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Where's the opt-out button for cancer?

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Where's the opt-out button for cancer?

Please accept this impersonal way of keeping you all in the loop. AND I still want to SEE you and talk or pm with you please!

I am lucky to have many caring friends and family members, and it's already getting hard to remember who knows what.

10/22/2021

October has been a whirlwind!

❤ 3rd, my 54th birthday. I'm so lucky. Thank you for all of your sweet birthday messages!
❤ 16th, our son's most perfect wedding in our back yard, to the love of his life.
❤ 17th, our 29th wedding anniversary

🙄 Fun ends today, as I jump into chemo. I'm cold-capping to try to preserve my hair. It's soooo cold right now, holding my breath and making this post as a distraction. Should be numb in 15 minutes. 4 sessions of TC (taxotere and cytoxin = the chemo cocktail I have), sessions are 3 weeks apart. I'll be done by Christmas. After a short break I'll get fried with radiation for a few weeks, then start yucky meds (hormone-suppression) for 5 years. What an adventure!

Super grateful for the super slowww, totally annoying timeline that allowed me to be all healed from surgery and not yet in the midst of chemo for the wedding. Everything has actually been so perfect so far.

10/11/2021

Well s**t. Oncotype score 28 on the first tumor. Needed a 25 or less (x 2 tumors). Chemotherapy here I come! Today I had my cold-cap fitting - trying to control the things I CAN. First chemo 10/22, last on 12/23. Thankful that I still have hair AND b***s for my son's wedding this weekend! Crazy lucky how that timing all worked out.

10/01/2021

Just a quick update. I was supposed to have results by now from the Oncotype DX test. That's the test that will give each tumor a score between 1-100. We need a score of 25 or less (for each tumor) to avoid Chemo. For tumors under a 25 score, chemo is not effective/necessary. I've been waiting 2.5 WEEKS already. I found out today that they JUST received the slides/samples at Genomic Health. Seriously. If the cancer doesn't kill me, this snail's pace will. So crazy. So as it stands, I should find out the day before my son's wedding, whether I will start chemo the next week or not. Great timing.

09/15/2021

CLEAR MARGINS! Great news after a long 2+ weeks waiting for pathology results. This means that they successfully got ALL of the cancer that they knew about, and enough "clear" tissue around the perimeter of all 3 tumors. Of the 7 lymph nodes they sampled, only the one was "involved" (the one we already knew about). So yay, I am officially DONE with surgery. I still have two breasts, though they are still healing and I'm not positive they will not be misshapen. Whatever.

Now some more waiting, to determine whether chemo is next, or "just" radiation (and in any case, the yucky drug for 5 years). They have now ordered the "oncotype" test, which will take approx 2-3 weeks. Which I guess is a fine timeline, as I'm supposed to be busy healing from surgery for 4-6 weeks before any more action steps (this is all sooooo slow!). It's been just over 2 weeks today since surgery.

per Google:
Oncotype DX is a test that predicts how likely breast cancer is to come back after surgery and the likely benefit of having chemotherapy. The test gives a score between 0 and 100, and people who score above a certain number are more likely to be offered chemotherapy.

Fingers crossed for a score at/under 25. If it's under that, supposedly chemo will not add any benefit.

In addition to the Oncotype, the multiple other factors that will be considered/discussed are:

suggesting I may NOT need chemo:
1. The fact that I am thru menopause
2. that my cancer is ER+

tipping toward needing chemo:
1. the fact that it had spread to my lymph node. If there had been any more nodes involved = definitely chemo.
2. size (over 1cm). My big one was 2.7cm

Celebrating the WIN for now and trying to stay sane. Thanks for your love and support!

09/08/2021

Tick tock. Still waiting on pathology reports. With the holiday weekend, we're really only on day 5 (of potential 10+). Finally getting my head back into "work mode" though, so I'm feeling human today

09/01/2021

Good morning! Step one is behind us. Surgery was a success yesterday. They removed the mass and 5 lymph nodes from the left breast, and the mass and 2 lymph nodes from the right. Booted me out of the hospital about an hour after surgery, and I SLEPT all afternoon and night, flat on my back (thanks to the oxy!)
Now we wait, again. Might be two WEEKS before we know the next steps - based on pathology and oncotype. Hope to hear before then that we have "clear margins" (that enough non-cancer-y tissue was taken from around the tumors) and no need for further surgery. I'm thrilled to be at this step. Just healing and chilling before any ugly drugs or radiation. I have to wear a chest binder for at least 2 weeks - looks like an old-school ruched tube top, only tighter, with a huge strip of velcro down the front. My incisions are glued - no external stiches or staples (but plenty inside). It's a beautiful morning on my screen porch and I'm super happy I'm not a ghost yet (borrowed from a very brave and funny friend Megan Larimore). Thank you all for your good vibes and prayers yesterday. What an amazing feeling to be so supported by friends far and wide.

08/30/2021

Follow the bouncing ball! We're definitely learning (trying!) to not get attached to any plan or outcome. This morning they confirmed that a mass in my OTHER breast is also indeed cancer. WTF. A totally separate/different kind of cancer. ER/PR+, Her2-. So unbelievable! Thank goodness they found it now and thank goodness I opted for the breast MRI - it was a choice.

Luckily, thankfully, we are still moving forward with "the plan". I have to be at the hospital at 5:45am TOMORROW. Surgery to remove the two tumors, and the cancerous lymph node - and perhaps a few more lymph nodes. I will be home by noon (crazy!). Then it's more waiting - about a week for pathology and next steps. When they know the oncotype (and other things), they can decide whether I will move on to chemo next, or radiation. I should have about 4 weeks to heal before next treatment.

Perfect timing to host Evan and Naomi's wedding on October 16th in their new/revised venue - our own back yard! I intend to hold off, if it all possible, with next steps until after that.

Today, at my pre-op appointment, I had "clips" placed in both tumors (one guided via ultrasound, the other via mammogram), and was injected with radioactive solution to help guide the surgeon (via her GPS wrist watch - so cool). The dye will show which is the "sentinel"/first lymph node, to be sure they take the right ones to biopsy. It will also make my p*e green! I feel thoroughly poked and squeezed this evening.

Thanks for all of your sweet messages, prayers, good vibes and well-wishes. We are on our way to the other side of this. Only way to get there is THROUGH. I'm ready!

08/26/2021

Hi friends. Here's an update. On Monday, I went in for the ultrasound and biopsy of the "moderately suspicious" mass found on the other/right breast during the MRI last week. After a few minutes of trying, and a few different "try-ers", they couldn't locate it with the ultrasound and said I would need to schedule and MRI-guided biopsy instead . . . for September 1st! Argh! This was a low point for me so far, couldn't help but cry actual tears right then and there. I have the actual surgery (lumpectomy) scheduled for 8/31 - who knows how much farther that would be pushed out now.

I came home and crawled into bed to sleep away my mood. I awoke to two messages from UW - they squeezed me in!

So today was that day. This morning I had an MRI-assisted biopsy on my right breast. Fingers crossed we get the results in time (normally takes 4 days and we have 2) and of course that it's benign. If it's cancer, it's my understanding that it would be a different kind of cancer . . . no idea how we'd proceed from there, but certainly not with a lumpectomy next week.

I might get results on the weekend, which is inconvenient since I can't TALK to anyone, but I'm just looking for the word "benign"!

Thanks again for all of the love, getting close now! Just want this outta me NOW.

08/21/2021

Good morning all!

Geez, I'm so overwhelmed with the support and LOVE. It's humbling to see just how many beautiful souls I'm connected with. Please know that I pause and think of you personally when I read your comments. I am filled with so much gratitude that you're out there sending love and support. Truly. It's mind-boggling actually. Facebook can be a beautiful tool when used to truly connect and I'm so grateful to live in this time (of technology AND medical advances!). THANK YOU!

08/20/2021

Hi everyone who is popping in here today! I will update this page asap with the latest scoop. Obviously I haven't posted here in a few days. Thanks for being here!

08/12/2021

No idea why I thought I was the one woman who would skate by without breast cancer. I loosely observed the breast cancer journeys of friends and family, but never considered I could be next. I have very little family history of breast cancer, and do not have the brca gene. Yet here I go, with the unwavering support of my husband John A Swain and grown sons (and their amazing partners) and the expertise of our world class UW doctors. I have several beautiful friends who have gone down this road before me and some who are still in the fight, modeling strength, grit and faith. I'm confident and optimistic, ready to fight like a girl.

Follow along if you'd like to, but I'm going to treat this page like a journal for myself too. No need to come along for the ride :)

Here's what I know so far. I have invasive ductal carcinoma. Tumors in both my left breast and at least one lymph node. Grade 3 (most abnormal), Stage 2 (because it has spread). Hormone receptors: Estrogen positive, Progesterone negative, HER2 negative. So my particular cancer is using estrogen to grow. This is good news and makes it the most treatable since they know how to attack it (with hormone inhibitors).

So far I have only met with the surgeon. She is optimistic that we could start with surgery (then radiation). This was amazing to hear, that I may be able to keep both breasts AND my hair! Seems almost too easy. However, she did say she will defer to the medical oncologist if she feels I should start with chemo.

My first appointment is today with the oncologist. Fingers crossed!

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