Friday, June 6, 2008

So what does it feel like to have a lumpectomy?

I found this entry on another blog that I have. I never published it.

I wrote it on May 15, the day after my lumpectomy.

I'm publishing it here in case it can help anyone else who need to go through it:

I really did not think I would blog about this. It's very personal. But, since I found out that I have breast cancer (just a little over a week ago), I have been doing non-stop research into what I have and all my options. What was missing was a personal narrative from someone who has gone through it. I could find plenty of factual information, and I have a great workbook that they gave me when I was diagnosed. And there are plenty of quotes from survivors. But no real story from someone going through it. So in hopes that this helps someone, and maybe helps me too, I'm going to describe what I have experienced so far.

First, I got a phone call from the Breast Center after a routine mammogram. I had the mammogram on April 21st, and I got the call on April 26. They have never called me before, I usually get a letter. They told me that it was probably nothing to worry about, but they did see something that they should take a closer look at. I needed a special view mammogram and an ultrasound. I called my OB to make sure that she agreed and to see if she had any other recommendations. She is wonderful woman whom I trust and respect. I have known her for over ten years. She said to go ahead and have the tests as soon as I could. I scheduled them for April 30.

The lump is very close to my chest wall, so they had a hard time getting a good picture of it on this newest mammogram. They even tried turning the machine upside down. One time, they stuck both of my breasts on the platform with me facing forward, I called that the "Baywatch" view. I still wasn't worried. After getting the phone call, I went searching for a lump and I did find one, so I was able to point the ultrasound lady right to it. I still wasn't worried. She left the room to give the results to the radiologist. He sent her back in to look at my lymph nodes. That is when I knew that they thought I had cancer.

The radiologist came and and said that he didn't tell people very often that he thought they had cancer until he had a biopsy to prove it, but in my case, he was very worried that this lump was cancerous.

They scheduled me for an ultrasound guided core needle biopsy for the next day. He numbed the area (lidocaine), made a small incision, then stuck this thick needle with a big plastic cassette on it into the lump. That part did not hurt at all. Then, he pulled a trigger that snaps a sheath down over the needle to take and seal the sample. That part hurt. It felt like getting your ear pierced over and over again, except that was not my ear. I cried through the whole thing. Not from the pain. I was sad and scared because I could have cancer. My Mom had breast cancer. She got through that very well. Years later, she got lung cancer and that was a long sad fight until she died. Knowing that I could have cancer now just brought all of those memories flooding back.

I got my diagnosis two days later, on April 4th. It is a T1 invasive ductal carcinoma. The most common kind of breast cancer. Even with all the tests and preparation, I was truly shocked to hear that I have cancer. How could I? I'm young, I feel fine, I had no warning.

Now I had to decide who to tell. I told my niece, my kids, and my brother and sister, of course. I told my youngest son's principal and asked her to tell his teachers. I told his cub scout den leader. My oldest son wanted to tell people himself, so I didn't call anyone at his school. My rule at work is this: if I come into frequent contact with someone, or they rely on my to respond to meeting requests and e-mails, well then, they need to know. It was very hard to stop by people's cubes and tell them. I did not want to do it via e-mail. I didn't think that was fair. I told people because I thought that there is no way they can be supportive and patient with me if they don't know what is going on. I told all my neighbors too, for the same reason. People have responded with courage, affection, encouragement, kinds thoughts, prayers and support. It has made all the difference. While I know that to a certain extent, I have to face this alone, I do not feel alone at all. I feel loved and supported.

I called my OB again for her advice, and she recommended the same surgeon that I had seen ten years ago when I found a lump that turned out to be nothing.

I got an appointment to see her on May 8th. This all happened so fast. And I am grateful. The waiting and not knowing were excrutiating. My surgeon sees her cancer patients after hours so she can take more time with them. I showed up with a page of questions and she patiently answered each one. She also treated me like a person; we talked about other things and joked around too. She said that I needed a lumpectomy, radiation and hormone therapy for sure. Chemotherapy would be required if the cancer had spread to my lymph nodes, or if I failed a genetic test that is an excellent predictor for recurrence.

I saw her on Tuesday, and my surgery was scheduled for the following Monday, yesterday, May 14. I am not a big fan of any kind of pill or drug. I rarely even take vitamins. But, I told her that I was having trouble with basic things like eating, sleeping and not crying. I thought I needed something to help me through. She gave me a prescription for Xanax. I still resist taking it, but she recommended that I take one six hours before my surgery to help me deal with anxiety and the fact that I could not eat and drink for such a long time. I have a lot of trouble with that. I'm one of those people who snacks every couple of hours and always has a cup of tea or glass of water in my hand.

So, yesterday morning, I made sure my bag was packed. Ugly bra that hooks in the front. I needed one since I will have a sore arm where they take some lymph nodes. I tried Target and Dick's Sporting Goods first, no luck. Then I went to Dillard's. A very nice lady helped me choose one without an underwire so that couldn't press against my bandage, and a bigger size so it wouldn't squeeze my side too much either. Then my husband said, "let's go look at the patio dresses." I had a hard time with this. He was thinking practical, I was thinking that only little old ladies wear those. I did pick one with a sixty's looking flower for the zipper pull. It reminds me of Scoobie Doo. I hated buying it, so I went right to Victoria's Secret and bought a nice black lace thong to counteract the dowdy dress. The dress bugged me so much that my kids tell me "Mom, get over the dress already."

Also in the bag was a pillow to put between me and the seat belt on my ride home, some funny books (Woody Allen and Nora Ephron), a cliff bar and a bottle of water.

After I was packed and the house was a little straightened up, I took the Xanax. Then I made myself stay awake to pay some bills and do other chores. I finally went down for an hour's nap before we had to leave. That helped.

I had my surgery at a plastic surgery center, not a hospital. I was a little worried that they would not be as well equipped. But, they were terrific. I waited in the waiting room for about 20 minutes (we were early too). Then a funny, kind, warm lady took me back to get prepared. They wanted a urine sample for some reason. A pretty sick request to make at 2 in the afternoon after I was not allowed to eat or drink since midnight. I managed somehow. Then I changed into a hospital johnnie and some socks to keep my feet warm. She covered me with warm blankets too. She asked me a bunch of questions and had me write "yes" and my initials on the breast with the tumor. She gave me an I.V. She asked me to take a Zantac (for stomach acid) and some Celebrex. I asked her about both drugs since I had never taken them. She said Celebrex is good for pain, so they wanted to give it to me before the surgery. I was pretty excited about the two sips of water.

Then the anesthesiologist came in and asked some questions, and my surgeon came in to talk to me. She needed to listen to my heart and lungs, so I had to sit forward. She snapped my new thong and said it was cute and she wanted to know where I got it. That made me laugh, not an easy thing to do at this point. Then the nurses came to get me. They wheeled me down a short hall and into the operating room. I got pretty scared. I am very good at denial, and have made some pretty good use of it since I've faced this, but looking up at the surgical lights, and having your arms placed on those two little boards out to the side makes it very hard to deny that you are about to have an operation.

My sister recommended that I see "The Secret" before my surgery. I didn't have time. But I did get the book and read some of it. It was a good reminder about how important your attitude is. So, before my surgery, I visualized myself waking up easily afterwards, happy and refreshed.

They put a gas mask over my face. Oxygen first, then something that smelled like medicine. The people in the operating room chatted with me until I fell asleep. It really helped to make me feel calm.

The next thing I knew, I was waking up in the recovery room. My husband said that I had woken up before and the surgeon had talked with me. I have no memory of that. The nurse asked if I was in pain, and I was uncomfortable, so she gave me a pain pill. My husband says that all I could talk about was how nice everyone was. I guess that made a huge impression on me. It still does.

And so, they let him drive me home. We had a flat tire on the way! So, we waited for the tow truck, and my niece waited for me at the tire place so she could take me home while my husband could take care of the tire and get my prescriptions filled.

Here is what it feels like now. I have a bandage under my arm, and a drainage tube attached to a bulb. The kids and I call the bulb my "grenade" because it looks a little like one. That part is pretty sensitive, and it hurts when I move my arm. I have another bandage over the place where they took the lump. Every once in a while that has a deep, dull ache. What really hurts is my nipple. I had what is called a sentinal node biopsy. They insert blue dye that travels to the first lymph nodes that the cancer would travel to. So they know which ones to remove. Judging from the blue dots around my aureola, and the one right through my nipple, I think that is where they injected the dye. I am amazed that that hurts more than my incisions. The bandages are covered in plastic, so I can take a shower today. And I get to take them off tomorrow.
I have antibiotics and pain pills. I can take a pain pill every four hours. I try to stretch it out by an extra half hour or hour so I don't take so much, but I get pretty uncomfortable when I do that.

So, I guess my advice for anyone else who is going through this would be, do your homework so you know your options, find a team of people that make you feel comfortable and cared for, don't be afraid to ask for help with the emotional side of it, and do what you can to be grateful for all the little blessings that come your way as you go through this.

Encouragement

A couple of weeks ago, the kids and I rode our bikes over to the local (very local - this was a pretty slacker bike ride I assure you) mall. I had not been on that bike for SEVENTEEN years! Uh, so I guess it was high time.

We had dinner (my husband met us there – his bike had a flat) and we went to Borders. I stumbled upon this book called “Younger Next Year”. I leafed through it and liked it so I bought it and boy am I glad I did!

The book provides six rules to live by and says that if you follow them faithfully then you will find that 70% of aging is optional and you will be in great shape until the end of your days. The book is written by an internist and his patient who is in his seventies and skiing, biking, rowing and generally having more active fun than I’ve ever had. Age is just not an issue for this guy and I admire him greatly.

Their tone is realistic optimism, and I found it very encouraging. Their rules are backed up by both science and experience and they sound true to me. I’ve always felt that the rules were “Use it or lose it” and “Great circulation is key” and their findings back those rules.

What they gave me was motivation to buy a heart monitor, buy their journal, and get out there and move every single day, not just a couple of days a week. They recommend that you work out six days a week – four cardio and two weight bearing sessions. They give you guidelines that are easy to follow for how long and how hard you should be working. And they freely acknowledge that at the start all that you can do may not be very impressive – heck you may never get to an impressive level. But what you will be doing is daily sending your body the right messages so it stays in growth and repair mode and doesn’t lapse into energy conserving decay mode.

I’ve read plenty of fitness books and they were all too hard core or too time consuming and/or complicated to get me to make long term changes. Not this book. What it gave me was the encouragement, organization, and motivation to make a daily change – so far I’m sore, I look like a spaz in class at the gym – and I’m loving it.

In my new found quest for cardio, I found a class at the gym that is my absolute favorite – it is called “Zumba”. It is a mix of salsa and hip hop. If the instructor is good, it is an hour of heart pumping hilarity. You know you are working hard, but you are too busy laughing and shaking it to care. I’m also hearing new music. My favorite instructor – this totally amazing and jubilant fellow named Chet – does creative choreography and plays songs like “Apple Bottom Jeans”. I would not have heard that song and I definitely would not be out there strutting my stuff to that song were it not for Chet. I get all depressed if I have to miss one of his classes now. Yes, you heard me, I am pretty much scheduling my life around a hip hop class!

Oh yes, I still dance contra and I still do Pilates Reformer classes, I just added a bunch of new activities to the mix.

Another thing that I've been enjoying is MBT shoes. I found some at an outlet and got a pair for me, one of my sons (the other one wasn't with us and there is no way I'm paying that much for shoes he did not try on and we can't return), and my husband. I go for walks with them and my Nordic Walking poles. I'm sure I'm quite a sight. Tell you what, you can tell those shoes are working - the muscles in your legs and - ahem - hind quarters will let you know! I recommend that you search high and low for a sale on these little gems though - they are expensive.