Tuesday scan and treatment

Tuesday will be such a long day for me, we need to leave before 7am to get up to Boston.  I have a scan and then treatment.  I won't get results of the scan until probably the 2nd as my dr is out of town.  I am not too concerned with results, if it shows a little growth I will be surprised although it is expected with this kind of treatment.

I continue to get severe cramps early afternoon every day from the pills I take for the treatment.  We haven't been able to find anything to relieve that yet.  I get my week off starting next wed and I look forward to that as I get pretty immediate relief after stopping them.  The rash has gone away although something appears to be starting up again but nothing severe like last time.

Trying to enjoy extra time with kids as they are on Christmas break this week.  Keeping a 3 year old boy entertained indoors can be pretty hard!

my full time job

I went to a work Christmas party last night.  I miss working to do a degree, I miss the social aspect and I really did love what I did, so I do miss that.  I love the company I worked for and all the friends I worked with.   I am grateful that I get to spend so much time with my kids though.  I feel like my new full time job is being sick, or should I say, getting better.

The first year I was out on long term disability and I would dread the phone call from the guy assigned to harass me to make sure that I was really still sick and needed to be out.  Now I'm on disability through the government and since my status is considered metastatic they do not harass me anymore, which is nice.

Some days I truly wonder where the time goes.  I do of course have two small ones to look after so that is where most of my time goes.  Even being in the hospital for treatment and being gone for 12 hours it seems to go by fast, I think there is like a hospital time warp or something.  Anyone else know what I'm talking about?

I day dream about getting cured and if I would ever want to work again.  I picture myself being super skinny and drinking only green drinks and being the weird lady that lives on the corner of Acorn and Carriage that juices all day and only eats raw vegetables.  I could start a blog about how I beat cancer and share all my juicing recipes...aaah maybe some day...

Then there's the days where I wonder if I'll be here in a year.  What dying is like and how I really don't think I can handle chemo again if/when it comes to that.  When I feel good and attend events like the Christmas party it is just so hard to believe the life I really live and the prognosis I fight daily.

But alas, these are the cards I was dealt and this is the job I do every day.  There is so much suffering in the world, and I don't have it as bad as some people.  I type these words nestled in my living room with my warm laptop heating my lap, sitting on a couch with heat in my home as it is FREEZING outside.  My christmas tree glistens in the corner of my eye along with my family snuggling on the couch watching Frosty the Snowman.  Doesn't sound so bad does it?

Anonymous

"Anonymous" is how a lot of your comments show up in my email if you don't log in to leave a comment.   It has become comforting to see it show up in my inbox.  I still love getting comments!  And so many people anonymously read my blog, and thats ok too!  Someone recently left an anonymous package at my door, love that too! :).   Also got an edible arrangement from an anonymous friend, yum!  how spoiled am I?!

But the reason of this post is actually to comment on some wonderful people that have been brought into my life recently.  I just think about how these people were in a way anonymous to me at one time and now I feel like they were brought into my life for a reason.  My new clinical trial nurse and my new palliative care Specialist.  For those that don't know, palliative care is kind of like a symptom management person who helps with side effects from everything, the cancer and the medicines, especially the trial drugs.  These two people spent a lot of time with me today and just warm my heart with their care, concern and devotion to making me feel good in so many ways.  I just feel really blessed with the team I have and wanted to share that I am in great hands and feel so lucky to have these people on this journey with me!

Well that Was good while it lasted

I am back in the chair with everything hurting from my leg to my side tumors.  I am on my off week from the pill and all I can think is that the pill was working.  It causes quite the rash though and nothing they've given me seems to be helping.  I feel like its finally getting a little better but I am supposed to start the pill today so it will only get worse.

Wish me luck today, I don't want to miss the treatment just because of a rash if its working but it's a pretty ugly rash!

Between the sheets

Now that I have your attention!  As you can see by the title of the post I am writing a romance novel in my spare time...Just kidding....the real reason for the title is that I am sleeping in a bed again and I just love the feeling of sleeping between sheets compared to my recliner with a blanket.  It's the little things right?!  The tumors on my sides aren't painful like they use to be and the fluid I had is gone, and the shooting pain down my leg is gone.  Lots of things to be thankful for, I want to say the drugs are working, we will see what the scan shows in a few weeks, but we all know what matters is how I feel and in that regard I'm on no pain meds and that's a great thing.

Since my mom and I didn't get to go on our vacation to Tucson we have decided to make the best of the week and stay at her friends little cottage in middletown.  Although we didn't have the greatest of starts to the week, we spent the entire day Monday in Boston at Mass General because they wanted to see me for my rash, so its a good thing we didn't go away.  They ended up giving me a steroid which I haven't noticed helping yet except that it seems to be helping my appetite.

We did get to spend yesterday doing some christmas shopping, and I had wanted to get the kids build-a-bears for christmas with my voice recorded in them and we accomplished that mission.  It's such a cute concept and I did the whole routine of getting their heart beat going and making  the biggest wish in the world to put inside the bear, we all know what the wish would be and it was a little hard not to get emotional in the build-a-bear workshop but I held it together.  Then I got to pick out the cutest outfits ever to accessorize them and spend way too much money!

The pills i'm on for the trial are causing the rash so thankfully this is my week off as of today from those.  So hopefully between the steroids and not being on the pills we can get that under control.  It is really painful on my face and of course makes me self conscious of what I look like.  It's pretty easy to conceal the back and chest in the winter.  They also told me to stay out of the sun so this rainy week in New England is actually better for me than the sunny week in Tucson I'm missing!  Everything was meant to be I guess.

Now the rash

I was warned I'd probably get a rash from the treatment.  It started on my nose and is spreading all over my face and chest and back.  I'm hoping if I call Monday I can get something to treat it.

I've decided not to travel to Tucson.  I am just too exhausted and sick for the trip.  I can postpone my tickets until when its even colder here, still something to look forward to.

A rough go of it

Where do I start?  I ended up going to the ER on Sunday for a bladder infection.  They put me on an antibiotic but unfortunately I seem to have a reaction to the pain meds for it, threw them up twice now so I just have to suffer through the pain.  I have had horrible tummy trouble which I found out today is all from the pill form of the treatment I'm on, very discouraging to me.  I was put on another antibiotic today because my infection is resistant to the first antibiotic as the symptoms started to worsen yesterday.  I was able to get treatment and I have been gone from home almost 12 hrs and am just now leaving Boston.

I am very discouraged by the side effects from the trial.  Also I have been warned my infection might be resistant to this next antibiotic And if I develop a fever they will have to admit me to give IV antibiotics and it will interfere with my trip to Tucson.  Lets pray this round works!