savoy066

I was able to get my pill part of the treatment yesterday.  It was a long day just to get blood work done and get some pills!  We made it home safely from Boston in the wintery mix, which thankfully turned to rain.  My kids are pretty dissapointed that we don't have any snow here. I am so thankful that I am on this trial.  I have accumulated more fluid and it is really uncomfortable and painful.  I don't know how long it will take before I have enough to get drained, but lets just pray that these drugs help shrink the tumors so that the fluid stops accumulating. I am so thankful for all my friends and family who have been so supportive of me during the past 2+ years.  I am so thankful for my husband who stands by my side through all of my suffering, as well as my mother.  I am so thankful for my children.  A friend told me the other day that I smile when they come in the room no matter how miserable I am.  I don't think I ever noticed that, b...

I am supposed to call my nurse tomorrow and report on fever and everything.  I haven't had a fever for a few days and I am feeling a little better.  I am very nauseas all the time so that has been a struggle but I was able to go for a walk today and get out in the sun.  The plan is to go Wednesday to get treated.  They will only give me the pill.  The IV treatment will stay on schedule, and I will go the following week for that.  That works out for me since my mom and I have tickets to go home in December and hopefully I'll be well enough to make that trip.  Not altering my IV schedule allows us to keep our tickets as they are.  It's only 6 days but will be worth it for that warm sunshine!

I am still going up to Boston tomorrow, we will see what they say.  My temp has been staying down near 101 which is better than close to 103.  My lymph nodes are still super swollen on my neck and my throat still hurts. Earlier today my 3 year old son, Drew, brought me one of my Alex and Ani bracelets randomly and said I want you to wear this and it is the one that says "hope".  Still trying to have Hope!

I have had a sore throat for about a week and ended up with a high fever past few days.  I was able to get In to see my primary and get on antibiotics.  I am not sure how this effects the trial, I might not be able to get treatment this week, I will find out.  Bummer about that but really hope this antibiotic will help me feel better!

The wedding was so much fun!  I got to dance and hang out with family and I actually felt okay.  It was a beautiful ceremony and reception right down the street from us at the Glen so that was super convenient. Here are some pictures from the event!                                                             Me and Bryan                                                           Me and Rachael (my c...

I have a friend who comes over all the time and gives me pedicures and foot rubs and I don't have a picture of that, but I had a few other friends come over today and Cady, my friend from work gave me a foot scrub and rub!  My friend Dawn took a picture so I thought I'd share.  It is always nice to have a good visit with friends to boost my spirits!

I had a very long day!  It is 5:00 and we are leaving the hospital just in time for rush hour.  The whole trial process is so interesting.  Blood work is done first and then the dr visit.  Then it takes them 2 hrs to mix the drug, so lots of waiting.  I get multiple EKGs and lots of blood pressure readings throughout the visit.  I will not get my oral pills for another 2 weeks.  The nurse told me that I really shouldn't get any side effects from the drug I got today, although some people have flu like symptoms. I actually got a little foot massage today and accupuncture so that was kind of cool.  I like mass general so much more than Dana farber although it seems like when you are in a trial you get different specialized treatment than when you are just getting chemo. I am exhausted and have a headache but anxious to get home and see my kids.  Thanks for all the messages and prayers today.  They were much needed for my head and my heart....

I have felt pretty awful the last couple of days.  I've been sleeping in the recliner, my tumors are so painful I can't even lay on my sides for a second.  I have some fluid which causes horrible cramping in my back and my abdomen.  I am nauseas also I believe from the fluid.  The suffering is so hard, it makes me think a lot about death because I have to believe that there is no suffering in heaven. This trial has to work, please continue to pray for me.  One of my cousins is getting married Sunday and I so badly want to attend the wedding and feel good.  I  want to be able to eat and not feel sick, i want to visit with my family, i want to dance!  i just want to be normal again.  I am so scared and nervous about the trial because I feel like its my last hope right now.  Like my brother always says I just have to stay alive until there is a cure. Heading to Boston now, if I feel ok I will try to update you all later!