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? 😀 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! 😀

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 😀

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!

Nearly a month later.

So here we are, nearly midnight on week 5. So the rundown of what I have had thus far is:

  • 5 Chemo Treatments (1 reduced 20% due to low white blood count)
  • 29 Radiation Treatment (2 missed due to port placement)
  • 2 Hydration Treatments
  • 1 Port installed for easy treatment setup
  • 1 Feeding Tube Installed for Ease of Nutrition.

Crazy really. Just all so quickly done. Just like one day its “So treatment….” then “So feeding tube…” then “So this port thing will save your veins”  – so 2 surgical procedures which even now is still something I’m getting used to – the port alone is weird because it’s under the skin and that’s just … weird! The feeding tube you can at least see and know its there, Lilly says the tube is soft, so its Lilly approved.

I think we are finally getting nutrition under control, I am grateful for the new formula we finally got switched to, no dairy! Milk has been my enemy sadly and I didn’t realize it, Esophagus cancer produces mucus like nothing else, so the milk doesn’t help that, thus we got to a veggie/fruit based shake, and it goes down easy and has made life a bit easier! 

Was able to see my fam as you can see in the photo on the side, for mothers day, was nice to get to see my brother and sister, crazy how much weight I’ve lost in all of this, nearly 30lbs down, a few shy of my lowest as an adult, but crazy how much fat has eaten away in all of this! But was good to see fam and celebrate mom, Lilly took Daisy to lunch so thankfully I had cash to allow Lilly to pay for lunch – not my usual Mothers day plans I try to follow through with but was nice to give something to my wife for mothers day, and my mom getting to just spend some time talking with my siblings all in one place.

Hair is starting to go slowly. If we are indeed wrapping up then I may make it out with something still on my head, but honestly beard and head both are loosing, but not super noticeable simply because my hair is fairly thick to being with, but it was always a possibility, but they figured I’d make it out with no loss, but body is going through a lot, so not entirely surprised.

My rotation of life is pretty standard, long Monday’s, Tuesday through Friday brief morning visit, try and function for a bit, then end up crashing after some minor work, but honestly can’t complain. Swallowing has mellowed added in some extra meds to deal with the risk of infection, and to deal with mucus production, but all in all today I feel a lot better. I slept like 14 hours on Saturday alone! Just another week on the horizon this week, then one more possibly 2 simply because I missed some, but praise God for my amazing family, Daisy and Lilly taking it like champs as it has changed our dynamic quite a bit, but they are both supportive, and Lilly let me know my 100 doctors will make me better!  My mom and dad supportive in occasional supplies mid-week including but not limited to Tuna Fish Sandwiches. 🙂 Sis and Bro both on call if needed, but nothing to bug them about at this point, but as we come around to re-test and such, may need some more fam on deck to plan a shindig to celebrate this being done! 

So that’s really it on my status, been slow to update as some bad days, some tired nights, but today was better, and just wanted to really document a bit since its been about a month. Hopefully, another update soon once treatments are done and I get 3-4 weeks break before re-testing. A break would be nice! Thanks all for your prayers, support and love you are sending my way. Good night!

Day One – Done.

Day one was going to be at last I knew just Chemo. Radiation had a snag last I knew and something was holding it up but that would change.

I got there early after a rough night with an anxious Lilly I think picking up on Daddy & Mommy being anxious, its Chemo, you hear stories of vomiting and general sucky activities. So the Brown house was quiet, but a little girl kept asking about why the train was so loud when people were sleeping, what the neighbors were doing up and letting me know I was going to be okay and holding my hand.

Sleep didn’t come for me till around 3ish, and the alarm was 6:45 am – so not a ton of sleep leading in, but we got up, we got ready – my breakfast choice of the day via feeding tube: Vanilla (it’s always vanilla lol). We headed out.

Arrived and got all my usual intake goodies, weight, check in on changes, diet/meds/pain/mood/fatigue – every visit, that’s the rundown, then met with the weekly “Doc” visit and got a rundown of what was next in the day, and we waited till my name was called – Daisy and Lilly hit the cafe determined to wait until I was done, but Mondays are always my long day, today was nearly 8 hours in total.

So got all my paperwork signed, went through another survey, blood draw, and vein finding (first poke, go hydration!) and then we warmed up the veins and started the first hour, which is the lifesaver as I’m calling it the pre-meds for handling nausea, reflux, pain, and making you relax the second bag is actually just more long-dose nausea meds to really keep that going after all things, so by the end of it I was in heaven strangely – you have to understand this all started because of pain, and I think the steroids may have been enough to cut the pain and Benedryl made me a wee bit sleepy (I may have dozed off).

Then it was the main event, chemo med #1 – 3 hours (felt like less) and I met a nice older gent next to me named Henry – we chatting, the guy across from me we joked with his home nurse, and I prayed as he had a few seizures, but he made it through and went home smiling and told me Good Luck and have a blessed day – overall a great time chatting with people and having only some mild flashes of nausea which went away almost as quickly as they came.

Then it was the second bag which was 1.5 hours chemo drug number 2. By that point I was a little more functional, still occasional wave of nausea, but was able to write up something for customers to let them know what was up with delays & things going on, but then my lovely RN Sheri came and said: “Hey after this, Radiation wants to have you!”  – So this day was now Chemo + Radiation again.

So we wrapped up, I sort of mapped out a better plan in my head of what was to come each Monday and going to better build out my go-bag for the long days, but next was down the hall, waiting for I think 5 minutes and they brought me back to the radiation waiting room.

When I was called back the room is HUGE. 3 nurses got me prepped and had me lay down and they got me positioned, and had me have my arms over my head, asked me to remain still, they’d be out of the room, and the machine whirred to life and did its thing – now for me it was supposed to be 30 minutes – Dry Run -> Production. However it really didn’t feel that way, but then again I may have fallen asleep lol – but they came in over the speaker saying “You’re doing great, keep staying as still as you are, we’ll get you out of here soon” then after a few spins of the machine around me, doors open, lights came on and a nurse tells me “I’m going to give you your tattoos now.” she put on some ink, then a tiny pinch, another, and one more – 3 dots are now on my skin for life! 

Now you have to remember every ounce of this is new to me, some in my head I’ve mapped this out of the stages and I figured “Okay they finalized the map in the dry run, now with the tat’s I’m ready for the big show” so I asked “So now radiation?” they said “Nope, you’re done for the day, go home and rest.” That was done. I was finished!

So on the way home, we stopped by and got the anti-nausea meds, both Chemo & Radiation teams said “I know they told you only as needed, you need them, take them before bed.” and I must say strangely? It helps feeding on the tube. My stomach doesn’t get upset anymore, I was able to do my evening feeding and not feel like I was going to throw up! So win.

Next, I hit the mailbox hoping for a check or two that are a week or two late, but no such luck, but some boxes arrived and my Instagram request was granted – I was gifted a Nintendo Switch! You are all amazing, I’ve also had others offer money, anything I want, got a gift card to Amazon too – just insanely awesome outpouring of love & support to me and my entire family, it’s just flipping awesome.

Now while the nerd in me said “Oooo set it up” I didn’t, most I did was put in on the charger and then I passed out. Daisy and Lilly stayed at her parents for the night so I could not have to worry, try to take care of them, and let me rest – I did, only been up about 3 hours now and going through over 1k in emails, maybe 4 tickets, looking at a performance issue on a server, and ate. Sleep will come again soon!

Today I do my next treatment of radiation – so the journey continues, and every day my prayer is the entire team’s hands are guided by God and I’m expecting amazing miracles!

Thanks for reading and thanks for support & prayers!