Don't be Chicken! Participate!!!!

One of the websites I ran across a while ago is Dr. Susan Love's Army of Women. Now part of me balks at the title of this, as men get breast cancer too, but I do understand why this is the name.

One of the things that this website does is that it gathers volunteers for various research studies. Often, I don't qualify, but recently a study came across my email in-box which I did qualify for and which I feel passionately about. This is a study of women who developed breast cancer before the age of 40.

You don't have to be currently in treatment. You can be out of treatment for many years, like me. You can have recurrences, like me. I can't remember if it also calls for siblings and mothers of young breast cancer survivors or not... It does mean that you have to get some blood tests done.

To me, thats a small enough price to pay. When I look back, I shudder at the fact that I have spent more of my adult years fighting breast cancer than being healthy. I cringe at the fact that my daughter doesn't remember a mom who wasn't battling and that my husband only had three and a half years of marriage to a woman who wasn't ill, recovering or living under the shadow....I want the researchers to find out as much as they can so that others don't have to go through this.

Don't be chicken. Please, join the Army of Women. If something comes along that you can participate in, do. With this we might more quickly find a cure.

Frightened or paranoid...I'm not sure which

Breast cancer survivors should be angry....very angry, and the general populace should be very scared. Last Friday, word came out that Wellpoint was discontinuing coverage, or limiting coverage for breast cancer survivors/patients. Since I haven't heard anything else about it, I wondering what the word is...or has the insurance industry squelched it....or are people too ready to throw it into the "so what? I don't have this particular problem.

We all know that insurance companies are out there to make money. The house is stacked in their favor. We also know that when something becomes unprofitable for them, they try to wiggle out of it. So, one of my questions is why did they choose breast cancer over all the other expensive illnesses? Is it because there are now more of us (even though some entities say it isn't on the rise)? Or is it because women are more expendable? Yes...it does sound like I'm becoming paranoid.

I admit it....on Saturday, our answering machine picked up a robo-call from our health insurer....requesting me to call them "at my earliest convenience." When I called this morning, I got a computerized information session, warning me that I should be screened for breast, colon, and cervical cancers...well, DUH! They should know that I had my first colonoscopy in October, and that I am screened every year for breast cancer (i.e. mammogram, every six months for a P.E.T. scan) and that I have no cervix thanks to the prophylactic oophrectomy/complete hysterectomy I had when I was diagnosed with stage 4 progesterone positive breast cancer.

The robot asked me if I wanted more information. No. Why should I? I must admit I was hesitant to press the "no" response....Would that mean that they would throw me into a bin as un-cooperative? or would it flag me for other problems???? Why, after being covered by this same insurance for 4 years, is this popping up now????

So..yes...I'm hesitant...and afraid....The health care/insurance house of cards is shaky....and I'm afraid it is going to come crashing down around my ears.

Battle Ax Plug: A Tale of Aromasin and Zometa

I've been among the missing for a while. My computer had a virus, I've been really busy with the garden and life in general. In addition, I started a regimen of daily Aromasin tablets combined with a monthly IV of Zometa. Aromasin is an aromatase inhibitor like Tamoxifen and attempts to thwart cancer cells from being able to get nutrients from the body and hopefully the cells will die.

Zometa is an alondronate. It prevents bone loss and also seems to be able to kill cancer cells which have metastasized to the bone. Three days after my first treatment, I experienced severe fatigue. While I wasn't sure if it was the quilt retreat which I had attended over the weekend, I did notice that it was in the top five side effect listed on the information sheet. The first day, I slept for 10 hours. The next day I didn't feel much better.

I called my oncologist's office. He was on vacation but I asked when did the fatigue commonly hit, and how long would I expect it to last. According to the fact sheet, it caused a loss of red blood cells which would explain my fatigue.

Much to my chagrin, the nurses responded "It doesn't cause fatigue." Well, hmmm. Why is it that it listed it on the common side effects then? I went on line to see what I could find. Over and over it said that it often caused fatigue which was sometimes severe in the first couple of treatments and that I should let my oncologist know. So...the next day I called back and asked that it be put into my chart that I was experiencing debilitating fatigue. I'm not a person to stay in bed all day and that's all I wanted to do. I had to force myself to get up and about.

Later that day, I got a call back from the doctor's assistant. Again, she said that the oncology nurses said that it didn't cause fatigue and that "I should get up as it was only going to make me feel worse if I lazed around in bed all day." (!!!!!) Well, great, just great. Once again, I have fallen prey to the arrogance of this particular office. This is the same office which insisted that I didn't need 1 1/2" long port needles and begrudgingly special ordered them for me...then were very suprised when the 1 1/2" needs were inserted and "had no extra sticking out..." Wow. I really did need them.....now why would I make a fuss about asking for something I didn't need when I had been getting my port flushed and infused for over 8 years with an 1 1/2" needle? Did I really like having a heavier gauge needle (thicker needle) inserted into my chest?

I'm not happy with this. But this is what I have to work with here. The James Cancer Center's doctors kept me sitting with a drape on on a table 5 hours after my appointment time twice. I'm not going to drive 1 1/2 hours to be treated that way. I'm hoping to get some resolution with my oncologist when I get to talk to him next.

The next bombshell hit just a few days later. I had been given a 14 day supply of Aromasin ("given" is a misnomer as it cost me $164 for the 14 pills) to use until my mail-order supply came in. I waited. I used up all of the 14 pills. I started taking my Arimidex again until it would come in. I finally called my insurance's mail order pharmacy. They were suprised as I was supposed to get a call to verify that I still wanted the pills as they had a high co-pay. I asked how much. $900 for a 3 month supply. I said well, I guess I have to agree. What else can I do? Their answer? Ask the doctor to prescribe a less expensive drug.

Well, yah.... right....Aromasin and Zometa are nearing the end of the arsenal for me. They are drugs of last resort. What ELSE do they want my oncologist to order? I suppose a 22 to the forehead might be a better thing as far as the insurance company is concerned.

Two weeks later and I'm feeling better. I'm a little less tired, but I still get tired in the evenings...something new for me. At least I can get up and do something. I'm a little concerned as one of the side effects of Zometa is the loss of tooth enamel. One lady has complained that she has lost teeth from it. I can say that my gums are more tender. New drugs are always a treat...you just never know.

In the mean time, I am amused by the early 20th century advertising paint job on this building in Tipp City, Ohio. I'm just a battle ax who is going to plug along...and I'll let you know how the next treatment turns out and whether or not the fatigue happens again or not. So far, I haven't found too many people who have had experience with this combination at all. Hopefully, this will help someone down the road.

Deep going, Bodacious tatas and a rant

Today was my rescheduled visit to the oncologists. I'm afraid it is deep going, just like Lemmie found when he went outside on Saturday before we got an additional 13" of snow.

I swear, today my doctor and I simply weren't communicating. While I feel better than I did last year at this time and my pelvis doesn't hurt unless we're getting a big snow storm, I was taken aback when he said he wanted me to have another PET scan before I come to see him at my next appointment in June. That means, 2 pet scans in six months. When I asked him about that, he said "You know, I want to keep an eye on that one area which showed some suspicion the last time, on your acetabulum." Yeah. Right. Needless to say I was startled as I didn't even know what the acetabulum was.

I also asked him about the fact that he wanted me to take Zometa infusions but that I hadn't started. We talked about Zometa, which was a little scary....but yet he didn't set up any treatments for me. I'm not thrilled, as going in for monthly doses, even if it is 20 minutes rather than the 4 hours that it took for the Aredia that I used to take, doesn't leave me feeling too good...especially since they took my port out two years ago and my veins stink after all the chemo I've had. In addition, Zometa has some pretty steep side effects, which I guess aren't common but still.....

When I got home, I ran to the computer to check the acetabulum. Hmmm. Very interesting. When I was in Montana and he told me about the pelvic fracture, he told me it was on the pelvis in the area where my previous cancer and radiation was. According to this, the acetabulum is at the top of the hip socket, and my previous problem was much higher at the illiac crest. I'm also not liking what they had to say about acetabular fractures. Crap. Just when I think I'm doing OK and I'm just going to be putzing along and that this was all as a result of the previous cancer location and treatment, I find that it is actually about 8" or so away.... I'm going to have to call him again and ask some more questions and find out when I need to start taking the Zometa. In the meantime, I'll continue taking calcium, vitamin D and Arimidex. Pooh.


I was also a little irritated today when I got a "call for volunteers" for an Army of Women study involving Yoga and breast cancer survivors. Yee Haw! I thought....I can participate in that one! Nope. Not on several counts. They wanted people who were 2 years out (I'm 13 years out); no recurrences (strike two!) and stages 0 through 3 (oops, STEEEERIKE 3! You're outta here!).

What irritates me is that if you have recurrences, and if you have significant involvement, they don't want to look at you. I suppose part of it is that they figure if you have stage 4, you're a gonner anyway. If you've had a recurrence, then they don't want to look at you either for about the same reason, and if you are out for as long as I have then it would be hard to tell if it was actually a permanent fix from the previous treatment or that yoga (or whatever) is actually working for you. Still, I say POOH! (Or if I was from the 18th century or earlier "FIE on it!).

I suppose most of you have seen the somewhat humorous column by Sandra Fish which appeared on February 6. If not, look at it here. Ms. Fish, who has had a left mastectomy with reconstruction, recently had extra attention paid to her by the FSA. Apparently, the new scanners don't particularly care for her silicone implants. Since then, I've seen some other spots on the internet saying that female suicide bombers are using breast implants which are actually explosives.

I don't know what to think about this one. Certainly it would probably make sense for us to be treated pretty much the same as people who have pins, hip replacements, etc. and have excess metal in them, but I do wonder. I can see myself now whipping my prosthesis out and flipping it on my head or other some such nonsense. I don't call it my sillycone for nothing.

Even so....it does give one pause.... and pretty soon, I can feel like I'm the car treads frozen in the slush....

Stay tuned...I'm going to have a tutorial and converting standard bras to mastectomy bras within the next couple of days. :)

Tomorrow is a Busy Day

Tomorrow is full of appointments. I will have to get up at 4:30 am to take my husband and the neighbors to the airport. Then, at 8:30 I have my yearly mammogram.

I am probably one of the only people in the world who says to the technician to press harder....what ever they need to do to get the clearest shot.

I know a lot of people worry about it. I don't. I look at it as reassurance, that they will catch something if it is there, and if not, then I get another year.

Do I like it? No, not really. Yes, it hurts. I think if men had to have them on a regular basis, we would probably have less expensive, and less painful methods to take a look. So in the meantime, I'll just grin and bear it... Going to court with my daughter for her traffic ticket is probably going to be a whole heck of a lot more painful in the long run. Repeat after me: "This is only temporary. "

Army of Women

I owe everyone here a HUGE apology....time has gotten away from me and I've fallen off the blogging wagon. I'll try to be better.

Not too long ago, I stumbled upon a neat breast cancer spot, the Love/Avon Army of Women.

There's a lot of good information there, even if name is a tad sexist. This is a problem my cousin's husband faces ALL the time---he's a guy who's had breast cancer and has pink shoved down his throat all the time and the assumption that all breast cancer survivors are women, but that's fodder for another blog.

One of the coolest things is that they are taking information for a HUGE online survey and following people (men and women) who have had and who haven't had breast cancer. They hope for it to provide meaningful answers because they hope the sample to be big. The survey is called HOW For more information, check here Kind of a cool concept and I'm all for gathering the largest sample possible.

Another thing they are currently offering is the Army of Women necklace which I think is pretty cool. It's only $5. For more information on this, click here.

So, be of good cheer. This is a new year and I pray it will be a good and healthy one for all!

Finding Yourself

Time after time, I hear breast cancer survivors say that they have lost themselves somewhere in this cancer journey. Indeed, I have felt this several times along this long path.

I don't often hear oncologists, or people writing articles about breast cancer patients mention it. And yet, for many of us, it is a struggle. It seems like most of the care and thought about the disease is with the diagnosis and the treatment.

After treatment has been completed, I don't hear many people talk about what the survivor has been going through mentally. In fact, I think that many (if not most) oncologists aren't quite sure how to deal with us. Sometimes going to a therapist is suggested, but often insurance doesn't cover it or there just isn't the funds to pay for all the co-pays....and it is a rare therapist who can really understand this.

To be sure, it isn't uncommon for anyone who has gone through a life change to feel this way. Indeed, when I had my daughter and left my position at the museum I struggled. No longer did I have a professional standing, I was just a mom. I have heard others struggle with the same thing.

But, for the cancer survivor, there is even a harder struggle. We have come out of a life threatening situation. Many of us have had long, hard struggles with chemo-therapy. We are no longer actively fighting. Our bodies may have been changed. Our futures are no longer as certain as they had been (or rather as we had perceived them). What do we want? How do we go about achieving it? What physical limitations do we now have which we didn't have previously?

I understand, and this may be an imperfect understanding, that among some Jewish cultures, when an individual has a life threatening, or near death experience, they then change their name. Perhaps this is a good idea. It gives us a new beginning, one not necessarily burdened with the past. It allows us to remake ourselves.

I don't know what the answer is for this. It is something I struggle with. I do wish, however, that more care would be taken to look at the long-term psychological effects and that tools would be given us to help us cope with this phenomena.