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Oncology 23.1

A lot has happened since I last updated this blog. I have spent time in hospital and I have had all sorts of investigations.

Firstly, I don’t have a gastric ulcer, which was where I left things off in the last post. I had the gastroscopy, and it showed a perfectly normal looking mucosa lining my stomach. It did however suggest that the stomach and the first part of the duodenum are bigger than normal, so it was decided I should have a barium swallow to investigate further since I still had symptoms of pain, nausea, and vomiting.

The barium swallow showed a hugely distended stomach as well as the first 2 parts of the duodenum. The barium only partially moved beyond D3 (3rd part of duodenum), indicating that there was a partial obstruction at that location. We didn’t know how long or narrow that obstruction was though.

It was decided that using a duodenoscope, a gastroenterologist would get down to the obstruction and pass a cannula through it injecting contrast under fluoroscopy (x-ray guidance) in order the characterise it’s nature. An intrinsic obstruction might suggest stricture from radiation, or perhaps even adhesions from multiple previous surgeries. An extrinsic obstruction might suggest there was a lymph node or a mass pressing onto the duodenum from outside the gut and compressing it. It ended up being unclear, but it seemed more likely to be a radiation stricture than anything else, so a stent was inserted in order to open up that part of the gut again. This was all done under the same proceduce, although it was the second attempt as I didn’t tolerate the procedure well the first time under light sedation. The second time was done under a proper general anaesthetic.

That was done last Tuesday morning, and in the afternoon, I developed severe new onset right upper quadrant pain in my abdomen, with pain radiating to my right shoulder. It was unclear what the cause of this pain was, but I was x-rayed as perforation is a potential complication of stent insertion. The x-ray showed no evidence of free air in my peritoneum, reassuring us that it was unlikely to be a perforation. It also showed that the stent was open and patent, which was good news. The pain continued through the night and I soaked up some industrial levels of pain relievers in order to be comfortable. It was decided not to investigate further as the pain on the whole was improving the next day and I was able to eat and drink again for the first time in 3 weeks without vomiting. During that time I had been put on TPN (Total Paraenteral Nutrition), which is IV nutrition, in order to prevent me from getting malnourished and from deconditioning any further.

I was discharged on Friday, with a working stent and a new lease on life…. or so I thought.

One of my last blood tests in the hospital showed that my bilirubin had jumped from 12 to 51 within a day, and this had been overlooked. I noticed the result on my discharge summary that night after getting home and thought it was a bit odd. On Saturday morning, sure enough, Hannah noticed that the whites in my eyes were going yellow. I had Jaundice.

So on Monday, I was readmitted back to hospital with obstructive jaundice and a bilirubin of 95. My skin is now starting to turn yellow.

One of the risks of obstructive jaundice is that it can potentially become septic. This is called choleangitis and it is usually characterised by aggressive sepsis and septic shock. It is life threatening.

Today I had a CT scan to try and help find the cause of whatever is causing the obstruction of my bile getting from my liver into my gut. The scan showed both intra and extra-hepatic duct dilation, suggesting there is an obstruction outside of the liver, but it didn’t identify what that obstruction is, i.e. is it malignent, or stent related etc. The stent is however up against the ampulla, so could be contributing to the problem. The gastroenterologists have decided to go ahead and do an ERCP (endoscopic retrograde cholangiopancreatograph) this thursday to see if they can identify the cause, and then hopefully relieve the obstruction. This would be a best case scenario, as the alternative would be to go and put in a PTC tube (percutaneous transhepatic cholangiostomy), where they put a tube from your skin, into the liver, and then into the bile ducts to relieve the obstruction from behind. This is not an ideal solution as it doesn’t actually fix the source of the obstruction, it just relieves it (and that tube stays there to continually drain it).

So, I am in hospital , waiting for the ERCP under another general anaesthetic this Thursday and hoping it will fix the jaundice. Then, I can go back on chemo and try to get some stability back into my life again. 🙂

I shall keep you all updated as things progress…

  1. Ctz
    July 22, 2014 at 8:08 pm

    Hello Jared-Praying from Vancouver, Canada for an improvement with this present health challenge.I always look forward to your blogs on your current condition and life with your family …with the usual parting line ‘until next time’:). God bless!

  2. July 22, 2014 at 8:55 pm

    what a journey jared and hannah! continuing to pray for you all!

  3. Chant
    July 22, 2014 at 10:12 pm

    Praying for your recovery, keep fighting!! My late brother went through what you going right now. It was so painful to go through the journey with him. God bless u and ur family

  4. July 22, 2014 at 10:27 pm

    Every time I visit your blog for updates I come away amazed at the courage and resilience of you and your family. Wishing you well for Thursday and hoping for the best possible outcome.

  5. Theresa
    July 22, 2014 at 10:31 pm

    Jared no words really just oh my goodness what a complex painful situation- with your medical knowledge and all — good luck hanging in there at hospital. Hope Elise is a good cute distraction. Prayers & thoughts Theresa

  6. Bob Soper
    July 22, 2014 at 10:56 pm

    Hi Jared. I have been following your progress for a long time now and have been delighted as you reach your personal milestones. In spite of what you are going through at this time I believe things will improve for you and yours.. As a bowel cancer survivor myself who has been in the depths of despair and has arisen again as things improved I understand the discomfort you are going through on this present journey. I always believe that things can only get better and after a time the discomfort and pain you are currently experiencing will fade in your memory and be replaced by the joy of your family. I am wondering how the money is holding out. Give-a-little was amazing last time. When the time comes we and many 1000’s of others are ready to give again so at least that worry is taken off your shoulders. Hopefully your friend who organised it last time will be prepared again to tell your friends out here when the time to give is. Although we have never met I feel I know you well enough to try and give you some encouragement to fight the good fight. All the best to you and yours, Bob Soper Auckland.

    • July 26, 2014 at 8:06 pm

      Hi Bob, the give a little money is still holding up at this stage, it really depends on how long I will require treatment for. The actual link and page is still active though for those who would like to donate more. If you search my name on the give a little site, it should come up.

  7. July 22, 2014 at 11:32 pm

    You are always, always, always in our thoughts x

  8. July 23, 2014 at 12:56 am

    Hi Jared,

    I’m very sorry to read that you have had such a horrible time lately.
    You are a real fighter and I’m sure all your loved ones are very proud of your courage & commitment.
    May you feel better soon and return to your family at home for more precious time and memories.

    All the best,

  9. Andrea
    July 23, 2014 at 1:10 am

    Hi Jared, I’ve just been reading about you and your beautiful family in ‘Oh Baby’ magazine. A tremendous letter to your daughter, what a gift. I send you hope even on the darkest day, know that people are thinking of you.

  10. Rob Hart
    July 23, 2014 at 10:51 am

    Jared, You’re amazing. I thank and praise the Lord for the resilience he has given you and your wife through this all. I know you do have your down times which is completely understandable but you always bounce back. Thank you for your inspiration.

  11. Jo
    July 23, 2014 at 12:26 pm

    Sending lots of good healing vibes and wishing you well!

  12. Linda Marriott
    July 23, 2014 at 12:55 pm

    Hi Jared – you are one amazing man. Through all your trials you have been positive. We will carry on praying for you and your gorgeous girls.. We often wonder what God’s will is but be assured His ways aren’t our ways and He is still on the throne. Our love and prayers always.

  13. Maree
    July 23, 2014 at 2:05 pm

    Hi Jared, our homegroup are meeting this evening and we will pray specifically about the ERCP tomorrow and that they can identify and rectify the cause of this. I pray you will feel better very soon. In our thoughts and prayers, much love, Maree xx

  14. Dyana Parore-Connell
    July 23, 2014 at 4:45 pm

    Hi Jared. Thanks for update. What a complex journey you going through now. Trust Thursday will give you some positive feedback and an answer to help you overcome all that you have mentioned. Thinking of you and Hannah. God bless

  15. July 23, 2014 at 9:40 pm

    Wishing you all the best for tomorrow.

  16. ram
    July 24, 2014 at 2:19 am

    Hi Jared tnite i watched your story on 20/20 and it moved my heart to find you on the internet. You have inspired me gqgeatly with your courage and strength. I sufer with ocd, cyclothymia, type 2 diabetes and hashimotos disease and on some days i get down thinking about what i cant do. But looking at your story and your courage and passion to live your life as fully as posible put tears in my eyes and a lump in my throat making me realise life is what you make of it and to make it as good as you can. So many of us get caught up in the what ifs and regrets like myself and in the process forget to live the life we have. Thanks to you for reminding me of this. You will be in my prayers alng with your courageous wife and darling baby Elise.

    Much respect god bless Ramarie
    : )

  17. Lynley Brown
    July 24, 2014 at 7:57 am

    Hi Jared, I also watched 20/20 last night and I’ve gotta say your courage and positivity is infectious (please excuse the pun). All the best today and for continuing treatment. Will be thinking of you and the family.

  18. Greg
    July 24, 2014 at 11:06 am

    Chin up Jarred you a miracle. Keep up the good fight.

  19. Ben
    July 25, 2014 at 9:22 am

    Good luck dude

  20. Michelle
    July 26, 2014 at 7:49 am

    I saw you on 20/20, what a fighter! You are an inspiration to everyone. Your blogs are wonderful – thank you for sharing your experiences with us. Keep up the good attitude – it will make you a winner! You have a lovely family – my wishes to you all.

  21. January 21, 2015 at 10:52 pm

    My prayers are with you jared.. I lost my sister for bowel cancer 😦 .. you are an inspiration to everyone : http://colorectal-surgeon.com.au

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