Seven Years by Mary Beth

April 29, 2013

Shortly after midnight on Saturday my daughter and her friend gave me this beautiful card case to hold my business cards.

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Sunday was my seven year anniversary as a Breast Cancer Survivor. On Friday, I ordered a cake for myself to celebrate this day.  I don’t really drink, I don’t do drugs and I have never smoked and I still got cancer… so yes I eat sugar.

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I asked my closest friend in California, (who was literally the first person to hear the news as the Doctor called me at work) to come over and celebrate with me.

The day started out a little later than I had planned, I was running late for church and the chapel that I attend is very small and difficult to sneak in late. I decided to go to the church that we belonged to when we first moved here (and during my treatment) as their mass starts 15 minutes later. This parish had been talking and planning and raising money to build a new church when we became members. I do believe things happen for a reason and as I sat in the church I became very reflective on the past 7 years. I sat in the old church and prayed to heal and survive when I was sick. Now 7 years later I sat in this new church and so thankful that I am still here.
Cancer changed my life forever, not all bad, but changed nonetheless. I am healed on the outside, but sometimes the emotional side still creeps up on me. A few months back I had a “touch-up” procedure done. Before I left work for the appointment I looked at myself in the mirror and thought outwardly, most people that I meet now, have no idea that I am a cancer survivor. My hair has grown in and they can’t tell that it is much thinner than before. My eyebrows and my eyelashes have grown back and my eyelashes hold mascara again. My scars are not visible when I am dressed. People cannot see the effects of the aromatase inhibitors. But as I lay on the table with the greatest leopard hospital gown on… the tears started streaming down my face. I was back 7 years ago as they wheeled me into the operating room to remove a part of my body. I have learned we must allow ourselves to honor these moments as part of the healing process too.

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Today the tears streamed down my face again, so many emotions. Happiness that I am still here, gratefulness for all of the people that supported, prayed and helped me. Sadness for many of the people that I met because of the cancer that are not here anymore. I wrote and delivered a note to another close friend at that time, who had helped me with the kids. Our lives have now taken us in different directions. I sent a thank you text to Lou for supporting me during my treatment. We were close to divorcing in 2006 and then I was diagnosed. We decided to stay together. We tried for another 5 years, but it just was not meant to be.
After honoring those few moments of tears and emotions I was off to enjoy my day. I walked my favorite island and visited my friend who is still recovering from a freak illness. He congratulated me and then asked “did you think you would be sitting here 7 years later?” “Honestly, I was not sure, but my Doctors were.” was my response. They told me it would be 12-18 months of hell and then I would have a greater risk driving on the freeways.

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I treated myself to one of my favorite childhood candies while relaxing for a pedicure.

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My friend and her daughter came over and we celebrated our friendship… and the girls ate CAKE!

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The only part missing in the day was seeing my Dante. This was his weekend with his Dad and his future Step-Mother. Other than that…
I am a survivor.
I am alive.
I have so many amazing people in my life that care about me.
It was a great day.

cross-posted at marybethvolpini

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Stream of Consciousness (by Judy)

November 4, 2011

I was just looking at my notes from the Metastatic Breast Cancer Network (MBCN) Conference that I attended last weekend in Baltimore, MD. I was hoping to find something that would lend itself to a coherent, theme-specific post, but instead I find little bits of information, some of them like golden nuggets that I can stash away until MBCN has the conference and power point slides online in about a month.

I wil share some of these nuggets, though, these little bits of information that, for whatever reason, struck me at the time as important enough to write down.

So here goes a disjointed, fragmented post . . . even though it’s all about metastatic breast cancer (MBC). That’s the thread that holds it all together.

One of the speakers talked a little bit about how the Network first was formed because two women, both with MBC, felt isolated and alone in support groups of people with early stage breast cancer. Things like going pink all of October or celebrating the end of treatment “is not possible with metastatic disease.” I know what she means, what the founders meant. I chave totally different conversations with those with early stage breast cancer (BC) than I have with those who have MBC. The ones with MBC seem to intuitively know what I’m going through, what I’m feeling and even thinking. They understand the very real fear of dying, of leaving this earth before I’m ready. They understand the worry I have for my child, my husband, my little family. They know that talking about death doesn’t mean that I’m obsessed with death or that I think I’m going to die soon. They understand that it’s a deep need to understand what will eventually happen to me with this metastatic disease. They understand all of these things because they live with these things themselves.

Approximately 30% of people diagnosed with early stage breast cancer will at some time develop metastatic breast cancer, cancer that has spread to organs other than the breast. Breast cancer, if confined to the breast, doesn’t kill. MBC, however, kills. And there’s very little research done on MBC.

One of the reasons that we also may become, in Whymommy’s words, cancer rebels and pink protesters, is that we can’t be happy and pink during October. We can’t join the throngs of “survivors” if we’re not going to survive this disease. We know we’re different, that we’re what they fear the most. How can we join in when we’re the black sheep of the breast cancer movement, the bad girls of breast cancer?

We can’t. We stand out. People get quiet when we tell them that we have MBC. They don’t, understandably, know what to say, although I think an “I’m sorry” or “I’m sorry to hear that” is always something you can say to people who are struggling not just with breast cancer but with so many other things that happen to people.

We are the 30%. I am part of the 10%, the percentage that was diagnosed with Stage 4 disease from the outset. I guess that makes me one of the REALLY bad girls of breast cancer. And it makes me unpopular with some people, with people who only want to see the happy stuff, with people who are uncomfortable with my diagnosis, with people who just can’t face the fact that I won’t be around someday, that barring a miracle or sudden death from something else, this cancer will take me in a horrible way.

Trust me, it’s not something I like to think about, but I have to. I have to try to prepare my loved ones that someday I won’t be here, I may be in hospice care, they may watch me die. Believe me, I don’t like that image any more than anyone else does, but the difference is that I can’t pretend that it doesn’t exist, I can’t say, “Oh, you’ll beat it,” because MBC is an equal opportunity killer — it takes fighters, optimists, supplement-takers, vegetarians, the religious, etc., just as much as it takes everyone else.

I will die from this. My husband, bless his heart, still says, “I hope not,” even when I try to talk to him about things that are important to me, that I think he’ll need to know about if it gets to the place where he’ll have to raise our son by himself.

*sigh* It’s a hard life. Even so, I love my life and I have an amazing God and I hope and pray for treatments to extend my life for a very long time.

That, and a good medical team, keep me alive for now . . . .
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Cross-posted to Just Enjoy Him.


For Those Living with Metastatic Breast Cancer (by Judy)

November 2, 2011

Researchers are surveying people living with metastatic breast cancer about how they make treatment decisions. If this applies to you, please consider taking the survey. Their deadline for the survey is November 11. Thanks so much.

SURVEY
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Cross-posted to Just Enjoy Him.


Some Things

April 12, 2011

A year ago when I was rediagnosed with breast cancer I was diagnosed with stage IV Metastatic breast cancer. which basically means my cancer had spread outside my chest area to other parts of my body. I kept this pretty private do to the girls and tried to make it as easy on them as possible only making some details known to them, to protect them in a way.

Lately my scans have been good I have had some set backs but I believed I was on the up swing. I had another round of scans last week and my scans reviled a shadow that my doctor wanted to check out a little closer. So I had a brain scan on Friday morning, by two o’clock my doctor called me with the results. The cancer has spread to my brain in one spot on the right side in the back of my head. I also had questionable spots throughout my brain.

So this has been really hard to soak in. It’s not an easy thing to process. Yes I have cancer, in my brain what will happen to me? So I start radiation to my head tomorrow, and they will treat me for two weeks everyday. Then we will work on the spot of cancer if it needs to be treated. they will stop my chemo until then, they don’t like to mix the two together.

So that is what we are facing right now, it’s hard and scary and I hate sharing it all with you, but you are all a big part of me and my recovery and my blog has pulled me through some really tough times. So I thought I could share this with all of you.

Thank you so much for all of your prayers and support

Sarah

Cross posted on Spruce Hill


I need to believe there is good in the world

February 23, 2011

What? Not what you’d expect from a woman trained as an astrophysicist? Not what you’d expect from a mother obsessed with keeping her small children safe, even as she encourages them to explore their world?

Cancer changes you. Cancer changes me.

I never really considered myself a fighter (except for that one well-timed WHACK over my friend Chaka’s head when we were 10 and he wouldn’t share a game in math class), but when I went back and read some old posts at New Year’s, the determined, war-like language jumped out at me over and over again:

We *fight* cancer. I am a *survivor*. We survivors *battle* side effects and *fight for our lives.*

Cancer has become a great evil in the world, against which some of us must ceaselessly struggle, and yet it is the most frightening evil of all to me, for it is not an enemy I can see. It is not something I can fight with corporally, for it is inside my own body.

The cancer is in my own body, and it grows and spreads and seeks purchase inside my body without my even knowing.

Having fought it back on the right (breast) and left (breast and then lymph nodes) flanks, it has now surged to the center, taking over seven lymph nodes in the soft tissue surrounding my lungs and close to my heart, and I don’t know how to even imagine killing it this time.

So I trust my doctors, and enter a research trial, and pray without ceasing. I pray using the same heart that is threatened by the nearby nodes, and I breathe, trying not to wake the cancerous nodes beside.

I no longer know how to trust my body, since it has betrayed me.

So I have to trust that there is good in the world, enough good out there to lift my spirits and give me strength to fight this cancer, and to spill out and help others besides, as I rage that I am not strong enough to help as I would want to, to take care of my friends and loved ones, to rush to canape’s side as she waits to hear the news of her father today. to sit with Stephanie and her sick child at urgent care. to cheer Jack on in a crowded ice arena. to care for Colleen’s little one as she goes to PT. to write checks to help the women who are not as lucky as I, with all the resources I have to fight this cancer.

Cancer changes you. But cancer cannot stop love or the power to act for the good of others.

To help provide lymphedema sleeves like mine to women who can’t afford them, please leave a comment at Kristen’s where she is donating $1 per comment, up to $500, or donate directly to Crickett’s Answer to Cancer, who is now partnering with LympheDIVAs to meet this need, simply because I asked them to, and it looked like a good way to honor Crickett and Rachel, and all the pathfinders who have fought before.

Originally posted on Toddler Planet, January 11, 2011


B.Y.O.S.

June 5, 2010

edited to add: I first learned about this spray in the hospital after giving birth to Olivia. New Mamas: this is the spray for you after you give birth. It’s Heaven in a bottle!

I was packing at the cancer center today…packing a spray can full of “Dermoplast” that is. Here’s a great little secret for those who are dealing with cancer or anything else that requires lots of blood draws and/or shots – bring your own numbing spray to apply before the procedures.

As you know, my blood draws from my ankles and feet are tricky and numbing the skin before hand makes it so much more tolerable. Moms, you might think of getting a can to bring to your child’s next shots too.

So, recapping: BYOS…Bring your own spray!


The importance of being earnest about skin checks

May 22, 2010

Please welcome Julie Pippert, a friend and fellow member of the American Cancer Society’s Blogging Advisory Council.

It was just this little spot. An annoying little spot on my nose. It would start to go away and then would flare up, get a sort of crusty scab, then fade down to something like a scar. When it first arrived, I thought it was acne. It was on my nose, after all, and it flared up during PMS. But it never went away, it just kept cycling up and down as my body cycled up and down.

The thing is, I knew it was something. My mother had skin cancer years ago when I was in college. She went in for a day patient surgery to have it removed, and it all began with this annoying spot on her nose. In my early twenties about twenty years ago I had this mole that was exhibiting those “red flag” symptoms and the dermatologist excised the area and sent samples for biopsy. Nothing, thankfully, but the doctor warned me I was the poster child for skin cancer, and the pre-cancerous spot on my arm was a big screaming warning.

I heeded it, and became diligent about limiting sun exposure and wearing sun block. I always wore hats out, too. As a result, my skin looks pretty good for my age, but…it was not enough and too little, too late.

That spot on my nose was why my big Choose You goal was skin care and skin checks. So yesterday I went to the dermatologist for a long overdue skin check, and she found several areas of skin cancer. The spot on the nose, she treated right away. The rest are a little more complicated and I go back very soon for treatment of those. The bad news? Skin cancer. The good news? I got a check and it is all caught early. The shock? The area of largest concern was not even a spot I worried about. I thought it was just a no big deal freckle.

As soon as I got home I notified my Choose You group for support. I knew they’d accept my whining and give me the love I craved. The second thing I did was dive into the Google, as much as I knew that was a bad idea. However, I went to the American Cancer Society’s skin cancer facts site and got really good, non-scary information.

So how did I get skin cancer and what does it mean?

I am fair complected, got sunburns as a child, have a family history of skin cancer, and I am in the sun every day (with sun block on). My skin has little melatonin, and responds to UV by freckling. I also have moles, some of which have been atypical.

The important thing is that I got that check. So we caught this early and can treat it with one of the simple treatments, including cryosurgery ( liquid nitrogen freezing off of the area) and excision or Mohs.

The worrisome spot on my nose is very early stages and was treated with cryosurgery right in the office. I’ll return for a biopsy of the other areas. From that point, we’ll know better what the situation is and the best method of treatment. Right now, my doctor suspect, based on visual, that it’s all local. That’s good news. Basal cell and squamous cell carcinoma have a very high cure rate.

What made me suspicious?

I knew my mother’s story of her skin cancer, so when the spot on my nose didn’t heal, I knew I had a problem. I delayed longer than I should have — a warning sign is a sore that doesn’t heal in two weeks, so I should have gotten check a couple of months ago — but luckily I did go get checked.

Skin cancer is actually the most common cancer, and over 2 million Americans will get the same diagnosis as me this year.

However, the more serious areas did not even arouse my suspicions and I’m still not sure why they concerned my doctor. At best, I can think the only symptom might be a slight spread of brown pigmentation.

The point there is: GO GET CHECKED. You can’t diagnose yourself, only a doctor is trained to know for sure.

If you are at risk, you should get checked early and regularly.

Could I have prevented this?

Skin cancer is fairly preventable, but I had so many risk factors I’m not going to play the “if only I had” blame game. Nobody was taking skin cancer or sun block seriously in the 70s nor even in the 80s (aka the Baby oil and Crisco days). Because of my fair skin, and my tendency to burn, I was never a sun goddess. As a child, my mother even made me wear a t-shirt over my swim suit for protection. I don’t think we even knew about sunblock when I was a child. So even though I never stayed in the sun much, wore hats, and added in sunblock as soon as I was aware, I still got the cancer.

I have made lots of changes for my kids, even though, courtesy of their dark-skinned father, they have better melatonin and pigment than I do.

I follow the skin care/cancer prevention advice from ACS:

Can skin cancer be prevented? The best ways to lower the risk of non-melanoma skin cancer are to avoid intense sunlight for long periods of time and to practice sun safety. You can continue to exercise and enjoy the outdoors while practicing sun safety at the same time. Here are some ways you can do this:

  • Avoid the sun between 10 a.m. and 4 p.m.
  • Seek shade: Look for shade, especially in the middle of the day when the sun’s rays are strongest. Practice the shadow rule and teach it to children. If your shadow is shorter than you, the sun’s rays are at their strongest.
  • Slip on a shirt: Cover up with protective clothing to guard as much skin as possible when you are out in the sun. Choose comfortable clothes made of tightly woven fabrics that you cannot see through when held up to a light.
  • Slop on sunscreen: Use sunscreen and lip balm with a sun protection factor (SPF) of 15 or higher. Apply a generous amount of sunscreen (about a palmful) and reapply after swimming, toweling dry, or perspiring. Use sunscreen even on hazy or overcast days.
  • Slap on a hat: Cover your head with a wide-brimmed hat, shading your face, ears, and neck. If you choose a baseball cap, remember to protect your ears and neck with sunscreen.
  • Wrap on sunglasses: Wear sunglasses with 99% to 100% UV absorption to provide optimal protection for the eyes and the surrounding skin.
  • Follow these practices to protect your skin even on cloudy or overcast days. UV rays travel through clouds.
  • Avoid other sources of UV light. Tanning beds and sun lamps are dangerous because they can damage your skin.

Thanks for listening, friends. You can read more of Julie’s journey at Julie Pippert: Using My Words and the Choose You Blog for the American Cancer Society, where this post was originally posted. I’m also hoping she’ll come back here and share more with our Mothers With Cancer community.