Day 2 at CTCA

RIt's been a full day and I have an MRI yet to go.  Then I have tomorrow.

For now I am in between appointments.  I'm setting the in the main lobby which is at one end of the main concourse.  In front of me is a 10+ ft Christmas tree.  To my left is a harpist.  Behind me is a faughx fireplace and two fish tanks with tropical fish.   While I wrote this paragraph an older couple left the cafeteria and began singing along with the harpist.  It was 'Moon River'.  It is an interesting place.  This area does not have the feel of a hospital.  It could be a hotel or mall or fancy office building.

All this is overwhelming.  April and I are coping the best we can.  

I work everyday I can so I may spend time with friends and forget about the cancer.  Setting here surrounded by reminders is very taxing.  CTCA does their best to hide the reminders but they walk down the halls and they are behind every wall.  It is a beautiful place but it is a giant reminder. 

It's not a surprise when I say I'm not like most people.  Most of my friends are not like most people.  CTCA spends a lot of time on the psychological aspects of treatment.  All the attendants, food, and window dressing cover the truthes well, but that does not work on me.  I know there's a man behind the curtain.

Will I come back?  Maybe.  It depends on their recommendations.  Ultimately I want the best place with the best people and best outcome.  Reminders will exist no matter where I go from here.  Maybe today's outlook is because I'm tired and grumpy.  Maybe I'm this years Grinch, Frau Perchta, Scrooge, or Kallikantzaros.  Tomorrow is another day.

Day 1 at CTCA completed

We're here in Atlanta, GA visiting CTCA.  We've completed day 1 and we're headed back to the hotel.  I can't call today too productive, but we talked to several people about my case.

We reviewed in great detail what's happened in the past 13 months.  What, when, where, and some whys.  I also shared the CDs I brought with my test imagery.  Dr Broudy (JB) took lots of notes and scheduled my next steps which begin Monday.  What does Monday hold for Me ?   Bone scan injection, MRI of my head, EKG, a talk with a pastor, and a mind and body consultation.  Tuesday has a CT scan and consultation after consultation.

At least we have a free weekend.  We've talked about doing a few things but have not decided yet.

More to come about what we decide.

Just relax

I've spend a lot of time learning to relax in the past year.  Learning the simple relaxation which does not require a vacation or night out or hardly any expenditure at all.  It only requires a few minutes or seconds.  Now I see that most people don't know what it is to relax and some can't relax at all.

When this is done I may join or start a relaxation class or group.  It would be free because why add stress to a relaxation class.  That's seems silly.

Disappointed

Last week I got a telephone call from Dr. Steligas office to confirm an appointment I have in January with him and Dr. Montgomery. The nurse that called ask about a recent CT scan because they want to do another CT scan and insurance was fussing about it. This prompted me to question if Dr Travis was communicating with Dr. Steliga. After that I called Dr. Steligas office and spoke to the nurse.  She's did some checking over the past week and found there hasn't been any communication about the new tumors or for the treatment that I went through. This is very disappointing.  At my next appointment with Dr Travis I will talk about what he's doing or not doing and who he is communicating with. I expect Dr. Travis at Highland oncology to communicate with as many people as possible about the situation so that I can get whatever treatment I need.

In the meantime life goes on.  Today I got my teeth cleaned at the Dr Hanbys office. It was good to see Rolanda the hygienist that always does my teeth. Tonight we're going to eat at San Miguel's restaurant for a fundraiser of sorts.  I'm looking forward to seeing who's there and how it goes. I'm hopeful that this will spawn future events.

Going to Atlanta

My patience is groing short.  Nearly 1 month ago Dr Travis told me that their treatments were not helping.  He told me that I had multiple spots in my lungs and their treatments were not helping!  Through all of this I have believed that this would work out.  This was the first time I questioned my mortality.  Now I must change gears.  We've started several things.

1) Dr Travis sent my tissues to a company for molecular testing.  The results came back last week.  They found that my cancer uses a intercelular pathway called Notch.  Dr Travis says there's a drug trial which works on this Notch pathway and they are working to get me in.  They should know something any time.  I am not waiting for this.

2) I called Advanced Medical something, which Blue Cross recommended.  They are accumulating all my records up to now and they will give a review and second opinion.  My fingers are crossed that they find something which everyone else missed.

3) We contacted Cancer Treatment Center of America.  We leave Dec 25 and fly to their facility in Atlanta, Ga.  April and I will stay until Dec 31.  Terah is coming too but she can only stay until Sunday. CTCA is also accumulating my records and they'll put me through more tests.  They'll have they're own recomendation by the end of the visit.  I have heard good things and bad things about CTCA so my feelings are mixed. 

4) April and a friend (nameless until she says I can use her name) are starting some fundraising efforts.  They opened a special bank account and are using facebook and more to get the word out.  I don't know how far it will go, but my hopes are up.

5) Other friends have some experience with cancer and homeopathic treatments.  We're looking in to it.

As you can see we started several things.  Something must work.

Hurry up and wait

The results are in.  My cancer uses a 'notch' pathway.  There is a company in Houston which has a 'notch' pathway inhibitor, but it is in trial and not FDA approved yet. Hopefully I can become a part of the trial.  Dr Travis is contact them and hopes to know something by Friday.

If I am accepted then it may require periodic travel to Houston, which is not terrible because we have family near Houston, but I prefer my treatments here for obvious reasons.

So there it is.  More waiting.

December is here

This is December.  The past month has been long and slow.  I am just now coming to grips with everything which has happened.

Three weeks ago the doctors told me that all the treatments so far did not help.  The then sent my tissues to a lab for 'molecular' testing.  Hopefully they discover some magic bullet which will help.  Today I get the results.

On a positive note I bought a 2013 Cheve truck and we drove to Wisconsin to visit my sister during thanksgiving.  That was a fun trip.

More to come.