If you would like to participate in The Daily Post’s Weekly Photo Challenge:
Thanks for visiting!
If you would like to participate in The Daily Post’s Weekly Photo Challenge:
Thanks for visiting!
Well, I have returned from my first adventure…but things have been far too hectic and I have been far too exhausted (and ill with cellulitis) to write about the experience yet. But it is a post I am looking forward to sharing! In the meantime, I thought I would return with a photo challenge post. Thank you so much for all of the likes and comments on my last post — and for being there to cheer me on…
These may not be the greatest photos, but to me, they are wonderful representations of this week’s photo challenge topic, “love.”
There were many contenders, but I am far too tired to add them all (and I don’t want to bore you!), so here are just a few. I may come back to add more at a later date…
Thank you for reading!
It was Christmas and my littlest sister decided that after all of my chemo and surgeries, the best gift she could give me would be a little companion to help me weather the remainder of my cancer treatments. So she chose this sweet little mini dachshund and presented her to me with a red ribbon around her furry little body. Ginger has spent many hours snuggling with me and giving me comfort in the two years we have been together. And she is a wonderful reminder of the special kind of love sisters sometimes share.
Another Christmas photo… I was sick and so tired. And my sweet miniature schnauzer, Mattie, snuggled up next to me. I had so much to do to get ready for a busy day of making our Christmas rounds that day, but I couldn’t resist the opportunity to lay there with my special girl. And I am so glad that I did because she died suddenly of cancer a couple of months later. She loved me unconditionally and I miss her as much today as I did when she first died.
And my boys…
Weekly Photo Challenge: Love
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Weekly Photo Challenge: Delicate
If you would like to participate in The Daily Post’s Weekly Photo Challenge:
This will probably seem like an odd post, but I’m going to present a snippet of my afternoon from two different perspectives for no other reason than “just because.” Thanks for indulging me.
Across the room, a girl sits in a recliner with a small table beside her. She is sipping a large cup of tea. The tea bag tag dangles gently over the edge of her cup. The girl stares off into the distance and a smile crosses her lips. What is she thinking about? Perhaps she is remembering a lover from her college days? Maybe she is picturing a basket of puppies?
Wait… judging from a frame most would describe as thin and a belly that is unmistakably large and rounded, it’s clear that she must be pregnant — she must be thinking of the baby growing in her womb. Yes.
Her eyes light up as she thinks of the “baby duckling yellow” paint color she and her husband chose for the baby’s room this morning. “It’s not too masculine, not too feminine, and it will be easy to paint over if we decide to change it when the baby gets a bit older.” She bites her lip as she wonders how she is going to wait for the next three months to meet her new baby. She has slipped her calendar out of her purse and is making a list of baby names now. It’s the same list she and her husband have been coming up with every night before bed. But she thinks she might have a revelation and “the one” might pop into her head today.
She continues her list.
She is mostly alone as she relaxes in the large open room filled with beds and curtains and chairs just like hers. Mostly. She has a number of visitors over the course of the next hour. Each one stops by to chat briefly with her. She laughs and talks with them individually. And then her visitors move on, one by one.
She continues to sip on her unusually large cup of hot tea. Her final visitor is dressed in white and bears the name of her grandmother. Her hands are full, but with what? It’s hard to say. The visitor dressed in white sits across from the girl and then leans toward her for an unusually long time. She holds what looks like a long, shiny pin or needle in her hand. Odd. But when she stands up to walk away, her hands are empty and she and the girl are both smiling. She now has something pinned to her chest — a flower perhaps?
Just as her name is called she looks at her list. She is clearly pleased with her accomplishment and is excited to share this new name with her husband. It was her grandmother’s name.
She slides gracefully out of the chair (well, as gracefully as a pregnant woman can) to meet the woman who beckoned her. They walk happily down the hall together and slip into a room nearby. The door closes behind them.
When they emerge, they are smiling and walking again. The girl is stroking her belly, as if to comfort the baby inside. She returns to her chair as the lady in white brings her a cocktail with one of those cute little paper umbrellas poking out from the rim of the glass. She relaxes for a bit longer before rising from her comfy chair, bidding adieu to her friends and walking out to greet her waiting husband.
I am sitting in a large, sterile room. Across the way, I see a girl…or a woman, really. She looks biologically young, but I can tell she has been weathered by experience. Something tells me that she probably still thinks of herself as a girl in the quiet morning hours when everyone else is asleep. So I will indulge her and call her “a girl.” It’s the least I can do.
The woman, uh, girl, is sitting in a reclining hospital chair. Beside her is a small table where alcohol swabs and some medical paraphernalia sit. She holds a large, lidded Styrofoam cup, the largest one I have ever seen, in her hands. Dangling on the side of the cup I see a tea bag tag. She looks at the bit of wisdom the tag has to dispense, rolls her eyes, and takes a sip from her straw. Odd that she is drinking hot tea through a straw. Maybe she’s one of those women who don’t want to stain their teeth so they drink their tea and coffee through straws?
Just then a nurse walks over to her and asks her to sign a form stating that she understands the risk of drinking this tea. WTF?
Well, it’s not your average tea. It’s tea that has been infused with a radiocontrast agent. Is it radioactive tea?
The girl stares off into the distance and a smile crosses her lips. She is thinking of a sandy beach in a warm place far away. “If this is more cancer,” she thinks, “I am moving to that beach.”
She puts her hand on her protruding belly and secretly hopes one of the nurses will ask her if she is pregnant when she signs the next consent form. It’s an odd thing to hope for, almost masochistic, really. She pictures what she would say in response to the question. “Of course I’m not pregnant. I’ve been gutted. Every part that makes me a woman (except the “V” one) has been stolen from me. I am empty inside. Dead inside. And, oh, this? It’s edema. My belly is swollen with fluid. No baby. I’m here to see if it’s cancer in here, not a baby. My fate was sealed at 33 when those lumps in my breast were written off as nothing.”
Of course no one asks her if she is pregnant. They all know the answer. They all know why she is here.
And she wouldn’t have the guts to say what’s on her mind, anyway. She wouldn’t want to hurt or bewilder anyone. She wouldn’t want to ruin anyone’s day. So she thinks about what she would really say. “Nope, just fluid.”
She snaps out of her daydream when a second nurse asks to see the port in her chest. They’ll need it later.
She slips her calendar out of her purse and tries to recall the appointments she has scheduled for next week. Her fuzzy chemobrain has made it impossible for her to remember much these days. She soon finds herself drawing seagulls and starfish in the margins. “Oh, to have my toes in the sand right now and to be anywhere other than here,” she dreams.
She shifts gears and makes a list of everything she needs to do when she leaves. Her 3rd graders — twin boys — will be waiting for her. It will be dinnertime.
She is mostly alone as she sits in the large open hospital room filled with curtains on tracks and not rods, hospital beds and hospital reclining chairs just like hers. Mostly alone. A number of nurses stop over to check on her progress with “the drink” or to ask her to sign a form. She smiles and makes small talk with each of them. And then her visitors move on, one by one. She continues to sip on her unusually large cup of hot tea. Through a straw. That’s probably so she doesn’t spill the giant cup of lukewarm possibly radioactive tea on herself.
Her final visitor is dressed in white and bears the name of her long deceased grandmother. Nancy. Her Nanna was one of her most favorite people in the world. She watched her die a painful death from cancer when she was 8 through 9 years old. “My kids are 8, too,” she thinks.
The nurse sets up a tray with everything she needs to access the girl’s port.
She holds a long shiny needle and asks if the girl likes to hold her breath or if she applied the EMLA cream in advance to make it hurt less.
The girl laughs, “No, no need. Just go ahead.” She has been poked and cut so many times it’s not even funny.
The needle punctures her upper right chest skin and enters her port. Now they will be able to push the intravenous radiocontrast agent through her chest.
The nurse dresses her port with a tegaderm and gauze. With the little yellow butterfly clip sticking against the transparent tegaderm, it almost looks as though the girl has a flower pinned to her chest. An ugly flower, but a flower nonetheless.
Just as her name is called, she looks at her list. She is already tired, but smiles at the thought of being able to sit down with her kids when she is done.
She drags her body from the chair to meet the woman who beckoned her. They walk quietly down the hall together and slip into a room nearby. The door closes behind them.
When they emerge, they are smiling faint smiles and walking again. The girl is doing that thing she does — looking dizzy and as though she is going to hit the deck. She strokes her sore belly. The nurse asks her to lie down until she feels better and says that people who receive the contrast through their ports need to wait 10 minutes for observation before they can leave anyway. The nurse brings the girl a drink. This time it’s plain cola. Nothing added. The nurse puts a bendy straw in the Coke. The straw wrapper bears the name of a famous medical supplier. “Yikes, a straw from a medical company! It probably cost $50,” she thinks.
When her 10 minutes is up, she is so ready to leave that she walks out in her disposable drawstring hospital pants and stuffs her slacks in her bag. It’s time to go home.
So I was sitting in one of those recliner-type hospital chairs drinking oral contrast in preparation for my CT scan when I started thinking about perspective. Of course the “girl” above is me…
Thanks for reading… Your comments and “Likes” brighten my life…
So I spent Thursday night through Friday morning in the E.R. with one of my sons. I was reluctant to go in, but his 106.2 degree fever and listlessness made it necessary. Though no one likes the emergency room, I have a developed a particular and overwhelming distaste for the whole hospital scene. And, sadly, this hospital overnight prompted me to realize how “jaded” I’ve become when it comes to the severity of symptoms and illnesses in general. Call it another side effect of being a cancer patient.
What I am afraid to admit out loud — and even really hesitant to share in this, my somewhat anonymous blog, is that I am beginning to wonder if cancer is interfering with my ability to be the kind of parent and person I want to be (and the kind of parent/person I used to be).
While procedures and blood draws and surgeries and medications and side effects and…(well, you get the picture) have become the norm for me, they are not the norm for everyone. And, fortunately, they are not the norm for my children. But I sometimes lose sight of the fact that everyone hasn’t spent what amounts to months (when you add up all of my time as an inpatient and outpatient since my cancer diagnosis in April 2010) in hospitals and cancer centers for surgeries, life-threatening infections, chemo, radiation, appointments, monoclonal antibody infusions, port blood draws, tests and procedures. Or that not everyone is waiting to find out if that lesion in their brain is malignant or if their liver function and lab values are so poor because the cancer may have metastasized to a vital organ.
I see my new perspective reflected in my everyday life. Someone will tell me about a symptom they’re experiencing or about their cold or papercut and I try to be supportive and kind. In my mind, though, I sometimes find myself wandering off to thoughts of how upsetting it might be for them if they had to have their breasts cut off and their lymph nodes dug out, if they faced each day with a constant headache, if they had to manage life with lymphedema, or if they lived their lives with unrelenting neuropathy (a leftover gem from the chemo) that gets so bad that it interferes with their ability to concentrate/type/hold a glass.
Or when I hear a pregnant woman my age talking about heartburn or swollen ankles and I am consoling on the outside, but inside I am thinking about how the large masses in my pelvis and ovaries prompted two painful surgeries and the loss of what remained of all but one of my female parts (in case you are wondering, it rhymes with bagina). And then I drift off to a mental picture of the baby girl I will never get to hold in my arms because:
a.) You need a uterus to have a baby — and ovaries and Fallopian tubes and a cervix lend something to the process, too. But all of these things filled my gynecologic oncologist’s specimen jars and were sent off to a lab and probably a garbage bin somewhere.
b.) Who would allow someone with my medical history to adopt a baby? As much as I would love to be here to raise a new little baby, let’s face it, I am clearly a flight risk.
I thought of a “c”.
c.) I know surrogacy has gained popularity. But that’s not even an option for me because my eggs were stolen. Okay, they weren’t stolen. But it feels like they were.
And I have that heartburn and those swollen ankles (and legs), too. Two years of chemo and Herceptin messed up my kidneys and made edema a big problem for me. And I have my dusty bottle of Nexium for my acid reflux disease, but I stopped taking it because I take so many pills that I’d rather look at those pretty purple capsules than ingest them.
The bottom line is, even though I want to feel sorry for you because you have a cold, inside I am dreaming of what it would be like if a runny nose and congestion were my biggest medical problems. Not so deep down I am wishing I could just take some NyQuil, hop into bed, and wake up the next day and be all better.
This is NOT me. This is NOT who I am. I
am was a kind and thoughtful person before cancer left my spirit beaten and bruised. Even if I felt like I like was dying, I would put your illness ahead of mine. I would comfort and take care of you. I would ask what I could do to be there for YOU. Even if I had just had surgery myself, I would gladly and altruistically chop vegetables and brown chicken for your homemade chicken soup. And I would do it without a second thought.
Though my ovaries weren’t technically stolen, I feel like the deeply compassionate person I used to be was.
While this isn’t great news for most of the people in my life, it is worse news for my twin 3rd graders. I fear that there will come a time when I devalue their medical experiences, their illnesses, their scrapes and bruises, their throat cultures and their trips to the doctor for a flu shot or a blood draw, or the sessions with the nebulizer to that help with their asthma. And that’s just not good.
So I am trying my best to undo some of what the cancer has done. I am making a conscious effort to put the severity of some of my experiences aside to look at things as they are for other people and to avoid comparisons. I am trying to give my boys the special hugs they need for their scraped knees and to talk them through their fears of having blood drawn or shots given. And, as was the case this week, I am putting my own exhaustion and pain and sickness aside (as much as I can, anyway) to care for these boys who need me. Case in point — even though my brain shouted, “Don’t do it!” because I am leukopenic and neutropenic, I climbed into my son’s hospital bed to cuddle with him because he was worried about what was going to happen to him… While I can’t guarantee that it always will, my heart won this time.
I am really trying to do what counts for my kids. But I may still look at you with envy when you tell me you have a cold.
*Special thanks to Donna & Robert Trussell for allowing me to use their fantastic cartoons*
After hearing yet another “young” person’s cancer story, I feel absolutely compelled to write this post. It’s too late for me to prevent my cancer, but it may not be too late for you or your mother, sister, daughter, friend, wife, husband, son, father, aunt…
I am writing today to urge you to limit your intake of the harmful chemicals found in plastic. Because the dangers of plastic use have been largely ignored by the powers that be, you probably ingest more chemicals than you even realize each and every day.
As a breast cancer patient diagnosed in my early thirties, I am literally sick over this. I am actually quite surprised that I haven’t posted about this topic sooner because it is something I think about every day. Until I was aware of the danger (at some point after my cancer diagnosis), I ate and drank from plastic packaging at least as much as the average consumer. I used plastic water bottles and those plastic travel coffee mugs all the time. I left water bottles in the hot car and drank from them without a thought. I consumed soups and other foods from cans, used plastic food storage containers, plastic wrap and plastic bags, and I didn’t think twice about handling store receipts coated with BPA (bisphenol A, a hormone-disrupting chemical often found in plastics and register receipts and linked to cancer, obesity, heart disease and other diseases).
Can I blame my cancer on my exposure to the chemicals in plastics and other products? No, probably not entirely. But do I think this played a role in encouraging my illness? Yes, definitely. As a young person with no family history and no risk factors for breast cancer, I feel pretty justified in pinning some of the blame on an environmental cause, especially since I am in a segment of the population that has seen an increase in breast cancer rates since plastic use became so widespread.
Plastic is EVERYWHERE. Food, drinks and personal care items like lotions and cosmetics are packaged in plastic more often than not. This makes chemical exposure almost inevitable. I have tried to eliminate plastic from my life (and from my children’s lives) but have determined that this would be far too costly and time consuming for tired ol’ me. In the world we live in today, plastic exposure is virtually unavoidable. So I have refocused my energy on limiting our plastic use.
Some of my favorite ways of reducing our plastic exposure:
-We drink from glasses and mugs whenever possible. I have recycled most of the kiddie cups that once filled the shelves of my
cupboard (and I wish I could take back the years I used plastic sippy cups for the kids). We make a concerted effort to use non-plastic drinking vessels now.
-I reuse my empty glass Snapple bottles. I fill them with water (and other beverages) and carry them in lieu of a plastic water bottle. I usually keep one or two with me and have a couple in the fridge so I can just grab them and go. Of course you can do this with any glass bottle. Not only will you be making a healthier choice for yourself, but you’ll also be making a good choice for the environment.
-We store food in glass and never in plastic. At first this was really difficult because I just had a few glass storage containers. I made makeshift containers by putting plates on top of bowls as lids — not a good use of space! But I have since asked for Pyrex for Christmas and birthdays and my little collection is growing.
-We have reduced our use of canned foods. BPA is often found in the lining of food and baby formula cans.
-I avoid leaving cosmetics, lotions and other liquids packaged in plastic in the car. You may have heard the warning about not leaving water bottles in the car for the same reason — heating plastic encourages the release of toxic chemicals.
-We don’t use “steam in the bag” foods like frozen vegetables.
-Whenever glass is available (for food, beverages, personal care products), I’ll choose it over plastic, even if it costs a little bit more. We are on a REALLY tight budget, but I think it’s worth it. Unfortunately, though, it’s not usually a choice — glass is often hard to find. Even the organic hormone-free milk at my grocery store comes in a plastic container!
Why am I publishing a post like this? It is not because I’m having a bad day and need to vent (that’s just a coincidence!). It is not because I am trying to blame someone for the hell I have been through in the past few years. It is because I want to save someone else from the pain and the loss I have experienced and will likely continue to experience. It is because I want to save YOU.
While I realize you may not be able to nix plastic from your life entirely, I hope you will please do your best to cut out as much plastic exposure as possible.
And PLEASE ask your friends and family and everyone you care about to do the same. If you are worried about sounding like an alarmist or a nutcase or a conspiracy theorist, take comfort in the fact that there is enough evidence to support the cancer – plastic link to validate your plight.
You can also consider joining an email writing campaign to urge companies to use safer packaging. Or sign a petition urging the FDA to ban the use of packaging that contains carcinogens. Here’s one asking the FDA to ban BPA, a carcinogen found in cash register receipts, in many of the plastics we eat and drink from, and in the bodies of more than 80% of Americans! It will just take a minute and could make a big difference:
I googled “breast cancer plastic” and at the top of the list of search results (other than images of plastic ‘breast cancer awareness’ items — that’s another blog post!), I found an article that was featured on one of my favorite go-to sites for breast cancer information and support — breastcancer.org. While I love bc.org and think the article is great for creating awareness, I do disagree with one section. It lists “safe” plastics, but based on my research, it seems there may be no truly “safe” plastics. Plastic = Chemicals. Right now the focus is on BPA which was long considered “safe” by the FDA (we’re talking half a century here!). I believe it’s just a matter of time before more of these chemicals are studied and deemed carcinogenic. In the meantime, here is the breastcancer.org article:
Of course I hope you will share this post with everyone you know and I hope you will work to reduce your chemical consumption. But I know that’s a lofty dream in today’s world. So, please do whatever you can. Whether you do one of these things or all of them, know that I am proud of you.
If we can prevent even one more person from getting sick, we’ve done something good.
If you have an idea for a way to reduce plastic use, please share it with us! Thanks!
I am not a ranter by any means and I have been pretty quiet about “Pinktober” and what has come to be known as “Pinkwashing” in breast cancer circles, but seeing October 13th advertised as “National No Bra Day” and as a “fun” way to support people with breast cancer has pushed me over the edge.
Are you kidding me? How on earth could a day where girls and women are encouraged to post and share photos of their braless breasts and to walk around with their nipples poking through their shirts be “supportive” for women who are living with or who have died from breast cancer, or who have managed to ‘complete’ the arduous treatments and disfiguring surgeries required to put them into remission?
I think the answer is simple. It is not.
Like so many women–and men–who have faced this disease, I have lost my breasts to cancer. Though I had a terrific surgeon, it was a physically and emotionally disfiguring surgery.
The cancer had gone so deep and was so extensive on my left side that it was at first inoperable. Even after months of chemo, my surgeon took as much tissue and skin as possible and went deep into my axilla (underarm area). The cancer had metastasized to my lymph nodes and had invaded them to such a degree that they broke open to allow the cancer cells to go beyond the walls of the nodes. Because of how invasive the surgery was and of how much nerve damage, etc. resulted, it was not only extremely painful then, but continues to be a source of pain and phantom sensations that affect my entire upper torso even today.
I required over a year of physical therapy just to be able to raise my arms again and I still don’t have full function or range of motion. And, because of pain, swelling, conspicuous compression sleeves and gloves, I am constantly reminded of the lymphedema that resulted from the surgery and loss of my lymph nodes. Oh, and the life-threatening infections that forced a couple of hospitalizations and four months of massive doses of antibiotics this summer (almost 2 years after my original surgery), are also a little reminder of some of the things that the bilateral mastectomy and lymph node surgeries have left me with. And there is so much more…
So the thought of seeing bra-less women flaunting two body parts that I have lost to cancer — more than I already see this on a regular day — does not feel all that supportive. In fact, it feels quite the opposite.
I think of myself as an open-minded person. I do my best not to judge others or their beliefs and ideals. I have a pretty good sense of humor and am usually the first to poke fun at myself. And I make light of breast cancer and my struggles, treatments and their side effects, lack of breasts, fear of death, etc. fairly frequently. It is how I cope. But, given what I have been through, I think I have earned the right to joke and make light of how this terrible disease has affected me. But if you haven’t been there or taken care of someone who has been there, then you should think twice before you publicize a day that jokes about putting the first body parts we usually lose to this disease “out there” on display even more conspicuously and then labeling it as an activity that helps our ’cause’.
We live in a society that makes a huge hoopla about breast cancer while at the very same time trivializing the seriousness of the disease. How can we be so contradictory?
While I am beyond thrilled that breast cancer is no longer a taboo issue and that people are talking about it, the commercialism has gotten out of hand. There is nothing pink and rosy about breast cancer, yet it has been pink-washed to death. It is a serious disease that kills.
And while I do think we need more awareness and education (about metastatic disease, about how young women CAN develop breast cancer, about how women (young and not so young) DO die from this disease, about the importance of research, etc.), I don’t think we need the kind of awareness that buying a jar of salsa with a pink ribbon on it brings. While I hardly ever see “awareness” products addressing the topics above, I can’t go anywhere without seeing pink products. Heck, I just have to look out of my front window to see giant pink garbage totes. The stores are filled with pink as companies try to make a buck off breast cancer. If you look carefully at these products, you’ll find that some of them don’t even donate a cent to breast cancer awareness, support, research, etc. And oftentimes those that do make a very minimal donation — and not always to organizations/programs where the money is well spent. Case in point — during a recent trip to my grocery store’s pink breast cancer section, I found (after reading the small print) that the maximum per item donation to the breast cancer “cause” was $0.35. An abysmal $0.35 for a $25.00 plastic coffee mug! And, guess what, once that $0.35 reaches “the cause,” a portion of it is lost to overhead, salaries and advertising costs.
One of the most unfortunate issues here is that well-meaning people are willing to buy pink products, even pay a little extra, because they think they are helping to do something to “cure” breast cancer or to provide “hope” to breast cancer patients. Why is this sad? Because those dollars spent on pink key chains, pink beer koozies, pink boxes of crackers and pink plastic water bottles could be going to fund research into metastatic disease, better (and less harmful) treatments, the elusive “cure” and, dare I say it, PREVENTION.
My intention is not to offend or to hurt the feelings of anyone who is genuinely trying to help, but I think it is important for you to know the truth. So please put your bra back on, put down those pink garbage bags (unless you really like pink that much!), that pink “awareness” pepper spray keychain, and that pink breast cancer “awareness” vibrator and dildo (yes, I’m blushing and yes, these are real things that their merchandisers say will “help you raise breast cancer awareness” — though they are shipped discretely in plain, unmarked boxes so no one knows what you purchased) and send a few dollars to an organization that devotes their fundraising dollars to research. You just have to do a bit of homework or read the labels on those pink items to see where your money is actually going. [There are pink products out there that do help to fund research, etc. — they seem to be in the vast minority, but they do exist.]
And, if you don’t like homework, here are a few great organizations — there are many others, but these are some of my favorites:
*** Metavivor.org ***: [A terrific organization…] From support groups to funding vital research, our programs sustain the power of hope. Passionately committed patients ourselves, we rally public attention to the urgent needs of the metastatic breast cancer (MBC) community, help patients find strength through support and purpose, and make EVERY dollar count as we work with researchers to regain longevity with quality of life.
*** http://www.standup2cancer.org/ ***: [Another great one — and it’s not just for breast cancer. Note that your donation will NOT be BREAST CANCER-specific, but will be directed toward multiple cancers. Since you are reading a breast cancer-specific post I know this may or may not be in line with your philanthropic goals, but if it is, SU2C is an excellent choice.] “Our mission is to fund collaborative, translational cancer research to bring treatments from the bench to the bedside faster, and save lives now.” Since Stand Up To Cancer was founded in May 2008, we have granted $161 Million Dollars to ten Dream Teams of scientists and researchers, one international translational research team and 26 high-risk, high-reward Innovative Research Grants. 100% of public funds go directly into research grants. A portion of the funds that are raised from major donations and third-party fundraising go towards administrative expenses and overhead.
Other Important Organizations:
***A number of people diagnosed in my age bracket have emailed or commented about how Young Survival Coalition (YSC) has helped them. This organization is the premier global organization dedicated to the critical issues unique to young women who are diagnosed with breast cancer. Founded in 1998, YSC’s mission is to serve the roughly 13,000 under 40 (often an under-recognized contingent of the breast cancer population) who are diagnosed with breast cancer each year.
YSC helps these young women by providing support and health information to see them from diagnosis to long-term survivorship. The nonprofit tackles issues specific to this population, like early menopause, effects on fertility, more aggressive cancers and lower survival rates. From YSC, “compared to older women, young women generally face more aggressive cancers and lower survival rates. More and more evidence tells us that breast cancer before age 40 differs biologically from the cancer faced by older women.” Thus, the organization also advocates for increased studies on young women with breast cancer. YSC offers resources, connections and outreach so women feel supported, empowered and hopeful.
***If you are interested in making a difference for through an organization specifically targeting Inflammatory Breast Cancer, I recommend http://www.theibcnetwork.org/: Inflammatory Breast Cancer (IBC) is a rare and highly fatal form of breast cancer that is not typically discovered by mammogram and often occurs prior to standard breast cancer screening age recommendations. Our all volunteer board is focused on education and funding research for this 200 year old orphaned form of breast cancer. No Lump Still Cancer.
…or consider a group that helps cancer patients and their families cope with their illness. For example:
CancerIsAJerk.org — This is a charity my dear friend jme set up to help families touched by cancer. You can make a financial donation or if you’d like to have a tangible something to wear to show your support, you can purchase a “Cancer Is a Jerk” t-shirts with all proceeds going to help actual families touched by cancer. You can also contact jme through the charity if you’d like to sell shirts as a fundraiser with all proceeds going to benefit cancer family applicants in general OR designate a specific family of your choosing.
And don’t underestimate the value of local organizations. My local Breast Cancer Coalition is a perfect example. The Breast Cancer Coalition of Rochester‘s mission is to make the eradication of breast cancer a priority through education and advocacy; to empower women and men to participate fully in decisions relating to breast cancer; to provide support to those coping with a breast cancer diagnosis; and to focus research into the causes, prevention, treatment and cure of breast cancer.
Also local for me is The Karen Carson Crane Foundation. Founded by Karen’s siblings after she died of breast cancer, the mission of the Karen Carson Crane Foundation (“the KCC Foundation”) is to provide support and financial assistance for individuals affected by breast cancer; to encourage breast cancer patients to have the strength, courage and passion to overcome their disease; to support local organizations that assist breast cancer patients; and to donate a portion of its fundraising dollars to organizations that research and promote alternative cancer treatment methods.
There are many other great organizations and groups out there — these are just a few.
And if you can’t help with a financial donation, consider volunteering your time or talents. Perhaps to local cancer patients — bringing a meal or knitting a chemo cap or scarf, or sending a cozy blanket are examples of ways to show your support. I remember when a small box of craft supplies was left on my doorstep when I was first going through chemo — what a gift that was — my kids loved it and it kept them occupied for a little while when I was really ill! Or consider volunteering (or providing non-financial support) at/for a local cancer center, hospital oncology floor, or for an organization that helps cancer patients and/or their families. [If you need help with finding a place to volunteer, etc in your area, please email me with your town/city name & I will do my best to help…]. There are many ways to show your support that don’t require $$.
And, of course, don’t forget to go for your regular mammograms and to feel your breasts when you can (and report any changes to your doctor) because doing these things IS important. It — what I can loosely call a self-breast exam (but which was really just washing myself in the shower) — is how I found my own lumps, about 17 years before I was due for my first mammogram (according to the recommended screening age back in 2009). If I had ignored my lumps and waited for that first screening mammogram, I can safely say I would have been long dead! So please pay attention to your body and your breasts. While the vast majority of lumps are benign, I still believe it’s always best to bring your breast changes to the attention of your doctor. Thanks for reading…
I will leave you with a picture that I believe is my best advertisement for Breast Cancer Awareness Month:
Side note: The ACTUAL National No Bra Day is July 9th annually. Someone had the great idea to do a braless day during October — Breast Cancer Awareness Month — to support “the cause.” Adding insult to injury, the day they chose — October 13th — is actually the one day out of the whole year designated for Metastatic Breast Cancer Awareness. Sadly, I’ve seen far more No Bra Day awareness advertising circulating around the web than I have Metastatic Breast Cancer Awareness Day info.
So I have been having these dizzy/fainting spells and an episode or two that looked like seizures. My neurologist wanted to do an MRI when I saw her last week, but I told her I didn’t think it was necessary. So she opted for an EEG.
I had the EEG early Thursday morning. It was pretty simple. They scrubbed areas of my scalp and affixed leads. Then they wrapped my head up with a gauze bandage to ensure that the leads wouldn’t move during the test.
I lay down in a hospital bed while they tested me with a strobe light, had me do a hyperventilation test, and then waited as I tried to fall asleep.
When I was finished, one of the technicians tried to wipe the blue gel out of my hair. She told me that I could go to clean it out in the bathroom since my husband and son (home from school because he had a stomach bug) were coming to pick me up and we were going on to other appointments. I opted to just skip the freshening up and walked out to the car to find my hair sticking up in places, with a visible sticky blue gel helping to create a familiar look for me–“the disheveled patient”.
The person conducting the EEG wished me good luck with everything and said the results would be forwarded to my neurologist next week and that she would likely call me after that.
I assumed the test results would be fine–and that I wouldn’t hear from my doctor until my next appointment with her in a couple of weeks.
But when I saw the hospital’s number in the Caller ID and then heard her message on Friday, I wondered how she had gotten the results so quickly. She said that she had my results and that she would try to call again. So I called her office, let her know that I would be home for the next hour (before heading to the cardiologist). They didn’t expect her to get back to me that day since it was already late in the afternoon, so when she called back 10 minutes later, I was a bit concerned–though the bigger part of me still thought she would say everything was fine.
When the neurologist told me they found an abnormality on my EEG, it didn’t sink in right away. She didn’t go into too much detail, but she said that they found “something” in my left temporal lobe. Especially given my cancer history, it is troubling. The concern is that the cancer has spread to my brain. She said that she would order an MRI with contrast–and that I couldn’t object this time.
If this is metastasis to the brain, I will be so ticked off. I made a deal with the cancer in the beginning. Stay away from the brain and… well, I forget what the cancer was supposed to get out of the deal. This arrangement reminded me of when I moved into my dorm room during my first semester at the University. It was a school filled with many well-off kids (though I was there solely because of scholarships and students loans), so you can imagine my shock when I saw a couple of cockroaches emerge from my roommate’s television during that first week. It wasn’t long before they took hold in the room. I was dismayed, but made a “deal” with them. “You can have the rest of the room, but stay off my bed and my desk,” I pleaded with them.
Things were going okay as I waited out the days until the exterminator was supposed to come to our dorm room. Everything changed when I came home after a late night at the chemistry lab. There they were on my desk, even on the phone, and darting through my photo frames. It was ridiculous, but I was angry because the roaches had violated our agreement. I called and requested that the exterminator come sooner and when that didn’t work, I actually moved to a new room where I never saw another roach.
I wish it were that simple with cancer… That I could just move down the hall and never have to worry about it again… Alas, it is not that simple.
Spread to the brain has been one of my biggest fears since my diagnosis 2 1/2 years ago. I watched my grandmother die a painful death from brain cancer when I was a little girl and the experience scarred me for life. She was one of the most special people in the world to me and she died when I was just 9 — a year older than my twin boys.
One of my biggest fears since that traumatic period in my youth was that I, too, would develop brain cancer and suffer the same fate as my grandmother. Of course, if this is actually a tumor, it is likely a spread of my breast cancer and not a tumor that originated in the brain like my grandmother’s was presumed to be. But the effects would be essentially the same, especially given it’s location in the left temporal lobe. If my children have to watch me suffer in the way that my grandmother did, I think I would have to rethink my plan of fighting until the end. I don’t think I could leave them with with the same images and experiences that have haunted me my entire life–because I know how it will end.
I hope it’s just a mistake and I hope I won’t have to worry about that…
*If you like this post, please visit this link & click “Boost” on my page. Thank you. http://www.breastcancerblogs.org/blog/24423/cancer-in-my-thirties *
I’ve had these lumps in my left breast since last year. They were small when I first felt them, but now they are not only much larger, but clearly visible when you look at my breast. It has been so long since I actually felt my breast (I know, I know! I’ll explain why in a minute) that I was shocked to feel how much bigger they had gotten.
It was last summer when I told my doctor about them. She felt them, said that they “did not feel like cancer” or “like anything to worry about” and she sent me on my way. She said that at my age, the likelihood that they were anything was remote. Since I’d had lumps in the other breast a few years before and she had sent me for my first mammogram back then (at 29) and they had turned out to be benign, I didn’t push it. After all, out of all the cancers in my family history, breast cancer was not on the list.
But as I put my shirt back on after my exam last summer, I heard the words, “This will come back to haunt you,” very clearly. I heard them so clearly that it was as if someone was speaking the words to me. But I did not listen.
This was when I stopped doing breast self exams. Since these were not my first lumps and since the others had been evaluated and were benign, I figured that I obviously did not know what I was looking for. If she could feel these new lumps and could identify them as nothing to worry about by touch alone, then I obviously didn’t know what I was feeling. I decided that doing self exams would only alert me to more benign lumps and take more of my doctor’s time. I felt silly even bringing these new lumps to the attention of my doctor last year. I didn’t want to seem like a hypochondriac. Women my age don’t develop breast cancer and I don’t have a family history. At least that’s what I thought back then…
But now that the lumps are so much larger, I have a bad feeling. And I’ve recently learned that women my age DO develop breast cancer and that a lack of family history DOES NOT make you immune.
Still, I waver between being concerned and thinking my concern is silly…
As you’ve probably assumed from the title of my blog, I am a cancer patient. I first found the lumps when I was 33. I was diagnosed exactly a month after my 34th birthday.
It sounds so simple when I say it like this. But this experience has been anything but simple.
I know there people out there who have faced cancer and who have claimed that they were grateful for the disease. I’ve even heard it referred to as “a blessing” by a select few.
I will tell you right now that I will never be one of those people. Ever. From my first real encounter with the disease (as a child watching her grandmother suffer and waste away from brain cancer), I knew that I hated cancer and that I could never see it as a blessing.
That being said, I cannot say that facing my own cancer and dealing with the aftermath of my diagnosis has been all bad. Yes, the disease itself and the treatments, side effects, surgeries, fear, complications, etc. have been pretty awful. I could downplay how rotten these things have been, and I certainly have done this plenty in my “real life” to make it seem like I’m fine and like it hasn’t been as bad as it has at times. But I won’t do that here. I don’t think trivializing these elements of my experience will do anyone any good, so I will do my best to be honest with you.
What I mean by “not all bad” is that I know there are amazing people I have met or gotten to know better and experiences I have had that I wouldn’t have had if I hadn’t heard those horrible words two years ago. And that my children are better AND worse off because of my diagnosis. Better because they have been embraced by people who love them and who will be there for them if I happen to not be here one day. And worse because, well, having a mother with cancer is really crappy for a kid on so many levels. And because they might have to bury me when they are still children — and there’s just no way to put a positive spin on that one.
One day I will tell you about some of the incredible people who’ve touched my life along the way. About the amazing people who have rallied around me (and my boys) when we’ve needed support. About the friendships that have been strengthened by cancer, and the relationships that didn’t survive. About my sons’ best preschool friend and his parents, who went above and beyond for us. About my children’s kindergarten teachers and a classroom full of parents who showed up on my doorstep with dinner for my kids or who took them to Chuck E. Cheese when I was too sick from chemo to do it myself. About a school and a school district that came together to make sure my “little” ones had presents under the Christmas tree and that we never ran out of toilet paper when I was struggling to manage these things on my own. And about nurses who’ve been my caretakers and my friends. And people who made me feel like I’m not alone despite what could easily be an extremely isolating and lonely experience.
I will also tell you about tragic losses. And despair. And fear. And sleepless nights. And hot flashes. And night sweats. And dreams shattered. And about how this disease has changed me. About doctors who have been wonderful. And doctors who have failed me. I will tell you about my treatments. About serious infections. About what it’s like to be a young woman who takes pills that suck the hormones out of her body. About what it is like to lose almost all of the parts that make you female by the age of 35. And what this does to your body and your self-esteem. About where the cancer was. About how I found it. And why it took months for me to have that crucial mammogram.
And one day I will tell you about my life “before” cancer. About the people who helped to shape me. About my family and my oldest, dearest friends. About the things that made me “me” before this disease. About the things that still make me “me.”
And so much more…
This is my story, for better or worse. I plan to make it an honest account of what it is like to be given a life-threatening diagnosis at an age when your own death shouldn’t feel so imminent.
At the time of this first writing, I feel that I have so much left to share with my children and so much more to teach them. So, more than anything, what you are reading is meant to provide a written record of my life for my children and a way for me to help them know and remember me and our story if, one day, I am not here to share in their lives. But a part of me hopes it will be more than that and that maybe it will bring someone who is going through something similar a sense of comfort or a bit of virtual support. Or that maybe it will serve as a cautionary tale and that someone, somewhere might pick up the phone and schedule that appointment they’ve been putting off.
For whatever reason you are here, I am grateful that you are. Thanks so much for reading…