Mon, Nov 3

 I moved from ICU to  the 8th floor around 2 PM. I took catnaps consistently from 2 to 5 PM. Last night I battled with pain to get through the night. They would give me morphine interveniously. The morphine would break the pain to help me to sleep, but only for an hour at a time. I would struggle to sleep between the times I couldn't take it.  The morphine made my thinking muddled. I had hallucinations and couldn't determine whether it was reality or not. It was very disorientiing. I thought I called my brother at 9 am but it was really 9pm.

A doctor from ICU listened to my chest. It was a lot better. The neurology doctors dragged a few new med students along when they came by to show them my rare condition. The surgerions also came by. It sounds like that the nerve biopsy may happen tomorrow They are concerned about low platelets. I will have an infusion to increase them probably tomorrow before the surgery. My  platelets are now around 20,000, they want them around 40,000. I asked him about putting the feeding tube in. They said not right now because they want to get in and out quickly for the nerve biopsy. Dr. V my oncologist  is waiting for the nerve biopsy. If it shows leukemia it will help her to determine what chemo drugs to use. If it is HVGD, it will help determine the steroids to use. She wants to load me up with fluids before I start the chemo. If they do the biopsy early in the day and get the results back, chemo should start tomorrow. If it's late in the day I may still get some fluids but the chemo wouldn't start till the next day.

The speech therapist came by and is my new best friend. She said that I could have ice chips 4 times a day. Chewing ice chips felt glorious, after not eating or drinking for five days. Chewing ice chips is better then…well, it's better than a new car. She also gave me exercises to do to improve my swallowing. I had two major bathroom accidents last night and today. The nurses are great.

And if your [lateral nerve on the outside of your left foot] causes you to sin, [have the surgeon] cut it out and throw it away. For it is better that you lose one of your members than that your whole body go into hell. (Matthew 5:30 ESV).

   "This too shall pass", said Doug from the portable potty.

Sunday, Nov 2- latest news from ICU

I slept ok last night...maybe 4+ hours.

The pain from left rotator cuff moved to left hip and down hamstring.  I felt like it was beginning to tear, so I had nurse wrap it in AC bandage at 2:00 am.  This morning was much worse, so I had ice pack put under bandage.  A little while ago a doctor came and inspected it.  She thought it had weakened, but had not torn.  Just keep ice on it.  They are also going to get me some cough medicin.  

About returning to BMT 8th floor (my latest goal in life)?  First, I must qualify by receiving oxygen in single digits.  Yesterday, they reduced my flow rate per minute from 12 litters per minute down to  8 and were able to maintain same oxygene level of 95%.  BMT wanted to see min of 92%.  They turned down oxygen again and my oxygen level actually increased to 97%.  So, it's beginning to look favorable to my return to 8th floor today!  A very big yea!  This will allow me more freedom to move around and get better than is permitted in ICU.

What about permission to drink?  No such luck till at least Mon or Tuesday.  Docs want to see improvement in my nerve, not just pneumonia...which has no time goal just yet.

Just saw ICU doc.  He listened to my lungs and thought pneumonia sounded much better and noted I was way down on oxygen.  He will recommend to BMT on 8 that I return.

Surgeons may talk with oncologists today to see if they want or really need info that would justify ignoring three risk factors: my level of oxygen, blood clot and high blood pressure.  Head surgeon won't return till Monday to make final call.

I will update this post throughout the day.

Sat. Nov 1

Daily blog info:

ICU doc still hears sounds pneumonia; doesn't think they will release me back to BMT  8th floor today, which is depressing.

Question as to when on nerve biopsy?  According to Paul in Neurology, decision held with pulmanatorty guys, who are afraid of pneumonia, which equals delay.  Bummer!

I have requested a Physical Therapy while in ICU.  I really need to get out of bed.  After hitting the call button and then getting permission, it took ten minutes of unhooking tubes to allow me to walk 12 feet to toilet.  I wobbled a bit, which got the nurse concerned.  If they would allow me to walk 1,200 feet, with shoes on, I'd do better,

I've requested swallow test, which has been delayed because of pneumonia.  I have't ate or drank anything for days...that hasn't gone through a tube.  It doesn't look promising that I will eat or drink until pneumonia cures up.  Bummer!

Met my new oncologist doc for month of November.  They aren't starting chemo in any serious way until they see nerve biopsy, which is on hold (even with local).  They all agree lots of steroids would help.  I can't return to 8 because I'm taking so much oxygen.  They have begun to cut the rate back the flow rate from 12 to 10 liters/minute and see if my oxygen level stays above 92%.  Still no rush on doing swallow X-Ray test .

Well, who can I blame for all my problems?  Doctors, Obama, the Tea Party?  No.   Sadly,
I am responsible for aspirating food particles into my lungs.  I'm the one to blame,

Surgeon walked for a talk.   She will talk to  her  staff and try to schedule nerve biopsy in a few days.

Fri, Oct 31 Late Day Update

The ICU doctor said that I looked bad yesterday and that he expected me to look worse today, but he says I look much better. He says I may be released to the 8th floor and start chemo tomorrow.

The radiologists looked at the MRI and found a nerve to biopsy. It is an enlarged and highlighted nerve in my leg. The biopsy will probably be Monday. It has been delayed because of the pneumonia in my right lung.

This morning they replaced my heavy air mask with a much lighter tube in my nostrils, which is better. And sometime they will remove the feeding tube from my nostrils and put it directly in my stomach. This will not preclude me from eating or drinking on my own. I don't miss eating or drinking, but I dream about milkshakes and warm, chocolate chip cookies.  They're also planning to do another swallow x-ray tomorrow.

It's odd, I fall asleep very quickly these days and sometimes I will talk out loud in my dreams, only to wake up and realize that two people are in the room trying to understand what I said.

Hopefully I will be able to make it out of the hospital by next Tuesday.

Heart Rate 113 / Blood Pressure 134/97 / Oxygen 94-100 with the tube and steady 87 without

Friday, Oct 31- docs still won't let me eat or drink

I just don't have much breath, so it's hard to talk.  Feeling much better today.  Hope to get swallow x-ray test again today.  As Sherry noted yesterday, I may be moved from ICU back to 8th  floor tomorrow.  I'm going to lobby hard for right to at mleast drink, but may have to rely on feeding tube.  It's weird, I miss estting

so much I dream about eatting.  I  spoke with a couple of ICU doctors about installing the more permanent feeding tube directly through tummy wall, as opposed to the one coming down my nose.  Surgeries may have to wait till pneumonia is resolved.

Word is radiologist reviewed my MRI and found a nerve to cut...ahh biopsy.  The info from biopsy will be used by Patel and Anderson to pick which chemo drugs to use down the road.  I think they are  ready to start me on something tomorrow night.

I still can't eat or drink anything.  I rely totally on feeding tube.

I really like the Neurology staff.  Although the ICU doc gave me a mean look and a lecture for setting off the bed alarm, for the third time..  I just think I will feel much better by Tuesday,

Thurs. Oct 30 - More complications

I was admitted to ICU around 3:00 a.m. early this morning because of insufficient oxygen - They like to have it above 92. Mine was 88. So. I now have to wear an oxygen mask.

 An X-ray of my lungs showed that there are particles in my lungs resulting from food going down the "wrong way into my windpipe." So, I now have pneumonia in my right lung. They are treating it with antibiotics. Another thing they did was to put a temporary feeding tube in. It is a tube that goes through a nostril and all the way down to the intestines. It was very painful and it took 5 tries to get it right. After each time they took an X-ray to see if the long and narrow tube ended up in the right place. Meanwhile, I was without any nutrition or pills all day. I was not allowed to have anything by mouth including ice chips or water.

The various docs, along with their students and residents, came by:  pulmonary, neurology, and oncology. The pulmonary group came first. Based on an X-ray of the chest, they concluded that I have pneumonia.  At this point, the Pneumonia gets priority because I can't go under anesthesia (for the nerve biopsy) with pneumonia.Neurology is still waiting on the interpretation of the MRI of the leg to determine where to do the biopsy. And oncology is waiting on the biopsy.

I've been in a lot pain today despite them doubling the morphine.


Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. (2 Corinthians 4:16-18 NIV)

4:25 Oct. 30 ICU

Wow!  I sure got the attention of three rapid response teams tonight.  Mark, my nurse, was concerned about my oxygen level: 88 vs accepted low of 92.  He spent an hour hooking me up to more accurate sensors.  Then when he left I thought it would be a good idea to eat some of Pam's delicious, dense cinnamon honey bun that Mark brought for me.  It was great, until it got totally stuck in my throat.  I have serious problelms swallowing.  Honestly, I got scared for five seconds. I ripped out the sensors on my chest and was finally about to cough some up and breathe a little.  A bit more hacking opened up my wind pipe.  An x-Ray showed I had inhaled a good bit of food particles into my lungs.  This aspiration is very is very dangerous for me.  So, I don't get to eat or drink anything without another swallow test.  So, here I am in ICU.