Johnny Brown Johnny Brown's Journey

First post: Oct 6, 2016 Latest post: Nov 8, 2016
     Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
     I guess, to bring everyone up to speed, I need to start at the beginning. John and I both retired from being nurses at the prison in Hutchinson in May of this year. His last day was May 27th.  On May 28th, started moving to a little town in southeast Kansas, Moran, population 544. My sister and her husband, Kathy and Mike McEwan have lived here for 22 years, and our youngest daughter, Mindy and her daughter, Lily settled here as well a year ago. We are only about 1 hour from John's Mom and sister, Joyce, who both live i n Coffeyville, KS, so we are much closer to them.  We were ready to start our retirement!
     We got a contract on our house in Hutchinson that fell through before we could close, and those of you who know John know he is a worry-wart. So, he started some big-time worrying about the house not selling as fast as he thought it should. So, we went through July and he was beginning to not feel so well, and then he started having dark, tarry stools (I know.....too much info!) and began just feeling weak and short of breath, lightheaded and at times started having chest pain associated with activity. Being nurses, we both immediately thought he probably had an upper GI bleed due to a stress ulcer caused by his excessive worry. And the shortness of breath, lightheadedness and chest pain was most likely due to anemia caused by the GI bleed. Makes perfect sense, right?  Well, we had not established with a physician in this area as of yet, and since we are both Cherokee tribal members, we drove down to Vinita, Oklahoma (about 1 1/2 hours away) to establish care at the Cherokee Nation Health Center there. They were very good to us and agreed that we had most likely made the correct self diagnosis. Lab work was done, which all looked fantastic except for a Hgb. of 8.4, which proved that he had severe anemia. He was started on Prilosec, Zoloft for his anxiety and iron pills. We went back 10 days later, August 16th and his labs were looking better, and he was feeling better, so we felt encouraged and continued the medication regimen.
     Sept. 7th, I was not home, because I was babysitting my sister, Kathy, after her wrist surgery. When I got home that evening, John told me he had "passed out" in the garage while I was gone. I asked him why he didn't call me immediately and he said, "I came to." Typical JB. (Shaking my head) Then, later that evening, he told me his stools were black again. I decided we couldn't afford to only have the Indian Clinic as our primary care, 1 1/2 hours away. I made an appointment with Dr. Brian Neely in Iola to establish as our primary physician. We saw him August 12th. While we were there, he did lab work to see how the Hgb was doing. It  was low again. John happened to mention that he had felt "a knot" in his upper left abdomen, so Dr. Neely examined him and indeed, there was a large abdominal mass there. He immediately set him up for an ultrasound of the abdomen on Sept. 16th. I was sitting in the ultrasound room with him and saw the large mass. It didn't look good to me and sure enough, the tech asked us to wait in the waiting room after the ultrasound until the radiologist arrived and looked at it. I told John I figured they would want to do a CT scan of the abdomen and sure enough, they did. We had the ultrasound at 8 am that morning, and were at the hospital until nearly noon before they were finished with him. We were told our doctor would call us within 4-5 days with the report. Dr. Neely had some samples of a new diabetes med he wanted me to try, so we drove to his office to pick it up. By the time we got there, the radiologist had already called Dr. Neely and so Dr. Neely asked to see us both. That day, he told us it looked like John had cancer and that it looked consistent with some type of lymphoma. We went the next week to see the surgeon, Dr. Hall in Ft. Scott. He wanted to have a CT-guided biopsy done, but it had to be postponed for 7 days because John takes 81mg aspirin daily and it could cause him to bleed out with the biopsy. So we stopped the aspirin and waited a week. 
     On Sept. 27th, he had the CT-guided biopsy done. We went the next day to see the oncologist in Iola, but that really turned out to be a worthless visit, because the Dr. did not have the results of the biopsy yet, and so could not really tell us what kind of cancer it was, what the treatment would be, etc. On Friday evening, Sept. 30th, Dr. Neely called  us with the results of the biopsy. It is B-cell Non-Hodgkins lymphoma. THAT was truly and answer to our prayers, because even though is IS a malignant cancer, and an agressive one, it IS treatable and sometimes even curable.  We slept well that night, for the first time in a long time. 
     Today, Oct. 5th, we saw our oncologist, Dr. Iqbal who went over what to expect next. He had John do lab work today. He also ordered a Portacath to be placed, a bone marrow biopsy, an echocardiogram, a colonoscopy and an EGD (a scope to go down his esophagus into the stomach to look for ulcers). Also, a PET scan. These tests will allow Dr. Iqbal to "stage" the cancer. We are thinking probably a Stage III or Stage IV. Treatment is the same, It will just let us know how many rounds of chemo and radiation he will need. The chemo drugs that will be used are very agressive and will most likely make John very sick. He will lose his hair. He will need to be careful about being around sick people and small children that could make him sick because his immune system will be knocked out. But, it is his decision to go ahead with treatment because it IS treatable and PERHAPS curable. So, I hope you all will continue to lift him up in prayer, and send him good wishes as often as you think of him. God is already answering our prayers in many, many ways and we feel we are truly blessed. Even if the news had been that there was nothing that could be done, John was at peace with that. He knows Jesus as his Saviour and was not afraid to die. Don't get me wrong.....we are both praising the Lord for the chance at a bit more time together, but just know, John is ready if God calls him home.  I hope this is a helpful site to all our friends and family. I will be sending out email invites to log in and view this site in the next couple of days. Look here for updates as I post them. This way, I can spend my time with John instead of texting and talking to everyone who loves us and are concerned and just wanting to know how things are going. You can send messages to us on this site, also. Love you all so much!

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