Ovarian Fragment Update

I was instructed to be at the hospital at 6am Wednesday morning for an 8:50 surgery. We knew there were risks, though we figured the biggest risks were to the ureter. We knew, but had forgotten, that there were risks to they bowel as well.

Initially surgery went well, though not as expected. My colorectal surgeon was in on surgery. When I saw him in early December, he wanted me to let him know when I had surgery and then to give him a reminder the week of surgery. To my surprise, he was in on the entire long surgery. Both he and my gyn oncology surgeon could not find the ovarian fragment – and they looked hard between my anatomy and the November CT scan. One possibility is that the Lupron injection I got in November made it too small to see. My surgeon also couldn’t find in my medical history where it said they had found benign ovarian tissue.

There was a lot of scar tissue in the area so she removed much of that. She also removed the scar tissue surrounding the ureter and sent it to the pathology lab. Interestingly, the scar tissue around my ureter included bowel tissue.

I woke up Thursday morning feeling okay. Not great, but okay. I saw my surgeon about 7:45 Tuesday morning and we were talking about going home later in the day. However, as the day went on, my pain increased. I did get some gas pain – and yes, it sucked too – but my abdominal wounds hurt more and more. By 11 am or so, my pain levels were a 8/9 on the pain scale. It was a very rough day. We then added iv dilaudid and pushed my release back at least a day. But I was more interested in getting my pain under control than leaving with that kind of pain.

Thursday night I started to have a fever. It never got over 101.1 or so, but definitely a fever. When my surgeon came to see me again about 6ish, she had started to wonder if I had a bowel leak and whether I’d need to go back in for emergency surgery. As I fluctuated overnight Thursday night, my surgeon was called 4 times with updates. She debated deferring me back in the ER overnight Thursday night. Instead, when she came to see me about 6:30am yesterday, she opted to go back in for emergency surgery. By that point, the dilaudid wasn’t working quite as well anymore (1-2mg every 2-4 hours). She also pressed on some of my wounds and they hurt more than they should 2 days out of surgery. Despite my bw looking good, she was concerned I had a small bowel leak, so back into surgery I went.

As it turned out, I did have a small bowel leak. It was a very small leak, which explained by my belly hadn’t gone hard and why I wasn’t yet super sick. There was also a section of my bowel that was super thin. This surgery was a laparotomy, meaning an open surgery this time. It is a smaller open access than my other surgeries, but I definitely forgot how much it sucks to cut through abdominal muscles. So now I’m in the hospital through at least part of Monday.

My blood pressure is playing games again, which is making things difficult. It’s been pretty low at times. It needs to stay above about 95 and it’s really struggled. They did give me a bolus (saline given quickly) of fluid and that made my BP go up. We’ve been playing with my meds some and now my ostomy output is high so I’ll have to play with it and have the docs help me play with it.

Overall I’m feeling better than I did on Thursday. I’m still on iv pain meds when my BP is high enough. The pain meds are working very well, so I can get up and move, sit in the chair, and walk the halls. As a side note, this is the quietest hospital I’ve ever been in. As a patient, it’s great! So for the moment I’m doing well and I’m so grateful that my surgeon followed his gut and got me back in for surgery. May you find reasons in your own life to be grateful.

Given my multiple surgeries this time, I got another stuffed animal – a penguin.

30 Months

I’ve been thinking a lot lately about the length of time that is 30 months. It’s two and a half years. It can seem a long time or it can go by in a flash. 30 months is also the median amount of time that stage IV colon cancer patients typically live after diagnosis. December 28 will be 30 months from diagnosis. I did it, I made it two and a half years after a stage iv cancer diagnosis.

I’ve also been thinking about those who didn’t make it that far. Making friends with other cancer patients is hard because you know some of them aren’t going to make it. That’s especially true when you start making friends with others who have stage iv cancer (cancer that has metastasized). At the same time, it is so important to talk to others who are where you are, or who have been where you are. They can understand the push and pull required to live fully for today and tomorrow, all while wrestling with your own mortality. You can’t be a cancer patient, especially a late stage cancer patient, without wrestling with your own mortality. For all that science has gotten better at treating cancer, it still hasn’t really conquered metastatic cancer.

This is my third Christmas since I was diagnosed with stage IV cancer and Lynch Syndrome in June 2018. I didn’t know it at the time, but my family didn’t think I’d see that first Christmas. I couldn’t see past the next round of chemo, or the pain in my side. I opened my Christmas presents that year from the hospital. We waited until Saturday the 29th to open presents since the whole family would be around. However, my back pain got bad enough that on the 27th that an ER trip was necessary. I spent nearly a week in the hospital with a liver drain draining an abscess. My dad brought my presents to the hospital on the 29th, where we FaceTimed with the rest of family back home and opened presents. Last year, I avoided the hospital, but wasn’t feeling great.

As for this year, I’m not feeling great. I’m back on antibiotics for a UTI that won’t leave. The heating pad is my friend and today it needed the help of narcotics to make me functional enough to frost sugar cookies. There will be a call to my doctor on Monday. I’m am also facing another surgery on January 6th – my fourth since June 2018.

Even with all that, and even facing down my 15th hospitalization, I’m still here. It’s been 30 months and I’m still here. Come January I will hit 30 months cancer free. 30 months cancer free marks the halfway point to the magic five years. The first 2-3 years are the highest risk for recurrence and I’m nearly through them. I still have a bunch of medical issues, some of which still aren’t understood. I’m on social security disability and that’s not likely to change. But it’s been 30 months and I’m still here.

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.

A Neverending Cycle

Sometimes my life feels like a neverending circle of doctors. I’ve not even been in Florida six months and already I’ve had one surgery, two separate hospital stays, and parts of 17 days in the hospital. And now I’m on IV fluids at home for the foreseeable future.

My ileostomy is still dysfunctional, nearly six weeks out from surgery. My output is still too high and too thin. As a result, I was discharged from my last hospital stay (August 3rd) with orders for IV hydration at home three times a week. Last week my surgeon upped that to daily IV hydration. I saw my surgeon again yesterday and he told me at this point, it’s likely to be another 3-6 months before my ileostomy sorts itself out. Yes, that’s months. So then I’m probably going to be on home IV fluids for awhile too.

My quarterly oncology appointment is next week, with my abdomen/pelvis/chest CT scans having been completed last week. No matter how good someone might be at controlling anxiety, “scanxiety” gets even the best of us. “Scanxiety” is anxiety surrounding new medical scans of any variety and waiting for the results. My anxiety is typically well controlled, but scanxiety still sneaks up on me from time to time. Hopefully everything is normal so that I can have a relatively boring appointment with my oncologist next week.

None of this is what I expected when I moved to Florida this May with my parents. I certainly didn’t expect needing to find a colorectal surgeon or having a new medical experience (at home fluids). I sincerely miss the days when medically my life was uncomplicated. I’ll even take going back to last summer when I was feeling great and doing whatever I wanted. I had recovered from chemo & my latest hospital stay and my second surgery hadn’t happened yet. But I can’t go back. All I can do is move forward and make the best of what I’ve got.

Hospital Stay #2

Yep, for those unaware, I had a second hospital stay recently. I was discharged from my initial hospital stay on July 20th and had an appointment the following Monday (27th) to see my surgeon for a followup. My stoma didn’t look great, but that’s a different conversation. Otherwise, things were going well enough when I saw my surgeon. Output was still a little high, but I was managing alright. However, that Monday night, my output went nuts again. I ended up going to urgent care for fluids on Tuesday as I was dehydrated. They called my surgeon who then wanted to see me the following day – Wednesday the 29th.

When I saw my surgeon, he prescribed a couple new medications to try. One was a drug similar to Imodium, but more powerful. The other was a cholesterol medication you mixed into a drink. He wanted to see me again on Friday. He also said if I was still feeling bad the next day or prior to my appointment on Friday, I could call his office for a direct admit to the hospital. For those unaware, direct admits are when your doctor admits you to the hospital and bypasses the ER.

I was then up all night Wednesday night emptying my bag. It was filling up every 90-120 minutes. At that speed, not only could I not drink enough to keep up, my digestive system was moving so fast that it couldn’t absorb anything I drank. I made the decision after I got up to call my doctor for a direct admit. I called my doctor’s office to leave a message and a little while later got a call back telling me my doctor had put in the orders and the hospital would give me a call as soon as they had a bed open. To my surprise, nearly as soon as I hung up with my doctor’s office, the hospital called. They had a bed ready. Even with packing a bag for the stay and 35 minute drive, I was settled in my hospital room by 11:30. It took some time for my doctor to put the orders in, but eventually I got put on fluids. After being on fluids for 36 hours, I was finally feeling more like myself. My output was still nuts so I was kept on fluids. It was decided that I would get an IV line I could go home with so I could receive IV fluids at home. My output was still high, but with a plan in place for fluids at home, I was discharged on Monday with an IV called a midline. I’ve taken to calling my midline my “appendage.”

I’ve now gotten fluids three times at home and it’s amazing to me how much better I feel afterwards. We had some kinks to work out with the fluid setup, but we’ve now got it working well. Right now I’m set to get fluids three times a week, but I see my doctor tomorrow and will see if I can get fluids every other day. I got fluids on Friday and the plan had been to wait until Monday for the next round, but I needed them today. I noticeably drag by day two and with a headache that just doesn’t quit until I get fluids. That headache is generally my first sign I’m getting dehydrated, especially since neither tylenol or advil will get rid of it. Hopefully fluids aren’t a permanent thing, but I was aware it was a possible complication when I had surgery a year ago to remove my remaining colon and go from a colostomy to an ileostomy.

My Hospital Stay, Explained

Now that I’ve been home a bit, I thought I’d explain how an expected hospital stay went from 2-3 days to 12 days.

Surgery was on Thursday, July 9th. The day before I had to do a bowel prep, which I expected. Bowel prep for surgery isn’t that different from the prep for a colonoscopy. Essentially, you drink a bunch of laxatives to clean out your intestines. In the case of surgery, it’s to decrease the risk of infection. Stool inside the abdomen is a recipe for infection. However, that can leave you dehydrated. That effect is worsened with an ileostomy. I was then NPO starting at midnight (nothing by mouth) until after surgery. All of that meant that by the time I was in preop Thursday morning, I was pretty dehydrated. To combat the ugly dehydration headache, they first gave me fentanyl. Fentanyl was great for the headache, but not long lasting. When it became clear that surgery wasn’t going to start on time, they gave me something more sedating. It was sedating enough that I’m one minute I was talking to the nurse and the next minute I had an IV in my hand with no recollection of how it got there. My headache was definitely gone though.

For my previous surgeries, my parents were allowed to be with me throughout preop. With COVID, my mom was only brought back to preop when it was time to say goodbye before I was taken to the OR. It made for a weird time in preop, especially as it dragged on. I did take my phone with me into preop, so I could keep her informed as things went on.

Surgery itself went well with no issues. My surgeon was able to go through my existing stoma to fix the fistula. In broad terms, he detached my stoma from my abdominal muscle, pulled out my intestine and respected it below the location of the fistula, and then attached the new end of my intestine to my abdominal muscle, using the same hole in my abdomen. This was the way we had hoped things would go. We didn’t know though until surgery whether previous adhesions (scar tissue) would inhibit my surgeon’s ability to pull out my intestine. I’ve had two open abdominal surgeries in the past and the thing about surgeries in general is that they tend to produce scar tissue. Scar tissue tends to make things inside the body stick together. There’s no doubt I have scar tissue, but thankfully it didn’t cause problems this time.

I spent a long time in recovery while I got a room assigned to me. By the time I got out of recovery, it was mid evening. I ended up on the 10th floor, the surgery, trauma, and colon & rectal surgery floor. By the time I got to my room, my mom was already waiting for me. That night wasn’t much different than any night post surgery – good drugs and innumerable nurse interruptions.

At this point, my blood pressure was lower than my doctors and nurses would like. My usual blood pressure is around 115/60. Typically when one is dehydrated, their blood pressure drops. That was initially the case with me. Low blood pressure also can cause dizziness, and for me it did.

My real problems began on Friday, though I didn’t know that until Saturday. Anytime I’ve been in the hospital, they’ve measured both my urine output and my ostomy output. Ileostomy output is very liquid. This is because stool is coming out of the small intestine, rather than the colon (large intestine). One of the things the colon does is remove water from stool and circulate it back into the body. As a result, dehydration is always a risk for anyone with an ileostomy. Normal output for an ileostomy is around 1000 ml per day. My output for Friday was 2000ml. That explained my dizziness and muddled thinking. With output that high, my doctor couldn’t release me because as a practical reality, I would struggle to drink enough fluids to remain hydrated.

Through this, there were many times my blood pressure struggled to reach 95/65. I had several days where I was dizzy and so muddle headed I struggled to text coherently. I had two sets of doctors while in the hospital – my surgeon’s group and a group of internal medicine doctors. Between them they worked to get my output under control. In general, ileostomy output is controlled in two ways. One is slowing down the gut and one is thickening output. In my case, we did both. The first was done via Imodium and the second was done via Metamucil.

Things were going well until Thursday when I had a very ugly pain day. It was a massive struggle to get my pain under control that day. My family and I have suspicions as to why it was a struggle, but that’s a story for a different day. On Friday, we talked to the resident working with my surgeon. We had the choice of trying to talk with pain management in the hospital that day, or being discharged and trying to work with pain management on our own. I opted to try and meet with pain management in the hospital. Pain management was never able to meet with us, but it turned out to be a good thing I was still in the hospital.

That Friday, my ileostomy output went nuts again, this time measuring over 2300 ml. I was all set on Saturday to be discharged until the surgeon on call came by and did his rounds. He came into my room and let me know that with that kind out output and the Florida heat, he couldn’t in good conscience discharge me. He said I’d be there until at least Monday. Thankfully, a tweak in my medication got my output back under control and I was discharged Monday morning.

That first Saturday I was in the hospital, when my surgeon told me about my increased output, he tried to explain what was going on. He said that for a small subset of people, when doctors mess with the bowel, their output just goes nuts. Apparently I belong to that small subset. Another instance of not doing things the easy way. And that’s the story of how an expected 2-3 day hospital stay turned into my longest hospital stay yet (12 days).

Surgery

Surgery went well and given what my surgeon told my mom, it was a success. He did find a staple from my last surgery and that’s likely what caused the fistula (as opposed to an abscess or infection). He did take a sample of something and send it off to pathology, but I don’t know to what extent that is standard operating procedure.

It’s 9:30 now and I’ll be heading to sleep in the next hour. The day began at 9 with one of those special showers with a special soap. Truthfully I didn’t sleep much since I made sure to get up every few hours to check my ostomy bag. We got to the hospital about 10:30 for a 12:30 surgery and by about 10:45 I was in preop getting prepped. Unfortunately with COVID, my mom couldn’t stay in preop with me. Preop in general didn’t take very long, but I was there awhile. The doctor using the OR ahead of me was running behind, so surgery got pushed back about an hour. While I was in preop, I got good drugs for the dehydration headache I had. In the end, they gave me some better drugs, to the point where I was drowsy and didn’t even notice when the nurse started my redials IV. Thankfully, they also used my port. Before they took me back to surgery, I did get to see my mom again.

Surgery went well enough that I do not have any new scars. They also did a flex sig to look at what’s left of my rectum as long I was already under. By 3:40 I was in recovery and by 4 I was well on my way to awake. My fairly low blood pressure kept me from getting pain meds for awhile (pain meds can lower blood pressure). Eventually it stabilized, even if it didn’t go up much. But my nurse started with low doses of dilaudid and had my blood pressure stayed stable, he gave me a bigger dose. It took a couple rounds of .2mg doses before I was comfortable. Unfortunately for me, it took awhile for me to get a room cleared and assigned on the appropriate floor and then to be transported up there. As a result, it was after 8pm before I finally got to see my mom again.

Tomorrow will include a visit by an ostomy nurse to check things over. Hopefully we’ll also be able to change my ostomy bag. The hospital used a two piece and I just hate two piece bags. They are so much harder with so much more tough plastic. I just don’t find the comfortable to wear. I was smart enough though to bring enough of my own supplies for a couple of bag changes.

I doubt I’ll be going home tomorrow, so the only question then is does the weekend push my discharge date to Monday or will I be discharged over the weekend.

One last piece of fun. In our family when you have a lengthy hospital stay or surgery, you get a stuffed animal. Here’s my new one.

Thursday’s Surgery

Edit: I wrote the below section last night. I had my pre admissions testing this morning and discovered the clinic lost my COVID test from Monday. As such, I had to have another one today. Yuck.

I have more details now on Thursday’s surgery. If all goes well, there will be no new incision. They will instead free my small intestine from where it exits my abdomen, resect the intestine down to where the fistula is, and then using the same stoma location, attach the new section of intestine to the abdomen. All that means I’ll have the same stoma location, but a new piece of intestine will be the stoma. The location part is great, as it’s a location that works fairly well. The new intestine part of the surgery means I’m in for an annoying 6-8 weeks as things heal. I’ll be back to measuring my stoma every time I have to change my bag. I’ll be more prone to leaks. Hopefully the same bag system I use now will be appropriate for the new stoma. It probably will, but there’s no guarantee.

Surgery itself shouldn’t be too long. The surgical resident I talked to today said I’ll spend more time in pre and post op than I will actually in surgery. Unsurprisingly, I do have to do a bowel prep. This time it’s a combination of magnesium citrate, dulcolax, antibiotics, and potassium. For a good chunk of tomorrow, I’m taking something every hour or two. At least my pre op testing appointment is early enough in the morning that I’ll be well home before I have to start prep. I’m on a liquid diet tomorrow to make the prep easier. It won’t be a particularly pleasant day, but I expected that. Anytime there is surgery done on the bowels, or where there’s a risk of injuring the bowels, doctors prescribe a bowel prep to completely empty the bowels of stool.

I should only be in the hospital a couple days. We’ll just have to wait and see how long it takes for my intestine to wake up and work as it should again. I’m hopeful that if surgery goes as it should that I won’t have a ton of pain. The biggest thing that could derail surgery is how much scar tissue I have. I’ve had two previous open abdominal surgeries so scar tissue is a potential problem. Scar tissue tends to make things stick together and that sticking could make it difficult to pull my intestine out of my current stoma location. If scar tissue were to make things tricky, then if would likely become yet another open surgery and a longer hospital stay.

This will be my third intestinal surgery in under two years. By comparison, this should be an easy surgery. I’m really not worried about this one. Even if it becomes an open surgery, I’ve been there before. I have the scars to prove it.

Two Years

Today is my “cancerversary.” Two years ago today, it was confirmed that I had stage iv colon cancer. By the point the final biopsy results came in, everyone was all but sure it was stage iv colon cancer. I honestly don’t think I’ll ever forget that week I spent in the hospital. It began on a Friday morning, when I woke up about 6am to go to the bathroom, only to find blood in my stool. My parents were already up and my dad working (he worked from home). My mom had had surgery #7 on her ankle only two days before and was still off work. My dad had a phone call that morning he couldn’t skip, so I drove my mom and I to the nearby ER – an ER unconnected to the main hospital. After all, you don’t go to the ER alone.

I drove my dad’s Jeep Grand Cherokee because its backseat could accommodate my mom’s wheelchair and we arrived about 7am. It was quiet, so it didn’t take long to be taken by to an ER room. My mom asked what they would do and I’ll never forget the nurse’s response. He told me they would likely do some blood work to make sure I wasn’t going to bleed out then send me home to follow up with a gastrointestinal doctor. What neither I, nor the nurse, knew is that the results of my pelvic ultrasound the day before strongly recommended a CT scan.

Even when an ER is quiet, running blood work and waiting for scan results takes time. I remember feeling pretty good overall and texting with a friend while in my little cubicle. About 8am, I got a phone call from my primary care doctor wanting to schedule that CT scan. I told her I was already in the ER and they were going to do it and she wished me luck. It took quite some time for the CT scan results to come in. We later learned that the doctor was on the phone with the GI department at the main hospital downtown. The doctor had called them because the CT scan revealed a spot on my liver the size of a walnut that hadn’t been on a CT scan done two months earlier. The group of doctors decided to admit me to the hospital to run tests and find out what was going on, rather than leave me to wait for my already scheduled GI appointment two weeks later. That was my first time in an ambulance – that I remember anyway. My mom then called my dad and together they figured out how to get my mom home from the ER and together get to the hospital downtown. That’s a funny story for another day.

I spent Saturday night trying desperately to get cleaned out well enough for a colonoscopy. It was a nightmare and that’s putting it mildly. The colonoscopy finally happened Sunday evening and the doctor couldn’t get very far. I was pretty out of it following the colonoscopy and didn’t ask much, but when the doctor told my parents they were able to ask questions. Although it was a presentation the doctor hadn’t seen before, he was pretty sure it was cancer. As my dad tells it, the doctor was visibly upset. During the colonoscopy, the doctor took several biopsies that would hopefully give us the answer.

On Monday, I had an MRI to get a better look at the liver spot. Prior to that MRI, I had no idea I was claustrophobic. Now I know, and for every MRI I get a Valium ahead of time. On Tuesday the biopsies came back as suspicious but inconclusive. As a result, they biopsied the liver spot that same day. Wednesday was a day of nervous waiting. Thursday afternoon the liver biopsy came back positive for colon cancer and by extension, stage IV. That was June 28th, 2018. The following day I had my port placed before being discharged.

I’ve thought a lot about that week in the two years since. I wrote at the time that I was grateful that none of my doctors tiptoed around the elephant in the room. Even before the final confirmation on the 28th, I was seeing an oncologist and a surgeon. The liver biopsy was simply a confirmation of what everyone knew. At the time, and now still, I was grateful that my doctors were frank about what was going on. It really set the tone for my future discussions with those doctors, especially as we all discovered that I did nothing the easy way. I really came to like my oncologist when I moved from Wisconsin to Florida and would recommend him to anyone.

I find I’m much more grateful for the milestones now than I was before my cancer diagnosis. This last Christmas meant so much more to me. It didn’t pass me by like so many others had before. I spent the Christmas before feeling like garbage and ultimately opened my Christmas presents while in the hospital. Next week will be my 3rd birthday since diagnosis and I will turn 35. Once upon a time, that round birthday might have bothered me, especially as I’m still single with nothing on the horizon. But now? Now I’m grateful to be here. My life isn’t perfect and cancer plus Lynch Syndrome have certainly left their problems behind. But two years after a stage iv cancer diagnosis, I’m still here and largely doing what I want.

Surgery, Again

I recently moved to Florida from Wisconsin and had to find a whole new set of doctors. In Wisconsin, I had a surgeon I saw for issues with my ileostomy. Interestingly enough, it is not gastrointestinal that deals with ostomies, even once they’re created and working well. No, for any GI issues once you have a stoma, it’s back to a colorectal surgeon. In my case, I hadn’t expected to need a colorectal surgeon in Florida. My stoma was working well. I expected to need an ostomy nurse to help with pouching issues from time, but that wasn’t a big deal. Unfortunately, I needed to find one.

Last fall, not long after I had surgery and received my new stoma, I developed what I now know was a fistula. It was pretty small and just the occasional bubble came out. My surgeon’s PA at the time didn’t think it was a big deal and at the time, my stoma wasn’t being active and so she couldn’t see it in action. Fast forward to the last few months and that hole has been more and more active. I have more and more stool coming out through that hole. In general terms, a fistula is an abnormal hole between two body parts. Mine is from my small intestine through my skin and comes out where my stoma meets my skin. I saw an awesome ostomy nurse last week, who has been an ostomy nurse for more than 30 years and she confirmed that what I have is a fistula. Unlike the last time I saw someone about it, the fistula was very active and she captured several good photographs. I then saw a local colorectal surgeon today and the pictures were good enough that I didn’t even have to take my bag off for him to get a look at my stoma.

The outcome of today’s appointment is that I need surgery to fix the fistula.We’re aiming for laparoscopic and outpatient surgery, but that may not be possible. I’m hoping it is, but we just don’t know. The surgery itself is considered a stoma revision. It will undoubtedly include pre-surgery bowel prep. Bowel prep really isn’t fun, but hopefully it’s just magnesium citrate. I handle that better than something like colonoscopy prep (they both have the same purpose – to completely clean out your bowels). I will approach the surgery as if it will be inpatient and bring a bag of hospital supplies – things like a robe, dvds, personal stuff. I’ve got the hospital bag routine down pat and I’ll just prepare like I’m going to be admitted.

I am tired of all my complications. Some days I feel like my life the last two years has just been one complication after another. Aside from this current complication, my ovarian fragment will also have to be addressed in the coming years. I’m on medication for it now, but the medication isn’t a long term solution. So in addition to my new surgery, I have what will be a fourth surgery on the not so distant horizon. I’ve already managed 8+ months without a hospital admission (and that may go up depending on when I actually have surgery), but now I’d like to go a year.