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.