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

Tuesday, November 30, 2010

I think it is time.

Although this has not been done intentionally- I have been holding onto my hair.  Yes my hair that I was and still am planning on sending into Locks of Love. I didn't really mean to hold onto it this long, really I did not.  

If you recall back in July, I took control of the inevitable. My chemo induced hair loss.  I cut it short and saved the ponytail to send into Locks of Love.  Two weeks later in August, I had my second treatment and my hair started falling out rapidly so I went for the buzz cut.   Things seemed a bit manic those days and I usually felt horrible on the days following treatment so after I had come back from the salon with my ponytail, I just put it in a zip lock bag and set it on a shelf.  While I was reorganizing things  a month or so ago, I stumbled upon it.  I thought about not opening the bag but I couldn't resist.  There is was.  My beautiful ponytail.  I ran my fingers through it, held it up to the light to see the beautiful colors and thought- Oh how I miss this hair.  Wait, this is so weird.  I have to mail this right away.  I scratched my bald head, thought about my beautiful hair and put it back in the envelope ready to mail but left it unsealed.  Life got busy and than I forgot again....damn it.  Is it chemo brain or can I just not let go of this ponytail?

Do you know how much i loved my long hair? I did. If I were to be vain about myself physically, one of the two things would have been my long hair.

Over the past month my hair has started to grow back pretty quickly.  I wish my eyebrows and eyelashes would come back quicker but all in due time.'s growing!

I think it is time to let go and allow for "new growth".  During this whole cancer process, somethings have been harder than others to let go of.  I thought I would be thicker skinned with the hair loss but frankly, I'm over being bald or worrying about covering up my head in public.  At least it is wool hat season!
The envelope is sealed and ready to go.

Wednesday, November 24, 2010

Week two of radiation and Thanksgiving.

I kept thinking over the course of last weekend that I was tired from such a long week of appointments, but I am now beginning to think the radiation has a huge part in why I am feeling so exhausted these days. 
Saturday morning G and I attempted to get up and meet a group ride at Blue Mountain, but even with our best efforts (OK, so maybe we could have tried harder) we missed the departure time by an hour.  It is just as well since I was not feeling on top of my game.  We rode for a couple hours and while we managed to find some of the group in the woods for a nice chat- we rode for the most part, just the two of us.  I am so grateful to have such a great guy who wants to ride with me no matter what.  I always enjoy our time together and the time in the woods is even more special. 

After our ride on Saturday, I chose to rest up since I had plans to go to my mom’s for dinner.  My brother and his family were in town for the night and I didn’t want to miss my chance to play with my nephew.  I was still pretty tired, but managed to find the energy to give my nephew his first lesson of flashlight tag- priceless.  By the end of the night, I could hardly lift my arms (not sure what that is all about) and I no longer can scoop my nephew up in my arms to lift him up to my chest.  I am too weak…not to mention he is getting really big.
"do you think we will see any animals?"

Sunday morning had a lazy start.  G and I slept in and decided to keep things simple and we headed up the Aqueduct toward Croton.  It’s a great workout but not too hard on my body.  I felt surprisingly better than the day before.  We headed north from the house. 
Golden trails. 
Trying to get a selfie while pedaling. 
I better quit playing with the camera...G might catch me. 
Big Bird in Flight.
Lunch at the Silver Tips Tea House- Post ride.
It was a golden Sunday and I would not have done anything different- Except maybe take my anti anxiety pill before I went to bed.  

Unfortunately, I did not sleep well this past Sunday night, so come Monday morning, I  was once again exhausted.  I have tried to wean myself off my anti-anxiety medicine, but this may not be a good time for me to do this with all the appointments for my radiation treatments.  I woke up Sunday night in a total panic.  G is once again, so comforting.  He wrapped his arm around me with sweet kisses and whispered “it will be ok; shhhhh-it will be ok.” I could not really remember all the details of what really woke me up expect the feeling like my heart was going to jump right out of my chest.
During my radiation treatments, Monday appointments are a little longer than the rest of them.  I go into the radiation room as normal but before they can do the treatment, they have to take x-rays to make sure nothing has changed since the week prior.  Apparently I had a 1mm change in one of the 4 settings but nothing that can’t be corrected by the touch of a button.  After my treatment, the nurse comes and gets me and I meet with the doctor.  Dr M always answers all my questions and helps me get through some of my concerns.  He reminds me again of why I need radiation and takes a look at my skin to make sure I’m holding up ok.  So far, so good and I will continue to use the Aquaphor as a moisturizer until he advises me otherwise.  

Today after my radiation treatment, I had an echocardiogram.  While on the Herceptin drug, I am required to have my heart checked every three months.  I opted out of the MUGA scan this time since it is more radiation to my body and the eco is non-invasive and done with ulta sound.  From a clinical standpoint, it isn't always the best read on the heart, but my tech was able to get a great picture this morning.  The good news is my heart looks normal and I'm good to go!

Tomorrow is Thanksgiving and I am grateful for all the wonderful people in my life. I get the day off of treatment only because they are closed.  I will be back on schedule Friday morning.  I am happy to have the extra break in the week and plan to enjoy my morning with my guy on the trails before we head to his parents for the feast. 

Have a wonderful Thanksgiving everyone!


Saturday, November 20, 2010

Working on my tan.

I started my radiation therapy this week.  This is the newest  phase in my  Cancer vortex.  I had been looking forward to having another week "off" of any sort of treatment since the initial plan was to start after Thanksgiving, but in some ways it is best to just get this over with.

Radiation will be a series of 33 treatments-  It will be done every day, Monday-Friday over a course of roughly 6 weeks. It is not as simple as just showing up for treatments. There is a two part process  to go through before I could actually start my treatments. 

The first part was to have my simulation done- which I did a couple weeks ago.  Each new phase has been nerve wracking.  Anyone can tell you what to expect but until you are there, in the moment, you never really know how you will react.  On the morning of my simulation, I was lead into the dressing room by a  very pleasant radiation therapist.  He showed me where I would change and where the lockers were to store my personal belongings.  Every day I will come in there, get undressed from the waste up and put a gown on.  I will sit and wait for the therapist to come and get me.   The radiation oncology department has a different intensity to it.  Everyone who has gone through this tells me it is “easier” than chemo, but for me it completes this sci-fi experience of the whole cancer vortex.   Maybe I just watched too many Twilight Zone episodes with my father (mind you I was under 10 years old and these were very scary) but there is something to be said about what goes through your mind when you enter the cold, sterile rooms.  There are giant machines in the middle of the room and molds of other patients body parts stacked up on a shelf. These molds each have their own story to tell, but this of course is mine. 

For the simulation, I walked into this huge room and there is a CT scanning machine in the middle and a large glass viewing room off to the side.  The nice radiation therapist ( they are all lovely people)  was trying to make me feel more comfortable with my surroundings.  He began to explain to me what will be happening.  I had read the little radiation booklet they gave me during my consultation, but who really remembers all of that when you are in the moment?  I was told I had to lie down on the long metal sliding table with my left arm up over my head and not move for at least 30 minutes.  During this time, my radiation oncologist Dr. M is sitting in the booth viewing the scan and starting the process to create my own personal radiation map.  The CT scan helps to make sure he knows where my heart and lungs are situated so he can try to avoid them-I certainly wouldn’t want them to just point and shoot.  On the table I was laying on is a bag filled with a chemical mixture similar to the molding foam you can get from the Home Depot.  It is in a bag so it doesn’t actually touch my skin, but it is heat activated so while I’m lying there not moving, they are also creating a mold of my torso.  This mold will be used for each treatment to ensure I’m in the same position each time.  Once Dr M. got the map of my chest that he was comfortable with, they then used these red laser lights from the ceiling to help the therapist mark my body with a Sharpie.  He then actually tattoos a dot in each one of those spots. I think I have about 7 of these marks.  This is to show the radiation team where my radiation field is (where to zap me).  They will use these permanent tattoos daily when they set me up on the radiation table. 

Part two is what they call a dry run.  This is to double check that everything is all set to go.  I had to go in last week and this was actually done in the radiation room.  There are two rooms.  One on the left and one on the right.  I will always be in the room on the left. I guess it is  all about consistency and routine.  Both have huge doors that slide open with red and green lights over them to indicate a treatment in session.  I was not receiving a treatment on that day but they walked me through the exact steps.  They had to take some more x-rays, line me up to my
 tattoos and make sure the field and the map all match up.  I do like all this double, triple checking- I would hate to have them miss!  I have even had a nightmare that I moved while being radiated and everyone screamed “NO, STOP the Machine”.  It was a  horrible dream.

Monday, the day of my first radiation treatment, came very quickly.  I was very nervous.  I got up on the cold metal table which had only a sheet and my mold on it.  I nestled right into my mold and my therapist is talking me through the process again while the lights are off and she is using those red laser lights to line up to my tattoos.  I had my head turned slightly right so I could not really see what she was doing. She has me all set up to go and before she leaves the room, she asks me what music I like.  There is a CD player in there but I forgot my music-  They had told me I could bring my own music.  But since I did not, she turns on the lights so she can see me from the outside viewing monitors, hits play on the CD player and walks out of the room saying “I think it is the sound track to Glee.  Ok, I will be right back and remember stay still”  

I am all alone in what is now the very bright cold scary room- I am not only not able to move, but I am stuck listing to a horrible rendition of "Don’t Stand So Close to Me" from Glee.  Note to self, bring your own music.  I close my eyes and try to find my happy place but can’t help the tears rolling down my cheeks into my ear.  Thank GOD this doesn’t last but 6 weeks and each session is only about 15 minutes.  I tell myself  "I can do this."  Now, what music do you think would go best with radiation? 

Monday has come and gone and I have completed my first 5 treatments and I have only 28 more to go.  It has gotten a little less scary but I am still nervous about what it is doing to my skin and my body.  I still have to finish reconstruction at some point down the line and I would hate to develop lymphodemia after all of this crap.  I have pretty fare skin and I’m already turning a little pink.  Right when I leave the treatment room I have to put Aquaphor on the area in which they are treating.  This area starts from my sternum, down to my lower rib cage, up under my arm where they removed my lymph nodes and all the way up over my clavicle.  Of course don’t forget the breast itself.  They are treating this large area due to my pathology results.  I had positive lymph nodes and extra nodal extension which means the cancer got into the fatty tissue surrounding my lymph nodes.  The clavicle area is because there is breast tissue that high up that cannot be removed in surgery and there are lymph nodes up there they want to treat as well.  They are also radiating my chest wall, near where my tumor was, just in case the cancer decided to detour to my lungs.  I have to keep reminding myself that my PET scan was clear and I received clear tumor margins and this is all done as insurance to try to keep from getting a local recurrence.

I had a routine follow up with my oncologist Thursday before I had to get my Herceptin treatment.  It is hard to believe it has been three weeks but time flies….My blood counts were “perfect” so it is good to know my body is bouncing back and that I am able to produce my own white blood cells without the help of modern medicine. Just a combination of  healthy eating, fresh air and riding my bike are all that I need.
It is Saturday which means I get two days off of working on my tan. I am looking forward to another great fall weekend of riding with my guy. Yes, I am back riding after my little mishap two weeks ago-my ribs and bruising have healed up quickly.  I remain cautious but frankly, I have to ride my bike.  It is what keeps me centered. 

I hope you have a great weekend!
Thank you for reading.

Monday, November 8, 2010

Waiting for my Super Muscles.

Since I was a little girl, I have been told by my father, time and time again, that I have special “super muscles”.  It wasn’t always what a girl wanted to hear, but to this day at age 36, my father reminds me of these so called super muscles.  I know that I am not really a super hero or have these so called super muscles– so don’t worry I have not lost all my marbles! 
My body has been pretty beat up over the past 6 months with surgery, all the drugs pushed through my system and the lack of sleep that I am still so unfamiliar with this new state of “fragile” that I am in.   I am not use to limiting my physical activities or not eating certain foods to avoid getting sick or mouth sores.  I even have been opting out of social events to avoid getting sick. 
My last visit with my oncologist was on October 28 and on that day my blood counts were all on the low side.  Since I was finished with the major chemo treatments, the doctors preferred to let my body generate new white blood cells all on its own- so I did not receive the shot to help this process.   Since I was not getting the shot it would leave me more susceptible to infections and germ.  My doctor gave me not so specific instructions, but two simple instructions: I was told to take it easy and not to play in the dirt.   I had to ask if that meant mountain biking and she said she would prefer I didn’t.  And if I got a fever of 100.4 or higher, I was to call.   I listened to half of her instructions, which mean I took it “easy” and only played in the dirt one day.  I did take my temperature a lot.  It was Halloween weekend and while I would have liked to go out and about, I opted to stay in and keep clear of large crowds. I also wanted to save my energy for the trails.

Some highlights of that weekend. 
Halloween day- I played in the dirt.

Making yummy whole wheat cinnamon apple walnut pancakes for my guy.
And carving our pumpkin- spooky

It wasn’t as hard to listen that weekend as it was this past weekend.  I have been feeling a lot better and the weather was on the cooler side but sunny and perfect for the woods.  Saturday G and I took a mellow but long adventure ride up the Aqueduct.  It is a great way for us to get our continuous pedaling and stay off the streets where it is always colder.
Sunday was the first group ride I have done since May. It was at Blue Mountain with a bunch of folks I know from the WMBA.  This is the time of year that most people come out for much more social riding.  Nobody is really in a hurry or training for anything as the race season is over for most.  When we arrived on Sunday morning the lot was full of fellow riders ready to head into the woods- it was so great!  It has always taken me about 30 minutes to warm up but this morning was a lot different.  We had about 19 people on this ride so where I usually would be right up at the front of the pack, I quickly shuffled myself to the back of the line.  I have had to let go of my ego and remember to ride within my new limits.  I didn’t want to blow the day in the first 10 minutes trying to keep up.   I am not that same girl I was prior to surgery- not yet at least.   I was riding stronger than I have been and feeling more comfortable with my bike handling skills since before my surgery. Although I had moments of brilliance (I cleaned a really technical rock garden that on good days I may only clean 50% of the time!!),  I had moments where I would go around an obstacle or dismount and walk it if I was unsure of myself.  Hesitation will knock you right off your bike.  That or your handle bars clipping a tree! 

I was starting to get tired and knew that we were almost done with the ride.  I was pedaling with G and a couple friends of mine at the back of the pack.  I know they were back there to hang out with me and I was happy to have the company.   We were not on a particularly technical trail, but it is a brand new trail so I didn’t know it all.  That is when it happened- My handle bar clipped a tree and which sent me flying and causing me to land on the end of my handle bar – right to the stomach.  I have always played hard and fallen harder, but this time it was different.   In the past I would jump up, brush off the dirt and hop back on the bike.   It always hurt but this day I was reminded how fragile I really was.   I was relatively lucky considering how quickly a fall could cause a ruckus with all the plastic in my chest right now; it could have been pretty ugly.  After a quick trip to the doctor today,  it  doesn’t appear to have done too much damage, but I am still pretty sore today.
I am more fragile than I use to be and no matter how I may look to others on the outside, I am not the same.  I struggle with feeling week and tired- it is so hard.  Every day I wake up and hope that my special “super muscles” will kick in and help me. 

None of this will stop me from riding my mountain bike- when my gut doesn’t hurt so badly, I will ride again, but I promise to be more careful.  

Here are a few shots that G took on Sunday.  

Double Wheelie.

Look out! 
Staying focused- this is not where I fell.
Keeping steady.
Most of the gang stopping for a break.

Tuesday, November 2, 2010

He's here!

I just have to share the exciting news that my sister had her baby early this morning.  Mom and baby boy are all doing well.
I am a very proud and happy aunt today! 

Happy Birthday Jesse Alexander!