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!