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Ovarian cancer: flipping my wig
By Karen Bonsignore I dislike my wig. It’s not that it doesn’t look good on me; on the contrary, it looks very much like my own hair. It’s just that it’s NOT my hair and it’s a constant reminder that I’m bald. When I wear it I feel dishonest, as if I’m trying to deceive people into believing that I actually have hair. Those who know me know that it’s a wig, and those who don’t know me rarely take notice at all. Instead I prefer to wear scarves or hats, which clearly state “I had cancer. I’m being treated and I’m bald.” Everyone knows that hair loss is one of the main side effects of chemotherapy. It’s expected. One of the things doctors sometimes forget to tell their patients is that it hurts when your hair falls out. A friend of mine who is a breast cancer survivor compared it to the uncomfortable feeling you have when, after wearing your hair in a certain style for many years, you decide to part your hair a different way. It even hurts to sleep on it. Most all of the hair on your body falls out due to the drugs, even your nose hair. Who knew? What surprised me most about losing my hair was how emotional I was about it. About two weeks after my first chemo treatment my hair started to fall out. Strands came out on my pillow, on my towel after showering and in my hands. I decided that I didn’t want to watch it fall out each day so I made an appointment to have it cut about an inch and a half from my scalp. While I sat in the chair at the salon I was taken aback when my chest began to clench and then tears streamed down my face and I had absolutely no idea why. I wasn’t sad about cutting my hair. In fact I’ve had relatively short hair most of my adult life. I’ve even had it “spiked” when it was in fashion. No, it was as if at that moment I’d been smacked hard with the reality that I actually had cancer and now I was really “in it.” It wasn’t simply that my hair was falling out; it was the terrible truth that my hair was falling out as a result of having ovarian cancer. I didn’t feel sick before I went into the hospital to remove what my doctors thought were benign cysts and I didn’t feel sick that day. I think that’s what made accepting cancer all the more difficult for me. There was no question now that I had it, they had “gotten it all,” and I was darn lucky. Before my second treatment three weeks later I’d cut my hair twice more: first to a #1 buzz cut, and then my son shaved my head bald. By that time I was resigned to the fact that this was part of the cancer package. There was no more denial. I wanted to live and I had no choice but to walk through it until I came out the other side. Editor's Note: Medical news is a popular but sensitive subject rooted in science. We receive many comments on this blog each day; not all are posted. Our hope is that much will be learned from the sharing of useful information and personal experiences based on the medical and health topics of the blog. We encourage you to focus your comments on those medical and health topics and we appreciate your input. Thank you for your participation.
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You are as strong as a pit bull, only without lipstick! I salute your courage for walking through this so openly and so boldly. Your are to be saluted for sharing such a personal experience with millions who suffer from or have a loved one suffering from Ovarian cancer. Keep posting!
By the way, your son is a pretty good photographer. I want his autograph before he becomes famous.
I am a close friend of Karen's and lucky to have her in my life. I love her with hair or without it. I think one of the positive things that cancer does is wake you up to what really matters in life. Hair is one thing that just doesn't matter. Seeing Karen bald as a result of chemo has been a blessing in disguise for me and I believe for a lot of other people as well. It makes us realize how important it is to appreciate life on a daily basis – take better care of ourselves – and educate others about the warning signs of cancer . Karen and other cancer warriors and their beautiful bald heads are helping save lives.
Karen,
Thanks for having the courage to share your story with us during this month for Ovarian Cancer Awareness. It is important to bring awareness to ovarian cancer and to all cancers. Congratulations on being a survivor and I look forward to reading more about your story.
Sincerely,
Mike Cracyraft
Testicular Cancer Society
thanks a lot for conveying your personal experiences and wearing of your wig. its really a courageous attempt that you have attempted to share your personal sufferings.
Arden Kaisman
Thank you for such a unique story and struggle of cancer. I also found a great research site regarding lung cancer and in particular mesothelioma. I have been seeing alot of advertisements on this cancer.
http://www.dailymesothelioma.com
I, too, am dealing with ovarian cancer. I had a routine hysterectomy in July, 2007 to eliminate what my doctor thought was "a cluster of fibroids". He found an ovarian tumor, the size of a small melon, that had invaded my intestine. I now have a colostomy that, hopefully, can be reversed in a couple years. I tolerated chemo. well, but did lose all of my hair. I hated wearing a wig, and opted for scarves and a favorite hat. Thankfully, by late June of this year, my hair grew back just enough to use a small curling iron; just in time for our son's wedding!:) My CA125 remains well within the normal range, at 17. I live life a day at a time, and try to stay as positive as possible. Thank you for sharing your experience! Take care.
Hi Karen! I'm a 2.5 year Ovarian Cancer SURVIVOR! I was diagnosed IIIA. I've walked the path you're traveling. I'm cancer-free! You can do this!!! Feel your feelings and please keep expressing them, and sharing them with us. Research shows that it's not just a happy optimistic attitude that promotes our healing, it's being authentic with the feelings we're experiencing.
I felt much the same way as you do about wigs. I went through 5 of them!!! Hated every one. I worried that they were catty-wampus, and they itched, and ooooo they were hot. I have 8 sisters and a number of girlfriends.
They couldn't bear the fact that they couldn't fix my diagnosis or change it. They felt so helpless. So I came up with an idea. I had them send me hats. The hats they sent were as different as each of them; beautiful, whimsical, warm, and bizarre. I will walk this walk with you my dear. I'll check in with you weekly. And should you decide you'd like to talk. Do feel free to email me. Blessings.
Laura
Madison, WI
Karen,
I was diagnosed in March with stage 3 ovarian cancer. I have an excellent chemotherapy nurse who told me my hair would hurt when it fell out. I completed my first 6 cycles of chemo and I am now starting maintenance treatments.
I am surprised at the number of women who lose their jobs and insurance and have to fight cancer alone.
Keep posting.
Mary
Karen:
I completely understand what you are going through. Your comments took me back to a time when my hair was falling out so bad that I decided to vaccum my head. I also tried standing in a wind storm, which really worked, but I was completely freaking out my brother who was visiting, so I stopped that. Finally, I was bald, not a hair anywhere, not even an eyelash. So I do understand, really. There are positives if you think about it. Showers are quicker-no shaving, minimal shampooing, and conditioner is useless. Getting dressed is made easier because if you don't wan't to wear makeup, so be it. No one is going to look at a chemo patient and make snide comments about the lack of foundation and blush. I tried wigs, hats, and even those hideous little turbans, but in the end, I just decided to go natural. I got some looks, but I didn't care, I finally felt free.
On a more serious note, Karen I am a survivor of ovarian cancer, 9 years in November. I was only 47 when I was diagnosed. It was an incidental finding on an MRI, and were it not for a very good radiologist, would have gone undetected. My cancer was ovarian clear cell carcinoma which has a very poor prognosis. At that time, women were given a course of 6 chemotherapy treatments. I told my oncologist the reason they gave only 6 was because any more than that, and the treatment would kill you.
I know what you are going through, and I know that you have a long journey. I just wanted you to know that there is always hope, and you can win this battle. I wish only the best for you and my prayers are with you.
Janet Wingo
Thank you for the courage to tell your story. I am reviewing the new early symptoms wondering how to get my doctor to give me the proper tests. Take care and GET WELL!
I just want to reach out and hug Karen. Thank you for your honesty and for so clearly portraying how denial and acceptance work hand in hand. I'm especially happy to hear that "they got it all". May you live a long and happy life and may you treasure your hair when it grows back. With my very best wishes.
Karen:
I too shaved my hair and hated wearing wigs. They were too darn hot so I wore baseball hats instead. And yes, you are so right....your head really HURTS when your hair falls out. No one told me that!
Wear that bald head as a proud symbol of survivorship. You will walk through all this, like I did and come out the other side a changed person.
I was VERY emotional during chemo. I swear those chemo drugs have something in them that made me cry at the drop of a hate and I consider myself a strong person.
Best wishes to you. Continue to write about your experiences. Knowledge is power to those starting treatment.
Hi Karen,
I am a cancer survivor myself and reading your post gave me chills. I was 32 and a single parent when diagnosed with non-Hodgkins lymphoma. I had no symptoms, I wasn't sick and was told they caught it early. After just 1 treatment my hair began to fall out and NO ONE around me understood. They tried to say the right thing and say it would grow back, which it did but I found no comfort in that.
The day it started to fall out was one of the worst days of my life. Alot of people don't understand that. It is so hard to explain. It is concrete evidence that life will never be the same. Even now, being in remission for almost 2 years, it still brings tears to my eyes. The cancer is gone but so was my hair.
I must say, I'd rather have no hair and no cancer. That puts things into prospective but still, it is a reminder of the pain. I count my blessings every day that I am cancer free. Some aren't so lucky.
I am a HUGE advocate for transission care. When treatment is done, the oncologists are done with you. No one helps you re-enter the world and help you adjust to life after cancer. I am not a big support group person so I just had to figure it out on my own.
I wish you all the best with your future without cancer.
Warm wishes,
Karly
NJ
Karen,
You are a courageous woman. Your story on this blog can help hundreds, if not thousands, of woman and their families in taking more control over lives in identifying this terrible disease at an earlier stage. There are too many similar stories to yours about victims only discovering they have ovarian cancer by accident because the symptoms are so difficult to diagnose. Good luck on your struggle and thank you for sharing your experience with others
Thank you for sharing your story! Even though I don't have cancer I am taking cancer type drugs for RA. I thought that was bad enough since hair thins out and was coming out in the brush. But just reading your story had me right back in the beauty chair when I got my waist length hair cut to1-2 inches with tears in my eyes. I'm just glad you have the ability to put your thoughts into words for the rest of us.
Thanks again and keep at it!
Thank you for sharing your personal story with others. May God bless you in your recovery. And, the beautiful thing about it, is that when you do, you can always grow new hair with your good health.
Thanks for sharing your story – I am 47 and was diagnosed stage IIIc in May of 2008 as well. This is my second brush with cancer as I am a seven year survivor of breast cancer as well. My prognosis was very grim at first as I was deemed inoperable in the initial diagnosis. I proceeded with neoadjuvant chemotherapy and my CA-125 dropped from 4500 to 178 in just 2 sessions. I have since had my surgery (with very little cancer found and no complications) and now am proceeding with weekly chemo to complete my treatment. My CA-125 is now 24. I have had an awful time with my blood counts and have had to both delay and reduce my drug dosage. I am now cautiously optimistic about my future. I wanted to share my story to give hope to women who are also given such a grim initial diagnosis.
I wholeheartedly agree!! As a cancer survivor I only wore wigs for a short time. There was enough physical discomfort without adding wigs to the mix. Scarves or caps were much more comfortable. I had often heard the term "even my hair hurts", but didn't understand what that meant until I started losing my hair. My hair, scaIp and head hurt. I also did a pre-emptive strike and cut my hair as short as possible so I would not go through the daily torment of watching my hair fall out. The most unusual thing happened when my hair grew back – it was CURLY. I mean tight curly. It was not a long-lasting change, tho.
I am 10 years cancer free. Early detection is our best defense.
Thank you for sharing your story.
Dear Karen:
I have breast cancer, and although I didn't have to have chemo, I did have a mastectomy the day after last Christmas. You are so right about not feeling sick when you're diagnosed – the first time I really felt that I was sick with cancer was when I woke up after my mastectomy. Just before my surgery I decided to cut my hair all off because I didn't want to bother with it anymore as I didn't know if I was going to have to have chemo or not. It is funny how those things seem to mean less after awhile. Courage Karen and thanks for sharing.
Karen, thank you for writing about your experience. In 2006, I was diagnosed with uterine cancer, after going three rounds of antibiotics for suspected infection (I knew in my gut that it was not an infection). Finally, I begged the doctor to test me for something else, since the drugs were not working. He did a biopsy ( OUCH!!) and found the cancer! That was a major surprise, as my family has practically no history of cancer of any type.
I had a full hysterectomy, and a round of both external and internal radiation. The radiation caused only a slight hair loss, and was not terribly invasive to my life. The gynocological oncologist told me, only under duress, that if I were to get cancer again, it would be in my lung.
The doctors assured me that I would not get cancer again.
Alas, this past winter a tumor was found in my lung in a chest xray to see if I had asthma. I am currently undergoing chemo for both the uterine type cells and the lung type cells, since we are not 100% sure which it is, the cells are very similar in nature. Mine is a stage IIIa.
My hair began to come out about two weeks after the first treatment, but not in bunches. It came out very slowly and did not hurt. I found it in the tub after washing my hair, and in my brush, sometimes on the towel. About three weeks later I did get it cut short, like Jamie Lee Curtis's hair. After that it was much less distasteful to lose it. I still have little tufts of it on my head and still have eyelashes and brows, and much of my other body hair. A lot of what is left is white or lighter.
My family and friends have been so supportive through it all. My children's way of coping with illness was imagining ways they would decorate my bald head! They would paint henna designs, glue on sequins, attach ponytails of their own hair, etc etc we all had big laughs and much less stress.
I did buy a wig, which looks very nice on me, but I don't like to wear it. I can't explain why, I guess because it isn't attached, i.e. mine!. I mostly wear scarves, and little kerchief type hats I have made. Even those make me hot, and at home I remove them often. My family's various friends have become accustomed to seeing me au natural.
I have no idea what my prognosis for the future is. A couple of the lymph nodes did have cells, so it could go either way. I think if I ever go through this again, I may decide to go natural all the time.
I wish you the best throughout your treatment, and for your future. thanks again for sharing your story and your feelings.
Karen,
I was diagnosed with IIIC ovarian cancer in October, 2006. My oncologist was pretty forthcoming about all the side effects I would be facing. I thought that losing my hair wouldn't be a big deal (until the day it started to happen!!) When it did start to fall out I did the same thing you did, cut my hair VERY short. Then 5 days later I had my head shaved. It wasn't so much about the baldness ( I was worried that my head would be ugly) but about facing the fact that the diagnosis was real. I was surprised that my head hurt too! I opted for doo rags and all my friends began collecting for me. During Easter of 2007 every one took erasable markers and decorated my head like an easter egg!!!!
Just keep a positive outlook! I have been very blessed to find lots of silver linings in my cancer cloud. Just keep walking through it and look for all the little and big blessings along the way.
You can win this battle. My prayers are with you.
Kathy
Texas
Karen:
Your story sound much like my mother's, she was diagnosed with Ovarian Cancer on March 2007. I would see her come out of the bathroom with tears in her eyes once her hair started to fall out. All I could do was hug her and tell her that she's not alone and I would cry with her. It was only after she finished her chemo treatments that she told me that her head hurt so bad from her hair falling out but she didn't want to say anything because she knew we were all suffering and she didn't want to cause us any more pain or worries. She's such a strong woman and I love her so much. I felt so bad that I didn't know that besides everything else she was going through, her head hurt so bad from her hair falling out. This is not fair to all you strong women. I pray everyday for all of you that have been touched by ovarian cancer.
My prayers are with you. I wish you a speedy recovery
I want to take this opportunity to thank you for sharing your story with us and for bringing awareness to this terrible disease. Ovarian Cancer needs more attention than it currently gets. Some many strong women are battling with this disease and more needs to be done to raise awareness and funds to increase the survival rates and for better treatments. God bless you and all the women who are fighting again OVC. Let's help find the cure !!!!! I truly do admire you..
Karen:
Thanks for sharing your story. You are a brave woman making a difference in our lives by showing us your courage and strength. I admire your will and I will continue to pray for you for complete healing.
Blessings
Lisa
I was diagnosed with ovarian cancer in June 2007. When my hair began falling out I thought I was ready to shave my head. When the girl began cutting my hair, I began to bawl. I knew it was only hair and that it would grow back, but it wasn't about the hair, it was about having cancer and looking like I had cancer. It was the look that I would be reminded of every time I looked in the mirror. Now that my hair is growing back I am wearing it short and having a lot of fun with it.
Thank you for sharing your story with us. Keep up the fight and I will add you to my prayer list.
Debbie
Debbie
Hey Karen,
You hang in there !!! This month marks my 9th year as a survivor of Ovarian cancer. I was first diagnosed in 1999...had surgery and six rounds of chemo. I was then declared "cancer free" for five and a half years. In 2005, it came back and I had to start all over again.
As far as the hair thing.....I always tell people that the day I really lost most of my hair was one of the most emotional days of my life. Up until that time, I really did deny that I had it because I didn't feel bad and didn't look sick but when you have to look at yourself in the mirror every morning, there's no denying it then. You HAVE to deal with it.
I wear ball caps....my friends thought of sayings to put on them.
I have "Chemo Champ", "Bad Hair Day", "NO Hair Day" and, of course my favorite – "Cancer Sucks"....You have to maintain a sense of humor !
Stay strong and keep the positive attitude....It works miracles.
Kathi
My hair didn't survive but I am surviving!!! There are beautiful scarfs at an internet site called "Anokhi". Better than my beautiful wig. Feel like a movie star with suglasses and a beautiful head piece. Have fun = life may be shorter than we think!
Thank you for this blog. I share everyone's frustration at how little is known about ovarian cancer and how much awareness there is for breast cancer.
My mom was was diagnosed with Stage III ovarian cancer 5 months ago, she is currently undergoing chemo and her CA-125 is down to 29. It is so hard reading all of these stories of women that passed away after only a few short years, but we are trying to stay positive and take things one day at a time.
I also worry for myself and my OB has been reluctant to run a CA-125 blood test and a transvaginal ultrasound on me because of the high false positive rate. After reading all of these posts though I'm going to push for it. If he won't test me I will find a doctor who will.
I am a 25 month, three week SURVIVOR of Stage 4 inoperable ovarian cancer. (Always capitalize the word SURVIVOR.) This Wednesday, I will undergo my 73rd chemo session. When I first began losing my hair in September 2006, I called my two grandsons (then 14 and 11), and we had a hair cutting "ceremony"–took photos, etc. One grandson shaved one side, and the other shaved the other side of my head. They got to see me bald first and weren't scared of me. The second time my hair began coming out in clumps, my daughter did the head shaving–commenting she didn't get to participate in the first ceremony. It had never occurred to me that she would have wanted to have participated in the first ceremony. I have been bald for over a year this time, and don't miss the fact that I have to spend money on gel, etc. and the extra 20 minutes it took to do my hair each morning. Hate wigs–much too hot and itchy. I have bunches of hats and caps–bright, bold, gaudy, sparkly, you name it–I have one. I can match any outfit I wear with a hat/cap. I figure if I have to be bald, I might as well be bold. Friends and family have showered me with hats and caps.
I highly recommend that when "hair loss" time comes to call in children or grandchildren and make a ceremony out of the head shaving. You will be pleasantly surprised that they will really want to do it. I am not at all uncomfortable not even wearing a cap/hat. I figure if anyone objects to my bald head, he/she has a problem and not worthy of my concern. I am just thankful to be alive and losing my hair hasn't been a concern to me. I also have not had to shave arms or legs for over a year now!
I am a survivor of ovarian and I lost all my hair as well but it has not grown back fully ,,, it's splotchy and thinner than it used to be has anyone experienced this .. it has been two years
i really appreciate you sharing your struggle with all of us . m sure it will give a lot of encouragement to the other patients going through chemotherapy.
http://www.mesothelioma-aid.org
IN HIGH SCHOOL , KAREN HAD GREAT CHARACTER--THAT HAS'NT CHANGED
I just like the approach you took with this article. It's not often that you just find a subject so to the point and enlightening.