Hello everyone! It has been a while since I last updated everyone on this blog. I have talked with some people, but have not posted in a while; sorry about that.
As of this writing, it has been 90 days since surgery! WOW! I can’t believe it has been 90 days! So much has happened during these past 90 days.
I am learning how to live with the ileostomy bag pretty well, or as we call it, Bobby Lee. At times, it has been pretty convenient. What I mean is I don’t have to sit on public toilets, if you get my drift! Typical bathroom trips are quicker now! 🙂 By the way, this post might be TMI for some!
Downside #1: The food restrictions (no fresh fruits and veggies, no nuts, seeds, gassy foods, etc.) and watching what I eat. Overall, it’s not too bad, but it can be frustrating at a restaurant. Some people have it way worse, I get it. Another downside is doing the bag change every three days. Anna has been a huge trooper and support in this process. I get up early and go have my ‘breakfast’ of 8 marshmallows. The marshmallows help slow the output, usually. We found that 45 mins after eating ‘breakfast’, changing the bag is better. Anna has words to say to Bobby Lee when she’s trying to change the bag, and he’s too active.
Downside #2: The clothing. We had to get a few new things to help me be a bit more comfortable and help the bag to not be too noticeable from the outside. They make bands for ileostomy bags, but they won’t seem to work well with the belt I have to wear, which attaches to my bag to lift my stoma in the bag. I am not a fan of getting new clothes because of the cost, but it was a must. I have some cool new things I can keep wearing after Bob Lee is gone.
Downside #3: I can’t wrestle as much with Josiah. Josiah and I love to roughhouse. We have found ways to continue this bonding time, but it is not as intense as it once was. Josiah is as careful as he can be but Bob Lee has been kicked a few times and that ends the time. Yeah, that kind of hurts.
These downsides are not too bad, just an inconvenience more than anything. These are better than the alternative.
As for the test results, I believe in the last post I mentioned the pathology report came back looking really good. They took 18 lymph nodes out and tested them, and they were all negative for cancer cells!
The surgeon also told me at my post op that the tumor was the size of a thumbnail and had clean edges. This would also indicate the tumor had not spread. They even downgraded Bruno to a T1, basically a polyp.
When I visited the oncologist, she ordered two blood tests: a CEA test and a ctDNA test.
I learned that the ctDNA blood test is becoming the gold standard in cancer detection. It is a newer blood test. In fact, it is so new that insurance companies are not covering it, as they still consider it ‘experimental.’ I saw the bill for insurance and it was $8,000! I have not paid anything for it yet, and hopefully won’t have to!
The results from both blood tests came back NEGATIVE!!!!
The onlogist gave me the option to do one or two rounds of chemo if I wanted to as a precautionary. She talked with her collegues at OHSU Main Campus and half of them said to do chemo and the others said no chemo. Basically there is no hard line on what to do and give it to the patient to decide.
With much prayer, Anna and I felt it was okay to skip the chemo treatments based on the news on the blood work and the pathology report. Plus, I will be watched for the next five years very closely, so if something does pop up, it will be addressed quickly!
Next steps:
I have a scheduled barium enema on April 28. This is to make sure the first surgery reconnection is holding and is ‘water tight’.
If everything looks good, then on May 13, I will have the reversal surgery of the ileostomy. Bob Lee will be put back inside.
The surgeon has told me that this next surgery is a walk in the park compared to the first. My first surgery on a scale of 1-10 was a 9.5! This next one is a 1.5 on that same scale. He even mentioned that his hands never go inside me. I will be under general anesthesia for roughly 90 minutes. Once surgery is completed, I will go home the next day, Lord willing!
The doctor is having me take 6 weeks off work to heal and for my body to regulate again.
The Lord has been so good to my family and me during this time. I am blown away at the love and support from so many people. I am so glad to have found ‘Bruno’ when we did. As my sister Lizzie said, “Bruno and his offspring are dead!” The Lord is using this experience now and will continue to use it later in my life. I am not sure what the future holds but I know that in His hands is the best place to be.
Thank you for your love and support, and I will post again soon!
Into The Mind of Josh 
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