Tuesday, February 02, 2010

People make me crabby

So yesterday was a "big day" for me... post IL-2 scan time.  These scans were scheduled back in December when I was on my way in to the hospital for round 2, cycle 2.  Just to recap, these are the tests they want to do:

 - MRI of brain - just checking to make sure there are no mets because if there are, I can't continue IL-2
 - CT scan of chest.  Have not had chest mets to date, keeping watch
 - CT of abdomen and pelvis - they can do these all at one time.  Since the results of the abdominal CTs I had in Cleveland in July vs Columbus in Sept were interpreted differently, that leads to
 - MRI of abdomen.  The liver mets are what caused all the flurry in Sept - Cleveland saw them on CT, Columbus didn't, but then did when they did MRI.  Since I have metastasis by the ovary, they like to MRI the pelvis too.

My IL-2 onc strongly prefers (requires) that the imaging be done at his facility to control variables of machine and interpreter.  OK, not optimal for the patient who lives 2-3 hours away but understandable and do-able.

Back in November, I was scheduled to spend 3 days in Columbus having these tests.  The reason given by the radiology folks was that with one kidney, I couldn't have more than one dose of IV contrast per day.  We want to protect that kidney, so okay.  I didn't like that schedule but planned around it.  The day before these scans, my IL-2 doc's office called to ask why I've spread my tests over 3 days; I told them that radiology insisted on that schedule.  They explained to me that I could be hydrated to flush my kidney so that I can in fact have more contrast in one day.  OK, didn't know that, and apparently neither did the radiology scheduler OR the appointment person at the IL-2 office.  Doc decides that instead I will have a pelvic CT so they can shave a day of travel for me .  Good.

Now back to December.  Onc decided that for Feb scans, I could have the brain MRI in Cleveland, since they don't need to compare that film to previous films.  Good news!  The rest of my tests were scheduled for one day, Feb 1. CTs at 4:20 and MRIs at 5:00.  So Jim and I made arrangements for my sister to take care of the girls after school, and headed down to Columbus well in time.  

When I arrived, the tech briought me back to do a finger stick to test my creatinine.  They do this every time and I like it - again they are making sure to protect my kidney.  She told me that there was a note in my chart to be sure to do this since I left the hospital with a creatinine level that was somewhat elevated. back in December.  Well, it's still elevated.  So she had to call the doc's office to see what they want to do.  It  was decided that I would not have IV contrast for the CT scans.  (I still got the "joy" of drinking my very favorite "berry smoothies" but oh well)  I did still need contrast for the MRIs so they needed to arrange to have me hydrated by IV after the test.  Due to the lateness of the day, they couldn't get me in to be hydrated at the chemo station there at the same facility as the imaging office.  Instead, I would need to go to the hospital and to an immediate care unit where they could do it.  OK, again, not how we planned our day, but we dealt with it... we had planned to have dinner with our Columbus friends and had to scrap this, but my kidney comes first.

CT went fine.  Then I was brought back for the MRIs.  The tech told me that I could only have the abdominal one - again because of the extra dose of contrast.  She said they wiouldcall my onc's office about it in the morning and that I should check in with them too.  Maybe you can come in Sunday to have the MRI, she suggests?  I'm thinking, what's the point... if the abdominal MRI shows bad results, it's moot.  Or, if the pelvic CT shows bad results, it's moot.  But no point in discussing this with her.  I got through the MRI... sans Xanax these days though I always feel a wave of panic upon being slid into the tube... keeping my eyes closed the ENTIRE TIME is the trick for me.

Jim and I then headed to the hospital, where a super-nice nurse got me hooked up.  Fortunately, the MRI techs had accessed my port, so she didn't have to - I still had the needles inserted so I was good to go.  The MRI folks led me to believe I might be at the hospital for hours.  No way, the nurse cheerfully informed me; your order is for a half liter over an hour, then you're out of here.  All right, better news than I 'd had in the past several hours!  She brought Jim and me each a bottle of water to drink while we waited ,and I spent the time playing with my DS... CrossWords and other word games.  Friendly nurse came back to check once or twice and at the end, saw how little was left in the IV bag.  She told me to take a big swig from my water bottle as that would more than compensate for the remnants of IV bag, so she could disconnect it!  I like the way she thinks!  

My lovely husband drove our weary selves home, with a stop at a Subway along the way where the girls at the counter were not thrilled to see sit-down customers 15 min before close, but okay with it.  Less okay after I dropped my full drink over the side of the table... but luckily she was already mopping so the equipment was right there.  We picked up the kids, got home and all fell into bed.

I was feeling so wasted this morning that I let my team know I would be working from home, to save me from having to make my long commute.  I called the onc's office and left a message to talk to his NP.  She called back and I quickly learned that radiology had not talked to them.  She was upset that they canceled the pelvic MRI without consulting my doc or her.  She apologized for the miscommunication and told me that she would talk to the doc then call me back.

I heard back from her around mid-afternoon.  Doc was unhappy too but thinks it will be okay to use the tests I did have.  She tells me that if I do need the pelvic MRI that I might have to have it in Cleveland "which wouldn't be optimal".  I thought, WHEN???  I asked her when we'd have results of the Monday scans.  Not until Thursday, so she plans to call me late in the day on Thursday.   

So, here is what could happen:

1 - the tests I did have show clearly that the IL-2 is working, so I go back to OSU on Monday 2/8 for round three of IL-2.

2 - the tests show clearly that the IL-2 is NOT working so no more IL-2.  Whether I would still be expected to see the onc in Columbus on 2/8 is an unanswered question, but I don't see the point if this is where we are.

3 - the tests are inconclusive without the pelvic MRI.  I can't imagine I'd be able to get that scheduled, and results down to them, by Monday to start round 3, but who knows what they are thinking.

As I think about all of this, I can feel my heart rate increase and the stress build up, so that I have to focus on shaking it off to calm down.  I absolutely HATE not having a clear plan, not knowing what is going to happen until the last moment.  And that is what this feels like.

Assuming I WILL be meeting with the doc next week, I WILL make a suggestion that the clinical onc folks, the appt folks and the radiology folks all need to GET ON THE SAME PAGE.  No patient needs this kind of stress, and I can tell you that I DEFINITELY don't.

Next update hopefully Thursday, with hopefully some good news. 


Anonymous said...

OMG I feel your pain! All I can do is let you know that I feel very deeply for you, and am sending you all the strongest PVs I can muster from the Universe.

Amanda (EXPM)

Michelle Bogus said...

Hang in there Liz and try to breathe. I will be praying for you from now til I see the happy post that the IL-2 is working and you are going back in for the next round. (((((HUGS)))))

Stefanie said...

I'm wholeheartedly cheering for option #1!! I will keep praying that those are the results you hear from the docs tomorrow. Thanks for keeping us in the loop.

Sarah said...

I'm sorry "the system" is giving you unnecessary added stress. I'm thinking good thoughts for you!

Bec said...

*Hugs* I am sorry a complex medical situation has to be made extra miserable by disorganization and such. Hang in there. I always admire your strength and attitude -- even when you don't feel all that strong or positive.

Sherry S. said...

You should e-mail this post to everyone involved in your scheduling snafus so they can feel your aggravation and frustration. My heart goes out to you, and I'm praying for measurably good results so you can go on to
round 3.

Love ya!