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Category Archives: choosing to have a mastectomy

SUZY- Gone Way Too Soon

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During a time when love is being celebrated by so many couples, I have a beloved friend who will be laid to rest today. It’s just not fair Suzy had to leave this world way too young. It goes without saying she left us long before it was her time.

I’m pissed off that 28 years after my mother died, women…wonderful women like Suzy are still dying from the same disease in the same cruel way. How dare this continue happening. My mother (along with many others) paid the ultimate price so women like Suzy would be spared. It sickens me how little we’ve accomplished in detecting breast cancer early (let alone in finding a cure). I have been screaming for years about how inadequate mammograms are and questioning where our dollars raised for breast cancer research has been going. It’s inexcusable that women (and men) are being diagnosed with stage 2, 3 and 4 breast cancer because the mammograms couldn’t detect it in time or because the person was under the age of 40 and therefore was never tested. Folks, mammograms are the cheapest way to go which is why insurance companies will pay for them. Well, they will pay if you’re over 40 or high risk, maybe. But, there are too many (like Suzy) who are falling through the cracks…there are too many being diagnosed with breast cancer way too late either because the mammograms have failed to detect the cancer early or because the person was under the recommended age to be tested. It’s ludicrous. Suzy would be with us today if it weren’t for the limited thinking and methods we have. That alone makes me furious. I even find the statistics given on the Susan G. Koman site skewed and not fully accurate. Let’s remember how statistics are taken. They are studies done on specific women. I feel they by no means reflect the actual population. How can one say only 5% of women under the age of 40 get breast cancer when the studies are done on such small numbers? And yes, I know when women are diagnosed with breast cancer they become part of those statistical numbers. HOWEVER, many women who are diagnosed with stage 2, 3 or 4 breast cancer at the age of 40, 41, 42 (in most cases) have had it growing for a number of years prior to that diagnosis. Lets use my mother as an example. She was 42 when she was diagnosed with stage 4 breast cancer. Her tumor was the size of a golf ball and therefore doctors surmised it had to have been growing for possibly 3 or 4 years. That being said because she was not officially diagnosed until the age of 42 she was placed in the over 40 statistical category. To me that is not exactly accurate.

Listen, one big problem are the mammograms. Did you know the younger you are (and more fibrous your breasts) the less ability the mammogram has to detect the cancer? So tell me how the statistics are accurate? It’s not logical to me. It’s time we stopped losing so many incredible woman to this disease and start demanding better care…better detection and ultimately a cure. In Suzy’s case she didn’t have a family history of breast cancer so she was not in the high risk category. According to the statistics she had a low risk and therefore didn’t need a mammogram before the age of 40. And yet those statistics become nothing once Suzy was diagnosed. Folks, I can’t be the only one angered by this bullshit. If one has breasts, one has a risk. Every woman should be seen as a risk until there is a cure. Stop with the damn statistics and give every women equal opportunity at life.

I remember at 22 years old going to see a breast cancer specialist at a very well known hospital. I was worried about my health because my mom had died from the disease. At that time I had no idea it had taken the lives of my mom’s 4 aunts and was going to make my sister it’s next family victim. It was just an innate feeling I had to be proactive. Would you believe the doctor told me I was being paranoid and I had no reason to worry? He was very condescending. As the 22 year old, smart ass kid that I was I remember angrily saying to him, “So, you’re telling me if you watched your father die in the most horrible way because of testicular cancer you’re ass wouldn’t be in a doctor’s office scared shitless trying to find a way to keep from following in your parent’s footsteps?” Want to know the doctor’s response? He said, “Touche.” Yep, that was all he had to say. He did change his tone but continued to feel obliged to tell me I was over reacting. I never gave up but always got the same response from many other doctors and nurses (even after I had my prophylactic mastectomy). I know my opinion is not a popular one. That’s evident when you speak to a breast cancer specialist. In fact many professionals are afraid to admit mammogram’s shortfalls for fear women won’t do anything. Their philosophy has become “mammograms are better than having nothing.” But, I say if nothing is working for a large part of the population then aren’t you essentially telling those women their lives don’t matter?

Another bone of contention of mine is in the last few years there has been a push for women to get genetic testing for the two BRAC genes. For a long while a company owned the patent,so it was extremely expensive to get. Then when they lost the patent, it was more affordable. At that time it was very odd how many breast health centers were pushing the genetic testing without taking into consideration other factors of the patient. For example in my case: The facts were 5 women died of breast cancer in my family and only one survived- my sister. It was felt she was extremely lucky to have been 37 and the mammogram caught the tumor early. That was not usual. And so 6 women from 3 generations had breast cancer in my family. All of them were between the ages of 37 to 39 when their tumor’s started growing. After my sister had breast cancer she was encouraged to take the genetic test. Would you believe she did not carry either of the BRAC genes even with our family history? Funny how several breast health facilities strongly encouraged me to also take the genetic test and told me my family history was irrelevant. In fact after a long process to decide to have my own mastectomy as a preventative measure while I was in the hospital recouping a representative from that hospital’s breast health center came to visit me. Would you believe she was floored when I told her I had chosen to have this surgery without having had the genetic testing? AND when I told her my sister had taken it and was negative to the two known BRAC genes she actually told me my surgery was not necessary (even after telling her of my family history). The narrow mindedness blew my mind and it scared me. It scared the hell out of me that she was advising others without using all of the information. I had to wonder if some of these facilities were getting kickbacks for each person they had tested because there was no way they could be so ignorant. After all this facility was supposed to be knowledgable.

Folks, many breast health facilities and doctors unfortunately are making decisions that are excluding a great many and putting many at risk. I’m pissed off because there are large numbers of women like Suzy who are dying way too young… too many gorgeous souls lost.. we have got to stop feeding into the ignorance and demand better. I know this is such a sad time. My friend is gone and many are mourning the loss of a terrific person today. Some would feel I am taking the focus off of Suzy and the amazing person she was by discussing these issues. HOWEVER, while our hearts are heavy I find ears tend to be more open. More than anything I feel what a better time than now to discuss these issues. And so I feel this is a perfect time to scream out about what I feel is a travesty. I feel strongly Suzy would have done the same. I am tired of my family and friends being robbed by this bitch of a disease. Suzy’s death has propelled me even farther to speak out and up about what is being stolen from so many of us. Please be a voice with me in Suzy’s memory.

Having said that I understand all of the anger in the world can never bring Suzy back. And even more so, I cannot take away the pain that so many of us are feeling about Suzy’s passing. The bottom line is there is a husband, a mother, a father, daughters, brothers, uncles, aunts and countless friends who are in mourning. As Suzy’s family prepares for one of the hardest things they will ever have to do…to bury their spouse, their child, their sibling, their mother… I send them love and support from afar (as many other’s of you will be doing too).

And speaking of Suzy’s family and friends I would be remiss not to mention her incredible FB page. After reading Suzy’s parent’s letter just a week ago I have been compelled to check her FB page often (not even realizing others would also have the same need). At first I thought it was a dumb thing to do because I knew she wasn’t going to be there. BUT then as I started reading friend’s and family’s posts and looking at the old photos, I realized I wasn’t alone. I found it cathartic, comforting and most of all creating a sense of comradery. It’s been incredibly special and fitting for it to be Suzy who has given us that space, don’t y’all think? Every single damn post that has been written is an amazing testament of the beautiful woman Suzy was in life. Even more wonderful those testaments will be an amazing gift for her two girls to read later in life. We should all be proud of giving Suzy’s (and Ron’s) two most prized possessions that gift. Kol Hakavod to all. If I could hug each one of you, I would because I know first hand the gift all of you are giving the Rauch family today and tomorrow.

I have to say since hearing the news of Suzy’s passing I have taken many moments in my day (and night) to remember and think about my friend all while shedding many tears. I went back to re-read conversations (in personal messages) between us which spanned over six years. Some things I had forgotten and others I will never forget. I can never say enough how Suzy will always have a special place in my heart.

AND SO AS many couples celebrate their love for one another there is no better time than this one to also celebrate one of the sweetest, giving, brave and loving souls I have ever known. Her name was Suzy and she was loved by all. As my tribute I would like to share some of the letters she wrote to me and in doing so giving Suzy the last word.

****Response from Suzy after telling her Carol’s adoption of Judah was complete: “Congrats to you and Carol on the official adoption! Funny how kids change our lives in such amazing ways. I know everyone says it but it’s true…’You won’t know until you have one.’ You’re so lucky to be able to stay at home with Judah. Shira is 3 1/2 (pre-school) and Eden is 7 months (daycare). I am very happy with the quality of care/education they are both getting, but there are time I wish it could be different. But, cost of living as it is in LA, means a double income household for us! The medical benefits from my job alone make it a no brainer. Anyway, we’ll catch up more later. I’ve got to run to a lunch.” -suzy (April 12, 2008 )

****Just being Suzy : “Hey you. Just thought I would check in and see how you were doing! (I love your last status update! I find her (Sarah Palin) repulsive yet amusing at times…) Shana Tova!” – suzy (October 14, 2008)

****Response to telling Suzy we weren’t pregnant after our last IUI attempt: “Oh MaLea, I’m so sorry to hear that. I know you and Carol were so hopeful this time around. Maybe you can give yourself a little vacation from it all for a while, and then think about other possibilities later. We are having a lot of not listening and talking back issues with Shira, too. She is testing the social skills she learns at school with us at home. Very tough! She says things like ‘If you tell me that one more time, then I will never (enter what we were asking her to do here) again!’ I asked her who talks like that to her, and she always mentions a certain girl in her class…got to love it. But, they’re so cute when they are asleep, right? Shira is excited to see BOLT too, but we’ll see if she actually sees it in the movie theater, or on DVD later. She is terrified of theaters. Ron wanted to take her to see Horton Hears a Who, but she would have none of it! She’s just not ready yet, I guess. I will be seeing BOLT at our wrap party the week before it comes out in theaters, so I’ll let you know if it’s too scary (for Judah). I have only seen bits and pieces without sound so far. Hugs to Carol and Judah”-suzy (October 14, 2008)

****Response to asking how her surgery went after her hysterectomy: “I’m doing well! Thanks for thinking of me! I take it your mouth surgery went alright as well??? You can tell Carol that they indeed told me to put a pillow over my belly when I needed to laugh, cough or sneeze. Not sure it helped any, but it was worth a try. I am still a bit sore, and not lifting heavy items yet, but otherwise I am doing great! Completely off pain meds (accept for advil every now and then) and will probably go back to work on Monday Jan. 5th. Relaxing is not easy with so much to do with my “free time”. Shira had her holiday party at school today, so I am hoping to post some new pix soon. Happy Holidays to you and yours!” ttys-Suzy (December 19, 2008)

****Response to asking how Suzy about places to visit for a friend who’s kid was having surgery there: “Hey there! I owe you an apology! I have been in a slump of sorts, and started back to work last week, and have been super swamped…Just feeling overwhelmed and sort of depressed I guess. I should have responded sooner, and really hope everything went well with the surgery (of your friend).” Suzy gave suggestions of where they could go during their visit. Anyway, I hope all is well with you Carol and big J! (I loved the pictures you posted of all your animals by the way!) Hope to hear from you soon, and that you have a great 3 day weekend and fun watching the inauguration with the rest of the country on Tuesday!” (January 16, 2009)

****Response to me announcing I was having a double prophylactic mastectomy: “Hey girlie! Soooooo Sorry I have not been the most communicative person these last few months! I have been super busy at work, and am actually running out the door to another meeting, but I wanted to say that I have been thinking about you, Carol, Judah and your very hard and brave decision to go ahead with the surgery in May. I can’t imagine everything that you have had to deal with until now, and I know you will get through this as well. All my love to you, and I’ll be in touch soon!” -suzy

****Response to me asking what was going on with her after seeing something she wrote about having breast cancer: “Hi MaLea! Yeah, I sort of “outed” myself last night while watching the Stand Up To Cancer telethon…I was diagnosed with breast cancer back in June, and started treatments in July…I tested negative for the BRAC markers, so I’m safe there. I know that played a big part in the decisions you made for yourself…I’m finished with my first 4 Rounds of Chemo (AC), and onto 12 weeks more (Taxol) before having surgery sometime in December, and radiation after that…Then I too, will have perfect boobs next summer! Tell me which email address you prefer having things sent to, and I’ll send you my caring bridge site if you’re interested in following along…Shanna Tova to your whole crew!” Suzy (September 20, 2012)

****Response to an art piece I made for her. “Wow!!! MaLea, it is beautiful! I envy your ability to see things in such a creative way, and actually be able to make it physically. I do get what you were explaining about how the piece finally came to be! Most things aren’t right or perfect the first time, and great things can come out of things we disliked the most…writing, drawing, cooking… I appreciate all of your kind thoughts and words! I am getting through this with the help and love of so many people near and far. I won’t lie; it’s been awful at times, but after a good cry and a few deep breaths I always come back around. I always remember that even though things are “bad” for me, they are far worse for someone else somewhere. G-d willing, I will be fine when everything is done with. 2 more Chemo sessions, lumpectomy, radiation, reconstruction…It will all eventually pass. Have to say, that I am most looking forward to being done with Chemo and getting my energy back. I just want to feel like me again…which makes me wonder if I ever really will… I guess there will be a new me to feel like eventually. Anyway…thanks for listening to me ramble! I look forward to receiving your piece, and sharing it with my girls and Ron. Shira (the artist in our house) will love it, and will probably want to figure out how to make others like it! Hope all is well with you, Judah and Carol!” Suzy (November 11, 2012)

****Response to receiving the piece I made for her: “Hi!!! Your piece arrived this morning, and it is in perfect condition. I just love it. Feeling better and stronger with each day, but still not 100%…I know I’ll get there eventually, but of course I want it now! To answer your question from before…No, I have not been working throughout all of this, but am hoping to go back after surgery; and during radiation treatments. I am planning to go into the office later this week to say hello to everyone. Anyway, I love the pics you’re posting of Judah, Hanukkah, and your totally adorable wiener dogs. The sawhorse (took a sawhorse and made into a dachshund sculpture) is hysterical. Keep the creative juices flowing!” -S (December 10, 2012)

Suzy

****This is the last time I heard from Suzy: “Hey girly. Not much you can do but hope and pray for me! My triple neg cancer metastasized, and although it is completely gone from my great, it is in lots of other places. So, I’m in the fight again with all intensions of beating it again, but it has been a real uphill battle. Just knowing I have folks thinking of me is more than enough. Plus; I already have your gorgeous art piece to inspire me!” (October 2, 2013 at 4:52pm)

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The Loss of my Partner’s Warmth

Written on March 2nd 2013 (I forgot I had written it and found it today.)

Here it is two days before my hysterectomy and I’m relatively calm. I don’t know why. Being calm is not typically in my nature.  Even when I was discussing having the surgery with my doctor 3 weeks ago, I was calm about it. I was upset about it but calm. It’s a funny thing. Since my mother died of breast cancer I had it in my head I’d have my boobs removed one day. I knew that would be my only alternative to keep me from the same destiny as my mom. For twenty years I knew in my gut a double mastectomy would be my only option. Even when others said maybe new technology would come along by then, I knew that would not be the case. Gosh, I had hoped there would have been another option but somehow I knew a double was going to be bashert. And even though I had heard it all from family and friends that I was crazy to think that way, I was resolved to the fact it was going to happen. HOWEVER, talking about it (even for 20 years) didn’t make it any easier when the day came to choose to have a double mastectomy.  Only then did I realize the enormity of my decision. I was downright terrified. To talk about it was one thing but to actually have to make the decision and have the surgery was another. It was the most terrifying decision I had ever made as I felt as if I was walking myself (and my boobs) to the gallows.

I did ask myself: Why was I so afraid? Was it the thought of losing my breasts? Was it my fear of needles? How about the pain? What scared me so much? I had always felt my breasts were worth losing in exchange for my life but as the day approached to have them removed, I was sad to give them up.  It took the reality of the surgery for me to understand why giving up my own breasts was not that easy. I never could understand why women were so attached to something seemingly so benign (no pun). Ever since I was 15 years old I mentally separated myself from my breasts. I never saw them as being important or of any use to me. As a teenager I bound them and never wanted them to show. In many ways I was trying to live as if I didn’t have them. This way when I would lose them, it wouldn’t be such a big deal, right? Well of course it wasn’t that easy when that time came to have them removed. Many unexpected things would happen to me and those very things would change my point of view.

For one I had not expected falling in love. My partner taught me how to feel in a way I had never experienced and I loved that about her. Here was the thing. Along with hiding my breasts and trying to live as if I didn’t have them, I too never wanted to love. All love seemed to have brought me was hurt and pain. Of course many roads have been paved with good intentions. It was easy to say I was never going to love when there wasn’t anyone in the picture. But, when my partner came into my life she opened up a part of me and she gave me a new understanding of love.

By the time my double mastectomy was approaching I down right hated the thought of loosing my breasts. I had spent so many years telling myself my breasts were bad and not important. But as their untimely death was approaching I realized I was so wrong. They of course were a source of nourishment for our son when I breast fed him but they were also an important part of my intimacy with my partner.  When we made love the feeling of her chest against mine was so special. Even as I think about it today it takes my breath away. The feeling of her warm breath against my breasts connected me to her in a way I cannot explain. I hated the thought of loosing them and of loosing that connection to my lover.

After my mastectomy I lost all of my feeling around my breasts. No longer could I feel my partner’s warmth as I once could. It saddened me tremendously and does so even to this day. I miss her and I continue to mourn that loss. I often imagine having it back and feeling her as I once did. And even though I don’t regret having had the surgery, it  doesn’t diminish the reality of dealing with the loss.

Having said all of that during the time of my double mastectomy I knew in time I’d have to have a hysterectomy.  Because it wasn’t clear if my family’s breast cancer was related to ovarian cancer, my doctor felt having a hysterectomy would be a good idea. However, since I was still young and premenopausal (38 years old) for the time being I’d just have a yearly vaginal sonogram. But at that time my surgeon, my Gyn and I agreed if I was having any problems at any time and/or if something was found, we’d take no chances (and go ahead with having a hysterectomy). I was happy with that decision because having the surgery seemed so far away.

Well all was fine until 6 months ago when I started having problems. My periods were very heavy and it lasted a good 8 days. A huge difference from what I had always experienced (3 or 4 days at the most with not a lot of bleeding). I couldn’t believe what felt like a sudden change. I was bleeding so heavily during the entire 8 days that it lead to me becoming anemic. I was having terrible hot flashes that were coming more often than they were going. So, I knew as my yearly GYN appointment was approaching that a hysterectomy was not too far away. However, when my appointment to have my yearly vaginal sonogram came and then when it was time for me to meet with my GYN to go over the results I was not prepared with what she told me. A polyp was found in my uterus and a cyst was found on one of my ovaries. Of course a biopsy could have been done but as discussed by my doctors and me five years prior we would not take any chances and would go ahead with a hysterectomy. No doubt my first fear was if the cyst on my ovary was cancerous but to be honest I just couldn’t let my mind go down that road. From my experience from my double mastectomy I didn’t want to worry about something that may not be and most of all that I could not control. So, having cancer was not a worry for me. Instead, there was something else that was making me very upset about having a hysterectomy. Of course the finality of knowing I could no longer have more kids was difficult. It will always be my life’s biggest regret. But, there was something else. See after my double mastectomy I hated that I had lost the feeling of my breasts. It was my biggest struggle (even though I knew that was going to happen). And so with the impending hysterectomy I was afraid of what more would be taken away from me that would once again effect my connection with my partner.

Amazing how once in my life I had no care for my womanly body parts. In fact to me they were just parts which were worth being disposed of in order to save my life. Now, even though I do believe loosing them there parts to “save” my life was worth it, there was suddenly more to it. I had a partner who I cherished. I was scared.  I was pissed off. It seemed so unfair. I should have felt lucky but instead I was so afraid of what might be taken away.

Let me say this. My partner is a wonderful woman who doesn’t care one bit if I have breasts or not nor does she care if I have my uterus or ovaries or not. The emotions I feel (about my losses) I solely own.

It’s interesting. We never appreciate what we have until it’s being threatened or gone. Through my intimate connection with my partner, I have learned to feel. I never thought I deserved it so I stuffed those feelings away. My partner helped me, though. She loved me unconditionally. She made me feel safe to love her in a way which made me feel we were connected as one. She gave me security in a way no one else could. Those things made our time together so special and poignant. Now that it’s being threatened and could be gone, it worries me. With out that intimate connection what will happen?  I don’t want to have to mourn another loss like I did with my breasts. Please, no! Please let it be bashert to allow my partner and I the pleasure of each other in the most private of ways as it allows me to reaffirm my love for her, to reconnect and to remind myself to keep my heart open. This is my hope- this is my wish.

And so here I am just two days before my surgery and I’m ready to get it behind me. Wish me luck!