Check-up with Dr. G.

I had this appointment for ages.

I walked in that office filled with memories of last fall. Kind of nice to not have any worry or stress. Since he can only do an external exam, nothing could be felt last time, I wasn't surprised that everything was clear this time too.

I was a little concerned about the radiation effects on my breast. Seemed kind of hard on the inside. The skin is healing nicely but inside, it's still pretty stiff. He assured me that it was normal. I told him directly, if you say it's normal, I'll just be patient. It doesn't bother me or hurt at all. Just making sure nothing is wrong!

I find it amusing that it doesn't go down when I lie on my back... like a fake boob! I didn't have a mastectomy but my real boob is now acting like a fake one. Luckily though, they look a little different but in clothes, no one can tell. The only way to do so is to squeeze my boobs and/or see them naked and that's a very limited population who gets to do either!

The scars look good. I told him how I stretch it out every night. Luckily, the only movement where I can feel it is, quite frankly, no movement I need to do in daily life. I lie on my back with my head behind my head (Ferris Bueller style).
http://en.wikipedia.org/wiki/Ferris_Bueller's_Day_Off

I just want the skin and all internal stuff loosened up.

I also brought a copy of my preliminary BRCA results. He hadn't received a copy but he did get a message from the genetic counselor that it was going to be done. I showed him the three mutations that show up in the majority of Ashkenazi Jews and told him frankly, if I were positive, it was most likely to be one of these three. Since I was negative, I'm fairly certain that the full panel will also come back negative.

I told him outright, all Ashkenazi women with breast cancer should be screened, at least for these three mutations, before deciding on surgery. First his reaction is "Some women don't want to know."

That has nothing to do with this discussion, I wanted to say, but I didn't. I just kind of blurted out that it happens but that's not what we're discussing. For the women who want to know, should be able to. If positive, they should be able to shift to a bilateral mastectomy.

"Now, I've been thorough radiation and this could complicate reconstruction." He looked surprised. I didn't even want to say it but I was thinking yes Dr. G, if this is positive, I would consider having a prophylactic bilateral mastectomy. But I wasn't into talking about me, especially because how slow this whole process if going, any radiation damage would be long healed before the results came back and surgery scheduled... Even if positive, I wouldn't run out and do it the next day.

"But first, we have to cure the cancer. That is priority!" Yes, I told him. I agree BUT the question is that this information could change how the cancer is treated.

Unfortunately, he explained, he can't order the test directly. Everyone has to do what I already did, get approved, wait for the interview, etc. Can't do it differently unless the whole system changes. I said my peace and dropped the subject.

Then I got to the nitty-gritty.

"You're not doing any sort of monitoring for metastasis?"
"Non"
"Because... for the slim chance that it's spread, it's not worth the added radiation?"
"Yes, exactly. It serves no purpose."
"So I just report anything unusual?"
"Right."
"Okay, breast cancer usually goes to the bones, liver and lungs first, right?"
"Right."
"So logically, I report on anything unusual with those three?"
I got a less enthusiastic confirmation that time. Your chances are really low, he assured me.
Yes, I know that. I'm very happy about that.

I'm really not worried. It's just the kicked out of the nest feeling that nags at me. I want attention again. I want someone in a white coat to tell me everything's okay. I'll have to wait till May when I see Dr. N. again.

He didn't say when he wanted to see me again. Wondering if I have to. Hoping to have a break actually. I set up all my appointments for February. I just thought it better to clump them together. Was that the last time, really?

I couldn't believe when I went to the pharmacy. He wrote my prescription for Tamoxifen for two pills at 10mg each. Eek! The very reason I had to drag back there last time. This time it was a new girl. She picked up the prescription and wrote over it "20mg 1x a day" over the "10mg 2x a day". Fixed that one!

Next Wednesday, the 17th of December, the same day we were supposed to go last year, we'll be headed for California. No depressing Christmas here in Alsace! Definitely a happier holiday season! 

Wish I could talk to myself a year ago...

I wish I could reach over and tell myself a year ago that everything would be okay.

It was confirmed that it was cancer a year ago yesterday. The next day, I was called in to get a chest X-ray and an ultrasound of my abdomen. Of course they were looking for mets... Such a scary thought. I was crying so much in the waiting room that they put me in the back, feeling sorry for me. October 23rd was a very scary day for me!

The problem is that early staged cancers, well, we don't know what's ahead. We can't know at diagnosis. I had to wait for the pathology. People say "You didn't need a mastectomy because your tumors were so small" but I correct them. They're only half right. Some really small tumors can contain some very aggressive cancers. The HER2 alone will justify chemo. I was HER2 negative but I'd find that out later.

But I just didn't know. I just felt snowed under and like it was out of control, out of my hands. Dealing with something scary in a foreign language, far from friends and family who could help. 

Colonoscopy-the thought is worse than the reality

So glad that's behind me-pun intended!

For the anesthesiologist consult, I got this super-cute Cameroonian-Italian guy who was eager to speak English. He was kind of funny. He started in on the fact that this was much less of a deal than what I went through last year. Heard it! Let's move on!!

On a private FB group for ex-Pan Am Flight Attendants, there was a conversation about colonoscopies. It was really helpful and encouraging. Got the real skinny on this procedure.

That was Monday so Thursday afternoon, per my instructions, I started drinking The Stuff. In the U.S., I understand the routine is a little different. I was able to have pasta a noon and then I was supposed to start drinking it at 3pm. Well, Davina gets out at 3:45pm in town so that wasn't going to happen. I couldn't take her to her choir practice, this one time for a good reason. I came home and was an hour late.

The clinic called and lucky me, first one. Had to be there for 6:45am. I was kind of hoping my husband could just make one trip to take us all in but this way, he'd have to double back. The kids' schools are closeby but they can't get up that early...

I read on the net a tip to add Chrystal Light to the concoction. Great idea! Tasted much better that way. Such a good idea that I made up all three batches with the lemonade Chrystal Light added in.

It certainly went to work quickly. Basically, it was like having the runs but it wasn't painful, the way it is when you've eaten something nasty. But what was coming out was... yellow.

Oh no. I had visions of having to redo it. My gastroenterologist is a sweetie but he won't be nice if he hears what I did.

I called California and talked to my twice colonoscopied mother, confessing my sins. She thought my yellow sins wouldn't be that serious. I read on the internet, no red, brown, purple, whatever but not yellow. But this was seriously yellow. Ugh.

I really ran late on drinking the stuff. I used a straw and made sure it was cold, both of which also helped get it down but the last 300ml, I just couldn't. Bad girl. Bad enough it was yellow but it was 10pm. I needed to get the little bit of sleep that I was going to get.

I did manage to sleep quite soundly, considering that I was nervous and had to get up early, usually a killer-combination for me.

Then in the morning, I had to do the Dreaded Enema. Do I curse the day that we picked a house that did not have an en suite bathroom for the parents!! That's actually not that common in France but I digress. I put the trash can by the door to slow down any early morning child needing to pee. I really didn't want them to see this. The pharmacist told me to try to wait it out 15 minutes and warned me, it wouldn't be easy. I took my iPhone so that I could play with that to distract me while the enema was doing its work on whatever was left in my colon. Again, not as bad as I dreaded.

I was hoping that it would somehow get rid of the yellow. No deal. I just had to deal.

I showed up at the clinic and was shown to the outpatient ward. It was quite busy for so early. Lots of questions. I sounded like I was a good girl, not mentioning The Yellow. I got into the hospital gown with the booties and the cap. Then they gave me a real bathrobe! Felt like I was at a spa but not looking forward to the treatment.

They called me but the other woman had an earlier apt. so I let her go first. Nice me. My stuff was locked away so all I had was a 2009 Hello magazine to read. I kept running to the toilet, hoping I'd see less yellow. I went so often that I didn't see anything, because nothing was left and I was just nervous.

They came to get me and put in, not an IV but just the plug. Didn't hurt. Not convenient that my right arm was away from her. Can't have anything done to my left arm because of the cancer. Had to use the toilet again. Yeah right. They weren't amused. Sigh.

Got back on the gurney. Got covered with the same kind of heavy blanket I had for surgery. They wheeled the first woman in. Yikes. Nurse jokes, just don't look. She's right. Your turn!

It was right next door. I only saw Dr. F and the anesthesiologist, who was also good looking, but big, blond and typically Alsatian looking. I pleaded to Dr. F that I had a confession. I told him about the Chrystal Light and the yellow. He wasn't concerned at all. Just roll over to your left, which was away from him. The animated anesthesiologist attached a big syringe with white stuff in it.

"You're going to take a little trip now. Where do you want to go?"
"Nowhere!" I pleaded. "I want to stay right here!" He laughed. I felt drunk for about two nanoseconds and... next thing I knew, I was back in the other room.

ALL DONE!!!

Yeah. Not too much gas. No pain. Wow, that was easy! Soon, there was a third woman on my other side.

My nice Dr. F went to see the first woman and talked to her. Then he came up to me. Everything was normal. Yeah. The yellow stuff was not a problem. He could see everything. Was it all clear? No problem. So... 10 years?? He made a little face. Trying to say it delicately, he explained that with both my cancer and family history, he doesn't want me to wait that long. 4-5 years would be wiser. I was expecting that and told him.

Then we went in and had breakfast. I recognized it from my other four stays at that clinic. They brought me my Tamoxifen and told me that my husband would be coming at 10am. They called him. I was happy to put my clothes back on and head home.

This is a really funny Dave Barry piece on colonoscopies. He kept putting it off until his younger brother actually had colon cancer.

http://www.miamiherald.com/living/liv-columns-blogs/dave-barry/article1928847.html

Anniversary of the start of my adventure

A year ago today, I had the mammogram and ultrasound that would start this whole adventure. I don't consider it the day I heard the news. By then, it was almost a done deal. The moment was when he stopped and was looking at, what I hoped, would be a cyst. It wasn't and he didn't hide the fact he didn't like it.

I remember sitting in the waiting room and noticing how nervous all the other women looked. One paid and was happy to leave. I was thinking, oh, they're not used to doing this. I was so used to it. Thirty years of screenings is a long time...

I realized that it was Rosh Hashana and we said good-bye to 5774. It's now 5775. I got the BRCA prelim results right before. I'm kind of going to resign it all to that year, since it was found soon after Rosh Hashana last year. Then it dawned on me. 1974 is when my father died, I got chicken pox and we were robbed. I think I know what my unlucky number is now!

I'm not completely done nor will I be. I have a colonoscopy a week from today. I'm not looking forward to it but I'm looking forward to getting it over with. I'm not scared as I was with breast cancer. I see the anesthesiologist on Monday. Maybe I'll luck out and get the cute one who did my surgery! Or, maybe one of the cranky ladies I've already seen. Sigh.

I ran into a mom, and while I tried to stay off the subject, happened to mention in passing my results. All so casually, she says "Oh we have that in my family..." Turns out, she has little contact with her father (parents divorced when she was young) who are back in Paris where she's originally from. She gets this rather cold letter listing the relatives with breast cancer and she was given the actual mutation.

She said immediately that she won't be tested. I had to do some quick thinking. Didn't want to scare her. She said "It won't change anything anyway!" Um, yes it does. I put myself up as an example. "I'll definitely get my ovaries out if they find anything," I thought that sounded practical, then joking I didn't need them anymore, at my age, with three kids.

No, it's breast cancer. Actually, it's both breast and ovarian. She went white. Time to change strategy... I have this really nice geneticist. I'm going to give you his name. And email. Now. Promise he won't pressure you to test. You need someone with a degree who does this for a living to explain things to you...

Of course, I had to run to the computer and whip up a big apology to Dr. T. promising him that I wasn't running around handing out his email but this was a special situation. Please don't pressure her to test but she needs information. He wrote a nice note right away assuring me that I had "done the right thing", that he'd be happy to meet with her and that no, he would in no way, pressure her to get the test.  But he wasn't allowed to contact her. She has to be the one who gets in touch.

No problem. She did email him and has an apt. to go down there.

I'm kind of pleased that it will work out for her. I'm really hoping though that she does get tested. She has a 10 year old girl but I'm staying out of it. I'll let Dr. T handle this one!   

Fond of the Absence...

I took Ronnie with me. He seemed interested in the whole deal and didn't have class Monday afternoon.

When we walked into Paul Strauss, I showed him where all the smokers used to hang out. Now, the only things hung there are "No Smoking" signs with dire warnings of fines for smoking there. He thought that was hysterical, having to wade through a fog of smoke to enter a cancer center.

The oncologist and psychologist weren't there. Good sign.

He didn't hesitate. He pulled out a paper, dated July 21st and put it down in front of me.

BRCA2  6174delT "Absence"
BRCA1 185delAG "Absence"
BRCA1 5382insC  "Absence"

And here we have, absence, absence, absence, he said, poking each box. I smiled. I was especially afraid of that 185delAG because it's so common. They even have their own FB page...

He then explained what else was on the form. They listed the method used. It was done on July 7th! That was less than a month after I was tested!! Still took two weeks to put this little piece of paper together.

He showed me the address. Correct? Yes! We don't know how the letter went missing.

Then, he confirmed that they will continue with the "full panel", searching for the identified mutations on the BRCA genes. But with those, my chances of being positive aren't really much better than any other breast cancer survivor. These three were the ones that occur more often in Ashkenazi Jewish people.

I'm also less worried because many of those mutations have been found in families with outright tragic stories. For example, one woman who wrote a book on the subject, her mother was one of 11 children, 5 of whom died of breast cancer and the mother had both breast and ovarian...

I'm going to get the final results in February so I can wait.

Meanwhile, Ronnie showed an interest in the little family tree that he wrote up. I told him that there might have been another cancer case. "One of the sisters..." no children marked for her. Yes, she had identical twins, both with Type 1 diabetes... and he noted it down.

Ronnie wanted to ask about balding. He wanted to know what his chances are, since his dad's side is all bald and on my side, it's impossible to know if it's on the X chromosome. We have three generations of women without brothers. He laughed and said he was in a similar position. "I'm 37 and haven't started losing any hair yet and all the men in my family are bald!" I thought he was even younger. Kind of relieved that he was that old!

Apparently, it's not so simple as riding on the X chromosome and isn't necessarily sex-linked, but some kinds are... it's complicated!

I thanked him for being so prompt with responding to my emails. He says he tries to keep it up.

Had to dash out of there and get Ronnie to his next class. Ran out of there feeling really thankful for pretty much everything...

Good way to start the Jewish New Year. Kind of brings the year's events to a close. 

Read the last post first

My genetic counselor did get back to me. He said no, they'll only test for the BRCA mutations. So then I asked the sticky question, any idea on when I'd hear about the three mutations I wanted them to run first?

He's very quick to reply. Turns out, he answered my question from somewhere else. He went back to Paul Strauss, the cancer center and looked up my file.

They contacted me on July 28th, while I was in the U.S. I never got the letter and he knew looking at it. I would have mentioned it if I had. I was obviously oblivious to this fact!

Another email informing me of this. Oh panic! Here I was, thinking I was going to get my results in February and they have them!! Oh no. Can you come on a Monday afternoon? I can come this Monday if possible.

He used a term in French that means "targeted research". I assume he's talking about those three mutations. I hope I was understanding him correctly. The one glitch he mentioned in passing, at the interview in June, is that they have to give the results in person. No phone calling. If they did those three mutations first, I'd have to come back twice; once for the preliminary results and then again, when they finish the full panel.

Not a problem. I live 10 minutes away. I'll come twice.

To be honest, for me, this is the "real" result. If I am positive, it'll be one of these mutations. I really doubt it could be some rough mutation that somehow floated around my family. I really don't have the heavy family history that BRCA families do. There are the occasional stories of some woman doing the test as protocol and it pops up positive, with little or no story.

I had to drop Talia off at school and called Paul Strauss in a hurry. No! Everyone was gone. The secretary wasn't there. I couldn't make an apt.

Then, another message in my inbox. Would 2:30pm work for me? Heck yes!!!! I'm there!!

I'm going to back up this story a bit to add a little detail. This all got started when I watched a video of a presentation that a BRCA positive woman gave at Stanford.

https://www.youtube.com/watch?list=PLWIrCndjhuYs3Ffe2o-03llN8uuzIOTtv&v=ZbDizz8X6BQ

At about the 3 minute mark, she mentions these other mutations found. I googled them and quite frankly, don't really understand. They're not on the BRCA gene and I wasn't clear on how they function.

Then the woman in the video comes on one of the BRCA private pages on FB and I was able to recount this. Her video got the ball rolling! How many months would I have waited before getting up the gumption to find out what the deal was on the preliminary results??

Pity my poor genetic counselor

I wrote him again. Two topics. One, are they going to test for CHEK2, PTEN and PALB2 in addition to BRCA 1 & 2? Like I really understand any of this!!! Just thought I'd ask. It's included in some of the BRCA information.

Basically, they're learning more and more with time, and being able to test for more and more.

Also, I asked if they did run my test for the three Ashkenazi mutations. They had agreed to and if these are negative, I'm going to assume that they won't find anything else (could be wrong, unlikely though).

I excused any errors in French, since I won't have my children correct it (they don't need to know all these gory details) and thanked him... again...

Back to Adassa with my little one

I thought my youngest had scoliosis. In 2011, the pediatrician and pediatric radiologist said she did. Not too much. If it's stable, nothing needs to be done.

Of course I had to get a follow-up and I dragged my feet. Finally, when I went to make an apt., her pediatric radiologist had retired! The ped wanted to send me somewhere else. The secretary was going to give me a name.

"Listen, she's 10." I explained, "does she really need a pediatric radiologist? Her school is right near Adassa. I can park. She's already been to Dr. N. He found my cancer. Can I just go there?"

I think the found cancer words sealed the deal. Of course. She can go there...

When I called, they wanted to give me Dr. N.'s partner, who does children, including mine and I know him too, but he wasn't there in the afternoons. Dr. N. was. This X-ray didn't merit pulling her out of school and there was a slot Friday evening.

I managed to find her old X-rays from the retired doctor and brought them along.

Luckily, the blond tech he's had for all these years was there. She was the one who cheered me up the day of my biopsy. She's really good with children and was able to get Davina to do what she needed to do. She got her into position. Really huge negatives! Like three feet long that she pulled out and took into the other room.

Then she put us in the back waiting room, where I spent so much time on the day of my surgery.

Meanwhile, my two older ones, who were supposed to meet up and come home together near their schools, got into a tiff. Talia ended up hitting her brother, who had forgotten his phone at home, with her school bag. Of course she did it with all his friends watching... They had absolutely refused to come over to Adassa and wait so I let them organize coming home themselves. They both insisted on coming home together on the tram. So I was trying to negotiate a settlement (that was not going to involve coming to Adassa, even though it was in walking distance, for either one) when he called Davina's name.

Gotta go! Shut off phone and stuffed it in my bag.

Said "Bonjour!" shook his hand and peeked at the X-ray. "We're back. You've inherited her from Dr. T." (the retired radiologist). He thought that was funny.

"Well, I'm going to retire too." Huh??

Awkward silence. What was that? Fishing for a compliment? Did a rich aunt die and leave him everything so he's now announcing to me that he's retiring?

What to say? "Um, I think you're a tad younger than Dr. T." He smiled.

Then he announced "She doesn't have scoliosis."

Huh? What?? He showed me the old and new X-rays. Her back was curved, less and the other way! I'm like "what?!?"

She has... and he said some medical mumbo jumbo. Scoliosic something or other. What is that?

He just repeated it.

"That's what you just said!" Sigh. He loves explaining stuff usually. Was he just not in the mood? Well, I thought brightly, I can ask the ped eventually.

So basically, I've been walking around for the last three or four years thinking my daughter has scoliosis and now, all of a sudden, it's off the table. I did mention that we were told that as long as it didn't progress, nothing needed to be done. I hadn't been losing sleep over harness nightmares or anything. Apparently, slight scoliosis's that don't progress and don't need treatment, are pretty common. I wasn't worried but now I get to nix it altogether.

"Ballet is good for this!" he offered up. My daughter purses her lips, whispering "Nooooooo!"and shaking her head slowly. So what does he do? Repeats that. No sorry. Not happening. His sales pitch wasn't working too well.

Someone knocks. Secretary explaining that someone needs an X-ray first thing in the morning. He then explained that he wouldn't be there and told her what to do...

When she left, I just said out of curiosity "You don't work on Saturdays, do you?"

Then I got this whole explanation of how their scheduling works. Wouldn't explain whatever condition my kid has five minutes earlier but something I absolutely don't need to know, I get the whole, detailed description.

I know this guy has Asperger's. I absolutely am sure of this. Any doubt has been erased in my mind.

Please note, this is not a disparaging comment. This would throw him in with Bill Gates and Albert Einstein. Actually, a diagnostic radiologist is the perfect career choice for someone with Asperger's. They like repetitive patterns and get upset if something is amiss, like a cancerous tumor. The way he reacted when he saw mine comes to mind, running down the hall, telling me to get dressed quickly...

It actually explains a lot about him (if true). I figure since I'm nero-atypical (dyslexic) myself, it takes one to recognize another one. I was glancing around at his office. Not one single item out of place. Everything stacked in little piles. The picture of his daughters that he's only changed once in 14 years... Soooo wanted to ask him "Do you feel that you're wired, just a little differently, than everyone else?"

So, figuring I can safely jump subjects without penalty (social interaction is not an Aspie's strong point), I happily told him that my ovarian cysts were gone at my last gyn visit and that I had a date for my colonoscopy with the gastroenterologist he recommended, there at Adassa, in October.

I mentioned a study that came out recently in California, saying that a lumpectomy with radiation was just as effective as a double mastectomy for long-term survival. Then I added that my sister wrote an article on it. "Your sister's story! Yes, I read it..." Very nice but that was ages ago.

I said nicely, "Actually, she's a medical journalist. She writes a lot of stories. This one is more recent..."

As he was putting the X-rays away in the envelope, I noticed one of the names of another radiologist in his group. She had both the name of the retired radiologist... and my surgeon. "Just wondering..." I started, jumping subjects once again "is this coincidence??"

"No. She's married to Dr. G.'s son."

"So his son is married to a radiologist and his daughter is married to a radiation oncologist?"

"Huh?"

I named the son-in-law. "He works at St. Anne."

What's odd, and I didn't mention it then, but I realize that I don't know either of Dr. G's children but I do know both of their fathers-in-law, just by chance. I'll mention it to Dr. G. when I see him in December and we'll have a chuckle over that fact.

This town is too small for my cancer!!!

"Yes, it's a medical family."

"Like mine. Like yours'!" I added brightly.

He stopped and looked at me sadly. "Neither of my daughters went into medicine."

I think that's the third time he's told me that. He originally said that about three ultrasounds ago. I remember him hovered over the machine, glaring at the screen, grunting "Ecole" click! "de" click! "Commerce..." click! Business school. We have issues! Do you want to talk about this??

Well, neither my sister nor I went into medicine, and none of our cousins, I told him again.

He really needs to get over this, I thought, leaving his immaculate office.

I did mention my theory to one person who knows him, who totally disagreed (guess he never compared her thyroid to his hair but I digress!) Then she said "But I thought you liked him!"

I do. The Asperger theory just would explain a lot. It actually adds to his charm, and gives me free reign to skip from one subject to the next, with impunity...

Now... the gastroenterologist! Oct. 17th is our date!!!

Yes, I did it. I made an apt. for my colonoscopy!

Here in France, they don't systematically do it at 50 years like back in the U.S. They screen first. I got the letter in the mail. Threw is out. I have "family history" so that wasn't happening...

Basically, it's not difficult to get an colonoscopy if there is any question. These letters are sent out and basically, blood in the stool is checked. I wasn't going to bother dealing with my own poop. My grandmother had colon cancer so it's a done deal.

Turns out, it was in the same building as the pediatric cardiologist where my kids' hearts were checked. The building is basically full of medical offices and he was on a lower floor.

When I arrived, the secretary asked for the reference. Um, no. I don't have one. I just made an apt. No problem!

Dr. F. was a short, bald guy. He seemed serious but he got more animated as the visit went on. His name is similar to that of a popular band so I resisted humming any of their tunes. No, the name doesn't fit.

I told him that it was Dr. N. who recommended him. Yes, I know that it's a bit weird that a radiologist is recommending a gastroenterologist but I just happened to be talking to him about this and so I asked.

I told him my grandmother's story. I only heard the full version this time back in California. She was hit by a car in 1968, luckily, not too badly. She did end up in the hospital and apparently, the shock hit the blood vessels in the tumors in her colon, which she wasn't aware that she had.

They operated and removed them. The doctor wasn't overly confident. "I tried my best" he told my mom.

"So my grandmother moved to California and died there 30 years later of something else at age 92" I told him. Never had any more problems.

But the "rule" is usually if the relative has had colon cancer before age 60. Although my grandmother was 61, it was obvious she had had it for a long time.

What I didn't tell him is that my mother never told my grandmother that she had actual cancer. She told her that she had "some polyps" removed. "My mother couldn't have handled the news!" The doctors, who already knew her, played along. She went to her grave never knowing!

I didn't go into that much detail with him though. He then told me that as a breast cancer survivor, I was going to be contacted. "There is a slight correlation between breast and colon cancers. A small one, so we recommend doing a colonoscopy. You beat us to it!" But then he explained that I had a double-case for a colonoscopy so there was no question about it being covered by the French system.

I did drag out that BRCA test story. I told him that I'm waiting on the results and wanted the colonoscopy out of the way because my friend in N.Y., who's an gastro too, recommended getting it done before any abdominal surgery. I told him outright that the ovaries are coming out if the test is positive. I didn't mention that I want my uterus out too but that's beside the point.

He agreed. I also know that the prep will be the same for both, so I better get used to it!

"I hear that some are easier and taste better than others".

"Some taste better but others work better. I'm giving you something that works. That colon has to be empty before I do anything!" Um, okay. Fair enough...

Exam time. Ugh. Tried not to giggle. I'm very ticklish. Then he has to poke me. Ugh. "Try to relax". Yeah right...

I did ask about my period and whether that's a factor. Thankfully no. I can't schedule because this darned Tamoxifen is wrecking havoc with my system so it's Russian Roulette. He assured me that no rescheduling would be necessary.

Bunches of papers to sign, my Rx, and some instructions, which are actually quite different than what my friends in the U.S. got. I scheduled it well away from any Jewish holidays and a trip my husband is taking... Why we went with Oct. 17th.

He assured me that it was nothing compared to what I had already been through with the breast cancer. I'm not even going to be in the OR but some dedicated room upstairs at Adassa. It's a Friday so I have the weekend to recover.

The secretary told me she nearly walked in on us. She heard us laughing and said "Sounded you were having a good time. I wanted to join you!" 

Interesting visit to the homeopathic doctor...

So on to my next apt.!

I was kind of stressing because it clashed with a pediatric apt. for my kids, so I had to drag them along. Luckily, he's near the shopping center so I sent two of them off with a 20 Euro bill, to get something for breakfast. My middle child was happy sitting in the waiting room, with the iPad, watching gymnastics videos.

He was running really late. He was on his own, without the assistant. So he quickly went through the exam.

I told him, that in principal, I think it's working. The only issue is that the pellets are made with lactose. Normally, that's not really a big deal but it was upsetting my stomach, probably because it has to be taken on an empty stomach.

"It comes in drops, if you don't mind the alcohol." Great. Let's do it.

Then he says something odd. I was thinking to myself, my French must have gotten really rusty after a month in the U.S. I thought he said it was made with snake serum!

Um, what is this? Did you say "snake serum"?

Yes! But in a "homeopathic dose". Yikes!

I'm taking snake serum for menopause symptoms?!?

It's called Lachesis Mutus. The other treatment is Thuya occidentalis, which isn't snake, thank goodness.

Turns out it's a very dangerous snake.

Open mind... Open mind...

But when they gave it to me in drops, it's a whole bottle. It looks more like snake serum than the pellets did.

The Thuya stuff did not come in liquid form but the pharmacist suggested a bigger-pellet version. I was zen with that. It's still lactose but not as much, in principal. 

Vacation over. Back to the appointments!!

Nice to go home, after my adventure. My nurse mother thinks the scar is too big. Running up and under my boob, I'm not too bothered. Can't even see it when I walk out of the shower. In my book, getting clear margins is definitely the goal. If he had to slice a bit further, I'm good with the deal!

I saw some of my BC survivor friends. Felt like I was part of a club! I now speak the same language. Some of the politics around research and treatments was interesting. I didn't see the relative who had BC but her husband come over with their son. His mother then got it too! So three women, in the same family, none of us blood relatives!!

Hated getting on the plane to come back!

First, the gynecologist's, barely over jet lag...

The infamous wand-but it was good news. Those cysts are gone! She thinks they might have been a period thing. It kind of hurt actually, but I was a Big Girl because I wanted her to get a good look.

Speaking of, brimming with normalcy, I happily reported that I had a period, right before leaving for California, lasting a very sane 3-4 days. Then... nothing till a full month later.  Then another 3-4 day period!!!

I was the Queen of Regularity when it came to my cycle. When I started flying international flights, every other woman but me was messed up. Not me. The only time I was ever late was when I was pregnant. But even my iron-clad cycle rhythm was no match for Tamoxifen!

Sometimes it goes wacky for a few months, she explained, and then evens out again. Guess menopause is still staying away, even with Tamoxifen's welcome mat out!

I discussed the whole BRCA deal. "Now you and I agreed. Positive test, those ovaries are gone, right?" She confirmed it and then I recounted the discouragement I got from the oncologist and Dr. N. This country is really a bad place for a BRCA positive woman, I mentioned.

She was worried that I was too worried over my test. No, I'm not really that convinced that it will be positive. One in 5 are a concern but I'm not losing sleep. I would be upset but at my age, I don't see it as a total disaster. I just need a plan in place. I have your support and that's a comfort.

While I am not so much worried about the results, I am disturbed about the whole attitude in France towards the BRCA mutation, with women being discouraged from doing the test, the length it takes and then discouraged from doing preventive surgeries. It's scary. But if my test is negative, I'm dropping the ball and walking away. Not my headache. It will have to be someone else's battle.

She then said to me "If this test is positive, I'll make sure you get whatever surgeries you want!"

Sigh. Sounded good to me!

She's baaaaack!!!

I go in person for my apt's with Dr. G and Dr. N because they're right near my youngest's school. The Rx for my heel had been burning a hole in my pocket for two weeks. I only really hesitated because I'm sure I now glow in the dark with all these X-rays and I know there's no real solution for my heel. Plus, I was afraid that Dr. N. and his team are just plain sick of me!

I'm talking to the secretary and there's no slot for the morning. "How about the afternoon?" Yes. Oh, and it has to be Dr. N (not his partner) because I need to talk to him about something else. Not possible.

"Oh yeah, that's right. He's at Strauss for the MRI." She looked at me with wide eyes. "Yes, I've memorized your boss's schedule!"

Later, when I told Dr. N. that story, I proudly announced "Monday afternoon, Strauss for the MRI, Thursday morning, the mammograms at Schiltingheim... I think I scared your secretary when she realized I'd memorized your schedule."

He laughed and added "You forgot, Friday morning, I'm at Diaconesses for the CT scans..."

They had to do both feet "because we always do". Ugh. More radiation... They also put me in a position where I was about to fall off. "We could do it lying down..." Then why don't you?? No, I was passive and compliant and it was over quickly.

Then I sat in that infamous back waiting area where I spent hours the day of my surgery. An orthodox Jewish woman sat down next to me. I think she was surprised when he finally called my (very Jewish) name. He used my last (husband's) name this time.

He explained that what I had was exactly what the generalist told me. He just repeated it. I rolled my eyes. He then went on to explain in detail why it hurt more in the morning. No, I told him. I want an invasive, definitely treatment that will cure it. Sorry, he told me. I can live with it. I'm not buying special shoes or inserts, at least not yet...

Then MRI talk. He is absolutely sure that I can do this next fall. "Just make the apt. and I can do the paperwork". Then he has to call the desk and make sure I have the ALD thing on my carte vitale (like he had to do that right away). Sigh. I explained, last time your instructions were none-too-clear. He laughed. Oh yeah. Sorry about that. Good thing I remembered Thursday afternoon...

But... I told him, I do have a couple of other things I want to show you. I pulled out the envelope from Dr. Burned and slipped out the letter. "Look, proof that he is capable of writing a report of one page." and gave it to him. He started to read it. "I absolutely understand none of it," I told him, and gave him the ultrasound too.

Then he launches into a convoluted explanation that while it didn't make sense, earned him points for creativity. Something about my thyroid doesn't look completely normal but is functioning and cosmetically, it doesn't matter as there can be variances. I can't remember...

Bizarrely, he compared it to his hair. Well, you see it's kind of salt & pepper. Okay, it's more white... He pulled back on his chair. I kind of started to snigger so he ended up abandoning it.

"If my antibodies don't change, she says I might not even need 6 month monitoring. We can do it once a year." I said, putting away Dr. Burned's stuff.

I also have these, I said, pulling out two ultrasounds of my ovaries. "This is the one you did the day after my diagnosis" and put it in front of him. "This is the one Dr. K (the gynecologist) did a few weeks ago in her office..."

He looked at both. "Well, first of all, I did it trans-abdominal, and she did this one transvaginally..."

"I'm well aware of that." Then I looked at the date. It wasn't a few weeks ago. It was March, and pointed that out.

"You have two cysts on one ovary and one on the other." Holding up his ultrasound, added "No, nothing on these last November..."

"But I hadn't been on Tamoxifen for a full month yet! I started early March and I already had cysts??" It's a common side effect.

"They need to be monitored." Oh please Dr. N., I thought to myself, please don't offer to do that. Let me go back to my own female gynecologist and have her put that darned wand up my private parts. Please don't offer!!

I quickly added "I guess I'll have to call Dr. K!" pulling his bluff. Then again, it's the only part of me he hasn't seen... Let's keep it that way.

I asked him why my BRCA test was going to take so long. His explanation is that in the U.S., they have central testing labs that only do that, all day, every day. Mine is being sent to a lab that does other kinds of testing. Most of it is done by hand... Not sure if I'm buying it but oh well.

"But in any case," I said, waving my ovary images in the air "These have an expiration date. If this BRCA test is positive, they're gone..."

"But here in France, we usually monitor..." Oh nooooo! I was going to hear that same horrible "French women don't get surgeries" crap that the oncologist told me at the interview. "No, no, and no! I'm 50 and it's simply logical to get them out. They've done their job. I'm not having any more kids. I don't need to go on any Death Watch for a disease that has few or no symptoms, with no reliable screening method. I may get them out, even if I'm BRCA negative, at some point. But if I'm BRCA positive, I will for sure!"

I can be so confident because I have Dr. K's support on this. She agreed completely (and added that she  was going to suggest it).

"Don't say I'm 'afraid' like the psychologist over at Strauss did!" then I thought about it. "Yes, I'm afraid, if you want to use that word. I'm afraid of a deadly cancer that doesn't have a reliable screening method and a high death rate... If you want to say I'm 'afraid', go ahead!"

"It's just here in France... the culture..."

"Oh don't give me that 'cultural' palavah!" I said, waving the ultrasound for emphasis. "Are we really talking about 'French culture' or are we talking about women who are not informed and not aware of their risks and options??"

He just stared at me and smiled. He didn't dare contradict me. Also, it's just plain dumb for us to argue over "French culture"anyway when neither of us grew up here, to be honest. Obviously, I'm not basing any medical decisions on what the next chick, who is from here, does, anyway.

Time to change subject!

"Listen, I have a friend who is a gastroenterologist who suggested to me..."

"Where?" Um, does it matter?

"New York, well, outside... old friend. We were talking. Grandmother had colon cancer at 61. Mother has history of polyps... I'm 50 and I need to get this done. He explained to me that it's harder to do a colonoscopy on someone who has had recent abdominal surgery. Not a huge risk but since I have to wait anyway for the BRCA results, I might as well get this over with in the meantime..."

He nodded "Yes, that's true. Scar tissue. Might make things more complicated..."

"I did a name please. Do you know someone who does these well?" He didn't hesitate and jotted down two names. "They're in practice together, down in Neudorf. Either one is fine. You can have it done here or at..."

"Here?!?" I said delighted. I didn't know that was an option, especially since Neudorf is kind of far. I don't mind going to specialist there though, and have done many times. But the idea of getting it done so close to home was an attractive one.

Thought I'd end things on a happy note and gathered up my ovaries and other papers, popping the two names into the envelope.

"Oh, and by the way, I'm telling everyone, I'm looking for a job. Be my spy with your Council of Europe volleyball buddies. I don't want to teach English, if I can avoid it..." We shook hands and I wished him a good summer. He's safe from me and my drama for a few months, at least...

I went home and booked everything. I called the doctors and make at consultation for early September. I did ask a few obnoxious questions. I was mostly concerned with timing and just wanted to know how far in advance this could be booked. She assured me that three weeks, maybe a month was fine (yeah!) I also booked Dr. Keller and told them it was because of my Tamoxifen-sponcered cysts. I also made an apt. with the homeopathic guy, since at the pharmacy (who know him well!) warned me that my Rx was up. I stocked up for vacation. The kids are seeing the ped early September too. Maybe Dr. G too...

Endocrinologist and Generalist

I went back to the endocrinologist's. She was a little impatient with me this time. Problem is, when I try to ask about anything, I get a speech about how it isn't cancer, how it isn't going to be cancer, how this is "no big deal" and so on.

Can a former cancer patient ask about their thyroid without jumping to conclusions? If I had never had cancer, I might have been given some information. But given my status, I'm reduced to being told that it's not cancer-related and I don't get to know any more than that.

I did manage to find out that this might be the leftover from a previous infection. I mentioned the H1N1 and otherwise, I have no interesting medical adventures to report.

She's not convinced that I'll even need 6 month screenings, something that wouldn't have bothered me anyway. She said if the numbers are stable, we can go to yearly. I made an apt. for the end of January and already have the Rx for Dr. Burned.

I didn't recount the Jealous Radiologist story. I told the GP about it and she rolled her eyes. "Any radiologist can do a thyroid scan!" I'm so not going to push this. I'm just doing what my endocrinologist wants and I can almost as easily go to Dr. Burned.

I also went to see my GP for my heel. It kind of hurts. I wanted to hear about some kind of cure but I got an explanation (she she actually explains things) that it's another age-related quirk. Sometimes a sliver of bone escapes. I can get inserts for my shoe. I said, no, I want some aggressive, invasive procedure that will get rid of it for good. She laughed and said, no luck!

She also isn't too supportive of the MRI. This is a change of heart. This could be a problem with the French Social Security system. But she did give me a Rx for the heel (that has no real cure) with a comment that now I can go back to Dr. N. and talk about my MRI!

I haven't had the courage to do that yet. I drive by there everyday and I'm so sure they're sick of me by now! 

BRCA testing, wasn't that an interesting cultural experience??

Can I do anything normally? It's like this whole cancer journey, along with all the usual scariness and downs... I have to throw a non-native language and other culture into the mix as well. Because we weren't already having enough fun!!

I had this fantasy that in the World of Science and Medicine, that things were pretty much the same. How wrong I was...

First of all, I happened to be assigned Friday the 13th on a full moon to do my BRCA testing. I'm not one to get too excited about these things but it still rated high on the creep-o-meter.

But as I walked up to the building, I noticed something different. I joked about having to wade through a cloud of smoke to get into the Cancer Center. Not a cigarette nor ash to be seen. The smokers were all gone. It looked eerily empty, void of people in the clear air. Then I saw the big No Smoking sign with the fines listed. Okay, things change...

I saw my same reception lady. I asked her about the MRI and confirmed with her that I can't waltz in with a "Dr. N. told me to come." Um no. Get a piece of paper. Ask your GP, or him, doesn't matter. Just having an apt. doesn't cut it.

I brought a reminder notice for my apt. since I didn't really have any doctor's orders. I also confirmed that this is all paid for. Yes. Related to my cancer treatment, it's covered.

She then gave me kind of confusing instructions. Follow the violet spots on the floor and wait in the violet waiting room. No one was in there. I actually missed it and radiation sent me back. I happened on the MRI machines. Apparently, there are several with "IRM" (French for MRI) on the doors. Was it on the ground floor? I couldn't remember. Then I stopped in front of the door where I got the news from Dr. S. about the second tumor. Kind of stopped me in my tracks.

But then I wandered the hallways. No "Genetic Oncology" sign anywhere. No mention of Dr. F. who's in charge of it. Just blank doors...

Then I'm realizing that I need to visit the restroom but with no one else in the room, I was too nervous. I stopped someone in the hall and she confirmed, yes, I was in the right place. Just wait.

Then a youngish looking doctor came in and asked my name. I shook her hand and headed into the room next door.

There were three very young doctors, none of them Dr. F. One was a geneticist, actually a Ph.D. and the other, an oncologist. The blond woman was an "onco-psychologist", a cancer psychologist??

I was curious whether they'd give me a big speech or whether they'd prod me to see where I was with it all. I got the feeling I was being prodded so I put the articles on the table that I brought and we just started talking. Did I have anything about my cancer? Ugh no. Bad girl! No one told me... didn't think it... I can tell you... IDC, 15%, estrogen and progesterone positive, HER2 negative... and so on. Did I have chemo. I pull on my obviously been there awhile hair and said no. It was caught early enough AND the pathology was good.

Did I have my sister's results? No, she was given them over the phone. No piece of paper. What about her cancer. Um, no, I don't have that either. Didn't realize it. Could have is someone had TOLD ME. Tried to not sound scold-y.

The geneticist pulled out the family tree that he had made of my 6 page questionnaire, which was sitting on the table. In the middle, were the Robinsons, no first names but the couple who came from Russia. I pointed this out. Then they moved over to the cousin who died. Her brother also had lymphoma. Do you think they're connected? The oncologist said that they didn't know. It wouldn't be a strong link though.

I did mention that there were three sisters. One lost a daughter to BC and one had a granddaughter (me) with it. All three sisters lived to ripe old ages without either BC or OC (ovarian). There were other female relatives but only the two cases.

The geneticist asked me about what I knew about how this mutation works. I told him that I saw a graphic on a documentary of a woman walking two, not dogs but chromosomes. It explained that everything works fine, except when something prompts the cancer, she doesn't have the other gene to protect her. Only one works and if that fails, she's in trouble.

Not sure if it was the best graphic but it did help.

He had another one, that was actually better. It showed little circles divided in thirds with different colors. The "normal" person starts with clear circles. The person with the mutation already has one third of the circle colored in. Then, other colors were added and that was supposed to represent cancer. With the affected person, basically the mutation, represented as the already-colored in area, let cancer skip a step, filling up the other two areas faster than in the normal person.

I asked about what I had read, that different mutations carry different risks and they confirmed that. Also, the risks for men, which the geneticist said right away, were far less of a risk than the BC/OC risk in women with the BRCA mutation. The possibility of passing it on to his children is the greater concern.

At one point, he even called it "bra-ka" like we do in English, instead of spelling out B R C A like they do in French letting me know he knows this one (later I read on his Linkin account that he studied in Oregon but he didn't mention this). Everyone has to hide their English from me!

Then the tricky subject-timing. How long? Eight months to get the results. In some places, the geneticist said it's 18 months. Yikes! They sort of expected my shock. "I'm hoping that if you get a more pressing case..." Yes! yes, they assured me. It's rushed through but not my case. I'm not any emergency. Fine. I accept that but... and here's where my negotiating came in.

80% of Ashkenazi women who test positive for BRCA have one of three mutants. The most common is the 185delAG, also the 5382insC both BRCA1 and the BRCA 2 mutation 617delT. I showed them an article on this.

Logically, if I'm positive, I will be one of these three. The geneticist said that there are thousands, almost an exclusive mutation for every case they get. But with the Ashkenazi population, it's not the same deal.

"Where is this lab? Where is it sent?"

Nothing is sent anywhere. Fourth floor! "So it's right here??" yes, and it's public, no outside private lab involved. They also mentioned that I would have access to my genetic information for life. No copyrights? The nodded, obviously familiar with the controversy in the U.S. with a private lab that does the BRCA tests.

So I put the idea out. What if it's proposed, that in my case, if positive, I'm more likely to have one of these three. Wouldn't that save them a whole lot of time and energy?

They look at each other and nod. "But we still want to do the whole sequence on you, just in case."

"Great news. But do you think there's any way I could get a preliminary result on these three. Please make it clear that I fully understand that it would be a preliminary result, and not definitive." (Knowing that's what the lab would worry about). That went over just slightly less well.

"The only problem is that we don't just call you. You'll come in for the results, either way. So whether we need you to come in just for this..." Honestly, I'm fine with a phone call, especially if it's negative. They kind of looked at each other. "Let's see what the lab says first!" I said brightly and everyone nodded. Change subject!

Now they wanted to discuss the "what if" of a positive test.

"Well, I discussed this with my gynecologist and we decided, the ovaries, they're gone."

Really? I'm 50 and done with them. Then I said that it was really ovarian cancer that I fear. Few side effects, no really good way of screening for it and, I joked, I already had Breast Cancer. Better the devil I know, as we say in English... But the breasts, I'll probably go with screenings until I decide when and what to do.

They were a little taken back by my bluntness so I tried to soften it. "If I were younger and hadn't had my children yet, perhaps not... but for a 50 year old woman, I think it's a reasonable decision, since it's much less extensive surgery than the breasts." The psychologist seemed surprised. "Well, if you're really worried..." I'm actually not, I explained. I just didn't see the point in keeping them if I'm BRCA positive. They've done their job and I didn't see the point in walking around with them, if they carry a likely risk of cancer.

Breasts, that would be a decision for later. I'd need to think...

"We actually don't do that here in France". At all? An ablation des seins, she called it, a very harsh term for removing the breasts. I've only heard and used the word mastectomie.

"Well, I'm sure it's done sometimes..." Again, if the woman is really worried. They used that annoying French word "angoisse" which does mean worry, but can imply unjustified worry.

"We do surveillance" the oncologist explained. I was trying to get my head around this. They have all these French women, being surveyed and just waiting until they get cancer?!? Am I missing some point?

"It's a different attitude towards the body, it's cultural..." the psychologist started in. I bit my tongue but I was thinking it's about not informing women of their choices people! I remember how the lumpectomy was not presented as an option. I figure French women with BRCA are being told, oh we'll watch you! How nice... until you get cancer. A good quote I read somewhere was the question a doctor put to a BRCA positive woman "Would you like your mastectomy with, or without, chemo and radiation??"

This was not the moment to get into this discussion, especially since we don't even have the test results back (and won't for many months). Also, these people were not the ones who would be making these decisions anyway with me. Useless to get into a go-nowhere discussion...

So what kind of surveillance would happen? Mammogram, MRI and ultrasound. Um, that's what I'm going to be doing already. Really? Oh no... WHY did I open my big trap.

I blurted out a half-garbled response. Well, Dr. N., been with him a long time. Once a year, no MRI's, my sister, MRI's every six months, Fibrocystic, blah, blah... Then I decided that I just had to come clean. "I've been going to Dr. N. a long time. He has family, who are radiologists, in the U.S. so he's familiar with how things are done back home.

I asked, and he pretty much does what I ask..."

I was hoping that making it sound like I was a Special Case would mean that they wouldn't get the impression that he's going around ordering all that for every IDC case...

But this was different. I explained that I'm on a 6 monthly schedule; mammo + ultrasound and then 6 months later, MRI (I left out the story of the second mammogram just to not confuse things).

No, BRCA positive women in France only go once a year and have to have all three within a window of 2 months. She explained that it was to check on the other tests. She was surprised that my sister isn't getting the other two and just MRI's. Yes, I know about the false positives. She's already had a biopsy once...

I'm still digesting that. Basically, except for the timing, I would be followed the same as I maneuvered with Dr. N.?!?

Then I had to sign a form, consenting to everything. I realize that a positive means I have a higher risk of cancer. All info is confidential. My blood can be used for other research principals. Any doctor I designate can have access to my records. No one in my family will be informed. I realize that I may still be a carrier of something that cannot yet be detected, and so on.

Basically, we winded it up with confirming that no testing can be done on my girls until age 18, by French law. Also, they asked again to have the information on my sister and my cancers sent. I mentioned I'm going home this summer and they asked if it could be emailed earlier.

Later on, I read that women who are more pressed to have this test, drive up to Belgium and pay for it. Results in 3 weeks. That's a 6 hour drive and quite frankly, with my risk factor, I'm fine with this. Also, with a bit of research, turns out that only 5% of BRCA positive women get the bilateral mastectomy.

The geneticist accompanied me to get the blood test. He pointed out their names on the forms and the emails where I could send the additional information.

Then a nurse took me to another room to get the blood test done. I hardly felt it! It was like the easiest blood test I've ever had. She took two vials and put them in a plastic bag, made a copy of the consent form for me to keep and sent me on my way, through the smoke-free front door.

Couldn't have gone better at the surgeon's

Nice morning. Parked at Adassa and walked Davina to her school, since it was close by and the traffic is awful in the morning. Didn't even have to pay for parking since it starts at 9am. Davina starts school at 8:10 and my appointment was at 8:15.

Davina scampers off and I head back to Adassa. Dr. G. greets me with a "Yom Tov" since it's Shavuot and I wish him the same. I sit down in the same seat where he told me I wouldn't need chemo. Then he takes off without explanation. I can hear his voice in the hall. I look around. No diplomas displayed. American doctors usually frame and post them. I never see them in French doctor's waiting rooms. Dr. N. has a bunch of photos of S.E. Asia but Dr. G. seemed to have a lot of African art around, some of which I remembered from his Ob-Gyn office across town, 15 years ago, when I was pregnant for the first time and he was still just a Ob-Gyn. New location and roles, both of us...

I was braced for a confrontation so I took the High Ground. When he finally pops back in, I stand up, hand him Dr. N.'s envelope and say brightly "Good news!"

I didn't need to tell him what it was. He quickly slid everything out and started popping the mammogram images on the light screen. He then ripped into the ultrasound papers like a kid with a new comic book.

I waited but no question came. He didn't ask how or why and he was pleased.

I'm trying to remember how we changed subjects but I explained about the Tamoxifen, and the side effects. I made it very clear that these were not bad enough to justify any anti-depressants. Not even sure if they're really "hot flashes". I kind of get warm and sweat sometimes? So I did this... and put a mini ziplock with the odd looking homeopathic remedies on his desk. "I went to see a Dr. B..."

I thought, he won't like this! So wrong I was. He knows him! Dr. B. has worked with oncology patients for years. His remedies actually work!

Dr. G., a homeopathic sympathizer?

Well, I had to so something... Can't say yet if it works... Thought it couldn't hurt...

Then he asks carefully "But are you still on the Tamoxifen?"

"Um, you told me that I had 100% markers for both hormones. How many cancer patients even have the option of taking a pill to reduce the chances of a reoccurrence?"

He puts his hand over his eyes and leaned back in his chair. "I don't know how many times I repeat those words every week. But they have side effects and want to stop it..." I assured him that stopping wasn't on the table. I don't want this again!

I went over some odd points. Soy products are fine.

So we do the exam. I was a little concerned about the pain under my left arm. Every BC survivor fears the dreaded lymphedema (look it up if you want, not pretty!) which can show up long after the lymph nodes were removed. No, it's not that. I explained about the swimming. He explained that my flesh, frozen by the rads, is coming back to life slowly and the swimming is pulling on it. That's all. Promise.

The lump is still there but it's scar tissue and might take ages to leave.

The exam is much more thorough than usual. He really presses down on it. Doesn't hurt.

He says the scars look good. I think they're ugly but don't tell him! Softening up well but I think they still have a long way to go.

I dress and sit back down at his desk. He's looking at my results one last time and putting them together. I bring up the Dreaded Subject. I explain about the strange periods. Um, wondering if you wanted to...take anything out?

No. Not even with the odd cycles? "That's just the Tamoxifen!" Well, yes, it is but Tamoxifen does carry a slight risk of uterine cancer and BC survivors also have a slightly higher chance of ovarian cancer. I'm 50 and I was convinced that he'd mention removing some stuff. I can't say I'd be against it either.

No. No need to remove anything. No further surgeries needed.

I kind of let it drop because that's really more the call for the gynecologist. Also, I'd need another surgeon anyway, since he just does breasts. I don't think this subject is entirely off the table but no use discussing it further.

"You realized everything worked out really well for you. You know that..."

Yes, I did, I assured him. I told him I'd had some bad news a few days ago. I can't go into details but wanted to know if there was anywhere or anyone who specialized in Triple Negative Breast Cancer (TNBC). No, he said "I hate that one. We all see it." Not comforting! He made it clear he can't talk about another case...

"You realize how lucky you are. Are you..." and the word he used in French was "contente" which is happy/contented/satisfied (as opposed to "heureux" which translates as "happy")

I'm contente. Yes, I know. I don't take it for granted. I'm not sure if he really believes it or not. It doesn't matter. "Don't forget these" he says, handing me my envelope as I leave.

I did not mention the MRI Dr. N. has planned for the fall.

He originally said once a year but the secretary says he wants to see me in 6 months so I book a date for Dec.

Informing myself about BRCA

I got a reminder of my BRCA testing. Of course, it was months ago that they called me in the store. I dropped the cart and ran outside (luckily, it was a small store and they were cool with it).

They said to call if I had to cancel. I decided to call anyway, and just make sure I know what to do. I have to go back to that wonderful cancer center again. It's on the ground floor. I'll take the letter instead of the orders, just to prove I'm supposed to be there (am I scared of their reception or what??)

So my new homework project is to get information about the BRCA gene mutations. They let me join the BRCA sisterhood group on FB. It's quite enlightening. They make it much less scary.

I want to see this "Decoding Annie Parker" movie but am having trouble finding here in France. Might have to wait on it...

This is a good documentary. I'm watching it now. It's kind of long but watch it soon, if interested. Apparently, it's only available for awhile.

http://www.cultureunplugged.com/play/9605/In-the-Family

It's easier for me because I've had my children. Since my sister was negative and I don't have the heavy family history. I also didn't have a type of cancer associated with BRCA. I'll be very surprised if I'm positive but I want to know. I still want to know why it'll take so long to get the results.

But I'm realistic. I'm still Ashkenazi Jewish and have had breast cancer.

Tomorrow, I finally see my surgeon, and happily hand him over the results of my ultrasound and mammogram (which he thinks he's going to order himself). Oh help.

Homeopathy-Keeping an Open Mind!

Finally got to see the homeopathic doctor that Celine, my cancer nurse, recommended. First, it was a nurse who sent me. Second, this is a Real French Doctor, not some guy with dodgy creds with an office. I wanted to keep an open mind about this...

I'm such a ditz, wandering around Place Kleber when I got the bright idea to look him up. Ugh! Not far but this is the second time I've "decided" where the doctor is and went to the wrong place. I needed the walk anyway, since I couldn't go swimming this morning.

He came in, introduced himself and a verrrrrry young intern who took me to examine me. He went through my whole history but wasn't interested in my now-infamous big bag of X-rays and records. I went through drug history; morphine, codeine, antihistamines, bad reactions to them all. Can't take anything from those categories...  He then did an exam. My tension is good (of course I forgot it) and I weigh more than I thought I did. Odd, because my clothes are a little loose. Swimming? I didn't mention it.

He also had to examine my breasts, which was a bit silly as I just had a mammo and ultrasound four days ago. I said something but he didn't react and I thought, what the heck... Half of Strasbourg has seen my breasts by now anyway.

I noticed that he also does acupuncture. I mentioned it and he confirmed that the doctor does do that too. Oh no! needles!! Then I thought to myself... I've had surgery involving scooping two tumors out of my left boob and earlier, had three babies come out of my neither regions and I'm scared of acupuncture needles?!? Get real and see what he says...

I put my bra on and he came in. He had some intriguing questions. No hot flashes. Maybe I have had them but I couldn't really tell if they were from that or too much clothing, bedding, etc. "But do you feel more hot in general?" I thought about it. We had a mild winter and I was treated during the colder months... I wasn't really as cold as I've been previously...

In fact, I was sitting there in just my bra, with two men in front of me. Remember, this is the Land of No Hospital Gowns. Maybe no one would mind if I put my top on again? I reached over and gingerly lifted it from the other chair.

I explained that the symptoms weren't bad enough to justify taking an antidepressant... Then he stops me. "Never take an anti-depressant with Tamoxifen! It interferes with the..." and then he got a little too technical for me. "But back in the U.S., they give this Effexor stuff..." and he continues that ALL antidepressants interfere and reduce the effectiveness of Tamoxifen.

"Do you have any depression?" he asked, kind of expecting the answer. "Well no, which is one of the reasons I don't want to take an antidepressant anyway. Plus, I keep reading how it helps hot flashes and that's not my problem at all!" I also made it clear to him that I am not suffering from any personality changes (although my husband would disagree). I explained that it's like an instrument that the strings are pulled too tightly. I talked about the fact I can't sit still. No, that's getting better...

I also told him about my gynecologist asking to give it three months. "I'm glad she said that because I noticed a lot of the symptoms have lessened..." Yes, we're coming up on the 3 month mark. Yes, that's why I'm here...

I forgot to mention the funky periods. It started again a few days ago and I am curious how long it'll last this time but I'm supposed to go in to see Dr. G. anyway. I'm not sure if I want my periods messed with using homeopathy. It's not so much a bothersome symptom and not really why I was in this guy's office.

I guess I have to call him Dr. B. Convenient for this blog that all my doctors have different initials! We're running through the alphabet though...

No mention of acupuncture. Must admit that I was relieved! He said that there was a treatment that works quite well on Tamoxifen-takers. The only debate was, do I take it when I "need" it or consistently? I hated to admit it but I told him, the nightmares are all the time. I also can't "predict" when I'll fly off the handle. For example (which I didn't recount to him), some woman accused me of tapping her car's bumper. You have to be careful in France, especially when you have an accent. I really got furious with her and luckily, Daniel was home to intervene. People don't give him crap like they do with me...

Continual treatment. Better idea... I'm to try it for a month and if it's not working, to contact him. Otherwise, I can come back in three months.

At the pharmacy a few meters away, they gave me, not pills in packages like we usually get in France but the pharmacist gave me eight small vials. I told him I've never done an actual homeopathic treatment before so he explained it.

They were in two little groups. I'm to take one on Wednesdays and one on Sundays. Before eating or drinking anything, I'm to wash out my mouth and deposit the contents of the vial on my tongue and leave it there for at least a minute, before swallowing. He explained that the active ingredients are very diluted, which matches what I already know about homeopathy.

Both the pharmacist and Dr. B. said there are no side effects. I guess I don't have anything to lose but I need to wait till Wednesday to start.

Successful First Post-Cancer Check

I wasn't too surprised but I was still nervous.

I did 50 laps in the pool and then headed over to the Mammography center, which was easy as both are in Schiltigheim.

Just before the center, there was a large pond and I saw a large swan family sitting on the side. As Davina is nuts for baby birds (anything really but especially birds) I looked at the time and decided I had a few minutes to do baby swan photos. Eight little ones and the parents were pretty cool. I expected them to get all hissy but they let me get pretty close. I couldn't get a shot of all 8 because one little guy wandered into the grass. They were adorable. Eight is good luck for both Jews and Chinese (since I've decided anything Chinese applies to me too). It was a sign!

I knew it wouldn't start off smoothly. First, she asks for my "ordinance" and of course, I don't have one. I'm under Dr. N.'s instructions. He can explain it to you. "Do you have your records?" I had a whole bag of them. I thought I'd organized it but somehow couldn't find the one I so delicately labeled "Boob pics". Maybe in the car? Wasn't far so I popped down there. No, they were in the bag after all. I had to go back to the desk and pretended I had just retrieved them, or a classic case of "don't ask, don't tell". She takes the "boob pics", my health card and tells me to take a seat.

They call my name and I go in the back. I had just hit "send" to FB with the baby swan photo. The tech starts launching into a speech on how the mammograms work and if I want a second opinion, etc. When I heard the "...now that you're 50..." I stopped her. 50 is the age they start mammos in France. "This is not a normal control. Yes, I just turned 50 but I was diagnosed with Breast Cancer in October." I was getting undressed anyway, so I just turned around and she could see the still-red boob with two scars.

Ohhhhhh!

Turns out, the girl at the desk filled out the normal fist mammogram paperwork. She should have realized that when a patient shows up with an entire bag of X-rays, chances are, it's not her first mammogram.

The tech took the form and ripped it up. "Won't be needing this!" I fell into a whole different category. "Do we do both breasts or just the one that had cancer?" Um. Is this a real question? I decided to bite my tongue. "Please do both" I said simply.

While she was doing the mammogram, I explained that I've actually been screened since I was 20 years old, a BC case in the family, etc. This was not a new experience for me!

The red boob did okay with being squished. I could see that she was a little nervous with it but I assured her that she could even go further, squishing it into the machine.

Finally done. Neither ultrasound room was ready so I had to wait. There are two rooms with ultrasounds on either side of the mammogram room and I remember it was the one on the right where this was found. Please, left room be available next! Luck...

Soon that familiar white coat and white hair swept in. He asked first about my pint-sized Drama Queen and I assured him that she was fine, but still being dramatic. "At least we know the foot's not broken".

I was wearing a sweat jacket, a habit I cultivated during radiation. They don't usually provide hospital gowns in France. Only for my MRI and surgery did I get them. I now bring a zip-up fleece jacket with me, so I don't have to walk or sit around naked. "Are you cold?" he asked patronizingly. "No. I'm wearing my own jacket because in civilized countries..." and whipped out an article on breast screening options my sister wrote about a month ago for the Chronicle, that I had printed up the evening before. I pointed to the picture of a woman getting a hand-held ultrasound, the procedure I was about to have. She was wearing a hospital gown. "Women get to wear (and I said in English) hospital gowns!"

"Yes a blouse (said like "bluz" in French). Oh I hate those! Extra stuff that needs to be pushed aside. They get in the way. No, I don't like those..."

"Guess you don't like these either!" I said, throwing my jacket off (the bra and top were already on the hook and I noticed that he noticed, which spared me the "You were supposed to be undressed" speech). "That's my sister's article..." I pointed to her name.

"It is?" and he starts looking at it, flipping through the four pages in English. I explained that she's the health reporter for the S.F. Chronicle, the main newspaper for northern California.

"LATER!" I told him. "It's for you. Take it and read it later. And by the way, why didn't you ever tell me that you speak English??"

"Yes, I can speak...some... English..." he said, putting the article to the side. Well, I told him that a mutual friend couldn't "believe" that I "never even tried to speak to him in English". I told him what I told her; I'm French, he's French and we're in France...

"C'est normal!" the typical French expression. Then he said one sentence in English and I tried not to giggle. I think he was putting it on, to dissuade me from any further attempts at using it with him. He won.

I was lying down too high on the table and he had me move down. I sighed and put my arm over my eyes. "Are you alright?"

"Just do it! How okay I am depends on what happens now..." so he got started.

"Distract me" I instructed him. "Tell me why you are here in this cold place while you have all those relatives back in California."

So he did. Which actually got pretty complicated. The parents were in France. He escaped by boat with his siblings, uncles and their children after the fall of Saigon, when he was 14.

"Boat people!" he said, in English.  Then he listed all the refugee camps he was sent to. I got a little confused by his pronunciation of "Subic Bay" and "Guam". He also started talking quite quickly and I noticed that his usually very light accent got more pronounced as he continued. I was losing count of the relatives...

They ended up in a camp in Pennsylvania, Pittsburg, I believe, when the decision was made to send the four siblings back to their parents (or maybe it was just the mother by then) to France. One moved to the States on his own later, marrying a woman he met in the camps who had settled in the U.S. He had told me that story years ago during another ultrasound...

The uncles said they had lost everything and wanted to stay in the U.S. One of them died a few weeks ago in California. I was curious where he was buried, since my father and grandmother are in Lafayette (lots of cemeteries there, I told him) but it was a cremation in San Jose. That's where I worked in the cafe with the Nguyen family (only non-Vietnamese employee, I told him). Ah, if I could only find my old boss. Her sons are doctors but I don't know the speciality...

He moved to the affected breast, which is still red but no longer hurts-I thought! Since breasts just kind of sit there on your chest, and normally aren't squished by plastic objects running over them, so there's no way to know. But it wasn't terribly painful and I didn't say a word. I didn't want him to compromise the process in any way!

"You're not seeing anything, right?" I'd ask every once in awhile. "Nothing of concern on that screen??"

"You already looked at the mammogram, right?" He assured me that he did, not that anything has ever been found on mine...

Was it true that he went back to Vietnam every summer. Not every summer. Not this summer. "I need to stay here and make money." I asked if he always went to the same hospital and he said yes. Where? Saigon. Seemed he didn't want to talk about it so we moved on...

He was then talking about his cousin who was a pediatrician, hated it and then went back and got her residency in radiology instead. "How old was she when she did this?" 35. She must have really hated pediatrics! He said it was more the demands of the parents than any dislike of the children but still, she didn't like the work...

Talk about the MRI, I thought to myself. Gotta bring it up!

He was done. "Nothing" he declared. "Everything's fine."

Relief! It's done. I survived!

Bring up the MRI.

He pulled off about two yards of paper to clean myself up. He uses copious amounts of gel every time.

"Now, next fall, I'm getting an MRI, right?"

"Yes."

"...and you're going to give me clearer instructions this time. No more vague 'make an apt.' stuff. What days are you at Strauss?" the cancer center with the MRI machine.

"Monday afternoons."

"Yes, good. I make the apt. with your office or with Strauss?"

"My office. They can do it."

"And I want an ordinance." which is French for the order, which is kind of silly, since he would be ordering himself to do the MRI, like telling himself what to do.

"You don't need one."

"Yes I do. Especially at Strauss. You have no idea what it's like for patients there AND I have an accent. I am not walking in there and just saying 'Dr. N. told me to come' like this time. We had enough confusion today!"

He sighed, rolled his eyes but promised I could get an order.

"...and once again, why do you want to do another mammogram on me? Again, explain to me WHY you want to expose me to even more radiation than I've already had??"

"Well, first of all, procedure..."

"I don't want to hear that word. I want a reason that doesn't involve that word."

"I understand why you don't want to hear that word."

"Good. You realize this means I have to make TWO appointments, one at Strauss and the other here to do this all-so-necessary mammogram? When you've never found anything on any of my mammograms..."

In a small voice he said "Okay. We'll just do...the MRI..."

YES! Victory. I tried not to gloat.

"I see Dr. G. in two weeks. Is he going to get mad at what we're doing without his instructions?"

"Noooo! Of course not!"

Yeah right, but I let it drop.

"You know a radiologist named...?" I asked. I explained about the thyroid. "Where's the three page letter?" he asked. Oh fudge! I left it in the car. I didn't understand what he meant. What's this about three pages??

"He loves to write on and on. Really, it was only one page?" Guess that's a good sign!

"I wish you could do thyroids. Can't you go do some little formation ("course" in French) so I don't have to go back to him? I wasn't too happy with him. He doesn't explain anything. I even peeked at the screen and he scolded me. So the opposite of you! I was tempted to even say to him 'I'm one of Dr. N.'s patients and I'm not used to be treated like this' but I resisted. He even patted me on the back!" Ultimate patronizing gesture...

"I can do thyroids. Of course I can do thyroid screenings!"

"I asked the endocrinologist specifically if I could go back to you for it and she gave me this whole speech about how radiology was this very specialized field and though you're a good radiologist, you're not trained specifically for thyroids..." He looked more than a little annoyed.

"Look, they all say it's not grave (serious). I'll wait to see the endocrinologist in June. It's weeks and weeks to get an apt. but she does explain things, at least better than that radiologist. If she wants me to go to him, I'll go to him. Okay... I'll ask again!"I really can't say no to Dr. N.!

Damn! Why did I leave the letter in the car??

"Go get it and I'll look at it!" Noooo, I can't take up any more of your time. I was throwing my legs over the the table to get up. I was still holding the paper to my chest, not keen to do any wiping in front of him (and really not sure why but I was!) He stood up and had my sister's article in his hand, rolled up and was punching it from either side of his fist.

"You're okay. Really. No problem."

"Good." I answered. He then patted me on the shoulder, but for some reason, it didn't feel patronizing.

Me and my big bag of X-rays headed home. The baby swans weren't there anymore when I drove out.

Waiting three months WAS a good idea!!!

Funny how so many of my Tamoxifen problems have seemed to gotten better all by themselves. I'm so grateful that my gynecologist asked me to wait three months. I think the swimming has helped. I'm still not sure about my cycle. It did some funky stuff and I'm kind of waiting to see what's next in store for that but at least that's a "symptom" that is annoying at worst.

I did 46 laps this morning without stopping. Then 4 more without the fins to round it off to 50. I also did 50 on Friday, going away this weekend.

On Wednesday, I took my complaining Little One to the ped because she said her foot hurt. He wasn't too concerned. Xray? Perhaps a good idea. We had a green stick fracture with Talia and a sprain with Ronnie. Guess it's Davina's turn!

Now here is the dilemma; if it needs casting, we do better going to Illkirch which is equipped but kind of far. I took Ronnie straight there because I was sure he'd need something done. With Davina, it was less obvious. The temptation is to go back to Adassa, which has no orthopedic or emergency dept. but, Dr. N. and his partner can get someone in there faster. Taking anyone to Hautepierre is out of the question unless it's a dire emergency. That's where they almost sent me to give birth to Talia and I pitched a fit that was only appeased with sending me to Dr. N. I waited there for hours with Talia's broken arm. It seriously ranks lower than Strauss in my book!

I asked Davina, since she's old enough. We can do your X-ray at Adassa, nice and close, and hope it's not broken OR drag down to Illkirch. Don't let me influence you!

Davina couldn't get in till the next day but it's like 300m from her school. She was fascinated with the equipment, as she always is with medical stuff. They did the X-ray and I was wondering which doctor we'd see.

I was back in Dr. N.'s office, looking a bit brighter than when I found out I had cancer, thanks to his opening the shutters a bit more. I think I've never seen his office looking so cheery! I sent Davina in first and he immediately said that she was fine. Nothing was broken.

I said to Davina in English (since I now know he understands) "This is who plays volleyball with Aleksander's Papa" and he laughed. "They're together in Talmud Torah". Dr. N. looked confused. "No, his wife is Jewish, not him and our kids are in the same class." He still looked confused. "Talmud Torah? Religious class!"Then he got it.

I told him I'd see him in exactly a week. He mentioned in conversation that his schedule got messed up due to an uncle who died and he had to attend the funeral in California.

"You have relatives in California??"
"Yes, outside of San Francisco, a small place..."
"Where? I'm from outside of San Francisco."
"Do you know Lafayette?"
"I'm from Walnut Creek."
"I know where that is! I took the train to San Francisco."
"Yes, the next stop after Lafayette. You mean BART."
"Yes, the BART train..."

Then he lists all of his family members, what speciality they're in and at what hospital, including one where my sister was born. Most of them were, also radiologists.

"Okay, I know about medical families but was that 4 or 5 of you in the same speciality?" I think I'm in the presence of someone from the Royal Family of Radiologists, on three continents!

He looks at me in all seriousness and says "Well, my brother-in-law is a cardiologist..." I really tried not to burst out laughing.

I glance at Davina, being completely ignored, but looking highly entertained with it all. She knows Lafayette as being where Grandpa works. I had to mention it. IF any had high schoolers, they probably had my stepdad.

My mom was actually really thrilled to hear about this as her radiologist is overdue to retire. Next time, I'll ask, not necessarily for one of his many radiologist relatives but simply a recommendation at that hospital. But it would be novel if it were one of his relatives; my being treated by him in France and my mom by his cousin or whatever, back in California? We just need an insider suggestion.

My appointment is in a week. So dreading it! 

Make My Day!

I try not to overshare this adventure on Facebook. The message I want to share is about breast density. California has had this law for over a year.

A childhood friend was following along, so she took a look at her own records. It was clearly marked on her mammo that she was also Fibrocystic, apparently with the note "results: inconclusive".

She confronted her doctor with this fact. The problem is that she's been waltzing out with supposedly clear mammograms for ages! She told him my story. He wasn't keen on using the ultrasound. He did come up with a good compromise: breast MRI.

Of course, they found something. She's getting it biopsied today and they're pretty certain it's benign, as most biopsies are. Kind of a stressful way of finding it out. I'm wishing her luck today and hope this is the last she time she has to go through this.

It's a nice feeling that what I went through has helped to get someone else better care. Of course, in a Perfect World, doctors would tell their patients that they're fibrocystic and they wouldn't need to confront them and have to take it upon themselves to demand further screening. Sigh. How many women are out there not knowing??

Tamoxifen woes again

I thought that Tamoxifen would keep me from getting my period. Now it's nonstop!

I had a 3 week period, followed by 3 weeks off. Small normalish period then a week off and now, a week ago, it started up again. Doesn't hurt. Just a pain.

Wondering if going on vacation messed it up, taking it at erratic times. Not sure.

I really don't want to switch to an AI. I want to stay with the Tamoxifen, especially now that the symptoms are less.

I'm wondering if I'll hear the word "hysterectomy". They'll probably make me wait for my BRCA results, which would mean getting it all out. I'm second-guessing...

25 years ago yesterday, I landed in London and got my immigration stamp. I'd live in London for 6 years, then Hong Kong, then France... Basically, I've now been outside the U.S. over half my life. Hard to believe as I only got my very first passport at age 21. 

Coincidences (and not just because Strasbourg's too small for my cancer, this time!)

Funny, I wrote that and mentioned both the oncologist and the friend who's Stage 4. I realized that her oncologist is in the same city, so I took a stab at it and wrote him back. Do you know...?

Yes, good friends.

Okay, two oncologists in the same city, on the East Coast, know each other. Big deal. Fine. BUT one was helping out a breast cancer patient in FRANCE and the other is treating another patient IN CALIFORNIA and the two happen to be friends too?? We're talking about major geography going on. Plus the fact that both he and I met his wife while living in London, so let's throw another city into this story...

The other Stage 4 woman is out of ICU but still in the hospital. 10 days. That's an eternity! I was driving everyone crazy after 6 days! Especially with kids. You kind of imagine what they're getting into... I hope we get good news soon.

I kind of get annoyed at anything I read about mammograms starting at age 30. It's wrong on too many levels. First of all, there is no effective screening method that can be done large-scale that doesn't have radiation involved. I was followed, not by yearly mammograms but occasional. I would guess at perhaps every 3-4 years, with the absence of any symptoms. Okay, I always had cysts so checking myself was a little useless. There was always a lump, or two, in there. Officially, I don't have a family history. Cousins no longer count. I call myself highER risk, not "high risk".

Here in France, they start mammos at age 50! Someone joked that I'd get the notification soon. Thankfully, someone stopped that memo and I didn't get anything in the mail. That would have been a slap in the face! They also only do them every two years, not yearly. They still caught mine! Really early too.

If someone does have a strong family history, then the story has to be rewritten. I had no problem getting mammos and ultrasounds done earlier for my fibrocystic problem. I think I had my first one here while still under U.S. insurance. So both systems paid for them, based on my condition, without a family history. Paying for a few screenings is less than paying for BC treatment! This disease passes quickly from being what I had, what I call a "health event" vs. a life-threatening menace. 

Good side effect or bad??

The Tamoxifen is giving me really strange nightmares. Every night. I'm also waiting for my period but who knows if it will come. I'm not concerned.

But the real issue is that I'm constantly on the move. I get very nervous, sometimes for nothing. I still am hesitant to take anything. Haven't been at the computer as much. Good thing? I can't sit still! At least, I'm getting everything done around the house.

So I have to evaluate this on two levels. First, will I mellow out? I may. Hate to go for the drugs for something that fixes itself. Then, I really have to figure out is this really a problem?? 

The solution is an anti-depressant, which brings me to my "real" problem. I'm not depressed. Quite the opposite. I'm scared of taking an anti-depressant, thinking it could turn me into the Happiest Person On Earth. I think I'd drive everyone crazy. I'm actually feeling very fortunate and positive these days. Beating cancer is its own high, perhaps. But the whole experience has put the very typical perspective on my life.

I remember Lisa, may she be resting in peace, said that other the fact that she had cancer, it was the best thing that ever happened to her. She was putting her life back together while in remission. She became interested in nutrition and wanted to study that. But the cancer returned and that never happened. She was 39 and that was in 2000.

The nightmares don't really bother me. I figure, they're better than the nightmare of getting cancer again. I also take the attitude that I'm lucky to take a pill to keep the cancer from coming back. That's something other cancer patients can only dream of! It empowers me.

I lived with some coworkers in London, one of which went on to marry an oncologist. She said he'd be happy to help. I kind of waited until it was the right moment, when there was something specific, and with this follow-up debate, I thought this was a good opportunity.

We did it through Facebook. I went through some of the details. There were a few points he needed clarifying. But basically, my care was good as is my prognosis. It was nice to get that confirmation, in English, from an oncologist in the U.S. He lost his own mother to this beast and I'm curious if that lead to his career choice.

Possibility that they could pass through here in June. That would be fabulous, not just to see her again, meet her husband but her son is the same age as Ronnie.

On one of the private FB groups, there is a woman who is in the hospital (back in the U.S.) She's stage 4 and she wanted to know about my Stage 4 friend back in the Bay Area. I contacted her privately and explained some things. I really tried to be positive. She has two daughters, about my kids' ages. I'm really praying that she's okay. She seems to be such a nice person, up against such a scary diagnosis.

Stage 4 women (and men) are often shunned from support groups. Apparently, they "scare" the others. They wouldn't scare me, at least not at this point. Just seems sad that our "pink sisters" who need the most support, aren't getting it. Stage 4 can't really be cured but it can often be halted, controlled and stabilized. It's precarious and not ideal but there is hope and they can get on with their lives. I know someone who is 7 years past this diagnosis and she's working, traveling, etc. She did have to fight to get treatment but something is working.

I feel a certain tie to Stage 4 women because often, they have the same fibrocystic/dense breast condition that wasn't diagnosed and relied solely on mammograms. I could have easily been one of them. I could have had another 4-5 years of clear mammograms before anything could have been seen, and then, it would have been a much more advanced stage. There are other reasons, ranging from being too busy to get their screenings, like Elizabeth Edwards to really aggressive form of the disease.