Finis Radialem

The translation probably sucks, but hey.  Google translate is all I have time for.

Today is the last treatment of Radiation. In six weeks we will know if we need to do this crazy dance again.

HOWEVER.

That means today, Matt gets to go nuclear. I mean actually radioactive. To the point I cant touch him or his bodily fluids for 24 hours.  So to a hotel we go to save me some work.

This means I will probably not have the best internet connection.

We shall see.

But if you want to chat, send a message or something.  Try your usual methods, but don't be surprised if it doesn't work out.

Me? My sleep is regulating. I'm not as insane. My doctor gave me something for the intense stress and it seems to be working.  Also, I'm actually sleeping a bit. Even if I'm' not, I can relax enough that it actually does something, rather than leaving me more tired and irritable than before.

Day N+5

There was a delay even during our long day of Chemo.  We saw the PN but getting the infusion took forever. There was some confusion that I didn't think much of at the time.

Then Matt started being tired. No, not the normal level of tired I was used to. He was barely awake during the day. I couldn't fathom it. We struggled our way through, and managed to do the minimum necessary. He looked tired, smelled different and acted very wrong. I was disturbed but too tired to really peice it together. My sleep was going crazy at this point.

Tuesday I finally caught up a bit.  On Wednesday we discover why Matt has felt so weird.

They doubled up his dose of chemo.  Fortunately, they tell us, it was caught quickly. If I had written down the numbers we would have known right away. I hadn't.  So...

From Wed To Fri he was off Chemo. He could even shower!

Well... if he felt up to it. He was even worse during these days, and I was starting to seriously stress out even if I finally knew what was causing it. He was unsteady on his feet which made him singularly unwilling to risk taking a shower, since that is how he fell in the hospital.

I hit a wall Friday morning.  I realized his symptoms were reminding me of my father when his fight against cancer took it's swan dive from functional to marginal... and I just broke down and cried. 

Yes, I have daddy issues. Hello, I'm a girl and knew my father, and he was a nice guy. But they have to wait in line with cancer issues.  Matt's is the first case I've personally been involved with that didn't involve a terminal diagnosis and eventual death of a patient usually within 1-2 years. Dad, ever the lucky one, lived 3 years with stage 4, after being told he had six months to live.  My grandfather lived about a week after his stomach cancer diagnosis, and never left the hospital. I didn't even hear about it until after he died.

Sure, I had one friend who had cancer, but she pretty much pretended I didn't exist during that, and I rarely heard about progress. Then again, I was dating the guy who nuked my social life out of malevolent jealousy.

The others I know are cancer survivors, and ... I really hate to say this, but after the fact it seems unreal. Sort of like those people who I knew growing up who had polio and lived to tell about it. It's almost impossible to imagine how horrible that disease was, even with those gawdawful iron lung pictures.  With cancer survivors and cancer death, it's almost like they are two different diseases. Oh, and there are so many different types of cancer... Yeah, don't get me started.  Let's just say Dr. Google will not be returning today.

Suffice to say it's been a helluva few days, and I'm starting to decant from the past few months. Thanks to the fact that my brain is coming back on line after...a good ten years of a thing I can't call anything but depression, but it's not what most people think of as depression.

I have been a zombie. My brain only functions in tiny aspects, and I push them for all they are worth just so I can feel like maybe I accomplished a fifth of what normal people do in an average day.

I travel through a slow motion loop where an insane amount of effort goes into doing a task for hours that takes normal people 20 minutes.  Reality is flat. I literally had no sense of depth perception, as well as it seeming more like a badly produced movie with no sound track.

All of this was true long before Matt had cancer.  There were other factors, but a part of it is my limbic system has been crashed and burned multiple times... and I have some bad habits when it comes to emotional regulation.  But that's another show. Suffice to say, I'm seeing an endocrinologist who treats me out of the kindness (or boredom in his off hours, I can't tell which) of his heart, and for little more than the cost of the few things he proscribes and heartfelt gratitude. Which he can have any time he wants.

Now that I'm back, it's like I feel all the effects of my accumulated sleep loss from the last ten years.  And somehow, I still feel better than I've felt in years. Because being in misery is still living.

And it's only pain, it's only exhaustion and crankiness, and an endless frazzled anxiety that what little you have will come flying apart into space.  That's really not bad when you feel like you live your whole life encased in Ice Nine, where you will be nice and safe until men of the future dust you off and put you in a museum somewhere.  But life is out of reach and you can't even be clueless comedy relief in the future.

Here's hoping I can clean up these Augean Stables before I lose my mind...  almost before I have it. 

And the cancer thing is on a whole different level.  Until recently, it's been a problem to be solved, a battle upon which to make one's last stand.

Now it's just another part of life.  And I'm not going to be able to look heroic doing it.

Day N.

So it's been two and a half weeks of daily radiation appointments, chemo treatments, and yourn host losing her respective mind as she learns how to sleep again.  Learns how to relax.  Learns how to turn off  "emergency brain" and get back into "post shockwave, yet highly stressful normal" which emphasizes every daily grind deficit I have.

The twice daily dressing changes. The 8:00 AM appointments in a place that makes hospice burnout look good.  Okay I am not being fair, but the chemo place has it's challenges for us.  They do seem to do good work for other people, and we've finally taught them how to deal favorably with Matt's unusual problems.

Like sitting down in hard narrow chairs without arms is torture and a literal pain in the tumor, which coincidentally happens to also be in the ass.

I'm just fracking tired. And I had no desire to write about any of it. In fact, I have had no desire to write about anything at all... save for a few bright lights that clued me into the fact I can't just turn my back on writing forever.  I still have the bug.

Those little moments I use to update blogs and write stuff... has been used for things like... tuning out the world, staring at walls, walking in parks, and in general, cautiously  preserving what little sanity I have left.

Yeah, I was great fighting fires and running to the ER every day. This, "Cancer as an every day reality thing?" Not so much.  Then again, it pretty much ate up my reserves and now I have time to deal with the fact that they are gone and need recharging.

But what prompted me to post is that there is only one and a half weeks left to go in this ongoing struggle to kill the mango of death. It's now about the size of a dried up mission fig that got run over by a waffle truck.

They say that the tumor *should* be dead about six weeks after that.

I promise to update more often than I have before, but might not be every day.

Love you all. Stay frosty, my friends.

Day 20

Wednesday

Note to self: Early morning chemo appointments are problematic at best.  In short, there is no good time to do chemo. It just always sucks.  Though pain management (or lack thereof) had something to do with it.

Today was special in that we were shunted off to see a doctor on a day when the doctors were not seeing patients.  We waited over half an hour before people noticed that maybe Matt seated in a horrible waiting area where he has no accommodation to his pain is a bad idea.
Then we got the needle replaced and the new drug packet installed for the pump. Fortunately, that waiting area is actually designed help hurting folks be more comfortable, so it was much better. He even felt cooler in there than in the cramped office room, but I thought the cosy waiting  area was actually a little warmer.

Not sure who was right, there.

After I got Matt home, I zoned out for a while, made lunch, and got Matt something too. He actually wanted some coleslaw that I made.  Knowing how I feel when all I want to eat is yogurt and ensure, I was stunned to hear it.  He even liked a recipe I'd made for myself.  That was kind of cool, actually.

Then I got our supplies ordered. Apparently, these types of wound dressings are not much in demand. I have been to a grand total of six places that don't carry them.  I finally got them from the first place I went to, that kind of creeped me out at first. Then I discovered that they are affiliated with a home care store.  I went there and ordered extra thick "Chucks" otherwise known as "under pads". They have nothing to do with underwear except you lay on top of them.

We had a nice talk and got all the stuff we need for a dressing change for the next month.  Also got enough chucks to last a month, too.  So it was a long term win. All my stuff is set to arrive on Monday.  Though the chucks I have to pick up from the store.

Then we did radiation. Again.  Well, at least I got to read for half an hour in a pleasant waiting area inside the hospital.   I sat down and found a cosy looking hideaway and was startled when Matt found me.
But I wanted to look at trees, not people. So... yeah, one of those days.

My days revolve around tiny details these days. But I have to keep them all in the air at once.

Day 18. II & Day 19.

Radiation happened, and other stuff. I bought a new purse at the gift shop, because the sketchy zipper on my old one finally gave out in the middle of doing things this morning.

Then  I had to go back for my rain jacket that I left in the waiting area.  But I had to take Matt home first, because sitting around to wait is literally a pain in the ass.

 Then I bought new charge cables and a new camera bag.

This bag is awesome.  Unlike the old one, it slings comfortably over my shoulder and balances the weight well against my back. it has room for a water bottle, my tablet or a kindle, plus my camera stuff. I think I could even put my big telephoto in here, yet claim to be traveling light.  :)

Did my best to get to bed early, and my anxiety meds are still in effect. Was a half hour late taking them, but it doesn't seem to have affected much.

Day 19 is the day of Thrush.  It was bad enough neither of us slept.  But we can't call a moratorium on yeast.
I solved the problem-- at least temporarily --by eating a full 16 oz container of plain yogurt in one sitting.  Here's hoping I can get Matt to eat his yogurt.

But I can still want mosquitoes to all die.  This is also relevant to my post about the camera bag, because the park I want to take photos at is infested with them.  This park has been submerged and washed out by the recent storms-- and therefore is a breeding ground for the pint sized vampires. They won't let the DNR spray for them anymore, so if malaria and West Nile comes back STFU.

 There's a reason why my other purchase was industrial strength, deep woods OFF. I just wish it still had DEET in it. Stupid alarmists.   If the Enviros want to get after me for wanting to call genocide on those vicious little creatures, Why yes, they can.  No, don't bite me, the mosquitoes already do.