I am reminded how quickly it can happen. You feel great, your life seems to be going along
nicely and wham…you over do it!
My week leading up to my long weekend in the Pilates
studio was jam packed but I felt great. I was 'handling' all of it. The workshop was fantastic-best one yet. A lot of work both physically and mentally. That following Monday rolled around and I was not only exhausted but
I had that heavy feeling in my chest and the coughing began. Next it was the fever, runny nose and did I
mention the cough? I have not been this
sick from a “cold” in a long time. I was
down for the count all week. No work, no
rides, no studio time, no fun. While I
sat on the couch feeling sorry for myself, I remembered all those days I was so
sick from chemo that I could hardly walk or open my eyes without wanting to
puke. Those days have passed for me and so
would this. Oddly, I feel lucky that it
is just a bad cold…I do really hate being cooped up though. Especially when I had a plan to catch up on
some riding during the week and long rides for the weekend.
This past weekend, we were reminded that it is winter and there was no way I was
heading out in that weather on Saturday.
I had hoped to head up to Stewart to try to get some longer miles in but that was not going to happen. I did manage to convince G that I was feeling
well enough on Sunday to do a quick lap around Graham. It was windy and cold but the trails were in great shape. Amazingly, my legs felt so strong but my
lungs, not so much. My guy had to rein
me in and head me back to the car. I did
not want to go home but I know it was the right decision. He reminded me that I always push myself too
hard and it is not always the best thing for me. I would like to tell you that I do this
because I want to live my days to the fullest since my cancer diagnosis but the
reality is, I lived this way well before my diagnosis. I
still do not think that is wrong, but I do now consider the long term effects
of taking on too much. There will be more time to
pedal .
Tomorrow is Valentines Day and if all goes as planned, G and I will start our day with a morning pedal in the woods before work. Now that is my kind of romance!
I thought I would start off with getting my medical update out of the way. I received my endometrial biopsy results back and the doctor said results were “normal”. Ahh, yes- I can breathe…. I was trying really hard not to think about it and I knew in my heart my luck could not be that bad. (I do say that with a bit of caution). My doctors will continue to make me do follow-up ultra sounds but “normal” was music to my ears this week.
So, life carries on as “normal” or at least my new version of normal. This is a complicated word for me and there is no simple definition for someone young who has had cancer or lives with a chronic disease. I am still trying to figure out what is my “normal” supposed to really feel like. I always hear others in similar situations use the phrase, “new normal”- but I struggle with that. Things are not the way they used to be before treatment that is for sure. Do I want that old me back? You bet I do- without the cancer of course.
Mind and Body.
Is my body normal? Not even close. I have a scar under my left armpit and an indent from where they took a chunk of lymph nodes out. 18 to be exact and while the scar appears to be getting better the indent it left behind is so big that I can not shave properly. Trivial, yes- but certainly not normal. I still have cording under my left arm that some days forces pain down my arm to my wrist. If it is really bad, it shoots across my chest taking my breath away in pain. It is better than it was, but the pain is still there. I am hoping after my exchange surgery, it helps relieve some of the extra stress there. I have X ‘s where my nipples used to be. I will always have fake boobs. While that may be fine for some women, I feel justified to say that it is much different than making the choice to have breast augmentation. It is not the same thing by a long shot. My body is fighting back every day to filter out the treatments and the after effects of the past year. It wants to feel strong again; I want to feel strong again. But sometimes the odds are against me and I have to give in and rest. I guess there are lots of people that can complain about aches and pains in their knees, ankles and arms but mine are all reminders of having had cancer. A little different than the aches of the aging process, because it reminds me that it was trying to kill me.
Is my mind normal? Not sure really. It is still a bit foggy from all the drugs and I think the Tamoxifen is not helping that part of the side-effect recovery either.
Worry- I have a lot of that and it hits me randomly throughout the day. Sometimes it scares me enough to wake me up in the middle of the night. I have to assume that most women my age are not worried about the same things as I am. I would love to wake up in the morning and go about my day without the fear of a recurrence ever crossing my mind- it does. Or question if I made the right treatment choices- this is a hard one for me. I get envious, or dare I say jealous, of what others appear to have that I want: Marriage, children, or the overall feeling of immortality that I use to have. I want to complain about the little things again.
“Didn’t this experience make you feel grateful?” I have had people ask me that among other loaded questions. I guess I would rather have people ask me questions than ignore the subject with me completely. I was pretty well in touch with my sense of gratitude before my diagnosis so the answer is NO, Cancer didn’t really make me more grateful, but I do look at things and people a lot differently.
My body is for sure not a normal 37 year old body. But yet, I am still better physically fit then some that have not been through major cancer treatment. My mind does not think like a normal 37 year old woman. My relationships are no longer the same. Some have strengthened and some have weakened almost to a failing point. I have really learned to know who I can count on and who is just outright unreliable. This path has introduced me to amazing new people that have offered me so much generous support in ways I never imagined- life changing support. I have seen and felt what true love is really like. So, yes...I have many things to be grateful for.
In April of 2010, my world got hijacked and it will never be “normal’. Most of this I have learned to accept but acceptance doesn’t mean I have to like it!
For those that know me best, I am not looking for pity, but rather understanding. I write this not to make it seem like I am bitter or angry, but to let people know that I am still here just trying to work this all out-it is my great human struggle to make sense of all of this. I may appear back to “normal’ in your eyes, but from this view, I will never really be “normal”.
It was April 15, 2010 and my sister was here on an extended business trip. We had walked into town for some lunch and as a distraction. It was two days after my biopsy and my mind was off in a million places. My eyes wandered around the neighborhood taking in all the beautiful spring colors. The cherry blossom trees were magnificent last spring. I had to stop to take this photo- it carries with it a memory that will stay with me forever. This was only a couple hours before I would receive that phone call from DrB. The phone call that would change my life as I knew it. I was so grateful to have my sister with me that day.
Thank you to all my friends and family who have been there to support me during this past year. It hasn't been easy. G, my special guy. I would not have made it this far without you- Team G n R rocks!
Despite the predicted snow this past weekend, G and I manged to get 5 1/2 hours of road riding in. Saturday was a chilly start and we even saw some snow flurries! Once we got moving, we warmed up and were able to get in just over 33 steady miles.
On Sunday, I was invited to join some fellow mountain bike racers for a group road ride. It was so awesome to have the invite and it made me feel really great to have this particular group even think of including me. I had to graciously decline as I am not feeling quite ready for a ride at a group pace. I'll get there, but it is so important for me to take it slow right now. I still got out there on Sunday and finished another 37 miles with my guy. He is so encouraging and helps me in more ways then he even knows. I could not ask for a better training partner.
I felt really great both days. I was a little more comfortable and steadier on the Sunday ride. My legs felt strong. My heart rate was steady and my lungs felt clear. This is all very promising that I will be back up to speed in no time. As much as I miss riding my bike in the woods, being out there on the open road made my head clearer than it has been in weeks.
My arm felt alright....Not great, but not horrible. I need to build my strength up in my arms again so I can lean over on the handle bars for long distances. I am still in physical therapy and it seems to be helping my arm cording a lot. I wear a compression sleeve while I'm riding. According to my therapist, I show no signs of lymphedema but she suggests that I wear the sleeve during strenuous exercise or heavy lifting. I am not sure I completely believe that it will prevent me from getting lymphedema but as long as it's not hurting me, why not?!
I have a busy week ahead. It seems like my cancer treatment/follow up care is still a full time job. I already had P/T today and will have my second session on Thursday. Tomorrow morning I have to head back to the dentist to have my second filling replaced since I ended treatment. I have read of some patients having horrible teeth problems post treatment. I just didn't expect it so soon! Actually my teeth and gum's looks great so it could just be a coincidence that two fillings broke within two weeks....I go straight from the dentist to my 6 week follow up with my radiation oncologist. Hard to believe I have been finished radiation for 6 weeks already! My skin looks good and I feel good so I don't anticipate this being a long appointment.
For the most part, life is coming back to a sense of normalcy for me. I still have moments of What the hell happened to me?! but I am sure I always will. It will hopefully fade away with time.
It is Valentines Day and at the risk of sounding totally corny- I am so grateful for all the love in my life. Family, friends and of course my guy. I could never have done this without all of you. I am a lucky woman.
It is the final countdown of my radiation treatments. I have 5...yes only 5 more radiation treatments left. I am exhausted but surprisingly finding the energy to get a lot done in a day. It must be the excitement that this huge part of my treatment is almost over. I might be over doing it a bit since I passed out on the couch last night before 9 pm.
The treatments are going as planned. About two weeks ago, my skin started to develop an itchy rash on my sternum and my collarbone. This is to be expected and Dr. M. does not seem to be too concerned. If my skin starts to bubble and peel, than we up the medicine to something stronger but for now, I will keep using this steroid cream and Biafine. It seems to be doing the trick and my skin remains status quo. I was advised that the skin could get worse after I stop treatments. I guess the effects of the radiation keep going and then the skin begins to heal.
Like most, this has been a hectic month. I have had all my routine Doctor appointments and then some. I have been able to work more now that I am feeling better but I still get tired quickly. We have been more social with holiday parties and G had a birthday last week.
It was too cold for a ride so we went for a hike instead.
We went out to eat at the Red Hat - Make a wish G!
Even thought we did not ride on G's birthday, we did manage to get some really great riding in last weekend. Saturday we ventured up the OCA for a two hour pedal. Always good for my endurance training. Sunday was a surprisingly balmy 35 degrees and after a great nights rest and relaxing morning, we headed to Graham Hills. I felt steady for the first time in a while and G and I had a great time in the woods.
Christmas is days away and I almost finished my holiday baking and trying to tie up some loose ends for the big day. We plan to spend Christmas Eve and morning with G's family in the city and then Christmas afternoon at my fathers. It took me a while to get into any sort of holiday spirit but baking my traditional and not so traditional holiday goodies helped.
Oatmeal Cranberry cookies- my new favorite.
Mini Zucchini Breads- apparently they are delicious
I had good intentions of getting holiday cards out....sorry in advance, but it didn't happen. I am grateful to have so much love in my life. Thank you to all of my family and friends who have helped me during a very difficult time in my life. Especially to my guy for all you have done for me this year. It has not been easy and I'm sure at times I have not been easy to deal with. I could not have done this with out you.
So, the final countdown of this phase of treatment and 2010 is near. Merry Christmas to you and your families and here is to a healthy and peaceful new year!
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!
Last Friday was the best I have felt in a week. I have yet to feel 100% since surgery, but I have come to terms that it may not be for awhile. As I get more adjusted to the new me, I start to figure out my limits. And, try to give myself a little push past them. I've never been one to stay within the limits.
I started off Friday morning with a very productive physical therapy session. My therapist is helping me work out the cording in my left arm. Cording can happen after having a axillary lymph node dissection, which I did. It limits my range of motion in my shoulder and causes a great deal of tightness, as if I have a tense rope that starts under my armpit. It can cause pain when I'm doing certain activities so it needs to be stretched. I am hopeful for a full recovery from this.
On any given Friday evening, you can pull into the parking lot at Graham Hills in Pleasantville to find a group of mountain bikers ready to head into the woods to get their ride on. I've missed these rides. It has been over two months since I've been able to ride my mountain bike in the woods. With the clearance from most of my team of doctors, G loaded the bikes on the car and we headed for the woods. I didn't really know who was going to be there at the trail. Oddly, I was nervous. Will I still remember how to do this? Will my arm hurt? It has also been a while since I've seen a lot of these guys and there is always a bit of social anxiety that comes with this diagnosis-I've felt a bit isolated these days. As people arrive and I see their huge smiles and realize they are just happy to see me, it was then I started to feel more comfortable in my skin. As I'm gearing up I hear " Reba, are you here to ride?" I'm sure gonna try!
G captures my first dirt ride.
I have a long way to go before I get back up to speed and confidence but this was a good start.
On Saturday G and I headed up to the Peekskill Celebration for the Dragon Boat Races. My mother met us up at the train station and we headed over to meet my teammates for the day. The Yin Yang Dragons- Great group of random people out to celebrate life. Some folks I knew before from other activities and ironically, there was a couple there that I know from mountain biking!
Getting ready to get in the boat- Holding my rose proudly for the Cancer Awareness Rose Ceremony
My mom and me
The Dragon
Trying to figure out if the roses will make it through the race?
Paddling out to line up
The race
Post race, the boats come together for the Cancer Awareness Rose Ceremony. Quite emotional with bag pipes and all.
View from the shoreline
Roses now float away as a symbol of those that have lost their battle or continue to fight to beat the cancer dragon.
Paddling back to the dock.
Safe and sound back at the dock- phew!
Me and my beautiful, strong and courageous friend J.
This was a great day. Thank you to my friends for inviting me to paddle with your team and to be able to participate in the Cancer Awareness Ceremony. This experience will be with me forever and will remind me on those dark days that there IS life after diagnosis and Cancer will not define me or defeat me. Also, thank you to my mom and my guy who came out to support me.
I was so tired after this event that I ended up passing out on the couch for a 2 hour nap before joining up with my sister. This was her last weekend in town before she heads back to her real life in Maine. I am going to miss her so much I have trouble even thinking about it.
I had planned to try and ride in the woods again on Sunday morning, but my arm hurt too much. I didn't want to over do it. So we decided to hit the North County Trail again. These are great endurance rides for me and are way less hard on my body. I was very tired after the full weekend of activities but so grateful for feeling well enough to participate and enjoy the fantastic weather and people.
So, am I totally bald yet? I still have baby bird like fuzz on my head but yes, I'm almost completely bald.
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 tomorrow...it 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!
