Foggy with a chance of freak out

I last left off in the very early stages of getting involved with the chemotherapy drug, Lapatinib, as a means of stabilizing and/or potentially shrinking the tumor. I started taking the lapatinib shortly after the note and began a six-month journey that I don’t think anyone was prepared for.

The first few weeks on the drug went very smoothly. I was expecting some diarrhea and some mild skin rashes, which is what is listed as common side effects by the manufacturer. Fortunately, I didn’t experience either of these things and figured that this was going to be a piece of cake.

My hearing was still pretty good at this point thanks to the heavy doses of prednisone (steroids) that I was taking. But combined with the lapatinib, I was left with a serious lack of motivation and creativity for a majority of the day. I would get bursts of ‘feeling better’ from around 3 pm to 7 pm, which was nice, but I would have to take the second dose of steroids around 8 pm, which would start the negative cycle all over again. I would fall asleep each night with Lucas around 8:30, sleep for a few hours, wake up, eat something and go back to bed.

Feel the Funk

In early July, while celebrating my father’s birthday, I started to experience minor episodes of trouble taking deep breaths. It wasn’t much of a big deal, they would last maybe ten minutes or so, and then things would return to normal. I had also developed a pretty nasty cough that was strong enough to send a pain into my back. Something wasn’t right.

I casually mentioned this to my oncologist on my next visit and the next thing I knew, I was standing in front of an X-Ray machine getting my chest radiated. He took a look at the films via the NYU intranet, e-mailed me and told me he didn’t notice anything unusual.

The following day I received an e-mail from him noting the radiologist had spotted an ‘abnormality’ on my X-Ray films and that I should see a pulmonologist asap. He also ordered a CT scan of my chest.

I didn’t even know what a pulmonologist was, but luckily his office took care of business and set me up with an appointment.

I met with the pulmonologist about a week later and he reviewed the CT films, pointing out the mysterious black spot on my lung. There was mention of possible tuberculosis and other nasty things, but the idea of this being anything malignant was ruled out early.

Because they couldn’t identify it from the films, he ordered a biopsy. The word biopsy instantly freaked me out, but I was (sort of) assured that this was nothing malignant and the biopsy will reveal exactly what it is.

I’ll spare you the details of the biopsy but know that it involved a 12” needle, multiple injections and a lot of me gritting my teeth on the bed of a CT scan machine for an hour.

Fungal in the Jungle

A few days later I met with my oncologist, who informed me that the results of the biopsy showed that I had a ‘fungal infection’ in the top portion of my right lung. He was as surprised as I was, being that fungal infections are quite rare.

Ideas were discussed of where the infection may have come from, which ranged from something I picked up five years ago on our honeymoon in Mexico to moldy grass clippings in our backyard. It was a bit of a mystery.

I later found out that because my immune system was so compromised due to the drugs, this fungus that everyone has in their body was able to cultivate inside of my lung due to the lack of defense..

Back to the pulmonologist, who went over a few options and decided that a course of antibiotics would be the best way to get rid of this thing. I got my hands on the 30-day supply of antibiotics called VFEND, I was ready to start fighting the funk.

A few weeks prior to the fungal fiasco, my hearing had started to become distorted again. I was starting to have trouble understanding what people were saying to me, similar to the way it sounded when it initially dropped in May.

I noted this to my team of doctors and was told to increase the steroids to a level that would give me ‘adequate hearing.’ So, I did. I bumped up the daily dose to 50 mg, which is about ten times the typical dose.

It was late July at this point and we packed up the wagon and headed North up to the Finger Lakes in Upstate New York for some much needed R n’ R. We were able to relax a bit along with some of Jennifer’s relatives at a house that bordered Lake Seneca. We ate tons of good food and spent the days swimming in the crystal clear lake.

I started taking the VFEND the day we left and felt the side effects immediately. About an hour after taking the pill in the morning, my vision would get distorted and I would notice slight changes in color perception. It was also making me extra dizzy. According to the manufacturer, this was a common side effect and it should be resolved after I stopped taking the drug.

We returned home from the Finger Lakes a day early so I could have my two-week lab work done for the VFEND. There was a risk of liver damage, so my doctor wanted to make sure that we kept a close eye on things.

Shortly after having the lab work done, I was sitting in the Apple store enjoying the A/C when I received the following e-mail from my oncologist:

your liver enzymes are a touch out of the ordinary… so nothing to do with that..
but your glucose is completely abnormal.
you officially have diabetes and should see an endocrinologist!

Say what — diabetes?! I really didn’t know how to react to this news. This wasn’t the news that I was expecting to receive. I basically lost it, walked in the bathroom, sat down in a stall and started crying.

I frantically texted Jennifer, who in her usual manner, told me that it was going to be OK and we’ll deal with it. I believed her, cleaned myself up and headed back out into the inferno they call Manhattan in August.

I later found out that my blood glucose level was 350 — the normal range is 75–100. In retrospect, I probably shouldn’t have spent the entire week at the lake house stuffing my face with hot dogs, ambrosia salad and cans of Coke.

So, at this point, I’m gradually losing my hearing, I’m wacked out on three heavy duty types of medication, I have a lung infection and now I have diabetes! Things were not going too well.

No more hot fudge sundaes

I met with an endocrinologist, who set me up with an insulin injection plan and I stripped my food intake down to a sugar free, low carb, high protein diet.

After reviewing my blood sugar levels that I’d recorded for a few weeks, she downgraded the original “diabetes” diagnosis to “steroid-induced hyperglycemia.” This was positive news. She explained that the steroids were causing my blood sugar to sky-rocket, so once I eventually stopped taking the steroids, my blood sugar should return to normal.

All in all, this actually wasn’t the worst thing to have happen. The balanced meals and increased vegetable intake was making me feel better; giving me the extra energy that I needed to compensate for all the synthetics and chemicals that were running through my body on a daily basis.

I was due for the change. I was still out of work on disability due to the constant doctors’ appointments, so I had the time to shop for the food and prepare meals. Between the new diet, a good daily walk and the insulin, I was able to get my sugar levels down to a reasonable level. Phew.

Accepting the situation

Around Mid-August, my hearing had become very poor. Surrounding sounds like traffic in the distance, birds chirping and the wind blowing all started to fade. I could make out familiar voices, but was having a very difficult time out in public when dealing with strangers.

I didn’t know how to handle the situation. I would order a cup of coffee and the barista would ask me a question. Hoping the answer was something simple like ‘yes’ or ‘no’ I’d respond with that. In most cases, the answer wasn’t ‘yes’ or ‘no’ and the barista would then stare at me like I was an idiot. It became an awkward dialogue that needed a much better solution.

I mentioned the difficulty to Jennifer who suggested that I need accept the fact that I was deaf and would now need to act accordingly. I agreed.

I started telling people upfront that I was able to talk, but unable to hear them respond. I also started carry a pen and pad with me wherever I went. This was a much better solution that took some of the anxiety out of my everyday life.

You are in the shit. I can’t imagine it. And yet you have a lightness about it all. I know it’s difficult for you to see it sometimes, but it’s there. And that’s the fucking magic during the struggle: Acceptance and dealing with your cards.

Your attitude is heroic. Seriously. To choose to share this at ALL takes massive balls. And to be completely and 100% honest while wading through the scary waters? My friend, that is the face of bravery.

Rustyboy via Flickr

I had become a bit of a hermit and needed to get out and start to adjust to different environments beyond a doctors’ office or the local coffee shop with my hearing loss.

My buddy Dave was getting married in the fall and his brother was throwing a bachelor party for him.

I decided this would be a good opportunity to venture out into the social scene as a deaf person. I could still hear some sound and make out some conversation with a lot of focus on the person speaking. My friends knew the situation and those who didn’t figured it out pretty quickly. We ended up drinking pitchers of cheap beer and eating miniature hamburgers while they kept me in most of the conversation by texting me from their iPhones.

It was a pretty great night because it showed me that I was still going to be able to do this even though I could no longer hear.

Hearing with your hands

I began taking sign language classes in Manhattan in September. My sister, Suzanne had taken classes at the school and recommended it.

The first two classes were great, I felt really comfortable being in a situation where I didn’t have to listen as a means of communicating.

By the third class, things started to get difficult. The instructor started to move along at a much quicker pace and I was having trouble keeping up. It was a harsh reminder of how quickly I failed my third year of Spanish in high school. But unlike Spanish, I really needed to learn sign language as a way to communicate.

I was getting stressed out about going to the class and just decided to coast through the remaining sessions without putting too much effort into it. I simply had too much going on and was taking way too much medication to be able to concentrate on all of this.

This is not to say that I didn’t learn anything. I learned a lot, just not as much as I would have liked to. It gave me a good base for the language that has enabled me to understand it more at home with Jennifer. She’s been teaching herself through books and DVD’s. We have recently been trying to get away from the pen and paper and use sign as a method of communicating. It’s not easy but we’ve been making pretty good progress. We’ve also been teaching Lucas, who is doing really well. Andrew just turned one a few months ago, so sign language will be second nature as a way to communicate with me in the future.

Long Live the Funk

I hated being on the VFEND, so I was pleased to finish up the 30-day course and head back for another chest CT to find out if it had done its job and killed the infection.

The CT results came back and showed that the VFEND did eliminate a majority of the infection, but not all of it. I would need to go back on the antibiotics for another 30 days.

I was pissed, but I figured another 30 days was better than having to have it surgically removed, which was the other option.

Oh cool, some good news

I went in for an MRI of my brain in Mid-September to check on the effects of the lapatinib. The results came back showing that there was no change in the tumor from the previous MRI.

I was disappointed at first because I was hoping the drug would have shrunk the tumor, but after giving it some thought I realized it was a very good thing, especially since the tumor had been on a growth spurt for the last two and half years.

This meant that either the tumor had taken a natural break from growing this round, or the lapatinib was actually working. With these results, it was decided that I would stay on the drug and see what happens in the next couple of months.

Back to the grind

I hadn’t planned on being out of work for five months, but somehow that’s what happened. I had so many doctor appointments and tests every week, it had become a full time job, just one without a paycheck.

Things started to calm down though, the second round of VFEND wasn’t as bad as the first and the appointments were thinning out. Walking around the mall and browsing books at Barnes and Noble starts to lose its charm around month four. It was time to get back to work. I chose a date, contacted my bosses and prepared mentally to return to the job.

I had lost about 95% of my hearing by now, so things were going to be a lot different for my co-workers and I.

My boss and I passed a few e-mails back and forth trying to figure out the best approach for me to work. There wasn’t much of a plan beyond e-mail, instant messenger, my laptop and pen and paper. We were all going have to work through this together and figure out what works and what didn’t.

Surprisingly, the transition back to work wasn’t as difficult as I thought it might be.

Fortunately, I get to sit in front of a computer and design stuff for most of the day. Using my eyes, not my ears. But of course it’s not all fun-time with Photoshop, I do have to attend the occasional meeting. Double fortunately, I work with a team of very generous and thoughtful people who have adapted to my hearing loss and work with me in different ways so that we can get the job done. Whether it’s typing out comments on a laptop or diagramming things out on the white board, it’s just a different, but effective way of communicating.

Meetings and design reviews are the most challenging to deal with. The easiest solution right now is for someone to volunteer to type out what is happening onto my laptop. We’re currently looking into voice-to-text software that will help eliminate this process.

Similar to the night out for the bachelor party, being able to return to my job and do it successfully was an accomplishment for me. It felt good.

You Can’t Fight the Funk; Nor can you fake it

Two weeks after returning to work, I finished up the second 30-day course of VFEND. I had another CT scan and made an appointment to go over the results. I had a bad feeling about the results of the CT. I had been coughing a lot the week before and was concerned that the infection was still there.

My gut was right. My doctor e-mailed me the results stating that the second round of antibiotics did not have any affect on the infection. Either the infection had become resistant to the antibiotics or this was something other than a fungal infection. He suggested that I meet with a thoracic surgeon to discuss having the infection removed surgically. So, I set up yet another appointment with another doctor.

I met with the surgeon a few weeks later. He discussed the procedure and the recovery time. I was looking at an hour under the knife and three days in the hospital. He came off very confident about his work and basically made it sound like it shouldn’t be that big of a deal. The goal was to be as non-invasive as possible. I believed him and we set a date for the first week of December.

Foggy with a chance of freak out

A few weeks after learning about the need for surgery, I was at work and I noticed that my right eye was kind of blurry. I figured it was just a dirty contact lens and didn’t put too much thought into it. The day after, it was still blurry and I started to get concerned.

In preparation for the lung surgery, I had to stop taking the lapatinib, which I did the week before. After stopping the medication, I started to feel really dizzy, my hands were weak and I was waking up with minor headaches everyday. The blurry eye was on the same side as the tumor and I started to freak out. I made a call to my opthamologist and was told that he couldn’t see me until the following week. No good.

I Googled a few opthamologists in the area and made an appointment with one nearby. I left work, raced down the Parkway, couldn’t find the office and arrived 15 minutes late. I was off to a bad start. The whole situation was weird, she shared an office with a plastic surgeon who had all sorts of dopey posters and brochures about cosmetic surgery around the waiting room. I thought I was in the wrong office.

I explained my history to her and she examined me with some routine stuff. She needed to dilate my eyes, which is normal for an opthamologist to do, but I told her she couldn’t since I drove there and had to go back to work. She became very frustrated with me, which was both unprofessional and not something I needed at the moment. Knowing the situation with the tumor, she advised me to go to the ER, because there could be something ‘seriously wrong.’ Freak out time.

I got back in the car, raced back to work, avoided talking to anyone in the office and quickly e-mailed my boss to let her know that I was leaving to go to the ER.

Jennifer was in California on a business trip and I didn’t really feel like texting her to let her know that I was on my way to the ER. She had enough on her mind at this point.

I e-mailed my doctors and my parents. Both of my doctors agreed with the opthamologist and told me to go to the ER. My father got the e-mail, didn’t even respond before getting in the car and drove up. My adrenalin was flowing at this point. I was a nervous wreck. I hadn’t eaten since breakfast, but wasn’t hungry. I knew I needed to eat since we may be looking at a long night in the ER. I threw together a peanut butter and jelly, packed a bag and waited for my father to show up.

My father showed up and I explained the situation. He remained calm but concerned as usual. I kissed the boys good bye and we headed to the local ER.

The ER arrival went pretty smoothly, checked in, explained the situation to the nurse, had my vitals taken and then we sat and waited.

Into the ER, not my favorite place to be. It always looks like a war zone, people laying on gurneys all over the place with doctors, nurses and orderlies running around all of them. It’s always a little nuts and in most cases, there are people in much worse shape than you. It can be a little frightening.

I met with a nurse and explained my whole history once again. My father complimented me on how well I know my medical history and how eloquently I explain things to people. I sort of laughed it off while realizing that this had become my life and I’d been explaining it so often to people, it had become like a sales pitch. A really complicated and serious sales pitch.

We finally met with the doctor and explained the situation again. I told him that I would like to see an opthamologist and possibly have an MRI done, which is what both of my doctors had requested earlier via e-mail.

The ER doctor came back shortly and told us that they would do a CT scan to look for any pressure within my head that might be causing the blurry eye. I decided to e-mail my doctors to let them know what was going on and hoped that they might make a phone call to speed things up.

My oncologist flipped out asking if they were refusing to give me an MRI and told me that he was calling the ER to find out what was going on. Awesome, but how did he know what number to call when I never told him where I was? I e-mailed him back and explained that I was in Edison, New Jersey, not at NYU, which is where he thought I was. Oops.

After some back and forth, I got him the phone number for the ER and he made some calls. At some point during all of the confusion, I had a CT scan done and was brought back to wait for the results in my curtained cove in the ER.

It was getting pretty late at this point, maybe 11:00. Jennifer had spent the day flying home from California and had no idea that I was in the ER. After a few attempts, my father was able to get in touch with her while she was taking a car service home from JFK.

I was relieved that we’d gotten in-touch with her and was pretty exhausted and were still waiting for the CT results, so I shut my eyes and tried to get some sleep. I woke up at 1:30 when the doctor returned with the results. He was explaining them to my father, who was quickly taking notes on his note pad. Since I can longer hear, I pay closer attention to peoples’ expressions and reactions. My father had a look of concern and borderline panic on his face while the doctor spoke to him. I knew before the doctor was done explaining that things were not good.

My father came over and explained that I had a ‘mass affecting my brain’ and that my doctor at NYU was having me transferred there for further investigation.

“Oh, shit.”

All sorts of thoughts started running through my head. I was pretty sure that I was going to be lying on an operating table having my skull drilled open within the next 12 hours at NYU. I asked my father to call Jennifer and her mother to let them know what was going on. My anxiety was now at Defcon 4 and my entire body was shaking. We requested something to calm me down from the nurse. She returned with a huge syringe of something that she shot into my ass. It worked, I stopped shaking and was able to focus on the situation again.

We didn’t receive much more info except that they wouldn’t be transferring me until the morning, so my father, who was exhausted at this point, decided it was best for him to drive home while I slept through what was left of the night. He’d meet me at NYU in the morning.

I was woken up bright and early at 6 am, signed some release papers and was loaded into the ambulance. The ride was smooth and seemed to go by quickly. I watched the sun rise out of the back windows of the ambulance while heading north up the Turnpike.

Arriving at NYU was pretty uneventful, which was a surprise. I was set up in a room and visited by both my doctors and the on-staff doctors and their cronies. No one was rushing me into an OR or even an MRI. I started to relax a bit more.

I brought the CT scan results on a disk to the NYU team to review. It was our understanding that there was a new ‘mass’ on my left side along with the existing tumor on the right. When the scans were reviewed again at NYU, they found nothing but the existing tumor, which actually had not changed in size from the previous MRI.

Phew, no emergency brain surgery this weekend!

While this was a huge relief, I wondered where this idea of the mass on the left side came from. Then I remembered that the films from these scans are inversed when they are printed…THEY READ THE SCAN BACKWARDS!!!

If they had shown me the scan back in New Jersey, I could’ve told them that and I’d be sitting in my kitchen with a nice cup of coffee, instead of lying in a hospital bed — amateurs!

More doctors came through and checked-in with me, I had another MRI, a chest X-Ray and finally a neuro-opthamologist came in for a consult. He looked me over and dilated my eye to get a better look. I explained to him that the vision wasn’t so blurry as it was foggy in the middle and sort of in-focus around the edges. He didn’t see anything wrong and told me that it was most likely due to the change in medication and it should clear up over time. Double Phew!

All in all, it wasn’t a huge waste of time. I had been feeling strange with the extra dizziness and weakness in my hands, so it was good to make the doctors’ aware of this. There is also something comforting about having an MRI done and told everything is stable.

After fours days in the hospital, Jennifer picked me up and shuttled me home. I couldn’t wait to get home and see the boys. Andrew, who refuses to sit still for more than three seconds, just sat on my lap and gazed at me for about five minutes. It was really nice to be home.

I returned to work (again) a few days later and got back into the groove. The vision in my right eye was still a little funky, but my left eye was crisp, so it compensated well. I figured as long as the left eyes stays clear, I’ll just wait it out and see what happens. It was manageable.

I had the lung surgery scheduled for the Monday after Thanksgiving, which worked out well because it gave me a few days to relax before the surgery and I could also enjoy the holiday.

Uh oh

The Friday before Thanksgiving, I noticed that the vision in left eye was now looking a bit blurry. When I covered my right eye, I was seeing double on small type on the screen and my iPhone. I wasn’t on the computer too much over the weekend, so it wasn’t so noticeable. I returned to work Monday, hoping that it would have cleared up, but it didn’t, it seemed to be getting worse. I adjusted my monitors and increased the type size, which helped a little, but things weren’t looking too good.

I figured I had a bunch of time off coming up, so I would just relax and it would resolve itself before I had to go back to work.

By Wednesday, I was really having trouble reading my iPhone and once again, panic struck. I told Jennifer what was going on and she basically lost it. The last few months had been one thing after another. Nothing seemed to be going in our favor with the exception of the tumor not growing. I was continually getting knocked to the ground and then getting kicked. She simply couldn’t take it anymore. Neither could I, so I completely understood where she was coming from.

With a houseful of people expected for Thanksgiving the next day, we agreed to just focus on the next couple of days and then get through the lung surgery on Monday.

Get the funk out of here

We arrived at NYU at 6 am to prepare for the surgery. We went through the typical check-in process and were taken to a room where I would get into my gown. A handful of different doctors would then brief me on the procedure. The whole process ran smoothly because they provided a translator, who typed out what was being said with an Ubi-Duo. After signing more paperwork than a real-estate deal, I was taken to the OR.

Instead of using the Ubi-Duo, we opted for a simple dry erase board for informing me what was happening. There was a good amount of prep work, so it was really helpful to know what was going on around me. Finally, I lied on my back, took a few deep breaths and it was lights out.

When I woke up I was in a lot of pain and I felt like I couldn’t breath. They had the oxygen mask on face, so I knew I was getting air, but the pain was pretty bad. I started pressing the magic painkiller button and after five minutes or so, the pain started to fade.

I was in ICU for a day, but felt pretty good overall. My breathing was normal and I was told the surgery was a success and they were able to remove all of the infection easily — no need for the rib spreader.

I was moved to a regular room the following day where they removed a tube from my abdomen. Moving around was still pretty tough at this point, but they wanted to get me out of the bed and walk around the floor. When I finally managed to take a walk, the whole right side of my upper body hurt, I felt like I’d been hit by a truck, but I managed to do a few laps and get back into bed.

I was pretty doped up and tired so I did a lot of sleeping throughout the day. Unfortunately, this catches up with you as you lay wide-awake at two in the morning. “Nurse, Xanax! STAT!”

I felt pretty good by the third day, still beat up, but I was able to get up and around. I was checked out by a few docs and they gave me my walking papers around noon. They removed the IV’s, I got dressed and texted my father to have him come pick me up.

We had decided before the surgery that I would spend a couple of days down at my parents house to help recover. Both Jennifer and the boys had come down with nasty chest colds, so it was now an especially good idea.

We made a stop at home so that I could see the boys, but didn’t stick around too long for fear of catching any of their colds.

The next coupled days spent at my parents’ house was comfortable and relaxing. I slept, ate and watched TV — it was like being in high school again. As I was feeling better and better about the lung recovery, I started to worry about the vision again. It was definitely getting worse as the week went by. I asked my mother to call the eye doctors about getting me to see someone the next day, I was really starting to get nervous.

We were able to get an appointment with an optometrist. She gave me thorough examination, dilated my eyes and told me the issues I was having were probably due to the two cataracts that had developed in my eyes. She also told me that my optic nerve ‘looked different and may be swollen.’ She suggested that I make an appointment with their ophthalmologist/retina specialist.

We were able to get an appointment for the following Monday. I was pretty stressed-out about the possible swollen optic nerve. I don’t know much about how the works, but I do know that if you lose the optic nerve, you’re dealing with complete blindness in that eye. Not good.

My mother-in-law took me to appointment and we really didn’t know what to expect. We were both nervous. After more exams, we finally got to see the doctor. Keep in mind that this is the same doctor I tried to get an appointment with when this whole thing started who I really like, so it was good to be finally meeting with him. The meeting basically went like this:

Him: I’m pretty sure your vision problems are caused by the cataracts.
They’re like frost on a window.
Me: Do you think they are caused from steroids?
Him: Most likely. Do you want to sign up for the surgery?
Me: Yeah, I guess so. What about the optic nerve, how does that look?
Him: It looks fine, nothing to worry about.
Me: Cool, thanks.

So, that was it. It wasn’t the best news, but it was good news because it was most likely correctable and I wasn’t going blind.

We set up an appointment to meet with the surgeon and left the office much more relieved that we were when we’d arrived. Some phone calls were made and everyone was happy with the news from the appointment.

It was now a few weeks before Christmas and we were scheduled to see the surgeon on January 7th. Apparently, he was on vacation and that was his first day back in the office. I hadn’t returned to work after the lung surgery because of the vision problems — I couldn’t see the monitor nor could I drive at this point. It was going to be a long couple of weeks.

The fact that it was Christmastime was a good thing. I was able to keep busy and keep my mind off of things. Christmas arrived and we all had a good time, the boys got a bunch of nice toys and I managed to get through my first Christmas without hearing.

We set up an appointment with the original neuro-opthamologist who I’d seen in the hospital in October. The appointment wasn’t exactly a second opinion but more of a follow up with a somewhat subtle hint of ‘Hey, just wanted to let you know that you diagnosed me completely wrong.’

The appointment went well, he was surprised with the cataracts but obviously didn’t disagree about them after taking those cool photos of my eyeballs. He also ran me through a couple of neuro-based tests which all came back good. Despite his earlier misdiagnosis, he does have a pretty good understanding of NF2, so he is actually a good person to have in the address book. All in all, my father and I both left the appointment feeling good, which was nice for a change.

My vision has progressively gotten worse and worse as the weeks went by. It’s not so much blurriness as it is fogginess. Everything has a fog over it and my eyes are extremely sensitive to light. It’s gotten to the point that I need to use the Walk/Don’t Walk signs for fear of getting by a car.

January 7th finally arrived and my father took me to the appointment with the eye surgeon. More tests were done, more questions were asked. The surgeon took a look at the results and a look at my eyes and concluded:

“You have the type of cataracts that young people get”
“It’s fixable.”

Music to my deaf ears! We scheduled the first surgery (left eye) for February 10th and the right eye with most likely be scheduled for two weeks later. I got my medical clearance physical done last week and my eye measurements done this week, I’m ready for this to be done with. Two weeks to go!

What’s Next?

After getting the eyes fixed this month, we’ll start discussions with my kick-ass doctors (surgeons) about taking this tumor out of my head. I would like to return to work for at least a few months for both my own sanity and my bank accounts sake.

My thinking is that I’ll be going in for surgery to have the tumor removed and the ABI put in within the next few months. The meetings and decisions continue.

The idea of any more medication is kinda out of the question, since I uh… don’t do too well the side effects and complications that they may cause.

This is not to say that the Lapatinib didn’t do what it was supposed to do, the fact that there was no change in the tumor’s growth was great and a very positive thing for others with NF2 who are able to tolerate the drug long-term. The clinical trial did finally get approved and is in process now. Hopefully they’ll gain some positive results and they can start to treat this crappy disease in a much less invasive way as they do now. Fingers crossed.

Originally written in January 2010 as a Facebook Note to friends.