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1/1/2017 Latest post:
I will make a long story short and continue details later as I've always wanted to journal my story, most especially the spiritual side of things for that is the one secure promise I have as we state every mass in the Nicene Creed, "I believe in the Communion of Saints, the resurrection of the body, and the life everlasting." I am not promised I will survive this disease, or that I will even survive today, but I am promised eternal life through Christ our Lord. This promise is what I cling to and beg for Divine Mercy to get me through each second of my life. My intention in journaling is to provide hope, comfort, and peace for anyone who can find God's grace and comfort through my difficult journey. To see that in my weakness it is He that is strong.
Short version: Colonoscopy June 11, 2015. CT scan June 18th, 1cm nodule in right lung, cannot exclude metastatic cancer but is looking more like something else. Surgery July 8, 2015 at Fremont Health with Dr. Adam Pentel. July 13th (ish) another surgery found a tiny leak in the reanastomosis site. Incision from just above belly button to top of pubic bone area, NG tube for 5 days, and TPN through a PICC line for about 4 days. Oh but I woke up with an epidural. July 21st I was discharged from the hospital. July 22nd was told Stage 3b (2 lymph nodes out of 34 positive for cancer). PET scan in mid August found the lung nodule to be still hot, subcarinal lymph node very hot, and a right hilar lymph node hot. Report stated "most likely metastatic colon cancer." Met with Dr. Grem at UNMC for another opinion as Fremont oncologist was not a good match for me. Loved Dr. Grem and CT done at UNMC showed nodule maybe smaller? Things looked more promising and CEA level went from 4.7 prior to diagnosis to 0.6 at the time of PET scan.
Trip to Reno, NV to see alternative oncologist in late August and 3 week infusions through a PICC line 3 weeks of September. Follow up with Dr. Grem at UNMC and lung nodule still suspicious, maybe slightly larger now and something found on liver that is more concerning. (although it was apparently there back in Sept. so I don't get why it was not concerning back then or if they just honestly missed it. MRI done on liver showed it was just some blood vessels, thank God! Lung biopsy done at Clarkson Hospital in October (CT guided, hold your breath while they poke a needle in between ribs to get a sample of lung tissue) and that was found to be "Inflammatory Granuloma." Negative for fungal and some other things so no definitive on what it is.....just "not malignant." Hard for a detail oriented knowing what this is to put my mind at ease person. Still worried it is cancer and they missed the cancerous part. Sorry, I just don't trust humans, as crazy as it sounds....just have heard of doctors being wrong before.
Traditional dose Xeloda started and I discontinued January of 2016. CT scan showed everything stable. Went on watch mode with tumor marker checks every 3 months. They all have been very low. CT scan and colonoscopy moved to December instead of January because of deductible and vacation planned. CEA, colonoscopy have good reports.....CT scan shows same lung nodule slightly larger (by .5cm I think). Subcarinal lymph node has now tripled in size since last year....very suggestive of cancer growth. Hilar lymph nodes also enlarged. Meeting with thoracic surgeon December 28th to set up biopsy of lymph node through bronchoscopy.
More detailed and reflective version begins here:
I had been suspecting something was seriously wrong with me, and not to gross anyone out but a friend of mine, Carrie Trutna always said, "it's all about poop." That is true, something was not normal with mine. I asked a friend of mine who is an OBGYN for a fecal occult kit. She was surprised but agreed saying if it made me feel better. At 38 one is "too young" to have colon cancer. I never really thought of colon cancer...at this point in my life cancer is cancer. Never thought about it much, especially details of it, like where it starts, how advanced is it, etc. On our way to see Fr. Olsen, our spiritual director, Dr. Karen and I stopped at Pizza Hut in Hartington to pick up lunch. I noticed a flyer for a fundraiser for a young mom with a few young children and she was battling colon cancer. This wave of realization engulfed me...yup, this is my problem, this is what I have. I have learned from a young age that each of us has a guardian angel to accompany us through life from the moment we are conceived until our soul is separated from our body at death. Well I do believe my Guardian Angel whom I now refer to as Peregrine told me that I had colon cancer. See, I'm not one for going to the doctor. I absolutely hate it, the mere thought of a needle makes my skin turn white and dizziness sets in. Good thing I tried to go to nursing school a few years back in the hopes of being a nurse at a future clinic located in the vacant Lazlow's building that will be called "Our Lady's Healthcare Center." Interesting that finally after many years of vacancy it will open soon as an Orthopedic Clinic....so it has been converted to a doctor's office. I dropped out of nursing school on the first day but I had tried so hard the year prior and during my A&P class, and CNA training to overcome needle phobia. I even gave a friend of mine a progesterone shot! Well good thing as Hannah was diagnosed with type 1 diabetes in January of 2014. As the poor girl freaked out about having a blood draw on the way to the doctor's office, I tried to console her by saying, "it is just one blood draw...at least you aren't diabetic, they have to get poked all the time!" I must be good haphazardly diagnosing things because riding the elevator at Children's for one of her check ups we face a picture of a beautiful, hairless, young child who had cancer (there are pictures of patients in all elevators I have been in there). In consolation of our situation to give myself perspective I said to Hannah and Trent, "well it could be worse, at least we don't have cancer." If I only knew there was a malignant adenocarcinoma in my transverse colon at that time, probably quite large by that day because about 1 year 6 months later it would be discovered to not only be present but was a little larger than a golf ball. Oh, and there was the time about 4 years ago where Hannah's head itched and I nonchalantly said, "maybe you have head lice" as I sent her off to the shower. Okay after being right about head lice, diabetes, and now cancer I'm done saying stuff. Been trying a different approach..."well at least we haven't won the lottery!"
After two positive fecal occult tests I earned the privilege of having my first colonoscopy at the ripe old age of 38. My friend Dr. Karen came with me as we have this friendship policy of accompanying each other for medical procedures and we even go to the dentist together!! She recommended Dr. Adams in Fremont, not for his kind bedside manners, but for his expertise and experience. The procedure itself was over his lunch break on Dr. Karen's day off (busy, accommodating doctors) and I was extremely freaked out as we waited in the procedure room for him to arrive. Little did I know things were about to get worse. The medicine worked very well and the next thing I knew I heard the words, "Well we found a golf ball sized mass in your transverse colon and it is probably cancer." Thanks to good sedation meds I gave him a thumbs up and casually said, "thanks, that is what I thought." My friend later confirmed this is exactly what I did. I was totally calm and okay with this diagnosis until the meds wore off.