Day -2, -1 and BLAST OFF to Day Zero

Day -2 was maybe his hardest day.  He was pretty tired and dreary just going to the hospital. His last day of chemo had a different chemo drug (BCNU?) that was based in alcohol.  All of the nurses were joking about him feeling drunk and tried to explain what the side effects were in terms of being drunk. We had no idea what they were talking about.  His face did get pretty flushed and he felt pretty awful by the time we crawled out of there.

Being home always seems to cheer Chris up. He gets comfortable in the reclining chair and I bring him whatever sounds good. For most of day -2 and -1 all that sounded good was some of the magic mineral broth that Dixie cooked up from the Cancer Fighting Kitchen book.  Broth and crackers, that's about it. Sometimes some popcorn, apple sauce, toast or Sprite.  Chris has lost more than 5 lbs since we got here and around 10 lbs from when they gave him all the fluid at the beginning of the week.

Day Zero - Today was our best morning...we didn't have to show up at the stem cell clinic in the hospital until 11:00! It was the best morning - food wise - for Chris too. He felt up to eating a bowl of mush and some toast. Although he still feels really tired, like a truck hit him.

They hooked him up to fluids, checked his labs, got him set up with an EKG machine to monitor his stats and after an hour and a half his stem cells were brought outside his curtain ... he was ready for the infusion.  His nurses were wearing a "Day Zero" tshirt and kept talking about today being his second birthday and everything. They warned him about possibly getting violently sick, having a constant tickle at the back of his throat like he needed to cough the whole time, getting stomach cramps, experiencing a 'brain freeze' type sensation in his chest, and feeling flushed.  All of those are possible side effects to the stem cell infusion.  Last week, Chris had such a good collection, they got 6 bags of stem cells frozen...thats over 4 million stem cells per kilogram of his weight...at least as far as we understand all that.

The process goes like this.

First they give Chris some dum dums to suck on to avoid actually tasting the bad taste that comes from the preservative they use to freeze the cells. Then a technician pulls out a frozen bag of stem cells and together with Chris' nurse, checks it against his wrist band to verify that they are indeed Chris' cells.  Its so cold its smoking.  She has to wear special gloves because the temperature of the portable freezer they keep the frozen bags in is colder than -180 C. CRAZY COLD.

Then the technician puts the bag in body temperature water and massages it until it becomes more of a slushy consistency.

Then she hands the bag to another technician who empties the bag into 2 big syringes and uses a smaller syringe to flush out anything remaining and extracts those remains into the small syringe.

One nurse holds / warms up the syringes while the other nurse takes one at a time and pushes it into one of Chris' lines.

And repeat. 6 times for the 6 bags.

Finally done.

Chris did great. He only experienced a little cold feeling where the slushy cells entered his body and his face looked flushed by the time we got to bag 4 or so. He felt pretty wiped and thanks to the relaxant and nausea drug Adavan (sp?) He was feeling pretty calm and slept for another couple of hours while his fluids finished.  Then we came home and had some dinner watched some TV, did some laundry and now he's playing Xbox while I write this up. I think he's earned it. :)

Day -3

Chris, although not feeling too terrible, is starting to wear down from feeling off. He can't decide if he's starving or nauseous... but probably he's both. At least the double dose of Lasics (sp?) helped draw out a lot of the fluids. He was carrying about 5 lbs of extra fluids. But now he has to take potassium pills since the lasics messes with his potassium levels. His body is just messed up. I guess the poison is working. He's feeling less inclined for conversation and has been trying to sleep for most of the morning. Its hard to really actually fall asleep when interruptions occur every 20 min or so; either machines beeping or nurses coming in or needing to go to the bathroom or hearing your noisy wife shift something.

But today is the last long day of Chemo. Tomorrow is supposed to be shorter.

Last night we went for a walk before crashing on the couch to eat dinner. It was a pretty and soothing sunset. Is that weird for a sunset to be soothing? We are both really love the beauty and weather of Nashville.

Day -4

We didn't sleep super well last night. Chris was up going to the bathroom and just tossing and turning. I woke up a lot too, had a vivid scary dream and ended up going to the reclining chair in the family room at 4 because my hips were aching pretty bad.

But thanks to some time in the bathroom Chris said he was feeling pretty good this morning, just tired already and warned that he might want to sleep more today. 

We get to the clinic and find they've assigned us the big room with a glass door and a bed! Some of the nurses have noticed that Chris has been trying to work still... He's got 8 papers to review by next Saturday for AMOS... And it can get pretty noisy in the hall with so many fun and outgoing nurses. Also dear Gwendolyn noticed how much Chris likes to sleep through this all. So for today we have a quiet room with a bed! Chris asked about a more comfortable chair for me and they straight up wheel me in a chemo reclining chair of my own(!) apologizing all the while that they didn't think of it sooner.  (I'm going to have to try real hard not to feel disappointed the next time we get assigned a normal room).

Our assigned Nurse Practitioner Esta came and talked more about what we can expect in the next week and drew a picture for us and everything. She actually answered a lot of questions we came up with yesterday but hadn't asked yet. She's great.  All the staff here are friendly and nice. We feel well taken care of. 

Answers to prayers, today is starting off great! After today we'll have 3 chemo days down and 2 more to go. Then all the real fun begins with the side effects coming on full blown and his counts plummeting. 

Days -6 and -5

All the nurses and doctors refer to days in a stem cell transplant by revolving around the day patients get the clean stem cells back, referred to as 'infusion' and also as 'day zero.'  So since Chris is scheduled to be infused with his stem cells next Monday, that makes yesterday 'day -6' and today 'day -5.'

Day -6 was the first day Chris got the crazy intense chemo. It took allllll day. We show up at the clinic at 7:30am and get a little room/glorified cubicle with 3 walls and a curtain.  There's a nice reclining chair for Chris, his IV machine, the nurse' ns computer, a hospital bed table, a little chair for me and a TV with a DVD player mounted in the corner.

Protocol goes like this:  Nurse checks Chris' trifusion catheter and flushes each line... (Everyone has to wear masks for that part)...then comes the pre chemo drugs - Zofran (twice a day) and Emend (sp?) both of those are for nausea and are given through IV; and two pills of Decadron (steroid).  Then some fluids - two HUGE bags of saline. Then the first chemo drug, Etopaside - which is over an hour, then some Mesna (a side drug that goes with the next chemo drug), then the next chemo drug, a high dose of Cytoxcin - a 2 hour infusion, then more Mesna, and then more fluids. Oh and somewhere in there he gets another drug that is supposed to help draw out all the fluids he's getting...lasics... I think. Oh and some colace.  He has to record and measure everything he drinks and voids to match up his intake and output, even at home and during the night. At some point we get visited by the Nurse Practitioner, and the Doctor, and on the first day we also got a visit from the pharmacist and dietitian. (BTW, I know I've horribly misspelled all the drugs).

Chris and I both were in good spirits in the morning, the nursing staff are all super nice and at times even raucous.  It seems like people enjoy working here and working with each other, in general. Its a nice feel. The patients range from happy, joking with the nurses and smiley to quietly polite and even some just quiet....almost ghost like - shuffling to and fro in their masks and sweatpants.

But by lunch time Chris was feeling super bloated from all the fluids and so tired, almost sick-to-his-stomach tired. He sort of checked out from the world and tried to curl up in his reclining chair, dimmed the lights and pretended to sleep. I didn't expect it to hit him quite so quickly and I was tired and uncomfortable. I found my emotions matched his.  By the end of all of this its about 4:00pm and by the time we get out the door its closer to 5.

After a quick stop to the grocery store we finally came home just before 6 and it was all I could do to heat up the frozen dinners, eat, make sure Chris ate, then we both fell asleep in front of the TV around 7:00. Luckily Chris woke up at 9:30 so we could close up shop properly and sleep in the huge king sized bed.

Unlike the previous night we both slept great. I added another pillow to my sleeping set up, right behind my back and my hips are thanking me.  But at 6:20 my alarm rings and its off to the races again. Same long routine (minus one nausea drug that only happens again on day -3).  Our nurse, Gwendolyn (love the name!) comments on our improved looks (apparently we both left here yesterday looking grey, tired, and for Chris - nauseated too). Our sleep seemed to do the trick and today has not been as gross feeling for Chris as yesterday was. We had a game plan to walk around a bit and try to eat many small meals to keep up his energy but... It didn't really happen. Most of the afternoon he looked like this:

Oh! Our friend Gwendolyn just walked in and told us we can go as soon as Chris gives her a urine sample. So I'm going to post this. 

A week apart

Last Sunday, Brittany and I said goodbye to Chris and his mom and drove the kids back down to Mississippi. I have been fairly weepy recently and so of course, started crying as we parted ways in the church parking lot after a Sacrament Meeting in Nashville. To be honest, I was not looking forward to this week, despite having such excellent company in my sister-in-law and her adorable baby girl.  I knew it was going to be tough, long and tiring. And so it was. I cried a lot...about small things and big things...and for some reason the kids chose that week to be particularly contrary.  But we also had fun moments playing with Jane darling, chatting it up with Brittany, and feeling the joy of having two women in the home to get double the stuff done. 

The kids LOOOOOOVED to hold Jane and play with her. It made me so excited to think of them being equally fascinated and helpful with their own baby brother coming soon.  They were all really great with her but Alec in particular impressed me with his loving attention. 

Brittany helped me stay sane, mostly positive, and organized...writing down lists and keeping track of all the things I needed to do to get ready to send the kids to UT for 3 weeks, close up the house there in MS and get stuff packed for my stay with Chris in Nashville.  She helped me go through the kids clothes and then helped me shop for the things they needed. She found/sorted/folded/organized all my baby clothes so I can have the little boy sizes ready for the baby when he comes. She killed bugs, did dishes and laundry, made meals, read stories, babysat, and provided good company, conversation, advice and a shoulder to cry on. Literally. One time I was in my room upstairs putting away clothes and THE BIGGEST WASP I EVER SAW slowly crawled across the floor a few feet from my feet. (BTW... I very much am afraid of bees and wasps etc). I can't remember if this was just after or before we found a HUGE cockroach climbing up out of the kitchen sink drain.  Whatever, it doesn't matter. Anyway, I was also on the phone with Chris when I saw the wasp and I stood paralyzed for a moment not sure if I should try and smash it with a shoe, or cover it with a cup.  I ended up deciding on smashing it but missed my first try and screaming scared, just wildly pounded away at the floor until I got him. I hung up on Chris and just started sobbing and shaking uncontrollably. Brittany walked in, rubbed my back and told me it was going to be ok.  I wasn't even sure why I was crying, it wasn't that big of a deal. I don't like bugs in my house and they come in this house ALLLLLLLLLL the time. 

Anyway. Point is, we survived. Friday came and we were so on top of things the car was packed and the house was cleaned by 8:30 am. I had a doctors appointment (another embarrassing moment of crying in front of doctors, nurses and strangers as my doctor got called away to surgery without having seen me after I'd been waiting for over an hour) and we were finally on the road by noon. The kids did AMAZING in the car. Like really amazing. Here is a picture I took and sent to Chris at potty and feed-the-baby stop. 

Then we met up with Chris and Dixie in Nashville.  They had picked up some chinese food and we had a fun Friday night movie night watching "Kung Fu Panda" all together.  It was very fun to hear the kids (Charlie and Alec especially) laughing with their whole bodies...like deep belly laughing. I love that. 

Then Chris took his turn putting the kids to bed, helping with jammies and teeth-brushing.  After that we gave them some bracelets that Chris and Dixie had made to help them remember us.  Chris gave them each a father's blessing since they would be leaving in the morning, and then they were off to bed. 

Later that night Chris and Dixie picked up James from the airport.  We had a fun evening chatting and catching up, and then went to bed.  In the morning we got the car packed and said goodbye to James and Dixie and the kids as they headed out on the 2-day drive to Utah.  Then Chris and I took Brittany and Jane to the airport and then we found ourselves suddenly on our own.  We hardly knew what to do with the rest of the day! I hadn't thought that far ahead.  After so many weeks of busy mommy-ing and preparing I had a completely open day, alone with Chris.  We went out to breakfast, came home, had a bath, took a nap, ate lunch, watched football, went shopping, went to dinner and then watched a redbox movie.  Apparently Chris had decided to pamper me as much as he could this weekend. His tender care of me is usually one of my favorite things about being pregnant, but he hasn't really been able to do it much this time. All day yesterday and today he's really focused on taking good care of me. He's so wonderful and I've just been eating up his attention. 

Today we had another relaxing morning, went to church, had a nap, and then went for a walk tonight. I've so enjoyed the last 36 hours with Chris feeling so well and being so attentive.  Almost like a honeymoon or anniversary trip, except that we have chemo coming and I am 7 months pregnant.  But we are sure enjoying it.  This next week is when more hard stuff starts: 5 straight days of super intense chemo, followed by Chris feeling like death and probably needing to be hospitalized at some point.  But like my dad said tonight, we're just chipping away at this whole thing one chunk at a time. 

Chris' blog

Chris' cancer blog is back up! He's planning on updating it often (I even heard the word 'daily' come out of his mouth.)  He has last weekend pretty well summarized on his recent post.

I'll still put stuff on here of course, I tend to add (too many) details and (too much) emotion. 

Here is a picture of Chris as he was in recovery from the tri fusion catheter they put in Halloween morning. 

It was great to be able to start this whole thing as a family, to let the kids get familiar with where Daddy will be living for the next month and a half.  And it was good to live with that craziness (3 rambunctious kids in a convalescing small apartment) for long enough that when we start to miss the kids during the 3 weeks they'll be in UT, we can know that it was the best decision.  :) 

I made Chris put the kids to bed on their last night with him... They are really going to miss him. 

Halloween fun

The kids like to do crafts and its nice to have something specific to do with them or its easy to get distracted with doing all the other stuff I need to do.  So I got one of those packets in the grocery store with little pumpkins and some paint. The kids had fun and so did Chris and I.  

Then, of course, we had to actually carve pumpkins when it got closer to Halloween.  We started one night and got distracted with something else so had to finish the next morning....hence all the beautiful bed hair. We never got pictures and didn't actually finish all of them anyway. 

Our Branch Primary put on a Fall Festival dinner and trunk-or-treat. Alec finally told me 2 days before the festival what he wanted to be for Halloween: A peregrine falcon. I hadn't worried about his costume before since I was thinking he would probably ask for some buy-able superhero or something. I was stumped at first on how to do a falcon costume but found 2 ideas online and kinda mixed them.  It seemed like a simple costume since I would be using fleece and mostly just cut feathers....but....it turned out to be a much longer project. :) Thanks goes to Chris for being a trooper and taking care of the kids/meals for a day so I could sew and bake and decorate the 6 dozen cupcakes I was supposed to bring to the fall festival. 

I found this pirate princess costume for $2 at a second-hand store the day before the party...it was perfect and Gwen was happy...even though she's making a pirate face in this picture. 

Charlie wanted to be Spiderman but since we were supposed to wear masks to the party, Chris demonstrated his mad skills with face paint and helped Charlie complete his costume. 

Inside was a yummy nacho dinner with TONS of awesomely themed snacks/treats, and lots of carnival type games where the kids won some more candy.  They had a blast running around with their new branch friends. 

When Halloween actually came, we found ourselves in Nashville for Chris' stem cell transplant treatment. Chris had had his tri-fusion catheter put in early that morning with only local anesthesia and we thought we could still have a little family party and trick-or-treating later. Turns out Chris was really tired still and just slept most of the day. I like holidays and wanted to still wanted to have fun so I took the kids out while Dixie made some yummy soup to find some neighborhood where we could trick or treat. It was SUPER windy and stormy and eventually found a safe-feeling neighborhood. But we didn't see any kids out and by the second house, we were told that there was tornado warning out and that this particular neighborhood was waiting to trick or treat the next day. Feeling a bit stupid, I made the kids get back in the car and we drove home, but on the next street we saw a few groups of kids out and the wind had died down enough that we parked and did a couple more houses. It was actually a really fun night to be out since the wind and the went roads and dark, fast moving clouds made it seem kinda spooky.  But I was glad to get back to the apartment and finish off the night with the donuts on the string game for the kids. 

Whew! There. I'm caught up on blog posts and now I can put updates on here for Chris' treatment and our experience here in Nashville.