Sometimes You’ve Got To Laugh: Leslie Jones

Leslie Jones shares her advice for living with stage IV breast cancer.

When Leslie saw her doctor about a lump in her breast in 2009 it luckily turned out to only be a cyst. It was around this same time her doctor encouraged her to undergo BRCA testing because her mother was diagnosed with breast cancer at age 27. She eventually learned that she was a carrier of the BRCA1 gene mutation and filed that info under “Things To Take Care Later.” Not long after, she discovered another lump and convinced herself it was just a cyst again.

NAME

Leslie Jones

Read Leslie’s 2013 submission here.

GIVE US AN UPDATE ON YOUR HEALTH

The end of September will be my fourth year of living with Stage IV breast cancer and two years of no evidence of disease.
For the past six weeks, I have developed a severe rash over my radiated area and I was finally able to get in to a dermatologist who believed I have what is called radiation recall. Radiation recall can occur during radiation, or years later. This has been a very frustrating time for me as I have been in an out of the emergency room and no one seems to know how to treat it except for steroids.
I have been getting an Xgeva injection for the past year every three months and the side effects have been miserable. Fortunately, after much convincing to my oncologist she said I could stop taking this particular chemotherapy.

 

WHAT IS YOUR BEST PRESCRIPTION?

Although this is a cliche, laughter truly does help. When everything gets to be too much my sister will crack a joke completely off the wall and sometimes you just have to laugh until you cry.

Aquaphor is definitely your friend through radiation.

A bald head is awesome! For a brief time, you don’t have to worry about styling, curling, hair cuts etc!

TELL US SOMETHING AWESOME.

This past May I went back to work! After being a stay-at-home mom for seven years, and then the diagnosis I decided I needed to do more than just sit around my apartment. I was only able to work a few hours at a time because the inflamation in my foot was unbearable, however three months later I’m pulling 9-10 hour shifts! I absolutely love my job and the people that come into my store. I’ve met fellow breast cancer survivors and always give a hug when they come through my line.
Sharing my story has also allowed me to give back. If I can help just one woman feel better about their own cancer diagnosis, then it’s worth it!
It was definitely difficult to believe there was life after the chemo, radiation, surgeries, but I am living proof you can beat Stage IV breast cancer! 

Leslie Jones shares her advice for living with stage IV breast cancer.

Photo Source: Untitled photo by Alex is licensed under CC BY 2.0 / Text added to original

Personal photos courtesy of Leslie Jones

Ask and Don’t Apologize: Sarah Malin-Roodman

Sarah Malin-Roodman shares her best advice on how and why to ask for help during and after a breast cancer diagnosis. Sarah Malin-Roodman was diagnosed with thyroid and breast cancer in the span of three years. I had forgotten how much I could relate to her circumstances until I re-read her post from last year. Both of us had new babies when we were diagnosed and both of us struggled with the loss of our fertility. Here’s an update on the amazingly strong Sarah.

NAME

Sarah Malin-Roodman

Read Sarah’s 2013 submission here.

GIVE US AN UPDATE ON YOUR HEALTH

None. I am delighted to report that I am just in maintenance mode now. I only have to do regular check-ups for both my thyroid and breasts. Even my hot flashes have settled down over the past year — or maybe I have just learned to take them in stride! After two years of too many surprises, I was just craving a boring life. 

WHAT IS YOUR BEST PRESCRIPTION?

Ask for what you want. If there is not a good connection with a doctor, ask for another with no need to apologize. You deserve to feel comfortable. If you need help with meals or managing life, ask your friends and family even if you feel shy. They will probably surprise you because they just want to help. If you feel lost, ask for support. Breast cancer is (unfortunately) common, so there are lots of people who share your experience. 

TELL US SOMETHING AWESOME.

The best gift I gained from having cancer, not once but twice, was a clarity and perspective on life. My first cancer diagnosis came only months after my daughter’s birth. At the time, it was challenging to simultaneously be a new mom and consider my mortality. But it forced me to strip down to the most essential concept of “I’m ok, she’s ok” and nothing else matters. Now, in my post-cancer-but-still-have-to-worry life, I hold onto that simple thought.

Sarah Malin-Roodman shares her best advice on how and why to ask for help during and after a breast cancer diagnosis.

Photo Source: “Wide Open” by storebukkebruse is licensed under CC BY 2.0 / Text added to original

Personal photos courtesy of Sarah Malin-Roodman

Changes Must Be Made: Megan Stull

Megan Stull shares her advice on what changes must be made in life and in the breast cancer community post diagnosis.

Megan Stull is a thirty-six-year-old attorney for a tech company living in Arlington, Virginia. She does not have children, but is an adopted mom to her “fur baby,” a beautiful tortoiseshell cat named Kona. I also am a wife to a wonderful husband, a daughter to two amazing parents, a sibling to a wonderful sister, and an aunt to two tremendously talented children.

NAME

Megan Stull

HOW LONG HAS IT BEEN SINCE YOU WERE DIAGNOSED?

I was diagnosed at 11:00 a.m. on Monday, October 22, 2012. I sat alone in a conference room at my office as I received the news that I had invasive lobular carcinoma in my right breast. Later on, I’d find out that it was Stage 1A with no lymph node involvement, which was a great blessing.

HOW DID YOU FIND OUT YOU HAD BREAST CANCER?

It all started in a shower on a business trip, when I noticed just the littlest change in my right breast. I made a mental note to bring it up during my annual examination with my doctor. When I did, she was pretty convinced that it was nothing, but gave me a slip for an ultrasound anyway. That one ultrasound turned into two ultrasounds and two mammograms, followed by a core needle biopsy. Everyone along the way thought that the area was a benign fibroadenoma or a cyst. So, getting the call that it was breast cancer was a real shock to me. Even the radiologist who delivered the news expressed surprise.

TELL US YOUR REACTION TO THE DIAGNOSIS.

My husband and I decided the weekend before I received my results that we would “celebrate the good news” by planning a spectacular vacation. Those plans were not made at that time (although we have taken a couple of spectacular trips since).

Getting the news was stunning. I was surprised because I am by my nature a very emotional person. But, I shut down into an almost “cruise control” mode. I methodically called my husband, told him I had breast cancer, and said I had to go because I had a ton to do. We could talk about it later. I told my mother, and I could feel my words sucking the air out of the room she was in. Again, I said I would update her with more information later. I remember my sister starting to cry on the phone, and I told her that I had no time for that. She’d have to cry on her own. I needed to make appointments.

It was like after the breast cancer diagnosis, I instantly grew some armor to make it through the tests and processes. I had no time to be scared, and I was too naive and uninformed to really know the perils that I could be facing. For instance, the idea that it could have spread never crossed my mind until much later.

WHAT WAS YOUR TREATMENT PLAN?

I started with a lumpectomy, but that surgery did not yield clean margins. Rather than having a re-excision, I decided to have a bilateral mastectomy. My reasons were tied to aesthetics, because the first surgery had taken away more breast tissue on my right side than had originally been expected. I followed my oncologist’s recommendations to have four rounds of chemotherapy. I now take Tamoxifen, and will continue to do so for at least three to four more years.

HOW HAS TREATMENT AFFECTED YOUR WELL-BEING, IF AT ALL?

Survivorship is hard. The fear of recurrence is ever-present. Every anomaly in your body creates angst. You can’t have a headache without a fear that it is cancer crossing your mind.

In many ways, I am constantly surrounded by illness and death. I hang out with other cancer patients and survivors, and I help them through treatment. Some people don’t make it. That always is terrible. But, I feel a duty or a compulsion to remain involved. I know what it is like to go through treatment, and I want to be there to help other people. It gives my experience meaning.

I end up second-guessing myself a lot and trying to figure out why I got sick. I ask whether I exercised too much. Did I eat the wrong things? Did I have too many cocktails? Did I use the wrong beauty products? Is this hereditary? It’s very easy to write a narrative where you blame yourself for having cancer.

All of that said, there is a lot of good in my post-cancer existence. Understanding that life can change in an instant makes you value the present more. I see “everyday things” around me, and I realize that they are precious. Seeing people hug one another elicits a huge emotional response from me. I remember being scared to hug during chemo for fear of getting sick, and now I love having the opportunity to embrace people who are important to me. I try to enjoy my life more. I try to work more reasonable hours. I take the opportunities to go on trips with my family and friends. In all, I find myself being willing to take more risks and not to bypass opportunities to do wonderful things.

HAS HAVING BREAST CANCER INSPIRED YOU TO DO SOMETHING GREATER WITH YOUR LIFE?

As an attorney, I am an advocate. And, I always have subscribed to the concept of paying it forward by mentoring law students and undergraduates.

That attitude and skill set has carried over into my post-cancer life. I am a mentor with the SOS group (Survivors Offering Support) run by a local organization called Life with Cancer. In that role, I assist women going through cancer treatment, and I serve as a resource to help them formulate or answer questions about their experiences. I have become very active with my local Young Survival Coalition (YSC) Meet-Up, and I am honored to have made many friends through that group. YSC gives women diagnosed with cancer under the age of 40 a forum to have their specific concerns addressed, and to build a network of fellow survivors to help them through all stages of the breast cancer process.

Raising awareness is also very important to me. I am anxious to tell my story because my diagnosis was the direct effect of two women who I knew who were diagnosed under the age of 40. If they had kept their cancer a secret, I may have never followed up when I found that strange area in my chest. One of these women is thriving and loving her life, and I continue to see her as a role model for survivorship. Sadly, I went to the funeral of the other of these women a month before I was diagnosed, but I believe it is my duty to carry forward her legacy as a survivor.

Finally, I want to keep the fundraising fires burning to find a cure for all cancers, but especially for breast cancer. I did the Avon Walk For Breast Cancer in New York City last year, where my dear friends Natalie, Meghan, and I raised around $20,000 to help other women through treatment and to fund research. And, I am currently the captain of a Making Strides Against Breast Cancer team for our local walk in Washington, D.C. this year.

SHARE YOUR BIGGEST STRUGGLES AND HOW DO YOU MANAGE THOSE?

The biggest struggle with breast cancer was the pain that I perceived that my illness inflicted on my loved ones. The most prominent example is my husband. My husband is the most wonderful, extraordinary partner that I could have ever dreamed of having. He stood by me through every appointment, every test, every surgery, and every chemotherapy treatment. He put me first even though he had just started a new job. He was willing to put everything on hold for me or to work odd hours to be with me. He made me feel beautiful even when I had no hair, or when we were cleaning my dressings after my surgeries. I look at this man, and I wonder constantly if I could ever be that wonderful of a partner, and if I ever could repay that outpouring of love. I just hope I could be there in the same way for him. I have managed these feelings by being clear about my gratitude to him and by trying to be the best wife that I can be. I also have tried to embrace opportunities to experience joy together now that I am well, and to make the most of even the mundane aspects of our time together.

FROM YOUR EXPERIENCE, WHAT ADVICE DO YOU HAVE FOR OTHERS WHO HAVE BEEN DIAGNOSED?

Breast cancer does not end when you finish treatment. There are physical effects of treatment (e.g., crazy looking toe nails, new hair colors and textures, scars, etc.). There is fear of recurrence. There are lifestyle changes that you need to make in response to your diagnosis, such as tweaks to your diet or exercise routines. Having cancer stays with you even if you no longer have the disease in your body.

The other thing that is important for me to convey is that women are still living with and dying of this disease. Too often, women with metastatic disease are not made part of the discussion about breast cancer. These women are pure inspiration, and their strength is undeniable. I was fortunate to be diagnosed at a early stage, but I understand that is not the situation with everyone. In the fog of pink that is October, it should not be the women perceived to have “beaten cancer” who are deemed most inspirational. Those of us who have had breast cancer know the real story. And, that story is that there is no person who is braver, stronger, or more worthy of our attention in “Pinktober” than our sisters who are still fighting this disease every day.

Follow Megan on Twitter:  @meganannestull

Megan Stull shares her advice on what changes must be made in life and in the breast cancer community post diagnosis.

Photo source:

“A Study of Apples 1” by Artotem is licensed under CC BY 2.0 / Text added to original

Personal photo courtesy of  Megan Stull

More Than Cancer: Catherine Brunelle

Catherine-Brunelle
Catherine was diagnosed with breast cancer and treated in 2010 at the age of 27. In the summer of 2013, she and her husband set out to start a family and learned that the cancer had metastasized in her lungs. She is currently living with metastatic breast cancer. I hope to meet Catherine someday because this girl knocks my socks off.

NAME

Catherine Brunelle

Read Catherine’s 2013 submission here.

GIVE US AN UPDATE ON YOUR HEALTH

My health is doing well. The hormone therapy is still working, and the nodes in my lungs are slowly shrinking.

I have to live with the next scan always being on the horizon, and the anxiety of what that scan might show. But so far so good. And that feels great. May it be that way for a long, long time (at least till I turn 85).

WHAT IS YOUR BEST PRESCRIPTION?

Allow yourself an identity that isn’t about cancer, and nurture that side of yourself whenever and however possible. Life goes on, even after a metastatic diagnosis.

TELL US SOMETHING AWESOME.

I’m hosting a Podcast for writers over at OttawaWrites.com! That happened as a result of self-publishing my beautiful novel, Claire Never Ending – which means (!!) since my post on your blog last year, I’ve actually produced the book. Claire Never Ending has truly been my most AWESOME thing this past year. The Claires represent so much of my heart, and how I like to see myself fitting into the world, whether or not my husband and I ever have a family. Their stories give me hope in deep and lasting ways.

So, along with being Bumpyboobs, I’m also Catherine the Writer. In 2015, I hope to become Catherine the Traveller and set off for adventures.

catherine-burnelle

Photo Source:
Woman Photographer by Pedro Ribeiro Simões is licensed under CC BY 2.0 / Text added to original
Personal photos courtesy of Catherine Brunell

Pain Meds and Laughter: The Lighter Side of Palliative Care

Late Saturday night, I received a lovely email from a woman who explained that her step-mom was a regular reader of my blog. The email went on to read that her step-mom, Karin, was currently in palliative care after being diagnosed with metastatic breast cancer and that she didn’t have much time left. Karin and her step-daughter, Marsha, wrote the following piece together and I am honored to share it here.

Please keep Karin and her family in your thoughts.

I didn’t want to write this blog! Partly because I wanted to keep what my family has been going through for the past month private. I also thought that people might take offense to some of the things and Karin and I have laughed about during our daily visits – things that have helped me see that palliative care and dying aren’t that scary. But, Karin asked me to write this, so it’s with a heavy heart that I dedicate this to her memory and to the staff at Riverview Health Centre. Cancer sucks, but palliative care helps everyone cope just a little easier.

I have spent the past three weeks in Winnipeg to be with my family following Karin’s (my step-mom) stage IV breast cancer diagnosis. It’s not the first time my family has heard the dreaded “C-word” – that happened almost two years ago. But, that time Karin’s chances to beat this thing were great. She would have to undergo chemo, a mastectomy and radiation, but afterwards all of our lives would be back to normal; or so we thought. Flash forward one month ago – no that’s not a typo – in the last month all of our lives have drastically changed. One month ago, Karin started complaining about flu-like symptoms, aches, pains, headaches, and then she fainted…That’s when she ended up at the hospital. It’s there that we learned that her Inflammatory Breast Cancer was back, but not it had metastasized in her brain and spine. At first we were told the prognosis was six months to a year, but a few days later the doctors decided that transferring her from the Victoria Hospital to Riverview’s Palliative Care Unit was her best option with the short time remaining. There’s a longstanding joke in Winnipeg: “No one comes home once they go to Riverview!” For a lot of people, palliative care is a scary world, because it is a place where loved ones go to spend their last days. But, there’s another side that is not often talked about. Palliative care units, such as Riverview, allow patients to maintain their dignity while caring for the patient and the family members, but letting us know that it’s okay to laugh. Basically, they help all of us to see that dying isn’t that scary. My past three weeks in palliative care have at time been hard, but many of my afternoons have been filled with joy, laughter and a lot of heavy narcotics! Ok, the narcotics were for Karin – but I sometimes had to press the button – until the doctors upped her dosage. I’ve tried to capture the lighter moments of this situation because these are the moments that our loved ones, like Karin, want us to hold onto when they pass and what the staff at Riverview have managed to give us these past few weeks.

Something that has stood out for both me and Karin is the fact that both the geriatrics and palliative care units share the same floor. We figured that it makes the transfer to the dark side, oops…I mean East Wing, a little quicker! Comparatively, the palliative care wing is much quieter than the geriatrics unit. The only exception is that there are more call bells and IV poles buzzing every few minutes than on the other side. In fact, geriatrics seems to be the party wing with their daily walks, occupational therapy sessions and rowdy games of bowling and miniature golf! Needless to say, Karin and I have decided that the palliative care unit needs a social director, or at the very least, a representative at these daily outings. Maybe it was the pain meds talking or the side effects of the brain mets but we have spent our afternoons dreaming up ways for Team Palliative Care to complete and dominated against the geriatrics unit! When Karin got her head shaved, a side effect of the four days of radiation treatment she had, we talked to the nurses about hosting a fashion show where we’d decorate her “beautiful” hospital gown and IV pole. Let’s be honest, all of these grandiose ideas are nonsense, but boy, does it make us laugh. Actually, we have everyone laughing, from the occupational therapist who works with Team Geriatrics to the nurses we’re trying to enlist for our fashion show. Heck, even Karin’s parents were laughing when we talked about the need to get her campaign for Social Director off the ground because we didn’t know how much time Karin and the voters had left to make this happen! All of this might sound random and a little awful, but these inside jokes – or possible hallucinations – is what allows us to cope with the fact that Karin is dying. It also helps us have fun, so that the final days don’t seem so painful.

Besides the caring staff and the individual attention that is given to each patient, the best thing about palliative care would probably be the drugs – I mean, the “prescribed pain medication.” A good part of my three weeks has been spent making sure that Karin gets her fix whenever she needs it. In normal circumstances, doctors would be hesitant to give patients the amount of med that Karin is on because, as few of the student nurses pointed out to us, they are “addicting forming.” Really? Is this really going to be a problem? They shouldn’t have told us about that because between dreaming up social committee activities for the wing, we also started exploring the possibility of opening a Detox-Palliative Care Unit, you know…to help the terminally ill patients that have developed a drug addiction, detox in their final days. Once again, the nursing staff were kind enough to humor us by jumping in on the nonsense. At least once a day, we would joke about Karin’s newly developed drug addiction and the fun stories, hallucinations, and great rests they bring. These jokes not only helped lighten the mood and the heaviness of the situation, but sometimes they helped numb the pain a little – for both Karin and us loved ones that would otherwise have to watch her suffer. The doctors and nurses can’t take the pain away but they do give us tools (i.e., medication and gentleness) to help manage or numb it a bit. In many ways, the laughter has also been a way to manage the pain for all of us.

Apparently there’s two things that happen when you become a Palliative Care patient: 1) You start worrying about trying to take care of everything and everyone with the time you have left and 2) You pretty much get a Free Pass to say, eat and do anything you want! Karin quickly understood this rule and took full advantage of it! In the early days of this diagnosis, let’s be honest, it was 3 days before I arrived in Winnipeg, Karin made sure to take care of the nitty-gritty details! But, when I got there she realized that there was one more piece of “unfinished business” that she had to take care of – finding me a husband! She quickly made it her daily mission to try and convince Super-Tony, her day nurse, that I was a super catch. In the real world, this would normally lead to very awkward moments. But, not when your a member of Team Palliative – that’s because you get to say, do, and eat anything, without worrying about social faux-paus and embarrassing your loved ones. Despite Karin’s efforts, I will be returning home to Quebec single and without Super-Tony! But everything else is taken care of – Karin has made sure of that! We have said our goodbyes. We have laughed and we have cried. We have said everything that needs to be said and then some! My dad, little brother, her two teenage kids, and everyone else that has loved her will get through this and will be alright – Karin has made sure of that and she has done so with grace, dignity, love – she hasn’t needed to use her Free Pass!

I came to Riverview three weeks ago, and on Monday, I will be defying the odds by going home, but sadly Karin won’t! The doctors and nursing staff can’t cure Karin’s cancer and one day soon she will lose this battle that she started almost 2 years ago! But what they have done is managed all of our pain, given her the respect and dignity that she deserves, while reminding us they it’s okay to laugh and continue to make new memories; all of which make death less scary. Thank you Riverview!

Sleep with angels my friend!

{Edited:  Karin’s battle against breast cancer ended peacefully. Marsha thanks everyone for your support and encouragement these past few weeks.}

It’s This Simple: Mary Killian

Mary Killian was diagnosed with stage IV breast cancer 22 years ago. Currently disease free, she gives a simple tip on staying bone healthy.

In 1993, Mary Killian was 30 years old and diagnosed with stage IV metastatic breast cancer. Like Cathy’s story, I go back and read Mary’s experience when I worry about a recurrence. Mary underwent high doses of chemotherapy, a bone marrow transplant and fourteen years of Tamoxifen. It’s been 22 years since her diagnosis and this May she’ll watch the son who was only nine months old when she was diagnosed graduate from college.

NAME

Mary Killian

Read Mary’s 2013 submission here.

GIVE US AN UPDATE ON YOUR HEALTH

No. Another year of no disease — 22 now!

WHAT IS YOUR BEST PRESCRIPTION?

I was never a big exerciser in my younger years, but for the last seven years, I have been walking four miles/weekday with a friend (year-round in all kinds of weather!). I feel that I’m in better health and fitter than I’ve ever been. I’ve been able to reverse some of the bone loss I’d sustained since I began menopause at age 31.

I’ve been NED for 22 years, so, fortunately, breast cancer is no longer part of my daily life. But I never forget how fragile life is and appreciate every day as a gift.

Tell us something AWESOME, something completely out of the box.

Navigating daily life after treatment was not always easy, especially dealing with the side affects of 14 years of Tamoxifen and very early menopause followed by a hysterectomy. But, honestly, the most awesome thing has been being around to see my boys grow up. My older son, who was just 9 months old at my diagnosis, will turn 22 next month and graduate from college next May.

Mary Killian was diagnosed with stage IV breast cancer 22 years ago. Currently disease free, she gives a simple tip on staying bone healthy.

Photo Source:
“Sport Shoe Shopping” by LotusHead
Personal photo courtesy of Mary Killian

9 Tips To Help You Through Chemo: Dacy Yee

Dacy Yee shares nine tips and advice on how to care for yourself and your family during chemotherapy treatment.

Dacy Yee is a mom to a 6 year old daughter and 19 month old son from Southern California. Diagnosed in 2013 with stage I HER-2+ breast cancer, Dacy says her baby saved her life. She shares an extensive list of tips and advice for anyone newly diagnosed and undergoing chemotherapy. Dacy has extensively documented  her breast cancer experience on Instagram.

NAME

Dacy Yee

HOW LONG HAS IT BEEN SINCE YOU WERE DIAGNOSED?

I was diagnosed Oct 1, 20013 with DCIS. But after my double mastectomy in November, it was discovered that my cancer had grown so aggressively, it was actually Stage 1, Her2Neu positive and had grown outside of the milk ducts. 

HOW DID YOU FIND OUT?

I always say my baby saved my life. I was breastfeeding him, and had planned on breastfeeding him for a full year. I was even juggling the often awkward and difficult, pumping at work thing to accomplish this. I ended up getting mastitis on my right breast and my OB required an ultrasound to rule out an abscess before prescribing the antibiotics. After the tech ruled out the abscess on the right side, she said, “Let’s just scan the left side, since you’re here.” And, that’s how we found it… it wasn’t through my regularly scheduled mammogram. And since it was so aggressive, if we would have waited, we really would be telling a very different story right now.

TELL US YOUR REACTION.

I felt my world just crumbling. I immediately pictured a life for my husband and children without me… and it broke my heart in a way that I have never felt before, and never quite recovered from. I felt powerless and thought I would have to put a whole bunch of actions in place to make sure my kids and husband had everything they needed to have the life I was envisioning for them, even if it would be without me. I wanted to take care of them, and I hated the idea that they would have to grow up without me.

WHAT WAS YOUR TREATMENT PLAN?

Even though the original DCIS diagnosis is considered stage 0, and could be dealt with less invasively, we decided to go very aggressive and move forward with a bilateral mastectomy. We wanted to do everything in our power to put this behind us and not face this again 2-3 years down the road, wishing we had been more aggressive from the beginning. The biopsy from the mastectomy showed the Stage 1, Her2Neu positive, hormone insensitive nature of my cancer, which led us to 6 rounds of chemotherapy (taxotere & carboplatin and a year of herceptin). I finished my last round of chemo on 4/17/14 and am still going through the herceptin every 3 weeks until 1/15. I also just had my reconstruction surgery on 8/25/14, but am facing a minor complication, which may bring me back to the surgery table.

HOW HAS TREATMENT AFFECTED YOUR WELL-BEING, IF AT ALL?

I have so many notes about this on my instagram… here are the highlights:
1. Chemopause – Went into (hopefully) temporary menopause, complete with hot flashes, no periods, weight gain, etc., Still in it.
2. Arthritis – Along with lead legs, I’m just slower and in a more strained state.
3. Nails – I have pictures of this on my instagram too… The chemo just kills your fingernails and toenails. It was so scary looking – turned them black & brown, and almost lifted completely off. They are about halfway healthy now.
4. Mouth sores – The week after chemo, my mouth would have this awful metallic taste and I’d have to ward off mouth sores by rinsing with salt water 5xs a day.
5. Sun sensitivity – Ultra sensitive to sun and my hands and feet turned super dark!
6. Bloody noses – Constant bloody noses. I’d have to stick a q-tip slathered in vaseline up my nose several times a day to keep it from bleeding, but even that didn’t stop it completely. One day, I woke up in a mini pool of blood that scared the sh!t out of my husband.
7. Neuropathy – My fingers and toes were so numb… I couldn’t be trusted with a knife! Fingers still are.
8. Hair – Obviously, lost my hair, eyebrows, eyelashes. Post chemo, when I was drawing my eyebrows in, I became allergic to the makeup I had used for a long time… chemo can make you ultra sensitive and allergic to things that never bothered you before. So I had an awful rash along my eyebrows for a while.
9. Heart function – Herceptin can affect heart function. I had one abnormal echocardiogram, so now I am monitored every 3 months by a cardiologist.
10. Immunosuppressed – Now, 16 weeks post chemo, I am still suffering from very low white blood cell counts. The chemo was so strong, that I am not bouncing back… not even at a level yet where I would be approved to receive more chemo now.

HAS HAVING BREAST CANCER INSPIRED YOU TO DO SOMETHING GREATER WITH YOUR LIFE?

I’ve been inspired to more appreciate my life. I am trying to no longer stress about the small stuff and I want to soak in, experience and spend more of my energy on all the good stuff! When I get pulled into the rabbit hole at work, I remind myself of the feeling I had when I was first diagnosed where I pictured my kids growing up without a mom. And I remind myself to be present with them so that I can enjoy this second chance I’ve been fighting so hard for.

Of course, it’s nice to get back to normal life – go to work, add value, feel healthy enough to resume normal life, so, again, I’m back to my balancing act where I want to do those things, and yet at the same time, enjoy more of the moments that are the true priority for me… not missing watching my daughter at soccer practice, making the swim meets, hosting a play date for her, volunteering in her classroom.

I’ve also found a great deal of confidence and strength in myself. A self described introvert, I’ve felt a ton of support in sharing my story through my social media channels – instagram and my facebook group. The therapeutic benefits of sharing the details of my journey with transparency there were unexpected… and I’m embracing the community that has reached out to support me.

SHARE YOUR BIGGEST STRUGGLES AND HOW DO YOU MANAGE THOSE?

At first, I struggled with avoiding the tendency to let my thoughts go to a tragic and dark place. But, once I had a plan, (go through with the mastectomy), I was able to really stay focused in executing that plan and that gave me strength, and something to latch on to. It was the idea that I was doing everything in my power to fight this… and once I had a roadmap in front of me with my action items, I was solid. I have excellent doctors who I trust and who I feel comfortable with and confident in. And I didn’t fight their recommendations. People often asked me things like… ” Why do you have to do 6 chemo treatments? So and so did 4. Why don’t you ask your doctor if you can stop at 4?” I didn’t want to try to bargain with them to get a lesser treatment – I wanted to know that I was doing everything possible, and somehow, that was empowering to me. My doctors and I became partners in this and that helped me mentally manage and stay positive for the fight.

FROM YOUR EXPERIENCE, WHAT ADVICE DO YOU HAVE FOR OTHERS WHO HAVE BEEN DIAGNOSED?

1. For 7 days post chemo, I would get hydration at the cancer center daily. I was going in for neupogen shots anyway, so I would take the extra hour there every day, and this would help me feel better. Also, I’d get kitril in my IV to ward off nausea… Stay ahead of the nausea!
2. I would rinse with salt water 5xs a day for a week after chemo to maintain mouth health.
3. Keep moving – I would try to get out and walk every day and I felt like it would help my body move things along – get the toxins out of my body.
4. My friends set up a meal train for us and they would sign up to deliver dinners to us on chemo weeks. This was super helpful. It’s an odd feeling to accept help, but do it. People want to help and this is a simple way for them to contribute.
5. Playdates – This really became a community thing… and the support we felt from my daughter’s kindergarten class was amazing. The parents would offer pick ups/drop offs and extra playdates to help when I was tired.
6. Transparency with kids – We were transparent with my daughter and she understood that the medicine mommy was taking would make me tired. We had a head shaving party and she wanted me to wrap her head when I wrapped mine up in a pretty turban. Her attitude was a mirror image of the energy we would put out there. She made me a cute banner on my final chemo treatment that said, “happy last cemow”. She also takes all my pictures as I’m documenting my weekly hair growth on instagram now. She is a part of the process, and this helped her understand it was going to be ok. The book “Nowhere Hair” was also amazing for us to introduce the subject to her.
7. Rebounder – We bought a rebounder for exercise post chemo. It’s fun, and the bouncing helps engage the lymphatic system to fight off future cancers. Also a good way to transition into more activity after feeling so weakened after chemo. Just 5 minutes is a good start.
8. I saw an acupuncturist during chemo and I do so now, though less frequently. She helped me feel balanced and try some eastern medicine techniques to get me through.
9. Listen to your body. When it’s time to stop and sleep, do it. When you feel good, go for it. 

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Dacy Yee shares nine tips and advice on how to care for yourself and your family during chemotherapy treatment.
Photo source:

“October Hues” by Damian Gadal is licensed under CC BY 2.0 / Text added to original

Personal photo courtesy of Dacy Yee by Alice Hu Photography

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What Normal Feels Like: Lisa Howard

LisaHoward

When we are diagnosed with breast cancer, we can never imagine life feeling normal again. The scars, the fatigue, the never-ending rotation of waiting rooms and appointments and any little ache or pain might trigger fears of a recurrence. We wonder if there will ever be a time when we don’t worry about cancer. Lisa Howard was diagnosed with stage III HER-2+ breast cancer four years ago and with a newly married daughter and a brand new grand baby, Lisa says her crazy, beautiful life finally feels normal again.

NAME

Lisa Howard

Read Lisa’s 2013 submission here

GIVE US AN UPDATE ON YOUR HEALTH

All is well. As in really, really good. Several weeks ago, for the first time since my diagnosis, I left my oncologist’s office without a single worry. In the past, even with good reports, I was always reminded of how bad my diagnosis had been and what I should be doing to prevent a recurrence. The ride home was always “heavy”.

This time, thankfully, things were much different. It was as if my medical team was finally breathing a sigh of relief. I felt as if I had been given the equivalent of a healthy high five. I was told to keep doin’ what I’m doin’. In my opinion, it can’t get much better than that!

WHAT IS YOUR BEST PRESCRIPTION?

Last year I was taking Femara and experiencing fairly intense joint pain. I knew working out and clean eating helped but there were times the pain was almost unbearable. I was losing range of motion in my arms, even the arm that was unaffected by cancer. Rather than accept this as my new reality, I went in search of a remedy.

Through somewhat of a fluke, I discovered a blood test (done by my chiropractor) that detects food sensitivities. When these foods are consumed, they create a chronic condition in my body that results in excessive inflammation.

My results showed I had issues with bananas, coffee, cranberries, sesame seeds and dairy. Each and every one of these items with the exception of dairy, were part of my daily diet. When I eliminated them, my joint pain disappeared!

The sensitivities were rated on a scale of 1 to 6. Most of mine fell within the 3-4 range. This means I can have them in limited quantities so I can still enjoy my morning cup of coffee most days. Having to eliminate coffee forever would have hurt my feelings just a teeny tiny bit.

If anyone is interested, the test measured the IgG antibody using Enzyme Linked Immunosorbent Assay, or ELISA. This is a non-immune-mediated reaction, known as food intolerance as opposed to food allergies which involve the body’s immune system and results in anaphylaxis. I’m sure any allergist can order the test. I know the results were crucial to increasing my quality of life. I’m happy to answer any questions you may have.

Tell us something AWESOME, something completely out of the box.

You asked for something awesome and completely out of the box. Something that will show there is life after cancer. While my answer may not qualify as such to some, it is the most awesome of awesome to me.

Life finally feels normal.

This past July my daughter moved home a few weeks before her wedding on July 12th. Two days after the wedding, she packed up and moved to Vancouver to start grad school and a new life with her new husband. Merely two weeks after that, my son and his wife welcomed a sweet little boy into the world. My first grandchild. A new life to celebrate. So much living in such a short amount of time.

My days are filled with working, traveling, socializing, planning… truly living. Until recently, I felt cancer defined my future. That I would always be labelled the girl who “fought the fight.” Now, I am finally beginning to see cancer as part of my past. As something that forever changed me but as something I survived.

And life…my crazy, beautiful, never-know-what-it-will-bring life… it goes on.

Lisa-Howard-Aug-2013

Photo Source:

“Intense Woman Working” by jseliger2 is licensed under CC BY 2.0 / Text added to original
Personal photo courtesy of Lisa Howard

Finding Her “Me” Moments: Cathy Westrich

Cathy Westrich shares her best exercise advice and the importance of "me" moments for breast cancer survivors.

Cathy Westrich is mom to four children and lives in Ohio. She was diagnosed with breast cancer at age 42. This year marks her 18th year as living disease free. I think about Cathy’s cancer experience often when I’m feeling scared or unsure about my future. I think it’s important for me and to others to read that there are women who have lived years beyond their diagnosis.

NAME

Cathy Westrich

Read Cathy’s 2013 submission here.

GIVE US AN UPDATE ON YOUR HEALTH

No changes – healthy and happy!

WHAT IS YOUR BEST PRESCRIPTION?

I have become obsessed with Reformer Pilates and try to go 5 times a week. Being 60, I have found that core strength training makes me feel energized and strong and it’s so good for posture!

Tell us something AWESOME, something completely out of the box.

I have been retired for two years now. I LOVE that I have had the opportunity to hold two grandchildren, attend all four of my children’s weddings and get to know their amazing partners and rediscover my own partner. I am so grateful for what I refer to as my “me” moments, watching hummingbirds, collecting seeds from my garden flowers, drinking coffee on the front porch working a sudoku puzzle.

There is so very much life after cancer, just you wait and see!

Cathy Westrich shares her best exercise advice and the importance of "me" moments for breast cancer survivors.

Photo Source:
By dsc03272 is licensed under CC BY 2.0 / Text added to original
Personal photo courtesy of Cathy Westrich

 

Cancer Does Not Care About Age: Kristy Davis

Breast Cancer Survivor, Kristy Davis, shares her best advice for young women.

Kristy Davis is 35 years old from Schaumburg, IL. One month after her 30th birthday, she was diagnosed with ER/PR+ Her-2+ breast cancer. Kristy tested negative for the BRCA1 and BRCA2 gene mutations and is currently awaiting the results of additional gene testing considering her strong family history of the disease.

Married for eight years, Kristy is a mom to a one year old son and is currently expecting a daughter in late October 2014.

NAME

Kristy Davis

HOW LONG HAS IT BEEN SINCE YOU WERE DIAGNOSED?

I am currently five years cancer free!

HOW DID YOU FIND OUT?

My husband was being silly and felt a lump. I went to the doctor and she sent me for a mammogram which was followed by an ultrasound. The ultrasound showed a spot in my right breast that resembled cancer which was followed by a biopsy that confirmed the diagnosis.

TELL US YOUR REACTION.

Initially, I cried when I was told at the ultrasound that it looked like cancer, but when I received the biopsy results I just asked what was next. I didn’t think much about my future. That was a time that I lived in the present and just focused on getting rid of the cancer and moving on with my life.

WHAT WAS YOUR TREATMENT PLAN?

My cancer was fed by Estrogen, Progesterone, and a protein called Her2-neu. I had a bilateral mastectomy (the left side was prophylactic), followed by chemotherapy which was paired with a drug called Herceptin (that targets the Her2-neu), followed by radiation, and then a drug called Tamoxifen (keeps the cancer from feeding off of my hormones).

I was supposed to be on the Tamoxifen for 5 years, but took a break to start a family.

HOW HAS TREATMENT AFFECTED YOUR WELL-BEING, IF AT ALL?

Treatment only temporarily affected my well-being. Any issues I had cleared up shortly after treatment was completed. I am very lucky and grateful for that.

HAS HAVING BREAST CANCER INSPIRED YOU TO DO SOMETHING GREATER WITH YOUR LIFE?

Breast cancer has inspired me to live my life. I enjoy life more and stress less. I am accomplishing what I have always wanted to accomplish. I fulfilled my dream of being a mother. I’m not focusing on what the future could bring. I am making my future what I want it to be.

SHARE YOUR BIGGEST STRUGGLES AND HOW DO YOU MANAGE THOSE?

My biggest struggle was accepting the fact that treatment could have made me infertile. I was really upset at first, but then told myself that if I didn’t go through treatment then I may not live to have children. I convinced myself that I needed to do everything I could do to ensure that I would be here for my future children and if having those future children is not possible then I would just cross that bridge when I came to it. I convinced myself to live in the moment.

FROM YOUR EXPERIENCE, WHAT ADVICE DO YOU HAVE FOR OTHERS WHO HAVE BEEN DIAGNOSED?

The best tip I could give to any woman out there is to do your self exams and (if you are old enough) get your mammograms on time. Breast cancer can grow fast. I went to the doctor in March 2009 and had a breast exam done. August 2009 we found a 1.8 cm tumor in my breast. It grew that much in less than 6 months.

Cancer doesn’t care about your age, gender, race, religion, family history, etc. It does not discriminate. It can choose anyone. You want to catch it early if it happens to happen to you.

Breast Cancer Survivor, Kristy Davis, shares her best advice for young women.

Photo Source
“Silky Robe” by wsilver is licensed under CC BY 2.0 / Text added to original
Personal photo courtesy of Kristy Davis