Monthly Archives: November 2008

Breast Cancer and Vitamin D Levels

I’m going to get my vitamin D checked this week.  Now that I’m mostly finished with treatment I want to make sure my levels are good.  Here’s an article that talks about breast cancer and vitamin D levels.  That and I try to get outside for at least twenty minutes a day.  It’s a bit hard here in Michigan since most days are cloudy through the winter.  So my new doctor agreed to having that checked and my thyroid checked and wrote me a script.   Since my thyroid area was radiated I want to make sure it’s OK as well.

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Me….Giving Thanks

This is my Thanksgiving post.  I have so much to be thankful for this year and so much to reflect on.  It was this time last year I was chatting with other nursing moms saying…..”I’ve had a plugged duct for several weeks now…..”  I cringe when I realize how ironic it was that I was nursing at the same time I had Inflammatory Breast Cancer.  How the symptoms are so similar.  How crazy rare it all is and why it happened to me.  But mostly I am reflecting the beauty of this past year and how thankful I am for so much.  Through this experience I have lost some of my innocence….but I have gained a more tender heart.  It’s a good trade off. 

So here’s my top 10 list of Thanksgiving 2008…..

1.  Jesus….who drew me close to him.  I felt His presence throughout this illness.

2.  Jeremy….who takes everything in stride and never let me talk like I might not make it.

3.  My kiddos.  Their energy gives me energy.  Their love and grace carries me through.

4.  The ladies who went ahead of me and showed me it could be done…..and you could live to tell about it.  Like Kristen and Mary and all the bloggers I found within days of my diagnosis. 

5.  My mom and Jeremy’s mom who came for days at a time to care for me and my family.   And my parents who somehow instilled resiliance in their daughter.  I am forever grateful for that.

6.  My sister, extended family and close friends who sent lots of love across the miles.  Gift cards, knitted hats, a ring of hope.  What a blessing.

7.  My doctors at the cancer center.  They were my dream team…..and are all really cool ladies I might add.  What an inspiration you were!

8.  Dr. Alfaraz….we miss you terribly here in Kalamazoo.  We hope you’re doing OK.  I feel so blessed that you were here to care for me and my family.  I am so thankful you treated me holistically and gave me more than just the traditional route.  It made me feel like I was doing everything I could to get better.   We miss you.

9.  My church family who prayed for us and brought us meals. 

10.  For the cards and words of hope from so many people.  I have a huge basket full of cards.  Your daily reminders to stay strong was a constant source of encouragement.

Happy Thanksgiving.  Cherish the warmth of your family today.

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Selenium

http://www.naturalnews.com/016446.html

Another reason for a good multi-vitamin.

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Perseverance

I’ve been going through my “never published blogs.”  Here’s one I wrote two months after diagnosis on April 7th.  It’s so hard when you’re going through treatment.  I hope if you are going through treatment you find hope in my words.

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Last night we watched a movie called “We are Marshall.”  You’ve probably heard the story….the movie brought the nightmare back to the headlines after 30 some years.  A chartered plane with 37 football players along with many local fans were killed when their plane was struck by lightning as it returned from a game. 

I was drawn to the character Red Dawson.  He was the assistant coach that opted to drive home and make some recruiting stops along the way rather than take the plane that fateful night.  After he had the huge task of responding to moms, dads, sisters, brothers, and children in their grief, he reluctantly decides to continue coaching for one year.  He gave Marshall one more year of coaching.  One long year of rebuilding the team after such tragedy.  One year of reminder of such horrible loss. 

I’m  amazed and in awe of this man for having the courage and the perseverance to carry on.  I did a search later and read his story…..here it is if you want it.  http://sports.yahoo.com/ncaaf/news?slug=dw-marshall111406&prov=yhoo&type=lgns

How do you carry on with any normalcy when you’re faced with uncertainty.  Life is so fragile.  In my own life I’m faced with so much uncertainty.  I want to believe that through prayer and modern medicine I’ll one day be able to say I’m free and clear of cancer…..but I really don’t know.  I hear stories from so many people that know someone….a sister, a friend, a mother who has had breast cancer and is now cancer free…..but then I go to my favorite blogs and read about someone else who has passed away from inflammatory breast cancer.  It keeps me keenly aware of my mortality and how much I am not ready to die yet.  I so want to be there for my kids and find joy in living.  But right now I have to put on a brave front because inside I’m so afraid.  At night I climb into bed and cuddle with Jeremy and cry.  During the difficult days, not even the sun seems to pull me out of the despair I feel.

But I perservere.  I will not give up.

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Enjoying The View

I’m not sure if it’s inspiration I’ve been lacking or I’ve been sleeping better at night.  It’s 4:30 am and I forgot to take my melatonin so I’ve been tossing and turning and thought it might be good if I get up and share my thoughts.

As of late I’ve been reading in 1 Kings.  Sometimes it takes me mulling over a passage in my mind for several days before something hits me.  So it’s not surprising that my first reading of 1 Kings 1 wouldn’t register any surprising insight.  But in the past few days I’ve been thinking about poor Adonijah.

Adonijah was King David’s third son to his wife Haggith.  He is basically the rightful heir to the throne so he jumps the gun a bit and declares himself king before his father’s blessing or his father’s death.   It also implies in scripture that Adonijah is a little bit cocky and his dad didn’t reprimand him enough growing up.  But with 8 wives, concubines and who knows how many children how can you possibly expect to be emotionally available to that many children?

24-27“My master the king,” Nathan began, “did you say, ‘Adonijah shall be king after me and sit on my throne’? Because that’s what’s happening. He’s thrown a huge coronation feast—cattle, grain-fed heifers, sheep—inviting all the king’s sons, the army officers, and Abiathar the priest. They’re having a grand time, eating and drinking and shouting, ‘Long live King Adonijah!’ But I wasn’t invited, nor was the priest Zadok, nor Benaiah son of Jehoiada, nor your servant Solomon. Is this something that my master the king has done behind our backs, not telling your servants who you intended to be king after you?”

I’m not sure what Adonijah was feeling when he clung to the hope that he would be king, but maybe he thought that if he didn’t cling to what he could, as quickly as he could, the opportunity might slip away.  Maybe he knew his father favored Solomon or had promised Bathsheba that her son would be heir to the throne. 

I think I know what it feels like to sense life slipping out of your control.  Grasping for whatever shred of dignity you can.  My spiral first started when I quit working to stay home with my kids.  I went from feeling important and feeling like I made a difference to changing diapers, wiping up spit and being a full time waitress to my kids.  I thought life was passing me by.

Then I got cancer…..and the world picked up speed as I sloooowwwwwwed waaaay down.  So I went from feeling important, to being full-time mom and then I could barely be mom.   Most days I was barely well enough to change a diaper. 

Have you ever seen the videos where someone is standing still and the world is whizzing by in fast forward.  This is how I’ve felt for the past 9 months. 

Like I would try to reach out and grab life and it would just slip through my fingers.  I couldn’t get ahold of anything. 

Maybe I’m not so unlike Adonijah.  I tried to stake claims to things that weren’t really mine to poses.  I was more interested in getting ahead than enjoying the journey.  And each step down I took I wanted to go back.  When I got sick I wanted so badly to be mom…..a normal mom.  I can’t say that I want to go back to being sick, but I wish I would have allowed myself to be in that place for the time God allowed it without feeling the need to control everything. 

I’m enjoying changing diapers these days, breathing in baby smells and making plans for my future.  I don’t worry so much that the world is speeding by without me.  I like the pace I’m going.  I’m enjoying the view a bit more and I’ve quit grabbing for things that aren’t mine to hold on to.

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Your Feedback

I suppose one of these days I’ll mosey on back over to Ann Arbor to meet with my doc at University of Michigan.  She is an expert in the field of IBC so her opinions matter.  I don’t feel quite the urgency that I felt last winter, but I still feel like I should go.  I was just reading at IBC Watch (The link is to the left) and being reminded how great it was that I responded so well to chemo (no trace of cancer).  Women who are Her2 positive have much better success rates thanks to Herceptin now.  (If you have IBC and you respond to chemo and herceptin…..this is a very good thing.  So don’t let the information out there scare you…..lots of sites need updating!)

So I’ve never thrown a question out……but here goes….

If you have recently had IBC…..did you have chemo again after radiation?  My oncologist at U of M had mentioned doing this a few times, although these discussions happened before the path report that was totally clear after my mastectomies.  So I started with chemo (taxotere, carboplatin and herceptin) which got the cancer even in my lymph nodes, then I had the mastectomies, then six weeks of radiation. 

I certainly don’t want to lose my hair again but thought maybe someone might respond as to why I might consider chemo again….especially if you did it or knew someone who did.

The Unquiet Bones

My dad’s newly published book is now available in the United States.  It’s a medieval mystery based in England.  It’s a medieval CSI of sorts.  This is my Dad’s first book of a series and I was pleasantly surprised.  I’m now a Hugh De Singleton fan and am looking forward to his next case!  Our family is quite proud of him and this ISa blatant attempt at promoting his book…..lol:)

If you’re looking for an inexpensive Christmas gift idea…..it’s a good read for someone who likes historical fiction.

You can read about the book here.  And you can buy it at Amazon.

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Creative Outlet

I went to a luncheon at the West Michigan Cancer Center recently and they had a panel of presenters on the topic of complimentary medicine.  One of the presenters teaches something like art and healing at Western Michigan University and also teaches art therapy classes at the center.  I can’t quote exactly what she said, nor have I tried to find the statistic….but basically it said that one session using creativity like art or writing gave a person health benefits for up to three months. 

I’ve been debating weather I should keep writing on this blog.  I seem to be lacking in inspiration.  I’ve never done cancer before so I’m not exactly sure how I’m supposed to feel now.  I feel relieved.  I want life to go back to normal…..but not necessarily the way it was since there were changes to be made.  I think I still have more to say…..but maybe I won’t say it as often.  Maybe once a week or so.  I’m going to give myself some slack that I don’t need to write every day.  But still take advantage of this creative outlet.

I’ll skip the decoupage and stick to blogging.

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Health Care Rantings….

I know people have a lot of things they are concerned about in the upcoming elections and I am no exception.  This year the issue of health care has come front a center for me.  I want to share with you why it should be for you as well.

After going through a health crisis like inflammatory breast cancer I realize how fortunate we are to live in the United States.  I just placed a call to the West Michigan Cancer Canter and they confirmed what I was pretty sure I knew.  If you don’t have insurance they will treat you regardless of your ability to pay and they will use whatever means they have available to help cover your cost of care. 

I have also read many articles that confirm that our crisis in the US is not the care we receive as much as it is the cost of care and the cost of insurance. 

With that said I have read a little bit about universal health coverage.  I have read enough to understand if I lived in Canada or Europe I would probably not be getting ready to spend the holiday season with my family.  I read differing opinions….but the bottom line is that if you live in a country with universal health care your wait time can be as much as 22 months for an MRI. 

When I was diagnosed with Inflammatory breast cancer I had a CAT scan at U of M that revealed something questionable in my other breast.  Two days later I had an MRI that revealed a second tumor (MRI’s are one of the most conclusive scans for determining tumors).  Had I not had these scans available to me my other tumor might have gone completely unnoticed until too late. 

Inflammatory breast cancer is also a rare, dangerous kind of breast cancer that spreads very quickly.  It starts in the lymphatic system which means that it is often metastasized before it is found.  6 months is often too late.

What would I have done if I lived in Canada? 

I want to hope that because my situation was urgent I would have gotten care quicker than usual….but when I read about health care in other industrialized nations (the US is the only wealthy industrialized nation without universal health care) I have to wonder.

I recently watched the movie “Living Proof”  about the drug herceptin that saved my life.  You can watch the movie online hereand I’ll just tell you I am the woman “Barb” who had a complete cure.  My tumors were completely gone with herceptin and chemo.  It is a miracle drug for me and thousands of women around the world.

What you need to know is that women in Canada and Europe had to beg and take legel action to get herceptin.  What you also need to know is that many of these women were given only months to live.  Not very long to battle the government to get life-saving medicine.   Here’s one woman’s story.

I’m not trying to scare you, and we certainly know the FDA has its own issues….but having universal health care means more government bureaucracy and more government control deciding what drug you can and can’t have.  Do you want the government deciding you shouldn’t have herceptin when it is the only option you have to save your life?  Here’s a whole article that touches on more concerns with universal health care.  Herceptin is a very expensive drug….and because it was so expensive….France (WHO #1 pick for health care in the world) did not want to approve it.  Not because it didn’t save lives, but because it was too expensive!  How’s that for making sure everybody has health care!  Let’s dumb it down to make sure everybody gets it! 

This should matter to you when you vote because one out of six women will get breast cancer and one out of three people in the US will get cancer.   Your friend, your mother, your child…..maybe even you!

I want to know that if I need good health care quickly I have it available to me…..and for the most part I do.  I want to know that if my child gets cancer or is injured that I will get the scans and the drugs I need to proceed with the very best life-saving treatment possible.  I don’t know of one emergency room in the US that would turn me away if I brought my seriously ill child to them.

It does matter to me that so many people in the US are uninsured.  But the truth is….even if you aren’t insured you will still get treated in the US.  Bankruptcy is always a possibility…..although unlikely with the assistance out there if you’re willing to do paperwork.  Bronson Hospital has paid our bill twice when we had difficulty with our deductible. 

The health care crisis has more to do with cost and insurance than it does with the quality of care.  I like the McCain plan because it addresses the problem of COST and the need for competition, not just a fair playing field.  Mandating a fair playing field when there isn’t a need for one means universal coverage which means slow care and government deciding on our medicine based on cost which will result in inadequate care for everyone. 

Even U of M told me they only financially assist those with NO health coverage at all.  So I was left with a $3,000 bill from my deductible.  Did I like that bill?  No…..but I liked the idea of living a lot more and set up a payment plan.

“Spreading the wealth” sounds really great…..but it might not be as good as it sounds if you look closely.  I for one don’t want the government more involved in my health decisions from what drugs are available to me to vaccinating my children. 

Thanks for letting me air my concerns and happy voting!