Thursday, May 26, 2011

Long story short

So to make a long story short-6 weeks after Parker was born- I discovered I had a lump in my breast. Told doc many times, but she brushed it off as I had an ultrasound on that breast during pregnancy (thought there was something then too). My doctor told me it was probably a plugged milk duct, so massage it and use a hot pack for 15 min several times a day. Plus I have no family history, no cancer in the family at all, I don't smoke and I exercise regularly- so cancer was NOT on my radar. Well, nothing I tried caused the lump to shrink. The doctor said, if it doesn't get better by the weekend, take these antibiotics. Well it didn't progress to mastitis and the lump didn't go away by that weekend. It continued to get larger and I continued to mention it at all doctor's appointments, even at Parker's well child visits. Finally fed up with a lump the size of A LEMON- I insisted that I have more imaging done. Granted I had a clean ultrasound on that breast only 6 months earlier. For those of you without experience with breast tumors, it was only noticeable by feeling the breast- it was a hard area in the corner. Despite the size of the lump, my breast was still totally normal sized and producing plenty of milk for my little one.

August 29th, I went to University Hospitals and Clinics Breast Clinic and had ultrasound and mammogram. The ultrasound saw NOTHING, they almost sent me home! I suggested that they do more imaging as I really wanted to have some answers that day. Having a mammo while lactating is NOT fun- and it was very uncomfortable. The mammogram saw lots and lots of calcifications all throughout the breast but no obvious tumor or mass where the lump was. Little did I know that calcifications are a red flag for cancer. They took me into a little office, handed me a box of tissues and said, it's not good. They said that it was probably cancer and they would need to move fast to determine the type and extent of disease. I called Patrick and he joined me at the hospital where I spent several more hours getting core biopsies and needle aspirates of the mass and an enlarged lymph node. My world fell apart, I was terrified and had to wait an agonizing 3 days to get the pathology report and decide our plan of action.

The very next week I found myself in an oncologist's office with my father, sister, husband, son and my very sick mother (in a wheelchair nonetheless) waiting to get any shred of good news we could. Turned out it was not responsive to female hormones (ER/PR-), it was of the very aggressive Her-2 subtype, and it was present in the enlarged lymph node. Doctor felt confident that it would not be elsewhere in my body, so we did not do whole body imaging to look for metastatic spread. In sum, I was stage IIIb or IIIc. There is only one stage beyond III, and that is IV.

That same day, I started the first of my 4 rounds of neoaduvant chemotherapy regimen, 5' Fluorouracil, Epirubicin and Cyclophosphamide (FEC), with herceptin. After those 4, 3 week cycles, I would have 10 cycles of Paclitaxol and continue herceptin. Chemo wasn't that bad for me. The first night I was so hyper because of the pre-meds (prednisone) that I couldn't sleep, and it wasn't uncommon in the weeks to follow for me to go jogging the same day as chemo. Never suffered nausea or neuropathies (loss of feeling in extremities), although had my fair share of GI issues.

In Feb, 2010 I had my surgery- which included a left masectomy and complete lymph node dissection followed by immediate reconstruction. The plastic surgeon used a skin sparing technique so that I would have minimal future surgeries. All the while I was still on herceptin. After surgery, the pathology report came back and I had 4/12+ lymph nodes, ie. the cancer was still there, but thankfully they'd removed all lymph nodes they could see. The primary breast tumor however had a complete response and all remaining cancer there was DCIS (a non invasive stage I form of cancer).

Because I had several + lymph nodes I still needed radiation to increase my chances of a recurrence free future. I had radiation to my reconstructed breast, the arm pit as well as the chest wall. It was very uncomfortable- and was much more painful that I expected. Radiation burns feel like a sun burn that goes all the way through your body. I pealed several times and my scar never fully healed up. I had noticed on my last treatment day that my back was really starting to hurt, but chalked it up to stress, picking up Parker and lack of exercise. While all this was going on, my own mother lost her battle with amyloidosis and was laid to rest the day before mother's day in 2010. I was heart broken but knew she'd suffered long enough.

On a follow-up visit with the Rad. Oncologist I mentioned the back pain (it was now so bad that I limped) and she suggested we get a bone scan- just in case. I had tried to massage it out, heat, ice, I even tried jogging (which hurt so bad I almost cried). While in the lab, working on scheduling my PhD defense date, I got a call from the Rad. Oncologist and she said it wasn't good news. There were two spots of metastatic disease in my bones (a vertebra and my pelvis) right over where I had the terrible back pain. Holy Crap, I was still on Herceptin for 3 more months! How could it come back before I'd even finished therapy! I had read such wonderful things about Herceptin, how could it fail me?

PET and CT scans revealed that (thankfully) my lungs, liver and brain were cancer-free. That minor victory gave me hope. Although such imaging can't detect micro-metastases which could be everywhere and anywhere in my body. So I am very cautious. I have started monthly Xgeva (a antibody to RANKL) to strengthen my bones, and hopefully Tuesday next week I will get to start the new chemo cocktail my doctor selected. The pain is worst in the morning and night, but it responds well to advil.

I am taking a medical leave of absence from graduate school, to spend time raising Parker. Unfortunately, we will not be able to expand our family due to my health, so I want to cherish every moment I have with our little man. He is 1 year old now.

I have no idea what I will do career-wise, at this point- I just don't care. The irony is painful. During undergrad. I worked alongside a graduate student studying skin cancer and the initiation, promotion and progression of cancer. Then when I came to Iowa, I always thought I'd end up studying cancer, not be fighting it.

3 comments:

  1. Your courage through all of this has been truly inspiring, and continues to be through these new developments. Taking a leave from grad school was a great decision, you can always go back and you don't need that stress right now. Spending time with Patrick, Parker and friends is what you need the most. Thinking of you often

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  2. Thank you Kristen for sharing your journey. I am so glad that you are able to take time off of school to enjoy your little boy!

    Prayerfully,
    Tara

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  3. Thanks Kristin for sharing all of this! I am proud to know you you and call you family!! You are so strong and the courage of a soldier!! Fighting your war against this cancer!! You can do it and we are always thinking of you! I miss not getting to see you all like we got to when we lived at the hospital when Rick was there, but you are always in our thoughts and prayers!! Just remember you are never alone, you have a great BIG family who love you!!
    Take Care and Love
    Heather, Josh and Caleb

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