I just realized I hadn’t updated my blog since I was in the hospital. Sorry-with the holidays and feeling crummy 23 out of 24 hours every day and my ‘chemo brain’ (believe me-it’s real!!) I feel like I haven’t had time to do anything.
So, here’s the highlights:
In case you hadn’t heard, drumroll please.....
NO METASTATIC DISEASE!!!
My hard fought for PET Scan showed that the areas in question on my back and pelvis were in fact not cancer spread but could be areas of old injury or arthritis.
BEST NEWS EVER! It was all I needed for Christmas, New Years and all my future birthdays!
And let me tell you, when you start thinking about having Stage 4 cancer and a lesion in your back, your thoughts of future birthdays changes dramatically. The median survival rate for stage 4 breast cancer is 55 months.
Yep, take that in....roughly 5 years.
My oldest would just likely be getting or recently married, maybe even starting a family.
My middle son...wait, who knows where he’ll be in life, but anywho...
And the youngest? Yes, still at home and completely dependent on me. And now my husband. Alone.
And my husband. Well, we know he’d never survive without me. ;)
All the things I would miss was really beginning to take a toll on my emotional health. I was sad, and angry and anxious and mad all at the same time. I started planning the remainder of my life in blocks of a few months at a time. And that was all dependent on actually feeling well enough to enjoy any of it.
I can honestly tell you that if we had found out it was metastatic disease, Brian was going to retire as soon as he could and we were taking off to cram all the things I ‘needed’ to do in five years.
And of course I began to realize that no matter how well I planned any of it, 55 months was simply not long enough to accomplish whatever it is I was put here for -still figuring THAT out BTW....
And I was mad. Angry. And if I talked about it I teared up. And how do you tell your kids that?
You don’t.
You put a smile on your face and deal.
You nod and smile and tell everyone you feel fine when you’re barely hanging on and want to scream at the sky.
You put makeup on when you go out to hide the eyelashes and eyebrows you’re losing and the toll the chemo is taking on your skin.
You try to keep everyone else around you from falling apart when you’re the one in pieces on the inside.
You pray and pray and pray some more and reaffirm your relationship with God.
You start repeating your go-to mantra
“It is what it is.”
“I can do this.”
No, I HAVE to do this.
And it’s exhausting.
My time sleeping and in bed was increasing. Because if I was asleep at least my brain was resting from the constant noise inside it.
So that should tell you how relieved I was to get that good news. I mean, the noise in my head is still there and the thought of this coming back a third time still haunts me, but I can at least put that on hold right now and fight the battle in front of me.
Speaking of...
I’m at my last chemo right now!!
Woo-hoo! We did cut my dose down 25% to hopefully keep the bad side effects at bay. After my third dose I was terribly sick again with fatigue and nausea and shortness of air and fevers and all that crap that I barely avoided another hospitalization. Though I did end up with a CT to rule out a pulmonary embolism. Thank goodness that was negative!
With the good news of no mets, I was able to meet with my amazing surgeon and set a surgery date!!
February 4th is the big date to get this shitty tumor out of my body!! We did find out that the chemo has shrunk this thing drastically-so Dr Wagner will be taking part of my pec muscle out with the tumor and any axillary lymph nodes that are still there. If there are any lymph nodes I will end up with a drain after surgery and if not-no drain. I’m good either way-I just want anything in there that could come back to haunt me to be gone this time for good!
More good news-my implant gets to stay for radiation after my surgery!! Then, if it changes shape from the surgery and radiation, or I’m just not happy with them they can be traded out in the near future too! Insurance is gonna love me this new year....
We are heading to St Charles this weekend for a belated Christmas celebration and just fun family get together with Brian’s family that we are all looking forward too!
Hailey is in Chicago with Logan having a blast. Parker has been extremely helpful at home with the bald kid and me.
And the bald kid has been healthy! He was fighting a nasty cough and some congestion he just couldn’t get rid of, but we got him all squared away with his inhalers and essential oils and some immune stick we use on his chest. Keeping him out of the hospital was my goal while I was on treatment and we have succeeded! Though on a funny note, I’ve completely failed in my other aspect of parenthood as Ethan’s first day back to school was today.
Or supposed to be.
Guess who didn’t know and therefore didn’t get the bald kid up until 10am??? Yep, mom fail. Oh well...
Sorry for the long update. Promise to post more in the new year. We had a fabulously low key holiday complete with some awesome food, the hilarious great big ball of glory game, a game of Left/Right/Center that my starving college student nephew won, and a completely hysterical and inappropriate game of Cards Against Humanity with my Mom, kids and my 14 year old nephew!!!
Thank you again to everyone who helped out and showed up for the Head shaving event. It was wildly successful and help put my worried mind at ease.
I truly have the best tribe in my corner and couldn’t do this without you.
From the gifts to the donations and the PTO donations-its all so supremely humbling. We will definitely be paying forward all this kindness shown to us.
My best to you and yours in the upcoming year. Make the most of it. I learned this year-late in the year but never too late in life to make each day count. Because believe me when I say how quickly your life plans can be altered in an instant and you don’t want to have any regrets!
My main New Years Resolution is to beat this cancer AGAIN!
Got lots more I’ll share with you soon!
Love, hugs and prayers,
K
Wednesday, January 2, 2019
Saturday, December 1, 2018
A big reminder to take it easy....
I started feeling kind of crummy on Thursday-just a little worn out and easily tired out doing anything. Friday I felt pretty bad-mostly like I was getting a cold-stuffy nose and headache.
Friday night I went to bed not feeling too terrible after taking some Tylenol sinus stuff. Well......woke up in a cold sweat with a fever and chills and knew it was more than a cold. It’s also day 10 since my chemo. Which means my counts are likely at their lowest. Called the cancer center and awesome Dr Allen booked me a room at the Inn. The NKCH Inn.
Labs, blood cultures, chest X-ray, fluids and antibiotic later.......and I’m terribly neutropenic. My white blood cell count is .1 on a scale of 4.5-11 being normal. Sine my wbc count is so low it doesn’t even take a cold to make me sick or have a fever. Just being this neutropenic can cause all those symptoms.
They are going to start me on a daily injection of Neupogen a white blood cell booster to help combat the low counts.
I’m resting nicely here and have complete control of the TV so I’m good.
If you come visit YOU MUST BE ILLNESS FREE! Even if you just think it’s a cold or have been around someone ill you can’t be around me. At all. Now is my cue to quarantine myself and wear a mask at all outings so don’t be surprised.
I love ya, but your germs can literally kill me. I have zero immune system right now and even with the shots it will take a couple days to get my counts back up. So I’m here at least through Monday.
Thanks for your love and support! Will update later if anything changes!
K
Friday night I went to bed not feeling too terrible after taking some Tylenol sinus stuff. Well......woke up in a cold sweat with a fever and chills and knew it was more than a cold. It’s also day 10 since my chemo. Which means my counts are likely at their lowest. Called the cancer center and awesome Dr Allen booked me a room at the Inn. The NKCH Inn.
Labs, blood cultures, chest X-ray, fluids and antibiotic later.......and I’m terribly neutropenic. My white blood cell count is .1 on a scale of 4.5-11 being normal. Sine my wbc count is so low it doesn’t even take a cold to make me sick or have a fever. Just being this neutropenic can cause all those symptoms.
They are going to start me on a daily injection of Neupogen a white blood cell booster to help combat the low counts.
I’m resting nicely here and have complete control of the TV so I’m good.
If you come visit YOU MUST BE ILLNESS FREE! Even if you just think it’s a cold or have been around someone ill you can’t be around me. At all. Now is my cue to quarantine myself and wear a mask at all outings so don’t be surprised.
I love ya, but your germs can literally kill me. I have zero immune system right now and even with the shots it will take a couple days to get my counts back up. So I’m here at least through Monday.
Thanks for your love and support! Will update later if anything changes!
K
Monday, November 26, 2018
And the stockings were hung by the chimney.....with Frank....
It was a low key weekend for me, and the chemo still kicked my butt.
Friday was good-I worked 11 hours and that was all I could muster. Saturday Brian treated me to a pedi from Annie and Alex at The Nail Place-they are the best and totally pampered me! Go see them for your nail needs! Cause if I could wear the gel nails to work they’re the only place I’d have them done!
Then we lunched at Noodles & Co and picked out a REAL Christmas tree! We haven’t had a real tree for years and I love one. This year the hubby gave in and the kids and I picked out a lovely one. Now, as far as decorating the tree.....not quite done....but Hailey and Logan and Parker did get some stuff up.
Then the Jaros family brought us a delicious dinner.
I woke Sunday and took all my meds but still spent most of the day in bed. The chemo causes such a reaction in my bone marrow that my hips and back and legs hurt so bad that I couldn’t ever get very comfortable. And the nausea, though better, was still there and I just nibbled all day long to combat that.
Today my counts were super low so I stayed home from work and slept. I can’t be exposed to anybody’s icky germs while my counts are low so if I work tomorrow I will be the masked/turbaned CT tech....
Hailey got stuck here (yeah!) and her boyfriend Logan couldn’t get out to Chicago until today so my house got a few more decorations up and I got to spend the time with these amazing kids.
All the while having my house cleaned because we have the best neighbors/Bunco group EVER! The ladies I play with are so nice they have pre-paid for 7 months of housecleaning for us! Talk about an incredible gift!! I don’t get teary-eyed over much, but when Sandra presented me with that card, the waterworks started! I can’t thank you all enough! To not have to worry about the dust and the bathrooms sure eases my mind.
We are so close on the Go Fund Me and Katie will be enjoying her last week of hair in Vegas this week so let’s push for that last $875 so she gets to come home to be the bald Medic!
The meals, the cards, the gift cards, the prayers and the good thoughts are helping. I know I have an entire army in my corner and it gives me strength.
Chemo #3 is on 12/13 and I’m hoping to have fewer down days between now and then, but we’ll see. Ya know that saying about making plans.....we learned long ago to take it all in stride and this is no different. I just wasn’t blessed with the patience gene.
If you are out and about this week please be safe-some of us HAVE to go to work in this and if you’re out doing stupid shit chances are you’ll see one of us. So don’t check your mail, don’t go to the store, don’t shovel the walk and for Fox sake leave the paper. If you have a teenage child please send them to do those things for your elderly neighbors. Every year we have someone slip and fall and end up with a head bleed for those very things and it’s simply not worth it.
Now I’m gonna cozy up to the fireplace where the stockings were all hung with care and Frank is loving the heat.....
love, hugs and prayers
K
Friday was good-I worked 11 hours and that was all I could muster. Saturday Brian treated me to a pedi from Annie and Alex at The Nail Place-they are the best and totally pampered me! Go see them for your nail needs! Cause if I could wear the gel nails to work they’re the only place I’d have them done!
Then we lunched at Noodles & Co and picked out a REAL Christmas tree! We haven’t had a real tree for years and I love one. This year the hubby gave in and the kids and I picked out a lovely one. Now, as far as decorating the tree.....not quite done....but Hailey and Logan and Parker did get some stuff up.
Then the Jaros family brought us a delicious dinner.
I woke Sunday and took all my meds but still spent most of the day in bed. The chemo causes such a reaction in my bone marrow that my hips and back and legs hurt so bad that I couldn’t ever get very comfortable. And the nausea, though better, was still there and I just nibbled all day long to combat that.
Today my counts were super low so I stayed home from work and slept. I can’t be exposed to anybody’s icky germs while my counts are low so if I work tomorrow I will be the masked/turbaned CT tech....
Hailey got stuck here (yeah!) and her boyfriend Logan couldn’t get out to Chicago until today so my house got a few more decorations up and I got to spend the time with these amazing kids.
All the while having my house cleaned because we have the best neighbors/Bunco group EVER! The ladies I play with are so nice they have pre-paid for 7 months of housecleaning for us! Talk about an incredible gift!! I don’t get teary-eyed over much, but when Sandra presented me with that card, the waterworks started! I can’t thank you all enough! To not have to worry about the dust and the bathrooms sure eases my mind.
We are so close on the Go Fund Me and Katie will be enjoying her last week of hair in Vegas this week so let’s push for that last $875 so she gets to come home to be the bald Medic!
The meals, the cards, the gift cards, the prayers and the good thoughts are helping. I know I have an entire army in my corner and it gives me strength.
Chemo #3 is on 12/13 and I’m hoping to have fewer down days between now and then, but we’ll see. Ya know that saying about making plans.....we learned long ago to take it all in stride and this is no different. I just wasn’t blessed with the patience gene.
If you are out and about this week please be safe-some of us HAVE to go to work in this and if you’re out doing stupid shit chances are you’ll see one of us. So don’t check your mail, don’t go to the store, don’t shovel the walk and for Fox sake leave the paper. If you have a teenage child please send them to do those things for your elderly neighbors. Every year we have someone slip and fall and end up with a head bleed for those very things and it’s simply not worth it.
Now I’m gonna cozy up to the fireplace where the stockings were all hung with care and Frank is loving the heat.....
love, hugs and prayers
K
Thursday, November 22, 2018
Happy Thanksgiving and Chemo #2 done!
Happy Thanksgiving all!
Today was a great day spent with family and friends and delicious food.
Thanks to my sister Kim for hosting at her house, all I had to bring was the ham (courtesy of Em Chamas-the best) cheesy potatoes and sangrias! I was able to eat a plateful and then promptly took a nap.
Chemo #2 was yesterday and we tweaked a few things with my medicines in hopes that I will have less days of feeling completely crappy this time. Though the effects are cumulative, there are still some wonderful drugs out there to help minimize side effects. My counts were all good except my white count was markedly elevated. It was up to 22.8 on a normal scale of 11 being the high end of normal. So they suspect one of two things: my bone marrow jumped in to overdrive from memory of my chemo years ago and started rapidly producing white blood cells in response to the chemo. OR the more likely that I was exposed to something in the last few days and my body is trying to fight it. Hopefully the latter is not the case because now my counts will take a huge hit and if I’m already sick I would likely end up in the hospital if I spike a fever. Prayers for the first one and my white blood cells are just gearing up for battle!
Hailey was home to join me and my friend Heather too-it helps pass the hours with laughs. They did put us in a private room once they saw my company....does that tell you how well they know me or what!?!? Scheduling at the cancer center is still working on getting my PET scan approved so we can see if this spot in my t-spine is metastatic or not. They at least asked for some more info to re-evaluate so maybe we are getting somewhere. I’m trying to be patient and I know we don’t need the answer today or tomorrow or even next month. But I would really like to know since it can alter my surgical course if it truly is a met.
Planning to work tomorrow so I’m hitting my bed real soon. But not before I eat a piece of pumpkin pie....
Every day is a gift and a blessing and I hope your Thanksgiving was spent with those you love. In our daily routines it’s easy to take the days for granted and that you’ll always have tomorrow. In fact, we never know what tomorrow holds so live each day like it’s your last and never forget to say I love you, and always eat dessert.
Please remember our first responders, healthcare workers, Police and Firefighters working today. (And with a full moon no less....) and for our military serving and protecting us, most so far away from home and their families.
Lastly-so many thanks to all of you for your support and love. The meals, the cards, the gifts, the donations. It eases my worried mind having you all in my corner.
The Go Fund Me for my sis Katie to shave her head is officially only $975 from the goal!!! We had some check donations come in this week that have pushed us closer. And Monday morning we have a TV interview with McKenzie Nelson from channel 41. (I’ll let you know when to watch for the airing) She did a spot on us last year about our affiliation with the Cure of Ars Gift Gallery and I want people to know how truly wonderful my sister, her co-workers with the KCFD and our community have rallied around us. It was Katie’s idea to do this and I want to recognize her for such a selfless act. It may not seem like much-but ask 10 women if they would cut their hair off for you and I’ll bet you get 9.75 firm No’s. And a huge thanks to all who have been putting together the event for the Not today Cancer head shaving on Dec 5th-my sisters and my mom and step mom and high school friend Tracy have all pitched in.
We have so many awesome raffle prizes and a dozen sports related memorabilia that will be silent auction pieces! Be sure and join us.
Wednesday Dec 5th 6-9 Pm
No. 9 Saloon on N. Oak in Gladstone, MO.
$1 tacos and kids welcome!
Raffle tickets can be bought there that night and we will be pulling the first prize right before the head shaving and continue until the main item of the Mahomes signed jersey and Salvy bat are pulled last! Need not be present to win. We will also start pulling our silent auction winners at 8:30pm.
Thanks again, that pie is calling my name and so is Ethan now apparently ready for bed. He has had an ear infection for a month now we can’t get cleared up so a trip to the ENT is in store real soon since his pediatrician has seen him twice and the antibiotics don’t seem to be doing the trick. Bedtime is the worst when he has to lie flat so there’s a lot of coddling and positioning just right and of course Minions and King Julien....
Oh, and watch for info on my hubs 50th birthday party on Saturday Dec 15th. Getting all the plans squared away this weekend I hope and will post soon! We’d love to have you join us to celebrate! And this year with his newly found family too - so blessed to have them all in our lives!
Love, hugs and prayers
K
Today was a great day spent with family and friends and delicious food.
Thanks to my sister Kim for hosting at her house, all I had to bring was the ham (courtesy of Em Chamas-the best) cheesy potatoes and sangrias! I was able to eat a plateful and then promptly took a nap.
Chemo #2 was yesterday and we tweaked a few things with my medicines in hopes that I will have less days of feeling completely crappy this time. Though the effects are cumulative, there are still some wonderful drugs out there to help minimize side effects. My counts were all good except my white count was markedly elevated. It was up to 22.8 on a normal scale of 11 being the high end of normal. So they suspect one of two things: my bone marrow jumped in to overdrive from memory of my chemo years ago and started rapidly producing white blood cells in response to the chemo. OR the more likely that I was exposed to something in the last few days and my body is trying to fight it. Hopefully the latter is not the case because now my counts will take a huge hit and if I’m already sick I would likely end up in the hospital if I spike a fever. Prayers for the first one and my white blood cells are just gearing up for battle!
Hailey was home to join me and my friend Heather too-it helps pass the hours with laughs. They did put us in a private room once they saw my company....does that tell you how well they know me or what!?!? Scheduling at the cancer center is still working on getting my PET scan approved so we can see if this spot in my t-spine is metastatic or not. They at least asked for some more info to re-evaluate so maybe we are getting somewhere. I’m trying to be patient and I know we don’t need the answer today or tomorrow or even next month. But I would really like to know since it can alter my surgical course if it truly is a met.
Planning to work tomorrow so I’m hitting my bed real soon. But not before I eat a piece of pumpkin pie....
Every day is a gift and a blessing and I hope your Thanksgiving was spent with those you love. In our daily routines it’s easy to take the days for granted and that you’ll always have tomorrow. In fact, we never know what tomorrow holds so live each day like it’s your last and never forget to say I love you, and always eat dessert.
Please remember our first responders, healthcare workers, Police and Firefighters working today. (And with a full moon no less....) and for our military serving and protecting us, most so far away from home and their families.
Lastly-so many thanks to all of you for your support and love. The meals, the cards, the gifts, the donations. It eases my worried mind having you all in my corner.
The Go Fund Me for my sis Katie to shave her head is officially only $975 from the goal!!! We had some check donations come in this week that have pushed us closer. And Monday morning we have a TV interview with McKenzie Nelson from channel 41. (I’ll let you know when to watch for the airing) She did a spot on us last year about our affiliation with the Cure of Ars Gift Gallery and I want people to know how truly wonderful my sister, her co-workers with the KCFD and our community have rallied around us. It was Katie’s idea to do this and I want to recognize her for such a selfless act. It may not seem like much-but ask 10 women if they would cut their hair off for you and I’ll bet you get 9.75 firm No’s. And a huge thanks to all who have been putting together the event for the Not today Cancer head shaving on Dec 5th-my sisters and my mom and step mom and high school friend Tracy have all pitched in.
We have so many awesome raffle prizes and a dozen sports related memorabilia that will be silent auction pieces! Be sure and join us.
Wednesday Dec 5th 6-9 Pm
No. 9 Saloon on N. Oak in Gladstone, MO.
$1 tacos and kids welcome!
Raffle tickets can be bought there that night and we will be pulling the first prize right before the head shaving and continue until the main item of the Mahomes signed jersey and Salvy bat are pulled last! Need not be present to win. We will also start pulling our silent auction winners at 8:30pm.
Thanks again, that pie is calling my name and so is Ethan now apparently ready for bed. He has had an ear infection for a month now we can’t get cleared up so a trip to the ENT is in store real soon since his pediatrician has seen him twice and the antibiotics don’t seem to be doing the trick. Bedtime is the worst when he has to lie flat so there’s a lot of coddling and positioning just right and of course Minions and King Julien....
Oh, and watch for info on my hubs 50th birthday party on Saturday Dec 15th. Getting all the plans squared away this weekend I hope and will post soon! We’d love to have you join us to celebrate! And this year with his newly found family too - so blessed to have them all in our lives!
Love, hugs and prayers
K
Monday, November 5, 2018
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!
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!
Thursday, November 1, 2018
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!
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!
Tuesday, October 30, 2018
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
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
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