The results are in
With patience wearing very thin I began this week wondering when I was going to be able to see a neurosurgeon. With the news my primary care Doctor had given me, I was anxiously awaiting the specialist to whom he was going to refer me to call. As Monday went along with no word from him, Purple was working the phones and her professional relationships to get me into another neuro at OSU medical center. By noon she had a CT scan, MRI, and appointment set up for today with the best in the state. I decided that I would go with this option, since he was quick to schedule and understood the urgency, even if it was only to ease my mind. But by the end of the day the referral from my normal doctor came through, and he wanted to see me the next afternoon. I went to that appointment, and that is where my up and down week started.
As I sat in his office on Tuesday afternoon, I hoped Dr. M would tell me that it was all a misunderstanding. Instead, he confirmed my worst fear. There was a re-occurrence of the tumor that had been removed in 1990. And although it was much smaller than the one from 21 years ago, it would still have to be removed the same way. This meant cutting along the same line where my scar is, ear to ear over the top of my head. It meant removing part of my skull and pushing my brain aside to get to the marble sized growth. It meant 3 or more months of recovery time, meaning no work and limited activity over all.
Of course there were options as well. Wait three months and have another MRI. See how rapidly it is growing and how soon it really needs to come out now. That option was appealing in a lot of ways. Time to prepare and plan, get set up for the surgery and recovery. But when I asked if there was any way to tell if the mass was malignant or benign, he answered there wasn't. That part would be a crap shoot, and if there was indeed cancer present, it could become substantially worse in that time. Upon hearing that I knew there was really no decision to make. I am sure that he noticed the obvious "just got hit by a Mack truck" reaction, because he tried to find the silver lining, explaining that having this type of tumor twice in the skull was so very rare that I may only be the "third or fourth person who had this happen in modern medical history." Really not the words I wanted to hear, but I doubt there was anything he could have said to ease my mind.
I sat in my car in the parking lot for 10 minutes and wept, thinking about 1990 and the pain and difficulty of the recovery. I really did not want to go through that again. And having just been told I have no choice was devastating. Then I began to game plan, returning texts and reaching out to people who I would need to lean on during this. I am not a fan of depending on others, so those calls were exceptionally hard to make. Little did I know that those moments in the car were only the first blow in a 4 punch combo that would lead me to the brink of a breakdown last night.
When I got back to work yesterday I called human resources and told them I needed our info on short and long term disability. I also asked for the info on my life insurance, just in case. I was trying to wrap my head around things and one of the things I had to consider is the chance I could not come through this. I needed to know my boys would be well taken care of. Then came the next punch in the gut, followed by a virtual right cross that made me stumble. When the HR department called back, they first informed me that I had no disability coverage. Apparently when I filled that paperwork out I did not check the boxes for those benefits. I was stunned my the news, thinking that I had elected those coverages. I do not have the means to take 3 months off unpaid. Then they told me that my life insurance would not be valid if something happened because it is only for accidental death and dismemberment. I lost it. Without thinking I called Bethany.
I told her the situation and she immediately kicked into action. She called state and federal agencies to find out what programs they have for people in this position. As I was sitting in my office she was burning up the internet and phones trying to find a way past this. Combine that with Purple calling every nurse, scrub tech, and hospital staff member in her phone trying to get my records and get the facts on this condition, and I had two people working their rear ends off trying to make this better. All the while I was falling apart.
Bethany's news was not good. There was nothing anyone could do to help. That was the fourth and final hit and it brought me to my knees. I was thinking I am going to lose everything and leave my kids penniless. My thoughts were overwhelming. I met Purple at the pharmacy to get medication I needed for this morning's procedure and she could tell that I was in a very dark place. I was ready to give up.
I have always said a real friend will tell you what you need to hear, not what you want to hear. Even if you don't like it, the fact they care enough to be very blunt is really a blessing. As we sat there in her car, again me crying my eyes out, she said then why don't you just lay down and give up and I won't worry about busting my ass to make any of this happen anymore. Ouch, that hurt. And she was absolutely right. While she and Bethany were trying to find away around the roadblocks while shedding their own tears, all I could see was the brick wall and no way out. They were working harder for my health than I was. And while I love them for that, it is not who I am. Time to suck it up.
I approached this morning with the attitude that Dr. C was going to shed new light on this whole thing. I was at the CT and MRI facility early and, even though we had a set back when they couldn't find a vein for the IV, the tests went well. At three o'clock Purple and I were at the OSU Neurosurgery office and we spoke to the doctor.
He showed me my films, from 1990 to the present. First off, the tumor is not necessarily the same as 21 years ago. Sure there is a calcified mass. But there is unknown soft tissue in there too. Could be scar tissue. He isn't sure. But one thing is for certain. The tumor is on the outside of the skull, no where close to the brain. The same surgery really isn't necessary, at least not yet. He brought in another doctor, an ENT. He said this doctor could go through either my nasal passage or between my eyebrow and nose and take samples of the tissue. We can biopsy them. If they are malignant the whole mass can be removed through the same area. If benign, we can monitor it for growth over the next few months or even years. If it never grows and never affects my health, it may never have to come out. That is best case scenario and really the first good news I have had in a couple weeks. They also said that my sinuses have issues and are going to need to be looked at, and I may need to have surgery on them. Compared to the brain surgery, I will take that every day of the week.
Don;t get me wrong. There is still a strong likelihood of surgery of some kind. And they are still going to want me to take a month off to recover. While I have no idea how I will financially do that, its a lot better than 3. I will find a way to make it work. It may still be a long journey. But it's one I can see myself navigating well.
No matter what, today can only be seen as terrific news. I did a happy dance in the elevator and felt better than I have in weeks. I spent the evening with my guys and Bethany and felt relaxed. There was not the pain in my neck and shoulders that the stress has been bringing me constantly since last week.
I appreciate the prayers that I know have been said in my name. This is not the first time I have been shown the power of prayer, nor will it be the last. It amazes me every time. I also thank everyone who called or texted or commented on Facebook. And I really thank these two wonderful women, Bethany and Purple, who have been my pillars of support once again.
I will continue to update as I see the ENT in his office Monday. But for now it is late and I am absolutely beat.
Good Night All............................
As I sat in his office on Tuesday afternoon, I hoped Dr. M would tell me that it was all a misunderstanding. Instead, he confirmed my worst fear. There was a re-occurrence of the tumor that had been removed in 1990. And although it was much smaller than the one from 21 years ago, it would still have to be removed the same way. This meant cutting along the same line where my scar is, ear to ear over the top of my head. It meant removing part of my skull and pushing my brain aside to get to the marble sized growth. It meant 3 or more months of recovery time, meaning no work and limited activity over all.
Of course there were options as well. Wait three months and have another MRI. See how rapidly it is growing and how soon it really needs to come out now. That option was appealing in a lot of ways. Time to prepare and plan, get set up for the surgery and recovery. But when I asked if there was any way to tell if the mass was malignant or benign, he answered there wasn't. That part would be a crap shoot, and if there was indeed cancer present, it could become substantially worse in that time. Upon hearing that I knew there was really no decision to make. I am sure that he noticed the obvious "just got hit by a Mack truck" reaction, because he tried to find the silver lining, explaining that having this type of tumor twice in the skull was so very rare that I may only be the "third or fourth person who had this happen in modern medical history." Really not the words I wanted to hear, but I doubt there was anything he could have said to ease my mind.
I sat in my car in the parking lot for 10 minutes and wept, thinking about 1990 and the pain and difficulty of the recovery. I really did not want to go through that again. And having just been told I have no choice was devastating. Then I began to game plan, returning texts and reaching out to people who I would need to lean on during this. I am not a fan of depending on others, so those calls were exceptionally hard to make. Little did I know that those moments in the car were only the first blow in a 4 punch combo that would lead me to the brink of a breakdown last night.
When I got back to work yesterday I called human resources and told them I needed our info on short and long term disability. I also asked for the info on my life insurance, just in case. I was trying to wrap my head around things and one of the things I had to consider is the chance I could not come through this. I needed to know my boys would be well taken care of. Then came the next punch in the gut, followed by a virtual right cross that made me stumble. When the HR department called back, they first informed me that I had no disability coverage. Apparently when I filled that paperwork out I did not check the boxes for those benefits. I was stunned my the news, thinking that I had elected those coverages. I do not have the means to take 3 months off unpaid. Then they told me that my life insurance would not be valid if something happened because it is only for accidental death and dismemberment. I lost it. Without thinking I called Bethany.
I told her the situation and she immediately kicked into action. She called state and federal agencies to find out what programs they have for people in this position. As I was sitting in my office she was burning up the internet and phones trying to find a way past this. Combine that with Purple calling every nurse, scrub tech, and hospital staff member in her phone trying to get my records and get the facts on this condition, and I had two people working their rear ends off trying to make this better. All the while I was falling apart.
Bethany's news was not good. There was nothing anyone could do to help. That was the fourth and final hit and it brought me to my knees. I was thinking I am going to lose everything and leave my kids penniless. My thoughts were overwhelming. I met Purple at the pharmacy to get medication I needed for this morning's procedure and she could tell that I was in a very dark place. I was ready to give up.
I have always said a real friend will tell you what you need to hear, not what you want to hear. Even if you don't like it, the fact they care enough to be very blunt is really a blessing. As we sat there in her car, again me crying my eyes out, she said then why don't you just lay down and give up and I won't worry about busting my ass to make any of this happen anymore. Ouch, that hurt. And she was absolutely right. While she and Bethany were trying to find away around the roadblocks while shedding their own tears, all I could see was the brick wall and no way out. They were working harder for my health than I was. And while I love them for that, it is not who I am. Time to suck it up.
I approached this morning with the attitude that Dr. C was going to shed new light on this whole thing. I was at the CT and MRI facility early and, even though we had a set back when they couldn't find a vein for the IV, the tests went well. At three o'clock Purple and I were at the OSU Neurosurgery office and we spoke to the doctor.
He showed me my films, from 1990 to the present. First off, the tumor is not necessarily the same as 21 years ago. Sure there is a calcified mass. But there is unknown soft tissue in there too. Could be scar tissue. He isn't sure. But one thing is for certain. The tumor is on the outside of the skull, no where close to the brain. The same surgery really isn't necessary, at least not yet. He brought in another doctor, an ENT. He said this doctor could go through either my nasal passage or between my eyebrow and nose and take samples of the tissue. We can biopsy them. If they are malignant the whole mass can be removed through the same area. If benign, we can monitor it for growth over the next few months or even years. If it never grows and never affects my health, it may never have to come out. That is best case scenario and really the first good news I have had in a couple weeks. They also said that my sinuses have issues and are going to need to be looked at, and I may need to have surgery on them. Compared to the brain surgery, I will take that every day of the week.
Don;t get me wrong. There is still a strong likelihood of surgery of some kind. And they are still going to want me to take a month off to recover. While I have no idea how I will financially do that, its a lot better than 3. I will find a way to make it work. It may still be a long journey. But it's one I can see myself navigating well.
No matter what, today can only be seen as terrific news. I did a happy dance in the elevator and felt better than I have in weeks. I spent the evening with my guys and Bethany and felt relaxed. There was not the pain in my neck and shoulders that the stress has been bringing me constantly since last week.
I appreciate the prayers that I know have been said in my name. This is not the first time I have been shown the power of prayer, nor will it be the last. It amazes me every time. I also thank everyone who called or texted or commented on Facebook. And I really thank these two wonderful women, Bethany and Purple, who have been my pillars of support once again.
I will continue to update as I see the ENT in his office Monday. But for now it is late and I am absolutely beat.
Good Night All............................
Comments
Post a Comment