Where’d I Put My Boobs? Life Goes on During Breast Cancer
Sarah Ball
Copyright Sarah Ball 2012
Published by Cancer Support Pages LLC at Smashwords
Where’d I Put My Boobs?
Life Goes on During Breast Cancer
Sarah Ball
"Honest, inspirational and funny."
Genae Girard, co-creator of the online breast cancer group, BeyondTheBoobieTrap.com and author of Off the Rack: Chronicles of a thirty-something, single, breast cancer survivor.
ISBN: 978-0-9848175-2-8
© 2012, Sarah Ball. All rights reserved. No part of this book may be used or reproduced in any manner whatsoever without written permission except in the case of brief quotations embodied in critical articles or reviews. For information, address the publisher c/o Concierge Marketing Inc., 13518 L Street, Omaha, Nebraska 68137, 402-884-5995.
This book is a personal story and is not intended to be a source for any type of medical advice, legal counsel or other professional guidance. If you show symptoms that concern you or if you have any questions that require a licensed professional, it is your responsibility to seek advice from the appropriate professional. Author has obtained permission from persons mentioned (or their families) to share their stories, or she has used pseudonyms and changed other identifying information. Products or services mentioned herein are the property of their respective trademark, service mark or copyright owners and are designated so by this statement. The author holds no responsibility or liability for the performance or non-performance of any product, service or organization mentioned herein.
Contents
2. Wife of the Year Award 04 Dec 2009
4. Blonde and DD’s 04 Feb 2010
5. Wanna See My Scars? 05 Feb 2010
6. Friends and Hope 06 Feb 2010
7. Jell-O and Flying Prostheses 08 Feb 2010
8. Rats Naturally Die from Cancer 09 Feb 2010
9. Patience and Bathing Cats 09 Feb 2010
10. Port 12 Feb 2010
11. Roller Coasters 13 Feb 2010
13. Prime Rib and Running Shoes 18 Feb 2010
14. Wrestling Moves and Button Down Shirts 20 Feb 2010
16. Post-Surgery Day 3 28 Feb 2010
22. Home Again (Smackdown) 23 Mar 10
24. Seromas and Flowers 02 Apr 10
26. Femininity or Lack Thereof 07 Apr 10
28. Ace Bandages and Reader’s Digest 17 Apr 10
37. Perky or Flat Tires? 11 Jun 10
38. Stretch Marks and Sadness 13 Jun 10
39. Finding New Dreams 17 Jun 10
41. Sleeping on Rocks 01 Jul 10
42. Bucket List Dreams 03 Jul 10
43. I Love A Reason To Laugh 05 Jul 10
46. Surgery and Peri-menopause 18 Jul 10
49. Bathing Suits and Flapping in the Wind 24 Jul 10
51. Loss of a Family Member 27 Jul 10
52. Places 29 Jul 10
53. The Tape Won’t Break 31 Jul 10
54. Like Buying a Car 04 Aug 10
55. The Toughest Stuff 05 Aug 10
56. TSA 06 Aug 10
57. In Memory of Cynthia 09 Aug 10
59. Women of High Profile 16 Jul 10
60. Cats and Rimadyl Do Not Mix 19 Aug 10
62. Monster Waves and Hope 24 Aug 10
63. Working and Visiting 01 Sep 10
64. Passion and Peace 03 Sep 10
66. M.A.D. 08 Sep 10
69. Because You Were My Friend 21 Sep 10
71. Underwire Nightmares 01 Oct 10
72. Race For The Cure 03 Oct 10
Introduction
Living the life of a Navy brat and Air Force wife, I developed a grit, an independence, that is unique to the lifestyle of the military. I was used to moves, fixing things myself, deployments (military business trips), and being alone.
Our sons, Fred, sixteen, and Alex, fourteen, are used to the temporary single-parent household during deployments. Among other coping skills in a military environment, we learned to speak in acronyms and tell time on a twenty-four-hour schedule where 1700 hours is 5:00 p.m.
Living the life of a two-time cancer veteran (breast, and later ovarian), I developed a similar grit. I got used to appointments, procedures, treatments, and surgeries. I learned to live with pain, fear, and the possibility of recurrence. I learned medical terminology and how to interpret the test results.
I had been surrounded by breast cancer since my mom got it when I was a little girl, and she was in her mid-thirties. She has had it more than once, gone through the chemotherapy and the radiation. She made it out the other side.
My aunts, her sisters, both had breast cancer. They were also young and made it out the other side.
My older brother had skin cancer at twenty-two. He also made it out the other side.
All of them were young when diagnosed, all of them survived. I live in a family of survivors—of cancer veterans. It was never a question that I would get it. It was also not a question that if I was careful and took care of myself that I would beat it as well. It was just an expectation. So when I got tested for the gene, it was only a formality. I knew I had the BRCA2 gene. I knew I would get breast cancer.
The genetic BRCA cancers are tripped off by estrogen. The theory right now is that if you get rid of the estrogen, you can reduce your risks so much that you may not get cancer at all. I liked this idea. I was done with my pregnancy years, and I was much more willing to be menopausal than a cancer patient. After much deliberation, I decided to have my ovaries removed before I got breast cancer as a way to hopefully add some validity to that type of treatment. My surgery was scheduled, and I was ordered to have my routine mammogram that was due before the surgery.
Guess what we found?
I began to write a daily Facebook posting as a way to tell my friends and family how I was doing after I was diagnosed with stage I breast cancer. I had been through some other traumatic things in my life recently that had left me feeling very much alone. As it turns out I only felt alone because no one knew quite what to say.
When the diagnosis came in that I had breast cancer, I was suddenly surrounded by people who loved me, cared about me, and wanted to help me on this journey with their support. This was something they knew they could do for me. I was flooded with phone calls, emails, letters, and flowers, and I could not keep up with it all. It was wonderful.
Although I loved the calls, I spent something like six hours a day on the phone for the first couple of days after diagnosis with everyone wanting to see how I was taking the news. I decided to do some journaling on my Facebook page as an easy way for people to know how I was and what I was going through.
After diagnosis, very often the true strength of a marriage becomes clear. Many marriages either end during this time, or they strengthen. In my case, it evolved right under my nose, and I didn’t even realize it.
Things between Lee and me had been very bad for a long time. We had been hanging on by a thread. We had lost a daughter, and part of me blamed him, because he was not there for me like I needed him to be. Our marriage had been rocky from the start because of the typical mistakes people make in marriages. The problem was that I saw them as fatal flaws, not as normal mistakes in a marriage between two imperfect people.
We were in a very dark, unfriendly place when I was diagnosed, but gradually, grudgingly, we evolved into a place of safety and peace that was still admittedly shaky, but a very different place than we had ever been. I have to say, it was a good place, and I almost missed it because I was so busy being angry about the past that I was ignoring my present. It took many stories that I heard from many cancer veterans to finally get it through my head that I was the one being stubborn, stupid, and blind—not to mention unforgiving.
I need to begin in December 2009. The wedding ring had been removed and was sitting in a drawer. My husband, Lee, an Air Force officer, was in Baghdad, Iraq, two months into a six-month military deployment. Things between us had deteriorated to the point that when he left in October, I had already decided I wanted a divorce. I didn’t feel it was right to spring that on him then, so I waited, planning on telling him upon his return. My story begins there.
If you are reading this because you have cancer, first I say to you: Welcome to the club with the most members who never wanted to be included! Next, I say: You are a warrior and a veteran, fighting for your life. What are you going to do next?
I find that people with a cancer diagnosis either seem to wake up and get moving, or decide to slow down. Either way, you re-evaluate your life and decide what is worth living for. That part of the journey is wonderful, and fascinating, and very surprising. Think of the cancer as your version of a cocoon. You are a fuzzy caterpillar. Cancer wraps you in a cocoon, and after treatment, you find yourself morphed into an amazing butterfly. You’ll be beautiful in ways you never ever dreamed, and with a brand new pair of wings to fly.
Do not be disheartened during your isolation in the cocoon. You are not as alone as you feel. Allow others to reach for you and hold them tight. Have faith that God will make it all work out for His will in the end, and let that be enough.
Join me now on my journey. I hope it inspires you, and most of all, I pray your butterfly days ahead will be filled with a new joy.
Chapter 1
01 Dec 09
I lost a daughter.
Well, I was losing a daughter. It’s a long, horrible, terribly sad story, beginning with a Russian orphanage. As has been in the news recently, and off and on over the years, these kids have issues. Some children more than others. No one knows exactly what happens to these kids in the orphanages from a mental standpoint. Some kids do fine when adopted. They adapt, and they are able to trust again, and love, and be all right. Some kids are not so resilient. Some kids never recover from the horrors of what they lived.
The orphanages try their best to take good care of the kids, but no matter how hard they try, the kids are neglected out of sheer numbers. They are abused sexually by other kids, and many times also by adults. They are physically abused or had wounds left untreated due to lack of supervision or lack of medical supplies. Food choices are limited, as well as amounts, so they often suffered from malnutrition. They are neglected on every level. Antibiotics are scarce, so the kids are all sick for prolonged periods of time, and often have parasites from contaminated drinking water and living conditions. They lose trust; they take on a warped, unsafe view of the world where they are in a feral survival-instinct state out of necessity.
When they are adopted, many of them are able to move on, but others are not. Others stay in that feral, survival state. Depending on the severity of the issues, the only one to see the child as they really are is the adoptive mother. I believe this is a combination of her being the main caretaker, and almost an instinctual need to blame their real mothers for abandoning them. It’s so different for each child, for each orphanage. But mark my words, I knew better than most. I had visited several orphanages over the course of a few weeks, in different years.
I had seen the abandoned children from the perspective of an observer, not just an adoptive parent, taking information about a child back to a potential adoptive family. I had interacted with the children as a group, I had seen some of what happens to them when no one was looking, which was often.
With staying in this state of mistrust, and anger, and survival, these kids develop all sorts of nasty, scary mental illnesses. They were very real, and the kids do not just get better if you hug them more, feed them regularly, get them counseling, or give them medication. These kids, just like anyone with any mental illness, only get better if they choose to. The difficult thing with these children is that they trust no one, and often choose not to get better, especially if they feel they can become successful in punishing the mom or creating their own version of a “safe world” that works for them alone.
They were abused kids who become abusers. They abuse from very early on, just as they were. Because of the damage to these feral kids, regular therapy does not work for most of them. If they are not reached as they grow, they become smarter, and stronger, and more manipulative; they could become a danger to others. They start to hurt and abuse others, starting with the adoptive mother. They plot to kill, and start practicing on animals and on those smaller and weaker than themselves.
In 2008, at the age of six, my daughter, who was plucked from a Russian orphanage in 2000, pretended to be mentally retarded because she realized that people let her do things that otherwise would be considered inappropriate. Things like pretending to not be able to button her pants to get people (especially her teachers) to put their hands in her pants to button them. Then she would come home and tell me the teachers put their hands down her pants. Eventually things progressed to the point of her trying to sexually abuse other children; she was hurting animals, trying to kill more than one cat, and she did kill a parrot.
I took her to therapy since the day we got her home, but unfortunately, not everyone who claims to be qualified to reach these kids actually is. I endured years of abuse by her. Physical: she was always hitting and kicking, and trying to bite me. She would purposefully break things that were within reach, it didn’t matter whose it was or what it was. Nothing had value to her. Emotionally: She screamed at me for several hours each day, telling me how horrible I was, how worthless, how I stole her from her mother in Russia to be her slave. Mentally: She was the sweetest thing to everyone else around until the very end of her time with us, so when I told people what was happening, they didn’t believe me. Some still don’t. Her levels of manipulation were astounding—and frightening.
I was accused of not letting her have friends, but I could see her trying to sexually abuse the other children. I was told to quit pushing her so hard, that she was delayed, yet when put in positions where proving herself was to her benefit, she proved more intelligent than the other children. She abused me, and I was told to “be nicer” by people who had never been in my home, and had never seen her act up with me. I researched, I talked to nationally renowned specialists, I went to seminars, and I tried everything I could.
By the time I finally found someone who could help her, she was becoming too difficult to handle, and dangerous. When she told me that she wanted to kill me and her brother, as well as how she would do it, and that she fanaticized having sex with her father and other brother, I could take it no more. I could not keep everyone safe from her.
She needed serious help that I could not provide.
We looked into places that were qualified to help her, but insurance would not cover the $1,000 a week. We found a residential treatment center that knew what they were doing in Denver, but insurance would only pay for her for five months, and she would not have been ready to come home by then, nor would I be ready for her. I had to keep everyone safe all the time. I simply could not do it anymore.
She had done a six-month in-home respite care with one of the best-trained caretakers in the area, and even the caretaker could not keep my daughter from hurting others. I had to give her over to the state and pray that they would get her treatment, and in doing so, I had to give up being her mom. She wanted that, and told me so happily.
We had her psychologically evaluated before this decision was made, and the results were flat out scary. Had she had the same test results as an adult, she would be considered to have the mental profile of a serial killer.
No kidding.
The doctor who did the testing thanked me for holding out so long and trying my best.
All the people who knew these kids and what they were capable of agreed that I did an awesome job, but that it just wasn’t enough. When the state first got her, they were calling me for resources to help her. Because all of the agencies qualified to deal with her were out of state, however, she was put someplace local.
I did love her. I tried to prove that to her. I did everything I could, tried everything, not always successfully. But in the end it didn’t matter. She chose to leave. She chose to behave in such a way that we could not keep her. She was always in control of her own behavior, which made that reality scarier. She never asked for any of her things, none of her toys, nothing. She was told she could have them, and she didn’t want them. She didn’t want us. She didn’t want me.
The state still had everything tied up in court, so things were not over yet. I had been so devastated by things that I could not even look at girl clothes or toys without wanting to cry and run away, even though she had been out of our house, and I had been safe from her, for two years. I felt like they had not listened to a word I said about what she did and the state shuffled her around several times, so did not exhibit any of the ugly behaviors at all.
She has since remained in a “honeymoon” period of behavior. They allowed her to get worse, by not pressing her to get better. That was my opinion. I’ve been badly hurt by her, and the emotional scars were terrible. Some days I wish they were visible to show to those who did not believe me. There were those within the state who did try very hard to help her, and even they were ignored.
Was I seeing a counselor? No. Why? Because the one I was seeing when everything came to a head with my daughter asked me the following question: “How does it feel to throw your daughter away like the trash?”
Yes, a therapist asked me that.
I was so devastated, that I have not trusted a therapist enough to go to one. I did see my pastor, but that was it. With my faith, and my friends, and the family who has stood by me, it was enough.
Losing a child is the worst thing in the world, and it doesn’t matter how you lose them. Losing them in such a way that you cannot openly grieve is worse still.
Chapter 2
04 Dec 09
I can’t believe what I just did. I can’t believe that I could do that to someone, even as mad as I was. Lee was in Iraq. Baghdad. He was getting shelled, hearing gun fire, explosions, he was far from home, and what do I do? I blurt out that I wanted a divorce while we were talking via Skype. I didn’t want to do that. I didn’t want to tell him this way. I was angry because we were having yet another argument, but that did not make it OK.
I felt horrible, and guilty. I admit that part of me felt justified and more resolved on my course of action. But I still felt like a horrible person for what I had done. It was not OK to put that kind of stress on a man when he was in a war like that. Part of their psyche hangs on to good things by thinking about what they have to look forward to when they return home. I had stolen that peace from him. Even if it was a false dream for him, and I knew that, it was real for him, and I destroyed that.
I now worried about how he would cope over there knowing that coming home would result in my leaving. Many guys in war-time situations when faced with news like that often snap and commit suicide or all sorts of other possible ugly scenarios associated with traumatic stress. How I could I do that? How could I let my tongue slip in that fashion? How could I be so selfish?
This ranks as my top worst moment as a human being on this earth. What an honor.
Chapter 3
26 Jan 10
On the 27th of January 2010 I was scheduled to get a salpingo-oophorectomy. I was going to get my ovaries and fallopian tubes removed. At that time I scheduled the surgery, I did not have cancer, but was probably going to. All the women on my mom’s side older than I, with only two exceptions (one of mom’s cousins and her daughter), had had breast cancer. There was never a doubt in my mind I would get it, but I was not worried, because I knew to look, to watch, to get the mammograms, etc. So when the genetic test came back positive, it was of no surprise at all. The BRCA2 gene was responsible for three cancers: breast, ovarian, and skin cancer. We had skin cancer in our family too. My brother was unlucky enough to get that bugger in his early twenties, but my mom has had it too.
So I found out about the full genetic testing results in the fall of ’09. Then it was a matter of deciding what to do about it. My breast cancer doctor recommended prophylactic bilateral mastectomies (fancy terms for having the breasts removed “just in case”). However, my gynecologist suggested complete prophylactic hysterectomy and oophorectomy-removing the ovaries (again, “just in case”).
You see, they had discovered that the production of estrogen was what triggers this gene to create cancer. I needed to get rid of the estrogen. The two main estrogen-producing organs of the body were ovaries and the breasts. So we wanted to get those removed. The ovaries were the biggest producers, so it made sense to get rid of those first.
Now, having a complete hysterectomy was huge. Previously, it was major abdominal surgery where you were removing a ton of female organs in the nether regions, and it throws you into immediate menopause for those of us who are not naturally there yet. They now have procedures to do this laparoscopically, which means they don’t have to cut you open from one side to the other, but can make a few small holes and pull everything out from there. So recovery isn’t as bad as years ago. But it is still a major trauma to the body.
So, with the hysterectomy, they would remove the ovaries, fallopian tubes, uterus (where the baby grows), cervix (where the baby’s head has to squeeze through), and neck of the vagina. Now, didn’t quote me here, this was just my understanding, but I know I am not too far off. Anyhow, this is what was involved. Well, in my family, we had breast cancer and skin cancer. No one (yet) has ever had ovarian, uterine, or cervical cancers. So, since my doctors disagreed, I got to choose. Lovely.
If you ever want to shock the doctors, especially the specialists who were the leading ones in their fields, tell them you disagree with their recommendations. It’s interesting. Not really fun, but when you have to make the choice: get educated! My surgeons were great in their own fields; leading scientists and surgeons who were both on the team that helped discover the link of the BRCA2 gene to estrogen. Well, let’s just say they were not used to anyone disagreeing with them. So it seemed to really stop them cold (and not in the best way), that I would not do exactly as they wanted.
I had to decide what my risks were to get the best care. I had the best docs, but the decision was in my hands. That was a bit scary. So I had to sit down and reason it all out. My family has the breast cancer first and foremost. That was the number one concern. That would indicate getting the prophylactic mastectomies (I’m getting tired of writing all these huge words. That is why in the medical field, like the military, there are a ton of abbreviations.). However, since the cancer was activated by estrogen production, that alone would reduce the risk dramatically (by like eighty percent) of getting breast cancer. So I should remove the ovaries. Get the hysterectomy? No. The estrogen was gone without the ovaries. The BRCA2 does not include the increased chance of the other female cancers, aside from breast cancer with the ovaries gone. Getting a Pap smear would detect those cancers, so I could be careful, just in case. Just like getting the mammograms!
I decided to get just the ovaries and fallopian tubes removed. In case you were wondering, the thing with the fallopian tubes was that they retain enough of the estrogen to maintain an amount of risk (think a drinking straw when pulled out of your Pepsi still has soda in it). Therefore, they take the fallopian tubes.
OK, let’s do it.
That was scheduled for the twenty seventh of January. It was an outpatient procedure that lasts only an hour, and I’d be up and around to normal activity in a few days. Then I got to deal with menopause. Not gradual menopause, but wholly crud, here it comes, menopause. Fine, we would deal. It was a reasonable enough of a surgery.
I had told Lee that I didn’t want him to come home for the ovary removal surgery. I truly did not want him there. It seemed stupid to me to have him struggle to get home in time, a trip that would be fraught with potential delays, and missed connections, spanning several days, only to be home for the surgery and three-day recovery, then turn around and go back. Besides, I had planned on moving out after he got home, but I wasn’t ready to make him aware of the plans I was making. I did not want him in the house.
Besides, I thought it was a nice thought to try to be through the majority of the nastiness of menopause (the tough emotional stuff hits hard and fast, but levels off after a few months) before he got home.
Anyhow, before the surgery, it was recommended that I get a mammogram, just in case. I was due anyhow, as I got them every six months now. This time they wanted to do an MRI of the breast. This was not a mammogram. I keep lumping them together because their end result for both procedures was to look for the cancers. The MRI was done with a contrast, which, joy, was done with an IV push.
Crap.
They didn’t tell me that. During the procedure the vein in my hand blew, but it didn’t bubble up, so we didn’t know it had blown. I ended up with painful contrast in my hand (that hurt for a month), and almost none on the resulting MRI. So I was told that the test had to be redone. The MRI was done on the twelfth of January. My radiologist was not notified that this was a pre-surgical thing, so there was no rush on it. She didn’t get back to me until the afternoon of Friday the twenty second of January that the test did not go, and we had to repeat it.
Great. Right before my surgery I got to screw around with blowing more veins? Then she let me know that something DID show up, and we really needed to look at it since it may affect my surgery. Now, at this point, I was thinking they would be doing, at most, a biopsy during the surgery, OK. No problem. But I asked if we could do the regular mammogram instead, and she said that was fine.
I went in, and we did a regular mammogram.
I love to look at radiographs and ultrasounds and such. I had taken a basic radiology class. I could see a lot of the stuff you otherwise had to be trained to see. I can’t tell you what I see, but I see it. So I look at the digital mammograms right after they were taken, and I see it, too. We repeated a mammo on the area. Yup, something’s there. So we then did an ultrasound, and yup, it’s there. My radiologist told me that if it was anyone else, they would have missed it, but since it was me (yeah, they knew me …), they wanted to do a biopsy.
Now.
As I sat there in this little white bathrobe in this cool room, we got everything set up, and waited to get insurance approval.
Now.
The radiologist called the oncologist’s office and asked the head nurse to find out if she needed a referral from my insurance to do the biopsy. I waited for three hours, sitting in the little white robe in the waiting area, awaiting the call to either get the biopsy, or go home. I finally went back out to the receptionist, who called the oncologist nurse back.
The response from the head nurse?
“Oh, well it takes about three days to get a referral through.” She had not listened to the fact that the biopsy was a rush, nor had she followed up with my insurance to find out what, if anything, needed to be done.
I got on the phone myself, and within five minutes I reached my insurance company and found out that I did not need a referral since the mammogram found something, and I was clear to get the biopsy. I was not a happy camper with the nurse.