Monday, February 25, 2019

Happy Monday!




I shared this 2 years ago when I made it to my 5 year ‘cancer free’ mark. And here I am seven years from the date of this picture with no hair, recent chemo and surgery (again) and getting ready to start radiation therapy. There have been lots of days in the last few months I’ve done the ‘why me’, ‘why again’ and ‘this is so not fair’ game. And not really feeling like participating in this fight. Most days I don’t even want to get out of bed, but I am a total teeth brusher every morning even if I am just going to go right back to bed....something about the sun coming up and needing fresh breath and clean teeth.

Then today I woke up feeling fabulous after a kinda crummy weekend. Parker and his friends took a trip to California, Brian had to work this morning so I had a date with the bald kid and his school bus. Thank goodness Aunt Katie Zishka is his favorite and was able to come over and help me by doing all the pulling and lifting of his not-so-helpful skinny butt. (I’m still at a 10lb lifting restriction with my right arm). And his smile and laugh this morning reminded me why I do get up and fight this crappy fight, even on days I don’t want to.
And all the fabulous ladies in this picture who threw this ‘Bye Bye Boobies’ Party for me in 2012 are just another reminder. And their continued support, love and help. I wish I could add in dozens more faces of the amazing ‘new’ friends I’ve made since this pic was taken-I sure don’t want to leave out any of them and their love and support this time around. Kinda sucks to have ‘old’ and ‘new’ cancer friends, huh? But I do have some of the best. And today is one of those days I just want to say thank you and I love you all and you’re more appreciated than you can even imagine. And no, I haven’t even taken any narcotics this morning.

The sun is out and God is good. Don’t ever take for granted those you love and who love you. Tomorrow isn’t promised and five years seemed like such a milestone just two short years ago, and look where I am today. Seeing this pic in my time hop makes me smile and laugh big at what a night that was and how all these ladies made a really crappy thing O.K. and even funny-if only for a little while. And how they all stepped up again to remind me that I can do this.

Ps-if you look far enough back in my blog you can read about this night-it is pretty funny and I even kept Jenn Wolz out way past her bedtime....

Wednesday, February 20, 2019

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...

Wednesday, February 6, 2019

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

Tuesday, February 5, 2019

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