An odd way of becoming thankful

Well, I've stayed away. Why? Oh, so that some readers wouldn't be tempted to think, "How could Gloria be so down. She has so much to be thankful for." :-P~~~~~~~~~~~~~~~~~ No kidding. But I arrived there, of course, in the non-conventional way. The gist of it was this.

I became thankful as I realized that I was blessed to have a great mother. I wouldn't be missing her if I hadn't. I am blessed to have my beautiful loving father all these years. I wouldn't be missing him on Thanksgiving if that weren't so. I am blessed to have my dear sweet son for those wonderful 18 years. I wouldn't be missing him so much if it wasn't such a joy to raise him. So, I guess you can tell that my holiday started out with me feeling so sad about missing so many people in my life. I have no idea why this started. But then I realized in order to be missing so many wonderful people, I had to be blessed to have them in the first place, and then I was oh so thankful. But the icing on the cake was realizing that I didn't have to miss my husband this Thanksgiving. Because he was sitting right besides me. Thank you Jesus. Thanksgiving was wonderful. That leads me to tell you that, believe it or not, but we go to the NIH next week for Jim's 9th month PET scan. 9 months of being cancer free. It still amazes me. I can't wrap my ahead around my day to day life. I still feel like I am living some weird dream and some day it will all be over.

I think mainly it's because Jim still struggles with extreme pain. June and Jerry (family) were here today and could see Jim's squirming and could see he was in pain. I felt bad I "forgot" or wasn't as aware of it as they were. I hate that. But I still don't know how to live every moment, and walk in peace, while he's in extreme pain. What if God doesn't deliver Jim from this? Will he be in pain forever? Will I then be a freak forever?

Who knows.

I am a micromanager of micromanagers. I'm a nanomanager

Hi Everyone:

Not sure if a nanomanager is a word or a Dollyism, but it is what it is. I watch that nurse and tell her what to do and show her how to do it. LOL. I know she loves me. Oh well!!!

Jim's wound is doing wonderful in comparison to the first day. I'm ready to fire the nurse, as I'm better at it. Isn't that funny. Today it looks a little red around the edge, either from healing or the beginning of an infection, we're not sure, but I'll be on it.

It's smaller in depth, and the tunneling is starting to get smaller, so this is good. The pain is much better for Jim. Today we did it with no pain pills and no rag to bite down on. He's a trooper.

I'm amazed at what God has done in me. I have gone from a person who says, "I don't do body fluids" to being someone who was puked on 3 times a day for 7 months, to wound healing, to setons, to blood transfers, to stem cells, to....on and on and on. It amazes me.

Okay, God, I'm done. :) Funny how I continue to seek God's will for my life every day, every hour, and then tell Him what I do and don't do.

Jim has a cold right now, or sinus infection or??? All I can think of is, "I hope I don't get it." Seriously. I have to drive him to the NIH, and we plan on going to Bob and Shelley's, and I can't afford to get sick.

Oh, and this is serious, God. I don't do Phlegm.
:)
Gloria

Boo Boos

Hi everyone:

Well, thank you so much for writing and letting me know you were praying for me. That has given me much encouragement. I'll bullet point all that has happened, as a shorter way for me to get it out there.

• Kristen read the blog, and her husband is in physical therapy and has in the past packed wounds, so he came the following night. I felt I wasn't doing it right, and I wasn't, but I wasn't doing too bad either. Larry cleaned and packed the wound, and was quick. He then gave us instructions on what to tell the doctor, IF THE DOCTOR EVER CALLS US BACK. The wound was starting to tunnel, and this isn't good. Larry jammed that packing in there. It hurt, but it was good. The wound did not look good at all. He also told us to consider a wound care center at AGH.
• I called the wound care center at AGH, can't get in until the end of the week. Called NIH, they will do it, but we want to look around here first, cause we would have to live down there for a while...again...no thanks.
• I called Mercy hopt., and they didn't have an appt. until this Wednesday, and yet, here's how God worked. This nurse answers the phone. She's cold and stoic, and I'm nervous and rambling. She says the earliest is Wednesday, and I said, "Can I leave the packing that Larry put in there in there until Wednesday, and she that I couldn't, and I told her I just didn't know how to do it. It needed changed twice a day and Larry was willing to come every night, but what about the day. She said, bring him over and I'll do it.
• She never smiled, seemed cold as ice, but was moved to take care of Jim's wound. Not only that, but she showed me how but said, "YOU SHOULDN'T HAVE TO DO THIS. YOU SHOULDN'T HAVE TO KNOW HOW TO DO THIS." Thank you for that validation. After the past 2 years, I know I can handle stuff, and I was doing this, but I was doing it wrong. So, it was good to hear that. Anyway, she said that she would do it if I couldn't, but if I felt I could, she gave me all the right material to do it. She didn't charge me. She didn't even take my insurance card.
• So, today I am going to do it. It's hard for Jim to go somewhere, because often times that's all he can do for the day, so we hate to waste it on another doc visit. So, at 2:00, I am going to do it again. This will make it my 4th time, but I feel confident about doing it, but I am going to have to jam it into the corner that is closing off and that is going to hurt, so continue to pray for Jim.

She said that it will take 4 to 6 weeks to close up. So....I don't think I'll be putting up any lights this year. (wasn't going to anyway) NO CHRISTMAS CARDS EITHER....AWWWW, Now, I'm really disappointed. (yeah, right.) :> So, I'll keep updating all my prayer warriors out there. Thank you so much.

God works it all out. Some would say, "Yeah, well a better "work out" would be to not be in this position in the first place. But what if he's calling me help wounded people some day. I wouldn't be prepared. I just have to think of it that way sometimes. "Dear God, please don't call me to wounded people some day. I really stink at it. :)

tears are dry, and we bit the bullet

Well, we did it. I went and spend 40 bucks on supplies. You need a prescription for saline solution (why not think of that, Dr. Death?) so I had to use contact solution. But we did it. I hope I packed it enough. Jim took 3 pain pills and right now is talking rubbish. He bit into a washcloth, and taking the old packing out was, as he said, one of the worse things he has ever felt. I hung up on poor June as I walked in the door, and he was standing there with blood all over the place. (he showered and removed it. glad I missed that part.) Anyway he's standing there in the buff with my towel (white) covered in blood. Nurse Kimberly was in the kitchen, waiting for him to get clothes on. Thanks for doing the dishes, Sis. And we did it. I hope I got enough packing in there. I did the best I could. I almost stopped in the middle of this crying, "I can't do this." But I did it. There done.

Yall can rest now. I am.

Now, I have to repeat this tonight. and tomorrow 2 times, and the next day 2 times, and....sigh...

typing through tears

Jim had surgery on a cyst that ruptured on the back of his leg, that was majorly infected. Doctor Death left a 3" gaping whole in his leg that I am supposed to change the dressing on twice a day. I was with him in the room during the surgery, and after 5 shots of Novocaine, he only almost broke my hand off, the pain was so intense.

What came out, wasn't pretty. AT ALL. There was so much infection, that it's so painful for him. They gave us 2 pieces of gauze and 1 sterile Q-tip. No written instructions, but told us to do what it is the nurse just did, most of what I didn't see cause I was looking at Jim and praying for him. I am to change the dressing and to take the Q-tip and shove it into all the hole and pack it, and then cover it. They said it WOULD NOT be painful to change the dressing. THEY LIED.

YEAH...WELL, EVERYTHING THEY SAID AND GAVE IS NOTHING. Directions online are totally different than theirs, and And he's already on pain killers for the neuropathy, and they don't help any pain.

Last night I started to pull the gauze out of the whole, but he screamed it hurt so bad. So he went into the shower to wash water through it, in case some dried and attached to the inside of him, and I still could not take it out. It's now going on 24 hours, and who knows what's going on in there. I have blood on 2 rugs, and I'm shaking from the fear and frustration. I feel like I have finally just reached my limit; a limit that has been reached how many times. I just can't take another day of health care. It consumes my life and has been for 2 years now. And that's just too bad now, isn't. God's grace is sufficient for me. And in that there are...well, that's not for everyone, as I don't think many care about all aspects of what's going on. Friends and family that have been able to hang in there with us know and we've talked through it. If you haven't, I understand that our life is very intense for you as well, and that people just have to pull away. It's too intense for me. We do get that. It hurts, but it's all part of this beautiful purging that God is doing. I know many of you are praying as well. But thank you to the couple of you who have been faithful in letting us feel your love that has been so lacking. Without you, I think we would have abandoned ship. Whatever that means.

I'm done bleeding now. Back to the patient. He's bleeding, too. His platelets are VERY LOW. 40. So, he's not clotting and it keeps bleeding. Can't get nurse home care, and the only doctor who does care is not on call, but replaced by Doctor Death, who I wouldn't take my dog to see. I called my niece who is a nurse, but we think she's on vacation. Yes, one of my best friends is a nurse, but she hasn't called in 6 months. It's just part of the purging.

Just pray for us. I could possibly see us having to leave to go to Maryland so that they can attend him down there, and the thought of that makes me want to just crawl into a ball and cry. Worse, is them calling with instructions for me to do it. Another holiday in Bethesda, who cares. Another drive, who cares. But how do I get him there when he can't sit on his leg???

If I have to do it, pray that I can find the supplies. I went to the drug store, and they didn't have sterile Q-tips, but you can find 49 shades of blush and 100 shades of eye-shadow. 2 aisles of candy, 1 aisle of cards, and 3 aisles of Christmas decorations.

Pray

US

November update

Hi everyone:

Jim continues to live.

Um... Yeah. So, this is good. :)

We go to the NIH December 3rd or so. We are hoping to visit Bob and Shelley and family as we miss them. The trip is still very hard on Jim, so we'll see. It's odd that adding 1.5 hrs of travel each way could make a difference, but it really does.

This trip will be for lots of tests and such, including the big one, the PET SCAN. That is the 9th month pet scan, but it's closer to 10 months. Pretty amazing, huh?

Problems? Yeah. Jim's getting surgery tomorrow. A fatty tumor has gotten a lot larger, and has needed removed. It now has grown larger with infection. He had it lanced 2 days ago, and it's so painful he can't sit. And it's so red, it's scary. Pray he doesn't bleed cause his platelets are very low, and a little scratch can bleed on if he's unaware of it. His toenails are dead. Who knows why. The GVHD is pretty bad on his legs. And he's still in extreme pain all the time. There is no break from it, and there is no rest for the weary. His spirits are good. He is an amazing man in that department.

John and Leah were here for a visit, and I could cry for the help they were to us. Thanks guy. They pulled out of the driveway, excited to get home, and I get that. And yet it feels so heavy and lonesome for me, as I really miss them.

Our grand neice is out of the hospital and able to hold down water. She has DS, and has really been on my heart. I'm so glad she's doing well. God bless you little one.

Bible study is going well.

My sister just had her uterus biopsied. When we went to the cottage and ended up at the hospital 2 months ago (story posted), things still have not been resolved. She's getting cancer blood screening, and now we wait. Again. I can't even go there.

Have a Happy Thanksgiving everybody.

Jim and Gloria