Tuesday, May 12, 2009

Doing a bit better...HELP WANTED, TOO

Hi Everyone:

I'm doing a bit better, so thanks for the prayers. There is soooooooo much going on in my head and so many things that God is doing in me. It's beautiful...It's beautifully painful...how about that. My desire is that I come home and it slows down, but God has not told me that. So, I'm learning about being exhausted in today without thinking of tomorrow's exhaustion. :) But I find that much has been stripped of me during these 2 years. I could go on and on and on. Yesterday I discovered that...well, you know what. I'll talk of that another time. I'm really just too worn out to go into it or do it justice. And what the heck. Who wants to talk about the ugliness of total depravity when the sun it out. And yes the sun is out.

BUT...Jim had to go up on pain meds because the neuropathy is just killiing me, and now he can't go to the bathroom for days, and we're back to THAT place. So we are not out enjoying the sun. However, I did get to drive to the drug store for an enema. But we're terrified to use it because of the seton history, so...

Update:::::::::

Next Monday, May 18th, Jim will have his final BONE MARROW BIOPSY of this trial. Thank you Jesus. He has demanded that he be put to sleep for it. He, too, just can't bear too much more pain of this journey. Anywho, then on Thursday May 21st, Jim will have an echo cardiogram, some other tests, and his FINAL PET SCAN of this trial. This is the BIG ONE. Will there or won't there be any residual cancer cells... The doc said there is a small chance that we will be able to get the answer to the test results that Thursday. And the nurse said that we could still come into the day hopt. and clinic the following Monday and Thursday, if we wanted, unless we really wanted to go home. HELLO....... Nooooooooooooo, we'll hang out for an extra week.....What are they nuts?

Anyway, if all things are well, we may actually be heading home on the 23rd or so of May. I NEVER in 100 years would have thought it was possibly considering Jim's condition, even 2 weeks ago. Now, if the PET scan shows there is cancer...well, I don't know what that is about, but I'm coming home anyway. I NEED TO COME HOME. We'll work on plan B then. I don't know what plan B is, and I'm not planning on plan B, but I'm coming home one way or another, and very soon. So, I'm figuring Jim's PET scan is just going to be clean. Besides, it's not like Jim's cancer hangs around growing slowly or something. We would know in a big way in a very short time, so.

It's still scary though. Jim had a temp the other night of 100. He has slight temps every night. Could be the GVHD. We know from the last CT scan, that it wasn't any swollen LN's indicating cancer, but the PET scan will be more thorough. Also, Jim's white blood cell count is still low, but climbing. NO MORE SHOTS of neupogen, which is really great for us both, but his platelets are NOT bouncing back. The docs say that his bone marrow might have just been too damaged from all the chemo and may never come back fully, so...let's just not go there.

Anyway, it's a bit scary to come home. Not in the "not trusting God" way, but in the "I may not be coming home to go to the gym, the cottage, and work in the garden, kind of way.

I don't want to see anyone for 1 month when I come home. I have put 20 pounds on since November. I guess that isn't too bad considering I had been sitting on my butt eating vending food machine for almost 5 months, but still. I'm fatter and I HATE IT. I'll see you all after a month of dieting and the gym...unless you want to come and clean...then you're welcome. ;) Aha, there won't be too many takers for that one. And I can't blame you. Actually, I will love cleaning my house and such. I bet mopping my kit and bath floors will be WONDERFUL...for the first week, anyway.

Someone had offered to turn over my gardens. I can't remember who, but GO TO IT. I have a rototiller in the shed and a shovel. Or you can wait until I come home. But you can't look at my fatness. ;)

But here's my real need and what I need help with. If anyone is passing through MD, close to Washington DC or Mechanicsville or within an hour drive's of 20659 within the next week, this is particularly put out there because maybe someone at your church or my church is on a business trip or something. Anyway, if there is, and you or they would be willing to bring some of our stuff home, that would save me 2 trips, or having to throw good stuff away, or leaving it behind to clutter Bob and Shelley's house up, etc. It's not the end of the world if it doesn't happen, but if it could and it's easy, give us a call. I can meet you whereever you are at. But you can't look at me. :)

Okay, I'm going now.
Pray that Jim can go Numero Dos.

9 comments:

Susan said...

Great stuff...praying for a clean PET scan!

Sam and Maddy Karpiak said...

Hi G & J:

Been thinking of you both and praying for you nightly. After reading this post, I wanted to share with you something that I recently came across for promoting good flora & fauna (it has helped me) and it's all natural. http://www.enzymatictherapy.com/PearlsLife/ It's called "Pearls". I noticed a difference in the texture and productivity of movements (trying to be delicate here). I sure hope I don't have to wait a month before I can see you :)

Take care.
Maddy

Rachel said...

Hello dear one,
I posted your need for someone to be traveling from D.C. to Pittsburgh on my Facebook page. I have friends scattered everywhere so I thought something might come up for you. I long to see you! Hope and pray that your transition back home is full of joy,REST and the presence of God.
all my love
Rachel

Anonymous said...

Hey, I've gained 30 pounds since I've seen you last, so forget your month rule with me!

Maddy, thanks for the "Pearl" info...going to have to check that out since it's still a lovely issue for me.

Gloria, tell Jim I feel his " potty pain" (literally sometimes), and I will pray for quick relief!!! It truly can ruin your whole day!

Love you,
K

Anonymous said...

I'm not even going with weight issue. I'm failing my Sister's request and believe me when I say I'm not happy with that.

Your private island at 724 will be ready for your arrival when NHI releases you 2. Mark says we'll get all your stuff moved back in out of the van, won't return till you call. Which btw he says be the next day with you saying "Mark help" and jimbob sayings "Mark where's my whatever"!

Joe B. says when he was working on the downspouts that you need one of those splash guard under it that rolls the water away. Gonna see if ace hardware has that for you guys.

Ok just hollar if anything else you need. I know you guys head to clinic today, and I pray all goes well and those blood numbers rise rise rise!
love and miss you both
with many prayers for you,
xo Sister

Anonymous said...

Okay after the end of May when my daughter gets married I can come clean your house with my handy dandy steam cleaner. It is so cool. I am in the mood for mindless labor and I would love to help someone. I feel like I never help anybody so I can take that out on you:)

Nancy

will keep praying

Anonymous said...

Hmmm, before I post new, I want to respond to a few of you guys here.

Susan, thanks for the prayers. Jim's getting better, but still needs a lot of them. Someday, I hope to connect with you on a more personal level, but right now, I'm more interested in isolating and sleeping like Rip Van Winkle...but that's really hard to do for me, because I can't sit and don't sleep well. So... Anyways, thanks.

Sam and Maddy: Thanks to you, too. I actually take that product that you mention. Jim can't even have green tea without a doctors approval, but we're both doing a bit better. So, thanks. And, again, so glad about Sam and some normalness for you, after all his chemo and such.

G & R: Thanks for the post. You are a dear friend. Wouldn't it be great if Jim wasn't well enough to go back to work, but was well enough to travel to CO. We could see you guys and some other family. Dream on...

K.....YOU ARE SOOOOOOO NOT OFF THE HOOK FOR YOUR SMART ALECK COMMENT ABOUT 30 POUNDS.

For those of you who don't know K, she's one of those willowy thin forever types. SHE'S PREGNANT AND THAT JUST DOESN'T COUNT. I could not fit into her maternity clothes. Nice try... ;)

Sister... my private island, huh? I'm not so sure it's going to feel like the oasis I need, but I'm ready. Thanks. I'll send you a food list shortly, once I know for sure.

Nancy: I didn't know you're daughter was getting married. Wow, have I been gone for a long time. Congratulations. I heard our new pastor on Cd refer to the VSkle wedding, but I was thinking maybe you and Phil were going to get married again, but that didn't seem like you, so I thought maybe it was a joke or something. I did think about your daughter, but didn't she just go to college? I don't know. Anyways, Congratulations. Oh, and you'll have to wait until June to help me clean because I am hiding for a month. I threw away all my "fat" clothes. ;)

G. B.

Anonymous said...

Okay, admit it, for a moment it made you laugh (or at least smirk) :-)...and now you are officially my new best friend because NO ONE in my entire life has ever used the words "thin" or "willowy" to describe me. I was always content with "average".

Just so you know, though, there isn't a soul alive who cares how much you weigh right now (except you)....we'll just be happy to see you whenever you're ready to be seen.

Love,
K

Anonymous said...

awww shucks, thanks K