New Med is not so Benign

Journal Entry

Date: June 2, 2013 12:33 PM

Topic: New Med is not so Benign

Dad started taking Tarceva (Erlotinib) about 2 weeks ago.  We were told the side-effects would be less severe than traditional chemo but that he would have to take it for the rest of his life.  Well, within two days he was vomiting and had severe diarrhea.  He was so nauseous he stayed in bed most of the time (accept when in the bathroom) and could not eat or drink anything.  The symptoms subsided a little after a few days but then returned.  This morning June 2nd at around 2:30 AM EDT he had to be taken back to the hospital.  He was vomiting constantly and becoming dehydrated.  He appears to also have an infection as his temperature is rising.

Tarceva extends a lung cancer patients life by an average of only 3.3 months.  With all the side effects it would seem to be 3.3 months of hell.  We are going to talk to Dad’s oncologist and, if Dad agrees, will probably ask to discontinue the treatment.  While I would love any additional time I can have with my father, I don’t want that time to be with him suffering. 

General Update...

Journal Entry

Date: May 16, 2013

Time: 11:33:05 AM EDT

Topic: General Update...

Sorry for not posting any updates for over a month. Dad has not had to go back into the hospital since the end of March and heart wise he has been stable. We have had updates on his cancer and he has started treatment at the Anderson Cancer Center.

Dad’s cancer is in stage 3b. First we were told 3a but further tests showed it to be worse than originally thought.  Dad was advised that radiation could eliminate the cancer but that it would also leave him unable to breathe or eat on his own. His esophagus and airway would be irreparably damaged and his quality of life seriously impacted. The second option was chemo-therapy.  The chemo will not kill the cancer but it should slow it down giving him more time.  Then there was option three.  Dad was tested to see if his cancer was a type that caused cell mutations.  He tested positive.  Now that may sound really bad but in this case it is a mixed blessing as there is a new drug that is 70% effective at treating that type of cancer.  It is taken as a pill once a day and the side effects are much less severe than chemo or radiation.  So… Dad started the treatment this week.

On another note, Jeannie’s Dad has been readmitted to the hospital.  He had to quit taking chemo (for colon cancer) a few months back as it killed off all of his white cells and made him quite ill.  He recovered from that episode and restarted the chemo last month and once again it devastated his immune system.  The family has asked that he not be given chemo any longer.  That prompted the hospital doctors to recommend Hospice care.  That suggestion stunned the family as they have not been told or led to believe that their dad is terminal.  Her family is going to discuss things amongst themselves to see what other options and assistance he can have.  The family was originally told all the cancer had been removed during surgery.  So why he needed chemo and why he continues to get sicker is not clear.

Where's The Lab Report

Journal Entry 

Date:    April 8, 2013 2:55 PM
Topic:    Where's The Lab Report

Back on March 27th Dad’s primary care physician, Dr. Lee, called the lab that did Dad’s initial biopsy and talked directly to the pathologist.  She requested that they retest for asbestos and the pathologist agreed to do it but said the results had to be delivered to the original doctor, Dr. Gowani.

We’ve been calling Dr. Gowani’s office for the last week asking for the results to be sent to Dr. Lee.  Well, turns out that the tests were never done.  After many phone calls to Gowani’s office Jeannie finally got someone to check on it and they did not have the results.  So Jeannie called the lab that was supposed to run the test.  The lab said that they never received the request.  After the lab staff talked to the Pathologist they found out he forgot to enter it into the system after talking to Dr. lee.  He then forgot about it entirely.  Now what if someone’s life depended on it?  Oh wait, it does!  it was a good thing Jeannie was persistent and kept calling. 

A Visit from Number One Son

Journal Entry

Date:    April 7, 2013 8:03 PM
Topic:    A Visit from Number One Son

My eldest brother Lynn and his family came to visit today.  They took Dad out to eat.  (Gee Dad was taken out to eat twice in one weekend!)  From the time dad got up he was acting like he felt better.  He was excited Lynn was coming and it was obvious he was happy.  Something about the first child that a parent always holds as special.  Even if that child is now over 60.  

Birthday Dinner

Journal Entry

Date:    April 6, 2013 8:57 PM
Topic:    Birthday Dinner

Dad’s 87th birthday is on Monday April 8th. As an early celebration we took him out to eat at the Texas Roadhouse this evening. He seemed to enjoy going out and it raised his spirits a little bit. We got him a “Cactus Blossom” (fried onion) as an appetizer and a whole rack of ribs. Yum, Yum! He ate pretty well but still took home most of the ribs. That’s OK, they won’t last around here. Dad, Jr., or I will eat them…

Dad Gets a PET

Journal Entry

Date: April 5, 2013 7:43 PM
Topic: Dad Gets a PET

Dad has been very lethargic this week. We are not sure if it is due to the morphine Dr. Lee has him on or if he is depressed.  Maybe it is a combination of both.  He’s been sleeping most of the time and the expression on his face makes him look very old.  Yeah, I guess he is very old but for most of his life people have guessed him to be much younger.  From how active he usual is you’d think he was in his early 70’s.

Dad had a PET scan run today to determine the extent and stage of the cancer.  The lab gave him a low res copy of the images to take home on CD.  It’s very interesting looking through the segments of his body.  I see spots around his lungs but I’m not sure if that is the cancer or something else.  I just wish I knew what I was looking for.  Guess we just have to wait for the doctor’s report…

Almost Lost It

Journal Entry

Date: April 2, 2013 3:30 PM

Topic: Almost Lost It

Pop is obviously not feeling very good today.  He got up around 11:30 AM and Jeannie fixed breakfast for us.  He went back to bed soon after and is still sleeping.

I made a YouTube vlog yesterday on the way to pick him up from the hospital.  I’ll be posting it to YouTube later today.

I was taking a short break from work just now and I was thinking about The Beatles song “In My Life”.  I started trying to sing it and I got so choked up I almost lost it and started crying.  Damn!  Just thinking about it as I write this I feel that lump coming back into my throat. Why do some songs create such strong emotions?  I better get back to work...

Back Home

Journal Entry

Date: April 1, 2013 11:50 PM

Topic: Back Home

Dad was released from the hospital this afternoon.  It took three hours to get him discharged.  Waiting… waiting… and more waiting.

We got home around 8 PM and almost as soon as we walked through the door Dad began vomiting.  I became very concerned that he had been released too soon.  I feared I would have to turn around and take him back to the ER.  Once he stopped vomiting I checked his heart and it was stable at around 60-70 BPM.  Good!   At least it is not his heart.

I gave him some crackers and ginger ale to help settle his stomach but within 30 minutes he was vomiting it all up again.  He told me he hadn’t had a BM for three days.  Probably due to the morphine he was getting.  He took something for constipation and rested for about an hour.   After the nausea subsided a bit, I brought him some homemade veggie soup in a cup and he was able to keep that down.  He finally started feeling better and got to sleep around 11 PM… 

Visiting Hours

Journal Entry

Date: March 31, 2013 8:02 PM

Topic: Visiting Hours

We went to visit Pop in the hospital today.  He was very groggy and wasn’t looking like he felt very well.  We had dinner with him at the hospital.  Contrary to the jokes about hospital food, Dr. Phillips has pretty good eats.  When you order from the patients room you can get a “guest” tray for only $5.  Not bad at all but still Pop complains about how it tastes…

Before we left this evening Pop was looking a a lot livelier and more alert.  As we were leaving the nurse advised us that his heart was back in “sinus rhythm”.  That’s good news.  Now if they can figure out how to keep it that way.

Here We Go Again

Journal Entry

Date: March 30, 2013 9:47 PM

Topic: Here We Go Again

Jeannie came home for the weekend.  She has been taking care of her dad all week and is exhausted. We both slept late this morning.

I got up around 10 AM and went into the kitchen to make my first cup of the day.  Pop tootled in a couple minutes after me.  As we were talking he mentioned he thought the morphine Dr. Lee put him on was making him dizzy.  My paranoia immediately kicked in.  We’d been down this road several times lately and it always started with Pop feeling dizzy.  I feared it wasn’t euphoria from the morphine making his head spin.  I asked him if he had checked his heart rate this morning.  He hadn’t.  I had given him a little finger style heart monitor after the first trip to the ER and we promptly went to his room to get it.  Yep, his heart rate was going up to over 130 bpm then down to into the 60’s then back up again.  We called his cardiologist, Doctor Din and confirmed we needed to take him to the ER.

We spent all afternoon in the Emergency Room at Dr. P. Phillips Hospital (again).  When the nurse, Zuleima, came in to setup Dad and get his information, I told her that his veins were really hard to hit.  They almost always have to stick him several times before they finally get an IV specialist to come and get the line in.  She told us they had to try at least twice before calling in the IV team.  However, next thing we know a guy comes in with a sonogram and quickly, almost painlessly, finds a vein in Dad’s arm and gets it first try.  No digging around, no pushing the needle back and forth, in and out.  The nurse had decided to go ahead and have a specialist put the IV in saving Dad a lot of extra pain.  Thanks Zuleima! Thanks Alex!

Dad finally was admitted to the hospital and moved to a room at around 7:30 PM.  We stuck around until we talked to the floor doctor and the nurse on duty.  Then we headed over to Jeannie’s mom and dad’s house for a few minutes to get some meds she forgot to bring home.  We finally got back to our house a little before 10 PM.  We are both wiped out.  My head is hurting so bad my eyes feel as if they are going to pop out.  Time for drugs and a bit of zone out time in front of the tube.   Then to bed…

Back from the VA

Journal Entry

Date: March 28, 2013 7:40 PM

Topic: Back from the VA

Dad went to see Dr. Lee today at the local VA clinic.  She said she had started getting things arranged for his cancer treatment.  She has been very good to Dad.  He really likes her. When she found out he had VA appointments for tomorrow she called around and had everything rescheduled for today so he didn’t have to make the trip back over there on Friday.

Dr. Lee also called the Pulmonary Specialist, Dr Gowani (to have the biopsy tested for asbestos). She couldn’t get through. She kept getting the run around on their telephone system and finally hung up.  She called the lab Pathologist directly to order the test.

One really stupid thing is the Pathologist has to send his report to the original doctor, Gowani, and can’t send it directly to Dr. Lee.  This means Gowani gets to charge for “reading” the report again.  CHA-CHING! What a racket!

Some Good News For Once

Journal Entry

Date: March 27, 2013 1:03 PM

Topic: Some Good News For Once

Dad spoke to his primary care physician, Dr. Lee, at the VA this morning.  The VA has a local clinic here that he goes to for most regular checkups.  He was told that the VA would pay for his treatment and Dr. Lee said she would get things arranged for him.  She wants the lab to run tests for asbestos on the original biopsy.  Dad was exposed to, and worked with, asbestos in the Navy and as a civilian during the 40’s and 50’s.  If asbestos is determined to be the cause or an aggravating factor for the cancer, Dad may be able to get some help from the asbestos victims compensation fund.

Dad called the office of the Pulmonary Specialist who did the lung biopsy, Dr. Gowani, to have her request that the lab check his biopsy for asbestos.  The doctor’s staff was not very helpful and told Dad to call the lab himself.  When he did the lab said they had to have orders from Dr. Gowani.  They suggested having Dr. Lee call her directly.

The Verdict

Journal Entry

Date: March 26, 2013 5:57 PM

Topic: The Verdict

The verdict is in…  Dad has lung cancer.  More specifically he has “Adenocarcinoma” (non-small cell carcinoma).  My son, Robert, went with him to the doctor’s office today to find out the results of a lung biopsy.  I can’t say I’m surprised as nothing seems to be going in our favor lately but I was still hoping for the best.  I can tell Dad is worried.  It was all I could do to choke back the tears and not allow myself to start crying.  There will be plenty of time for that later. 

I pulled up some information from the National Cancer Institute on “non-small cell carcinoma”.  It doesn’t look good…  Having to choke back those tears again...

Prologue

Journal Entry

Date: March 26, 2013 5:25 PM

Topic: Prologue

My name is Rob.  Events of late have prompted me to begin keeping a journal so I can track my thoughts as well as have a timeline of what is and has been happening.  Everyone has good times and bad times but since August of 2012 that normal ebb and flow for our family has moved and stayed towards the bad. 

This journal is about my Dad.  However another variable in this ebb and flow has been my wife Jeannie’s father Danilo.  He had surgery to remove cancer from his intestines in November.  Since then he has been unable to walk or care for himself.  He has also been in and out of the hospital and back and forth to different doctors.  Another recent event has been Jeannie’s grandmother dying this week.  Her mother had to make a rushed trip up to NY for the funeral on 3/25.  Jeannie is staying with her dad to look after him while her mom is gone.

I guess it had been building for a while but it seems to have started to turn bad with my Dad Jerman (Bud).  Dad is an 86 year old WWII Navy vet.  For an octogenarian he is normally very active and was in reasonably good health for his age.  His doctors at the VA advised us last year that he needed a stent in his right carotid artery.  Tests were showing the artery was 80% to 90% blocked and we were told that it would lead to an ever increasing risk of stroke if it wasn’t dealt with.  The surgery is typically done on an out patient basis and the closest VA hospital to us is in Tampa, about 100 miles away.

So, in August 2012 with the surgery scheduled we drove to Tampa. The VA had Dad come in the day before the surgery and ran a series of pre-op tests on him.  The VA staff had concerns over Dad’s Atrial Fibrillation and postponed the stent surgery. They scheduled him to see a cardiologist in Orlando for further tests.

After seeing the cardiologist, Dad was scheduled to have an Angiogram to check his heart.  In November we took him back to Tampa for the procedure.  The results of that test were good and he was rescheduled for the stent surgery.

In December we once again returned to the Tampa VA and this time the stent surgery was performed.  In recovery Dad’s heart rate was very low and instead of releasing him that night they kept him overnight for observation.

About three days after we got Dad home from the surgery his heart rate became very erratic and he became dizzy and confused.  Since the VA is over 100 miles away he was rushed to one of the local hospitals, Dr. P. Phillips Hospital (formerly Sand Lake).

Now here is where I start to get fuzzy and the timeline begins to blur… It is now 3 months later and since December Dad has been in and out of the local hospital so many times I’ve honestly lost track of exactly when, and how many times he had to go to the local ER.  The myriad episodes of his heart beating erratically combined with seemingly never ending trips back and forth to the local VA clinic or the private Doctors for consultations and tests has made my head swim.  I want to mention here that the VA refuses to pay the private Doctors and hospital charges saying it isn’t covered.  Medicare is going to pickup most of the bills but the remaining amounts are beginning to add up.

There is one thing I remember clearly and it is why I started this journal.  During his last hospital stay from earlier this month, the doctors became concerned with dark spots on the x-Rays of his chest.  They performed a biopsy of his right lung before releasing him this time.  We got the results today…