Craziest 5 weeks of my life

I’m sorry I haven’t updated sooner. Things got pretty wild very quickly after my last post. I had a stereotactic biopsy on both breasts. The following Tuesday we got the results back, I had widespread, high grade ductal carcinoma in situ all over my right breast. The microcalcifications on the left side were benign.

I had my first appointment with my oncologist the next day. She reviewed her findings and said that because I had an aggressive form of DCIS and because of my age (37), she recommended a mastectomy of the right breast. It was up to me if I wanted to keep my left breast, but she said my risk of recurrence on the other side was about 1/2 to 1% per year of life…meaning if I lived for 40 more years I had up to a 40% chance of recurrence on the left side. That made my decision pretty clear. I had to take them both off.

None of this was a surprise to me, after reading what I had online, but hearing it out loud was difficult. I was then referred to a plastic surgeon to decide on what sort of reconstruction I wanted. I had that appointment on my 38th birthday. Happy birthday to me. We decided on DIEP Flap reconstruction, which takes my belly fat and uses it to rebuild the breast, making a very natural looking and feeling breast and also giving a tummy tuck at the same time. It is a complicated surgery and my plastic surgeon also said that if my blood vessels didn’t match up then he would have to change to a different type of Flap surgery, called pedicled TRAM flap. With that one he would use my ab muscles to rebuild my breasts.

From there things moved very quickly. My plastic surgeon was taking a vacation at the end of June so I had to choose between having my surgery within the next 2 weeks or waiting until he got back. Given that waiting has never been my strong suit and it seemed easier to make arrangements for the kids in the summer, we went with the earlier option and my surgery was scheduled for June 15. A little over a month from mammogram to bilateral mastectomy.

And so here we are….3 weeks and 1 day since my surgery. He did end up having to do the pedicled TRAM flap surgery. The recovery is long, but my husband, my mom, my family and my friends have been BEYOND amazing. My children were sent on lots of adventures with other people so I could rest and heal.

I went through a period right before my surgery of deep, DEEP anger about having to lose my breasts. But when my oncologist called me 4 days after my surgery and told me that they confirmed the DCIS was non-invasive, that my lymph nodes were clear and it hadn’t spread, that I didn’t need chemo, radiation or any further treatment at all….that I was CANCER FREE……that all dissipated. One battle to win my war. Truly an amazing gift.

Tonight I am sitting on my electric recliner. It has been my home since I got back from the hospital. I sleep here now, laying back fully is still uncomfortable. Today was the first day I spent all day with all of my boys. We went to my parents house and I rested there while my boys played, brought me water, showered me with kisses and love. I felt so damn lucky. I know why I took off my breasts. I did it for them, for my husband, for my family and friends and, yes, for me. So that I get to have many, MANY more of these days, weeks and years ahead.

I feel like I have connected with my husband and my boys in new ways that I cannot even describe. My husband has been the most amazing caretaker, my boys have shown such tenderness and empathy. I have learned so much about them, I’m learning new things about myself. I still have a psychological journey to take. Physically I’m healing but the mental piece of this is muddy and cloudy for me right now. But I’m aware and working on it bit by bit. The biggest thing is I am HERE. I am getting stronger every single day. I will put up some more detailed posts on my journey in a special section here, but I have seen some of you guys checking back here to see what happened so I wanted to give you the update. It’s not the update I wanted to give, but I’m through the worst and have only positive things to look forward to.

Thank you for your support.
Amy

Advertisements

95% Chance of Malignancy

You ladies know me and I’m not one to sit on my laurels and wait for answers. So as you would suspect, I spent hours scouring the internet staring at pictures of others’ mammograms and comparing them to my own, trying to figure out the likelihood of this actually being cancer. Trying to see what sort of microcalifications I had, what it all meant.

Finally, a friend suggested I ask for the actual radiology report. She had given me my images, but not her report. BI-RADS is a rating scale radiologists use to evaluate images.

 

So there it was, in black and white….BIRADS code 5….greater than or equal to 95% chance of malignancy.

It’s strange, because rather than flipping out, seeing it written down actually brought some sense of calm. I think you guys more than anyone would understand why. An ANSWER. Knowing SOMETHING is better than not knowing at all, right? Even if its not the news you wanted. At least I had something to hold on to, at least I could start to mentally prepare. 95% = cancer to me. Perhaps I’ll be pleasantly surprised, but it’s easier to assume I’ll fall in the 95% because then I can start to move forward.

Of course….I still had to confirm this with the biopsy. That was on Friday. More to come on that.

The day your world stops….again

elliott6Hello to anyone who still checks into this blog. It has been quite awhile since I have updated. Today I had a birthday party for my sweet Elliott, my second rainbow baby, the baby I fought so hard for and chronicled extensively here. He is six. SIX! How is that even possible?  My last rainbow baby, Andrew is a 3 year old bundle of constant energy and love, and my first rainbow baby, Ethan is a smart, sweet almost 9 year old…. always with a book in his hand.

I wish I was here just to say hi and update. But I’m here because my world has stopped…again. I have been unexpectedly launched back into this world of crazy that I know so well.

I found a lump in my breast. After a couple of weeks I went to the doctor. She felt it and said she wasn’t concerned but she “didn’t mess around with these things” so she sent me for a diagnostic mammogram. Then the lump got smaller. I have been exercising a lot since October and lost about 20 lbs at Orange Theory. I honestly thought that perhaps I had just developed a pec muscle! But I didn’t have it on the other side. I almost cancelled the mammogram, but since I’m turning 40 next year, I decided to go ahead with it. I’m not sure I’m “glad” that I did, but it is a good thing that I did.

I went in expecting NOTHING. I have no breast cancer in my family, no cancer in my family AT ALL. But they did the first images. And she checked with the radiologist, who asked for more…and more…of both sides. They kept asking if I had breast cancer in my family, if I had nipple discharge. No!!!! I don’t, I haven’t! I got a sick feeling in my stomach.

Finally I went back to meet with the radiologist…and then my world stopped. Just like it did every time I found out I was losing another baby. Two abnormal mammograms. Suspicious microcalcifications over both breasts. “Ductal Carcinoma In Situ” (DCIS) she says. I sat there stunned. My husband wasn’t there. I was just doing it “just in case.” They ushered me out the back entrance because I was quite literally about to bawl my eyes out. I ran to the car and lost it. WORLD STOPPED.

MAYBE BREAST CANCER. FUCKING CANCER. WHEN I AM LITERALLY IN THE BEST SHAPE OF MY LIFE. WHAT THE FUCK?

Sorry not sorry for the F bombs.

And so now I wait…oh the waiting. I swear I have PTSD from waiting. Waiting for betas, waiting for ultrasounds, and now waiting for my biopsy on 5/19 to find out if its malignant or benign. Waiting. Fucking waiting.

And then the research, the combing the internet to try to figure it all out…comparing my mammogram to images online. Trying to classify MY microcalcifications to what I see online, what are the ACTUAL CHANCES this will be cancer. The websites. The obsession. IT HAS ALL COME BACK WITH A VENGEANCE. And so now I am here. Again. Waiting. Obsessing.

There are some positive things here so I’ll tell you about them. DCIS is the earliest and most treatable form of breast cancer. It’s considered stage 0. It has a 98.7% survival rate. Treatment is NOT chemo, but either mastectomy or radiation. I’ll be honest, chemo scares the heck out of me. I would much rather chop those suckers off and get some new perky ones paid for my insurance. My breasts have done their job, I breastfed my 3 boys and I don’t need them anymore. I never loved them that much anyway. Mommy makeover? Yes please. (By no means am I making light of a mastectomy. I know it is a very tough choice and tough road….but I’m trying to be positive here.)

My biopsy is on Friday. Thankfully I have a busy week ahead. I earned a trip to Chicago for joining the President’s Club with my business. That is Tues-Thurs. So I will be busy. But today it is quiet. And my brain is running a million miles in circles. And so I wait. I have never forgotten all of you and still read your comments and I have to say I feel some pride in knowing that I helped some of you..whether it was peace of mind, encouragement, opening a discussion with your doctor that ultimately had a good result…or even if it didn’t, if it gave you some strength to FIGHT then that gives me pride.

So I’m trying to find that confidence and strength in me now. I’ll be honest I’m so damn scared it’s hard. I think once I have an answer…good or bad…then at least I can move forward with confidence. That was the most frustrating part about the recurrent chemical pregnancies was there WAS no solid solution.

But today I wait…so for you those of you who are waiting for something today…waiting to try, 2ww, waiting to test, waiting for betas, waiting for ultrasounds, waiting for baby. Know I am with you…as we wait. Together. And if you happen to have some “good news” thoughts to send my way, I’ll take them. I’ll send them right back to you.

Hugs ladies. Thanks for listening.

 

Hello and an apology!

3sons

Hello my dear readers, I’m not sure how long it’s been since I have posted. My life is a delicious craziness…my 3 rainbow babies, who aren’t babies anymore, are now 8, 5 and 2.5. I spend my days picking up, dropping off, taking to activities, working my self-owned business, kissing them, wiping noses, wiping tears, helping with homework, and somewhere in there I try to find an iota of time for myself and my husband. It’s nearly constant chaos, but when I feel overwhelmed with my day to day I like to come back here, to this place, to where it all started. Sometimes I re-read my own posts, but usually I read your comments. I don’t have time to reply to all of them anymore and I’m sorry for that, but I am reading them, even if its a month or 6 months later. I love that some of you come back to share your successes and I love that you help each other…perhaps you can jump in where I left off.

The most recurrent question that I see is how did I solve this horrible sadness? I detail my full protocol here. Take it to your doctor, ask if they are willing to give it a try. The best thing was that it was easy, non-invasive and inexpensive. Of course I can’t guarantee that it will work for you, but it worked for me both times I tried it, so 100% success rate for me! Better odds than I had without it, that’s for sure.

I’m glad I am still bringing you hope, information, maybe a few answers. This blog is a safe place for me too, a place to come back and visit when sometimes I need a reminder why I run at 100mph all day long. But I wouldn’t trade it for the world. My boys are amazing human beings and I love them to the core of my bones. The journey you are on is worth it. Stay the course. You are stronger than you know. Big hugs to each of you!

A

jamesamy

 

 

Saying hi!

It’s been so long since I have posted. What really can I say? My last miracle turned 2 this month….TWO! He’s not really a baby anymore but he’s still my baby and I love him to pieces. He doesn’t slow down long enough for me to get a non-blurry picture of him. He’s obsessed with fans, air conditioners and balls, mostly basketballs, but any will do in a pinch.

993868_10156443300075083_101883358106430566_n

My second miracle is 4.5 going on 15. He LOVES his little brother (almost too much) but plays so well with his big brother (when he lets him.) He is introspective, smart, and diligent. Give that boy a puzzle and he puts it together like lightning. I know we are supposed to think our kids are the smartest ever, but this one really is!! 😉 20160108_092410

And then my first miracle, who I didn’t even realize how miraculous he was at the time….he is missing his two front teeth. He voraciously reads Harry Potter. He is NOT a little kid, he is small in stature but makes up for it in personality. He is my lovebug. He snuggles with me every chance he gets. He is learning French and has an impeccable accent. He is every bit the “momma’s boy” I was promised when I found out our first child was a boy.

20160123_092842

I lost 5….but these three are MINE. They were worth the pain, the waiting, the shots, the failures, the tears, the heartbreak, the invasive procedues…all of it. They are worth it.

My husband had a vasectomy on our 11 year anniversary. Our family is complete. We found our solution. Our pain is long past. Yours will be too. Keep fighting, keep researching…DO NOT GIVE UP. Your sweet family awaits you on way or another!

20160121_152452

 

Awareness day….

11222946_10153592370462332_1851504666909063695_n

As a younger woman you are told “be careful, don’t get pregnant!” So you try to be responsible and take birth control for so many years until you meet THE ONE. Then you get married, and you decide to wait a little while before starting your family and then it’s time….and it takes a little time and then you are pregnant! Your entire world rocks and shift…excitement, a tiny bit of fear, dreams for the future develop in days or weeks, and then you find out that no….it’s gone, justlikethat. All of it. Just…gone.

So you buck up and try again…and this one brings the most perfect baby boy ever into your arms!!! And you love him with every part of your being and then you want to have another, a sibling…and you get pregnant, and lose the baby, and get pregnant again, and lose that one too. And just when you think you can’t handle anything more, you get pregnant again and lose that one too. You break….you are broken into 10 million little pieces. But your 2 year old keeps you together, you keep that tiny iota of hope. You find the right doctor with the right solution after months and months of searching…and you find another perfect baby in your arms. A miracle, a true miracle.

And then you think, I have more love, I want one more, how hard could it be? And you get pregnant again so fast, and it lasts longer than the others but still it’s gone. You blame yourself for hoping you can be like all the rest….but you go back to your miracle worker doctor and 9 months later your 2nd miracle is in your arms. My 3 boys that I love more than I ever could have thought possible would NOT EXIST if I hadn’t lost 5 of their siblings. It’s this bizarre parallel universe where the worst thing ever results in the best thing ever.

I barely kept my sanity through all of this, but the little I kept was beause of my Strong Mommas….an unlikely group of women, across the country who all lost babies around the time I lost my baby before Ethan. 8 years later we are still going strong. So as we celebrate 8 years of friendship we also remember why we are together. And I share my story to let those of you who may be going through the same horrible rollercoaster that there WILL be a happy ending. Don’t give up, don’t stop fighting for what you want most. If your doctor isn’t helping you then find another! If you are here I know you are going through this and so my heart is with you.

My miracle is 1!

IMG_4927 IMG_4687 (1)

I know some of you are just finding my blog and I know many of you just check in every once in awhile. I don’t have much to report, my life is crazy, my boys are wonderful and energetic. Three kids is a bit of a three ring circus but I wouldn’t have it any other way. My sweet Andrew turned 1 in January. It was, easily, the fastest year of my life. His little personality is starting to develop and its amazing to watch him turn into a little person. I’m enjoying getting to know this new little man in my life. My 3.5 year old, Elliott is amazing with him. I can’t wait until he gets to be a bit older and all three of them are thick as thieves. My 6.5 year old is smart, funny, and sweet. My heart is full.

Speaking of Elliott – here’s my other miracle that was chronicled so extensively on this blog…

20150125_112507

What a funny guy he has become…almost 4 now and quite the imp. They say he looks more like me and I don’t mind it at all.

20150126_185041

It still blows my mind sometimes that there were five lost to get these three sweet faces calling my name every day…..that had any of those worked out I wouldn’t have these amazing little men in my life.  But that was my journey and this is my family at the end of that journey. I’ve been having a bit of a hard time saying goodbye to the baby stage. I’m clinging hard to my last baby but he’s rapidly headed towards toddlerhood and I can’t do a thing to stop it other than snuggle him when he will slow down long enough to let me. But I also am excited about the next phase, three children, three boys in all their glory.

My family is complete and I’m grateful to be at this point, and grateful to all of you who read through and helped me in my darkest times. If you are here now then things probably seem pretty bleak…but there is an ending, a happy ending, and a beginning too. Hang in there. Don’t give up hope. You will get there, I promise.

A