We're just getting started

Alex has told everyone about his cancer - Nodular Sclerosis Hodgkin's Lymphoma (NSHL).   He wrote it to not forget an important phrase, to be able to get through it tear free. 

I've started a Caringbridge page, Alex's whoopin' cancer's a** to update our family and friends, but primarily so Alex can focus on himself.  The first three updates are informational, almost clinical, little to no emotion.  A sort of medical task list - lists I am good at lists, I can do. Everything he has to get done before chemo starts. I want him to be able to look back and remember what we're doing and why.  I like the privacy, we're able to force logins - control who has access.  I don't like the only way to ask for help it to create a gofundme page.  Mark and I can make this work, Dropbox provides amazing insurance, we have savings for this.  It will it be hard financially, but I'll sell stock or pull from savings or something to make sure anything he needs happens.  We've even started an Amazon wishlist - I feel so uncomfortable about it.  One of my work friends, said that I have to let it go and allow the people that care about us feel like they're helping.  We've bought a bunch of stuff - detergent, chemo shirts and beanies, even an iPad for chemo sessions as his no longer is supported and won't work for streaming.

I do wish we'd delayed getting the yards done but that contract signed. We have to do it now. We're half way there. I even ordered a pergola.  Otherwise, he'll not be able to go outside at all during the chemo.  It's not that I mind spending on the front and back yards and having a lovely space - it's that I can't really care about that right now.  The landscapers are working so hard and I can't even remember to go out and admire their hard work.

Beyond the obvious, what can I say that thousands of other mothers haven't?  Nothing, that's the thing.  It's so horrible, awful really.  There is nothing to say. No one to blame, no one to rail against, to challenge and ask why.  Logically, I know I'm not responsible, that I didn't in some way fail him but it sure feels like I did.  

I realize he's a grown man, but he's still my little train enthusiast with all the Thomas movies, trains, and tracks and the car lover with all the hot wheels, courses, and NITRO.  I haven't even cried.  Am I devastated?  Am I terrified?  Do I wish it were me instead?  Yes, of course.  All those things and more.  But I don't have time to cry.  There's no time for any of that.  There's so much to do, I don't even know what to do.  There's a thousand things.  I don't want to take over, but I also don't want him to worry about all that stuff.  I'm good at taking over, I'm good and managing, organizing, sorting problems.  If he were a child, I could take over, give orders, and make all the decisions.  Am I thankful, this didn't happen sooner, while he was growing? Of course.  None of this is easy.

Is it helpful to hear the success rates?  No.  So much can go wrong.  It's wonderful that 90% of the Hodgkins Lymphoma suffers go into remission or are cured, but there's 10% that aren't.  The odds that he would get this and that particular sub-type are so small, that I can't find comfort in math.  We have to do everything we can to keep him healthy, infection free, and in good spirits.  Our family is a tight until - 6 of us, all under one roof.  With an all in it together way of living.  He's got a lot of support - his parents, brothers, grandparents, and friends.

We're pulling out all the stops to try to keep him healthy to ensure a successful treatment.  We've cleared much of the loft to create a staging/storage area for supplies.  We're rearranging his room so he can have the lazy-boy (best purchase ever $106 floor model, while nursing Andrew, it's gotten us through so many stressful periods), I've bought a new fireplace insert of his room (quieter, remote operated).  His grandma's making him a special chemo blanket.  I got the two she gave us so he can have them on his bed.  He misses them, I'm so glad he went to Mesquite and had healthy 1:1 time with them before we knew what was going on.

Today, I am frustrated its a holiday, that so many are off today, tomorrow, and Monday. Is that slowing things down?  Is the preauthorization queue backed up?  How many PET scans could have happened today, does he really have to wait until the 23rd? Will that delay starting chemo on the 15th?  Can we start without knowing the stage, where it is, what organs it's affecting?  Will it spread having to wait until the 28th?

I tell others, I tell him, I tell myself that he's going to have a really awful couple of years and then things will be alright. But we don't know that.  Not everyone lives.  Not everyone is long-term symptom free.  Not everyone avoids getting a secondary cancer. I am totally consumed with his diagnosis.  I have to remind myself to check in on the other boys. Make sure Sean and Ryan are signing up for classes, studying for their driving tests.  Andrew is completing school work.

Tonight, our neighbor, Ryan invited us to do fireworks together.  A normal thing.  A fun thing.  I'm grateful for that.  In a crisis I'm good at the stuff we need to get done.  I often forget to have a little fun.  Since his diagnosis, all I've done is study: Nodular Sclerosis Hodgkin's Lymphoma (NSHL), ABVD chemotherapy, side effects, infusion facilities, other cancer patients journey's.  I can't find enough material to feel able to relax.  When I'm working, sleeping, all I think about is something we should add to the wishlist, a follow up phone call he needs to make, another product change we have to make in the house, it seems endless. 

We're just getting started, and I haven't figured out how to end this first post.  But perhaps, that's the point. We are just getting started.

Alex and I with the Potter on Potter performers, Las Vegas May 2024.