Monday morning (11/13) around 2am I wake up with the worst headache I’ve EVER had. A few more hours of sleep and I know I HAVE to go into work this week, we are prepping for a big conference coming up and have some of my field in town this week. I suck it up and take a shower and head into work. All day my head is hurting. Some Ibuprofen, seems to take the immediate pain away, but all day I have such a headache. Come Tuesday, same story. Take some meds to make the headache go away but not much relief. I have a dinner scheduled with the AC’s in town Tues night so I make the best of it, not feeling well. I never pass up an opportunity to see my team when they are in town.
Wednesday morning I woke up with a worse headache and my stomach started to feel bad and I thought I might be getting my first migraine. I stopped by RiteAid that morning to get some Migraine medicine to try out. Coffee, Nutrigrain Bar and Migraine medicine I tried to push on. It was not even 8:30am when I couldn’t even move sitting at my desk without thinking I might throw up if I move to fast. After multiple people coming by asking if I was ok, including my boss I just decided to walk about 10 feet around the corner to our “quiet room” where I could sit on a comfy chair in a room with no one around. I was feeling pretty horrible and then stood up by the sink and threw up. At that point I knew it was time to go into Urgent Care. Lucky for me, Victor had the day off and was able to be there in about 10 minutes to come pick me up. We headed to the Mission Viejo Kaiser because it was close to work. They were great and the Dr. there gave me medication to try to treat my migraine. But I was still throwing up so she was also giving me Zofran to stop the vomiting. It didn’t work all that well. I was giving lots of different meds to try and finally I stopped throwing up and felt a little better. Headed home with some meds ready for bed.
Thursday morning Jack and I were home and all of a sudden the feeling was back. This crazy headache, my head was spinning and I was throwing up! I called Grandma to come get Jack and had Crystal leave work to come take me to urgent care. This time I headed to the Urgent Care in Santa Ana. Kaiser has been so good and they were pretty fast considering. I waited in Urgent Care where they gave me some meds. I made Crystal go back to work and promised I would call her later. The Dr. the day before had ordered a CT Scan of my head to check it out since I had never had any head issues before. So Thurs at Urgent Care they told me to go get my head scan. I sat in the waiting room at Urgent Care for almost an hour waiting for my CT Scan. It was pretty quick once I was there and painless. Fast and easy scan. I was back in a room waiting for the Dr. to come in. Can’t remember his name, but I will never forget his face when he came in and said, Mrs. Gonzalez, looks like you have a tumor in your head.I mean, really? That’s how you tell people? My first reaction of course was, am I going to die, is it cancerous? Oh shit, I need to call Victor. The Dr. tells me that most of the time these kinds of tumors are benign. That being said, they wanted to take me in an ambulance over to the Anaheim facility where they could treat me better because they had a Neuro Department there with an MRI machine. I gathered myself as much as possible and called Victor. Hunny, I need you to leave work and come and get me. As I started crying, “I have a tumor in my head, I need you to just get here”.
Because I knew Crystal was the closest and waiting to come pick me up and take me home, I called her and said, “Victor is already on his way” and she said why? Again, trying to keep it together said, “I have a tumor in my head and they are going to take me to the hospital”. Crystal was closer and ended up getting there about 2 minutes before Victor. They wanted to take me in an ambulance but I didn’t think that was needed with both my husband and my best friend here with me. So I was told I could ride with my husband, the ER would be waiting for me. The amount of confusion and questions and emotions running through my body at this point was overwhelming. As we walked out to the car, Crystal got into her car to meet us over there and Victor and I got into our car to head over to the hospital. I will never forget that moment. I was like, ok, let’s drive. And Victor needed a moment to take it all in, the look on his face was a look I will never forget. It’s like someone just told him the most terrible news ever. The same kind of face that he had when we had to say good bye to smalls and put her to sleep. He reached over and put his arms around me and just said I need a minute and just hugged the hell out of me for a minute. It was nice and comforting. I obviously don’t get that often, for good reason.
We headed over to the hospital, it was about 3:30 pm so the freeways were full of traffic. 5 miles down the freeway in this situation, it felt like it took us hours to get there. That wasn’t the case, it just felt like it. On our way, I called Jacquie to tell her what was going on and of course she said she was on her way and would meet us there. I didn’t think it was necessary, I wasn’t sure what was going to happen, or even what was going on at that point, but like I would have done, she said, I’m on my way, see you in a bit. That was that. We arrived at the ER and within the first few minutes was taken back.
The next few days felt kinda blurry. For good reason I guess. I was in a lot of pain in my head and they had me on morphine every 6 hours. From the nice little room in the ER with Victor, Crystal and Jacquie standing around waiting for the next moves, to my own room, admitted for the next few days. There were a lot of phone calls, more pain meds, lots of doctor’s visits. Some good food, pain, less pain, morphine every 5 ½ hours… Doctor’s coming in and telling me that the tumor in my head isn’t the reason I am having these headaches, Neurosurgeon telling me otherwise….
So yeah, a rough few days. Trying to figure out why I am feeling so bad and trying to understand all the madness. The majority of the doctor’s told me that the tumor is pretty normal in people and it doesn’t normally cause issues. Then I finally spoke to a Neurosurgeon who made me feel normal again. He told me that most likely it was causing the headaches considering I have never had these headaches before. No one could answer for me, how long have I had this, when did it get there, what’s it going to do to me, are you going to take it out. I had so many questions and no one seemed to have answers to them.
Finally on Saturday evening I was ready to head home with meds in hand. Lucky for me Victor’s parents had just come to visit me so they were able to take me home. I was happy to be home but totally unclear of what was going to happen next. The next few days at home I was still having headaches and not feeling well. Monday 11/21 I was back to head pain and throwing up. So I went back into the ER. They tried to get a line in my veins so they could hydrate me because I was pretty dehydrated. 4 nurses and 9 pricks to my arms and hands later they finally were able to get an IV in me!
The next few weeks I spent trying to understand things and visiting lots of different doctor’s, learning and reading about my tumor online. Some doctor’s called it a tumor, some a cyst. No one seemed like they really knew what it was or IF it was causing my pain.
Tues 11/22 I woke up with some very blurry vision and not being able to see well along with the smaller headaches still, but nothing like the pain I had been in before. My appt the next day with an Optomologist. She ran some tests, dilated my eyes and then told me I had swollen optic nerves. That was the reason for the blurry vision and the double vision. But again, at this point she didn’t think it was related to the tumor in my head. Haha. This world.. days before, you tell me I have a tumor in my head and now I have all these things going on but somehow none of them are related? A bit hard to swallow if you ask me.
The Dr. ordered me to get a spinal tap to see what the pressure in my head was. Meeting with the Neurosurgeon he said that if the pressure was low then we would do surgery to take the tumor out, if the pressure was high it could be a pseudotumor (sudo tumor). A pseudotumor is when your brain thinks you have a tumor but there is not really one in there… At this point so many people have said so many different things that I was learning a lot! The next few days I was scheduled for a spinal tap in the office of a new neurologist, Dr. Markus. I was a bit nervous about it but figured it would be cake for me because I’ve had two kids, two C-sections where they had to numb the bottom half of my body the same way. Little did I know this spinal tap was not going to be a fun one! As I sit at the nurses station waiting to take my blood pressure, I see a cute young doctor in a white coat walk into the office next to me and say, “Hi, I’m Alex, I am your resident for the day”. The Dr replies “Hi Alex, ever done a spinal tap?” to which Alex says “no”. “Well you get to today” says the other doctor. The entire time I am praying that’s not my doctor on the other side of the wall, but I can’t tell at this point. Then the Doctor continues “She’s on the larger side….”. The blood pressure cuff and machine attached to me start to go off, so I don’t get to hear the rest of that conversation, but once he said that I was almost sure it was my Dr.
The nurse takes me back to a sterile room and explains what is going to happen, I get undressed and into a gown. The Doctor knocks on the door and in walk the Nuerologist I had meet with and the cute young Resident that was about to do his first spinal tap. OH BOY. The Dr asks me if it’s ok if Alex does the procedure. Of course I say yes, because whatever... someone has to do it so it doesn’t make a difference to me. Plus every resident has to do their first at some point, why not be me right? My Doctor was there to supervise, it would be just fine.
I laid down on the bed in the fetal position for my spinal tap. The Doctor talked Alex through finding where he needed to start and putting the needle in me. The next few minutes felt like it was a LIFETIME of moving that long ass needle around in my spine trying to find the fluid they needed. Every move he made I could feel. Not in the poking me kind of way, but the… I have a needle in your back and keep hitting a nerve in the wrong spot kind of way. It was painful for sure. I laid there and tried not to cry. I prayed that God would give me the patience and the bravery to get through this. After all the outcome of this spinal tap was going to determine if I was going to have surgery to take this tumor out of my head or not! Ten thousand hours later Alex can’t find the spot he needs to be in, so the Dr steps in and takes over. After several minutes of me telling them where my pain was, which leg was hurting, he finally pulled the needle out and said, ok, we are going to have to do it in the Radiology lab under Xray. But that wouldn’t be today, I would have to call and make an appt for it to be done, possibly in weeks from now! My heart sunk in my chest, I just wanted to know NOW. I was in pain and couldn’t see, I wanted this tumor out of me so bad! So what did I do next? I asked the doctor if he could try to do it again, the actual dr instead of the Resident. He said “are you sure you are up for it?”. YES, I am already laying here in a gown numbed up, I need answers now, stick another needle in me. I mean, what the F*** was I thinking? So he said ok! Another long ass needle in my back and away he dug! Moving it around trying to find that spot where my fluid was. He had 4 big viles he needed to fill with fluid! Again, it was painful and tears were streaming down my eyes that was trying to hide. After all, I asked for it, I was brave and needed answers. Ten thousand hours later and again, he pulled it out because he couldn’t find the spot… I was so frustrated. I was going to have to call and make an appt for Radiology to get a 3rd spinal tap at some point. The doctors cleaned me up and left the room and all I could do was sit there and cry. A little bit of pain, but mostly frustration of not having any answers, but had gone through those last 20 minutes all for nothing!!
The ride home was pretty rough, my back hurt pretty bad and every bump felt like a rocky mountain! I got home and called to make an appt for another spinal tap! The Radiology department would use an Xray machine to see where my spinal fluid was, and then insert the needle while seeing where they are going. No one would be going in blindly every again! Of course the next appointment they had available was 2 weeks from now in mid-December. Frustrated again I took the appt and hung up. Oh, what a day that was! That evening Crystal had given me the idea to email my Dr and let him know and see if he could push it up for me! The next day I sent my Dr an email and told him the next appt wasn’t for another 2 weeks and I still couldn’t see well and didn’t feel well, I needed help getting it done now! He changed the request to STAT and it moved my appt up a week! One week was much better than 2 weeks. Everything felt like an eternity at this point anyway!
In the meantime I also had an appt to see an Endocrinologist who had sent my blood in for testing of my hormones back when I was in the hospital. It was time to get my results. Your Pituitary Gland controls your hormones and your vision, so test would show if any of my hormones were jacked up because of this little guy in my head. The Dr was so incredibly nice and was able to explain SO much more to me than most doctors I had seen thus far! Out of the 100% of your gland, apparently only about 10% of it is actually useful and functioning. She explained to me that my tumor was on the non-functioning part of my pituitary gland so that was good news. If it had to be taken out it ideally shouldn’t screw any functioning part up! She drew a brain on a piece of paper and explained where and how my pituitary gland worked and what hormones were affected by it. Lucky for me all of my tests came back normal on the hormone front! That means that my tumor is not affecting any hormones at this point. So from her point of view, I was just going to see her a few times a year to monitor my hormones. If the tumor was going to come out I would see her more often to make sure they didn’t take out any of my functioning part. But as of now, no hormones were affected enough for her to say, take it out. Good and bad news right?
The next week I was emotional, anxious and every emotion in between thinking about having to have another spinal tap. Not to mention anxious to hear if the tumor was coming out or staying in. I couldn’t sleep the night before the spinal tap, all I could think of was how much it would hurt, how many times they would have to poke me and how much I just wanted this all to be over. On the way to the Dr office in the morning my body felt so crazy, my stomach was so upset that I almost threw up. Nerves really had me that day! The lab they had me in looked just like the last time I had an X-ray. The guys who prepared the room for the Dr were so nice and calming, it made me feel so much better. I laid down on an X-ray table on my stomach as the Dr came in. He was so nice, told me all about what was going to happen and the next thing I know there is an Xray of my spine on the monitor next to me. It was cool to see. It was a very EASY process this time. He saw where to put the needle in and poked me. Just like that. Amazing! He was able to tell me right then and there that my pressure was normal and not high, this was not a pseudotomor. He took 4 viles of spinal fluid from me and it was over just like that. I had never been so relieved in my life! It was over, it was easy and it sounds like that tumor was coming out!!!
The second I got home I emailed me Neurosurgeon to tell him about the pressure and I was ready for surgery!! The next few days I was so excited to think that there was an end date to all this madness! A few weeks until surgery (I’m guessing), a few days in the hospital, 6 weeks-ish recovery and back to work by the end of February! I had a game plan, I had a timeline-ish and it made me feel so good and so relived! I was finally going to get this crazy foreign thing out of my head! No more headaches, I was going to be able to see clearly again and I wouldn’t have to worry about it for the rest of my life! YAY!
A few days later I got a call from the scheduling department to schedule my surgery. The first surgery date they had available was going to be 2 months from now… wait, WHAT?!?!? I was placed off of work at this point and all I had to do was to wait for it, 2 months from now was NOT going to work for me. I couldn’t live the next 2 months like that. I nicely told the lady on the phone that she needed to try again and call me back when she had a better surgery date. Haha. So me! Turns out they only do these types of surgery’s twice a month and they need both the Neurosurgeon and the Ear, Throat and nose surgeon to be there as well. So I understand how that would be hard to coordinate. The next day scheduling called me back and had a date one month sooner! That was great news! Surgery was now scheduled for January 11th! That was only 4 weeks from now! It had been 4 weeks since they told me I had a tumor in my head and it was now only 4 weeks until it would be out! I would say all in all 2 months from start to finish was a pretty good timeline!
Finally having some answers and a good game plan I was able to share what was going on with more people. My immediate family knew, but now I was open to telling more people because I knew a little bit more and could share what the plan was. I had a date for surgery and was preparing myself for it! To be honest with you at this point I have everyone who loves me checking in with me on a daily basis. Gosh, you sure know who your friends are and who cares about you when things like this happen! I am so thankful for a handful of people in my life who checked on me. They asked me a billion questions that helped me to find out more about it and understand it. They kept me grounded and even talked me off a few ledges. Some let me cry and just rant about it all and all just reassured me it was all going to be ok! I so much appreciate the people I have in my life!
12/20 About two weeks later my Neurosurgeon wanted me to see yet another specialist. It felt like my vision issues at this point and the minor headaches were the problems I was still having. I was off of work and just ready for this surgery to come and go so I could get back to normal and back to work. This new specialist I saw was a Neuro Opthamologist. He started off by telling me there were only 500 of him in the world, and Kaiser only had a few of them. When things are weird or different people are referred to come see him. He asked me to tell him about my eye issues, starting from when I was little. I pretty much said I didn’t have anything to complain about until about 6-7 years ago when I got my first pair of glasses to see on the computer. Working on the computer all day really messes with your eyes and so I needed glasses to see more clearly. He was very thorough and asked me a billion questions about my vision and if I ever had a lazy eye or problems seeing. There wasn’t much to tell to be honest. Nothing was bothering me and I had never had blurry vision or double vision anytime before the last month after you found a tumor in my head! The rest of the conversation with him was very blurry. He basically told me (his words from his report, cause I don’t remember it clearly.) “This mass even though it’s close proximity and seems to be pushing on your optic nerves, it is not causing any visual loss from the optic nerve standpoint. I do NOT recommend surgery at this time for the pituitary mass if the sole reason to do it is because of visual loss.”
My world came crashing down as did my emotions. I started balling my eyes out, not because I was sad but because I was frustrated. An hour earlier I had a game plan. An end game. A light at the end of the tunnel. A return to work, return to normal life plan. You can imagine how it felt for him to tell me that. The only questions that came to mind at that point were, who the hell are you to tell me after I already have a surgery date and my Neurosurgeon already said we were going to do surgery to take it out? It may not have sounded like that when I asked it, but he basically told me as a Neuro Opthamologist he trumped everyone else……. He even told me that my optic nerves were not swollen, even though the Opthamologist I had seen before him told me they were. So you are telling me that the tumor in my head is close to and seems to be pushing on my optic nerves but it’s not causing the vision issues I am having? That Dr appt did not go very well and I spent the next 20 minutes in a daze. Victor and Jack were in the room with me so I was trying not to ball my eyes out too hard, but I was so very upset. He wanted me to go back to the Neurologist, who attempted my spinal tap, to manage my headaches and to see his Opthamologist that he knows and trusts to test my eyes. I left that Dr appt very confused, upset and I felt so set back.
I had texted the few people I needed to and said we could talk later, I went home, jumped in my bed and cried the rest of the afternoon. The emotions that were running through me were crazy. I was feeling so sad and frustrated. I think everything up to this point I was able to hold myself together for the most part. Just like I do in any kind of thing that goes on in my life. I am strong, I am brave, I am kind of a badass when it comes to this kind of stuff. This one took me down. From that day in Urgent Care when the Dr came in and said, you have a tumor in your head, we are taking you to the hospital to this. I have held my shit together with a positive attitude without too much craziness. Everything I had felt in the last month, I was just feeling it all in one day. In one Dr appt my world had been taken down. I didn’t sleep much that night obviously. I had a billion questions with no answers. I didn’t have a really great explanation to anyone either as to why I was now NOT having surgery to take this tumor out. A week earlier I was finally able to tell everyone who cared about the tumor and that I was having surgery to take it out. Then all of a sudden I had nothing to say. Which doesn’t happen very often with me. I spent the next few days trying to sort it all out in my head. I tried to just take a few days and take it all in, turn myself around and try to get that positive attitude back. This was a really hard one for me. Thank God for my best friend and sister. So grateful for their support every day, every hour when I need it.
The month of January was full of Dr appts, vision tests, and anything to get any answers. The neurologist I am seeing, I don’t think he likes me very much. I get the feeling that when I walk in there, he is like, Oh, it’s Jamie with a tumor, what does she need this time. I was told to go back to him to manage my headaches. He of course says they “could be” due to the tumor or could not be. Referred me to a sleep apnea test because headaches can be caused from sleep apnea. Gave me a “you can try this medication for the headaches”. Basically every day I can take a medication to help with the headaches. I don’t want my end game to be on medication every day so I declined. He did offer a vitamin for the headaches to see if that works. Told me that if the headaches are due to the tumor I really need to weigh my options. Minor headaches or major surgery that could turn out to be taking medication for the rest of my life to supplement the hormones that I might lose.
At this point I am still having minor headaches every day, and my dizziness comes and goes. I have been driving again and moving my eyes all around or back and forth, or flipping my head to see my blind spot makes me dizzy. Just for a moment and then I am ok. Still NOT the normal I want to live with! Vision tests from this new eye dr say that my vision hasn’t changed much from my glasses I already have. Nothing major to report there. A visit to Mr. Know it all, only 500 of me in the world again… does a couple of crazy tests on me where he shakes the hell out of my head and makes me dizzy and then looks into my eyes. He determines that the dizziness isn’t due to my eyes. He says it’s either my inner ear or brain. There is no longer a need for me to see him. My neurologist will take care of my dizziness and headaches. He refers me to an Audiologist to test my ears, thinks I might have vertigo. Tests were perfect, nothing wrong with them and she tells me I don’t have vertigo because my dizziness is more of a rocking motion sickness then a room spinning dizziness…. I could have told you that.
I haven’t had blurry vision for more than a moment in a few weeks which is good news, and the double vision hasn’t really been around either. Which are both things that were keeping me from driving or going to work. So in the hope of getting back to a normal life I am ready to go back to work. This tumor is living in my head now and I do want it out. So it might not be right now or this month or this year, but that sucker will come out. A) I don’t want to live with headaches for the rest of my life. I plan to live a long life and if I have to deal with a headache EVERY DAY FOR THE NEXT 50 years, I will rip the sucker out myself! B) Why do I need to worry about when I am going to get dizzy or when my blurry vision might come back?
So I start back at work next week and am very anxious about the whole thing. I’m excited to get back to work for a lot of reasons! I miss “some” of my co-workers, I want to make sure I still have a job and a future there but I also miss talking to adults and having a purpose, work to do and get done! Making a difference and taking care of my peeps! I’m scared to death to be working on a computer all day again. And at the end of a long draining day driving to Santa Ana to pick up the kids, coming home, making dinner, doing showers, homework… life that happens after a long day of work. Anxious for lots of reasons. What if the migraines I had the first few days of all of this come back? What if my vision goes blurry again? What if I am in a car driving home and I get dizzy? So many questions and if’s. BUT at the same time I am ready to get back to my normal. So we will see how this all turns out. I know in a year from now when I am reading this my life will be different and I will be able to look back on all of this as a learning experience. God will not give me more than I can handle and I do believe that!
I went hiking last week and felt good for the most part. Head was throbbing, probably due to the heat, but no dizziness so that was good news! Yesterday I rode 6 miles on my bike and it felt so good! It gave me confidence that I can in fact do the stuff I enjoy and want to do without this taking me down! Is it the tumor causing all these issues? Maybe. Maybe not. Time will tell. If you are still reading this, thanks for going through this crazy journey with me. Will keep this updated as my personal diary, after all, no one really reads it anyway. But it allows me to get things off my chest and works as a document for my life cause I don’t remember shit. So in 6 months from now when I am suing the hell out of Kaiser for putting me through all this shit, I will remember it. Haha. Kidding.