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!