MDMA in a couple struggling with cancer: Two years later

In the Autumn 1997 MAPS Bulletin, Sue and Shane wrote about the difficulties of dealing with his cancer and how they saved their relationship with the help of MDMA. In the account below, Sue writes about their continuing struggle. Shane passed away in October 1999.

August 7, 1999

Meeting Shane six years ago was a dream that fluttered into a nightmare state many times. I knew that I was in love, but the fears that we both faced since Shane was diagnosed with renal cell cancer in 1995 made

a constructive, blossoming relationship nearly impossible. In 1997, MDMA and proposed studies with cancer patients were brought to our attention by a good friend. After much research on our end, we decided to try it. I'm not exaggerating when I claim that it was the best event of our relationship and of our lives. It changed how we looked at life, how we looked at love and how we felt love. Our channels of communication opened fully and three years after this event, we still utilize the knowledge we gained that night. We were allowed to live a lifetime full of love in an evening. With Shane's cancer and the uncertainty of our time together, this was the most wonderful blessing. It allowed us to address issues involving his cancera formerly taboo subject with us, and to be able to learn to cope. We were allowed to learn how to open up to each other with such a painful subject coming between us. We have learned since we wrote in the MAPS Bulletin about our two MDMA sessions in 1997 that Shane's cancer has spread.

It has not only gone to his lungs, but is now in his brain along with the new tumor in his kidney area. He also has a golf ball-sized nodule on his neck. He went through an agonizing six weeks of radiation to his head trying to kill the tumor on his brain. The radiation succeeded in making his gorgeous mane of chestnut hair fall out.
As for the tumor we were attempting to evict from its new home, well it defied our direct orders to leave and decided it liked its location. Believe it or not, once it defied us and didn't leave, we decided that while it's there to stay, we're not only making the best of it and accepting it, we have named the tumor and made "friends" with it. If Shane ever has a time where he begins to babble incoherentlywe try to decide if it's the drugs he is on, or if it's "Steve" talking to us. Yes, we try to take this as good-naturedly as we can despite our fear.

My own health

Due to the circumstances of what Shane and I are going through, I have been to my breaking point and back quite a few times. I have friends who say that I'm handling the potential loss of the man I love more than life like a trooper. I have been called courageous. But I feel like a scared little girl inside that just has no choice but to survive and be brave. Having three kids who depend on my strength has brought me to where I will always be able to pick myself up and continue. God knows, there are days when I feel that I just can't do it anymore, days where the fear inside threatens to consume me and then spit me out. But I manage. When I lose Shane to the cancer, I am afraid of walking through life as a mere shell of a human.

Recently my doctor became concerned when he saw that I have been losing a lot of weight. He prescribed Paxil for me in addition to the Klonopin that he had already prescribed to me for the really taxing times where the stress gets unbearable. Researching Paxil on the Net scared me. The terms bi-polar and neurosis jumped off the screen and made me think that maybe, just maybe, I was worse off than I thought. Then Paxil was explained to me by a friend. Taking it daily has allowed me to breathe again. I still have a cloud over my head, but it's dissipating.

Poor prognosis

Our fears have been coming to a head lately. Shane's cancer is progressing and there is nothing that can be done to stop it. His doctor is now using the words "pain management" instead of treatment. Oh, how that hurts the both of us. He is no longer the vibrant, full of life man that I fell deeply in love with so many years ago. My love has grown for him tenfold since his conditioned has worsened. He has shown me a vulnerable side and I have gotten fiercely protective of him. This same man who used to put on his roller-blades and gripe at me to get off the computer to go blading with him, has a hard time getting up off the couch to do a simple task such as going to the bathroom. The man who used to have bulging muscles is now going through a wasting syndrome and getting bedsores from laying down constantly. His weight has dropped drastically and he takes 2200-calorie weight gainer drinks along with the drink Boost nightly to try to keep weight on. His belly is very bloated due to where they removed his cancerous kidney five years ago. There is a tumor replacing it that is bigger than the original kidney. It is pressing on his internal organs, causing the belly to be distended drastically. A standing joke is for me to hand him a bowl and have him go ask the neighbors for rice. Yes, his belly is that bad. Recently we have discovered that his remaining kidney is being affected and from this, he is retaining water so badly that his feet and ankles are swollen and he can no longer wear his once loose- fitting slippers. His ankles are almost as big as the bottom of my thigh.

Pain management

Blessed words indeed. For the longest time while he was still up and around, Shane was only taking Vicodin for the pain and was able to still be up on a roof 8 to 10 hours a day shingling (his job). Those days are a distant memory. The list of meds he is on is a long one:

1. MS Contin - 90 mg. taken twice daily - 12 hour intervals.
2. Roxanol-T - 1 mL taken every 3-4 hours for breakthough pain as needed.
3. Oxycodone - 5 mg taken every 3-4 hours for breakthrough pain. This is sometimes taken instead of the Roxanol if the pain isn't excessive.
4. Lasix - 40 mg taken twice a day to try to relieve some of the horrible water retention from the malfunctioning remaining kidney.
5. K-Dur - taken twice a day as a potassium supplement needed from taking the Lasix.
6. Restoril - 30 mg taken as needed for sleep. The morphine for some reason makes it difficult for him to sleep, so these are needed occasionally.
7. Vicodin - 5/500 - these aren't taken very often anymore due to the increase in pain, and they just aren't as good as the other things that he is on for pain management.

All of the medications that he is on have robbed him of a quality life, but allow him to manage the pain somewhat. He nods off regularlywe deem this the "Morphine Nods"he will be sitting there in a conversation and suddenly his head will drop to his chest and he's out for the count, momentarily. He snaps back out of it after a after a few moments only to do it again shortly there after. Have I mentioned that life is too short and to live it and love it to the fullest?

A third MDMA session?

Since there has been such a progression in his illness, we have been wanting to have another MDMA session. Luck has been with us and we have procured enough for a session for the both of us. We can now be open and talk about nearly anything, thanks to the sessions we had in 1997 and that we've adapted into everyday life. But there are still issues that are so painful that we don't want to talk about them. Funeral... life afterwards... last wishes... and I will admit, we are just plain greedy. We want one more night of barrier-free love and closeness. We want all walls of pain to be dropped if only for a night. To share what others write about in fairy tales and dream about in the most beautiful nights of slumber. When we had our second MDMA session in 1997, we walked to the field at the end of our street and lay in the grass watching the stars. I can't really describe how it felt, but to sum it up to the best of my ability, we were immortal. Cancer, death and anything bad had no place in our lives that night. No clouds over either of our heads. We felt like normal people. We have been coping with the cancer so long that it has become second nature to us and we don't think anything out of the ordinary of it. Oh, to be normal for a night. To feel love without fear, to feel life without pain.

Facing loss

WALKING hand-in-hand through life with your soul-mate... this is something that most only dare dream of. Finding that one person that knows you better than you know yourself, someone that you are positive was your destiny... I was one of the lucky ones. Walking through life anticipating losing your soul-mate is something that masks itself as a nightmare. I'm afraid of never waking up from this. I'm terrified of becoming a mere shell of a person, going through the motions of life without feeling... without daring to care again for fear of the pain coming back once I begin to heal.

I'm not afraid to admit that I'm bitter. I try not to be, but there are days that I can't help how I feel. I'm only human. But I am, I'm bitter because of what Shane and I are going through and the closeness that is going to be ripped from us in the not-so-distant future. I have days where I feel so much animosity towards others who are in relationships as they tell me how happy they are. I don't feel it's fair that I find the love of my life, and can't keep him for what society deems "forever." From this though, I'm able to tell people to love to the fullest extent of their capabilities. Life is too short.

I recall one incident where a woman that I work with and I were watching a movie one night at work, "Stepmom." She came up with the comment of "Can you imagine living your life knowing that you're going to die?" This thought actually floored her! I had to laugh inside because I live with this every minute of every day of my life. I have a cloud of death over my head due to Shane's cancer. I've discovered that the average person that hasn't been exposed to a terminal person seems to think that they are immortal. Death isn't an issue with most people. They shed a tear when they hear of a tragic incident, maybe they have lost a distant relative... but still seem to think that life goes on forever. I hate to tell them (so I don't) but life doesn't go on indefinitely. We are all mortal and will all be affected by the death of someone close to us eventually.

POSTSCRIPT
Shane passed away in his sleep October 2, 1999, with Sue holding his hand.