Ivy's Diary, page 1
Joan Brown, a supportive co-worker inspired me to write this diary from the beginning of my ovarian stage IV cancer diagnosis in June, 1996. I balked saying I didn't want any memories of such an awful experience and such a trying time in my life. It wasn't until my sister-in-law Fern and my niece Leila went to Morocco and kept a journal that I decided it would be a good thing to have for later perusal to keep track of my thoughts. Duncan found crusting on my belly button in June, '96 at 10:30pm I took a cue-tip to my umbilicus, found it was bloody and had an odor. I immediately knew something was rotting in Denmark and called my primary care physician, Michael F. Zito, for whom I have worked as billing manager for many years. He was immediately alarmed
and instantly suspected ovarian cancer. I had swelling of the abdomen for about a month but because of a diet change from a low carbohydrate high protein to a high carbohydrate low protein food plan; I thought this was the reason I couldn't hold in my stomach. Without the crusting blood on my belly button, I doubt Dr. Zito or any doctor would have come up with an ovarian cancer diagnosis. Dr. Zito put me through every imaginable test all showing nothing. Dr. Caner biopsied my umbilicus and found metastasis, meaning the cancer on my belly button traveled there from some primary place in my body. The next step was to find out where it was coming from. Dr. Zito sent me to a lovely, young, handsome, personable surgeon named Michael Muto at the Brigham & Women's Hospital. He said a
complete hysterectomy was in store and he hoped to find as a result of the operation that I had ovarian cancer as opposed to any other kind, as ovarian responded best to chemotherapy. Dr. Muto didn't give me a lot of hope, nor did Dr. Zito, both citing my chances of survival at about 20%. - 1 in 5 - not very good odds. On July 1st, after a wonderful social weekend of a day celebrating Kristen Gaysunas' lovely garden wedding and a day at Cape Cod with our dear friends The Gieres, I entered Brigham & Women's Hospital for a rough week. My minister, Ginny Mason, came to the hospital and was the last face I remember seeing except for the middle-aged, male, kind anesthesiologist with bad breath, (the things you remember before going under!)
I felt as though I'd been run over by a truck when I woke up after the surgery, which Dr. Muto said went well. He found and removed 2 small tumors, 1 on each ovary and scraped away whatever visible cancer he could see with the naked eye. There was other cancer (microscopic cells that couldn't be seen) that would need to be treated with chemotherapy Passing gas after a hysterectomy is the main goal before a patient is allowed to go home. It is analogous to having an 8 pound baby with no anesthesia. I was in agony in the hospital until this happened and felt like setting off fireworks and raising the flag on the 4th of July when I did. Hallelujah! Duncan was by my side the entire time, suffering right along with me. He walked with me around the corridors as the nurses
said that was the only way to get the gas through one's system. I had a wonderful, sweet, caring Irish nurse named Margaret Powers who took wonderful care of me. I shall always be grateful to her for getting me though such a traumatic and difficult week in my life. Everyone has been unbelievably kind, supportive, caring and so loving toward me. It makes me cry every time I think of the phone calls, cards, prayers, letters, visits, encouragement and love I have been the recipient of since day one when I told everyone of my serious, horrible, frightening diagnosis. I have been up front with everyone, as it is my nature to be and have gotten an incredible honest, heartwarming response from casual acquaintances
to close family members. People I didn't know cared particularly about me showed me they did, and people I thought cared, suddenly said "I love you" to me, no doubt for fear they might not get another chance. Family and friends have been fabulous beyond description. I have a support system that has held me up from day 1 consisting of my immediate family: Duncan, my best friend and biggest fan, my right arm, my rock. What would I do without him? Courtney, my beloved, wonderful, beautiful, talented, sweet, loving daughter. The prospect of my impending death and the possibility that she may get ovarian cancer too someday has been particularly hard for her. I feel terrible that my illness has put a damper
on what should be the happiest time of her life - getting married to the man she loves - but there is nothing I can do about it. We have had to postpone her wedding date due to my health, since Dr. Zito does not think I will live until labor Day '97, (or perhaps be healthy enough to enjoy a wedding) when the nuptial was originally scheduled to take place at the Ogg summer cottage in Maine. We have put plans on hold until my condition stabilizes. A small, intimate family gathering is planned, the ceremony taking place in our Great Room at 155 Berkeley St. performed by my beloved brother Charlie. A luncheon at Mamma Marias in the North End is to follow with dancing later that evening and a brunch the next day for any who wished to participate. The young people will stay at a
hotel in Boston and can party until the wee hours. The brunch on Sunday at the Waltham Westin Hotel will provide a chance to meet Mark's large extended family. We are going this week to check out Mamma Maria's with Fern & Charlie, CWO and Mark. Mark, Courtney's fianc», is a lovely, kind man whom I fell in love with the first time we met. He is so good for Courtney, strong, stable, smart, accomplished, secure and wants only the best for her. I think it is a match made in heaven and I am delighted at the prospect of having such a fine young man as a son-in-law. He comes with very nice parents, who have devoted their lives to their kids, a great sister whom Courtney can relate to,
and a niece and nephew. Courtney is getting a ready made close family who have taken her to their bosom and who are delighted to have her, why wouldn't they be?? She is such a terrific addition to anything. I am so proud of her. She turned out to be such a great human being. I like to think I had something to do with that. She and Mark will have wonderful children. I just hope I live long enough to know them and hold them in my arms. I would never put pressure on my children to produce a grandchild before they were completely ready, however if I die before becoming a nana, it will be my only regret. My mother adored Courtney so much. I have always been sorry Matthew never knew her. God took my mother
from me in October, 1978, and God gave me Matthew in August 1979. One door closes and another one opens. The Lord giveth and The Lord taketh away. Matthew; I believe Matthew was a true "gift of God," which is what his name means. I wanted so desperately to have a son after our wonderful Courtney was born and in fact when I didn't get pregnant,(there's 8 years difference between their ages) I went to a doctor in Atlanta, Georgia, to get my tubes blown out so that I had a better chance of conceiving. I had poor Duncan wearing certain underwear and drinking certain things as well as running home to make love so that I would conceive a boy if my temperature was just right on a specific day. Laugh if you will
but it worked and on 08/05/79 I gave birth to a happy, healthy bouncing, beautiful boy 7lbs. 1 ounce. I was ecstatic! God had been good and given me exactly what I wanted, though I deeply regretted not being able to share the experience with my dear mother who had died from lung cancer less than a year earlier. Matthew has been giving me hugs and trying to deal with my serious diagnosis. It's been hard for him, as he is a sensitive boy, easily moved to tears. I am so glad that he can and does cry. I admire that in a man and think it's good for their sole. I know a grown man who doesn't think he can cry and this bothers him terribly. Matthew will never have to worry about that. I am so grateful
that Matt opens up to me and that we can and do cry together. I can't bear the thought of leaving him before he is fully-grown and either can he. He is a good boy, smart, happy, and excellent athlete (lacrosse, hockey and Golf star), friendly, outgoing and kind. Several lessons I hope my children have learned from me are: 1. The Golden Rule - "Do unto others as you would wish they would do unto you" - Treat others as you would wish to be treated - no matter how big or significant or how small or insignificant they are. Always be kind/compassionate, never rude. 2. "Leave a place as clean if not cleaner than (i.e. better than) the way you found it. "Try to improve on a situation. If life throws you a lemon, make lemonade!
3. "Don't put off until tomorrow what you can do today." This came directly form my father, Sam Nesson, who had these signs all over his office and who was the biggest procrastinator in the world! Things always seem to take longer than expected, so if you wait until the last minute to do something, very often you're screwed. Allow time for mistakes and or shit to happen! That's life and it does. 4. "march to your own drummer." Be true to yourself. Go with your gut feeling. Don't do anything against your principles. Set principles for yourself and stick to them. 5. Be honest. Don't lie. Be a trustworthy person. Always tell the truth and you'll never get caught in a lie. Be a person
of substance who can always be trusted. Don't cheat on yourself or others so that you can like and respect that person looking back at you in the mirror 6. My kids cringe whenever I say this but "Each to his own said the lady as she kissed the cow." Let people be and choose what they want in life. Everyone's different. What appeals or is right for you may not appeal to or be right for someone else. Live and let live. Do what you want in life and let them - spouse/kids do what they want providing of course it's a good thing and not harmful to anyone. It would be a boring sad world if we all liked the same persons/places/things. Vive la difference and Thank God.
I'm sure there will be other words of wisdom to share but right now that's all that comes to mind. Charlie and Fern: How blessed I am to have 2 outstanding, kind, brilliant, loving relatives always ready to help in any way possible. I have always adored by big brother, who has been looking out for me since I was born. Fern has added more depth and action to an already wonderful relationship I have always had with Charlie. They make a fabulous team, who zero in on whatever is a problem with wonderful suggestions, solutions and often action themselves. I know I am not alone through this horrible cancer ordeal. They are with me all the way, whenever I need them for whatever I need. This is an incredible feeling and brings me untold comfort. My
biggest fear is that I will not have control over my death. I look to Charlie and Fern to help me with that. Thank you, Thank you, wonderful, caring people that you are. Judy: my dear, sweet, worry wart, mother-earth friend who takes on the troubles of the world. I am sorry to be a burden and to add to her load, but it's her nature to worry so I suppose it might as well be me she's concerned about. Judy calls me regularly, sends cards and leaves loving, supportive messages on my telephone machine. She is my fan club, so eloquent with words, so faithful and supportive. Everyone should have a Judy in their lives. She is full of love and hugs for everyone and I am truly lucky to call her my best friend.
Lorraine; my friend since high school days who never changes. She has a heart of gold and shares herself and her love with so many in this world. I marvel at how she manages to fit everything and everyone into her life, which of course explains why she is always late! Cliff: Lorraine's devoted husband and friend from high school days as well, the salt of the earth and a perfect match. Cliff is a dear man, so dependable, a wonderful friend, hard worker and a man to be admired in every aspect of his life. Cliff is the type of man every mother wants her daughter to marry. Fran: what a tenacious friend who refuses to let go of me. She has given me great strength, encouragement and love with practically daily long-distance (California!) phone calls full of suggestions, advice and a great source of emotional support. With her psychological training I am able to vent my feelings. She and I go back to junior high days and she epitomizes the saying "There's nothing like old friend." 8/28/97 I re-read this diary today and though I would update it as per Courtney's suggestion. I am dying of ovarian cancer. It is growing bigger in my stomach so that I feel I am pregnant with a 9lb baby with no way to deliver it. The pressure is tremendous and very uncomfortable. I feel as though I'm going to explode. Because of the pressure there's no room for food, therefore I
have no appetite. I honestly wish I would die. I am ready to go. I have said my good-byes to many people and feel content. It is time. If I could, I would give myself an overdose of morphine or whatever medication would end my life. I would be out of pain. Unfortunately I don't have a Dr Kevorkian and I have no means of getting sufficient medicine to end my life so I will have to hope that God takes me soon in my sleep. I worry that I will go on for days in this condition. Ghandi lived for months, as did the girl with breast cancer Natalie Jacobson narrated a program on recently. Please God may the end be near. I am on a morphine drip, which stabilizes my blood. I choose to have enough morphine to
keep me from being in sharp pain but not enough to keep me in a stupor. I want to have my mind clear but the morphine doesn't take away the pressure. Unfortunately no doctor will give me enough morphine to end my life, though I wish they would. I guess I will have to wait for God to do that. God, please hurry. I am resting as comfortable as possible under the circumstances though the pressure is tremendous. Everyone has been so kind and caring. I am in the bosom of my family. My wonderful husband is at my side constantly attending to my every need. He is so solicitous. My sweet daughter Courtney comes to see me daily and carries out my every wish and idea.
S he is the feet and mouth I don't have because of the illness. I treasure this time we have together doing handiwork chatting and sharing our thoughts. I just finished knitting a sweater for Andrew Faria, one of the darling Giere grandchildren and hope the sweater will be passed among future Giere grandchildren not yet born as well as to Peter Giere as a symbol of a grandmother who was thinking about them. I'm also knitting a sweater for SHIM (she or him), my not yet born grandchildren. Nothing like planning ahead. I want Courtney and Matthew's kids to know I was thinking about them even though they never knew me.
Sally Cook, my brother's first wife who has been like a sister to me more than a sister-in law is my guardian angel. She is the most caring, gentle person I know and has been a godsend to me during this terrible cancer ordeal. Her psychiatric nursing background has been extremely helpful. She is always there for me when I need her. I can share anything with Sally and do. I trust her implicitly, her opinions and advice. I know that she loves me and I love her. My cyberspace brother Charlie is with me 100%, calling every day and visiting regularly. He and super wife Fern are setting up a fund with a terrific initial donation for Ovarian Cancer Women, for which I am very grateful.
My hope is that through research and whatever methods, in the future women with ovarian cancer will be detected before the cancer reaches stage IV so that their lives will be saved. By the time my cancer was discovered - stage IV - it was too late to save my life. All types of chemotherapy tried on me were unsuccessful. I was one of the unfortunate ones that didn't make it and lived only a year after diagnosis. Charlie has made the whole experience of setting up The Ivy Fund and getting on the Internet fun with his enthusiasm. We talk about it each time he comes to visit and he brings me progress reports. Courtney is very much in charge
and I hope my dear friends Judy Giere and Lorraine Gaysunas will be actively involved in my memory. They came to me months ago with a wish to do something in my memory. I feel this is the perfect solution. I would like other women who are diagnosed with ovarian cancer through information gotten over the Internet not to feel as alone as I did. I want these women to have access to as much ovarian cancer information as possible in order to make wise choices for their recovery and/or cure. I have had excellent medical attention given by my primary care physician, Dr. Michael Zito, who is an internist with a sub-specialty in oncology. I
have worked for Dr. Zito for may years and fell fortunate to have been not only his patient but his employee. He gave me personal daily attention from the very start and was available to me 24 hours a day. He along with surgeon Dr. Michael Muto and hematological oncologist specialist Dr. Ursula Matalonis consulted on what should be the next step for me each time a new solution was tried, hence I always felt as though I had several opinions before taking whatever course was decided upon. Unfortunately for me, nothing worked. Dr. Zito has kept in constant touch with me calling daily after I had to quit my job because the morphine was causing me
to fall asleep at the computer. He is most solicitous and I believe has done everything in his power to cure me without success. He is very interested and concerned about keeping me pain free, which except for the pressure pain he has. Chartwell has been very helpful. They call regularly with regard to my morphine supply and send home health care nurses to bathe me and change my bed. I am grateful for everyone's care and concern and am so grateful to be able to die at home in my own bed surrounded by my loved ones rather than in a sterile hospital surrounded by strangers. If you have to go, this is definitely the way to do it! I'm glad to see I am able to keep my sense of humor til the end!
My sister Bambi died suddenly in her sleep 2 years ago leaving no instructions behind for her family as to how or where she was to be buried. I vowed at the tie I wouldn't do that to my husband and kids so I have been planning my burial since then. I promptly bought a cemetery plot and have tried to leave clear instructions regarding my wishes, type of funeral, etc. There will be enough emotion confusion and unanswered questions when I die without the anticipated ones. Miss Efficiency till the end - I do like to be organized! 8/30/97 After a relatively peaceful night's sleep I am awake and grateful to have had a chance to say good-bye so peacefully
to my friends and family. My brother and nephew are coming to visit today and the morphine cassette is to be changed. I plan to increase the dosage of morphine so that I am not in pain from the pressure of the cancer. I pray that God takes me tonight. I am ready to go. Before I go, I'm picking out a video for Duncan and me (or is it Duncan and I?) to watch tonight. Wouldn't it be wonderful for me to fall asleep at bedtime and simply not wake up. this is my wish.
When I was diagnosed with cancer my fantastic brother Charlie wanted to spend regular time with me so we decided on weekly Thursday breakfasts at the Marriott Hotel in Newton. If Thursday's weren't convenient some weeks we did Wednesday s or Friday's, as long as we saw each other and touched bases. That was the important thing. Charlie has been wonderful about keeping in touch. I have never felt alone in this awful ordeal, greatly due to him. Breakfasts were fun. I like to wear outfits including hats and would often wear a wig with hat to give him a smile and to express myself. My mother loved hats and Charlie wears them too once in a while.
If I felt particularly chipper one morning I would look chipper. If I weren't feeling so well, I would dress casually and practically - for work at my job. We would talk about what was going on in each other's lives. It was wonderful knowing Charlie cared about what was going on in my mundane life compared to his fascinating one. We are from two different worlds, issue of the same mother and father but having nothing else in common except our profound love for one another. I have always felt so fortunate to have an older brother and wish one for every girl. I always knew if I needed anything, I could
turn to him and he would be there. Fern his wife has been wonderfully supportive too. She has great ideas and she writes checks very freely - most generous indeed. When Duncan lost his job several year back, Charlie and Fern gave me $5,000 to cover expenses and pay for items needed by the children. I kept a list of where this money went to show Fern and Charlie it wasn't spent frivolously. Thank God and Charlie for the check, which allowed us to carry on our life-style without interruption. Charlie and Fern have given me other checks as well when times have been tough. The have been so generous and I am so grateful. Thank you.
These last days with Courtney have been wonderful. We have done handiwork together, she needlepoint me knitting, and have had time to share our inner most thought and feelings. I had a wonderful relationship with my mother and have always wanted to have a similar one with my daughter. She is like me in many ways yet she is fiercely independent. She's always been her own person I know she will have a good life, and that she will make a fine wife and an excellent mother. She has all the makings and has been trained well. Mark will be a wonderful husband for Courtney, stable and loving. I know they will have a great family and a happy life. Courtney will miss me very, very much but I will live on in her heart, through my recipes and
teachings. It was wonderful today having a chance to say goodbye to my family. I am in pain from the pressure of the cancer against my stomach. I feel like I'm pregnant with a 9lb baby and want to give birth but can't. I will be so glad to feel relief in my belly. The morphine doesn't help much with pressure unfortunately. I am sorry not to say good-bye to my in-laws, Frances & Wilfred Ogg, in person. They came east this summer in July to Maine but unfortunately I wasn't well enough to travel to our beloved Bluff Cottage to be with them because of my health. I didn't want to be too far away from my doctor.
Fran & Will call regularly. They are so solicitous and caring. They have always been so supportive of me all my life. I have truly been blessed with great in-laws. They treat me like a daughter and always have been so generous to me financially my entire life. Frances has been writing checks to me for years and years, which get bigger both in size and amount as time goes by. She is so generous. No mater what we needed, Fran was there with a check with Wilfred right behind managing the accounting. Over the years he has handled Duncan's finances and through his astute expertise has made the nest eggs of all his children grow. Even after my terminal diagnosis Fran and Wilfred continued to give me
stocks and provided dividends to make my life easier, which indeed it did.
(Ivy passed away at 8:05 on a most beautiful sunny day, September 5th 1997.)
Stories from Ivy and her family