How it started for me

On the morning of Tuesday, December 18, my friend and I went out for our regular morning run and talked about end of year doctor appointments. Some of the talk was about routine things that needed to get done, some of the talk was also about doing all the needed appointments now prior to the new year to avoid paying the deductible.

In that conversation, my friend mentioned how she hated the mammogram -- she also feared it. I told her that I can go with her and get mine done at the same time. The next thing we knew was that two days later, on December 20, we became 'mammomates' (I'm coining this term) in a nice imaging center that looked like a spa. Beautiful decor, pretty white robes, wonderful clinicians who talked to us as though we were going in for a massage.

Two days later, she got her results and these were negative. Victory! I didn't get mine -- which for my doctor's office meant good news. A call is bad news and no news is good news. But then a week later, my son needed an ultrasound of his kidneys at the same location. Routine work for us. I mentioned at this appointment that I had a mammogram done the previous week which I'm sure was ok but I didn't get my results and wanted copies for my records. So they gave me a copy. I read that had a mass on my right breast that warranted a second mammogram. This was Saturday, December 29th. I just had to wait until Monday, December 31st when the doctor's office opened so that I could schedule this. Monday came and the soonest appointment available was Wednesday, January 2 at 9am. I took this reluctantly (I really wanted something that day to get it over with -- thinking it was going to be fine -- and I wanted to avoid the deductible of the new year). In hindsight, this was a blessing. I was able to celebrate the New Year with my family in peace.

On Wednesday, January 2, I went to my repeat mammogram at 9am while my husband got ready for work at home and watched our son at the same time. The technician at the mammogram appointment was the most informative one I've ever had. She showed me areas of concern, educated me, told me she is not the one who writes the reports -- it's the radiologist who does. She told me he currently has about 200 reports to write and results take about 2-3 days -- but in my case, she wanted the radiologist to come out of his office and see this. She was so polite "With your permission, may I bring the radiologist in here to review this now. I can't promise he can do this, but I'd like to try if it's ok with you." The first thing I said was "Please do so -- if something needs attention... I have a 7 year old son..."

The radiologist came in and explained microcalcifications -- how normal these are in many women, how they may even be normal in me. These may have been on previous mammograms and mine are very difficult to decipher -- on the bad side, these could have been mistaken as normal when really something else is going on. So, he wanted me back in at 1pm for an ultrasound. At that ultrasound he said his suspicions were confirmed and the gold standard is the biopsy. A biopsy -- removal of tissue -- can be done by the surgeon with general anesthesia. Or, this can be done by the radiologist locally with ultrasound guidance of the needle. I would be awake for this  -- and since they could do this quicker than the alternative, I went with this one. The earliest appointment was for Monday, January 7, 2013 at 2pm.

On Monday, at 2pm I went in for my biopsy. In my head I was thinking long 'thin' needle as in an amniocentesis which was required for my second child since she was showing a cyst of concern. I was half right. The needle was not thin. My heart started to race. I told them as long as they keep talking to me I'll be fine. We talked Legos. I had images of my son with his Legos. We talked about Legoland and how I'd love to see the new hotel they are completing. It was good. It kept my head out of what sounded like a meat grinder/drill which extracted from several areas. Since I couldn't feel anything, I just made sure my head was filled with positive things. Being a clinician, I also pretended that my body was not my own. I was a patient without the 'I' part. After excision of tissue they inserted a titanium item called a biomarker which tells future doctors or imaging technicians the area of biopsy. In case of cancer, it can also guide the surgeon. At the end, I was told the bruising is normal, I'll be sore once medication wears off, I can exercise in about 2-3 days, and I'll hear of results in 2-3 days.

I went about my week as usual, then on Thursday at about 2pm -- while reading the final chapters of Little House in the Woods with my son, I got 'the call'.

My doctor started with "I'm afraid I don't have good news. " I started to cry.

"You have an aggressive and invasive cancer." Then I bawled, sobbed, in Spanish the best word I can think of would be llantos --  a painful cry deep within the soul of body. I can't really describe it. But this kind of crying has only happened twice in my life. The first when I got 'the call' that my dad died. The second was when I was at the hospital at time of delivery and seeing my daughter's heartbeat stop.

I kept crying while the doctor said 'It's ok to cry. You need to cry. I have time. Take your time...." and at the same time somehow my 7 year old son became an adult, rubbing my arm, saying "Mommy, it's ok. You're going to be ok. When that happens to me I take deep breaths." I started to cry even harder because I was looking at my son. I feared for my son. I started to imagine him without his mommy. I could not handle this.

Once I was able to talk, through crying I asked the doctor hysterically "Just tell me what I need to do! What do I do? Who do I call? What order do I call in...." I cried next with warrior tears. Got all the info down on paper -- shaking the whole time -- then called my husband and repeated the entire sequence from 'llantos' to details. As I was crying he packed up his things at work. I didn't need to tell him what the results were. Somehow he knew and by the time I was able to get to the talking part he was out of his office, building, streets, and well onto the freeway.

We divided the calls -- surgeon, oncologist, PETSCAN. Each call was an eternity throughout being asked many questions, being placed on hold, being transferred. Standard initial questions from everyone:

Name
Date of Birth
Insurance
Subscriber of insurance info (all my hubby info)
Address
Phone
diagnosis
referral

I was able to get a PETSCAN the next morning first thing. This was Friday, January 11, 2013. Results were to be given that day but they fell through the cracks. On the top layer of paperwork the doctors marked it as STAT -- or emergency, first thing, with priority to be read by that day. It got reported to the wrong doctor then wrongly labeled. By the time they closed it was too late to learn more. I had to wait until Monday morning. This was beyond brutal. It was the first time in this experience with cancer where I became so angry. Waiting two more days -- when I had been told it would be read that day -- was like finishing the hardest race of your life, reaching the finish line, then being told to do it one more time. I was drained. I also had a killer migraine from the radiation of the PETSCAN. Could also be a combination of going caffeine free from the day before. Regardless, for Friday and Saturday I had an intense migraine that was blinding. Sunday was my first normal full day where I just wanted to enjoy my family and do the things that make me happy -- play with my son, talk to my husband, read out loud together as a family, talk about characters in a book and dive into those stories away from reality. It was a great day.

Then on Monday, January 14, I got the call -- but this time, given the circumstance, it was a celebratory one. I don't have terminal cancer that spread to areas I feared, like the pancreas, the brain, the lungs. It's contained in my breast. It's possible lymphs nodes are affected but I won't worry about this now.  And another area highlighted on the PETSCAN -- my throat at the level of the vocal folds. Ironically, this is an area I know very well since I'm a speech language pathologist. I'm praying that the area was just lit up from intense crying from the day before the imaging. I heard this was possible, and for now, I'm hoping this is the case. That determination, or appointment to rule out my vocal folds, will have to be made with an ENT.

So all week -- from Monday, January, 14 to Friday January 18 -- we were in and out of doctors' offices (first, second and third opinion oncology surgeons, geneticist, oncologists, imaging specialists). This was my new world. My surgeons appointment, for example, was three hours long -- very thorough, informative, and I loved the surgeon I saw first this week. This is where I learned of a truer stage (my family doctor said probably stage 1-2). According to surgeons, I'm stage 2a or 2b. Lots of things go into this which warrants a different post. Lots of things also go into treatment options. In general they are saying the same thing for me with one major difference -- mastectomy plus wait and see if I need chemo, radiation, hormones OR chemo (3 months, one month off, then one month) plus mastectomy plus wait and see if I need more chemo, radiation, hormones. I'm feeling most comfortable with first option. This next week is about getting an MRI, a biopsy of lymph nodes and throat, and one last round of second opinions. Surgery needs to happen in February.

This has been my new year so far. And the only place I blog is from the doctor's offices -- it's my way of keeping my head busy, while also keeping a trail of this cancer so that I know and remember how to move forward. Despite this HUGE challenge placed in front of me, I'm feeling hopeful and grateful for all prayers and/or thoughts, positive vibes sent my way.


Note:
Regarding the PETSCAN: For this I was asked to fast in addition to eating a diet rich in protein, vegetables, fruits -- but no grains or dairy. This was interesting but a backburner thought since I had gone 'paleo' on January 1. What was described was a paleo diet and I wondered why. I later learn that grains and dairy cause inflammation and they don't want to see this on the imaging. Though I wasn't ready to learn more at this time, it was an onion layer of information that surely had some impact on future diet info.