really nauseas

I had an OK day yesterday, not great.  I had this weird vision thing I get and we can't figure out exactly what it's from and still working on how to correct it.  It is gone today so far, so we'll see. 

Hoping for a nice Fall day where I can at least get outside to sit for a little bit.  Today please pray for my nausea and my heart, it feels heavy today.

MRI

So as I lay in my chair at 3am I realize I'll probably be awake for 2 hrs because this what the steroids do to me.  (Why not blog?! )However we think the steroids helped last time so its hard to not take them.  The reason I'm sleeping in the recliner is that I have the sciatic pain back that shoots down my leg.  I have seen 2 chiropractors who couldn't help me.  Now the oncologist wants to do an MRI of my spine to see what's going on.  Likely there are tumors pressing on nerves.

I'm really looking forward to the Fall and hoping I'm feeling good for all the festivals and the weather.  Last year on our 7 year anniversary, September 23, i found out the cancer was back everywhere in my abdomen. Lets hope this 8 year mark is a little better.  We have a few weddings to go to and that's always exciting!

Back to sleep, I hope!  God bless everyone!  I hope you're sleeping!

I like this song

A dear Aunt sent this a few weeks back, I love the lyrics of the song and the cute claymation doesn't 
Hurt.  I'm trying to take in the good!!
http://www.rickhanson.net/resources-children/taking-good-claymation/

Chemo tomorrow...

I wanted to make sure I blogged just so everyone knows that I am getting treatment tomorrow.  I ended up with a nasty virus and I am finally starting to feel better so I am very reluctant to give up this foreign feeling of not being miserable only to start all over.  I am having a very hard day today with this so please pray for strength.

Hey thanks to all the Bills and Tinas!

So my 3 year old has taken to calling anyone and everyone Bill or Tina. He thinks he's pretty hilarious and frankly so do I.   Hence the title of this post.  I felt compelled to blog and thank every Bill and Tina who has been praying for me.  I had a decent day today, I even ate a sandwich!  I feel as though there is some light today and that's a lot to be thankful for!

half a day at a time

I have been so reluctant to blog because I haven't had the heart to sit here and tell you all what I have been experiencing and going through the past week, mentally and physicaly.  But alas you are my loyal followers and I know you're still there and you deserve an update!

I was violently ill this past week with vomiting and sweats and misery.  I was in bed for a week from the chemo and that was only from the pump drug not the main ingredient that used to make me really sick.  We aren't sure if all of my symptoms are from the chemo, the chemo and the cancer, or both.  I have a new tumor that feels very large that pushes on my diapgrham.  I am not sure if this is the root of my eating problems but I have a very hard time eating and keeping food down.  This has been going on for like a month, the eating problems.

I have a constant internal struggle about how much suffering is worth staying here on Earth for.  I love my children and my husband my family so dearly but the suffering is just too much sometimes and fogs my head and makes me feel torn between just wanted to go to heaven to be at peace FINALLY and to end the suffering that seems to be so constant for me.

As I tucked my daughter in last night she said, "mom do you think you'll be sick tomorrow?"  Please pray for a good day, positive energy, hope and light.  Please pray for my eating and my children and my family.

On the way to Boston

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

Night before kindergarten

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

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

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

The Dragonfly Story

The Dragonfly Story 

By Walter Dudley Cavert 

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

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

I need a pep talk

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

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

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

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

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

Every day is different

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

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

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

Vacation is over :(

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

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

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

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

another birthday

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

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

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


Me and my birthday buddy!

July 14 dr apt

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

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

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

side effects

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

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

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

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

Time to try something!

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

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

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

the waiting game

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

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

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

Humph

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

better chemo

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

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

chemo tomorrow

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