Treatment 5

Hope everyone had a merry Christmas!  I was feeling really good, other than dreading the next day of chemo.  My favorite gift was a new Vera Bradley bag to take to chemo.  I had a bag I bought and the zipper already broke so that was a bummer. 

Treatment 5 was a little different this time.  They insisted on giving me IV benadryl to prevent my allergic reaction I had last time so that made me loopy and sleepy.  I think I'm still feeling the effects of it today sleepy wise.

The meeting with the oncologist was interesting.  He said that he still wants to see the larger nodule in my left lung come out regardless of it changing size or not throughout the rest of my treatments.  So after all my treatments are done it looks like I will have another surgery.  I am just kind of glad to have some kind of definitive answer on that even though I don't like it.  He is being cautious about it so I guess that is good.  There is no good way to biopsy it because of its location deep into the lung.  So this will be the best way to find out what it is.  The surgery would be at RI hospital, not the same hospital that I had my colon surgery at so I am kinda bummed about that, I liked it there.  It will be a thoracoscopic surgery so there will be small incisions and my stay should be similar to how long I was in the hospital for my colon surgery.  So I guess it's good I won't have anymore big incisions I can just add to my plethora of holes I have all over my body, can't wait for bathing suit season :(  I seriously already feel like I look like I had shards of glass go flying at me and leave cuts all over my torso. 

The thing that still remains and could still remain unknown for a while is whether or not I am stage III C or stage IV.  If they take out that nodule and pathology report comes back saying it's not cancer, then what about the 3 smaller spots on the right?  We will just watch those through scans for months to a year after to see if they change.  This is what makes it hard because if it hasn't traveled to my lungs they will probably want me to do radiation on my colon area.  This is because if it hasn't spread to my lungs they want to try to decrease my chances of recurrence in my colon.  I am not thrilled about the idea of radiation for many reasons, it only increases my chance of it not recurring in my colon by 5%, not a lot.  And the long term and immediate side effects are very long and scary.  I will have an appointment with a radiologist to discuss this at some point.  It would be 5.5 weeks of going M-F to be zapped, so a total of 28 times.  Yikes!

is it cancer in my lungs or not?

We had my apt with Dr. Ng this morning.  It was a very confusing visit to say the least.  This lung surgeon seemed to have differing opinions from my oncologist.  Some of them give us some hope although it was good and bad news. 

The good news:  Dr. Ng is not convinced that the spots in my lungs are cancer.  He said that the PET scan does not guarantee what it showed as lighting as being cancer.  This is not what I was lead to believe when the oncologist read me the results of the PET scan.  The other good news is that the spots on my right lung that we were lead to believe showed up recently as the cancer spreading to my right lung, were actually there on my first scan back in September.  So this means that the nodules could be something other than cancer and that we don't have proof that it was quickly spreading.  Dr. Ng did not seem to believe there were any changes between the scans (which is good news).

The bad news:  we don't know that it's NOT cancer.  This means that we need to wait until another few months to do another scan and see if there are any changes.  If the spots grow, I will need surgery to remove them.  If there are more spots this is bad because the surgeon only wants to remove about 4 (which is how many spots I have), if there are more than that the quality of life in my lungs decreases and I would be losing too much of my lungs.  If the spots grow he suggested changing my chemo because it is not being effective in the lungs.  I feel like it's bad news to not be able to have surgery because it means the cancer is too far along and is spreading too fast and not responding to the chemo.

So basically we pray that there are no changes at all with these spots because that would mean that they are not cancer and are not responding to the chemo either way.  We will do a scan in a few months and if there is some shrinking or growth we will know that it is cancer.  So it's a waiting game. 

Dr Ng 10am Fri

I just got a call from the lung surgeons office that I have an apt tomorrow at 10am!!!  I am so excited that I can get some answers so soon!

Dr Safran scan interpretation

I did get to talk to Dr. Safran earlier today.  He said, "This was a good scan after 4 treatments."  He also said that the spot in the lungs on the left that is bigger we had known would need to be surgically removed and he didn't expect the chemo to shrink it.  He did say that he thought the spots on the right lung that were smaller had indeed shrunk a little bit. 

The plan for now is to have Dr. Safran talk to Dr. Ng (lung surgeon in providence) and they are going to set up an appointment for me to meet with Dr. Ng.  He said that the earliest they would want to operate is after 6 treatments but we need to talk to Dr. Ng to find out what he wants to do.  So for now we are just waiting for the apt date with Dr. Ng. 

I am not looking forward to another surgery and was really secretly hoping that I wouldn't have to have one but I guess I need to face the fact now that I definitely will.  Just hoping it doesn't impact my AZ trip, but hopefully we will know that soon.  

CT Scan of Lung 12/17-results

I don't have too much information to give but I do have the results of the CT scan done yesterday on my lungs.  I was told that it showed no changes from the last PET scan.  I wasn't able to get a hold of the Dr yet.  I gather that this means that all the spots are still there and they haven't grown or spread which is good but they haven't shrunk either.  Not exactly what I wanted to hear. 

3 of the many things to be thankful for

I have been feeling much better this round.  I'm not sure if it's staying on top of my meds or all the ginger I have been drinking.  It sounds easy but taking my medication at certain times and making sure they don't run out too close together is really important and I think that might be part of the reason I was feeling so sick last time.  So I am grateful for this time being better!

So I have been meaning to do another post about some of the things I have to be thankful for.  Here we go:
1. My job and my awesome company that I have worked for 10 years this coming January.  It seems odd for me to even say "my job" because I haven't worked in over 3 months.  I do however, still have a job to go back to as far as  I know and wonderful people to work for and with.  The Senior Vice President organized a photo opportunity of some of the employees at the company with their Ploutz Power bracelets.  The photo below shows what I was presented with.  It has a nice saying on it: "Once you choose hope, anything is possible.  A friend is a hand that is always holding yours, no matter how close or far apart you may be.  With heartfelt wishes in support of Leah and the entire Ploutz Family:  A collection of SEA CORP hands with "Ploutz Power" BANDS!

2.  My hair!!  I didn't want to jinx it but I think it is safe to say that I will not be losing my hair.  I have had 4 treatments and I don't show any signs of my hair falling out or even thinning!  I am very excited about this! 

3.  My friends and family.  I have had 699 unique visitors to my blog.  This means there are so many of you out there praying for me that I don't even know and have never met!  And it is working.  I feel so loved and supported through all of this and that is the best we can hope for. 

My friend Christine has been sending me flowers that she crochets every other week and I now have a beautiful bouquet of them.  She prayers for me while she makes them and sends the prayer along with the flower, how cool is that?! 

Another friend of mine, Cheri, gave me this wonderful frame that has our last name spelled out with letters found in nature.  It is now hanging in our entry way.  The frame says "Strength does not come from physical capacity.  It comes from an indomitable will." Ghandi

My friend Kim ordered more Ploutz Power bracelets.  If there is anyone that hasn't received one and would like one please let me know!

 

Silent Auction for Boston Celtics Tickets!

Leah and Bryan's friend Mark has generously donated a number of seats to be auctioned off that benefit Leah's fund and will be in your hands before Christmas. Below are the details provided by Mark:

Silent Auction for Boston Celtics Tickets 

Every dollar will go directly to Leah and Bryan Ploutz.
The following games and seat locations are up for auction, starting now!

Wednesday January 9th 7:30pm vs Phoenix Suns
2 together Loge 10 Row 11: Opening bid $220/pair

Friday February 1st 7:30pm vs Orlando Magic
4 together Section 321 Row 1: Opening bid $168/for all 4.

Saturday March 16th 7:30pm vs Charlotte Bobcats
2 together Section 329 Row 9: Opening bid $92/pair

Sunday April 7th 6:00pm vs Washington Wizards
3 together Loge 7 Row 7: Opening bid $195/for all 3.

Please email all bids to: MarkPietrantonio@gmail.com

Please include your name and phone number, in addition to the game(s) and bid(s) you are submitting.

High bids will be updated daily as a comments on this blog post or you can email Mark.

Auction Ends Thursday December 20th at 1PM.  Winners will be contacted that evening.  

Payment can be made through the donation link on Leah’s blog or a check can be sent directly to Leah and Bryan.  Tickets will be in your hands before Christmas. If there are any questions please email Mark or call him at 339-793-1452.

almost 1/3 of the way there

I had my 4th chemo round today, so I am almost a third done, I still have the pump on so in 2 days I will be done with 4th treatment. 

It was interesting today to say the least.  I had some chest pain last time with the pump on followed by a few days of heart palpitations.  I wanted to make sure the Nurse knew this so I told them and now if the symptoms reoccur they want me to come in.  Also they gave me something to prevent it.

I also had another allergic reaction with a rash on my chest and back.  This is common and a lot of chemo patients get benadryl as a premed drug but I have huge issues with benadryl in the IV form.  They wanted to give it to me but I ended up getting xanax instead and a pill form of benadryl.  The IV benadryl just hits me so hard, last time they said they gave me a low dose and I literally felt like i was levitating.  Some people might think that would be cool, but anyone who knows i haven't done one drug in my life or smoked anything knows I do not enjoy out of body experiences or anything like that!

Wish me luck with these next few days!

stronger

My cousin Rachael showed me this video on you tube today and I was so inspired by this girl.  Check it out, I wish I could be as cool as her!  Stronger I cancer video

my mommy is here

I forgot to tell everyone that my mom finally arrived last week!  I hadn't seen her since after the surgery before any of my treatments or port and it is so nice to have her here.  Need I say more, really? 

I am doing much better today, finally had a dinner last night that didn't consist of toast!  Thanks to Bryan's mom for cooking for us all weekend!  I am trying to get into the holiday spirit and decorating the house and I can't wait to make loads of cookies with my mom and Elly.  Everyone who knows me, knows how much I love baking and I haven't baked one thing since I got diagnosed, so there is a lot of make up baking to do!  Yum!

A new day

I haven't posted in a while because I haven't felt good at all.  I have been battling the nausea and had really rough evenings with it.  Today is a new day and I hope to be doing better today! 

I meant to tell everyone that I have a CAT scan scheduled for Dec 17th.  Dr. Safran wants to check on my lungs and see how the cancer is responding to the chemo.  So that is something to pray about!

Amazon Link

Hey everyone, this is Ben. The Amazon link is going great, thanks! I heard someone is not seeing the right column on this blog which contains the link, so I'm putting it in this post and at the very bottom of the blog site.

Click Here -> Shop Amazon anytime you're going to shop at Amazon. Amazon will credit Leah's Fund (no additional cost to you) a tiny % for any items thereafter which you add to your cart and purchase.

And to answer a few questions about it:
1) Yes the link simply takes you to the Amazon home page (you won't see any special messages confirming this). From there you can continue shopping as usual.
2) If you already have an item in your cart before following the link, it won't count. You can always remove an item and then follow the link and add it again.
3) You do not have to follow the link before every item you add to your cart. Just follow the link once and you can spend a few hours and shop with any items you add to your cart counting.  Once a product has been added to your cart, it's associated with Leah's link for a number of days, you don't have to purchase it immediately.
4) If while shopping you go to another website that has a link to Amazon and you follow it, then that would take precedence and become the site getting credit for referring you to Amazon for any products you add to your cart thereafter until you followed the link here again.

If you want to read the earlier post explaining more about the Amazon link: click here.

Trying to love it

I continue to have an infection in my port. I was, fortunately, able to get chemo today through it. the dr put me on a new antibiotic and we are hoping it goes away soon.

 

  Unfortunately all of my side effects seem to have intensified this time. I have the daggers in my throat and I can't touch anything cold with any part of my body including exposure to the cold air on my face. My calves continue to ache really bad when I walk. I also somehow have managed to partially dislodge my pump connection to my port and the visiting nurse should be by shortly to help me with that. Overall I am nervous about the days to come and hoping I can continue to do walks outside but I might have to go to a treadmill where it's warm!

Black Friday

I hope everyone had a nice Thanks Giving. I went up to Maine to be with family. I spent most of black Friday in the ER. I had noticed on Thanks Giving that my port looked like it was getting a little infected along the incision. I called my Dr Friday morning and they told me to go to a walk in or an ER up in Maine to get it looked at. The port has a direct line to my heart so getting an infection there is not good. Also my body can't fight off infections like it should because of the chemo.

We headed to a walk in around 10am and they sent us to the ER.  We finally got back to my cousins around 3pm.  They actually did get me right into a room so that was nice.  I had to have a round of IV antibiotic which took about 1.5 hrs to run.  Then they gave me oral antibiotic pills to take home.  They did labwork on the actual wound and lots of blood work.  No results yet.  I plan to go to my chemo appointment as scheduled on Tuesday and the port looks and feels a lot better now.   Not how I wanted to spend part of my trip but I am thankful for the Drs knowing what to do and for antibiotics!

Happy Thanksgiving! Amazon shopper?

Hi everyone, this is Leah's brother Ben. We're having a great Thanksgiving in Maine visiting family and hope this finds you cozy and well fed! This is a quick note about an additional way to contribute to Leah's recovery fund, for free! If you happen to shop on Amazon.com in the coming days or months: Follow the link found a little ways down on the right column of this blog each time you decide to shop and Amazon credits Leah's Fund (no additional cost to you) for any items you thereafter add to your cart and purchase.

This will not change your shopping experience or pricing on Amazon, however Amazon will credit a special account setup in Leah's name ~5% (yeah it's not much but will add up!) of any items purchased on Amazon during that shopping session. You don't have to do it before each item, just do it once before you start adding items to your cart.

Feeling like myself!

Had a GREAT day today!  I was with the kids all day and with Ben's help took care of them all day and didn't even have a nap!  I think I will be going to bed early tonight!  I also went for a 2.5 mile walk with Ben.  I ran a little bit the last few times I went for walks and felt great.  I felt really weak the next day but it felt good.  I really felt like myself today and it was so nice! 
I was trying to come up with a new past time to keep myself busy and someone had asked me, "what do you like to do?" The first thing that came to mind was, RUN! So I hope I can get back into it. They are saying now that exercise is a really important thing to do during chemo, so I am all over that!

Happy Birthday Bryan!

Just had to tell everyone that it's my husband, Bryan's birthday today!  We are now the same age!  And we all know I couldn't do this without him!  Happy birthday Bryan!

more juice!

Here was our first attempt at combining a ton of veggie goodness all in one juice blend. Look at all those veggies!

Cucumber, carrots, celery, broccoli, kale, apples

Ben the Juicer

My brother, Ben, flew into town on Wednesday and is going to be staying with us for a few weeks. He has been talking about using the juicer Bryan's Dad and Step-mom bought me. He is really into juicing and I have been excited about having my own personal juice chef! Unfortunately, no ice cold beverages for me, but I have been OK with room temperature ones and he is willing to accommodate, isn't he awesome :)

I am feeling much better today than the Friday following my first chemo treatment. It doesn't seem as though a trip back to Miriam is in my horizon for this treatment so far! As much as I love them it is so nice not to be feeling horrible!

The visiting nurse came to detatch the pump yesterday and all went well. They say around the time the pump comes off, being 48 hrs after treatment, is when patients seem to be feeling the worst. (which is what happened last time) I did ok so maybe the worst of this treatment is behind me, let's be sure to pray on that one!

Sporting Vera Bradley

Just because I have to carry a chemo pump for 48 hrs doesn't mean I can't do it fashionably! my friend Katie heard me mention wanting a fancy bag for my pump. It isn't hard to beat a black fanny pack, I mean come on, really?! I know I'm too young to get cancer but I'm not 10 and it is not 1990! So she bought me a little hipster vera Bradley bag, how cute is this!? thanks katie!

My aunt Joanne took me to chemo today. It was a long day starting with blood work at 9am and then an apt with my oncologist, who is amazing by the way. He is just awesome, love him, the absolute best. and I'm not just saying that because of his answer to my question of being able to travel. when I asked if my mom could take me back to Tucson with her for a week between treatments he was totally onboard!! Hello 80 degrees and sunshine in the middle of winter, oh yea and I'm not taking the kids, sorry Bryan! So we might be in need of some extra hands that week! I will let you know when I book my trip!

Unfortunately I'm experiencing a few more side effects already after the treatment today. I can't drink anything even slightly cool, it feels like daggers in my throat. They warned me about this last time but thankfully it didn't happen with the first round. I also continue to have my joints in my hand feel like they are locked (which makes texting a little challenging, but don't worry I won't give that up). the other major one is cold sensitivity with my skin. They suggest wearing gloves to get things out of fridge and to open car doors, I think this one is imminent

They weren't able to replace the IV anti nausea that I was allergic to but after last times incident of needing to go in 3 days later to get fluids and meds we have some pill forms I took last time that we are hoping will keep everything under control. If not you know where I will be going,and they will take good care of me!

scrabble mania

I think I am officially playing 17 different people on words with friends, so bear with me if I take forever.  And I am pretty sure I am losing almost every game so even though I've only had one treatment I'm going to claim Chemo brain!  Although if all of you have been playing this forever on there, perhaps I will get better with all my practice!

And no I am still not joining facebook, so I can't play anyone on there, sorry!  Still not desperate enough!

Words with friends

Words with friends it its!  Thanks everyone, my user name is giggleah

word games

Anyone that knows me, knows how much I love scrabble.  I am getting sick of playing the computer on my ipad.  Does anyone want to play online or know of any other word game aps I can get and play other people?  I need a new addictive game!

I have been sleeping a little better and yes I'm taking the pills.  I was touched by how many people contacted me over the post about sleeping and were concerned for me getting enough sleep :)

Heard this on Glee (yes I watch it, no judging) and had to post

Whitney Houston - I Look To You Lyrics

As I lay me down
Heaven hear me now
I'm lost without a cause
After giving it my all

Winter storms have come
And darkened my sun
After all that I've been through
Who on earth can I turn to?

I look to you
I look to you
After all my strength is gone
In you I can be strong

I look to you
I look to you
And when melodies are gone
In you I hear a song, I look to you

About to lose my breath
There's no more fighting left
Sinking to rise no more
Searching for that open door

And every road that I've taken
Led to my regret
And I don't know if I'm gonna make it
Nothing to do but lift my head

I look to you
I look to you
And when all my strength is gone
In you I can be strong

I look to you
I look to you
And when melodies are gone
In you I hear a song, I look to you

My levee's have broken, my walls have come
Crumbling down on me
The rain is falling, defeat is calling
I need you to set me free

Take me far away from the battle
I need you, shine on me

I look to you
I look to you
After all my strength has gone
In you I can be strong

I look to you
I look to you
And when melodies are gone
In you I hear a song, I look to you

I look to you
I look to you

Feeling ok

I am feeling pretty good today. I continue to have a lot of trouble sleeping at night. Not always because I am nauseous, mostly becuase I just can't sleep.  I end up awake for hours in the middle of the night.  Tonight when it happens I swear I am going to try to take one of the pills i have to help me sleep.  I never end up taking them (even though this has been happening pretty much every night since I got diagnosed ) everytime I think, this time I will fall back to sleep and I dont need to get up and go take the pill.  We will see if it helps me tonight, they only last 6 hours so it doesn't work to take it when i go to sleep, if only it were that easy.

I ended up with a pretty bad shoulder/neck ache yesterday. I think it's from over compensating where the port is and trying not to use my shoulder.  It feels much better today.

I am actually going to try to venture out and take Elly to a mommy and me yoga class.  my mom took her when she was visiting and said it is pretty low key and that I should be able to do it if I'm feeling ok, so we shall see. 

Missing sunglasses

The day I came home from the hospital after surgery, the 1st of October, my mom came home with me. She misplaced her prescription sunglasses that day at our house and we haven't found them since. She went home without them and I have still been searching! I can't remember who was around tha week but many people were in and out of the house and we wondered if someone might have picked them up by mistake and now has a pair of glasses they can't even wear and were wondering where they came from! If this is you please let me know!

Day 3 Post chemo

I ended up back at miriam Chemo floor yesterday for about 3.5 hrs. I was extremely nauseous and couldn't eat anything. They gave me fluids and some more anti-nausea drugs. I didn't even feel that much better until hours after I left there but by the end of the night I felt like a new person!

Quite a few of the nurses said they weren't surprised to see me back there. They said with this being first round and being smaller weight wise and having been allergic to one of the anti-nauseas they couldn't give me the day of chemo they expected it would hit me pretty hard. I got new anti nausea drugs to take home and they have been working so far.

Thank God for the people at Miriam being so awesome! They want you to be comfortable and insist you should be so they do everything they can to make you that way!! And they really do!

Halloween

I did end up venturing out to go trick or treating with my kiddos. Here are a few pictures from last night. Elly did Drew's make up and I think she did a great job. Drew was not willing to wear his dog ears so Elly wore them for a photo op, and once he discovered his tail he ripped it right off!

Day after chemo

Today was an exhausting day. I slept a lot and it is interesting to see the different side effects of the chemo, like muscle twitching and such. I didn't realize I wouldn't be able to shower for 10 days after the port is put in, so I will have to do some creative bathing. I think I'm tired from the pump chemo that I have on now that runs 48 hrs after the 2 hrs o chemo I got in the hospital. But who knows.

I met with my Dr and he told me that the new smaller spots they found are in the other lung, not the same lung as the original spot. he also said they are new and didn't show up in the scan a month ago so they actually grew in the past month, crazy. he didn't seem hopeful that the chemo would take care of the original spot but did think it would take care of the new ones. we will consult with a lung surgeon but I'm assuming they will have to operate at some point to remove the bigger spot from my lung.

Feeling pretty nauseas today, hoping I can feel well enough to take out my cat (elly) and dog (drew) trick-or-treating, I will have to post a picture of the kids when they are dressed!

Port went well

Leah is getting chemo treatment right now and asked me to make a post. The port went well, no pain. She was given 3 antinausea medications before chemo started, and she had an allergic reaction to one with her throat swelling up. They quickly countered that and she said it wasn't too big of a deal, she's now fine and undergoing her first treatment.

teach visit, port & chemo schedule

We just got back from the teach visit where they explain all about the drugs I will be on for chemo. They also went over the port procedure, which is what I am most anxious about. If you are to pray for anything specific in the next day please pray for my anxiety over the port placement which is still scheduled for tomorrow at 7:30am.

The nurses did say to prepare for losing my hair. They said it really depends on my hair strength and I do lose hair all the time, so not sure if that matters, but it's better to prepare for it than it to be a surprise. Also it might get really thin and not all fall out so if anyone has any scarves?? I don't and don't feel very fashionably inclined to know how to wear them, so please help!

Tomorrow's schedule is 7:30am register at Miriam, 8:30 am port procedure. Recovery from procedure than dr's apt with oncologist Dr. Safran at 12:40pm. Chemo treatment starts at 1pm.

We made it to Pawtucket and back today in the storm, it's not too bad yet, hopefully it won't get too bad and we can have everything as scheduled tomorrow.

PET scan results

Well thank God for the yay list because we have bad news. I just got off the phone with the oncologist and the scan results are in. The PET is 99% accurate and it showed that the nodule is cancer and that there are also other several other tiny spots around it that are cancerous as well. The staging is now changed to stage 4 cancer. The plan is still to use chemo to treat the cancer in the lungs, so thank God for Chemo!

The yay list

Someone from my church sent a really nice card the other day, thanks Joanne! I really liked the sayings in it. My favorite part was,

"God will give you everything you need to do everything He has called you to do. You are in His hands and His will, and there is no better place to be."

With that said, I came up with a list of things that God has given me as tools to survive this difficult journey. This is not an all inclusive list and I am sure I will go back and add to it! I am most grateful for the prayers, love and support from all of our friends and family!

1. My mom, who is like my best friend, is somehow managing to have someone take over her adoption agency in AZ and come out here for 5 to 6 weeks at a time during my chemo and go home for 2 weeks in between to check on things, huge yay for me for getting to spend so much time with her! WhenI moved across the country 11 years ago I have only been able to see her for weeks at a time each year.

2. Getting to spend so much time with my kids, friends and family!

3. By next summer I am hoping I will feeling much better with everything behind me and I can enjoy the beach with the kids and all that summer has to offer.

4. Finding someone to watch my kids the 2 days I needed covered

5. My cousin rachael, who is the closest thing to a sister I will ever have, has been able to be there for my dr visits, surgery and take great care of my children, couldn't ask for a better sister!

6. This chemo treatment is most likely not going to make me lose my hair which seems trivial but it's the little things right?!

7. The way my treatment schedule falls as of now I should be feeling decent for Thanks giving and Christmas!

No results yet

I probably won't get scan results for a few days, but will let you all know when I do. The scan wasn't too bad, I probably could have fallen asleep if I were in there any longer and that was without meds! Crazy how powerful the mind can be! I had to drink some pretty yucky stuff and felt sick all evening because of it. I also had to stay away from the kids because I was radioactive! I feel much better now!

PET scan today

the PET scan today doesn't sound like much fun as I have to let IV glucose solution go through me for about an hour and then lay still for 30 mins while they scan me. Hoping i dont need anti-anxiety meds but i have them with me just in case! wish me luck!

Sunday night Oct 21, 8pm-

So speaking of the power of prayer, someone from our church has organized through facebook a time tonight, at 8pm Eastern time, for everyone to pray for me. So for your Arizona people that is 5pm! Maybe facebook isn't the worst thing in the world after all, although I still refuse to get an account :) So if you can join in please do, like I said it works! Thanks Seth!

The Power of Prayer

I really do believe in the power of prayer. Our good friends, Pastor Mike and his wife Nancy, came over last night. Not only did they bring us an amazing dinner that Elly ate willingly (anyone that knows my peanut size daughter undertsands that is a feat in itself) he also lead us in a few prayers that I wish I could remember. Everyone has been so sweet sending encouraging thoughts and comments about my positive outlook. I'm going to be honest, I had no idea where my strength and positive outlook came from, it was surprising me! After last night and listening to Mike it occurred to me, it has come from God!
Everyone is praying to him and He is filling me with all of this positive energy, faith, acceptance and understanding. One of my neighbors left a comment about her family and friends praying for me all over the country and my first thought was wow that seems a bit extreme, but now I realize it's working! No prayer is too extreme or too much, so keep them coming! I am thanking God for such wonderful friends and family! I couldn't do this without my amazying husband, Mom, Dad, brother, cousins, aunts, all our family and friends and anyone who I don't know that is praying for me! I hope my brother doesn't mind me saying this but several mornings in a row when I found out the staging of the cancer or that it might be in my lungs, I woke up to these amazing emails from my brother. Despite being composed at all hours of the night they were filled with such encouragement! I also as most mothers do, worry about my children during all of this more than myself. Since I used to have Mondays and Wednesdays off to spend with them I have been praying for a solution to my gap in childcare while I go through chemo. Low and behold my neighbor who I have become friends with has accepted our offer to hire her to watch them during this time until she finds a job in her field. This was such a relief to me to know they would have a consistent schedule with someone who I trust. You all keep telling me how amazing I am and I just wanted to say YOU are all so amazing and I am grateful for each and every one of you being in my life!

PET scan and Port

My PET scan is scheduled for this Tuesday the 23rd at 12:45 at RI hospital. The port will be put in the day of my first chemo treatment Tuesday Oct 30th at 7:30am at Miriam hospital. That is going to be a long day!

Pawtucket Oncologist Appointment

Today we met with the oncologist, Howard Safran, in Pawtucket next to Miriam hospital. I felt like it was a better visit overall. He was more positive than the other Dr. and was also concerned about the Lung. He doesn't think I need radiation, but wants to conuslt with a radiation oncologist to make a final decision. He wants to get a PET scan to get a better idea if the nodule on the lung is cancer or not. This can identify if it is cancer but if the nodule is too small the test will not give us a definitive answer of it being cancerous or not. I will be getting the 6 months of chemo every other week. The first day to start as of now is Oct 30th. I am going to get the treatments at Miriam as it seems like the best idea to meet with Safran and stick with him. I got a lovely tour of the chemo rooms. The chemo treatment will be about 3 hrs long. And I will get the pump to take home for 2 days afterward. I do not have the PET scan scheduled yet or the date scheduled for when the port will be put in, but will post those dates when I get them.

Dana Farber oncology appointment

We met with the oncologist Peter Enzinger at Dana Farber yesterday.  He had reviewed Leah's case and also was aware that we were planning on seeing Howard Safran today in Pawtucket.  He implied that he knows Safran very well and that he is more experienced than himself.  He said that we would be in good hands with Safran and that he saw no need for Leah to be seen in Boston. 

Leah hadn't posted about a .7 cm nodule they found on her lung during one of her CT scans as her surgeon lead us to believe that it wasn't a concern as this could be due to lung scarring from a previous infection (ie Valley Fever).  This oncologist was very concerned with the nodule.  After reviewing her case he is concerned that her cancer was lower than originally suspected and therefore could have spread to the lungs more easily.  The only way to tell if it is indeed cancer is to check it again in 3 months after chemo and see if it has changed in size at all, shrunk or grown.  This will show whether or not it is cancer and they will need to do further tests and this will change the treatment plan.  If the spot has not changed she would get another 3 months of chemo with radiation as well.  If the nodule has changed there will be no radiation and concentration for treatment will focus on the lung.  His recommendation for chemo was every other week.  It would be a 2 hour infusion and the day of treatment she takes home a pump that is connected to her port that stays on for 46 hrs He recommends treatment starts 3 to 6 weeks post surgery and we are guessing they will want to put the port in next week sometime. 

This oncologist didn't like the idea of having her receive the treatment in Newport as he said, "a picture tells a thousand words and I would want to see her if I were treating her."  He said that I will have to talk to Safran to see what he wants to do.  We kind of agree that she should see her oncologist regularly and will need to discuss the Newport option today with Safran. 

comments

I wanted to tell everyone that I really enjoy reading your comments on here. I know sometimes google makes it hard to leave them and people have had trouble with it, not sure what's up with that. I think if you have a google account it might make it easier but not sure. I check the blog while I'm sitting around doing all this "healing" to see what encouraging comments you all have written! Reminds me of when I was pregnant and tired and kept telling Bryan, as I sat around and he did everything around the house, that I'm creating life so I'm busy doing something even though it doesn't look like it. So now I'm busy healing watching the two lives I've created running around and keeping everyone else busy!

Oncologist appointments

I have 2 oncology appointments next week. Tuesday I meet with someone at Dana Farber in Boston and Wednesday I meet with one in Providence that works directly with my surgeon. I have also heard that I can have my chemo given to me at Newport Hospital, which I am excited about! It would nice to be able to do it so close to home. Thanks again for everyone's support, It's times like these when you realize how many friends you have and how great they all are at being there for you and I appreciate everything everyone is doing!

Helping Leah

Hi everyone, this is Sarah Grinnell, Leah's cousin. There are many friends and family that have expressed an interest in wanting to help Leah, Bryan, and the kids in some way during this difficult time. Many of you are far away and/or have busy schedules that don't allow for time to prepare meals or help out with childcare for Elly and Drew. A neighbor of Leah's recommended a house keeper that has already come to clean once, and Leah was really excited and happy about the cleaning. Since Leah is still not well enough to do the every day/weekly cleaning she used to, and her recovery now has yet another hurdle due to the latest development, I thought it would be a huge help to her to have this become a regular service during this time.

If anyone is interested in donating money to help pay for this service, I've set up a Paypal fundraising account and it's tied to a special checking account set aside to pay for the service and other incendentals that may arise. At Paypal, you can easily use a credit card and pay as a guest, or if you're a Paypal user you can log-in and do a check electronically. If you would prefer to mail a check, you can mail it to me at my address below. Please do not feel obligated in any way to contribute and I know many of you already have in your own way. If you would like to, please click the Paypal button below.

                OR
Send checks payable to: Sarah Grinnell
Address: 2 Newport Ave Unit A2
                Newport, RI 02840

Thank you all for your support, no matter what form it is in!
Sarah Grinnell

Pathology Report

I ended up getting in to see a surgeon at the office today, not my surgeon but another one.  He did a full post op exam and didn't find anything abnormal, he thinks the nausea is just how my body is reacting to surgery and refilled my anti nausea meds. 

He didn't have the pathology report but logged onto the hospital network and downloaded it while I was there and printed me a copy.  My surgeon hasn't seen it yet and he will be calling me soon with an apt with the oncologist.

I was told I have stage 3 cancer.  The staging is confusing but the way I interpreted it is that I have the worst possible stage 3 without it being stage 4.  It is not stage 4 because it hasn't gone to other organs or structures but it is stage 3 T4a N2b.  The T4a means "tumor penetrates to the surface of the visceral peritoneum"  They tested 28 of my lymph nodes near the tumor and 7 of them tested positive.  This means it is N2b which means "Metastasis in 7 or more regional lymph nodes" and is the highest level of that stage.

As I said I haven't met with an oncologist, hopefully I will have an appointment by the end of the week.  My mom and I asked the surgeon lots of questions that he kindly answered although followed it by your oncologist will have to decide that but basically my cancer is very aggressive which he said it tends to be more aggressive in younger people.  He said he would guess that they would want to aggressively treat me in a few weeks after i have healed from surgery.

Here is a link to a site I found with staging kind of explained. http://www.cancerstaging.org/staging/posters/colon24x30.pdf

Please Pray!!!  That's all I have left to say after this horrible news, not what I was hoping for or expecting at all.


 

the whole story

Some of you have asked how I knew to get a colonoscopy at such a young age, I thought I'd put the whole story as a post so those of you that hadn't heard it could read about it.

When I was pregnant with my second child, about 6 months along I started having rectal bleeding.  At this point I brought it to my Gynecologists attention and he told me that in any other circumstances they might think that something serious was wrong but since I was pregnant and  had never had problems before, we would treat me for hemorrhoids.  I did his recommendations with no changes.  At this point the bleeding was the only symptom.  This continued through out the rest of the pregnancy and when I had my post pregnancy apt when Drew was about 6 months old I brought it up again to the OB.  He then decided I should see a GI Dr just in case and gave me a referral. I then went to see the GI and immediately he wanted to do a colonoscopy. Since at this point, March of this year I still had no other symptoms I was reluctant to do so.  I wanted to see if there was any way to remove the hemorrhoid that I thought was causing the problem.  I did his recommendations to ease the bleeding of what we thought were hemorrhoids and this did nothing. 
   One reason I was reluctant to get a colonoscopy was because my son did not take a bottle or drink from a cup at this point and to get the colonoscopy I would have to pump and dump and I was concerned he wouldn't get any milk from me for a day or so.  After March I experienced change in bowel habits, mostly just frequency increased and lots of cramping.  This continued off and on and eventually just got worse and worse.  At the beginning of August the cramping was so bad and so similar to period like cramps that I saw my OB again.  I hadn't had my period since I had Drew and wondered if the 2 were related.  He did an ultrasound and full exam of bladder, ovaries and found nothing wrong.   A week later in August i had an annual physical with my primary dr where I brought this up.  They suggested I get the colonoscopy and actually got me in the next week for an apt with the GI.  A few days later I had the thought of it possibly being my gallbladder that was causing problems because of more intense pains I had that day after eating a semi greasy meal.  I contacted my primary Dr the next day and had ultra sounds done for gallbladder and that showed nothing wrong.
  I went to my apt the next week with the GI and scheduled my colonoscopy for a few days later.  After the procedure the GI dr met with me and Bryan and told me that he wasn't able to complete the colonoscopy because when he started to put the scope in, right at my sigmoid colon, he ran into a huge tumor which he biopsied.   He told us that he didn't even need to wait for the results of the biopsy to know it was cancerous, he could tell by looking at it.  He then referred us to a specialist, a colorectal surgeon that we could meet with and before we left his office we had an apt for the following day.  The results from the biopsy came back a few days later and it indeed was adeno carcinoma cancer.  Which is good because it is a typical colon cancer vs something else.
   I had CT scans done to make sure there were no more tumors outside of the colon, which there weren't .  Next the surgeon suggested that I have a stent put in later in the week to relieve pressure from the tumor and open up the colon to allow for him to do a full colonoscopy a week later so that before the surgery he would know if there were any other polyps or tumors to remove other than the one they had already found.  The stent was put in on a Friday and just about 24 hrs later came out on its own on Saturday.  I was glad it was out because it only caused serious discomfort and diarrhea since the minute it was put in.  The Surgeon then decided instead of doing a regular colonoscopy to see what else needed to be removed he would do a CT colonograph.  This was extremely painful as they pump you full of air and you can't move while they do the scan.  This test had good results as they saw nothing else in my colon that needed to be removed.
  When the surgery was performed they removed 18" of my colon and were able to reconnect it and didn't even need to give me any kind of external collection bag while my colon healed.  I was eating normal food a few days after the surgery and everything was working!!  and that's the full story!

nausea vs hunger

I haven't had pain meds in over 2 days but am fighting nausea and trying to eat to help with nausea.  Not sure why I'm experiencing this.  thankfully I have some anti nausea medicine that seems to take the edge off but I still am feeling sick the past 3 days and I am not sure what from.  I think a call to the Dr might be in order.  It is clearly not from the pain killers since I haven't touched those in days and thankfully can say that I am not experiencing any pains where my incisions are anymore.

I have one pretty big incision at my bikini line that i have heard compared to a C-section incision. I was a little surprise when I first saw it since i had the surgery laparoscopically but that is the biggest one and where they took everything out from.  Other than that I have one little hole from where a drain was hooked up until about 3 days post op and also 3 other sizable incisions that have glue over them that will eventually peel off.  I debated posting a photo but i will refrain from grossing you all out :)

Ploutz Power!

My bestfriend, Kim, had bracelets made to support my recovery (see below).  If anyone wants one, let me know!  Thanks Kim!

I continue to feel extremely exhausted but the pain meds seem to be working great.  I am getting anxious about my apt next week to find out the results of the pathology report.   Thanks for all the flowers, thoughts and prayers from everyone.  We had the best results we could have expected from the surgery so they are working, keep up the prayers! 

 

Day 5 post op

I am doing pretty well at this point.  The pain meds i'm taking are working very well and I'm sleeping great.  Just very tired all day every day.  I have a follow up apt scheduled for the 11th and we are hoping to have the pathology report back at that apt.

Going home today!

Leah was discharged from the hospital today and is now home, in good spirits!

Leah slept well last night.  This morning her diet was transitioned from clear liquids to soft solids.  Her system is responding appropriately so the doctor approved regular food for dinner tonight.   She is walking as prescribed and naturally tired out by all the effort.    Presently she is experiencing blurred vision.  It appears to be a reaction to a medication.  Leah is reading your thoughtful messages and is comforted by your support. 

Day 1 post op

General recovery going well. Major ongoing challenge of the day was problems with catheter, it was not functioning properly and after several painful removals and insertions, Leah was successful in convincing doctor to have it removed  permanently.  This evening Leah was dealing with common post op discomforts of air in abdominal cavity.  She is looking forward to possibility of eating solid food tomorrow for first time in five days.

Walking about...

Leah is doing well, has been on two walks today and having clear liquids.

Out of recovery...

 Leah was out of recovery at 8:30pm. After a brief time of trying to adjust to pain meds to meet her need, she was very stable, all vitals good. Back in room she is resting/sleeping and just talking briefly in between resting/sleeping.

Surgery Success!

Surgery was completed at 5:15pm. Surgeon says it all went as planned, there was just the 1 tumor and he got it all. 18 inches of colon removed and many nodes for testing. Determined that no bag would be needed! All in all it's the best news we could expect at this point. She's waking up soon.

Going good.

We thought she might be going into surgery earlier but they were just taking her to prep earlier and once she was down there they allowed a few family members one at a time to visit. She went into surgery at 1:15 and they came out once to say everything is going well and so far according to a digital graph it looks like she's 15 min away from coming out which is right on time.

Surgery soon.

Leah's being wheeled to surgery... a tad earlier than expected. Please continue send your positive thoughts, prayers and energy.

Preliminary reading of the scan

Preliminary reading of the scan shows only the tumor we knew about.

At Miriam

Leah had her scan this morning and is now checked into Miriam. The results from the scan are not in yet. Thanks for all of your thoughts and prayers.

the real surgery time

surgery is at 1:00 pm.  I had the wrong time, must be all those great pain meds!  Everything went well with the pre-admissions.  I will possibly be admitted to the hospital after tomorrows scan to stay the night before the surgery.

surgery time

The surgery will be at 11am on Friday.  Going in for pre-admission testing tomorrow at 12:45

CT colonography and surgery dates

The CT colonography is scheduled for 8:30 am on Thursday this week.  This will allow the surgeon to see if there are any other tumors or polyps that he needs to remove during surgery.  The surgery is scheduled for the following day, Friday.  Everything is being done at Miriam Hospital in Providence.