UCSF's Results

Dear Friends and Family,

First of all, let me tell you how good it feels to know that I have so many friends and family to refer to, and to know how many of you care and pray for me. I am thankful.

Matt and I were up at 4:45am on Thursday to begin our trip to UCSF. (In the future we will take the advice of some good friends and will spend the night before over there so we don't have to get up quite so early.) We arrived a little early, and the staff at the lab was gracious and took me early for my scans. After a little breakfast in the hospital cafe, and a little people watching in the lobby, we headed for our appointments with the doctor and surgeon, only to sit and wait for quite awhile. We finally got into a room, and once again met with a 'fellow', this time named Adam. (I took special note as I felt badly that I couldn't remember the name of the last 'fellow'.) After he met with the doctor, they both joined Matt and me and we had a chance to actually see my scans from the morning, which fortunately they understood because even with his explanations, I could only pick out certain things. I did get to see what the mass looks like and where it is in my body-all quite strange! He had only received the radiologist's report on my chest scan, so we will not know the details on the abdominal and pelvic reports until Monday, when I can call and get copies sent.

So here is the news:
First of all, there are no new areas of cancer that could be seen, saving the possibility of one lymph node somewhere in the vicinity of my lower/middle chest. It appears to be slightly enlarged and suspicious, but without the radiologist's report they are hesitant to say much. The mass on my right adrenal gland is still the same size but is dying from the inside out, much like an apple that looks normal on the outside but it rotten at the core. The four spots on my lungs are still there, but two of them are smaller by as much as half. So all of this means that the medication is working. This is good.

While the mass is dying, I would need to stay on the medication indefinitely until either the mass went away completely, or my body could no longer tolerate the medication. This would not be good. When the surgeon joined us, he agreed that it would be for my best that we remove the mass. As we were talking about this, he was doing the timing in his head that I would need to be off the meds for two weeks prior, and I've already been off one...and I realized that he was thinking this could happen in another week's time! Well, needless to say, I had a moment of panic before I could find my voice and respectfully request that we wait until after Matt's outages at work and until my parents return from their yearly trip to Hawaii. So, here is the plan we came up with. I will go on the medication for one more round of 28 days, then following the 14 days off, I will have surgery (on Monday, March 16th at 7:30am) to remove the mass and my right adrenal gland. (There was a little confusion as to whether I still have my other adrenal gland. Matt and I thought it was removed with the kidney and tumor, but the pathology report does not specifically mention it, so they will be calling 'Peter' (Garbeff) to check, as with the removal of the second adrenal gland, I will need to immediately go on steriods for adrenal gland replacement therapy, something I will need to take everyday for the rest of my life.) The surgeon felt that, barring something showing up on the radiologist's report that is unexpected, he should be able to remove the gland and the mass laprosopically with four small holes. Wow! While he is in there, he will also try to get a look at that suspicious lymph gland, and should it need removal, he would make a small incision straight down from my current scar and remove it and any others he deems necessary. So overall, my recovery with this surgery should be shorter and a little easier, making it possible for me to return to work before the end of the year.

After the surgery, I would need to go back on the medication for two more rounds, then have the scans again, and should the results show no more growths or suspicious areas, I would be able to try going off of the meds, which is our ultimate goal. I'm not looking forward to further experiences with the Sutent as it was harder on my body this past round, and will cumulatively get that way with each successive round. Dr. Ryan did ask how I was doing and what the side effects were that I experienced, and then was able to give me some information that will help me in the future, as well as his nurse's number, as the nurse, Jay, knows all about Sutent and its side effects, and has many helps that he can offer me. In Dr. Ryan's words, I should call instead of 'suffering at home alone.' Some of the things sound funky, but make a lot of sense. For instance, one of the side effects is Hand and Foot Disease, which I had, that begins with your hands and bottoms of feet turning red and painful, preceding peeling and blistering. Heat hurts the hands, and it becomes painful to grasp things, and the feet feel hot and painful to walk on. According to the good doctor, what is happening is that the medication is sweating out through the hands and feet. So one suggestion that has worked for many is to put deoderant on the bottoms of the feet! Jay also has some 'cocktail' concoction that should help the tightness and dryness in my throat that made swallowing so painful towards the end. All of the side effects, and many ways to try to combat them, were on a handout that he gave me, which I wish I would have had before as it basically listed every single one of them I have experienced. No more guessing if things are just me or are side effects. And yes, changing of hair color is one of them, as is evidenced by the increasing white at my roots. So is bloating, which I just experienced this week when my hands and face became swollen, and those new jeans I so enjoyed buying in that new smaller size suddenly were a little too tight. (Okay, so that was a little personal, but is the way it is!)

Right now, I have been off of the meds for a week, and my tongue just quit its burning, so my family will enjoy my cooking with spice and texture for the next week before I start the next cycle. I am slowly feeling better in other ways, like less pain when I walk, and bending over without the pulling from the bottom of my scar (which is attacked each time because the meds attack the newest cells, and my scar had not completely healed at the bottom before I started the first round of Sutent, so it gets scabby and very sore each time I am on the meds. Argh!) I am enjoying my class at school, and getting back into the routine of teaching and being with the kids. It was hard to share with them this morning that I will be going back on the medication, then having another surgery, then on the meds again. They were hoping that the cancer would be gone, and that we would have reason for a party. I assured them that although the time is not yet here, there will be a time we will throw a pary, and they will certainly be invited!

A friend of mine named Ashley shared with me something that I go back to frequently. Often cancer is referred to as the 'big C'. Well, my friends, it can only be a 'little c' to those of us who walk with Christ, as He is our 'Big C'. That certainly puts this journey in perspective. I want to stand on the promises that the Big C brings to my life, rather than letting the little c take over.

Thank you for all of your prayers, hugs, phone calls, and caring words for me and for my family. I am blessed by each of you and cherish the fact that there are so many of you. Please continue.

Danene
January 23, 2009

Back to Work

Hi, Friends,

This past Monday saw me back at work as a teacher in my second grade classroom. The kids greeted me with big hugs and warm hearts. My job-share partner and my long-term sub have done a wonderful job with this class, as they showed me through their behavior and learning throughout the day.

It was hard to go back in the sense that I would love to be a stay-at-home mom, but everything went well and I was able to step right back in and pick up most of what I needed to do. There are some things that are new to this year that will take me awhile to adjust to and learn.

I felt good at the end of the day, and actually didn't feel the effects of a full day on my feet until it was time to climb the stairs to our bedroom. Then the spots on my feet felt swollen and burning, and my throat was tight and hot. These are both side effects of the medication that I have felt before and expected. So far, in addition to those side effects, I just started getting the burning on my tongue that keeps me from eating citrus and spicy or acidic foods. I also found out, when I got my hair cut yesterday, that my hair is growing out white from the roots. So...this is not necessarily an effect I want to happen! (Although I'll take that over losing my hair.)

I have eight days left on this second round of medication. Then, on January 22nd, Matt and I will return to UCSF, where I will have chest, abdominal, and pelvic CAT scans, then later that morning meet with the urologic oncologist for the results of the scans as well as those from the presentation to the Tumor Board, then a surgeon to get his opinion on whether or not he thinks the mass still on my right side should be removed. Overall, we are anxious to have these meetings to know if the medication has worked, and what the immediate future will look like for me.

I've had so many people comment on my attitude throughout this whole experience. I want to share with you something that I read in my devotional book, Praying Through Cancer, that so perfectly put into words how I feel. Susan Eggerich (from Love & Respect Ministries) said, "I I knew it was God's will that I give thanks in all things, but this didn't feel like something for which to be thankful. That's when I learned about a sacrifice of praise. Each time I offered a sacrifice of praise, I knew I was honoring God, even though my circumstances did not always change. This isn't about feelings but about obedience." This is my goal, to have my feelings catch up with my obedience, so that my heart truly honors God, even when I don't know how all of this will end up. Once again, it's all about trust.

Thanks for your continued prayers, Danene
January 7, 2009