Its UCSF!

What a roller coaster of a week. On Sunday, Barry got up from a nap and the got dizzy, fainted, fell and hurt his back and we couldn't get him up. So 911 was called and the ambulance took him to Kaiser where they said he was severely dehydrated and gave him 4 liters of normal saline. Holy cow. Then we found out that Kaiser denied him going to Sioux City Iowa for the trial and that got me mad. So I filed a grievance with Kaiser, told them to escalate it and get him on this trial NOW. That was the only place that they had drug and a spot for him. THEN yesterday we got a phone call from the dr. at UCSF who said...."I think we have a spot for the trial". Today we found out Kaiser approved our travel to Iowa and we had an appt. on Tuesday for him to start the screening process. Great news!! However I was trying to figure out how I was gonna take a family medical leave, how to pay bills, who would be in charge of our house and animals, etc.....THEN at the end of today, we found out that UCSF had a spot and we had an appointment on Monday for him to start the screening process. HOORAY!! and YAY GOD!! I would have gone anywhere and done anything to have my husband start this drug, but this is SOOO incredible!! I wanted to fall to my knees at work and weep, but had to stay professional. Wow. God is awesome. However......Barry has pneumonia we found out. There was a small spot on his lung that the ER missed when he went in Sunday night/Monday morning. So we have him started on antibiotics so he can be well enough for the trial whenever it actually begins. I talked with the UCSF doctor and asked if he had the drugs in hand....he does not, but assured me they were forthcoming. He had spoken with the drug company, and said they should be on their way in the next week or so. Please my friends....pray that the pneumonia will go away quickly, that this drug .....will WORK and WORK FAST!!! I have to say, if you are a squeaky wheel at kaiser you can get what you ask for and the co-ordinator at our Kaiser is amazing. I am gonna give her a dozen roses for all the paperwork and hoops she had to jump thru to help us....and she helped us a lot. Thank you to all who prayed.....but its not over yet. Our journey is still going onward, but we keep our eyes on God and trust Him who provides all things for us. And He is AWESOME! Soli Deo Gloria!!

Gambling with a life

This is an image from our weekend away for our 33rd anniversary. Thank you God that we were able to celebrate it, although it was cut a little short because Barry had a VERY bad day on Sunday. So much pain, short of breath....this just gets harder and harder on him and on me of course....because what he feels, I feel. When he has a good day, so do I and when he has a bad day, so do I. That "the two shall become one" deal that they say at weddings is absolutely true. So in the meantime, Barry did NOT get on the trial at UCSF. There were only 6 slots available....6. Of course they were snatched up immediately. UCSF is petitioning for 4 more slots , but we have no idea when they will be available. So the question is.....do we wait to see when it becomes available, or do we get on another drug called ipilumumab that takes 6 weeks to work and is not specific for the B-RAF gene? Our Kaiser doctor wants him on the ipi NOW. The St. Mary's doc and the UCSF docs want him to wait and try the Plexicon first to get the disease under control. What to do? How to gamble with a life of someone you love? So we are on a mission to find a clinical trial anywhere in the U.S. to see if someone has a slot available. After numerous calls, we found out that the drug manufacturer only alloted 50 slots nationwide....50! If we can't find a clinical trial soon, we will start the ipilumumab. Problem with that is, it takes 6 weeks to "kick in" before any results are seen. Barry seems to be going downhill rapidly and it tears my heart to pieces. He is in such pain, has little appetite, and has shortness of breath. I wake up every night and watch him sleep, to make sure he is breathing. How long do we wait to see if a trial appears? The nurse at Kaiser told him flat out, "you don't have much time. You need to get on something NOW." That scared Barry to his very core. So we are praying for a miracle of some sort. Either he gets on a trial quick, or that God shuts all doors so we know that we must go on the ipilumumab. Wisdom is seriously needed and I keep turning to God, cuz I can't do this alone. I surrender it Lord.....please show Barry and me what to do. I just want my husband here for a longer time. I want 34 years of marriage at least......I hope I can draw another picture in the sand this same time next year that says, "Barry and Jan ..34 and counting".

Arming for the next battle

More bad news. Again. We had a pretty definite feeling that this next scan was not going to be good because Barry had been feeling so crummy. But I didn't expect it to be this bad. The cancer is simply flying thru his body. Its in his stomach now and his bowels and his colon aside from just plain growing bigger and bigger and bigger everywhere else. We are going to see the oncologist today because I found another lump near his ribcage and the doctor is concerned that its metasisizing to the bone. THAT would be horrible. I actually slept fairly decent last night but woke up at 5 and the tears began to fall. So I decided to get up and do my bible study and answer e-mails and update this blog. The nurse co-ordinator at Kaiser is finding out what the criteria is for Barry to start another clinical trial at UCSF on the PLX4032. My hopes are very much hinged on this new drug. This is the one that is targeted for his specific gene. If this one doesn't help, we still have more options, but they are running out fast. The bottom line is, this diagnosis is pretty much a death sentence.....its just a question of when. And with every fiber of my being, I am praying that it doesn't come soon. That this anniversary will not be our last. That he will be around to see the grandkids soccer games and band recitals and spelling bees. That he will be well enough to enjoy the holidays later this year. That I can roll over in bed and hold his hand for years to come. That we can laugh at the same corny jokes. That I can hear him singing (very badly) all those silly songs we sing together. The list goes on and on. I ask you to pray with me, my friends. I'm awaiting the day that I can post some good news. Its long past due. And so, we gear up for this next battle, putting on the armor of God, head held high , grabbing a sword and shield and putting our trust in God that He has got this whole situation in hand. Yes, we are weary, but we are ready. Bring it on.

Good news?? Maybe? Please?

So once again we play the waiting game. Barry has a CT scan scheduled for the 19th of July. Our anniversary (34 years) is coming up next week and we have the CT scan after that. We are trying to find a quiet place to go for a couple of days on our anniversary just to get away and deal with some stuff. But I want some good news for a change. I'm so terrified of getting more bad news from this next CT scan. He's had 2 rounds of DTIC chemo and we're hoping that is doing SOME sort of good. If not, we at least have an option to get him on the new drug (PLX4032) that may have a trial opening soon at UCSF. Barry has been so so tired ....very fatigued after the chemo, for 10 days or more. He's trying so hard to be better. But the Doctor actually told him to EAT EAT EAT. Barry's been trying to eat the Raw Foods diet because so many people have said its healthy for him. However, he doesn't like it and since he didn't like most of the food and was afraid to eat anything else that may "help" the cancer along, he just stopped eating. He lost 25 lbs. The doctors said "enough!!". So he is back eating the food he loves with the addition of healthy fruits and vegetables. We had a great 4th of July weekend going to 2 parties and a wedding. He was exhausted after all of that, but God love him....he did it. So....once again....we play the waiting game. And we pray. Please God....good news. For once....good news.