shuttled in and out of the MRI machine. I'm not claustrophobic, and had my eyes closed most of the time, but after 20 minutes or so, my shoulders started to ache. "Don't move," they kept telling me, but oh, how I wanted to. The basic plan is that they figure out the location of the "spot" they want to biopsy by doing the MRI, then shuttle you out to numb that area (like at a dentist's office), then in again to check something (I don't remember what that was), then out to have the biopsy done. It shouldn't hurt, right? 'Cause they put the numbing stuff in, right? Somehow he hit a nerve on the last "poke" and I definitely moved ;-( Ow, ow, ow!!! Yelps and tears. Then he put in a tiny titanium marker. Then back in to the machine see that it was in the right spot. Then finally DONE! Except for a quick mammogram to see the marker on those films. While I was waiting to hear that I was really done for the day, I texted Jon - "Please find a good ice cream place on the way home - I need a treat!"

We met with the surgeon on Tuesday and today with a plastic surgeon, whose services I hope I don't need. In both cases, we talked about what the surgery would be if the spots are benign (pretty simple lumpectomy) and if they aren't (essentially breast reduction surgery - a bit more complicated but not as much so as a mastectomy). Still aiming for surgery on the 30th, or maybe a day or two later if we have to go the other route.

So more waiting.

We did learn a couple of interesting facts about the anti-estrogen pills I'm taking:
   - the initial biopsy showed that 100% of the tumor cells reacted positively to estrogen, so that means 100% of them will react to not getting any more.
  - the medication doesn't "kill" them the way a chemo drug does, but it basically tells them, "Your job here is done," so they start the pre-programmed routine of "it's time to shut down now."

I'll be co-leading a presentation workshop in Ohio next week - gone from Monday through Thursday - and I'm looking forward to it. Nice to focus on something else :-) And no doctor's appointments - woo hoo!

Baby Steps

I keep getting great analogies from people about what this time in my life entails. Right now, it really does feel like we're taking baby steps as we head towards surgery and whatever lies after that...

Since the MRI showed a couple of "spots" which they think are benign but want to confirm, I had an ultrasound this week, which unfortunately was not ultra-helpful :-( They couldn't see the spots clearly enough to make a judgement call, so now I get to go in for an MRI biopsy next week. As I understand it, they use the MRI technology to guide them to exactly where those little "spots" are, and do biopsies of those.

Also next week, I have an appointment with my surgeon, and since the biopsy results won't be back by then, we'll talk about what the options are if the spots are benign, and if they aren't. And just to add to the fun, I'll have an appointment with a plastic surgeon, just in case that might be called for. I think I've had more doctor's visits in the last few weeks in the last 10 years!

Surgery is scheduled for March 30th and hopefully will be on an outpatient basis.

So current prayer requests are still the same:
Clear results from the MRI followup tests
Clear direction for chemo/no chemo decision

Grateful for you - my support and prayer team!!!

Next steps

First, a little more explanation as to why the negative result for the BRCA gene mutation is such good news. If you test positive, the recommended next steps are a double mastectomy, removal of ovaries, and yearly screenings thereafter for pancreatic cancer. You do all that because the percentages are so high for recurrence of breast cancer, and onset of ovarian or pancreatic cancer. SO grateful that those are not part of my journey.

We met with the medical oncologist (Dr. A) today and, as before, he gave us super clear, detailed info.

MRI results - they found two small "masses" which are predicted to be benign, but a followup ultrasound is recommended. If that doesn't clarify matters, there are one or two other MRI/Ultrasound/Biopsy tests they can do, and of course it's recommended that those are done before surgery.

Chemotherapy - as I indicated in an earlier blog, I fall in the hazy middle ground for the test they now  do (Oncotype DX) to help determine whether or not to do chemo. Percentages say that by continuing with the anti-horomone med I'm currently taking, my chances of cancer recurrence are about 13%. If I do chemo, my chances of recurrence are about 9% - only a 4% difference. But it can be an important 4% since if the recurrence is somewhere else in the body (bone/liver/lung/brain are most likely, in that order) it's not curable.

I'm torn. There's a lot of nasty side effects with chemo, most of which dissipate with time, but some occasionally don't. Plus the idea of putting that stuff into my body is just something I'd rather not do. On the other hand, lessening the chances of a recurrence sounds pretty good.

What we came up with for now is to wait for the pathology report after the surgery. I'm already taking the anti-hormone med, based on the suggestion from the surgeon not in our network, but most docs don't prescribe that til after surgery. Her experience is that if the post-op report comes back showing the cancer cells are dividing at a significantly lower rate than they were before, then we would know the drug is doing good work and chemo is likely not necessary. I get the sense that this isn't a typical suggestion by Dr. A, but he really respects that surgeon, and he agrees that it could be a helpful indicator one way or the other regarding chemo treatment for me. There's always about a 4 week waiting period between surgery and chemotherapy anyway, so at this point, I think I'll wait for those results.

Thankful for a "negative result" on the genetic test!
Thankful for super helpful medical team!
Thankful for super friends and family team!

Praying for:
Clear results from the MRI followup tests
Clear direction for chemo/no chemo decision

Negative result is positive news!

Got the results of the genetic test back today. Negative for the BRCA gene mutation.

So grateful. So relieved.

We meet with the medical oncologist on Friday. More info to absorb and decisions to make, I'm sure.

Thanks for your prayers.

A step at a time...

I decided on Surgeon #1. The choice was difficult only in that I think either would have been a good choice. But it feels good to have that figured out. It looks like surgery may be the week of March 28.

As part of this surgeon's team, I now have a Nurse Navigator who is super helpful in answering any big or small question, and in chasing down logistics. She has me scheduled this week with an MRI on Wednesday and an appointment with the medical oncologist on Friday. 

I'm frankly nervous about what the oncologist might say on Friday. The "Oncotype DX" test came back at 21 for me. This is the test which is a big piece of the decision whether chemo is warranted or not. As I understand it, under 17 would mean, "No chemo for you!" over 31 would mean, "Chemo for sure," and the hazy middle ground where I've landed is, well, hazy. I have a hunch that's what we'll be talking about on Friday.

Prayer requests:

   "Negative" for the BRCA genetic test

   MRI results that are clear and helpful (there can be false positives)

   No chemo needed - this decision might not get finalized til after surgery

I'm getting lots of great analogies from friends as to what this time in my life is like. "We're in a whiteout," comes from a hiking friend. We can only see a few steps ahead. So we take it one step at at time.

Grateful for you!

Waiting - and more info gleaned...

Hmmm - is the phrase "patiently waiting" an oxymoron? It is for me right now. I want answers now but evidently it takes some time to unravel genetic code. Ya think!? Isn't it amazing that such a thing is even possible?

We had a good appointment with a radiology oncologist today, and among a lot of other useful info he shared, the piece that is most logistically helpful right now is that there is some flexibility in how radiation and chemo appointments can be set up. As I look at possible mastectomy scenarios (keep praying for a negative BRCA report so that's not necessary!), I want to be sure I can be at my brother's wedding in June. The post-op treatments have timelines and waiting periods but the radiology doc (and later the PA for my medical oncologist) assured me that (of course!) working around big life events is not a new issue for them. We can make it work.

One question both Jon and I had was, "how does radiation work?" If it's going to get rid of cancer cells, why isn't it killing off good cells too? The radiology doc said that radiation "breaks" some DNA in cells but the cancer cells can't repair themselves as quickly and easily as normal cells can. Interesting!

Over the weekend I hope to finalize a decision about a surgeon, and then meet with some plastic surgeons next week. Again, I'm hoping their services won't be necessary but I'm hearing from medical advisors that it doesn't hurt at all to get all info possible beforehand.

And so we actively wait...

Surgeon #3 and Medical Oncololgist

Friday we met with two doctors, and learned still more information - some of it a bit sobering.

Surgeon #3 was great (really, every single person we've met so far, from the intake people to the nurses to the schedulers, has been super warm and helpful). In some ways, she didn't give us a lot of new info but it was helpful to meet her, and to solidify some of the details of what all the various tests and numbers mean.

We also liked the oncologist we met with. (I'm learning that all the docs involved with treating cancer are oncologists, so you have a surgical oncologist, a radiology oncologist, a medical oncologist, etc., etc., and that when you say "your oncologist" that means the medical oncologist.) The medical oncologist is the one who oversees all your treatment, and, as a few people have pointed out, is the one who is with you for the long haul - 5- 10 years or longer. As I posted earlier, it seems like this is the person you want to talk with first, rather than just the surgeon, so we were glad to have time with him.

Here's main new thing we learned from him.

He was very positive about the idea of genetic testing, not just because of screening for potential pancreatic cancer in the future, but also because of how it will help inform what type of surgery I undergo. I've been pretty much bouncing along thinking, "Oh, it will just be a lumpectomy and that's not a big deal," but if genetic testing shows positive for the BRCA1 or BRCA2 gene, then the chances of reoccurrence are at about 66%. Taking the anti-hormonal medication, which I've already started, reduces the chances to about 30%, but that's still not wonderful odds, so a double mastectomy reduces the chances to less than 5%.

That was a stunner. As I've looked back at my notes, I see that surgeon #2, who ordered the genetic testing, had said something along the lines of, "we might do the surgery differently" based on the test. But I did not hear that as starkly as the way the oncologist explained it.

I don't think everyone gets genetic testing done beforehand. But I have the double whammy in my family history of a mother who had breast cancer and her sister, my aunt, who died of pancreatic cancer at age 31.

Based on that information, it seems smartest to wait until that test is back - in about 4 weeks. By that time, we should also have information back about the other test they sent in which will help determine, no matter what kind of surgery I have, whether or not chemo is recommended.

So LOTS to pray about. A "not positive" test result for the BRCA genes sounds like a good prayer. Also, trust that God has this all in His Hands. Peace for my brain that wants to go down all sorts of different pathways. Wisdom as we keep sorting through all the possible paths to take.

We had a great Presidents' Day weekend on our now annual trek over to Black Butte in Central Oregon with the Harrels. Though we thought we'd be snowshoeing, you can see photos of why we hiked instead.

Our goal for the hike - Tamolitch Pool. Super clear, water looks very blue. Upstream of here, the McKenzie River goes underground for awhile and then re-emerges into this pool.

Surgeon #2

My brain is full of new information - and tomorrow we have two doctor's appointments. Good thing we get to go to Black Butte for the weekend for a welcome break!

This surgeon is the one who's been recommended by easily half of the people I've talked with. She's  very well-known and respected - and "out-of-network" for us (bummer!) She greeted me with a hug, and also gave me a hug as I left. Warm, smart and amazing.

It's hard to synthesize everything at this point. We're starting to learn some of the lingo and what might be on the path ahead. Some interesting things we learned today:

 - she suggested and we agreed that genetic testing would be helpful. Initially I thought, "Why bother? We don't have kids so..." But it turns out that the gene holding the marker for potential breast cancer (I may not be phrasing this exactly right) is the same gene for pancreatic cancer. And since my aunt died at age 31 with pancreatic cancer, this surgeon thinks it would be smart to know what my genes say so we could be more proactive about screening for that if need be.

 - she also recommends starting some hormonal therapy before surgery to see how the cancer cells respond. If, when they test the tumor after it's excised, they find that some of the cancer cells were killed off because of that, they know that any other cancer cells that may have "escaped" are going to respond in the same way. She's a pioneer in this treatment option and an oncology social worker I spoke to today (who just "happens" to be a long-time acquaintance of mine), said that for awhile, this surgeon was alone in recommending this, so it's not yet standard. It's an intriguing option and one I'll continue to explore.

 - this surgeon also recommended a test that would help us be more definitive as to whether chemo will be necessary or not. This is the piece of treatment options that, quite honestly, I'm hoping, hoping, hoping I don't have to do. Surgery - OK. Radiation - bring it on. Take hormonal meds for 5-10 years - I'm OK with that. Chemo - really, really rather not. So feel free to pray about that for me!

Friday we'll speak with surgeon #3 in the morning and then (minor miracle alert!) an oncologist in the afternoon. After I spoke with a nurse navigator (new term for me) for surgeon #1, she suggested we talk with an oncologist before surgery. (Jon and I have been wondering all along why that isn't the first person they recommend you talk with.) She told me, "Well, I'll try to get you in as soon as possible..." (subtext = this could be awhile). Five minutes later she called back, "This never happens! I went over to his office and he said he has an appointment open at 3:45 tomorrow." Woo hoo!

I might not have time to post again til Monday. Snow in Central Oregon is calling, plus relaxed time with friends. What a treat.

THANKS for walking the journey with me.

Surgeon #1

First I have to say I'm sorry the "notify me by email" gadget (Blogger's word, not mine) hasn't been working for most people. I've tried a fix of putting the sign-in at the bottom of this blog. Please let me know if it doesn't work for you, and we'll try, try again.


We saw the first surgeon today, and she was super helpful and informative. In brief:

 - I need to get an MRI before surgery so all possible tumors are visible - sounds like this is pretty standard

 - based on what she is seeing in the pathology report, most indicators are showing that I will likely not have to have radical surgery

 - If it's a lumpectomy (of which I'm hopeful), that could be day surgery (wow! I had no idea that a hospital stay was not a "for sure" event)


Some general things we learned that were news to me:

 -  the word "invasive" in the phrase "invasive ductal carcinoma" is scarier that it needs to be - this surgeon likes to use the word "infiltrative" - it means the tumor has infiltrated the ductal wall and is on the outside

 - 80% of breast cancers are not familial - in other words, just because my mother had cancer didn't mean I was automatically going to get it, and conversely, just because you don't have family history of it, that doesn't give you immunity. One in eight women will have some sort of breast cancer. I know that's not "good news" - but please take it as a friendly reminder to all of us women to self-check regularly :-)

 - there are a lot more indicators than just the Stage 1, 2, 3 etc. now.

 - one reason it's recommended not to spend too much time researching on the internet is because things are changing so fast - something that was completely accurate and relevant two years ago, could be completely outdated now


Another appointment tomorrow - more knowledge to gain.

Appointments with surgeons

I now have 3 appointments with surgeons this week - Wednesday, Thursday and Friday. Talking with a surgeon comes first in the process evidently, and then an oncologist joins the the team.

So I'm looking for clarity as to which to choose. I called one this morning on the basis of two strong recommendations, but she's retiring from her practice - bummer (for me, anyway). Because I've received so many names and stories, I've found that just as I think, "Ah, that's the one," then I hear another story that's not a rave review.  No one's perfect of course, but I'd like to feel secure in their hands.

Got another great way to look at this today - it's a plot twist!

Not in my plans...

A cancer diagnosis is not in anyone's plans. But it's a sharp reminder that, as much as I like to plan and "know" what's ahead on my calendar, "my times are in His hands."

I had a biopsy on Tuesday, after a mammogram and ultrasound. The positive diagnosis came on Thursday - #WorldCancerDay on Twitter (really?!) It's a mucinous invasive ductal carcinoma, which (according the johnshopkins website) accounts for less than 2% of breast cancers. As one friend told me, "It means you're special!" Nurse Soosie (good friend who is internet researching for me- thx!!) says that type is almost always a slow-growing cancer with a good prognosis that doesn't usually invade the lymph nodes.

Many, many people have recommended Dr. Nathalie Johnson but she's not covered by our insurance, so we're paying out-of-pocket for a consultation appointment with her on Thursday morning. Finding a surgeon is the next order of business, and besides talking with Dr. Johnson, I'm checking out the docs named by several wonderful friends.

I'll update as the journey continues.Thanks for your interest in this detour, and all your prayers and support. It means the world to me.