August 13th

Woke Dad up at 6:45 to give him his blood pressure meds. I was considering trying just a half a tab of HC, but when I asked him about his pain he said it was a little higher than last night. I gave him a full tablet. It had been 9 hours since his last one. The dose on the bottle is 2 every 4-6 hours so I think we're doing well in that regard. He offered, before I could ask, that he slept well. I gave him the outlook on the day, put some eye drops in, and told him I would be back at 7:30am to get ready for Ramon.

August 12th

7am:  Dad slept well.  He does that a lot.  Bill and Debbie suggested we try and forego the Lexapro on top of the Oxy to see if he can have a little more active day.  Last night he did not get a Lexapro.  On hindsight I wish I would have given him half.  Any thoughts on giving him half today, or forgoing it and see how he does?

Last week when we saw Dr. Trang and Trevor on the same day, Dr. Trang prescribed hydrocodone and then a few hours later Trevor prescribed the Oxy.  The Oxy makes him really sleepy, so this morning his pain level was about a two, I thought I would try one of the hydrocodone and see how he does.  It would be great if the Zosyn and Daptomyacin start kicking in and we can back off on the pain meds a little. We have about a two week window before he starts building a tolerance to them, so the lowest dose that keeps him comfortable is the best.  His bathroom visits last night were minimal.

Up at 9am making oatmeal (himself).  Ate well.  Says he is feeling a little better. The pain level is not too bad. The hydrocodone (I'll call it HC from now on) was prescribed at two every 4-6 hours. I gave him one at 6:30 and another after breakfast around 9:45 and it seems to alleviate the pain without making him too drowsy. During five straight he was finding the pegs okay but he said the numbers were getting smaller. Fell asleep around 10 am.

Slept til 12:30,administered both antibiotics, he had a baby muffin, and now he is in the shower.  He said his pain level is not too bad.  As soon as he gets a little more food in him, I'll give him another HC.

We put the glove over the PICC line.  He asked me to take off the Life Alert so he could wash is arm.  I did and set it on the shelf of the shower and told if he needed me just push the button.  It scared the crap out of me when it went off.  The glove had leaked and he needed help getting it off.   It worked well.  I canceled it before the operator came on.

Unfortunately he did not eat much for lunch, just that little muffin and some juice.  I gave him the HC anyway. It had been five hours since the last one.  He said it hurt a little bit and he wanted to go back to bed. It's 2:45 and he is sleeping now.

Ranae brought over a light Great Castle meal (veggie fried rice and Chinese chicken salad). Dad had about half to 3/4 plate of food, a cookie and fortune cookie. Gave tha Zosyn at 6:20. We are watching the closing ceremonies and he says he only has a little pain, level 2. His las HC was at 2:45.

Dad got out of his chair around 9:30 and made himself some hot chocolate and had a muffin. He had had a cookie about 20 minutes before. He took one more HC. I hesitated giving this to him. It had been 7 hours since the last one and his pain level was at a two. Maybe tomorrow we should consider breaking the tablets in half. Catie called and he had a good conversation with her. He held the phone himself and was able to understand her fine. He did mention that watching tv was getting a bit tougher. His eyesight is not real good. Getting ready to administer the midnight dose of Zosyn.

August 7th

We had two appt. yesterday.  The first was with Dr. Trang the ear specialist.  Because of the nerve damage (or Bells Palsey) he was able to confirm the diagnosis of skull based osteomyelitis (SBO).  Essentially this is a really bad infection in the boney areas around Dad’s ear.  He made an appt. to see another infectious disease specialist, a one Dr. Hydari (sp?), who he thought could do a better job of picking out the antibiotics.  Because of this infection we have to forego anymore chemo treatments for at least 4 weeks.  The antibiotic treatment will likely be about 8 weeks.

Dad was very depressed with this news and it was tough to see his reaction.  He didn’t even want to go to the afternoon appt. with Dr. Nguyen.  Bill, Tom and I kept that appt and had a good chat with Dr. Nguyen.  He led us to believe that the chemo is a corrective treatment not a palliative one.  In other words, we are not pursuing the chemo just to make Dad more comfortable.  There is a good chance for long-term recovery from this type of lymphoma.

Tom and Bill take Dad to see Dr. Nichols today.  They will look into draining fluid from not only Dad’s thoracic cavity but abdominal cavity as well.  We want to know if the fluid in Dad’s abdomen is having an effect on his appetite and digestion.

Dr. Trang gave us a prescription for a stronger pain killer and Dr. Nguyen gave us a liquid to stimulate Dad’s appetite.

Here are some of my thoughts (hope you don’t mind):

If you had your choices of diseases, the lymphoma might be near the top.  As cancers go, it doesn’t sound too bad.  On the other hand, bacterial infection that cause skull based osteomyelitis?  Well, that would be at the very bottom of my list.  It’s hard to get and hard to get rid of.  I’m sure like many of you, when told Dad had cancer and an ear infection, our first thought would have been that the cancer was more troubling.  This ear infection is nasty and now it has halted the chemo.  The chemo inhibits his immune system for three weeks.  After that, according Dr. Nguyen, it bounces back.  The bacterial infection has just retreated farther and deeper into his body making it much more difficult to attack.  We can’t stop the treatment for the ear.  It will cause unbearable amounts of pain as we have already seen in just a short time.  To me that path is clear.  Dr. Nguyen will tell us when he’s cleared for chemo again and asked that we give the antibiotic treatment two weeks before we do another assessment.

Best-cased scenario:  Dad responds to the new antibiotic treatments well enough for us to get three or four rounds of chemo, the lymphoma retreats, and then we are just fighting the war on one front – the ear.

July 23rd

Dave from Right At Home, home services came by.  They look like a fine organization and can be available to help Dad should he need it.  I got the feeling Tom would like to have them come by twice a week and just stay with Dad (or do light services) or play 5 straight, which I think would be nice, but I doubt Dad saw the value in the 3 hour minimum ($60) charge.  Still, he let us set up the account and someone is a phone call away.  They are available 24/7 and can drive him to an event like Sirs should one of us not be able to make it.  And, if we are able to get him to use it a couple of times he may like the companionship and call they for the 5 straight session.

Tom, said Dad’s energy level and demeanor was much better today than yesterday.  I think the bounce back effects of the medications may be wearing off.  It was hard for me to get a bead on his attitude as I think he was a bit defensive/reserved at having to deal with someone who wanted to offer him care he is not convinced he needs.  He took it all in and at least we have him thinking about.  He is still a little wobbly walking around.  Dave did a safety check of the house and said Dad’s house looks good.  He recommended a hold on bar in the shower and to remove the scale in the bathroom so there is more room in there.  He also recommended we put Dad’s Advanced Directive on the refrigerator door.  Did you know emergency personnel will look for it there or inside the refrigerator in a labeled container?

We need to invent a file cabinet and handbook.  We could make a fortune.  We could have files for medical, home health, legal and then a handbook of useful information people need going through this process….maybe an app….

Becky is coming over for a rematch tomorrow morning.

July 18th

Tom, Dad and I saw Dr. Nguyen this morning at 9am.

 The doctor said he had a little fluid on his right side, but not enough to warrant a drainage.  He said he believes the body will heal that problem on its own, however we should watch it.

He went through all the drugs he's on and removed the Furosemide and lowered the dose of the Allopurinol and Sodium Bicarb.  See the attached sheet for more details on his medications.

He said the prednisone is on a cycle, 1 week on, 2 weeks off, following each chemo treatment.  He said dad should have more energy when on the prednisone and may have difficulty sleeping.  2-3 days after his last dosage, which will be tonight, Dad should want to sleep more at night, like 10 to 12 hours.  This is normal and to be expected.  However, after 12 hours, it is best if he gets up and around.

Tom asked the doctor if someone should stay with dad now, or around the chemo treatments.  He turned to Dad and ask him if he knew how to use a phone, in an up-beat, non-sarcastic tone, and dad said yes.  The Dr. then turned to us and said, I see no reason why he can't continue to live alone if that is what he wants. Tom asked if he could drive while on these medications and he replied yes.  At Costco, while we were waiting for his perscription, I mentioned I would be happy to stay through the weekend and that both Cate and Billy said they would be more than happy to come back down as well. He smiled and said he would be fine, and got a little teared up.  He knows we love him.

Note: His next office visit is 8-1-12 @ 3:40pm, he will likely get his next chemo treatment the following day.  He will be back on the prednisone and should be fine for traveling down to San Diego.

We're headed to Dr. Nichols at 2:45pm today.

...Jim

Afternoon:

Trevor at Dr. Nichols was who we saw.  He came in prepared, had read all the previous notes and was well informed.

Key points:

1) He ordered the blood work and cc: all the doctors.  They took Dad's blood while we were there.

2) He doesn't feel they should have taken him off the Furosemide 40mg. This is for swelling, which Dad showed a little of in his legs.  As a compromise, Dad purchased some compression knee-high socks for $40 that he should wear when around the house. He should also use a pillow when in his chair to elevate his legs.  Therefore, I did not discard his Furosemide, just in case they decide to put him back on it. They're good until Feb 2013.

3) He made an appoint for dad to follow-up with Dr. Aziz, his Pulmonologists. Note the appointment is for 7/25/12 @ 1pm. That was the only time they had available.  The goal is for Dr. Aziz to monitor Dad's breathing and to establish a relationship with this Dr. on all issues related to his lungs.

4) Trevor said that Dr. Nguyen is the captain of the ship, with Dr. Aziz, Dr. Saiki & Rabinov as running backs.  He said he didn't see any reason to make Dad to continue follow-ups and asked to see him again in 3 months.  Note, Dad's next appt with Dr. Nichols is 10/17/12 @ 3:45pm.  He said if we need him, just call and they'll get dad right in.

5) Trevor said he thought Dad's lungs sounded great, just a small amount of fluid on his right side.  He checked his ear also and said it was looking great.

I think it's good we have a follow-up appt with Dr. Aziz.  As the Prednisone leaves his system over the next 2-3 days, if he has trouble breathing we have a follow-up with a lung doctor next Wednesday.

Dad's spirits are good.  He's tired, probably from beating me at 5-straight.  Becky called, she coming over tomorrow to get a few tips from the master before her 5-straight arrives from Amazon.

His medications are becoming a bit tricky. I'll restock his pill case after dinner, he'll need help restocking it before it runs out a week from tomorrow.

Let me know if I missed anything.  Whenever I wake-up tomorrow, I'll be heading back to Bend.

Love,

...Jim

July 11th

Just left Dad.  He had a chest xray early in the morning.  No doctor showed up between 7:30 and 9:30.  His vitals, particularly his O2 levels, were better than yesterday morning (91% yesterday vs 95% today).  We walked around the floor and he had a nice pace going.  When we got back, breakfast was waiting – scrambled eggs and sausage.  He ate most of it.

Tom’s plan for today is to walk over to Dr. Nichols office and see if he can get a consult with Trevor the PA (one sharp man).  Tom feels we need someone to help coordinate all the various hospital doctors.  If nothing else we hope he can give us a holistic assessment of Dad’s condition.  After that Tom will walk over to Dr. Rose and see what the progress is on Dad’s ear.  Dad said it didn’t hurt this morning.

In assessing his demeanor, I believe he knows the fluid came back to his lungs too quickly and that has him a bit depressed.  He also knows his ear needs to be fixed and he wants to have more energy.  He is hoping the doctors are doing something about those things, but I got the feeling he’s losing a bit of confidence in their ability to improve his situation.  Dad’s emotions do fluctuate through the day (as I’m sure all of ours would).  We had a nice visit and he was conversational.  He has an amazing ability to be of good cheer….

July 7th

Had lunch with Dad today and played a little 5 straight.  He’s doing okay although his ear is starting up again and that really pisses him off.  He expressed concern over how simple the “simple” procedure he has upcoming (As in “I wonder what they call simple?”).  He ate okay and has plenty of food.  Tom took him over some Fresh & Easy and he says one of those meals will last all day, but he is drinking Insure and I think that has a lot of calories in it too.  He was still a little short of breath moving around the kitchen preparing lunch and he even mentioned that to me.  He enjoyed the tennis match and is looking forward to the Men’s final tomorrow.

June 27th

From: Jim Harrer
Sent: Wednesday, June 27, 2012 11:58 AM
To: John Harrer ; cate praggastis ; Tom Harrer ; Bill Harrer
Subject: Dad's update

Dad's spirits are good. He got up and went and had coffee with his
peeps. Neda, Al, Frank were happy to see him.

Changed his PICC dressing today. His vitals were:

Temp 98.4
BP 142/68
Pulse 77

Starting today, we're going to keep a log of each time he feels he has
a breathing issue. So far, none this morning.

...Jim

June 27th

Dad's mental state is excellent.  He got caught up on his bills and cleaning his desk. He wanted to build a spreadsheet, so I helped him do that.

In addition to John's great email update yesterday while we went to Costco, I want to add that Dr. Rose also said the culture she took last week came back negative and his ear was now completely clear. Non of last week's puss returned.

He is having some intermittent breathing issues.  It reminds me of an asthma attack.  He could be sitting in his chair and out of know where, he starts breathing heavy.

I working with Debbie's cousin Dean who is an MD and used to work at the Heart Hospital to see if we get in to see a pulmonologists or other specialist.  Dad feels strongly that if I take him to see Dr.

Nickols that he's going to treat everything BUT the breathing. So I'm working this other angle. If I come up empty, Dad has agreed to go to Dr. Nickols Thursday or Friday for a check up. We agreed on that this afternoon, so that is the latest update.

...Jim

June 20th

Greetings all!! So, we just returned from Dr. Rabinov's office.. she said dad had a stubborn abscess  ( a pus pocket was her medical term) ... she lanced it and pus came out (yuk!).  It bled, but Dad said it didn't hurt. Because of the abscess, she wants to keep him on the anti-biotics for at least another round... She took a tissue sample and sent it out for a culture and will have the results when he goes for his visit next WED June 27th at 4:15 pm.  

She suspects this abscess may be the original culprit of the infection.

As for blood results:  and in a quick comparison to the results from last week:

WBC 5.6 - down a little, but still in the normal range

RBC 3.11  - up a bit.. but still low

Hemoglobin 9.9  down a smidgen and still low

Hematocrit 30.1  down an even smaller smidgen (30.2 last time)  but still low

 

I have scanned the full results pages and am including them here.  

Dad was bummed, but okay.. knowing he had to have the picc line in anyway.. And I told him, Dr. Rose indicated that if the infection is completely clear when she sees him next week, she will likely only recommend the picc line stay in for another week, so I relayed that to Dad, and he felt mubh better... I told him I would pass the info on to Jim, so he could remind Dr. Rose next week at their next visit.... ;-)

June 13th

Hi Everyone,

Well, I have some good news, Dad’s ear is doing much, much better.  Dr Rose looked at it today and said most of the swelling is gone, there is just one area that was swollen, and she suspects was the cause of the whole problem.  She did break the swollen mass so it would drain.  It is painful for Dad right now, but hopefully by morning most of the pain will be gone.  Since Dad still has some infection she wanted to keep Dad on the antibiotics one more week, but we feel we might be able to discontinue the injections in about 10 days or so.  I did ask when Dad would be able to resume wearing a hearing aid in the left ear and she felt he would be able to when he completed the antibiotics.

I asked about taking another culture to ensure we are fighting the right fight and she did not feel it was necessary, nor to include any oral antibiotics.  She wanted to stay on the course of action that appears now to be working.

So as it stands right now, he will probably be on antibiotics for another 7 days, which would take him through Friday, June 22nd.  The nurse that put in the PICC line said they typically like to leave it in a couple of weeks after they have completed all antibiotics just in case it is needed.  If that is what Dr Rose wants, that would mean he would have the PICC line in until early July, but I did not ask her that today, so it might be good if Catie can ask at his next visit next Wednesday @ 3:00, assuming all goes as planned.

Dad’s pain level this morning was a zero, the first time in a long time he was pain free.  By lunch though, he said his ear felt a little swollen and that his pain level was a 0.5.

On a side note, Dad is feeling better and better.  We went for a walk this morning and then took a shower/nap while I went for a bike ride.  When I got back he said he was going to put his feet up while I took my shower and when I came looking for him I found him in the living room with his feet up on a chair and lying on the carpet doing exercises.  He has a strong will to get back a little of what he lost in energy and stamina.  I asked him if he wants to go to Grant’s game this weekend with Tom and Mary and he said yes without hesitation.  He also wanted to go to Sirs on Monday and I am working with John to see if we can make it happen.  He changed his mind when we started talking about how he was going to get there and doesn’t want to inconvenience anyone.

He is a joy to be around, is joking around a lot and eager to do things, all great signs, but he will need help until we get him off the PICC line and antibiotics, in my opinion.

That is about it for now, he is looking forward to seeing Catie and Lee next week and having dinner with John and Ranae tomorrow night.

I am including the last two weeks lab results that I got from the Home Health Care Nurse for your records.

Love to all,

Bill