Tuesday scan and treatment

Tuesday will be such a long day for me, we need to leave before 7am to get up to Boston.  I have a scan and then treatment.  I won't get results of the scan until probably the 2nd as my dr is out of town.  I am not too concerned with results, if it shows a little growth I will be surprised although it is expected with this kind of treatment.

I continue to get severe cramps early afternoon every day from the pills I take for the treatment.  We haven't been able to find anything to relieve that yet.  I get my week off starting next wed and I look forward to that as I get pretty immediate relief after stopping them.  The rash has gone away although something appears to be starting up again but nothing severe like last time.

Trying to enjoy extra time with kids as they are on Christmas break this week.  Keeping a 3 year old boy entertained indoors can be pretty hard!

my full time job

I went to a work Christmas party last night.  I miss working to do a degree, I miss the social aspect and I really did love what I did, so I do miss that.  I love the company I worked for and all the friends I worked with.   I am grateful that I get to spend so much time with my kids though.  I feel like my new full time job is being sick, or should I say, getting better.

The first year I was out on long term disability and I would dread the phone call from the guy assigned to harass me to make sure that I was really still sick and needed to be out.  Now I'm on disability through the government and since my status is considered metastatic they do not harass me anymore, which is nice.

Some days I truly wonder where the time goes.  I do of course have two small ones to look after so that is where most of my time goes.  Even being in the hospital for treatment and being gone for 12 hours it seems to go by fast, I think there is like a hospital time warp or something.  Anyone else know what I'm talking about?

I day dream about getting cured and if I would ever want to work again.  I picture myself being super skinny and drinking only green drinks and being the weird lady that lives on the corner of Acorn and Carriage that juices all day and only eats raw vegetables.  I could start a blog about how I beat cancer and share all my juicing recipes...aaah maybe some day...

Then there's the days where I wonder if I'll be here in a year.  What dying is like and how I really don't think I can handle chemo again if/when it comes to that.  When I feel good and attend events like the Christmas party it is just so hard to believe the life I really live and the prognosis I fight daily.

But alas, these are the cards I was dealt and this is the job I do every day.  There is so much suffering in the world, and I don't have it as bad as some people.  I type these words nestled in my living room with my warm laptop heating my lap, sitting on a couch with heat in my home as it is FREEZING outside.  My christmas tree glistens in the corner of my eye along with my family snuggling on the couch watching Frosty the Snowman.  Doesn't sound so bad does it?

Anonymous

"Anonymous" is how a lot of your comments show up in my email if you don't log in to leave a comment.   It has become comforting to see it show up in my inbox.  I still love getting comments!  And so many people anonymously read my blog, and thats ok too!  Someone recently left an anonymous package at my door, love that too! :).   Also got an edible arrangement from an anonymous friend, yum!  how spoiled am I?!

But the reason of this post is actually to comment on some wonderful people that have been brought into my life recently.  I just think about how these people were in a way anonymous to me at one time and now I feel like they were brought into my life for a reason.  My new clinical trial nurse and my new palliative care Specialist.  For those that don't know, palliative care is kind of like a symptom management person who helps with side effects from everything, the cancer and the medicines, especially the trial drugs.  These two people spent a lot of time with me today and just warm my heart with their care, concern and devotion to making me feel good in so many ways.  I just feel really blessed with the team I have and wanted to share that I am in great hands and feel so lucky to have these people on this journey with me!

Well that Was good while it lasted

I am back in the chair with everything hurting from my leg to my side tumors.  I am on my off week from the pill and all I can think is that the pill was working.  It causes quite the rash though and nothing they've given me seems to be helping.  I feel like its finally getting a little better but I am supposed to start the pill today so it will only get worse.

Wish me luck today, I don't want to miss the treatment just because of a rash if its working but it's a pretty ugly rash!

Between the sheets

Now that I have your attention!  As you can see by the title of the post I am writing a romance novel in my spare time...Just kidding....the real reason for the title is that I am sleeping in a bed again and I just love the feeling of sleeping between sheets compared to my recliner with a blanket.  It's the little things right?!  The tumors on my sides aren't painful like they use to be and the fluid I had is gone, and the shooting pain down my leg is gone.  Lots of things to be thankful for, I want to say the drugs are working, we will see what the scan shows in a few weeks, but we all know what matters is how I feel and in that regard I'm on no pain meds and that's a great thing.

Since my mom and I didn't get to go on our vacation to Tucson we have decided to make the best of the week and stay at her friends little cottage in middletown.  Although we didn't have the greatest of starts to the week, we spent the entire day Monday in Boston at Mass General because they wanted to see me for my rash, so its a good thing we didn't go away.  They ended up giving me a steroid which I haven't noticed helping yet except that it seems to be helping my appetite.

We did get to spend yesterday doing some christmas shopping, and I had wanted to get the kids build-a-bears for christmas with my voice recorded in them and we accomplished that mission.  It's such a cute concept and I did the whole routine of getting their heart beat going and making  the biggest wish in the world to put inside the bear, we all know what the wish would be and it was a little hard not to get emotional in the build-a-bear workshop but I held it together.  Then I got to pick out the cutest outfits ever to accessorize them and spend way too much money!

The pills i'm on for the trial are causing the rash so thankfully this is my week off as of today from those.  So hopefully between the steroids and not being on the pills we can get that under control.  It is really painful on my face and of course makes me self conscious of what I look like.  It's pretty easy to conceal the back and chest in the winter.  They also told me to stay out of the sun so this rainy week in New England is actually better for me than the sunny week in Tucson I'm missing!  Everything was meant to be I guess.

Now the rash

I was warned I'd probably get a rash from the treatment.  It started on my nose and is spreading all over my face and chest and back.  I'm hoping if I call Monday I can get something to treat it.

I've decided not to travel to Tucson.  I am just too exhausted and sick for the trip.  I can postpone my tickets until when its even colder here, still something to look forward to.

A rough go of it

Where do I start?  I ended up going to the ER on Sunday for a bladder infection.  They put me on an antibiotic but unfortunately I seem to have a reaction to the pain meds for it, threw them up twice now so I just have to suffer through the pain.  I have had horrible tummy trouble which I found out today is all from the pill form of the treatment I'm on, very discouraging to me.  I was put on another antibiotic today because my infection is resistant to the first antibiotic as the symptoms started to worsen yesterday.  I was able to get treatment and I have been gone from home almost 12 hrs and am just now leaving Boston.

I am very discouraged by the side effects from the trial.  Also I have been warned my infection might be resistant to this next antibiotic And if I develop a fever they will have to admit me to give IV antibiotics and it will interfere with my trip to Tucson.  Lets pray this round works!

Happy Thanksgiving

I was able to get my pill part of the treatment yesterday.  It was a long day just to get blood work done and get some pills!  We made it home safely from Boston in the wintery mix, which thankfully turned to rain.  My kids are pretty dissapointed that we don't have any snow here.

I am so thankful that I am on this trial.  I have accumulated more fluid and it is really uncomfortable and painful.  I don't know how long it will take before I have enough to get drained, but lets just pray that these drugs help shrink the tumors so that the fluid stops accumulating.

I am so thankful for all my friends and family who have been so supportive of me during the past 2+ years.  I am so thankful for my husband who stands by my side through all of my suffering, as well as my mother.  I am so thankful for my children.  A friend told me the other day that I smile when they come in the room no matter how miserable I am.  I don't think I ever noticed that, but I sure do smile just thinking about them.  I am thankful for my brother who makes me laugh no matter what and my dad who can fix anything that's wrong in our house and continues to come back to visit even though we keep putting him to work!

I am thankful to be alive!  Most people with my diagnosis live about 2 years, so just to be here today is a gift, I really have a hard time imagining living through 2015, but hopefully with this trial I will be here next year.  Have a good thanksgiving, and please be thankful for everything you have, including your health!

Feeling better

I am supposed to call my nurse tomorrow and report on fever and everything.  I haven't had a fever for a few days and I am feeling a little better.  I am very nauseas all the time so that has been a struggle but I was able to go for a walk today and get out in the sun.  The plan is to go Wednesday to get treated.  They will only give me the pill.  The IV treatment will stay on schedule, and I will go the following week for that.  That works out for me since my mom and I have tickets to go home in December and hopefully I'll be well enough to make that trip.  Not altering my IV schedule allows us to keep our tickets as they are.  It's only 6 days but will be worth it for that warm sunshine!

Hope

I am still going up to Boston tomorrow, we will see what they say.  My temp has been staying down near 101 which is better than close to 103.  My lymph nodes are still super swollen on my neck and my throat still hurts.

Earlier today my 3 year old son, Drew, brought me one of my Alex and Ani bracelets randomly and said I want you to wear this and it is the one that says "hope".  Still trying to have Hope!

Sick again and sick of it

I have had a sore throat for about a week and ended up with a high fever past few days.  I was able to get In to see my primary and get on antibiotics.  I am not sure how this effects the trial, I might not be able to get treatment this week, I will find out.  Bummer about that but really hope this antibiotic will help me feel better!

The wedding

The wedding was so much fun!  I got to dance and hang out with family and I actually felt okay.  It was a beautiful ceremony and reception right down the street from us at the Glen so that was super convenient. Here are some pictures from the event!

                                                            Me and Bryan

                                                          Me and Rachael (my cousin)

                                                         me and my mom

 my mom, my brother and me

Friends

I have a friend who comes over all the time and gives me pedicures and foot rubs and I don't have a picture of that, but I had a few other friends come over today and Cady, my friend from work gave me a foot scrub and rub!  My friend Dawn took a picture so I thought I'd share.  It is always nice to have a good visit with friends to boost my spirits!

I survived

I had a very long day!  It is 5:00 and we are leaving the hospital just in time for rush hour.  The whole trial process is so interesting.  Blood work is done first and then the dr visit.  Then it takes them 2 hrs to mix the drug, so lots of waiting.  I get multiple EKGs and lots of blood pressure readings throughout the visit.  I will not get my oral pills for another 2 weeks.  The nurse told me that I really shouldn't get any side effects from the drug I got today, although some people have flu like symptoms.

I actually got a little foot massage today and accupuncture so that was kind of cool.  I like mass general so much more than Dana farber although it seems like when you are in a trial you get different specialized treatment than when you are just getting chemo.

I am exhausted and have a headache but anxious to get home and see my kids.  Thanks for all the messages and prayers today.  They were much needed for my head and my heart.

Nausea, aches and pains oh my

I have felt pretty awful the last couple of days.  I've been sleeping in the recliner, my tumors are so painful I can't even lay on my sides for a second.  I have some fluid which causes horrible cramping in my back and my abdomen.  I am nauseas also I believe from the fluid.  The suffering is so hard, it makes me think a lot about death because I have to believe that there is no suffering in heaven.

This trial has to work, please continue to pray for me.  One of my cousins is getting married Sunday and I so badly want to attend the wedding and feel good.  I  want to be able to eat and not feel sick, i want to visit with my family, i want to dance!  i just want to be normal again.  I am so scared and nervous about the trial because I feel like its my last hope right now.  Like my brother always says I just have to stay alive until there is a cure.

Heading to Boston now, if I feel ok I will try to update you all later!

I'm in!

Just received word from Mass General that all the tests looked good and I'm all set to start Wednesday!  Praise God everyone and celebrate for me!!!

long day yesterday

Everything seemed to go well yesterday.  We don't have the results of the ECHO but the EKG and the eye exam went well.  The nurse will call with results of the ECHO and also let me know if they were able to obtain enough of my tumor samples to not do a biopsy.  I sure hope so!

We are scheduled to be back up for my first infusion on Wednesday the 5th at 10am.  I am both anxious and nervous about all of this.  I want to get on the drugs ASAP as I have been experiencing a lot of pain and i am really worried about having fluid build up in my abdomen as that causes so much discomfort and eating problems.

I am going to try to enjoy this next week before I start treatment and hope that I feel well enough to continue to get out and get things done before I start.  Some side effects they mentioned I will likely experience are a face rash and flu like symptoms.  Neither sounds fun!

Please keep me in your prayers as we have such a long unknown journey ahead of us!

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.

On the way to Boston

I am on the way to my apt today and I have received a ridiculous amount of texts and emails and I am trying to bundle up all that love and use it when I get chemo today.  Thanks everyone for the love!!!

Night before kindergarten

I have decided to surrender to chemo, or at least that's how it feels.  I have been experiencing a lot of pain and discomfort from the cancer that the chemo will hopefully help with but of course it comes with its own pain and discomfort.
 
I want to try to start with just the pump but I haven't had that conversation with the dr yet.  Tomorrow my daughter starts kindergarten so that's what I'm focusing on.  I have a scan Wednesday to get a baseline of where all the tumors are before we start.

I guess my thought is that I can use chemo to stay alive until a good trial comes along or a miracle.

I have never asked the dr how long I have left.  I feel like its bad to get those numbers in your head.  I do know that the chemo prolongs your life an average of 2 years and that's how long It's been since I got diagnosed.  Every day is a gift.

The Dragonfly Story

The Dragonfly Story 

By Walter Dudley Cavert 

“In the bottom of an old pond lived some grubs who could not understand why none of their group ever came back after crawling up the lily stems to the top of the water.  They promised each other that the next one who was called to make the upward climb would return and tell what had happened to him.  Soon one of them felt an urgent impulse to seek the surface; he rested himself on the top of a lily pad and went through a glorious transformation which made him a dragonfly with beautiful wings.  In vain he tried to keep his promise.  Flying back and forth over the pond, he peered down at his friends below.  Then he realized that even if they could see him they would not recognize such a radiant creature as one of their number.  

The fact that we cannot see our friends or communicate with them after the transformation which we call death is no proof that they cease to exist.”   

I need a pep talk

I have been putting off blogging, I feel like I'm letting everyone down.  The scan showed growth in existing tumors and also showed new growth in my liver.   I think the most upsetting part is that it has  spread to a new organ.  I remember when I discussed doing an alternative method with Bryan he expressed concern about it spreading while off chemo.  I hadn't even really thought about it, spreading.  Once again I wasn't even thinkin about that being a possibility but alas that's what happened.  I was kind of expecting the existing growth, but not this.

I don't want to give up hope but it is so discouraging!  Of course the Dr wanted me to do chemo and I told her no way  that was happening today.  We decided to just wait another month, do another scan and then discuss.

I am having a really hard time with this news.  My son was just potty trained and it feels like he's really turning into a boy.  When I think about what is happening in my life right now the only way I can think of to describe the pain is to say that it feels like my children are being taken from me.   I so badly want to see him as a teenager or meet his grand kids but there is just such a slim chance of that happening.  I want to see my little princess get married and even just go to prom and see her get so excited about the shoes and dresses!  It feels like all of that is being stolen and it is the most painful worse feeling I can ever describe.

I also of course am terrified of how I will die.  I can't be on chemo until I die but also know how sick I will eventually get while off it.

I wanted to explain to my daughter why I've been crying all afternoon.  I told her that I was told by the dr that my new medicine isnt working yet and it makes me very sad.  She turned to me, smiled and said well then it will work eventually just wait longer and hopped off my lap.  Lets just hope it's that simple.

Every day is different

I had a really good day yesterday.  My back and leg pain has finally subsided and I felt good.  Then this morning I woke up with a stiff neck and nausea. Thankfully as the day went on I felt better.  I think the nausea can be from the fluid.  It feels like the fluid is bothering me less lately as far as cramping goes though.

I have had so much fun with the kids this past week.  We got to go out on a sail boat and swim in a pool and go to the beach and enjoy the summer sun!

I get my results of my scan Friday, tomorrow. I would not be surprised if there was growth after all my symptoms so we'll see.  I will let you all know!

Vacation is over :(

We are on our way back from vacation.  I am dreading going home because it means I have to go back to reality, back to being a sick mom who is terrified of the future and what it holds.  I have a scan Friday and I'm expecting to see growth.  I have one tumor on my right side that has grown enough that I can't lay on that side anymore.  I continue to have trouble sleeping because I have pain down my leg and my back.  I think it is from the fluid I now have.  The fluid prevents me from sleeping on my back or stomach so it is definitely sleeping In the recliner for me.  Which will actually be nice, I could have used one on vacation.

Vacation was amazing.  We met Bryan's mom and step dad, dad and stepmom and his brother for the week up in the adirondacks at a lodge.  It is on a lake and there is a private beach and canoes and kayaks and lots of fun!!  Best part is it includes breakfast and dinner and they make great vegetarian meals!  It was so great to see my oldest at 5 playing and experiencing the place her dad grew up going on vacation at.  And of course my now 3 year old had a blast in the sand!

not feeling well really makes me scared.  It reminds me of last year in September when I was so sick and felt like I was dying.   The chemo has made me gain a lot of weight and I think that leads to my discomfort and scares me.  It's hard to tell what is from fluid and what is from the weight and what is normal anymore.

I haven't lost hope that my method is going to work.  I think the medicine I'm using needs to be in my system longer  to work. It will be challenging to continue to suffer and not want to give up on this one hope I have right now.  Pray for me.

another birthday

I have found it to be very challenging to be in this new situation I have created for myself.  I have had a lot of painful cramping from fluid I guess.  I am constantly wondering if my new drugs are working or not.  I can't really find out for sure until August.  I am hoping that I am not experiencing worse symptoms before August like needing to get drained or something worse.  I have started sleeping in the recliner again.  I had to do this a year ago when I was really sick again and had so much fluid I couldn't lay down.  I have some back/leg pain that I am not sure where it is originating.  Not sure if it has anything to do with the fluid since I also experienced this same pain last year when I had all the fluid.  We are trying to go on vacation in a few weeks so I really hope we can go on our trip as planned.

I constantly go back and forth in my head thinking that what I'm doing is working and I will be cured and I can use my blog to tell everyone all about this new cure and save lives!  Then I get freaked out thinking about my birthday coming up on Tuesday and I keep thinking what if this is my last one?  I always like to make a big deal about birthdays and remember everyones.  I am excited to be celebrating another one and really hope it is not my last.  My sons birthday is also coming up soon, a few days after mine.  I am so grateful that I get to see him turn 3!

Birthdays can be hard for me these days but I am just so grateful to still be here and to be spending time with my kids and getting to see them everyday and watch them learn and grow.  Life is so precious and unfortunately it is crazy things like getting cancer at 32 that really make you appreciate what you have. 


Me and my birthday buddy!

July 14 dr apt

I had my drs apt today.  My tumor markers are good, not elevated at all.  I had an ultra sound done, they saw a little bit of fluid.  I have some cramping from it.  I don't feel as though the fluid means anything.  The method im using requires a slow steady increase of the medication.  I feel like even there is fluid it is just because I don't have enough of the meds in me yet.  Being hopeful anyway.  We have a scan scheduled for Aug 8 and hope to see dr to discuss on aug 11.

I was able to go away on vacation a few weeks ago and I have another one coming up in a few weeks.  I feel like I'm really going to enjoy summer!  So appreciating the sun!!

I am feeling good.  I am still running, and enjoying time with the kids.  Right now my mom, brother and dad are here.  We are enjoying time together and having fun!

side effects

I of course am praying that the alternative method i'm trying will be successful and will make my tumors shrink.  While I am not getting chemo I am thoroughly enjoying not having the following side effects, although there are some that never seemed to go away from last year when I had chemo.  Unfortunately there are so many more, and there are ones that will appear late in life or never go away.

Side Effects from my chemo, avastin and anti-nausea drugs:

bloody noses
headaches
brittle nails splitting and making fingers bleed
fatigue
nausea
vomiting
chills
weight gain
super sensitive gums and teeth
super sensitive to sun exposure
diarrhea
constipation
neuropathy
bladders spams and bladder sensitivity and pain
mouth sores
insomnia
intestinal cramping
hair loss and thinning

I really feel like I am truly able to enjoy life this past week.  I don't have the upcoming doom of my chemo treatment and I don't have to not make plans for a whole week while i'm not feeling well.  I am running and feeling really good, it's so nice to not have at least a few of the side effects from the poison!

Time to try something!

The drs visit actually couldn't have gone any better if you ask me!  She was fully supportive of "taking a break" from chemo and said that its a reasonable decision right now.  We didn't define what a break meant I think we are just going to see how it goes.  I will see her again in month to get tumor markers measured and get examined.  The dr even said that she is trained to work with chemo and that some of the other alternatives have been out there for a while, longer than chemo and that there could be some validity to them.

To top it off the scan showed no growth.  I know what I feel and I feel like I know my body. I am glad about the results but also a little concerned.

We have decided on an alternative method but I don't feel comfortable sharing it on the blog.  As things progress if it does indeed work I am sure I will be happy to share!!
Thanks for all your support, we are so happy the dr is being supportive as well!  My prayers were answered on that one!

the waiting game

So I had my scan today.  I unfortunately in the past few weeks have started to feel my tumors again.  The ones on my sides that prevented me from being able to sleep in a bed for months are starting to hurt again and I can now feel them and they had shrunk so much that I couldn't feel them.  The worst is that I notice it when holding my kids, having them press against my abdomen is painful and it's starting to be painful enough that I can't pick them up.  This makes me sad for so many reasons.

I will call tomorrow to get results although they are horrible at returning phone calls at my drs office so I have a feeling I will just have to wait until my appointment on monday to find out.  The thing is, I know it must show that there is growth, because I can feel the growth!  I am interested in what the Dr will say though.  I wonder if she will think this is from the long break I had when I went to Arizona, I haven't had a scan since then.  I know it's not from eliminating the drug last time because at that point I could already feel the tumors growing.  I am also curious what her suggestions of treatment will be.  There is one other chemo that is the 3rd line of defense (I have already been on the first line and the one i'm on now is the 2nd line)  The 3rd line of defense has an average of working for about 6 weeks, so that is not very promising.

It has been a rough week full of making decisions and dealing with old pains again from my tumors.  Still researching alternative methods.,

Humph

So I certainly felt better without the irinotican but not great.  After my pump came off I was nauseas for days after.  It wAsnt as bad of nausea but still it is awful bein even a little nauseas.  I am not as optimistic about continuing the treatment now.  I am seriously looking into alternative therapies.  I know that after this chemo stops working the only options are clinical trials and I am about done putting chemicals in my body!  I am praying hard on this decision as I have a scan Thursday and depending on the results the decision might be made for me.  I feel like I can't die without having tried everything I can get my hands on and why not start now.   We all know the chemo will never cure me it is just prolonging my life.  I need to find something that is a cure!

better chemo

So the Nurse Practictioner had no problem eliminating the irinotican.  I am a little nauseas but for once I feel like the antinausea medication is working to help with that so that is awesome.  I am also not in bed and was able to eat breafkast out of bed and haven't gone back since I got up!

I hope to continue to feel good, I feel like if I'm doing ok now it won't get worse.  I had a good friend take me to chemo for the first time, my husband was unable to go because of a work meeting.  We actually had some fun, being able to overhear your chemo neighbor can definitely be interesting!  And watching shows with a good friend is not something I get to do often.  Thanks for taking me Celine!  And thanks to our other neighbor Dawn for watching Celine's daughter so that she could take me!  Good neighbors and good friends are what make everything doable!  And of course family, Bryans mom is out to help since my mom went home for a while, so we couldn't do this without Grandma!

chemo tomorrow

I didn't receive chemo yesterday because I had a parent orientation for my daughter going to kindergarten next year.  Because dana farber is so awful and busy they couldn't get me in until wednesday.  So I will hope to be reporting shortly after tomorrow about how good I feel because I didn't get the irinotican!  Let's pray on that one!

Kayaking for a cause

The Healing Co-op that I go to is having their annual kayaking fundraiser on June 29 at the Kayak Centre 9 Phillips St. Wickford, RI.  . Registration 8:00-8:30, kayaking 9am-11am.   It is $50 to participate and the money goes toward the co-op, a great cause!!  I will be going with some of my family, please come, the more the merrier!

I went last year and it was a beautiful day, great for paddling and a lot of fun.   If you can't make it and want to donate, email me at leahinnewport@hotmail.com as there is a pledge form for me to raise money for the event as well.   Hope to see you there.  You can register online at http://www.thehealingcoop.org/2014kayakforthecoop.html

Just listening to the birds

My husband was on his way out the door the other day to go for a run.  He came back inside and stated that he had forgotten his headphones.  My 5 year old daughter gave him a puzzled look and simply stated, "you don't want to just listen to the birds?"

I feel like ever since my diagnosis I have stopped to smell the flowers and listen to the birds more than I would have, knowing I probably won't be able to do it much longer.  My mom's birthday is today, and birthdays seem to really be a significant time for me in my life now.  I just never know if I'm going to be around for the next one. 

I did hear back from the nurse and she said that it is an option next time to eliminate the one drug we know is causing the problem.  I feel like I get mixed responses from people when they hear this.  On the one hand I might not be suffering as much from chemo in the future, which is great, but on the other hand we aren't sure that it will be as effective in keeping the cancer away.  So as grateful as I am to not be suffering of course there are always the chance of consequences we don't want to deal with.  It's just not fair, and well I guress I need to get used to that.

It seems like every week we're reading about trials and cures that people have found for their cancer.  I always wonder if some day that will be me, and I pray it will.

Once again I want to thank my mom for all her help, Happy Birthday!! and I don't know what we'd do without her!

Chemo reduction

So the dr decreased my dosage by 20% of the one drugs we think is causing the problem (irinotican) This did not help at all.  The patch for motion sickness basically gave me dizziness and blurred vision to the point where it is difficult to walk.

It sounded like she could reduce more next time but also they can eliminate the whole drug.  I want to try eliminating it because I just don't think lowering will do anything.

I have a scan scheduled for June 12.  This will probably be too early to tell if its still effective without the irinotican.

The dr wasn't against doing the trial either.  I'd like to see if we can do without irinotican and still keep the tumors from growing before switching to trial.

More on clinical trial

It was helpful to meet with the clinical trial oncologist today.  It sounds like if I really wanted to and I qualified I could possibly get started on it in 6 weeks or so.  It of course has its own side effects (which are not all known, that's part of the  point of the phase 1 trial is to document side effects).  If they can't get my symptoms under control from chemo this sounds like a good option.  This dr said that since I'm on the full strength chemo, they should reduce the dosage to see if that helps.  I am definitely going to request the reduction on Monday.

The dr is hopeful about the trial but since it has its own side effects and of course we don't know if it will work, it seems to make sense to stick with trying to make the chemo mnageable.  I have my off week where I feel pretty good so I could lose that on the trial and possibly feel crummy a lot of the time.  Although she did mention that nausea and vomiting were not symptoms she expects me to experience on the trial.

So I guess we will see how next week goes and I will be in touch with her to tell her if I want to do it as soon as possible or just keep my name on the List for when my chemo stops working or becomes unmanageable.  Also the longer the trial goes on the higher the dosage of the drugs so it might be better to wait until the dosage is higher to have it be more effective.

Doing much better

I have had a decent week and I am not looking forward to the next.  I have talked back and forth with one of the chemo nurses and there really is only one thing they can offer me to help with nausea that they haven't tried.  It is a motion sickness patch.  My nausea is triggered by movement so this was their one idea.  I don't hold a lot of faith in it and if this doesn't work, aside from reducing the chemo I am not sure what the next plan is.
  I meet with the clinical trial dr tomorrow so maybe there will be some promising news from that visit.  I will let you know!

Never say worst chemo ever

I remember a post a while back I called it the worst chemo ever but now I feel as though I have topped that. I continue to get very sick progressively with each treatment and Monday was no different.  I need to call the dr to discuss my options because I don't feel as though I can go through this again in a week.
  I have an apt with the trial specialist next Friday but not sure where we will be after that.  Please keep prayin as I feel awful and I am very scared about the future and what the drs can do to help me.  We tried a different method of antinausea drugs this last time with no improvement and there really aren't any other options out there.

awesome trip

We arrived home safely and had an awesome time in Tucson.  The weather was perfect, I was outside with the kids every day and we came back to rain and cooler weather!  My mom's friend was gracious enough to offer us her timeshare so the kids slept great having their own room and own beds.  The place also had a pool and Elly was in every day, getting closer and closer to swimming on her own!  We were able to go to the desert museum and see the animals and spend lots of time with family!  Thanks everyone for prayers for safe travel and for me feeling so good the whole time. 
  I get chemo again on Monday and I am not looking forward to it.  I am going to have a discussion with the dr about how to manage my symptoms and try to avoid getting so sick.  Then in a few weeks I have another appointment with the dr doing the clinical trial, to ask more questions and find out more about it.

more balloon photos

The balloon chaser who follows the balloon to pick us up at the landing site took these photos of us in the balloon.  I thought they were so awesome I wanted to share!

Happy Easter everyone!  We are having a nice day here, filled with swimming and eating outside!  Loving the sunshine!

Hot Air Balloon ride

Well it took 2 days to get to Arizona!  Our first flight was so delayed on Tuesday that we would have missed our connection so we all went back home and tried again Wednesday and we made it.  Then got up at 3:30 this morning to get to the meeting place for the balloon ride.  We then took a bus to the launch site and watched them set up the balloon.  Here are some photos from the trip.  My favorite part was seeing a coyote chase after a jack rabbit when we got pretty close to the ground.  The highest we were was 2,500 feet up and the fastest we went was 20 mph.  Very awesome experience and so glad I was able to share it with my hubby and some random stranger who was also on the flight :)

 blowing up balloons

I was a little shocked to hear, after our great landing, which wasn't as bumpy as the pilot had alluded to, that this was his first upright landing in about 4 days!  Usually the basket tips on it's side and everyone is holding on not to get dumped out!!  So glad that wasn't our experience!

 The balloon after we landed in a farm field

 View of mountains from the balloon, and the moon

 other balloon we were following the whole trip, not as pretty as ours huh?

Just thought this was cool to see our shadow on the farm fields before we landed

Guess what I'm not doing today!?

So today would normally be a chemo day for me.  I get nauseas just thinking about it, and hearing the word "chemo", but alas, I am not driving to Boston today, I am packing!  I booked my balloon ride for Thursday, it's bright and early 5am, so you east coasters can think of me and bryan flying at 8am, I can't wait to share photos!

I was able to spend some time yesterday with a friend of mine who is going through a clinical trial for ovarian cancer.  Her trial seems very similar to the one I am interested in and is also done at Mass General.  It is just taking two different kind of drugs in pill form that are designed to stop cancer cell growth.  She seems to be doing well and I won't forget her words that gave me a feeling of relief.  She does have side effects from the drugs that aren't pleasant but she said "it does feel like a break from chemo."  And the good news is her trial shes on seems to be working!

We leave tomorrow and as Elly says, "we are on vacation for 14 days!"  very exciting!  and as Drew says, "we are going in an airplane way way up to see Nina in Arizona!"  I think since my mom was staying with us for so long they are extremely excited to see her.  My dad and his wife and kids and my brother and his girlfriend are also out in Tucson so we will get to see everyone!

I feel like I just finished getting over a cold and got another one.  I guess that's just how it goes, but these colds knock me out, I get so exhausted.  Hopefully I will be feeling better soon and the sun and fresh air will keep me from getting sick again while i'm away.  Here we come sunshine!

Clinical Trial

We had my appointment today with the lead clinical trial GI oncologist at Mass General.  Overall it was really encouraging.  She gave her opinion on the treatment regimen i'm on and said that it is what she would recommend I be on.  Then she had a trial that has started recently that might have an opening soon.  It would not be a type of chemo, it would be taking specific drugs to stop cancer cells from growing.  It is also a trial that is specifically for people who have cancers with KRAS mutations, which I have.  She didn't agree with my current oncologist in regard to waiting until this chemo stops working, she didn't see anything wrong with joining this trial while my chemo is still working if something opens up in a couple of months.

She put my name on the list and I don't want to get too excited but in a few months I could possibly be called to see if I qualify to participate.  There is a screening process that I'd have to pass with a series of tests.  Basically what I got out of this is, I don't necessarily have to be on chemo for the rest of my life, there are other options like this and that is very exciting to me.  Even if it didn't work, there are others out there and it would also mean a break from chemo regardless if it works, and that is very exciting to me!!

on a happier note

I am in the process of booking our hot air balloon ride for our Tucson trip, AND on an even more exciting note, I think the acupuncture that I've been trying is starting to work on my neuropathy!!  I have had 4 acupuncture treatments and haven't had too much success yet but just recently I started to get more feeling in my feet which have been numb on the bottom for just about a year now.  I was told if i didn't notice any improvement by the next treatment that it might not work, so I am very excited!

Feeling much better after an awful week, and I am super excited that I don't have to go back a week from today to get poisoned again!  So excited for my break and to feel good and see my family!

The Green Castle bucket

When I got home monday from boston and getting chemo, I was so nauseas I could barely make it to bed.  Bryan grabbed this bucket from the garage, a green bucket that is used to make sand castles in the summer with the kids.  I brought it upstairs and it is still sitting next to my bed (I can't seem to remember to bring it back in the garage every time I go downstairs).
 
When I was sick monday and was running to the bathroom it upset my daughter.  Daddy explained that my tummy wasn't feeling well and she burst into tears saying, "I know mommy doesn't feel good!"  Then the next day she was asking me why I had a sand castle bucket in my room?  "That doesn't belong there, mom," she said.   No, it doesn't, and so many things in my life right now don't belong where they are.  I don't belong in bed for a week every other week, but thats where I am.  It's so hard to explain these things to a 5 year old.  Bryan met someone at the conference who grew up with both of their parents having cancer, and she thought everyone's parents had cancer, it was just part of her life.  I don't think I want that for Elly, but if it feels normal and it makes things easier than she can believe what she needs to for now. 

I keep staring at that darn green bucket every time I try to rest in my room.  It daunts me, makes me think of being sick and I can't seem to get it out of my head.  This vacation will be such a good break from chemo and life here, we need a change.  There isn't much we can change but we can get out of here for a while and go to arizona and pretend things are normal and be in the sun!

OK time to go put that bucket back where it belongs, put away for to wait for summer!

ugh!

I ended sick to my stomach again last night, beginning to think throwing up on chemo day is not a stomach bug.  I think after being on the regimen for so long, my body is not handling it as well as it used to.  This is very unfortunate because I think since the chemo is working so well we don't have a plan to change it any time soon.

Still not feeling good today, so prayers are welcomed as usual!

3/28 scan results

Overall the scan results are good.  Everything is still getting smaller in the abdomen.  The dr showed us the scan and it is terrifying to see how much disease there was back in September and to compare it to now. Although things are shrinking there are a lot of tumors in the abdomen.  The radiologist noted that the spot on my lungs they have been following increased in size a tiny bit but the dr looked at it and didn't agree.  They are just keeping an eye on it.  The dr wants to do another CEA test after my vacation and if my markers have gone up she wants to do another scan just to get a baseline after my break. Overal good news!  Thanks for the prayers!

conference

The conference was fun, it was good to meet other young people who understand what it's like to have your life taken from you at a young age and thrown into treatment and surgeries.  We were able to connect with one couple who has young children so that was nice.  I would like to go next year, I am curious to see the topics they have for discussion next time.  I went to one on nutrition and one called to share or not to share.  It felt like it ended up turning into a group therapy session which wasn't a bad thing.  I found that a lot of the other young people there had been in remission for years which was good to hear but also hard to hear.   It was interesting to meet everyone and hear their stories, I am glad we went.

I heard about another dr who works with my current oncologist that might be a better fit for me.  I will see what we think of the new one at mass general first and decide if we want to meet another one.  This other dr, the couple we met sees him and he is on a few clinical trials so I was surprised. 

I will try to blog if I can tomorrow at the hospital about the scan results. 

scan and conference

So this Friday I get a CT scan.  I have had 12 treatments on this type of chemo.  Last year my regimen was 12 treatments and we all thought I was in the clear.  I can't believe I've already been through 12 more!  Unfortunately there isn't an end in sight, nothing to celebrate really.  I am anxious about this scan just because i have had so many stomach issues lately.  Unfortunately the chemo can cause that so it's hard to tell what is going on.  I will find out the results of my scan at my apt before my chemo on monday the 31st.  I assume if there is anything new showing up we will have to dicuss where to go from there, I don't see a point in doing the same chemo if we have growth. 

The young cancer conference is also this weekend.  Bryan and I are going and since there are a lot of sessions I want to attend but you can only choose 2 to go to I think we Will split up and that way we can get more info.  I really hope to connect with another young couple going through something similar, if we make one friend I'll be happy :)

I am also working on getting an apt with the top clinical trial GI oncologist at Mass General.  My oncologist that I have seems reluctant to discuss clinical trials with us because my treatment i'm on is working.  Bryan and my thoughts are that we'd like a plan for when this chemo stops working.  It could happen at any time, the average this one works for people is a year and we're half way there.  It is constantly on my mind that at any time I could start heading where I was in september and be in so much pain and realize that it's not working anymore.

Well I hate CT scans because the stuff they make me drink makes me sick every time.  We got a hotel in Boston to stay up there after since the conference is the next morning at the same place.  We have friends watching the kids for the night and I am looking forward to a night out, hopefully I won't be too sick!

Cancer card

I've heard from several people talk about loved ones with cancer excercising the right to use a cancer card.  I kind of like this idea, it allows other people to show their compassion.  Its my understanding the cancer card is something you can use if you aren't feelin well or are being asked to do something that you don't wan to do.  You can pull the cancer card as an excuse to not do something and no one can say or do a thing about it.  Or it can be used to get a special deal.  Sounds like a genious idea to me.  There are countless times that I've felt like due to my illness I should be exempt from normally required activities.   I also believe pulling the cancer card should gain you access or special privileges to things not everyone gets.
  My only experience pulling the cancer card so far is when I was in Arizona last time.   I pulled the cancer card to get a discount on a hotair balloon ride.  Since the ride didn't  happen I need to see if I can pull that off again this next trip.  Just for the record, balloon rides are a couple hundred dollars, so it was well worth the usage.  I was honest and told the woman I had terminal cancer and its been a dream to go on a balloon ride and asked if they had any discounts.  She immediately offered me and my mom the child's price which is about $100 cheaper than the adult price.  This just goes to show that you can't have a cancer card without people that are going to accept the card and have some compassion.

Worst chemo ever

I feel like this week has been the worst in a long time. For one, it's our first chemo without having a grandma living here to help out.  So that immediately makes it more difficult for so many reasons.  Then for the first time ever I got sick to my stomach the day I got chemo.  Since my son ended up sick a few days later we figured out I must have had a stomach bug at the same time as the chemo.  Which makes sense, I have always gotten extremely nauseous but never gotten sick.   I still have very low energy, By this day after chemo I'm usually running on the treadmill and that is not happening today!

Anyway, Please pray for me.  I have some horrible vision problem that happens a few days after chemo.  I have been given medication for it but it isn't working like it used to.  I am just not feeling myself lately and it makes everything harder to deal with. 

Hope everyone else is doing well, the weather has held out a bit for us.  The only thing that's keeping me going is that we planned a family trip in April and I get to skip a chemo treatment for it.  I am super excited about that!  We are going to visit my family in Tucson!  It should be in the 80s and sunny!

awakening

"Everything we do can be done with one intention, to wake up, to ripen our compassion, and we want to ripen our ability to let go, we want to realize our connection with all beings.  Everything in our life has the potential to put us to sleep or wake us up, allowing it to awaken us is up to us."

I feel like this idea of allowing things to awaken us is so applicable to my life.  Instead of just shutting down and going to sleep over what I am dealt with, I want to be awakened and do with it what I can to make a difference.  Someone emailed me yesterday saying that they read some of my postings and that it encouraged them to reach out to a friend in need.  That was the greatest gift to me, to hear that my words were encouraging to someone and that the encouragement allowed that person to touch another's life.  How much better of a gift could there be?!

weather and the 4 noble truths

There are four noble truths according to the buddahs first teaching:
1.  It's part of being human to feel discomfort.  All around is the changing weather and we fail to see that we are like the weather, that we ebb and flow like tides and wax and wane like the moon, therefore we are fluid, not solid and so we suffer. 
2.  Resistance is the fundatmental operating mechanism of what we call ego, that resisting life causes suffering.  The cause of suffering is clinging to our narrow view, ME.  We resist change and flow like the weather, we have the same energy as all living things.  When we resist we make ourselves solid, resisting is whats called ego.
3.  Suffering ceases when we let go of trying to maintain the huge ME at any cost.  When we let go of the thinking in meditation and the story line, we're left just sitting with the quality and the energy of whatever particular "weather" we've been trying to resist.
4.  We can use everything we do to help us realize that we're part of the energy that creates everything.  If we learn to sit still like a mountain in a hurricane, unprotected from the truth and vividness and immediacy of simply being part of life, then we are not this separate being who has to have things turn out our way.  When we stop resisting and let the weather simply flow through us, we can live our lives completely.  It's up to us. 

I liked this chapter because it shows that only we can stop our suffering and it's all in how we view things and how we let it shape us.  We suffer when we focus on ourselves and if we can let go and stop resisting change we can live our lives.  This chapter kind of explains what meditation is and how it can help when you're suffering, it can be so empowering to be able to do this, I wish I were better at it!

warriors

I'm reading a new book and I'd like to share some excerpts from it over the next few postings.  The book is called, Comfortable with uncertainty.  The book talks about what a warrior is and I liked this part:
 A warrior accepts that we can never know what will happen to us next. We can try to control the uncontrollable by looking for security and predictability, always hoping to be comfortable and safe.  But the truth is that we can never avoid uncertainty.  This not-knowing is part of the adventure.  It is also what makes us afraid. 

I have to agree that the not knowing is very scary and makes me afraid.  And I have to say the adventure I have is not one I would have chosen but it is what I was given.  I try every day to learn to accept it and accept that I cannot change it.  I can only change how I chose to handle what I was given.  A lot of people have used the word Grace when describing how I handle my cancer, I kind of like that.  I certainly try to have grace and acceptance and I think that's what warriors need.

living with a secret

Someone told me recently that I could look at my life as though I'm living with a secret.  My chemo so far doesn't make my hair fall out.  I surprisingly do not look as though I'm dying, I look and feel healthy as of now.  I posses the knowledge of my future and those who do not know me, do not.  Walking around the cruise ship and looking at all the happy people on vacation was in a way a daunting experience.  Why do all these people who love buffets and to sit in the sun get to live "forever"?  But I always go back to, who knows what they've been through.  They could have their own diagnosis that they aren't aware of or that they're not visually sharing. 
    One night we were at dinner on the ship and we were sitting right next to a woman who clearly was growing back in her head of hair.  I immediately had this feeling, she has breast cancer.  Sure enough she struck up a conversation with us and it turns out her and her husband were celebrating the end of chemo for her by going on a cruise.  Now I don't ever see me being able to even celebrate that.  I am jealous of my aunts chemo schedule because she can now go every 3 weeks, and I have to go every other week.  How pathetic is that, I'm jealous of a chemo schedule, oh man what a life I now live.
    This woman who was celebrating the end of her chemo was the only person on the boat that we shared my secret with.  She didn't even acknowledge the information with any sort of response what so ever.  I mean, she literally didn't respond, she didn't say anything at all.  I don't know how someone who has been through something so similar as myself can just not even express any sort of understanding, empathic or sympathetic or anything at all.  Telling elicited nothing from this woman.  I know this is how many of you feel.  You don't know what to say or do.  I did a post a while back about this, about how doing something is better than nothing at all.  But then what should that something be?  I don't know that I have the answer to that, and I of all people should be able to give you some hint on that shouldn't I?  I can say that the number one thing that makes me feel heard and understood is compassion, so if you could just show compassion I think that's enough.
    I am not sure what we expected to hear from this woman on the ship, or what we expected her to say that would make us at least feel heard.  I think the fact that she did nothing made me think well she could have at least aknowledged what we said to her.  And I think in general thats what's helpful, is acknowledgement that you understand or at least try to understand what we're going through and again having compassion.
  So as far as secrets go, this is not the one anyone would chose to want to live with, but the word live is the key.  As long as I'm living I will have this secret and that is all I'm trying to do right now is stay alive.

young cancer conference

I got a flyer in the mail from Dana Farber advertising a young cancer conference at the end of March.  It is just a few hours on a Saturday with some interesting looking talks on nutrition and blogging and having cancer as a mom and all the fun stuff that comes with being younger and having cancer.  I am definitely going to go and I'm pretty interested to see what they talk about.  One of the main things was writing and blogging about your experience so I feel I can definitely relate to that one.

I had an increase in a few drugs this past time, non chemo drugs.  We are trying to find a way to make me less miserable the day I get treatment.  I think we had some success but of course all drugs have side effects and I didn't really care for some of the ones I experienced this time that were new.

I keep thinking about the cruise and how blessed we are to be able to have gone.  And how fortunate we were to have my mom watch the kids for us.   My mom went home recently.  I am doing really well and we want to see if we can use friends and family to help with the kids and some how manage without her.  I think it will be a tough adjustment as she was so helpful and supportive but I think it is manageable.  I would love for her to be able to work again and feel like she has a life other than raising her grandchildren.  She is so fabulous at it though!  she is teaching Elly to read and so many other things that I just don't have the energy for most of the time.  I will miss her as she kept me company and was a great help.

Bryan's mom will be coming out to help the next time I get chemo so that will be fun.  The kids miss her and do really well with her.  My brother has also been home but should be coming back soon. 

ok well I will end my rambling, not much to talk about, but feeling really good today, hope you all have a good day!