Tidying up a few things...

I think my gynecologist was in a weird mood on Tuesday. She was making a few pointed comments about a number of issues.

First, she says, once a year is enough. MRI's not necessary. She even accused Dr. N. of doing it for the money!!!

Then she said a few things about one of my husband's doctors I can't repeat, which is too bad, because it was funny!!!

I was subjected to the exam and the wand. The infamous wand!! Her comments were funny too. "That ovary isn't doing anything anymore! Guess Tamoxifen is working..." I wasn't too concerned. I wasn't using it anyway.

Really hate the wand though. She wants to make sure that I'm not getting cysts, since my body has proven that it's good at that!

She's not worried about the cysts. They go away after a cycle. The three week period, which only just finished, is not a concern either. Funky stuff happens on Tamoxifen.

The stress? Well, she declared that I wasn't exactly a mellow person to begin with. Okay, can't argue with that! But... She just wants me to hang in there. I must admit, I'm not keen on taking more medications. I didn't push for it.

She said that I "hadn't gained weight" which was good. Gained?? I lost. She didn't even weigh me. Ugh. "Be careful because I've had some patients really gain a lot on Tamoxifen!" Oh so encouraging!!

What to do? Who to follow?? Let Dr. N. make money off of me. So what. I want to be checked. I want my MRI's. I'm not going to belabor this anymore. They're not the ones who risk a reoccurrence! What's a little more radiation at this point?

Later that evening, I was sitting in on a parents' gymnastics meeting, bored, looking at my calendar and I realized, Dr. N. had said to simply call and make an apt. and he's take care of the rest. Famous last words. No, that's not going to work. If this involves a mammogram, I have to go to Schiltigheim on a Thursday morning. I glanced at the calendar. He said late April, early May.

We have vacation and are going away in April. Then, the first two Thursdays in May are holidays. Great timing!

I waltzed into the clinic, since it's near the school. Hate doing stuff like this on the phone. I tried to explain and it was a little confusing, even for me. Even if it weren't in another language!!

He came in, shook my hand and ran off. Um, we have a question here?? I didn't like the serious look on his face and was just grateful it wasn't because of me! So a secretary chased him down a few minutes later. June is fine.

June is NOT fine but I didn't say anything. I'm seeing Dr. G and I'm having the genetic testing. I want this over with first.

I have to call Schiltigheim myself and they gave me the number and address. I called this morning. I asked her directly, May 29th, right at the end of June, a week before seeing Dr. G, is there a Thursday morning slot with Dr. N.?

Yes! 11am. My first post-cancer check. This is the stressful one for most survivors. I'm just not going to think about it. I'm going to concentrate on my son's Lycee admissions tests, our trip to Cannes and the Rest of My Life and try to get to grips with this Tamoxifen...

But my Big Victory was getting back in the pool again. My card was expired. I'm not getting a new one just because the pool is closing in July so I'll renew it then, if I swim a lot in the other pools. I know myself and if I have to drive, I might lose my motivation, not to mention the other pools' schedules...

My suit fit differently, and not in a bad way! My boobs looked the same. There was less me inside! So happy.

Yesterday, I did 24 laps. I was slow but didn't hurt afterwards. Today I did my old 30, just like before. Perhaps a tad slower but it felt sooooo good and seems to help the stress. The last time I swam in that pool, 30 laps, was the day before my biopsy, in October. 

Remembering my first ultrasound

I see my gynecologist today. Wonder what she'll say about my Tamoxifen woes. The three week period finally stopped. 

Funny because I'm not depressed. I'm jittery kind of like I've had too much coffee, which I've had to stop. Well, somewhat... I like my coffee but I try to reign it in. I don't want something that will just add more side-effects. I'll see what she says. I trust her opinion. 

I had some really upsetting news a few days ago. I grew up down the street from a family with three, very pretty sisters. They had a younger brother who was actually from their mom's second marriage. Turns out he's bought the family home. Our friends are neighbors so they were talking to him. 

Two are dead from BC. I was gutted. I knew the youngest best and she's still alive. This means that we've had three BC cases in our neighborhood, two brain cancers and my sister with her lymphoma. We're talking about two or three streets, maybe three square miles at most! Three cases of BC and only I'm alive... 

And there are rumors of another cancer death. I'm friends with his sister on FB and found her mom, whom I friended as well. I'm going to ask them....

Now that the treatment itself is over, I'm kind of mulling over the entire experience. I was thinking back to my first ultrasound when I was 20. Kind of hard to get my head around the fact that I've been dealing with this BC issue for three decades, yet, still escaped with breasts and hair intact. 

When I was 20, I (well, actually, my boyfriend at the time) found a lump. 

I freaked! I was sent in to have a mammogram and there, they saw I have dense, fibrous breasts. The cousin who at age 42 (I knew her parents but not her) counted as "family history". 

My mom was surprised. "She's only 20!" The doctor said yes, very unlikely to have it this young but he added, one of his patients was 24 at diagnosis. 

OMG, what did I have in store??

So because of the dense breasts, they explained that I needed an ultrasound. The lump did not look suspicious but I was told, this is probably not the last. I had had one before when I was Dx's with lactose intollerance. I thought it was cool, looking at all my organs. 

My mind was put at rest and I was glad I didn't need any other procedures. But I was unsure what I was facing. They didn't seem to committed to the risk I faced. Fibrocystic? Dense breasts? Probably made BC slightly more likely. Enough to inure that my insurance wil pay for periodic screenings this young. But did I really face the possibility? The jury was still out. 

The door opened and the tech's face lit up when she saw my mom, who accompanied me. It was the mother of a classmate. 

But the story really is that the classmate had an older sister, whom I knew just in passing. Jealous boyfriend. Murder/suicide in her home. She had come in to it. Unimaginable... I had been to her house, been in the room where later it happened...

So while I'm having the ultrasound, the mom was talking about these events with my mom. Obviously, not the time for questions (trust me, many more u/s's in the future when I could ask questions!) 

My heart broke for her and what she and her family had been through. My worries over this lump seemed petty and it kind of put it in perspective. 

I'll never forget, three decades later, she kept saying "You just can't ask 'why'. That can never be answered. You can drive yourself crazy with that question so just don't ask it..." Her words echoed in my head over the years, understanding at an age when I quite frankly, didn't have the maturity to really understand. 

When I was Dx'd, three decades and a continent away, in a foreign language, the first thought in my head was first, thank goodness me and not one of my kids.

Later, it was found to be one of the more curable forms and I didn't even have to go through chemo. After 3 decades of screenings, I was given the Fast Pass to the exit. After 3 decades of the Monster In the Closet, which I did a good job of ignoring, it turned out to be an easily clobbered lizard.  

And I didn't ask why. I at least owed that family, and that sister whose life was so short, as much! 

Tamoxifen victory!

My kids have head lice. This is not good. I have spent the whole day doing laundry but there was one little advantage...

I know which pharmacy, it's in Cronenbourg (of beer fame) and they carry my favorite lice killer stuff. I go in there and I'm talking to the pharmacist and ask, out of curiosity, is there a lactose-free Tamoxifen? She asked which one I had and I told her. She was only a few minutes on the computer and say "Voila!" Um, tell me that it wasn't that easy.

We don't have it in stock but we can order it for you. Come back at 3:30!

Actually, it was on the way home from school so I was there an hour later. They didn't have the full 20mg version so I took the 10mg and she gave me two boxes. I have to take two a day.

My digestive system will be a happier place tomorrow.

I even emailed a picture of it to my surgeon, who had said he didn't know of any. Well, now he does! He emailed back "Bravo".

I'm still jittery with it. I bought our tickets for the U.S. so that was a big stress out of my life. I'm not nervous, like waiting at the doctor's for test results nervous. It's more like a caffeine-overdose. I'm not drinking coffee in the morning, though I'll have a cup as a treat. But it's different. I'm wondering if I can keep the stress out of my life whether I can see if this mellows out with time.

Still, the bizarre nightmares!

Now, back to the laundry and washing this stinky stuff out of my hair!!! 

Tamoxifen woes

I just feel nervous all the time! And I've been having my period for three weeks. Probably my fault for starting on the 3rd day. It wasn't much but it just kept it up for so long. It's tapering off now. I was told to expect some changes in my cycle. I'm very, very regular so all this is not what I'm used to!

But the nervousness... it can't go on. I have strange nightmares. One about a boy being kept in a barrel last night and something else disturbing... Can't remember. There are solutions. One is to switch me to an AI (aronmatase inhibitors). Don't want to do that yet since I'm solidly pre-menapausal and AI's are usually given to post-menapausal women. I'm actually not entirely clear on the differences between AI's and Tamoxifen, but I have about 5 years to figure it out. Also, there is an anti-depressant that works against Tamoxifen's side effects but I'm not thrilled to start that unless I know that these symptoms are here to stay. Tamoxifen often has wonky symptoms for the first 1-3 months and then settles down.

I'm officially done with rads. I took the images and letter from Dr. N to nice Rads-Onc lady and she examined me. She seemed relieved that it wasn't anything to be concerned about (because I wasn't overly worried myself). Nice people there but got a little sick of going there. She'll see me in a year.

I took Davina to a Purim party on Sunday, where she was doing a Purim play with her Talmud Torah class. Fun to be able to snap pictures since it wasn't a Saturday or a holiday. One of the moms came up to ask how I was doing. I said it was all fine, done with rads, just ran into a little snag with how the controls would be organized... So I recounted what transpired with Dr. N. Turns out, she and her husband are friends with him.

She starts telling me personal stuff and I stopped her. No! This is my doctor, in a white coat, who sits behind a machine, looks at a screen and tells me whether or not I have cancer. I don't want to hear about Volley Ball or the pool he has or where he lives... These doctors in my life are creatures who exist only in their lairs, do not emerge during sunlight hours and do not mix with Normal Humanity, at least, to me.

"Doesn't he speak English well? (pause) Please don't tell me that he's been your doctor for 14 years and you've never even tried to speak English to him??"

Guilty! No, I learned long ago not to do that for reasons I won't go into now and didn't with her.

Then she mentions how he spends his entire vacation going back to his home country and volunteering in a hospital there. My heart melted!

Now, you can start telling me about my radiologist!

Endocrinologist-finally!

It was a go the second time. My much-better 2pm apt. worked out better than the 3:30. I should have been able to have picked Davina up at 4:15 (can push it later if I call another mom) but 2pm was fine.

She was very cut and dry. She assured me several times that what I have is very common. Probably a third of adults walking in the street have these high numbers and they don't know it. She found the story of how it was found amusing. "If you hadn't volunteered for that study, you wouldn't have know yourself!" She kind of made a face when I told her that I had to pull out when I changed rads centers but she wasn't surprised. I was happy to go back to Strauss and see their Endocrinologist but no...

But she does want me monitored because there seems to be a link between those of us who have been through rads and thyroid problems later on.

She was very curious about my sister's lymphoma and wanted to know about the meds both she and my mom take. Can get that for you. Okay if it's in English? Sure, I'll figure it out, she assured me.

"Lymphoma that started in the Thyroid?? That's very rare. I assume that she was operated on and had it out?" Um no. Straight to chemo. Did the trick! Oh, that's out of my field. I've never heard of this... My sister's thyroid is actually still functioning, after all she's been through.

Absolutely no genetic link, she assured me. I'm kind of curious why but didn't want to go there. Definitely not Hashimoto's Disease and she pointed out the numbers that would be different if it were. Completely different. I'm pushing it as far as my understanding, and frankly, it wouldn't have been that much better in English. I'm kind of taking her word on it, since Hashimoto's is pretty common and I don't have any symptoms. I believe her.

She did take my blood pressure, which is good and felt my thyroid. Nothing could be felt. No nodules or swelling.

I have to have an ultrasound of the thyroid. You or a radiologist? She has a recommendation. I told her that I've having my first BC check in early May but she said no, this is very specialized and I have someone who does this. Radiology has a lot of specialities (so I noticed!)

She wanted to see me per her Radiologist's recommendation but I decided, since I need to do it 6 weeks to two months out, I'd make the apt. with her secretary first, and change it if necessary. I called the Other Radiologist (I'll call him) when I got to the car (I like making calls in the car, not on Bluetooth, because of my accent). They had all my information. They're cross referenced with Strauss. Oh good... But not located there. Strange. At least I didn't have to spell everything...

I also had just enough time to call my sister for her birthday, during which my son just happened to walk by so he said hi too. Then I popped in the lab to get a blood test. The usual lady wasn't there and the one who did it wasn't too hot but I lived to tell the tale. Then they sent the results in a zip file and I can't open it, not that I could read it anyway. 

Dense boob video

I got this from the "Are You Dense?" FB page. Are You Dense is a group trying to increase awareness of my condition. I was lucky and identified at age 20 but this tells the sad story of a woman who kept getting clear mammograms and only learned to late she had advanced cancer.

Get kleenex out!

http://www.youtube.com/watch?v=lQPLMWuTlWQ

Good news and success

I was thinking "Oh goodie, I get to talk to Dr. N." but then when the day arrived to go see him, then and only then, I actually started getting worried about the lump!

Sigh. So I put on my Big Girl Pants and headed down there.

"Oh how are you Madame D.??" they gushed, in serious concern, including the young, pretty blond (Miss "Don't say that to him or he'll be mean to us for the rest of the day"). I updated them, with the nuggets of my adventure they're more interested in, like changing the rads location. "So disorganized over at the Cancer Center!" "Really??" I thought that tidbit might be useful to pass on to another patient, really. I also praised my "princess" treatment at Adassa and said that the rads were just like a sunburn. Everyone was wonderful over at St. Anne. No problems with the anti-hormone pill.

I have learned that people want to hear positive things about cancer and not all doom, gloom and negative stories.

I left out that I've been having a period for two weeks. Some stuff that just doesn't need to be shared!

So what are you having done? Um, the Rx. I forgot to bring it in!

Thankfully, I've learned a few tricks and one is to put all medical stuff in the car, so that it can't be forgotten. Of course, I'm screwed if my car is stolen or burned but let's not go there. So I ran out to my car, made a mess and came back with the paper from the rads-onc lady.

I was waiting in the waiting area. Not too busy. Good thing because he came in and called out "Sharon!"

Truthfully, I think he meant to say my full name and somehow, it didn't quite make it. French doctors are very formal, always shake hands and everyone is Monsieur and Madame.

What are the chances that the other patients thought that "Sharon" is my last name? But then he said it the American way, like Sharon Stone. The French usually say it like Ariel Sharon. Love that association (some Moslem friends in England called me "Ruth", my middle name since they despised Sharon so much!)

So he shakes my hand and leads me to the ultrasound room. Let's me get dressed by myself this time! Oh yeah. Left my bra on. Didn't feel like waiting with no top on. Where are the gowns in France?? I think I only saw one for the MRI.

Of course, he kind of scolds me. He can't say the word for bra. He kind of waves his hand and says "It all has to come off". Okay fine and I flung my Victoria's Secret special across the room and it lands perfectly on top of my affairs.

Luckily, it wasn't hard to miss. I showed him and he fired up the u/s machine. I told him about Dr. G's aborted attempt at extracting fluid. Then, of course, I have to add "I hope he's better with a scalpel then he is with a needle", trying not to exaggerate things. He put up his hands and said "I will assure you, if I go in there with a needle, I will know where I'm going and I will extract something. I'm not stabbing anyone for nothing!"

Oh. Someone's not happy.

"...and it isn't even fluid! Look..." Like I really know what I'm looking at? "Not black in the middle?" I said, trying to show off that I do actually listen to him sometimes. "Right! See, there are your cysts. They looks completely different..." Um... He declared it to be scar tissue. "But it's not under my scar!" "It's still very close. See" he said, taking my hand "here is your scar and here it is. Almost in the same place. You have scar tissue on top but you also have scar tissue underneath. There's probably more further down by your other scar but you can't feel it. We'll monitor this but it's nothing. It's normal to have this after surgery..." Yeah.

I then approached the subject. Dr. G doesn't like questions and he doesn't like explaining. "I explain everything" he declared. So I noticed. "Ultrasound, mammography and that's it. Once a year. That's not what we talked about and I told him so. Just once." I was getting worried that he'd backtrack and that I'd regret talking about Dr. G. first.

"I want my MRI's. Last time you told me I could have MRI's. I know about the false positives. My sister just had a biopsy that was a false negative from an MRI but that's a 'risk' I'm willing to take. You can biopsy anything you want but it shows everything..."

And off he went on the speech about the false positives (which I was trying to cut off by saying it first). Then he reiterated what he told me last fall. Every six months, mammo then...

So how do I go about doing that? I have my GP's support, I explained and an apt. with my gynecologist... No, not necessary.

What?!? I'm now, what they call in France, a "long infection" patient. This gives me special privileges like direct access to my radiologist, without a reference.

Oh. Good. He was still pushing that little wand thing around on the side of my boob. I was happy to let him continue...

All I have to do it call, make an apt. and he said he'd take care of all the rest. And the three month run up to an MRI? We'll deal with that in the fall. We have time. Great.

I asked about his trip to Chicago. They had great weather and one of the storms was moving in as they left. He said the board was full of cancellations but their flight left. Internationals are usually priority, I told him. I also asked about Tomosynthesis, the 3D new technology. "Not for you. Dense breasts. Just like a mammogram, we can't see anything". Oh, the dense breast thing. Talked about that for awhile.

Finally done. He pulled off a big piece of that rolled paper and started awkwardly trying to wipe off all that gel he uses. He always does this and I'm always trying to take it from him without being pushy. Finally able to get back into my clothes and leave, very happy. Fiber thing. He didn't have to even stab me (not that I would have objected), get all my checks done directly by him, no going through anyone else and, he did look around while he was there, so I take some comfort in that!

Back to nice rads-onc lady Monday with my little envelope from him.

Adassa Radiology, here I come, again...

I saw nice Rads-Onc lady today. I showed her a lump I have under my arm. Now, please note, I did not have drains as some women do after a lumpectomy. Then, Dr. G. tried to draw the fluid out and failed miserably...

During rads, my boobs became all hard and red. They were kind of sensitive but paradoxically, they also were numb. Now that the feeling is coming back, the scar is starting to hurt again and I can feel, what I am quite certain, is that lump under my arm, which is a pocket of liquid.

I told her that Dr. N. had said I'd be getting MRI's while Dr. G said no. She said that Dr. G. was citing standard practice. Perhaps I have something unusual? When is the genetic testing, she asked. June but I admitted I'm not too convinced that it'll be positive. I'm almost sure it'll be negative because I don't have the family history and my sister was negative.

She assured me that if I'm positive, I will have no problems getting my MRI's. Oh what a relief to hear that... I think I'll have a LOT more to worry about than MRI's if that test is positive!! And if I chop off both boobs, a la Angelina Jolie, I won't have to worry about MRI's on my boobs at all!

But I didn't tell nice Rads-Onc lady that. I nodded and said "I see".

I had to come clean. I told her about the arthritis in my knees so that's why I saw Dr. N. in between, because usually the radiologist drops out of the picture after surgery. But in my case, I had another reason to go in and see him and we just happened to discuss the care I'd get afterwards.

I didn't tell her that you can be gushing blood but if you're a cancer patient, the doctor will prefer to talk about the cancer than the gushing blood but I digress...

I want my MRI's. Well, she admitted, I can probably somehow arrange them. I told her that I'm seeing Dr. K (the gynecologist) and that my GP supports me. She could see that I was on a mission!

First, the exam. She was happy and suggested I use a exfoliant on it. I told her that I had been hesitant due to the sensitive-ness but she said it's good to start now. Okay.

Then, she suggested I go back to PT to work on those scars again. I do have some limited movement because of them. Loosening them up will probably align my boobs up better, but honestly, they're not that bad and I don't have that much of an ego.

So then I showed her the lump. "We need to do an ultrasound". So I happily asked "So where's the machine??"

She made a little wry smile. "No, you're going back to Dr. N." "...and I get to discuss my MRI's!"

She sighed. She was sure this was nothing but to be absolutely certain, she had to send me back... I bet she's never had such a happy patient being sent to radiology for a mystery lump!

She had her secretary do the apt. I told her that they don't like to deal with me over the phone because of my accent. That's not entirely clear. Once, they asked me what the X-ray was for and I couldn't read the dr.'s handwriting. Sure, the accent didn't help! So I walk in each time. No, you don't have to do that.

The secretary called and said cheerily "I have a patient here, with whom I understand you're well acquainted with..."

Dr. N. on Tuesday morning and I go back to nice Rads-Onc lady in two weeks. My medical calendar is full!

Lactose in Tamoxifen?

I can't believe it. I had a bit of indigestion after taking it. I looked at the pamphlet inside the box. Lactose and not recommended for the lactose intolerant!

I found out about the lactose intolerance the year before I found out about the fibrocystic situation. My dense, fibrous breasts have been less the problem than the lactose problem all along. I've been on the look-out for milk products, and had the occasional mishap for years, especially when I first started flying. Which one ended up more dangerous? Now, they're both coming back to haunt me...

Oh please... Like Tamoxifen doesn't have enough side effects already! So I hear. After four days, I haven't had any but I do have indigestion after taking it.

I went to the pharmacy and one of the girls there (they totally know us!) looked up every single Tamoxifen brand and they ALL had lactose.

I emailed Dr. G to ask him about this. I think he probably died when he saw my message. I'm absolutely sure that no one has ever asked him about this. Probably because all my questions are "firsts" for him. No answer yet.

You'd think they wouldn't do this. A lot of Jewish women get BC and Tamoxifen is often given afterwards. Has anyone in Pharmaceutical Land figured this out yet?

Last apt. with nice Rads-onc lady tomorrow.  

Tamoxifen for the first time this morning.

I even took a picture of the pill. I was nervous and had nightmares last night. Wonder how long any, if any side effects show up. All ready for my first hot flash? Um no!

I understand the hot flashes are to be expected but many women only get them the first month. This is a good month to get them, early spring, not much going on. The kids are on vacation these two weeks.

I'm back in a real bra! It's not entirely comfortable or as before but I'm happy to not have to wear those camisoles. I feel a bit more supported there...

We also went swimming for the first time since my birthday weekend Friday. Again, it was a spring pool, which they have here, not a normal swimming pool with chemicals. I wore a tankini I bought last summer in the U.S. Needless to say, I was the only one in a tankini in Badenweiler, Germany, perhaps ever! I bought it at Target (who can know here??)

I did feel a little itchy the next day but nothing dramatic. The redness has gone down to the point you really can't see it in the swimsuit. The line is well above and could have been seen a few weeks ago but not now. The boob is still kind of hard. That was the biggest "little" problem I had. It makes it stand up a bit more. I'm sure I'm the only one who noticed but I was aware that it's not completely back yet.

Also, the scar is hurting again, not much but I can feel it. Apparently, the rads desensitize and now the feeling is back. I also have a lump under in my armpit that I'm sure is the fluid build-up that Dr. G. tried unsuccessfully to remove. I'm not worried at all because that area was blasted too, with rads. I'll see my rads-onc lady for the last time on Thursday and can ask her then.

I'm coming up with a plan for my "after-care" for lack of a better term. I want my MRI's. I contacted a cancer organization here but have been too busy with airline tickets to call them back. I want to know the procedure, not their opinion on the follow-up I should have.  I'll talk to my gynecologist, already talked to my GP, what else?

I'm also going to discuss this with doctor friends in the U.S. One girlfriend's husband is an oncologist so that might be helpful...

Funny how cancer takes center stage in your life and then quickly recedes to the background, once all the excitement is over. Now, I'm just dusting up from everything.