A Final Word

So how do I close a journey that has consumed so much of my life?  I have been putting off this final post for a while but it's time to really close this chapter of my life.  Like most things in life, although you move on, there is part of you that will always be with you.  Of course I have my scar on my belly that gets smaller and smaller.  But I also have changed as a person as well.  As much as I hated hearing the advice, "Ride the Wave" a year ago, it has become a mantra for me.  I have developed more patience and become more flexible and less scheduled.  Of course I have learned to appreciate all the people and things in my life much more than I ever have before.  I think I have always tried to live life to the fullest but now, those words mean so much more.  My grandmother used to always tell me, "It's later than you think."  I really get it now.

There are lots of things that haven't changed either.  I still love to be outside and active.  I still don't enjoy reading, no matter how much I try.  My tastes in foods haven't changed either.  I still love Bruce Springsteen and Van Morrison.  And of course, I still love being near the water.

So, now it's time to to move forward but never forgetting where I have been.  Time to get ready for whatever else will come my way in life, appreciating all the ups and downs that will come.  And most importantly, time to really enjoy life again.

Thank you for all the support I have received over the last year.  Knowing that help or a smile was just a phone call away made traveling this journey so much easier.  I will never forget the support and I am so grateful for the friendships that have grown even stronger.

See you at the pool!

Strolling Along

Well, it's been almost two weeks since my surgery.  I apologize for not updating the blog as planned.  The last 2 weeks didn't go as I had planned!

My surgery went extremely well despite having to be at the hospital at 4:45 in the morning.  Everything went well in pre-op.  I was rolled into the OR, moved to the table, felt a sharp pain in my IV and I was out.  Next thing I knew I was in recovery feeling pain where my ostomy once was.  I actually asked the nurse more than once if the surgery was successful.  She assured me I no longer had an ileostomy and all was well.

Upon arriving at my room in the hospital, the nursing staff informed me that I had to walk to my bed.  The doctor wasn't kidding that I would be up and moving around as well as having clear liquids the night of surgery.  I ran into a small issue not being able to urinate so I ended up with a foley cather before the day was over.  I wasn't happy about this as I couldn't wear pants!

The next couple of days were filled with ups and downs.  Sometimes I felt great and other times I had pain or just didn't feel well.  Finally on Sunday morning around 3 am my bowels started working and well, didn't stop for several hours!  I knew it was going to be a challenge to learn to go potty again but I didn't think it would be that bad.

Despite being able to move my bowels, I was having lots of trouble feeling bloated and having pain after eating.  I called my distended stomach, lovingly, "Budda Belly".  Budda Belly would come and go over the next couple of days.  It was a bit disheartening for me because I thought I was going to go home on Sunday.  Finally on Tuesday evening I negotiated a deal with the surgeon regarding how much I had to eat without pain medication to go home.

Finally on Wednesday afternoon I was discharged from the hospital.  I was so happy to go home and sleep without interuptions and eat good food.  The first order of business upon arriving home was to take a very long hot shower.  Ahh, the shower felt so good.  In fact it felt so good that I then took a 3 hour nap afterwards!

Thursday I was a bit sore and happy to just sit around and watch TV and play silly games on my iPad.  By Friday, I was up and moving around and feeling well.  I ran to the store to pick up some clothes to fit my Budda Belly and then I was off to the Pirates game.  Each day I was feeling better and better.  My biggest challenge was to not do anything.  You see, I am not allowed to do anything by stroll until the beginning of August.  That means no cycling, yoga, kayaking, swimming or golf.  All that is left is to stroll.  I can appreciate the restrictions as to avoid getting a hernia but I don't know how to fill my time!  Most of my activies are physical in nature and being held back is killing me!

Tuesday I went back to work.  I know it was less than two weeks since my surgery but I was going crazy at home.  If I can't do physical activies, at least let me use my mind!  I was back in the swing of things very quickly at work.  Thankfully nothing blew up in my absence.  By the end of the day, I will admit I was tired and required a long nap when I got home but it was good to be amongst the living again.

So, now I just have this hole in my abdomen that has to heal.  The surgeon left it open to close.  They tell me it will take about 2 weeks to close.  Until it closes I can't go in the water so I'm anxious for it to heal over.  I am going to Jamaica in just 2 weeks!

The journey is really winding down.  Yesterday I was even having trouble believing that at one time, I had an ileostomy.  I have my post op appointment with my surgeon on Monday and when I return from Jamiaca, one last visit with the oncologist.  I'm hoping he will give me the clearance to have my port removed and really be done.  It's hard to believe the year has gone by.  At times I felt I just couldn't see the end of the tunnel and now I can't believe it has been a year already!

Ready at Last

Well, tonight is the night. I wrapped up everything I possibly could at work. My apartment is clean and the laundry is done. My bag is packed. The only thing left to do is to relax and get to bed early. I guess this could be a time of reflection of the last 11 months but it's not. It could be a time to look to my life ahead but it's not. Tonight is about just relaxing and resting for the days to come. There will be plenty of time for thinking. It is hard to believe that this journey is coming to an end. It feels like just yesterday I was diagnosed. I know so much has happened but to be honest, I don't remember much. I guess I can blame chemo brain! I am sure the next couple of weeks will pass by and not remember much either as I am back into the swing of things. I will have a guest blogger for a few days until I am back home and staring at the four walls of my apartment wondering what to do with myself while recovering!

The Final Countdown Begins!

Yesterday was an interesting day.  I can't think of a better word to describe it without being negative and that's just not my style.  I had a test called a Gastrografin.  It was awful.  I don't wish it on my worst enemy.  The test was uncomfortable and the after effects were really not pleasant.  I won't go into details but it made it seem like a colonoscopy is a walk in the park.  On the positive side, I have no leaks in my intestines so I am ready to have the reversal!

After the test, I went to see the surgeon for my pre-op appointment.  That appointment went very well.  It was very exciting for me.  There is no prep for the surgery which is great.  Clear liquids for the day before surgery but I can handle that.  Rita's counts as clear liquids!  I will be in the hospital 3 nights and will be able to return to my normal activities as I feel up to it.  They said they would approve me for 4 weeks off from work but you know I will be back in less than two.  I can't sit home that long.  I will have to take care of my wound where my stoma was.  They let it close on it's own so I will have an open wound for a week or so.  I'm sure it will heal quickly.

Life after surgery will be interesting.  It will take a couple of weeks for my body to get used to things being back to normal.  The surgeon told me to be patient and kind to myself.  He is sure in a couple of weeks that things will be normal and I will be on my way with my usual busy life.  I have to modify my diet for the first two weeks with low fiber diet.  There could be some swelling and he doesn't want anything to get stuck like the last time.  Of course that diet doesn't help with making going to the bathroom normal but I will deal with it.

So, now it's just 2 weeks away until my surgery.  The countdown has started (well it started a while ago) but the official countdown has started!

Cancer Free!

I received great news today.  I am officially cancer free!  I beat cancer!  I am a cancer survivor!  The news hasn't quite set in yet.  I worried all day today waiting for my results.  When my doctor said the CT Scan was clear I was so elated.  Words just can't express how I feel yet.  Now just one little surgery and this journey will come to an end.

I have been trying to get back to my old self.  I played 9 holes of golf last Thursday, went on two bike rides this past weekend and swam this morning.  Granted, I am really out of shape and it's going to take me a while to get back where I was but I am happy to be doing my activities again.  I can not wait to kayak on Wednesday morning.  I love to be out on the river early in the morning when all is quiet.  So exciting.

I do want to spend the next three and a half weeks before surgery trying to get in good shape.  After all, I have to be able to beat the grannies around the hallway.  I can't let them beat me!  Besides that, I think I will just do better under anesthesia and recovering if I am in good shape.  Granted, I won't be in great shape but I think good shape will cut it.

It was tough for me on Sunday during my ride with Venture Outdoors to be the slowest one in the group.  I have never been the slowest before.  It was a big piece of humble pie to eat.  I kept having to remind myself that I wasn't even out 2 weeks from chemo and I need to cut myself a break.  I did much better swimming this morning knowing I wouldn't be able to do the workout with my teammates.  But you just watch out, come the end of the summer, I know I will be back to my old self and preparing for my big bike vacation in the southern outer banks.

One Step Closer

I had my last chemo treatment yesterday.  It was a great day.  I was nervous that my blood levels would not be good enough but they were.  The nurses started to do a dance in the hallway they were so excited.  I was excited too.  As much as I dreaded getting chemo and not feeling well, I just wanted to be done.  I was able to have a great weekend feeling well and knowing that I'll be feeling well again made it OK. 

I was also able to get my surgery scheduled.  I actually called for the appointment as I was sitting getting my chemo.  I'm all set for June 14.  It's just a little over 5 months away.  It's hard to believe that this journey will soon be over.  I'm am super excited to get my life back and pursue the things I love again.  I miss swimming and hiking and kayaking and cycling so much.  I can't wait to jump back in the pool in a couple of weeks and take a nice ride on the trails.

Good to Go for Monday

Yesterday I went to the dermatologist to figure out what the mysterious red spots were.  Well, they didn't know what they were either.  They decided to do a biopsy just to make sure all was OK.  I told the doctor she could do whatever treatment she wanted as long as she cleared me for chemo on Monday.  She told me she has never had a patient who actually wanted chemo treatment.  Once I explained it was the last one, she understood and cleared me.

I had a punch biopsy of one of the spots on my neck.  I don't really think it was necessary as the spots are fading but if that's what it took to be cleared for chemo then so be it.  It didn't hurt much.  I got numbed up and the 2 stitches were in before I knew it.  I'll go back next week to have the stitches out so no biggie.  I'm a professional with using Glad Press and Seal to cover wounds so even my shower was easy today.

So now I just need to hope that my platelets are high enough on Monday to get my last treatment.  I'm hoping these 5 extra days make the difference.  Hopefully Monday I will have my chemo, be disconnected on Wednesday and be done with this phase of treatment.  Then it's just the reversal surgery and I am done.  I can't wait.  If I get my chemo on Monday I will be calling the surgeon's office to get a date for my surgery while getting chemo!

Mysterious Spots

So I got the bloody nose taken care of.  I went to the ENT on Monday afternoon and he removed the packing and indicated no further care was need.  Yea!  I hope I never have to get my nose packed again.  It is not a pleasant experience.  With the nose thing behind me, a new issue has appeared: I have spots on my shoulders and neck.

The first spot was noticed Sunday night.  I figured it was just a bug bite.  On Tuesday morning, I woke up with 5 additional spots on my other shoulder and my neck.  I'm not sure if they are spots or welts or what they are but they are red and raised.  I went to my PCP yesterday and she didn't know what they were either but after consulting with my oncologist, it was decided I need to see a dermatologist and hold off on chemo today.  Sigh.  So tomorrow I am off to the dermatologist who will hopefully solve the mystery of the spots.

I am disappointed I am not finishing chemo today but there was a good chance my counts weren't good enough to get chemo anyway.  I'm trying to look at the bright side of things.  I'm going to a concert tonight and I'll be able to feel good.  Tomorrow I'm going to the wine festival.  Even though I can't drink a lot, it will be fun to sip a few good wines.  Perhaps a BBQ is in order this weekend.  I'm trying to stay focused on enjoying time with my friends, something I really haven't felt up to in a while.

If all goes well with the dermatologist tomorrow, she will OK me to continue with chemo.  I'll get my final treatment on Monday and disconnected on Wednesday.  It will so nice to finally be done.  It just seems like it's taking forever to just finish up!

Bloody Nose Woes

Growing up, my brother was the one with the bloody noses.  I never had a bloody nose.  That was until yesterday.  Being on chemo, it is common to have some blood in your nasal discharge.  It's sort of a strange thing.  You lose your nasal hair and have drainage all the time, sometimes a little blood tinged.  Your eyes tear a lot as well so you basically look like a toddler who just had a big cry.  But I have managed to deal with these side effects until yesterday.  After blowing my nose in the morning when I woke up, I noticed that my nose was continuing to ooze blood and wasn't really stopping.  It wasn't pouring out but it required constant attention.

So, before I went out the door to go to work, I called my oncologist office and of course they told me to go to the ER.  I knew they were going to say that and part of me wishes I never called.  So, I drove to the ER with a tissue up my nose.  By the time I got to the ER, the oozing had calmed down a bit but I proceeded to get care.  I had my labs drawn and it was no surprise that my platelets were low (26).  The doctor attempted to cauterize my nose but that was unsuccessful (and painful!).  So they decided to pack my nose.  To say the least, it is not a pleasant experience and it's  not pleasant to have my nose packed for the next couple of days.

Luckily I have been able to work from home today so no one had to see this packing hanging out of my nose.  When I go out this weekend, I will be sure to cover it better than it is now so I don't have snot dripping out of my nose in public.  That would be a sight to see!  On Monday afternoon I got to the ENT to have the packing removed and hopefully that will be the end of this.

With my platelets being so low, my last chemo will probably be delayed a week.  They told me to go and have my labs done and see what happens.  I don't have high hopes that I will finish on May 2 but instead May 9.  I can see the finish line but I just can't get to it.  Tripped up right before getting there.  People say almost done but there is still a lot to get through.  I just keep plugging along and one day, it will all be done.  Oh, I can't wait for that day!

My New Best Friend

Hello blog followers.  I apologize for not updating the blog lately but my new best friend, my couch,  has gotten in the way.  Chemo is definitely taking it's toll on me and I have become a couch potato.  Once I am home from work, I put on my comfy PJ's, sit on the couch with my remote and chill.  I think perhaps, my body is permanently indented in the couch.  An important thing to note however, is my couch is not my best friend forever.  In fact, I am thinking once this journey is over, a new couch is in order.  I think I have spent more time on my couch in the last 3-4 weeks than I have the entire time I have owned it.  But I know once the chemo has ended (25 days but who is counting!) that I will need some recovery time.  But after that, who will need a couch?!?!  I will hopefully be riding my bike and golfing and generally, not at home to be sitting on my couch.

Although it has been a comfort these last couple weeks and will continue to be so for another couple weeks, couch and Carol just don't fit well in the same sentence.  At first it was hard to get comfortable on my couch.  I was almost like Sheldon from the Big Bang Theory trying to find a place to sit at Penny's.  None were comfortable at all.  But I have developed a love hate relationship with my couch.  The couch is beloved right now but I think it knows that in a short time, it will be once again forgotten and never used.

On a serious note, I do have 25 more days until chemo is over.  I cannot wait as the chemo has taken every ounce of energy I have.  I continue to work and I think that's good for me.  I think it's good to have to get up and get dressed and get out the door every  morning, even if it means taking short breaks in the process.  At work I get engrossed in my projects and forget about chemo, and being tired, and even my dear friend couch.  My boss has been amazing understanding if I need to work from home, not that I have done that too much.  I'm tired of being tired but it's part of the journey and knowing the end is nearing makes it tolerable.  I have already started to plan when I can start golfing again as well as going on trips with Venture Outdoors.  I envision that last day of chemo, emailing the surgeon to schedule my surgery.  The finish line is near and even when I feel I can't go anymore, time just keeps passing by whether I am ready or not.  I know I can hang in there just a couple more weeks and then look forward to better times.

Spring has Sprung

 Spring is here for sure!  It has been in the 70's all this week in Pittsburgh and this morning, the heat didn't even come on.  I know, I know.  There could still be a big snow storm and it has snowed in April.  I just choose to believe that is not going to happen.  Why be negative when all this fantastic weather is occurring?  Just enjoy it while it lasts!  I got my toes painted this week so I'm ready for sandals!

  Yesterday I was able to go for a walk on my favorite trail in the warm weather.  The trail actually felt crowded.  There were lots of people preparing for the marathon as well as cyclists and dog walkers.  You could just feel everyone's energy.  I actually walked downtown this time around.  I went to see a show and decided to walk to the show and then cab it home.  It was even nice to walk over the Roberto Clemente bridge.  There wasn't even a breeze.  The only thing missing was kayakers but I know they will be out soon enough.

  I have 50 more days left of chemo.  I can not wait to be done.  I'm tired of my body being exposed to the awful chemicals and what it is doing to my body.  I am often tired and my appetite changes hour to hour.  When I got to the theater last night, I had to walk up 2 flights of stairs and I was really winded by the time I got to my seat.  Last year at this time I could have climbed the 42 flights at the Cathedral of Learning with no issues at all.

  Knowing how I feel and I am relatively healthy, I could not imagine going through chemo when being really ill. It certainly takes its toll on the body.  I know it will take a while for me to get my strength back and be back to my usually healthy busy self.  I understand that and I am giving myself the permission to take my time to get back in shape.  That being said, I am very excited that I booked a bicycle tour of the southern outer banks for October.  That's plenty of time to get my riding legs back and a perfect time to visit that part of the country.

  So the count down is on.  Tomorrow will just be 7 weeks to go.  Next week I will have my 5th treatment out of 8.  Closer and closer to the end of chemo.  I just can't wait.  I know you aren't supposed to wish your life away but I think it's OK if I wish these 50 days away so I can move on to healing and getting my strength back.

Half Way There

It's nice to know that I am half way through chemo.  I can almost taste the finish line now.  And the reversal of the ileostomy doesn't feel like a big deal at all.  I just want to be done with chemo.  8 weeks from tomorrow, I will be.  Everyone knows how Pittsburghers love fireworks.  Well, there will be fireworks on May 5.  I couldn't figure out why there would be fireworks so early in the season, but I'll take it as a personal celebration for being done with chemo.

The chemo is tough.  I'm lucky that I don't have the worst side effects but still, I can feel the war being waged inside my body.  It wipes me out and brings me down for a couple of days and then I can bounce back.  Knowing I only have 4 more times to go through this cycle makes it feel like I can get through it.  It's all down hill from now on.

I am grateful for our early spring in Pittsburgh.  It makes getting outside easier and the side effects less painful.  Of course we are all wondering if we are going to get one last blast of winter.  Let's just hope if we do, it will be a non-chemo week!

My City, My Trail

Who knew it could be above 50 and sunny in Pittsburgh in February?  I certainly didn't believe it until this past Monday.  I have been worried about my physical fitness the last couple of weeks. I went from exercising every day to a couch potato in a very short time.  Being physically fit is very important to me and having the chemo hold me back has been bothering me a bit.  I love to be outside but when I breathe the cold air, it is just so painful.  It's almost gotten to where I'm afraid to go outside and take that first breath never knowing if the side effect has passed or not.

Well, Monday it was 57 degrees and sunny in Pittsburgh.  I was not going to miss this opportunity.  I knew with the air that warm that I would be able to get outside.  I have a beautiful trail right outside my building that runs along the river.  I have walked the trail and ridden my bike on it so many times, I know every square inch and when there are new plantings or if the trail has been modified in some way.  I decided on this day, I wouldn't push myself and just walk to PNC Park and back.  I dressed warmly and put these super warm mittens on and wore 2 pairs of socks.  I started off slowly and got passed by a much older woman but I was not to be deterred from my walk.

It was so great to be outside and walking on the trail.  I was just smiling from ear to ear.  As I approached PNC Park, downtown Pittsburgh came into view.  Boy have I missed my city.  I really enjoy living in Pittsburgh and being so close to downtown.  Seeing it again from the trail helped me feel not so distant from all the things I enjoy about Pittsburgh.  I was hoping the outfield of PNC Park was open to walk through but no luck.  I also found that the trail in front of PNC Park was blocked for construction.  I was still feeling pretty good and decided to walk down to see Mr. Rogers and check on my seats at Heinz Field.  I got down to the Mr. Rogers statue and took a seat right next to him to get a good view of the city.  Then, after a little rest, walked by Heinz Field.  I can't wait for Pitt Football to start up again.  I didn't miss a game last fall even though I was toting around a pump of 5FU for most of the games.

Finally, I circled back and made my way back to my apartment.  The sun was shining and it was a bit breezy but it was so nice to be outside doing my usual thing.  Even the Canadian geese and their gross poop didn't bother me on Monday.  I know soon enough it will be kayaking season (it opens my last day of chemo and I'm going on a trip prior to my infusion) and I'll be riding my bike up and down the trail again.  And then before you know it, it will be time to make the walk for all the Pitt games with some of my really good friends.  I love that trail and I am so happy I live right on it.  And mostly, I was happy to find out that I'm not as out of shape as I thought I was!

Fat Tuesday and Lent

    It has been a long standing tradition in my family to have ice cream on Fat Tuesday.  This wasn't just an ordinary bowl of ice cream, but the deluxe sundae, preferably from Friendly's.  Unfortunately, ice cream is something I can't eat right now but that was not going to hinder me from indulging on Fat Tuesday!  Instead, I had chocolaty, marshmallowy, melty goodness!  This 5 minute cake in a mug was the next best thing to ice cream.  It was so rich and yummy I had to share my dessert!  Delicious!

    I have been debating for some time about Lent and if I should give up something.  I take Lent quite serious and have given up things like Jack Daniels, soda, Starbucks Hot Chocolate and M&M's.  With everything going on this year, I think God will let me off the hook.  After all, when my brother got married, the priest said a prayer and magically we were allowed to eat meat on a Friday during Lent!

    I think the thing that appeals to me most about Lent is the count down.  I will say advent is a little better with counting down.  How can it be bad to count the days to Christmas with a chocolate treat to go along with it everyday!  But seriously, I have been doing a lot of countdowns lately.  I have a great friend that sends me a daily e-mail counting down to the end of this journey.  I have another good friend that reminded me that I'm not just 37% through chemo, but 37.5%!  And it just happens that the Pittsburgh marathon is 4 days after my last treatment.  So, as I increasingly hear news and the countdown to the marathon, I know come that day, I will be done with chemo. 

    So, Lent is just another opportunity to do some counting.  Do I really need another countdown?  Why not?  There are no rules about how to get through chemo and if counting is helping, why not?  I won't be giving up anything for Lent but I will be helping my friends who are giving up things to countdown.  And for me, I'll be 75% through chemo on Easter Sunday!  I always thought Mr. Snuffleupagus was my favorite Sesame Street character but perhaps it was The Count!

Not Really Complaining

I've never really been a complainer.  I feel like it just highlights the bad and doesn't help any.  I know as I go through this journey I have every right to complain, but I don't think I have much.  I know for others complaining is helpful and gets all the negative feelings out.  Not for me though.

I couple little things have been bothering me though.  They aren't life changing or a big deal but they have been bringing me down a bit.  I feel like the mental part of this journey is just as important as the treatments and the physical aspects.  As these little things were dragging me down, I decided to address them yesterday.

One issue that has been bothersome is my teeth.  As frequently as I brushed them during the day, my mouth always felt dirty and had a bad taste.  I know that one of the side effects of the chemo is mouth sores but this was different.  A friend of mine and I go to the same dentist.  He just happened to be going yesterday and asked the dentist about what I can do.  My dentist provided a sample of Biotene toothpaste and mouthwash because I apparently have a dry mouth.  With just the first use last night I noticed a huge difference.  My teeth have not felt this clean in weeks and I didn't have to get up in the middle of the night to get a drink.  Today, I don't feel like I have bad breath and no film is developing on me teeth.  One issue solved!

The second issue is that my nose is always runny.  I don't have a cold and I'm not sick.  Apparently the chemo causes increased secretions (which I don't understand the dry mouth issue).  Anyway, my nose is getting a little sore from blowing it.  I have found that taking Sudafed does the trick.  I only take it during the day when I am working or out doing something as I don't want to take it all the time.  But, it dries me up and lets me enjoy my day and give my nose a break.

Finally, my complection has changed.  The chemo has caused my freckles to be out like they are in the summer.  I also noticed my foundation just hasn't been providing me the coverage I am used to.  So, I went to the Clinque counter yesterday and had a consultation.  They assigned me to a breast cancer survivor who went through many of my same issues so it was good to talk with someone who really understood what I was going through.  After some trial and error, we found some products that I was happy with the way I looked.  Of course while I was there, I had all my make up done for fun.

I can't tell you how much better I feel today with these little issues resolved very quickly.  So, was I complaining?  I'm not sure.  I would prefer to label it as addressing the issues.  Either way, I'm glad I took care of what was bothering me because it's made a huge difference in my mood.  And I guess if there is ever a time, that I'm going to deal with little things that bother me, this is the time!

Brrr!!!!!

Wow!  People weren't kidding when they mentioned the sensitivity to cold with FOLFOX.  Yikes!  It's not the best timing to be having my chemo in February in Pittsburgh.  Winter has finally arrived and has made getting outside a big problem for me.  Since this was a post chemo weekend, I didn't have plans except to rest at home.  I am sure glad those were my plans.  We had about 4-6 inches of snow this weekend from Friday - Sunday.  Me, I stayed inside from the time I got home from work on Friday until this morning when I had to go to work.  Just breathing the cold air takes my breath away and my fingers and toes immediately begin to tingle with even the slightest feeling of coldness.  And well, cold beverages, they are unbearable too.  But it's winter in Pittsburgh.  What's better than hot chocolate, hot soup, and warm dinners?  Crescent Rolls are calling my name!

I keep thinking that even though this coldness is tough to bear, I would be more upset if this was happening during the summer.  I couldn't imagine sitting poolside in the warm summer sun, sipping hot tea.  Yuck!  Even worse, I love to be outside.  I would have hated for it to have been a warm summer weekend with BBQs and pool time and me not feeling well.  No, as much as the coldness is a real pain (literally), it sure beats missing out on summertime fun.  I got my eyes on the prize, and that's warm sunny weekends all summer long!

Besides the sensitivity to cold, my biggest issue right now is just having a sour stomach.  I'm not nauseous and it's not acid reflux.  It's hard to explain.  The only thing that I have experienced like this that is similar is going on my favorite roller coaster several times in a row and having that funny feeling in my stomach.  It comes and goes and when it's gone, I eat and when it comes back, I just sip fluids.  I am hoping in another day or two this will pass as well as the cold sensitivity so I can enjoy the rest of my non-chemo week.  I know as each day passes, I am one more day closer to being done.

25% Through Chemo

Yesterday was another chemo day.  I wasn't looking forward to it at all based on my experiences from the first treatment.  It was a dreary day in Pittsburgh but the treatment center wasn't so bad.  I had a different nurse this time but equally as nice and competent.  She even had a few minutes just to chat with me.  The routine is the same: access the port, draw blood, wait, pre-drugs, wait, chemo, pump hook-up home.  This time it took about 30 minutes less than last time so no complaints for me.

I had lovely company yesterday.  At lunch, we opted for food from the cafeteria.  The nurse brought us a menu for us to make our selections.  My friend and I considered changing chemo days so some of the other days' choices seemed right up our alley.  My friend offered to go and I was trying to explain the complicated directions to the cafeteria, my nurse came to the rescue with a secret passage way.

It wasn't long after lunch that my chemo was through and the home care nurse came to hook me up to the pump.  Before I knew it, we were home and I was relaxing on the couch watching Murder, She Wrote.  Doesn't get much better for relaxing than a cup of tea and Jessica Fletcher!  My friend stayed with me to make sure I was OK and to supply me with homemade chocolate chip cookies.  Yum!!!!  Before my friend departed, we played Super Mario Bros.  We didn't get very far.  I know I was holding her back but she would never admit it.  I really need to sharpen my skills!

The side effects were much more tolerable this time around.  I still got the numbness in my knees and forearms but it wasn't as intense as last time.  But just like last time, it went away sometime in the night.  I did have a lot of trouble sleeping last night which drives me crazy but I am hoping will turn into a great night's sleep tonight.  Today I am feeling pretty good.  No sour stomach or fatigue or pain.  The biggest, and it's a big problem, is the effect of the cold on my hands.  It's just so painful even with gloves on.  The only other issue is keeping fluids warm for me to drink them.  I can't even drink room temperature beverages right now.  These side effects take about 5-7 days to pass but boy, when they are present, it is not pleasant!

So I am 25% through the chemo treatments.  After this experience, I know that I can make through the entire course and it's not going to be as bad as I thought it would be.  Yeah, I would prefer not to have chemo at all but I really can't complain too much.  Besides, complaining never makes anything better anyway.

Enjoying My Week

Since my last post, I have been feeling more myself each day.  I didn't require a nap on Sunday and Monday I woke up feeling like myself again.  I felt stronger and less fatigued as this week progressed.  Now that it's almost the weekend I am pretty excited.  I feel good and plan to enjoy SuperBowl weekend.  I don't have any big plans but whatever I decide to do will definitely be fun.

I was longing to exercise this week.  I haven't been able to swim because I still have a lot of sensitivity to cold and especially cold water.  I was racking my brain trying to figure out what I could do to just move.  As I was sitting on my couch pondering this, I saw my Wii and got out Wii Fit.  It was a blast and just what I needed.  Now, it's not exactly as much exercise as I would like but it got the blood flowing and I felt a lot better after playing.  I do hope to get into the pool next week on Monday and Tuesday prior to my next round of chemo but I'll have to see how my fingers feel about it.

I have been eating well, perhaps a little too well.  Since I didn't eat much last week, it's probably OK.  I'll see what the scale says on Wednesday.  My appetite has come back but the foods that seem appealing change minute to minute.  I just try to go with it.  I pack lots of different things for lunch hoping that at least one of them will taste good to me.  So far, so good.  Besides, I work where there are lots and lots of restaurants so it's not a big deal to find something last minute.

Working has been really good for me.  It keeps my mind off of not feeling good or being tired.  It really helped last week and this week kept me going.  This is the first full week I have worked since I returned to work in January.  I think I got through it just fine.  I won't lie though, I am not setting my alarm clock this weekend!

If the chemo continues to follow the pattern of feeling not so good for 4 days and feeling good for 10, I can get through this without a problem.  Since I only have one treatment to go by, it's hard to tell but that's what I am going with.  We'll know more next week this time.

And Stay Away! Chemo

Even though the pathology from my surgery came back negative, I am going through this next round of chemo.  I know for myself, I need to make sure that I did everything I could to make sure the cancer is really gone and hopefully will stay away.  That's what this round of chemo is about.  At dinner the night before I started chemo, my friend came up with the name, "And Stay Away Chemo" and the name stuck.

Earlier this week I packed up my bag to bring to the infusion center.  I had asked my fellow WhatNexter's on the ACS web site what to bring and they were right on target.  I packed my own blanket as well as my laptop, some activity books, a book and my iPod.  My friend packed a lunch with lots of yummy snacks and treats.  I was set to go.

I decided to go to a different infusion center for this round of chemo since I had some issues at the other center.  I was a bit nervous as I didn't know what to expect even though I had a tour of the infusion center several weeks ago.  I was assigned a room and immediately greeted by my nurse.  I got a tour of my room and I could just tell this was going to be a better experience.  My nurse took the time to lay out the expectations of the day and then continued to explain things to me throughout the day.

Overall, the day went very smoothly.  My port was accessed and my blood was drawn to make sure my levels were good for me to receive the chemo.  When the results came back, my nurse took the time to explain which results were most important and what levels my oncologist wanted to in order to chemo on my schedule.  Next it was an infusion of pre-medications to prevent a reaction and nausea.  We waited a half hour after the pre-meds and then the chemo started.  The chemo ran for two hours and then I got a push of another chemo drug.  After that, the homecare company came to hook me up to the pump and I was on my way.

I think I was at the infusion center for a total of five hours.  Despite packing a bag with lots of things, I really didn't feel like doing anything.  I was able to watch Anderson on TV while I was there but that was about it.  I napped for a little while and played some games on my cell phone.  I am just not good at just sitting.  I am happy I made the switch to the new infusion center.

When I got home, I was feeling tired but not sleepy.  About an hour after I got home, I started to feel some numbness in my knees and forearms.  A common side effect to the chemo is neuropathy in the extremities.  The other thing I noticed was extreme sensativity to cold in my hands and feet.  I was warned but I forgot.  I washed my hands without letting the water warm up and boy did I pay the price.  It was like my hands were in ice water and just burned.  And then I forgot about drinking cold beverages and the side effects.  I took a sip of water at dinner and I thought I was swallowing glass.  Lessons learned!

I was concerned about being able to go to work the next day based on how I was feeling going to bed.  My knees and forearms were still numb and my stomach was a bit sour.  Sometime in the middle of the night, the side effects passed and I felt OK by the time I had to get up and go to work.  I did OK at work on Thursday but as soon as I got home, I went right to bed.  I got a good 10 hours of sleep on Thursday night and felt pretty good on Friday.

Friday, I met the homecare nurse at home in the afternoon to be disconnected from the pump.  It was nice to be free from the pump.  The nurse spent a lot of time with me to make sure I was going OK and making sure I understood all the side effects of the treatment.  Friday night, I called it a night early and looking forward to a week and a half with no chemo.

This is going to be a long couple of months but something I can get through.  One down, seven to go.

Six Weeks Post-Op

It's hard to believe 6 weeks ago at this time, I was in the OR having surgery.  It actually seems like it was a lot longer ago than just 6 weeks.  Hopefully my time in chemo will feel like it moves as quickly as this time did.

A lot has happened since my surgery.  I am all healed up with barely any scars.  In fact I was looking at the scar from my port the other day and that one can barely be seen.  Hopefully I will be able to say the same of these scars as well.  I have gotten used to the ileostomy though I'm not sure it has gotten used to me!  We are not always on the same schedule but I guess that is life for now.  I am still tired more often than not and I don't anticipate that getting better with chemo starting next week.  I must keep telling myself to embrace the nap.

Work feels like I never left.  Lots of great projects to work on to keep me busy and my mind stimulated.  I enjoy my position and the variety of projects I work on so work for me is something I look forward too.  Plus, I got a couple new suits and outfits for work to fit with my new plump so it's fun to wear the new clothes.  Of course there are days when I'm ready to pull my hair out and wish I was home on disability again but those are far and few between.

I've returned to most of my usual activities.  I started back to swimming this week.  I didn't drown but there were times I wish I had some swimmies on!  I know it will take some time to get back where I was and the chemo isn't going to help with that.  Still, I love to be in the water and if I keep that in the forefront of my thoughts, the slowness and fatigue doesn't seem so bad.  I also returned to Toastmasters this week.  I even signed up to do at our next meeting.

Most importantly, I feel like I can see the end of this journey.  As much as I am dreading starting chemo again, it means I am another step closer to the end.  Knowing the cancer is out of me makes me feel like I can fight through this chemo better than before.  As much as I try to tell myself, you just need to get through the next 5 months, I am also trying to keep in balance that there is no reason to continue to live my life to the fullest during this time as well.

More Chemo, Here I come!

I had my appointment with the oncologist yesterday.  I had long known about the discussion I would be having with him.  I am being treated as though I have stage III cancer though we will never know for sure if I did or not.  Having the negative pathology from my surgery questions whether this second round of chemo is really needed or am I being over treated.  Although the doctors involved in my care of discussed this issue numerous times, I decided long ago that I wanted to do the full treatment.  I wanted to know for myself that I did everything I could to rid my body of cancer and hopefully prevent if from ever coming back.  I believe four months of chemo and potentially feeling yucky is worth the extra assurance that the cancer is really gone.

I also had to break it to my oncologist that I wanted to have my chemo treatments at the hospital's infusion center, and not his own infusion center.  It didn't really seem to bother him at all which made me feel a lot better.  I didn't have the best of experiences at his infusion center despite writing a letter outlining all the ways they could improve.  I know the grass isn't always greener but I know it can't be any worse.  Knowing that I have to sit at the infusion center this time for four hours each treatment, I want the best possible environment to spend my time.

So the start date is January 25, just the way I wanted it.  If all goes well, I will be finished up the first week in May.  Finishing up at that time is perfect as kayaking begins then.  About a month after chemo, I can have the reversal surgery and hopefully check this journey off as being completed!

Life is Good

Despite the Steeler loss last night, life is good.  I returned to work last Thursday and fortunately had a light start back.  I am really getting the hang of having an ostomy and my stoma has shrunk enough for me to drop down a size which makes the appliance even smaller.  I had an outstanding shopping trip over the weekend and found new clothes which are also comfortable.  Yesterday, I got my bike on the trainer so I'll be able to exercise more regularly now.  I also decided that I am going to back to swimming next Monday.  I really do love to swim and can't imagine going too long without it.  I chose next Monday because it's a work holiday so if I forget any supplies or have any issues, I'm just heading home anyway so it won't be stressful at all.

Wednesday I see the oncologist to get the plans together for the second and final round of chemo.  As much as I am not looking forward to being on chemo, I know the sooner I start, the sooner I will be finished.  I know the regimen is 8 treatments every other week.  So, if I get started at the end of this month, I will be done the first week in May.  About 4 weeks after completing chemo, I will have my ostomy reversal and then have the summer to enjoy!  Life really is good.

Indy Star Article

Well, as an early birthday present, the article I was interview for regarding the WhatNext site appeared in the Indy Star this weekend.  Here is the link:

http://www.indystar.com/article/20111230/LOCAL/112300335/Businessman-launches-website-help-cancer-patients?odyssey=tab

Last week I was interviewed for another article for Cure magazine which will appear in the March issue.  The article is about using the internet to find information about cancer and treatments.