Grandma Anna M. Isaacson's Doughnuts

Family,

I have missed the wonderful taste of grandma Isaacson’s (Anna Magdalena Grand Isaacson) doughnuts for more than a couple of decades.  Just recently I realized that aunt Bernice was still alive and that she used to make them with grandma.  I contacted her through Melissa (Bruce) Shepherd and was given the recipe below.  I plan to have us try this recipe over New Year’s.  The recipe below is for the raised variety.  I’m still working on the cake variety recipe as it was my favorite, especially dipped in coffee.

I used to go over the grandma and grandpa Isaacson’s with dad…we’d get there early in the morning and grandma would often have doughnuts for us, or would be in the process of making them.  We’d dip them in coffee and the taste was heavenly.  I can close my eyes right now and can smell the mixture of coffee and doughnuts.  Grandma also made a maple flavored creamy spread that she would put on the raised doughnuts.  It is no wonder that we have weight problems.

Unfortunately, Penny and Sig would go along on these doughnut trips (visits to grandma and grandpa’s house) and they would eat more than their fair share.  I would sometimes only get 5 or 6 doughnuts…  L.

They had an old toaster that when closed and in-use would resemble a pyramid with a square top.  The sides folded down to allow the bread to be loaded into the toaster.  Once one side was toasted, you would fold down the sides and flip the half-toasted bread over and finish the toasting process.  Once the doughnuts were gone, we’d go for the toast.  Spread thick with butter and dipped in coffee, toast was also heavenly.

I truly do not remember ever having a full meal at their home.  We always had doughnuts, toast and coffee.  If we had a full meal with them it would be at our house.  It may be that the full meal was always there but I didn’t have room due to the appetizers (doughnuts, toast and coffee).  Maybe everyone else had roast and potatoes or Scandinavian cod or reindeer…and I just sat at the table and had the appetizers?

Once uncle Sven moved over from the old country the reindeer were off of the menu, maybe that is the reason that we switched to merely doughnuts, toast and coffee.  Penny, Sig and I are living proof that one can live on appetizers alone…

Love,

Rick  

Here is the recipe for raised oven donuts.  Let me know if you have questions, and I will consult the family donut expert :)

In a large saucepan, bring just to boiling point 1-1/2 cups milk.  Remove from heat and stir in 1/3 cup shortening, 1/4 cup sugar, 1/2 tsp salt, 1 to 2 tsp nutmeg, 1/4 tsp cinnamon.  When luke warm, add 4-3/4 cups sifted flour, 1/3 to 1/2 cup whole eggs well beaten (which is the equivalent of 2 large eggs), and 2 cakes (or 2 packets) of yeast (softened in 1/4 cup luke warm water).

Beat dough until well mixed.  Cover pan and let stand in slightly warm place until dough is light and double in bulk, about 50 to 60 minutes.  Turn dough onto well floured board, turning over 2 or 3 times to form a soft ball.  Dough will be soft to handle.  Roll dough lightly, avoiding stretching, until about 1/2 inch think.  Cut into donuts with  3" cutter.  Place rings carefully two inches apart on greased baking sheets.  Brush donuts with melted butter or margarine.  Let rise in slightly warm place until double in bulk, about 20 minutes.

Bake in a preheated 425 degree oven for 8 to 10 minutes, or until deep golden brown.  As soon as donuts are removed from oven, brush again with butter or margarine and roll in granulated sugar. 

Yield:  2-1/2 to 3 dozen donuts

Here is the cake donut recipe as Bernice recited to my mom over the phone.  Bernice had to add in some specifics based on what she has done in the past.  The recipe is quite old and apparently does not contain all of the necessary info - at least not by modern cooking standards!  If you have any questions, let me know and I will check with Bernice (though it may cost you more donuts!).

Mother's Cake Donuts

2 eggs beaten

3/4 to 1 cup sugar - (3/4 works best per Bernice)

4 Tbsp shortening

1 tsp vanilla

1 tsp cinnamon

1/2 tsp salt

1/4 tsp nutmeg (optional)

1 cup milk (more or less) - (best to use 1 cup per Bernice)

3 cups flour

3-1/2 tsp baking powder

Beat eggs, add sugar and shortening.  Mix spices with flour.  Add to egg mixture.  Add more flour if needed.  Roll dough about 1/2 inch thick.  Cut and fry (oil temp 350-375?).  Use donut holes for testers.  Remove from oil and drain.

New York City 2010

Glenda and I have been married for 25 years. She is a patient woman, for sure. We decided to celebrate the occasion by making a kind of pilgrimage to New York City. Glenda's mother grew up here, and Glenda has always wanted to come. Since I've been here several times, I've long wanted to bring her. It seemed a good fit!

So:

We flew from Boise to Chicago;

Over Lake Michigan (Glenda had already located the "Floating Device" under her seat);

Took the obligatory "We're-on-a-flight-from-Haines-to-New-York" headshot;

We found ourselves alone on the shuttle-train to catch the main train into The City. Glenda is telling me "NO!" for the 1,000th time. I'll let you decide what the request was;

Some New Jersey blight and decay that Carly would make look chic were she to bring a client here for a shoot. This taken as we made our way in to Penn Station in the heart of New York City via train;

Punctuated by a view of the New York skyline (in the distance) where we saw waterfowl aplenty;

This is a typical expression as Glenda descends into a tunnel of any size. It may be an expression of terror. This route travels under the Hudson River;

Arriving Penn Station New York;

I've seen this phenomenon before and have tried to deduce how it happens: We hadn't been in Times Square for 30 seconds before Glenda knew that there was chocolate - and lots of it! - very near. Having found said cache she, with the Authority I've come to respond quickly to after 25 years, designated our next stop: the Hershey's Chocolate Store.

Glenda wasn't too sure about the subway. By the end of our trip, she was a seasoned veteran, correcting my errant choices for which train, which track, arriving where. What a trooper!

Our first night in The City, we went to The Lion King. It was wonderful. The puppetry alone made the show memorable. "Rafiki" had an exceptional 2nd Act, and the "Young Nala" and "Young Simba" were great! The best of all, however, was surely "Scar." He didn't revive the Jeremy Irons character from the movie, but made "Scar" an even more evil despot than Irons'. A great show.

Yup. It's the ball that descends to welcome in the New Year in Times Square.

Well, we gotta eat! Why not an Official Times Square Hot Dog for Glenda, and an Official Times Square Chicken-kabob for me! Mmmm. I gain weight just looking at them.

Although we don't typically look for occasion to be in the company of cartoon characters, we thought Stella would appreciate seeing Papa with Spongebob Squarepants.

Glenda's mother arrived in New York City 15 March 1948. According to the Borinquen ship manifest, she and her mother, Josie, went to 38 Riverside Drive to live. To get near there, we took the 79th Street & Broadway exit from the subway.

We couldn't find a 38 Riverside Drive address - the 30's ended with 37. So we took pictures of everything that may have been the 38 in the late 1940's.

This is W. 76th Street. A typical neighborhood view of the Upper West Side.

A lovely statue where W. 76th Street intersects Riverside Drive at Riverside Park.

Perhaps the building where Mom lived.

Or this. . .

. . .or this!

This we know: Mom went to school here at Public School 165, on W. 109th Street, just three blocks from Central Park's northwest corner.

They just don't make them like this anymore.

A sculpture dedicated to Peace in the square next to the Cathedral Church of St. John the Divine.

In St. John's.

Hahahaha! Oh! Man!! Glenda wanted to imitate George Harrison's pose on a Beatles album cover. She looks more distressed than anything else. This makes me think of Harrison's That's the Way it Goes:

"There's an actor who hopes to fit the bill

Sees a shining city of a hill.

Step up close and see he's blind, Wined and Dined,

All he has is pose. And that's the way it goes."

She's a poser!! Haahahaha (but pretty cute!!!)

St. John's.

Just below Lincoln Center for the Performing Arts. We had dinner with Nick Strommer at a place called Nick and Toni's. Good food!

Penny & Irv - September 2010

Dear All;

Just a quick note.  My blood work came back and all the liver function tests were now normal or near normal.

A hepatitis panel was done and somehow, somewhere, totally unknown to me, I contacted Hepatitis A.  I was positive!  I have never been sick enough with the symptoms of hepatitis to ever suspect I'd had it.  Irv had a hepatitis panel at the beginning of his illness and he was negative for all types.  I remember having one done right after Travis was born and I was so sick and I'd had a blood transfusion so the doctor did a hepatitis panel just in case.  It was negative.

I've given blood many times and donated platelets and never had a positive hepatitis test then either.  I haven't donated since the first cancer diagnosis so I must have gotten it during the last 10 years.  But, how and when?  I'm just shocked.  Maybe it was false?

It was my regular doctor that called today not the oncologist.  I wonder what he will have to say about it all?

I AM NOT contagious!  I had it in the past, not currently.

Irv finally has a colonoscopy tomorrow.   He is not happy with the preparation process, especially not being able to eat at all today.  At least it is scheduled for 8:30 am.

That's all for now. 

Love to you all;

Penny

Dylan & Heather Are Married!

We left for Portland on Thursday, 19 August 2010, mid-morning. Glenda and I were "celebrating" our 25th wedding anniversary and, although superficially this sounds like a bit of a bummer, we were thrilled to be doing so. That evening we were in the temple sharing the session with Heather as she received her endowment, and although it could have been just another temple session for some, for us it represented a major milestone not only for Heather, but for Dylan and, by extension, for us as well. Dylan had chosen wisely (oddly, Heather, despite all appearances, must be a bit daft having agreed to his proposal!!), and our being together in the temple for the 6:00 p.m. session was the first step that would culminate in their sealing the next day. Even spending the night alone on our 25th anniversary wasn't appealing enough to miss it.

We were given a very nice two-room motel suite where Glenda and I shared a king-sized bed in one room while Dylan, Simon Jones (Dylan's Best Man) and Bradley (Dylan's roommate) shared a couple of queen beds.

En route, traveling with Carly and Shem and their girls, Stella's foot and lower-leg began to swell dramatically (click here for Carly's version). It looked just like what happens to Glenda and Carly's mosquito bites so dismissed it until we arrived in Portland and it was not only quite swollen but very warm to the touch. The kids took her to the hospital ER where she was given some antibiotics that helped quickly to get rid of the infection! Where did that come from? Anyhow, by Saturday she was much better and ran about the Baker City reception for Dylan and Heather as if nothing had ever been amiss.

On Friday, Carly and Dylan left early (around 8:00 a.m.) to take some pictures prior to the ceremony. We met them around 9:30 or so, and joined Heather's family, the Harstons, for more pictures. Carly is amazing as a photographer and immediately took charge of a large group, directing them from place to place, where to stand, how to stand, etc. Her little frame seemed to swell with authority while her voice achieved a timbre of brass that not only cut through the noise of the very large fountain very close by, but silenced the crowd and compelled them to their stations. She is wonderful! We've only seen a couple of the pictures but they are wonderful. Such as:





Look how the girls seem to be floating in mid air - as if Heather is The White Queen and Amber Mozina (aka Mo) and Caitlin Lamb (aka Clamb), her bridesmaids are The White Queen's hench-women. Carly had them jump straight up, stiff-legged. Apparently it took several attempts to get this photo, but I think it was well worth it. The last photo of Dylan has him looking like some kind of celebrity dressed "to the nines." A good-looking young man, I say.

The ceremony in the temple is quiet and reverent. Many of Heather's family were there including all her older siblings and their spouses, her Uncle Tom and Aunt Vera, and her grandmother Harston. Carly, Shem, Glenda, and I represented the Isaacsons, and Jason & Stacy Bingham, Simon Jones, and Bradley joined us as well. The two of them came in, looking lovely, and listend whle a Brother Richardson offered some counsel and advise - almost none of it anyone can remember, sadly. I did take away his suggestion that if they wanted their marriage to endure and grow more rich each year, they needed to focus on each other and not themselves. I've surely found that when I've forgotten myself wanting things to be good for Glenda, and she doing the same for me, we each come away with much, much more than the sum of the sacrifice. Well, they kneeled across the alter, joined hands and Brother Richardson pronounced blessings and promises through the covenants they made with God. It was short, sweet, and moving. I was fine, emotionally, until Simon stepped up to congratulate his friend. Dylan wrapped his arms around his Best Man and kind of fell apart. That did it, and I was a bit gone - but only for a short while. We all made our congratulations to the newly weds and out we went. In the foyer, Stella and Olive were being well-tended by Heather's roommates; we were all reunited and welcomed Dylan and Heather as they came out of the temple. More pictures, more congratulations, and we were off.

We took the groomsmen and three of Dylan's friends (who showed up to the temple too late), as well as the Binghams out to lunch and made our way slowly north for the Enumclaw reception. The traffic was terrible, especially coming out of Portland and going into Fort Lewis and Tacoma. Whew! I hate that traffic - and most of the cars carrying only one person. It's maddening.

The Enumclaw reception was very enjoyable, the Harston's making a very good show. They didn't organize a formal reception line, which was a wonderful relief, and we milled about introducing ourselves and being introduced. After a short while, their bishop came by - he is an old friend from La Grande, Eldon Berry. He recognized me, of course, and I him. We visited, caught up the many years since last we visited and it was a good reunion. He comes from a very strong family and they were a wonderful influence upon me as I was growing up.

About 40 minutes into the reception, Heather's older brothers set up a cable with a pulley and made a Zip-line with one end of the cable connected to a tree, about 30-feet up, and the other attached to the hitch on the back of their pickup. Even the bridesmaids went down! It was fun.

Glenda and drove from there to Kennewick where we got a room for the night. We drove home and made final preparations for our reception at the Crown Courtyard in Baker City. All of Glenda's and Carly's planning made the thing come off without a hitch or worry and we followed the same template as in Enumclaw with no formal reception line. We enjoyed about 100 guests and lovely weather, despite a little bit of a strong breeze. The new couple took a room at the Crown Courtyard and left for their honeymoon the next day to Wallowa Lake for 5 days.

It was a tremendous weekend. I thrilled to see them become husband and wife, although were I to plan it they would have waited a few more years. But, inasmuch as Glenda and I raised Dylan to think and act for himself, and Glen and Diane seemingly did the same with Heather, it should come as no surprise that they would actually do so. It's a bit irritating that they did so, but not surprising. They make a lovely couple, and seeing them together creates as hopeful future for them. Today all is rosy, but that will wear off soon enough. Dylan has inherited my impatience, and hopefully Heather will be able to cool him down as well as Glenda has me. They will make it well I'm sure. They will make concession here and there, and will find things about the other that they might have changed had they known it earlier, but this is nothing new to any marriage. Surely they can weather the storms ahead and exercise some faith in each other, themselves, and the promises and blessings given through their covenants. We will certainly entertain them as best we can and support them always. We love them both, and are thrilled to have increased our family with one as lovely in spirit as is Heather.

Penny & Irv - August 2010

Dear All;

Yesterday I had routine follow-up with my surgeon and oncologist. Dr. Kowalski said I was healing fine and everything looked good. (What was he supposed to say? "OMG, I did a horrible job on you!" Ha!)

Dr. Kornfeld, the oncologist, didn't go so well. My liver function tests were quite elevated. Since they were fine in May when I had the mastectomy there are three possibilities:

1. The new anti-cancer drug Aromasin is causing the change.

2. The herbs I've been taking are causing the problem.

3. OR, there is another factor as yet unknown.

I feel just fine. Not all the test results were available yesterday. I'm supposed to call Dr. Kornfeld by Tues. if he doesn't call me with further instructions. Right now I don't know what will be happening. I admit to being more than a little concerned. So keep those good thoughts coming!

Everyone was most impressed with my new boob and how it looked just like the real one. It was a hot day and that prosthesis is HOT as well. It is made of some gel like material so didn't "breathe" at all and I got quite sweaty underneath it all. Dr. Kowalski wasn't as concerned as the "boob lady" was about not wearing it and the bra all the time. He said to just be sure that if I start to feel any neck, back or shoulder pain to wear the whole thing for a few days and see if it helps. It could just be that I strained the muscles doing something else. I haven't worn anything since May and don't feel lopsided, let alone painful. I hope it won't become a problem.

Love to you all and again, thanks for so much support through out this ordeal. I guess it isn't quite over yet.

Penny

PS: Irv is feeling entirely well! That is a very good thing!

Penny & Irv - August 2010

Dear All;

As of today I am the proud owner of a new left boob.  Plus two bras that are very pretty, as well they should be as they are really spendy.  I'm glad I don't have to pay for these.   Well, in a way.  Since we have paid out a fortune this year for everything else we are both into our "free" care.  The lady who fitted me for the stuff said that most insurances only approve 2 bras per year, one prosthesis every two years.  (Medicare pays for 6 bras per year.  Not sure how they handle the "boobs.")  My sister-in-law Debbie said she say a slogan for this years' Susan G. Komen Race for the Cure:  "Yes, these are fake.  My real one(s) tried to kill me!"  I love it.  As I have mentioned I inherited my mom's monster boobs.  Because of that I didn't have a lot of choice in bras.  Lynda, the boob lady, said a company is coming out with softer, more comfortable bras in September.  I tried on the largest she had and it wasn't nearly big enough.  Thanks Mom!  She will call me when they become available.  I would like to get a couple, even if I have to pay for them.  Since I haven't worn a bra for 10 years, since the first cancer surgery, these fairly rigid bras are kind of off-putting.  I wasn't concerned about going braless now, but Lynda said that since I did have a larger single breast that eventually I would develop spine and shoulder discomfort.  Hmmmm.  I see the surgeon on the 20th and I'll ask him as well. 

Irv is still feeling very well.  He has been really busy around the house doing chores.  All our wood for this winter he has split and stacked.  We have very little left of our store so he has ordered 3 cords from a wood broker here in La Pine.  The guy delivers rounds for free.  The forest service must give these guys access that the regular people can't use.  The areas we have surveyed on the open areas available are pretty bare.  We don't mind cutting smaller trees, they don't need splitting, but even small ones are gone.  There is so much beetle killed trees around we wonder if that is available to the brokers and not the general public.  Rats!

With my leg still in a non-weight bearing cast I can only watch Irv work.  Plus send him into the garage several times a day for stuff.  Poor guy.

That is all for now.

Penny

Penny & Irv - July 2010

Dear All;

Irv has been on the steroids since Saturday and so far not feeling any ill effects.  His glucose levels haven't been out of control and he is still feeling quite well.  Whatever this mysterious illness he had (has) appears to have left his body.  All the household chores he had been putting off like staining the huge decks and railings, wood chopping and splitting and stacking, weed-eating, and poop patrol of the dog kennels, etc. he has been doing without being exhausted after 5 minutes or less of work.  Hooray!

I got the cast on my left foot and lower leg on Monday.  Having to use this knee scooter instead of crutches (because of the mastectomy) is a real pain.  I need Irv's help to do just about anything except roll around our - thankfully - one story home.  It is still 3 steps up and down into the garage where our freezer and pantry are located.  So, good old Irv gets to make all those trips for me - several times a day.  He is now claiming to be the saint in this marriage!   Well, I never!  Meanwhile, the toe is healing well and no signs of infection or other nonsense.  I'm due to get the cast of on August 30.  Believe me, a major celebration will be held.  I just hope this works and I can walk, hike, & kind of run without ANY pain in that foot. 

I am so glad to report such boring information.  We have been thru hell and are so thankful for all your support.  My sister Kerrin was such a blessing when she came to care for me after the mastectomy.  Just having her here made me feel better.  If Irv hadn't gotten so much better my brothers were ready to come and do all those chores Irv has just completed.  What would be do without loving family and friends?

Love to you all;

Penny

Penny & Irv - July 2010

Dear Everyone;

Dr. Quinn was less than impressed with my "non" boob.  The previously irradiated skin is still very hard and not anywhere close to being soft enough for expansion.  So, the other option is a major operation where the rectus abdominus muscle is severed at the bottom of the abdomen and tunneled up under the skin to the breast area.  Excess skin from the donor site (muscle) is used to cover the area being reconstructed.  This surgery requires 5-7 days in the hospital.  The chance exists that the muscle will not retain its blood supply and die, leaving a real mess.  The other breast would be reduced in size at the same time.  Since my irradiated skin is not doing well now, I don't want to chance it doing even worse after such a big operation.  Neither of the two plastic surgeons in Bend do this difficult surgery any more due to one's bad back and the other's bad neck!  The surgery requires a lot of bending over forming the tunnel under the skin of the abdomen get the muscles up to the boob.  That means I'd have to go to Portland or even Seattle for this surgery.  I said NO!   This can be done in years to come, not right now, if I change my mind.  It is kind of a relief as we were running out of time to get this all done before I had to pay another $10,000 deductible starting in Nov.  It really doesn't bother me too much to be a right sided uni-boob.  I will get a mastectomy bra and prosthesis to wear when I need to be seen in public on a formal occasion.  Otherwise, get used to seeing only one breast under my T-shirts!  Right now I use undershirts with a shelf bra that I stuff with socks.  (Irv notes that he hasn't grabbed a handful of sock since junior high school!  Ha, ha.)  Then I layer some shirts over it and it is quite convincing. 

Irv sees the doctor on Thursday and should begin steroid treatment.  Right now he is feeling perfectly well, so we will see if he has to undergo the treatment or not.

Love,

Penny

Penny & Irv - July 2010

Dear All;

I had my toe surgery on Wed. It went well, but this non weight bearing nonsense is tooooo much. I have to scoot round on a knee scooter. Our toilet areas are not invalid friendly!

Irv finally heard from the gastro docs yesterday. He goes in on Thursday next week to start the steroids for autoimmune pancreatitis. I hope we will hear about the CAT scan and blood work results then.

I see the plastic surgeon on Tuesday. I hope he will say I can begin the reconstruction process. It has to be completed by Oct. 31 and I'm sure it will take several weeks of expanding the device placed in the breast area. I don't know when the reduction on the other side will take place - at the same time the device is implanted or when the final prosthesis is put in place on the mastectomy side. Irv is still hoping for "perky" boobs. We'll see.

It is very hot here. Into the upper 90's. Thankfully it cools off at night so we don't need the air-conditioning 24 hours a day. It is nice to get some "regular" weather after such a long cold spring and early summer.

Thanks again for all your support. At least we have entered a fairly calm stage of this process. It is a mental and emotion relief!

Penny and Irv

The Two Granddaughters

Stella Marie Carlson, 19 October 2007.

Olive Anne Carlson, 13 July 2010.

Both only hours old. They just might be sisters!

Olive Anne Carlson

13 July 2010, 9:20 a.m. MDT, Ontario, Malheur, Oregon, USA. She is beautiful!

Of course, Nana and Papa had to treat Stella to some treats:

Penny & Irv - June 2010

Dear All;

Irv had the repeat ERCP to remove the bile duct stents today. It went very well. He is having no pain, just grogginess from the anesthesia. The surgeon did take some biopsies of questionable areas and some brushings of the duct itself.

Irv is supposed to have a repeat CAT scan in about week, which we are supposed to call about tomorrow. Then the following week, finally, have his appointment with the gastroenterologist to start the steroid therapy.

I have a pre-operative appointment with the foot surgeon on Thurs. July 8 to get the left great toe surgery scheduled. (This is the surgery I was planning before the breast cancer diagnosis. I saw that surgeon 2 days before the diagnosis and after that he wouldn't talk to me until the cancer stuff was done.) Anyway, we will try and get Irv's CAT scan scheduled for the same day. It is an 84 mile round trip to Bend for these appointments so if we can group them it is really nice.

Kind of nice to not have gloom and doom in an email isn't it? We are certainly feeling more optimistic. I have the toe surgery and the breast reconstruction plus breast reduction on the existing breast coming up this summer. Those will require some discomfort and recuperation, but at the end of the summer we are hoping this ongoing nightmare will be just about over! Irv and I are really looking forward to that.

Love to you all;


Penny

Penny & Irv - June 2010

Yesterday Penny saw the plastic surgeon. He said that it appears he can't start his work for 4-6 weeks. There is still fluid present under the scar and the tissue is still too stiff. Dr. Quinn feels that will resolve in that time frame and then the reconstruction can begin.

Penny also started on her hormone therapy, an aromatase inhibitor called Aromasin. The pill costs over $10.00 for EACH one! Thankfully, I only pay $1.67 each, after my insurance pays. I think I take this one for at least 5 years, perhaps longer.

Today, Irv saw the gastroenterology surgeon Dr. Mastrangelo. He hopes an ERCP can be scheduled for Tuesday so the bile duct stents can be removed. As soon as a CAT scan can be scheduled after that Irv will be ready for the steroids to combat autoimmune pancreatitis - which, if there is any karma in the world, will resolve his symptoms.

Again, we wait, but at least with plans in place for future treatments.

Finally we had a HOT day - almost 80º. Beautiful Central Oregon day.

Penny

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

Penny & Irv - May 2010

Dear Friends and Family;

I saw the surgeon today and one of the two drains was removed. It was threaded into the surgical area about 15-18"! The whole area feels a lot better after that removal. I'll see him again next Friday to remove the last drain. He said the wound is healing well, not as good as if I hadn't had radiation 10 years ago, but still not badly.

I also saw the oncologist, Dr. Kornfeld today. He ordered the Oncotype DX on the tumor tissue. Results should be available in 2.5 weeks. I have an appt. with him at that time to decide about further therapy, especially chemotherapy or not. The test determines whether chemo will not only work against the cancer, but also if it will do any good to go thru the trauma of chemo. Evidently chemo can kill the cancer, but not for the long term. I guess that is why it costs more than $4000! At least it is available now. 10 years ago no such test was available to help me decide on chemo. I decided not to do it, and of course, in hindsight, I'm not so sure it was the correct decision.

Irv sees the gastroenterologist on June 3 to pursue the autoimmune aspect of his problems. The usual treatment for autoimmune processes is steriods plus who knows? At least he definitely does not have cancer! He also has to have the stents placed in his bile ducts removed! No one mentioned that until they called to say the appt. for the surgery was scheduled for July. They don't remove heart stents. Anyway, we aren't looking forward to this, but it must be done. We hope the treatments by the new doctor will have worked and the removal of the stents won't cause the blockages to reappear.

Like I've said many times: Where is Star Trek medicine when you need it? Irv thinks we should have Abby from NCIS handle our labwork. She can solve numerous really tricky hard questions in 1/2 to 1 hour each and every week.

Irv and I are feeling much lighter of heart lately. The extremely dire outcomes have gone away. We still have to deal with my therapies, but Irv won't have to have major surgery. His repeat ERCP in July is a day surgery procedure. He did get some pancreatitis, and it was very painful, but probably less than cutting open his abdomen. If steroid drugs will alleviate his GI problems that will be really good.

We'll keep you posted.

Penny

Penny & Irv - May 2010

Dear All;

Kerrin had to go home so we are struggling by ourselves. It was so wonderful to have her here.

We got the results of Irv's procedure in Portland at OHSU. No malignancy found! The abnormal area biopsied showed a proliferation of cells called "plasma cells." Plus elevated IgG. Those suggest an autoimmune process, meaning Irv's own body is turning on itself in a bad way. So, we are being sent to ANOTHER doctor, a gastroenterologist, to explore this possibility. Meanwhile, he experienced extreme pain and a fever of 101.8º F last night. His doctor sent us to the Emergency Room. They did an ultrasound of the abdomen, gave him fluids and IV antibiotics and lab tests. They found he had an acute pancreatitis. He was almost admitted to the hospital to continue the antibiotics and fluids, but his fever went down quite a bit and his pain diminished (well, why wouldn't it, as he had been given IV pain medicine!) so he was sent home. We got home at 0400 am and had to be back at his doctor's office at 8:30 am. He had more lab work done and another examination, plus more antibiotics. He is "okay" for now.

So, yes, 3 days after a mastectomy I'm driving Irv 84 miles round trip in the middle of the night! And then again this morning after hardly any sleep. Will this nightmare ever end?

Meanwhile, my doctor called with pathology results of the tumor taken with the breast on Thursday. It was exactly the same pathologically as the previous tumor 10 years ago, making them think it could be a recurrence of the prior cancer and not a new one. It was a smaller tumor at 1.4 cm vs. 2.2 cm for the previous one. That is really good. I see the oncologist on Thursday to begin the next phase. Meanwhile, I have two drainage tubes that have to be emptied a few times a day and the quantity of drainage measured. The volume has to be below 20 cc total each day for two days before they can be removed. I'm producing much more than that still. The doctor thought I'd have them for about 2 weeks. They are not uncomfortable so much as just annoying. The pouches attached to the drains make my chest look like an Alien is popping out of it. Sounds lovely, doesn't it? Pain wise I'm having very little and Tylenol keeps it under control when I need it.

That is about it. I'm still sleeping a lot and not doing much else except sitting around and reading or watching a little TV or I play a couple of word type computer games. Irv is reading, watching TV, resting or sleeping. You would think we were in our dotage, not early retirees. What kind of crap is that anyway?

Love to you all and thanks again a million times for all the support we have received.

Penny

Penny & Irv - May 2010

Hello Everyone,

Penny's surgery went well. Irv and I (sister Kerrin) are taking really good care of her. The surgeon said the type of cancer may not need any chemotherapy but will need to see the results of the testing on the tumor. They presented Pennys case to the Tumor Board, and Penny's oncologist is the head of this board, and their consensus was also that chemotherapy may not be needed. So we will see.

Penny has eaten and the pain pills are working, so we are happy about that.

We are already home, something that I as an RN knew happened, but as a sister, it pisses me off!! Not everybody has a nurse after major surgery!!

Thanks again for all of the support, and more news will come when it is available.
Love, Penny (and Kerrin who is writing this to help the old girl out......lol)

Penny & Irv - May 2010

Dear All;

Irv and I got up this morning at 4:30 am and quickly got ready to drive to Portland for his 10:30 appt. We got to the OHSU hospital at 9:30! The ultrasound went very well and he feels quite good afterward. We were able to drive right home - Irv even walked out of the hospital to the parking garage where the car was.

The doctor found NO abnormalities in the pancreas. Yahoo!! Once and for all we know that organ is fine. Whew! Pancreatic cancer is so horrible - what a relief.

He did find an abnormality in the "major papilla" area of the duodenum. From what I read on the internet this is an area about 7-10 cm from the pyloric opening from the stomach to the intestine. Both a bile duct from the liver and another duct from the pancreas empty into the duodenum in this major papilla. Biopsies were taken of this abnormality. We will hopefully know the results by the end of the week.

This doctor wouldn't commit to ANYTHING as to what this abnormality might mean. Surgery, benign, cancer, what? Nothing! He said he would be in contact with Irv's original surgeon Dr. Mastrangelo and they will discuss the outcomes and then tell us. So, we wait once again.

At least the dire threat of pancreatic cancer is gone.

I will know tomorrow afternoon what time my mastectomy will be done on Thursday. Kerrin, my sister, will be here tomorrow to care for me. I can hardly wait for her to get here.

So, again we wait for news and some final answers. Irv on the biopsies, and me on whether I'll need chemotherapy or not. I don't know how long that Oncotype DX test takes to complete, but I wouldn't start chemo until I was mostly healed from the surgery anyway.

At least progress is being made, even though at a glacial pace. To us, "modern medicine" is a misnomer!

Love to you all;

Penny

Penny & Irv - May 2010

Dear All;

Not much to say. Dr. Kornfeld thought Irv was still too jaundiced (yellow tinged eyes, skin) since it has been a week since the ERCP procedure. He had blood drawn to check his liver enzymes. Irv is still itching badly from the excess bilirubin. Irv got a prescription for another medicine to try for sleep. Ambien didn't work at all.

Also, it was hoped Irv would feel more energetic, but he isn't doing that either! AND, he has now lost 37 lbs. in less than 2 months.

All this adds up to continued concern that he has a pancreatic cancer. One encouraging note is that the cancer would be fairly small since it has been so hard to find/see with all these tests, even though it is obstructing his bile ducts. Surgical resection would be a definite possibility if that is the case. (He mentioned a 75% cure rate - a number I find very hard to believe.) Dr. Kornfeld said he has great confidence that the doctors at OHSU in Portland and the endoscopic ultrasound will be able to visualize the problem. (Then he said that the next step would be open up Irv's abdomen in a regular surgical procedure. What's up with that?) Pancreatic cancer is extremely difficult to diagnosis due to the location in the body. Plus, usually, when a mass forms it is a position that it doesn't cause the problems Irv is having, so by the time the cancer is discovered it has already metastasized to other parts of the body. So, the fact that Irv is having all this crap could be a good thing!

It is amazing to see the calendar and see that we have nothing planned until the 20th for my surgery! Then to Portland on the 24th for Irv's procedure at 0700 on the 25th. (Dr. Kornfled thought I'd be feeling good enough to go! All right, because I'm going.)

Love to you all and thanks again for your wonderful support! It really does mean everything to us. Dr. Kornfeld even commented that Irv and I didn't seem "wigged out" enough for all the shit that is happening to us. We just said that we had a lot of knowledge anyway, we'd do whatever was necessary when we ever got answers, and we had half the population supporting us. So, why get all upset about something until you HAVE to do so? (It helps a lot that we love each other to distraction and will do anything we need to do for the other person. That makes everything bearable.)

Penny

Penny & Irv - May 2010

Dear All;

OHSU called yesterday and the earliest they could do Irv's ultrasound was May 20th. Well, I'll be in surgery that day. Next available day way May 25th, so we took that. We have to go to Portland on the 24th as Irv's procedure is first thing in the morning at 0700. We will stay with his brother Roger in Newberg.

My sister Kerrin made arrangements to come stay with me (us) on the 19th, and can stay longer than the weekend if needed. We will have to decide how I feel whether I can go with Irv. I REALLY do not want him to go to Portland alone, even if Roger and Marilyn will be there to drive him to and fro and care for him afterward. After the ERCP he really wasn't himself until Friday, 4 days after the procedure. I doubt I could be away from him during that time, especially if the biopsies taken in this procedure are bad! (Always a chance, even though we are being much more positive that they will also show nothing!)

So, things are up in the air. BUT, we will deal with them. Luckily, we have so many of you to call on if needed (for which we are most grateful) that I am sure we will work it all out.

That's the news for now.

Love to you all;

Penny

Penny & Irv - May 2010

Dear All;

I have been too worried about my cell phone minutes, and additional stress in not in the picture right now. We have already used 352 of 700 with 17 days left. So, we upgraded to a 1400 minute plan and 10 unlimited friends and family. From now on please call us and we will call you whenever!!! No matter what service you have. What a relief!

I don't want to bring you all down, but:

I probably should have held back in my "no malignancy" headline. If you read the message completely, understanding all, you should have seen that we still have one more hurdle to leap. The endoscopic ultrasound, to be done in Portland as soon as it can be scheduled, COULD still show a cancer in Irv's abdomen. Specifically, the pancreas. The pancreas was NOT biopsied in the procedure done on Monday. It will be biopsied with the ultrasound.

We were so excited and happy and relieved that the really ugly area in his duodenum was just massive irritation, when it looked so bad in the pictures we were given, that I got a little too over the top. AND, the biopsies of the bile ducts are only positive 20% of the time even when a malignancy is present.

The last and best test is the ultrasound.

Irv is still itching, but less. He still is slightly yellow, so the bilirubin hasn't cleared yet. His abdomen is not nearly as tender as it was and he is more active.

I saw my surgeon today for my final visit before May 20. Had blood work done and an EKG of my heart. Because we are unsure of when Irv will get his Portland ultrasound scheduled, I asked my sister Kerrin, THE nurse, to come and stay with us for a few days and take care of me (and maybe Irv.) She graciously accepted and will schedule time off from May 19 until May 22 or 23. I will feel much better about the surgery knowing she will be here. Every doctor I've seen is so concerned about how I will heal since I had radiation for the first cancer, that having Kerrin here to monitor it all will be really comforting. Especially if Irv is still recovering from the ultrasound.

Irv and I feel much less stress as things have progressed and we have some plans in place. Stress is still present, but no longer accompanied by panic!

Love to you all;

Penny

Better, Better

From Carly -

I like to sing Beatles songs to Stella, only as lullabies. A few of my favorites (and Stella's) are Yellow Submarine, Let it Be, In My Life... etc etc etc. Well tonight I was laying with Stella in her new big girl bed (which I need to blog about- she is totally rocking the twin bed!) and we were singing songs.

I asked her what song she wanted to sing next, and she goes "Better better". I had no idea what song she was talking about, so I said "I don't know what one you mean, how about you sing it to me." I wish I could insert my mental photo of what her face looked like, but she semi reluctantly, almost nervously, said "mm, OK" and slowly started singing.

Fidgeting with her hands but with growing confidence she began... "Hey dude, a make a bed... a sad song, a make a better better better better!!" By the end of the "better"s she was singing with gusto. As you can imagine... Hey Jude.

I said, "Oh! Hey Jude!" She says, "Yeah! Make a bed song!" I said, "Oh, it's not 'make a bed', it's 'don't make it BAD!'" and we both started giggling.

I almost cried from laughing. I love her so much. We sang several abbreviated versions of Hey Jude... and you know what? That song is the perfect ending to this day.

Penny & Irv - May 2010

Dear All;

Dr. Mastrangelo called tonight at 8:40 pm to let us know that none of the biopsies taken on Monday showed any cancer.

He did say that we will still go to Portland, Oregon for the esophageal ultrasound, and a cancer could still be found, but that there is hope this is all just extreme irritation of his liver and duodenum. Irv is to start taking Prilosec and Mylanta in order to really reduce the acid entering the duodenum from his stomach. Dr. M. felt that the irritation might be due to excess acid.

The referral for the ultrasound was sent to Oregon Health Sciences University, where the procedure is done. Dr. M. stated that I had to have a mastectomy on May 20, so they needed to schedule the ultrasound before that. I certainly hope that will happen. OHSU is to call us to schedule it. Irv is still to see the oncologist on Monday. Dr. Kornfeld is a wonderful doctor and having him check Irv out is fine with us.

We are so relieved, as Dr. M. was not encouraging on Monday. There still could be a cancer, but at least for now there isn't!!

Thanks again for all your support. It means everything.

Penny

Penny & Irv - May 2010

4 May-

Dear All;

Dr. Kowalski called today and announced that my genetic BRCA (breast cancer gene) was completely NEGATIVE!!!

Yahoo! That means a single mastectomy, reconstruction at a later date.

The plastic surgeon said that because I inherited the monster boobs from my mother (thanks a lot, Stub! It's an Isaacson thing) that the reconstructed breast would not be similar to the existing breast. Well, I've been living with two dissimilar breasts for 10 years now and I think Irv and I can deal with it.

So, we are celebrating the nicest, best news we have had in a while. Going to drive up to Big Lava Lake today and check out camping spots. It is a beautiful lake, not too big as the name suggests, but has a forest service campground where we could camp and allow the dogs to run around a little bit. We fished there twice last year, and caught nothing, as per usual, but wanted to come back and camp as well. It is only about 30 miles from our house. We will take the trailer up and then Irv will go back and get the boat so we can fish, unless we decide to just fish from the shore. We did see other people catching fish from the shore so it is possible, maybe ever for us.

We did have snow, again, last night, so not sure when this camping trip will take place. Also, the lows at night are still hovering around 20-25º F. Brrrrrr.

Love to all;

Penny

Penny & Irv - May 2010

1 May 2010:

Dear All;

I've gotten several emails about our phone minutes. We have already used 1/3 of our minutes and have until May 23 to get another 700. If you have Verizon, we can talk as long as we want. On weekends and after 9 pm (our time) is unlimited, so call away during those times. If most of you are awake after 9 pm our time let me know and I'll call, or you call us. I do prefer live conversation! But every cent we spend is accounted for right now.

So, if you have Verizon let me know.

Otherwise, I'll send an email except for Travis and Casey and Grandma Lou (via Dianne) since Dianne doesn't do email!!

I'm cooking, or otherwise preparing, a storm of diabetes friendly foods for Irv in order to help keep his glucose down. Since the doctors all feel his higher glucose levels are due to the compromised liver and pancreas they don't want to treat it in any other way except diet. If it persists after the other problems are resolved then we all will get serious about treating the diabetes. We usually eat a well rounded diet, just too much of it! Plus both of us love our carbs.

We were just about wading thru piles of dog hair as Stella and Izzy are really shedding right now. I finally had some time free, both mentally and otherwise, to clean today. I had to empty the vacuum container twice! We only have a 1635 sq. ft home.

Both of us are hoping after Monday Irv will be diagnosed and perhaps on his way to recovery. What a relief that will be. Most of my upcoming treatments are decided and a timeline has been tenuously established. They should all firm up during this next week. The remaining BRCA genetic results should come this week. The only question left after surgery is the chemotherapy question, and that will be answered with the Oncotype DX test done on the tumor cells.

I'll keep you all informed whenever I know anything new.

Love to you all;

Penny


3 May:

Dear All;

Good news: Dr. Mastrangelo was able to place 2 stents in the common bile duct to allow the free flow of bile once again. His jaundice and itching due to the bilirubin should resolve in the next day or two. Since that is by far the worst of Irv's complaints that is really good news. If the itching stops, he will feel much, much better. As to why the duct was so constricted is another unanswered question.

Bad news: The pancreatic mass was visualized with the dye used in the ERCP procedure. The area of concern on the MRI is still an area of concern. Dr. M. found a large area in the duodenum that had a "friable" appearance and was quite abnormal. This area he was able to biopsy. He also did some bile duct brushings for pathology examination. (We have pictures taken of this area and compared to the very smooth tissue away from it, it appears very "angry" and lumpy and has white spots and loose looking whitish "zits" all over it.)

Bad news: Irv has already been referred to an oncologist, the same one I am seeing, Dr. Kornfeld.

Medium news: If the biopsy and brushings do not show anything concrete, Irv will be sent to Portland for an endoscopic ultrasound. This procedure isn't done in Bend. It is the "gold standard" for diagnosing malignancy in this area of the GI tract. We should have biopsy results by Wed. or Thursday which will determine if we need to go to Portland.

So, once again we don't have final answers to anything, except the opening of the bile duct. The question of some sort of a cancer is still uppermost in our minds. BUT, relief from the itching will make Irv a happy person!!

My surgeon called and I have been scheduled for May 20. When the BRCA test is finally done and we know whether single or double mastectomy, enough time is available on the 20th for either procedure.

If Irv needs to go to Portland we hope to get that done before May 20. Dr. M. said that it could take up to 2 weeks to get it scheduled so we will be cutting it pretty close. Our neighbors and my brother Tom, among others, can all be available if need be to get him to Portland if I'm not able. If this isn't the shits I don't know what is.

So, I'm barely holding it together right now. Trav and Case are ready to come here immediately, but really, there isn't anything they can do except sit here with us and feel upset. Casey is starting to be the actual bank manager at his own branch (now that his training is almost complete) very soon. Trav and Amy have an overfull life with the two babies and two jobs. Plus, I really don't want to entertain anyone or put on a good face. I may have to stay in my bathrobe all day, or lay in bed and read all day. Play my one computer game all day. Get the picture?

I'll let you know when I know.

Penny

Penny & Irv - April 2010

7 April 2010:

Okay, I had my annual mammo on 3/30. Radiologist calls today for additional films and ultrasound tomorrow at 2 pm. Good thoughts and vibes - send them on and pronto! It will be 10 years in July. What kind of shit is this? This is definitely NOT on the retirement plan.

Penny


8 April:

Dear All;

New detailed digital mammograms and ultrasound were inconclusive. Very luckily a biopsy will be done tomorrow at 12:15. (We leave Sunday for 2 weeks with the grandchildren.) Not sure when those results will be available. To me the new mammo films looked very similar to the original tumor. I admit I'm not doing too well with all this, and Irv is pretty scared as well. But, we are together and that means the most.

When I know anything, I'll let you all know. Please don't call as all I did with Casey and Travis and Edye and Tom was blubber on the phone. I KNOW you are all thinking positive thoughts and sending the good vibes my way.

Love to you all;

Penny


9 April:

Well, the biopsy went well. The surgeon thought he got two really good samples. Nice, younger doctor with a Phys. Asst. that was also great. If I need surgery I feel like they will be wonderful.

The mass is under the tip of the previous surgery scar on the outside of the left breast which is probably why I didn't find it before. I honestly don't check that fibrous scar tissue area well. It required me laying up on my side with a pillow under my back, arm stretched out and behind me for the ultrasound to visualize it. I was a real contortionist in order for the biopsy to happen!

No results until Tuesday. We will be in Spokane and they will call me there. Then I'll let you know.

I won't make any plans for surgery, if it is positive, until I return to La Pine by April 26.

I'm over the panic and sobbing stages, flirting with denial, but keeping it together pretty well - and looking forward to Paige and Keean taking my mind off it all!

Love to you all and thanks for your positive vibes, etc.

Penny


13 April:

Sorry everyone, but I have breast cancer again. Only option this time is a mastectomy as I've already had radiation, which is the normal follow-up to a lumpectomy.

Since Mom died of ovarian cancer they want to test for the cancer gene, BRCA, or some such. If it is positive then they will do a double mastectomy. Chemo of course. Not sure about reconstruction of the breast. Have to see a plastic surgeon. Also depends on the gene results. Don't want to reconstruct anything that might hide a future tumor.

We are enjoying our grandchildren immensely. Paige had her 3rd birthday yesterday and Irv and I, along with Great-grandma Huntsinger, got her a Dora the Explorer bicycle. She LOVED it! Her cousin tried to sit on it and Paige went crazy. So possessive!

There really won't be any more news until the 26th, when I will see the doctors again and plan the treatments.

Love to you all and thanks again for all your support.

Penelope


16 April:

Let's face it, I'm somewhat of a control person. So, strange house, major stress, no idea where anything is in the strange house, couldn't even work the video for the babies, major stress, dogs unhappy, NO sleep and anxiety up the kazoo, and again, major stress plus stairs and arthritic knees that turned into torture every step I took. All led to major meltdown and me sobbing hysterically in a corner. Amy's parents graciously and immediately and (most thankfully) without condemnation took over care of Paige and Keean. Trav and Amy very lucky to have such great people surrounding them.

Keean has been trying to crawl and today, according to Amy, finally mastered it! Sorry to have missed it.

I moved my appt with the surgeon up to April 22. My sis Edye found that a distant cousin has the BRCA gene (Mom's cousins daughter) so that is a possibility. Having a sis computer savvy and recuperating from knee replacement has been great - she found all the family info this relative has allowed to be freely used and is sending it to me so my Dr. can have it. I will still have the gene test probably, but we'll know later. That test does delay the surgery about a week, a fact that will weigh into the decision making process.

Our puppies are very happy to be home, too.

This cancer thing is such a nightmare for us. I'll try to keep any further communications to a minimum. If I could just win the Lotto (of course, you have to play to win) then the financial impact would certainly be alleviated.

Love to you all and thanks again for the mountain of support I've received. I'll keep you posted. I'll understand completely if you would like to NOT have any more emails. Just send me an email saying you want to opt out! (I don't know how to set that up automatically like the web sites do. Or even if it is possible.)

Penny and Irv


20 April:

Dear Everyone;

I had the BReast CAncer gene test drawn yesterday. My doctor put in an authorization request to the insurance company. He feels like they will and should approve it. Even though I have to pay for it myself due to the $10,000 deductible, at least it should go towards my deductible. The darn thing costs $4000.00!! Since people have been asking: What the results would determine is whether I'll have a double mastectomy or not. (If I am BRCA+ I'll have the double.) After all the paperwork and such is done the company in Salt Lake City will then proceed with the testing. It takes about a week after they start the test to complete it. So in about 2 weeks or less I'll know. Meanhwile, we are really getting a lot of points on our credit card - and that is at least one good thing.

See the doctor on Thursday to plan out tentative surgery dates. I still need to have my toe fused (by a podiatrist - saw him 2 days before the breast stuff started) and as long as we can get everything done before Nov. 1 I'll be happy. (New deductible will start then. Damn that all to hell.) There is another, new test, that is done on the cancer cells that gives a pretty good idea whether chemotherapy will help or not. It also costs $4000.00. It is called Oncotype DX. It appears most insurance companies at least consider paying for it as it could save them money if NO chemo is indicated. I'll discuss that with Dr. Kowalski on Thursday.

I really don't know what I want the results of these tests to be. At least it is answers to something! I guess double mastectomies is acceptable, and if I didn't have to do chemo that would really be great. But, if no chemo, then what does that mean? Good, bad, what?

Once again, I ask: Where is Star Trek medicine when I need it?

Anyway, I'll keep you posted. I rarely have periods of total meltdown lately. I have a lot of anger that this is going to cost us thousands and thousands of dollars. Why should I be punished financially for doing everything "right"? The only thing I did wrong was get sick. Where do the words "fair" and "equal" enter into this? NOWHERE!

Love to you all;

Penny


22 April:

Dear All;

Things are starting to move, but I still have to see the plastic surgeon and the oncologist before surgery. The BRCA gene people have been in contact with my surgeon, Dr. Kowalski, and are going to do only the portion of the test that my cousin has first (only $400!!, NOT $4000) but if it is negative, then they will do the entire $4000 gene test. Irv and I want to know the results. If we are "lucky" (relatively - as if a positive bad gene can be lucky) we will only spend $400. That will determine the single or double mastectomy.

The plastic surgeon needs to evaluate my upper left torso to determine the extent of the previous radiation damage to the ribs, skin and muscles before he can say whether reconstruction of the left breast is possible. Dr. Kowalski seems to think I came thru it all very well and that reconstruction will be possible.

The oncologist needs to decide whether any additional scans, tests, etc. need to be completed before surgery. Since I have no lymph nodes on the left side connecting to the breast, it makes staging of this cancer more difficult. Overall, it probably means that I WILL have chemo.

Then, on their recommendations, the surgery can proceed. Things like expanders under the skin for the "perky" fake boobs (Irv specified the "perky" - what an ass) or whether to put in a port for administration of the chemo. I would rather just go under the knife once, not 2-4 times for all those necessary things.

Meanwhile, Irv has been having uncontrollable itching for about 2 months. Being the doctor phobe that he is he wouldn't go to the doctor until the discomfort wore him down. Liver function and glucose tests came back all very abnormal. He was sent for an immediate CT scan of his liver and pancreas. (My first thought what that he had pancreatic cancer!!!) Additional blood work for hepatitis and pancreatitis plus a hemoglobin A1-C (long term average glucose level measurement.) The CT and other tests were normal except the A1-C. It was elevated, indicating that he is now diabetic! So, he has been referred to another doctor to evaluate that and see why his liver tests are so abnormal. That appt is tomorrow at 11:00 am. We are hoping that diet and weight loss will be all that is required. (We both need to lose weight - this will certainly be motivating.)

At this point our lives are now consumed with medical testing and appt's. Is that absolutely shitty or what? Why all this had to happen now is really making me angry. At least our big bills will all come at once. Maybe we won't pay any tax at all with these huge medical deductions. Probably will be audited as no one will believe anyone would pay $20,000+ in one year! Yikes.

When I have news, so will you all.

Penny


29 April:

Dear All;

I am BRCA2 NEGATIVE! This is the gene my cousin has. But, they will still check for other BRCA abnormalities.

Meanwhile, Irv developed severe itching over a period of about 6-8 weeks. Finally it got so bad that he went to a doctor. It was discovered that he had elevated liver tests and appeared to be diabetic. After a CT and MRI, numerous additional lab tests checking for pancreatic cancer as well as other diseases, we still do not have a definitive answer. He does have an area of concern on his pancreas, mildly elevated tumor markers, increasing liver tests, and compromised bile ducts within and without the liver. (He had his gallbladder removed about 25 years ago.) He is scheduled for outpatient surgery next Wed. May 5 to investigate more intensively. The two doctors caring for him are being optimistic and accentuating the positive - probably he just has some sort of obstruction blocking the bile ducts that isn't visible on the scans, probably due to the fact that he is such a huge human being. The ERCP to be done on Wed. may allow obstructions to be cleared with the instruments used for the procedure. They do put in stents, like heart stents, to open bile ducts. Meanwhile, he is still itching. He describes it as 1000 bees stinging him from the top of his head to the toes, even his tongue hurts! Since any medication to alleviate the itching is very hard on his already compromised liver they will not prescribe anything. He did get a sleeping aid. He is not sleeping or eating, has absolutely no stamina, is very cold intolerant and has lost about 30 lbs, 10 of them since Friday!!! He isn't glowing in the dark yet, but he is slightly yellow from the jaundice due to the high bilirubin.

My surgeon called after receiving the BRCA result and wanted to schedule my mastectomy for May 5. Well, we are much more worried about Irv and he is already scheduled for May 5! Next available date is May 19, possibly May 26.

I saw the plastic surgeon today and he listed a lot of reasons, all of which seemed compelling, to delay reconstruction until after I have sufficiently healed from the mastectomy. He will then have info from my surgeon about the condition of the prior radiated area, as well as healing data, in order to decide whether to proceed with reconstruction or not. (I was proud of Irv for not once mentioning that he wanted my new boobs to be "perky.")

I see the oncologist tomorrow. Main decisions to be made are: double mastectomy vs. single and chemo or not. Frankly, I NEVER want to go thru this nightmare again so I am thinking double with chemo. We will see. We do have a few weeks to make my decisions without any major impact on my future.

Irv and I are coping. We have good minutes and some not so good. This eternal waiting for more testing is depressing and absolutely horrible. I'm not sure if we lived in a more urban area if we would be getting it all done any faster. We like every doctor we have seen. Not one bastard in the group. All are personable and open and forthcoming when pressed for more details - no one ever lays it all on the table until they realize we are not idiots and are knowledgeable and we want to know everything! A lot of people probably do not want to know much at all.

That is the highlights. Once again, when I know anything, I'll pass it on to you all.

Thanks so very much for all your support. Irv and I are very grateful for each and every one of you.

Penny


30 April:

Irv's surgery has been moved up to Monday, May 3. He is scheduled for the procedure to start at 2:30 pm, takes about 2 hours. So I won't have much information until the late afternoon, at the earliest.

The sleeping pills had no effect on Irv's ability to sleep. Swear words - every one you can think of - insert here_________________.

I saw Dr. Kornfeld, my oncologist, today. He is predicting that my Comprehensive BRCA will be completely negative. That means a single mastectomy.

He wants to do the Oncotype DX test on the cancerous cells to determine if chemotherapy will be necessary. The test gives a Yes, No, or Maybe result. Anything in the Maybe or Yes areas will mean chemo. Otherwise, this test has proven that if the answer is No, chemo won't help, so why have it?

Dr. Kornfeld also said that there isn't any way to determine if this is a new cancer or a recurrence of the old. It really doesn't matter in the treatments I can have. No lumpectomy, just mastectomy. No more radiation as it is cumulative and I've already had more than I should have had in a lifetime. Staging is impossible due to the lack of lymph nodes. (Previous surgeon was a jerk and did a full axillary dissection, according to Dr. Kornfeld.) I will get hormone therapy, but not Tamoxifan, because I've already had 5 years of that. It would be one of the new aromatase inhibitors. I tried Femara previously and I always felt unwell, so quit after 3 months, but he said there are two others to try.

We are using up our cell phone minutes at a furious pace, as you can imagine. Since I would vastly prefer to NOT go over our maximum because it is so expensive, I will mostly communicate with you all via email. I apologize right now for that. (We do not have a land line phone. Only 700 minutes on our cell plan.)

I'll let you know what, if anything, we find out on Monday.

Penny