Seven Years by Mary Beth

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

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.

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.

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.

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

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

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

Cancer Doesn’t Come to the Party Alone (by Judy)

A Facebook friend of mine who has lupus once told me

Lupus doesn’t come to the party alone

and went on to list other ailments she has had since she was diagnosed with lupus. I feel very much the same way about my cancer.

As most readers of my blog know, I was first diagnosed with Stage 4 Inflammatory Breast Cancer (IBC) in January 2008 after a month of tests. IBC is a rare and aggressive form of breast cancer. One explanation of IBC can be found at the Mayo Clinic website.

Anyways, my cancer certainly hasn’t come to the party alone. Throughout my treatment, I’ve been diagnosed with ailments that I either wouldn’t have without the cancer (or treatment) or that would have taken longer for me to get. Since I was diagnosed with IBC, I’ve also been diagnosed with arthritis, diabetes, and a pulmonary embolism (a blood clot in my lungs). It’s possible that I would have eventually had arthritis and diabetes because they run in my family. However, I suspect they would have come later in life without my cancer and the grueling treatment regimens I’ve endured. The pulmonary embolism is a direct result of having cancer, as my oncologist told me. I take medication for each of these conditions.

In addition, my teeth and eyesight have worsened because of the cancer and treatment for it. Currently, I also have dermatitis (a rash on my face and other places on my body that looks like pimples) and hand-foot syndrome.

Don’t get me wrong. I’m not trying to complain; I’m simply stating facts. Is this cancer different than cancer(s) that other people have? Well, yes. Each cancer patient, even each metastatic IBC patient, responds differently to cancer treatments. My treatment is individualized to me and my cancer and other conditions. I meet with my oncologist once every four to six weeks to see how things are going — what side effects am I having, how does my bloodwork look, etc. She is wonderful at asking questions specific to me, and I feel comfortable asking her about anything.

One place you can go to find out information about cancer treatment is a website called Is My Cancer Different? Is My Cancer Different includes sections on Individualized Cancer Treatment, Frequently Asked Questions, and Expert Insights. Each section includes subsections full of information from patients, medical professionals, and scientists that can help someone who is starting out on their cancer journey. It can even answer questions — or provide reassurance — to those of us who are (or feel like) old-timers in the cancer community.

I am so glad that my oncologist subscribes to the notion that cancer affects everyone differently. As regular readers know, I’m currently on a chemo regimen that works well for me. However, as my oncologist told me, some women can’t tolerate it. She also told me that some women have been on this combination of drugs for three years or more. That would be a good thing, of course, because I’ll be on this regimen until it stops working for me. At that time, she’ll find another chemo regimen for me. She’s told me that a number of women can live for “many years” with my condition. I haven’t yet – nor may I ever – ask for her definition of “many years.” You know, I have that nine (almost ten) year old son I’d like to raise to adulthood, and of course, I’d love to be here on this earth beyond that time. I just don’t know what the future holds.

No, my cancer – unfortunately – didn’t come to the party alone . . .

even though there was no invite.
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Cross-posted to Just Enjoy Him.

can’t sleep (by Judy)

I can’t sleep tonight. Thoughts swirl around my mind — the cancer, the hope, the fear, our lives. Our lives are not composed solely of cancer, but cancer can’t seem to NOT permeate nearly every aspect of our existence. I am a person. I used to be “just” a mom, wife, librarian — someone who could exist amongst the world of the healthy people, living with certain words describing me and not being Someone Who Has Cancer . . . Stage IV Cancer, at that.

*sigh* I hate cancer. I hate the way it robs of of things in our lives even when we’re living and I hate how it robs people of their very lives, the way it will most likely rob me of my life before I’m ready to leave this earth.

So I can’t sleep. Despite my best efforts: despite Angry Birds and Facebook and turning the light off to go to sleep, and trying to relax, my mind won’t stop tonight. It’s full of thoughts of friends who are sick and friends who have died and my good friend’s mother who died and my father who died many years ago and so many people who have died of this terrible disease, cancer, in its many many forms.

I think and I sigh. I know both oncologists that I’ve seen have told me that many woman live many years with the kind of cancer that I have, I know this . . . . but I didn’t have the courage either time to ask what “many years” meant because I have a suspicion that “many years” to me may be a totally different thing to the oncologists. So I live in some kind of suspension, thinking, hoping I can beat the odds AGAIN and live a long time. Yet at the same time I project into the future and always think of how old Energy Boy will be when it’s time to quit the treatments, when it’s time to call in hospice, when it’s time.

When it’s time.

I don’t know if it will ever be enough time, not with Absent Minded Professor and especially not with EB, for raising a child is really a life-long job that moms never quit doing. That they never want to quit doing. It’s the best thing I’ve done, being a mother. He’s the best part of my life, he and AMP. I don’t want to quit at some time just because cancer has worn down my body and made it time to quit.
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I think people expect certain things of me. I think people expect me to be “up” because most of the time the world sees my smile and not my tears. I think people want me to be a fighter when sometimes I just wish I could call on someone else to fight for me, just to give me some rest. I think people want me to be able to do all the things I used to do when the reality is that my energy level and stamina are so much worse than they were Before Cancer. I may now have hair and I may “look good,” but the fact is that I still have cancer and even if I don’t go into the Chemo Room for infusions, I’m still on chemotherapy; it just comes in pill form.

I think people think I’m brave when I feel anything but. I think people people think it’s wonderful that I’m working full-time when all I can think about work is how much it saps my energy and how I have nothing left for my home life . . . and how sad that makes me. And I think there are some people (not many, but some) who wish I would just stop talking, stop writing, stop sharing my life so openly.

But that’s not me.

This — the sharing, the late-night posting, the telling of fears and vulnerabilities — that’s me, and I’m not ashamed that’s me; in fact, I’m proud that’s me. I’m proud that I can work things out online, that I can think out loud, live out loud, and put it down on the computer screen while I’m thinking things, that I can figure things out as I’m typing the very words that you now see.

That’s me.

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The house would be quiet if it weren’t for AMP snoring like a freight train. The air just went on again so I hear the whir of the air coming through the vents, keeping us cool when it’s hot outside. I wish I could take a short walk or wake someone up to get together and chat over coffee (decafe for me, at this hour) or tea and just talk about life and be witnesses to each others’ lives. I write this down so any readers can witness my life; the thing is, I don’t know about most of the witnesses. I just keep writing and assuming people are, if not drawn in, at least interested in the mundane and not-so-mundane parts of my life.

I am tired. I am tired most of the time, but if I stay up late like this, of course I’ll be extra-tired the next day. However, when the old beast Insomnia comes and keeps me up, it makes this sleep stuff difficult.

I am living. I am writing. I am sharing. I am here.

I am here.

I am still here.

And maybe that’s what matters most.

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Cross-posted to Just Enjoy Him.

children with cancer (by Judy)

(First, I need to say that I’m not talking about Energy Boy; I don’t want to upset any of our loved ones.)
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When it is dark enough, you can see the stars.
~ Ralph Waldo Emerson

It’s hard being a mom with cancer, particularly an aggressive cancer or a cancer at an advanced stage. We worry about our children — how is this experience affecting them? Will it change them? Will they never be quite as innocent as other kids who don’t face such troubles in their families?

And then there are the really big worries: Will I be here to raise him? Will he ever remember me when I wasn’t sick? Will he get as much mommy time as he needs before this disease takes me?

It’s a heavy burden, but I know there are heavier ones. My cancer is the worst thing that’s happened to me, but I know without a doubt that if EB had cancer, that would be even worse. We don’t want our children to feel pain. I wouldn’t want him to have to go through chemo or radiation or surgery, as I have. Yet, some children DO go through some/all of those, and perhaps even more painful stuff. We’re blessed that EB is very healthy right now and I pray that he stays that way. I don’t know what it’s like to be a mother whose child has cancer, but I can imagine somewhat.

Yesterday I received a very nice email from Ryan Stephens, the Marketing Coordinator of the MD Anderson Proton Therapy Center. I’m going to quote some of his email here.

Hi Judy,

Because of the way you’re able to bring Energy Boy and Absent Minded Professor to life on your blog, while also detailing your own cancer journey, I thought you would be a great advocate in helping us share the story of Matthew Rager – a 9-year old glioma brain tumor survivor – in hopes that other parents will feel empowered in the fight against childhood cancer.

I work at the MD Anderson Proton Therapy Center where Matthew received his proton radiation treatment and his mother Denise wanted to share their story, of struggle, advocacy and courage to offer support and hope to other families facing cancer. Their story, told by Denise through a video essay will premiere April 16th in New Orleans at the annual Mom 2.0 Summit (on Twitter @Mom2Summit or #Mom2Summit). The video will be available on YouTube for everyone to view and share immediately after the premiere. I’ve included you in an exclusive group of people who get to see the video a day early in case you want to share it on your blog after the premiere tomorrow.

I hope you’ll consider sharing their story and video on your blog (or via Twitter) after the premiere — as you will no doubt influence the lives of those who now or might some day need to make a decision for themselves or someone they love.

Please let me know if you have any questions or would like more information on proton therapy. In the meantime, more information can be found here: http://mdanderson.org/protonforkids

Thank you for your time!

Ryan Stephens

I watched the video, twice, and cried like a baby both times. I related to the mom, for even if my son hasn’t been through what hers has, I think on some level, many of us moms have secret worries and fears about “what if . . . . ” happens to my child. I wanted to embrace this boy, this family, and then cheer them for what they had been through, what they had endured.

I love this video. It’s a very touching story of a boy’s journey through cancer. And not just his journey, but his family’s journey, and what they’ve done to help others afterward. Mostly, it’s a video about hope, and hope is nothing to sneeze at, my friends.

Please watch Matthew’s story. It will make you want to hold your child(ren) a bit tighter today.

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Cross-posted to Just Enjoy Him.

mixed. but good. i think. (by Laurie)

And I’m not talking about the weather, which while it has been mixed, has been pretty consistently bad for the last twenty four hours. We had a big dump of snow (the photo above was taken from my front door), followed by freezing rain, which will be followed by ordinary rain.

Good thing I just bought rain boots.

My GP called me last week to let me know the results of my endoscopy (I won’t get in to see the gastroenterologist until March 21st). All my results were negative – no celiac, no bacterial infection, no cancer. It’s all good.

Then I talked to my oncologist on Friday. We discussed my scope results and my digestive symptoms (diarrhea, heartburn, abdominal pain). He expressed surprised that I was still feeling lousy on Friday after a Tuesday treatment. I told him that my recovery time had gone from four to six days and that last round, I’d felt sick for a week (this ended up being the case this time, too).

Then my oncologist said, “It’s time to take a break.”

I was floored.

I had been hoping to hear these words for months (years even) but when I finally did, I definitely had a mixed reaction. I’m being taken off the chemotherapy not because I’ve been in remission for a while (although I have) but because the chemo has started to take too big a toll on my body.

As Dr. G. said, “You can’t stay on vinorelbine forever.”

I’m going to continue with the Herceptin but take a break from the chemo for at least three months. Herceptin is also known to induce flu-like symptoms but I don’t think it has the lasting toxicity of chemotherapy drugs. I’m likely to bounce back more quickly after treatments.

So we’ll see what happens. There are no guarantees of anything and no promises. Every change involves risk.

But the next few months will be devoted to healing.

Cross-posted from Not Just About Cancer.