Planning

So yesterday was the grand planning appointment.  Really, it was great for me.  Sat and read my book, chatted with the dosimetrist and student, got changed into a lovely hospital gown, then I just layed around for about a half an hour, got changed and went home.  That's the way all appointments should be I think!  The other stuff that went on didn't concern me :)  Oh, they made a bunch of pen marks on me, lined me up with laser beams (Johnny and Jesse were impressed!), and I had a CT scan.  They left some "X marks the spot" marks on me for future use, but that's about it.

The medical staff now has their work.  They have to make that model of me, and figure out how to zap those cancer cells that might be hiding, without zapping too much of the rest of me.  You know, the parts I might need later.  Apparently the rest of this week they use the CT scan to map out where the radiation beams will go.  Next week they will call me for a "simulation" appointment, or a dry run.  There will be no radiation, they just look to see how well they mapped things out.  If they did well, the next day I'll get the real thing.  If not, well I guess they get more homework, and I'll come back another day. 

Once appointments start, it will be more of the same.  Come in, get changed, lie around, get changed again, go home.  Oh, I'll be catching a few "rays" while I'm lying around. . . . . maybe I can catch a quick nap too.  Maybe that's not such a bad deal. . . . . a daily nap!

Decisions, decisions

So I went on and cancelled my simulation appointment for today.  If anyone is counting, that is the 2nd one I cancelled.  The positive side is that I cancelled it so I could have another consultation with the doctor.  John went with me, and we had a long sit down discussion about WHY I need the radiation.  I was impressed that though they told me the doctor's schedule for today was "packed", he didn't seem in any hurry and took his time with us.  He even read the research studies I had printed out, and explained how the results applied to me. 

Without making this a long story, the result is that I will be having radiation--and all that he suggested.  Now that I understand all the 'why's' I'm feeling much more confident.  The doctor was very kind, and even mentioned that I'm always free to pick and choose which treatment I think I want to take.  He said it was their goal for me to be confident with the treatment, and they would do all they can to help me be comfortable through it.  Maybe he is just tired of me cancelling appointments :) 

So once again, I have a simulation scheduled for Monday.  I'm feeling good and have no plans to cancel it.  Wondering if they have me circled in the book and a note "will probably cancel"  :) 

Indecision

So we were going to go for that 2nd opinion. . . . . . after much research and talking to many people and a few doctors, I decided not to get the 2nd opinion, just to do the radiation.  Made the appointment for my "simulation" and I felt good about it.  Then today, a new study came out that confirmed some of my fears, and gave me enough doubts that I'm thinking of cancelling the appointment. . . . for the 2nd time.  They are just going to love me at that office! 

The bottom line is that I really need to be convinced before I go through with this, and right now I'm not.  I'm hoping and praying that the doc will have patience with me (something I didn't really see before), and will be willing to explain things without being biased.  I heard this week that if the only tool you have is a hammer, everything looks like a nail.  I'm feeling like a nail right about now. 

The good news from this week is that Emily got her medication--finally!  There was a big insurance mix up on the day, but the doc's office worked really hard and got it taken care of.  Truthfully, they really went out of their way.  They not only called and got it straightened out with insurance, but they then sent someone to DRIVE to another office to pick up the medication, and bring it back! 

The infusion was uneventful, and Emily hasn't had many side effects to speak of.  Next one is in 2 weeks, and that will be when she can wean off her other medication--oh happy day!

Updates on waiting

We got the call last week, insurance approved another visit to City of Hope, for a 2nd opinion with one of their radiation oncologists.  The hard part is all the paperwork/records that we need to get to them, before I can schedule the visit.  John is now in charge of all that.  :) 

Much more fun to talk about: Emily's update.  We saw her GI doctor on Wednesday and he gave us some names and numbers to call, to get the ball rolling--since evidentally the ball stopped.  Between Wednesday and Friday, everything was accomplished! 

The long version. . . . . the insurance approved her to get her medicine at an infusion center in Orlando. . . . . . . Florida!  wahoo, pack your suitcases, let's go on a vacation!  Ha.  It was a mistake, no one is sending us on vacation anywhere.  The nurse called me back (at the fair no less) to let me know where Emily is to get her meds.  How ironic. . . . she will be getting them at the same place I got my chemo.  Tuesday she has an appointment with my oncologist (me too) and afterwards will get her infusion. 

After 12 weeks of coming in every Tuesday, I had ONE Tuesday off, and now we are back--for Emily.  Well, the nurses asked about my kids a lot, now they can meet and treat one.  Seeing my doc is a formality, so she can actually get her meds there without being a hematology/oncology patient.  In some ways, I am so relieved.  I know the nurses there, they are very caring and kind, and this will be so reassuring for Emily.  One less thing to worry about!

Field trip!

First Field Trip of the year!  

This was our ELEVENTH year to go on the fair field trip.  Obviously, only a couple of my kids have made all those trips.  

 It's one of my very most favorite field trips, and one of the few that we've been on every year.  The kids got to try out all sorts of exhibits.  I think this is one of my most favorite pictures of the day. 

 Jesse has loved petting the animals every year.  Almost as much as Hannah did/does. 

This year Johnny and Jesse had to stick their heads through EVERY one of these silly photo-op thingies.  I have SO many pictures of their heads and some kind of funny background.  Well most of them.  Johnny keeps reminding me that we didn't do the dog one.  I was hot and grouchy by then and tired of stopping every 20 feet to take ANOTHER picture!  Shame on me. 

Overall we had a great day.  I could have used a nap in the middle of the day, and I was dog tired by the end of the day, but mostly, it was really fun.  Actually, I'm still tired from it today, but still glad we went! 

Jumping back into Life!

So now that chemo is over, I've found myself trying to jump right back into life as it moves along so quickly.  I'm finding that I'm still recovering, and I don't move as fast as life goes often!  Truthfully, my labs are not yet back to normal, so I am trying to take it easy and not do as much. 

Today was my first Tuesday since JUNE with no chemo.  Very strange, but kind of nice.  I did miss the nurses--almost called them just to say hi :) 

My sister sent me a link to a song today.  For some reason songs and music touch me in a way that other things don't.  You should have seen me boo hooing at church this week. . . I digress.  This song has such perfect words for my situation right now.  So many times this year I've felt that the situations I was in, were so very dark and sad.  Sometimes I wasn't able to see beyond the dark, to the light. 

One of the things the writer of this song said, was that loss does not have the final say.  What a huge encouragement.  In so many situations of loss, it is very difficult to see beyond that loss, to what is in the future.  The loss completely overwhelms us.  The hope we have in Jesus gives us certainty that loss does NOT have the final say, that there IS hope. 

The other thing that touched me about the song  is the title that is repeated throughout the song.  "Nothing is Wasted" what an encouragement.  Sometimes I forget how powerful God is.  He can redeem the situation, and completely change it.  Beyond that, sometimes He is at work in a way we cannot and may not see.  Often I've felt that this year has been a waste.  I've been consumed by all that cancer brings: treatments, appointments, surgery, tests. . . . not to mention the anxiety and fear that has stolen my time and energy.  To be reminded that NOTHING is truly wasted: God can redeem the situation. 

thanks for sending that song Barbara :)


Nothing Is Wasted


(Jason Gray / Jason Ingram / Doug McKelvey)



The hurt that broke your heart

And left you trembling in the dark

Feeling lost and alone

Will tell you hope’s a lie

But what if every tear you cry

Will seed the ground where joy will grow



And nothing is wasted

Nothing is wasted

In the hands of our Redeemer

Nothing is wasted



It’s from the deepest wounds

That beauty finds a place to bloom

And you will see before the end

That every broken piece is

Gathered in the heart of Jesus

And what’s lost will be found again



And nothing is wasted

Nothing is wasted

In the hands of our Redeemer

Nothing is wasted



From the ruins

From the ashes

Beauty will rise

From the wreckage

From the darkness

Glory will shine



http://www.rabbitroom.com/2011/09/track-8-nothing-is-wasted/

More waiting

So much of this year has been waiting!!  We are in a holding pattern once again. 

After much thought and prayer, the radiation, how and why it is to be done, is just not sitting well with me.  Wednesday I called the insurance to see if I can have a 2nd opinion on the radiation.  I also e-mailed the doctor I saw at City of Hope back in February.  He said he'd be happy to see me, and evaluate my case.  So, more waiting.  Wait for insurance to approve the visit, then I have to set about collecting records and other bits of info that City of Hope will want, in order to evaluate me.  Please pray that things go as smoothly and quickly as possible!

Another thing we are waiting on. . . . Emily's medicine.  So very frustrating!  We saw her GI doc 3 weeks ago today.  She has a follow up next Wednesday, and to date, we have made no progress!!  She was to have had 1 or 2 doses of her new medicine BEFORE this return visit on Wednesday, and the meds need to be given 2 weeks apart.  I called last week to talk to them, and it appears the ball got dropped somewhere.  For now, we continue to wait for our medical group to approve the medicine she is supposed to already be on.  Called again yesterday to see if there was any update, and due to the heat and power being out, the office was closed. 

If patience builds character, Emily and I should be wonderful people soon :)