I had my Cryoablation procedure Friday and so far so good! Dr Custer was awesome and able to get 2 biopsies of the bone we are awaiting results on. The pathology of these areas likely won’t change the treatment, but it will be advantageous to know exactly what-if at all-the breast cancer has morphed into in my bone. I am beyond happy ( and almost afraid to say) that the bone pain I was having is all but g o n e .
Now, the pencil eraser size hole in my left butt cheek is another story. It hurts like I was kicked by a mule there, and feels like my ass cheek is in a constant contraction when I walk. I’ve been taking it easy (I swear!) and I’ve only had to take 1 morphine so far. But I think I’ll be taking one when I go to bed tonight. As for Operation Booty Freeze-Dr Custer was able to freeze about a 4x3 cm area of the 5x2 lesion on my butt bone. It was sclerotic lesion- meaning that it was hard and thick and typically represents slow growing disease progression. Which is a huge bonus for me!
Now we wait and see, but as long as I’m pain free then we succeed with what we set out to do and I avoided Radiation therapy to that area. Not saying I won’t have to use radiation somewhere down the line-but right now I simply don’t need it! AND, if need be, and the pain comes back, we can always go back in and freeze some more! Brian and my mom and sis were all impressed with Dr Custer and the whole procedure; he went to talk to them after the procedure was over and explained exactly what he had done and answered all their questions. I’m thrilled with what we accomplished and highly recommend anyone in the same situation to research RFA and Cryoablation to see if it can help them. I had to be my own advocate and I am lucky enough to have friends in the field who led me down this path and helped facilitate it. Not one of the doctors or NP’s I have seen ever brought up this option. And in the situation I’m in, I’m leaving no stone unturned and every option is worth exploring.
And maybe that’s why this happened to me. Maybe I was put in this situation to help encourage others to advocate for themselves. I’ve had lots of amazing messages and texts from people that I’m an inspiration. I honestly don’t feel like I’m doing anything other than fighting for my life. And sharing my story along the way. If one person is inspired to take control of their life or illness from what I share-then I guess that’s what I’ve been put here to do.
I’m not strong, definitely not as strong as you all lift me up to be. I go on with the support of all of you. By looking at my kid’s faces daily and having the desire to miss nothing in their lives. And my heart aches that I likely will.
Of approaching our 18th wedding anniversary and planning for a big party on our 20th and doing everything I can to live that long.
I go on when I read a message or a text from one of you, they fuel me to do more, be more, learn more.
And I thank all of you for that support and those words. Usually they make me cry-and that’s my 5 minute Pity Party and then I warrior on because YOU have all lifted me up.
I am not my Stage IV MBC Diagnosis, I am what I do with my life because of that diagnosis.
I told someone who asked how I was doing the other day that I walk in faith and fear daily.
It will be like any other day, I may be at work or home and doing something I do every single day without a second thought and then the fear sets in.
I may not be here in a year.
Doing this job.
Or doing the dishes.
I may not be alive.
Typing that takes my breath away.
And then the faith sets in and life goes on.
I may not be here in a year, but I’m not going to worry about that today.
Life goes on.
And each day is a gift.
So I’ve learned not to take the little things for granted-even doing the dishes.
With that said, life goes on in the life of the bald kid too and we are at an impasse with his spine. We had been hoping to avoid spinal surgery for him, but it’s looking more and more like it’s in his immediate future.
His curve is nearing the 90 degree mark where surgery is needed. He’s at 87 degrees right now.
Ahem.
It is what it is.
We will do what we have to and next week I’ll be calling Dr Schwend and Val to set up some dates for end of the school year.
At this point he is planning to place rods the length of his spine from thoracic vertebra level 3/4 to lumbar vertebra 5. For those of you unfamiliar with the spine, your thoracic spine has 12 vertebra and your lumbar has 5 vertebra....
Yes, that long.
But, it appears he can avoid going into his pelvis at this point and we’d like to get it done while that’s the case.
Why do we do this you ask? What’s the point and benefit?
Well, imagine trying to learn to walk and sit up unassisted with a 90 degree curve of your spine.
Imagine having asthma and a heart defect and having that pressure placed on your lungs and heart from a 90 degree curve of your spine.
That sitting can be uncomfortable and he can’t even tell us.
It’s not something I’m looking forward to, but the benefits will be there when it’s all over.
Brian and I got to be a part of an amazing event today called Project 14.
A friend, fellow KCPD family and a former vendor at our boutique has a dear friend who is a photographer and suggested we partake in her project. Thanks Morgan!
Jeni Lewis of Acres of Hope Photography wanted to do something special in honor of her parent’s relationship during her Dad’s battle with cancer.
These are her amazing words;
Two years ago, I started Project 14. I wanted to take my grief and turn it into something impactful and positive; to not only honor my dad's journey with cancer, but also my parent's incredible love and commitment to each other through it all. Since then, I've had the privilege to meet 28 beautiful couples, and get the opportunity to celebrate their stories. They are strong and courageous, yet incredibly vulnerable and humble at the same time. They have reminded me to look for the GOOD in every single day, and to release my grip on the small things of this world that really don't matter. They inspire me, and I truly love each one of them.
So today, we got to be one of the couples photographed for her 2020 Project 14.
I can’t wait to see her beautiful work of all these couples in the midst of their battle. I know I had a great time today and got to laugh and smile for a few moments with my amazing, supportive husband. And I got to share a little bit about our journey and meet some super cool people.
Ps-Restoration 1894 Event Space on the square in Liberty is absolutely gorgeous!
Please go check out her work on FB and you can even see her previous Project 14 pieces.
I know I was going to post earlier, but I came home and took a nap. Now I’m wide awake and cleaning out the shelves in my closet....and blogging. I should probably go to bed now.
Much love,
K
Sunday, February 16, 2020
Monday, February 10, 2020
A numbers game......
Since my last post I can proudly say Kansas City Chiefs are AFC Champs AND Super Bowl Champs!!!
Such an exciting time for our city-especially the million that showed up in freezing weather for the Victory Parade! Including my children and my poor husband who worked P&L many, many hours last week.
Woo-hoo, vacay paid for!!!
I started my chemo shot and pills and the shot to help strengthen my bones. The combo of all three sent my body into a tailspin-nausea, fatigue and no relief from my butt mets. But after a few days of fluids, switching up meds-now I take an anti-psychotic drug called Zyprexa off-label for the nausea (my husband says is appropriate) and it seems to be working. I now take my Kisqali at night and 30 min later take the Zyprexa and it’s working-I can actually sleep and not feel like I have a brick in my stomach for hours.
There has even been a little relief from the butt bone mets-unless I sit on my hiney on a step stool for hours rearranging the pantry.....not really relief, it just hurts differently. Now, mostly if I sit, I have to shift all my weight to my right butt cheek instead of my left and it helps. Standing and walking isn’t too bad. But hopefully that will all be taken care of this Friday with my Cryoablation.
Happy Valentine’s Day to me!
Today I met with my new oncologist Dr Lauren Nye at the KU Westwood Campus. And I really, really like her. Some of you are asking why I switched Oncologists, especially within the same system.
I do love Dr Sheehan, but since my diagnosis of the MBC, I have yet to sit down and have an appointment with her. All communication has been through 4 different nurses, which, to be honest, kind of just pisses me off. I’ve started a whole protocol of drugs, had an ekg and have had to do my own research and pursue getting the Cryo done all without having talked any of it over with her. I’ve been her patient for 8 years. Apparently I’m just another number there.
Well, I am a number, but not in the way I’ve been treated at that office.
I’m number 48. My young age
I’m number 3. Mother to that many children
I’m number 1 of 8 women who get breast cancer
I’m number 1 of 3 of those women who end up with MBC
I’m the number 1 wife to my husband. (Well....really his #2, but we don’t count that mistake)
And I’m gonna be the number 1 bitch who makes this cancer fight the hardest fight it’s ever seen to beat me.
And that’s where I wasn’t getting the support and answers I need.
Communicating between 4 nurses to get questions asked is unacceptable. So I switched. Because this is my fight and I refuse to fight healthcare providers to get what I need.
Dr Nye is not changing the drugs I am on, she is, however, going to keep giving me my Lupron shot for estrogen suppression, which Dr Sheehan had decided to stop doing.
She is also very knowledgeable in the genetic/genomic realm of breast cancer.
I am BRCA negative, we did that test back in 2012, but I have not had any updated gene testing since then. My spitting game was on today as I filled the little tube being sent away for that gene testing.
The testing will tell us if my cancer is somehow genetic in form or has a connection with another type of cancer like colon. There is a link between the 2 and we need to make sure I don’t carry that gene, and if I do, get that addressed. The testing will also help Dr Nye know if I need a different protocol of drugs at some point.
Insurance does not cover the updated gene testing-so the lab will do some testing and then if they need to do more they will call me with a total if I choose to proceed. Well, with kids and especially having a 23 year old daughter, we will figure out a way to pay for whatever it is they need to do.
I will be getting a bone scan and Chest/Abdomen/pelvis CT every 3 months from this point on. Ironically there are no recommendations to do follow up scans until you’re Stage IV with one foot in the grave.....
These are to track the areas we already know have metastatic disease and to ensure no new ones pop up. The drug protocol I am on right now has been shown to prevent disease progression for 18-24 months. And if they stop working, there’s always clinical trials and new drugs popping up every day. This is also where the results of the gene testing can come in handy, as we can do some genomic testing specific to my tumor type.
She’s also going to ask Dr Custer to do a bone biopsy on Friday when he does my Cryoablation. I asked because my recurrence in 2018 was a little different make up than my first tumor and I’d like to know if this is any different. She said she’s gonna ask really nicely to see if he will.....cross your fingers......
She also recommended a referral to an Oncology Psychiatrist-right now they are about 3 months out with making appointments so I’m on the list. It will help to talk to someone who has no dog in this race, and can be objective.
We’ve also cleaned up our eating and doing about 80/20 whole food and plant based eating. It takes a little while to prep-but I sure feel good after eating the meals I have lately. My bone density study shows some mild osteopenia so I have to take a calcium supplement, but no more than 1000mg per day in pill form, so I need more through my diet. And I love me some homemade hummus that my husband has been making so I’m good with that ‘prescription’.
I was really impressed with Dr Nye and her nurse who walked me through all my upcoming appointments and what to expect in the next few months. My appointment was an hour long, I never felt rushed.
She did a more thorough history than I’m pretty sure I’ve ever had. I will be seeing her every month for at least the next year.
I’m glad I made the switch and even though my protocol had no changes, my heart feels like I’m at the right place.
I was treated like a number here too, only it was like I was their number 1.
Much love,
K
Such an exciting time for our city-especially the million that showed up in freezing weather for the Victory Parade! Including my children and my poor husband who worked P&L many, many hours last week.
Woo-hoo, vacay paid for!!!
I started my chemo shot and pills and the shot to help strengthen my bones. The combo of all three sent my body into a tailspin-nausea, fatigue and no relief from my butt mets. But after a few days of fluids, switching up meds-now I take an anti-psychotic drug called Zyprexa off-label for the nausea (my husband says is appropriate) and it seems to be working. I now take my Kisqali at night and 30 min later take the Zyprexa and it’s working-I can actually sleep and not feel like I have a brick in my stomach for hours.
There has even been a little relief from the butt bone mets-unless I sit on my hiney on a step stool for hours rearranging the pantry.....not really relief, it just hurts differently. Now, mostly if I sit, I have to shift all my weight to my right butt cheek instead of my left and it helps. Standing and walking isn’t too bad. But hopefully that will all be taken care of this Friday with my Cryoablation.
Happy Valentine’s Day to me!
Today I met with my new oncologist Dr Lauren Nye at the KU Westwood Campus. And I really, really like her. Some of you are asking why I switched Oncologists, especially within the same system.
I do love Dr Sheehan, but since my diagnosis of the MBC, I have yet to sit down and have an appointment with her. All communication has been through 4 different nurses, which, to be honest, kind of just pisses me off. I’ve started a whole protocol of drugs, had an ekg and have had to do my own research and pursue getting the Cryo done all without having talked any of it over with her. I’ve been her patient for 8 years. Apparently I’m just another number there.
Well, I am a number, but not in the way I’ve been treated at that office.
I’m number 48. My young age
I’m number 3. Mother to that many children
I’m number 1 of 8 women who get breast cancer
I’m number 1 of 3 of those women who end up with MBC
I’m the number 1 wife to my husband. (Well....really his #2, but we don’t count that mistake)
And I’m gonna be the number 1 bitch who makes this cancer fight the hardest fight it’s ever seen to beat me.
And that’s where I wasn’t getting the support and answers I need.
Communicating between 4 nurses to get questions asked is unacceptable. So I switched. Because this is my fight and I refuse to fight healthcare providers to get what I need.
Dr Nye is not changing the drugs I am on, she is, however, going to keep giving me my Lupron shot for estrogen suppression, which Dr Sheehan had decided to stop doing.
She is also very knowledgeable in the genetic/genomic realm of breast cancer.
I am BRCA negative, we did that test back in 2012, but I have not had any updated gene testing since then. My spitting game was on today as I filled the little tube being sent away for that gene testing.
The testing will tell us if my cancer is somehow genetic in form or has a connection with another type of cancer like colon. There is a link between the 2 and we need to make sure I don’t carry that gene, and if I do, get that addressed. The testing will also help Dr Nye know if I need a different protocol of drugs at some point.
Insurance does not cover the updated gene testing-so the lab will do some testing and then if they need to do more they will call me with a total if I choose to proceed. Well, with kids and especially having a 23 year old daughter, we will figure out a way to pay for whatever it is they need to do.
I will be getting a bone scan and Chest/Abdomen/pelvis CT every 3 months from this point on. Ironically there are no recommendations to do follow up scans until you’re Stage IV with one foot in the grave.....
These are to track the areas we already know have metastatic disease and to ensure no new ones pop up. The drug protocol I am on right now has been shown to prevent disease progression for 18-24 months. And if they stop working, there’s always clinical trials and new drugs popping up every day. This is also where the results of the gene testing can come in handy, as we can do some genomic testing specific to my tumor type.
She’s also going to ask Dr Custer to do a bone biopsy on Friday when he does my Cryoablation. I asked because my recurrence in 2018 was a little different make up than my first tumor and I’d like to know if this is any different. She said she’s gonna ask really nicely to see if he will.....cross your fingers......
She also recommended a referral to an Oncology Psychiatrist-right now they are about 3 months out with making appointments so I’m on the list. It will help to talk to someone who has no dog in this race, and can be objective.
We’ve also cleaned up our eating and doing about 80/20 whole food and plant based eating. It takes a little while to prep-but I sure feel good after eating the meals I have lately. My bone density study shows some mild osteopenia so I have to take a calcium supplement, but no more than 1000mg per day in pill form, so I need more through my diet. And I love me some homemade hummus that my husband has been making so I’m good with that ‘prescription’.
I was really impressed with Dr Nye and her nurse who walked me through all my upcoming appointments and what to expect in the next few months. My appointment was an hour long, I never felt rushed.
She did a more thorough history than I’m pretty sure I’ve ever had. I will be seeing her every month for at least the next year.
I’m glad I made the switch and even though my protocol had no changes, my heart feels like I’m at the right place.
I was treated like a number here too, only it was like I was their number 1.
Much love,
K
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