Day one almost done

The first treatment was at 9am this morning.  It took about 1 hour via an IV.  Before that was a dose of Benadril and something else.  So far they have taken an EKG 4 times, my vitals about 6 times and about 20 vials of blood.  I should be done about 5:10.  I have no side affects to report so far.  I feel fine setting in this bed all day.  All day.  All this long, long day.

My first nurse was Andrea and the second was Semi.  Both are wonderful.

We may go to the Dearbrook mall after we leave the hospital.  If there's anything I like more than staying in a hospital bed it's rolling around a  mall.  April want to find a Hello Kitty store which has always been there.  Sadly it's no longer listed in the mall directory or the official Hello Kitty web page.  Maybe its there.  Maybe not.  Well see.

Fun times.

One night to go

Tomorrow is a big day.  My first infusion of my third treatment with BMS-906024 .  My hopes are high.  The possible side affects he listed mostly involve the digestive track, so I am not too worried.  However this is a drug trial so there are many unknowns.

The past few day in Houston were spent visiting family and friends.   Last night April went to 'The Paint Pub' with Denise and created a wonderful piece called 'Kissing in the Rain'.  Of course April is self-critical about it, but I like it a lot.  It deserves a place on the wall.  We may both go on Tuesday night with Denise and some of her friends.  I spent last night with April's step-mom, Charlette, and April's nieces, Emily, Nicole, and Jackie.  Jackie is 18 so she did not stay too long.  They made a cake, we watched Glee, and everyone had fun.  We almost fixed Chalette's car, but the tire was put on by Hercules so we could not remove it.  We had a yummy supper of chicken, rice, and lima beams.

Today we go back to Charlette's.  Dinner is pork chops, green beans and something else. I must be at the hospital at 7am so we go to bed early tonight.

http://www.gofundme.com/iudacg?pc=14_tw_2  .  Please spread the word.

https://www.clinicaltrials.gov/ct2/show/study/NCT01292655

Initial appointments done in Houston

My first appointments at Houston Methodist are done.  I met Catherine, the nurse who's helped me that past several weeks, and she was as helpful in person as over the telephone.  We discussed the study and the yet unnamed drug and its possible side affects.  I also met Dr Iyre, who heads this study at Houston Methodist.  He's also very nice and seems competent.  I know 'competent' does not sound like a ringing endorsement, but please remember my position.  This is not the first doctor who 'maybe' has a treatment.  I have a lot riding on this.  My next appointments are Friday.  I get a EKG and a fresh CT scan.  I am in the study as long as my heart if healthy.

My first treatment is Monday morning.  I must be at the hospital for most of the day.  The treatment is intravenous and takes about 3 hours.  Add time for more tests, lunch, more observations and then I'm done.  I expect to be bored.  This is followed by more tests and observations on Tuesday and Thursday.

You may read more here:
https://www.clinicaltrials.gov/ct2/show/study/NCT01292655

Houston itself is exactly as I remember.  Everything is at least an hour away, the speed limit is what's posted plus 75%, there are no straight roads, and there are no roads not under reconstruction or needing reconstruction.  At least it's February and not 132 degrees.

Now it's 9:30pm and I'm tired.  Tomorrow we visit one of April's friends.  Then more hospital stuff on Friday.

More later.

Preparing for Texas

Tomorrow we drive to Texas for my appointments at Houston Methodist which is Wednesday. Thursday and Friday I'll be tested and evaluated for acceptance into their drug trial.  They have all my information from up to now so I expect to be accepted.  

Acceptance is followed by my first treatment on Monday, Feb 23, which is followed by observations for the first week.  I've never been in a drug trial so I don't know what to expect.  This trial is evaluating the human tolerance so i expect something to happen.  I am intrigued and frightened by all this.  Will i notice changes?  Will my eyes change color?  I'll let everyone know.

Fortunate for us we have wonderful relations in the Houston area.  We'll stay with April's sister, Denise, during this trip.  Otherwise it could be the 'Shack by the River' Inn, which April would certainly object too.  Denise is a wonderful person and I look forward to this visit. My parents are watching our dogs, which is equally great.

My current state is slipping.  My walking continues to improve, but my stamina is dropping.  Between 7 and 10 days ago I noticed a small vibration in my breathing.  It did not bother me but it has worsened.  The small vibration evolved in to an audible raspy sound, which slowly worsened in to occasional labored breathing.  Breathing at rest is not a problem, but I lose my breath during extended exertion.  My cube to the break room, which is about 100ft, is about as far as I can go without stopping.  This is terribly frustrating.

Everything before this could be muscled through.  Missing a leg is a huge inconvenience, but I consider it an athletic challenge.  Practice and perseverance allowed me to walk again.  A lack of oxygen is harder to overcome.  I have high hopes that this trial will reverse these symptoms.

We may be in Houston for 2 weeks.  I hope to have good news when I return.  I appreciate everyone's help and patience with me.

A day at the beach.

One night I dreamed I was walking along the beach with the Lord.
    Many scenes from my life flashed across the sky.
        In each scene I noticed footprints in the sand.
            Sometimes there were two sets of footprints,
                other times there were one set of footprints,
                    there was a period with one foot print and a drag mark,
                        and another with two line and then 4 lines?,
                            and then back to one and that drag mark.
                        What really bothered me was I noticed
                    periodical depressions where something landed...hard.
                One interval was filled with a large stain...IS THAT BLOOD!
            When I was suffering from
        anguish, sorrow or defeat,
    I could see only changes in the sand.
Those damn waves make reading this trail a pain.  Stop that, Lord!
So I said to the Lord,
    "You promised me Lord,
        that if I followed you,
            you would walk with me always."
                Then I said to the Lord.
                       "What the HELL!
                        In the most trying periods of my life
                            there have only been one
                                set of footprints in the sand.
                                    Why, when I needed you most,
                                        you have not been there for me?"
                                    The Lord replied,
                                "The times when you have
                            seen only one set of footprints,
                        is when I carried you.  Drop some weight, dude
                    There was a point when I tried
                a wheelchair and then a gurney,
            but that sucked in the sand.
        and I dropped you a few times.
    Sorry about that,
and the leg too.