Saturday, April 30, 2011

Spring has sprung?

Spring has been a little slow to arrive this year. It keeps teasing us with a nice day here and there but if you like to ride your bike on dirt, it has been a pretty awful spring. Hopefully, and according to the weather forecast, today was the start of a long string of sunny and warm days. I look forward to fully appreciating these mild days, because in Utah it will be 90 and bone dry before you know it (or for me, before I'm done with chemo).

Speaking of chemo, my side effects continue to be mild this week. I would say that I'm functioning at at least 90% of normal for my daily activities and probably 50% of normal (or less) as an athlete. Yes, I am able to work, cook (although I don't:), tend house, tend myself, etc. No I am not able to drill it for 4+ hours on the bike. This makes for interesting conversation when reporting how chemo is affecting me to my doctors.

I am able to ride though. In fact, I rode off road three days last week, ran two days, hiked one day, lifted weights twice, and walked the puppy everyday. I will say that although a two hour ride feels great and is fantastic therapy, I am always spent afterwards. Today we headed down to Lambert Park so I could ride the course from last weekends race. It was fun, but by the end of two hours of singletrack bliss I was mentally and physically wasted. It was worth it though:)

(Photo credit Bonnie Schreck)

Hair update: Somehow, miraculously, my hair is hanging on. I am 'shedding' more than my puppy though:) I figure every extra day I have hair is one more day that I don't have to leave the house feeling like a cancer patient. I like that feeling.

Soapbox: I have already mentioned that next weekend is the Susan G. Komen Walk for the Cure fundraiser. I will be participating as part of Jen's Jug-ernauts team. I want to thank everyone who has already donated to this team; the team is already well over the goal of raising $1000. However, I want to encourage everyone who has not already donated to consider. Even $5 can make a big difference. The truth is breast cancer affects 1 in 8 women in this country. Eventually, someone you love deeply will be affected by this disease. Although I realize that a lot of research dollars have/continue to be spent to research breast cancer, there is so much more that needs to be understood in order to provide treatment with the best possible outcome. For example, two women with Stage 2 (which is what I have) breast cancer may have two completely different cancers that respond very differently to treatment. Other tumor characteristics that may affect how a tumor responds to treatment include: nuclear grade, size of tumor, estrogen receptor status, progesterone receptor status, Her2/neu status, lymph node status, Oncotype dx score, type of cancer, tubule formation, nuclear pleomorphism, mitotic activity, lymph-vascular invasion, and I'm sure a lot more. I find it interesting that if you speak to three different oncologists, you will most likely get three different opinions on how to treat your cancer. Clearly there is so much more that needs to be learned.
If you would like to donate to our team, you can here:


or please consider donating to someone else's team. The money all goes to the same place, and that is what really matters:)

On a lighter note: This is why my puppy is named Dizzy:




video

Tuesday, April 26, 2011

Week Two

I realize that I haven't posted in a while. The truth is, once chemo started my life got a lot less (medically) busy. In fact, I have only been to see a doctor once in the past two weeks! Amazing.

I am happy to report that most of my chemo side effects have resolved and I am able to carry on with life as usual. Not exactly my 'usual' life of racing and training, but life is moving forward.

Spring break is over and I am back to work this week. I have to be especially careful though because even though I feel fine my immunity is at its lowest point right now. It is nice to have some normalcy back in my life, and to feel good enough to be able to enjoy it. I am going to take a moment to brag about my job. I am an occupational therapist and work in one of Salt Lake City's school districts. Many of the students I work with have fine-motor delays and I often develop programs to help remediate their skills. Over the winter, many of my students crocheted hats as part of their fine-motor program. Mind you, I have no idea how to crochet, but fortunately my aide does:) This spring, my kiddos crocheted two beautiful hats for me. They are all so proud and the hats are absolutely perfect! Like I said. Awesome job. Awesome co-workers. Awesome kids.

I also appear to be completely healed from my mastectomy and am pretty much able to do whatever I want physically. I am continuing to stretch daily and am doing some light upper extremity weights to help maintain strength. I seriously doubt that I will be able to gain muscle during chemotherapy so I will focus more on making gains later this summer. The rest of the time I try to spend biking. The odd, pulsating low back pain seems to have (mostly) resolved and my tachycardia is also improving although not yet normal.

Right now, the most annoying thing is my skin. It is sensitive, yet oily and my normal skin products don't seem to be working. It is kind of like going through adolescence once again. I also have to be really careful in the sun, although recently in Utah that has not been a concern. I'm not sure if Spring will ever arrive.

At this point, I still have a full head of hair and my short hair keeps growing. It is really out of control and I need another haircut, but I'm sure the chemo will take care of that any day now......

As for the rest of the week, I think the sun may actually venture out so I plan on taking full advantage before I hit the (chemo) chair again next week.

1.5 weeks down, 10.5 to go

Thursday, April 21, 2011

Week One

Note to self: Monday after infusion will be the worst day. At least as far as energy levels go. After Monday, I was seriously reassessing how to prioritize my work caseload for the rest of the school year. I'm happy to say that since Monday my energy has been improving and although I still only have a fraction of the energy I normally do, I am able to live a (somewhat) productive life.

As for other side effects, I don't have many of the 'normal' side effects. Still no nausea, yeah for that! The side effects I do have are more odd. I have a significantly increased heartrate. As an athlete, I know what my 'typical' resting heartrate is so when I am sitting at 20-30 bpm higher I get concerned. That was call #1 to my oncologist this week. The exact cause, in my case, is not exactly known. However at this point we are optimistic that it will return to normal post-chemo.

Call #2 occurred after I experienced an odd pulsing low back pain when I was 'trying' to ride my mountain bike yesterday. It was most pronounced when I would try to get low and aggressive on a downhill, but I was partially attributing it to my increased heartrate from the climbing that preceded the downhill. The pain would decrease when I would sit up more perchy on my bike. Not exactly fun for downhilling. This pain has been more noticeable today ever since my ride yesterday. Anyhow, this was somewhat puzzling to my oncologist, but she attributed it to side effects from the Neulasta shot (helps improve white blood cells) I had Saturday. If this is the case, this side effect should improve over the next two weeks just in time for my next infusion May 6th.

On a non-cancer related note, this weekend marks the first race of the newly established Utah State Championship Mountain Bike Series. In my humble opinion, this series is going to RULE!!!! The series has reasonable entry fees for all racers, kids race for only five bucks, plus $5 of every entry is donated to Huntsman Cancer Institute. The icing on the cake is that over $8000 was secured for pro payout over the 4-race series. This is seriously what mountain bike racing should be, although I may be a bit biased because the series is promoted by some folks I know pretty well. Actually, no, I'm not biased. THIS IS WHAT MOUNTAIN BIKE RACING SHOULD BE! I will be helping with race-day registration so if it is all f****d up, I'll blame the chemo:) Check it out here: raceuscs.com

One week down. 11 to go.

Monday, April 18, 2011

The Fatigue Monster

Although the effects of chemotherapy vary for everyone, I am now going through what is often considered the hardest few days post-infusion.

I have no fever, vomiting, nausea, convulsions, significant pain, or any of the other horrible side effects you often hear of related to chemotherapy. For this I feel fortunate. I do have fatigue. It is the type of fatigue that I have never experienced before and it is not fun. Mornings seem worse. The thought of getting out of bed to make breakfast seems like too much work and once I do I go back to bed and rest again. I am always disappointed that rest does not really make me feel any better. By early afternoon, I seem to have mustered up enough energy to do a few things around the house and go for a bike ride. Today it was just an hour on the trainer. After my ride I thought I would just sit and relax for a few minutes. An hour later I was still sitting there staring at the wall. I am incredibly bored but lack the motivation to do anything fun, especially when it is raining. As for food, there is no point in eating yummy food, because nothing really tastes good. My go to has been toast with peanut butter and agave nectar. I think I had 4 pieces today.

On a positive note, I seem to feel better in the afternoon/evening and that is about right now. My puppy is patiently waiting for a walk, and since the rain has stopped for the first time today, I think we will go.

and now I feel bad for writing how tired I feel because right now I feel okay. Certainly not myself, but okay. Mornings are rough though.


Friday, April 15, 2011

Chemo #1

Preparing for my first chemotherapy infusion started yesterday when I had to remember to take Dexamethasone. Although I was not looking forward to taking this steroid because it can cause weight gain and bloating, not exactly performance enhancing, I knew it was necessary to help reduce possible side effects of today's TC infusion. I was also happy that I was able to talk my oncologist into reducing the typical dosage to only 4mg twice daily because I am a lightweight. I have to take two more doses tomorrow as well.

I have spoken with enough people that nothing about today's infusion really surprised me. It was, as expected a long day. I arrived to Huntsman via bike just before my 10:50 blood draw appointment and realized that I only packed a t-shirt. Not exactly what you want to be wearing while having cold liquid pumped into your body for 2 1/2 hours. Fortunately Shannon drove from work and was nice enough to go home and get me a sweater. When I hear of people commuting 3 hours to see their oncologist, I feel very fortunate that we live only 6 miles away from Huntsman Cancer Institute.

I then met with my oncologist and she looked at my incision one last time before clearing me to start chemo today. So far my mastectomy seems to be healing very nicely and I feel very fortunate for this as well. I am also happy to say that through a lot of hard work the past 1.5 weeks, I have full range of motion back. I have been diligently performing the recommended range of motion exercises twice daily and every day I notice improvement. I have not yet started strengthening exercises, but I am hoping the plastic surgeon will allow me to start this after I meet with him next Tuesday. I can already tell that a lot of strength is coming back just using my arm functionally. I am completely confident that I will regain full pectoralis strength and I plan on writing a paper on my progress. I have baseline pre-surgery strength measurements and my goal is to regain full strength my January.

Back to chemo. Like I said it was pretty uneventful. After given my final clearance we were off to the infusion waiting area. It takes at least 30 minutes to prepare the chemo drugs after MD orders. During this time I was approached by a research assistant who asked if I wanted to participate in a study. The study requires that I call a hotline daily and answer questions regarding any side effects I may be experiencing. The study group gets a return telephone call that same day from a Nurse Practitioner to help manage the side effects. The control group does not. Fortunately for the Huntsman staff, I was assigned to the study group, so I may be bugging them a little less. I pretty much agreed to participate immediately to help support research and later found out I would be compensated $300! I see lots of acupuncture in my future.

Speaking of acupuncture. I had my first visit on Tuesday. My goal for acupuncture is to help reduce any chemo side effects. There is some research that shows that acupuncture helps with chemotherapy induced nausea and acupuncture practitioners claim that it also helps with fatigue, muscle pain, stress, etc, etc. I decided to give it a try. The women I saw took a very thorough medical history and I was impressed by her breast cancer knowledge. She seemed to ask key questions that helped me to respect her as a therapist. Then she stuck needles in me. She stuck them in my feet, ankles, tummy, chest, (left) arm, and a surprisingly large number in my head. The focus on my head I found interesting:) I then took a nap and 30 minutes later she took them out.

Back to chemo, like I said it was very uneventful. Eventually, my cocktail was ready and I was called back to the infusion room. Huntman is the most beautiful hospital I have ever seen, however the infusion room was really nothing special. It was crowded and noisy, but the staff was wonderful and my recliner was really quite comfortable. My IV was placed easily and I was given some more steroids and anti-nausea medication. Then on to the infusion. All week I have been pretty relaxed about starting chemo although I admit when the poison started to go in I became quite nervous. It makes more sense to me to pump your body full of good things not bad, toxic, debilitating things, but I am making an exception just this once. The first drug was Taxotere. Apparently there can often be an allergic reaction in the first 20 minutes and I was watched very closely. I even gave my nurse a scare when I choked on my smoothie, but fortunately no reaction. A few hours later we were ready for Cytoxan. 45 minutes later, and 6 hours after we arrived, we were released to go home.

Overall, I feel really good, but it may hit me like a brick tomorrow. I'll just have to wait and see. Everyone responds differently to chemo so it will be a waiting game to see how my body responds. My immune system will be weakest at about day 10 and then I should start to get stronger as I get closer to my next infusion. The one thing that was emphasized over and over again is to exercise. I am planning on riding my bike tomorrow to the hospital again to get my Neulasta shot (to help white blood cells).

In the meantime, I need to stay on top of my medications. I have been told about a hundred times to not try to tough it out and to just take the meds. I suppose, just this once, I will comply with this as well. The amount of medications I am on is pretty daunting. I already made a cheat sheet and my nurse made another for me as well.

Next week I am on Spring Break so the timing is perfect to give me time away from work to see how my body responds from this first infusion. I am looking forward to lots of yoga, bike riding, acupuncture, yummy food and rest.

Getting ready to run my first infusion. I was nervously drinking a smoothie here. I was told that popsicles during infusion help reduce mouth sores. Unfortunately the popsicle I brought melted, so a smoothie had to suffice.

Monday, April 11, 2011

A melancholy weekend

Back in December, when I was planning my 2011 race season, I registered for Whiskey 50 and 12 Hours of Mesa Verde with the intention of peaking in late April/early May for these two races. I was especially looking forward to Mesa Verde May 7th. The course is wicked fun and a large SLC contingent heads to Colorado contributing to the 'party' atmosphere. Shannon and I were to race as a Duo relay team for 12 hours. We did this race in 2009 and finished 2nd and the plan was to improve upon that finish this year.

Well, I have now sold our registration to this race and instead Shannon and I will be participating in the Salt Lake City Susan G. Komen 5k Race For a Cure that same weekend. This is a bit melancholy for us, however I am truly honored, if not a bit embarrassed, that some of my incredibly supportive co-workers have started a team in my honor. The team name is Jen's Jug-ernauts. As one of my co-workers pointed out, Juggernaut is a term used in the English language to describe a literal or metaphorical force regarded as unstoppable. It is often applied to a large machine, or collectively to a team or group of people working together, or even a growing political movement led by a charismatic leader-and it often bears an association with

being crushingly destructive. This name choice is incredibly flattering plus it has 'Jug' in it which adds to the appeal:)


Admittedly, I am fearful to be around so many women who are and may look sick, especially when I continue to feel pretty darn good. I like to deny anything is wrong with me at all. However, each one of these women is a survivor which should serve as incredible inspiration plus the Susan G. Komen foundation is an incredible resource for people with breast cancer and I want to show my support. Their website was my first resource when I was diagnosed in January.


If you would like to participate in the walk or donate to the Susan G. Komen foundation in honor of our team, follow this link: http://slc.info-komen.org/site/TR/RacefortheCure/SLC_SaltLakeCityAffiliate/97412945?pg=team&fr_id=2133&team_id=159706


On a positive note, I just finished my first ride outdoors in over two weeks. I may have gone easy, but I felt so ALIVE!


Sunday, April 10, 2011

Cleared for chemo

Friday I met with my medical oncologist, Dr. Buys, at Huntsman Cancer Institute to get final clearance to start chemotherapy next week. I haven't seen her for about a month and I've been keeping a running list of questions to ask. This list was long to say the least and the questions ranged from her opinion on eating soy (a phytoestrogen) with estrogen receptor positive cancer to her thoughts on using taxotere (a chemotherapy drug) despite research showing some tumors to be taxtotere resistant. Question everything, right? I was initially checked in by an internal medicine resident who listened to my heart and lungs and asked if I had any questions. Ha! Did I have questions! I pulled out 'the list' and started asking away. He listened and then left the room. When he came back he brought Dr. Buys, her Nurse Practitioner, the nurse, and another women (I'm guessing another resident). I guess they all wanted to hear my questions:)

Anyone who knows me well knows that I can be a little shy especially with large groups of people. Even though this was my 24th doctor appointment since the middle of January, I felt a bit of stage fright as I went over my list of questions with five medical professionals in the room. On the flipside, my questions must have been interesting enough for everyone to want to listen. Fortunately, I had my trusty list (and Shannon) and all of my questions were answered.

I appear to be healing very well and Dr. Buys cleared me to start chemotherapy Friday April 15th. My chemotherapy cocktail will be TC (taxotere, cytoxin). Yes, in regards to one of my questions, some tumors are resistant to taxotere however there is no reliable test to determine this. Studies show that overall this regimen is very effective. TC is quite toxic though and I will have some crummy side effects, however Dr. Buys is confident that this regimen won't negatively impact my future physical performance. I will be having four total infusions; one every 3 weeks. My final infusion will be June 17th. I am picturing a summer party to celebrate this milestone!

In the meantime, I have been feeling good and exercising every day, although I do still seem to fatigue easy. I still haven't ridden my bike outside, partially because it has been uncharacteristically cold and snowy. Friday afternoon, on what should have been a sunny spring day, we took Dizzy for a hike in fresh snow.



This trail was dry enough to ride over a month ago. Not today!

Dizzy doesn't mind a few more days of winter

Wednesday, April 6, 2011

Really, I just want to blog about biking......

......but I can't do that quite yet.

Yesterday I had an appointment with my plastic surgeon. Everything is healing very nicely and my final drain was removed. 11 days of drains was enough for me. I am supposed to take it easy for a few days so that I don't have too much fluid build up now that the final drain is removed. I was also cleared to do some structured stretching which I started pretty much as soon as I got home from the hospital. I have been very careful (at least I think so) during this initial healing process. My goal is not to see how fast I can get back on the bike, but to heal completely and get through this stage complication free, and then get back on the bike. I did go to the gym tonight and pedaled the recumbent bike though.........

I also visited with a Naturopath yesterday. My goals for this appointment were 1) To support my body during chemotherapy and 2)Reduce chance for future cancer recurrence. We tackled goal #1 yesterday. We discussed a few different interventions. The primary recommendation is high dose glutamine. The following research was sited:

Clin Cancer Res. 2001 May 7(5). "Patients receiving Taxol given glutamine vs. no intervention". Dosage of glutamine was 10 gms 3 times daily for 4 days, starting 24 hours after treatment. Showed statistically sig reduction in: motor weakness, gait deterioration, numbness/dyesthesias; and improvements in overall activities of daily living.

We also discussed probiotic use and antioxidant use. Antioxidant use is controversial with chemotherapy so I will present this to my oncologist later this week. Fish oil was also recommended as it enhances the cellular 'killing' effect of taxanes. Interesting stuff....

Today was also my first day back to work. I worked a 1/2 day as to not overtax my body on my first day back. I felt pretty good the entire time and after the initial socialization with co-workers was really quite productive. I'm hoping to be able to work a full day tomorrow.

Even though I am back to work and able to carry out most activities, I am certainly not back to normal. Simply lugging my stuff in and out of my car is difficult right now. Hopefully every day continues to get better.

Next up, I meet with my medical oncologist on Friday to get final clearance to start chemotherapy April 15th.

Sunday, April 3, 2011

Numbers

When faced with cancer, you are constantly being presented with statistics. Or in my case, being presented and personally researching statistics. This has me thinking a lot about numbers recently. Here are some numbers that are on my mind.

1. I had a .6% chance of developing cancer as a healthy 35 year old.
2. Being diagnosed with cancer is a whirlwind of doctor's appointments. I have consulted with my primary care physician, surgical oncologist, medical oncologist, radiation oncologist, (2)plastic surgeons, nutritionist and soon a naturopath. This has resulted in 20 doctor's appointments since January 13th. That is at least 2 appointments per week for 3 months straight. I have three more appointments next week.
3. When I fill out my 'new patient information forms' (which I do quite often recently) I don't have to check any health problems with the exception of occasional heartburn and now cancer. Checking cancer freaks me out.
4. I've never needed surgery. Since January 20th I have had two surgeries requiring general anesthesia, one with heavy sedation, and two procedures.
5. Interestingly I was given 40 pain pills post lumpectomy and only 30 post mastectomy. Mastectomy (with tissue expander) is much more painful than lumpectomy.
6. I have had a little less than 200grams of tissue removed from my body. This is a little less than .5 pounds. As a cyclist, this inches up my power to weight ratio just a little bit:) I do not recommend removing body parts to improve power to weight ratio though. Also, I am not accounting for the weight of the tissue expander. Maybe I will ask my Plastic surgeon how much this weighs for more accurate measurements.
7. I was told that there is a 1% chance per year of developing a new cancer in my other breast over the next ten years. If I take hormones for 5 years this is reduced by 50% so there is a 5% chance of developing a new cancer in my other breast.
8. According to my Oncotype Dx score (gene expression of my tumor) my risk of distant recurrence (this cancer coming back somewhere else in my body) with hormone therapy alone is 13% over 10 years. Chemotherapy reduces this by 4-5%. I chose to undergo chemotherapy and get that 4-5% reduction.
9. I like to ride bikes. I also seem to collect bikes. I currently have 7!!!!! bikes. I have two carbon fiber 29er hardtails, one carbon fiber 26" full suspension, two cross bikes, a 26" single speed, and a road bike. I like to ride all of my bikes.
10. I have worked in the school system at my current job since 2005. I use on average 1 sick day/year and I don't go to work sick (which would skew the statistics). Somehow my immune system is strong enough to prevent me from getting sick even though I am exposed to sick children daily, yet I develop cancer at 35 years old. I will never understand this, I am working on coming to terms with it.
11. I am currently on a plant-based diet based on the recommendation to primarily eat plant-based foods to reduce risk of cancer. A funny story related to this is when Shannon and I stayed at the Bed and Breakfast by Colorado National Monument a few weeks ago. Instead of bringing a cooler full of wine, we brought a cooler full of leafy greens! I have had animal product exactly 2 times over the past six weeks. A friend brought over fresh Elk chili. It was yummy.
12. I have never taken supplements, pretty much just a daily vitamin. Now I take a daily vitamin,a calcium supplement, a vitamin D supplement, and a fish oil supplement.
13. I am an extremely healthy person, however I am going to make myself very sick because of a 2cm tumor that I found myself. I often wonder what my life would be like right now if I never found that 'nodule'.
14. I think (based on this post) it is clear that when I'm not keeping myself busy working, cycling, visiting, and doing other fun things that I have toooo much time to think.