Day +4

Day +4 is a day of morphine. I've graduated from oxycodone to morphine, although I'm not yet so bad off that a pump is required. At this point, if I feel like I need it, I ask for it and they bring it to me. I'm getting IV vitamins (although not the TPI, or bag-o-fat that they give when you've gone for a long time without eating.) I'm also getting IV antibiotics, as I can no longer get the pills down. The doc says that my pain is the result of losing my stomach lining, which brings to mind one of those scenes on "House" where they show all hell breaking loose inside some unsuspecting person's body.

I mentioned yesterday that I am getting comfort from a song called, "Time to Let You Go," by The Funky Lowlives. This song has become my personal transplant anthem, feeding me calm, strength, beauty and hope. I was flabbergasted and completely thrilled to find when I signed on today that the artist who wrote the song, Jon Whitehouse, had commented on my blog with well-wishes!! Further, he wrote this beautiful song 3 years ago upon losing his father to cancer. Isn't that incredible? What gifts we get in this life, and how amazing our human contact. Thank you, Jon, for both your kindness and the gift of this important song. It has carried -- STILL carries -- me through the toughest moments of this transplant.

Day +3

I'm right where I need to be. My counts are dropping now, so I'm on the way down before I get to get back up. I'm in a lot of pain because of the high dose chemo's effect on my GI tract, but there just isn't much to be done about it but give me pain meds and a little Immodium, at this point. They did cultures of 2 samples, and I don't have an infection -- so that's a GREAT thing! Really all they do now is to work to prevent infection, swiftly react to it if it does occur, and just manage the pain which results from the chemo. You just have to let it run its course and remember that it's temporary.

My WBC is down to .3 now, my platelets are 198, and everything else is really dropping, so I'm getting down there. It's important to understand that there is a definite pattern post transplant which does not involve constant improvement. You go down before you go up, so some patience, humility, and faith will hold you in good stead.

In addition to the pain, I'm feeling pretty wobbly on my feet and have this sort of "hollow" feeling, for lack of a better word. It's definitely a feeling of unwellness and fragility. My throat is worsening, as is my mouth, despite extremely responsible mouth care. I'm having trouble swallowing my pills now, so I'm pretty sure I'm going to be on IV antibiotics tomorrow since I'm now struggling to get even the little pills down. As for food, soft foods are ok, as are, obviously, liquids, but even the case of the latter, if there liquid is carbonated, then I have to work harder. According to the new doc on rotation this week, I'm a little ahead of schedule, so I'm really hoping that means that I'll be on the upswing that much sooner instead of just going down faster!

See, what happens with all of this GI/mouth/pain stuff is this: the high dose chemo attacks the rapidly reproducing cells in your body.....like cancer, which is a good thing. Indiscriminately, it also attacks other, good cells.....like hair, skin, nails, and your entire GI tract: from mouth to anus. The whole way down. The pain that I'm experiencing now is just that, and we simply have to just let it run its course and accept it as part and parcel of this process while remembering that its duration will be finite.

I mentioned the importance of walking in my last post. I walked more than a mile's worth of laps in the halls today, some of them hand in hand with Lorraine this afternoon. Talk about your weird dates! When I walked alone for a half-hour this evening, I listened to my new iPod nano (yum!) and enjoyed my "Groove" playlist, a work in progress. First up on that playlist is, "Time to Let You Go," by The Funky Lowlives. That song acted as a soothing angel for me during radiation, coming on the Chill station of my Sirius Radio in my car during several of my trips to and fro radiation. It always came on just when I needed to hear its calming optimism (no words -- you've just got to hear it to get what I'm saying.) Radiation was an emotional time for me, as I was circling the drain on the SCT and feeling more anxiety, so this song now has weight for me. It helps me.

Methinks it's time for some oxycodone now, so I'll close. Till tomorrow!

Day +2

I'm going to start out with a quick cheat and paste an update here that I just wrote up over at the Hodgkins board. I'll try to update later on if there's more to add!

Hellooo! Greetings from Emory!

I've been pretty good about updating my blog but not so much on here. I just wanted to give you the quick and dirty on how I'm doing and where I am in the process.

It's Day +2, so that means that I got my cells back 2 days ago. They say that it usually takes about 12 days for engraftment, and that's why usually folks stay in the hospital for a couple of weeks after Day 0, transplant day.

Everybody's expecting me to have big mucositis problems in my esophagus, and they say that I should start to feel rather, um, "worse" (ok, my word, not theirs -- the didn't sugarcoat it) around Day 4, but it's definitely starting now. As of today I have a big lump in my throat and the insides of my mouth hurt and are tender. I'm doing all the mouth care, yada yada.....they're giving me extra stuff now that it's started.

My WBC is now 1.1, which is nice and low and headed lower -- all part of the plan, which makes me happy! Everything is going as planned and according to tried and true routine, so I'm feeling very comfortable and safe within this SCT routine. I got a potassium bag today, as my levels were too low. (And yes, I do now have a banana sitting right next to me -- and it seems pretty happy to see me if I do say so myself! Yes, I know I'm a freak.) I'm fighting not to chew the insides of my cheeks because they seem to be sort of puffy and well, chewable -- and tearable too, so I'm really working to control myself and not act like an irresponsible 8 year-old and chew them all up. Anyway, it's uncomfortable and a little painful, but I know it's going to get a lot worse, so I will take pains to suck it up and shut my complaining yap for now.

My blood pressure's still really high (170/112 from a deep sleep at 4 a.m., for example) so they're watching it. I'm retaining a lot of fluid so they'll give me more Lassex (sp?) today to help get rid of it and maybe that will help with the pressure, if it's volume-related. I do NOT have any high blood pressure problems in my life, and they know that, so they're chalking it up to the chemo and monitoring it but not really freaking.

Diarrhea remains a constant friend, so I'm gathering samples for them to test to make sure that I don't have any sort of viral infection in my bowels which would cause me to have to be quarantined and forced to wear bright yellow gown to identify me as infected. Now wouldn't THAT be nice! But really they're thinking it's probably still just from a combination of the chemo and my counts dropping.

My fingers have darkened and apparently will darken further from the chemo. Interesting stuff!

I'm tired and a little wobbly as a result of my lowered counts, and that will just increase as they get closer to the bottom. But then they'll go back up and life will be good again!

I'm doing great, I just wanted to share some of the mundane physical minutiae for those who could benefit from the frame of reference.

As I write this, my poor Lorraine is in the sky flying back to me, coming back from her grandmother's funeral. Grandma Romeo had been married to Lorraine's grandfather for 76 years; in fact, they'd just celebrated their wedding anniversary a week or so ago. What a gift, no???? He's in a fog now and quite withdrawn, so we're worried about the obvious. In a way, I find it beautiful that couples go together, but damned if it isn't awful for those remaining. Anyway, Lorraine's going to visit me straight from the airport then go home and pick up our dog (MAN, I love that dog!) and take him home and have some time to herself. That makes me so, SO happy!!! Then I'll have her all to myself again tomorrow. Bliss. (Interestingly enough, that's one of her nicknames for me! )

Love and hugs to all of you!

Day 1

This will be a quickie.

Lorraine was in NY to say goodbye to her grandmother and be with her family, and it absolutely kills me that I couldn't be there for her at this time, when she needs me most. My rational mind tells me that it's unavoidable, but my heart is breaking. I'll be glad when I can hold her tomorrow.

I'm feeling pretty good, all things considered! The only bodily mentionables are an insanely high blood pressure for a couple of days, some fluid retention, and a wicked case of all-day diarrhea. The low-grade nausea and chemo-mouth funk go without saying. But I really do feel quite well! Got in a good bit of walking, but I'm definitely finding myself considerably more breathless than I am typically so it slowed me down a bit. And, as they say, that's O.K.

Today was a very social day for me, what with making a new acquaintance of a fellow SCT'er on the ward (a lovely Latina woman of 70,) visiting a bit with another one who can be a bit trying, and then getting a couple of rounds of guests! Such that popular room is mine! It was wonderful seeing you, Michie and Ginger, and Cheryl. Thank you for all the presents, hugs and love!!!

Special thanks to Ginger for sharing pics and video of Prince Louie -- you know you're giving him back to Lorraine tomorrow, right? Jimmy the Cat can't keep him. Just sayin'. Oh, and thank you again for your perfect mothering of him -- you eased my mind and heart so much, I can't even tell you.

I'm going to sleep well tonight. Yeah, buddy.

Happy Birthday to Me!

Happy Birthday to me!! Sorry this is so late, but I had computer woes and it took me all night to sort them out!

So it's a done deal. Almighty Do-over complete. I got two bags of my stem cells back, both through an IV drip. It took about an hour, hour and 15 minutes. About 15 nurses and techs came in and sang to me (actually 3 different times, as there were a couple of late arrivals who rushed in and made everybody do it all again -- too, too cute!) They put balloons on my door and each signed a little hat for me. Lots of hugs and smiles. As you might already have read, this step in the process is rather anticlimactic. Not a whole lot of physical stuff to report. They gave me a mild sedative beforehand to relax me. I did feel a bit cooler during the infusion, as the cells were returned to my body at a temperature cooler than my own internal one. For a while noone smelled anything of me; now, however, I'm getting feedback that I've got a bit of the garlicky/creamed corn stink caused by the preservatives in which the cells have been stored. Apparently it's not too bad, but there does seem to be a little stank goin' on in here!

Lorraine arrived first thing, the sweetheart, with a big bunch of balloons, cupcakes with the number "0" and the gift of an iPod nano.....AND a bunch of really special framed photos we'd thought lost and hadn't seen in 2 of our 3 homes together! (Lorraine found them when she was looking for a photo of her grandmother with one of her nieces.) Getting those pictures back was the best present ever, I can't even tell you. A pic of me as a little girl sitting on Libby's lap in our garden behind Bierer House (the commune in which I was raised in NYC.) Another of her back during WWII during the time when she was stationed in the Phillipines, her sitting on a bale of hay in a really sexy pose looking like a covergirl. A wonderful photo of Louie just after we'd rescued him at 5 months old -- that a black and white of him barking, and taken by a neighborhood kid who was going on to college on a scholarship for photography. There are more.....what bliss to get them back!!!

A few friends visited with me today, and it was GREAT! I had a great time with them! Suzy and her partner Sandy, and Ginger (taking such loving care of our desperately missed Louie) came bearing gifts and lots of great conversation, laughter and love. Tomorrow I should be able to visit with Ginger again, along with her partner Michie. (Yay!)

After Suzy, Sandy and Ginger left, I saw my oncologist walking towards me with a big box in his hands. He came into my room with a big smile on his face, saying, "This came for you....NOW who loves you?!" He even knew abut Mr. Bear's big adventure, which surprised me. He knew that he'd gone missing, but he didn't know that he'd been returned to me...he was impressed that I'd gotten him back, and I was impressed that he knew about any of it. Anyway, I got a beautiful Vermont Teddy Bear from the lovely Tianna from the HD Message Board! She sent me this sassy, satin bustiere-toting playboy bunny bear with a sweet little button on her right hip that named her, "Sarah." How'd you know, Tianna? Man you're too sweet to me, girl. Thank you from the bottom of my shiny, red girl-heart.

In other news, I found out today that Emory's employees are eligible for benefits from their first day on the job, and that they only have to work 20 hours a week to do so. I found a number of jobs for which I'm qualified -- one of them a perfect match and very interesting to me, but alas the timing's a bit off on that one. It definitely gives me hope, though....and something to revisit when the old bod is up and running once again. I feel like I wouldn't have to be as secretive about my recent health problems in the interview process and that I could voice my passion for Emory in positive (and selling) ways. It's such a large organization, between the university and the hospitals and all of their offshoots, there will continue to be plenty of opportunities. So I'm heartened!

Right now I'm finishing up a bagga antibiotics....no infection for me, brother! I didn't walk the halls today, but I did walk in place in and around my room, doing 2500 steps on the pedometer in about a half an hour. It's really important to walk throughout this process to keep you lungs in order and as strong as possible, among many other reasons. Walking prevents pneumonia BIGTIME, which is the real fear of a transplant patient. There's a whole laundry list of reasons why it's important to walk, but the long and the short of it is that the more you do of it, the better you'll do: you'll resist infection, you'll get out of the hospital quicker, you'll heal faster, and you'll recoup your energy sooner. Tomorrow I'll do more. Today I still felt like I was recovering a bit from the previous days' misery.

I'm very happy to have reached this milestone.

I love Louie!

Ok, just a quick break from all the cancer blah blah blah (see brand new update below) to celebrate my dog, Louie! I miss him so much I can hardly stand it. I love you, Lou Lou! I'm coming home soon!

Day -1, or, On the Eve of My New Birthday!

Hello all ~ this will be a quick one.

I'm ok! I seem to have emerged from my Ativan stupor, and am feeling like something that is almost akin to human. Well, not really, but I do feel better. I'm on several antibiotics now in preparation for my big day tomorrow. I am still having bowel issues and a residual headache as well as significant nausea -- and they're testing my urine for what seems like blood in the hopes that it's not a urinary tract infection but instead one last menstrual hoorah (or whimper, as it were) -- but I'm doing better! Just found out that the bowel stuff will get me another test -- it seems that they are sampling everything coming out of my body. Ack.

Lorraine got word this morning that her grandmother died. It's heartbreaking. They were close, and her grandma had a very significant, ongoing role in her upbringing. So we're very, very sad. Poor Lorraine is flying out immediately after my transplant tomorrow to go to the service, wake and funeral the next day. My poor sweetie.

Enormous thanks from both of us to Ginger for coming to the rescue of our beloved Louie and taking him into her home....and lap....until Lorraine comes home. Send me pictures!!!

Ooooohh!!! And in other news, I might get Mr. Bear back!! When Tallie, the butch capo of my BMT ward, heard about my bear's plight, she got on the phone and send out the search party. A couple of the nurses had done the same, but apparently Tallie knows some of the folks in Emory's laundry place and she was able to get some people actively looking for a small bear of Mr. Bear's description. They have a lost and found, but I guess noone was looking very hard until Tallie got on the case! She told them to give him a little sprucing and get him back to me tomorrow! Poor Mr. Bear, off on such a big adventure all by himself.... I can't wait to get him back. (I should mention that Ann, one of my night nurses, surprised me in the night with a sweet bear in a verrrrry feminine gift bag (just like I like 'em!) Isn't that just so amazingly sweet and generous??? Yay, people. Yay, Mr. Bear!

Days -2 and -3

Hi, this is Lorraine posting for Sarah. Sarah has had a rough couple days due to the Cytoxan. She has had severe nausea and mouth pain for the past 2 days and has been given a great deal of Ativan so she can sleep through it.
Sarah will get her last dose of Cytoxan this evening so hopefully tomorrow won't be so bad for her.
As all of you know Sarah is extremely positive and even during this she is still smiling. Then she falls asleep still with a smile on her face.
As of today the mucositis is not present. The pain in her mouth was caused by the Cyoxan which the are managing with heavy drugs.
Going to the bathroom still remains an issue. Hopefuly that will ease up once the chemo is complete tomorrow.
I hope you are all doing well. I cant tell you how much all of you mean to her and how your comments get her through the day.

Take care and I wish you all NED!!!!

Lorraine

Day -4

Greetings from Day -4! Today was a bit tougher, to be honest....but not as much physically as emotionally. I don't know why exactly; maybe because I learned today that my dear, dear friend, Mr. Bear, is in all likelihood lost to me. It's so crazy I'm so affected by this. Mr. Bear, aptly named because he is a fuzzy tan bear and to me quite male, was given to me by one of my oldest friends Tim (a friend from back in my San Francisco days) when he visited me in Baltimore just before I started treatment when I was first diagnosed. Tim is extremely thoughtful, whip smart, and fiendishly clever. He's also extremely generous, funny as hell, and one of the most gentle people I've ever met -- and that's a lot. ALL of these can be said for Mr. Bear as well, to be perfectly honest, and I'm going to miss him terribly, for he was such a good friend throughout my six months of treatment and literally every low moment since then, through this second diagnosis and up until last night. Last night I was searching and searching for him, pushing my pole around and around my tight room while I looked under chairs and the bed, in both the nurses drawers and mine, in my closet and in my bathroom. As if he had by chance walked in there and gotten locked inside....I don't know what the hell I was thinking. I was just really worried. For good reason, it turns out, because it's clear that he got tossed in with the laundry when the tech changed my sheets yesterday......and they send out the laundry. So he's gone. I'll call back on Monday when Friday's crew will be working again, but the nurse prepared me for his almost certain loss. And that just makes me sad.

But I've just felt rawer for the remainder of the day, with some tears here and there. I'm a little surprised, because I really do feel positively about this process and while I'm a little afraid, I absolutely feel prepared and cared for and not at all alone. Maybe it's just a grief hiccup, brought on by Mr. Bear's loss. Kind of a "Shit, this sucks" moment that will pass.

Anyway, I did want to share that I started the VP-16 today, along with pre-meds, ever-nemesis steroid Decadron, and enormous bags of hydration in preparation for tomorrow's newcomer Cytoxan (carbofosfamide.) Tomorrow, I will get a "cocktail" of Benadryl, Pepsid, Sudafed, and Dilaudid...with more Bendadryl and Dilaudid available if I need either. These are to address sinus issues/pain which can occur. I am happy that I have a very seasoned nurse this weekend; she firmly pushed for these to be placed on my standing order in case they're needed, so there wil be no delay in getting them into me.

Tomorrow will be a big day, chemowise, I'm told. My onc said that if I'm to experience problems with the chemo, they'll arrive with the Cytoxan. Alright, then here's to having no problems!

My counts are still good -- my WBC's over 6,000 so I'm doing just fine so far. Some folks don't become neutropenic until after their transplant, so there's time enough for neutropenia!

Day -5

My fever broke! We're still not sure if I've got an infection or not, but at least the fever seems to have passed. It feels so good not to be sweaty, clammy, and shivery. I have come to the conclusion that I don't much like having a fever.

2 great surprises today! First, I got a ballloon, vase w/silk flowers and bag full of snacks from, of all people, my dentist! I went to her for the first time, prior to my checking in for my SCT, to get verification for my SCT team that I had no mouth problems. Turns out I had a little cavity, so I returned the following day to get a filling and we bonded over weight loss (she needed to lose 5 pounds to get into a bridesmaid's dress in a week.) She was very nice to me....but I never expected this sweet and thoughtful gift!!

The second surprise came shortly afterwards. Lorraine and I were both asleep in my hospital room and who should knock on the door but Bill (dubbyad)from the Hodgkins Message Board! What a sweetheart! Here's the thing: Bill had an SCT 6 months ago on Emory's BMT ward on 7E....and in my very same room! Pretty crazy, given the size of the place! We'd never met before but had communicated a bit online, and since hearing of my transplant he invariably offered use of his home a stone's throw from Emory. I need to have things laundered every day (pajamas, underwear, pillowcases, etc.) and he told us we could do laundry there, watch TV, take a nap....all of the things that a full-time caregiver really needs. He knows how far away from Emory our home is, so he offered up the temporary use of his home (even going so far as to offer us a key!) during this time. Aren't he amazing? Aren't people amazing? There is so much kindness in this world if you remain open to it. So thank you, Bill, thank you from the bottom of my heart for your incredibly generous offer!

In other pleasant news, I've lost 6 pounds so far! (Appetite's retreating as nausea's approaching.) Lorraine and I keep referring to my transplant as my "weight loss program, as in, "Ohhhh, there's chemotherapy? I thought this was just a weight loss program!" Big fun.

Closing Day -6

I'm just about to take my Ambien (to facilitate going to sleep after all the comings and goings throughout the night -- I've been on it since the first night and strongly urge others going through this to utilize this support.)

My fever's still at 101.5, I'm sorry to report. And my blood pressure's also way up, interestingly. They also took another blood culture, as it's their protocol to do another culture after someone's had a fever for 24 hours. My oncologist rethought the antibiotic option, and I took a pill of something or other just after dinner.

I now have more nausea and the headache's worsened a bit as well. Constipation was relieved yet again by diarrhea, but it wasn't quite as, er, dramatic an experience as that of last night. Ahem.

Wouldn't it be lovely if the antibiotic worked its antibiotical magic?

Thank you again for the messages and comments!!!! I know I'm repeating myself, but I so appreciate your support, you guys. :)

More on Day -6

The fever left briefly only to return with a vengeance. Because I'm not neutropenic, my doc isn't going to move forward with antibiotics yet as he doesn't wish me to build up any immunity to them now; later on, when I'll need them the most, I'll receive truckloads of them -- so I'm in a sort of watch and wait on my current fever. They've taken blood and urine samples to see if they can identify anything at play besides fever resulting from the chemo itself (bisulfan can cause it in a few patients) and swelling a delayed reaction to the end of radiation (which ended about 2 1/2 weeks ago.) So there we are.

I feel like crap now. Nausea (not sure if that's from the chemo or fever or both,) a shivery feeling, I feel exhausted, headache, nasty mouth, and it seems like the constipation might be returning since there's been no activity...."But the day is not done," says the optimist! I'm just so hot! (And then cold.) My temp is 101.5 right now so the cause is not a mystery.

I'll probably be back on later.

Thanks to those who've replied for your support! It really helps a LOT, because I feel a bit lonely and bored in here while Lorraine is at work.

Early Day -6

The day has just begun. My fever's still here, so my nurse said that I might get a urine culture and a chest X-ray later today. She said that my onc will talk to me about it when he visits me on rounds this morning and gets to feel the swollen node, etc. I want to be clear that the swollen node is not at all like a cancerous swollen node -- it's sore and tender, and very big and not well-defined or rubbery. For those of us who've had lymphoma, the difference is obvious. It just seems that I have some sort of virus or something. I do want them to get rid of the fever, because I sweat all night and felt feverish.

I'm hooked up to a bag of Zofran now, and this dose seems, so far, to be doing it's job at keeping breakthrough nausea at bay. I feel a general sense of "blech" and my mouth is SO gross, and I have a headache that just won't quit....but overall it could be a LOT worse! So far, so good in my book!

I'll update here later as I know more.

Day -7, adventures later on

Well, I have a fever of 101.4 and I'm NOT neutropenic. They took cultures, which should come back in around 24 hours. A little nervewracking, especially considering a big, painful node popped up on my neck. Seems like a little something is going on. I don't know at what point in this process they give you antibiotics, but I know you get a lot. I'd have thought it was after Day 0, though.

The constipation has passed, replaced with some totally off the hook diarrhea, alas. They gave me this crazy liquid laxative (in my fevered state, I can't recalll the name of it, which I find pretty amazing.) every half hour until there was some activity. Well, I had more activity than I'd ever thought possible outside of a Fleet kit.

And tonight I've had 4 1/2 hours of Nurse Kratchet. Didn't like her much at all -- she was nasty, slow, and forgetful. She's the first one I've disliked in my entire inpatient experience -- SCT and ICE. I'm going to see tomorrow if I can request that she not care for me in the future. On the upside, she just had a short shift to fill in for someone, so what's 4 1/2 hours of my life? I got my chemo, didn't I? That's what I came for.

More tomorrow.

Day -7

One down! The Busulfan makes me feel yucky, but no breakthrough nausea as yet. I have the regular chemo "yuck" plus a sort of scummy tongue (despite multiple brushings and rinsings) and a very low-grade headache. They've got me on a rather considerable dose of Zofran, as the Compazine they'd like to have given me to supplement a normal dose of Zofran is incompatible with my Wellbutrin. Who knew? So I've got the inevitable Zofran constipation. Bleh. We're now on a "bowel regimen" *shiver* so I should see some relief fairly soon. I'm walking my laps and drinking my water and doing my rinses and brushing my teeth. Everyone seems to be very pleased with the white Christmas lights Lorraine hung for me...they do seem to add a festive air, or relaxing, or pretty, or something. I'm glad I brought them, because they make me and everyone else smile.

Last night they woke me literally every hour for blood draws (6!), vital checks, weigh-ins or bag changes. (The scale they roll in makes me feel like a competitor on The Biggest Loser! As I step on, I swear I hear that heavy "big person" bass drum sound they play whenever they put the big guys on that thing.) I took an Ambien as the activity was ramping up for some support getting back to sleep again after each of the disturbances, but still I'm pretty tired today. After my doc and his entourage made their rounds in the morning, and my room was cleaned, I tried to catch some shut-eye before lunch. Nope! More visits from the social worker and the platelet study coordinator. Alrighty then! After lunch I walked a mile, marking each lap on the big dry erase board they've got out in the hall, and once I get hooked up to another bag of Busulfan I'll try again to sleep.

I'll be back later tonight to post more -- just wanted to give another update while I could.

Day -8, or, The Way Out is Through

Alright, I'm in! (I checked in at 11:00 a.m.) I should be starting my Busulfan in a couple of hours; I'll be on this stuff for 4 days straight.

Here's how the day counting thing works: The day I get my stem cells back is Day 0 -- also to be known as a new birthday for me, because I'll be completely replacing my immune system in a sort of dramatic medical "do-over." All the days leading up to it are in the negative, and will be counted down until I get to Day 0, at which point we'll start counting up through 100, as this is the period during which I will be at the most risk.

Here's the schedge:

o Day -8, Tuesday: Busulfan (24 hours)
o Day -7, Wednesday: Busulfan (24 hours)
o Day -6, Thursday: Busulfan (24 hours)
o Day -5, Friday: Busulfan (24 hours)
o Day -4, Saturday: Etoposide/VP16 (4 hours) and continuous hydration
o Day -3, Sunday: Etoposide/VP16 (4 hours); Cyclofosfamide/Cytoxan (1 hour) and continuous Mesna
o Day -2, Monday: Etoposide/VP16 (4 hours); Cyclofosfamide/Cytoxan (1 hour) and continuous Mesna
o Day -1, Tuesday: Mesna and hydration to run until 24 hours have passed since last Cyclofosfamide/Cytoxan treatment, then stop all drips. (Hallelujah!)
o Day 0, Wednesday: Happy birthday to me! Hello, 7,800,000 stem cells!!

It seems that I probably won't be getting the Kepivance at all now due to its role in pretty much closing up my esophagus -- it wouldn't do that to the normal person, but mine is the size of a 9-year old's to begin with, before all the scar tissue accumulates, as it always does between dilitations. My doc said that, while it works well to reduce the severity and duration of the mucusitis, it has a cumulative effect and acts in "layers" with multiple doses, so he's concerned about giving it to me again since it had such an effect on me the first time. For this reason, he said, he thought it better not to have it after my transplant, as was originally planned. My response was that the days after my transplant are the days when most folks stop eating anyway, so it doesn't much matter if I can swallow or not! We left it that he would mull it over and whatever he decides is fine by me.

I'm going to participate in another study! I'm really happy to be able to contribute in this way, and urge any others who are given an opportunity to do this to allow their medical experience to benefit patients in the future. You may recall that I participated in an AMD3100 study. This second study is oriented around platelets in a "Determination of the optimal platelet dose strategy to prevent bleeding in thrombocytopenic patients (PLADO study)" sponsored by the National Heart, Lung and Blood Institute, a division of the National Institutes of Health (NIH). It's a randomized study in which we participants will get one of three doses of platelets when our platelets fall below 10,000, the point at which transfusions are generally required. I will get a low, medium or high dose, and if my doc finds that my randomized dosage is inadequate, he will have the option to remove me from the study in order to give me what I need. Getting too many contains no health risk. So it's pretty much risk free, and I get to give them some important information! What they're trying to find out is exactly how many platelets per kilogram of body weight are most effective. Apparently they've always just hung a bag of blood without knowing how many platelets were contained within it and without any specific idea of how many would be most beneficial for the patient. This study will tell them how many platelets we really need when our counts are low, so folks won't get underdosed in the future. The study's findings may benefit the medical community in other ways unknown to me. So that's that. Glad to contribute!

I've been told by my doctor that the 7-10 days after transplant are the worst, and that once my counts start to recover, I'll feel better. He said that some folks have a really hard time with the chemo, and others don't, so we'll see how I do. Among those who suffer more, the effects are most acute after day 4 of the 7 total.

Lorraine just left; she'll be back early in the morning and then again late tomorrow afternoon. We have a movie date with our DVD player! Jeez, how did we live before Netflix, anyway?

In a book I'm reading, the protagonist refers to a saying: "The way out is through." Just what I needed to hear as I stand at the edge of it all.

The trees above show the two varieties of Japanese Maple that Lorraine and I got to commemorate my SCT. They will grow strong along with me.

A Trip to ER and Getting Readmitted this Tuesday

Friday at around 10:30 after eating a couple of chicken wings, I got a piece of chicken well and truly stuck in my esophagus. Try as I could, I couldn't get it to go down or come up. It was still stuck when I met with my oncologist to get the green light on going back in this Tuesday to start high dose. Dr. Kaufman said that the Kepivance I took last Saturday-Monday in preparation for the scheduled high dose chemo as a proactive means of reducing the severity of the mucositis most SCT patients -- and, I'm told, definitely I, as a result of my esophageal strictures -- will get, caused my esophagus to swell and exacerbated my already severe problem swallowing.

So, after giving me the "all systems go" for going back in this Tuesday, Dr. Kaufman tried to expedite my getting an endoscopy to remove it in Emory's ER. He really did try, calling ahead and even walking over to muscle up some extra speed, but I still ended up spending 7 1/2 hours there for a 40-minute procedure. The GI doc had a really hard time getting it up because it was big enough to just completely block one of my strictures, and it ended up being pretty traumatic, painful and scary. I felt like I couldn't breathe, like I was drowning....it was pretty awful.

Lorraine and I had two of our favorite friends, a couple named Bob and Rick, come from Baltimore to spend the weekend with us. After picking them up at the airport at 5:00, Lorraine brought them straight to the ER, where the three of them waited for me until just after 12:30 a.m.

The good news is that I'm swallowing much better now that the swelling has gone down, and I'm very happy to know that day after tomorrow I'll start high dose. I'm not exactly looking forward to it, but I am absolutely ready to get in there and get it over with.

As Lorraine likes to say, "Git 'er done."

The Pressure's On!

As of today, the new plan is this: Tomorrow afternoon I'll get eyed by my onc. Provided I pass muster and get the go-ahead to proceed next week, I'll go back to Emory daily Saturday through Monday for another round of the Kepivance (ick), take another day's worth of Dilantin on Monday, and then go back in on Tuesday at 11:00.

I do think I have had a little bug, so I've been slamming the fluids and vitamin C, and getting lots and lots of rest. I have to believe that I'll get the green light tomorrow.

Prayers and good vibes welcome! We have some dear friends, Rick and Bob, coming to stay with us tomorrow through Sunday, but I'll make a point of giving an update tomorrow night.

Inspiration

"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, "I have lived through this horror. I can take the next thing that comes along." . . . You must do the thing you think you cannot do."
Eleanor Roosevelt

Did I mention that I have a photograph of her visiting the troops and Red Cross workers in World War II? Libby, one of the amazing women who raised me, was a Red Cross worker overseas during the war, and she was standing on the sidelines with a camera when Predident Teddy Roosevelt's wife visited the troops to cheer and motivate them. I love that Libby was able to see Eleanor; I like to think that they were very alike in many ways. I find both of these women absolutely inspirational, and I am finding this quote of Eleanor's particularly relevant in light of today's setback.

I give thanks for both of these extraordinary women.

They sent me home.

I'll post more details soon, but after getting my PICC line placed with great difficulty and 4 almost fully realized attempts (repeated "spasms" were the problem -- my veins would just disappear) I went up to my hospital room in the bone marrow transplant ward to find that Lorraine had gotten me beautifully settled in...even hanging the white Christmas lights I insisted on bringing.

The long and the short of it is that the flu-like symptoms I've experienced over the last few days could result from allergies during my first fall in the allergy capital of America....or I could actually have some sort of bug. My breathing is fine, I'm not achy any longer, no temp, but I do have a tickle in my throat. So in the name of my safety, they sent me home. If I have a bug now, after chemo I might not be able to recover, or it would take me much, much longer. So I appreciate it. That said, I'm just completely devastated and have cried my eyes out. They have no idea when they'll be able to get me back in again. Apparently it's the busy season for bone marrow transplants at Emory. Obviously they want to do it as soon as possible, and obviously I'm praying that it will be in a week....but there are no guarantees. Going longer without treatment to cure me is terrifying and absolutely awful to contemplate.

I do understand it, but that doesn't make it any easier to take. I can't seem to stop crying whenever I think about it.

My transplant coordinator nurse is supposed to call me tomorrow, and then I'm supposed to go back in in a couple of days to get checked out. Then we'll talk about getting me back in there. They have no idea what they're going to do about the Kepivance I took and whether I'll be able to take it for another 3 days before getting the high dose chemo -- I forgot to ask about the Dilantin.

This is out of our control, and it may not be a long delay. I'm hoping that these truths give me a greater sense of peace tomorrow.

One funny thing: Lorraine made me laugh mid-sob when she said, "I've been kicked out of bars, but never a hospital!" She's pretty great, isn't she? She's as upset as I am, and has said about 47 times so far since we heard I was going home, "I can't f*ing believe it." We both have some emotional reconciling to do. This is all so hard. Until you're in it, you really just can't fully understand how hard it is on so many levels. If you were to ask Lorraine how it is, she'd probably say, "It's awful. It's just some seriously f*cked up shit." And that pretty much sums it up, I'd say. It kills me that I'm putting her through this.

My PICC line is hurting a lot as a result of all the problems the physican had (it was the Attending Physician, so I was in the most experienced hands there.) I smell Oxycodone in my near future, as what they gave me in the hospital has worn off.

I'll be back with more soon. Hey, how do you like the new digs?

The last of that calm before the storm

Just a quick post to say before I turn in that I'm ready for tomorrow. I'm sick with some sort of bug, and I did get a fever of 100 degrees, but I'm not sure that's a disqualifying event. They knew I was sick today but I hadn't yet had any fever. I'll go in tomorrow as planned, and they can see then how I'm doing and whether my schedule needs to be modified. I doubt it, as my fever didn't go over 101, which I think is the magic number. I'm achy, my throat is sore, I've got a headache, I'm dead on my feet....seems pretty much like the flu to me. They'll take care of me, I'm sure. I just want to get in there and get started.

I'll update again tomorrow.

11 down, 1 to go!

Thank you, Maureen, for the gentle reminder that some of you seek more regular updates on my experience.

Today I had my 11th of 12 radiation treatments. I'm getting the newest in radiation technology, Intensity Modulated Radiation Therapy, or IMRT.

Intensity Modulated Radiation Therapy (IMRT) is a new form of highly precise radiation therapy that targets cancer cells with high doses of radiation while minimizing the exposure to nearby healthy tissue. The advanced technology is in use for a variety of sites including head and neck tumors as well as for treating prostate, cervical and endometrial cancers.

Now as we are able to distinguish normal tissues from cancer cells with ever increasing precision, more exact treatment planning is possible. This is a intensive process that is optimized by use of powerful diagnostic imaging systems. The process involves capturing data from computerized tomography (CT), magnetic resonance imaging (MRI) and positron emission tomography (PET) diagnostic scans and digitizing the area of interest into a sophisticated three-dimensional treatment planning system to develop a precise attack on cancerous cells. Using a linear accelerator equipped with IMRT technology, radiation oncologists can set safe limits of radiation doses to be received by normal adjacent tissue while delivering escalated higher doses to cancerous tissues.

The benefits of IMRT are many. Higher radiation doses are achieved with IMRT technology which produces better outcomes and fewer side effects than most conventional plans. IMRT delivers a uniform dose to the target while simultaneously limiting dose to nearby critical structures. In some cases, the daily dose can be increased; thus, decreasing the total numbers of treatments. These features translate into improved cure rates for many patients with less toxicity.

I'm very fortunate to be able to have access to this technology, and at a location just 15 minutes from my home. Before every treatment, I get an X-ray, so each treatment is responsive to the ongoing changes in my relapse site's size, shape and density. Because the radiation is delivered with such specificity and accuracy, I'm able to receive the lowest dosage required, and only to the areas requiring it. Isn't that beautiful? I never wanted radiation because of the associated risk for organ damage and the development of secondary tumors down the road.....but it's been effectively proven to have enormous benefit to the SCT process, so I don't really have any choice. I just know that if I have to have it, I'm very grateful to be able to have access to the most gently effective treatment available at present.

My primary side effect is fatigue. My overall energy level is markedly reduced, I need a nap in the afternoon (but don't always take it -- I don't want to spend my last days of freedom in bed!) and I tire very easily when I do exert myself. Skin issues are minimal, because I've been very, very good about applying my cream 2-3 times a day (almost always 3, I'm happy to say.) My skin has darkened a bit in the area getting radiation, and it's very warm to the touch, as if I had a sunburn. I've also noticed that my internal thermometer is completely out of whack -- lots of hot flashes, usually followed by cold flashes. It's last year's chemo-induced menopause all over again. I'm not sure I'm in menopause yet, because I did get my period last month -- after 2 cycles of ICE that's no small feat! Behold the power of my ovaries!! I'm sure my upcoming high dose regimen will effectively drive the last nail in my pre-menopause coffin, although there have been cases in which the high-dose induced menopause was not lasting. I'll be fine either way, but given a choice, it would be temporary, know what I mean?

I went to the dentist today the green light to go to transplant without infection. After tomorrow's appointment to address an itty bitty cavity, I'll get it. Onward ho!

In other news, our dear friends Michie and Ginger have so generously offered to take care of our dog, Louie, so Lorraine will be less torn and will be able to spend more time with me in the hospital -- overnight, even! I feel so much better knowing that he'll have love and attention -- even if it will come less from us for the time being. I'm also so very grateful for the reduction in stress that this gift will provide my sweet Lorraine. We love Louie so much and, apart from like 2 nights in a kennel once several years ago, he's never spent a single night alone, even if it meant having an old friend of mine (hi, John!) come to our house to pet-sit for 9 days when we went to St. Maarten. So it's a relief, a huge relief.

Oh, and I guess I haven't mentioned that my mass seems to have dwindled down to almost nothing after radiation. Yep, gotta love that.