July 31 Update

On Tue, Jul 31, 2012 at 3:36 PM, cate praggastis  wrote:

Okay... I will see if I can fill all that went on today... so far..

First off, when I got here yesterday (Monday), both Tom and John had told me about the droop on Dad's face. John had done some research and suspected Bell's Palsy. Today, specifically this morning, when dad woke up.. he was distraught.. his speech was slurred and his droop was very pronounced. He said.. "I think I have had a stroke". I said okay, called John .. who called Tom.. I got some food in Dad's belly while they were talking.. and then I called Dr. Nichols and took Dad there. We saw Trevor, the PA (smart guy). He suspected Bell's Palsy right away because of the multiple involvement of Dad's eyes and mouth. We have an MRI at 4 pm to rule out stroke.

Trevor had blood drawn to find out if Dad has a virus. Since he has a history of herpes (cold sores), it is suspected that the virus is acute and causing the Bell's. We see Dr. Nichols again tomorrow at 10.30 am for the results. In the meantime, he (Trevor) put dad on Prednesone and Valtrex, which would help with the virus and eventually work on the Bell's Palsy.

In addition, because Dad cannot close his left eye.. Trevor ordered Lacri-Lube Eye Ointment. There is concern that he MUST lubricate the eye regularly, to prevent blindness.. since he cannot blink at all. He has to sleep with his eye taped closed. I worry this might offset his balance a bit.

Dad cannot chew on his left side. He ate eggs and a bit of cottage cheese last night, and some watermelon.. and had 1 egg this morning. He had some Ensure this afternoon.

We then went to see Nguyen as well this afternoon. Dr. Nguyen has a good manner with dad. He was concerned about the Bell's and the virus.. so he has suspended any treatment of CHEMO until the results are confirmed and dad is feeling better. He does NOT want Dad taking the Augmentan that Dr. Rose prescribed. He thinks it is playing havoc on his stomach and not working on the ear infection, which is likely in the mastoid bone.

Which brings me to Dr. Trang (the ear surgeon). Dad has an appointment with Dr. Trang on Tuesday, Aug. 7th at 10:30 in the morning. (The office just called to confirm that time, Tom - so whatever you have from Dr. Rose is not current). Dr. Nguyen will confer with Dr. Trang AND Dr. Nichols office on the best road to travel. (stay to the right of the building, go around the back side and enter through the door that says "Surgery Center")

Dr. Nguyen was in support of the Trevor's plan for treatment for the Virus, also felt like it was Bell's Palsy, has piggy backed on the blood draw from Dr. Nichols office today to check his vitamin levels and anemia. He was kind and gentle with dad and could see that Dad is distraught and depressed. I suggested a mild anti-depressant that got me through the loss of mom... It is called Lexapro. Dad will begin taking it tonight. Dr. Nguyen felt it might help Dad. He wants Dad to feel like he can move around, get around and have a bit of energy. He is a very compassionate doctor.

Dr. Nguyen wants to ensure the Furosemide and Allopurinol are STOPPED. He said to give Dad 500 mg of Tylenol every 6 hours instead of the Tylenol with Codeine, as that is making him too tired and could be exacerbating his depression - plus Dad hates how he feels on it. He said Dad SHOULD not take aspirin or Advil.. which I didn't know.. so that was a good update for me.

Dr. Nguyen said, after he looks over all the tests and confers with the other doctors, he needs to see Dad next week (Tuesday, August 7th at 3pm)- Tom or John.. you can likely change that if you want to set them up back to back with Dr. Trang. He, at that point will discuss how to proceed with the Chemo, and the possibility of putting Dad on and appetite stimulant to enhance his food intake. I had a friend tell me that she is on medical marijuana in pill form.. and that it has helped her mood and her appetite, while also controlling some of her pain from the chemo and infections that she has. She is also undergoing chemo for Cancer, but not lymphoma.

Dad said everything tastes salty, that he always has a salty feeling in his mouth.

Dad is resting now, for about another 15 minutes, then we will go to the Radiology place for the MRI. We will not know the results of that until we meet with Trevor tomorrow morning. Let me know if you have any questions.. or if it seems like I left something out. Love you all...

---

July 27th

Tom just called.  Dr. Aziz called him this morning and Dad has to have some fluid drained from his lungs again.  Tom is going to get the blood work done today and the procedure is scheduled for Monday morning.  To put it in some perspective, Dad’s thoracic cavity was drained on 6/28 and then again just 12 days later.  Monday will be 20 days since the last tap.  Dr. Nyguen’s appt has been moved to Tuesday at 1:20 for a couple of reasons; so he can see Dad after the fluid removal, to get his thoughts on Dad’s ear pain if it is still present, and to give us a little more prep time for the chemo. 

July 25th

Just returned from the visit with Dr. Aziz.  Dad’s BP was 154/56 with an O2 level of 97.  Dr. Aziz was pleased with that and listened to Dad’s lungs and said he sounded good.  Dad complained of shortness of breath and Dr. Aziz ordered a chest xray.  He said if the lungs have too much fluid he will have to drain it again.  If not he will wait until after the second chemo treatment.  We went over to Kern Radiology and got the chest x-ray.  Dr. Aziz will only call if Dad NEEDS TO HAVE his fluid drained again.  Otherwise we set an appt. for three weeks. 

Dr. Aziz said the physical therapy would help Dad’s condition and said he would prescribe it, but would prefer to have Dr. Nichols prescribe it.  So, Tom, I don’t know how this works, but if you could ask Dr. Nichols office tomorrow that would be great.  I don’t know if it makes a difference but I would like to use Glinn & Giordano at 24 & and M.

Other observations:  Dad’s ear is bothering him.  He sees Dr. Rabinov tomorrow – just in time.  I would hate to have to take Dad out of county to see a specialist, but we might need a fresh pair of eyes on this problem.  Dad’s ankles seemed to be slightly swollen.  I think that happens in the afternoon though.  He had breakfast with Nedra and lunch before the doctor visit.  He seemed okay for most of the time I was with him.  It’s doctors – sit around and wait.

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 17th

I called all the doctors, here the schedule:
 

Tomorrow (Wed)

9am - Dr. Nygene (Cancer Doctor)
3pm - Dr. Nichols

July 26th (Thursday)
1pm - Dr. Siaki

July 27th (Friday)

4:30pm - Dr. Rabinov

Dad lost his right hearing aid. We'll need to deal with this at some point. With any luck, he'll be able to wear it after the 27th.

Medications - Here are his current meds:

- Prednisone, 50mg, twice a day through tomorrow only.

- Allopurinol, 300mg, 1 per day, 30 days

- Metronidazole, 250mg, 3 per day, 9 days

- Furosemide, 40mg, 1 per day, 30 days

- Atenolol, 50mg, 1 per day, 90 days

- Inhaler, Proair, HFA 90 MCG IWAK, Albuterol Sulfa, 2 puffs as needed.

- Ciprofloxacin - Ear Drops

- Vitamin D - One a day

Let me know if you have any questions.

Love,

...Jim

July 13th First Chemo

I believe this was Dad's firts chemo treatment.

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 9th

Dad is in his room resting comfortably.  When Tom called, Dad was in the background making snoring noises.  Right now, Tom says they want to set up an IV and, are you sitting down?, draw some more blood.  Tom told them to take a little extra and Dad gave Tom the single-finger salute. They have a good nurse named Lyza on duty, and the shift nurse is right across the hall from Dad’s room. So should he have any complaints, he can walk across the hall.  BTW, he is in room 485. 

Just got this from Tom:  Dr. Aziz the lung doctor is going to extract the fluid in Dad’s lungs tomorrow morning, once that is done, they will do a CT of his lungs to see what, if anything is going on in there.  For the rest of the night they are just going to monitor his breathing.

Cate, I think we should let Aunt Lillian and Aunt Marge know that Dad is back in the hospital.  I don’t have their emails, but if you want me to handle it, I can if you forward me their addresses.

It sounds like everyone is one there way or close to it.  If you want to call Dad’s room the hospital number is 661-324-4647 and ask for room 485

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.

July 6th

Tom texted me Dad’s new prescription - Rifampin. It appears to be a strong one, sometimes used to treat MRSA, which is a bad bacteria. There are the typical side effects – itching, flushing, headache, drowsiness. At least it is an oral one….

John

July 6th

Dad had a full day of doctors today and as you can imagine he was a little down about it.  Dr. Rose had him see Dr. Nichols for a pre-op exam and then he was off to Kern Rad for a chest x-ray.  After that it was over to Memorial Hosp for and ekg and blood work.  Tom reported he was spent and hungry but after he got some food in him he perked up.  They wanted him to be checked for something called CDEF, a bacterium that can proliferate when someone, particularly the elderly, is on antibiotics for long periods.  CDEF can cause loose bowels and other intestinal problems.  We think they do this through a stool sample, but Tom says no one ever asked for one.  There is a blood test, so maybe they did that.  We will follow-up on Monday.  Dad is home resting now.  I’ll go over tomorrow and visit with him a bit.  He seems to like the Fresh & Easy meals Tom brought by as well as the Insure.  It’s going to be uber-hot here this weekend.

July 5th

Dad got his hearing aids cleaned today.  Guess there is a filter that needs to be changed regularly.  Tom got a box of those.  Tom and Dad walked 31 minutes last night around Tom’s neighborhood.  That was a stretch for Dad and nearly too much.  Tom and Dad were just by here.  They have a doctor appt with Rose this afternoon to check on his ear.  The subject of driving came up and Tom and I aired our concerns.  Even with the cleaned hearing aids I would say our opinions fell on deaf ears, except for the fact that Dad will ruminate over some of the things we said and maybe take them to heart.  Tom was going to have him drive home from here to get him back in the swing of things (it’s been what 6-8 weeks since he’s driven?)

Dr. Rose:

Just got off the phone with Tom who had been to see Dr. Rose.  There are signs the infection is returning.  She doesn’t know if it’s related to the lymphoma and does not recall ever having a case like this.  They put Dad on another oral antibiotic and the plan is to have Dr. Trang come in and excise the ear to see what is going on in there.  If Dr. Trang does not do it then Dr. Rose will (Does anyone else get the feeling this is what Dr. Rose wanted to have happen when she admitted Dad to the hospital 6 weeks ago?)

Anyway, there are only a few details.  Tom was heading from Costco (for the antibiotic) to Dr. Rose’s to fill out some paperwork.  The procedure will last about an hour and require a general anesthetic.  It will be done next Tuesday and we think it will happen in the morning.  The location has not been finalized.

Dad was running out of gas so Tom took him home and is doing the running around.  Thanks for that, Tom.

July 3rd

Just got off the phone with Tom and he reported that Dad’s appetite is almost non-existent and he is somewhat lethargic.  This started, I believe Tom said, last night at dinner and this morning at breakfast.  The lethargy isn’t so unusual but from my time with Dad and watching him eat, it always amazed me how good his appetite was, so this does concern us a bit.  Dad has an appt with Dr. Nichols this afternoon. 

We think there could be one of two causes for the loss of appetite.  One, it could be the new med.  Jim, you read through the lit on that, any thoughts? 

The other could be a fluid buildup in his abdomen similar to what occurred in his lungs.  The fluid could be putting pressure on his stomach making him feel full all the time.

We’ll let you know what the doctor says.  My advice to Tom was to ask Dr. Nichols what would happen if we stopped the new med, but I think Dr. Nichols will go deeper than that.

Tom, I have a meeting from 5:30 until 10 tonight and will not be available.  If you need to contact me before or after that, I will have my cell phone handy.

Doctors report:

Dr. Nichols said Dad was looking better.  His lungs were in good shape.  He did take him off of one medicine and put him on another, Megestrol (Megace 40 mg) for his appetite.  His demeanor was better and once Tom and Dad started working on a project, Dad seemed okay.  He did pack his bag and plans on staying at his house tonight.  The Life Alert came late today and we are going to install it in the morning.  Dr. Nichol said Dad has about 5 liters of fluid in his abdomen and he advised against removing it.  He said it would likely just fill back up and Dad runs the risk of having some of the cells in his abdomen die (I guess as a byproduct of the fluid removal).  I think I got most of the important points.  Tom and Dad are headed to the Olive Garden where I’m sure they’ll eat like family.