Giving Thanks

Hello Dear Friends,

It's been quite awhile since I last shared with you, and a lot has happened since then, so I'll do my best to catch you up.

As most of you know, I went off of the chemo I had been on for a year in order to clear it from my body so I could join a trial with a new drug mixed with one that would replace the Sutent.  I was off of the Sutent for a month, then had an extensive blood test, new CT and bone scans, an EKG and an echocardiogram.  During the time I was off of the drugs, I began to put on weight as well as swell in my feet, ankles, and calves.  My feet were so swollen that I could not wear any of my shoes.  It looked as if you could poke my legs and they would explode.  It was very uncomfortable.  At my appointment with Tammy, the nurse practicioner, on the day I was to start the new meds, the swelling was of great concern.  We discussed the steroids I am on, and even brought up the possibility of whether or not I really had needed to be on them all this time.  But she shared that what frequently happens when you are on steroids is that the gland you are using them to replace often grows lazy and will not do its job.  So if I was to go off of the steroids to see if my body could sustain itself without them, I could be putting myself at a big risk that isn't worth it right now.  So I will stay on them.  At the end of the appointment, I met with the nurse and with the gal that coordinates the trial schedules, and I took the first dose of the new meds.  This was a Thursday.

I did well on the new meds, learning from a counseling nurse that the side effects will probably be less than those I had experienced previously.  I do not have a 28day on/14 day off cycle like before.  These are taken continuously, only with a break should the side effects deem it necessary.  The side effects build up slowly, then peak, then plateau, and those you are left with at the plateau are the ones you have to deal with over time.  However, at work on the following Monday, I began to have an upset stomach and a slight headache that began to build as the afternoon progressed.  I managed to finish the school day and make the drive home (which I will NEVER do again as it is a miracle I stayed on the road).  By the time I got home, I realized that this was not a headache that was going to go away on its own or with a little sleep.  By that time I had begun to throw up as well.  I called UCSF and Tammy, the NP, called back with instructions to go to the ER immediately.  They called ahead with plans for a brain scan and for an MRI to find out if the cancer had metastisized to my brain, if I had meningitis, was having a stroke or an aneurism.  Wow.  I was blessed to see the friendly face of Meghan's girl scout leader, who is an
Er nurse.  She met us at the door and had a room prepped for me.  I started on Zofran for the nausea and Dilaudid for the pain, and those continued after I was admitted and through the next noon, when I finally realized the pain had subsided.  (Sidebar:  The dilaudid supressed my cough for the entire time I was on it, so I had uniterrupted sleep while I was on it!)  The CT and the MRI came back negative, so there is no clear explanation as to what caused the severe headache.  I was released on Wednesday morning and was back to work on Thursday.  I started back on the meds on Thursday as well.  So far all is well and I ahve not had any other problems.

Mom and I were at UCSF again this past Monday (I have to go every other Monday for the next three months) and I saw the good doctor this time.  I was able to show him that since I have been on the meds again, my swelling has gone away and I lost 15 pounds (that is how much I had gained!)  So we discussed the steroids again, and it is our goal for me to get off of them eventually or at least be on the least amount possible.  So we have cut one of the doses in half and I am just taking it every other day.  I feel much better fitting into my shoes and pants again!

Dr. Ryan also had the results of my echocardiogram from a few weeks past.  I knew he had something to share from it that I might not want to hear, so before he started I asked if there might ever be a time when I would come and there would be nothing new to go over.  His personality showed through when he said, "One of these times, I'm going to walk in here and say, 'You're boring-go home!'"  I look forward to that day!  Anyways, my echo showed that the diastolic part of my heart beat, or when my heart should be at rest, shows a number of abnormalities.  It's having to work too hard to do what it should be resting while doing.  So I will be visiting a local cardiologist in the next week or so.  I haven't been able to set up the appointment yet due to the holidays.  Dr. Ryan seemed to think it was something that could be managed with medication (more pills!)  I also want to discuss with this doctor the possibility that a few people have mentioned through their experiences that this cough I still have could be complicated by the blood pressure medicine I am on.

So for now, I continue the new meds, doing well on them as far as I can tell.  I will see the cardiologist soon, and I return to UCSF on Dec. 7th.  As for the holidays, there is much I give thanks for.  As with so many of you, I am blessed with family and friends who have prayed and provided for and loved me beyond my worth.  Awhile back, we sang "I Surrender All" in our church service, and I felt as though I was being asked to surrender the one biggest thing I wanted at that moment.  Well, that would be to be healed.  Now that doesn't mean that I don't think I still can be healed, or that God isn't going to do that for me.  But it does mean that whether or not it happens, I can give that up and be thankful that it will not change my relationship with my Savior.  I still am washed in the blood of the Lamb, am forgiven, and know that my future is secure with Him.  I do have so much for which to be thankful.

Giving thanks for each of you this Thanksgiving,
Danene
November 25, 2009