Backing Up...

Posting about my 'disease' was one of the most difficult things I've ever done and I wanted to keep it short and simple - long story short. However, I realize in the making of a short story some vital information was left out that could possibly be of benefit to another down the road so bear with me as I back up and create the longer version of 'my story'.

The past couple of years have been what I would term stellar years. I felt the healthiest ever, biking nearly 50 miles a week, swimming, walking, hiking.  In addition I was traveling a lot, enjoying the kids and being Nana, falling in love with Uganda, teaching the Bible, embracing a new calling to the ministry of "grief" and finding a special niche in bereavement volunteer work for a local hospice. All was more than swell. While vacationing in San Juan I thought I had gotten a sinus infection so made an appointment to see my GP upon my return. Was put on an antibiotic for ten days. Nothing was better so I marched back to the doc now with a dry cough and complaining of shortness of breath. (I had noticed while pushing the kiddos in a double stroller -70 lbs -to the park I was winded).  Chalked the shortness of breath up to being out of shape as the long winter and travel had precluded my normal activities for several months. Then one night I had a weird sensation in my left arm - which came and went several times and now I was experiencing spikey headaches that were debilitating first thing in the morning and in the afternoon after any activity.  Back to the doc - starting to feel like a hypochondriac.

This time a brain MRI was ordered for the headaches and all the other symptoms - raw throat, dry cough, hoarseness and arm pain (radiating from my left scapula) were chalked up to GERD (acid reflux).  Weird as. I had never experienced heartburn but I was told there was such a thing as silent reflux. So was put on meds for that. Several weeks later nothing was better and as a matter of fact I felt worse so I went back yet again only to be told I needed to be patient and let the GERD meds work.  Fine.  (Yeah right, me patient). We were now at about six weeks from initial onset of symptoms.

Sunday afternoon, April 27, Tim and I were returning from a visit to Fort Collins. I was sleeping and as we reached the 11,600 ft Vail pass I suddenly woke up with chest pains and shortness of breath. As we dropped in elevation the pain lessened but I had a nagging that would not go away. Something was not right. So after returning home and getting some things done around the house I decided I needed to go to ER fearing heart problems.

Multiple tests later I was told my heart was healthy BUT there was a spot on my lung. Needless to say we were shocked. Then my GP came in to admit me for further tests saying she was sorry about the lung cancer. Whoa! Hold on there doc!  Did you say "lung cancer"?  The spot had now evolved into cancer. I asked, "so, they know it is cancer?" To which she replied, looking stricken, "I thought you knew". Nope.

I was admitted to await a lung biopsy in the morning. Now let's go long story short. What should have been ab overnight stay turned into 3 1/2 days stay because in doing the lung biopsy my lung was nicked and I developed a pneumothorax which required a chest tube which required 3 days to heal.
That stay was pretty much a blur as I was in shock about the cancer but soon discovered it was not lung cancer but a breast metastasis presenting itself in my lungs (yup both) and chest between the lungs. Because it was a metastasis of a primary cancer I was stage IV.  Enter more shock and disbelief.

May 1st I was released from the hospital (10 X-rays, 2 CT scans, echo cardio gram, EKG, multiple blood draws etc etc later) and put on Femara, an estrogen blocker to try to shrink the tumors as they are inoperable. This will be the first line of treatment.

I saw oncologists here in GJ and then sought a second opinion in Ft Collins and have decided to seek treatment with the doc in FC. She is well schooled, specializing in breast metastasis and of all the docs has given me more hope by telling me that I need to look at this situation as merely a chronic illness much like diabetes that can and will be managed. She said her job is to keep me alive till a cure can be found. I love her outlook! She helps me in the "holding on"!


June 19 I will be seeing a specialist at the Dana Farber Cancer Institute in Boston, leaving no stone unturned.

So, how can my story possibly be used to benefit another?  One doc reminded me that being a breast cancer survivor does not mean I should put it out of my mind. Of course that is just what I thought being nearly 16 years out from original diagnosis.  I should not let it rule my life yet I must always have in the forefront of my mind the possibility of recurrence. A chronic cough, shortness of breath and hoarseness are good indicators of metastasis to the lung. Bone and joint pain could mean metastasis to the bone. Headaches could indicate brain metastasis. (My MRI was clear and my PET scan showed no bone or liver metastasis. Thank You Jesus!)  Learn what else to look for.

Be aware. Be diligent. Be pushy. Be your own advocate. Doctors are not God after all. They are just like you and me. We each have our own areas of expertise. Their's just happens to be medicine. But you know your body.  Don't be afraid of having the outside of your medical file marked PITA (pain in the ass). I know my file is marked in bright red letters.  And I'm proud of it!

PITA - the one "Holding On"!