Tag Archives: neurosurgery

The Appointment That Almost Wasn’t Was Worth the Wait

Posted on January 18, 2011 | 21 Comments

It just worked out that I had a neurology appointment and a neurosurgery consult almost back to back today. The first wasn’t such a big deal but the latter was. It was the six month consult. The appointment that I’ve been counting down to for months. Literally. It was the appointment I had decided would signal if I should go back to Chile or forge forward here.

I arrived about 15 minutes early–just in case there was paperwork as they always say. The receptionist greeted me by name. That’s a problem, you know, when your neurosurgeon’s receptionist recognizes you and no longer asks to see your insurance card because she’s remembered that, too. Then, she looked me up in the system and sputtered, “But…you don’t have an appointment today!”

“That’s impossible. Tuesday. The 18th. At 2:00. I scheduled it months ago.”

“Ah…okay. I see that…Constance* canceled it.” *names may have been changed.

She excused herself to go ask Constance. When she came back she told me that since I’ve been in there so often (see early comment about knowing me by name), they had decided to cancel my appointment, Oh, they didn’t tell you? Come back in three months. Bye-bye now. Move along. Okay…seriously, BYE BYE. I wanted to tell her that it couldn’t be true. I mean, I had just heard my good luck songs in the hospital cafeteria in a strange mix that still included Christmas music. It was a random coicidence that meant that my appointment would go well, but I didn’t say anything.

Now, normally, I’m fairly assertive in situations like that but I think since I thought I “knew” everyone, I mumbled something about having the doctor call me and left. L told me that it’s a problem I have, the not wanting to offend anyone thing. I prefer to think of it as the Minnesota Nice side of my personality, that has been indoctrinated in me since birth, dueling with my bitchy, push and shove, Santiaguina side. One always has to win.

When I was almost to my car, I called my mom and told her what happened, my voice trembling. I’d thought about that six month appointment so much and to have it just not happen and be told to come back was anti-climactic to say the least and almost heartbreaking (thinking about staying in Minnesota–jobless and away from L for three more months).

On the phone my mom was saying, “That’s not acceptable. I want you to march right back up there and tell them that you are going to wait in that office until you see the doctor. Tell them.”

“What if he’s in surgery?”

“He won’t be. Go. Back. Up. There. Now.”

I took the elevator up the five floors, practicing my speech as I rode. I was prepared to walk in with my shoulders squared and announce to the secretary or Constance or whomever I happened to talk to that I was demanding to see the doctor because it’s not MY fault that they canceled my appointment without calling me. Then I saw the nurse, she sensed something was wrong and asked me how I was doing. Not well.

“I had an appointment and they told me it was canceled but, you know, that’s, like, a really big problem because I want to move abroad again and I need to know if I need more scans and when I can start tapering off the meds…”

My voice broke. She smiled at me like she understood. Maybe she did.

“I’ll see what I can do. Wait here.”

Oh. You can count on it.

She came back a few minutes later and told me that like *MAGIC* the doctor had a few minutes to squeeze me in between appointments.

The first thing he said when he came in the room was, “I heard you were crying in my office again. I thought I told you last time that there will be no crying in this office anymore. Right?”

He told me that all my scans, CTs, MRIs, EEGs, blood tests, etc., looked great. I can also start tapering off one of my anticonvulsants. He said he didn’t want me to have another MRI for a year. After that, if it is clear, I can wait five years until the next one. Imagine that! Five years. I’ve had five in six months and I might be able to go five years without hearing the awful clicky-grindy noise of that horrible machine. Why, that would be so normal.

Then he looked at me and said, “Now, go have a great time in Chile with that fiancé of yours.”

And so I will. I bought a ticket. I leave mid-February. Once again, I find myself embarking on an international move. See, it’s sort of this thing I do…

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When Suddenly Doing Something Seems Like A Lot

Posted on December 29, 2010 | 7 Comments

I’ve had an interesting last couple of days. I was telling it all to L over Skype when he said, “Wow! A lot has happened to you.” I replied, “No, correction: normally, I do nothing. So, now that I actually did something, it looks like a lot in comparison.” He nodded sagely like he understood. He probably did. He’s a Cancer and Cancerians are very perceptive and sensitive. Yes…I’m just going to keep inserting astrology ad nauseam.

That begs the question, what exactly have I been up to? Great question! I was just going to tell you. Duh.

First, I have a car! Okay,it’s not exactly my car. It’s my brother’s car, but he’s in Cancún and now I have a car (he hasn’t called since he arrived but we think he’s fine because, otherwise, the kidnappers would have probably contacted us for the ransom). We’ll allow to topic of whether or not I should actually be driving said car up to the DMV when I have to go in and renew my license next week (the thought of that blinky light test is sending shivers down my spine…really). The car means that I am much more mobile than I normally am.

Early Monday morning, I had an appointment with my neurologist. I knew there was a reason that I liked her and I just figured out why. I said in my last post that I was going to ask her if she thought I was healthy/stable enough to return to Chile to live for a while. She said that she thought it would be okay because the medications I’m on – even if I’m not 100% weaned off of them at that point – can be found all over the world. Then, she said as long as I travel with my medical records and consult my neurosurgeon before I leave, all should be peachy. Then, she asked me what I planned to do if I went back to Chile.

“Well, find a job! The market here is bad and I had a good job there and I can’t find a job like that here because I didn’t study that and, well, my fiancé has a good job there too and if he came here he would be starting all over…” The long sentence was punctuated by the fact that at that moment I started to cry.

“I’m sorry,” I burbled, “I didn’t mean to come here and start crying.”

She handed me a box of tissues and replied, “No problem. It’s good to cry.” She then proceeded to tell me that she had come to the United States because her husband had thought their job opportunities were better here but that they had both had to do a lot of things like file for visas and re-do their residencies. That is a lot to handle for anyone and even more if you have been through what I have. She added that she trusted me to make the right decision for me. See? I knew I liked her.

Yesterday, I was sitting at home doing nothing when suddenly I realized that I was almost out of vitamins. Yes, I am a big believer in vitamins. I have created my own regimen based on some research, what I believe are my personal needs and, of course, I’ve talked to my doctors.

That’s the nice thing about having a car. You can be spontaneous. I decided that at that moment I was going to drive to Target and buy vitamins plus some generic Aleve because I had taken the last tablet after I made decaf coffee for breakfast, failed to realize it, and suffered a headache.

At Target, I went to the shortest line where the woman in front of me was asking, “Did you give me my receipt? I don’t remember you giving it to me.”

The cashier, who was underwhelming in all aspects, answered, “I gave it to you and you signed.” She looked confused, but left.

I was busy reading emails from L on my phone when the cashier interrupted my thoughts and told me I owed $14.28. I handed a 20 and then looked at my basket that was still sitting there with all the items. I quickly told him that he hadn’t scanned a single item. He pulled out a big, antique looking calculator and told me that I actually owed $28.28. So, please give him the $14. At that point, he had not made any changes to the computer.

“No, I’m not going to just hand you 14 more dollars. I want a real receipt. Do you think we should call a manager over?” He flinched at the suggestion, but scanned my items, and gave me a real receipt.

I looked at it and figured out that, at least, I hadn’t paid twice for anything, but I wasn’t sure if I had paid for everything.

After that I decided to do something else spontaneous and go to TJ Maxx. It was close and what the heck? I could do things like that because I had a car and spontaneity on my side!

In the store, I found some things that I wanted to try on and because I was on a roll, I did. Leaving the dressing room, the attendant looked at me and asked, “What is that bag?”

“You mean this?” I held up the Target bag which I was still holding for some reason.

She looked at me like she was considering dousing me in holy water and blurted, “I can’t let anyone in the dressing room with a bag from another store and YOU DID IT.”

“Uhm…I didn’t know? And…er…you didn’t say anything.”

It was like I had offended her TJ Maxx professionalism because she looked miffed, “I didn’t know you HAD it.”

Crap. Two thoughts entered my head: A. She was going to ask to look in the bag and then get mad because all the items were probably not labeled correctly on the receipt and I would get in trouble for shoplifting which would totally suck because B. If you get busted for shoplifting you should have 1. Actually done it. 2. Done it with something more valuable than a possibly *free* pack of gum.

I looked at her again and said more forcefully, “You didn’t say anything to me when I entered.”

“I know…so…so…Just DON’T DO IT AGAIN…okay?”

See, how it seems like I’ve done a lot? I agree with my theory that doing nothing for a long time and then suddenly doing something – anything – makes it appear like you’ve done more than you have and apparently makes it blogworthy when in all actuality I’m about as spontaneous as that retirement community Bingo night I mentioned in the last post. Don’t like Bingo? Fine, then Scrabble.

I hope you all have a great New Year’s Eve! Here it is supposed to snow. Obviously! It’s Minnesota.

Who has a resolution? One that is not memorizing the entire astrology encyclopedia I might have just bought?

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When Time to Think and Patience Collide

Posted on December 13, 2010 | 15 Comments

This post is a hodgepodge of ideas, thoughts, and emotions of the last few weeks. I took inspiration from some other bloggers who were somehow thinking similar thoughts to my own.

Moving to a new location, giving up everything you were used to, and starting over is humbling. I should know. I’ve done it. The first time was marvelously planned and unplanned at the same time. Planned because I booked the ticket and unplanned because I had no idea where I would be working. That led to a two plus year adventure discovering who I was through some odd jobs and trying situations and even though I complained about it (my last now defunct blog was proof), I enjoyed it. I met a lot of new, interesting people, and somehow managed to forge a life for myself.

At the time I moved to Chile and started the last blog, I truly believed that I was the only gringa in the world who had that idea. Then, a friend sent me some links and I realized that like with most ideas, someone else had it long before you and already rocks at it. But, I kept at it and met some more awesome people who are still friends today even though we live in different corners of the globe.

Chile blogger friend Alessandra recently blogged about not wanting to fit into the Expat blogger category and I agree. That’s why I changed over to this blog, but Chile was still such a huge part of my life (I mean, how could it not be when I lived there?), and it played a recurring role in most of my posts and the complaining that I was also trying to avoid also starred on occasion because, well, expat life can be frustrating. If you don’t believe me, try it.

The blogger Eileen wrote about saying good-bye to places where you’ve lived and it reminded me of my own situation. I moved a lot as a child. In fact, at school, the other kids would always think I was some kind of army brat, so it’s something I’m used to. However, the move from Chile back to the US and all the medical drama that ensued was almost more than I could take, but I think I’ve been handling it well considering the hand I’ve been dealt.

I’ve had a lot of time lately to think things over. A. Lot. Of. Time. As in, my dad was asking me if the recent blizzard that pounded Minnesota would affect me and I shrugged, “No. I don’t really do anything, so no.”

I’ve come to realize that my life in Chile was good. Right, I may not have had the luxuries that many people in the US consider essential like a dishwasher or a dryer, but I made do. In July, I got the chance to laugh at my parents when L was here and their dishwasher broke. They stood around it as if at a somber memorial and asked perplexed, “Well, what are we going to do now?”

L turned to me and asked, “I take it they can’t wash dishes by hand?” And then we both giggled remembering that in Santiago, we would wash dishes several times a day…by hand.

This has made me wonder if perhaps, I would be better in Chile. At the time I moved there, I was thinking of it as a temporary situation. L and I have talked about me moving back until I finished the MBA and have more to offer to the still recovery economy here. That brings a whole new set of issues into play. We would have to consider my visa (I’ve done the visa runs to renew my tourist visa and want no more), his K1 visa that we filed here, and my health–although my doctors do think I’m recovering quickly and soon may not need such frequent check-ups.

I swear that these musings aren’t coming from some type of medication haze. I’m off the ones that make me crazy emotional, I think.

I don’t know. Are these just more harebrained ideas coming from someone, who in all likelihood, is far too impatient?

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Could the Holidays Be Even Better? Not When They Are Like Mine…

Posted on November 26, 2010 | 6 Comments

My Thanksgiving was “interesting”. I say interesting like a true Minnesotan would when you hand them an extremely spicy curry dish and then ask them later how it was. They say “interesting” in parentheses because it’s a nice way of saying, “My! That was different! I don’t think I want to try that again.”  My Thanksgiving meal was delicious, the conversation was good, and I had like a half-plate sized portion of pumpkin pie, but the day got off to a bad start.

Okay, so you need a little history. I’m trying to fly out to Baltimore for about a week to be with a friend who has to be there for training. Fortunately, I had some airlines vouchers (it pays to complain to airlines or be friends with people who do) and decided to use them to fly to visit her.  Cool, right? Yeh, not so much. That was eleven days ago. ELEVEN! And my vouchers are somewhere lost in the mail or on a desk. Whatever the case is, they are lost and United can’t issue the ticket until they arrive. GAH! So, I started off Wednesday morning with a call to United where I spoke to someone probably in a different country who assured me that the vouchers would arrive Thursday. Mmmkay… Now, I try to be patient with call center workers because I was one—I worked in a collection agency doing the calls in Spanish no less—and I feel that because of that I can spend the few extra  seconds it takes and BE PATIENT. But, when the guy assured me that the mail service would be running on Thursday, a holiday, I lost it. I’m not proud of it, but it happened. That got me through to a supervisor who had some more encouraging words. Now, I just get to wait a while longer. Super. Keep your fingers crossed that they show up because if they don’t, I lose the seat :(  Mailing vouchers has to be one of the stupidest methods of delivery, well, that along with strapping them onto a courier pigeon. Although, the pigeon might be smarter than the postal service and the staff at United. GAH!

After that, I was stressed out. Can you tell? Suddenly, the room burst into light. It was like a thousand cameras were flashing at once. Some people call it an “aura”, or a “visual migraine”, but in my case it’s a partial seizure located in my occipital lobe where the tumor was. I also had a strange sensation of warmth on one side of my body and nausea. And here you thought my Holidays would be dull?

In the last few months, I haven’t had any partial seizures. I’ve had some jerking arms or legs and I am going to see my neurologist about that, but this was different. I panicked and texted a friend while simultaneously calling my mom. Both of them had the same conclusion: I should go the ER. Except you probably should drive when you think you’ve just had a seizure, so my grandparents—who hate driving in the snow, I might add—drove 40 minutes in a near blizzard to pick me up and then left as not to get caught in it.

So, cue me, in the ER, one among the probably twenty odd patients who had more serious problems than I did. It took them two hours to find  a room and one more for the doctor to arrive. When she did, she was in a hurry because I think the woman down the hall was having a baby. I can’t be sure but there was a lot of screaming and rhythmic breathing.  And if that’s what having a baby is like, count me out. I just want to go back to believing what my mom told me about the stork bringing them.

Anyway, my coversation with the doctor went like this:

Doctor: So, you didn’t have a seizure?

Me: Well, not a grand mal seizure but it was a partial seizure and I haven’t had one in months and that concerns me because-

Doctor: Yeh, whatever…

Her words trailed off as she left the room. She left! Oh, and she rolled her eyes at me before she left! I realize that I may not be the worst patient, but I definitely had cause to be concerned and deserved to be taken seriously.

I waited another five hours in get an MRI. The good news was that I have NO TUMOR RECURRENCE! That’s good, right? That might have been worth waiting hours and getting told I was making it up.

In the end, the seizure cannot be explained, but I have some appointments coming up for that.  The ER doctor actually suggested that I go see an ophthalmologist. Yeh, I have a focal seizure and suddenly I need glasses.  I think I laughed out loud when she suggested that.  Eight hours of waiting for that moronic diagnosis would make even a saint delirious.

When I told L that later, he said I shouldn’t argue with my doctors (he bases this on the fact that he saw my neurosurgeon scold me for googling my condition). I told him that when you are me you get used to telling your doctors how they should do their job because nobody knows even knows how to pronounce what you have–let alone what it is.

Thanksgiving was nice, as I said. Lunch was great. It was after lunch that my phone decided to leap to its death. I was in the bathroom with my phone in a pocket and it saw the prime opportunity and decided to go for it. I’m sure he was thinking he couldn’t possibly stand hearing me complain about jobs ,or seizures, or airline vouchers one second longer. He plunged to the bottom of the toilet and I grabbed him out (gross…I KNOW!) and tried to resuscitate him in the form of a hairdryer. It was a suggestion that I saw some techie’s blog and a low point because I was really try to focus the “hot, compressed air into the holes”. Uhm… there’s just not much you can reply to that.

I can now turn on the phone but it freezes on the first screen it comes to.

It was pathetic how at moment I realized I no longer had a working phone, I started bawling. I’ve been under all kinds of stress lately and I think I’m putting up with it as best I can (my phone obviously disagreed), but the phone finally broke me. I thought of all the resumes I’ve sent out recently with that number on it and the Skype app I was going to use to call L and I just cried. I had my poor family huddled around me trying to understand the random syllables bubbling out of me. It was like playing mad libs with a true crazy person.

Then, I got over it. I pulled myself together because there nothing was open on Thanksgiving night and that meant there was nothing I could do. That’s why I was the first in line today at AT&T and am now the proud owner of a new-er  iPhone. Consumerism is what we all aspire to on Black Friday, right? Just doing my part to jump start the economy…well, my phone and I are.

I promise that this one will be my baby and I will never go into the bathroom with it, or let it within leaping distance of a lake, pond, or even a drinking fountain;)

I’m feeling much better now. You know that crazy, stressed out feeling like you are just about ready to boil over? I was about there. Now, I just let some pressure off.

How was your Thanksgiving? No phones jumping to their demise, I hope?

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What a Difference a Day Makes

Posted on August 17, 2010 | 12 Comments

I’m going to be honest now. I was depressed yesterday. I don’t do well with inactivity. Alone time is good and all but I’m not someone who can do nothing for a huge stretch of time. I think that coupled with actually being restricted from most of my daily activities provided the perfect setting for the depression to set in. And set in it did. I was moody, weepy, and irritable. On top of that, I have a new headache. It’s not the horrible, debilitating migraine type headache that landed me in the ER several times. This time it’s an annoying, dull, tumor/knot shaped pain on the right side of my head.

So I called my doctor. I figured weepy and in pain is probably not good. Fortunately, I had forgotten that I had an appointment set up with him today. They had told me they were going to cancel it because I was doing so well, but they never did (Thank God for disorganized hospital schedulers!) so I was able to get in to see him today.

He started out by asking me how I was feeling and telling me he was a bit concerned that my other doctor (the oncologist) had put me back on the steroids because there can be serious side effects with being on steroids too long and I’ve been on them long enough now. Then, when that made me tear up, he turned to my mom who usually accompanies me on doctor’s appointments now to help me absorb the massive quantities of information, and asked, “Has she been more…er…emotionally fragile lately?”

Without evening pausing, my mom answered, “Yes!”

I would have been angry that he asked her and not me, but I like the words “emotionally fragile” better than I like depressed or despondent or some reason. It sounds more poetic and less like something that I can control or snap out of. Then before you know it, I’m the emotionally fragile heroine of my own story! I bet Emotionally Fragile Brain Tumor Girl wears a rocking cape as she goes around dispelling evil-doers. Hey… it could happen. I bet that moniker isn’t taken!

Then, he asked me why I’ve been more “emotionally fragile” and I responded that it’s because I can’t do anything. I don’t do anything all day. I’m sort of shriveling up  from lack of use.

What he said next really shocked me, “Well, I think you seem better, so why can’t you do anything?”

“Uhm…dude…you were the one who said I couldn’t.”

“Now I think you can.”

Oh.My.God. “So does that mean like work, travel, drive, exercise…really ANYTHING?” I asked the last part quickly so he couldn’t change his mind.

“Sure. Jog if you want. Travel if you want. If you drive you will have to overcompensate, but you probably could. Just start slow, you know, roads that aren’t too busy.”

Wow.

Seriously. What a difference a day makes. Yesterday, I was feeling really bad for myself because I felt like I couldn’t do anything and now I find out that I probably can and maybe could have for the past couple of weeks. I still don’t know about that driving part because I  nearly clobber the nurse today. It was her fault really because she stopped in my blind spot, but would you want to be on the road next to me? I mean, really? Yeh, I didn’t think so.

I talked to L. on Skype shortly after my appointment and he hesitantly asked me when I was planning to travel to Chile (we both really want to see each other). “When do you want me to go there?” I asked.

“Oh I guess anytime you want, September, October, December. September and December are really the best because there is more vacation time, but really anytime…”

I don’t want to get ahead of myself, but I really would love to be able to travel in September because afterward I could concentrate on finding a job and getting our life in order for when we finally get the visa for L. I have a couple more doctor’s appointments coming up–some important ones for my headaches–and then I think I’ll figure out my travel plans.

I’m so glad I had that doctor’s appointment today. I honestly don’t think I could have gone on feeling so weepy and “emotionally fragile” for much longer. It was sort of cramping my style if you know what I mean.

It’s weird how the power of suggestion can change, but now that the doctor told me I could do almost anything… I really feel like I could. In fact, maybe I’ll go jogging this afternoon. Or maybe not. But the point is that I could.

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EEG Glue and Other Fun Times

Posted on July 28, 2010 | 9 Comments

I’ve had an awful headache since last Wednesday. That’s what the two emergency room visits were for. Well that and the uncontrollable vomiting. Sorry…TMI. I know. I’ll be more carefull.

I met with my surgeon and he looked at the CT images that the emergency room doctors ordered and said they were wrong. He said there was no indication of bleeding or scar tissue just healing brain tissue. However, to put me at ease he ordered an MRI and an EEG which I went around called an EKG for the better part of a day because I had no idea they were different. Now I have no idea what an EKG is. Something important…maybe…

The MRI went fine. It was the same MRI tech from my pre-op MRI and she recognized me even though I couldn’t see her very well and it wasn’t until she told me we had met that I remembered. In the end, she said she was no expert but she thought things looked well.

Actually, the whole reason for the tests was because my doctor thinks I’m having little seizures. It would make sense: the visions of (now they are golden retrievers), the weakness, the inability to speak a complete sentence during an “episode”, the horrible headaches which actually might be more like a seizure hangover. And here we thought normal hangovers had all the fun…

When I arrived to my EEG appointment, I was expecting to be there for only 20-60 minutes which is about the standard EEG test length according to my research. Then there was some furious whispering and I caught the words “twenty-four hour ambulatory EEG”. What does that mean? Well…I will explain. It means that those funny, looking little electrodes that they stick *painfully* on your skull and in your hair with smelly glue stay on you for an entire day not just the time that you are in the office, sitting in the uncomfortable chair reading the brochures aptly titled “What is Epilepsy?” and “How soon can you drive after your last seizure? By state”. Don’t worry, I did brush up on my seizure trivia knowledge and can now tell you that the best know seizure where the person drops to the ground and shakes uncontrollably is only one type of seizure. There are like ten or something. Maybe more.

When I left the EEG tech told me that I would look like I had a head wound for a day because she had to wrap the electrodes to protect them. The gauze was tighter than right after my surgery.  The best part was the the wires connected to a hideous fashionable little purse where the “brain” was that documented everything.

Shortly after, I ran into my surgeon who asked me if I wanted a picture with the wires and the gauze.

“Of course!”
“You’re serious?”
“Why wouldn’t I be? Someone needs to document this.”

Sorry for the picture quality. I only had my iPhone to take it with. Can you see all my wires sticking out back? The lovely graze wrap job she did came off later when I went back the the ER for the same headache. I convinced myself that the gauze was cutting off the circulation to my brain and I ripped it off like it was on fire. No one said anything. They must be used to crazy people coming in and doing even weirder things.
 L. isn’t here to help me take kick ass photos, but I tried to snap this of myself as the dog came over to kiss me. He normally doesn’t kiss me or sit by me. See, my family doesn’t like to discipline him too much. I do. Therefore he trembles in my presence, but he behaves. Yesterday he smelled my EEG machine and the gauze and actually sat on me. The cat did the same thing later. It was strange. I think animals know.

Now, I have it off for real. Although I still have chunks of smelly, hard EEG glue stuck in my hair. They recommended nail polish remover and hot oil treatments so I did that. Looks like I might need more tomorrow because I still look like I have the world’s largest dandruff chunks stuck to my scalp.

I’ll end on a happy note. Thank you to Jess from What’s the Story Morning Glory! She sent me a scarf that she made herself. That’s pretty awesome considering that we are just “blog” friends. Also, I would like to thank Heather from China to Chile! Right before my surgery, she sent me a journal and I was so preoccupied I forgot to thank her. She’s moving to Chile soon, so check out her blog.

All my blog friends have been really amazing lately. I’ve received cards and little presents from blog friends all around the world. I think that makes them “real” friends now, don’t you? Note to self: Tell L. to stop teasing me about my internet friends.

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How Some Great Post-Op News Made my Day

Posted on July 20, 2010 | 13 Comments

Yesterday was a great day. It didn’t start out that way. Actually it started out with me *crabby* because the worst headache I’d experienced since I’d been in ICU kept me awake and nothing (neither ice nor Tylenol) did anything to alleviate it. I was so concerned that I called two on call doctors at the hospital and was told the same thing twice “Er… post brain WHAT pain? Er… I don’t know. You should either go to the emergency room or wait for your doctor. Yeh…” Finally, at the edge of a panic attack because I was imagining the worst, my surgeon’s nurse called me back. She assured me it was normal and reminded me that I had a follow-up appointment with my doctor in the afternoon during which he could prescribe something strong for the pain. Except due to the mastocytosis, my body can’t tolerate any narcotics. Like none. (Let’s hope I never need back surgery some day!). Then, like it knew it had caused me enough grief, the headache went away. Just suddenly and without any more drama.

Probably because of the fact that I woke up in pain and didn’t sleep, I was listless and cranky most of the day. It started out as the day where I felt the most like I had just had a huge operation. At one point, L. looked over at me and tried to order me to go take a nap (men are cute like that) to which I was all “I don’t want to!” and sat stubbornly in the kitchen doing nothing.

We went to the grocery store in the morning to make a Chilean soup that I love. (Okay, so I’m starting to miss Chilean food. You knew it would happen eventually, right?). It’s a soup with beans, squash, noodles, carrots, a little spinach, onions, and some aji de color (which proved to me trickier than we thought). Sometimes you can even add sausage to it. L. told me that was a personal taste thing, and I told him to do it. Yummmm…

At the store we once again carefully translated our list of ingredients and thought we had everything although the bay leaves that we swore we purchased never made it to the kitchen counter and we translated aji de color as red pepper. A better substitute would probably have been paprika because aji de color in Chile has very little of its own flavor. Like very little. Imagine me cooking (difficult to see, huh?) and I keep putting this flavorless, albeit colorful powder in my food because the flavor never seems to change. I know you are all mmmkay Sara so what happened? Well… I forgot to mention this little detail to L. and because I was still crabby and staring at the kitchen table he put an entire handful of red pepper in the soup. It turned out delicious, don’t get me wrong. It was just much, much, much spicier than any porotos con rienda (with or without s? L. and I couldn’t agree and neither can google!) that I’ve eaten in Chile and probably would scare off the majority of the population of the country. Fortunately for us we loved it and were too hungry to care that you had to eat it between big gulps of water.

See? Right color and all, just probably about a 6 out of 5 on the Chilean spice scale.

Also, yesterday I had my post-op doctor’s appointment with the neurosurgeon who performed my surgery. It isn’t often in the world of medicine and doctors and hospitals that you can say that you have a very good doctor who not only knows their sh*t but is a decent human being too. I wonder if it’s something about going to med school for so many years or the large paychecks that make some of them seem so cold and arrogant. Anyway, my doctor has a great personality and he’s a miracle worker as far as I’m concerned.

He told me that I’m doing amazing. I’m much stronger and my recovery seems to be healing faster than other patients he’s had with similar situations. However, he did warn me that on the scale of complicated operations mine was a 9 out of a 10 and that I should expect to feel tired and I should expect to rest for a month, or maybe even two or three.

He even joked around with me. It was almost like he had read an entry in my blog but he seemed to know exactly how much research I had done on my own about my case, him, the hospital and all my medications. He was like, “Sara, a piece of friendly advice: Stop reading so much and trust people more. I’m on top of this so you don’t have to worry.”

Oh…Okay…

Then, the nurse came in and removed the staples from my head which hurt a lot less than I thought it would. At first she said it would be like a wasp sting so I held on to L. forearm and squeezed tightly anticipating the pain and never even felt it.

I found out I do have titanium plates and screws in my head now but I can still go through the metal detector unlike a granny who just had a hip replacement. The doctor was all, “I did not turn you into an old lady! You will go back to being a fully functional twenty something in a few months.”  Good deal. He added that I should even travel for at least three months and strongly advised me not to live abroad for the next couple of years because they will need to monitor me closely.

He did also add that he doesn’t want me to do much of anything for the next three months at which point I will have an MRI and they can determine how my brain is healing. That includes working and exercise. Honestly, I was bummed, but I’m trying to take it like a forced vacation. He did say that he thinks I should be healthy enough to resume my MBA classes in September which is great news because I would also like to take a medical Spanish interpretation course at the U of M. However, he basically said not to be afraid to rest and take it easy and not to get frustrated with only small progress on some days. It’s like when I was in the hospital and they wrote my daily goals up on the white board that hung across from the bed where I was chained to a million machines. The sign read “1. Sit up in chair. 2. Eat. 3. BM” The final one took me a while. I was all BM? BM? What the eff is a B….oh! Awkward. You mean all my visitors know that? Great.

Wow…I’ve written a novel here. I should probably get going because L. and I are off to the airport to pick up my globe-trotting brother and his girlfriend.

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Why I suck at “taking it easy” and photos of stuff

Posted on July 18, 2010 | 11 Comments

I’m a fast paced, impulsive person. To those of you who know me well this is no surprise and I’m sure it even comes off in this blog (hello attacking my paparazzi in Tottus), so let’s just say that recovery and all this “taking it easy” is harder than it looks. I’m not really the kind of person who can veg out easily. I like to be up and active. A normal day for me consists of very little down time mostly because I don’t know what to do with myself.

I’m wondering if half of my superhuman energy has to do with the fact that I’m still on some very potent steroids to take down the swelling in my brain. That’s the reason I’m able to exist on sleep that wouldn’t suffice for even a gerbil, and I’m breaking out and eating like a 16 year old. Oh, also I tend to be a liiiitle more angry emotional. Fortunately, I’m on a sliding scale and I’m definitely running down the steroid hill at this point soon to be off of them. The only part that concerns me about that is that my unusual energy (my doctor thinks I’m some sort of brain surgery miracle) is that I might actually be tired. Then, I might have to calm down this pace and actually rest.

Right, so I’m not out running marathons or anything. I still get a little tired walking up the stairs and around the corner, but I’m doing things that other neurosurgery patients might not be doing mere days after being discharged like: shopping at the mall, going out to restaurants, getting lost in public bathrooms, taking *large print* books out at the library, and going to the University of Minnesota Arboretum (so I sat on a bench in the shade a lot….I had a good excuse!).

It’s hard because I have so many plans now. Like. So. Many. Plans. My entire perspective on life seems to have shifted. Nothing seems impossible anymore. Nothing. All those little things that used to hold me back? Gone. Things seems clearer. Relationships are more important and my goals have an entirely new meaning. Sorry. I’m not trying to get all Hallmark card on you, but it’s true. It’s one of those things I think about when I’m busy not sleeping at night.

I’m excited because on Monday I have a doctor’s appointment with my neurosurgeon to remove my “sutures”. Bear in mind that I have hardly even looked at the back of my head. I did take a good look once and saw that I have quite the gash (a good six inches down my skull) full o’ staples and other “hardware” and it honestly made me feel a little weak. That’s why L. and my family are such saints because they have to rub me down with antibiotic ointment (I love using the word ointment….ointment…ointment…ointment!) once a day. Bleh….

I heard a rumor that I have a plate of some sort in my head now. I wonder if that means I get one of those medical cards to bypass the metal detectors at airports. *fist pump* You know the ones they give to the little old grannies who have more metal in their hips than box-spring mattress? Yes, well they are not just for old ladies anymore…

My friend M. told me the other day that I surprise people because I look so freaking healthy, but I’m pretty blind still and well, get confused in bathrooms for crying out loud. I’m sure that’s what the woman who I barreled into today thought. Or the people at Caribou Coffee who were eyeing the IV bruises on my arm like I was some sort of addict. Or the guy today who made eyes at me in Target, but I had no idea I was even looking at him until he was right in front of me. Seriously. I have no idea how long I sat there stupidly gaping at him because I couldn’t even see him.

And now before I bore you with more possibly steroid induced ramblingd, some photos from the Arboretum today. I managed to get a little sunburned (another possible thing to check off of my post-surgery to-do list).

Okay… and I won’t even take credit for the photos. Add that to the long list of reasons why I will miss L. when he leaves: he takes great pictures.
I got so many flowers while I was in the hospital but most of them did not end up coming home with me because my cat has a plant addiction problem. Yeh, he eats them and then vomits in a corner. It’s one of his more attractive qualities. So, being around color was amazing. Oh and I can see the flowers. I Love hibiscus. I have no idea why. Like I said, I did a lot of sitting on benches in the shade, but L. managed to snap this of me in motion. I have to keep something on my head at all times just as much for my scar’s sake as for not scaring the rest of the public. That hat was sooo hot, but I am wearing the earrings that I told Deidre from Decoy Betty about when she sent me a darling red scarf all the way from AUSTRALIA! I love the blue of this one. It looks perfect against the reddish pink (that is reddish pink, right?) of these. Oh and I don’t even remember what these are called (brain tumor moment? You decide).We saw a timid little cardinal. L. followed him for a few feet because we told him that cardinals are usually very shy and this one seemed to want his picture taken. There was a pond with tadpoles and baby frogs. What is cuter than a baby frog? All green, and tiny, and slimly. (Yes, I was one of those children). In the same fountain a group of tadpoles had started masticating the body of their tiny tadpole brother. No picture for that. Apparently that’s how frog families work. Fun. I love this last one with the bee. I’m terribly allergic to bees so I was nowhere near this flower, but what else can say summer besides an image like that? There I hope you have enjoyed my rantings and Arboretum slide show. I think it’s probably a good idea if I retire now to stare at the ceiling try to sleep. Good night! Or Good Morning if you happen to be waking up in Australia…

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Recovering At Last!

Posted on July 11, 2010 | 22 Comments

I don’t want to bore you with any words about how that was a lot easier and harder than I was thinking, but it was both. I honestly expect that to be the worst I will feel in  LONG time. However, at the same time, for someone who just went through brain surgery, I feel like I could handle anything.

The drama started Tuesday morning when they tried to take CT images to map out my brain and  either had a reaction to the dyes or the pre-op antibiotics and my entire body went red and they had to give me oxygen. That was probably the closest I’ve ever been to an anaphalactic reaction from the mastocyctosis (which they knew would cause problems and they were prepared).

For the surgery, they let L. suit up in scrubs and a full body cover to wheel me into the OR. He looked quite cute, if you ask me. I wish we would have taken a picture, but I’m sure I was beyond most rational thought at that point.

I remember a little after the surgery. I remember coming to surrounded by my family. I couldn’t say much and my vision was (and still is blurry). I remember the feeling of complete helplessness and everything made me feel like throwing up which was the worst feeling in the world. I think at one point, they might have overmedicated me a little and L. worried that I wasn’t breathing normally, but that passed.

Each day since the operation I’ve been concentrating on baby steps. I’m not going to magically recover overnight. I actually think the recovery might be longer and more involved than I thought. They told me in therapy today that I’m doing well (my surgeon says I’m doing outstanding compared to his other patients), but I’m still slower than someone should be for say driving a car and all that. They think I should have some out-patient physical and occupational therapy. Writing this post is definitely slow progress, but it must be good for me so I’m going to tell them at therapy. Remind me, okay? (That was a joke).

My scar is bigger than I thought. My mom tells me that it isn’t that bad and that my hair is already growing around it. I can’t get the staples out for another week, but at least I have the huge head bandage off. I think that hats and scarves will be making an appearance in wardrobe. Also earrings. I was watching some videos for women cancer survivors and one of them mentioned big, dangling earrings because they are fun and give a nice, flowing look. Besides that I have a nice little collection of scarves and hats. Thanks to everyone who has sent me one! It is much appreciated!

I’ve lost a lot of weight. It said in all the information I received that I could expect to lose a lot of weight due to loss of muscle tone and simple not eating due to medications or recovery, but I think I’m looking positively pre-pubescent. Fortunately, my family got me all sorts of yummy and easy to eat foods to entice my appetite back.

I hope this post hasn’t been to choppy or difficult to understand. Each one should get a little easier. I hope you all are doing well!

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Ready!

Posted on July 6, 2010 | 18 Comments

Two weeks ago, this wait seemed endless. It was like the date would never arrive. Of course, at the time, I didn’t want it to.

Now, I can finally say that I’m ready.

I’m still scared. I’m still a little nervous. That’s probably why it’s almost 1:00 AM and I’m not sleepy at all.

I had a really great weekend with my family, some friends, L., and today my grandpa arrived from Wisconsin to be here for my surgery. Today (or yesterday? this not sleeping is weird), we had a tiny barbeque and made some Chilean things like pebre which my family loved.

Since it’s after midnight the day before my surgery, I can’t eat or drink anything. I can only take a sip of water (if absolutely necessary) to swallow a pill.

They gave me some huge anti-microbial wipes to use to clean my whole body, and honestly, the only thing that is even “bothering” me right now is the fact that my skin is itching like HELL from those darn things. I mean, seriously, they should come with a warning. (Oh wait, they probably did. I never have been much for reading directions…)

I have to check in to the hospital at 5:00AM. They are going to map out my brain with an MRI at 6:00 and a CT scan at 6:40. After that, I get pumped full of intravenous antihistamines because patients with mastocytosis tend to react badly to general anesthesia and they aren’t going to take any risks with me.

Then, granted all goes as planned, I will be wheeled in to the OR to started surgery at 8:00 AM.

When I first talked to the doctor, he said the operation could take 8-10 hours. We then learned that he has a case scheduled later in the day, so I hope that means he has decided my surgery is less complicated than he originally stated.

After surgery, I will spend about two days in the ICU and then two days in a normal room during which time they will be testing my cognitive abilities and monitoring me for problems that could result because of the surgery.

I will try to update (or at least have someone update) soon, but I don’t know when.

I just want to say, I’m ready. I even spent about 20 minutes learning how to tie various headscarves because I still don’t know the extent of the damage to my hair. I think I have some cute/creative options to keep me satisfied for a while.

Please pray for me/send me good vibes/think of me:)

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