Post-Mastectomy Follow-up #1

Today I met with the surgical oncology team at Huntsman. Everything is looking pretty good. There is still some swelling and some possible redness of the skin that will be watched closely although Shannon thinks that it is just my normal blotchy skin. The good news is that my drain output has been minimal so we were able to remove one of the two drains today. This made me especially happy because it was the more superficial drain and I could see it under my skin. Totally creepy. The build up to drain removal was intense. For some reason I was convinced that it would be excruciatingly painful. I described to the nurse how I envisioned a hook at the end of the drain (I was certain I could see that under my skin) tugging at my tissue as she pulled it out. I also envisioned her ripping it out like a bandaid. I lay on the table hardly able to breathe with my eyes closed. I didn't even know when it actually happened as Vicki (the nurse) kept talking. Felt nothing. So for all of you who keep telling me I'm tough......I'm really a wimp!

I don't meet with this team again until June. I think I may be on to the next phase of this journey.

As for post-surgical discomfort (aka pain) that has been decreasing every single day and I am pretty much tapered off the pain meds. Sometimes I find myself feeling so good that I will jump up and and do something out of habit. The associated discomfort (aka pain) often reminds me that I am still really sore with certain arm movements and lifting is not yet allowed.

My next follow-up is with the plastic surgeon on Tuesday. Hopefully the swelling will be down, no sign of infection, and the final drain can come out. Later in the day I have an appointment with a Naturopath. I'm really excited to meet with this woman. Hopefully she can help me cruise through chemo although I'm not sure that is even possible. Then, Friday I meet with my medical oncologist who will give me final clearance to start chemotherpy the following week.

I also want to thank everyone for the cards, flowers, food, and goodies. We have not had to cook a single meal this week and have had the yummiest plant-based, leafy green, anti-cancer meals brought over. I must say that I feel kind of guilty when people bring things over. All this resting has resulted in a lot of pent up energy. I am kind of a spaz. Even though I feel great it is really difficult to do things around the house. We really appreciate everyone's kindness.

Radiation

Radiation is often used to control for local recurrence with breast cancer. When a lumpectomy is performed, even if clean margins are obtained, radiation is indicated almost 100% of the time. This is because there is the possibility of some stray cancer cells wandering the breast tissue that increase the likelihood of local recurrence. Post-lumpectomy radiation significantly reduces this risk.

With a mastectomy, radiation is NOT indicated if 3 criteria are met. The criteria are as follows:

1. Tumor less than 5 cm in size

2. Negative lymph nodes

3. Completely clean margins of greater than 2mm (it is possible that the cancer gets too close to the skin or chest wall)

Up until today I had 2/3 of these criteria met. This is one of the reasons I chose mastectomy. I was (kind of) gambling on getting completely clean margins in hopes of avoiding radiation. Today, I won that gamble. My margins are clean! As far as I know, I will NOT be needing radiation. Although radiation techniques have improved significantly it is still a 5 day/week treatment that lasts 6 weeks (unless you are lucky enough to get into a clinical trial). Not needing radiation also opens up my reconstruction options. Options are good. Also, long term implications of radiation (for a 35 year old planning to live another 70 years:) are not completely clear.

Besides the good news, I think I am healing right on track. I once again feel great and if it weren't for some physical limitations and discomfort from the expander I'd be rearing to go. I've been told that I can walk as much as I feel like. Today I walked around the block whenever it stopped snowing. Tomorrow it is supposed to be nice, so maybe I'll increase distance and duration:) Thursday is my first follow-up so I'll know for sure if my healing is on track.

Sugery Numero Tres

Pre-surgery blues (self portrait)

Hopefully three is a charm.

Yesterday I underwent a right mastectomy. So far, everything has gone well.

I arrived at the hospital at the requested 9:00 AM time, even though my surgery wasn't scheduled until later in the day. Apparently I had been wishy-washy on my final surgical decision and the ever-understanding Huntsman staff wanted to give me time to talk through any last minute wish-washiness.

I knew that I wanted to have a mastectomy, but I was undecided about when to do it. This is very complicated, but I will try to explain it while under the influence of Lortab:)

Actually, nevermind. I just typed up a whole page trying to explain all of my options and it didn't even make sense to me. I will try to summarize later this week.

In the meantime, this is what we did:

1. I had a right total skin/nipple sparing mastectomy. I can not describe how comforting it is to wake up and see your 'stuff' down there. I am very fortunate that my surgical oncologist is so experienced with this procedure. The same incision was used as what was used for my lumpectomy so there will be no additional scar.

2. The plastic surgeon placed what is called a tissue expander inside my breast. This is basically a balloon that can be filled as much as I like. I see 'DD' in my future:) Just kidding. I've already been getting a hard time because I choose to be the same 'small' size I was before. Already there is not much expanding left to do.

3. This approach is called the 'Burn no bridges' approach. There are a few options for final reconstruction and I will go into more detail later this week when I am more coherent, however have some time to make this decsion.

In the meantime, I have recovered well and am now at home after spending one night at Huntsman. I must say, the accommodations at Huntsman are very nice. It is kind of like staying at a fancy hotel with free room service. Shannon stayed with me so I truly had nursing care around the clock. My only post-op complication was some nausea when I got up to walk last night. It would go away as soon as I sat down. My anesthesiologist once again did a great job and I have a good appetite today.

Relieved to be done

Shannon packed my Breck Epic belt buckle to remind me how tough I am

Homemade granola bars. Yummmm. I love the compression boots. I could have taken them off hours before, but chose to continue the lower leg massage up until we left.

The view from our room. Not bad. I could see runners

and cyclists on the Shoreline all morning:(

It is ironic how crazy busy I made myself last week prior to surgery trying to get things done. I wanted to get some 'last chance' workouts in, clean the house, stock the cupboards, etc, etc. Now I have endless amounts of downtime ahead of me. I can already tell that it is going to be a long week or so while I wait to have the drains removed and can start to be able to use my right arm more.

I really appreciate all of the notes and well wishes I have been receiving. It means so much. And now I will actually have some time to respond:)

It is what it is

Tomorrow I am going in for what will (hopefully) be my final surgery in awhile. Or at least for a couple of months. After weighing my options, researching thoroughly, talking with others in similar situations, and lots of tears I have decided to have a mastectomy.

I could go on and on about how I came to this decision, but basically it came down to my young age and increased chance of local recurrence if I don't have a mastectomy despite research showing similar long-term survival in mastectomy vs. breast conserving treatment (lumpectomy). Fear was definitely a factor in my decision. It scares me that cancer somehow found a way into my strong, fit, and healthy body. More than anything, I want to move on with the next chapter of my hopefully very long life.

This has been the hardest decision of my life. My head is constantly spinning weighing the pros and cons of each option and the possible outcomes that I have no way of predicting. Over the past few weeks I have been all over the place emotionally. Some days (or moments), when I choose not to think about it, I feel great. Other days (or moments), not so much. 3 months ago if you asked me how attached I was to my breasts, I would probably be more or less indifferent. When put in this position, it is amazing how that changes. I also worry about needing more procedures down the road. Really I just want to be done!

The good news is that there are options for reconstruction, some of which I just learned about this week. My surgeon(s) are very skilled in this area. I am hopeful that I end up with cosmetically attractive and perpetually perky breasts:)

I catch myself sometimes feeling sorry for myself, however with everything going on in the world today I really do feel fortunate. I feel healthy, have a wonderful husband, supportive family and friends, a great job that I love, and medical insurance.

Most importantly I have passion for living.

Hair

My hair is so thick it took 4 ponytails. All of which will be donated.

I can honestly say that the one thing about this cancer experience I have been looking forward to is chopping my hair. My hair has been in a ponytail since about 2004. I like my ponytail. It is easy, familiar, and comfortable. Cancer is not easy, familiar, or comfortable. I wanted to do something crazy. I'm not a very crazy person, so I expressed this feeling by chopping my hair.

I have been planning this haircut for quite a few weeks. In fact, I've been researching 'styles' much like I do everything else. Originally, I found a cute short cut that wasn't too short, not too daring. I was certain that was what I was going to go with. Then I found a picture of a super, duper short cut and I knew that I wanted to be brave, braver than ever, and chop it all. So we did.

Here is the progression of my hair cutting experience. My stylist was game to take photos and was very enthusiastic about chopping it all off. Shannon even joined in for some of the fun.

This is how my hair looked when I walked into the salon

The back

I think Erica left a little rat tail to be funny

Scared to look?

I am strong. I can do anything. Even rock a short cut.

Pigtails?

I may want to replace the 80s rocker muscle Ts for something more feminine for a while!

Fruita, CO

Shannon and I took one last getaway this weekend. We traveled 4 hours south (east) to Fruita, Colorado where there is an abundance of beautiful scenery and super fun singletrack. Shannon also booked a room at a bed and breakfast overlooking Colorado National Monument. Much nicer than our typical 'cheap-o' weekend motel. This weekend was all about riding and relaxing and yummy home-cooked breakfasts!

Friday afternoon we got a short ride in on the Kokopelli trails. It was a beautiful afternoon and the dirt was tacky from rain earlier in the week.

Overlook Day 1

Diggin' (not too) deep on a short climb

The scenery is always epic

Saturday we ventured to 18 road. These trails have been some of my favorites in the past, but today most of them were just lumpy from cow tracks. I decided to rename 'Chutes and Ladders' to 'Chutes and pot holes'. It was also super windy and I thought I may blow off some of the exposed cliffs. Fortunately I didn't. We had a great time regardless. My highlight of the day was cleaning all of 'Zippety-do-dah'. It is not the most technical of trails, but it seems there is always something that causes me to dabble. Not today! We got in a solid three hours of riding on this day and many more hours of relaxing.

18 Road trails

Shannon and I have debated this photo. I think it is sideways. He says that it is an optical illusion because of the steep (in Shannon's words: "Super steep, almost vertical") downhill before the photo was shot. I still think it is sideways.

We traverse the limestone mounds in the photo. I always think I'm going to blow off.

Sunday, we were back at Kokopelli trails to get in a couple hours before traveling back to Salt Lake City. We did most of the big loop and some of the more fun smaller loops. It started out beautiful, however the wind picked up on the cliffs of Mary's Loop. I did blow off the trail and into a tree today. Another great day of riding.

This was supposed to be a cool overlook on Mary's Loop. We kind of missed it in the photo:(

Finding speed on Rustler's Loop

(Don't worry Dicky, the visor comes off when I race for real)

This weekend was also unique in that it was the first time we left the puppy home. We had someone stay at the house, and it must have gone well. He hardly seemed to miss us and is already back into his routine.

Hats

Since I will be starting chemo in a few weeks, I have a new interest in hats. I have pretty much decided that I won't be wearing a wig, unless of course I stumble upon a hot pink or flaming red one.

Here are some of the hats I have so far. I was a bit spunky when I purchased a few of them, so fortunately I still have the tags and receipts. Not sure if I will actually wear most of them; I'm guessing that when it comes time for me to actually need a hat, I will be lazy and end up wearing a beanie like I do now everyday.

The prana beanie

Shannon picked this one out. Weirdo.

Basic corduroy

Classic khaki

This one was my favorite. Although I think it looks silly in the photo

This will probably be worn under a hat to add some color

In the meantime, hair is getting chopped next Tuesday. Now that will be a fun new adventure. I've been wearing a ponytail since about 2004 when my last short haircut grew out.

We're also heading to Fruita, CO tomorrow for one last getaway (sans puppy) before my own personal hell begins next week.

Downhill TT

Last fall, long before I was diagnosed with cancer, I attended a BetterRide Mountain Bike Skills clinic with Andy Winohradsky. Prior to the clinic I did a downhill time trial on a popular trail in Corner Canyon. This allowed me to get a baseline of my downhill speed on a trail I know well. I did this Time Trial three times and had almost identical times of 3 minutes every run. I then attended the clinic and practiced skill drills a few times a week over the fall. Then winter came and I spent more time on the trainer and at the gym than outside riding my bike. This spring, as we headed south a few times for singletrack Shannon kept telling me I was riding the downhills waaaaay better. I did feel pretty good, but then again maybe he was just being nice, you know, to the girl with cancer:)

Fast forward to this weekend. We have had unbelievable weather in Salt Lake City this week. So nice, that I was able to ride dirt every day for the past three days! Yesterday, I decided to put my new skills to the test and drove to Corner Canyon for some downhill time-trialling. My fitness isn't race ready, but it really isn't too bad. I thought it would still be a valid test. My goal was 10 seconds faster. I did a short warm-up and then headed to my downhill trail for my moment of truth. I rode as fast as I could but never felt out of control or like I was pushing the limits to0 hard. When I got to the bridge (my finish line) I looked at the stopwatch and it read 2:37. I took 23 seconds off my time from last year! I then recovered and did it again. 2:30. Now I was going a full 30 seconds faster than last year! It was amazing and I felt so good on the bike. When I do the math, I reduced my downhill time by 17%.

How will this affect me? I'm hoping in a big way. Park City Point 2 Point took me 9.5 hours last year. Looking at my GPS file, approximately (and I mean really approximately) 3 hours were spent downhilling. If I reduce that by 17% I can take a full 30 minutes off my race time without even climbing any faster. and I will be climbing faster:)

This photo just shows off my cool/fast bike

Here it looks like I have floaties on!

Trying to be low and balanced; allowing the bike to move under me

Hammering out of a turn

Still working on drilling the corners

Beyond the Cheers: BlogTalkRadio: Breast Cancer and Athletes

Dave Ferguson of Beyond the Cheers BlogTalkRadio contacted me a few weeks ago regarding being a guest on his upcoming show Breast Cancer and Athletes. I admittedly was reluctant at first. This diagnosis is still new to me and I certainly don't have much perspective yet, however I could not resist the higher calling of sharing my story and spreading the word that cancer can happen to even the youngest, strongest and healthiest.

The show starts at 5:00 PM MST tomorrow (Wednesday March 8th)

Information on the show including call in number and radio stations can be found at:

http://www.blogtalkradio.com/beyondthecheers/2011/03/10/breast-cancer-one-athletes-story

Cancer Free Weekend

This weekend was the kickoff of the mountain bike racing season here in Utah. I have raced the Desert Rampage in St. George every single year since 2004. It is one of my favorite races of the year. Not only because the course is so much fun, but because all the racers travel south for some fair weather riding. Although it is technically a race, it is really a social event. Even though my fitness is now nowhere near where it needs to be to keep up with the pro women, I headed south for some desert riding and to soak in a comfortable and familiar atmosphere.

Before we left, I wasn't sure if I would even be able to ride off road at all. My last surgery was exactly one week ago and I certainly did not want to do any damage to the incision. We arrived at twilight Friday night and wasted no time getting on the bike. Basically we threw on our helmet and shoes and took off wearing blue jeans and sweatshirts. It was still 60 degrees out and the (relative) warmth felt fantastic. I took off up Prospector and felt great to be on the bike riding singletrack. I could immediately tell that there would be more off-road riding for me this weekend.

Saturday was race day. I had mixed emotions about showing up to the race. On one hand it was going to be great to see all of my racing buddies. On the other, it was going to be really hard watching from the sidelines. It was a bit of an emotional day, but the joy of seeing friends and being part of the race scene overrode my sadness of not being able to race. I rode for a couple hours in the morning before the race and then was assigned to be photographer for MTBracenews.com. I was uninspired to take photos and did a lousy job basically staying in the same place the entire race; fortunately some of my photos turned out okay:)

Rippin' Stucki Springs

Sunday was another beautiful, warm day and we took the puppy for a hike before a fun ride on Bear Paw and Stucki Springs. I felt pretty darn good for a girl with cancer.

The best part about the weekend was that I took a 'break' from cancer. No doctor appointments, no books, no internet searches (well...maybe one or two). Basically a cancer free weekend. Ahhhhh, loved it.

Dizzy only gets to sleep in the bed when we travel. He took full advantage of that this weekend!

Pathology, chemo plan, and more

Thursday ended up being a full day at Huntsman. First we met with my surgeon to see how everything was healing. My incision looks good, but unfortunately the pathology report was not yet back. Apparently, it was not straight forward and the pathologist was taking her time reading it. The results did come back by the end of the day. My margins are clean (relief) however there is some DCIS (non-invasive Stage 0 cancer) less than the .1cm required margin so more surgery will be in my future. I knew that this scenario was pretty likely, but at least the margins are clean and if anything is to be close to the margin I would prefer the DCIS over the invasive cancer.

Next up I met with the medical oncology team. This pretty much took the rest of the day as they were very thorough. I was not surprised to hear that chemotherapy was recommended. Basically, there were three criteria that qualified me for chemo.

1. My age. Young people have a much higher risk of the cancer returning

2. The Grade of my tumor (grade 3)

3. The size of my tumor (2cm)

My chemotherapy 'cocktail' will be TC (Taxotere and Cytoxin). This has less side effects than the typical adriomycin 'cocktail' and is still very effective. Unfortunately there are still side effects and yes I will be losing my hair. I held it together pretty well all day until we started talking about the side effects of chemo. I was not concerned about the short-term annoying side effects (although they do suck) I am mostly worried about returning to my pre-chemo physical condition. The oncology team reassured me that yes, it will be a long recovery, but YES I WILL BE BACK! My eyes swelled up with relief. Chemo is scheduled to tentatively start Friday April 8th. I will get four cycles spaced three weeks apart.

The day culminated with a chest x-ray. I was told it was to get a baseline, but that didn't stop me from worrying about the results. Fortunately, they came back negative.

It was a long draining day and we were both ready for a break. Shannon and I headed down to St. George this weekend for some sun and singletrack. We arrived at twilight and threw our helmet and shoes on and rode Prospector. I was not sure if my incision would be ready to ride off road yet this weekend, but if our little appetizer tonight was any indication I should be fine. We were ripping it! I am sooooo excited to have a weekend that does not revolve around cancer.

Up next I will meet with the Radiation Oncologist and Plastic Surgeon next week. I have a lot of big decisions to make, but at least I feel confident about chemo.