Our Journey Through Hell: Chapter 3

By Angela March 6, 2011

This chapter is best read while listening to Come Back by Pearl Jam. Inhale the song. It completely captures the feelings felt for the 17 days that took place in this chapter. On another note, this chapter is made up of paraphrased memories from both myself and Steve. Shock took over. Completely, took over for Steve and myself. And then, the MS fog rolled in. Days have been wiped clean from our memory. Details, lost forever. We are tortured by this. But, we are thankful, none the less, to not have to carry a daily burden of those memories.

Sirens or no sirens, Grace woke up and by the time the EMT’s had arrived she was snuggling with Lenna on the couch. I don’t remember saying goodbye, but I’m sure I did. I do remember the cats finding the EMT’s equipment incredibly fascinating.

The next challenge was getting me to the ambulance. To enter my house from the driveway there are 8 steps. You are then faced with another 10 to get upstairs where the bedrooms are. They managed, and then loaded me into the back. It was my first time ever in an ambulance. This would be my first time as a patient except when I gave birth, and even then I was only in the hospital for 24 hours. I was about to become a patient for 8, almost 9 weeks.

But I didn’t know that yet.

The EMT’s asked a whack of questions, none of which I specifically remember. I do, however remember one question. But not because of what or how it was asked, but because of the expression on the EMT’s face when I answered. He asked me how long I’ve had MS. I, flatly said: since Friday. It was early Monday morning, around 3 am. His face, I’ll never forget it. He had blond hair, blue eyes and was about my age, maybe a year or two younger. But he looked, at this point, very shocked. As if to tell me, that there is no way this can be MS. He carried on making small talk, while he checked my vitals, until we arrived at the hospital. I was placed in a room to be further examined by a doctor. Steve, who had followed the ambulance to the hospital found me in this small but private examining room.

I had become completely paralyzed on my left side.

I was examined by the emergency room doctor who quickly realized I was beyond his capacity to treat. So, a neurologist was called. He, immediately requested I be taken for an MRI. But not before he mentioned Lymphoma.

Again. Again, I’m hearing this word.

No. I, have MS. I have MS, and I’ve accepted that.

He told us, that it wasn’t possible to diagnose me with MS by only having an MRI. I should have had a spinal tap. That is the only definitive way to diagnose. This could very well be Lymphoma. NO! Not that word again.

Off I went to the MRI.

I wasn’t back to the little room long before the doctor was discussing the results.

You had an MRI on Friday. Yes. It seems that the lesion, the one that gave the other Neurologist the impression this was MS, has grown. It’s quite large. There are also 3 more new lesions. Since Friday? In 2 days? I’m afraid so.

Stunned. Like, mouth wide open, stunned.

He proceeded to tell us, that it was also very possible that this was MS. There is a certain type of MS, that is aggressive, that produces lesions that appear on scans to look more like a tumour because they appear to be in a large mass or clumping on the brain. This type of MS is called Tumefactive MS.

Stunned.

So what now? Well, we’re going to try steroids. By IV, and see if that relieves some of your symptoms. And if it does, we’ll keep you on an oral form of the same drug. Ok. Whatever.

Stunned.

Immediately after the steroids were administered, I was walking. I walked to the bathroom on my own. I felt a lot better.

I was moved to a room on another floor. It was a private room, but not in the neurological wing, so I would be moved again, but for now I had the room to myself. I was loving that I could walk and move again. But in my head, was a fog. A fog that would be referred to as the “MS fog”. It turned out to be a long term resident of my head which prevented me from thinking clearly or organizing my thoughts or making any kind of rational plans or suggestions.

By bedtime, I was paralyzed again.

Two days later I had another MRI.

Bad news.

The large tumour was still large, but the smaller ones had grown. One of them grew to be the same size as the original largest one.

There is a significant possibility that this is not MS, but, in fact, Lymphoma.

OK.

The only way to know for sure, is by biopsy.

What?

A biopsy will take a small portion of the tumour and we’ll run some tests and be able to either rule out Lymphoma all together or at the very least have a diagnosis. If it is not Lymphoma it is most certainly Tumefactive MS, but we’ll also be doing a spinal tap to make absolute certain.

The biopsy would be scheduled as soon as possible.

Oh, my god. A biopsy. They are going to cut my skull open, take out a part of my brain and sew, no, staple, me back up. Oh, my god. Brain surgery. Brain surgery! Certainly, I am not strong enough for this. Oh, my god. What if what they do find is cancer. Oh, my god.

I remember wanting to know, how much time I would have if it was cancer. I remember desperately wanting to ask. I do remember not asking because I could tell by the tone, the feel of the room that the answer to that question would not be good. I remember realizing that if it was cancer, this type of cancer, that my family would probably be celebrating Christmas this year without me.

The MS fog took my memory of the following few days. I had my spinal tap.

I do remember wanting my father in law. My father in law would know what to do. He had, had brain cancer, had surgery, radiation, surgery, chemo and then succumbed, but he would know what to say to get me through this. I asked for his picture to be brought to me. I needed him in the room. I need him to get me through this. He wasn’t ready for me yet, and he would get me through this.

At some point, I have no idea when, my mother in law, Dianne, flew back out from Ontario. My parents had been caring for Grace and needed help and to be relieved. Steve was at the hospital day and night, night and day.

Exactly one week after the ambulance brought me to the hospital, I was in surgery. Steve told me after, that my best friend, Tasha, had been there before I went in for the operation. I have no recollection of her being there, I know that she visited me in the hospital later, but I don’t remember her being there before the surgery. I’m amazed though, by how powerful our friendship is. She knew to be there, when I needed her the most, even though I had no idea she was in the room. She knew, by just being there, I would feel better.

I have no idea how long the surgery was, what they did, or how they did it. (That was, until I saw an episode of House M.D. and a character underwent a brain biopsy. Seeing that, seeing something I know happened to me, but something I can’t remember, sent me into a tail spin. Steve grabbed me, held me and said ‘it’s over, and you survived’. He was right. I had survived. Months later, I had survived.)

I do know, I had a portion of my head shaved (which grew back only to produce the loveliest of cowlicks) and had 10 staples in my head. The area of skull that was drilled for the biopsy needle, to extract the sample of the tumour, has healed, but has formed a dent in my skull, similar to a baby’s soft spot. Awesome.

I remember the man in the bed across from me, in the ICU room. He had fallen off a roof, was in traction and about one step away from being classified as being a ‘vegetable’.

Now, our Christmas lights are displayed on low lying bushes and shrubs.

We were told that it would take 10 days for the results of the biopsy to come back. They prepared us for the worst. They said, if it was lymphoma, that it wouldn’t be good.

It wouldn’t be good.

I remember Steve. Oh, Steve. His face said a million things to me. Most of all, it said: Widower. Single dad. I thought of Grace growing up without a mother. And I wept, cried and wept and cried some more.

She was only 3 years old. Young enough to grow up to eventually not remember me.

I thought of all the things I wanted to say to Steve, to Grace. I thought of all the plans we had, that would go unfinished, all the goals that would go unreached.

I was so angry. I wanted to get up and scream and throw things.

But I couldn’t. I was still paralyzed.

24 hours after surgery I started to speak incoherently. Started to rip at my finger nails, some of which I ripped off to the quick. I was completely positive I was dying. Steve remembers me moaning and muttering and asking what was going to happen to Grace? What was going to happen to Grace?

I was rushed down for a CAT scan. It revealed swelling on my brain. They treated it. I was ok the next day.

We were told that they were going to continue with the intravenous steroids, to reduce the inflammation of the lesions because if it was Lymphoma, it wouldn’t do any harm, but if it was MS, we would be further ahead.

They were also going to begin another treatment. Plasmapheresis.

This would involve removing plasma from my blood, cleaning it and putting it back into my blood. It was believed that in doing this, any of the antibodies causing and contributing to the inflammation of the lesions would be removed. This process, of ‘cleaning’ my plasma would be done in a machine similar to dialysis. To extract the plasma, a large tube would be surgically inserted into my chest and attached to a port. I have an awesome series of scars on my chest now. The treatments would be once a day for 5 days. It made me nauseous. And very tired.

10 days after the biopsy I was diagnosed with Tumefactive MS. I officially had MS. Well, the spinal tap would confirm that, 8-10 weeks later, but it wasn’t Lymphoma.

We were told that Tumefactive MS is more aggressive than any other type of MS. At this point we didn’t even know how to spell tumefactive, let alone know that there was more than one type of MS. We were so lost.

But, it wasn’t Lymphoma.

I would live in the hospital for another 3 weeks. I would then be transferred to the Rehabilitation hospital.

That is where I learned how to walk. Again.