Apparently I did not read the fine print… I wouldn’t have agreed to these life terms and conditions.

It’s been a while since I sat down to write – there’s always lots of thoughts in my head, several posts are started but not done ‘enough’ to publish. Thoughts & themes overlap & I have a hard time getting them to organize. We’ll see if this one makes it to the page or not.

I’ve been trying to come to terms with the permanence of this condition. Diagnosis was just about 5 years ago but it seems like ages. And yet I can remember the day like it was last week. Despite years of therapy and all these posts it’s still hard to wrap my head around it all.

If you’ve read any of this blog you know the theme… Same Old Blues (song by Phantogram) – “I keep on having this dream – where I’m stuck in a hole and can’t get out – there’s always something pulling me down, down, down – and this is nothing new, it’s just the same old blues…” As my condition continues I spend more time avoiding people now – so I don’t drag them into the sewer of my mood – sorta already mentioned this in ‘Heaping Pile’… I’m always wavering between being real, showing what’s actually going on or hiding it all, so those around me aren’t uncomfortable. The decision tree required for this is growing… who’s asking.. what was the last thing I told them.. what’s new since then & is it worth mentioning or just answering “I’m managing”?

I’ve written about my feelings of being an outsider throughout my life. The chronic part of this condition is compounding the situation. The terms of the medical needs for appointments, treatments and medications affect so much of my life. Symptoms and side effects are limiting me at times & making it harder to do normal stuff. With all this I’m finding myself fitting into less & less of my usual spaces – I’m less available, less useful, less relatable to those around me… I feel like I’m shrinking…

The terms & conditions aren’t going away, I’m stuck with them. I’m trying to figure out where I do fit now.

As time goes on I’m noticing losses piling up…

Ghosted by friends – There are some friends from my past who totally stopped contact. I am also noticing others who are lessening their interactions. It’s hard for me to not internalize the changes in friendships. It feels personal to some extent but I think I get it… Who wants to be uncomfortable while listening to this crap? The story never changes on my end, they’ve heard it before, I repeat the same answers to their inquiries. I’ve started pulling away from interactions, sparing those around me from the muck. I feel alone more and more these days.

Physical ability – most of those I workout with are in our gym for very different reasons – trying to improve, trying to get a good score, trying to reach a new PR. I am there for survival – just trying to maintain some semblance of health, some level of strength, to keep me ready to face the next medical adventure. The camaraderie I once felt there is pretty much non-existent. I don’t have much in common with anyone else. There’s very little of the workout instructions I can use without me needing to figure out appropriate modifications. There’s not much I can discuss with others or compare notes after a workout. Despite any class size I’m really in a class of 1.

Health status – little by little daily life is getting more complicated to manage. The effects of treatment & medication meant to help give me a longer life make things different in my body. There’s an increase in random pains, unexplained discomfort & new ways my body reminds me of my status. It’s becoming harder to know what to eat and what to avoid to keep digestion somewhat normal. I don’t understand what triggers any of these things so I don’t have a way to avoid them. This has started to influence my desire to be social – what if I’m out and have an issue? What if I agree to do something and don’t feel up to it the day of? I’m much more guarded with what I agree to do – this is adding to my loneliness.

Hopes for the future – I’m at an age when friends are retiring. I’ve started thinking about my own time to be done working full-time. But my retirement years will likely be very different than most others I know. I feel more limited now in the options I can consider mostly because (see previous 2 paragraphs). I can’t/won’t make long-term plans that can’t be cancelled or changed. It’s hard to plan for a future when the health status expectations are so variable and unknown. Where I thought I’d be at this age is not where I am now.

Not everything in my life is bad, but this site is where I process what is. This is my reality. I don’t get to ghost myself & pretend nothing is wrong. I don’t get to ‘not’ read these posts. I don’t get the rosy future I thought I’d have. I feel more alone as time goes on.

I play lots of games on my phone while I’m in waiting rooms, usually to avoid noticing I’m waiting yet again. It also helps to avoid making eye contact with all the others in the room. I find it awkward being in place with so many others who are also sick, who are there for treatment or to see a provider. It’s not a comfortable place to wait.

My primary go-to game is a version of solitaire – put the cards in suit order. Moves can either help… or stop the game. Usually I just make moves as I find them available — without looking for consequences of the play. Sometimes I take the time to look ahead and plan a move based on how many new moves it will lead to. Sometimes I ‘undo’ a move if it will let me make a different choice to increase my chances to win. Every once in a while I win… more often I have to start a new game because I ran out of options.

My health situation feels like a solitaire game. In order to continue [playing] I have to make [moves] decisions… It’s hard to look ahead & see if a choice [move] will be a benefit or not… will this next procedure/treatment [move] help the situation [keep me playing] or make things worse? I don’t get to restart this game when I run out of options.

And these procedures/treatments often lead to needing new medications to address side effects from them. The number of daily medications I manage is continuing to grow. All have varying times to take them… to avoid interactions – on an empty stomach – 3x / day spaced out – before meals – with food… ~8 different times each day & 3 of them have to travel with me. My daily question list: What time is it? Did I take this already? Is it too soon to take that?

The daily management required to keep playing takes a toll. Physical side effects interfere with normal activities. Mental stress interferes with normal functions expected of an adult. Managing me is a full-time job now.

Incidentally – I won the game pictured above – but my % winning is only ~39%

Same tree… same

Our house backs up to property with large trees growing behind our fence. This area is not maintained other than removal of fallen trees on the adjacent golf course. We enjoy the buffer and view it provides to our back yard. In the years we’ve been here we’ve had some of their trees trimmed back away from the house and one tree felled into the woods, all to defend our house.

When trees are not doing well they start to produce lots of small branches in lower parts of the trunk – a last ditch effort to survive. This also provides a way for aggressive vines to take advantage and climb the tree. From my side of the fence I try to help get the vines out of the trees but it requires regular attention.

During the last yard cleanup I realized I feel like the tree – doing what I can, trying to survive… so far I am not physically sprouting anything new – luckily. However, I’m starting to realize, like the tree, I’m past the point of ever getting back to normal again. All I do is continuously deal with the recurring and new medical issues. Just hoping my body will hang on to this current normal.

I’m trying to come to terms with this situation, & how it requires constant vigilance – always looking for the next vine trying to take over… physically exhausted… mentally melting.

I am truly grateful for all you do to help me stay alive and maintain as good a quality of life as possible. However – Please understand there is more to this process than what you see from your side. Please know when you order stuff for me I’m thankful you are on top of things but also dreading everything going into the order.

Every test involves multiple steps, not just the test itself:
+ Sometimes there is fasting.. sometimes it’s drinking crappy contrast
+ Almost always there is a needle stick somewhere in one of my arms and it’s up to me to remember which side is ‘next’
+ Most require someone to call and ‘review’ my medical history AGAIN & AGAIN… I even have an official appointment scheduled in one portal for one of these calls which was scheduled by someone else.
+ & tests with anesthesia – whole bunch of added calls beforehand asking about my medical history with anesthesia. These also require a driver who must listen to and relay the results later because I’m not awake enough when the doctor visits after.
+ For some tests the script goes to the location directly from the provider, other times I am given the script and have to remember to bring it.
+ Some tests are scheduled for me, others I have to call and make set up the plans – again, keeping track of all this somehow

Every appointment involves more than just showing up:
+ There are multiple confirmation texts & emails – some are reminders, some ask me to confirm – it’s a bit much
+ Then come texts &/or emails (sometimes both) with links to fill out forms prior to the appointment
+ The number of different portals I have requiring access to access my information is ridiculous
+ Throw in a specialist for a new issue – new appointment – new portal – new forms – new number showing up on my phone!

Every procedure has new and exciting extras to go along with those listed above:
+ A simple ’24-hr’ blood pressure monitoring requires wearing a cuff for 24 hours, having it beep & squeeze my arm every 15 minutes. If I moved during the test it gave an error beep and tried again before the next 15 minute test. Sleeping was “easier” – only every 30 minutes with no beeping? Last words from the person in the office when I left “just act normal and do your usual activities” – my interpretation… having to play freeze tag every 15 minutes is NOT NORMAL.
+ A 24-hour urine catch is just as it sounds – collecting for 24 hours – but keep it chilled (fridge or cooler, which is better, easier, less gross?) You are now stuck in the house for 24 hours, don’t make plans. But plan for this when you can return it first thing – keeping it chilled – there are limited times this works in a schedule – oh and don’t forget you have to find a time to pick up the empty container prior to being housebound.
+ The unplanned, ‘not usual’ side effects of a procedure are another story!
+ Near future radiation treatments will involve 2 visits each time (x4) – #1 – get a PICC line installed (a more internal IV) the day before. #2 being admitted to the hospital for the day to receive treatment and get the PICC removed. Then avoiding everyone for 3 days due to being radioactive = housebound again.

++++++ It is never just a test or specialist or procedure or appointment – this is a lot of time & effort just to stay alive.

If anyone is reading this, feel free to stop here – you’ve read this crap before, no need to waste more of your time. None of this post will be anything new, no new revelations, no new insight into my psyche, no personal growth. Just like a ruminant – I’m regurgitating and re-injesting the same content as before – because this crap won’t go away.

Recent symptoms & test results caused a flurry of more tests, new types of scans and procedures I never thought I’d need – all ordered STAT. The past month has been a whirlwind of CRAP. I’m grateful for my oncologist who stays on top of the issues but FFS why can’t I just be okay? It’s exhausting. And every new ‘experience’ is just another slap in the face to remind me I have cancer.

I’m so angry at how much this is damaging so much of my life. Side effects of the cancer & treatment are starting to take a toll physically & mentally. I keep waiting for things to normalize, to settle and just let me be. I don’t think this will ever be the case again. I am tired of adjusting to new health issues, tired of appointments, tired of scans & tests, tired of the amount of time these consume. I spend my ‘free time’ doing work to catch up for missed time or going to/from medical places.

I am so very tired, so very angry, so very sad. It’s all CRAP! Everything about this sucks. The challenges just keep piling up but I can’t keep up with the s*** shoveling. Too much change happening all at once, my body and mind can’t adapt fast enough. I’m being buried by all the crap and no idea how to get myself out of the pit. I feel lost – disconnected from others – fading away…

I gave my brain a name. This was an idea in a video sent to me. It’s supposed to help with the crappy self-talk I usually default to. She is now who I correct, yell at, plead with…. depending on the situation. “___ shush now so I can get back to sleep” – “___ please tell my GI tract to act normal (what ever that is now)” – “___ FFS stop what ever is causing that pain” – I try to be polite but there are times I yell at her.

She is also in charge of managing the monsters on the bus – which is a huge job. The monsters analogy was explained by my therapist to visualize how my emotions can derail me. I’m the bus driver, they (emotions/monsters) are passengers. These monsters get unruly at times – often actually. She is in charge of making them sit down, shut up and leave me alone to drive.

We are not [yet] a good team.. trying.. but all of this is a huge ask for one brain – as this is on top of trying to manage daily activities and keep my job. The monsters frequently take over – taking turns driving the bus. When they drive it takes everything I have to attempt to control myself. Most of these times I don’t gain control back before crashing. The repair bills are enormous.

The damage to my psyche from crashing is causing rifts in my life. I’m finding it harder to connect with others & becoming more uncomfortable socializing. The more I deal with this f***** cancer… treatments, appointments, side effects.., the less I have in common with those around me. I can’t hide from this and I’m finding it harder to fake it with others – I can’t just say ‘fine’ when asked how things are going. I don’t have control of the bus enough, to avoid crashing, to avoid causing more rifts.

I probably need to name the emotion monsters too – but that’s too many to think of or remember….

Acronyms are now running my life – the latest portal message from my oncologist: “Let’s repeat a CMP this week. If LFTs are not improving, I will order an MRCP to get a better picture of the liver.” Acronyms are all over my chart, all over my lab scripts & procedure orders. In grad school and my dietetic training I learned many of these terms. I don’t use them in my classes now. It’s kinda become a running joke at work — how much clinical nutrition I don’t know anymore.

But I know enough that I worry when labs are not normal. I understand how things work enough to know my liver is pretty critical – for more than just digestion. The issue for me is how much to worry. How much weight should I give to the odd results – are they really odd — or just a fluke? Am I okay with a ‘wait-&-see’ plan?

This cancer causes so many potential issues either by just being there or producing hormones. The treatment I’m on also causes it’s own issues. All of this has made me hyper-focus on every little twinge or odd feeling. When labs are out of whack my anxiety kicks into high gear. What caused the wackiness? How do I fix the numbers? Will they ever be normal again? What new issues will develop from them? I go on and on and on…. in my head with this.

So… the repeated CMP did not show improvement in the LFTs – an MRCP is now scheduled. Yay! – a new procedure to add to my list of experiences!

In the last week I have had to fast twice for appointments. I’ve had 2 medical procedures – one an annual check, the other was followup for an odd CT scan note last month. These were followed by 10 different labs drawn in one sitting (8 tubes of various colors). I made a comment to the tech about the number of tubes and got a “you did this to yourself” response. Yes, yes I did… I chose to lump all my labs together instead of driving in 3 different times and fasting more than one time. I don’t have many options to make this process easier on myself.

Results from the labs are showing an issue that was not an issue a few months ago. I have no idea what this will lead to but I can’t imagine anything less than further testing. I don’t know how I can fit in yet another condition to manage. My medical list is ridiculously long. Appointment management is my second full-time job.

Every time something like this comes up it feels like a slap in the face, another reminder for me… “oh yeah that’s right”. It never leaves my head… just sits quietly… like a jack-in-the-box toy until — “don’t forget – you have cancer”!

I am so scared – scared of what’s to come, scared of whether I will be able to handle it. Will right now be the best I feel? – which isn’t super great but tolerable. How fast will the downhill slide be? When will the hard decisions need to be made?

I am trying so hard – I am doing everything I can to stay alive. I don’t have time do more. I am following all the rules – exercise, diet, 0 alcohol – WHY? Why bother trying anymore? I want to stay around for my family – I will keep working at that goal – but mentally I am toast right now.

Coloring mandala pictures is often suggested as a method of relaxation. I received more than one book from well-meaning friends back when I was recovering from surgery. One interesting observation during this time = coloring is not therapeutic. I do not find coloring relaxing – too many color choices – too many decisions for where to put all those colors – spaces to put the colors are too small to stay in the lines = all around frustrating. I do think they are pretty when they are done.

For much of my adult life I’ve made it a priority to see my PCP regularly. Usually this was just for annual checkups, and I felt kinda silly since there was nothing needing to be addressed. I was happy to do this because I was always told “everything looks good, see you next year”. I now have way more providers involved in my care on a more frequent basis – I miss the olden days.

Now my visits with my PCP are spent joking about the new issue(s) my body has invented to require more attention. In my last visit with her, she stated – our goal is to keep you within the lines. She was referring to my lab values. I’ve mentioned in the past I have lab work done every 4 weeks just before my butt dart. Things have started to shift – more of these numbers are trending toward one or the other end of normal. Several are staying outside the lines.

Because of this shift I currently have 5 separate lab scripts to complete over the next 2-3 months. This is in addition to 3 scripts for various testing and one prep sheet for another test – which have been ordered based on lab values and symptoms. This is a lot of paperwork to track, to remember to bring with me at the right time, and get myself to the correct location.

My new hope is for lab values and test results to be WNL [within normal limits]. Trying to keep my body in the lines is frustrating.