March 29, 2011 Update

Well, we are still digesting this information:

Dad was scheduled to return to the surgeon who did the biopsy last week. That appt was for 2PM followed by a visit to Dr. M. at 3:20. Dr. M’s office called and said they cancelled the appt because the results didn’t show anything. As the kids might say, “WTF!?!”

Dr. Kay, the surgeon said the results did not indicate anything and that Dr. M would likely request another biopsy probably from under the left arm. If you listened to the audio with Dr. M. we asked where the first biopsy would be and he said he would leave that up to the surgeon. When pressed, he said that was the best way to go. Now, Tom and I remember him spending a lot of time under Dad’s left arm and wondered why he didn’t just go there first.

Dad says he’s done for awhile. It’s hard to blame him. Each part of this journey we’ve (or the Dr.) said, “Just this test and we’ll know exactly what’s up and be able to fix it.” And the results have always been another test. The inactivity from having the tests performed has probably affected his health more than whatever is going on. Okay, maybe that’s an exaggeration, but I don’t think we really know.

For now we believe he is going to take a break from the doctors. Tom asked him if he wanted to schedule an appt with Dr. Nichols and he declined. Nedra will be back on April 1 and we think that may really perk him up.

Love you,

John

March 22, 2011 Update

Tom just called. Everything went well and Dad is in the recovery room. The doctor removed two lymph nodes from Dad’s abdomen. He can not drive for a week. He can not play tennis for three weeks. They want him to stay with Tom for a couple of days to recover. We have a follow-up with the cancer specialist on Tuesday the 29^th and another with the surgeon just to make sure this surgery is healing properly.

I think that was all for now…

John

March 21, 2011 Update

Dad goes to Memorial hospital tomorrow at 9:30 am for a lymph node biopsy. We are told this is a minor, out-patient procedure that will get us a definitive result on the condition of Dad’s lymph nodes. Tom will take Dad in and get him back home. I will update everyone via email as soon as Dad is back at home safely.

Love to all,

John

March 9, 2011 Update

Hi all,

Dad had his consultation with the blood specialist yesterday afternoon. I digitally recorded about 8 minutes of the Dr.’s discussion. I missed about the first 10 seconds. You can download the discussion, if you wish, using this link:

http://www.mediafire.com/?daeucil3c1n5isl

The Dr. suspects lymphoma but needs to confirm the diagnosis, type, and style of the lymphoma and has recommended a surgeon take one of Dad’s lymph nodes for biopsy. Tom is taking Dad to the surgeon today for an initial consultation. It should be an outpatient procedure. We have a follow-up with the blood specialist in three weeks.

We also got a copy of the PET scan results. I would be happy to fax anyone a copy if you wish. There a couple of frustrating points from the visit, mainly the fact that we didn’t get a concrete diagnosis. Perhaps that’s good though. It could still be a non-malignant lymphoma. The pet scan was listed as “a comparison to the prior CT scans …of July7, 2009” which I interpret to mean that they saw something back then, but failed to adequately communicate their concerns to Dad. The PET scan report is fairly technical document, but I can see a few positive notes such as this statement, “Again, the overall changes suggest mild progression of lymphoma.” And, “Both lungs are clear without pulmonary nodules or pleural effusion.”

I am hopeful that this biopsy will give us a firm diagnosis and a list of treatment options to choose from. Saw Dad this morning. His tennis game is about the same. His eyesight seems to be pretty good. I think he has lost some muscle strength though.

That’s about it for now. Let me know if you need anything.

Love you all,

John

Feb 16, 2011 Update

Here is the link to the audio file of Dad’s 1^st consultation. It’s the last 5 minutes and the voice you hear is Dr. Mocha-ba-dye.

The final results will come on March 1^st.

I’m not sure if I mentioned this yesterday, but the Dr. asked if we had been there before. Tom & I looked at each other, Dad shook his head no, then when the Dr. said it looked liked there was a scan done in 2009, Dad said, “oh yeah, Dr. Nalos ordered that”. The Dr. then said that the report mentioned something about lymph nodes in that report and Dad replied, “He gave me the results and said everything was fine.” Dr. M looked puzzled and said not to worry they would do the tests again to see where we are at. The two things I take away from this is could we have done more if we knew back then, and if it’s been going on for two years it must (hopefully) be slow moving. Anyway, Dad has one scan today and one tomorrow. Take care. Love you,

John

Feb 1, 2011 Update

Attached are the notes from yesterday’s doctor visit. You will see that he ordered several blood test again, the main one rechecking the kidney. He is also checking on dad’s anemia and if it is too low he will order a blood transfusion for dad.

Dad is primarily concerned with his control problems and told the doctor that the stream is better sometimes, but that the frequency is not. The doctor told him that it might take time for the swelling to go down and see some improvements in the frequency.

He reviewed all his medications and told him to continue all the prescription meds.
Dad was given a cream for the rash on his back, but the doctor was unsure as to what caused the rash.

The doctor also told dad that he has swollen limp nodes about 1 inch around. These were detected on the CAT scan they did of his kidney a few days before his surgery. The doctor told us that to evaluate them they would have to open him up from his belly and work their way to the back to biopsy them, they are located near his back, but there is no easy way to go in from his back. If it is cancer, then the chemo treatment would have to be sever to have a chance of killing them.

The doctor also discussed his anemia stating that they would like to go into his bone marrow in his thigh to see why it is not making enough red blood cells.

Dad refused both procedures and told the doctor, fix the frequency problem first and we can talk about what is next.

We did talk dad into trying a sleeping pill at night to see if he can sleep better. Dad wrote down every time he got up the night before his doctors appointment and it was at least once per hour. He did try 1/2 pill last night and said it wasn’t much better, but he didn’t get up until Tom went over at 9:45 am and did have a 2 1/2 hour period where he didn’t wake up.

Dad’s next steps are:- Blood test again the week of Feb 28th.- Drs appointment on March 7th at 2:45 pm with Dr Nichols- Follow up with Dr Chang on April 25th at 11:40 am.Tom, let me know if I missed anything.

Love to all,

Bill

Jan 19, 2011 Update

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Subject: Dad's Upcoming Procedure
Date: Wed, 19 Jan 2011 10:59:51 -0800

Cate, Bill, & Jim,

We have more information on Dad’s upcoming procedure on January 26^th. There are two approaches to opening the urethra. One involves laser and one involves scraping. The scraping procedure is a little more invasive. Either way Dad will be out of commission for two to six weeks depending on the severity of the procedure and his healing time.

As with any medical procedure, especially on an 87 year old, there are dangers. Dad is having a kidney function test on Friday and goes in on Monday for a pre-op check. His heart has tested well, but the anemia could be a problem. His procedure will last 2 hours. We believe his doctor to be competent and thorough.

Tom and I discuss our roles here at great length. We try to relay the information we have accurately and completely. We understand the distance between us must make it very frustrating for you. It’s difficult to word this without sounding dramatic. After all, the doctor says he has been doing this procedure for five years and has performed it on men as old as one hundred. Tom and Mary will take care of Dad after the procedure. They are very good at this and Dad is very comfortable with them. But Tom also wants all of you to know that his home is open to anyone who may want to come down to be with Dad before, during or after the procedure. It may be a bit crowded at his house, but he wants you to know that everyone is welcome.

Again, it’s difficult to convey this kind of stuff through an email. Are we worried? Yeah, we are our mother’s sons. It’s genetic. Dad has never had a surgery, so we have nothing to compare this experience to. Are we confident this is the right direction? We believe so. For Dad to want to undergo a surgery to correct this problem demonstrates how much it is cutting into his quality of life.

If anyone has any questions, please feel free to call. If anyone would like to come down, Tom’s home is open.

Love you all,

John