Rev. Joe’s Story

Site created on February 19, 2021

Over the course of 2020, Joe went from being a perfectly healthy and active priest in his mid-30s, with no prior medical history, to experiencing severe bouts of abdominal pain in March and April, right around the time that the COVID-19 pandemic hit. This eventually led to a diagnosis of ulcerative colitis in May, and the removal of a very inflamed gallbladder in June.  While his pain subsided, and his colitis became manageable with medication, further inspection of Joe's bile ducts after surgery revealed some "abnormalities." After several more scans and tests, and two additional surgical procedures, Joe was finally diagnosed with very early Stage I bile duct cancer (cholangiocarcinoma) in January 2021. 

Joe's particular form of cancer is caused by a rare autoimmune disease of the liver called primary sclerosing cholangitis (PSC), which sometimes occurs in people who have ulcerative colitis. No one knows what causes PSC, but it is understood to be genetic. Typically it is not detected until a person is in their late 40s or 50s, and while PSC can eventually lead to cancer, cirrhosis, and other liver and bile duct problems, it is extremely rare for cancer to develop this early, at the very onset of PSC. What's more, it is even rarer for any bile duct cancer to be detected at such an early stage - with no visible tumor or mass, and as far as we know, prior to any spread. PSC also normally shows up first in someone's liver numbers, after years of struggling with ulcerative colitis. As of right now, however, Joe's liver remains perfectly healthy and his numbers remain low. Joe's case is therefore exceedingly medically rare, on a number of levels. 

All of these factors actually work in Joe's favor, since there is a path for treatment that could effectively “cure” Joe of the PSC altogether, something that is usually not an option for people with this disease. Unfortunately, the treatment plan will require him to undergo a full liver transplant, in addition to 6 weeks of chemo and radiation. The reason for this is that even though Joe's liver is perfectly healthy right now, there is no other way to prevent the PSC from progressing, and there is no way to ensure that this very aggressive form of cancer will not return and spread to his liver. So the entire system must be replaced. 

An amazing interdisciplinary team of research doctors at Duke Hospital have taken on Joe's case, and we were fortunate to learn that Duke just so happens to be one of the top 3 research hospitals in the country for understanding and dealing with PSC-related treatments and transplants. While Joe's path to healing and recovery will be long, the doctors are very confident based on what they are seeing right now that he will come out the other side of all this. 


His treatment plan will occur several phases over the course of the next year: 

Phase 1: Chemo/Radiation (March-April): Joe will undergo 6 weeks of chemotherapy and radiation, in order to eliminate the cancer cells in his bile duct, along with any rogue cancer cells in his GI area.

Phase 2: Scans/Tests & More Chemo (April-June): After radiation is complete, Joe will have several tests and procedures to determine whether all of the cancer cells have been eliminated. Once that is confirmed, Joe will become eligible to get on the transplant list. They estimate his wait time will be approximately 4 months. During that time, he will remain on chemotherapy in order to make sure that the cancer does not return while he awaits his new liver. He will also be working hard during this time to regain his strength, so that his body will be prepared for the transplant.

Phase 3: Liver Transplant (Fall/Winter 2021??): Joe will receive a full liver transplant, which will get rid of his PSC-infested liver and bile ducts, and replace them with a liver and bile ducts that are PSC and cancer free.  The surgery itself will last 12 hours, and he will be in the hospital for 7-14 days. The call that they have an organ match for him and he is ready to go for surgery could come literally at any time, so we have to be "on call" at all times of the day and night, prepared to drive to Duke at a moment's notice for transplant. We were also told that there could be several "false alarms," where for a variety of reasons, the organ ends up going to someone else. In other words, the date and time for this major surgery will be extremely unpredictable. 

Phase 4: Recovery Period (Winter/Spring 2022): immediately following the transplant surgery, we will need to temporarily relocate to Durham for 30-45 days while Joe undergoes a number of follow-up tests and procedures to make sure that his body is accepting the new organ. This will be followed by 2-5 additional months of 24/7 care and recovery time, while Joe's immune system adjusts to the new liver, and his body slowly regains its strength. I can be that we will probably need a lot of assistance during these months!


Please click "Follow" if you would like to receive the latest updates on Joe's condition.  Also, please be aware that this is a FREE website and we do NOT need your financial support to "keep this page up and running," so PLEASE DO NOT GIVE MONEY TO THIS WEBSITE!  CaringBridge does not need your financial help and I apologize for the deceptive and unethical ways that they will keep trying to solicit money. Unfortunately, this was the best platform for communicating our updates to everyone. 


If you would like to make a financial donation that will directly support us, you can find a PayPal link under "Ways to Help." If you want to make a donation to another organization in honor of Joe, you can also find a list of legitimate nonprofit organizations that actually DO need financial support by clicking here:
https://www.caringbridge.org/visit/fatherjoe/journal/view/id/603fa77b82357a7c5f8b55f1


I will be providing updates through the "Journal" section about how Joe is doing and what sorts of help we need,  since this will change at different times as we move through the different phases of treatment. You can also sign up for days to pray for Joe on the "Planner" page, or leave a message for Joe in the "Well Wishes" section. 

Thank you all so much for your love and support. It means the world to us!!




Newest Update

Journal entry by Kristen Leigh Mitchell

Well folks, this is it! This will officially be our last post to Joe's CaringBridge page...(as far as we know)!!

This morning Joe had his 6-month follow up post-surgery, which included both a CT-Scan and MRI. This was an important milestone, marking the point in Joe's recovery where he is largely considered "out of the woods" in terms of some of the biggest post-surgery hurdles and risks. Of course, this does not mean that Joe's recovery journey is over, or that he is completely healed. Again, being a solid organ transplant recipient means a lifelong journey of healing and disease management.

For example, this week we learned that a viral strain called CMV was detected in Joe's blood. This is apparently something they anticipated and have been monitoring for, because the donor had been exposed to the virus but Joe had not (around 80% of people have been previously exposed to CMV and are immune to it, but Joe was... again... in the minority). It is fairly common for CMV to reactivate with a donor/recipient mismatch, particularly at the 6 month mark when the patient is taken off antivirals but is still on high doses of immune suppressants. Most people (including us!) have never even heard of CMV (the actual name is "cytomegalovirus"), because it is not dangerous for the general population. It can, however, become a problem in immune-suppressed individuals, possibly requiring hospitalization if it gets out of hand and starts to replicate and spread. We were reassured today that it is relatively easy to treat when detected in the early stages, and that Joe's current levels are still extremely low.  But it was just a reminder that the possibility of weird complications and having to deal with strange medical things that no one has never heard of is always now lurking in the background. 

Also, as some of you know, Joe had a bit of a rocky start with his return to work. Three days prior to his first Sunday back in church, a toothache sent him to the dentist, where he learned he had a fractured tooth in a back molar, which unfortunately had become infected. Dental surgery is discouraged in the first 6 months after transplant, but this was an urgent situation that could not be delayed, and so two days after Joe's return to the office, he had to go in for a major tooth extraction that put him out of commission for another week. Normally tooth infections clear up pretty quickly once a person is placed on an antibiotic, and especially once the tooth is pulled. But Joe's anti-rejection medications limit the effectiveness of antibiotics, and his weakened immune system means that it now takes him much longer to heal, even from minor cuts and scrapes. Also, due to interactions with his medications, he can no longer take anti-inflammatory pain medications like Ibuprofen. His only option for pain management is Tylenol, which as I'm sure some of you know has very limited effectiveness for pain from swollen gum tissue.

All of this has been a good reminder of just how much more fragile Joe's immune system is now. We often interact with people who have a tendency at this stage in the pandemic to want to reassure Joe by saying "Don't worry, we've already had COVID!" or "I'm vaccinated and boosted!" Everyone's anxiety around COVID-19 has been so heightened, that it's easy to forget that Joe is susceptible to everything - not just COVID but other viruses and bacterial infections (including the particularly nasty strain of Influenza A that's going around).  This is something that we have to keep reminding ourselves, especially as things begin to go back to normal. Events like the church Pentecost cookout, or the recent house blessing we did for my brother and his family, become occasions in which we have to remind ourselves (and others) that, for example, Joe can no longer eat from buffets or party plates set out on the counter. 

All of that being said, Joe is in incredibly good spirits, especially given all he's been through . He has now been back at work on a part-time basis for a full month, and is definitely starting to find his way into a new sort of rhythm.  He gets very tired, very quickly, and often it is still difficult for him to make it through two church services or an entire day's work without hitting a wall of exhaustion. Joe is an extrovert and loves being around people, but his energy is just not back to what it used to be yet. Fortunately he has part-time support until August.

In the meantime, we remain grateful that in the midst of all this, Joe has learned to take much better care of himself and to go easier on himself in general. This extremely humbling journey has basically forced him to become a wonderful example to all of us of self-love, and what it means to love ourselves as God loves us, trusting God enough to release the sense that we must earn our worth. Joe's journey is a reminder to rest in an authentic appreciation of the life we've been given - the good, the bad, and the ugly. 

For those of you who have not had the opportunity to hear Joe preach in a while, I commend to you all this sermon, preached by Joe on  Sunday, May 22nd. He talks a bit about this journey and what becoming a liver transplant recipient has taught him about grace: https://www.facebook.com/696715802/videos/1152148818939121 

Update on Casey
Since so many of you have been following Casey's journey of recovery and healing from her aortic blood clot, we wanted to offer a quick update on her status as well. We are happy to announce that this June marks Casey's 15th birthday, and while she still has some slight drag in her back right paw that requires her to wear a protective shoe when we go for walks on pavement, overall, Casey is in great health. Miraculously, she has made a full recovery from her relapse in January, and while she does seem more tired these days in general, she hasn't shown any signs of slowing down, and still enjoys long walks around the neighborhood, on the trails of Uwharrie Forest, and at her favorite spot in Franklinville that we've come to call "Casey Grove." 

It's surprisingly easy sometimes to underestimate the toll that the last year has taken on our minds, bodies, and spirits. All three of us have some form of PTSD, and we all have a tendency to overestimate how far we can go these days without crashing. I often take Casey for long walks where we both find ourselves slowly huffing and puffing our way back to the car. I managed to gain considerable weight and get very out of shape in the last 7 months, as I have battled with anxiety and learning to release myself of my caretaking role and my overactive sense of responsibility, and accept that some things are beyond my control. Joe has started a new form of neurocognitive therapy called brainspotting, that is helping him to heal from all the anxiety and stress that was activated for him during the last two years. And Casey is clearly trauma-bonded to Joe, as everyone at Good Shepherd has noticed over the last few weeks. She needs to know where he is at all times, and follows him everywhere... even to the bathroom, where she will sit patiently outside the door, guarding and waiting until he's done. It's very adorable. 

Yes we are exhausted, but we made it through this, and our relationship is that much stronger for it. We have managed to keep our wits about us and maintain our sense of humor, and we have been surrounded and supported by so many loving and caring people, who have encouraged us to lower our expectations of ourselves and have helped us to fill in the gaps as we slowly find our way back to a routine and some semblance of normalcy.  It is a good reminder of the importance of community. No one gets through this sort of thing alone. It truly takes a village, and we are grateful that CaringBridge has allowed us to stay connected to a very large village. Y'all have been our rock!! 

Stay in Touch
For those of you who have been following us primarily on CaringBridge but would like to stay in touch after we sign off from this site, please feel free to connect with us on social media:

Facebook
Joe's Facebook Page: https://www.facebook.com/jtmitchell5
Kristen's Facebook Page: https://www.facebook.com/kristenleighmitchell

Instagram
Joe's Instagram: https://www.instagram.com/jtmitchell5
Kristen's Instagram: https://www.instagram.com/kristenleighmitchell

Blogs
Joe's Sermon Archive: http://fatherprime.blogspot.com
Kristen's (upcoming) Blog: www.thoughtstransfigured.com 

Finally, we want to remind you, one last time, to please not give money to CaringBridge! We know that you want to support us (and so many of you have), but donations to CaringBridge DO NOT go to the people making the posts, but instead to a company that by no means is hard up for cash.  We are grateful to everyone who has leant their support, financially and otherwise.

So, until we see each other again, may all of you be held in the palm of God's hand. Onward and upward!

Kristen, Joe+, and Casey

 

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