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