Monday, August 31, 2009
Years ago Wahid and I were talking and I said to him “You have never seemed to care what other people think of you.” He said ‘That is because I look at myself from the inside out, not the outside in.’
Stay focused on what is important.
Flashbacks From The Month Of August
August 11, 2002
*I would rate my body esteem a ‘3’. I have taken all of my cultures body messages to heart. I need to stop buying into society’s attitude and start buying into self-acceptance.
*I am not trying to stop time as far as my body goes. I spend no money and no time on keeping myself looking young.
August 21, 2002
*I do not covet other people’s lives.
August 13, 2003
*I do absolutely no exercise and I don’t feel connected to my own body. I need to add activities to my life.
August 4, 2004
*If I believed that I was feeding my soul and not just my body I would be more aware of what I am putting into it. I would never just jam my soul with just anything like I do with my body.
August 6, 2006
August 16, 2006
*Dr. Dubroska gave me the results of the CT scan. Good – great news. Cancer is no longer in the lungs. Cancer is no longer in the glands in the sternum. Improvement in bones everywhere, except Nodule 9 in the back. No change to the breast area and wondering if I should start radiation but she decided I needed to keep on the chemo instead.
Seems so funny to me now that I ever gave a shit about that crap.
What a huge waste. Invest your life energy on the people you love because in the end they are all that matter.
Friday, August 28, 2009
Thank you all for your love and compassion. Thank you all for your words. I am grateful now and I always will be.
The following was written by A. Powell Davies:
When sorrow comes, let us accept it simply, as a part of life.
Let the heart be open to pain; let it be stretched by it.
All the evidence we have says that this is the better way.
An open heart never grows bitter.
Or if it does, it cannot remain so.
In the desolate hour, there is an outcry; a clenching of the hands upon emptiness; a burning pain of bereavement; a weary ache of loss.
But anguish, like ecstasy, is not forever.
There comes a gentleness, a returning quietness, a restoring stillness.
This, too, is a door to life.
Here, also, is a deepening of meaning – and it can lead to dedication; a going forward to the triumph of the soul, the conquering of the wilderness. And in the process will come a deepening inward knowledge that in the final reckoning, all is well.
Wednesday, August 26, 2009
We listened as though our lives depended on it. We didn’t swallow in case it made noise.
A warrior and the warrior’s family were told of terrible things that were happening on the battlefield. The warrior did not avert his head nor did his family.
Sheldon had a CT scan on Friday the 21st so that they would have a good picture of what is going on before they start chemotherapy.
August 25th the results are in and we met with Dr. Wong for a family meeting at 4:30.
‘Sheldon, I am sorry.’
‘The tumors that were 2 ½ cm after your surgery have grown to over 12 ½ cm within one month.’
‘We do not believe that the chemo will work and it is no longer an option.’
I jump up to stand behind Jacquie’s wheelchair so that she could touch me and I could touch her. I can’t bear for her to continue hearing this alone, even though Sheldon, Ben, Gilbert, Mickey, Joey and Dr. Wong, as well as three other nurses and another doctor are also in the room.
‘The pain you are in is from the cancer pressing against nerves and the liver. Your blood is already showing signs of problems and your liver enzymes are elevated.’
‘We think that radiation may be the way to go so that it can shrink the tumor and you would be in less pain. Radiation could start tomorrow.’
‘You will be in palliative care.’
“How much time do I have?”
‘Do you really want to know that Sheldon?’
‘About two months.’
‘I’m sorry Sheldon.’
“That’s okay, thank you for your help.”
Joey is in the hallway crying. Mickey is in the chair in the hallway crying. Gord is in the chair in shock.
Charlton comes and I have someone to hold on to. I phone and let the family know.
Jacquie comes out and says she wants to go outside. Jacquie tells me that Sheldon wants to see everyone and that Angelique, Nadalene, Nathan and Wahid should come up right away. Gilbert and Mickey take Jacquie outside.
I go in and see Sheldon, I am crying and holding his hand and he tells me that it is okay.
“The dream I had was not a dream Auntie Renee, it was a premonition.”
‘Yes, Sheldon, it was a premonition.’
“It comforts me Auntie Renee.” ‘It comforts me too Sheldon.’
A few months after my father died at the end of September, Sheldon told his Mom of the dream he had and how it scared him so much he woke from his sleep.
Sheldon had a dream that he was sitting with my father on a bench and they were talking. All of a sudden Sheldon remembered that his grandpa was dead and said “Grandpa what are you doing here, you’re dead?” ‘I know I am Sheldon, but you are dead too.’
August 26th Sheldon is saying that he is not afraid to die. That he believes that there is more to this life. Sheldon tells me that he had so much fun last night with Ben, Angelique, Nadalene, Nathan, and Uncle Wahid. He said they laughed a lot at Ben telling stories.
He talked again about his premonition and knows that his grandpa is with him and is his guardian angel and that he will be there to meet him when he dies.
My father is a warrior from way-back and now that old warrior will one day be waiting to greet this young warrior.
I am counting on it.
Tuesday, August 25, 2009
‘Cancer – 50 Essential Things to Do’ is a book by Greg Anderson which I used as a guide to journal what I needed to work through in the immediate aftermath of being diagnosed with Stage 4 Inflammatory Breast Cancer in February, 2006. I finished the book before I started any treatment but it helped make me less afraid of what was going to be coming at me.
Quotes from the book will be in italics.
Discover Your Emotional Style (46):
My dominant style of expressing emotion is suppression. I restrain myself from venting real feelings. Denial is also my style where I push feelings out of my consciousness.
Review, release, and renew.
I choose to be hopeful.
Make Forgiveness A Habit (47):
Forgive and accept.
Nothing from the past is important enough to allow it to pollute our present.
Exude gratitude (48):
I am grateful just for being a part of this huge and wonderful world.
Today I am thankful that Wahid is on holidays and can be home with me. I am thankful for his company.
Practice Unconditional Loving (49):
You don’t fight fears, you replace it with loving.
*Loving is the first and last word in healing, the great balm that quiets distress, the only real ‘magic bullet’ against cancer, and the strongest vaccine to combat malignancy. Our greatest enemy is not disease but despair. Unconditional loving is the healer.
Share This Hope (50):
Angelique bought me this book and it was/is so helpful.
Survey On Cancer And Recovery (Appendix):
I have Inflammatory Breast Cancer. I was diagnosed on February 8, 2006. It has metastasized in the bone marrow and bones. It is a Stage 4 cancer. My recommended treatment is chemo once a week for three cycles and then one week of rest. Dr. Grenier is a board-certified oncologist. I get Herceptin once a week and Pamidronite once a month.
The most difficult part of the diagnosis was emotional. Thinking and being caught up in fear. All of the ‘what-ifs?’
The cancer diagnosis affected all of my family in more or less the same way. ‘What-if’ fear. My family has all been helpful. Their positive ness and pursuit of knowledge has made me more hopeful. Actually I am very positive. Seeing how my Dad has lived his life with all of his setbacks has been very encouraging.
My faith has only been strengthened by the cancer diagnosis. My faith will help me destroy the cancer in my body.
Besides medical doctors I am in the process of surrounding myself with a team of individuals who practice alternative therapies.
I do use alternative treatments. Any that come my way that sound interesting I will use.
I haven’t yet attended a cancer support group but I have placed my name forward to attend some. I also would like to get a mentor.
I don’t believe that cancer has affected the fundamental values by which I live my life. It has only intensified how precious life is to me. However, it has changed my ideas of nutrition and exercise.
My advice to anyone with a diagnosis of cancer is to look at things realistically and positively and to know that they are an individual and that no test and no person can tell them how long they will live. Look at the fear, than move on to the good because fear and ‘what-ifs’ paralyze you. Be positive. Live a great life. We have here and now. Life is amazing.
This book was incredibly helpful to me.
Monday, August 24, 2009
Baraqyal is an angel who belonged to the Grigori which refers to the angels that are the Watchers. The Watchers have been called ‘Those Who Watch’ or ‘Those Who Are Awake’ or ‘The Ones Who Never Sleep.’
Baraqyal descended from heaven to cohabit with mortal women. Baraqyal is listed among the 200 fallen angels and was ranked among the chief of ten. Baraqyal is said to look like a human male but taller. He never slips and is always silent.
Baraqyal is now considered a demon and is able to teach those who summon him the secret arts of astrology.
In Jewish lore it is said that there are good and evil watchers. Baraqyal is now considered an evil watcher and resides in the 3rd Heaven.
Bagalamukhi is one of the Mahavidyas which are the wisdom Goddesses. She is the Hindu Goddess of truth and deceit. She is also known for power and cruelty.
Bagalamukhi has the power to tell truth from lies and is able to stun liars into silence. With one hand she holds the tongue of a demon and in her other hand she holds a club with which she will silence the demon.
Bagalamukhi is called upon for success in stopping gossip and to undo the effects of black magic or the evil eye.
*artwork Baraqyal by Stefano Vitale
Saturday, August 22, 2009
Friday, August 21, 2009
Thursday, August 20, 2009
Did you do anything special at the end of your summer? No I have not done anything special for years during the summer. And at this very moment in the summer I am as irritated as I have ever been.
What was your favourite summer memory of ’09? My favourite summer memory from 2009 is that Domenic was born on July 12th which is Jacquie’s birthday. Domenic my very first grandson was born with lots of black hair.
Did you have a sunburn? I have not had a sunburn for years. The last time I got a sunburn was probably in 1980 when I was at Mayaro Beach in Trinidad. My skin burnt so bad that it was purple. Besides that, I get sick in the sun.
Did you go to the pool a lot? Not a lot but one of the best days was when Wahid and I took Josephine swimming at Jacquie’s and Grace and Luke were in and it was so much fun to watch Josephine swimming all over. Now when I go and Jacquie isn’t there it just makes me sad.
Wednesday, August 19, 2009
Olie was taught never to talk about the things that did not bring praise to the Lord. She was under the assumption that like Jesus, she too must sacrifice herself for the sins of the world.
Olie was the kind of girl that everyone said was a good girl. In fact, Olie was the kind of girl that you could do anything to and she would know never to speak of it.
Olie believed that one day she would be saved. Olie believed that with all of her heart.
Every day I hope that Olie will speak, that Olie will unlearn what she has been taught, that Olie will in fact talk, so that she will indeed be saved.
Tuesday, August 18, 2009
‘Cancer – 50 Essential Things to Do’ is a book by Greg Anderson which I used as a guide to journal what I needed to work through in the immediate aftermath of being diagnosed with Stage 4 Inflammatory Breast Cancer in February, 2006. I needed to think I knew how to keep my head on my shoulders during the incoming storm.
Quotes from the book will be in italics.
Live This Moment (38):
*Many people with a diagnosis of cancer needlessly pollute their lives by living in the past or in the future. Instead, I suggest our goal should be to live well with the only time we do have – this very precious moment.
Dad says ‘When what if comes knocking tell it to fuck-off.’
*The answer: present-moment living. All of our regrets about the past, no matter how sincere, won’t change history. All of our worries about the future won’t add even another minute to our lives. On the contrary, both fears and worries diminish our current minutes by detracting from our ability to enjoy them.
The future cannot harm us unless we create a future based on perceptions of fear, anger, and guilt. The only time that contains the power to change our lives is this present moment.
Take Time To Play (39):
If you think you’re tired, perhaps that is just the signal that you need more play. Play builds energy reserves and is a major contributor to wellness.
Stroll on the beach or near water.
Listen to music.
Go to a movie.
Laugh for Healing Power (40):
Laughter – internal jogging. Science has confirmed that even something as simple as a laugh or a smile carries with it a positive biochemical response.
The message is clear ‘Lighten Up.’
There is nothing wrong with being ill and pursuing a lighthearted approach to wellness.
Rent comedy videos.
Go to a comedy club.
Old fashioned laugh session.
Evaluate Your Relationships (41):
Toxic stress lowers our resistance.
Wahid, Angelique, Nadalene, Nathan, Mom, Dad, Jacquie, Colette, Shelly, Mickey, Suzie, Camille, and Natalie are the most important relationships I have. None of my relationships need to be put on hold. My relationship with these people is great.
The one thing I could do to make these relationships even better is to be authentic. State your mind. Hold in NO toxic stress.
Get Beyond Why (42):
Why? Why is just another way of saying we are helpless and the situation is beyond our control.
Affixing blame only creates helpless victims.
I am not a helpless victim.
Practice Self-Discipline (43):
No fast-food. Only eat nutritious meals. Exercise every day.
The practice of self-discipline leads to two very powerful life qualities – self respect and freedom.
See Life Through Spiritual Eyes (44):
In my life I can see beauty and grace, even perfection.
Dinner is a time where the minds, bodies, and souls of our family are gathered together to break bread and be nourished. The family’s lives are filled with potential for good. We are there to help each other, to love each other, to care for each other.
Spiritual eyes allow us to see the value of what is simple and readily available in our lives.
Value Personal Spiritual Growth (45):
Human beings, by changing their inner attitudes of mind, could change the outer aspects of their lives.
*Cynicism has no place here. You cannot climb up the spiritual mountain by thinking downhill thoughts.
And pray. Be still and prayerfully listen to God. Don’t beg or plead. Pray. ‘Thy will be done.’ Listen. Act. Remember with God, all things are possible.
One spiritual quality that I would like to make more vivid in my life is gentleness.
Monday, August 17, 2009
Ariel is one of the Archangels. Ariel means ‘Lion of God’ and is associated with the air and water. Ariel is the keeper of the sacred wisdom and is the angel of the earth.
Ariel is a protector of animals and is the great angel of new beginnings. Ariel ranks as one of the seven princes who ruled the waters. In the Bible the name Ariel can indicate a man, a city, and an altar. Ariel is considered to be one of the valiant angels as courage; focus, healing and awakening are some of his virtues.
Ariel is called one of the seven ‘Angels of Presence’ or ‘Angels of the Face’. As with many of the Archangels Ariel is considered to be one of the Guardian Angels.
Amaterasu Omikami is the Japanese Shinto sun Goddess whose name means ‘she who shines in the heavens.’ Amaterasu is the most important Goddess in the Shinto religion as she is said to have invented the cultivation of rice, silkworms and initiated the art of weaving.
Disgusted with her brother because of his violence, Amaterasu enclosed herself in a cave and refused to come out. The other deities gathered outside her self-made isolation and tried to lure her out with a loud celebration. Amaterasu overcome with curiosity emerged from the cave and seeing her radiance reflected in a mirror that had been set up outside the entrance was amazed at her own brilliance reflected back to her which she had never seen before. She decided to return to the world and life was renewed.
*artwork of Amaterasu by Sandra Stanton
Saturday, August 15, 2009
Friday, August 14, 2009
Friday, August 14th and I could gladly choke myself or kill someone. Times they are a-changing. Crack.
Jacquie is on the 5th floor while Sheldon is on the 7th. Angelique and Nadalene are visiting Sheldon upstairs and Mickey, Toni and I are visiting with Jacquie downstairs.
After a while Angelique, Nadalene, Joey and Sheldon come and join us in Jacquie’s room. It was such a nice evening and it almost felt like we were in my living room.
Sandy made Jacquie and Sheldon bottles of hope and Sheldon loves his. It is Hector the Mexican Cancer Fighting Bastard and Sheldon can even pull Hector’s head off. He loves it. Jacquie’s is quite pretty and she loves hers too.
Sheldon tells how it hurts him to know that he will not see his nephews and nieces grow up. I hope he does get to, wouldn’t that be amazing.
Suzie and Camille drop by and we talk and we talk. We talk about how Jacquie has drawn a line in the sand and wants to know directly what her family is willing to do for her and her son. Who will walk through the fire with them? And who will be the ones that can only cheer from the sidelines.
Jacquie has been told that she is making people feel guilty and that they can only do what they are able to do. She is told that she is pressuring people.
I say to Jacquie that she has every right to ask for what she wants. It is now or never for her. People constantly ask what they can do and mostly they want to hear ‘that you really can’t do anything.’ I tell Jacquie that no one has the right to shut her down. She is still able to ask for what she wants and if others think that is pressuring them or making them feel guilty or they are not able (when really the better word would be willing) that is on them and certainly not on her.
Fortunately for Jacquie many people are more than willing to walk with her and Sheldon. Camille who lives out of town will basically be living in town to help Jacquie and Sheldon get through this. Joey has been walking with Sheldon from the very beginning. Joey and Gord take turns sleeping over with Sheldon so that he does not have to be alone.
Many others are taking up many positions and it is truly the way it should be.
Sheldon, Jennifer and I go to the third floor so Sheldon can get a bone scan.
While with Jacquie I ask the nurse to get physio and occupational therapy to come and talk to us. I ask why Jacquie hasn’t been started on her physio and I say that occupational therapy should be up to help her get in a wheelchair so that she can have some freedom of movement. Jacquie has no motion on her left side so cannot stand or get out of bed to get in a chair. We need them to show us what we can do so that she can at least be strapped into the chair on the left side so that she doesn’t fall over or slide down the chair.
I go to cancer care to get my own treatment. When I arrive there I look like a total scrag and I see another patient that is getting chemo dressed to the nines in a beach outfit. Her outfit was all tropical flowers and she even had on shoes that made me do a double take. They were clear plastic on top and the soles were platform with flowers on them. Seriously, some people are meticulous and I look like I just got up off the floor where I slept all night.
Sheldon, Gord and I talk to the pain doctors and they tell us that the bone scan came back negative. Thank God for small mercies. Sheldon, however, is still in pain. They are readjusting everything.
Jacquie has her first radiation treatment and it took a long time to get her set up. She is in a lot of pain. I ask her if it was okay and she said that there was a four year old crying ahead of her that was getting radiation; and after seeing the little girl having to have it done, she had nothing to complain about. She felt devastated for the little girl.
Camille, Angelique, Jennifer and I are all with Jacquie having a great visit. Jacquie’s two grandchildren (Luke and Grace) are kissing Jacquie’s hands and lying all over her. It is so cute because after they kiss her hand; Jacquie tells them she feels much better and moves her fingers.
Sheldon phones me and wants another hair cut so I run him up the clippers and some clean pajama pants. He is in pain, has a lot of visitors, and Joey shaves his head and his beard. He looks very handsome after.
Josephine and Angelique come to Jacquie’s house to swim. Josephine keeps calling A.J. and wants A.J. to come out of the house. We tell her that she isn’t there and then she tries to get in the house through the patio doors calling A.J. Grace yells from the pool ‘Josephine my grandma is in the hospital where she is getting all better.’ Something inside me cracks a little more.
I just left the hospital and Jacquie is barfing her guts up in a pail and Suzie is cleaning it. Jacquie started radiation on Tuesday and started her chemo (in pill format) today. It hit her instantly and I wonder if her nerves aren’t playing a big part in how sick she is, as over the last few days she has been nauseated too. Maybe it is even the radiation. She says she feels to sick to go for the radiation. That won’t be good if she starts to miss the radiation.
I tell Jacquie that she can’t miss the radiation; she basically tells me to shut the fuck up. Nadalene says 'Mom how would you feel being nauseated with your head screwed down to a table?' I know, I know. I just don’t want her to miss her radiation.
Suzie tells me the nurse is giving her gravol and it isn’t working. I ask the nurse if the chemo pill could be doing this already and she replies ‘chemo can be very nasty.’ I reply then give her some kytril or pills specific for nausea with chemo, not just gravol as it is obviously not working.
Sheldon’s pain is not under control and the pain doctor talks to Sheldon, me and Jennifer and tells us that he has discussed the issue with palliative care because they know more about oncology pain; and they told them a different way to give him the medicine that might help him better. Crack.
There is to be another family meeting with the oncologist tomorrow at 11:00 a.m. for Sheldon. I’m assuming treatment will start Monday.
Camille, Angelique and I are in Jacquie’s kitchen and Camille is crying because she misses Jacquie being home. Camille is taking care of Jennifer’s kids so that frees Jennifer up to see her Mom. Camille says she keeps picturing Josephine trying to find A.J. We all start to cry because we want her back home. We know how Jacquie would be making us all tea and something to eat and insisting the barbeque be lit.
Ben calls to tell me his Mom said that she is not mad that I was yelling at her before about not missing radiation and that she did go. They gave her the kytril when Suzie and I left and she felt well enough to go for the radiation.
I started to cry and felt relieved. I told Ben to tell his Mom that I love her and together strong. He does. Crack. Jacquie and Sheldon are resilient and far stronger than they know.
Walking through the fire is when we face the most difficult challenges in our lives. We never look for it but eventually we all go through it. Some will have the courage to walk with us and others won’t.
I don’t know if how we perceive a situation is something we are born with or if it is a choice we make at some point along the way. But I do know that Jacquie walked the fire with me and I will walk the fire with her.
*artwork by Kelly Vivanco
Thursday, August 13, 2009
Wednesday, August 12, 2009
Tuesday, August 11, 2009
‘Cancer – 50 Essential Things to Do’ is a book by Greg Anderson which I used as a guide to journal what I needed to work through in the immediate aftermath of being diagnosed with Stage 4 Inflammatory Breast Cancer in February, 2006. I am grieving for my life at this point and trying to keep my head above water.
Quotes from the book will be in italics.
Practice Visualization (35):
Visualize the cancer disappearing and your body returning to health.
The most important criterion for picturing the disease is to think of the cancer as weak and confused. Don’t give it power.
Imagine your treatment as strong and powerful, damaging only the weak cancer cells. Imagine your healthy cells remaining intact.
Give your body the command to heal itself. End the imagery by seeing yourself well, free of disease, and filled with energy.
Self-direction is necessary to beginning the pursuit of any life goal.
*At first reality will lag behind the vision we have of the desired outcome. But that vision will tend to pull us in the direction we need to go.
- Evoke the relaxation response – The Lord is my Shepherd. Lord I am not worthy to receive you, only say the word and I will be healed.
- Picture your cancer cells as weak and confused.
- Create a mental image of your treatment and your immune system overcoming the cancer.
- Imagine your body’s natural processes eliminating the disease from your system.
- Envision the cancer shrinking until it disappears – my imagery is the cancer cells are crushed ice cubes with hot water being poured on them. They are dissolving rapidly and leaving my body. So long cancer – don’t come back as you are unwelcome.
- Imagine yourself well, filled with vitality for living.
*Daily evoke the relaxation response, follow it with a visualization exercise.
Minimize Treatment Side Effects (36):
When you see treatment as a friend, a more positive perception starts to work favourably with the treatment.
Understand the Message of Illness (37):
*Being diagnosed with breast cancer does not mean you have been handed a death sentence. What it does mean is that you have a serious problem for which you have many options.
I honestly think that the more you talk about it the easier it is to deal with it. In the beginning it’s really hard to say ‘I’ve got breast cancer.’ And you cry every time you say it. But the more you talk about it, the easier it gets. There’ll be times when you don’t want to talk or think about it, but trust me it gets easier.
Listen, listen, listen, and then ask strategic questions.
Your outlook on life is a direct reflection of how much you like yourself.
Life is full of setbacks. Success is determined by how you handle them.
You always have choice and the conscious brain can only hold one thought at a time. Choose a positive thought.
Stress is related to 99% of all illnesses.
Five things to do when your on your own are head to a bookstore; visit your parents; go to a spa; take a class; and or do a crossword puzzle.
Illness is more of a challenge than a threat. It can be a call for personal growth.
This is a turning point, a time to replace ineffective and limited ways of coping.
*Understand that if we have participated in our illness, then by definition, we can participate in our wellness.
Define your true needs.
Perhaps the greatest fear we have is that of the unknown. Cancer capitalizes on that fear.
Distress levels in spouses are as high as those in patients. Cancer is a family affair.
*Communicate your needs and don’t feel as though you have to soldier on. Cancer made it acceptable for me to turn and get help. That’s one of the privileges of the illness.
Thank you God! I love you!
Give yourself permission to define your true needs.
High-stress events that occurred in the year or two prior to diagnosis or recurrence included Mom was very ill and put on oxygen; money – working or not working; disappointment (30th anniversary); and a few others that I am not listing. I definitely can identify major stresses in my life prior to the onset of cancer.
My three major emotional responses to these high stress events were to swallow them and I did not express emotions; did not process how I felt at all; became depressed; put others needs before mine; pretended I was invincible and showed no emotions; and did not seek support from others.
My emotional self-care was ineffective.
I could have changed these circumstances by honouring my own emotional needs first; speak my mind; refuse to swallow family garbage, so that the family felt better; and I could have been more hopeful.
I could have changed my emotional response by processing the emotions and working through them opposed to swallowing and dismissing them.
There is no need to keep the peace/calm at any cost.
Sunday, August 9, 2009
Welcome all who are pure of heart and have loving intentions.
My home is like my heart. It is ever expanding.
Let's say grace. In the name of the Father, the Son, and the Holy Ghost. Thank you our Lord for these thy gifts which we are about to receive from the bounty of Christ our Lord Amen. In the name of the Father, the Son, and the Holy Ghost.
Josephine and Domenic it is time for your afternoon naps.
Up the down staircase.
The teapot is never empty.
There are many doorways leading in and out of my house; feel free to enter or leave. No one is hostage here.
Stay the night if you wish.
The priest is serving appetizers in the back.
The door to the fairies at the back of the house can only be opened if the child in you lives. (The image of the bas-relief doorway is taken from the Baptistry in the Florence Duomo, one of my dearest Lola's favorite churches.)
Choose the room you feel most comfortable in; know that everything is touchable.
Soup is always on.
All children are welcome. All children know the way to get in.
You will be heard here.
Abuse of any kind will not be tolerated here.
Friday, August 7, 2009
Thursday afternoon, August 6, 2009, there was a loud crack and I haven’t been able to hear or see since.
Chaos sat on his throne, shook his scepter in the air and cackled.
There is to be a family meeting, Sheldon’s results are in. Jacquie was brought to his room in her bed and Sheldon was opposite in his bed. Ben, Jennifer, Gil and I sat or stood around. Mickey and Joey are waiting in the room at the end of the hall.
The oncologist said:
‘Sheldon it is not good news, I’m afraid.’
‘There is only one person in the world who has the kind of tumor you have.’
‘We can offer chemo which would be quite intense, but even then we don’t have any knowledge of how to treat this.’
‘The cancer started where the esophagus meets the stomach.’
‘The chemo regiment would be five days on with you having chemo every three hours, 24 hours a day for five days and then two weeks off.’
‘In all of the literature there are only three articles on this type of cancer.’
‘The person who had this type of cancer died in surgery in Turkey and was not treated with chemo.’
‘You are the only person living in the world that we know of that has this type of cancer.’
‘We do not believe that you have had this cancer long.’
‘You still have tumors, as they were unable to remove them all during surgery.’
‘If you want chemo we will put in a port and start as soon as you heal from your surgery.’
‘I’m sorry Sheldon.’
‘Do you want me to treat you Sheldon?’ “Yes.”
The room has disappeared; there is only a black hole.
I hear questions.
Everyone is still here.
Ben and I leave the room and talk to the doctor.
During the evening Sheldon is in severe pain. I basically yell at the nurses to get their shit together and get him something.
Nathan tells Sheldon that the other guy is dead from it but Sheldon will be the one that lives with it. Sheldon is still in pain. Nathan basically yells at the nurse to not worry about Sheldon’s dressing on his neck but to get him something for pain.
Nadalene comes in with Jennifer. Sheldon is still in pain. Nadalene basically yells at the nurses to prioritize what they are doing and get him something for pain.
Sheldon is in agony, they finally give him something for pain.
We are all devastated. Sheldon is devastated. “How did this go from lymphoma to this? From the most curable to the one they can’t cure?”
People are trying to give him hope.
Sheldon can’t see that today, today he only knows that he will die.
I tell him that yes, he has been given a death sentence today, and today, he has that death sentence, but tomorrow; tomorrow there may be some light, but there just isn’t any today.
He wishes he would have just died in the operation and I tell him I am happy that he didn’t. I wasn’t ready to let him go then.
Sheldon asks if I would take the chemo. I said that I would. I tell him that we all want some time. We are just buying time. Time that we can have with the people we love. I tell him that at any point the chemo is too much he can always say that he doesn’t want it anymore.
I’m walking to the elevator and Ben is pushing Sheldon for a walk outside. I turn around and the three of us go outside; there is a little drizzle.
Sheldon tells me that he is okay today. That he is okay with everything. “I love you Auntie Renee.” ‘I love you too Sheldon.”
Sheldon said that when he was sleeping last night he woke up and Angelique and Ben were sitting in the room and he just had a peaceful feeling come over him and he felt that he would be okay. Whatever happens he would be okay.
I told him he will be and I am glad that he felt that way.
He reminded me of how I told him that when I accepted what was happening to me that I was able to get past it. That it did not control my world. He too was accepting it.
He accepts what is going on. He accepts that he will die sooner than later. He accepts that this is his life.
Sheldon wants to have lots of his family and friends around him. He wants the time he has to be happy and loving.
Ben and Sheldon and I are talking and Chrisy comes in and Sheldon was so happy to see her.
The social worker comes to talk to Sheldon and asks how he is doing? Sheldon tells her that they have the results and that no one else in the world has his type of cancer. That he will die and was given a death sentence but that he was okay with it. He tells her that he was very mad yesterday, but today he has accepted his fate and that he plans to live the rest of his life with the people he loves. The social worker is stunned by his attitude.
Dane comes in, and Sheldon is very happy to see him.
I go see Jacquie and stay with her; she is devastated, but she is also okay. She is happy that Sheldon is doing okay emotionally.
I admire Sheldon. I have always loved Sheldon; that goes without saying. But now I know what it really means to truly look up to a person, because, for the first time in my life I look up to someone.
Sheldon is 25 years old and has the heart of a lion.
And to chaos all I can say is ‘Fuck you. You have been beaten by a 25 year old man with the attitude of a God.’
Thursday, August 6, 2009
Wednesday, August 5, 2009
Tuesday, August 4, 2009
‘Cancer – 50 Essential Things to Do’ is a book by Greg Anderson which I used as a guide to journal what I needed to work through in the immediate aftermath of being diagnosed with Stage 4 Inflammatory Breast Cancer in February, 2006. I knew already that I cannot allow this to be a run-away horse.
Quotes from the book will be in italics.
Evaluate Your Self-Talk (32):
Fear does not overwhelm us without our consent.
*Self-talk is the ancestor of your current experience of illness and life.
Situation A – you are angry at the doctor for his arrogance, his impatience with your questions, and the limited amount of time e spends with you.
My positive self-talk: I am in control of my medical team and this doctor’s actions are unacceptable. Since I am not intimidated by the process I will let this doctor know, very clearly, that I expect my questions to be answered and that at my next appointment he may need to schedule more time as this is my life and I have a vested interest in it. I understand he may have many patients, but I need him or someone (nurse) he believes can speak for him to spend more time with me.
Situation B – It’s 3 a.m. and you’re wide awake, consumed with thoughts and fears of suffering and self-pity.
My positive self-talk: This is helping no one. It’s three in the morning and I need my sleep. I’m not suffering and when/or if I ever do, there will be lots of time for me to feel sorry for myself then. Fear is the mind killer and I have nothing to fear because God is with me.
Situation C – Your energy level is at an all-time low. You are tired and discouraged, questioning if you can take any more.
My positive self-talk: I will need to let my medical team know that I have no energy and I am feeling depressed. They can tell me what I need to boost my energy level and in the meantime I will make an appointment with the oncology psych worker to talk over how I am feeling. This is where my social support team will be needed.
My self-talk is positive.
Choose A Daily Affirmation (33):
Mom’s affirmation: In every day and every way I am feeling better.
Affirmations are consciously chosen self-talk.
I love life; this is my moment.
There is nothing in all the world I fear.
I am free from worry. I know peace.
The Lord is my Shepherd. I shall not want.
Manage Your Toxic Stress (34):
Toxic stress is emotional overload.
Stress works at cross-purposes to wellness.
Pick a phrase which triggers the relaxation response. ‘The Lord is my Shepherd.’
*artwork by my dear friend Lynne Hoppe
Monday, August 3, 2009
Zebra: Represents perfect balance, unity, harmony, and the attraction of opposites.
Zen: Symbolizes your quest for spiritual balance and harmony. You are at peace with yourself. artwork by Stefano Vitale
Zenith: When you stare up into the zenith you are seeing how limitless your potential is. It is telling you not to be afraid to push your limits in pursuit of your goals.
Zero: Always represents absolute freedom and super-consciousness. It is synonymous with the world card in the tarot. It is the symbol of the circle which stands for infinity and completeness.
Zig-Zag: Symbolizes indecision and erratic behaviour. You are being defensive and need to get your shit together.
Zinnias: Indicates laughter, joy, friendship and the importance of appreciation.
Zodiac: Represents the many aspects of a person’s conscious being. It is a reminder that you are connected to the universe.
Zombie: Symbolic with feeling out of touch, feeling dead inside and simply going through the motions. You are detached from people and situations and need to get yourself back in the game.
Zoo: Symbolizes loss of freedom. You feel caged in and underappreciated. There is chaos and confusion in your life and now it is time for you to break free.
Zoomorphism: Indicates that you are becoming less civilized and restrained and are becoming more free and instinctive. This is an important dream as you are being called on to rely on your intuition.
Sunday, August 2, 2009
I am beginning to believe in nothing. I know that if you pray hard enough you will never be answered. I know if you want something badly enough it will never happen. But I just can’t help it; I pray anyway.
After all; a sucker is born every day.
I may be wrong on the days of the week as time is just a jumble right now.
Mom is out of the hospital, she is feeling so much better and I am thankful.
Monday to Thursday
Mornings spent in the hospital with Sheldon. Nathan spends the afternoon and early evenings with him. Sheldon is super incredible; he is up walking and feeling good. He is hopeful that the worst is over and he will be on the road to recovery.
Sheldon makes me laugh everyday. The doctors love him, the nurses love him, our family loves him, I love him.
Hospitals are full of strange happenings.
I am waiting for an elevator on the 5th floor and a man in a hospital gown is walking up and down the hall with a cell phone in one hand, a catheter attached to his penis, and a pee bag in his other hand. He keeps swinging the phone hand and the pee bag hand which lifts up his gown and pulls on his catheter. All I can think is ‘give it up already.’
I wander from floor to floor in the hospital because I forget where I’m going half the time. Mom was on the 5th in three different rooms, Jacquie is on the 5th at a different hospital back in her original room with a pit stop in between. Sheldon was on the main, then the 4th and now the 7th where he has been in two different rooms.
There is an elderly woman at the end of the hall where she is walking every time I go. She has long grey hair and looks only a little older than me. I ask her if she remembers her room and she is not sure. I always get the nurse.
Monday to Thursday
Jacquie tells me the doctor came in and told her of the other biopsy. It is a Grade 4 tumor and it originated in the brain. It will not leave the brain. She will have radiation and chemotherapy by pill form and the tumor will grow again. It is located in the worst part of the brain where her movement is located. They do not feel that she will have her motor skills at all in the left side of her body.
Jacquie tells the doctor that she understands that this will be the end of her, but until it truly is the end she plans to live each day to the fullest until it is her last. ‘Now come in the picture I want to take a picture of you and I.’ He does and smiles for the camera.
Kayla comes to see her Grandma and sits with Jacquie; she too gets her picture taken with Jacquie and the doctor.
I am crying and Jacquie tells me over and over ‘Renee, it is fine. Seriously, it is what it is and I am fine with it.’ I tell her that she is fine with it, but I’m not.
Spend the evening with Jacquie. Angelique makes a Caesar salad that Jacquie wants and then Jacquie, Angelique, Nadalene, and Mickey and I have a little party.
It is pouring rain and Nathan and a friend pick up all of Sheldon’s furniture from his apartment as he will not be returning there after the hospital.
Go downstairs and almost have a shit-fit as I see furniture and stuff all over my main floor. Because Nathan couldn’t get into Jacquie’s he brought it home. It is now in my living room.
At 8 a.m. I yell down to Nathan ‘Why the fuck did you bring all of Sheldon’s shit here?’ He tells me he couldn’t get into Auntie Jacquie’s because the doors were locked.
Pete and Matt come and get the furniture in their trucks and take it to Jacquie’s.
Jacquie, Ben, Mickey and I have an appointment with Jacquie’s Radiation Oncologist at 1:30 at Cancer Care.
At 10 a.m. Ben phones and tells me he is rushing to St. Boniface to see Sheldon because of a phone call that Sheldon has an infection. He picks me up on his way.
The doctor tells us that Sheldon has an infection and will start antibiotics. His hemoglobin is down to 67 and he will need a transfusion.
I kiss Sheldon goodbye and we go to get Jacquie to take her to her appointment.
She is dressed and looks beautiful. She is ready for battle and knows what is ahead of her.
The Radiation Oncologist discusses her treatment. He says that Jacquie is young, bright, has a good memory and is very alert. He says that she may not get movement back in her left side. Jacquie says they don’t know who they are dealing with and she will get movement back, as a matter of fact she stood in physio five times the day before. (And will eventually show us all that she will stand again three more times when we take her back to her room. It is wonderful to see her standing upright again.) Also she has some movement in her left hand.
Jacquie will get fitted for a mask for radiation next week and will have 30 rounds of radiation. She will also start oral chemo and will be very tired. She wants to be drugged to the max as she is claustrophobic.
Jacquie is going to war and really doesn’t give a shit what they do to her, she is 100% focused on getting to Sheldon and helping him. That is Jacquie’s goal. I almost don’t give a shit either, I just want her to go and make Sheldon feel better.
To help Jacquie in her goal Ben and Joey are contacting people to get Jacquie transferred to St. Boniface. It works; she should be transferred early next week.
Jacquie is dressed up so instead of going back to her room we decide to go for lunch and we are all thinking comfort food.
Jacquie has a Sal’s nip and fries, Ben doesn’t eat, Mickey has fries and gravy and a piece of carrot cake and I have a salmon sandwich and crackers and humus. Ben is laughing that Auntie Mickey told the lady she didn’t want the piece she handed her, but a bigger piece with more icing. We all laugh at our eating habits and they say at least I am eating healthy; I have to come clean and pull out of both my left and right coat pockets two butter-tarts. We have an even better laugh.
Jacquie is back in her pajamas and in bed. Her favourite nurse has just helped her. His name is Carlo and he is a total doll. He told Jacquie that he admires her immensely and finds her strength incredible and that her attitude is amazing considering what is going on. He then asked if when she gets transferred if he would be able to come and visit her at St. Boniface. How incredibly nice some people are. Jacquie is the type of person who brings out the best in everyone.
Jacquie, Mickey and I are all talking. I am crying thinking of the whole fucked up day and Jacquie is rambling on about something. I don’t even know what Mickey is doing.
Then I hear Jacquie say ‘Yeah, I don’t even know what they are doing on Mars? How can they be on Mars for days when they can’t even get me across the city to St. Boniface? Who gives a shit if there is life on Mars?’
I awake from my stupor and say what are you talking about Mars for? As far as I am concerned the only thing I could give two shits for about Mars is if they can take you and me tomorrow and cut off our heads and stick them up our asses and feed them to Martians so that Sheldon could be cured. For some reason we all choke with laughter. See how tired we all are. Mickey and Jacquie are hysterical with laughter.
Driving home Mickey tells me how her and Gord saw at least a dozen sniffers on Main Street and how she wished the sniffers could die and we could live. I double that sentiment.
Nathan comes home from visiting Sheldon and says that he is getting more blood transfusions.
Nadalene goes to the hospital and stays with Sheldon till 1 a.m. Sheldon finally falls asleep.
I wake up almost every hour thinking and worrying about Sheldon. I am at the hospital at 7:30 a.m. Sheldon is cold and clammy. I keep getting him warm blankets. His tube in his throat keeps falling out. There are surgeons coming in and out all day. Sheldon is hurting and they need to increase the pain meds.
The hematologist comes in and says his blood is now at 77. They don’t know why it keeps going so low. They think it may be the infection. There are some bubbles in the tube, is it air or is it a leak?
Sheldon tells me about a letter his Mom wrote and read to him over the phone. It has made him happy. Jacquie tells me over the phone the letter she wrote to Sheldon and it makes her cry.
It is a hard day. A very hard day.
Angelique and Ben come, so I leave.
Not once, not even once have I ever asked ‘Why me?’ When people would ask me ‘Why you?’ I would say ‘Why not me?’
But this is too much.
Nadalene said that with A.J. and Sheldon being diagnosed with cancer within days of each other is like a person being struck by lightning.
There is no rhyme or reason there is only chaos. And chaos rules the day.