Threshold

Jenny here. We have been very busy prepping for transplant. Busy living life, as well as we can, in between appointments, exams, tests, and bloodwork. Busy sleeping, laughing, and honestly, feeling scared shitless at moments. To be prepared, by definition, means to be in a state of readiness. Sure. In some respects we are getting there. We have the info we need to know this is the right thing right now. Laundry is being done, bags packed, groceries for quick meals for me have been bought, last community outings to movies, restaurants, and seeing a few people along the way.  Yes. We are somewhere, somehow, at least partially in prep mode. 

The emotional groundwork is not quite as easy though. Wil is up against some harsh conditions that stand between him and hopefully his recovery. We are up for a busy, hold on to your hats, year. 

People have asked if we are excited. Whew. Gosh, I get it. I think 6 months ago I thought I would feel excited that this day, this opportunity, has finally arrived. We are 3 days until admit and about 10-12 days until transplant. Excited?  Tearful, fearful, grateful, empty, full, nervous, hopeful, madly in love, happy...maybe every word and feeling other than "excited."  We know, in terms of book knowledge and consents, what we are up against. What we could gain or lose. We know how hard the next year can be.  We know this is the potential cure. We know it is potentially not and what that means too.  It's a gamble, like so much of our journey. 

Life at home the past 2 weeks have been sweet. Couch time, daily naps, snuggling.  Eating fresh fruits and veggies without triple washing. No nausea or vomiting.  Limited meds.  More energy and more normal.  Wil's been helping with chores and holding dogs without fear of infection. I've still been working but trying to be balanced and use FMLA on busy clinic days instead of running around frazzled. PTO is limited, but I decided, with all the upcoming unknowns, to invest in now, the few good,  guaranteed days, with Wil...to be normal-ish before this transplant rodeo heats up. 

(Drive-in Movie earlier this week)

These few relaxed days we have had...I will miss this in the next year or so...when my sweet Mr. Clark is building a new immune system, when 3 clinic days a week are norm, being mostly home bound other days, shouldering the responsibility of keeping the moving parts of recovery together in motion.  I know what sick Wil looks like. Feels like. Acts like. He won't complain...ever. But I know his pained face and how exhausted his body has been in the past. I don't look forward to that at all. 

So excited for the next 13 months?  Ugh. Truthfully, not so much. But here we are. In a very real space, with a very real challenge. Prepping for much of what can only be described as...unknown. I envision us learning to be in the moments, appreciating what we have, because that is who we are at the core even when we get distracted by the what if's. I'm just not sure how this will feel, in the moment,  and that part is scary for me because I don't just want to survive this...I want to be present and focused and alive in the midst of it all. 

Current timeline (like always, subject to change!):  

Monday will be last minute meetings with the transplant team to sign consents and last bloodwork at the clinic. Tuesday will be an early meeting with genetics, followed by a central line being put in (yes, even though he has a power medi port, a chest central line with 3 lines into his chest will be placed in him for greater access over the next 100 days)...then admission on the BMT unit. 

Once admitted, chemo will start either that night or on Wednesday. Heavy chemo. One total body radiation session will happen the following week...and then day 0 of his new immune system (transplant day) the week of the 18th.  He will be monitored for a few weeks on the unit and discharge will happen once he is stable enough.  After that, clinic visits 3 times a week, unless there are surprises (infections, reactions, etc). 

While no website can describe an individual person's treatment, here is a link if you want a rough idea of what this process will most likely entail:

 http://www.nhlbi.nih.gov/health/health-topics/topics/bmsct/ 

Once Wil admits, I will be posting daily updates on our Fight The Big Fight facebook page that also links to our Twitter. If you haven't "Liked" it yet, and want to keep up, giving us a thumbs up will put our posts in your news feed. There will be blogs along the way too about happenings and my process. Wil may or may not answer his phone or be on Facebook as much. He may not want visitors at the hospital. Or he may!  Much is unknown, but I'm available and answering questions if anyone needs updates in between.  And the pups are up for extra loving while I'm scrambling between hospital, work, and sleep (if you are local and want to help, please let me know!). 

In so many ways, Wil's day 0 is my day 0 too. It is the threshold of what is to come for our life together. In the spirit of that, I will be making some intentions for the first 100 days too (more to come on that front). 

And we encourage you to do the same. Don't wait for a crisis.  

Want to reconnect with someone?  Start mindfulness?  Get back to the gym?  Cook more at home? Take up a new hobby?  Go back to school?  Love without holding back?  Forgive someone...or yourself?  Whatever it is, Wil says the time is always now, don't wait for your life to begin any longer. 

If you'd like to share an intention for yourself for Wil's first 100 days, and walk alongside us into a new life as well, we welcome you on the road to vitality. All are invited. The more the merrier and more energy we will all create for this turf we reside on. 

Much love. Much anxiety. But much hope.