With time...

Today, I was given my final Herceptin infusion.  With time, I am hoping this image will be a very distant memory. 

"Normal"

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”.  

Thank you for reading. 

S.M.

Photo courtesy of ~Aria~ Flickr Photostream.

Race report and Timelines.

G and I woke up last Saturday morning and headed out for our morning pedal.  Nothing too intense- just a short spin up the OCA to get our legs to open up a bit and make sure the bikes were race ready.  I was careful to not overdo it the week prior.  I just do not have the same recovery time as I used to and have not even figured out what is really too much.  

Old Croton Aqueduct -OCA

True to form, my Herceptin treatment made my knees and ankles achy and I just felt sluggish.  I am sort of getting used to it but it doesn’t make it any easier.  I cannot wait until my last one on the 18^th!  In the meantime, I just hoped that the next morning, I would feel better.  

Taking a rest at the framers market on our way home.

Some of our yummy treats for the house.

Apricots were off the hook!

Racing not only involves a lot of physical preparation but it takes a lot of time and energy to make sure all the bikes, gear and nutrition are all in order.  This has to be done the day/night prior since we would be up at 5:30 Sunday morning.  I usually like to also plan my dinner well so I eat the right things and early enough.  I don't want to eat too late or I feel too full the next morning to eat my breakfast.  

The alarm went off Sunday morning and G and I both stood around the coffee machine.  “I don’t miss this part of racing” he says.  I grumbled in agreement as I patiently waited for my morning brew and assessed how I was feeling.    In the past years, on race day mornings, I would wake up all excited and do a little chant/clapping thing saying “It’s race day, race day, race day”!   Well, that did not happen this Sunday morning.  In fact, I really was wondering if I was going to make it to the start line let alone the finish line. 

Gear and bikes were loaded in the car and we were ready to head north.  We made great time, rolled into the lot and I realized at that moment-it’s on.  It is officially race day.   As always, it is great to see the familiar faces.  The Dark Horse promoters always put on a top notch event and draw a packed house.  It helped to feed my energy and get my butt in gear.  We signed in, kitted up and decided to warm up a bit.  The sun was already blazing.  It was going to be a hot one!  

The race started off with a 3 mile fire road to break up the field a bit.  They started the women single speeders with the men single speeders but I quickly fell to the back of the pack.  I settled into my spin and just tried to get my body into a groove.  My knees hurt and legs were a bit heavy but overall I felt decent going into the first single track.  It wasn’t until the second half of the first lap that I started to really question my choice of racing my single speed for 40 miles.  It was at mile 14-17 where most of the punchy climbs were and my legs were just not opening up.  I got to the feed zone after the first lap and took a few minutes to regroup.  I did not stop at any of the other water stations so felt I needed to take an extra minute.  I almost stopped too long because my mind started questioning my body and I was pretty close to calling it.  I scanned the sidelines and there were racers that had already given up and they were not going back out.   I started to get myself set to go and I heard a voice yell out “Get going Reba”. It was my friend Jocelyn.  She was not able to race this day due to her own medical issues.  I owed it to both of us to get back out there so off I went.   

That second half was a huge struggle for me.  I did seem to find a lot of strength in the fact that last year, I was on the couch sick as a dog from my chemo treatment and I could not even make it up there as a spectator.  I started to really feel the heat and my left arm started hurting something awful.  By mile 30, my right foot started up with the neuropathy side effects and my hands went numb.  It was a real push to get myself to that finish line but I did it.  It was no record time for me but it was not my worst performance either!

I am grateful that I was able to race and I always have a great time with the whole scene.  But, I think I will be taking the rest of the season off of racing and will just try and enjoy riding my bike...maybe I'll do one more.   

Monday afternoon was my endometrial biopsy.  I was still exhausted from the race and my body was hurting all over.  I was ill prepared for this procedure.  I was told it may be uncomfortable and pinch a bit.  Really? Okay, I can handle that.  Well, let me tell you.  It was outright painful and caught me way off guard.  Once the doctor was finished, I had some cramping and bleeding for a few hours but nothing too crazy. It was just that 10 minutes of hell that I will remember for a long time so I hope I never have to do that again.  Results may be a week or two but I am really not worrying about it.    

So, this has been a long week but the good news is, G and I are heading up to Maine for the weekend.  Cooler temperatures, casual bike rides and good eats!  Last time we went up there, I couldn’t do as much because I was still recovering from my surgery.  I have to look back at these timelines so that I can remember how far I have really come. 

Have a great weekend!

S.M.

Have I lost my edge?

I am starting to believe that I might just like training more than I like racing or maybe I just enjoy riding my bike without all the pressure of a good performance?  I am sure it is a combination of all of the above but something feels different for me this year.  I am having a hard time getting in the ‘game’.  I know a lot of you are thinking “give yourself a break considering all that you have been through this past year”.  I hear that and I understand that but have I lost my edge?  Will it come back?  I keep wondering when I’ll get my speed back and when will I feel like I can get out in front again.  

I have not done any races since the Bearscat50 and maybe that was a mistake.  Hindsight, I probably could have used the extra intensity that racing gives me.  But after some thought, I decided I didn’t want to forfeit my Saturday rides to race on Sundays.   It seemed more important to me to just ride.  This past Sunday, G and I headed up to Stewart to pre-ride the Darkhorse 40 race course.  We knew it would be marked, so we decided to invite our good friends along.  They had never ridden there and since the course was marked, we would not get us all lost. They do not race but love riding new trails.  They are also a lot of fun to be with.  While riding, Kim and I had a conversation about how great it is to just be out riding and how the racing will come back.  Her conclusion was - This year is just all about enjoying the ride and next year will be my season to go big again.   She is probably right about that.  I am truly still recovering from the years events.  I wish the only thing that I had to do these days was focus on my fitness but the reality is, I am still trying to pick up the other pieces of my life that got shattered because of cancer. 

The Darkhorse 40 is this Sunday.  As I mentioned, I will be racing it on my single speed.  I have been riding the SS almost exclusively since it was built up last month.  It is probably the most comfortable fitting bike that I have for this type of race course.  But feel free to ask me again at the end of a 40 mile race…..I know that I am ready for the distance of the race but it is a much faster course then the Bearscat50 was.  It it is all going to depend on how I feel that morning.  I have to get my Herceptin treatment this Thursday so there is just no telling how the days following will go.  

So it is off to the races we go- Wish me luck!

S.M.

Trying to find balance: is it ever really possible?

Out of my handful of doctors, I have/had a Dr. A., Dr. B and a doctor D.  I have been joking all along that all I was missing is a Dr. C. 

Well, not any more- Meet Dr. C. my new GYN that has taken over as one of my many watchful eyes.  I had a follow up appointment with him last week to go over my most recent ultra sound results from the end of last month.  I had no reason to be overly concerned, as I had received a copy of the report from my oncologist when I went in for my Herceptin treatment.  She didn’t seem too worried.  Her response was matter of factly-“they are going to continue to torture you with these follow up tests.”   She then wrote out a script for yet another ultra sound follow up. 

She was right about the constant torture of being poked and probed, because Dr. C. is a bit concerned with the most recent findings.  Among many potential side effects that Tamoxifen can cause, the thickening of the endometrial lining is one of them.  In a rare case this can lead to endometrial or uterine cancer.  This is one of the things they are monitoring when I get these ultra sounds.   The new findings show mine has almost doubled in size in 3 months.   This could be my body just trying to adjust to the Tamoxifen or it could mean that my body is up to no good.  

I am scheduled for an endometrial biopsy in two weeks.  I really wish I did not have to take this drug.  I would be lying if I told you that this biopsy did not scare me.  Frankly, it is causing me a bit of anxiety to have to go in for this biopsy- The last biopsy I had on April 13^th of 2010 set off a whole chain of events, so I am still a bit gun shy if you know what I mean.   

  

I really should not complain because none of this is really hindering me physically, so I am able to work full time again and ride my bike as much as time permits.   G and I have been enjoying the summer and have had some awesome rides trying to get ourselves ready for the next big race.  The Dark Horse 40 is less than two weeks away and I have officially switched my entry so that I will be racing my single speed.   

G took this photo during a great day in the woods.  You should be able to view larger if you click on it. 

My sister has been down from Maine since the end of June and will continue to be here until the first week of August working her summer job.   It has been so awesome getting to spend time with her and my nephew Jesse.  I feel so lucky to get this extra time with them both.   Last year was so different for us since she was pregnant and I was sick or recovering the whole time.  

Me and Jesse -4th of July

 

Despite these new findings and feeling like I am still stuck in the ‘cancer vortex’, I have found comfort in the fact that those days are becoming fewer and farther apart.  I am not immersed in it all every moment of everyday.   Still trying to find that balance.   

Taking in the sunset together on the Hudson River.  

Recovery and Updates.

The past couple of weeks since the Bearscat  has been all about rest and recovery for me.  I still rode a little but not with any real intensity.  I had  caught a nasty head cold the week following the race, so I tried to take it easy and honor my body.  I have made my body work extra hard this year and I owed it a little break. 

Feeling well rested, the break is over and I am back to training with some focus on my speed.   This was the least important thing for me during the past 5 months.  I have put the base miles in my legs so now it’s time to ramp things up a bit. 

During this recovery period, our local mountain bike club- WMBA- had their annual Fat Tire Festival at Blue Mountain Reservation in Peekskill, NY. I look forward to this event every year.  I was unable to ride last year, as I was only 2 weeks post op and could hardly move. So this years attendance meant a lot more to me than normal.   

I had volunteered to lead the woman's ride again.  My friends Helen and Kim helped as we took 12 women into the woods.  For some, this was their first time on real single track and rocks were not something they considered 'rolling'.

Just look up and don't hit the brakes! 

And away she goes....

Helen took some photos, while Kim and I stood at the base of this rock shouting out encouragement to the beginner rider.   I'm so glad that Helen caught this moment because that is what leading that ride is all about for me:  Giving at least one woman the confidence on her bike that she may not have gotten on her own.  She did her first rock roll down and I was so proud of her.  When I saw her later on that day at the festival, she was still smiling. 

 

 

YES, she did it! 

We were all smiles that day at the festival.

What a great day!  ♥

I am feeling pretty good these days.  I have been hearing from a lot of people comments like, “you look so great”, “wow, you would never have known...”.   While all those complements feel great, I have to remind people that it was a lot of work to get my physical self back together.  The hair was going to grow, that was a given but the extra chemo weight and building up my strength again was all me.  I had a lot of help and motivation from G and I still can’t say enough good things about the pilates program through Body Wise Connection: what Joy has done for me has been really tremendous.  Now if I could just have the emotional healing catch up to the physical healing…..

It seems all my 3 month doctor follow ups hit at the same time.  It started with a follow up appointment with my breast surgeon.  I am happy to say I have nothing to report there. All looks good- phew.  The following week I had my routine Echocardiogram and according to the tech “you have a beautiful heart”.  Aw, shucks! But seriously, this is a very good thing to hear.  The Adriamicyn (the red devil chemo drug) and the Herceptin both have a very high cardiac toxicity so hearing those words is a relief.  It also means I was clear for my Herceptin treatment last week.   I did not have to see my oncologist so I was in and out of the chemo suite as fast as they could move me.  The next follow up was last Friday with my plastic surgeon.  All looks good there as well.  We spoke mostly about the next steps in the breast reconstruction process- no, I am not done!  We discussed what the procedure would be like to exchange my tissue expanders with the silicone implants. She even let me hold some sample implants to see what they feel like.  They are so much softer than what I have now and I can’t wait!  Well actually, I can wait.  I am choosing to wait until October to have my exchange surgery for two main reasons.  First, it is summer and I do not want to be off the bike again.  I lost last summer because of surgery and chemo and I am not willing to give that up on purpose.  Second, the longer my skin has to heal from radiation, the better chance I will have for a successful surgery.  There is always a 50% chance that the new implant will not work out for me because of the radiation.  I knew this but it is still a tough statistic to swallow.  I am just keeping positive and I will continue to take this whole process one step at a time. 

In the meantime, I plan on continuing to enjoy my summer. 

S.M.

The race is in the books and for sure in my legs!

I had my own expectations for Sunday but I was careful not to set them too high.   My major goal on Sunday was to show up at the start line and race my own race to the finish: mission accomplished!

It felt so great to be at the start line again with all the familiar faces.  This particular race, unlike most of the races I have done, did not break off into age groups or separate categories.  It was what they call an Open Class.  That means I lined up next to everyone from the pro-racers as well as all the strong Cat. 1 racers and intermediate racers.  I was not intimidated by the competition as for the most part, they were all just happy to see me there. The encouragement that I have received from the majority of  ladies has been overwhelming.

This time at the starting line, something felt different for me.  Before my diagnosis, I would line up at the start of a race feeling more pressure on myself to have a good result.  That pressure has shifted probably because my definition of a good result has changed.  I set out on my race on Sunday not really caring about what place I finished, but instead my focus was on finishing the race feeling strong and enjoying the ride.  It was so hard not to give it some extra gas and chase the masses.  It took some discipline on my behalf to hold back which also meant I was solo for most of the race.  I had never done a race this long and frankly, I had no clue if my body would fail me that day.  The night before I had G set up my cycling computer on my bike.  I normally only use one for riding out on the road but I needed a way to time my nutrition and gauge my timing so I would be sure to make the time cut offs that the race promoter put into effect for the safety of the racers.  The first cut off was 4 hours at the 25 mile mark.  I pulled into the 25 mile mark feeling surprising strong and in 3.5 hours.  I was pleased.  While I lost some time on the second half of the race, I just kept moving forward.  As my friend Jocelyn said “Just keep moving forward no matter what the pace”.  I must have used that as a constant mantra after mile 35.  Around mile 42 I had some extra pep in my pedals and I am still not sure if it was because I caught up to two girls or if it was the motivation to be finished with the race:  7.5 hours is a long time to be on your bike!

I was feeling the fatigue on the climbs toward the end but I still felt I was holding my own in the technical.   As I approached mile 46, I knew  it was mostly all fire-road.  I knew it was coming, but the second time around it seemed to go on forever!  I started to get some cramping in my inner thighs and my neuropathy had settled into my right foot.  "You are almost there Reba…just keep pedaling"- I told myself.  I inhaled some energy blocks and water and asked my legs to hold on for just a couple miles longer.  The fire road ended and I was on the paved road toward the finish line.  I could see the people all there and I could hear them cheering.  I could hear my name and at that moment I could no longer feel the pain in my legs or my foot.  I only felt the huge smile across my face and the tears: I cried when I crossed the finish line.  I was so proud of myself at that moment.  I have overcome so much over the past year that finishing this race meant more to me than I could ever express in words.

Smiles and tears crossing the finish line.

It is so good to be back in the ‘scene’ again.  Next big race is the Darkhorse 40 on July 31.  I may actually race that on my single speed.  Until then, I will just keep enjoying the ride.

Thank you for reading and for all your faith in me.


S.M.