Puppy love

Yes, there is a new love in my life. I decided to adopt a puppy. My daughter saw an ad at the Petaluma Shelter for some puppies that just became available. They are little mixed breeds of poodle, cocker and terrier and maybe something else, who knows?There were 4 of them available, 2 males, 2 females. They were little Heinz 57 dogs and soooo adorable. I went down to the shelter to view them on the day they said they would have them there to view. The day I went down there I was incredibly depressed. I put an application in for the puppy, never dreaming they would call me. There were about 50 applications for the dogs and they picked me! When I saw their pictures there was one puppy that I really really wanted, but I thought, if its meant to be, its meant to be. When I put the application in, I didn't specify which dog I wanted at all. I didn't even specify male or female. I just figured if it worked, God would make sure I got the right one. So when they called, they told me that one male and one female was left and which one did I want? I hemmed and hawed, and finally said, "how about the female?" And guess what? It was the one I really really wanted.... a little golden brown cutie and they told me to come and get her the next week after they had her spayed. They spayed her, microchipped her, heartwormed her and did her first vaccinations all for $53. I can't believe it! One of the things that was keeping me from getting a puppy was the expense. I didn't want to pay $250 to a shelter, or buy a pedigree dog and THEN have to go get them spayed etc. Tthe shelter did it all for me and that was a blessing. And this little puppy is going to be my therapy dog. She is already so good. She has only had one accident in the house since I got her 2 days ago. She sleeps good (of course with me) for the most part. She cries when I put her in her crate, but that will stop after a time. Right now, I'm just grateful for something to snuggle with in the morning again. Waking up to puppy kisses is a definite mood lifter. And I need something to help me thru this Christmas season. I've had some pretty hard "falls" so to speak. I completely lost it at advent service the other day....a total breakdown with uncontrollable sobbing.. Luckily my precious "posse" was there to hold me up and let me cry on their shoulders. And now I have a puppy, who I have names Sophie, to unconditionally love me and that is balm to a sore soul. I will keep you updated as to her progress. Right now, puppy therapy is a good, good thing.

Giving Thanks

In 1 Thessalonians 5:18 we are directed in the Bible to give thanks in all circumstances. ALL circumstances....not just the good ones. Hard concept? you bet. But as I see it, God is not telling me to give thanks because my husband is gone, but to give thanks because I have the blessed assurance of knowing where he is and where I will be when I pass away from this world. Death is a part of life, and I know that, and I will miss my precious Barry forever. Not a day goes by that I don't yearn for him in some measure....whether its to come and tell me whats wrong with my car, for a hug, to share a funny story with....its very hard, especially during the holidays. But in the circumstances surrounding Barry's death and passing, I have been extremely blessed by wonderful family and friend support, support at work with my boss and co-workers. My friends husbands have come by to do my "honey-do" chores at the house, such as cupboard doors that were falling off, to cleaning my gutters, hanging pictures, moving furniture around, re-programing the TV remote....all those things I have issues doing. When my husband was in his last days, I whispered to him more than once, "I'll be okay honey, I promise. I'll have help. Its okay to fly to Jesus"....and I meant it. My daughter Julie promised him to help me with all things electronic and bless her heart, she has. My sister, her daughter and family came out this past week to spend Thanksgiving with us and what a blessing that is. My niece has 5 children and that alone keeps you distracted. Her youngest daughter was baptized this past Sunday and what a joy that was. The god-parents had 5 children as well and combined with Kimberly's kids and my 5 grandchilrend there was a grand total of 15 children in my moms house for the party afterward. My mother should be made a saint for all of that....she has been such a support to me. But I truly feel Barry's presence still. The other day I had such a vivid dream about him it set me back for a bit. We were in bed, reading the paper and drinking coffee like we loved to do on Saturday mornings and he rolled over and hugged me. I could actually feel his skin, the rough patch on his back where he had radiation and that hug felt so wonderful. When I woke up, I started to cry and pretty much continued throughout the day. There have been other times too, and I believe the very first time was during his memorial service. For those of you who don't know, at the end of the service, I got up to thank everyone for coming and for being such a support to me and I started to sing a stanza from the song "Shout to the Lord"....Do NOT know where that came from. I am a singer, for sure, but during the service I had been sobbing particularly hard during one song , "Awesome God" which was Barry's favorite and was barely holding it together during the rest of the service. The other thing you may not know is that my husband could NOT sing. At all. Wanted to all his life, tried out for glee club only to be rejected soundly. He used to say he sang in the key of "r" for "really rotten". But he sang anyway. Loud and proud. I got used to it, his total off key renditions of any song he sang. So when I busted out with this song at the end of the service, I believe it was Barry's spirit combined with the Holy Spirit, letting me know all was well, he was in heaven and finally got the singing voice he always yearned for and was singing with all the hosts of heaven. Barry is safe and completely whole and for that I will give thanks. For family and friends, I will give thanks.....but mostly for my Lord God, Savior and friend who has never left me and will always hold me up. For He is:

"My comfort, my shelter

Tower of refuge and strength.

Let every breath, all that I am

Never cease to worship you.

Shout to the Lord all the earth let us sing

Power and majesty praise to the King

Mountains bow down and the seas will roar

At the sound of your name.

I sing for joy at the work of your hands

Forever I'll love you forever I'll stand.

Nothing compares to the promise I have in You."

The Circle of Life

Yes, I know its corny, but its true. There is a circle of life. As one beautiful soul left this planet, a new beautiful soul entered in 2 months later. Eva Elizabeth arrived on 11-3-10, born to Laura and Mike. It was a difficult birth, but my daughter was a champ, pushing thru the blinding pain for hours to give her little daughter life. Little Eva was in what they call "military position", which means her little chin wasn't tucked down. I told Laura it was because daddy was whispering to her to keep her chin up in life and Eva took it quite literally. Laura's labor kind of reminded me of myself and a different kind of pain, and how I am pushing through it. And at times it is blinding. I likened it one day to an ocean of grief....how you sometimes are able to dog paddle and sometimes you are sucked down by the undertow and you have to fight your way to the top to breathe again. Since I seemed to be getting sucked down a lot, I finally called my doctor and have started some anti-depressants which seem to keep me on a little more even keel. Not quite so many undertows, or I've learned to use some water wings, one or the other. I still miss him every day, and talk to him every day. I've learned how to sleep more toward the middle of the bed, but I still keep one of his flannel shirts wrapped around his pillow, so I can still smell it. Sometimes it makes things better, sometimes it makes the grief worse. It depends on the day. But with all the dark, rainy days coming up and all the holidays, I just felt like I should do something to stave off cold, stark depression that seemed to be getting a grip on me. On the surface, I seem to be doing okay, but its like the old adage about the duck, who seems to glide effortlessly on the surface, but is paddling like mad underneath. There are days when I haven't cried, which is amazing to me. I'm still sad, but the tears don't flow as much as they used to. Doesn't mean I don't miss him, I do. Terribly. Always will. Miss the cheerful hello on the other end of the phone when I called him every day on the way home from work. Miss the hugs, the cuddling, the talking to someone at the end of the day about how things went at work, and just plain loneliness at night. But it IS getting better....little by little, day by day. Baby Eva's arrival seemed to help a bit. I'm anxious to see her little personality shine through and see if she has any of her grampa's traits. For now, I'm grateful for the circle of life. For life. Period.

You never know....

I received news yesterday that a pharmacist that I had met only a few times, who worked here at a local hospital was killed in a car accident. His wife and daughter were both pharmacy technicians, as am I, and although I had not worked with either of them, two of my friends and co-workers had. My boss had also worked with the pharmacist who was killed. As we all sat horrified, hearing the news, obviously we were all shocked and it got me thinking about the man's family. What was the last thing they said to him, and he to them? Did they all know how much they meant to each other? Did they know about Jesus and heaven? I had the undeniable privelege of telling my husband every single day how much I loved him, not only when he found out he was ill, but long before that. The last 8 years of our marriage was probably our best. We enjoyed each other and laughed together and there was no doubt that if God would have seen to keep Barry on earth we would be celebrating our 50th wedding anniversary together, if not longer. So how do you treat your spouse? your kids? your loved ones? What would you regret, if anything, if one of your loved ones was suddenly taken from you? Are you constantly irritated at your husband or wife? Constantly yelling at your kids? Ticked off at your co-workers and talking behind their back? How do you treat the retail clerks where you shop? Its very thought provoking. I try very hard to treat everyone with kindness, but sometimes life just gets in the way and its easy to snap or get impatient. I know I don't want the regret of knowing I never told my friends or loved ones just exactly how much they mean to me. I would hope that all my friends and family know that I treasure them , no matter what happens. I know we all don't tell them every day, but still, they know. I know that when Barry passed away, he knew that I loved him unconditionally, and I knew he felt the same about me. We had no secrets from each other, there was nothing to confess, no wrongs to make right. The more I think about this, the more I realize how God had blessed my marriage and continues to bless me. But obviously we are humans and we snap, or make a snide comment here or there, never knowing, possibly the effect we can have on people. I remember my sister writing in her blog, after her car accident about a woman in the grocery store who made a rude comment to her and it absolutely devastated her. She was already in a tender mood about things and recovering emotionally from her car accident as well as physically. I'm sure that lady never knew how deeply she hurt my sister that day. Never crossed her mind. But my sister sure remembers it. On the other hand, one day I was in the grocery store years ago and some total stranger came up to me and said, "That dress looks so pretty on you.". Did it make my day? You betcha! And that was YEARS ago, and still I remember it. So, I will try to do better every day. I will try to tell those I cherish how much they mean to me. I will take time to smile at the people in the stores and walking in my neighborhood. Because you never know. You just never know.

My memories

I don't want to forget him. Now, of course, as I write that I can hear you saying, "You will NEVER forget him" and thats absolutely true. What I DON'T want to forget is the little things....how he used to make what I call "the daffy duck face" when he felt silly about something, or the way his hands felt as I held them, all rough and care worn. My mom and I were talking about my dad the other day and she said, "What I missed after your father died was his whistling"....I forgot how he used to whistle!! And he whistled great....he could have been the guy whistling the tune on "The Andy Griffith Show" theme song, he was that good. That got me thinking....what do I want to remember about Barry?

I want to remember the way he said hello, which was "HELLoooooo", or sometimes he'd say, 'herrrOOHHH" or "whats up buttercup?" or the way he'd say " I love you tooo"...when I'd tell him I love him. I want to remember how he used to get up in the morning and scratch AJ(our corgi) until he AJ rolled all over the floor in anticipation of getting his dog cookie in the morning and how he'd get up and make a pot of coffee on Saturday morning,put it in a thermos, bring me the paper and we would read the paper in bed and drink coffee for about an hour. I want to remember how he slurped his coffee and said "ahhhhh" with that first sip, and how he always had a packet of splenda in his robe pocket for me when I wanted a refill. I want to remember how he would cry every time, yes every single time the youth kids would have the Christian Witness night and they would profess their love for Jesus and what He meant to them. It never failed...and the kids teased him constantly yet lovingly for this. He just loved those kids. And he cried when I sang too, unashamedly. That was the sweetest thing for me. When I would sing in church, I would always look for him at the end of my song and there he was with tears in his eyes. He tried not too....but that tell-tale little cough he would make when he got a lump in his throat was a dead giveaway. I want to remember the way he would run with that little gimpy gait of his, and the way he yelled, "NASCAR!!!" with Ryan at the Nascar races and Ryan would respond, "WOOHOO!" and they would high five each other. Every year. When he first took me to the Nascar races in Vegas I was unenthusiastic to go, except for the Vegas part of it. But when I first heard those engines start up and felt the raw power and the crowd going crazy I was hooked. I thought Barry might be unhappy to have his wife go with him....maybe this was just "guy time" that I was taking away from him, but he loved that I enjoyed it with him. I want to remember the way he said ' BRRR!!" when he got into bed and the sheets were cold. He hated the cold....he was always cold and I was having hot flashes. I was always opening the window and turning on the fan and he, bless his sweet soul, put up with it. He would say he was freezing and turn on the heated mattress pad in the bed and just deal with me. What a man. A real man. Seriously...that is a man who loves his wife who does that and does not complain. The one thing I will always remember and never, never forget is how he loved me. Really, really loved me. That whole, unselfish love that every man should have for his wife and I, as his wife...I was blessed. To know that I am no longer a wife stabs at my heart, because I truly cherished that part in my life and was so proud to call him my husband. I still expect him to walk in the door. My head knows different but my heart is still not accepting the fact that he is not gonna walk thru that front door with a cheerful hello, the clink of his keys on the table, the clunk of his shoes on the floor and a big hug waiting for me every day when he came home. The hug.....oh how I miss that all encompasing hug he always had. I will always miss that....and never forget the love. I love you Barry. Always. And that I will never forget.

Coming up for air

Breathe. Breathe. I feel like I've been sucked into ocean of grief. Plunged in with no air supply. Must fight to breathe, only to have to feel your lungs exploding until you finally, finally struggle to the surface to take in a quick breath, only to find yourself tugged down by the ankles again to the abyss of grief. Since I last wrote, we have had the memorial service and what a service it was. Attended by 386 people, packed, packed church with the most awesome music by my praise team. Barry was honored, God was glorified which is what we wanted. My friends have been so incredibly amazing I cannot even begin to find the words to honor them. My sister, staying by my side, sleeping in my bed, holding my hand. My friend Holly from Boise coming out to hold me up, also sleeping in my bed so I would not feel so alone, gently and tenderly leading me through the worst moments of my life....Michele and my church friends (I call them my posse) calling me daily, coming by almost daily, calling, texting, e-mailing me....cards upon cards....so many I had to get a giant basket to hold them all. People have come forward with money and offers of help around the house and to take me out to lunch.....its incredible the amount of love I have been shown. When I whispered to Barry before he died, I said' Its okay honey, I have help. People will help me. It's okay to go. I love you , I love you , I love you"....I didn't even have a clue how much help I had. I took 4 weeks off of work to deal with the amazing amount of paperwork you have to do when someone dies and also, apparently, I am now the business owner of The Car Doctor. ....wow. There is also a staggering amount of debt to deal with, which is why Barry said he was not ready to go. I know he wanted to get this in order before he passed, but he went sooo quickly. None of us were prepared for him to deteriorate this fast....least of all him. But I have had help with that as well and none of this is going to go away easily or quickly. This will be a very long, long ordeal. So, I am thanking God for the wonderful friends and family who have stuck by my side and keep calling and texting and e-mailing to see how I am. How am I?..... hmmmm. Good question. Grief is a funny animal. Somedays I feel strong and feel like I can handle being alone. Then those are those other days....the days when I feel like I'm mired in mud. Going forward is a HUGE effort and you have all this stuff stuck to your shoes that doesn't seem to go away, even after you wash them with oceans of tears. I cry every morning when I wake up, because I used to roll over and hug him every morning before I got up. I cry every night going to bed because the bed feels huge and empty. I cry on the way to work just because I can. Then came sad news that my Uncle Bill passed away very suddenly two weeks ago and that hit like a ton of bricks. Then another member of our congregation's husband, also named Barry, died of pancreatic cancer the end of September. Grief, grief everywhere. This other Barry was diagnosed a month after Barry. This past weekend we commemorated my Barry on his birthday by going out on his boat on Friday, with Ryan (our "son"), leading the way and toasting him on his would be 54th birthday. Sad, yet joyful. Then Saturday went to my Uncle Bills memorial and while it was wonderful to catch up with the cousins and my Aunt Judy, saw pictures of long ago when my dad was alive and my gramma Howard too.....memories galore. Sad and poignant and some laughter as well. Then on Sunday went to Barry Baums service and the new widow and I exchanged sad, yet knowing looks and promised to have lunch with each other soon. We both know how awful this September has been. I'm still waiting until I can laugh with abandon again. Still waiting "til I can sleep thru the night without pharmaceutical help. Still waiting until I get to heaven for that joyful reunion with the love of my life....until then, I will breathe.....breathe....breathe.

Battle lost, Battle won

The love of my life slipped into Jesus arms on Thursday September 2 ,2010. On Monday night he had a terrible night of vomiting all night long. In the morning I called the doctor and and said he needed some hydration. With my my moms help, we barely got him into the car and he even vomited in the car. With the help of a wheelchair we got him to the infusion suite where the nurses got one look at him, got him into a bed and called the doctor. The doctor came in, looked at him and beckoned me out of the room and said simply "he's dying". Then he went into Barry and told him gently but firmly, "my friend, you are dying". Barry looked at him in disbelief and said "So its come to that?" The doctor nodded. They hooked him up to some hydration and some anti- nausea medicine, made him comfortable and kept him overnight in the hospital where he was barrraged by visitors coming in to see him. A friend of ours looked him in the eye and asked "Do you know what is happening to you?" He said, " I'm dying". She asked him if he was afraid. He nodded. She asked if he knew where he was going. He nodded. She asked if he was afraid for those around him. He again nodded. After everyone left and I spent the night with him in that hospital room, I kept assuring him I would be okay. The girls would be okay....the grandkids, parents, sister, everyone.....we would all be okay. And if he heard the voice of Jesus calling him, it was okay to repsond. He was non responsive all night. We were able to take him home on Wednesday with hospice and he seemed to be much more relaxed being at home. My sister, my beloved sister and her daughter Kim changed thier flight plans and was able to meet me at my house on Wednesday when he came home. My sister and I spent the night with him, taking turns sleeping on the couch. He actually gave me two kisses first thing in the morning. After that, he was non responsive again. His sister arrived that afternoon. By a little after 6 I noticed his breathing had slowed considerably and that there was more time in between breaths. I told his parents it could be anytime. I called the girls in from the garage where they were talking. Between his parents, sister, me and the girls, we were all with him, holding his hands, stroking his arms, hair, feet, whatever we could touch.....and he took his last breath. I said, "he's gone". ....stood there for a minute while the girls wept uncontrollably they I let go with wail that was so uncharaceristic of me.....screamed from the depths of my soul and collapsed in a heap on the ground. Helpless to stand. I have felt grief before. I lost my maternal grandfather when I was 9, my paternal grandmother when I was 13, my father when I was 17, my grandmother when I was in my 40's....but this....this. This is unlike any grief I have ever felt in my soul. Gut wrenching, soul twisting, undefinable grief. A chapter was now closed. I was no longer a wife, I was a widow. I no longer had a partner to cling to and snuggle with and help pay bills to hold my hand when I was scared. People kept saying "he's out of pain, he is at rest". I know that. I KNOW he is with Jesus in heaven, beyond a shadow of a doubt. But right now, the pain of NOT having him here with me superceeds all of that right now. I cannot pray....I just cry out to God to help me, help me help me. I cannot do this. He lost the battle with cancer and he kept saying he was not ready to go. He was still planning a fishing trip in October. But the battle was won between Satan and God. He is with God and Satan has lost . Barry is in heaven and well and I pray he was looking down on us this morning with love and all his kids and grandkids were in church trying to support me. That was a miracle in itself. Julie and girls spent the night and Tobin got up in the morning and found one of his grampas shirts and wore it to church. When the Pastor was talking about how Barry was now in heaven, Tobin just began to cry and cry and cry. His mom took him out....it was just too much for him. I had to step out as well. But then we sang one of my favorite songs, a song that we will sing at his celebration, "Blessed be the Name of the Lord". How we still praise Him. How there is still joy in unbearable sorrow. I'm not going to be "happy" for a long while, but I can still find joy. It is still there. The joy of the Lord is my strength. My love is not with me, beside me anymore and before he went I must have kissed him a million times. The shell of him is gone and he has a new body a new mansion and a joy that surpasses anything we can even imagine. For now, I will soldier on alone, with loving friends and family to help thru the way....to hold me up when I cannot bear it. I still trust Him. And I will see my love again and he will wait for me. Until that day, I will continue to trust. I will continue to love. And I will continue to find joy even amidst the copious tears that are wept every day and thru the nights. The battle has been lost, yet ulitmatley, won, all because of Jesus and His love for us. And in that, there is joy.

Between sleep and awake

There's a great line in the movie "Hook" that Tinkerbell says to Peter Pan after he goes back to his home from Neverland. She says to him, "You know that place between sleep and awake? Thats where I'll always be. Thats where I'll always love you." I say this because in that brief, split second between sleep and awake each morning, my life is normal. In that split second, Barry will be getting up to give our dog his dog cookie in the morning, make coffee and bring it to me in bed. Reality is, the alarm goes off and I look at my shell of a husband who has had a bad night of nausea, vomiting and pain and I drag myself out of bed due to lack to sleep to do all of the aforementioned tasks while the tears run down my face. In that split second, my husband will tease me in the morning and kiss me good bye as he leaves in his big Ford F-150 that has a bumper sticker on the back that says "I love my wife." His arms will be strong and tan, and there will be mechanics grease under his nails. His voice will be strong as he will ask whats for dinner tonight and he will consume whatever I put in front of him with gusto. Reality is, the shop must be sold or let go because he hasn't worked since the middle of January. His voice is weak and his nails are white as snow, as is his face. He will not consume anything with gusto anymore as eating is a huge chore and nothing, nothing tastes good. In that moment between sleep and awake, we are planning vacations, and dinner out with friends and what fun things to do with the grandkids this weekend. Reality is, we cannot plan anything anymore. It is a day by day, moment by moment kind of thing. I'm gonna say this very cliche phrase, but its so true: Cancer sucks. Its horrible to watch the one you love suffer and try so hard and valiantly battle on and there hardly anything you can do for them besides hold their hand, their head and their heart. The tears flow frequently now as the cancer has spread to the brain, and we cannot start the clinical trial because of that. The disappointment and fear were tangible when the doctor told us at UCSF. We cried, we hugged each other.....we drove home as the numbness spread. Barry started talking about getting his affairs in order now. We start radiation today. Short of a miracle, things are looking very bleak. But we still hope, we still love and if love could cure him, he would have been healed a million times over by now with the outpouring we have received. We appreciate all those who have encouraged us, and never mind those who have come over and given us "premonitions" about what is going to happen. We place our trust in our Lord Jesus Christ. God is bigger than cancer. There are still miracles to be had. And God loves Barry even more than we do and maybe He can't wait to take him to Himself. And if that happens sooner rather than later, I will let go with dignity, trust and more love than you can even begin to imagine. Because he will still live in that place between sleep and awake. ....and in my heart forever.

What are you proud of?

What are you proud of? Is it your kids? Your job? That you're having a good hair day? Your house? I'll tell you what makes me proud, and thats my marriage to my husband. I'm not proud of a lot of things in my life, but one thing that I can say I am successful at and that is working at a marriage. Is my husband perfect? Nope....am I? HECK no....but my husband IS perfect for me. Why? Because both of us, from the very beginning, centered our marriage on Christ. We looked to Him when we had issues and prayed together and STAYED together. It also takes a commitment from BOTH people. I have many friends who broke up because one person was very committed and the other one wasn't. It definetely takes two in a marriage. And that saying about "the two shall become one"....it's true. When he feels pain, so do I. When he is in a good mood, so am I. He is a part of me, a part of my heart, my whole being is wrapped up in him. A marriage takes a TON of work, that's for sure. We had plenty of really, really rough times. At one point, I was done. I even started packing his stuff and worked up a whole speech about how this isn't working and he never spends time with me or the kids and maybe if we were to live apart, he would at least see the kids every other weekend.....I started talking to him about it when he came home one evening. He grabbed his stuff and said, " okay, if thats how you feel"...I told him to sleep on it and we can discuss it more in the morning. Well, that morning I woke up to my alarm clock and I had it tuned to "Focus on the Family" to listen to Dr. Dobson every morning. He had a program on that day about the stages in a womans life....and the topic that day really hit me. I rolled over, hugged my husband and said, "Don't go....lets work this out." And we did. At one point I asked him "Why do you even stay with me?" And he stated, "cuz I made a promise to stay when we got married." Wow. He was right. We both made a promise. So we stayed....and we worked....and we struggled, and it wasn't always pretty. Some years it was downright yucky. But you stay, and you work. And you know what? Its worth it. Every good year , every bad year....because for the last 10 years of our marriage, we have been best friends and partners. We hardly ever argue anymore. We laugh, we enjoy each other, we hang out together and do almost everything together. We fit. That is why this is so hard, this cancer....this THING eating away at the lifeforce that is my husband. He doesn't laugh anymore. He can't....he's too tired or in too much pain. Its a struggle just to get up or eat these days for him. Just to get in the car to go anywhere is agonizing for him. Waiting to get on this trial is agony for him and for me. Because he is a part of me. The best part of me. The thing I am most proud of. My love, my husband, my marriage. Thank you God for 33 years with this man. If for nothing else, I am grateful for that.

What a week....

So Barry is on antibiotics for his pneumonia, but he has gone downhill so fast its staggering. He basically has been in bed for 2 weeks. He walks and talks like a little old man...slow, shuffling steps, very weak voice...you can hardly hear him. He pants like a dog, because of the pain. I have been incredibly depressed over this whole thing, cuz it looks like he is dying in front of me. The wasting away of this precious body is just too much for me to bear. One night, while I was awake with him at 3am (which is the norm these days) , I asked him if he had been taking his Prozac. He said no. Then I asked him when was the last time he had taken his blood sugar or his insulin....he couldn't remember. Really? are you kidding me?? so then I got mad and asked him if he was planning on dying of kidney failure before the cancer got him?? I was so ticked off I was crying. I asked him if he had given up, cuz thats the way it was looking to me. He said " no, not yet, but I understand why people do give up now. I've just been fighting to get the pain under control and survive." I told him he was not gonna survive much longer if he didn't get off his ass and move around some more and take his medications! If he was planning on giving up and dying then let me know and I will call UCSF and tell them to give the pills to someone else. (We are STILL waiting for Roche to approve him on the trial. I'm telling you, this waiting is just agonizing). He said he would try harder. And bless his heart....he is. He actually got out of bed yesterday and ate some stuff and hung out for Julie's birthday celebration. Then today he is going out to lunch with one of his friends. He is having a lot of stomach issues. Its so hard for him to eat, because he gets cramps and either constipation or diarrhea. Poor guy. He really is fighting hard. It can't be easy. I pray and pray....so does he and so do our friends. I'm gonna say it again ....Cancer sucks. It's harder than I ever imagined it is. No matter how hard you think it is, you end up wishing it were that easy. Keep fighting my love....keep fighting.

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.

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.

Living in Limbo

When cancer is in your life, your life is a constant state of limbo. You wait for the next pain, the next PET scan, the next drug cycle....you can't plan anything really, cuz you're not sure how your loved one is going to feel. After the crushing news of having stage IV cancer, we grieved and waited to hear what our next move would be. So today, we hear that Barry qualifies for a trial at St. Mary's hospital in San Francisco. Its a study where one group gets the PLX4032 (the B-RAF inhibitor that is showing promise) and the other gets a form of chemo. We don't know which one he gets. But both will inhibit the disease for a bit, which is good. And if he gets the chemo and it doesn't work, maybe we can go to another trial that UCSF will be starting sometime in the summer specifically for the B-RAF gene....where everyone gets the drug. My oldest daughter Julie is on a mission to find everything she can about this new drug and to find a trial her dad can get on. My kids are soooo not ready to lose their father. They depend on him more than they realize. We have an appointment for a consultation in two weeks. Its strange to have a loved one handed a death sentence. You look at things differently. You try to hug your loved one more and more and try to drink in the smell, the hug, the warmth....everything, cuz you know you have a limited time to enjoy it. There is also a panic thats involved too....a "what am I going to do without you?' How am I going to get by? Will I get to keep the house? How do I pay this bill online? What are all your passwords to all your sites? ATM's? Where is the life insurance, the bill file and how do you do the taxes? My life will change....very quickly and very radically and I'm not looking forward to it at all. My hubby may get a reprieve from this illness if the right drug is found, but ultimately, it will take him. We just don't know when.....and THAT's the part that's hard to deal with. Just waiting....waiting....waiting....in Limbo Land.

The Worst

The worst news ever....stage IV. Its basically everywhere. After waiting anxiously alllll day to hear about the PET scan, my husband finally called at 3:30 on Tuesday the 27th and all I heard was his quavering voice saying, "its not good news". It had spread to his chest, his lungs, his spine and was back in his lymph nodes. I was at work and immediately started crying, hung up the phone and wanted to scream so badly! I kicked the counter and fell into a heap saying, " No no NOOOO!!" My poor boss. I finally composed myself long enough to go tell my boss who looked like a deer in the headlights and he told me to go home. I had to go sit in my car for a bit to compose myself enough to go home. I called my mom, my sis and some friends and drove home to hug my husband. His parents were there looking stricken. The pastor came over. My mom and stepdad came over. Some friends came over. We all prayed. This has spread so quickly, so aggresively if this is not treated he will be gone by the end of the year if not sooner. But! There is a ray of hope....and I cannot tell you how desperately I am clinging to that hope. There is a clinical trial of a drug, specifically for the B-RAF gene that, amazingly enough, Barry has. We asked Kaiser to do genetic testing on Barry and our doc said he would look into it, and never said anything else about it. Apparently, he had him tested for it. Well thank God he did. So now we have to find a clinical trial somewhere in the country and FAST for him to get on this drug. There is a chance he could get on a trial in San Francisco which would be amazing....we think it starts in May. We are hoping and praying that this would be a miracle that would turn this around. I seriously, cannot imagine...absolutely CANNOT imagine my life without this wonderful man. We have many people who are praying frantically . I'm praying right here in this blog....Dear Lord and Saviour....this husband of mine, this wonderful man whom I love with all my heart is going to leave me soon if not for a miracle. I humbly ask for your intervention in this, my Lord....to find him a clinical trial, that he be given this medication and for this medication in conjuction with YOU, dear Father, to be a miracle healing for him. Please, God. You don't want him yet. Please let him live here on earth for awhile longer with me....a long while if it be Your will. I beeseech you, and implore you and boldly ask for a miracle.
In Jesus name,
Amen

The Sunshine State of Denial

Ahhh...the beautiful State of Denial....a happy place, where the skies are always blue, time stands still and everything is "normal". I would like to buy real-estate there. Problem is, you can't buy there, you can only rent. And the landlord is a mean guy named Dose O. Reality. And he can kick you out at any time, kicking and screaming. Thats how most people leave, and I was one of them. You have probably noticed that I haven't written in awhile....thats cuz I was living in the most beautiful rented house in the above named state when the stinky landlord came and booted me out. *sigh* After Barry's radiation was done, we had a lovely few weeks of "normalcy." Barry's energy still isn't what it used to be, but it was improving, and we went and had some fun with some friends at dinner for my birthday, had a GREAT time, also went and looked in antique stores and found little treasures (no buying, just looking) and generally just enjoyed each others company. Barry went to work every day and so did I....just did the usual everyday stuff and ya know what? It was heaven. I enjoyed every single minute of it. Then BAM! Barry had pain in his sternum area when he took a deep breath. And there it was....fear. I told him to call his doctor, which he did and was advised to go to Urgent Care...which he did. They did a bunch of tests for his heart, which was appropriate, but no chest x-ray, which I thought, given his diagnosis, would be standard. I called the doctors office and made them order one, and he had one done with his brain MRI which was already schedueled. And there it was....a spot on his lung. Not just fear now.....terror. They could not tell it what it was, we would have to wait for the PET scan on Monday. My lovely state of denial was over and now appeared the little black cancer cloud that seems to follow every cancer patient I know. It just appears and disappears at its own whim, never letting you know when its gonna appear and turn your stomach into jello and your knees to oatmeal. I push it away and turn my eyes toward the sun (and the Son!) and try not to let it eat me alive....but you always know its there. And so....we wait. Again. and again. And then in the middle of all of this, BAM! a tiny miracle of life, born to my sweet niece. She had a problem pregnancy with cysts on the placenta. The doctors said, after delivering the baby(she was 2 months premature) that it was a miracle that Kim kept her in her uterus for so long. And if they had delivered her even one day later, it all could have had a completely different outcome for both baby and mother. So sweet baby Ella is a testament to God's timing and that miracles still happen. I'm waiting, hoping, and trusting my Lord and hoping He will throw a miracle my way.

Radiation.....complete!

Okay....done with all the therapy for right now. Phew. Radiation made Barry tired, but thats about it. Made his arm kind of stiff too, but other than that, this was a piece of cake compared to interferon. Now the waiting begins....
We wait for a brain MRI on April 19th. Apparently they have to make sure there is no cancer in the brain before they come up with another therapy if needed. We also have a PET scan due on April 26th...and THAT is the diffinitive result. I'm praying for NO cancer near his arm where he had surgery (the surgeon wasn't sure he got it all...got everything he could see, but he couldn't see far enough) and NO cancer in his back where there is a questionable spot. Trying not to be afraid...trying not to worry. God has this in His hand, but its hard not to imagine things. They tell you to hope for the best and prepare for the worst. How the heck do you prepare for the worst? I can't even imagine the worst....its un-imaginable to be without my beloved and wonderful husband. So I ask any of you who read this....please pray for NO cancer to be found. That doesn't mean there will be no re-occurence, I know, but I would like a repreive and so would my husband. God is in control....this is my mantra. Please, no cancer...this is my prayer.

Normal is just a setting on your dryer.....

Yes, yes I know thats a name of a great book, but its true. We are at a new "normal" and every day I wake up next to my hubby is a good day. Woke up laughing this morning, which is another blessing. That's one thing I do love about my hubby....we are always able to laugh with each other. It was about nothing phenomonal, just banter, but I am cherishing it so much now. Have a busy weekend planned and Barry is still feeling pretty wrung out. He is trying so hard. He went to work this morning and did 7 smogs and then went to his radiation appointment and now is on his way home feeling pretty exhausted. I'll say! Thats a lot for someone who just 10 days ago finished a very long and exhausting interferon therapy. Don't know that I could do as well as he did. Our conversations right before falling asleep pretty much go the same way every night, with each of telling the other we love them and me saying "please stick around honey....at least until our 50th wedding anniversary"....and him saying "I'm doing my best".....and then falling asleep holding hands. Does it get better? I think not.

A good laugh is needed sometimes

I had a "normal" weekend. Although our "normal" has changed, this was as normal as it gets for me right now. Barry is absolutely incredible and is working part time and starting his radiation tomorrow. My weekend consisted of a nice dinner Friday night at home with hubby and having my youngest one year old grand-daughter overnight. Saturday was spent with the littlest one and then some shopping , and then we went to SUCH a fun party. I forgot how much fun hanging out with friends was....and just being (again...) NORMAL. I put aside all the cancer stuff, and had the best time. We did karaoke (which I normally hate) but a bunch of the guys sang "New York New York" so HORRIBLY that all I could do was laugh and laugh until I cried. If you want to see it, here's the link: http://www.youtube.com/watch?v=AAhujE7PfEw I recorded it and whenever I want a good laugh, I look at it. I forgot how wonderful it is to just laugh and laugh and laugh....They even got us girls up there to sing "I feel the Earth Move under my Feet" and they laughed at us too....What a blessing good friends are....and what a blessing a good, hearty laugh is. It just made everything better.

Interferon....complete!

My husband simply amazes me. As ill has he was during his interferon treatments (stomach issues, chills, fever, no appetite, 15lb weight loss that he could not afford to lose, incredible fatigue etc) he has already gone back to work part time, two days after his last treatment. He is struggling so hard to get his life back. And its such an amazing blessing for me to have my husband back. When I come home from work, he is not thrashing around in bed with earth shattering chills, he is on the couch and able to talk coherently and watch some TV with me and actually eat a meal and almost enjoy it. It was so weird having to force my husband to eat and when he did eat, it was the bare minimum of bites before he had to go lie down or get sick to his stomach. We had our UCSF appointment and did not discover anything new, other that, if , God forbid, he DOES have stage IV disease there is a specific brand new, phase one clinical trial he may be able to get on, IF he has a specific gene that he needs to be tested for. It will cost $$$ to get this tested thru UCSF, and we are checking to see if Kaiser does genetic testing for this. I can't look too far ahead or my head starts to spin on the "what ifs" of this disease. I am learning to take just one day at a time, to enjoy my husband every single day and enjoy the incredible blessing of being "normal"...how ever long or brief it may be.

Nearing the end of interferon

We are nearing the end of a month of interferon. Cannot come too soon for me. This has been way more brutal than I thought it would be. Tuesday is his last infusion and I will be there. I have had an army of wonderful friends pinch-hitting for me taking him to his appointments, since I have to work. They have all hung out with him the whole time, talking to him, fussing over him and generally keeping his spirits up. What a blessing!! But since Tuesday is the last day after a 3 day break (we have an appointment at UCSF on Monday for a second opinion), he may get the shakes and chills , and for once, I'm going to stay home with him. He has been so cheerful during all of this, even during his worst moments. January and February have been really killer months, with the diagnosis, surgery and treatments. Barry starts radiation on Wednesday for 5 treatments, so that will take us to the end of March almost. Maybe, just maybe in April he can start back to work and start a bit of "normalcy". We also have an appointment with the oncologist on Tuesday and I'm going to ask about a repeat PET scan in April, to check the spot on his back. That will tell us if this is stage IV or stage III. That could be a turning point in this whole process. To say I'm scared is an understatement. I pray every single day, that this NOT be cancer....that it NOT be larger , or glow brighter, indicating cancer. I ask for all of you to pray this as well. I pray that the interferon not be futile, that it eats away at the cancer cells....that I have my beautiful, wonderful husband for years and years to come.

I have never been alone

This title has so many meanings. I have never been alone in life in two ways. #1: I went from my parents house to being married. I was never on my own. Never had an apartment all to myself. Never paid all the bills by myself. Never had to go to a movie by myself....Never had to make a major financial decision by myself. I always had Barry to go to for help, or before that, my parents. I blithely let Barry deal with all the mortage stuff, tax stuff, robbing-Peter-to-pay-Paul scenarios.....I just let him worry about it cuz he was better at it. He handled all the money...still does. My checking account pays for groceries, birthday stuff and Christmas...I do all the Christmas stuff with very few exceptions...and all the emergency stuff that comes up....like water heaters breaking, new dryers etc and also all the "fun stuff"....movies, out to dinner, etc. So to even think about my husband not being here to deal with all that stuff kinda freaks me out. He has all his stuff on QuickBooks....I have no clue how to use it. He keeps all the bills and stuff down at the shop...I never see any of it. When the computer breaks down, he fixes it. I know nothing about computers. I think I want a laptop cuz then if it breaks I just walk it into the computer store and have it fixed. No huge monitors or towers or hard-drives....I have just been so blissfully unaware of all this stuff. When appliances break, Barry fixes them or deals with the warranties and makes the phone calls. I have been so pampered in life. I just never realized it. Now I'm facing cancer and life alone after Barry. Not that he is dying right now....but the realization that its gonna happen sooner rather than later is daunting and terrifying. The thought of me dealing with house issues, taxes, finances, life insurance, car problems is overwhelming. Do you know how nice it is being married to a mechanic? I never had to worry about anything....smog inspections, water hoses breaking, insurance, registration....Barry took care of that. I cannot imagine my life without this man. Living on my own. To say I'm scared is an understatement. But here is the other way I've never been alone: God is always there. My friends and family have come thru for me in ways I never thought possible. God has a plan and there are somedays I'm not even sure what to pray for. I always ask that I get many, many more years of married life to this man, for health for him, for the cancer to just GO AWAY, but I know so much about this disease and every doctor we have been to looks and says "you know this is a tough diagnosis..." or something to that effect. They are NOT optimistic at all and always have this grim look on their face. That doesn't help me. Not that I want them to be all happy and perky, but hey...come one. Tell me SOMETHING positive....please. So I pray for a miracle. My friend from church lost her husband to cancer 6 months ago at a young age and she is going thru a terrible time....such a sweet couple...so in love. I look at her and think "there I will be in awhile" and I HATE that thought....hate it hate it hate it. But I just keep looking to the Lord to sustain me , and so far He has, as well as my friends....every step of the way. For that, I am truly thankful.

Interferon is tough to take

They warned us....they said it could be tough, but wow. I had no idea how brutal this would be on Barry. Its not like chemo. This is a five day a week, hour and a half infusion of interferon for one month and it has knocked Barry on his butt. The first day, immediately after the first infusion he got the shakes so bad he almost cracked a tooth he was shivering so badly. The nurses rushed to put mountains of warm blankets on him and the drive home was hard, even with the heat blasting at 80 degrees it was hard. The second day my friend brought a large "bib" that you can microwave and lay on him which was an enormous help. By then end of the week the shakes started to lessen, but he got raging fevers...one day it was 103. Then he sweats it off. Its so hard to watch. The first day after I finally got the shakes taken care of and he drifted off into sleep I went out into the dining room and just sobbed. He has a bit of reprieve over the weekend, but he is so fatigued, which is totally unlike him. They even had him start on Prozac because they said this can really get you down. Barry is in good spirits though for the most part. We have sooo many people ready and willing to help him out. I have to work (someone has to bring home a paycheck....which is a whole other story with Barry being unable to work) so my friends are pinch-hitting for me, driving Barry to his appointments since he is not able to drive if he gets the shakes. I have arranged for 4 weeks of people to take him, but it still bothers me big time that I can't take him. Its my husband, my responsibility, and I WANT to be there to take care of him, but I can't. I'm learning to let it go, but its hard. My friends have been absolutely amazing and they are so anxious to help and its my job to let them. One of the many, many things I'm going to be learning thru this experience. I sitll have moments of "I don't WANT to be alone...I don't WANT to be a widow this young...I'm afraid" but I also have to learn to just live in the moment and appreciate every single day. We have no idea how this will turn out, but being in the medical profession, I know how others have turned out and its not so good. We are looking into a lot of different things, but right now, just getting him thru this treatment is an odyssey all by itself. Crying is an every day occurence now...sometimes it helps, sometimes not. But I am still choosing joy, over everything else. There is still joy to be had. I still have my husband....He's still here. He's still here.

Roller Coaster

Wow....emotional roller coaster is all I can say. We met with the oncologist and he was pretty matter of fact, with no emotion. He came in and said with no emotion "Well if the spot on his back is cancer, then he has stage IV and the therapy changes drastically"....Again....blood draining from my face. Stage IV is the worst...very dire. Not to say that there is no hope, but the chances go WAY down. We cannot biopsy the spot because it is inside the vertebrae and to do so would mean drilling thru the bone to get there and thats not wise at this point. So....all we can do is wait 3 more months and do a repeat PET scan and see if the spot has gotten bigger, or spread to different areas of the body. Talk about scaring the pee out of me. So, I have all my friends fervently praying for a miracle. That the spot is NOT cancer. That if it is cancer....please God...you can change it. Barry has stage III right now, which is not great, but we have a fighting chance. The interferon starts on Monday for 30 days. We also are seeing a radiation oncologist tomorrow to see if there is any need for radiation on his surgery site because of all the cancer that was found there, into the muscle tissue. Do you know they removed 21 out of 34 lymph nodes in him?? I can't believe it grew so fast. Thats what scares me. I am cherishing every kiss, every snuggle , every word, every laugh.....The love of my life. He cannot leave me yet. I won't let him. Please God.....I need him for a long, long time yet.

The dream.....

After Barry got out of surgery, he began telling me about a dream he had before he went into surgery. It was about him wrestling and fighting with a guy from his past. This is the man who used to be his friend, who we rented our house to, and he turned it into a drug house and absolutely destroyed our house. He also stole thousands of dollars from Barry in many and various ways and stole our motor home (which we eventually got back). Barry was fighting with this guy, verbally and physically in his dream. He finally wrestled him down to the ground and started pounding his head against the ground. If any of you know my husband, he is a lover, NOT a fighter. He has never gotten into a physical fight with anyone in our married life. So him having this kind of rage is incredible. As he was pounding his head into the ground, the man "morphed" into a crab. This crab began getting the better of him, pinching him and ripping the flesh from his arm. The pain was incredible. But once again, Barry finally managed to wrestle the crab down and with a mighty blow...smashed the crab into the ground. After he smashed it, two tiny crabs came running out and scurried away underneath the ground. This was the end of the dream. The way I figure it, this dream was a "cancer" dream. The tropic of cancer symbol is a crab. His rage and helplessness was pointed at this cancer and he "smashed" the big cancer....i.e the tumor. Yup, thats gone. But the little crabs that ran out....Those are the little cells that are running throughout his body....where they will land no one knows. But they are there. And with God's help we are gonna get those little buggers and smash them to the ground as well. Keep praying!!

Cancer is a four letter word

Cancer. The word that strikes fear in the heart of most people. And I am most people. My dad died of brain cancer and my husband has just been diagnosed with melanoma in his lymph nodes. I lost one man I loved to cancer and I'm sure as heck not gonna lose another if I can help it. The more I read about it, the scarier it gets. I need to stop reading. I need to sleep. I need to cherish every day. The list can go on forever on things I need to do. My husband will go into surgery tomorrow to have this mass removed and all I can think about is how our life is going to change. A new "normal" will begin. When the biopsy came back positive my legs almost buckled. Being in the medical field, I know how these things tend to go. I know too much. The Dr. said there would be no surprises...he's going to go in and get the tumor and then we'll plan a therapy after that with the oncologist.
**So.....after the surgery....there was a surprise...a bad one. The tumor was much larger than anticipated. I kept looking at the clock during the surgery. The doctor said it would take about an hour. Well , an hour came and went...and went...and went. 2 1/2 hours later, the doctor came out looking grim. He said because the tumor was so large it took much longer than anticipated. That from his standpoint, he got as much as he possibly could see, touch and feel, but the likelihood that is has spread is 100%. He said it could be years, or months, depending. Nothing else showed up on the PET scan because what is in his system (blood or lymph nodes) is too microscopic to see yet. But he says he is certain it is spreading.
Sucker punch.
Blind-sided.
I could feel the blood draining from my face as he was talking. He kept looking at me, like he was waiting for me to faint. My mother in law grabbed my hand and kept talking to him saying "Thats not what we wanted to hear"....Thats an understatement. I felt like I was going to faint. After he left, I called my mom and my friend Ardys. My mother in law told me it was okay to cry....not yet....not yet. I have to process this first. I made my phone calls....then sat down, put my head in my hands and cried and cried. My beautiful husband....the man I love with all my heart, soul and mind....who loves me unconditionally, has put up with me and deals with my craziness.....has a shortened lifetime?? No...no....He and I have to celebrate our 50th anniversary. We have cruises to go on, grandchildren to play with and watch recitals and soccer games....What the hell? Now I was getting mad. Cancer was NOT going to take my husband....this generous man who denies me nothing. All I wanted to do was see him, hold him and tell him its all gonna be okay. When I finally got in there, the doctor had told him the news. He looked upset. I just held his hand and kissed him and told him that its gonna be okay. Its gonna be just you and me, and we'll fight this thing. Going home that night and crawling into bed all by myself was so hard....so hard. All I could think about was ....is this how its gonna be soon? The bed with no hubby to touch in the middle of the night? No one to hold my hand when I need it? To hold me after a bad dream? Not possible. I watched my mom to thru this and I sure as hell don't want to go thru that. Depression set in. Couldn't sleep. All I wanted was my husband home. He came home the next day, thank God. And then he told me about his dream.....