Friday, June 26, 2015

All's Well that Ends Well.

Another Day in the life of cancering. Sometimes I feel so good I forget I am cancering. And then I push it and my body sometimes not so subtlely lets me know I overstepped. Most evenings I fall into bed, achey and exhausted only to wake a few hours later.  Instead of fighting the insomnia, laying there stressing over why I am awake- I read. Writing is too active and leads to more wakefulness. But that would be my second choice.

I am woefully behind on blogging, on cleaning, on digital scrapbooking, journalling, relaxing, etc. Yet I am current on living. And that is all that matters. So instead of beating myself up for the blog posts that keep swimming around my head, sometimes in poetic fragments and some completely forgotten now- I keep saying I'm going to just try to write more. And each time I sit- I end up rambling and babbling and feeling all the things that are kept bubbling below the surface.

I know my kids have found the blog online. And that is another layer of crosschecking I hit before I can push the button and send my thoughts out there. It's a crosscheck so many have forgotten these days. The impression that one's own thoughts are so important that voicing them is more important than considering who they might affect. I'm pretty open- my biggest limitation right now is time. Every day is a triage of events- trying to fit in the must do and want to do. The want to do pile sits neglected more often than I'd like. But this IS life.

It's been busy. Appointments kind of busy. Summer is catch up time. It is also time for the kids to have their annual full body and brain MRIs. I had hoped Bella would be ready to try MRi without sedation this time but as soon as we started talking about it, I could see her anxiety levels rising. This is going to be part of her regular medical routine- we need to do it in a way that is the least stressful for everyone. If she's not ready to try- then we wait.  The full body MRI is a new concept. It isn't a well known protocol and we are really lucky to be by a military treatment facility that knows us and is willing to work with us on this. I know so many LFS families who fight insurance and less than knowledgeable clinics to get the screening they need. Despite some of the scheduling headaches and the parking and traffic- I am really grateful that this part of our LFS "routine" has become that.

This week we had Lily's ECHO- we still follow up every year to keep an eye on her heart. The chemos she was on can be pretty damaging and so far- her little ticker is just beautiful.  I have echos every 9 weeks as well- mine was last week. I'll find out the official results Monday at chemo- but from what I saw- everything looks pretty good. They mostly watch my Ejection fraction- it's a measure of the left ventricle's function- but it is a regular reminder of all the possible things that could go wrong. We aren't just trying to keep the cancer at bay- we are trying to keep everything else healthy as well. Same with the kiddos- keeping an eye out for trouble.

We try to combine appointments/trips where possible so I added Bella's pre-sedation(which for the record keeps trying to autocorrect to persecution) physical to the mix. I don't know if it was a slow day in clinic or they just are having a little mercy on us- both appointments took less than an hour. This is a rare thing and I appreciated it.  We celebrated by having an early lunch with Aunt Samantha who is here visiting.

Sometimes the looming stress gets to me. Usually around this time during my chemo cycle- I get the oh shit- next week is going to suck feeling. Yet dealing with my stuff is easy compared to worrying about the kids. We will handle whatever comes our way, and I know we don't have a whole lot of control over much of it, but this is a contributing factor to my sleeplessness. What will be, will be. One day at a time.

Since Phil had the day "off" her offered to take Bella to her scan, to spare me a trip and reduce stress. Yet as it turned out, I had a friend, sans husband who was to receive the results from a breast biopsy that afternoon. Although I knew she would be fine on her own, I also know how important it is to have someone there. Either way. So that morning Phil leaves with Bella, Lily and Sam were getting ready to go to the beach when Lily reports water is coming out of the vent in the laundry room. The exhaust vent. Below the bathroom. Well hello Murphy, welcome to my day. I throw towels down, empty the shelves nearby into laundry baskets and go outside and turn the water main off. I make some calls and get a friend of a friend who swings by to take a look- he cannot find the source. We cannot replicate the leak. This is just like when your car squeaks and it stops at the mechanic. Or the fever that is gone when you get to the doctor.  He says keep an eye out and call him if it happens again. I seriously want to build an arc- because with my luck as soon as he drives away, I will need it.  

My friend's child care plan fell through for her appointment- so I'm wrangling the boy child for babysitting duty- He is walking out the door- I have 15 minutes til pick up and need to shower- as I get to the top of the stairs- I see the bathroom floor has become a wading pool. The carpet is wet in the hall and there is a mini waterfall coming out of the cabinet. I yell expletives- the boy comes running upstairs. I send him down to turn the main off. I grab all the towels and begin mopping the mess up. So much for a shower. I put the fan on high, well away from the wet and I use last nights water bottle for a bird bath, a few squirts of perfume and I am out the door. Phil texts that Bella is out of theMRI and still groggy. I let him know the latest developments.

Phil brought Bella to me while we were in the waiting room. She gave me a huge hug and showed me her IV owie. They were on their way to get a well deserved lunch. And we wait for results.  My friend's results are benign. I am so relieved. I'm glad my luck has not rubbed off. I am grateful to be able to be of service to someone. I am glad this day is almost over. I get home before I remember I was supposed to get my bloodwork done for next week. I'll have to go in the morning.

Phil takes me into the lab first thing. He promises me a special coffee for being a big girl. He has to work overnight shift tonight, it's as close as we will get to a date. As I get into the lab- i get a call from the hospital- always a dicey thing the day after scans. And I always forget the sedation center calls to check on the patient- she is fine- she was eating and playing fine. The lab tech has issues finding my veins. Its gonna be one of those days- I finally point her to the money vein and she draws her tubes. I've just ordered my special coffee when the hospital calls again. It's the lab tech. She forgot a tube. Yep it's just gonna be that kinda week. So we grab my liquid happy and head back to the lab.

We get home and start tidying up the bathroom mess. Phil turned off the valves to the sink and we've located the source and restored water to the rest of the house. we get things situated, the actual repair can wait for when there is time and energy- whenever that might be.  He grabs lunch and heads to work. I get the third call from the hospital. Its the peds hem onc. Bella's scans are clear! Have a nice weekend. And out of the chaos is calm, for now and we embrace it until the next round.

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)