Thursday, August 17, 2017

#999 – RECAP OF MY JOURNEY UP TO NOW – IF YOU’RE NEW TO THIS BLOG, START HERE:

For those of you who are new to this blog, going back and reading all of these entries at one time to get caught up can be a little overwhelming. While I do encourage you to go back and catch up when you can, here is a good place for you to get started.  This will not give you all of the details. It will be a brief overview of the events that have taken place in my life over the last year.

On August 7th 2016, while I was getting ready to leave for church, I was taking one last look in the mirror to make sure that everything was in order. While standing there looking in the mirror, I reached up with my left hand to try and straighten my sleeve on my right arm, and my left hand wouldn't work.  I also noticed that the left side of my face was drooping a little bit and other parts of the left side of my body were not exactly working right. I really thought I was having a stroke at the time.   So, I called my parents and told them what was going on.  They immediately headed to my house and took me to the emergency room.

For about 2 weeks before this day, I had noticed that my eyesight was not what it had been. In fact, I had gone for an eye exam and was told by the doctor that I simply needed to remember my eyes were not as young as they used to be and that it was time for glasses. When I received the glasses, they seemed like they weren't quite what they should be, and I had already decided I was going to take them back to see if the prescription was correct. For about 4 days before the above-mentioned day, I had started having headaches, my left knee had given out on me a couple of times and I had noticed that when I would walk down the street with my dog I tended to veer off to the left a little bit. For two days before the above-mentioned date, I had noticed that my voice had gotten a little bit weak and hoarse.  With all these things starting to come together and a little bit of tingling in my left hand, I had talked to my chiropractor about the possibility of a pinched nerve. When I explained the different issues, he immediately said that I needed to see my primary doctor and have it checked out, this was not something that he would treat me for. So, I had come over to my parents’ house on Saturday, the day before the above-mentioned date, explained to them all that I have just explained to you. They both had doctor's appointments with the same doctor that I would have gone to and immediately told me to take one of their appointments on the following Monday. However, we didn't get that far.

So, when I arrived at the emergency room on Sunday, the doctors and nurses immediately began running tests.  Before long a doctor was in the room telling me that I needed some specialized imaging that was unavailable here in Sebring, as well as a specialist.  At that time, he said that there was something on my brain. I asked him if it was a tumor and he said “no”. He said it just looked like some kind of spot, possibly a cyst or blood, which had a lot of fluid around it and needed to be dealt with immediately, but that he did not think it was a tumor. So, they called for an ambulance to transfer me to Tampa and it wasn't long until I was in the ambulance on my way to the hospital there.

Once I arrived in Tampa, things began to move very quickly as they ran tests and did scans.  It was not much longer until a surgeon was in my room telling me that I needed surgery right away and that she was ready to do so the following morning.  At that time, they still didn't know what was going on but that whatever was on my brain needed to be dealt with soon. The next morning, I went in for surgery and while I was in recovery, my family was told that I had a very aggressive form of brain cancer called a glioblastoma. They were also told at that time that had I not had surgery when I did, I probably would have only had another 2 weeks.

I spent several days in the hospital, and when I was discharged, I came home to start therapy which would help me regain some lost mobility on my left side.

After I came home, I began the typical six and a half weeks of radiation together with chemotherapy. I was also started on regular monitoring of lab work and periodic MRIs.

in December, while most of my mobility had returned, I once again went back to the hospital for a few days with the chicken pox. Yes, that is correct.  Chicken pox at 40.  Not something that I would recommend. However, something that has given a lot of people reason to smile and even a few people to laugh, including myself (now, but not at the time).

Later on, in December, another MRI showed progression of the disease and it was recommended to me that I have another surgery to remove what was there.

On January 13th, with the understanding that this time I could have significant loss of mobility on my left side, I had a second surgery. This time I woke up unable to move anything on my left side. However, with the help of therapists at an acute rehab facility in Tampa, I was able to regain some of the movement. They were able to help me get on my feet and take a few steps, teaching me how to walk again and do things with the use of only my right arm.

Right before Easter Sunday, I had another MRI and at that point everything looked good. However, my oncologist here in Sebring thought it would be a good idea for me to go ahead and get another opinion. He referred me to Moffitt Cancer Center in Tampa. I also spoke to him about going to Duke University in North Carolina, He thought that was also a good idea.  What would have normally taken a couple of weeks to get an appointment at Moffitt, ended up taking only a couple of days, because once again God intervened. So, right before Easter Sunday I had my first visit at Moffitt.

The following Monday, I met with doctors at Duke University. I showed them the MRI and they said it looked like everything we were doing was working and to just keep doing the same thing and if I needed them, I could come back.

However, I decided that if they weren't going to do anything different, and thought we were doing everything right, then there was no need to go so far away.

It was only about a month later, when I went in for another MRI and visit with the doctor at Moffitt, that he told me the tumor had returned and would require immediate attention.  Within a week I had an appointment with a surgeon who told me there was a likelihood of permanent loss of mobility on my left side.  He would only go ahead with the surgery if I was okay with that. I asked him what would happen if I did not have the surgery. He told me I would have about 4 to 6 months.  I told him then there is no question - “When do we start surgery?”

Ten days later, I had surgery at Moffitt Cancer Center.  I only spent a short time there.  My mobility did not change significantly. However, I certainly came out of surgery weaker than before I went in.  A lot of testing was done on what the surgeon removed.

The following week I met with the doctor that is overseeing my care at Moffitt.  He informed me of a few of things that they found out with the testing they did.  First, most of what was removed was simply dead cells and what little bit that was still growing, was growing very slowly. He explained it this way. Glioblastomas typically grow like wildfire. He said if you look at it like a speedometer in a car, most of the time they are running along at about 50 to 80 miles per hour.  Mine was growing at about 1 mile per hour.  One more bit of information he had, was that this glioblastoma had mutated. This meant that the DNA makeup of these cancer cells now has the same DNA makeup as breast cancer.  He said this was a good thing because there is medicine to treat that particular type of cancer and he felt we could be more successful in treating it based on its DNA makeup with a new type of chemotherapy.

He also felt that since the surgeon found a couple of other spots while he was doing the surgery that radiation would be in my best interest.

So, a month later, which takes us now to the middle of July. I began a 5-day radiation treatment. This was a specialized radiation, some of which was actually called radiation surgery.  At the same time, I began two different types of chemotherapy, the first one I had taken back in August during my first radiation, the second one was the new one based on the DNA testing from the last surgery.

Since that last surgery I have continued with some therapy. Unfortunately, my insurance has run out on therapy and will not cover any more. However, the therapists have been great at showing me things I can do at home to continue improving my mobility and strength on my left side.
My left hand is still very slow and weak and doesn't work properly.  My left leg does allow me to walk.  However, it takes a very long time to get from point A to point B.

Next up will be an MRI and visit with the doctor on August 28.


This has been and continues to be a hard journey, BUT God’s grace is truly amazing and His strength gets me from one day to the next.



As I read this verse this week, I was reminded of a trip my parents and I took together a few years ago through the United Kingdom.  My Dad has done a lot of family research and found out that some of my ancestors came from Scotland.  So, we decided to take a little excursion together through Scotland on the way back to the United States from Kenya.  We rented a car and drove from London to a small town in Scotland.  Once we got there, we were trying to find a place called “Lag Castle” or “Lag Tower”, the home place of my ancestors in the 1500s.  (Yes, I do apparently come from some sort of royalty).  All we had were GPS coordinates.  We ended up out in a cow pasture, driving a low-to-the-ground Prius.  However, we finally found it, at least what was left, climbed the stone wall around the tower and took several pictures.  The place has since had some restoration work done.  At the time we were there, however, it was falling down and looked rather unsteady. I am so glad I don’t have to worry that my God will get weak and tired and fall apart like this tower but remains my refuge and strength and I can ALWAYS TRUST IN HIM.  

And I do still come from royalty because I am a child of the KING!


Lag tower (what is left of a larger castle) - 2009

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