Monday, August 26, 2013

Worse

Man, I hate this. I really do. I knew it'd be worse than the last time he did chemo but I just didn't know what that would look like. Now I know and I hate it. I guess it helps a little when I think that without it, Chris would probably die a slow and painful death. Well, now that I type it out, I realize it should really help ALOT to think that. All this crap and pain is supposed to heal him.

Chris has been fighting off a cold for almost a week now only with such a low immune system his body is not being a very effective fighter. He's had a sore throat, and nasal congestion that keeps him up at night with difficulty breathing through his nose. Its evolved into a painful sounding cough that also keeps him up at night. He still gets up, showers and goes into work to teach his class or do research or go to meetings for at least a part of each day, and aside from his congestion he does a decent job of seeming normal. Then he comes home wiped and exhausted. Every other day he goes into the cancer clinic here to draw blood, keep track of his levels, and get neupogen shots (that same miracle, incredibly expensive drug that I used to inject in him last time which boosts his white blood cell counts). We try to take it easy at home, and on weekend just laid low at home: picking up a bit, watching movies, reading books with the kids and going to bed early.  That's not exactly difficult to do but for a house-bound mom ready for a fun Friday night, it does take a little adjusting.  He's able to feel up to going to church and we all enjoy our time there, but again he comes home tired and needs to nap while I make dinner (which, thanks to Dixie's Frozen Foods isn't too terribly difficult) and keep an eye on the kids. After a fireside which we again all really enjoy, we head home and Chris is again exhausted (me too this time) and we go to bed early.  Throughout the day, I've started to have cold symptoms and am feeling sinus pressure with a congestion, sneezing a lot with a runny nose.

He sleeps terribly, again. His hips are aching deep in his bones (bone pain from the Neupogen) and he can't get comfortable. I find some tylenol for him and we decide to keep up on taking it so it doesn't get as bad again. He has night sweats and soaks his pillow and shirt, despite a fan blowing directly on us all night.  Morning comes and he showers, drops off Alec at school for me, and heads in for more meetings, another doctors appointment and some work.  I get a text in the middle of the day explaining that his blood count levels are low, at 500 and they need to be at 1500 to be eligible for the next Chemo treatment scheduled for Friday. Also, he's running a temperature of 99. If its over 100 or maybe even over 99 he's supposed to go to the hospital. The nurses give him antibiotics and some more neupogen for me to give him tomorrow. He has a late meeting and arrives home just before 6 and I've got dinner on the table. I can tell through dinner that he's barely hanging on so as soon as his plate is clear I tell him to go upstairs, take a shower to try and reduce the fever and relax his body, take some more tylenol and go to bed. He looks at me with sad eyes, looks around at the messy house and kitchen from dinner, the table full of food and dirty dishes, the kids bouncing off the walls with renewed I-just-ate-dinner vigor and asks me if I'm sure that's ok. I try to muster up energy and think of how important it is for him to get feeling better so he stay on schedule with the treatment and reply, "Yes, I'm sure. You need to sleep." He thanks me, kisses my cheek, so we don't spread more germs, and slowly heads upstairs.

He was tired alot last time we did Chemo too, but it usually only lasted for 3 maybe up to 5 days from the treatment, and then he was fairly normal and we had a nice almost 'normal' feeling week before we did it again.  And last time, he miraculously didn't get sick at all through the whole 6 months of winter and chemo treatments.  But it makes sense that this time, with the chemotherapy drugs being even harsher, it would affect his immune system even more; that he would be even more tired for longer.  Its scary and stressful to think that if his levels aren't high enough we can't do his next treatment cycle. My mom already has her tickets to fly out and watch the kids so I can be with him at the hospital for those 4 days again. What if he can't shake this cold and his levels never go back up? Is that possible? Would they decide that he just can't handle this kind of treatment and tell us there's nothing they can do for him?

My mind swirling with questions I can't answer, I try not to despair.  Looking at the clock I prepare myself, realizing that the kids are just going to get to bed late tonight. I let them run off some energy while I clean up a bit and then have an idea. Maybe if I suggest some computer time, they'll clean up for me? I make the expectations small (only 2 sets of toys each) so I don't have to deal with "its too hard!" complaints. Heavenly Father blesses me because the kids actually want to do my idea and they all end up choosing to 'go the extra mile' and clean up 3 or 4 things each.  The house isn't completely clean, but I decide to not care and just think that its way better than it was and I didn't have to do any of it.

We haven't had a decent Family Home Evening in a while and with Chris sick in bed, I'm tempted to skip it again, or at least call him down to see if he wants to join us. But I resist both and decide I can just do it myself with the kids. Thanks to the Friend magazine my mom left us, I find an easy idea and the kids happily gather round for one of their favorite family things: FHE. Its going so well that its hard to stop and before I know it, 40 min has passed and the kids are 'gone' - running around laughing and screaming as they chase and try to kiss each other. Every now and then I can hear Chris get up, go to the bathroom, cough or something.  Poor guy. Tired me. Happy kids.

Eventually the kids are in bed and I'm at the end of my rope but at least I didn't yell at the kids. At least I feel good inside that I'm not mad at Chris for needing to sleep. I feel good that I suggested he go to bed.  I didn't have to deal with unexpected loneliness if he would've asked 'would it be alright if I went to bed?' All of those things that I didn't do tonight, I did a lot 2 years ago. It feels good to see progress in myself.

I hope my stuffy / runny nose, sneezing and watery eyes doesn't keep me up tonight. I hope Chris can finally get some deep sleep and overcome this darn cold. I should just stop typing and go bed. .... Ok, fine, I'll do it. Goodnight.


Blog book

Yesterday we had a nice time looking through our old blog books. I print off a year at a time and they're like a family journal of some sort. We had such a good time reminiscing that it made me get up the energy to go through photos of our past summer and back post a bit. We were so busy in June and July that I missed out on documenting some fun memories. I've just finished June's adventures in a back-dated post June Happenings. I'll do another one for July after lunch....OK, here is July's.

Saturday, August 17, 2013

Where do I start?

I've been sitting in a reclining hospital chair next to Chris' bed with my laptop open trying to write something down for 40 min. Halfway I'm distracted by the TV and halfway I just have no clue where to start.  Do I go to the beginning? Where even is that? Is it when we first got the confirmed diagnosis from the doctor on my birthday? Is it when we started our 36 hour drive from Edmonton to Starkville? Is it when we pulled up to our assigned house on campus? Is it describing the crazy process of getting lined up with a doctor? Or is it when we meet with our doctor and find out more specifics on Chris' treatment plan? Although maybe I should just talk about what is most in my head right now - the past 24 hours, our first day of his first Chemo treatment.

Maybe I'll just do a paragraph on each of those questions, and try my very best to keep it short. That way I don't have to decide where to start. I'll start at them all. 

1 - When we got the confirmed diagnosis from the doctor that Chris had Hodgkin Lymphoma again, it was my birthday and we were living at a friends house (like we had been for the past month).  After having waved goodbye to the moving truck, Chris was at the Cancer Center trying to get his medical records ready to take with us to Mississippi when the doctor called him.  Blessedly he was able to walk over to where the doctor was calling from and speak with him face to face. I got a short text as he was walking to meet and waited on pins and needles to get more details.  Talking with him was short, as the news was pretty short: It's back.  I had a hard time keeping it together as I started making calls to our parents and the Starkville Branch President. I really let it out on my friends' shoulder, whose house we were staying at, as I explained why I was so sad just an hour before we were scheduled to leave for my birthday dinner surprise Chris had been planning with another good friend and her husband.  We decided to not tell our dinner friends until the drive home from the restaurant so we could enjoy a relatively 'normal' night out. It was actually easier to do than I thought; I usually have a hard time hiding any strong emotions. We had a great time eating and singing along with the 'dueling pianos' at the restaurant and by the time we told our friends I was pretty well composed and for the first time made it through our explanation without crying. I think my tear ducts were empty.  Not so for my friend, who seemed to be tearing the whole drive home. I love her.

The weekend crept by.  The things we really needed to do couldn't be done until business hours started on Monday. We wanted to verify with Chris' new job / insurance that he would be covered before we actually left the Canada, the only place where we do have health insurance coverage. Telling friends at church on our last Sunday there was also hard. We will really miss our Greenfield ward family.

2 - The morning we were planning to do the first 10 hours of our 36 hour drive we had lots of complications that delayed our start by 6 hours or so. We had a very difficult time getting a hold of the right insurance agent. In fact we didn't get a hold of her.  Also, I woke up that morning bleeding again. Ah! I didn't even over do it, or lift anything heavy or jump or dance or run or anything the day before. But we had questions like, "Is this another miscarriage? Will it keep bleeding? Should we leave still?" Thanks to all the calls we were making, we knew that any medical expenses for me would only be covered in Canada, unless it was an unexpected emergency.  After a text from my mom about prayers, and after some quiet moments we felt fine with moving forward with our original plans to leave as soon as possible.  I laid down as much as I could while I folded last minute laundry and Chris loaded the car. The kids were pretty good through all of this, still enjoying the 'new' toys of my friend's kids.  We got in the car, left the keys on the table, and finished our last stops: the library, Peterson's house to pick up something we left there, drop off Chris' laptop at work, and pick up the CT scan slides. Trying to push aside fears and focus on the good feelings, and after 4 months of anticipation and a month of living in limbo transition we were FINALLY on our way to Mississippi.  Here is a picture of our last Canadian sunset...beautiful.


2.5 - The actual drive was fairly nice. We did 2 long days, then stopped for a day at the perfect halfway point in Minneapolis to visit with Chris' cousin and his wife and kids. Chris and him were roommates for 3 years and as newly weds we lived close and did a Thursday dinner exchange. We're all good friends and were happy for our kids to get a chance to play together and chat late into the evening reminiscing. Two more long days later landed us in Starkville. (We also stopped for a little break in Nauvoo and walked around the temple and church history sites there.) The terrain varied from corn fields, to fields of a different crop, we tenderly named, "the other crop." The roadways (and I purposefully didn't say highways because many of the roads we drove on were 2 lane country roads) were lined with big trees and bushes, sometimes COVERED in ivy. The kids did AMAZING...crying and complaining only when any sane person would cry and complain after being in the car that long.  Most of their good behavior is due to my good friend who made us a travel package filled with wrapped presents. 


 
 
 
 

3 - Arriving in Starkville was like walking into bathroom after a 30 min hot shower. First you think, "ahhh..."then it quickly turns to "man, its hot and damp in here!" But most places are air conditioned so coldly that your 5 min walk to the car/house/store feels great. We picked up the keys to our assigned on-campus housing unit and pulled up to this big white house on a hill, next to 3 other like houses (which turns out are used as office buildings.)  I first want to say how grateful we are to have something to move right into, something that is SO CLOSE to Chris' office, something so flexible in its terms we could leave at any month without penalty, and something so wonderfully air conditioned. We are lucky to have gotten an assignment out of all the others on the waiting list. Inside, the first thing I notice are the 10 foot ceilings. For the first time Chris can't touch the ceiling in our house, at least not on flat feet.  The next thing I notice are the beautiful rich-colored hard wood floors in all the rooms...and the 100 year old dust/grime along all the edges, 100 year old scratches and holes. The house is full of 'historic charm'....old windows painted shut, wires painted and tacked along the cracks and fun closet space with shelves tucked in every corner possible.  The kitchen was not my favorite part - paint peeling on every shelf/cupboard, laminate floor squares with cracks and peeled off parts, knobs so grimy they were sticky, no dishwasher or disposal, but the shelves go all to the way up to the high ceilings and the 2 appliances were not 100 years old, only maybe 10, the faucets are tight and responsive, and our round table does (barely) fit in it...if you keep the chairs pushed in.  The rooms are huge and even though the blinds don't cover the extra tall windows all the way down, it does let in lots of natural light. One of the kids' favorite parts is the marching band's practice field out back. It must have been 'Marching Band Week' this past week because they've been out on the field as early as 6:30, and out practicing as late as 9:30.  Although you can hear them playing/the leader instructing inside the house with all the doors and windows shut, its not really annoying and the kids LOOOOOOOVE to watch them. Who am I kidding? Chris and I love to watch them too.

4 - The process of getting set up here was the most stressful part. Thanks to my mom and sister's pleasant and helpful company I only broke down once. We needed to get a mailing address set up (a P.O. Box at the university Post Office since the home's on-campus nature wouldn't allow for mail delivery) the natural gas registered to our name so we have a 2nd proof of residency, new cell phones so we have contact info, arranging to get our moving trailer dropped off and unloaded (thanks go to the Branch here for all the help!) cars registered, cars inspected, signing up for US car insurance, Mississippi State Drivers licenses - which meant taking the written test again, Alec registered for school that started 4 days after we arrived ...which included needing to get registered for a MS immunization record for Alec, and finding proof that he graduated Kindergarten by digging up his report card in one of the boxes, attending the open house, buying school supplies and making sure he has enough clothes that fit the strict dress code.  We also needed to call maintenance 3 times because of a leaky ceiling, sewage coming up from the toilet and bathtub, and no Internet. We also made two 6 1/2 hour trips out to Birmingham to bank sperm.  And NONE of that includes the hours and hours of phone calls between receptionists and nurses in trying to get an appointment set up with an oncologist for Chris and OBGYN for me...or the typical new household set up situations like..."which box has the screws for the kids' bunkbed?" "did we really not pack a plunger?"...restocking food in the fridge/freezer and buying a couch, carpets, and a washer and dryer which are actually kind of hard in small town in the middle of nowhere.  All of this while having to be mindful that we won't actually get a paycheck for a month and a half and will have a hard time accessing funds in our Canadian bank account. Oh, and then there's the main reason we moved here...Chris is starting a new job with a few full days of orientation, deciding on retirement packages, research meetings with potential collaborators and an Artificial Intelligence class to prepare to teach-- a syllabus to write, the semester's projects to outline etc. 

Mom and Hailey and our other car they drove out were INDISPENSABLE. The cots and blankets they brought out were so nice to have in the 4 days we had here before our moving trailer was dropped off, the extra set of hands and distractions for the kids at stores (Hailey is one awesome shopping cart racer), the help with doing dishes and prepping meals, the extra driver to wait the hour in carpool to pick up Alec every day after school, the smiles and laughter and jokes and help picking out carpet and arranging furniture made the past two weeks mostly enjoyable. My dad even surprised us with a visit!! We had driven out to Birmingham, Alabama (2 and a half hours away) to get a session in at the Temple there while we had babysitters, and to make a run to the nearest Costco when around the corner in the Birmingham temple parking lot my dad walks towards us! Never in my life, have I been more surprised. It was so wonderful to see him I mixed between laughing and crying as I hug him.  His presence makes my mom so happy and her joy is so real it spills out to others around her, not to mention he's just a fun person to have around. He managed to cover up / completely refinish and clean these two disease-spreading dirty old grates/vents on the floor in the living room and kitchen. Those cover ups and the new knobs Chris installed on the kitchen cupboards/drawers have made such a dramatic drop in the number of dry-heave inducing grimaces.


    ----whew! I'm making it through all these 'starting points.' Are you still with me? Two more to go ----- 


5 - Meeting with Chris' new oncologist, Dr. Tan, was an eyeopener. We're so grateful they got us in so quick, after a few extra phone calls and requests and explaining our situation.  We had to drive the 75 minutes north to Tupelo to meet with him that quickly and pay out of pocket for the consultation because our insurance doesn't kick in until Chris' official first day of work (which was nonnegotiable), but by saving two weeks of waiting it was without question worth it. Dr. Tan was one of the first doctors we've worked with that seemed to have Chris' medical history memorized before we even met.  He is kind and asked after our kids and spent a lot of time with us answering our questions, and explaining his recommendation and helped us align our insurance coverage with our options.  He has a very thick Asian accent that makes it difficult to understand each other completely but he's patient and writes down the things he is talking about which really helps (especially when we can read his handwriting) :).  He got us in touch with the nearest fertility specialists in Birmingham, AL and is setting us up with the stem cell transplant people in Nashville, TN.  After our hour appointment we came away with a better understanding of how Chris' treatment is going to go. We're going to do 3 treatment cycles of the I.C.E. chemo drug combination, then a stem cell transplant. Each chemo treatment will take place in the Tupelo hospital (75 min drive north of Starkville) and it will take 3 full days to complete. The treatments will be every other week, with a 5 day to 2 week window between the last treatment cycle and the stem cell transplant.  Dr. Tan had also said Chris would need a PIC line since one of the chemo drugs is a 24 hour infusion and its tough on small arm veins.  We don't have very much information yet on the stem cell transplant and have many questions like..... how long it will take? what kind of prep work needs to be done before we start? Can the prep work be done in Starkville or Tupelo? or will it be in Nashville (a 4+ hour drive away), Will he be assigned a hospital room for the entire experience or some type of housing nearby and just check in to the hospital daily for care? Can he be around kids while he does this? Hopefully most of these questions can be answered when we have our first set-up appointment with the stem cell team, which has yet to be scheduled. 

It was a lot of information and some of it (like the treatments being a 3 day hospital stay) was a complete surprise to us. This is going to be way different from our chemotherapy experience in Edmonton. We had been so distracted with all the settling in at a new house that I think I hadn't really thought much about actually fighting cancer. It hit me again and I was kinda depressed for a day or so. If I was honest with myself I admitted I didn't actually want to live here, so far from family, I didn't want to deal with a chemo-ed up Chris again, I didn't want to live in an old house, I didn't want to have to make new friends again, I didn't want to furnish another temporary place with a small to nonexistent budget.  BUT, I vividly remember pleading with Heavenly Father for a Chris to get a job. I remember being completely sincere and willing to live anywhere we were needed....with Chris by my side and our kids around us I knew we could survive and enjoy life.  Now I just have to do what I said we would do, what I know we can do. It just isn't much fun at the moment.  I'm not quite sure how I pulled out of that funk, one might think me preachy, but its my journal so I guess I don't care, but if I had to guess, I'd bet it was the renewed effort to journal with my scripture study that pulled me out of it (like so many times before I had not been so good at that the few days previous). That and more sleep, and some retail therapy because we finally found a couch!! No more nights around the table sitting in camping chairs. We're so happy with this purchase and even though it was a headache to get it home from the Costco in Birmingham, it was worth it. Its modular so the pieces can be configured differently.

 
6 - Dr Tan said the days of chemo could be flexible and so we chose Friday-Sunday, to minimize the time away from work and hope that Chris can still teach all of his classes (at least all the ones before the stem cell transplant where he'll just have to be gone for a month or so). Friday also happened to be the first day our insurance coverage started so we feel really grateful that our move and new job didn't delay Chris' treatment by more than 2 and a half weeks. The flexibility of the system here can also be perceived as disorganization. We were just told to go to the Tupelo hospital around 8 or 9 on Friday. We assumed the PIC line would be put in at the hospital before chemotherapy started.  In Canada, we had a print off with the exact time and location of each appointment, lab, scan or surgical procedure. The day before chemo was to start we decided to call and verify that we were still good to start the next day and find out where in the hospital we're supposed to go. The nurse confirmed everything and said to get there earlier than later to 'beat the rush.'  Still kinda weirded out not to have a specific time we organized everything with Dixie and James who pulled in late Thursday night.  My family had left just on Tuesday and probably the only thing keeping me from falling into despair at their loss was the knowledge that in 2 days Dixie and James would be here! Having visitors/help is so wonderful.  We've both got such great family. We'd be lost without them. 

We walked into the hospital, found admitting and were surprised, disappointed and nervous to discover that they had no idea who we were and had no orders from Dr. Tan.  The receptionists were still very nice and apologetic but I still felt like we had done something wrong or misunderstood something.  After an hour or so they got a hold of Dr. Tan and straightened things out. We were never given an explanation but I did ask one lady if we did anything wrong and she emphatically stated that this wasn't our fault.  We were assigned a room upstairs and walked (well Chris had to be pushed in a wheel chair...hospital policy or something) through many windowless hallways, made lots of turns and passed warped ceiling boards, taped up doors a few construction projects to the oncology wing, which happily seemed well kept and new.  Our room is so nice! There's a long couch that folds into a bed, a comfy reclining chair, a private bathroom with shower and a counter top/sink, a flat screen TV, remote controlled blinds and modern artwork/pictures.  Dr. Tan stopped by and reviewed the plan with us, but said since the PICC line wasn't scheduled they can't do it today so to avoid delaying treatment they would just do a regular IV. No matter. Chris is willing to do anything necessary to fight this. The nurses had a hard time finding a vein and when Dr. Tan checked in during their attempts, he said he'd try and call someone and push to get a PICC line as soon as possible. 2-3 hours later we were wheeled down to the Special Procedures unit and 30 min later, a PICC line was in. From my limited understanding its like 2 IV tubes sticking out of the inside of his arm just above the elbow. They are connected to a long catheter that goes up his vein and empties into his bloodstream by his shoulder.  Its temporary and will be taken out before we leave the hospital Monday morning and put in again a week and a half later for the next chemo cycle.  Then finally around 5pm we were started on his first chemo drug. It dripped for 2 hours then flushed with saline all night and this morning we got another chemo drug for 40 min, then they started the 24 hour chemo drug.  I spent the night with Chris, thanks to James and Dixie bringing up the hospital bag we packed yet forgot to put in the car.  It was nice to see the kids at Taco Bell and chat about their day. Kids under 14 aren't allowed in the oncology wing so Chris couldn't see them but its all for the best.

Overall Chris is doing pretty good! He's got a decent appetite still, which is different from our past chemo experience. We both slept decently well despite a few "vital signs" interruptions.  The TV has been nice to keep Chris awake and interact-able. His been typing on his laptop most of the morning getting slides ready for his first class on Tuesday. And here I've been, sitting in a reclining hospital chair next to Chris' bed with my laptop open releasing my thoughts for the past 6 hours. Whew. It feels good to let them out and to have all this recorded because the plan is to hopefully be done with all this in the next few months and NEVER have to do it again. Someday, we'll read through this, every word, and remember the anguish, fears, hopes, kindnesses, and blessings.  At that point we'll feel happy and grateful that we got through it.  That's the plan, anyway.

Friday, August 9, 2013

First day of school!

Alec woke up quietly, dressed by himself and walked into our room at 6:15 am.  It was perfect timing because we have to leave just after 7 to drive him to his new school. There are over 1000 kids at his school and only 3 grades:  K-2.  He looks pretty dashing in his dress-code-appropriate attire.


When Chris and I got back from taking him we found Grandma watching Charlie and Gwen hit some balls on our private driving range out back...also known as the marching band practice field.