Janet Zink and her ovarian cancer support group collected these pearls of wisdom into what they call a patchbook.
Words create light and there are times when a phrase or quote can give you something you need; it can give perspecitve.
The patchbook's quotes and images have been sprinkled through our stories pages to provide a smile and a sense that laughter and hope are powerful medicines.
Thank you Janet and Friends.
This is a series of letters that were shared from a Mom to her
group of family, friends, and supporters.
Heather Seamans was 42 when she was diagnosed with ovarian cancer 2 1/2 years ago, just 3 months after genetic tests revealed she had Williams Syndrome, which explained her lifelong struggle with reading, writing and bike riding, as well as her gifted, perfect-pitch musical ability.
at 3:30 pm yesterday, we received devastating news. Heather has ovarian cancer, described as aggressive with tumors already in her abdomen.
Heather knows that she has a growth, a tumor and needs surgery; however, we are not using the "C" word. I can only discuss her condition on email, although phone calls are welcome but not to discuss her condition. She has big ears.
If you know anyone or anything about treatment for this cancer, please let me know as the info I got on the Internet last night is not good, recommending surgery and a low recovery rate.
The part of her life that we didn't share with you is that Heather has been in recovery for the past 4 years, after being molested in the hallway at Concord Housing. It was so mishandled and when they refused to move the pervert immediately, we brought her home to live with us. Her life collapsed -- her goal was independence, which she had living on her own 6 years, working at Papa Ginos four days a week, acting once a year in Open Door productions.
Since this summer, she was the old Heather, taking voice lessons, going to music camp, getting a solo in The Wiz. It seemed like her life (and my life) would return to its former baseline. I cannot adequately express my pain and rage for her. She is such a lovely person. We've been together since I was 19. Love, Ann
Susan, thank you so much for coming. I needed you more than I realized (even though I didn't get my roots done then or today). And John, Heather loves her card from you and your dog, Moxie. I will call in a minute but wanted to send my email update to everyone. Love, Ann
Thank you for your response for our request for help. In one weekend, we learned so much about ovarian cancer, "The Silent Killer," its treatment and statistics, enough so we could communicate with the doctors. Gildna Radnor's website is very informative.
On Tuesday, Heather was transported by ambulance from Emerson Hospital emergency room to ER at Brigham and Women's Hospital. On Friday, January 20, Heather was operated on. Her surgeon, Dr. Muto, called it a massive hysterectomy, taking all her female organs, her appendix and some little known thing called a diadem? They do not think the cancer spread to her lymphs, bowels, liver. The good news.
The tumor was really 2 tumors; 15 cms on both ovaries wrapped around each other so until they went in, they did not know what they were dealing with. She has an implant, so her chemotherapy will be the recent so-called "new ovarian" treatment, although it has been around and fell into disfavor for a while, but our surgeon gynecologist has done it for many years and is training others in it today. For him, we feel very lucky. He is kind and gentle with Heather and very knowledgeable. This therapy gives her an additional 16 months although it is very painful.
Heather is doing great -- she is so pain tolerant we have to remind her to push her morphine button -- walked twice yesterday, was disconnected from her IV today and hopes to have a grilled cheese sandwich with pickles tonight. She is very stoic and brave. We learn more on Tuesday about how long she will remain in hospital, her prognosis, and details about her treatment.
Thank you for all the cards and emails. She loves cards -- always opens them first on her birthday even when she was little. I sent out the wrong phone number on Thursday so am including the correct info . . .
I sleep with her in the hospital and Sid is usually there so not at home much. Also, when she is sleeping, we disconnect the phone in her room but will get back to you as soon as we can. I have not been home since Thursday, hence the email delay. Love, Ann
It's been almost a week since I emailed you.
We've had an up and down week. Heather is recovering well from the surgery, which they say was a Stage III not affecting liver, lymphs and other organs. On Tuesday her oncologist, Dr. Faulke, told her that she had cancer and needed chemotherapy. Heather had heard of cancer and told us that on TV she had heard "it was something that affected woman more than men."
Her doctor told her she would start chemo in 2 weeks and that her hair would fall out and she might feel sick. The next day Heather had blocked all this so it is an ongoing daily education for her; however, she came home on Wednesday, January 25, in good spirits and did well for 24 hours until she started vomiting on her phlegm so badly she couldn't breathe. At 2:30 am Friday morning we called 911 and the Bedford ambulance took her to Emerson hospital ER. (They couldn't go to Boston even though I had been talking to one of the doctors on her team who said to take her there.) She saw the same caring ER nurse that met her in December when everyone thought she had the flu with these same symptoms. She said Heather's illness is the most unfair she can imagine and found a nebulizer used for asthmatics for Heather to breathe through, which alleviated her phlegm immensely.
She stayed in Emerson yesterday until they had a bed for her at Brigham and Women's -- the same room and phone number as before. Amazingly, the interim occupant was the mother of one of the kids in Open Door Theatre, who knew it was Heather's room from all the phone calls.
They are keeping her until she can eat again without the vomiting and phlegm, which has reduced considerably without food. She is very sad and told me she "worked so hard to get better in her operation and now this." I'm afraid we have many days like this in front of us.
Thank you for all the wonderful cards, flowers and presents. I will get back to each of you individually soon, but they have meant so much to Heather. She loves all your thoughts and prayers and eagerly looks forward to the mail. Love, Ann
Its been almost 2 weeks since my last email. This is the first good day Heather has had in 10 days. She has been suffering terribly.
On Wednesday, February 1, in our room, they started Heather's chemo therapy. After 10 minutes and 5 cc, the nurse left for 1 or 2 minutes to take off her protective clothing. This alone tells you how toxic these chemicals are. As she left, I walked over to heather to give her a kiss goodnight and she said, "Mom, I feel strange." She started turning pink them lobster red all over her body. I said, "Oh, my God, Heather, you're turning red" (Calm nurse that I am) and ran around the bed to lean on the buzzer screaming for the nurse. She was right behind me with the antidote -- benadryl-- and pushed a button that filled the room immediately with medical personnel, taking temperature, vital signs, holding Heather's hand, telling her she would be ok. Erica, a PCA (I think means personal care assistant) who takes Heather's vital signs every 4 hours told us the next day that Heather was also saying, "I'm fine." I was frozen in the corner.
On Thursday they moved Heather to ICU to do a 12-step desensitization program, developed 2 years ago by Dr. Casals, an allergist, performed on 600 people to date by only 6 nurses trained in this procedure. It was amazing to watch this woman all night work with Heather as she fitfully slept. The idea is to slip the toxic medicines into her body before it realizes they are there. After 3 hours, they had introduced only 3 cc (10 minutes before had 5 ccs). She takes her vital signs every 15 minutes, checks her constantly with a flashlight. If Heather reacts at any stage they start over from that stage. Heather did great and in the last step for 2 hours they pour in the chemicals, completing this chemo at 6:00 am Friday.
Friday night they did the IP chemo through a port in her abdomen, the latest treatment for ovarian cancer that some of you read about and has been reported in the Globe, NY Times and New England Medical Journal. Heather's gyn surgeon has done it for years, although it fell out of favor for a while, but with new drugs has down well in 3 clinical trials. We now know why 60% of the women drop out and stay with traditional chemo even though this adds at least 16 months to whatever life expectancy they have with traditional means.
Heather has been in excruciating pain and vomiting since last Monday, losing weight and suffering as they try to get the pain management right. She has such a high pain threshold in surgery and daily life no one expected such and adverse reaction. We just couldn't write to you until today and last night, she has been nausea free for 24 hours and said her pain is between 2 and 6, not the highest 8-10. She is hungry, talking about onion dip when she gets home, Valentine's Day, who is having Christmas next year. Her spirit has returned.
They started feeding her food yesterday through another port she has in her shoulder that has 2 holes for needles introducing food, medicine, whatever, rather than puncture her poor little body so full of needle holes. She stopped eating Tuesday because of the nausea. Everyone agrees that the pain management and nausea management has to be in place before her next chemo. She's had great round the clock nursing care and superior doctors but this is tough stuff.
I stay with her on a chair in her room that makes into a bed this month except for 2 nights when Sid covered for me. It is so hard to watch your child go through this.
Heather is a floor favorite (She told me recently that people like her because she is gentle.) and when she walks around for exercise in her over sized blue bear feet with painted toenails that her cousin Karen gave her for Christmas, everyone says "Hi, Heather, how are you today?" I feel like we are in Mr. Rogers neighborhood.
And they exclaim over the fantastic cards that cover her closet. She loves them and has always opened her birthday cards before her presents, even when she was little. I can't believe how many and not one duplicate. Each day Sid arrives with the mail, I warn her that she probably won't get any today but there they are. Thank you so much. Love, Ann
Heather returned home on Thursday, February 16, two weeks ago, after a Valentine Party in her room with her doctor and nurse -- homemade raspberry Jell-O in a heart mold from bottled water (her request) and whipped cream that Sid managed to buy from Au Bon Pan downstairs.
Sitting in the living room, she was spiritless, exhausted, so thin, I thought "What have we done to her. These last four years have destroyed her body, her mind and now her spirit." Heather and I slept the next few nights for 6 and 4 hours straight after a month in the hospital where she was awakened every 2 hours for shots, vital signs, etc., and she started to return to herself.
Our goal is to fatten "Gretel up before her next chemo": She started eating, gained 4 pounds last week and our new routine began. Sid and I take turns cooking every other day, many meals 4-5 each day, after having early morning tea with Heather to discuss the menu, which she plans. She's chosen great things like shepherd's pie, chicken pot pie, pancakes, sitting upstairs in her own warm room while we run downstairs to the winter cold of this old house -- our own version of the PBS Upstairs, Downstairs series. Although today, I realized that my job may be in jeopardy after she asked me if the pancakes I was cooking were large or small. Luckily I got it right.
Her lovely spirit has returned, in large part from the amazing cards you've all sent in the mail, something she looks forward to each day at tea time and Sid puts up on her wall. And thank you so much for your prayers, calls and emails; your lovely presents -- stuffed animals, Valentine cards, candy, balloons. And the meals from my sister, MJ and Jean we gobbled up.
Open Door Theater has been so wonderful and supportive, sending many cards and presents -- both Sam and Barbara E. have visited twice -- and keeping a place open for Heather in the play. We'll know soon what happens.
Heather has her second chemo at Dana Farber on Thursday, March 9, in her shoulder port. She is not having the IP chemo in her abdomen this time as it was incredibly painful for a week last time (and this to someone with a high pain threshold who barely used her pain medicine after her operation). She is an inpatient just in case but hopefully we will be able to come home that day.
Heather is reluctantly and sadly losing her hair. I started cutting out the matted hair but she told me to stop so she has bald spots with matted hair. Very noncommittal about wigs. I grab anyone to talk to her -- a lovely woman in Dana Farber on Monday, who had beautiful hair 4 years after her chemo, kindly talked to Heather and emailed her Melissa Etheridge's song about her cancer. Heather loves her music, Cheryl Crow and Lance Armstrong -- we look for anyone to convince her she did nothing wrong to get this cancer.
The good news this week is that the CA125 chemical in the blood test for ovarian cancer was at 400 during the operation; on Monday the count was down to 22 and her surgeon had said that when she is in remission, they hope it would be in the teens so we are very grateful for this news.
And visits from Pastor John, Janice, Aunts Susan and Barbara, Uncles John and Dick, cousins Penny, Monica and Donna have cheered her enormously. Until her next chemo on Thursday, please call if you have a moment to spend with her. She gets tired fast so we have to schedule visits. Tomorrow she hopes to go to Sunday Fellowship and play practice on Tuesday. Love, Ann
Heather had her 2nd chemo on Friday. She was at Dana Farber as an outpatient from 7:00 am to 7:00 pm when they close. She did great, eating packages of Pepperidge Farm chunky cookies and peanut butter crackers, 2 breakfasts.
All 3 of her chemo nurses have been Jen -- what a coincidence. Heather makes friends with her nurses fast and many of them who are not always her nurse stop into say good-bye when they leave. She loves to sing and since her voice lessons with Nadia, bursts into song quite confidently. On Friday she was singing while she was getting chemo and her voice sounded scratchy and husky, which we both noticed. I told her she could sing like Rod Stewart and sang one of his songs in a way that I thought sounded like him. Heather said rather dismayed, "Really Mom, does he sound like that now?" I had to admit it was my interpretation and probably he sounded better than that. I also told her that her voice was a side effect of the chemo -- not many people sing Beatle songs during chemo, so no one mentioned your voice gets raspy.
Sid watched a rash the size of a quarter appear and disappear all day until she did have an allergic reaction at step 10 of the 12 desensitization steps when it spread extensively over her body. At that point they stop the chemo and give her benadryl, the antidote. Apparently, toxol, the toxic drug is harvested from the yew tree in the rainforest (the triage nurse told us this) and the preservatives are what gives the patients like Heather a reaction. One more reason among all the known and unknown to save the rainforests.
Once again her doctors and nurses were stellar and they offered Heather the option of stopping at step 10. She said "No, I want to get this over." And she made it with enough time to get the platinum for an hour, a chemical they added since she did not get the IP chemo in her belly this time.
We came home late; she ate Friday night and all day Saturday and we thought, "Wow. This time is so different." But this morning the nausea started and she sadly said, "They said there would be good days and bad days. I guess this is a bad day today."
We are trying to stay on top of the nausea with medication and she is still hungry, asking for her yummy coffee ensure frappe (she doesn't know about the ensure as she hated it in the hospital). I must admit it tastes good with tons of coffee ice cream. Friendly's fribble, look out. You've got competition.
I hope her appetite doesn't disappear like last time when she lost 12 pounds and I discovered the true meaning of loss of appetite -- Heather took bites out of a 2 cm oyster cracker. She also rejected all the hospital food, which was very good for hospital food, by saying "it isn't as good as Mom's." Apparently, chemo changes they way everything tastes into a metallic taste for the taste buds. I'm not surprised -- on Friday as they pumped her full of toxic chemicals, I asked the nurse if she didn't think Heather was starting to look yellow and metallic but she didn't see it.
So far she only had nausea for one day and has been nausea and pain free for 36 hours. A bit sad today when she showed me her tears "because of all she's been through."
2 chemos down; 4 to go. Love, Ann
Heather is responding well to her chemotherapy. She has had 3 treatments with 3 to go so she is halfway. We are planning fun things to do this summer.After 2 chemos, her CA125 count is 17, down from 400 at her operation. The normal range is anything below 25-30, according to her surgeon and varies by age and type of cancer. The experts feel she is doing extremely well and we are pleased that she now weighs 115, up from 104. She loses some weight during each chemo but loves to eat, which is very lucky. She still plans the meals so we eat her favorites.My sister Sandra and her husband, Evan, came for Easter and her twin Dana came the Friday before so Heather has now seen all her Aunts and Uncles and some of her cousins. Barry and June stopped by on Easter weekend from Maine. She enjoys visitors but takes a week after chemo to get her sparkle back. And she is busy gobbling Easter candy with no restrictions, for the first time in her life.March 17 Sid got shingles (originally diagnosed as sciatica ). As you may remember Heather was originally diagnosed in December with a viral infection so we have not had great luck with diagnostics this year. Sid was in much pain and couldn't go near Heather for a month. Now that he is a bit better, I am leaving for Scotland for a week with the Scottish tourist board. Heather will have her 4th chemo the day after I get back, May 4. She has energy and we've started doing fun outings. On Monday we went to the traditional pancake breakfast in Concord, MA, before the Patriots Day parade. A friend lent her a wheelchair, which works great, and we got home in time to watch the marathon, another tradition.On Sunday, we went to see her cousin Jillian, Jeb's daughter, in Nottingham, NH. She performed in Joseph and his Technicolor Dreamcoat, the same play Heather did last year in Open Door. She loved it as when she's in it, she doesn't see it and also like the difference in the staging of some of the songs. Heather's idea and a great day out. Spring is coming. Love, Ann
Happy Mothering Sunday. Heather reminded me that in London, Mother's Day was celebrated in March and called Mothering Sunday. We are having a great day with Sid cooking breakfast and Heather and I watching the opera, Carmen, at Glyndebourne on the Discovery channel. One of my fondest memories in London was Saturday when Sid watched the horse racing all morning, then Heather tuned the TV to opera in the afternoon.
Heather is doing great. She had her 4th chemo on May 4. While she had a reaction, the nurse stopped it in time and when she came home, although she is very perky the first day, we watched for the signs that nausea was imminent and gave her her medicine in time so she really rallied quickly. Her CA125 cancer count is down to 12 from 400 at her operation, and she weighed 120 going into chemo but is down to 112 now. We learn something new each time -- while Heather's hair is a soft fuzz as it starts to grow back, the visiting nurse told us that the chemo attacks all the fast growing cells like cancer cells but also hair and stomach cells, hence hair loss and gastro problems.
Another great piece of news is that her eye appointment this week showed that her keratoconus condition in her left eye, that might have involved cornea replacement, has stabilized. In fact her vision in her right eye tested better than last visit. We have been watching this condition for several years and are relieved to hear this news.
Heather's spirit is truly amazing. We can watch her daily gaining back her strength and energy. When she was diagnosed with ovarian cancer in January, I thought how unfair. How can this be after all she's been through since being sexually assaulted in Concord Housing. I was so afraid for her, fearing the worse physically and emotionally. But this whole experience has been cathartic for her. Not only is she fighting the cancer, but also her joyful, fun-loving self reemerges after 4 years of pain, isolation and depression on her solitary journey. We know it is her strength that is responsible for her survival, but also all the prayers and cards and presents and phone calls from you. No matter what happens to her, she feels loved and cared for and we will always be grateful. Her days are spent smiling, planning future trips and enjoying visits and mail from friends.
Of course, Heather being Heather, this morning at breakfast she said a prayer for Mima and Grandmother Ruth, asking God to take care of them wherever they are, and telling them she missed them and loved them. She then burst into tears. Her tribute to her grandmothers on Mothers Day. Love,26/06/06
Heather has her 6th and last chemo on Wednesday, June 28. Her 5th chemo tired her out for 10 days -- on the 4th day after her chemo she said, "Mom, I just have to accept that some days my body isn't going to work right." Her numbers were still good -- 15 up from 12 the month before but still considered below normal, which is in the 25-35 range. I guess we are on the cancer roller coaster, where she is monitored each month to see how she is doing.
She has been out and about this month enjoying life. Her Friday Night Fun Club came here for their end-of-year-picnic on June 10 with 33 parents and friends enjoying a dry day outside. Everyone marvelled at her energy.
The best day for Heather was Father's Day when she was baptized. Pastor John came to the house for a visit and after Heather had communion, Sid mentioned she had never been baptized. Pastor John asked Heather if she would like to be baptized and she said, "I've never been baptized before. I'd like to try it. It might be fun." It was a beautiful service with Heather's happy face and bald fuzzy head as soft as a baby's receiving baptism in front of the church. Our friend Gregory Maguire and his family surprised her by attending after Pastor John mentioned the forthcoming event to him on a bike ride in the neighborhood.
The West Concord Union Church has supported a youth group for Heather and her friends for 25 years. They are included in the Sunday service and never miss a chance to share their joys and concerns, many of them very relevant to current events.
In addition to all the thoughtful cards and gifts from friends and family, she has some beautiful memories from these past 6 months. In May 6th, Nancy Duggan, one of the Mom's in Open Door Theater, walked in Revlon's walk/run for women's cancer in New York City wearing Heather's name. She was sponsored by Sam Gould, director of The Wiz, this year -- a truly touching thing to do.
Heather's had fun with her Dad, fishing on Bear Island in Lake Winnepasaukee where her Auntie Dot and Uncle John live. She caught a bass but put it back as it is mating season. Then last week she drove to Errol, NH to fish with Sid, her Uncle Dick and cousin Charles. She caught 3 brown trout and with Sid's rainbow, we had a feast Friday night when they returned.
As she was getting ready for her fishing trip, I mentioned she needed to get her hat upstairs. She had been up and down several times but her response surprised me and suggested we were entering a new phase of her recovery. "Mom, I can't go upstairs and get it because I have cancer."
Life is better as we enter summer with regular meals rather than the 5-6 we were preparing this winter. Heather weighs 120-125 lbs., up from 103 when she returned home. And she has a wig, which looks very cute on her but she rarely wears. I've been trying to help her get it on right as well as creating eyebrows, which disappeared some time in May. Sid noticed and suggested that I draw some on her. I hardly wear makeup so not my forte but I tried. The first day her new eyebrows gave her a surprised look all day; the next ones were uneven on each side and now I've given up. Her cousin Penny said you can buy eyebrow templates.
Now she is anxious about her last chemo and staying close to home. One of her favorite singers, Melissa Etheridge, who also doesn't wear a wig, described chemo to Oprah as being close to death with your whole body in pain. Heather doesn't verbalize it like this but judging from her anxiety last time and this time, it's a horrible experience for her. We continue to be amazed at her good spirits most of the time. I've attached pictures of Heather with and without her wig in June. Love, Ann
Heather has had a great summer. Her last chemo was June 28th, she had her abdominal port taken out in August and she has been on the go since then -- 4th of July at cousin Paula's camp on Newfound Lake; KC and the Sunshine Band with cousins Monica and Penny; Williams Conference in Richmond where she was on the jobs panel; Unlimited Potential Music Camp in New York, which she loves; and finally her Aunt Sandra's 4oth wedding celebration in Pennsylvania in September.
We are off tomorrow for London for 2 weeks, an outing we promised her when she was very ill last winter. She is so excited to see her English friends for the first time in 3 years. Her friend, Angela, who has come for a visit every summer since we left London, is returning with us for two weeks.
We attribute her recovery, as she is now in remission with a clear cat scan and CA 125 at 18, to her hard work but also to your love and prayers. A true miracle as Heather is now the happiest she has been in 5 years. We are very grateful to Leslie Karp, her friend Stephanie's mother, for sponsoring Rick Moyer, a teacher at Wayland High School where Heather went to school, who rode in the Pan-Mass Challenge for cancer research.
In June 2008, Heather is enjoying her life, two years after completing chemotherapy for Ovarian Cancer, Stage III, three years away from that five-year, 20% survival statistic. We have our fingers crossed.
These emails and her words written on scraps of paper are the basis for her forthcoming book, Will You Remember Me?
Points to Consider if Your Physician Advises You Not to Pursue a Baseline CA-125 Test
-offered by Cynthia K. -
(One who has been there and is still here)
If your physician informs you that the CA-125 should not be run for any of the following reasons, you might consider the suggested response and questions. It is important for you and your doctor to be on the “same page”. They care about you and need to know what you are feeling on the inside as well as the outside. After all, you are a TEAM dedicated to the same goal...a long, healthy life for you!!!
1. “The CA-125 will not be covered by insurance as a screen”
THAT IS A PROBLEM and we need the help of the medical community to advocate for this. The minimal cost of a CA-125 test ($70-$110) is NOTHING to an insurance company compared to the extremely high cost of an advanced cancer diagnosis. The cost incurred by both the insurance company and the patient for a late stage diagnosis far exceeds that of an early diagnosis. So, if at all possible, why not catch it early, treat it properly, and save some lives?? That is after all, a common goal we share with our trusted physicians.
2. “The CA-125 gives false reassurance- a negative test is not a guarantee of no cancer”
Actually, this point is well taken. It is true that the CA-125 can give false negative and positive results. However, other routinely ordered medical tests (the PSA and mammogram to name a few) ALSO can give false positive or negative results. My own father was diligently monitored and went through a number of tests after receiving an abnormal PSA test taken during a routine physical. Thankfully, he was not presented with a cancer diagnosis. However, had it been a carcinoma, he would have been diagnosed as early as possible and would have been given a very hopeful prognosis. In addition, many women have been called back time and time again to repeat mammograms that had resulted in a suspicious or abnormal reading. As for myself and the many friends I have lost to Ovarian Cancer, NONE of us wanted to hear that we might have cancer but ALL of us would have been thankful to be given a test that could rule it out. Coincidentally, each of us received a diagnosis of Irritable Bowel Syndrome, a non-lethal problem. Though it may have been comforting at the time to receive this kind of diagnosis, it soon presented us all with quite painful emotional and physical suffering and ultimately, cost too many of these wonderful women...wives, daughters, sisters, and mothers their lives.
3. “The CA-125 is not the standard of care and is not recommended for screening”
Please, PLEASE remember that though a CA-125 may not work perfectly in every patient’s case, it DOES work for 30-50% of women tested (according to a prominent Milwaukee Gynecologic-Oncologist). If it works for you, that’s what matters. It worked for me (albeit late) and my dear friends that have passed away to name a few. If each healthy woman were given a CA-125 screening as part of their annual exam (or at least presented with the option of receiving the test), the baseline information could end up literally saving that patient’s life! If the results fall outside the norm of <35, then further testing should be done to RULE OUT the most LETHAL diagnosis FIRST. You should be diligently monitored, as you would be with an abnormal test result of any other kind. If in a month the number remains stable, then it would be comforting to know that your personal “norm” is above guidelines. It costs $70-$110 to confirm that. If however, the number jumps 20 or 30 more points , then you may indeed have a potentially serious problem. Maybe it is non-lethal and maybe it is not. Any woman who is concerned about her health and the implications for her future health would want to know that. We rely on our physicians to keep us healthy and certainly to be proactive in detecting any kind of threatening medical problem in any way possible. For now, the CA-125 is all we have to work with. True, it may not be perfect, but it DOES give very useful information that can be used to rule out worst case scenarios. We, as patients are not as scarred by false positive results (that thankfully lead to a confirmation of good health) as we are of life threatening diseases that are left undiagnosed until it is too late. We count on our physicians to match the “standard of care” to the needs of the patient. If need be, then we need our physicians to help us take a stand and change that standard of care!
My Journey with Ovarian Cancer -- A Very Personal "Long and Winding Road" by: Cynthia K.
Please allow me to introduce myself. My name is Cynthia. I am, in many ways, an ordinary (47) year old woman. I am a wife and proud mother of five wonderful children, ages 6, 8, 10, 12, and 14 years old. I am also a daughter, a sister, an aunt, and a friend. What is not ordinary about me is that I am fighting an enemy.
Now please allow me to introduce my enemy, Ovarian Cancer. It is the most deadly and most misdiagnosed of all gynecologic cancers. Often, as in my case, patients are misdiagnosed and treated for Irritable Bowel Syndrome. This personally cost me a three month delay to a correct diagnosis, and thereby allowed my cancer to reach an advanced stage. Eighty percent of Americans, mostly women, will be diagnosed with IBS (whose symptoms closely mimic ovarian cancer) at some point in their lives. Approximately 23,000 new cases of ovarian cancer will be diagnosed in 2005, according to the American Cancer Society. Ovarian cancer causes more deaths than any other cancer of the female reproductive system with an estimated 16,210 deaths expected in 2005. It occurs in one out of (55) women at any age.
My journey to where I am today really begins in October, 2000 at which point I underwent my annual physical examinations by my gynecologist. My gynecologist's only remark at the time was that I looked "a little tired". She said there would be only one other test (the CA-125, tumor marker test for ovarian cancer) that she could run but that would be if she suspected cancer. Of course, we weren't suspecting cancer and I proceeded with my busy life of full time special education teacher and mother of my (5) children, at the time ages 1, 3, 4, 5, and 7. Who wouldn't be "tired"!
In December, 2000 I began to feel some pain on my lower right side. I immediately saw my primary care doctor and underwent a series of tests that yielded no answers. I asked about the possibility of cancer, still no CA-125 test was run. The pain in my side increased and in addition, I developed severe back pain, bloating, bleeding, and sheer exhaustion, all prominent warning signs of ovarian cancer. I was put on heavy pain medications, and each time I called my doctor (19 times in January, 2001), my pain meds were increased. It was all I could do to get up in the morning, go to work, and fall into bed as soon as my husband got home. I no longer had any energy for parenting or household duties.
Finally, in February, 2001 I was sent to a gastrointestinal specialist for GI testing. I underwent a series of tests and a colonoscopy that the doctor could not complete due to "too much swelling in the abdomen". No follow up for the swelling was planned, other than being told I had Irritable Bowel Syndrome (IBS) and should change my diet. I promptly changed my diet but my pain and symptoms continued to increase. I had severe loss of appetite yet had been rapidly gaining weight, by this time (30) pounds over a two month span (all fluid in my abdomen and around my lung cavity). Even so, none of the doctors I had seen took this as a concern. By the end of the month, I was told I could not get any more pain meds. I had been on too high a dose for too long. I felt as though none of my complaints were being taken seriously. I had to do something and began to fear for my life. I saw a new doctor, who suggested that my pain might be a mental health issue.
On March 5, 2001 the pain was so severe that I could barely make it to work. I was in complete emotional and physical distress. I left work early and checked into the emergency room at St. Luke's Hospital in Milwaukee. There, within 24 hours, my primary care doctor was sitting on the end of my bed and calmly telling me that she was now treating me for ovarian cancer. All I could think of was "Your're WHAT?! After all these tests?!" I was shocked, angry, and scared for myself, my family, and most of all my husband and children. By the end of the week I had over (5) liters of fluid drained from my body and major surgery done to reveal that my cancer was stage IV and my CA-125 was over 1200 (normal is less than 35, the exact number is different for every woman.) Along with my advanced diagnosis, came a grim prognosis. I was told that I had a five percent chance of survival to the five year mark. I have since learned that I do not have to succumb to being a "statistic".
Next, the treatments began. Over the course of the past five years, I have endured a total of (24) cycles of chemotherapy, a stem cell transplant (Loyola University Medical Center - Chicago) that took me away from home for (2 1/2) months, and several surgeries, three in California. As a result of my treatment, I am profoundly deaf in my left ear and have a significant loss in my right ear. I also have partial numbness in my feet, wrists, and hands. In addition, my platelet and white blood cell count is low. Also, my family has incurred insurmountable debt related to my extensive medical treatment and a fund has been set up by friends to help us meet the high cost of fighting this cancer.
In the past few years, I have made and lost many dear friends to ovarian cancer. Our diagnosis bonded us and many of these women were young mothers of small children. We shared the same hopes and fears. We literally held hands through our struggles and treatments and worked hard to keep each other lifted up. And one more VERY IMPORTANT thing we shared: WE WERE ALL MISDIAGNOSED WITH IBS and lost precious time for early diagnosis and proper treatment.Out of this group of wonderful women (there were 6 of us), I am the lone survivor and am compelled to tell the story and spread a warning to other women who might be in for a misdiagnosis of this devastating disease. I have made a promise to each one of my friends to keep fighting, never give up and spread the word about our experience...and I know they are watching over me from above as I attempt to do just that.
Since finishing my most recent chemotherapy cycles this past May, my CA-125 has hovered around (8) or (9) what I consider to be my baseline. MY last reoccurrence was caught early. My CA-125 was only 22 but for me, that was too far above my baseline. I have my CA-125 test done every 30 days. With my diagnosis, waiting (3) or (6) months between testing could prove to be a fatal mistake. I also remember to thank God every day for the privilege of this life. My family and I have learned to not take anything for granted. This life is a gift and it is not a given. We are here for a reason and have to make the most of every day that we have. I want to encourage every woman to take an active role in her medical care. Ask questions and be persistent about getting answers. Take the time to listen to your body and know your personal baseline CA-125 level. It could save you life.
Cindy has written about what she has learned about CA-125 test in another piece. Please visit: ivysplace.org stories section to view.
Alice Rouff’s Story.
I had always gone for regular gynecological examinations and was being seen annually by an endocrinologist. In 1989, after having an ultrasound to check on an ovarian cyst, I was told that the cyst had grown.
I was advised to have a hysterectomy. I had the surgery on November 2, 1989. When I woke up after the procedure, I was informed that I had early stage Ovarian cancer.
The Doctors seemed very hopeful for my recovery because it was found relatively early, stage IIC. I was treated with six chemotherapy treatments, once every 3 weeks. The type of chemotherapy was Cisplatin and Cytoxin.
Life was good for two years until I was diagnosed with a recurrence in March 1992. I was not feeling well and went to several doctors including my internist, and a gastroenteroligist for a colonoscopy. I went for an abdominal Xray and was told I had a mass on my colon. The major symptom I had was abdominal swelling and severe pain. Every thing was normal just 3 months before. I didn’t know how I was going to get through this again, since I had been through it once before. It was a difficult time for me and my family. Fortunately we had a good medical team, support system from family, friends and an Ovarian Cancer support group.
In dealing with the recurrence, I decided to go for three separate opinions from gynecological oncologists. Although their opinions were all different, my decision was to operate first, (de-bulk) and then get at least 6 more chemotherapy treatments.
At that time, I had a ten inch tumor removed from on my colon. It was decided to use an experimental type of chemotherapy -inter-peritoneal bathing of the abdominal cavity with Carboplatin and Etopiside (VP16), once every 4 weeks. In order to do this inter-peritoneal bathing, during the de-bulking surgery, a tube was implanted in my abdomen that led to a port under my rib cage for the chemicals to be administered. Six treatments were recommended. The treatments were so effective that only four treatments were necessary. Six weeks after my last treatment I had day surgery to remove the tube and port. The side effects for this treatment were similar but were not as severe as the first set of treatments.
Because this was a new procedure in 1992, we had to argue with the insurance company to approve this treatment. My recommendation is that physicians assist in talking with the insurance companies, when necessary, in order to get the best treatment for the patient.
Because the recurrence came without any warning, I still see my gynecological oncologist every six months and get a blood test for ovarian cancer, a (CA125) every 3 months. So far so good.
On the subject of family history and genetics, my mother had breast cancer and died of brain cancer. Given that I am an Ashkanazi Jew I was concerned enough about these issues to undergo genetic testing. I underwent this test, not so much for my benefit, but for my Fraternal twin daughters and granddaughter’s benefit. It turns out that I do have the BRAC I gene.
When it was discovered that I had the BRAC I gene, the gene that is believed to be prevalent in Ovarian and breast cancer, the hematology- oncologist went through the various options that are available at this time. They started with:
1. Having a double mastectomy. (NOT AN OPTION to me). I believe in quality of life more than the quantity of life.
2. Stop taking hormone replacement therapy.
3. Get tested for breast cancer more often. Have a mammogram once a year and a breast MRI once a year. (Six months apart).
4. For women with ovaries, it is suggested that they have their ovaries, fallopian tubes and uterus removed after they have their children.
Additionally, it is believed that women who have the BRACA I gene are more susceptible to melanoma and colon cancer.
My name is Kendal Seidel. I am an ovarian cancer survivor. I was diagnosed with stage 3c ovarian cancer when I was 34, at which time I was told I had an approximate 50% chance to live out 5 years but I was encouraged to get my affairs in order as soon as possible. That was nearly 6 years ago. I have been in remission for 6 years (10/13/2006).
I was adopted as an infant. When I was 23, my biological sister found me after many years of searching for me, with the intention of communicating to me the large family history of ovarian cancer. I had been experiencing many female problems prior to her call. So many doctors had told me that what I felt were problems were in actuality “my normal”. Whatever was happening to my body continued to happen for many years…whether or not these problems were related to my eventual cancer diagnosis will never really be known. I had gone in for an exploratory laparoscopy in 2000 for what I was told was probable endometriosis. I woke up to the cancer diagnosis. I was determined to prove the doctors wrong, I wanted to beat the odds. My mom had always likened me to a Pit Bull, saying I had tenacity. This was not always meant to be a complement, but this same tenacity served me well following the diagnosis…
One year after my diagnosis, my other sister was diagnosed with stage 3c ovarian cancer. Her surgeon told her the disease was too advanced and that there was not much he could do. I pleaded with her and her husband to come to where I was, for a second opinion. I begged them not to give up. Thankfully they did get the second opinion, and while she has battled recurrence after recurrence, she is still with us and she is still fighting.
I began a online web group called ovarian cancer networking once I completed chemo in an effort to connect with other women going through the same thing as I had. My goal, my hope is to see to it that very woman has the knowledge she needs in order to be proactive in her healthcare. In light of the fact that there is no definitive test for ovarian cancer, the one thing we can do is share information. This is the one way we can extend tangible assistance to one another. This is one way we may save a life.
Thank you for letting me share my story with you! Thank you for your website, it is beautiful!
If it is a story you are looking for than it is a story I will give... On December 27th, 2001 Mary Murphy experienced her greatest honor of 58 years. She found herself surrounded by the very friends that made this possible on the corner of Montaup Street and Freedom Street in the proud town of Fall River, Massachusetts. She stepped off of the runner's shuttle with torch in hand and her great country in her heart. She stood in her moment of glory listening to her fellow Americans cheer for her, as her fellow torch bearer was ready to hand over the age old tradition. It was her time to carry this symbol for the proudest 2/10ths of a mile in her life. She began her run with the best of her energy and made sure she said hello to everyone. Her perfectly white ensemble gave her the accent she needed in order to look her best and that she did. At that moment, she was not focusing on her triumphs over ovarian cancer and all of the trials that went with that horrible time. She simply focused on each symbol of happiness waving back at her throughout her run. I remember her telling me "Sitting on that bus and listening to everyone’s story, I thought to myself, I only have cancer?” These people are amazing." Amazing was Mary coming around the final stretch of her run and seeing her mother "Janny" standing to give her a proud wave as to say "That's my girl!" Mary finished up her experience with the passing of the flame to another local hero and found herself surrounded by the best of friends and family. As I watched Mary smile for the cameras, she held her torch and the Stars and Stripes proudly on the street called "Freedom". I wiped the tears from my eyes and quietly whispered to myself... "That's my Mom".
Thank you for reading!
Hi I'm Kirsten, I'm a Pisces, I like long walks on the beach-oops wrong group. Hi I'm Kirsten and I just started High School. I'm really excited to be here with you and to be able to tell my story as a daughter of a Cancer survivor. I have an older brother Ted who just started college and a 10-year-old sister Danica-we love to argue about everything. What makes my story harder to tell is that I first experienced my mom's illness as a four year old. My brother Ted was 8-years-old and therefore much wiser. As you know, four year olds don't have a huge vocabulary nor are they very observant of what's happening around them. They focus on their favorite cartoons and stuffed animals. But because our family has had to deal with many cancer recurrences, I have learned a lot about life with cancer over these past ten years.
I can clearly recall that my family was getting excited about my mom having her third child. Mom seemed to be preoccupied with setting up a new room for the baby and getting everything ready. If someone asked my mom to describe me when I was four, she would say I was a spirited wild pony or moving thunder. The next thing I knew my mom and dad were missing and Grandma and Aunt Maggie were in our house watching my brother and I. They didn't seem so happy about the new baby news, everyone was crying including me. What I later realized was that the baby came home from the hospital but my mother didn't. My dad said that mom had something called cancer. She would be home soon but didn't feel well right now.
I was really mad. Where is she? Why did she have to have another baby anyway? She ruined everything. I remember being mad at her when she had a recurrence too. It isn't fair. No one else's mom has this. Why can't she just take a pill and fix herself. Is it my fault was I bad? I really didn't have anyone that understood how mad and sad and scared I was except for my brother Ted. When we wanted to talk privately we would usually go up to his room and have secret meetings to share what we thought of mom not being home and how we missed her. Ted tried to tell me he thought mom had something like a cold but little did he know it turned out to be an illness that would change our lives forever. This made him grow up fast. He wouldn't go out and leave my mom alone. He watched over me and he began to worry all the time. But he was a really good talker. He could relate to what I was thinking. All the scary things you could never tell your mom or dad because they might make things worse.
I thought the new baby had something to do with why mom hadn't come home and why everyone was crying. Ted told all the neighbors my mom had a baby and it gave her cancer. As each week went by I started to despise my newborn sister more and more. Two thoughts came to mind. One was that my new baby sister was only going to be at the house for a small period of time. As she continued to be there and was the center of attention I began to wonder why we couldn't take the baby back to wherever it came from and get my mom back. She was the one we really wanted. The other thing was, for many years I swore I would never get married and have a baby because I didn't want to lose all my hair and get cancer. I have gradually learned the two are only emotionally connected and not true.
Mom came home after a month in the hospital. However it didn't seem like she was home because she spent most of her time in bed. I will never complain about being tired after watching my mom go through chemotherapy so many times. It's exhausting to watch. I wanted to know where the mom who went shopping, got me dressed in the morning, played with me, and made my favorite meals had gone?
Instead of having my mom cook my meals I had close friends and neighbors from all over town bringing different home cooked meals. One neighbor made a list of what families would cook for us on a certain night. After a week or so, my brother and I figured out whose food we liked the best and we wanted to change the list so that they could cook for us every night. My aunts and grandmothers took us wherever we had to go and made sure we got to school. I was learning that no matter what I would be taken care of and loved. NO matter how difficult I could make things I would be cared for. I remember torturing my single aunt with fart noises, potty difficulties and letting her know often that she wasn't in charge, it was my house and my baby. As mom went through her many recurrences we would eat alone downstairs. We each got to take turns bringing some food up to mom. When it was my turn I was so excited to see my mom, but I couldn't help but think she was really a scary person because she had no hair on her head, looked skinny and pale and played with the remote control all the time. I thought she was contagious and I was afraid to touch her so I would never stand less than 5 feet away from her. I remember wishing and praying real hard that this would go away so we could be the same happy family again. I think I pray a lot more than I ever would have because of cancer. Even though she didn't look like my mom she still had her strong spirit. Eventually we learned to joke and laugh about a lot of things-one year she was bald Uncle Fester from the Addams family for Halloween. For Xmas we gave her a Santa hat with Chemo Sucks engraved on it. We developed a huge funny hat collection that we all wore all the time. People in town still call us the hat family. Mom's wig also came in handy for the Halloween scarecrow. She never wore it anyway. This experience has given us all a sense of humor.
My mom thought that it would be a good idea to go to art therapy with my brother to see if I could express my hidden feelings. I think there was some bad behavior as well she was worried about. Mom got more than she bargained for at times. After each session I would explain what I had drawn to my parents. One time I drew a picture of my family sitting at the kitchen table eating dinner except for my mom who I drew upstairs lying in her bed on a cloud. My mother asked what the picture meant. I told her that I was explaining to my art teacher what it was like at home. In my mind my mom was in her own world and was maybe on her way to heaven. Another picture I made was a face with a big tissue over the nose- I didn't want to catch the cancer. When I drew most of my pictures I drew Danica out of the family.
I had also made a list of all the things I would miss and all the places I would want to visit had she not become ill. I learned later, my mom was quite surprised that her four year old was speaking so plainly about how things would be as if she was not around. This made me later realize that I could help her to stay strong and keep her spirits high. If mom knew I was happy it would make her happy too. I would read to her, tell her about my day and give her lots of head and feet rubs and make her laugh.
Looking back over the past ten years I have grown a lot from being part of my mothers journey as a cancer survivor. Watching my mother get up and embrace each day these last ten years no matter how she felt has strengthen my spirit my mother has learned what the important things in life are all about. She has learned that spending time with her friends and especially her family is what matters most to her. I too have come to learn this. These memories will forever be there. I've learned that bad hair days are better then no hair days, that it's ok to be scared or to tell someone you're scared. I've learned talking and listening are both helpful whether it's cancer or just a bad high school day. I learned I will always have to be vigilant in my own health. As a family we have learned that one person can really make a difference by sharing their story as I am today. I learned that sometimes you have to make a lot of noise to raise awareness and monies to help fight this disease. I've learned that volunteering to help others on a similar path makes me and them feel good. I've learned a lot about cancer and what it can and cannot do. I've learned that my brother Ted and I share a really strong bond and that Danica is very special. One day she will need to be reminded it wasn't her fault. I've learned my dad can also be a great mom and that my mom not only knows how to survive but really knows how to live in spite of it all.
Sadly, this past year my mom has experienced a recurrence. We have looked upon this as yet another challenge to overcome. My mom is such a strong individual that she summons up strength to prepare herself for treatments. Somehow she manages to find additional energy to support each of us through our daily lives. The changed situation has made me realize that it isn't always about me. Now our family needs to work together in every aspect. Whether it is doing laundry, making dinner, or helping my sister with her homework it means I sometimes have to put aside my interests. But it's hard to express the incredible feelings I get when my mom is worrying about the laundry and I can say it is finished, or when my sister brings home a good grade on a test that I helped her study for.
Thank you for listening to my story and I hope it inspires you to look at your life in a new way and perhaps even share what you heard today with others.