(This post is unedited. I just typed it and have not had a chance to check it for spelling or grammar)
The first six weeks of the trial are up. Jane had an MRI two weeks ago and last week had a PET scan while she was in S.F. The results were good.
Due to the clinical trial being in San Francisco, Jane has to flight to S.F. every other week. Her sister and I have been taking turns escorting her. Most of our flights are on Hawaiian. I have had to fly into San Jose and out of S.F. because it is a cheaper flight. Flying into San Jose is good. My good friend, old boss and pastor of the church I use to attend in the Bay Area (Stuart), picks us up and has allow us to crash at their house. We fly on Thursday getting in to San Jose about 10:00 PM. We get to bed by 11:00 and then we are up at 6:00. We get to the hospital by 9:00 and spend most of the day there. Stuart has been gracious enough to hang out with me while Jane is getting infused. It has been nice to catch up and hang out. Stuart is a connoisseur of coffee, he is the one that taught me to appreciate true rich bold coffee. He also taught me to be a life long learner. So, together we sit in a coffee house (Martha and Bros Coffee) not far from the hospital, sipping on a cup of Joe, reading and sharing. The last time we were there we sat in Martha’s and read for a couple of hours. We were both pretty tired, so we moved to a comfortable looking red leather couch, taking our places on opposite ends. I was trying to read but I kept nodding off. I looked over at Stuart, who had already succumbed to staring at the inside of his eyelids. Seeing this shameless example of peace, I closed my eyes and took a power nap. All this to say, I/we really appreciate Stuart and Jendy for taking care of us on these quick turn around trips. At the end of a long day, Stuart and I go back over the hospital, pick up Jane and then get dropped off at the hotel. Saturday morning we are up, by 5:00 AM, we headed down to the lobby by 6:15 to catch the shuttle to the airport. We arrive back in Honolulu about 1:00 PM. We go home unpack and try to get to bed early.
I am doing this once a month, Jane does this quick turn around trip twice a month. The perils of flying this often are the physical toll that it takes on Jane’s body, the time it takes away from the family, sick people on the same plane and the farting guy.
I am sorry to have to share this with you but with the amount of flying that Jane has been doing we are going to have a few good stories. This is one that I should just pass on, but……I wouldn’t me be if I didn’t share.
On the last flight that I was on with Jane we were sitting in about the middle of the plane. We were seated in the two seats by the window. Behind me sat the couple from …HELL…Jane drop her blanket and ask me look for it. I got up and the lady sitting behind us had picked it up and was clutching it like a lost child, not sure if it was Jane’s blanket for sure, but I’m pretty sure it was, I sat down kind of disgusted. Throughout the flight they kick the back of my seat more times then the 6 year old twins I had sitting behind me on another flight a few years ago. Not only did they kick my seat, they used my headrest as a handicap rail to get in and out of their seats, jerking and pulling with excessive force. Then when I thought it could get no worse…. there was the farting guy. I do not know who this farting guy was but instead of using the restroom he allow his peristalsis to force nauseous gas to seep out into the recycled air of the plane. This did not happen once, or twice, this went on for the majority of the flight. It was one of the worst I have ever been on.
Sorry for the digression. I know that you are really interested in the results from the scans. The good news is there are no new spots! Yeah God! The not so good news is that three of the spots (tumors) seem to have gotten a little larger. Dr. Melisko said that this could be caused by swelling since Jane is off the steroid. Our desire is that her body would start to produce her own natural steroid to keep the swelling down. The size of growth is under twenty percent. Twenty percent would constitute disease progression and eliminate Jane from the trial.
For now Jane will continue on the trial. This will require Jane to continue to go to San Francisco ever other week. Her next scans will be sometime at the end of February.
As a result of the swelling Jane still seems to suffer dizziness. To treat the swelling, Jane was prescribed steroids. The side effects of the steroids on Jane are sleeplessness, swelling of the body and loss of muscle. Now that she is off of steroids she is sleeping better and some of the swelling/weight gain had gone down. The muscle loss is a different story, Jane still has problem getting out of bed or standing up after squatting. The chemo has cause Jane to lose most of her hair, causes her to be nauseous and fatigued most of the time. She lives her life in spurts. When she has energy she goes and when she is tired she shuts down. The toll: Loss of hair, swelling/weight gain, muscle loss (weakness), fatigue, memory loss, nausea, muscle cramps and dizziness (I may have missed one or two).
As I write this Jane is sick. She has a slight fever. Due to the chemo her white blood cell count is low and it is very hard for her body to fight off sickness or infection. Please pray that her body takes care of the sickness. Tomorrow, Jane’s sister will call the doctor and try to get Jane in to see her. She may need a shot to boost her immune system.
Please pray for all the things listed in the toll. The toll is taking it’s toll on Jane and the rest of us. Pray that the chemo/trial works and that the tumors decrease and no new ones appear. Jane is getting weary and this is very hard for her.
Jane has been very tire and has been unable to check her email or facebook.