Coming Home – May 10^th, 2006:

And so I boarded the plane once again to fly back to Vancouver, WA. I remember this day just a little bit, but I thought I was on a jet boat instead of a plane. I guess I was still a little bit out of it.

Although things would get better from here on out, I had a very long way to go. I was so weak from weeks of inactivity that I wasn’t even able to roll myself over in bed. I felt like someone had turned up the gravity in my room in order to keep me there. I still wasn’t thinking rationally, so I couldn’t understand how people could walk around with the gravity so strong. I thought they must have incredible strength.

My family, who had taken shifts the entire time I was hospitalized so as never to leave me alone, continued to be an incredible source of support. I couldn’t stand, sit up, turn over in bed, take myself to the bathroom, or shower myself. I had to transfer to the commode when I needed to use the bathroom. I needed help to get in the wheelchair if I needed to go down the hall for therapy. I honestly thought I would never walk again. My legs had atrophied almost entirely, and I couldn’t imagine them ever being strong enough for me to stand on.

The Neverending Gravitron:

If you’ve ever been to a carnival or fair, you may have noticed a spaceship-like shaped ride called the Gravitron. It spins so fast that you stick to the wall you are leaning against at the start of the ride. This is fun as a kid, but when it becomes your reality, it can be quite bothersome. This is exactly how I felt in rehab during the month of May 2006. I couldn’t see how I could ever get up and walk, even with assistance. I came to the conclusion in my mind that I would just have to use a wheelchair for life.

Through hard work and lots and lots of physical and occupational therapy, however, I got to where I could walk with a walker. I still couldn’t walk very far, and the gravitron was still spinning, but it was an improvement. By the time I was discharged on May 29^th, 2006, I was only using the wheelchair part of the time. I still needed some assistance from a sitting to a standing position most of the time, but once I was up I could walk throughout the house with my walker. No stairs yet. That would come later. For now, my husband would have to do most of the housework, and of course, anything requiring stair climbing.

Recovering – Summer 2006:

Once I was seeing some improvement in my condition, I started getting encouraged about returning to life as I knew it before my brain tumor. My sister came to visit for the summer, and we went to the gym together to try and build up my strength. I would use my walker to go from machine to machine and do light weight reps on a variety of exercise machines. I wanted to climb stairs again, so I would do the stair master to exercise the necessary muscle groups for this activity. I also wanted to ride a bike again, so I would use the exercise bike as much as possible. I couldn’t pedal fast enough for the machine, however, and it would shut down on me. I was discouraged at this. I felt like I was pedaling so fast, and I couldn’t understand why it wasn’t fast enough.

I had to watch my heart rate, as it had been high since my last big downfall. I was taking a beta-blocker, Metoprolol, to control my pulse rate, but it still seemed to soar when I would exercise. I hoped to eventually get off of all my medication, since my condition had improved substantially. At the time I was discharged in May, I was still taking a pile of medications, including:

Lexapro – for depression

Klonopin – for anxiety

Provigil – a stimulant

Metoprolol – for my heart rate

Ambien – as needed for sleep

Vicodin – as needed for pain

The good news was that Dr. KK had decided that a second round of chemo wasn’t necessary. The doctors on the rehab unit had tapered me off of the Decadron (steroid medication), as well. I had been on such a high dose that it took weeks to taper me off. I remember when I was in rehab I couldn’t even rub my lips together because my face was so bloated from this medication. I would put chap stick on and wouldn’t be able to rub my lips together.

I was happy to get off the Decadron, and I desperately hoped that I wouldn’t need it again. My face eventually started “deflating,” and I looked more like myself after a few months.

I had a little bit of a struggle with the insurance about the stimulant medication, Provigil. They wouldn’t cover it, so I had my physicians assistant (PA) submit a prior authorization to them. I received a letter that it was denied due to the fact that I didn’t have one of the two conditions required for them to cover this med. The two conditions they would accept were 1) Narcolepsy or 2) Multiple Sclerosis. Non traumatic brain injury didn’t cut it. I guess I was out of luck if I wanted to take this medication. I would have to pay or not take it.

Given the fact that I was on disability now and having to watch my pennies, I opted not to take Provigil if I had to pay out of pocket. There wasn’t a generic alternative, and it was quite expensive. My PA, Amy Josephson, got me samples of the med so I could continue. I was still pretty tired from the events of the past 7 months, so I still needed the med for awhile. I would taper off as soon as I was feeling better.

I had never wanted to be on an antidepressant. I remember the first couple of times being in rehab they had me see a psychologist. Of course I cried during these sessions. I was going through hell. But when they mentioned the option of an antidepressant medication, I always refused. Being a pharmacist, I knew about these drugs and the side effects. Plus, I didn’t really feel depressed other than the fact that I was going through such a tough thing. I really felt like just dealing with it. I thought I was doing a pretty good job of it. If I was sad or crying, I felt like that was normal. Why shouldn’t I cry when life as I knew it could possibly be over? I wanted to feel what I was supposed to feel. Aside from all this reasoning, I had the best support system a person could hope for.

Eventually, I decided to give an antidepressant a try. It was May of 2006, and I was in rehab for the 3^rd time. This is when I felt like I was on the gravitron. I tried to explain to RoseAnn, the psychologist, that I felt all this “pressure.” I meant physical pressure, but I think she thought I meant emotional pressure. This is when she encouraged me once again to try the Lexapro. I finally decided to give it a try. I would give it enough time to work (up to six weeks in some cases), and taper off if it didn’t help.

Vision Problems:

In the summer of 2006, I seemed to be improving on a daily basis. I was getting around the house pretty well, and sometimes I could stand up from a sitting position on my own. One day in church, I noticed that I was starting to have double vision. I could see two Pastor Skips speaking. This worried me. I told my occupational therapist, Ann, about my new symptoms. She placed a piece of tape over one of my lenses, and everything merged into one again. Ann explained that the tape would allow light to enter, but would block my vision enough so I mostly saw out of one eye. She encouraged me to make an appointment with a neuro-optometrist in Clackamas, OR, Dr. Bruce.

I saw Dr. Bruce on June 23^rd, 2006 for the first time. He did all kinds of diagnostic tests, including a visual field exam and several eye merging tests. He prescribed a special kind of lens containing prisms, which would allow my eyes to see single instead of double. He also prescribed vision therapy, which would help train my eyes to team together like they are supposed to.

The good news was that I could go to vision therapy at the Vancouver office. The bad news was that insurance didn’t cover vision therapy, and each visit cost about $100. Insurance companies were continuing to stand in my way of getting better. I was starting to understand the frustration of people getting jerked around by HEALTH insurance companies. I’d seen it before, as a person who had worked in the medical field, but I’d never experienced it first hand.

Luckily, my vision therapist was able to supply me with apparatus to perform many vision exercises at home, and I would have an actual appointment with her about once a month. I was diligent about doing my vision therapy each morning. I wanted to get better, and it was encouraging to see improvements in my vision.

Money Issues:

Unfortunately, when one is too ill to work, the bills don’t automatically stop. When I had realized I wouldn’t be returning to work any time soon earlier in 2006, my mom had applied for social security/disability for me. I had long term disability through my job, but it didn’t kick in for 6 months. With all my emergency surgeries and problems that started in December of 2005, I was out of my CAL hours (Combined Annual Leave) by January of 2006.

The people at the hospital were amazing. The employees there donated their very own hard-earned CAL hours in order to sustain me as an employee at SWMC. Not only was I getting full pharmacist wages, but I was able to keep my health insurance through the hospital without going on COBRA. This lasted for four months until social security started issuing me checks for disability. It would be a couple more months before I’d be eligible for long term disability, but at least I was starting to get a plan of my own. I felt guilty using other peoples’ vacation hours.

When I started getting checks from disability/social security, my mother informed the pharmacy department that I would no longer need donated hours. This would mean that I would have to take medical leave from the hospital and start paying COBRA in order to keep my health insurance. I was shocked at how much this was going to cost. As an employee of the hospital, I paid roughly $100/month ($50 per paycheck) to cover both my husband and myself. On COBRA, it would cost me $500/month JUST FOR ME. If I wanted to continue my husband’s coverage, it would cost me $1000/month! This is how much it would cost for someone who was too sick to work and who was getting a disability check in the amount of approximately 20% of her previous wages. It was unreal, but I had to keep my health insurance.

My family agreed to take turns paying the COBRA bill of $500/month until my long term disability kicked in. We had filled out the necessary paperwork and had the doctors fill out their portions. I figured at the six month mark they would clearly see I was disabled and in need of this income. I told my husband that he better not get sick because I couldn’t afford the $1000/month required to cover us both on health insurance. It’s such a shame to have to gamble with your health, and I felt guilty that I could not provide for us in the way I had in the past.

Mid-June came around, and I had been home from the hospital less than a month. My mom had been dealing with the long term disability company since my six months had arrived, and I should have been eligible for payments. My social security checks were covering my mortgage only, so I needed this other money. I knew I had to keep my health insurance, since no one would accept me once I had a lapse in coverage, not with the pre-existing condition that I now had.

My mom had talked with the long term disability insurance company once they started dragging their feet. She said she got frustrated and said, “Are you waiting for her to die so you don’t have to pay?” Their response to this was that if I were to die that my husband would get the money I had coming. What a hell of a lot of good that did me.

I ended up taking over my battle with the insurance once I was mentally sound enough to do so. My mom was at the end of her rope with them, and I figured I’d give her a break. I called the agent (who shall remain nameless here) every day to check up on the status of my claim. I would say she called me back once out of every 5 or 6 phone calls, and she NEVER answered when I called, not once. When I did talk to her, she made it clear that they were going through my medical records and that they wanted to make sure this wasn’t a “pre-existing condition.”

I was frustrated beyond belief. I had worked since I was 16 years old. I had worked through college and paid off my student loans. I had always counted on myself, and the one time I couldn’t count on myself, they treated me like I was trying to abuse the system. Why would they think I would go through all this trouble to get disability of half my wages when I had a good job I could work IF I could work? People shouldn’t have to deal with this crap when they’re sick. It’s wrong.

The insurance company spent another few months digging through my medical records, making sure I didn’t have a “pre-existing condition.” I think they were trying to find something, anything, to get out of paying me. But they didn’t find it because it wasn’t there. As I said before, prior to my brain tumor problems, I rarely went to the doctor.  I finally called someone high up at the hospital and told them what was going on.  It’s funny that just days later, the insurance company called me and told me they were issuing me a check.  It was nearly 3 times what my monthly checks would be.  That’s how long they took.

I think it was September before I saw my first long term disability check. It’s funny because I planned on working again at this point. I was doing so well that I could actually see myself going back to work part time. I told myself that if I had two good head shots I’d plan on returning to work.  At this time I was having head shots every other month.  My vision was better, my strength was improving, and I would be able to drive soon.  Being well enough to work was my biggest goal.