My experience with Breast Cancer

This is from the author of "Chicken Soup for the Breast Cancer Survivor's Soul", Mary Olsen Kelly.  I thought it worthy of passing on, especially since it gives you a good idea of the kind of person who wrote this book. (Which by the way, I am in the process of reading and LOVE IT).

lezlees at 11:04:41 AM CDT Permalink | Blog about this entry |  Add to del.icio.us |  digg this This entry has 1 comments: Show Recent | Add your own

Just as a teaser, here are some excerpts from a great new book - look for more information about it to follow in the coming days:

"No one chooses to have cancer.  It leaves a cloud hovering over one's life
because the outcome is never certain.  But then... what is?  When Catherine
was bed-ridden after each of the surgeries, I lovingly took care of her.
Spending more time at home, I had the opportunity to look around  and
appreciate the pleasures and treasures that are mine:  our faithful dog, the
richly stocked library, the lovely kitchen, the bed of recovery, the couch
of conviviality, the garden of dynamic life, and-most important-my healing
wife.  Being her is what I choose.- The Bus Ride, p.160 by John de
Strakosch, from the soon to be released title Chicken Soup for the Breast
Cancer Survivor's Soul (Health Communications Inc., Oct. 2006)

"Since my friend Pat died in 2000, there has not been one day that I have
not thought about her.  To hear me say that, you'd think that she and I were
really good friends... best friends.  But the truth is that Pat has played a
bigger part in my life since she died than she ever did when she was alive.
Pat and I were heart friends.  We had a connection that came from the soul,
a place where no one is self conscious, no one is afraid to look foolish.
It is a place where you can use words or music or art or movement or touch
to show how you feel.  Every day since she died, I hear Pat's voice saying
to me, 'Remember to play.'  And I play and I play.-You've got to play if you
want to win, p.150 by Lori Misicka, from the soon to be released title
Chicken Soup for the Breast Cancer Survivor's Soul (Health Communications
Inc., Oct. 2006)

Items shown here are shown with permission from:

FOR IMMEDIATE RELEASE
CONTACT: Erika Sumner, PR by the Book, (281) 895-7190, erika@prbythebook.com

Come back daily, you can read more in the coming days.... find out who this inspiring author is... read quotes from the author hereself , who just happens to also be a Breast Cancer Survivor... find out what book you can purchase to not only help support Breast Cancer Awareness but also lift your spirits!!!!!!!!!!!! As well find a link to purchasing this book!  

Thanks very much to Laura, a really nice PR who is allowing us this insight into a book that will help you keep your perspective together!

 

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Just heard from Lillian, the nurse at my Austin Dr's office.  She spoke with the Dr. about my not taking the Fosamax while waiting to have dental work done.  That's ok - so long as I start it back up as soon as possible ....still not something I am looking forward to due to the complications of it but I guess in comparison to the alternatives they may not be soo bad.  Of course, the medication is the least of the reccomendations....and since I am pretty positive that these would apply to anyone diagnosed with this.......

1.  No smoking.

2.  WALK! Increase weight bearing exercises to decrease body mass and increase muscle mass.  Use caution when walking to ensure no falls.

3.  Minimize caffine, which includes chocolate, coffee, sodas, tea, alcohol.... (ohhh god, there go most of my favorites!)

4.  Lose weight.  Maintain appropriate weight for bone structure since excess weight creates excess stress on bones.

5. Get your eyes checked and maintain a proper glasses prescription to minimize the chances of a fall.

6. and 7. For me, the two additional items are that I will start another drug, a nasal spray actually call myocalcium (spelling?) and also a physical therapy program to learn what I can do to further avoid falls or miss-moves when exercising.

I can't imagine that I'm alone in this - too many magazine articles and ads telling women to avoid the dangers of it.  I can promise --- it's not something I ever wanted and it gives new meaning to the idea of DRINK YOUR MILK!

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I went to Temple for a routine bone scan this last week.  Had the blood work and saw the doctor, as far as I can tell, I'm healthy.  Least as healthy as someone who is still taking Tamoxifen and Zoladex and extreme amounts of calcium can be.  The Doctor told me I'd hear from her Monday (which was yesterday) when the results came back.  No word yet on the bloodwork but I got the bone density results....

It's barely been ten months since my last bone density scan yet the results have changed.  Got a call from my Austin Doctors office yesterday, guess the results from my visit to Temple came back, at least the one for scan.  I've gone from Osteopenia in January (see my entry from January for a description of what that is) to Osteoporosis today.  I didn't actually  speak to the doctor yet, missed her call and when I called back I got to speak to her nurse.  But, think the information would have been the same either way.  Apparently my taking additional calcium and the Fosamax hadn't helped and my bones have decided to go on to the more devestaing level of decay. 

The nurse told me that I was to start taking 70 mg of the Fosamax a week verses my current dose, advised her that I've quit taking it so that I can have dental work done.  The jury is still out on that and I'm waiting to hear back.  IF the doctor determines that I shouldn't be off the Fosamax for 6 months then I will have to change the direction I'm going in for my dental work and go back on to it.  I'm hoping that doesn't happen but if it should, I will be paying tons of attention to what is going on inside my mouth since I really don't know which would be worse, losing part of my jaw to the medication that helps me keep bones or breaking bones to keep my jaw.... how do you decide which one would be the worse of the complications????????

I'll have to drive down to Austin now, will need to have further blood work done as well as a 24 hour urine catch test completed.  I was told I could wait until I'll be in Austin anyhow to do this but am contemplating heading down next week, I'm anxious to know why I'm not retaining all of this extra calcium......

It's October - have you had your Mammorgram yet?  And while you're at it, you may want to go ahead and schedule a bone density test!

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Life has a way of throwing curve balls!  Sometimes it sucks!  Here I had one weekend where everything wanted to happen!  The 3-day crewing... Breast Reconstruction... and the Livestrong Summit.  Ok, so choices - think my choice was made and then another curve ball has been thrown into the mix.  My brother is suffering ill health and I have to be prepared to fly back to South Carolina if necessary! 

The one constant for that weekend is that I'm off work for a week - from all jobs!  Not sure I've updated the job status lately - by day I'm a not-so-mild-mannered substitute teacher... by evening I'm an answering service/medical exchange operator and by night I work as a registration clerk at a local hospital.  Due to staff shortages the two part time jobs (hospital and answering service) have leaned towards full time for the last several months.  The paychecks are great but I feel like I live out of my car!  Except I just sold my car so I haven't even got that to support my never being home now. But anyhow, arrangements have been made, if it comes down to it - I can fly out and go visit family that weekend.

E-mail has been sent to reschedule the reconstruction.  That was the hardest one to send since it has been an issue since my initial surgery.  Thankfully Joanie was understanding and I can reschedule once everything settles down with family!

E-mail has been sent to cancel the crewing for the 3-day.  I'd be out of reach and out of contact there so cannot do that no matter how I look at it.  Will sign up for it again next year and make darn sure that I'm there!

Haven't cancelled the Summit.  Will wait till closer to the last minute then if I don't have to go back to South Carolina will go there.  That would be the easiest to leave at the last minute if I had to and is the closest to get to if I don't have to.

One thing I can say for sure, my life is *** NEVER*** boring!!!!!!!

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I just received an e-mail ... one of those that tends to be more of a nusience than anything else except this one continues on the vein of my last entry - a warning about Fosamax!   Here ya go, the technical terms:

Fosamax belongs to a class of drugs known as bisphosphonates, which are commonly prescribed for the treatment of osteoporosis in post-menopausal women. 

Over 20 million Americans have taken the medication which is manufactured and sold by Merck. While Fosamax is prescribed to improve bone density, prolonged use has the opposite effect in the jaw, leading to death and decay of the jaw bone. Although Merck was aware of this serious risk, they failed to warn patients and dentists, which could have reduced the impact of the painful and disfiguring jaw complication.

The above is from a class-action lawsuit lawyers site, I'm not going to say I condone the idea of suing to get compensation for this BUT the information goes along the same line as what my oral surgeon told me and is worthy of being passed along.  Personally, I'm going to re-think taking this drug once I have the dental work done, I think I can swallow numerous calcium pills per day!

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Actual date of Event:  12 September, 2006

Went to see the oral surgeon today to get a broken tooth taken out.  His staff reviewed my list of current medications then told me that they doubted I would get the tooth removed today.  Needless to say, since it had taken me a couple of months to get into the office, I was not a happy camper and let it be known.  They told me that they had been informed that if a patient was on Fosamax then they were to flag the folder and let the doctor know due to potential complications.

What I found out has me extremely concerned and makes me feel I have to say that if you are on Fosamax and go to a dentist who is willing to pull a tooth then RUN out of his office, and find a new dentist immediately!  Preferably one who prefers to err on the side of caution!

I had a tooth pulled back in early July, I was on Fosamax then and nothing was said to me.  My daughter had her wisdom teeth taken out a few days later.  Her mouth has completely healed but mine still feels sensative and not quite healed.  I chalked that up to the difference in the way the teeth were removed but have since found out differently.  Mine has not healed due to a side effect / complication from the Fosamax.  And actually, the fact that it is healing means I am lucky and it should eventually finish healing... apparently I'm lucky!

Fosamax does have a warning on the package.  It advises you to complete any dental work prior to starting the medication.  Apparently there have been recent developments that prove there are more complications than the package leads you to believe.  And, according to my dentist, not all dentists or oral surgeons are paying attention.

What happens is that Fosamax causes a condition with the bones that prevent them from healing properly so if you have a tooth pulled, especially on the jaw, then you run the risk of the cavity not healing and an infection setting in. Should an infection set into the area then you run the risk of losing bone mass and having to have surgery and you'll still be stuck with the area that won't heal.  DO RESEARCH the possible complications and make sure that your dentist is up on the latest warnings.  Fosamax has done a good job about alerting the dental association about these complications however from what I understand, not all dentists are listening.  This is one of those issues where it would be very smart to be your own advocate and ensure that you are off the Fosaman for at least several months prior to and after any major dental work. 

Me, I'd rather take extra calcium tablets and live with the possibility of a broken bone to prevent further damage from Osteoporosis than live with the possibility of losing my jaw to an infection!

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Actual Date of Event:  7 September 2006

Was in Dallas today to see the Plastic Surgeon at the VA clinic there.  I've decided that I will go ahead and do the surgery.... scarey but it would be soo much more convenient than wearing the fake boobs and would improve my appearance.... and possibly my self-esteem.  I don't know that that is necessarily an issue but I've been talking to people close to me who have pointed out that I've done some really "out of character" stuff since I had the mastectomy and they (not an opinion I necessarily endorse) think that these behaviors may be connected to the fact that I'm missing major portions of my body.

A date was set for the surgery..... October 25th 2006 - the date sounded familiar when the program director gave it to me but I couldn't remember why.  I finally did - more on that in a later post!  And after I talked to the doctor and the director about the possible complications and stuff they sent me for a chest x-ray and blood-work - let me tell you, they don't waste any time!!!  I was so flabbergasted that everything moved so fast that I didn't ask alot of questions I should have but will send an e-mail to the program director and get the answers in writing so I can review them and try to remember them.

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Actual Date of Event:  6 September, 2006

Got an e-mail today - ok, not actually today, it was received on 6 September but I was enroute to Dallas for another VA appointment so I didn't get it until the 8th of September but anyhow..... My application for the scholarship to the LIVESTRONG Summit was approved:

Dear Lezlee, Thank you for your interest in attending the LIVESTRONG Summit, which will take place on October 27-29, 2006, in Austin, Texas. Through the LIVESTRONG Summit, the Lance Armstrong Foundation (LAF) will lead a survivorship movement to broaden awareness and impact the unmet physical, emotional and practical needs of people living with cancer. We are pleased to inform you that your LIVESTRONG Summit scholarship application has been approved and the LAF will cover the following costs:   - LIVESTRONG Summit registration fee of $115   - Round-trip economy airfare from your city of residence to Austin, Texas    - Accommodations in Austin, Texas, during the Summit If you plan to attend the LIVESTRONG Summit, please reply to summit@laf.org with the following registration information by September 11: 1. Please describe any special needs we can accommodate at the LIVESTRONG Summit? - Hearing needs (Sign language) - Language needs (Interpretation and language) - Movement needs (Wheelchair access etc.) - Dietary needs - Other special needs  If other - please describe:   2.  About which of the following topics would you be interested in learning more at the LIVESTRONG Summit? - Fundraising for a cause - Acting as an advocate at the local, state or federal level - Working with volunteers - Organizing events - Writing and reviewing grants - Starting a 501(c)3 - Partnering with cancer survivorship groups or other community organizations, such as schools or hospitals - Improving access to support services - Improving communication with health care providers - Improving cancer survivors' lifestyles through nutrition or physical activity - Identifying issues in cancer survivorship, such as pain policies or access to clinical trials - Understanding and distributing resources of the Lance Armstrong Foundation - Other If other - what topics?   3.  Lunch preference: - Turkey - Roast beef - Vegetarian   4.  What does LIVESTRONG mean to you? You must book your travel and accommodations through the LAF's travel agency, On the Mark Travel by September 22. Travel and accommodations that are not booked through On the Mark Travel will not be reimbursed. You can reach On the Mark Travel online at www.onthemarktravel.com or by phone at 512.794.8800 or 800.618.MARK (800.618.6275). Be sure to tell On the Mark Travel that you are a LIVESTRONG Summit delegate. If you choose to not attend the LIVESTRONG Summit, please send an email to summit@laf.org stating that you decline the invitation to attend, along with your full name and phone number. Remember, you must register by September 11 by responding to the questions above by email at summit@laf.org or by phone at 512-279-8429. If you have not registered by September 11, you may risk forfeiting your delegate spot. Be sure to login at http://my.livestrong.org for the latest information about the LIVESTRONG Summit. Thank you for supporting the LAF's mission to inspire and empower people affected by cancer. We look forward to seeing you at the LIVESTRONG Summit! LIVESTRONGTM Lance Armstrong Foundation www.livestrong.org

© Lance Armstrong Foundation :: P.O. Box 161150 :: Austin, TX 78716-1150

Needless to say, I registered as soon as I read this!  What an opportunity to learn new ways to help others and get some great skills - this is something that, for me anyhow, is probably a once-in-a-lifetime event!

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Actual Date of Event:  18 August, 2006

I put in my application for the Lance Armstrong LIVESTRONG Summit a couple of months ago, and promptly forgot all about it.  Got an e-mail today that brought it right back to the top of my mind!

Dear Lezlee, Thank you for your application to participate in the Lance Armstrong Foundation's LIVESTRONG Summit. We are pleased to inform you that your application has been accepted, and we would like to invite you to join us as a delegate at the inaugural LIVESTRONG Summit. The LIVESTRONG Summit will take place on October 27-29, 2006, in Austin, Texas. If you plan to attend, you must register for the LIVESTRONG Summit by August 25 by following these steps:      1.  Log in to http://my.livestrong.org.  Your login information is: username: ******@gmail.com password: ***** You will be able to change your username and password after you log in.      2.  Click on LIVESTRONG Summit and then click on Register to fill out the registration form. You will have the option to submit payment for the $115 conference fee or apply for a scholarship. If you choose NOT to attend the LIVESTRONG Summit, please send an email to summit@laf.org stating that you decline the invitation to attend, along with your full name and phone number. Remember, you must register by August 25. If you have not registered by August 25, you may risk forfeiting your delegate spot at the LIVESTRONG Summit.  Thank you for supporting the LAF's mission to inspire and empower people affected by cancer. We look forward to seeing you at the LIVESTRONG Summit! LIVESTRONGTM Lance Armstrong Foundation www.livestrong.org

© Lance Armstrong Foundation :: P.O. Box 161150 :: Austin, TX 78716-1150

Needless to say, I registered!  Then, I got to thinking about the date.  This is the same weekend that the Susan G. Komen 3-day, 60 Mile is being held in Dallas and I'm signed up to be a crew member.  This would be a major conflict if it weren't for the fact that the 3-day will be held again next year and while I hope that the Summit will also be next year, I may not be invited to attend again so, the Summit is winning out.  Except finances won't allow me to do it so I'm going to apply for a scholarship and see if I can get at least the registration fee paid.  That will help me decide if I should cancel my attendance at the 3-day or not.

This is REALLY exciting!

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