Baha’is believe in life after death. It comes with its own set of responsibilities. We believe that the body is a vessel for the soul. Effectively a bucket that contains your soul. Once the bucket is full, you kick the bucket, as it were. Different people, different size buckets. This is not a competition to see who can fill up their bucket first. It also helps explain the death of people at different ages.
Baha’is are not allowed to be cremated. We end life by returning to the earth, completing the circle. Our ceremonies are short, except for this one prayer for the dead. It consists of 19 verses that are recited 19 times. Though not considered a holly number, the numbers 9 and 19 appear frequently in the Baha’i faith.
We are exhorted to be detached from all material things. They have such little intrinsic value that we should put our efforts in improving our spirituality as opposed to massing huge amounts of wealths and possessions. Is that Van Gogh really worth millions?
Another virtue we are told to exercise is that of moderation. We are told to use moderation in all things. Including moderation in using moderation. There is a mind bender. There is an issue at this point. Maybe that Van Gogh is worth the millions as opposed to something else I have in my art collection. A moderate price indeed.
I was back in hospital last Wednesday evening with a temperature of 38.5. My temperature was down to normal by the time we got to the emergency room. I knew the answer to the question about whether I was there to see a doctor or not, this time around. I think I also looked a bit sicker than last time we went in. The emergency room was quite busy. I was eventually ushered in. Blood tests were done, cultures raised. I was held in the unit all night. They had to draw more blood at three in the morning for more cultures. All to prove that I was the picture of health, except for the amazing number of metastasized tumours in my lungs.
And therein lies the issue. The lungs are being infected at an alarming rate, with the tumours frolicking hither and tither having the time of their life. I was sent home from the hospital and told to control my temperature fluctuations with Tylenols. Not much the system can do for me at this point.
The trials had failed. I was referred back to Dr. Hedley who is on sick leave waiting for his knee to heal. EMails were sent and an appointment was made to see Dr Hedley on Friday afternoon. Decision time.
I was optimistic. I had assumed that the inflamed liver was due to it fighting the tumours and winning the battle. The hospital visit appeared to make a mockery of that thought, but I held on to my optimism. Dr. Hedley came in on Friday afternoon specially to see me. He gave Janet and I a gigantic hug and we went into a consulting room. Shahnaz, my wonderful nurse was there, as was a student nurse. We had a 90 minute consultation. The decision to be made was the following:
1. Do more Chemo. This is the FULLFOX treatment. Side effects include numbness of the fingers and toes, extreme sensitivity to cold, to the point where you cannot open the fridge door. Ideal for a climate such as Canada’s. There would be a 30% chance of success, which in my case would mean slowing down the growth rate. We would know within three months if it was working and would have to stop the treatments in six months. We would then be back to where we are now.
2. Do nothing and let nature take its course.
The obvious question that came up is what does the status quo mean. How much time do we have. I had to ask since that was the only way we could come to some decision. The answer was quick and shocking. I have two months.
Dr. Hedley was quicker to add that the number is not written in stone, specially given my record. Regardless of its accuracy, the amount of time left is counted in months. What were we expecting. A year, Janet and I said. He shook his head sadly.
There it stands, two to four months.
We are numb. What is there to say. My sense of humour fails me. I have nothing to say. Janet says she does not accept the verdict. She is defiant. But there is little left to say.
I have spent the last few days letting people know. Tears have flooded involuntarily. We are all sad, living in a surreal existence trying to make sense of this. Two months is such a short time. This is October, then November, then December and the end. Maybe. Still too close for any level of comfort.
We are about to start doing the practical stuff. Transfer all the accounts to Janet’s name. Complete a power of attorney. Put together a living will? Make sure we have people to look after the house for Janet. The furnace repair man, the contractor, the computer technicians. We are making a list tomorrow. Janet is taking time off work so we can spend more time together. It is all so mundane, and yet I feel fortunate that we have the time to do these things.
I have stopped day dreaming. Seems little point to it after all. What will my kitchen look like? My garden? The thoughts are barely in my head before the streaming stops. Almost as if my computer has frozen requiring a reboot. I have trouble sleeping at night. I lay awake often to two in the morning until exhaustion takes its toll. Is that becomes dreams are now harder to come by? What is there to dream about? I have no idea what the after life looks like.
Will I see my parents again? Will there be a welcoming committee? Bunch of girls in hula dresses dancing and draping flowers around my neck? OK, so I watch too many movies. Will I see old friends, like Judy Elder? I imagine the after life as a continuum into eternity. A progression of the soul as it moves through the ether. The evil ones start lower while the saintly ones have the advantage o starting on a higher plane. I figure I am somewhere in the middle. I will be happy as long as I can Gandhi and not Hitler.
We have also started planning for the final days. We have an appointment with palliative for November 9. An appointment with the funeral home on Tuesday. The strangest part of all this is that I am basically healthy and sound in great spirits. I called the funeral home. Has the person died yet? No, I am working on it. Everyone is amazed that I am still laughing and joking. I figure these are my final days. I would like people to remember me with joy on my face rather than sadness.
My mother spent the last three weeks of her life in hospital. She was not in very good shape. I spent a couple of hours with her on what turned out to be her last night. We had always been very close, except during her cancer period. She turned to Fetneh to look after her. The last night was very precious to me. I showed up at hospital around midnight. Those were the days of lax security. We talked a lot. She had made sure that no one would be allowed to see her in the last three weeks. She said the way she looks is not the way she wanted to be remembered. She died the next morning. I remember looking art her body lying in peace, finally and thinking she is indeed dead. The soul has left. That last memory has remained with me for the past 31 years. She was right. Remember us with the passion we had when were in good shape, not as we lie in pain in hospital.
We are going to Atlanta next weekend. Leaving on Friday, returning on Monday. It has to be short. We cannot take the chance of something going wrong while in the U.S.. We have been told that things could go from right to wrong in seconds. I believe it. I wake up sometimes, not feeling quite up to snuff. I return to bed to recover my strength. This morning was one of those mornings. I seem to be fine now. Nothing like a bunch of steroids and Tylenols to perk you up. The steroids open the lung channels, and the Tylenol deals with the pain. Miracle workers between them.
We are staying in a hotel in Atlanta. More privacy. Devin is coming down from New York, and Fetneh is joining us from Montreal. My family is planning on spending a lot of time with me over the next little while. Fo’ad has cleared his schedule and intends on coming up to Toronto to spend a week at my place. Our hotel is opening its doors again.
The whole situation is surreal. I will keep saying that. There is not other way of looking at it. You talk about your own imminent death. What kind of conversation is that to have? Defies sanity. Everyone keeps asking what they can do for me. The only thing left is to enjoy each other’s company. Talk, laugh, have a good time. Nothing else matters.
I am planning to have a plain casket, made from pine. I am told that these are available. I would like a stamp placed on top that says: Property of God. The style will be along the type that was used in raiders of the Lost Ark. I am not going to have a guest book. We will instead have markers of different colours available so people can sign the casket. I can have your names with me for the next part of my journey. That will also save Janet from having to send thank you notes to everyone. Consider yourselves thanked.
This has been a very difficult entry to make. We received the news last Friday. I have had this open on my computer for a week now trying to find the right words and cadence.
I thank you for being there. For listening, crying and laughing. Hopefully more of the latter.
so sorry and sad to hear the news
Gald I could be a part of your cirle of life, thanks for all the laughter and most of all your kindest.
Hope to share laughter with you soon
It really is impossible to take this in. Seeing you today, your "usual" self makes me more certain that this is just a bad dream. I can't even begin to imagine how you are going through these unbearable next steps with so much grace and composure. And humor, as always. I will treasure the good times still to come, in your fine company.
Farokh, I'm so sorry and so sad to hear this news. I'm glad to have been a small part of your circle of life, and I thank you for the laughter we shared. Your attitude and good humour continue to make me smile.
I have no words to say. I think of you and how you have touched my life with joy laughter and wisdom. You have been in my thoughts a lot of late. I hope to speak to you soon.
I'd like to ask for a bargain. You prove the Doctor wrong and hang around to sign my casket when the time comes. I believe that you've come up with an excellent plan, and I'd like to "pilot test" it first. If it works quite well, you can use it next. (I don't have an appointment yet, so this process could take some time. I assume that you won't mind)? What color marker should I set aside for you?
I will try my best. Though it does not look too good. I may have to be the guinea pig and test the process for you. Green marker.
listening, crying and laughing in cape town while watching the twin grandbabies get their pristine colons used to the first ever intake of carrot and yoghurt..the circle of life viewed from end to end…hope to catchup with you and janet in toronto or on your next montreal jaunt before god claims us all back, one day or another…love you and love your exit moves farokh…after the blog/book? movie/dream rights?!!
You're Amazing. You are in my thoughts constantly. Going to give you both a big hug very soon.
I know this was a very tough entry to write while you were absorbing such devastating and disappointing news. you've done a phenomenal job of this one Farokh, gathering so many pieces, so many huge feelings, and landing them into coherency. thank you for your presence and for including so many of us in this terrible beauty of being real, whatever is going on. I look forward to our next visit and in the meantime, hold you in my thoughts and heart with tremendous tenderness. may you be buoyed by the love that surrounds you.
It was wonderful to see you again yesterday (even though you didn't share your Mars bar, it is OK, I will get over it!!!). I am thinking this is just a bad dream and the doctors are wrong (as always). See you soon my friend!
how wonderfully sensible, brave, thoughtful and funny you are farokh. i hope i have exactly your attitude in the face of such news.
i will try to get myself to toronto in time to give you a big hug…i remember how we laughed at the coffee shop at starbucks..frankly, i thought there would be more time…you are so brave …and i am sad…am crying my eyes out here…on the other side they must be anxious to have you..your mom and dad, my grandmother tajmah..i am sure they are looking forward to it, whilst the one's here will be missing you terribly, until we see each other again there…lots of love- roya
Farokh, I am so sorry and so is Harry who remembers you well. Your blog is heart-wrenching, fascinating, and funny – just like life. You have provided such a gift to all your followers with your wonderful photos and your insights. This is an important part of your legacy to the world. Thank you for using your precious energy to give this to us. Big hugs and much love. Anne
Dear Farokh your post made me cry, it truly is surreal. I try and think of myself in that position and imagination fails me. As you know John and I have just fought colo-rectal cancer together, he had the same side effects you described for the chemo. They were bad but not too intolerable (if you do go that route). But then again, chemo affects everybody differently. It is amazing what a difference metastasis makes to the prognosis. John goes for his final CAT scan soon and we expect it to be clear but once again cancer is such a squirrelly disease, you can never be certain. I sense that you might be erring on the side of nature taking it's course, and this is going to sound very, very flippant have you tried Tahibo (P'au Darco) tea? I got some for John from Herbie's Herbs on Queen St West (just east of Bathurst on the north side). I thought it couldn't hurt but he couldn't have it as I read online that it interferes with chemo. It comes with a 'snake oil' pamphlet about its medicinal fx against cancer (all blown up claims), but 'auntie Irene' who is about a billion years old (and from the Old Country) swears that it cured her and her daughter's lymphoma (her daughter's was untreatable with modern medicines for some reason). She bugged me and bugged me until I got John some. Anyway that's my 'peanut' of an idea – just channelling 'auntie Irene' who lives in my townhouse complex. Online they say that it's been properly clinically studied (and trialled) as an alternative to chemo, but in high doses (high enough for to be a chemo alternative) it has side effects. Anyway, that's enough hocus-pocus for today. Farokh I hope we can see you and Janet in the near future (once you stop reeling). If you're not too busy and feeling up to it. If there's anything we can do, let us know. Don't know what else to say except peace and wellness (whatever form that may come in) to the three of you….. and remember, it ain't over until it's over… cancer is a weird disease and you can't always predict its outcome…and there's still plenty of life in you yet my friend!
Farookh joonam, I love reading your writings and feel so close to you. how wonderful to let us share such privat and precisous feelings.
have you seen Renee Pasarow's talk about her near death experence. well that is how I imagine it to be , though I dont know how I would feel when my turn comes .hope I will be as real as you are. please be there to greet me upon my arrival. Abdu'lBaha says to look forward to death as we would to an upcoming exciting journey. like a bird freed from the cage. wow,how wonderful it must feel? yet how attached I am to this cage knowing it is my prison . see you soon here or there.
love you dearly
Your words are gold to the ones of us left behind. Even when you are gone you will continue to change those of us that struggle every day with remembering that life is short and that we must enjoy everything we have.
Farokh Jan,
I have Ron on the line with me as I write to you.
Shoushou told me yesterday.
She did not want me to hear it just like that.
I wanted to call Foad's but could not do it yesterday.
It was too new.
I called Foad tonight.
I can't stop the tears but I will by the morning.
I want to call you tomorrow if I may.
I will not upset you.
I promise.
It feels like yesterday Ron MSed your wedding and I made the dress for Janet.
I am sitting in the same house where I made the dress.
I want to say give my love to your Mom and Dad pretending that you are going on a journey.
But you are going on a journey and I want to say all my love until we meet again.
Some how this passing is harder for me to take than other loved ones.
It must be that I have a hard time seeing you of an age that brings with it time to pass on.
Having said it all I am still hopping and praying that you fool them all and stick around for a very long time.
You are in my heat and my prayers.
Ron sends you his love and prayers as well.
I have not told the boys as yet.
Shahla
you are so brave, Farokh and Janet
It's hard to imagine what it's like to look death in the eye, and yet you are doing so with such grace and honesty.
I'm looking forward to seeing both of you on sunday