Getting my booty froze....

A couple of weeks ago a friend sent me some info on a procedure called Osteocool, a radiofrequency Ablation that is used to ablate tumors. She is working just outside of DC, so recommended I check around locally to see if anyone does it here in KC. She also said they are seeing great results with pain control.

RFA involves drilling a hole into the bony tumor, then inserting a probe that is heated up so hot it essentially erodes away the tumor. And by hot I mean 150-190 degrees hot.

So I text my friend, and IR Tech at KU, and asked her if they did this procedure there. And they do!! So, had my CT sent to the docs at the main campus and they called last week to tell me they reviewed them and felt they could help me out!
Today I had a consultation with Dr Brandon Custer, an Interventional Radiologist at KU. And though I had thought I would be discussing having the Osteocool RFA done, he actually feels that doing Cryoablation is more appropriate. Working the same way as RFA, except instead of using heating probes, they use cooling probes. And by cold, I mean -40 degrees. Yes MINUS 40 degrees. Think KC has been cold lately, well......this is cold.
Same process of drilling a hole and then inserting the probe. As they cool it down, it will form an ‘ice ball’ around the tumor essentially killing off the cancer cells. Yes, you read that correctly-killing. the. cancer. cells.
This is all done under CT guidance (go CT!) and they can actually SEE the ice ball form. I think I might ask one of the techs to take my phone and record that for me!? I mean, help a fellow CT sister out!?

Why cold instead of heat? He said the cooling is better for that area and he’s the expert so I’m game!
Apparently they need at least a 1cm area around the tumor to make sure they don’t affect surrounding tissue and muscle and nerves and all that good stuff and my sciatica nerve is 1.8 cm away from my ischial tuberosity. Whew!
The pic in this blog is of a pelvis, and the red areas are the ischial tuberosities-or your ‘sit bones’. Because they are literally the bones in your butt that you sit on-see other pic.

I will be under General Anesthesia due to the painful nature of it, but it’s an outpatient procedure so I get to go home that day. Oh, and the day we are doing it is none other than Valentine’s Day. Yep-Brian said “here’s your gift honey, getting your booty frozen!”
Did I mention they will be going in from the back-so yes, through my hiney.
Even better news is that they are seeing good results from people who have 8/10 pain score going down to a 2/10 and lasting longer than Radiation Therapy. Since I’m currently living daily at about 6-7/10 and on some days even 10/10, that is music to my ears! When asked how my pain is, the easiest way to explain it is like when you’re 9 months pregnant and that baby is sitting on your pelvis and you feel the pressure on your hoo-hah. And like I’m constantly sitting on a hard bicycle seat that I can’t quite get comfortable on.
PLUS-it’s not radiation to my pelvis and other surrounding structures, AND if it starts to hurt again in a year or so or more mets come back-they can do it again!!

I’m so excited to have this option available over Radiation Therapy-but if needed we could essentially add that in too. Though it doesn’t sound as if that will be needed.
And I’m so lucky we have KU right here in town that has National Cancer Institute designation. One of only 70 facilities nationwide.
I’m blessed to have caring and smart friends who thought of me for this-thank you Sheila! And I’ve always said “it’s not what you know, it’s who you know” and having my dear friend Rose as a KU IR Tech who helped facilitate all of this for me with her docs! Thanks Rose-it’s sucks you’re off that day, you don’t get to see my booty freeze.

In the meantime I started my Kisqali today and so far, so good. I’m headed to bed and have to work all weekend so I’m hoping not to have any side effects. Goodnight and sweet dreams!

Much love,
K

Moving along....slowly....

Y’all may hate this weather, but I am personally looking forward to putting on my flannel jammie pants tonight when I get home from work and not taking them off again until I have to get ready for work Monday morning. (Ok, I might shower and put on a clean pair of flannel jammies) I’m gonna snuggle up with a bottle (or 6) of dry red wine and my dogs, a fleece blanket and the remote. And I’m not leaving the house.
I am mentally exhausted this week from all the phone calls and emails and doctor’s visits and research I’ve done this week.
I have learned a lot.
A lot I didn’t really want to know.
The statistics are not great with my new diagnosis.
The median survival rate for metastatic breast cancer is 3 years.
Yes, that number is 3.
36 months.

It takes my breath away and makes me tear up even typing those numbers.
Did y’all know I’m 48? And will be 49 in April.
Cancer doesn’t care.
It doesn’t care how old, I actually prefer young, I am.
Or that I have 3 children.
And a husband.
And family.
And friends.
And a career.
And dogs.
And it wouldn’t care if I was single and childless and petless and friendless.
It doesn’t care that I make a decent living.
And it wouldn’t care if I was rich.
It doesn’t care that I have amazing people in my life and that I know God.

The one thing cancer does best is the one thing we wish everyone did.

Cancer does not discriminate.

The one attribute we hold people and employers and rules and laws to....it does better than anyone.
And dammit does that make me mad.
Not that I deserve NOT to have metastatic breast cancer just because of those things I listed above. Or that I wish cancer on a group of people I deem unworthy. But after 2 times already.....could it just have skipped me this one time???
But then who would that unlucky person be, if not me?
I certainly don’t wish it on a child.
Or a young adult just starting their life.
Or a new mom.
Or new dad.
Or that sweet lady at the grocery store.
Or that lovely gentleman at the drug store.

I honestly just wish cancer didn’t exist.

That we could discriminate against it;

“Nah, I don’t like you Stage 4 Metastatic Breast Cancer because of how you look, so move along. No place for you here. “

If only.

That was my 5 minute pity party for myself today.
And yours too.

Wondering what I mean by that?
A long time ago, and I mean like 15 years ago when Ethan was born, long before even my first breast cancer diagnosis, I realized I could spend all day feeling sorry for myself, or my situation, if I wanted. And believe me, some days I wanted to. Or I could spend 5 minutes a day doing the crying, screaming, what-if, why me, life is unfair pity party and then still have 1,435 minutes left in that day to do something productive. And when you only spend 5 minutes focusing on the negative each day, there’s a whole lot of good you can find in the remaining 1,435.

So I give myself 5 minutes each day.
Sometimes it’s in the morning when I wake, but before I’m out of bed.
Others it’s not until I lay down to try and sleep after a trying day.
Then, there’s the days it hits me smack dab in the middle of lunch.
Or dinner.
And some days, yes there are some days, that I don’t feel sorry for myself at all.
There are actually lots of those days.
Yes, even now.
Because I give myself that little allowance of time doesn’t mean I need it everyday. I only do because I know myself well enough to know that if I get upset or let the tears start, and I haven’t already got a plan in place and a limit on self-pity, I could be an emotional, hot mess dishrag and cry for days.

5 minutes.
And then it’s time to get up, get my smile on and move forward.
Try it on those tough days.
We all have them.
It really does work.
And I need people to realize that I don’t need longer than 5 minutes to hash over my latest dilemma with you.
You can cry when you see me, I get it. I’m amazing and this will likely kill me.
You can’t live without me, I mean who really could?
And you’re hurt and angry just like I am.
And I will probably cry too.
Because, again, emotional hot mess dishrag here.
And then I will probably crack a completely morbid joke about giving out shots at my funeral as you walk in.
(Ok maybe more appropriate at the visitation)
5. Minutes. Up.

One thing I cannot do,
Will not do,
Do not have the strength for,
Is to hold anyone else up during this ride.

I have my kids and husband and a very large family-y’all are included in this too-that I need to help gently guide down this shitty, bumpy path to eventual life without me.
And my own mortality to cope with.
So, I’m sorry if that seems selfish, but in simple terms, I just don’t have the time or energy.
By all means, I want you on this journey with me, and I am so thankful and blessed for all of the amazing support I have. And I will share with you every step of the way.
Ask your questions, there are none that scare or offend me. Many questions people have asked in the last couple of weeks have helped me move down paths I wouldn’t have necessarily thought of.
So don’t get caught up in the sadness of it all, take your 5 minutes like I do and then let’s move forward together.

And in moving forward, I have somewhat of a plan. And this may all end up scrapped and tossed out the window and changed ten times in the next month. But when you’re dealing with a terminal illness, that’s ok! Treatments change and minds change.
And situations change.

•On Tuesday 1/21, I am receiving my teaching education on the three drugs I mentioned in my previous blog; the Xgeva, Faslodex and Kisqali.
•I had a simulation planning CT to set up the potential fields of radiation for my hip.
•What I’m most excited about is that I have a consult with a KU Interventional Radiologist next Friday to see if I’m a candidate for a procedure called the Osteocool. This is a radiofrequency ablation done to bony lesions that is showing some pretty good success in regard to pain relief.
I will know more next Friday and share with you what I learn.
I can’t thank the people who sent me this info AND helped facilitate it enough.
Options are important to me.
And pain relief is coming in high priority right now too.

I’ve also learned that with Stage IV Metastatic Breast Cancer, I’ve kind of become the black sheep of the cancers.
There is far less funding and research on Stage IV MBC. And it is the reason 40,000 women die annually.
Cancer still in the breast
DOES NOT KILL YOU.
Read that line again and ask me if you have any questions about what that means....
That is why early detection is key.
Anywho-it’s like I’ve already got one foot in my grave. No sense of urgency in getting my meds figured out last week, no real help in regard to medication for my pain that I can actually take AND go to work.
CC Nurse:”Oh, we called in the Morphine for you”
Me: “ I can’t take morphine and go to work”
CC Nurse: “you work?”
Me: “yep, full time. 12 hour shifts. On my feet. In healthcare actually. Morphine not compatible with any of that”
CC Nurse: silence.
Ahem.

And not a good response from the Radiation Oncologist I met in regard to not starting Rad Therapy until my consult with the IR Rad about the Osteocool.
“Then I’m not sure why you’re here anyway.”
“We do this all the time and it’s fine”
“You can’t have both and if you can I’ve never seen any literature on doing it, I’m not sure there is any”
Sorry, I like options. And I have some.
Ps-time to improve the bedside manner. Literally bedside while I was lying in the Sim room CT scanner.

Did I mention my 5 minutes sometimes includes head shaking and big sighs....

And as much as I adore my Oncologist, I am seeking another opinion as to course of treatment. It may end up being exactly the same. Or someone may have some magic fairy unicorn glitter they can sprinkle on these bony mets and make them disappear and I need to hear that option too.

So this weekend I welcome some brainless TV binging with the fam, 2,870 minutes of gratefulness, and of course
a Chiefs WIN!!!


Always much love,
K

2020....in with a big bang

I had predicted 2020 would not be boring for us for long, I just didn’t expect it to happen before mid-January. And I would take boring over the news we got last week any day.

It seems as if cancer isn’t done with me.....my tumor marker (Ca 27-29) has been in normal range since I finished chemo in January. Normal being anything under 38. In August it was actually 24. This lab is not the best lab to be used for recurrence, but it’s all breast cancer patients have.
Well, in November my Ca 27-29 was elevated at 54. And I moderately freaked out as I had been fighting all the lung/cough/asthma stuff for 5 months by then. But the cancer center was convinced it was elevated because I had shingles a couple weeks prior to having it drawn and they suspected that had caused it to be up. So the plan was re-draw a month later. A month later was December 26th and it was again elevated. Only this time it was 74 and clearly showed no signs of being a false positive.
So we decided to start with a CT of my chest, abdomen and pelvis, which would basically cover any areas in question.
The results are not good, as it appears my breast cancer has spread to my bones. To my spine and pelvis/hip area to be specific.
My upper back-thoracic area has 3 vertebra with lesions at T4, T7 and T9. And my in my pelvis my ischial tuberosity (think of the bony part of your butt cheek) has a pretty good size lesion that is 5x2 cm. Which explains why my hip has been hurting for several weeks. I felt like I had strained it doing some workouts and so I kept doing some stretching and yoga thinking that would help-little did I know!?

I haven’t seen the Oncologist yet, but she called me and we briefly talked about my options;
because I have significant pain in my hip that is not going to go away since it’s being eaten up with cancer, we are going to do some radiation treatments to help control the pain. Hopefully as early as next week with meeting the Radiation Oncologist and getting that started.

The drugs I’ll be starting are
Xgeva- a shot which is to help prevent fractures in patients with bone cancer and bone diseases.
Faslodex-also an injection used in estrogen positive breast cancers, also to help bony spread.
Kisqali-a pill used in conjunction with the Faslodex for metastatic breast cancer.

That’s what we know so far. I’m working and kind of holding it together. Dr Sheehan is trying to come up with something that I can take for the hip pain that’s not narcotic-so I can work.

I’m sorry if this is how some of you are finding out-I needed to tell my kids and family and that took everything in me to do it without crying.
Which I did anyway.
I’m mad and angry and in disbelief and pissed and want to scream and throw things.
Which I plan to do.

So for now ‘it is what it is’.....
Our familiar motto.
Much love to you all, we will keep you updated as we find out more in the days to come.
I might be down, but don’t count me out, people with breast cancer bony mets can live for years, and I assured my husband he can’t get rid of me that easy. There are lots of great drugs on the market and new advances being made all the time to stop this terrible disease.

And I plan to continue to be a survivor.