4/4/2012

Time for an update I see.

I'm been taking the Votrient now for 8 days.  The roughest part is getting up at 6:30, drinking a full glass of water and not eating for a three hour window.

The side effects have been very minimal.  Appetite is maybe slightly affected; drowsiness also just a little worse than before; diarrhea a little bit; and blood pressure - not sure.  I think my machine is not giving me an accurate reading, but my bp is so low anyway, that a little elevation would probably be good.  My CT scan which I had last Thursday shows some tumor growth, but I was told that would happen at first.

All told, I'd say the report is pretty good.  My Fentenyl patches seem to be working for the most part for pain control.  I'm able to do bookwork, repair clarinets (cause I get bored), and play some games with family.  I haven't been anywhere except the hospital for over a month now.

Visitors are more than welcome - just don't stay too long cause I do tire.  Thanks for your concern and prayers.  I'm not out of the woods, but the trees have thinned slightly.

Jim

3/23/12

Greetings

I'm still here - not much change in the way I feel.  Still got the pain in my leg and in my mid section.  Much of the pain is a surface pain now, kind of like shingles if you've ever experienced that.

I'm going to try something new starting next week.  There's an immune enhancer that doesn't seem to have the serious side effects like some of them.  It's call Pazopapib or Votrient. It's taken orally in pill form once a day.  It's not a cure (cause there doesn't seem to be one), but it could prolong things.  It's also very expensive.  Glad I have some pennies saved up.

They did blood work this morning on me to get a base line for this votrient.

Had lots of company this week.  It's nice to do some visiting.  I'm getting sleepy right now.  I threw up a lot this morning so I don't know what's left in my body.  Take care and remember me in your prayers.

Jim

3/13

Someone reminded me today that I hadn't entered anything on my blog for a while.  Sorry about that.

There really isn't much change over my last entry.  I had the 8 gray radiation on my testicles last Wednesday.  No pain, but I really wouldn't describe it as a fun experience.  I'm experiencing pain in my abdomen which I guess could easily be the result of the testicular thing.  Since it takes about three weeks to get the full effect of the radiation, I'm not feeling much different there.

My leg hasn't bothered me much the past few days.  I'm hoping that the radiation on that did do something.  I'm able to get some good sleep in.  I usually wake up in the night, take an oxocodone, and work on my computer or on clarinets for 45 minutes or so.  The pain subsides and I can usually fall right back to sleep again. 

I am using that Fentanyl patch so I've cut way way back on the oxocodone.  Unfortunately the Fentanyl is a narcotic just like the oxocodone.

My appetite has been fairly good.   Since I've lost 50 pounds since last summer, that's good.  I'm trying to eat stuff to put a little weight back on, but that isn't happening.

I guess I'm on hold right now medicall speaking.  I see my oncologist in a couple of weeks. 

I've had company off and on, and have enjoyed very much the visits.  Please keep me in your prayers. 

Jim

3/2/12

Can't sleep again.  I had lots of pain on Monday, so after calling around, we ended up at ER at Sunnyside.  I had been switched to morfine the Friday before and not only did it not do me any good, it also made me nauses.  The doctor at Sunnyside took me off and we went back to osocodone.

It was also determined that the cancer was in my testicles, so I got in to see the radiologis yesterday.  Sure enough.  They are going to "light me up" there next.  Appointment is Wednesday.  It'll be a one shot 8 gray radiation.  Gives me something to look forward to over the weekend.

They also changed by pain meds.  I now have a 36 hour patch called Fentanyl Transdermal system.  It's not supposed to kick in for 12 hours.  It did kick in yesterday right on schedule and I was ready to go skydiving.  Unforunately it didn't last.  I know you thought I always get up at 4:00 AM.  I was doing store work, but had to keep correcting things.

If any of this dosn't make sense, I'm really tired. 

Take care - I'm going to say a couple more prayers and try to sack out again.

2/27/12 (barely)

Can't sleep.

My new thing now is pain in my leg and back during the evening and now night hours.  There's several explanations.  The tumor in my leg that was radiated last week is probably the culprit. It could be the cyatic (sure don't know how to spell that one) nerve because I've been sitting many many hours a day or could be a swollen testicle.  Whatever the culprit, somethings sure hurts.  Other than that and suffering from lack of sleep, my appetite has improved and when I'm not in leg and back pain, I almost feel like living. 

My alarm clock is about ready to beep me for pill time.  Thank goodness for oxocodone and some nausea pills. 

I do plan to write a book on my new diet.  I've lost 45 pounds since last summer.

Take care

Jim

2/18/12

Have a few updates this week.  I saw my radiologist on Wednesday and did a CT scan on my leg.  I have a tumor growing there.  We did an 8 grey radiation on that yesterday.  The radiation seems to be doing more that anything to the tumors.

The tumor under my arm has shrunk to almost nothing and there was no sign on the scan of the tumor in my pancreas.  As long as the tumors don't show up in vital places, they scan be zapped with radiation.

In the long term, my oncologist at Kaiser said he can't cure the cancer - only buy more time.  My hope is or the "GREAT" healer as far as a cure.

We are looking at a chemo drug called yurvoy.  The problem is the side effects could be worse than the cure.  My feeling at this point is treat with radiation long enough to see if another immune enhancer (like yervoy) gets approved that doesn't have the side effects.  When you've been in pain for some time, it seems like the last thing you want is more pain. 

The pain in my leg from the tumor there seems to be getting a little better.  I'm able to get some pretty good long naps.

I started a 1000  piece jig saw puzzle yesterday, and then wondered if I really needed more frustration.  I asked Jodi to pick up an easier one today - Maybe 25 pieces - the smallest of which is 3 x 5 inches.

It really does make a difference when someone says:  " You're in my thoughts and prayers"  If there is a good side to all this - that is it ! ! !

Jim

2/8/12

I made the trip to Seattle yesterday and talked with Dr. Nghiem.  He was impressed with the way the tumor under my arm had shrunk, but really couldn't tell anything about the one in my pancreas.  He's talking with my oncologist at Kaiser to help decide what to do from here.  It's too early to do another scan.

He talked about a drug called yervoy.  It enhances the immune system instead of killing everything in it's path (good or bad) like Chemo or radiation.  There are apparently side effects that could be worse than the cure. 

He also said there's a couple other immune enhancers that seem to be real good and do not have the side effects.  Problem is they haven't been approved by the FDA.  He's hoping I can hang on with radiation until they do become available.

As far as I feel - crummy pretty well says it.  I threw up three times yesterday (Partically because of the long trip I'm sure), but I've also had that problem today.  I did manage to get to the store to take part in an interview of the person that will be taking my place in the repair department.  He seemed like a good choice for us at this point, and I'm exited for Jodi on that.  He will come on board the first of May after he's finished repair tech school.  He doesn't bring a lot of experience, but does bring the desire to work with Linda whenever need be.

Got off a bit there.  I didn't feel a lot of pain today - just nausea, so I skipped my pain medicine and I think that got me way off track.  Got my buddies coming to play cards tonight, and I think I might have to bail.  I hate to do that.

I won't post again as long as there's no change.

Thanks again and again for your thoughts and prayers.

Jim

2/5/12

Not much new to add to my blog, but lots of people have been asking so I'll thought I'd better add a few words. 

I've just been feeling "not so good" since I got home from the hospital.  I'm taking oxocodone, itch medicine, and nausea medicine to feel somewhat like living.  My jaudice is a lot better.  I still itch, but my color has reallly cleared up.  It's funny cause I'm normally a morning person, and now that's my worst time of the day.  I do walk a little each day, but other than that, I've done pretty much nothing.

I go to Seattle this Tuesday to see Dr Nghiem at the Cancer Care Center.  Jodi and Heather are taking me up.  Joyce has an apppointment with her oncologist the same day, and we couldn't get either changed. 

Hopefully he has a good next step take.  I'll bring this up to date then on Wednesday. 

Thanks always for your thoughts and prayers.

Jim

January 27, 2012

Hi again

The last four days have a been interesting to say the least.  I wanted to bring you up to date on my Merkel Cell .  If some of this doesn't make sense, it's because I'm exhausted.

I got up last Sunday moning and debated on whether to go to church or stay home.  After some pain, itch and throwing up, the decision was whether to go to the hospital or stay home.  The hospital won on out (thank goodness)

Joyce took me to Southwest to start with.  After a bunch of tests that determined that my pancreas and liver were blocked.  they decided I needed a stent in place to drain the belirubin and a couple other ensemes.  Since it was a major thing, they preferred that I be transferred to a Kaiser establishment.  That was a fun ride in the ambulance.  Did you know the new ones have 3/4 ton suspension instead of 1/2 ton.
I had jaundice pretty bad by then.  My body was the almost the kind of the tan (or yellow) that I always wanted.  It was pretty even too.  My urine was actually the color of a great tan. 

They kept me on oxocodone and morphine as well as itching creams the rest of Sunday.   I also hadn't eaten since Saturday morning by this point.  I usually can't go more than  three hours without eating. 

I woke up Monday AM feeling pretty decent.  It got worse as the day wore on.  By the time my surgery came around I was in a lot a pain.  My surgeon didn't at all look like a surgeon, but she was apparently was quite capable.   She inserted the stent by going down through my esophagus.  When I was in recovery, the pain on my stomach was almost unbearable.  Have you ever wished the good lord would take you right there and then?

They got the pain under control after about an hour and I spent the rest of the day very uncomfortable, but very alive.

The pain was bearable the rest of Monday and I was looking forward to going home on Tuesday. 

I slept pretty good through the night and woke up feeling not too bad.  I was to have radiation on Tuesday at 11:30. dddddddddddddddddddddd (Oops, I just fell asleep with my finger on the d key- I erased most of them).   By the time a male nurse came in to release me, I was feeling like crap again.  Joyce and I had a pretty good argument with the nurse.  If if would have felt better, I would have punched him in the nose.  He was so-o-o-o-o-o-o rude.  (I'm going to add in here that the rest of my doctors and nurses were incredibly nice and professional.)  Only take one bad apple to spoil the bunch.

I got to stay another night finally, and was treated with wonderful care.  On Thursday, I felt good enough to do the radiation, so thay checked me out and Joyce and Jodi took me over to interestate.  The radiation was terribly uncomfortable because I was laying on the seam on my jeans.  I could have moved, but we would have had to start all over again, so I chose to bite down and bear it.

Got home from radiation in the early afternoon, and started hurting.  It got so bad that I couldn't stand it - so off we went to the hospital - again (Sunnyside).  I had waited too long after my radiation to take medication.  I was in so much pain that Jodi wanted to call the ambulance.  I talked her out of that and we drove over to Sunnyside.  After several hours they got the pain under control. 

Today I stayed home.   I've felt bearable all day but horribly sleepy.  I've fallen asleep twice in my chair, three times at my computer and once on the toilet.

Sure was a fun four days.  I hope I didn't put you to sleep hearing about this.  I'm off  to bed. ddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddI I fell asleep with my finger on the d key.  I erased most of them.

Your thoughts and prayers are appreciated more than you'll even know

Jim

1/18

Lot's of things happening.  My radiologist was concerned with my symtoms yesterday and ordered a CT scan.  Found cancer in my pancreas, liver, right shoulder and an enlarged gall bladder.  I called Dr Nghiem in Seattle this morning and got a response within 5 minutes.  Since I'm just finishing radiation, some of the techniques are not possible.  There is however a procedure that could be done right away.  They are apparently going to do a  one time heavy dose of radiation right on the tumor.  Dr Nghiem has had some interesting results with that recently.  Dr. Nghiem is working with my radiologist at Kaiser and apparently we're going to get that going today.

Don't know much more than that at this point.  Please keep me in your prayers.  

Jim

1/17/12

Sorry  I haven't kept up my blog the past couple weeks.  I've been feeliing really cruddy and have spent most of my time on the couch or bed. 

I did get approved for another consultation with Dr. Nghiem in Seattle.  That is to determine the next course of action.  That appointment is February 7th.

I've got two days of radiation left down here.   The tumors have shrunk which is what the plan was.  Because of radiation or medication or something, however, my stomach has been very upset.  I carry a bag with me at all times.

Food doesn't taste good anymore either.   blah !  !   !   !  

Hope things turn around soon.

Jim

1/6/11

Got a letter yesterday from the medicare board in New York and they are requesting more information before they make their final decision.  I'll take that as a small ray of hope.

Jim

1/4/11

Don't know which is worse - fighting the insurance companies or fighting the cancer.  I've been denied twice at Kaiser and my case has been sent to the national medicare board in New York. Haven't heard from them yet.

I did see Dr Ngheim yesterday in Seattle.  Since my insurance would not pay for the visit, he got me in by using me to test a new machine.  Interesting side note - I offered to pay for the visit and they can't accept money from patients - is this a screwed up system of what?

I'm starting a 10 day regiment of radiation tomorrow to shrink the visible tumors.  That's the recommendation of both Kaiser and Dr Nghiem.  After that, Dr Nghiem wants to do an immune therapy  - either interferon or yervoy.
If medicare and Kaiser now won't approve that, I don't know what the next step will be or even if there is one.

I'm feeling really cruddy this morning, so I think I'll go back to bed.

Please keep me in your prayers.

Jim