My account of life both on and off of two wheels...... "At least I'm enjoying the ride"

Friday, July 30, 2010

A view inside the "Red Devil"......

This entry might be a little too strange, graphic or personal for some but to me, this is part of my journey. It is also the reality of many woman of all ages that get diagnosed with breast cancer every day. This disease, like so many others, does not discriminate. Cancer does not just prey on the week or the sick. It attacked me, so it can attack the healthiest, youngest of bodies which in my case age 36, an athlete, a competitor, strong both mentally and physically and lucky in love. It's not anything that I did, ate, drank and if it is, well that is neither here nor there and while I have my own theories, I will not waste energy trying to figure that out. The focus needs to be on my recovery and getting the cancer cells out of my body so I can resume some sense of normalcy in my life.

It has been almost two years ago to the date that I watched my sweet, strong amazing Aunt K go through this same process. Happy to report she is cancer free today! I went with her to her 2nd chemo treatment for breast cancer. I remember feeling so frighten for her as there was so much that I didn't know about and all I wanted to do was make her feel comfortable and know that I was there to be with her. I was there with her when she made the leap to buzz her hair that day. I watched as she was so brave and I held back my tears and just told her how beautiful she was. I was there to be strong for her or so I thought. I now get that it is hard for some to know the right things to say or do but sometimes tears are necessary, anger, laughter and sometimes just saying nothing is OK too. I have always been close with my Aunt K but we now have a bond between us that we will share forever. We are both survivors of this horrible disease to which there is no real cure only treatment. She is a huge support for me and I know that while she is not here in NY next to me, she will be there with me when I buzz my hair. Oh that will be today or started to fall out yesterday. Yikes!

Speaking of hair falling out, my oncologist yesterday and all my nurses loved my new haircut. I told them it started to fall out so no one was allowed to touch it, breathe on it or think about brushing it. I will not wash it ( good thing my hair does not get really greasy) and I will wait until tonight or tomorrow to go for the buzz cut. I don't really want hair all over my apartment. My doctor also reminded me to take another picture of my hair so when it grows back, I get it cut like this again. Good point so here is a 'selfy" taken in the doctors office. It looks different when I'm not in the salon. I don't blow dry or brush it much.

Barrett to try and stop me from fiddling with my hair too much. Don't want to stimulate those hair follicles....

So, as you all know I have cancer which sucks in so many ways but the only way to try to get it out of my system is to jam these drugs into my body. We tried the traditional I.V. method on round 1 and well, that did not work so well. We got them in me but it was quite a production. Wednesday I went in to have a small surgery to put the medi-port in. All went well and it was not too bad. It is a little sore but that is to be expected. I only have two steri strips on it and it's about the size of a quarter sticking out of my chest but under the skin, right under my collar bone. Because I don't have a lot of fat or tissue there, it's noticeable but who cares. When I go into my treatments, they access the port with a needle to attach the I.V. system. After that treatment, they pull it out and I go home with just the little bump sticking out. Piece of cake.

See, kind of dramatic with the equipment attached but so much easier.

One of the first drugs is what I like to call the "red devil". Remember, this is the one that looks like Kool-Aid. It is the first of the two drug combo that I get each time. for 4 treatments. I have two more to go of this particular 'cocktail' before I move onto another drug for 4 more treatments two weeks apart. This will put me through the end of October if all runs on schedule.

After my first round I had a lot of side effects. Some of which were of the allergic kind so after they checked my white blood cell count, which was perfect, they premedicated me with zantac and benadryl along with the regular steroids and anti nausea drugs. Then we start. Port or standard I.V. does not change the fact that the Red Devil gets pushed through slowly by my chemo nurse. While the port is really the safest way, they have to take all the same precautions.

So, away we go...

I have been thinking of these drugs as toxic, which of course they are extremely toxic but I read somewhere from another survivor her suggestion. Paraphrased a bit-"don't think of the drugs as toxic, it will make you feel toxic. Instead, embrace it as a medicine and imagine it like little Pacman eating up all the cancer cells in your body. I prefer Ms Pacman and so does my chemo nurse J. She got a kick out of that.

Get those cancer cells, go!

They hooked up the final drug and now they walk away. This one is not as bad so they can let it just drip like normal. It only drips for about 30 minutes than more saline for hydration. This drug can make you congested but mostly it leaves a metallic taste in your mouth while being administered so they recommend mints or gum. I personal love gum or lemon heads. Today, I chose gum and my mom ate the lemon heads. I now have the time to sit and look out the window and think. My mom sat by my side and we occasionally spoke about this and that. I decided to write in my journal a bit. Just some random notes of the days events.

Round two down, uneventful day and as my nurses all said "we love boring". I can't blame them. I do to! I started to have the same swallowing side effect but took another benydril and it seems to do the trick. Nausea is under control and G and I were able to take a short walk together last night and enjoy a little down time together. I feel tired and just trying to take each moment as it comes. Enjoy the good ones and when they are not so good, I will try to remember it does pass and I will have another good moment.

This weekend should be much cooler than the most recent ones so I am hoping to be well enough to get a nice ride in and if I am feeling strong enough go cheer on my friends, teammates and my guy who are racing this Sunday. This is the weekend of the Darkhorse 40. A 40 mile mountain bike race. I have done this race twice and it is a tough one but a lot of fun. Two years ago was my best showing as I took first place in my class. Last year I had a horrible race as it was unbelievable hot and I felt sick at the start. I finished the race with a respectable 3rd place but was hoping to come back stronger this year. Oh well, there is always next year. The weather looks great for Sunday so GOOD LUCK RACERS!

Me racing the Darkhorse 40 two years ago. Good times!

Sunday, July 25, 2010

Helmets and Hair

As I had hoped, my energy level was up substantially over the weekend. I will embrace these moments when I can and not ask questions.

This was Saturday's "training ride". Training for me has obviously taken on a whole new level. My goals are similar to when I am training for racing but it's just on a smaller scale. My short term goal right now is to increase my time in the saddle. Basically, go for longer. This was training ride number 4 and I made it the furthest yet! My speed has now increased enough that I think it may be time to wear my helmet again. Normally I'm a huge helmet advocate but I have been having trouble 'gearing up' for these rides as I have not looked at them as real bike rides. Arrogant, yes. Stupid, probably. Even though I'm only on the North County Trail, I should be wearing my helmet.

Video of Saturday's Training Ride- Made it to Briarcliff!

Sprint Finish- I promise that I did call out "on your left".

Oh to be back on two wheels feel so great....helps my spirits and makes me smile. Next, I hope to be on the road bike then the dirt. I dream of being on the dirt. Just need more endurance and strength.

Hair-A whole other topic that I thought I would never have to face in life. Hair loss is what many breast cancer survivors have to face. It happens anywhere from 10-21 days after your first treatment. I am at day 11....still blessed with my hair but it is inevitable and it will start to grow back after I stop my treatments. These drugs they are giving me kill ALL fast growing cells so that includes my hair, nails and well..that's all I'm willing to discuss today.

In anticipation for this event, I decided Saturday to call my local salon to see if they could squeeze me in for a hair cut. For those that have seen me recently, my hair is quite long. I thought of waiting until it started to fall out and just buzz cutting it but instead of watching it fall out in clumps, I decided I would cut it off and donate my lovely ponytail to Locks of Love. The foundation for children fighting their own fight and dealing with hair loss. My loss will be some child's gain. Ah yes, this will make me feel good. I text my sister at noon and ask her to join me on this adventure. I needed a photographer and support. Of course my sister was ready and willing.

I realized that I should have taken a picture of my hair right before I went into the salon but honestly, I forgot and it really was not looking so good that day. Here are a few recent ones.

One way I liked to wear my hair. Here is a photo that G and I took of ourselves waiting for the train to head into NYC to meet his sister and cousin for dinner. It had been right before my diagnosis.

Another way I liked to wear my hair. All the pink is not planned. I do actually like pink.

In the salon, getting mentally prepared.

The big cut! Notice, I am actually smiling. My sister and I were laughing about the fact that my battery died on my camera. Perfect timing, not.

There she is. My ponytail or what used to be mine.

The styling process. M.A. was the best spiriting hairdresser I could have had. She rolled with it and showed great professionalism and kept her sense of humor. Thank you M.A.

Still smiling...

Finished product. Me and my sister. Everything is always better with her. Side note-Notice her cute pregnant belly. Another thing to look forward to. A new niece or nephew who is due to grace our presence around October 31. Around the same time I finish my last chemo treatment.

I will have more on this topic of hair as time goes on. There are new levels of side effects that appear every day. In the meantime, I need to keep reminding myself that most of this is temporary and short lived. Along with this haircut. I give it a week until I have to go for the buzz cut.

Today I start physical therapy to regain my full range of motion in my left arm. Still have a bit of trouble with it. Wednesday is my medi-port surgery and Thursday is round 2 of chemo. Not looking forward to it but really, who would be.

Thursday, July 22, 2010

Who believes in super heros?

This question has popped into my head a lot over the past few months. Who believes in super heros anymore? Is it socially unacceptable to admit in public that I wish I had super powers these days? I have played make believe and dress up since I was a little girl. Halloween has always been a favorite holiday with my family. Who should I be this year? There is something to be said for being someone else for a day an hour or a moment. Do you think my wonder woman costume would be too much for my next chemo infusion? Would it change the facts? No but that along with an anti anxiety medicine could just put me in the land of make believe for a few hours.

My first chemo treatment was not what I had hoped. It can always be worse but it does seem like if there is a 3% chance of something happening.....I really should play the lottery.

So, chemotherapy is given intravenously in the arm. Because I had all my lymph nodes removed from my left underarm, I will never be able to give/draw blood or have blood pressure on that arm. This leaves me with only my right arm for infusions. I had gone back and forth on having a medi-port placed. This is another surgery and yet another scar. It's placed under the skin just under the collar bone and it's the size of a quarter. G and I have been discussing how this whole chemotherapy process has felt very science fiction like and the medi-port reminds my sister and I of the Matrix trilogy. Great movies and I'm not usually into the si-fi.

Trinity is quite the bad ass chick. Maybe when they plug me in to my port I can be her and go somewhere else until Christmas!

Anyway, the nurses can draw blood and infuse my medicines via this port. It is an easier process for the treatment days so less anxiety and also saves your veins from the highly toxic drugs they put in you. One of the first 2 drugs that they infuse will only be done 2 ml's at time because if it leaks out of the vein, it can cause permanent tissue damage. I really wish my nurses and doctors would stop saying to me " oh, but that never happens".

I was trying to relax in my fancy Lazy Boy with G next to me holding my hand. We had a nice view looking out towards the canopy over the Hudson River. They make these 'chemo suites' as nice as possible but it still doesn't change where you are. I tried not to watch as my chemo nurse slowly pushed the drug through my IV. This is the toxic one so they do this manually, just in case. It's red in color, looks like Kool-aid. Halfway through, the injection site starts to puff up. There is no pain ( which is what the first sign of trouble is) but this is strange enough to alarm my nurse and she quickly stops and withdraws the drug and about 3 mls of blood from me. There was still perfect blood return but the swelling made her concerned that the drug had leaked. "Are you F*#*@ing kidding me?". As they proceed to get my doctor and the nurse supervisor to surround me, I can feel it. they come. Now the chemo-suites are not private. I happened to be dead center. They pull the curtains, hand me the box of tissues and say, it will be OK. No matter how comforting it was to have G there with me, I was still scared. I have already suffered enough scars and injuries that a hole in my arm, really? They decide to give me an antidote that should help stop any possible tissue breakdown and send me home with a topical medicine to apply every 6 hours. Well, now we wait. A week to ten days to see if there is any change. Oh, sure...that's easy to say. Just wait to see if my arm starts splitting open. Whatever. I can only hope this was another fluke and not the real deal. Needless to say, I confirmed my appointment with a surgeon the next day for a consultation to have a medi-port placed. They found another vein to start an IV and the process continues with no problems.

I head home that night feeling a bit woozy. Not too hungry but need to eat and trying to ignore the nausea that is creeping it's way in. They give you these two anti-nausea drugs plus steroids. I thought I wouldn't want all of these drugs but have to say, they seem to help. I attempt to eat some dinner and the oddest thing happens. I can't swallow my food. I actually almost choked on my dinner. Ok, so this is not a normal side effect. At least not one that would start only 5 hours from the first treatment. After speaking with my doctor ( she is just a phone call away and on high alert with me) she says that if it gets worse to call her again but she will see me the next day for our follow up regarding the arm issue. The next morning I wake up super nauseous but regardless, I have to go to meet the surgeon about the port than back to the oncologist. Time to get my butt in gear and pop some pills.

Medi-port surgery scheduled for July 28. This is the day before my next treatment and by this time, my white blood cell count should be back up to a safe to operate level. These drugs they give me drop my white blood cell count so I need to be extra careful with germs and bacteria. Wash and scrub all my fruit and vegetables and stay away from salad bars, sushi, etc. If all is ok that morning, than the surgery is on.

Back to the oncologist for my check up regarding the IV site and my scheduled shot. This is the shot that helps to boost your white blood cell count and is given the day after each infusion. The nurse and I discuss my difficulty swallowing and her and the doctor were not impressed with this. They decided to give me an IV of Benadryl and send me home. If it was not better the next day, they wanted me to go to the ER. Thank GOD that worked and that night I was able to eat and have no problems swallowing since. Now, why did this happen? They seem to think that it might be one of the anti nausea pills but frankly, it could be the chemo as well. I have no choice but to press forward. Without that pill, I WILL be throwing up so next round I will take Benadryl before my infusion and after and fingers crossed, no problems.

Besides all the drama, the side effects have been bearable. I have been achy, tired and nauseous for 5 days straight. Today is the first day in a week that I feel like I can actually talk on the phone or work on the computer. I have been unable to do much between the heat, the bone pain and the overall feeling like crap that I am looking forward to getting out and about this weekend.

I did manage to get one bike ride last weekend even though I felt so horrible I thought I might throw up on the North County Trail.....

Thursday, July 15, 2010

See ya cancer!

So we decided to ride our bikes to my first chemo treatment.....

Just kidding, but this was my pre-chemo ride this morning

I am off to my first treatment. Time to kick some cancer cell ass today!

Tuesday, July 13, 2010


Thursday it is. I had my blood work and EKG done yesterday so on we go. Thursday is my first chemo treatment. I had a friend ask me yesterday "what does starting your first chemo really mean?". I have been the unfortunate one who has received a crash course in cancer lingo and realize to most of my piers, young and healthy as we all should be, this is a first for them as well. Their first time to have to watch a friend go through this crap that I call the cancer vortex. So, for those that don't know or don't want to ask. First was the surgery to remove the tumor from my body, check. The tumor removal was successful but since the cancer was found in my lymph nodes the next step is chemotherapy. The lymph nodes are how the cancer can travel to the rest of your body. True my PET scan was clear which is fantastic but cancer is sneaky and likes to deposit cells in your body that may be too small to see on even the most sensitive scans. OK, so what next? Chemotherapy is really the second stage of treatments and my best chance of survival. Recurrence is clearly not an option so I wont' even entertain that. So, what does my first chemo treatment mean? It means that starting Thursday, I will receive the first of many toxic "cocktails" intravenously pushed into my body to start to kill any remaining cancer cells that could be lingering. It also kills almost everything else in it's course and can make me feel like junk. Scared? Hell yeah I'm scared! It's mostly the anxiety of not really knowing how my body will react. I just started to feel like myself again. Not really myself but a new form of me. Now what will happen to my body? I know many women have been through these same treatments and remind me that I will get through this and there is a life on the other side of this but no matter how brave I can try to be and how strong I know I am, there is always fear. I have to look at this as my very own Tour de France. My cancer treatments will be like a very long stage race. For those that are following the 2010 TDF, I am entering the mountain stage of my personal race this week and of course I am looking for a podium finish!

Speaking of biking. Onto something more exciting.... Sunday morning I decided was the day to go for my first bike ride post surgery. Although you would think I would be excited, I was nervous. What if I wasn't ready? What if I hurt myself? One would think that I wouldn't get injured on the North County Trail ( paved bike path that starts up the road from my house) but you never know. I don't want to set my recovery back. I will just have to take it easy.

Getting pumped up. I am still unable to lift anything especially my bike so here is G getting the bike all set to go before taking it down to load on the car. Normally we would ride from the house to the path and be on road bikes but the hill going to the bike path would be a bit much for the first time out and the mountain bike is that much more comfortable.
Tires were pretty flat.

Count them. One, Two bikes on the top of my car!

Getting ready to roll. Can I even reach the handle bars? This was a lot harder than it looks and quite humbling considering what I could do 7 weeks ago.
A lot harder than I thought.

And off I go.


I think we did about 7 or 8 miles in 45 minutes. This should give you an indication of how sloooooow I was moving. Stay tuned for the short video. I still have a very long way to go before I can "ride" my bike but I will be back. In the meantime, I will try to get in these training rides as much as my body will allow.
NCT-Riding Bikes.

See ya on the trail. North County Trail that is!

Friday, July 9, 2010

Recap and moving forward....

As the new weekend approaches rapidly, I figured I would take a quick moment to recap on my weekend getaway and what is next in my world.

After I was given the go ahead to travel, G and I eagerly packed the car ( well he packed while I watched) and headed for Maine.
All Smiles.

But only one bike.....
But only one bike.....

That's ok, I was so happy to get out of town that I didn't even care, too much.
The sky was blue and the sun was shining and I was alive so really, I was ok with it. We had split up the 4 nights and spent 2 nights in and around Portland and 2 nights further north on an island. I really took time to relax, enjoy the great company, fantastic food and try to forget about what was coming ahead.

Here is the view from the main house on the island.

View from our room. I did not want to leave.
Heading to cocktail hour.

Vacation smiles on our nature walk

On our walk we found the sheep. Come to find, this was dinner for those that couldn't have lobster. I did apologize but from the look on their face, they were not pleased.
Sorry sweet lamb.

Thanks to my guy and his family, we had a great weekend!

So vacation is over and since we have been back, the electricity has gone out 3 times ( stupid heat wave) and I have caught a head cold. Oh well, this too shall pass.

Let's see....oh yeah. I have some ass kicking to do. Since I am starting to feel more like myself these days, I almost forgot (not really) that I still have a long road ahead of me. I have quite a list of things to finish both big and small tasks to prep for the start of my chemotherapy next Thursday. Quite a few more tests, blood work and I had my second appointment with the nutritionist that the hospital provides "free with diagnosis". Sweet! I actually have been getting a lot out of it. I have always been into the idea of nutritional therapy so I'm curious to see how this all pans out for me. She has given me a menu plan to guide me through chemo and keep me as healthy as possible while I force toxins into my body. There are lots of wonderful foods on the list that I already eat but some that I will have to start incorporating more of. Her idea is to keep me strong and hydrated through the use of whole foods. Here's hoping I can keep these foods in me...

Had my MUGA scan yesterday. It is another test but this time for my heart. I had to take yet another radioactive injection ( so if you see me glowing-ha just kidding) and they take pictures of my heart and how well it is functioning. They want to do this before I start chemo and will continue to monitor my heart throughout treatments to make sure my heart is handling the stress the drugs will be putting on it. Great!

I had my follow up appointment with Dr. D today. Did I mention that Dr. B is no longer my doctor? She was working on her fellow and well, her fellow is up. Since I only really need my plastic surgeon from this point forward, the timing works out. I have to say, I will miss Dr. B but I know she is still keeping tabs on me. I was actually quite sad about it but I know she is moving on to help other woman as she has helped me more than she will ever know. Anyway, Dr. D is also fantastic and I got to see her today. New stitches out and instead of risking anything, she super glued the area to make sure! I thought is was pretty funny but it is a super glue for the skin but I guess this is common and works like a charm. I may actually get to get one more 'fill" in my implant before I start chemo. It turns out, she works with my oncologist to time it so when my white blood cell counts are up, she can fill my implants. The reconstruction process continues to move forward so I'm pleased with that. While it is not the most important thing, it helps the ego a bit.

I have saved the really good news for last. I am allowed to up my exercise a notch and I asked Dr. D how she would feel if I took my mountain bike out on the road. A flat road of course but she said OK! Look out North County Trail, here I come! She did say I need to take it slow and easy and as long as I don't do much upper body, she thought that I might benefit from a little exercise. I would agree.