Mayo Clinic

The visit to Mayo Clinic this week was fairly productive I think. The urologist I saw there is certainly willing to help me figure out what the underlying problem is, rather than just saying it’s such and such and expecting someone else to fix it (that’s the case locally). As such, when my stent is exchanged later this month, it will be done as outpatient at Mayo, instead of outpatient where I live. Doing it there will also allow the urologist to run some tests while I’m under general anesthesia. It’s an easy enough procedure, but thankfully it is done under general anesthesia. Having one removed is uncomfortable enough (and is done in the office, with just some topical numbing). I can’t imagine having one placed while awake.

My urologist at Mayo is also putting in a referral to a colorectal surgeon to get their take on the situation. No one quite knows what the “mass” is and outside of an aspiration biopsy last fall, no one has really tried to figure it out. Tests done on the aspirated fluid indicate it’s not malignant, but not much else. The urologist was also going to talk to Interventional Radiology about other possibilities for my blockage issues on the right side.

Overall, I left Mayo with the feeling that I had seen a doctor willing to help me get “unstuck” and help me find the answers. She understood and agreed that the stent at this point is nothing more than a band aid for a problem no one understands. It’s a terrible thing to be caught between doctors. Hopefully having a urologist and colorectal surgeon at the same facility will help matters along.

I am feeling better today than I have in some time. That’s likely due to the increase in my fentanyl patch . I wanted to keep going down on the fentanyl patch, but unfortunately I’m not tolerating the stent well at all. The hope is that the increased dose will get me feeling better and allow me to be untethered to the heating pad. Only time will tell if it’s working.


Wow! It’s been a year since I updated this blog. 2021 was a very difficult year. That January surgery did not go well. When all was said and done, I spent two full weeks in the hospital. That stay ended with massive panic attacks.

Without goinginto full detail, I spent more than 9 weeks in the hospital in 2021. It ended with a stay in the hospital for my kidneys. I had stents in both ureters. The left stent has been removed, but the right one will likely stay in for much of the year. Chances are good that at some point this year I will have a protectomy.

With Covid being what it is, it’s been awhile since my mom and I went to church. There’s no social distancing and few people are wearing masks.We are being verycareful so that none of us get Covid. Even though ththe three of us are all boosted, we’re being very careful. Covid has been bad in recent weeks. Thankgoodness for the Come Follow Me curriculum. I’ve decided to be better about doing it. As a result I bought the study helps for “Don’t Miss This” on Deseret Book. I know without the extra help, I’ll get lost in the Old Testament. The people behind “Don’t Miss This” are terrific.

Choosing to Trust

I’ve been trying to write this post for weeks now, but the words just weren’t there. I couldn’t seem to put into words what choosing to trust the Lord really means. It’s been on my mind for a few months now, and I think I finally know what I want to say.

What does it mean to trust the Lord? In my mind, it means to put your life in His hands and trust He will see you through whatever storm you face. It’s not really that easy; nothing important ever is. I’ve come to believe it’s supposed to be hard. Unconditional trust isn’t something the natural man knows how to do. We have to learn to trust the Lord unconditionally. We do that a little bit at a time, day by day. Every single day we have to choose to trust the Lord.

It’s easy to trust the Lord when things are going well. How do we trust Him when it’s hard and we don’t know what comes next? How do we trust the Lord when it looks like nothing could ever be right again? How do we trust the Lord when it appears His promises could never come true? To a certain extent, it’s like stepping into the abyss. You just have to do it. It’s scary to trust what you can’t see, especially when your mortal eyes and mortal perspective can’t possibly see a way through. When in doubt, choose to trust the Lord.

Over the last few years, I’ve learned the hard way how to choose to trust the Lord. Even then, I don’t always remember to trust. Sometimes fear gets to me and overwhelms that urge to trust. How do you trust the Lord when facing down a possible terminal illness? How do you trust the Lord’s promises when you can’t see past what’s in front of you?

Trust takes practice, even when it involves trusting the Lord. It also takes a change in perspective. It also means remembering that the Savior has been down every road any of us will ever travel. Heavenly Father knows all. Together, they will lead us through whatever storm we face. Although we may not be able to see the path ahead, they can see it. They are holding their hands out to us, willing to lead us through the dark, but it’s up to us to take hold.

This idea of trust, it doesn’t overtake the practice of faith. Rather, it’s an aspect of faith. Learning to trust is something we can do to help build our faith in Heavenly Father and Jesus Christ. As we learn to trust Them, we get to know them. We begin to understand Their nature, to the extent that we can. They will never let us down. Our Savior has been through everything we have been through. As we come to understand that, we come to better understand the Atonement. With increased understanding comes increased faith. With increased faith, the gospel goes from abstract to something that works in our daily lives. We can see how the Plan of Salvation actually works in our daily lives.

The better we get at trusting the Lord and His promises, the less room there is in our lives for fear. This is because trust leads to faith, and where there is faith there is no fear. When we have faith, there is simply no room for fear. That’s not to say it’s easy, because it isn’t. Like anything else in life, it takes practice to get better. But we’re also human and sometimes we make mistakes. Sometimes we forget to turn first to the Lord. We forget He is reaching out His hand to us, ready to comfort us and lead us through the storm. But every day we can choose to trust Heavenly Father and Jesus Christ. We can make that conscious choice and in time we’ll come to know them and trust them in good times and in bad.

Every day, I do my best to trust my Heavenly Father to see me through whatever comes next. My medical status right now is what I would call stable but unknown. Earlier this month, I spent several days in the hospital with dizziness and blood pressure issues. At one point, my blood pressure got down to 79/40. I saw many different doctors and they ran several different tests. None of those tests produced a diagnosis. Thanks to two medications, my blood pressure stabilized back in the normal range and I was discharged. Following a hospital stay in late August, I had seen both an endocrinologist and a nephrologist for a lower than normal blood pressure. Endocrinology produced blood work that pointed perhaps to hypothyroidism, but not classic hypothyroidism. For now I’m on a low dose of a synthetic thyroid hormone. Further testing still cannot point to what exactly is going on with my endocrine system.

I saw my nephrologist again and he essentially threw his hands up in defeat. He has no idea what is going on. The hospital tested for all the usual answers and none of them were the right answer. So here I am with two medications to my list and no answers as to why my blood pressure is so wonky. I have no answers as to my dizziness either, dizziness that is sometimes so bad all I can do is lay in bed. I don’t know why my thyroid blood work is out of whack. A trip to Mayo Clinic is in my future, but there are no guarantees that they will have answers either. In the meantime, my only answer is to put my trust in my Heavenly Father, and trust that He will see me through whatever comes next.

Finding Routine

Over the last month, life has found a certain rhythm, a routine if you will. My day begins around 9am, with breakfast and meds right after. By 10, I’m getting hooked up to my fluids – 1 liter of lactated ringers. By 11:30, my fluids are done and I’m ready for a nap. Some days it’s a long nap, some days it’s not. Most days though it’s a long nap. I’m usually up again between 2 & 3 and awake until 9 or 10. Bedtime is at 9 or 10, whenever I lose my first wind. Then I’m up a couple times at night to empty my bag and then the day starts all over again.

Overall I’m dealing with a lot of fatigue along with some joint issues. A few weeks ago I started having some joint pain out of nowhere, including in my fingers. I’m still having output issues and a lousy appetite.

I finally saw my oncologist today and cancer wise, I’m still in the clear. My scans all looked great. He echoed seeing an endocrinologist, so I’ll be making that appointment tomorrow. He also ordered some basic thyroid blood work that I’ll have done tomorrow. Thyroid issues would explain my issues. I also have an appointment with a nephrologist the first week of October. My next oncology appointment isn’t until 2021!

I’m beyond ready to go back to maintenance appointments. I miss feeling really good. I’ve been thinking about last summer and how amazing I felt. I had a great big party celebrating a year cancer free and then a few weeks later traveled to Utah for a friend’s wedding. I had times this spring where I felt really good, but not in awhile. Last summer I was finally starting to drop the length of my naps. Then I had my big surgery and naps were back in full force (as expected). After that, I had naps nearly every day, but I did well after the nap. These days, I have my nap and could still go back to sleep. And sleep. And sleep.

I’ve been reminded again that once you’ve been diagnosed with cancer, there’s no going back to the way things were before. Not emotionally, not physically, not medically. Even with the great strides made in cancer treatment, it’s still a bit of a scorched earth approach. And in the end, you do what you have to in order to get to NED and stay that way. But it leaves scars. It can easily leave behind additional medical issues, some more immediate and some that crop up down the way.

For me, it’s left behind an ostomy and the issues and complications it brings. It’s left me with an ovarian fragment to be dealt with one day. It’s left me with “scanxiety,” despite being pretty good at dealing with anxiety. Even once you get to NED, there’s no going back to before.

Hopefully Home Tomorrow!

Yesterday was a very rough day, pain wise. We opted to try going off IV pain meds. Any of you who have been with me from the beginning knows how bad that has gone in the past. A number of factors played in but I didn’t get the new round of pain meds my doctor prescribed until three hours after he prescribed me. By that point I was in a lot of pain. That meant that by midnight, the doc on call authorized a one time only dose of 1mg of iv dilaudid. That finally broke through all my pain and stopped the viscous cycle. Today, I am on ibuprofen, Tylenol, a muscle relaxer, gabapentin, and 4mg of oral dilaudid. I am finally comfortable. 

The hope was to talk to pain management today but it doesn’t look like that’s going to happen, so I’ll be discharged tomorrow with enough meds for at least the weekend before dealing with pain management on our own next week. The reason we’re talking to pain management is that PM has many more options to keep me comfortable than my surgeon does.

All of this has been a great reminder of how dangerous a stomach/flu bug can be to me with my ileostomy. I know people who have gotten sick with what most consider the stomach flu and wind up in the hospital for a week because they can’t stay adequately dehydrated. Dehydration can lead to low BP, which can lead to respiratory distress, so it really matters. This spring before we moved, my parents both got the stomach flu. We did a good job isolating me from my parents and I did not get it. All of this is an easy reminder of how dangerous stomach bugs are to me.

Once Again, Not the Easy Way

It’s Sunday and I’m still in the hospital. I’m still having too much output from my ileostomy and it’s keeping me dehydrated and dizzy. My blood pressure overnight was great, but it bottomed out again this morning. In general, having an ileostomy leaves you at higher risk of dehydration because out is so liquid. Mine got all screwed up with surgery and bowel prep and it’s a struggle to get it back under control. Between my urine output and my ileostomy output, I’m losing too much fluid for me to manage the dehydration risk at home. I also can’t have the good pain meds until my blood pressure gets up over 100. That is because the pain meds can send my blood pressure down too. If my blood pressure gets too low, it can lead to respiratory distress.

I am now on both Metamucil and Imodium to bulk up my stool and slow it down. Bulking it up means I lose less liquid. I’m also getting two bags of fluid this morning. Unfortunately, the first bag only sent my blood pressure up by a point.

Since surgery itself went so well, I figured I was in the clear and that for once, I’d done things the easy way. As it turned out, I spoke so soon. I’ve had post surgery issues no one expected. My mind is all muddled and I hate it. The nurses won’t let me walk the halls with my dizziness, in case I were to fall. It’s like trying to think through molasses. That’s more disconcerting that my pain level. I can’t wait until I can go home and sleep in my own bed.

Still Here

The hope yesterday had been that I’d get to go home today. Turns out that was a pipe dream. While my BP got better yesterday after fluids, it’s back to struggling to get over 100. This morning it was under 90 and only got a couple points better when I sat up. It did get high enough for my nurse to be comfortable giving my the dose of dilaudid.

The bigger issue is that my ileostomy output yesterday was more than 2 liters. That’s way too much for the doc to be comfortable discharging next. In doing a little research, normal output for an ileostomy should be 800-1000 ml/day. Pharmacy screwed up with they input my medications into the system and didn’t put in that I take Imodium and Metamucil at home. So until this morning, I had had either. I’ve now had a dose of Metamucil and at some point will have a dose of Imodium. Together, they slow down the passage of fluids & nutrition through my small bowel. That gives it time to properly digest things and absorb the things it needs to. Those two meds also help thicken up my stool so I’m not constantly losing fluid. One of the functions of the colon is to remove the liquid from stool and put it back into the body. That is one of the few functions the small bowel cannot take on following a total colectomy. Between the very liquid stool and urinating, it can be difficult at times to stay hydrated and then when you become dehydrated, it’s difficult to fix without medical intervention.

My technician came in and checked my blood pressure. Even after a full bag of fluids (1 liter), my blood pressure is still low. It was 95/54. Normal for me is around 115/60. It got that high after heater’s round of fluids but today it’s been in the tank again.

My mom will be here shortly and we’ll see if I can walk the halls. I haven’t seen people walking the halls the few times I’ve had my door open but wouldn’t surprise me if we’ll not allowed to walk the halls. If that’s the case, the next best thing is to sit in the big chair in my room.

I did get a look at my new stoma last night when I changed my bag. It took a good chunk of the day to get someone to help me change it. I literally just needed another set of hands while I changed it myself. With the pain, I don’t have quite the range of motion right now. So I needed someone to help me make sure everything made it in the garbage and to hand me things that might end up on the floor or just too far to reach. I had all my supplies and changed it myself with that extra pair of hands. Initially, the nurse and tech didn’t understand why I’d want to change it, mostly because they assumed I’d simply be putting on the same appliance. It took them a few minutes to grasp I was going to put on a bag Id brought from home. My stoma right now is pretty ugly and somewhat bloody. It’s also very big and my usual bags are just barely big enough to accommodate it. It’s hard to know right now how the stoma is pointed, but I’m hoping my current bag system will work with it long term. I know for sure though that I’m not interested in a two piece system. There’s too much hard plastic that can dig into my skin (this wasn’t my first run in with a two piece system). My own bag has some plastic of course, but it’s so much softer and pliable that by a few hours after a bag change, I don’t even notice it. The bag change went well and so far no leaks. While it heals, I’ll be much more prone to leaks as the stoma itself will shrink as it heals. While I don’t know how big my stoma will be when it heals, it won’t be as big as it is now.

To end, I’ll be praying I get out of here tomorrow, but that’s largely determined by whether we can get my stoma back on track. Right now it’s in overdrive.