Wednesday, May 18, 2011

May 18

Saw Dr E today. No CT this visit. Everything looks fine. No new side effects.

Started eye drops in right eye today. I expect it will be at least a few days before I see any change.

Monday, May 16, 2011


Turns out the retinal hemorrhages are late effects from the full head brain radiation 2 years ago. Dr Phan said this is common. Lots of funky pictures of the retina + with a dye. Apparently, these normally clear up on their own. But she will watch them frequently. She will call me after she studies the pictures closely. In any case, we're headed to NC to see the kids.

Talked to Dr Phan while in NC. She is sending eye drops to help the right eye.

Thursday, May 5, 2011

Right eye issue

For a couple weeks have had distorted vision in my right eye. Eye doc told me today that I have a small hemorrhage on the retina. See a retina specialist next week.

Wednesday, May 4, 2011

4 year survivor

Hurray!! It has now been 4 years since my first chemo treatment for lung cancer on May 4, 2007. I remember that we were nervous and apprehensive when I was diagnosed on April 26, 2007. But, we faced it and battled as we always have. I've had obvious ups and downs. Some pretty significant side effects from 7 different kinds of chemo and high levels of radiation on my brain.

Loss of energy, significant fatigue. I've been pitiful at times. Complete loss of appetite - it really sucked to have no appetite. Food had no taste. At one time, I lost 75 lbs in about a year. I was already balding; but, with chemo and radiation, I lost what little hair I still had. It is now just a little bit of baby fuzz. Several multi-day hospital stays - including one when they did a procedure to remove fluid build-up in my lungs - they removed a total of 1 1/2 gallons. Experienced a pulmonary embolism (blood clot in the lung) in the middle of all this. Radiation caused cataracts and needed surgery in both eyes. Tethered to oxygen for months. Giving myself shots to thin my blood.

Per the American Cancer Society, 75% of those diagnosed with Stage IV Lung Cancer die within 2 years. But, I am still here! I have had a couple periods of remission - one 18 months and one 9 months. Despite the challenges of the past 4 years, I look forward to being around for quite a bit more time.

We have continued find ways to cruise to many parts of the world. We have been to so many places in the last 4 years - Denmark, Iceland, Norway, Greenland, the Caribbean, Alaska, Hawaii, Spain, Italy, Greece, Turkey, Galapogas, Ecuador, Columbia, Costa Rica, Panama, Belize, Morocco, Monaco, France, Portugal, Croatia, Butchart Gardens in British Columbia - Canada, and so many other places. Sometimes I had to drag around a heavy oxygen machine; but, we managed anyway.

Currently, I am on a study/test drug that has been a miracle. In about 6 months, my lung tumor mass has reduced almost 70% and I have not experienced any significant negative side effects from the crizotinib.

As I reflect on the past 4 years, I have been a very lucky person.