As the days moved on and the reality of everything continued to sink in, I was suddenly hit with a revelation. As I said yet again, "remember that statistics mean nothing because I'm not having symptoms," something dawned on me. "Amy, you are NOT having symptoms." This thought hit me over the side of the head like a baseball bat and got my wheels to spinning.
Ok, so the doctor says he believes I've got this grade one glioma. He wants to do a biopsy. Then we are going to employ a "watch and wait" by routine MRIs. Why do we have to do it in this order? Why should we go in and take the chances of causing problems, if all we are going to do is watch it? Can't we just watch it now and only do the biopsy if something starts looking suspicious? My mind had been suddenly filled with many questions wondering why we were taking our suggested approach.
Then I had the sudden realization that the most likely reason is CYA. Cover Your Behind (substitute word). He wanted the biopsy in case he was wrong. There was really no other logical reason than to make sure that if he was wrong he couldn't be sued. I don't like surgery. I don't like general anesthesia. I don't like the thought of trying to do this with local anesthesia. I don't like the thought of a hole in my head. Most importantly, I don't like tests that are not deemed necessary in my eyes.
So I broached the subject with my husband. This resulted in a fight. He thought we should listen to him. He thought we should proceed just so we know. I disagreed but was willing to listen. At the end of the night, he had not come up with an argument that was convincing enough to change my mind but I agreed to call the doctor and ask some questions. What were my questions? What are the chances of the biopsy causing problems and thus giving me symptoms that I don't currently have? You've said it is virtually inoperable so what would the treatment plan be? Finally, what would be our game plan if I choose not to have the biopsy at this time?
It took a few days for the doctor to get back to me, but that was the time I needed. I talked with friends and co-workers who had more experience in dealing with medical incidents than I did and many agreed with me. Why have it now? Even John began to see my point and understand why I wasn't ready for this if there wasn't a just cause. I had my husband behind me now, it didn't really matter what the doctor's answers were, my decision was more or less made up.
So I heard back from the doctor. There is very little chance of causing problems with the biopsy, the treatment options would include radiation of it is not what we suspect, and we will do MRIs at 6 weeks, again at 6 weeks, then weigh out a plan if I go against the biopsy. These answers sealed the deal. Any chance of problems is too much for me to take the risk without a strong reason, radiation is not an option unless I am having symptoms, and that game plan sounds just fine to me.
After a week of difficult thinking, I had made up my mind to go against the doctor's advice. As several would later tell me, "I'm glad to see it because it's those not afraid to second guess and ask questions, that survive." And we all know that I'm going to survive. :)
Tuesday, August 28, 2007
As the days moved on and the reality of everything continued to sink in, I was suddenly hit with a revelation. As I said yet again, "remember that statistics mean nothing because I'm not having symptoms," something dawned on me. "Amy, you are NOT having symptoms." This thought hit me over the side of the head like a baseball bat and got my wheels to spinning.
Sunday, August 26, 2007
Knowing that I live in a small town, work in a small company, and have many friends in and around all those areas, I knew that the next few days would be spent telling the story many times. Was this necessary? Possibly not, but I wanted those close to me to hear the truth and not something through the grapevine.
Of course, as soon as I left the doctor, I tried to catch my boss and immediate co-workers before they left for the day. I was able to get a hold of everyone and they were all relieved. Then I called my Mom and told her what was going on. I will just say that my Mom and I have very different views on doctors but for the most part the conversation went well. I continued with my phone spree (John was driving) and called my best friend and left a message on my chiropractor's voice mail to let them both know the good news. Finally, we got towards home and swung by to pick up my son at the sitters. I let her know that everything was good and you could see the visible relief on her face. (I had to tell her prior because we weren't certain if we'd be on time to pick him up.)
We had plans already for this night. There was a "going-away" party for one of the ladies at my hubby's work so we didn't have much time to think about things that evening until we found ourselves in the car again. However, I did find the time to sit my son down and tell him what was going on. He took it like a 10 year old. I think he heard the news that I was going to be ok and pretty much ignored the rest of it. He did ask questions as the night moved on but really, what is there to talk about with it?
Although I really didn't want to say too much at the party, several had noticed John's "absence from work" during busy season and some had noticed one or both of our vehicles in the driveway at odd times so it really wasn't easy to keep it quiet. Eventually, I just gave in and I ended up telling most of his co-workers that was at the party. They took it well, things were fine, and they all gave offerings of support and prayers. At least now if John received an "urgent" call or had to leave unexpectedly, they knew what was going on.
I proceeded to call and "floor" some of my friends and learned quickly to start off conversations about it like so: "Listen to everything I say before you react," and end them with: "Remember, anything you read online is based on someone having symptoms that led to the diagnosis." However, I think it was a good thing because it reminded us all that life is short and we really shouldn't have let ourselves stray so far apart. Maybe this will be a new chapter in friendships and not just my life.
Finally, I called my baby brother (ok so he's 23 and taller than me) and let him know what was going on. He took it well, considering, and I had only shocked him enough he didn't even bother to tell me he had a new car!!! That's another story in its entirety, however.
We had a busy weekend planned with a square dances on both Saturday and Sunday night. I was both looking forward to our first square dance in well over a month and nervous about it because I knew questions would be asked. Now you have to understand the relationship we have with our fellow square dancers. We have danced for a little over a year and we are the youngest couple in our area. However, we love square dancing and don't let age or anything else stand between us having a great time with our square dance family. We have made A LOT of friends in square dancing and I really do see them as family. That's why the absence of us for over a month was going to raise concerns and sure enough, more than one mentioned that they had been asking about us.
Yes, I had only just found out about the brain tumor but the facial numbness that led up to the MRI had gone on for six weeks and it made me uneasy and afraid I'd lose my balance, so we refrained from dancing during that time as well. Whether I liked it or not, the two were linked and one couldn't calmly be explained without the other.
After the very first dance, I had the opportunity to speak with the wife of our local caller (the person that does the singing and calls during a dance). They are a wonderful couple that truly helped bring us into the square dancing world and made us fall in love with it. She was shocked but confident that we would be ok. As was everyone else that we talked to that evening. Some shared stories of their own battles with similar things and that was very encouraging. Several more people were added to my prayer list over the weekend as much more than a general "Please take care of all my friends".
He probably doesn't realize it, but the most touching response I received was from our local caller. He had been "on stage" when I told his wife what was going on and apparently some time throughout the night she told him what was going on. He came up to me, gave me a big hug, and said "I'm so sorry kiddo." It probably didn't seem like much to him, but it literally touched me to my very soul and gave me a new sense of strength. Sometimes the little things make the biggest impact.
I think that was the major events of that first weekend. I believe it might have been a good thing that I was so caught up in other activities but at the same time this prevented some of the details from truly sinking in. I was going to be ok. That was all that was really sinking at the time.
Saturday, August 25, 2007
It was Saturday, John was working, and I had a lot of things on my mind. I had a list of at least 60 things I needed to accomplish, just in case the doctor was wrong or at the least before I had the biopsy. However, I still had a desperate need for answers, information, and just someone to talk to.
Through my employer we have a helpline that we can call for help with medical issues. I had never called them before but I thought I might as well see if they have any information for me. I know this program employs over 20,000 nurses who help out the program. What are the odds in that number to get someone who would have any experience in what I was going through? Again I went against the odds.
I talked with the male nurse for several minutes about my fears, questions, and thoughts before he stopped me. "I used to work as a nurse in the OR for a neurosurgeon. Let me try to explain every thing I can." He went on to tell me that my doctor seemed to be handling things the way any good neurosurgeon would. He told me more information about my tumor, including that it typically goes through "growing stages", that they estimate several thousand people a year die having one and never know it, and that I'm in a good position with it having not yet caused me symptoms. He assured me that there were many great things on the horizon when dealing with brain tumors and that my fears and questions were normal and that I was handling it with the right steps. It felt good to be reassured by someone who had seen many in a similar position. This was also the first time I heard about Gamma Knife, although it was mentioned as a procedure not necessarily an option.
I honestly can't tell you most of what was talked about in that conversation but I do know it was a turning point for me in my journey. Some of the things he said to clarify things, got me to thinking and although it wasn't his intention, it ultimately determined my decision to not do the biopsy at this time, to seek a second opinion, and to explore Gamma Knife further. I know we will probably never speak again and that he probably doesn't even remember our conversation in the thousands he's probably dealt with, but he was my angel that day.
Friday, August 24, 2007
The time had come. It was Friday around lunch time and I was driving home to pick up my husband so we could go to see the neurosurgeon for the first time. I was nervous, I'll admit it. I really had no idea what I would be told when we were in that room. I think the following journal entry that I wrote says it best:
Realm of the Unknown
Well, it's been about 36 hours now since I was told that I have a brain tumor. I think I've probably experienced every emotion known to man during that time except fear. For some reason that has just never crossed my mind yet. Although I'm sure it will before it is over. I don't have a lot of information still on the tumor but from what I have been able to gather, there are worse tumors out there but it has its own challenges. Depending on size, the tumor can be removed but this type of tumor tends to return. I am guessing this won't be an option for me since they stressed that it was a large tumor. This probably means that it's something I've had for a very long time. The problem with large tumors is it is nearly impossible to remove it all without causing brain damage and they tend to return in the malignant form. This is just all things I've put together nothing official but it's what I've been able to find. I'm not really sure what all this means yet but gathering things together I see odds somewhere between 6 months and 15 years depending on various variables. Don't worry, I don't plan on going anywhere any time soon and I've proven many times that I like to go against the odds so don't worry about me until I have something official. I will give everyone a warning though that if there are a bunch of really weird posts from me in the forums, it's probably that I'm having some emotional times and I apologize if I end up short with anyone or anything along those lines. I should have some answers in less than 24 hours so I'll let you all know what I find. *Huggles*
I think the whole tone of that entry said exactly how I was feeling as I drove home that night. However, being the person I am, I never wavered and we trekked to the doctor's office. I sat and filled out the book that they required concerning symptoms and other health issues. I'm sure I forgot things on it but my mind wasn't exactly on filling out paperwork. Unfortunately, it didn't take me long enough because it seemed like hours waiting for them to finally call us back to a room and even more hours before the doctor came in. (I think it was only about 30 minutes but it seemed like a lot longer than that.)
When the doctor came in he asked how I was doing and the only thing I could think of was "Like I just got hit by a freight train." He smiled and sat down beside me. He asked questions about possible symptoms including headaches, weaknesses in my left side, dizziness, etc. I answered as honestly as I could. Yes I used to get headaches but I cut down on the caffeine and they went away. I'm right handed but my left is a normal non-dominant side. Only dizziness I usually experience is caused from either getting up to quickly or a rapid change in my body temperature... He acknowledged that none of those things were related and put me through a series of tests to see if there were any "hidden" symptoms that none of my other doctors had seen. When he was through, he pushed his chair back and gave a slight smile.
"I believe you have a Grade One Glioma that has probably been there since you were very little and you are probably 30 years from finding it if not for the MRI."
Those were really the only words that needed to sink in. My mind quickly raced to the things I'd read and I was nearly relieved to tears. Of anything he could have told me, this was the best I could hope for. I did ask him what my prognosis was sitting as I was with no symptoms. He really couldn't give me an answer. Without a biopsy nothing could be said for certain therefore no prognosis could be made. At this time, although within my limits, I was agreeable to the biopsy. This would later change but that's for another entry.
He asked me if I had seen the MRI scans and I acknowledged that I had not. He took me in to another room and I was able to see for the first time the tumor that was present in my head. The approximate location is if you put your left finger in the middle of your forehead and slide it just to the right of your nose and then put your right finger just above and behind your temple (just in front of your ear), where the two fingers meet is where the tumor is located. It is approximately 3 cm by 2 cm in size and has very defined borders. (This is a good thing) An area the size of a softball was a lighter shade of dark and he told me this was swelling that was present. (I didn't realize at the time but I did later that this was the area my GP was seeing and thought it was tumor.)
He said because of my young age, the fact I have no symptoms, and its location very near the motor strip; he felt our best current plan was to do the biopsy, then watch it for signs of further problems. If the biopsy showed otherwise, we could come up with a more definitive plan following that.
We then spoke a bit about the biopsy: overnight stay in the hospital, general anesthesia but we can attempt it with local, at least a week off work, small burr hole, etc. After discussing the biopsy, although not real comfortable with it yet, I agreed we could look into it following harvest. My husband works on farm machinery, it is his busy season, this was not a good time for surgery. He agreed as long as if I had any symptoms of left side numbness, weakness, headaches, or seizures I notified him immediately and agreed to immediately do a biopsy. It made me relax even more knowing this wasn't something that HAD to be done NOW.
We had discussed everything my stressed brain could think of at the moment so we headed for home. As I was walking out of the office the look of relief on my face had to be apparent. I was so relieved I was having difficulty breathing because my body was confused on whether it should laugh, cry, or scream. I was absolutely shaking. I think I handled the bad news that I had a brain tumor better than I did the good news. At least I was ABLE to react to the news about the tumor. I truly felt at this point that if there was such a thing as a good brain tumor, I had it.
Although I knew we were far from through this thing, I at least had hope that this was not going to interfere with my life quite as much as I had originally thought.
This entry could as easily be called "Scaring Those Around Me" but that's not five words so I had to come up with something that is just as meaningful. *smile* At this point in time, I was terrifying those closest to me. They were expecting me to have a breakdown at any time or at least show fear. I was doing neither. I was nervous, that was obvious, but the attitude of "If it's meant to be, then I'll cross that bridge" was really not what many expected. You see, it takes most people many years to accept the concept of death. However, I accepted death at a young age. It's all part of the circle of life and although I don't want to leave those I love behind, I'm not afraid of it. If I didn't have a young son, I would be facing this with a much easier heart. But I know that God will provide if my journey here is complete.
I think the first paragraph gives a pretty good idea of why people were worried. I was taking this with a firm attitude and a strong mind. I have things to do, but I will get them done, I'll make the time. However, Friday morning I believe I terrified my family and co-workers even more.
That morning, I gathered two of my co-workers and passed on information that I felt was important and no one else knew. I gave them my passwords so they could change my outlook out of office and check my email, I told them how to do routine tasks that I do on a daily basis, and I updated them on my current projects. Why did I do this? Well, you see, at this time I did not know what the doctor was going to tell me. For all I knew he could tell me I had six months to live with surgery. As a matter of fact, this is the very dream I had the night before and it truly seemed real. With this in mind, I felt I needed to get as many preparations as possible out of the way now, while I had a clear mind. That's exactly what I did.
I wasn't preparing to die, I was preparing to be gone for several weeks. I wasn't preparing to be told it was over, I was preparing to be faced with more than I could juggle. Besides, I'm not afraid of dying, I'm afraid of dying without my family being prepared.
Thursday, August 23, 2007
I love my online friends. Many of us have been through many ordeals together from illnesses and deaths to fighting depression and handling loved ones. Some I have known for many years, others for just a few, and still others I've met in real life and become even better friends with. I frequent some of these groups and even a short absence would make them wonder, so I knew I needed to at least let them know something was up. Others were not only good friends but they have a connection directly with God, for when they pray... he answers.
I made the decision that these groups needed to know. I posted a few threads via posts, journals, or otherwise telling them of my newest dilemma. As I knew they would, prayers immediately went up and the overwhelming sense of calm that overcame me told me that I would be taken care of. It meant a lot to me to know I had so many wonderful souls out there praying for my good health. My online groups may never fully know how much they mean to me, but the give me a new existence each and every day.
Besides informing those who know me unlike anyone else, I spent a lot of time researching all I could about my tumor. Honestly, I was probably better off not but it was the part of me that needed to know something, even if it was the wrong thing. The information I was finding was so varied in its results I wasn't sure what to believe, but what I did know was that the numbers I was seeing was indicating 6 months to 15 years. Now I kept reminding myself that those numbers are for people that find this thing because they had symptoms that caused them to have tests. Here I was having had no symptoms. It didn't necessarily make me feel better but it helped me keep my positive attitude... the attitude that was scaring many of the people around me.
Considering my Grandma had passed away with a malignant brain tumor less than a year prior and I had a Great Aunt who was fighting a metastatic brain tumor and was just hospitalized, I really was dreading telling my parents that the MRI revealed a brain tumor. Now each of the three brain tumors are very different in origin and survival but I was beginning to understand that brain tumors are all terrifying in the eyes of the onlooker.
When I awoke the morning after finding out I had a tumor, I was dreading the day. Not because of what I had or the unknown in the air, but because I had decided I needed to tell my parents. Things would be horrific if they found out "through the grapevine" and this was something they needed to hear from me. So I left a bit early that morning and drove the 6 miles or so to their house.
They knew something was wrong the minute I pulled into the driveway. My Mom asked immediately what was wrong and I just calmly told them to sit down. How do you tell them their daughter has a benign brain tumor? Cut and dry, pulling no punches, and let them know everything you know. That's exactly what I did. Both of my parents took it about as I'd expect. My Mom did everything in her power not to cry but you could hear it in her voice she was on the edge of it the entire time I was there. My Dad was in a state of shock. Probably over the still open wound of losing his Mom and now me throwing a curveball at him. My Dad doesn't handle medical things well, so it was about as I expected.
We talked for a while and my Mom did her thing by writing down what I knew so she could do her own research. As I'd already found out, there wasn't much to go on to find out what I really had. It was difficult but I was able to leave that morning with a clearer head than I'd had and really the remainder of the day wasn't to awful bad.
Wednesday, August 22, 2007
When I finally got home that night, I was shocked that I didn't have the "curl in my husband's arms and cry" breakdown that I expected. I'm always very strong in the heat of the moment but as things start winding down, I usually break. Instead, I got home and asked him if he was hungry and after hugging for several minutes I pushed away and made some lunch. A bit uneventful but necessary for my mind.
After a while we began talking about the future. Whether or not that future included me, I needed to let him know how I felt about certain things. I made sure he knew that my primary task over the next several weeks was to get my affairs in order. I realized that some of the things that had been on my list to "do when I have time" needed to get done now. Just talking about arranging funerals, writing living wills, and teaching him how to run the finances took it's toll on him emotionally but it was all things that I needed to get out at that time. It felt like my mind had gone into overdrive and I had to get all of it done... and now. (Just so you know, I am still working on these things so I did not go crazy but I am working on it and that's more than I was previously)
While those topics were difficult, they were things that really did need to be done regardless of whether or not this tumor was deadly. The next topic I brought up to him was much more difficult. I have always told John that if something were to happen to me, I want him to look for someone that will take care of him and make him happy. All I ask in return is that he don't go against the values I hold so dear and that he bring me a single red rose on my birthday. That he had heard enough times that it didn't affect him but now it was included with two more questions. "Do you still want to have THE operation?" (We had been attempting to conceive child number two for almost two years when we received this news. It had been decided when we started, that in December of 2007 he would have a vasectomy regardless of whether it worked or not. Thus the events leading up to this question.) I reminded him that if something happens to me, his future wife may not have children and wish some of her own. Therefore, did he still want to do this knowing I have something that is definitely wrong with me? (He would later tell me he still wants to because he felt he is done if he couldn't have another with me.) The second question I asked him was along the same lines in a way. "Do you wish to be buried with me or should we just get a single plot?" I'm sure this one floored him more than the other but these are questions I was truly thinking at this time. I'm one that likes to be prepared and these are all questions I felt needed answered.
Eventually, he got me talked/questioned out and I gave up for a while realizing he wasn't as ready for this conversation as I was. Regardless, it was nearly time to pick up our son from the sitters so we needed to both calm enough to do that. I acknowledged that a pointless drive in the country sounded good so we did and talked more as we drove through the cornfields.
We then picked up our son and had to pretend that everything was ok. I didn't want to tell him anything until I had answers myself. I'm glad we waited and he's taken it relatively well. Not sure if it's because he doesn't understand or is truly ok but we'll get into that another time.
Anyway, that night after I put our son to bed, I finally had my first break down about it. I sat on the couch, curled in John's arms, looked up at him and asked him to please wake me from this nightmare now. I would go on to repeat this several times and the tears flowed for a short time as well. I'm not the "full on tears" type so this was unusual and really I can admit it's the only time since the tumor was found that I've had this reaction. I know that other things were said during this time along the lines of, "I need 10 more years" and "Why are you doing this to us now?" and the determined "I will dance on my 60th wedding anniversary" but after around an hour, I decided it was time for bed.
I had a fitful sleep that night for various reasons. I woke a few times just to curl up in John's arms, asked a few more times to be woke up, and thought over every event of the last 24 hours several more times. It was then that a horrible thought hit me. I had agreed for my chiropractor to put me on a prayer chain... What if this fact got back around to my parents? I didn't want them to find out that way. Therefore, I made one of the toughest decisions in the early part of this and decided to tell my parents the next morning. Most of the remainder of the night was working out in my head how to break the news to them.
I did make one more phone call on my way home that afternoon. (Don't worry I used a hands-free device) I called my best friend of about 15 years. Her and I had been through a lot together and it just didn't seem right that she shouldn't be one of the first people to know.
Ok, detour... I can see the question already. Why did you not tell your family first? Your mom? Your dad? Anyone? Well, you see, at this point in time, my goal was to wait until I'd spoken with the neurosurgeon to tell them so that I had answers to the many questions I knew would be asked and so that I had a plan formulated in my mind. I knew how all the above people would react and I wasn't ready for that. These plans would change a bit but I'll explain that later.
Back to my best friend. I know that I terrified her when I called her in the middle of the day. I never do that. But when I asked her if she was home, if she was alone with her kids, and then told her to sit down, I know for a fact I had her wondering what in the world was going on. I proceeded to tell her what had happened that day. I can't honestly tell you if she was surprised at it all, scared about it all, or just in shock. We really didn't talk all that much because we were interrupted by my husband but I do know she was concerned and it bothered me that I didn't have a way of easing her fears. This wasn't our first rodeo together so we both knew what we were up against and that I would be seeking her out a lot in the next few days.
Sure enough, her and I spent several hours on the phone the next day tossing every possible scenario out there and determining how to handle it. She didn't freak out on me when I'd get into my modes of, "Will you take care of my boys for me"and "Please make sure John doesn't do something he'll regret". She knew it was my fears vocalizing in my own unique way. We weren't best friends just because, there was a reason. She may never know just how much she means to me.
A few times over the morning of August 22nd, I had to make contact with my boss to let him know that I was going to be a bit late and eventually that the news was not good. You see, I work for a small but wonderful company. We have always been very close knit even though recent acquisitions has left us longing for the old days. There are five of us that work in the IT department of our company. Because of both the nature of IT and the nature of our company, we are all very good friends. This is why I decided to tell not only my boss but my immediate co-workers what I had found out that morning. Besides, I was taking the afternoon off and they'd be asking questions.
I called my boss on the way to work asking him if he'd be willing to set up a meeting with everyone for around 10:45. I could hear the concern in his voice when he asked if everything was ok. I had originally decided that it was better for them to all hear it in person from me, but thought better of it and told him what I knew. I knew by the silence on the phone that I had probably made a good decision if the other reactions were like this.
I have to give my co-workers credit, when I waylaid them with the news, they quickly regained their composure and started asking a lot of questions. Of course, I didn't have answers for most of these but it got my brain into the mode that I was able to use their questions to formulate my own for when I would be able to see the neurosurgeon. It helped talking things over with them and it reminded me that I was needed in more places than just home.
I spoke briefly to a friend in HR after leaving my immediate co-workers. I had some questions for her concerning benefits so it was probably more out of necessity than anything. However, with my questions answered, I was able to drive home with a mostly clear head.
I would return to work on Thursday and Friday as well. My co-workers frequently tried to send me home but I insisted that I was better off busy than at home. I found out late in the afternoon on Wednesday that I had been scheduled for Friday afternoon with the neurosurgeon. The moment of truth would not be far.
After getting off of the phone with my husband, I quickly dialed up the office of my chiropractor. Yes, you read that right, I dialed my chiropractor. They told me to come on in and they'd squeeze me in.
Ok, I realize this will take some explaining. In April of 2006, I suffered a whiplash injury. After working with my GP for six month, I finally took the advice of a friend and went to visit a local chiropractor. Now I had bad prior experiences with chiropractors but I was ensured that this one was different. Sure enough, he uses the activator and within two weeks I was feeling much better and without the tell tale "bruising" that I'd gotten from others.
Anyway, over the year that I'd gone to him for treatment, we became pretty good friends. I even ended up recommending my husband go in for treatment for hip issues he'd suffered from for over 8 years. He was able to get him feeling better in no time at all. So now, not only did I look at him as a friend and confidant, but so did my husband.
I guess I will now address why I had THE MRI in the first place. My son and I were playing catch in the yard one afternoon and he threw a ball that took a short hop. Needless to say, I am no longer 15 and didn't pick it up like I used to in my playing days. I was popped in the left side of my face with the ball. I had a nice fat lip and the right side of my face decided to develop a complete numbness. (Almost like you came from the dentist only over the whole right side.) The numbness didn't go away. Not wanting to take the chance that the numbness was being caused by a nerve in my neck, I visited the chiropractor with my dilemma. This started the cycle of seeing him, my GP, and eventually a neurologist and rounds of ibuprophen, aleve, and prednisone to attempt to remedy the problem. They all believed it was an inflamed trigeminal nerve but when it didn't seem to improve, it was agreed it'd be best to make sure that is the cause. Thus, why August 22nd I went in for the MRI that changed my life.
So back to the chiropractor... Being the wonderful guy he is, he had touched base with me to see how things were going when he could. That was why I found myself driving to his office just minutes after being told I had a brain tumor. Little would I know, that there was more fate working that day than I'd ever known.
They worked me in, just as promised and I was a bit nervous as I sat down across from him and said, "Dr. I've been told I have a benign brain tumor." His reaction was very professional but I could see the concern in his eyes. We talked for around 20 minutes about what was found, where I'd have to head with this, and what it meant. As an example of the type of man he is, one of the first words out of his mouth was "can I put you on our church's prayer chain?" I was, of course, honored that he was willing. The instinct I would develop over the next several days was to hug every one I saw and it started here.
The next day, stress had caught up with me and my neck decided it didn't want to cooperate with its tell-tale creaking. Therefore, I saw him again on Thursday, only this time was for an actual adjustment. We talked quite a bit about how I was taking things during the treatment and at the end he decided I was mentally able to handle the news he was about to tell me. On Wednesday, he was dealing with demons of his own, for the night before he had been in an accident where a man was killed. It was no fault of his, but we all can imagine how hard it must be to have to deal with something like this. The fact he had listened to me the previous day and had been the friend that I'd come to see him as, confirmed that he is one of the best doctors that I've ever had the privilege of knowing. He told me my attitude was a reminder that life goes on and God gives us our own battles that we must face.
I would find myself valuing his judgment and opinions on several issues in the future and continue to look at him as much more than a doctor.
My husband (John) and I were married on October 5, 1996 when I was 17 years old. We've been through a lot together including near impossible budgets, raising a son when we were "doomed to fail", and most recently infertility. Now I sat in my car trying to think about the best way to tell my husband that I had just been diagnosed with a brain tumor. I mean just the words "brain tumor" sends a chill down everyone's spine. It was even harder since we didn't really have a lot to go on. Would this take me in 6 months or 15 years?
After working it out in my mind for a good 10 minutes, I finally picked up my cell phone and dialed John's work. They tried paging him and he did not return the page. He knew I would be calling him so I was pretty sure he was outside. (He works in farming and it was the very beginning of harvest so I knew he was busy.) She asked me if I wanted to pass him a message and for the first time since hearing, I had to at least let on the seriousness of the situation when I told her it was an emergency. She sent me to his manager where we again played the "do you want me to pass him a message" game. However, this time I was talking to someone who knew us well. His manager was the best man in our wedding, he knows how close John and I are and he knew that I was going in for an MRI some time this week. I think my exact words to him were, "Andy, I need to tell John this in person. I have a brain tumor." Probably not the best way to tell him but now the seriousness of the situation was out.
While he was going after John, I realized that was the first time I had used those words. I had carefully managed not to say the words brain tumor during my GP visit. It was just something I was not yet ready to admit to myself. When John got to the phone, everything I had practiced went out the window. "John, it's worse than we expected, I have a brain tumor." I knew that the immediate silence on the other side of the phone meant that I had totally floored him. I am usually able to take things very well while in "the heat of the moment", it's later when things calm some that I have my problems. John, is different. He doesn't take to being blind-sided as well but he does manage it better than most.
When silence continued, I told him "I love you" and then told him everything I could remember about what the doctor said. I probably overwhelmed him with information but I needed to talk at this point. Anyway, we agreed that we'd spend the rest of the day at home together. I had some things I needed to do in town then I'd drive home and meet him there. I asked to talk to Andy again and I begged him to make sure John was ok to drive before letting him go home. It turned out not to be an issue because Andy drove him home for me. He probably still doesn't know how much that meant to me.
Oddly enough, the song that came on the radio when I turned the car on to leave the parking lot of the doctor's office was "I Go Back" by Kenny Chesney. The line that has passed through my mind many times in the past few weeks... "Now Only The Good Die Young stops me in my tracks". It really is amazing how a song can grip you by the heart and both terrify you and give you hope. As I would later tell my husband, "Only the Good Die Young so I'm safe for a long, long time."
After telling my husband, my morning was not yet complete. I would go on to talk to my chiropractor (it's a long story wait for the section), my bosses, a friend in HR, and my best friend before I got home that day around noon. I will talk about those discussions in later posts. For now, this is long enough.
Even though it's been almost four weeks, everything seems to be very vivid in my mind. It had been a rough week having to deal with doctors and getting the MRI set up with all the proper tests. I really hate dealing with doctors and this incident was no exception, but I'll get into that and the reason I was having the MRI in the first place in another entry.
Anyway, we finally had everything sorted out I went in on a nice Wednesday morning bright and early (7:45 AM) to have my MRI done. I spoke with the tech for a while before and we agreed that we'd do as thorough a scan as possible on the trigeminal (the reason I was there) without contrast and would only do the contrast if it seemed necessary. The MRI was no big deal. MRI's are pretty minor just a bit noisy and boring. I can go into MRI details another time for those that are like me and like to know everything they can about something so that there are absolutely no surprises. I had been in there for several scans and probably 45 minutes when I didn't hear the tell-tale "Ok, Amy, that one's over, is everything ok?" I was starting to get worried as it didn't come for what seemed like an eternity. I was actually beginning to think that they forgot about me and went to lunch or something! But, alas, a few minutes later they came in and pulled me out of the machine. Thinking I was done, I was relieved.
It was not meant to be that way. She proceeded to tell me they had sent my scans to the on-call radiologist and that he had said it would be to my benefit to do the contrast so that we didn't have to do this again. They agreed to do it with a simple injection and we'd be done. I agreed. (I'll explain the problem with the contrast another time. If I put all the little details in now, this will be fifty pages long.) They did the injection, finished the scans, and I was allowed to go change. However, she wanted me to wait for her to speak with my doctor. I had MRIs in the past, this was not normal. This was sign number two that something was wrong. I wasn't sure what, but something.
Now I should tell you that based on my symptoms causing the MRI, I now immediately began to believe that the worst outcome I had researched was indeed the diagnosis. In my research I decided that there was a chance that I had MS (Multiple Sclerosis) and I had decided that I could live with that if I needed to. So, although I now knew they saw something of concern, I was not near as nervous as I probably should have been.
Sure enough, after about 10 minutes waiting for her to return, she came out and told me that my GP (General Practitioner) would like to see me before I went back to work to discuss the results. My thoughts were confirmed that this was either what they had originally suspected in a hematoma or what I suspected in MS. I went to my car and called my husband to let him know what was going on so far. He asked me if I wanted him to drive 30 plus miles to go to the doctor with me and I assured him I was prepared for this and I'd call him when it was all said and done. I will now admit it would have been nice to have him there but I'm not sure I would have been able to handle the words the way I did if he was so maybe it's better this way.
I got to my doctor's office around 9:20 and waited for them to call me into a room. I knew when he walked in that the news was not good but, holding on to the theory that I knew what he was going to say, I remained calm. That's when he told me, not that I had MS, but that I had a brain tumor. I think it took quite a bit of time for the words to sink in, then I laughed. Yeah, I laughed. It was the one possible diagnosis that I had immediately dismissed as not possible when I had done my research. He went on to tell me that it was a large, benign tumor in the right frontal lobe of the brain. He said that it was unrelated to the reason I had the MRI in the first place and that obviously my brain had been doing it's job because I was a normal, healthy person that had obviously no problems caused from it. At some point he also told me that it was called a Glioma.
Unfortunately, my GP is not familiar with brain tumors because I remember him vividly telling me it covered a large portion of the frontal lobe of my brain. (Don't worry, he had his understanding incorrect, it is not that large.) At the time, it obviously terrified me, but looking back I realize that he was probably seeing the swelling (both tumor caused and from the trauma causing the MRI in the first place) and thought the whole thing was tumor. I'll forgive him no doctor can know everything.
Finally, he mentioned that with technology now-a-days it should be able to be safely removed and I gave my normal reply of "there will be no surgery". (Just another thing I'll have to explain some day) He nodded, having been through this with me in the past, and asked if I'd at least see a neurosurgeon. That I don't have a problem with so that was agreed on. In an attempt to make me feel better he said something to this effect: "Usually it takes a long time to get into a neurosurgeon, but I don't think we'll have any trouble getting you in very quickly." I looked at him in shock at this statement. I replied with, "That didn't make me feel any better, Doc," and laughed yet again. I wanted to hear, "It takes a while to get into a neurosurgeon so expect a date 3 to 6 months from now. It shouldn't be a problem."
We made some small talk because I think he was making sure I was ok, and I left his office. I remember thinking to myself on my way to my car that I need one of two things. 1 - I need enough time to raise my son or 2 - I need enough time to get all my affairs into order so that I can ensure that my husband and son are taken care of. I'm sure that's not the typical response of someone 28 years old who was just told something that would change and possibly take their life. However, you'll learn in my blog, I'm not the typical 28 year old. My next task at hand was talking to those that had a "need" to know what was going on and that's what I had to focus on for the time being.
This is getting long so I'll get into the story of telling those close to me in another entry. There were various people who "needed" to be told and each had their own way of dealing with it. However, like I said, it's not really the time for that.
Tuesday, August 21, 2007
I can't think of any better place to start than with an introduction so that you know who the sometimes crazy person called DreamCatcher is. I'll admit that I don't normally consider myself a blogger but a friend mentioned it and I must admit that I liked the idea. If for no other reason than to be able to just randomly discuss the things going on in my life.
So, about me... My real name is Amy and I am a 28 year old that lives in the central
Anyway, I enjoy several things including Harry Potter, a Harry Potter related site called Plano Hogwarts, the online game Puzzle Pirates, reading, gardening (even if I do have a brown thumb), playing sports out in the yard, writing, Chicago Cubs, and just about anything different I'll try once.
So, what possessed someone this boring to decide to create her own blog? Good question. Well in short the answer is that my life changed forever on August 22, 2007 with five little words: "You have a brain tumor". I obviously have a lot to fill you in on since that was almost four weeks ago but don't fear I won't do it all at once. Any time you see the word "Beginnings" in the Title, you'll know that it's a flashback.
What do I hope to accomplish? I hope that it will help me cope with the future, help others through similar battles, and remind everyone that life is short so don't forget to "Thank the lord, every day, for just another day in paradise". Oh, and the final thing is to see if I really can keep a blog going with every title staying with the site's theme... just five words. (The exception will be those in the "Beginnings" category. I will not be counting the word Beginnings in the title count but the remaining will be five.) I do hope I'm up to that fun little challenge that will keep me motivated.
Ok, I'm off for now. I'll fill you in on much more as we move along. *Huggles*
(Quote is from the song "Just Another Day in