I get bored with some things pretty easily. — I change my hairstyle on a somewhat regular basis. Luckily I’ve been with a great hair stylist for over 25 years & he’s always up for trying something new. — One of the best parts (IMO)of CrossFit is the wide variety of workouts & there’s always something to improve or practice. I have not been bored with workouts in the last 4 years. I did find many of the other forms of exercise I’ve done in the past a bit too repetitive after a period of time. — Even with my former job as a zookeeper, the routine of the day eventually soured me on the job itself. As much as I loved working with animals, it lost its appeal.

Then there are the other times I am mad at interruptions = forced changes. I have been eating the same thing for breakfast for many years. I’m not even sure how I started with this, but it’s what I like better than other options. After our house fire we were re-homed in a townhouse while our real house underwent renovations. We had sufficient but minimal cooking equipment in that kitchen, but wasn’t enough for me to make my breakfast. {yes, I realize this is a super minor problem in the grand scheme of life.} This was when I realized how much I liked my usual breakfast and for those months I had to tolerate other things.

For both cancer surgeries and my broken foot I’ve had to change my routines at home and the gym. Each situation was different but had similar frustrations. Normal routines like showering, cooking, my ability to help with dog care, and even driving were disrupted. Activities of daily living (ADL) were much harder or not possible. Now I try to remember those times just to appreciate being able to move and do normal things… simple things… like walking to campus for work or the gym.

But… always a but… now I’m super scared of the changes & interruptions to come because of my NETs or treatment. I’ve mentioned before how much I rely on my workouts, not only to maintain my strength and health but mentally I need the distraction. It forces me to only think about surviving the WOD. I can forget about everything else while I’m in the gym.

One of my many medications (don’t remember which one) can cause joint pain. Supposedly this is just pain, not deterioration, so I’ve been pushing through ongoing shoulder pain for a couple weeks. For the last week+ I’ve been having elbow and knee pains too. It’s rare to move my arms without flinching first. I’ve avoided mentioning this to almost everyone because then it’s real. I’ve been using the open gym time for extended warmups help get through the WODs. Another medication can cause heart issues by thickening walls. No idea what this would feel like if it happens, my hope is to avoid it by keeping in shape. And I won’t rehash here what I’d face with tumor growth.

I’m not sure if it’s possible to avoid these things or if they are inevitable. Will these be interruptions or forced changes? Every new ache, new body sensation causes angst because if something goes wrong again, what do I do? It’s hard to get this out of my head when I experience any discomfort. When it happens during a workout – my time to forget things – $*** hits the fan in my brain. My coping skills at these times need work, I’ll leave it at that.

How will I deal with being ‘kicked out’ of the normal gym routine again? Our coach: “as long as you come back more times than you get kicked out, you’re good”. Will it be possible to come back next time?

Going concern assumption = a business is expected to function as if it will continue to operate indefinitely. It should be able to remain active without the need to close and sell everything. The business owner determines whether the business is able to continue in the foreseeable future. This affects the accounting methods used by the business. I (very) briefly cover this idea in one lecture of one class.

For some reason this concept came to mind during my appointment with the NET specialist. First – what I heard from the NET specialist:

• The monthly shots are doing what is hoped for, they are keeping the tumors from growing.  What I learned is this medication typically only works for a year or two before a new treatment is needed. That will be determined by the activity seen in the scans. I could be lucky and have the medication work longer than the norm.
• There are other treatments available, but not yet, since the shots are working.  They will probably have more side effects.  Some of these may require treatment at a different facility, if my current oncologist doesn’t provide it. At least I have options?
• I am not a candidate for clinical trials due to my ‘recent’ breast cancer.  I might be in a couple more years, further out from that first cancer.
• The tumors they watch on the scans are only the places where they are large enough to show up. There are other spots not big enough to pick up the contrast, seen at the time of surgery.  She mentioned these as being a potential problem.  The extent and location of these could be what cause issues in my GI tract at some point.
• The outlook for my future is not as rosy as I was thinking.  I was planning on a few decades but it sounded to me like that is unlikely based on norms.  Nothing is imminent but this will continue to progress, the goal is to keep it as slow as possible.  I am really hoping my abnormalness is an asset here.
• For now I plan to stay with my current oncologist and only plan to see the NET specialist as needed. 

So now what? I didn’t ask directly how much time I have left – even with her expertise this form of cancer is so hard to predict. I also didn’t really want to hear an answer. But I did ask about how safe is it to make plans for the future, like trips. She said go ahead and plan, and have a backup plan for making cancellations, but don’t stop planning things.

This triggered the going concern principle idea in my head. Before this surgery and diagnosis, I was all in for continuing with life ‘indefinitely’ (or at least lots and lots more years). That idea is no longer valid but I need to find a way to expect to keep going, whether or not I do. I need to figure out how to get past the fear of what’s to come. I am terrified of what may come my way because of the disease progression. I am sad and scared for so many reasons. Right now I am doing all I can to remain as healthy as I can. It’s more of a preemptive strike but that’s all I have to hang on to.

FYI – NETs (neuroendocrine tumors) information:

• NETs are an uncommon cancer type forming in neuroendocrine cells. These cells are part of many organs (e.g. GI tract, liver, lungs, ovaries…to name a few) and carry messages from the nervous system to the endocrine system. The endocrine system controls body functions by making and releasing hormones in response to these signals. (This has been your brief anatomy & physiology lesson)
• Over 90% of NETs patients are mis-diagnosed and treated for incorrect diseases, usually things like Irritable Bowel Syndrome (IBS), Crohn’s Disease, gastritis or anxiety (like me!)
• Correct diagnosis can take up to 5 years from the time symptoms start (like me!)
• Many physicians are not aware of NETs or treat them as benign and unable to metastasize. Over 50% of patients have metastasis = spreading at diagnosis (like me!)

My struggle to keep up feels overwhelming a lot now. The usual work:life balance is harder to manage with the life side needing so much more attention. I’ve never been the best at time management, especially for work things. This semester I amy trying to stay ahead of things for work… just in case. But I find myself having a harder time staying focused enough to get work completed. I’m even having an issue just getting these thoughts out now.

In the life side of the balance, I still need to do the usual stuff (e.g. exercise, eat, shower, laundry, yard work, dog walks….) But this cancer has forced me to add keeping up with multiple medical appointments in my spare time. I now have 4 different portals from providers to manage. I get oodles of texts about upcoming my appointments. Just from the lab for my monthly blood draw I get 4 separate texts when I schedule a time to come in. Why 4? Then there are the emails with notifications about updates to a portal. And the bazillion pre-check emails or texts for each visit to make sure I don’t have covid symptoms.

In the next 3 months I have 2 screenings, 3 medical provider appointments and 2 shots in my already in my calendar. What has yet to be scheduled are at least 2 shots and another visit with the oncologist to review one of the screenings. Oh and there is a dentist visit in the mix I forgot about. AND also the paperwork or online forms – This is what kept me dragging my foot in the search for a NET specialist. I didn’t want to deal with the paperwork and scheduling yet another appointment with yet another doctor.

There are frequent deer visits in the woods behind our house. With the leaves coming off the trees, I can see them more easily. Recently there was a lone deer with a gimpy back leg. My first thought – call the vet – [then she realized she wasn’t at the zoo and no vet to help]. My next thought was how much I felt like the deer. Physically I’m not 100%, I have issues now and likely potential issues at some point in the future. The deer has no choice, deal with the leg as best she can until she can’t. She just made her way through the woods. She can choose the direction to walk but still has to deal with the leg. I don’t get a choice either. I will likely have options with what direction to take the treatment. But like her I just keep trying to keep up.

.

So far my recoveries from surgeries have not had any huge complications. This most recent surgery in April took the longest to get back to what feels like normal – not really normal but the closest to what it was like before surgery. My rehab was just making my way back to the gym and slowly getting back into regular workouts. Sometimes my head didn’t have the patience my body needed. But the threat of getting hurt by progressing too fast was enough to keep me in check. The thought of developing a hernia and needing another surgery was my biggest fear. I absolutely dread being a patient in the hospital again.

It feels like my entire life now is a prehab situation. Everything I do is in preparation for the next event. I’ve mentioned how important physical activity is in my opinion. My primary reason for doing any exercise used to be getting strong and kinda sorta toned. Now it has turned into a need to be ready to recover again, or deal with side effects of the cancer or treatments.

I don’t have any idea what being ready actually means. It’s not reaching a particular goal of a weight I can lift or how fast I can row. But this need to be strong enough to recover or survive has started to take away my joy of working out. It also causes me more stress when I am temporarily injured. I tweaked my shoulder last week and I’ve been altering movements and whole workouts all week to give it time to heal. Mentally this has resulted in more anxiety because how am I supposed to keep up with getting ready? My plan to not get injured is not working.

I am trying to figure out how to bring the enjoyment back into my workouts. But the prehab thoughts still dominate my headspace. I feel like it’s just a matter of time… not if… but when.

I started my adulting as a zookeeper after college. It was a great gig for an introvert who loved animals. I loved the job and the people I worked with while I was there. I planned to retire from the zoo. But best laid plans… I ended up getting laid off from zoo after 16 years because those above me couldn’t manage money properly.

This forced me into a career change – but with no transferable skills. I had dug myself into a hole. So I did what I needed to do for my future career. Within 2 months I was accepted into the grad program at UD. And after 5 years of blood (not really – just being dramatic here), sweat & tears (lots of them), I found myself with a new path and more potential doors to use. Now I am in a job I love just as much, if not more than the zoo.

While the decision to leave the zoo was not mine to make, the direction of my life was. I could have chosen an easier path or settled for the first job I could get with no skills. I’ve always been proud of how I handled this transition.

Since my surgery and diagnosis I have received a lot of compliments on how well I am handling this situation. Many of them are similar to what I heard during my career switch… doing a great job… you are so strong… so proud of you… impressed by how you’re dealing with all this. I appreciate these thoughts and I know they are coming from a good place. I don’t want to sound ungrateful for the support but…

The thing is, this is completely different for me. This time it’s not that I’m doing what I want, it’s what I need, it’s not a choice. I don’t feel like a beast, warrior, or fighter. I’m scared s***less all the time. I am only doing what I can to protect myself. I am working hard to get in the best physical shape I can – knowing I will likely need to rely on my strength yet again at some point in the future. I don’t really feel like going to get monthly blood work or my butt dart medication, but I have to. I don’t want to need my therapist as much as I do (this is also protection for those in close proximity to me). I don’t want to go through the process to find a NETs specialist, but it is another step in this crazy new existence.

This is not a battle with cancer, battles are choices with a winner & loser. This is just my best attempt to stay alive for a while longer. This is just me in survival mode.

Grateful For Therapy!

I’ve been in & out of some type of therapy for most of my adult life.

Today marks 5 years since our house fire. I’ve briefly mentioned this here before but it was a traumatic day for all 3 of us. We (my husband and son) made it out safely and our two dogs too, but we lost our 3 cats. For days after I could not stop crying, I’d randomly just break down throughout the days. We were well taken care of by our families, friends and the insurance company, the one bright side. We stayed at my parents for 3 weeks before moving to a townhouse until our house was renovated.

During this time I developed an issue with anxiety I had not experienced before. Going out anywhere was scary, I was only okay at home with my boys. I ended up back in therapy to work through all of it.

After my breast cancer diagnosis and surgery, I put my head down and just did what I was told by the doctors for my treatment. For those few months I didn’t give my situation any thought. I showed up for radiation then went on to work for the day. It was a routine and manageable for that time. Once I was done I started to process what had happened and the anxiety returned. I have been working with a wonderful therapist at HGCC since then.

This time of year has started to bring not so pleasant feelings up. I was never a fan of fall and strongly dislike winter weather. Now the chill reminds me of needing to turn on the heater, the cause of the fire. The winter is also when I had the surgery for breast cancer, then a broken foot the following year. This past winter, into spring was all the testing leading up to surgery for where my NETs were discovered. With this diagnosis I told my therapist I am her job security.

The anxiety creeps in and so many things are potential triggers. I’m just now realizing how insidious this is in my life. The GI pain I had last week started me worrying about the possibility of my condition getting worse. I didn’t realize until today how extreme my fear is for the likelihood of needing further surgery or more intensive treatment in the future. The approaching of today’s date reminded me of our past trauma. All of this set my anxiety level to 11.

When this happens it’s almost like I can’t see straight in a sense. Everything about my life becomes distorted to a negative skew. I have a hard time expressing what’s going on to anyone else other than to say my anxiety is kicking in. I find it difficult to have normal conversations with friends or even family. My reaction to this is usually to cry for no apparent reason or just shut myself away from everyone.

Therapy has been helping me see these patterns and identify the core issues, instead of me just harping on anything I can think of to be negative about. I don’t see an end in sight for my therapy need. I still feel anxious, scared and super mad quite often. But I am grateful I have such a wonderful therapist. And also for the friends who stick around even when I am talking nonsense. I have an amazing husband who willingly puts up with all this and remains my strongest support.

This is the longest stretch I’ve had between psych appointments in quite a while. When we scheduled our next session I was curious how I’d handle it. I recently looked at my calendar and counted the weeks since my last visit. That’s when I noticed the lack of extreme anxiety. For the past couple of weeks I’ve been feeling a bit calmer than normal. Not like the past past calm but better than the recent past. I’m thinking there are a few things involved here.

There have been fewer trips to HGCC recently. I have only needed to go for my monthly blood draw & butt dart. These can be scheduled on the same day but initially I wasn’t doing this. I was going in a few days early for the lab work and then seeing my oncologist before each shot. If I had a few days between the labs and my appointment she would be able to see the results. Because appointments to see my oncologist have become less frequent and my works schedule is busier for the semester, I combined the two for a single visit this past month. So reminders of whats going on have been occurring less frequently.

I had a follow up CT scan about a month ago to compare tumors from the initial PET scan 3+ months before. I was told nothing grew, nothing spread! My oncologist also felt my blood work trends were encouraging. I breathed a sigh of relief when I heard these results.

Lately I’ve been feeling stronger in my workouts. I’m mostly back to what I could do before my surgery in April. It’s taken a while longer than I thought. But it’s nice to not feel so broken all the time. Now I’m only broken at the end of a week of WODs 🥵.

But I feel like I’m always looking over my shoulder. I am still very afraid of my future. Any time I’m reminded of the potential future medical issues I panic.

Recently I had a bout of my ‘IBS-like’ symptoms in the middle of the night. I haven’t discussed this here, yet. I’ve been dealing with this for several years. Based on experiences from other NETs people, I honestly feel like this issue was actually the NETs beginning. The pain can be unbearable when it occurs. I can’t do anything but pace slowly until the medicine kicks in, which helps but also messes with my GI tract in other ways.

I had thought I wouldn’t have to deal with this anymore because of the surgery and the monthly shot medication. Mentally I really struggled with it this time, just as much as the physical discomfort. Either – 1) the two issues (IBS & NETs) are not connected and I will continue to need to carry my ‘just in case’ meds with me at all times. Any time I have pains I won’t know which is causing it. 2) they are connected and this was a hint for what’s coming.

Either way I don’t win.

When I was young I enjoyed looking at maps as we traveled. I liked connecting the road we were on to where we were on a map. Looking ahead for the next crossroad or landmark and seeing how long it took to get there. Plus it gave me something to do on long car rides with my annoying little sisters (kidding).

Back in the day… when I first learned to drive, there was no GPS help available. I had to write down or print out instructions and glance at them as I drove to an unfamiliar place. I tried to memorize as much as possible before I left. Trying to find your place in the list of roads & turns mid-drive was never easy. But I feel like all of this gave me an awareness of how places are connected and a sense of direction.

I was recently traveling to a friend’s house, but I had never been there before. I plugged in my phone and put her address in the map program I use. I briefly looked at the map before I left and kinda had a sense of where I was going. But that sense was lost once I turned onto the first of many side roads. I also have to point out I couldn’t really see the map on my radio screen without my reading glasses, which I can’t use while driving. So I all I could do was just drive until the phone gave me the next turn instructions.

This made me think about how my life has changed. I used to have an idea of the direction I was heading. I had a sense of where I was and where I was going. There were roadblocks and detours here and there, but overall it made sense. Now I feel like I am living with GPS-like instructions being randomly shouted at me — “get a scan, take this medication, get lab work completed, okay now another scan” but I have no sense of where I am. I just follow the directions but I have no idea where they are leading me, or where the end of the trip will be.

I’m not usually this insightful. I don’t often make these random connections but this one has stuck with me for the last few days so I thought I’d write it down

I know this process is not linear – my mental state will not just continually improve with therapy. It would be nice to have a clear end to my need for therapy – getting myself to be happy all the time! Setbacks are expected but the 1 step forward // 2 steps back routine is exhausting.

I’m not sure how to react to good news – a recent follow up scan showed no growth of the current tumors and no spreading to new locations. And the bloodwork results my oncologist had access to were good, she was encouraged by what she was seeing in my chart. I thought I would be elated with this news. BUT… my brain likes to mess with me.

My focus turned to the side effects of meds I am taking like my increase in body weight, occasional GI pains & digestion issues and hot flashes (ugh). Then there was an oddly high blood pressure reading, and the increase in the one blood value she didn’t see before the appointment. Instead of the encouraging news I find myself dwelling on these things, and how this disease will continue to be a challenge to deal with.

The anxiety does not seem to let up even with good news. I don’t want to be the party pooper who is always on the verge of tears. I have not figured out how to get out of this mindset.