trial info

I have all my tests next wednesday, starting at 7am. It is going to be a long day for us, as they fit them all in one day. Then the following wednesday, November 5, I start the trial with the IV drug. The first infusion is an hour and then I have to wait around for 3 hours after to see if I have any reactions. The other drug is a pill that I take each morning. I get the infusion 2 weeks in a row as well as take the pill and then I get a week off from both. They said that the second time I receive the infusion it can be done in 30 mins and I only have to wait around for an hour after to make sure I don't have any adverse reactions to it.

The trial can be found here if you are interested in reading about it
http://clinicaltrials.gov/show/NCT01988896

I feel very fortunate to have been chosen for this, I am the first one at Mass General on the trial (which kind of freaks me out). The Dr said that there are hundreds of people wanting in on this trial and she somehow chose me. I do have the KRAS mutation they talk about on the website so I know that was a deciding factor but I am sure she could have found someone else that fit the bill. I just feel so blessed that things fell into place as they did and want to express my gratitude for everyone constantly praying for me, I feel as though God made this happen and I have everyone to thank for their prayers. I also of course continue to pray that these drugs are effective in shrinking the tumors!!

bad news and good news

I sit here holding my breath, could something good actually be happening to me?  Let me start from the beginning...
  On our vacation a few weekends ago we sat with a pulmonologist who works for a pharmaceutical company.  He was telling the man next to him how they had just developed this immunotherapy drug that is shrinking tumors and that it has already worked on melanoma and was on the fast track to be approved in 6 months by the FDA, and has been approved.  He said that they are now testing it on 30 different cancers and it has little side effects.  Wowzers, sign me up!  So after hearing all this when I got home I got in touch with the Dr that I talk to about clinical trials at Mass General.  She told me that she had a trial similar to this with a drug that wasn't actually the one I had heard about but a different drug by another pharm company and that she could add me to the list.  (This didn't mean  much to me, you can be on waiting lists for a long time for trials)  I then proceeded to try to find a trial with the actual drug I had heard about and thought I had found one that I qualified for.  After many phone calls I found out they weren't accepting colorectal patients right now.  Big sigh of dissapointment...as I have been experiencing some concerning symptoms and wonder if the chemo is working.  Then I go to my apt monday and the Nurse Practictioner thinks we should do a scan instead of treatment to check things out.

I got a call mid day yesterday from my oncologist, realizing they would only call with bad news I cringed as I answered the phone.  She told me that the spots on my liver had grown.  She said that she would recommend adding in the drug that I am refusing to take (the one that makes me throw up before I even get home) and I gave an indication that was not happening, she then told me that my dr at Mass General had just called her asking how I was doing and telling her that she had an opening for me on a clinical trial.  The same one I had emailed with her about a few weeks ago.  These open slots are hard to come by and you have to have been without chemo for so many weeks to qualify so they are competitive and you have to jump on them.  She proceeds to tell me that the following day I need to sign consents and get this thing rolling. I was able to get an apt for today and have the research nurse send me the consent forms to read before the appointment.

The great thing about the trial is that it is a Phase B1 which means they have already come up with the therepeutic dose necessary (the other trial I had been following was only at the stage of determining the highest dose tolerable).  They are focusing on efficacy now (great to hear!)  One of the drugs is an antibody  (a protein produced by the body's immune system) that may help the immune system stop or reverse the growth of tumors.  The other drug acts by blocking a protein called MEK, which has been linked to the devlopment of growth of multiple cancers.  Basically it makes the cancer visible to the immune system so that it can do it's job.     

So I signed the consent forms and I am going to have to go through a series of tests to make sure I qualify.  I have to get an ECG, an ECHO, possibly a biopsy, an eye exam amongst other things.  This all has to happen at Mass General, so lots of driving back and forth to Boston.  The one downfall to all this is how long will it take before the drugs start working?  I'm already experiencing a lot of pain from my tumors on my belly making it difficult to sleep and also just function day to day.  I am very nervous about fluid accumulating in my belly as that causes such discomfort. 

So I am thanking you all for your prayers, this seems like exactly what we've been waiting for and wanting and hoping and praying for!  Let's just pray that everything from here goes smoothly and we can get this thing started and shrink those tumors!  I'll keep you posted on the tests and everything, my faithful followers! :)

Scan instead of chemo

I have had a lot of pains lately as well lots of stomach issues.  After filing my list of complaints today they wanted to hold off on treatment until next week.  I am also getting a scan done today to see what is going on.  Will keep you all posted.  Delaying treatment a week throws off everything.  I was supposed to be on an off week for Thanksgiving and Christmas and now that is a chemo week.  Like my mom said, only thing worse than chemo is not getting it.

a nice card :)

A friend of my mom's sent a card along with her and upon her return last night I got to read it.  It is so fitting to my situation that I had to share:

"They say what doesn't kill you makes you stronger.  Well, what if you didn't sign up for extra-strength training?  What if you'd rather catch a few breaks once in a while?  Is that so much to ask?  At some point, you'd think you'd be entitled to a free pass or two:  skip this challenge.  Avoid that crisis.  Delete those problems.  It's not that you're not strong or that you don't have what it takes to get through this.  You are, you do, and you will.  But you've built enough character already, and it's time for things to lighten up a little!  I know it's not really my call, but if I were in charge of life's wheel of fortune, you'd get a free spin.  And I'd be right there, cheering you on!"

An extra week off

So I thought I'd be feeling better than I do this week being off chemo an extra week.  I am exhausted and dreading going in on Monday.  I try to get all my errands done and take care of everything I need to knowing ill be in bed all next week.

The weather has been so nice, being so warm out especially after a cold weekend away.  I am dreading the winter!  I am already planning a trip to Arizona!

I have a fun weekend planned with a wedding friday and I'm taking Elly to see Cinderella Saturday with friends.  Sunday before chemo is always hard for me, so pray for me that day if you can.

Our vacation spot

We decided to see if our favorite place to go on vacation had any cancellations their closing weekend and low and behold they had the room available that I've always wanted to stay in.  It is in the adirondack mountains and has a screened in porch!  We came here this summer with Bryan's family and they do family seating for dinner.  You might remember me talking about this last year.  So during the Summer we have such a large group we don't sit with anyone but our family.

This weekend its just the 4 of us so we are sat with other families.  i feel like i have no life and nothing to offer to conversations so i try to just ask people about themselves.  I have such a hard time when people ask what I do for work.  The first year I was out of work and had all intentions of returning I used to talk about my job but now that I've been out of work for over 2 years I have a hard time pretending I still work.  I just feel like telling people I stay home with drew is fine but its not really the truth.  But the truth is a huge bomb to drop and its an atomic one that you can't just leave on the table and walk away, yet we live with this bomb.

Something to ponder

A friend of mine shared this quote lastnight by a holocaust survivor, Viktor Frankl, "Suffering presents us with a challenge to find goals and purpose in our lives that make even the situation worth living through."

I had to hear this several times in order to comprehend the meaning.  For me, suffering is such a constant state I'm in that I found it hard to comprehend it having a purpose.  Actually the harder part for me to hear is the living through part.  If this means I end up alive in the end then I can tell you that I have certainly gained a deeper purpose in my life and a whole new set of goals.  If the outcome is that I'm a beautiful dragonfly then it might take until that transformation happens for me to find a purpose in all this suffering.  But never the less I am still living through it so it must be worth living through.

like a rock

I have been wanting to do this hike near my house for a while now because it has a beautiful view (minus the tractor!) and I used to go when I was little.  I took my friend, Missy, that is visiting there today and got to lay on a rock sort of in the sun, it was windy but I did it!

just trucking along

I did not have a great week, with treatment on Monday I wasn't feeling very good on Thursday, throwing up again and just overall not having a good day keeping food down.  Today isn't that much better, but at least not getting sick.

I am missing the kids soccer game, partly because Elly won't play when I go she just wants to sit it in my lap and Drew seems to be into it I hope they both play today without mommy there.  Not feeling well enough to go today though, my stomach is still off. 

not much else to report.  I am getting an extra week break from chemo because of the holiday and a wedding we are going to.  I am so looking forward to that extra week where I will hopefully feel great.  my mom is taking advantage of this time and going home for a few weeks.  I am nervous to do things without her here as she mainly takes care of kids and everything household wise that I can't do.  I have a friend flying in to help out next week and then bryans mom will be here so hopefully we have everything in place we need.

Such a balance life is, and it is constantly changing!

I chose Heaven over Mars

http://www.texasmonthly.com/story/honey-i-want-move-mars

grass is always greener

You ever play that game, "would you rather?"  Sometimes I do it with cancer.  I have to say, cancer always loses.  I would always rather have something else that doesn't involve death at the end, obviously.  So like the title of this post, the grass is always greener.  Obviously these other ailments I come up with involve pain and suffering but they're not what I have, or what I've experienced so it must not be as bad, but who knows.  We all have our ailments we suffer with and have to deal with and life just isn't fair, I learned that one a while ago.

It isn't without its blessings though.  We have this book we've been working on with my daughter Elly, who is 5.  The book is about someone with a serious illness in the family and it is made for children to cope with loss and change.  It asks her to lists the changes our family has gone through since I became sick and then we circle those changes based on how hard they are for her or possibly put boxes around them if they are good changes.  We decided my mom moving in was a good change and that me not working anymore was a good thing because I got to spend more time with her.  The hard to deal with changes were that mommy used to be happy and that mommy goes to the Dr a lot and that is hard for her.  The fact that my daughter thinks I used to be happy was a really hard one for me.  But this book in itself is a blessing if we can work through these things together.

I have to say I am usually in a pretty bad mood the sunday before monday chemo.  Need I explain more on that?   I had a good week, I was really active and it was great to be out of the house so much because all last week I was in bed and I imgaine that this next week will be the same.  I cancelled my MRI apt on friday because it was supposed to be gorgeous out and I did not want to spend one of my "good" days at Dana Farber!!!  I went shopping instead!  Of course one reason I cancelled is because my leg wasn't bothering me much and then last night I ended up in the chair again because of it, go figure.  I really think I have a tumor pushing on a nerve and if the MRI confirmed that, honestly I'm not sure what good that would do me.  When the nurse requested the MRI she didn't go over what it would show and how it would be helpful, that would have been too convenient.

I'm having a lot of trouble sleeping, I am completely exhausted and wiped on and off throughout the day and for some reason I have trouble sleeping at night.  Even my good week involves only being able to do short lengthed activities and needs to involve a lot of sitting or laying down.  Because of this I need help with the kids even on my good weeks.  I am still working on gaining back my strength from when I got really sick a month or so ago and lost lots of muscle.  My kids are too heavy for me to carry most of the time which always makes me sad.  Part of that is that they're getting bigger but my son is only 3!  He is allowed to want to be carried still I think.

As I'm blogging this I'm feeling like i'm just starting to list a bunch of complaints so I feel as though I should end this.  We had an amazing night last night at a friends house doing a bondfire and singing and prayer for me.  What a blessing to have so many that show their love constantly and lighten my heart.  Thanks everyone who came.  Let's focus on the good!

I need a filter change

So I had this realization last night that I need a filter change.  What am I talking about?  Well, I realized that I have a filter that every thought goes through and it gets put into two categories, chemo or cancer.  I am going to try to explain this the best I can.  Anything and everything I talk about, think about, relates back to these two things for me.  I never really thought about it before, until I realized that I couldn't really help myself. 

Here's an example of the cancer thoughts:  Bryan and I had our 8 year anniversary yesterday.  We had an amazing lunch out at the Boat House Restaurant and sat by the water in the sun and it was just absolutely amazing.  Couldn't have been more perfect.  Then I say, "we should do this every year!"  And immediately I catch myself and think, will I be here next year?  Or the year after that?  Now I'm sad, I've ruined this moment that I was in because I wanted to think about the future and that makes me sad because it is so unknown. 

Anytime someone references anything in the distant future it gives me a lump in my throat.  Will I be here?  How old will the kids be?  Will they remember me?

Now here's an example of the chemo thoughts:  I can't get away from planning my life around chemo.  Anything and everything anyone asks me to do or attend revolves around, will I feel good enough?  Do I have chemo that week?  Can I attend my daughters open house?  Can I attend my son's music performance?  Can I go to that Cinderella Play that I booked 3 months ago with friends, will I feel good enough?  Do I want go to lunch next week with friends? Yes, but can I?

I don't mean to sound like I'm complaining, this is just my life.

Photo from Yesterday, 8 years!

Had a good day

I am a week out from chemo and I walked the beach today, went to lunch and had a really good day.  More than I had done all last week for sure!  I just wanted to tell everyone that I was smiling today! :)

Acts of kindness

So many of you have reached out to me in so many ways!  We had someone completely decorate our front steps for fall!  People are dropping off gifts left and right, fun spoil me gifts and needed ones like water and snacks.  Thank you all so much for your generosity and thoughtfulness!  It truly warms my heart!

really nauseas

I had an OK day yesterday, not great.  I had this weird vision thing I get and we can't figure out exactly what it's from and still working on how to correct it.  It is gone today so far, so we'll see. 

Hoping for a nice Fall day where I can at least get outside to sit for a little bit.  Today please pray for my nausea and my heart, it feels heavy today.

MRI

So as I lay in my chair at 3am I realize I'll probably be awake for 2 hrs because this what the steroids do to me.  (Why not blog?! )However we think the steroids helped last time so its hard to not take them.  The reason I'm sleeping in the recliner is that I have the sciatic pain back that shoots down my leg.  I have seen 2 chiropractors who couldn't help me.  Now the oncologist wants to do an MRI of my spine to see what's going on.  Likely there are tumors pressing on nerves.

I'm really looking forward to the Fall and hoping I'm feeling good for all the festivals and the weather.  Last year on our 7 year anniversary, September 23, i found out the cancer was back everywhere in my abdomen. Lets hope this 8 year mark is a little better.  We have a few weddings to go to and that's always exciting!

Back to sleep, I hope!  God bless everyone!  I hope you're sleeping!

I like this song

A dear Aunt sent this a few weeks back, I love the lyrics of the song and the cute claymation doesn't 
Hurt.  I'm trying to take in the good!!
http://www.rickhanson.net/resources-children/taking-good-claymation/

Chemo tomorrow...

I wanted to make sure I blogged just so everyone knows that I am getting treatment tomorrow.  I ended up with a nasty virus and I am finally starting to feel better so I am very reluctant to give up this foreign feeling of not being miserable only to start all over.  I am having a very hard day today with this so please pray for strength.

Hey thanks to all the Bills and Tinas!

So my 3 year old has taken to calling anyone and everyone Bill or Tina. He thinks he's pretty hilarious and frankly so do I.   Hence the title of this post.  I felt compelled to blog and thank every Bill and Tina who has been praying for me.  I had a decent day today, I even ate a sandwich!  I feel as though there is some light today and that's a lot to be thankful for!

half a day at a time

I have been so reluctant to blog because I haven't had the heart to sit here and tell you all what I have been experiencing and going through the past week, mentally and physicaly.  But alas you are my loyal followers and I know you're still there and you deserve an update!

I was violently ill this past week with vomiting and sweats and misery.  I was in bed for a week from the chemo and that was only from the pump drug not the main ingredient that used to make me really sick.  We aren't sure if all of my symptoms are from the chemo, the chemo and the cancer, or both.  I have a new tumor that feels very large that pushes on my diapgrham.  I am not sure if this is the root of my eating problems but I have a very hard time eating and keeping food down.  This has been going on for like a month, the eating problems.

I have a constant internal struggle about how much suffering is worth staying here on Earth for.  I love my children and my husband my family so dearly but the suffering is just too much sometimes and fogs my head and makes me feel torn between just wanted to go to heaven to be at peace FINALLY and to end the suffering that seems to be so constant for me.

As I tucked my daughter in last night she said, "mom do you think you'll be sick tomorrow?"  Please pray for a good day, positive energy, hope and light.  Please pray for my eating and my children and my family.