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.

Events change things.

I’ve been through a bunch of changes I didn’t ask for during my adult life. Each time my life is altered somehow.

In 2004 I was laid off from a job at the zoo due to a huge $$ mis-handling by those from on high. For the 16 years prior, my plan was to retire from the zoo. My identity was tied to working there, my skill set was minimal because of my dedication to the job. I was ‘forced’ to change who I was and what I was going to be when I grew up. There were plenty of tears during this transition and I was not used to working that hard to get somewhere else. I adapted and found a career I love just as much as the zoo and now can’t imagine doing anything different.

In 2016 we had a house fire. The experience of the actual fire was one part – it showed me I could think on my feet in an emergency. But the re-homing of us and our dogs during the destruction & reconstruction of the house was another part. I developed anxiety like I’ve never experienced. My sense of safety was destroyed, life became scary. Things could change quickly. It took quite a bit of therapy to get my head to stop replaying the day and worrying about what might happen next.

Late 2018 into 2019 I was diagnosed with breast cancer and went through treatment (In the beginning). Once it was over I thought I’d be able to go back to ‘normal’ and continue where I left off. Mentally it took a toll on me more than I thought and I’ve been back in formal therapy ever since. These things were stories I expect to hear about from others… my friend just found out… my neighbor just had… not my own life events.

Now in 2021 this! I joke with a colleague about how I like to spice up my semesters (there was a broken foot in early 2020 to add to the spice) and she mentions how I like to keep things interesting. But this time there is no going back to what life was like before. There is no returning to normal. I am not okay with calling this a new normal, because it’s totally bonkers.

Having a chronic cancer is bizarre. I’ve read a lot of other patient stories, many refer this to a marathon. Supposedly the oldest living NET patient is 92, diagnosed 40 years ago. I keep trying to grab on to their positive thoughts, but these slip through my fingers and I’m back to the panic and fear. I’m sitting and waiting for the scary monster to jump out again.

I am realizing much of this is also mourning, I’m very sad for the loss of who I was, the security I thought I had. There is no going back to life before diagnosis, there is no getting to a new life after treatment.

My marathon has started except with treatments instead of water stations. The finish line won’t be a celebration.

I learned a new word. The closer I get to my upcoming CT scan the more I am feeling this. The scan will be a followup to the original PET scan I had. It will compare the tumors I carry around to what they looked like a couple months ago.

I continue with regular scans for breast cancer, alternating every 6 months between a mammogram and MRI. The MRI is as much a mental challenge as it is physical. It doesn’t hurt other than the IV line for the dye. But being in a tube for 20+ minutes is tough. If I move, they have to start over, I learned this the hard way. I honestly rely on the same mental stamina I’ve practiced in CrossFit (not trying to recruit but…). I can do hard things for 20+ minutes (sometimes the coach pushes me to be faster but usually I’m not).

I’ve gotten used to the anxiety before these scans, and the relief when they tell me everything is normal. The upcoming CT scan feels different. This time I know stuff is in there but the question = what’s it doing now? Did it grow, spread or maybe shrink? Is the medication working or do I have to go to plan B? What is plan B? How bad does barium taste?

Too many unknowns for my liking. I’m not able to just ‘go with the flow’ on this. I can’t just enjoy every moment, live life to the fullest each day, blah blah blah… regular activities & conversations are interrupted with thoughts of ‘what if’. I have not figured out how to get out of this rabbit hole. I am not even sure I’ve reached the bottom of the hole yet.

I’ve struggled with time management most of my adult life – but this diagnosis has upended any efforts I’ve made at keeping on tasks.

I am having a hard time maintaining focus on anything – it’s been difficult to get my classes ready for fall semester. My expectations of what I’d get done over the summer and what actually got done are completely not aligning – there is potential for a hot mess in the first week(s) of classes.

Adding to my focus fallout – my anxiety is increasing I think it’s because I have a follow-up scan next week.

This whole process feels like I’m sitting on a carnival ride I don’t want to be on, but my “friend” convinced me to try it (at this point they are no longer my friend). The freaked out anticipation — what’s going to happen to me, when will it start, how bad will it be, how long will it last?

and… my train of thought derailed…..

I started drafting thoughts for this post a couple weeks ago. This is one of the harder topics for me to put into words.

I feel like I’ve always had an angry side, a quick temper – it can flare up quickly & comes out sideways sometimes. My husband jokes about my potty mouth. And maybe the ONLY benefit to having a mask on during workouts – no one can decipher my workout words.

I am incredibly angry I have to deal with this crap! I feel totally overwhelmed most of the time. And I’m sure this stress is not doing my body any good but I really don’t have another option.

I found resources to learn more about NETs (neuroendocrine tumors) and have joined a couple online support groups with fellow NETs people. The process of understanding this cancer is going to be LONG and confusing.

The more I read the angrier I get. I already have multiple trips to the cancer center & multiple providers to keep records of appointments & treatments. Now I need to find a NETs specialist – none in DE so this is travel, this is more things to squeeze into a schedule.

The more I read the angrier I get. NETs present differently for everyone depending on the number of tumors, location, stage, grade, Ki-67 number… I can’t even use others’ experiences to guesstimate my future. I will need to get a medical degree to understand what I have and a really need an administrative assistant to keep track of when I go where for what.

The more I read the angrier I get. The symptoms of the tumor activity, the side effects of the treatments – all scary. I’m not experiencing them yet, to my knowledge. This will affect me though and I need to be aware of what they are. For example, I now have to worry about carcinoid syndrome & how normal things like dental procedures involving novocaine could trigger it. The sooner I catch a problem the more likely it will be to treat it, so I can’t not know what’s coming.

The more I read the angrier I get. Most of those with NETs are mis-diagnosed and don’t find out for a few years after being incorrectly treated for other things. I have no way to know but my suspicion is the non-ulcer dyspepsia (IBS like issues) I was diagnosed with several years ago probably was this starting up. NETs is unknown enough so most docs don’t even know to consider it.

The more I read the angrier I get. I’ve been told to not read and just wait for doctors to explain things. I don’t see this as an option. I need to know what questions to ask, when to ask, who to ask. But this leaves all the learning up to me.

How will I be remembered?

I started reading the obituaries back in grad school. It was mostly curiosity because at the time I was a dietetic intern and would recognize a name from my time in the hospital. It was interesting to see who they were before I met them.

Around this same time I received a call from one of my two college roommates. I had not heard from her in quite a few years. She was calling to tell me our third roommate had passed away from ovarian cancer and wanted me to hear it from her before I saw a post in the obits. About 2 months prior I had just reconnected with her via email and we were trying to plan to get together. But at that time she wasn’t feeling well and wanted to wait until she felt better. Reading her obit – I was amazed at all she had done since college and I was sad to have missed this chance to see her again.

I have continued to read at least the names of those listed in the obit section. Occasionally something about the person will prompt me to read the whole entry. I find the information people choose to include interesting.

Lately I’ve asked myself – what will mine say? Have I done anything notable? Is a lifetime of picking up 💩 an obit worthy skill? I don’t think I light up a room when ever I walk in. I know my RBF (resting bitch face) has convinced many students I am scary. I can be overly emotional. I’m worried I’ll be remembered as the whiny patient who couldn’t just suck it up and live life to the fullest.

For anyone who might read this, I am not writing this to ask for feedback. I just need to process who I am becoming now and what I’m doing in life. This diagnosis makes me ponder things I didn’t think I’d need to process for many more years.