Thursday, November 28, 2013

Surprises on Day 9 / 10

We had snow in Nashville! so fun and I love all the Christmas decorations getting put up.


Yesterday, Day 9, we had a few surprises.

- When we got to the clinic we were assigned a different, smaller room without a bed for chris or a comfy chair for me...in fact there wasn't any chair in there for me. Before we had been there 1 min, one of the nurses that has been looking out for us, Amanda, walked by and said, 'Oh, No. You are not in that room.  She walked up to the desk and switched us over to our 'usual' room then told us, 'You may go to your suite now.'  She is very fun and reminds me of one of my best friends in highschool, Sandra....just with a southern accent. She teases us all the time and keeps us in good spirits.

- Chris' levels went up a bit by themselves and he needed NO blood or platelets!! White blood cells from .2 to .4 and Red blood cells from 24 to 26 and Platelets from 11 to 18.  This was very exciting. We thought this meant that he would just steadily increase from here. Even though he didn't actually FEEL any better, we hoped this meant he would start to feel better soon.  It was like the first gust of a fresh wind in a hot, stale summer month. Hope!

- Since it was the day before Thanksgiving there were some extra nice things for the nurses. A lunch was brought in from some local favorite Mexican restaurant and a masseuse was there to give the nurses 15 min massages. Amanda walked by our room around lunch time and with a glint in her eye asked the other nurse if they could manage to feed a pregnant lady. :) So they made me a plate of some yummy Mexican food for lunch. Poor Chris couldn't have it, but he was kind and kept saying he was glad that at least I could enjoy it.  Amanda walked by a little bit later with another glint in her eye and told me she had a surprise for me. Her and a few other of our favorite nurses had worked it out so the masseuse lady snuck me into the rotation somehow. I had 15 min of relaxing music, warm oils and a shoulder, back, head and face massage. oooooh I melted. My friends told me I looked like I was drunk walking out of that massage room. I'm not sure about that but I do know it felt amazing.  I love my nurse friends. There really is a special feeling in the clinic.


- The last surprise of the day is NOT a good one. Around the time (10:00pm) I was giving Chris the extra dose of IV antibiotics (Vancomycin...a new medication since he had a fever of 100.5 for a couple of minutes the night before) Chris said he felt warm and asked me to take his temperature. It was 101.8. Not good. Another high fever.  Since it went down by it self the night before within just a few minutes, we decided to give it some time and finish the 90 min Vancomycin infusion before calling the after-hours cancer number.  45 min later, it was still high..100.8. So we called and were headed back to the hospital an hour later. We start the admissions process on the 10 floor Stem Cell Transplant inpatient wing  at 12:30am and  it wasn't until 2:30am that Chris and I were finally able to brush our teeth and try and sleep for the night.  The nurse had wanted to get 2 sets of blood cultures started, one from his line/port and one 'peripherally'...which means they had to stick him. This TOTALLY took us by surprise, we thought he'd never have to get stuck again as long as he had the tri-fusion catheter in.  Chris absolutely hates getting poked and I don't blame him since they always have a hard time.  They always (and this time was no exception) end up digging around and then trying in a different spot or two. By the end he was just exhausted from lack of sleep and feeling pretty low about everything.  We were both disappointed to be back in the hospital ...especially since we knew we'd be here for Thanksgiving now.

Monday, November 25, 2013

New Apartment, Day 5, 6 and 7

So on the eve of Day 4 we settled into our original Nashville apartment again.  I unpack everything we took to the hotel and everything the apartment complex people had washed to treat the fleas....which was pretty much everything we brought up from Starkville.

An hour later around 7:00pm I saw my first flea. I was disappointed but also thinking maybe it was just the last stray flea.  Within 90 min, Chris and I had killed 11 more. Every time I walked around the apartment a few more would jump onto my white socks.  NOOOO!!!!! I couldn't take any more of it and txted the apartment people right away.  They ended up moving us into an available apartment in the complex next door that very night.  It is only a 1 bedroom, but thats fine. Neither Chris nor I were up for going to another hotel or other temporary space. He just needs to rest and recover and I can't keep moving things all over the place.

No fleas, my own pillows, the bed topper, and no loud hotel guests made for a good nights sleep. Even waking up at 2:30, 4:30, and 5:15 to administer Chris' IV antibiotics didn't prevent me from going deep into dream land.

The apartment guys were really nice and helpful. They ended up helping to transfer over everything from our old apartment to the new one, most of it while Chris and I were at the clinic the next day, Day 5. We had another busy morning at the clinic (although Chris' levels are scraping the bottom he didn't need anything besides some fluids!) and then unpacking and getting settled again and doing more loads of laundry to kill off any fleas on our stuff.

But our afternoon was nice and low key...lots of football and lots of simple foods - broth/crackers/applesauce/pudding/rice/beans and powerade.

Sunday, Day 6, was even better!! Even though the morning at the clinic wasn't simple, the rest of the day was so nice! His platelet levels were at a 6, normal being 150-300, and anything less than 10 they give a platelet transfusion. It wasn't too long, only 45 min or so and Chris didn't experience any of the possible complications like hives, fever or rash. We got out early enough for a quick stop at the nearest LDS chapel so I could slip in and take the Sacrament. Chris waited for me in the car since he shouldn't be around people yet and I didn't have enough time to drop him off at home. Those 20 minutes of singing hymns and quiet contemplation did wonders for my soul. I pretty much cried through the sacrament hymn and the passing of the sacrament but the peaceful feelings were worth it. Then we went home and topped the day off with some gospel music (even some choral Christmas music!!) hot chocolate, NO FLEAS, rice and chicken dinner, banana n'ice cream and some Masterpiece Mystery. oooooooo...it was such a good day.

Today, Day 7, at the clinic his red blood cell count was low (23...and their transfusion cut off is 25) so Chris got his first blood transfusion today. It was all red and gross-looking for Chris, who doesn't do very well with blood, so he just welcomed the benedryl and checked out.


  I'm surprised he needed some today, though, because his coloring actually looks better! Maybe that means his levels will be up tomorrow. I don't know. His white blood cell count was up... 0.2 instead of 0.1. He still probably has a few more days of being at the bottom but we can start to imagine the incline. :)

His hair has been falling out all over the place, mostly from his beard and its getting in all his food, shirts, pillows, bathroom  but he's not allowed to shave since he's so immuno compromised. He sat down on Sunday and absentmindedly picked at it. I looked over at him a minute later and just busted out laughing.  Half of his mustache was just gone.  He requested a towel for his chest and just went to town rubbing and pulling at his facial hair. It looked pretty patchy when he was down. One nurse even started calling him patchy (which I think is way better than 'the flea people'). Another nurse brought in a hair trimmer and we cleaned him up pretty good. 


The nurses said he looked younger. :)

Hospital Stay part 2

The doctors wanted to keep him in the hospital until he had a normal temperature for over 24 hours so we had at least one more night in the hospital before us.

I thought it best to move the car from the other hospitals slightly more grungy/scary parking garage before it got dark in case I needed to access it. I managed to find it pretty good and had enough energy to go peek at our old apartment. I had gotten a call in the past hour that it was sprayed, cleaned and ready for us to move back into.  I didn't unpack the car from the hotel just walked around, grabbed a fresh tshirt to sleep in and headed back to Chris' hospital room. I decided not to be adventurous and find a closer parking spot....just stuck with what I was comfortable with and enjoy the Christmas decorations lining our familiar walk from the South Parking garage to the hospital.

Turns out I would need to go back to the car TWICE that night. Once around 7, to grab something specific Chris requested for dinner: mashed potatoes and then again around 10:30pm to get some more clothes for Chris.  But...the usual doors I use to enter the hospital are locked after 9:00pm. I knew this would happen and got directions from a hospital worker before I exited the building. Those directions turned out to be wrong. It was dark, raining, late and I found myself walking around the hospital for 45 min looking for the right door - the Emergency Room doors.  You'd think there'd be signs everywhere. There were and I followed the signs but they took me, once again, to the VERTERAN'S hospital emergency room.  The guy there had no idea where the VANDERBILT emergency room was. My feet were wet and tired...just a few hours before I had told Chris I felt like I had ran a 1/2 marathon...my body was so exhausted.

I was talking to my mom on the phone the whole time I walked because it made me feel safer and helped distract me from my tiredness. I eventually found the right doors and was greeted by a mental detector (they always make me nervous for some reason), but the guard was really friendly and nice. Thinking I was home free I was disappointed to realize all the internal doors of the hospital were locked too!  I wandered around looking for something I recognized and some nice guy in scrubs saw me and unlocked an elevator for me one that would take me up to the 10th floor. I stepped out of the elevator and found myself trapped behind another set of locked doors...with no where else to go but back in the elevator which had just closed and was locked from me again. A nurse and another stem cell patient (who I had chatted with earlier that day luckily) saw me and opened the doors for me. It was all I could do to drag myself to the very back corner of the unit where Chris' room was before I just sat down and cried, again.

It was after midnight before I could fold out my little chair and go to sleep. But thanks to the large amount of exercise I got throughout the day and the previous three bad nights of sleep, I pretty much zonked out for the night.

Chris was slowly feeling ok, still had no fever by the next morning (Day 4) and even felt up to eating some eggs and a little waffle!


He got two strange abrasions/bruises on his shin and still had super loose bowels and stomach cramps but no fever so they set us up to be discharged. But first I had to be trained to give Chris some antibiotics through IV. They need me to administer them to him every 8 hours for probably about a week. Whatever it takes to get out of the hospital and back to an apartment.

I don't like any picture of me now that I'm 6 weeks from due date but here is one if me getting trained to do Chris IV antibiotics at home:

Chris getting wheeled out in this awesome cart thing. The kids would've been jealous. Heck, I was jealous. 

Sunday, November 24, 2013

Hospital Stay part 1

We stayed one night in the hotel, the night that switched Chris from Day 1 to Day 2 (in stem cell transplant schedule dialogue).  Pardon my negativity for a moment but I slept horribly. The temperature unit below the window either blasted out heat or cold air... I kept having to switch it back and forth to try and maintain a good temperature. I woke up with my hips and shoulders just aching and before looking at my watch I wished it would read 6:00am....I started crying to find it was only 1:30am. I sat up and looked at facebook/read scriptures for a couple of hours before I laid down again to try and sleep. There was so much noise from neighboring hotel guests and/or people outside, one gentleman was particularly loud and we could almost make out every word he said.  Even Chris commented about it...which is saying a lot since he's been in his own little survival zone, not even living in a flea infested apartment got any complaint from him.  (But he's usually not one to complain much anyway). On our way out the door in the morning we see a couple cigarette butts dropped on the hallway carpet outside the door across from ours. The grab n' go breakfast was mostly coffee and they didn't have any shampoo.

But the hotel was free and I didn't have to find it and it was still close to Vanderbilt and....and....um... two of the pillows felt like they were stuffed with real feathers. Oh! and the chair at the desk was a really comfortable one on wheels.

We went to the clinic, as usual, and his counts were really low. Chris is hanging in there but its all getting to him. He's beyond exhausted, still getting tons of fluid that makes him get up and pee every hour or two, and has stomach cramps. He barely says a word but at some point looks over at me with tears in his eyes and says he's not sure how much longer he can do this. People have told us he starts to feel better between Day 10 and 14....its only Day 2, and that thought depresses him.  I'm tired too and its so HARD being right next to him all the time, seeing what he goes through and not being able to really DO anything to make him feel better. Him and I both shed some tears, and I try hard not to make a scene because my ability to compose myself after I start crying has just disappeared in the past couple of months. Its just better not to start, unless I have guaranteed solitude for a couple of hours.

It was really nice, though, to bring him back to the hotel room and get comfortable laying down in a king-sized bed with more than 1 pillow and a heater blasting next to him. He felt quite chilled from the walk out of the clinic to the car, and car to the hotel room.  I discovered the nice desk chair and got myself set up for some scripture/journal time and some time to work on my quilting blocks. I really enjoyed those two hours and was grateful for the private, quiet, hotel room with a little half kitchen place for me to make rice-a-roni. That quiet time was a nice blessing since things were going to go back downhill very shortly.

Chris woke up from his nap and ate some rice but as I got close I could sense he was hot.  I took his temperature... a couple of times...and tried to keep my voice completely calm as I told him he had a fever that warranted calling the hospital (anything over 100.4 is cause to come in and he was at 101.8). I didn't want him to flip out but I'm glad he didn't let me reason away the temperature by stating the fact that he was under blankets with a sweatshirt on and a heater right next to him. I called the emergency number we were given and within an hour we were headed back to the clinic (thankfully it was just BARELY before they closed at 5) so we could be admitted straight from the clinic and not have to bother with the general or emergency hospital admissions.  They took his temperature and it only read 99.something! But because he looked clammy and pale and because it was so high at home they decided it was better to admit him since it was likely he would just spike a higher fever later in the night so they started the paperwork and ordered some blood and urine cultures.

Good thing they did because just an hour later when we were moved up to the 'penthouse' suites on the top floor of the Critical Care Tower (a special wing for transplant patients with pressurized rooms the size of our California EV apartment!) his temperature was 102.something. They started him on antibiotics and more fluids but other than monitoring him, they couldn't really give him anything to mask or lower the fever since they needed any information his body could tell them about whats going on inside.  He slept feverishly when he could...still having to get up to go the bathroom every few hours, getting meds, taking vitals, etc.  There was a little chair thing that pulled out flat to serve as a bed for me and the kind 'patient care representative' hooked me up with 4 pillows! I actually slept better than I did at the hotel. I think being completely exhausted helped somewhat.

Chris' fever broke in the night and he hasn't had any of the other problems they keep asking him about. No painful mouth sores, no bleeding or pain during urination, no vomiting or diarrhea, no unexplained bleeding or fluid in his lungs.  I had to check us out of the hotel room the next day and after waiting to see the doctors (they came in a pack of 6 at a time :)..)  look at and talk with Chris I barely made it to the hotel with 45 min to shower (still with no shampoo) eat breakfast, pack up all our stuff and check out).

Proud of myself that I made it all and even found a cart to carry the bags down to the car on (so my mom wouldn't scold me for lifting all the bags) I decided to try and park closer to the hospital tower. Long story short (because this post is long enough!!) I somehow parked and got lost in a completely different hospital. A nice lady saw my obviously pregnant self carrying bags of clothes and frozen goods with a lost expression on my face. She informed me that I was in the Veterans hospital (what?? ) and led me out a restricted access door and past some dumpsters. With a sympathetic but cheery attitude, a hug and kiss on the cheek she pointed to wear the Vanderbilt hospital was and sent me on my way. By the time I got up to Chris' 10th floor room, my hands and shoulders were red, swollen, numb and I was once again, on the verge of another crying episode...it was only noon on Day 3.

Tuesday, November 19, 2013

Fleas and gratitude

We have been infested with fleas at our apartment in Nashville. :( At first I thought they were fruit flies when I saw just one or two every other day or so. But they never flew and they didn't look exactly like fruit flies but I'm constantly surprised by the bugs in the South.... maybe Nashville has some tiny, fast and jumpy fruit flies. 

But two days ago I saw too many and looked some stuff up on the internet and figured we had a flea problem. I called the guy who set us up in the apartment the morning of Chris's stem cell infusion and described the problem. He said he'd have pest control over by the next afternoon. So last night we were still at the apartment and the fleas were EVERYWHERE. It was a horrible night. I couldn't sleep... I kept thinking I felt bugs all over me. We thought we should sleep with pants and socks on but the apartment's thermostat was off and I woke up at 2:00 am just itching and sweating. I got up to turn down the heat and then went to the bathroom where I could see at least 10 fleas on each foot!! I saw a few on my pj pants and basically freaked out, took off all my clothes and showered for as long as the water was warm. Needless to say I slept horrible and so did Chris. He hasn't freaked out the way I have, mainly because he just hasn't had the energy too. His levels today were so low he's officially neutopenic. Poor guy. Also the fleas don't seem to like him the way they like me. I think it's because of his smell. The preservative in the frozen stem cell slush apparently has a VERY potent smell I can only describe as a fresh opened can of creamed corn. No joke. It's strong and it's supposed to last for days. I'm glad I'm not in my first trimester. 

Anyway. Neither of us can afford another night like last night so we told the nurses about the fleas and they got our social worker involved and she was very helpful and so has the apartment guy. They worked it out to fumigate the apartment but neither Chris nor I ('cuz of the baby) can be in the apartment for 48 hours. So this morning after settling in Chris in at the hospital/clinic I had to run over and pack an overnight bag and get the apartment ready to be gassed. The hospital is paying for our hotel room and the social worker set it up for us. So after Chris finished at the clinic and got a chest X-ray to make sure no infections are forming we went to the grocery store to stock up another temporary kitchen with foods Chris may hopefully be in mood for later. 

The hotel is not horrible but it's pretty cheap, it actually makes me excited to go back to the other apartment... assuming the fleas are gone.  I wonder if I'll ever stop itching and ever, EVER FEEL COMFORTBALE ENOUGH TO WALK AROUND BARE FOOT IN MY OWN HOUSE!!  After the fleas here and the cockroaches in our Starkville place... I may be scarred for life.


I'm feeling fairly ungrateful right now and I don't like the feeling. I actually have been composing the rest of this blog post for the past few days. But it seems appropriate to publish it now. Maybe remembering all that Chris and I were sincerely grateful for two days ago will help me change my attitude around. 

Ways God has blessed us -

- The nurses. All the nurses have been really nice, helpful, informative, kind, understanding and friendly. One in particular seems to mesh really well with our personalitities. Gwen is not very loud or overly talkative but still open, friendly and kind.  She's cautious and systematic and very proficient at what she does. We feel comfortable in her capable hands.

- The doctors.  Dr. Kassim is so encouraging, positive and even playful at times. Dr. Goodman seems so solid and well grounded with her recommendations.

- This apartment. Its clean and has a nice atmosphere. The location is peaceful, home-like and near a beautiful park. It feels very different from a downtown hospital setting. It has the space we need when other people come, but also seems just right when its just the two of us.

- The city. Nashville is beautiful. We love to drive around and enjoy any new part of Nashville we come across. The hills, and huge trees, the sunsets, and perfect fall weather / temperature, the natural solid rock foundation under the grass and trees. The weather has been very fun. A few quite cold days (like below freezing) but mostly some perfectly warmish days. Some exciting rain and thunder storms and high winds, but mostly sunny skies with maybe a slight cool breeze.

- The support of many family and friends. With emails, txts, messages, letters, packages, deliveries, phone calls, we hear of so many people thinking about us and praying for us. We feel loved and armed with resources. Many of the messages have come straight from the deepest places of people's hearts, and we can feel that! Phrases, concepts and quotes have really stuck with me and helped me stabilize my spiritual and emotional well-being.  We are so incredibly blessed to know some really amazing people. And not just know them casually but know some really amazing people, really well.

- Monetary support. For the many generous monetary donations from friends and family we've been surprised and touched.  I'm constantly surprised at what this is costing us and based on past disappointments with insurance companies, I'm skeptical with how much coverage we'll actually get with them. Were it not for the thousands of dollars we've been blessed to receive from our family and friends, this whole experience would be a very REAL financial burden...one that would make me sick to my stomach and very seriously depressed.  This financial blessing was something that Heavenly Father blessed us with before we even knew we'd need it.  So when the bills actually arrived and invoices were due, we had money in our account to cover them all. Amazing.

- Our children. The blessing is two fold. God has blessed us with wonderful children AND he has blessed us with people to help take care of our children. Charlie, Alec and Gwen bring joy and meaning to our lives.  They are quick learners and resilient...they seem to understand, at least at some level, why we have to be apart right now, and they seem happy and excited for whatever adventure lies ahead of them. It would be so much harder to watch them drive away if they were screaming and crying.  Probably most of their happiness is a product of the capable hands in which they've been placed.  We have been blessed with Grandparents, aunts, uncles and cousins who we trust implicitly and who have been so kind to send us pictures and updates of the kids.

- Our parents. I once said in a testimony meeting when I was a teenager how sorry I felt for everyone else there because they weren't lucky enough to have my parents, for parents. I know Chris feels the same way about his parents, and we both feel the same way about each others' parents!  Just last night after a long phone call with my parents, Chris commented on how wonderful my parents are. He said he knew he was lucky that somehow he got me to marry him, but he didn't realize how much more lucky he was to get my family too.  Both our parents have told us and shown us that they are ready to do anything we want them to do. They are a nice balance of helpful but not overbearing at all.  They lead and guide us without making us feel that they are in charge of us still.

- The scriptures. Particularly the recent conference addresses, for me, and late Alma (maybe 58...stripling warriors and other stories), for Chris.  When the Nephite armies containing the 2,000 young Ammonite sons, prayed for added strength to their army and deliverance from the onslaught of Lamanite fights the Lord answered their prayers not with more soliders, but with more peace...not with a miraculous disappearance of the Lamanites but with more faith. "Yea, and it came to pass that the Lord our God did visit us with assurances that he would deliver us; yea, insomuch that he did speak peace to our souls, and did grant unto us great faith, and did cause us that we should hope for our adeliverance in him. " (Alma 58:11) This particular verse has meant a lot to Chris recently.

- An unanticipated free weekend. Saturday morning two weekends ago we said goodbye to Brittany and Jane as they headed home to Texas and goodbye to Chris' parents and our kids as they started the drive to Utah, so by 9:00am, we found ourselves alone and feeling relatively normal. We hadn't planned for this but used the rest of the day, the next day and the next day to enjoy spending time together without really having to get anything done.  Chris used his normal amounts of energy to dote on me and I used my newly freed time and attention to connect with Chris and catch up on sleep.  We're so grateful for that unasked for blessing.  Again the Lord blessed us with something we needed before we even knew we needed it.

Monday, November 18, 2013

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. :)

Friday, November 15, 2013

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.

Thursday, November 14, 2013

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. 

Wednesday, November 13, 2013

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. 

Sunday, November 10, 2013

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. 

Monday, November 4, 2013

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. 



Saturday, November 2, 2013

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.