Wednesday, March 23, 2011

Wednesday March 23

I left the Cleveland Clinic as an in patient on Friday evening overloaded on fluids.  During the week, they gave me 17 liters of I.V. fluids with the continous administration of Chemotherphy.  I had two different I.V. lines running 24 hours per day for 96 hours.  By Friday, My legs were twice there original size and my arms, face, abdomen all swollen.  I was throughly exhausted from 4 nights without any sleep.  Besides having a bad roomate, chemo changes at 1:30 a.m-2:30 a.m. every night, labs out of chest port at 4 am, vitals every 30 minutes, peeing every 30-60 minutes, I received no sleep.  I went to radiation after discharge and we got home about 6:30 pm Friday night.  I went straight to bed.  I left the hospital 20 lbs heavier than when I checked in.  Friday night I peed 13 lbs water off, Saturday 9 lbs water off, Sunday night 7 lbs water, and Monday another 2 lbs.  I have lost 30 lbs since Friday evening.  My body had a lot of trouble adjusting to this massive quick fluid loss and I was dizzy and lightheaded everytime I got up.  I had to stay flat all weekend.  I did eat small meals 3 times per day.  I had a lot of nausea and vomiting.  I have been out of "commission" up till today. 

Yesterday, we had a follow up with the Oncologist.  She said I was dehyrdated according to my lab work and that I was not making enough effort.  I told her I could not go through this same regiment again on week 4 that she would have to change it.  She refused.  She said either you do this or nothing.  I told her then I would do nothing.  I cannot tolerate this kind of overload and then massive fluid loss.  I asked her to change dosing regiment or fluid amount, she refused.  At this point in time, she asked me to come back in next week on Tuesday to discuss.  I have decided I will not do this same regiment again.  So we may be parting ways with her on Tuesday.  It seems she is more interested in filling the hospital with a patient for a week than titrating my treatment to my needs.  I will discuss this with my Radiation Oncologist tomorrow at my appointment with him.  I will continue the radiation at the Cleveland Clinic. 

Everyday, radiation treatments have been a issue.  Some days they were 1-1.5 hours behind.  Some days their computers were down.  Monday, a new crew could not seem to get my body lined up in the correct position and it took much longer in an a very uncomfortable position.  Yesterday, the breathing machine was not working for a while and it would not let me breath.  Hopefully, this will go better the rest of the week.  I have 7 of my 30 radiation treatments completed so far.  We go everyday Monday-Friday.  

This morning, I am able to stand without dizziness.  My nausea is only very mild.  I have been drinking a lot of fluids and ate a good breakfast. 

For all those who tried to contact me over the long weekend, I apologize for not responding to you.  I was simply to sick to have visitors or talk on the phone.  Hopefully, this week will get much better everyday.  I am a bit depressed today that I did not get "supportive" care from my primary Oncologist.  I will not accept that kind of treatment. 


  1. Don, I'm at a loss for words...and as you know, this is highly unusual.
    So, the best thing is to let God speak through His Spirit and through his Truth:
    In the midst of everything, please hold onto these two Truths among many:
    Phil. 1:6-
    He who began a good work in you, will complete it...
    Deuteronomy 31:6-
    Be strong and courageous. Do not be afraid or terrified... for the LORD your God goes with you; he will never leave you nor forsake you.
    We will be praying for your appt. with your radiologist and for a resolution to your oncologist's message to some regimen can be followed that will be more reasonably tolerated...whether by her or another doctor.
    I'm thankful you were able to eat a big breakfast and that the nausea has subsided.
    We love you, Don.
    Mike & Heidi

  2. Don, the marathon has begun! You are so fortunate that you don't have heart disease that would not allow for the massive fluid overloading and diuresis. I'm betting that this protocal is for renal protection, and that the diuretic was a bit more than needed. In a place like the Clinic, protocal is what has generated success and it is very difficult to veer from that for patient comfort. I'm sure understanding the why might help get you through it more comfortably. You are so fortunate to be at a place that will attack this cancer aggressively..through a protocal that has a proven track record. Today will be a better day. "I can do all things through Christ who strengthens me" Phil 4:13. I hope the conversation with the Radiation Oncologist will be helpful to result in whatever changes can be made without sacrificing cure! God Bless - Carol and Brian