T-4

As of today, I have been taking Tamoxifen for exactly one year. One down and 4 to go. I don't know why 5 is the magic number, but it is what my doctor has recommended. I do know that a higher percentage of recurences happen within the first 18-24 months of initial diagnosis, but after that, the risk kind of levels off.

For the most part, I don't have significant side effects from Tamoxifen aside from hot flashes and night sweats from being in chemo-induced menopause. I do sometimes have joint pain, especially in my ankles. But that's it really. Oh and I can't eat grapefruit as it interacts with the drug. A minor nuisance to give up grapefruit and grapefruit juice for 5 years.

It is hard to imagine that a tiny little white pill is responsible for such a big role in my body. Its role is to keep the estrogen from attaching onto any cell that might consider becoming a cancer cell. In theory, because I had chemo and radiation, I should have no cancer cells in my body so there should be nothing for any estrogen to attach onto.

I am glad to have yet another milestone under my belt.

Tamoxifen

Last night I had the chance to go see the Lion King at the Paramount Theatre in Seattle. I have seen it before but never with my children so I was really excited to go. The show didn't disappoint at all and was thrilling from beginning to end. My sister went with us as well and spent the entire show being cold as it was a bit chilly in the theatre. I told her that a nice hot flash would take care of that for her. Certainly it took care of it for me. I had a coat on when I went into the theatre and about time the second act started, I started sweating and had to remove my jacket. 10 minutes later, I am cold. Aaargh!

I have a bit of a queasy stomach occasionally when taking medication so I have learned to take everything at night when my stomach is full. Every night I take out my collection of pills. I really don't like taking any type of medication so mostly my pile of pills consists of vitamins and supplements, but then there is that tiny little white Tamoxifen pill.

Tamoxifen is what is currently responsible for my hot flashes. It is a hormone blocker and blocks the estrogen in my body. Each night when I take it I have some different feeling about it. Some nights I hate it. It is a constant reminder that cancer is going to be part of my life for a long time. Some nights I take it and am thankful that I am done with treatment and ONLY have to take one tiny white pill. Some nights I am in awe that a tiny white pill can do so much to hold cancer at bay and improve the survivability rates of so many women.

I know that it is saving my life and I'm grateful that if I had to have cancer, I had it in a time when this particular drug is available to women with my diagnosis. I also know that the side effects could be much worse and that I am lucky to have minimal side effects. I know all of this, but I still hate being dependent on medications and I'm not all that fond of hot flashes either. However, like I told my sister last night, if you are female, then at some point you will go through menopause. I just happen to be going through it earlier than I might have otherwise. So when all of my friends are in their 50's and having hot flashes, I will just smile and say "Yes, I remember".

Menopause=No sleep!

One of the things that my oncologist was most excited about was that going through chemo put me into menopause. Since I am estrogen positive, this is a good thing for me. Menopause equals less estrogen production which equals less potential for a recurrence.

So far, the only real side effects to menopause are hot flashes and night sweats. I started having these after my second round of chemo. They were decreasing and I was mostly having these side effects at night, but add Tamoxifen to the mix and I am back at ground zero with hot flashes during the day and sweating at night.

One would think that since it is the middle of winter, I wouldn't mind having hot flashes just to keep warm, but it is actually worse. I still get cold from the weather and really want to bundle up in a cozy sweater or a nice soft blanket. So I do this, get all comfortable and cozy and then WHAM another hot flash.

This might be OK if I was one of those people that got the cute little dots of sweat on their nose and that is it, but no, I am not a pretty sweat-er. I sweat everywhere.

I used to be one of those people who hit the pillow at night and never woke up until the alarm went off in the morning. Now, I am tossing and turning all night long, throwing blankets off when I get hot and putting them back on when I get cold.

I should be glad that I am in chemo-induced menopause and I am I guess. Menopause equals less estrogen, but unfortunately, menopause also equals no sleep. I miss sleep.

Math Lesson

Back in December I was supposed to have an appointment with the hereditary cancer specialist at Swedish. Bring on some ice and snow and my appointment went by the wayside. I was able to reschedule the appointment for January 13th. Larry went with me and we spent an hour or so going through our entire individual family histories. It's hard to keep track of everyone's illnesses and ages!

After an extensive discussion, we decided that I would be tested for the BRCA1 and BRCA2 genes. It is actually a mutation of the gene that is being tested for. Despite what most people think about risk, having a mutation of the BRCA1 or BRCA2 gene accounts for less than 10% of breast cancers.

Yesterday I received a call from Dr. Resta-the walking encyclopedia of hereditary cancers. My results are in and I do NOT have the BRCA1 or BRCA2 gene mutation known to drastically increase the risk of breast and/or ovarian cancer.

I am happy to know that I am not passing on a genetic predisposition to breast cancer to my daughters. People who carry the mutation have up to an 80% risk of developing breast and/or ovarian cancer.

So what does this mean for me and my children? The average woman has roughly a 12% chance of developing cancer in her lifetime. As someone who has been diagnosed with breast cancer already, my risk is now roughly double that-about 26% of a recurrence or a new diagnosis. Chemo, radiation and tamoxifen have have reduced that number even further to about 16%.

Because their mother has been diagnosed, my children now have about a 20% risk of developing breast cancer. However, since they have not yet reached puberty, this is a very rough number.

My sister, having come from the same gene pool and growing up in the same environment also has an increased risk. Her risk is now about 20% as well. Now we all have our numbers to do what we will with. Numbers are only numbers and even people with an 80% chance of developing breast cancer have a 20% chance of NOT developing it.

I have an 84% chance of NOT developing cancer again and I accept that number. However, I still am looking forward to the day that I can say I have a 0% chance of being diagnosed again and that my children and any other women on the planet have a 0% chance of developing it as well. Zero is my new favorite number.

Zometa

I had a follow-up appointment with my oncologist today. Among other things we talked about, I asked her about prescribing Zometa for me since I couldn't get into the clinical trial that I wanted to. This is why I love her. She immediately said yes and prescribed semi-annual infusions of Zometa. I will receive my first one on January 13th.

Zometa is a drug primarily used for osteoporosis. However, it has been found to drastically reduce the risk of recurrence to the bone in people with my exact diagnosis--diagnosed young, early stage, pre-menopausal, estrogen positive and taking Tamoxifen. There have been several large studies and it appears that adding Zometa to the Tamoxifen reduced the chances of recurrence by about 30-35 percent. It is not yet the standard of care to prescribe it, but I believe it will be eventually. I am thankful to have a doctor that is willing to work with me. She was voted one of Seattle Magazine's top 3 oncologists and this is why. She lets the patient be part of the conversation.

I'll take 35%. I'll take every 1 or 2 or 10% that I can.

Trials and Justice

Yesterday I went in to Swedish Hospital to talk to the research coordinator for the clinical trial that I asked to be in. This particular trial fits my situation perfectly. It is for early stage breast cancer patients who have completed chemo and radiation and are taking tamoxifen. I specifically asked to be in this trial because it adds bisphosphonates to the tamoxifen regime. Bisphosphonates are drugs generally used for bone loss, such as osteoporosis. They have been found to have a significant impact on distant recurrences of breast cancer to the bones. This trial measures the use of tamoxifen with bisphosphonates administered in different ways, via IV or taken in pill form.

I was really excited to be part of it since the benefits are significant. Unfortunately I was told that I was too far out from chemotherapy. The people who run the study set it up as part of the criteria that the participants were no more than 8 weeks out from chemo. I am 12 weeks out. I never thought I would be disappointed to be further away from chemo. I am extremely disappointed that I can't be part of it. I am going to do whatever I can to get my doctor to prescribe Zometa (the bisphosphonate) for me so that I can get the benefits associated with the study.

Since I am 12 weeks out from chemo, my body is recovering from being assaulted. I have my energy back and I feel really good. I feel healthy and whole. The injustice of it all though is that now that I am feeling healthy, I still look sick. Though my hair is growing and people continue to remind me that it is, I still look like "Cancer Girl" when I look in the mirror. My mutinous eyelashes and eyebrows decided to take a hike at about 8 weeks after my last chemo and though they are coming back, it just isn't fast enough. What kind of justice is it when the hair on my chin, under my arms and on my legs comes back with a vengeance but the hair on my head is growing back at a snails pace? Drat! I want to look as healthy on the outside as I feel on the inside. Every morning I look in the mirror and though I see someone who is healthy and happy and I am thankful for that, there is only one word that comes to mind when looking at my head....GROW!!

The Next Chapter

If Chapter 1 was surgery, Chapter 2 was chemotherapy, Chapter 3 radiation, then Tamoxifen must be Chapter 4. Today I will start taking Tamoxifen. I will take it for a minimum of 5 years. Tamoxifen is a hormone blocker used specifically for people who are hormone receptor positive. I am hormone receptor positive for both Estrogen and Progesterone. Historically breast cancers were all treated the same way. Now with the advances that have been made in breast cancer research, doctors understand that not all cancers are the same. Because I'm female, I produce estrogen. Tamoxifen blocks the estrogen from attaching onto cancer cells which causes them to grow. Simple. Like anything else there are benefits and potential side effects. Most likely I will experience hot flashes. Who wouldn't want to have more of those? More serious is an increased risk for uterine cancer. I am counting on the fact that the benefits, which are significant in reducing the risk of recurrence, will outweigh the risks.

Like everyone else at WaMu, I was given notice today on my job status. As expected, I will be laid off, but will be working through the end of March. This is the best possible solution for me. I get the opportunity to be part of the change from WaMu to JP Morgan Chase doing work that I enjoy. The risk is that I may miss out on an opportunity outside of WaMu that may not be available in April that is available now. I hope in this case as well, that the benefits will outweigh the risks. I am ready to take on the next chapter.