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.