1 year Anniversay of Bilateral Mastectomy

Well, I've kind of been waiting to write this post for awhile. Today is the one year anniversary of my bilateral mastectomy. I can't really believe it's been a whole year. That seems hard to fathom. I've never written about my mastectomy - it's just not something I could write about. But, now I think I should. I've forgotten some of it - maybe because I haven't written about it for a year, or maybe because my mind just doesn't want to deal with remembering the worst day of my life. I asked Rick to help me remember what happened, but he says he doesn't remember much - which is weird, because he never forgets anything. Hmmmm. Maybe it was his worst day, too. Here's what I do remember...

Rick and I went to the hospital around 9:00 am. After I checked in, Rick and I sat in the waiting room. Rick was holding on tight to my arm. I asked him why. He said that he was afraid that if he didn't hold on to me, I'd run out the exit. Which was probably true. He asked if I had my red lipstick. (I had just finished reading "Why I Wore Lipstick To My Mastectomy" and she had worn red lipstick for hers). I was sad because I only had pink lipstick. I remember that they were behind for some reason that morning, and things were delayed for awhile. Nothing like dragging it out, huh? The nurse took me back and told me to undress and put a hospital gown on. I do remember how I felt as I took off my bra for the last time. I swallowed a big lump in my throat, and thought, "This is the last time I'm going to wear a bra." After I was settled in the pre-op waiting area, my parents came in to visit me. I took one look at them and started crying. I remember my dad hugging me and telling me that he was so sorry. We talked for awhile. Then, they went out to the waiting room, and Rick and I were alone. I wrote in my journal for awhile. It was my first entry in that journal. I think I'll share here what I wrote:

"I have cancer. I was diagnosed two months ago - August 20, 2008. I haven't wanted to write it down. I've been in kind of a denial, but as of today, there will be no more denials. In 1/2 hour, I'm having a bilateral mastectomy. Yep, they are cutting off both breasts. It's been a tough decision - one I had to make myself. No doctor wanted to be the one to say, "Yes, we have to do it." Right now I just want to write down how I feel about this. I'm so scared. I'm scared to go to sleep. I'm scared to wake up. I'm scared of what I'll look like. I'm scared they'll make me go home too soon. I'm scared to take care of the drains. I'm scared of starting chemo. I'm scared of the chemo cocktail and what it will do to me. I'm scared of losing my hair. I'm scared of the IV they are trying to put in right now - they can't find a vein. This is going to hurt. I just took my bra off for the last time. Because I'll have expanders inside and no nipples, I won't need to wear one. I'm so scared."

So, that's what I wrote about 1/2 before I went in for surgery. And no, they couldn't find a vein. They tried quite a few times, and I was so upset, that they finally said they would put me to sleep in the operating room before they put an IV in. Surgery time came and Rick gave me a hug. They wheeled me back, and the closer I got to the surgery room, the more I started to panic. It felt like I couldn't breathe. We entered the room, and people were all around me. They said they would put a mask over my face and I'd go to sleep. I saw them playing around with the mask, and I just started to cry, uncontrollably. I couldn't breath, and I was trying to get off of the table. I felt like running away as fast as I could. Who the hell cares about the cancer. I CANNOT do this. The nurse grabbed me and helped me lie back down. I must have look very frightened, because she asked me what was wrong. ??!!!! Um, I'm getting my chest cut off! What do you mean, what's wrong?! I told her I was scared. She asked me if I was scared of going to sleep, and I said, "No, I'm scared of waking up." She put her arms around me and gave me a hug, the mask went on my face, and that's the last thing I remember. My parents told me that it took about 4-5 hours. I do know that two doctors operated on me that day - first the surgeon removed all of the breast tissue. And then, the plastic surgeon put expanders in and closed the wounds. I don't remember much about when I woke up. I guess my parents came in to see me, but I don't remember that. I was pretty drugged up and the pain was awful. I had drains in and a pain pump with morphine. My kids came to see me and I'm sure others did too, but everything is a blur. All I can remember for the first couple of days, is pain. I ended up staying in the hospital for 5 days. The pain was bad, and I was draining tons of fluid. I remember how awful it felt to look down and realize that I had no boobs anymore. I don't even know how to describe that. There are no words for that.

Well, that's about all I can write for now. I'll describe the recovery later. And, of course, that terrible moment when the bandages came off, but not now. This is enough for now.

I Find Out - I HAVE CANCER...

After I had a needle-guided biopsy, the waiting began. Don't you hate it when the results from tests take FOREVER?! The waiting was hard. I just wanted to know. I felt like the world should just stop and hold it's breath until my results came in. I mean, how long could it possibly take to check for cancer?! I called the surgeon's office on Monday and Tuesday, asking if the results were back. He gently explained that it was a complicated thing they had to do - first they had to dye the tissue, then they had to slice it up - like slicing bread - and then they had to test each tiny piece to make sure we got everything. If any little bit of the DCIS was touching the dyed area, then the "borders" wouldn't be clear and we'd have to go back in and take more out.

So, I tried to be patient. I went to work on Wednesday, and it was hard to concentrate. By early afternoon, I figured another day had gone by without results. As my boss, and friend, Carol, was walking out the door at around 3:15 pm, my cell phone rang. She hesitated, and I looked at the caller ID. "It's the surgeon's office." Carol came back in as I answered the phone. It was Dr. Robinson. He said, "Kara, we got the results of your biopsy back. (Right then, I figured it had to be negative, because why would he tell me I have cancer over the phone?!). "You've got two kinds of breast cancer." Just like that. A simple statement. You've got cancer.

How many people have heard those terrible, frightening words? I bet every one of you who has heard those words remembers where you were when you heard them. It's not something that I ever thought I'd hear. I looked at Carol, and nodded. She sank down on the sofa. I somehow found myself sitting down in my chair. I continued to just listen...

"You've got two kinds of cancer. One is non-invasive. It's the Ductal Carcinoma In Situ that we talked about. But, as they were slicing the tissue open, they found a small tumor. That is invasive. This changes things."
"How?"
"Well, we'll need to check the surrounding tissue - especially check the lymph nodes to see if it has spread... blah, blah, blah..."
... and I was sucked into the world of cancer speak. Another biospy. Didn't get it all. Sentinal lymph node dissection. Possibly chemo. Maybe mastectomy (ok, I didn't hear that - I just thought it). The surgeon tried to explain where we needed to go from there. It was hard to listen and comprehend. I look at Carol the whole time. It's like she kept me grounded. If she wouldn't have been there, I couldn't have held it together. I calmly made an appointment to see the surgeon again. Then, I hung up the phone.

"Kara, I'm so sorry." Carol was in tears. Her mom had died from breast cancer. I realized then what awful news this was for her to hear. And then she said, "Shantel and I just knew it would be positive." Huh?!
"What do you mean, you knew?"
"We just felt like there was a huge change coming for you - that the test results would be positive." Huh. Ok.

Carol went home, and I got into my car to head to an appointment I had. Again, I thought the world would just stop and hold it's breath for a minute. But, nothing like that happened. I called my husband. Here's how the conversation went...

"Hi, what's up?"
"Well, I got the results from the biopsy back."
"Yeah?"
"I've got two kinds of breast cancer." Pause.
"What?" I repeat myself.
"No."
"Yes, yes I do."
"No you don't. Who told you that?"

Isn't it just maddening when someone won't believe you. Did he think I was making it up?!

"Yes, Rick, I just talked to the surgeon. He found the DCIS, which is non-invasive, but they also found a tumor that didn't show up on the mammogram. That's invasive. I have breast cancer." Another long pause.

You see, neither Rick nor I thought for even one second that the test results would be positive. Neither one of us saw this coming. It just kind of hit us like a brick wall.
"I'm so sorry, Kara. Do you want me to come home right now? I don't want you to be alone." Sweet.
"Nope, I'm going to get my nails done."
"What?! No - you can't do that."
"Look, I need NORMAL! I need to do something normal right now. I can't just sit and think about this. I'll go crazy."

We finished our conversation, and I headed to get my nails done. On the way, I called my mom and my sister. My mom was calm and reassuring. My sister was hysterical - for a minute - and then she calmed down. You see, she had just lost her sister-in-law to breast cancer a few month earlier. What a nightmare. I found out much later that my mother had hung up the phone and collapsed on the floor. Into a fetal position. My dad couldn't get her up. She just lay there, sobbing. I'm glad I didn't know that at the time. I needed my mom's strength. She never showed anything but a positive, fighting attitude when she was around me.

When I got home, I had the very unpleasant task of telling my children. My oldest was off serving an LDS mission in Japan - he'd been gone for almost a year and a half. I called the mission home and talked to the president of the mission. (you can't just call and talk to you son - it's not allowed). The president told me to write a letter to Grant and mail it asap. He would personally give it to Grant and be there to talk to him. So, I sat down and wrote the letter. It was a hard one to write - I mean, what do you say? I tried to be upbeat and positive... Everything was going to be fine - don't worry. Forget about me and yourself, and burying yourself in the work - Heavenly Father will take care of things, etc.

(His reaction to the letter? He emailed me - "I knew you would have cancer. I just had a feeling when you told me you had been sick that you'd have cancer." Funny thing - after my previous email told him that I wasn't feeling well and was having tests done, he emailed me back and said, "Well, don't get cancer! HAHA!" Yeah. Then, the next thing he knows, he gets a letter telling him I have cancer!)

Then, I had to tell my 18 year old. His reaction? "Yeah, I knew this was going to happen." Again, HUH?! He said, "It's going to be ok, Mom."

Then I told my 14 year old. "What? What does that mean?" He was worried. But I reassured him.

Then, last of all, I told my 11 year old. "Matthew, remember the surgery I had? Well, the doctor called and he said that I have breast cancer." "That sucks. What does it mean?" "It's ok. I have a really good doctor, and he is going to make me better. I'll be sick for awhile, and probably have another surgery, but I'll be fine after that. Ok?" "Ok." And then he went back to playing his video game. I loved his reaction the best.

I don't blame anyone for reacting the way they did - denying, crying, questioning, etc. What would you do? You hear this awful thing and it's hard to cover up that first reaction. Anyway, the weird thing about that day was what came out of everyone's mouths: "I knew it. We knew the test results would be positive." Every person, except me and Rick, KNEW I'd have breast cancer. Even my kids. The only explanation I could come up with... Heavenly Father prepared every one of them to hear that news. He prepared them! He helped them deal with it. I'm so glad that happened.

It was a hard day - possibly the hardest one to that point. And I had NO IDEA what was coming. But, I knew I had the love and support of every person around me.

My First Biopsy - August 15, 2008

My first biopsy was a needle-guided biopsy. I went to the same place in the hospital where I went to get my mammograms. I changed into a hospital gown and the nurses led me into the mammogram room. The radiologist came in to insert the needle. I have to admit, I was scared. I really am quite a baby when it comes to being stuck with a needle. I would seriously rather have the flu, than get a flu shot!

The doctor numbed the area where he would be putting the needle. That really hurt. It stung. Then, because he needed to see where the white spots were – so he could put the needle in the correct place – they put me back in to the mammogram clamps. It was painful and I was scared. I remember the nurses being so nice, calling me honey, and trying to help me calm down. When I was clamped in pretty tight, they told me not to move (yeah, right) and the doctor put the needle into my left breast. It looked to me like the needle was about 8 inches long, but they really tried to get me to not look. In reality, there was a normal sized needle and then a long piece of metal attached to the end. The needle was pushed all the way into my breast – right to the part that had the DCIS-looking spots. The metal part was left hanging out of my chest. I made it through that part without getting up and running, screaming, out of the hospital. But, probably only because I had a hospital gown on and I would have looked ridiculous. The nurses were all worried about the metal sticking out of my breast, so they were trying to cover it up with gauze. You can imagine, I’m sure, how hard that would be. I kept telling them to just leave it alone – I really didn’t care if anyone saw the stupid piece of metal sticking out. I was really worried that if they kept touching it, it would move and I’d have to go through the placement all over again. I got kind of angry with them, asking them if it was me they were worried about, or everyone else in the hospital having to see it!

Rick and I were led into a holding room and we were told it wouldn’t be much longer before the surgery. Several hours later, I was still waiting there, with the needle sticking out of my boob, and all the numbing had worn off. I was in pain and tired and stressed. Rick was mad. Finally, the surgeon came in and let me know what they would be doing. The anesthesiologist came in to talk to me and put my IV in (another of my “favorite” things!). When I was ready, they wheeled me away and I don’t remember anything after that.

Rick brought me home and I remember looking at the scar with all the stitches. It looked like the shape of a half-moon. Then, the waiting began. Did I have cancer? Rick and I didn’t think so. It was just too preposterous to believe.

Surgeon Consultation - surgery looms...

This is the 2nd installment of the cancer journey (the part that happened before I started my blog). These blog posts are listed under "Let's Start At The Beginning".

After talking to the radiologist at the hospital after my second mammogram, I made an appointment with a surgeon to talk about having a biopsy. A few days before I met with the surgeon, I went to participate in the Relay For Life cancer walk. This was to support my cousin Wendy, who had been diagnosed with DCIS breast cancer about a year earlier. Because I was such a dork during her cancer journey - I didn't even call her (I relied on my mom for information) - I wanted to go and support her by walking at the cancer walk. When I got there, my family heard that my mammogram had discovered something. I was worried, but I remember Wendy saying..."Don't worry until you find out if you really do have it". That was good advice. I tried not to think about it for the rest of the night. Three days later, on August 12, 2009, I met with the surgeon. I really like Dr. ***, who reminded me of Mickey Rooney. Rick and I both were at this appointment. The doctor explained things to us in a little more detail than the radiologist did. He explained that because he wouldn't be able to see the calcifications during the surgery, we would have to do a "needle-guided" biopsy. The radiologist would place a long needle into the breast, pointing to the area that needed to be removed. The surgeon would use the needle to guide him down to the breast tissue where the calcifications were located and he would take a large area out. The calcifications were quite far back - almost right against the chest wall (muscle), which is the reason for the needle. I HATE needles. I know that most people don't like them, but I really HATE them. I was very nervous for this surgery.

Rick and I had questions, of course: How much tissue had to be removed? What would the breast look like after that? If it was DCIS, what then? Radiation? Chemo? What? Dr. *** tried to answer all of our questions, but it was still a little too early for most of the answers. He did say that if it was DCIS, I would then have to do 6 weeks of radiation after the surgery.

After seeing the doctor, I called my cousin, Wendy. I asked her about the biopsy, the radiation, and other things. I remember that as soon as she answered the phone, I started crying. I was just so scared. But, I knew that Wendy survived hers, so I would be ok. I hoped. She was very helpful and had such a great attitude. She has been a rock during this whole cancer journey - she calls me all the time to check on me, she talks me through things. I really love her.

So, the surgery was scheduled for 3 days later - August 15, 2009.

What's wrong with me? July 2008

I've been wanting to go back and document my entire cancer journey. I didn't start blogging about it until 4 months into the journey, when I cut my hair off. So, here is the start of my breast cancer journey...

In July of 2008, I became very sick. I was having some bad pains in my lower body and just didn’t feel very good. Earlier in the year, I had a bladder/kidney infection, and I felt the same way, so I thought that’s what was wrong with me. I went to see the doctor because I knew I’d need an antibiotic to clear the infection up. I didn’t get to see my regular doctor. The doctor who was working at the time thought it was a bladder infection and gave me an antibiotic to help. The infection cleared up, but 3 weeks later it came back. So I went back to the doctor's office. He asked me when I had last had a pap smear. I told him in had been 3 years (right before my hysterectomy). He suggested I have that done so we could see if there was a different problem. I decided that I should probably have a mammogram, too. It had been 3 years since my last one as well. It was just kind of an afterthought - it had nothing to do with the problem I was having (which I thought had something to do with my cervix). So, they did the pap smear and found that my cervix was quite inflamed and gave me some more antibiotics. Then a few days later they did a mammogram. A few days after the mammogram, I got a letter that said they had seen something on the mammogram - there were some white spots back by the chest wall and they wanted a better look. It made me very nervous – ok, let’s be honest, it made me scared.

Before going back for a second mammogram, I had an appointment with a gynecologist to discuss the problem I was having with the pain and infection of my cervix. While talking to him, I mentioned receiving a letter that suggested I have a second mammogram. He told me that it was very normal to get those letters. That it happened all the time. In fact, his wife had received one of those letters and when she went back, everything was fine. He said that most of the time there is nothing wrong. So, he made me feel better about it. I wasn’t as scared.

When I got to the hospital for the second mammogram, I got ready and went into the mammogram room. I hate having mammograms. They are very uncomfortable. I asked the technician if she could show me the first mammogram films so that I could see the white spots. She showed me and said that we were lucky that they had even shown up, because they were so far back against the chest wall. She took some more pictures. It really hurt.. I remember the techs were feeling bad and kept apologizing. They had to pull my breast super far away from my chest and they use some attachments that really hurt. After the radiologist looked at the pictures, he called me back to talk about it. He showed me that there was a large group of white spots, called calcifications, in my left breast. He felt that it would be smart to get a biopsy done - just in case there was something called DCIS there. DCIS is ductal (in the milk ducts) carcinoma (any cancer of the skin or tissue) in situ (Latin for in its original place). He said that if it was DCIS, it would be smart to cut it out of there, because if it’s left, it can grow into invasive cancer. So, I made an appointment to see a surgeon. The journey begins…

After this all happened, I began to realize that had I not kept getting infections in the cervix, I would never have gone in to be checked, never would have decided to get a mammogram, and never would have found the calcifications. I started to see God’s hand in my life – it really was a miracle that we found the calcifications. This was the start of many miracles to come.