2016 Game Plan...Druggin', Cuttin' and Kickin' Ass

Well, I am going to start this post with, I HAVE HAIR!!!!!!!!

I am so excited!!  While it has been great to not have to worry about doing my hair this last year, I am pumped to have a warm head again!!  It has been growing so quickly, I had to buy shampoo and conditioner last weekend for the first time in over a year.  I know that doesn't sound like a big deal but for a bald, cancer patient it is.  

I officially started Votrient (Pazopanib) on December 15th, this is my new targeted therapy to battle this terrible disease.  I am hopefully that this new, little gray pill will do it job and shrink or keep stable the three tumors that I still have in this body of mine.  At $80 a pill, it better work like the doctors say it will.  I have never been so nervous to handle a tiny pill before, but when you are holding a white bottle with $10,000 worth of medication you are overly careful at your bathroom sink so that one none of them drop into the drain!!  Okay, enough with the funny stuff, this little pill is a very serious medication and we hope that it will essentially kill the tumors and keep the cancer at bay for as long as it will work.  Unlike some cancers, the type of cancer that I have and the nature of it will really not allow me to be off any sort of treatment ever for the rest of my life.  The idea of this medication is that it will block tumor cell growth in several ways.  Votrient targets  several proteins (called tyrosine kinases) on the surface of cancer cells, as well as targets within the cell. Several of these targets are thought to be involved in angiogenesis (making of blood vessels).  By blocking these targets, it is hoped the cancer will shrink.  It is not considered a chemotheraphy in the traditional sense but a targeted therapy since it is supposed to only target the actual tumor cells.  Traditional chemo, like what I did yesterday targets all cells in your both, it does not differentiate between the good and bad cells, hence all of the drops in my white cell counts over the eight months I was doing VAC/IE.  I am happy to not have to deal with the low white cell counts and all that comes with that.  However, Votrient isn't without its own negative side effects, but like the other, they are nothing that this girl can't handle.  

Just as 2015 started off with a bang, 2016 is looking like it will too.  Don and I are going to be traveling to California at the end of the month to celebrate our 8th Wedding Anniversary and essentially take our honeymoon that is long overdue.  We are very excited to head to the west coast, as neither of us have ever been.  We will be checking off a bucket list experience that we both have and dining at The French Laundry.  We are so excited and thrilled that we will have this time together to celebrate the life that we have made together.  The kids will be hanging out with grandmas and grandpas while we are gone, as this is a NO kids trip :)

Once we get back from our amazing trip we will be thrown right back into the world of cancer.  As much as I would like to continue to pretend that I am normal and don't have it, there are things on the horizon to continue this battle.  I will have full scans (MRI/CT and PET) the week of February 15th to see how the Votrient is working.  Since I will always have to be on some type of treatment it is in my best interest to give the Votrient a chance to see if it is working against my DSRCT.  We are doing this because if the Votrient works that means I will be able to continue with it for the foreseeable future as opposed to have to go back to other chemotherapy treatments or going the clinical trial route.  If the Votrient does what it is supposed to and shrinks the tumors that will be 1) amazing and 2) keep me from having to undergo a very serious and risky surgery to remove the tumors.  However, if the Votrient does not shrink the tumors (basically, they continue to stay stable, which is also ideal with this cancer) or there is growth on the scans then we will go the surgical route.  The surgery is a very delicate and risky surgery because of the location of two of the three tumors.  The tumor that is by my kidney will be the easiest to remove, however the other two tumors and their location is what makes this difficult, tumor one is located in the lymph node that is right behind and touching my inferior vena cava blood vessel, the IVC is the vessel that brings blood back into your heart from the lower portion of your body.  Tumor two is between my inferior vena cava and my aorta, the main vessel that pumps the blood out of your heart.  As you can see, these two vessels are very important and have a lot to do with why a human is alive.  Now I know this may seem frightening to most of you, but still for me, it's not as scary as the cancer itself and what I could do to me.  So with that being said, the plan is to have scans the week of February 15th and see the surgeon again on February 22nd, if the scans show any shrinkage we will hold off on the surgery until we need to do and when I say need, I mean that if any future scans show any kind of growth, my butt will be on that operating table, no questions asked.  If the scans show stability with no shrinkage or growth or just shows growth we will move ahead with the surgery.  The surgery will involve the removal of the tumors along with anything else the surgeon sees that can come out, also if he sees any areas that have cancer cells but no tumors he will preform the HIPEC procedure.  The HIPEC procedure will happen after all removal and will consist of the surgeon filling my abdominal cavity with warm, concentrated (the good stuff) chemo, they will shake me back and forth for at least and hour and half (hence the nickname "Shake N' Bake), then drain the chemo out of my abdominal cavity, sew me up and then a long recovery in the hospital and at home will follow.  Whether the HIPEC is involved or not in the surgery, once recovered I will then do 15-20 sessions of Whole Abdominal Radiation, or WAR as I like to call it :), this will be over the course of 3-4 weeks and the radiation will be everyday, Monday-Friday and will cover my entire abdominal/pelvic region.  This process will take just about 5 minutes each day but the side effects are not going to be fun.  I won't share those now as I don't want to offend anyone :).  

Well, since the above is a total mouthful, even for me.  I will leave you all to process this because I can honestly say that I still don't understand it all :)

The final quote from probably the sexiest TV character of all time and I find it quite true every day!!

There's an old saying, 'That what doesn't kill you, makes you stronger' I don't believe that. I think the things that try to kill you make you angry and sad. Strength comes from the good things - your family, your friends, the satisfaction of hard work. Those are the things that'll keep you whole. Those are the things to hold on to when you're broken.

-Jax Teller

2015 Can Suck It, Bring on the New Year!!!

I am sitting here with about three and half hours left in 2015 and I am thinking back to January 1st, I remember thinking that 2015 is going to be the longest, scariest year of my life.  Well, it was and it wasn't.  2015 definitely had scary - cancer, surgery, chemo, the unknown of this disease I have but 2015 also carried some of the best, most amazing things that have happened in my life thus far.

The best thing that happened this year was Don, Liam and I welcomed the strongest, bravest, most wonderful little girl in the world, our little miracle, Sadie, she joined our family in February (thank god!!) and it has pretty cool being a family of four since then.  I still, cannot believe that I was so freaked out to have a girl, since I am not the girliest of girls and I was honestly terrified that I wouldn't know what to do with a girl.  I have now embraced the bows, frills and colorfulness that a little girl brings into your life and love it!!

This year has also let me reconnect with friends who I have not talked to or seen in quite a while, it is amazing to have these friends back in my life on a more regular basis even if we did reconnect because of this terrible thing that has happened to me but frankly don't care, it has made me smile just about everyday, that we were all able to pickup where we left off like time has not passed at all.

I have also made a handful of new friends this year, although I think that we all wish we didn't have to know each other, we do now, and it has been great getting to know each of these people and having them on this journey with me because they know exactly what I am going through.  I don't believe that this year would have gone nearly as well as it has without them.  We unfortunately were given this bond but I am so thankful that I found each and every one of you.

While going through treatment at The James, I was so lucky to have some of the most amazing doctors and nurses take care of me.  I was prepared to have the crappiest eight months of inpatient chemotherapy, but in reality I was the "Chemo Queen".  I kicked it's butt and took names, that was largely impart because of who was there to take care of me when I was in the hospital.  The 17th floor nursing/PCA staff was more amazing than I could have even imagined and I am not just saying this because I was the "favorite" patient that everyone fought over on my admission days :).  I say this because they work their butts off taking care of people who are not necessarily in a state to appreciate them even 10% of the time, they listened to my incessant rambling when I was bored and they spent time getting to know me and my family.  They treated me, my husband, kids, friends and family like we were all a part of their family.  I will truly never be able to repay their kindness, support and all around awesomeness they gave us!!

I have been so fortunate this year to have all of the time that I have had with Don, Liam, Sadie and my entire family.  At the beginning of 2015, I thought that not working was going to be the worst part of this cancer thing but in reality it was a blessing.  I have been able to spend all of my time focusing on myself and my family, enjoying just being with them and making great experiences and memories. Not having to worry about unnecessary time away from my wonderful husband and my kids and being able to just do things with them whenever I want, we were able to do so many wonderful things as a family.  It has taken so much stress and worry off of my shoulders.  They are the three most amazing humans in the entire world and just being with them has made me so happy.

I know there are so many more amazing things that happened this year, it would take me writing a book to name them all but I am most happy that I have had time.  I have learned in 2015 that time is really the most important thing to a person with cancer.  When I was "healthy" I was completely guilty of taking time for granted.  You don't really understand how important time really is until you are facing your own mortality, literally everyday you get to wake up.  I promised myself at the beginning of this fight that I wouldn't take any minute that I had for granted and I am happy to report that I have kept that promise and will continue to do so going into 2016.  I just ask that you also make that promise to yourself in 2016, never say, "I can do that tomorrow" because tomorrow is not promised to any of us, I have now seen that too often over the last year.  If there is something you want or want to do, just do it, I promise, you will never look back on it and regret that it happened.  Also, challenge yourself to say "yes" a little more in your life, it definitely makes life more fun and a little more interesting.  You will never now how your life can change unless you put yourself in new situations!!

As we enter into the New Year, I leave you with this pretty great and very true quote from a much loved musician -

“It's being here now that's important. There's no past and there's no future. Time is a very misleading thing. All there is ever, is the now. We can gain experience from the past, but we can't relive it; and we can hope for the future, but we don't know if there is one.” 
― George Harrison
I wish you the happiest of New Years!!!
Maggie

Surgical Consultation

Well, we met with the surgical oncologist today and the good news is I am not inoperable and he is very impressed with how I have responded to traditional "liquid" chemo.  He said that my PET scan from this past Monday looks amazing and I should be thrilled with how VAC/IE has worked for me in reducing the size of the three tumors I have.  Honestly, I was assuming that is how the PET scan would come out but you never know with this cancer, so I am officially relieved and maybe now I can get a little bit of sleep with my friend "Ambien".

Getting into the actual consultation he did reiterate that two of my three tumors are in a very tricky spots.  One being at the base of my superior vena cava blood vessel (the main vein into my heart) and the other one is right by my aorta (the main vein coming out of my heart), these are pretty important veins and if they are compromised during surgery it would bring a whole other slew of issues to deal with, including bleeding out on the table, harsh I know, but that is the reality I am facing.  The other tricky part about these two are that they are not in the peritential cavity in the traditional sense that we all know, they are actually just behind which would involve cutting into additional layers of fat and tissue and going into an area that surgeons would prefer to avoid if they can.  Not saying that he wouldn't do it if he needed to but just a place to avoid if possible.  We have always know that these two were in tricky spots and could be an issue when talking about surgery.  Basically, we are at the point of weighing the positives vs. the negatives of this type of surgery.  I know that the ultimate goal of this fight is to rid my body of cancer but considering my three tiny tumors are stable and being managed with chemo right now I am in a very good place with this cancer, most people deal with hundreds of tumors right off the bat and can't say they are in a good place.  I know that sounds weird to most but in my case it could be a whole lot worse!!

The plan right now is to present my case to the tumor board next Wednesday, which is where a whole group of oncologists (medical, surgical and radiation) along with pathologists get together to discuss cancer patients and their cases to figure out next steps.  The possible next step(s) for me are any of the following:

1. Traditional debulking surgery (removal of the lymph nodes with the tumors)

2. Traditional debulking surgery with the HIPEC procedure (removal of the lymph nodes with the tumors then having warm, high concentrated liquid chemo poured into my abdominal cavity for 90 minutes on the operating table, then drained - this is to kill any possible microscopic, rouge cells that are in the abdomen)

3.  Traditional debulking then some type of abdominal radiation (either full or targeted to the specific tumor sites)

4. Traditional debulking, the HIPEC procedure, then some type of abdominal radiation (either full or targeted to the specific tumor sites)

5. Just abdominal radiation (either full or targeted to the specific tumor sites)

As you can see there are many different options I am facing.  Going up against the tumor board will give the surgical oncologist an entire picture of what could or would happen after possible surgery before making any official decisions.  

We also did discuss that surgery could compromise my "good place" status because having surgery would prevent me from possibly being on any type of chemo for a significant amount of time because of the recovery involved, and since I have responded so well to chemo this could be an issue.  Also, surgery does put you in an immuno-compromised position to fight off illness and disease and this status could do more harm then good while I am recovering from a surgery in the sense that my cancer could spread or I could contract another everyday illness that would put a wrench in my next step(s).  Basically, we are dealing with a situation of "if it ain't broke, don't fix it".  

Cancer is a complicated disease and as you can see there is no black and white when it comes to how to fight this.  I have put my full trust in my oncology team and I know with their help I will make the best decision possible for my next step(s).  I wish it were easier and I could give all of you a definitive answer to what is going to happen but we are working in a situation that requires a crystal ball that we just don't have.  I will keep you updated once we heard back from the tumor board next week!!

What a Year...

Hi Everyone!  It's me, Maggie!!  I know that I haven't posted in a while but I thought today would be an appropriate day to start blogging again.  Two days from today will be one year since those terrifying words were spoken to me, "You have cancer."  Looking back at that day, I didn't think I could survive the rest of that week but here we are almost a year later and I am still smiling and enjoying everything about life!!!

This morning, I met with my oncologist and got the results to my most recent set of scans,which were yesterday.  Those pesky little tumors are still stable, they haven't gotten any smaller but they haven't gotten any bigger.  I don't know about you, but that is a huge win in my book.  I was relieved when he came in and said it, it has been a rough couple of sleepless weeks for me.  Ambien and I have become close friends :).  Since everything is still stable and I have pretty much plateaued with the current chemo regiment, VAC/IE, it was decided today that I would put the last two cycles I have left on the back burner (we will have them in our back pocket in the future if needed) and move on to the next phase of treatment.  Next Thursday, December 3rd, I will be meeting with one of the surgical oncologists that works with a lot of patients that have cancer in the abdominal area to see about having more surgery to try and get rid of these pesky tumors along with the lymph nodes they are living on.  I hope this can happen one way or another as I would like to get these ticking time bombs out of me :).  I will also be starting on a new oral chemo pill, hopefully in three weeks.  My oncologist's office has to get all of the paperwork into the insurance company so they can review and hopefully approve payment for this new drug called Votrient.  I am actually excited to start this one because my hair will grow back, it's really cold already and I am sick of my head freezing all of the time.  Also, I want my nose hairs back!!!  Having a consistent runny nose for the last year has not been all sunshine and roses let me tell you!!  I have learned a lot about taking things for granted this year, but I for one will never take nose hairs for granted ever again :).

I know since I haven't updated in a long while a lot of amazing and fun things have happened in our world.  In August, Don, his parents, the kids and I were fortunate enough to take the most amazing trip to Disney World.  We had the opportunity to stay at the most wonderful hotel and resort, The Hilton Bonnet Creek.  Let me tell you, if you are ever in Orlando and need a place to stay, please, please choose this hotel.  It was amazing and they were so amazing to us and took great care of my family while we were there.  I can't say enough good things and they also have this pool!!!

If this doesn't make you want to stay there than I don't know what will.  Disney World was so amazing and we had so much fun, but I really new that this trip was for Liam and for me to see him so excited to meet Mickey Mouse and have the most fun that a 3 and half year could ever have in his life.

This was his very first character encounter, I mean come on, look at his face.  That is pure joy and I know I got a little teary eyed.  I can tell you that this face and smile is burned into my brain for the rest of my life.  Liam and Sadie got to meet a ton more characters through out the week!!

 This little video was at the Disney Junior Live show at Hollywood Studios, Liam loved it as it had Mickey, Doc McStuffins, Jake and Neverland Pirates and Sofia the First.  He had a blast.  

 Meeting Chef Minnie!!!

 Chef Goofy!!!

 Chef Donald!!!

 None other than Chef Mickey!!!!

 Chef Pluto!!!

 Chef Mickey, located at the Contemporary Resort was well worth the money, great food and each of the characters spend a good amount of time at each table with the kids for autographs and pictures. 

 It's a Small World Grandma!!!

Sadie wasn't too sure of all of the little singing statues in It's a Small World

 Rafiki!!!

 I might make myself look like an idiot, but I learned something about Chip & Dale at Disney.  The only way to tell the two apart is that Chip has a nose that looks like a chocolate chip, hence his name.  Never knew that, however as you can see this is Dale, we never did find Chip that day!!

 We went to Storytime with Belle and the only way that you could meet Belle and get your picture taken with her is if you volunteered to be in the little play they put on, so me being the mother of the year, made crying Liam be in the play :).  Since he was so scared, I got to be in the play and the picture as well!!!  Thanks for the tip Stef!! :)

 The Haunted Mansion, watch out for those hitchhikers at Disney!!!

 Family Picture at Chef Mickey, not bad for 7am!!

 Goofy at Hollywood Studios!!

 The whole family on Main Street, USA at the Magic Kingdom!!

 This was about as close as we got that whole day, it was like 100 degrees with 90% humidity!!!

Headed into the jungle!!!

We made such amazing memories that whole week and had so much fun, we wish we could go there all of the time but alas, we had to return to the real world.  I do have to say that it was nice for at least a week to act like a normal, non-cancer family.  

In September, there was an amazing event that the Sarcoma Clinic at The James Cancer hospital put on called Steps for Sarcoma.  This event is held annually to benefit the doctors and researchers that work everyday at The James Sarcoma Clinic to find cures for all sarcomas.  I was fortunate for this event, like every day of the last year to be surrounded by everyone who loves me, whether they were near or far.  I am proud to say that my group Maggie's Madhatters raised $3,860 for the event.  We went into the walk 100 people strong and really showed sarcoma that it can suck it!!! :).  To this day, I still get comments from doctors, nurses and even other patients about how impressed they were with our group.  While we didn't get a whole group picture (which I am totally bummed about), here are some pictures from that amazing day!!!

These are only a few of what I assume were a ton of pictures taken that day.  I am still overwhelmed that so many people took the time to support me on that day, from near and far.  It was an amazing day for me to see such love come together not only for me but supporting all the patients that are going through the same battle as I am.  I love each and everyone one of you more than anything in the world and I couldn't ask for a better family or a better group of friends who are all like family to me.  I fully expect to make this a yearly event and I hope that all of you will too!!  

I want to leave each one of you with this, I never thought this year would go quite as well as it has.  I have read horror stories about my particular type of cancer but I know that because I am surrounded by each and everyone of you, with your love and support I can fight this with all the strength I have in my body.  Here is to hoping that this next year goes as well as the last!! :)