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The Words…

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Last ride of the summer with the boys & my pups…

I’m going to try something new here.  Rather than focus on a premeditated topic, I am just going to write.  Crazy, huh?

You could say writing was an activity I once loved, but this wouldn’t be altogether accurate.  Sure, as a child/teenager/young adult I enjoyed it on a level that seemed foreign to some of my peers.  Was I passionate about it?  Of course.  But it was more than this.  Writing was almost akin to eating or taking a breath for me.  It was something I had to do to survive.

I know I sound like an idiot.  Obviously you can’t live without eating (though God knows I’ve pushed these limits in the past) or taking a breath.  Not writing can’t possibly be as perilous for one’s body as trying to survive without food or oxygen, of course.  But it was my soul that would cling feverishly to this outlet.

What I’m trying to tell you is that writing was something I needed to do.  It was strangely painful to not write.  It was as if the words needed a place to go and if I didn’t let them out, they would build up inside me until I felt emotional pain.  Physical distress.

Writing was my coping mechanism.  My escape.  My salvation.

I needed to write the words that flowed from my mind, my heart, through my once capable young hands.  And, equally, the words needed me to set them free.

breast cancer thirties 30s 30's young Salvador Dali tree museum tampa florida wish young stage 3c IIIc ribbons

The Dali Wish Tree: “This wish tree, streaming with ribbons, carries the wishes of our visitors and community. We invite you to contribute a wish to the tree, and to be part of the cultural tradition that extends back to Hindu and Scottish rites. In all its forms, the wish tree invites and holds our fond hopes.” [Photographed during our lovely visit to The Dali Museum in Florida (with & thanks to jme & bryan), just before we added our wishes, our words, to the tree’s hope-laden branches.]

But somewhere along the way, this relationship changed.  Life changed.  My desire/need (or whatever it was?) to write is not like this anymore {or that’s what I like to tell myself, at least}.  At some point, writing became an obligation, a job, a necessity of another sort.  And the words that once needed to break free from my mind, my soul, were trapped inside.  Bottled up.  Locked away.  Dusty and hidden, but not quite forgotten.

I hadn’t thought about this in ages.  Until just a few minutes ago, that is, when I found myself once again thinking about stopping here to read your kind words and to tackle one of the tens/hundreds of cancer-y topics I have swirling around in my brain, topics that I feel should be addressed in these “pages” because of their importance.

And, once again, I thought about closing my blog tab in an attempt to forget about writing until the next time I’d find myself in front of the computer screen.   Yes, the next time, when I could once again procrastinate and put off tackling the weighty topics I know should be addressed, topics that I will likely continue to attempt to deal with despite the gnawing pain that emanates from the words trapped inside my soul, the words that long to be set free.

On the Radio

W and Lion

Whoa, oh, oh, oh, on the radio.  Sorry, I can’t get Donna Summer’s lyrics out of my head!

Good morning all…

I wanted to let you know that I will be on the radio tonight.

I almost didn’t mention it because I’m a bit rusty on the public speaking front.  Okay, a lot rusty.  But I reconsidered because I have a vested interest in the segment’s subject matter.  I have been asked to discuss breast cancer, Breast Cancer Awareness Month, pinkwashing, and events like “no bra days” on “The Afternoon Fix” radio show with Chuck Pullen on 1230AM WJOB in Chicago.

Just in case you are interested in tuning in, you can listen live on the station’s web site:

http://www.wjob1230.com/

at 6 p.m. Eastern

(As a head’s up, their stream is .pls format (Shoutcast).  You can listen with iTunes.  Or use Windows Media Player, but you will need to install this plugin ahead of time.  Or you can use WinAmp.)

A representative from Breast Cancer Action will follow me to discuss the “Think Before You Pink” Campaign.

I think it will be worth a listen…

If I don’t screw it up, that is!  But you’ve all given me the confidence to continue to stand up for what I / we believe in, so I’ll give it my best shot [she says with a nervous laugh]!

p.s. I know the photo of W running from the cardboard lion has nothing to do with being on the radio, but I thought you’d appreciate a laugh.  We saw the lion and couldn’t resist!

Palliative Care at 30-Something : What Does it Mean? (Part II)

This is a long overdue post, so I will have to backdate it…  I’ve actually been back two times since!

Photo Credit: pcdsys.com

Photo Credit: pcdsys.com

See Part I here.

Part II:  [April 13, 2013]

First Visit:

So I had my first visit with Palliative Care a few days ago. This Palliative Care department has been touted as a great group. They are located in the Cancer Center at the largest and most lauded hospital in our region, so I had high hopes.  I was both nervous and excited about the appointment because I had also heard the director of the department speak at a breast cancer conference a year or so ago.  It was a refreshing talk and I figured that if everyone shared his attitude, this was going to be an informative appointment at the very least.  And, at most, it could change my life in some way.

It got off to a slow start.  The specialist took a good look at my medical record — every last bit of it is available through the hospital’s online database.  Then he asked a series of questions to ascertain what my life quality is like these days.  We discussed the ‘why’ behind my oncologist’s referral.  He did a physical exam and then talked with me about a treatment plan.

Before you read on, I will let you in a little secret.  I used to be what my past doctors referred to as “medication non-compliant.”  I did not (do not) like to take drugs — especially painkillers — unless I REALLY needed to.  And I would just go off pills just because I didn’t want to take them anymore [despite those yellow and black warning labels that said scary things like, “Do not discontinue abruptly,” or “Do not skip a dose of this medication.  Serious complications could occur.”]  I may have pretended to be a good patient, but I was not.

This newsflash may be a little/lot surprising when you look at the list of medications I am currently — and dutifully — taking.  Since the two hospitals and the independent cancer center I go to all share the same electronic charting database (e-Record), a complete list of all of my meds is available in my virtual chart.  And every time I sit down with any of my doctors, that list of meds is reviewed and I am asked if I am taking everything as prescribed and a box is ticked to indicate my answer for each. There is nowhere to hide.  And they print this list for me every time I walk out the door, so it’s easy for me to just whip it out to count the number of prescriptions I’m on.

The back corner of my kitchen counter...

The back corner of my kitchen counter…

21.  I just counted 21 different prescriptions.  That is a lot of pill bottles for someone who doesn’t like to take drugs. And a lot of pill bottles to open a few times per day. But life has changed in every way in the past three years.  Taking pills I don’t want to take is just par for the course. But I still haven’t given in to the painkillers entirely.  I say that I take them as prescribed.  But I don’t.  And I’m sure my oncologist has figured that out.  If I took the percocet as prescribed, the 180 pills she writes for each month would only be enough to get me through 2 weeks.  But somehow I always manage to stretch them all the way to our next visit… I’m sure she’s noticed that.

So when I decided that I would be completely honest and tell these doctors what I actually take, I figured it would be a painful appointment. But it wasn’t. Dr. H thought that continuing with the Percocet (Oxycodone) I finally surrendered to taking two summers ago was a good plan.  But he said that it would be important for me to begin taking the dose actually prescribed. He also said that rather than waiting until the last possible moment to take a dose, I should be on a regular schedule of every 4-6 hours.  The premise is that keeping your pain under control is a much healthier way to live than chasing the pain and poorly managing it.  It is apparently much easier to keep pain under control than it is to get it under control. But I knew all this from the countless times it had been explained to me in appointments, after surgeries, in the hospitals, etc.  This was just the first time I was really prepared to listen.

Dr. H also asked that we increase my Neurontin (Gabapentin) prescription from 300 mg to 600 mg per dose. 3 times per day and at bedtime.  This would help with my nerve pain and issues (left over from Taxol chemotherapy and a left-sided radical mastectomy — I did have both breasts removed, but the mastectomy on the right side was far less invasive).  It might also help with the hot flashes and energy-sucking night sweats I have been experiencing since an emergency hysterectomy / salpingo-oopherectomy last year at the age of 35. Dr. H said that we would do this for a few weeks until I had adjusted and then we could increase.  He also said that when I returned, we would discuss the addition of methadone or morphine to the schedule.

Whoa.  What was that?  Methadone or morphine?  Really?  From what I’ve heard of this group, it’s difficult to get drugs out of them, so I have to say that hearing this was a bit of a shocker.  Dr. H stepped out to get the Director of the group.  I figured Dr. Q would set the record straight and take the morphine and methadone off the table.  I mean, I am 30-something years old, I shouldn’t be preparing for a life on these drugs, right?

Photo Credit: Stinkin-Thinkin.com

Photo Credit: Stinkin-Thinkin.com

Then my doctor’s boss came in, reviewed my chart, and gave his take on what the treatment plan would be.  It matched up identically.  Even the morphine/methadone part.  They seem to feel it is time for this and that there is no point in suffering needlessly anymore.  That was a sobering thing to hear.  I will have to do some research for next time because all I know of methadone has to do with recovering heroin addicts lining up to get their methadone so they can cope with the drug withdrawal. I’m hoping they have something a little different in mind for me?!

In the meantime, I am going to work on getting on the prescribed schedule and on being a decent patient!  Something tells me that I may have to add a column with my name to the sticker chart I keep to help the boys behave.  Maybe if I take all my meds as prescribed I can get a Hot Wheels car, too!

An Update on Frank and Nancy

***

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Do you remember Man of Science, Man of Faith, a story about my friends Frank and Nancy?

Frank was diagnosed with a recurrence of his cancer last month.  He was given 3 months to live.

It hasn’t been a month yet.

Three weeks ago, Frank and Nancy were still kind of hopeful.  Even I am not quite sure what I mean by this.  Maybe just that they believed Frank had some good time left and that he would surpass the three month expiration date he’d been given?

Exactly three weeks ago (a couple of days after learning about Frank’s updated diagnosis), I stood in my kitchen chopping vegetables and browning chicken for homemade chicken soup.  I was making it for Frank.   When the people I care about are sick and I feel helpless, I am compelled to make chicken soup and bring food.  I certainly felt helpless when I heard about Frank’s stomach metastasis, so out came the big soup pot.

A few hours later, when the soup was finished and packaged in big, blue glass bowls, I walked next door to Frank and Nancy’s house.  I dragged my husband along so he could deliver the large bag of organic fruits and vegetables I had picked up at the grocery store for Frank and Nancy.

I knew that Nancy would understand my response to her husband’s illness.  I knew this because she has showed up on my doorstep with food a number of times since my diagnosis.

Nancy accepted the big red bag full of produce.  But she did not want me to leave the soup.  She said that three families from her church had dropped off three different kinds of soup that weekend.

I insisted that Nancy keep the soup.  I said that they didn’t need to eat it, but that I had made it just for them, so they could freeze it or toss it, but I wanted them to have it.  I needed them to accept it.  I’m usually not this forceful, so I surprised myself with my insistence.  But they had to take it, for my sake, because I had to help in some small way.

A couple of hours later, Nancy called me to tell me that she hadn’t wanted to say anything, but Frank was only eating soft foods.  She said that he had tried the other soups but couldn’t eat them (or didn’t want to).  She told me that he tried mine and enjoyed it, including the soft vegetables and mushrooms it contained.  She said that he had even managed to finish a bowl.  She was so happy that she had to call.  And I was so touched that I felt a hard lump develop in my throat.

So two weeks ago when Nancy said that the soup was gone and she asked me to make more, I was delighted.  I was just getting over pneumonia and was so tired that it took me most of the day (with rests in between!), but I was honored that Nancy had asked.

This time I decided to roast a whole chicken.  I stood in the kitchen dressing the chicken, thinking about poor Frank and Nancy.  As I placed rosemary sprigs and a freshly cut lemon into the chicken, I recalled that day two summers ago.  Nancy had arranged a surprise 50th birthday party for Frank.  As I rubbed the herbed butter I had just made onto the chicken and under it’s breast skin, I remember how excited Nancy was.  She wanted everything to be perfect.

Nancy even went so far as to plan the party in a large and lovely space in the new town hall building — in another town a half hour away.  She didn’t want him to suspect.  She told Frank that the party he was going to was a graduation party for a girl they knew.

I was now chopping vegetables, placing them in the roasting pan beneath the chicken, and dousing them with olive oil and salt and pepper.

When Frank walked into the party room, we were all there.  His closest family and friends.  Nancy had even flown Frank’s brother and sister in from out of state.  So when he walked in and saw the fake graduation girl and noticed his own friends and family behind her, I think he was just as shocked as when everyone shouted “Surprise!”

I opened the oven and slid the roasting pan in.  It was time to start working on the soup now.

Frank was clearly surprised.  So surprised and touched that he wept.  Frank is a very tall man, so to see this tall man with a commanding presence stop in his tracks and begin crying was a moving sight.

I filled a large pot with water, chicken stock and salt and pepper, and I began washing and chopping more vegetables.

It was a great day filled with smiling and laughter.  Genuine happiness.  Nancy had done a beautiful thing for Frank.  Though she didn’t have a lot of money to spend, she made the party seem like she had a large budget to work with.  She worked hard on this day and she asked people to pitch in where they could.  She knew it was an important day.

It would come to be more important than she ever could have realized.

I gently dropped vegetables into the pot and added a touch of olive oil and seasoning to the stock.  Soon I would take the golden brown chicken from the oven and add juicy chunks of chicken and tender, roasted vegetables to the stockpot.  And then I would walk next door to Frank and Nancy’s house with my pot and with the hope that Frank would be able to eat my humble offering.

That was two weeks ago.

One week ago, Nancy said that Frank was now only able to drink the broth.

And things got progressively worse this week.  I remember hearing the distress in Nancy’s voice whenever we talked.  She was tired from worry and from caring for Frank around the clock.

And when Frank and Nancy’s son came over in need of a ride to school on a couple of the mornings (because he had missed the bus so he could help his mom take care of his dad), he was noticeably quiet.

Nancy was having trouble keeping Frank hydrated.  She was using a syringe to wet his lips and mouth.  I took Pedialyte popsicles over so she could melt them down and replenish some of his electrolytes.  But we knew they wouldn’t make that much of a difference.

Despite her vigilance, Frank had also developed a bedsore.  Nancy said that the nurses had’t been caring for it, so I took a special cream over that would help to soothe it and form a barrier.  But I was afraid that it would get infected and I knew that it must be causing pain.

Early Thursday morning, the phone rang when it was still dark outside.  It was Nancy.  She said that Frank was unresponsive and that he had wet himself.  I tried to conceal how upset I was to hear this, but it was no use.  I talked to Nancy for a little while and told her I would bring some adult diapers over.  They had given me these when I was hospitalized for my hysterectomy last year and had been hemorrhaging and pads were not enough.  I was sad when I realized that I had no idea back then that they would be going to Frank.

Frank came around again that morning and was able to talk to Nancy and his kids, but I knew that these things were signs that he would be gone soon.  My guess was that day.  Frank and Nancy’s son came over for a ride to school after he helped his mom clean and diaper his dad.  He was visibly shaken.  It was heartbreaking.  He is a good kid and a good son.  I was upset that he had to experience this.  His prom was the next night and instead of worrying about what kind of corsage to get his date like his friends, he was worrying about losing his father to cancer.

The day went on and night came.  At 2 a.m., the phone rang.  I knew it was Nancy.  I picked up the phone and heard a small voice on the other end.  It was Nancy telling me that Frank had just passed.  She sounded both upset and relieved.  His pain had ended and his suffering was over.

Cancer claimed another life.

Frank was just 51.  He is survived by his loving wife, son, daughter, brand new (5-month-old) granddaughter, and a large group of friends and family who loved him.

And Tonight We Danced…

***

breast cancer thirties 30s 30's cancerinmythirties.wordpress.com dancing kids twins

Tonight we danced…
You and you and I…
***
We danced in the living room, between chairs
and beneath shiny blue paper stars and an off-white sky
***
Some days I wonder when it will all end
Some nights I lie awake knowing it can’t last
And fearing the day when you will no longer have a Mom
***
But for now, for tonight,
You are mine
And I am yours
***
For tonight your giggles will echo as you step on my toes
And we will dance and twirl ’til our heart’s content
You and you and I…

Guest Post by Susan Vento, Wife of the Late Bruce Vento

Hello Loyal Readers,

I hope you will all take a moment to read the story below — and then go one step further and sign the petition that follows.

When Susan Vento, wife of the late Bruce Vento, a former U.S. House Representative, contacted me to ask for help with this important campaign, I had to take a few minutes out of my day to sign the petition and post her story.

I hope you will also take the time to read her moving story and sign the petition.

Thank you all — I am so fortunate to be a part of such a wonderful & supportive blogging community.

———

My name is Susan Vento, and I am writing to you about a cause that is very close to my heart. On October 10th 2000 my husband, Bruce Vento, passed away. He was serving as a congressman for the state of Minnesota when he was diagnosed with pleural mesothelioma, a very rare cancer that is caused by asbestos exposure and kills 90-95% of its victims. Please read my post below to learn more about my personal story.

I Support Victims’ Rights: My Family’s Fight Against Cancer & Unfair Legislation

It was on a Saturday––January 29th, 2000 to be exact––that mesothelioma entered our lives. “Asbestos,” they told us, the name of the killer that would eventually take my husband’s life nine months later.

Like any story, I would like to start at the beginning because only then can you understand the meaning of the ending. My husband, Bruce, grew up on St. Paul’s East Side, the second of eight children in a second generation Italian-German family. He attended the University of Wisconsin-River Falls, working construction to put himself through college. He then went on to teach junior-high science in the Minneapolis Public School system and later was elected to the Minnesota House of Representatives in 1970, representing East Side St. Paul families. In 1976, he was elected to the U.S. House of Representatives from Minnesota’s Fourth Congressional District, where he served his constituents in the Fourth District up until his death, just barely 60.

He and I first met while Bruce was lobbying in Washington D.C. in 1980. Four years later, I started doing volunteer work in support of his re-election campaigns. Like Bruce, I was an educator, and I believed in his impact. He supported working men and women, our public schools, and those who are poor and homeless, those who do not typically have a voice in the political process. Little did I know that our love story would start in those campaign rooms, working together for a future we both believed in.

Our first date wasn’t until mid-April of 1995, where he took me out to a comedy club. I was 40 at the time, and hadn’t been dating much because I was more focused on work than anything personal in my life. It sparked the start of my life’s great love, one that I thought would last a lifetime.

In early January of 2000, Bruce left on a Congressional trip to Europe. Each night he called to check in, he kept talking about a shortness of breath and lower back pain. The morning after he returned to Washington, D.C., he went to the House physician, who immediately had him go to the hospital nearby.  They drew a significant amount of fluid from Bruce’s lung for testing.  The following afternoon, he received the call: he had lung cancer. I met him at the airport here in the Twin Cities that night, and we spent the weekend having the conversations you have when you’ve received news like this.  Bruce and I had his sons and their spouses over to share the news with them, and then we went to tell his parents––a most difficult conversation.

The following week, we went to the Mayo Clinic in Rochester, MN. After testing, Bruce’s doctor shared with us that he had mesothelioma. It was caused by asbestos exposure, which happened during Bruce’s construction work back in college. We had never heard of this disease let alone knew how to spell it. While the doctors took Bruce for additional tests, I spent a couple of hours in the hospital library, desperately searching for any kind of information I could find on this vicious cancer. Little was available at the time, so I came up with less information than I had hoped.

It was on Valentines Day that the surgeons removed Bruce’s lung, half of his diaphragm, and lymph nodes. When the toxicology reports came back, we found out that the cancer had spread to his lymph nodes. In April, he began several rounds of chemotherapy, followed by five weeks of radiation. All the while, Bruce continued serving his people from Washington. He never stopped fighting for that cause, that same vision that brought us together.

Since Bruce’s death, I have been a part of several efforts both in Washington as well as here in Minnesota to advocate for patients and their families. Too often, the corporate interests hold court and control the outcomes on much of the legislation being enacted, especially when it comes to issues like asbestos and mesothelioma. The opportunity to share Bruce’s story has been both healing and empowering. So many only know the word “mesothelioma” from the late-night cable advertisements and have not yet experienced it in their own lives.

I’ve met so many patients and families and have learned so much from their experiences. The “small world” connections have been stunning––Bruce’s nurse during his radiation was diagnosed with mesothelioma after his death and later died. My former teaching partner’s father died of mesothelioma, as did a former staff member from my elementary school.  The candidate who challenged Bruce in his last three, successful re-election bids for the U.S. House was diagnosed following Bruce’s death and died a few months after.

I’m doing this to honor Bruce’s legacy as well as to do what I can to help other patients and families protect their legal and constitutional rights. The Asbestos Cancer Victims’ Rights Campaign (ACVRC) is committed to providing a voice for patients and their families as Congress debates and makes decisions regarding legislation that would seriously erode our rights. While awareness and information surrounding mesothelioma has improved in the last thirteen years, we need to continue raising our voices. Starting with signing our petition, I encourage you to join our effort in whatever way you can.  With your help, we can take a stand. Together, we can work towards building a better tomorrow and truly make a lasting difference.

___________

There is something YOU can do to help. Recently, asbestos companies have been using their political influence to introduce a new bill. It is called the “Furthering Asbestos Claim Transparency Act” (FACT Act), and it will delay, and in some cases, deny justice and badly needed compensation to people suffering from asbestos-related diseases. I am a spokesperson for the Asbestos Cancer Victims’ Rights Campaign (www.cancervictimsrights.org). The ACVRC is a national campaign dedicated to protecting the rights of cancer victims and their families.  I hope that you will join our fight to defeat this unfair legislation. Here are a couple of simple steps you can take to make a difference:

1.    Sign the petition to stop legislation that threatens cancer victims!

Go to www.CancerVictimsRights.org/take-action/sign-the-petition/ and follow the instructions to sign the petition at the bottom of the page.

2.    Spread the word!

Share your thoughts on our cause and the protection of cancer victims’ rights with your blog audience. Place a link to our petition on your blog to allow your readers to sign and showcase their public support – every signature matters!

Thank you so much! Together we can truly make a difference!

Man of Science, Man of Faith

cancerinmythirties.wordpress.com breast cancer thirties 30s 30's faith science church cat scan belief death

If you were a Lost fan and saw every episode (as I did), you might recall an episode titled “Man of Science, Man of Faith,” (S2, E1).

It was the first episode of season 2 and the episode where Jack, a surgeon, meets his future wife.  She is brought into the E.R. after a devastating car accident that leaves her paralyzed.  Jack plans to operate but tells her that the possibility of regaining function is almost nonexistent.  Jack’s father, a senior surgeon, witnesses this exchange and chastises his son for squelching his patient’s hope.  Jack barks that her spine is crushed and that any hope he’d be giving her would be false hope.  He performs the surgery to the best of his ability, but she is so damaged that he believes she is still paralyzed and that he was unable to fix her.  When he goes back to apologize and tell her she will never have feeling below her waist, she begins wiggling her toes.  Jack, who was previously only a man of science, realizes that science and faith merged to create a miracle.

My friend Nancy has known about my cancer since the beginning.  She watched me barely make it through harsh chemos.  She visited when I was giving myself daily injections of Neupogen as my white blood cell counts plummeted.  She came to say goodbye on the eves of major surgeries.  She brought dinners over to feed my children when I had I.V. bags full of fluid running into the Powerport in my chest and was vomiting so much that I could barely hold my head up.

She watched me spiral downward into a deep well of cancer.  And then she watched me slowly claw my way up to the surface again.

And somewhere in the midst of this, she came to my door with both fear and hope in her eyes.  She told me that her husband, Frank, had something show up on his CAT scan.

I knew that Frank’s hadn’t been feeling well.  I knew that he didn’t look well.  And when I last saw him, the yellow tint in his eyes did not go unnoticed.

She said that he was scheduled for surgery, but that God was good and that he would be fine.

As you may have guessed, Nancy is very religious and is outwardly so.  She has no qualms about sharing her beliefs.

Nor does she have any trouble with telling others to have hope and faith.  She has done this with me many times since my diagnosis.  She has even gone so far as to tell me in a roundabout way that when I am not doing well, it is because I am not trusting in God and not being faithful enough.

It is always a difficult thing for me to hear, especially during the times when I have felt my worst.  I’d be lying if I said the idea that I am responsible for the cancer for any reason is a tough pill to swallow.

But I listen and nod my head because I know Nancy is not saying these things to hurt my feelings.  I know she says them because her faith is so strong that she can’t see these situations from any other angle.

Frank’s surgery revealed a small tumor.  It was malignant.  They also found a small amount of cancer in one lymph node.  The good news was that the surgeon managed to get clean margins.

I was noticeably concerned, but Nancy reminded me that God is good and that the cancer was small and her husband would be fine.

Frank is a doctor and a man of the cloth.  Frank is both a man of science and a man of faith.  Usually.

When Frank started chemo, Nancy did her best to make healthy foods that Frank could tolerate.  She took care of him and they prayed together regularly.  They both had faith that everything would be fine.

Frank had a really difficult time with chemo and eventually decided that he’d had enough because it was making him so sick.  They repeated his scans and everything looked good.  So they both said “God is good” and made the decision to stop the chemo.  Frank was so sick from the chemo that he and Nancy thought it wasn’t worth continuing, especially when his scans were good and he had God protecting him.

I was reeling over this decision.  I insisted that Frank should continue to pray, but that he should also consider finishing the chemo.  I repeated that he would be horribly sick during chemo, but that he would feel better when it ended.  I said that it would be worth it in the end because it would give him the best shot at life.  I pleaded with them then — and many times since.

But they insisted that they were going to let God take care of it.  He didn’t need the harsh chemo.  He just needed to be faithful.

So time passed.  His scans were still good.  I insisted that he go back and finish, though.  But my friends told me that it wasn’t worth the side effects and that God was healing him.

And then he didn’t feel well.  He was having trouble eating.  He didn’t look good.  He was losing weight.

A few weeks later, Nancy said Frank had collapsed and they were going to the hospital for dehydration.  It was the second time in a month.

I suggested that she look into home I.V. hydration so he could avoid these hospital stays.  And I also pleaded with her to reconsider the chemo decision.  She said that it wasn’t open for discussion.  Frank did not want to get sicker with chemo and she wasn’t going to push it.  She still insisted that he would be fine.

He had to go back into the hospital last week.  Again for dehydration.  But this time the scan revealed something.  But she didn’t tell me about it.

She called tonight during dinner.  She asked about the times when I had home hydration because the hospital was giving her a hard time.  They told her that he would need to enroll in hospice and sign a DNR before they would start home I.V. hydration and was this what I had to do?

I told her that it wasn’t at all.  I signed a few forms at the Cancer Center and then a few more when the delivery truck and my nurse showed up at the door.  But it wasn’t hospice related.  And there was no DNR to sign.

The conversation haunted me.  Then I learned that Frank was no longer going upstairs.  Nancy was giving him sponge baths in the living room.  And a hospital bed had just been delivered.

I was sick to my stomach because I had been through this with loved ones before and I knew what it meant.

Nancy said that the latest scan revealed that the cancer had metastasized to his stomach.  That he has 3 months to live.  3 months.

They are scared.  And rightfully so.

And my heart aches for them because I love them both and I don’t want this disease to take Nancy’s husband.

I do believe in God and I do believe in the power of prayer.  But I also believe that modern medicine exists for a reason.

I  wish they could have found a way to balance medicine and faith.  I wish he had finished the chemo.  And I’m sure they do, too.

 

Palliative Care at 30-Something. What Does it Mean?

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Palliative Care Integration Model
Image Credit: University of Alabama School of Medicine

If you’re like me (until fairly recently, anyway), when you hear the words “Palliative Care,” you think HOSPICE.

Hospice is a scary word in the cancer world.  At least that’s been my experience.  In Cancerland, nothing comes after hospice.  That’s it.  Game over.

So when you are a 30-something-year-old and you hear your oncologist tell you that she wants you to see a Palliative Care specialist, your heart might skip a beat.  I know mine did.

For me, I think it is because I was there as my grandparents went through cancer and treatments and eventually ended up on their deathbeds.  I was there when hospice began for them.  And the fact that the start of hospice coincided with the start of their palliative care was not lost on me.  So it’s only natural for me to associate one with the other, right?

Things were different years ago.  My grandmother suffered with her shiny bald head marked with surgery scars and radiation tattoos and burns from the treatment for her brain cancer.  She suffered with no relief until her poor shiny, wounded head lost its luster.  She suffered until hospice started.

The hospice folks came into her home, set up a hospital bed in the dining room, and they began her palliative care, finally, with some heavy duty drugs.  But she suffered until that point.  And even afterward because the pain control wasn’t great.  It was almost a relief when she slipped into a coma and finally died because it was so painful to watch her suffer and to hear her moan in her sleep when we knew that all hope was lost.

My grandfather’s scenario was different.  I’ve blocked out the length of time he actually suffered with lung cancer.  I was there, so I should know.  But it is too difficult to remember how long the cancer actually took to kill him.

What was different about his experience?  When he was ready for hospice, they didn’t come to us.  We moved him to a hospice.  This was where his palliative care began.

But it only lasted for a day.  We moved him to the lovely hospice home, they started him on morphine and gave me special swabs to keep his cracked lips moist.  The volunteers were warm and comforting and did their best to keep my grandfather pain free.  He died that night.

So it’s likely that my ideas about palliative care and hospice are rooted in my experiences.  I learned that palliative care was end-of-life care. But this is not true.  At least not anymore. So what is it, exactly?

From the Cancer Center’s brochure:  

Palliative Care is medical care focused on relief of the pain, symptoms and stress of serious illness.  The goal is to help people live comfortably and to provide the best possible quality of life for patients.

Patients struggling with the uncertainty of serious illness need comprehensive care and support.  They need to know they aren’t alone.

What Can You Expect from Palliative Care?

  • Relief from distressing symptoms such as pain, shortness of breath, fatigue, loss of appetite, difficulty sleeping
  • Improved ability to carry on with your life
  • Improved ability to tolerate medical treatment
  • Better understanding of your medical condition and medical choices

***

Doesn’t sound so bad.  Sounds good, actually.  So I’m far less apprehensive (and maybe a little excited?) about my appointment at 8:30 this morning.  And I feel pretty lucky to be going to the Cancer Center at the best hospital in our area to meet with a specialist on their team.  Of course I’d feel luckier to not be 30-something and in need of their services, but I’ll take what I can get at this point.

I will let you know how it goes…  Though Percocet (Oxycodone) has been a faithful friend for a long while now, I’m hoping there might be something that works a little/lot better — and that’s less liver toxic — in my future.

We shall see…  Good night…

Weekly Photo Challenge: Color

cancerinmythirties.wordpress.com breast cancer thirties 30's 30s color weekly photo challenge daily post

I love The Daily Post’s Weekly Photo Challenge theme for this week — Color.

Though you’d never surmise it from my clothing (my wardrobe consists primarily of 3 hues (if you can call them that!) — brown, grey and black)), I love color.

I have a difficult time imagining a world without it.  I have often thought that of all the senses to lose, I would likely miss sight the most.  Of course losing the ability to taste during chemo made me question the theory I developed during my dismal ‘what if’ game.  But, in the end, I reverted to my original thought — that it would be more upsetting to live in a world without color.

Its presence lift our spirits.  Its absence brings us down.  It is powerful and beautiful.

cancerinmythirties.wordpress.com breast cancer thirties 30's 30s color weekly photo challenge daily post
As always, thank you for visiting.

If you would like to participate in this week’s photo challenge, please click on one of the links below:

Weekly Photo Challenge: Color

The Daily Post’s Weekly Photo Challenges

Weekly Photo Challenge: A Day in My Life

Though this wasn’t compiled in time for The Daily Post’s Weekly Photo Challenge last week, I did pull together the images for this purpose, so I will post with this title:

Weekly Photo Challenge: A Day in My Life — School Break

I hope you enjoy the photos.  And I hope those of you with children home on winter break are managing / enjoying the time!

Thanks for visiting, always!

Weekly Photo Challenge: Forward — Boys at the Beach

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cancerinmythirties.wordpress.com breast cancer thirties 30s 30's beach kids forward young

cancerinmythirties.wordpress.com breast cancer thirties 30s 30's beach kids forward young

If you would like to participate in The Daily Post’s Weekly Photo Challenge:

http://dailypost.wordpress.com/2013/02/22/forward/

http://dailypost.wordpress.com/category/photo-challenges/

Thanks for visiting!

Happy Valentine’s Day

cancerinmythirties.wordpress.com valentine's day breast cancer thirties 30's 30s young

I thought I would take a minute to wish you all a very happy Valentine’s Day.

I was unable to eat and drink today because of a test I needed to fast for.  So when H and my sons came to pick me up from the hospital at 4 this afternoon (and I was cleared to eat & drink again), I was both hungry and thrilled.

I had big plans for the evening with my two Valentines (my twin sons).  But I was too tired to follow through.  I could barely keep my head up at the dinner table.  It wasn’t long before I needed to retreat to the coziness of the couch and my thick blanket and loyal dogs.

I thought my boys would be disappointed — they usually are when I need to lie down.  But they amazed me by understanding my exhaustion.  They thanked me for making their special Valentine cards (I stayed up all night last night crafting Valentines for them and for their teachers) and for the little gifts I made for them.

And then they brought me the gift they made for me.  They found an unused box and filled it with 2 new rolls of Scotch tape, a giraffe-shaped soap dispenser, and some special things from around the house (seashells, bits of coral, a photo of a sea turtle).  They then decorated sheets of copier paper and wrote “To Mom” and “Love, Us” on them.  They wrapped the box in their creations and topped it with an old Christmas bow.

They were grinning from ear to ear when they presented me with their box.  They were taking a rare reprieve from bickering with one another, so I knew this was important!

Struggling to keep my eyes open, and soaking wet and shivering from alternating hot flashes and night sweats that are really day sweats (thank you, radical hysterectomy and Tamoxifen!), I thought I was letting my kids down.  But when they presented me with that special box, I knew I was wrong.  They were happy to have me as their valentine, whatever my condition.  And I realized how lucky I was.

Their squabbling soon resumed and we had to get the homework show on the road, but I still felt like a lucky girl.

cancerinmythirties.wordpress.com breast cancer thirties 30's 30s young twins valentine's day flowers

Tonight I realized that I have two very special valentines.

I hope that you, too, have a special person/child/dog/cat/friend/goldfish in your life.  Good night & warmest wishes, dear readers…

Weekly Photo Challenge: Love

Well, I have returned from my first adventure…but things have been far too hectic and I have been far too exhausted (and ill with cellulitis) to write about the experience yet.  But it is a post I am looking forward to sharing!  In the meantime, I thought I would return with a photo challenge post.  Thank you so much for all of the likes and comments on my last post — and for being there to cheer me on…

These may not be the greatest photos, but to me, they are wonderful representations of this week’s photo challenge topic, “love.”

There were many contenders, but I am far too tired to add them all (and I don’t want to bore you!), so here are just a few.  I may come back to add more at a later date…

Thank you for reading!

————————————————————————————————-

It was Christmas and my littlest sister decided that after all of my chemo and surgeries, the best gift she could give me would be a little companion to help me weather the remainder of my cancer treatments.  So she chose this sweet little mini dachshund and presented her to me with a red ribbon around her furry little body.  Ginger has spent many hours snuggling with me and giving me comfort in the two years we have been together.  And she is a wonderful reminder of the special kind of love sisters sometimes share.

Image

———-

Another Christmas photo…  I was sick and so tired.  And my sweet miniature schnauzer, Mattie, snuggled up next to me.  I had so much to do to get ready for a busy day of making our Christmas rounds that day, but I couldn’t resist the opportunity to lay there with my special girl.  And I am so glad that I did because she died suddenly of cancer a couple of months later.   She loved me unconditionally and I miss her as much today as I did when she first died.

cancerinmythirties.wordpress.com breast cancer thirties 30s young dog dogs illness

———-

And my boys…

cancerinmythirties.wordpress.com breast cancer thirties 30s sick dog dogs illness

Weekly Photo Challenge: Love

If you would like to participate in The Daily Post’s Weekly Photo Challenge:

http://dailypost.wordpress.com/category/photo-challenges/

http://dailypost.wordpress.com/2013/01/25/weekly-photo-challenge-love/

 

Weekly Photo Challenge: Illumination

Weekly Photo Challenge: Illumination

If you would like to participate in The Daily Post’s Weekly Photo Challenge:

The Daily Post’s Weekly Photo Challenge

Weekly Photo Challenge: Illumination

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cancerinmythirites.wordpress.com breast cancer young 30s illumination daily photo challenge kids

cancerinmythirites.wordpress.com breast cancer young 30s illumination daily photo challenge kids

cancerinmythirites.wordpress.com breast cancer young 30s illumination daily photo challenge kids

Weekly Photo Challenge: Resolved — In Memory of Julie

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Julie (left) & Me

I missed last week’s photo challenge, but when I saw this week’s topic, I had to pull out my old photo albums.

The photos you see here embody my New Year’s resolution for 2013.  What is it?

***To appreciate that life is sometimes too short — and to fulfill some of my bucket list wishes.***

The photos I’ve chosen are from a defining point in my life.  Why was this little window of time, this blip in my life, so special that I feel the need to highlight it here?

Because the girl in the photos with me is my friend Julie.  She was one of my very best friends growing up.  I loved her like a sister.  We laughed together, cried together and reached many a milestone together.

These photos of Julie and me are from a once-in-a-lifetime trip we took together.  I know, I know, people say “once-in-a-lifetime” but they don’t always know that for sure.  Sometimes they just say this to be dramatic.

But I am saying it because I know it is true.  I know that Julie and I will never take another trip together.  In fact, we will never laugh or cry or meet another milestone together again.  Ever.

Because Julie is dead.  She was killed in a car accident 5 years ago when we were just 31.

It still takes my breath away when I remember that she is really gone, but I often find myself smiling as I think of the time we spent together.

Though Julie’s death was tragic and horribly sad, her life was the opposite.  Julie exuded warmth and beauty.  She was positive and sweet and lived her life to the fullest.  She was courageous and didn’t let anything stand in her way…

…including me.  You see, I didn’t want to go on that trip.  I had never done anything like that before.  I wasn’t adventurous.  I didn’t think I deserved the opportunity to get on a plane.

It was about a month before our high school graduation when Julie proposed the idea.  Her exchange student for our senior year, now like our new sister, would be returning home to Mexico just after graduation.  What if we went to Mexico to stay with her over the summer?

cancerinmythirties.wordpress.com breast cancer thirties 30s young bilateral mastectomy death loss grief

I was not the adventurous type and I opted to stay home and work until we started college in August.  Plus, I needed to be home to help care for my little sisters.  And I had never done anything just for me before.  How could I start with something so drastic?  No, I would not go.

But it wasn’t really up to me.  Julie would not listen to my protests.  She jokingly threatened to unfriend me (we had been very good friends since we were kids) if I didn’t commit to going.  She said she knew what was best for me (and I admit that she often did).  So, on one of the many evenings I spent at her house, she made a final plea.  Again I refused.  We were munching on her delicious homemade chocolate chip cookies when she picked up the phone and called the airline (this was before you could use the internet to book your tickets).  She pretended to be me and booked my tickets while I stood in her kitchen.  Though I halfheartedly protested and though I feigned anger, I was secretly delighted.  I knew I would enjoy this special time with Julie.  And I knew I was going to miss Judy (her exchange student), who was now a dear friend and that this was my chance to see where she lived and to say a real goodbye.

This was going to be my first real adventure, my first and last hurrah before heading off to university (20 minutes away – another story!) in the fall.

So we graduated from high school, Judy left for her home in Mexico, and we embarked on our adventure 8 days later.  Before stepping off the plane in Tucson (and driving the 4 hours across the border to our friend’s house), I had been a shy straight-A student who hung out in the teachers’ lounge after school because I could always relate better to people older than me.  Between sophomore & senior year, I took every single Advanced Placement class (and there were a lot!) our high school had to offer — and aced them all.  I was voted “Class Introvert” and could get A’s on Calculus tests without studying.  I thought A.P. Physics and Chemistry were fun.  I had been babysitting since I was eight and got my first “real” job the moment I was old enough to get a work permit.  I balanced school and mountains of homework with two afterschool/weekend jobs.  I volunteered a ton — you name a volunteer activity and Julie, jme and I signed up for it.  I had a resume filled with achievements.  I had a full scholarship to Cornell University and scholarships to a number of other prominent schools for Engineering or Biochemistry/Pre-Med waiting for me and I had every intention of continuing to be that people-pleasing, old-before-my-time nerdy girl…

I thought that maybe before college I would do something crazy like cut my long hair or start wearing lipstick.  I had no idea how this trip was going to change me.

It was an incredible 3 weeks.  Because Julie and I were staying with Judy and her family, we “lived” in the heart of a non-touristy part of Mexico where I was the only person with blondish hair for many, many miles.  We got a taste of what it was like to grow up there.  What an amazing way to see another culture.  Our many adventures included a 28 hour (total) roundtrip escapade on an old, steamy, smelly, jam-packed bus.  We were headed to see another friend (Juan–also a former exchange student) in Mazatlan.  The bus trip came complete with dirt roads, middle of the night stops by gun-toting “bandits” in the midst of nowhere, and people who were so scary that we slept in shifts because there had been a number of recent American kidnappings on buses just like ours.  As the only Americans who had probably set foot on our bus in a very long time, we figured we were targets, which made it that much more exciting for my friends (and nerve-wracking for straight-laced me).  When we stumbled off the bus, though, I realized that it was all worth it.  The area was the most beautiful place I had ever seen.  The days were amazing — swimming in the ocean, drinking pina coladas in the pool, parasailing and so much more — things I never dreamed I’d be doing.

cancerinmythirties.wordpress.com breast cancer thirties 30s young bilateral mastectomy death loss grief

Julie parasailing in Mazatlan

And the nights were even more incredible.  More things I never dreamed I’d do.  All of a sudden quiet, shy me who hadn’t really dated much was dancing on tables at these gorgeous open air bars, forgetting about all of the responsibilities waiting for me back home, and getting kissed by older guys in their 20s (Mexicans & Americans alike) who could have stepped off movie sets or off the pages of GQ.

On the bus ride back to Judy’s city, I felt like a new person…  All of a sudden I had gone from being a cornerstone on the math team to someone who had 25 year-olds competing to spend a few minutes on the dance floor with her.  It was fascinating and exciting.

Our next stop was a lovely little town on the Gulf with mountains in the background.  Here we had more adventures with sangria, late-night swims, and mechanical bull-riding.  Then Julie’s older brother (who was in a band & lived in San Francisco) asked us to take a couple of days out of our Mexican adventure to come to see him.  Julie hadn’t seen her brother in a while and she had a huge crush on his roommate, so it was a quick yes from her.  All we had to do was drive to San Diego & he’d have tickets waiting for us at the airport.  Along the way we stopped to visit Judy’s cousins in Tecate (right next to the Tecate beer factory) for another wonderful night filled with yummy food & drinks and happy people.  No matter where we went (with the exception of on that bus to/from Mazatlan), I never heard a word of complaint or saw a frown.  Regardless of what everyone did or didn’t have, the people we met/lived with were warm, welcoming, generous, and positive.

Even the drive up to the U.S. was an adventure.  And then we were off to San Francisco, a place I had always wanted to visit.  We didn’t do anything too exciting, but even a trip to the grocery store was fun with Julie.  And, as it happened, the roommate guy she had a crush on actually “liked” me.  Julie was very gracious about it and happily let me have my moment with him.  He was 25 and an engineer on a big naval ship — the U.S.S. Abraham Lincoln.  Though he was quite handsome, he was nerdy like me & we were instantly drawn to each other.  It was odd for me to realize that I had spent my teenage years feeling awkward and burying my nose in books — and all I had to do was take my hair out of my ponytail and throw a pair of jeans on (and talk to people 7 or 8 years older than me!) and voila…  Eric and I stayed up all night every night talking.  And then we all spent the days together seeing the sights.  It was a total departure from the “me” I knew, someone who had only had a few high school boys show any interest in her.  [Eric continued to send letters & call me (and my mother!) for years after this trip.]

cancerinmythirties.wordpress.com breast cancer thirties 30s young bilateral mastectomy death loss grief

Julie in Spain — wasn’t she lovely?
(I didn’t take this photo — I never made it there)

Before I knew it, Julie, Judy & I were flying back down to San Diego and driving back into Mexico…  And shortly afterward, we made the long trek back to Arizona to catch our plane.  Judy’s family had a condo near the airport, so we spent one last night there — the 3 of us girls — laughing, talking & drinking more sangria in the hot tub (I hadn’t even been in a hot tub (or a condo for that matter!) before).  It was a wonderful way to end our trip.

That summer was — and remains — the best of my life.  After that I started college as a new person.  Still the old nerdy straight-A student who loved math on the inside, but with a new look and a newfound confidence on the outside.  I was always so grateful to Julie for that and so many things.

That trip was the last time I saw Judy… Until 5 years ago — for Julie’s funeral.  Julie was killed by a drunk driver in Spain, a country she loved so much.  The special young man she loved survived, but he was seriously injured — and he had lost the love of his life right before his eyes.  I was no stranger to loss or tragedy, but this was beyond anything I could wrap my mind around.  When jme, who had grown up with Julie from the age of 3, phoned to tell me what had happened, it was an absolutely heartbreaking call.  Jme got on a plane to come back home from Seattle.  And Judy flew from Mexico to stay at my house so we could be together to bury our dear friend…

Though her life was short, Julie’s impact was great.  She made everyone feel special and she touched lives here and across the Atlantic in deep and lasting ways.  The world was a far better place because she was in it.

cancerinmythirties.wordpress.com breast cancer thirties 30s young bilateral mastectomy death loss grief

Julie (rt.) and me
Early morning somewhere in Sonora, Mexico

So, this year I resolve to be more like Julie.  I resolve to check some things off my bucket list (and to make a bucket list).  I resolve to just “go for it” more.  I resolve to work on living my life to the fullest (I’m sure it will take me a while to get there, but I vow to work on it).  And I plan to honor her memory by trying to find and nurture the little light that she saw inside of me when we were just girls on the edge of new beginnings.

In Memory of Beautiful Julie – 1976 – 2007

********************

Weekly Photo Challenge: Resolved

If you would like to participate in The Daily Post’s Weekly Photo Challenge:

The Daily Post’s Weekly Photo Challenge

Weekly Photo Challenge: Resolved

The Daily Post: Weekly Photo Challenge: Surprise

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It was April 12, 2012.  It was the anniversary of terrible surprises.

I won’t name them all.  Just a few.

It was the anniversary of the day I was certain that my unborn babies and I would die in the hospital.  It was the day after Easter.  I had been hospitalized with preeclampsia since the week before when I had gone to my check-up and was told that I needed an emergency induction.  I was sent next door to the “best” hospital in our region.  The hospital with the Level III NICU.  The hospital that people traveled across counties and hundreds of miles for.  I had been in active, induced labor for 4 days by April 12, 2004.  By then, the preeclampsia had become severe.  I was so sick.  I was shaking.  I was bleeding (from a yet-to-be diagnosed placental abruption).  I was being pumped with high doses of pitocin to keep me in active labor — and competing doses of magnesium sulfate because my blood pressures were so dangerously high.  And I had gained an inconceivable almost 100 lbs in edema weight since my admission into the hospital.  My organs were shutting down.  I was hearing Christmas music when there was no sound.  I was dying.  And my babies were, too.

Fast forward to April 12, 2005.  One year later.  Two days before my babies’ 1st birthdays.  The day the woman who was like a second mother to me took her life… a woman who also had breast cancer young (but for her, her diagnosis came in her 40’s)… a woman who was also the mother of one of my two very best childhood friends.  I had known her for what felt like my whole life.  I had lived with her during a rough patch in my life.  And now she lived around the corner from me in a house matching mine.  And she had reached out to me and asked me to spend more time with her…but I was so wrapped up in my own traumas and exhaustion that I didn’t see her as much as I should have.  I thought there would be more time.  And then the call came on April 12 that I was too late.  We all were.

And fast forward ahead again to April 12, 2010.  This was the day before I learned for sure that I had breast cancer.  Nuff said.

But…

I had to put these difficult/horrible memories the back burner because April 12, 2012 was 2 days before my twin sons’ birthdays.  It was also their Spring Recess from elementary school.  So we wanted to do something special and make some happy memories for their birthdays.

We packed up the car the day before and set our sights on Philadelphia.  I never been there, but we had free passes for the nearby Adventure Aquarium in Camden, NJ.  Since it was “only” about an 8 hour drive and we had heard the aquarium was something special, we couldn’t pass the opportunity up.

April 12, 2012.  After a struggle with traffic and an almost unsuccessful quest to find cheap parking, we arrived at the aquarium much later than I had planned.

And I was already exhausted.  You see, only a couple of weeks before I was lying in an operating room while my gynecologic oncologist was performing a radical hysterectomy and oopherectomy on me.  I was 35 and wanted another baby.  But what all of the breast cancer crap would have made unwise and extremely difficult, large masses that we were all certain would come back as ovarian and pelvic metastasis, made perfectly impossible.

surprise the daily post weekly photo challenge cancerinmythirties.wordpress.com breast cancer feeding the stingrays philadelphia camden, nj Adventure Aquarium thirties 30s mom motherhood family sting ray tank touch wadingDespite this, I entered the crowded aquarium in a wheelchair and with a twinkle in my eye.  I was planning to enjoy the day with my boys.

It was when I was handed a map at the admission desk that I first saw it.  There was something special going on today.  At precisely something-o’clock (I don’t remember when the something was!), a few lucky aquarium goers would be selected from the crowd for a special stingray encounter.  Now this wasn’t your average aquarium encounter.  This was an opportunity to wade into the large stingray pool to hand-feed the rays!

I was determined to be one of the lucky few.

But there were a few major issues with my plan.

  1. My plan wasn’t a plan.
  2. I generally don’t win things.
  3. The place was packed.  And I mean packed.  Everyone with kids on Spring Break clearly had the same idea as we did.  It seemed like the whole east coast was in the aquarium.  There was no way I would be able to get anywhere near the stingray tank, let alone in it.

Nevertheless, I told my husband and my boys that I would be in that tank that afternoon.  My husband told me to give it up.  There was no way.  So we visited the other exhibits and made our way through the aquarium.  We were looking at the hippos in a giant tank filled with hippos, fish and hippo poo when I said, “Oh no, it’s 5 minutes til something-o’clock!”

Unable to run because of the surgery and my post-chemo fatigue, I asked my husband to push me over to the exhibit, an exhibit located almost all the way over on the opposite side of the aquarium.  He told me that it was impossible to get there in 5 minutes and that even if I did, I would never get near the tank and I would certainly never be chosen.

No matter.  I called in all of my favors and groveled, something I never ever never do with him.  I was determined.  So we weaved in and out of the crowds and crowds of people and finally made our way around after what felt like an eternity.  When we arrived near the entrance of the giant stingray room and pool, I emerged from the wheelchair and we left it outside.  I walked into a densely packed room filled with children and adults alike.  It was chaos.

And we were late.  They were asking the audience 4 questions.  4 people who were given the opportunity to answer the questions and who answered correctly would be invited into the tank.   The selection process had already begun.  I had already missed question 1.

Question 2 came and at least 50 hands shot up in a crowd of many more than that.  The tank-keeper wouldn’t even see me.  She selected a child in front and, with the assistance of her dad, the girl gave the correct answer.  Question 2 came.  50 or 60 more hands.  She chose a teenager in front who also answered correctly.

The final question came.  “What kind of seastar is this?”  I knew the answer.  My hand shot up with about 1,000 others.  She asked a child.  Wrong answer.  She asked an adult.  Wrong answer.  I was so buried in the crowd that she would never see me.

But then she pointed in my direction.  “The young lady with the longish red-brown hair.”

“Oh, that’s not me,” I thought.  “I have ugly short not red-brown ‘I’ve had lots of chemo’ hair.”

But then I remembered that I was wearing my lovely wig.  It was me.  She was asking me.  “A chocolate chip seastar,” I shouted!

It was the right answer and I was invited to come out of the crowd to get ready for my encounter.

It was incredible.  I changed out of my winter boots and into the crocs they offered me and we walked up the ramp to be debriefed.  We would be given dead fish parts to hold between our fingers and the rays would glide across our hands and take the carcasses into their mouths.

I could barely contain my excitement.  I had never done anything like this before.

cancerinmythirties.wordpress.com thirties 30s stingrays sting ray weekly photo challenge surprise hysterectomy twins aquarium camden, nj philadelphia mom motherhood infertilitySo I waded into the tank and began feeding these beautiful creatures.  It was an incredible experience.  And I made a new friend, a giant ray who seemed to want to climb into my lap like one of my dogs.  He didn’t take the food from me, but let me pet him as he slid up my shins and splashed me.

When it was over and we were washing our feet off and changing our shoes in the little prep room, I was so overwhelmed with the beauty of the experience that I felt the need to say something to the tank’s keeper.

I told her that I was surprised to have been chosen.  Shocked, actually.  I told her that this was such a special experience for me because for the past 2 years I had been battling breast cancer.  She told me that I was so young and she gave me a hug.  She said that she was a 10 year breast cancer survivor.  She said that though they caught hers early, she still looks over her shoulder, wondering if it will return.  But she said that it also makes her grateful for every day that she is here.

I thanked her with tears in my eyes and we parted.  She felt good about her choice.  And I felt grateful for this once in a lifetime opportunity to wade with the stingrays.

cancerinmythirties.wordpress.com breast cancer thirties 30s weekly photo challenge surprise motherhood mom young

Weekly Photo Challenge: Surprise

If you would like to participate in The Daily Post’s Weekly Photo Challenge:

http://dailypost.wordpress.com/category/photo-challenges/

http://dailypost.wordpress.com/2012/12/21/weekly-photo-challenge-surprise/

Update: Received My Cheap Holiday Cards…

cancerinmythirties.wordpress.com breast cancer card cardstore cardstore.com christmas cards holiday bilateral mastectomy thirties 30s deals freebies cheap

Photo Credit: blackcollegereunion.com

Hello dear readers,

Just a quick update on my “Procrastinator’s Unite” post…

cancerinmythirties.wordpress.com breast cancer kids mom thirties 30s Christmas holidays deals freebies freeI received the “test card” I had mailed to my address and was not expecting much when I opened the envelope.  In fact, the deal on the cards was so spectacular — $0.24 per custom photo card including a FREE 1st class stamp!!! — that I was expecting less than ‘not much.’  I was expecting cardstore.com to close up shop in the dark of the night after I placed my order.  I was expecting them to disappear, papers blowing in the wind, tumbleweed rolling by their empty office building…  I was expecting that they would vanish without a trace, their pockets overflowing with my $13.03 (for 55 photo cards and stamps!!!).

But that’s not how things played out.  I opened the card envelope (complete with a FREE 1st Class Stamp) and…the card is lovely!  The cardstock is nice and is a sustainably sourced paper (bonus!).  And the print quality (on both sides) is quite good.

Now I just hope their prices stay low enough to make my next order a great deal — because I will be back!

Wishing you all the happiest of holidays…

cancerinmythirties.wordpress.com breast cancer kids mom thirties 30s Christmas holidays deals freebies free

Weekly Photo Challenge: Delicate

cancerinmythirties.wordpress.com breast cancer weekly photo challenge delicate breasts lump lymph nodes surgery

PowerPort (port) through which chemo and other medicines and fluids can be administered. Also great for lab draws and scans for which I.V. contrast is necessary. I was reluctant to have the port placement ‘surgery’ back on May 7, 2010. But I am so glad I wasn’t given a choice & was ‘forced’ to do it — it has been a lifesaver!

Weekly Photo Challenge: Delicate

If you would like to participate in The Daily Post’s Weekly Photo Challenge:

http://dailypost.wordpress.com/category/photo-challenges/

http://dailypost.wordpress.com/2012/12/14/photo-challenge-delicate/

GUEST POST: A Holiday Season With Cancer

cancerinmythirties@yahoo.com breast cancer thirties young 30s mom motherhood baby Christmas holidays

*Just so there is no confusion, this is me (NOT Heather)*
Christmas 2010

***

I am pleased to introduce guest writer Cameron Von St. James.   I was honored when Cameron approached me to ask about posting an article here.  After reading a little bit about what his family has dealt with, I was also moved and inspired…and I thought you would be, too.  With a new baby to care for and the holiday season just beginning, Cameron’s wife, Heather, was diagnosed with malignant pleural mesothelioma, an aggressive form of cancer.  Their story is both heartbreaking and heartwarming.

Please join me in welcoming Cameron Von St. James…

__________________

A Holiday Season With Cancer

The holiday season has always been near and dear to my heart. It was always a time when my family came together to practice our holiday traditions and give thanks for all that we have in life.

In 2005, I was especially excited for the holidays, as my wife Heather had just given birth to our first child, Lily, and we couldn’t wait to establish our own traditions with our new family. Those feelings of giddiness were stamped out completely when we learned, three days before Thanksgiving, that Heather had cancer.

Our daughter was only three and a half months old when we learned that Heather was suffering from malignant pleural mesothelioma. I knew enough about the disease to be concerned for our future. The anger I felt was overwhelming, and I found myself preparing for the worst.

I dreaded the holiday celebrations that year, during which Heather’s family came to stay with us before she headed off to a treatment center in Boston. During dinners that should have been about seasonal togetherness, we discussed how her family could come to terms with Heather’s deadly disease. We talked about the future of our finances and childcare options for Lily. We made plans to pay for Heather’s expensive treatments, and to my embarrassment discussed how her family could help us stay afloat financially.  Heather and I both worked, but with the new baby money was already tight, and with expensive treatment and travel looming, on top of the fact that we would soon be down to one income when Heather started treatment, we were going to be in real trouble. Heather’s family helped us figure out what we could liquidate for cash, and how much they could afford to pay for. I was mortified and embarrassed, and it would be years before I could look back on that conversation with anything but shame.

cancerinmythirties.wordpress.com breast cancer malignant pleural mesothelioma story stories thirties 30s young mom mother kids holidays Christmas

Mesothelioma
Image courtesy of http://www.mesothelioma.com

I was so awash with negative emotions that I couldn’t see what I now see today. I realize now how mistaken I was to look at this time so negatively.  What I see now is that I was being so firmly supported by our family – people who came from afar to be with Heather, Lily and me during our moment of need. They were willing to help us in any way possible, they offered to make incredible sacrifices of their own for our well-being, but I was so weighed down with guilt and fear that I couldn’t see that clearly.

In spite of the odds against her, Heather eventually beat mesothelioma. This holiday season I want to take the time to give thanks for everything that I have; I know how much family means because of how close I came to losing the most important person in my life. I am so thankful for my little Lily’s continued health and growth and for all the people who helped us through our dark times. Thank you so much! You’ve all given me a reason to look forward to celebrating the holidays.

*******************

Special thanks to Cameron and his wife for sharing their story…

Would you like to be featured here?  

If you have something to share, please send me an email:

cancerinmythirties@yahoo.com

                        

Thank You & Happy Holidays!

Procrastinators Unite! Photo Cards — Printed, Addressed, Mailed w/ FREE STAMPS for $0.25

cancerinmythirties.wordpress.com breast cancer thirties young kids mother motherhood mom 30s Christmas

My Boys — Christmas Card Photo

Still need to order your holiday photo cards, greeting cards or invitations?  Here’s an amazing deal:

Place your order before 11:59 p.m. ET on 12/17 and you will not only receive FREE Standard Shipping (through USPS), but you will also receive 70% off your photo card order.  AND, like I did, you could choose to have CardStore.com address, stamp (with a 1st class stamp!) and mail your cards on your behalf for no charge (THE STAMP IS EVEN FREE)!!!

This is a PHENOMENAL deal!  I ended up paying $0.24 each for my 4″ x 8″ holiday photo cards — printed, addressed and stamped!  All for less than the cost of a 1st class stamp (did I mention that the stamp was free?)!

Of course I did order a “value” design (because “Value” is my middle name — well, not really!) and didn’t have the 1,000 card choice options I’m accustomed to each year, but for $13 for 55 photo cards, stamped and mailed, I didn’t mind.  And even if you choose to class it up a bit more with a Signature or Premium card, this is still a terrific deal!

cancerinmythirties.wordpress.com breast cancer thirties young kids mother 30s

Not really our holiday card — but a quick mock-up! Our personalized text is missing and the pic is pixelated in this one.

My cards were also so cheap because I ordered 55 and received a quantity discount.  I’m not sure how many cards push you into the “quantity” range — and I’m too tired to test it.  But the prices are still low, even without an added discount.  The drawback?  They say that the cards should reach my recipients on or before 12/22.  A little late by most people’s standards, but still before Christmas.  And had I found the deal and ordered sooner, this would have been a non-issue.  But I’m so exhausted all the time & we just got our tree this week & didn’t take our traditional “under the tree” photo until Thursday, so I’m trying not to chastise myself too much!

Celebrating Kwanzaa?  Their Kwanzaa card selection is also governed by the same deals.  Season’s Greetings cards, too.

And, hey, these are such a great deal that you could make New Year’s cards or invitations and be an early bird with them!

Here’s the breakdown of my order: 

55 “Value Design” 4″ x 8″ photo cards (flat)

  •  Each card is Printed, Addressed (my return address and the recipient’s address), Stamped (FREE) and Mailed to my individual recipients!

Cost:

Cards:  $1.09 each  LESS  quantity discount   LESS   70% off ALL Holiday Photo Cards, Greeting Cards or Invitations  =  $0.24 each!

Stamps:  $0.00

Shipping:  $0.00

Grand Total:  $13.03 including 55 stamps!

So, design away!  Just be sure to place your order before 11:59 p.m. ET Monday night to take advantage of all of the discounts.  I’ll include some links below to help you get started.

P.S.  They even include a fancy schmancy Excel spreadsheet template you can use if you don’t want to individually add addresses on their web site.  Login, go to “All You” and click “Address Book.”  Fill in your addresses and when you are ready to order your cards, just import the spreadsheet and, voila, you’ll see all of your addresses there.

P.P.S. I am in NO way affiliated with CardStore.com.  I just found them this morning and am using them for the very first time (in lieu of spending more and ordering from “big-box” stores like I usually do).

P.P.P.S.

The 70% off Holiday Cards code:  CCP2147 — Be sure to enter it at checkout!!!  Expires 12/17 11:59 p.m. ET

Free Standard Shipping or Free Stamps code — There isn’t one, just order by 12/31

Christmas Value cards link:  http://www.cardstore.com/shop/christmas/cards/bargain

Kwanzaa cards link (No “value” option):   http://www.cardstore.com/shop/kwanzaa

New Year’s cards link:  http://www.cardstore.com/shop/new-years

Season’s Greetings Value cards link:  http://www.cardstore.com/shop/seasons-greetings/bargain

————–

Happy Holidays!

Weekly Photo Challenge: Changing Seasons

A collection of photos for the changing seasons:

cancerinmythirties.wordpress.com breast cancer winter photo challenge changing seasons illness

Fall Becomes Winter
“Winter Through the Window”

cancerinmythirties.wordpress breast cancer weekly photo challenge changing seasons swan

Winter Becomes Spring

cancerinmythirties.wordpress.com breast cancer breast cancer changing seasons beach bald

Spring Becomes Summer

cancerinmythirties.wordpress breast cancer weekly photo challenge changing seasons leaves stoneybrook park autumn

Summer Becomes Fall

If you would like to take part in the challenge, please visit:

http://dailypost.wordpress.com/2012/12/07/weekly-photo-challenge-changing-seasons/

http://dailypost.wordpress.com/category/photo-challenges/

Thank you!

$50 Straws AND How Cancer Changes Everything

cancerinmythirties.wordpress.com breast cancer mastectomy  hospital port

A different day. A different place. In a less hospitally-looking reclining chair at the Cancer Center.

This will probably seem like an odd post, but I’m going to present a snippet of my afternoon from two different perspectives for no other reason than “just because.”  Thanks for indulging me.

Scenario 1:

Across the room, a girl sits in a recliner with a small table beside her.  She is sipping a large cup of tea.  The tea bag tag dangles gently over the edge of her cup. The girl stares off into the distance and a smile crosses her lips.  What is she thinking about?  Perhaps she is remembering a lover from her college days?  Maybe she is picturing a basket of puppies?

Wait… judging from a frame most would describe as thin and a belly that is unmistakably large and rounded, it’s clear that she must be pregnant — she must be thinking of the baby growing in her womb.  Yes.

Her eyes light up as she thinks of the “baby duckling yellow” paint color she and her husband chose for the baby’s room this morning.  “It’s not too masculine, not too feminine, and it will be easy to paint over if we decide to change it when the baby gets a bit older.”  She bites her lip as she wonders how she is going to wait for the next three months to meet her new baby.  She has slipped her calendar out of her purse and is making a list of baby names now.  It’s the same list she and her husband have been coming up with every night before bed.  But she thinks she might have a revelation and “the one” might pop into her head today.

She continues her list.

She is mostly alone as she relaxes in the large open room filled with beds and curtains and chairs just like hers.  Mostly.  She has a number of visitors over the course of the next hour.  Each one stops by to chat briefly with her.  She laughs and talks with them individually.  And then her visitors move on, one by one.

She continues to sip on her unusually large cup of hot tea. Her final visitor is dressed in white and bears the name of her grandmother.  Her hands are full, but with what?  It’s hard to say.  The visitor dressed in white sits across from the girl and then leans toward her for an unusually long time.  She holds what looks like a long, shiny pin or needle in her hand.  Odd.  But when she stands up to walk away, her hands are empty and she and the girl are both smiling.  She now has something pinned to her chest — a flower perhaps?

Just as her name is called she looks at her list.  She is clearly pleased with her accomplishment and is excited to share this new name with her husband.  It was her grandmother’s name.

She slides gracefully out of the chair (well, as gracefully as a pregnant woman can) to meet the woman who beckoned her.  They walk happily down the hall together and slip into a room nearby.  The door closes behind them.

When they emerge, they are smiling and walking again.  The girl is stroking her belly, as if to comfort the baby inside.  She returns to her chair as the lady in white brings her a cocktail with one of those cute little paper umbrellas poking out from the rim of the glass. She relaxes for a bit longer before rising from her comfy chair, bidding adieu to her friends and walking out to greet her waiting husband.

————————————————

cancer in my thirties cancerinmythirties.wordpress.com breast cancer 30s cartoon

Cartoon Credit: chibird.tumblr.com

Scenario 2:

I am sitting in a large, sterile room.  Across the way, I see a girl…or a woman, really.  She looks biologically young, but I can tell she has been weathered by experience.  Something tells me that she probably still thinks of herself as a girl in the quiet morning hours when everyone else is asleep.  So I will indulge her and call her “a girl.”  It’s the least I can do.

The woman, uh, girl, is sitting in a reclining hospital chair.  Beside her is a small table where alcohol swabs and some medical paraphernalia sit. She holds a large, lidded Styrofoam cup, the largest one I have ever seen, in her hands.  Dangling on the side of the cup I see a tea bag tag.  She looks at the bit of wisdom the tag has to dispense, rolls her eyes, and takes a sip from her straw.  Odd that she is drinking hot tea through a straw.  Maybe she’s one of those women who don’t want to stain their teeth so they drink their tea and coffee through straws?

Just then a nurse walks over to her and asks her to sign a form stating that she understands the risk of drinking this tea.  WTF?

Well, it’s not your average tea.  It’s tea that has been infused with a radiocontrast agent.  Is it radioactive tea?

The girl stares off into the distance and a smile crosses her lips.  She is thinking of a sandy beach in a warm place far away.  “If this is more cancer,” she thinks, “I am moving to that beach.”

She puts her hand on her protruding belly and secretly hopes one of the nurses will ask her if she is pregnant when she signs the next consent form.  It’s an odd thing to hope for, almost masochistic, really.  She pictures what she would say in response to the question.  “Of course I’m not pregnant.  I’ve been gutted.  Every part that makes me a woman (except the “V” one) has been stolen from me.  I am empty inside.  Dead inside.  And, oh, this?  It’s edema.  My belly is swollen with fluid.  No baby.  I’m here to see if it’s cancer in here, not a baby.  My fate was sealed at 33 when those lumps in my breast were written off as nothing.”

Of course no one asks her if she is pregnant.  They all know the answer.  They all know why she is here.

And she wouldn’t have the guts to say what’s on her mind, anyway.  She wouldn’t want to hurt or bewilder anyone.  She wouldn’t want to ruin anyone’s day.  So she thinks about what she would really say.  “Nope, just fluid.”

She snaps out of her daydream when a second nurse asks to see the port in her chest.  They’ll need it later.

She slips her calendar out of her purse and tries to recall the appointments she has scheduled for next week.  Her fuzzy chemobrain has made it impossible for her to remember much these days.  She soon finds herself drawing seagulls and starfish in the margins.  “Oh, to have my toes in the sand right now and to be anywhere other than here,” she dreams.

She shifts gears and makes a list of everything she needs to do when she leaves.  Her 3rd graders — twin boys — will be waiting for her.  It will be dinnertime.

She is mostly alone as she sits in the large open hospital room filled with curtains on tracks and not rods, hospital beds and hospital reclining chairs just like hers.  Mostly alone.  A number of nurses stop over to check on her progress with “the drink” or to ask her to sign a form.  She smiles and makes small talk with each of them.  And then her visitors move on, one by one.  She continues to sip on her unusually large cup of hot tea.  Through a straw.   That’s probably so she doesn’t spill the giant cup of lukewarm possibly radioactive tea on herself.

Her final visitor is dressed in white and bears the name of her long deceased grandmother.  Nancy.  Her Nanna was one of her most favorite people in the world.  She watched her die a painful death from cancer when she was 8 through 9 years old. “My kids are 8, too,” she thinks.

The nurse sets up a tray with everything she needs to access the girl’s port.

She holds a long shiny needle and asks if the girl likes to hold her breath or if she applied the EMLA cream in advance to make it hurt less.

The girl laughs, “No, no need.  Just go ahead.”  She has been poked and cut so many times it’s not even funny.

The needle punctures her upper right chest skin and enters her port.  Now they will be able to push the intravenous radiocontrast agent through her chest.

The nurse dresses her port with a tegaderm and gauze.  With the little yellow butterfly clip sticking against the transparent tegaderm, it almost looks as though the girl has a flower pinned to her chest.  An ugly flower, but a flower nonetheless.

Just as her name is called, she looks at her list.  She is already tired, but smiles at the thought of being able to sit down with her kids when she is done.

She drags her body from the chair to meet the woman who beckoned her.  They walk quietly down the hall together and slip into a room nearby.  The door closes behind them.

When they emerge, they are smiling faint smiles and walking again.  The girl is doing that thing she does — looking dizzy and as though she is going to hit the deck.  She strokes her sore belly.  The nurse asks her to lie down until she feels better and says that people who receive the contrast through their ports need to wait 10 minutes for observation before they can leave anyway.  The nurse brings the girl a drink.  This time it’s plain cola.  Nothing added.  The nurse puts a bendy straw in the Coke.  The straw wrapper bears the name of a famous medical supplier.  “Yikes, a straw from a medical company!  It probably cost $50,” she thinks.

When her 10 minutes is up, she is so ready to leave that she walks out in her disposable drawstring hospital pants and stuffs her slacks in her bag.  It’s time to go home.

———————————–

So I was sitting in one of those recliner-type hospital chairs drinking oral contrast in preparation for my CT scan when I started thinking about perspective.  Of course the “girl” above is me…

Thanks for reading… Your comments and “Likes” brighten my life…

Grateful Am I…

oopherectomy hysterectomy breast cancer cancerinmythirties.wordpress.com 30s incision liver lab

After not posting for a week, I thought I would put my concerns about poor liver function tests, leg and abdominal edema, and the words of the medical professionals who urged me to “get myself to the Emergency Room” this week aside and return with a post focused on gratitude.

A fellow blogger has honored my little blog with an “Illuminating Blogger Award” and I’d like to take a minute to acknowledge how thankful I am.

Many thanks to http://theretiringsort.com/!

breast cancer in my thirties cancerinmythirties.wordpress.com 30s

*********

The rules for accepting the award are as follows:

  • Leave a comment on the original award site
  • Share a random fact about yourself:  My dream job would involve saving sea turtles.
  • Choose 5 bloggers to pass the torch to. Here they are:

***

1.  http://bornbyariver.wordpress.com

2.  http://travelgardeneat.com/

3.  http://lesleycarter.wordpress.com/

4.  http://keepingitrealmom.com/

5.  http://clanmother.com/

Thank you, “The Retiring Sort!”  Thank you to the bloggers listed above (whose blogs brighten my days).  And thank you to everyone who takes the time to read and follow my blog!

Oh No, I’ve Been Robbed! Did Cancer Steal My Compassion?

cancer in my thirties young 30s hospital

Cartoon by Robert and Donna Trussel http://donnatrussell.com/cancer-cartoons/

So I spent Thursday night through Friday morning in the E.R. with one of my sons.  I was reluctant to go in, but his 106.2 degree fever and listlessness made it necessary.  Though no one likes the emergency room, I have a developed a particular and overwhelming distaste for the whole hospital scene.  And, sadly, this hospital overnight prompted me to realize how “jaded” I’ve become when it comes to the severity of symptoms and illnesses in general.  Call it another side effect of being a cancer patient.

What I am afraid to admit out loud — and even really hesitant to share in this, my somewhat anonymous blog, is that I am beginning to wonder if cancer is interfering with my ability to be the kind of parent and person I want to be (and the kind of parent/person I used to be).

While procedures and blood draws and surgeries and medications and side effects and…(well, you get the picture) have become the norm for me, they are not the norm for everyone.  And, fortunately, they are not the norm for my children.  But I sometimes lose sight of the fact that everyone hasn’t spent what amounts to months (when you add up all of my time as an inpatient and outpatient since my cancer diagnosis in April 2010) in hospitals and cancer centers for surgeries, life-threatening infections, chemo, radiation, appointments, monoclonal antibody infusions, port blood draws, tests and procedures.  Or that not everyone is waiting to find out if that lesion in their brain is malignant or if their liver function and lab values are so poor because the cancer may have metastasized to a vital organ.

cancerinmythirties.wordpress.com breast cancer thirties 30s funny medical cartoons I see my new perspective reflected in my everyday life.  Someone will tell me about a symptom they’re experiencing or about their cold or papercut and I try to be supportive and kind.  In my mind, though, I sometimes find myself wandering off to thoughts of how upsetting it might be for them if they had to have their breasts cut off and their lymph nodes dug out, if they faced each day with a constant headache, if they had to manage life with lymphedema, or if they lived their lives with unrelenting neuropathy (a leftover gem from the chemo) that gets so bad that it interferes with their ability to concentrate/type/hold a glass.

Or when I hear a pregnant woman my age talking about heartburn or swollen ankles and I am consoling on the outside, but inside I am thinking about how the large masses in my pelvis and ovaries prompted two painful surgeries and the loss of what remained of all but one of my female parts (in case you are wondering, it rhymes with bagina).  And then I drift off to a mental picture of the baby girl I will never get to hold in my arms because:

a.) You need a uterus to have a baby — and ovaries and Fallopian tubes and a cervix lend something to the process, too.  But all of these things filled my gynecologic oncologist’s specimen jars and were sent off to a lab and probably a garbage bin somewhere.

b.) Who would allow someone with my medical history to adopt a baby?  As much as I would love to be here to raise a new little baby, let’s face it, I am clearly a flight risk.

I thought of a “c”.

c.)  I know surrogacy has gained popularity.  But that’s not even an option for me because my eggs were stolen.  Okay, they weren’t stolen.  But it feels like they were.

And I have that heartburn and those swollen ankles (and legs), too.  Two years of chemo and Herceptin messed up my kidneys and made edema a big problem for me.  And I have my dusty bottle of Nexium for my acid reflux disease, but I stopped taking it because I take so many pills that I’d rather look at those pretty purple capsules than ingest them.

cancerinmythirties.wordpress.com breast cancer thirties 30s funny medical cartoons

Cartoon Credit: Robert & Donna Trussel
http://donnatrussell.com/cancer-cartoons/

The bottom line is, even though I want to feel sorry for you because you have a cold, inside I am dreaming of what it would be like if a runny nose and congestion were my biggest medical problems.  Not so deep down I am wishing I could just take some NyQuil, hop into bed, and wake up the next day and be all better.

This is NOT me.  This is NOT who I am.  I am was a kind and thoughtful person before cancer left my spirit beaten and bruised.  Even if I felt like I like was dying, I would put your illness ahead of mine.  I would comfort and take care of you.  I would ask what I could do to be there for YOU.  Even if I had just had surgery myself, I would gladly and altruistically chop vegetables and brown chicken for your homemade chicken soup.  And I would do it without a second thought.

Though my ovaries weren’t technically stolen, I feel like the deeply compassionate person I used to be was.

While this isn’t great news for most of the people in my life, it is worse news for my twin 3rd graders.  I fear that there will come a time when I devalue their medical experiences, their illnesses, their scrapes and bruises, their throat cultures and their trips to the doctor for a flu shot or a blood draw, or the sessions with the nebulizer to that help with their asthma.  And that’s just not good.

cancerinmythirties@yahoo.com breast cancer thirties 30s mom hugging roo baby hysterectomy death dyingSo I am trying my best to undo some of what the cancer has done.  I am making a conscious effort to put the severity of some of my experiences aside to look at things as they are for other people and to avoid comparisons.  I am trying to give my boys the special hugs they need for their scraped knees and to talk them through their fears of having blood drawn or shots given.  And, as was the case this week, I am putting my own exhaustion and pain and sickness aside (as much as I can, anyway) to care for these boys who need me.  Case in point — even though my brain shouted, “Don’t do it!” because I am leukopenic and neutropenic, I climbed into my son’s hospital bed to cuddle with him because he was worried about what was going to happen to him… While I can’t guarantee that it always will, my heart won this time.

I am really trying to do what counts for my kids.  But I may still look at you with envy when you tell me you have a cold.

*Special thanks to Donna & Robert Trussell for allowing me to use their fantastic cartoons*

PLEASE stop eating PLASTIC!

cancerinmythirties.wordpress.com breast cancer thirties 30s young plastic

Please Try a Sandwich Instead!

After hearing yet another “young” person’s cancer story, I feel absolutely compelled to write this post.  It’s too late for me to prevent my cancer, but it may not be too late for you or your mother, sister, daughter, friend, wife, husband, son, father, aunt…

I am writing today to urge you to limit your intake of the harmful chemicals found in plastic.  Because the dangers of plastic use have been largely ignored by the powers that be, you probably ingest more chemicals than you even realize each and every day.

As a breast cancer patient diagnosed in my early thirties, I am literally sick cancerinmythirties.wordpress.com breast cancer plastic mastectomy bpa fda garbageover this.  I am actually quite surprised that I haven’t posted about this topic sooner because it is something I think about every day.  Until I was aware of the danger (at some point after my cancer diagnosis), I ate and drank from plastic packaging at least as much as the average consumer.  I used plastic water bottles and those plastic travel coffee mugs all the time.  I left water bottles in the hot car and drank from them without a thought.  I consumed soups and other foods from cans, used plastic food storage containers, plastic wrap and plastic bags, and I didn’t think twice about handling store receipts coated with BPA (bisphenol A, a hormone-disrupting chemical often found in plastics and register receipts and linked to cancer, obesity, heart disease and other diseases).

cancerinmythirties.wordpress.com breast cancer awareness pink ribbon mastectomy illnessCan I blame my cancer on my exposure to the chemicals in plastics and other products?  No, probably not entirely.  But do I think this played a role in encouraging my illness?  Yes, definitely.  As a young person with no family history and no risk factors for breast cancer, I feel pretty justified in pinning some of the blame on an environmental cause, especially since I am in a segment of the population that has seen an increase in breast cancer rates since plastic use became so widespread.

Plastic is EVERYWHERE.  Food, drinks and personal care items like lotions and cosmetics are packaged in plastic more often than not.  This makes chemical exposure almost inevitable.  I have tried to eliminate plastic from my life (and from my children’s lives) but have determined that this would be far too costly and time consuming for tired ol’ me.  In the world we live in today, plastic exposure is virtually unavoidable.  So I have refocused my energy on limiting our plastic use.

cancerinmythirties.wordpress.com breast cancer plastic landfill mastectomy bpa fda

Some of my favorite ways of reducing our plastic exposure:

-We drink from glasses and mugs whenever possible.  I have recycled most of the kiddie cups that once filled the shelves of my

cupboard (and I wish I could take back the years I used plastic sippy cups for the kids).  We make a concerted effort to use non-plastic drinking vessels now.

-I reuse my empty glass Snapple bottles.  I fill them with water (and other beverages) and carry them in lieu of a plastic water bottle.  I  usually keep one or two with me and have a couple in the fridge so I can just grab them and go.  Of course you can do this with any glass bottle.  Not only will you be making a healthier choice for yourself, but you’ll also be making a good choice for the environment.

-We store food in glass and never in plastic.  At first this was really difficult because I just had a few glass storage containers.  cancerinmythirities.wordpress.com breast cancer plastic bpa glassI made makeshift containers by putting plates on top of bowls as lids — not a good use of space!  But I have since asked for Pyrex for Christmas and birthdays and my little collection is growing.

-We have reduced our use of canned foods.  BPA is often found in the lining of food and baby formula cans.

-I avoid leaving cosmetics, lotions and other liquids packaged in plastic in the car.  You may have heard the warning about not leaving water bottles in the car for the same reason — heating plastic encourages the release of toxic chemicals.

-We don’t use “steam in the bag” foods like frozen vegetables.

-Whenever glass is available (for food, beverages, personal care products), I’ll choose it over plastic, even if it costs a little bit more.  We are on a REALLY tight budget, but I think it’s worth it. cancerinmythirties.wordpress.com breast cancer plastic carcinogens chemicals Unfortunately, though, it’s not usually a choice — glass is often hard to find.  Even the organic hormone-free milk at my grocery store comes in a plastic container!

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Why am I publishing a post like this?  It is not because I’m having a bad day and need to vent (that’s just a coincidence!).  It is not because I am trying to blame someone for the hell I have been through in the past few years.  It is because I want to save someone else from the pain and the loss I have experienced and will likely continue to experience.  It is because I want to save YOU.

While I realize you may not be able to nix plastic from your life entirely, I hope you will please do your best to cut out as much plastic exposure as possible.

And PLEASE ask your friends and family and everyone you care about to do cancerinmythirties.wordpress.org breast cancer squirrel nuts plastic carcinogen bpa fda mastectomythe same.  If you are worried about sounding like an alarmist or a nutcase or a conspiracy theorist, take comfort in the fact that there is enough evidence to support the cancer – plastic link to validate your plight.

You can also consider joining an email writing campaign to urge companies to use safer packaging.  Or sign a petition urging the FDA to ban the use of packaging that contains carcinogens.  Here’s one asking the FDA to ban BPA, a carcinogen found in cash register receipts, in many of the plastics we eat and drink from, and in the bodies of more than 80% of Americans!  It will just take a minute and could make a big difference:

http://www.change.org/petitions/fda-get-cancer-causing-chemicals-out-of-all-food-packaging-now

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I googled “breast cancer plastic” and at the top of the list of search results (other than images of plastic ‘breast cancer awareness’ items — that’s another blog post!), I found an article that was featured on one of my favorite go-to sites for breast cancer information and support — breastcancer.org.  While I love bc.org and think the article is great for creating awareness, I do disagree with one section.  It lists “safe” plastics, but based on my research, it seems there may be no truly “safe” plastics.  Plastic = Chemicals.  Right now the focus is on BPA which was long considered “safe” by the FDA (we’re talking half a century here!).  I believe it’s just a matter of time before more of these chemicals are studied and deemed carcinogenic.  In the meantime, here is the breastcancer.org article:

http://www.breastcancer.org/risk/factors/plastic

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cancerinmythirties.wordpress.com breast cancer plastic turtle mastectomy bpa fda

Of course I hope you will share this post with everyone you know and I hope you will work to reduce your chemical consumption.  But I know that’s a lofty dream in today’s world.  So, please do whatever you can.  Whether you do one of these things or all of them, know that I am proud of you.  

If we can prevent even one more person from getting sick, we’ve done something good.

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If you have an idea for a way to reduce plastic use, please share it with us!   Thanks!

Follea’s Breast Cancer Wig Giveaway

cancerinmythirties.wordpress.com

Me During Taxol — just before beginning radiation — January 2011. This is a wig! I had a shiny bald head underneath this lovely hair.

The post below was left as a comment on my blog.  I wanted to share it with all of my followers who have cancer — or who know someone who is receiving treatment.  Share your story (or your friend’s, sister’s, daughter’s, mother’s, wife’s, etc. story) and you could win a lovely new wig or sleep cap…

I won’t enter myself because I have hair now, but I hope you will consider entering…

Best wishes!  🙂

And thank you to Follea, Lisa Elia and Candice Cousins for sharing this info!

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Deadline for Submissions 11/18: Follea’s Breast Cancer Wig Giveaway – 6 Winners Will be Selected

Dear Cancer in My Thirties,

We believe you and your followers may be interested in Follea’s Breast Cancer Wig Giveaway on Facebook. Participants who share their inspirational story will have the chance to win a Gripper-2 wig, a beautiful Tres Chic wig or a super-soft bamboo sleep cap. To view the Follea video “A Woman’s Spirit is Unbreakable: A Tribute for Breast Cancer Awareness Month”, visit
http://www.youtube.com/watch?v=bhD75zYz92M.

Here are the Follea Breast Cancer Wig Giveaway instructions, which can also be viewed at http://www.facebook.com/follea:

1. There are two different ways that a woman with breast cancer can be submitted for a chance to win these prizes:

• A woman with breast cancer can create and submit a short video about her journey with breast cancer, how it has affected her life, and how she is dealing with it.

• A friend or family member of a woman with breast cancer can submit a video about how their loved one who has cancer inspires them.

2. Submit video by Sunday, November 18, 2012 at 11:59 pm PST.

3. All winners, including grand prize, second place and third place winners, will be determined based on the number of votes a contestant receives, in comparison to their competitors. Voting closes Friday, December 14, 2012, at 11:59 pm PST. :

• The grand prize winner will receive her choice of either Follea’s Gripper-2 Sport or the Gripper-2 Cool, from Follea’s innovative and luxurious 2012 Gripper-2 Collection. The winner will select from one of five standard sizes and available standard color and length specifications.

• five second place winners will receive one of Follea’s beautiful, short-style, premium European-hair Tres Chic MM6 wigs.

• 50 third place winners will receive one of Follea’s super-soft bamboo sleep caps.

4. Follea will announce the winners on December 17, 2012 at 12:00 pm PST.
Also, every Friday through December 14, Follea will conduct a random drawing of all of the contestants’ names, giving all participants the chance to win one of Follea’s bamboo sleep caps every week.
About Follea: The company’s 2012 collection includes wigs and hairpieces that are specially designed for women with little to no hair such as the Gripper collection, which is light, breathable and stays securely in place with affixed medical grade silicone tabs. Follea has ICARe representatives and ICARe salons around the world, so women can get hands-on help choosing just the right wig or extensions to suit their needs.
Would you like to receive any additional information?
Best regards,
Lisa Elia
Lisa Elia PR
310-479-0216

Weekly Photo Challenge: Renewal — Confessions of a Former Mermaid

cancerinmythirties.wordpress.com breast cancer ocean hawaii photo mastectomy sick

One of my most favorite places in the world
cancerinmythirties.wordpress.com

The Daily Post’s Weekly Photo Challenge subject for this week is renewal.  The word can mean different things to different people.  But for me, one word comes to mind — SEA.

Perhaps I was a mermaid or a sea turtle in another life?  Or perhaps my love of the water is a genetic trait passed down for generations by my English and Scottish ancestors, much like my blue eyes and my dimples?

breast cancer mastectomy hawaii beauty ocean sea

Regardless of how difficult life can be and how sick I have felt at different points along this rocky road since the cancer diagnosis, there is always one place where I feel safe and healthy and whole again.  There is one place where I feel renewed.  And that is in the ocean.

Pools are lovely.  And the lake is okay.  But the sense of relief I feel when I walk into the ocean or into Florida’s warm gulf waters just doesn’t compare.  It is as if I am home again.  Let me swim in lovely warm sea water and I feel refreshed and renewed and ready to face the world again.

Unfortunately, I don’t have many opportunities to visit the water and I live in a region that is cold half of the year.  And the bathtub just doesn’t cut it!  So I live for our trips to the sea and hold fast to all of the memories I’ve made in the water… And I dream of the next time I will be able to immerse myself in Florida’s warm blue oasis.

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breast cancer bilateral mastectomy hawaii seaIt was almost 2 years ago when I was shifting treatments from Taxol (chemotherapy) to radiation.  I had a 10-day break in between, so we cashed in our credit card miles and flew to Hawaii.  I was terribly sick from 9 months of treatment.  I had a shiny bald head and was swollen from the steroids and kidney trouble.  And it hadn’t been that long since my mastectomy.  I was a disaster.  But the trip was a dream come true.  How fortunate I felt to be able to dip my toes into Hawaii’s alluring waters.  It was a little too chilly for swimming for my fragile body for most of the trip, but just having the opportunity to absorb so much beauty was incredibly uplifting and replenishing for my mind and soul.  Here are some of the photos from that unforgettable vacation.

breast cancer thirties young bilateral mastectomy hawaii ocean sea bald

Thanks for reading!

breast cancer thirties bilateral mastectomy hawaii plane ocean

breast cancer thirties bilateral mastectomy hawaii plane ocean kailua lanai

breast cancer thirties bilateral mastectomy hawaii plane ocean

breast cancer thirties bilateral mastectomy hawaii plane ocean sea turtle mom

Sea Turtle

To participate in the Weekly Photo Challenge:

http://dailypost.wordpress.com/2012/11/08/weekly-photo-challenge-renewal/

dailypost.wordpress.com/category/photo-challenges/

what my 8~year old son has to say…

One of my sons asked if he could post something on my blog.  He wrote the title and what follows here all by himself!

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breast cancer mom kids boys mattie dog lymphedema mastectomy

From my 8-year-old son:

Cancer is a jerk of course every one nows.

my mom has CANCER  its bad because my mom can not do that much stuff.

I WANT TO DOODOO on cancer  🙂

I HATE IT I HATE IT I HATE IT.

thank you for following my mom readers

revelation from a chilly gray day: I am Cancer’s Bitch

cancerinmythirties.wordpress.com cancerinmythirties breast cancer infertility baby hysterectomy

my lovely niece & me — the summer before my diagnosis

I waited a lifetime for you

but I guess it wasn’t long enough

I think of the babies I’ve lost

and wonder if you were one of them

I’m missing the baby girl

I always thought I’d have

Saw two pink lines last year

My heart soared but my stomach twisted

The hormones that sustain pregnancy

give cancer cells fuel, too

I didn’t care

I wanted you

Even if it meant more sickness for me

“I guess it’s one last chance,” she said.

“Stupid move,” he said.

Doctors.

But I was never meant to hold you in my arms.

Was it the Tamoxifen?  Was it my lack of health?  Was it the weekly Herceptin infusions?  or the steroids?  or the other meds they prescribed?  Or was it just a cruel twist of fate?

As quickly as it began, it was over — and you were gone

Then they found the masses in my pelvis

and the surgeries took my hope of ever seeing you away

and reminded me that I am Cancer’s bitch

cancerinmythirties.wordpress.com cancerinmythirties breast cancer infertility baby hysterectomy

Unfortunately for my big dog, my little dog rules the roost just as this cat does!

I’ve forgotten where I first heard a young person describe someone else as their bitch, but I’ve heard the reference a few times — and I never thought I’d use it.  But it seems fitting here.  I sometimes feel that despite my efforts and success with being positive and despite the hell I’ve put my body through, cancer often finds a way to remind me that “it” isn’t really up to me.  And I know this feeling is shared by other cancer patients/survivors.  Cancer is bigger than me.  It is bigger than all of us.

*From wiki.answers.com (because I always look for reliable sources and because if it is written on the internet, it must be true! ha ha):  “If you are “someone’s bitch”  it means they can tell you what to do and you have to listen and do what they say when they say it.”

DP Challenge: I Wish I Were… Going to Live to See My Kids Grow Up

 

breast cancer thirties 30s motherhood death dying

I’m a little late to the party, but I just discovered The Daily Post and the blog’s weekly challenge for bloggers.

This week’s challenge is to finish this sentence:  “I Wish I Were…”

Thirty years ago I would have said, “I wish I were a farmer or a doctor or a scientist.” Twenty years ago I would have said, “I wish I were destined for greatness.”  Ten years ago I would have said, “I wish I were someone who could change the world in a positive and enduring way.”

Today I would say, “I wish I were going to live long enough to see my twins turn eighteen.”

Of course I know it is still possible.  “They” say anything is possible.  I just don’t think it is very likely.  No, I’m not one of the women on those TLC shows about ladies who have their first baby at age 70.  And, no, I’m not someone who believes in the Mayan Calendar doomsday prediction for next month.

I am just a mom in her thirties who was diagnosed with Her2 positive Stage IIIc breast cancer when her little boys were in kindergarten.  I now realize that to these young boys, I am a doctor, a farmer and a scientist.  To these little boys, I am great.  And if I can just stick around long enough to help them grow, I will be changing the world in the most positive and enduring way possible…

breast cancer thirties babies 30s death dying love

*If you’d like to take the challenge yourself: http://dailypost.wordpress.com/2012/10/29/weekly-writing-challenge-i-wish-i-were/

About My Brain

brain lesion cancer breast metastasis

So I fell down the stairs again today.  I hit my head pretty hard.  And I managed to land on a section of my back that was already hurting quite a bit.

This reminded me that I never posted a “brain update” after my last oncologist entry earlier this month.  I guess I didn’t really forget to write about it, I just didn’t because I didn’t know what to say after my appointment with the neurologist the next day.

I’m still not really sure what to say.  When I arrived at the neurologist’s office, I took a seat in the waiting room with a double-sided questionnaire about my symptoms.  I pretended to fill it out, but I was just sitting there lost in thought.  I had just filled the same paper out a couple of weeks prior and my answers probably hadn’t changed, so I thought the time would be best spent staring off into the distance, clipboard on my lap and pen in my hand.

I only had a few minutes of quiet before my neurologist walked out into the big waiting room, purse on her arm.  She said ‘hi’ and said she’d be back for me as she walked out of the door.  The nurse came out moments later and took me back to the vitals station and proceeded to take my blood pressure, etc.  Before he finished, my doctor was back.  She said she’d take it from there.  She walked me back to the scale, took my purse and coat, and I stepped up to be weighed.  We then walked back to the room.  She carried my purse, her purse and my coat and chatted with me during our short walk.  She set our open purses down on her desk and I took a seat next to her.  She told me she was glad I came in because she wanted to show me my MRI so I could see “IT” for myself.

We chatted as though we were girlfriends out having a coffee date and as though we were discussing our husbands, kids, dogs, and the piles of laundry waiting for us at home.  The only difference was that the coffees were waters, the table was an exam table, and we weren’t talking about what we were making for dinner.  We were talking about the lesion in my brain.

She showed me my brain MRI.  There was the lesion.  And then the same area on my MRI from about 8 months ago.  No lesion.

Not really coffee shop conversation.

When I asked if it was a metastasis, she said that it may not be malignant.  She said that they typically see a lot of “mass effect” with malignant tumors.  (*Mass effect is damage to the brain due to the bulk of a tumor, the blockage of fluid, and/or excess accumulation of fluid within the skull.)  She said that this ‘mass effect’ was lacking on my MRI.  I asked, “Could the mass effect be lacking because it is such a new lesion?”  Maybe.  “But it could also be because it is something benign?”  Yes, definitely a possibility.  Looking at the lesion’s shape, I wondered, “Could it be because I swallowed a small grape and it went the wrong way and lodged in my brain?” But I figured that was pretty unlikely!

cancerinmythirties.wordpress.com brain cancer lesion thalamus breast cancer

The thalamus is the red area

The kicker (well, one of them!) is that it is deep in my brain — within the thalamus.  Not an easy place to access for biopsies, etc.  So no easy way to know for sure what it is.  My neurologist feels the best way to proceed is to wait a couple of months and repeat the MRI.  If it is malignant, we should expect changes.  If I have an increase of symptoms, it sounds like we can do it sooner.

Then there’s also that abnormal EEG that prompted the MRI.  So I don’t really know what to think.  On the one hand, I feel sick to my stomach because the cancer may have metastasized to my brain.  But on the other hand, I’m really hopeful that it hasn’t.  And at this point, I guess I should feel pretty grateful that it’s only a maybe and not a definite.

Cancer is the gift that keeps on giving…

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In case you were wondering what the thalamus does:

**”The thalamus has multiple functions. It may be thought of as a kind of switchboard of information. It is generally believed to act as a relay between a variety of subcortical areas and the cerebral cortex. In particular, every sensory system (with the exception of the olfactory system) includes a thalamic nucleus that receives sensory signals and sends them to the associated primary cortical area. The thalamus is believed to both process sensory information as well as relay it—each of the primary sensory relay areas receives strong “back projections” from the cerebral cortex.

The thalamus also plays an important role in regulating states of sleep and wakefulness.[9] Thalamic nuclei have strong reciprocal connections with the cerebral cortex, forming thalamo-cortico-thalamic circuits that are believed to be involved with consciousness. The thalamus plays a major role in regulating arousal, the level of awareness, and activity. Damage to the thalamus can lead to permanent coma.”

* Information from: http://www.mayfieldclinic.com/PE-BrainTumor.htm

** Information from: http://en.wikipedia.org/wiki/Thalamus

I Want Out… Right?

As we were driving home the other night, I kept replaying the gas station scene from The Bridges of Madison County in my head.  You know, the one where Meryl Streep’s character is sitting in the car while her husband is pumping the gas.  She sees Robert Redford, the man who has asked her to run away with him.  Redford is also the man with whom she has had an affair and with whom she could have a completely different life.  She reaches for the door handle, almost prepared to pull it and to run out on her life to begin anew.  Almost. She can’t do it.  With tears in her eyes — because she knows what she is giving up — her hand drops from the handle when her husband returns to the car and they drive away.

It has been a long time since I last saw the movie and there were parts of it I didn’t agree with like, um, the adultery…  But that scene in the movie has stayed with me.  For me, though, Robert Redford would not represent a man I’ve slept with (because there haven’t been any since my husband), but he would represent an opportunity for a new beginning, a different life.

This is an odd topic for me to write about because I would never have expressed these thoughts before.  It’s kind of comical, almost like I expect angry black crows to fall out of the sky and to begin attacking me or that I think a fiery explosion might wipe  my whole family out in an instant, simply because I’ve allowed myself to wonder what it would be like to have a life that isn’t so difficult and, dare I say it, painful.

I never had these thought before.  I grew up in poverty and was teased for it right up until high school started.  I experienced important and traumatic losses at early age.  I grew up without a Dad — after living with a Dad who was abusive and drunk most of the time.  And blah, blah, blah…  The point is, I have never been a stranger to struggle or compromise or death or pain or loss.  But I never questioned my life or my choices or how other people’s choices affected my life.  I never looked at any of it with regret or disdain.  It was my life, for better or worse.  If there was something I didn’t like about it, I would work hard to change it.

I didn’t have any real regrets…  Until I was in the midst of a chemo combo that made me feel like I was inches from death.  I was so sick and needed to be nurtured and cared for and needed a partner to hold my hand — or, at the very least, someone who didn’t feel the urge to fight and argue with me or the kids all the time.  And then when I had the bilateral mastectomy and the hysterectomy, I tried to pretend these surgeries didn’t bother me and that I could roll with the punches.  And I did.  I just handled the pain and the immense sense of loss that accompanied losing these body parts, especially to cancer and especially at such a young age.  But inside I longed for a spouse who would hug me and tell me that I was still pretty, still a woman.  I needed someone to tell me that he loved me.  I kept thinking that for years I had weathered all of the ups and downs of our marriage, his deceit, his mood swings and so much more — and all I really wanted were a few kind words and to be hugged.  But I guess some things are just too much to ask for…

So as we drove home the other night and I thought about how stressful the previous 36 hours had been because of his bad temper and his unpredictable mood swings, I looked at the door handle and thought, “I am done with living this way and I want out.”  I wanted out with all of my heart…well, almost all of my heart.

But I couldn’t do it.  Especially when the only place I wanted to run to (other than Hawaii) was my home… to change the locks.  Now it would be just plain silly to jump out of my home-bound car to run home.  Right?

So I am still here…

With the same locks…

With the same husband…

Thinking about what it would be like to be dealing with cancer if I weren’t married to someone who was rooting for the cancer to win instead of me.

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National No Bra Day and Breast Cancer Awareness Month — OR — Please Put That Pink Can of Soup Down & Put Your Bra Back On

National No Bra Day Breast Cancer Awareness

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***10/9/2013:  I have been completely overwhelmed by the number of visitors this post has received in the past few days (over 130,000 at last count!).  I am not sure who first shared it — or who continues to share it — but I want to THANK YOU all for visiting, reading, and sharing it.  I think the realities of breast cancer are so often trivialized and “pinkified” so I am sincerely grateful to everyone who has taken the time to read or share my blog.  I am sorry to say that my story is just one of many, but with your help, we may just be able to do something to change that.  Please feel free to leave me a comment or to share your own story below — or send an email: cancerinmythirties@yahoo.com.   Thank you all. ***

Peter Griffin / Family Guy “What Grinds My Gears” Episode

———

I am not a ranter by any means and I have been pretty quiet about “Pinktober” and what has come to be known as “Pinkwashing” in breast cancer circles, but seeing October 13th advertised as “National No Bra Day” and as a “fun” way to support people with breast cancer has pushed me over the edge.

Are you kidding me?  How on earth could a day where girls and women are encouraged to post and share photos of their braless breasts and to walk around with their nipples poking through their shirts be “supportive” for women who are living with or who have died from breast cancer, or who have managed to ‘complete’ the arduous treatments and disfiguring surgeries required to put them into remission?

I think the answer is simple.  It is not.

Like so many women–and men–who have faced this disease, I have lost my breasts to cancer.  Though I had a terrific surgeon, it was a physically and emotionally disfiguring surgery.

The cancer had gone so deep and was so extensive on my left side that it was at first inoperable.  Even after months of chemo, my surgeon took as much tissue and skin as possible and went deep into my axilla (underarm area).  The cancer had metastasized to my lymph nodes and had invaded them to such a degree that they broke open to allow the cancer cells to go beyond the walls of the nodes.  Because of how invasive the surgery was and of how much nerve damage, etc. resulted, it was not only extremely painful then, but continues to be a source of pain and phantom sensations that affect my entire upper torso even today.

I required over a year of physical therapy just to be able to raise my arms again and I still don’t have full function or range of motion.  And, because of pain, swelling, conspicuous compression sleeves and gloves, I am constantly reminded of the lymphedema that resulted from the surgery and loss of my lymph nodes.  Oh, and the life-threatening infections that forced a couple of hospitalizations and four months of massive doses of antibiotics this summer (almost 2 years after my original surgery), are also a little reminder of some of the things that the bilateral mastectomy and lymph node surgeries have left me with.  And there is so much more…

So the thought of seeing bra-less women flaunting two body parts that I have lost to cancer — more than I already see this on a regular day — does not feel all that supportive.  In fact, it feels quite the opposite.

I think of myself as an open-minded person.  I do my best not to judge others or their beliefs and ideals.  I have a pretty good sense of humor and am usually the first to poke fun at myself.  And I make light of breast cancer and my struggles, treatments and their side effects, lack of breasts, fear of death, etc. fairly frequently.  It is how I cope.  But, given what I have been through, I think I have earned the right to joke and make light of how this terrible disease has affected me.  But if you haven’t been there or taken care of someone who has been there, then you should think twice before you publicize a day that jokes about putting the first body parts we usually lose to this disease “out there” on display even more conspicuously and then labeling it as an activity that helps our ’cause’.

We live in a society that makes a huge hoopla about breast cancer while at the very same time trivializing the seriousness of the disease.  How can we be so contradictory?

While I am beyond thrilled that breast cancer is no longer a taboo issue and that people are talking about it, the commercialism has gotten out of hand.  There is nothing pink and rosy about breast cancer, yet it has been pink-washed to death.  It is a serious disease that kills.

And while I do think we need more awareness and education (about metastatic disease, about how young women CAN develop breast cancer, about how women (young and not so young) DO die from this disease, about the importance of research, etc.), I don’t think we need the kind of awareness that buying a jar of salsa with a pink ribbon on it brings.  While I hardly ever see “awareness” products addressing the topics above, I can’t go anywhere without seeing pink products.  Heck, I just have to look out of my front window to see giant pink garbage totes.  The stores are filled with pink as companies try to make a buck off breast cancer.  If you look carefully at these products, you’ll find that some of them don’t even donate a cent to breast cancer awareness, support, research, etc.  And oftentimes those that do make a very minimal donation — and not always to organizations/programs where the money is well spent. Case in point — during a recent trip to my grocery store’s pink breast cancer section, I found (after reading the small print) that the maximum per item donation to the breast cancer “cause” was $0.35. An abysmal $0.35 for a $25.00 plastic coffee mug!  And, guess what, once that $0.35 reaches “the cause,” a portion of it is lost to overhead, salaries and advertising costs.

One of the most unfortunate issues here is that well-meaning people are willing to buy pink products, even pay a little extra, because they think they are helping to do something to “cure” breast cancer or to provide “hope” to breast cancer patients.  Why is this sad?  Because those dollars spent on pink key chains, pink beer koozies, pink boxes of crackers and pink plastic water bottles could be going to fund research into metastatic disease, better (and less harmful) treatments, the elusive “cure” and, dare I say it, PREVENTION.

My intention is not to offend or to hurt the feelings of anyone who is genuinely trying to help, but I think it is important for you to know the truth.  So please put your bra back on, put down those pink garbage bags (unless you really like pink that much!), that pink “awareness” pepper spray keychain, and that pink breast cancer “awareness” vibrator and dildo (yes, I’m blushing and yes, these are real things that their merchandisers say will “help you raise breast cancer awareness” — though they are shipped discretely in plain, unmarked boxes so no one knows what you purchased) and send a few dollars to an organization that devotes their fundraising dollars to research.  You just have to do a bit of homework or read the labels on those pink items to see where your money is actually going.  [There are pink products out there that do help to fund research, etc. — they seem to be in the vast minority, but they do exist.]

And, if you don’t like homework, here are a few great organizations — there are many others, but these are some of my favorites:

*** Metavivor.org ***:  [A terrific organization…]  From support groups to funding vital research, our programs sustain the power of hope.  Passionately committed patients ourselves, we rally public attention to the urgent needs of the metastatic breast cancer (MBC) community, help patients find strength through support and purpose, and make EVERY dollar count as we work with researchers to regain longevity with quality of life.

*** http://www.standup2cancer.org/ ***:  [Another great one — and it’s not just for breast cancer.  Note that your donation will NOT be BREAST CANCER-specific, but will be directed toward multiple cancers. Since you are reading a breast cancer-specific post I know this may or may not be in line with your philanthropic goals, but if it is, SU2C is an excellent choice.]  “Our mission is to fund collaborative, translational cancer research to bring treatments from the bench to the bedside faster, and save lives now.”  Since Stand Up To Cancer was founded in May 2008, we have granted $161 Million Dollars to ten Dream Teams of scientists and researchers, one international translational research team and 26 high-risk, high-reward Innovative Research Grants.  100% of public funds go directly into research grants. A portion of the funds that are raised from major donations and third-party fundraising go towards administrative expenses and overhead.

Other Important Organizations:

***A number of people diagnosed in my age bracket have emailed or commented about how Young Survival Coalition (YSC) has helped them.  This organization is the premier global organization dedicated to the critical issues unique to young women who are diagnosed with breast cancer. Founded in 1998, YSC’s mission is to serve the roughly 13,000 under 40 (often an under-recognized contingent of the breast cancer population) who are diagnosed with breast cancer each year.

YSC helps these young women by providing support and health information to see them from diagnosis to long-term survivorship. The nonprofit tackles issues specific to this population, like early menopause, effects on fertility, more aggressive cancers and lower survival rates. From YSC, “compared to older women, young women generally face more aggressive cancers and lower survival rates. More and more evidence tells us that breast cancer before age 40 differs biologically from the cancer faced by older women.”  Thus, the organization also advocates for increased studies on young women with breast cancer. YSC offers resources, connections and outreach so women feel supported, empowered and hopeful.

***If you are interested in making a difference for through an organization specifically targeting Inflammatory Breast Cancer, I recommend http://www.theibcnetwork.org/:  Inflammatory Breast Cancer (IBC) is a rare and highly fatal form of breast cancer that is not typically discovered by mammogram and often occurs prior to standard breast cancer screening age recommendations. Our all volunteer board is focused on education and funding research for this 200 year old orphaned form of breast cancer. No Lump Still Cancer.

…or consider a group that helps cancer patients and their families cope with their illness.  For example:

CancerIsAJerk.org  — This is a charity my dear friend jme set up to help families touched by cancer.  You can make a financial donation  or  if you’d like to have a tangible something to wear to show your support, you can purchase a “Cancer Is a Jerk” t-shirts with all proceeds going to help actual families touched by cancer.  You can also contact jme through the charity if you’d like to sell shirts as a fundraiser with all proceeds going to benefit cancer family applicants in general OR designate a specific family of your choosing.

And don’t underestimate the value of local organizations.  My local Breast Cancer Coalition is a perfect example.  The Breast Cancer Coalition of Rochester‘s mission is to make the eradication of breast cancer a priority through education and advocacy; to empower women and men to participate fully in decisions relating to breast cancer; to provide support to those coping with a breast cancer diagnosis; and to focus research into the causes, prevention, treatment and cure of breast cancer.

Also local for me is The Karen Carson Crane Foundation.  Founded by Karen’s siblings after she died of breast cancer, the mission of the Karen Carson Crane Foundation (“the KCC Foundation”) is to provide support and financial assistance for individuals affected by breast cancer; to encourage breast cancer patients to have the strength, courage and passion to overcome their disease; to support local organizations that assist breast cancer patients; and to donate a portion of its fundraising dollars to organizations that research and promote alternative cancer treatment methods.  

There are many other great organizations and groups out there — these are just a few.

And if you can’t help with a financial donation, consider volunteering your time or talents.  Perhaps to local cancer patients — bringing a meal or knitting a chemo cap or scarf, or sending a cozy blanket are examples of ways to show your support.   I remember when a small box of craft supplies was left on my doorstep when I was first going through chemo — what a gift that was — my kids loved it and it kept them occupied for a little while when I was really ill!  Or consider volunteering (or providing non-financial support) at/for a local cancer center, hospital oncology floor, or for an organization that helps cancer patients and/or their families. [If you need help with finding a place to volunteer, etc in your area, please email me with your town/city name & I will do my best to help…].  There are many ways to show your support that don’t require $$.

And, of course, don’t forget to go for your regular mammograms and to feel your breasts when you can (and report any changes to your doctor) because doing these things IS important.  It — what I can loosely call a self-breast exam (but which was really just washing myself in the shower) — is how I found my own lumps, about 17 years before I was due for my first mammogram (according to the recommended screening age back in 2009).  If I had ignored my lumps and waited for that first screening mammogram, I can safely say I would have been long dead!  So please pay attention to your body and your breasts.  While the vast majority of lumps are benign, I still believe it’s always best to bring your breast changes to the attention of your doctor.  Thanks for reading…

I will leave you with a picture that I believe is my best advertisement for Breast Cancer Awareness Month:

Me -- 5 Days post bilateral mastectomy and complete ALND (Axillary Lymph Node Dissection)
Me — 5 Days post bilateral mastectomy and complete ALND (Axillary Lymph Node Dissection)

Side note:  The ACTUAL National No Bra Day is July 9th annually.  Someone had the great idea to do a braless day during October — Breast Cancer Awareness Month — to support “the cause.”  Adding insult to injury, the day they chose — October 13th — is actually the one day out of the whole year designated for Metastatic Breast Cancer Awareness.  Sadly, I’ve seen far more No Bra Day awareness advertising circulating around the web than I have Metastatic Breast Cancer Awareness Day info.

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And P.S. — because it seems that clarification is needed for some — this post is NOT about a woman’s choice to wear a bra or not wear a bra.  Those comments miss the boat completely.  And I do not need a lecture on the merits of going braless.  Wear a bra.  Don’t wear a bra.  That is your choice.  Just don’t choose to not wear a bra on one specific day and call it an effort to benefit breast cancer patients or to advance breast cancer research.  Raising BREAST AWARENESS you may be, but you are not “supporting BREAST CANCER” by leaving your bra at home.

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 10/10/13:  This post was written a year ago on National No Bra Day.  Please visit my latest Breast Cancer Awareness posts here (National No Bra Day: An Update) and here (Is It Really “All About the Titties” on National No Bra Day (a.k.a. Metastatic Breast Cancer Awareness Day?). And thank you all for your support and amazing comments!

4 Months…

So I saw my oncologist today for my 6-week check-up.  I was expecting it to be a nice little ‘here’s what’s happening’ and ‘goodbye & congrats’ session.  It pretty much was. I went through a rundown of my symptoms and she asked me questions and updated my profile in her computer.

Then she told me she had seen my abnormal EEG results and asked what my neurologist was doing as a ‘next step’.  I told her about the MRI I had at the end of last week and said that I had an appointment with the neurologist tomorrow and that I expected to discuss the results with her then.  Since my oncologist and neurologist share a hospital and a computer system, she was able to pull up a 1 sentence blurb taken from the full report.

It mentioned a brain lesion.  But I guess that could mean a few different things — and that it doesn’t necessarily mean that it’s a brain met (metastasis).  But thinking of this in the context of the abnormal EEG, my mind can’t help but “go there.”  For more detail, I’ll have to wait for tomorrow’s appointment.  I kind of wish she hadn’t brought it up.  But I’m sure she wanted to see what the preliminary report had to say at least.  You see, she was headed out on maternity leave after my appointment today and I won’t see her again until February.

So we finished the appointment with a quick exam and a discussion of who will be covering me and what her plans are for me during her leave.

I hugged her, told her (honestly) how happy I was for her, and handed her a card and a wrapped box containing a lovely little pink dress, a dress I had actually purchased for the baby girl I was hoping to have before all of this began.  Of course I did not share this last bit of information with her.  Nor did I not mention that she had become a part of my routine and that I am grateful for her role in killing my cancer.  And I certainly did not tell her that I will miss her while she was away.

And I did not mention the “what if” that crept into my consciousness as we hugged and I realized that I would not be seeing her for 1/3 of a year.  But I knew it was there.

I thought about a couple of women I had come to “know” through their posts about breast cancer.  They both learned that their cancers had returned a couple of months ago.  But they were still hopeful.

And now they are gone.  They died.  A few months ago they thought they were doing fine.  And mere weeks later, they are gone.

I wish I could say these lovely women were the first people I had heard of this happening to.  The first people who have had their cancers return or progress this quickly or aggressively.  But, sadly, I cannot.  Not at all.  You just never know with this disease.

I try not to think about the possibility of this happening in the context of my own life/death.  And most of the time I don’t.

But I am only human.  And at times like these, at times when I hear of sudden losses and the fragility of life hits me like a slap in the face, or when I can’t help but wonder if maybe that nagging pain or that headache that won’t go away is “something,” it is difficult not to let these thoughts creep in in the quiet space of a dark night.

As I walked out to schedule my next appointment, not with the oncologist I had come to trust and rely upon, but with one of her colleagues, I thought about how much could change in the 4 months she would be gone.

Of course a great deal will be changing for her.  She will be bringing a new life into this world, expanding her family, and doing and experiencing all of the things that are associated with that.

And I… Well, I will be trying not to die.

Happy Waving Guy

Easter Cupcakes 2012

Coming home from an oncology appointment one day, we were driving down the busy main street of our town and I noticed a man walking by the road.  He kept a good pace and carried his head high.  He was tall and slender with a shiny bald head, but the first thing I noticed about him was his smile.  He bore a gigantic grin, one reminiscent of Alice’s Cheshire cat, and he waved to us as we drove past.  My return wave was a reflex.  I looked at my hand and could feel a smile pulling up the corners of my mouth.  Here I was waving at this strange man who was obviously a crackpot.  And I’m sure that I, waving and smiling with my shiny bald chemo head, looked like a bit of a crackpot, too.

The weeks went by, and after each appointment or long day of chemo, I looked for “Happy Waving Guy” (as I affectionately named him).  And I almost always saw him.  I began to wonder who this man was and if he spent his days walking back and forth down the road cheering up the passersby.  You see, it wasn’t just me he waved at.  It was EVERYONE.  Every car that passed along the busy road would get a smile and a wave.  And, to my surprise, it wasn’t just me who returned the wave.  It appeared that most everyone returned his wave or honked their horn or did something of that sort.

It came to be that I expected to see him after a crappy day at the Cancer Center  or the hospital.  I expected his smile and happy wave to give me a little lift.  So one day when I was terribly sick and felt like I couldn’t make it through one more treatment, we pulled into the parking lot “Happy Waving Guy” was walking by and I shouted to him.  I remember thinking, “Who’s the nutcase now?”  But I didn’t care.  I wanted to meet this man and to thank him.

He was so pleased that we stopped and that I was grateful for what he was doing.  He was out there every day, walking and waving and smiling, and trying to bring a bit of happiness to everyone who passed.  He wasn’t crazy, he wasn’t a crackpot.  He was a humanitarian.  He said that not everyone was as fond of his activity, but that the people who were made it worthwhile.

It has been 2 years now since I first met “Happy Waving Guy” a.k.a. Bill.  He continues to elicit smiles from many of the people who drive by him on his daily walks.  We keep in touch via email and he has shared a copy of his book with me and has even invited us into his home.

I believe it was one of my kids — they don’t hold anything back! — who asked him if he was always happy.  While I don’t recall his words exactly, his response went something to the tune of ‘if you act like you are happy, you may just get there’.  I know I’m paraphrasing and I may have it all wrong, but there is a lesson in there.  If you exude positive energy, some of it is bound to stick — or to come back to you, at least.

I try my best to live by this philosophy and recently read the post of another cancer patient who is trying to do the same, so I know I’m not alone in my desire to be happy despite the pitfalls of life on this slippery slope.  As I await the results of the MRI I just had, I am trying to be positive and have vowed to continue to do my best to see the joy in each day, come what may.  Of course having a positive attitude doesn’t always help or work, and some days I think the theory is a load of crap.  But most days I think it is certainly worth it to try.  At the very least, it doesn’t usually make things worse — and some days that’s good enough!

Cancer and Cockroaches

So I have been having these dizzy/fainting spells and an episode or two that looked like seizures.  My neurologist wanted to do an MRI when I saw her last week, but I told her I didn’t think it was necessary.  So she opted for an EEG.

I had the EEG early Thursday morning.  It was pretty simple.  They scrubbed areas of my scalp and affixed leads.  Then they wrapped my head up with a gauze bandage to ensure that the leads wouldn’t move during the test.

I lay down in a hospital bed while they tested me with a strobe light, had me do a hyperventilation test, and then waited as I tried to fall asleep.

When I was finished, one of the technicians tried to wipe the blue gel out of my hair.  She told me that I could go to clean it out in the bathroom since my husband and son (home from school because he had a stomach bug) were coming to pick me up and we were going on to other appointments.  I opted to just skip the freshening up and walked out to the car to find my hair sticking up in places, with a visible sticky blue gel helping to create a familiar look for me–“the disheveled patient”.

The person conducting the EEG wished me good luck with everything and said the results would be forwarded to my neurologist next week and that she would likely call me after that.

I assumed the test results would be fine–and that I wouldn’t hear from my doctor until my next appointment with her in a couple of weeks.

But when I saw the hospital’s number in the Caller ID and then heard her message on Friday, I wondered how she had gotten the results so quickly.  She said that she had my results and that she would try to call again.  So I called her office, let her know that I would be home for the next hour (before heading to the cardiologist).  They didn’t expect her to get back to me that day since it was already late in the afternoon, so when she called back 10 minutes later, I was a bit concerned–though the bigger part of me still thought she would say everything was fine.

When the neurologist told me they found an abnormality on my EEG, it didn’t sink in right away.  She didn’t go into too much detail, but she said that they found “something” in my left temporal lobe.  Especially given my cancer history, it is troubling.  The concern is that the cancer has spread to my brain.  She said that she would order an MRI with contrast–and that I couldn’t object this time.

If this is metastasis to the brain, I will be so ticked off.  I made a deal with the cancer in the beginning.  Stay away from the brain and… well, I forget what the cancer was supposed to get out of the deal.  This arrangement reminded me of when I moved into my dorm room during my first semester at the University.  It was a school filled with many well-off kids (though I was there solely because of scholarships and students loans), so you can imagine my shock when I saw a couple of cockroaches emerge from my roommate’s television during that first week.  It wasn’t long before they took hold in the room.  I was dismayed, but made a “deal” with them.  “You can have the rest of the room, but stay off my bed and my desk,” I pleaded with them.

Things were going okay as I waited out the days until the exterminator was supposed to come to our dorm room.  Everything changed when I came home after a late night at the chemistry lab.  There they were on my desk, even on the phone, and darting through my photo frames.  It was ridiculous, but I was angry because the roaches had violated our agreement.  I called and requested that the exterminator come sooner and when that didn’t work, I actually moved to a new room where I never saw another roach.

I wish it were that simple with cancer…  That I could just move down the hall and never have to worry about it again…  Alas, it is not that simple.

Spread to the brain has been one of my biggest fears since my diagnosis 2 1/2 years ago.  I watched my grandmother die a painful death from brain cancer when I was a little girl and the experience scarred me for life.  She was one of the most special people in the world to me and she died when I was just 9 — a year older than my twin boys.

One of my biggest fears since that traumatic period in my youth was that I, too, would develop brain cancer and suffer the same fate as my grandmother.  Of course, if this is actually a tumor, it is likely a spread of my breast cancer and not a tumor that originated in the brain like my grandmother’s was presumed to be.  But the effects would be essentially the same, especially given it’s location in the left temporal lobe.  If my children have to watch me suffer in the way that my grandmother did, I think I would have to rethink my plan of fighting until the end.  I don’t think I could leave them with with the same images and experiences that have haunted me my entire life–because I know how it will end.

I hope it’s just a mistake and I hope I won’t have to worry about that…

 

*If you like this post, please visit this link & click “Boost” on my page. Thank you.  http://www.breastcancerblogs.org/blog/24423/cancer-in-my-thirties *

April 13, 2010 a.m. – Today is the Day

I have my appointment at the breast center this morning.

My sons’ birthdays are tomorrow.  (They are twins.)  I am thinking about a dear friend who died 2 days before the boys’ first birthdays, so five years ago yesterday.  She treated me as a daughter throughout my awkward younger years and until her death.  Her actual daughter was one of my two very best friends, so she often shuffled us from here to there and picked us up from school when we needed a ride.  This was almost every day for a time because her daughter and I ‘stayed after’ for numerous clubs and activities and sometimes just for a chance encounter with the boy we both liked.  [I am smiling as I recall this last bit and how silly we were!]  She never complained about having me in her home or minivan so often.  She said she enjoyed talking to me.  And I felt the same way.  She became close friends with my mother—they were the same age and both warmhearted gardening Englishwomen with gardening English mothers who were displaced from their homelands.  We remained very close.  I even lived with her for a year when I left college.  Oddly enough, the first house I bought was a side-split almost identical to hers–and just around the corner from her–and was a place where she planted some of the lovely lilies she bred.

She was diagnosed with breast cancer in her 40’s.  She was forever changed by it.  And not in the good way people sometimes talk about, but in a way that makes my heart ache for her.  It was painful and traumatic.  And at her young age, isolating, I’m sure.

We should have been celebrating together at my sons’ first birthday party as planned that Saturday five years ago.  Instead, I was at her funeral.

I glanced at some of the silk ribbons hanging on the closet door on my way downstairs this morning.  She had earned the awards for her prize-winning rabbits.  I could hear myself asking her to help me handle whatever happened today.

April 9, 2010—Life is Like a Box of Chocolate Cupcakes

My appointment is all set.  I have mixed emotions about it, but probably not for the reasons you are thinking.  The top and bottom of it?  I am quite fortunate to be seeing a doctor who founded an internationally recognized breast care center.  But I would be lying if I said I wasn’t a bit concerned because I will be seeing the founder of an internationally recognized breast care center.

There are a number of doctors in the center, so why her?  Maybe I have misheard, but as I understand it, this world-renowned pioneer in the field of breast cancer detection doesn’t see just any random patient (unless there is “news” to deliver) because her schedule does not allow for it.  So I find my mind wandering as I ponder why she would see little old—well, “fairly young” me—someone with no family history or risk factors for breast cancer, and someone with NO health insurance.  Would I be paired with ‘the best of the best’ if this wasn’t something serious?  Or maybe she will be reviewing my mammogram because they need someone who can say with absolute certainty that what I’m dealing with is something benign?

It is hard to keep my mind from wandering to a dark place of ‘what-ifs’.  But I am “blessed” with the ability to second guess myself and to downplay the significance of things concerning my health, etc., so the ‘what-ifs’ quickly melt into thoughts about how everything is fine, how I will be wasting this important doctor’s time, and how the clinic I went to has gone to so much trouble to make arrangements with Cancer Services and with the breast care center—and how all of this is for naught.  I suppose that since this dismissal of my own symptoms will lead to less worrying and dwelling, I’ve found an upside to having lower than average self-esteem.  Ha-ha.

I will do my best to be patient.  I will be seeing her first thing on Tuesday morning.  Today is Friday…  It will be a long weekend, but my boys will keep me busy as we gear up for their birthdays on Wednesday.  They have some fun ideas for cakes they would like, so I’ll probably do a trial run to see what I can come up with for their party next weekend…

In the meantime, I’ll leave you with a photo or two of some chocolate cupcakes I made for a fundraiser.  You can’t tell, but they were supersized (and very chocolaty).  I’ll admit that not all of them made it into the boxes!  Thanks for reading…

April 7, 2010 — Pink Bunny Cupcakes & Good Samaritans

This Sunday we celebrated Easter.  I’ve often heard it referred to as a time of renewal.  I think I will remember Easter this year as a time when my faith in human beings was renewed.

On Monday I called to the breast center where I had the mammogram a few years ago and told them that I was having trouble getting a referral for my breast lumps.  My call was transferred until I reached a woman who told me that I could go to a local health clinic that helps uninsured and underinsured people receive basic medical care.  For just $5 – $15, I could receive a manual breast exam.  I immediately called and scheduled the appointment.

I just returned home after a whirlwind visit to the health clinic.  First off, I have to say that it is staffed by remarkable people.  They squeezed me in at the end of the day, so I was the only patient when I arrived.  With no wait, I was brought back to be examined.  It wasn’t long before I was told that I would need a diagnostic appointment at a breast center.

Sensing my concern, the nurse told me that they would find a way to help me with the fees.  Fortunately, there are programs to help women in need receive free mammograms.  Unfortunately, these programs don’t exist—at least in our area—for women under 40.

They told me not to worry, though, and said they would do what they could to help me get taken care of.  The rest of my appointment was spent signing papers and waiting as they assembled and faxed paperwork to a program—Cancer Services (formerly the Women’s Health Partnership)—that pays for diagnostic exams for uninsured men and women with (suspected?) breast, cervical or prostate cancer.  They said that because of my age, they would need to complete extra paperwork, affidavit(s), etc. and then get them sent over right away to make a plea for help with the diagnostic appointment.

It was after 5 p.m. and they were working collectively and without complaint to coordinate everything for me.  How surprising it was not to hear “call back tomorrow” or “we’re closed” or “we can’t help you”.  I didn’t even have to ask and here they were doing their best to rally for me.  So refreshing and heartwarming, especially after the past week.

When I left, they hugged me and said they would do their best to help get me in to the breast care center where I had been seen for my past lumps.  So now I wait…  But I am waiting with a renewed faith in the medical community—or at least in the volunteer medical community.

[Because I love baking and decorating cakes and cupcakes, I thought I would leave you with some photos of the cupcakes I brought to Easter at my sister’s on Sunday…  Thanks for reading…]

April 3, 2010 – They Don’t Have a Frequent Flier Card for This

K & the Easter eggs

Companies and business with “loyalty programs” seem to abound these days.  Purchase 11 large pizzas and get your 12th for free.  Pay full price for 10 haircuts and get the 11th free.  Fill up your gas tank 5 times and get a discount off your 6th fill-up.  Fly x amount of miles and earn a free airline ticket.  Buy 12 donuts and get your 13th free.  These businesses are encouraging loyalty and rewarding you for your repeat business.  The concept makes a great deal of sense—both the business and the patron benefit.  I wish my gynecologist’s office worked the same way.

I’ve been looking for a way to get a screening at least partially covered.  I started with my OB/Gyn’s office.  They said they would charge me full price for an office visit and a breast exam.  I explained my insurance situation and explained that I had already had a manual breast exam less than a year ago and that this was for the same lumps, now larger.  It didn’t help.

So I asked if there was any way I could speak with my doctor and maybe just get a referral to have a mammogram or an ultrasound—I figured this would at least eliminate one charge.  She told me that I could not and said that I would have to come in for a breast exam before I could get a referral.  She  added that the facility where I would have those services performed would charge me a separate fee for their exam.

I assume that if I go in and spend a couple hundred dollars, I could hear the “You’re too young” explanation again, but judging by how much the lumps and my breast itself have grown, I believe I would be sent to the breast center.  Then I would also have the burden of paying for that (much more expensive) visit.  When I asked the office’s gatekeeper if she knew of any resources for obtaining assistance with diagnostic visits, she said there weren’t any the office was aware of.  I told her, ‘thanks anyway’ and said that I would pass on the office visit and on getting the manual breast exam because paying full price out of pocket would be too much for me.  She said okay and added a “Good luck to you.”  That was the end of the conversation.

I hung up, feeling defeated.  Now, it is not that I expected them to give me a free office visit.  I understand that the doctors need to be paid and that the facility has an electricity bill.  But I have been a loyal patient for a long time.  I had good insurance before, so it’s likely that my doctor and her staff have been fairly compensated for any services performed on me in the past.  I have been here many times over the years for my regular check-ups and for issues I’ve had along the way—like multiple bouts with mastitis while I was nursing.  And I was seen there and in the hospital quite a few times during my twin pregnancy—at least until the doctors collectively decided I was too ‘high risk’ to continue with their group and moved me over to the perinatology group at the hospital.  But after my babies were born, it was their office I faithfully returned to.

I have shared moments of joy and sadness, hugs and tears with my doctor.  I encouraged all of the women in my family to change gynecologists and move over to this practice, for goodness sakes!  I have been a very loyal patient.  Shouldn’t that count for something?  Though I don’t expect a free visit, I thought the office might offer some kind of discount or just refer me directly to the breast imaging center to save the expense of an office visit and manual breast exam.

After regrouping, I began calling organizations like Planned Parenthood.  They were friendly enough, but no one was able to assist me with getting a mammogram or ultrasound at a discounted rate.  Or with getting the referral I need so the breast center will see me.  There ARE programs out there to help, but not for someone “as young as me.”

I will still pursue this, but it is Saturday now, so it will have to wait until Monday.

In the meantime, today we are headed to an Easter egg hunt or two with my boys and with my sister, brother-in-law, and my niece and nephew.  This should be a nice distraction.  My little ones are so excited to spend the morning with their cousins.  I guess they aren’t exactly little ones anymore.  They are 5, so they aren’t that young, but since they are only in the 2nd and 3rd percentile for height and weight, they are still physically small.  But something tells me that even if they were 6’3”, they would still be my little boys.

I am looking forward to a special day with the kids.  But in the back of my mind I am concerned.  What will I do if this really is something?  And by something, I mean “the big C.”  Having no insurance makes you feel like a leper of sorts.  A leper with cancer, now who is going to take that on?  I’m trying not to get ahead of myself.  These are likely just benign lumps—statistically, they should be “nothing”, so I am probably okay.

But what if I’m not?  They don’t have a frequent flier card for this.  If my own doctor won’t work with me when I have a true medical problem, why would a doctor who doesn’t know me?