Chest Pain at Huntsman

After the slip on the stairs last Sunday, Liz has had more severe lower back pain. She spent most of the week on the couch lying down, as sitting or standing became too painful. It seemed to ease a little by Wed. and Thurs.

Monday, way too early, we went to get Liz's port put in. It all seemed to go well, and Dr. Scaife put it far to the shoulder so it wouldn't get in the way of any necklines including her wedding dress. We hoped it would solve our difficulties with getting IVs in her tiny veins.

Liz went to her shower on Wednesday evening and did well. She had so many visitors who brought cards and gifts that were truly generous. Thanks to all who came and enjoyed our evening! Sheri Seymour donated some of Tony's flashy rings so we could all have a little "bling" on. Lisa, Joy, Lesley, and Stacey, thanks for your tireless work at cooking, planning, inviting and cleaning to prepare for the event! Liz was overwhelmed with the love and good feelings from so many that night. She and JD knew each other very well for the questions asked too. :)

Thursday the 24th we went to Huntsman for her CT and MRI. We went to Fast Track where they do blood draws to access her port. They had no trouble flushing the saline in but a difficult time getting any blood out for labs. They tried Liz in many positions: lying down, sitting up, breathing or not, coughing - finally got a little. She did her scans and an added chest Xray to see if she fractured a vertebra in her back when falling.

At home that night she again vomited, and had some chest pain. She took oxycodone and breathed carefully and it went away after about 15 minutes. She knew she was dehydrated from not drinking and tried to do more, but she really couldn't. She also has been constipated since at least Monday due to taking extra narcotics (oxy).

Friday morning we went to the infusion center early, hoping that they could give her extra fluids and get her hydrated before her Zometa infusion. She had about 1.5 liters in before they added the Zometa. She visited the bathroom and had a BM. :) She took another oxy for pain.

About 15 minutes later she started having chest pain. It got worse, and the nurses went into overdrive for an "acute" situation. They checked lungs and did ECGs and all seemed okay, but they sent her to the ER at the U of U hospital for immediate care. This was a scary time. Liz was in so much pain. She got morphine shots, and still needed more. They gave her dilaudid too, which seemed to help. She needed another CT to compare with the night before, and the IV they added (thinking her port was the cause of chest pain) also felt like she was burning when they injected saline in her arm. She got versed to calm down, and benadryl in case of reaction, then the needed CT. At 8 pm we moved over to the 4th floor at Huntsman.

Dr. Grossmann told us her scans showed two new lesions in the upper brain and maybe many small ones down lower. She has one tumor by her heart as well. Others are same or larger size. This means the BRAF drug is not working so we are finished with it. (We cancelled trip to CA for Monday 28th.)

Options include using another similar drug, MEK, or trying anti CTLA4, recently announced in the news as ipamimumab (I think). We wonder about trying any surgeries to mitigate her pain in her back. We want her to suffer less and enjoy life more.

Please continue in prayer on behalf of Liz, her doctors, and her family. We feel the love and support from so many of you! We know God loves us. He has a plan for each of us. We try to remember to pray "Thy will be done" and mean it.

Father's Day and Happy 26th Amy!

Well, it has been a rougher week. Liz has had some nausea and occasional vomiting, including Father's Day blueberry pancake. It could be just from the study drugs, or maybe from radiation on her lumbar spine area hitting her intestines on May 22. She takes Zofran.

On Wednesday 6/16 she was to have her infusion of Zometa, then her CT and MRI scans. None of those happened because she couldn't get an IV in. After eating breakfast she got sick, then tried to drink more. Still, she was too dehydrated for any of the 5 pokes by 4 people (over three hours) to work. She got pretty upset with all the tries. They poke a needle (or a plastic tube that is sharp like one) in where they think they can get a vein, then they push it around to try to thread it. That's the part she hates. She ends up with bruises and feels very anxious.

The end result is that we rescheduled her CT and MRI scans for Thursday the 24th, and we will do the Zometa the next day, then we see Dr. Grossmann.

We also have her going in tomorrow morning early (6am) for Dr Scaife to put in a power port. This will go under her skin, on her chest somewhere, and can be accessed for drawing blood or for giving her medications or contrast injections for scans. We both kind of wished we had done this a while ago. The nurses have been sensitive to Liz's wish that it won't show with her wedding dress in three weeks too. :)

We also postponed our trip to UCLA to see Dr. Ribas. I emailed him and asked if he preferred to have us come later with scans, or on time without them, and he wants to see them. We will fly June 28-29th now.

On another topic... we are happy to say wedding announcements were mailed (except those for whom we didn't have addresses yet). Let us know if yours doesn't arrive this week. Other planning is progressing too.

Oh, and we met with Dr. Meic (say "Mike") Schmidt, a neurosurgeon on Wednesday too. He said he would want Liz's skin to be very healthy before he would do any surgery, because it needs to be able to heal well. Liz has some rash where she had radiation, and he said lower levels of tissues would likely be somewhat damaged as well. He said she can use the back brace for longer trips but should strengthen her muscles doing normal activities as she can, which is encouraging.

This morning her heel slipped off a stair and she sat hard, which hurt, but she is fine. We helped her rest on the couch for a few hours after that.

We are grateful for our wonderful children! Phil, Amy and Libby have brightened up many days lately, and Matt comes up from Provo most weekends (to play games with Tommy and to see us). We look forward to having Rachel, Ben and Hyrum here soon! She sent some cute pictures in a nice Father's Day card, and we hope to skype today too. Tonight we have a good dinner planned to celebrate Amy, the daughter of our hearts. We love her!