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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/

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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 *

Blending Past & Present

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My Nanna (who died of brain cancer when I was 9) and me…

When I started this blog, I had a lofty plan.  I imagined that I would write every day, telling the story of my cancer journey in chronological order, beginning shortly before diagnosis and continuing through today.  It was going well, though I didn’t get very far before infections and hospitalizations this summer took precedence.  After another major event (that I will share in the future) developed, I just couldn’t find the energy to post…

Creating this blog has been something I hoped to do from the start of my cancer experience, so I’ve decided to make it a priority.  To accomplish this goal, I feel the need to revamp it so there are no longer giant gaps between posts.  I’ve decided to abandon my original plan and will no longer feel tethered to the idea that I need to tell the story chronologically.  Though I will continue to share the journey from the beginning, I don’t want to ignore what is happening today.  Because I am still here to tell the story myself, I will include elements from my early days as a cancer patient, but I will also incorporate current stories about this life-altering process and the ongoing struggles and joys that are a part of my life as a cancer patient/survivor in my thirties.

I am excited about this new format and I’m looking forward to melding the past with the present.  I hope you will join me for what I guarantee will be an eventful tale.  Thank you…

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?

April 1, 2010 – Only One Pink Line

My breast has been leaking fluid—now enough to wet the inside of my bra cup.  At first I wasn’t too alarmed, but the amount is increasing.  I did buy three more pregnancy tests from the dollar store, just to be sure.  I took the final test this morning.  When I saw only one pink line again, my heart sank.

If I’m not pregnant, there is definitely something wrong.  The fluid is translucent and pale yellow/brown.  If I squeeze my breast a little, more emerges.  There seems to be no end to it.  This can’t be normal.  Could it be an infection?  I know it’s not.  I’ve had plenty of antibiotics for bronchitis and sinus infections in the past year and they haven’t affected the breast at all.  And I have been feeling really ill and fatigued for months.  I’ve lost almost 15 pounds without changing my eating habits.  This can’t be good.

I’m scared now, but I haven’t told anyone what is going on.  Why haven’t I cared enough about myself to get this checked out again?  If this were happening to anyone else, I would say, “WTF (and I don’t swear… well, not that much anyway…), it is not nothing.  You are NOT too young.  Get yourself to a doctor.  I’ll take you right now.  The money is not important.”  Why haven’t I done this for myself?

Hopefully it is nothing and I’ll feel silly when this is all over with.

But I know it’s not nothing…