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Showing posts from 2010

Long time no see!

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It has definitely been a while since I've had the time to sit down and write about what's been going on which is a pretty good indication of how things have been going. December has seen an art show, an assignment shoot, a portrait, a wedding, a bunch of church events and friend get-togethers and frankly, the hand hasn't been much of a hindrance which is fantastic! The phantom feelings have subsided as a pervasive experience and now are more of an occurrence when I try to make a fist or am doing something that normally would include that finger. Just the other day I was holding my phone to my ear with the left hand and it seemed like the missing finger was holding it at the top to stabilize. Madness. Occupational therapy has started and is going well. Macy, the therapist , is a fun torture artist that's been taking care of my gimpy finger and hand and that deserves further explanation. It all started out with a look-over of the situation. My hand was pretty stiff, the

The Phantom

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Hello again! I'm not dead, I'm just being haunted by the ghost of finger past which is actually fairly manageable. As I type this I'm using both hands at varying degrees of proficiency. Let me tell you it is really stinkin' weird. The past several days I've been off pain medications completely which may explain the spike in feeling the finger that is not. My senses are apparently so familiar with the ghost digit that my brain is still trying to press keys with that finger. This blog is actually the first time I've tried typing properly with all the fingers I do have. Previously it's been just my thumb or pinkie for various letters or pressing the shift button. Cool. :) The sensations are sometimes tingling, sometimes normal movement sensations, sometimes the feeling that it is asleep, and sometimes it just throbs a bit. It is intermittent but more frequent, again probably correlating with more mobility and lack of pain inhibitors. Touching the remaining fing

The Week (or so) After

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Wow. This past week seemed like a month. It couldn't have helped that I was on hydrocodone & tylenol while still dealing with head area pain that may mean a trip to the dentist is overdue. Oddly enough I never felt "high", I just knew I wasn't at 100%. The volume of travel also surely contributed. We got home from MDA last Wednesday and on Saturday drove up to DFW to see an Aussie friend I hadn't seen in ten years as well as go to a Dallas Stars hockey game together (thanks Andrew!). That was after we grabbed some texan steak and toured Daley Plaza to see the grassy knoll. It was an awesome time but I wound up developing a 101F fever that night that prompted a call to MDA. Thankfully it seemed unrelated to my hand and after a restless night, it dissipated later on Sunday morning. I took it pretty easy as a precaution and though we went out for BBQ (thanks Mom & Dad!), upon getting home I was back on the floor resting. After that it was time to return our f

one man, seven fingers, two thumbs

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Yes, that's right, my business name now has another tie-in to me. :D I just realized it on the drive out of Houston and was very pleased. Typing is pretty stinkin' slow for me at the moment so this will be short(er) than it could be. In fact , I may just post a number of photos from different parts of the past few days to make up for it. My hand feels pretty good, all things considered. Keeping it elevated and keeping up with the pain med scheduled helps. I also find it useful to just touch and move my fingers with my right hand to control the movement delicately. The "phantom" phenomenon is at at play too which is interesting. The aforementioned touching and moving of those remaining fingers helps dissipate that phantom feeling but it doesn't seem to completely clear it. Part of it may be that I have dressing spacing my ring and pointer finger and that simulates the middle finger presence but the other part is probably just the fact I've always had that finge

Pain Level..about 8 :-( but we got drugs :-)

As soon as I published the last post the volunteers came and got us; both Amber and I were able to go visit my adorable husband in recovery, yay! I immediately counted fingers when I got to him...they took the correct finger and only the correct finger and yes Eric did ask to be sure. We were told that we couldn't have our phones on back there but they didn't say anything about not taking a big D90 camera so I snapped some shots. I showed Eric what his bandaged hand looks like and counted the fingers and thumb for him. (I wish I could show you all now but due to techinical issues I am using a guest computer in the waiting room and can't get the pics downloaded right now, but we'll post them soon.) Anyhow, Eric is in quite a bit of pain, just before we went back the nurse had notated his pain at about an 8 and had given him some pain medicine,I already forgot exactly what it was. He does have a morphene drip that he is using, it only takes his pain down to about a 5

The Trade- One Finger for One Long Life- Done Deal

So the deal has been done. We traded the finger in for life, when you think of it like that, it's totally worth it. I am functioning on very little sleep so if this blog even makes sense we will be doing good. After a slow journey to Houston last night we finally got to bed at my cousin Chris' apartment around 6 a.m. So when MDA called at 8 a.m. we got up and our brains barely even on. I called my sister and Lord led her straight to us, any of you that have encountered Ambers lack of directionality would know that her getting to MDA without getting lost or even taking a wrong turn is a miracle. Heck Eric and I couldn't even do that the first time we came :-) As we waited for Amber to meet us at the entrance Stephen and Lisa Brown walked in. Such a cool gift from God for us to have a moment with them. They have been fighting a tough battle with cancer for years now. I am so humbled that as they face their own battles they reached out to us to lend support and encou

Bumped up

It's looking like things will be starting early. There was a cancellation and I got a call at around 8:15a asking when I could be there. I said about an hour. It's go time. Lets get this over with! Gotta run! Peace & love homies!

Good times

The time is getting closer. Houston, prepare for takeoff. Soon I'll be unable to eat or drink (plain ol water is also banned) until after the surgery which could be 2pm tomorrow. I'm also barred from using deodorant. Why, I have no idea but it'd your olfactory senses that'll be offended doc... I'll try and not get sweaty. Today was a pretty great day actually. I got to play the kit for church, got to relax with some football, hang with some of the best neighbors ever for small group, see the Cowboys actually win a game, and to top it all off, jam out with Paul, Charis, Britain, Roger, Holly, Karen, Chris, and of course Brea. Hand percussion won't be easy with a healing hand for at least a month or two I imagine. It was good to say farewell to the finger by using it to play some stuff for the big G. Just in case things move really quickly over the next 24 hours, I want to say thank you to all of you who have been encouraging, sending sympathies, and laughing with

Dear finger...

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Hey finger, it's me, the rest of your body. How's it going? I'm doing pretty good... So hey, it's a pretty rough economy out there and I'm afraid I'm going to have to let you go. No no, I know you've tried hard and been a part of this organization for nearly three decades. No, it's not going to make a difference if you cry. Look, you look pretty ok on the outside but you're like a cancer on the inside and frankly we don't want to lose any more employees to stuff you started. I don't care if it is hereditary and you didn't have a choice, maybe you did. Look, on principle, I'd love to keep you but the fact of the matter is that you're causing trouble and we're in danger of losing one of our biggest clients. Yeah, Hasbro, the owners of Life. So yes, it is a big deal and yes you have to go. Sorry. You and I have had some good times together though. Typing, climbing, drumming, shifting mountain bike gears... I'm sure I'll m

Love and Peace

Yesterday as we walked around the medical center I said to Eric "I just love getting to spend the day with you, even when it's under these circumstances, I just love to be with you." At the beginning of this whole ordeal, before we really knew what we were dealing with or had told anyone, I was scared. Scared that this man that I love might not be here with me for all my days. I know that is selfish but the truth is that I'm just selfish. I knew that if this ended up being the absolute worst case scenario it meant that he would be with Jesus and no longer trapped in a fallen world with pain and sickness and I would be without him. The thought of outliving him had crossed my mind in brief moments other times in our marriage, not because of anything in particular but just because I think about all kinds of things randomly, and I would think "I don't want to imagine that, I sure hope I never have to live it." But now, as I sit in the waiting room as h

No Patch Adams

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Wednesday's appointments went smoothly for the most part, which is nice. :) I say "for the most part" because as we were reviewing some details right before meeting with Dr Lewis, we got a little scare of the sort that you really wouldn't prefer as you're about to be partially dismembered. One of the assistants was going over the paperwork and part of that was confirming the nature of the procedure. "Left hand, 4th finger" was what we heard. I didn't have time to respond with what surely would have been a "ha! the 4th finger is somehow the left middle finger right?" because Brea jumped all over that really quickly. "No... left 3rd finger..." There were some awkward stares back and forth. The paperwork all mentioned the 4th finger or, in some places, the 3rd and 4th finger. Whatchu talkin' 'bout Willis? -----> She said she'd go check. A few minutes later both the initial assistant and another show up. They double

If I was an astronaut...

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...I'd probably be sequestered and reviewing the mission objectives. As it stands, I'm not an astronaut but tomorrow does mark the beginning of the final battery of tests and consultation before Monday's surgery. More information should be available by tomorrow evening so stay posted. We're getting down to the final lap. I've got a couple reminder bands that actually work pretty well together when you discount the fact that the AO one is from my frat's 50th anniversary. Living strong thanks to the foundation . I'm finding myself trying to figure out how to keep working while I'm partially incapacitated and it seems at this point that the best answer will be organizing and hopefully selling prints of photos I've already taken. I'm just not sure how loopy I'll be post-op. Previously I've only employed the hydrocodone prescription lightly after the procedures like my wisdom tooth and tumor removal but I'm wondering if after getting my ha

The Valley of the Shadow

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Well folks, the time approaches. Although not totally light and airy, it's not horrible either. I've got dates set for the ray amputation of my leftmost most offensive finger. The world will be a better place. :) I'd tell you to set your DVRs but I'm pretty sure the surgery won't be on broadcast networks or cable. It's still going down though. November 15th. It is the same day that back in 1492 Christopher Columbus notes the first recorded reference to tobacco (speaking of cancer, kids, don't smoke or chew). Also in 1904, King C Gillette patented the Gillette razor blade (I don't know if he also invented or made scalpels...). But that's not all! On November 15th in 1960, the USS George Washington, the 1st sub with nuclear ballistic missiles, launched. To top it all off, it's also the day, in 1969, that Wendy's Hamburgers opened. Now add Eric getting a finger lopped off to the list in 2010. I say "lopped off" which really is quite cr

Consensus: Not political (thank goodness)

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I'm a little late in posting this but here's what's been going on... Those questions that we've been compiling were mostly answered back on Monday afternoon when I was able to talk with my doc on the phone. The bottom line at this point is that what I'd suspected and been preparing for (the finger being taken off) is the consensus not just with Dr Adler and Dr Lewis, but with every other person with cancer experience that has been asked. I'm blessed to have very gracious and concerned friends and family who have made inquiries all over the place to see what other professionals and friends with experience think and all the replies have confirmed that taking off the primary location of the cancer offers the best chance of killing the disease before it gets out of hand. With that being said, of course there still aren't any guarantees, just probabilities. It's a somewhat somber reminder that despite all the stunning advances in medicine and science, there i

Questions...I want to cover them all

Hello! Brea here this time. I'm typing up a list of questions to ask the doctor. We just want to be sure that we fully understand the situation as best as we can before actually beginning any treatment plan. We are pretty sure that we will be proceeding with the radial amputation but again we just want to be thorough that we have asked all the questions we can so that our decision is as informed as possible. I mean who really wants to set an appt to "give cancer the finger". So this is what I have right now, I'm sure there are other and better ones to ask but I can't think right now so I thought I would seek help from whoever is willing to offer it. Based on what you know from following our blog, which is pretty much everything we know, what questions would you ask, or in the case of some of mine, ask again? I know that some of mine are kinda stupid or redundant but I would rather look stupid to one of the best doctors in the world than not have the peace of

I've been called indecisive before...

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...as it turns out, my tumor is too. :D I got a call from Dr Lewis again on Thursday afternoon and she let me know that after that review back on Tuesday they're still not 100% what to call my sarcoma, other than sarcoma. She said it showed more of the characteristics of low-grade sarcoma but apparently was throwing them for a loop on the precise diagnosis. In retrospect, I should have asked what characteristics made it so ambiguous but I should be able to call back and ask. But here's the kicker: I apparently have two options for treatment at this point with a third that is often suggested by us non MDs but probably better in theory than actuality. It sounds like the Dr Lewis was still leaning towards just doing the ray amputation because it's the safest option overall in regards to cutting off (no pun intended) the source of this low-grade(?) but still nasty cancer. However , she did say another option at this point would simply be "close observation" which I su

Smiles :)

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Hey there friends and family! So you know that good news you've all been waiting for? I think some of it came in more officially just a few minutes ago... Dr Lewis called and said that the pathology of the tumor that they (MDA) performed seems to suggest that the diagnosis be downgraded from synovial sarcoma to a low-grade sarcoma (less aggressive). The implications of this for that finger are still not clear because it was found at the margins of the biopsy (the tumor that was cut out) but with all things considered, it's still great news. So what's going to happen next is that Dr Lewis is going to go to a sarcoma conference tomorrow and maybe call Dr House (I kid) to confer with her fellow associates and (I'm pretty confidently assuming) experts in their fields. She may call me back late tomorrow, I may call Wednesday, it all depends on what all may happen with the conference and some other lab that is coming in that I forgot to ask about. So needless to say Brea and

Good news?

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This is just a quick update because we actually haven't heard back from the doctor yet. I did, however, get the MRI report and disc of images. Without a medical eye for this, I have no idea what this actually means but it sure sounds good! Here are the "impression(s)" from each of the reports I have so far: Ultrasound - Unremarkable left upper extremity ultrasound without evidence of pathologic adenopathy or mass. X-ray - Negative chest CT - No evidence of metastatic disease MRI - Presumed post-surgical changes with no definite residual disease. It would seem that this means that my condition is not very advanced which would be fantastic... but this isn't official word from the docs so I'm not holding my breath. :) Still, with nothing jumping out with alarm bells, I can't help but think that prayers are being answered. So maybe we'll hear from MDA Monday, maybe... either way I'm not worried. It's the weekend baby yeah!

The radiologist held me up! I kid... I kid...

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Yessiree, it's me again. Yesterday involved a rocket-run back to MD Anderson for the last piece of the diagnostic puzzle for now (Lord-willing). That MRI that's been talked about everywhere (aka, this blog) finally happened. At my very first MRI I have to say it was pretty much what I was told it would be and aside from my arm falling asleep on a first pass and my neck cramping on another, it was pretty cool. There was the jackhammer, the nuclear meltdown warning honk, the whale song clicks, and what I think was the machine playing duck-duck-goose without ever getting to said goose. I got in at 4:15p to check in and by 4:30p they had me in scrubs and waiting to get the IV line in. I lost track of time after that because of all the magnetic stuff going on, I couldn't bring my phone or watch with. National Geographic is an awesome magazine by the way. It'd be fun to get some photos in there actually. Perhaps I'll get to working on that... Anyhow, I finally got called

Just chillin'

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Since I last posted the main thing that's happened medically is the ultrasound of my left shoulder and upper arm areas. It was pretty cool actually. The monitor showed what looked like a moonscape at times and I could see strands of glands and sheets of tissue and muscle and whatnot. Maybe I'll be able to get copies of those images and show you what I mean. But yes, that has been the extent of progress to this point. Coming up tomorrow is the next bit of fun, the MRI. This'll be a first for me and as the comedian Stephen Wright has said, "I'm gonna have an MRI to find out whether or not I have claustrophobia." Well that and whether or not there's any sign of cancer in the more important parts of me. :) While trying to find out anything more about the timeline of things post-MRI, I sent in an email to the docs and got the folllowing reply: " I spoke with Kristi, Dr. Lewis' PA and we are not going to schedule you for a follow up appointment at this