Happy Father's Day - and an open note to my friends

Hi Everyone:

Happy Father's Day, if you happen to be a dad.

And Happy Father's Day to my Jumbo who is a wondeful blessing as a father to John. (Hi Rubs. I love you and miss you. It was great having you home. Thanks so much. Can't wait to see you next time.)

Jim's blood levels this week have gone up a bit. Keep praying for TOTAL healing. They took, Jim off of Sirolimus because he had developed Sirolimus toxicity. They then put him on Cellcept, but this new medicine is causing him WORSE neuropathy. They can't give him any other type of immunosupressents, as he's tried them all. We're not sure how long he will have to be on these. I watch him try to do something like use clippers, and it makes me cry for how hard it is for him. And yet he is doing, so... His nausea from the medicines has been very bad the past week. Thursday at the doctor, he threw up, and they gave him some IV kitril to help with that. The NIH Fedexd some amoxicil... and took him off the doxycylo... because of the nausea, so the past 24 hours have been much better in the nausea department. We are awaiting word on the biopsy for GVHD, however we don't really need that confirmed to know it's what it is, but the docs said if they had a definate diagnosis they would put him on prednisone, which would be easier than putting cream on his whole body. But who wants to be on prednisone, either.

We are having papers filled out for the Long Term Disability. It's time they start asking questions like, "Can you dress yourself?" Can you sit? Dear God, please PLEASE, don't add fighting insurance companies to the long list of things I have to do.

We leave again this week for the NIH. If Jim's platelets are improved, they will remove his tooth in office (prayers are needed for that, because his platelets are still tanked, despite some improvement). Otherwise, they are going to admit him and give him a platelet transfusion, so they can do the tooth surgery. I hope there is room at the Lodge to save some money, but they can't reserve me a room because it's not certain what is going to happen. I hate the idea of driving back there again, so soon.

My (Gloria/Dolly)dear friends...those, I haven't had the time to call or write back, those who care about me? Well, Friday, I cried all day, over all things. Cried some on Saturday, too. Oh, and a bit today so far, too. I am spent. I am exhausted. I am hurt. I feel very alone. I feel abandoned by some of the most important people in my life that I have loved, despite needing them the most. That hurts the most. And I struggled with not assuming things. I am having a hard time looking at some of my relationships and thinking..."what a joke." I am fighting the slippery slope of depression, but oddly, I don't think I am depressed in the clinical sense. Today I visited my father. He didn't recognize me. My poor dad. It's so sad. I am just so sad for so many reasons. I continue to press into the Lord for my strength, to ask him to help me see the love I can't see or feel, to protect me from the evil one who wants to capitalize on my exhaustion and my hurts. I think I'm in a good place with that.

I was reading some literature about Stem Cell Transplant, and on the pages for the caretaker, I had to watch my "expectations and perceptions" (Maddy). There is so much info there about how hard this will be on me, and it never includes the 20 months of sickness before the SCT, the broken down house, and my own health. I think I have a Morton's Neuroma on my foot, probably from all the driving and walking and pushing Jim around the NIH. I remember in February, crying while Jim was in the hopt, because I was in a strange city trying to find cheap good shoes, shoes because my feet hurt...shoes on sale, because everything is so expensive. Well, my foot is in constant pain, and I have no time to get to a chiropractor, or pediatrist, etc. My annual gyny and mammogram appt., the once a year only appt, that my sister made for me 4 months ago, I have to cancel, cause it's in conflict with Jim's NIH appt. I finally got to the doctor, (my front tooth chipped, and I have cut my tongue on it for 3 months while in MD) well, he filled it in, but it wasn't done properly, and now my tongue will get chaffed for the next month or so, until I can get there again. I could go on and on and on and on. So, please pray for me. I have spent more time dreaming of heaven than I should. Obviously God wants me here, as I am here, but I really don't want to live this life anymore. I feel so numb to it, and it's not because my desires are not being met. I no longer have many desires. And I feel bad about that, because I think life is a gift that God has given to me. It's just so constantly hard and has been for so long, and no one even begins to know what we have been through. I mean...who wouldn't want heaven rather than this.

Last night, Jim and I sat on the front porch. We had our binoculars and looked at the local birds feeding at the feeder. It was really nice. I still laugh. I still want and need....??? And I love my God more than ever. But something is missing.

Many many years ago, coming out of denial about sin, self and in particular, that life wasn't about me and me getting everything I dreamed about...lol...I remember how sad it was that I couldn't go back into denial. I thought that as long as I could feel HOPE for the future of my life getting better, at least that was better than the reality. Do you remember that time? Almost like when as a child, you found out there was no santa and how the magic was gone. I remember even trying to convince myself that there was a santa, to go back, but there is NO GOING BACK once we're out of denial. And we adjust. Well, I feel like that all over again. Like, I came out of something, like when I came out of denial. But I don't know what it is that I came out of. And there is no going back, either. All of a sudden, it's like I see even clearer how fallen this world is, how fallen I am, how catastrophically fallen ALL of this is, and the only TRUE HOPE, PEACE, LOVE, acceptance, rest, joy blah blah blah is found in God/Jesus/Holy Spirit, and like the good book says, we experience a taste here, but will taste in fullness when we are with Him in our REAL HOME. Soooooo, once again that's where my hope is. So, doesn't it make sense that I wouldn't want to be there now? I used to have dreams all marked out. "Some day Johnny and his wife and my grandkids will......" some day, me and Jim......... some day I hope to ............... I don't have any of those hopes anymore. They wouldn't come to pass if I did.

I ran into a friend at the Shop and Save. He works there, and I asked him how his photography was going. He gave me his card and I checked out his website. There were wonderful pics of England, Alaska, our skyline, Italy, the Carribean. Last year's superbowl...etc. I thought. "Wow, sounds fun to be him." BUT. If I could swap lives, I wouldn't want to trade. There wasn't any jealousy (amazing for me...Italy????come on...but there wasn't.) But what is weird is that there isn't any desire for anything.

Well, I am sure I am far off track by now and rambling like crazy. I don't know what is going on. I'm sure it's more of God's work in me, but at the same time, who is this "me?" But hey, pray for me, whoever I am. Jim really really needs me. I don't need me, but Jim does. I really am exhausted.

Me

(Rachel, no more than any other time in my life do I wish you still lived in PA. :) Sorry, I haven't written you back. I'm still here though.