Because of the microcalcifications, I needed mammograms every 6 months for 2 years to watch for changes in size and quantity. Those were June 2011, December 2011 and again in June 2012. My appointment was already scheduled for this December.
In each of those 3 mammograms nothing changed and all was good. I was told, "See you in six months." So I put it all out of my mind and went on my merry way.
Well my life is a series of craziness. No one could ever say my life is anything close to boring! I broke my arm in March of 2008 when I tried snowboarding for the first time. On the bunny slope. And ski patrol came and got me. That ended up needing surgery to have plates and screws put in my wrist.
I had a prior issue for a bulging disc (C5/C6- in my neck) and several rounds of cortisone injections followed. 2011, while training for the Boston Marathon, my hip went out. Three weeks before the marathon, I couldn't walk without a limp! It was my Sacroiliac Joint (SI) Joint on my right side. Weeks with a chiropractor helped that.
Then came 2012. New Years Day started off with great friends for a 5K road race in Lowell. So much fun. A few weeks later "the girls" and I were in a 1/2 marathon relay. We were The Real Runner's of the South Shore.
That day my SI Joint started to act up again in a MAJOR way. I found a great chiropractor who really made a huge difference for me. Now I need to keep up with that for maintenance.
Also in 2012, I became a certified fitness instructor and started teaching bootcamp classes. LOVE teaching and I get so much out of seeing the progress made by those in my classes. I love seeing how hard they work and the incredible results! Sometimes I wonder if I get more excited than they do. :)
This year there were 2 rounds of the Couch to 5K training sessions. Not sure exactly how many graduates we had. Storms canceled the 2nd graduation race and the first was record heat.
My personal fitness, I started taking the best kickboxing class EVER. I LOVE KICKBOXING. It completely makes sense that they are through iLoveKickboxing.com. Physically and mentally, this class is one of the best things I can continue to do for myself.
Since I love the class so much, it was easy to talk it up to everyone I know. When they announced a contest for the student who had the most referrals to their online $19.99 special for gloves and three classes, it was EASY for me to have so many sign up. Not only did I win the first prize of $500 at my local Randolph (BEST EVER!) location, but I won the NATIONAL prize too! That was $2500! I could NOT believe it! SUPER excited!!
The contest was during the month of April. I took Thursday, May 17th off of work for 2 different doctor appointments and my plan was to stop at the gym to pick up the check, then I could pay off my car loan early. I didn't love that car, but I was really looking forward to not having a car payment for a while. My plan was to push it a year or 2 before getting something else, so I could save up some money and pay down some other bills.
Well, that didn't happen. Literally the day BEFORE I was planning to pay off my car, I got into a car accident. Two cars ahead of me stopped short 100 yards past a light as we were all accelerating in the rain. The SUV in front of me stopped. When I was sliding with NO traction on my brakes, I slammed on my horn to tell her, I'm hitting you!
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Well, that was obviously a total loss!! So much for no car payment! I took the prize money, along with some insurance money to have a bigger down payment on my new car and not have to roll in any taxes or fees. And now I have a car payment again.
That week in general SUCKED. Mother's Day was that Sunday. The day itself was nice, having dinner with my parents and stopping over at my boyfriend's parents house too. But that night? My boyfriend was SO sick.
We had a huge fight the next morning. I was screaming at him to let me take him to the hospital and he wouldn't go. Guys will whine and complain about aches and pains, but this was different. I had never seen him like this and I was really worried. He said he would work from home, but ended up at the hospital later. After weeks of testing, it was an ulcer with a hiatal hernia.
That Tuesday was our one year anniversary. He was MISERABLE. It was when I left his house on Wednesday morning that I had my car accident on my way home. In addition to my car being totalled, my back was a mess! I started back with my chiropractor a few times a week to help it. Talk about a bad week!
Then the summer hit. On top of my normal ups and downs.... my wrist with the old break started acting up. This happened in June, July and again in August! It was this weird thing where my whole hand and wrist was inflamed, the muscles and tendons completely froze up, I had a huge egg where the plate was and it was SO much pain.
This was in July when I was on my way to the doctor right after it happened. The first 2 times it happened I was at work. The third? I was with my boyfriend at the movies!
The orthopedic my primary care office sent me to was not very helpful. I didn't like him at all. After the 3rd time in August, I called my original orthopedic in Boston at Beth Israel, Dr Appleton. He was AMAZING. I got an appointment with him for the following week. He suggested surgery to have the hardware removed, but thought carpal tunnel could be an issue. He wanted to speak with a colleague about her also being in the surgery for the carpal release.
When I went to try to schedule surgery, Dr. Appleton had spoken with Dr. Rozenthal and she was familiar with what was going on with me! FINALLY! My tendons were reacting to the hardware and becoming inflamed. If the plates and screws were not removed, they could rupture.
My surgery was on September 27th. That morning in pre-op, they told me it would be about 45 minutes. Well, if I'm going to do something, I'm all in! There was much more fluid in my tendons than they had expected. Cleaning everything up took longer and the surgery was an hour and a half instead.
I hadn't expected all the swelling after surgery. I couldn't move my fingers! When I went back to work the following week, I needed someone to come into my office to write out my voice mail messages. I couldn't hold a pen and I couldn't type that fast with my left hand. Right now I'm still with an occupational therapist to get full strength and range of motion back in my right hand.
While I was still recovering from that and still had the brace on after the surgery, it was hard to get comfortable at night. The brace completely restricted my wrist from any movement. Plus, it was bulky and uncomfortable. I have no idea how I lasted 2 weeks with that thing on me.
Over Columbus Day weekend, while trying to get comfortable in bed, I was twisted around, right arm flopped and my left arm draped across my chest. It was an accident. I know that as a woman, I should do monthly self breast exams, but really? Who is on top of those?
By accident, my left hand happened to rest across my right breast. And that's when I felt it. A lump. And it felt big and hard and not right. My boyfriend was next to me in bed. I grabbed his hand and he asked, "What the hell is that?" I told him it was a lump.
He asked what happened. It's weird that I knew all the exact steps that I would take over the next 4 weeks. Since it was Columbus Day weekend, I knew my ob's office would be closed on Monday. I told him, "I'll call my doctor's office on Tuesday and she'll have me to come in for an exam. Then she'll send me for a mammogram and ultrasound. They will have me do a biopsy and then I'll be sent to a specialist."
I didn't know all of the emotional stress that process would be when I said it so matter-of-factly.
I didn't know all of the emotional stress that process would be when I said it so matter-of-factly.
My appointment to have my wrist looked at was already scheduled for Friday, October 12th. My ob's office got in me in at 1pm before I had to head into Boston. I see Kristin, the Nurse Practitioner. She is AMAZING. I couldn't be luckier than to have someone like her in my health corner.
Another odd foreshadowing was when I told Kristin, "I love how all of my doctors are all so proactive. But I hate they are always right. It isn't ruling anything out when I'm sent for more tests. It is always confirming that they are right.". She told me not to worry and not to get ahead of anything but to stop at the office next door as I was leaving to schedule my mammogram and ultrasound. That appointment was the following Friday, October 19th.
That weekend, we had Sunday dinner at my boyfriend's parents house. His family is great. They have always been so nice to me and made me feel welcome. After dinner, we were back at his house. While trying to figure out money things (upcoming vacation, Christmas coming, plus other bills), he blurted out, "you could move in." Um, WHAT?
He told me he had been thinking about it and loved me and wanted me to move in. He would clean out part of the unfinished apartment he has on the first floor of his house for my cats to move into. He was going to build me a closet for my stuff. He had it all figured out.
We were thinking about it... I was staying there that week, getting ready from there in the morning for work and the cats would move in downstairs the following weekend to make sure it worked before seeing if I'd officially give notice on my apartment when I paid my November rent.
Originally I told work that I would be taking a long lunch for a doctor appointment on the 19th. I planned on coming back to work but if it was bad news, I wouldn't be back. The mammogram was first and was just like the 3 I had in the past year and a half.
I HATED waiting the half hour until the ultrasound. Anyone who knows me knows that I have NO patience at all. I hate waiting.
When the tech took me in and started, she was pushing and probing, clicking and saving ultrasound images as she went. Then she started measuring spots on the images she was saving. It was a long ultrasound. And I knew.
The tech left the room to have the radiologist look at the images and said she'd be right back. That's when I sent the first of three back to back text messages to my boyfriend, as tears started rolling down my face.
"She is showing the dr. now. Starting to freak out now. LONG time for the ultrasound with a ton of freeze shots & she said nothing the whole time.
"I just have a really bad feeling & trying not to cry right now while I wait."
"Biopsy next fri at 8:30am. I will call in a few."
That week sucked. Sucked. I started doing some research. I tried putting it out of my mind, but it was all I could think about. I called my ob office and asked for something to take the day of the biopsy. I don't do well with medical procedures. She gave me a prescription for Xanax and instead of the 2 I was expecting for that day, she gave me 30. To help me relax during the week, waiting for Friday morning. She said, "to shut your brain off, so you can get some sleep." And that's what I needed. My mind would NOT shut off.
Everyone that I talked to kept telling me not to worry, that I would be okay. SO many women need to have a breast biopsy done and its fine. It is just really really common, so don't worry.
But I knew. And I knew I had reason to worry. I cried in my boyfriends arms. I didn't want this. I didn't want to lose my hair. I was so scared.
He took Friday morning off to take me to the biopsy and to then bring me home. It wasn't long. But I had tears streaming down my face before they were done. The radiologist gave me his card and said to call his personal cell phone number over the weekend if I had any questions at all.
Monday, October 29th. Hurricane Sandy hit. My boss had sent a text message on Sunday night that our office would be closed. I had already checked a few emails and done what I could, but was having trouble opening everything I needed to see on my laptop at home.
I don't think I have ever been that grateful for a horrible weather event as I was for Sandy. I was home on Monday.
The call came in at 1:09pm from Kristin at the ob office. I have their number saved on my phone as "Dr OB Gyn". I saw it come up on the caller ID and as I grabbed my phone & ran to the back of the house where my boyfriend was working from home. He walked towards the doorway just in time to see my face as Kristin said, "We got the results from the biopsy. It tested positive for cancer."
I froze. My face, heart and stomach all dropped. I couldn't believe it. Even though I knew on day one when I first felt it, I wasn't expecting her to confirm it. OH MY GOD!
I had tears streaming down my face as she continued to talk. My boyfriend put his arms around me as I sat on the bed in the back bedroom on the phone, silently sobbing on the phone. I asked what stage it was, she couldn't tell me without further testing done.
I had tears streaming down my face as she continued to talk. My boyfriend put his arms around me as I sat on the bed in the back bedroom on the phone, silently sobbing on the phone. I asked what stage it was, she couldn't tell me without further testing done.
Kristin said they were calling the Breast Care Center to get me an appointment. It was at the new Dana Farber/Brigham and Womans Cancer Center at South Shore Hospital. A nurse from Kristin's office would be calling me within an hour to let me know what was going on. They were closing early for the storm, but would give me information before they closed.
I hung up the phone and began to sob. SOB. My boyfriend put his arms around me and told me he loved me. He said, lets go in the other room. I started to walk, and just collapsed on the floor in the hallway, hysterical. I couldn't understand, couldn't comprehend this. OH MY GOD NO!
He tried to help me up and he put his arms around me. I pushed him away and ran through the house to our bedroom, threw myself on the bed and just sobbed and sobbed. Jim came into the bedroom, laid down next to me and wrapped his arms around me. He kept telling me he loved me and it would be okay.
I told him he could take it back. When he asked me to move in, this wasn't on the plate. I couldn't walk away from dealing with this, but he could. Why would he want to deal with this?? He could take it back. I hadn't given notice on my apartment and I didn't have to. I would understand if he didn't want this. It was a lot. A LOT.
The one thing that I will remember more than anything else is when he told me, "Why would I walk away from my best friend?" He said that he loved me, he was in this and it 100%. He would do whatever he could for me. I would just have to deal with it because he wasn't going anywhere.
He just held me in his arms as I cried and cried and said how scared I was. And he kept telling me that he loved me.
I sent a text out to a few friends who knew I was going through this and was waiting for the results. I said, "Dr. called. I was right. It was bad news. They are trying to get me an apt at the breast care center this week. Can't say what stage until lymph nodes biopsies done. Please dont call. I can't talk. I can't even say it out loud. Just really really scare right now."
Their responses were perfect. I have great friends. The planned, organized, on top of it all one responded "Ok. 1 step at a time. You are in shock & need time. We are all here for you when you are ready. You WILL get through this."
The dry, sarcastic, punch it out, no nonsense one said, "Take care and let me know if need anything. Kickboxing tomorrow night?
The one who with me we have been called "the party girls" responded with "Oh julie I'm so sorry plz let me know if you just want to vent and scream... I'm here for you!! Are you with Jim? If not do u want to come over? Hurricane party!!"
And the super sweet, under 30 one sent over, "Oh my gosh Julie! I am so sorry. I know there is nothing I can say to make you feel better. But please know that I am here for you. I'm right next door to the cancer center- so I could meet you for support. I was obviously hoping for better news but life is ridiculous. I heart you girl- call/text me if you want to talk, anytime.
Their responses all fit their wonderful and incredible personalities so well. I love them all so much and lucky and grateful to have them in my life.
At 1:45 I got the next call, Dr Ob Gyn. It was the nurse saying she was getting me the appointment at the breast cancer center. They would be calling within the next could of hours to let me know when my appointment was scheduled for. She asked how I was, told me how sorry she was and said how great the breast cancer center was, that they would take great care of me.
The breast care center called at 2:45 with my appointment info. Thursday, November 1st at 10:30am.
Later on Monday, I had to call my parents. I put my cell on speaker so Jim could jump in when I couldn't talk. Mom answered and I told her to have Dad pick up the other line. I still couldn't say much. All I could do was tell them the order of the appointments. Felt the lump, called the dr who sent me for the mammogram & ultrasound. They set up the biopsy which was that past Friday and my doctor just called with the results. Not good and positive.
Mom asked what that meant. I still couldn't say it. I couldn't hear it. THE C WORD.
That afternoon, during Hurricane Sandy, the rain wasn't bad.... it was just the wind around here. My boyfriend suggested we take the dog for a walk, just to get out. I always walk him across the street in the VERY old cemetery (stones from the 1800's). It was mild day, lots of wind, beautiful fall colors out and about.
Jim never left my side on Monday... well, other than to run to the store for some more groceries for a late lunch early dinner. His mom called while I was chopping up the veggies. He knew I couldn't handle hearing THE C WORD and had a hard time telling his mom without really saying anything.
He told her I heard some bad news and then went through the rest of it.
All day long, like a broken record, all I could hear playing over and over and over again in my mind was "I HAVE CANCER. I HAVE CANCER. I HAVE CANCER." It sucked. But I couldn't say it out loud. I just couldn't. I couldn't get those words out of my mouth.
It was around 9pm while were laying on the sofa. I forced myself to say it. Jim had his arms around me, holding me. My head was buried in his shoulder. I made myself say it.
I have cancer.
Jim held me. He said, "I'm sorry baby. I love you."
That's everything leading up to one of the worst days of my entire life.
I know I have great support in my life. Jim is AMAZING. He says and does everything that I need before I even know I need it. I couldn't do any of this without him. And my friends are incredible too. I'm blessed to have the support system that I do. I know that as things continue, I am going to need them more and more and more.
This week was a struggle. Tuesday I went to work. I told a few people there who knew about the biopsy. Not sure how productive I was in the office, as I was still processing it and trying not to cry. I took up my friend on the suggestion for kickboxing. It was good to punch the hell out of the bag, even though I was a bit limited with my wrist. (No inverts or hooks with my right arm, no pushups, plank or burpies either. I wasn't complaining about no burpies!)
Kristin's nurse called me on Tuesday to see how I was doing and check in with me. Kristin wasn't in that day but was thinking about me. I managed to get more work during the day on Wednesday, but left the office for my appointment with the occupational therapist for my wrist. I told her that day too..... that I have Breast Cancer. It was getting easier to say it out loud at that point without crying. By then, my circle of contacts continued to grow. I told a few other friends, some family and more people at work too.
Kristin called me at work on Wednesday to see how I was. She got the remaining results of the pathology report from the radiologist.
Specifically, on the report:
Invasive carcinoma with both ductal and lobular features, poorly differentiated (grade 3/3) {grade is different than stage}. One focus is suspicious for lymphatic/vascular invasion.
Invasive carcinoma with both ductal and lobular features, poorly differentiated (grade 3/3) {grade is different than stage}. One focus is suspicious for lymphatic/vascular invasion.
Estrogen receptor: diffusely (95%) strongly positive
Progesterone Receptor: diffusely (95%) strongly positive
HER-2: negative
1.7 cm herogenous irregular/lobulated solid mass
Because this is hormone positive, I needed to be off the pill as soon as possible. This cancer basically feeds off of hormones. Being on the pill, I'm giving it food. BUT, I can't get pregnant during treatment. Had a few options and best was a non-hormonal IUD. Great.
She was setting me up for 2pm on Thursday, after I meet the breast oncologist in the morning. I told her I had taken the day off of work, knowing I couldn't handle working after that appointment. The only plan was for a pedi to hopefully take my mind off of things.
I asked about my fertility. I have been more on the side of not having kids than wanting to have them (I'd have to COMPLETELY change my life if I ever had children) but I wasn't sure I wanted that choice completely taken away from me either. She was going to talk to an office they work with about it and would talk to me at my Thursday appointment.
She called me about an hour later. Kristin canceled my appointment with her and told me I had one at 4pm with a fertility preservation specialist. She asked if my boyfriend could go too. He was going with me to the am one at the breast cancer center but if he could with his work, I was sure he'd be there for me. Kristin said to wait and see what they both say about the IUD before she does it and she would fit me in whenever.
Thursday came... LONG story there (and I'm getting tired of typing at this point!). PAGES of note taking, 6 business cards, over 3 hours of appointments and all on 3 1/2 hours of sleep. I was TOAST.
The breast oncologist who spent over an hour with us, answering every crazy question I had for her... and I had PAGES. She was incredible.
Best part of that day... I asked, "What is my prognosis?" Her very quick answer was "Great." and I wrote that down right next to the question in my notebook .
Best part of that day... I asked, "What is my prognosis?" Her very quick answer was "Great." and I wrote that down right next to the question in my notebook .
Lots of information between her and the fertility appointment. More phone calls for referrals need to be done and I have 3 appointments already scheduled for next week... might have a forth with the nutritionist at the breast cancer center too.
Monday am is the MRI, which will see more than the ultrasound picked up. Wednesday is blood work at 9:30, Medical Oncologist at 10 and the Genetic Counselor at 11. (the nutritionist might be after that, since I'm already there... they were great about having the appointments piggy-back.)
Right now, I don't know what the treatment options will be. I'm either Stage I or Stage II, but that depends if it spread to the lymph nodes.
All those mammograms I have had in the past year and a half, including the one 2 weeks ago? Didn't show the lump! My breast tissue is too dense to show it. They only saw it on the ultrasound. I was told to be prepared that more will show up on the MRI and I will most likely get a call because of that. The MRI will see anything that has blood going to it, could be a benign cyst, another tumor or whatever... they don't know.
The breast oncologist said that for a tumor to grow to the size of mine, the average amount of time is 5 years. I HAVE HAD THIS FOR 5 YEARS!
The MRI may also give an indication if the cancer is spreading to my lymph nodes. From the original pathology report, "One focus is suspicious for lymphatic/vascular invasion." That means it could be spreading, maybe. They took 5 samples from the biopsy. One of 5 showed that. I'll know more later.
And the genetic counselor will be testing me for the BRCA gene, to see if I have a higher risk or breast or ovarian cancer. Women who test positive for BRCA have a 60% greater chance of developing breast cancer. Many choose double mastectomies and complete hysterectomy are preventative measures.
IF I test negative for BRCA and IF there are not indications that it is spreading to my lymph nodes, then I would have an option for a lumpectomy. First I would need 2-4 months of chemo to shrink the tumor, which couldn't start until mid or late December. I could have the lump removed March or April-ish, then do radiation, 5 days a week for 5-6 weeks.
But, if I test positive for BRCA and if it looks like it may be spreading to my lymph nodes, or if I just want to decide this option, I could have a mastectomy with immediate reconstruction. From my research online, the women's heath and cancer act requires symmetry for reconstruction, so if I choose this route and choose an, um, upgrade... I'd need to match.
I've been going back and forth with my options, but I want to know more. Is it spreading? If not, and I go with a mastectomy, then I might not require chemo. I'll have to me on a hormone blocker for 5 years since this is hormone positive. Between that and the mastectomy, if it isn't spreading, chemo may not be necessary after surgery.
That means I won't lose my hair.
If a lumpectomy is an option and I choose that, I need to have chemo to shrink it first. And I will lose my hair. But I will keep my real breast... I will keep ME.
If both options are available, I don't know what I want to do. I just don't know.
And at the same time, in about a month, I'll be starting fertility drugs too. For about 2 weeks, they will have me on those, checking my blood every few days (at least that can be done at 8am!). So, I'd most likely start that early December, then mid December, after 2 weeks on the drugs, they would harvest my eggs. If I want to have an option of having kids in the future... gonna need to freeze something now.
I'll be on the hormone blocker for 5 years. I'm 38. When I'm done, I'm 43? And if I have radiation or chemo, and if I'm not pushed into early menopause from all of everything? Would I have any eggs left then? So I don't have a choice. Either I freeze something now and I can have a choice later, or I freeze nothing and there is no option for a choice in the future. Going with the freezing option.
Holy Crap I have been writing for a LONG time. So much for a nothing first entry on this blog. Too much information. Been a LONG crazy week. I didn't even mention the mess with the IUD on Friday (Kristin gave me a prescription for Vicodin for the insane and completely NOT normal response I had to having it put in, AFTER I was brought in a wheelchair next door to the imaging center for an ultrasound to see if it perforated my uterus, which is did not).
And another thing! Kristin... she is amazing. I spent 15-20 minutes with her just talking yesterday. i reminded her that 3 weeks earlier I was in the same exam room, telling her that when I have more tests, it is always confirming, not ruling out. She remembered.
She said she had been going over her notes and my records to see if she missed anything. She didn't feel anything on my exam in May, nothing was on any of my mammograms. I didn't miss an annual. I didn't miss a mammogram. All of the guidelines were followed and both her and I did everything right.
But it happened anyway.
MY PLAN, is to use this blog to vent as well as to update family and friends on what's going on, if anyone wants to know.
I am 38 years old and 5 days ago I was told I have Breast Cancer.
I'm in for another crazy ride in my life. I will beat this. I will get through this. I have the best support system that is possible anywhere. I have amazing people in my life. I am being treated through Dana Farber/Brigham and Womens Cancer Center! Best of the best with everything.
And as one of my best friends told me... I am now a Breast Cancer Survivor.
Thanks for reading.
J
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