Sunday, February 27, 2011

Sunday February 27

On Thursday, Heidi and I spent the entire day at the Cleveland Clinic.  We had a 9:00 am appt with Dr Cristina Rodriquez my new Oncologist.  She explained that this cancer is very rare.  It is the 9th likely cancer for a male like me to get.  They do not know how to screen for it and that it usually is not detected until it has spread.  She wishes me to see their surgeon whom specializes just in Esophageal Cancer surgery, Dr. Thomas Rice.  I have appt. with him on March 7.  She also ordered an EGD (Scope) with ultrasound to revisit my esophagus and gather more information.  The plan is to start radiation treatments on March 7 and be admitted to the Cleveland Clinic at that time for 96 hours to administer Chemotherapy.  Using one drug that I have been getting and changing the second drug.  I would be admitted on weeks 1 and 4 of the radiation treatment process which will take 6 weeks (28-33 treatments), Monday -Friday daily.

Then we had appt with radiation department which first formed a special bed mattress (vacuum splint) for me to lay in each time I go.  This puts my body in exact same position each time.  Then they fitted me for this respirator type device that I breath with.  The machine will hold my breath as I am treated to keep the organs from moving and try to minimize damage to lungs and heart.  They also performed (3) CT scans of the area for their "modeling" of my treatment.

I also had blood work completed in the lab.

Then we had appt for a PET Scan.  This is the scan that takes up to 2 hours that detects where the cancer is in your body.  They will be able to compare to my original PET scan done in December.  I took these scans to them on the first day.  We were at the Clinic from 9 am - 4:30 pm.  The PET scan was last item of day which i had to fast for, so I was starving!

Friday morning in the snowstorm, I had a 8:00 am appt with a Pension Board Doctor in Akron.  I let my house at 6:45 am for what normally was a 15 minute commute and I arrived there at 7:55 am.  I-76 was closed due to accidents.  The doctor was 1.5 hours late for my appt and arrived at office at 9:30 am.  I had to wait because with my schedule I have no idea when I could go again.  I spent about 45 minutes with him and explained my illness.  He was certainly no expert in the area.  He stated he would certify me as disabled but would have to determine a percentage based upon national criteria and send a report to Pension Board within 2 weeks.  The Pension Board will then have to determine if job related or not and decide on percentage.  I have another Pension Board assessment on March 4 in Beechwood.  This is some type of vocational director that will determine what kind of work I can or can't do.

Today, still have that draining headache and extreme fatigue.  Can't seem to whip that.  Also still have diarrhea which i discussed with Oncologist and she stated will have to live with that.  The new chemo drug that I will get will make that worse.  I still have to take daily naps of 2-3 hours just to make it through the day.  I also can't seem to get warm.

I am so inspired by the number of cards, emails, txt messages, gifts, etc. that I receive each week!  It really helps to lift your spirits when someone just tells you that they are thinking of you!  Thanks for that.  Also, Brock Murphy set up a bank account for me at Home Savings Bank located at 142 N. Water Street Kent Ohio 44240 for anyone who wishes to donate to help us with medical and related expenses.  The account is called "Don Beckett, Be Well Account".  Brock notice my stress about the out of pocket expenses and thought that this would help me.  Some families have already donated as I get a receipt mailed to me for each donation.  Thank you for this.  These type of medical bills can just financially ruin a family. 

Most importantly, please pray for Heidi and myself!  Please pray for the physicians wisdom and that the Lord would guide them to the correct treatment regiments.  Thank you for this!

Wednesday, February 23, 2011

Wednesday February 23

Over the weekend, did fairly well.  Mostly just energy level problems.  However, on Monday night/Tuesday morning, I had another onset of severe diarrhea.  I immediately began taking Lomotil (anti-diarrhea prescription) to get a handle on it.  It took until this morning to get this under control.  Fortunately, this time I was able to get a handle on it before I got dehydrated.  I am not sure what is setting this off unless it is a side effect of chemo drugs that have delayed effects.  So today, I am drinking, drinking, drinking!

Tomorrow (Thursday), Heidi and I will be at the Cleveland Clinic the entire day.  I have appointments at 9:00 a.m, 10:45 am., 11:45 am., 2:30 pm and 3:30 pm with different people and units.  The set it up all in one day for me since we have to travel so far.  At this point, the plan is to start radiation treatments and new chemo regiment on Monday March 7.  I will learn more about all this tomorrow.

Friday, February 18, 2011

Friday February 18

This past Monday I had round 3 of Chemotherapy.  It really "kicked my butt" (please excuse the expression)!  In addition to the Chemo, I had a severe diarrhea problem going on.  Finally, got that all resolved on Wednesday.  The Chemo this time made me very nauseated with vomiting and I had to go into to Doctor office everyday this week to get I.V. nausea meds, fluids, magnesium and whatever else they could think of.  The nurses there hounded me by phone until I came in each day and got treated.  They were concerned I would end up in the hospital.  Got one point of good news this week, a blood test which determines the "tumor tracer" was originally "273" in December.  My blood test of this criteria last week showed it had dropped to "107" which is more than double with chemotherapy.  The nurse said this is good news and and encouraging.

Today, feeling fairly decent and able to eat.  I have about 50% energy level.  No major nausea or vomiting.

Heidi and I went to Cleveland Clinic today and spent most of the day.  Akron General Medical Center said they were unable to to do my radiation treatments safely and they recommended me to the Cleveland Clinic and set up appointment for me.  The Radiation Onconlogist said that my radiation treatment is a little more difficult because of the size of the field but said they can definetly do my treatment.  They stated they would exceed some limits that others would not go to treat the cancer.  They said, we really don't have much choice if we are going to cure you.  The Clinic doctors made it very clear that Chemotherapy alone would never cure my cancer.  They also said that surgery alone could not cure my cancer.  They said that it would require Chemotherapy, Radiation and possibly surgery to cure my cancer.  They said this process would take up to a year.  They also said it might require return trips afterwards to to do radiation treatments from inside my esophagus.  The staff at the Cleveland Clinic were all extremely friendly, knowledgeable and through.  Heidi and I have made a decision to switch our treatment regiment to the Cleveland Clinic with a "team concept" there.  This means, I would have a new Oncologist, new Radiation Oncologist and possibly a new surgeon.  At this time, they are scheduling me for a new round of PET Scans, CT Scans, etc that they will develop my radiation model from.  This should get done next week.  Also, the same day I will meet with new Oncologist there.  They typically do the chemotherapy as a "in patient" treatment for approx. 3 days.  Also, the radiation would be done Monday - Friday everyday for 6 weeks or longer.  This means driving to the Clinic everyday.  We are shooting to start radiation on approx. March 7.  I should know more after next week.   


Saturday, February 12, 2011

Saturday February 12

Sorry for the delay in updating the blog.  It was a very bad week for Heidi and I.  It started on Monday when my white count was very low and started shots of Luekine to increase the bone marrow activity of producing white blood cells.  On Monday afternoon I started severe diarrhea that was the worst I have ever had.  It continued through Monday night, Tuesday, Tuesday night and finally on Wednesday I asked the nurses at Dr. Marquinez's office for help.  I had not urinated in 36 hours or more (kidney's had shut down) and I actually passed out on Tuesday night.  The nurses immediately began giving me I.V. Fluids, Magnesium and Potassium.  They would not let me leave until I started peeing again!  Finally, after 2 liters I did go to the bathroom and I did go home.  The nurses insisted that I return on Thursday and Friday and get another round of the same of more Magnesium, Potassium and Fluids.  I have done this.  I still have not gotten rid of the diarrhea but it has slowed.  Everything that I eat causes some abdominal cramping and diarrhea.  Dr. Marquinez has ordered some test and I see him on Monday.

The other bad thing that happened was that Dr. Blessing Godwin (Radiation Oncologist) called me on Thursday morning to tell me that she is refusing to do radiation treatments on me which were to start this Monday morning.  She said every model that she crafted for the radiation was going to cause too much damage to my lungs and heart.  It seems that I have a very large field to shoot and that my stomach lies in my left chest more so than the normal person.  Since they have to shoot my stomach as well, it will cause even more radiation to my left lung.  She said she can not recommend treatment and was canceling my appointments.  She offered for me to get a second opinion at the Cleveland Clinic and offered to set this up.  I told her I would discuss this with Dr. Marquinez and Dr. White further to decide which direction to go.  I later called her back and asked her to set up appointment at Cleveland Clinic since it would hurt nothing to get a second opinion.  I see them on Friday February 18th at 11:00 a.m.  I wasn't crazy about the idea of the radiation treatment to begin with, but then I am also concerned that this might not be a treatment option too.

So, I spent everyday this week at Dr. Marquinez's office/clinic getting shots and fluids.  I did not get anything else accomplished this week.  Dr. Marquinez called me last night to discuss our plan for this upcoming week.  He said since the chemotherapy had proven to be working, he wants to do the same strong dose as round 1 and round 2.  We are going to do this round 3 treatment on Monday morning.  He also agreed to seek opinion of Cleveland Clinic and then we can proceed further after we get that information which will take a couple of weeks to determine.  

Monday, February 7, 2011

Monday February 7 - White Count Update

Last week on Wednesday, my white count was down to 2.1.  This increases your chance for infection and the body has no way to fight it off.  I went in this morning for a recheck of the blood work.  My white count dropped to 1.9.  It did not get better as hoped for.  The nurse called Dr. Marquinez right away and he decided to start me on shots of Leukine.  This medication is used to stimulate the bone marrow to produce more white blood cells.  I will have to go in to get shots daily.  He did not want to wait another week and it be low again and delay my next round of chemo.  Radiation also starts on Monday Feb 14.  Dr. Marquinez's nurse also called BioScript again because we are having trouble getting them to ship me my oral chemo medication.  She explained to them that I must start it next Monday.  She said they did not seem very helpful.  If I don't see it by Wednesday of this week, I will pay a visit to our HR Manager and she if she can offer any assistance. 

The nurse also explained some side effects of the oral chemo that I will be taking.  It will cause diarrhea and will also cause drying of skin on hands and feet.  Lots of lotion will be required on those areas.  She said the skin will dry and crack open.  However, she said my biggest complications with round 3 will be from the repeated radiation treatments.  She said that swelling and pain of the esophagus may make it necessary to get a feeding tube inserted.  I hope to be able to eat enough to prevent this.  Will also get some burns on my chest. 

Heidi and really appreciate all the prayers, emails, txt messages, cards, dinners, etc!!!!  You folks have given us so much support!  We are blessed!  I must limit my visitors next few days to people that are not sick at all or no one in their family is sick at all.  Thanks for your understanding!  I do not wish to spend any days in the hospital!

Saturday, February 5, 2011

Saturday February 5

Yesterday felt better.  I run a few errands in the afternoon and then relaxed in the evening.  Sleeping a little bit better also.  Today feeling pretty good.  Eating well.  Focusing on trying to drink more water this week.  I am filling a 2- liter drink bottle at beginning of day and my goal is to finish 1 per day. 

Heidi is feeling much better also.  Ryan still coughing but does not seem to ill. 

Visitors welcome again.  

Wednesday, February 2, 2011

Wednesday February 2

Blood work today not so good.  White count 2.1.  No visitors today.  Back in bed not feeling so good.  Thanks!

Tuesday, February 1, 2011

Tuesday February 1

It was a very long weekend being sick Friday, Saturday and Sunday.  I did stay on nausea medicine the entire weekend.  I have 3 kinds of nausea medicince, Compazine, Zofran and Ativan.  I can take all 3 at the same time since they work differently.  I have to tell you though, I was still very nauseated.  I did not throw up as much this round.  I also did not note any fevers this round!

My hair is gone and beard hardly grows anymore.  I do want to clarify for everyone that I am swallowing fine at this time.  This may change during radiation treatments, but at this time I can eat anything.

Dr. Marquinez's nurse called me yesterday.  She was spending her time acquiring medications for me through my mail order prescription company so I would not have to do it.  With round 3, we are going to be doing radiaiton treatments everyday Monday - Friday.  I will also go for weekly I.V. Chemotherapy and will also take an oral Chemotherapy medication.  This round 3 will last 5-6 weeks (25-28) treatments.  

Sunday I was feeling about 15% better than Saturday, Monday about 35% better than Saturday and today about 50% better than Saturday.  Still no taste buds but that could improve next couple of days.  Still the most refreshing thing to eat is oranges. 

I will get blood work done tomorrow and see Dr. Marquinez for my weekly visit.  Blood work is done weekly keeping an eye on blood counts.   Visitors are welcome once again!

Heidi and Ryan were both sick over the weekend with bad colds and cough.  Heidi seems to be on the mend but Ryan still has significant cough.

Today (Tuesday Feb 1) is Heidi's Birthday!  Everyone please send her lots of Birthday Wishes!!!!