I will consider this day 1 of my New recovery

Wednesday is here.  I’ve had 24 hours to review all of this inside my own head.  I have come out the other side with a bunch of feelings.  I know that not all of them are rational, but they are feelings.  Feelings and emotions are not supposed to be rational, which is why we have them.  Take away the irrational aspects of emotions and you take away our humanity.

In the past 10 days I discovered that I am pretty bad shape.  The tumors have grown (apparently a lot) and now infest the part of my right lung where the lobes intersect.  This is the point where my lung connects to me chest cavity.  All this means it is pointless to remove anything, because there is no way to get it without removing my entire lung and parts of my check, which is impossible.  This angers me.

This journey started 18 months ago, when my leg began to trouble me.  14 months ago they diagnosed it as a tumor and said they want to treat me before they operated.  This did nothing and I lost my leg anyway.  10 months ago they said I had tumors in my lungs wanted to treat me first, which did nothing and the tumors grew.  3 months ago I joined the drug study in Houston, where they said they should treat me first, which did nothing, and now I am here.   I am stuck with tumors in my chest which are inoperable because they are too big and invasive.  Why did we not remove these 6 months ago?  I can take the pain of surgery and recover with a smile.  I am having trouble with smiling through this.  People telling me to wait because maybe the next thing will work.  Next, Next, Next.

To anyone who reads this.  If you have a sarcoma and some doctor says you should wait because some treatment might work then I say this.  Press them HARD to have the surgery and remove whatever it is.  This is the irrational part.  It feels like the doctors and looking for that magical cure which gets their name in a paper.  The simplest answer may be the correct one.  Cut it out and then move on.  Watch your body and follow-up, but cut it out.

I am so pissed about all of this.  That’s my rant.

What’s next (ha) for me?  I expect Dr Iyre to drop me from the trial in Houston.  If it’s not working then I need to move on.  I have a few choices in the next few weeks. 

1. Start a standard treatment immediately.  I have an appointment with Highland Oncology next week to discuss some options.  The first options is the drug Votrient.  I blogged about this previously and I invite you to read about it.  There’s no need to rehash those details.
2. Do nothing and enjoy the next few months.  This is mostly out of the question.  I will enjoy the next few months, but I am doing things.  This is not over.
3. Contact Cancer Treatment Center of America (in Atlanta) and discuss options for treatment with them.  I liked the people and facility in Atlanta, but I don’t know of any great advantage with them.
4. Join another drug study.  I spoke to the coordinator of several drug trials which are in Maryland.  She emailed the forms to start the application process.  Her name was Jessica and she was very nice.  Dr Iyre (in Houston) suggested that we contact her.  One disadvantage is that most drug trial require a ‘clean’ period before I start the trial.  This rules out option 1.

For my immediate future I return to work and do things which I like to do.  We’ll probably visit Silver Dollar City a few times and go to movies.  I enjoy going to movies.  I also enjoy beer in moderate amounts and I like being outside.

I continue to believe that everything occurs for a reason.   The protagonist of every story goes where they need to go for the story end where it should.  Maybe my story is being written by someone in a faraway place.  Maybe mine is a story by M Night Shyamalan and a dragon will emerge from the bushes and fly me to Asia where I discover I am a time traveler and this reality is only a dream by the Doctor.  Who really knows?

It's Tuesday...

Bad news.  The PET scan revealed more expansion than expected and it is not operable.  Dr Iyre will probably remove me from this drug study because the treatment is not working as believed/hoped.  I'll have more information to share after I talk to Dr Iyre.

It's Monday!

Now I am waiting in the registration area of the Outpatient Center of Houston Methodist.  I know it's hard to believe but I am waiting again.  Perhaps the worst parts of this ordeal is the waiting.  The consistent waiting for more waiting.  The past few days in Houston were clouded and full of imtermitant rain.  It helped set the mood for the consistant waiting.

April stayed in the hotel today because she said she needed a break.  I won't pretend to understand how she feels about all of this, but I wish I could take a break too.  My only break from this is when I am home and working and pretending things are normal.  I never appreciated normal until I lost it.  

...

I am now on the 17th floor in the nuclear medicine department.  At least the view from the waiting area is better.  This department is usually very efficient (sad that I know that) so I expect my wait to be short.  I'll post more when more is known.

It's Sunday!!

No one ever called with my biopsy results.  This is disappointing but not too surprising.  There is a lot involved in a thorough biopsy so I will be patient and wait.  While I wait I prepare for my PET scan which is tomorrow.

Tomorrow still looms as an incredibly important event.  If the results are good (which is a strange way of considering it) then the doctors want to remove a significant portion of my right lung.  If the results are bad then they won't.  Bad results mean I continue with therapies and hope for better results later.  Good results and the lung removal are not a cure, but maybe it helps.  Maybe.  For today I continue to breath well, April snores as she naps in the hotel room,  and we wait.

Tonight we go to Jumping World to meet Denice and our nieces which should be fun.  We've heard a lot about Jumping World during our several visits to Houston.  It's one of their favorite places to go.  

My mother and I saw the movie Ex Machanico.  Saturday we say Mall Cop II and Furious Seven with the girls.  This was my second time to watch Furious Seven, which is very good.  Mall Cop was exactly what you would expect.  Take all best parts from Mall Cop I and then do that again.  I chuckled several times.

I continue to be greatful for everyday.  I continue to be thankful for my friends and family.  I continue wait and wait and wait.

Its Friday!!!!

Yesterday went well.  They used a bronchoscope to examine my lung from the inside.  They removed a piece of tumor which was was blocking my right lung.  This is only temporary because it will grow back, but the extra breathing is wonderful.  I forgot how nice it was to take a deep breath.

Now I wait some more.  The tissue they removed and a biopsy from my lymph nodes went to a lab.  Someone is supposed to contact me today with more information but it's 4pm and I have not heard anything so I am calling.

I know I should be scared, but I feel so good it's hard to feel anything but good.  I know it will come back or they may remove that piece of lung entirely.   At least I know what to expect with a partly unfunctional lung.  There's some good in everything.

For now I am all smiles.

One more long day

Tick tock tick tock.  It's 6:45 am and I am preparing for another procedure.  These are the worst moments of all this.  Waiting.  I know I'll be ok and this bronchoscopy is fairly harmless, but the what-ifs always creep in to my thoughts.

Tick tock tick tock.  Now it's 6:49 and my clicking on the phone woke up April.  She has a headache and it's time for me to smile a little and put on a strong face.  

Once more in to the jaws of uncertainty we race.

Things can happen fast

I took a real body blow today.  The tumors are growing more slowly, which is incredibly good, but one of them is growing in a bad direction.  I missed the importance of this detail in my conversation with Dr. Iyre, but it was slammed home today with Dr. Ramchandani, which is the thoracic surgeon.

One of the tumors was near, but not touching, one of my bronchial passages.  We've discussed this point at work.  The tumor has now infiltrated that bronchial tube and Dr. R is very worried about this.  He is scheduling a bronchoscope for Thursday or Friday to visually inspect the tumor.  He is also scheduling a PET scan for Monday.  If the results are favorable then he'll schedule a lung surgery ASAP.  If the results are not favorable then I search the country for a more aggressive treatment.  

So, what does this mean?  I will not be back this week.  I am stuck in Houston until some questions are answered.  Possibly I will not be back next week.  A surgery on my lungs has always been in my future but I never really expected to be now.  I always felt it was out there somewhere.  It's like knowing there are bears in the woods and then walking up on one.

That's all I have to say about that.

Another Sunday morning in Houston

Sunday morning. This is the week of truth.  At 10:30 tomorrow (Monday) I get a fresh detailed CT scan for my cancer.  This is a comparative scan against the CT scan from 2 months ago.  This will tell us if this treatment is working or not.  The appointment to discuss the results is at 2:00, which could be 3:00 since this is a doctors appointment.  The time between the scan and the appointments will be a looooong few hours.  For now I am eating breakfast in the Hampton Inn with my mother.
That brings me to this trip.  April, my mom, and I drove here yesterday.  It was a typical 10 hour drive and we arrived about 7pm.  My sister flies here tonight and we get together for the appointments in the morning.  We did see a few things during the drive.
   1: We hit a traffic jam as we approached Dallas.  The cause was a car/SUV which appeared to have hit head-on with a concrete barrier.  The was a messed up car.
   2: We drove another few miles when I noticed a policeman acting strangely on the side of the highway.  My first thought was it was because of the accident we passed 5 minutes before.  The next exit had a sheriff preparing spike strips.  Then another sheriff races passed us and stopped on the side of the highway to lay more spike strips.  We are still cruising down the road at 65 mph.  Now I see the police lights a mile behind us.  5-6 police are chasing a dark red sedan.  We slowed and pulled to the right as they passed us.  The sedan has 2 blown tires and the chase was moving about 40 mph.  We start our drive again and found them all stopped about 3 miles later.  It's noteworthy that this was my seconds such involvement in a police chase.  That is another story.
   3:  Another 10 miles later we pass another crash in the north bound lanes.  It involved several vehicles.  It appeared that someone cut in to the HOV lane without looking and was hit by another car.  I saw at least 3 mangled vehicles.
   4:  Another 10 miles down the road we see a car engulfed in flames in the north lanes..  2 fire trucks are there beginning to extinguish the fire.
This was all within about 20 miles.  Our drive was smooth after that.
I have finished my breakfast and I am 24 hours from my scans.  Today we go to a play with Denice and Charlette which should be fun.  At the very least it is a wonderful distraction.  Otherwise I will stare at the wall and ponder everything.

It's not a terrible day

Today's visit and infusion went as every other;   Benadryl still makes be drowsy, the infusion is painless, and everyone is wonderful.  The visit with Dr Iyre was not discouraging.  The numbers are not as precise as I want, but they insinuate no growth, which is good.  My next scan in Houston, which is more detailed, is April 20th.  It should have more concrete results.

For now Dad and I are driving toward home.  My namonia is much better.  The cancer numbers are not worse.  It is not a terrible day.  That is as much of a smile as I can muster.  :)

Back for another treatment.

I am back for another treatment.  This week my dad drove with me and it was the same long 10 hours on the road as every other trip.  It was in the 50s and rainy nearly the whole way.  Now I am waiting for my pre-treatment lab results to get here.  Then I may have my weekly treatment.
I have my CT scan images from last week.  Catherine, the nurse running the study, ask me to bring them.  I may get an appointment with Dr Iyre to discuss my namonia and the images.  Maybe he sees good things.  Maybe he see bad things.  As always I hope for the best.
My spirits are dampened today.  It's slowly becoming harder to put on a smile for everyone.  The stress is slowly getting to me as this progresses.  I find myself thinking of bleak prospects and planning for unhappy events.  Maybe todays news will reverse that.

CT scan is done

I am out of the ER and headed home.  The CT scan showed a patch of namonia  in 1 lung.  Probably caused by the tumor  blocking my bronchial passages.  I got a new antibiotic and two cough medicines.

I called Carherine (the Houston nurse) and she ask that I bring the images from the CT and the radiologist report.  I have the images but I can not get the report until tomorrow.

It goes without saying that this sucks.  I hope the antibiotic helps quickly and it gets me going again.  I still do as much as I can, but this doesn't help.

My first related ER trip

Today I am in the Springdale ER.  It started with chest issues a few weeks ago and I was treated for bronchitis.  Last week the Houston doctor prescribed Flovent and Albuteral to help clear my lungs.  These help for a little while, but my symptoms have accelerated in the past 3 days.

Around last Saturday I gained an occasional hard coughing fit, which lasted several seconds.  This leaves me short of breath and tired.  The recovery is a few minutes.  The frequency of the coughing increased last Tuesday and Wednesday and the recovery tine increased too.  The coughs began leaving me out of breath as if i had it knocked out of me.   This is frustrating and frightening.  It disrupts my work and everything I would call normal.  I so miss normal.
Here i am.  Sitting on an ER bed with an IV in my arm.  This is completely not fun.  i shared with the doctor my latest CT scan report and he is consulting with others.

Everyone, go outside for me and enjoy breathing.  I've breathed my entire life.  At times I have breathed hard.  Other times I have breathed deeply.  Sometimes I have held my breath and then enjoyed the sweet return of air.  Everyone, please enjoy breathing.

What's coming?  The next 2 weeks are regular trips to Houston.  One trip with my dad and one trip with Terah.  Then on April 20th I get a fresh CT scan!  This is the scan which reveals if the treatment is working.  That week April, my mom and I will drive to Houston.  My sister will fly and meet us.    It is a big few days.

Something just changed.  The ER doctor had a chest X-ray done.  It was inconclusive, so he is ordering a new CT scan.  Results to come.