A Tale of No Direction...

Hello my fellow readers and those of you who may have just found us, it's Trevor aka T Man with our monthly tale.

Brenda has been feeling lost lately. A month from today, will be her 13th Craniversary or the Anniversary of her craniotomy. It's a big deal. Some in the real world keep telling her, she's lucky. Brenda does not believe in luck and you are also downplaying what she went through. Sure it wasn't a 13 or 14+ hour procedure, but she still had her head drilled open. It was under 2 hours and the neurosurgeon was able to get to her tumor, as it was easy to evict along with the tail. I love Brenda's sense of humor. The Eviction of Mini has gone many miles in sharing her brain tumor story. Brenda had what is referred to as a meningioma brain tumor. Let's get something straight right from the get go. It was a brain tumor! 

I want to get into the meat of this tale. I love meat! BOL 90% of these types of brain tumors are considered to be benign, a word that Brenda despises, as it does not give it the respect it deserves. Don't ever use that word around Brenda. She prefers you use noncancerous or nonmalignant. It was something that shouldn't have been there and it deserves to be treated with respect. 

Brenda was basically told that her mass, lesion or meningioma was only the size of a walnut and could be watched. Not even realizing at the time, that it was indeed a brain tumor. That terminology was never used. Shame on the medical community for belittling it! She was even told before she had her CT, which she asked for in the first place, "that if we find nothing we are done." After almost 13 years this still is a sore spot with Brenda, although she has forgiven the physician who said this. However, you don't forget, let us be clear, there is a difference. 

Brenda knew for months that something was wrong. She had no idea it would be a brain tumor, but she was experiencing terrible head pain on the left side, from a previous head injury she had sustained. Brenda did not seek medical attention right away, something she does regret. It was over time that it got worse and needed to be addressed. A skull x-ray was performed, but on the opposite side. With the brain, the pain can be on one side, but the tumor can be found on the opposite side. It's the brain we are talking about, so imagine the confusion, that Brenda experienced. Needless to say nothing was found on that x-ray. 

Brenda knew something was wrong. She was having terrible nosebleeds and her blood pressure was sky high. The nosebleeds in itself could have been a tip off, of the possibility of a brain tumor. That would not make sense until she saw her MRI report after her craniotomy, which she obtained because she heard that others were getting their reports. This was the one performed that confirmed her meningioma brain tumor. 

Brenda and her mother were sitting on the edge of her bed that Tuesday evening, August 26, 2008, wondering what the next step would be. No direction in sight. You see where we are going with this? Brenda was not actually told that she had rheumatoid arthritis (RA) either. For some reason, Brenda is never told anything outright, when it comes to medical issues. She is dealing with something at the moment, that she might as well be walking in the dark. She has no idea what to do next. She reached out to one person and that proved to be a mistake. Brenda is no further in her quest on what to do. She is frustrated, angry and sad. 

Her life continues and this past week, she ended up having to report for Jury Duty. That meant walking over 2 miles that day. As you know, we have been experiencing hot weather and smoke from the wildfires. That combination can be difficult to walk that far, if you have any kind of medical conditions. Brenda has OA, which involves both of her ankles, so they end up swelling when you walk that far. She had no choice but to walk. She couldn't take a chance on being late or getting there so early, she would have to sit outside. It doesn't matter, she did and now is paying for it. She has been in bed most of the weekend. She's been crying too. 

I've not seen Brenda this distraught in quite some time. She has too much to deal with at the moment. More medical appointments on the horizon and probably some more mysteries. It always seems so. 

Getting back to her MRI report, which was mentioned above. It was found that the sinuses were involved. That could have explained all of the nosebleeds. There have been few since. There was also a mention of a mimic of MS, which also made sense, because of the RA. Why did it take almost 20 years to find this brain tumor? This kind grows slowly and yes, it was found incidentally on an MRI. It doesn't matter how it was found, it's just as important as any other one. Brenda feels like she doesn't belong in the brain tumor community at times, because she didn't have brain cancer. She does however, deal with vertigo issues, even though she's been told, there is probably no connection. Funny they started after her brain tumor was removed, so she has a hard time not believing there is one. 

Why is is so hard to give Brenda a road map or a treatment plan? It's frustrating not knowing what to do.  Brenda has been told she can make whatever decision she wants. It's not a lot of help, there is still no direction. She's heading toward I don't care, no help, no direction, so why bother? 

Like she shared before, she might as well have have been taken out in the middle of a cornfield, dropped off and hopes she makes it back to town safely. With her sense of direction much worse than before her brain surgery, that is not likely. Brenda used to have a great sense of direction. Now, she has to plan her route before and know exactly where she is going. You cannot even began to understand how frustrating this is, until you've experienced it yourself. 

No matter what happens, Brenda will have to face this alone and that is not how it should be. When she hears things like; "Were all in this together." it's more than she can take at times.

This is T Man barking off...