a new year

The scan wasn't a surprise yesterday, it showed shrinkage of tumors and less fluid.  So as we suspected by how much better I'm doing than before chemo, it is definitely working.  I asked the Dr about taking a vacation with Bryan and what to do if it interferes with treatment and she said we'd do the same we did when I was sick and just postpone it, so now we need to plan our trip!

I try not to read the news but when I do I read these depressing stories of people losing loved ones, not even necessarily to cancer but to car accidents or whatever.  It always puts things in perspective that this is really happening and it happens to others and there is no reason why my situation should be different.  Then I go into the hope survival mode of how I can be the lucky one and that if I can stay alive long enough for the right medicine to come along maybe I can be here to see my children grow up.  It's just hard to believe that I could not be here for that, but something I think about every day.  Every hug or snuggle I get from my kids I cherish and every moment I can spend with Bryan is held in my heart, wishing and hoping there are many more to come.

Christmas was really hard for me, I was in pain and couldn't help but wonder if it would be my last Christmas here.  Let's just hope that everything keeps going positively and that I can try to eat healthier, exercise more and kick this thing, here's to 2014!

chemo monday

Scan was ok, I will get the results on Monday when I get chemo.  I did have good white cell count so chemo is on for Monday.  That's all I got!

scan tomorrow

I have my scan tomorrow.  I am a little anxious because I have been having a kind of new intense pressure/pain near my liver.  I am not sure if anything will show up on the scan but it makes me nervous that this happened while I was on a little break from the chemo. It was so nice to not feel the effects of chemo over christmas but I still have an awful cold.  I will get blood work tomorrow before my scan and I am hoping it shows my white count up so that I am clear for chemo monday otherwise I think they will want to give me the shot that I do not want.  So let's pray on that one.

The project my friend Kim was working on is completed and I have posted a picture below.  What looks like lines all around the edge (if you zoom in) is actually everyones name that submitted it to Kim when she asked for it a while back.  I think it came out awesome and I was excited to hang it on the wall for everyone that comes over to see and search for their name.

early christmas gift

I had been talking about how the Dr had mentioned going on breaks from chemo for special occasions and what better occasion than christmas.  Well that isn't exactly what happened, but close enough!  I went Thursday to get my treatment and my white cell counts weren't high enough.  They decided to delay treatment because of that and decided that since next week is Christmas, that we could delay it another week.  I am fighting another cold and they think that is why my count is down, so let's hope that's it and I don't need to get the nasty shot to boost my cell count next time!

I made it home safely and I am very happy to be with my kids and husband again, it was too long to be gone from them!

I need to be extra careful now about germs and being around sick people since my counts are low, so that is kind of a bummer, but good to know!

Band Together for Leah event

(another post form Leah's friend, Kim)

If you are reading Leah's blog, you have already helped by keeping her in your thoughts and prayers, giving her support in many ways, or just by being a friend. These are priceless ways of helping and we all know how much Leah appreciates them.

Leah's coworkers at SEA Corp wanted to help by having a fundraiser and the concept has gained considerable momentum as more and more people have become involved and lent their input. There are spreadsheets and action items and websites - the organization and dedication of these wonderful people amazes me! And we were able to persuade Leah to let us do this for her. So many people have reached out wanting to do more for Leah and her family, and this is one way of allowing them to do so (and have a fun time doing it!).

Here is the event being planned in Leah's honor.

Saturday, January 18th from 6:00pm - 10:30pm
at The Elk's (141 Pelham St, Newport, RI)

For tickets, please call Kevin at 401-324-4117

Tickets are limited due to venue capacity

Feel free to come and leave anytime during the event. If you participate in the raffle, you don't have to stay till the drawing to see if you've won since there will be space to fill out your contact info on the ticket.

All proceeds will go directly to Leah Ploutz and her family.

The Facebook event page ("Band Together for Leah"): https://www.facebook.com/events/538511059567464/

If you live locally and wish to volunteer your time or you cooking for the event, you can sign up here:

If you have any questions, you can email me, Kim, at kmccarthy1040@gmail.com and I'll try to put you in touch with the right person.

aww shucks I'm stuck

My brother and I checked in and were waiting at the gate in Tucson for our flight when they kept calling up people traveling to cities all near Providence from our connection, Chicago.  They were telling them their flight from Chicago to where they were going was cancelled due to snow storms back East.  We finally went up to ask, "what about Providence?"  "Oh yeah" they said, "there too."  No more flights there until Tuesday!  Well chemo Monday will have to wait I guess.  In the meantime I'm enjoying more time with friends and family and missing my husband and kids like crazy, kind of what my son would call a "Happy/sad" kind of thing. 

Last week I met up with some friends I used to play soccer with in middle school and Highschool. We met for lunch and caught up and of course took a group photo!

Saw an awesome view of the moon last night over the mountains, and only having my phone to take pictures, this is all I have to show for it.

And of course it's gorgeous and sunny here so I am soaking up some extra rays!

There is another storm back home tomorrow, so let's just pray we make it this time!

too windy

My mom and I got up bright and early at 5am and then I got a text from the balloon company at 5:30 that it was too windy to do the balloon ride.  Boohoo!  I hear they have them back home and although it is beautiful out here it would be awesome to see Aquidneck Island from a balloon!  Anyway, no pictures to send today with no balloon ride :(

a bench will do

I went on a hike with my mom and we chose a different trail than last year.  I could not find a good rock to lay on..we even traveled over the river....

 through the desert... and saw a road runner!!  beep beep!

 passing tons of saguaro....

 and past lots of benches with good views...

 and one right in the sun..

It was finally HOT, so no need to lay down to soak in the rays, but I did anyway for a rest.  

sitting by the fire

It seems as though it is finally going to warm up a little toward the end of the week, but it's been in the 30s at night here and that's cold!  I went to a restaurant where you can sit outdoors and since it's been chilly they warm you up as you can see in the photo, kinda cool.

I did get reservations for me and my mom to take a balloon ride on Thursday morning, bright and early, they like to go before sunrise so that will be kinda cool to see.  My friend is letting me borrow her camera so I can take better pictures.

It has been relaxing out here, I went to a vegan restaurant last night that is right next door to an Italian restaurant.  They have an arrangement where you can go next door and order the vegan food and have them serve it to you at the Italian place so you can eat with people who are ordering the Italian food.  I thought that was pretty cool!  And to fit in at the Italian place I ordered a vegan lasagna which was really good!

The sun doesn't seem to be out today, but I when it is I will have to find a rock!  I heard it is snowing back home, so I won't complain!

Tis the season

My mom and I arrived safely in Tucson last night, late, way too late.  I am adjusting to the time change and I am still tired from the trip.  Got to go to Trader Joe's today.  I say "got to" because the one at home is not anywhere near my house and I love going to that store and getting fun organic vegan stuff.  Anyway, just wanted to check in and let everyone know I'm alive and well and I hope to have some fun pictures for everyone this week.  Here is one I took down the street from my mom's house, thought this was so cute and seasonal!

I have had a life long dream of going on a hot air balloon ride, they have them here in the winter and I am looking into it but not sure if I can make it happen, that would be some awesome photos, too bad I forgot my camera!  At least I have my Iphone.

Unfortunately it is supposed to be in the 50s here this week, and rain tomorrow, but I am determined to find some sunshine and a warm rock!

Pink Tip #4

GPS yourself, this is what the book calls it.  The book says, "Meet yourself where you are in this journey.  The cancer trip is an up and down road--some days you're strong and ready, other days you're weak and want to give up.  Find out where you are on any given day emotionally and go from there."

I think back on how sick I was when I started chemo again.  I feel so much better now, and can't believe what I went through.  If I knew the chemo was going to work and how much better I'd feel I wouldn't have been so torn about doing it, but alas, there is no crystal ball is there?

 Well speaking of GPS, I am heading to Tucson next week on Saturday, for a week.  I can NOT wait to soak up some sun.  My mother in law is coming out to help with the kids and just my mom and I are going.  Then I get to fly back with my brother!  How lucky am I??  I feel like i'm finally getting over this awful cold and hope I can be in decent health to go for long walks in the sun and just be outside, maybe go find my rock to lay on in the desert!

I have chemo monday and I am NOT looking forward to it.  I just feel so sick by the end of the treatment that I can't wait to just get home and go to bed.  I keep making appointments to get drained and then cancel them because I just don't feel like there is enough there. I think there is a little bit but not enough to go through the awful procedure. The further I get away from it the more I don't ever want to do it again.  It has been almost 6 weeks I think, and I am so grateful I don't have to go twice a week like I was doing, that was awful! 

Thanksgiving

I don't think I'll be eating Turkey this year for the first time ever at Thanksgiving.  Of course every holiday is a little different for me from now on anyway.  How much is a little bit of turkey going to matter.

I was trying to find a great thankful quote to put up for today but I couldn't find anything that I thought was good enough.  I guess the bottomline is that we all have something to be thankful for.  The more we say thanks the less we are complaining and being ungrateful.  So let's all find a few things to be thankful for today!

I am thankful that the chemo seems to be working!  I am grateful that I have heat and a home especially when it is so cold and rainy!  I am thankful for my family and friends that have been such a great support to me!  I am thankful for my children who make me smile every day. 

Pink Tip #3

Let It Go- Much of the cancer journey is out of my control.  The book says, Nobody plans to have cancer.  I like that, I have always felt it is necessary to Let go and Let God.  This also ties in with the serenity prayer. 

"It is not the strongest of the species that survive, nor the most intelligent, but the one most responsive to change." Charles Darwin

We definitely have to adapt and go with the flow, othwerwise we're going upstream against the current and it just makes everything more difficult and challenging.  Here is another quote I like from the book:

When you're finished changing, you're finished." Benjamin Franklin

pink tip #2

Pink Tip #2
It is impossible to go over or under a cancer diagnosis you have to go through it.  I think I wrote the quote a while back, "the only way out is through".  I feel like this is another way of saying that.  And taking one day at a time is a great way of doing this, that's what I have to do.

"Sometimes courage does not roar.  Sometimes it is the quiet voice at the end of the day saying I will try again tomorrow."  Maryanne Radmacher

pink tips

My cousin Rachael gave me this book that her friend gave to her to give to me.. you follow that?  Anyway, cool thing is the author signed it and wrote a note personally to me!   The book is called Pink Tips and is tips for someone going through breast cancer.  Although I do not have that type of cancer a lot of the tips are for someone going through cancer in general and I found them really insightful.  Also there are some amazing quotes she has in there too.  I want to share some of this with you over the next few days posting parts of this book because it was that good. 

The first part I liked was the section about "Just showing up"  It basically says you don't have to have all the answers for your friend going through cancer, just show up for them and help them fight it.  I have had so many friends and family do this for me and it is true, just being there, whether you know what to say or not, and let's face it, no one knows what to say, just show up and you don't have to say anything at all!

 My aunt who has ovarian cancer that I am very close with is going to have to go back into treatment.  I of all people don't even know what to say to that.  It just sucks, what else is there to say.  But I can give her a huge hug and tell her I'm here.  So that's what I do. 

"Success is not in getting a winning hand but playing a bad hand well."  Robert Louis Stevenson 

stories

I have had a few people around my age tell me recently that they have had colonoscopies in the past year.  I was pretty surprised, but so glad to hear that my story had prompted them to take action and make sure they didn't have anything like cancer going on with their bodies.  I am so taken aback by stories like these where I feel like I made a difference in someones life without really even doing anything!

And I am so glad to hear that people are being proactive and learning from my mistakes, that's all that I could ask for.  Thankfully no one ended up in my situation but that's the point right to be PRO-active before anything turns into cancer!

I have had a cold for over 2 weeks and it just makes everything a little more difficult. It seems so petty to complain about a cold but whatever, I am on chemo and everything is pretty crappy.  I am sometimes sleeping in a bed now, when I can tolerate the pain on my side.  One side is tolerable, the other is not.

I did not get drained when I had my chemo this week.  I missed my apt because everything took so long but there really isn't anything there to drain.  I am also not sad to have missed out on that experience!  I hope I never have to do it again but there might be a tiny bit there that will never go away without doing it, we will see.  It's so hard to tell.

A very cloudy dreary day here in RI, I hope there is sunshine where you are!

Save the Date!

This is Leah’s friend Kim again.

I’ve had the wonderful privilege of working with Leah at SEA Corp for several years.  Many of our coworkers at SEA Corp have enlisted the help of several of her friends and family to organize an event in support of Leah called Band Together for Leah.

It will take place at the Elk’s in Newport  on January 18^th from 6-10:30pm. There will be live music (Bow to Your Sensei!, HAZMAT, and The Merge), raffles, silent auctions, cash bar, food, and good times!

The details aren’t finalized yet, but we’re looking into pre-selling tickets to prevent reaching over capacity at the venue. We’ll make another post when things are finalized, and in the meantime you can check out the Facebook page.

Serenity Prayer

Does everyone know the Serenity Prayer?  I have found myself saying it lately and I really like it, it is very soothing to me.  For those that don't know it:

 "God grant me the serenity to accept the things I cannot change.  The courage to change the things I can.  And the wisdom to know the difference."

I looked up the definition of serenity:

se•ren•i•ty (səˈrɛn ɪ ti)

n.

the state or quality of being serene; tranquillity

 

Aww serene and tranquil, doesn't that sound nice?  I just find this prayer so fitting to my situation and I'm sure anyone can probably apply it to their life.  There are a lot of things I have to accept that I cannot change in my life.  There are definitely things I do have control of, and I try to take the courage to change these for the positive like my attitude and outlook.  And it is sometimes difficult to distinguish what I can control and change.  I like the idea of asking God for help in this area and just wanted to share my thoughts with all of you :)

Snow

I haven't posted in a while.  I feel like every day brings a new challenge or ailment and it is never ending.  I have been getting out a little more the past few days which is nice.  I feel accomplished if i can make plans and follow through regardless of how I'm feeling.  Today it is snowing and it makes me a little anxious about the winter.  My neuropathy has gotten significantly worse and the cold does not help.   Brrrrr

Nausea

Nausea seems to be my new friend.  I haven't had a great past few days but I did get to sit in the sun yesterday.  I have, I believe, mastered flushing and removing my own pump which is a relief.  I got scared last time and had to call Bryan home.  This time I waited for him to be around and was able to do it.  I got a crash course from the nurse last time on a pretend port.  It's pretty easy once you know what you're doing.  It was more the removal than the flushing that scared me.

The Dr confirmed that if the ascites (fluid) has remained at bay that the chemo is working!  Also she said she thought the tumors were smaller.  She mentioned something about taking a break period at some point from chemo so that was nice to hear.  I'm sure it's way down the road.  Also my next scan will be Dec 9.

sometimes I like to curl up in a ball

My kids have this book called, Sometimes I like go curl up in a ball, by Vicki Churchill and Charles Fuge. I have been thinking about this book for months.  The beginning and ending are my favorite.
   " Sometimes I like to curl up in a ball so no one can see me because I'm so small.  But when the day ends and the sun starts to fall, then I do what I do best of all,I find somewhere soft, somewhere cozy and small and that's where I like to curl up in a ball."
I don't know if it is the comfort of the fetal position or the feeling of being warm and cozy but I have been very sad that I cannot curl up in a ball.  Because of the size and location of my tumors I can't curl up or lay on my sides.  So this is one of my goals, to be able to curl up in a ball at some point, in the sun!

I am on my way to chemo in my nice new van my dad generously bought us.  Had a good day yesterday.  Still minimal fluid build up!  I do have a cold so let's hope that doesn't turn into
anything else.  Enjoy the sun for me while I am stuck inside all day!

Taking names- part 2

A big THANK YOU to everyone who submitted their names to help with a project I'm working on (see post from October 2nd http://leahstatus.blogspot.com/2013/10/taking-names.html).

 I was extremely touched by every single email that either contained a name or in some cases a story of how they knew Leah or their positive wishes for her and her family (this was not necessary or expected, just something I enjoyed reading and of course I don't think anyone cares less if they didn't share a story). As a friend, I am sooo happy she has a wonderful group of people rooting for her and I am so glad you all know what a special person she is.

There were people who hadn't met Leah but followed her story because they knew a family member or friend and their hearts went out to her, and that is exactly what I was looking for and wish to include.

There is still time if you want your name involved but haven't emailed me yet.
I was hoping to have it done by now and be able to post a picture on the blog (the names will not be readable in the picture for privacy), but I am so sorry I have been very busy. And I don't think I allowed for enough time for people to email anyway, so I'll extend the deadline a little longer.

Please stay tuned for the finished product.

Thanks!!
Leah's friend, Kim

welcome to my head

So when I do the meditation, this is where I am.  This is a place about 15 mins from my house where I grew up swimming.  And it is even more amazing in person.  This is the exact spot I pretend I am on when I let my mind wander and escape from my cancer.  The rocks soak up the sun and heat me from the back while the sun heats me up on top!

 And these are some of my fam that came to enjoy the scenery on this freezing cold day. 

I still don't have any fluid build up that I can tell anyway.  I am dissapointed that I haven't been feeling very good in my tummy despite this.  I thought the cramping and discomfort all along was the fluid and now i'm still experiencing these symptoms so I'm not sure if it's the chemo or what, but I haven't felt great the past few days.  I also am not excited about the cold, I am thinking a winter Arizona trip will be in order at some point!

Something wonderful is happening

My mom bought me this mediation CD.  I am not normally that accepting of trying meditation but I tried it and loved it.  It is a meditation specifically for someone with cancer going through chemo.  At one point during the meditation the woman mentions of something wonderful taking place.  This phrase is very emotional for me as I feel as if something wonderful has finally happened to me.

 I was drained on Monday and I haven't developed much fluid.  Last time I was drained, this many days later I had a significant amount of fluid and would be uncomfortable by now.  I slept on my side for a little bit last night and it wasn't painful! I also had a wonderful massage today at the healing co op and was able to lay on my stomach to get my back massaged, I can't remember the last time I was able to lay on my stomach!   And the best part of all, I was able to hold my son, I haven't been able to pick him up and hold him in over a month!!  I feel as though these are all signs that the chemo is working!!  Something wonderful is happening!

So much sun!

This fall has been unbelievable, there is just so much sun!  I found myself outside today every chance I got.  I followed the sun as it inched off our front patio, like a cat, curled up letting it soak into my back.  The ultimate heating pad!  I am now sitting in a meditative position on my front lawn with the sun striking my face.  Feels amazing!

I have been struggling with my nutrition.  I'm the girl who claimed she was going to juice, juice and more juice!  I am nauseas most of the time which makes eating in general difficult!  I haven't been very good about eating veggies lately, shhh don't tell my brother.  He went home for a few weeks to take care of some things but plans to come back in a week for a longer stay.  I need his influence!  Did you know he tells me how and why each vegetable is good for me when I eat them, how encouraging is that!  I feel like my 4 year old!

I have my second round of chemo tomorrow, so I need prayers for getting through the day.  I have plans to get drained before.  The drainage is proving to be more nerve racking each time and I had a bad experience last time when I switched to newport hospital which is closer to home.  So I need prayers for my anxiety.

God bless!

walk a thon

A former employee of mine is organizing the below, I am going to try to make it but as I said in my last post I can't really get out much so if I can make a quick appearance I will:


WALK-A-THON
Portsmouth High School Track
October 19, 2013
1-4 PM
SPONSORED BY PORTSMOUTH HIGH SCHOOL CHEERLEADING

Making strides against cancer in the month of October is the mission of RIIL and schools across the nation. We all try to wear some form of pink at games and bring awareness to this disease. This year as in past years Portsmouth Cheerleading is selling Tee Shirts for the Healing Co-op in the name of Leah Ploutz and all Portsmouth Residents. We will be selling them at the Football games during the month of October and at our Walk-A-Thon on Saturday 19 October 2013. We will release memorial balloons for your family member or friend that has been stricken with this disease. There will be music, face painting, tumble track for the kids and more fun…….

Please Join Us At:
WHERE: PORTSMOUTH HIGH SCHOOL TRACK
WHEN: 19 OCTOBER 2013
TIME: 1-4
COST: $10 REGISTRATION FEE

TEE SHIRTS, REFRESHMENTS AND MEMORIAL Balloons WILL BE SOLD AT THE EVENT AND ALL PROCEEDS FROM THESE ITEMS WILL GO TO THE HEALING CO OP. Please forward all responses to Dvalente@seacorp.com or D. Valente, 117 Lewis Street, Tiverton, RI 02878 Checks made payable to Portsmouth Cheerleading note on remitter that it is for Healing Co op.

terminally ill

What is it like to live every day knowing that you have a disease that at this point in time, is likely going to take over your body and take your life?  I am not sure yet.  Last year when I was diagnosed I was sure that I could beat this and that by now I would have had my life back, but such is not the case.  I always go through the what ifs but I don't know that I'd be in any different place than I am now, and so therefore it is a moot point and shouldn't have my time and energy wasted on it. 

I do believe in miracles, I see them every day.  I get letters in the mail with people whose lives I have effected in the hugest way because of what I'm going through and how I'm handling it, those are all little miracles.  I believe in acceptance and hope and those are a tough balance.

I have two little miracles say "good morning mommy" every day and if those amongst the others are the only miracles I'm meant to have in this life then so be it.  I  said to my pastor the other day that perhaps God created cancer as a way to bring us all home.  When you are suffering like I am, you can't help but imagine that there has to be more to our lives than just our time here on Earth.  I am not saying I'm giving up, like I said I have hope but I also have acceptance. 

I continue to get heart felt letters, prayers, cards, emails, texts and it's all what keeps me going.  I haven't really been able to talk on the phone much, a little too emotional, but these other means of communication are very therapeutic for me and I greatly appreciate them all.  I apologize I am not being very good about responding but I am tired, and sick and don't have much energy.

I did have a paracentisis Friday (drainage of fluid) and was able to have a decent day yesterday.  I spent a lot of time out in the sun, although I have to be laying down most of the time beause of my nausea.  I have been able to go on very small walks with breaks in the middle but I'm trying to get out when I can, although I really don't feel up for much.

Need a laugh? I did!

So I found myself texting my dear friend on the way home from chemo, the one who let us borrow her sweet ride.  I was telling her about chemo today and it occured to me you all might like this story.

I ended up taking a plethora of mind altering  drugs, only ones I know names of are Benadryl and morphine.  Anyway, at the end the very kind Irish looking nurse developed an Irish accent.  (Now you see why I told you I was on drugs).  But it was so real I was getting upset that no one else heard it.  I embarrassed the sweet thing and I am outraged that no one would admit they could hear it.  I debated googling signs to look for of a leprechaun.  I realized if I ever wanted to go home I'd better not push it for fear of being admitted for nothing to do with cancer!

Well before i made the nurse think im crazy i must have gotten her to like me because she got me another private room with bathroom and bed, score!  only thing is the pump i take home is a lot bigger, noisier and heavier than old one and i have detach it myself instead of havig nurse come.  that's all I've got, if I have the energy I will check in tmrw!

Chemo today

I am currently getting chemo.  Few set backs with reaction to something but nothing major.  Confirmed another tumor on my rib today.  A place that has always bothered me and drs had said was normal.  The scan shows it as soft tissue tumor.  No wonder I can't sleep at night I'm covered in them!  My sweet, sweet neighbor has loaned us her awesome van for a few days to make all the trips easier to Boston.  I also had another 2.4 liters drained yesterday.

I am surprisingly feeling ok today, which I think is related to beig drained yesterday, have it scheduled again for Friday.

No chemo today

I was up last night all night, really sick.  We have been worried about a tumor pushing on my intestines and creating a blockage.  The dr was worried as well.  She ordered an X-ray to see if anything was blocked and the X-ray did not show a blockage.  By the time this got ordered and the radiologist viewed it, it was too late to do chemo today.  The next assigned day for chemo is Wednesday.

"words are not what I want to send"

I just received a card from one of my cousins who doesn't live close enough to just stop by to see me and give me a hug.  The card itself was very sweet, but She wrote on the card "there were no cards that said what I wanted, but I think it is because words are not what I want to send.  I want to send all the love and positive energy I can to help you continue to stay strong.  You are amazing, courageous, strong and resilient.  I pray you can keep your head high and your spirit light." Lindsey Pettus

Thank you Lindsey, I keep crying every time I read your card.  I know that wasn't your intention but I feel the love!  I think the reason this struck my heart so much is because that is what everyone says, "I don't know what to say" and I totally understand that, I don't know what to say either.  Lindsey brings up the point that words aren't enough, it's everything else, the love and the positive energy that matters.

My brother has also been amazing, he doesn't have children of his own but he is amazing with my children.  Ben could get paid to get kids to eat their vegetables at dinner time, he really is impressive, it is probably cause he's a vegan :) or wait, is it cause he's my brother?  Either way, I don't want him to leave.    

I have been pretty miserable lately, I am nauseous, my stomach hurts when I eat, it hurts when I don't, and juicing is almost impossible because it just wants to come back up.  I change my mind daily of whether or not I'm going through with chemo.  I am too sick to eat well enough to feel I am treating the cancer with vegetables so I decide to do chemo.  Then I think no I will get better, I can do this without chemo, and yet I don't feel better.  I have lost 10 lbs and that is with continuing to retain fluid, so that is not good.

Anyway, enough of that, this week in RI has been absolutely gorgeous and I have enjoyed sitting outside and going for walks when I feel I can, love that sunshine!

Taking names

Hi Everyone,

This is Leah's friend Kim. I was hoping you'd help me with a little project I'm working on for Leah. I won't get too specific because I don't want to spoil the surprise for Leah, but will make sure you know about it when it's done.

I’d like to put the names of everyone rooting for her on this item so she can be reminded whenever she sees it. It means a lot to her to know there are so many people out there supporting her.

If you would like to be included, please email your name to kmccarthy1040@gmail.com (or if you know me and would prefer to contact me another way, that works too). Please include the names of any family/friends who would like to participate, but please avoid sending duplicate emails. This was the best way I knew how to reach everyone Leah knows but I know some people may not be blog checkers, so please spread the word! I'd like to have everyone's names by Saturday October 12th.

It can be: first and last names, just first names, “___ Family”, and/or groups, etc. Whatever you’re comfortable with. The more the better, but I’d like to focus on names that hold significance and don’t want this to go viral to people who may not be familiar with Leah’s story.

If for some reason, someone would like to remain anonymous but still show their support, the best thing I can think of is to comment saying "anonymous" or whatever you'd like to be listed as.

I wont save anyone's email addresses and you wont be signed up for spam or anything, I promise. If you'd rather not email you can always post as a comment, but I'd like to keep the majority of people "hidden" from Leah till she sees it.

You are all awesome! Thanks!!

Dear God, just Wow!

When I was little I had this puzzle that was one of those plastic ones that you slide the pieces  around and make them fit into a picture, the ones that are harder than they look.  Mine was of a little girl and there was text that said, "Dear God, just Wow!"   That's how I felt today when I looked at the blog stats.  980 page views today.  I know there are a lot of trigger happy page refreshers and it counts all of that but that means that at least 980 times today, and the days not over, someone was thinking of me, ME.  Dear God just wow!  

So my fellow followers, my friends, my family, the friends and family of friends and family, thank you.  I have been flooded with emails, texts, and comments and feel so surrounded by love and that is what I need.

I don't know how to explain God's puzzle, this is harder than the little plasticy slider one for sure, but I feel as though if a miracle were to happen, he has everyone's attention.  Whether it be the diet or prayer I am ready. 

Dr said there's a 50% chance of the chemo working.  I don't like those odds.  I need to post at a later time some survivor stories of people shrinking tumors with diet, an if you have any please share.  

Drained another 2 liters today, what a relief.  The fluid slows my bowels and appetite and makes it hard to do much of anything.  

So please know I'm a little more comfortable for the moment and that's all I can do is go moment to moment.

Thank you all again, you are all amazing!

Not a hernia

I really don't even know how to blog this.   I officially fired my providence oncologist.  I am now getting treatment at Dana farber.

Dr Chan, who I just met with for the second time actually viewed my scan unlike the providence dr.  There is a mass on my uterus, as well as numerous nodules all over my peritoneum(abdominal lining).  That hernia that has been bothering me, that's a tumor.  All my incisional sites that have big nodules are all tumors that I can literally see and feel poking out of my stomach.  I have been told by numerous drs that it was just scar tissue but this oncologist confirmed with actually examining me and comparing to scans that the tumors formed on the scar tissue.

Once the cancer has metastasized, which is what has now happened to mine, meaning it has spread to other parts of the body from its original origin, you will never be cured.  This dr suggested the same chemo regimen as my providence dr.  She said that we can try to control the disease with chemo and when it doesn't work anymore we will try another chemo.  She said that without chemo from diagnosis she would give someone 1 year, 2 years with chemo.  My cancer is extremely aggressive.  I wanted to try to treat it with a new diet but Since I am in so much pain and I already used up that 1 year I  feel my only option is to do treatment.

I have no hope for drugs curing me but doing a drastic diet change that I have already started, I believe is my only hope.  I am talking massive amounts of juicing and raw veggies.

I am scheduled to start receiving chemo a week from today up in Boston.

Pray for me, pray that I can keep my positive attitude.

I'm blowing up

So I would say I'm at least halfway to being as full of fluid as I was on Wednesday.  Back to sleeping in the recliner and not feeling good.  Very dissapointed.  I have been surrounded by family and that is a blessing.  My brother flies in tonight and my mom is here.

I am anxiously awaiting the apt Monday in Boston.  I have an order in to get drained again, just not sure when to do it.

Just pray!

relief!

I had the tapping done this morning, it was very interesting, not too painful and I might have to do it again and I would, I feel so much better.  They drained 2.3 liters of fluid.  For those that need a better visual, I weighed 5 pounds less after!  And for an even better visual here is a before and after picture.  The marker on my belly is where they marked to remove the fluid, and yes you can simply just cover with a bandaid after!

I still have some extra belly, I think the skin just needs to go back to normal.  I do have some tightening in my chest that I am hoping goes away, I had a lot of shifting of everything inside after, clearly everything was displaced!

My mom arrives this evening, so there will be another relief!  I have a wedding this weekend that I was a little sad about attending because I looked pregnant in every dress I tried on, now I don't have that to worry about so that is nice.  I don't know how long it will take for the fluid to reappear but at least now I know the symptoms and can get it drained before it is too uncomfortable.

I am very resistent to doing more chemo.  The chemo they already gave me clearly didn't even put me in remish at all.  This other chemo is only a little different and it seems like a big leap to be taking and suffering for on the off chance it will work.  I learned a lot of natural ways to heal from cancer at the conference and I am praying about whether to take that route, please pray for me to be guided in my decisions!  Hopefully Monday will provide some answers.

here we go again, first opinion

Not really thrilled with my oncologist right now.  There were so many contradictions in what he said and I am just feeling very angry today.  anyway, after not even asking how i'm feeling or even suggesting the drainage to see if it would help me feel better, he basically just said the only option is to do the other kind of chemo they suggested before, for 6 months.  We asked about the drainage and we were able to schedule the drainage for tomorrow.  He acted as if he was totally expecting this to happen, said he was not surprised. 

They wouldn't suggest surgery until after doing chemo to shrink everything that is in there right now. 

I am seeing the Boston oncologist that I liked last time on Monday next week.  I am just holding onto that right now knowing I don't have to make any decisions until I talk to her.

Drainage or Tapping as they call it is scheduled for tomorrow morning so hopefully i will feel relieved after that and the mass near my uterus won't be causing me trouble after the drainage is done or the hernia!

seeing oncologist today

I was finally able to get in to see the oncologist I see in providence today, at 2.  I am in so much pain, it just seems like it gets worse every day and sleeping is the worst, there is no comfortable position except sitting up.  I want to get in to see my Boston Dr but haven't been able to get anything scheduled yet.

It is just terrifying that all this growth happened in a matter of 2 months or actually less because I have had symptoms for weeks.  This is not good at all and I have no idea what the next step is.  I have heard they can drain the fluid, which supposedly is what is causing most of the pain, so we will see.  all the symptoms I had back when I asked for the colonoscopy are signs this was going on and that is so scary!!

Latest CT scan not good

I got a call from my primary DR this morning.  She told me some confusing info and then my aunt was able to run down to the hospital and actually obtain my radiologist report.  The report basically says that I have a mass near my pelvis and multiple nodules in my subdiaphragmatic region as well as fluid in my abdomen.  Originally the nurse said that i had spots in my lungs but according to this it is below my lung so we are all kind of confused.  I am currently trying to get an apt with my oncologist.

I have felt sick all weekend, very nauseas and just not feeling good, I guess we know why. Please pray!

Work and my latest problems

Thankfully work is not on my list of problems!  I have been enjoying my time there and it is not as hard to remember everything and get back in the groove as I had feared.

 I am getting a CT tomorrow that will hopefully show the hernia.  I have a distended stomach and have had one for a while so they want to do a scan to see if I have fluid in there or anything else causing it and the tech said the scan should pick up on the hernia.

Healing Strong Conference

I have been so busy since I got back, catching up from being gone all weekend and also preparing to go back to work tomorrow!  I also have had a hard time formulating a blog entry in my head that gives a good synopsis of the weekend.

The conference (which I will now call a conference and not a retreat) was exhausting, overwhelming, emotional, fun and interesting.  There was a ton of information that was non stop and it was a lot to take in and digest.  I texted my mom at the airport on the way home and told her how tired I was and her response was, oh I thought you would feel rested, hence we are not calling this a retreat!

There was a lot of information about diet and how to prevent cancer from coming back.  There were patient panelists that had refused chemo and shrunk tumors with diet change I think that is so empowering and inspiring. It is a whole life change to follow the protocol they are calling out and I think I could do it.  The problem is that I have no active disease, so I would never know if my cancer  was just not coming back on it's own or if it were the diet.  My tumor markers on my blood work never elevate so it can't be shown there either. 

I think the diet I'm on is a great direction to be going in and I need to be better about a few things.  It was definitely worth attending and it was a great way to network.  I met several women around my age with cancer and I hope we can stay in touch.  One of them actually had colon cancer so that was really cool.  We ended up with a little group of younger people and that was really special for me as I really don't know many younger people with cancer.

I start work tomorrow, it is only for 4 hours so it will be good to ease into things.  I feel like I have been home with my kids for so long (A year today actually that I got diagnosed).  I will miss them and I need to concentrate hard not to say "I need to use the potty" at work and to remember I can't give people time outs when I don't like how they're acting :)  Seriously though, I am excited to get back to work and feel a little more normalcy in my life and hopefully get back into the swing of things smoothly.

I did decide that I want my port out. I have a scan Oct 7 and a Dr's Apt Oct 11th to go over the scan.  I hope to be able to schedule the port removal after that.  It feels like it will be one last step to put this all behind me to get that thing out of me! 

Off to the healing retreat!

I forget if I mentioned that my aunt and I are using first class tickets to fly to the retreat.   I won them through my work last Christmas.  I have never flown first class and I was excited for that aspect of the trip amongst everything else.  We just got onboard and there were little water bottles awaiting us at our seats!  And apparently they serve lunch!  I feel so spoiled!   Off to Atlanta!  I will try to blog if I have time but judging by the conference schedule there won't be much down time.

Drs orders

So after 3 days of trying to get a hold of my Dr I finally got a call back from the nurse.  He still wants me to do a PET scan.  Let me remind you all that PET scans make the patient highly radioactive, so much so that I can't be around my kids for the rest of the day.  Therefore, I will not be getting a CT scan as well, I will wait until another 3 months or until the "hernia" pain is worse.  It really hasn't bothered me since I saw the Dr, weird but convenient since I have this problem with the scans.

I do have to say, every radiology technician I have met is so wonderful and sweet, I swear they are so well suited for their jobs, it makes it so less nerve racking to get scans done.  When I was at the imaging place this week they read something to me at the bottom of the paper that said the patient had a history of colon cancer.  At first this really bothered me, I thought, History?!?  It was less than a year ago, I don't feel as though it's history, although it will be good when I do feel that way if we can keep it away long enough.  But then I mentioned it to my aunt and she said that it is better than the alternative of having it say "recurring" so I guess she has a point, let's call it history. 

On that note, I am still a little uncertain of how to address the situation if it comes up when I meet new people.  I have a hard time attending gatherings where everyone there has no idea what I have going on and therefore doesn't understand why I'm still exhuasted among other ailments that I now have to deal with.  I have a way of bringing it up that makes it sound so uninvasive and casual as if it didn't completely run my life for a year.  I don't want to come across as if I don't take it seriously, cause we all know there is no way not to, but I also don't want to be a complainer and just dump my cancer news on someone.   And I know everyone must have their own personal things they have been through that have shaped them so I know I'm not alone, but Anyway, I don't mind at all, actually I prefer, if you share my story with people so that if they do meet me some day they know a little bit about my "history". 

No MRI

Apparently the radiologist changed the order of an MRI to a CT scan because it would better show possible hernia and my surgeon approved it but they forgot to call me.  So I go to get MRI and they wanted to do a CT but I'm having a PET CT in a month so I said no I dont want more radiation.  I have a call in to oncologist to find out why I'm even getting a PET instead of a CT.  RI hospital says that the PET can not give the cut they need to see possible hernia but CT can.  Very annoyed, awaiting call back.

MRI to check for hernia

I have my MRI today at 3:15 to check for the hernia.  It hasn't been bothering me nearly as much since I went to the Dr about it, of course.  So I'm really curious to see what the scan shows, I will let you know!

Peace, hope, comfort

I received one of many cards from my Aunt Beth the other day.  I really liked the sentiment of this card and wanted to share.
Peace, Hope, Comfort
Wishing you peace...the calm that comes from trusting in something beyond yourself
Wishing you hope...the strength that comes from believing in the possibility that happiness lies ahead of you.
Wishing you comfort...the feeling that comes from knowing how much others care for you.

I feel like there is such strength in this message and it is so true to how my heart feels about having peace trusting in God, having hope that this next year will bring good things and I am always comforted by my friends and family including you reading this!   And thanks Aunt Beth and Aunt Debbie for  all the cards week after week!

Warrior T-shirts are here!

The warrior t-shirts are here!!  I think they came out great, so I need to get organized and distribute them!  text me or email if you want to stop by and pick yours up, otherwise I will mail when I get a chance, if you need my mailing address to send a check let me know and if I don't have your address to mail yours send it!

I had my appointment with the general surgeon today and he said that he definitely thinks I could have a hernia.  He said he could do exploratory type of surgery and go in and see what is causing the pain or he could order a scan to check it out, um yeah option B please!  We tried to see if during my PET scan next month they could do a cut of that area to see if it's a hernia but apparently they said they can't do that.  Now I am awaiting for scheduling to call me to set up an MRI instead.  I am kind of glad because this way I can find out sooner what we're dealing with.

possible hernia and painful port

I had a yearly physical last week with my Nurse Practitioner.  She is the third medical professional I have discussed my scar tissue with and the first to finally hear me.  There is one in particular that seems to get "stuck" for lack of a better word.  It happens multiple times a day and at night.  It is so painful I can barely move and certainly not take deep breaths until it pops back into place.  The NP told me that my description sounded like a hernia and she referred me to a general surgeon to have him take a look.  They might need to do some type of scan to be able to tell, so I'm not sure when I will actually know if it is or not.  I am certainly not excited about the idea of having another surgery but if it resolves this painful problem I am certainly not opposed to it.  I have an appointment with the surgeon on Thursday this week.

My right shoulder where my port is has started to have sharp shooting pains.  It is positional and mostly happens when I'm laying down.  The NP examined me and said she believes it is the port.  The ports can stay in for up to 5 years and needs to be flushed every 6 to 8 weeks.  I haven't really thought about having mine taken out, but I am starting to consider it.  The big deal with this is that if I ever did chemo again I would probably want it put back in, so 2 more procedures verses none if i leave it in.  The more and more research I do however, really puts me in the position of not ever wanting to do chemo again, so part of me feels like it's an easy decision.  My big fear of having it removed is that the drugs they use there do not put me to sleep, unlike the colonoscopy did.  So I was awake the whole time last time, even though I couldn't feel it, it was very traumatic to know what they were doing right below my head and hear and be aware of it all, I will not look forward to that!

I am a few weeks away from my retreat and getting pretty excited.  My shirts should be done on Thursday and I was hoping I would have them in time to wear mine to the reterat.  I will need to get in touch with all 69 of you that ordered one and make sure you get yours after I receive them!

it's been a while

I had a friend visiting and she was telling me how she's missed my blog posts.  I think I feel like I really only have complaints to file lately so I don't want to be negative on here.  I did realize however that I could reword them as prayer requests of things I am struggling with. 

Here are some of my struggles:

I have developed painful scar tissue with 4 of my 5 incisions from the ovary surgery.  The weird thing is that my incisions are right next to the ones from my first surgery and yet I had no scar tissue develop from those, at least none that are causing me daily problems.  It is hard to sleep at night because I have them on each side of me.  It's also starting to be painful to pick up the kids and put them on my hip.  I have spoken with my surgeon and I brought up the point that maybe having chemo after the first surgery effected how I healed and that is why I am healing different with this last surgery.  There isn't anything they can do for me, but I am going to try massage to see if it helps.

I am still napping every day.  My only issue with this is that it makes me nervous about returning to work in September.  My return to work date is Sept 18.  This is the week following my retreat in Atlanta.  I am anxious about work, that I will be mentally exhausted and not be able to handle it.  I am starting off with only 12 hours a week so it shouldn't be too bad.  I do want to go back and I miss it, but I am nervous about it exhausting me.  I figure if i can handle 7 days a week with the kids I can probably handle working!

Now for some things I'm grateful for:


I have managed to run regularly still.  I have had some gracious offers from people to watch the kids for me to allow me to run.  I still struggle with running, I don't necessarily enjoy it, I am very slow and it is hard for me but it proves to be a great work out to get that oxygen flowing.

I have enjoyed spending so much time with the kids.   I did find myself today however, sitting in the car alone, eating a chocolate vegan cupcake.  The kids were with the sitter and I had spent my free time running and cleaning the house and napping.  I had timed it so i had enough time to stop at the bakery that makes these cupcakes and shove one in my mouth and still get to them on time to pick them up.  And it was a delicious, amazing 30 seconds of chocolate heaven! 

I recently watched another video that promotes the diet I am on.  It was a good refresher to tell myself why I am not eating meat and dairy.  I am so looking forward to the retreat in September and I can't wait to learn from it.  I have finally started baking again, of my favorite things to do.  The best part about vegan baking is you can lick the batter and not worry about salmonella!

The GI Dr just called me and told me that they did biopsies on parts of my colon when they did the colonoscopy and everything came back negative.  He said to keep doing whatever I'm doing!

I finally switched vendors for the cancer warrior t-shirts and I think it will go smoothly from here.  I am going to place an order tomorrow and will let you all know when they arrive.  They will be $15 a piece.

I also received this from my mom recently.  If you click on the link it is an interesting article about how to handle illness or something similar with friends and family.  I found it really interesting and thought I should share http://articles.latimes.com/print/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407

I am also thankful for my husband and his amazing garden in our back yard.  I literally walk out the door and pick kale and beets for my juicing, it's great!

cancer warrior t-shirt design

My brother has been helping me with my t-shirt design.  This is what the shirts will look like, the women's will be in blue I just couldn't get it to display here in the right color.  I am selling the shirts at cost (price still undetermined but around $15)  I might switch vendors so there is still time to order!  Leave your order as a comment on blog or email me leahinnewport@hotmail.com.

 

 

All is clear

Thank you all for your prayers!  Everything went great!  No problem with IV and prep wasn't too bad.  Everything looked clear and I don't need to go back for 2 years instead of 1!!!

Colonoscopy tomorrow 8/15

I have my colonoscopy tomorrow, I have to be there at 7:45 i think procedure is at 8:15.  Please pray for my anxiety and that they don't have trouble with my veins as they won't be using my port.  Also please pray that the medicine to sedate me works as I have had trouble with it in the past.  I am also of course worried about the results!

Also I did find out that the women's shirts come in XXL.  Also I forgot to mention that the women's shirts are V-neck style. I would like to place an order early next week for these.  Many of you have told me you want one but haven't placed an order so please do ASAP!

Warrior t-shirts

I was pleasantly surprised by how many people expressed interest in the warrior t-shirts I am having made.  Unfortunately it is taking a little bit longer than expected to have the graphic artist do a draft of my design.  I thought in the meantime I could do a post to ask everyone who wants one to email me so I can place a big order all at once.  They are going to be light blue with dark blue font (colon cancer color).  They won't be more than $18.95, depends how big my order is.  The women's shirts will be sort of fitted and the men's will be regular t-shirt style.  If you could email me the following it would help speed the process along;
1. Pick men or women's style
2. Quantity
3. Size
4. Address if you dont live close enough to and want it shipped
My email is leahinnewport@hotmail.com
 I think the easiest way to take payment will be to mail me a check but I have to get price finalized.  Thanks everyone!

Gratitutde

I have been thinking again about how grateful I am for so many things I have going on in my life right now.  This is the first summer since I don't know when, that I have been able to spend all my time with my kids and my mom!  She leaves on Monday (more on that later).  I have been feeling fairly good except for still being really tired.  I am still napping and I am not sure I will be able to do that after my mom leaves.

The diet is going really well.  It is pretty empowering.  I believe it is working, so that's all that matters I guess. I feel like I have control over something and that feels really good.  I am also exercising regularly (which I also don't know how to continue without my mom to babysit while I do so).  The exercise is very empowering as well. When I have to push through a hard run I just tell myself how good it is for my body to be pumping all this oxygen through it, cancer doesn't like oxygen, so take that, cancer!  I have been juicing every day and that always makes me feel good. It feels so good to take control over all these things and for that I am grateful.

Another thing I am grateful for is my sleep!  When I was on chemo I had a lot of difficulty sleeping.  I would wake up in the middle of the night for hours, not able to fall back asleep.  I can sleep all night now without that happening and still take naps.  It is a great thing to be able to sleep and for that I am grateful.

I am so grateful that I have such a loving and great husband.  He has been there for me through everything and been by my side whenever I needed him.  He has had to listen to the kids ask for me when I was sick in bed through chemo and be the one to tell them that mommy can't come read stories right now.  He has been a great father as always but has really handled everything with grace and I never have to worry about my kids hearts or heads when they are with him!  He has been a rock for me and without him I wouldn't be as strong as I am through all of this. 

And last but of course not least I am thankful for my mom.  She has basically turned her life upside down for me since September of last year. She has moved out here and gone home only for short periods of time to check on her business and her home.  She has been here through everything and for that I am eternally grateful.  She has slept in the hospital on tiny couches to keep me company and stay by my side.  She has held my hand, my head and my heart in hers and I know will always be there for me.  We both joke that hopefully she will only be back for vacations from now on but both know that probably won't be the case.   As I well know, the love for your children is something that nothing compares to.  Like I said earlier, I don't know how I will be able to nap without her here to babysit, how I will be able to run without her here to babysit and how I will be able to keep myself sane these last weeks of summer without my built in free nanny! 

Thank God for moms and of course thank you God for giving me the best one in the world, how could I be so lucky! :)

DOB: 7/22/1980

I feel like I have been asked my date of birth (DOB) a million times in the past year.  Every time the nurses give you chemo or any medication they have to verify your DOB.  Or even just checking you in for an apt, before they put your ID bracelet on you have to recite it.  Even just to make an apt or ask a Question, it's always ok, DOB please.  I feel like I have a new perspective on birthdays now.  They have never really haunted me or phased me In the past.  I am so fortunate to have found my husband by the age of 23.  I was married by age 26 and had my first beautiful healthy baby by age 28.  I've never felt like I should have done more than I had at each birthday and didn't mind turning 30 when I had everything I had ever wanted.  I know a lot of people dread birthdays but consider the alternative to not having one, yeah now be happy and celebrate that you just survived another year no matter what age because that's how I will feel next year!

I used to like to go out to eat for my birthday.  I have to admit I don't enjoy going out to eat as much now that I'm following a vegan diet.  I have to be one of Those people who picks and chooses things off the menu and alters their selection.  I want to explain to the poor waitress that I'm trying to save my own life and whip out an article on how vegan diets and juicing beets fights cancer because I'm a "cancer warrior" now!  (More on that term later)
I have had so many internal arguments with myself over calling myself a cancer survivor or using the phrase that I am "fighting cancer".  I have read that using negative connotation with cancer is not beneficial.  Having negative thoughts of any kind is not good for the head, body or soul.  We all know when you have cancer you dont need anything else against you, the cancer is enough.  So I have come up with the phrase that I have on the template of my blog "encounter with cancer".  I had journey on there for a while but felt that was too fun of a term.  I mean there's being positive and there's making cancer look like fun, lets be reasonable folks.  

So what's my problem with the term "cancer survivor"?  I don't have any issues with it except that I dont think it applies to me yet.  Technically I think I fall within the definition, at least  Wikipedia thinks so.  I just feel like I'm still currently "fighting" so I have dubbed the term "cancer warrior".  Feels more like an appropriate phrase and I think it's positive.  Now I just have to have my t-shirts made with the logo idea I have In my head.  No I'm not kidding, you want one?
Anyway I digress, happy birthday to me, the cancer warrior And may I soon feel like a cancer survivor who has won all the battles and the war!

Good News Finally!

What does a cancer patient say when they find out an MRI and CT scan picked up a blood clot on the liver and not a tumor?  They say yippeeee!!  The Dr called me and said that he had 2 radiologists read the MRI and they said it was a blood clot in my liver.  Apparently this is common after pelvic surgery like i just had and he said that it should resolve on its own.  I will get an MRI in 2 months to check on it. 
>DEEP BREATH<

The MRI yesterday, much like the last one, was very traumatic for me.  I get put inside this tiny tube for 30 mins and can't move.  And then as if that isn't enough they basically blast air horns at you for 30 mins.  Yes it is THAT loud! Seriously?  Having cancer and going through everything I've been through isn't enough, I have to endure this too??  Thankfully the Techs are super sweet and understanding.  I don't look forward to the next one but I will survive.

So finally some good news.   Please join me in smiling and cheering and being grateful and relieved and thankful.  Now I just need to get through this colonoscpy in August with clear results and we will all be breathing a little easier UNTIL the next scan, but that is my life now. 

MRI Today

I got an MRI today at 4 and we are still on for an apt tomorrow with my oncologist and they hope to have the results, so hopefully all this anxiety and worry will be resolved tomorrow with good news!

preliminary of scan

So Bryan and I both had the same opinion that we would just wait until Friday and not call to get results of my scan before then.  Then a few hours after the scan my oncologist calls me.  He told me that my lungs looked the same, awesome news!!  Everything else looked good except there is something on my liver and he wants me to get an MRI to get a better look.  He said the radiologist had just called him and wanted him to order the MRI and that it could possibly be a change in blood flow they are seeing.  I have no idea what that means exactly but let's hope it's that!

  I feel like we have been down this road before and I don't like where it ended so let's hope for a different path.  At least this time I know better and will only be making one trip to get the MRI done!  I am awaiting the phone call to schedule it and for now my Friday appointment is on hold until we can get this scheduled and get the results.

GI Dr

I met with my GI Dr today, the one that performed my colonoscopy last september and had the lovely pleasure of discovering my tumor.  The earliest he could move up my colonoscopy was Aug 15.  It is about 6 weeks earlier than the previously scheduled one, but not as soon as I was hoping.  He didn't seem horribly concerned yet of course he agreed we need to do a colonoscopy as soon as I could get in.  He was also very interested in seeing my scan i'm getting done tomorrow, so hopefully nothing lights up on that in that area or any other!
 
I have my scan tomorrow and then will meet with my oncologist Friday to discuss results, so hopefully I will have good news Friday!

vacation!

Well we had a great vacation!  First to Bryan's dads retirement party then onto Bryan's family's vacation place in the adirondack mountains.  We met some nice people and it was good to get away and spend time with family.  Bryan's mom and stepdad were there all week and then His dad and stepmom came up for our last night.

Unfortunately my symptoms seem to have gotten worse so I'm seeing my GI dr Tuesday and hoping to move up my colonoscopy to a closer date.

 On a positive note I had the most amazing vegan meals while I was gone.  The place we stayed at serves breakfast and dinner and they are traditional meat based American dinners.  I requested vegan food and got the best meals!  I did not miss the usual chicken and biscuits or turkey dinner that used to be my favorite. My favorite vegan meal was last nights sweet potato and red pepper quesadillas!

I think the best part of the vacation was the experience of being surrounded by people that I don't know and don't know anything about me and my cancer.  Normally this would not be the ideal situation I would feel comfortable being in.   I only talked to one person long enough for it to come up in conversation and share my story.  It was a weird feeling because there are lots of young families with kids that all seemed so happy.  I mean you're on vacation and your meals are being made for you, dishes are being done for you and you can wake up and walk down a short hill to the lake and beach, what more is there to ask for.  Bryan has been going there since he was in utero and it is his sanctuary.  Thankfully he seems willing to share his fortress of solitude and as this year was my 8th year going I found it to be very therapeutic as well. I would sit at the beach and wonder what everyone else had to deal with in their lives this past year.  Maybe they had a similar battle and survived to come here and we all deserve this week, these moments of time to relax.  It surprisingly seemed easy to escape from my head and body and just breath for a while without my cancer following me.

Back to reality at home I face a scan this coming week and hopefully a colonoscopy soon (never thought I'd say those words).  My life is not a vacation nor will it ever be, but neither is yours.  All we can do is take what we are given and  just keep living.

Plant Strong

My brother has been in town for almost 2 weeks now and he has been introducing me to some vegan recipes and of course more juicing.  The kids are joining in as well and love it despite protesting it is too loud!

I have registered for my retreat in September followed by my colonoscopy that I am due for, September 26.  But before all that, I have my next scan July 17, a few days after I return from vacation.  I have a drs apt to discuss the scan July 19.  I am really hoping this doesn't ruin my birthday on July 22nd, it will be hard to want to celebrate if they find something.    I have quite a few symptoms that could be related to the cancer coming back or could be totally unrelated so  it is very nerve racking.    I guess this will be the rest of my life! I also feel as though my neuropathy  just made a jump into getting much worse instead of better, which surprised me since it hadn't gotten worse in about a month.   
 
I am really trying hard to follow a vegan diet. Check this out. http://m.huffpost.com/us/entry/2250052 I think the coolest thing about the study at the link above is that even after 2 weeks of changing their diet they noticed a significant difference in their bodies fighting off cancer!  Here is a vegan lasagna I made tonight, soooo good!

(recipe: http://engine2diet.com/recipe/raise-the-roof-sweet-potato-lasagna/ )

I am off for vacation in a few days and I am sure it will be challenging to follow my diet as well as be surrounded by strangers that have no idea the fight I have been living.  I just hope I can relax and enjoy my time with the kids and Bryan and forget about my worries for a little while, as hard as that may be.  Happy 4th of July everyone!

Didn't you know? Chemo is toxic!

I just met with my oncologist here in providence.  He did speak with my dr from dana farber.  He seemed perfectly fine with my decision and also mentioned that the IV chemo they wanted to use has a high toxcicity and he sees why waiting and watching was recommended by Dana farber drs.  I also ran into my colorectal surgeon at the hospital after and he was very happy to hear my decision and told me twice he is so glad that I decided not to do anymore treatment.

Speaking of chemo being toxic, I am in the process of registering to attend a holistic cancer conference and retreat in Atlanta in September.  My aunt who is an ovarian cancer survivor agreed to go with me.  I feel like it will be a good thing for me since I am not doing treatment now and I am using diet to help keep the cancer away.  The conference will have cancer survivors that didn't use chemo and are now cancer free all through diet.  I am excited to meet and spend a weekend with others who have traveled a similar path and I am sure have some advice and knowledge to share!

summer!

I have felt the need to blog but I don't really know what to say.  I have a call into the dana farber Dr as of this morning to see what her colleagues thought of my case.  I also have an apt to see my oncologist here in providence on friday.  I spoke with him last week and he seemed to think it was very reasonable to do the wait and watch approach at this point.  He also agreed a scan mid july was a good plan. 

I feel so relieved that summer is finally here!  I had my first real beach day and discovered my almost 2 year old is terrified of sand!  we had him touching it in no time but it was a great thing to watch, my kids are always surprising me.  I hope to go back to work in September.  I am still taking naps and feeling tired, but I hope to be feeling really good by then.  That will be about a year since this all started and that seems so crazy to me, who knew that I would be spending a whole year like I did. 

I still feel so blessed.  I have the two most beautiful children in the world, I mean what are the chances right?! How did we get so lucky?? ;)  Thanks to my neighbor who took these pictures of my little ones. 

I think one of the hardest things through all of this is to just be with them every day and think that I might not get to see them grow up.  I know I shouldn't be thinking that way but it is impossible not to go there once in a while.  I have heard recently that there are some people that find it too hard to read my blog.  I totally get that, but I just wanted to say that I appreciate everyone who does and continues to support me.  I need you all, you are what get me through the rough patches and I know as rough as these last 10 months have been, there is so much more to face.  Stay with me!