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

A Full Day at UCSF

Hi, Friends,

Tomorrow my mom and I head to UCSF for a full day. We'll hit the road at 6:45 am for the first appointment at 9:15 at the main hospital at Parnassus for a Pulmonary Function Test. I still have the dreaded cough, and haven't been able to use either inhaler for the day in anticipation of this test. Hopefully we'll get some answers and some results, as nothing has worked well so far.

I head down the street for an injection for a bone scan at 11:00, head back to Parnassus for my CT Scans at 12:15, then back to the other facility for the actual bone scan at 2:00. And a scant half-hour after that, I meet with Dr. Ryan at Mt. Zion. Wow! I hope I can keep up with all of that. We should be done just about in time to sit in traffic on the way home.

Most of these tests are in preparation for the trial I am entering. I'll have more of the details on that, and hopefully all of the results of the tests, in the next few days, so will keep you posted.

One good thing from the blood test I had this past week is that my thyroid stimulating hormone, with the help of the thyroid replacement therapy, is finally showing itself to be in the normal range. I think if I was not fighting with this cough and all that goes with it, I would feel pretty good.

So, I get a full four weeks off between finishing Sutent 10 days ago and starting the new trial meds. If I can kick the cough, and figure out why I am swelling in my feet and ankles and elsewhere (perhaps from the steroids? argh!), it could be a nice break to recover, enjoy those foods I usually can't tolerate, and do all the things that have to wait for those breaks from the meds, like go to the dentist, get my hair back to normal, get flu and pneumonia shots, clean up my feet, and so on.

Because of this cough, this has been a rough month. I haven't slept in my bed for a couple of weeks, as lying down causes the mucus to sit in my throat and chest, so I prop up over the edge of the couch and sleep as long as I can, usually 2-3 hours before the coughing takes over. Then it's dozing until morning. I'm sure my family is as tired as I am of hearing the constant hacking. It's time for this to be over!

I was reminded anew, as I read a devotional the other night, that God hasn't forgotten what's going on in my life. He is still very aware of each thing I go through. He knew before it happened that it would happen. That is a comfort to me in those times of feeling cruddy and sorry for myself. He's there, He loves me, He's with me even when I cry out to Him for it to GO AWAY and it doesn't. He has not forgotten me. I will stand on that truth and wait for what His purpose is in all of this.

More soon,
Danene
October 25, 2009

A note from Danene's husband and partner in life.

Hey all,

Over the past couple of days I have been just overwhelmed with something I need to share. As most of you know, a year ago Danene had what we know as life saving surgery to remove her left kidney. During the recovery process in the hospital something happened to our relationship. There were three nights in a row that I stayed the night to get her through the painful recovery from the surgery. There were a lot of sleepless moments. But in the morning about 4:00-4:30 the great nursing staff would start to make their rounds to get ready for the doctors 6 am rounds. This proved to be some of the best times that we have ever had together.

As we would wake, we would start to talk, sharing life together and just talking about everything, and we would pray together. During this time in the hospital there was more healing taking place than just in Danene’s body. God was working on our relationship with each other as well as our relationship with him. “Husbands love your wife as Christ loves the church” Ephesians 5:25. I was not doing my job very well, and it’s something I have to work at everyday. God helps me with this process daily but only when I ask Him and allow Him to have control over my life. God has given us the second greatest gift He could give us: our wife; the greatest gift is His Son, Jesus. Guys, if you keep the relationship right with Jesus, He will help you keep your relationship right with your wife. You all just need to be thankful for the gift that God the Father has given us. Love the wife that completes you, cares for you, feeds you, cares for your kids, and loves you in spite of all of your shortcomings. Providing for her needs is just not going to work and bringing home the bacon.

Each morning when I wake it brings me joy to see my wife breathing, sleeping, and recovering from yet another day of meds. I just have to stop and give thinks for this gift that God has given. I will get on my knees before God and give Him the praise and thanks that He deserves. This past year has brought us through a lot of ups and downs as Danene battles with this wretched disease. We continue to serve God and we stand on the promise that “Everything is possible for him who believes in Christ Jesus” Mark 9:23. Some of you ask us “what can we do for you guys?” I would say to you to love your wife/husband so that you can be a good witness to your kids, family, and the world around you. Share the love Jesus showed us when he died on the cross to those around you and fulfill the great commission.

Danene and I will not question why it has come to pass that she got cancer. We will only hope that God will be glorified with our walk with Him through this process. Please continue to pray for us and for Danene’s healing, but only after you have prayed for your spouse.

In God’s Love, we are thankful for you all,
Matt (Danene’s husband and partner in life).