Saturday, February 27, 2010

Winter... blah...

January and February seem to be making up for the mild weather we had early in the winter season.  We've had over a foot of snow here in the past day or two, which is far less than other areas of the US have gotten but is still no fun.  And our snow blower is on the fritz, which doesn't help.  Well actually, our snow blower decided to find a copy of Financial Times that the delivery person tossed haphazardly into our driveway, and got covered with snow before we picked it up.  So now this stupid paper is jammed between one of the blower blades and the wall of the blower.  Jim has been sawing at it with a micro blade and gotten some of the paper freed, but not enough...  Stupid free subscription...  On the other hand, while working in the garage on the blower, Jim organized a bunch of other stuff and really made a big difference.  Our garage is jammed full of stuff, for lack of a better word, and so our cars reside outside.  But maybe not forever; he has made some good progress.  We were blessed with angels who started the good work for us while we were in Columbus in December for my treatment.  One of the things blocking our path in the garage was a new set of attic stairs that had been purchased but not installed.  Two of Jim's brothers and his nephew came over and installed the new stairs, without us knowing about it until we got home.  So not only did a needed job get done, but we gained back some garage real estate which enabled Jim to work on some other stuff.  In general I feel like our house is a big chinese puzzle - any time we want to work on getting rid of/organizing stuff in one place, we find that the space it should go to is also full.  So this feels like quite the breakthrough.

I hope to keep the energy going inside, myself.  My energy level seems to have finally increased to the point where I am feeling like myself again.  Now to translate that energy into action at home...

One of my goals for this year has been to get back to walking regularly.  On Thursday of this week I did my first full 30 minute walk since coming back to work from my medical leave. 

I had been walking with coworkers fairly regularly during the week , but then spending the autumn having to be out of work and have lots of yucky chemicals poured into my body messed all of that up.  I have been wanting to get back into walking; I want to do regular exercise.  Plus, as part of a rebate program at my employer, I signed up for a 'coordinated care' program for hypertension.  I talk to a nurse monthly; I am supposed to take my blood pressure daily, eat a low-salt diet, and get 30 min of exercise 3-5x a week.  If I stay compliant with the program they will reimburse me for my blood pressure medication copays later on.  I really signed up though to push myself to exercise, and because if I stay compliant with my care program and I go have an annual physical this year, at the end of the year they will refund the difference in our health plan premium between the 2009 and 2010 rate.  That is about $200; would be nice to have, though frankly, our health plan has spent so much on me in the past few years that I think they are entitled to keep that money.

Anyhow, I've been back to work for 6 weeks now.  I've walked a few times during my lunch time, but didn't have the stamina to do more than 20 min or so.  But in the past week or so I have felt my energy level increase quite a bit.  Every day this week I planned walking time in my schedule and every day either something got added to my schedule or I blew it off because I was "too busy".  On Thursday, I told myself I had to do it!  As I was lacing my walking shoes, one of my officemates popped her head into my cube to ask  a question, and offered to walk with me.  That turned out great - with the distraction of company and good conversation, I was able to last a full half hour.  Sadly, I walked exactly 1 mile in that half hour... so not too swift, but that is okay... I did it.  I just need to keep doing it.  It remains my goal to walk the 5K when Race for the Cure comes to Cleveland this fall; I still have plenty of time to build up to walking 3 miles comfortably.  Rebecca wants to walk it with me, so once the weather is better we will start to train at home.  I know Carly will want to do it too, but I don't think she can make it that far and there is no way I am either pushing a stroller or pulling a wagon containing a then almost 5-year-old for 3 miles!  So she will just have to hang with Grandma or whoever we know down there - I'm sure we will have company among our family and friends for the event.

I have recommitted to using the stairs in my building at work more, too.  I park in the basement garage which is four floors below my office.   Last summer I worked up to climbing all four flights each morning...
it sucked, but was a good workout.  (As long as nobody in my office needed to converse with me for the first several minutes after I got to the top of the stairs!)  When I learned last July that I had multiple metastases, I gave up and quit doing the stairs in despair.  The IL-2 really zapped my stamina; throughout the time of my treatment I gauged my energy level by how difficult it felt to go up the flight of stairs in my house.  Since I feel more energetic lately, last week I started getting off the elevator a floor early and taking the last flight of stairs to my floor.  This next week I will do two flights... once that feels a bit easier I'll have to start climbing all four flights - it would look pretty stupid to take the elevator up one floor!  Our wellness folks at work have a little spreadsheet program on our intranet where we can log our stairs taken each day.  The program keeps track of my total stairs (up only) and as I get to certain totals, I get a little notice that I have reached the equivalent of the top of some landmark.  I have reached the top of the Empire State Building as of this week... next up is the CN tower.  Last year I wanted to make it all the way to the summit of Mt Everest so that is my goal again this year.

I have to try to get these bits of exercise in where I can; it's so hard to have time to work out these days.  Most week days, I am gone from the house for 11 hours.  In my waking time at home, there are so many things that need to be done that I find it hard to even imagine fitting in exercise time.  Through my employer I could join Curves for free, and there is a Curves around the corner from my house, but they aren't open either early enough or late enough for me to fit in a workout before or after work.  Oh dear Clinic, please move forward with a formal work from home policy!  If I didn't have to go into the office 5 days a week, some of the time I would save could be used for working out - wouldn't that be nice?  (Not to mention the money I would save on gas; it would be a pay raise of sorts)  I have been lucky to have worked for supervisors who have allowed informal work-from-home days but something more official would be really nice.  Moving closer to my workplace is not a consideration; we really like where we live and we like being near most of our family, both for general visiting and for childcare coverage.  Jim got a tip on a possible job, which unfortunately is even farther from our house than where I work.  A job is a job, sure, but being on the road for so long each day is really not conducive to a good quality of life.  Of course right now having a job at all would be a good thing... he keeps sending in resumes and completing applications, and has gotten a few interviews, but not been successful.  He is officially unemployed now, waiting for unemployment compensation to kick in, and still looking.  Bleah.

Fortunately the girls have been dealing with all of our changes pretty well.  Both are enjoying school; thanks to the generosity of the owner of Carly's preschool/day care, we are able to continue to send her there as they are waiving her tuition while Jim is looking for work.  Thank goodness for that, not just because being home with Daddy all day would drive both Daddy and daughter insane.  Carly is getting closer to being a reader; suddenly letters make more sense to her and she loves to fill pages with words that we spell for her and she transcribes.  Rebecca is really enjoying first grade; doing really well and trying hard.  One of her friends recently called here to talk to her and left the cutest message on the answering machine.  They have had a few conversations on the phone, which cracks me up since they are in the same class at school and both go to after-school together, so it's not like they don't see much of each other.When her friend (E) calls, Rebecca  carries the phone around with her as she talks, and Carly trails behind.  E has a sister in Carly's preschool class, so Carly wants to talk to her as well.  Unfortunately Carly hasn't mastered the art of phone conversation yet; as her grandma well knows... whenever C gets on the phone with Grandma she talks about things she is looking at, which of course Grandma can't see through the phone.  It makes for a confusing conversation!

Monday, February 08, 2010

Some more IL-2 prayers please

A fellow warrior, Chris Battle, just started IL-2 today at Duke.  You can read his story here - - and you should; he has a good sense of humor.  Let's send some PVs for a great, that is complete, response for him!

The next chapter of the story

When I left you, dear readers, I was busy crabbing about the miscommunications surrounding my MRIs.  Ugh.  A lot of that emotion was being driven by fear, mainly fear of the unknown.  I did make it through the week, though I kept wondering, am I going to Columbus?  Am I not?  What is next??  On Thursday I carried my cellphone everywhere I went so as not to miss a call from them.  I got home a bit later than normal and discovered that the NP left a message on our answering machine at 6pm.  ARGH... the curse of having more than one phone number listed in my record!!!

On the message the NP told me that everything remained stable from my November scans.  So, again, nothing new, nothing grew.  She said that Dr. O had not yet read the reports so she would be talking to him on Friday, and instructed me to call back on Friday afternoon.  Upon hearing this, I burst into tears... more waiting!  Jim came over to comfort me.  He had heard the message when she left it and he was reminding me that "stable" equals "good news".  Of course he was right, but at that moment all I could feel was the stress of still not knowing what was going to happen next.  At that point (Thursday night) we hadn't done any of the things that need to be done if we are going to be away for several days.  The list includes: getting laundry done so we can pack the girls' things for staying at Grandma's and packing our own things; stopping mail service; making a reservation at the dog kennel; etc. etc. etc.  Throughout the evening I collected myself and did see the good news in the message.  Of course I was a bit disappointed that there was no shrinkage; I had hoped that with all the immunologic symptoms I've been experiencing (low thyroid, joint pain) that shrinkage would follow.  It's possible that these lesions are just dead or dying tissue though, so that is what I am visualizing and hoping for at this point.

On Friday I called Dr. O's office to let them know to call me on my cell phone, so I wouldn't miss a call, and that is where the NP called me at midday.  She told me that Dr. O didn't think I would benefit from any more IL-2 at this point.  As we talked, she was very apologetic, but I reassured her that I understood and agreed.  If the scans had shown any positive change, I would have gladly gone back for more treatment, but I just couldn't imagine putting myself through it again if I've remained stable all this time, especially given the toxicity of the stuff.  She explained that they would send the results up to Dr. Rini here and that Dr. O would call him to discuss. 

So, that chapter is closed.  I had already emailed Dr. R and HIS NP, Shari, to ask if by chance they had received any of my results yet, before I even heard back from OSU.  They had not, though Shari confirmed that my brain MRI was normal.  (so there, I still haven't lost ALL of my marbles yet)  Dr. R was traveling but was gracious enough to email back and forth with me a bit.  According to him, "I would propose no treatment until your disease worsens. Often pts can have many months of stability after IL2. We should see you in 3 months with CT scan."  I am hopefull that the word "until" becomes "unless" over time.  But at any rate, this buys me some time... time to continue healing from the IL-2.  Time to work on projects at home that I have had mental but not physical energy for.  Time to spend with the family and with friends!  Time to refocus my energy at work and work on some things I have wanted to accomplish.

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.