August 2009: radiation therapy and shingles

I should never have had radiation. Toward the end of my chemotherapy, I went to see a radiation oncologist for an initial consultation. We discussed my cancer and the genetic attributes. I told him I was planning on undergoing an oopherectomy and bilateral mastectomy. He explained that my case was not clear-cut, due to the fact that I had only one lymph node involvement. Had no nodes been affected, I would not need radiation, period. If there were three or more positive nodes, I would definitely need radiation. One node was not so clear. He told me that his opinion was that I don’t need radiation because of the surgeries that I was about to have; he felt that I was being very aggressive with my treatment and that that was enough. I was so relieved – that’s what I wanted to hear.

Well, my oncologist wasn’t exactly thrilled with that answer. She wanted to take my case to the “tumor board” and get more opinions. She did and then told me that out of 5 radiation oncologists there, 3 said yes and 2 said no – it caused some controversy apparently. She asked me to go to another radiation oncologist for a second opinion and so I did. This time, I was told that, although it’s borderline, I should just do it because I’m young and I have young kids and I should do everything in my power to improve my chances of survival and minimize potential for recurrence.

My Oncologist agreed that I should do everything I could to improve my chances, too. Soooo…reluctantly, I agreed to do it only because I couldn’t think of a good enough reason NOT to. I was to receive 28 sessions of radiation.

The radiation itself was easy, but going 5 days a week was a pain in the ass. Toward the end I was quite sore and raw in a few places in my armpit area. The sore spots in my armpit began to welt but I thought it was just my wounds healing – so did my Oncologist. It started to spread down my inner arm to my elbow and it itched like MAD! I thought I had bed bugs or scabies! A week and a half later I saw my radiation oncologist for a follow up and she took one look at the rash and told me I have Shingles. Apparently no one bothered to tell me that cancer patients sometimes develop shingles from their weakened immune systems. Had I known this, I would have sought treatment sooner for this rash – as it turns out, I found out that shingles is best treated when the medicine is started within 72 hours of the rash showing up. I was well beyond that.

The medicine I was given did not help at all. It itched beyond anything I could even try and explain. After 4 weeks of having this rash, I woke up one morning in serious pain all over and I had swelling in my armpit the size of a tennis ball. I went to the ER and ended up confined in the hospital for a week with a bad Staph infection!! 

When I left the hospital, the rash and itching was not better. The infection was better, but I had to go home with a drain coming out of my armpit; it came out a few days later.

After 8 weeks of suffering, I went to see my Oncologist for a follow-up visit and she, like me, had had enough of this rash! She sent me to see her husband, who happens to be an Infectious Disease doctor, that day. He told me that it looks a lot like Shingles, but he’s never seen nor heard of shingles appearing on the radiation site like the rash I had. He thought it may just be an allergic reaction to the radiation!

He sent me to a dermatologist for a skin biopsy. The dermatologist agreed. She told me that although Shingles can last for several months, it’s the persistent nerve pain that lasts and not the actual rash. This was the first time I had heard that! So she took the skin biopsy and the results came back a week later indicating no sign of shingles, but there was a bacterial infection.

She gave me a topical steroid cream to help the rash and itch (finally something to help the itch!), another topical ointment for the bacterial infection and an oral antibiotic – Amoxicillin. After just two days, the rash started to go away and the itching dissipated! Hallelujah!

I truly believe that the radiation therapy was ‘the straw that broke the camel’s back’ and that had I not done the radiation, none of this shingles/staph infection/allergic reaction crap would be going on – I know I can’t do anything about it now, but I’m really pissed that I decided to go through with the radiation even though I really didn’t feel it was necessary!

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!