Just an update...

About a month ago I started having some weird pains in my right arm. Yep, the same side all my problems started with, and very similar to the pain a year ago that prompted me to get the ultrasound that found my recurrence. My arm was falling asleep and heavy feeling and I felt like there was a string connecting the inside of my elbow to my shoulder blade and every time I moved my arm it tightened. I started having trouble with range of motion reaching my arm over my head or behind my back. One day at work I actually had to have a co-worker put my jacket on me because I simply couldn’t reach back with my arm.
It didn’t feel like lymphedema-which is what can happen after an axillary lymph node dissection when lymph fluid has no place to go and the arm swells up-but then again I have never had lymphedema before so I wasn’t sure. I have a compression sleeve I wore as instructed-and it didn’t really resolve any of the symptoms.
I called my amazing lymphedema nurse Sabrina and told her what I was experiencing. When her response was “I need to see you right away-can you be here tomorrow at 11?” I knew something was going on.
My appointment with her was very educational.
Good news was I did NOT have lymphedema of my arm, but I did slightly have some going on in the right boob. Awesome. Easy fix-massage it out and wear a compression type camisole to sleep in for the next few weeks.
*thank goodness for the Ruby Ribbon tanks I bought last year!! Thanks Stephanie and Lori!
Bad news was I had a lymphatic cord in my arm, also known as Axillary Web Syndrome. When you have no lymph nodes, lymph fluid and cells and other stuff gets clogged up and solidifies.
Think Grandview Triangle at rush hour.
In the rain.
With a wreck.
*my KC peeps will get this analogy*
Yah, fun when that jam happens in your arm.

When that happens, you can actually feel and sometimes see a rope-like structure extending from the elbow to the armpit. Mine wasn’t visible to the eye because it was deep. But Sabrina could definitely feel it. And how does one ‘fix’ a lymphatic cord?
With a lot of deep massage.
And I mean DEEP massage.
Sabrina worked on my arm for about 15 minutes and it felt like an eternity. It was one of those ‘hurts so good’ type feelings because as she massaged, she was breaking that cord loose. And in turn, loosening the tightness and pain in my arm.
Woo-hoo! I left there with instructions to get an electric massager and work on my arm with it and do some stretching and range of motion exercises for the next few weeks and then see her back.

Within a couple of weeks it already felt better.
And then last weekend I noticed a hard lump under my original mastectomy scar extending the length of the scar from mid- chest to my armpit and it was tender to the touch. Knowing I was scheduled to see Sabrina today I didn’t worry about it.
And that’s what I get for thinking...

So my lymphatic cord is basically gone.
My breast lymphedema is cleared up.
And now I have radiation fibrosis to my scar and myofascial tissue around my right implant. Hence the hard, lumpy feeling.
Myofascial tissue is a type of connective tissue that provides support to your muscles and bones in basic terms. So, because I’m now 13 weeks out from radiation, we are seeing these side effects, and can for up to 8 months and sometimes a year post Rad zapping. And if I don’t do something about it now it will never get better.
Imagine being in terrible pain and being told that is the best it gets without intervention. If we didn’t work on it now and for the next few weeks it would only get worse.
Today Sabrina did some myofascial release work on my arm and at times I was fighting back tears.
But as bad as it hurt, I let her work on my arm for about 15 minutes. And I could not believe the relief when she was done.
And when she said I would be sore tonight she wasn’t lying. I’ll be popping a muscle relaxer and washing it down with a dry red before bed tonight.

BUT, since I was south of the river, I did get to go have lunch with my bestie that I don’t get to see often enough. Sarah is having some health issues of her own and an upcoming surgery that I know she is worried about so it was really nice to just relax and laugh, a lot, and catch up. She’s been there for me through all this bullshit so please say a prayer, light a candle, send good juju or whatever you do, for my friend for a successful surgery and easy recovery.
My fabulous KU CV RN friend-I may need you to keep an eye on her while she’s there! I’ll message you!

And my other bestie must have known we were talking about her because she text me in the middle of our lunch. Her Mama had surgery today for breast cancer and she’s her caregiver for the next couple of weeks so send her some strength too and her Mama some healing juju also!

Working like crazy the next few weeks. Using up all your PTO and sick time for treatments sucks so the OT has been nice. But apparently everyone in the city thinks my hospital is the place to be and CT scans are the cure for all that ails and we have been super busy pretty much every shift I’ve worked!
Next week we are going down to Fayetteville for one of the last times to bring all of Hailey’s stuff home. She still has some classes the first week of August, but has to be out of her apartment by the 27th. So she’s gonna stay with a sorority sister there and live out of her suitcase for a couple weeks until she’s home for a while.

Lots going on with the bald kid-I’ll save that for another post. Not bad-just some changes we are implementing.
Now I’m going for a walk in the cool (91 degrees at 9:30pm) night air to burn off some calories from lunch and then catch up on Handmaids Tale and Stranger Things....

Our ‘New Family’ Reunion

STOP! If you haven’t read the prior Mother’s Day post, you’ll have a hard time following who these people are that I’m going to be referring to as family in this post. So if you want to be less confused, go back now and read it first. If you choose not to, that’s fine too-but don’t say I didn’t warn ya!

Last week Brian, Ethan and I along with Hailey and Logan had the pleasure of traveling to our First Ever Sago Family Reunion. I don’t know how many years they’ve done this, but they do it every other 4th of July and it rotates through the adult Sago Siblings as host. Brian’s Mom Rita is the second of 4 Sago kids, and the only girl. This year the Reunion was hosted by her older brother Al and his wife Marcia who live on Wilson Lake in Florence, Alabama.
And it was so wonderful to meet all of our new family members and their kids and learn so much about the Sago Family.

Brian, Ethan and I left KC on Monday July 1st with a packed van and Minions blasting and headed to St Louis to his Mom’s. There we had dinner with Rita and Kees and a few (too many) glasses of wine. Our wake-up call the next morning was to the lovely sounds of the fire alarm going off due to some bacon cooking....bacon was great, and I’m sure no one in the neighborhood was late for work on Tuesday! From there we headed to Nashville via a whole lotta slow driving for some ‘construction’ on the highway. We actually saw zero work being done, just one lane closed for miles and miles with orange cones. Ahem. We made it to Nashville and parted with Rita and Kees there as they headed further south to Florence and we spent the night to wait for Brian’s brother Kellen to get his wife Susy and the kids there from the airport-they had been in Texas with her Dad for a few weeks.
Wednesday morning we packed up the kids and ‘Shake & Bake’ aka Brian and Kellen and did some quick shopping at Reese Witherspoon’s store Draper James ($$$$-I stuck with the super cute gingham ‘Totes y’all’ lunchbox and a cup instead of the $250 tunic...still an adorable store with sweet Southern charm). Then hit Edley’s BBQ for lunch before we were back on the road to Alabama.

Once in Florence we were treated to a delicious dinner at Rosie’s Mexican Cantina with the whole family that had made it in town so far-like 36 of us! It was so fun, and loud, and I knew then that the week would be a smashing success.
Back to Al and Marcia’s beautiful home on the lake, and we laughed and shared the story of how we first began looking for Brian’s Bio Mom and who we connected with first and how it all played out last September. (You are totally lost here if you haven’t read my prior post-I warned you!!)
Hailey and Logan made it in town late Weds night, as did the Sago’s from New Orleans.
Thursday the 4th of July we headed back to Al and Marcia’s for pictures, bbq, boat rides, kayaking, cliff jumping, tubing, Moscow mules, fishing, fireworks, t-shirt tie dying, homemade ice cream and tons of fun!

From the beginning of this journey to finding out who Brian’s Bio Mom was and meeting her, we have been welcomed with open arms. Last week was nothing different. Everyone was so good to us, and kind and helpful and accommodating with Ethan and his needs and really, just. like. family.

The week for us finished out with a shrimp boil brought by Uncle Mike and Margaret fresh from NOLA. Shrimp, corn, sausage, mushrooms, potatoes, with lemons, onion and garlic was served and I don’t think anyone spoke while we devoured all that goodness. Well, except for when we were fighting over the mushrooms...

Later that evening Brian’s cousin Brett put on a amazing presentation of their Grandfather Alvin Sago’s military time from being drafted to storming the beach in Normandy on D-Day. It was a fabulous presentation of pictures and letters and stories and incredible information. In Brett’s research, he was also able to trace back their family to 1770 French born Alexandre Sago marrying Dutch Margaret born in Holland in 1765. They had seven children in 24 years and Alexandre died in Missouri in 1840 at the age of 70. I am absolutely fascinated with the genealogy of all of this, especially since it was through Ancestry that we found the first relative match of Brian’s-his Uncle Al (married to Marcia, children Brett and Stacy).

We were also introduced to a family tradition, the game of Spoons. I’m not sure any other family plays Spoons with as much gusto as the Sago family....let’s just say there were no injuries. Other than Aunt Marcia’s kitchen table which now needs to be refinished.....Hailey jumped right in and made it to the final round only to be beaten by the veteran spoon player Amy (Brian’s sister) I will have to say the best move of them all was from Stacy-Brian’s cousin and fellow Breast Cancer Survivor, as she leapt and slid across the table and then wrestled the spoon from her nephew Mark!

As we relaxed that evening hoping to catch a glimpse of Natalie (Brian’s cousin)on TV as she couldn’t join us because she is an NBA Referee (Girl Power!) and had to be in Las Vegas for summer basketball, only to see there was an earthquake there that delayed the game due to the jumbo scoreboard shaking enough that they were worried it may fall on someone! FaceTiming with her later in her hotel room, she was experiencing the aftershocks and all the hangers in her closet were shaking!

I truly enjoyed getting to know everyone a little bit better-Little Mike the NOLA firefighter who kayaks with gators and his lovely wife Sydney who is an OT. His sister Michelle and her adorable daughter Brynnlee who has no fear and jumped off the cliff more than once. And Uncle Mike and Aunt Margaret-sharing a few LSU/Arkansas rivalry jabs with! We are hoping to get down to NOLA soon to spend some time with them.

Uncle Shelt and Aunt Jane who couldn’t believe poor Logan had never made homemade ice cream before so Uncle Shelt had to teach him exactly how it was done. Aunt Jane is probably one of the absolute nicest people I have ever met and their kids Natalie-who I haven’t had the pleasure of meeting yet and Stuart. Or Thuart as Eli calls him who helped with Ethan on the boat and getting his wheelchair up and down the deck.
(And who is single and darn cute btw ladies....)

Brett and Joni (Al and Marcia’s son and daughter in law) who were so fun to talk to and get to know and their kids Anna Paige-who every time she spoke to Ethan he was so intrigued by her and usually flashed her one of his toothy grins. And Mark-their youngest who is a flipmaster extraordinaire who was flipping off the tall dock next to ours and has the greatest personality! He spent lots of time explaining to Emery how earthquakes happen!

Stacy and Jason (Al and Marcia’s daughter and son-in-law) and what a small world to find out Stacy works with my cousin Holly Trumble in Oklahoma and is a fellow breast cancer sister! Their kids; Faith who is a sophomore at Oklahoma State and super talented, badass golfer. Brian is bringing her in to be the ringer on his KCPD Care Team Golf Tourney Team next year! And their son Taton who is also a great golfer and superb football player!

Thanks to Uncle Al and Aunt Marcia for opening your home to us all the hospitality you showed us all week-I imagine you needed a break after everyone left!

Of course spending more time with Momma Rita and Kees and Amy and Daniel and the boys and Kellen and Susy and their kids is always cherished-and being able to have this trip and time with all of them was wonderful.

I’m sure I sound like a crazy person and most of you got lost a few paragraphs back, but I come from a large, crazy family and they have always treated Brian like one of their own. But for him to finally have that connection of his own, his own big, loud, crazy family means more to us than many of you will ever know, and we want to thank everyone for making us feel at home! The kindness and caring, the generosity and inclusion-everyone acknowledged Ethan-especially all of the kids and made sure anything he could do they made happen-like riding in Uncle Shelt’s Boat! It all means so much to us. Hailey thoroughly enjoyed her time with her new cousins and I’m sure some shenanigans ensued we don’t know about!

We are already looking forward to the next one, but we don’t plan to wait that long before seeing y’all again!

Thank you for opening your hearts to us! We can’t wait to make more FAMILY memories with you all!