... 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.)

Surgery Prep

With just a few days before surgery, I tried to get prepared. I cleaned the apartment and did all of the laundry. For reasons, I don't understand, I redecorated my bathroom in a Bora Bora tiki hut theme. When you feel that your life is completely out of your control, Amazon provides comfort. Seth took the picture below that we had blown up. We were on the other side of the coral reef fishing when we took the photo. I was super sea sick at the time.  I found the "hand crafted" masks on Amazon. There's two others that I hung on a different wall. They look kind of mean in the photo but they are actually kind of happy looking.

The hospital said I would need a robe so I bought one of those on Amazon, too. (Pro tip: You don't need one. If you really care if someone sees your ass after repeatedly discussing bowel movements, and palpitating your breasts you have bigger problems that a robe will not solve.)

I digress. On the day before surgery (March 21), my gym did a special Rachel's WOD. These are my favorite movements although someone inserted wall balls into the workout. Rachel does not love wall balls. That farmer's carry was no joke. When I started the carry, I started reflecting on my journey with cancer (barf that I called it a journey) and then my forearms started to burn and I thought, screw cancer, I gotta get moving or my arms are going to fall off.

 I don't think I can adequately put into words how much it meant to me that OCCF did a special WOD for me and that a lot of people showed up at 6 am just to workout with me. (6 am is really damn early!) So much love to my OCCF family. The best people! (For some reason, I look like I am the only one who sweated. People have promised that this was not true. I am not sure. But I wanted to wear the Wonder Woman shirt and it is cotton and shows lots of sweat.)

I'm going to be honest, though. On this day, I was starting to get so pissed about having to have my boob cut off. I could not wrap my head around the fact that I would go to "sleep" and wake up with only one boob. Chemo is awful but at least your body parts are in tact. I wasn't quite sure how to deal with my anger because everyone always compliments you on being positive and stuff. I DID NOT FEEL POSITIVE. I felt like this was utter bullshit. See those dumbbells in my hands, I wanted to throw those through a window or something that would make a loud crashing noise.

But there was literally nothing I could do about it so I had a light dinner and didn't eat or drink anything after midnight and got myself ready for an 8 am check-in at the hospital.

Boob Envy

Sorry it's been a while since I last updated the blog. I've been working through a lot of difficult feelings. Sometimes it's cathartic to write them down, sometimes it's hard to re-live them. These have been hard to get through. I am surprised by the thin line between crying and wanting to punch someone in the throat.

17.4
On March 17, we did CrossFit workout 17.4. It was actually a workout we did last year. (It's pretty common to re-test workouts in CF.) It also happened to be the workout that I did the best at last year. I even beat Seth. 55 deadlifts at 155# and then 55 wall balls (14# wall balls to a 9-foot target), 55 calories row and 55 hand stand push ups. Do as many as you can in 13 minutes. Last year, I almost finished the rowing. This year, I only got to 36 wall balls. I was pretty proud that I got through the deadlifts since I haven't deadlifted a lot since cancer. Although I'm proud, I am bummed about my backslide from last year. There were times when I thought that I should do the workout again and push harder but my body hurt too much from the deadlifts. My poor hamstrings. Ouch. Ouch. Ouch.

Pre-Op Massage
On Saturday, March 18, I decided to use a gift certificate I had to a spa since it would probably be a while before I can do anything like a massage, etc... after surgery. The gift certificate was for a Korean spa. In addition to the individual services, they also have common areas with whirl pools and saunas and stuff that you can use.

I got to my appointment 30 minutes early to soak in the tubs and I stared at every one's boobs. And I thought about how I will never have a right boob again. Maybe the reconstruction will be really good and no one will notice but maybe not. Maybe I will feel weird and deformed for the rest of my life. So I sat in the whirlpool and cried and looked at boobs. No one noticed since it was 900 degrees in the tub and it just looks like you are sweating. Plus, I have no hair so I probably looked creepy anyway.

Sitting there in the tub, I had boob envy. Getting through chemo had been such a goal, I hadn't really taken any time to think about the mastectomy. And now that I was thinking about it, I was pissed. And really sad.

The Struggle to Feel Normal

My mind is ready, even if my body is not.

I am so ready to feel good, to have a normal work week, to have a normal week of workouts. I'm just not quite there yet.

I'm having a heck of a time recovering from that last round of chemo. Part of it is the endless hot flashes and night sweats--it's hard to feel good when you're not sleeping. So many effing side effects. All I can think is what's next?

CrossFit 17.1 (first workout of the CrossFit Open)
I had my last chemo treatment on a Tuesday and I had until Monday to put in a score for the first workout of the CrossFit Open. I decided to do the workout on Sunday, five days after chemo. I did not feel particularly good before the workout but I didn't think I'd be a whole lot better on Monday. For those not in the CF cult, there are five workouts total. Each Thursday, the workout is announced and then you have until Monday to enter a score. For the top athletes and teams, this is how you get to regionals and then "the Games". The Games is what you see on ESPN. Obviously, the vast majority of the people who enter the open never make it to the next round so doing the open is a personal thing. I have no illusions of being anything other than 5,000,000th in the world--unless they come up with a category for people with cancer who are undergoing chemotherapy. Then I feel like I might be able to crack the top 100.

The 17.1 workout consisted of 35# dumbbell snatches and burpee box jump-overs. I am afraid of box jumps. When I started CF, I did jumps onto a 16-inch box. Since a few spectacular falls, I have always done step-ups onto a 20-inch box. (Jumps are two feet leaving the ground at the same time and landing on top of the box. Jump overs are that you have to jump down on the other side of the box. Normally you could just jump or step down to the place where you jumped from. Step overs are stepping onto the box with one foot. Here, we had to do a burpee and then jump onto the box with two feet and then jump or step down to the other side of the box.) On days where we have to do max-height box jumps, I have jumped onto a 20-inch box approximately 5 times in 2+ years. So, of course, I think, I'll do the 20-inch box jumps for this workout because those five that I have done are proof that I can. The workout is 10 snatches/15 burpee box jump-overs. Then 20/15, 30/15, 40/15, 50/15. There is a 20-minute time cap. (THANK GOD!) My gym got some soft boxes (normally they are wooden and ready to destroy your shins) that made my attempt at this workout possible.

This was one of the harder things I have done in my life. I was huffing and puffing after the first 10 snatches. And then I couldn't quite get my feet and legs that felt like they were made of lead onto the top of that box. But I kept trying. And I finally got it down. But I was so winded, I could only do five at a time. And when I say winded, I mean, I felt like I had just done 10 wind sprints on a full stomach. I got 66 reps in the 20 minutes I was allowed for the workout. And then I laid on the ground and sobbed. Ugly cried. Whatever. I did it.

17.2 
This workout consisted of front rack dumbbell lunges (#35 in each hand), toes to bar, dumbbell power cleans--and, if you got far enough in the workout, bar muscle-ups.

I couldn't get even one toes-to-bar. I was just starting to get them again right before cancer. Oh well ...  more concerning to me was the fact that I was not bouncing back from the chemo. I felt OK the weekend in LA but I felt like crap most of the week. The hot flashes and night sweats were bad. I'd like to sleep without waking up in sweaty sheets.

17.3
Between today and February 26, I have gained 10.5 pounds. Hmmm ... I wonder why.

Why can't I feel normal? Why can't I feel good? Why???

On Friday, I did the 17.3 workout. The "RX" or regular version requires chest to bar pull-ups which I cannot do. So the "scaled" version is jumping regular pull-ups and snatches. This version allowed me to do a power snatch and then an overhead squat.

This was my feet afterward. My ankles were spilling out the sides of my shoes.

I try not to think about what I could have done if not for cancer but sometimes I do think about it.

I have a week and a half until surgery. Hopefully things will take a turn for the better. In the meantime, I am going to get in every workout I can.

A Picture is Worth a Thousand Words

Getting Ready for Surgery: the Pre-op Visits

I met with my surgeon, Dr. Coleman, on March 2 and my plastic surgeon, Dr. Zetrenne, on March 7.  I had blood drawn on Thursday, March 9, so barring some really crappy numbers for my blood counts (that cannot be rectified prior to surgery), surgery is a go for March 22.

I was told from my initial diagnosis that a lumpectomy was not an option. Thus, even though I had what appears to be a complete response to the chemo, I will still need to have a mastectomy. As I mentioned before, I have decided to do a single mastectomy. They would do a double mastectomy if I wanted to do one. A lot of women are choosing a prophylactic double mastectomy. I understand why someone would make this choice. Sometimes I think I am crazy for not doing the same. But my decision came down to a) statistically my cancer is more likely to come back somewhere else in my body as opposed to in my left breast; b) after all that my body has been through (and will have to continue to go through), I wanted as easy a recovery as possible; c) I can't imagine not having at least one "real" boob for the rest of my life.

On that last point, people ask me how I'm feeling about surgery. I'm nervous about it but anxious to get it over with. I am having a difficult time wrapping my head around the thought of waking up from surgery and not having a right breast. Honestly, I think it is better to not think about it and just deal with it after it is a reality.

Because of my response to the chemo, Dr. Coleman discussed with me the possibility of a nipple sparring surgery. But she took one look at my boob and said, you know, when they do the surgery they are going to lift your breast and I think that the nipple will be in the wrong spot. This is a kind way of saying, your breast are too saggy for that nipple to be of any use. Dr. Zetrenne very matter-of-factly just said no to saving the nipple. (On a side note, if you'd have told me six months ago if I'd be writing about my nipples in a blog, I'd have wondered what had gone so wrong in my life.)

The one open question at this point is radiation. Dr. Coleman said that even though I had what appears to be a complete response to chemo (this will need to be confirmed when they test my tissue and nodes from surgery), the standard of care is to do radiation. In many cases, radiation would only be necessary if I had a lumpectomy. But, because of the extent of my cancer and that it was in my lymph nodes, radiation is recommended. This is compounded by the fact that I have triple negative cancer. We will know more after surgery. I do have the option to opt out of radiation if they determine all the cancer is gone. (I mean, I always have the option of opting out of particular treatments. No one makes you do chemo or have surgery.) I mean that I have the "safe" option of opting out.

To celebrate the good news of my response to chemo, Seth and I went to LA for the weekend. We stayed with some friends and went to the Broad Museum and then to a nice dinner at 71Above.

One of my favorite Jeff Koons works because it's sort of creepy and weird.

After one hot flash at the restaurant, I ripped my hat off and went bald for the night. Liberating.

YES! Some Really Awesome News!

Yesterday (February 24), I had an MRI on my breasts to assess my response to the chemotherapy.

I am so happy to report the following.

Right breast findings: No suspicious mass or nonmass enhancement. Specifically, no significant residual enhancement is seen at the extensive sites of previously noted abnormality involving multiple quadrants.

Right lymph nodes: No suspicious axillary or internal mammary lymphadenopathy.

Conclusion: No significant residual abnormal breast enhancement or enlarged lymph nodes, compatible with complete imaging response to neoadjuvant chemotherapy.  

Yes, yes, yes!

The MRI showed that I had what is known as a pathologic complete response (pCR) to chemotherapy. (When I have my mastectomy, they will test the tissue that they remove to confirm this fact.) This is a huge thing for someone with triple negative breast cancer. Patients who achieve a pathologic complete response with neoadjuvant therapy tend to have a good prognosis. That is, patients who have pCR are at a much lower risk for subsequent distant disease recurrence. Some studies have found that in cases of aggressive breast cancer, like triple negative, that the benefit is as high as 75%/ one-quarter of the risk of recurrence compared with patients who did not achieve a pathologic complete response.

I have appointments in the upcoming weeks with my surgeon and plastic surgeon. My mastectomy is scheduled for March 22. I am not yet sure what, if anything, the pCR means for my treatment plan. I should know more in the upcoming week.

While I wait, I am simply going to bask in this good news. Good news helps with nausea. It's a scientific fact.

Chemo Round 6 ... Last One!

Since I started chemotherapy in November, I have had the date February 21, 2017 circled on my calendar. February 21 would be the day of my last chemotherapy. Just hang in there until February 21, I would think.

I am happy to report, I made it! (Kitty is still hanging in there. :-) )

Love my nurses! 

I'm at a little bit of a loss as to what to say. It is now a few days after the chemo. I still feel sick to my stomach a bit and a little dizzy. But I also feel awesome. To not have to mentally prepare for another round of chemo right now is the most amazing feeling. Thank you to the wonderful staff at UCLA Hematology and Oncology for taking such good care of me. What a wonderful, compassionate group of people.

The after effects of chemo can linger for years. I'm hopeful that all of my side effects will go away. Also, I'm ready for hair again. It's been nice to not have to shave but I'll gladly take that on again for a thick head of hair.

Know what I DO have to prepare for? The CrossFit Open!!! I'm going to attempt the 17.1 workout tomorrow. Dumbbell snatches and burpee box jumps here I come.

 Coach Marie and me before my last round of chemo. 

Seth loves these types of photo opportunities. 

I've still got it. Right?

Slay ... Jon Snow

My Mom had breast cancer. She found a lump when she was 55. She went through a lumpectomy, chemo and radiation. I'm very happy to say that the cancer has not come back.

I'm not really much for support groups so being able to discuss cancer stuff with my Mom has helped immeasurably. One of the things that she told me was that it was helpful to her to visualize the chemo as a small army of soldiers killing the cancer cells.

People who go through chemo are tough as hell mentally. Yes, chemo is absolutely awful physically. There is pain and nausea and awful physical side effects. But mentally, it is a beast. As a chemo patient, you have to walk into a clinic and let someone put an IV filled with chemicals into you, when you know ... you know ... how awful it is going to make you feel. And, not only do you do it, you do it gladly and with a smile on your face because you know that it is your best chance to live.  

So, yes, visualizing tiny soldiers killing cancer cells is one thing that helps when you are so dizzy you can't sit up or you feel so nauseous that you can't imagine eating again.

At one point during all of this, I decided that if I was going to think about soldiers killing my cancer cells, it was going to be my ultimate solider.

Slay that cancer, Jon Snow.

44 and F$$$ing Fabulous!

Yep, that's a gun filled with tequila. 

I love to throw parties--especially birthday parties--so I didn't let the cancer stop me from my 44 and fucking fabulous birthday party. I had a lot to celebrate, including having some of the best friends and co-workers anyone could ask for. I had such a great time. Also, I had three birthday cakes.

Just another reminder to not wait until cancer or something awful comes along to live life to the fullest. Throw yourself a party! I highly recommend it.

My dear Macalester friends, Dianna, Jake and Maia made it to the OC for the party. Thank you!!

  Also, thank you to Tim and Willow for the sweet Duke sweatshirt.

Chemo Round 5 and More Fun with Insurance

Best shirt ever.

I had my fifth round of chemo on Monday, January 30. It was similar to the other rounds but they gave me some additional anti-nausea medication since I was pretty nauseous after the last round. Dr. Coluzzi didn't do an exam this time so no new news on the tumors. He said he would do one before my last round of chemo. I feel like my tumors are continuing to shrink but I guess the MRI I get after the next round will be the real judge.

This round made me so tired. I slept most of the day on Wednesday. On Thursday I worked and I definitely did not feel very well. I left at 3 and was asleep on the lazy boy by 3:30. I slept until 5 when I woke up and ate dinner. I think I was awake until 7, when I went to bed and slept until 6 am. Other than the sleeping, I'd say that I am having most of the same side effects as last round but they are a little worse. As I've been told, chemo has a cumulative effect.

The effexor has not been effective in helping with the hot flashes and night sweats. Dr. Coluzzi doubled my dose to see if that would help. I'm writing this about five days after doubling the dose and if anything, the hot flashes are worse. I'm not sure what can be done at this point. Dr. Coluzzi said I had about a 50-50 chance of ever having a period again. They'll eventually go away, right? Eventually?

I walked on Tuesday and Wednesday. I try to do two laps around the perimeter of our apartment complex (1 lap = 1 mile) and then I walk across the street to get coffee or something to eat. It's probably about three miles total. I walked a small amount on Thursday and Friday. On Saturday morning, I went to CrossFit. I kept getting light headed so I took it very easy. I would run 200 m and then I would rest a bit and then jump rope. Box step-ups, rest, push ups, rest, dumbbell clusters, rest. Goblet squats, rest. Dumbbell snatches, rest. Done. I'm hoping to be able to do a little more in the coming week but I'll listen to my body and see where I'm at. I feel much more wiped out than I have with the other rounds.

The CrossFit open is coming up. Seth is encouraging me to enter. The open is five workouts; one is done each week. It is announced on Thursday and then you have until Monday to do the workout and post a score. It is the start of the competition that you see on ESPN. Everyone starts with the open. I did it last year. The problem with this year is that the first workout is three days after my last chemo and the last workout is after I have my mastectomy. It's not a big deal if I can't do it or take a no score for a workout so I probably will register.

Insurance
Things had taken a turn for the worst regarding insurance between rounds 4 and 5 of chemo. My plea to have Dr. Z, my plastic surgeon, accepted by my insurance was denied. (My appeal was based on the high-risk nature of my surgery and the lack of a qualified professional to do it within 30 miles of my home.) Apparently they found one other doctor in Orange in a completely different hospital system who does the surgery I need. Then Aetna came back and said that Dr. Lin, my radiation oncologist, was also out of network. This was after saying that they thought he was in network and me going to an appointment with him.

I pleaded with my nurse navigator/case manager at Aetna. She said she would take it to her supervisor but I had no confidence anything would happen. So I called my benefits person at my company. I can't say what I hoped to accomplish when I called her but I was so frustrated at that point, I think I just needed to vent. WHY IS THIS SO HARD??

In law school, when they teach you how to write a brief or try a case, they insist that you come up with your "theory of the case." This is the story you tell and the theme around which you make your arguments. At some point during my call with my benefits person, I came up with my theory of the case. To successfully navigate cancer treatment, I have to have four different doctors. Aetna and my company cannot expect me to be getting the best care if they insist I use doctors who do not work in the same hospital system or have an effective way to communicate. Also, the benefits person began to see that I need to focus on fighting cancer, not fighting Aetna. She was worried that I was too stressed out. (I may have said something like, what's $5,000 when you're talking about dying?) So, the benefits person decided that she would take care of business. Within 24 hours, she had gotten Dr. Lin and Dr. Z to agree to be "in-network" through July. Seriously. Less than 24 hours later. This doesn't solve all of my problems as Dr. Z will need to do work after July but it will get me through radiation. To say that this is a relief is a very serious understatement.

Thanks again to everyone for all your love and support!

Chemo Round 4/Insurance Update

How can I be cold when my face is so red ... welcome to chemo.

Two-Thirds Done
On Monday I had my fourth round of chemo. I had a feeling that this round would be a little tougher than the last one since I actually felt pretty good after round three. I was correct. This round I felt more nauseous than in the others. This is a thing that seems to be building with each round. I take the anti-nausea meds but I still feel pretty sick to my stomach. This finally seemed to start getting better on Saturday night. I guess if I had to describe how I am feeling, it would be tired, sore, nauseous and run down. It's like having a flu that you can't quite get over. I would usually be on the up-swing by now (one week after chemo) but I am not feeling the bounce back yet.

I have been having terrible hot flashes/night sweats since the last round. I wake up every hour or so feeling like I am on fire. And the sweat--it's everywhere. My knees even sweat. One night I sweated through my pillow. As you can see in the above photo, my face is bright red. My oncologist prescribed Effexor to help with the hot flashes. Aetna refused to cover it initially and my doctor had to file some additional appeal paperwork to get it to go through. So, I didn't get the Effexor until Thursday after it was prescribed on Monday. I started it on Friday. So far, I'm still having hot flashes and haven't noticed an improvement.

I have a confession to make. I am starting to gross myself out. After the chemo, I can smell the chemicals on me--in my sweat, my urine--just everywhere. I can't shower it away. I can't get the stench of chemo off me. Chemo makes you feel so disconnected from your physical body. You lose all of your hair and look like an alien. The chemo and assorted drugs mess with your head so you can't remember things or think like you used to. And then all of the side effects make you feel so sick and unlike your normal self. Right now, it feels like I am sort of floating through a life I used to have.

This is becoming a test of my mental strength. I cry when I think that I have to do this two more times. And then I start to think, what if the cancer comes back? What if I have to do chemo again? The only thing to do is focus on the next two weeks that I have before the next round. I just repeat over and over: I'll bounce back. I'll be ready again.

Obligatory swimsuit photo. This is after Round 4. My tummy hurts.

Insurance
In my last post, I mentioned that I was having a number of issues with my insurance coverage and with scheduling an MRI. The MRI is now scheduled for the Friday after I finish chemo. My surgeon's scheduler called and made the appointment and the MRI scheduler who I spoke with is allegedly being "spoken to" about scheduling appointments with chemo patients.

I emailed HR/Benefits at my company and they are looking into the issues that I had with Aetna last week. I think that they are concerned with the customer service aspect but they are also looking into the Hoag/in-network issues. I got an update on Friday (a week after I had my issues) and they said that they are still looking into it. I'm moving forward as if Hoag is in network. I have a consultation with my radiation oncologist tomorrow.

I ran the four plastic surgeons that are in-network in my area by my surgeon, Dr. Coleman. Dr. Coleman indicated that these surgeons were probably not up for a "high-risk" person such as me who needs to have breast reconstruction after radiation. As such, I decided to go with Dr. Zetrenne even though she is out-of-network. I am going to petition Aetna since they said that they may cover her if there were no in-network surgeons within a 30-mile radius who do this type of surgery. I'm sure this will be an exercise that drives me nuts but it is worth a shot. I like to believe that I am a persuasive person.

Surgery Game Plan
After having met with Dr. Coleman and Dr. Zetrenne, I have a game plan for my surgeries. Yes, surgeries. I have learned that I will likely have to have three. Unless the MRI reveals that the cancer has spread into my left breast (which I have no reason to believe that it has), I am going to have a single mastectomy. There is some risk that the cancer could come back in my left breast but at this point, I don't want to cut off that breast if I don't have to. Triple negative cancer is much more likely to come back in my bones, lungs or brain. Super, I know. Due to my extensive tumors, there is no way that they can save my right breast or nipple, even if the tumors shrink a lot (which they are doing). Thus, on March 22, I will have a mastectomy. At that time, I will have a tissue expander put it my breast. Dr. Zetrenne will slowly fill it with fluid so that there is skin available for reconstruction. Beginning in May, I will start radiation. Radiation is every week day for 4-6 weeks. When radiation is done, I have to let my skin heal for six months. So, reconstruction surgery is planned for December.  Dr. Zetrenne said that I do not have enough excess skin/fat on my stomach so she plans to use skin from my back to make a new breast. (Thank you CrossFit and IIFMM, I guess?!?) Once that is done, the third surgery would be to make my breasts symmetrical. I'm calling this my Perky Boobs 2018 plan.

Thank you
Once again, I want to say thank you to my amazing friends and family. I cannot express how much it means to me to receive all of your love, thoughts, texts, emails, gifts, cards, well wishes, etc.

Even though I didn't feel the greatest, I got back to CrossFit on Saturday and on Sunday, I went on a four-mile hike. Nature and fresh air made a big difference ... not to mention the Green Bay Packers.

View from my hike.

Not a Warrior today ... but I will be tomorrow

This past week should have been cause for optimism and perhaps even happiness. I met with my surgeon, Dr. Coleman, to assess my progress and plan the next steps. But that meant that I had to think about the big picture. Not only did this force me to think about how far I have left to go, it meant that I had to deal with my health insurance company. Let's just say that Friday night ended with me eating a bag of potato chips and yelling at Seth.

[This is long but it felt good to write.]

But first, chemo and side effects update
This is my third week since my last chemo (which I had on December 19). So, in theory, this should be the week where I feel the best. But this round of chemo has been a little backward. I felt pretty good after chemo compared to the first two rounds. Less pain. Way less chemo brain and dizziness. I had a great Christmas. I felt a bit more winded than usual at CrossFit but I expected that to happen. But on the Friday, during week 2 after chemo (December 30), I experienced some intense chest pains. The day before, I hadn't eaten as healthy as I should have. I had an In n' Out burger for lunch and went out for dinner (salad and flat bread pizza). That night, I woke up in pain. I couldn't tell what it was--my chest, upper stomach, upper and lower back all hurt. I have also had hot flashes every night during this round so I kind of dozed in and out of the hot flashes and pain. I thought I had indigestion. I woke up in the morning and felt OK. I went to CrossFit and worked out with no problems.

Later that morning, I was sitting in the conference room for a work meeting. I had a portion in the beginning of the meeting where I was the main speaker. That went fine. About 20 minutes in, I started to get the most intense pain--chest, back, stomach, shoulder blades. I could hardly breathe it hurt so bad. I have no idea why, but I refused to excuse myself from the meeting. I guess it was because I didn't want my bosses to see me sick. I only wanted them to see me strong and kicking cancer's ass. So I sat there, sweating, turning white, gasping (although it must not have been audible). After 15 minutes, the pain started to come and go so I would have a few minutes with a dull ache before it became intense again.

The first meeting ended and every one agreed to a small break before we started the next. I went to the bathroom, locked myself in the handicap stall and laid on the floor. I was terrified. Was it just a side effect of chemo? Was I dying? Was something rupturing?

I went back to my office and then my boss's boss stopped by my office to let me know that the next meeting would just be three of us in his office. I got through the next 30 minutes and then called my oncologist. The office was closed.

So I did what any, 43-year-old would do. I called my Mom.

She has gone through chemo and said she did not have this happen to her but she also did not have Neulasta. She encouraged me to try to reach someone from my oncologist's office.

I called my oncologist's office and pushed the button for urgent matters. I got through to an answering service which, in turn, left a message for the on-call oncologist, who was not my oncologist. He called me back within 10 minutes. After we discussed my pain, he said that he thought I was reacting to the Neaulasta. He said that Neulasta causes bone pain and mine was now in the my sternum. During the second round, I had stopped Claritin after the first week with no issues. He told me to take it again and then to call him the next day with an update (even if I was feeling great). He said that lots of people end up in the ER because they think that they are having a heart attack but it's just Neulasta pain. Claritin is the non-medical, every-cancer-patient-knows way to counteract the bone pain caused by Neulasta.

I got home at 4:30 that day and took a Claritin. I had one more major attack about 4 hours later. This time I could lay on the lazy boy and moan. When the worst of it passed, I took a vicidon and went to bed. The next day, I just had a dull ache. I kept taking the Claritin. I had no more flare-ups. Hope that's all it is. Now, can these hot flashes stop!

My Meltdown
I saw my surgeon on Thursday (January 5). She did a manual breast exam and said that she could tell that the tumors were shrinking. She couldn't feel any lumps in my lymph nodes. She can still feel the lump that I found but said it was smaller. We still have some shrinking to do, tumors! She did say that  the difference between this exam and the one I had before chemo was "night and day." Super exciting, right?

She mapped out what would happen post-chemo: 1) Breast MRI to see how tumors look followed by an exam with her; 2) surgery; 3) radiation; 4) (3-6 months later) reconstruction. I told her that I was leaning toward just having a mastectomy on my right side if there was no cancer in the left side. Statistically, my kind of cancer is much more likely to come back in my bones, brain or lungs rather than the other breast and I'd rather spare myself the extra pain and recovery of removing a second breast. She supported this decision. I did not realize that I would have to wait so long for reconstruction, though. I guess they put something called an expander in after the mastectomy to prepare you for reconstruction. I have read that at best, it is uncomfortable, and at worst, painful. Three to six months with this sounds delightful.

I actually like to run but you get the picture. 

I started Friday with all this on my mind. I thought I would make a few quick calls to set up appointments and I would check with Aetna to see if the recommended doctors for radiation and surgery were in network. WRONG.

Dr. Coleman had said that she wasn't sure that the plastic surgeon she wanted me to see would be in network. But she wanted me to have a consult before we scheduled surgery. I checked, she wasn't. But when I first tried to find one that was, I couldn't get any options on the "Find a Doctor'"  benefits website. Then I got a list of about 100 names. So I called Aetna member services. I asked if there was a way to narrow the list to those who specialize in breast reconstruction after mastectomy. I was told I had to call every doctor on the list. After fighting with the rep for a while, she brought a nurse in who super condescendingly said "if it were me, I would want to call and make sure I had an expert and the right person doing my surgery." No shit, if I had 5 people to call. But 100? She told me that I could appeal and try to get the recommended doctor to be covered. So I asked what the criteria to overturn was and she said if there's someone else in your network that can do this surgery within 30 miles, you will be denied. But you can appeal that, too, she said. And what would overturn this decision? If there wasn't a doctor within 30 miles.

And then the rep said that she would stay on the line with me and we could call a few. I declined and hung up. Sigh.

I then checked the recommended radiation oncologist. I couldn't even find this person on our website in or out of network. So I called Dr. Coleman's office. Waited on hold. Ended up leaving a message. The nurse who called back said that the radiation oncologist was in network and that they only refer to this facility. So I called the radiation oncologist's office and they said that they would call and talk to Aetna. Aetna told them that they were now out of network. Ocologist's office gave me their tax ID number and told me that I should call and ask again.

So, I called Aetna again. I asked about the oncologist and the facility that they bill out of and provided the tax ID number.  Out of network. In fact, the rep told me that my employer had selected a crappier insurance for us that greatly narrowed our network in 2017 and now all of the Hoag system is out of network. Hoag is one of the largest hospital networks here. I had my mammogram, biopsy, MRI, pet scan, genetic testing done there. Oh, and my surgeon is part of Hoag. I freaked out. I asked if I was grandfathered in because I started treatment last year. Nope. I started sobbing. Like really sobbing into the phone at this point. The rep then put me on hold so she could double check. 15 minutes later she came back and said she confirmed it's all out of network.

I checked the website and said that that didn't make any sense since my surgeon is still showing as being in network and Hoag Hospital is showing as in network. She put me back on hold for 30 minutes. She returned and said that she and her supervisor both submitted mock claims for me and that Hoag is in network and that I can see the recommended radiation oncologist. She said it was a glitch in their system. She said that she was documenting everything in case they claim that these are out of network later. Super comforting.

She, unlike the first rep, however, was able to give me a list of FOUR in-network breast reconstruction plastic surgeons from the larger list. She was appalled that the first rep told me to call everyone on the first list.

I had one more call to make. All I had to do was schedule a breast MRI for one of the four days that my surgeon said I needed to have it on. OH BOY ...

Scheduler: what was the date of your last period?
Me: Um, a few months ago but I'm going through chemo so it's stopped.
Scheduler: Ok, call me back when you get your period. The MRI has to be 5-12 days after the start of your period.
Me: But it's not going to come back until after I need the MRI.
Scheduler: It HAS to be in the 5-12 day range.
Me: But I saw my surgeon yesterday and she wants me to do it during this particular week.
Scheduler: You need to call her and REMIND her that it needs to be 5-12 days after.
Me: But I'm not getting a period right now.
Scheduler: Well then have her write that on your order.
Me: But I'm telling you ...
Scheduler: Sometimes they forget about the 5-12 days.
Me: I can't deal with this today. I'll call next week.
Scheduler: Sorry but you really need to call when you get your period.

I can only assume that if you schedule breast MRIs for breast cancer patients for a living, you would be aware that chemo causes menopause and lots of patients never get another period.

After this, Seth texted and asked if I could please stop at the gas station on the way home and get him Diet Coke. I stopped and the line was at least 10-deep to check out. So I bought a bag of chips since I was standing next to them for quite a while and screamed at Seth for not getting his own effing Diet Coke since we live across the street from Target. I instantly regretted it. And then I just started sobbing that it was too much. WHY DO I HAVE CANCER? WHY? WHY IS AENTA SO DUMB? WHY IS THE SCHEDULER SO DUMB? And getting through this is not even going to be the worst part. The worst part is going to be knowing that this fucking cancer might come back. In my bones, my lungs or my brain.

So, no, I do not feel like a warrior today.

But I will find warrior me again. I will get up on Monday morning and go to CrossFit and then I will let them put an IV in my arm and slowly drip poison into my body in my strong belief that this is killing my cancer for good. This fight is on.

Warrior prep: Here I am after my Monday CrossFit workout. Twinning (hair) with my coach, Miguel.