TerryFord

Let me start out by saying that I am(so Far) a survivor of this disease.

I am posting my story in the hopes that others may learn from my experiences.

This post may be a little long for some readers, but for others it may not contain enough info, if anyone needs more info please contact me and I will give as much info as I can.

My story begins in February of 2001.

I was very ill for approx. 6mos. prior to my diagnosis. My family doctor kept prescribing antibiotics for what appeared to be a combination of ear and sinus infections.

After the 3rd month(April) of these symptoms I had lost most of the hearing in my right ear. My doctor said it due to fluid build-up in my "Infected" right ear and that I should take these antibiotics until I could be seen by a specialist. The "ENT" (Ear-Nose-Throat) doctor had a waiting list and I would not be able to be seen until the first week of June. He was the only specialist in my area and the only one within a reasonable distance which was part of "My Allowed" network of doctors covered by my "HMO". The next couple of months was very bad, Sinus headaches, runny nose, coughing, etc. -seemed like the same old sinus infection problem. I dealt with it.
When I was finally able to see the "ENT" in June, he said that my throat looked very bad and put me on another antibiotic, aka "LAST CHANCE ANTIBIOTIC", and report back to him in 2 weeks, if the problem with my hearing was still there, he would place a tube in my ear to drain the liquid.

In 2 weeks I returned only to have him ask me to come back 2 days later to have the tube placed into my ear.

I did, my hearing returned as soon as the procedure had been performed...I was very happy and left.
2 days later I started having pain in the joint of my jaw, just below my right ear and a "SPLITTING" headache. I called the "ENT", he asked me to come and see him that day fearing complications from the "TUBE" procedure that had been performed.
After being examined, he said everything was fine and speculated that maybe I was suffering from "TMJ" which is a problem in your jaw-joint caused by "GRINDING" your teeth while you sleep, I disagreed with him, but he assurred me that everything was fine with my ear and if I should continue to have these problems I should again see my family doctor for a referral to another specialist for this problem.

After only a few days my sinus problem became worse and I again went back to my family doctor. He claimed I was again suffering from another sinus infection and tried to prescribe antibiotics again -I refused and expressed my concern about this sinus problem that we were unable to clear up with antibiotics. After realizing that I had been on many kinds of antibiotics since February, he agreed that there was indeed a problem and then asked me if I had ever been checked for allergies. I had not, so he was going to try to get me an appointment to see an allergist and sent me home.
The next day I awoke with a headache which increased in intensity over the next few days and I finally went to the emergency room. After telling them the story, they did an "X-Ray" and found my sinuses to be "VERY" cloudy. Told me to take tylenol and to see my family doctor ASAP. This was on a Sat. Evening, I had to wait until Monday to call my doctor.
On Monday I called my Doctor he asked me to come in, I did. I told him what was going on and also told him that in addition to the headache, I was also having a "Burning" pain on the right-side of my face, where the corner of my nose meets my lip. He asked some family medical history questions and after learning that my younger sister had "MS", thought that maybe I too was postitve for this and wanted me to go for an "MRI", I agreed and had it setup 2 days later.

My headache only intensified, I couldn't work, I couldn't function, everything I did only increased the pain in my head, I could only sleep for a couple of hours at a time due to the pain and none of the over the counter medication would get rid of it.
It was now the middle of August 2001.

I went for the "MRI"...it took 2 days for the results to get back to my doctor. He called me to come in and told me that my "MRI" looked very bad...it showed a huge mass in my sinuses...he again referred me to see the same "ENT".
I was supposed to see the "ENT" 3days later, this was the soonest he could see me.
The day before I was to see him my nose started bleeding, not out of my nose, but into my throat.
We called the "ENT" and told him what was happening...he asked if we could drive to the city he was working in that day and he would see me.
We went to see him and he "FINALLY" used a scope device which he put into my nose and had the first look at my tumor. He told us (me and my wife) that this looked very bad and wanted me to go to his office the next day for a biopsy.
After taking the biopsy on a Tuesday, he said they should know something by Friday.
My headache had only been getting worse...I called on Friday, they still didn't have the results, said it would probably be Monday now.
On Saturday morning the pain was absolutly unbearable...my wife drove me 80 miles to the Cleveland Clinic in downtown Cleveland. We told them the story, they gave me some narcotics for the pain and asked me to return on Monday with the biopsy sample and "MRI".
We returned to Cleveland on Monday, they confirmed that I did indeed have Large B-Cell Lymphoma and took bone marrow samples from both sides of my pelvis.

Asked me to return the next day to start treatments.
They told me that my cancer was probably genetic...they speculated that the "GENE" which caused my lymphoma, was probably the same gene that caused my sister's "MS".

It was a very tough regime of treatments...Every 3 weeks I would drive to Cleveland for Chemotherapy, Biotherapy and a Spinal Injection. I did this for 4 months Till the end of December.
I started having daily radiation therapy in January which lasted for 6weeks.

My doctor explained that my cancer seemed to be localized...not in my lymph nodes, bones, or organs, but he thought it was best to treat my illness as though it was everywhere. I agreed.

So far, so good...I have to go for checkups every4 months which consist of bloodwork and a catscan.

To sum it up....
I went through many months of pain and suffering, taking for granted that my local doctors were top-notch and would take good care of me.
Only after my wife decided to take me to the Cleveland clinic did I finally start to get relief.
I went for about 6weeks with a headache so severe that I could not function, I was unable to sleep, eat, or move....all I could do was sit on a couch, propped up by pillows and moan and groan while my kids and wife worried over me.

I spent 10 months of my life fighting this illness andwas off work for 8months...it gave me alot of time to see the world in another way.
The experience has changed my life in many ways...here are a few:

1. I Don't take life for granted.
I used to put off chores and family time to work because I thought there would be plenty of time to catch up later.

2. I Don't waste my time
I don't let little things bother me...they are a waste of time...I spend my time doing things that mean something to me or somebody else.

3. I don't try to fool myself
Material things do not mean as much as you might think. This illness cost me a very good job, a nice home and financial security -all of the things that I was sure I had to have to be happy.
Remember this.....after our lives are done, nobody cares if you met your sales quotas every month for 2 years, or confronted the neighbor about his dog messing in your yard....our "MAIN" job in life is to educate when we can and create memories for our kids and family whenever possible.
It is these memories that the people you leave behind will have for the rest of their lives....this will be your legacy!

Sorry so long...hope somebody has gotten something out of this.

Reply if you have questions or comments.

Thank-You,
Terry

------------------
If You Always Do What You've Always Done, You'll Always get what you've always gotten.

[This message has been edited by moderator2 (edited 08-03-2003).]

__________________
If You Always Do What You've Always Done, You'll Always get what you've always gotten.