Sometimes doing the right thing leaves you exposed

I've written before about the Army of Women posting a research study for young women who were diagnosed with breast cancer. You had to have been under 40 and pre-menopausal. This was one of the first studies that I have ever qualified for, and something I really wanted to participate in.

I was especially interested as there had been no breast cancer (or cancer of any type) in my family up until me, and then my sister who is 7 years my senior was diagnosed with it about 5 years after I was. I want new information to come out and hopefully treatments/preventative measures so that my two nieces and my own daughter don't have to go through what I have.

I also thought it would be good as my mother and father are both living and both are in their 80s. The combination of my sister and my parents just might give some insight into why this happened.

I filled out the permission forms and the history and had blood drawn and sent off to Washington University in St. Louis. It was not without some trepidation that I filled those papers out. You see, there isn't anything to protect me or my daughter from having insurance companies in the future deny her treatment based on genetic testing information which might show her to have some sort of gene abnormality which would make her at risk for getting this disease.

I find this a travesty. I didn't like it, and I know I am putting her future at risk, but I feel that I'm putting her future at risk if I don't step up to the plate and participate. We should be protected. No one should have this being held over their head, particularly if one is being penalized for doing something for the greater good.

In addition, even with a positive genetic factor, it doesn't mean that a person who has a gene abnormality which is connected with cancer has a 100% chance of developing the disease. For some unknown reason, sometimes these "triggers" are not tripped. But I certainly want to put a bullet in this disease. I guess I'm going to have to write my congressmen, but I feel like it won't go any where.

Not Every Cloud Brings Rain

Imagine that there is a watermark on this picture....for some reason I'm having trouble with Photoshop getting the watermark to stay. grrr.

This week has been a little tough. Not only have I been having pain in my hip, but yesterday I started to have some discomfort in my ribs as well. Toss in the fact that I also discovered that I have Lyme disease (and am now on antibiotics but feel tired and often dizzy), its been a little rough.

Usually, I keep my head about things, but the rib thing really made me a little nervous. Since I couldn't remember how much calcium and vitamin D I'm supposed to be taking (I finished the bottle and threw it out and then talked to my sister who is taking LOTS of both) I decided it was time to call my oncologist and ask him about the dosage and also to give him the heads up that I was feeling something in my ribs....which is one of the locations of the new metastases. I figured that would give him some time to think about what to do next if the Faslodex wasn't working.

He called me back within a couple of hours. and told me that for some reason, even if Faslodex is working it doesn't usually show up right away. He said that he new of cases where they had discontinued the drug, and then two months later they saw improvement. He also said that he has had very good results with his patients on this drug and didn't have any bad cases to report, but that he had several patients who had been on it for 6 years and were still doing well.

Ok...so why don't we know about these things? I think part of it may be that quite often what reporters and the media are looking for are cures. What Faslodex does isn't curing cancer, but making it be a chronic illness. Just another case of keeping us patched together until we can find something better.

I'll take it. And I'm very grateful I have a doctor who is willing to listen to me and to give me encouragement even when things look rather dismal. I'm not usually one to jump to conclusions. I'm also not one to always look totally on the dark side. However, since I have only known this doctor for 4 years, I never know how his office perceives me.

The Tattooed Lady and other laughs

The road for the cancer survivor is often long and bumpy. However, it isn't without giggles...at least if you look for them. Today, I actually experienced a new giggle.

Every year, I try to go and get a full body check for cancer by a dermatologist. I decided that I would switch to the local guy my daughter has been seeing.

When I received radiation therapy to my breast when I had my first bout with breast cancer, I was tattooed, 4 (or 6, I can't remember) little black dots were put on my breast in order to mark the coordinates for the radiation beam. (I asked them for a mermaid, but they said no, that was a little over the top. Darn.). Ordinarily I don't think too much about them. In fact, when I had my mastectomy, some of them were removed with the breast, but I still have two small dots.

When I was at the dermatologists for my first exam with him today, he looked at me and said "What's with the tattoos?" Uhhh...well, you see, I was going to get a mermaid, but I chickened out after a couple of dots...." Yes, I really did say that...but I followed with the real explanation.

I told my daughter when I got home about the exchange. Her eyes grew very wide.."You have a tattoo???" she asked incredulously.... I told her yes, but they were top secret dots. For a moment, she almost thought she had a really cool mom, but then I had to go and spoil it for her and prove once again that I'm not cool, just an aging nerd.

Preparing for Surgery and Axillary Dissections

NiddyNoddy's comment on my last post made me think back to the first time I had breast cancer surgery in 1994. While I had listened carefully to the surgeon's information, after surgery I was confronted with a lot of new experiences and situations with which I could have been far better prepared.

As I mentioned in my comment to her, one of the biggest embarrassments I had was that I didn't have any button down shirts to wear after the surgery. I am a turtle neck with sweater in the winter and polo shirt in the summer sort of person. After having an axillary dissection (where they remove lymph nodes from under your arm), you are fitted with a drain to carry away the fluid under your arm. This extra apparatus doesn't fit too well under a turtle neck....but the biggest issue is that you can't raise your arm. A button down shirt is imperative. I actually had to borrow some from friends and relations.

The drain is important, and must be kept flowing well. Be very clear on how to flush it and make sure that nothing plugs it up. I had a slight plug the first time around.

As soon as the doctor gives you the go-ahead, start doing the exercises. Make sure you ask about when and what to do. They are simple (wall climbing with your fingers being one) , but the tendency is to treat the affected arm like a broken wing. Failure to move that arm may cause permanent restriction in the movement of the arm. I firmly believe that the reason I don't have any issue is that I HAD to get moving...caring for a 15 month old baby MADE me move and take care of myself.

Be aware that for the recuperation period you will not be able to lift ANYTHING....even weighing as little as 2 pounds. Make arrangements or think about how this is going to impact you.

More importantly, if you have had lymph nodes removed, then your lymphatic system is disrupted. Fluids may build up in your arm and you are more susceptable to infection. Silly things like insect bites or pulls can bring on lymphedema, a swelling of the arm which can be painful as well as dangerous. My sister developed it after the dog pulled hard on the leash while walking. I am very lax in watching what I do, but it is something I should be aware of.

For the same reason, you can't have blood drawn from the affected arm, you shouldn't have blood pressure taken on that arm and you should avoid all types of "sticks" (i.e. needles of any sorts) in that arm. Only under duress should that be done. Medical bracelets with this information should be worn to protect yourself... for the rest of your life.

I strongly suggest that you take advantage of the programs provided to breast cancer survivors by the American Cancer Society. They can send a volunteer out to talk to you about what to expect, what your concerns are, etc. The volunteers are all trained and all have gone through the same thing that you are looking at now. The major program is "Reach to Recovery." In addition, they often sponsor breast cancer support groups. While many people react to the support groups as not being necessarily because "I know x,y, and z who have gone through it, " the advantage in going to a group such as this is that you can hear all of them discussing things at once. In addition, the larger the number of individuals will give you a broader experience. Believe me, while there are times of tears at such groups, there are plenty of laughs as well. My Meriden/Wallingford, CT group was called "The Bosom Buddies" and let me tell you, they were a great bunch of ladies who gave me great advice.

Do not panic if months after your surgery you have pains, often searing, in the area. These are generally nerves regenerating or just doing funky things. While it is worthwhile to mention this to your doctor, it doesn't necessarily mean that you are having a problem. Even 13 years after my last surgery, I sometimes have the searing pain. It comes, then goes quickly...but leaving me a little breathless. The nerves and scar tissue are really odd that way.

Living with cancer is different. Sometimes it seems like a long, steep upward climb...but the sight at the end of the staircase is wonderful.

Bottoms up! Faslodex

The new regimen of treatment for me is Faslodex injections once a month and Zometa IVs once every three months. Last month I had my "loading dose" of Faslodex (fulvestrant).

Faslodex is an injection which is used to treat cancer in hormone receptor positive women who have not responded to (or have had their case worsen) with other treatments, such as tamoxifen, or in my case, Arimidex. Faslodex is an estrogen receptor antagonist which prevents the cancer from being able to use the body's hormones to grow. It is only used in menopausal women and is NOT chemotherapy.

It is administered as an injection in the "buttocks" as the material so nicely describes it. There are very few side effects, other than packing a substantial whallop to your wallet. Well...relatively minor ones. The most common is an "injection site reaction."

Last month, I received a "loading dose" (basically twice the dose I will normally have), one shot in each "cheek" so to speak. The needles were a pleasure after getting used to the chemotherapy needles I have been using for so long. What did amaze me is the size and variation in color of the bruise which I had by the time I went to bed. Imagine yellows, to magenta, to dark "blue"....all in one fairly large spot. The spot was also hard and warm to the touch for about 10 days. The second week, I could still feel the lump but by then, the swelling had gone down and the area well...itched. Not exactly a ladylike spot to relieve the sensation.

Today, I got my second dose. When I went in, the nurse had two syringes ready....TWO? I asked about this because it was my second dose, and I thought I was done with the loading doses. She had wondered the same thing and had asked my oncologist before she came into the room with me. So, she decided it was worth asking again as I had understood that I was only getting one shot today.

She came back saying that recent information indicated that the "loading dose" should be administered for a longer period to have the greatest amount of efficacy. This news made me feel really great. Why? Well, it indicated that my doc keeps up on the latest information. Cancer treatment is changing....and rapidly. I'm grateful that I have someone who keeps up on what might be best for me.

I said something to the nurse about hoping this will work...her comment was that lots of people have lived a long time with good results on this drug. I'm just hoping I'm one of them.

Zometa part II (zoledronic acid)

I've now had my second dose of Zometa. I'm happy to report that the drug seems to work just like they said. While I had extreme fatigue with the first dose, I didn't have the same symptoms this time. According to the manufacturer's information, it usually only causes heavy fatigue in the first dose.

My doctor has me on it once every three months. I queried him on this as my "warrior" individual says I should have it monthly to fight it more! It also seemed like most of the information I found on it was that it was given monthly. In fact, I received my first dose when my doctor was on vacation. The nurses automatically put me done for a monthly shot, but I told them I was fairly sure that he wanted me to have it only once every three months.

When I was able to discuss this with him, he told me that he doesn't usually prescribe this for monthly unless I have extreme pain or in cases of multiple myeloma. He said that current studies indicate that having it more frequently doesn't ensure a more favorable result, and it does carry greater risk of negative side effects such as kidney failure and Osteonecrosis of the jaw. Frankly, I'd rather not have these side effects.

It's difficult to explain what Zometa is to my family and friends. Since it is given in 15 minute IV drips, everyone assumes that it is chemotherapy. It isn't. It is a bisphosphonate, and is the same compound as Reclast, for those who may be familiar with that from all the direct advertising.

They don't know quite how it works, but it does work well for some patients. I just hope I'm one of them.

Sometimes you just want to scream

Sometimes people want to help. Sometimes you just want to pop them in the nose. A week and a half ago, I realized that shoveling was getting difficult for me. I worked in the garden moving plants and shrubs several days in a row and my pelvis (at the joint between the femur and the pelvis) was aching severely.

I realized that this is the area which has been recently diagnosed with cancer more severe than in other places....and yet I also know that this is the same area which was fractured in the fall. It is my right leg. Surprisingly, because I'm left handed, this is the foot I put on the shovel, the one which carries the power.

I thought maybe, if I just used my left leg instead....I'm pretty ambidextrous in most things...only I felt like I was a clown wearing big shoes when I tried. I sulked. I mentioned to my neighbors that this was getting hard. I'm also getting a little concerned that I won't be able to keep this up.

I also know that my gardens are too full of plants as I love plants. I need to make divisions, send some things on to someone else that I don't particularly like after all....or whatever. So, I emailed my quilty friends that I needed to simplify my gardens as I won't be able to work on them like I have...at least for a while. . .

A couple of days later, one of my neighbors came running over. "Lisa! Lisa! I've solved your problem!!!" "Problem?" I thought.... "I talked to the woman who does my gardening for me. She's a member of the Hosta Society!!!! They'll come and dig up all your hostas, haul them away and even PAY you for them."

My jaw dropped open.

If you take a look at my other blog, you'll see how important my gardens are to me. Most of my hostas were brought down from Connecticut where I had over 100 different varieties. I had to keep on saying to myself "She means well." I had to make sure I didn't say "BUT I'M NOT DEAD YET! I'M STILL ENJOYING THEM!!!!" I was really dumbfounded that anyone would make such a suggestion to me with as much enthusiasm as this particular neighbor.

It will be a cold day in hell before I have the Hosta Society come in...at least while I'm still alive. If anyone digs up all my gardens and takes them away....it will be at a garden party at a time of my choosing, when the end seems near. I'll call in all my friends and ask them to bring friends who garden. They may come...have good food and drink, then take home what they want, leaving a more reasonable garden for Carlos to enjoy...especially since he doesn't garden or understand.

On the other hand...I put out to the local quilt guild and some of my other quilty friends that I have plants to share and plants to give away as I can't do this like this any more. Instead of coming to destroy my gardens, I've had three days of people coming to help me take out things which I point them to, weed and move things around to better locations. They've taken home things that I have pressed on them, not that they hovered over like vultures. What a more caring way to deal with this. I am enjoying working with everyone and I think they are getting something too, in addition to plants. Much to my amazement, the guild has offered to come and help me on a weekly schedule throughout the summer. Hopefully, I'll get the mulch down and everything and we won't have such a mess as I do now...but what a sweet and thoughtful thing to do.

My hip doesn't hurt so much, I've found, if I don't press my luck and go for several days in a row.

On another odd note.... On Sunday, May 30, I fell at Bruckner Nature Center while taking photographs. I stepped on a steep path and there were little twigs which caused my foot to roll...and fell on the side which I was holding the camera. I turn my wrist to protect the camera and heard a snap as I hit it. I have an occult fracture of the radius...and after three days in a splint, the orthopedist took it off and told me to use it, but if it hurt, don't do that particular motion. This would help maintain motion in this joint.

Now the thing I find interesting is this: In 1997, I stepped off a curb and rolled my foot, causing a torsion fracture. Two weeks later, I was diagnosed with a recurrence of breast cancer which I later found out to be stage IV. What a strange co-incidence that two weeks ago I discovered I had some more lesions (shoulder, ribs, sternum, pelvis) and then I broke another bone.

Anyway....