12/28/11

I swear I've talked to every "bean counter" in the Pacific Northwest.  After all that, I'm told by Kaiser that my Senior Advantage Medicare will cover any procedures that I need in Seattle.  What wasn't I told this a long time ago ? ? ? ? ?    Anyway, I'm scheduled to see Dr Ngheim in Seattle on Tuesday and am also scheduled for some radiation next Thursday.  My tumor is so large that they're afraid of it bursting.  I'm guessing that waiting a week is hurrying up.  I need to not do any sky diving or sumo wrestling in the mean time.  Not a real problem.

I'll bring you up to date as this thing progresses. 

Jim

December 21, 2011

I had a PET Scan on Monday, and met with my Oncologist today.  Not great news, but it wasn't surprising news either.  The chemo has not done anything other than thin my hair.  My external tumor has grown considerably, but my internal tumors seemed to have either decreased or stayed the same.  Part of the explanation for that was that they were swollen during my previous scan, and that inflamation has gone down.

My ongologist is recommending my treatment continue in Seattle at the Cancer Care Alliance.  My doctor there is a specialist in Merkel Cell Cancer, and has some different techniques that could work.  The problem is that the "bean counters" at Kaiser have to be convinced that this is the correct solution so my life depends not on doctors, but on accountants - pretty scary, huh! ! !  I'm supposed to meet with my radiolgist soon to see if some radiation might partially shrink the tumors for the time being.

I'll keep you posted

Jim

11/27/11

I had my consultation with my oncologist on Friday.  I have several tumors that are under the surface of my skin that I can monitor easily.  One of the tumors all but disappeared, but the others have grown considerably.  The plan is to do my second regiment of chemo starting tomorrow, followed by a PET scan, and possibly some radiation.  I'm not feeling extremely confident at this point.

I e-mailed my oncologist at the Seattle Cancer Care Center to see how he felt about the procedure.  He sent me some studies on some new experimental cures for Merkel Cell.  The problem is he wants me to get Kaiser to pay the way, and Kaiser has told me that the one outside consultation is all that they would do.  I'm going to turn this information over to my Kaiser oncologist and proceed from there.

I'm feeling pretty good - just a little more tired than usual.

Jim

11/16/11

Greetings
Well, I thought the Chemo wouldnt' affect me, but it kind of sneaks up on you.  I've been having a severe pain in my neck (maybe related to something else), but that's seems to be okay now.  My hair is coming loose, but not falling out in clumps yet.  I was told if my temperature got to 101, I'd have 4 hours to get to the hospital if I wanted to stay alive.  Well - I felt warm Monday evening, took my temperature and it was 101.3.  Heather, my daughter in law rushed me to Southwest.  The temp was 103 by then.  They took blood samples out of every vein in my body and couldn't find the cause.  Temp went down - I stayed overnight - and they shipped me home yesterday morning.  I'm feeling decent now except I have to sleep on my back all night - tumors on my left side, and stiff neck on my right - Seven hours in the same position isn't totally comfortable for me.  I guess I'm sort of glad that I know the chemo is working - some doubt at first.
I've been able to go elk hunting (riding around in Jeff's SUV), and Jeff and I did get a nice elk (4/4).  We each put a bullet in it.
Life's not all bad - Joyce came through her surgery fine.  She had an incision large enough to take a cantoloupe size spleen out of her (which they did).  It's been a week now, and she's getting around (very slowly, but getting around). Thank the good lord for that one.  We've been receiving lots of food since my idea of cooking is oatmeal.  The Hockinson band directors brought over enough for a week last night.  Really Really good looking things to eat.  Glad I have my appetite.  We received food from our church and from friends also.  Thanks so much for all that.  My next appointment is a week from Friday with three days of chemo following that.  Please keep Joyce and I in your prayers.

Jim

Happy Halloween

I completed my first round of Chemo, and it was pretty easy.  Very little nausea.   I do notice a loss of energy already.  A short walk to our mail box (quarter of a mile), has me puffing a little.  Doc says let your body determine your amount of exercise, rest, work, etc.  I find myself at my computer at 3:00 in the morning and layed out on the couch at 3:00 in the afternoon.  I can live with that right now.  Joyce's surgery is now just a week away.  I hope to be strong for that.

Take Care
Jim

10/28/11

Had my first chemo yesterday.  Other than a lot of sitting around, it was a piece of cake.  Haven't felt any after effects yet.  I go in today and tomorrow again. 

The biggest obstacle is trying to remember everything we're told about my cancer and then again about Joyce's.  Hope we don't get mixed up and they cut out my spleen.  Joyce is in pain (sometimes mild and sometimes not).  Wish they could hurry that surgery along.

Take Care.
Jim

10/26/11

I'll make an entry tonight just in case I'm not feeling too well tomorrow.  My first chemo appointment is at 1:00 at Kaiser Interstate.  They're giving me carboplatin-etoposide just in case you might have idea what that might be.  I am looking forward to getting this started - might not be saying that tomorrow evening.  I will post as things progress.
Take care
Jim

10/21

News is not so good.  The cancer has spread throughout my body.  I'm only guessing on treatment at this point.  Keep me in your prayers.

Jim

10/18/11

Well - - - - - - - - - - Shoot

Thought I got rid of this nasty bug, but it decided to show up again.  Noticed small lumps last Saturday -  had my family physician check me out yesterday, and sure enough - it's back

I have a PET scan this afternoon to determine if it's gone beyond the lumps under my arm.  Had a chest x-ray yesterday and that looked good. 

Please keep me in your prayers - I'll update as I find out information.

Thanks
Jim

9/3/2011

Friends

Had a CT scan on Tuesday and got the results last evening.  My radiologist says nothing worrisome at this point.  There was a 3 mm lung nodule that they had not previously seen, but could have easily been missed on previous scans.  They want to do another scan in three months. 

I'm good with that information for a while.  I'll continue to pursue a healthly life style.  I can almost drink my special salad in a glass now without gagging.

Thanks for your support.
Jim

July 21st

I had a doctor's appt. with my family physician and Monday, and an appt. with my oncologist yesterday and both checked me out with no apparent reaccurance.  The normal wait time for a scan is three months after radiation, so I'm on hold until then unless something apparent happens.  I appreciate being in your thoughts and prayers.  I'm planning to do lots of biking, hiking, fishing, and of course work for the rest of the summer.  No news at this point is good news.  I'll keep you posted if anything happens.

Thanks
Jim

June 22nd

I finished my radiation on Monday.  Got a pretty good sunburn going which is supposed to start improving in a week.  I can finally swallow with minimum discomfort.  Lost 13 pounds over that (plus my new healthy diet).

It's wait and see time now.  I've got apppointments scheduled with my Kaiser cancer people.  I'm working on the Seattle thing also now.

If anything changes, I'll post itl

Thanks
Jim

June 4th

Just a quick update - I have two weeks of radiation left.  I still have pretty much all my energy.  Good thing cause the next two weeks are a zoo with school getting out.   Besides my sunburn (which isn't too bad), I have a sore throat from the radiation.  Swallowing hasn't been much fun the past couple weeks.  I'm avoiding scratchy things and that helps a lot.  Sure hope they get that nasty little bug this time around.

Jim

May 24th

Not much has changed, but I thought I'd update this.  I'm now in my third week of radiation and the most painful part is still the drive to Portland (especially right now because the river is at flood stage and there's extra bridge lifts which really messes up the traffic).  I'm starting to be a little sore from the sunburn (caused by the radiation)  That didn't happen until late in the procedure last summer, but I think my feeble little mind figured out why.  Last summer I was being radiated on a place where I was well tanned (my arm).  This time it's under my arm where the sun has never hit. 

I still feel good - fishing, cutting wood, working in the yard, and even doing my duties at the store.  That's it for right now except for the fact that I did catch a 25 pound chinook last Monday (Just thought I'd throw that in)

Jim

May 10th

Not much new to report.  My infection is gone.  Kaiser did my "filming" (set-up) last Friday, and I started radiation yesterday.  I do that now five days a week for six weeks. The worst part is the drive to Portland.   I feel really good right now - been working in the yard, walking, biking, and even spending some "Music World" time.  The question I get is why do I work?  Simple answer - I like to work and I feel good when I accomplish something.
I won't add to this blog now until something changes.  Thanks for tuning in.
Jim

5/4/2011

My infection has got enough better that they did a CT scan today.  I was tattoed (should fit right in in Portland) and told to come in Friday for filming(whatever that means).

Radiation starts on Monday (every week day for six weeks).  I've got that drive to Interstate Clinic pretty well nailed after six weeks of it last summer.  I'm anxious to get started and even more anxious to get finished.

Things shouldn't be very exciting for a while.  Thanks for keeping up with me.

Jim

April 30

Infection is starting to clear up - didn't have to spend the weekend in the hospital - Hallelujah
Jim

April 28

I'm feeling pretty good  -  BUT  -

My infection spread slightly so my surgeon put me on a stronger antibiotic.  If it doesn't get better by tomorrow, I get to spend the weekend in the hospital hooked up to an IV - Oh goody - hospital food ! ! !

My ultra-sound just showed a buildup of fluid.  My surgeon drained some of that this morning.

That's it for now

Jim

April 27

Oh Great ! ! !
The area where they removed the tumor is now infected.   I discovered that yesterday at shower time.  My doctor put me on an antibiotic for ten days.

I had an ultra sound this morning make sure the puffiness around my incision is fluid.  I find the results of that tomorrow.

I met with my radiologist this morning also.  We have to delay the radiation now until the infection clears up.  I have a CT scan scheduled for next Tuesday.

The infection has caused me to feel like I have the flu.  I felt terrible last evening, pretty good this morning, and now am not feeling very good again.

Signing off
Jim

4/21/11

I spent the last three days in Seattle - mainly for a visit with  Dr Paul Nghiem at the Seattle Cancer Care Alliance.  This was for a second opinion and was approved by Kaiser Permanente.  Kaiser will not pay for further meetings with Dr Nghiem, but I was put into his research group and they will continue to work with me.

Dr Nghiem seems to be the authority on Merkel Cell Cancer on the west coast.  He has 700 patients. I would assume mostly on an advisory capacity.

Our main question was "Chemo and Radiation or just Radiation alone".  He felt that at this point chemo could possibly do more harm than good.  I haven't discussed this at Kaiser yet, but it made sense to me.

We asked him about a mushroom study done at Bastyr University in Kenmore WA, and he said he's heard some positive things about that and it certainly wouldn't hurt to take mushroom capsules.  He gave me a starter supply.

They took about about a pint of blood samples and with that will develop an antibody base line for me.  They can tell then from blood samples in the future if my cancer has reappeared elsewhere long before a pet or cat scan would do so.  Hope I understood all  that correctly.

The bottom line is I have about a 50/50 chance of getting this stopped with my current surgery and radiation treatments.  If it appears again, then we go after it again.  The hope is it appears in an operable place.  It could appear anywhere on the body (including my brain - and that would not be good).

I see my radiologist at Kaiser next Tuesday, and I would assume we'd get the radiaton started immediately.

Signing off  -  Jim

April 17, 2011

In a nutshell, I'll bring you up to date on my Merkel Cell Carcinoma.  Merkel Cell is a very rare cancer (1500 new cases a year in the entire U.S.) and very aggressive (described to me as melanoma on steroids)

My first encounter was last May when I noticed a spot on my arm that was growing.  I had a large chunk of skin (down to the muscle) removed, a skin graft put in place and 30 trips to Interstate clinic for radiation. 

All seemed well until after Christmas this year when a bump started appearing under my arm.  At first my doctors thought it was simply something that resulted from the lymph nodes that were biopsied with my initial surgery.  It grew fast and large in a small amount of time, and obviously was a return of the Merkel Cell Cancer.  The mass was removed at Southwest by a Kaiser surgeon on March 30th ( a four hour surgery- great nap ! ! !).  Since then, I've had a build-up of fluid which has been drained twice and a really funny feeling in my arm because of nerve damage.  If you've had shingles, you know what my upper arm feels like.

On the good side, I've been saving money on under-arm deoderant since my surgery (you probably didn't need to know that)

Thanks initially to my daughter-in-law, and then also to my Kaiser people, we found an expert on Merkel Cell at the Seattle Cancer Care Alliance - Fred Hutchinson Center - University of Washington.  Had a little trouble with Kaiser approving that, but again with the help of some great people, we pulled it off and will head up to Seattle tomorrow.

For those that are interested, I'll keep this updated as I find out new things.   I do believe strongly that there's a Higher Being involved in this adventure I'm about to undertake, and your prayers are so welcome.

Jim Detchman