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 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

May 31st - Evernote

May 31, 2012

8:30 am

Dad woke up at 8:30 am and was sleeping on his left side.

His pain level is a 1 or 2 and says it feels like it is getting better, like less pressure in his bad ear.

He says he can hear me a little out of his left ear, can't quite understand me, but can hear me talking.

10:00 am

Dr Mary was the doctor on call today and gave dad his antibiotics IV. She did a great job.

John to be trained tonight at 6:00pm with the Heparin

Dad now has three appointments scheduled

Tuesday, June 5th 11:45, Dr Saiki

Tuesday, June 5th, 1:45 pm, Dr Rabinov

Monday, June 11th, 3:45 pm, Dr Mocha (I am trying to get this date moved up, but so far no luck, his assistant is "supposed" to talk to Dr M and see if he wants to see him earlier, but there are no appointments currently available before June 11th)

(Jim) I know we don't know for sure, but a June 11th appt may mean there is no urgency. Still, I would love a call with the biopsy results, I'm sure you probably agree. (Bill) Jim, I would tend to agree, if I had a faith in the people I talked with. But I believe Dr M has seen the results and probably will tell Dad that they are inconclusive and he wants to run further tests. I believe this is the third biopsy that Dad has had, right?

(Jim) I believe we have the right to ask for the results of his test now, over the phone or a copy of the report via email. Making dad or us wait is pure BS. Having said that, you're probably right.

2:30 pm

Dad got his Ciprodex ear drops and took a nap.

Noticed still a little bleeding in his ear, see picture below. There was just a very slight amount of blood on Dad's pillow over night.

Great news, Bill.