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
