Good News, New Challenges, and the Reality of Recovery

Gratitude Corner: Support Systems in Action

This past weekend brought some quality time with friends and family for both Robie and me! My youngest sister came up and Robie finally got a small reprieve! I mean, imagine if you were the only person in your home that could lift more than five pounds... 😊 and that doesn't even take into account the caregiving! My sister was here for 4 days, so for 2 of them he traveled to Southern Oregon to visit his mom and check on her progress, as well as fit in some much needed time with friends. His mom is still in an assisted care facility, working diligently through her PT and healing up enough so she can return home. I know how grateful he was to spend some time with her and also enjoy some downtime with friends. He even found time for the one place he is able to find zen- the golf course, even though the weather wasn't ideal! (If you haven't heard it yet, check out the podcast episode https://bit.ly/TGSROBIE where Robie talks about his love for golf and what it means to him.)

I was incredibly grateful that my sister Kricket came up to help out. From the little things like making sure she could reach and pick up things I'm not allowed to - to handling cooking, vacuuming, driving, and all those everyday tasks I'm still not fully managing on my own. Kim also stopped by one of the days to help with my shower and changing dressings on my wounds, ensuring I didn't have to manage everything solo during Robie's 60-hour break from doing it all!

We even had a delightful girls' night making cookies to bring to Robie's workplace, thanking his colleagues for all their support with meals and being our primary support system here in Bend. We watched a movie and tackled miscellaneous household chores like laundry and changing sheets - important tasks that are frustratingly exhausting to attempt alone. This also meant Robie didn't have additional worries waiting when he returned home.

I'm especially grateful that Robie's mom continues to improve and is on a trajectory toward returning home once she feels confident in her recovery. While it's difficult not being able to see her, I'm thankful Robie had this opportunity to spend time with her.

Standing with Shawna Challenge: How Did You Do?

I'm very curious to hear about your experiences with the Standing with Shawna Challenge! Was it different depending on your age? For those of you in your twenties and thirties, was it barely a challenge at all? And what about those in your forties or older - was it more of an adventure trying to stand up constantly without using your hands?

We already got that cheeky response from our teenage participants who reminded us they never use their hands to get up anyway - it's as simple as walking down the street for them!

I'd love to hear from YOU about your experience:

• Were you able to complete the full challenge?

• If not, how many days did you participate?

• Was it easier than you expected?

• Did it get easier as you practiced each day?

Please reply to this email with your experience! We'll feature a few of your responses in our next newsletter and share them on social media so others can hear about your journey.

I'm still finding it challenging to get up from lying down in bed without using my arms - that remains the hardest part. I was impressed that after two weeks the rest got easier! I'm hoping to stick with this practice of getting up from sitting without using my hands long after these few months. Building core strength is something I know will benefit me going forward rather than losing momentum after recovery.

Medical Updates: 7 Appointments in 5 Days

Let's start with the celebratory news I keep forgetting to share more fully - all the results came back from the 5 tumors (yes, 5 tumors in one breast!). With full pathology evaluations from 3 sources, the definitive one being MammaPrint, we received wonderful news: going through chemotherapy would only improve my chances of survival by 1%, so it is NOT a necessary treatment and will not be something I undergo. Yippee! No chemotherapy for me! This was the most exciting definitive result after these appointments. Based on the initial tumor biopsy we were hopeful this was the case, but is great to have it decided.

The most interesting thing I learned during these appointments was regarding my DVT (deep vein thrombosis). I discovered that a blood clot and a DVT are not synonymous, which I previously thought they were. I had this mental image that my DVT was simply the size of a piece of quinoa or rice. However, during my follow-up ultrasound, the tech (who has been the most informative and amazing resource throughout all of this) pointed out that my condition was improving because the clot was less than the full length of my calf, whereas before it extended from just below my knee to just above my ankle!

I had no idea my DVT was that extensive! I honestly thought it was just a small spot rather than the vein being occluded along the entire length of my calf. Isn't that wild? It seems so much more serious than what I imagined. I was worried about a small thing the size of quinoa that could break free and be dangerous if it traveled to other parts of my body, and yet I've got a vein that is backed up for a couple of feet!

The good news is that it's getting better - now it's about two-thirds the length of my calf instead of the entire length. We're making progress, but I'll still be on medication for a few months before it's fully resolved. It's just astonishing to think that this happened in the first place.

This leads to my third key update: I'll be seeking additional opinions on my long-term adjuvant therapy with aromatase inhibitors. The one being recommended carries a risk of blood clots, and considering I developed a clot even while on preventative medications (though after major surgery), I'd like more expert perspectives.

I also want to better understand the importance of this treatment and the difference it makes, since I'm right between "low" and "ultra-low" risk for recurrence. Strangely, this borderline position means taking medication for longer. But with such a low recurrence risk already, I want to fully comprehend how much this therapy changes my chances before committing myself to the expense, stress, and side effects of medication for an entire decade.

They've also changed my wound care routine, which has been helpful in some ways and frustrating in others, but I'll save those details for the next newsletter. It was certainly a busy week with lots of information to process!

Keeping It Real: The Being Honest Piece

It was lovely to have my sister here for the weekend and finally get some downtime. We actually watched a movie and a short mini-series, so I did finally get that couch TV time I've been craving since my surgery. While we accomplished some household tasks, we didn't get to everything - those art projects we planned never happened. So I'm not integrating back into what I imagined healing to be quite as much as I'd hoped.

Sleep continues to evade me. The medications they're giving me sometimes work magic - I'll get 7 or 8 hours for a night or two - and then I go right back to only getting around 4 or 5 hours with no napping. You have to wonder how much of my exhaustion stems from this lack of rest. It's been 5 ½ weeks since my surgery and I've slept 7 hours or more on about 6 occasions…

I get discouraged that it's been over 5 weeks since my surgery, and I still can't take walks or do nearly what I thought I'd be doing at this point. Having to cancel so much last week humbled me into realizing how little I can still do. I'm incredibly grateful for my amazing husband who does so much to keep our lives moving forward while I'm not able to participate as I normally would.

I remain staggered by the energy that healing demands. I long to return to my normal functioning, yet I'm trying to sit patiently in this time, seeking lessons and wisdom from it, growing in whatever ways possible, and discovering what this experience has to teach me. Because that's all I really can do.

I find myself curious about what more I can let go of, just when I thought I'd already surrendered everything possible. There still seems to be more that I can't show up for, can't get done, and won't be able to do. Such is life...?

On a positive note, Robie's paid leave through Oregon finally came through - they figured out their mistakes! It just took five weeks. This makes me worry for those who don't have any financial cushion. I hope these administrative delays happen to those of us who can handle it... is that how the world works?

I appreciate the sweet photos of flowers and thoughtful notes: especially the ones I got around Thursday and my appointments.

Don't forget to update me on your progress on Standing with Shawna!

With gratitude and grit, Shawna

PS - This will likely be one of the last emails with an advertisement included - but I did subscribe to 1440 and appreciate the easy to skim format and the quips of info they offered - let me know if you check it out!

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