The Cancer Update

So here’s the update, it’s been 3 insane days but here’s where we are with things.

Monday we got the results of the PET/CT and it’s a mixed bag:

  • Primary Tumor (Esophagus) – Stable, no growth, no loss – standing still, looking good (honestly I think it’s better as swallowing is INSANELY better) so good stuff.
  • Cancer Markers up, it’s in the system actively and some involvement possibly in the lungs ๐Ÿ™
  • The Standing Treatment Plan: Not too effective. Basically its doing some good as I see it to hold the current mass at bay, but it’s not doing that “all over” clean up we need.
  • Doc suggests a second set of eyes from City of Hope again to really just tag team it and get us on a new plan based upon maybe something new they know!

So that’s where we ended on Monday, thus Daisy got to work on a 2nd opinion from City of Hope – well she took and called got us an appointment for Thursday, but let’s just say Thursday… well became Tuesday. As yesterday at around noon we left home for a trip down to City of Hope as they were able to see us at 2:45 – which led to the following:

  • New plan called Full Fury (sounds epic right?) same course treatment schedule – every 2 weeks, pump for 3 days, few new drugs in the mix, but only one new side effective which can be managed with drugs.
  • Genetic Testing Started – This can open up some new doors for more targeted treatment – results will be in next Tuesday so that’s neat I think, but warned them as a redhead I am a mutant, but they said it didn’t matter lol
  • Was blessed with decent traffic but a day on 1 hour or so of sleep, plus no meds trying to balance out a little left me well, exhausted.

Enter today, follow up with my oncologist, and he agreed on the plan, so he’s kicking it to insurance, we start Monday.

After a wild day though I crashed for like 6 hours, we have a plan, and I have a week off to recoup, and I needed the sleep, I woke up and ran to my mailbox at the UPS Store, was amazed to find blessings galore, some chocolates from a customer thanking me for help & wishing a merry Christmas, and a church I host sent a gift which is HUGELY a blessing and will help pay for a few medical bills I have that need to be sorted – so in all of this still one truth: God is Good.

Currently battling blood sugar inflation due to the steroid I took earlier today, but going to do some light work around the house as energy allows and sugar burns off – but figured I’d get a bit more detailed update than what I normally post to facebook, but thank you all for your prayers, support, even helping with cravings of even boston baked beans ๐Ÿ˜€ love the support always, helps me stay positive knowing I’m thought and cared for more than I may know on a day to day basis.

Have a blessed night all, I’m off to burn off some sugar!

Just a sterotypical Monday.

Oi. What a day. I’ll get to the cancer stuff another day, but computer-wise – really?!

So basically what happened is I sat down to test a drive, and when I looked at it – seemed all good… however turns out I have the same M.2 drive – didn’t realize I bought the same one as my primary system drive, and after having an Android phone format the new M.2 portable setup, I thought “why did it do so many partitions?! I just need the single one for storage.” The reason? That partition layout was my main drive.

Thankfully it simply trashed a partition that didn’t contain my primary data, but it screwed up my boot setup so I figured “I tinkered with this install, let’s just rebuild it.”

So a quick run of this:

rsync -azvv --progress /home/cbrown /run/media/cbrown/m2baby/.

I freshly backed up 81GB of data in like 1 hour? Then was able to install Manjaro fresh and clean and shiny, then took a snapshot of my installed apps and restored that, while data restored, then once it was done an hour later (okay an hour and a little change, disk access was a little busy) I rebooted, and I’m 100% good to go, Wavebox, Chrome, etc. all loading up fine even Steam Games.

Never was able to do that with Windows in the olden days, unless I had a good snapshot – it was reinstall like mad, then re-configure, re-everything – but all my apps carried over without issue, only thing left to check is to see if screen savers kick in with Xscreensaver installed we shall see!

But a typical Monday ended in an adjusted backup script to the new M.2 portable stick, but with rsync’ing it 81GB stays fresh and only brings new goodies – so again I could complain, but in the end, it all just worked.

I’ll talk a bit about what’s going on in Cancer land in a few days, as I have no real “solid” answers, to some degree, but in the end more docs to talk to, some good/bad news – but I have a peace, thus why I am not rushing out saying “HIT THOSE KNEES! LET’S PRAY!” now you can always pray – but not looking to worry anything with at some level, unknowns. More soon though!

For now wrapping up the day, nice to have a working station again, tomorrow if I’m up – tuning up the Hackintosh as my new gateway to the network – lots on my head to do, but for now hoping to wind down and sleep soon. Night all.

God Only Knows!

I saw the news of this today earlier when FK&C posted on their Instagram linking to an article which leaked a 30-second clip preview – pretty awesome, but the song lately has really rung true with me, God really is one of the only ones who knows what I’m going through.

I find myself lately just not feeling great, tests pushed back, holding off on work, feeling bad, but in some cases, drugs don’t help – pain has been up a bit, even now I was nearly asleep – then just wham. Can’t get comfortable – I try to explain what I feel, but honestly sometimes I do feel alone in that maybe no one understands it – but then two thoughts hit me: 1) I don’t fully understand why I feel bad, and 2) God knows exactly what is going on – and the last few days I just haven’t really listened to those two things, I know I need to trust God but when the world is just madness around you, and you feel like you can’t accomplish anything – just feel defeated.

Today I got some mixed news, no PET scan but did meet with the oncologist who explained things aren’t reducing quickly, but they aren’t getting worse, and that the road for this isn’t likely to be weeks, but rather 6-12 months – I know this has never been a road that was well defined, but I keep trying to remain hopeful that it will be done soon, but as it stands, unless the PET scan shows a very different picture, the road is a bit longer still.

Hoping for a better day tomorrow. Going to try and get some sleep here soon again, maybe I just need a new bed? Better couch? A fancy massage chair? ๐Ÿ˜€ I appreciate everyone’s continued prayers, encouragement, and sometimes even just listening to me say I’m going to cheese bomb a place out of frustration (it sounds dangerous, but it’s actually in theory quite delicious, send Ritz Crackers) – but God has a plan for all of this, I don’t know it, I don’t understand it – but just have to keep remembering the promise that He knows.

Compression?

Giving this a try – a bit of an experiment, but I have arm compression and leg compression on + compression socks! So far it has reduced the bone pain a bit, kind of crazy, but at this point, since I can’t do the hardcore drugs (Norco) and the suggested anti-histamine option doesn’t seem to do anything. Compression? Why not!

The last few days have been a bit rough with pain, but trying to decide if its worse than 5 straight days of Neupogen – its annoying since legs and arms hurt at once vs. 5 days legs legs legs legs then arms as the shots wear off, M W F gives it enough time to start wearing off, then it kicks up again, not sure if I like it! But so far, compression seems to help some, so I’m wandering around with arms and legs all covered.

What is Normal?

Honestly, I don’t even know anymore.

For me lately, that’s the thing I’d love to get back is normal. Things keep changing around me – this past week my daughter started KINDERGARTEN! To have a 5 yr old was a big change in all of this, but this year is just flying by and honestly? I don’t even know what the date is some days. Thankfully this digital age has things blinking with the number so I get it after a few hours of waking up.

Pain has been a big deal lately, there was one other thing, but it’s a bit more TMI then I’m prepared to share – but a scare, only to figure out what it was (or what I guess it was) and have some peace, but this week a lot of things go into motion, some shots, some blood work for shots, a CT scan on Friday then next week on Thursday a PET scan, and we’ll know more where we are …. maybe even closer to normal?

Energy has been hit or miss the last few days, even now there’s part of me ready to go go go! Then the other part just wants to lean back and enjoy tunes and not work, but I told a few folks I’d have some things done on Friday, and here we are on Sunday, and things are still not done, and not knowing what is coming Monday (please no Neupogen!) but would like to get a few things done.

The new computer is up and running, nice to have a bit more stability in things, still fine-tuning, one of the monitors I picked up on sale was broken, backlight on the whole left side was dead, so back I go to return it this week – but nice to have things running a lot smoother, and able to get a lot of things done, migrated a site and installed new software tonight.

Normal I will find you. I’ll be back to it soon enough.

Farewell Debt. It wasn’t fun.

Been a few times in my life I used credit cards a wee bit much – expanding the business and needed to extend funds, then the gamble didn’t pay off, then life happened, then it got backed up – but this month I have finished off 2 lines of credit! 2! Both were closed long ago with no further transactions allowed so its just been debt I’ve been slowly chipping away at, but one was so close vs. waiting a few months to knock it down, just killed it. The other was a bit more but I just felt like why keep it hanging its the lowest hanging fruit, and it’s done.

Leaves me with 3 lines of credit left, and adjusted 2 of them today to take the amounts from the other two and increase how quickly they come down, exciting stuff! The 3rd if these two jobs I can wrap up this week may just do a quick lump payment and knock it down a peg but chemo brain is in full effect so might not be the ideal week, but going to try and get these projects wrapped by tomorrow, one does rely on a customer but I think they’ll want to get going sooner than later so shouldn’t be so bad.

Woohoo! Debt-free here I come!

Nerd Update

Cancer is one of those things that’s really taken up most of my time, ya think about it as you are having bone pain, curious if the treatment is helping, but tech wise at home, I’ve come to a conclusion that I want to slowly phase out my primary rig for Linux vs. Mac.

Why Linux?

Why not? Free, secure. I use it nearly every day from the command line as is, and even on my mac using Terminal to do a lot of common tasks – so it seems like the logical option – even looked at an option to virtualize my current Mac possibly set it up on KVM to run it on a second monitor as a dedicated piece of hardware.

Then the old PC thinking of making it into a computer for the girls, something possibly Linux or ChromeOS – haven’t landed on which yet, but keep it simple, clean and secure so Daisy can do her shopping/banking without worry and Lilly can do some ABC Mouse and Reading Eggs etc.

When?

Well I wanted to go AMD Ryzen and chose one with graphics built in, and did some research on how well its supported, basically just have to ensure the kernel is current, but even then as it becomes more primary probably just pull the Radeon RX560 from the Mac and put it in the new Linux box which then also will lead to 2 new monitors as the old Dell 27in’ers I had one died, currently using the TV in the office as monitor 2 but for the linux rig get 2 27 or 32 in monitors for a bit of multi-tasking.

The parts are supposed to be in on Wednesday, so Kindergarten -> Rest -> Errands -> Shot or Pickup Lilly – not sure which but hoping energy holds and we can push back Wednesday’s shot – as Neupogen as it builds up to restore my white count really really makes the bones hurt – and by Friday I may be getting some more meds.

But that’s cancer talk! Parts Wednesday!

What?

As I didn’t want to break the bank, but still have some decent power went Ryzen 5 2400G (3.6Ghz but can scale to 3.9Ghz) should be interesting to see how it stacks up to the Intel i5 3.5Ghz in the Mac – but 16GB of ram, the same case I have now for the Mac, but an NVME drive as the primary, should blow away speed and then some.

Manjaro Linux for the starting flavor, see how it handles the hardware, I don’t have a home Linux rig dedicated at the moment, but some SSH keys to regenerate once thins are stable and running, but if not I have a few thumb drives I can test-run Ubuntu/Fedora/PopOS with as those are my secondary options – but I’ve really enjoyed Manjaro in testing on a Virtual Machine.

Should be fun to work with and get rolling with as a new primary desktop and really just ease into it overall, so we shall see how it all goes. Once it’s setup and running smooth – I’ll post a screenshot and update on performance, but moving forward, I think Linux will give me a bit more stability, vs. Hackintosh which honestly when things go wrong, I just don’t have the time anymore to really dig into it, and the solution of just buying a mac – the new Mac Mini’s are really about as much as I’d spend, however they felt sluggish and not as responsive – so build it, Linux it, something new/old! ๐Ÿ˜€

Dear Cancer…

So I’m not entirely sure when you moved in honestly – but your stay is coming to an end. Tomorrow we start 2/4 chemo – and I am thinking you are going to disappear more and more.

May have knocked me down some, but I’m slowly getting back up, I’m slowly working to recover life, may not always do it well or have the energy to do everything I could do before, but one step at a time – little more energy each time.

In 2 more treatments, I’m looking to hear the words “remission” or as I call it “eviction” your stay will be done. You’ve changed my body, my hair, my daily life – things will be better. Restored. Renewed.

So farewell cancer. This hairstyle will be great to be rid of and go back to my amazing red locks ๐Ÿ˜€

Cancer Update

Seems like a million years ago this all started with pain. A solid 7 months now and counting but cancer markers in the blood as well as size of the mass are all down!

Now sadly doesn’t mean I am out of the woods yet, just means we are getting it under control. Did another round of chemo this past Monday full dose this time and no radiation. Feeling better ish compared to full weekly radiation but still fairly puny as chemo has side effects and one of the meds side effects is joint and muscle pain. Tylenol and Advil do very little, I have stronger meds but sadly nutrition wise, not a good idea to be knocked out.

This week we visit City of Hope to ensure we are on a good path, not too concerned but first big trip and weary about the pain mainly.

What a journey! I mean from pain to cancer to treatment …. Crazy. Writing this on my phone and not much more to say thus going to call it a blog and hit post. Thanks for checking in!