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

Lines down and out! It's a good thing.

Liz went yesterday to the Huntsman center and got her Hickman line out. It was convenient when she needed IVs or blood drawn, but she will be glad not to need the lines flushed every night with saline and heparin. So will I, as I did that part.

Liz was a little apprehensive at first, since the last "simple procedure" involved cauterizing with shocks. After a minute or two she was calmer and did great. Breathing calmly helps. After numbing the area - prick and stinging - all Dr. Scaife did was put in some scissors next to the tube, then open them slightly to enlarge the opening enough to get the cuff of fabric out. (There is a cuff on it so the body has something to hold onto and keep the line in place.) Then she just pulled the inner 8 inches of tubing out while keeping pressure on the vein up by Liz's neck, until it clotted enough to close. She just has a steri-strip over the small hole and it will seal up fine.

Liz is happy to think of showering without having to tape on plastic over her line, and to be able to raise her arms above her head more easily without it pulling. She has been feeling much better lately, and went out to dinner last night with JD for a burger and fries. Life is good!

She has had some swelling in joints - from knuckles to wrist, shoulder, hip, ankles - which occasionally makes it harder to move. She feels better, even if she is under 98 pounds. We try to fatten her up and she eats as much as she feels she can.

End of February

Rachel has come to visit us for a week or so - which was a lovely gift. She drove down here Thursday the 25th from Washington with her cousin, Jill (Harris) Springer and her two children. Jill's mom, Cindy, just had back surgery so she is happy to have visitors too. Rachel looks like she really is pregnant now. Liz has been sleeping with Rachel, which means I get to sleep with Brad again for now. :)

Friday we went to the doctor, because Liz had some persistent hardness in her abdomen which sometimes was painful. Dr Grossmann feels it is due to trouble with her bowels. She hasn't eaten enough hard foods to really need to poop. Also, morphine and oxycodone, both narcotics, tend to make the intestines stop doing their job of moving food through. We used a shot of methylnaltrexate which helped move gas and relieve pressure. (We will probably do that again.) We also added Senna-S to her list of pills to take, which stimulates the bowels.

As a result, Liz has been trying more foods, with mixed results. Friday night she had peanuts, popcorn, and some muffin! She has more of an appetite but some foods still don't stay down. Today she had some mini wheats cereal and milk, very slowly, a few strawberries, some smoothie that she said was too sweet - then the liquid came back very fast when she moved to try to get ready for church. We stayed home.

Liz also now has more redness and visible rash, especially on her face and neck, and forearms. She puts lotion or cream on it often. Her joints in various places hurt more, currently both shoulders, left wrist, fingers on right hand, and ankles. Both rash and joint pain are side effects of the study drugs.

We return to Los Angeles this week on Wednesday the 3rd and come back the ninth. Liz has appointments on the 4th and 8th. After that, she won't need big blood draws. We have an appointment to get her Hickman line taken out on March 19th.

We thank you all for your support and prayers and faith on behalf of Liz. She has been looking at dresses and hair ideas in a bridal magazine - Brad bought it for her. You gotta love a man who thinks like that.