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.

New Mammogram Recommendations

I have been struggling with how I am going to approach this. When I heard the new government recommendations for mammograms, I was infuriated. However, as someone who has had some training in science, and more in maintaining objectivity in what I read, I needed to know more.

Part of the problem is that this recommendation is sheer statistics and looking at things from a financial aspect. We are not statistics. We are individuals. Part of me says that if one person is saved the horror that I have gone through, then it is worth it. Finding cancer when it is small rather than the 3 cm tumor I had when I started this dance in 1994 would probably have led to a better outcome for me and less invasive or drastic treatments. However, I was too young to have a mammogram (at age 34). I do know, however, several women who have been diagnosed in their 40s solely by finding it on a mammogram. So, what price is life? Who is going to determine which of us will find it at a later date or when it requires far more expensive treatments?

The comment that keeps on coming up is that 10% of mammograms produce false positives. Is it 10% of mammograms, or is it 10% of the mammograms which find things produce a false positive (which of course would be a much smaller number). While I suppose that if you had a false positive, it would be a pain to know that you went through the biopsies only to find it wasn't cancer after all (and I only know two people that this happened to, both women in whose families had lots of deaths and diagnosis of breast cancer), but I would think it would be a relief.

I wanted to find out what other countries did. How do they approach screening for breast cancer? I wasn't able to find it easily....heck, when I googled it under a variety of methods I couldn't find it at all.

I was also appalled at the recent recommendation that women not do self-breast exams. If I had done them and BELIEVED in what I found, then I probably wouldn't have spent 12 years of my life dealing with stage IV breast cancer. I probably would have found the cancer when it was smaller (as I did find a thickening and asked my husband if he thought it was anything --dumb dumb move, but I thought I was a hypochondriac...why did I have to worry about breast cancer? It wasn't in my family). Women who do self breast exams regularly know where their lumps are. If they feel a problem then they can check it out.

The response to that recently has been "well, usually women find it by accident (well, yah, if we don't do breast self exams, and I think the majority of women aren't too religious in doing them), and it would have to be fairly big if the tumor is deep." I'll grant you that...but I can honestly say that the tumor was MUCH larger when I waited for six months. Besides, what harm does it do? Again, if one woman finds something suspicious and checks it out and finds that it is cancer, then it works. If another woman looks for 100 times and finds nothing, then lucky her.

I think that most of us are afraid that by issuing this recommendation that soon insurance companies are going to use it as a mandate to not cover mammograms in our 40s. While today I saw that "insurance companies assure people that they are not going to change their coverage" I feel that this is bolderdash and it will only be a matter of time after the furor dies down that this is changed. After all, my own insurance company stopped covering wigs for women undergoing chemo as it is "cosmetic and not necessary" (fine for some women, not so fine for others....).

In addition, for doctors (and the Surgeon General) to just say "keep on doing what you're doing," and to "make the decision on your own" or "decide what is right for you" maddening. I know that it is better than it was for us in that we can participate in chosing our treatment, however sometimes getting advice or even the information we need to make the decision is like pulling teeth. Sometimes I feel like we are having to be our own doctors....and after all, how can we who do not have medical degrees and have the background make such decisions? I don't want a doctor to be imperialistic, but I do want a doctor who gives sound information, ON BOTH SIDES of the issue and points us to the studies and explains them so we can make a decision.

The other aspect of this whole thing, the recommendations for mammograms and the advice to stop doing self-breast exams, is that it trivializes breast cancer. I know, heart disease is still the number one killer of both men and women in the United States and we should pay particular attention to that, but I think that both heart and breast health is important.

I am particularly incensed at this "Breast cancer campaigns have helped raise awareness about breast cancer, as well as money for research. But all those pink ribbons have given women an inflated fear of the disease – and unrealistic expectations about the benefits of mammograms, says Lisa Schwartz, a doctor at the Veterans Affairs Outcomes Group in White River Junction, Vt." (the whole article may be found here). I wished to the ends of the earth that I had known that I was at risk for breast cancer just because I am a woman back in 1994 when I was first diagnosed. I can assure you, Lisa Schwartz, that we have REASON to fear breast cancer. I have spent most of my adult life fighting to stay alive just because of it. SHAME ON YOU! I want to know why more than 5 women from my graduating class have been diagnosed with breast cancer before the age of 50 (the graduating class of men and women from my high school was 96), three of us before we were 40 and one of us is now dead. If these aren't statistics to make you fear the disease, I don't know what is.

In addition, I'd really like to have my breast back. I would really like to have healthy bones which are not weakened by a six month course of treatment of CAF and a 9 month course of treatment of Taxol and having my ovaries removed. I'd really like to have a daughter who would remember what we did fun together, not remembering what I couldn't do because I was either in treatment or recovering or dealing with the side effects of the treatment to my pelvis.

I believe that early detection saves lives. I just can't believe that the "powers that be" are now suggesting that we not use the tools for early detection.

Survivor Guilt

Sometimes I suffer from what I think might be termed (to some degree) as survivor guilt. Here's what is going on. I'm sort of addicted to Bejeweled on Facebook. My daughter has even snarled at me to get off it and "there are things to help you with that mom".

I find it sort of exhilarating. I want to see how fast I can do it and how I can drive up the numbers. Without a doubt, I've spent hours on this stupid game....and I have other things I could and should be doing.

Here's where the guilt kicks in: this is a useless game and I should be putting my time to better use. I have been given more hours when many of the people I was in treatment with have died. Why should I squander the hours I have and something as mindless and silly as an on-line game? How do I know that I won't be injured, killed, or diagnosed with a recurrence tomorrow and would want back all the time I have spent making three and four gem matches?

Part of me feels very guilty. Another part of me wonders if it really matters... The better part of me wants to conquer this weakness and instill more discipline. I wonder which of the parts will win.