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Prepared for Emily's site on September 22, 2022.
September 2, 2018
September 2, 2018
Well, it’s official. I start Xeloda tomorrow morning. I will be taking 4 pills in the morning and 4 in the evening, for 7 days straight. I then get 7 days off. I will repeat this pattern for 2 months which will equal 2 cycles. This is to space out my dose because I will officially be starting radiation on Tuesday (yes the same day Ella starts 2nd grade).
Typically Xeloda patients start the it the week before radiation BUT because my trip to New Orleans falls on week 3, that would put me there while actively on X. No thanks!
Since it is cumulative and the more I take the more side effects I can get, I don’t want to be across the nation on a trip alone I paid for, in a room with 3 other girls feeling like complete poop... not to mention traveling to & from. So by delaying one week, yes I’ll probably be knocked down a bit from both X & rads but hopefully I’ll be able to attend my convention in NOLA with no side effects.
I will do radiation at 9am M-F for 6wks with the exception of Sept 10 & 11 where I’ll get a second dose at 4pm to make up for 2 of the 3 days I’ll be in NOLA. After 25 sessions I’ll then have 5 boosts. Those are localized sessions that target the exact area where the lump was removed. If all goes well I should be done with rads mid October. Once I’m done my X dosage will change up to 5 pills twice a day, 14 days on and 7 days off (that’ll be a cycle) for 6 cycles. Estimated end date if all goes well is mid February.
I’ve been preparing for the Hand & Foot Syndrome. Many different creams & salves around the house... after every time my hands get wet. No flip flops, hand tools, chopping, foot rubs - anything that causes extra pressure or friction to my hands or feet. Why? Well that can cause my capillaries to release excess medication which then escapes my body through my palms and soles of my feet. This is why layers of skin can easily become highly irritated, dry and even crack and peel off. Also cotton socks all the time to prevent any sweaty feet which can also escalate the syndrome. No submerging in water or excess heat either. Honestly if I have to do 6mo of this precautionary chemo with all of these rules, I’m glad that it’s during the winter months and not spring or summer.
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Love you!!!! You are so strong!!!! This type of attitude kills cancer!!! I witnessed it with my 8 year old brother over 20 years ago and he is a survivor with an amazing life story and an amazing spirit!!! You have a story that will follow like my brother’s story!!! Hang in there friend and keep fighting!!! God has great plans for you!!!
—Andrea Hunter, September 3, 2018
September 2, 2018
August 13, 2018
So today I had an iron infusion. Basically it’s to prepare my body for the onslaught of Xeloda and radiation. Because X can change my blood levels (white blood count, iron level, etc) and I was borderline anemic a few times while on Taxol, Dr. B just wants to give me the best chance possible. Totally fine and although I had anxiety over being back in the infusion room, it was nice to see the nurses I adore. However even though it was on a Monday - it’s been long enough that I didn’t know anyone in there anymore. So that was strange. Also because I don’t have a port anymore it needed to be administered via IV. And wouldn’t you know, yours truly fainted! No, not from the infusion... I wasn’t even hooked up yet! Apparently it’s a common thing even for seasoned veterans like me. I can’t remember what the nurse called it but there is a name for it. Hahaha oh well! Now to just figure out what my game plan is for Xeloda & radiation!
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August 14, 2018
August 13, 2018
Well, today was a game changer! I met with Dr. B (my oncologist) expecting to just have a post-op check in. We went over my whole case since the recurrence, detail by detail.
When we got to my pathology report, I got a good bomb drop! I didn’t know that essentially the tumor they removed during my lumpectomy was larger than they had anticipated. Yes, I still got 3 narrowly clear margins (the 4th was very clear)... but
the bad part that I just was told was that the growth rate was 93%. My first tumor was growing at a rate in the 60’s... so being at 93% is not good. That freaked me out a bit. She continued to tell me how Dr. C (my surgeon) removed everything as much as she physically could, even some skin... so that’s good. But since I’m Triple Negative (no hormones feed my cancer cells) to lower my risk of another recurrence, she wants to start me on Xeloda. No big deal right?
Well, not so much. Xeloda is an oral chemotherapy pill I will take twice a day for 14 days, then break for 7 days and that’s one cycle. I’ll do 8 cycles over 24wks. Good news is hair loss is rare, bad news is Hand & Foot Syndrome is not rare. It occurs in about 75% of patients. It’s where hands and feet become red, tingly, possible neuropathy, extremely dry skin (think cracked, flaky, and literally peeling off). No fun. Also mouth sores are very common.
Anyway, starting Xeloda right before I start radiation or when I start it is now the plan. When will that be? We aren’t certain quite yet. Once my 4 doctors meet later this week, they’ll hammer out a game plan and I’ll have it next week. Next Monday I also have to go in for an iron infusion to raise my iron levels since Xeloda is known for messing up blood counts and iron levels. I meet with Dr. H (my plastic surgeon) right before the infusion. Wednesday I meet with Dr. WC (radiation oncologist) to go over everything with her as well.
So this game plan that I’ve had for 7mo now was completely thrown out the window it feels and I’ve been left with a rough draft of this new plan. That sucks! It also will push my 3D nipple tattoos into 2019 because we don’t want to add risk of infection or skin reaction to this plan. I was really hoping to be done with all of this in 2017, now 2018... guess 2019 it’ll be!
Which also means we will hit another big hefty deductible. Thank goodness for insurance as this Xeloda on the low end is
$6,000 per each 14 days. For now I will focus on the girls starting school and Paisley turning 5 next week (8/21) because my brain can’t handle much more.
PS: here’s a photo from the Train with Hall & Oates concert!
Em, your amazing! My prayers are with you. This totally sucks. I wish your battle could be over and won. May you receive love and support the whole way and may it lighten your burden. From one momma heart to another💝
—Linda Cereghino, August 14, 2018
You are a strong girl Em! Keep fighting! Thanks for keeping us posted on your journey. Kick cancer's Ass!
—Tanya Merritt, August 14, 2018
I am so sorry the news was not terrific. You are a fighter and survivor! Hugs to you and yours.
—Lois Costine, August 14, 2018
So sorry that you are going through all this. Our disease is not our friend and as such
tries it's best to keep us on edge. Until the enemy is defeated permanently we can only try our best to be vigilant. Just keep faith. As I know there are turns and twists in the journey we never expected, we are stronger than the cancer
—Kimberly ( Gross ) Cummings, August 14, 2018
July 31, 2018
July 31, 2018
So last Wednesday (July 25th) I had my successful port removal & lumpectomy! I was very blessed to have my Pink Sister Jenn Leddin in the room next to me about to have her exchange surgery with my plastic surgeon, Dr. Hu. It was wonderful to have another
friend be in the amazing hands of one of my surgeons!!
All in all the surgery went great and I woke up happy... even made a friend with the recovery nurse (and fellow R+F consultant)! I’ve been pretty sore recovering but nothing a little ice pack & Tylenol can’t handle.
Today I had my appointment with my surgical oncologist Dr. Cetas to review my pathology report and what it means. So... here we go!
Margins were clear, but 3 of the 4 of them were 1mm away from the edge so that’s considered “narrowly clear”. I mean it’s all positive news but I wanted more clear than 1mm. However, there wasn’t much tissue there to begin with so these finding weren’t too surprising. She did have to remove some of the capsular wall that is the pocket where the implant sits, so that puts me at a higher risk of capsular contracture with radiation (go figure) but I may not get it at all. I will wait 6-8wks for radiation (originally estimated 4wks), hopefully closer to 6 but will find out at my appt with the radiation oncologist in 3wks. All in all it was positive BUT I was hoping for a little clearer margins. I’m trying to not be in a cranky mood over this. I was very realistic about what to expect from today's appt... but unfortunately I'm still bummed the margins weren’t clearer or that it got into the capsular pocket wall. I fully understand there wasn't much tissue there to begin with and the best news is that it didn't touch my skin. Still though it’s a lot to react to and absorb... I’m still a bit disappointed & angry.
So until then, laugh at this terrible post-op selfie I had to take. Sent from CaringBridge iPhone app
July 23, 2018
July 17th, 2018
Well... it’s been a crazy few days! Seaside was so fun. It was HOT and we actually played on the beach for hours! Tim McGraw & Faith Hill were AH-MAZING! Seriously, I’m so in love with them. The next day we drove up to Carnation, WA and picked up Poppy Lou - our new Ragdoll kitten! She is just adorable and we love her already.
Yesterday I had another ultrasound and PET scan. Today I had pre-op appointments with my plastic surgeon, Dr. Hu, and my surgical oncologist, Dr. Cetas. Both of them said my scans were great. My lump went from 3cm to less than 1cm! It could actually be smaller than that l from what they could tell on imaging, but in pathology it could show that it’s smaller (even gone) and what the image is is a scar tissue pocket. Either way I’m thrilled it’s had a response to chemo!! Yay! Now just one more week until my lumpectomy & port removal. I’m actually doing a new procedure the day before called a Scout. Instead of a wire localization (which is where radiologist uses a wire to find the titanium clip marker where my biopsy was taken, creates a roadmap for Dr. C to go to the correct spot for removal) the Scout is like a biopsy but instead of removing a sample they inject a thing the size of a rice grain and it travels to the marker within 1mm. Less painful, no incision just a puncture wound, no wire hanging out of me oh yeah, and I don’t need to be at the hospital 4hr prior! Now I get to just chill until my Scout at 11am on the 24th
and then surgery (#5 in 13mo) at 9:3a onnthe 25th. Thankfully I’ll be home after both!
Crying happy tears for you. Such fabulous news!!! Hang in there and know you are surrounded by love & light.
—Kendra McQueeney, July 23, 2018
July 23, 2018
July 9th, 2018
Well we’re back from Idaho. It was a much needed trip. Why? Well Thur June 28th our 11yr old Persian cat, Lily Lou, woke up from a nap and threw a massive blood clot causing a stroke. Very long story short, a few hours after we returned from the Vet ER we were back there with her saying our goodbyes. It ripped my heart in two. So going to spend some time with our best friends was a good distraction! Both girls has 9” cut off of their hair and will donate it to Children With Hair Loss (they don’t charge kids for wigs). I also got rid of my cancer mullet and and now have an almost pixie cut. 4 adults and 5 kids, plenty of fun and were wiped out! We had a blast and we were sad to leave them.
We are looking forward to our Annual Girls Seaside Trip with my mom in 2 days. We will spend 2 nights at Seashore Inn in an oceanfront room with a forecast of 70-75! Then we come back and on the 14th Joey surprised me with tickets to Tim McGraw at UofO... 5th row!! Such an amazing 35th birthday/11yr wedding anniversary gift!
July 23, 2018
June 25th, 2018
It just dawned on me that I wrote this but never published it here! Whoops! Blame it on the chemo brain!
Today was my 12th Taxol Chemo - I AM DONE! Joey and my mom were there to send me out as were all of the nurses (who sang “Hit The Road Jack” to me). In my 16 sessions I’ve never seen a person at their last chemo, so the celebration was a surprise for me. I surprised them with yellow cake cupcakes with pink buttercream filling and chocolate frosting... and beer! My mom sent them a large Edible Arrangement too. Everything went smoothly and I am SO thankful to be done with cold capping. We’re sending those suckers back tomorrow! Joey even wore one with me for the last 25min that I wore one! It’s been quite the journey but I look forward to a few weeks “off” before surgery and radiation begins. I also look forward to our trip to Mt. Home, ID to visit my BFF Katie and her family over the 4th of July.
Emily I'm soooo relieved for this part of your journey to be over. I hope you had a wonderful time with your BFF on the 4th. Sending so much love xoxoxo Michelle
—Michelle Fitz, July 24, 2018
June 23, 2018
June 19, 2018
So today my amazing friend (and former high school cheer coach) Libby and her adorable son, Thomas, came to visit. Not only did they bring us girls lunch, but Libby made me the softest blanket Pink Warrior blanket ever AND a stunning wig! It’s so fun to have the option of wearing hair if I’m not feeling like embracing the super short scraggly hair. (And no worries, that’ll be taken care of by Katie when we visit soon. She’s going to rescue what hair of mine is left and cut the girls hair to donate!) Anyway, it was amazing to have a wig selected for me that fits me - that was one of the reasons I had hesitated. It’s something that was overwhelming for me so I feel extremely blessed to have someone take the time and consideration to do this.
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June 23, 2018
June 18, 2018
Holy cow only ONE MORE CHEMO LEFT! Today went really smoothly with the exception that my Aunt Cathy was home sick with the flu so my dad got to fill in for her. Usually Cathy is our awesome “chemo day nanny” after Papa takes them to school. So today they went with Joey’s parents who have our nephew every Monday, and they got to play for a while. Until Paisley came home sick, ugh!! Why is that a bummer? Other than the fact that I have not immune system right now, my labs came back that my white blood count was down to 1.3 (3 is normal) and if it dips below 1 they tend to delay chemo. We are hoping and praying it doesn’t do that because we just booked a trip to Idaho to visit Katie and her family in 3 weeks. If my chemo is delayed that won’t be awesome especially since compromises immunity on an airplane is bad enough. So let’s all say a prayer that my white blood count is NOT below 1!! We completely forgot to take a photo with my dad, so instead I took a “fantastic” selfie! Although yes, I’ve lost like 90% of my hair, even my oncologist said she was amazed at how much regrowth I already have.
Seriously, my hair is puffy now! I’m pretty excited to have this light at the end of the tunnel.
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June 23, 2018
June 11, 2018
Well it’s hard to believe that on Thursday will Mark ONE YEAR since my bilateral mastectomy. And 2 days ago we celebrated our 11yr wedding anniversary. This last year has been such a whirlwind!! Well, at least today went well. I had no unexpected tests and no more sinus infection. All of my labs looked perfect too! I will say as far as side effects, aching legs is a very real thing. It feels like I did a massive workout the day before and need to stretch... except any amount of stretching won’t help. It’s not the worst but it’s pretty miserable. I hope it stops since tomorrow is Ella’s last day of 1st
grade and we have another camping trip planned this weekend. Today Jenn (her daughter was in preschool with Paisley) came to help out for a second time... she kept us entertained!
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June 23, 2018
June 4, 2018
Today marked the first of the last third of Taxol. Yeah that’s a little confusing but hey, gotta look at these little milestones!! It actually went pretty easy with the exception of my awful sinus infection I battled last week. Thank goodness for antibiotics! I didn’t want
to take them last week when my dr prescribed them, however, I finally gave in and took them. Sinus infections on chemo are NO joke! Holy smokes I was miserable and in pain. I ended up in bed super early every night and not functioning well during the day. I’m grateful though that none of my lads showed any change other than being borderline anemic, which isn’t unexpected for everything I’ve been through so far. My long time friend, Shiri, was the assistant this week and was able to help my mom who is now trying to fight off a sinus infection.
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June 23, 2018
May 29, 2018
What a way for my mom to spend her birthday!! Good thing we had my friend and our neighbor, Keli, there to help us. Poor girl had no idea what she was getting herself into or what her time off of work would entail! My oncologist was still out and because I had described a chest heaviness (not to be confused with shortness of breath), the PA decided I needed to go in for a chest CT due to the elevated risk of a pulmonary embolism. I knew deep down that there was not a PE but since they can kill ya almost instantly, I didn’t want to take any chances. The results did come back clear so that was a relief! Overall I’m feeling really good, Wednesday evenings I start to crash around 4pm with an unsettled stomach all day. Thursday’s were easy on T but they’re starting to be a little harder. I’d say I’m down Wed afternoon to Thur afternoon, but not anything compared to my reaction on AC. Honestly just tired, not fatigued... and my body generally aches off and on. But onto the last 4 T’s where I was warned I’ll “just be done”. Good thing we had a fantastic Memorial Day weekend camping!!
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June 23, 2018
May 21, 2018
Today was my 7th Taxol and my amazing Auntie Cathy assisted my mom with cold capping. Thankfully nothing significant to report with my appointment and labs... or so I thought. My oncologist has been out of the office for a personal emergency and her PA has been filling in. I don’t know her and not a huge fan, but oh well. She noticed that my resting heart rate was increased every time I came in for treatment (go figure). One day it was at 144 which is really elevated, even though I explained to her that on that morning I drank a full 8oz of coffee which I hadn’t consumed for 3+ months... so I wasn’t shocked my resting rate was so high. It’s also a thing for all the women in my family to have higher rates in the morning for no reason and they’ll go back to normal as the morning goes on. She didn’t seem to care and decided that I needed an EKG because chemo can affect the heart. Thankfully they only take 3min to complete... after we had to wait 2hrs to get it done. That made fun not fun capping but oh well! Findings came back totally normal and no worries!
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May 17, 2018
May 17, 2018
I decided to take a photo the other day and show you all what the day after chemo really looks like. If you follow me on social media, I haven’t posted many selfies lately because my confidence isn’t at its all-time high. I’m not self conscious but going through this it really changes your appearance and I’m talking more than hair. Although my skin is super smooth and glowing thanks to R+F Reverse & Redefine... steroids give me a red puffy face for about 36hr after treatment. I also get so many steroids in my IV that I don’t sleep on Monday nights and Tue nights I have night sweats the majority of the time. So I then get what we call “chemo bags” under my eyes. R+F Bright Eye Complex and concealer can only do so much. I’ve also managed to still keep 75% of my lashes and brows with R+F Lash Boost, but Taxol is known to attack them again a few weeks after chemo is over as well as what little hair is left on my head. I do have some hair
regrowth, unfortunately not on my head yet. Anyway, this is me... this is real, and this is how I’ll be celebrating my big 35 tomorrow.
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Still a beautiful woman. A little hair loss does not decrease your level of badassery
—Jeff McCroskey, May 17, 2018
And you’re beautiful! I know the struggle you’re going through, but keep your eyes on the prize girl. You’re going to kick cancers butt and your hair will come back and you will still be beautiful! Sending love and hugs ❤
—K Noelle Walker, May 17, 2018
May 17, 2018
May 14, 2018
So, T 6 of 12 was a new experience. This past week I was really tired. Like zapped by 4pm on Wed-Fri. A big THANK YOU to Leslie & Mary who brought meals because they were needed more than we had anticipated. I was not very exciting Friday night, the girls and I snuggled on the couch a lot and Joey got to tend to us. Other than really feeling drained and tired, my stomach is unsettled a bit... consistently but slowly churning on day 4. All of my taste buds are gone again, it’s been nice having a few weeks of them returning partially. Last week day 4 was harder and this week it definitely was. I spent the day laying on the couch and trying to eat & drink enough to keep my stomach at bay. It’s not nausea like it was with AC, it’s just not happy. I know the dr advised me weeks 5-8 would be harder, so I’m not surprised with dose 6 it’s starting to affect me a little bit more. This week Jenny was my moms capping assistant and she was amazing.
She was able to take it on by herself in the afternoon when my mom had an appt and Joey was still at work. I only have 6 more chemo rounds to go! Half way there on dumb Taxol!
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May 8, 2018
May 7th, 2018
Well fantastic news: the time release pill form of Benadryl seems to be key to my survival! I still zone out and barely stay awake on the drive home around 1pm but that’s it! Today’s day went really well actually. So far I’m doing extremely well on Taxol and next week will make my half way through it, it is really daunting to do it every single Monday but I’m ok with it since I have minimal side effects. 2wks ago I met with my integrated medicine doctor who put me on Pycnogenol supplements for hot flashes and since I’ve been in it they’ve calmed down at night a bit. I mean, I go from 12 a night down to maybe 6... that’s huge! And I won’t lie, edibles have been a huge help with that as well. This week Christina assisted my mom with the capping. She was awesome to drive all the way up from Salem for the day to help. I only have maybe 20-25% of hair left, it sucks bad BUT I need to keep remembering that focusing on regrowth is a big deal. Good news is that some hair is starting to come back, just not on my face or head, ha!
I also have to say how proud I am of my Pink Soul Sister Louisa in Colorado. She was on the course of dose dense Taxol and completed her very last chemo today! She now gets 2wks of a break before starting her 6wks of radiation. By the time she’s done with rads, I’ll be prepping for my last chemo June 25th! My lumpectomy & port removal are scheduled for July 25th. I then rest for a few weeks and start up radiation on August 22nd for anywhere from 5.5-6.5wks depending on findings from the lumpectomy. I’m really hoping for the 5.5wks since I’ll be radiated from my sternum to right side chest (think where your arm rests against your side) but also up into my armpit... which I didn’t anticipate. The reason is to make sure they sterilize any lymph node passages that
rogue cells may have snuck into and tried to travel. As much as I don’t want my pit radiated, I want to be safe not sorry so I’ll do it!
Thank you again for all of the help with MealTrain and all of the uplifting items you’ve all so thoughtfully selected! Jenna Nish, you blew me away with the box & mala!
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May 1, 2018
April 30, 2018
Woohoo! I’ve reached my HALF WAY point with chemo! Today is 8 of 16. I’m so excited
however kind of over doing this every single Monday. Ugh. I’m also a little hesitant for dose 5 because I was warned 1-4 are easy, 5-8 harder and 9-12 I’ll be so over it. So we shall see. Today I was given a time release 25mg capsule of Benadryl and NO PASSING OUT! Yay!! It did however make me extremely drowsy until about 4pm. We also had our first repeat assistant! My friend Emilie came down with strep throat and at last minute Jean was able to step in and help. The day went by actually pretty quickly and capping was done at 4:30pm.
Thankfully the only side effects so far are intense and I mean INTENSE night sweats that start about 2hr after I’m asleep and wake me up every 90min. I was able to stop taking my steroid pill the night before and morning after chemo, but still get plenty of it in my premeds before chemo. They make me slightly puffy, especially my face... and turn my face pretty red. Super fun (not) but I’ll take that over the bad things that can happen.
And so far my nails look great. Dry skin, even though I drink a LOT of water, is a common side effect. The only thing that works is Shea butter. I slather my hands & feet in 100% Shea butter that Cris gave me at least twice a day, and use cuticle oil nightly.
May 1, 2018
April 23, 2018
Last week went really well! I don’t get knocked down, at least yet, like I did with AC. However Wednesday’s still prove to be the most “down” days and by 4pm I start to exhaust... same with Thursday’s. Today we tried cutting my Benadryl dose in half, to 25mg and pushing it over 10min. Yeah, that didn’t prove to help much. Around the 8min mark I noticed everything seemed really bright and clear. When the IV timer went off and the nurse came, I told her about my reaction last week. As she flushed my IV I told her something wasn’t ok, and within seconds I was curled into a ball once again practically passing out. It kind of startled her that I was that sensitive to Benadryl, so I had to take about 45min to sleep it off. The strange thing was that I could hear everything and everyone around me but not open my eyes or move my body. After I came to, everything went smoothly and I was once again wiped out until about 7:30pm.
Capping is going well although I only have about 25% of my hair left. However my legs & armpits are starting to regrow hair already so that’s something! Now if only my body would get on board and regrow my hair on my head & eyes! Haha! My moms former co- worker and friend Cris assisted us today and she was great. It’s so much nicer to come home and only cap for 4hrs after chemo is done instead of 5!
May 1, 2018
April 16, 2018
So today was Taxol 2. I was confident going into it since the first I really didn’t have much of a reaction to it. Well, open mouth insert foot. Apparently I was given 50mg of Benadryl with my premeds to help prevent a catastrophic reaction to the T. It’s not an abnormal thing to get. As I was telling my friend Jean, who was assisting my mom with capping, that Benadryl hypes me up so this should be interesting... all of the sudden things got really bright. And a few seconds later I was slumped over in a ball. I was dizzy, I couldn’t move and my tongue wouldn’t work. The nurse came over and confirmed I was reacting to the Benadryl and needed about 30min to sleep it off. Boy was that crazy!
Finally I perked back up and everything continued as normal but I was really tired and wiped out until about 7:30pm.
As for any other side effects, my taste comes and goes as does my appetite. My sunlight sensitivity and eye watering are tapering off. I still crave Mexican food all the time but
each week I seem to have a new craving that is just for the week. This week it’s Wendy’s cheeseburgers. Mmmmm!
April 15, 2018
April 9th, 2018
It has been a week since I had my first light dose of Taxol. The actual chemo day was the same length and routine as my AC chemo with the exception of cold capping. With light dose T I only need to cap for 4hrs after chemo is finished instead of 5. Now that may not seem like much, but when faced with doing this every single Monday for 12 weeks in a row... one hour less is huge!! Speaking of cold capping, it is still successful in the regard that I still have hair. Yes, I only have about 25% of my hair left and about 50% of brows & lashes... but I still have them! Most AC patients go for their 2nd dose hairless. We talk and joke about it lightheartedly with the girls, and they’re ok. So that’s a plus. They’re not thrilled that I have “long doctor appointments” every Monday now BUT Ella is happy to know right now that Day 3 (Wednesday’s after chemo) I am not completely down for the count like I was with AC. At least not yet.
I was warned weeks 1-4 would be an adjustment, 5-8 not fun and 9-12 I’ll be cranky and done with them. Since this regimen is cumulative as well, it’s just a slower pour filling up my chemo cup... we shall see how my body responds. The big side effects with T are
neuropathy (tingling, pins & needles and eve loss of feeling in hands, feet and mouth) and nail health. Nails can turn funny colors, completely lift off nail beds, split, crack, tear, etc. So gross! I battle the neuropathy with icing my hands and feet - with cold packs and frozen peas, same idea as cold capping just not at -33! To battle the nail health, I use a special nail polish base coat, dark nail polish and a UV top coat since sunlight can expedite the nail damage. I also keep them very short, moisturized cuticles and hands too.
This week I was blessed with the help of my neighbor and friend Amanda. She helped my mom cap me during my first T. The only anxiety I had that day was knowing I’d be capping without the use of my electric blanket. Unfortunately at my last AC, a not so open minded nurse who’s been a little resistant to the idea of cold capping, informed me it was against policy for us to use electrical outlets for personal things. Yet, others plug their cell phones in during chemo. Whatever!! So now I use several hot blankets and instant hot packs that only last maybe 5-6min each. Their problem I guess! Just makes for more laundry and supplies to order. Thankfully Amanda was great and kept me nice and toasty, and helped to keep my mom organized with the capping. Hopefully dose 2 goes smoothly without a hitch too.
Thank you once again to those of you who keep checking in on us and those who have provided meals. It really is helpful and appreciated.
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Thanks for sharing. We love you Emily!
—Bret Retallick, April 16, 2018
March 27, 2018
March 26th, 2018
So today was my LAST A/C!! This is the hardest chemo regimen they give so I’m so thankful to be over it! Last week was a great week, one of my best weeks since starting chemo. I think a lot had to do with staying busy preparing for Ella’s 7th bday party and counting down the days until my BFF Katie & her 8yo daughter flew in to stay with us and surprise Ella.
The party was a success as was my last AC round. I am forever grateful to have had Katie here being my hands and brain, helping Joey & I out more than we could ever ask for. It was also awesome to have Lucy here to occupy the girls for the weekend and first day of spring break which fell today on my chemo day. We are all so exhausted but our heart are full. We were also all crushed when Katie & Lucy left to fly back to Idaho.
With my 3rd round of A/C I was down days 3-6 (Wed-Sat), my longest period down to date. But by Sunday I wa shack up and going. Doc said she wasn’t surprised at all.
So far I’m doing better than my team has anticipated which is always a blessing! It’s also official that we can no longer feel the tumor!! It doesn’t mean it’s not there, it’s just smaller than we can feel. Lumpectomy and port removal is tentatively schedule for July 25th, assuming my last Taxol chemo is June 25th.
With Taxol I’ll be starting April 9th and having it every Monday for 12wks IF all of my numbers stay good. So far they’ve been perfect! I’ve been borderline anemic (10.8 and avg is 12) and my doctor said that’s to be expected. I was also informed weeks 1-4 will be quite an adjustment, 5-8 good, and 9-12 I’ll be cranky and over it so it’ll be harder. At least I know what to expect!!
Thank you for all of your MealTrain co tributions!! They come in handy... especially when I am zapped and so fatigued.
March 13, 2018
March 12th, 2018
Round 3 went well! When I was administered my premeds (steroids, saline and nausea meds) I actually got really nauseous. Then we figured out why! With so much less hair, the cold caps were A LOT colder than last time. So some deep breathing for a few minutes helped me through it. Other than that, it all went really smoothly!! Jennifer, a preschool mom & friend, assisted my mom for the day... and she rocked it! I’ve lost about 60% of my hair but it’s just really thin now. I have to remember that the cold capping saves new and medium aged follicles and also focuses on promoting new
growth, speeding up the regrowth. And I’m doing all I can do at this point, the rest is out of my control. Good news was that I felt decent enough after capping to make it to a special cheer night for Ella. Her K-2 team and the 6-8grade teams were asked to jointly cheer for the special needs Shooting Starz basketball team. So that was a pretty big deal that the big girls learned all of the little girls cheers and they performed together, even stunting together!! And I got to see it all. Yes I was a vegetable by the time we got home, but it was worth it!!! That was their last game with their showcase this coming weekend, then in a month Flag Football Cheer starts and this season Paisley will join Ella’s team! Woohoo!
The difference with this round was that I didn’t go back in the next day for the Neulasta shot. This time I received the on-body injector patch which waits 27hrs then automatically injects the Nuelasta over 45min. I didn’t get it for my first 2 chemos because usually people’s lab numbers change quite a bit but mine maintained the same as before chemo, so Dr. B said she’d spare me drive the next day. It’s interesting but I think next time I’ll make the drive the following morning for the shot that takes 1 painless minute. It’s a pain to sleep with a large hard patch the flashes every 5 seconds a bright green light... especially when on the nights of chemo I am awake a lot with hot flashes/night sweats and then awake for the day at 4am.
My sweet dear Pink Soul Sister and Chemo Pal, Louisa has officially finished her 4 rounds of A/C and I’m so proud of her! She has to commute 6hrs to her oncology clinic on Sunday, chemo & capping on Monday, then drives home Tue. She will now start 4 rounds of dose dense Taxol (T) on March 26th as I get my last round of A/C. Then April 9th I’ll begin my first of 12 rounds of light dose Taxol (T) that I’ll get every single Monday until the end of June.
Once again, we appreciate all of your reach outs and MealTrains - really more than you know. So, thank you again.
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March 6, 2018
March 6th, 2018
I thought I’d give you all an update on the wonderful world of me! Haha! Last weeks chemo went a lot better than the first round. I was extremely fatigued on days 3-5, meaning I was not functioning by 5pm and asleep by 7pm. However, during the day I felt great just had zero energy. That’s a really hard thing to deal with, I’m normally pretty active and on the go. So wanting to do things but having no energy to do them is frustrating. Even something as simple as folding laundry or dusting, I intend to do them then just can’t muster up energy. Thankfully my parents have been able to help with pickup and drop offs with the girls school so I don’t have to attempt to get us 3 up & ready and out the door by 7:30am.
This week is when my hair shedding is in full effect. The caps are not guaranteed to work, but they do help on some level. My hair has definitely thinned A LOT but it’s not coming out in patches so far. I’m at peace with the fact that I’m doing everything I can in my control to keep my hair. If it’s not as successful as I’d hoped, there’s nothing I can do about it. But I can be thankful that cold capping is known for helping hair regrowth. The first 4 rounds of AC chemo are the harshest in my treatment and also known for hair
loss. After these rounds I’ll switch to Taxol on a light dose, every week for 12wks. Many women actually see hair growth while on Taxol... so hoping that plus cold capping will get new growth underway sooner than later. I will say washing hair only every 4 days is proven to be harder than I thought. My scalp is itchy but I can’t scratch it. I’d love to be able to pull my hair back, but I can’t have that stress on follicles. Combing it only once per day to remove mats is hard too. It tangles with loose hair constantly, looks stringy, oily and flat. I can only use a wide tooth comb and a light detangling moisturizing spray... and can’t comb until it’s dry. No styling, no hair products, no heat. My shampoo & conditioner are special clarifying formulas, and it needs to be washed in the sink with cool water because the hot shower spray is too intense for the follicles. Also, no scrubbing or washing the scalp, just gently supporting the hair and letting the water & shampoo do the work. Yes, this is all a hassle but it’s also worth it for me. So many people are able to embrace “bald is beautiful” but I have a choice to try something else and I took it. I never realized how much I identified with my hair until it is a desperate battle to save it. I’m trying my best to stay positive but honestly, sometimes this process is annoying and infuriating. The photo I’ve included today is to show the progression of days 20-22 when shedding is at its peak. I actually had a pile like this 4 times yesterday.
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Praying you will have peace throughout the rest of your treatment and increased energy!! Please let me know if there is anything I can do to help! 💗
—Dannette Duhrkoop Cisco, March 7, 2018
February 27, 2018
Feb. 26, 2018
Well chemo #2 went soooo much more smoothly than the first time around. We also had another Penguin Cold Cap rep come and assist my mom and my friend Jordyn for a few hours to make sure we know exactly what to do. I did end up with some frost burn on my scalp last time which hurt really bad. This time we had more tips and tricks to combat some issues, and they worked. Absolutely NO TEARS WERE SHED! Woohoo! We will see later this week how well it is working. Day 18-21 will show how much thinning/shedding will actually take place. So far I don’t see much so I pray it’s working!!
Unfortunately it was also Joeys birthday, so he came home to take care of his girls. Our lovely neighbors Amanda & Morgan grilled him some steak, homemade garlic mashed potatoes, broccoli & cheddar soup, and chocolate cake hand delivered for his bday. It was so nice!!
I do want to take a few moments and touch base on my last 2wks. So many of you don’t have experience with cancer, especially breast cancer since were in our early-mid 30’s.
So I’m going to rewind and go back to the day after Chemo 1 of 4. Tuesday I still had massive steroids coursing through my system so felt great! As a general rule of thumb, day 3 is the hardest... Wednesday did not disappoint! The steroids cause my ovaries to overwork and causes me to have insane night sweats and not sleep well. Days 1-4 I’m up several times a night changing pjs, drinking water, going to the bathroom (which I must double flush), and trying to get comfy. By about 4am, I’m up and brain is functioning at high speed. However, I was given all of these nausea meds to take but wasn’t clear on when to take them, what to not mix, how often, etc. A oncology nurse called me Wed and reviewed it all, I took notes and got my meds under control. No more sever nausea or constipation!! (However I was told today the night sweats are a side effect I must just deal with for now. Lame!!) I also have severe “metal mouth”, like I have pennies in my mouth 24-7 which also causes loss of taste. I am completely vinegar & salt obsessed, mustard is my jam right now. So odd! Also quesadillas tasted amazing on week 1!
Thursday (day 4) I was still a bit down for the count but not bad, Friday was even better. It got better from there and last week was great. I really felt normal, minus the loss of taste. PS: my oncologist said she feels the tumor has shrunk by at least 50% and is much softer... she does NOT sugar coat things or say things she doesn’t believe. So this is great news!
I also have 6lbs of gummy bears thanks to Jenny (she was awesome and donated the dry ice for chemo 2), I mentioned they’re suppose to help with taste issues... and I got some white cheddar Cheez It’s for nausea. We shall see if they work! All of your cards, gifts and well wishes have not gone unnoticed or unappreciated - i haven’t had a chance to get Thank You cards out so please know we THANK YOU! Same goes for all of you who have signed up for our MealTrain. I notice every day on week 1 I start to crash about 5pm, so when Joey gets home he is dumped with the single parent duty as well as care for wife duty. He’s SUCH a rockstar! But having meals for him & the girls takes so much stress off of him, it’s greatly appreciated.
**If anyone is interested & willing to volunteer to assist my mom with Cold Capping on Monday’s starting in April, PLEASE LET ME KNOW! It is not hard to do, just easier with a second person to make it go seamless. Generally my appts start at 9am at Meridian Park Hospital campus and I am home by 2pm or earlier... but would need you until about 4pm when Joey gets home. You’re welcome to ride with us to make it easier, and times may vary each Monday but should be similar.***
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—Michelle Fitz, February 28, 2018
February 13, 2018
February 12th, 2018
AC Chemo #1 of 4... with Penguin Cold Caps.
Well our morning started at 7:30 capping and went fast - we got home at 1:30pm. Chemo was the easy part. I’m exhausted and a little bit nauseous. The hard part was having these gel filled head wraps placed on my head every 25min. They sit in dry ice for hours and can’t be applied to me until they warm up to -30 degrees. That’s painful cold. Imagine the worst migraine with a 8lb block of ice on your head... and just when it gets bearable and you get comfy the timer goes off. That timer says it’s time to switch it again. It’s an aggressive, painful and annoying long process but it’s important to me to try to preserve my hair as best I can and help it grow back. Joey and my mom were rockstars being trained by the rep all morning on how to get these bad boys on correctly. Thank you so much for the encouragement, support and check ins. It’s truly appreciated. If I don’t get back to you, I will - sometimes emotions and exhaustion and nausea all kick in taking turns or even all at once. And when they don’t, my kids want my attention. So bare with us!
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February 8, 2018
February 7, 2018
Today $h!t is about to get real. I’m putting on my battle gear this morning and I want to tell you all about it.
Cancer affects so many of us, but it’s not often that people close to my age are extremely close to someone undergoing this battle. I have always been and will continue to be an open book with this journey.
So this morning I had to take my obligatory cleansing shower (special soap & rules). As I got out I realized, this is the last time I’ll be washing my hair how I have done for the past 30yrs. It’s the last time for a year plus that I’ll be able to use my beloved hair turban. It’s the last time I will use detangler and a blow dryer... absolutely NO flat or curling irons either. What really gets me is this is the last time I’ll brush my hair out well and vigorously and be able to pull it up/back. Yes, hair grows back. But as a women and a mom I am not ashamed to admit I identify with my hair. Boobs were already taken and easily replaced, most people couldn’t tell anything was going on. But the hair loss thing is a very real deep seeded fear. Which is why I am choosing to help preserve what I can with Penguin Caps (that’s for another day). I also have my fave mascara on. Why?
Because I’m not sure if I’ll be keeping my long amazing lashes or not. I was cleared to use Lash Boost this whole journey as long as there’s no reaction... so I will wether I have lashes or not. But I can’t risk them falling out by removing mascara.
Yes, I have my Hakuna Ma-tatas shirt on, pink sports bra, and Stay Strong yoga pants... I’ll also have my Survivor hoodie. These are all important parts of my armor that I mentally need to brace myself. When I wake up, I will have a foreign device half inside of me. Yes it will come out in 5-6mo but it’ll leave yet another scar. Only this time that scar will be on my chest and a constant reminder of this hell I am enduring.
Lastly, my newest piece of protection - my R+F headband. No, I won’t be able to wear it for a year after Monday so I’ll wear it today and know that my entire team (I’m talking 600+ people) know what I’m going through, are praying for me and have my back. It’s not JUST my new skincare business, it’s my new family. It’s a sisterhood that I NEVER anticipated I would need but i appreciate them to my core.
This journey is hard. That’s the truth. My very best friend lives far away and it destroys us both that she’s not physically by my side to help our family through this. I have found strength from a new friend I’ve never actually met (yet) who is so graciously holding my hand as we battle this same journey together and she’s only one week ahead of me. I have support from others who have privately connected with me because they have experience with cancer. I also have my wonderful husband and children, who amaze me daily. I don’t ever take them for granted. And that goes as well for my parents & aunt, who are retired and have stepped up to help us as much as possible - there’s guilt that they now spend “free time” taking care of us. But that’s what family, blood or not, does. Thank you to those of you who have reached out to us. Remember through all of this, I’d love visit dates.
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January 30, 2018
Jan 30, 2018: So the best news of all is cancer has NOT spread! This is considered a recurrence not a new cancer. It is triple negative (no hormone involvement). Because I’m still under 35, these are all things in my favor of chemo getting rid of this. This ball is moving REALLY fast. So next week I have an echocardiogram, meet with an integrated medicine doctor, and then have my chemo port placement surgery on Wednesday. (Thur I’ll be able to attend Ella’s field trip and Fri host our Cupcakes & Conversations.) Monday the 12th I begin my 4 doses of AC chemo, one 4-6hr session every other Monday for 8wks. Every other Tue I will go in for a Nuelasta infusion to help with raising white blood count/bone marrow. Once AC is completed, I’ll then switch to 12 doses... one every Monday for about 4hr. So total is 20wks IF there’s no delays due to complications or reactions. I do plan on using Penguin Cold Caps to attempt to retain most of my hair, they’re very expensive but for me it’s worth it. Once chemo is done, I’ll recover for 4wks then have surgery to remove my port and the remaining lump. After recovering another 4-6wks, I will then begin 6wks of radiation. I don’t have much info on the plan after chemo because I can only take so much, so when the time approaches I’ll have more information. Right now I have to process all of this - which as a mommy is A LOT. The girls know that mommy’s cold in her boob is back and soon we will explain it a bit more in-depth... so please refrain from too much chatter with them regarding this. Our goal is to function as best I can, look as normal as I can and keep things as “regular” as possible (including still being very active with R+F, your orders are appreciated). We will all have to adapt.
What can you do? I have updated this site where you can participate in our MealTrain and GoFundMe. Please check in on not just me but Joey as well. And remember that this is a VERY LONG journey our family will be on, so when you continue checking in on us
past the first month or two that is seriously appreciated. We don’t like asking for help, so we probably won’t reach out if we need anything. Continue to ask and offer. Drop off groceries, or ask when you could just stop by to hang out for a bit or play with the girls. Read the story I posted earlier on here about how to help those diagnosed. If you’re not able to do that, please pray for us.
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Sending prayers your way
—Tiffany Nicholson, January 30, 2018
Oh Emily I’m so sorry to hear about this. I’m sure it’s very overwhelming and discouraging for you. But you’re a very strong woman and you have a great support system. I wish I could offer you more but I’d be more than happy to drop by some meals for you and the fam. If you message me your address I can definitely make that happen
□□ prayers to you and your family.
—Christine Berg, January 30, 2018
Love you!
—Mariam Ibsais, January 30, 2018
Emily, I am so glad God aligned our paths. I am devastated this has once again happened. Cancer is never an easy road (as I am well aware walking this path along side my daughter) but, your faith and perseverance are inspiring! I know I am not close by, but I am a prayer warrior and I have added you on my prayer chain. I can’t wait to meet you in person and to hug your neck. Sisters in faith, friends by choice and warriors side by side! God’s got this! ❤
—Erika Key, January 30, 2018
Thoughts and prayers for you and your family Emily as you start this journey. You are so strong and I know that you can beat this!! HUGS!!
—Dannette Duhrkoop Cisco, January 31, 2018
January 26, 2018
Jan 25th, 2018
So I thought it was time to share some earth shattering news I’ve received. As most of you know I was diagnosed with breast cancer in April, bilateral mastectomy in June and cancer free since. In October I completed my reconstruction successfully. Unfortunately about 2wks ago I found another lump. Biopsies on Tue confirmed my worse fears: it’s back. It is a recurrence so still triple negative (not being fed by my hormones, but they don’t know what’s feeding it) and I had a PET scan today to see if it is just the lump or spread. Please pray it is just the lump! My future will be chemo for sure. If it has not spread that’ll be followed by lumpectomy and radiation. (That’s what I’m hoping for!) If it has spread, that means longer harder chemo. Being a stay-at-home mama to 2 little girls (Ella will be 7 in March and Paisley is 4.5), a full time working hubby and now my Rodan+Fields biz... it’s a lot. My next appointments are Monday at 2:40pm with my surgical oncologist to go over my Attack Plan. Tuesday at 11am with my medical oncologist, to get more information on what chemo road I’ll be traveling down. I’ll keep everyone posted.
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We are sending you prayers and support. You are amazing. Tons of love. Sharon, Tom, Sophia and Joseph McFadden
—Sharon MCFADDEN, January 26, 2018
May 31, 2017
I found this on a FaceBook support group and thought it nailed what this feeling is like...
"What’s it like to go through cancer treatment? It’s something like this:
One day, you’re minding your own business, you open the fridge to get some breakfast, and OH MY GOD THERE’S A MOUNTAIN LION IN YOUR FRIDGE.
Wait, what? How? Why is there a mountain lion in your fridge? NO TIME TO EXPLAIN. RUN! THE MOUNTAIN LION WILL KILL YOU! UNLESS YOU FIND SOMETHING EVEN MORE FEROCIOUS TO KILL IT FIRST!
So you take off running, and the mountain lion is right behind you. You know the only thing that can kill a mountain lion is a bear, and the only bear is on top of the mountain, so you better find that bear. You start running up the mountain in hopes of finding the bear. Your friends desperately want to help, but they are powerless against mountain lions, as mountain lions are godless killing machines. But they really want to help, so they’re cheering you on and bringing you paper cups of water and orange slices as you run up the mountain and yelling at the mountain lion - “GET LOST, MOUNTAIN LION, NO ONE LIKES YOU” - and you really appreciate the support, but the mountain lion is still coming.
Also, for some reason, there’s someone in the crowd who’s yelling “that’s not really a mountain lion, it’s a puma” and another person yelling “I read that mountain lions are allergic to kale, have you tried rubbing kale on it?”
As you’re running up the mountain, you see other people fleeing their own mountain lions. Some of the mountain lions seem comparatively wimpy - they’re half grown and only have three legs or whatever, and you think to yourself - why couldn’t I have gotten one of those mountain lions? But then you look over at the people who are fleeing mountain lions the size of a monster truck with huge prehistoric saber fangs, and you feel like an asshole for even thinking that - and besides, who in their right mind would want to fight a mountain lion, even a three-legged one?
Finally, the person closest to you, whose job it is to take care of you - maybe a parent or sibling or best friend or, in my case, my husband - comes barging out of the woods and jumps on the mountain lion, whaling on it and screaming “GODDAMMIT MOUNTAIN LION, STOP TRYING TO EAT MY WIFE,” and the mountain lion punches your husband right in the face. Now your husband (or whatever) is rolling around on the ground clutching his nose, and he’s bought you some time, but you still need to get to the top of the mountain.
Eventually you reach the top, finally, and the bear is there. Waiting. For both of you. You rush right up to the bear, and the bear rushes the mountain lion, but the bear has to go through you to get to the mountain lion, and in doing so, the bear TOTALLY KICKS YOUR ASS, but not before it also punches your husband in the face. And your husband is now staggering around with a black eye and bloody nose, and saying “can I get some help, I’ve been punched in the face by two apex predators and I think my nose is broken,” and all you can say is “I’M KIND OF BUSY IN CASE YOU HADN’T NOTICED I’M FIGHTING A MOUNTAIN LION.”
Then, IF YOU ARE LUCKY, the bear leaps on the mountain lion and they are locked in epic battle until finally the two of them roll off a cliff edge together, and the mountain lion is dead.
Maybe. You’re not sure - it fell off the cliff, but mountain lions are crafty. It could come back at any moment.
And all your friends come running up to you and say “that was amazing! You’re so brave, we’re so proud of you! You didn’t die! That must be a huge relief!”
Meanwhile, you blew out both your knees, you’re having an asthma attack, you twisted your ankle, and also you have been mauled by a bear. And everyone says “boy, you must be excited to walk down the mountain!” And all you can think as you stagger to your feet is “f*ck this mountain, I never wanted to climb it in the first place.”
May 25, 2017
May 25, 2017
Today I had my pre-op appt with Dr. Hu, my plastic surgeon. She was able to answer several questions and reassure me that I CAN do this! The surgery is set for June 14 at 7:30am, and will take 6-8hrs, probably not coherent until dinner time. I should be discharged on the afternoon of the 15th, so not sure I'll be up for hospital visitors.
However, if you'd like to visit me the following week, just text me or Joey to see if I'm up for it. My first post-op appointmeets are June 22, I have one with Dr. H at 9:30am
followed by Dr. C at 11am. My appt with Dr. C will be when I get the pathology reports back and review my Attack Plan. For now my Genetics Counseling appointment was cancelled because due to insurance approval delay, the results won't be in until right before surgery. Since the results won't influence my surgery, I can wait to get the results and the dr will most likely just call us with them. Next I need to go do my pre-op labs on Wed and then just hang out until surgery day. And boy oh boy is there a lot of prep work I need to do the night and morning of surgery! Eeek! Keep praying and thank you to those of you who have sent cards, gifts and words of encouragement.
May 18, 2017
May 15, 2017
So today I met with Dr.C for my pre-op appointment. Really it wasn't necessary but I like her so much that I felt seeing a doctor that is so positive would help calm my fears and anxiety over this whole situation.
She went over my diagnosis again, reiterating that we truly won't know what we're dealing with until those pathology reports come back after surgery. Originally I thought I'd be told about that about 2wks post-op but turns out I'll likely have an appt with her at 6 days post-op and she will have those results as well as the recommended Attack Plan for me. Although that's a lot to process, I'd rather know then versus another week later. I would also much rather get that info from her than Dr.B (medical oncologist) who I am still not fond of.
Dr. C also addressed our bad experience with Dr.B (being very negative and blunt), letting me know she is meeting with her over her approach with us. Dr. C said that Joey & I are very reasonable people and if we were THAT shaken after meeting with Dr.B, then there's reason to believe other patients have been as well. So that was good to hear. For now I'll still stick with Dr.B but after the reports are in and the plan is outlined, I may switch oncologists to the other doctor in her office. We will just see what happens!
Right now we just need prayers that the reports show the MC is less that 5mm (the one spot they did find was 0.5mm). Also, currently I fall into the Triple Negative category (estrogen & progestrone negative, Her2 negative) and that could change. There's really no good way for that to go, they all stink but will slightly change my Attack Plan based on if hormones play a role or not. We also need prayers that when the sentinel nodes are removed, they still come up negative for everything.
My next appointment is with my plastic surgeon, Dr. Hu, on the 25th. She's awesome!
Well happy 34th birthday to me! (May 18th)
Praying for you, joey and the girls ❤
—Selena Allen-Benim, May 20, 2017
I SO admire your strength, Emily. You are a force to be reckoned with. I'll will certainly be
praying for you and your family, and please let me know if you need anything at all.
❤❤❤
—Marie Harris, May 20, 2017
Sending hugs and much love for good news and the best recoveries possible.
—Kim Heinrich, May 23, 2017
May 13, 2017
May 3, 2017
Today I had my chest/abdomen/pelvic CT scan as well as a neuclear bone scan. The purpose of these is to see if the c-devil has spread to anywhere else in my body. It's a necessary process before surgery in case we need to change our Attack Plan. I never realized how scared I was of these results. This could possibly shake up my world again. So say a prayer and let's hope these come back negative!!
May 4, 2017
GREAT NEWS!! Joey spoke to Dr. C today who gave him wonderful news - all tests are negative!!! That means we proceed with surgery as planned, no detours for now. Tears of relief can't even begin to explain how much weight has been lifted off of me.
Next I meet with Dr. C on the 16th for my pre-op. Then I meet with Dr. Hu (plastics) on the 25th for pre-op. On the 31st I get the results of the genetic testing. So far, so good!
April 26, 2017
So let's start back at the beginning!
Late December 2016: I noticed that my right nipple had blood sneaking out instead of just residual milk (yes I still produced milk 2+ yrs after no longer nursing Paisley). I went in and was treated for an infection with hefty antibiotics. It was suggested I do a follow up mammogram and breast ultrasound. They found fibrous tissue, totally normal.
Early Feb 2017: The bloody discharge was still present but no other symptoms. So I went back inand had a test done that determined i had some abnormal cells so needed to see a breast health specialist, and there was now also a tiny little pea size bump.
Mid March 2017: I saw Dr. Cetas a surgical oncologist about the boob issue. She said it looked like an infection but regardless she wanted me to go in for a contrast MRI. Between the time of that appt and the MRI the tiny little pea sized mass grew to about a golfball size and was painful. The breast skin was red, hot and very tender. It definitely
was looking like an infection.
Early April 2017: contrast MRI wasn't difinitive but showed the possibility of abnormal cells that resembled a possibility of cancer cells. Super scary stuff!!
Mid April 2017: The next step was to get some biopsies. They took several from the mass as well as from a nearby lymphnode. This was very traumatic!!! The radiologist told us the mass biopsy would be fluid like if it was infection and solid if it was something not good. Instead of leaving it at that, she told us it was solid. So I opted to get the lymphnode done at that time to just make sure everything was ok.
April 19, 2017: Everything was NOT ok. A radiologist called me (not even the one who did the biopsies 2 days before) and let me know they tested positive for Ductal Carcinoma In Situ and Microinvasive Carcinoma. The DCIS is the majority and the MC is a tiny 0.5mm spot. Enter panick mode.
That day was a whirlwind as my life as I know it crumbled. Joey rushed home and my mom came over as fast as possible while I was sobbing in my room, hiding from Paisley. (Ella was at school!) Within a few hours Joey had spoken to Dr. Cetas and 3 other doctors who are now part of my team, to get info and set up appointments.
What does this all mean? I don't really know. I know there'll be surgery and maybe treatment... but at this point in my eyes, my life is stopping.
April 26, 2017
April 25, 2017:
Ok, so here is a recap of my appointments today with my oncology surgeon & plastic surgeon. (Feel free to Google any terms!)
As of now according to the biopsies... the large mass is DSIC Stage 0 Grade 2. That means it's contained in my ducts but growing moderately fast. It is not currently affected by any hormones/estrogen. The small spot is a Microinvasive Carcinoma, which is aggressive, Stage 1. Because it is so small 0.5mm, it's hard to tell how much there really is. Anything 6cm and under is considered Stage 1 with MC. So this is all good news. It could change after the mastectomy when the pathologist has to go through all of the removed breast tissue and determine how much is DCIS vs MC. Fingers crossed there are no spots larger than 6cm that are MC. My next step is to have an abdomen CT & bone scan May 3rd to make sure no cells are hiding anywhere outside of my breast tissue, but Dr. Cetas doesn't believe this to be the case. She will call me with results ASAP. After that we meet again May 16th to review the results and make sure we know what path on my Attack Plan we're taking. (If results show anything else, the current plan will be altered.) It is my choice to undergo just a single or double mastectomy. Once removed there's a 2% chance of recurrence, if my left one stays there's a 10% chance it'll develop something too. Currently I'm leaning towards a double.
The plastic surgeon is a wonderful person. She spent 2hr with us answering all of our questions and I'm no longer as terrified of the surgeries ahead. The plan is mastectomy on June 14, with a critical 2wk recovery and in 4-6wks I should be pretty much back to normal. Tissue expanders will be inserted and about 50cc of saline injected weekly to get me to the size I prefer. Then when I'm there and it fits into my schedule, they will be switched out for actual implants. If I choose to have a nipple reconstructed that will happen 4-6mo after implants, and then tattoo to add color for a nipple.
As far as radiation/chemo goes... it all depends on what the pathology report says after the mastectomy. I may not need anything, I may need radiation for the MC, or I may need chemo & radiation if there is more found elsewhere.
Monday I meet with a genetics counselor to see if I carry the BRCA breast cancer gene among other things. That afternoon I meet my medical oncologist and we discuss the
possibilities of treatment after surgery.
My goal? That after the mastectomy they find that the mass is primarily DCIS and just a teeny tiny spot of MC which as it stands, probably wouldn't need treatment after surgery. Also that all of my genetic testing comes back negative/clean. Please pray for this!!
I am ok talking about it and feel free to ask anything! If I see you in person, please know we have drastically filtered what we have told Ella and she is extremely sensitive to this situation. We call it "BC" and she knows there's a sickness inside me that the doctor will have to take out with surgery. This about the extent of what I'll talk about if she is around, so don't think I'm shutting you down and not trying to talk about it.
Thank you for your love and support... keep it coming... keep checking on me... keep praying.