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

Thursday, October 28, 2010

A colorful future.

Last Thursday marked the end of my chemotherapy treatment- hopefully forever!  It was quite anticlimactic for me, but none the less, another part of this long process completed.   

 I am still working through the side effects- Emotional as well as the physical.  Some of the side-effects have gotten worse, which was to be expected.  These drugs have so many effects on my body ( and mind) that I have forgotten what is ‘normal’ - I am hopeful they will pass with time.  The doctor says there is a chance that some of them will not go away.  We discussed this in her office on Thursday when I told her of some new side- effects ( they don’t tell you all of them before you sign on the dotted line): most concerning was that it was starting to get bad in my feet.   She leaned back in her chair, looked me straight in the eyes and said “I want to give you this last dose, but I cannot take it out of you once it is in you and you need to be aware that this may be permanent”.  She left the choice up to me- take the last treatment knowing this side-effect could get worse and may be permanent or opt out of the last recommended treatment.  I guess you could say my decision was made mostly out of fear.  Not the fear of permanent nerve damage, but the fear that if I did not proceed with her recommend treatment, I could increase my chance of recurrence (stage IV metastatic breast cancer to one of my organs) - I opted to take the drug.   The pain and numbness in my hands and feet have gotten worse.My lips are numb again as well.  I feel as if I made the best choice that I could.  It is a good thing I am not really a runner.  I can pedal with numb feet – I think. But I can do without the sharp pains.
Lately, I have had friends ask me questions like: “did it work?”, “are you all better now?”, “how do they know it’s all gone?”  .  We never really know for sure if it worked.  We just assume (hope and pray) it did.  They will not do repeated scans on me as that would subject me to unnecessary radiation but they will do blood tests to check if my tumor markers are elevated.  I was told by my doctor on the day I started the chemo treatments that my tumor markers were normal and did not show to be elevated.  That and a clear PET scan was a good thing.  Blood tests are not always the best determinant if the disease is progressing or not, but it does give them a guideline.  I am told that there is no evidence to prove that a patient’s prognosis is any different if they find recurrence through a scan or if the patient shows symptoms.  Now I need to work on trying not to panic every time I have a cough or a headache and wonder if it has spread to my brain or my lungs.  Fear can be a powerful thing. 
Now what?  I still have a ways to go.  Since there is no cure for cancer, as a cancer diagnosis never goes away, there are still treatments I can have to help prevent recurrence.  I will continue with my Herceptin treatments every 3 weeks until September 2011.  I still have to go through 6 weeks of radiation that will start right after Thanksgiving.  Once I complete radiation, I will start taking the Tamoxifen pill for the next 5 years.
In the meantime, I will be trying to recover from the chemotherapy and hopefully get to enjoy some time on my bike.  The woods have been so amazingly beautiful here in NY.  I love the change of season and all the beauty it brings with it. 

Some great colors in a place that is close to my heart. 
Even on a cloudy/rainy day. 
"so many roads to ease my sole.." Jerry Garcia

Wednesday, October 20, 2010

Long road: A new mileage record on the road bike this past weekend.

We rode our mountain bikes on Saturday at Graham Hills for a couple of hours.  Although I rode well and did more technical sections than I have done post surgery- the mountain biking still takes a lot out of me.  So as much as I preferred riding in the woods, the road bike was the plan for Sunday.  G and I left the house with no expectations other than to enjoy the beautiful day together on our bikes.  As it turns out, I had pretty good legs and we were able to make it 42 miles! 

The only thing that could steal my fire that day was the reminder that next Sunday I would feel like junk again. 
Tomorrow is my last chemo treatment.  I guess one would think that I would be a little more excited.  Maybe I will feel different once the last of the side-effects clears out of my system- will all the side-effects ever go away?  I know I still have a long road ahead.   Anyone that has been around me during the last 4months knows that I get a bit grumpy the day prior to my treatments.  I guess it is because I know what is coming.

I do hope that this is the last chemotherapy that I will EVER need again.  

G captures a techy moment.
Smiles all day.  
Long Road.

Wednesday, October 13, 2010

Solo riding.

Today was my first solo ride since before my surgery.  It took a lot for me to motivate but I had to get outside on this beautiful day.  I took off on my road bike.  Wow, it felt so strange but pleasantly familiar at the same time.  My legs felt surprisingly good.  The fall colors are becoming more vivid and I could hear the leaves crunching under my tires even over my i-pod.  The Lakes were calm and empty of all the geese.  They seem to have already left for the season.

I forgot how my perspective can change when it is just me and my bike.

Tuesday, October 12, 2010

Free time has new meanings.

Time has been very precious for me these days.   I am usually running from one doctor appointment to the next one. And when I’m feeling “good” I am trying to get as much done in between appointments as I can without overdoing it.  That means some sacrifices: Work, exercise and mostly social seems to have fallen down the list. I am trying to slowly put them back up the priority list but it is not always that easy.   Just when I think I have my groove back, I have another appointment to squeeze into my day or I am too tired to do all the things I used to do in a day. Then it is time to get my treatment and the cycle begins again.  

No matter how I mentally or physically prepare for these treatments, the outcome is almost the same.  The Taxol drug has been different but still miserable all the same. Thursday I get my treatment- it feels like a long day in the hospital.  I am usually fine on Friday and most of Saturday so I try to get things done. Starting Saturday night- the restless leg syndrome kicks in and I know what is coming.  By morning, the pain will start in my pelvis and it shoots all the way down to my big toe.   I am so exhausted that the idea of doing anything let alone go down my stairs makes me want to cry.   It is predictable down to the very hour or minute.  I had to get the Neulasta shot this time (the white blood cell booster) as my counts dropped substantially after my last treatment since I didn't receive it.  It just adds to the leg pain but it will keep me on track for my last treatment.  Yes, the last treatment is scheduled for October 21.  If I can keep myself out of trouble between now and then…I will be finished with the chemotherapy part of my treatment. 

These horrible days do not last forever and when my schedule allows, I am enjoying the awesome fall weather we have been having.  I am riding mostly on the road bike and only a few days a week.  I have been trying to see more friends and being more social again.  I have missed that so much.  Lunch dates have been special, early morning coffee or walks. Even those  20 minutes in-between-appointments to grab a cup of tea with a friend… those moments mean so much to me. 
Me and C. - friends, sunshine and a cup of tea make me smile.  

This photo was actually taken by a kind women that was also at Starbucks while we were having a quick tea. She must have heard us laughing about our quick visit and followed us outside where she offered to take our photo- thank you D. for capturing our smiles. 

Friday, October 1, 2010

October- when did that happen?!

It is still hard for me to believe that it has been six months since this whole cancer process started.   It was April 2 when I went in for my ultra sound.  I will never forget the look on my radiologists face and the tone of her voice when she reviewed my images.  I sat in her office with my mammogram x-rays surrounding us like I was in some sci-fi movie.  I know that she knew from those many, many films that were lit up on her wall that I had cancer.   I had no idea how much my life was going to change that day.  I do remember being really scared-I still am.   In a way I’m still not sure what is going on and I keep thinking I’m going to wake up from this such luck.

In attempt to keep things “normal” I keep trying to participate in life as much as I can even when it is hard for me. Last Sunday, was a challenge for me.  G had been working on a project for some time now and it involved an underground, grassroots’ bike race of sorts-The Bottle Ride.  He would be hosting this ‘event’ and of course I did not want to miss this. While this was his dream for a few years, I felt very much a part of the final process.   Unfortunately it was scheduled for 3 days post treatment so there was no telling how I was going to feel. That morning, I felt exhausted after not sleeping very well.  I actually have not slept well since March, but this was a particularly rough night.  I managed to put on my tough girl, invisible wonder woman costume on and drag myself to The Bottle Ride and help my guy.  It was not easy, but it felt so great to be there and be a part of this as it meant a lot to both of us that I was there.  He tried to talk me out of it but anyone that knows me, knows when I get something in my mind that I rarely listen.  The event was a wonderful success and I was so proud of him for following through on this dream and not letting my cancer stop him.

Sunday afternoon and Monday were just as I expected.  My joints and bones ached so much that I just had to keep reminding myself, this is all temporary.   While it does and did pass – for the most part, I know I have to do this all over again next week.  It gets harder and harder to keep up my strength and spirit but I only have two more to go!

I have been struggling with a few things the past couple weeks: The exhaustion has set in both physically and mentally.  I have been told by the nurses that I’m slightly anemic due to the chemotherapy and that is just normal.  My white blood cells dropped substantially and I just hope my body can regenerate more before next Thursday so I can stay on schedule.  My body is really taking quite a hit and now I understand firsthand what people meant when I would  hear them say -the treatments will make you sick in order to get you well

As I go circling around this vortex, I get caught up in it all and have realized how isolating this process can be.  As much as I do not want cancer to define me, it does take up a ton of my time and energy right now.  It is hard not to think about it all the time and I find myself talking about it way more than I want to.  I can keep hoping for that day that might pass when I don’t remember that I have cancer.
So in the spirit of trying to stay normal…G and I had purchased tickets to see the film screening of Chasing Legends.  It was only playing one night in NYC so regardless of the pouring rain or me not being on top of my game, we kept to the plan.  During my weekly Herceptin treatment Thursday morning, my chemo nurse suggested I put on my wig (yes I bought a wig a while back) and meet my guy in the city, not as the girl with cancer but as his girlfriend.  That is exactly what I did.  It was pretty funny watching the look on G’s face when he passed right by me on the street.  He was looking for his girl- but not the one with hair!  What a great night we had.   I drove in as the theatre was on the upper west side and we met for dinner and headed to the movie at the Symphony Space.  Great venue, fantastic movie and great date night with my guy!

So it is now October and yes it is breast cancer awareness month.  We are surrounded by pink ribbons and commercials and walks to raise money for research and awareness and hopefully one day a cure.   Of course I am in favor of all of this but there is so much commercialism that surrounds this cause that it makes me feel a little weird about it.  I have heard from other survivors that they dread October as it’s a reminder of their disease and that they don’t like how everything “turns pink”.   I have not decided really how I feel about it all.  It is all still so new and I am still so vulnerable.   

I will say that I have come to find some great resources out there for woman with breast cancer.  I am also one to support locally when I can so, with that being said I will be walking this Sunday October 3 for the 16th annual Support –A Walk at FDR State Park in New York.   All proceeds benefit Support Connection –“not-for-profit organization that provides emotional, social, and educational support services to women, their families and friends affected by breast and ovarian cancer. The support provided enables women to help each other and empowers them to become their own health care advocates.”   I know where the money is going so that makes me feel good about the cause and I am personally grateful to have access to this resource.  

Have a great weekend everyone and happy Fall!

Great film...