Thursday, February 21, 2013

Answered Prayers...again

Insurance approved the brain MRI yesterday. Praise God! When I called the doctor's office with the authorization number, they were ecstatic. Appointment has been set up for next Tuesday at 5 pm. Dean will be able to take me & maybe Janessa will tag along, too. Then, I'll see Dr. G Wednesday morning to go over results & talk about our plan of action. I'm so relieved. Now we can move ahead. I celebrated this morning with blueberry oatmeal. It's going to be an "up" day, no matter what...

Wednesday, February 20, 2013

Insurance Issues

No doctor appointment this morning. I had to cancel because I still don't have approval from the insurance "gods" to get the MRI scheduled & Dr. G wants that done before we can move ahead. I finally got involved yesterday (nurse Karen has been fighting with them single-handedly so far, poor girl!) and called to see if my own voice would make any difference. Nope. I often think they could care less. It's not like I'm pretending to be Stage 4 or that I go out and request scans & MRIs. Just once I'd like to say, "let's switch places and see how YOU feel." They told me that my doctor needs to request a "peer to peer review", as if he doesn't have anything else to do with his valuable time & energy. I'll call the office this morning and tell them and we'll go from there. Good grief!
This morning, I got all watered up for oatmeal with fresh blueberries for breakfast...but I guess I'll have to wait until lunch. My stomach is on an "every other day" roller coaster, full of ups & downs, and today decided to be a "down" day. So, I'm drinking breakfast - chocolate-flavored protein. And since I'm still in my jammies, I guess Einstein & I will snuggle and watch some TV. Maybe that will take my mind off the issues that, quite honestly, I really have no control over at this point. Very frustrating.

Sunday, February 17, 2013

The Latest

Last Monday, February 11, I went into Huntsman for the follow-up scans after all my IPI treatments. It was a late scan & Dean was home from work, so he could have taken me, except that there was an important parent's meeting at the high school for all Driver's Ed students and he needed to go with Janessa to that. My ever-dependable Linds and sweet, happy Jane took me to my appointment instead. So grateful for them! Labs were fairly simple - IV was in on the second poke, but it ended up in my right forearm, which was kind of unconventional. Didn't have to wait too long & I actually enjoyed sitting in the waiting room, where the late afternoon sun was shining through the big picture windows right on me. Ah, the warmth & Vitamin D! I went in for the scan & it was pretty obvious that I was one of the last for the day - the wind-down had begun. The scan was for chest, abdomen, pelvis, and neck, and after a few minutes the technician told me they were starting the IV contrast. I could feel it enter my veins - it's a distinct warmth that travels pretty quickly from "top to bottom". All seemed to be going well until I felt a sharp sting in my right arm at the IV site. It kind of took my breath away - I really have never experienced something like that before, and I knew it wasn't right. I was inside the scan tube, so I said that my arm was stinging. The technician said, "What?", and I repeated myself. "My arm, where the IV is, is really hurting!" He said, "Okay, we're done with the scan, so I'll stop the IV." The pain lessened a tiny bit, but I was sure something had happened. In came the "team" to survey the "damage" , talking mostly to themselves & not to me. Finally I said, "Did the vein blow?" and one of the nurses said yes. The tech took out the IV & started to apply heat & pressure. Some contrast had definitely leaked into my system, but he assured me that it was "minimal" & my body would naturally absorb it, and in the meantime, he was pressing on the vein to express as much as he could. He thought I would have a bruise, but I was surprised when one didn't appear. It was tender, but not black & blue. Weird stuff, though. I guess there's always something "new", even after all the scans & contrast IVs I've had. And though that was scary, I walked out of Radiology & there was my little Jane, twirling & bouncing & making everyone smile and laugh. When she saw me, she called out, "Grammy!", and came running to give me a big hug! It was precious! She can come with us ANY time!
February 13 was the doctor follow-up. Unfortunately, my insurance had once again denied the brain MRI I was supposed to have before this visit, but at least we would get the results of the scans. The place was packed and we did have to wait a little while, so the anxiety grew. Dr. Grossmann, in his usual way, came in and simply announced that the scans were not quite as positive as we had hoped and "here's what our next plan of action will be". Of course, my heart sunk, but I'm always so grateful for his honesty & hope, in spite of results that we wish were better. He said it looked like I had "progression of disease", but it was progression with a "lower case p". He outlined several options, including a brand-new trial study that was just approved at Huntsman last week! How amazing is that! Once again, I was reminded that it is not a coincidence that I have this monster disease at this moment, when so much new information & research is coming into the fight. Finally, when he had outlined Plans A, B, & C, he turned to the scans to show us the "bad news". Tumors in the liver and shoulder seemed unchanged, but there was a new tumor in the groin, deeper in the tissue than the one I can physically feel. So disappointing! As Linds & I peered over his shoulder at the computer screen, he suddenly realized the comparison scan was dated in September, when actually my latest scan was in December. He wanted to talk to the radiologist about this and said he would send in the new trial coordinator to talk to us about me possibly applying for the study - which, by the way, I'd be the first participant from Huntsman. He left the room and I got teary with discouragement. All the anticipation of answered prayers (answered in "my will" & not necessarily "God's will"), all the hopes & positive wishes, suddenly dashed in an instant. It's an emotional journey, this wild ride. Dr. G returned before the trial coordinator had arrived & he was noticeably more hopeful. He said things looked better when compared to the December scans & that we were now looking at "progression with a very tiny p". The main bright spot was that the liver looked better, and this latest news might determine which option we tried next. It possibly could simply be a "wait & watch" approach with scans again in 8 weeks. He said he was taking my case before the Tumor Board the next day and that the group of oncologists, surgeons, and specialists would go over my scans & give their own recommendations for action. I would be the star of the show! - well, at least my nameless, faceless scans would be. For the first time in the visit, I felt hope. As Dr. G was talking to us, the trial coordinator arrived with his thick stack of reading material for me to take home & study; but, he still took the time after Dr. G left to discuss all the important aspects with me. It sounds very promising, as if THIS PD-1 might be our miracle drug, and I found that I could actually see myself going through this treatment. We'll see. It certainly has the potential to "unlock" my melanoma cells & allow the fighter cells to attack them directly. Awesome.
Still waiting for the okay to have the brain MRI. If there are no metastatic cells in the brain (which have been clear from the start), we decide on the options. If something does show up (please, God, no), then we have to radiate the brain before anything else. If there is anything of greatest importance to pray for, it's for a clear MRI. After that, we move forward, taking all the info, advice, & inspiration to determine the next steps. So, for now, I'm on hold.
Physically, I'm okay. No new symptoms or pain. Emotionally, I'm teetering a bit. After the appointment, I crawled into bed at 4 pm & didn't emerge from the bedroom until the next morning. I was drained & sad. I cried when my puppy came in & whined for attention. I cried when Janessa came home from a friend's house, brimming with news, and only quiet Dad to share it with. I cried when I had to cancel plans to attend a Relief Society meeting again & was assured that It was all right and I would be prayed for. It's hard. But, I knew I would feel better in the morning, and I did. The sun was shining, I felt a tiny bit of warmth in my cold bones, and hope had returned. Things will work out, they always do. God will never leave me alone. "Fear not, doubt not..." I will try.

Saturday, February 2, 2013

All Things Considered...

I had my fourth and final infusion last Wednesday. In spite of a snowy drive that took twice the time to get to Huntsman, it was a great day for me. Blood work and IV were accomplished on the first poke - a miracle - and the infusion itself seemed to speed by, time wise. I had my iPad to keep me occupied and my cute Linds to laugh and share thoughts with and we even got to FaceTime Chelsea & Mumsy in St. George...

...which leads to the next news. Mom had to have emergency surgery late Monday night for severe diverticulitis. She had suffered with terrible abdominal pain for several days (maybe weeks?) and finally went to the ER, dehydrated and weak. I am so sad for has not been good for a very long time. And then to have the ER visit & surgery happen on Dad's birthday, well, who wouldn't be depressed? I just keep praying that she'll heal quickly and get some energy back so she can start moving & grooving again. I love her so much.

The great staff at the Infusion Center came in to sing a "graduation" song to me when my IV was finished and also presented me with a certificate & darling fleece blanket, donated by a Young Women's group from South Weber. I wish my smile could have shown how really happy that all made me. I feel very blessed right now.

My visit with Dr. Grossmann before the infusion was very hopeful, as usual. I told him I could still feel the tumor in my groin - smaller, yes, but still there - and was that a worry? He said no, the IPI's job is to teach and re-teach my immune cells to recognize the melanoma and that learning process will not end with the end of the infusions. If it is successful, it will continue to teach and remind those cells for YEARS to come! He said that as long as my 3-month scans show shrinkage in the tumors, the IPI is successfully doing its job. We want shrinkage and destruction to the tumors, and that may or may not take place overnight. Of course, worst case scenario, if there is not shrinkage, there is always a Plan B , C, and D with Dr. G. He said I would probably qualify for the new injectable drug that is put right into the tumor under the skin. I'm praying for the shrinkage miracle - and the final destruction of the nasty cells - but I always leave Dr. G feeling like a long-term survivor. I did ask him one question: does eating chocolate every day thwart the destruction of those cancer cells? He laughed and said, not at all - he does it every day, too! Nurse Jan said, it's medicinal! Gotta love it!

So, we keep going and we keep praying. Scans are in two weeks on February 11 with results on February 13. All things considered, life is wonderful...