Everythings

Jenny here.

Day 7 has arrived.  It has been one week since the transplant.  The week, in general, has gone by pretty quickly.  There has not been much in the way of surprises.  It has been fairly "expected."  By expected I mean, fatigue, low appetite, weight loss, nausea, vomiting, diarhea, and dropping counts--just to name a few of the daily fun symptoms.  He's well medicated and it would be worse without them, but it only does so much.  So, it's going as expected, but not easy for Wil.  Although being with staff who we have had this whole journey, we often look back to December 2013, and it still feels remarkably better than what he has gone through previously.  

Most of the current symptoms are directly connected to the brutal chemo and TBI he had prior to transplant.  His WBC has been .01 for days now, with a dip to 0.0.  That's right.  No white blood cells to speak of...but this was the plan all along.  Hit bottom. After all, he needs a clean slate for the new cells.  Now he will start the slow climb up.  He needs a WBC of 1.0 (1000) for two consecutive days to be discharged home, which could happen in the next 7-10 days if things go well.  This level will still be neutropenic (4.0-11 is normal range) but good enough to go home and begin the recovery/outpatient follow-up, for the next 6-12 months, and our hermit exsitence.

So far he has only needed one platelet transfusion, but those counts hover right around needing one.  It's likely he will get blood products on and off until his body is producing its own.  Every day they check to see if he will need blood products and if he has any symptoms of graph vs host disease or infections.  We are told by staff, our online community, and patients up on the floor, that day 12 seems to be a turn around point where counts rise some and people start to talk about going home.

In my mind, over the past week, I have this cartoon vision of cells with suitcases, UHaul trucks, boxes, and roadmaps.  They are just driving along down the highway, off to a new job and adventure.  I'd like to think some of them have capes, will assume super hero employment, and truly save the day, save my husband, and protect this life we have together for years to come.  They don't know it yet, but we are counting on them so much.

Right now the cells are still consulting their maps and finding their way to his bone marrow where they will be setting up their new homes, moving into a new city called "Wil."  With any move, it takes time to get settled in, unpack, and get a feel for the new surroundings.  It will be weeks until they engraft into his bone marrow (although there is the possibility they could decide not to at all).  After they engraft (when counts really start to creep up) it will still be months to a year before the community is happily producing enough cells to be a normal immune system and a new blood type.  

Side note:  Eventually Wil will end up going from O+ to B+, and we are holding tight to the thought that that is exactly what we need to do--Be Positive--but it's not an easy feat some days.  Up here at UTSW, it's so cozy and supportive and safe. Staff cheer us on daily, validate the love we have for each other, tell me I am doing a good job (and tell Wil he is lucky LOL), empathize with all we have been through...So many times I just weep happy tears as they walk away.  I feel so visible up here, by people who we have known such a short time, but yet so intimately.  I will never have enough words to express my appreciation for them all.  But soon enough the training wheels will come off and we will be back at home...where we want to be, but where the life changes will really start again.

Just like any move to a new place, things can get broken along the way or go wrong or not be peaceful.  Without a proper "security system" (immune defenses) to fight off attacks, Wil will be susceptible to infections, from anywhere and at any time, all of which can be life threatening.  Some cell families may decide they don't like the new community and want out or decide to not be nice neighbors and attack Wil (failure to graft or graft vs host disease respectively).  The scenarios are varied and vast.  We are lucky to have treatments available to us, including the clinical trial drug, to deal with situations that arise.  At the end of the day, however, each of the what-ifs are scary and possible.  This 3rd chapter has only just begun and there's no way to cheat and read the last page of this book.

Except for clinic appointments, we will be at home for the next year.  Visitors could be OK, but with heavy restrictions.  Heavy enough there probably won't be many possible.  No plants or flowers please.  No outside food. If you have been around someone who is sick in the last 2 days or even have the sniffles, please reconsider.  Kids aren't a good idea right now...this one breaks my heart the most, but given its school time and soon to be flu season...I know this time will pass, but what an isolated time.  Please e-mail, write, Skype...Wil will be a shut in, and even for an introvert like him, I think this will be a very lonely time.  And invite me out...even though there is not a place I'd rather be than with him, my extroverted self, exhausted caregiver, will be withering away if I don't get out sometimes.

Wil has been taking it mostly in stride.  He has felt sick and tired for almost 2 weeks now, but considering what his body is going through, what it will continue to go through in the coming months, he is coping OK.  Transplant day was emotional, as was the day after for some personal reasons, and enough change in his affect that his oncology team had the psychiatrist come eval him.  

If you know Wil well, you understand he takes just a little more time to process feelings, internally, before he can open up about them.  The months leading to transplant had a heavy price tag for him emotionally, in the way of relationships.  The mix of feelings and fatigue made for a few quiet days, as his body hurt and he spent time processing the past year.  For me too.  I'm happy to report that by day 3 he was coping better, talking, and more focused on the task at hand--building a new immune system and life--than the past issues he can't control.  (And he passed his psych eval...just as I had told his oncology team he would...with all he has been through, his responses and coping are normal.  Right now, however, every symptom, whether it be physical, mental, or emotional, has to addressed promptly to ensure him the best outcome.  All his energy this year has to be about wellness.  We are not in a place to turn away help these days and, in the end, the eval was a positive place for him to debrief it all).

And for me...I so appreciate the people who have reached out.  It's not that I can't call you or text you, it's just I'm distracted these days.  Each time one of you drops a line though, it helps hold me up.  Us caregivers won't be calling you to ask for help because we are weary, because we forget to take a break and take care of ourselves...because we know you are busy with your own stuff and feel so grateful for anything you have already done...we just won't ask often.  If you put us on the spot, we won't always know what we need. Anything that is in your heart to do, however small you may think it, feels really really good though and is much appreciated.

I spend most of my days lately very in touch with being scared.  Ugh.  I know that is not what people want to read.  Hopeful blogs are easier to read.  I don't even want to admit it to myself.  Faith, hope, love...YES!  All three.  Working on being mindful...check.  Take one day at a time...no other option there!  Lately I am just more aware of the fact that life is out of my hands, even in things that I CAN influence.  This usually makes my head spin.  To be or feel anything else than what comes up in the moment somehow doesn't seem to honor this experience though.  My real intention is to just get better at creating more space for all the dark emotions, not drowning them out to be something I'd rather be.  

I love the parable about the glass of water and the lake.  If you put a spoonful of salt in each, that glass of water will surely taste like salt.  The lake however, not noticeable.  Same salt, but different amount of water.  And so it is with feelings...stop trying to avoid the salt and just make a larger space for them.

The reality, and where my fear comes from, is this:  there is not enough of me to go around, to do everything I should do, and yet with so many restrictions, there are limits to what anyone can help me with too.  I know I will need to make priorties and do my best.  It's been the theme to the year.  The feeling of inadequacy, the knowing I can't do this next leg "by the book" for a best case scenario...it can be a little, ok I'm lying, a LOT overwhelming.

My next year looks a little like this (just a few examples):  

*Work 45 hours/week whenever I can (at this point I make enough to pay all but one bill--my student loans--if I continue to work full-time.  I've had to decide to let something go, and despite trying, the company that bought out my loans are not willing to work with me very much, so I am just doing what I can to pay what I can.  If you are someone who prays, I'd love to find a tender heart in that company somewhere to give me a break for the next 12 months).

*spend 10-20 hours a week at clinic with Wil (unless he has complications, then who knows!)

*grovery shop several times a week (Drink milk more than 4 days open?  Nope.  Let veggies sit in fridge more than 2-3 days?  I wish!)

*cook healthy meals daily, the immunosuppressed way.  (Leftovers? Outside food?  Sadly too risky)

*clean and sanitize every day (Not cleaning the tub after I shower and Wil getting in?  Too risky) 

Obviously, as a one woman show, I can't do each of those every time.  I have to make calculated risk decisions.  So I wrestle with the "what if I don't clean well enough or I cook something that wasn't clean enough and Wil gets an infection and dies?"  I get that I can't control it all, but there are both heavy expectations and heavy consquences for me as the caregiver, that won't change.  I will have to somehow figure it out as I go.   

And figuring it out has meant a few days not sleeping well, heart racing, over these variables...controllable to some extent but not altogether realistic if I am also working to support our household.  As much as Wil would like to help load a dishwasher or wash some laundry or vaccuum, he's off house duties for a year.  I have never been obsessive about cleaning...a little dust and clutter?  Fine by me if it means I did something else more fun or helped someone else!  That way of living is no longer acceptable.  I'm in a foreign land.  It makes me wonder, how do people not become OCD after caring for a loved one with a suppressed immune system? 

And then, today, I did the unthinkable, went against how I was raised, as well as my current bank account...and I hired a maid.  Deep sigh...and then a breath of calm.  Wil is my everything.  And I am everything to Wil, but I just can't do everything.

I don't know that I can afford it as often as I could use it, but at least for once and awhile, for a small break, and especially for getting ready for Wil to come home.  I still have boxes unpacked from moving last year, clutter from all the multiple hospitalizations (how do you always come home with more stuff than when you admitted?), laundry unhung...but guess what, for now, I just can't care.  So the undone is being delgated to the office we never use since cancer, with a sign that shall read "2015."  The year I *might* have time to go through it, organize, and purge.  But just not now.

And with that said, if you want to know how to help most right now?  I finally have an answer...sponsor a cleaning or help with cleaning or shop for groceries...these will always be accepted.  But really, more than anything, I will need people on the outside to be like the staff here--gently reminding me, when my head starts to spin, to take a breath and notice what I am doing well already.  I'm not sure how it will all get done.  And so the caregiving saga, that is entwined in conflicting feelings and mystery, of the next year begins.  Wil is just hoping, with all his might, to survive this year.  As a caregiver, so am I...so am I...