When Things Don't Go According to Plans

Consider this an advance apology for a lengthier post but you’ll find out why at the end.

Weather is an interesting thing huh? Last year it feels like the summer temperatures started in April – it got so warm, so fast – and this year the weather has just been crazy all around. Utah had a winter more similar to the ones I remember growing up with for the first time in years. I personally love the snow so I was alright with it despite not loving the cold as much as the white stuff. I also loved that we actually had spring weather for longer than what has felt like just a few weeks in years past. We took full advantage of it and spent a lot of time going to parks as often as possible since our son loves being outside so much. I’ve also been taking him to story time at the library whenever I’m able which I’m sure he enjoys an extra amount since they do it outside during the summer. Other than trying to enjoy the great outdoors as frequently as time allows things have been pretty typical as far as the day to day stuff goes. Now that the temperature has jumped into the high 80s here suddenly and spending hours outside each day isn’t quite as enjoyable anymore, I figure I should get back to sharing everything. On that note I’ll jump right in where I left off at the end of my last post which was with my second surgery having been scheduled for January 31st, 2023.

The few days between my appointment with Dr S and my surgery went by pretty quickly. I think it helped that I was at least partially excited for surgery since my mass being a lymphangioma seemed to be not too complicated and I was looking forward to no longer being in pain. My husband and I headed into Salt Lake that morning while our son stayed with my parents. I honestly don’t think I recall feeling nervous about the surgery at all this go around. I was just excited to get it done and move on with life you know? The check-in and waiting process went way more smoothly this time than it did with my previous surgery so that was wonderful. I don’t think we had been at the Huntsman hospital for more than a few minutes before they called us back.

A nurse took us to a pre-op room and did all the usual things – made sure I knew what I was having surgery for, briefly went over my previous surgery notes, notes from my appointment with Dr Scaife, etc. Then because it is a teaching hospital after the nurse left a couple of medical students came in to introduce themselves as being part of Dr Scaife’s team. One of them was one who had been present at my appointment just a few days before so seeing a recognizable face was nice. Then one of the surgical nurses came in followed very quickly by the anesthesiologist. He was the last one that needed to do his spiel and things were actually running a bit ahead of time according to him so he told us a bit about himself and then asked us a few questions before jumping into the technical things.

He seemed to be a bit amused with my answer in regards to how I did coming off of anesthesia with my first surgery. Apparently I take a bit longer than usual to first come out of the anesthesia stupor for more than a few seconds. I also told him I still felt way out of it the day after that surgery. He said it was likely due to a couple of things – that they had expected to have done a longer surgery than what actually ended up happening and that it was my first experience with anesthesia. I also mentioned that I didn’t recall leaving the pre-op area or going back to it after my first surgery so he took it upon himself to leave me with some light-hearted memories of the transfer from the pre-op room to the OR this time. When he was wheeling me down the hallway he told me a few jokes and when we got to the OR he asked me a few times before I went under if I could see different people in the room. I remembered all of that as soon as I came off the anesthesia this time so I’d say he did his job very well.

It took me just as long to completely come out of the post-op fog as it did the first time but once I was out of the fog, I immediately felt more with it than I had before. I remember thinking how nice it was to feel like I could focus on things right away. When the nurse took me into the room I’d be staying in for the night she said that Cliff should be in soon and went about doing the tasks of checking my vitals and making sure I was comfortable. Then she left and a time later another nurse came in to check on me and then another…and another…and still no sight of Cliff. I was probably in the room for about an hour or so before he got there after I had asked the 4th nurse if she knew where he was. It turns out that he had received the text saying I was out of surgery but then he hadn’t received any others yet saying that I was in my room or what room I was in. He had just been hanging out in the waiting area probably assuming I was just taking an extra-long time coming off anesthesia this time or something. He got there in the end though so that’s all that matters.

When he did get to the room he asked how I was feeling and then asked almost the exact same question he had after the last surgery – the question being, “Has anyone talked to you about your surgery yet?”. Once again my response was that no one had and once again Cliff gave an astoundingly similar answer to my response as he had just a few weeks before. My surgery went well but Dr S had told him that my mass surprised her in not being a lymphangioma and she hadn’t quite seen a mass like mine before. He followed that quickly with telling me that she had been able to remove most of the mass which was a very comforting thought. Since I actually felt coherent this time I surprised myself a bit with how many questions didn’t come to my mind right away. At the time I attributed it to not knowing exactly what questions to even think but looking back I believe it was more that I just felt at peace.

I don’t recall if I mentioned it in previous posts or not and I’m not willing to take the time to go back and check but before the first surgery I had received a couple of priesthood blessings. In each blessing the word peace was said many times and I remember thinking to myself after receiving those blessings that I could get through whatever might happen if I could trust that God is in control and that He would help me feel peace through the process. In that moment of learning that we still had no concrete answers about anything really, I felt an immediate sense of peace followed shortly by having the thought that I was in good hands with the doctor I had and that she would be able to handle things moving forward.

I spent the rest of the day feeling pretty nauseated, simply how I react to anesthesia apparently, so I wasn’t up to too much. Thankfully Cliff enjoys watching house renovations shows too so that is what we watched to pass most of the time after making a few phone calls to let family know that my surgery had gone well. The next day I didn’t feel nauseated anymore so I was able to eat food for the first time after surgery as I had been on the clear liquid diet up until then. I can be pretty indecisive when it comes to ordering food at restaurants on a normal day but it turns out I am way more indecisive when ordering food when I haven’t eaten for a whole day. It didn’t surprise Cliff at all when I told him it took me about 15 minutes to pick something when he got back from getting food himself. We walked around the floor a few times that morning and afternoon since that along with me no longer being nauseated were Dr S’s main stipulations for discharging me and watched more house-renovations between that and all the nurse check-ins. Dr Scaife’s team of students came in around lunch-time and the resident in charge confirmed what Cliff had already told me – that they still weren’t exactly sure what my mass is – and said Dr S would be in within a few hours to talk with us and get the discharge process finished up at that time.

Dr S came by around 3pm and after asking how I was feeling got right to letting me know what would happen now. She said that my mass would be sent over to the pathology team so they could run tests and such on it so we could figure out what it was. She asked if we had any questions and we may have asked one question maybe but I don’t recall what we asked if we did even ask one question. There really wasn’t much either of us could think to ask before getting the results back from pathology so we made the discharge process pretty easy. We scheduled a follow-up appointment for a little over a week later and then she said she’d let the pharmacist know that I was good to go so they could bring up the medications I needed to take home with me.

The week between surgery and the appointment seemed to both go by quickly and very slowly all at once. Recovery wasn’t too bad overall – just the expected pain around my incisions and being extra tired for the first few days. After a few days I at least felt like I could get out of our reclining couches unassisted without regretting it almost immediately after standing up. By February 9th, the day of my follow-up appointment, I was doing much better and was a little anxious to find out what pathology had found. As I was coming to expect when we got to the hospital we had barely sat down in the waiting area when we were taken back to one of the appointment rooms. I’ve decided that the Huntsman hospital is possibly one of the most time-prompt hospitals which sure beats some of the others we’ve been to where you wait for what feels like forever sometimes.

As per usual in a teaching hospital we met first with a nurse and a couple of medical students who went through the typical recovery questions – how has recovery been so far, do you feel like you need more medication, how do you feel different compared to before surgery, etc. They left saying that Dr S would be in as soon as possible to go over the pathology report. We waited for about 10 minutes before Dr S came in with one of the students with her as well. She asked all of the same questions again and then said, “Well, do you want the good news first or the bad news first?”. Before I could even respond she said she would start with the good news first. The good news was that my mass was benign - there had been some precancerous cells present but not enough for it to be classified as precancerous. The bad news was that there were still a lot of unknowns even after running all of the tests on it. She proceeded to read through the pathology report a couple sentences at a time so she could pause and explain the technical terms in a way we would understand.

My mass was a mucinous cystadenoma with ovarian-type stroma. In very plain terms it was classified as a type of cyst. However, after she read through the report even after explaining a lot along the way she said that while my mass had the most things in common with cysts there were enough abnormalities that it could turn out not to be a cyst. She also explained that with most masses there are cells present that affirm where the mass came from – the liver, the pancreas, ovaries, etc. – but my mass didn’t have those cells present. Another abnormality with my mass was the color of the liquid from inside of it. Typically they would have expected it to be clear or a pale yellow but mine was more like a light pink which indicated blood being present in the liquid. Then the thing that really threw me for a loop was this which is a direct quote from the pathology report – “the retroperitoneal location of this lesion is highly unusual and we are unable to locate any such lesions in known literature”. As Dr S put it my mass is very unique which makes me special. Cliff’s response to that was that we’re not sure that I want to be that kind of special. It gave us a good chuckle which was a nice reprieve after being read a pathology report that still gave us very few answers.

Dr S again asked if we had any questions and our main one was how things would work moving forward. She said that they believed that she had been able to remove enough of it that for a good while it would basically be a balance of her keeping an eye on things as well as me paying close attention to any symptoms I may experience in the future. With so many unknowns about my mass there wasn’t too much she could offer aside from that. So, the game plan at the time was to get multiple CT scans done over the course of a year’s time with the first being done in late March, then a second one about 6 months later, a third around the year mark of my surgery, and then continuing to get a scan done every 6-8 months depending on how things were going. She kept calling the first CT scan I would get my new baseline since they were thinking that my mass had been there for quite some time. She wanted to give my organs and all that enough time to relax back into their normal positions (as my mass had caused a few to have to move out of the way) and said she fully intended to essentially be able to ignore the first CT scan and simply have it as a new point of reference for all future scans.

On the drive home Cliff and I talked about how we both felt considerably calm and surprisingly not way anxious about all of the unknowns. I’m sure knowing so little about what is going on could be very not reassuring but at the time I really was okay not having answers. Meanwhile, in the present day I’m not as okay with not having answers. I had my first CT scan post-surgeries done at the end of March as requested by Dr S and had an appointment with her on April 6th. As is my new expectation in regards to everything mass related the appointment didn’t go as I had hoped. Dr S started things off as she normally does and and then asked how I was feeling – I was feeling great at the time – then almost looked surprised that I said I was feeling great. That probably should have been a clue as to how my scans looked but I didn’t put that together until afterwards.

As luck would have it my mass had already started growing again and was approximately half the size that it had been at the time of resection (removal) just a couple of months later. That of course put another spin on things as they had assumed that with the size my mass had previously been that it had possibly been there for years. Dr S said she was a bit perplexed that it was growing so quickly and after asking if I had any questions asked if I cared much about who she shared my scans and everything else with. I told her I figured that the more eyes that see it the better since that will hopefully eventually lead to answers of some sort and she said I had the right attitude to get through all of this. She then rattled off a list of symptoms she wanted me to be on the watch for with instructions to let her know if any symptoms lasted for any length of time if I was sure said symptoms weren’t simply due to any illnesses I may experience. The appointment ended with her assuring me that she and the other doctors there are pretty good with curve balls and that I was in good hands. Obviously, the original game plan was tossed out the window since my mass was already growing again so soon after surgery. The new immediate game plan was to have another CT scan done a few months later unless I began to experience a lot of consistent pain (or a couple other specific symptoms) before then. Meanwhile, she already had a handful of doctors at other hospitals in mind that she wanted to consult with before my next appointment with her. That brings us to the present day. It has now been a few months and I just went in for another CT scan a few days ago and my next appointment with Dr S is coming up very soon.

Thankfully, I didn’t start to experience many symptoms of note aside from some ups and downs energy wise right away. For most of April I felt pretty great still then towards the middle of May I started to notice some bouts of multiple low-energy days in a row. Beginning about a month ago I started experiencing a bit of pain in my lower abdomen off and on – usually when I had gotten up and down a lot in a short amount of time. Currently, the pain is more persistent all across my lower abdomen. I’ve had a bit of nausea and other digestive problems. The weirdest thing that has happened so far in regards to symptoms recently is how dizzy/lightheaded I got super suddenly when we were on a hike the weekend of Memorial Day. The hike wasn’t a very hard one and there isn’t much of an elevation gain either so I feel like it came out of nowhere. One second, I felt absolutely fine and the next thing I knew it felt like the world was spinning and my vision went blurry. It was bad enough that I had to sit down on the ground for 5 minutes or so. When I thought I was doing better we began the hike back. We didn’t get very far at all before I had to stop and sit down for even longer because I got dizzy and lightheaded again. After determining that I had been drinking plenty and thinking of all the previous hikes I’ve done that are much harder with higher elevation changes I decided that it must be because of my mass. I’ve had a few much smaller dizzy spells since then but none that come close to what I experienced that day.

Just within the last few days I have noticed that I’m beginning to feel some pain moving up my right side – before it has all been in my lower abdomen – and I’m just achy all over most of the time. For the last couple of weeks I’ve experienced a significant loss of appetite which has resulted in me eating even more slowly than I already did before having a toddler who previously made me want to eat more quickly. I’ve also definitely had some extremely low energy days as well as some very recent chest pain and even a little shortness of breath. I’m sure it doesn’t help that I’ve had a persistent cough for almost a week now. It’s not a very deep cough – hallelujah – but it stills feels like I notice it everywhere every time I cough. I’m hoping that my cough is simply due to having allergies but who knows. With how many symptoms my mass could be causing I won’t even try to guess which ones actually pertain to it versus stemming from other things.

I’m definitely feeling more anxious going in to this appointment than any of my previous ones. It could simply be because I am noticing more symptoms which in turn could be simply because I am aware of my mass and know the symptoms to watch for. Or, it may be that I’m worried there could be something more this time because I’m feeling more symptoms all around. I’d be perfectly happy if my anxiousness doesn’t amount to much of anything but I’m also prepared for the possibility that there could be more unexpected twists in this journey I find myself on.

We are officially all caught up to my current state of being. Through all of this I’m learning to have a lot of patience with myself. As of late, it seems that almost every time I go to bed at night with a plan to do more than basic household chores the next day I almost assuredly wake up not feeling great or have a terrible night’s sleep because I can’t quite get comfortable. There have been multiple days where I don’t even feel up to doing the basic household things. So, at the moment I have a neverending list going on in my mind. On those days I’ve learned to allow myself some grace and remind myself that all of those projects will always be there and that one day they will get completed.

One thing I have tried to take advantage of is being able to slow down and truly enjoy all the small and simple things day to day. I’ve been trying to be more intentional with how I spend my time and have dearly loved being able to devote more time to playing with and interacting with my son. It always surprises me how he seems to understand and simply go along with how I feel on the days I don’t feel like doing much. On those days he always seems to be that much more content with reading books and playing with me on the couch versus being chased around and being played with on the floor. I definitely count that as being a big blessing at this time. I have no doubt that God sent us such an overall easy-going and go with the flow type of child because he knew that we would need that. I’m beginning to realize that because I have faith that everything will work out that I’m able to find peace and comfort very quickly when things don’t go to plan. God is good and I have continued to see miracles and glimpses of His hand in my life and I know that I will see Him more in the days to come.

I’ve always loved quotes so here are a couple that have made me pause and think lately.

“I know you have the faith to be healed, but do you have the faith not to be healed? Having faith is not necessarily know that He would heal me, but that He could heal me.”

*David A. Bednar

“We wait for the rains to cease, the clouds to part, and the sun to shine before saying life is good. Ironically, it is because we endure the storms that life seems so wonderfully bright at their passing.”

*Richelle E. Goodrich

I have full faith and confidence that everything can work out but I’m also trying my best to trust in what God already knows understanding that He will be there with and for me every step of the way. I also believe that the challenges of life are what will help us grow stronger, more resilient, and remind us that the light will always return at the end of each storm. I’ll sign off here and will post again when I have more information.