The Power of Prayer

Wow. This weekend was amazing on a couple of levels. On Saturday, some friends of ours asked some friends of theirs to come over and pray for us. This couple (particularly the man) was reputed to have some healing powers. Its his spiritual gift. I believe that God has the power to heal. No question. I wanted to see if this guy was one of those preachers you see on TV that shout "Hallelujia you are HEALED!" and touch them and the people fall over and shake etc etc. Not so with this couple. Very soft spoken and real. I was impressed. They had no pretenses, no money was involved, nothing like that. They came and talked with us for about a half hour then asked to pray for Barry. No problemo....I say go for it!! I'll take any prayer any time for my husband. So, they anointed Barry with oil and then laid hands on him....praying for about a half hour. They were very quiet....no loud voices ....just quiet and very intense prayer. The man placed his hand on Barry's chest and back and prayed the entire time. The wife sat at Barrys feet and prayed as well. I was praying also. While they were praying at one point, the man stopped and asked..."Do you feel how hot my hands are on you?" Barry said he did. It felt like a huge heating pad turned up all the way. The man said he felt like he was touching at hot iron. He finished praying and told Barry and I that they Lord told him that we were to take communion for the next 7 days together and to watch uplifting things on TV, like clean comedy, stuff like that. No problem!! They left after we thanked them for their time and Barry was exhausted, so he went to take a nap. Later that evening, I tried to get him to come eat dinner. He was in terrible pain. He got up and ate but I could tell it was a HUGE effort on his part. I helped him back to bed and he said he was in horrible pain and could not take a breath without every part of his body hurting. His breathing was very shallow and he could not find a comfortable position in which to lay and not have his breathing hurt him badly. All night long, it went on...shallow, hurting breaths and me praying for him, laying my hands on him. I didn't sleep much, because I didn't want to sleep until he was asleep. I asked him if we should go to the hospital and get some break-through pain meds and some oxygen but he kept declining. In the morning I had to get up early and sing with the praise group. Barry seemed to be doing a bit better, but he still hurt badly and couldn't breathe and the decision was made for me to go to church and he would stay home. Our daughter was there, so I knew if there was a real problem, someone would be there to help. I told everyone at church that Barry was not doing well and wouldn't be there for Father's day service. Halfway thru the service, Barry walks down the aisle and sits next to me. Astounded, I asked him what he was doing here. He looked at me with tears in his eyes and said "Its gone. The pain is gone. I can breathe. Here...watch!" and he took a deep breath. I wanted to cry my eyes out right then and there, but had to get up and sing with the group, so I quickly composed myself and sang. Barry asked our pastor if he could say a few words after the service was over and Pastor graciously let him. Right then and there, he declared the Lord is good and that because he asked God to help him and he (figureativly) put on the armor of God during his shower he breathed out and suddenly the pain just disappeared....enough for him to hurry up and put on his clothes and join me at church. It was very touching and I was so proud of him. After the service a bunch of the guys at church laid hands on him and prayed too. What an amazing bunch of friends! We had a great Fathers day with my folks coming over and all the girls were there as well. The girls gave Barry a very sweet card and wrote all over it saying how much he meant to them. The best blessing was that Barry could breathe again. The pain was not gone entirely, but it was sooo much better than before. He may not be entirely healed, but to him and to me....it was miracle enough that in one breath, literally, the pain disappeared just like that. God is good. He has shined a light on us and given us hope again. Soooo, once again....we continue to pray and pray and pray.

My sister says......

My sister says I don't ALWAYS have to write about cancer. I know I don't. But, as I explained to her, my life is invested right now in cancer. If its not being at an appointment, or figuring out a schedule, its when is the NEXT appointment, or can I go to a ball game with my friends, cuz what if Barry is not feeling well or how do I anticipate he is going to feel or what can I cook for dinner that is mostly raw foods (this is NOT my thing).....etc etc etc. We had brunch at a friends house on Sunday and guess what we talked about? Cancer. When we get together with our friends, the topic always, first and foremost is cancer. How is he doing? What can I do for you? Its all good. I want them to ask. But it is so prevelant in my life. We can't plan any vacations, we can't go to Nascar for a day (too much walking and sun), he can't mow the lawn or fix the sprinkler system...its to fatiguing. There is this little cancer cloud that follows you wherever you go. That being said, I love my sister. She means well. We grew up only 15 months apart in age and most of the time we couldn't stand each other. We fought constantly. She loved horses, I loved dolls. She was a hippie-chick, I was a nerd and a goody goody. She liked dark room, I like light filled rooms. The list could go on forever. But when the chips were down...like when we survived the 1969 earthquake that messed up our house, we slept in the same bed holding hands for a few nights together. After she married and moved out, I missed her horribly. Ever since, we have been wonderful friends, e-mailing daily and keeping up with each other. We are a team, even tho she is in the Midwest and I am out west. Sister....you keep me going. and soooo the second half of this was NOT about cancer. Half is better than nothing!! xoxoxo love you sister! PS....this is my favorite picture of you!! teehee!

First chemo

Chemo....another word that strikes fear in the heart of a cancer patient. You hear horror stories of how awful it was, how sick they got etc etc. But they always say every patient reacts differently. You know what? Its true. Thanks to some miracle anti-nausea medication, Barry had virtually no reaction whatsover. There is a new "rock-star" of anti-emetics called Emend that totally works. The only response Barry had was his blood pressure dropped rather alarmingly. His blood pressure is always on the low side, but after the DTIC it dropped to about 59 over 45....not good. So they hydrated the beejeebers out of him for the next 2 hours and watched him pretty carefully. When his blood pressure went to 92/54 they let him go. We got to St. Mary's at about 9:30 (half hour later than we planned due to getting completely lost in the city) and were there until 4:45pm. Looooong day. I had warm blankets and that "bib" I used during his interferon for warmth, barf bags....you name it, I had it in the car, trying to prepare for any sort of reaction. But he did great. He is losing his hair, little by little....this was before the chemo. late reaction from the interferon? maybe. Stress? maybe. He looks thin and pale, but his sense of humor and his will to live is still intact. We were watching "Catch Me if you Can"....with Leo DiCaprio and in the beginning of the movie, there is a little story. It goes like this: Two mice fell into a bowl of cream. The first mouse drowned. The second mouse paddled and paddled and didn't stop until he turned that cream into butter and walked out. Barry said, " I guess I can get some wisdom out of that." Yes you can. Barry is gonna be that mouse who paddles and paddles until he finds a way out of this. Keep paddling Barry. You're my hero.

Its Chemo

So we just found out today that Barry will be getting the chemo from the clinical trial, not the new drug. (plx4032). I was hoping for the new drug, but you know ....its all in God's plan. I do not pretend to know what is best, I just think I know what is best. DTIC is a proven drug approved by the FDA, so okay....we'll give it a shot. If this doesn't work, then we can go to UCSF who is going to be doing a trial using only the new PLX4032, so there is another option. If THAT doesn't work, there is also another new drug with lots of good results called ipilimumab. So....we have options. The waiting has not been easy. I had a bit of a meltdown this last weekend. I have been doing pretty well, keeping it all under control. Then last Friday we found out from Barry's latest CT san that the melanoma had spread viciously....it was now in his spleen and many many spots in both lungs....it is just so aggresive. I found out at work and had to keep it together cuz we were incredibly busy. We had a very busy Saturday with grandkids, spent all day with them which was great, the Sunday we had church, then breakfast with a friend, home for an hour then to a friends house for a late lunch. Finally got home at 4 and I was exhausted. My daughter had just moved out of our back room and left it a horrid mess and I was gonna deal with it next week. Then my husband got a phone call from his mom telling us that they were coming and would be here Wedneday pm. WEDNESDAY??? I had a function I needed to attend on Monday night and we needed to leave Tuesday morning for SFO for the doctor appt. There was no way I could get that cleaned, clean sheets, clean the bathroom and scrub the carpet that was filthy that night....I was just too exhausted!! I had a complete meltdown....laying on the floor sobbing and crying like a small child. My husband could not figure out why I was so upset. He tried to tell me not to worry, that everything would be okay, his parents wouldn't care. But I would care!! No way could I have someone go into that room. I got up and was throwing things into bags angry and crying. I knew Barry would just not understand that a woman needs to know that her house is in order for guests....not perfect, but not horrendous either. We need to know that there are clean towels, that the carpet doesn't reek, that there are clean sheets on the bed etc. I went to bed still crying that night, got up the next morning in a horrible mood and went to work. My husband called my daughter and told her to come over and help clean out the fridge (another source of my freaking out....so much yucky stuff that needed to be thrown out) so he was trying to help. I got home Monday night feeling a bit better. I needed to be in a better frame of mind for Tuesday. And lo and behold....Tuesday morning I felt so much better. We went to the doctors and we were told that we were getting the chemo. We had many many people praying, so we feel that this is Gods will. He knows much better than we do. So, now we pray that the chemo will be easier than the interferon, which was brutal. And we continue on, in this cancer drama. We pray, and we trust and we wait.

We have a plan!

Finally! This has been the longest wait ever. Barry has gone over 2 months without any treatment. The treatment suggested was bio-chemotherapy that was to be done in Riverside CA at a Kaiser facility. I read about it and the side effects were horrendous and it wasn't even gonna be super effective. What DID happen is we got signed up for a phase III clinical trial at St. Mary's in San Franciso. What's awesome is that it is so close to home. Barry had to test postive for a B-RAF gene. Kaiser actually did the genetic testing without us having to hound them about it. We had asked specifically about this test earlier knowing that they were developing a drug specific for this type of gene. After a loooong wait and numerous inquiries, we were told we were eligible for the trial. So then came the waiting....waiting for an appointment at St.Mary's for the interview with the doctors. It finally came on the 19th of May. It took all day. We were told to bring the tumor blocks with us because Roche (the pharmaceutical company backing the trial) had to do their own testing to make sure it matche with Kaisers. After we had the interview, and told yes we were definetely eligible, we had to wait for the test to come back from Roche. That took a week. Then after THAT came back okay, Barry had to get a whole battery of tests done before we could begin the trial. CAT scans, ekg, blood tests, brain scan etc. So with all THAT finally done, we have an appointment on Tuesday coming up to see what drug he is going to receive. Its either gonna be the new drug PLX4032 thats specific for his gene, or DTIC or dacarbazine, which is the standard of care already...its a chemo with yucky side effects. Obviously I know which one I would prefer. The PLX 4032 has had great results, but I don't pretend to know which one God is gonna give him. This is totally random. A computer chooses, not a person. So I have everyone I know praying that whatever drug he receives that it be the RIGHT drug....the one that is gonna do him the most good. Maybe its the DTIC....I don't know. I just know that we have gone 2 and half months with no treatment and Barry looks pale, underweight and he's always exhausted. But he is always in good spirts. That is what I love about him. I love him so. We've almost been married 34 years (coming up in July). I don't want to lose this beautiful man who went out an got me a grandfather clock that I have always wanted because he was afraid he wouldn't be around for Christmas this year. He was gonna spend a whole load of $$, but he talked to the lady who was selling it and told her just that and she just GAVE him the clock. Gave it to him!! its beautiful...doesn't work perfectly, but its good enough for me. it chimes, it ticks, it tocks and with every chime I think of how much I love my husband.