Tag: fistula

Posted on by John Clark

Spring Update

We’ve been a little busy these past few months adjusting to life with little Poppy. Harry, Daisy, and Magnolia have been a great help, always eager to lend a hand. I haven’t been as helpful as I would have liked to be due to chemotherapy and the symptoms caused by the treatments.

I have survived nine chemotherapy treatments so far this year and they still seem to be working. Since my diagnosis, I think I have had over thirty treatments. 

I had another CT scan back on March 30 which confirmed that the latest rounds of chemotherapy are working. The lesions in my lungs and liver have decreased in size again.

A few weeks ago I had my first dose of the COVID-19 vaccine. My oncologist provided me with a nice little letter to prove that I am one of those High Risk folk. I am glad I was able to be vaccinated already, not only for my own sake, but also because I believe it is my biblical and civic duty to do so. I will be receiving my second dose early in June. 

My diarrhea is more under control now with the new medication and activated charcoal I am taking. I had come to the point where I only had about two normal days between treatments, which was not a great “quality of life.” Even eating was becoming difficult. My oncologist was kind enough to let me skip a treatment just to give my body a bit of a break and time to gain some more weight.

That brings me to last week’s excitement. Remember my ostomy incision that wouldn’t heal? Well, the wound finally closed up a few weeks ago but in the last week it decided to fill up with fluid. Last Friday, instead of having my regular chemotherapy treatment I had an ultrasound so the doctors could have a good look at my new abscess. It was only on the surface so it was in no real danger of bursting inside me and causing more problems. I was scheduled to see my surgeon a few days later to drain the abscess but it popped open on its own the next day. This was great as the pain went away as soon as the wound opened up again. I still met with the surgeon and he confirmed it’s probably caused by my fistula that is having trouble healing due to my chemotherapy drugs. It still might eventually heal on its own. To fix the fistula the surgeon would have to do a “main line incision.” The risk of that kind of surgery is not really worth the minor inconvenience of bandaging my open wound everyday. Essentially this means that my wound is not going to go away any time soon, and if it does heal over it’s likely I will get another abscess. (I think I’ll try popping it myself next time.) Anyway, I am just going to carry on with my wound as is and pray that the fistula fixes itself.

On the plus side, I got another break from chemo. On the downside, I got another break from chemo.

I have no hair anymore. Well, that’s not entirely accurate as there is a little bit left on my arms and a sprinkling left on my legs and chest. When I started treatment again back in January I shaved half my chest to make accessing my port (and the subsequent taping me up) less painful. The other side (the unshaved part) of my chest now matches perfectly. I had to shave my head again as the patchiness was starting to look ridiculous.

I’m still hoping to have another break from chemo at the end of June. Hopefully these unexpected breaks won’t change that schedule.

Please continue to pray for us.

  1. Thank God that the chemotherapy is still working and pray that it continues to do so. 
  2. Pray that my fistula heals.
  3. Pray for Leanne as she looks after everyone.
Posted on by John Clark

August

Summary: I still have a drain and my stoma incision is leaking, but God is good and I feel fine.

  1. The Hospital
  2. The Oncologist
  3. The ER
  4. The Surgeon
  5. Hubert
  6. Pray

The Hospital

I wasn’t expecting to be released from the hospital so soon. The Saturday night before my release I was laying in my bed praying and contemplating how many more days I would spend away from my family when my doctor showed up. Normally I get a visit from a doctor in the morning, never in the evening, so I was quite surprised by this visit. I was even more surprised and overjoyed when the doctor told me he was going to send me home in the morning.

I felt pretty good. My drains hurt when I moved but that was about it.

I was home Sunday afternoon and it was wonderful.

The Oncologist

I met with my oncologist last Wednesday, August 19. Prior to my appointment I had to get blood work done which meant a long walk across the hospital and back for me and my drains. I made it, although it took awhile. My oncologist has booked me in for a CT scan on September 16, and on September 18 we’ll discuss the results. If things are good, he may keep me off chemo for awhile longer.

The ER

Last Friday, August 21, my home care nurse (who is awesome by the way) told me to go to the ER. She was concerned about the increased volume of fluid that was coming out of my stoma incision. She discussed my case with one of the doctors she works with and they suspected I had a fistula. I got to the hospital around 1pm and they eventually gave me a CT scan to see if there were any issues. The CT scan was good. They were concerned there could be a new pocket of fluid beneath my stoma incision that was causing the increased stoma site drainage but there was not. They still suspected I had a fistula but they can’t tell that from a CT scan. There was nothing urgently wrong with me so after waiting around a couple more hours for a surgeon to review my case they did eventually send me home! I had a nice private room and bathroom for most of the day in the ER but then they decided I wasn’t sick enough to justify a bed so they made me sit in an uncomfortable chair while I waited for the surgeon. I spent 12 hours in the ER that day but that’s ok because they sent me home. I had leftovers from Daisy and Magnolia’s birthday party that I missed when I got home at 1am.

The Surgeon

On Thursday, August 27, I had my follow-up appointment with my surgeon (from my ostomy reversal). He said that my left drain could come out but he wanted to leave my right drain in as he saw a little more fluid on my right side in last week’s ER CT scan. He also confirmed I had a little fistula and that it should clear up on its own, although slowly. I have an in-person appointment with him next Thursday, September 3. I have an ostomy bag over my stoma incision right now just to catch all the not-so-nice smelling fluid that is leaking from the incision. The amount went from around 60mL/day to now around 5mL/day. My right drain has been immeasurably low (0mL) for over a week now. I expect the surgeon will order the removal of my right drain when I see him this week.

I was taking Tylenol earlier last week but I haven’t had enough pain to warrant any sort of pain medication for quite a while now. My right drain site still hurts a bit but I am moving around a lot more than in previous weeks.

I just wish I could have a shower. I am long overdue.

Hubert

In case any of you are not on the Facebook, Leanne and I are having another baby who is due March 1, 2021. To continue my father’s tradition of assigning a prenatal pseudonym to new babies, this baby will henceforth be referred to as Hubert until we are sure about the gender or the baby is born. Hubert was unplanned, at least by us. We always wanted a fourth little munchkin (I don’t like odd numbers) and despite my condition we were seriously considering having another one back in February. Those dreams were quickly shattered when we were told my cancer was growing again, which caused us to make the difficult decision that we were done having children. We were so sure about it that we immediately went out and got a dog and started giving away the baby stuff.

Apparently our plan differed slightly from God’s plan because we experienced a minor birth control issue on ovulation day. It’s actually rather surprising we got pregnant at all because apparently it’s common for chemotherapy patients to struggle with infertility. Not me! 

According to the manufacturers of my chemotherapy medication, pregnancy is not a good idea while using said drugs. However, we could not find any data that says why it’s not a good idea. Even my oncologist didn’t have any answers. I think the lack of data is related to the typical age of people with cancer. We are going to do a little extra non-invasive testing with this pregnancy just so we have as much data as possible if there are any issues with little Hubert’s health. We are so happy and thankful to God for this new life!

Pray

Thank you for all your prayers. From getting my drains installed sooner than expected to being released from the hospital, God has answered our prayers.

  • Please pray that my fistula would heal on its own and heal quickly.
  • Pray that my CT scan will justify a further extension of my chemotherapy break.
  • Pray for Leanne. She has been doing so much for me this past month while fighting through her first trimester nausea. She is feeling better now that she is in her second trimester. Pray for strength for her as she soldiers through this pregnancy while dealing with my health issues and homeschooling our children.
  • Pray for little Hubert. Pray for his (or her) health and that my chemotherapy drugs will not have any affect on him.