Tuesday, February 26, 2008

There is no perfect drug just perfect life sentences

The seizure Jan had on Sunday shaked her determination to be off drugs. Two days later, she is getting back to her old self and convictions.

What does Jan do when she feels strongly about something?

Aunt Mary once told me a story when Jan was 16. The family was portaging in Algonquin Park, all with heavy loads on their backs. They were getting to the point when fatigue is greater than the desire to get to the destination, but every one kept walking.

Aunt Mary turned and saw Jan coming down the path, carrying her heavy back pack. She was so tired that she was crying.

Aunt Mary offered her help, to which Jan replied: "I will get there by myself, even if I have to cry all the way"....

That's what she does.

There are many people out there believing that there is a perfect drug that will control their ailments for ever. Jan thinks otherwise, particularly after trying 11 different drugs to control seizures only to find that each had so many negative side effects that the option was a matter of degree but the net result was to go through life dopped out. Many people take the diagnosis of the limited medical knowledge of their physicians with the faith of a convert, and accept the life senteces they issue to take drugs for the rest of their lives. Physicians do not assume responsibility for the broken promises of the drugs. They pass the blame to the manufacturers. In the mean time people go through life chained to questionable prescriptions.

Jan questions everything, including her husband and even her religion.

So, in spite of a new seizure, I suspect she will take responsibility for the risk of staying out of medications. Instead she will be determined enough to go to bed early, to keep strong emotions under control, to keep sounds moderate, to keep lights dimmed and to continue the way to recovery, even if she has to cry all the way...


Wednesday, February 20, 2008

Needles and tonifiers

Jan has been going to a Dr. Acupuncturist from China. She exhudes all this knowledge about how the body functions from a completly different perspective than alopathic physician$$$. She provides quite a sharp contrast about what "care-giving" and a "care-full" person looks like. Jan enjoys the slow pace and relaxing environment when she sees her.

We have been quite dissapointed with an endless list of generalist and specialists that Jan has seen in the past few months. All of them seem to be more interested in their own agendas than providing Jan with reasonable explanations about her progress or challenges. One common element I have witnessed in them is the lack of patience with Jan's communication difficulties. Problably the only exception is Jan's family doctor, who happens to be a woman also.

During the acupunture sessions, Jan lays down listening to soothing music, sometimes she falls asleep. About a dozen needles are inserted in her stomach, some of them with a small electrical charged. Her toes or her firgers move involuntarily as the small electrical current passes through the nerves. After the session, Jan feels great. Sometimes she can see the improvement in her movement or coordination. Is it all in Jan's head? From the outside people can see steady improvement. So, we leave the debate between Western style of medicine based on drugs, and Oriental medicine based on a more holistic approach to the experts. One thing we know: Jan is benefitting from this type of therapy.

The unfortunate part is that this is not covered by OHIP, so it is out of pocket expenses. Regardless, jan continues with this and with the NUCCA therapy she receives from the chiropractor.



Monday, February 11, 2008

Two Years After the Aneurysm

Two years ago, in the evening of February 11, 2006, Jan had a brain haemorrhage on the left part in the area that controls speech, just above her ear. She had an open brain surgery within six hours to clip her aneurysm and to clean the blood that had spilled to other areas. Blood keeps the brain alive when it circulates through the blood vessels. The same blood kills brain cells when it comes into contact with them. Life and death in the same substance. This is the paradox of life Jan and I know too well.

So, what has happened in the past two years?

This whole chapter began when Jan was getting ready to go to a Valentine’s party with me. We were happy, laughing, playful, romantic, when suddenly a little blood vessel with weakened walls burst. The possibility was there since she was born; waiting for that last beat of her heart that would push blood the vessels and rip the walls. That moment came on the evening of February 11, 2006.

The surgeons said this situation was deadly and they would do their best, but there were no guarantees. They also said that if she survived, her speech, movement on the right side and other functions were compromised. Four months later, Jan left the hospital walking by herself, with mild aphasia (speech limitations) and some movement on her right side.

About a month after her operation, a pastor came to the hospital with a group of friends to express Jan their love. He said, God had told him that “everything that belongs to Jan would be restored”. This became Jan’s standard since. With an unwavering faith she began the slow process of regaining more speech, more movement in her right side and more strength, as well as rebuilding her short term memory.

She was an out-patient in the rehab hospital for about six months. She received speech, occupational and physical therapies. The assessments from all the therapists were very encouraging. In the second year, Jan began alternative therapies: a chiropractor from a church she attended in the past applied the NUCCA procedure to help Jan’s body heal itself. This, coupled with a diet of food supplements (glyconutrients) impacted positively her recovery. She made remarkable progress, of course, not as fast as she would like, but she felt glad with the treatment.

On May 2006, she had plastic surgery to put back in the flap bones on the left side of her head. These bones were kept out to allow the brain to swell after the first operation. The operation was unsuccessful because the surgeon’s team failed to notice that the bones (kept for four months in a freezer) were already dead. Jan’s body rejected them and began to slowly re-absorb them. A second plastic surgery to implant an artificial plate instead of the bones was done in September 2007. The operation was 75% successful because the surgeon could not correct a dent on the left temple caused by the atrophy of the muscle that moves the jaw. Jan felt disappointed, but being cosmetic, she decided to concentrate on functions first.

Recently she began acupuncture therapy to stimulate the right side of her body to reconnect to the brain while the brain is slowly reprogramming movement on the right side.

Her speech has advanced considerably. When she is rested, she can carry a conversation at a high level for a good couple of hours. The aphasia is more noticeable when she is tired.

Her energy carries her for a good 6 to 8 hours before she is forced to take a rest –I say forced, because her drive to keep going is bigger than her energy-, and in total, she is awake about 12 hours in a day. This is a remarkable progress considering that she could barely stay awake 6 hours a day when she left the hospital.

Jan volunteers a couple of days a week at the church office. This, along with her medical appointments keeps her busy most of the week. She ventures into the subway and the bus system by herself. Sometimes, when her energy level drops, and it does suddenly, she just lays on the ground. A month ago I was late to pick her up by about 15 minutes; I found her resting on her side on the steps of the church. She is so free of the public opinion that she will rest anywhere without a second thought if she needs it.

We have gone through a lot in the past two years, and sometimes our relationship shows it. We have learned to see this process from God’s perspective: we don’t despair or feel short changed, but we do feel stressed and sometimes impatient. On occasion we find ourselves in conflict more because of how we feel than because of how we are.

Two years of reinventing Jan and reinventing our marriage has definitely taught us the substance of faith and how to find our own substance to continue in this path. We know we could not have done it alone. God has mobilized many people to protect, encourage, help, and challenge us. We realize that when we acknowledge our weakness is when we find ourselves being the strongest through others.

We don’t know where this path will take us. But we are not worried. So far we feel we are better from what has happened. We pray that we will make it as a couple in the long term and some day we will be able to share with other how we found the path in the middle of this jungle. One basic lesson is that nothing is for certain in our life, only God's love.

In the mean time, would you join us and celebrate Jan's Second Anniversary of her new life?


Thursday, February 07, 2008

A story of a seizure

(The original text was lost in the digital hyperspace where all the blogs and bloggers live, so here is version 2.0).

I wanted to share with you a close up of what happens to Jan when she has a seizure. Not to sensationalize the event but to give you insight into what is one of the main sources of anxiety and fear for both of us.

Jan woke up later than usual. Being a Saturday morning, I thought she was taking her time to join me in the kitchen. She turned and tossed in bed but stayed under the blankets moaning softly and long as if it was painful to just wake up. I was making breakfast for her, two eggs the way she likes them: soft but not runny, orange juice, a piece of toast with butter and a cup of tea. I put the food on a tray and brought it to her, then, went to get mine. She was lying on her back, so I helped her to sit up and placed an extra pillow on her back. I sat next to her eating my breakfast with delight. She ate the food fast and in silence. I was looking at how skilfully she used the fork with her left hand. Her right arm was resting, lifeless, at her side. I asked her,
- "do you like your breakfast?"
She said:
- “mmhm, it’s not bad”.
She had an undecipherable expression on her face, as if she had not slept the whole night. Her words were fragmented and slurred.
- “how are you feeling? I asked her.
- “not well” she replied with an empty look on her face
- “did you take your medication last night?
- “always!, always! I am not a child! I am a grown woman, do you understand?

The words were coming out slurred and with frustration. I tried to change the conversation realizing that she felt patronized, but she would not let go. She had finished her food, so I stood up to take her tray away. She was saying:
- “I need a man who can"...

And then, the words just got stuck in her brain. The aphasia would not let her find the words she was looking for to complete her sentence. Her mouth was open, as if trying to say “aaa”, her head moving back and forth as if she was sneezing. But there was no sound. When this happens, I always feel as if time slows down to a crawl. Every second feels like an endless time. I fight with the temptation of filling in with the word I think she is going to say. Sometimes I give in and complete her sentence. Then, I realize that this only fuels more her frustration and I have to brace myself for a quick escalation or a fast retreat from my part.

With the trays on my hands, I was waiting for the words to complete her sentence. Instead, she just fell forward, flat on her face, her forehead touching her knees. She looked like a rag doll, without any supporting internal structure. Her arms crumpled to the side, still holding her fork with the left hand.
-“Oh, no! Please God, she needs your help!”
I said in anguish. I could feel the anxiety and fear gripping me by the throat, making breathing very difficult. I could hear my own heart beating out of control. I took a deep breath while I kept telling myself: stay calm!, stay calm! Focus!

I dropped the trays on the floor and quickly rolled her on her side. I took the folk from her hand and threw it aside. Her face had an expression of a combination of fear and pain. She had her jaw tightly clinched.
-“Jan, are you OK? Jan, can you hear me? Please answer! Stay with me... Jan..., sweetheart! Talk to me!

I reached to the night stand where I kept sublingual pills of a fast-absorption, anticonvulsant medication. These are very small pills that I had to place under Jan’s tongue. I kept talking to her:
-“I’ll get the medication. Stay with me! You’ll be alright. I’m so sorry this happens to you. Ahhh! God, where are you? Jan, hang in there. Open your mouth..."

When the seizure was happening, she tightened her jaw –as if she was doing a great effort lifting something very heavy- . I couldn’t pry her mouth open, so, I just placed the pill inside of her lower lip.

Only 30 seconds had passed. She made a deep guttural sound, she was breathing through her mouth in short shallow breathings, keeping her teeth clinched, while her eyes rolled back and forth. Her limbs became very rigid and she began a series of jerking movements – later I thought that, ironically, these movements are very similar to the jerking one makes when laughing or crying out of control- Her whole body convulsed as if she was receiving electrical shocks. Thick saliva formed foamed in her mouth.

The only instructions I had received from the doctors was to give her the anticonvulsant. A nurse once told me to keep her on her side to avoid her choking with her own saliva, and protect her head so she would not hit it against a hard surface.

I kept her head resting on my leg while all her body continued convulsing. I felt this burning sensation going up and down my chest, as if I was being scanned with a red hot iron ring just a few millimetres from my skin. I felt warm tears running down my cheeks and falling on Jan’s hair. My mind was racing with dozens of thoughts: Who should I call? Should we go to the hospital? No, we know it is a waste of time... they’ll just pump her full of drugs, keep her for 24 hours and then just send her home...the emergency room is such a dreadful place, why is this happening to Jan? It’s so unfair! How, I wish you were healthy again! I remembered our agreement, that if the seizure it lasted more than 10 minutes, then I would call emergency. I kept looking at ther, so helpless, her body out of her control. This view was painful, like a stab on my chest. However, the most painful part for me was the feeling of absolute impotence. I believe that it is my responsibility to protect my wife from physical harm. And here she was, convulsing, and there was a-b-s-o-l-u-t-e-l-y nothing I could do to protect her from this seizure. I don't know if being compassionate hurts always this much, but I knew I was hurting then.

I kept talking to Jan,
-You’ll be alright! If you can hear me and can tell your brain to stop, please do it! ...I’m right here. I love you... Just relax your body and stop shaking... Oh Jan, my sweet wife...please wake up!

I passed my right hand slowly over Jan’s hair and wanted to sing her a soft song, but I couldn’t remember one. I felt so tired, I wanted to sleep and not wake up in a year. I kept touching her hair and keeping her on her side. I had a perplexing feeling that her body and mine were somehow connected, and as she was having a seizure I was experiencing its echo.

The convulsions stopped slowly after about three minutes. Her body began relaxing. I rolled her on her back. She was unconscious. Her breathing became slower and deeper. I opened her eyelid; all I could see was a dilated pupil looking nowhere.

I took al the dishes back to the kitchen and cleaned her face with a damp cloth. I put her again under the blankets. She remained unconscious for another 30 minutes. I said a silent prayer. I was relieved that it was over.

Just as suddenly as it came, the seizure had stopped. The room felt like a large convention hall utterly empty. The after-storm silence was comforting. She would be alright this time.

We know the triggers that will cause seizures. We know over a dozen medications to control seizures. We also know that Jan is hypersensitive to these drugs and that they do not protect her from seizures. Consequently, at the end of the year, we decided that Jan would stop taking any anti-epileptic medication.

The two reasons that helped us get to this decision were: first, the magnitude of the side effects Jan gets from these meds are not acceptable; her quality of life is dramatically diminished compared to the low protection from risk of seizures Jan gets. Over the last year and a half, Jan has tried about a dozen different drugs looking for one that would work controlling the risk of seizures, while at the same time having minimal or no side effects. Sadly, all of them caused her to have slurred speech, drowsiness, fatigue, headaches; some caused dizziness, irritability, depression and a general feeling of uneasiness.

On top of the side effects, Jan kept having seizures despite taking the drugs. So we began suspecting that most doctors were really behaving like pill-pushers, instead of considering Jan's struggle with the drugs. Some time around the end of the year, Jan's sister who has an adoptive baby son with another form of epilepsy attended a seminar about anti-epileptic drugs where the MD lecturer indicated that the drugs are ineffective with about 30% of the patients. No one had told us anything about this, and since the neurologist in charge of Jan's file was not available to see her until 6 months from now, we just decided to take charge of her well-being and stop the medication after consulting a doctor who saw Jan when she was in a rehab hospital. Jan just went cold turkey.

One of the main causes of seizures is sleep deprivation. Every time Jan has had a seizure has been after a day of lots of activity, strong emotions, and little sleep. Jan began having seizures the day the plastic surgeon put the flap bones back on her head (about four months after the aneurysm). Since then, she has had a seizure every three or four months. Her condition is minimal compared with epileptics who have one or more seizures a day. I some extreme cases, the seizure can go on for hours. Labelling her as an epileptic put her into a category that she does not really fit. This is one of the shortcomings of our medical system: once a physician labels a patient, it is hard to get rid of the label and convince other physicians that there is an individual behind the label. Once Jan was labelled as epileptic, she was dumped into the same box with other patients with more severe forms of the disease. One neurologist told her that the EEG showed that her seizures happened on her scar in her brain. That there was nothing to do about it other than controlling the risk with drugs for the rest of her life.

Of course, he didn't know what is Jan really made out of...