Moving On

It has been a while since my last post – life happens you know? I’ve been slowly working away on a list of projects around the house. Between having a toddler who is always on the run these days and not always having a lot of energy to do much it is a process. On the days I have more energy I tend to take advantage of it and may possibly overdo it sometimes…or all the time. But, on the days I have less energy I’m learning to give myself a break both mentally and physically so I figure it all somehow balances out in the end. During my down days I get to spend some extra time reading to my son who will often bring me book after book for 30 minutes or more because he loves being read to. He has a few that he has us read to him multiple times each day and I even have his all-time favorite book memorized. When I first had symptoms from my mass I would apologize to my husband many times for not being up to doing much of anything. It was a bit different then since I was in very constant pain at the time so it was a bit easier to be alright with myself not doing things. Now, being alright not accomplishing everything I want to in a day’s time is harder to accept but I’ve learned to love those days all at the same time. There’s definitely something to be said about having to slow down some times and being able to focus on the more simple and small things.

When I last wrote I left off after I had found out that what was fairly certain to have been an ovarian cyst turned out not to be that at all. So, I left the hospital with my mass still fully intact with no ideas really of what it could be. Thinking that I was being smarter this go around I decided to wait a few days before calling the office of the next surgeon on the list assuming that it would mean less phone calls and emails on my part. Unfortunately, my smart thinking backfired completely and I ended up making at least as many phone calls, though honestly probably more, than I had with the previous referral. This time was different in that I hadn’t heard anything at all from Dr H’s – the one who did the exploratory surgery – office until I reached out to them four days after surgery. Even more weird was that after surgery I hadn’t ever even been told a general timeline of when they’d reach out to see how I was doing post-surgery or anything like that. On my end it seemed that because my mass turned out not to be an ovarian cyst Dr H just signed out of the whole process right at that moment and that nothing was being done to move anything forward. I’ll say it again, communication is a key thing that I’m finding that a lot of the medical field is sadly lacking in. At least, that has been my experience overall.

After emailing back and forth with one of Dr H’s nurses a few times and leaving many messages with the new surgeon’s office we finally found out that even though the nurse had sent all of my records multiple times that no one at the new office had seen anything yet. Amazing how that seems to happen time and time again with all the technology we have at our fingertips these days. But, I digress…back to the story. Around a week and a half out from surgery Dr H’s nurse was able to get a hold of someone in the new office who made sure everything came through and she became my point of contact there. It was another bright spot in the mess that is the medical referral process because this person was able to accomplish everything that she would commit to in the exact timing that she would commit to. At the time I credited that entirely to her but I’ve since learned that that is just how things run at that hospital – again, my personal experience but I’ve heard great things about this hospital from others as well.

The doctor that I had been referred to practices at the Huntsman Cancer Hospital in Salt Lake City. My point of contact – I don’t remember her actual name so I’ll just call her Amy from now on – let me know that she had personally received my records and assured me that she would help me from then on until I was in personal contact with a member of the staff of whichever doctor would be taking my case on. Amy then went on to explain that their usual first step there is to have any doctor there who may be able to tackle any said issue look everything over and then they collectively decide which specific doctor is best suited for it. Obviously, I’d been hoping that my records being there meant getting an appointment scheduled but Amy promised that she would keep me informed in how things were going along the way and make sure that I was completely taken care of. Thankfully, she did just that. She called me back that evening right at the end of her work day and said that one of three doctors had already confirmed receiving my records and had been able to look through some of it already. Then the next morning, a Friday, she called again and let me know that the second doctor had confirmed receiving them and had committed to being able to look through everything first thing in the morning on Monday. Amy called once again that evening right before heading home for the weekend and said the third doctor had my records as well and that the three of them would be meeting together Monday afternoon sometime to discuss it all together and that she would reach back out to me again as soon as she had any news at all.

Even though Amy had proved that she would be in consistent contact with me I remember thinking that that weekend dragged on for forever. Waiting can sometimes be the hardest thing in the world. Monday came around and I wasn’t really expecting to hear anything that day since I hadn’t been explicitly told to expect any news that day. However, as luck would have it, Amy did call me that day. Once the three doctors met together and discussed what had happened so far with me they very quickly decided that Dr S was the one for the job. Funnily enough, it was Dr S who had been specifically recommended there to begin with but knowing that other doctors thought she was up to taking me on was a nice reassurance. After I got off the phone with Amy I don’t think it was even an hour before someone from Dr S’s staff called to get an appointment scheduled to meet with her.

The appointment was on January 26th. I only recall us – my husband and I – sitting in the waiting room for a couple of minutes before being called back. First I met with a nurse who did all the usual stuff - checked my weight, blood pressure, etc. Then she took us to a room and asked what my symptoms were and what had been going on. That all took about 10 minutes and then she asked if I was alright with a couple of medical students coming in to talk with me before Dr S would come in. The Huntsman Cancer hospital is a teaching hospital. I was perfectly fine with that so the nurse left and a few minutes later two medical students came in. They asked basically the same questions that the nurse did and one of them asked to feel my abdomen and made the comment that he was surprised that I hadn’t had issues with throwing up or other digestive issues simply because of the size of my mass. Up to this point the only symptoms I’d really had aside from the pain was a bit of light-headedness, dizziness, and fatigue. Before knowing I had a mass I had chalked all of those symptoms up to other things…colds, recently starting to take steroids through an inhaler for a persistent cough I had had for a few months, etc.…but looking back I’m sure those things had a lot more to do with the mass.

The two students left shortly after that and said it would probably be about 10 minutes before they would return along with Dr S. I don’t know what it is about me and waiting throughout this process but any time I have to wait for whatever related to my mass my mind instantly goes a million miles an hour thinking about anything and everything. During those 10 minutes most of my thoughts were once again about the possibility of cancer. I know there were things that attributed to thinking about that – being in a cancer hospital being the most blatantly obvious one – but it was a thought I had somehow managed to push to the back of my mind for those few weeks since the exploratory surgery so I was surprised how quickly it came back to the front and center of everything in those few short minutes. The students returned with Dr S almost exactly 10 minutes later so at least it wasn’t a longer amount of time. Dr S asked all of the same questions for a 3rd time and also felt my mass then jumped right in to showing us my CT scan that had been done back in December.

If you don’t know how a CT scan works this is how Dr S explained it to us - it essentially takes pictures in layers starting with the front of your body moving towards the back. So, with each page she turned we were seeing more organs. My mass was able to be seen in every layer of the scan which makes sense with how big it was. It’s kind of cool seeing scans like that however, as cool as it can be I’ll be perfectly happy if it’s not something I get used to seeing a lot of moving forward. When Dr S got to the last page of the CT scan she began telling us what she thought my mass was. She believed it to be a lymphangioma which yet again was a great case scenario. Immediately after saying “lymphangioma” she quickly said that that would mean my mass never was cancerous and never would be cancerous. Pretty great right? She made it sound like the surgery would be a relatively simple one – she could resect the angioma laparoscopically and would only be adding one, maybe two, more really small incisions to the ones that I already had. After explaining what surgery would be like she said that ultimately it was up to me when surgery happened. She said that the surgery could happen as soon as her schedule allowed or that I could wait another 2 or 3 months since I wasn’t experiencing any symptoms at the time aside from pain.

After she finished what she had to say about it she asked if we had any questions which neither of us did as she had very well covered all of the bases as far as we were concerned. The 3 of them left the room with her saying that the nurse would be back in after to schedule surgery and asked that we have at least a couple of weeks in mind if not specific dates that would work for us knowing that her schedule was at least 3 weeks out at the time. The nurse was supposed to give us 7-10 minutes to discuss it but she knocked on the door just a couple of minutes after Dr S left the room and told us that one of Dr S’s surgeries for the following week had just been rescheduled while Dr S had been talking to us. Not particularly looking forward to waiting another month to begin with I glanced over at Cliff and he simply said that he had no doubt his boss would be perfectly alright with the timeframe as far as that went. So, yet again due to a miraculous rescheduling of someone else’s surgery I was able to get surgery scheduled for just a few days later on January 31st. I’m not sure that anyone every truly looks forward to surgery but I was at least excited at the prospect of my mass being able to be removed and was very grateful that it was a type of mass that isn’t of concern for cancer. I’ll end my story here for now with a few more thoughts.

My son’s favorite book that I mentioned before is called My Truck Is Stuck and I’m sure you can all essentially guess what happens from the title. Not so ironically it is about a dump truck that gets stuck in a hole. Throughout the story multiple people in different types of vehicles stop to try and help get the truck out of the hole – a car, a jeep, a moving van, a school bus, and finally a tow truck. When the mechanic shows up the dump truck driver is sure he will know exactly how to get his truck out of the hole and the mechanic’s reply is, “Sure, to get it on its way just hook it up and then you’ll say, “What luck! My truck’s not stuck!”” It is such a simple story – can’t be too complicated being geared towards younger toddlers –yet it is one I’ve come to love for a few reasons. First, I like how many people stop to help the dump truck driver. They could have easily ignored him and continued on their respective journeys but instead they chose to stop and help another. Second, I like how sure the dump truck driver is that someone will know just how to get the truck out of the hole and keeps asking for help until someone comes along who is able to accomplish just that. Lastly, I love the mechanic’s simple and assuring reply.

After my second surgery there was a lady in our ward who reached out to me and said she had heard a bit of what I’d been dealing with from someone else. She didn’t know exactly what was going on but simply let me know that she was thinking of me and asked if we could set up a playdate for our sons who are fairly close in age. She followed that up with letting me know that she would be happy with however that needed to happen – either her picking my son up to go to her house if it was a day where I could use a nap or wanted some time to myself or them coming to us. I told her it would honestly probably depend on how I was feeling on any given day so we planned for it to happen a week or so later and she said she would wait to see what I wanted to do that day. The scheduled day came and I felt up to having them come over to our house so they did. Her and her son were here for a couple of hours and it was a wonderful and needed distraction. It was nice watching my son, being the older of the two, happily share his toys and constantly keep handing her son different toys and animal crackers as soon as he finished eating a cracker or seemed to lose interest in a toy. I had been feeling like a useless mother not being able to pick him up or get down on the floor and play with him so it was wonderful seeing him have another child to interact with for a while. Talking with this sweet lady was also exactly what I personally needed that day. I can’t say that I remember everything we talked about but I remember being so appreciative of her taking the time to come over and for thinking to do that specifically to begin with. I’m sure it wasn’t a big deal to her at all but at the time it meant everything to me simply having someone to talk to for a while on a day when I otherwise would have been home alone with my son until Cliff got home from work.

Now for some analogies I’ve drawn from my son’s favorite book.We all have experiences in life where we feel stuck in one way or another and we all hope that there is a way out of our being stuck.It can often feel that in these moments we are alone in our concerns and our situation when in reality we are anything but alone.I can’t begin to say how many times I have had someone say exactly what I needed to hear at the perfect moment to give me hope about whatever was concerning me at that time.Not to mention acts of service or someone simply being a listening ear.None of us have the exact same experiences as anyone else but I fully believe that we all have personal experiences that make us just the right person to help someone else when the time comes and I promise the time will come.Even more than that, we all can be there for others in some way even if we feel like we don’t really have a way to relate their exact situation.I’ve had a couple of priesthood blessings given to me thus far in this journey and both times those who were asked to help give them were more than happy to do so.We’ve had multiple meals brought to us and offers of help with housework or grocery shopping if needed.I’ve also had a lot of people reach out just to ask how I’m doing and to remind me they are there for help if/when it is needed moving forward. I also know that there a lot of people who have been offering prayers on my behalf and I have no doubt that those prayers have and will continue to help.It is a great blessing to know that Jesus Christ is my mechanic and that He knows exactly how to get my truck unstuck.I have no doubt that things will keep happening as they should and what a relief it is to know that everything is in God’s hands, especially in the moments when it feels like there is little else to hold on to.