Road trip and surprise packages

Sorry it has been this long ... many of you have asked how things are. Here's the latest.
After Liz had her SRS on brain mets May 24-25th, she restarted her study drugs on 5/31 at half strength, then whole dose on Wed June 2nd for her appointments at UCLA.

This early June trip to L.A. was a driving one. Liz and Matt and I went in my Acura. After a short trip to Springville from staying overnight in Provo we went back for Matt's wallet so he could drive too. Unfortunately we forgot the bag of treats I put by the back door until we were down the road farther. We stopped in St George for snacks and lunch. Soon after that we tried to use an old power converter so Matt could plug in his laptop... but it didn't work. It killed my radio instead. Okay, it just blew the fuse, but that meant we had no music from CDs either. We made it through traffic and unfamiliar freeways with good directions from Val. We always appreciate the warm welcome, beds and food waiting for us there!

Her appointments in L.A. were fine. We saw Dr. Lo, dermatologist. We got another 3 weeks of medicine. (Next trip is on Monday 6/21 because Dr. Ribas will be gone the 23rd.) We even got to Diddy Riese's for an ice cream cookie sandwich - we shared, this time.

We had fun playing card games and hanging around with Val, Madison, Stillman and Brent for those two days, then got back on the road. Liz wore her back brace while traveling most of the time. After replacing fuses (Liz and I did it by ourselves!) the radio/CD player worked. We tried the converter once more and replaced the fuse again, then we told Matt no more tries. We listened to some talks on (marriage) relationships and communicating from Rachel - they are by Dr. John Lund, called "For All Eternity." We enjoyed the ideas and his examples. I recommend them. We arrived in Provo at 10:30 Thursday night, and slept there. We drove home to Farmington the next day.

We had a great surprise Friday night after we went to a movie. A "surprise package" had arrived: Amy and Liberty were on our front porch waiting for us! They came earlier than expected (June 30th was scheduled) and we were very happy to see them. We had lots of fun trying to get Libby to be happy about being here. After three days she let her grandma hold her and was fine. Then Tuesday Phil came too! Another surprise! We are just tickled to have them. Phil will head to Chicago late in July for a chance to interview with IP (intellectual property) opportunites, then finish the volunteer internship hours with the Red Cross before school starts. Amy and Lib will go August 11th I think.

Tuesday June 8th Liz went for Moh's surgery* on the jawline where a squamous cell carcinoma was removed in April. (It was postponed from the 24th) She was apprehensive and we asked for a Valium to help her calm down. Then Dr. Hadley looked at her face and said we don't need to do anything. Hurray! She will just monitor it and report quickly if anything new appears. Great news. (*Moh's surgery involves taking thin slices off and checking the slides to see if the tissue is free of cancer cells; then more is removed as needed.)

Liz has her side effects back: aching in various joints, usually knees, ankles, hips, sometimes feet and hands; some fever, loss of appetite and nausea, rash/bumps, and trouble sleeping. She tries to get rest she needs and still do some fun things.

Saturday we went to Provo for a shower/luncheon at Brick Oven. We had lots of people there and Liz got some fun gifts and gift cards. Dar and Shelly brought her two dozen red roses and delicious chocolate, besides coordinating the shower. Liz later went to see "The A-Team" and loved it. Sunday was a little harder, and she didn't keep her Cheerios down. She stayed home from church with JD. I wish she didn't need to repeat the joint pain every time she restarts the study drugs, and it was hard to see her get sick today. Hopefully she will feel more like herself tomorrow. She has developed redness and a bump in her left eye too, and we hope that will clear up quickly.

This Wednesday we have an appointment with a back specialist; her monthly Zometa infusion, and MRI and CT scans. It will be a long day at Huntsman. We will follow up Friday with Dr. Grossmann to see results of scans.

We thank so many for your prayers. We feel them! We have great family, friends and neighbors who are jumping in to help us plan and carry out a wedding reception in ... less than 4 weeks! (yikes!) We know things will work out. Thanks for your added faith.

Tracy

8 turned to 12 spots in brain

Today we heard Liz will wait until tomorrow to begin the SRS treatment, partly because Friday's MRI showed 12 brain lesions where before (5/5) there were 8. It makes the planning more complicated. She will begin Tuesday at 11:45 and go again on Wed at noon. Both times they hope to treat 6 spots, taking about 90-120 minutes each day. Dr. Tward and the nurses want to be sure she can lie on her back for that long comfortably. She took 90 mg of morphine sulfate on Saturday (instead of 60) morning and night, but went back to normal on Sunday. She also took some oxy to keep it manageable. Today at 3 she hadn't taken any oxy yet. She did say the numbness had spread around her calf a little more today (not what we hoped).

We focus on what we can do. We can get treatment for 12 spots instead of only 8 we knew about before. We can get radiation done and then begin BRAF drug again after some time off.

We also got a reminder call about an appointment she had for tomorrow to get the rest of her squamous cell carcinoma removed from her jawline. It turns out they need her for 2-6 hours, so we said not tomorrow. We need to do the SRS and will get this in two weeks on June 8th. It may take that long because they remove only thin slices of skin at a time, check for the cancer, then go back for more if they see it still there. I had thought it was a one time deep spot removal. I suppose I should have asked questions long ago when we set up the appointment.

Today Nell helped Liz clean much of her room. It looks amazing! Liz said she mostly supervised and made decisions. :) I was gone for a while to remove my personal things from school, and tell them I don't know when/if I will be back. It is more important for me to be available for Liz, and the ladies I worked with all understand that. I appreciated their hugs and concern.

To be continued... the clinical trial drug!

Liz and I went to UCLA today and spoke with Dr. Ribas. He looked at her CT scans (I brought them on disk) and said they don't look good. Liz told him how much better she has been feeling. We pointed out that the first scan he saw was from 1/27, three weeks before she started on the study drug, and that during those three weeks she went downhill very fast in pain and mobility. It is possible that most of the growth shown occurred during that time. He felt we ought to have seen more improvement across the board, or in all areas of her body, so maybe the drug is only working for some areas; perhaps some are due to a different mutation. There is another medicine which fights at another point in the mutation cycle, MEK. This would be a plan B option. The fact that she feels so much better now is a good arguing point if Roche decides she ought to be removed from the clinical trial for her cancer progressing too much.

Dr. Ribas said Liz can pursue radiation for the cancer in her spine. She should stop taking her study drug when radiation starts and then start it again when it ends. The half life of the drug will not interfere with the beginning of the radiation cycle. He also said kyphoplasty is fine to do on the drug. These options are both on the table for dealing with the cancer in her spine and deterioration of a few discs.

We are relieved to hear she can continue on this medicine. I do feel strongly that Liz made great progress while on it. I have prayed that her doctors would be inspired in their treatments and recommendations for Liz. We know God watches over us and trust in His plan for her future.

One other small concern was a bump along Liz's jaw which showed up in the last few days. Dr Ribas said it looks like squamous cell carcinoma, a side effect for some patients. We tried to arrange to see Dr. Lo but he was unavailable today, and we leave tomorrow. We will try to arrange a dermatology consult and excision in SLC.
(The study "requires" the sample for testing and covers costs only if done here.)

We stopped at Diddy Riese for ice cream sandwiches made from cookies -- YUM! Liz can use the 500 calories; I don't need them but I enjoyed them too. We head back tomorrow midday, after we turn in our laughable rental car. I saved some money but Liz wishes I hadn't... the Suzuki firenza is a gutless econobox. Whatever. We are just spoiled with using Val and Brent's much nicer car the rest of the time. :)