Marathon Days

Dear Friends and Family,

A lot has happened since I last blogged with you.  I am still home from the hospital after my stay for
shortness of breath and the problems we found in my lungs.  However, I have quite a fight ahead of me.  It has not been easy physically, mentally or in any other way.  I started out well, living within the guidelines of my new diet, mostly diabetic due to the steroid I am on.  Then, about 4 days later, everything hit the wall.  I started to have no appetite, began to grow weak, and was not sleeping at night at all.  We realized later that I should have already been tapering off of the steroids, but had not been given any orders from the hospital, so was on a higher dose for about a week longer that I should have been.  We visited the cardiologist, who assured us things did not look worse, but had not really improved.  We also found out that one of the meds I had in the hospital would not be available to me unless I had a catheter put in to measure the pressure of the backup in my lungs.  (Since then, it did get approved for 90 days, so will not need that catheter yet.  This med should help open the blood vessels so they can help spread the oxygen a little better.)

On Thursday, we traveled to UCSF, which in retrospect, we realized we should not have gone, as it totally wore me out, and then I managed to press the wrong button when I got out of the car, and we were locked out with all of our stuff in it, and it was still running. No Onstar, so Matt hauled me in for my blood test, then upstairs to the appointment.  I had not eaten yet, and all of the insulin and stuff we needed to check my blood sugar was locked in the car.  God is good, in that there was a locksmith right across the street from the hospital, and he was available.  Then, we had not brought enough cash, so Matt couldn't park in the lot, so he had to find a handicapped spot three blocks away.  Back up to me; check the blood sugar and get a shot; choke down a sandwich; be ready to meet with everyone there.  By the time the fellow and the good doctor walked in the door, we were ready to leave.  We were exhausted, and could have handled the appointment over the phone.  Really, no new news other that what I had gone through in the hospital.  Well, one big piece of news is that they have pulled me off all chemo.  They cannot discount that it is contributing to the problems, so I am done for the short term.  They also wanted us to know that the cancer, and what it happening in my lungs are connected.  I had thought of them as two things, and once the one was taken care of, we could move onto the other.  Not so.  They are connected, and the one in my lungs just may be one that I may not beat.  While we continue to fight, the fight could be too much.

On Friday, we were in Dr. Duncan's office as I just couldn't take it anymore.  The steroids they put me on don't allow me to sleep, and actually give me huge bouts of anxiety.  I was having problems eating, then swallowing.  So, at first, they put me on Ambien, so I could sleep, then realized that Ambien and the steroid work against each other, so I didn't sleep at all.  So they put me on Soroquel, which really seemed to help me sleep, until I realized I was having a horrible time swallowing, literally chewing my food to a pulp, and still not able to choke it down.  So they took me off the Soroquel, which is known to cause this, and put me on Ativan, another anti-anxiety drug.  Hopefully this one will help me be calm through the night so Matt and I can sleep.  He is up with me helping me with the bathroom, and any other little thing I need in the night.  But that means he doesn't sleep much either.

Since the appointment with Dr. Duncan, I now have a hospital bed, a wheelchair, and a commode, which I do use.  I'm doing my best to eat and get my strength back, but it had been the hardest thing I have done yet.  It is literally hour to hour, most days.

We have been blessed by all of the meals that have been prepared and dropped off, as well as the fact that many of you are waiting in the wings for your turn.  Matt's mom and dad have been at the house almost everyday, as well as my RN sister-in-law, who have all helped in many humbling ways.  My brother and his children have been here, I talk to my aunt in Texas regularly, and my brother from Portland flew down to spend a few days with us.  But best of all was when my parents walked in the door after being gone 38 days.

We have prepared our family for the fact that anything could happen at this point.  Have we given up?  NO!  We know that our mighty God can choose to heal at any moment.  We also know that healing might take place in Heaven.

I ask that you continue to pray for my family, for Matt and endurance, wisdom, and rest for him, and that we will get the meds figured out and I will be able to tolerate them.  This includes eating, working through the anxiety that sets in at any moment, and the enormous amount of strength it takes just to go to the bathroom, or the marathon it feels like I've run just to take a shower.  I have a long ways to go, but am trying to stand firmly on the promises in the Word,

Join me there,
Danene
January 24,2010