The beginning

So here we go. I found out this week that I have cancer. I have no idea what the future will bring and I want to document my experience for myself, my family and so that people can learn from this experience. I am barely into it and I’ve learned some big lessons already. I feel that I will most likely forget a lot of this journey and at least for now, I don’t want to. I want to remember how I felt about things. I want to remember what I went through. And I want my kids to be able to look back at something and know what our family went through when they were children. I hope that we come out the other side stronger than ever.

My name is Jenn. I am 37 years old and have an awesome husband and two kids (5 and 21 months). I am a stay at home mom and a Pampered Chef consultant. I’m a normal person. I don’t know how this happened.

It all started two weeks ago. On July 26, 2012, I went in for a routine OB/GYN visit. The midwife and I were chatting easily and she started doing my breast exam. Right away I could tell she was paying a lot of attention to one spot and our conversation stopped. The spot she was touching was mildly sore. I asked what was up and put my hand there. I immediately felt what I considered to be a pretty big lump. I immediately thought and said “oh shit.” This was not a small lump. And it was hard. Harder than anything I had ever felt in my body. There were distinct edges to it – like a marble but bigger and not regular. I’ve had about every kind of clog, etc. you can have breastfeeding the kids so I was used to feeling lumps. This was not like any of those. I had been nursing the baby (toddler) once or twice a day at this point, so we talked about clogs and that it’s probably nothing. But just in case, she was sending me for an ultrasound to get it checked out. I was shocked that anything could have grown in my body so fast without me noticing. It’s not like anyone could miss this if they were feeling around. And I check my breasts! Not as often as I should obviously but this had totally gotten past me and I was shocked.

The boobie specialists had a cancellation (lucky me!) so they got me in at 8:00 the next morning. I was training for Tri for the Cure (how ironic) and planned an open water swim and bike ride for that morning. My plan was to be in and out of the ultrasound and on to training. I had my bike strapped to the car and everything. My in-and-out turned into over three hours. When I arrived, they said they wanted to do a mammogram first. They put me in a warm robe and sat me in the waiting room. These ladies are very compassionate and know that this is a stressful experience for people. I had never had a mammo so I was a bit nervous after the stories I had heard. It was so easy I was shocked (go get your mammograms!!!). They took two views on each side and I went back to the waiting room. A short time later, the woman came back and said they needed more pictures. I started to get nervous at this point. When I went back in she told me there were two other “areas of concern” that I couldn’t feel but they could see in the pictures so she needed more/clearer views. One “area” was on each side. She took six more pictures. Seemed like a lot. I went back to wait. Two more views and back to the waiting room. Finally, the ultrasound tech called me in. When I got on the table, she felt the lump and said it was pretty mobile which was a good thing. Then she put the machine on me. The first thing she said was that it was “very complex”. I had no idea what that meant – is that good or bad? I know ultrasound techs know what they are looking at – they see more on that screen than anyone else. And I could tell her reaction wasn’t good. I had an ultrasound last year for mastitis that wouldn’t go away and I knew how long an ultrasound took when they weren’t concerned. I knew that she was reassuring in that case. I wasn’t getting that this time. This time the ultrasound was LONG. Many, many pictures were taken. Nothing good was said. When she was done, she started wiping the gel off me and then said she just wanted to get a couple pictures of my lymph nodes for the doctor to review. She didn’t say anything, but she did. I caught her. You don’t check lymph nodes if you aren’t thinking cancer. My little bit of nervousness turned into a little bit of numbness at this point. She said my lymph nodes didn’t look “overly inflamed”. What the heck does that mean? Are they inflamed or not? How scared should I be at this point??? She got me cleaned up and went to talk to the doctor. She told me that she thought he might want to come in to see me which is totally normal (yeah, right) so I may need to wait a bit. She was gone a long time. She came back and said that the doctor wasn’t going to come in today but he did want me to come back for a needle biopsy. She reassured me and seated me back in the waiting room to wait for scheduling. I was freaking out. The scheduler brought me back to a consultation room and talked to me about the process of the biopsy, showed me pictures of the scans and ultrasounds and gave me her first available appointment. Monday, August 6, 2012. 11 days. I asked her if I looked okay because I felt like I was freaking out inside and she said I looked like I was handling things exceptionally well. At least I looked that way, right?

The next day I had a Pampered Chef convention to see all the new products for fall. Something I am usually super excited for. I was pretty much in a fog. I couldn’t stop feeling my lump (I didn’t think it felt “mobile” like they said). I had snapped some pictures on my camera phone of the ultrasound image. The googling I had done was not good. In short, I was freaking out. One of my friends has a sister who was an ultrasound tech – I had forgotten! She sent the images to her sister and she immediately came back with reasons why it was benign. They sounded like good reasons! It was about a thousand pounds off my shoulders. I relaxed. We decided that it was probably a galactocele. This is a blockage where milk hardens in the breast. That would feel different than a clog! I was so relieved. I got back to normal and the week flew by. I didn’t think about my boob. Until Saturday night before the triathlon. For some reason, I started thinking “what if we’re wrong?” I couldn’t sleep that night. I did the tri in a fog, just got through it without thinking. I loved seeing my family there at the end and we went out to brunch afterwards. I wasn’t able to nap that day which turned out to be good as I went to sleep at 8pm and slept all night.

Monday morning, mom picked me up and took me in for the biopsy. We got there early and I distracted myself by watching the Olympics coverage. Will Phelps actually retire I wondered? They called me back and we went to the consultation room. Explained the process again and the doctor came in to meet me and talk for a while. I made sure he knew I was still nursing and we talked about it being a galactocele which he agreed was totally a possibility. Then they took me to a private room to change into my warm robe. I went into the treatment room where they had lovely spa music playing and laid me down with a warm blanket over my body. If not for my boob being out on display, propped up and marked with Sharpie I would have been pretty relaxed. I have to say the facility did a great job. They really did everything they could. But let me tell you – biopsys suck. My lump is at the 10:00 position in my left breast, so it is on the top side towards my neck. He went in on the inside of my boob which is really close to my face – there was no where to look and not see it so I just closed my eyes. They did talk me through the whole process. If talking made things easier it would have been awesome. They held my hand and tried their best to distract me. The doctor injected Lidocaine to numb the area. Even with that, there was a lot of pushing, pressure, tugging, and of course the big gun they use to take the samples right in my face. They injected more Lidocaine, but since my lump was sore itself, that pain was with me the whole time due to the pressure of the ultrasound. They made an incision to insert the biopsy needle through. I watched one sample on the monitor above my head – I could see the needle right at the side of the lump, hear the bang of the trigger being pulled and then the needle was all the way through with the sample inside. It wasn’t very good distraction. They took four samples. When they finished taking the samples, they inserted a titanium “S” into the spot. I don’t know what the S stands for but I don’t think it’s Super. The nurse released my hands and put pressure on the incision. There was a lot of chit chat. I asked to see the samples. I also asked if they could tell anything so far – immediately all three of them said no, so I asked to be clear “I didn’t know if you could tell if it was milk related.” No one said anything for a few seconds and the doctor said that it was not milk related. They showed me the samples, floating in a small container of pink fluid. They looked like worms in there. Longer than I expected (over 2.5 cm). Pink flesh. No chunks of milk in there. That was my last piece of hope. This wasn’t good. They took me in for some mammogram views (3) and applied a pressure bandage over the steri strips. All I could do was try to think happy thoughts and wait for the results the next day. The test takes 20 hours so there is no way I will hear before then. The nurse stressed for me to not do ANYTHING for 24 hours (going to the mailbox was too much) and to do as little as possible for another 24. I thought she was exaggerating until I woke up from my nap. I reached over to get my glasses and almost started crying because of the pain in my chest. One of my friends took my 5 year old and my mom watched the baby while taking care of me. It was a long day. The radiologist was supposed to send the results to my OB who would call me. If I didn’t hear by 3 I could start making calls.

Tuesday, I tried to distract myself. The OB’s office called me at 9:40am. I was shocked they were calling so early – I eagerly answered the phone and it was a nurse! That had to be a good sign, right? She told me that they had received some information from the breast clinic (as I am waiting with baited breath) and that it said they would like me to schedule a biopsy. Are you kidding me? I told her I had the biopsy and was waiting for them to call with the results. Seriously – you people are killing me here. Even though they told me to relax, I took mom and the kids to the museum of nature and science. Lots for the kids to do and I could mostly sit on benches. It worked great. Except my brain was going crazy. I wouldn’t put my phone down for fear I would miss their call. I watched it like a hawk. All. Day. Long. At 3:00 I called the office – I asked if the midwife was working that day and told the girl who answered the phone that I was waiting on biopsy results. She responded with an “Oooooooo….. hold on”. Seriously. I’m pretty sure I just got my answer. I sat on hold and then was transferred without a word. One of the doctors picked up the phone. Her voice sounded very serious and soothing – she asked me right away how I was doing. I told her I have been on pins and needles all day waiting for a phone call but I guessed I knew the result from the way they were acting. She told me they did have the results and that they weren’t good. It is cancer and I need to see the surgeon right away. I asked her for more information and she told me it was a grade 3 tumor and possibly invasive. What the heck does that mean? She talked about how shocked they were and that she had spoken to the midwife earlier and she couldn’t believe it. I was just pretty much pissed at this point that it seemed everyone had been talking about it but no one picked up the phone to call me. The doctor didn’t have the referral number ready for the surgeon and commented a couple times that she wasn’t expecting my call and was going to call me later. SERIOUSLY?!?!?! I called the breast center and spoke to my lovely nurse. She was much more compassionate. She read from the report that it is Invasive Ductal Carcinoma (IDC) and a grade 3 tumor. I would have to google that later. I started making phone calls. The surgeon can see me next Wednesday. I have to wait 8 more days. I contacted my GP, he started doing everything he could for me. I’m glad to feel like I have someone in my corner. I made phone calls to family. My dad is on a fishing trip and unreachable until he flies out on Saturday but everyone else knows. I decided right away that I didn’t like telling people so I posted it to Facebook. Save myself a lot of conversations. I had to immediately stop nursing the baby to get ready for surgery.

That night I started googling. Turns out grade 3 is the overachiever. Not exactly what you want in a tumor. I wasn’t surprised though, I knew it had to be fast moving for me to not have noticed it. I am fortunate to have a friend who is a survivor so I have a great person to talk to. I have to say that even though my friend’s sister was wrong about the galactocele, that was the greatest gift I could have gotten. She gave me back my life during that long wait for the biopsy and I love her for it.

The midwife called me on Thursday. She was shocked at how things had been handled and made me feel a little better about their office, but they really did not handle telling me well. Very disappointed in them. She also read me the full report which included a line no one had read before “with probable lymph node invasion”. I assumed that based on the grade, but I don’t understand why people don’t just give you all the information. My friend used a great phrase to describe it – if you’re going to hit me in the face with a sledge hammer, can you just do it once?

Now I wait. I have found people have all different kinds of reactions – I know they are based on their own experiences and for a large part have nothing to do with me. Some of them I understand and some I don’t. Here is my feeling. You may not agree but I am the one with the cancer so my thought is everyone needs to suck it up and act like they do around me. Saying I have cancer is not the same thing as saying I’m dying. I am here to fight. And I can’t fight if I’m being a wuss. I’ve never seen someone curled up in a ball win a battle. And I am fighting myself, so it’s not like I can fake it. I am fighting for myself, for my kids, for my husband and for my family. Would I be weak if one of my kids had to fight this battle? Hell no. I would rather it be me than watch someone I love go through this. I know I can take it. I know I am strong. I know when my son was battling his illness and having surgeries, I wished a thousand times that it could be me instead of him. So here’s my opportunity. I know that there will be days I need to cry and that’s fine, but this isn’t one of them.

I have no idea what the next year will bring. It feels like I am watching a movie about my life, like it isn’t real.

If I have a say in it, my plan is for a radical mastectomy with reconstruction. I will get new boobs and a tummy tuck as part of the surgery – because if you’re going to survive cancer the least they can do is make you look fabulous. I am assuming this will be the recommendation with how fast the tumor is moving along with the two additional areas of concern. I am way more afraid of it returning so I really want to wipe any chance of that away.

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9 Responses to The beginning

  1. Jennifer Joseph says:

    Jenn-
    I’m sure your thoughts are racing right now. I am so sorry you are having to go through this but I have no doubt that you will use your strength to fight this & fight it hard! I am walking in the Chicago breast cancer walk this September 22 with my school. I will walk in honor of you. 🙂 Stay strong & I will stay posted through this blog.

  2. Michelle Buan says:

    Jenn,
    Wow, I’m sitting here with chills, sadness and anger (for the damn OB’s office.) You are an amazing person and I am so sorry this is happening to you and your family. That “amazingness” (thats a word right?) is what is going to get you through this. Love you girl!

  3. Jessica says:

    My friend you fucking ROCK!!!

  4. Stephanie Harris says:

    You are an amazing woman. I am proud of how you are ready to fight and my prayers and all of my support are with you.

  5. Paige Cunningham says:

    Kick it’s ass Jenn!!

  6. Christina Cullinane says:

    Great description of your experience – you should require your docs (and office staff) to read it – they may deal with this every day, but you don’t and they need to remember that. Each individual’s experience is their experience and the impact of gestures, words, no words, is immense. If you’ve met one person with cancer, you’ve met one person with cancer. No two experiences are the same… I really love the sledgehammer analogy and I plan to use that elsewhere. Thank you, Jenn, for sharing. Love, hugs and good vibes to you. Please, if you have a local Breast Cancer Navigator there, use them. Komen or American Cancer Society would know. They are usually an oncology certified nurse that supports those with a breast cancer diagnosis, they are grant supported through these large organizations – like Komen and no cost to you, they are an advocate for you and know what resources are available to you and can answer many of the questions you may have or know who to ask to get the answer, just realize there are some things that can’t be answered like – what caused my cancer?… we have no great clear cut answers for why you, yet… which really sucks, because that is what you really want to know, but if we did know that, you could have made a decision about that, but cancer is not a decision, it is a disease process. Keep up the positive outlook and in touch with your support network – you’ve got a great attitude and that is most of what matters. Always write your questions down as you think of them, prioritize what you want to discuss before you go to the doc’s office and always bring someone with you that can take notes so you can remember what was discussed later. Get copies of your biopsy report and other relevant testing to keep for your own folder for your reference. I know I’m rambling, I’m sorry, hope this makes sense – just haven’t slept in a week myself! Love to you!

  7. Jen, I just discovered your blog and can’t put it down. You write so well… and your journal serves as a priceless gift of support for all those who are battling breast cancer. My prayers are with you on your journey. My grandmother was a survivor of breast cancer, skin cancer, and colon cancer. I proudly donate to the Komen 3 day walk every year. Keep the faith.

  8. Laura says:

    Jenn – I’m curious to know more about how you “broke the news” on Facebook. I’m wanting to put together a blog post about “ways to tell people you’ve got cancer” – and I’d love to include your bit if you don’t mind. Also, I’d like to ask your permission to link to your blog via mine. Let me know~

  9. David Kuczer says:

    Great blog! What you do is very couragous and a great information source for every-one who Is newly diagnosed. I wish you all the best.

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