Peter Lalor

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April 06, 2005

Resurfacing

Dear Friends and Family,

It has been some time since I have written an update on Peter's condition and how our little family is faring. I am not sure what I am going to write in the subject line when I finish this. 'Notes from Hell' and 'Darkness Down Under' are contenders.

For months prior to Peter's surgery Peter and I both felt as if we were riding on a tremendous wave of Grace. We were carried and guided in clear and extraordinary ways. I never really felt self pity or disconnected from Grace during that time. Primarily I felt like an unwavering and strong warrioress with plenty of strength and a deep capacity for love and compassion. I rose with Dylan between 5:30 and 6:30 most mornings and multi tasked all day. After Peter and the kid's needs were taken care of and they were asleep in the night I would get on the computer to answer emails and continue researching brain tumour treatments. I would crawl into bed well after midnight most nights; usually just in time to get a quick nap before Dylan would wake a time or two in the night. I figured I just needed to get Peter through his surgery and then I could get a rest while he was safely recovering. Wrong.

Post surgery was a different story. The whooping cough knocked me down a long with the rest of my little family, I disconnected from Grace (though I am certain it still surrounds us), instead of guidance I have only heard static and the exhaustion of sleep deprivation has proved extremely challenging to my mind and body effecting my mood and daily function. Where did the invincible warrioress go?

Many of the healing protocols that I had been helping Peter with fell to the way side. This has been very upsetting for me not to mention Peter who relies on my keeping everything rolling. At the same time (and at first undetected by either Peter or me) the anti seizure medication Peter has been on started making him feel intensely hostile and depressed. I don't think I need to spell out the recipe that was being concocted by my exhaustion and need for a break with Peter's aggression and depression. Let me just say that it has been a stark contrast to the Grace, light and abundance we were feeling previously.

Luckily my mother and her husband were here for 7 weeks and helped tremendously with the children. That saved me from completely falling apart. Thank you Mom and Tom.

It dawned on Peter that what he was experiencing was related to the drugs. (You can read more detail about that if interested in his journal on the web site: http:peterlalor.org). I looked up the drug on the US FDA website to find a list of special cautions regarding Keppra. Ninety percent of the list described Peter's symptoms with 'anger, aggression and hostility' listed in red type. BINGO. I got on the phone with doctors and we decided to start decreasing his dose until we could find a balance or switch to another drug. Peter was really hoping that he wouldn't have seizures anymore after the surgery. For now we have learned the hard way that he definitely has to be on something. Peter's mood started to improve within 24 hours of decreasing the medication (to stop abruptly would actually cause seizures). Within two weeks he dropped down to half the dose he had been taking. Approximately ten days ago he started to have mild seizures here and there. Then the bomb dropped.

A week ago Monday Peter had a prolonged complex focal seizure that we couldn't get under control. Abstract fear and at times terror were strong features a long with chill bumps that would start on his left arm and run all through his body and up his spine into his head. He was sweating yet felt like he was freezing. He was also vomiting frequently either due to a neurological affect of the seizures or a tummy bug. The doctors don't know. He temporarily stopped breathing twice after vomiting giving both of us a terrible fright. I took him to the Emergency Room three times in as many days and eventually he was admitted for re-hydration given he was vomiting bile and unable to keep anything down. He is home now, on an increased dose of the anti seizure medication and showing improvement each day. Thank god.

I am so broken hearted to see him suffer any more than he already has. That really got to me this week. Peter says this latest episode was way worse than the awake craniotomy. Can you imagine?

We have an appointment with the neurologist tomorrow to have another MRI done and determine a better medication for him.

As for me I hit bottom last Friday. I have felt like I am in a giant hole that I keep willing myself to dig out of with no results, only a feeling of failure. I finally had a big cry and talk with Saul a few days ago. I haven't felt like I have had time or space for the luxury of emotional expression these past months. I have pushed my feelings down so as to keep going for those who rely on me. Lo and behold after a big cry and chat I could think more clearly (advice I would have given to any friend in my shoes). Releasing the pressure valve on myself has allowed me to come up with a new plan for support. I desperately want to get on top of helping Peter with the foods and therapies that I believe will give him the best chance at complete recovery. I am feeling relieved and light is starting to enter my world again.

So that I can keep going in this marathon and give my all to my family I am making a commitment to have a massage/body work every other week and see a counselor every other week. I have realized a couple of crucial things through the darkness of this latest chapter. One is that it is natural for any process that is truly wholistic to have a dark side as well as a light side. The journey through the dark side is arduous but fruitful if I relax with it as much as I am able. This is something that I would say I already know well yet I couldn't access that knowledge lately. Another is that I have been setting myself up for a huge guilt trip should Peter follow the prognosis the doctors still put out to us and die from re-growth of the tumour.

Because I am doing a vast majority of the research and organizing Peter's treatments both standard and alternative and because I haven't been consistently on top of it all since the surgery I feel hugely responsible for Peter. I have had an inner refrain tormenting me lately which says that I am killing him by my inability to stay organized and on top of it all. This has been weighing so heavily on my heart. Of course ultimately the decisions are Peter's to make but he relies heavily on me to seek out the options and inform him. To complicate matters I have also had days when I feel so fed up with being a 'care taker' and really don't want to know about Peter or the children's needs. That really gets my psyche in a twist but I have to be honest and admit I am not a saint. I know this all comes from being stretched and challenged further than I ever have been in my life.

The action I am taking in addition to the above mentioned commitments involves hiring a person five days a week to come in and cook lunch and dinner, food shop, make fresh juices for Peter and keep an inventory of supplements. We need a specific healing diet for Peter which is a full time job in itself. The government may subsidize part of the helper's salary and Peter's mother and step father have very graciously offered to help out with the rest. Making this decision has lifted a huge weight for me.

As for the children, Dylan continues to be a happy, little chap and so delightful to watch grow. Chloe continues to be lovely, mature and so accepting (for a five year old) of all the attention Papa needs. We are blessed with beautiful, healthy children.

I hope this fills you in on the last couple of months. My apologies to those of you who have written and not received a reply from me. You are all in my heart and I am deeply appreciative of the care and resources you continue to send to Peter and I.

We will have to decide on the details of Phase II of Peter's treatment within the next few weeks. When we have more information about that I will write again.

Until then may you and your loved ones be blessed and may sunshine always follow rain.

Much love,

Jennifer

Posted by Peter at April 6, 2005 03:39 AM

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