Summer Under the Sun!

Hello out there

School was out, weather was warm, surgeries were healed.  It was time to take on my next challenge, removing the tumor from my right glute muscle.  My right glute muscle was the site of my original tumor and we treated it with radiation in October of 2004.  There had been no sign of tumor there until I got a pet scan earlier in the year.  It was a shocker to us all.  To see that the original tumor had activated again made us all a little nervous; the doctors said it is expected that sometimes the nucleus of the tumor to reactivate.  I would have to go outside of NIH to have the procedure done. 

I had the tumor removed by the amazing Dr. Wodajo at INOVA Fairfax.  The tumor was about the size of a walnut and intertwined within my nerves close to my pelvis.  This would not be an easy surgery.  It took Dr. Wodajo about an hour and a half just to find my tumor, but 2 pints of blood later it was out.  Dr. Wodajo was not able to get clear margins because it would have effected my nerve; which is practically impossible to heal.  All we could do now was wait a couple months to get another scan to see if anything lit up.  I was out of the hospital in about 3 days and just in time for my birthday. 

When I think about my birthdays over the past few years, there is not much to remember.  I am always sick or getting some sort of treatment.  I plan to go out on the town for my 25th no matter the situation I am in.  We are extremely grateful for every year that goes by, I feel that we should have a big party to celebrate 6 years of fighting.

Dan had the opportunity to work in Texarkana over the summer with a minor league baseball team down there.  We were all excited about the doors this could open.  I was able to go down with his parents and visit him for a few days.  I always love going to watch Dan coach.  It is always a good show.

It was great down in Texas.  Warm, sunny, and Dan was there.  The summer had its moments of flying by as well as times when it could not be passing fast enough.  I took a summer class and worked a couple summer camps for volleyball.  And of course....Camp Fantastic.

This year at Camp Fantastic was one of my most favorite.  I met amazing campers and will never forget the experience.  I really needed the strength after the hellish year I had.  Besides the beginning (getting engaged), 2009 had really been the worst year yet!!  Hard surgeries, distance from Dan, and now I was using a cane for my hip.  The a-vascular neucrosis in my hip had gotten really bad after my 2 lung surgeries.  I began using a cane in the end of June.  I probably could have used it sooner, but I did not want to accept it.  In my mind, the fact that I needed a cane was an indicator that the cancer was winning the battle.  However, it got to the point where I could not walk without it.  The pain was immense, I was scanned and we realized that my bone had collapsed.  I knew it would get to this point but I did not think it would be so soon.  The next treatment would have to be a hip replacement; but this would require me being off treatment.

Summer was winding down and it had been about 2 months since my surgery, time to be scanned. 

Fighting the Good Fight

Hello out there!!

February came faster then ever.  This surgery would be the first of 2 steps to get me tumor free.  The procedure was a right lung video-assisted tumor removal.  They removed 3 tumors laproscopically.  Surgery went great and the healing process was not very long; one chest tube, which was only in there for about a week.  Once I had been about 3 weeks out from the surgery it was time to have the March surgery.  The March surgery was much more involved.  The surgeons would remove a tumor from the bottom of my lung as well as remove half of the upper lobe.  I did not know what to expect, but the fact that the other 2 lung surgeries had gone perfect....I thought this one would be the same.

I woke up from this surgery and was extactic to see that everything had gone great.  However, I was supposed to exercise my lungs by breathing into a inspirometer.

Normally when patients breath into these things they are careful, gentle, and scared to really push themselves.....but not me.  I, being the go-getter that I am, gave 110% when I did it.  Of course, what happens.....I split my incision.  This caused my lung to leak air while it was trying to inflate.  My recuperation went from one big chest tube to 2 little chest tubes in and outside my lungs.  Everyday it was a guessing game as to whether or not a tube would be adjusted.  Really this was probably the WORST time ever. Every other day I had the tubes adjusted; which involved loopy meds and an operating room.  

One time I ate breakfast, thinking that it would be an uneventful day in the hospital, when they really wanted to adjust a chest tube a little.  I have never been in a more stressful situation then when I was on the operating room table with only minor local numbing medicine, getting a tube that is inside my body adjusted.  The procedure never hurt, but it was 2 hours of pure panic waiting for the time when it would hurt like hell.  I have never been the same since; actually kind of a baby when it comes to surgeries now.  I just insist that they put me to sleep for everything!!

So weeks of tubes and uncomfort later, I was recovered.  It was time to return to school and finish out the next month or so.  Graduate school has turned out to be pretty easy adventure.  Most of the classes are just based off case studies and real world situations.  We no longer learn meaningless stuff that we will regurgitate onto an exam.  We look at cases and decide what we would have done in that situation.  I love it!!!

Spring means baseball season in my life.  Dan is a college pitching coach who one day hopes to have his own team.  Right now he coaches for a junior college close to my school.  We see each other whenever possible, but springs are never easy for me.  I find it hard to go through all this stuff without him by my side all the time.  I understand I don't need him there for everything, but when he is there it makes such a difference.  This is something that is a pretty big issue in our relationship, I think it is because we both want to be happy while making the other one happy.  Either way, planning our life together when we are apart...is a little backwards.  Sometimes I wonder if he puts the distance between us because he cannot handle the issue.  Cancer is a lot to think about, and I have certainly been through it all, and maybe this is his coping mechanism.  But where does that leave me?  Am I supposed to wait until he can wrap his mind around the fact that my days are invaluable and that they should be spent with the one I love? What is the alternative....having no one?  I wasn't sure I was going to blog about this, but I feel that it is something that is relevant to any cancer patient.  Having a relationship while having a terminal illness is stressful.  I am grateful everyday that I have Dan; and he is the love of my life.  But we have had our issues, this is a situation neither of us wants to be in.  Sometimes it is important to see the story from both sides.  Dan hates seeing me uncomfortable or in any pain.  So can I blame him for not being there for everything, or be grateful for what he is there for.  I have decided that it is best for my life to be grateful for what he is there for.  Though it is hard, I understand where he is coming from. 

With 2 surgeries down, all that was left was a little tumor in my right glute muscle.  This would be taken care of in June.

The Engaged Life

Hello out there!!

I was definately on cloud 9 now.  Even though I still had tumors...nothing could go wrong.  I was engaged a man who was everything I could have dreamed of.  Smart, funny, tall, easy going, inspiring, strong (he can lift me up which is always a plus), warm-hearted, and any other positive adjective you could think of.  The next couple weeks were the best ever because we got to tell everyone our news.  There is just something about spreading good news for once that makes everything ok.  It was a treat to be able to call Dan "Fiance". I know it is getting a little mushy so I will keep the rest to myself.

Winter break went by extremely fast.  I still had tumors in my lungs and we needed to figure out the next course of action.  We met with the doctors and considered all the possibilities. 

Surgery...this option will definately remove the tumors
Chemotherapy...this may help them shrink, and maybe get rid of anything we can't see; but will probably not get rid of the tumors for good
Radiation...I can not get large area radiation because it is a high risk for my lungs.  I have already had my lungs radiated and now that I have had a transplant, GVH in the lungs can be fatal

Once we weighed the good and bad we decided to go with surgery.  We would do a video assisted laproscopic like surgery to get the tumors out of my right lung, and we will perform another thoracotomy on my left lung.  The doctors had also decided that it may be in my best interest to remove part of my left upper lung.  There had been an area that showed up on my scans that would get bigger and smaller, they were worried there was something they couldn't see due to scar tissue.  So I would go back to school and get as much work done as possible, then I would leave to embark on my venture to be tumor free. 

I had already had one thoracotomy on my right lung and it went great.  I have a huge scar that runs along my shoulder blade and under my arm.  Now that I will have the same procedure on the other side, Dan says that we can tell people that my angel wings have been cut off.  Cute, right?  I think scars are sweet and they let people know that you are somewhat of a badass. 

People were nervous for me to have all this done in such a short period of time.  My right lung tumor removal would be in February, and thoracotomy and partial lung removal would be in March.  I knew that this was my time.  Everything that I had gotten...all the chemo, the radiation, the transplant, the surgery, the antibody...it was to bring me here.  To the point where everything can be removed surgically. I didn't want to get too excited or get my hopes up again; but sometimes, thinking that you are at the end of the road is what gets you through. Those thoughts somewhat cloud all the shitty stuff that you have gone through or are about to go through.

I got an Award!!

Hello out there!

So I received this award from my friend Samantha yesterday. This made me extremely happy so I thought I would spread the love to one of my favs.  I am passing the award onto my friend Juliana.  She was one of my first followers and I think she is A Doll!!!

So I hope you enjoy it Juliana and thanks a ton Samantha!!!

This will be one of my favorite posts

Hello out there!!

So now it was time for winter break.  I had just finished my undergrad degree in Health and Physical Education; and it was time to celebrate.  We decided that it was time to go on a cruise.  It had actually been planned for quite some time now but we were leaving on January 11th!!!

The "we" of the cruise included my family, Dan's family, a few of Dan's Aunts and Uncles, and a few family friends.  People were getting suspicious about the purpose of this cruise.  Dan and me had been dating almost 5 years at this point and I don't remember one wedding where we didn't get the question "when are you two gonna tie the knot".  I have never been one to pressure Dan in any way.  I didn't really care about being married to him; we were already married in my eyes.  I also have learned not to get too excited about things, for fear that they do not happen the way you picture them in your head. 

So we left for a week long cruise of the southern caribbean.  This was my first cruise, and the longest time Dan and me have ever spent together.  I know what you are thinking....Dan and me lead very busy lives and though we see eachother everyday sometimes, it is never 24/7 for a week.  It would be heaven.

The first day would be mostly plane rides and boarding the ship.  We settled a little in our room and then ventured out to see what this boat was all about.  We of course found the casino; Dan found roulette.  Day 1 was all-in-all not so bad.  The second day was a day at sea; so it was a formal dinner night.  It was January 13th.  We had hung around the pool during the day, ate lots of food of course, drank delicious drinks, and who knows what else.  Then it was time to get ready.  I love getting all dressed up; maybe this is because we really don't get a chance to dress up after we are seniors in high school...unless we are going to a wedding or something.  So Dan and me had finished getting ready early so we went down to the bar to get a drink before dinner.  He asked me if I wanted to go to the front of the boat to get some air.  I suggested that since it was close to dinner time that we just go on the side of the boat; we were almost at the back.  So we went outside to get some fresh air and enjoy each others company.  However, we had walked out on the smoking side of the boat and cigarette smoke really grosses me out (this is another post entirely), so we walked to the other side of the boat.  This is when it happens....Dan starts his speech....talking about how he had something of his grandmothers to give me...and that I could only get it on one condition.....then he got down on one knee......my heart stopped.....I began to shake.....and he asked me....Will You Marry Me????  I was in such shock that I forgot to respond at first, and of course I can't cry because I have no tears.  I can only imagine what those seconds felt like to him...anticipating my response...not seeing any reaction one way or the other.  Finally, I remembered to say YES! 

Once we had come back to reality I had to go tell my parents.  They knew that Dan would propose to me because he had asked them before hand.  My parents and his parents were the only ones who knew though.  So telling everyone was soooo exciting.  We announced it at dinner that night.  Now the cruise was not only a celebration of me graduating, it was a celebration of Dan and me.

We did many things on the cruise.  We went snorkling, went on a high ropes course, toured a couple islands, played lots of roulette, saw an ice show, and a few other things.  It was an amazing vacation!! We were all in need of a break; from work, from school, from cancer. 

Things could not be going more right.  But like I have said in previous posts, all vacations must come to an end, and the real world sucks sometimes.  I can't wait to go on my next cruise though!!