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.

Friday, June 5, 2015

Rites of Passage

It was a huge day in our family yesterday. When a military child turns 10, they get their own dependent ID card. This card identifies them for BX priveledges, healthcare, but it is a rite of passage. Since Lily's birthday she's asked about a million times when we can go get it. Yesterday was the day that all the forces aligned.

Mind you, I had scheduled haircuts for Kiera and I. She is leaving next week to visit my mom in Ohio. It's not like mom couldn't take her to get a haircut- but I want them to be able to have fun and not worry about this kind of thing.

We also have a voice recital today. This has been over a year in the making. All week there are long rehearsals. We had lessons yesterday and since the girls had off school, I rearranged the time so it was closer to out hair appointments- might as well make trips efficient. Efficiency can be exhausting- but worth it. My day was full and I hadn't left the house yet. I am grateful beyond words to feel good this week.

Until the husband texts, knowing that we have a hair appointment but not knowing that as it is any given day- our schedule is more of an amoeba than a train. Sometimes a very fast moving amoeba. If we can get to base ASAP, we can get IDs taken care of. Not only does Lily need her first ID, Kiera's is expired so we want to make sure she has one for her trip and mine needs to be updated with his new rank. Which I shrug- while we are there - efficiency- but let's face it- if his rank makes a difference in the quality of care I get at Triple(what I use my ID most for) then well we have bigger issues. Sitting in the hem/onc waiting room is kinda like being on the deck of Titanic- you are all in the same boat- rank spares no one anything in that respect.

So I get the girls dressed- arrange for Bella to go play with her cousins and run out the door. We grab Phil from work and the whole ID process was amazingly easy. It means very different things for each of us. It's kind of strange, my appearance has really changed over the past year and a half. The woman on my ID is gone. I miss her. everyday. But the lady who replaced her definitely worked hard to be here- she deserves her picture on that little brown card.  Plus it gives me a new date to outlive- as my good friend Trish often reminds me- You do not have an expiration date. Kiera looks so much older than the 10 year old version of herself. She is a young lady now. Lily is vibrating with anticipation. If she had any more teeth showing she'd be a dental poster. But it's fun to hit these little milestones. I look at my husband and he looks tired. I know in his mind he's tracking work issues and realigning his day to fit this in. He is amazing with us. He works so hard. I wish it were easier for him. But I drop him back at work and zoom off to our hair appointments.

I haven't had my toes done since I started chemo. I used to do it myself. I didn't want to risk infection. One of the fun sides of chemo is how your nails really tell the story of damage you are doing to your body while trying to kill cancer. Mine are a wreck. Usually I sit there while the girls get their hair cut- but today I asked if they had time for a quick pedi. They did. How about a mani? Well I have no nails but Lily pipes up that she wants one. Of course she does. The tech shuffles us into the back room and gets us settled in the massage chairs. Oh heck this is worth it for this alone! Can my chair do that? Lily asks. She snaps some selfies and titles it Mani-Pedi. Which cracks me up. She picks a pretty purple for my toes and a dark sparkly purple for her fingers. When my toes are finished I go to get my hair trimmed and send Kiera back to get her fingers done.

Just the day before we went to her 8th grade Rites of Passage. The night before she was up late making leis for all of her friends as I sat downstairs trying to make hers. She is mine. I see me in her and sometimes it is really cool. Sometimes its frustrating as hell. The actual ceremony is a hot mess - it's what happens when you let 8th graders run shit. The 8th graders are seated in chairs in front of the stage, facing the crowd. The crowd is standing room only so they've put up extra TV's so you can watch your child on tv. Phil and I settle against the wall. This is ridiculous. They don't even call names in any discernible order. I finally hear her name and pop up to barely catch sight of her on the TV.  I wish I had time to help them make this ceremony better- but I have another 4 years to worry about it before Lily will pass through. I had really hoped it would be better than when Phillip went through it. But change is hard won in Hawaii.

Afterwards she greets all her friends and comments how she doesn't understand why she didn't make the principal's list- she had straight A's her entire 8th grade year. She worked really hard to do it too. I know it's tough to not get recognized when you work for something- but then again we have to temper that with balancing the need for everybody to be recognized for everything. I remind her that I have no recollection of how I did in middle school- going forward and learning and getting better as a person is what matters. We let her know how proud we are of her. I asked if traveling to visit grandma this summer was reward enough and she smiled and nodded- that's what I'm talking about- big picture. 

Lily Kay Monkey

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