Emergency Room

On Tuesday morning I got out of bed around 3:30am. This was a common occurrence since my condition was discovered.  Around 5:30am I started feeling nauseated and my body was hurting all over.  I decided to take a hot bath to ease my pains. That proved a bad idea.  While it did give me immediate relief, I became overheated and very lethargic. I tried to get out of the tub after about 15 minutes of hot water soaking and most likely fainted. I was very weak but was able to call for Janine to help me. She could barely hear my calls for help as she was still laying in bed in our bedroom which is not within site of the guest bathroom where I was in the tub.

Janine was not able to get me out of the tub and she saw I was in a very bad way. Not knowing if I was having a heart attack or stroke she called 911.  I think it took the ambulance and firefighters about 10 minutes to get to us.  One of the firemen picked me up from the tub and placed me on the ambulance stretcher.

AMR is our ambulance service in Jackson.  The medics that worked with me were very professional and did an excellent job caring for me. Janine wisely chose to drive her car to the Baptist Hospital ER instead of riding in the ambulance with me.  The vehicle was not comfortable and I could feel every Jackson bump in the road.  Thankfully, they drove at a normal pace without a blaring siren.

The Baptist Hospital Emergency Room is where I was taken.  My oncology clinic and doctors as well as my pulmonary doctor's clinic are all located within the Baptist campus so it was the most logical place to go.  I guess we got there around 7:00am and by about 10:00am I was admitted to a private room.  The ER staff and doctor did a thorough job of assessing my condition and getting an understanding of the recent history of my situation.  Luckily they ordered a chest e-ray, which I protested because I thought Dr. Young did not want anyone doing any procedure without her consultation. Anyway, the ER X-Ray person rolled me and my gurney to their lab and made me stand up for the x-ray pictures. I was not happy as I was still very weak and shaky.  They even had to redo one of the pictures because they did not keep my IV hose from interfering with the x-ray.

The x-rays showed I had pneumonia. So admitting me was a good call.

First Round of Treatment

We started going in every day for my shots on Monday morning, February 17, 2014.  We continued each day for 7 days and just completed the Sunday shots, today, February 23rd. Now I wait for three weeks and go back for round two.  In the meantime, I will have weekly blood tests on Wednesdays.

The injections seemed to cause little serious side affects.  I did experience some redness around the injection sites, but not too bad.  Also, the shot locations were changed each day to avoid over exposure at specific locations.  We used each arm, each side of the stomach, each thigh and finished today in the right hip. I still get tired very easily which is a normal side affect of these treatments.

Results from Bone Marrow Biopsy

The much anticipated day finally arrived on February 5th,  two weeks after the bone marrow test were done. It was a relief to get the results so we would know what we were dealing with.  Dr. Young called my condition a form of blood disorders (cancer) known as Myelodysplastic Syndrome with Blast. (MDS)

(See these links for more on this condition:)
http://www.cancer.gov/cancertopics/pdq/treatment/mds-mpd/HealthProfessional  and
http://www.webmd.com/a-to-z-guides/myelodysplastic-syndrome-causes-symptoms-treatment)

While my diagnosis could have been much worse, this was not good.  She did her best to explain this condition in terms we could understand and also gave us some literature and a few good web sites to see and read on our own. Needless to say we were very unsure about all of this as it sounded scary. She did feel now that we had a firm diagnosis, we could pursue a course of treatment with an expected positive outcome. Her recommended plan was for me to begin a series of chemotherapy injections (shots) over a four month period, one week out of each month.  The shot is with a drug called Vidaza.

(http://www.webmd.com/drugs/drug-90394-Vidaza+inj.aspx?drugid=90394&drugname=Vidaza+inj&source=1)

Basically, the treatments are administered every day with two injections given me at the JOA clinic, Monday through Sunday. That week constitutes the first of four cycles of treatment.  Each Wednesday new blood tests will be conducted to evaluate if my blood levels have improved, or gotten worse.  Consultations with Dr. Young we be done if needed and we begin the next weekly treatments the following month.  We continue in this manner for the full four month course of treatments.  Then another bone marrow biopsy will be done, the results of which will determine the next course of treatment, if needed.

We were given a schedule for the next two months beginning with the first treatments on Monday, February 17th, 2014.

Insurance Issues - Medicare

Since we had to wait two weeks for the biopsy results it gave me time to concentrate on pressing health insurance matters.  I was/am scheduled to go on Medicare on March 1, 2014 which is great but trying to get an understanding about necessary Medicare Supplemental Insurance can be challenging.  This was especially so for us since we have always been covered via our group insurance plans where we worked. Once I retired from the City of Jackson in 1996 I was added to Janine's group policy with the State of MS. It was smooth sailing from then until now.  However, when you are in the middle of some very expensive medical procedures the last thing you want is to drop or lose coverage.  This could kill us financially as health care expenses are totally ridiculous if you are not insured.

So my investigation into the various options became an obsession.  On top of that about 6 months prior to becoming Medicare eligible, I started getting all kinds of unsolicited mailings, e mailings and phone calls from agencies and companies wanting me to sign up with them for supplemental coverage. I did talk to a few of them and let them educate me, so to speak.  Finally, after hearing from and reading so much stuff, I decided to call a friend who was in the insurance business but retired, now. He recommended a few names of people he respected and should call. This proved most helpful as I was able to learn more and find someone local to deal with instead of people from all over the country trying to get my business. Ironically, it was a cold call I received one day from a very nice sounding lady with a local insurance agency that impressed me more than any I had gotten.  She identified herself and agency and simply ask if it would be alright if they mailed me some information about their Medicare Supplements Policies. I said yes, it was in the mail the next day, I liked what I read, called the agency and had a very good discussion with the owner.  Later he and I met in my home and I enrolled in one of the plans he represents.  What a weight off my mind to have that settled. The only other thing was to secure a Medicare Part D (Drug Plan).  That was pretty easy as I had already been advised by four different people the best one to chose. So I went on line and enrolled in the Drug plan.

Now that all of that is settled and done I have cleared my mind for the matters of actual healing.

Hematology/Oncology Dr Young Takes Charge

After Dr Young saw us on my first appointment on January 22nd we knew she was very concerned at my lower than normal blood counts. Even their clinic's blood test were not any better than others and a few levels were even lower. The White and Red cell counts were the most concern with lower than normal platelets, also. So Dr. Young discussed several diagnosis possibilities which sounded very scary but she wanted to have me get a Bone Marrow Aspersion and Biopsy. She said this test would give us a definitive answer and proper diagnosis. That didn't sound very fun or very good. She was very assuring but never wanted to say I was ok, because she knew I was sick. She wanted this test so we would know better what we were dealing with and, more importantly,  what treatment was best.

We were lucky to get into have that done the next day, January 23, 2014. I basically went under a local anesthesia and a "feel good cocktail" for the procedure performed by a woman doctor in the Baptist Hospital Colonades next door to the Hederman Cancer Clinic where Dr. Young is located. She tapped into my hip back pelvis area and drew out a small piece on my bone and it's marrow. The procedure went well with little discomfort.

The bad side of it was having to wait 2 weeks for the results. All the while my anemia is making me very tired and more susceptible to infection. We all agreed I needed to stay away from sick people by avoiding crowds. So I did and we waited.

Test Results - More Tests

The one thing about medical people is they love to test. The colonoscopy and EGD revealed a few polyps that were precancerous and were removed for biopsies. More polyps were found in my gallbladder or could be gallstones so Dr. Hogan, indoscopy doctor, referred me to consult with a surgeon. Also, he was very concerned about my low blood levels so he referred me to an oncologist/hematologist for further evaluation. Finally, he recommended I have a CT scan of my abdominal area.

When it's late in the year you've already met your deductible so why not make sure.  So Christmas time was full of tests and doctor visits. The last one I saw was in mid-January, Dr. Tammy Young, oncologist/hematologist, with the Jackson Oncology Clinic.

Physical Followup December 15th, 2013

In the two weeks between the 2nd and 15th, my urinary infection appeared to be better but I began to experience pretty bad pain in my right hip. By the date of my follow up it was very painful, almost as bad as when I had fractured my pelvis 6 years ago. However, that was my left hip and this latest pain was in the right hip. I didn't recall falling or doing anything to injure it other than my daily walks, one of which was 10 miles.

Dr. Headley confirmed my urinary infection was clear. He listened to my description of the hip pain and ordered an x-ray, the results of which showed severe arthritis in my right (good) hip. But as the days wore on in December the pain got so much worse, I figured I may have a fracture. Anyway, I reminded Dr. Headley about the need to do an additional blood work-up due to the low counts from 2 weeks before.

He had forgotten this until I remembered it but agreed we should do it to be careful.  The blood levels for all major categories had dropped again so now Dr. Headley looked very concerned.  That's low red, and white cells plus lower than normal platelets. Since I was also having more frequent acid re-flux he referred me for a colonoscopy and EGD exam.

Annual Wellness Physical December 2nd 2013

My journey started long before I went to see Dr. Headley on December 2nd of  last year (2013) for my annual wellness physical examination. Since that is a long story, I'll post about the ride I've been on at a later time. Sufficed to say, I was feeling good with no real major pains, hurts or noticeable new issues prior to December.

In fact, I was walking 3 to 5 miles per day and occasionally did 10 miles or more.  Since the MS Blues Marathon was a month away I began training for the Half Marathon part of the event. That's only 13.1 miles which I had walked on three or more occasions but never in a competitive event. So my goal was to walk 5, 6, 7 ...miles per day until I reached 15 miles (adding a mile a day until I reached my goal of 15).

I had last been in a 5K event in early November doing ok time wise by my standards. It was a rather cool morning (down right cold) so I struggled with my breathing in the first few kilometers. COPD was my main ongoing health issue so breathing is critical to good exercise like this. After my lungs got adjusted to the cold air and a few puffs on my rescue inhaler I did fine.

As the weather began to get more wet and cold throughout November I cut back on my daily walks to   about 4 days a week on average. I hoped to do the above training in Decmber so as to start off 2014 in good walking condition.

So Dr. Headley found a urinary infection easily treated by 10 day's of antibiotics. My blood counts were a bit lower than normal but not too serious. He told me to come back in 2 weeks for a follow up.