Due for some good news....

Last week I was feeling pretty defeated. There may have been a smile on my face and a witty, sarcastic comment out my mouth, but my soul was hurting. The cancer is back, there’s possible metastatic disease in my spine, there’s a new spot on the same breast that has to be biopsied. Like yesterday.....
All the plans made would potentially be changed as the bad news just kept coming.
And to all my supporters who smiled and hugged and encouraged and reminded me that this is just another bump in the road I’ll overcome, or that God doesn’t give us more than we can handle, I was having a really hard time believing any of that. I got to have lunch with two of my oldest friends and shared with them the need I have to know that when I say I need/want/have to have this done NOW, I know that they get it and will make sure it happens. Whether it’s my need for rainbow sherbet ice cream at midnight or to get my family together and figure out how to get us to the closest beach for some private family time, I know these girls will make it happen. No questions asked.
Morbid, you say? Well, probably so. But it’s how I operate best. Worst case scenario. Then anything not completely tragic and utter bullshit is just icing on the cake. And it also means I’m never taken off guard again. Cause that’s not happening. Again.
Chemo #1 was Thursday Nov 1st. Day of and day after not bad. I was lobster red and a raging lunatic and wanted to eat everything in sight from the lovely steroids, but all in all-not too bad. Brian will be seeing a Cardiologist on Nov 30th, but we are convinced it’s just been stress. I mean, he is married to me, after all....
And by Friday evening I hadn’t heard from KU about the biopsy on Wednesday of the 9mm mass the MRI found. Being that I knew KU sent path for additional slides of my first biopsy and it had taken a couple of extra days, I had convinced myself it was positive since it was taking so long. Friday night I went to bed knowing I wouldn’t have any answers over the weekend and I just had to make it through the next 2 days.
I went to bed and was awakened at 2:30am when Parker was worried about me and came to check on me. He found me shivering in my sleep-probably more from exhaustion than cold, but he covered me up and told me he loved me. And I knew he was worried about this freaking cancer and his mom, and that broke my heart.
Saturday at work was a struggle for me. It was day 3. And typically the worst day. I woke up early so by 7am I had been up 3 hours already. I knew that was gonna hurt me so I just keep telling myself; “make it to noon.”
And when I made it to noon I told myself “make it to 3pm”
So when the clock struck 7:30pm and I had made it a whole 12 hour shift it was a victory over my cancer! A huge victory! One that deserved a pumpkin donut on the way home. Then I crashed in my bed. Hard.

I woke up at 4:30am Sunday and knew it was going to be tough. I was already nauseated. Took a zofran and back to bed for an hour. When I got up to get ready I told myself “make it to 9am when Heather comes in.”
Then I was so shaky I had to wake Brian to drive me to work. Shaky not just from the steroids, but from the chemo. It causes such a reaction within the bone marrow that every bone hurt. My teeth hurt, my legs hurt, my hips hurt. I was just pacing like a caged animal because sitting sometimes helped. And sometimes didn’t. You know how it feels when you work out super hard and all your muscles are on fire and all your nerve endings are firing? That’s how I felt. For hours. By 3pm I knew I was done. My feet felt like I was walking through quick sand and my mouth was dry and tongue swollen. No matter how much I drank. And the cold drinks? Yep-painful. Room temp only. And I’m sure I’ll be kicking my Dr Pepper habit because it tasted like watered down cough syrup, and white cheese like unflavored play-doh! But I had made it 8 hours and we were busy so I felt like I had another little victory over cancer that day too.
Once I got home it was a different story. I put on flannel Jammie’s and got into bed with 2 heavy Sherpa blankets and shivered so hard I thought my teeth were going to rattle out of my head. I loaded up on some Tylenol and tramadol, compazine and even tried a muscle relaxer. I’m allergic to codeine-all forms of it-so the strongest I get is tramadol. Last night was spent tossing and turning. I did sleep for about 7 hours non-stop and I sure needed that. But once awake I ached. And tossed. And turned. A call to the cancer center this morning got me back on track.
Claritin daily to help with the antihistamine reaction going on in my bone marrow. Tramadol every 6 hours-do not get behind! Increase Vitamin D and B and Tylenol as needed. Biotene mouth wash to help with the way my tongue felt and today was much better.
My momma and sis came over and helped clean up the kitchen and pack tees. Brian and Parker waited on me-Parker even vacuumed the floors! And the best thing ever????
KU called with my biopsy results and the 9mm mass is only a BENIGN LYMPH NODE!! No additional cancer!! Woo-freaking-hoo!!
That was the news I needed today. Still waiting to hear about how we’re going to determine if the spine stuff is bony mets or not but for now, I’ll relish in the fact that I don’t have more nasty little bastard cancer cells taking up residence in my boob. Cause I’m working to evict the other one right now and ain’t nobody got time for that!
Sorry I’m all over the place with this post. My mind is truly scattered right now and I’m sure will be for a while. Bear with me.
And I wanted to thank everyone who has reached out -to me, Brian, Hailey, Parker, my family....I know there are no words for this and I know you don’t know what to say. My tight lipped thank you smile response is just that. I don’t know what to say. I want to scream and yell and throw stuff and break things and put holes in walls, but since that might buy me a 96 hour hold just know that I really do appreciate your words-and actions, and emojis and gifs and lack of words. I get it. So please don’t stop. They get me through.

K

A pic of the latest biopsy. Healing nicely. Sorry, but cancer ain’t pretty.


Oh, and some crazy haired kisses from Frank too!

Go big or go home....I’m about done with that motto

Go big or go home.
That’s our motto.

This big was never my idea. I’m going for home from here on out.

I got home from chemo today feeling great. Seriously. I feel great. I’m sure that will change, but I’ll enjoy the great while it lasts! Brian is sitting on the couch and I see him put his hand on his chest. He says he doesn’t feel good. Heart is fluttering and he feels lightheaded and dizzy and nauseated. I do a little more investigative wifely questioning and find out this has been going on for a few weeks!! And it happened at work today-multiple episodes! Argh!! This cannot be happening. I draw the line.
Ambulance shows up-nothing major on EKG-thank goodness but does warrant an ER visit. Some labs and another ekg later we are now home with a holter monitor on my husband for the next 24 hours and a date with a cardiologist and his primary care doc. In the very near future.
I’m sure this is all stress. My bad news just keeps coming and he’s always been my rock. He feels helpless and he does not like not being in control. Those are all new emotions for him. I’ve only ever seen him upset when it comes to the bald kid’s issues and now me.
I know most all men are like that, and I love him for it. But I cannot handle someone else being sick in this family or I might lose my mind. I’ll stick with losing my hair right now and getting him all better!
Thank you for all the thoughts and prayers our way.
Now can someone find the voodoo dolls of our family and return them to me so I can package them in bubble wrap for the next 50 years???

Ps-chemo went awesome-as awesome as pumping toxic chemicals into your body to kill the cancer trying to kill you can be anyway. No side effects from it. No nausea. Yet. Got some decadron and zofran as pre-meds. My dose of Taxotere and then my dose of Cytoxan. And I have plenty of good stuff to help at home. Took about 4 hours total.
Had a great friend with me and I’m pretty sure we entertained the whole place. Oh-and ran into a fellow TMC mammo tech we used to work with who was there with her husband and had some good long laughs with her too!
Now we are home, eating a delicious dinner that Heather Murphy made for us-yes my vegetarian friend made us a roast. And no, not a tofu roast! Digging in to that and some asparagus and baked potatoes then off to bed!

And the hits just keep coming....

Had a Radiation Therapy appointment today with Dr Melissa Mitchell at KU’s main campus. Really impressed with her—all my female docs honestly! (Girl power!) got lots of really good info regarding radiation treatments. A lot has changed in the 23 years since I went to school and so much has improved. Radiation wouldn’t begin for 3-8 weeks after surgery-which would be 4-6 weeks after chemo so it’s in the future but a lot of other things have changed too and all plans are fluid at this point.

In regard to the hot spot on my bone scan from last week. It was reviewed by KU and they think the one in my pelvis is not really a bony metastasis, however, they feel the one on my t-spine is. With that said, it automatically makes me Stage 4 Breast cancer. BUT there are lots of options-one being a stereotactic Radiation treatment to my spine. A possibly one time, high dose treatment to the one area only. Being stage 4, surgery typically takes a back seat to chemo. In my case, with potentially only one spot-it may not have to.
Unfortunately, the Breast MRI showed the mass in my axially tail is so close to my minor pectoral muscle that part of it will have to be resected to make sure she gets clear margins when removing the tumor. It’s also really close to a lymph node which will also come out. Good news is that the vein is far enough away and the tumor has not encased it.

The MRI also showed a 9mm mass in the tissue of my right breast around the implant. This has to have an ultrasound and probably biopsy to rule out another recurrence. And it has to be done before I start chemo. So guess what I’m doing tomorrow at KU’s Indian Creek Campus????

My case is being presented at KU’s tumor conference next week and I’ll be getting all kinds of really smart people thoughts on how to proceed next. Like I said-it’s all fluid at this point. PET scan likely doesn’t need to be done-but an MRI of my spine instead. Waiting for more smart docs to weigh in and go from there.

I am still a go for chemo on Thursday so please send me all your good juju for tomorrow’s sono/biopsy and chemo and we’ll just go from there!

Thank you for all your love and support!!

K

Some results are in...

Getting an 8am phone call from the cancer center when you’re expcecting to be told of your upcoming appointment is not surprising. When you answer and it’s the voice of your oncologist and she’s apologizing from the start it’s never good. My bone scan showed two areas suspicious for bone metastasis. One is in my mid back area on my seventh thoracic vertebra and the other is in my pelvis on my left inferior pubic ramus. I’d be lying if I said I heard anything else Dr Sheehan said after that. Well, actually processed anything she said. She is going to FIGHT my insurance now to get them to approve a PET scan. A PET can tell us whether these are actual bone spread or something else and there’s a good possibility that they can be an old injury or infection that took the radionuclide and showed ‘hot’.
Either way we did some lab work to check and see what my hormone levels are, as depending on them we can start a couple different drugs to help with bone mets in conjunction with my chemo. There are also other options. But regardless, if they are bone mets I will have some sort of lifetime treatment from here on out.

This news shook me to my core. Sucked all the air out of me and made me madder than I’ve ever been at the same time. I allowed myself a good, cathartic cry in the shower then decided that I’m still in this fight no matter what the news is. I read lots and lots of articles and got lots of really good info I’m taking to my oncologist. And info from good, reputable sources like the National Institute of Health and Mayo Clinic. There is lots of info regarding bony spread of breast cancer and we know it’s very likely, but we don’t know for sure that’s what it is yet so I’m not going to put the cart before the horse, but I’m definitely getting it hitched up. This whole recurrence smacked me in the face considering I’ve been ‘cancer free’ for almost seven years with no change in tunor marker this whole time. And if I hadn’t paid attention to my body and the changes happening with my arm numbness and tingling, who knows when we would have caught this. At this point, there is no recommendation for follow up serial imaging in post mastectomy, post treatment breast cancer patients. Read that sentence again. None. No scans at 3, 6, 9 or 12 months, no ultrasounds, no MRI recommendations. Zilch. And I’ll be damned if I’m letting anything else sneak up on me again like this damn cancer did. I don’t want to alarm all my fellow breast cancer sisters, but I sure as heck don’t want any of you in this boat either!

So, it is what it is.
I might have been knocked down with this news, but I’m not out.
Keep the prayers coming friends. Prayers that BCBS will approve the PET scan or I’m gonna start renting our Hailey’s room in the basement as a lovely Midwest B & B. There’s a bed and the other B stands for Booze not breakfast!

Love, hugs and prayers,
K

Ps-my port site looks good though. I can incorporate it into my Halloween costume!

What a week!

Wow, where to start?!?!
I haven't posted for a while because though I had a 'plan', it was vague at best and lots of things still in motion. Since the last post on the 3rd it's been a whirlwind of events; Brian and I, my youngest sister Katie, and Hailey's boyfriend Logan drove down to Fayetteville to spend the weekend with Hailey Jayne. Even though our beloved Hogs lost to Alabama, we got to see a great game inside a gorgeous new stadium that has changed so much since I could look right into the end zone from my dorm room (many, many years ago)
We had a few (too many) drinks at JJ's and lots of laughter with her friends. Thank you to those wonderful people our girl has surrounded herself with while at school who hugged, and cheered and assured me they would look out for her during the next few months. It is hard on Hailey that she will not be here while I am going through all of this crap again, so your love and support for her means the world to us! (especially you Carly!)


Fast forward through 2 weeks of appointments;

chemo education-2 drugs, both crappy with lovely side effects one of which being hair loss. Yeah for no shave November for me-literally, since I won't have any hair to shave. And zero dollars spent on hair products. Only people who know me well will understand what that means....Momma likes her hair products..... But, being that my last chemo was during the spring and summer, I'm definitely going to need to invest in some stocking caps. Bald heads + winter = really, really cold. I slept with a stocking cap on last time.

Met with 2 surgeons-first one bailed (location, possible brachial plexus involvement, artery and vein proximity, implant proximity, etc. Which is just fine with me because I ended up right where I needed to be. At KU with Dr Jamie Wagner. I have to add this woman to my Girl Crush list for sure. She is the bomb! Straightforward, no BS kinda gal. and smart to boot. She gave me so much info and education and my comfort level with her and the facility was like no other. Her plan is chemo first, surgery then radiation. My cancer is highly hormonal, so chemo first will likely not shrink it, but kill it from the inside. The tumor should become necrotic from the inside and not necessarily shrink-which is ok, that's what we want. And chemo should keep it from growing or spreading. IF during my 12 weeks of chemo we see it grow or spread, she will abort chemo and go straight to surgery. Surgery will likely involve a plastic surgeon in case I need to have my implant removed and an expander placed for Radiation. She will also possibly remove the few lymph nodes near the tumor if there is any chance they could be involved. She said they are also starting to see recurrences in the mastectomy flaps and she will check out the thickness of mine and if needed thin them out while there. She also had me meet with the lymphedema Nurse specialist while I was there and have a lymph scan. Very interesting and I am fortunate that with no education or issues before that I still fell within the normal range on the scan. For those non-medical peeps-lymphedema can easily occur when you have a lymph node dissection like I did before in my right arm/side. If obstructed, swelling can occur.
Before I left KU I was set up for a breast MRI. Dr Wagner wanted it primarily for surgical planning and to see if where the mas is in relation to other lymph nodes seen on the ultrasound. And it was scheduled for 2 days from then. Woah, sister. You might be my new girl crush but I need time to work up to an MRI. Clearly I didn’t have time so it was down a Moscow Mule and a muscle relaxer and suck it up. And if I never have to do another breast MRI in my lifetime I’ll be ok with that. An hour on my stomach, boobs hanging through a plastic tray then squished in place, my arms over my head and noises varying between jackhammers and howler monkeys in my ear the entire time.

Monday 10/22 port placement. My awesome Dad took me to NKCH and hung out waiting for me. While one nurse was starting my IV and another nurse was asking me all the pertinent questions - “do you have an advance directive?” Yes
“Have you been out of the country recently?” No
“Have you fallen recently?” Not while sober.
Dad giggles. IV starting nurse laughs out loud. Question asking nurse does a double take and doesn’t exactly know how to react. Then my Special girls Heather and Kristen show up to whisk me off to my most favorite person in this whole procedure....Nurse Jenny with the good drugs. A little of this and little of that and before long my favorite smelling Radiologist TW had my port in.

Wednesday 10/24 Bone Scan. A nuclear medicine study where I got injected with a radionuclide and then scanned to see if any ‘hot spots’ show up. Or areas of potential bone metastasis, or spread of the cancer to my bones.

Now that all of those tests are done and I have my port, im scheduled for my first chemo treatment next Thursday November 1st. I suppose it’s as good a way as any to start the month.
I have no idea how this chemo is going to affect me, other than the for sure hair loss....so if my counts are low I won’t be working or out in public where I could be exposed to sickness so please keep that in mind if you want to visit. I have a friend starting a meal train soon, and I’ll share that link on here as soon as it’s set up. We are still selling t-shirts so if you want one message me or Brian. And my baby sis Kate has a crazy plan to raise some funds for us while I’m off that will be a whole lot of fun....I’ll keep you posted on that!
I can’t thank everyone enough for the rallying around us and the love you have surrounded my family with. I’m still reeling a bit from all of this and fluctuate daily between being mad as hell and wanting to curl up in a ball and cry. I love the texts and emails and cards and messages and gifts and they get me through each day so please don’t be afraid you’ll upset me.

This was the really abridged, Cliffs notes version of the last couple of weeks and I haven’t even touched on the wonderful time we spent with Brian’s Dad, bother and sister and families. I can tell you that they are all pretty special people and we are so lucky that God put them in our lives right now. And since Kellen makes a way better Moscow Mule than any bartender I’ve ever had make me one, he’s welcome at our house anytime!

Will update more this weekend!
Love, hugs and prayers
K

Aggressive is the name of the game

Met with my awesomely amazing Oncologist today and her not being her usual chipper smiling self put me on guard right away.  I breezed through the last 6 years and this recurrence makes her nervous which in turn makes me a nervous wreck. But I wouldn’t want any other Oncologist guiding me through this so down to business we got.
Went over pathology and I am ER+ PR- HER2 negative. Which makes it a highly hormonal cancer.
My prior pathology was ER/PR+ and HER2 negative so a little change, but still similar enough that they are calling this a ‘localized recurrence’. Localized because (thank goodness) it’s confined to the small area of 1x2cm mass found in my axilla.  CT scan last week shows no evidence of spread anywhere else breast cancer tends to go. And I had a brain MRI recently so we know nothing is there either. Literally, nothing says my husband.

Plan put into action. Aggressive plan.
PET scan to eval for any other possible lymph node involvement and to serve as a baseline.
Surgical eval to get this thing out.
PICC or Port placement for chemo. Yep-gotta do some Cytoxan and Taxotere.
And those are the hair losing kind so, at least I just ran out of hair spray and have no immediate need to purchase anymore.
Radiation Oncology consult. Yep-she wants to kill anything left with some good old radiation. I’m not sure how I feel  about this yet and have lots of questions for the doctor.
In the meantime started on Arimidex to help suppress the hormones from my one ovary and some gabapentin for the nerve pain where the mass is in my arm causing numbness.
Oh, and in the not-so-distant future, I get to have a hysterectomy. Most importantly I need to have my one remaining ovary yanked.


Regarding surgery, I’m nervous about needing to take my right implant out to get clear margins and then have to keep it out for radiation. I’m going to ask if I can at least have my implant to hang on to. Since I’ll be lopsided, I want to be able to at least tuck it in my sports bra for uniformity. I mean, there’s a lot of blood, sweat, tears and surgeries that went into getting that thing-I’m not giving it up without a fight....besides, it has a serial number that can be traced back to me, and I sure don’t want that thing ending up at a crime scene that implicates me! ;)

I have a chemo education appointment next Monday and am waiting on all the insurance approvals for everything else, but we will be moving forward quickly.
All in all, I’m thrilled to have a plan, but I’m absolutely terrified of it.
I’d be lying if I said I wasn’t. I’m worried about the kids, Brian, my family and friends, finances, work, the boutique, etc. all the stuff I know I have no control over, but can’t help being worried about. So bear with me, laughing helps me deal. And tears will be shed. And I’ll take all the prayers and hugs I can get right now. Please don’t forget to include my family in those prayers too.
God works in amazing ways, and I firmly believe that Brian finding his Mom, Dad, sister, brother, half-sister and all of their respective families when he did was truly meant to be. God knew I would need Brian and that Brian would need someone to lean on while being my rock. And there they were.
Thank you to my new in-laws for all your support and for being there for him.

Working on a T-shirt design right now. Since FU CANCER will probably be frowned upon in some professional settings, it will be toned down a bit.  But the sentiment will still be the same regardless..

And since I skipped my hair cut and color appointment this week in anticipation of losing it all soon, there will be a shaving party soon.  Before the roots get any worse for sure!  Like Heather said-at least I already know I can rock the baldness!

Thanks for all your offers of help. Once we have a surgery date I will take you all up on driving and babysitting-me and Ethan that is!
Will update when we know more. Going to see Hailey in Arkansas this weekend and spend some quality time with her at JJ’s Happy Minutes!

Love and hugs,
K

It is what it is....

That’s been our motto for quite some time.
It is what it is....
It’s kind of how we deal with all life’s little curve balls. And the big ones. What’s the point of getting upset over things out of our control?  It only makes me a stark raving lunatic and then everyone suffers when that happens.
So, it is what it is. 
Ethan’s in the hospital. Again.
Ethan needs a valve replaced. Again.
Brian needs shoulder surgery. (Only one! Score!)
Kari has breast cancer. Again.
Yep. Again.

It is what it is. 

It all started with some right arm numbness and burning pain shooting from my axilla (armpit) to about my elbow. Sometimes even hand numbness. I’m a right side sleeper, it’s obviously neck pain from late night Netflix binges of Ozark Season 2 and trying to be quiet and hide the light of my laptop to keep from disturbing Brian’s beauty sleep. So I do what any normal person does and I go to my Chiropractor. Who is absolutely amazing by the way. But to no avail, going on three weeks of the symptoms, a few chiro visits, a massage lots of anti-inflammatories, and some expired muscle relaxers I dug out of the medicine cabinet washed down with a dry red, I get no real relief.
Ok, so I have a 3 month follow up at the Cancer Center and figure I’ll mention it to my NP.
 Let’s check it out. So all up in my armpit and right boob she gets. Hmmmm, maybe she feels a lymph node...I had several removed from that side so who knows?  Maybe it’s an adhesion on the muscle or tendon from the 3 major chest surgeries I’ve had in the last 6 years. Maybe it’s....let’s just get an ultrasound and find out. I leave thinking I’ll be doing some physical therapy real soon and it will all be good.
And that’s what I get for thinking. 

Ultrasound on Monday showed a mass in my right axilla.  Near the edge of my right implant.
Mass.  Refer back to my first ever posting of my first breast cancer diagnosis and you’ll know how I feel about that word.  My super fabulous, no bs, sono tech calls Radiologist who comes and looks and says let’s biopsy it. Today. Right now. A little sedation from my awesome nurse and a few passes of a biopsy needle from a great Rad and a bandage and some steri strips and off I go.
I spent most of the rest of Monday in a funk. Napped a lot-cause I’m good at that. And tried to stay off the internet and avoid searches involving the words ‘breast cancer recurrence after mastectomy.’ 

Did you know that the localized  recurrence rate of invasive ductal carcinoma after mastectomy is
10-15%?
Well, I do now.

NP from the cancer center called Tuesday evening around 5:15pm and that number on my phone at that time is never good news.

Pathology already shows the biopsied areas were Invasive Ductal Carcinoma.
Yep-I’m in that 10-15%.  Which baffles me because I shouldn’t, I’m not supposed to, had a major bilateral mastectomy surgery with 8 rounds of chemo to follow to ensure, that there was no breast tissue left and if it was we killed it with drugs.
It is what it is. 

If you’re reading this you probably know me. And you know I like to plan.  I need to plan.
Plan A, Plan B and Plan C. And if all else fails, because let’s face it, have you met us?  Plans D-Z.
Plan right now is figure out if this is exactly the same cancer I had before.
Meaning hormone receptors and HER2Neu status. (Lingo for different types of breast cancer and how they respond to treatment-kind of). Because this could affect how we treat it.
CT scan of my chest, abdomen and pelvis happening tomorrow then appointment with Oncologist next Wednesday.
And that’s as far as we’ve gotten for plans.
That kind of makes me more of a stark raving lunatic than anything else.
The dreaded waiting game.

So, that’s all we know for now. I’ll update as we find out more. I’m sorry some of you already know this info and some of you are finding out here. The last 10 days have been an amazing roller coaster of emotions connecting with Brian’s biological family. And the incredible fairy tale that has ensued from the day he made contact.  And we’ve been hanging on to that happiness and joy and as long as I didn’t put this into words it didn’t  exist, right?
Well, it is what it is.
Typically.
But not this time.
Because I beat this bitch called cancer once before, and I’ve got a few tricks up my sleeve too.
So bring it cancer.
But bring it good, cause you’re not getting another chance.