Surgery Follow-Up

Just got back from my 2 week follow up with my surgeon Dr Wagner and though I didn’t get to have this gnarly drain pulled, I did get really good news! Have I mentioned she’s totally my girl crush? She’s so smart and personable-and damn good at what she does!
The tumor she removed was approx 2.4 x 1.8 x 1.3 cm and she got at least 1mm margins all the way around it. The best news is that only 20% of that tumor still had active cancer cells which means the chemo had killed 80% of it already. This was fabulous news because hormonal cancers like mine don’t typically respond that well to chemotherapy!
So, on to the lymph node dissection....Dr Wagner knew she was probably going to be taking 1-3 nodes based on my prior MRI and their proximity to the tumor. But once she started working on the main tumor and saw how embedded in the muscle it was she realized it was likely a lymph node that had been missed from my previous surgery in 2012. She knew then she had to remove as many lymph nodes as possible and ended up taking 13 of them, getting up into my level ll axillary nodes. (There are 3 levels of axillary lymph nodes-most of my level l were removed with my first surgery in 2012-but not enough) As I mentioned in an earlier post, of the 13 she removed 2 were cancerous. They showed zero response to the chemo and the largest one was 8mm (just under a centimeter) and considered a macrometastasis due to its size. My concern with these two nodes and them showing no chemo response was that they would be considered metastatic disease. However, preventing that was Dr Wagner’s goal and why she took so many lymph nodes and why the next step of radiation is a must. Hormonal cancers like mine -95% Estrogen positive-are slow growing, hence the likelihood this recurrence was a missed lymph node and took so long to be big enough to be palpable. So at this point it doesn’t appear I will need to do any additional chemo, and my original staging has not changed (woo-hoo!) my bigger concern will be dealing with lymphedema.

Radiation Therapy is next, and as long as my drain gets pulled before next Thursday, I’m scheduled for my education and simulation that day. Treatments will be every day for 5-6 weeks, though there is a chance I will qualify for a study of hyperfractionated radiation which would reduce it to 4 weeks.

In the meantime I’m resting and trying to keep from doing too much so I can keep my drainage output to a minimum and get this damn thing pulled soon. And I’ve binge watched so much Netflix and Prime and on Demand that I’m sick and tired of the TV-though if you want some recommendations I’d have to go with ‘YOU’ and ‘Abducted in Plain Sight’ on Netflix for sure...and I’m a true crime buff so I’ve watched a ton of Datelines and a great recent one is ‘Reckless’ dealing with a young mans suicide and his girlfriend being charged with involuntary manslaughter...controversial yes-but good.
And I did just get Brian to watch Tidying Up with Marie Kondo and we’re ready to spark some joy up in here!

More than anything I’m ready to be done with this cancer crap and almost cried when we left the office today and I didn’t get to have my drain pulled. It was definitely not a crying situation, and the tears are more out of frustration of just having to do any of this from a damn missed lymph node from 7 years ago. Any and everything I want to do this spring is on hold for radiation and appointments and it just pisses me off. Don’t get me wrong-I’m grateful and happy to be alive and here to fight, but there are many days the smile on my face is forced and the fight gets tougher and tougher. And it’s the help and support from my family and friends that gets me through. That may sound trite, but the texts, cards and dinners and care packages and love from all of you really do keep me going. That and if anything I share from my experience can help even one woman, then I know the fight has been worth it.
So thank you all for everything you have done for our family.
Fingers crossed this last drain comes out end of the week or early next week!

The following are some pics from my surgical site-before the dressing was removed and how nicely my scar looks today. It’s definitely bigger than I expected but man does it look pretty and smooth.
Sorry for the graphic nature-but cancer ain’t pretty...

And the pathology is in....

Dr Wagner called today to give me my pathology results that are already back!
It appears that she got clear margins on the muscle side of the tumor-though that can be hard to tell because muscle contracts when cut on. Regardless, she feels comfortable that if any microscopic disease was left the radiation will get it!
She removed 13 lymph nodes from my right axilla and 2 were positive for cancer. One was large enough to be considered macrometastasis at 8mm in size. This could possibly mean some more chemo-but again, the radiation will also help here. It definitely means I will likely struggle with some lymphedema this time for sure and and just glad to have already been set up with Sabrina, the Lymphedema RN Specialist-who I’ll see again in 2 weeks. I see Dr Sheehan later this month and will know then if more chemo is needed.
Until then I’m resting, doing my arm exercises and catching up on all my shows!
Thanks to Sarah Wright for dinner tonight-my fave comfort food chicken pot pie and her amazing salted caramel brownies will hit the spot.
Gonna shower later to get all the hospital funk off me and finally check out my drain and incision site.
More later!

-K

Surgery done....home to heal

I’m home with my fancy pink bra with special drain loops and a Jackson-Pratt drain. Just one drain this time-which is nice, though I was hoping for none.
The tumor had shrunk quite a bit from the chemo, which is good, but just meant what was left had to be carefully resected from my minor pectoral muscle. That was the easy part! The part of the tumor that had overlapped my axillary vein was the tricky part. Dr Wagner had to debulk a lot of scar tissue, take some more lymph nodes that were too close to the tumor and try not to damage any nerves along the way. All this tedious work done in a very small area left those tissues and my arm highly irritated post-op.
In the recovery room my pain was so bad my blood pressure was 160’s/100. And 25mcgs of Fentanyl with IV Tylenol wasn’t even close to cutting it. I can’t even begin to describe how bad it hurt. Considering I had a bilateral mastectomy 7 years ago and spent 4 days post-op with just Tylenol for pain relief because that’s when we found out I was allergic to codeine, and this pain was worse than that....yes-it hurt and I was a wreck. The pain was a cross between numbness and tingling from my armpit to my fingers and a stabbing pain in my scapula all the while feeling like my entire shoulder area was in a vice grip. Oh, and the burning under my arm felt like a hot poker. Good news though-with all that craziness going on, I barely notice how uncomfortable the drain is!
It took lots of experimenting with pain medicines to figure out the perfect combo of Tramadol and Tylenol, Valium every 6 hours for the muscle spasms and MS Contin every 12 hours to get my blood pressure down and the pain under control enough to go home.

I have to say I have been extremely impressed with KU through all of this. The education I’ve received about every aspect of this journey from surgery to post-op care, exercises and drain care, and potential lymphedema has been amazing. My surgeon and all the staff were awesome. My first surgery 7 years ago I left the hospital with little info about restrictions and drain care, a surgeon who left town and his partner who saw me on discharge day who was less than helpful, so the fancy books I get from KU are a nice and welcome change from that previous experience.
My friend, neighbor and co-worker Sara started a Meal Train for us-let me know if you want the link. I can’t raise my right arm any higher than shoulder level and no lifting heavier than 5lbs right now so me in the kitchen, attempting to cook is definitely a no-go for a while. Thanks to my Momma and sisters for joining us yesterday and for my Rose who almost got kicked out of the Recovery Room for coming to check on me! I was coming out of my anesthesia high and writhing in pain and heard someone call me an asshole and though I couldn’t see her very clearly, I knew the voice of my favorite smart-ass former co-worker! Thanks for stopping by this morning -I was definitely in less pain!
Got a couple days of resting to look forward to, so throw me your Netflix/Hulu/Prime faves I can binge. I’ll just be waiting on pathology hopefully showing all clear margins! Thank you all for the good thoughts and prayers!
Will update later this week!
Gotta go show Brian how to strip and dump my drain!

-K

Chemo #4-and ALL DONE!

I just realized I hadn’t updated my blog since I was in the hospital. Sorry-with the holidays and feeling crummy 23 out of 24 hours every day and my ‘chemo brain’ (believe me-it’s real!!) I feel like I haven’t had time to do anything.
So, here’s the highlights:
In case you hadn’t heard, drumroll please.....
NO METASTATIC DISEASE!!!
My hard fought for PET Scan showed that the areas in question on my back and pelvis were in fact not cancer spread but could be areas of old injury or arthritis.
BEST NEWS EVER! It was all I needed for Christmas, New Years and all my future birthdays!
And let me tell you, when you start thinking about having Stage 4 cancer and a lesion in your back, your thoughts of future birthdays changes dramatically. The median survival rate for stage 4 breast cancer is 55 months.
Yep, take that in....roughly 5 years.
My oldest would just likely be getting or recently married, maybe even starting a family.
My middle son...wait, who knows where he’ll be in life, but anywho...
And the youngest? Yes, still at home and completely dependent on me. And now my husband. Alone.
And my husband. Well, we know he’d never survive without me. ;)
All the things I would miss was really beginning to take a toll on my emotional health. I was sad, and angry and anxious and mad all at the same time. I started planning the remainder of my life in blocks of a few months at a time. And that was all dependent on actually feeling well enough to enjoy any of it.
I can honestly tell you that if we had found out it was metastatic disease, Brian was going to retire as soon as he could and we were taking off to cram all the things I ‘needed’ to do in five years.
And of course I began to realize that no matter how well I planned any of it, 55 months was simply not long enough to accomplish whatever it is I was put here for -still figuring THAT out BTW....
And I was mad. Angry. And if I talked about it I teared up. And how do you tell your kids that?
You don’t.
You put a smile on your face and deal.
You nod and smile and tell everyone you feel fine when you’re barely hanging on and want to scream at the sky.
You put makeup on when you go out to hide the eyelashes and eyebrows you’re losing and the toll the chemo is taking on your skin.
You try to keep everyone else around you from falling apart when you’re the one in pieces on the inside.
You pray and pray and pray some more and reaffirm your relationship with God.
You start repeating your go-to mantra
“It is what it is.”
“I can do this.”
No, I HAVE to do this.
And it’s exhausting.
My time sleeping and in bed was increasing. Because if I was asleep at least my brain was resting from the constant noise inside it.
So that should tell you how relieved I was to get that good news. I mean, the noise in my head is still there and the thought of this coming back a third time still haunts me, but I can at least put that on hold right now and fight the battle in front of me.

Speaking of...
I’m at my last chemo right now!!
Woo-hoo! We did cut my dose down 25% to hopefully keep the bad side effects at bay. After my third dose I was terribly sick again with fatigue and nausea and shortness of air and fevers and all that crap that I barely avoided another hospitalization. Though I did end up with a CT to rule out a pulmonary embolism. Thank goodness that was negative!

With the good news of no mets, I was able to meet with my amazing surgeon and set a surgery date!!
February 4th is the big date to get this shitty tumor out of my body!! We did find out that the chemo has shrunk this thing drastically-so Dr Wagner will be taking part of my pec muscle out with the tumor and any axillary lymph nodes that are still there. If there are any lymph nodes I will end up with a drain after surgery and if not-no drain. I’m good either way-I just want anything in there that could come back to haunt me to be gone this time for good!
More good news-my implant gets to stay for radiation after my surgery!! Then, if it changes shape from the surgery and radiation, or I’m just not happy with them they can be traded out in the near future too! Insurance is gonna love me this new year....

We are heading to St Charles this weekend for a belated Christmas celebration and just fun family get together with Brian’s family that we are all looking forward too!
Hailey is in Chicago with Logan having a blast. Parker has been extremely helpful at home with the bald kid and me.
And the bald kid has been healthy! He was fighting a nasty cough and some congestion he just couldn’t get rid of, but we got him all squared away with his inhalers and essential oils and some immune stick we use on his chest. Keeping him out of the hospital was my goal while I was on treatment and we have succeeded! Though on a funny note, I’ve completely failed in my other aspect of parenthood as Ethan’s first day back to school was today.
Or supposed to be.
Guess who didn’t know and therefore didn’t get the bald kid up until 10am??? Yep, mom fail. Oh well...

Sorry for the long update. Promise to post more in the new year. We had a fabulously low key holiday complete with some awesome food, the hilarious great big ball of glory game, a game of Left/Right/Center that my starving college student nephew won, and a completely hysterical and inappropriate game of Cards Against Humanity with my Mom, kids and my 14 year old nephew!!!

Thank you again to everyone who helped out and showed up for the Head shaving event. It was wildly successful and help put my worried mind at ease.
I truly have the best tribe in my corner and couldn’t do this without you.
From the gifts to the donations and the PTO donations-its all so supremely humbling. We will definitely be paying forward all this kindness shown to us.

My best to you and yours in the upcoming year. Make the most of it. I learned this year-late in the year but never too late in life to make each day count. Because believe me when I say how quickly your life plans can be altered in an instant and you don’t want to have any regrets!
My main New Years Resolution is to beat this cancer AGAIN!
Got lots more I’ll share with you soon!

Love, hugs and prayers,
K

A big reminder to take it easy....

I started feeling kind of crummy on Thursday-just a little worn out and easily tired out doing anything. Friday I felt pretty bad-mostly like I was getting a cold-stuffy nose and headache.
Friday night I went to bed not feeling too terrible after taking some Tylenol sinus stuff. Well......woke up in a cold sweat with a fever and chills and knew it was more than a cold. It’s also day 10 since my chemo. Which means my counts are likely at their lowest. Called the cancer center and awesome Dr Allen booked me a room at the Inn. The NKCH Inn.
Labs, blood cultures, chest X-ray, fluids and antibiotic later.......and I’m terribly neutropenic. My white blood cell count is .1 on a scale of 4.5-11 being normal. Sine my wbc count is so low it doesn’t even take a cold to make me sick or have a fever. Just being this neutropenic can cause all those symptoms.
They are going to start me on a daily injection of Neupogen a white blood cell booster to help combat the low counts.
I’m resting nicely here and have complete control of the TV so I’m good.

If you come visit YOU MUST BE ILLNESS FREE! Even if you just think it’s a cold or have been around someone ill you can’t be around me. At all. Now is my cue to quarantine myself and wear a mask at all outings so don’t be surprised.
I love ya, but your germs can literally kill me. I have zero immune system right now and even with the shots it will take a couple days to get my counts back up. So I’m here at least through Monday.

Thanks for your love and support! Will update later if anything changes!

K

And the stockings were hung by the chimney.....with Frank....

It was a low key weekend for me, and the chemo still kicked my butt.
Friday was good-I worked 11 hours and that was all I could muster. Saturday Brian treated me to a pedi from Annie and Alex at The Nail Place-they are the best and totally pampered me! Go see them for your nail needs! Cause if I could wear the gel nails to work they’re the only place I’d have them done!
Then we lunched at Noodles & Co and picked out a REAL Christmas tree! We haven’t had a real tree for years and I love one. This year the hubby gave in and the kids and I picked out a lovely one. Now, as far as decorating the tree.....not quite done....but Hailey and Logan and Parker did get some stuff up.
Then the Jaros family brought us a delicious dinner.
I woke Sunday and took all my meds but still spent most of the day in bed. The chemo causes such a reaction in my bone marrow that my hips and back and legs hurt so bad that I couldn’t ever get very comfortable. And the nausea, though better, was still there and I just nibbled all day long to combat that.
Today my counts were super low so I stayed home from work and slept. I can’t be exposed to anybody’s icky germs while my counts are low so if I work tomorrow I will be the masked/turbaned CT tech....
Hailey got stuck here (yeah!) and her boyfriend Logan couldn’t get out to Chicago until today so my house got a few more decorations up and I got to spend the time with these amazing kids.
All the while having my house cleaned because we have the best neighbors/Bunco group EVER! The ladies I play with are so nice they have pre-paid for 7 months of housecleaning for us! Talk about an incredible gift!! I don’t get teary-eyed over much, but when Sandra presented me with that card, the waterworks started! I can’t thank you all enough! To not have to worry about the dust and the bathrooms sure eases my mind.
We are so close on the Go Fund Me and Katie will be enjoying her last week of hair in Vegas this week so let’s push for that last $875 so she gets to come home to be the bald Medic!
The meals, the cards, the gift cards, the prayers and the good thoughts are helping. I know I have an entire army in my corner and it gives me strength.
Chemo #3 is on 12/13 and I’m hoping to have fewer down days between now and then, but we’ll see. Ya know that saying about making plans.....we learned long ago to take it all in stride and this is no different. I just wasn’t blessed with the patience gene.
If you are out and about this week please be safe-some of us HAVE to go to work in this and if you’re out doing stupid shit chances are you’ll see one of us. So don’t check your mail, don’t go to the store, don’t shovel the walk and for Fox sake leave the paper. If you have a teenage child please send them to do those things for your elderly neighbors. Every year we have someone slip and fall and end up with a head bleed for those very things and it’s simply not worth it.

Now I’m gonna cozy up to the fireplace where the stockings were all hung with care and Frank is loving the heat.....

love, hugs and prayers

K

Happy Thanksgiving and Chemo #2 done!

Happy Thanksgiving all!
Today was a great day spent with family and friends and delicious food.
Thanks to my sister Kim for hosting at her house, all I had to bring was the ham (courtesy of Em Chamas-the best) cheesy potatoes and sangrias! I was able to eat a plateful and then promptly took a nap.
Chemo #2 was yesterday and we tweaked a few things with my medicines in hopes that I will have less days of feeling completely crappy this time. Though the effects are cumulative, there are still some wonderful drugs out there to help minimize side effects. My counts were all good except my white count was markedly elevated. It was up to 22.8 on a normal scale of 11 being the high end of normal. So they suspect one of two things: my bone marrow jumped in to overdrive from memory of my chemo years ago and started rapidly producing white blood cells in response to the chemo. OR the more likely that I was exposed to something in the last few days and my body is trying to fight it. Hopefully the latter is not the case because now my counts will take a huge hit and if I’m already sick I would likely end up in the hospital if I spike a fever. Prayers for the first one and my white blood cells are just gearing up for battle!

Hailey was home to join me and my friend Heather too-it helps pass the hours with laughs. They did put us in a private room once they saw my company....does that tell you how well they know me or what!?!? Scheduling at the cancer center is still working on getting my PET scan approved so we can see if this spot in my t-spine is metastatic or not. They at least asked for some more info to re-evaluate so maybe we are getting somewhere. I’m trying to be patient and I know we don’t need the answer today or tomorrow or even next month. But I would really like to know since it can alter my surgical course if it truly is a met.


Planning to work tomorrow so I’m hitting my bed real soon. But not before I eat a piece of pumpkin pie....

Every day is a gift and a blessing and I hope your Thanksgiving was spent with those you love. In our daily routines it’s easy to take the days for granted and that you’ll always have tomorrow. In fact, we never know what tomorrow holds so live each day like it’s your last and never forget to say I love you, and always eat dessert.
Please remember our first responders, healthcare workers, Police and Firefighters working today. (And with a full moon no less....) and for our military serving and protecting us, most so far away from home and their families.

Lastly-so many thanks to all of you for your support and love. The meals, the cards, the gifts, the donations. It eases my worried mind having you all in my corner.
The Go Fund Me for my sis Katie to shave her head is officially only $975 from the goal!!! We had some check donations come in this week that have pushed us closer. And Monday morning we have a TV interview with McKenzie Nelson from channel 41. (I’ll let you know when to watch for the airing) She did a spot on us last year about our affiliation with the Cure of Ars Gift Gallery and I want people to know how truly wonderful my sister, her co-workers with the KCFD and our community have rallied around us. It was Katie’s idea to do this and I want to recognize her for such a selfless act. It may not seem like much-but ask 10 women if they would cut their hair off for you and I’ll bet you get 9.75 firm No’s. And a huge thanks to all who have been putting together the event for the Not today Cancer head shaving on Dec 5th-my sisters and my mom and step mom and high school friend Tracy have all pitched in.
We have so many awesome raffle prizes and a dozen sports related memorabilia that will be silent auction pieces! Be sure and join us.
Wednesday Dec 5th 6-9 Pm
No. 9 Saloon on N. Oak in Gladstone, MO.
$1 tacos and kids welcome!
Raffle tickets can be bought there that night and we will be pulling the first prize right before the head shaving and continue until the main item of the Mahomes signed jersey and Salvy bat are pulled last! Need not be present to win. We will also start pulling our silent auction winners at 8:30pm.

Thanks again, that pie is calling my name and so is Ethan now apparently ready for bed. He has had an ear infection for a month now we can’t get cleared up so a trip to the ENT is in store real soon since his pediatrician has seen him twice and the antibiotics don’t seem to be doing the trick. Bedtime is the worst when he has to lie flat so there’s a lot of coddling and positioning just right and of course Minions and King Julien....

Oh, and watch for info on my hubs 50th birthday party on Saturday Dec 15th. Getting all the plans squared away this weekend I hope and will post soon! We’d love to have you join us to celebrate! And this year with his newly found family too - so blessed to have them all in our lives!

Love, hugs and prayers
K