PR for MWC

January 16, 2009

I was approached in October by Worlds Health News Today. They wanted to interview me and my daughter regarding our involvement with Kids Konnected. While filming that piece I spoke about this site, the blogosphere and the support it can provide. Nancy – the interviewer was interested and she later contacted me about doing a piece on blogging and health.

We tried to involve more of our ”Mothers”, but the WHNT is based in Irvine, CA and the next closest member is about 4 or 5 hours away. The piece aired today on cable but you can go here

I was hoping “WhyMommy” would have received more credit being the brainchild behind this site, but it ended up on the editing floor.

Overall, I am happy with the piece (Mario was pleased with his airtime) and I hope the other contributors are also.

As I mentioned in the piece – whether it is 2:00 am and you can’t sleep, 10 in the morning when the kids are in school, check in whenever you need us…

We are MotherswithCancer…

Cross-posted at marybethvolpini

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Giving Back….

October 6, 2008

Saturday night my daughter and I attended the 10th Annual Founders Gala for Kids Konnected. It was held at the Marconi Automotive Museum in Tustin, CA.

I wanted to give back to this organization that helped us so much throughout my cancer experience and continues to help us emotionally move forward. I created this original collage that I felt was significant to Kids Konnected and the children they assist.

The director of the organization used the piece in the live auction and asked if I would be willing to go up prior and say a few words about our experience with Kids Konnected and my collage. My daughter and I went up before the audience and this is a summary of what I said… “Two years ago today I was in surgery undergoing a bilateral mastectomy with immediate reconstruction, before the surgery I underwent 4 months of chemotherapy and during that time is when we found Kids Konnected. Kids Konnected has helped us emotionally move through this horrible disease. Even as I got well my daughter wanted to stay involved, she became a teen leader and continues to help other children navigate through this maze. This painting was created to express how even though a child may lose a parent to cancer that parent will always stay in their heart… their Mom or Dad rises up to heaven and becomes the angel watching over them. Even though my prognosis is good, I know that if I hear those dreadful words again (you have cancer), our Kids Konnected family will be there to help my children.”

The bidding started at $300.00 (the cost to send a kid to camp), the bidding worked it’s way up to $1000.00. The gentleman bidding then added, “I pledge $1000.00 annually”. He said he would honor his pledge and we could rebid the painting. They started the bidding again and another gentleman matched the $1000.00 annually. I am not sure if it was the collage, my speech or the visual of my daughter and I standing there together and people really seeing what their money can do…. but the details really do not matter. Six kids will get to go to camp each year, every year and that is what truly matters.

cross posted at marybethvolpini

 

 

 

 


Community

August 31, 2008

We’ve been camping again this weekend.  We arrived yesterday afternoon.  Somehow between setting up and bedtime the ties under our pop-up trailer came undone.  Weather they weren’t secure when Jeremy set it up or one of the kiddos pulled on them.  Anyway….during the night my poor sleeping Elijah (19 months) rolled into the crack and fell right through to the ground.  I knew instantly what had happened when I heard him cry.  I started yelling “he fell out of the camper Jeremy!”  Jeremy half awake ran outside and got him.  He was so upset.  So was his mama.  We both cried.  We got him calmed down and he snuggled up next to me on the safe side the rest of the night. 

How horrible to be sleeping, warm and snug, then all of a sudden “bam,”  you wake up only to hit the hard rocky ground in the middle of the night.  What a rude awakening. 

This was a little how cancer was for me.  I was pretty safe and happy in my warm environment till one day “bam,” you have cancer.  I was just going about my business and then I rolled and fell plummeting into a downward spiral.  I woke dazed and confused.

When Elijah fell, we immediately examined him to make sure he was alright.  We turned the awful lights on and were immediately blinded.  He was crying his pitiful little cry.  Jeremy went to fill his bottle.  Jeremy wanted to turn the lights out but I wasn’t convinsed he was OK. 

I pulled him close to me and kissed, and kissed and kissed him.  I kept running my hand over his head to feel if he had any bumps that might be growing.  Even though I was terribly uncomfortable sleeping on my side with my post-mastectomy body I wouldn’t move because I didn’t want to let go of him.  I wanted him to know I was there.  We didn’t move the rest of the night.

When I took my own cancer fall I am happy to say I had a great community of support to help me.  I’m sure there were times when those I’m close to wanted so bad to hug me and hold me close and erase this misserable stuff that was happening to me.  When my world came crashing down I was in a daze and needed support.

If you are experiencing your own cancer fall right now I want to tell you right now is not the time to be shy.  Hopefully you have a community of support through your family, church or network of friends.  But if you don’t, I would encourage you to find a community that will travel this journey with you.  A church is a great place to start. 

My church family has called, written cards and brought meals.  Many people have offered help with childcare.  They also prayed over me and for me throughout this journey.  Any church you go to should respond in this way.  Call the pastor and explain the situation if you aren’t connected anywhere.  Even if you think religion is hog wash….you still need support. 

Cancer is a horrible diagnosis.  The initial shock is something that cannot really be explained if you haven’t experienced it.  But having a supportive network around you makes a world of difference.  It makes traveling this journey a little less painful.

By the way.  Elijah is just fine.  So am I.  You will be too.


Kill it with laughter

August 14, 2008

Laugh, and the world laughs with you.
Cry, and you find yourself all alone in your room.

What? Is that only at my house?

Humor is the lubricant of life. It eases our way through tight situations, keeps the friction from getting so hot that it causes permanent damage and generally allows for smoother interaction between all the parts that make up our hectic lives.

Humor, it can be said, is a miracle fix-all.

Toward that end, Young Survival Coalition and Stand Up To Cancer (SU2C) are combining their significant resources and those of ABC, NBC and CBS to air a fund raiser on Friday, September 5, 2008. Money will go toward all the cutting edge research we read about in the news. Research the government doesn’t want to fund. Research that will save lives.

We are so close to a cure for cancer. So close. Close enough to a cure that our children may not ever have to worry about dying from over-producing, vagrant cells that overtake healthy cells and kill them. Close enough that many cancers are already considered “chronic diseases” instead of terminal.

Close enough that even the little bit of money that I am able to spare can help the cause.

Won’t you please help, too?

Mark your calendars. Program your TiVo or DVR. 8:00 p.m., Friday, September 5, 2008. Help laugh cancer into submission!!!

Cross posted at I Can’t Complain Any More Than Usual


Colorectal Cancer

July 21, 2008

I know I haven’t been what you would call forthcoming with posting on this site up to date and I feel I must admit I have been finding it rather difficult to know what to post about here. Apart from sharing my diagnosis and what that entailed, I have reached a brick wall. At first I wondered whether it was because I felt intimidated by the quality of the writing here, which would be perfectly understandable, and I guess it was a bit of that but I talked myself through that and came out the other side. There was something more to it. I think that because there are many stories here of such bravery and strength, stories of pain and sadness I wondered how I could possibly have anything to add. I mean, I had told my story, most of it – up till the time of writing anyway. So what more could I add? I couldn’t write about how it feels to have lost my breast or breasts because I still have mine, is there perhaps a little bit of guilt as I am surrounded by women on this site who have all lost breasts, or breast, or are in the process of losing them. I sit here with two perfectly good breasts, sure they are starting to droop a little as I approach 40, but, nevertheless, I have been blessed with what I guess you would call ‘good’ boobs! I find myself trying to imagine what it would be like to lose them or one of them and I just can’t quite get there, not fully. All I can come up with is me having to have an ileostomy, which although figure changing, and very difficult for many women to get their heads around, it is still not quite the same as losing breasts is it. But, as I write this, I suddenly realize that, no, it is not the same at all, and that is what makes writing about my experiences worth while! I have literally only just worked this out as I type it now! This is not about whether I write well or write often or anything to do with how anyone else writes, it is about me sharing my experiences in order to help other women! The very fact that my cancer is different and stands alone (so far) on this site is the very reason I must write about it and how it feels and what it entails and every detail I can include – because there could be women out there who come to this site wanting support and information on their particular cancer. I know that is what I wanted when I went to sites for information. I will just clarify one thing before I go on, I do believe there is definitely a solidarity with other women who have cancer because of the cancer, not because of where it is and what type it is, nothing can change that and I believe that is how it should be. It is the cancer that is the important issue and where it is should be secondary to that. However, in saying that, I do think that it can be very helpful to be able to read or gain information about your particular type of cancer, simply because you can relate to it more easily. So, having clarified how I feel about that, I can move on without giving the wrong impression. I think it would be wonderful for this site to have contributors who have many different types of cancer. (Obviously I don’t mean that I wish more people had cancer, just that those that already do would come and share their different stories.) The more types of cancer written about, the better, as more women can be supported not only by an entire site of amazing, empowering women with cancer but also women who are dealing with or have dealt with their particular cancer. I think the more we can learn about cancer in general, the better, the more we can learn about emotions and the details of living and dealing with all the different types of cancer, the better. It would result in more tolerance, more understanding, less shame, less inhibitions about the often ‘body changing treatments’ we go through in order to try and stay alive.

So, I guess after thinking all of that through, I should be able to share more, realizing that it doesn’t have to be terribly interesting to all who read it, as long as it contains some information about my cancer whether physical or emotional, then no matter how simple I keep it, it may be of some value to someone- really, if only one person benefits by me discussing my journey with cancer, then it is worth doing, which is the same reason I ended up talking about my journey on what was, a simple scrapbooking blog, now the stats say I have around 2,000 readers a week, 300 odd people per day! That amazes me, but it also tells me that people like the simple truth, I don’t need to be a great writer (thank goodness) just to write about what it is like coping or even and especially, not coping and living and mothering with cancer.

Now, although an ileostomy, (that is a bag you wear on your tummy and it catches the poo, nice huh!!) is not the same as losing a breast or breasts, it does come with it’s own unique set of body image issues, management issues, health issues and quite frankly it’s not really something you would ever choose to have unless it were pretty much a life and death situation, or if you had been living with excrutiating pain for a very long time. I can tell you that when I first woke up with one (a bag) I was shocked and horrified. However, I determined that day, that I would get a grip on this and handle it in a positive way. There were a couple of people whom I could talk to about my fears and disappointments and I did as I believe it was a healthy way of dealing with it. It is a very real image change, quite startling in intensity actually. To go from having a young(ish), slim, quite pretty figure, and then to wake up with an ugly brown, large ‘bag’ attached to you that is full of well….shit!…is really difficult. (Not to mention the huge scar from pubic bone to breast bone). It is definitely ugly and not only does it look ugly but what it is there for is ugly too, to catch the ummm..sorry..shit! That’s the plain harsh truth of it. So, I understand completely what it is like to have a body go from one certain look to another that is not at all attractive. Luckily I was able to deal with it. A lot of women can’t. I personally knew one woman that died last year, the entire time she had that ‘bag’ she hated it and she just kind of gave up on life largely, I am sure, because of the bag. She felt embarrassed and ashamed and never learned to accept it, right up until the day she died. Part of what I want to do and this is what I wanted to do on my original blog, is to help take the mystery out of ileostomies, well all kinds of stoma issues actually. I want to acknowledge that yes, it isn’t the nicest thing that could happen to you – but you can learn to deal with it and find ways to make it less intrusive and less embarrassing. I really do believe that if folks discussed it more openly it would not be conceived as something so abnormal and freaky. I think that more women would be able to get their heads around it and fight to live a reasonably normal life. Anyway this post is so long I must stop, I do have a lot more to say on the subject and I will but it will be in the next post. Okay, thanks for bearing with me, take good care of yourselves and each other.


Ask me no questions, I’ll tell you no lies

July 16, 2008

Today was my seventh 3-month follow-up oncology appointment. For those of you who don’t feel like doing the math this late in the day, that’s 21 months post-treatment. 21 months No Evidence of Disease (NED). 21 months of living life. Of course, there is always bad with the good. It was also 21 months of waiting for that other shoe to drop. 21 months of worry. 21 months of mental Do Before I Die lists and At My Funeral Memorial Service lists.

I did get a clean bill of health today. My blood work was all normal. My lymph nodes were all fine. I have no bone pain, pulmonary issues nor headaches beyond the norm. In short, I rock Survivorship! Knock wood.

This 3-month appointment was different than the others, however. This time, I asked questions. This time I wanted more than a checkup. I wanted information too.

I’ve already shared that I purposely avoided IBC information while I was undergoing treatment and why (read all about it in my memoirs, Why bad Focal Points Happen To Good People) also that I don’t have a great track record with asking my doctor cancer questions. The last time I worked up the gumption to ask a scary question I DID NOT like the answer. Can you say 90% recurrence risk?

So I started small, with the nurse who took my blood pressure when I asked her to make copies of my pathology reports. I’ve somehow lost them over the last 2 years. (Besides, amazingly enough, the details were fading and I was no longer sure I had my facts straight.) Wow. She came right back with them. She didn’t even tell me I would need to pay a small fee for copies like the old office. So far so good.

When Dr. Villa came in we hugged and I showed her the new pictures of the boys. Then I told her all about this site and how excited I am about it. She asked for flyers or cards – which I have not made yet. My bad. Then we got down to business. Thanks to posting here I’ve developed the courage to ask the questions I’ve been wanting to ask for a long time.

I asked her about the original statistics she had given me about recurrence. She had told me most recurrence occurs at 2 and 5 years. And I’m coming up on the 2 year mark. She said that she had forgotten that I was triple negative when she had given me those numbers. The figures for triple negative breast cancer are more like 12 to 18 months. But I am beyond that. And that is very, very good. Perhaps, she says, you’ve fallen into that niche of ones who sneak through.

More good news. This was working out better than I’d hoped. So I asked about the infamous Cancer 5 Year Mark. “Does that hold true for Inflammatory Breast Cancer also?”

“I’m going to say ‘yes’,” she said. Yes? Yes! Yowza! Something to work towards!

And I asked about preventive clinical trials that I may qualify for. There are none at the moment. It’s nice to know she’s keeping her eyes open for me. I’ve wondered about that for a while now. She did mention two new bits of research that she wants to keep in mind for me.

We will check my Vitamin D level with my next blood work. Studies have shown that breast cancer patients who are deficient in Vitamin D have almost double the chance of a recurrence or spread over 10 years time and are 73% (!) more likely to die. Holy cow!!! It’s not about drinking milk. It’s about getting 15 minutes in the sunshine without sunscreen daily. Do it! 73% is too huge a risk not to.

She’s also closely watching Avastin for it’s benefits in preventing recurrence.

I had read about both when they came out so it’s nice to know I’m keeping up well enough on my own.

I want to send a big Thank You to every one of the women here at Mothers With Cancer. The sisterhood that is forming before my eyes is already having its effects. Empowerment. Strength. And this is only the beginning.

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Toward that end, I would like to direct you all to the Discuss tab at the top of the page. There is a link to a discussion board there. It is just beginning to take a foothold. Only through participation will it grow strong and become a community, a resource, a source of knowledge. Please take the time to register and introduce yourself on the Introduction topic.

If you have any burning questions or topics of interest feel free to start a new topic.

Stella