Results From a LONG Day!

Hi Again, Friends,

Just one day after Mom and I traveled back and forth on the Bay Bridge, that cable broke and backed up/suspended traffic.  Thank you, Lord, for Your timing!

We hit the road Monday morning at 6:45 and I didn't drive back into my garage until 8:10 pm.  It was a LONG day at UCSF.  I'll do my best to walk you through the day and share what we found out.

I started on the hill at Parnassus with a Pulmonary Function Test.  I had to do a number of different breathing functions that seemed to truly stretch the limits of my lungs.  The technicians that worked with me, Tyler and Kelly, were very patient as we worked around the cough trying to get three good averages from each test.  Sometimes it took up to seven tries to get those three good ones.  I also had a blood draw from an artery near my wrist to see what my blood gas level is.  The directions were to not move and to breath, which was a bit hard considering they couldn't get it on the first try, so had to move the needle around to try to find it.  They got it on the second try.  By the time I was done, I was kind of exhausted, and that was only the first appointment!

Next was the injection for the bone scan, which involved an IV.  The tech, Collette (and yes, she had a French accent!), was kind enough to leave the IV in so I wouldn't need another one for the CT scans.  However, when I made it to the appointment for the scans, my creatinine level was borderline again, so they wouldn't let me have the contrast dye, which meant the IV came out as it was not needed.  I don't remember the name of the man who took the scans, but he was so patient with me as I had to lie flat on my back and not move-quite a feat given I haven't been flat on my back for a couple of weeks due to the cough, and when I do lie flat, I cough, which I couldn't do during the scan!  So we worked out a little system where I would cough until whatever was trying to come up did, then he would start the scan, I would hold my breath for the necessary part, then start over again.  All in all, he said the scans came out very clear even without the dye.

I had to lie flat on my back for the bone scan, also, with the box that took the pictures literally nose to nose with me.  I could cough, but couldn't cover it with my hands or turn my head.  The scan took about 20 minutes.  As it started, I could feel myself begin to hyperventilate as I tried not to cough.  I had put a cough drop in, but it wasn't helping, so I frantically began to recite scripture and sing worship songs in my head...and God met me there.  My breathing began to regulate, I calmed down, and the scan made it all the way to my feet before I began to cough.  The technician quickly had the doctor check the scan, declared it great, and I was done!

By now we were late for my appointment with the good doctor, so we headed to Mt. Zion, not knowing what to expect.  The 'what' was a LONG wait.  My appointment was for 2:30, we got there around 3:15, and saw the doctor  and the NP two and a half hours later, around 5:45.  In between, I thought I would go crazy.  We looked at every page of every magazine in the waiting rooms, none of which are very current, shared some Jelly Bellies my mom found in the bottom of her bag from a trip to the factory some two years ago!, memorized the medical forms lining the wall, stared into space, and fell just short of taking a nap.  I did get to meet the nurse, Jay, who I talk to on the phone on a regular basis.  That was a nice moment.  When the NP and then the doctor finally walked in, we asked if we should order out for dinner!

The good thing about  it being so late is that all of the results for the tests were available excepting the bone scan.  The Pulmonary Function Test showed that I do not have asthma (go figure!), so I have suspended the use of one of the inhalers and only use the albuterol if I really need it.  There is one result that caused a bit of concern, and it is the one thing I didn't write down, so I will have to check with the doctor to be completely sure I got this right, but it was something to do with how well oxygen is absorbed into the blood from my lungs.  I am at 64 % of normal in this one (if I got this right), and normal is anything above 80%.  What this means for me is unsure at the moment.

I had a CT scan of the brain this time (Matt actually had the audacity to ask me if it meant I have a brain-which, YES, Matt, I do!), and it showed nothing abnormal-so there!  The chest scan showed that the nodule that has shown growth before showed about the same amount of growth once again.  It also showed what they think might be a good part of the cause of this dreaded cough.  I have a lymphangitic growth in my lung, which has been there before, and unlike the nodule, which has defined edges, this does not, appearing as if it creeps or spreads as it grows.  The CT of the abdomen showed a small mass in the soft tissue near my colon, which has been there before, but it also showed a new small mass near the other one.

So taking all of that information, we began to address one issue at a time.  First of all, I have been retaining water, as my ankles and feet, hands, and some other areas have swelled up quite a bit and quickly.  This could also affect the cough, which has been wet and wild.  So I am taking a diuretic to help get rid of some of the excess water, and am taking a stronger dose of codeine to help suppress the cough.  I started on it last night, and it did help me sleep (I even slept somewhat lying down, not sitting up against the back of the couch!), only waking up once for a short coughing fit.  I have to take it on a regular basis, though, so will fight through the sleepiness until my body regulates to it, and will deal with the not so fun side effects of constipation.  All for a good night's sleep!  Today I felt a little better, only having one bad coughing fit when something hit my throat wrong and set me off.  Second, my phosphorus is quite low, so I have to take tablets for that, as well as magnesium.  Third, the kids and I had our seasonal flu shots today, and are waiting for the H1N1 to become available.

Lastly, I signed the papers to enter into the trial for the new medicine, Everolimus, along with the replacement one for Sutent, Nexavar.  I will travel back to UCSF on November 12th to actually get the new medicine and begin the first treatment, which I will continue orally at home.  The treatment, as best I understand, is ongoing, not on a cycle like I've been on up to now.  Matt and I have gone over all of the possible side effects and have decided we will just wait and see what happens rather than speculate and panic.  The one thing we will pray about, and ask you to pray about as well, is that the balance of doses between the two medicines is correct for me, and doesn't turn toxic.  Wow, when it's said that way, it doesn't sound so great.

I'll leave you with some of the words to a song I have grown to love since I first heard it on its release.  It's by a band named Kutless, and I'm sure you've heard it on KLOVE.  It's called, "What Faith Can Do."  The words to this song say just what I have based my walk with cancer on: FAITH.

"It doesn't matter what you've heard
Impossible is not a word
It's just a reason for someone not to try
Everybody's scared to death
When they decide to take that step
Out on the water
It'll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing

I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
And I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do

Overcome the odds
You don't have a chance
(That's what faith can do)
When the world says you can't
It'll tell you that you can!"

Keep walking in that faith, my friends.
Danene
October 28, 2009