I’ve come to a point in this process where this is likely as good as I can expect my health to be — it will only decline from here. I’m doing as much as I can to keep the downhill speed as slow as possible. But the issues are piling up so the momentum is picking up.

The biggest issue is the frequency of ER/Hospital admittances, which has been often enough this year to force my eating habits to change. I can no longer physically handle many of my favorite foods & my options when eating out are now very limited. Eating is frustrating, it’s a chore to figure out what I can tolerate and how to avoid what isn’t okay. There are many foods I used to eat regularly… I won’t even consider now. All of this is tiresome to explain to others & oftentimes I don’t want anyone else to alter what they are doing for my sake. I don’t want others planning an event to worry if I can eat anything. I don’t want to be obvious when I’m out to eat with friends, so I look at menus before we go. I feel like I have very little room to make a choice on the spot. There is no easy fix for this without taking a big risk of making things worse instead.

Next up: several of my monthly lab values have been showing a persistent issue needing attention. Without change it could damage an important internal organ, but…again, there is no easy fix. The options I have for dealing with it range between an adjustment in the current method of care – which will likely cause an increase in regular discomfort I have now & may not be enough – up to a more helpful option which will severely decrease my quality of life as I know it.

Neither situation is likely to improve, only decline as time goes on. So right now this is the best I get to feel. Physically I don’t feel horrible, just blah. People still see the usual day-to-day me. At this point I don’t know how to answer the question “how are you doing” from anyone – family, friends, doctors… My recent go-to response: “that’s a loaded question”… other options: “I’m still here”… “upright and breathing”. It’s never meant to be a brush-off, but how much do I explain, how do I give updates without TMI?

It’s maddening! I’m very sad when I think about how just these 2 issues have completely altered my outlook on my future. And more than once these issues have made me realize how afraid I am of the quality of life decisions I will likely face. I’m scared to find out what’s next. F^^^ cancer!

I’ve always prided myself on having a strong work ethic. I’ve always done more than my job requires. As a zookeeper I got involved with extra projects besides just doing my job duties. While I couldn’t be paid extra for them, they did allow me to travel to other zoos for new experiences. I enjoyed the mental challenge of these activities because the job alone was very physical and monotonous at times. My interest in nutrition stemmed from one such experience and drove me to apply for my last position before leaving the zoo. My leaving was not my choice & forced me to find another way to survive, with little to no transferrable skills other than moving to another zoo.

Within 2 months of being laid off from the zoo, I was accepted into grad school. As a grad student, I put in extra work to achieve a 4.0 while completing 46 credits, when I only needed 32 [the long story would make this make more sense but bore you to read]. I completed both my MS degree while also finishing the required undergraduate credits to move on & become a Registered Dietitian. I essentially had to figure out how to finish both programs on my own, there was very little advisement, but I had to be successful to survive.

I’ve been in my current job for ~1/2 of my working career now. Back then, I never thought I would find a job I liked as much as the zoo – but I did. During this 2nd part of my career I’ve also experienced quite a bit of personal drama. Some of this has been mentioned before but not in this context: my work ethic remained strong during each event.

Our house fire occurred on the day I had a scheduled exam for my students. It was more than an hourly class exam – it was a national food safety exam they had been preparing for for several weeks. I could not find another certified proctor to cover the exam so I showed up. Despite all the tragedy I had experienced earlier in the day and having no clothes of my own, I went in for them. I did not tell them the situation, I needed them to be focused on the exam – they all passed! I kept up with work while we moved 3 times and managed the details of the home repairs.

My breast cancer diagnosis – on Christmas Eve 2 years later. Conveniently the surgery and recovery were during our winter session when I don’t teach. But I had to undergo 4+ weeks of daily radiation. So every morning I drove to the hospital for treatment before heading to campus. I continued to work as I always have done.

My 2nd cancer & current situation has been going on for 5 years. Most of my experiences are here in various blog posts already. For this whole time I’ve put a lot of effort in planning medical needs around my work responsibilities. Much of my ‘free’ time is spent going to/from appointments for one thing or another – it’s my “2nd job”. In all this time, very few classes have needed to be cancelled. I show up for work the days after being released from the hospital. I’ve done work from my hospital bed. I continue to work even on days I don’t physically feel well.

This year, my annual appraisal scores were below the department averages. Despite all my effort in keeping up with work while dealing with my health needs.. it’s now not enough. I was offered options to increase my scores for next year – I have no idea how I’d fit them into my current life. So now I’m faced with do I do more – or – does it really matter anymore? Why should I bother trying this hard to keep up?

New plan… bare minimum to get a paycheck and move on? It goes against my work ethic but it’s probably all I can do to survive.

In a previous post [Compliance] I relayed my experience during my most recent hospital stay. Another part of it I’ve been pondering quite a bit lately – the difference between seeing the big picture vs. only seeing a snippet of an experience.

E.g. #1 – My hospital roommate had been in the room for several days before I arrived. The nursing staff seemed to be familiar with her issues & personality. I never formally interacted with her but I was in the room pretty much all the time – to hear all the various conversations with staff &/or family. I got to ‘see’ a bigger picture of her experience compared to any family or even staff. It was interesting to hear the different methods nurses used to interact with her. They all varied in what they chose to relay to the next person at shift change. Most of the details passed on were snippets – their own interactions. And what she told her family at visits was not always what had actually transpired. They too only saw the snippets. Usually I found it comical, other times I was soooooo tempted to speak up from the other side of the curtain.

E.g. #2 – At work, a search committee was tasked with identifying our next colleague hire. It’s a formal process dictated by HR, totally get it. I was not on the committee but I interacted with each of the candidates. I attended each of their presentations and was part of a group taking each candidate to dinner. For me, these were snippets of a candidate, not the big picture. Opinions of our interactions were asked in a followup survey – I’m not sure what I experienced is representative of the person or the “real” big picture. I’m not sure my opinion was helpful or necessary.

E.g.#3 – This big picture vs. snippet is also playing out in my cancer journey. In general it’s really hard to for me to grasp everything, which is why I write it here. But I’m the only one who is ‘experiencing everything’ – big picture. I have 7+ separate providers now – added a new one during my hospital stay – all following me for the cancer. Each of these have a different focus on my care – each is a snippet of the big picture. I am the one who has to keep it all straight, relay information, remind each of past events or new plans.

In day-to-day life I keep a lot of the experience to myself = very few around me get anywhere near the big picture. I can’t keep track of who knows what or what was the last snippet I relayed to someone. Most people only know snippets based on what they asked me. The big picture is a lot to digest – I get it. It’s why I keep most of the details to myself even when asked. I don’t want to burden others with all the symptoms my body is experiencing or with the mental gymnastics that go along with this diagnosis. For now I’ll continue to keep the snippets snippy and the big picture in my head.

A 5-year anniversary traditionally celebrates with wood, representing durable roots and growth. Today is my 5-year cancerversary. Today I get to see our tree [wood] blooming for another year.

These last 5 years have been a whirlwind of chaos. Including the original surgery I have been hospitalized 5 times for multi-night stays. I’ve received 62 butt darts to date. I now have over 10 separate providers, most of which are directly or indirectly managing cancer outcomes. Since the beginning of 2025 (1.25 years) I have had only 17 weeks with no medical appointment, test, or procedure. Many weeks there are at least 2 travels to an office, sometimes up to 4. The number of IVs, blood draws, scans, tests are way too numerous for accurate counting.

Observations I’ve made throughout this experience: I wish I had collected all the ID bracelets I acquired – I could’ve made a nice chain to decorate our home. I still can’t figure out how to put a hospital gown together and then keep it on correctly. I’m not sure why but I think they purposely make them ugly and uncomfortable. I’ve been moved all around the main hospital building many, many times but still get lost if I don’t follow signs. There are lots of different rooms and waiting required for any outpatient procedure – waiting room, prep room, recovery room, discharge room.

I keep waiting to fall into a new ‘normal’ and just settle into maintaining myself. Every time a new medical event occurs, I tell myself “Just recover from this and then go back to the ‘usual’..” Given the above, I am now grappling with the fact I will have to just keep adapting to ‘okay – this is what we are doing now’. I don’t think I get a normal other than my normal will be continued chaos.

My automatic response to any traumatic event – head down – do whatever is needed to get through – then fall apart after the fact…when I mentally process what the H*** just happened. I’m currently processing trauma from 2 weeks ago. This experience was as much a mental challenge as it was to deal with the physical issues. I’ve been trying to write this post for well over a week, it’s not coming out the way I envisioned while I was in the hospital pondering my experience. The stay itself was “relatively” uneventful – luckily – but the mental trauma was sneaky – subtle damage.

It all started with an ER visit which led to 5 nights in the hospital – I knew once I walked into the ER with my complaint I wasn’t getting out any time soon – I’ve been there many times before. The frustrating part is I have no clear reason for the recurrence, no way to guarantee this won’t happen again. And now – any GI discomfort triggers panic – do I need to go back or can I walk it off?

The first assault [a harsh word but that’s what it felt like] was needing to have a nasogastric (NG) tube placed. I knew it was coming – it’s the main reason I waited as long as possible – hoping to avoid going to the ER. I’ve already experienced the discomfort of an NG tube 3 times, this was #4. I spent the hours in the ER waiting room mentally preparing for it. The procedure to get a tube go from your nose & make it to your stomach is bizarre. This time I didn’t fight it, I knew it would be easier if I just complied. It was weird to be complimented by my nurses for making it easy.

Next up – my body became a pin cushion – IV in one arm, the other arm was used for daily 5AM blood draws – eventually they had to use my hand – my arm spit out a needle? My belly was used for a daily dose of blood thinner – I still have bruising from these shots. I’m experienced enough in needle pricks to know there is no way to avoid the pain, just sit still & comply.

For the majority of my stay I was stuck to my bed with the IV pole plugged into the wall on one side, the NG tube suction on the other side. Any movement from the bed required a call button & being unhooked from the wall by the very busy nurses. These connections also limited my sleep, no tossing or turning allowed – there was only one sleeping position possible. All of this was necessary… so comply… no complaining or fighting the situation.

Days and nights pretty much ran together – the time on the clock had little meaning – every day was the same as the last. I knew day vs. night as I had the window bed ~ with a really horrible view. Family & friends visited daily & I’m grateful for those visits but – always a but – I imagine hanging around watching me sit in a bed is quite boring.

Multiple doctors, nurses, techs… came in at ALL different hours of the day & night – a steady stream of checking my progress &/or needing to complete a procedure. The roommate situation added to the visit schedule – not all who disrupted the room were there for me. The expectation of patients getting rest to get better is extremely unrealistic.

In addition to the physical benefits from my stay, I also gained mental understanding: my involvement was determined by the will of my “team” – there was no use fighting what was “needed”. Once I entered the establishment my journey was directed by the plans & actions of others. I’m aware I could just refuse care and walk out at any time, but that was more risky than complying.

Probably the hardest part for me: I missed out on 5 days of my life, 5 days of normal. I missed planned events with family & friends… needed others to alter their plans to accommodate my situation, decisions were made without my input, got behind in work… just to spend my time sitting in a bed. I’m angry at my body. I’m sad to be so needy. I’m worried about what is next – there is a really good chance of more trouble in the future… the nature of this beast. I got lucky this time – I avoided needing any further intervention – will I be lucky the next time?

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.