10 years married
In the past 10 years, John and I have lived in several cities. We’ve moved six times. Together, we’ve had five paying jobs, six cars, and two kids. We’ve had many vacations, bunches of friendships, occassional disagreements, and a whole lot of laughs. We’ve survived a few car accidents, kidney stones, a miscarriage, family deaths, parenting dilemmas, and breast cancer. And this past weekend, we celebrated it all.
Friday marked our 10th wedding anniversary. We went to Daytona Beach, where we lived before kids and budgets and a mini-van. While the boys stayed with my mom, we stayed in a nice hotel on the beach. We walked on the sand and played in the ocean and basked in the sun. We ate out and saw a movie. We went to a bar and we slept until 10:00 am. And we visited with the friends we left behind in this city — and for me it was an emotional journey back.
I had not seen these friends in one year. Not since I was diagnosed. They have all been involved in my cancer journey through phone calls, e-mails, and visits to this web journal. But we have not seen each other face to face since my life took a detour. This weekend, I saw their faces. It was a powerful reunion for me. They wrapped me in their arms and filled me with warmth and love. They let me cry and heard my story. They helped me heal.
So the weekend was a celebration — a celebration of 10 years of marriage and a celebration of friendship. And I am back at home now, recharged and motivated and feeling stronger than ever.
Yesterday I gave my consent for Herceptin — my next round of chemo that will take me back to that infusion room with the pink lounge chairs. I will begin the first week in August for a “loading dose,” will report back one week later for a normal dose and then will return every three weeks after that for one year. In two days I will have my heart tested for a baseline reading and my heart will be monitored every three to four months throughout treatment. Apparently, Herceptin affects that pumping of the heart. So a nice steady pump might slow down or become erratic. My doctor says this can normalize within six months — and for some it takes one year. It’s uncharted territory, really. Because Herceptin is so new, there are no 10 or 20-year studies to draw from. There are just women who have been studied in clinical trials for the past few years. And no huge conclusions have been drawn yet — except that Herceptin is showing great promise for saving lives.
So I have consented to this therapy because it may save my life. I hope my heart can take it.
Today I needed some inspiration. Most days I am fine. I feel happy and healthy and motivated. Other days I feel emotional and overwhelmed and worried. Today, thinking about my health and my future and all the options and choices that float around in my head, I felt a bit of panic. So John reassured me. My mom hugged me. Joey said, “I love you, mommy.” And Danny told me before he went to bed, “you’re a cutie.” And then I watched a video my sister forwarded to me a few days ago. It’s uplifting. Now I feel better.
Sometimes it’s good to be in the dark — to not know all the facts and to just happily take things as they come. I was somewhat in the dark when I had my lumpectomy. A doctor told me I needed surgery and I had it. I did a bit of research but I mostly placed my trust in the surgeon and didn’t really question the side effects of surgery, the possibility of death that comes with any major operation, the long-term implications like lymphedema. I just had the surgery. But that was seven months ago. Since then, I have been bombarded with options and decisions and I have become a professional information seeker. I want to know the good and the bad, the statistics, and the personal stories of others in similar situations. This helps. But it also scares me.
When my oncologist suggested I consider taking Herceptin as a preventative treatment, he told me there are possible long-term effects on the heart. He said there are not many short-term side effects, other than possible fever and chills at the time of infusion. But like all medications, there are all sorts of possible side effects, many of them rare. My oncologist did not name them all — perhaps they are statistically insignificant. Maybe I should have taken the information he gave me and made my decision — which would be to proceed with a therapy that can give me a 50% better chance of survival. But like I always do, I looked for more information on Herceptin. And I found all the possible side effects.
There are many possible side effects, most of them not likely for me, but what worries me is the fact that 15 women have died from Herceptin. Out of 25,000 women in one study, 62 had an allergic reaction. And 15 of these 62 died. I’m sure just as many people have died from the chemo drugs that have already been pumped into my body. And I’m still alive. People have died while having surgery. I’ve had several surgeries in my life. I survived them all. Women have died in childbirth. I’ve had two big babies and could have had major complications — but I didn’t. I survived and so did my babies. So I know the liklihood of my having serious problems with Herceptin in probably low. But it’s on my mind.
The same oncologist who suggests Herceptin once told me to stop reading. He said that we usually seek information when we are confused or worried. And in these states, we focus on the negative angle of the information. Which is what I do. I bury the fact that thousands of lives will be saved by Herceptin and I obsess about the fact that a few have died from it.
So I am still wondering about this drug. My gut tells me to do it — and I probably will — but first, I must find my way out of this maze of information.
Information is a gift. And it’s a curse too.
I am returning to my old self. My hair is growing back — and on most days, I actually like my dark, short, wavy hair. My skin is back to normal which means the effects of radiation are gone — no redness or irritation or pain. Just a regular armpit with a few scars. My menstrual cycle has returned — so I will not enter menopause at my young age and I now have back the option of getting pregnant. There are many issues to consider, and it’s recommended that I wait one year before making a decision, but the choice is mine and that is enough to make me happy for now.
My energy is normal again too. Joey and I were on my bed the other afternoon, watching TV. It was the first time in a long time that I let my body rest without fighting sleep. I was wide awake, not tired at all. There were times in the past months when fatigue surrounded me. One day I feel asleep in a living room chair and woke to Joey saying, “mommy, did you have a nice rest?” I am no longer desperate for sleep during the day. I like that.
Today I saw my surgeon again — seven months after he removed my lump and four lymph nodes — and he looked at my breast for a possible infection. He determined it is not infected. He said I am well. He told me I’m good for another 10,000 miles. I hope I exceed 10,000 miles.
About a month ago, my sister Tracy called me on my cell phone — I was at a dinner party with John — and she asked me if had taken the drug Herceptin for my breast cancer. She said there was going to be some big announcement on the news about this drug and she wanted to know where I fit into the puzzle before she watched it. I told her I had not taken it. My oncologist did not recommend it due to heart toxicity and unknown benefits. I fit the profile for taking the drug — I am HER 2 positive which means my tumor over-expressed a certain protein that makes it aggressive. Herceptin is designed to combat this over-expression and reduce recurrence from an aggressive tumor. But like other drugs, the potential long-term side effect (heart damage) outweighed the benefit. At the time anyway. Now things have changed.
Today I saw my oncologist for a check-up. He told me his opinion on Herceptin has changed. That big announcement Tracy saw revealed a new study reporting a significant reduction in recurrence for patients like me. My oncologist said the new report on this drug is the most impressive he’s seen in a long time — and he thinks I should now consider taking Herceptin. He is not completely sold on it because of the heart toxicity — there is no way to predict what the long-term affect could be for me when I am much older because the drug has not been around very long. But he seems to think the benefit might just outweigh the gamble of what the drug may do to my heart. It was reported on one website that:
“Data showed that Herceptin given in the adjuvant setting with chemotherapy to Her2-positive breast cancer patients significantly reduces the rate of recurrence compared to chemotherapy alone … Herceptin’s cardio toxicity data was also presented and it was found that although there is some risk, Herceptin given with chemotherapy was found to have acceptable cardio toxicity and that the benefits of the protocol outweighed the risk. It was stressed that these risks must be discussed by doctor and patients and that patients must be carefully monitored.”
So I have three weeks to make a decision. If I decide to proceed with this therapy — which in the broad sense is considered chemotherapy but is more specifically called immunotherapy — I would have a sonogram of my heart for a baseline reading so I could be closely monitored through therapy. Therapy would be administered via infusion which means the drug would enter through my port over the course of 90 minutes. I would go every three weeks for one year.
My gut — which seems to have guided me well so far — tells me to accept the therapy. The benefit seems to be clear and while the long-term affect on my heart is unknown, there are no significant short-term side effects (like nausea, vomiting, hair loss). After two hospitalizations, I won’t rule out the possibility that my body may suffer from the therapy, but my oncologist is not worried about side effects that would affect my normal functioning.
So I thought my treatment was complete. And perhaps it will go on for another year. I am not overly anxious about this — it may be the Zoloft that cuts down on my anxiety or it may be my weekly counseling sessions that are helping me process overwhelming information. Regardless, I plan to keep tossing this new dilemma around in my head until I feel a definite sense of direction.
My hat is off. My wig is off. I am now a short-haired brunette and today I am confident. I went to a hair stylist this morning who colored my hair a bit — she added a bit of reddish brown to even out the color — and shaped it up around my ears and neck. She played with gels and pastes and tried to find something to give me texture and lift. Hairspray did the trick. And a blowdryer applied to the wet hairspray makes my really short hair stick up a bit. This makes me feel okay. I didn’t like the completely flat look but this new look is okay.
I unveiled my new style at Joey’s preschool when I picked him up. The reaction was positive. Joey said, “you don’t look any different.”
I feel different — with this new length and new color. But I feel free too — free from hats and wigs and cancer. Free to be my new self. Yeah.
Photo: My niece (Jordan) has more hair than I do.
Joey is a champ. He went to preschool for the first time today — after 4 1/2 years of staying at home — and he did so well. He cried a bit when I said “goodbye” but the teachers told me he recovered and had a great day. He played indoors and on the playground, had circle time, made a lion out of a paper plate and construction paper, went to the chapel — where he said a guy named GOD talked to the kids — ate a snack, fed the classroom fish, went to the potty, and then gave me a big hug when I arrived to pick him up. Since we’ve been home, he’s told me about a boy named Zachary and how he helped clean up when the “clean-up song” was played. He got a sticker for being a good boy, and he told me how he really likes his teacher’s hair. He wonders how she’ll wear it the next time he sees her.
I think Joey will see his teacher again tomorrow. I had intended to send him to school on just Mondays, Wednesdays, and Fridays but I think the continuity of going each day may be a more solid start for him. Once he settles into his new routine, I can cut down on the days if necessary. This way, Joey will get to experience the theme of each day — bible day, craft day, water day, pizza day, and music day.
This transition for Joey — and me — has been in the making for quite some time. I thought it would be hard for me to see him go and I have long thought he would resist the whole notion of school. But today, I think we both were ready. Joey was confident and did well. And I was confident and did well. And for the first time in two years, Danny got hours of individual attention. Danny hopped up on Joey’s bed and snuggled all the stuffed puppies and alligators and dragons that Joey usually keeps to himself. Danny giggled and smiled and squealed with delight.
And we are delighted to have Joey home — to know he survived his first day of school and to witness his new excitement about this phase of his life.
The other day Joey emptied all of our video cassette tapes from their boxes. He made sure each box had an opening at its top and bottom and he slid the boxes on his arms and legs. Each arm and each leg had a display of about three boxes. He looked a bit like a robot, his arms and legs held firm by boxes. He shuffled when he walked and he created all sorts of stories about these boxes. Mostly, they were “protectors.” Like armor, maybe. He likes knights and swords lately so it makes sense.
Joey wore his boxes with me to the grocery store. He struggled into the van and managed to buckle himself into his car seat. When we arrived at the store and he was wobbling through the parking lot, he said, “Let’s see how many people look at me.” He knew people would look. He knew his attire was different and out-of-the-ordinary and he wondered what reaction he would get. And people did look. Some smiled and some had blank stares. Before long, Joey peeled his boxes off — he was starting to sweat — and walked through Publix as he usually does, asking for cookies and candy and balloons.
I wish it was easy for me to remove my wig and walk freely in public with my short, dark, and curling hair. Something makes me not ready. I know part of it is that I don’t love what I see when I look in the mirror. My whole appearance is different. I feel naked without my shoulder-length, blond hair. I wish I could see this time in my life as a new beginning, with a new look. But instead I feel self-conscious and hesitant to unveil what lies beneath my borrowed hair and hat.
I wish I was more like Joey. I wish I could walk into the grocery store, proud of my new hair and eager to test reactions. One day.
Today I attended an annual MOMS Club banquet — it’s a celebration of the past year, full of playgroups and club events and hard-working moms! I joined the Gainesville MOMS Club when Joey was 10 months old. I intended to find friends and socialization for my stay-at-home kid. And I found both for him. But as I look back, I realize I may have gained more from this club than Joey did. Much of what I gained came this year. And it has touched me in powerful ways. So I am sending this e-mail to the moms in this club.
I wish I could have stood up at the banquet to say this publicly but my emotions are a bit overwhelmed lately and I don’t know that I could have spoken clearly. But what I want to say is this …
Thank you from every fiber of my being for your support and love and encouragement and attention throughout my journey with breast cancer. At the banquet today, I realized how fortunate I am to have this support system of moms. I knew I would make it through my treatment (which ended last Friday after 6 months) — I really had no other choice — but I did not know I would have so many people lifting my spirits and holding me up. I have received flowers and cards; e-mails and phone calls; hospital visits and home visits; cozy socks and a quilt that I sleep with every night. I have spa gift certificates and a new scrapbook. And today, so many of you checked on my progress. You are sincere and loving women and I can honestly say I would be lost without you.
If you wonder why you pay $20 a year for membership in this club, just ask me. It’s more than finding friends for our kids and a social outlet for ourselves. It’s about deep friendships and shoulders to cry on. It’s about giving and sharing. It’s about helping save lives — like mine. Recovering from life-threatening illness takes physical strength but it takes so much mental strength too — you all gave me the strength to fight. I will never forget what you all have done for me. I am forever grateful.
mom of Joey (4 1/2) and Danny (2)
I will continue to write in this web journal because although my official treatment is complete, there is still so much to write about — like the pile of medication that sits in my kitchen cabinet and stares back at me each time I open the cabinet door to get a sippy cup or a drinking glass. It all sits in a green plastic bin, with the exception of two medications I am currently taking. They sit on the counter as a reminder that I must take them each day. Sometimes I still forget to take them on time. Sometimes I wake in the night and realize I have forgotten to take something. So I jump up and swallow what is necessary to keep me healthy.
I have been to the Walgreen’s pharmacy drive-thru countless times in the past six months. I always wonder if the pharmacists and technicians have put together the pieces of my puzzle and have determined what my condition is. Zofran and Emend and Phenergan for nausea. Neulasta for blood counts. Antibiotics for infection. Ativan and Xanax for anxiety. Steroids for allergic reactions. Mouthwash for mouth sores. Zoloft for depression. It’s startling for me to look at my collection of medication. Fortunately, much of the medication has never been touched. Some bottles are missing just a few pills. And although some prescriptions have been used and refilled, these are in the minority. There have been times when I have felt heavily medicated and have struggled to function normally. But mostly, I have survived without drugs. And I know there are other people struggling with illness and disease who open their kitchen cabinets and see a whole lot more staring back at them. I am lucky.
Exercise brings me pleasure. I feel better when I exercise — like I’ve accomplished something that I know is good for my body and my soul. I like to sweat and see the accomplishment soak into my clothes. I like to take a shower and feel clean again. This practice motivates me, refreshes me, relaxes me. Exercise is the one constant I’d like in my life. I don’t always get it, though — at least on my terms. But then I have high expectations.
I bought a jog stroller recently. I had a grand plan to take Joey to preschool and then come home and walk the hills in my neighborhood with Danny in the stroller. He liked his cousin Jordan’s jog stroller and he sat peacefully in the cozy seat. So I bought him his very own, navy blue, cozy stroller. And he refuses to sit in it. He wiggles and whines and chants “wanna walk.” So plan B is to come home and walk on my treadmill — while Danny plays and I watch him. I am not sure what plan C will be.
This has been my saga for four years — ever since I became a mom and realized my time was no longer my own. I’m not good about exercising in the evening so my routine usually involves kids, during the day. And my routine has changed so many times. I once exercised while Joey napped. Then he stopped napping. Then I’d push him in a stroller. Sometimes he would cooperate and sometimes he would not. I tried going to a gym and leaving Joey in the child care area. He cried the entire time. For awhile after Danny was born, I would exercise while Joey played and Danny slept. And for a long time, I’d push them together in a double stroller. Now Joey is too big for the double stroller. And Danny doesn’t seem to like strollers at all.
Since cancer arrived in my life, exercise has not been a priority — I just could not physically do it. But for the the past two weeks, I have been walking while Danny naps and Joey watches a 30-minute library video. While he learns about snakes and alligators, I sweat and hope like crazy that I can finish before he becomes impatient. It works for now. But everything changes and this will not last forever.
I am not sure what my long-term exercise plan will be. I guess I have to think in the short term, lower my expectations, and try to do what I can each day. This is hard for me — I like a plan and a routine and somehow, motherhood (and cancer) don’t always allow for structure.
I just finished walking on my treadmill — 3 miles. Danny is napping and John and Joey are at the movies. That works — for today.
Today I learned that my CA 125 test was negative. That means that there is no indication that I have ovarian cancer. But because I have breast cancer and the two are cancers are linked, I will continue to be screened for both. I also learned that Friday will be my last day of radiation. It was scheduled to end on Tuesday, May 31st but my radiation oncologist thought I could end on Friday and not come back after the Memorial Day holiday. She will adjust my treatment doses so that I get what I need this week. Four more days.
My real peace of mind came today from a discussion I had with my radiation oncologist. She is a well-respected doctor and has been highly recommended by many. So I have been interested in her opinion about my chemotherapy treatment but have been afraid to ask her. Since I’ve had two different opinions (one to continue with chemo and one to stop), I was scared she would say I should continue. I do not want to continue and do not think my body could even tolerate the treatment. But I still second-guess myself and have had some dark moments contemplating whether or not I cut myself short on treatment. This oncologist said I did not. She agreed that I should not have received Taxol, the drug I refused. Like others, she said the benefit would be so small and the toxicity could be so great. She said she would not have done it herself. And she said if I do have a recurrence of cancer, it will not be because I didn’t receive Taxol. This brings me great peace.
I hope to gain more peace of mind with my therapy — which begins tomorrow.
I have seven more radiation treatments — the end is near. My remaining treatments are “boosts” and are quicker than my previous treatments. I do not have to use the breathing device and this time, a machine moves very close to the tumor site and zaps the area for about 30 seconds. Then I’m done. For this entire radiation process, it has taken me longer to drive to and from the hospital than to receive the treatment. The treatments have been very short — and I rarely have to wait. It’s a smooth system. With the boosts, it’s even quicker. Today I dropped my boys with my mom at 9:45 AM. After radiation and a quick stop at the grocery store, I was back for them at 11:00 AM. And what followed was the best part of the day — we visited the preschool that Joey will attend beginning June 6th (he got to meet his teacher, play on the playground, and see his classroom). Then we went strawberry picking. On the ride home, Joey said, “Don’t you love that we got to pick strawberries?” I told him, “yes, I do” and realized that soon my life will be back to normal — free of treatment and fatigue and full of family fun and one day — a head full of hair.
Today I had another radiation simulation. This time the therapists readjusted my set-up to prepare me for my “boost” treatments which will begin on Thursday. I have green markings on my body which will line me up with the radiation machine in a new and different way. The boost treatments will only treat my “tumor bed” — the location of my tumor. Currently, my tumor bed and entire breast and surrounding tissue are being treated. But the tumor bed is where a recurrence is likely to occur (if it occurs) so this area gets an extra dose of radiation.
So Thursday begins the boost treatment and the last boost will be given on May 31st. This will be my last day of radiation and will mark the end of my treatment. I won’t be finished with medical stuff, though. I will see my oncologist every three months for the next year and I will have my port flushed every month (it will stay in for one year in the event of a recurrence that would require additional chemo). I will attend therapy sessions and physical therapy sessions too. And I have an infection in my affected breast right now that may send me back to the surgeon once radiation is complete. Apparently, infection sometimes occurs and is related to the surgery. I have been taking an antibiotic for one week but there is no improvement yet. But depsite my occasional medical appointments, I am almost free of the burden of regular and on-going treatment.
My treatment will end exactly six months (and a few days ) after I discovered my lump. It will also end one day after Danny turns two years old. There are odd coincidences in this journey. On Joey’s fourth birthday, I met with my oncologist and learned about my treatment plan. On Danny’s birthday, I will be one day away from completing the treatment plan. The journey usually somehow takes me back to my kids — the two little ones who give me perspective.
I have been having trouble holding my breath during radiation. In order to activate each dose of radiation, I take a deep breath through a tube in my mouth (and with a plugged nose). This breath triggers a “click” sound and then I hear a “beep” that lasts up to 15 seconds. I have about six total doses each day and at least twice I have to hold my breath for 15 seconds. On the other doses, it’s less. It’s gotten harder and harder to last for 15 seconds and it’s not clear why this is happening. I’ve reported it to the doctor but since I am not having a shortness of breath in my everyday life, it doesn’t seem to point to a problem. Yesterday and today, the issue became more complicated. Yesterday I could hardly breath deep enough to trigger the “click.” With extra effort and every ounce of energy in my body, I finally did it. But today I could not do it at all. I thought maybe my lungs were failing me. Fortunately, before concluding that it was me with the problem, my radiation therapists called in their physicists who made some changes on my machine and with my tubing. With a new tube, I could breath! The problem may have been just a leak in the tube where my breath was escaping before I could “click” the machine on. A relief.
So my mind runs wild. I have trouble breathing for radiation and I think it’s a problem with my lungs. Headaches — something serious in my brain. Pressure in my stomach — ovarian cancer. A lump on my leg — a tumor. None of these are likely but it’s the first step in my thought process. I am able to dismiss these worries with time but not without an irrational venture in my mind. Which is one of the reasons I will soon begin therapy.
I met with a psychologist and two psychology student/interns today. Shands is a teaching hospital so there is always a team of doctors who see me. One of the students did an intake session with me. I told her my whole story and answered her questions while the doctor and other student observed from another room. After my intake, the three met and developed recommendations for me. Then the presented them to me. They recommend I take the anti-depressant medication (Zoloft) prescribed by my oncologist and begin therapy to last for 6-10 sessions. The therapy will be structured and will include some relaxation techniques. The doctor believes this will help me greatly — especially since I have a perfectionist personality. It seems perfectionists are prone to anxiety under normal circumstances. With a cancer diagnosis on top of my propensity for anxiety, it’s not a shock that I am anxious, worried, and somewhat depressed.
I will begin therapy in the next week or so and will go once per week until I feel more at ease with life. That’s my goal — to live and breath easily.
My hair is growing back. It’s a little longer than stubble now — and it’s dark! I can see traces of blond hair in the mix but I don’t know if it will be enough to overpower the dark. I’m not sure when I will be comfortable enough with my short hair to show it in public. I think I’m waiting for a time when people will not look and stare. I don’t know why this bothers me — I’m comfortable in my own home with my baldish head — but I guess I don’t want to appear like a victim of chemo. Which I am. So maybe I should be proud and bold with my head. But I’m not.
I am also a victim of radiation. My skin is starting to look sunburned. It’s very mild but it’s there. It looks a bit like my skin looks after a hot shower — pinkish in color.
I’ve completed four weeks of radiation treatment and have a few more weeks to go. With each day that my breast tissue and skin is attacked, my hair grows in more and more. Part of my body is weakened but part is strong. An interesting balance.
I am overcome with emotion and fatigue. Today I had five medical appointments. First, I had my port flushed. This has to be done once every four to six weeks when the port is not used regularly. My port gets accessed with a needle and saline and a blood thinner are flushed through the line to keep it clean and clear.
Second, I met with my oncologist who told me he thinks having my breasts and ovaries removed at this time is a radical approach. He thinks I should give myself some time to think things over and to live life a bit after treatment. Perhaps my worry will subside when life becomes normal again. He also recommended that I take an anti-depressant for a few months to ease my mind. I’m thinking about it. I really don’t like taking drugs. But my doctor says sometimes cancer patients need to clear their minds — and this helps. He says some describe the effect of the drug as bringing them out of a dark room and into the sunlight. I’ve filled the prescription and it sits on my kitchen counter. Another decision.
Third, I went for my 16th radiation treatment and learned that I will have 12 more of what I’ve been receiving and then will get 10 “boost” treatments. After radiation and fourth, I met with a radiation oncologist — this happens once per week to monitor my skin and any other side effects. So far, my skin is not affected. My side effect is fatigue — which today seems to have tripled with my busy schedule.
For a break, I met John, Joey, Danny, my mom, and Jordan for a quick and hectic lunch. Then I dropped off a prescription and went to get my arm fitted for a lymphedema sleeve (to help with swelling due to lymph node removal).
Fifth, I met with my OB/GYN to talk about ovaries. He did an ultrasound and pelvic exam and like popular opinion, told me screening for ovarian cancer is not very effective. But from what he could see, my ovaries look fine. He told me they are not fully functioning due to chemo-induced menopause but he saw signs that they may return to full function. If they do not, he says there is no need to keep them and I could have them removed. But until he knows of my true menopausal state — which could take up to one year — he does not recommend removing them. There is no evidence that I will get ovarian cancer at this time. I will still have the CA 125 test done to see if there is any elevation in levels that detect ovarian cancer — but this too can be deceiving.
For the near future, I will continue my treatment without making any big decisions. For today, I think I will put the topic of cancer to rest.
My genetic test is negative. That means I do not have a genetic mutation that caused my breast cancer and that my sister and children likely do not have a defective gene. It does mean I now have no idea why I got breast cancer. It could be sporadic or it could be familial (a family connection that cannot really be traced). This will remain an unknown.
The negative result is good news. But it leaves me a bit confused and lost. Had the test been positive, I knew what I would do — remove both breasts and ovaries too. Doing so would give me a 90% chance of not getting cancer in these two areas. Without the surgeries and with a positive test, there is a 60-80% chance of getting these cancers. With my negative test, my chances are not so high — but there is still a chance. And since I am young, I have many years to have a recurrence or a new cancer. To still remove my breasts and ovaries would give me that same 90% outcome, with other implications (two major surgeries and possible breast reconstruction, early menopause and many years of bone loss, no more children, etc.). I am a worrier so perhaps these surgeries would give me peace of mind. Perhaps this is a radical approach and I will be fine as is. So goes my next personal debate.
I will meet with my OB/GYN on Monday for some screening to look at my ovaries. I will have a pelvic exam, an ultrasound, and a test called CA 125. This is the only screening test used to diagnose ovarian cancer — and it’s not very good. There are many false positives and negatives which make it inaccurate. But it’s the only real tool available. So I will have this test done and see what comes of it. Unfortunately, ovarian cancer is typically caught late (in stage three or four) because of poor screening. Many women find out they have it because they start to feel symptoms. A reason to have my ovaries removed, maybe. Removing the ovaries also cuts down the risk of breast cancer since breast cancer can be fueled by hormones and hormones come from ovaries. Breast cancer is easier to screen — with self-exams, mammogram, and ultrasound — but even if caught early, like mine was, the journey is still cumbersome.
My plan for now is to talk with my oncologist, my OB/GYN, a psychologist, and a woman I just learned of who had her breasts and ovaries removed. She is in her 30s also and decided to have these surgeries as a prophylactic measure. Just as she opted for the surgeries, I know many women go on to live full and healthy lives after breast cancer — with their breasts and ovaries in place. It’s a personal choice. I just don’t know yet what my choice will be.