The Watch is Over

On October 15, 2015 Damon lost the battle but won the war.  He is now at peace.  He no longer feels pain and is enjoying the rest of his eternity with all the friends and family that went before him.

I miss him.  We all miss him. 

I am forever grateful that I was able to spend the last few months with him and give back some of the love and care he showed to me my whole life.  The outpouring of support from all the people that touched his life was and continues to be a comfort to our family.

I have tried to bring to a close all of the things he was trying to accomplish during the last few weeks of his life.  He was at peace with himself, his choices and his place in the world. 

One of his last wishes was to give each and every one final moment together.  A memory of your friendship to help each of you understand how much you meant to him and to give you something to hold onto when he was gone.  He was able to do that with many, many people.  Unfortunately, time and circumstance didn’t allow for him to complete that task.

On behalf of my wonderful brother know that he cherished every moment he had with you.  Each person that touched his life left a lasting impression.  He was humbled and honored to have been a part of your life.  Hold on to that special memory of him and know that it meant the world that you shared yourself with him.

He was and continues to be my big brother.  He bravely stepped forward to lead the way.  In our family he happily went first, testing the waters for the rest of us.  He made a lot of mistakes and then helped others to avoid the same pitfalls.  He charged headlong into life with enthusiasm and determination.  He left a wake so wide and so deep that we will forever feel the ripples.  Because of the love and acceptance he showed, I cannot even feel anger at his passing.  Just sadness that such a bright soul had to leave so soon.

On behalf of our family, thank you all for being a part of his life.  Thank you for the outpouring of love and support.  Thank you for showing us just how much of an impact he had on the world.

We are bereft, but because of his grace we will carry on. 

Angelica Chalmers, Damon’s little sister.

One last request:

If you are reading this, please take a few moments to share some thoughts or memories of my brother.  If you have pictures sharing them would be wonderful.  I plan to put together a bound copy of his blog along with memories, pictures and stories.  It will be distributed among the family and available to anyone else that might like a copy.  You can post directly to his blog as a comment on this post, or email directly to me at angchalmers@gmail.com.  Thank you.

From front to back: Damon Brewer, Angelica Chalmers, Milly Brewer, Alex Brewer, April Brewer, & James Brewer
Not Pictured(They were taking the photos) Terah Clark and Patrick Clark 

Damon having fun at the Walking Dead Tour in Georgia.

“Every day, think as you wake up, today I am fortunate to be alive, I have a precious human life, I am not going to waste it. I am going to use all my energies to develop myself, to expand my heart out to others; to achieve enlightenment for the benefit of all beings. I am going to have kind thoughts towards others, I am not going to get angry or think badly about others. I am going to benefit others as much as I can.” - Dalai Lama

ANOTHER Update.

Damon went in this morning had his pump for his chemo removed;he was retaining quite a bit of water so they gave him some Lasix through his pick line which is really made him feel a lot better in that matter.  And we did have tickets to go to the Razorback game tonight from a good friend, Michael C. at Damon's work, but Damon was just too tired; he's exhausted.  He's looking at me now because I said his name and woke him up. So we're going to have a nice easy evening on the couch watching sci-fi as usual; Doctor Who, some Underworld thrown in there & who knows what else and then bedtime!  I hope you have a great weekend !  God bless! Don't worry the tickets are going to good use!!!

Well,,,,,,

Damon went to his treatment today started the second day of the iPhone some treatment they found his pulse was elevated probably due to the dexamethasone that they're giving him both in the chemotherapy and at home so they told him to stop taking it at home he's pretty tired and we're both taking it day by day. As of right now I plan on going back to work Monday and taking a life day by day. I saw where Damon posted his spiritual feelings & of his belief that he is on the path that God has intended for him. My problem is I want God to leave him here. I am not prepared for God to take him away from us. He is a fantastic husband and a fantastic father & more importantly he is my best friend. I'm not prepared to live my life without him. I don't think that any of us are but we will all work at doing so because that is what Damon will want us to do. For now, I know Damon will go to work when he can and do everything he can to fight and live as long as possible; all I can do is pray that God listens to all of our prayers and leave him with us for a lot longer. He is a wonderful man and I love him dearly.  I can't say that enough. 

Great friend and family and busyness

April’s sister and step-mom are here for a short visit.  Not related to my ER visit, they drove to NW Arkansas from Houston on Saturday night with a stop in Van Buren.  They arrived about noon and we visited until 8:00.  Terah and Patrick also came to see them.  Tuna fish sandwiches for dinner, shared stories and it was time for bed.  We’ll meet again today after my radiation appointment for more visiting and then they drive to Houston.

My sister flew in Saturday night and she’s here until she wants to leave.  I plan to take advantage of her presence, which brings me to the busyness.  I have a lot to do.

I spoke to Arvest Mortgage last week about unloading the house.  He recommended reaching a realtor ASAP and starting the selling process.  I also need talk to the cemetery about plots, the chapel about possible arrangements, etc.  It’s a lot to process, but I need to get this done.

Everyone in my life is being great.  I know it's surreal and no one knows what to do.  I ate a great dinner at FogHorns last week with a dozen friends and family.  I have dinner plans this week with other friends and April is arranging some more.  I don't know what I would do if I wasn't surrounded by so many incredible people.

Life gets busier and busier. I don’t know where to begin.

I’ll start with recent events.  Sunday morning was spent in the Springdale emergency room.  I woke up about 3am (as usual) and had a small snack.  The fun started when I returned to bed.   I was not too sleepy and I decided to watch some Netflix on my tabled, which is easier to do if I lay on my left side.  This was a mistake.  Laying like that caused something in my chest to move and I think my heart literally stopped.  I popped out of bed pretty fast, smacked myself, took some deep breathes, and it started working again.  I sat there for several minutes and then lay down again on my back this time.  I lay there for about 15 minutes, listening to the Netflix, and just as I dozed off my heart began racing at about 220 bpm.   I could breath and my blood oxygen levels were OK, but that sucked.   This is not the first time for this to happen.  Normally I setup up and do some deep breathing, which causes my heart to return to normal.   That did not work Sunday morning.  I tried for about 15 minutes and my heart did not slow down.   I then woke up April and ask her to contact my mom, dad, or sister so someone could drive me to the ER.  EVERYONE arrived and we headed to town.  My heart rate returned to normal when we were about halfway to town, but I said to continue to the ER to get checked.

The ER was empty and they took me directly to the back.  Dr Ball and the staff was great.   I explained my situation and everyone was surprised/impressed by my chest x-ray.  The theory, which I agree with, is that my position restricted my hearts return blood flow.  This caused my heart to panic and beat at 200+ bpm to get the blood it needed.   Whatever it was finally freed up during the drive.  Sadly there’s nothing the ER could actually do about this, but it seemed the right place to go.  We left the ER about 9am and ate breakfast at Flap Jacks.  Other things Dr Ball was my bloow sugar was high, and one of my blood numbers indicated I may have had a blood clot somewhere, which would not be surprising.  Again, what can that really do about it.

This all caused some distress in my family.  My mother kept herself together while she was with me, but I heard she was vocal about things when she was in the waiting room.  April’s handled herself well, but I know this freaks her out.  I can’t describe my thoughts.  It is very freaky to know what's happening and be only a rider on the roller coaster. I compensate by being more controlling in different parts of my life, but that’s only a distraction.  I know my days are limited and I plan to enjoy each one.  Be it a home or work or somewhere with friends and family.  Each ray of sun or drop of rain is worth celebrating.

A smack in the face

Today was my third radiation treatment.  It went well, as far as I can tell, and appears to be helping my breathing.  That’s the good news.  There’s bad news too.

I spoke with both Dr Smith (Radiation) and Dr Travis (Oncology) today.  Each presented a different opinion, but both shared a common thread.  I do not have a good prognosis.  I ask direct questions of each and each gave me direct answers.

Dr Smith said I was VERY lucky to be here now.  He did not expect me to survive last week when my airway collapsed.  My radiation treatment is essentially an Emergency dosage which they do not do under normal circumstances.  The radiation is attacking a fist size location surrounding my esophagus and trachea.  This is to open my airway so I can breathe (which is important) but is also affecting everything else in the area.  This only buys me time.  Dr Smith also said there was nothing else he could do beyond this.  The rest of the tumor will continue to grow and squash everything, which will eventually suffocate me.  He suggested contacting a Hospice and begin making preparations.   His observations of the growth suggest I have 4-6 weeks.

Dr Travis is slightly more optimistic.  He also says I am lucky to still be here and the radiation is an emergency treatment which can probably not be repeated.  However, we have a plan.  In three weeks (Sept 29) I get another CT scan.  This may reveal if the last dosage of ifosomide (the last chemo) did anything for me.  I believe it was and that this breathing episode is related to my fall at Foghorns.  I think the fall caused some type of injury to my trachea, which cascaded what happened last week.  My hope is to continue the Ifosomide treatment after the CT scan.

I plan to Fight On.

Db

A very terrible, horrible, nasty day.

Well, Damon and I are In shock.  The information that we received today was not what we expected, at all.  As you know, for those of you that read this blog, Damon has been feeling much better for the last week or so.  For those of you that have been in direct contact with one of us during the last 10 days to 2 weeks, Damon's physical condition has been improving.  He has been feeling better, such as his breathing has improved, his stamina has been better and he mentioned, on several occasions that he could feel that his right lung was moving more oxygen and that he felt like he could feel that it was beginning to re-inflate, that he could take a deeper breathe.  His coughing was also much improved and even sounded better.    Even better, while at a regular office visit with Dr. Travis, he smiled at me while he was listening to the air flow in Damon's right lung.  He stated that, "He has about 50% more air flow in that right lung when compared to the last time I listened to him."  We thought that we were given phenomenal news at that point.  So what happened to change things so drastically in the last several days to the last 2 weeks??

Hopefully we will have an idea of that aver after we see Dr. Travis on Wednesday.  I know how much Damon means to those of you he has the absolute honor of calling friends.  

We are and feel very blessed to have people, such as those we call friends, in our lives.  Now, as in the past, you all keep asking if there is anything that you can do for us.   I wish  there was.  For right now, all that we ask is for continued and more prayers.

April

Ups and Downs and Ups and Downs

Friends, here’s what’s happening.

I was at work all last week.  It felt good and I believed I was improving every day.  My breathing improved and my energy slowly improved, but I still needed help with my wheel chair.  I thank you all for that.

My brother was in town on Saturday and we had a wonderful afternoon. We went to a movie, played in the local arcade (Arcadia), and we ate lunch and dinner.  It was one of the best days I’ve had in several weeks. Nothing good happens without some cost.  We ate lunch at Foghorns in Fayetteville, which was yummy.  I slipped and fell while there and recovered quickly or so I thought.  I landed on stump and did not hit my chest or head or anything else.  This was at lunch and the rest of the day was great.

I awoke with my chest very congested on Sunday, but I was OK.  Monday morning I could barely breathe at all.  I woke up April and we drove straight to the doctor.  It was that or the emergency room.

Monday I was X-rayed and CT scanned.  They determined that I was in dire straits.  The tumor has consumed my lower trachea which it is about 90% closed.  To add complication there is a growth which is forming a flap near the narrowest opening.  If I cough wrong or lay wrong then this flap closes my airway, which causes a major coughing episode until it clears.  You can imagine how uncomfortable this is.

What happened between Saturday and Monday?  I believe the fall jarred my check cavity and caused some bleeding or inflammation in or near my trachea.  This slowly closed or nearly closed the already small opening, which gradually choked me.

I spent virtually all Monday and Tuesday and Wednesday in doctor offices.  I spoke with Doctor Smith (Oncology Radiation guy), Doctor Counce (thoracic surgeon) and Doctor Travis (Oncologist).  The bad news is this is not operable in its current state and any type of chemo is too slow.  Which leaves radiation so the doctors at Highland put me in the last lane for radiation treatment.

The radiation treatment is a focused attack on the tumor which will hopefully clear my airway first.  Breathing is very important.  Then expand and attach the rest of the tumor which is essentially my entire right chest cavity.  The radiation treatments are Monday, Wednesday and Friday.  My first treatment was yesterday.  Lying in the machine is very comfortable, which is great, but I can actually feel the treatment as it moves across my body.  It’s not painful, but I can feel it.

Today I certainly feel much better.  I am using the oxygen and I am still tired, but it is better.  My breathing has improved each day with a definite improvement this morning.  I cannot say it if it because of a gradual improvement from the weekend event, or if it’s from the radiation treatment.  Whatever it is I will take it.

Moving forward.  The side effects from the radiation are numerous but mostly minor.  They won’t kick in for a few days and I can’t wait to see what happens.  My hope is for continued improvement and then return to the office Monday.
The lesson learned and take nothing for granted.  I have to relearn this lesson each time I feel an improvement.  Add to this that my hair is coming out again.

I appreciate everyone’s support and the messages.

Feelings

Someone recently ask me what I was feeling.   Honestly I am feeling very helpless.  Too much weekness and pain to describe in this.  The pain is both physical and mental.  Toss onto the pile the clothe dryer being a b!^&h and we trying to clean out the house.

I've been strong my entire life and this change is harder than I can describe.  The cause is completely different and I claim no great heroism in my life, but I do get tears every time I see a wounded warrior commercial.

I continue to believe the treatments will work.

That's enough said.  I need to get in bed and build my strength for tomorrow.

Thank you to everyone for your prayers and thoughts.

Things may be getting better,,,,,but we still have a long way to go!

Damon saw Dr. Travis just a few minutes ago.  Damon explained to him that his pulse oxygen is higher and that his pulse rate is lower, that his cough actually sounds better and he is feeling better when the cough and tightness in his chest are concerned.

Dr. Travis listened to his lungs and he had a slight smile when he said that " It sounds like he has a 50% more movement in his right lung when compared to a few weeks ago!!!!!  AAHHH!!!!!

Damon will be coming back to Highland every week, Wednesday's around 1:00, for labs, then x-Rays and the another treatment of this nasty Ifosamide.  As long as it IS working & Damon can physically take the treatments, we will do up to 6 more treatments.  At that point we will discuss surgery.  But if surgery is decided on, he will have to have either another treatment of this Ifosamide or radiation and then go straight to surgery.  Mainly because every time they have done surgery on him, the cancer spread.  So having the treatment or radiation immediately before surgery will help because it would kill the edges of the tumors and therefore make it more difficult for the cancer to spread.

With everything we have been through, I must admit that I am scared to hope but the cards have not been dealt in our favor.  But Dr. Travis smiled before he left the room and said, and I QUOTE: "Congratulations.  I think you may be getting better."  Of course, I cried.  But even thought he a

said that, we have to be realistic and understand that we won't know anything for sure for another few weeks.  But I am asking everyone reading this blog to continue praying for Damon.  He is such an amazing man and I am the luckiest woman in the world to be able to call him husband and best friend. I want to thank everyone agIn, to those who care so very deeply for Damon and wish him nothing but the best.  We both love all of you so very much!  We still have a long road ahead of us but we are not going  to quit his fight!!!

Still fighting!!

Well, here we are again! Damon has another bout of pneumonia  and had an x-Ray, CT Scan, an MRI OF THE HEAD & blood work Tuesday. The MRI came back negative, thank goodness! I know I was very scared that he had a tumor on his head but he doesn't!!  The x- ray showed pneumonia and his CT showed that all of his tumors have definitely grown in size. The new study in St. Louis is underway.  The doctor from there is Dr. Bryan Van Tine, who said to expect an increase in size. Apparently this study worked well for melanoma and his sarcoma is in the same cancer family as melanoma. 

We are going to be leaving Sunday June 19th to go to Chicago for his work from Monday, June 22, leaving there Wednesday 24th to drive back to St. Louis so he will have his treatment Thursday, June 25th, and home Friday June 26th.  Then he has to go back to St. Louis on Sunday June 28th to have another CT Scan on Monday and a biopsy on Tuesday June 29th. Should be home that Tuesday or Wednesday.  

Hopefully we will be told that it has finally started to work. Apparently, as I said earlier, in the melanoma study the tumors would grow and then it would finally begin to work and begin making the tumors shrink. 

 I have never been so scared in my life, and I have been through a lot of things, both with Damon and without. I feel as we are being tested and the test is how hard we are willing to fight for Damon's life. I can honestly say that there has only been one other time I was willing and able to to fight so hard for something and that was when I was pregnant with my daughter. I was in bed the entire 9 months due to pre-eclampsia and being displayed to 5cm at  month 3. We had to stop labor 4 different times. So fighting for the life of someone I love in not new to me. But this is different kind of hard that I cannot explain.

I have never been more proud to be able to call myself Damon Brewer's wife. His strength and determination is an amazing thing to see and he continues to amaze me every day. I am learning to be stronger by using his example. He taken such good care of me the entire time we have been together. Now it is my turn to take care of him. I know I am still learning how to do that. I am and will make mistakes. But I will never stop being there for him and taking care him as long as God allows me to do so.  

I want to thank our friends for everything you all continue to do. From support, shoulders to cry on to fundraising. You have a done so much we love you dearly for it.  It is truly in times like this that we find out who our real friends are. We love you all. 

More to come later! Sorry for any typo's!!

1.3 liters

This was a hard 3lbs to lose.

Yesterday was spent getting a biopsy from a tumor in my chest wall.  This was was a little scary.  Not from the procedure  but because it means a tumor which was inside my lung has grown to the point it's accessible from my chest.  The procedure involved my laying on a table and getting several CT scans as 3 doctors worked through a dime sized hole near my right shoulder.  The area was thoroughly numbed but I was completely awake during the procedure.  They dug in until the reached the tumor then inserted some device.  I hear 'you'll feel a pinch' then CLICK.  A piece of tumor was clipped from my body.  This was repeated 5 or 6 times and then it was over.

The spot on my chest:

Next was the fluid removal.  The doctors and 1 nurse wheel me to a different room which has an ultrasound.  Similarly they numb a spot on my back at the surface and through to my naval.  The ultrasound is used to identify where the fluid is and they begin working a needle through my back to reach it.  This was neat because I watched the ultrasound as they probed the needle in and around until they reached the sack.  Then I sat there bent over and waited.  It took about 20-30 minutes to drain the 1.3 liters from my check cavity.

I went to recovery and was released after 2 more chest X-rays to show I was not leaking.  We reached the hotel around 8pm.

Today is my first treatment.  More about that later.

Headed to St Louis

It's Wednesday, June 10 at 6am and we are on the road back to Barnes Jewish Hospital in St Louis. The sun is bright as it rises on the eastern horizon, which happens to be the direction we're driving.

In 8ish hours I will be on a table with doctors poking holes in my chest to drain fluid and take samples.  This should be an outpatient procedure so I hope to be in our hotel tonight.  My first treatment in this study is scheduled for tomorrow.  I am excited and grateful for tomorrow.

My sister and her kids are meeting us in St Louis and then we travel together back to Arkanasa.  That should be fun.

My next post will be after the procedure is all probability.  I expect all to go well and to be sore.  Looking up until then.

I am out of hospital

I am out for now.  The pulmonary doctors definitely wanted to drain the fluid from around my lung.  They were planning the procedure but I did not here a date or time yet.  I contacted Georgia (the nurse) St Louis and she consulted with the teams at Washington University and then called me back.  The doctors at Washington University said to NOT do the procedure in Fayetteville.  They want to do everything in St Louis.  I contacted the Fayetteville doctors to relay the information and I was realeased within a couple hours.  :)

I am still very short of breath because of the fluid around my lungs, but I can tolerate that for a few days until I get to St Louis.  My hope is that the removal of the fluid will releve my breathing as much as when they removed the tumor segment.

Here's to hoping.  🍻

I am now at home and ready to rest until Wednesday.

Thank you everyone.

Share if you care 😊😉

The past three weeks

A lot has happened in the past three weeks. After we got the word for my drug trial ending in Houston and we got confirmation of the St. Louis trial beginning we decided to take a vacation. I bought tickets for myself, April, and Terah to fly to Miami.  We spent several days wandering around the touristy section of Miami Beach. For a quick note Miami Beach during memorial day is not a child friendly event. It's full of scantily clad, overly muscular, loud music playing young people meandering up and down Ocean Boulevard. Fun to watch but not a family friendly environment.

We had a great time in Miami. We spent one day on the beach, one day on a catamaran boat ride, and one day shopping and doing miscellaneous. Everyone enjoyed themselves.

My return to Arkansas was tainted by not feeling well.  I felt worse each day and by Friday went to the emergency room at Washingtom Regional Medical Center.  They admitted me with pneumonia and have treated me with antibiotics since then.  Someone from Highland Oncology visited with me each day and monitored my progress.  I improved each day and now it's Monday.  I am 90% better but they want me to stay because they see fluid around my right lung.

I was scene by a pulmonogist this morning and he ordered a new CT scan to see how much fluid there is and more precisely where it is.  I have not heard the results from that but April ask the nurse and was told the pulmonogist was consulting with the pulmonary surgeons.

That's all I know about that.

I am still planning on a drive to St Louis on Wednesday and Thursday.  Hopefully none of this interferes with the St Louis trip.

Back in hospital

I have been in the hospital for a few days with pneumonia.  I feel much better.  More to come.

St Louis results

My visit with Dr Van Tine in St Louis went well.  He was enthusiast about my participation in this study and the wheels are now turning to get me entirely in.  We discussed this study and other possibilities.  The staff was great and the office was efficient.  

This is a small study with less than 100 participants in the nation and only 40 at this facility.  It opened only 2 weeks ago and I was lucky to get in.  It was incredible timing for Highland to call during the tiny window for registering.  Dr Van Tine said a slot was reserved for me when Highland called and this was one of th last slots.  He also spoke of the telephone conversation with Dr Iyre.    Dr Van Time was impressed with Dr Iyre and  said Dr Iyes cared a great about my case.   It is always good to hear that people care.

During my visit I had blood work taken, a fresh CT scan, and a fresh EKG.  It was all in the same building but on different floors.  Barnes Jewish Hospital is affiliated with Washington University School of Medicine.  The campus of building is huge and beautiful.  It is away from downtown and you see it was from several miles away.  I was surprised by the ease of driving to the building which I needed.  We used the valet parking, which was a mild disappointment because if you don't tip they point the AC vents at the drivers face and adjust it to blow on high.  This was not a good surprise.  Not harmful but annoying.  

Back to the treatment.  If my tests are ok I am deemed worthy then I am in.  I hope to know soon.  My next appointment  is June 3rd.  This will include more examination and probably a few (4-5) needle biopsies from my lungs.  The exact method will be determined by a thoracic surgeon.  Dr Van Tine said this is normally a outpatient procedure but could be an overnight stay.  This is for a pre-treatment sample.  Another biopsy is needed every few months.  Treatments for this study are once every 3 weeks.  The treatment is done via IV with nearly the same pre and post procedures as in Houston.  I am excited about driving to St Louis once every 3 weeks as opposed to Houston every week.  That's as much as I know.

What now.  It's time for a real vacation.  I am planning with April and Terah to take a trip next week.  I want a beech with clear water and which accessible to a guy with one leg.  I also want it be somewhere I've not been before but I am limited to the U.S.  I am looking at Florida, Virgin Islands, the Keys, etc.  Much depends of when Tersh can take off.  I am looking forward to this.  I am open to suggestions.

It is Friday and I am nearly home from the drive to St Louis.

Take care, everyone.

I feel it is a good day.

We stayed in Shreveport, LA last night.  It was in a casino/hotel on the river.  The room was nice, the food was good, and the casino was clean.  It was not my preferred style of casino and it was not wheelchair friendly, but was clean and the people were very nice.  Today we finish driving home with a stop in south Arkansas so we can visit family.

The chest X-ray was negative for broken bones.  Dr Iyre said my lungs sound clear, which is good, but I still have the nagging urge to cough.  There are a few possible reasons and I will follow up with my local doctor.

Today includes a stop in Little Rock at the UAMS pathology department.  I will pick my 'slides' from my tumor removal last August.  Apparently it is unusual for a patient to pickup their own slides.  The doctor's nurse told me it wasn't possible. I spoke to the pathology department directly and the person had to check a few things.  The person in pathology called me this morning to say it was ready for pickup.  I guess there are no rules against it.  Good for me.

We left Shreveport about an hour ago.  It was cloudy and gloomy as we drove away from the hotel.  We're currently driving north on highway 79 and the sun is fighting its way through the clouds. The road is clear of traffic and feels like it will be a good day.

I'll end with that.

Houston treatments are done

Monday, May 18, 2015 8:00am

I set in a hospital bed in Houston, Texas waiting for my next treatment.  I have an IV in my arm and my blood is away in the lab.  This time gives me an opportunity to think about the events of last week.   It had ups and downs and turns.

My treatment last week was frustrating.  It all worked out, but it was a long two days.  Read more in last week’s blog (http://aboutdamonsleg.blogspot.com/2015/05/time-moves-slow-slowlt.html).

Later in the week we celebrated Thirsty Thursday with an evening visit to The Rail and Club Frisco in Rogers, Arkansas.  Jeff, Staci and I spend a few hours talking and laughing and being friends.  These nights are refreshing.  The alcohol doesn't play nice with my Lyrica, but I manage it.

Also on Thursday was a series of telephone calls with Barns Jewish Hospital in St Louis, MO.  They have a drug study which has some great possibilities.  

Trial in St Louis, MO: https://clinicaltrials.gov/ct2/show/record/NCT02301039?term=nct02301039&rank=1

The current treatment (at Houston Methodist) shows only minors improvements so we are looking for another.  Everyone involved at Houston Methodist is wonderful and I recommend this facility to anyone fighting cancer.  It has not worked for me, but it may work for the next person.

Last week also held a pancake breakfast.  My friends at work organized a pancake breakfast to raise money for my fight against this cancer.  I will not post the amount raised, because I think it’s in bad taste, but it is enough to make a big difference.   It is humbling to receive such generosity from others.  I consider myself a servant to others so receiving this has me speechless.

11:00am

Dr Iyre visited and we discussed the St Louis study.  He seemed enthusiastic about it and he will call the nurse coordinator with details from this study.  In fact he is canceling today’s treatment so my system can clear of this drug so I can start in St Louis sooner.  He also ordered a fresh chest x-ray, which brings me to the next topic.

I cough a lot.  The doctors manually cleared my lungs a few ago because the tumor intruded on a bronchial tube and blocked more than a quarter of my lung capacity.  Breathing was wonderful after that procedure.  Slow but surely my cough has returned which may or may not be because of the tumor.  Occasionally I cough to the point that I injure myself.   Most recently I pulled or tore something in my right side.  Coughing and sneezing is very painful because it flexes those muscles.  The chest x-ray will reveal if I have broken something.  Hopefully not.

Lastly, April is working on her passport.  I am between studies so it is time to take a vacation.  The original plan was to visit the Passport Agency in Hot Springs but April discovered that there are no appointments available for at least 2 weeks.  Getting a replacement passport from the local post office take the same amount of time so we’re going with that.  We may stop in the Hot Springs area so we can visit with family. 

That is enough for now.  Houston is done.  Hopefully starting in St Louis soon.  No word from Bethesda, MD about their study.  I have a few weeks without treatment so it’s time to take a vacation.

Thank you for reading.  Please comment and let me know if you have questions.

Time moves slow slowly

It's another day and another treatment in Houston.  This morning my start was delayed when my nose began bleeding as we prepared to leave the hotel.  My nose bleeds frequency is staying consistent, but it is still very annoying.  At least it is consistent and manageable.

Nothing has changes in the last week, but  many possible changes are pending.  I have an appointing with Dr Travis (Highland Oncology in Fayetteville, AR) on May 13th and I have an appointment with Dr Iyre (Houston Methodist) on May 18th and I continue to email with NIH in Bethesda, MD. Many possible changes are on the horizon.

As for myself I am growing tired of all of this.  I plan to continue, but it is tiring.  April and I have crossed words more than once about this or around this subject.  Our funds are limited (as with everyone else earth) so we can only afford to do so much.  The rooms are good, but we don't stay in any 5-star hotels.  Money is mostly dedicated to travel and time is almost completely dedicated to treatments so there's not much left for general fun.  Fun for me is being outside.  i.e. gardening, fishing, camping.  Weather and travel have eliminated this, which just adds to my stress since my normal outlets are gone.  Maybe I can start doing some things after the spring stormy season has passed.

April and I did spend this past Friday evening and Saturday in Branson, MO with my parents.  We watched a troop of Chinese acrobats which was nice.  I was tired and I drifted off for a minute, but April nudged me.  We also ate at a place named Whipper Snappers which had a Seafood buffet.  It as all-you-can-eat crab legs and lobster and other stuff.  The crab was good and the service was good and the floor was slippery.  I used the wheel chair.

My dad is with me during this trip to Houston.  We left from Branson and drove to Houston.  Google said it was no took 10.5 hours to drive the distance and it took us 10.5 hours.  We don't wastes time when er travel together.

No treatment today

One more item on the long list of frustrations.  I was not treated today. 

I arrived at the hospital at the normal time which was much to the surprise of Andrea the nurse.  She had no orders for me.  Some logistic confusion caused my names removal from the participants list.

The coordinating nurse Catherine is working to have my name added back to the list but I will not be treated today.  I expect a treatment tomorrow which means we are in Houston for another night.

Back in Houston

Here I am back in Houston.  It's not my favorite place, but it's where I need to be.

I spoke to Dr Iyre late last week.  He believes the treatment is at least helping so I should continue this until something better is found.  It's a little embarrassing because we said our goodbye to a few people and now we're back.  It is what it is.

At this moment I am sore and tired and getting ready for another treatment.  I hope everything is still ready for us at the hospital.

This trip we drove Aprils car to houston.  Last week, while we were in Houston with my truck, we spent $3500 to rebuild the transmission in the car.  This is its maiden voyage and it drove well.

I am thankful for the doctors and the nurses and the hospital and my family.  Yeah.  I am back in Houston.

Movie Time!!!

I am with April and Terah and Patrick seeing the new Avengers movie today! 

I want to thank Amy for this.  The world is full of wonderful people. 

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.

Infusion #4

Monday, March 16.  April and I set in an empty hospital room waiting for my next infusion. It is quiet in the building at 6:30 am.  Nurses slowly arrive for their duties in other areas of the hospital.  The low clop-clop of foot steps echoing through the empty hallway only reminds me of how alone I can feel during all this. This makes me sad.

My nurse, Andrea, arrives at 7am and we begin the process.  Pre-testing then pre-meds them the infusion and then it's time for a nap. The morning is occasionally interrupted by a blood pressure cheek or blood draw or EKG.  Everything goes as expected.
The news of the day is my blood sugar. Last week my fasting blood glucose was 160+.  Today it was 180+.  My belief is this is caused by the drug I am taking. In any case I need to get with my local doctor and get it taken care of.  I tried altering my diet in the past week but it did not help so it looks like I'll need some kind of med. They also said my potassium and phosphorus are low, so I am getting supplements for them.

The rest of the trip is uneventful. We are staying with Denice, April sister, and we plan to to visit with April's step mom Charlotte.  This is the limit of our plans.  We may do something else but it's mainly doctor, doctor, then more doctor.  Thankfully there is no rain today. The past few trips were filled with rain. The forecast say we may see sunshine this week which has me a little excited.  We'll see what happens.

Always a roller coaster.

This trip was as eventful as my trips usually are.  The driving was good, the appointments were easy and the people were wonderful.  However there's always more.

During our trip to Houston there was a substantial snow and ice event in NW Arkansas.  Our house was covered.  As things melted on the roof it began raining into our bedroom and leaking in our sunroom.  AGAIN!  This same thing happened last year and we paid about $5k to replace a section of roof to fix it.  Apparently that did not work.  I contacted the roofing company and they're coming out next week to look at it.  I expect to be replacing the entire roof soon.  Very soon.

As April and I are preparing to leave Houston we take the bags to the truck and find the tailgate wont open.  CRAP!  At some point in the past 3 weeks my bumper was hit hard enough to bend in and deflect the side panel and hose the tailgate!  I don't see any damage to the bumper or quarter panel or tailgate.   Did some with a car made of cotton balls hit me?  I suspect it's the damn crumple zone technology.  It 'absorbed' an otherwise non-eventful impact to save my life and only cause unknown thousands of dollars in damage.  I am upset.  Add to that I do not have time to leave my truck anywhere.  Poop Poop Poop!

We leave for home on Monday and plan to stay one night with my uncle in Oklahoma.  Traffic through Dallas is horrible so we arrive about 10pm.  I am tired and I ache all over, which is not surprising.  The next morning I wake up and feel no better.  I have a 101.5 temp.  Darn.  We're only 2 hours from home so we make a Dr appointment and head that way.  Of course we're blocked because of a crane stuck in the mud (that's another story), but I get to the appointment and get some antibiotics.  Wednesday and Thursday are spent laying down.  Nothing but soup and water.  I feel mostly better on Thursday but now April has it.

Today is Friday, April is sick, I must be in Houston on Monday, and the roofers will be here next week.  The adventure continues.

Second treatment

I am in the hospital bed preparing for my second treatment.  It's fairly informal.  It's much more like a doctors office.  Apparently the clinic which does the study is renting/leasing this hall of the building.  

I don't have any side affects to talk about.  It could cause diarrhea or vomiting, but I've had none of that.  I have noticed a little less appetite but that doesn't stop me from eating.

My second treatment starts in about 45 minutes.  Then I stay for 30 minutes of observation.  Then we start driving home.  That doesn't count the 6-10 vial of blood I must give.

The last 2 weeks in Houston have been good.  We've visited with friends and family.  We rode the ferry in Galveston and we painted at The Paint Pub.  Add the doctor appointments and sleeping and it has been a full two weeks.

My pre-meds include a Benadryl so April may drive when we start home.  I can write more then.  :)

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.

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.