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.

Chemo #4

Today is round 4 and again, I'm ready!  It feels really good to know that today I have fewer chemo days ahead of me than behind me.  While this  journey hasn't gotten as horrible as I thought it would (yet), I am eager to get off the chemo rollercoaster.

The only reason I've been able to make it this far with a smile on my face has been because God has given me a spirit of confidence and peace on this journey.  He's also given me and my family an entire village of people to hold us up.  There's a song about being God's hands and feet... so, so many people in my life are exactly that to me.  God doesn't make us meals or take my girls for play dates, but you all do!  God doesn't send me kind texts out of the blue or stop me at church to see how I'm doing, but you all do.  God comforts me, through His word and through you all.  It's amazing and lovely.  A true blessing for me.  We sang one of my favorite hymns at church yesterday and the second verse brought me such comfort and truth.

How Firm a Foundation

verse 2

Fear not, I am with you, O be not dismayed

For I am your God and will still give you aid

I'll strengthen you, help you, and cause you to stand

Upheld by my righteous, omnipotent hand

For this blog post, I thought I'd update everyone in a different way than usual.  Rather than just sharing the side effects (which were mostly the same last round),  I thought I'd put together a list of things from the journey, so far.

1.  An Imodium a day keeps the diarrhea away (mostly).  For anyone who ever struggles with diarrhea through chemo, my secret weapon has been to take an Imodium after each stool.  It has been magic for me!  

2.  I am horrible at thank you notes.  Friends, I am a deeply thankful person, oftentimes thinking about the kindness shown to me at random times throughout the day and night.  I admire the gift that many of you have of sending cards and texts for no reason, other than just to let me know you care.  I feel humbled at how good y'all are at reaching out and embarrassed at how bad I am at reciprocating and/or showing gratefulness.  I have tried my hardest to keep up with thank you notes on this journey, but I am failing.  So I feel the need to say that whether or not you've received a thank you note is not a reflection of my gratitude.  Please know that I'm trying to get better at them, but it's not something I'm good at.

3.  My school and district are being super understanding and flexible with me now that I'm back at work.  Several of you have asked how this school year will go.  So teachers started back last week on Thursday and Friday.  I worked both days.  But because of chemo today, I'll be off work for the next 8 school days.  My white blood cells are their lowest until day 10.  For that reason, I'm planning to return to work on day 11 (next Thursday).  If I don't have any appointments or any icky days, I should be able to work for 7 school days before the next chemo.  My substitute is Mrs. Greene, our Pastor's wife.  She teaches preschool at our church in the mornings, but has always subbed in the afternoons.  She has graciously agreed to be available for my treatment/recovery days, as well as for a whole month after surgery.  I feel very fortunate to have Mrs. Greene covering for me!  I'm also super grateful that the district is allowing me to use my days, so I'll be paid for all the time I'm anticipating being gone.  I guess its a good thing I never used very many days for maternity leave (summer baby + job sharing baby = lots of saved days!)

4. My family has the best support system!  Seriously, the best!  I always knew that my village was awesome, but it became a bona fide, undisputed fact last night.  A very sweet girl from our church, Lillie, along with the help of her family and friends organized a spaghetti dinner and silent auction benefit to help our family with medical and other expenses.  To be completely honest, when they first approached me about having the event, I felt so humbled by the offer, but also a little bit uneasy about the idea.  Ryan and I have always been on the giving side of these types of events. The idea of having others give of their own time and money left me feeling unsure.  We have been on the receiving end of extreme generosity since I was diagnosed and to ask any more of our village was beyond my comprehension.  It's also important to note that another lesson God has been teaching me through this experience is that I need to be more generous of myself.  You all are teaching me that, showing me what it looks like.  But Lillie and her family are some of the most generous people I've ever known and they didn't let me stop them.  And I'm so glad they didn't!  The event raised over $6000, which is enough for 2 years of my out of pocket max for health insurance, but the money wasn't the only thing that overwhelmed us last night.  Ryan and I were both taken back by how many people showed up... for us.  I mean, it was so cool to see and feel the love from everyone!  It almost felt like our wedding reception!  Our cousin, aunt, and bonus aunt drove all the way down from Iowa/Nebraska to surprise us!  My handbell director from middle/high school drove in from Topeka.  My almost-birthday twin Kristy drove down from Maryville.  And a couple hundred friends/family in town were there to support us.  Y'all, it was humbling and awesome at the very same time!  It was a great way to spend Chemo Eve!  I found myself unable to speak multiples times last night because I was so overcome with emotion.  It's unlike me, but I was just blown away.  I'm so grateful God has placed me here, with you all, on this ride.  

5. Prayers work.  God hears the prayers of His people.  I wanted to share with you that after my last blog post, I wrote specifically about the fear that I'd been feeling and asked you guys to pray for me.  Within the next 24 hours, the fear had faded and I was back to trusting God to handle everything.  Thank you for the prayers.  They mean the most to me.

Please continue to pray for me.  Here are some specifics...

• Pray that I do not require radiation.
• Pray that God would lead Ryan and I to know what is best for me, reconstruction or going flat. 
• Pray for my Ryan.  He is handling all of this so well, but I know it's difficult for him.  Pray that he would be able to feel joy, true joy, despite the stress of this situation.  
• Pray that I will stay healthy, even though Gracie and I will be exposed to more germs at school.  

Chemo #3

Today is the halfway point of my chemo!  Yay!!  It feels good to know that I only have 3 treatments left!  I'm hoping the recovery after chemo #3 is like chemo #2.  I know the doctors have said that the side effects gradually intensify, but the days after chemo #2 weren't as bad as the first treatment.  I think that had to do with the fact that I didn't have to get the loading doses of some of the harsher drugs... but I'm not sure.  The diarrhea was more manageable the second time.  And actually, on Thursday of last week, I found a solution that I think might work for me.  Continue reading for too much information!  Skip to the next paragraph if poop bothers you!  So when my belly blows up, it usually comes on fast and I have to go like 5-6 times over the course of about 45 minutes.  It's the painful, gotta-get-there-fast kind.  I always take 2 Imodium, which takes about 20 minutes or so to take effect.  Then I have about 2 days of no stools (heavenly!), but on the third day, I'll have a solid poop and then about 8 hours later, the diarrhea starts again.  So... I finally got smart and noticed this pattern and decided to take matters into my own hands.  On Thursday, I had the solid poop and decided to take 1 Imodium right afterward, to possible prevent the belly blow 8 hours later.  IT WORKED, y'all!  My belly didn't blow on Thursday when it was "supposed to".  Then on Friday morning, I had a solid stool and took another Imodium right after.  Again, no blow.  Same thing on Saturday.  Same thing on Sunday.  So hopefully after my week of constipation (always days 1-5), once the diarrhea starts, I'm going to try this new system.  If it works again, I will consider myself a blessed genius!  My life will be so much better and maybe I can even go out to eat without being paranoid.  

Other than the belly issues, chemo #2 wasn't horrible.  Still tired.  Still dry/burned mouth.  Still heartburn.  Still insomnia.  Still chemo brain.  But on the whole, there's nothing I can't handle.  My family is so helpful and understanding, so I rest and sit out when I need to and I join in for the fun as often as I can.  

The thing that's been the most bothersome lately has been my own thoughts.  I have run into people who are fighting breast cancer again or breast cancer that's metastasized elsewhere and it really scares me.  My faith is strong.  God has given me this strong faith and His peace, but when I hear stories of reoccurrence and metastasis, it opens the door for Satan to come in.  Satan plays the same game with me that he played with Eve in the Garden of Eden.  I know God promises to keep me and do what is best for me.  I know He is near me and has a plan for me.  But when I hear these stories and imagine they could be future battles for me, that I could leave this earth before my girls are grown, it's like Satan is asking me, "Did God really say He will keep you?  Did He really say that?  Does He know what's best for you?"  Satan knows these deep fears of mine are a hot button he can use to cause doubt within.  And I will literally say aloud, "Get behind me, Satan.  I'm not doing this today.  I trust God.  I trust Him fully."  My friend Giermann sent me a devotional about not letting fear take over during this journey and it's been so pertinent and helpful.  I read the verses and trust God's sovereign plan.  I ask that you would pray for me when these times of fear creep in.  The fear serves no purpose for me and does not get me in the frame of mind I prefer to live in.  So please, if you have some time, could you ask God to give me a spirit of hope and trust when Satan tries to mess with me through fear and doubt.  I know the prayers you say are powerful and God hears them, so I would be very grateful if you'd pray for that specifically.  

I met with my surgeon's physician's assistant last week, along with the lymphedema nurse.  Because they'll be taking lymph nodes from my right side at the time of surgery, they begin educating patients about lymphedema early.  Lymphedema is basically arm swelling on the side of missing lymph nodes that cannot be reversed if let go too long.  Women used to struggle with this quite a bit, but much research has been done and around 2% of patients have permanent lymphedema now.  So this nurse will meet with me throughout this journey and for the next several years to make sure I'm not in the 2%.  

Meeting with the surgeons assistant was helpful.  I went in with 3 pages of questions and she was gracious to answer all of them.  She did mention that it's probably more likely that I'll need to have radiation than not, but we can't be too sure.  So I'm still asking for very intense prayers about not needing radiation.  If I need it, I won't fight it, but I don't want to have it.  I'm really trying to make my decision about double vs. single and also going flat vs. reconstruction.  I'm about 85% decided that I'll opt for a double mastectomy... I think the actual term is bilateral mastectomy, but you get the idea.  I figure what good is one boob?  I mean really, what am I gonna do with just one?  And if I can lower my chances going through this journey again, I would like to do that.  The going flat or reconstructing is a more complicated decision for me.  I've set up an appointment with a plastic surgeon to discuss the reconstruction options in August.  I'm hoping I have a better idea of what I might do at that point.

On Saturday, my sister and I went to Smithville to meet with the owner of Absolute Dignity, a store that sells prosthesis and other items to help women fighting breasts cancer.  Cathy was the sweetest, kindest woman and was so helpful to me.  If I choose not to reconstruct, I don't plan to live flat on a daily basis.  I plan to wear prostheses most of the time.  I asked the doctor about who I might talk to about going flat and wearing prosthetics.  She said there's really not a good place to go, but maybe see if I could get information at one of the stores like Absolute Dignity.  Considering that 40% of women don't reconstruct, I really find it upsetting that there's no place to really get informed about life with no boobies.  But I don't have time to worry about that right now.  For now, I'm thankful that Cathy was so open with me about her own journey and experience.  She let me strap on some girls and see how they feel.  It was great!  I left feeling like I could become comfortable with the idea of going flat with prosthetics if that's the route I feel is best for me.  I'll have to wait for the appointment with the plastic surgeon to see how comfortable I feel with those options.

There's much else to report from the Weaver house.  Life is not all about chemo and cancer in our home.  I've been working on redoing our dining room.  The table and china hutch were just too big for the space and we never used them, aside from holidays and birthday parties. So I've had a vision of changing the room to a craft room, office, dining room.  I started working on my plans in April, but then everything turned upside-down in our lives and I kind of put it on hold.  But spending so much time at home has made me even more unhappy with the wasted dining space.  So I asked Ryan if we could get to work on the redesign.  He was like, "Geez... even chemo can't slow you down!"  Nope!  So see below for the unfinished product.  The double desk pieces should be installed in the next few weeks... once I feel better after this treatment!  One desk will be my sewing desk and the other Ryan's work from home space.  

Enjoying dessert at the new dining room table!
We also played a family game to "break it in"!

The girls are still doing well!  We've been going on adventures and Gracie even went to church camp.  She cried and cried when she got home because she loved it there so much!  

Gracie loved her camp counselor, Bandit!

Please continue to pray for me.  Here are some specifics...

• Pray that fear does not become a regular feeling for me
• Pray that I do not require radiation
• Pray that God would lead Ryan and I to know what is best for me, reconstruction or going flat. 
• Pray for the upcoming transition back to school and work while juggling cancer treatment