Archive for September, 2010

Update 9/17/10

September 17, 2010

I haven’t updated in a while–it’s just kind of a bummer to write about this stuff!!    But I know that several of you want to know what is going on with us.

I was accepted into the Clinical Trial/Study of a drug in phase 3 of its study.  This drug has shown some great results in Triple Negative metastatic breast cancer.  On Wednesday, September 8, I went to the Morrocroft Imaging Ctr (We’ll just call it the spa–it was so beautiful!)—to have 4 MRIs.  I was a little anxious–because even one MRI is enough for me.  They are SO loud and having to be still is stressful especially when your mind is going a little crazy anyway.  ( I was having these MRIs on my spine and pelvic bone because my recent PET scan had shown cancer in the lower back and right pelvic bone).  After 3 MRIs, they let me out to use the bathroom, and I ran into my mom in the hallway and she was crying (which is nothing new for any of us these days!!)—so I went back for the last MRI..and FINALLY finished and came out.  My mom said “do you want some good news?” I was like “what could be good news?” and she said that Jerel called while I was in the MRI to tell her that I had been accepted into the study and that we would begin 2 days later on Friday.  We were thrilled because we had been told there are some options, but it sure would be great to have THIS option!

So, I went to see Dr. Limentani on Friday the 10th.  He walked in and said we should go to Vegas–indicating our luck of getting into the program!  Of course, I believe that God wanted me in the program and he wanted me to start that week, and not the week before!  He gave us good news from my MRIs–that the cancer is small in the bones and NOT near my spine and definitely something this drug (if effective) could knock out.  Anyway—-we went straight to the Infusion Room and got started.  (the week before they had briefed me on all the drugs and all the side effects/procedures/etc).  Anyway, I’m on 2 chemo drugs plus the study drug.  I’m on a 3 week cycle.  2 weeks on (2 days each week), then the 3rd week off.

So, my first day of Chemo was Friday, September 10th.  It all went pretty smooth. I had few bumps in the road that weekend… but was able to go back on Monday for just the study drug…but ended up with a fever that day. Long story short (or longer?), by Tuesday, I had rebounded and was feeling back to me….even went to Panera.  Wednesday and Thursday were good days…felt pretty good.. took the kids to the library and out for ice cream on Thursday.  That was great to do something normal like that and good for the kids to have a mom that gets out and is active!!

So, I went back today for my “2nd week” of the first cycle…to get all 3 drugs.  But my white count was too low. I only got the study drug today and not the 2 chemos.  The 2 chemos are the blood-level-crashers!!  That is a bummer for me because obviously it is so early in the fight here to be having low blood counts.    So, I’ll go back on Monday to just get the study drug again…still have a week off and go back October 1 to start the 2nd cycle.

Next week, depending on how my blood levels do–I may begin to get some shots to boost my white blood count.

We did meet with Dr. L again today and he said we would do scans after the 2nd cycle (so mid-October) to see if my lymph nodes in my chest have decreased in size, stayed the same or grown.  If they have decreased or remained the same, then we’ll continue on this path. If they have grown, we’ll have to move on to something else.

SO…specific prayer requests:

1.  That God would use these 3 drugs to heal me of this cancer.  Pray for the scans to show smaller lymph nodes to indicate positive effectiveness of this study.

2.  That my blood count would improve enough to get these meds.  (and that i would stay infection-free in the meantime)

3.  Pray for Jerel. I know it’s hard for him to receive all the medical info, stay encouraged and pick up my slack at home.   Pray for my parents too–they help us a lot!! And for the kids–that they would be ok in all this!!

And THANK YOU to all the friends who have helped out with playdates, meals, lunches for the kids, etc.  We feel like we have such a wonderful “family of friends” around us.  We are so blessed!

On another note… we are doing pretty well.  As I type this, we’re watching National Treasure–and Jerel just made chocolate chip cookies for the kids.  We are able to stay somewhat normal–a little more laid back and less active stuff than normal–but that’s ok.  Nightime sleep is sometimes induced with Ambien (to stop my mind from going crazy!) or mindless Food Network TV!!

My sister is coming later this week…we always look forward to her visits.    She always brings some laughter and obnoxious noise (in a good way) into our house!!  The kids, I’m sure will begin mentioning “Target Shopping Sprees” soon. (She gives them all like a $10 gift card and they walk around Target)—I know it sounds incredibly spoiled..but it’s one of their traditions.  But last time she was here I told my kids NO ONE could mention it until she did.  That didn’t work out so well!

Well, I know I rambled in this post…but I wanted to give you some indication of how I was doing and the status of everything.  Thanks for reading and caring!

Love,

Susan

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First Day of School August 2010

September 11, 2010

Bailey and Christopher’s first day of school.  5th and 3rd grade!!

Because kindergarten has a staggered entry, Luke’s first day was a few days later.  So, we took the picture all over again, and another one of us all at the busstop!

Some of you have asked….

September 8, 2010

GREAT NEWS!  I was selected for the Clinical Trial/Study today and will begin chemo + exp. drug this Friday!!

Some of you (local friends) have asked how you can help us through this chemo treatment.  My friend, Diana, has once again offered to help us in organizing food.

If you would like to help (and really no pressure at all–this is just an easy way for people who have already asked…..)

email     dianahosse@gmail.com

and she can get you signed up for an online sign-up thing where you can look at the schedule and see a time that works for you.

Thanks so much…

Susan

Encouragement…

September 7, 2010

A friend sent me a message on facebook today.  It was so encouraging to me…and I thought , we should all do this more often–just send encouraging words to people.  It takes like two minutes–and with email and facebook, it couldn’t me easier!  So, if you’re reading this today–take a couple of minutes to encourage someone in your life today.  It really made my day!!

Part of her message:

Hey there! Been thinking about you today. I woke up this am remembering your post from the other day…that you missed being normal…made me laugh, and here is why.
My mom suffers from depression off and on. She has seen several psychologists…none of which she ever really liked till one day she went to see this new guy and when she got home she called me. She said she was talking to him and she told him she just wanted to be normal. He looked her straight in the eye and said” normal is the setting on the washing machine”! Funny!So I was thinking, you know how last year Bailey told you, your gift was making other people feel good, doing special things for them? Well, I know normal would be fabulous right now, and I know you don’t want this disease to define you, but I know all of us around you would say that the definition of this disease is the strength and courage you show us everyday. I am so proud to know you. I know no one knows the right thing to say…just thought you’d appreciate my washing machine story!
Love you dear one, and I believe that this thursday will be good news!

On another note–I have a ton of people praying for Thursday–that I am selected for this Clinical Trial/Study. Will you join us in prayer?

Love,

Susan

9/01/10

September 1, 2010

I heard today that I was not selected by the study this week.  (They did the lottery a day early this week, not sure why).   I have an appointment with the oncologist on Friday to discuss PET scan that I had today and to determine next steps.  Please continue to pray for me…. I’m a little discouraged b/c I really thought I would be starting chemo this Friday and getting on with this treatment!!