Cancer never goes away

Back in January a test showed a cyst within my right ovary. The cyst was almost the same size as my ovary. Not always a reliable test, my CA125 test came back normal. Normal...what an interesting word. What is normal now? The term "The New Normal" is always thrown around. I guess I'm finally starting to understand that term.

Of course, the first thing that popped into my mind was that it was ovarian cancer. Why not? I am BRCA 1 possible variant. BRCA 1 people usually have a 40 to 60% chance of getting ovarian cancer.

The waiting game. Cysts are fairly common. It only become scary if it grows too large or if it is malignant. They tend to come and go with a woman's cycle. I had my follow up test this week. It appears that it has gotten smaller...in some respect. What does this leave me? I'm uncertain. I'm guessing more waiting.

Cancer never really goes away. My hair is growing back. I can pull up the sides and I no longer have to flat iron my hair unless I choose to do so. My weight is become more manageable. With a great deal of hard work at the gym and watchful eating, I have lost about 12 of the 20 pounds I put on from the alteration of my body due to chemotherapy and Tamoxifen. My sense of urgency to give up my coffee cold turkey is slipping. I've allowed myself more and more coffee, especially decaf. All this and my cancer diagnoses back in November of 2005 is very much a part of my life.

To this day, I am still waiting for confirmation on my bilateral mastectomy. Hopefully everything will work out and my body will look somewhat "normal again." Either way, there will be physical scars.

Of course, my emotional scars are still around. I read a fellow cancer survivor's blog today. She's stage IV and she's younger than I am. They gave her one to two years to live. No, life isn't fair. She's one of the sweetest and upbeat person that I have ever met. I guess I sometimes forget how bad her prognosis really is because of her warrior spirit.

My mood matches our horrid cold front today but it wasn't until I read her blog that I cried for her and all the cancer survivors out there. I typically write when I'm sad. I'm not always sad; I promise. I guess I need to keep working that that "new normal." Maybe it's time to see a therapist. Maybe I just need a vacation.

My Variant Part II

My BRCA variant of uncertain significance may be more significant than we thought. My sister was tested and she does not have that variant. I am extremly happy for her and feel better about the decisions I plan to make. There is a large possibility that my variant is a cancer mutation. My mom's side of the family has many question marks but there is a greater chance that they may carry that variant. The next step is to get my mom tested. This information may be helpful to my family, but it may also help future generations too.

Our bodies are extremly facinating and we are on the brink of some amazing medical breakthroughs. Knowledge is power. Know your family history. Dig. Ask Questions. Read. Learn. It will only empower you.

My Nephews

Ryan and Ben

My time in NM over the holiday break was amazing. Ryan is now five and is in kinder. Ben is a year old and quite mobile.

Upon my landing in NM, I was able to have lunch with Ryan. He wanted a Happy Meal and I used to tell myself as a teacher that I would never do that to my own children or nephews. I arrived in hand with a Happy Meal even though it had apple juice instead of soda and apple slices instead of fries. It is easy to try to please the people you love most.

I'm probably very biased but I think Ryan is an intelligent student. He's able to write out his first and last name. He understood us as we spelled out T-O-Y and shouted out, "Toy!" He would count and recount all this presents under the tree and make piles for his mom and dad because he was able to read.

He's a typical little boy. We chased after him one afternoon while he biked around the block. He often played "smack down" with his aunts. He loved waking us up early in the morning. Just like his dad, he was always trying to eat more sweets.

Little Ben is not so little anymore. He was about a month premature but you wouldn't be able to tell anymore. He's very active and curious. He is super fast on the stairs but will wait patiently for someone to walk behind him. He knows how to say his "Daddy" and even "Coco." He's still working on saying Aunt but he is getting close. He's a happy baby except when he first wakes up. My mom said he takes after me. I am a grumpy sleeper and when I first wake up.

I get to see my nephews about every six months and it never ceases to amaze me how big and mature they get each and every time. When I get down and pessimistic, I think of them and what wonderful little boys they have become. Thinking of them makes me more proactive concerning my health so I can see them become young men.

The Start of My New Year

I must have taken a "break" in 2007 concerning my health. I had my MRI last week, met with my oncologist this past Monday, had more blood work done on Tuesday, had a consult with a new plastic surgeon today and will be seeing a breast specialist tomorrow. If I'm lucky, I won't have any appointments on Friday. Phew! My MRI came back negative. Yea!

My visit with my oncologist was very helpful. I am much more knowledgeable now about cancer treatments and cancer lingo. I asked her to run a few test for me, some of them new. As long as my insurance covers them, I'm good to go. I've been on Tamoxifen for a year and a half now. There's a test out to see if I am metabolizing it correctly. This test is fairly new and may not be accurate but I'm willing to give it a try. Five years on a drug is a long time if I am not gaining anything from it but weight and blurry vision! I am also having the CA125 test to see if there's any risk of ovarian cancer since I'm a possible BRCA 1 positive. Back to the Tamoxifen, it can increase your edrimetrious lining. I am getting an ultrasound to track the changes. We also talked in great detail about getting a bilateral and/or reconstruction. A bilateral means NO BREAST feeding. The good news is that I SHOULD be able to have a biological child. She also mentioned the DIEP Flap surgery where they take the fat from your abdominal and attach it to make your breast. It's different from the TRAM Flap because no muscles are cut.
http://www.microsurgeon.org/diep_flap.htm This website gives a detailed description of the procedure.

My visit with the plastic surgeon, possibly one of the best in town, told me he does not perform this procedure. He highly recommends using my own chest muscles and a then an emblem skin to hold in an expander. The whole process will take about 9 months. I'll be hospitalized for one to two nights. I probably will be pretty home bound, no driving for about two weeks. I should feel almost normal by one month. The joy of having to do this all over again. Sigh.

I spoke earlier today to a fellow survivor that also lost her reconstructed breast to an infection. We know of only each other. I know that there are probably hundreds if not thousands of people out there that lost their reconstructed breast but we know only women that have had successful procedures. On the flip side, maybe there is hope for us!

I will be discussing with the breast specialist tomorrow about a possible bilateral. No decisions will be made soon and I still need to check with my good ole insurance to see what they will cover.

So...more to come.

Happy New Year!

As any new year approaches, I have my long list of new "resolutions." Instead of calling them resolutions, I'm calling them an improved way of living. I will simply dust myself off and get back on my bike if I fall off.

1. I will work out at least three times a week.
2. I will try to eat 70% raw (or higher) and 30% (or lower) cooked food. More on this later.
3. I will continue to try to organize my house, desk at work and car. An uncluttered life is a less stressful life.
4. I will call home and speak to my nephews at least twice a month because they are growing so incredibly fast!
5. I will take time to play, walk or jog Sammy on a daily basis because he's just an amazing dog!
6. I will focus on spending quality verses quantity time with my friends.
7. I will prioritize a date night with RJ at least once a week.
8. I will try to live as healthy as I can and try not to have cancer define my life.
9. I will continue to research alternative living and keep an open mind.
10. I will try to go even greener!

Happy New Year and best wishes for a happy and healthy 2008!

The Smile Never Fades by Bill Bastas

The Smile Never Fades is a book that was put together by Bill Bastas. Bill lost his wife, Michelle, of twenty-two years and vowed to honor those that have been touched by this horrible disease. His book is filled with compelling essays written by survivors and photos taken by him. The book is $35 and the proceeds will go towards cancer research. For more information or to purchase this book click here: http://www.thesmileneverfades.com/thesmileneverfades.html

News 8 did a piece on him and his wife. I was very moved by it and remember e-mailing him that evening to let him know that. I had an e-mail from him the next morning. I checked the time that he replied to me and it was 1:30 AM. He told me that he appreciated my e-mail and that he would never forget me.

His book release party was at the Judge's Mansion on November 28, 2007. He did not recognize me with my hair. When I told him who I was he immediately gave me a huge hug. He was able to recall our conversation from August of 2006 when I first went in to get my picture taken by him! I still had my bandanna on and most of my eyebrows were still gone at that time. It amazed me how he remembered our conversation because I know that he has spoken and photographed many survivors since then. He wrote in my book that he would never forget me and signed it with love. Bill apparently loved Michelle a great deal. He is now making a great effort to make a difference in helping those with breast cancer and in finding a cure.

Losing My Breast Round Two

I lost my breast a second time in March of 2006. I continued to have on and off pain since my mastectomy back in January of 2006. Driving with my stick shift car was a difficult for me because it required too much movement and exertion on my right chest. A few days before my spring break I was running a fever and my skin near my needle port for my implant itched. I stayed home the next day from work to rest and felt better though my itch was still itching. A day or two later that same spot started turning a red color and it was starting to become tender. It occurred over the weekend and I decided to go in on Monday to get it looked at. By Sunday, I was in miserable pain.

My first mistake is to allow myself to get to this pain. I should have went in earlier, even to the on call doctor over the weekend. Hound your docs. We pay them big bucks and our health is the number one priority! We know our body the best! By the time I went in, the plastic surgeon took one look at it and said I had an infection. He put me on antibiotics for seven days, high dosage. I spent two more days in miserable pain. My red "spot" started to develop into what looked like a big blister. By Wednesday, I went back in to see my doctor because the simple act of wearing clothes and having my clothes rub against my infected spot put tears in my eyes.


I spent my spring "break" in enormous pain both physically, mentally and emotionally. He had me go for an emergency surgery that day to take my implant out. Emergency, I think not. I waited several hours before they finally wheeled me in. RJ was growing considerably short tempered with my plastic surgeon and vented to the nurse.

There was little pain when I woke up. RJ told me that his venting must have helped. The plastic surgeon went in and took out my implant. While he was in there, he scooped out a great deal of the infection. The surgeon spoke to RJ and explained that my infection was pretty severe. I went home that night still feeling very out of it from the anesthesia.

It wasn't until the next day that it sunk in that I lost my breast a second time. I looked down at my chest and my right breast was gone. I had my drain in again and my right breast was gone. It was just gone... I've never considered myself a vain person. I've always enjoyed having a flat chest because I got away without having to wear a sports bra if I forgot it. I never had to worry about people staring at my chest. Sports was fun for me and I never had the extra weight up there. I remember my plastic surgeon telling me during my consultation with him that many women go with a larger size. A larger size was not an interest for me....I only long for the breast that I had. My A cup was perfect for me. I've now become a lopsided A cup.

I didn't think it would bother me that much at first. I put a strong and courageous face on and walked around lopsided for a long time. I occasionally noticed a few people stare at my chest. I noticed that I did not want to wear light tops as much. I started feeling very self cautious at the gym.

As an alternative route I got fitted for my prosthesis and bras with pockets to hold the prosthesis in. I started wearing that around. It made me realize that it was nice to feeling "normal" and that people may be staring at me but not because I was lopsided.

As I blog now, I have tears rolling down my face. It's been over a year and a half now and the emotional pain and scar is still very real. Every morning and evening when I dress and undress is a reminder that I only have one breast.

I will choose another plastic surgeon and will need to see if having that breast reconstructed again is an option. I have so many fears. I fear the knife, being put asleep, the pain from the implant and the possibility that my body will reject it again. There are no guarantees that I will ever have a right breast again.

I notice everyone's breast now. I normally know if they are real or fake. I have become very resentful of those who have had breast enlargement for the sake of having larger breasts. They subject their body to this pain to have a larger breast? It doesn't make sense to me. They should be thankful that they have two healthy breasts!

I am very appreciative that I was not born with an obvious handicap. I admire all the people that live with anything that an "average" person doesn't have. It isn't easy not being "normal" when we live in a world that glorifies plastic surgery and large breasts.