Fighting the Good Fight


Fighting the Good Fight

"I know you're scared. I'm sorry. We just have to keep moving forward, that's all we can do."

Those were the words my husband said to me as we found out on Wednesday that his diagnosis had just gone from bad to worse. I was the one crying, he was the one comforting me.

According to the Mayo Clinic, the infection has moved into his brain and they are not sure how fast it is spreading. Usually when they get to this point, since it has infected his left frontal lobe, there isn't much they can do but they are confident that they can stop the spreading and possibly reverse it because he has been stable on his meds the last three months. However, the worst case scenario is that he will have to have brain surgery to remove that part of the brain which is infected. And the most common side effect, if not death, is him losing his personality, as this is the portion of the brain that controls it. Which means, once he comes out of this surgery, he most likely will not be the man I married and fell in love with. That is just scary because they can't say how he will act. It's completely unreal.

But we were adamant about not doing the surgery, even though my husband and I both understand that worse case scenario, there is no choice. So, he is being closely monitored. We spent ALL DAY Wednesday speaking with multiple doctors. They wanted to admit him but we talked them into giving us a day, to go home, to reflect, to come up with some sort of plan of our own with how we are going to deal with this. They were very insistent on me being there with him at every doctor's appointment from now on so that as they make decisions, they can make and act on them fast. Friday we are going in again to meet with Infectious Disease and a Neurosurgeon. We will also meet with the ENT again who will be performing most of the surgery along with the Neurosurgeon.

What we were told was this... His disease is rare. What is even rarer is that he is a healthy male, aside from past allergies and sinus issues, and he doesn't possess the normal diseases that lead to this kind of infection. As well, it is even rarer still because he one of the only cases of this kind in the United States. It is more common, although still rare, in India. When they say that, they mean the progression of the disease. Because the normal cases progress within hours and days and turn fatal pretty much within days if they are unable to remove the infection. He has been dealing with this for six months. So, they are hopeful they have some time, as in days and maybe a week or two at most, to do testing as long as they are monitoring the growth of the infection which is in his brain.

With that, we were told, she will not make this decision on her own. On Tuesday of next week they have already scheduled a review meeting with all of his past doctors from the last six months who have worked on him and his new doctors at Mayo Clinic, along with the Mayo Clinic review board and are having a few other doctors fly in from other States who will all determine how to proceed next.

In meantime, he's been drained of blood for a two page list of tests. We are doing more blood work Friday. They are checking his immune system, for genetic disorders, and cancer markers, again. They are exhausting all other avenues to rule them out before they proceed and even though some tests may take weeks to get back, if they have to proceed without the results, they will.

So, we know more than we ever had about his condition but the involvement they are taking at this point is frightening and happening so quickly it's really hard to wrap our heads around. We have so many decisions to make and are not sure how long we have to make them. How do you prepare for something like this when you've been led to believe that with time he could be cured completely?

Yet, that is where we are. So we are choosing to focus on what we can for now... It's in the doctors hands.

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(((Hugs))), Casandra.\r\nYou and your husband are doing extraordinary things in the midst of such an awful situation. And you are doing what you need to do for yourselves and for each other.\r\nBlessings and comfort to you both.


Cassandra.\r\n\r\nI will be praying for you and your husband. I have to agree with Kathy and Dense, EG, and G-J. \r\n\r\nYou are a graceful person to think about your husband needs and your. You and your husband getting everything in order is the best thing. And having to spend time with each other is great before he goes in. \r\n\r\nYou are a strong woman.


Oh, Casandra, I'm so sorry for this news. I agree with EG--you both are responding with such clear grace. Your ability to focus on what you both need is really wonderful.\r\n\r\nI'm grateful you keep us posted. \r\n\r\nAnd, please feel free to bounce any worries and thoughts off of us. We're good listeners and can help you sort through to find the right decisions for you both.


Dear Casandra, My prayers are for healing for your husband and comfort for you as you both work at these tough decisions! You are walking through this with such clarity in your responses to the doctors. I know this is such an unbelievable situation and I can't help but hope that when the surgery takes place a better scenario may show up! I will think of you both as you go thru this weekend and hope you can enjoy some special moments together.