Genevieve's PSC Journey

Fab!

2011-12-02T09:14:00.002-06:00

Just a quickie to say: all my 2-year tests came back AWESOME! Blood work, chest x-ray, liver U/S, CT, and MRCP are all ~normal person~ normal--wahoo!! This definitely reflects how I've been feeling.

Life is getting incredibly good for me again. I have been happy, peaceful, and serene; I'm finding joy and humor in places where I haven't found it in a long time; I have more patience and less frustration; and By God this this spirituality stuff (involving a Higher Power of *my understanding*) really seems to be working out for me. What I'm doing is working, so I think I'll keep it up.

Some Sappy Crap.

2011-11-10T17:38:00.001-06:00

Two years ago this afternoon I was napping on my parents' couch, depressed, tired, and sick, getting more depressed, more tired, and sicker as each day went on. I had been called for transplant four times, the most recent no-go having come just days before, and, despite having been listed for only 6 months, beginning to wonder if the life-changing surgery would EVER happen for me. Around 3:30 p.m. on November 10^th, 2009 my phone rang, and I almost slept through it! My Dad came running out of his office to wake me and tell me to answer it—and that was a good thing, because it was my fifth call for transplant. I was told, yet again, that this was IT—my liver, I was first in line for it, get my tail to the hospital. Dad and I were out the door in 10 minutes and on our way to Barnes-Jewish Hospital in St. Louis, Missouri; Aaron left work in Blytheville, Arkansas, three hours away from the hospital and got to StL in record time; and my Mom took a bit of time to get Danica and herself prepared to leave before meeting us in StL.

If you've been reading my blog for some time, you know the story: it actually happened that time! Both sides of our family converged on StL by that evening, and they started prepping me for surgery around 9 p.m.-ish. They whisked me away around 1 a.m. on the 11^th, and I actually got all the way through pre-op that time! It was real, the liver was good, and it was MINE. I don't remember anything until about three or so days later, but I've been told plenty about what happened in the intervening days. You've read it here, I don't need to re-hash it all.

As I've said before, I don't generally bring God into things, but I'm working hard at trying to find and get to know a Higher Power right now so I think it's appropriate. Thank God for Our Hero Dr. Christopher Anderson for his 11 hours of hard work on me that night, his life-saving game-time decisions, his redneck plumbing job, and his rockin' boots that have made me smile countless times. Thank God for the doctors and nurses who looked after me for the next several weeks. Thank God for Aaron, who barely left my side through it all; for my sisters who made me laugh, even though it hurt; for my parents who loved me no matter how bitchy I got; and for Aaron's family who got Danica through that time. Thank God for the friends and extended family who loved me, thought of me, and prayed for me. And thank you, God, for my donor. That family's sacrifice meant life for me.

The time since my transplant has been.... Interesting. I had just enough time to recover from the surgeries before starting more cancer treatments; multiple bowel obstructions and resulting surgeries and hospital stays; meds that have made me crazy and others to make me sane, meds to calm me down and meds to get me moving, meds to help me sleep, meds to make me numb, and cocktails that I will have to take for the rest of my life. But then there have been awesome check-ups, great test results, progressive healing, and a return of some motivation and desire to get my life back. Aaron and I have been through hell and back but are stronger for it, and we have (with lots of help!) raised a beautiful little girl through it all. I have made new friends, reconnected with old ones, and been loved and supported in ways I never thought possible. I am currently feeling physically better than I have in about four years, and mentally I am getting a little better every day.

My biggest discovery of the past two years? Normality will never return. 'Normal' is a daily struggle for me. I don't have my former health, I don't have my former motivation, I don't even have my former personality. Everything has been tainted and made different by this experience; but that, of course, is at it should be. Who could possibly go through something of this magnitude without being changed? My biggest struggle right now is no longer physical recovery, but emotional and mental recovery. Learning to accept a new normal is hard—I want things to go back to the way they were! I remember fondly how much energy I had to exercise, work, clean the house, play with my daughter, cook dinner, and then still have an enjoyable evening with my husband, all in one day, every day. Now I do well to get two or three of those things done in a day, and often that makes me exhausted for the following 24-hours. Choosing my priorities means things don't get done, which makes me feel guilty—I USED to be able to do it all. Why not now? Haven't I had enough time to recover? Nope. Things just aren't going to be the same, and I will never again be that same person, with the same body, and the same life. We've all had to make adjustments, and it's frustrating as hell.

Addiction has by far been the worst struggle of the past two years. I spent four years—through my quick downhill slide with PSC, cancer treatments, surgery after surgery, the transplant and Whipple, more cancer treatments, and MORE surgeries—on doses of pain medication that would put any one of you in a coma. You've seen the 'This is your brain on drugs' commercials, right? Well, it messed me up, in a huge way. No, I wasn't injecting heroin or snorting cocaine, but my need for the pain meds and the amount they messed up my head was right up there with those folks doing the hard dope, and ruining their lives with it. I very recently, after struggling badly all summer, came to the realization that I was spiraling downward ~fast~ and needed help ASAP. It's not enough to have willpower and the desire to change your behaviors for an addict (and yes, I believe that I am a True Addict): the disease of addiction wins out over willpower and rational thought every.single.time. Without getting totally down and dirty about how bad things were in my head and with my behaviors let me say that I am getting help in multiple ways now, and I am actually starting to get better. I'm seeing a shrink weekly, and attending support groups where I get to hear from others with similar experiences, and learn about the tools they used to overcome their addiction. I have now come to understand that this addiction will never leave me, and I am going to have to work damn hard every day for the rest of my life to keep it at bay. But I am starting to have success with some of the work I am doing, and trying hard as nuts to change my way of thinking, my behavior, and my life for the better. I've even started praying, because that seems to be working pretty well for a whole lot of people; some days I feel like I'm talking to the clouds, sometimes I feel heard. I'm not really sure who or what I am talking to, but it's starting to help me get through my toughest moments, and I think I am doing better for it. Just for today, things are going well. I will work on tomorrow when it comes.

So. Looking back I would change a lot; obviously I wish I could take back the sickness, the pain, the heartache, etc. But I've grown, my relationships have changed, and I've found love in many places. I think I will end up being a better person, in the end, for everything I have been through. I've learned that I can't take anything for granted, and that I absolutely MUST savor the good moments, because ~this moment~ may be all that I have.

Ok, enough with the sappy crap. Back to your regularly scheduled Vieve! Two years. Wow. Happy Liver-versary to me!

Clean. In multiple ways.

2011-06-03T18:20:00.003-05:00

Last week Dani and I spent a few days with my parents, and my Mom took me to all my 18-month post-transplant/10-month post-cholangiocarcinoma treatment scans. This included two full days of CT, MRI, liver, bone, and DVT scans; blood work from a vampire nurse; and x-rays. And a bad reaction to CT contrast and resultant two-day Benadryl fog/hangover (I have NEVER been given that much Benadryl, as far as I know; I don't know whether the itching/rash reaction, or the Benadryl skin crawling and sleepiness was worse. Ugh.). Long couple of days, but whatevs-- gotta do it sometimes.

Then over the past two days of this week I was scheduled to follow-up with oncology, pain management, and liver transplant. Oncology canceled at the last minute because my doc has gone on maternity leave. I had a strong feeling it was all going to be good news when they didn't need me to see one of her partners, and instead said I should follow-up when she returns in September. So down to just two appointments and more vampiric acts.

The pain management appointment went swimmingly, though I was nervous as hell about it. As many of you know, addiction is an unfortunate word in our vocabulary around here; though I didn't want to, I knew I needed to voice my concerns about my recent state of mind. Was he going to send me to rehab? Tell me I needed to see him more often? Send me to group therapy? Tell me to go find God? I really had no clue. The doctor that I feel the least connected to of all of them, however, was exceedingly kind and non-judgmental in his responses. I was reassured that nearly everything making me miserable as of late is Normal and Psychological. It will go away. I will get better, especially after getting through my first couple of months of clean-ness. I had a source of major anxiety lessened during that appointment, and thanked my stars for deciding to pipe up! This misery I have experienced is Normal, in my head, and will go away Soon!! I couldn't hang with this crap forever, and I think that's the worst thing that's been weighing me down--thinking the physical and mental withdrawal symptoms were just going to last the rest of my life. But with his promise that an end is in sight, the order to just see him PRN from now on, and reassurances that he thinks I am actually doing very well, my shoulders unhunched and I have noticed a visible change in my mindset. Already! The reassurance of someone very experienced in these matters just lifted SUCH a weight. Ahhhhhh....

Then Dr. Anderson--cowboy, artist, and my favorite doc of all time, if you recall from past postings-- told me yesterday morning that my scans are all CLEAN and things look great for me! My DVT is gone, I get to go off a couple of meds, and he says he hopes I have already had the last surgeries I will ever need in my lifetime (well, don't we all??). More reassurances that, after everything I have been through in the past four years, he feels I am going to soar through some of my current comparatively-niggly issues (my own emphasis on the comparatively-niggly part). And then he says, "So, I have some news."

And then proceeded to tell me he is LEEEEEEEEEEAAAAAAAVVVVVVVVVIIINNNGGGGGGG WashU/Barnes-Jewish for an opportunity he couldn't turn down. Instead of the appropriate, "wow, congrats to you!!" answer, my nosey-ass says, "WHAT? WHAT HAPPENED?? WHY??" [I'm taking this opportunity for some Dr. Anderson promotion, so everyone listen up...] He went on to tell me is going to be building up the liver surgery program at U of Mississippi, and instituting the first liver transplant program in their state! Wowsa! Well of course he couldn't turn that down, creating and heading up his own program. I'm betting he is going to draw some terrific medical talent to the program. Selfishly, I can't reconcile the idea that I am going to have to see someone else at Barnes if a need for more abdominal surgery ever arises, so I've just decided that I will have to never have surgery again. Or, I might be headed a few hours south to Jackson, MS, instead of a few hours north to St. Louis, MO. He stated clearly that he would never encourage me to leave the WashU program, but reassured me that he would be reachable if I did need him. We decided that WashU probably won't be forwarding all his new information; you can bet your butt I'll be Google-ing soon, though, to have those details on hand. :)

While we were in StL for the last two days Aaron, Danica and I made a big time of it! On Wednesday evening we went to the Cardinals game [which, despite their extra-innings loss, I enjoyed thoroughly. I discovered Tim Lincecum, and we were situated in the stands so that I pretty much stared at his butt for seven innings. Excellent!], stayed at the Hyatt downtown, and then spent yesterday afternoon after my liver appointment at the StL Zoo. Whew, another full two days! Aaron is a consummate trooper, but Danica and I were both pretty much exhausted by the time we got in the car--I even had to veto extra zoo exhibits, as I wasn't having a great day. Danica fell asleep within four minutes of getting in her car seat, and I followed about thirty minutes later. We've been down today, recuperating.

So, to sum up: I'm clean of all mind-altering, relaxation-inducing, non-essential drugs. My scans are clean. I have recently had a shower (hey, sometimes that's hard to do when you're low on spoons...).

And, better late than never: CONGRATULATIONS DR. ANDERSON!! We will miss you terribly, but I have a feeling you have not seen the last of us. Jackson ain't too far.

Oh, and please keep wearing your rockin' boots. :)

Rapture and Heaven.

2011-05-21T19:00:00.005-05:00

So a friend comments to me today:

"Here's an interesting thought...so imagine if the rapture were real. If you lived a good life and got taken away to heaven, but your donor was a sinner....would everything except your liver disappear?"

Now *that* is a question I want answers to. D, you are great! :)

Thanks to Jimbo, Mom & Dad, and 'Anonymous' for the donor-contacting comments; I was really eager to hear what people thought about contact between donor family and recipient once I started thinking about it the other morning. *Of course* I am not about to go off and FB the family of the person I think ~might possibly perhaps~ be the donor. At this point I don't even know if I want to send that anonymous letter. It's all good, peeps, I ain't gone' do nothin' stoopid.

In other news, I like to report Good Stuff every once in awhile (because it has been ohsorare these past few years...), so check this out: today we started out with Danica's dance recital, then went on to gorge ourselves at our local Japanese restaurant (where Danica is always most excited about 1. seaweed, and 2. tofu-- no joke), then spent the afternoon out on our lake trolling around and fishing. I sat in the sun this afternoon and actually said out loud to Aaron, 'This.Is.Heaven.' and thought to myself, 'it sure is good to feel normal for a change!!' Rock on, right?? Right.

Pics of our catches (we release)!

Danica and Mom, and Mom's big bluegill:

Danica and Daddy, with her biggest catch of the day: a pretty bass, just her size!

Found My Donor???

2011-05-17T11:52:00.002-05:00

I think I may have found my donor.

I've been searching all morning, and only found one even remotely promising result when including all the pertinent info in my Google searches; everything seems to fit. So much of this, though, is based on educated assumptions.

This is the first time I've been able to think coherently about this without going into a panic attack, and I've decided I am ready for more information. I want to know: Does the family know anything about where the organs went? [Probably Not.] Have they ever heard from someone (anonymously or otherwise) who thinks they received the liver? Do they even want to be contacted about this? [It seems the donor and family were pleased with the organ donation decision.] What if this is the wrong person, and I cause emotional grief for myself and the family? [I know this is why they created the super-secret channels of communication you are supposed to go through with letters to the family...] I don't want to post links to the articles or obit I've found that led me to believe this is the person.

What the heck do I do next???

Beav's Body is Back!

2011-05-15T09:57:00.006-05:00

Alrighty. For those of you who didn't see them on FB, here are the pics...

18 Months Post-TX....

2011-05-14T21:43:00.002-05:00

So, here I am, back again, after yet another long hiatus from my 'I swear I will keep you all up to date' blog. So much has been going on, and I have just shamefully ignored my blog. I'll do a quick-and-dirty update.

On December 26, 2010 I went to the ER in Liberty, MO, and was then transferred to Barnes the next day for a Bowel Obstruction, YAYAY! Nineteen days and one belly surgery later, I was released.
Then back again in late January, 2011 for an infection, resulting from the surgery. A weekish this time.
Then yet ANOTHER bowel obstruction and resultant surgery in February. Two Weeks.

So, remember how I was OFF the narcs? This all screwed that plan up, BUT, I am happy to report, that I have stopped the narcs again, this time on a taper devised by Aaron and myself, and that I have been clean again since this past Monday!! Big step for a big addict.

I am thrilled to report that the entire 45 lbs I gained on steroid weight, plus 10 more lbs, has vanished from my bod. My new rockin bod!! I'm spending more time at the Y or walking in the neighborhood lately, and seem to be having many more days that are full of energy and activity. Right On!

I go in for appointments on May 26th and 27th for all my 18 months-post-tx cholangio scans, then back the next week to see my oncologist, pain mgmt doc, and tx surgeon to get results and make 'where do we go from here?' plans. The last time I saw my oncologist I had about 50 more lbs on my tiny frame, so I expect to get a look of surprise and relief from her; my abs are in better shape since seeing my surgeon, so he won't be dealing with a big puffy mess; and I'm sure my pain doc will be suprised to know that we went ahead and did our own taper to get me off the narcs, thank you very much. And life was waaaaaaay more easily dealt with during withdrawal this time around.

I guess there will be more to post after all those appointments, so until then, Ta!

Happy Liversary To ME!!!

2010-11-11T06:35:00.003-06:00

At this time last year I was still in surgery (it had started at 2 a.m. and was an 11 hour surgery, if I remember correctly). Not only were my liver, gallbladder and bile ducts removed, but also about 1/3 of my pancreas (Whipple); when my new bright and shiny liver was put in the doc did some reworking of my stomach and intestines, and added some new arteries and surgical mesh. The surgery was a success!!

I've been in the hospital several times since then, but for various other things; I have not had a single episode of rejection. I am finally off narcotics, in minimal pain, and every three months since the transplant all my scans have looked terrific. I am starting to live my LIFE again, and it feels So Good--for a long time it was hard to see that I would ever find normalcy after what I went through.

Thank you, thank you, thank you to the incredible soul who signed their organ donor card, and made saving the lives of countless others their final act. Made saving MY life his/her final act. I don't know who the person or the family were, and I still haven't decided if I want to contact them anonymously--maybe someday.

And though I don't usually bring God into things, I have to thank Him, as well. Some higher being, higher force, God, whatever we all believe--someone larger than any of us was at work that day, November 11, 2009, for myself, my husband, my daughter, and our families and friends. Thank you.

The Light at the End of the Tunnel.

2010-11-08T16:22:00.004-06:00

Today is a day that I can see juuuuust a little bit of that light at the end of the tunnel. Gosh, it's been a long time since I posted, so here are some quick updates:

My last chemotherapy was at the end of July. It took about a month to really start feeling better, but the fatigue hasn't gone away yet. I get motivated to go for a walk, or try to get something major done every once in a while, and then it knocks me flat down for the whole next day. I really don't have a lot of energy or stamina most days.
My scans (happening every three months) have been looking great! Everything in it's (newly) proper place, and nothing suspicious at all. My next scans and appointments with a slew of doctors are happening the week of Thanksgiving.
I am now finally, and officially, OFF THE NARCS!!!! We've been working with a pain management doctor since the transplant, and we started weaning seriously over the summer. The time finally came when the doc said, 'Ok, no more. This is the last month.' So he gave us a tapering schedule and instructions, Aaron controlled my pills during that time, and as of about two weeks ago I went off the morphine for good. My first few days were awful--curled into a ball, rocking myself, and trying to sleep through as much of it as possible. The last couple of days, FINALLY, I have not woken up and immediately wanted a pill. I can think of other things now, besides when my next dose is due, or how I might get a hold of a pill. Let's hear a BIG hurray for this accomplishment! It was a major step.

So the further out I get from going off the narcs, the better my moods and motivation seem to be. It's crazy how something can affect one's personality so much, but they don't even notice it. I didn't think my personality was affected by the drugs; I thought I was just going through post-surgical depression, which can be pretty normal. Now that I've come out the other side, it's getting clearer every day that *I* am coming back bit by bit.

The prompt for all this is my sudden and intense desire to start working out again, and renewing my membership at the Y. Danica is home sick today, so we did a lengthy neighborhood walk instead, but I fully intend to go to the Y the rest of this week. This desire to get back into something I enjoyed so much before becoming really ill is suddenly coming from somewhere, and I can only deduce that the poison leaving my body is letting me finally, finally get back to my reality. I know I need to take it slow at first--this is a big step for someone who gets tired just doing the laundry!--but I am getting the workout itch again. Yay for me!! By golly, Lib, I intend to look HAWT in the bridesmaid gown next fall. ;)

Anyone know what Thursday is.....? Quite a milestone is approaching. I'll post again then... :)

An Abnormally Normal Treatment Day.

2010-07-09T00:10:00.022-05:00

Given the unfortunate eventfulness of my life on poison infusions since January, approximately two weeks without much to report makes me want to sing! {Plug your ears, now...} HALL!-eh-LUH-jah.... HALL!-eh-LUH-jah. Etc. Etc.

I had my second to last chemo treatment on Wednesday afternoon (7-7). Only ONE MORE treatment! Can you all believe that the end is ~thisclose~?!?! As far as quick and easy days at the hospital, this week really took the cake. I discovered my good luck charm in my MIL, I think (this is the first time she's taken me to chemo), but about seven months too late, darnit. Danica and I have been pretty much 'taken care of' by one Mom or the other since January, and for now we are taking a turn staying in KC while Aaron stays home to work. Judy would usually be Dani's caregiver for the day and Aaron would take me to chemo, but we're giving him a hospital break right now.

SO we're in KC, Grandpa kept Dani up here, and Judy took me to StL to the docs. Though we allowed plenty of time to get there, we still managed to walk in to the treatment center 15 minutes late--I swear I inherited an 'impossible-to-be-on-time' gene--but that didn't end up mattering anyway as they were running even further behind than we were. My doc was out of town and didn't make me see anyone else in her clinic, so I only had two appointments, back-to-back (I was cutting it really close with the scheduling, even without the running late crapola). All my pre-meds plus waiting plus treatment took just over 90 minutes, then we booked it to the next building over to see my pain management doc. At my request we went further down on my pain patch a bit earlier than we had originally planned, and I'm hoping that's going to stick. If so, this will be my lowest dose on continuous Fentanyl since my radiation treatments began in February of 2009. Now I'm not celebrating anything yet, but even being in a mood to desire going this low on my pain meds is saying something. There's something happier and healthier triggered in my brain somewhere ATM that is working out for me, I think. Yay. :)

ANYhoo, waiting for appointments at the pain mgmt clinic --or even just going in to pick up a hand-written script that you called a *week in advance* to have ready--is generally like pulling teeth without anesthetics. Yes, I AM serious, it can be absolutely the worst clinic I've ever experienced. Wednesday--expecting the worst and panicking just a bit because I needed two narcotic scripts THAT DAY--I called the pain center from my chemo recliner explaining that things were running behind and I still wanted to make my appointment today, but I was afraid they were going to be closed by the time I finished at the cancer center. Well, the nurse took all my info, including everything I wanted to talk to the doc about that day, and the scripts I needed, and went to talk to the doc who was 'in a procedure' (he is always in a procedure. He lives in procedures. I'm not sure if he really even does procedures at all, or if that is his blanket statement to anyone trying to reach him, so he can screen.... Whatevs.) Well, I am still reeling from this one, but my doc and one nurse stayed late at the clinic, after everyone else was already gone (except for probably a resident and a few short-coats), so I could get in to be seen and get my scripts. WOWZA!!

So after booking it through my chemo infusion--my nurses at the cancer center were so fast and efficient when I told them how quickly I needed to get out of there, it was CRAzy--we trucked over to the pain center, where I was in and out within 30 minutes. Then, armed with my much-needed two new handwritten scripts we trucked BACK to the Siteman Cancer Center; they house my favorite pharmacy in the hospital system, by far and away. But when we got there the bars were already down over the counter!! NOOOO!!!!!! The look on my face must have just been one of heartbreak and horror (LOL), because the pharmacist looked at me, chuckled (we know each other well there), and held out his hand for my scripts--done inside of ten minutes, easy. And they even lifted the bars back up for me to pay, LOL. I told them I could've slipped them a card through the bars, but they laughed and said they wouldn't be able to get the goods back out to me that way. :)

And that was that, Bada-bing, Bada-boom. It all got done so fast, and was such a whirlwind day that I told Judy she didn't even truly get to experience what it was actually like to come to a chemo day with me, since it was all so abnormally fast and ~normal~! :) Generally the first appointment of the day is around 11 to 11:30 a.m. with oncology, then I sometimes have to get the previous days' labs redrawn, then an hour-long chemo infusion takes at least two hours if you tell them you're not in any hurry, and you get to hang in the recliner, read, watch t.v., chat with the nurses and volunteers and sometimes the other patients, etc. Aaron takes the time to run across the street to Panera Bread Co. for me, good man that he is, and will bring me back whatever I decide is the flav 'o' the day. Then after all is said and done at Siteman I may have a scan or two to check on progress of the NON-CANCER. Notice I said the progress of the NON-CANCER. ;) Then generally there is at least one other appointment: pain management appointments are generally every 28 days, so those are pretty frequent; transplant surgery and transplant hepatology are getting further between now that I am continuing to do so well. And every once in a blue moon I schedule myself for a full darn day of ALL OF IT, together, just for the sake of driving up and back in one day to get it all done. We've made it work, but sheez-oh-Pete that makes for a cuh-raaaayyyy-zzzzy day!!

The drive back was hell, but it's not that fun of a story. Semis in accidents blocking the Interstate miles ahead of us, so we were re-routed and all turned around at some point--chugging along resulting detours and backwoods roads--as chemo guts were getting more insistintly rumbly in my tumbly. Something had to go wrong at SOME point, right? And then I'm still pretty much on a dex high, although I feel awful and feel like I should be majorly crashing at this point--and that's a strange feeling, to need to crash hard, but be physically unable to do so. So I slept a little in the car last night, then a little in the bed until waking up to puke around 4:30 a.m. on Thurs., and I am STILL up. Steroids, much? Gah. I'm staying hydrated, though, and even well-enough fed, so no worries--things are abnormally normal.

I was all ready to crash around 10 p.m., falling asleep while watching t.v. and speaking pure nonsense to Aaron over the phone when he called to check in right around that time. I got a twenty-seventh wind all too quickly after brushing my teeth and washing my face, though, and so here I am up, again, STILL. Time to medicate, I think, and use the good stuff. Pillow, here I come! :) Nighty-night, all.

Ramble On... Or, Fat-and-Getting-Happier.

2010-06-28T16:26:00.063-05:00

So here I am. Yes, it is me, BEAV! When was the last time I posted--have I, since the transplant? Before that? I don't even know... My Mom just walked into the computer room, though (we're in Rolla right now), and was A-Mazed to see me sitting at the computer, cleaning out my email inbox (Viagra at a great price, anyone??), and getting ready to update Facebook. Her mouth dropped open and she just stared for a second. :) So I guess that's a good thing, that I'm up to sitting here, doing this (though I must mention that my abdomen and back are pretty sore at this point, from sitting up at the desk chair; I've already done email and FB, so this will be my last big thing before retiring back to the couch with my pain meds and getting out one of the various laptops around here to check in with fun FB stuff, etc. I forgot my own computer at home, durnit.). :) Anyhoo, on to the updates... the point of the blog in the first place! Maybe pain meds now, and not later, are a good option though.... Yeah. BRB. Not that you'll notice.

OK! So... Health stuff. Chemo and steroids are really the only news there, and it's just been ongoing since January--same old, same old, with lots of ups and downs. I finally weaned off the prednisone from the transplant at 6-months post Tx--the usual time. Chemo was in full-swing at that poiunt, and I had been doing ok--as well as anyone really does on chemo. I was wiped out, puking sometime, nauseated a lot of the time, etc. We realized after a couple more treatments that my side effects were getting worse as the chemo treatments compiled, and getting pretty brutal since I stopped the steroids. My oncologist then added back in a large booster dose of steroids on chemo day to help minimize the side effects; this is a pretty normal treatment, as I understand it.

But still, I felt awful, and I was ***Soooo*** lucky to get the uncommon side effect of swelling along with the Gemzar; I about stopped walking because my legs hurt SO bad, and I gained TEN POUNDS of water weight just in my lower legs and feet--you should have seen the sausages on the ends of my feet (no, wait, you shouldn't have--you would have been grossed out!). My Mom and I took pictures but they were sooo awful I didn't even want her to post them! I couldn't even get regular damn Crocs on, and I lived in one pair of flip-flops that I had to buy to fit my ugly ole' feet. And my Gawsh it hurt so bad I can't even describe. When Dani had her eye surgery and I had the emergency U/S at the end of that day, I had to nearly run from Children's to the imaging location because it was about 4:50 p.m.; I thought I was going to die. I would have traded almost anything to have a kind stranger push me in a wheelchair to my U/S! If I had found a spare wheelchair just sitting around on the way there, I swear I would have asked. If I had more than five minutes to get there, and I had realized how badly I would be hurting after the first 20 yards or so of walking, I would have had called patient transport to get me there. It was horrible.

SO after we saw I was not clotting anywhere in my legs, my oncologist determined that it was a Gemzar s/e and increased my steroid dose from 10 mgs dexamethosone IV before chemo treatments to that, plus 4 mgs on days 2, 3, and 4 of each chemo cycle. For a little while I was doing ok; the swelling stopped, anyway, after we flushed out all that extra fluid in my legs. But after day four of the cycle I was becoming even more lethargic than before, sleeping all day long and most of the nights (I still have a badly out-of-whack vampire shedule that I swear is just how my own personal biological clock is set...), really nauseated, and not wanting to eat a thing (which made me feel even sicker when I DID eat). My Dad and oncologist agreed that it seemed my adrenal glands weren't working very well on their own, and that I had become steroid-dependant--YAY!! MORE STEROIDS FOR ME!!!! Blech. So NOW I take all the steroids as previously described, plus 2 mgs dex on days 5 through 14, until I get my next treatment--at which point we start the cycle all over. Now my Dad and brother-in-law, both docs, described dex to me as 'steroids on steroids'--nice. So just let THAT sink in for a second while you contemplate what steroids can do to a person. If you hadn't already guessed, all these steroids are where the 'Fat' part comes in....

Fat and Happy hasn't *quite* been an appropriate description of me lately. I got the crazy idea about three months ago to try to decrease my anti-depressants (sugar pills, as Aaron calls them--gripe at him in the comments section if you want, he can take it... :) ) in the midst of this whole shit storm--as in cut my dose in half. Yeah, well, THAT didn't work. I finally realized that I ~must~ do something to get my ass off the couch and start talking to people again, and that it would be good to smile--maybe even laugh a bit--and started back on my full dose (with doc approval, of course). So, while Fat and Dangerously-Down-in-the-Dumps was me for a while, Fat and Getting-Happier is now an apt description. That's partly a good thing! I take that back--it's really a ~very~ good thing, because the HAPPY part is the most important.

The F-A-T part is the not-good thing, but as we all know, steroids just DO that. Many of you know the drill: no matter how hard you try you simply can NOT stop eating at any and all hours of the day and night, and the sheer volume of food you consume just packs it ON. It is a compulsion to just continue to eat all day long, with very little satisfaction, often times. I have the added problem of carb cravings, so if there aren't enough bagels or cornbread in sight it's SUGAR for me. And yes, I KNOW HOW BAD I'm eating. I understand that I making myself fat. I KNOW how unhealthy Pop Tarts and Fruit Loops are!! This problem is not something I can just think through and solve with logic, unfortunately; there is something wrong in my body, because of my medications, that is causing this. I really can't just stop it with self-control--I'VE TRIED!!! I am just weak, I guess. I really, truly wish there were a good way to make you 'healthy' others--who have never had steroid-induced mood swings, eating compulsions, and the rest--understand why one might wake up and NEED to eat some crackers at 3:30 a.m. I get candy at many gas station stops (and there's a LOT of those, since we're traveling so much for my treatments and appointments), milkshakes any time I can get 'em, and I'm currently snacking on some homemade cornbread to satisfy myself as I type--had to make a kitchen stop after I went to get my meds. My docs told me, (after the transplant, during one of those 'here is the way your life will be from now on' speeches...) that their average patient weight-gain on the prednisone regimen they use was about 30 lbs. And honestly, many liver disease patients can USE that extra 30 lbs by the time they get their liver. Do you guys--who saw me in the first half of 2009--remember how thin and sickly I looked?! I definitely needed some weight on me.

Except, they tube feed you WELL while you're in for that transplant. In fact, I got steak, mashed potatoes, and milkshakes through a tube (as my nutritionist joked one time) each of the three or so times that I was in the Big House long enough to be tube fed before the transplant; and then for nearly the full 20 days I was in the Joint for the Big Deal itself. So they fattened me up a bit to where I only needed to gain about 10 more lbs. on my own by the time I left to be nice and healthy and non-sickly. (Despite the pictures that showed my beautiful hospital puffiness from the fluids and the surgeries, I really did need 10 more 'healthy' lbs.)

So, since I've added my 30 lbs--right on the button--since then, I've got a prob-lem: that problem is F-A-T. And I've gotten tooooo used to this soft bod. Ugh. I finally (finally, FINALLY!!!) felt well enough to do some major retail therapy last week, and bought clothes in new, yuckily larger sizes. Remember, I'm 5'2" in nice supportive shoes, so even five lbs shows on me; sadly, 30 lbs shows eeeeven more. Blah. (Just an aside--I also spent plenty of time in Sephora and The Body Shop and the shoe section of Dillards to have some nice *non-depressive* therapy time. :) I even found some fun hair stuff that might help this sad, thin head of chemo hair...)

I've been shopping here and there as I feel up to getting out of the house--little things at Wallet Mart and Penney's and the like, just so I have enough hanging-out-in-the-house clothes. But I really had NADA for showing myself in public, in my current size--even my fat clothes weren't big enough (ladies, you know what I'm talking about--we all have our closets full of at least three sizes, hoping we'll get back down to 'xx' one day...). So last week I did some shopping, got some nice basic pieces and a few really fun things. My Mom bought me a new pair of shoes (she still owed me from the first time I walked after the Tx when I was in ICU--my therapist was trying to motivate me to go a liiiiittle further, and Mom promised me *new shoes* if I did it--she knows how to motivate a Felts girl. ;) By golly, I never forgot, and I took her up on it last week!), and I bought a fun sun hat (OMG, I had a Nas-Ty rashy/pimply reaction to the sun on my back, shoulders, and chest the first time I was out in the sun this summer--damn DAMN meds. No suntan for me this year--or ever, maybe??? I learned my lesson. Sunscreen, sunhat, and COVERAGE in the sun from now on. Gah.), and there were plenty of little makeup and body and hair things to go along with the big clothes. So, I had a BLAST shopping until the mall closed with my Momma. And I crashed hard on the way home, and the next day, and the next.... Etc. Chemo sucks.

So, here is what I would love for folks to weigh in on: Despite what we all know steroids can do to one's body, do you think it's lazy to let the weight 'pack on', by thinking 'I'll get rid of all this when I'm off the drugs and chemo's over, and I feel like getting up again'; or should I be more regimented in the moment, and try to my damndest to NOT let the weight gain happen? Is it even possible to stop steroid weight gain by sheer will power, when it's already a known side effect in one's body?? Is this all mental--am I giving myself an excuse to eat poorly and let go of self-control because I am on the steroids? I'm afraid that I am getting too comfortable and telling myself, 'I can't help it, so why worry now? It will come off later.'

I do like to eat healthy, and many of you know of my love for cooking from scratch and cooking healthy foods for my family (when I have the energy to stand in the kitchen for more than 10 minutes at a time!!). When I see that my weight has stabilized or even that I've dropped a couple of lbs, I relax a little and let my body dictate when and what I want to eat. Then I see the numbers on the scale creeping up and I absolutely torture myself for a day or two trying to 'be good', and not allowing food when I want it (and then all I do is obsess over food the whole day, until it's 'time' to eat!). I just weighed myself now, and I am holding very steady at 20 lbs over my heaviest 'normal' healthy weight--I've been right at this mark for about a month now, with the exceptions of swelling and fluid weight after hospitalizations. {Most recently, I was in the Big House in Dyersburg for four days a few weeks ago with a bad gut virus and dehydration. I couldn't keep my immunosuppressants down because I was throwing up so much, and I was so weak with a lack of calories and fluids that I could hardly get myself from the couch to the car--even with my Mom's help--to ride to the ER. It was baaaad. But, I *must* commend Dyersburg Regional Medical Center's ER! I had the quickest, best experience I've ever had there. I didn't wait for even twenty minutes total, I bet, including waiting to see the doc. A nurse came and got me out of the car and got me into a wheelchair within about two minutes of us pulling up at the curb, and I was wheeled directly from the waiting room to the back , with a nurse waiting with the door open for us! They took my condition very seriously, I saw the nurses and then the doctor *immediately* and got necessary meds as soon as they accessed my port and had drawn labs. I was really amazed and impressed (considering some of my past experiences there)--we were out of the ER and I was admitted and in a room with a nurse's attention before Danica ever even got bored!! Good work, Dburg Hosp folks.}

Ugh, this all sucks. I just needed to whine about it all for a bit; thanks for sticking around and 'listening', if you're still here, I appreciate that. :) Now I've spent literally hours on this post, between striking the first key and taking phone calls, and snacking, and playing with Danica, and everything else I've done in between proof- and re-reading my post about a hundred times (as I obsessively do), so I hope it's coherent! If it's not, I blame the drugs. :)

And another thing: (many of you might have already seen this sentiment on my Facebook page, but I want to re-iterate) Thank You for sticking around, for your support, your thoughts, and your postings and prayers, even though I've bailed on nearly everyone during this shit-ass messy time. I think I may have gotten through some of this easier had I surrounded myself with your love rather than becoming detatched and pulling away, but that's just the way I've dealt with it. The end is in sight for me, at this point. Our plan up until now has been to finish chemo, than we'll watch and wait and do scans and just see what happens next. Right now I have two chemo treatments left: 7-7, and 7-21 are the scheduled dates. The rest of our summer is even becoming full, with the anticipation that I might be well enough after that point to actually DO things!! I would love to fill in the week days with visits and postings and online chatter, if I really am up to it as I am now hoping to be. I'm looking forward to The End of this mess, and a bit of 'old' normalcy creeping back in with whatever our new pattern of 'normal' becomes.

Much love to you all!! Thanks for listening. Beav Out.

6 months post-transplant

2010-05-15T09:42:00.003-05:00

Cindy here, Genevieve's mom. She asked me to update the blog for her. The new liver is working beautifully, and there have been no rejection episodes. She was hospitalized for a few days in late March because she could not keep down food or meds. She had RSV, a childhood virus, and needed plasma and fluids. She is now off the prednisone and is no longer feeling that steroid-induced insatiable hunger. Yes, she did gain weight, but that is a normal side effect. I have been very impressed with the post-transplant care from the team at Barnes Hospital. A nurse transplant coordinator is always available to answer questions.

Genevieve still is not able to do much, including spending time on the Internet, but it's not because of the transplant. Chemotherapy has her down now. She is getting a drug called Gemzar once every other week. The normal dosage pattern for this drug is every week, but her white blood cell count takes two weeks to rebound after each treatment, so the doctors decided to go with the two-week interval. Genevieve and Aaron discussed with her doctor the option to stop at four months, but they elected to continue chemotherapy in order to get the maximum benefit from the drug, possibly for two more months.

The side effects of the Gemzar are beginning to accumulate, and the weeks following each chemo treatment are getting harder on Genevieve. She spends about a week in bed or on the couch. Her side effects: She is experiencing some nausea, so the prednisone weight will probably come off. She aches all over (imagine the worst all-over flu achiness you've ever had, and multiply it by ten--that's how she feels for the first two to three days post-treatment). Her feet and legs are very swollen ("Whoever heard of tight flip-flops?" she said) so she spends a lot of time with her feet elevated. We have even been using ice packs, and the coolness gives her some relief.

Danica has been back at preschool and has one week left until she "graduates" into the "Fabulous Fives" class when school starts again in August. She had strabismus eye surgery at the end of April at Children's Hospital in St. Louis and came through with flying colors. Her eyes are no longer crossing at the end of the day when she gets tired. I think the surgery may have been harder on Genevieve than Danica. Vieve ended up having an "emergency" ultrasound on her legs and feet to check for blood clots as Danica was just waking up. All was well--she had just been on her feet for too long.

One more thing I have been impressed with--Nucor Steel, Aaron's employer, which has been very understanding about letting him take Genevieve to her appointments in the middle of the week. (It sure makes a difference in your life when you work for a company that values its employees--just a personal comment from me.) Aaron's mom, Judy, and I have taken turns being here to take care of both Genevieve and Danica, and we will continue until she gets through chemo and can decrease the pain medications and begin to function normally again.

March photo

2010-05-14T21:25:00.002-05:00

Genevieve and Danica in March

Heading home this week

2010-01-11T19:59:00.002-06:00

Genevieve looked great when Anne took her out for errands on Sunday. (That's Anne's little behind on the left.) Vieve has appointments at Barnes on Wednesday, then will head home to Dyersburg. Danica is asking to go back to preschool, and Genevieve is definitely ready to go home. She will not be able to drive for some time yet, so I am counting on all of you Tennessee friends to check in with her. Aaron's mom, Judy, will help her out for awhile, too. Mom and Pop will miss her in Rolla, but we are thrilled with her progress and happy she is well enough to live in Dyersburg again. I hope the next post to this blog will be from Genevieve herself.--Cindy

December the Thirtieth!

2009-12-31T17:14:00.005-06:00

On December the Thirtieth, Danica was 4 years old! The Felts-Meyer family celebrated in Rolla with Danica's requested meal: lamb chops with mint jelly. An ice cream cake and presents followed, along with a family portrait (above) of Aaron, Genevieve and Danica. Genevieve had another a big reason to celebrate--at her appointment in St. Louis earlier in the day, Dr. Anderson took out the jejunostomy tube (the feeding tube through her belly wall into the stomach). Dr. Anderson pronounced her well enough to start chemotherapy and she has an appointment with the oncologist in 2 weeks. She is close to being able to go home to Dyersburg--perhaps after that appointment on Jan. 13.

Genevieve, Libby, and I plan to make a Japanese dinner tonight to celebrate the New Year--miso soup for Danica, who loves the seaweed in it; and potstickers, rice, and shrimp and vegetable tempura for everyone. Anne will join us back in Rolla tomorrow. We hope to take a drive in the morning to Montauk State Park to see bald eagles. A happy and HEALTHY New Year to all!--Cindy

Take my picture!

2009-12-14T19:44:00.003-06:00

Thanks to Kelly for the fake nose--it made Genevieve laugh. She continues to recover and has even made one short trip with Aaron to WalMart. A milestone of sorts! She is trying to Christmas shop online. She is looking at her email for the first time (900 emails!) and is still reading blog and Facebook comments. She has many tired days, but she is still eating well, and her blood work still looks good. Another doctor's appointment on Wednesday to check up on her progress.

Our whole family is eating well because of all my dear friends who have brought food. I have been on overload for 10 days now because I am grading 130 or so research papers, and I really appreciate the help. Genevieve's sisters Anne and Libby will be here on Wednesday and this weekend. Aaron will try to get back to work later this week, so we will need the extra help with Danica.--Cindy

Well enough to be sassy

2009-12-09T20:07:00.003-06:00

"Let me take your picture--you look cute today."

"NO!"

You can see Genevieve's pretty hazel eyes in this photo. (Hurray! I took a picture without the "red eye" problem I usually get.)

Genevieve and Aaron went to a post-transplant check-up today. The doctors took out her remaining staples--the ones she hadn't already picked out. She is healing well. She has some uncomfortable bloating and fluid build-up inside her abdomen, but those are normal effects of the Whipple procedure. She says the doctors could not answer all of her questions (she went in with a 3-page list) because she has entered rare territory. Only a few people, 10 or 20, maybe, have had a liver transplant with a Whipple procedure. And of those, how many have had their colon removed and have a J-pouch? She will see the surgeons again next week, as well as the pain management people so she can start a program to get off her pain medications.

We are now looking forward to Christmas with a 4-year-old. What a happy time! The UPS and Fed Ex trucks know the way to our house, and I am hiding presents!--Cindy

Mother-daughter PJs

2009-12-06T13:42:00.002-06:00

Genevieve and Danica are wearing their matching Christmas PJs. Genevieve is doing well and is reading your posts. Her liver functions continue to look good. Thank you for all your encouragement.--Cindy

Doing well

2009-12-01T23:15:00.003-06:00

Genevieve is doing well. Her liver functions are excellent and blood sugar looks good. She is eating fairly normally for the first time in years. She still has incision pain and gets very tired.... But look! She is able to hold Danica on her lap!

Genevieve leaves the hospital

2009-11-29T10:56:00.002-06:00

Cindy here. Genevieve was released from the hospital yesterday and arrived in Rolla at about 9 p.m. In this picture she is being wheeled to the car by a hospital staff member. Jim picked her up because Aaron left the hospital on Friday to drive to Kansas City to spend a few days with his family and get Danica. They will arrive in Rolla today.

Jim says it took forever for the discharge paperwork to be correct and finalized, partly complicated by the fact that the doctors on the floor had to attend to an emergency. Genevieve brought home a boatload of prescriptions. I count 15 bottles (plus syringes) on my countertop right now, and that's not all of them. The hospital staff gave Vieve a chart listing every med, what it is for, and the dosage. She has to check her blood sugar, too. Thank heavens for the doctor in the family, because I am not sure I could keep it all straight, let alone help her with an injection.

Jim and Aaron and I will work on getting Vieve fed, up and around, and healthy. I will continue to post to the blog periodically until she is able to do so. She has a long recovery ahead of her.

Picture of the day / Update

2009-11-27T19:31:00.003-06:00

This is Danica, fast asleep with M in a sleeping bag, on the night her Mommy got a new liver. Genevieve is still in the hospital, although she is off her IV and the last drain tube was removed. Some medication issues are still to be resolved, but she is doing well. Any day now.

Don't Look if You are Squeamish

2009-11-26T14:29:00.004-06:00

Whoop. Too late.

Genevieve says that it looks like they cut her in half. They did - but like Aaron says, it was across the grain this time. The other scar is from her previous bowel surgery. The feed tube is on the right, the two remaining drains are on the left. They removed another drain last night, so she only has one left! Today they also took out the central line that went straight into her jugular. She is now on oral pain meds and is doing fine.

She has been walking all over the hospital with Aaron. Not just on the 6th floor - but all over!

We still don't exactly know when they will let her escape from the hospital. Mom is thinking about what she is going to do to prepare the house for Vieve. There is a rumor of a new chair...

Working hard

2009-11-25T14:11:00.003-06:00

Cindy here again. Vieve just told me this: An email from a friend had a simple statement that rings true for her, "Keep up the hard work." She is truly working hard to walk, move, and eat. Still no word on exactly when she will be released. Too many tubes, including two drains, still in. She had visits today from the transplant coordinator and dietitian, who talked about what to do after she gets home.

Fewer tubes

2009-11-24T18:14:00.002-06:00

Cindy here. Before I left the hospital last night, the nurse stopped Genevieve's tpn (total parenteral nutrition), which came in through the IV into her jugular vein. Hurray! The feeding tube into her stomach is now being used only at night. She is eating a variety of items, but in small amounts. Today, the nurse practioner on the transplant team removed one drain tube from her tummy--very carefully and gently. There are two left, and the plan is to remove one drain each day. Vieve has been fearing these tube removals because of a painful experience 10 years ago when she had her colon removed. This time, the nurse gave her a sedative and numbed her skin around the tube. I distracted her by talking about Christmas presents for Danica. A couple of stitches closed up the hole. So it wasn't bad at all this time.

Occupational therapy has "released" her, since she can put on her own pants, walk to the bathroom, and brush her teeth by herself. Unfortunately, her temperature was 100.4 one time last night, so the doctors have changed or added antibiotics. She has had several blood cultures today just to make sure there is no infection. The endocrinologists told her today that she is "unique." Nothing has been normal about her case yet, so they are not quite sure what to do with her. She is getting insulin shots, but we hope the need for insulin will decrease as her pancreas works up to full capacity and her diet stabilizes. She continues to walk, and she got dressed in her own clothing today--a pink shirt and striped pants. Quite stylish for the hospital. Her release from the hospital is still indefinite. The doctor on the transplant team said "the end of the week."

Picture of the Day: The Array

2009-11-23T17:32:00.002-06:00

This is the array of "stuff" on Genevieve's IV pole. It actually looks a lot less intimidating than the pole in the ICU.

A Busy Day

2009-11-23T16:48:00.002-06:00

Cindy here. Genevieve had a steady stream of hospital personnel through her room today. In addition to the normal blood pressure checks, finger sticks, blood draws, drain changes, dressing changes, and IV checks, several teams of doctors have been by, the physical therapist walked her around, the diabetes educator gave her a loooooong instructive talk, her new transplant coordinator came by with post-hospital info, and a pharmacist brought by a 3-month supply of her medicines. We learned that Vieve will be monitoring her blood sugar 4 times a day to make sure her pancreas is producing the required amount of insulin. She is supposed to eat 3 balanced meals a day. (It has been a long time since that happened. She hasn't felt like eating much for many months.) After she gets out of the hospital, a home health nurse will take blood samples twice a week to monitor her liver functions. And the family got a warning--the prednisone will make her moody! Feltses have been known to be moody even when they haven't had liver transplants, so we can deal with that one.

AND Vieve took a bath (actually in the bathroom) and washed her hair in real water! It took two of us to accomplish that. Vieve sat in the shower and Anne helped suds and rinse her hair while I handed in washcloths and towels. Amazingly, Anne didn't soak herself with the sprayer. She is much more coordinated than I am. We decided we could do a much better job of designing hospital bathrooms so they would actually be usable for people who have just had surgery. Vieve is not eating a lot yet, but she nibbled on a "cobblestone" muffin from Panera's. She is still getting nutrition from a feeding tube.

Several of the people in and out of her room today have mentioned "Friday" or "the end of the week" as a probable release date. The plan is for Vieve and Aaron to come to Rolla for a while so we can all watch over her. She still has a lot of drains and tubes that have to come out before they let her go. Right now we are watching her sleep, or sort of sleep. The high dose of prednisone has made her body twitch a lot, and it doesn't seem to us that she is getting a good quality of sleep. But who knows? Although she talks a lot when she dozes off, she's quiet right now.

A Special Visitor

2009-11-22T16:44:00.004-06:00

Genevieve had several visitors yesterday and today, including Miss Danica! Grandma and Grandpa Meyer brought Danica to St. Louis on Saturday. She got to visit her Mommy on Saturday evening; eat some toasted ravioli, tomatoes with salt, and pasta at Guido's on The Hill with the Felts and Meyer families; stay overnight at the Holiday Inn; eat chocolate chip pancakes for breakfast; and play at the hospital playground with her Daddy and Grandpa Meyer. They must have worn her out, because by late lunchtime, she was in "tornado mode," which is how she acts when she is overtired. Grandma Meyer reported she was asleep in the car within 5 minutes on the trip back to Orrick. The visit surely was good for Genevieve. She continues to doze off and talk in her sleep--mostly to Danica.

Becca, Aaron's sister, also drove all the way from Kansas City to visit today and fixed Vieve's hair for her. Grandpa Felts came, too, riding a wheelchair from the car to Vieve's room. Vieve's dad drove back to Rolla today, hopefully to chase away or capture the raccoon or raccoons that have invaded the Felts garage since we've been away. And Libby went back to Laramie via flights to KC, then Denver.

Vieve ate most of a milkshake today, some Corn Pops provided by the hospital (those are healthy?!!), and some juice. She is walking a little more. She carries on lucid conversations with us, but also drifts in and out of sleep, dreaming and talking.

Walking! ... and hallucinations ...

2009-11-21T14:55:00.002-06:00

Cindy here, Genevieve's mom. Genevieve is getting out of bed to go to the bathroom, and the physical therapist helped her walk out of her room, into the hall, and back. Genevieve says there is "no happy medium" when it comes to pain control. Before I got here, she says she was curled up in pain. Now she can sit up and get out of bed, but she has crazy dreams--hallucinations, really--when she drops off to sleep. The nurse says it is a combination of drugs--steroids, benadryl (for miserable incision itching), and morphine, and I don't know what else. In her sleep, Vieve mostly talks to/about Danica, telling her not to eat off the floor or pull something off the counter top! Vieve says she has taken Danica to the ER three times already today in these dreams. She just asked me to make the really soft brownies she likes, but she was afraid the ingredients weren't in the pantry. I told her I would go to the store and get them, and she dropped back into sleep.

Genevieve's hands are a little twitchy and she has some involuntary muscle spasms, which hurt, of course. Aaron is working away at cleaning and repairing her laptop, which she spilled hot chocolate on before the transplant. Maybe soon she will even be writing her own posts. Not making much progress on food, but she is keeping down water and ate a fourth of a popsickle this morning.

Address

2009-11-20T12:51:00.002-06:00

Genevieve can be sent cards, well-wishes, shoes, ostriches, ponies, ice cream...

She is in room 6576 at Barnes-Jewish Hospital in St. Louis.

Although she appreciates the thought, VIEVE IS NOT ALLOWED TO HAVE LIVE PLANTS or FLOWERS!

We are going to ask visitors to wait a little longer. Genevieve's medications are changing, so she is uncomfortable and pissed off about it! I would be too!

Hopefully she will start eating or drinking soon and will feel more up to having visitors in a few days.

Walking!

2009-11-19T16:28:00.002-06:00

Genevieve walked today, out of her room, down to room #10 (Vieve is in #12), back to her room and into a chair! She is focused on recovering from this surgery. She is also losing tubes as fast as we can count them. The ng tube is gone, and some of the iv stuff is gone. She got out of bed and into a chair by herself, took a bath, and got some spa treatment from a nurse.

We are still waiting on going downstairs to the OU or the floor. Apparently there is not room on the 4th (the Observation Unit), so if she stays overnight in the ICU, she will go straight to the floor tomorrow. Everyone says something different, so we won't believe anyone until she is moving! The only concensus is that she does not belong in the ICU anymore. Patients who are walking around and requesting chocolate cake don't belong in the ICU!

Picture of the Day

2009-11-19T16:10:00.002-06:00

It Is What It Is

2009-11-18T19:16:00.002-06:00

Genevieve got her pathology reports back today from last week's surgery (after the transplant, her old liver, bile ducts, and surrounding lymph nodes were sent off to be looked at closely by specialists). Turns out, the cancer was more extensive than her doctors originally thought. They found cancerous cells in the bile duct leading to the pancreas, and in one lymph node Dr. Anderson removed (out of thirty total he took out).

We don't know what is left inside. They might have cut out all the cancerous cells, they might have left a fraction of a millimeter of tissue with cancerous cells. Similarly, we don't know if the cancer in the one lymph node out of thirty proves metastatic nodal involvement, or if that one lymph node was as far as the cancer has spread. Dr. Anderson says there is no visible cancer inside, so there's simply no way to know right now.

We are working under the assumption that Genevieve still has cancer. What we thought would be curative is not. The transplant is no longer the endpoint in this journey. Going into the transplant, we knew there was a possibility of finding no cancer, or finding a very small contained amount during the transplant. But this is a third possibility we hadn't even counted upon, and we have no plan for this third outcome.

Right now, there is nothing to be done but recover from this surgery, and wait and see. There are no other case studies (that we know of) for her doctors to look at; there is no protocol. So we wait and see and take this recovery one step at a time. As Dr. Anderson says, "It is what it is."

Progress

2009-11-18T19:03:00.004-06:00

Genevieve is feeling better today. It seems as though her pain gets less and less with each day. She got out of bed on her own today, and sat in a chair from 11 until 2! It was hard and painful, but she did it. Once she got into the chair and sat for awhile, she said it felt really good. Dr. Anderson even came in while she was in the chair, and he is very pleased with her progress.

She is supposed to be moved downstairs to an observation unit today, but the last we heard, they were trying to make space for her. The rumor is that if she doesn't go to the OU tonight, she will go to the wards on the 6th floor.... But, we also heard that she would spend a day or two in the OU, so we really don't know. We'll let you know when something happens.

Picture of the Day

2009-11-18T16:24:00.002-06:00

Picture of the Day

2009-11-17T14:55:00.001-06:00

We call this masterpiece of a self-portrait, "Puking Rainbows." I really don't know how she does it, but I think she has talent of some sort.

Rough Night, Rough Morning

2009-11-17T14:48:00.002-06:00

After surgery yesterday, Vieve was in a lot of pain, AGAIN. She said it felt like a monster tore her in half. Ick. She had a rough night and didn't get much sleep. This morning she looked good, but was clearly still in pain. It seems like her pain is a little less today than it was last night. She is coherent and awake though, and told me exactly what to get her at the Body Shop. Apparently Vieve is not fruity, but flowery and nutty. I think her smell preferences suit her just perfectly.

She has some fluid in a lung (or two?? not sure) so they are trying to make her sit up and take lots of deep breaths. But doing that hurts, and she doesn't like it! I wouldn't either. So for now, her nurses are trying to make her do things that hurt, but are necessary, and that's hard for us. She won't be out of the ICU today, but maybe tomorrow. We hope, we hope.

Zip-her Up

2009-11-16T16:55:00.003-06:00

Genevieve had surgery again to "zip" her incision back up. The surgery was originally scheduled for 1PM, so they took her down to pre-op at 11:30. She sat there with Mom and Aaron for 3 HOURS! They had already removed her hook-up to her morphine pump, so while they were waiting she had some pain. She got a few shots and some happy juice to tide her over. They waited for an open operating room, then got bumped for a real emergency, which to be quite honest is fine. We probably bumped someone else when they needed to open her up on Thursday.

She just got out of surgery, and Dr. Anderson said, like last time, her insides looked great. She'll have some permanent mesh inside to help give the liver room to operate. We haven't seen her yet, so hopefully her pain will be under control and not comparable to what it was after the transplant.

Picture of the Day

2009-11-16T15:33:00.001-06:00

From Aaron's phone, taken at Lion's Club Park in Rolla, Missouri. She's a climber!

One Less Tube

2009-11-15T14:54:00.003-06:00

Genevieve has lost another tube! The NG tube that was coming out of her nose is now gone! That is suppossed to be the most annoying tube of the whole process, and it is now gone. Yea!

She also got out of bed on her own and sat in the chair for a bit again. She also asked us to take her picture and post it! We took a picture of her yesterday while she was pretending to sleep (she has a smile on her face), but this one is better because she is sans NG tube.

I've been sitting with her for most of the day, talking and laughing, letting her read through the blog (on her own), and when she got tired, she wanted me to keep reading both the blog and Facebook. She heard all of your comments from both places. They made her smile and laugh, which she says hurts, but she wants more! We watched the Michael Jackson video together and she belted out the words to the song. I even saw her dance a little boogie.

She says she is hungry, and has a craving for chocolate cake. We asked the doctor on call if they could blend that up with the "steak" she is getting via feeding tube. Funny stuff. They will close her incision tomorrow. Hopefully her pain will be better managed after this surgery. They have it under control now, with only morphine as she demands it! Crazy that she doesn't need a background, continuous drip of something, so we are all pleased. We just have to remind her to press her button when she needs it.

All is good!

Picture of the Day

2009-11-15T10:39:00.002-06:00

This picture is actually from today, and carried a message!

Good Morning, Mom and Dad!

Out of Bed

2009-11-14T16:20:00.002-06:00

Genevieve has had quite the eventful day. Libby and I read her all the Facebook posts, and we watched Bad Boys for a little bit. She even did a Martin Lawrence impression from the movie when Martin Lawrence's character is pretending to be Mike Lowery. "I'm Mike Lllllloooooowery." We cracked up. We also showed her the picture Dr. Anderson drew of her plumbing. I'm not sure that she understood what I was showing her, maybe becuase I don't know myself. I think the Dr. probably should have taken that picture away from us when he drew it, but he probably didn't expect for it to be broadcast all over the internet. What can I say?

Dr. Anderson came in (ON HIS DAY OFF!) to check on her. Libby and I were with her when he came in to see her. He asked her how she was feeling, and told her about the BIG surgery - how he decided to do the Whipple, and how the pathologist called someone else to look, and what he did during the procedure. He also said that during the last surgery, everything on the inside looked really good, and everything was holding together nicely. He called it his "redneck plumbing" job. We all started laughing, and Libby asked if he used duct tape and baling twine. Hilarious. He also said she was the poster child for large operations.

The doctor on call wanted her to get out of bed and into a chair today, for about an hour. Well, being the rockstar she is, she went for almost two hours. Rock. Star. While in said chair, she watched television very attentively, ganged up with Libby making fun of me (seems like everything is getting back to normal), and asked for both orange juice and trashy magazines. The oj request was rejected, but a quick text to the waiting room brought the magazines rather quickly.

She now has painted toenails, and pink in her skintone! Yea!

Thank You's in Order

2009-11-14T15:10:00.003-06:00

THANK YOU TO:

Rob and Sally for the chocolate. Genevieve was very stern with us when she told us we couldn't have any.

Melanie from PSC support group for the food! Those Pringles taste marvelous!

Dr. Anderson for coming in on his day off to check on Vieve. Best surgeon ever.

The people who have offered their time, their homes and beds, their chef skills, their laundry machines, their vegetables. We are still trying to sort out what we need - everyday brings a new set of circumstances. If we need help, we will come to you!

WARNING: The liver transplant guidebook says no flowers or live plants should be allowed in the patient's room. So, thank you for thinking of sending them to her - maybe send a picture of them instead? I think that would be slightly more appropriate.

Picture of the Day

2009-11-14T14:45:00.002-06:00

Genevieve requested that I post something more recent. She's feeling better... These two are my favorites from a recent bunch.

The Waiting Rooms

2009-11-14T12:38:00.001-06:00

Cindy here again. Jim, Aaron and I are all set up with our laptops on the receptionist’s desk in one of the ICU waiting rooms while Anne and Libby are with Genevieve. We rotate in and out of her room, two at a time. We found that the two ICU waiting rooms on the 8th floor are fairly quiet during the week days but full of activity in the evenings after work and this weekend. We prefer the large waiting room with 4 big windows looking south. You can see the newly built I-64, Kingshighway full of traffic, St. Louis University High School, the Science Center, and almost directly below, the roof of the parking garage with tennis courts, a playground, and pretty red-leafed trees. The windows fill the room with light, and waiting there, we can get the feeling that there is a functioning world outside the hospital.

But today that room is filled with people, including a family with 4 small children trying to keep themselves entertained, a very large man sleeping in a recliner, and TWO TVs blasting away at either end of the room—with people watching both of them. Now that’s a stress-inducing environment! Not what we need. So we set ourselves up in the smaller waiting room, which is cave-like because there are no windows. I turned the TV to a nerd station (The Weather Channel) and turned down the sound to a whisper. People move in and out of the room, rotating family members in the ICU, just like we are doing. People are on their cell phones and on the waiting room phone, seeking information or giving information, sometimes crying. I can see the worry on all their faces—eyebrows raised, eyes red. I am sure we look the same way.

The hospital is a mini-United Nations, with visitors, patients and staff of all colors and nationalities. I’ve heard various accents and languages in the cafeteria and elevators. The waiting rooms are no different. Right now a woman is talking on her cell phone in a language I cannot identify. In one corner, a woman is sitting with her possessions in a plastic bag. Some family members virtually move into the waiting rooms because they cannot afford to go elsewhere or their loved one is too critical for them to leave. I would move in, too, if that were the case. But Genevieve is getting better!!

So here we remain with our laptops, the Internet, Facebook, email and this blog. We feel fortunate that we are able to have restaurant meals in the evening and a decent night’s sleep in a hotel. Some of you have reminded us to take care of ourselves, to eat and sleep. We thank you and want you to know we read all your messages. It really does help to know you are all out there, pulling for Genevieve.

Teeth and Hair

2009-11-13T20:52:00.000-06:00

Genevieve is fluctuating between very alert and very asleep. Mostly asleep though. When I went in, she was brushing her teeth and asked the nurse for two extra glasses of water to "rinse" her mouth. Good one Vieve! That must have felt good going down your throat!

Then she said she was uncomfortable, so Aaron and I jumped up to pull pillows out from underneath her and switch the large one under her head with a smaller one. She also asked to be rotated onto her right side. So she is now perched on her right side, chilling.

When she asked me to do something with her hair, I must admit I froze. Uh oh. If I do her hair, and she sees it in a mirror, she will NOT be happy with me (For those of you who don't know me, I have a hair loss condition called alopecia. Although I have hair right now, I went for a time without. It is sort of a family joke that I am BAD at doing hair). So I said, "Uh Vieve, why don't I go get Libby for that?" She paused, looked at me, "Yeah, send Libby back with supplies." Phew. When I got back to the waiting room, Mom found a travel brush, Lib came up with some bobby pins, and I found some small hair ties. Libby went back to do Vieve's hair, and Vieve is now sporting really cute pigtails. I suppose we need to work on the nails tomorrow.

Done with the MJ

2009-11-13T19:51:00.000-06:00

Since Genevieve was on the ventilator, has a huge, open incision covered with mesh, just had a liver transplant, she was getting the "Michael Jackson Treatment" (ie. Propofol - it makes you sleep) to make her sleep. I repeat, she just had a liver transplant and is in PAIN! So, to celebrate the end of her "MJ Treatment," I present the following video (I apologize for the commercial break):

Michael Jackson - New Music - More Music Videos

Oh, by the way, Genevieve was taken off the ventilator. They discontinued the propofol, so now she is waking up a bit! She is responding to touch, and is even talking a little. She is definitely letting us know what she wants. She even cracked a little smile when Libby and I told her we went shopping for her! We really did. But we're not done yet!

Photo of the Day

2009-11-13T12:12:00.001-06:00

You'll be back at it before you know it!

Baby Steps

2009-11-13T11:04:00.000-06:00

Genevieve's doctors are very happy with her progress this morning. Her liver tests are trending in the good direction, and her liver is starting to produce clotting factors, like it is supposed to. As of 11AM, she is still on the ventilator, but they are talking about extubating this afternoon! The incision will remain open, so she will still be sedated. Dr. Anderson is tentatively talking about closing her up tomorrow. Baby steps, baby steps.

Stay Tuned.

For Genevieve

2009-11-12T21:51:00.000-06:00

We needed this. Tonight, Mom, Dad, Aaron, Libby, and I went to Gian Tony's, an italian restaurant in The Hill neighborhood of St. Louis. We haven't had much sleep, or a good meal, since.... well, since I'm not even positive about what day it is, or confident about my ability to count back to the last good meal I had... I won't try.

Gian Tony's - I think - is one of Genevieve's favorite restaurants. Our family has been dining there since the mid-1990's. It is always a treat. Tonight, we were sitting there, talking about Vieve a little bit, joking about some incidents that happened today because of our loopiness (Vieve, when you read this - Hardee's), and then about the start of Genevieve's love affair with involtini.

It started at Gian Tony's, we think, with an appetizer special. Involtini, at Gian Tony's, is spinach and ricotta cheese, stuffed into a rolled, grilled slice of eggplant and covered with marinara and cheese. Genevieve, herself, makes a very nice version. Anyway, after she had the appetizer special, every time we went she would request it, even though it was not on the menu, or a daily special. The chefs always made it for her. Eventually it was added to the menu, and she still orders it almost everytime we go to Gian Tony's.

So tonight, at first I thought that someone should order it in honor of Genevieve, but I changed my mind. As we toasted to Genevieve and her health, we decided that the next person to order involtini would be Genevieve, herself. We want you to get better. Soon. So we can all go to Gian Tony's and order a round of involtini in celebration.

We love you.

Mom's Message

2009-11-12T18:29:00.000-06:00

Cindy here, Genevieve’s mom. Libby and I, plus Katie, my niece who is a 3rd year Washington University med student, just spent some time with Genevieve as her nurse rearranged lines and drains after this afternoon’s surgery. She has the following lines coming out of her body: NG tube in the nose draining her stomach, ventilator from the mouth, IV line into her neck on her right side, arterial line in her left arm, 2 tubes draining her body cavity on the right, a nutrition tube going into her stomach (not yet operating), and then the catheter.

The nurse let us see her open body cavity, which really wasn’t too scary even for a person like me who cannot watch a nurse give me or anyone else a shot. Her incision extends across the top of her abdomen, curving down on the left side. The opening is a couple of inches wide and is packed with gauze. Over everything is a tape-like substance to hold it all together. Genevieve is under sedation, a must when she is on a ventilator, or she would be choking and gagging. She did flutter her eyes a little once, but she is not conscious.

Surely this will relieve any pressure on the new liver and allow it to function properly. Libby and I think that Vieve’s color is already pinker than before the transplant. Goodbye yellow skin!

Just a word about the doctors and nurses—everyone is THE BEST. We are thankful Vieve is here.

A few more items from today: We said goodbye today to Danica, who went home with Grandma and Grandpa Meyer for a few days. This is no place for a 3-year-old: There are people with H1N1 in the ICU. And no one under 18 is allowed in. It would have been too scary for her anyway. We took Danica’s picture with Libby’s cell phone, and Genevieve got to see it.

Number 2

2009-11-12T17:01:00.000-06:00

Genevieve is out of surgery number 2. Dr. Anderson (Cowboy), opened her up, looked around, decided everything looked good, then installed (for lack of a better word, she's not a car) a mesh screen to try to keep the liver from being smooshed.

Dad says that you can read Dr. Anderson like a book, so when he walked in to talk to Aaron and Dad (Libby, Mom, and I were at the cafeteria at the Children's Hospital. Why is it so much better?) they knew it went alright. So apparently, it went really well, there is no bleeding on the inside - the liver looks great. Genevieve will be under sedation until they close her back up and take the mesh out, and unfortunately on a ventilator. I know she hates that. Her nurses are amazing and pay her really close attention, and her doctors are taking good care of her.

Doctor/Artist/Cowboy

2009-11-12T15:16:00.000-06:00

This is the sketch that Genevieve's surgeon, Dr. Anderson, drew for the family right after Genevieve got out of surgery yesterday. I think he's a better surgeon than artist. He needs to stick to his regular job of "Awesome Surgeon who Wears Cowboy Boots While Performing Complicated, History-Making Surgery."

The top part is her old plumbing arrangement, the bottom is the new, after the transplant + Whipple. The large triangles are her livers, the stomach is on the right. The bottom one shows her pancreas in there, and an extra artery.

DISCLAIMER: I do not claim the responsibility to explain exactly what is going on in this drawing. Because I really do not know.

Laughs

2009-11-12T14:56:00.000-06:00

We just had a pretty good laugh in the waiting room. The congratulations and well-wishes are steadily rolling in. Aaron seems to be on the phone constantly, this blog and Facebook are hopping... But we just got quite an unusual Congrats! for Genevieve.

Aaron got off the phone and said, "The insurance company just called to tell us congratulations on the new liver." We all look around at each other, slightly puzzled, but thankful.

That's kind of unusual for an insurance company, don't you think?

A Setback

2009-11-12T14:15:00.000-06:00

Apparently Genevieve's liver function is fluctuating. Even though the latest imaging showed that the blood flow to and from the liver was good, no problems. Her doctors think that the fluctuating liver function might be due to pressure on the new liver. He body is SOOOO tiny that the swelling and fluid from the surgery might be constricting the liver. They will solve this by installing some mesh around her liver and over her belly. The will leave the incision open so the fluid can drain. This will be mighty uncomfortable for Vieve, so they are going to keep her sedated for a few days until everything looks better. She might be on a ventilator for the night...

This really stinks that she has to do another surgery. Ugh. This should take about an hour, and as soon as she gets back to the ICU we will be by her side again.

We just read her some comments and messages from her Facebook page, and she was smiling and chuckling, and doing a little talking. That was good to see. I will keep reading them over and over to her while she is sedated, so keep them coming. Leave comments in the comments section below the blog post, or leave messages on her wall on Facebook. She will get them.

I will keep updating this blog and Facebook, so keep checking. The blog will understandably have slightly more details.

Send your thoughts, love, prayers, positive juju vibes...whatever... She needs them!

Where is Vieve?

2009-11-12T12:30:00.000-06:00

Lots of people have been asking where they can send Genevieve gifts. Since Genevieve is in the ICU right now, and may be there for a few days, it's not a great idea to send anything right now. I don't think they will even deliver it to her when she's in the ICU... So, when she moves to the floor and has a real room, I will update with her address so people can start sending her stuff. We hope this will happen tomorrow.

However, since you can't send her anything right now, I will read her any posts to this blog, or Facebook. I know she appreciates all the support - but I definitely don't think she knows how many people are pulling for her, and sending love her way. So, for, now, leave a comment on the blog, or send a message on Facebook and I will make sure she hears your love.

Photo of the Day

2009-11-12T12:09:00.000-06:00

Rarrr! Scare away that old liver!

Picture of the Day

2009-11-11T18:06:00.000-06:00

New posts: A picture a day of Danica. For Genevieve when she wants to flip through her blog.

The Liver Dance, with a Twist

2009-11-11T16:19:00.000-06:00

I apologize in advance for typos and whatnot. It’s been a long, sleepless night, morning, afternoon…

The full (unabridged) story:

At about 11 last night, a nurse came into to suggest to Vieve that she take a hot shower, because who knows when the next one will be. Vieve took an awesome, hour-long shower, shaved the legs, washed the hair... Afterwards she put on some make-up and smelled nice. Danica was a tornado all night and would not go to sleep until after 1. She said, "I'm tired, or I'm grumpy, and I want to stay up all night." She finally settled into a sleeping bag on the floor.

The original plan was for them to come get her at 2AM for pre-op, but they came early, so none of us got the full goodbye, but maybe that was better. Aaron and Dad went into pre-op with her. They said she seemed pretty relaxed until the very end when she realized it was really happening and started to get freaked out.

From what we understand, the donor liver (I keep mistyping liver as lover, which I kind of find funny) was from somewhere in Missouri. Thank you. THANK YOU. Barnes sent a team to take it out and supervise the transportation all the way to the Operating Room at Barnes, where Vieve was waiting. She was ready to go, they had to wait for the liver to get here. The extraction team sent word that it was beautiful, which really excited us. No more false alarms because of damaged livers…

The whole night, from the time they took Genevieve to pre-op to the time Dr. Anderson came down to the waiting room, was a roller coaster. The first hump was getting a good liver and after that it was relief, until we could focus on the next hump right up the road. For me, the next hump was seeing Aaron and my Dad when they came back from pre-op. On Saturday, when they walked in, you could tell from their faces that it wasn’t going to happen. So it was hurry up and wait for them to get back for an hour and a half. They walked in, and relief.

The next two humps, we were waiting for phone calls in the waiting room with confirmation that they 1) started surgery and 2) didn’t find any cancer in her abdomen. The first phone call came, and everyone jumped a mile. Surgery started. They said they would call ~1 hour later to confirm that they would be transplanting the liver. The tension in the room grew as the hour approached, and when the phone rang, everyone jumped two miles.

This was the BIG hump. You could tell by Dad’s voice that it was good. This was huge. They said they would call again toward the end of the surgery 5-7 hours later. By this time, the hospital was starting to wake-up, which meant that we would have to share the waiting room. We had a monopoly on a big corner and had some tables and chairs pushed together for Danica to sleep on, so we were okay, but now we had to have a buzzer that would tell us when the phone was going to ring for us.

We were getting ready to settle in and relax for awhile, now that we knew we were over the big one… So you understand the reaction we had when the buzzer rang 45 minutes after the BIG phone call. Uh oh. We all jumped over Mount Everest and Dad raced to the phone. Longer conversation…

As they go through the surgery, they look at each piece of tissue they cut out under the microscope. They found abnormal cells on the bile ducts below the liver, where it connects with the pancreas. Dr. Anderson consulted with several pathologists, called his partners, and made a game-time decision: Vieve needed not only a liver transplant, but in addition, a procedure called a Whipple. This is not an uncommon procedure, but they certainly don’t do it on a regular basis.

A Whipple is a procedure they use to remove cancer in the bile duct next to the pancreas, and in the tip of the pancreas. It involves removing the bile duct and part of the pancreas, and some rearrangement of some “plumbing.” A liver transplant + Whipple has never been done at Barnes Jewish Hospital, until this morning. A few have been done (are done each year??? I’m not sure which) at the Mayo Clinic.

I can’t speak for anyone else in the room, but I was a little freaked out. I was definitely not sleeping, neither was anyone else (except Danica, who was apparently dreaming about The Wild Things). This is when the Facebook updates stopped. I’m sorry to leave you all hanging, but we really didn’t know what was happening. Each page and phone call after that we relaxed a little. The bad liver was cut out at hour 4. The Whipple was done at hour 6. We had phone calls saying she looked good and was stable in between. At 8 hours and 15 minutes, they called to say they were closing, and it would take 40 minutes. She would head to the recovery room, then be in the ICU by 2 PM (11 Hours after Aaron and Dad left her in pre-op).

At 8 hours and 55 minutes, they called to say Dr. Anderson was coming down to talk to us. When he walked in, wearing cowboy boots for a nine-hour surgery, I could tell by his body language that he was tired, but very confident. I stayed with Danica, who was sleeping AGAIN, while the rest of the family met the surgeon in a private room. Since I wasn’t there, I don’t know what was said, but from what I’ve gathered, Dr. Anderson was pleased with how the surgery went, knew for sure that it had not been done at Barnes, and explained exactly what he did with the whole thing. I don’t understand it, but he did draw a nice picture.

Genevieve was great the whole surgery, was stable the whole time. This is what I know about my sister. You can take her body through hell and back – and she will be fine. She is strong. She is resilient. She is an incredible woman. She did not even need to be given any blood at any point during the procedure. It was like she was saying – You get this bad thing out of my body and I will take care of the rest.

When she got to the ICU, a nurse asked for one person to go back to help calm her down. I am sure she was freaking out a little because of the changed circumstances surrounding the Whipple – she has to have a feed tube for awhile, until her slightly modified stomach can work like “normal” again. I hate that she has to have a feed tube, because I know she hates it. Ugh. Between Aaron and Dad, she is now calmed down (I think they adjusted her pain meds to help) and sleeping. And now, we are waiting and we’ll go (marching) two by two back to her bedside.

I’ll keep you updated.

Anne

What should I name my new liver???

2009-11-10T19:17:00.000-06:00

Can you freaking believe this? Seriously--no, SERIOUSLY--I am in the hospital AGAIN. I've been called, AGAIN. This is numero cinco, and how many friggin' people have FIVE DRY RUNS, hmmmmm? No one that I know. So, this MUST be it. It HAS to be it.

I was napping at 3:30 and was so out of it that I didn't even hear my phone! My Dad runs in from the next room to hand it to me, and I got overly excited when I saw the St. Louis area code--but sure enough, the excitement was for a reason. :) They said get up here, and get here fast!!

So Dad and I jumped into his car, since it takes us five minutes to get out the door, and Aaron left work in Blythville, AR at the same time. Mom and Danica stayed behind in Rolla to take care of 'stuff' before leaving, since getting a three-year-old out the door generally can NOT happen in five minutes or less; they got here about an hour after we did, then Aaron arrive about 20 minutes after that. The Meyer Family said they were planning to leave Orrick around 5 p.m., and we expect then at about 8:30ish; my sister Annie is on her way; and Libby will likely board the next plane from Colorado to St. Louis as soon as we get the 'this is absoLUTEly happening' news. We're all pretty sure this is IT.

Please, hope with us. I can not can not can not deal with another 'sorry, it's a no-go' disappointment. So, I must believe that THIS IS FRICKIN' IT!!!!!!! It is. It is. It. IS.

Surgery is scheduled for 3 a.m. so I'll be back and forth between Facebook and here until then. Get some rest?? Yah, right. Not sure that will happen. I have some Xanax and morphine in my system already so I'm chill, and Bendryl should be coming along shortly to add to the loopiness, and get my party started. :)

0 for 4.

2009-11-09T22:16:00.000-06:00

Long story short: I do not have a new liver. I have my old crappy liver.

The shiny new liver that was supposed to be MINE ALL MINE went through all the same testing and imaging studies that all organs do before they are offered to recipients, and was deemed *ideal* for me, even though there was slight trauma to the organ. My surgeon said he was going to do everything he could to work around the trauma to get me this liver, and said he was 95% sure that I would be getting my liver this time around.

I made it through all the same testing and procedures that I have three times before, and even got so far as getting to put on those hot-n-sexy anti-DVT compression knee-high stockings (hubba, hubba!)! I was whisked away to the OR, hooked up to all the necessary machinery, met and shook hands with nurses and doctors, signed all the right forms, and even made a nurse cry (I'm sorry! :( I didn't mean to make you cry.) when I told my husband and Dad about my wishes, should anything go wrong .

And then, my surgeon came out of the OR, back from examining the liver, with a Look.

To make this short, like I promised, the scans did not show the true state of the liver, and he found a frickin' TUMOR in the damned organ to boot.

So everyone tried to make me feel better, which of course didn't work. One very nice nurse tried to say how good it was to have a dry run under your belt, until we all told her at once I already HAD three other other dry runs, thank you very much. She backed away from the bedside slowly.

And then I got out of there, as fast as I could.

Without a new liver, again.

Happy Re-Birthday to Me!!!!!

2009-11-07T13:50:00.000-06:00

It's a beautiful day in the neighborhood, a beautiful day for a LIVER!!!!!!!!!!!! 11/7/2009 My time has finally come, my liver is here, early evening surgery scheduled, I'll be able to post again in several days, I hope. Until then, send us your thoughts and prayers and juju vibes!!!! I am very sorry that I can not call all of the people that I promised would, or get in touch at this moment with even my closest friends. I know you will all understand that it's family time, and freak-out time, and time for us to prepare for this. I love you all! I love everyone! The sky, I think, is more blue right now, if that's possible. See ya on the flip side.....

Always Something to Bitch About.

2009-11-05T15:49:00.000-06:00

Tonight—or, tomorrow morning, rather—at 12:01 a.m. my MELD score will be increased because of special circumstances for a second time, and I will be given two additional exception points by UNOS, increasing my MELD score to a 27. I will still have the highest score in my blood group at Barnes-Jewish Hospital in St. Louis, and the hope is that these two extra points bump me up to having the highest score in the city (SLU Hospital also has a transplant program), or maybe even in the state (St. Luke’s in Kansas City is the only other transplant center in Missouri).

We don’t quite know why I only get two additional points this time; the first time UNOS gave me cholangiocarcinoma exception points I was given 3—my score started at 22, and then increased to (my current score of) 25. This time, after I’ve obviously been on the list longer that the first time my MELD was increased, and over time my need for a new liver becomes more urgent, I was given: (da-da-daaaaaaaaa) two points!……… Ummm, Two? That sounds pretty measly after getting a big ‘Three (This patient needs a liver sooner, not later, man!) Additional Points’ last time. I guess I’ve been downgraded to getting ‘Two (Yeah, we know she’s getting sicker but she’s already at the top of the list, and we can’t make a liver materialize out of thin air!) Additional Points’. So, 27 it is.

I spoke with my transplant coordinator on the phone earlier today (Who, BTW, is no longer Martha! Martha still works with the Tx department, just in ‘another capacity’ now, is all I was told. Since I’m nosey, I want the dish on WHAT happened and WHY, or if it was anything at all—I adored Martha as my TC! She was so awesome! Velva is my new TC: she seems very nice and compassionate, and does her job well, but I’m just not ~clicking~ with her like I did with Martha. I felt like Martha was my friend—as much as a Transplant Coordinator can appropriately be a patient’s ‘friend’—we were close in age, she also has a three-year-old at home, and I felt like I could call her just to have her help me calm down in the middle of a TX freak-out. :( But she’s GONE, and my new coordinator is Velva… And to re-cap, I talked to her today…) and asked her to please make sure I was told the correct new score first and, if so, why was it just two points, not three? I was under the impression that with the cholangiocarcinoma treatment protocol and resulting ‘exception points’ that patients like myself were given an additional ‘three points every three months’ until they were transplanted. Well, I was obviously wrong. (On another side note—I bet Aaron and my Mom BOTH will make me say that last little bit out loud to them, just for the fun of it, sometime in the next couple of days. ;) )

Good grief, what ramblings! Every one of you who has made it this far into my posting gets a Gold Star. If you read until the end you get TWO Gold Stars! Or it could possibly be one blue star, and Diego’s Rescue Pack. Anyhoo, just PayPal me $4, which covers the shipping and handling. Gold Stars (or random other stickers) for Great Readers are **FREE**. :)

Now, back to the story about the exception points. So Velva, her curiosity having been sparked as well, starts digging around some UNOS files in her computer. She tries to manually raise my score to 28 and she gets a pop-up box from UNOS saying something along the lines of, ‘exception points of up to 10% of the current score may be requested’. So that would mean that when my score was 22 they were able to request 2.2 points (and MELD scores are whole numbers only). This somehow got rounded up to three, and my score became a 25. 10% of that is 2.5, so one would just ASSUME we would round up again, right? Which would then be three points; added to 25 makes 28, like we were originally TOLD—as recent as last week!!—my next MELD would be. But nope. No, somehow UNOS decided, during the first petition to get CCA exception points added to my score, that 2.2 should round up to 3. Which, when working with something as serious as a liver transplant list, makes sense to me. If the patient is sick enough or has gone through enough awful treatments to give them two tenths of a point, by golly they ought to get those two tenths; if you can only have whole-number MELDs, then round the darn thing up! But alas, this time I apparently didn’t actually deserve my five-tenths of a point to budge my exception points up from 2.5 to 3 (Wha…..? “Sorry, Mrs. Meyer, we decided your cancer didn’t grow enough this quarter to deserve the five tenths of a point…Bummer.” {And yes, UNOS does *too* say ‘Bummer’ in their formal communications.}). They just kinda forgot about the whole ‘.5’ thing and rounded down to 2 points—and my MELD score, as of 12:01 a.m. November 6, 2009, will be 27.

Now granted, there’s gotta be some other process going on here—something else goes on at UNOS that none of us are privy to, that Velva and the doctors don’t even know about—or at least, something that Velva doesn’t know about so therefore she couldn’t very well tell me—that affects these scores. Right?? Because the explanation to this one CAN NOT BE , “Sorry, dude, we have some incapable folks doing the math around here, and they forgot what they learned about rounding in elementary school. It’s a total bummer that these folks are affecting other people’s life and death situations, and that they mess it up sometimes because they can’t do math.” (Come on—if they say ‘bummer’, they can say ‘dude’ too.) Please, will someone explain to me what else is going on with this score?? Does someone, anyone out there reading this know how UNOS calculates these exception scores?

As we all know, every good story has a moral at its end. Can anyone guess the moral of this story? Anyone? Anyone? Third and fourth grade math is important, people!! Those little decimal points MEAN SOMETHING. Decimal points can CHANGE LIVES. So, you don’t remember how to round? Go back to elementary school please, and take the UNOS decimal point people with you.

My sincerest apologies to UNOS; yes, I do realize I am being an ass-hat, whining about UNOS—they are truly a fabulous, wonderful, life-saving organization; but I am exhausted from this e-ffing waiting!! Please, can I use that as my excuse again? I think I should be able to play the sad, sick, and pouty ‘I’m still waiting for a new liver’ card until the day I get a new liver. Ahhhhhhhhhhhhhhh, that ranting feels really good. Or, could be the narcotics kicking in.

Laters.

Chemo. Again.

2009-05-13T10:43:00.000-05:00

My oncology nurse just called me--labs are in from yesterday, and my numbers are finally low enough to start the next chemo. So, I just took my first dose. ARGH!!!!!!!!!!!!!!!!!!!!!! Just when I'm having some good days, I have to start this bullshit all over again. I know I have to take it--we have to be sure the cancer is gone, and stays gone until transplant time. I know that. But I HATE IT ANYWAY. I don't want to feel like pure shit put through a meat grinder and served lukewarm. (I know, that's being dramatic; but there's really no sensible way to describe the pure shittiness of this chemo CRAP.)

Still a 22. Still waiting. Bags are packed and we're ready to head out as soon as the call comes.

22.

2009-05-06T17:00:00.000-05:00

I had my hair done this afternoon! It felt so good, and was badly needed after all the chemo so far. I had my phone ringer turned up to 'high & vibrate' the whole time, in case I got the call about the 22.

Well, the call came to my house, when I was gone! I arrived home to a message from my nurse coordinator saying that my higher MELD score of 22 has been APPROVED! I am officially listed for liver transplant with a MELD of 22 now; my understanding is that the call could come at any time (dependant, of course, on about a zillion factors completely out of my control--this is not a good place to be for a concrete-sequential, anal-retentive Type A, lemme tell ya!). I'll be calling my NC tomorrow morning to chat about this further, and I hope she'll have some more details for me.

This is getting super scary. My liver and bile ducts are going to be removed from my body, cut into a zillion pieces to view the damage, and a new liver--an organ from someone else's body, someone who has given the most precious gift one can give to another human being--will be put back into me to keep me alive. Wrap your head around THAT.

Argh.

2009-05-05T14:17:00.000-05:00

I'm nervous, I'm completely on edge, all I can think about is getting that phone call saying 'your MELD of 22 has been approved'. This is making me so crazy, I can't even begin to describe the all-consuming-ness of it. Yes, 'all-consuming-ness' is too a word, I just made it up.

What the hell is it going to be like, then, waiting for the REAL call? I may go insane before then. This is awful. You can tell me it will 'happen when it happens' or 'when the time is just right' all day long, and you won't be able to direct my mind anywhere else. Argh.

Listed.

2009-04-30T17:31:00.000-05:00

As of this afternoon, I am officially listed for liver transplant.

Apparently our insurance company did, in fact, put up a good fight, and it hasn’t been just ‘formal paperwork’ that we’ve been waiting on for the last week. According to my nurse coordinator, they denied my need for a transplant several times. After more than the usual share of paperwork, several of my doctors had to testify to a medical review board with my insurance company justifying my need for the transplant. They finally pre-approved me today, and this afternoon I was entered into the UNOS database with a MELD score of 7.

The paperwork was sent out to UNOS today to approve the exceptions points, which will raise my score to a 22. That will probably take a week, but they formally have up to three weeks to respond to the request. My NC told me that with a score of 7 I cannot expect to be called for a transplant anytime soon, but that will change when my score increases to a 22.

So I’ll be taking this next week or so to do things that need to be done, and pack up some ‘get in the car and go’ bags for Danica, Aaron, and myself. More hospital time is in my future, but it will finally, finally, be for the Big Surgery. I am so tired.

And now, we wait.

Almost Good to Go.

2009-04-21T20:25:00.000-05:00

This afternoon I spoke with my transplant nurse coordinator at Barnes.

My hospital’s transplant committee met this afternoon, and they have given the go-ahead to put me on The List. A couple of formalities have to happen before it’s official…

First, they have to get preliminary approval from my insurance company to have me listed for transplant. This is usually just a formality, and we don’t have reason to think they will fight this—we’ve been working with them since this past October telling them that the protocol culminates in transplant, and have even already worked out a few kinks in our policy with covering parts of the transplant. Even though we’ve had to fight them on some small issues, I don’t think this will be anything but routine paperwork for the transplant office.

Second, I currently have a MELD score of only 7, and we have to apply for ‘exception points’ within my transplant region (a group of eight or so states in the Midwest) to increase my score to a 22. One’s MELD (Model for End-stage Liver Disease) score determines where one will fall on his/her blood group’s List. Because I have gone through the cholangiocarcinoma protocol, I will (in all likelihood—this is another one of those routine formalities) qualify for the exception points to place me higher on the list, in order to receive a transplant sooner. My NC said she hasn’t looked in detail at my blood group’s List yet, but as a ‘B’—a somewhat more rare blood group—I should be at or near the top of the list. This is both good and bad; even though I will be listed pretty close to the top of my list, if not at the top, donors in this blood group can be fewer and further between as well, sometimes making the wait a little longer. It didn’t make it sound too bad, though, when she said ‘it could be a couple of months’. A couple of months I think I can handle… I don’t really want to think beyond that kind of time frame, at this point.

Both of these formalities should happen, she thinks, by the end of THIS WEEK. Wow, that’s fast. At that point they send off my info to UNOS and it becomes ‘official’, from what I understand. We will then come up with an official telephone list for me—all of my possible contact numbers, and in what order they should be called if an organ becomes available—and then, we wait.

Today my doctors also gave the go-ahead for me to start my final chemotherapy, which I will take as a maintenance drug until I receive the transplant. It’s an oral form of chemo this time, as opposed to weekly infusions or continuous infusion, as I’ve had before. I am really hoping a little pill—as opposed to an intimidating bag of toxic liquid—means it might be easier on my body… I guess we will just see about that. The pill is called Xeloda, and is sort of an oral form of the chemo I had as an infusion during my 5 weeks of radiation (the actual drug is called capecitabine, but it is metabolized into 5-FU in my body; 5-FU is the chemo I had via continuous infusion). They said my oncologist might not want to start me on the drug immediately, since I am just over 3 weeks out of surgery—that will just be her call. I have an appointment for blood work tomorrow morning, followed by a visit with the oncologist, at which time she will decide if/when I start the new chemo. Blech.

More updates to follow, as I hear things. This may be an eventful week—stressful, at the very least.

Nearly Listing Time.

2009-04-17T23:11:00.000-05:00

So, what’s the point in having a blog, if you don’t update it? Dunno the answer to that, except for: sorry folks. We are waaaaay beyond that first week, and much has happened since then.

The five weeks at the lodge ended up being not-that-terrible. I’ve had more fun in my life, but it really wasn’t that bad, in the end. Basically, I slept in late every day; took my sweet time getting ready in the late mornings; took the shuttle to the hospital for treatment around noon; hung out with a book until 2:30 treatment time; came back to the lodge around 3:30 p.m. and fooled around doing pretty much anything I could find (WOW, thanks for all that mail!!) after treatment until evening TV shows came on; watched lots of TV; fooled around on the Internet until All Hours; and slept some more. Lather, Rinse, Repeat. It was pretty boring, and pretty much the same every day. I had a weekly Tuesday evening dinner engagement with my Mom and Dad and Grandpa that was Very Nice, a couple of visits from siblings and friends that punctuated that daily same-ness, and weekly trips with Aaron to Kansas City for Danica-Love that broke it all up a bit.

At the end of the five weeks we came home—at LAST!!—to only return to St. Louis, and the hospital, within the week (I think?? I’ve lost track of time, at this point…). This time: another BOWEL OBSTRUCTION—again, not even liver related—just like in January.

This time it was not emergent (read: imminent bowel death), like it was in January, but just a ‘run-of-the-mill’ obstruction. So, we waited it out for two whole weeks, the obstruction never resolving on it’s own, before yet ANOTHER bowel surgery. My transplant surgeon came to me with good news, though, this time: he said, you’ve been through enough, let’s just do the lymph node sampling laparotomy for the protocol at the same time as straightening out that bowel, ok? It’s a deal, I said! I was going to have to have the surgery for the protocol in a few weeks anyway, getting it all done at the same time—just a few weeks earlier than expected—was a nice break. [Can you call opting for bowel surgery ‘getting a break’? Heck, it was a two-for-one deal; I think it was a break.]

So. NOW. We are home again, and I’ve been officially out of the hospital for a couple of weeks, and I’m doing fine, I think (Wait, doing the math… Has it been a couple of weeks yet? I think I was home a week on Wednesday, but I’m not completely sure about that math… Call it the drugs, ok? Please?). This past Tuesday I spent a full day at the hospital for all my pre-transplant screening; many of the same tests as for entering the protocol, and we added on a stress test for my heart, to be sure it can handle the Big Surgery. I was told it would be ‘a week or two’ before the transplant team at my hospital made the decision as to whether I am ready to be officially listed for transplant, then it takes UNOS (The United Network for Organ Sharing, the ones in charge of doling out bright and shiny new livers… er…. Well, a new-to-me liver, anyhow…) a ‘couple of weeks’ past that to decide if I am a fit candidate for one of those scarce organs. So, I guess we’re looking at 3-ish weeks until potential official listing time.

And that’s just about all I have to say about that.

Addy.

2009-02-13T18:05:00.000-06:00

I can't believe week #1 is over! It dragged on as it was happening, that's for sure. Now, this is me napping (ha!), killing the time until Aaron gets here this evening. We're heading to see my precious baby girl, who I miss so much it ACHES, in Kansas City for the weekend. We'll leave tonight from here and arrive in the wee hours of the moring. And I will climb into bed with Dani and snuggle her anyway, no matter the time, because I need to smell her neck and love her so she knows it. (Can you hear the tears hitting the keyboard? I though this was going to be a nice break--instead I am a MESS.)

For those of you who have asked, here is the address where I am staying during the week:

Genevieve Felts Meyer
c/o The Hope Lodge Center
4215 Lindell Blvd.
St. Louis, MO 63108

The rules: no live plants or flowers, and nothing that has to be signed for. Anything sent through regular mail is just fine, and will be much appreciated. :)

Prescription to Shop.

2009-02-10T14:52:00.000-06:00

Well, we're here at the Lodge, and I think I am going to go crazy here. We had to go to an orientation last night, and they have some pretty dumb rules—for one, I can't have friggin food in my room (I’ll show them, I have some apple juice and donuts in here now, ha!). The Binder O' Rules I had to read when I got here was a bit ridiculous. We have curfews, and a little magnetic board by the front door where we have to place our magnet next to the 'in' or 'out' by our name, so we can be accounted for. Seriously. I am not allowed to 'entertain visitors' overnight other than my one caregiver (Aaron, of course), but I can have daytime visitors. So it’s not going to work out now for the couple of friends who were going to come stay for a few days, which I am bummed about.

Treatment was ok yesterday, pretty uneventful. Big cold room with giant scary-looking machines that made lots of noise. It didn't hurt at all, it was just like an x-ray; I've been kind of nauseous since the treatment but nothing awful. A little compazine is taking care of it. Chemo hook-up was also uneventful. My pump is heavier than I expected, but fits perfectly into both of my new bags.

[Fun side story from last Wednesday: My radiation oncologist was asking me, 'so, have you seen the little fanny packs that the pumps come in?' We laughed about how ugly they were, and he made some comments about how I'm not his typical patient, I seem to care about fashion, and he wasn't really sure I would be happy wearing that ugly pump pack around. So he said, 'I would recommend you go out any find yourself a little bag or a purse or something that you like and is your style to carry your pump in, you'll feel much better about it.' I laughed and asked, 'Are you giving me a prescription to go bag shopping?' and he told me yes, he was. :) So we went to the mall after the appointment, and I bought two new small over the shoulder purses that are going to act as my pump bags! One is a nice lime green leather, one is a casual khaki with a red and purple flowered pattern. That made me happy.]

Today’s treatment was much easier; I knew what to expect and there was good music playing in my radiation room when I got there (Nirvana Unplugged). I get to choose my music everyday and my techs are cool, and overall it’s a pretty short amount of time that I’m in there, so the actual treatment stuff isn’t going to be that bad. The extra time on my hands surrounding the treatments might be more boring than relaxing, but I will deal.

I've cried a lot the past couple days, between leaving Danica and the treatment. Still in the dark place, for the most part, and wavering between trying to find my way out and just pouting all the time.

We're a Go.

2009-02-05T23:59:00.000-06:00

My CT from yesterday lined up with my previous radiation simulation, and my bloodwork looked fine; so both oncologists say I am ready to start my radiation and 5-FU treatments on Monday February 9th. We're mostly packed and will be leaving tomorrow.

The After Surgery Bluuuuuuues.

2009-02-03T18:35:00.000-06:00

I think the post-surgery blues are pretty well documented, aren’t they? I remember having a bad case of them after my colectomy in 1999; I have a milder case at the moment, that I am trying to let run their course. Oh, you didn’t know I had surgery? Well I guess that’s because I suck at updating my blog when I am down in the dumps. Here’s the story…

On Thursday morning, January 15th my stomach started cramping the second that my coffee hit my stomach. Slightly odd for it to happen at first sip like that, but not way-out-there odd; I was six days post-chemo, and stomach cramping has been a frequent side effect for me. I took the medicines prescribed for the situation, and didn’t think much else of it as it continued on and off throughout the day.

On Friday morning the same thing happened again, with a bit more intensity. Took my meds again and went about my day, which included an early afternoon lunch and play date with some of my girlfriends. After lunching (ok, ok, I can just hear my girls calling me out right now; I was snarfing. I was hungry and felt like eating—I take advantage when I feel good like that post-chemo) the pain intensified and I started to notice it even more. I decided I would nap it off while Danica was napping, so as not to miss a special Girl’s Night Out that night, scheduled especially for a time when I would be in town and feeling well enough to go.

Well, so much for GNO. As the afternoon went on the pain intensified, to the point of me making arrangements for Danica to go to a friend’s, and calling Aaron at work saying, ‘please don’t dally on your way home, I need to go to the ER.’ I knew that sort of pain, and suspected a bowel obstruction—I’ve had three or four in the past—but then again with everything else going on health-wise with me I couldn’t be sure what *exactly* was hurting. So when Aaron got home, off to the ER we went.

The pain was rapidly intensifying, to the point where I was a bawling baby in the ER waiting room. Now, I’m of the opinion that a little bit of drama and exaggeration can help you see a doc faster at the ER, but it was all real this time; my pain was about a 17 on that scale of 1-10 they ask you about. I think they could pretty much tell that by looking at me, and I think it was one of my fastest experiences at the Dyersburg ER. I was in, saw a doc, and got pain meds in probably just about an hour, from the time we pulled up at the hospital doors. Not too bad.

A CT confirmed that I did in fact have a bowel obstruction, and I was admitted to the hospital. A hazy two-and-a-half days went by (lots of pain=lots of Dilaudid) in which I saw several doctors (the general consensus was ‘wait it out’ as bowel obstructions, by and large, pass after a few days with complete bowel rest), had several x-rays, got a fun NG tube shoved up my nose and down my throat, and puked for what felt like two days straight. There was a catheter in there somewhere too, TG, as I couldn’t even get out of bed. After not improving—and actually feeling like I was worsening—my Dad encouraged me to ask for a transfer to Barnes-Jewish in St. Louis (‘my’ hospital where the whole cancer and transplant protocol is happening) on Sunday morning.

A few phone calls, a long ambulance ride, and about 12 hours later, I was in a bed at Barnes. My parents met us there to get Danica and stayed for a few minutes, until the doctors all started coming in, then we gave goodnight hugs and kisses and they headed back to Rolla.

Now, since Barnes is Washington University’s teaching hospital, it is not uncommon to see five doctors and answer questions about one’s history to each one of them before ever seeing an attending; but not at 10 p.m. One after another I saw interns and residents, and then a surgery consult, and then another (a surgery consult at 10:30??), and they all asked about my pooping habits and eating habits and puking habits, and pressed on my extremely distended belly until I cried (it HURT still). Then seemingly out of nowhere (for someone on a lot of Dilaudid, anyway) an attending from colon and rectal surgery appeared at my bedside after midnight, telling me I needed emergency surgery to unkink my DOUBLE bowel obstruction, and prevent imminent bowel death.

Whoa. Wait a minute. I’ve been in the hospital for three days now, and nobody has said anything yet about a DOUBLE bowel obstruction, bowel death, or imminent surgery. I had the surgeon talk to my Dad over the phone and explain the situation and he said yes, you need to do this now—this is why you needed to go to Barnes. They know your case, and they are the best at what they do—you’ve gotta listen to them.

The surgeon explained that I was about the worst possible person to do surgery on at that moment, and believe her, it wasn’t just to get her kicks at 2 a.m.—this was serious, and if it were at all possible, she would NOT operate on me at this point. Being 10 days past my last chemotherapy treatment, my body was at it’s very lowest point before my blood counts, and my body’s ability to heal itself, would start to improve again; bad, bad time for surgery. She explained the best-case scenario: she goes in, is able to unkink the bowel simply by manipulating it, and doesn’t have to cut any bowel. But if she had to do ANY cutting of the bowel to resolve the obstructions (which was not unlikely) she was very worried about it being able to heal itself again, and said it would necessitate the creation of an ostomy—which would have to stay past transplant time, at least. WHOA again—this is all out of nowhere, and I was hearing it all without Aaron at my side, as he was sleeping in the car (he can’t stay with me when I’m in a double room, hospital rules).

We tracked down Aaron and got him back to my room while I freaked out, and my nurses dosed out the Ativan. The surgeon explained everything again for Aaron when he got there, and said that an OR would be open soon. She also mentioned that my own surgeon would be there with her telling me all this, except that he was in a double transplant at the moment at Children’s Hospital. Well ok, I guess that’s forgivable. As I recall (remember, lots of drugs involved), he did show up before I actually went into surgery, telling me he had consulted on all this and it was the right choice. Which would have made me feel better, if the ‘big honking dose of Ativan’ (as my wonderful nurse with the Australian accent put it) hadn’t already.

The next several days are pretty fuzzy for me. The surgery was successful, and was the best possible scenario: she went in, unkinked the bowel, and closed, without having the cut anything but my belly (stem to stern, again). There were some hallucinations, with all the big time meds I was on, and I had an ugly allergic reaction at one point to something-or-another: my face blew up and I had a nasty rash all over my body. I don’t think they ever really figured out how that happened, but I believe one allergist said it was probably the antibiotics I had during surgery. The doctors and nurses kept me as comfortable as possible, and all went pretty well that first week after surgery. My guts started moving again a little slowly, but everything did get going; I started eating a little bit; we got the pain mostly under control with oral pain meds; and they FINALLY let me out on Day 12. Gawd, what a long, awful stay. Hospitals get so old after about, oh, three minutes.

Dad took out half my staples and replaced them with steri strips last Friday, when we left Rolla, and gave Aaron a lesson in doing the rest when it was time; last night we took out the rest, and steri strips feel soooooo much better on the belly than those ole’ staples! I am still pretty sore if I do anything, but just sitting around the house isn’t so bad anymore. Car rides suck, and I can’t lift anything still, but that will all get better soon.

So now I just need to get rid of this funk, and keep on healing. Tomorrow is a quick trip into StL to see both oncologists, in preparation for starting radiation and chemo on Monday—that was obviously pushed back a couple of weeks with this whole surgery and hospital thing. We plan to leave Dyersburg this Friday for a long weekend in Kansas City, and will leave Danica there with her Grandparents when Aaron takes me in for my treatment on Monday morning. My plan to stay at the Hope Lodge for five weeks is the same; Aaron will travel back and forth, as he will still be working his four on/four off schedule during this time.

I’m Sorry! and Getting My First Tattoos.

2009-01-13T17:12:00.000-06:00

I haven’t been in a blogging mood folks, sorry. My girls in Dyersburg got onto me today to update everyone, so, this blog is for you gals! :) I’m in the car on the way home from Rolla to Dyersburg as I write, for a week’s stay until my next oncology appointment (the 21st) and then a long weekend in Kansas City before the next leg of The Journey starts. The car seems to be a good place to write these posts, so here I go.

Tons has happened since the first of the year—I’ll go chronologically. First, I had an ERCP and stent replacement on January 6th; everything was routine, except that I was in some pain post-procedure (more than my usual post-procedure pain). They kept me in the hospital for suspected pancreatitis (which turned out to be no pancreatitis, thank goodness) for a two-and-half day stay. Blah, that was fun. On Wednesday I was supposed to have three appointments that got tapered down to just one: a port revision, which I talked about in a previous post. That was a barrel of monkeys! I’m still a bit sore in my port area, but mostly recovered from that. I was also supposed to have chemo that day, but due to ~someone wanting to make more money somewhere~ one can’t get outpatient chemo while registered as an in-patient at the hospital, so that was put off until Friday. I was also supposed to have my radiation simulation that day, but for other reasons (I hadn’t been eating and drinking normally) they put that off until Friday as well.

After they sprung me from the Big House, we headed back to Rolla on Thursday afternoon and relieved Annie—who had been taking care of Danica since about dawn on Tuesday, bless her heart—of Danica duty for a few hours. Aaron jokes that she was pretty much curled up into the fetal position when we arrived, ha ha. Tiring, isn’t it, Anne? :)

Friday morning we headed back to StL for my radiation simulation. I had an appointment with the resident in radiation oncology who explained pretty much how my treatment is going to go and what was going to happen that day with the simulation, and then I drank a LOVELY pint of incredibly viscous ‘Dreamsicle’ (why do they even call the contrast that?? It ain’t no dream to drink, lemme tell ‘ya) before my CT. The plan was to take a CT scan of my entire abdomen and some of my pelvic area to be able to determine where to focus the radiation, and how best to avoid all the surrounding organs and tissue. My radiation oncologist does most of his work right now (during my break from treatment): he examines my CT and does some big math and physics to figure out how to aim and arrange my dosages into the right number of treatments.

So I went into the simulation room after drinking the crappy crap, and got into my pretty gown. They laid me down on a hard surface with a big black plastic trash bag underneath me and did a little chemistry—put together two containers of liquid and shook—then quickly poured the mixture into the bag underneath my torso. It bulked up and turned into Styrofoam around me to create a torso mold to help hold me into the same position for each treatment I have. After that I had to have an IV put in for contrast—still not sure why they couldn’t use my port, but they couldn't for some reason—and the nurse who *tried* to put it in blamed chemo for my 'awful' veins. I dunno about that, but the two places she tried hurt like a...... Like an IV shouldn’t hurt. Gah. Then they did the CT and marked on me with a beautiful blue paint marker that I am supposed to keep from washing off for two weeks!! There’s an X on my belly, and one on either side of my abdomen—this helps the radiation therapy techs line me up correctly when I go in for treatments. After getting a beautiful shade of Smurf painted on my belly they asked if I wanted tattoos—just a small dot in the middle of each X, where the lines cross—to help the techs know where to position me so I’m not responsible for making sure the blue paint marker stays on me for the whole five weeks I’m being treated. When I asked, ‘will it hurt?’, the gal said, ‘less than getting that IV started.’ I was sold, as the paint marker after every few showers sounded pretty much like a pain to me.

So my first tattoos aren’t something fun I did on a Friday night after a few drinks with friends. And I didn’t do something cute and matching with a friend or one of my sisters. I got three dots that look like freckles. Nice.

After the radiation simulation I spoke with my radiation oncologist about a few things, and we scheduled my first treatment for January 26th (I'll be getting radiation five days per week). After my radiation treatment that day I will meet with a home health chemo nurse who will get me hooked up to my next chemo, called 5-FU, which will be infused continuously, 24/7, for the duration of the radiation treatments. I will wear a pump in a nice stylish fanny pack (there goes fashion…) and get my chemo and dressings changed out once per week during that time. There’s a possibility that there will be a final three to five radiation treatments after the five weeks is complete, depending on the dosage I tolerate and if they are able to schedule the full dose to be completed in the five-week time frame (what we’re shooting for with the radiation treatments is an overall maximum dosage, which is cumulative; if I haven’t reached that total yet by the end of 25 treatments there may be a few extra to do).

During the treatment, since we live three hours away from the hospital and my parents live 90 minutes away, I will be living in StL at a free dorm called the Hope Lodge—it’s run by my hospital and the American Cancer Society, and is set up for patients like me who have to travel in and are having treatments everyday. It will be nice to do so much less traveling during this time, because even just riding in a car when you’re sick is tiring.

So there’s the update, sorry it took so long. I would love to end this post with a witty observation or profound statement but as I said to a friend the other night, “I’m all out of smart for the day.” Ciao.

Happy New Year!

2008-12-31T23:20:00.000-06:00

I am writing this from the car on the way home from today’s chemo session because the sheer boredom of sitting in the car for one…more...minute without something to do is literally about to kill me (*that literally is for you, Aaron). This is our sixth hour in the car today (first Kansas City to St. Louis, now StL to Dyersburg), and about the five hundredth hour in the last several months—and I can’t be sure that’s an exaggeration.

Today’s hospital visit was mildly eventful! Lab work looked ‘beautiful’ according to my terrific chemo nurse Renee, and chemo pre-meds (steroids and anti-nausea) were going smoothly until I was unplugged quite suddenly and sent down to Interventional Radiology for a port issue. Here’s the story:

My port has been doing something funky; that’s the medical description for what’s been going on. If you have never seen a port in someone, this is what it looks like: http://images.google.com/imgres?imgurl=http://www.cfpage.com/files/portpics/PortChest2.jpg&imgrefurl=http://www.cfpage.com/index.php%3FContent%3Dportchestpics&usg=__zm6yTRhYHK4NBUMikKRify0SAFo=&h=326&w=500&sz=16&hl=en&start=2&um=1&tbnid=XYQ0MJE_vqxHJM:&tbnh=85&tbnw=130&prev=/images%3Fq%3Dimplanted%2Bport%26um%3D1%26hl%3Den%26rlz%3D1T4ADBR_enUS263US263%26sa%3DN That round part sticking up—the reservoir-disc-thingy (again, official medical terminology)—is round on the top (the part that shows) and is flat and about the diameter of checker on the back part—the part that is supposed to be stitched in and nestled happily into the tissue beneath my clavicle on the right. Well mine is no longer stitched nor is it nestled happily; it is free floating just underneath my skin, and keeps flipping over and twisting around with just the slightest movement of my right arm and shoulder. As in, I reach to wash my back in the shower and it flips, or when I wake in the morning it has flipped in my sleep. The port itself doesn’t hurt, but the flipping crap is not too comfortable.

As I was getting ready for chemo this afternoon we went through the usual hospital ‘Time Out’ procedure: confirm your name, state your DOB, what are you here for today, and do you have any questions. I said well yeah, actually, I’m wondering if what my port is doing is normal.

Uh, apparently it’s not. The nurses and docs were concerned enough to stop my pre-meds and send me down to IR before my chemo even started dripping (they hopped to it because I said hey, I’m from TN and can’t exactly stop back by on Friday to get this checked out), but then after examination decided they weren’t concerned enough to stay late into the afternoon on New Year’s Eve to do a port revision. They were getting good blood return, flushing it successfully, and none of my meds were actually leaking out of the reservoir or tubing inside me (which we would know was happening if I started screaming in pain from the burning sensation of the chemo leaking out of the tubing and seeping into the wrong parts of my body, apparently).

So next week is now going to be an even more full medical week. On Tuesday I have an ERCP for a routine stent swap-out, then on Wednesday morning before my chemo I have a port revision. They will sedate me—not nearly damn enough, based on my previous experience, but enough to keep me from lashing out at them as they cut into my body while I’m awake—then go in and make sure the tubing is all straight and I haven’t twisted anything up in there, and they will re-stitch the discy-doo to the surrounding tissue, in hopes that it stays in more securely this time around. How it came loose the first time is only slightly mysterious—that thing hurt like the dickens for a week after I had it placed, and I avoided activity and lifting on my right side until I was good and ready for it; my nurse said, though, that hauling around a three-year-old would certainly be enough to loosen it up.

Then, Wednesday afternoon is my radiation treatment simulation. But explaining all that will have to wait for another post, as we are about three minutes from pulling into the driveway (and actually, as I am editing this, getting pretty close the New Year, Central Time). Ahhhh, home at LAST, if only for four days. Happy New Year, everyone. If I didn’t feel like puking I would raise a glass of anything to health and happiness… A little bit more of both for us all, at the very least.

*It just literally annoys Aaron to bits when people use the word literally when what they literally mean is figuratively. :)

All the Latest.

2008-12-30T03:06:00.000-06:00

Well, it's been quite some time since I updated anyone on anything. No better time than 3:30 a.m. when the insomnia hits, right? Yeah.

We are in KC, MO right now visiting Aaron's family, after first having our small family Christmas in TN, and then Christmas with my parents in Rolla, MO. Poor Danica will be so confused about this holiday as she grows up: three Christmases in three different locations, Santa found her in two different places, and too many presents. Yes, there is such a thing. But as I have been reminded, what are aunties and uncles and Grammas and Grampas for? Santa and the family were all very good to all of us this year, and we had terrific (as usual) celebrations with everyone. This year I again made the request for NO battery-operated toys for Miss D and suggested toys for imaginary play, and the family came through with flying colors. She definitely has enough to keep her happy for the year!

I had my first chemo of this second cycle last Tuesday, the 23rd of December. Usually chemo is on Wednesdays, but the cancer center was closed on Christmas Eve and Christmas Day; logistics worked out the best to have it a day early rather than two days late. I felt pretty crummy the afternoon and night of chemo, and have been feeling just generally ick and tired since then, but this round wasn't bad at all. I truly could have it much worse--there are some nasty forms of chemo out there, and I don't have one of them. I have noticed that my hair is thinning a bit; after showers there is more hair in the drain than usual, and combing and brushing has been pulling out more hair than my norm. It's not noticeable to anyone but me, so that is a good thing; help me hope that the hair effects stays this mild, please? Thanks.

We will be staying here in KC for one more day, and leaving on Wednesday morning for my second chemo treatment in this cycle. Mom will meet us in StL to take care of Danica; while I'm having my infusion and Aaron sits with me, they will go to their usual spot, the St. Louis Science Center--one of Danica's all-time favorite places. She adores anything and everything Dinosaur there, although the two story animatronic T-Rex was a bit much during her first few encounters. :)

In other news, tomorrow is Danica's third birthday! Yet another reason for the poor darling to be confused about why so many presents come at so many different times at the end of the year. We keep asking her, 'Do you know what tomorrow is, Danica?' Her response: 'December Thirtief!' Not, 'My BIRTHDAY!' or anything about cake and presents, but 'December Thirtief!' She has that date down-pat. :) When asked, she declares that she will be three years old and holds up the obligatory three-finger reinforcement. Just so she can be sure everyone knows how many THREE is, yanno. Oh, how I would love to put forth the effort I have in all years past and do a little party, make a pretty cake, and go all out, but that energy isn't there this year. We bought a box of confetti cake mix and I toyed with the idea of using a teddy bear cake pan and doing all the fancy decorating myself but..... Well, I may just bring home a Price Chopper special instead. I just don't have it in me to go all out this go-round, which Aaron's Mom keeps reassuring me is understandable. Yeah, I know it is, but I'm a Mom and guilt comes with the job. It makes me sad, but I know what she will remember is her birthday princess tiara, and the new doll stroller, diaper bag, clothes, and baby doll accessories that await her during tomorrow's quiet family celebration. Not that Mommy is too sick to throw her a party.

Sigh....

Ho Hum.

2008-12-19T16:08:00.000-06:00

I have the ho-hums, if that is even a real thing. I'm in this place where I get into a funk and just wear pajamas for several days and don't have enough energy to shower and blow-dry my hair and just feel pretty blue, in general. I am just so tired my body won't let me do anything but park on the couch. Then my moods get blue because I am so bored and tired, and it's a horrible cycle. Not really doing the 'woe-is-me' thing, just doing.... Nothing. I am so tired I can't get out bed when Danica wakes me up in the morning so I get up, get her some juice, and put on a movie for her and then doze through the whole thing. She wakes me up again when it's over and I get her some breakfast and some water and put in another show and then doze again through that one. It's an awful feeling, to not be able to care for my daughter like I want to be able to do. She's really getting the shift right now, poor thing. She hugs me a zillion times a day, and asks, 'Did that make you feel better Mommy?' It breaks my heart.

There is a pattern here: I always get like this when my PSC is starting to act up and I either need a new stent (if I don't have one in), or need a stent change (I'm guessing my current stent, overdue to be switched out, is getting a little blocked). The itching usually accompanies this tired, blue phase; the itching's not really bad right now, but is becoming noticable and bothersome some days.

Usually I would call my hepatologist, tell him all this, and he would have me right in for an ERCP and stent swap-out right away; but we're dealing with some logistical issues this time. My five-week cycle of chemo/radiation is due to start around the end of January, and I have to have a new stent before then. Then, it can't be changed out during that cycle, if at all possible (we don't want to mess with the bile duct where the radiation is being aimed--need to control as many variables as possible). So in order to find a balance between changing out this stent (I usually have them changed every eight weeks), and putting in the next one so it's in for an appropriate length of time, we had to push back the ERCP that was supposed to be four days ago, to January 6th. There are known risks with the ERCP procedure and inserting and removing stents, so to do a change now because I need it, and then another in three weeks, doesn't make much sense unless it's on an emergent basis.

I feel, based on the blues and the itchies, that this stent is no longer doing it's job like it should; but there nothing I can do but wait until the next ERCP for some relief. This waiting seems interminable right now. Waiting for EVERYTHING. Waiting for my next chemo session (I'm on my 13 day break in between cycles right now, don't have another treatment until the 23rd); waiting for the ERCP; waiting for the radiation simulation procedure; waiting for the five-week cycle; waiting for the laparotomy; and the worst waiting of all, waiting for the transplant. I am in waiting limbo right now. Can't move on with anything in my life because all of this is ahead of me, and don't have enough energy to enjoy where I am right now. It sucks.

So, maybe I am saying 'woe-is-me' today afterall.

The Itchies.

2008-12-14T02:41:00.000-06:00

Well, I completely over-did it on Thursday, trying to get all my final grading done for the semester (which I did, I'm free!) in addition to doing a couple of loads of laundry and cleaning up the kitchen. I should have just been SLEEPING. So yesterday I slept and slept and slept some more and did my best to stay hydrated while feeling pukey. Again today I just could NOT keep my eyes open. My fatigue was so bad I was falling alseep and slurring my words together as I read Danica a book. So it was back to bed several times for me today.

Until now, 2:45 a.m. A two-year-old came downstairs and crawled in our bed (she knew to go to Daddy's side if she wanted to stay), and I woke up no longer feeling the desperate need to sleep. So here I am, about half awake and wondering what to do next--besides scratch my itchites out, because those are driving me crazy tonight.

Chemo was today.

2008-12-10T23:02:00.000-06:00

Chemo was today, as was an appointment with my oncologist. We were supposed to be there at 10:30 for labwork, so I figured we would drop Danica off at the Science Center with Annie at 9:45, so we would need to leave the house at 6:45. So I set my alarm for 5:15 to get some things done before we left and woke up at promptly.... 7:19 a.m. Crap. We got our act together and got outta the house by 8 and I called the doctor's office--they weren't phased a bit, thank goodness, said just come on when you can. Good deal.

So it was a productive appointment with the oncologist. I got answers to a lot of questions I'm had for the past couple of weeks, four new scripts (including Ativan 1 mg for NAUSEA.... Who knew??) and something for my stomach cramps that about knocked me out in the car on the way home. Hyosycamine (sp?), whatever the heck that is. New oxycodone minus the Tylenol 325 to top off my pains meds when they aren't working as well as they should be (URQ bile duct pain has been getting steadily worse over the past month) and some new Lomotil. TG for that, the way my GI tract has been with this chemo. Yuck. Like you all REALLY wanted to hear that. :)

Interesting news with my liver numbers, they are wonko again. Poosibly the chemo wrecking havoc on my liver? Dunno. New blood draws in one week, and if my numbers aren't better they will have to 'do something'. Whether that means--examining all the meds I am on or lowering my chemo dose or what I don't know--those were just the words. We'll cross that bridge when we get there.

I wrapped presents tonight, the big ones for my family that were ready for wrapping. Thank you steroids! I'm about to crash hard, though. Time to take my meds and hit the hay. Wanted to let everyone know I'm doing well so far tonight. I have Danica all set to be with friends for the next two days so I can stay in bed and recover for 48 hours. Thank you Stacy and Tiffani and Kelly!

A Great Day!

2008-12-08T22:27:00.000-06:00

Well, today was a good one. I'm still tired as hell, but the nausea was not bad at all today, and I had a day with MINIMAL PAIN--that's a great thing, since my bile ducts seem to be acting up in this last week, especially. When it hurts, it feels like I'm being stabbed in the ribcage; it hurts all the way around my side, through to my back, and up to my neck when it's bad, pulsating pains that just knock me down. But anyway, I only had about two of those today, which is a terrific day!

And we had visitors today! Around noon one of my dear friends came over for a visit and brought two kiddos along with her to occupy Danica (her own and another playmate). Poor Danica, who has been away from home, school, and her friends for five weeks was not too keen on learning to play nicely again... Sigh. She forgot how to share and be a kind friend a few times (but come on, what two-year-old doesn't forget those things sometimes?) and she wasn't very happy that HER toys--that she just came back home to!--were being touched by others. Alas, she made it through the playdate without too much drama, and I had a great time just hanging around on the couch and shooting the breeze after not seeing any of my TN friends for way too long.

They left at Danica's naptime and I had a nice rest, then we had more visitors this evening. Another dear friend and her four kiddos came over, and again we had a great visit--she waited on me while she was here too, which is always nice. :) They stayed until Aaron came home so I wasn't by myself with Danica for very long today. And that's a very helpful thing on Mommy's most tired days, because patience runs thin around here when I can barely get off the couch.

Another friend brought dinner, but I am going to pop it in the oven tomorrow--we finished up some leftovers sent home from Feltsey's house tonight, and will have a nice new dinner with NO WORK on Mom's part tomorrow. Yay!

I ended up the day with a long hot bath and a glass of wine. A humdrum post, I guess, but it's nice to report on the good things sometimes, I think. And it was a good day.

Home!

2008-12-06T18:26:00.000-06:00

We made it home! Aaron is unloading the car, Danica is already parked in front of her computer playing on Fisher Price.com, and here I am, on the couch in front of a fire and a football game (but admittedly don't care much about the latter). Lighting the Christmas smelling candles is about as much as I've done, as per my Mom's instructions to 'REST!'. It was the usual long 4 hour drive, and there was a Very Nice Surprise waiting when we arrived: Aaron, the original Scrooge, had a real tree put up, lights and all, waiting for us. As an extra touch, he even pulled out our beer-drinking, card-playing, pipe-smoking incense-burning man we got at the Dusseldorf Christmas market during our 2004 Germany trip.

This makes him sound kinda soft and mushy, huh? Better not ruin his reputation any further. :)

Full o' Fluids.

2008-12-05T17:27:00.000-06:00

I was wilting and nearly blacking out, so we made an emergency call to Dad and a trip out to pump me full of fluids. Thank goodness we didn't have to go to the ER; Dad made arrangements to get us into the St. John's oncology clinic--we walked right in. Rather, rolled right in, I wasn't in walking shape. So I just got home from getting two litres via IV, and anti-nausea meds. I've been in the bed for nearly two days straight. Needless to say, we haven't made it home yet. Don't know why this round of chemo is making me feel so much rougher than the last, but I don't like it. :(

Crap Warmed Up.

2008-12-04T13:43:00.000-06:00

That's pretty much what I feel like today. Still in bed, and not sure if I am going to be able to muster the strength to pack and get out of here today. We're going to try to go home to TN for a week or so, and I was really looking forward to that--being in my own bed, my own home. Not sure if it's gonna happen today, though, if I don't improve significantly, and pretty soon. Blah.

And by the way...

2008-12-03T22:37:00.001-06:00

I bought fried artichokes this afternoon after chemo at my favorite Italian restaurant on The Hill in StL. Didn't make 'em this time. :)

Easy-Peasy.

2008-12-03T22:22:00.000-06:00

Today was an EASY chemo day, Thank God. First my port was completely numb from that wonderful stuff called Emla cream that I slathered on an hour prior to port accessing (think I'll get some free for praising them publicly??? Ha.). Last time I didn't have a script for the numbing cream yet, and had a compeltely barbaric nurse who thought I was a dart board; it hurt like the dickens when accessing my port, and of course I immediately started crying when she rammed the dang needle into my chest. This time it was barely a pokey little feeling of pressure! Such amazing relief, for something you are DREAD.ING. to go so easily.

Second, I didn't cry even a single tear! Last week I cried at everything. When they started asking my name to verify my meds, I cried. When they asked about my type of cancer, I cried. When they hung the chemo on my IV pole, I cried. They had a volunteer come talk to me about her own experiences with colon cancer, and I cried. They all treated me verrrrry gently and kept saying, 'It's your first time, isn't it hunny?' Um yeah, can you tell? But none of that this time, I went through it like a pro.

And finally, today I learned that I will never, ever again go to the hospital without my computer. I thought I would play on my iPod this time, and read a book; I still couldn't concentrate enough to do those things, I was too nervous and distracted. I needed the mindlessness of Post Secret and Facebook to keep me busy.

I Just Realized...

2008-12-03T10:14:00.000-06:00

...That I was diagnosed with PSC one year ago today. What a helluva year.

I am awake.

2008-12-03T08:51:00.001-06:00

Somebody take my temperature. Me, awake before Danica, voluntarily? Me, awake at 8:30 a.m. and NOT able to go back to sleep?? Anyone who knows me and my preferred vampire-like sleeping and waking schedule will understand when I say the aliens must have replaced my hypothalamus overnight. At least I got a respectable number of hours in last night, as compared to the insomniac craziness of the night before.

It's chemo day. No wonder I can't sleep. I've already popped my first round of keep-me-calm-and-sane meds since the appointment isn't until 3:30. And after the steroids they give me (for nausea, they say) as pre-meds before the chemo, I won't sleep well for two more days. In fact, I may do something crazy again this afternoon after chemo like I did last week, on steroids: I got it in my head that I NEEDED to make deep-fried artichokes, went to the store and got all the ingredients, and made them with a lemon aioli. YUM! That was the most activitiy I had completed in over a week. Gotta be the steroids.

I heard a little voice calling for her Feltsey (my Mom, who thinks she is too young to be called Grandma :) ) to come get her out of bed. Time to start this nerve-wracking day. I think we'll go to the bookstore to kill some time this morning, since we're up early enough--there's a book I've been wanting to read called 'Crazy Sexy Cancer':
http://www.amazon.com/Crazy-Sexy-Cancer-Tips/dp/1599212315/ref=pd_cp_d_1_img?pf_rd_p=413864101&pf_rd_s=center-41&pf_rd_t=201&pf_rd_i=B000YV1KVI&pf_rd_m=ATVPDKIKX0DER&pf_rd_r=0EDEWKTD5406J3CTTTV1 I shall update when we get home.

Shattered.

2008-12-02T14:40:00.000-06:00

I am shattered. This is what I feel like these days--especially since the chemo started--if I try to have a 'normal' day.

Here's what today consisted of so far: first, I got Danica out of bed, changed her, and got her busy with some toys while I showered and dressed for the day. Now this seems like a normal activity for most of you; for me, it uses up precious energy. Then we went out to get my bloodwork done before tomorrow's chemo treatment. My white count is a little low, but that's to be expected--not low enough yet to cancel chemo or push it back, but this will be a cumulative effect, I've been told, the more treatments I get. So we're good to go for tomorrow. Anyway, next we went to my Dad's office to get a copy of the blood work to carry with me tomorrow in case there are any mix-ups (nice to have immediate results! Perk of being a doctor's kid.). Then on to eat at our favorite Japanese place in town for lunch--yes, Danica my strange and wonderful child, loves miso soup, tofu katsu, california rolls, and gyoza. But she won't eat chicken nuggets. Whatever, kiddo. Then, on to get her hair trimmed. Then to the post office. Now we are home.

That seems like a regular day to most folks, right? Well, I'm now back in bed because I don't have the energy to go back upstairs and work on the quilt I'm making to keep my hands busy, or empty the dishwasher for my Mom (we are living with my parents for a while, because it is so much closer to my hospital). I only have the energy to lay around for the rest of the day, hopefully awake. This, my friends, is shattered. Tired to the bones, to the absolute core. More tired than I could have even imagined even three years ago with a brand new baby.

Have you all ever read the Spoon Theory? It's a good one to help you understand folks with chronic illnesses. Have a look:
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

The Beginning.

2008-12-02T01:48:00.000-06:00

I am born.... Wait, that's something else. So, the beginning.

I guess technically the beginning is the ulcerative colitis, diagnosed when I was about 3 or 4 years old--most of you know I lived with that through my childhood, and when I was 18 I had a total colectomy to remove my colon. The cells in the lining of my colon showed high-grade dysplasia; changed towards cancer that, if left alone, would develop into full-blown colon cancer. So the summer after my freshman year of college I had my colon removed, and one month into my sophomore year I had my ileostomy reversed and my newly built insides all hooked back together in hopes that I would function 'normally' again. For the most part I did, and the times when I didn't are rather insignificant at this point.

Because apparently that wasn't enough for one lifetime, I started itching in September, 2007. At first it was like unrelenting poison ivy (in fact my husband Aaron called it 'psychological poison ivy' for quite some time. Funny, dear one.) but it developed into this uncontrollable itch that couldn't be controlled with antihistamines, lotions, etc. etc. An itch to the bone that NEVER went away, and was absolutely maddening. When I was able to sleep I woke up with blood on the sheets from itching in my sleep, and when I couldn't sleep I would lie there with ice packs attached to my hands and feet (the worst spots for the itching) to numb the feeling.

Finally blood work from the dermatologist came back and he said 'it's your liver, and your GI is going to want to see you ASAP.' Nice. GI didn't even want to see me, but started ordering tests right away and sent me straight to a liver specialist a hepatologist (or herpetologist, if you like to be funny like Aaron. :) ) Long story short (too late!), lots of tests later I was diagnosed with primary sclerosing cholangitis.
http://www.mayoclinic.com/health/primary-sclerosing-cholangitis/DS00918 This disease is associated with ulcerative colitis somehow; about 5% or so of UC patients also develop PSC. Lucky me!

My docs did an procedure called an ERCP
http://digestive.niddk.nih.gov/ddiseases/pubs/ercp/ and found a stricture in my bile ducts that required stenting. This stent was supposed to allow my bile ducts to calcify around the stent and stay open for possibly years after the stent was removed, and keep away my symptoms of itching and the unrelenting fatigue I was also experiencing.

Here we are a year later, 8 ERCPs later, and about 6 stents later, and the bile duct is still being a bitch. It has not worked as planned. In my September ERCP and stent placement this year my doctors sent out a test to the Mayo clinics called the FISH test--a genetic test can show cells as they are morphing into cancer. Mine came back abnormal, the beginning stages of a cancer called cholangiocarcinoma--cancer of the bile ducts. There is about a 10-20% chance of folks with PSC getting this cancer. Lucky me! I should play the slots or something.

So I am currently undergoing a very strict treatment protocol for the cancer--developed by docs at the Mayo clinic, and it's now the standard of care for this diagnosis--at Barnes-Jewish hospital in St. Louis, Missouri. I've already undergone a minor laporoscopic surgery to stage the cancer--as we suspected, it's at a stage 0, which means that there are only cell changes at the genetic level so far. Not even a tumor yet! The day before Thanksgiving I began chemotherapy, and so far I have been feeling pretty o.k.--a little bit of nausea and stomach pain, and a lot of fatigue, but otherwise I've been fine. After two three week cycles of this first kind of chemo I get a short break before starting intensive chemo and radiation treatments. I will live at the Barnes-Jewish Hospital Hope Lodge in St. Louis for five weeks during these treatments, since I have to be there every day for the chemo and radiation. After another short break there will be a belly-opening surgery to make sure there is no spread of the cancer, and I will be listed for liver transplant. I will be pretty high on the list and have top priority to get a new liver, so it shouldn't take too long, we hope. During the wait time for my new liver I will be taking an oral chemo drug. After I get my new liver, there will be a long recovery, and then we will put this all behind us in a few years.

We've even gone through an IVF cycle to cryopreserve embryos (the chemo and radiation could make me sterile), so we will have a chance at getting pregnant again when this is all ova (ba-dum-tish!).

So that's where we are. My next chemo is this coming Wednesday, 12/3/08. Hopefully it will be as easy as the first was.

Later, taters.

So Here I Am.

2008-12-02T01:21:00.000-06:00

I have entered the blogosphere, after many promises to friends and family that I will keep in touch about my health. It's tiring to call and email everyone that needs to be contacted to update about what happened with this appointment, and that new doctor, and the other new medicine, especially when I'm feeling unwell. And I want to talk to you all, I really do--it's just hard to do it every time I sneeze, yanno? So from now on I will just be typing it all out, and it's up to YOU guys to check in on me. Deal?? This will not replace all phone conversations, but will serve to make me feel less guilty about not updating everyone equally all the time. I may blog once a week or once a day, I don't have a clue yet. But be reassured that if something important is happening I will leave an update. And sometimes I may just talk to myself, for something to do in the middle of the night.

So here I am, 1:26 a.m., with insomnia again. Not unusual lately, I'm having a lot of anxiety about all of my treatments and that which is yet to come. So I stay up on my laptop eating Smarties and do nothing in particular until my eyes just can't stay open another minute. I usually pair that with a Xanax, which will eventually help me turn off my mind and make me sleepy.

Guess I ought to start from the beginning, huh? Yeah, that's a good place. Ok, new post to follow.