Why Don't Infertility and Menopause Count as Forms of Birth Control?

Welcome to another edition of the Question of the Week.

Let me start by saying that I need to vent because I am feeling really baffled, frustrated and sad.

You see, I am once again getting a mixed message from my health care providers.  On the one hand, they have diagnosed me with infertility and, more recently, the start of early menopause.  On the other hand, they are insisting that I use two forms of birth control while undergoing Hepatitis C treatment.

Now I get it that the drugs I will be taking are horribly toxic to a fetus and can cause serious birth defects.  But come on!  If I can't get pregnant under normal circumstances because my ovaries have been destroyed by the chemotherapy I received 24 years ago to treat the blood cancer leukemia, what makes them think that Hep C treatment is going to magically change that?  I mean, if G-o-d was going to intervene and help me conceive a child, don't you think G-o-d would have the good sense to do so under more ideal circumstances?

Thing is, this isn't the first time I have been baffled by what I perceive to be a contradictory message.  Nope, I have been advised to continue using birth control several times since being diagnosed with infertility.  Which makes me wonder Do I not understand what the word infertile means?  Because, silly me, I keep thinking it means I will never ever get pregnant or be a birth mother because my ovaries are fried.  Right?

But let's say for a moment that I am wrong.  Let's say they're right and hypothetically I could get pregnant...  On second thought, forget it.  I know they are wrong because I already tested this hypothesis out, and sure enough, I could not get pregnant after months, no, years of trying.  Heck, my ovaries are so burnt to a crisp that I couldn't even get a fertility monitor to predict when I was ovulating because, well, I wasn't.

All of this double talk is really dredging up a lot of old, painful feelings.  The hardest thing I have ever had to accept is that I can't fulfill my life-long dream of giving birth to a child.  And every time I have to revisit this subject, it is just like pouring salt into old wounds.

O.K., so enough about me.  Don't worry, I'll be fine...eventually. And yes, I will comply with their request to use two forms of birth control during Hep C treatment, even though I know I will not be getting pregnant during this lifetime.

Let me hear from you now.  Have you ever been told contradictory information about your chronic illnesses?  How did it make you feel?  What did you do to deal with the situation?  Did the fact that this happened to you change how you felt about your health care providers?

Leave a comment below or head over to the Oh My Aches and Pains Facebook page to share your story.

Related articles

• Me and Hep C: How I Became HCV+ (ohmyachesandpains.info)
• Me and Hep C: Am I Getting Cold Feet? (ohmyachesandpains.info)
• Book Review: Free from Hepatitis C by Lucinda Porter, RN (ohmyachesandpains.info)

My "Bust an Infertility Myth" Blog Post

Today I am participating in the Bust an Infertility Myth Blog Challenge, a National Infertility Awareness Week® blogging event sponsored by RESOLVE: The National Infertility Association.

As I've mentioned in my blog post about the Livestrong Young Adult Alliance, one of the issues facing childhood and young adult cancer survivors is infertility. The radiation and chemotherapy treatments that save so many lives unfortunately deprive many cancer survivors the opportunity to become biological parents. I know this because I am one of many cancer survivors who is unable to have children.

When I signed a consent form for my cancer treatment, it clearly stated that infertility was a common side effects of the treatment I was choosing. As much as I wanted to start a family one day, in that moment I needed to focus on treating a cancer that had a 67% chance of killing me. Back in 1988, there were no fertility preserving options available to me. Even if there were, my cancer had progressed to the point where it needed to be treated immediately and could not wait for me to preserve some of my eggs.

After I completed chemotherapy in August of 1988, I experienced premature menopause. That led to a series of consultations with several different gynecologists to talk about approaches to managing this situation. An unexpected part of those consultations was listening to advice about how I might be able to become pregnant in the future if I so desired.

Unfortunately for me, getting pregnant was the furthest thing in my mind at that time. For starters, I had been dumped by my boyfriend a month after my cancer diagnosis and didn't think that dating was going to be part of my immediate future. I was also dealing with some body image issues that were the result of the aftermath of my cancer treatment and subsequent premature menopause. Plus having just finished chemotherapy, I couldn't quite imagine wanting to subject myself to more medical procedures anytime in the near future.

When I finally found a gynecologist I felt comfortable with, I started on hormone replacement therapy (HRT). I remained on HRT for about six years until something strange happened on the day of the Northridge earthquake, January 17, 1994. In response to the earthquake, I got my period. In and of itself, that wouldn't have been very remarkable, except for the fact that I was in the wrong phase of my HRT to be getting my period. Which led to the discovery that my cycles had returned on their own and after a few months I discontinued HRT.

Which brings me to the infertility myth I am busting in this blog post: just because you are having regular periods doesn't mean you can get pregnant.

Despite full disclosure of my cancer treatment history to my gynecologist, she told me when my period returned that I could get pregnant. Because infertility has been one of the hardest things for me to accept in my life post-cancer, I grasped onto this hope and let myself believe that what she was saying to me could be true.

I became reacquainted with the truth when I was finally ready to start family building with my husband and found myself unable to get pregnant after months and months of trying. I am sure that the infertility doctors I consulted thought it was a bit strange that I was so upset with their diagnosis in light of the information I shared with them about my cancer history and treatment.

It wasn't that I was upset about being told that I was infertile; I was upset because I let myself believe for so many years that I was not.

Today I am choosing a life without children. I still wish that I could have children, however I feel that in my current situation, dealing with several chronic and disabling medical problems, it is impossible for me to be a "good enough" mother at this time. It is my hope that one day my health will get better so my husband and I can pursue adoption as our family building option.

Until then, we offer our home to a collection of homeless pets seeking "furever" homes and lavish them with the love and attention we are able to offer.

To learn more about the real truths about infertility, visit RESOLVE today.

Click here learn more about National Infertility Awareness Week®.

Related articles

• In Focus: Livestrong Young Adult Alliance (ohmyachesandpains.info)
• Matthew Zachary: Childhood Cancer's Forgotten Moral Imperative (huffingtonpost.com)
• Break Cancer: My Young Adult Cancer Experience (ohmyachesandpains.info)

In Focus: Livestrong Young Adult Alliance

From time to time, I write about a lot of different nonprofit organizations here at Oh My Aches and Pains! The truth is, I have received support from many different organizations through my experiences with cancer, diabetes, hepatitis C, fibromyalgia and chronic pain. Taking the time to write about these different organizations gives me the opportunity to pay them back, raise awareness about their programs and services and invite you to get involved with them.

Today I want to talk about a committee within an organization you've all heard of: The Lance Armstrong Foundation, more commonly known as Livestrong. Specifically, I want to highlight the work of the Livestrong Young Adult Alliance.

Did you know that every year almost 70,000 young adults between the ages of 15 and 40 are diagnosed with cancer?

Did you also know that the survival rate for this age group has remained the same over the past three decades?

Boosting cancer survival rates and improving the quality of life for young adults with cancer are the dual purposes behind the work of the Livestrong Young Adult Alliance. The alliance is comprised of a coalition of organizations, like the National Collegiate Cancer Foundation, National Coalition for Cancer Survivorship and the I'm Too Young for This! Cancer Foundation, that are working to solve this problem and promote young adult cancer research. Knowing that unity is strength, together they strive to raise awareness of this problem and discover effective solutions.


Some of the conditions thought to contribute to this problem are:

• delays in diagnosis
• lack of health insurance coverage
• overlooked early warning signs of cancer
• lack of participation in cancer clinical trials

In addition, young adult cancer patients face unique challenges:

• long-term effects from cancer treatments that need to be addressed over their lifetime
• obstacles in reentering school or the workforce after treatment
• health insurance coverage issues
• infertility resulting from cancer treatments

How do I know so much about these issues?

In January, 1988 at the age of 22 I was diagnosed with leukemia, a blood cancer. After my diagnosis I faced many of the issues I have listed above, only at that time I didn't have the support and services of Livestrong to help me. It wasn't until 2006, when the UCLA-Livestrong Survivorship Center of Excellence opened its doors that I started getting help addressing all the late and long-term effects from my cancer treatment.

I wholeheartedly support the efforts of the Livestrong Young Adult Alliance and the work of The Lance Armstrong Foundation. They have been making a huge difference in my life for the past five years. I can honestly say that they are deserving of your support and your donations of time, effort and money on their behalf.

During National Young Adult Cancer Awareness Week earlier this month, April 3-9, I've learned about Break Cancer, a countrywide young adult cancer awareness project sponsored by the Livestrong Young Adult Alliance in partnership with URDB World Records. Inspired by Heidi Adams, who set a goal to receive the "Most Hugs Against Cancer" and set a world record at 575 hugs, I am setting out to break a record for the "Most Comments Received on a Cancer-Related Blog Posts in 24 Hours" on Friday, April 22 from 12 midnight to 11:59 p.m. Pacific Daylight Time. In that post, I will be writing about my experience as a young adult cancer patient.

I invite you to help me and the Livestrong Young Adult Alliance raise awareness about the issues facing young adults diagnosed with cancer. Please come back on April 22 and add your comment to my Break Cancer blog post.

World Hepatitis Day 2010: More About How I Became HCV+ (#thisishep)

August 1988: So there I was, once again, in the Emergency Room at UCLA Medical Center, only this time I was turning yellow.

My bout with acute hepatitis progressed rather quickly from the time I noticed tinges of yellow around the corners of my eyes in San Diego. Twenty-four hours later, there in the ER, the whites of my eyes turned completely yellow and my skin was changing color too. The effect was similar to the fake orange color of a spray-on tan, only in a dark shade of yellow.

By the time I got to the ER, I was extremely nauseous, vomiting, unable to eat, extremely fatigued and experiencing pain over my rib cage on the right side. The most troubling symptom for my doctors was my high fever. I waited patiently in the ER as they evaluated me, drew blood, called for a consult and found a bed for me on the oncology floor. It comforted me to know that at least I would be cared for by the doctors and nurses I came to know during my cancer treatment.

The worst part for me about having acute hepatitis was the nausea and vomiting. I literally threw up more with acute hepatitis than I did the entire duration of my cancer treatment. It was a good thing they started an IV, because for a while I could not keep anything down. Between the fevers and antiemetic medication, I spent most of the first few days in the hospital sleeping. By the time I felt ready to attempt to eat food again, I could only tolerate a pureed diet.

While hospitalized, I experienced my first liver biopsy. Honestly, I didn't think it was half as bad as all the bone marrow biopsies I endured. The liver doctor numbed up my right side and stuck a long needle in between my ribs as I laid very still on my hospital bed. From my vantage point, I really didn't see the needle and I felt very little pain with the procedure. Afterward, I was instructed to lay flat on my back with a sand bag over my liver for several hours, time which I spent napping. The purpose of the biopsy was to assess liver damage, but I think because I was so sick the results came back atypical, showing I had chronic liver disease.

After about a week, the medical staff felt that my fevers were under control and I could be discharged. I went back to my parents' home still needing to eat a puree diet. My dad was traveling for work at the time, so I begged my mother to go to the store to pick up some baby food and popsicles. When she refused, I called a friend and he came over and took me to the store. Later that evening, I started spiking a fever again. I placed a call to my oncologist and he instructed me to go back to the ER. My mother was furious at me. During the entire ride to the hospital, she ranted about how I shouldn't have gone to the grocery store and how inconvenienced she was having to drive me to the ER. The minute the doctors decided to readmit me, she left and went back home.**

In total, I spent somewhere between two to two and a half weeks in the hospital because of acute non-A, non-B viral hepatitis.

By the time I was discharged for the second time, I was living with horribly debilitating fatigue. It took me several years to very slowly and completely recover. My plans to return to classes at UCLA to complete my Bachelor's degree in the Fall of 1988 got pushed out to Winter quarter 1989. Instead of going back to college full time, I needed to adjust my schedule and take classes part-time. It took five quarters instead of three to complete my Bachelors degree, but what matters most to me is that I received my degree in June 1990.

I spent that first Thanksgiving after the one-two punches of cancer treatment and acute hepatitis helping to prepare dinner from a seated position at the kitchen table. I bought a copy of Jane Brody's Good Food Book and I was learning how to cook a liver friendly diet full of vegetables and fruits. I remember I made her mashed potato stuffing for the turkey that year and was roundly criticized by my family for that choice!

Back in 1988 they called what I had non-A, non-B hepatitis because they hadn't yet identified the virus that causes Hepatitis C. When the Hepatitis C test came out in 1992, my doctor ordered the test for me. It was not a surprise when the results came back. I was HCV positive.

Perhaps the only good thing that came out of this ordeal was knowing that I had hepatitis. This knowledge made it clear to me that I needed to take good care of myself and I was advised by my doctor to avoid drinking alcoholic beverages. Believe me, there were times I wished I could join my friends trying the latest drink sensation--like cosmos in the 1990s. But I chose to abstain because I never want to be as sick as I was back when I had acute hepatitis. Turns out, avoiding alcohol was very good advice. Research shows that moderate to heavy drinking can increase the progression of Hepatitis C infection resulting in more severe liver damage, cirrhosis and an increased risk for liver cancer (read more here.)

I have known for 22 years that I have been living with Hepatitis C. I am one of an estimated 3.2 million Americans living with it each and every day. If it hadn't been for my severe bout of acute hepatitis, which is a very rare occurrence, I might be one of the many people who don't know they are infected. Yes, I am one of the one in twelve people worldwide living with viral hepatitis. And tomorrow on World Hepatitis Day, May 19, 2010, I am going to ask you the question, "Are you number 12 too?"

**ADDENDUM: I can look back on that episode with my mother and laugh now. In contrast, it makes all the things my dad did for me during that time, like taking me to the ER and hospital multiple times, seem almost heroic. She didn't know how to be caring, but thankfully my dad did. She passed in 1999 from colon cancer and I chose to care and be there for her. I know there is some irony there and a lesson too: we all do the best we can with the cards life deals us.

World Hepatitis Day 2010: How I Became HCV+ (#thisishep)

As I gear up for World Hepatitis Day 2010 which is this upcoming Wednesday, May 19th, I want to share my story of how I became Hepatitis C positive (HCV+)...

It was January 1988 and I have just been diagnosed with acute promyelocytic leukemia. After months of not feeling quite right after a viral infection and my doctors playing a 'let's wait and see' game, I've made it to the hospital in pretty bad shape, with a white blood cell count of .9 and severely immune compromised. I knew before the doctors told me that things were very serious and didn't flinch when I was told I was in for the fight of my life. Without a sibling match, the treatment plan went from a bone marrow transplant to four courses of chemotherapy.

I soon learned how leukemia treatment worked. Each time I entered the hospital for a month-long course of treatment, they gave me enough chemotherapy to wipe out my bone marrow but preserve my stem cells. Without my bone marrow to generate new cells, my doctors relied on multiple blood transfusions to get me through the weeks when I could not make my own red blood cells, platelets and clotting factors. Soon I lost count of the number of blood transfusions I received.

Years later, when I reread my cancer treatment consent forms, I saw the mention of the risk of non-A, non-B hepatitis from blood transfusions. However, in the moment, that risk was not enough to stop me from signing the forms and agreeing to treatment. Back then, my attention became firmly focused on how I was winning my fight with leukemia with the completion of each course of chemotherapy. By August 1988, the fight concluded. I was in remission, cancer free and done with my treatments.

Yet on a celebratory trip to San Diego a week later, I started feeling poorly. I cut short a night of dancing with my friends to head back to our hotel room so I could lie down. I don't know what possessed me to exam my face in the bathroom mirror when I entered the room, but as I stared at myself I saw that my eyes had a yellowish tinge to them. I asked my friends to confirm what I saw, but they didn't notice the subtle change. I spent a restless night with nausea and stomach pain, feeling anxious to get home. I endured the return trip lying down in the back seat of my friend's car, sipping a bottle of Gatorade and trying to enjoy the end of a trip that seemed to be headed in the wrong direction.

Once home, I called my oncologist and was instructed to immediately go to the Emergency Room. It was there that I learn I was experiencing the symptoms of acute hepatitis as they prepared to admit me back into the hospital...

TO BE CONTINUED

Vote to Change How Cancer Is Treated

Image by hoodiefanatic via Flickr

Yesterday I was checking my Facebook feed when I saw this post from a friend:

Develop an alternative cancer treatment that has no side effects | Pepsi Refresh Everything

www.refresheverything.com

Vote for the most refreshing ideas to win Pepsi Refresh Project grants for Health

Being a 22 year cancer survivor, of course I had to check this out.

Because I have lived so long after my leukemia diagnosis in 1988, I know first hand that surviving cancer is really just half the battle. Think about it like this: having cancer is like climbing Mount Everest. It is a grueling struggle to get to the top of the mountain, which is akin to cancer treatment. Once you get to the top, the view is exhilarating and awe-inspiring, like finding out your cancer is in remission. But then, you have to make it all the way back down the mountain, which is just as treacherous and dangerous as getting to the top. The journey back down the mountain describes life for many cancer survivors who are living with late and long term effects from their cancer treatment.

So what are cancer treatment late and long term effects? In my case, the chemotherapy drugs I received damaged my autonomic nervous system, caused infertility and put me at risk for getting leukemia again and having heart problems. In addition, the numerous blood transfusions I received in 1988 gave me Hepatitis C. The Children's Oncology Group has put together a comprehensive list of cancer treatment late and long term effects based on the type of cancer and the treatment received, which you can read by clicking here: Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers.

But let's be honest. The odds of me surviving my cancer were only 33% in 1988. It is a miracle I am still alive. Back then, getting the upper hand on cancer was the goal of treatment and no one really worried about late and long term effects because so few people lived for decades past their cancer diagnosis.

I am a member of the first generation of cancer survivors who beat cancer and are here to tell you about it.

Now that treating and curing cancer is a more achievable goal, I say it is time to work on eliminating cancer treatment late and long term effects. I want to make sure that the next generation of cancer survivors does not have to live with this double edged sword illness of illness and disability from cancer and cancer treatments. So when I found this opportunity for all of you to help me achieve this goal, well, you know I had to write about it.

The Kanzius Cancer Research Foundation is working to develop a non-invasive cancer treatment that kills cancer cells and spares healthy cells. Based on the work of John Kanzius, radio wave technology has been found to be effective in targeting and destroying pancreatic, liver, breast, prostate, colon, lung and leukemic cancers. The foundation anticipates FDA approval this year to build a larger device capable of treating humans and beginning pre-clinical testing. Based on this time line, they anticipate beginning Phase 1 human clinical trials in 2012.

Your vote at the Pepsi Refresh Project can help the Kanzius Cancer Research Foundation obtain $250,000 in needed funding. With the money, the foundation plans to hire two full-time experts, a molecular biologist and a physicist, to support ongoing research and clinical trials. They will also use the funds to support ongoing global fundraising efforts to support their ongoing research.

Please help me improve the health of cancer survivors by voting for the Kanzius Cancer Research Foundation at the Pepsi Refresh Project. You can cast your vote daily through April 30th. The foundation needs to place 1st or 2nd in its funding category in order to receive funds and it is currently in 3rd place. Let's help them move up in the rankings and achieve their goal!

Don't Panic! I'm Getting a Grip...

Image via Wikipedia

I freaked out just a little bit today.

I got an unexpected call from my neurologist's office asking me to call back and schedule an appointment with the doctor so she could go over the results on my SPECT brain scan done yesterday. Now granted, I planned to call and schedule a follow-up appointment today as I was told my doctor would have the results by Friday, next week Monday the latest. But what is up with my doctor calling me? I always call them.

Then I got worried. Early results? Is that a bad thing? Did they find something?

Since I found myself already on the road, I decided to just go there. I went down the road of worry. I had myself a big, whopping catastrophizing session. I just let go and let every horrible thought about my scan results enter my mind. I allowed myself a few, short minutes to let all the worries out.

I won't freak you out with the details. But it worked. After my catastrophizing session, I found myself able to calm down and get refocused.

I reminded myself that it was my questions that prompted my doctor to order the SPECT scan. I wondered out loud at my last appointment if my brain was damaged from the chemotherapy I received 22 years ago. After all, I've been diagnosed with dysautonomia secondary to my cancer treatment. Plus I have fibromyalgia, a pain disorder thought to be linked to the brain's inability to process pain signals correctly. So she sent me for this scan that can tell her if my brain is damaged and where, based on brain blood flow.

Then I reminded myself of this article that I found when I researched what a SPECT scan was. Researchers in France found that persons living with fibromyalgia have abnormally increased blood flow in the part of the brain that processes pain intensity and abnormally low blood flow in the area of the brain that processes the emotional response to pain. The conclusion of the study stated that fibromyalgia may not be such an invisible illness after all.

So if there is something the radiologist found on my scan, chances are the results support the fact that I really do have fibromyalgia and it is all in my brain. This may not be a bad thing. It may be the validation and respect my real illness deserves.

So I'll let you know after my appointment, next Thursday, March 18. That's the earliest date I could get so Robert can come with me and provide support as needed. A week seems like a long time to wait. So until then, I'll be re-reading this post, taking deep breaths, focusing on positive thoughts and staying in the moment.

Doing My Best to Deal With a Bittersweet Anniversary

I was in a funky mood all yesterday and I finally figured out why. Yesterday was the 22nd anniversary of my diagnosis with acute promyelocytic leukemia in 1988 when I was 22 years old. I also realized that this is a tipping point year: I have lived exactly 22 years without cancer and 22 year affected by cancer and late and long-term effects from my cancer and its treatment.

I also recognize that this anniversary means that I have been given the gift of an additional 22 years of life. I had a 33% chance of survival back in 1988, which means I had a 67% chance of not making it. It still boggles my mind to think of my survival in these terms; I still can't believe that I got that lucky.

Since my cancer diagnosis, I have lived a life of both gratitude and grief. Not surprisingly, this anniversary always feels bittersweet to me, especially so now that I really understand my late and long term effects from cancer treatment: infertility, early menopause, dysautonomia and chronic Hepatitis C infection. As much as I strive each day to live a life focused on the good stuff life has to offer me, today I can't help but shed a few tears over the losses I've suffered because I had cancer.

I've noticed lately on Facebook that people are asking their friends to post the following message as their status:

Put ♥ this ♥ on ♥ your ♥ status ♥ if ♥ you ♥ know ♥ someone ♥ who ♥ has ♥ or ♥ had ♥ cancer! ♥ All I wish for in 2010 is a CURE! ♥ I pray for the cure of cancer. ♥ 93% WON'T Copy and Paste this, will YOU 4 just one hour? ♥ please do it !!!!! thx.

When this message came to me, of course I posted it as my status. I do pray for a cure for cancer, but a very specific one. One that doesn't leave the survivor at risk for developing long term and late effects from the treatment. One that does result in the survivor living the rest of their life with chronic illness. One that doesn't take away hopes and dreams to have a child, be 100% healthy and live life to the absolute fullest, without limitations and restrictions.

On second thought, I think my efforts are better served if I pray for a way to prevent cancer altogether. That way no one will ever have to live with all the uncertainty of whether or not they will go into remission, whether or not they will be cured and whether or not treatment long term and late effects will rob them of their good health and longevity. It is only through cancer prevention that late and long term effects like secondary cancers, serious and life-threatening heart problems and transfusion-acquired infections will stop disabling and killing cancer survivors.

On this anniversary, I admit that every time I hear about another person being diagnosed with cancer, my feelings get stirred up and for a nanosecond I am transported back to January 13, 1988. I deal with these feelings by reaching out to the newly diagnosed and offering support and a listening ear. I also feel a moment of incredible guilt every time I hear of someone losing their battle with cancer: survivor guilt. I am trying very hard to let go of this guilt and trust that there is some divine reasoning behind why bad things happen to good people.

I share all these thoughts with you today because I want to show you that this is the way I deal with my bittersweet anniversary. I don't fight to repress my feelings, I feel them. Sure yesterday didn't feel very good, but tomorrow I might feel differently. I acknowledge that anniversaries are powerful experiences, whether it's remembering the loss of a loved one or the birth of a child. It is human nature to reflect on these past experiences on anniversaries, to relive the moments and ponder their meaning.

Learning to go with the flow by feeling my feelings and then letting them go--this is a big part of learning how to live my best life despite chronic illness.

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• Study points way to development of drugs for deadly childhood leukemia (scienceblog.com)
• Man builds machine to treat his own leukemia (makezine.com)
• #ASH09 Report: Acute Myeloid Leukemia (pharmastrategyblog.com)
• Scientists Find New Leukemia Gene Risk Factors (nlm.nih.gov)

Not the Best Gift for Christmas

Image by m kasahara via Flickr

One of my friend posted a question as her Facebook status during the holiday season: What was the best present you ever received for Christmas? I tried to remember the gifts that I had received over the years and I drew a blank. I'm going to say that it is because of brain fog, or maybe chemo brain, that I have such difficulty remembering what I have gotten for Christmas. It can't be because I have never gotten an awesome Christmas present...

Oh wait, a stray memory popped up and I remembering getting a Weeble's pirate ship that was a shared gift among me and my siblings. Can that really be the most memorable present I got for Christmas?

Well this year, Santa brought me something that I have been waiting for for several years now. I just got confirmation of it today from my doctor. The change I've been expecting is finally here. Yes, Santa brought me menopause for Christmas.

I'm not surprised. In fact, as I think about it, this turns out to be regifting. I went through early menopause once before after I finished my chemotherapy treatments back in 1988. Turns out, this chemically induced menopause was a temporary situation, which I discovered after, of all things, the Northridge Earthquake of 1994. (Gotta laugh at the ways God communicates with me.) My gynecologist at the time thought this meant that everything was back to normal, which it was not. A second opinion in 2004 set me straight and predicted a return visit by 2007.

It's ironic that a few days after Christmas I woke up one morning drenched in sweat and I immediately thought I had H1N1 swine flu. I took my temperature and it was normal, 98.6 degrees Fahrenheit. Which is when I thought, 'This has got to be menopause.' Then I realized that hot flashes, night sweats and other unmentionable symptoms were going to be part of all my tomorrows. Joy!

Once again, I come face-to-face with yet another legacy of my cancer treatment: early menopause. As much as I try to remember that chemotherapy = no cancer = longer life span, being a cancer survivor, or rather suffering from long-term and late effects of cancer treatment, sometimes just sucks. How naive was I at 22 to think that after I finished treatment I would be returning to a normal life?

I'm not sad that menopause is here. I was much more upset about the fact that chemotherapy took away my ability to have my own biological children and that chronic illness is now taking away my chance to family build in other ways. I do feel a bit concerned about how this new development is going to affect my fibromyalgia and chronic fatigue symptoms. It's already a problem that I don't have the energy to shower as often as I would like, now that I am having hot flashes several times a day. That and I am going to drive my hubby crazy with "I'm hot, turn on the fan/air conditioner." and "I'm cold, turn on the heat." every few hours.

Santa would give me a gift I can't return or exchange.

(Like I said, gotta laugh at the ways God communicates with me.)

Related articles by Zemanta

• Why Do Women Experience Menopause? (neatorama.com)
• Guide to Natural Menopause Survival (findmeacure.com)
• Protecting the Heart at Menopause (online.wsj.com)
• Watch for Depression During and After Menopause (nlm.nih.gov)

How Roche Made Hepatitis C More Visible #iiwk09

Back in June of 2005, Roche Pharmaceuticals started a new campaign to raise awareness about Hepatitis CHCV) and encourage those with HCV to seek treatment. This campaign consisted of several posters like the one featured at the top of this post. As you can see, the poster raised the question, "If Hep C was attacking your face instead of your liver, you'd do something about it." Right?


Well I guess, in theory, if Hepatitis C disfigured my face I'd be trying to figure out how to make my face look better. But the assumption that it would lead me to choose HCV treatment might be a faulty one. After all, an easier option would be to just invest in some really good makeup or receive some kind of dermatolgical treatment to cover up the symptoms.

You see, I have genotype 1b and treating genotypes 1a and 1b is especially difficult. The treatment success rate for genotype 1 is about 50% --- a coin toss. Current treatment is a combination of interferon and ribaviran, which I did try back in 2007 when directed by two different rheumatologist to seek treatment as they felt my chronic HCV infection was fueling my fibromyalgia. After three weeks, I wound up in the hospital September 11, 2007. I stopped the treatment because of side-effects; side effects made severe due to impairment of my immune system and my dysautonomia which are late effects from my leukemia treatment in 1988.


I hope and pray every day that the next generation of Hepatitis C treatments, protease inhibitors, hurry up and get here. Similar to the drugs used to combat HIV, protease inhibitors hold the promise of a more tolerable and less debilitating HCV treatment. Early results from several clinical trials look very promising, but according to the hepatology team at Cedars-Sinai Medical Center, the FDA has asked that these new medications be tried in combination before final approval. That means that pharmaceutical companies like Schering, Vertex, Pharmasett and Intermune need to work together to make antiviral HCV treatment a reality.


I am encouraged by the news at the HCV Advocate website that the very first STAT-C multi-drug targeted antiviral combination clinical trial began in April 2009. Click here to read more.


Do I want to treat my chronic HCV infection? Yes! But until the treatment outcomes and options improve, I wait anxiously for HCV antivirals that might be more leukemia survivor friendly.

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• Hepatitis C: No overall difference in sustained viral response in most widely used treatments (scienceblog.com)
• SNPwatch: More Evidence That Genetic Variations are Important for Hepatitis C Infection and Treatment (spittoon.23andme.com)
• The hepatitis healing power of blueberry leaves (biosingularity.wordpress.com)

My Routine: Working on Letting Go of Some Old Routines

Image by _william via Flickr

I admit that my response was to feel guilty when I heard that two of my high school classmates had died in the month of June 2009 from breast cancer. This guilt is a 21 year routine with a fancy name: survivor's guilt.

Truth be told, 21 years is a long time to feel guilty...

I think it started after my cancer treatment, when I read a letter my doctor had given my parents for the medical insurance company. My doctor wrote that I had only a 33% chance of surviving after my cancer diagnosis. I was shocked. Apparently no one thought to inform me of this fact at the time I was diagnosed with acute promyelocytic leukemia, which is very strange, given that I was 22 at the time of my diagnosis, an adult by society's standards. After being told I had cancer and would be admitted to the hospital that same day, I do remember my parents being taken aside by the doctors for a discussion behind a closed door without me. In retrospect, I believe the doctors informed my parents and they all chose not to tell me.

Why is this significant 21 years later?

At that moment I discovered just how close I was to being in the 67%, that is, not alive at that moment, I felt overwhelmed realizing that I had been so close to death. So remarkable and terrifying, this knowledge after-the-fact filled me with a fear of dying that I carry with me to this day. The information literally freaked me out. Then I got really angry that no one had told me this. After all, it was my right to know how grave my situation was. I'm not saying I would have done anything differently, I just feel I had been robbed of the opportunity to feel that fear in the appropriate moment and process it during my cancer treatment experience.

Fear after the fact is a strange beast indeed. I began to question why I was alive and why some of the young adult cancer patients I met and befriended were not. After all, there were no obvious differences between us. I did not see anything different, special or exceptional about myself that would entitle me to be a survivor over my friends. We all deserved a chance to keep living. I could not make sense of it; I wanted desperately to make sense of it.

As for my fear of dying, there may be hope for me yet. I recently discovered this quote:

"We can help those afraid of dying..
...but how do you help those afraid of living?"
--Plaidypus

Now that I live with chronic illness---chronic pain, chronic fatigue, dysautonomia, Hepatitis C infection and Type 2 diabetes, all late effects and complications of my cancer treatment 21 years ago---I wonder what my friends who didn't survive cancer would think. Would they have wanted to survive their cancers too only to go on to deal with a whole range of long-term and late effects related to the cancer treatment they received? Living with chronic illness can be a real ordeal and there are days when, for a few microseconds, I regard being a cancer survivor as not that much of a blessing. What I have gained in extra years of life has been paid for by losses, unrealized dreams, worries, struggles and disappointments. Thank goodness I am flexible in the face of change, otherwise I would be in a million little pieces by now...

My friend Julie, who lost her battle with colon cancer in 1989, used to say that cancer was like the sword of Damocles: you never knew when it would swing the other way and chop off another piece. Watching from her place in heaven, I think she would also say that life as a cancer survivor is an equally precarious situation in which chance delicately dictates whether further tragedy will strike.

Perhaps now I can let go of my survivor's guilt, knowing that cancer survivorship, like cancer, is also a double edged sword.

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My Routine: Priority Health Maintenance Appointments Not To Be Missed

Image by ms.Tea via Flickr

PLEASE NOTE: I devote my post today to my high school classmates Megan Garvey and Petra Gemmingen. I found out yesterday that my classmates both passed away from breast cancer during the month of June 2009. May they rest in peace.

You could argue that I take more than my fair share of medical care and you might be right. There are, however, several routine health appointments that I keep that are vital to my health. I'm talking about my preventive health care appointments.

As someone who lives with chronic illness and has dealt with cancer at age 22, I can tell you with certainty that having health problems is not fun. That's why I have faithfully kept my appointments for annual gynecological check-ups as well as an annual routine physical to check for things like blood pressure problems, high cholesterol and other health concerns. Since turning 40, I promptly added an annual mammogram to this list.

I used to think that since I already had cancer in 1988, I probably wasn't going to get it again. Since I got connected with the UCLA Livestrong Survivorship Center of Excellence in 2007, I've learned that I have risk factors from my cancer treatment for secondary cancers, heart problems and other health concerns. Through my participation in ACOR's Long Term Cancer Survivors List, I've met several long term cancer survivors like myself who have multiple health problems as I do.

This past April Linda Zame, the founder of the ACOR Long Term Cancer Survivors List group, died from cancer. Her cancer however was not related to her treatment for Hodgkin's Disease in the 1970s at age 21. You see, she skipped her routine colonscopy and by the time she started having symptoms her cancer was diagnosed at stage 4. Always turning misfortune into a teachable moment, she asked all of us in the group not to neglect getting our colonoscopies and encouraged participants to schedule the procedure as a birthday present to her. After talking to my doctor, I will add colonoscopy to the list at age 45.

The reason I will start my colon cancer screenings at 45 is because my mother died from colon cancer in 1999 at the age of 61. Like Linda, she skipped her routine colonoscopy at age 55 and was diagnosed with stage 4 colon cancer at age 60. She survived for 11 months after her diagnosis.

I know that many people avoid routine preventive health care for a variety of reasons. What they don't realize when they put off their appointments or pass them up all together is that they are giving up a chance for early disease detection. Early detection is the key to successful treatment of many health problems. Starting to treat early is important not just in the case of cancer, but for conditions like diabetes, heart disease, HIV/AIDS and many others. The longer you live with an undiagnosed health problem, the greater the potential for that condition to do damage to your body and often when damage is done it is irreversible. Click on the image to the right to learn more about the preventative health care guidelines that apply to you and your children.

So join me in honoring my classmates Megan and Petra. If you are a women 40 and over, I challenge you in the next week to schedule your annual mammogram if you haven't already. If you know a women over 40, encourage her to do the same. And if you are a man, please make an appointment for an annual routine physical in the next week. Most of all, do it for yourself and your health.

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Selena Writes: If I Only Had a Heart...

Today has been a weird day. It started with my tweet:

@SelenaMKI: Woke up today feeling like the Tin Man: can't move, can't reach oil can, under the influence of poppies and not able to get to the Wizard!

See I spent a few moments trying to be witty and descriptive at the same time and suddenly the Tin Man comparison came to my mind. I remembered the scene were Dorothy first comes across the Tin Man in the forest, all rusted and frozen, unable to reach his oil can, unable to move. Unfortunately for me, even with a little "oil" I still feel rusty and move with a lot of "creaking" each and every day. This is even more true right now that I am experiencing a flare-up of my fibromyalgia symptoms; akin to the Tin Man trapped outside in the rain and starting to become frozen in place.

See the more I explain this, the more this metaphor just seems to work for my situation.

Then the kicker: I am waiting for Robert in Costco this evening as he searches for these cheese filled cheese crackers that he is craving. I decide to turn idle time into productive time by checking the voice mail messages on my cellphone. And there it is, another Tin Man reference for the day. This one is about my heart.

When I had the special MRI study back at the end of March to diagnose thoracic outlet syndrome, there was an incidental finding that the left ventricle of my heart might be enlarged. I placed a call last week to the oncologist at the UCLA Livestrong Survivorship Clinic asking her to review the MRI study to see if there was anything that needed follow-up. Sure enough, I got a call today saying she and my cardiologist reviewed the MRI and want me to have an echocardiogram and then a follow-up appointment with the cardiologist.

Truth be told, I am a little freaked out. I know a lot of long-term cancer survivors who have cardiac late effects, but was feeling lucky because, so far, no damage to my heart has been found. So I really am off to see the Wizard (the doctor), the Wonderful Wizard of OZ (UCLA Medical Center).

My last tweet of the day:

@SelenaMKI If I only had a heart... Just checked my voicemail ... new concern about my heart based on March MRI. Need to go for echo & f/u with cardio.