... And Radiation is Done!

Whew. Six weeks flew by. I am so happy to report that I am now done with radiation. As expected, I finished on July 18. Also, I no longer have any evidence of disease (referred to in the cancer world as being NED (No Evidence of Disease). Woo hoo!

So what was radiation like? It wasn't terrible but it wasn't without its side effects. It itched and burned but I know that I had it good compared to many other people who have gone through radiation. I did not have blisters or bad pain. The fatigue is for real, though. The nurse told me that most people describe it as feeling like you've hit a wall. I found this to be true. I'd be fine and then I'd be so tired I'd want to crawl into bed.

I really had very few side effects for the first 2-3 weeks of treatment but, in return, I am having them even though I am done. For example, even though I was done on Tuesday of this week, I was so tired this entire week and I could tell my mind wasn't quite right. I couldn't remember things and just didn't feel as sharp as usual. The last week of my radiation was something they call a "booster". They just do radiation on a specific area. They focused on the lower half of my breast where the majority of the tumor was located.

I felt a lot of emotions this week. I was so focused on finishing radiation that, when I was finally done, I felt a little lost. Like, what do I do now? I have a lot of work projects I need to get done and I was really scattered, not sure where to start or what to tackle first. So I decided to start by cleaning off my desk and re-doing my to-do list. It felt good to get organized. No one at work is putting this pressure on me, except me. Do I hit the diet really hard again? Do I try to go even harder at the gym? No. I'm not quite ready for that. I'm just going to take it slow and see how I feel.

I've read a lot about how finishing cancer treatment gives a lot of people anxiety. The daily grind of doctors' appointments, etc. makes cancer patients feel like they have some control over the situation. When that's gone, it's hard. I'm not sure that I feel that yet. I am still going to physical therapy. And, I still have two reconstruction surgeries to look forward to. I'll let you know how I'm feeling in a few weeks. Right now, I am just focusing on making it to the gym and work until my sister's wedding.

Megan's wedding is in Seattle on August 5. After that I see my oncologist to talk about follow up care and then I see my plastic surgeon to plot out our next steps there. My other surgeon said that her next step for me is to do a mammogram on my left breast in October/before they do a lift on it. Since I have triple negative cancer, there is no hormone therapy available to keep the cancer away. A ton of research is going into triple negative breast cancer right now so there may be new treatments discovered in the very near future or maybe I can participate in a clinical trial. I guess we'll see.

Again, thank you to all of you reading this who have sent me so much love and given me so much support. I'm very grateful.

Here's some pics.

These photos were taken July 15. I had just two more treatments left at this point. (No more radiation tattoos. Now they use permanent marker and put stickers over the top.) I thought it was really strange that I had a "burn" on top of my shoulder but my radiation oncologist said that that is where the skin folds when you place your hand on top of your head to get into position to get radiation. The radiation beam comes through your armpit.

These were taken today, July 23. My skin looks a lot better and is healing nicely.

These photos were taken from the day I completed radiation. The doctors, nurses and techs at Hoag were fantastic. Some days they let me pick the music and I went with 80s heavy metal and grunge. They said that I was the first person to request either of those genres of music.

This is my friend, Nadya. Her sisters belong to our CrossFit gym. As soon as they found out I had cancer, they put me in touch with Nadya. She was about a month a head of me in treatment. She sent me texts and flowers and was just an all-around awesome person to me through this whole ordeal.

Here are some shots from Megan and Igor's shower-bachelor-bachelorette weekend. When I look back at it, I have no idea where I found the energy to party like a slightly older rock star. I know I drank a lot of coffee. Also, it is really hot in Las Vegas. (Sorry I covered up your faces, Amanda and Susan.) Also, I think this suit covers up my uneven boobs, nicely. Couldn't get my boobs wet so I had to stay on that step.

Radiation Begins

I started radiation on Tuesday, June 6. I will do 30 total treatments. They are every week day until completed. So, as I type this I have four down, 26 to go. Factoring in the 4th of July holiday, I'll be done July 18.

So far, so good with radiation. It is pretty quick--I usually do it over my lunch hour. I can make it there and back in less than an hour. It doesn't hurt when they do it and, so far, the only side effects I've had was that my skin got a little pink. Based on everything I've read, it usually takes a week or so to start having side effects. The main side effects are fatigue and burned skin that will some times blister.

The doctors instructed me to use Miaderm cream so I put it on in the morning, right after the procedure and in the evening. I'm hopeful that this will help. I do have rather sensitive skin.

Overall, I'm feeling pretty good. I'm back at work full time and back to the gym. I can't do everything that I used to be able to do but I can get in a good workout nonetheless.

My hair is coming back. In a few weeks, I hope to look like one of those edgy hipsters with the cropped hair. My nails are growing out a bit now so I'm hopeful that I won't actually lose any nails. The worst holdover from chemo is that I have a bit or neuropathy in my fingers. I'm hoping that will go away.

I'm ready for week 2 of radiation!

Pump Up the Jam!

Following my mastectomy surgery, I had a drain in that collected the excess fluid caused by the removal of all that tissue and skin. My dear mother and saintly husband had to pour the contents of my drain into a measuring cup and record how much fluid I was draining in a 24 hour period. Truly sexy time.

When my fluid output was low enough, the drain was removed. Most of that area was numb after surgery so pulling that tube that you see out of a little hole in my skin was not bad. Thereafter I visited my plastic surgeon twice per week to have my dressings changed. And after I'd healed enough, the tissue expansion process started.

A Tissue expander -- filled

B Port

C Catheter

D Syringe

E Ribs

F Pectoralis major muscle

G Other muscles of the chest wall

http://www.breastcancer.org/treatment/surgery/reconstruction/types/implants/what-to-expect

Once per week, I went to the plastic surgeon's office and got pumped up. The first few were not bad. I just took some Valium after the procedure and I was fine. The fourth one did not go so well. It was a little painful when my doctor put in the last 20 ccs but not too bad. I drove home and ate dinner. About an hour after the procedure, the intense pain started. It ached and was accompanied by shooting pains near my armpit. I took Valium. It didn't help. I took Percocet. It hardly helped. I tried stretching based on some diagrams I found on the internet. Nothing helped. I tried to sleep but other than some restless stretches, I was in too much pain. This was worse than the mastectomy!

I had promised to speak on one of our regional underwriting calls at 8:30 am and I had a continuing legal education class that I had registered for at 10 am. (I have to report my credits this year to keep my law license so I didn't want to miss the class with my May 31 deadline looming.) So, in the morning I showered and threw some clothes on and drove to work. I could barely get the car in reverse. Stupid me and my insistence on a manual transmission. I got through my call and CLE and then I called my doctor's office. My surgeon was in surgery but they wanted me to come in so someone could look at my breast. 

The nurses that I saw insisted that the pain was normal. I kept repeating that I understood some pain was normal but that this was not normal. I said that I had a high pain tolerance. I do CrossFit for fun! I'm not a typical OC housewife. Hello. Finally one of the other plastic surgeons came to my room. He simply said that there was no reason that I needed to be in that kind of pain and that he'd take some of the liquid out. Instant relief! After that, my doctor put much less liquid in per fill and I took Valium and ibuprofen BEFORE my appointments. This meant that Seth had to drive me. Thanks again, Seth. I wrapped up the fills on May 25. I played Pump Up the Jam during the procedure to celebrate. To my delight, my plastic surgeon knew all the words. The expander sits pretty high on my chest and it is rock solid. My real breast droops. They are an odd pair. 

On May 26, I saw my radiation oncologist to get ready for radiation. I will do six weeks of radiation (30 total treatments). The targeted areas are my chest wall, underarm lymph nodes and neck lymph nodes all on my right side. The marks you see in the above picture are markings to line me up to receive radiation. It is a permanent marker covered by clear "stickers". It's not entirely clear to me whether they will place small tattoos on me to line me up in the future or if I will have these stickers for six weeks. I have my simulation on June 5 and then begin the regular treatments that will take place every week day. I should be done by about July 17. Radiation is supposed to get any cancer cells that were not killed by the chemo or removed during surgery. I'm going to operate under the premise that they already got all the cancer. This is just a cautionary measure.

I'm back to CrossFit and a normal work schedule (except I have lots of doctor appointments). I'm seeing a physical therapist to get my range of motion back in my right arm and to help me prevent lymphedema. 

I was so very happy to be able to do the CrossFit hero WOD, "Murph" on Memorial Day. One mile run, 100 pull-ups, 200 push-ups, 300 air squats, one mile run. I had to do ring rows instead of pull-ups and box push-ups instead of real ones but I legit did the air squats and running. To me, patriotism is a deeply personal thing that cannot be measured by the size of the American flag one posts on FaceBook. It is important to me to do this workout in honor of our fallen soldiers.

I know my last post seemed a bit morbid but that was an honest post; that was how I felt on those days after surgery. Cancer is hard. Everyone says to stay positive. I'm successfully positive about 90% of the time but that other 10%, when you think about your own mortality, can be pretty dark. Sometimes it's hard to pull yourself out of the darkness. It's little things, like doing Murph, that help keep me in the positive zone. Ever onward!

 

Pathology Report - Or the Post I Didn't Want to Write

I've been meaning to write this post since my surgery. But I just couldn't bring myself to do it.

My focus throughout chemo was to have a complete pathologic response to chemo. Every article I read quoted statistics about how much better your chances of survival are if the chemo kills all of your cancer. When I got my MRI results that all the cancer was gone, I cried. It was my goal. I had done it. I would live.

And then I had my mastectomy and sentinel node biopsy. The surgeon checks for cancer cells in your sentinel lymph node during surgery (which, in my case they could identify by the marker left during the biopsy and from the blue dye (technetium sulfur) that is injected in your breast before surgery). Mine came back with cancer cells. So they took out nine more for a total of 10 lymph nodes. One contained a micrometastasis and one had a 1.2 cm metastatic carcinoma. Micro metastasis is a very tiny amount of cancer--like 500 cells. None of the other eight had any cancer cells.

I then had the skin sparing mastectomy. The pathology on the breast tissue and skin that was removed showed that there was still cancer in my breast as well. The largest remaining tumor was 3.3 cm. Tumor histologic type: Invasive carcinoma with clear cell (glycogen rich) features. Triple negative. Grade 3.

Hearing this news was devastating. I cried a lot. I knew some of this when I left the hospital but I had to wait a few days to get the surgical pathology report. When my surgeon, Dr. Coleman, called to discuss it, I told her that I couldn't stop crying and was upset. She told me to put the report in a drawer and not look at it again. She said that they had gotten good margins and I needed to move forward. She said that I needed to put cancer behind me. She explained that my tumors had not shrunk like a deflated basketball but rather like a spider web. So, I didn't have a 3.3 cm tumor like a basketball but rather just some strands that where dying. She said that the chemo HAD worked, just not as well as we thought.

Now, keep in mind that my various scans and MRIs that I had prior to chemo showed "extensive disease present involving the lower inner quadrant, lower outer quadrant and extended from the 5 o'clock position of the right breast to the 12 o'clock. The tumor measured 10 x 6 x 6.8 cm." The PET CT scan showed "at least 3 discrete hypermetabolic lesions in the right breast and 3 discrete hypermetabolic axillary lymph nodes." I was in bad shape. And I DID have a good response to chemo. But not the one I wanted nor the one that I thought I had achieved.

A few weeks after my mastectomy, I saw my oncologist. He thought I had a great response, too. I told him I was devastated.

And every time I thought about putting this in writing for the blog, I started to cry or I started to panic.

But here it is. I finally did it. I'm not crying or panicking (very much).

Whisper of concern

*Cancer*

I was in the break room the other day and a woman who works in a different department but I see around in the break room and bathroom approaches me. She looks at me, smiles and asks, "can I ask you a personal question?"

Me: Sure. 

Co-worker:  Is it [in loud stage whisper] cancer or alopecia?

Me: Stunned blank stare. Awkward silence.

Me: Cancer.

Co-worker: What kind of [whisper] cancer do you have?

Me: Ummm, breast. 

Co-worker: Well, good luck to you.

Where is the puking receptacle?

The night in the hospital was not a big deal. The only thing I found odd was that they put compression socks on me that are hooked up to this machine so they inflate and deflate all night. And every time I had to go to the bathroom, they had to come and unhook me from the socks. It makes sleep difficult but no blood clots is a good thing.

I had a catheter during surgery that they took out after I came to. Again, no one told me about this. I kept asking to go pee but they told me I didn't really have to go, it was just the catheter. Well, why wouldn't they let me try to go before they took it out then? Granted, these were thoughts I was having when I was high as a kite.

I was so thirsty when I got to my room, I chugged whatever they'd give me. And for whatever reason, in addition to water, I got cranberry juice. It took me forever to actually be able to go to the bathroom. I think I fell asleep sitting on the toilet a few times (super glamorous). The weird thing is that I puked. (This is my third surgery and the first time I puked. And with the other ones, I drank Diet Coke when I woke up.) And it was like no one was prepared for this at all. I was laying in bed and I asked my Mom and Seth to get me something to puke in and there was nothing. The feeling sort of passed and then I got up to use the bathroom and then I threw up in that garbage can in the bathroom that weighed like 15 pounds. (Think sitting on toilet, garbage can in lap.) Thank god I do CrossFit. But I still couldn't pee.

Later in the middle of the night, I was trying to pee again and I told the nurse that it made me nervous that she kept checking on me while I was trying to pee. So she left the room for a while. And I finally peed (!!!!!) and then stood up and puked. And then I puked again but the nurse was gone (because I asked her to leave), so then I started sobbing and saying "help, help, help" because I wanted to sit down because I thought I was going to pass out but I couldn't lift the garbage can to bring with me to my bed. What happened to those little plastic trays? I swear I played with my Mom's from her gallbladder surgery. The nurse came back and we got things under control. She was very excited that I had peed.

My initial reaction after surgery was that it was so much easier than chemo; that it was not a big deal. Also, there seemed to be way more of my boob left than I was expecting that didn't seem shocking either. I remember thinking, wow, this isn't a big deal at all. I am made of steel. I felt really good and actually happy. I wasn't even mad about the drain. More on that later.

(Hope that second picture below isn't too much for you, dear reader.)

None of this feeling of invincibility would last, however. 

The Big Day

Wednesday, March 22 ... surgery day was finally here. I had to keep reminding myself to not eat or drink anything when I woke up. I was super thirsty. I did wake up at 11:30 pm the night before and take one last sip of water. I took what would be my last shower for a few weeks, I packed up my overnight bag and then we headed to Newport Beach.

My surgery was at Hoag Hospital in Newport Beach, which has to be one of the more beautiful locations for a hospital. (More on that later.) I checked in at the main registration desk at 8 am and then checked in at the second registration desk at 8:10 and then got to chill in my very first waiting room of the day.

The first things that they do to mastectomy/lumpectomy patients on the day of surgery is something called wiring and marking. I decided to not read up on these things as I heard that they hurt a lot. A friend told me that the wiring hurt so much she passed out. When they do the biopsy, they inject markers so that they know where they took the tissue samples. With wiring, they stick a thin piece of wire through the tissue where the marker is located. I only had to do the one in my lymph node since they were going to cut off my entire boob. They shot me full of lidocaine so the wiring was not all that painful. The shot of lidocaine is not super pleasant but not bad. And then I just had a piece of wire sticking out of my armpit that they later taped down so I wouldn't stab myself. They warned me that the marking would be more painful. This procedure is where they inject your breast with blue dye so that they can see how it moves from your breast to your lymph nodes. The idea is that this is how the cancer would travel, too. It hurt but it only lasted about 20 seconds per shot (2 shots) and I just said "ouch, ouch, ouch, ouch, ouch" while they did it. This made it easier to get through. On the scale of things that I say, "ouch" is pretty tame.

The doctor who did the wiring and marking said that he saw my MRIs and he said that I had the most miraculous reaction to chemo that he had ever seen. That made me feel really happy.

And then I had to have a mammogram. I had no idea about this part. I guess they had to make sure that the wiring and everything was done right. I have no idea. Another uncomfortable procedure but it was over pretty quickly. But just imagine for a minute having a mammogram with a wire sticking out of your arm pit as a tech tries to get your breast smashed into the machine at just the right angle.

After that they took me upstairs to a pre-op floor/room. They kept insisting that Seth and my Mom couldn't come and sit with me so I went rogue and took off and went to the waiting room in that lovely green gown that you see below. I guess I wasn't supposed to do that ...

Here I am waiting for something to happen.

The pre-op people are very nice but have to ask about bowel movements more than I think is healthy. Also, you have to prove that you are not pregnant so good luck peeing when you haven't had anything to drink in 12+ hours. I spoke with my surgeon and then the anesthesiologist and then we were ready to get it done. 

Below is after I got the initial "relaxer" (or, as the anesthesiologist called it, the margarita). I felt as high as I look. And then I was out. 

I came out of surgery in a little pain, they gave me that device where you hit the button and morphine comes out every 10 minutes and then they wheeled me to my room. Oh, but not before I begged for every ice chip they would give me.

This was the view out of my window. Not kidding. (Yes, that's the ocean.)