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
Tuesday, October 30, 2018
Friday, October 26, 2018
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!
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
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
Wednesday, October 3, 2018
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
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
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