Next Plan: Treatment – & more test results…and me breaking down tonight
So, pretty much my entire left side of my clothes are wet right now…I’ll get to that at the end of tonight’s blog.
Yesterday I was so excited to meet up with my oncologist again, Dr. Chowhan. Learning my treatment options and what’s to come, what’s the plan..all that..I like that. As much as I LOVE to fly by the seat of my pants..I love to plan. I like to know ahead of time what I’m up against so I can educate myself (properly..no more midnight internet searches…ugh). So we head to The Cancer Center of Indiana this morning for my appointment. This appointment was a follow up to many things. Today we would find out what my treatment would be, results from the BRCA genetic test, results of my CT scan (didn’t tell you guys that one cause I didn’t want to cause worry..I get migraines often, so I asked Dr. Berg (my general surgeon-at the post op follow up visit) if we could get that checked out as well).
I go through all of the mandatory check-in procedures..weight, blood pressure, pulse, temperature, blood count and then the paper gown to put on..then sit and wait. Man, have we learned a ton of patience since November.
When Dr. Chowhan enters in the room, I am instantly soothed. I have loved this man from the first time I saw him. Not a weird way, a very nurturing “gonna take care of you with all of my patience and extreme knowledge” sort of way. He has this ambience, an aura if you will, around him that just makes you feel better. Here’s a photo of him and I from this afternoon 
By the way, not only is he the Medical Director at the Cancer Center (which is a part of Floyd Memorial) he is also the president of the Oncology Society! I am very happy to have him as my chosen oncologist.
Why I’ve been looking forward to meeting up with him again, is basically for clarity. I have an extensive cancer team, but since he is the oncologist and will be help healing me during my chemo treatments, I wanted to know every spec of detail in his brain about what he thinks about me and my breast cancer.
Let me sidetrack for a moment…going into this, I had no idea even what an oncologist was. I had heard the term before, and just wasn’t really sure anything more than something related to cancer…What an oncologist is, is a doctor who is qualified in diagnosing and treating cancer.
His explanation to me was like this (in my words of course..lol): “The invasive cancer that was found in your tumor was so small, we would normally STAGE this cancer at a “1″.”
(Remember back a few posts me telling you I have stage 3 cancer??!! frick ) ”..But, this tiny bit of cancer has spread into your lymph nodes..which is rare. Stage 1 cancer in a 60 year old woman is not the same stage 1 cancer in you. So this we will be treating differently. Because of your age, your hormones and metabolism are so much higher than of a 60 year old, that cancer spreads and grows and all of that much, much faster-making this a very aggressive type of cancer. What we would normally do in this scenario with an older woman, would typically be radiation to your lymph nodes (since they already removed all of my breast tissue). But again, this is a different and more rare type of cancer we are facing. Removing the lymph nodes is how we want to treat this because of how aggressive this cancer is at your age.”
I have been wondering how many people out there have been wondering about this about me…I wonder if anyone thinks about all of my decisions as radical. Removing a healthy breast, “just incase” the cancer goes to the other…I doubt many would wonder this about my choice of reconstruction…but now I wonder how many out there will be thinking how radical this is for me to have all my axillary lymph nodes removed. Now understand that if anyone does have a query about my choices, I am fine with that. But in the end, please remember these are my choices. I am not going into this blind folded. I am like a sponge and reading EvErYtHiNg I can about cancer in general. I am totally on board with MANY holistic approaches to nearly anything in life (I went to school for massage therapy!) but when it comes to my cells mutating like crazy…I honest to God do not believe that changing my diet will change this. I don’t believe prayer will stop them from mutating. What I do fully believe in is where God is laying my path out for me. He is holding my hand and guiding me to all of my doctors who HAVE the best knowledge and medical capabilities for ME. I believe eating healthy and certain foods, DO help you stay strong, alert, mobile, etc..I believe in exercise to keep your body healthy (HOW FREAKING BIZARRE IS IT THAT THIS SUMMER I RANDOMLY AM LIKE>>”Hey Alyssa, Let’s go running nearly every single stinking day!!!???”) I believe everyone’s prayers are helping my healing process, helping all of my family keep a calm mind and trust in each moment..that everything WILL be fine. God has a reason for me. I am a hard-ass fighter and He knows this. I have a purpose here on this earth and I am fully aware of this now loud and clear..My body is ready for this challenge, and I am up for it. I don’t want to call it a “fight” necessarily…because like I stated in an early blog entry..that these are my cells. This is my body. What it is doing to me isn’t trying to harm me…for some reason, it may be trying to make me have super-powers and my body just isn’t reacting they way they want. Sorry to say cells, breasts and lypmh nodes…I am choosing to remove you so I can have my “super-powers” as a Mommy for a very, very long time.
Okay…long winded there..Let me show you a photo of my incredible nurse navigator, Kristy Helm…who really is the freaking GLUE of all of this. She is the one to set in motion ALL of my appointments, calling each doctor/nurse corresponding schedules and getting me in to my appointments as fast as possible. Kristy, I love you too. Please, if you have a moment, read this beautiful article about how she becomes each patient’s advocate and point person.
RESULTS!!:
BRCA genetic test: NEGATIVE
CT Scan of the Brain: NEGATIVE
Today’s blood test: Anemic
Type of my cancer: Paget’s
EFF YES!! What I was facing with the BRCA test IF it had come back positive, would be to have a hysterectomy. WOW. I know right? It’s because that type of gene if you have it, and get breast cancer…it goes hand in hand with ovarian cancer..Enough about that, I get to keep my baby maker and I’m pumped!!!
Treatment: 4 weeks after the removal of my lymph nodes is when I will begin my first chemo treatment. This is what chemo is: Chemotherapy (also called chemo) is a type of cancer treatment that uses drugs to destroy cancer cells. Basically, poison. This is an awesome site all about chemo and is laid out nice and simple if you would like to read more in depth about it. Click here
I also have a very angry lymph node under my right armpit. If you were to take a golf ball and walk around with it there all day, and sleep with it..that is what it feels like. It’s big. This more than likely occurred after the bi-lateral mastectomy. BUT, Dr. Chowhan wants to get an ultra-sound of it to see if it is fluid filled (good!) or solid (bad..more icky cancer). Either way, next week sometime will be my surgery of the lymph node removal. Next week, Monday the 14th, is also my 28th birthday! There was no doubt in my mind I would be cancer free before then…but again..God has His plan for me.
SO…with all of this positivity I guess you are reading from me tonight..You wouldn’t guess I had a severe breakdown. Bad. Worst in a long time. Just built up all day, and I’m not sure why. I guess honestly, the human side really needs to come out..I’m honestly still scared and Bj told me he thinks I may be ignoring that fact about myself, tonight when he found me in the bathtub tonight…yes. The bathtub. I went to the bathroom because I felt that deep, drowning wave coming up..if you have depression – you know exactly what wave I’m talking about. It’s inescapable. So I sat on the floor and went to pinterest to try and read all of my positive bits that inspire me…but it didn’t help. The wave was really strong. It was coming at me very fast..I started to cry. I started to really then cry hard. And it hurt. My “breasts” are still tender and my chest still aches. So crying, you use a shit ton of muscles all up and around there…I needed to get this wave out. So I put a song on and got into the tub, fully clothed and curled up and bawled the shit out while listening to one, in my opinion, of the most beautiful song’s in the world…”After the Storm” by Mumford & Sons. This song shouldn’t really make anyone sad, but I’m an emotional wreck..and Marcus rips through my soul when he sings. Please, please listen to this song for me. The lyrics go through as he sings.
“And I won’t die alone and be left there.
Well I guess I’ll just go home,
Oh God knows where.
Because death is just so full and man so small.
Well I’m scared of what’s behind and what’s before.”
My friends…up until tonight was the first time I have “for real” thought about myself dying. I cried not about being afraid of death. But for my children. My husband. My parents, siblings, cousins, all my family and all of my friends. I cried for how sad you all would be. How many prayers you prayed for me. How hard you fought along with me…and somehow God would need me sooner….I can’t see my screen right now cause my tears are filling up again..but you get the gist.
Bj comes in (most of you know my husband as Will-but personally he goes by Bj) and finds me bawling in the wet tub. He thought the dogs were howling outside..I started to laugh, big snotty laughs. He asked if he could take a photo of me so we could laugh at this part later when I’m stronger. I am sharing this to show you how bad it gets…the depression..the helplessness. God bless this man who has been dealing with my roller-coaster for about a decade now…knew exactly how to snap me out of it..I’ve never, however, crawled into a bathtub like this to escape. I hated everything that has been happening so bad..I just wanted it all to end.
Here is me mid sob mid laugh at the whole thing..I’m insane, and it’s okay!..I hope no one shows up at my door and takes me to the hospital for words shared tonight..I’ve really got my depression in control, believe it or not…just the cancer wave and everything really, really fcking hit me hard tonight. Hence, why my entire left side was soaking wet. I didn’t care that the tub was wet
And there will come a time, you’ll see, with no more tears.
And love will not break your heart, but dismiss your fears.
Get over your hill and see what you find there,
With grace in your heart and flowers in your hair.
47 Responses to “Next Plan: Treatment – & more test results…and me breaking down tonight”
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Thank you for this. Thank you so much for sharing. I am praying for you and your family.
God bless you Alyssa!!
You amaze me….simply amaze me with your strength, honesty, will….everything. Thank you for being real about this. It isn’t easy to talk about…16 years later for me and I still get misty when I think about it. You have so many pulling for you and we will continue to do so.
ALYSSA
I love you and you are strong.
Its hard to read this as a cousin, but know that you have an HUGE army behind you, all ready to fight with you, and we will ALL help you through this battle!!!
P.S.
Uncle Ricky (my dad)
says stay strong, an he loves you too!!
Have a good night, and look forward to more updates!!
xoxo
-katie
you are incredible-no other words xxxxoooo
You are so much stronger than you know. It’s ok to cry, be mad, just curl up with your hurt. But you know you are going to make it, stay strong, let others help you, love, laugh and hug others a lot!
Oh Alyssa you are strong and that meltdown is normal. I may not have cancer but when having to deal with my mom having it, I have seen her meltdowns. She still has them and still gets the depression from the cancer. Hooray for the negative test results. That is a great thing. I have to say, my moms Oncologist and the nurses there all are great people. I think it takes special people to work in Ocology. I wonder if God sends them cuz they are so kind and caring and know just the right time to make you laugh. You are a great role model for women out there. Keep up the fight and take care. <3
I love you!!!! Depression at a time like this is very understandable. for the record Jeff’s aunt wishes she had both removed. I think you are amazing and perfect and doing every smart thing to keep yourself around for your babies for a long long time. I am following your journey daily. <3 bj is pretty great, too.
Congratulations on all the good news and congratulations on getting through all the bad stuff. Your honesty and candidness makes all of us stronger, in our own faith and day to day life. Your team sounds terrific! Happy Birthday to you too!! I love you!
Sing sing sing….your words and strength are your song. You are amazing and I’m so proud of you. Power to you my love.
I love you and don’t even know you.
Well said, well sung, and well cried! I’m only sorry it hurts so much to cry, cuz it has to be done! I’m also very glad wonderful BJ is there to take your picture and hold you. Just remember that it can only be how it is, and you can’t change any of it for other people, no matter how much they (we) love you. I thank you for sharing, but I will understand every moment that you can’t share also!
oh yeah, have a wonderful birthday, darling
Oh Alyssa, your tears are the beginning of your healing, so cry a river! We all know “you will get over your hill”. You are soooooooooo special!
Sending more angels to you:))
Again, I barely have words. We all care so much and appreciate you sharing this journey with us all. You are the strongest person I have ever “known”. Prayers continue sweetie!!!!
Yup, there will be bad days. Horrifically bad-ass days. Accept that they will happen & scream/cry/throw as much as you need to. You will “earned” every crappy, shitty horrible day. And then there will be the better, even good days. Grab those, hold on tight & enjoy each one. You have earned those even more. And your choice of treatment seems spot on to me- proactive. j
Wow! I just want to say that I just started following you. How incredible are you?! God definatly gave you a purpose! Keep fighting the fight! I have never had cancer but my aunt and grandmother have and im a mommy. So you have a very big soft spot in my heart. Thank you for being so honest and real in your blogs and I love your pictures… no matter how raw they are
You are a amazingly strong person. I had tears in my eyes as I read. I hope both of my children grow up having half the strength and courage you have! If they do, it means I was a successful father. God Bless you, and you will continue to be in our prayers. Stay strong!
Writing is so cathartic….. and yours is a gift to us all. Getting the tears and sadness out in the tub is something I understand and respect, especially when it hurt so much physically to do it! Don’t ever apologize for that. I love Mumford and Sons and the words hit home! I pray for your healing and strength every day. Keep the faith
Crying, singing, and laughing with you…
You bless my heart, girl! The part of crying for your kids, and husband, and family, and friends… Been there… Still here. Cancer is scary—no doubt about it. But it doesn’t rule over you! Your LOVE of life and all the people God has put it in stand strong. As you take it day by day, it doesn’t overwhelm you. My prayer for you is to know God’s peace through each step of the way, and to feel His presence in the scary and dark times as well as the sunny and good times. Hugs to you, my dear, and know that you are not alone. <3
Alyssa! I love you so much and think about you every single day and night! I know you will get through this, you are so freaking strong “physically & mentally”. I can’t wait until you get all better and I can visit you again and you can kick my ass in tennis like you used to every single time. I’ll just try not to hit it to Larry anymore.
Love ya
Depression sucks-I describe it as wearing the lead apron at the dentist’s office! Keep hanging in there!
CZ
Depression sucks-I describe it as wearing the lead apron at the dentist’s office! Keep hanging in there! Glad the tests came back well!
CZ
Thanks for the update Alyssa. I am sooo sorry that you have to go through this. You are a very strong person and will beat this. You are in our thoughts and prayers always. XXXOOO
You are a VERY STRONG person!! I have been following your blogs and getting updates from your Dad….sending love,prayers,hugs and kisses to you and your family. Keep up the fight,we all are here for you!! God Bless!
ps- I am sooo glad you got a patient navigator so someone else can do some of the work instead of you or your mom. You have better things to think about, like coloring with your kids, lunch, deciding between pink or green socks, bubble bath or shower, Ellen or Dr Phil, taking a nap…
If I’M crying about it then you CRYYYYYYYY all you need to. Love using Mumford to get through the good times and the bad
Thinking of you….
I am Vertualy Sending you BIG HUGS tight hugs . i dont think anyone of us think your crazy, we just want it to be all better just like you . over and done with . Just Hugging you Alyssa , and thank you for sharing with us , your amazing ,Praying for you every day .
You are simply the most beautiful, amazing young lady… I’m listening to your song as I respond to your blog… every morning I check on you just before work. Every night I check on you before I go to bed… I love you like a daughter. Hell, as close as you and Erica are, you practically are
May your day be a “GRACE”ful and beautiful as you…
Be strong sweetie this will all soon be a bad horrible memory. we used to think of chemo as pac man eating the bad cells. I will continue to keep you and your family in my prayers. I read a book lastnight that Deeana Favre wrote Dont go against me (or something like that) Not only did I read alot about Brett(who secretly I think is so hot) but she talked about her journey through cancer.It was a very intersting to read her take on it.
Lots of love, positive thoughts, prayers to you by the zillions! xoxoxoxxoox
Stay strong!
Your story is so heart wrenching and what a eye opener for us young ladies..I for one, just went in for a breast exam…and have never ever done one on my self, from this day forward I will be checking them often thanks to you. Be strong, keep up the fight, your going to win this with that great attitude you have!! Best of luck next week and I look forward to the update that says Cancer Free….
Alyssa, I remember my first day at the cancer center too. I walked through a door with a tiny sign on it that said cancer center. To me the sign was larger than life and I broke down in the middle of the waiting room! I looked around and of course everyone was staring at me and then I started to laugh. It was the weirdest thing half cry for the overwhelmingness of it all but a half laugh for how rediculous it seemed I was there! Today I look back and think geez lady get a grip. But after 2 months of tests and waiting and yes the precious patience it was bound to happen. I think of you everyday and I KNOW what you are going through. I was 28 snd my daughter was 5. My concern was never for myself but for her. Aweso e post and blog!!!
Alyssa, Be happy, be sad, be excited, be mad. Be silly, be pissed, be numb, be kissed. You can be whatever the “F” you want to be…….Just don’t stop being you. I love you & your mother, too!
You are one strong woman/Mother.
You are amazing, strong and beautiful!! Stay strong and fight!! We love you and are with you through it all……prayers everyday for you girl!!!
Alyssa,You sure have alot of spunk!!!! I love you my little friend!!! I ache for you.
Alyssa, you are not in this alone, I believe you have hundreds of people standing behind you. You are unbelievably strong, but even the strong have to break sometime. Just remember, God never gives us more than we can handle. You will be here to plan Ava’s wedding, I believe God’s plan for you is to set an example for other women, to never give up and you can kick this !! We are all here for you, if you need anything just call. I would be happy to sit in the tub with you anytime, or just let you punch and scream at me to get it all out. We are continuing the prayers every day. We love you !!! Love Aunt Debi
I couldn’t read this without tears in my eyes. It brought back so many memories. And I remember curling up in the bathtub many times, crying my eyes out. But usually I put water in first. You write so beautifully, and not only are you helping yourself but you are inspiring and educating many others. You are so courageous , and you will do just fine, sweet girl!
This made me cry! Hold strong Alyssa! X
WOW…..YOU are such an inspiration
Thoughts and prayers to you and your family!
Kim Luoma forwarded the link to your blog. You are an amazing woman and it sounds like you have married a prince of a guy. Hang on to that wonderful perspective you have, and fight, fight, fight! I believe that God has more plans for you, and He is with you every step of the way.
Hey alyssa, I just wanted to let you know ben and I have been praying for you and thinking about you a lot. I know you don’t want to need or accept help, but I would love to anyways.
Whether it’s making a meal or just bringing a craft/game and playing with the kids so you don’t have to worry for a little while. This isn’t an idle offer so please, if you think of anything you need, you can email or call anytime. My phone number in case you don’t have it anymore is 502-315-9204.
We love you and your family and are praying for you all.
You will get through this, Alyssa. Cry, laugh, pray sing, get angry whatever it takes to get through each day. You are in my prayers. God Bless You.
Stay strong pretty girl!
Thank you for being so brave to blog this. I wish you the best for you and your husband. You are amazing!