This is a great piece from a fellow blogger- Nancy Stordahl-who’s been at this a lot longer and is a lot better at it than me. Please give it a read and check out her blog.
This is a great piece from a fellow blogger- Nancy Stordahl-who’s been at this a lot longer and is a lot better at it than me. Please give it a read and check out her blog.
Someone recently asked what October means to me. October meaning Pinktober, Breast Cancer Awareness Month, etc. In all honesty it means something different today than it did three years ago when I was diagnosed with Stage III Breast Cancer. When I was first diagnosed, the pink movement was comforting to me. I was part of a tribe of women like me, diagnosed with breast cancer and we were sick but we were also wrapped in pink, pretty in pink. I was not alone. But slowly I began to realize how much people outside my pink breast cancer world did not know about this disease, how much I did not know about this disease (even though my mother had been diagnosed 15 years earlier). Every October the pink ribbon campaign pops up and there are cutesy slogans on merchandise everywhere like “Save the Tatas” and “Be Aware, Save a Pair” ad nauseam. Some of them are cute and funny, and really if it makes someone look at it and think “yeah I’m late for my mammo” or that they need to remind their mom, daughter, friend, or sister to get their well woman check-up and mammogram, then it’s working. I actually have a shirt that I love:
Awareness aside, not all of the pink merchandise actually benefits breast cancer research or the women (and men) that breast cancer touches. If you are going to purchase breast cancer paraphernalia please check to see whether the proceeds actually go to something worthwhile and not just to line the pockets of people capitalizing on our misfortune. I’m not saying don’t ever buy that cute little sparkly pink keychain or the graphic tee with the cool slogan unless you can verify where the proceeds end up, but don’t assume because it features breast cancer that the money goes to an actual charity. There are excellent organizations out there such as Metavivor, Living Beyond Breast Cancer, and The Breast Cancer Research Foundation that rank high with Charitynavigator.org.
I see a lot of women say they hate pink and will never wear it and will never embrace it. That’s fine. You gotta do you. I don’t hate it, but I don’t see it as a beacon of hope like I once did. Now I see it more as a symbol of camaraderie, something that connects us as kick-ass fighters and survivors. No color can cure a disease, but assigning colors helps differentiate types of cancer and spread awareness. Wearing it isn’t enough though, we must educate and by educate, I don’t just mean reminding women to get their mammograms and perform self-checks. That is all well and good but we must explain to the world that although mammograms are important, they are not foolproof. Mammograms do not always reveal cancer, especially in women with dense breasts as was the case with me. It is imperative to pay attention to your body and talk to your doctor about ANY changes. We must also inform the world about how invasive breast cancer has no cure. There is treatment, yes, but the best that we can hope for is having No Evidence of Disease or “NED” which is the technical term in breast oncology. We are never cancer free until we die of something else. Despite undergoing every possible treatment, invasive and sometimes non-invasive breast cancer can and does return, in a year, or five years, or twenty years. Think about Olivia Newton-John. This is her third time facing this beast in more than twenty years. We are all literally walking time bombs with a pink monkey on our backs. I don’t say this because we need sympathy. I say this because we need everyone to understand that just because treatment ends, we still suffer through crap. We worry about recurrence. We have anxiety. We have temporary and permanent side effects from the treatment and from our maintenance drugs. I will tell you that the maintenance drug I am on for ten years makes me feel 90 years old. It gives me wicked hot-flashes that make me want to freeze my head. It makes me so constipated I poop tiny rabbit pellets. As a result of my surgeries, my chest is 90% numb. My left triceps is completely numb. I get phantom itches I cannot scratch that I refer to as the “itches of ghost boobs past.” I have neuropathy in my hands and feet from chemotherapy. God forbid I lay on my hand for more than thirty seconds it will take me five minutes to shake it back to life. Then there are the scars. I have two scars across my chest from my bilateral mastectomy. I have scars in my armpits where lymph nodes were removed. I have an oval scar on my left foob and a horizontal scar on my back from my reconstruction surgeries. I have a two inch scar on my upper right chest from my chemotherapy port-a-cath insertion. Don’t get me wrong-I am super proud of my scars because to me they are a symbol of strength. But they are also daily reminders of what has happened and what can still happen.
So for me, Pinktober is two-pronged. It’s spreading awareness to get screened and perform self-exams, and more importantly it is awareness of metastatic breast cancer (MBC), also known as Stage IV, because many women with metastatic breast cancer began this craptastic journey with an early stage diagnosis, described as “highly treatable”. In fact according to the Metastatic Breast Cancer Network (MBCN), at least20% of patients were initially diagnosed at an early stage, and some estimate that figure could actually be as high as 30%. But you know what? Also according to MBCN,“there are currently massive gaps in how people with metastatic breast cancer are counted–our cancer registries don’t track metastatic recurrences–something MBCN and its fellow MBC Alliance members are trying to change.” Here is a Metastatic Breast Cancer For Dummies lesson. You get diagnosed with breast cancer in your boob (because you were the unlucky 1 in 8), and then it spreads to your lymph nodes. Through the lymphatic system or bloodstream the cancer travels to distant organs like your bones, brain, lungs, ovaries, liver, peritoneum, colon, skin, and/or a plethora of other locations, many times undetected. I recently read about a women who had metastatic breast cancer (mets) to her eye. Her EYE y’all. These women do not have eye cancer, lung cancer or brain cancer. They have metastatic breast cancer. Once it goes into other organs, there is treatment that may or may not work and if it does work, may stop working. But there is NO cure. Each diagnosis and prognosis is different depending on way too many factors to list. I know ladies with MBC who have been thriving for 10-20 years. But that is not the norm. The American Cancer Society states that the five year survival rate after a Stage IV breast cancer diagnosis is 22 percent. No amount of pink anything is going to change that. It is going to take research and research requires funding. According to MBCN and Metavivor.org only 2-5% of cancer research funds are spent on metastases, yet it kills 90% of all breast cancer patients. Another reason to donate to Metavivor. This Pinktober I will embrace the Pink but I will get up in your grill about awareness. I will tell you that 1 in 8 is TOO MANY. I will tell you Breast Cancer isn’t pretty in pink. It’s scars, it’s sadness, it’s terrifying and too often it’s death. So by all means #ThinkPink but also spread the word #StageIVNeedsMore.
In the last couple of months there have been stories splashed all over the media about a recent federally funded study that found chemotherapy showed no benefit in certain breast cancer patients. We saw the “70% of the most common type of breast cancer” headlines everywhere. Is this good news? Absolutely. But there are many different types of breast cancer. Most people outside the breast cancer community do not know this. I didn’t prior to my own diagnosis. I wish more of the news outlets would not have left out details for the sake of a sound bite. What they are referring to is the Trial Assigning Individualized Options for Treatment (Rx), or TAILORx trial which found that those breast cancer patients who are early stage, i.e. 1 or 2, axillary lymph node–negative, estrogen and progesterone positive, and HER2 negative, may not benefit from chemotherapy, as previously thought. These are women who had an intermediate Oncotype (Oncotype DX Breast Recurrence Score) which assesses the expression of 21 genes associated with breast cancer recurrence to assign women with early-stage, HR-positive, HER2-negative, axillary lymph node–negative breast cancer to the most appropriate and effective post-operative treatment. These were the women on the borderline and this trial made the choice for or against chemotherapy much easier, really a slam dunk. For these women this is great news, important news. But where is the good news for the later stage and stage IV patients? From metavivor.org:
In the United States, someone dies from breast cancer every 14 minutes. This number has not decreased significantly in nearly 40 years despite a huge movement to raise awareness and funds for breast cancer research. Just wearing, buying, or even walking for “pink” does not reduce deaths from breast cancer. Scientists know that research specifically focused on metastasis is crucial to significantly reduce the breast cancer mortality rate. Metastasis research is challenging for various reasons. However, the biggest obstacle is lack of funding: only an estimated 2-5% of the funds raised for breast cancer research is spent on studies of metastasis.
Each year, 200,000 Americans are diagnosed with breast cancer. Six to ten percent of these diagnoses are metastatic, or stage 4. Another 30% progress from stages 0, 1, 2 and 3 to develop stage 4 – maybe immediately, maybe 30 years down the line. Science has very few answers to the reason why cancer metastasizes and we don’t yet have an effective treatment to arrest metastatic growth. What we do know is that a diagnosis of Stage 4 breast cancer is not considered survivable and that almost 40,000 men and women die of it each year.
2-5% of research funds is spent on studying Metastatic Breast Cancer or MBC. That is obnoxious. I am not a pink-hater. I think the pink movement is important and necessary, but what angers me is that too many companies and consumers buy into the pinkwashing movement and don’t understand where the money is actually going. Awareness is important but so is NOT DYING.
So when we talk about the TAILORx study I realize that those outside the breast cancer world likely have no idea what I’m talking about. And they would also see the 70% figure and think okay, so 70% of breast cancer patients do not need chemotherapy now. WRONG. 70% of the most common type implies 30% of those that fall into that lucky group will not benefit and then you have all the other patients who do not fall into that category at all. It’s almost like saying “if you are right handed with medium sized fingernails and wear a ring size of 6-8” you will qualify. That might apply to most women but think about how many it doesn’t. I do not want your eyes to glaze over but here is a quick primer on breast cancer. First, below are the different types.
Breast cancer is further divided into hormone receptor and HER2 Neu categories. What I mean by this is a tumor is either estrogen/progesterone positive or negative to varying degrees. HER2 Neu is a gene that produces a protein which acts as a receptor on the surface of cells. These receptors are very sensitive to hormonal/chemical ‘growth’ signals in the body and are therefore growth factors. If the cancer tumor cells have more of these HER2 proteins than normal, that means those cells are receiving more ‘messages’ to grow and divide than normal cells. It is aggressive.
Beyond these factors, breast cancer tumors are also given a grade, either 1, 2 or 3 (3 being the fastest growing). Tumor Grade indicates what the cells look like and gives an idea of how quickly the cancer may grow and spread. Grading for non-invasive breast cancers such as ductal carcinoma in situ (DCIS) is different, and is defined as low, medium or high grade rather than 1, 2, or 3. Generally speaking, the higher the grade of tumor, the poorer the prognosis.
The last category I am going to cover is stage. With breast cancer there are stages I through IV – IV being metastatic breast cancer which is breast cancer that has spread to other parts of the body. This means if breast cancer has spread to your lungs or bones, it is still breast cancer, not lung or bone cancer. Within stages I and II there are sub stages A and B. With stage III there are sub stages A, B and C.
So now let’s revisit the study. It helps “early-stage, HR-positive, HER2-negative, axillary lymph node negative” breast cancer only. Many breast cancer patients are left out of that specific group, including me as I was Stage III. While the study bears promise for those who fit that specific criteria and I am in no way trying to downplay it’s importance, we cannot sit on our laurels and tell ourselves that nobody needs chemo anymore. Plenty of us still need chemotherapy. We also must not forget about the ladies living with Stage IV who are often on maintenance chemotherapy for the rest of their lives. We call them survivors and thrivers and IT IS TIME FOR A CURE because they are the ones dying.
Sources: National Cancer Institute, American Cancer Society, Metavivor.Org
I came across this article and it’s one of the best things to be read on this topic.
Here is a podcast interview I did recently for I’m Taking Charge.
Guest blog for Breast Cancer Sisters, a re-boot of Boobless in New Jersey.
You guys, my cancerversary is today.
April 15, 2015 was a Wednesday. It was also my day off. My husband was on a mountain in Nepal and off the grid. My 12 year old daughter was at school. I’d been expecting the call from the radiologist and around noon it came. Breast cancer. She suggested I call my PCP and get the name of a breast surgeon. I thanked her and was about to hang up when she said “don’t you want to know what type it is?” Type? There are types? “Um, yeah I guess I do.” “Invasive Lobular Carcinoma.” I wrote it down and stared at it. I said “Well fuck me.” I didn’t cry, I’d been sobbing privately in the days leading up to this call. I expected it. The radiologist had said it looked very concerning during my ultrasound. What to do? Who to call? I have no family to speak of. My husband was on a mountain in Nepal. My in-laws live in Europe. I e-mailed a few close friends who knew what was going on. I hid it from my daughter. I felt so completely isolated and alone. Hopeless. All I could think about was leaving my daughter without her mommy. What had I done to deserve this? Promises to God I hadn’t kept?
Well my husband came home a week later and I told him. He was very circumspect and positive. We met with the doctors and with a treatment plan in place I began kicking ass and taking names. Three years, a Stage 3 breast cancer diagnosis, a few surgeries, four rounds of chemotherapy, 33 rounds of radiation and two estrogen blockers later I’m still here to tell the tale. And despite the scars both inside and out, despite all the crap I’ve had to endure, I’ve come out the other side and I’m a better person for having done so. I love every day, and yes I have some lingering effects like occasional neuropathy and chemo brain. I have sleepiness that borders on narcolepsy, joint stiffness and poop that resembles rabbit pellets, all from taking letrozole. But I’m alive. On that shitty day three years ago I could not imagine ever feeling happy or hopeful again, so if you are just starting your fight or currently embattled, it will get better. It did for me.
I may stir up trouble with this topic but I feel like it’s time to talk about it. I lost my oncologist recently when HealthNet changed network providers from Dignity Health to Banner. HealthNet had previously approved my continuity of care but they are not going to keep doing it. I’ve been told to “transition to an in-network provider.” So I have to give up the doctor I’ve had for three years, who has seen me through one of the darkest moments of my life. I guess it could be worse, this could’ve happened during chemotherapy or radiation. It’s disappointing but unavoidable. I need an in-network oncologist. For those who don’t know, I work part time and am not insured by my employer. I hold an individual policy through the ACA Marketplace. My husband is self-employed and has his own policy, as does our daughter. I could choose to work full time and qualify for employer sponsored benefits where the network is huge and I could likely see any doctor I want, but I do not want to work full time. I also don’t want my medical insurance dependent upon my job situation. It’s sticky because you may have a gap in coverage and need Cobra. Right now I work four days per week and I feel that gives me some balance. I have time to run errands and schedule appointments on my weekday off, leaving the weekend to spend with my family. So, if losing my doctor is what happens I’m not happy but it’s the price I pay for my choice to work part time. What I will be unhappy about, is if the ACA gets fully repealed, something isn’t figured out, and I lose my pre-existing condition protection. This provision along with the ability for parents to carry their college aged kids under their policy was a beacon of light in an otherwise black hole of regulations and dwindling insurance providers. What many people do not understand about the ACA is that prior to its inception, anyone not participating in an employer based insurance based plan who had a pre-existing condition could be denied coverage of said condition, or denied coverage completely.
See, until I was a stay at home mom many moons ago, I never knew that people who carried individual health insurance policies were not subject to pre-existing condition protections. My first ever diagnosis of a pre-existing condition was hypothyroidism at the age of 36, which was found during routine bloodwork (and which also revealed I was pregnant!) I quit my job and became a stay at home mom. I had a broker who set me up with an individual insurance policy since my husband was self-employed and also had an individual policy. I began to see an endocrinologist for treatment. I received the first bill and an EOB stating anything to do with my thyroid issue would not be covered. Excuse me, huh? I have insurance! I called my broker and basically said “what the fuck is this shit!? It’s always been covered before?” She explained that because I had an individual policy now, pre-existing conditions could be excluded from coverage and that when I had employer based insurance, they could not. So paying for thyroid related issues was not a huge deal, a few hundred bucks. Eventually I went back to work full time and had insurance at work and it was now covered. After a few years I decided I wanted to reduce my hours, work about 4 days, 30 hours per week. When the ACA went into effect, the pre-existing mandate was put into place. No more could insurance companies block you if you had a pre-existing condition. Not only that, but insurance companies could not dig up every single medical record from the time you were born and drag you through the underwriting process which truly resembled a full body cavity search and Spanish inquisition. Trust me, I know. When I quit working to stay at home with my baby, I was the picture of health and I got call after call from the insurance company asking me to explain my medical records. They even had things that never pertained to me and doctors I never saw. It was a huge clusterfuck. This changed with the ACA. No longer could insurance companies discriminate. Obviously we all paid a price for this boon with increased premiums, increased deductibles and increased out of pocket maximums. My premium (just for me) has skyrocketed since the ACA came to be, going from $242/month to $730/month. I figure okay, what can you do? It is what it is, and there is ONE choice for health insurance in the individual market in my county (the largest county in Arizona). Costs were supposed to go down, and I was supposed to be able to keep my doctor. Well in my case, the opposite of both those things happened. I’m not super pissed about paying $730 per month because prior to the ACA I could’ve been really up shit creek with my breast cancer diagnosis in 2015. A lot of my conservative friends want to see the ACA completely repealed and let me tell you right now, that would absolutely fuck me up ten ways from Sunday. Surgeries, chemotherapy and radiation costs for me would’ve been in the high six to seven figures. And that’s factoring in a possible discounted price to match what would be charged to providers. My liberal friends want single-payer universal healthcare. I’m not sure that would shake out very well either. Socialized medicine has its own set of problems.
I consider myself to me fairly libertarian on most issues. I think I am pretty sensible. One of my first legal jobs was working for a bankruptcy trustee. We like to look at people who file bankruptcy as lazy slackers who spend too much, run up their credit cards and/or who are just all around irresponsible jackoffs but that is truly not always the case. Yes, I saw many people who just couldn’t manage their money and bought houses and cars they could not afford. But I also saw firsthand, so many people who were bankrupted simply by medical bills. People who worked hard who understandably could not afford six and yes, even seven figure medical bills. Many of these people paid their monthly premiums but because they held an individual plan, they had treatment that was denied coverage because it was due to a pre-existing condition. Here are some of the people who fall into this category:
Stay at home parents whose spouse cannot cover them
And before y’all start yapping about Medicaid and low-income benefits-my husband and I are not low income and do not qualify for any ACA subsidies. But we are not wealthy either. We are middle-class. We can’t pay six and seven figure medical bills. I am not asking for anyone to pay my way but those of us who fall into any of the above categories should, like anyone else who gets their insurance at work, be able to purchase insurance that covers pre-existing conditions. Nobody should go bankrupt or lose their life’s savings because they have an illness that an insurer refuses to cover. Yes that’s my opinion and feel free to disagree. I believe in personal responsibility and accountability. I am dubious about many things the government wants to “take over”. Just about everything they do costs more, takes longer to accomplish and is usually screwed up. It is a swamp. So maybe it means opening up markets and allowing customers to purchase insurance across state lines. Maybe it means allowing people to have portability if they change jobs. Maybe ultimately this gets us towards something resembling single-payer and I am well aware of all the arguments against that and many are valid. I don’t know, smarter people than me are going to have to come up with the answer. So far neither political party has shown ANY ability to come up with a solution. I’m looking at you congress-the same assholes who enjoy the Rolls Royce of health insurance who don’t seem to give a shit about solving anything that truly matters to the constituents.
Nobody wants to see themselves or a hardworking friend or loved one lose everything they’ve worked their whole life for, because they got sick. Does someone who wants to carry insurance and is willing to pay for it deserve to be shut out of the process, just because they work less than 40 hours per week or are an independent contractor? Or how about the stay at home mom or dad whose spouse does not have the option to cover them? And remember, I’m not talking about freebies here. I’m talking about access to an insurance policy that will cover me if God forbid my cancer returns. So maybe congress, you can get with the program and quit crying about Stormy Daniels and wall-building long enough to fix this shit.
This week I had my four month oncologist appointment. The days leading up to this are always a mixed bag but usually it’s terrifying. As I get further away from the end of my active breast cancer treatment it has gotten easier but there is still a crazy amount of anxiety and depression for a few days as I anticipate this appointment. I don’t know that it will ever go away completely. During this time, my mind will form very specific visions. I think everyone thinks about death and dying at some point but in my case I can say it was always a bit removed from reality. It was a day far in the future. You know logically that someday you will die and you wonder how it might happen but it’s not tangible. Since my cancer diagnosis my thoughts about death are quite detailed and specific. As I was getting ready for this appointment this past Wednesday, I was looking around the room with a blank stare and all of a sudden I pictured myself in the hospital, dying, saying goodbye. My husband and daughter coming home afterwards. I know it sounds morbidly dramatic but I just couldn’t help it. I wondered how they would feel walking into the house we’ve lived in for 14 years since my daughter was a baby, knowing I never would again. I pictured my daughter not having me to consult and confide in, considering all the questions she’s going to have in the years to come that I won’t be able to answer for her. I tried to imagine my family going about their daily lives with me not there. What about my dog and my cats? Just thinking about my pets wondering if I was coming home made me verklempt. So, I turned the radio on to clear my mind, got my big girl pants on, danced around the room for a bit, and took my melodramatic ass to the appointment.
How on earth did I all of a sudden bring myself to this dreary and emotional place? I have been trying to live my life to the absolute fullest. I am proud of myself for not letting cancer rule my life. But approaching this appointment triggers very real fear and trepidation. And here’s the kicker, there is really no way to know if my cancer is returning. My oncologist will look for abnormalities in my labs and perform a physical exam, but the cancer can still be there undetected. But if there is no sign of cancer then it’s like no news is good news. Thankfully this time, he said there is still no evidence of disease. I released the breath I had been holding for three days. Since my diagnosis in 2015, I have been seeing him every four months or sooner. Now he says I can some back in 6 or 7 months. Part of me is happy, but part of me is nervous. Seeing him just twice a year now means he thinks I’m doing well and is reducing my follow up-which is a good thing. But seeing him every four months gives me comfort and allows me to imagine more=better, but intellectually I know that is not the case.
So until I get ready for my next appointment 6 months from now, I will live my life and appreciate all the beautiful things I am blessed with. I will push all morbid thoughts of death OUT of my brain. Death is part of life but not today.
Ah yes, I’m still here. Even though I’m mostly done with active treatment and reconstruction (other than the pills that make me feel like I’m 90 years old and someone at work just asked me why am I limping…), I have more to discuss because breast cancer isn’t over. There are so many articles and posts about what not to say to breast cancer patients and/or survivors. I agree with most, not all. Usually the list of things that are a no-no are super obvious, like “you get a free boob job.” Seriously, people actually think that. It’s important to let the world know what types of comments are helpful or hurtful, but I want to take this idea one step further and let outsiders (not-diagnosed-with-cancer-people) know what we are feeling and will continue to feel for quite some time. I see new survivors feeling lost and alone instead of victorious. Maybe sharing the post-treatment struggle can enlighten the masses.
What I want to talk about is what happens after, once active treatment ends and you ring the bell, hold up the sign, or the fat lady sings. I see it over and over again in my social media cancer groups. People outside our world say “great, you’re all done! Now you don’t need to ever think or talk about cancer again and let’s go hike Camelback Mountain because you’re up for that now, right?” But for us, when all is said and done, i.e. surgeries, chemo, radiation, etc., it’s really not all said and done. What we are left with are shells of our former selves. Our hair is starting to grow back. It’s not cool, edgy, rock the bald anymore; it’s like male pattern baldness. I used to say mine looked like Bobby Hill from King of the Hill. Our eyebrows and eyelashes may or may not be growing back. Some of us gained weight during treatment, although there is a huge misconception out there that chemotherapy should make us look like starving children in Africa. Chemo brain, although not as acute, lingers just enough to make us feel like we have early onset Alzheimer’s. We will be suffering from the side effects of treatment for a year, or many years, or forever. If you are diagnosed with Stage IV or Metastatic Breast Cancer (MBC), treatment never ends, until your life ends, however long that may be. For some, that may be 2 years, for some it’s decades. We have scars like a roadmap. Beyond the physical pain is the mental and emotional anguish. We have PTSD. Yes that’s a thing with surviving cancer. Our world has been doctors, nurses, radiation technicians, phlebotomists, medical procedures and hospitals for a long-ass time. As much as we hate having cancer and going through treatment, when we are there it’s like we are safe. We feel confident nothing bad will happen to us once we walk through those doors. We are checking in to fight. Our nurses and techs have become our friends and our family. Then one day, we’re all done. Out through the doors we go, into the big scary world we used to navigate mostly without effort but now we do so without the security blanket of our medical team, and without any real knowledge of what’s to come, or what we can expect. We’ve had our safety net ripped away. We are different people. We are not the same confident women we were before breast cancer. We will likely regain this confidence, but not yet. We have probably lost friends and relationships along the way because cancer was too scary, or they were generally selfish people and couldn’t handle that this cancer wasn’t all about them. I see the term “this is our new normal” bandied about all the time. Truer words could not be said.
We have changed in so many ways. In my case, I truly believe I am a better person but it took quite some time to feel that way. Most of us are petrified because breast cancer can and does return in many cases. It’s not like some other cancers or illnesses where you get treatment and then you’re cured. We may have no evidence of disease at the moment but that could change at any time. It’s true nobody knows what the future holds. Anyone can be killed just crossing the street or choking on a sandwich but we breast cancer survivors have a target on our backs and we have to learn to go about our lives and cope with that. We don’t want special treatment, just understanding and awareness that as much as we would like to, we can’t just bounce back into our lives. It will take time. Please be patient. To us, a simple step forward may look like this.
It actually felt like my hair was a tortoise the way it grew back. It actually came back fairly quickly but it felt like FOREVER. Especially for the hair on my temples. For those just entering this phase of their cancer treatment here is what my hair journey looked like. As I’ve frequently said in the past, losing my hair wasn’t nearly as traumatic as I anticipated. I’m not going to over analyze it but all I can think of is that I’ve always been very adventurous with my hair with color, length and style. I’ve cut my hair from the middle of my back into a chin length bob without a hiccup. Dyed it from blonde to chestnut brown. Maybe my mind looked at it as another style choice. I’ve had it down to my butt as a kid and in a Jamie Curtis pixie (long before cancer). One thing I noticed as my hair started regrowing was that IT. WAS. GRAY. Yup, I don’t know what I was expecting at 49 but it wasn’t that. Also the new hair after chemo was curly and baby fine. My pre-chemo hair had a slight wave if I scrunched it but the chemo curls were pretty cool. As most of my pink sisters are trying to grow back their long locks, I found that I like my hair short and I’m not sure I’ll ever want it long again. Priorities – 20 minutes extra to lay in bed. I’m also loving it red. It’s been blonde for the past 10 years or so but I like this change. It’s a new me across the board.
Exactly two years, nine months and four days after my initial diagnosis of Stage 3 breast cancer, I finally had the final procedure to complete my reconstruction. I got my 3D nipple tattoos. They look pretty good, especially considering I can still go without a bra but there isn’t a blank slate when I look down. They will lighten up to reveal more of the 3D effect over the next few weeks. Right now, they kind of look like little pepperonis. The other option other than going nip-less or the 3D tattooing is nipple reconstruction surgery (which I’ve touched on in the past.) There are a couple of different ways this can be done. The Boob Whisperer uses the skin from the reconstructed breasts to form a nipple. I’ve also seen where some plastic surgeons use a donor site, like the inner thigh. The reconstructed nipple, once healed, is then tattooed with nip-colored pigment to resemble a real nipple. Since I favor going braless but still wanted that finishing touch, I got the 3D tats. Also, as I have previously stated, reconstructed nips have no sensation. In fact, 80% of my left breast, and about 50% of my right, is numb, so what’s the point? If they aren’t going to actually work then it’s a hard pass from me. I know lots of ladies want them and they look very nice, it just didn’t make sense for me.
At my last appointment at The Boob Whisperer, I asked to see my initial photos. The ones with the cancer boob. Looking at the photo you can totally see something is wrong so I’m not sure why it took me so long to notice. I’ve learned though that Monday morning quarterbacking and what iffing doesn’t solve anything. This is the path I was meant to be on. I believe in fate and that God has his reasons for putting me here. Finishing this part of the journey is bittersweet. It’s always hard to let go of a doctor who has seen you through so many ups and downs. I’m hoping now that I will just have my oncologist every four to six months. And speaking of my oncologist, a few weeks back I talked about how my insurance company, HealthNet, was dropping Dignity Health from their network. This meant my oncologist would now be out of network. Well, miraculously, HealthNet approved my continuity of care request so I can continue seeing my oncologist at in-network cost. They only approve these for a few months at a time so in April I will need to reapply, but I am just thankful I don’t need to start over with a new doctor. Now, if God forbid I have a reoccurrence, I’m not sure HealthNet will approve treatment where I had it before, University of Arizona Cancer Center, because it’s part of Dignity Health. At that point I would likely need to change doctors but I am in no way going to start borrowing trouble and worrying about what ifs. Now I will enjoy finishing this last step and continue thanking God for each day I am able to enjoy.
Here are some photos of the long and winding road that led me here.
Okay my sisters with dense breasts – have you received a notice from your radiologist performing your mammograms that you have dense breasts? This is very important. My tumor was 8.5 cm just 10 months after my last mammogram which was allegedly clear. My particular type of breast cancer, Invasive Lobular Carcinoma (or ILC) is particularly sneaky in that it presents like a thickening of tissue and not like an identifiable lump or bump. Add dense breasts to the equation and I was just screwed six ways to Sunday.
Currently 30 states require some level of breast density notification after a mammogram (not including Indiana’s law).
Though some state laws are more similar than others, there is no standard from state-to-state on what patients are told or how patients will be informed.
I received the notification below from the radiologist who performed my mammogram in June of 2014:
“Your mammogram indicates that you have dense breast tissue. Dense breast tissue is common and is found in forty percent of women. However, dense breast tissue can make it more difficult to detect cancers in the breast by mammography and may also be associated with an increased risk of breast cancer. This information is being provided to raise awareness and to encourage you to discuss with your health care providers your dense breast tissue and other breast cancer risk factors. Together, you and your physician can decide which screening options are right for you. A report of your results was sent to your physician.”
I read this notification and threw it out. I just figured my mammogram was negative so I was fine, right? Dense schmense. Except just 10 months later I was diagnosed with breast cancer which turned out to be an 8.5 cm tumor. For those of you not familiar with breast cancer, 8.5 cm is a big fucking tumor. According to my surgeon this puppy was likely percolating before my 2014 mammogram especially since lobular tumors are slow growing. Please visit this website for more information and help get the word out. Mammograms are not foolproof, and if you have dense breasts, discuss additional imaging with your doctor.
So I was back to the oncologist for my 4 month check-up. My labs were good and there is still no evidence of disease (NED), which I am so thankful for. I’ve seen many women using the term “cancer-free” instead of NED. This is a misnomer. I’ve said it before but it bears repeating – once you are diagnosed with invasive breast cancer there is no such thing as “cancer-free.” Cancer-free suggests the cancer is gone, disappeared, never to return again, but once breast cancer becomes invasive (the cancer cells spread outside the milk duct or lobules and into the normal tissue inside the breast), all bets are off. Even with clear surgical margins and adjuvant therapies such as chemo, radiation and/or hormone blockers, those little buggers can hide anywhere for any length of time. If like me you’ve had lymph nodes test positive then that’s another strike against you. There is a lot of talk about recurrence and factors that go into projecting when breast cancer may return. One common thread I have come across in my research is that making it to the ten year mark is a good sign of long term survival. I just passed the two and a half year mark since my initial diagnosis and while I want to get to the ten year mark as quickly as possible, I also don’t want to wish my life away. I try not to dwell on the negative and what “might” happen, but I do feel compelled to educate as often as possible. “Awareness” is not just knowing we need our mammograms, we need to understand the devil we are up against.
Now stepping down from my soap box, I am also very sad to report that I am losing my oncologist. I received a notification from my insurance company that my premium will likely increase by up to $200, so I’m looking at about $700 per month next year, just for me. And as if that isn’t bad enough, Dignity Health and its physicians will no longer be a part of my network in 2018. My oncologist is part of Dignity Health. I filled out a form that purports to petition the insurance company for continuing coverage from a doctor that a patient saw for life-saving treatment but is now out of network, but I am told all of these applications have been thus far, denied. My oncologist is like a father figure to me. He made me feel like everything will be okay. He saw me through one of the lowest parts of my life. For two and a half years, he has been my knight in shining armer. He “gets it.” For a cancer survivor, having this doctor ripped away is both frightening and heartbreaking, like losing a sense of security. But, there is not really anything that can be done about it. I could continue to see him and pay out of pocket and he would probably give me a contracted provider price, but nothing would go toward my deductible. And God forbid what if I have a recurrence? I cannot afford out of network treatment. So, I will suck it up, put on my big girl pants and hopefully find another oncologist that is as wonderful as he is.
We just celebrated Thanksgiving so I want to mention how thankful I am to God for putting me on this path, no matter how dark it seems at times, He has lifted me up and given me perseverance and strength to face whatever lies ahead. I am thankful for my family and friends who stuck by me during these last couple of very challenging years and all the new friends I have made along the way. Something new I’m thankful for is our dog Amber who is a rescue we adopted in August. She is a one year old Australian Shepherd mix. It had been about a year and a half since our sweet dog Sammy crossed the rainbow bridge and it was time to give all of our love to another soul in need.
So I was back to The Boob Whisperer about a month ago to finally get the little dog ear extra skin removed and it looks SO much better. I am ecstatic. Are they perfect? No. But I knew they never would be. As I’ve said before, breast reconstruction is generally a salvage job, not a boob job, and they were always destined to be sisters, not twins. After this latest surgery I feel like I am one step forward and three steps back in my range of motion, and now I think it’s starting to affect my shoulder and back on that side. I need to start stretching and exercising ASAP before I am crippled. Between this problem and the cancer medication most days I feel like a 90 year old. I know that moving more will help alleviate this issue but it’s hard to get started when you feel like the Tin Man before Dorothy entered into his life. I know, I know, excuses are like assholes, everybody’s got one.
I’m also really great at excusing my lackadaisical attitude towards losing weight. I did lose like 35-40 pounds in 2015 during treatment, but I still have about 50 to go. I keep telling myself I’m going to do it but I never do. The difference now is I’ve almost given myself permission to stay this size (16-18) because hey, look at all I’ve had to endure? I deserve to eat what I want and be fat and happy. And one thing is for sure, I’ve never in my life been happy overweight but now I can honestly say it doesn’t bother me much. Just like so many other things in life that seemed like a huge deal before I was diagnosed with cancer, losing weight seems pretty unimportant in the grand scheme of things. You see, I’ve really succeeded in simplifying and prioritizing my life and that includes fretting about my size and appearance. But-being a healthy weight is important. Being overweight is a risk factor for breast cancer and the smart thing for me to do is lose the weight and reduce my risk. I’ve taken other positive steps, like quitting alcohol and transferring to a less stressful position at work, but it’s not enough. I need to get to a healthy weight and maintain it. I will never be the nutrition police like those proclaiming – No meat! No soy! No sugar! No white flour! Seriously though, fuck off. Life is way too short.
Weight loss is not simple for anyone but for me it particularly comes with huge amounts of baggage. I’ve been every size from a zero to 24. It started in high school when I used dieting to deal with my emotional issues and became anorexic. It happened in my early 20’s when I ballooned up to a size 24. It happened in my late twenties when I became anorexic again. When I got pregnant at 36 and gained 53 pounds it was because “I’m eating for two you know.” Yeah, two lumberjacks. For every time there were pounds lost, there were an equal number or more of pounds gained. I have so much loose skin from yo-yo dieting it is so not attractive. And each time I lose the weight I say “this is the last time.” At 51, it has yet to be “the last time.” At least I haven’t gained any of the weight back in the last two and a half years since chemotherapy so I guess that’s progress.
The thing is, I am at a place in my life where being overweight isn’t ideal, but truly it doesn’t cast a shadow over my happiness like it once did. I am thankful to be alive and I don’t give two shits what anyone else thinks about my size. It’s a wonderful feeling to finally love myself in all my extra pounds, scarred foobs glory so I’ve kind of been basking in this new self-acceptance. But if I truly love myself, I will give my body the care and nutrition it needs, so I am going to really try this time. I feel ready. Wish me luck.
This is a video a dear friend and fellow survivor created for our Breast Cancer Sisters Facebook support group. This poignant and powerful video demonstrates what breast cancer truly is….not just one month out of the year filled with all things pink. It’s real people, a tribe of warriors that will NEVER be able to put down their swords because breast cancer can and does come back, at any time. But we are strong and we will fight, while adjusting to our new normal, pushing through that feeling of waiting for the other shoe to drop, appreciating each new day as a gift.
Video credit: This is Breast Cancer…
Published on Apr 1, 2017 “After looking at all the photos submitted for our caregivers video, I kept saying to myself, ‘What if we show people the trials and triumphs of Breast Cancer?’ So I asked our members to submit photos of themselves through treatment and surgeries, the good and bad. You’ll notice these heroes both cry and smile through this disease. We celebrate small victories from the last blood draw to getting out of bed a few days after chemo, and big victories from the last chemo infusion to NED (no evidence of disease). Through it all, whether laughing or crying, we fight.
This is Breast Cancer….
Thank you to the warrior women of Breast Cancer Sisters for submitting the photos to show you how we fight for our lives.
Song: Rise Up by Andra Day (We do not own the rights to this song)”
Getting diagnosed with breast cancer is tough, obviously-but the toughest challenges are not always the obvious ones. Fear of death and dying is just the tip of the iceberg. I am generally known as a fighter and can usually be found facing this beast down with an ass-kicking attitude and a dollop of humor and sarcasm, but there have also been dark days indeed. I had so many fears it seemed like every day new ones I never imagined were popping up in my head. What if I leave things undone? Don’t get to everything on my bucket list? What about mending fences? Like Big Little Lies’ Madeline, “I love my grudges. I tend to them like little pets.” There are so many things to fear when you are diagnosed with breast cancer. I don’t believe they can truly be quantified, but I know that my greatest fear was not death per se, or dying, but leaving my only child who at the time was just 12. When I was lying on the table getting the diagnostic ultrasound, my first thought was that of course it was breast cancer, how could it not be? After all, my mom had been diagnosed at around the same age. My second thought was oh my God, Lili. A panic set in like none I’ve ever felt, as though I could already feel myself slipping away from her. I couldn’t breathe and I couldn’t think. The room started to spin so I squeezed my eyes shut. I even thought, if I hadn’t had a child I wouldn’t have this agony. I couldn’t get past the fear that I would be sucked out of her future. Lili and I are close – as close as a mother and daughter can be, and the thought that I might not be here to see her graduate high school and college, get married, have babies, was the most gut-wrenching experience of my entire life, without a doubt.
People often ask how Lili took the news when we told her about my breast cancer. Well, she was 12, so old enough to understand the concept of cancer and dying, but also at an age when she’s going through her own pre-teen experiences and struggles. At that age, I believe girls are pretty wrapped up with themselves which to me was a good thing. We kept it from her at first, until we met with the surgeon, but she knew something was wrong. Kids are way more intuitive than we think. She seemed to understand breast cancer is a serious thing but we were able to allay most of her fears by explaining the different surgeries and treatments I would be facing. She was upset and scared, but hopeful and I like to think it was mostly due to my attitude and tone. You see, I had already gotten into battle mode, kicking ass and taking names, and she knows when that happens I am unstoppable. But it is virtually impossible to stay in that frame of mind 24/7. There are times when I might silently scream and cry in the shower. Sometimes I’m replaying Debra Winger in her hospital bed saying goodbye to her kids and worrying about how the hell Flap was going to raise them. Luckily Tomas is so much more competent than Flap but still, I think little girls and moms have a special relationship.
As it turns out, Lili was my rock. She really stepped up to the plate and helped out her Dad in taking care of me, the house, and the pets after my surgeries, chemotherapy and radiation. I could count on her to have empathy but also treat me the same, and not as a sick person. I might have been boobless and bald, and have 1/10th of my usual energy (which wasn’t a whole lot to begin with), but I was still the same Mommy. I still had all the mad Mommy skills, like love, wisdom and humor. We could still talk about clothes, hairstyles, music and world events. We could still discuss teenagerhood that is just over the horizon. We could still hang out, and just be. While the fear of leaving her too soon is still there, it’s fading somewhat. When I catch my mind veering off in that direction, I remind myself cancer will not steal my joy and I must cherish every moment I have with her.
Jill Brzezinski-Conley’s story is amazing, inspiring, and incredibly sad. Her light is still burning bright.
I made my first visit to New Jersey this past weekend and the circumstances surrounding this trip are pretty freaking cool. I belong to a Facebook breast cancer support group which I also help moderate. There are two admins and one other moderator of this group, and I met all three of these kickass ladies for the first time at Mary’s Place by the Sea in Ocean Grove, New Jersey. One actually lives in New Jersey, one lives in New York, and the other lady and I are from Arizona. Mary’s Place is a spa/retreat for women undergoing cancer treatment or are recent cancer survivors. We each had our own rooms with our own bathrooms, common areas for recreation and dining, and vegetarian breakfast and lunch were provided. The food was excellent. For dinner the four of us went out partying, raised hell and painted the town pink (which is actually code for walking to the local pub and taking Uber back to Mary’s).
During our stay we were offered complimentary treatments such as gentle yoga, oncology massage, reflexology, meditation and others that escape my memory just now. There were other ladies outside of our group staying at Mary’s for the weekend and all but one were breast cancer survivors. This is how prevalent breast cancer is. It’s disturbing and sinister.
Besides having the opportunity to visit this incredible retreat and meet my three group admin counterparts, we conducted a Facebook Live Q&A and prize giveaway session for our group of nearly 7,000 members while we were there. One of the interesting aspects of our collective experience, is all four of us had varying diagnoses and treatments. All four of us have undergone bilateral mastectomies, three of us have had chemotherapy, one has had radiation and three have had reconstruction surgery. So even though we are all not necessarily boobless anymore, we did lose our breasts. The ones God gave us. The ones that showed up at puberty and later fed our children. They were perky and saggy, big and small and somewhere in between. We might have loved them or hated them or a combination of both during our lifetime but one thing is for certain-we never wanted to lose them to cancer. We now have each other to lean on, to lift up when we are down, to understand how much of our lives are affected by this disease. I cannot imagine my life without these ladies in it. #breastfriendsforever
It has been almost two years since I finished my active treatment. Bilateral mastectomy, chemotherapy, radiation, and now pills to block the estrogen that fueled my breast cancer. I will never live my life as I once did wandering around like cancer can’t touch me, all cocky and invincible. Life is fragile and it’s taken me several stages throughout my life to realize that. I had a mother who died at 54 from health related crises and a brother who died at 40 in a motorcycle accident so one would think I would’ve had an appreciation for my tenuous existence here on earth.
I once said breast cancer wasn’t driving my life any longer but it was still a very noticeable passenger in my car riding shotgun. I think I am able to say it’s moved to the back seat now. Cancer is actually not the first thought in my mind when I wake up in the morning which I thought would NEVER happen. I mostly go about my day without obsessing over my fear of recurrence or my constant symptoms from my cancer prevention medication. For those who are still in the thick of it or just feel as though they are, make no mistake my anxiety and fear is still present, but it’s no longer in the foreground. Sometimes it wanders there if I feel a new ache or pain, but it no longer has me by the figurative balls. I feel like if a recurrence does happen down the road (and being Stage III it would not be unheard of), I am more prepared. I don’t know if it’s just time passing, or something I did subconsciously to change my mindset but a new kind of serenity and acceptance has been slowly creeping in. No matter what happens, cancer won’t stop me from living my life while I am here, however long that happens to be. I am continuing down the road of life and eventually cancer is going to get kicked out of the car completely, we’re just not there yet. FYI he’s an asshole so don’t pick him up.
Something I see frequently is breast cancer survivors saying that they want their old life back. In my own case, I can say with 100% certainty that I do not want the life that I was living at the time of my diagnosis back. That woman is someone else. It’s not that I don’t like her, but I like new me better and for me, saying I want my pre-cancer life back is analogous to saying I want to be 25 again. I definitely do not want to go through my 20’s again especially without knowing what I know now. Can you imagine re-learning not to drink different types of liquor throughout a night of partying? Or that your utilities will actually be turned off or your car will be repossessed when you don’t pay the bills? How about realizing that you are not even close to being as clever as you thought you were? Maybe you guys were a lot smarter than me but in my 20’s I pissed away more money, took the most terrible jobs, and made the worst dating decisions ever. I do hate more than anything that I got cancer but I would never want to undo the knowledge, strength, determination and hope I discovered within myself because of it. And the friendships. I have met the most extraordinary people on this journey. If going back in time means I lose all of that, NOPE.
Last weekend I went on my first out of town trip since my diagnosis in April, 2015. Usually we go on a beach trip at least once per year but 2015 was the year of The Cancer, The Bilateral Mastectomy, The Chemotherapy and The Radiation. 2016 was the year of The Reconstruction. So last Saturday we traveled to San Diego for a few fabulous and cool weather filled days on the beach and one day at the awesome San Diego Zoo. I wore a swimsuit for the first time since cancer. I have to admit I wish I never had to lose my boobs but these new ones are pretty damn nice in a swimsuit top. Also it is AWESOME not to have to ever worry about a bra.
So one bad thing that happened was I had another fall (for those who don’t know, I am blind in my left eye and trip, fall, and bump into things fairly regularly). More about that here. I was walking with my daughter and husband on the pier and was taking steps forward with my phone to capture a picture of some ducks in the harbor and of course I tripped and fell. On cement. It hurt like a motherfucker too and the scab and bruise didn’t look very good with shorts or my swimsuit. After boogie-boarding with Lili for an hour, and on top of my ouchie I was so freaking sore and tired. I’m 51 but I felt like 80 years old instead of my usual 70 but I was on vacation and I was going to enjoy myself dammit.
I am so grateful for this trip because first – it’s like a sauna in Phoenix right now and second – the beach is my very favorite place on earth. I don’t know if it’s my new appreciation for life or what but the ocean air smelled better than I ever remembered, the sunsets were more beautiful, and the feel of the ocean waves against my poor scarred and battered body was like heaven. It’s true for me that I do enjoy life more now. I have the stiff joints of a 70 year old and hot flashes from my cancer medication but I am powering through it. I am so thankful to still be here and I feel as though I am working hard to appreciate life’s moments and opportunities that I was oblivious to in my old life. I don’t know how my life would’ve turned out if I hadn’t gotten breast cancer and I will never know, so what-iffing is pointless. I am not thankful for cancer but I will always be thankful for the confidence, strength and appreciation for life’s little miracles cancer has given me. My soon-to-be-in-high school daughter gets it too because she thanks God for the gift of each day.
I’ve mentioned that I’m in a few breast cancer support groups on Facebook. It saddens me that so many women are traveling down the path I did in 2015. There are hundreds of posts that talk about what you’ll need for a Mastectomy. Stuff like button up shirts (I wore oversized soft men’s cotton T-shirts instead because they were comfier), gadgets to hold your drains, a recliner or a pillow mountain for sleeping and lots of other little useful items related to comfort and efficiency. Things you’ll need in the hospital. I was only there one night so all I really needed was my phone and my book.
But what do you need mentally to be prepared? I can’t imagine a single thing that could’ve prepared my mind for this surgery. Or my heart and soul for that matter. The last day of work prior to my bilateral mastectomy was a Tuesday and I was sitting by two of my coworkers at the end of the day and they were looking at me with such pained expressions, like I was getting ready to face the electric chair. I was terrified, and jealous. Jealous that Thursday would just be another day for them. I felt as though life was moving forward for everyone else but me. The feeling reminded me of those space movies where one of the astronauts is left outside the ship and can’t get back in because he’s lost his tether and the other astronauts know there’s nothing they can do to help so they’re staring out the window in sympathy. Nobody tells you how alone you will feel. My husband and daughter were with me every step of the way. I had wonderful friends who stood by me. But I was completely alone. For a long time I felt like I was separated from the rest of civilization. Nobody could come close to understanding the depth of my fear and loneliness. I really only felt comfortable and like I belonged when I was around my doctors and nurses. Everyone told me how strong I was and I guess I am. I’ve had some life events that’ve toughened me up in my 51 years but nothing prepared me for cancer. I don’t know how it happened because I didn’t feel especially strong but something deep down took hold of me and turned me into a soldier fighting a war. I like to think it was God giving me the weapons I needed to fight.
Another thing nobody really tells you is what to expect physically. How does this work exactly? Are they sliced off like prime rib? What’s it going to look like? I’d seen photos but they all looked different. When my bandages came off I looked right away. The first photo is not right after my mastectomy but a few months later after chemotherapy and radiation. The tan radiated demarcation is pretty noticeable.
I wasn’t horrified but I couldn’t imagine how The Boob Whisperer was going to fix it. Well after Latissimus Dorsi flap with bilateral tissue expanders, seven months of expansion and implant exchange surgery he did. I’ve still got a bit of extra skin on the right side he said he could remove and I’m planning on the 3D nipple tattoos. Some women actually get plaster casts of their breasts before their mastectomy. I never even thought about that. I didn’t even take a goodbye boobs pic. The Boob Whisperer has a photo but I’ve never seen it. What’s the point? In the end they turned against me. They tried to take my life. I don’t mourn them and I don’t wish I could’ve kept them. But I am forever changed and that’s okay.
Medicine isn’t an exact science. I was reminded of this when I saw the cardiologist to follow up after my heart attack-not heart attack a few weeks ago. The cardiologist I saw in the hospital went on maternity leave so I saw her colleague and the first thing he told me was “you were given the wrong diagnosis.” He went on to explain why I had viral pleurisy and not pericarditis. He said they present the same and are treated the same so basically no harm done. Okay, not really sure how I feel about that.
In other news I had my four month oncologist appointment. Something that others might not understand is the doctor/nurse and cancer patient relationship. One of the more difficult parts of completing chemotherapy and radiation is the loss of day to day contact with my doctors and nurses. It’s immensely comforting to know you have these amazing people battling with you who understand your fear and loneliness because cancer can make you feel so isolated. When I finished treatment and would no longer see my oncologist every three weeks I felt like the rug was pulled out from under me. It was hard to let go of what felt like a security blanket. As much as I dread the anxiety leading up to my oncologist appointments, I feel comforted just talking with him.
So my oncologist read my lab results and said all was as it should be. Phew. But Jesus H. Roosevelt Christ, it’s amazing how I can go from living my life, minding my own business to totally losing my shit while sitting in his office waiting. It’s humbling. Just when I feel like shit’s under control, the days leading up to these oncologist appointments are riddled with trepidation. Then the words “everything looks good” are spoken and the breath I’ve been holding is released into the universe along with all my bad panicky juju. I’m doing mental cheerleading moves and I want to Whip and Nae Nae with his awesome nurse whose name is also Kelly. So as I slide back into life, the cancerphobia slips into the background. At least until my next four month appointment. #kickingcancersass #cancercanfuckitself
Today I came across the heartbreaking story of Kelly Owchar, a 30 year old mom to a 2 year old son and newborn twin daughters, who recently died from breast cancer. I cannot stress enough how important it is to pay attention to ANY differences in your breasts, nipples and armpits. Any differences. There are so many myths circulating, like breast cancer doesn’t “hurt.” Well, that is false because it can totally hurt. Or breast cancer is largely genetic. Only 5-10% of cases are attributable to breast cancer genes BRCA1 and BRCA2. Prior to my own diagnosis, I had no idea there were different types of breast cancer and they could present in many different ways.
Perform your self-exams. Get your annual screening. If you have dense breasts, many states including Arizona, have laws in place requiring radiologists to inform you that you have dense breasts and you should speak with your doctor about possible additional screening like 3D mammography. This is because cancer can hide in dense breast tissue, especially my type of breast cancer, invasive lobular carcinoma. Even then, imaging tests are not 100% accurate 100% of the time. I’ve said this before but it bears mentioning again – I had a mammogram, ultrasound and MRI on both breasts. My tumor was detected on the left breast, and this was not a surprise because it was considerably large. What were not detected were the precancerous cells in my right breast found only on pathology following my bilateral mastectomy. Also, my diagnosis came two months before I was due for my annual mammogram. I finally noticed one day that my left nipple had gone flat. That was the tumor. If you feel something is not right, ask your doctor for another test or seek a second opinion. Pay attention ladies and spread the word.
Please read the poignant story of Kelly Owchar here. In her case, she dismissed the signs as post-partum symptoms which is so easy to do, especially when breast cancer screening is not recommended for women younger than 40.
I want to talk about Olivia Newton-John. As most people have read, she has recently disclosed that her breast cancer has returned and it has metastasized to the sacrum. This means she is now stage 4. I do not know what her staging was when she was first diagnosed twenty-five years ago but regardless, stage 4 means she will need targeted treatment for the foreseeable future. I just pray she gets another twenty-five years. This is another example of how insidious breast cancer is. You can have no evidence of disease for years, and in her case, a couple of decades, and then bam! It can hide in your body, dormant for a year, or a quarter of a century or more before rearing its ugly head again.
We have got to live our lives like tomorrow isn’t promised because it really isn’t. Here is one of the more informative articles about Olivia Newton-John’s breast cancer recurrence. Rock on Olivia, you are one bad mammajamma and I know you are going to kick cancer’s ass. Again.
I was feeling somewhat celebratory earlier this week since it was my two year bilateral mastectomy anniversary on May 21st. I read somewhere that making it past the two year mark without recurrence is a considerable milestone. I’ll take it, but I’m not counting those chickens just yet. I am a fighter but also have a healthy respect for superstition. I am so thankful to my friends and family and all my pink warrior sisters for standing by me and lifting me up.
This is going to sound so cliché, but it is always fucking something. Late Tuesday night, around 11 p.m. I started getting sharp pains on the left side of my chest. The pain also radiated across to my shoulder. I know what you’re thinking because yeah that’s what I was thinking. HEART ATTACK. So I tried lying in different positions but nothing was helping. I don’t have any personal or family history of heart problems, no high blood pressure or cholesterol. I don’t even think I’ve ever had heartburn. But by the morning I was pretty freaked out. Tomas has had a really bad flu these past few days so I told him I was going to drive myself to the ER. He suggested I start with Urgent Care and even though I knew that was a pointless and useless idea I did it. Of course during my examination the nurse practitioner asked me “why did you come here and not the ER?” Me: “um…..” So against their advice I drove myself the two miles or so to John C. Lincoln North Mountain. Tomas was very sick and I was not going to ask him to drive me the two miles in his condition and I was closer to the hospital than he was. I texted Lili to to let her know what was going on. She asked me what does against medical advice mean? I told her it means I don’t want to pay a few hundred dollars for ambulance transport.
When I got to the ER of course it was filled with what appeared to be a bunch of people who did not look the least bit sick and meanwhile I could be having a heart attack. I was taken back quickly and given an EKG. No heart attack. Okay then, riddle me this, why does it feel like there is an ice pick stuck in my chest? No I am not exaggerating. I like to think I’m pretty tough but this was like no pain I have ever encountered. I was going to pass out. I asked the nurse if I could stay in the room on the table after the EKG and she said no sorry, we might need it for a cardiac patient. “Can’t I stay here until then?” “Um no, I’m sorry.” “You mean SORRY, NOT SORRY.” Bitch. I was ushered into a second waiting room with more people who, again, mostly did not look very sick to me. Well, except the lady who may or may not have had a broken leg. The pain was so bad I started panicking. And crying. Sobbing. Choke-sobbing, which was making the pain worse. Nobody made eye contact with me. In fact everyone pretty much acted like I wasn’t there. Nurses literally walked right by obviously making a concerted effort to not notice me. I guess until it’s your turn you just do not exist. Finally someone took pity on me and found a room for me. As long as you’re well enough to howl in pain it’s not considered a real emergency. After a while they finally gave me IV Morphine and Toradol which is an antiinflammatory. Then they had to give me MORE Morphine. That was when I started to be taken seriously and not like some psycho howler monkey. During this time I keep thinking what the fuck is this? Is it a tumor? Is it cancer metastasis? Because once you’ve had cancer, that’s how your mind works. I think I’ve been doing pretty well with my anxiety about recurrence. The panicky feelings may not be as acute now, two years later, but they are still there.
More tests were performed, chest CT, echocardiogram, and blood work. Cardiac enzymes were elevated. I had a cardiology and infectious disease consult and they both concluded I had pericarditis which according to the American Heart Association is described as follows:
“inflammation of the pericardium, two thin layers of a sac-like tissue that surrounds the heart, holds it in place and helps it work. A small amount of fluid keeps the layers separate so that there’s no friction between them. A common symptom of pericarditis is chest pain, caused by the sac’s layers becoming inflamed and possibly rubbing against the heart. It may feel like pain from a heart attack.” No shit.
I asked what causes it. “Sometimes we don’t know what causes it but it can be caused by a virus, is there anyone sick at your house?” “Well there’s a guy with a raging fever who’s been puking his guts out, does that count?” So after my echocardiogram to make sure that my heart wasn’t damaged by chemotherapy or radiation, they sprung me loose yesterday. I need to take 600 mg of ibuprofen twice a day and follow up with the cardiologist. I do not need more doctors. For the love of all that is holy, can I please lose some of these doctors?
I’ve been on Letrozole now for about two months. You may recall from my prior post that Letrozole is an aromatase inhibitor. Without going into the science behind why I need to take it, let’s just say taking it reduces the chances of breast cancer recurrence and metastases. If you’re wondering what the difference is, according to breast cancer.org, a recurrence happens when breast cancer reappears in the same or opposite breast or chest wall. Metastasis is when breast cancer cells spread to another part of the body through the blood stream or lymphatic system. Metastatic breast cancer can be recurrent breast cancer if the original cancer has come back and spread to another part of the body. But most doctors use the term “locally recurrent” to describe breast cancer that has come back in the same breast/chest wall and “metastatic” to describe breast cancer that has spread to or come back in another part of the body. But I digress. Since I’ve been on Letrozole my joints have been stiff and sore, but I can deal with that. What is becoming a huge problem for me is fatigue. I don’t recall feeling this tired on Tamoxifen (what I took prior to Letrozole). It’s like I have narcolepsy you guys. I fall asleep so fast, it’s like I hear fingers snap and I’m out, like hypnosis or something. All I want to do is nap. Here’s me at work.I know exercise is supposed to help boost energy and metabolism but I barely have have energy to walk around the block. So I need energy to get more energy. It’s like I need to put the cart before the horse, or maybe I’m the horse and cart has to pull me. I’m thinking of calling my oncologist about this but how much do you want to bet he tells me to exercise? My diet has been better but not consistent. Easter was a ten day long sugar extravaganza. The other day I was looking in the pantry for something to narf and I noticed someone had turned my Medifast shaker into a cat food scooper. I’m sure there’s some sort of symbolism there. On a more positive note I found an awesome page on Facebook called cleanfoodcrush with this chick named Rachel who posts simple clean eating recipes. They can be as easy or as complicated as you want. I’ve been slowly trying some of her recipes and they are tasty, simple and healthy. I totally recommend checking her out.
Unfortunately my foobs are in a holding pattern. I still need that little bit of extra skin removed on the right side and my 3D nipple tattoos after that. I was hoping to accomplish both of these items by the end of the year but it’s not looking promising. The Boob Whisperer is STILL not contracted with my insurance company (which is the only health insurer in Maricopa County offering an individual health plan). But I’m 95% done and I’m still very blessed and pleased with what I have. I was just hoping to be done with it once and for all and be able to move forward.
Two years ago today I got “that” call. The “you have breast cancer” call. It was surreal because one part of my brain was saying “whoops sorry big mistake, it’s not you.” Another part heard “oh my God, you are dying.” I thanked the radiologist and was about to hang up when she asked if I wanted to know what kind it was. Kind? There are different kinds? I wrote it down-invasive lobular carcinoma. I’d no idea yet what that means exactly but soon I would know more than I ever thought to know about breast cancer.
It happened on a Wednesday, my day off, and I’d been waiting for it. I don’t know how I managed to power through that day, or even that week. I was home alone, twelve year old daughter at school, husband off the grid in Nepal and he wouldn’t be home until Sunday. No family to speak of besides in-laws who live in the Czech Republic and out of state cousins who I hadn’t spoken to in years, other than on FB. I e-mailed a couple of close friends who offered to drop everything to be with me, but I needed to be alone – with no distractions, to grieve the life I knew and face this seemingly impossible challenge in front of me. I cried and prayed over the next few weeks, asking God to spare me if only for my young daughter who would have no female family member to guide her into adulthood. Tomas is an amazing father, but the thought of my baby girl losing her mommy (she’s 14 now and still calls me mommy), was absolutely the most gut-wrenching moment of my life.
I admit after two years, five surgical procedures, four rounds of chemotherapy and thirty-three radiation treatments I’m still terrified, but I have the gift of knowing the magnitude of my strength is greater than I ever imagined. And like so many of my brave pink sisters, I’m STILL kicking ass and taking names. Do you hear that asshole Cancer?!
There is a LOT of this going around, so let’s not let it take over ❤
By Kelly Nemecek
Many fellow breast cancer survivors, myself included, freak out about scans. This is actually a thing we call scanxiety. It’s the anxiety you feel while waiting for a scan, during the scan, and waiting for the results of the scan. Before I go any further I want to point out that not everyone needs the same scans and while certain scans are appropriate for one patient, they may not be appropriate for another. Even among breast cancer patients with the same diagnosis, there may be factors that warrant a different approach to imaging studies. Having scans is a double edged sword-you want the scan for your peace of mind but in the meantime you know you’re going to get all nerve wracked and distressed.
I remember the PET scan I had after my bilateral mastectomy. I asked the technician when I might receive the results, and she…
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I’ve been on the aromatase inhibitor Letrozole (generic for Femara) for a month now. My breast cancer is estrogen receptor positive which means it requires estrogen to grow. Aromatase is the enzyme that synthesizes estrogen. Before Letrozole I took Tamoxifen which attaches to the hormone receptor in the cancer cell, blocking estrogen from attaching to the receptor. According to my oncologist, Tamoxifen is not as effective as aromatase inhibitors once a patient is post-menopausal and it’s really not as effective with my type of breast cancer, Invasive Lobular Carcinoma.
Both are powerful medications that come with a multitude of side effects. So far I feel like I am experiencing the side effects of Letrozole way more than I did with Tamoxifen. I’m more fatigued, I have increased joint pain and every time I move any part of my body it creaks and cracks. Loudly. I experienced mild joint pain with Tamoxifen but this is so much worse. I’m trying to be more active. I practiced softball again with Lili for the past three days and I am still sore. I’d like to know why it takes forever to get in shape but conversely just a blink of an eye to get out. One thing that makes me twitchy is I am STILL a good player albeit much slower but when I tell people I’ve been coaching Lili for her upcoming tryouts they kind of give me the side eyes. They assume she gets her athletic ability from her dad (understandable as he is actually super crazy athletic but has never played any American sport ever). Yes I am a bit fluffy and may look as though the only sport I’m good at is couch potatoing, and yes I had cancer and cancer treatment but you know what? I played soccer, tennis, softball, baseball and ran track. I’ve still got it dammit!
So speaking of Letrozole and its side effects, there is one new side effect I’ve been having and that is crazy-ass dreams. I think the oddest one I’ve had was a couple of weeks ago. I was with a group of people at some kind of sports bar and baseball Hall of Famer Reggie Jackson was there and I was taking a selfie with him. I’m sure the dream was prompted by my recent softball outing with Lili but why him? Maybe he was in a commercial or something, I have no idea. I used to follow baseball as a kid but that was like more than 35 years ago. I’ve had other weird dreams too where I’m working in retail which I also haven’t done since my twenties. In those dreams I’m all stressed out because I’m either being called in to work on my day off or I’m at work and can’t ever figure out how to operate the cash register. Meanwhile the line is getting longer and longer with pissed off customers. Sometimes I have dreams that are just a jumble of different people who I may or may not know, in various realistic and unrealistic situations. I wake up kind of foggy like “what? Huh? What just happened? Is it a work day?” If you’ve ever watched Mr. Robot or Legion it’s totally like that. So stay tuned, hopefully I will find a remedy for my new creaky cracky joints and Lili will have made the school’s softball team.
ADDENDUM: In the interest of full disclosure, another side effect of Letrozole is dryness EVERYWHERE. For two weeks I’ve been pooping little rabbit pellets. True story.
This week I’m sharing my guest piece for Breast Cancer Sisters’ Blog which is an awesome site created by fellow blogger and breast cancer warrior Taylor Eames.
By guest blogger Kelly Nemecek
In the weeks after my diagnosis of Stage 3 breast cancer, I found myself crying, out of fear and hopelessness, devastated at the thought that my 12 year old daughter might lose her mommy. But as I got closer to my surgery date, a strange thing happened. The hopelessness turned into determination and a sense of purpose, like a soldier preparing for battle.
I knew that I would be relying heavily on my faith in God, but what I didn’t know at the time was that my sense of humor would also be a huge factor in how I would cope with this new threat on my life. I have always been very self-deprecating, and my husband and daughter can pretty much make any situation hilarious. Case in point- after my surgery as I was slowly regaining consciousness and trying to get my bearings in…
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Well I’m still in limbo about whether The Boob Whisperer will take my new insurance or not. Apparently his office has applied for a contract with my new health plan but it hasn’t happened yet. Meanwhile I’m still having some shoulder and muscle pain on my left side. It’s exhausting especially if you’re out of shape which I totally am. I was practicing softball with Lili this morning for a couple hours and I’m completely whacked. I barely even ran and the one time I did I tripped and went down like a lead balloon.
Lili thought it would be fun to point out that’s the third time she’s seen me trip and fall in the last year. A couple weeks ago we were walking to the car in a parking lot and I tripped on a curb and biffed it. Right in front of this guy sitting in his car. He was very nice and ran over to see if I needed help. Once we got back in the car I laughed and said “well that sucked.” Lili said that it was the longest slow motion fall down she’d ever seen. Most of you know I’m blind in my left eye from meningitis in 2004 so what looks like clumsiness is actually no depth perception and a huge “blind” spot. You can read more about my blind adventures here.
Moving right along, I wanted to have a little teaching moment. Many women (including me before my diagnosis) think breast cancer is a lump found on your breast. Sometimes that is the case but many times it’s not. The most common type of invasive breast cancer is ductal, and about 70-80% of all invasive breast cancers are ductal or IDC-invasive ductal carcinoma. My cancer was lobular which is the second most common invasive breast cancer although it only represents about 10% of cases. Invasive means the cancer has “invaded” or spread to the surrounding breast tissues. Lobular means the cancer began in the lobules where the milk is produced. Milk travels from the lobules into the ducts which then carry it to the nipple. The thing about lobular breast cancer is that it is super sneaky and is often not detected on regular mammography especially if you have dense breasts. I probably should have been getting 3D mammograms but even then it’s not always detected. It frequently presents as a thickening of tissue as opposed to a spherical shaped “lump.” I always thought it would feel like a marble. You need to be aware of ANY changes in your breasts, armpits or nipples. IDC or invasive ductal carcinoma is when cancer cells begin forming in the milk ducts and have spread beyond the ducts into other parts of the breast tissue. There are non-invasive forms of both lobular and ductal carcinomas known as LCIS-lobular carcinoma in situ and DCIS-ductal carcinoma in situ, where the cancer cells are contained in the lobules or ducts. There are also some less common breast cancers like inflammatory. I know it’s a lot of letters, like breast cancer alphabet soup but since 1 in 8 women are diagnosed with invasive breast cancer in their lifetime it’s important to educate ourselves.
There are numerous factors oncologists use to determine what stage a patient’s breast cancer might be. Staging goes from 0 which are the non-invasive or in-situ cancers to stage 4 or metastasis (mets) where the cancer cells have traveled to distant organs like bones, lungs, liver, brain, etc. I was Stage 3A, 8.5 cm tumor, 2 out of 14 lymph nodes positive. From breastcancer.org:
Stage 3A describes invasive breast cancer in which either:
Once there is a Stage 4 diagnosis it is usually treated like a chronic disease. I’ve probably said this before but it bears repeating – there is no 100% cure for invasive breast cancer. If you’ve had a bilateral mastectomy followed by chemo, radiation and hormone therapy if warranted like me, the best you can hope for is no evidence of disease (NED). Even if the surgeon believes all cancerous tissue was removed there is the possibility that one or more of those cells sneaked by. There is just no way to know definitively. This is why my oncologist and most others say NED and do not say “cancer free.” I think it is an important distinction because one sounds cautiously optimistic while the other sounds a bit like a false sense of security. I’m sure there are those that will disagree with me because maybe hearing the words “cancer free” makes it easier to live with the uncertainty, but I am a realist and the reality is every day is gifted but not guaranteed.
I was supposed to see The Boob Whisperer this coming Monday. He was going to schedule the minor revision to correct the little divet and extra skin on my right foob. I was also going to ask him about the 3D nipple tattooing process. As it turns out, he is not contracted with my new insurance. His wonderful patient liaison called me with the news. I mentioned that he’s listed in my network but she said they are still trying to get contracted. I also told her that it’s the only insurance provider of individual plans and I have no other options. She said they are hoping the contract will go through soon. So, until then I’m in limbo. Otherwise they’re still very numb and now my left shoulder hurts when I lift my arm. I probably need physical therapy. Maybe my yoga teaching husband can show me some stretches or something. I am pretty tired of doctors and such. After The Big Chop I saw my breast surgeon frequently, followed by the oncologist every other week, chemotherapy every three weeks, then radiation every weekday for six weeks. A few months later I had my reconstruction surgery and saw The Boob Whisperer pretty much once a week for 8 months. I was in a doctor-visiting bubble.
I remember The Boob Whisperer telling me about a clinical trial underway for larger than 800 cc (the largest legally available in the U.S.) implants for reconstruction patients, going up to 1,400 I believe. 800 may sound like a lot when uttered in breast augmentation circles, but with reconstruction it’s not that large unless you’re like 5 feet tall. For a taller woman with a larger frame, 800 might mean a B cup or less. For me it’s about a full C. I was chatting with a woman on Facebook recently who is part of this Athena trial at the Mayo Clinic and she has 1240 cc. These extra large silicone implants are expected to be available to breast reconstruction patients (who fit the criteria) some time in 2018. I would have liked to have gone larger, but hey these are still fabulous and very perky. Right now I need to work on getting the rest of my body in shape to match my new foobs. It’s funny how one’s perspective evolves depending on current circumstances. After The Big Chop I didn’t give two craps about having boobs. Good riddance. I felt that way all through chemotherapy and radiation. I did notice though that it seemed like boobs were everywhere I looked, in my face, mocking me. A couple months after radiation I admit I was longing for boobs again, but I didn’t want to wear a bra with prosthetics and mostly it’s because I hate wearing a bra at all now after going without for almost two years. Bras are just not comfortable and the ones that are comfy don’t do anything a cami or going commando can’t do. Anyhow, once my radiated tissue had healed I consulted with The Boob Whisperer about the plan for reconstruction and he explained how with the tissue expansion I could decide how big I wanted to go. Apparently he would just fill me up until I was satisfied-ahem-was a satisfactory size. At first I felt like, oh a C will be fine, it’s what I had before The Big Chop. But then I got kind of greedy, picturing a nice perky porn star rack. This of course prickles my feminist sensibilities, and of course I wouldn’t be happy with boobs so enormous they could double as floatations when the plane I’m on crashes into the ocean. I wonder if the idea of getting large breasts was kind of a fuck you to cancer, like “you may have taken them but they’re back baby-bigger and better than ever so suck it!”
I realize I need to love myself the way I am-no matter my breast size and give myself time to get to know this new version of me and be comfortable in my new skin. I also found that as much as my reconstructed breasts have done for my confidence and self image, I was actually a strong and beautiful person all along, even more so when I was bald and without breasts. This is because during that time in my life I really learned to appreciate my inner qualities and let them carry me. It may sound kind of braggy but it’s true, and I recommend everyone look for this within themselves.
So my foobs are doing very well. I have another appointment with The Boob Whisperer on March 6th and I believe he will then schedule the procedure to remove that little extra skin on the right side which looks like a little dog ear. What’s frustrating is my foobs are still sore and numb. I also get phantom itches which I scratch, and which I can’t feel, and the itch is still there. Is this some kind of weird phantom itch thing? The itches of ghost boobs past?
If you watch TV or go the movies with any regularity you will inevitably come across a story line about cancer. I’ve been watching This is Us on NBC and if you know that show you’ve seen the story line about Randall’s biological father having stage four cancer. People having cancer on TV and in movies have always made me uncomfortable. I still ugly cry when I see Debra Winger in her hospital bed saying goodbye to her kids. But I could still look at scenes like that and tell myself “it’s just a movie” and let it go. You can’t really imagine yourself in their shoes. You’re part of the Not Me group. After my breast cancer diagnosis, every cancer plot smacks me upside the head like “wake up THIS IS YOU.” And I start to freak because I haven’t done hardly anything on my bucket list. I can’t even recall everything on my bucket list. Here are a few bucket items in no particular order:
If nothing else, number 5 is so very important. I get verklempt when I think about how fast Lili is growing up and at the same time, every year that passes is another year I’ve made it through.
Yesterday on Valentine’s Day I had my four month oncologist appointment. I always have medical stuff on notable dates. First oncologist appointment on my wedding anniversary, first round of chemo on my 50th birthday. Thankfully my CBC panel came back normal so still NED (no evidence of disease). We talked about the Tamoxifen I’m taking and since he also checked my estrogen levels he was able to confirm I’m in full blown menopause. This means I switch from Tamoxifen to an aromatase inhibitor, Letrozole starting Monday. I told him about my achy joints and he told me to stretch and exercise which seems to be pretty much the cure for all of a body’s ills. I know I’m getting old which means my bones are more creaky but I creak and crack with every move I make. How did I get to be 50? When did this happen? I’m pretty sure a couple years ago I was 30. At least it seems that way. I know some of the joint pain is attributable to the Tamoxifen, but still.
I’ve mentioned I belong to some closed Facebook groups of ladies in various stages of their journeys with breast cancer. The largest one was started last summer/fall by Lisa Schwartz, MD, a radiation oncologist in California. She infrequently posted brief videos of different topics to the page but didn’t really interact with the group other than to advertise her on-line community called the Breast Cancer Collective which was $29 per month to join. I have no idea if anyone signed up for that but by all accounts it just looked like it offered information anyone with access to google could obtain. Meanwhile, her Facebook group blew up to over 7,000 women across the world. It was pretty much the most positive experience I’ve ever had on social media. Women from all walks of life and all corners of the world were offering strength, support, love and compassion to each other as we were all in the same fucked up boat, so to speak. About two weeks ago, Dr. Lisa posted that the group had grown so large it was taking more work than she anticipated and she was going to start charging $5 per month per person effective the following week. Now $5 per month for some people is a lot. I could have afforded it but that’s not the point. It’s the principle. I belong to other Facebook groups with high membership that are free. After a few women posted (respectfully) they were leaving the group Dr. Lisa shut it down right then and there and went totally dark. 7,000 women suddenly out in the cold without a way to contact each other. Luckily the members’ names were still visible for a short period afterward and some awesome ladies started two new groups by contacting members of the old group, which have now grown to 330 and 270 members, respectively. It appears Dr. Lisa reopened the original group and it has 73 members (who I guess don’t mind paying $5/month and also subsidizing a physician’s salary with their breast cancer). My point is, this is about the shittiest thing I’ve seen in a long time. My theory, for what it’s worth is that she hoped women in the Facebook group would join her Breast Cancer Collective Community for $29 per month. I doubt anyone did because as I said, the value of the product she offered was not commensurate with the cost. So then she decides to charge her potential cash cow of 7,000 women, $5 per month. Even if she only gets 1,000 ladies to agree to pay, she’s then making $5K per month just for moderating a Facebook group of women dealing with breast cancer. I realize this is probably perfectly legal but is it ethical? And to shut it down without warning, knowing thousands of breast cancer survivors who’d built friendships would probably lose touch with one another? I’m so thankful I was able to stay in touch and join the new groups but I wonder about the thousands of others who have no idea what happened or how to reconnect. Shame on you Dr. Lisa, and I use therm “Dr.” loosely.
In happier news I authored a two part piece for a site called “I’m Taking Charge” and you can read it here:
I’ve been trying for a while to get back to normal but that normal is pretty much gone forever. That ship sailed and it’s not coming back. I am done with treatment except for taking daily Tamoxifen which inhibits my body from producing estrogen. So why can’t I just snap out of it?
I long for the days when my worries and stress didn’t come from cancer and its lasting physical and mental side effects. I still have numerous aches and pains, probably from the Tamoxifen and some residual soreness from my mastectomy and reconstruction surgeries. I have to admit too that I have lingering chemo fog, which affects my short term memory. Missing turns while driving. Thinking a thought and before that thought is even fully formed in my brain, it has flown the coop. This is actually only the tip of the iceberg. I am afflicted with many of these lingering effects.
When I recovered from meningitis in 2004 within the first year after diagnosis I had pretty much gotten back to normal, albeit with one left totally blind weird wandering eye. The chances of meningitis coming back were very rare. When I was recovering I was frightened because I nearly died, but after a year I felt like I was getting back to normal and there wasn’t a black cloud of doom following me around like I sometimes feel there is now. But I also had a baby to take care of and you moms know that when you have a baby it consumes all your attention. It’s a nice distraction from worrying about yourself.
Flash forward eleven years and I’m diagnosed with Stage III breast cancer. I finished chemotherapy and radiation by November that same year. I didn’t have a baby or anything else really to pour my now limited amount of energy into. I had to actually face this new version of me. Mostly I like her because she can be bad-ass. She fights for herself and others. She appreciates so many of the little things now. She doesn’t take life for granted. She’s made positive changes in her life. But she doubts. Doubts her ability to beat cancer. Doubts her ability to put cancer in the back seat. I would say Cancer has at least moved from the driver’s seat to the passenger’s but it is my hope that it can be moved to the back seat and eventually to like a trailer that will one day be unhitched. A survivor I know added to her FB profile under work history, Works at “beating breast cancer” and I thought fuck yeah-it IS a job! And a full time one at that. So I added that to mine. You see there is no cure for invasive breast cancer. It can be treated but there is no guarantee. While chemotherapy can work wonders, it cannot guarantee a cancer-free future. Neither can radiation. Even a patient who is “100% clinically responsive” cannot be assured that the cancer is gone. Microscopic cells can remain. Nobody can tell who has been cured and who hasn’t because breast cancer can return at any time, be it two or twenty years later. I guess you can say you were cured when you die many years later from something else. When breast cancer returns, it usually shows up somewhere else, i.e. bones, lungs, liver, brain, etc. If this happens it’s not bone cancer or lung cancer. It’s metastatic breast cancer, or as we pink warriors say “bone mets” or “brain mets.” It’s also Stage IV. Since I will never be considered “cured” my oncologist says the term he and his colleagues use is “NED” no evidence of disease. I hope there is no evidence of disease for the rest of my life, which I further hope will be a long time from now, after I’ve found my purpose, after I’ve become a grandmother.
So I saw The Boob Whisperer earlier this week. He seems very pleased with how my foobs are shaping up and so am I. There is still the little dog ear extra skin thingy on the right side so he wants to see me again in three weeks to reassess it, and he can fix it in a simple outpatient procedure if necessary. He has done such a phenomenal job and I am amazed at how good they look and feel. Yes I’m still obsessed with feeling them all the time, I can’t stop myself. I test different spots to see if the numbness is gone too. I wish I could feel them with someone else’s hands.
Since we are almost at the end of January I must face the fact that I am doing kind of pretty very bad with my new year’s health resolutions. I still need to lose weight because being overweight is a risk factor for breast cancer and I have not cleaned up my diet as much as I should. Since my cancer was estrogen receptor positive-which means that the cancer feeds off of estrogen, I take medicine to block the estrogen in my body; but there are foods that are high in estrogen, especially conventional meat and dairy. I strive to buy organic meats (no beef or pork) and dairy but I need to be more vigilant. I’ve actually switched to almond milk because it has no dairy or soy, but I still eat the sugary Greek yogurts. I have avoided pre-packaged foods for the most part but not completely, and the same goes for hair care and personal products. I bought some natural deodorant (not patchouli which smells like Raid) because there are conflicting reports about the aluminum and parabens in deodorants being linked to breast cancer. My oncologist believes in moderation when it comes to dietary dos and don’ts, but is it enough? I mean if I don’t make these natural/organic changes across the board 100%, is that going to cancel out the changes that I have made? If I switched from CoffeeMate to Almond Milk but then still eat Chobani Flips, cream cheese and margarine am I taking one step forward and two steps back? I drink diet soda at the movies and we all know what kind of crappy chemicals are in that, so if I switch to water but still eat the popcorn with the suspicious-not-really-butter-but-butter-flavored-substance is it a wash? I also have a vent clip in my car that my friend says is toxic which I keep forgetting to remove. I don’t know what the answer is. I know people who feel very strongly about using natural products and eating natural and organic foods and who live their lives this way, and this is by no means an inexpensive endeavor.
Before cancer I felt like the worst thing eating poorly would do was make me fat. Now I have this manic view of everything in my life, like I’m trapped in a carcinogenic bubble. #everythingwillkillyou
Believe it or not something commonly said during breast cancer discussion is “hey at least you get a boob job out of it.” Or even “at least you get a free boob job out of it.” There are boob jobs and there is boob reconstruction. They are not even a little bit the same. Yes I have implants but that’s where the similarity ends. A boob job or BA (breast augmentation) basically takes what God gave you and enhances it and it’s a cosmetic choice. You still have your original boobs and your nipples. Breast reconstruction after a mastectomy starts over from square one, from the ground up, often characterized as a salvage job. If you’ve had a breast augmentation, please know that nothing about your experience even comes close to mine. I have nothing against boob jobs at all and I’m fine talking about your boob job, as long you understand I can’t relate because I didn’t have a boob job.
Some mastectomies are skin sparing or nipple sparing. That was not an option for me. Once the nips are gone, so is any sensation. You know how good your nipples can feel ladies? That zing that can go from your nips to well…..other places? Yeah well, GONE. But hey if nipples are part of the price to stay alive, take them, but I’m pretty sure you get to keep your nipples with a boob job. And it’s not “free” if you have to pay insurance copays and deductibles. Most ladies that get boob jobs go home and after a short healing period, will admire their new boobs, buy new clothes, and celebrate. Cancer survivors go home after reconstruction and see more scars and wonder if or when their cancer may return.
As fabulous as they are, because The Boob Whisperer is so awesome, my new breasts are sore, numb, nip-less and scarred. And though they feel pretty good they’re still not like real boobs. I would trade them for my old (albeit without the tumor) God given breasts in a heartbeat. Am I glad I have boobs again? Very. Do I view it as “getting a boob job out of it?” No, that’s just dumb. I’ve previously mentioned how I frequently see articles about what not to say to cancer patients and survivors and how I don’t agree with many of them but comparing a boob job to reconstructed breasts is something I can safely say JUST. DON’T.
I’ve been doing pretty well with my anxiety and living with my fear of recurrence. I was starting to think maybe I was getting a handle on it. Then a couple weeks ago I started getting some mild lower back pain. I had two epidural injections for a pinched sciatic nerve in 2015 and I’ve read that sometimes stiffness and pain can return to the spine, especially in a not super active 50 year old. I also know that when breast cancer recurs it usually shows up as metastasis in other places like your bones. My four month oncologist appointment is in a few weeks so he’ll do blood work and if my back is still sore I will tell him. This shit is really keeping me on my toes you guys.
This week I just want to share this video by Holley Kitchen. She lost her battle with metastatic breast cancer last January. I was too afraid at the time to watch it and really think about it because I was also initially diagnosed at Stage 3. But her message is too important so I’ve watched it several times and now I need to share it. I would have liked to know you Holley.
It’s been two months since my expander-implant exchange. I recently heard the term “Drop and Fluff” bandied about on RealSelf.com which is a plastic surgery social media site. I had never heard about this term and it created really weird pictures in my mind. Apparently there is a lot going on behind the scenes in your body. After implant placement there is swelling of the tissues combined with tightening of the chest muscles. This can cause them to look tight with the upper portion of the breast looking somewhat like a hump and then constricting the tissues causing the implant to look smaller than it actually is. It can also make them look a bit further apart and even kind of upside down. As the swelling goes down those tissues loosen and the implants settle into a lower, more natural position which in turn makes them look softer and more rounded. Maybe that’s what mine have to do, I have no idea.
Unless you’ve been under a rock lately, you will have seen talk on the news about repealing and replacing the ACA or “Obamacare.” A few months ago I was concerned there would be no insurance companies in Maricopa County offering individual health plans because they were all pulling out of the market. Well as it turns out there is one company, HealthNet’s Ambetter. It is an HMO and my plan has a $4,000 annual deductible and $7,150 out of pocket maximum. On top of this, my monthly premium is $530 per month which includes a $178 subsidy so my premium would actually be over $700 per month. This is just for me. My husband and daughter each have their own plans which they’ve had since before the ACA went into effect which are much cheaper. In 2013 I reduced my hours to 30 (my choice) and went from employer based coverage to individual which made me subject to the ACA or Obamacare rules (and before you say wait-30 hours-employer has to cover you. Nope they called me into HR and said they needed me to work 29.5 so they didn’t get fined.) One positive thing the ACA did for me was prohibit insurance companies from dropping me or refusing to cover my cancer treatment due to it being a “pre-existing condition.” If I had gotten cancer prior to the ACA I would have had to get a full time job with benefits or be totally screwed. People shouldn’t go bankrupt trying to pay their medical bills and I know firsthand working in bankruptcy and collection law many years ago that it happened. A lot. It happened to wealthy people who became not so wealthy because of a catastrophic medical event. So the idea that individual coverage, like employer based coverage could not be discriminatory against someone with a pre-existing condition was a very good one to me and a no-brainer. The problem was there were way too many one size fits all mandates and regulations piled on the law. I think my plan had to have maternity benefits even though chemotherapy put me into menopause last year. Doctors I know have said that the ACA has made it more difficult and expensive for them to treat their patients and run their practices. Here in Arizona and some other states premiums have more than doubled.
I am dubious of politicians crying about how repealing and replacing Obamacare will “make America sick again.” Let’s face it, promises were broken. I couldn’t keep my plan and I couldn’t keep my doctor. I don’t care whose fault it is, it happened as a result of this law. And if Obamacare was so great why don’t you congressmen and women have it? And why did y’all immediately rush to exempt yourselves from it? They have the gold standard in health insurance that WE pay for. I guess we’ll see what happens in the coming months with the repeal and replace. Okay rant over.
My new foobs are feeling better and better you guys. The soreness is still there on the left side whenever I do something with my left arm and there’s still lots of numbness but they are really softening like real boobs. And the last vestiges of my stitches have finally dissolved. I think D cups were wishful thinking though. The Boob Whisperer thought I could have them but with the maximum volume silicone implant sold in the U.S., (800cc) I’m about a full C. A very perky C. I was reading some comments in a private breast cancer Facebook group and there were women taller and heavier than I am saying with 800 cc they barely fit in a B cup so it’s really about your height, frame and body type. I am 5’6, have broad shoulders, am medium to large boned and moderately plus-sized. 800 cc will look different depending on your body type. This makes sense because I’ve seen plastic surgery stories on RealSelf and women were always asking “how many cc to get to (whatever bra cup size)?” The doctors would always reply that it varies from person to person and this is true with augmentation and reconstruction.
Now because of the little bit of extra skin on my right side, which he already trimmed during my exchange surgery, it doesn’t look perfect but he wants to watch it for another few months. If it doesn’t resolve on it’s own he will make an adjustment, which I knew might be a possibility. In clothes they really look great and with a bra they look magnificent. BUT! I don’t think I can ever wear a bra again. I put one on for the first time the other day and it was comfortable as far as bras go and I’d been professionally fitted with it, but I couldn’t stand it. I can’t explain it but I felt like “Gah! There’s something suffocating me, GETITOFF!” Like when you accidentally go to bed with your clothes on after a night of partying and wake up feeling like you’re in a straight jacket. I took it off after like three hours although I reverently hung it up in the closet rather than smash it into a drawer. This was the first time I’d worn a bra since my mastectomy last May so maybe I will get used to it again eventually. I tried a sports bra and that was actually worse and looked awful. Or I could just skip it, which The Boob Whisperer prefers anyway, at least for now.
I’ve done some research about this bra business and as far as I can tell, the boob-stifling has been going on for centuries. But about a hundred years ago, Mary Phelps Jacob designed what would become the modern bra. It was mostly just just like two handkerchiefs sewn together and fit like a loose halter top. She created it as an alternative to the whalebone or metal corsets women were stuffing themselves into at the time. Apparently there was a French study done a few years ago-of course it’s the French-wherein the benefit of wearing a bra was called into question and ultimately debunked. Of course there were plenty of criticisms of the study and it further stated if you’ve worn a bra for years there’s no benefit in suddenly ditching it now.
One thing this bra situation has made me do is examine my scars and really take them all in. Sure I’ve seen them on a daily basis but I don’t think I fully absorbed the magnitude of them. There is about a two and a half inch scar from my chemotherapy port below my right collar bone. There are six inch mastectomy scars below each foob and two inch scars near my underarms where the lymph nodes were removed. There is an eight inch scar on my back from the flap surgery and an oval scar on my left foob where that tissue and muscle from my back was transferred. Also, my entire left chest (minus the white-skinned flap) is a darker color from radiation a year ago. The scars are ugly for sure but they are also a beautiful reminder of my strength.
I participate in a couple of social media breast cancer groups, and one thing I’ve been seeing over and over are stories of women whose co-workers, family and/or friends say things like “oh I know so and so went through this and she didn’t miss any work” or “so and so was back to normal after (fill in the blank).” I’ve read so many stories about women being bullied and made to feel weak. Just reading all of these makes the steam bubble up and spew out of my head. I’m sure there are people who when they have an illness might milk the sympathy card but this is not what I am talking about. My own coworkers have been lovely, supportive and kind so I’m lucky, at least nothing untoward was ever said to my face and if it was, I would probably do bodily violence.
The trauma caused to your body by a mastectomy is unimaginable and horrific and you cannot even fathom it unless you’ve gone through it. There are all kinds of tissue, muscle and nerve problems because they’ve been sliced through. This pain and discomfort hangs around for months and years. And if you’ve had reconstruction too you can just compound that pain. In my case, I went into chemotherapy four weeks later. My breast cancer compatriot at work who was going through chemo at the same time, had to have six rounds, while I had four. Her chemo cocktail was also slightly different from mine. There are many different types of breast cancer and they all come with varying treatments, including different types of chemo. A third woman at work who’d undergone chemo ahead of us didn’t miss any work at all, not a single day. I am going to say right here and now, that is NOT the norm. It’s great that she was able to do that and I would say she is a strong woman, but that does not mean that my compatriot and I were not as strong, by any stretch of the imagination. It doesn’t mean we weren’t able to just suck it up. Number one, not all chemotherapies are alike. Number two, not all human bodies react the same way to chemotherapy. There are so many contributing factors you can’t quantify. This leads me to number three which is do not ever tell someone going through chemo that “my friend so and so said it was a breeze.” Or that “my friend so and so was curled in the fetal position vomiting for three months.” I would say that I personally did better than some, and worse than others. I think my slow recovery had a lot to do with undergoing chemo, coming off the heels of a bilateral mastectomy. Radiation also causes fatigue, and in some people it’s extreme. Some people burn badly like I did. Others may get a mild sunburn. My hormone blocking pills cause me some substantial fatigue and joint stiffness. For other women, it can be severe. Women whose cancer was estrogen positive, which mine was, need to block the estrogen because it feeds the cancer. There is no standard answer for how much time you need to heal or to recover from cancer treatment.
I can only speak from my own experience but I worked as hard and as long as my body would allow and I am still not where I was before all this started. Please don’t judge any of my pink sisters (including me) based on our ability to bounce back from breast cancer treatment, because unless and until you’ve been there you don’t know what the hell you’re talking about.
I didn’t really have any strong inspiration about what to write about this week so instead I did something a little different. I wrote a poem-limerick thing.
One day I found out that my breasts, were going to be chopped off my chest. It was cancer you see, that invaded me, so I knew that the chopping was for the best.
Chemo was hard, and my chest it was scarred, then radiation really made me feel burned. But it was frying the cancer cells deep inside and I was convinced that the tide would soon turn.
My head had no hair and I honestly didn’t care because there were many worse things than hair loss. I covered my head with hats that were cute because itchy wigs and slippery scarves I did toss.
I found I can be funny, brave and strong. How had I not known this all along? God has been with me, so have my family and friends and so many amazing pink sisters, on whom I can depend.
One lesson I’ve learned is that life is not fair, but there is so much beauty and love and humor, that I can appreciate now and it’s because of that tumor.
What a difference a year makes. I’m actually keeping it like it is now since it takes all of three minutes to style it. My hair has been on quite a journey. I do miss not having to shave though, that was awesome.
At this time of giving thanks I consider just a few of my blessings.
1. I am here to celebrate another Thanksgiving and Christmas with my wonderful friends and family.
2. This holiday season I have breasts and hair (although I honestly didn’t care about not having them last year).
3. I haven’t gained back any of the weight I lost during treatment (although I don’t want to jinx myself when I’m going to be bombarded by sugar in the coming weeks).
4. I am still off alcohol (so all you guys on Facebook flaunting your drinks-you totally suck).
5. Although I have many new fears, I am trying very hard not to let them interfere with living my life and appreciating all that God has given me.
On the reconstruction front, I’m still a little sore but it’s improving. They are softening too. It feels so strange to have boobs again, but in a good way. There is still a lot of numbness which may or may not go away. I go back to The Boob Whisperer in three weeks, so I’ll be interested to hear how he thinks they are shaping up. I still have a fair amount of fatigue and I’m sleeping more than usual, although it’s pretty dark and cold now in the morning too. This morning it’s 63 degrees in Phoenix and if you’re not from Phoenix, understand that for us that is COLD. We have extremely thin blood here so anything below 70 requires at least a light jacket. We’re like reptiles who need to lay on a rock in the desert sunning ourselves.
A while back during my time of booblessness I wrote that it seemed like boobs were EVERYWHERE. It still seems like that to me. I’m very conscious of any boobs I encounter. But now I have my own and I’ve been wanting to show them off (in a tasteful, not slutty way of course). They are softening too, which is nice. The Boob Whisperer is a magician. I’m hoping that the spot on my right one fills in like he says it will, but in clothes you can’t tell it’s there. I find myself touching them all the time, even at work so I just hope nobody catches me copping a feel. It’s a very weird feeling because everything is still very numb. My breasts don’t really have any sensation but the muscles are still sore from the exchange surgery two weeks ago.
I was talking with my coworker who had a boob job from The Boob Whisperer a while back and we went in her boss’ office and shut the door so she could see mine and I could feel hers for comparison. Hers were softer but I think I still have swelling. As we were coming out of his office her boss was coming down the hall and saw us and raised his eyebrows and said something like “uh oh that doesn’t look suspicious at all” and we started laughing hysterically. I thought to myself that I haven’t laughed like this in a long time. I hope this means I’m slowly getting back to normal (actually my new normal) which leads me to my next thought.
One thing I see from my pink sisters frequently is that once chemo or radiation is completed there is this sudden feeling of vulnerability. The safety net feels like it has been yanked out from under you. The other shoe is ready to drop at any moment. You’re thankful to be done with chemo and radiation but a part of you feels the loss of that frequent connection with your doctors and nurses. I felt this way very strongly and touched on it here several months ago. I’m feeling it somewhat again now that my reconstruction is almost complete (aside from 3D nipple tattoos and possible minor “adjustments”). I’ve been seeing The Boob Whisperer every week for seven months. Looking back to a year ago when my radiation was completed, I realize that my fear is still there but it’s softened if that makes sense. I wrote about needing vampire mind control to prevent cancer from being my first and last thought every day. I know now that those thoughts will likely always be there but the fear is not as acute as it was a year ago. I still get nervous with any new ache or pain but it’s not the abject terror it used to be. I want my friends and loved ones to know that our fight does not end when treatment does. We don’t wake up one day after treatment is over and say to ourselves “okay I’m cured” and just pick up our lives where we left off before cancer. It has become a part of ourselves and our daily lives and though the fear may fade somewhat into the background it will always be present.
Because I don’t really remember what my old ones before cancer felt like and I would like some kind of basis for comparison. My unveiling was last Monday and to say I am pleased would be an understatement. The first thing The Boob Whisperer said when he removed the bandages was “now remember this isn’t the final result.” And I knew this, they are going to “settle” and that could take up to six months and I may need minor adjustments when all is said and done. Honestly my first reaction was elation. I could work with this. They don’t match perfectly but they are the same size and look great in clothes. The right side that had the floob has a slight pucker in the lower right corner but it was WAY worse when I had the coconuts (expanders), and he said that the pucker should fill in. They seem to feel somewhat firmer than the old boobs and definitely perkier.
As of right now I am absolutely satisfied with the results and I am so glad I chose to have reconstruction. There were some rough patches where my resolve wavered because as I’ve said repeatedly, the seven month expansion process was PAINFUL, but in the end I’m so glad I hung in there. To the women who choose not to have reconstruction, I totally get it. It’s like, enough with the surgery already. I could have easily been a Flatty Patty for the rest of my life and there was much about flatness I embraced. It’s a deeply personal decision and I respect and admire all breast cancer survivors whatever their chosen path.
Reconstruction was not all about how I look but also how I feel. Let me tell you what else reconstruction is not, at least for me. It’s not a panacea. I still worry about cancer returning. I still see the scars every day from three surgeries and my chemo port. I see the overly tanned from radiation left side of my chest, even a year later. Reconstruction has returned a piece of me that was taken by cancer and I don’t just mean “well yeah, my boobs, duh.” There are so many seemingly insignificant moments that once you’ve lost your breasts, now become noticeable. Like tying my shoe laces. I used to bend over and feel my breasts against my arms and leg as I was tying. Sleeping without breasts felt different. Standing in the shower, all of a sudden there was my stomach when before I looked down and saw breasts. Just little movements and actions that I’d do throughout the day felt different and each one was a reminder of breasts now gone. Now I feel more like my old self and I don’t automatically look away from my silhouette in the mirror. I was pissed at my family yesterday because when I started talking about the 3D nipple tattoos they were all “why do you need those, who’s even going to see them?” ME that’s who! The 3D nipple tattoos will be my denouement. Monday I go back to The Boob Whisperer and I hope he’ll remove the steri-strips, and perhaps I’ll get some more information about what to expect over the next few months.