Difficult Decisions

I know it's been awhile again since I posted on this blog, but so many things have been uncertain that I didn't want to post anything if it might not be happening for certain.

On July 18, I had a MRI scan to the brain and everything looked stable, even some small reduction in tumor size and number.  So good news there.  It looks like I will be continuing with the Tarceva and the Tagresso, taking one of each on alternate days. I had to go back to Rush for an Avastin infusion the following Monday, July 25.  This procedure is only of half-hour of actual infusing of the Avastin, but managed to keep us at the hospital from 11:30 to 3:00 with rush hour on both the drive there and back.

Dr. Bonomi, Dr. Marwaha (radiology oncologist) and I have been going round and round in discussions about radiating my legs.  Dr. B thinks it is my best and only chance of ever walking again.   Dr. M is willing to do this radiation if I want it, but doesn't seem that enthused.  The chances of actually having success in being able to walk again are unclear, but seem rather low. The side effects are potentially unpleasant (e.g. diarrhea) and the area Dr. B is thinking about radiating is rather large. Finally, the radiation would be daily for two business weeks.

If you can't tell, I am leaning against going through with it.  I really want to walk again, but I just don't feel comfortable with this procedure. This is really a tough decision.  I feel like I may not be able to withstand any more health issues or injuries, but don't know which way to go to avoid them.

The other news for this period is that we purchased something called a Liftkar that automatically carries me up and down stair steps.  Here is a link to a demonstration:  http://chicago.101mobility.com/mobility-lifter-liftkar.php .  The version we purchased proved to be less than was advertised.  When the rep demonstrated how to use the chair at our house, he made it look so easy to connect the wheelchair to the stair lift and go up and down the stairs.  In fact, the four caregivers who attended the demonstration and training - Doug, Abby, mother-in-law Pat and father-in-law Ed put in a lot of time practicing just with the chair (no one sitting in it) and still feel a bit unsure about maneuvering it.  It is also a tight squeeze to try and get it around the corner on the stairs leading to the garage.  We were also having trouble with getting the wheelchair over the threshhold of  the front door (but were able to obtain a ramp to solve that problem).  The sales rep came back to the house yesterday and he agreed to my proposal to exchange the version of the stair lift we have for a different version that has a built-in chair instead of attaching to a wheelchair. This eliminates the complexity of attaching the wheelchair to the Liftkar and slims down the size of the machine to make it easier to maneuver and manage that corner of the stairs.

My mother-in-law, who is my caregiver on Mondays and Tuesdays has not been comfortable using the Liftkar and we had a little mishap on Tuesday that really scared her, although nobody was in danger of getting hurt.  We'd had a rough day all around and it became apparent to both of us that she wasn't going to be able to continue being my caregiver much longer.  We are both okay with this and there are no hard feelings.

So now we are looking for a new caregiver for at least 2 days a week.  If anyone out there has references for strong, reliable, proficient and emotionally supportive caregivers, please send their contact information to me.

That's all for now!

Independence Day?

No sooner do I send a blog update earlier this week than I find myself at the ER again on Thursday. This time for a very red, very swollen and painful left thumb.

They did an X-ray, gave me some high-powered antibiotics and said we should keep an eye on it. That night back at home, I was in a lot of pain with the entire left hand swollen like a "hulk smash" fist.  I knew I had to go back to the hospital and would probably have to stay for a while.  After a CT and an ultrasound on the hand, they determined it was cellulitis and put me on IV antibiotics twice a day.    I didn't get released from the hospital until this afternoon  because, although the treatment is working and there has been a huge improvement, there is still some swelling.  I had many different doctors and the one charged with releasing me didn't want me to leave the hospital until the swelling was completely gone. There are no oral antibiotics I can take with my penicillin allergy that equate to the IV antibiotic I am getting twice a day at the hospital.  However, each time we spoke to this doctor, he said the infectious disease doctor could approve a home visiting nurse to administer the IV antibiotic twice a day or he could identify an oral antibiotic that I could take, even though it wouldn't work as well as the IV.   It took until today for the ID doctor to get to us and stay with us long enough to approve an oral antibiotic for me to take that he felt wouldn't interfere with my allergy.   (He is a bit skeptical about penicillin allergies and thinks they can go away after a long time.  He is thinking about doing a study about this.)

The 4th of July holiday probably prolonged our hospital stay with a lighter staff.  However, my hospital room had a window that directly overlooked a beautiful fireworks display, which made it kind of special. 

  

It has been a good time to stay in bed and rest my lifeless legs.  They feel a little stronger and I can feel the ground under my feet but they still aren't moving or balancing well.  We are soon to be at a point where we will have to make a major decision about health care workers and devices that will increase my ability to handle the stairs. I worked with some Physical Therapy people today who introduced me to a "walker platform attachment" for resting my weakened left arm in a little tray on the top left of the walker. It instantly helped me walk with the walker again, although the legs still are very weak.   Mom and Dad Pawlowski have done some research for us on a few different models of automatic stair chairs that only require one person to pull up and down stairs without being attached to the stair.  And  I'm sure there are other options to explore.

We had someone demo one version of a stair chair with me in our house and it seemed to work well. Another one is set to demo their product tomorrow.  We will continue our research on all the options we have and then make our best possible decision..

Never dull!