Keeping It Real

I said I was going to keep it real on here.  So that's what I'm going to do.  It's been a rough few days and I'm not going to sugarcoat it. :(  I found out Tuesday that my  test results came back as a higher risk of recurrence, therefore chemo is the best option.  My Dr. did say that it is still my decision.  He said doing nothing at all, from this point on, gives me a 70% chance of this never returning. He said they work very hard to get some people to those odds alone.  If I did Tamoxifen alone, which is a hormone therapy I'll be on for 5-10 years, it would increase to about 75%, and adding chemo in would take it to 95%.  Hearing those stats, it was a no brainer.  But I'm not going to lie, it was a huge blow.  On Tuesday, I felt beat down. I felt like somebody had just pushed me off a cliff and I was plummeting to the earth below.  I had been feeling so good. I was getting excited to get back to work next week, and then this.  I cried. A lot.  I pretty much cried from about noon until I finally fell asleep at about 11.  I was mad.  I was so mad, scared, sad, afraid, frustrated..you name it.  Poor Cullen. He really kind of got the wrath of me that day.  Then I was mad about that because he's just been the absolute best, and couldn't be more supportive, loving and caring through all of this.  He did nothing that should've made me mad.   But I was just mad at the world that day and I kind of took it out on him. :(  So here is my public apology hun..if you're reading this.  I honestly felt like I was in an out of body experience. I didn't know what to do.  Honestly, it was my worst day in this whole journey, since the first day.   I knew this was a possibility, but I couldn't have even guessed I'd have felt the way I did.  I surprised myself. I guess I'd been holding it all together so great for about 2 months, and it just kind of all came crashing down on Tuesday.

But, I woke up yesterday morning, and through very swollen eyelids and very red eyes, I knew I had to buck up and carry on.  I was able to go to my fifth graders' track and field event.  For a little bit, I honestly didn't even know if I was going to be able to go.  I was still teary if I thought too much about it, and I knew people would want to talk about it, and I didn't know if I could handle it.  But, my kids knew I was coming, and there was no way I was letting them down.  Thank goodness it was a sunny day that required sunglasses.  As I walked into the bleachers where the fifth graders were all sitting, they all started chanting my name. It was the sweetest thing.  It was my second rockstar moment in this whole journey. ;) Those kids sure know how to make me feel loved.  My advisory team also chose purple for our team shirts, and they pointed out that they named themselves Purple Pride for me, since the Vikings are my favorite! They know me so well.  It was the best day, and it turns out it was exactly where I needed to be yesterday.

So chemo...what does this mean? I have about a 2-3 hour appointment on Tuesday to learn more, but for now, here is what I know.  I will have a 12 week treatment, with 4 rounds every 3 weeks.  Mine will actually be closer to 13 weeks, as we will take 4 weeks in between one so we can still take our family vacation to Florida we've had planned for months.  The kids would've been devastated to cancel. Me too!  He was very clear about me still going to that, and added that 4th week in to be sure I'm feeling pretty good then.  To clarify, the cancer is still gone.  My tumor is gone and it isn't in my lymph nodes.  But, he said cancer is sneaky and there is a chance there could be a cell that snuck off somewhere.  It could never do anything, or one day it could decide to grow.  This chemo will wipe out any of those stray cells that may have decided to hang around.  I will start May 29.  I have no idea what to expect. I've googled a lot, and you come up with everything under the sun.  The side effects are enough to seriously terrify a person, but one thing I've learned is that even if you're taking the exact same drug as someone else, it seems to hit everyone differently.  So I'm back in this limbo time of the unknown, and man that is the hardest part.  The things I'm most worried about is it being summer, and me not being able to be there for my kids. I'm so worried about being sick and tired and not being able to give them what they need when they're home all summer. I'm so worried about that.

Of course there is the hair loss as well.  My Dr. shared with me this new thing they offer, called scalp cooling.  They work with a company called Paxman USA.  I guess cold caps have been around for awhile, but they're getting a lot better at them.  Basically you wear this super, super cold, tight cap around your head during chemo.  It basically constricts your blood flow to the scalp so the chemo doesn't get to your hair follicles, or something like that.  But, like everything, it can range from very successful, to somewhat successful, to not very successful.  I'd most likely still lose some hair, it would just thin out.  But some people still lose a lot.  It just all depends.  It also is not a lot of fun throughout the process, as I can't really do much to my hair, as far as styling goes, no heat, no products, etc.  He said he often recommends this for younger women, especially with little kids, as it can help when mom still kind of looks like herself.  Beckett seems to be pretty worried about this, as we've talked about it a bit.  But when he clarified that my head will not fall of, because then my brain would fall out, he seemed a little better.  4 year olds...Poor little man. The scary part is, as I've done a little research, is it can be very painful for the first 10-20 while your scalp freezes.  It cools down to like -4 or something crazy.  They said it's like an extreme brain freeze, and then after it basically goes numb.  You also have to wear the cap super tight, so the chin strap can be pretty uncomfortable too.  Though there are plenty of women who say it's really not that bad. Like everything, it's all just personal to individuals. It's also not covered by insurance, so it's an expense as well.  But...it might just let me keep my hair, and feel a bit more like myself during this awful process.  I basically have until Tuesday to decide, and I'm pretty torn, but leaning towards giving it a try. If it's super awful, I can just stop after round one and deal with it.

So that's the update.  It sucks. SO much.  Though after processing, I know I will be so glad I did it when it's over.  I think if I wouldn't have needed it, I would've always wondered if I should have had it.  If it (Heaven forbid) came back someday, I think I always would've wondered if it would've if I would've done chemo.  So it's going to be awful, but I'm going to be okay. It will be the first summer ever, that I will wish it to go by so fast.  My apologies to everyone else for that. ;). The other big downside I was so sad about is that I'm stuck with these expanders for much longer now, as we can't do the exchange until well after chemo, due to risk of infection.  So that's that.  I will know more Tuesday, but that's where we are.  I'm feeling a little better about it, as I slowly come to terms with it, but there's nothing great about it at the moment.  I'm just trying to stay focused on that 95% cure rate, and  as a wise friend text me the other night, I'm doing this to hold my grandbabies one day.  That thought definitely helps.  I've got to look at this chemo as my helper and my friend, and not my enemy.   So if you'd like to keep praying for me, I just ask for prayers that this chemo all goes  smoothly, without any complications, that I have minimal side effects, and that I can still be a good mom to my kids this summer.  Thanks so much for all the love and support.

Chemo or No Chemo...

Tomorrow is finally the day where I will find out the next steps I will travel on this journey.  Chemo or no chemo...that is the question. I've been (somewhat patiently) waiting for the last two weeks on the results of the Mammaprint test, which will determine what happens next.  It's been tough to wait, but I've done pretty good at putting it aside and not letting it consume my worries and thoughts.  But now that it's tomorrow, I'm kind of in full on worry mode.  I am so, so hoping that I will be able to avoid putting my body through that. I hate to think of being so sick and exhausted all summer, and not being able to enjoy that time with my kids.  I'm nervous enough about the side effects from the other med I will have to take for 5-10 years. I'm so hoping I'm fortunate to avoid this chemo step.  Of course, if it's what has to happen, then it has to happen and I will battle through it, but man I hope we get good news tomorrow.  If we do get the news we're hoping for, I'm really hoping and planning to get back to work on Monday next week, if this week continues to go well. I felt significantly better last week, so I'm hoping things continue to move in that direction.

This weekend was amazing.  We walked in the Race for the Cure 5k Walk.  I was nervous if I'd be able to do it at this point, but it was great. I felt really good, and it was definitely more of a stroll, so we moved at nice and easy pace.  I had all of my family there, and I could so feel the love and support.  My brothers were both home.  My sister and Aaron were there.  My niece and nephew were home from school.  My cousin and her family came up, along with my aunt and uncle.  My parents were both there, and a dear friend from school with her husband and sweet little girl joined us as well.  The day was insanely beautiful.  Avery had designed a shirt for us all to wear for the walk, and my cousin had them made.  She was so proud, and they were adorable and so soft!  It was incredible to be part of such a supportive community.  You could just feel it.  I'm excited to make this a Mother's Day tradition with my family.  I know Cullen and I have plans to continue to do this with our kids, even long after I beat this nasty disease.  We already have big plans for next year, now that we know what to expect.  So if you'd like to join our team next year, keep Mother's Day morning open.  We were home by noon, so you still have lots of time for other Mother's Day plans as well!  You won't regret it.  It was amazing. I only wish I'd have done this sooner.

I'll share lots of photos of it here at the bottom. I did share a bunch on Facebook, so you might've already seen them, if we're friends there.

That's about it for now.  I'd so appreciate it if you could send some very specific prayers up for me tomorrow, that my test results come back low risk, and I won't have to have chemo.  I'm going to just leave it at that for now, and we will cross the other bridge later, if it comes to that.  Thank you all so much for the prayers, love and support.

Tissue Expanders

I've had a few questions about what these tissue expanders are that I've talked about a bit.  Here is a picture of what this is.

 They were placed in my chest after my mastectomy as the first phase of my reconstruction.  They will stretch the skin and the soft tissue, to make room for the permanent implants that will go in later.  Some are placed under the pectoral muscles and some are able to be placed over, depending on blood supply and other factors. I was lucky enough that it worked to place mine over the muscle, which makes recovery just a bit easier.  But, these guys are ridiculously uncomfortable. I'd done a lot of research of these, and asked a friend who has been through this if they ever get more comfortable.  Her answer was the best, in that they do get a little less uncomfortable.  They're really never comfortable, but less uncomfortable.  They are ridiculously hard, and sometimes it feels as if they're digging in, like an underwire bra might feel at times.  They also just feel really heavy, like I have on a bra that weighs about 10 pounds.  I can say they are already feeling a little less uncomfortable, and knowing they're not there forever helps.  But, I will be stuck with them for awhile.

I go in to get them filled up weekly.  It reminds me of these old shoes my brother used to have when he was little!  Pump them up!

I had my first fill last week.  They use a special magnet to find the port, and then use a needle to inject the saline into the port.  This video is a perfect explanation of what happens if you want to know more. It really is all kind of fascinating actually.  It didn't hurt, as my chest is completely numb, so I didn't feel the needle or anything.  But it was a super strange feeling.  It felt kind of like when you fill your car up with gas and you can feel it get a little heavier.  That's sort of what my "foobs" felt like.  (I've lovingly started referring to them as this..my "fake boobs...foobs."  I was super stiff and sore for about a day or two after, but then it was okay.  I started at 200cc right at surgery, and he fills them 50cc at a time.  I have no idea what the end goal will be.  I get to check myself out each week and decide! ;) When I get them to the size I feel good with, we will be done filling them.   I can't imagine getting them filled too many times.  I'm not looking for anything too big!  I will be very happy to have a bit smaller chest! I asked him last week what an average cc level is, that most people stop at, an he said that is tough to answer, as every person's body is different, so the same amount will look different on every person.  That makes total sense. So I will just wait and see what works for me.

After we reach the point where I feel good, then I have to wait just a bit for surgery.  At the earliest, it would be probably late July, as it can't happen too soon after my initial mastectomy.  That is if no chemo is involved.  If I have to have chemo, then I am stuck with these expanders for much longer, as they won't do the exchange surgery during chemo due to the risk of infection, so I'd have to wait until I'm all finished.  That makes total sense, but also SUCKS because it means I'd be stuck with these awful, uncomfortable things much longer.  But, I can tough it out if need be. Again, I know this is all a short window of time in the big picture, so I'm just trying to focus on that.  At the end of it all, I'll have some fabulous looking new foobs! Reconstruction can go on beyond that if you want, as there are lots of other things they can do if you choose.  They can do some fat grafting from places to add fat to the chest to make it more natural looking if wanted.  They can also do 3d nipple tattoos, which are actually really cool and pretty amazing.  There are all kinds of fun options! ;)   Right now I'm rocking no nipples, just big scars across that area.  I kind of think they look pretty badass though, and I might just decide to rock those. They make me look tough!  I could have elected to save my nipples during surgery, but that would have left some breast tissue, and after going through all of this, I didn't want to leave anything behind.  It just wasn't worth it to me.  They even sell rub on nipple tattoos at the store where I bought my mastectomy bras, so you can kind of try them out to see what they'd look like, if want that but don't want to do the 3d tattoos.  I laughed thinking about buying the nipple tattoos and somehow having Harper getting her hands on them, thinking they were just cool temporary tattoos and showing up to school with nipples all over her arms! Lol!  I think I'll spare her teachers for now and hold off on all of that for just a bit! ;). We will cross those bridges when we get there. For now, we will just focus on pumping these babies up!  I never thought that my 11 year old and I would be growing our boobs at the same time but hey...what can you do right?!

They’re Fake...

I saw this shirt a couple weeks ago and I couldn’t resist! I’ve found that humor has helped a lot the last few weeks. While obviously this situation is anything but funny, it definitely helps to try to find some humor along the way.  As I’m here again, in this window of time feeling sick to my stomach again worry as I wait on the test results to come back to determine the next steps, this guy arrived in the mail! So funny! I can’t wait to wear it proudly one day, with my actual fake ones, instead of these awful expanders. But I had to put it on today and try it out and I love it! Lol! It definitely made it easier to say goodbye to them when I knew they were trying to kill me! 🤣 I’m still recovering pretty well. My range of motion comes back little by little each day. My physical therapist I’ve seen has helped so much with this and I just love her. I get to go again tomorrow so that’s great! The nerve stuff is still crazy and hard to describe. Sometimes it is a burning, sometimes a zap type of feeling, sometimes itchy. It’s not so much of a hurt, just much more uncomfortable at times than others.

This weekend was busy with Avery’s first softball tournament on Saturday and an impromptu trip to see Garth Brooks. Some friends got some tickets for free and invited us along and it was amazing! We had the most incredible seats. Thankfully I was feeling pretty good that night. I decided if I end up having to do chemo, I might be too sick to do stuff like this for awhile, so I might as well take advantage of it now. I moved slowly, but otherwise it was great! There was a lady in the audience that had just finished up chemo for breast cancer a few weeks ago. He talked to her and played a song for her, and the entire stadium cheered for her. It definitely hit close to home and was pretty powerful. So glad to be there for that.  Sunday we got up and went to church and then I’ve been resting pretty much since lol! It took a lot out of me but it felt amazing to get out and feel a bit like a normal person. So that’s where we are. Things are going well and I’m doing my very best to try to stay calm and find some peace as I wait on this test,  and just trust in God’s plan for me for whatever comes next. I definitely do better with this some moments than others, just ask my poor husband lol! Please continue to say some prayers for good news, low risk test results and no need for chemo. Thank you all so much. I know I say it every time here, but there are just truly no words to explain the gratitude I have for all that people have done...from the prayers, meals, cards, gift cards, flowers, gifts, etc. I just can’t thank you enough. 💗💗

My new shirt! If you can't read it, it says: They're Fake (the real ones tried to kill me)

Ready for Garth Brooks..with a pocket full of Tylenol! 

The three little people that I will find this SO hard for. They were looking cute before church so I had to catch a quick pic!

Path of Peace

Chemo or no chemo...well we still don't know.  That is the big question.  We met yesterday with my oncologist that I will be seeing, Dr. Bloom.  He was wonderful.  He was super funny, personable, and knowledgable.  He's even a cancer survivor himself.  He spent a lot of time just chatting and wanting to get to know me.  He said, "Well shit, why are you here?"  Lol!  He said it's okay to swear.  When he left the room for me to change and came back, I told him as long as he said it's okay to swear, I'm kind of an overachiever, so I took it one step further from shit lol! He said that's okay too, and we got a pretty good kick out of it.  Then, in the first line of his report of his notes that he gave me, it says... "$#&*% You have breast cancer." Lol!   Then we got down to business.

He said that with Dr. Rueth removing the tumor, and with it being not in the lymph nodes, I'm currently sitting with no cancer in my body, as far as we know.  But...it was there and cancer can be a sneaky little thing.  Even though it isn't in my lymph nodes, there is always the chance that tiny, little microscopic cells can escape and travel around and hang out.  They could do that forever.  He said that right now, if I never did anything else, I'd have about a 70% chance of the cancer never sprouting up again.  He said the term, "Cancer coming back" is somewhat untrue, because when that happens to someone, it isn't as if it was ever really gone. It means there were those microscopic cells there, laying dormant, and then they just kind of find a spot to hunker down and grow.  He said I'm sitting in a pretty fortunate spot as they have to work very hard with some patients to even get to that 70% and I get to start there.  But obviously, we can do better, and that's what we're going for.  There are many treatment options out there that would get that percentage will up into the 90-99% range and that's what we’re shooting for.  The two main options to treat, are with a hormone therapy that I'd take for at least 5 years, or a course of chemo.  At this time, given the type of cancer I have, which is Stage 1, er+, pr+, her2-, not in lymph nodes, I have some options.  The one negative piece we've known from the initial biopsy, is that the tumor type is grade 3, which means the tumor contained more aggressive cells.  But even with that, the staining of them was very positive, and the fact it was caught so early, it was so small, it was removed and not in lymph nodes, is all very good news and that is why it is still considered stage 1.  They really haven't been too concerned about this from the start, so I have tried not to be as well.  The other downside is my age.  They tend to be a little more aggressive with treatment in younger women as well, but there is still one more test that will really let him know what treatment is best.

This last test that they're running will really determine the likelihood of this cancer having traveled somewhere else, and popping up again someday.  It's called the Mammaprint. It's amazing how far they've come. He said 20 years ago I would've been pumped so full of chemo, because that's just what they did.   They would tend to overmedicate, for fear of under medicating. But today, we're fortunate to be in a time with enough medical advancements that let us "appropriately medicate" as he called it.   That test takes about 2 weeks to come back.  It will either come back as low risk = no chemo or high risk = chemo... so now we wait again.

I'd been praying and praying for no chemo.  It isn't about losing my hair.  I know that's probably what most people might think at first, as I think that's kind of what we think of when we think of chemo.  I know that's probably the first thing I think of.  But there are SO, SO many awful side effects, that I would love to avoid.  I want to enjoy summer with my kids, not be sick, tired, and so uncomfortable going through it with these already ridiculously uncomfortable expanders in.  It would delay that process too, as they can't do surgery to exchange these for permanent implants until I would be done with chemo.  So that sucks too. I can't get comfortable with these things in my body.  But, honestly, if that's what it takes to get me to my highest shot of being able to be here with my kids and family for a LONG freaking time...then that's what will have to happen and I'll deal with it, even though it would really suck.

So in all, it will still a very positive appointment yesterday.  He gave me a big high five when I left. I should've been feeling great. But for some reason I was so down last night.  I just felt sad.  I don't know why.  I had a hard time falling asleep, didn't sleep well, and had that sick to my stomach feeling again the instant I woke up.  It sucks.  I pulled it together to help get my kiddos out the door, then when everyone left I had another little cry, a sad little party with myself for a few minutes, and then knew I needed to snap out of it somehow.

I got a great devotional from my friend Mary. It's by Sarah Young and it's called, Jesus Calling.  They're quick little devotionals and then they direct you to a few verses tied to that day.  So I put on my Lauren Daigle station on Pandora, and opened it up to today's devotional.  The devotional today was meant to be.

It is all about worrying.  I'm on this path for some reason. I don't know why, and I wish I wasn't, but here I am.  Last night and today, I kind of wasted it worrying and dwelling on something that is completely out of my control.  I even just said to a friend last night, that I wish I could just fast forward through this all.  While there is some truth to that, I can't wait for the day that this is in my past. I also know I can't let it destroy my present days.  They are so precious.  I'm here now, in these moments and these days with my kids, my family, my friends.  This is my now, and I need to try to find some peace to make the best of it that I can.  Some days obviously it's easier than others, and some days I get a little wake up call like this, and it was just what I needed.  

When I finished reading the devotional and I turned to Luke 12:25-26 and it says "Can any of you add one moment to his life span by worrying? If then, you're not able to do even a little thing, why worry about the rest?" 365 days of devotionals and this was today.  I'm pretty sure this was God's way of telling me this morning - Chill...I got this.  I got you.  Stop worrying and trust in Me.   So, that's what I'm going to try to do.  I'm going to try my dang best to relax.  If the test comes back as high risk, and chemo is the best plan for me, and will give me the best chance at a cure to be here with my kids and family the longest, then that is what is supposed to be. If it comes back as low risk, that will be great news and I will be thrilled knowing how lucky I am to get such an amazing prognosis, without having to put my body through that.  So God, I'm doing my best to listen and just chill, and trust that You've got this, and no amount of worrying on my part is going to change anything today.  Please direct my steps and help me along a path of peace.