Patient in waiting...

Rambling – (of writing or speech) lengthy and confused or inconsequential

- (of building or path) spreading or winding irregularly in various directions

Anomaly – something that deviates from what is standard, normal, or expected

The Rambling Anomaly – me, the person writing this blog, whose thoughts regularly seem to be scattered all over the place. This past week I feel like my thoughts have been everywhere and nowhere all at the same time as I am trying not to focus too much on my anomaly of a cyst. My mass could indeed turn out to be a cyst when all is said and done but as of now there are enough oddities and unexpected qualities of it that it could end up being an entirely different type of a mass. It’s a definite balancing game of trusting that the doctors and others who have seen my scans and results will be able to come up with some answers all while trying to keep myself more on the realistic side of the scale so if answers don’t come right away, I’m not too disappointed. I am just grateful that I believe in a loving God who sees all the pieces of the puzzle and knows exactly how everything will work out. I have already seen a lot of miracles and blessings along the way so I fully expect to continue seeing them moving forward. That being said, placing hope and faith in something and then having it not go the way you were expecting it to at all kind of sucks. And that’s okay because life is meant to be a journey of ups and downs and I have no doubt that we all have many people placed along our paths to help us in ways that we may not even realize we need.

Picking up where I left off – my first scan was done on December 13th and I found out that same day that I had a mass. My general doctor got his staff to work right away putting out feelers to see what surgeons they should get my scans to and by the following day thought they had it in the right hands. They had gotten the suggestion from another doctor to send it to a surgical group – there are something like 15 surgeons involved in it just in Utah County – where multiple surgeons would look things over and someone was supposed to get back to us. However, after multiple phone calls from my doctors office and from me over the course of a couple of days we were getting nowhere really quickly. After I had talked to 3 different people there and gotten the major runaround, I finally got in contact with someone who was determined to figure out what was going on. She was super helpful and actually did her job in finding out which specific surgeons had already looked at everything and after about 15 minutes on hold she came back on the line and said none of the surgeons in the group could do the surgery I needed though I wasn’t given any hint as to why.

So, back to square one we went and I let Melissa, my point of contact at my GD’s office know what I had been told and she said she would keep working on it. Thank heavens for Melissa who was contacting me multiple times a day and letting me know exactly where things were on their end. She was amazing and I have no doubt it would have taken much longer to get on to the next step without her working so hard and getting frustrated right along with me. We decided to drive up to my parents’ house since I could do everything just as easily from there and because we needed a distraction. After reaching out to a few other doctors and surgeons the consensus was that I needed to meet with a gynecologist. Melissa let me know that she had already sent everything over to one who had been recommended but once again we didn’t get very far. That gynecologists’ office kept saying they hadn’t seen anything come through on their end even after poor Melissa had sent it multiple times. There is more to how all of that went down but in the end the gynecologist did see my scans and everything and reached back out to Melissa saying that he also was not the person for the job. But he recommended a gynecological oncologist and had already called and talked to her himself saying that there was potentially a patient that she could help. Since we had already had so many problems simply getting in contact with anyone every time a new referral was made I asked that she also send everything to the gynecologist who had performed my C-section since I had been very happy with him.

Melissa did just as I asked and my gynecologist’s assistant called me not even an hour later saying that they wanted to meet with me that day if possible. As such, on December 16th, we drove back down the canyon to meet with him. When we got to the office it was very busy so it was quickly apparent that Dr R was squeezing me in wherever he could which was greatly appreciated. It took quite a while for someone to call my name and take us back but the appointment itself was very short and concise. Dr R said it wasn’t a surgery that just anyone could do because of the size of the mass as well as the fact that both he and the other gynecologist who had reviewed everything both believed it to be an ovarian cyst. He also thought that it was trying to shift around a bit which was likely the biggest cause of the pain I was experiencing. He seconded the recommendation of Dr H who at the time unbeknownst to me had already called and spoken with my GD saying that she thought it was something she could tackle. Upon hearing that it seemed like everything had aligned and I was in with a doctor that would be able to help me.

A surgical consult was scheduled with Dr H for January 6th and one of her nurses gave me a couple suggestions for at least minimally managing my pain until then. As luck would have it Dr H had a surgery that ended up getting pushed back so the consultation was bumped up to December 30th. Dr H was super upbeat and very confident that she would have absolutely no trouble removing my ovarian cyst…until she actually felt my abdomen and immediately had the slightest of confused looks on her face. She said she was surprised that the cyst was sitting up as high as it was based on my CAT scan that she had just barely reviewed again right before meeting with me. However, she was still fairly certain it was probably an ovarian cyst and after leaving the room for about 10 minutes to look at my scans again she came back with a plan to have a general surgeon in my surgery as well on the off chance it wasn’t an ovarian cyst. She asked that I get an MRI done prior to surgery so her nurse got right on getting that scheduled so we could aim for surgery being done on January 5th.

Everything worked out with getting in for an MRI two days before surgery so it seemed that everything was working out for the best. A general surgeon was assigned to my surgery as a second pair of eyes and they had a pathologist ready as well so they could biopsy anything that she thought may need biopsied right at the time of surgery. Being the first time that I had gone under anesthesia I don’t remember leaving the pre-op area or being taken to the post-op room afterwards. I had apparently been in the post-op room for about 15 minutes before I registered a nurse calling my name and asking if I could hear her. I remember talking to her just long enough for her to ask if I remembered where I was and how much pain I was in. I responded and was out again what seemed like not even seconds later. Some short time later I registered her saying my name again and asking the same questions. She gave me some pain medication and could tell I was going to go back to sleep and said she would be nearby and would keep checking in on me. It took me a little over an hour to fully come off the anesthesia before they took me back up to the patient rooms.

My mom and Cliff were already there waiting and Cliff immediately asked me if they had said anything to me yet as far as how the surgery had gone. They hadn’t since I had just barely fully woken up. Between Cliff, my mom, and the nurse assigned to me they let me know that nothing had been done as it had ended up not being an ovarian cyst or anything related to my female anatomy at all. That automatically pushed it out of the wheelhouse of Dr H. She and the other two surgeons there who ended up looking at it as well all said they hadn’t seen anything else quite like it before. That was definitely a big wrench thrown into the scheme of things and we were back to square one all over again.

It was about 7:30pm by that time though so nothing would moving forward at all until at least the next day. They said I was good to leave so we made our way out to the car to drive back up to my parents house where my dad had been watching my son while we had all been gone all day. My mom said she was hungry so I assured both her and Cliff that it was perfectly fine to stop somewhere for some food after stopping to get my prescriptions. They decided to stop at Crown Burger and as my mom was driving through the parking lot to find somewhere to park I made a remark asking why she was parking so far away. They both just laughed and one of them said it wasn’t exactly kosher to park in the drive thru lane. Then Cliff also informed me that it didn’t matter where they parked since I wasn’t going to be going inside anyways. Clearly, coming off of anesthesia for the first time takes quite a while for all brain cells to get firing properly again. After they got their order we got right back on the road to go back home where I knew we’d probably be waiting for a few more days before hearing anything else.

Before all of this happened I thought I was a pretty patient person – really I still am overall– but slowly and surely I feel like my patience in waiting and wondering is slipping away. Up to this point of the story I think the most frustrating thing was the referral process and how many doctors offices are so bad at communicating things. As I mentioned last time, my GD’s office was a much needed bright spot in that regard because they were so wonderful at letting me know that they wouldn’t let me slip through the cracks if they had anything to do with it. As lacking in communication as most of the surgeons and doctors were I am grateful that they knew what their skills are and weren’t hesitant at all to simply say they couldn’t help me and make the next recommendation of someone else to reach out to.

I have also discovered that I have started paying way more attention to individual words and phrases than I used to. I'm someone who has always had a love of reading and really, even a love of learning new words. When you are going through anything medical you definitely learn a lot of words whether you want to or not but oddly, the words I've been learning the most about are words I thought I understood better than I did previously. Words like hope, trust, patience, service, etc. Let's talk about hope for a second. I have always tried to be optimistic through hard times in life and have hope that things will get better and work out in the end. I still try my best to do that but through this particular trial I have learned that hoping for good things to come doesn't mean that you never worry about things or have moments where the hope just seems to have fizzle out. Hope also doesn't mean that you aren't disappointed and frustrated when things don't work out as you were longing for them to. However, I feel that when we cling to hope our hearts and minds become more susceptible to seeing all of the smaller blessings and recognizing the good moments through our trials even if sometimes that recognition comes in hindsight. Even words with the most positive of meanings can be hard to remember and hold on to in times when nothing seems to be going the way we want it to.

One of the biggest blessings so far is one that hopefully isn’t a surprise to any of you who know me well– family. Cliff has been amazing through this whole ordeal and was constantly asking how I was feeling followed immediately by asking how I was actually feeling if he thought I was trying to put up a front at all. Our son is possibly one of the most chill toddlers – truly. Don’t get me wrong, being a 17-month-old toddler boy at the time he was all over the place messing in things and always making noise but what toddler doesn’t do those things? However, one of his favorite things to do is being read to and looking through his books by himself multiple times throughout any given day. That definitely made recovering from that surgery easier not to mention that we hung out at my parents house through Christmas because I didn’t want to be home with just the 3 of us where I knew I’d be that much more likely to dwell on all the answers we didn’t have all the time. Cliff’s parents and all of our siblings were reaching out regularly offering words of support and checking in on how I was doing not to mention many of my aunts and cousins doing the same as well.

We are fortunate in getting to teach a primary class in our ward so back at the beginning of everything I had let a few people in our ward know what was going on and had been keeping them updated so many ward members were checking in as well. I’m definitely not the most extroverted person in the world but I’m also not the most shy either. From the get go anytime anyone would ask if I cared if a certain person was brought into the loop on things I would always say that I didn’t mind at all. As far as I’m concerned all the prayers, thoughts, and services that have been offered to us are the very things that have gotten us through so far. I’ll touch more on that next time but I hope that all who have reached out or done anything for us know how much we appreciate you and your genuine concern. I’ll end with one of my favorite quotes:

“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” – Maya Angelou

Thank you to all who have made me feel loved and cared for, I hope that one day I’ll get to return the favor.