Warriors in Pink: My Tribute to a Fallen Warrior #FordWIP / @WarriorsinPink

As you may already know,  I am a cancer survivor.  I've now lived 24 years beyond my cancer diagnosis.

Finding out you have cancer, going through treatment, beating cancer and being blessed with a second chance to continue on with your life are things you never, ever forget.

You also never forget the other people with cancer you meet along your journey.

So during this month of breast cancer awareness, as I watched the Ford Warrior’s in Pink; ‘Bang the Drum: Living Out Loud in the Face of Breast Cancer’ documentary, my thoughts naturally turned to my beautiful friend Jade.




Jade: A Model of Strength and Courage

I met Jade in the Fall of 1988 when I started attending a support group for young adults with cancer.  She had breast cancer, just like two other women in the group, Katie and Benita.

When we met she was near the end of her treatment and things were going well for her.  The visible signs of her cancer faded once her treatment was over.  Her jet black hair grew back, the color returned to her cheeks and she opted for breast reconstruction surgery.

I'm pretty sure if we hadn't of had cancer at the same time, we probably would have never met.  Jade was about ten years older than me, recently divorced and working in the fashion industry. I was a 22 year old college drop-out who was living at home. Despite our different backgrounds, we became friends.

With the others, she welcomed me to the group.  She shared with us how her cancer experience spurred her on to transform her life.  She bloomed before our eyes as she went out and built that better life she wanted, surrounding herself with love, beauty, health and comfort.  She inspired me to do the same.

In my life, I have met a few people I wished I could be and Jade was absolutely one of those people. 

What drew me to Jade was her confidence, courage, empathy and encouragement.  Putting her life together after cancer wasn't easy, but she did it with such aplomb.  And when I hit a few bumps in the road as I was putting my life back together too, she reached out and helped me get through them.

Unfortunately her breast cancer came back nine months later.  I did everything I could to be there for her as she faced more rounds of treatment.  Tragically, she lost her battle on December 6, 1990 at the age of 35.  I was one of many mourner at her funeral who were all grief-stricken over the death of someone so young and so full of life and vitality who was taken away from us much too soon. 

I know she is just one of many fallen breast cancer warriors.  She may have lost her battle, but she lives on in my heart forever.

Today my grief has been replaced with hope, hope that her cancer experience has in some small way helped researchers and doctors improve the treatments and the care they provide to those battling breast cancer receive today.

Jade was a fashionista, long before anyone had coined the term, and I think she would have loved this Circle of Hope scarf from the Ford Warriors in Pink collection which you can find here: http://www.warriorsinpink.ford.com/.  I'm buying one to help fund the continuing fight against breast cancer and I'm wearing it as a tribute to my friend and breast cancer survivor Jade.

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This October, Ford Warriors in Pink® has launched its first ever produced documentary, “Bang the Drum: Living Out Loud in the Face of Breast Cancer.” The film honors 11 female and male breast cancer survivors who have demonstrated strength and courage in their battle with its “Models of Courage” program.

2012 marks Ford Motor Company’s 18th year of support for the breast cancer cause. In that time, Ford has dedicated more than $115 million to the breast cancer cause.

You too can get involved in this tremendously worthy program! When you buy Ford Warriors in Pink apparel at fordcares.com, 100 percent of the net proceeds go directly to support breast cancer awareness all year long.

To keep connected, be sure to check out Ford Warriors in Pink on Facebook and follow @WarriorsinPink on Twitter.

This is a sponsored post written by me on behalf of Ford Warriors in Pink. The opinions and text are all mine.

Getting Through the Hard Part of Hepatitis C Treatment

The Uphill Part of the Journey

A weekly injection.  12 10 pills taken on a daily basis.  A treatment I give to myself in the comfort of my home.

Hepatitis C treatment might look easy on paper, but make no mistake, this is a real-life home version of chemotherapy.  Yes, I said chemotherapy, as in cancer treatment.  And yes, I am correctly using this word per the broader definition of chemotherapy that most people have forgotten about:

treatment of an ailment by chemicals, especially by killing micro-organisms.

In addition, my home Hep C chemotherapy causes some of the same side effect that cancer treatment does, like: suppression of red and white blood cells production, increased susceptibility to infections, fatigue, weakness, changes in taste and smell, changes in appetite, nausea, vomiting and diarrhea, fever and chills and hair thinning.  (For the complete list of side effect, head over the the HCV Advocate website.)

Ribavirin: The Red Blood Cell Destroyer

Truth is, I have been experiencing, at one time or another, all of the side effects I have mentioned in the paragraph above.  Thankfully, they have mostly been mild to moderate and manageable.  That is until I was confronted by the red demon anemia...

My pink "girl power" ribavirin pills are a powerful but non-specific antiviral drug.  This drug also suppresses bone marrow production of red blood cells; one of its most common side effects is something called hemolytic anemia.  Ribavirin destroys existing red blood cells and impairs the production of new red blood cells in the bone marrow to take their place.

Unfortunately for me, this kind of anemia cannot be treated by taking iron supplements or eating iron-rich foods, since the problem is not my body's ability to make red blood cells due to a lack of the necessary building blocks.

In three weeks, my hemoglobin, the protein molecule in red blood cells that carries oxygen to the cells in my body, has dropped from 13.5 to 8.5 gm/dl, a 37% decrease.  As a result, I have been experiencing shortness of breath, cold hands and feet, increased heart palpitations and devastating amounts of fatigue.  Because the drop in my hemoglobin has occurred rather rapidly, I have experienced significant anemia-related symptoms quite quickly.

More than anything else, the resulting decrease in my blood volume has made my Postural Orthostatic Tachycardia Syndrome (POTS) symptoms horribly worse.  I have been closer to passing out when I go from sitting to standing than I ever have been prior to Hep C treatment.  My pulse rate averages between 100 to 110 range at rest, my blood pressure has dropped as low as 100/66 and there are whole stretches of time where I feel so unwell I can barely move around the house.  Sometimes crawling seems like a better option than walking! 

But I was prepared for this to happen.  I called my neurologist at the Mayo Clinic and he told me that anemia and the resulting drop in blood volume would make my POTS worse.  He prescribed a steroid medication called Florinef to counteract the effects of the anemia, a medication that my liver specialist finally agreed to letting me take on March 12th when we learned my hemoglobin dropped from 13.5 to 10.5 gm/dl during the first two weeks of treatment.

Taking this medication isn't without some risk, especially if I get an infection and my immune system is compromised (more about this next week when I write about Interferon: The White Blood Cell Destroyer.)  It isn't a prefect solution, but it does make it easier to move around the house and attend a medical appointment...

Getting Serious About Side Effect Management

So I was faced with my first serious conversation about treating serious treatment-related complications this past Monday.  The topic of the day was all about anemia.

Some of the first words out of the nurse practitioner's mouth were "blood transfusion" followed by cancer clinic, which happens to be where Hep C patients are sent for outpatient blood transfusions.  And the cancer clinic she mentioned?  Why it was the same exact one where I was seen 24 years ago and diagnosed with leukemia.

However after the doctor entered the room, "dose reduction" of the ribavirin from six to four pills a day was the course of action prescribed.  Luckily for me, I had already read about ribavirin dose reduction and how researchers have discovered that Hep C treatment-related anemia actually predicted a better response to treatment. So when my doctor suggested it, I was prepared to hear and accept his recommendation.

Beside dose reduction and blood transfusions, a third option is using an inject-able drug called erythropoietin to stimulate my bone marrow to make more red blood cells.  There is some controversy about using this drug because of black box warning issued by the FDA in 2007.  Frankly, I feel better about the dose reduction option over the use of erythropoietin, but would use this new medication if faced with the discontinuation of Hep C treatment because of anemia.

I left my appointment on Monday with a follow-up lab slip to check on the status of my anemia over this weekend.  I began the dose reduction of the ribavirin right away too--as soon as I got out of my appointment it was time to take my 3 PM medications.

Because of the anemia, going to my doctor's appointment felt like running the Los Angeles Marathon--literally!  I was so completely exhausted that I slept for 3 hours once I got home just to recover.  Thank goodness my husband drives me to my appointments, because I am so debilitated right now that there is no way I could get anywhere on my own.


While my body says the does reduction is helping, the truth is I am not out of the woods just yet.  My blood counts need to be closely monitored and further refinements to my treatment may be in order, including any of the three anemia treatment options I have mentioned above.

Trudging Through the Hard Part

So you see, the uphill part of my journey has begun.  This is the part where when the going gets tough, the tough (a.k.a. me) get going.  This is also where I hope the footprints on the beach go from two pairs to one, as someone sees I need some extra help, reaches over and carries me for a little while.

PS  This is also where I need you, more than ever, to support me anyway you can.

Want to be a member of Team Selena? 
Support me during the remaining 168 138 days
of my Hepatitis C treatment!  

Learn how here.

Do You Know More Than Your Doctor?

Welcome to another edition of the Question of the Week.


As I am getting ready to start Hepatitis C (HCV) treatment, I've been running across some pretty interesting pieces of information that I think will make my treatment experience more successful. This information has come to me courtesy of the websites, Facebook groups, listserves and folks on Twitter I subscribe to or follow who review and report on medical research and medical news.   And I find myself feeling awfully grateful towards them for bringing these things to my attention.

With So Much Information, Can Your Doctor Keep Up? 

That said, I can't help but feel some disappointment that my doctors aren't the ones sharing this information with me.  But I guess their busy schedules don't leave them with enough time to keep up with their medical journal reading.  Or maybe it is the fact that, with communication advances like the Internet, there is just so much more information being shared from all over the world that my doctors just can't keep up.  Either way, it sort of leaves me in the awkward position of knowing more about new research findings than my doctors.

So today I want to:

• share a recent discovery, 
• talk about where to go to find illness and treatment-related information and 
• ask if you too know more than your doctor.

My Discovery About Vitamin D and HCV

Several years ago, I was diagnosed with a low Vitamin D level by my endocrinologist. Since then, I have been taking a Vitamin D supplement which has helped me get my Vitamin D level back into the normal range.  Along the way, I have found that I am getting sick from colds, flus and other bugs a lot less and, when I do get sick, the symptoms of those illnesses are much less intense.

Today I was alerted by a HCV group I belong to on Facebook about a research study on HCV and vitamin D.  About 84% of the HCV+ subjects in this study had a vitamin D deficiency.  The researchers gave vitamin D supplements to these patient who were all undergoing HCV treatment.  They found that boosting vitamin D levels back into the normal range (32 ng/mL) improved a patient's chances of getting a sustained virological response (SVR) to treatment from 42% to 86%.  In addition, only 8% of patients taking vitamin D supplements relapsed after treatment compared to 36% of patients with low vitamin D levels who were not taking a vitamin D supplement.

That sounds pretty impressive to me. So I'm taking a copy of this research article to my next appointment and discussing it with my hepatologist.  If he agrees with the findings, I am going to request that he monitor my Vitamin D level closely during treatment.

Finding the Information That is Out There

I know this kind of information is out there for other illnesses and conditions too.

In fact, I just read a book about cancer treatment (that I will be reviewing later in the week) that talks about using medications and supplements to synergistically enhanced the effectiveness of conventional cancer treatments.  According to the author, this "cocktail approach" to treatment has produced some pretty amazing results.

If you live with fibromyalgia, myalgic encepholopathy, chronic fatigue syndrome or multiple chemical sensitivities, a group called Co-Cure compiles this kind of information for you from a wide variety of reputable sources.  Visit their website and check out the research updates and reading room pages.  You can also subscribe to updates via email by going to the list operations page.

Besides books and trusted medical websites, another place to search is Pub Med.  Pub Med is the U.S. National Library of Medicine MEDLINE service that contains more that 21 million citations for biomedical literature.  Check out their Quick Start guide for video tutorials, FAQs and links to learn more about searching for information on Pub Med.

Sharing the Information with Your Doctor

Once you have the information, it's time to talk with your healthcare provider. You'll need their help and medical expertise to discern if these new medications and treatment approaches are right for you and your specific situation.  Be sure to take a copy of the article with you to share with your doctor.

I think it is a real litmus test of your working relationship with your doctor when you share information with them.  So don't let fear stop you.  You'll gain valuable information about your doctor's commitment to your good health and well being by sharing information with them.

When I have received a less than supportive response, I've taken it as a sign that it was time to find a better doctor.

So do you know more than your doctor?  What trusted resources do you use to keep on top of new medical information? Do you feel comfortable sharing information with your doctor?  Do you have any advice for others about sharing information with health care providers?

Please share your response on the Oh My Aches and Pains! Facebook page or below in the comments section.

Related articles

• Hepatitis C: The Facts (ohmyachesandpains.info)
• Bits and Pieces: Overwhelmed with Health Care at Day 12 (ohmyachesandpains.info)
• Why I've Decided to Treat My Hepatitis C Infection Now (ohmyachesandpains.info)

Here's to a World with Less Cancer & More Birthdays

I can't write this post without shedding a few tears.

I cry because I am a living example of what it means to have less cancer and more birthdays: 24 more birthdays to be exact!

It's hard to believe it's been over 23 years since I heard the words, "You have leukemia." It's hard to believe it's been 18 years since I passed the 5 year mark and my cancer was considered "cured."  Plus this past year I hit another milestone: I have lived more of my life as a cancer survivor than I have lived before my cancer diagnosis. Now that is pretty remarkable.

I am also crying because, right off the top of my head, I know of four wonderful people whose lives are being impacted by a cancer diagnosis today.

One is a girlfriend with lung cancer, who is benefiting from an amazing breakthrough drug called crizotinib (Xalkori).  This drug is a true miracle for a small number of lung cancer patients, stopping cancer in its tracks and allowing patients to live with lung cancer as a chronic, but manageable, illness.  As often as I can, I send her greeting cards filled with words of encouragement, hope and support, just like someone did for me when I was going through my cancer treatment.

The second is a brave young woman with recurrent breast cancer. We "met" through a mutual friend on Facebook and she blogs over at Starting Over: My Journey with Cancer.  Not a day goes by that I don't send a silent prayer her way hoping that she gets to celebrate 23 birthdays past her cancer diagnosis like I have.

The third is a mature female friend who was also diagnosed with breast cancer.  She talked to me before her surgery and I gave her my "If I can beat this, you can beat this too." pep talk.  Thank goodness the surgery was successful in removed all the cancerous cells.  Two years later she is doing well and still cancer-free.  Being over 50, regular mammography was instrumental in catching her cancer early.

Finally, I just learned yesterday that one of my aunts is in hospice care, dying from advanced lung cancer.  Her husband, my dad's brother, died a few years back from lung cancer.  Their tragedy involves cigarette smoking, which causes approximately 443,000 deaths each year, 49,400 of those from exposure to secondhand smoke.

Then there are all the people I have known who have lost their battles with cancer and are no longer here with me today.  I hold them with fond memories and great care in my heart, always. Among them is my mother, who died from advanced colon cancer at the age of 61 in 1999.

Watch this video to learn more about all the ways that the American Cancer Society helps to prevent cancer, fund reasearch and support patients going through treatment.

This post is sponsored by the American Cancer Society. 

I ask that you please keep them in mind when making your end-of-year charitable donations.

Beyond Pink Ribbons: What I Did Yesterday To Prevent Breast Cancer

I went hardcore patient yesterday and scheduled an insane number of doctors appointment (two) and medical tests (two.)

Thank goodness my husband came with me all day long too and served as my chauffeur--a task he truly abhors--as well.  We got started at 10:30 a.m.; he was bright-eyed and bushy-tailed and me, well, not so much.  I was praying to get through the day with the insanely small amount of sleep I was able to catch the night before.  What a team we made!

I had no idea that during the course of the day I was going to be given a choice to make a real difference in the fight against breast cancer.

Yes, one of my appointments was for my yearly mammogram.  If you are a well-endowed woman like me, you know that getting your yearly mammogram can be quite uncomfortable.  I always get a little flare-up of my intercostal muscle pain afterwards (that's pain caused by your rib muscles.)  Plus the girls aren't too thrilled about getting squished like that either.  And I mean, they get really flattened...

But this year it was different too.

I discovered that UCLA is participating in a program called the Athena Breast Health Network.  The researchers believe that the key to breast health is in each woman's story and they are asking us to share our health stories with them so they can get closer to true prevention and a true cure for breast cancer.

First, I was given an iPad and asked to fill out a questionnaire that took about 15 minutes.  It probably wouldn't have taken so long if I knew how to use an iPad!  (Yeah, I'm one of those people who don't own or ever use one!)  I left my reading glasses with Robert and I didn't know you could zoom in and make the text bigger with your fingers.  I also could have really used a stylus to tap on the screen to more accurately select my answers.

They asked a lot of questions about the health history of my family and myself.  I don't have any female relatives that I know of who have ever had breast cancer, so perhaps that made the questionnaire easier to complete.  They did ask if anyone in my family had leukemia before the age of 40.  Now that was a red flag for me since I am Miss I Survived Leukemia at the age of 22.  So when I turned my iPad in, I asked the research assistant present if there was an emerging link between the two.  They said no.

I Googled it when I got home and found this article on Medscape: Risk of Second Malignant Neoplasms After Childhood Leukemia and Lymphoma. I am going to follow up with a question to my cancer suvivorship team at the UCLA Livestrong Survivorship Center for Excellence as well.

One of the questions that they asked on the questionnaire was whether you were willing to give the researchers a small sample of saliva or blood.  Of course I said yes.  So when I turned in my iPad I was given a 8 1/2 by 11 laminated sheet of paper to hold that I guess was to signal the staff of my choice.  I sat back down, listened to the utterances of lady next to me as she struggled with using her iPad to answer the questions and then looked around and noticed that I was the only one with that special piece of paper.

Huh?!? I thought to myself.  No one else volunteered to give a sample?

For a split second I almost regretted my decision.  Then I rationalized that, with my crazy medical history, I was probably not the ideal candidate for analysis.  I half expected that my sample might get thrown out based on those facts alone. But after those fleeting thoughts, I decided that since I said yes, I wasn't going to back out.  Especially since no one else appeared to be stepping up and joining me.

I got escorted back into the changing area and shown to a booth so I could get into a gown.  My instructions were to place the opening to the front.  This is, of course, my second least favorite part of getting a mammogram.  The gowns are always too small for my bosoms, so I inevitable have to wear two gowns, one opening in front and one over that opening to the back, to keep the girls covered so there isn't an accidental unveiling before I get to the mammography room.

As I stepped out of the booth, I was almost handed yet another one of those 8 1/2 by 11 special flyers.  I declined it, showing the nurse I already had one.  They must be super excited that I volunteered, I thought to myself.

"Come in here then and let's get your sample," she said with a smile.

Luckily for me, I only had to give a saliva sample.  Not that giving a blood sample would have been horrible.  Heck, I am giving blood samples to the lab at least four times a year and sometimes they are taking up to 6 tubes of blood at a time.  Giving saliva, in comparison, seems like a piece of cake.  In reality, between trying to keep my gown in place and coaxing my chronically dry mouth into producing enough saliva, the experience was a little gawky and ungraceful.  But I managed it.

I asked if they would test my sample for the breast cancer gene and was told no.  Apparently I won't be hearing about any results from the sample I just gave them.  But that's O.K.  I get the satisfaction of knowing I am helping advance medical science...IF they find my sample usable.  

Then it was on to the mammography room and the Selenia digital mammography machine.  It is strange that I find it a bit comforting that something that shares the spelling of my name takes the pictures?  The tech assisting me was the same one from last year.  I filled the awkwardness in the room with chat about how my husband and I bought an indoor electric turkey fryer and would be using it for the first time this Thanksgiving to prepare our bird.

Four views later, I left the room promising to let her know how the turkey turned out when I come back next year.

I headed back to the booth, changed out of the gowns, put my clothes on and headed out.  The whole visit took less than 30 minutes.

Sure, I'm always I little anxious about the results, but they come in the mail a few weeks later.  In the meantime, I'll put on my best Scarlett O'Hara face: I can't think about that right now. If I do, I'll go crazy. I'll think about that tomorrow.

The real difference this time is I got to walk away feeling like, in a very small way, I might be helping one of my 'sisters' prevent or beat breast cancer because I chose to participate in a research study.

I'm not the only one making a difference.  You can participate too!  Simply schedule your next mammogram at one of these participating University of California Medical Centers: UC Davis, UC Irvine, UCLA, UC San Diego or UC San Francisco.  Visit the Athena Breast Health Network website for more information.

Oh, and please consider volunteering to help medical research whenever you are presented an opportunity to do so.

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)

Thank you, thank you, thank you!

Break Cancer: My Young Adult Cancer Experience

As a 23 year cancer survivor, sometimes I am asked how I found out that I had cancer. So today I'd like to share that story with you.


The Fall of 1987

September

My September that year started out like it had for the past four years. I was returning back to my undergraduate studies at UCLA. Only this was my senior year and the pressure was on to figure out what I was going to do with the rest of my life once I graduated with my Bachelors of Science in Kinesiology.

Then I got sick with some viral infection. To be honest, I can't quite remember if it was a stomach bug or some kind of a cold. What I do remember is that I didn't quite feel fully recovered from it once most of the symptoms had resolved. I kept going back to Student Health complaining that I wasn't feeling better.

October

By Halloween I still wasn't feeling 100% better, so I sought out a referral to a good general practice doctor in the vicinity of campus. I was able to see a regular doctor because at age 22 I was still on both of my parents' health insurance policies. After listening to my symptoms, completing an examination and taking some blood, this new doctor thought I was experiencing some kind of post-viral syndrome. He also mentioned that my white blood cell count was a little on the low side, but opted for a wait-and-see treatment approach.

November

I spent the month, and the Thanksgiving holiday, staying home from classes, taking it easy, getting extra rest and following up with my new doctor.

December

With no improvement, I started feeling frustrated. So I contacted my pediatrician in the San Fernando Valley and made an appointment to see him. Then I head to Santa Monica to get my records from the doctor there and discovered that it wasn't just my white blood cell count that was low--my red blood cell count was low too.

It felt weird being the oldest patient sitting in the waiting room of my pediatrician's office reading a copy of Highlights magazine, but I trusted that my pediatrician could figure out what was wrong with me. I hadn't seen him in over four years, so we spent a little time catching up before getting down to business. When all was said and done, he wanted to wait just a little bit longer to see if my counts would come back up on their own.

So I spent the week of Christmas 1987 and the week of New Year's 1988 trying my hardest to get better.

The Winter of 1988

January

I headed back to see my pediatrician the Monday after the New Year's. More blood was taken at that appointment and I received a call a few days later with the results. I learned that instead of improving, my blood counts have gotten worse, with my white blood cell count now at 0.9. (For reference, the normal range of the white blood cell count is 4.3 to 10.8 x 109 cells per liter in international units (IU).) The next words out of my pediatrician's mouth were, "I'm setting up an appointment for you to see a hematologist here in my building for later this week."

After three months of waiting, things started happening very quickly.

I saw the hematologist on Thursday and he scheduled a bone marrow biopsy for the next day. The following Wednesday I returned for the results of my biopsy and was told that I had leukemia. I was offered the option to start treatment at the community hospital a few blocks away from the hematologist's office, but I decided I wanted to go to UCLA for a second opinion and treatment. My parents drove me from that morning appointment straight to UCLA for an afternoon appointment in the Bowyer Oncology Clinic. By 5 PM I had been admitted into the hospital.

The View from 2011

I can see today that some of the early warning signs of my cancer had been missed by the doctors treating me back in 1987. Clearly my diagnosis of leukemia was delayed; fortunately for me my diagnosis didn't come too late. I was also incredibly fortunate to have my parents' medical insurance and I truly believe that participating in a clinical trial at UCLA increased my chances for becoming a cancer survivor.

It saddens me to learn that the survival rate for young adults with cancer has remained the same over the past 30 years. Since 1988, I thought there had been numerous advances in cancer early detection and treatment. Quite frankly, I expected that my diagnosis story would have been ancient history by now, not current events. We all have heard that early detection and early treatment of cancer yields a much better prognosis. I think it's about time young adults benefited from this reality.

This is why I am asking you today to help me Break Cancer.

I dare you: leave me a comment on this blog post. Help me set a record for the "Most Comments Received on a Cancer-Related Blog Post in 24 Hours." Together let's raise awareness about the issues facing young adults diagnosed with cancer today. Together, let's Break Cancer!

Question of the Week: Can You Help Me @BreakCancer?

Okay, so I admit that this is more of a request and less of a question this week.

I want to ask all of my readers for their help with my impromptu Break Cancer event that I have scheduled for this Friday, April 22nd.

As I mentioned at the end of my Saturday post In Focus: Livestrong Young Adult Alliance (YAA), I got inspired to participate in the Break Cancer project. This is a collaboration between the YAA and URDB World Records. I am setting out to break a record for the "Most Comments Received on a Cancer-Related Blog Posts in 24 Hours" on a post I will be writing for Friday about my experience as a young adult cancer patient.

I can't do this without your help.

I need as many people as possible to come by my blog between 12 midnight to 11:59 PM Pacific Daylight Time on Friday and leave me a comment. In return, each commenter gets the satisfaction of knowing that they are helping to raise awareness of the issues facing young adults diagnosed with cancer, which is one of the primary goals of the YAA.

Please don't feel intimidated by the thought of leaving a comment. I'm just asking you to share a few words like "Great post." or "Good job." or "Good luck setting the record." or " Way to go." or "Break cancer!" or "Hey, come over and comment on my blog now."

Plus I want to take this opportunity to remind you that I do have anonymous commenting enabled, which means you don't need to share any of your personal information to leave a comment.

So, this Friday can you help me Break Cancer?

Please feel free to share the details below with anyone else you'd think would like to participate in this event:

What: Help Selena Break Cancer with the Livestrong Young Adult Alliance
When: Friday, April 22 from 12 midnight to 11:59 PM Pacific Daylight Time
Where: Selena's blog Oh My Aches and Pains! (http://www.ohmyachesandpains.info)
How: Selena is setting out to break a record for the "Most Comments Received on a Cancer-Related Blog Posts in 24 Hours." She needs you to leave a comment on her post this Friday titled BreakCancer: My Young Adult Cancer Experience. In return for just a few minutes of your time, you'll get the satisfaction of knowing that you are helping to raise awareness of the issues facing young adults diagnosed with cancer.

You can also share this message on Twitter:

Save the Date: Fri, April 22, 2011 any time btwn 12 midnight-11:59 PM PDT. Help @SelenaMKI @BreakCancer! http://bit.ly/f0bPvw Pls RT

Let me know what you think of my Break Cancer world record attempt here or over on the OMA&P! Facebook page.

Related articles

• In Focus: Livestrong Young Adult Alliance (ohmyachesandpains.info)
• Break Cancer: My Young Adult Cancer Experience (ohmyachesandpains.info)

There Is No Way I Can Travel to Italy

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The other night a nightmare woke me up. I was dreaming about a friend I met through work many years ago. She was making an announcement to a group of family and friends that she and her husband were moving to Italy. She said, "I will remain friends with all of you, even though we are moving to Italy."

I shook my head and said, "No, you won't."

She replied, "Oh course we will. You can come and visit us in Italy any time. It really isn't that far away."

I responded, "I have all these illnesses that make traveling next to impossible. There is no way I can travel to Italy, which means we aren't going to be friends anymore."

Then I burst into tears.

At this point I woke up. After I got my bearings, my first thought was 'Why was this dream a nightmare?'

You see, this friend did make a similar promise to me several years ago when she moved from Los Angeles back to the East Coast. Predictably, we lost contact after she moved. But then a few years ago, she moved back to Los Angeles. Unfortunately, that hasn't translated into us seeing each other, even though she lives only 2 miles away from me.

I'll admit that I am a bit disappointed we haven't resumed our friendship, but I am not at all surprised. I no longer think it is a realistic goal to stay in contact with every friend I make and now accept that most of the people in my life will come and go.

Perhaps a clue to what made my dream a nightmare lies in this exclamation:

"I have all these illnesses that make traveling next to impossible. There is no way I can travel to Italy, which means we aren't going to be friends anymore."

Living with chronic illness and being disabled makes the reality of both travel to Italy and maintaining friendships a much more difficult proposition.

I think the biggest obstacle I face is how much the people around me underestimate the impact illness has on my life. They really have no idea how little energy I have and how much energy it takes for me to get together with them. Then factor in my limited ability to drive to meet up with friends and the unconventional hours I keep due to my sleep disorders and it seems my lifestyle doesn't mesh with most of my peers' schedules.

Yes, for me right now, having many close friendships is a lot like traveling to Italy: a beautiful dream, but a logistical nightmare.

We Are Meant to Be Here

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I do not think we can ever know how much we will affect all the people we meet in our lifetime.

Perhaps, for those people closest to us, we can momentarily see how our words and deeds effects them when they are right in front of us. But when we part or move on, we have no idea what lasting effects this contact will have. I often wonder how I have affected the people I have met in my lifetime so far. I know that many people have impacted my life and that some of those people will never know how much they affected me.

Let me share one such story:

When I was a undergraduate student at UCLA I worked as a clerk in the medical center for a orthopaedic oncologist. He saw patients with bone and muscle tumors. One of his patients was a teenaged boy diagnosed with a particularly bad type of bone tumor.

While I never met this patient, I did have contact with his mother over the phone. I set up the initial consultation appointment. After his referral to an oncologist, I heard back from his mother than her son was refusing treatment. Devastated, his mother sought my help and I arrange a second opinion with another recommended doctor closer to his home in Orange County and made sure all his medical records were copied and sent to this doctor.

Even after this second consultation, the teenager continued to refuse treatment. Instead, his family took him to a clinic in Mexico. Occasionally, the doctor I worked for received medical updates and I would read them as I filed them into his chart. With each report, his cancer spread and worsened. The last report was from the Emergency Room. He arrived in very poor condition and, having finally changed his mind, he was asking for treatment. He was admitted but did not live long enough to receive it.

My heart went out to this boy and his family.

About 9 months later, I was diagnosed with cancer: acute promyelocytic leukemia. I remembered this boy and his story. On the day I was given the results of my bone marrow biopsy, I asked to be taken to UCLA so I could begin my cancer treatment.

I did not know if I would live or die, but I knew that if I didn't follow whatever treatment course my doctors recommended, I would not survive.

Twenty-three years later, I am still asking myself, 'Was this boy meant to be in my life? Was his cancer experience a cautionary tale to prime me for my own cancer experience? Would things have been different if he had not touched my life?'

I do not think we can ever know how much we will affect all the people we meet in our lifetime. Sometimes we need to be reminded of this, especially when we are feeling down, useless or a burden on other people. I believe that we are meant to be here, in this moment, even if our purpose for being here is not clear to us or our effect on others around us never truly revealed.

Fall Down Seven Times, Get Up Eight

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Did you know that I am in a multiracial marriage? My husband is of Japanese descent and I am of German, Irish and French descent. Being exposed to different ideas, traditions and legends is one of the benefits of being in a multicultural marriage.

This is how I learned about the legend of Daruma and the Japanese proverb nana korobi yaoki, which translates to “Fall down seven times, get up eight”.

Daruma essentially is a wishing doll. You focus on an intention, then color in one of his blank eyes. That's when he goes to work for you, reminding you of your commitment to your goal. When your goal is achieve, you celebrate by filling in his other eye. Read more about Daruma here.

His rolly-polly shape embodies the spirit of the Japanese proverb “Fall down seven times, get up eight.” Knock him over and because of his shape, he'll spring back into his upright stance. (Which makes me wonder if they got the idea for Weebles toys from the Daruma!)

Could my life with chronic illness have a more fitting byline than “Fall down seven times, get up eight.” or a more fitting mascot than Daruma?

Over the past six years learning to live with fibromyalgia, I have endured many setbacks, flare-ups, brick walls, frustrations and disappointments. What has kept me going is persistence and patience. I don't give up when I fall down, I figure out how to get back up. Granted, it might take me a while to work out exactly how I get back up, but eventually I always seem to push my way back to upright.

Plus the many health adversities I have faced in the past 20+ years, like cancer, diabetes, Hepatitis C and infertility, have taught me to reframe problems as challenges to be faced and mastered. Along the way, I've discovered that I'm a girl who is always up for a challenge. I have also learned to how to endure setbacks. What makes this possible is knowing that setbacks do not last forever, especially if I am patient enough to wait them out and persistent enough to get up and move forward again.

Which brings me to one last pearl of Japanese wisdom: tamashii. This is the Japanese word for indomitable spirit, a word used to describe the traits and attitude of a successful warrior.

Oh my, how my life with chronic illness has developed my tamashii!


How do you face the setbacks and challenges of life with chronic illness? Do you have an inspiring mascot or byline? Share your thoughts by leaving your comment below.

Welcoming A New Member to the Cancer Club

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I have a friend who was just diagnosed with lung cancer last week. It was a diagnosis that came out of the blue, without rhyme or reason.

Coincidentally, I already had plans to see her this past weekend at the annual Halloween party that she and her husband throw.

To be honest, I thought they were going to cancel the party. When they didn't, I thought that the party might be awkward in light of her diagnosis. Not that I felt awkward about her news--as a cancer survivor, I really get it that other people get cancer and really wanted to have an opportunity to show my support for her. It's just that I know some people who haven't had illness in their lives often get weird around people who are newly diagnosed.

The party was a success, even though it wasn't as well attended as in previous years. The theme this year was Moroccan nights and the spread of Moroccan-inspired food was delicious. I loved how they turned their living room into a tent to give it an authentic Moroccan bazaar atmosphere.

The thing is, the best part of the party was when everyone else left and it was just me, my husband and our friends. I got to have a heart-to-heart with my friend and ask her how she was doing with her diagnosis and all the tests. I got to break that weirdness barrier and have a real conversation with her.

I admit that in my mind, I had prepared an agenda of sorts for our conversation. You see, I wanted to impart a message of hope and understanding to her. I wanted her to embrace that she was already a cancer survivor and that every day she lived past her diagnosis was another day of survival. I wanted her to know that this was going to be a battle and that parts of this journey were going to suck. I wanted her to ignore the statistics about her disease and focus on taking things one step at a time, one piece of news at a time, one test at a time, one feeling at a time.

I also wanted her to know that I wanted to be there for her, however she wanted my support.

It is truly heartbreaking for me when others join the "cancer club." But as a 22 year member, I also feel a responsibility to reach out to fellow cancer survivors, whether newly diagnosed or new to the reality of cancer treatment long term and late effects. I feel a calling to welcome them to the "club" and give them an orientation if they want one.

As much as I want cancer to be a part of my past, clearly it is not done with me. It reminds me of this every time it continues to affect the people in my life. I am not afraid to stand up to cancer, reach out and provide support to people living with it and it's aftermath. As a cancer survivor, I know this is the most important thing I can do.


Please send some healing thoughts to my friend as she gets her complete diagnosis and treatment plan this week.

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Nothing to Fear

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It's weird to think that I have lived a life full of illnesses and health problems that other people fear.

Living this kind of life, I have come to equate the word fear with the words decision and risk. You see, when things get really scary, it usually means that I have a decision to make or a risk I must consider taking. Somehow I have always found the courage to make all those tough decisions and take those imposing risks.

Perhaps it is because, before my life with illness began at 22, I was already well on my way to developing the skill of stepping out of my comfort zone and taking risks.

I moved out of my parents house at 18.

I figured out how to go to college, work and support myself all at the same time.

Living in the dorms my first two years of college, surrounded by new people, I tried lots of new things: music, points-of-view, food, clothes, perspectives, cultures and experiences.

I asked boys out on dates instead of waiting around for them to ask me.

By 22, I had made lots of decisions and lots of mistakes, many of which provided valuable lessons.

Some might say that I was courageous in the face of fear because I was diagnosed with cancer and went through eight months of chemotherapy to beat it. Perhaps I was, but I don't remember it that way. Because once I heard the word cancer and the path of treatment was laid before me, I knew I had no choice but to go in that direction.

It wasn't until after my cancer treatment that I truly faced my fears. And there were so many things to be fearful of:

I was scared when I returned to my college studies, knowing that all my friends had graduated and moved on without me.

I was scared about living a life with viral hepatitis, knowing that future health problems might be lurking around the corner.

I was scared that boys wouldn't find me attractive any more, since my cancer treatment made me unable to have children.

I was scared that being a cancer survivor would make it harder to make new friends to replace all the ones that I lost during my cancer experience.

I was scared about spending the next five years waiting to find out if my cancer would be cured or if it would return.

Looking back, I see the courage it took to start my life over again after I had cancer. I see how many decisions I made and risks I took to overcome my fears. Most of all, I see how confronting my fears and taking these risks paid off.

Here now today, I acknowledge that these past six years of living with chronic, disabling illnesses have been a new and difficult chapter in my life. There have been many scary moments, full of fears about what impact chronic illness would have on my life and how I would have to change and adapt to my new circumstances. Once again, there have been many decisions to make and risks to take.

Through it all, I have been constantly amazed at how things seem to work themselves out. The more I deal with life and it's uncertainties, the more I realize that there is nothing to fear. There is nothing to fear because, in the end, I will be O.K. As long as I do my part, by taking risks and making decisions, the Universe will take care of me.

I just need to keep feeling the fear and living my life anyway.

Related articles

• Change The Way You See Fear And Change Your Life - Stepcase Lifehack (lifehack.org)
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• Tackling Fears (prinyourpajamas.com)

Save It For Later

Image by Adam Foster

I love 80's music, probably because I am old and that is the decade in which I reached adulthood. Which, of course makes me somewhere closer to middle age than I care to admit. Although I swear mentally I feel like I am still in my twenties, now just smarter, wiser and making fewer mistakes. As for my poor body, well it feels much closer to retirement age than my actual age.

I guess not having any kids makes this illusion possible. I don't have anyone reminding me that the 80's are no longer cool and neither am I...

So since I have been trying to follow the blogging theme of SAVE this month, I keep playing the English Beat song Save It For Later in my head. Weird thing is, I went to look up the lyrics for the song online and discovered this:

Two dozen other stupid reasons
Why we should suffer for this
Don't bother trying to explain them
Just hold my hand while I come to a decision on it.

Sooner or later
your legs give way, you hit the ground
Save it for later
don't run away and let me down.
Sooner or later
you'll hit the deck you'll get found out
Save it for later
don't runaway and let me down, you let me down.
You run away run away runaway runaway runaway runaway
And let me down.

Hmm, O.K., didn't realize until now how much this speaks to my life with chronic illness. This is how I would paraphrase it:

Don't bother trying to explain to me why I am suffering like this. Can't you see! My body has let me down and I have hit the ground. I've hit the deck and found out just how fragile I am. All I want is for you to just hold my hand; please don't runaway and let me down.

I found an interview with English Beat singer/guitarist Dave Wakeling who had this to say about the meaning of the song:

"... it was about turning from a teenager to someone in their 20s, and realizing that the effortless promise for your teenage years was not necessarily going to show (up). ...it was about being lost, about not really knowing your role in the world, trying to find your place in the world. ...you'd have all sorts of people telling you this, that, and the other, and advising you, and it didn't actually seem like they knew any better. So it was like keep your advice to yourself. Save it - for later."

So yeah, the infinite promise of my teenage years came crashing to a stop when I was diagnosed with cancer at age 22. I've found myself feeling lost more than once since then and I've had to reinvent myself several times. While it might be easier for someone else to actually see my issues, it's up to me to figure out my next move. So if you are deciding whether to give me advice or support, the safe bet is give me support.

You can't go wrong just holding my hand and being there for me.

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A Saving Grace for When Everything Goes Wrong

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They are not moments I like to think about, now that they are securely a part of my past. What am I talking about? The great big meltdown moments that have occurred in my life...

The First Time

The first major meltdown happened a month after I was diagnosed with leukemia. I was excited about my upcoming released from the hospital after a successful first course of chemotherapy that put my cancer into remission. While visiting me in my hospital room a day or two before that big day, my boyfriend broke up with me.

I was devastated.

The Second Time

It was eight months after I was diagnosed with type 2 diabetes, back in 1999. I was hellbent on managing my diabetes with diet and exercise only. Part of my treatment plan was seeing a dietitian for regular consultations. Those first eight months I obsessively watched every single piece of food I put in my mouth and religiously worked out at least three times a week. I got my blood sugars under excellent control, but could not succeed in losing a single pound.

Mentioning this to the dietitian, she replied, "I guess you must have a farmer body. You have to be moving for most of your day in order for you to lose weigh."

What the heck! Well, screw this then...

The Third Time

Talk about adding insult to injury. The trip-and-fall accident that put me on my journey with chronic pain and chronic fatigue happened while I was at work. Which meant my initial medical treatment didn't come from my own personal doctor, but a contracted occupational medicine clinic. Not only did they not help, the treatments they prescribed made my pain worse. Oh yeah, and when I reported that my pain was getting worse, not better, I was accused of not wanting to go back to work.

So after three weeks, when I was discharged from medical care and told I could go back to work--the medical staff totally ignoring, disregarding, and disbelieving my very real and very disabling pain--it felt like the last straw that broke the proverbial camel's back.

I was so despondent by the time I made it to my own doctor's office that I told him I couldn't take it anymore.

The Last Time

A former rheumatologist convinced me that I needed to treat my chronic Hepatitis C infection since he thought it was implicated in my fibromyalgia symptoms. I got enrolled into a clinical study in August 2007. About two weeks in, all hell broke loose. I developed multiple viral and bacterial infections: eye infection, double ear infections, sinus infection and severe upper respiratory infection.

A week later I was in the Emergency Room being evaluated for a possible heart attack.

Turns out, I was in bad shape due to a flare-up of my undiagnosed dysautonomia, with symptoms reaching a higher level of intensity. The symptoms made me feel so agitated that I honestly thought I was going to have to be sedated. After several unreturned calls to my rheumatologist, a staff member at the Cedars Sinai Chronic Pain and Fibromyalgia Program intervened on my behalf and got the doctor to call me back. He prescribed a beta-blocker that made a world of difference. But it was too late...

The Hepatitis C treatment, subsequent hospitalization and dysautonomia symptom overload left me bed-bound and facing a long three month climb back to my previous level of functioning.

A Saving Grace

So what helped me weather these storms and get to a better place? My saving grace can be summed up with the one amazing quote (thanks to my friend @sonjathegreat for posting this yesterday on Twitter):

“Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.”

~Thich Nhat Hanh

Quite honestly, it is the hope that tomorrow will be a better day that has helped me get through all these times of emotional upheaval and illness. Hope helps with all the everyday setbacks, adversities and hardships too. I've come to rely on the fact that the promise of a better tomorrow makes all my misfortunes bearable.

My saving grace is that hope heals.

What is your saving grace? Share yours with me when you leave me some comment love...

Good Reads: Seven Posts to Savor

Image by kevindooley via Flickr

I admit that I have a weakness for memes, the quintessential blog writing prompt. So when I saw a tweet yesterday from the Problogger about completing this exercise, well I was all over it. So in this edition of Good Reads, I'm doing a bit of shameless self-promotion and showcasing some of my own blogs posts so you can get to know me better...

1) My first post

I started blogging at the now defunct AOL Journals and migrated my blog from there to Blogger in October 2008. I recently reprinted my first post from AOL journals dated January 2, 2006 here. But I should also highlight My Last 100 Days, the first post from my blog-a-day in the month of May challenge that I accepted back in 2009 from my good friend Cyndie. That challenge got me on the road to consistently blogging and made me into the blogger I am today. Thanks again Cyndie!

2) A post you enjoyed writing the most &
3) A post which had a great discussion

I really had a lot of fun writing the post My Dream Job and it caused quite a stir. Seems readers actually thought I was writing about a real life temp agency for people with disabilities! The beginning of the post was a pure work of fiction, but I think it highlighted the real need for employment opportunities for persons with disabilities. I want to thank the folks over at Bloggers Unite for inspiring me to write this post for Empowering People with Disabilities Day.

(Addendum: I was invited by the National Disability Institute to use the post My Dream Job create a video and submit it to their American Dream Contest in July 2010. I blogged about the invitation in My Dream Job: Record, Save and Submit and you can view my video submission on YouTube here.)

4) A post on someone else’s blog that you wish you’d written

I'll let you in on a secret ... I am not so good about reading other people's blogs on a consistent basis. In fact, if anyone out there has a system they use to accomplish this, please let me in on your secret! That's why I volunteer to help out with hosting blog carnivals because you have to read the posts to write up a good carnival post.

This is how I found this post you are not. at the blog Moosh in Indy while helping out with the ChronicBabe blog carnival. I LOVE this post and so wish I could be inspired to write a post like this. You have to check it out and leave Moosh some comment love...

5) Your most helpful post &
6) A post that you wish more people had read

I wrote My Favorite Fibromyalgia Coping Strategy because I wanted to help others get started making their lives fibro-friendly. I even submitted this post to the Patients for a Moment blog carnival. Unfortunately, this is a post that doesn't have any comments on it, which makes me think I didn't reach those in need of this information. I know the post series How to Become a Fibromyalgia Scientist, Embracing My Life as a "Fibromyalgia Scientist" and Fibromyalgia Scientist Case Study: Grocery Shopping cover some of the same information and get more hits. I just am partial to my liberal use of the word fibro-friendly in My Favorite Fibromyalgia Coping Strategy.

7) A post with a title that you are proud of

Hands down, it has to be My Advice: Don't Get Cancer. It probably should come with the subtitle: Words of Wisdom from a Long-Term Cancer Survivor. I am proud of it because it is short, sweet and to-the-point with a kick of audacity and a big no duh! sprinkled in for good measure.

O.K., so I probably highlighted more than seven posts, but hey, they all are great representations of some of my best blogging. It goes without saying that I really enjoy the challenge of blogging and feel I get better and better with each post I publish. Which reminds me once again that there are some great benefits to working on living my best life despite chronic illness.

I challenge you to complete this meme too! Leave me a comment with the link to your Seven Posts to Savor and I promise to come by to read it and leave you some comment love. And let me know if you want to throw down the gauntlet and participate in a blog-a-day for a month challenge too.

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Chronic Illness: It Sucks ... And I Deal With It

What advice would I give to someone new to living with chronic illness?

There are so many things I do to cope with my own chronic illnesses, I could probably write a self help book (or several.) But as I contemplate this question, I recognize that what works for me may not work for someone else. Plus, giving advice ignores the fact that today is the result of my numerous experiments, trying out many different strategies to get to the ones that work for me.

Which got me thinking that maybe the best thing to share with someone new to chronic illness might not advice, but my approach.

So here is my guiding philosophy--> Chronic Illness: It Sucks ... and I Deal With It.

It Sucks

A lot of people comment about how positive I am in dealing with my multiple chronic illnesses and ask me how I do it. Here is my secret: I feel all my feelings--the easy ones, the hard ones, the pleasant ones and the crappy ones. I have found that the only way I can tap into living my best life with chronic illness is to be in touch with all my feelings.

I say embrace the suck and all the other feelings that come your way. Don't fight them and don't stuff them. The surprising part is that once felt, feelings don't last very long. Feeling your feelings lets them pass through and dissipate, so they don't control you or make your life miserable.

This is a lesson I learned the hard way.

When I was diagnosed with cancer at age 22, everyone around me started talking to me having a positive attitude. It was like having a positive attitude was the only thing that was going to cure my cancer. So I pushed all my other emotions down and didn't deal with them in the moment. But that didn't mean they went away. In fact, a few years later, I started having problems with depression. I learned that I missed out on dealing with some aspects of my cancer experience because I avoided my feelings.

Feeling your feelings helps you get to the next the next step ... acceptance.

... I Deal With It

Chronic illness sucks, but what I am going to do about it? I can't wish it away, I can't make it go away and I certainly don't want my life to suck. So after I took some time to feel my feelings and process them, I asked myself what I wanted my life to look like, even if chronic illness was going to be a part of it.

This is how my quest to live my best life despite chronic illness was born.

Yeah, it wasn't a path I chose, but this isn't the first time a monkey wrench had been thrown into my plans. I've learned to embrace this new path and start searching for new things I could do and new directions I wanted to go. I've tapped into the girl who likes a challenge, enjoys taking risks and rises to the occasion. I found a way despite the suck to get motivated and get moving towards the life I want.

So if you are new to chronic illness, I'm sorry. It really does suck, but I am sure you can find a way to deal with it too. Let me know if you need my help ... leave me a comment or send me an email.

P.S. I've discovered that when I am having problems dealing with it, it usually means I need to spend some time going back to feeling the suck. It's a process: two steps forward and one step back. I just keep feeling the suck ... and dealing with it.