We came to the outpatient acute care clinic at about 0900.  The place was packed.  families and patients and us…all just hurry up and waiting.  We did get to talk to alot of really nice people and they had all been through several treatments similiar to what I would be going through.  We had a prayer meeting with several of them and all were very positive about recovery.  Some looked very weak and sick, and almost all the cancer patients were wearing masks.  I was sceduled for a bone marrow biopsy and probably 20 blood draws.  this of course took all day.

This place is so pretty.  It is heavily wooded with lakes and nature  trails.  It is also kindly accessable to handicap and motorize wheelchairs/scooters.  We have gotten to see alot of deer, and there is promise of bison and gators and wild horses.  Since I will be in the hospital, Mom,Dad, and Don will have to let me know of anything else they see.  Another special treat is that the bath house is right across the street, so hot showers are not a hill and hike away…also we have the lovely Tippy, mamma’s little chiwawa to keep us company.  She is so sweet and she just adores Don (he can’t replace momma but we’ll just say she likes him alot!)  She has been really good even though she’s had to spend some long days crated up waiting on us to return from preliminary tests and such…

Thursday after the appointment was a little crazy.  We kept having to make trips back and forth between Human Resources at BMC and Dr Mahmood’s office hand carrying information.  We wanted to get to Shands as soon as possible.  Mom and Dad were great, and Don too.  Emily at HR was a super help and got all the right people involved.  We are still calling her regulary from Shands if we need her to make something happen.  Anyway,  They got us an appointment first thing Monday morning, Oct 12.  Mom and Dad got busy finding a campsite to stay at, and Don and I had to wrap up a bunch of loose ends with work and getting our animals taken care of.  Shands told us over the phone to be prepared for a long stay and that we would probably start chemo as soon as a bed was available.

Dr Mahmood was very kind and friendly.  I think he took some blood and did a physical exam.  Blood work was good and physical was fine. no problems.  He then said he would like to look at the slides himself as he had already read the pathology report that came back from a lab in Tennessee.  The surgeon Dr Morris wanted to be sure the sample was checked very thorough.  Just in case.  Mom, Dad, and Don came to this appointment with me.  When Dr Mahmood came back he told us the news.  I began to cry a little.  It has felt very overwhelming.  I felt sorry for the doc have to see me tear up like that, but I’m sure he’s seen it before.  He then told us that I have Acute Myloid Leukemia with an extramedulary presentation.  He told us it was a very aggressive cancer and needed to be treated promptly for the best success.  He also felt it was better to go to a larger University hospital in order to be managed by a team of docters for the best outcome and prognosis.  He let us know that even though the treatment plan is pretty tough alot of people who have this disease can go into complete remission with a potential for cure with no recurrence.

Oct 2, Friday, Dr. Morris Office

I am healing good, pain better, incision looks good.  Pathology report is in.  Dr. Morris was unable to give us much information but said it looked like a process associated with Leukemia.  He suggested that we not google at this time due to the fact, we don’t really know anything, and there’s alot of weird or misinformation out there.  so I went straight home and got online…lol…he was right.  He set up an appointment with Dr. Mahmood Oncologist for Oct 8.

Something kind of funny that goes with this… I had gone to Johnny Dukes to watch him ride my horse and get some fresh air and sunshine.  Also listen to his stories.  He has some amazing stories of years of horse riding and training.  I love him… Anyway, Don was coming home to get me because I wasn’t really supposed to be driving.  I still had plenty of time to make it to Dr. Morris’ office for the appointment and here comes Don flying down the dirt road to Johnny’s arena!  That’s weird, what is he doing?  Well, Dr.  Wadhera needed me to call his office by noon, so Don, was trying to get me.  It was 12:10.  Supposedly, the Doc was waiting for the phone call… Anyway, we hurried home, called him, put him on speaker so we would both hear what he said.  It was so crazy…he couldn’t really tell us anything over the phone, and was kind of scetchy and unclear,  but said that Dr. Morris would be consulting another doctor.  We looked at each other…  I told Don..this could not be a good thing, considering all the doctors I already had, what would I need another for…we shall soon see.

So they started with a nice laproscopic procedure but after they got in decided they needed to go in through an incision in my abdomen.  For those that don’t know,  laproscropic is just a few tiny little holes in the abdomen, but with an incision, it ends up being about 4 inches or so  straight up and down, at the belly button.  Anyway, they removed a mass about the size of a tennis ball, and put me all back together again.  I was on a clear liquid diet (that is nothing to eat that you cannot see through, for 6-7 days.  I was also on a patient dosing morphine pump a big part of the time, so I was also in “La La land”, and not necessarily in a good way.  I think the morphine made me see and hear very weird things.  As soon as I closed my eyes all kinds of colors and graphic objects would start swirling around like rivers.  I was scared to close my eyes, but of course, the morphine made me very sleepy.  Glad that part is over.  All in all, I was hospitalized from monday to tuesday (8 days).  Dr. Morris sent off my mass to get evaluated, but told me at the time, that it just looked like a lump of lymphnodes all clumped together and he couldn’t say for sure, but that he didn’t think it was cancer.  I remember thinking at that time,  that it would be very strange for a bunch of lymphnodes to gather up for no reason and start causing trouble, but whom am I…next apointment friday Oct 2, with Dr. Morris for post op and hopefully results…

Sept 23.  Surgery was scheduled for 10 am.  I had several people come and pray with me but the most amazing at this point was when I was getting wheeled down to hallway to surgery and Don was with me. Here comes Carlos Isaziga and Jack Reese (from Jenks ave) running up the hallway towards me!  I was so suprised to see them.  They seemed somewhat out of breath, and said “Just in time, can we pray with you real quick?”  I felt so special and loved.  I knew someone had called them and they had made all this effort to get to me before I went.  This is God’s work.  I could not leave this out because it touched my heart so much.  I haven’t been to Jenks Ave. Church of Christ in years… I love the family at Jenks.  They continue to make such a huge impact on my life.  Praise God

Sept 21, Monday I had called in sick, and was trying to feel better.  I was scared to eat much so I just ate a bananna and took some pain medicine I had.  My preop appmt was at 3:30 pm but I wasn’t sure I would make it.  something just didn’t feel right, it felt like something was trying to grow through my backbone.  Around 2 pm I called Dr. Wadhera’s office and told them I needed to either come there or go to the ER and they said go to the ER.  I called Dr Morris’ office and they said come there first.  I grabbed the kids and drove to town.  Myback was really hurting.  Dr. Morris got me admitted directly and I was put on the 2nd floor.  They scheduled another CT exam, an xray and hida scan to check gallbladder function.  The CT showed the mass to have changes since previous CT done 1 week earlier.  We would continue with the plan for laproscopic surgury for wednesday Sept.  23.

Dr Albibi scheduled an endoscopy/colonoscopy which only showed mild gastritis. Colon looked great. Dr. Morris decided he needed to do a diagnostic laproscopy of abdomen which he scheduled for September 23 with preop on September 21.

I continued to work at this time and ride my horses. I had met a girl named Rebecca and she started coming out to ride Cash. This was on the saturday just before I went into the hospital at BMC.  I was noticing some back pain but just thought is may be muscular.  So anyway I worked Thursday, Friday, was off Saturday and scheduled to work Sunday and Monday. While at work Sunday I spoke with Dr. Wadhera about the pain in my back. My stomach was bothering me too but the pain across my rib cage in back seemed worse/different. Don would press on it like counter pressure and it would really help. Dr. Wadhera thought it was muscular and a friend at work gave me a back rub ( thanks Kim). By Sunday night I was not doing well. I told Don I needed to call in sick. He had bought Subways for dinner.  my sandwich hit me like a ton of bricks.

I decided today that it would be good to keep a journal. I’ve always been too embarrassed to do one before, but I want something to remember this time and maybe even give my children. I love my kids. I am so proud of them. And I love Don. He has been so good to me. I thank God for the love and support of my family. Mom and Dad love me so much and this is very hard on them.

Okay, so let’s start kinda somewhere near the beginning… For the last several months I’ve been complaining of gastric pain, constipation, bloating, etc. I’ve had irritable bowel syndrome (IBS) for years and just assumed that was causing the pain. As it continued to worsen or at least flare up, I started thinking it was gastritis or maybe an ulcer. It was beginning to affect my work. In August I tried over the counter Pepcid and some probiotics with some relief. I’d been on a mild stool softener for a year. only taking as needed.

In September, around the 10th or so, it got so bad I went to Seawind Medical Clinic. They decided to do an abdominal xray.  This showed a possible illeius so they put me on a liquid diet and scheduled an abdominal CT on monday (with and without contrast). This is when it all started. The CT showed a small soft tissue mass about 3.6cm x 2.5cm anterior to the aorta at the bifurcation (this is where the aorta splits at about the naval level and goes down both legs). At this point I went to see Dr. Wadhera for the first time. Nikki, a friend at work, was really concerned and recommended I see Dr. Finney one of our cardiovascular surgeons (he was never consulted on my case). Dr. Wadhera was not concerned initially, but after speaking with the radiologist, decided to consult Dr. Albibi G.I. and Dr. Morris General Surgeon.  Dr. Wadhera is very thorough but not quick to grab a knife.