Penny & Irv - June 2010

Dr. Koteen just called and he consulted with the doctor/professor from the Mayo Clinic. Mayo is where the most research has been done on autoimmune pancreatitis. Anyway, that doctor said that Irv should be treated just as if he has autoimmune pancreatitis even if his IgG4 was normal.

First, the bile stents need to be removed via another ERCP surgical procedure. Irv wasn't sure, but a CAT scan will be done either before or after or both. Then the special steroids that work on strictures will be used to try and resolve Irv's symptoms.

Dr. Mastrangelo, the surgeon, is out of town this week so he will be consulted on Monday and Dr. Koteen will get back to Irv on dates for procedures, etc.

At this point we are ready to try anything to help Irv feel better. He is just not "normal" and we hope this will really help him get better. Since he has all the symptoms of autoimmune pancreatitis we are glad the specialist said to do what we hoped would be done. (Did that make any sense at all?) So, hopefully, sometime next week we will have a plan in place for this treatment regimen.

Please all think really strongly about this being the right thing to do! Then it will be the one we are wishing for.

Love to you all;

Penny

Penny & Irv - June 2010

Hooray! My Oncotype DX test was 5. Meaning that I have a 5% chance of the cancer returning with or without chemotherapy. Even if I had lymph nodes to stage the cancer - they were all taken with the previous surgery in 2000 - the score is low enough that if I was lymph node positive it would still mean that I didn't have to have chemo. What a relief.

Irv, unfortunately, is still having ups and downs. He had another episode of acute pancreatitis last Saturday which meant another trip to the emergency room. His liver function tests had returned to almost normal when last drawn on June 4. But, June 12, with the pancreatitis they were all sky high again! The gastroenterologist had another set of liver tests drawn today to see how they are doing and put him on another antibiotic. This is so frustrating. I wish there was someone who could oversee all this and give a diagnosis. Irv has seen so many different doctors, with different and/or similar symptoms we now wonder if anyone knows all of it - in one brain, one doctor, etc. We both hate this to infinity and beyond!

Now, if the weather would Please, Please, Please get better. We have teaser hours, not days, and now a thunder storm is brewing if the sky is any indication. Plus, we did try to go camping on Monday up to Big Lava Lake. That afternoon wasn't too bad, a little windy. Then Tues it started to cloud up, sprinkle, then rain, then SNOW! By Wed morn we had about 1 inch on the picnic table. The dogs were filthy, we were cold and so we packed up and came home. The temp when we left the campground at noon was a balmy 36º. What kind of crap is that?

I will begin breast reconstruction in late July. I hope to have my left great toe fixed by then. At least the deductibles are out of the way so we are "free" until Nov. 1. The fact that I'm writing checks totaling $25,000 for bills accrued just since April is very demoralizing and hateful and awful and horrible.

Love to you all;

Penny

Penny & Irv - June 2010

Well, Irv does NOT have autoimmune pancreatitis. His IgG4 was normal. That is the definitive test. His liver enzymes also are returning to normal though they are still slightly elevated.

Now, no one knows why he got to sick or why his liver bile ducts closed up. Modern medicine, right? Insert swear words here: ________________________ It is so frustrating. He was so sick. Where do we go from here?

Some famous doctor/professor is coming to town for a lecture series. Dr. Koteen, the gastroenterologist, knows this man and plans to discuss Irv's case with him for any additional insight. Unless he learns anything new Irv is just to continue with the plans to remove the bile stents in late July. Then he will have another CT to compare to the prior one. And we will hope this mysterious ailment will not return.

Boy, do we feel good. NOT! Irv does feel almost normal right now. He occasionally suffers from the itching, but it isn't debilitating, just irritating. His stamina is almost back to normal. His appetite is good and he has stopped losing weight, even is gaining a little.

Tomorrow he sees the general doctor/PA about his diabetes. The glucose medicine he is on appears to be working well. He still his some high levels, but only once had a really low one. We are assuming the dosage will be changed or a different drug will be trialed. Since his liver tests are back to normal there is another type of drug that he can now take - the ones that work on the liver to reduce the glucose.

This lack of a diagnosis is almost more scary. We are waiting for another crisis to appear - again without any diagnosis. Then what?

I guess we can just be thankful he is better. He really needed the stents to resolve the jaundice. But will the jaundice return when they are removed? ARGGHHH!

Anyway, perhaps our constant emails of medical problems will be really reduced! I bet you are all ready for that. I'm ready for normal life to return.

Thanks again to you all for the constant support!

Penny

Penny & Irv - June 2010

Dear All;

Finally; the last crappy surgery drain has been removed! Tomorrow would have been 3 weeks with the damn thing. What a relief! No getting into the hot tub for a few days until the hole from the drain tube is healed. Plus, the incision still needs a little more time.

I asked the physicians assistant if all mastectomy incisions/scars were so UGLY! She said they were. When I finally can start the reconstruction (end of July) that will help it not be so disgusting. Plus it is raw and red and pinched. That will all be filled out with reconstruction. I sure hope so because this really isn't what I expected. In all my years working in medical related stuff I've never seen a mastectomy scar before. Believe me, it isn't pretty. The alternative would be that I still had cancer so I guess I can live with it, but honestly, there should be a better way! Plus, the people all say that I did have previous radiation and that accounts for quite a bit of the ugliness. The skin just isn't like "regular" skin. I'm assuming that means that if I'd just had a mastectomy and never had radiation it would somehow look nicer. NOT! I can't imagine that.

Meanwhile, we are both doing well. Irv should hear sometime late this week about his laboratory workup for the autoimmune pancreatitis. I see my oncologist on June 18 for the chemotherapy decision. This waiting is becoming intolerable.

Our weather was really nice yesterday and we drove up to several campgrounds and Little and Big Lava Lakes. Took about a mile or so hike along the shore of Big Lava. The dogs had a marvelous time and had to go swimming about 10 times. Today we have clouds and the threat of rain but so far none. It is warmer, almost 70º. We were beginning to think it would never get that hot again around here. Usually by now we are closer to 80º regularly.

Love to you all and I'll keep you updated when I have anything to say.

Penny

Dad's Assaying Experiments

I've been looking over some of Daddy's assaying experiments recently. He used to find precious metals in the well water from their home at 2904-1/2 North Spruce; from a couple of wells at Kerrin and Dave's place outside of Vale, among others. His notes are a bit cryptic at times, but remarkably complete all the same. He lists the ingredients used in the assay, as well as the method employed to "get there."

In one, he exposes a daily practice of his more than he may have intended. Dad joined the LDS Church in 1977, but I don't think he ever really gave up his daily dose of coffee. I recall seeing empty coffee cups from the many restaurants in LaGrande well after his baptism, and it always made me giggle. A minor indulgence by a Major Dude! Anyway, in this instance, using the typical scrap of paper, he lists the recipe, the method, etc., including an unusually indifferent and inaccurate measurement of some d-tartaric acid: a McDonald's stirrer! From my memory I saw those empty coffee cups for the first time in 16 years, and I giggled a bit.

Penny & Irv - June 2010

Dear All;

Irv saw the specialist yesterday, a gastroenterologist, to see if he has autoimmune pancreatisis. From what Dr. Koteen said, and from what we read about it on the internet, Irv surely has an almost "classic" case. It has only been a diagnosable autoimmune process since the mid-90's. It is a very rare diagnosis, and as with Irv, it is not thought of until all other testing and procedures rule out cancer! (Irv did need the bile duct stents placed during the ERCP no matter what.) If the gallon of blood work drawn today proves it, Irv will be treated with steroids. The process responds extremely well to corticosteroids taken over a 4-6 week period. Some patients require an additional series of steroids later, but most do really well after only one. Very rarely a patient will need to be on long-term steroid therapy.

Time will tell what is going to happen to Irv. The doctors are STILL not ruling out pancreatic cancer.

Today I saw my surgeon and really wanted the last drainage tube and bulb to be removed, but I'm still having too much fluid produced so I have to wait another week. RATS! A big adhesion is forming under my armpit, but until I have reconstructive surgery it isn't considered a big problem. One 2-3" area of the incision isn't healing very quickly, but that is probably due to the radiation damage. Just not enough good blood circulation to the skin. RATS again. So, on it goes.

The Oncotype DX people called today for my okay to proceed with the testing to determine if chemo is necessary. They needed permission since I might have to pay about $900 myself. I okayed the test, then the lady asked if I might be eligible for a co-pay stipend from a patient advocacy group. Did we make less than $72,000/year? YES! She is sending the paperwork to verify our poverty status and then I won't have to pay the $900! Yahoo! I wish more of the medical profession helped out people who don't have a lot of income. I think they get penalized the most, and helped the least! Only our oncologist's office called to see if they could help. At first I thought we wouldn't qualify, but now I'm not so sure, so I'm going to ask next week for anything we may be able to get. (I was basing my assumptions on the federal guidelines for food stamps, etc. and we do not qualify for those. Medical income levels must be much higher.)

Anyway, we probably won't have much more to say for a couple of weeks. Again we wait, but at least the waiting isn't for doomsday, but just further treatment options. If our rotten weather would only improve both Irv and I would feel better mentally.

Thanks again for all the support, calls and cards. It means a lot!

Penny