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

Tuesday, June 29, 2010

Ride your bike!

No riding bikes, no hiking, no swimming…what is there to do in summer?! I miss riding my bike so much. My road bike sits in the living room collecting dust and I pass by my mountain bikes almost forgetting what it feels like to be in the woods. Sigh… That is just my reality and while it is only temporary it makes me feel a bit lost. Now that I have stitches again, I am back to all the same restrictions as I was right after the surgery. So hard to sit still but this past weekend was so hot and humid that I had an excuse to just sit inside in the air conditioning for most of it. I try to give in to this crap. Not the cancer, I will never give into that but I will submit to the fact that my body must heal and it will do so in its own time. Blah-Blah. It sounds quite boring but actually I had a nice weekend. I spent some time writing, reading, napping and even dabbled in a little water colors. I forget how relaxing putting the brush to paper can be. I am far from being a painter and will probably never share any of my “work” but do find it therapeutic. I didn’t sit inside all day.

Friday, I spent time with my uncle that was visiting from Philly and worked a bit in the afternoon. G got home earlier than usual from work and we decided to swing by our friend’s bike shop to drop off some parts for a build he is working on and visit. One of my other buddies was there as well. There is always someone to shoot the shit with at your local bike shop. Good to feel a part of it even though I am so removed. Feeling good, we decided to go out for sushi. Saturday was hot but there was still a breeze so we decided to pack up our lunch and head to the park for a picnic. We went to a local park, which does not require a lot of walking so just right for me to stick to my doctor’s orders. I enjoyed the change of scenery. My sister joined us for dinner that night. I actually cooked! Nothing too over the top but it felt good to make dinner for my family. I should have taken a photo but we ate it too fast.

Tomorrow I have a follow up appointment with Dr. B. Hopefully I am still in the clear to go to Maine. I would be crushed if she told me no. I am still very much in limbo while I wait to start my chemo treatments. Hoping that all is healing as planned this time so I can get this party started. The sooner I start the sooner I finish. My goal is to be finished chemo treatments before Christmas.

I always check out the NY Times health section and today, I see this short to the point article. Life on two wheels is not only more fun, but it’s good for you ladies!
http://www.nytimes.com/2010/06/29/health/research/29exer.html?ref=health#">

Friday, June 25, 2010

Minor Setbacks.

Wednesday was one of those daily appointments with my surgeons to discuss and view this new breakdown of tissue on my left side. The hole, while only 5 mm, was not closing as fast as we would had hoped. At this rate it would take up to 3 or more weeks to heal on its own. This is not going to work as I have to start treatments sooner than later. There is an eight week window post surgery that all oncologists prefer to start treatments. They booked me in the O.R. for the following morning. They needed to open the site up a bit and then close it with new stitches. They only chose the O.R. as it is the most sterile place in the hospital and they cannot risk an infection in my implant. This will help the healing process move quicker but again, another morning spent at the doctors and more stitches and damn, I was so close to being able to go hiking at least. Minor setback…

I woke up yesterday a little before 6 am, took my shower and hopped in the car with my sister. I had to check in at 7:00 AM in the same place I had my first surgery. Even though I knew this was not the same, it was so strange to walk into that place again. Feelings started to surface but the nurses are so fantastic there; they do such a great job making you feel settled. I had an IV started. Even though I was only getting a local they wanted to run a couple antibiotics into my system before they start. Again, just a precaution and no problem…I thought. I am chatting away with Dr. B about this and that and all of a sudden I am really itchy, upset stomach and starting to feel really sweaty. Huh?! Our conversation was so light that I could not imagine what was making me so nervous but this was different. This was not my nerves. I lay down on the stretcher and Dr. D comes in to see if I am ready to roll yet and after she notices my red chest under my gown she says, “oh you have red mans syndrome” What the heck is she talking about? Well, this antibiotic that they gave me if it is run too quickly through the IV can have a reaction where the patient turns all red and itchy. They had given me this antibiotic the day of my surgery but over the course of 9 + hours so it was run much slower. They were still running it in the normal limit but my body was pissed. I was also lucky enough to get a horrible GI reaction. Fantastic! Thank goodness I had the IV in me so they could get Benadryl in me quickly and push some tummy meds in me as well. Oh my, I felt as though I had food poisoning and this went on for about an hour until my body stopped shaking and UGH what a nightmare! Thank god my sister was with me as these are those moments in life well, you get it. At one point there were 3 nurses and my two surgeons all starring at me feeling horrible about what had happened. This was to be a quick procedure so once my body settled, in we go. I am not coming back for this tomorrow.

Since they were only using a local, I was wide awake for the procedure. Quite an experience while they set up the room, get me situated and get everything all ready to roll including choosing some music to rock out to. Can’t say it was my favorite selection of classic rock but just when my brain was starting to drift to the ‘dark side’, one of my favorite songs came on. Southern Cross by C.S.N. and right then and there the song and particularly the voice of Stephen Stills made all those bad thoughts drift away. “Rebecca, how are you doing?” “Doing just fine now, thank you”. I hear Dr B hum the song as she worked to cut and stitch my boob back together and she says, “Feel free to sing along if you like”. I was only in there for about 45 minutes or less. I won’t forget the sounds, the smells and the feelings that day in the O.R. Just another memory and experience and I will be stronger for it.

"Think about how many times I have fallen

Spirits are using me, larger voices callin'"


It is Friday and I’m looking forward to catching up on some time with my guy. No big plans but I need to rest and get myself organized a bit. We are trying to get away for the holiday weekend. I hope nothing gets in the way….I really need a break!

Wednesday, June 23, 2010

More tough choices.

Between an insane amount of doctor appointments; my sister being back in town (thank goodness as I have missed her so); and trying to have a sense of normalcy to my home life, recovery has been hardly relaxing. Even on the days that I think I can catch up on work or some rest, something pertaining to this stupid cancer comes up. It really has put so many things in my life on hold and has become priority over many other things that I thought were so important before all this started.

Last Friday I had my PET ct scan. They all have been scary tests but so far, this was the scariest. I didn’t really know what to expect. I arrived with my sister at the hospital to the nuclear medicine department. Little did we know that my sister being 20 weeks pregnant (which is very exciting) would be an issue but clearly it was a problem for them. They advised that she could not even be in the waiting room as the injection they give me and all the patients in that area is radioactive. Not off to a good start. My sister had been forced to leave the area and we were advised that I shouldn’t drive in the car with her either. Over reactive, maybe but who wants to take that chance. Not me! Great, so now I am flying solo. No big deal as once you go in the back room, nobody would be able to be with me anyway. It’s just nice knowing someone is there waiting. So they inject this radioactive die/glucose mixture into me and then stick me in a room to lay down for an hour while I wait for this mixture to go through my system and attach itself to any possible cancer cells. Hmm, how to find that happy place now? That was hard but I had to, this was the time to really use some positive energy. I mediated and said to myself, there is nothing for you to attach to as there is not any more cancer in my body…keep moving. The next step was the scan which compared to the MRI was peaceful and quiet and only took 25 minutes. The test was complete and now I had to wait until Monday for the results...

The weekend was well spent for the most part but was busy. I did manage to rest as I have no choice these days. My body demands it and I have to listen. Sunday evening was when I called Dr. B. I had an odd split in one of my already closed surgical sights. It was red and well, it didn’t look right. She met me over at her office that evening. Have I mentioned that I have the best doctors? Well I do. Dr B did not want me to worry all night and I would have. G mentioned that if this was a gash in my leg from riding my mountain bike I would not have thought anything of it but he too encouraged me to make the call. Amazing how different it is when the cost of infection is much greater. It is minor at this point but it will slow down a few things for me. Not only is my treatment going to be on hold until this heals but this means that some of the fluid that they put in my temporary implants (they are called tissue expanders and they help get my body ready for the real implants) had to be taken out. I thought I would care that they had to do this but frankly, I just didn’t. This too shall pass and I will be refilled when my body can handle it. For precaution sake, Dr B would like to see me every day to change the dressing and make sure it is healing. Regardless of the fact that I left her office after 9 pm that night, she wanted to see me first thing Monday morning.

Monday morning came quick and my mother and I started our very long day of appointments at 7:45 A.M. Not only did we have to go into see Dr B again but I had two oncologist consultations back to back. We were greeted at the front door by Dr B herself and she had a fax in her hand and a look I have not seen before….it was her good news face. My PET scan was clear! Tears welled up but this time it was for the sheer joy. This test was so important and would determine so many things for my chance of survival. While the PET scan does not pick up everything, it does give me a better prognosis. Finally some good news! We can now head to the oncologist with this important detail behind us.

I wanted to see two oncologists just to get a second opinion. Little did I know their opinions and ideas would be so different. The drugs are all the same and they will be toxic and harmful to my body. For the most part, all the side effects during the treatments will be the same regardless. I will lose my hair, be fatigued, etc. These cannot be avoided but how often I receive these drugs and how long I receive them can mean a lot for my chance of reoccurrence but also the long term side effects that all these drugs may cause me. Some opinions are that I am so young and my body can handle it and one would say, sure your body can handle it today but what about 20 years from now when you have heart problems? Lots of breast cancer patients have been given “dose dense” treatments vs. the “classic”. The classic way is every 3 weeks and has not been proven to be less effective than this new way which has only been used more frequently in the past decade. The dose dense way is every two weeks and it can be a lot harder on your body so they follow up the treatment with a shot the next day that will help you recover fast enough to take the drugs again in two weeks. This other shot is another drug that helps to boost your white blood cell count. Huh, another drug to help me take more drugs…did I mention this other drug has its own lovely potential long terms side effects? Yes, I want to be cancer free, of course and I will take the drugs that I need to take and will suck it up but is it totally necessary to potentially affect my quality of life in 20-30 years from now? That is what the second doctors concern is. She suggests the classic. This means I am potentially looking at 6 months vs. 4 months of treatments but is faster and more aggressive always better? I tend to think not but this is the new struggles I am facing. The decisions I make today can change my future in an irreversible way. I am also reminded from a friend that this doctor I choose will be in my life for at least the next 5 years. They are both very smart women but personality means a lot and my gut says door number 2…I must feel comfortable with my choice so this is not easy.

It has been 4 weeks today since my surgery and while I am making great leaps in my recovery, I am still unable to handle simple tasks around the house or exercise the way I am accustomed to. Simply put, I miss riding my bike and I miss the way my life used to be.

Tuesday, June 15, 2010

Who is that girl?

Life seems so strange these days. I really am having a hard time connecting to this girl “Reba”. Who is she and oh, what a bummer…she has Cancer! It is like an outer body experience for sure. Some might read this and think…she has lost her mind and others might read this and are able to relate in some shape or form. I have not gone crazy, just trying to figure out how to handle all the emotions while circling through this vortex. I started this blog to have the chance to keep all that cared to in the loop during my journey and to document my experience so it may help others. I realize if I sensor it too much, the journey is not real and that won’t help me in my process or others who may be relating to my story. So, my promise to me and others is no B.S... Cancer has totally ripped my world in a million pieces. I just hope I can keep the strength and courage to get through this crap (it is a bunch of crap) with a little grace and dignity.

I spent yesterday recovering from all the stimulation of the weekend events. Had so much trouble focusing on simple tasks and was exhausted. Not to mention the pains in my chest. This is just getting old. I want my body back! Patience, yes well, I’m working on that but some days it is so frustrating.

I attended the Relay for Life on Friday. It was really great to see some friends and see all the families there to support people affected by cancer. Totally weird feeling to be there and to see my name written recognizing my fight against this disease. Reba who? I walked a couple laps with my friends…slowly of course and prayed for others who struggle daily or have lost their fight. I have too many people on that list. I had high hopes to attend a party Saturday night but after an evening out, I used my better judgment and stayed in and rested a majority of the day.

Sunday was the 15th annual Fat Tire Festival. This is a mountain bike festival that is put on by the club I am involved with. Westchester Mountain Bike Association www.wmba.org this festival has a lot of meaning for me. It represents my chosen life style of the “church of the two wheels”. When I moved back east from California, I was lost in so many ways but I knew if I could just find a way to ride my bike, all would be good. 3 years ago, I attended my first WMBA Fat Tire Festival. I attended alone in hopes to find people to ride with. I had no idea that that making that choice to attend that festival 3 years ago would bring so many gifts to my life today. That day was the beginning of so many new and amazing friendships for me and opened the door to lot of fantastic opportunities in the cycling community. My goal post surgery was to attend this festival. Not ride of course but show up, enjoy the energy and see the smiles of many that share this passion or have just found a new love for riding those “fat tires”. The festival was booming when I arrived on the scene. I was so nervous, why? Will they notice that I am week and tired and not to mention the change in my body. The response from my friends (and others I hardly know) was wonderful. I received so many hugs and smiles that day. It felt so good; accept for the really big hugs. “Gentle hugs” is a term we breast cancer survivors use often. I totally get it now. Ouch! I noticed a bunch of people wearing pink ribbons…this is not a normal thing for the festival. Then I hear over the speakers the announcements for the group ride departures and what booths to check out. I hear that girls name again. “Check out the bake sale table and support our friend Reba as she kicks cancers butt.” Oh my… I think that girl is me. I didn’t know what to say or do at that point. I still don’t but I will say a huge Thank You to all of you.

I have been overwhelmed with gratitude for the generosity of others. I keep wondering what I have done to deserve all this love and support from my friends, family and people I hardly know. Everyday no matter how gray or sunny it is, there is at least one reminder and sometimes many reminders that there are good people in my world. Whether it is in the form of a card, an email, a box left at my front door, a simple phone/text message or a sweet kiss from my guy....it all has helped me get through these days.

Friday, June 11, 2010

"Inch by Inch" and the Relay for Life

It’s Friday and I am looking back to where I was two weeks ago. Lying in a hospital bed in a fog of narcotics and sadness wondering how I was ever going to feel like “me” again. I’m not quite there yet, but I have made huge distance. I have all my drains and stitches out! No more bandages; no more emptying the drains 3 times a day and wondering if they can be seen under my over-sized button down shirt. Done, so what’s next? I continue to struggle with the everyday activities. Still not allowed (probably couldn’t do it anyway) to lift anything heavier than a gallon of milk. My fruit bowl is more than that! I can not quite get a shirt over my head but I can wash and brush my own hair. Yay me! I am allowed to take mellow walks. “Nothing that breaks a sweat and just keep walking past your bikes” is what my last instruction from Dr. D was. Even if I was allowed to ride, I don’t think I could reach the handle bars. I have lots of daily stretches and exercises to do to get my movement back. They are so hard and leave my arms feeling limp. My left arm is the worst as that is the arm they took all my nodes from. “Inch by inch”, I will get there. I went into this very strong and while the surgery took me down, I’ll get it back.

Relay for Life: Another reminder that I’m not alone and many people are affected by Cancer. Friends of mine play a huge part in a local fundraiser to support The American Cancer Society. It’s called the Relay for Life and it’s in Yorktown, NY tonight. I meant to put this up on my blog earlier but well, it is still not too late to attend if you are in the area. As a cancer survivor, I plan to attend this event this evening and do a lap or two with my friends team and their families. Praying for others is a huge part of my personal progress and I find that to be true now more than ever.

http://main.acsevents.org/site/TR/RelayForLife/RFLFY10EA?pg=entry&fr_id=20948