February 2009: my bilateral mastectomy and tram flap breast reconstruction

Eight months after diagnosis and five weeks after finishing chemotherapy, I underwent a prophylactic bilateral mastectomy with immediate TRAM flap reconstruction. I was in surgery for 11 hours and in the hospital for 1 week.

The recovery was much more difficult than I had anticipated and the pain much more severe. I couldn’t bend over or stand completely erect. I couldn’t twist my torso. Getting in and out of bed was very hard, too – I had to use a large step stool because holding my leg up too high was painful also.

After the initial few weeks of recuperation, I did not look anywhere near normal. Perhaps I didn’t ask the plastic surgeon enough questions about what to expect, but then I had no idea what to ask having never been there before. I thought that after a few weeks of recovery and healing I would have a flatter belly and nice, new, perky boobs.

That was not the case. I was left with pouches of fat on my hips where the hip-to-hip incision was done. The surgeon said that it was normal because of how they removed skin and pulled skin down to reattach …something like that. Anyway, he said that it will be fixed. He keeps saying that he’ll “fix anything that’s not perfect” every time I see him.

My boobs are not so perky and they seem to continue onto my sides and it’s gross. I can’t wear a bra because of that extra skin and puffiness on the sides. He says that will be fixed, too.

I guess I should feel reassured and maybe I was naïve to think that I would look great and transformed several weeks after the surgery. I will try and be positive and patient and see what happens after 6 months.

October 2008: chemotherapy side effects - weight gain?!? things the doctors don't tell you about...

I always thought – thanks to TV and movies – that people going through chemotherapy lose weight. Well, when I started to gain weight after starting chemo I asked my doctor why and she explained that with most cancers, yes, patients lose weight, but not with breast cancer. Great! I was finally starting to lose some of the “baby weight” that I was still carrying two years after having my last baby and was still about 10 pounds overweight. Suddenly I was 30 pounds heavier and had no clothes that fit me and a huge disgust for me and my appearance! 

Apparently the weight gain is from 1) steroids that they pump into you with the chemo and 2) chemo makes your body basically go into menopause – or “chemopause” as some call it – which involves a slowing of the metabolism, and, thus, weight gain! Now I have body image issues on top of everything else!

I don’t know what I would have done, or could have done, differently had I known, but I find it ridiculous that this is not told to patients beforehand. Do the doctors and nurses think that we’d consider not having chemotherapy if we were told ahead of time that it will make us gain weight?

August 2008: breast cancer treatment plan and start chemotherapy

Okay, moved to Florida and getting settled in. Saw my new oncologist and the plan is a 3-drug program: start with two, A & C – Adriamycin & cytocin – four treatments every 2 weeks. Followed by Taxol, weekly, for three months. Total of 6 months of chemotherapy.

I had a port surgically implanted in my upper right chest area for the chemo; it saved my veins from having to be punctured every time with an IV.

I started chemo in September 2008. It was really horrible. It hit me every time about three hours after treatment ended and it lasted about 10 days. I felt tired, dizzy and nauseous constantly. It was horrible. And it was cumulative, even though the doctor said it would not be. It was so bad that I refused to have the 4th and final dose – I just couldn’t take it. I told the doctor that I felt as though I should be admitted to the hospital to have this chemo. It was just too much for me. I was going through this hell and had to take care of my girls, too, and it was just so hard.

Forgot to mention, my hair started to fall out on day 13, the day before my second round, so I had Chris just shave it all off right away. Why bother going through it gradually? He didn’t realize how emotional it would be for me and he just laughed. The girls took a couple of days to get used to it, but they handled it pretty well. I chose to use a scarf to cover my head; the wig that I had purchased beforehand was too itchy and hot.

While I took a few weeks off, I found a new oncologist at a breast cancer center much closer to home. I was a great place. I started Taxol there and it was like night and day compared to the A/C. I was tired on the day I received the taxol, but that was just from the Benadryl that they give you to avoid allergic reactions, but that was it. Actually, I often felt exhausted a few days later because I felt so good that I was doing too much. I kept forgetting that my body was still receiving chemo and going through a lot and I shouldn’t over-do it.

My hair started to grow back a few weeks before I finished the Taxol. A few weeks after I finished the Taxol, my eyebrows and eyelashes started to fall out!