Chemo Update

So dad has been feeling much better with his 3 week break from Chemo. He's up and around, walking, driving, shopping, eating, etc..
Dr. Shaw has made the decision to discontinue Xeloda (Because in dad's case the side effects were just too much), continue with Oxyplatin and start a new Chemo called Flouracil.  Flouracil is another IV chemo like Oxyplatin which means dad's Chemo treatments at the Lewiston Clinic are now much longer (like 5-6hours).  In addition to longer IV sessions, Flouracil has to be continued for a couple days following the initial push (IV treatment at cancer clinic), This is done with a little portable IV pump that dad gets to wear around his waste.  It injects Flouracil at 2.20 milliliters per hour. Today is the day after dad's "push" in lewiston and he feels quite good.  The side effects are as mild as they have ever been.  The pharmacist said we should not get excited though, the effects are likely to change a lot in the next 2 weeks. 

Family Health Care

Services that were ordered by doctor on 7/8 and are available through Family Health Care:
Social Services -
Occupational Therapist - transfers in & out of bed, physical movement
Dietitian  - food scheduling
Nurse - 7/9/2011 First Visit,   Routine checkups, blood pressure, weight, appearance etc.. 
Physical Therapist - Monday 7/11/2011 First Visit

Other services that are available for the future:
Private Duty - bathing and house cleaning ->  20-25/hour  (caregivers are c&a)
Hospice - If its decided that we no longer want treatment and just comfort instead


130 visits are covered per calendar year -  Starts over on Jan 1st
Nurse is schedueled for Saturday 7/9/2011
Physical Therapist of Monday 7/11/2011

Durable Power of Attorney Needs to be sent to Family Health Care

Dad is out of Hospital

Dad got out of the hospital today.   He said that the hospital was short staffed and it took a long time to get released, but eventually they let him out and gave him the ok to drive himself home.  I haven't had the chance to talk to him tonight, but will talk tomorrow.

Jeanne's weekend in Pullman July 1-3 2011

Just a quick update from this past weekend. Randy checked himself in to Emergency on Thursday night, 6/30, because of extreme dehydration due to vomiting and diarrhea (had to look that one up)... His weight was down to 152. He hadn't been eating for 5-6 days and hadn't showered because he was so weak. I arrived Friday evening. He was still having diarrhea, but the nausea was pretty much under control. Talked to Janette, nurse, and asked if Immodium could be added to the Limodal for diarrhea (like what he had been taking at home). She called the hospitalist and got permission to do so. Randy was on IV fluids. He had developed a severe case of thrush, which coated his mouth and throat, making it painful to swallow. He was using a mouth wash for thrush. Came back in the AM Saturday and spent most of the day with him, taking a few trips out to run errands. RJ was started on TPN IV that has nutrition. Lipids would be added on Sunday. Good to get out of bed as much as possible to keep pneumonia from developing. RJ said he might want to get a second opinion about chemotherapy strategies. While I was out Alisa Schwann from Family Home Care Pullman stopped by with info about home health care. Left brochure and card. Dr. Gehab (hospitalist) stopped by and said home health care was a good idea and that the physician's orders for this would be written when RJ left the hospital. She added something stronger to the oral meds for thrush to increase the pain relief. RJ ate breakfast Sunday (Cream of Wheat, scrambled eggs, strawberry) and kept it down. Talked to RJ Monday - not much change. Tuesday, he said the diarrhea was more under control for the first time in a long time and that it was quite a relief.

Birthday Boy

Randy spent his birthday in New Meadows first at The Sushi Bar in McCall, then in front of the fire eating cheesecake cupcakes. Karen was trying to fatten him up since sushi didn't have enough calories...:) KB

Home Health Care

Today I spoke with Jenifer (Alisa who we will be dealing with the most is sick today) from Family Home Care of Pullman.  The good news is that Dad's insurance covers home health care at 100% for up to 130 visits.  Family Health Care is now just waiting for the doctors orders to proceed and put dad on their schedule. 

Next, I spoke with Katie who works in social services at the Pullman Hospital.  She said that the orders would not be sent out until the doctors had made a decision as to when dad will be released from the hospital.  That means that he definitely won't be leaving today and probably not tomorrow either..   Anyways, when they decide that his health is reaching the point at which he can go home, they will determine what they believe he needs in terms of home health care and then automatically send the orders over.  If all goes as it should, Family Health Care will be able to schedule him in as soon as the following day.  Meaning that he would have someone visiting him as soon as the day after he exits the hospital.

I will be in Pullman on Sunday/Monday (July 10th & 11th).. And it possible he will not be advised to leave the hospital prior to this.  If he does get out of the hospital sooner, there is a possibility he can drive himself home (as he isn't on any inhibiting drugs), theres also the posibility of his neighbors picking him up,  Mom and Michiko have been considering going up to ease his transition back home again, and as a last resort Family Health Care provides a 4 hour take u home form the hospital and help you settle in service (not covered by insurance) for $80... So we have some options.

Past Notes From Chad

03/28

Interaction with Dr Tracy:

“Sir, I've seen and studied and read and now its time to talk to you when in doubt”

anything coming out? gas bowl movements? - yes moderate gas..

How are you feeling: - My energy level is coming back, almost feel like I could be home, most significant pain is tube in throat Some pain in the tummy, a little from gas.

Dr and Nurse discuss: Drain in back was a milky light green for the last week. Turned dark green last night.

Dr- The color is just coming from the leak in bowl. They have been hoping that the leak will fix it self.. there comes a time when a decision needs to be made. do you want to let it heal or do you want to go in and fix it...(not a question directed at dad) The original operation was 20 days ago, on Mar 8th.

Asks about his medical history? Circulation Problems? Randy - Brought up Blood clot and Artery Issue.

Dr. Tracy: This is not how I would have gone about the leak.. I would have operated immediately. Randy needs chemo and the choice to let the leak heal naturally is now delaying the needed chemo... I would have operated immediately, fixed the problem, and we'd be on the path to recovery, preparing for chemo. So what will we do now? the drainage tube in your back has been outputting less and less. That is good, if we can get it below 10ml per day, we could perhaps try a glue option that (i'm assuming would be taken orally) would patch up the hole. So we are going to hope for something like that plus natural healing.. So today we will monitor your fluid outputs for one more day. If all continues as it has, we will remove the NG tube from your nose/stomach tomorrow. And see how you do, ideally the drain in your back will continue to ouput less.

Dr Tracy is here for the week, She enlightened us a bit on how the system works and why dad had seen so many doctors... She comes up occasionally because this hospital only has two surgeons and legally they do not have enough time to visit all of the inpatients daily.. Dr Tracy comes once a month to give the surgeons enough time to see their family and stay with in the legal hours they are allowed to practice. The Nurse pointed out that Dr. Visker (Dad's original surgeon) was on vacation and had been for 12(??) Days.. anyways.. Dad and I are a little discouraged here, because I think that we both would have opted for surgery to fix the leak had we known how long the natural healing process would take. The catch there though is that apparently no one could have told us exactly how long it would take, every body is different. So we're not playing the blame game or anything, we just want to make the best decisions possible. If dad is going to need surgery to fix the leak, then it should happen sooner not later.

03/29 Interaction with Dr. Tracy

Dr Tracy: Sorry I'm Late.. How much fluid is coming out? Nurse is Checking. Bowl Movements? Gas? - Yes.

Dr. Tracy: Think I want to take out the NG tube today. We'll see if you can handle that... If so then we will start on liquids. - Regarding pain medication: can I go back up 2mg at night? It helps me sleep. - Sure, I will change it.

Dr. Tracy: We will be checking to see how you do without the NG tube. If you get a fever, have trouble urinating or have any of the symptoms that you before.. then we know you still need the tube.

Dr. Tracy pulls out the tube. - “What a Relief”

Later in the day: We find out dad's morphine allowance has been cut down to 1mg/4hrs.. Dr. Tracy never discussed this with us so it was a little discouraging.. The nurse called her and ask if we could get more to help in sleep at night. The doctor put him back at 2mg / 4 hrs at night only.

03/30/2011

Today I missed the interaction with Dr. Tracy in the morning, as I understand it was quite brief and basically she just further explained our plan of attack which involved introducing clear liquids today. So over the day, dad has had a cup of coffee, a vitamin juice called boost blast or something.. and half a cup of chicken broth. They have disconnected him from the his IV for a large part of the day, but they say they will hook him up again over night. HE is extremely chipper to have the NG tube out and it appears that his pain is much less than it was a few days ago. Today it also looks like little has come out of the drain in his back. So think positive thoughts and if thing continue in this direction I would hope they will have him out by the end of the weekend. No doctor has said this, it's just my own speculation.

I did get to chat with Dr. Tracy this afternoon. She just dropped in to check on him and he had nothing to really report. She said take it easy and not to drink too much, we don't want to take on too much. Also, she has taken dad off morphine altogether, giving him a pain medicine that starts with T, maybe tramadol?? really not sure though.. And I believe this pain med is only allowed at night.

More updates tomorrow!

03/31/2011

So Dr. Tracy came in today and asked Dad about pain? He said he had a bit in his stomach. She said it looked like a bit of distention but that was to be expected. Also, she mentioned that the drain in his back goes through muscle and it is now probably one of his main sources of pain. She said that having not passed food through his stomach in weeks means that many cells on the inside of the intestine will have wilted or died and that we can only bring them back slowly. So she couldn't stress enough that dad shouldn't drink too much and only consume what made him comfortable. So, he's now going to be receiving a boost drink and a broth at noon and 5pm each day. He will be hooked up to the TPN at night and he seems to be doing well without any morphine.

I was right, the pain killer he is getting is Tramadol, he's taking one pill orally at a time and that happens once during the day and once at night. Dr. Tracy will be leaving tomorrow, as I mentioned before, she is just a fill-in surgeon that comes once a month. She said that dad would be getting to meet his 5^th surgeon tomorrow. Whoever that is, will be here only for the weekend and Visker comes back on Monday. She pointed out that this was one of the serious downsides to small town hospital care. That they can't employ enough full-time surgeons and continuity of care can be an issue. She said, people that don't get sick for long periods of time don't realize this.

Anyways, she told me that we really need to take it slow at this point, he's getting better, he's starting to drink liquids, his stomach is doing better each day, the drain in his back is outputting less & less, but we don't want to push his system too hard and have his stomach stop up or the hole in his intestine to get larger... If he continues as he is, we'll see him out of the hospital next week. But Dr. Tracy said to me it's a slow process and less than a week should not be expected.

--------------------------------CHEMO THERAPY, NOT GOING SO WELL---------------------------------

For Calling The cancer clinic: 208 799 6694

Randy Glen Johnson

May 01 1953

538 54 0271

Called 7/1 - Spoke to Michelle (Nurse) who was in direct contact w/ doctor shaw and pharmacist. Told her dad was not doing well at all with chemo.. he'd been vomitting, had diareeha, was down to 160lbs, and had been to the ER 4 times since last treament. She responded with this isn't ok, we have to find the rind diareeha/nausea medicine before we can go forward. She promised that she would call The Pullman hospital and talk directly to dad or his nurses to coordinate different medication. She said that she hoped we would be able to avoid at home care by getting in control of his nausea and diareeha.

Michelle called back after spekaing with the Pullman Hospital: She said his current hospitalist: Doctor Jobe - till sat morning then - Dr. Storey from then on out... The decision has been made to keep him till he's healthy, eating and such. Back to the bigger picture: Michelle said that these are side affects that we should be able to get under control, as in.. this usually something they can sort out prior to considering stopping the treatment...

- visiting nurse services: One example: ANS