Questions answered

Sigh of relief. Judy, the nurse who did my chemo training and who is the nurse supervisor, called. We just weren't connecting by phone.


The why of tamoxifen--as part of my whole treatment plan including, chemo, radiation and tamoxifen, my risk of recurrance is a little below 10% at 10 years. If I did nothing (no chemo, no radiation, no tamoxifen), my risk of recurrance is 20%. That's based on the Oncotype DX, the test done on the tumors in California.


How will Dr. Paul know it's working? By bloodwork taken at each visit: CBC, liver enzymes, electrolytes, tumor markers. Also by any side effects I tell him.

I do not have to get a baseline bone density as tamoxifen doesn't affect bones. When I take a post-m drug, those may hurt my bones so we'd scan then.

I also let her know how my nutrition consult went with the person she recommended. I went in June but never had the chance to let Judy know. The nutritionist gives free lectures at the university hospital. When she met with me, she "lectured" from those handouts. She didn't want to answer my questions probably because I was interrupting her "lecture." I didn't get the copies until after she was done speaking. She also wanted me to take certain supplements that Dr. Paul said not to take. In fact, he doesn't even want me taking a multi-vitamin. "Get your nutrients from food." I think girls should go to the free lectures, because they are free. I went looking for basics with specific emphasis on cancer health. I did learn things but she didn't actually go over any basics. I'll copy those sheets for Judy and she'll see if there's something else for me. (Oh great another co-pay...except that I need the info...)

And she will put a note in my file requesting that I do not see med-students. Before we talked about them, I asked her to pretend she didn't hear my question if she wasn't the person I needed to talk to. She thought that was funny. I explained how it seemed that the med-student hadn't reviewed what I had talked to her about with Dr. Paul, etc. You've already heard it so I'll stop there.

Bostonese

So some Colorado reporter was getting tips on talking like he's from Boston. I'm watching News 2 at Eleven. The guy doing the interview did pretty good saying "Manny hit that ball wicked hard over the green monster." The guy in the colorado studio then started saying "monster wicked" in a crappy Boston accent and then called Ben Afleck "monster wicked." Oh boy. so not the way to use "wicked." Then he told Ben the Sox were as bad as the Yankees in regards to their payroll. Could be but what an insult.



Here's a clip about The Elms, a bar in Denver that all Red Sox fans go to: http://cw2.trb.com/news/local/morningnews/kwgn-chris-parente-visits,0,4506450.htmlstory Check out the clip "The Place for Red Sox Fans in Denver." It's just fun.

continued...

It felt surreal is how it felt. At a breast cancer fundraiser no less. He insulted the Asian wig shop owner also. So I said thank you and left. I wonder how many other women he insulted that night. Unbelievable.

To enjoy more of our night out, we decided to go find a big screen TV in a bar to watch that Thursday night game. The one where the Red Sox decided to start winning. We don't go out to bars. We had no idea where to go. The ones we were driving past, didn't look like we'd fit in. Although we did contemplate a biker bar where I know they wouldn't care about what kind of hair I had. We decided on Indigo Joe's. A smallish kind of place which had kids eating dinner in it. That seemed safe enough. We got some appetizers and a beer. There weren't any big TV's. It was still good to watch.

I found a pink Red Sox baseball hat with a "B" on the front. The hair incident nudged me to try it out. Jay and I talked about how the other hats send mixed messages and maybe that's why people stare. I can't really walk around with a big sign saying, "I'm Christian, married, not making any kind of religious or other kind of statement." However, Jay said I should just wear the pink ribbon. I hate advertising the pink ribbon. But I decided I ought to try. I put it on the back. Saturday morning at breakfast, no problem. I wore it to Aaron's school carnival, no problem. I wore it to a card store and not one woman would look at me. Even the cashier didn't want to talk to me. So I'm thinking a little ignoring is fine for now. I went to a wonderful shop called Santa Fe Pottery to look for a wall pot for a philodendron. I broke one of the ones that came with the house in our den. It was like being in Santa Fe. Cats roamed the store. There was a huge court yard between the main house and I suppose what used to be servant rooms on the other side. Lots of small rooms with rugs, pottery, brightly colored Mexican pottery, spices, candles, oils, furniture. Just like Jackalopes. As I was leaving, the guy ringing up my order asked about the hat. Stacy told me men would be a better support at times. Women get all wonky. Anyway it was good to mention the breast cancer but then go on and talk baseball. He's not sure the Rockies can overcome the big boys from Boston. But they did it before, at Fenway. They also swept the Yankees. I think it's any one's game. I'm going to put a CR on the opposite side of my ball cap. I just can't make up my mind. We followed both teams all season. I love them both.

Our first snow and Nate's snow couple in our back yard. We had about 7 inches on Sunday. The roads were clear yesterday morning. It's supposed to be 60's today and 70's tomorrow.

The first of way too many quarterly oncology appointments

I went to my appointment on Thursday. Left without many answers. Why? Because I was dismissed to a 4th year student who took all of my initial info & questions, because she didn't review it with Dr. Paul before he came in and because he seemed to be preoccupied with something else. I only realized she didn't review it with him as I was thinking about all of it on Friday. He seemed to think I was already on tamoxifen when I had asked her about alternatives. I didn't really want a review of the side effects, I need to know why I need it in the first place. What benefit will it give me? Back up, right to the beginning. I did have my questions written down and I did ask them. There was a breakdown in between docs. This period is so critical for me and most women. Feeling dismissed to a med-student, isn't good. Let me also say I wasn't endeared to her when she couldn't even do the math and called me 51. If you can't subtract, ask the patient her age. I'm going to choose not to allow med-students to do any of my appointments. I was uncomfortable in July and this time. Two times is enough to know it doesn't work for me. If I have to pay for the specialist, I want to see only the specialist. While we do have great insurance, the co-pay for specialists is $50. (Two visits equal just about a week's worth of groceries. You see where I'm going with this...)

I did learn that most of the alternatives are for post-menopausal women. I just can't believe that tamoxifen is the only one for pre-menopausal women. While we're on that topic, the chemo shut down my menses. He said it should return. Time period is vague. But even if it hasn't returned in two years, it may come back then. How irritating. You think you're done with something and BAM there it is again. Two years later. Monitoring my estrogen levels is futile because they go up and down a lot. He said we'd have to monitor them for years to truly know if I was post-m. And if I did take one of those drugs for post-m girls, if my period did come back, it would have been a waste taking those drugs.

The other thing we didn't talk about was my future scans. How do I really know that the chemo & radiation did what they were supposed to do? I am confident that the surgery took the cancer out. I had pathology done on that tissue to confirm it. Self-breast exams seem a bit ridiculous at this point. But I am doing them. I'm right back to the beginning when I couldn't feel the cancer anyway. And no one else could either. Perhaps MRI's and PET/CT scans come only if they feel something. Mammograms come after February. Maybe he talks about this at my next appointment. (Yet if the next appointment goes like this one, I won't want to keep coming every three months.) I feel like I need more info as I look over this three-year-every-three-month-appointment-abyss. I did leave a message with the nurse who taught the chemo class. If I need to talk to Dr. Paul about any of it, she'll let me know. I also have a nurse case manager to call with my insurance. I hope they can help with a timeline and all my questions.

I'm feeling more confident as I've been able to put my concerns in a list for the nurse. It does get discouraging when you do have a list of questions and you do ask them and then you have to ask them again because the first person didn't talk to the real doctor. For the cost of all this in time, energy and don't forget money--I need to leave feeling taken care of. Not just given a prescription.

Maybe the next time I'll tell you what it was like to be told I had a wig on and should go to a shop "if I wanted anything done with it." That's code for "it looks bad and you need to fix it." Oh and this was at a breast cancer Cook for the Cure event. Sorry girls, I know you wanted us to have a good time, and we did until that very moment.

Tamoxifen or Not Tamoxifen

"To be or not to be" in case you missed my reference above. Ok, so you probably all got it.

I go tomorrow to see my oncologist. I'm set to get a script for tamoxifen. It's for five years. After five years, it's no longer effective. I'm going to ask about alternatives. I'm not liking what I see on the net about it. Jay reminded me that the people with problems are the most vocal. That's true but usually there's some truth to be found in there anyway. I went headlong into taking Lupron when I had the endometriosis in 1999 before I had any info. That wasn't a good drug to take. But I also had a lousy doc at the time. I definitely know I have a better one now. I also want to know what happens if I don't take it. Percentages I guess. Although percentages aren't the whole story. I also need to ask about long term side effects from the chemo & radiation I had. I know most of them but want a refresher.

My days are filled with taking Aaron to school and picking him up. Nate walks or rides his bike. Doing laundry and trying to plan dinner. I'm tired just thinking about it. But really, we are doing normal things. I am grateful.

Insurance update

Apparently, the audit was done today and we do not owe that daily co-pay. Only three claims of the many since Aug. 1 (some days had multiple claims), weren't changed. I don't know which ones but it should be available on their site next week for me to check. I now feel a little bit more encouraged, but I'll believe it when I see it.



I made the Chocolate Stout Cake from the Barrington Brewery in Great Barrington, MA for Jay's birthday. Here's the link: http://www.epicurious.com/recipes/food/views/107105 It was pretty easy once I figured out the many bowls it says to use. I cut the recipe in half and used two 9" pans with 1 1/2" sides. Great chocolate cake.

Insurance woes

The insurance stuff going on that I mentioned earlier has our new insurance insisting that I pay a $50 co-pay daily for 29 radiation treatments. Stop gasping, that's what it'll cost me to see a specialist from now on. That co-pay doesn't go towards the deductible nor to our out-of-pocket costs. It's just money that flies out of our pockets on top of our monthly premium. However, we were told that we wouldn't have that co-pay in July, RMCC pulled info off of the insurance site that indicated we wouldn't have a co-pay, and the summary we have indicates that there would be "no charge" in a physician's office. As of yesterday, the insurance company will be auditing all of the claims because they found a mistake in their system. Yet I'm not encouraged. I'll know when they give us an answer within two weeks.

Pink Celebration

Here I am as a daughter of the King. I know I also look like a princess.

Front: Carolyn, Nancy, Gwen Back: Kristen, Tina, Wendy, Laverne, Carol, Nadine, Addison (baby), Mandi, Kathy & Karen

Gwen with Karen's son, Brandon, and Karen. This was our salad buffet with Kathy's Mom's pink glass dishes. It says on the upright plate: God is Faithful.

Kathy from my Newcomer's group wanted to celebrate my accomplishment of completing chemotherapy and radiation, to acknowledge the end of this part of treatment. My oncology-radiologist asked me more than once, "How are you going to celebrate?" I'm thinking, "Celebrate what?" I've had very mixed feelings about it. I thought this time in between completing radiation and seeing the oncologist (Oct. 18) would be good for getting back to normal. And it has. Yet I'm reticent about celebrating. There's more to come. I'm on the lifetime plan. I haven't quite put this phase in it's place. And then I remember that God holds the plan. He's not going to tell me all of it all at once. He is faithful. He even reminds people to pray. Especially Kathy, in the middle of the night. I'd bet there's more of you that He wakes up. He won't forget.

It is so wonderful to celebrate with women who have been there with me through all of this. I don't say this to offend those of you in Massachusetts who couldn't be here with me. I have needed your prayers most of all. God knows why He did it this way. We don't, but it will eventually be revealed. One reason I had to come to Denver to do this was because Jay doesn't travel anymore. Another reason I had to come to Denver was because our insurance was better. That first insurance plan got me through the largest part of my initial treatment. Now this second plan that Jay's company chose leaves a lot to be desired. The good news is that we only had to deal with it for my radiation treatments. Still don't have any real answers from them or even the actual policy. That's right, we don't have the actual policy, just a summary and just an overview. This plan went into effect Aug. 1. They've inundated us with paper so we might get lost in it and not really know how they manage the plan. We meet with a rep on Tuesday so we'll see if they have some answers. It's not about them not paying, it's about how they have processed the claims. And then they even process two claims differently even though they were for the same thing, but a different day. No rhyme, no reason.

Back to the celebration--Kathy decorated so nicely. I did feel special. Once I got over the initial surprise and my initial tears, I could enjoy our time together. Thank you for making me feel loved and for just being there to celebrate with me.

The Walk

We went to the K-9 walk for the cure. It was really too much. Too many dogs, too many people. But we did meet some interesting dogs. Lots of the small dogs had on their pink fluffy coats. After that, we went to play in the park with River & Hailey.

We walked through the booths. One was for imaging services (mammograms, bone scans, CT's, etc.) The woman asks me, "Have you had your mammogram this year?" Moment of hesitation, "Um, I have breast cancer so I've had lots of them." Longer moment of silence, I then thanked her for asking and told her to keep asking. Lesson to me, don't be quite so pushy when I ask women about it. At this point, I realize it isn't just the mammos that women skip, it's their whole healthcare plan--skipping annual exams at the GYN, skipping the dentist. I wonder what the stats are on that.