I finished Radiation!

I know it's been a while since I updated the blog, but that's a good sign that life is finding it's way back to some kind of normal.  People tell me that life after cancer is never the same as life before cancer, but so far, I'm finding that it's not terribly different for me.  I have plenty of appointments and take more pills than I ever have, but I'm back to cooking for myself (I sure do miss the Meal Train!) and cancer doesn't consume every conversation I have.  It's good to know that the worst days of this ordeal are behind me.  I'm grateful that God kept me through those days and I'm pleased with myself for not letting the struggle get the best of me.  All in all, life after cancer is a good place to be.

First day of radiation (left)
Last day of radiation (right)

The last time I blogged, I was about to begin radiation.  Radiation wasn't a picnic, but it wasn't as bad as chemo.  I underwent 20 treatments, one every weekday for 20 days, except Christmas.  Which meant I finished on December 26th.  The first 15 treatments radiated the same area day after day.  Every other day I wore a bolus to even out the treatment on my skin.  The area was a giant square that stretched from just below my collar bone to about 5 inches below my incision.  It also reached across my sternum and wrapped around to my back.  They added another small patch of radiation to zap the lymph nodes in my neck that run near my esophagus.  The final 5 treatment were called "boost" treatments, which focused specifically on my scar and the surrounding 2 cm.  This area is a common site for recurrence, which is why they do the boost treatment.  Because radiation is a cumulative treatment, you don't notice much in the first few days/weeks, but the worst of it comes 1-2 weeks after you've finished.

For me, the worst side effect was the burning of my esophagus.  I didn't even know it was a possibility.  After a week of treatment, I started getting a sore throat.  I thought I could be getting sick, but then decided that maybe I had somehow scratched my throat by swallowing something sharp, like a chip or crispy bacon or something.  That feeling continued to intensify for another week and a half before I brought it up to my radiation oncologist.  He didn't seem concerned, saying it usually just feels like a scratchy throat, but let him know if I needed some medicine for it.  Well, either I'm a big ol' baby about pain, or the radiation burned my esophagus more than he anticipated because within 2 days, I could barely eat.  I had to take tiny bites and chipmunk it into my cheek to swallow it just a very little bit at a time.  I also developed this feeling like a pill was stuck in my throat.  I think it must have been a blister on my esophagus or something, but it was just past my gag reflex.  For about 2 weeks, I felt like I could vomit at any moment because the thing that was stuck just wouldn't go away.  The doctor prescribed me a numbing mouthwash, they call it Magic Mouthwash, as well as a drug called Carafate.  I had high hopes for the mouthwash, but turns out it's junk.  It numbs your throat, tongue, lips, etc for like 3 swallows and then the food/drink washes it down and you're back to where you started.  Plus it tastes terrible, so it's not worth it.  The Carafate, on the other hand, was more helpful.  It didn't take the pain away, but it coated my throat enough to lessen the discomfort.  I took it 4 times each day and did my best to keep eating and keep drinking.  I pureed as much food as I could and ate a whole bunch of soup.  Love me some Panera!  I ended up losing around 10 pounds in a 7 day period.  It was no fun starving because I just couldn't swallow anymore food.  Thankfully, I'm feeling much better.  The esophagus isn't completely healed, but it only bothers me if I don't eat slowly.  So I just make sure to eat slowly!  The entire experience took me back to the days of my dad's radiation.  His was way worse than mine and he was such a trooper through it all.  I tell you, through my cancer journey, I've really learned that my dad was a tough cookie.  A total beast, really!  I think I inherited my grit from him!  Don't take that the wrong way though, my mom is a force to be reckoned with in her own right!

The only other annoyance from radiation is the skin burn.  For me, it didn't really develop until a week after my last treatment.  Prior to that, I had tiny blisters all over my skin, but I preferred to think of them as a rash... it made me feel better about things!  But once the treatment was done, the cumulative radiation dosage gave me blisters in my armpit and along my incision.  They're still in the process of healing, but haven't caused me much pain.   Some people have quite a bit of fatigue during treatment and for a few months afterward, but I haven't really noticed it much.  I mean, what mom isn't tired all the time?

I got to ring the bell after my final radiation treatment.  It was a happy moment!  It finally hit me that the worst days were behind me.  At the beginning of this road, when I was first diagnosed, I was feeling very overwhelmed with the treatment plan.  People told me to focus on taking it one day at a time.  And so I did.  I took this journey just one day at a time and really asked God to give me the strength to make it through what I needed to each day.  He did.  When I rang the bell at my last radiation, I realized that the culmination of every single day, one at a time, had brought me to the other side of all the things that overwhelmed me at the beginning.

These are the sweetest nurses at NKCH!
One of the silver linings of this cancer experience has been the lovely people I've met.

I've also gotten started down the ovarian suppression path.  I've had my first two shots already, only 118 to go!  Just kidding!  Until it's down to a number I can make with my fingers, I am absolutely not counting down.  I had my first shot on the Monday after Thanksgiving and I was pretty worried that when I woke up on Tuesday, I would be a different person.  Thankfully, that did not happen.  I've had moments of feeling quick to anger, but they've been few and far between.  Honestly, I have felt that way before ovarian suppression, so it's not drastically different. The biggest change I've noticed is the night sweats.  They're as intense and annoying as they were when they first came during chemo.  Right now I'm still trying to give my body a chance to regulate itself.  If they continue to be a problem, I'll ask my doctor for help in managing them.

My hair is coming in, slowly but surely!  It's still super gray, but all in all, I won't complain.  I'm hoping to continues to grow quickly and thicken up.  I'm still using the mermaid hair spray I made with essential oils.  My friend Kristi gave me Sugar Bear Hair gummies to promote hair health, too!  They're super yummy!  Santa brought me a hair serum to try and I like it!  It's so easy having short-short hair... boys have it easy!  Wash.  Condition. (I don't even know why I condition my hair?! Must be a habit.) Towel dry.  Run product through hair.  Done.  It's ridiculous!  I've said all along that I will go back to my long hair because I miss curls, braids, ponytails, etc.  But I've decided that I'm definitely going to try to enjoy the journey back to long hair.  I may get there in a few years or I may take longer.  I've been saving hairstyles I'd like to try along the way, so I'm gonna have fun with it!

 Just like always, my family has found plenty of adventure and fun to keep us busy!  One of the many things I've learned through this journey is to take advantage of opportunities as they arise.  I can be such a type A personality.  I like things a certain way and if things don't seem perfectly ideal according to The Kristy Weaver Way, sometimes I get nervous about participating.  But I'm learning to enjoy things, even when they make me nervous.  I'm learning to value fun, even if I'm going to be out later than I'd like to be or my girls are going to get out of the little routine I prefer for them.  And it's been good for me!  I don't really do New Year's Resolutions, but this year, I hope to loosen my grip on the wheel of life and see where the road leads.

Dressing like pioneers at The Pony Express Museum in St. Joe

The Fabulous Five

For now, my personal prayer requests are much less urgent, but because I have so much prayer support, I'll put them out here.  I do have a few friends who could use some intense prayer, so if you're willing, please pray for them as often as you think of them.

• Please pray for my friends fighting cancer.  Sarah.  Gavin.  Cathy.  
• Please pray for the family of my friend Janis.  She lost her battle with cancer, but won the ultimate prize in heaven with our Father.  Her family is the sweetest and please, just ask God to cover them in peace and comfort.  
• Please pray that my cancer does not return.  Ever.  
• Please pray that my body would regulate the side effects from my longterm hormone suppression without the need for medication.  

   

The Next Phase...

The next phase of my treatment begins this week!  I'm somewhere between "Let's get it done!" and "Do I really have to do this?".  But all in all, just like with chemo, I know that you have to start the race in order to get to the finish line.  So let's get started!

A lot has transpired since my last blog post.  I'll give a short recap for those who are interested.  After meeting with my surgeon, Dr. Wagner, on Halloween, I left with the understanding that my future treatment plan included radiation and ovarian suppression.  I was considering the clinical trial for radiation, which gave me the option of having 4 weeks of treatment instead of 6 weeks.  But when I went to my oncology appointment, my oncologist, Dr. Satelli, explained that she did not think I was a good candidate for radiation or ovarian suppression.  I was super confused, as I'm sure you can imagine.  Over the next few days, several conversations took place between my doctors, as well as a team of doctors at what they call "tumor conference".  The team decided that I would benefit from both radiation and ovarian suppression.  So back to where we started!

My surgeon recommended I meet with a radiation doctor, Dr. Mitchell, who is fairly new to KU.  She moved here from MD Anderson (a major cancer research hospital).  Because of all the confusion/conflicting opinion about whether or not to radiate, my surgeon thought I should sit down with  the best of the best.  And she was right!  I adored Dr. Mitchell and she helped me to understand why it's so important for me to add radiation to the next phase.  In short, a woman of my age with a tumor of my original size/type has a 25% chance of reoccurrence without radiation.  If I could insert that emoji with the big eyes here, I would!  Holy cow!  1 out of 4 women in my situation will have reoccurrence?  I am not at peace with that number.  Luckily, neither was my surgeon and neither was this doctor.  Women in my situation who receive radiation treatment have roughly 9% reoccurrence rates.  So 9% is closer to the number I'm looking for, but still not ideal.  By adding 10 years of ovarian suppression, my chances for reoccurence are at about 4.5%.  While that number is still higher than I'd like it to be, I feel strongly that it's important for me to do everything I can to decrease my chances of this coming back.  If I have to fight breast cancer again, I will absolutely put the gloves back on and enter the ring.  However, if I can avoid ever going through this experience again, I would like to do so.  

Dr. Mitchell was so thorough with me, explaining that the radiation situation with my dad (see previous blog post) is not likely to happen to me.  It's not out of the realm of possibility, but my chances are less than half a percent.  We discussed the 4 week trial in great detail and because she is co-sponsoring the trial with Dr. Wagner, she could not offer me her personal opinion.  But I decided to go for it!  I mean, if Dr. Satelli doesn't even think I need it and these two doctors think I do, then surely 4 weeks is enough, right?!  Both Dr. Wagner and Dr. Mitchell told me that the preliminary data from the trial is really good.  All the numbers look better in the 4 week trial than in the 6 week standard of care (reoccurrence rates are lower and side effects during and after treatment are also lower).  

Because Dr. Mitchell practices in Kansas and I want to get my treatment up north, I will have 2 radiation oncologists working together for my treatment plan.  A few days after my meeting with Dr. Mitchell, I met the other doctor and got all set up to begin radiation next week.  I even got 5 new tattoos.  Eek!  I've never wanted a tattoo, but now I have 5 tiny black freckles they'll use to line up the machine properly.  After that tiny tattoo experience, I feel it's important to note that I never intend to get a tattoo for fun.  I mean, seriously, all of you crazies... that needle is not a joke!  Once I begin radiation, which should be Tuesday or Wednesday of this week (we're waiting on insurance) then I'll receive 20 treatments every weekday, until it's done.  I'm really hoping to be done by Christmas, but if we don't get started until Wednesday, that'll throw me to December 26th.  Come on insurance!

So the other big part of the next phase of my treatment includes ovarian suppression and tamoxifen for 10 years.  Because my tumor was fed by estrogen, it is important to block any remaining cancer cells from feeding on any estrogen.  Hopefully there are no cancer cells left, but there could be, we just don't know.  From what I understand, the tamoxifen works as a blocker, not allowing cancer cells to feed on the estrogen in my body.  Some doctors think tamoxifen is enough protection.  Dr. Wagner does not agree, she feels that it's very important to suppress my ovaries, which prevents them from producing any estrogen at all.  So rather than relying on the tamoxifen alone to block the estrogen, we're going to stop the estrogen plant altogether so that any cancer cells feeding on estrogen will die of "starvation".  I'm sure this is a very basic and probably oversimplified version of things, but it's all I know!  

I met with the nurse practitioner to get educated about the ovarian suppression.  And to be honest, I'm the most nervous about this part of my future treatment plan.  Without going into all the details, I will be in medical menopause.  It will happen to me overnight.  In fact, they said some women say they wake up the next morning and feel like they've aged 15 years.  The slowly dissolving pellet they will place in my lower belly each month will keep me in medical menopause every month for the next 10 years.  I could (probably will) struggle with hormonal issues, especially for the first 3 months or so.  The issues include mood swings, depression, hot flashes, night sweats, vaginal dryness, low libido, weight gain, bone loss, etc.  I'm hopeful that my body regulates itself quickly and efficiently because I am pretty nervous about some of these side effects.  The biggest fear I have for the short-term is the mood swings.  I even told the nurse practitioner that I'm usually a pleasant person and I enjoy life.  I'm worried that I will swing between sadness and rage so often that I will struggle to feel joy.  She told me to be patient with myself and do my best to give my body time to regulate itself.  There are medications I can take for nearly all of the side effects listed above, but she said it's best to try to make it through the first 3 months or so because many of them may not be as severe as my body gets used to the lack of hormone.  What most women experience slowly, over the course of several years, I will experience in one day.  She likened it to hitting a hormonal "brick wall".  It's likely that I will feel upside-down for awhile.  That being said, I've talked with several women who have had hysterectomies, which is a similar experience, hormonally speaking.  Many of these women said they had little or even no side effects after surgery.  I'm also hopeful that because I've been in medical menopause through my chemo, maybe my body won't be as shocked as it would have been otherwise.  When I asked the nurse practitioner if most women in my situation make it through the 10 years, she said some do and some don't.  It's up to me how long I want to continue ovarian suppression, but the research shows that 10 years is the most effective.  Right now, that is.  My endocrinologist who I see because of hypothyroidism reminded me that medicine is always changing and they could come to me in 3 years and say that research shows that 5 years is sufficient.  He also said he thinks I'm doing the right thing and he fully believes my body will regulate itself in time.  

So, to stay true to my style of sharing everything, I'll be completely honest and share that I'm worried about the next few months.  I'm worried that I'll be a terrible mother because my moods will be all over the place.  I've dreamt my whole life of raising a family and now that I'm here, I worry that I won't be able to do it the way I want to because I'm cranky.  I worry about the effects of my ovarian suppression on my marriage.  I worry that my job will be even more stressful because I feel like a tornado inside.  I worry that my bones will deteriorate by the time I finish 120 injections.  But as I've gotten used to the idea, I have decided a few things.  Whether or not I'll experience these side effects and the degree to which I'll experience them is not within my control.  I may have to work really hard to choose my attitude, but I can do my best.  I've already discussed my potential crankiness with my girls and Ryan.  I'm going to allow myself the grace to take a time out when I need to.  I also know that God has not failed me yet.  Not even once.  So I have complete faith that He will see me through this potential trial, just like He always has.  I will take this experience one day at a time, maybe even one moment at a time.  Those are the only things I know.

The other hormone at play in my cancer is the HER2 hormone.  I've already shared that I'll receive herceptin infusions until June of 2019.  Once I finish the herceptin, I can have my port removed and then I'll take an oral pill that blocks the HER2 hormone for another year.  But I did receive some bad news about the herceptin infusions.  When the tumor conference met, they decided that since I responded so well to the drugs given at chemotherapy, they wanted me to continue the perjeta along with the herceptin.  That's the icky diarrhea drug.  As if that isn't bad enough, because I haven't been on the perjeta for the last 2 infusions, I have to get the "loading dose" again.  In case you forgot, I learned after my first chemo that "loading dose" is code for "double dose".  Yeah.  The last time I had the loading dose of perjeta, it was not pretty.  Not even a little bit.  It was the worst 3 weeks of the entire chemo experience.  And now I have to do it all again.  Except this time, my bowels are already loose because they still haven't recovered.  And, to add insult to injury, the carboplatin and taxotere chemo drugs constipated me, so they always worked against the perjeta.  But now, it's just me and my Imodium!  Actually, I'm going to take the prescription lomotol because I just don't think I'll make it without something stronger.  I've already decided that if things aren't going well, I'm going to request to get IV fluids.  And because I'll need to be able to drive to the hospital to get radiation every day, I have to be able to leave my house.  Eek!  What if I have another experience like the Dollar General Hell I experienced earlier?!  Dear Lord, please, please help me.  Amen.  I've already decided that it'll be what it's gonna be and I'm just gonna roll with it.  There isn't any other choice!

The last thing to report is that I'll be returning to work on December 3rd.  Hopefully!  That gives me one week to get used to the ovarian suppression and to get my bowels under control after the perjeta loading dose.  I should also have nearly a week of radiation under my belt by then, too.  It's going to be a crazy time, but I'm just gonna bite the bullet and get back into the swing of things.  I hope the students are able to handle Mrs. Weaver without estrogen! Heck, I hope I can handle Mrs. Weaver without estrogen!  Haha!

So if you see me after Monday and you think I seem off, please know that I'm trying.  I apologize in advance if I'm not much fun to be around or if I lose my cool and say something I shouldn't.  This is a learning time for me and I'm hoping I catch on quickly!  

In an effort to document my journey for myself to look back on later and for others who may walk this road in the future, I wanted to share how the hair re-growth phase is going.  I've been using RenPure shampoo and conditioner with biotin and collagen.  I've also been spraying my hair with an essential oil concoction dubbed "Mermaid Hair" which is a mix of rosemary, cedarwood, lavender, witch hazel, and water.  I'm not sure if it's working or not, but it sure smells good!  I've also tried taking biotin gummies, but they made me feel nauseated, so I ditched them for now.  

The picture below is 5 weeks post-chemo.  It's actually deceiving to say "5 weeks post-chemo" because really this picture was taken 8 weeks after my last infusion.  Since my hair continued to fall out for the entire chemo cycle (3 weeks), I didn't start counting weeks until after the chemo cycle was over.  

The picture below was taken after my last chemo cycle.  I hadn't shaved my head in a week and I never intend to shave it again!

This was taken on my last day of chemo.  My head was freshly shaved!

One last thing to share, in case someone needs this in the future.  I started using a scar softening oil about 3 weeks after my surgery.  To make it, I filled a 2 ounce glass dropper bottle with 40 drops of lavender, 40 drops of frankincense, and filled the rest with fractionated coconut oil.  It smells amazing and my scars look great!  I just massage the oil into my scars twice daily.  I'm supposed massage them twice daily anyway.  If it weren't totally inappropriate to post a picture of them on here, I would show you how good they look!  Haha!  

I have several prayer requests at this time, but I'll try to keep the list short and sweet so you can remember to pray for everything on it.  I sincerely appreciate your prayers, friends!

• Please pray that the cancer does not return.  Ever.
• Please pray that I experience few/no side effects of the ovarian suppression and that my body returns to a "normal" feeling quickly
• Please pray that radiation will be uneventful, both now and in the longterm future
• Please pray for an easy transition back to work for my family, my students, and myself
• Please offer a prayer of thanksgiving to God for all that He has done in my life and through my life

Post Surgery Update

Today marks 2 weeks since my surgery and I'm feeling pretty good!  I'm still sore off and on, depending on how I move and how much I try to do, but the soreness isn't unbearable.  I can manage it with Tylenol and rest.  I was just so glad to hear lots of good news when I came out of surgery.  She took 4 lymph nodes and all 4 tested negative for cancer.  Praise the Lord!  She also had no trouble getting clear margins, which is a giant blessing!  And from what she could tell, there was nothing wrong in my left breast.  All good news!  A giant relief!  The cancer was gone.  Finally!

Recovering from such a big surgery really hasn't been as awful as one would think.  When I first came out of surgery, my sternum hurt like the dickens.  In fact, I told Dr. Wagner that it felt like she jumped on my chest during surgery.  She said it was probably the muscles spasming from being scraped (ick!).  She prescribed a muscle relaxer, which helped immediately.  They also had me on a narcotic for pain, which I took for 3 days.  Aside from the fact that it made me itchy, I never really felt like I was in too much pain, so I decided the negative side effects weren't worth it.

Before surgery!
Bye bye, boobies!

After surgery!
Feeling surprisingly good!

For the first week after surgery, my mom and Ryan juggled taking care of me.  Ryan had me over the weekend, but my mom took most of the week off work.  I'm so thankful I had her here while I was down and out.  She did everything for me.  Got the kids ready.  Drove them to school.  Cleaned my kitchen.  Folded my laundry in my crazy Kon Mari way.  Did my dishes.  Played with Hattie.  Drove me around town so I didn't go stir crazy.  Let me take naps.  She is simply amazing!  Ryan has been amazing, too!  On top of doing all the household stuff I'm not able to do, he is slowly earning his nursing badge taking care of me!  Getting my meds.  Preparing the shower for me.  Drying me off.  Helping me get dressed.  Emptying my drains.  I had 2 drains (one on each side) to empty.  Ryan was in charge of that because I struggle with yucky medical stuff like that.  I think I could've made it happen, but Ryan was so sweet to me and said he didn't mind.  After just one week though, my drains were ready to be taken out and the dressings were removed.  I was really glad to have the drains removed so soon because they'd told me to plan to have them for at least 2 weeks.  But, in order to remove the drains, they told me they'd have to take off the dressing, which was a clear adhesive bandage over the incisions.  I was so scared that my incisions would pop open because they weren't healed up enough yet.  But they assured me that wouldn't happen.  They were right!  Nothing popped open and I was able to get a good look at my new chest.

Daddy holding the fort down with his little helper!

Snuggling with Hattie in my Healing Chair!
That mastectomy pillow was the best thing ever!
Thank you, Fran!

Once the dressing was removed, I was a little nervous to see what had been done, but truthfully, it doesn't look bad.  I actually kind of like my new chest.  The incisions begin under each arm (just below the armpit) and head in a pretty straight line toward the sternum.  The lines almost meet, but there's about 3-4 inches between them.  They're level.  They're symmetrical.  They remind me of my little chest when I was a little girl.  It's just me.

So far, I haven't had any feelings of sadness about my new body.  I haven't had any feelings of self-consciousness either.  Those feelings may come later, but for now, I'm really happy with my body.  I was careful to shield my girls from the icky after-surgery stuff, but as soon as I got the drains removed, Gracie asked to see my incisions.  Well, she actually asked why Daddy closes the door when he takes care of my flat boobies.  I explained that I was worried she would be grossed out or scared by my incisions.  She said she wanted to see them and that she wouldn't be grossed out.  So I figured there's no sense in putting it off.  I showed her my chest and she said, "It doesn't look bad, Momma.  It's not gross at all."  And that was it.  That was a week ago now and I can already tell that my "flat boobies" are going to become a normal thing very soon.  Even today, I had to take Hattie with me to get my first pair of transitional prosthetics.  When we got to the store, she just casually asked, "Can I play on your phone while you buy your fake boobies, Momma?"  I just said, "Sure, Hattie!  That would be great!"  What else was there to say?!

Yesterday was Halloween and my follow-up appointment with Dr. Wagner.  I must tell you that I think the world of Dr. Wagner.  From what I understand, she is the Chief of Breast Surgery at KU and she is a fantastic doctor!  I only had 2 appointments with her before surgery.  She's so busy that some of the surgical appointments I had were with members of her team, rather than directly with her.  I'm sure that's a normal thing in the medical world.  At both of my pre-surgery appointments, I liked her, but the word I would use to describe her would be "professional".  But after my surgery and at the post-surgery appointment, I found her to be very personal, as well as professional.  Now I really, really like her!

She came into the room yesterday with a big smile and told me she'd read my pathology report word for word, twice.  She also said that the report was about as good as anyone could hope for and that she was very, very pleased with the findings.  The pathology showed that less than 10% of the cancer remained after chemo.  That means that over 90% of the cancer was killed by the chemo!  She paused at this point and said that HER2 positive breast cancer (which mine was) used to be almost impossible to stop.  Even as recently as 10 years ago.  But because of the huge strides in research and medicine, they are now able to attack it aggressively with much greater success.  And that's exactly what they did with me, which is why the chemo was so aggressive.  Of the cancer remaining in my breast, there was a total of 9 millimeters of living cancer in clusters throughout the affected area.  The original living area was 114 mm (11.4 cm) in size.  She was super pleased with that result.  I was hoping for a "complete clinical response" which means 100% success, but Dr. Wagner informed me that in studies, the survival rates and the reoccurance rate are the same for anything with less than 10% of living cancer remaining as they are for 0% of living cancer remaining.  So I feel blessed and content with those numbers!

The pathology report also revealed that the 4 lymph nodes did not contain any living or nonliving cancer cells.  That means that the cancer never reached my lymphatic system, which is a good thing, too!  Sometimes the chemo will kill the cancer that has reached the lymph nodes, but there wasn't any cancer to kill in mine. Praise the Lord.

When I asked her how long she thought the cancer had been growing in my breast, her answer was sobering.  She said that HER2 positive breast cancer is a fast growing cancer.  The longest amount of time I could've had the cancer is 1 year, and she thinks that's stretching it.  The mass grew to be 11.4 cm in probably less than 1 year.  She also said that she is really glad I followed the treatment protocol she prescribed (chemo + surgery) because it has made this cancer survivable for me.  She told me about 2 patients she has that opted for surgery only and refused chemo.  One of those patients is now fighting metastatic cancer in her chest wall and the other patient has passed away.  She talked about how difficult it is going through the regimen prescribed, but that we know it works.  I told her that it scared me how quickly the cancer metastasized for those women and she reassured me that I am not in that group because I received chemo and because I'm continuing with the herceptin infusions.  It's also why I'll continue with the estrogen and ovary suppression down the road... because we know it works.

When the question of radiation came up, it seemed like there was never really a hope that I wouldn't need radiation.  Because the mass was so large to begin with, she would rather play it safe and add radiation to my treatment plan.  Studies show that it helps to prevent metastasis later.  Dr. Wagner would like to see me participate in a clinical trial she is co-sponsoring on radiation.  The trial calls for 4 weeks (20 doses) of a higher radiation than the current standard of care, which is 6 weeks (30 doses) of a lower amount.  The total amount of radiation exposure in the clinical trial is less than the exposure in the 6 week protocol.  When I asked her why I would risk getting less radiation, she explained why she is currently conducting this study.  In short, there has been a load of research done on this 4 week regimen compared to the 6 week regimen.  The bulk of that research has been done in Canada and the findings (over at least the last 10 years) indicate that the rate of reoccurrence is the same with both regimens.  However, the 4 week regimen has much fewer negative side effects during the treatment time and after.  Apparently the Academy of Some Major Medical Thing requires very stringent guidelines in the clinical trials before allowing a change to the standard of care.  So Dr. Wagner is sponsoring this trial through KU and several other doctors across the nation are doing the same thing.  Because of my dad's history with radiation, I am interested in fewer radiation exposures.  My dad fought oral cancer in 2001 with surgery and radiation.  Then in 2005, he developed angiosarcoma, which was caused from radiation.  I've talked with multiple medical professionals about this family history and no one believes it to be a genetic predisposition to respond to radiation in such a way.  But like I said, because of my family history with radiation, I am leaning toward participating in her clinical trial.  I haven't met with the Radiation Oncologist yet to verify that it will be an option, but Dr. Wagner deeply believes it is what is best for patients.  And because I trust her knowledge and experience, I am seriously considering that option.

When I asked about continuing the perjeta drug along with my herceptin, she thinks it's pretty likely my oncologist will want me to stay on it for the rest of the 12 months (till June of 2019).  I'm super bummed about that, but ultimately, if it gives me better odds of having more time with my loved ones, sign me up!  I'll just keep plenty of Imodium on hand!

The rest of the appointment was informative for me about continuing to recover from surgery.  I don't go back to see her for 8 months, which I thought was weird.  It seems like a long time!  But at that point, she'll make sure everything is totally healed and teach me all about self exams and what preventative care looks like for me in the future.  One thing is certain... no more mammograms!  Can I get an Amen?!!  We ended the appointment with big hugs and big smiles because we all feel really good about where I'm at right now.  Even though I'm not in love with the idea of radiation, I'm content to follow directions and get it done.  From what I hear, compared to chemo, it's a walk in the park.  And really, what's another small mountain to climb when my God is so big and He's carried me this far?!

That's about all to report for now.  I have my next herceptin infusion on Monday and I'll see my oncologist then.  I'm sure I'll get the perjeta then, too!  Better restock my toilet paper this weekend!  Haha!  I meet with my radiation oncologist on Wednesday to get that process started.  Hopefully, I'll begin radiation in about 2 weeks. I'll keep you posted on that!

Below are a few pictures of some of the normal things we've been doing around here while I finish kicking this cancer's hiney!

Pumpking Carving

My Cleaning Helpers!

Halloween Fun!

Pampering myself a little!
I love Color Street nail polish!
If you haven't tried it, you should!

Specific Prayer Requests

• Prayers of thanksgiving for the fantastic response to the chemo
• Prayers for wisdom to make the best decision about radiation
• Prayers for healing from surgery
• Prayers for my friends fighting cancer - Sarah, Janis, and Gavin

Preparing for Surgery

I want to share the details about my surgery with you, but before I do that, I have a favor to ask of you all.  A friend of mine, Sarah, is in need of your prayers.  As I write this, she is fighting an intense battle with cancer and like me, she has a young family.  I am asking God to cover her family with His peace.  I am asking God to heal her body and to display His power through her life.  Friends, when you read this, please pray for Sarah.  Please.  

As for my battle with cancer, the chemo phase is behind me.  And it feels so good!  Some of the side effects are still lingering (watery eyes, eye twitching, runny nose, some fatigue, belly issues) but for the most part, I'm feeling pretty good!  I even had my regular dentist appointment today and my dentist checked for dental issues caused by my chemo.  I'm happy to report that there are no issues!  My hair is kind of starting to grow back.  To be honest, I'm not sure if it really is or not?!  You'd think I'd know for sure, but I can't quite tell.  The gray is still growing like it was before, but I think there's some stubble coming in close to the scalp.  I'm preparing for the regrowth phase and I'm hoping it's not as awkward as I'm imagining it will be.  But just like the bald head, it'll be what it'll be.  I'm not going to stress about it.  But if you see me and you think I look like an 11 year old boy who needs a haircut, just know that I already know my hair is a mess!  

I had my first herceptin infusion today.  It was so nice to go into the infusion room and only have a 30 minute infusion of a drug with few side effects.  I guess the herceptin can cause my hair to grow slowly and be thin.  Apparently it can also cause belly issues, too, but I feel like it can't be as bad as the full cocktail.  I clarified with the surgeon about whether or not I'll have to be on the perjeta for the remainder of my 12 months (the beast that causes the diarrhea).  She said I will not have to be on perjeta if I had a "complete clinical response" to the chemo.  If I did not have a complete response, then I will have to get perjeta with each of my herceptin infusions... which is every 3 weeks till the middle of June 2019.  So y'all, I'm asking for prayers that the pathology report shows a complete clinical response to the chemo.  

My surgery is scheduled for this Thursday, October 18.  I'm as ready as I'll ever be to get it done.  I'm really anxious to get the cancer off my body.  I'm tired of lugging it around and just knowing it's there. For those who haven't read my blog, I'm having both breasts removed and I do not plan to have reconstruction anytime soon.  The surgery is scheduled for 8 am and I should be done in 3-5 hours.  I'll stay in the hospital for one night and should be released to come home early Friday afternoon.  My amazing sister and brother-in-law are keeping the kids for us because my sweet husband is staying with me overnight.  My mom is going to be at my surgery with me and then she'll help with the kids and our dog Thursday night.  My family really is the absolute best!  I am so grateful for all of them.  I'm also grateful for The Healing Chair.  It's an organization that provides breast cancer patients who are recovering from surgery an electric lift chair for their home.  I received mine on Saturday.  Ryan met the woman who used my chair previously.  She's only 3 weeks out from her surgery and she is feeling great!  It was inspiring to him to hear her story because he's been pretty nervous about this part of the journey.  I've got my lift chair in the living room and it's very comfy.  My girls think it's a Worlds of Fun ride!  The chair is mine for as long as I need it.  When I'm done with it, Ryan and I can help deliver it to the next patient.  It also comes with a journal so that I can read the story of the other women who have healed in my chair.  It's pretty cool!  

There are things about recovering from surgery that I'm nervous about, but none of them are major things.  I'm not looking forward to having the drains and having to measure the ick that comes out of my body.  I'm also not looking forward to the lifting restrictions that will prevent me from lifting Hattie.  I'm not thrilled about wearing clothes that button/zip down the front while I work my way back to getting my arms over my head and into my normal clothes.  I'm a little unsure about how long it will take me to get used to my flat chest.  I'm most apprehensive about the pathology report and knowing what my future treatment looks like because of it.  But since the pathology report is out of my control, I'm content to just pray about it and leave it with God.  I'm hopeful that my girls handle this surgery okay.  I expect they'll nervous to see me, nervous they'll hurt me if they come too close, and upset when I can't do all the things I normally do.  But hopefully those times will be short-lived and we'll be on the other side within a few weeks.  

I know many of you are praying for me often.  I appreciate your prayers so much!  Below are specific prayer requests.

• Please pray for an uneventful surgery and recovery.
• Please pray for a complete clinical response to the chemo. 
• Please pray that I do not require radiation.
• Please pray that this cancer has not and does not spread.
• Please pray for Ryan, Gracie, and Hattie.  Pray that they feel peace through this experience.  Pray that their faith is strengthened as they walk through this with me.
• Please pray for my friend Sarah.  

Chemo #6

The day has finally come!  My last chemo day and I'm so, so excited!  I know the recovery will be rough, but knowing that I don't have to do this anymore makes me very, very happy!  Even when I look ahead to surgery, I'm looking forward to a different mountain to climb.  This chemo mountain is getting old.  On another note, my friend Rachel is keeping Hattie for me several days this week and when I went to drop her off, she had her yard decorated for me!  Just for me!  I feel so special and so grateful for her friendship!

Kissing cancer good-bye!

Bye bye, chemo!

Steph brought me to chemo today!
It's nice to have my manager/agent by my side for the last one! 

The newest side effects to add to the list are the constant fatigue and watery eyes.  I just got my white blood cell count back and it's the lowest it's been through the entire treatment, so that explain the daily need for a nap.  The watery eyes are pretty annoying, but I know things could be worse, so I'll suck it up and take it.

I just met with my oncologist and she said that we'll know more about the future of my treatment after the pathology report comes back from surgery.  It takes about 2 weeks, from what I understand.  They already know I'll receive herceptin infusions every 3 weeks until June 2019.  They may also give me perjeta with the herceptin, if the pathology shows that it was effective.  The perjeta is the belly beast that causes all the diarrhea and heartburn, so I really don't want to have that.  Although if it helps to make sure this cancer never returns, then sign me up!  They are pretty confident I'll take tamoxifen for the next 10 years and may also require ovary suppression with that.  Again, the pathology will determine if I need the ovary suppression.  The last item that's up-in-the-air is radiation.  The pathology results will let us know if it is required.  Since I'm taking this journey one day at a time, I'm not going to worry about any of that for now.  I'll cross those bridges if/when I need to.

I also asked her how long the chemo side effects will stick around.  She said that everyone is different on the side effects, but 1-2 months is the norm.  I figure by the time I'm recovered from surgery, I should also be recovered from chemo!  Just in time for the holiday season, barring any setbacks.

To celebrate the end of my chemo journey I thought I'd share a few things I've learned that you might find interesting.

1. I didn't lose all of my hair.  In fact, I don't think I lost any of my gray hair.  Seriously?  Isn't that just ridiculous?  My sister has to shave my head every week because the gray just keeps growing.  I've lost almost all of my brown hair though.  I'm considering stopping the shaving my head, but I think I'm going to wait a few more weeks.  I'm hoping my brown hair returns soon.  
2. I didn't lose all of my leg hair either.  What?  I thought a perk of chemo was not having to shave my legs.  That's a myth.  To be fair, the growth has slowed dramatically, so I only have to shave every 2 weeks or so.  But still, somehow I feel cheated.  
3. Protein is key with chemo.  When I was first diagnosed, I met with a nutritionist and she said I needed 86 grams of protein per day.  I try so hard to get all that in, but I've had to rely on protein shakes and protein bars.  I have to choke down the shakes every time, but for 30 grams of protein, it's worth it.  Why do they have to taste terrible to me?  I'm happy to report, however, that my lightheadedness faded after I added a daily protein shake/bar!  And after I asked for all the prayers about it, too!  My oncologist said I can stop the high protein diet after I recovery from surgery.  Won't that be nice!
4. While having cancer sucks, the amount of love that comes into your life because of it, is simply amazing!  I'm so grateful for all the kindness you all have shown me.  God is good!  I'm grateful to Him for all of you!

Even though this last round of chemo made me more tired than before, our family found time to have fun together and celebrate Hattie's birthday!  That sweet girl has had a rough time with all this chemo-stuff, so she deserved a celebration... something to look forward to.  A swimming party with a bunch of family and friends was a perfect treat for her.  We all had a blast, but Hattie enjoyed it most!  Seeing her smile and play is my favorite!  I should also thank you all for praying specifically for Hattie.  She is handling this chemo much better than the last 2.  When I dropped her off with Rachel, Rylee, and Emma this morning, there were no tears!  And she even seemed excited to leave this morning!  Praise the Lord!

 Updated Prayer Requests:

1. Please pray that my recovery is speedy from this final chemo so that I'm ready to tackle surgery.
2. Please continue to pray for favorable pathology reports... whatever God decides that means is okay with me!
3. Please continue to pray for my family during this recovery phase.
4. Please add to your prayer list 2 friends, Janis and Gavin.  Both are fighting cancer.  I don't know them well, but I know they would benefit from your prayers.  

Chemo #5

Today is round 5!  I'm glad to be getting closer to the end of this chemo journey.  To be completely honest, I cannot wait until it's behind me.  With each treatment, a new side effect pops up to make the recovery just a little bit harder.  I've always judged how close I am to an anticipated date by the due date on the milk I buy.  This weekend, I got milk that expires on September 18... that's only 6 days before my last chemo!  Yay!  It's getting closer and for that, I am grateful.

My most recent new and annoying side effect has been some lightheadedness.  I've become anemic and it causes me to get moments of feeling lightheaded.  It's the weirdest thing because it happens a lot (several times an hour) when I'm up and moving.  When I sit, it will usually slow down quite a bit.  They're running my iron and B12 levels to see if I can take a supplement to help.  If neither of those are low, then I just have chemo induced anemia and there's not much they can do to help.  I just need to keep eating as much protein as I can.  Pray that the lightheadedness fades, please.  It's super bothersome and makes me nervous to drive.  It could be a long 6 weeks to the finish line if this one doesn't get better.

Lately the hot flashes have also intensified.  I'm in a drug induced menopause right now, so having no cycle is lovely!  But the hot flashes come at nighttime and they are no fun.  For all of you ladies who have gone through menopause already, I'm sorry I didn't have enough sympathy for you.  I get it now.  All night I go from covers to no covers.  Comfortable to sweating, then freezing.  I can't even count how many times I wake up at night because of it.  From what I understand about the future of my treatment, it may include ovary suppression, so I think the hot flashes could be here to stay for a while.  I'm hoping things normal out on that front before too long.

During this last recovery phase, I caught a cold.  I was pretty worried that the recovery was going to be brutal, but I was wrong.  My sister, also known as Dr. Hurt (haha!), got me all set up with over-the-counter meds to dry up all my drainage.  Sure enough, within just a few short days, I was feeling better!  Because of the cold though, I decided to stay off work until my chemo is done.  It's just not possible to keep hands germ-free when I'm working.  We all touch the same supplies constantly and my immune system is just too compromised.  Everyone has been so understanding.  I'm so grateful for the people at work who have been so supportive of me.  I'm also in debt to Mrs. Greene because she's subbing for me through it all.  She's amazing!

I'd also like to ask for some prayers for my sweet Hattie.  This chemo journey has become pretty difficult for her.  She really doesn't like to see her Momma down.  She's become quite clingy and sad dealing with all of this while the big kids are in school.  I have so many great friends and family who have helped me with her so that she's not at home, watching me recover (thank you to all of you!) but even still, she just isn't herself.  And that's hard for me and for her.  So if you would, please pray that God would give her His peace with all of this.  I'd love for her to leave the sadness behind as we finish up this crappy phase of her childhood. There is plenty to look forward to in the next few weeks.  She turns 3 and is having a princess birthday party at an indoor pool.  We're all looking forward to some family fun with our people!

This was hesitant Hattie this morning on the way out the door.
Sweet girl loves her Momma!

I'm going to cut this blog short because I'm a little sleepy today.  The steroids I take the day before chemo make it difficult for me to fall asleep at night.  The doctor said some people feel like getting up to wash the windows in the middle of the night.  Unfortunately for my windows, I don't have that much energy!  I just can't fall asleep.  So I might take a snooze during treatment today!

I wanted to say a big thank you to everyone who has reached out to encourage me about the decision to have a bilateral mastectomy with no reconstruction.  I sincerely appreciate the support and prayers of all of you.  While I can't say that I'm excited for surgery and figuring out what life will be like afterward, I am looking forward to getting this cancer out of my body and getting back to life without as many interruptions.

Updated Prayer Requests

1. Please continue to pray that I don't get sick (I did get a small cold virus this week, and I am thankful that my body recovered pretty well)
2. Please continue to pray that I won't require radiation after surgery
3. Pray for God's peace to overwhelm Hattie's heart
4. Pray that my lightheadedness subsides (quickly, if possible)
5. Pray that the faith of those affected by my journey would be strengthened

Decisions about Surgery

I’ve been praying about and asking for prayers about making a decision for surgery and reconstruction. And through our prayers, I have reached a decision that I am comfortable with.  I’ve had countless conversations, done quite a bit of Googling, and had a few appointments to get the information I needed to figure out what to do.  

It’s been a process to get to this point.  Even when I look at my blog posts from earlier on this journey, I have come a long way in my feelings and understandings about my current situation. At first, I viewed the idea of surgery as “may as well get rid of them both and get a perkier set”.  Back then, I was almost in denial about the fact that my body, after surgery, would never be the same.  I assumed that if I did reconstruction, it would replace what I currently have and the replacements would be almost better.  But actually, I was wrong about that.  When you have a mastectomy, they take all the nerves, along with the tissue, so there is no feeling left when they’re done.  It took me several weeks to come to the conclusion that a new, perkier set with no feeling was definitely not an improvement from my current body.  In fact, it took me several weeks to realize that no matter which reconstruction option I chose, it would solely be for cosmetic purposes. 

My only chance to have any feeling was to keep the left breast because they didn’t give me the option of keeping the right.  They shared with me that my chances of ever fighting breast cancer again with a double mastectomy (actually called a bilateral mastectomy) was 5%.  Because I never hope to fight this again, the idea of a bilateral mastectomy was appealing.  I asked lots and lots of breast cancer survivors, as well as people in the prosthetic industry and my surgeon’s assistant about keeping one breast.  The overwhelming majority said that many women feel lopsided when they keep one breast.  Many women who reconstruct just one side feel unmatched.  Knowing myself and my fondness of symmetry, I decided to go with my gut and reduce my chances of ever fighting breast cancer again.  I am choosing to have a bilateral mastectomy. I am completely comfortable with the idea of removing both breasts.  My girls have served their purpose.  I’ve nursed two babies and quite frankly, they’ve seen better days.  The recovery for a single vs a double is not much different. More drains, but the recovery time and restrictions are the same.  I don’t think keeping one breast will bring me any comfort as I go through the emotional experience of losing one.  I feel like there’s more to be gained by having a bilateral mastectomy than there is by keeping one breast.  So coming to this decision wasn’t too difficult for me and I’m at peace with it.

Once I decided to have a bilateral mastectomy, I then began the decision-making process of whether or not to reconstruct.  I began this process by researching the options available to me if I decide to reconstruct.  To get my questions (over 3 pages of them) answered, I spoke to several breast cancer survivors, as well as met with a plastic surgeon that works with my breast surgeon.  I quickly discovered that there are 2 main choices.  You can use your own body fat or you can use synthetic materials.  In either case, at the time of the mastectomy surgery, they place expanders on top of the muscle, under the skin.  These expanders are then inflated after your body heals in an effort to stretch the skin back to the cup size of your liking. When you’ve been “expanded” you go in for a second surgery to remove the expanders and put in the body fat or saline/silicone.  Each of those options has its own drawbacks.  If I chose the synthetic materials (implants) I would have to undergo replacement surgery every 10-12 years.  Since I’m only 37, I could be looking at 3-4 or more future surgeries after this.  If I chose to use my body fat (the procedure is called diep flap) it is a permanent fix, no future surgeries required.  That being said, the diep flap surgery is a big one.  The surgeon said they “slice you from hip to hip” taking more flesh around the belly button.  During surgery, they reposition your belly fat and reattach the blood vessels to create new breasts.  It is a rough recovery, taking about 6 weeks with several restrictions.  To be honest, none of these options sounded very appealing to me.  I didn’t like the idea of more surgeries and more recovery time.  I also didn’t like the idea of foreign objects in my body. I didn’t like the idea that if my cancer reoccurred in my breast area, it may be more difficult to detect because of my reconstructed breasts.  

A third option is to go flat, which means you don’t reconstruct at all.  If I chose this option, I could live flat on a daily basis or I could wear prosthetic breasts during the day to give me the curves of a woman.  I researched this option by making an appointment at a prothesis store and by talking to a young girl who chose this option.  I got her information through my breast surgeon and she was so kind to answer all my personal questions when we spoke on the phone.  I asked my surgeon to put me in touch with someone who is young, did not reconstruct, but regularly wears prosthetics.  I have a few connections with people who did not reconstruct who live flat on a regular basis, but I knew for myself that if I chose this option, I would not want to live flat.  After my research, it seemed that for my personal situation, the main drawbacks of not reconstructing were mostly related to my own insecurities. If I didn’t choose to reconstruct, I worried about the impact it would have on my marriage.  I also worried about how comfortable I would be in my own skin.  I didn’t want to emerge from the shower feeling like I need to get dressed quickly because my body would be something I was ashamed to look at or let my family see. I worried how it would affect my girls that their Momma doesn’t have a body like everyone else’s Momma.  

By the time I got this far in my research, I told Ryan that I feel like I have to choose between bad and worse, but I just can’t figure out which is bad and which is worse.  I continued to pray and continued to deeply examine myself.  I felt so much pressure to decide what I could live with for the rest of my life. But the plastic surgeon and my breast surgeon’s nurse both told me that I don’t have to decide right now. Whatever I choose right now can be changed later.  The plastic surgeon even said that if I’m not completely comfortable with my choice, then don’t reconstruct.  He said that it only saves you one surgery of placing the expanders if you opt to wait and decide to reconstruct later.  

I mulled around the idea of going flat for now and allowing myself time to decide if I want to reconstruct later.  And to be honest, this thought set well with me.  If I go flat and can’t get used my new body or don’t like strapping on my prosthetics, then I can begin the process of reconstruction at that time.  If I go flat now and find that I am able to adjust to life with prosthetics, then I’m in a good place.  Honestly, I have a very strong feeling that this will be the case for me.  I have never been a girl who shows off my cleavage, so I don’t think I’ll have trouble dressing my new body.  Additionally, I’m the type of person that takes the time I need to process new situations and then once I “get over” my hesitations, I never look back.  I’m pretty black and white in that way.  So I think it will take me some time to feel comfortable in my own skin with no breasts.  But I know that there will be a day when I am completely at ease with my breastless body.   I’m no longer worried about how my kids will handle the change in my body.  Gracie and Hattie have shown me through this journey that they’re pretty resilient.  I know my flat chest will be different for them, but similar to my bald head, I think they’ll get used to my new body.  Ryan has been so supportive and honest through this journey and decision-making process.  Early on, I worried that I could make the wrong choice and it would negatively impact my marriage.  But I quickly realized that I married a very good man.  He adores me and wants me to do what’s best for me.  While I’m getting used to my new body and trying figure things out, Ryan will be doing the same thing.  Because we’ve had some deeply honest conversations through this process, I know that I can be open and honest with him and that he can be open and honest with me as we figure things out.  And that is comforting to me.  I no longer feel worried about how going flat will impact my marriage.  We both know that some things will be different and we’re both ready to stick together while we get adjusted to a new normal. 

For those of you who’ve made it this far in the post, thank you for reading.  I wanted to put into words the process I went through to make this decision.  I’ve been an open book through this journey because it’s just who I am.  If other people are in this situation in the future and can learn from my experience, I am happy to share.  I know there will be people who think I’m making the wrong decision, people who will judge my choices.  And that is okay, but know that I am completely confident that I’m doing what is best for me at this time.  I appreciate all of your prayers and support in this journey so far.  Please continue to pray for us as we anticipate the surgery in late October.  I should have a firm date soon.  Please pray for Gracie and Hattie because I think the first few weeks after surgery will be harder on them than they are on me.  I’ll have more specific prayer requests as that time gets closer.