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.

I'm caning it

I can walk with one cane when using my new leg!  It’s not always pretty, but I get from here to there and back again.   The occasional fall hurts my pride more than anything else.  Everyone at work is awesome.  Jeff, Bobbi, or someone walks with me to get coffee.  This is good because falling with a cup of hot coffee is far less fun than falling alone.

Terah brought me lunch yesterday and of course I fall when we’re walking from the break room.  She handled herself well as she watch me hit the ground.   I wrenched my shoulder a bit and it took a minute to get up, but nothing is really hurt.  Terah later told April that she had a heart attack when I went down.  Poor girl.

In December I ask Snells (the prosthetics place) to lengthen my leg.  Walking without crutches changes my posture and Jeff mentioned that my leg looked too long.  This made me reassess several things and I think he’s right.  I need Snells to shorten it.

I am pushing really hard so I’ll be ready for whatever happens.  The thoracic surgeons made me set up when they described what could happen to my lungs.  Loosing too much lung capacity would not stop my progress, but it would hinder it greatly since breathing is so important.  More progress now makes any recovery easier.

My Houston trip is less than three weeks away.  I am more than a little excited about it.  That’s excited in the good way and excited in the not so good way.  The nurse (Catherine) at Houston Methodist is very helpful and has described the process as best as she can.  This is helpful, but I still don’t really know what’s going happen.  Whatever it is I’ll do it.  Bring it!

my next step is set

I finally received a call from Houston Methodist.   I have an appointment on February 18^th for an initial visit/consultation.  Then next two days are examinations and tests to determine my worthiness.  If all goes well I begin my ‘infusions’ in the following Monday or Tuesday, which is day 1.  The next day (day 2) is observations and testing to verify I can tolerate the drug.  The same with day 4.  Then I come home.  I will be in Houston for 8 or 9 days on the initial visit.  I return each week for another infusion, which continues for 6 weeks and brings me to early April when I am retested for everything.

February 18 is 3 weeks from today.  It seems so far away and it feels like it is tomorrow.  April and I talked about it last night, but not in very much about the detail.  I’m sure we’ll drive and stay in a hotel in the Houston area.  Houston Methodist is near the Zoo, which is near the middle of the City.   Aprils step-mom lives north of Houston and Aprils step-sister lives to the southeast.  I am open to any reasonably priced and located hotel.  Suggestions are welcome.

We are very hopeful. 

No news is still news

This week was anti-climactic.  Tuesday was a drive to Little Rock and a visit with the two surgeons who did my work last August.  Thursday was a visit with Dr Travis at Highland Oncology.

Tuesdays drive was long and slow.  Both Dr Montgomery and Dr Steliga agree with the other doctors.  1) Surgery on my lungs will not occur until after another Chemotherapy.  The tumors are situated where removal would severely affect my lung function.  2) There are a few chemotherapy drugs which may help.  They will leave chemo decisions to the chemo doctors. i.e. Dr Travis.

Wednesdays appointment was very short.  Dr Travis and I spoke for only a few minutes.   He says the Methodist hospitals near Houston has a drug trial which Dr Travis believes may help.   He shared a questionnaire about my qualifications and ask that I and April discuss it.   The questionnaire lacks any information about the treatment, which is very disappointing.  I will certainly do it because it’s what I must do.

I wish I had more information about the treatment.  Is this one treatment per week or per month or per day?  Is it 5 treatments per day?   Does is require an overnight each month or a week long treatment?  There are too many unknowns to intelligently consider it, but it is what I must do.  Dr Travis’ office will call me today and ask for our decision, which is Yes, and then they’ll start the process.  I hope to know more soon.

Stuart Scott

I did not know Stuart Scott and I did not know he had cancer.  I only know what I've heard and read.  I think we could have been friends.

Back home from CTCA

We flew back from Atlanta on New Years Eve.  It was a good flight with only one bump in the middle.  The TSA guys were very helpful and understanding about my leg.  The wheel chair driver took us through back halls and directly to a TSA checkpoint.  The screening took 2 minutes and we were done.  Missing a leg really sucks but there are some advantages.

The trip to CTCA was a good one.  They confirmed everything Dr Travis at Highland Oncology has said.  I have 6 spots in my lungs.  3 are definitely tumors and the other 3 may not be.  The largest is near my bronchial tubes and heart and is about 1 inch in diameter.  The second largest is about 1 1/2 centimeters and the rest are pretty small.

The pulmonary (lung) surgeon on my case is Dr Christopher Parks.  He looked at all my scans and seemed optimistic about removing everything.  The largest near my heart will be troublesome, but it's doable.  The key is getting a cancer treatment to stop the tumors from growing or spreading.  Then it's time for a surgery.

On a more positive note my brain MRI is clear and my bone scan is clear.

My oncologist at CTCA is Dr Patricia Thompson.  She is one of the best in the country with this type on cancer.  She looked at everything and she recommends a drug named Votrient.  I believe Votrient was also on Dr Travis' short list of things to try.  I say 'everything she had' because the raw report from the recent molecular testing was missing.  Highland had only a summary.  It's on my to-do list to track that down and get it to Dr Thompson.  She'll then review the report and offer any new recommendations.

My overall opinion of CTCA is a good one.  They care about every person who walks in.  It's a beautiful facility and it's designed to be as efficient and affective as possible.  Parts of it are wasted on me, but these parts are vital for others.  I would  recommend them to anyone who ask.  This does not detract from my opinion of Highland Oncology who does a equally wonderful job.  Highland is a smaller organization, but their treatment and recommendation have been the same.

What now?  I have established appointments in January.  January 13 is a drive to Little Rock for appointments with Dr Montgomery, who removed my leg, and Dr Steliga, who removed part of my lung.  January 15 is an appointment with Dr Travis at Highland.  I'll discuss everything with each and then we make a decision.  If the Houston facility accepts me in the drug trial then we probably go for that.  If not then we talk about the next drug to try (maybe Votrient) and go for it.

For now it's more waiting.

Thank you, everyone, for you hopes and prayers.  Please know that I am doing well.  My spirits are dampened but I still enjoy life and living.  The only way to go is forward.