Saturday, January 19, 2013

Lance.













 

“Let he who is without sin, cast the first stone”.

 
He was, in his own words, “an arrogant prick” who cheated and doped (apparently one of many in a sport that has some serious problems with doping).  This was wrong.   
When he felt threatened that his lies would be discovered, he lashed out and bullied and sued people.  This was really wrong.  
Is he a human being who has a lot of apologies to make and some serious atonement in his future?
 
 Yes.
Did he also survive stage IV testicular cancer (to his abdomen, lungs and brain) and lived to tell about it?
 
Yes.  
Is he also still a stage IV testicular cancer survivor who is an incredible athlete,  able to train and compete in grueling professional level physical competition?
 
 Yes.
You can't take that away from him.   It's not just about the drugs, those drugs alone did not make him an athlete.  Those drugs enhanced his performance and endurance (there is not enough EPO, testosterone or corticosteroids in the world that you could  inject into my big butt that would get me to that level of athleticism).
   
Has he raised 80 to 500 million dollars (depending on the report you read)  for cancer research and survivorship programs that have benefited  millions of  cancer survivors? 
 
 Yes. 
Did he give hope to millions of cancer survivors and put a very  much needed public “face” on the war vs cancer? 
 
 Yes.  
Did he make the U.S. government, NCI and our whole culture take a more serious look at the needs of cancer survivors?
 
 Yes.  
 
He was one of the first to remind the world that it is not enough to just "get through" cancer treatment, that you are allowed to live and thrive again too.  Survivorship has long been on the tongues of those in the oncology community, but Lance and Livestrong brought it to the forefront.
 
You have to take the good with the bad,  and for all the shock and outrage over what he did (what many other professional athletes are doing every day), he’s also done a lot of good and perhaps he is not done “doing good” in his lifetime.
 
The whole situation is sad, and fascinating at the same time.   A cancer survivor uses drugs that are all legally prescribed and commercially available to cancer patients everyday to "enhance" his performance aka to cheat.  It sounds like a movie.  
 
I think if you work in the "cancer world" or if you are a cancer survivor, your feelings are a little different than the average bear.  You're either: 
1) grateful for his contribution to the cancer world and so you can forgive him a little more easily, 
2) he was your hero because he survived stage IV testicular cancer and not because he won a bike race
3) you are most upset because you feel betrayed, as you are the people who needed to believe in him more than anyone. 
4) or....you feel a combination of all of these things.  
 
      In the Oprah interview, Lance says that he really never considered it cheating.   Oprah looks on disdainfully and incredulously and asks Lance why did he not "consider it cheating"?  And basically without saying it exactly this way, he tells the audience that almost everyone is using these drugs in international cycling, so that is why he doesn't consider it cheating.  In his own mind he felt that the playing field was level because everyone in cycling blood dopes. In a surreal way,  you can almost understand where he is going with this.    
Perhaps when all of the media hoopla ends, maybe there is something to be learned from this.  Perhaps this regimen of drugs and blood doping should be examined by scientists to see if it could benefit those with testicular cancer in the future.  How has Lance stayed so healthy and disease free after all of these years?   Or maybe they find that the side effects of this combination of drugs could cause his cancer to recur.  I don’t know and neither does anyone else right now, only time and science can tell.  It would be interesting to look at.
 
To quote Oprah, "Here's what I know for sure":
 
Too much of our government money has been and will be spent on this whole thing.
 
U.S. Postal Service?   Go deliver the mail.  Why the hell did our U.S. Postal service ever sponsor a cycling team?  They are the U.S. Postal service for God's sake.  You could have given those millions you spent sponsoring a freakin cycling team,  to hardworking, honest, employees or retirees for their dwindling pension fund.
 
Those USADA dudes want to be FBI agents.  You guys need to get your shit together and you need to treat all athletes the same.  Find an accurate test to test them ALL and then stick to it.  If they cheat:  fine them, revoke their title, punish them at the time of the incident.  15 years later and retroactive testing for stuff that you didn't know about at the time seems kind of crazy.  Take a blood or urine test the day of the race.  Allow 1 month for full processing.  If you didn't find it then, you move on.  If the athlete manages to outwit you by stopping doping 1.25 days before a race, then hire a decent toxicologist who can catch it or just give up.  Call CSI if you have to : )   This means cycling, football, basketball, baseball etc.  Everyone is tested the same way.  You go after everyone the same way.
 
Stop wasting your time and our taxpayers money hauling these athletes into congressional hearings.  Congress and Senate members....you have enough to do that you aren't getting done to worry about this stuff.
 
Or...do we just all accept that all professional athletes use drugs? 
 
Finally Oprah, you only have one decent show on your whole lame network.  Here is your highest rated show and you can't repeat it a few times for those of us who were working and didn't realize it was a two-parter?   You absolutely have to have on 10 straight episodes of something called "Usual Suspects"  Season 3????  Puh-leeze.
 
As for me, I will continue to have hope that Lance bounces back.  You cannot experience cancer and not learn something.  I believe deep down his work with Livestrong and this whole experience will make him a better person.  He was the founder, we cannot forget that.  You cannot spend time working with cancer patients and not become a better person.  I'll be pulling for you Lance.  I hope Livestrong which is truly a great organization can survive this.
 
Because after all....

  
 
 
 
 
 
 
 
 
 
 
 
 

 




 

 

 



 

Sunday, January 13, 2013

Hand and Foot (not the card game!)


Hand and Foot.  Yes, it is a card game.  If you add the word "syndrome" to
the end of it, it becomes a side effect of chemotherapy.


It's official name is palmar-plantar erythrodysesthesia. But even we medical types call it Hand/Foot Syndrome.


"What is Hand-Foot Syndrome (HFS)?

HFS is a skin reaction that appears on the palms of the hands and/or the soles of the feet as a result of certain chemotherapy agents.

HFS can start as a feeling of tingling or numbness in the palms and/or soles, which progresses to swelling, redness, peeling skin, and tenderness or pain. If there is no change in the treatment, the hands and/or feet can blister (which can then become infected), becoming very painful and interfering with daily activities.


What causes HFS?

No one knows for sure, but there are a few theories. The most widely accepted theory is that the small blood vessels in the palms and/or soles break due to use, pressure, or increased temperature, causing an inflammatory reaction and possibly releasing the drug into the area.


These are the most common chemotherapy culprits that can cause "Hand/Foot syndrome:

  • Capecitabine (Xeloda)
  • Cytarabine (Cytosar-U)
  • Floxuridine (FUDF)
  • Fluorouracil (5-FU, Adrucil)
  • Idarubicin (Idamycin)
  • Liposomal doxorubicin (Doxil)
  • Doxorubicin (Adriamycin)
  • Sunitinib (Sutent)
  • Sorafenib (Nexavar)
  • Pazopanib (Votrient)
  • Vemurafenib (Zelboraf)"
from:  http://www.oncolink.org/treatment/article.cfm?id=384&s=13&c=2



Things to try to prevent hand/foot syndrome:

Stay well hydrated.  Drink plenty of (cool) fluids.

Avoid tight clothing.  You want to decrease the amount of friction on the skin.  Loose socks, gloves, pants at the waist.  Avoid restrictive clothing, as that applies pressure and increases friction.

Several articles I read warned about NO DISHGLOVES WHEN WASHING DISHES (the heat and the friction in addition to the hot water).  Ladies, now is the time to get that new dishwasher!!  It's for medical purposes!!!






Cool Compresses to areas where clothing might bind you or to palms of hand and soles of feet.  Remember to always have fabric between the cold compress and your skin to prevent skin damage.
This is suggested in some of the literature.  Not too many of my patients have it bad enough to want to try this.  It's an option.




Avoid staying on your feet for long periods of time.  

Put a footrest under your desk if you are work.  If at home, put the puppies up!  Elevate your feet.





 Avoid leaning on your palms or pressure on your palms for too long (chopping, kneading etc).

Avoid blazing hot showers.

Check the soles of your feet everyday when you get out of the shower.  Even if you have to look at them in the mirror.  If you get any tingling, look at them right away.  It could be neuropathy from the chemo causing the trouble, but on the soles and palms it is most likely HFS.

Keep your skin hydrated.
Before you go to bed:
In the palm of your hand mix a big dollop of "moo cream" or any type of  thick body cream with a dollop of Aquaphor to mix it together and gently apply to your feet and put on a pair of loose soft cotton white socks so it will help it absorb and keep it from getting all over your sheets.
After your shower in the a.m. (try to avoid really hot showers)  do the same thing.  You may have to buy some extra socks as you might ruin a few pair.  They also have aloe socks and chenille  soft and comfy socks  for hanging around days. 
 
Make sure your hands get similar treatment.  Although you will have to reapply several times a day.  At night, try putting on those cheap soft white loose cotton gloves that you can buy in any drugstore (check their diabetic supplies section) and slather cream mixture on your hands, especially palms and let it absorb overnight. 



classic signs of hand/foot syndrome






















Classic hyperpigmentation/discoloration from Xeloda seen in our African American patients.






This should be in every cancer patient's toolbox whether you have hand/foot or not.  You can use it for lips, heel crack, dry skin.  Aquaphor is the BEST!!  They have a generic at Walgreen's which is cheaper, but I'm not crazy about the smell of it vs the original. (Aquaphor can be pricey....about $10 per large tube, $20 for a small tub of it).  As the beautiful Elaine says, good old Vaseline is also an option. 




I call this "moo cream" since I can never remember the actual name of it.  Udderly Smooth.  You can get this online at www.amazon.com, www.drugstore.com, most online pharmacy sites.







Elizabeth Grady (we love them!!!) makes yummy creams and lotions for your skin.  My beautiful sister in law Susi loves this one for her heals. http://www.elizabethgrady.com/10Browse.asp
 
 
Channel your inner Michael Jackson!!   Put your potions on and then a white cotton glove (loose fitting).





 
 
Here's hoping that you avoid Hand/Foot syndrome.  If you do get it, please tell your MD/nurse asap.  They have some products to help and they will want to consider cutting your chemo dose down a bit if it worsens.
 
Hope this helps!! 

 
 

 


 

 
http://www.caring.com/articles/treating-hand-foot-syndrome

photos (in addition to google images):


http://lisabadams.com/2012/12/08/update-1282012/
http://www.cancernetwork.com/complications/content/article/10165/63163

http://www.google.com/imgres?start=667&num=10&hl=en&tbo=d&biw=1360&bih=643&tbm=isch&tbnid=z_VqeSHxBUGAPM:&imgrefurl=http://www.thekitchn.com/filling-the-dishwasher-do-you-108457&docid=fEgDdX-NLfwsTM&imgurl=http://i-cdn.apartmenttherapy.com/uimages/kitchen/2010-02-11-Dishwasher.jpg&w=540&h=360&ei=-iDzUOLBDMSZ0QHpmYDwDA&zoom=1&iact=hc&vpx=545&vpy=132&dur=2010&hovh=183&hovw=275&tx=99&ty=201&sig=103431169854095616357&page=20&tbnh=134&tbnw=199&ndsp=33&ved=1t:429,r:86,s:600,i:262

Sunday, January 6, 2013

Book Club



Last month in the support group that I facilitate, I thought it might be a good change of pace to have a "book discussion night".   I suggested a book that a group member had actually given to me (that someone had given to her).  Some of the women enjoyed the book.  Some started it and had to put it down.  Some objected to having to discuss it at all (based on its' depressing title), and some were just not interested in reading it at all.  

Book Night was an excellent reminder for me that everyone has different styles and ways of coping with their cancer (and with life!).  Some of the group members are going through treatment and don't want to read anything "cancer related".  Absolutely valid point.  Who can blame them?  As important as it is to talk about their cancer experiences, sometimes it is just as important to be able to NOT talk about it too.  Sometimes you need a little escape from "Cancer Island".

Other members of our group want to devour everything they can get their hands on that is written about cancer and there can never be "too much" information or too many books read about cancer.  This is fine too!  Whatever works for you!

Since this is a blog for cancer survivors and their loved ones, my goal has always been to just tell you what I like, and what works for my patients and the great team of professionals that I work with.  You may absolutely disagree with me and that is totally cool. We are all different, with different needs, and preferences.  One size does not fit all (tell me about it!!).

Also, it depends on where you are in your cancer journey.  A book that might appeal to someone who is newly diagnosed is different than one that might appeal to someone who has had a recurrence.  This same goes for someone who has metastatic disease.  Or those who might be getting ready to enter the palliative or hospice phase.  My point....not all books (or resources) are for everyone. 

Who am I to give reviews on anyone else's work?  I have spent a fortune on cancer books to share with my patients and their families.  I have read more "dog" cancer books than I can say.  If I can spare one single cancer survivor from spending $15 on a bad book, so they can save that money for something else (like a bad movie!!) then that will please me.

In two prior posts I have told you about two of my all time favorite cancer related books:  "Between Me and the River" by Carrie Host and "Cancer on $5 a Day" by Robert Schimmel.   A list of my favorite cancer related books sits on this blog under the "My Favorite Things" column.

Keeping all of this in mind, I will now give you a quick review of a book that I just read today and two that I am in the process of reading. 


The End of Your Life Book Club by Will Schwalbe

This is a book about a son and his mother (who has been diagnosed with pancreatic cancer) and how they find a way to connect and communicate through her 2 year illness by reading and discussing books and forming their own special "book club for two".  Both are lifelong avid bibliophiles (he is in the publishing business).   Their  "book club" is really a way for them to spend quality time together, and a way for both of them to communicate with each other as they both face the challenges of a pancreatic cancer diagnosis and its' treatment. 

Many of the words they find difficult to speak are more easily shared with each other in the context of the discussion of the books they are reading.  Some of the themes of the books they choose to read, lead to discussion by the duo of more serious and personal heartfelt emotions. 

There are parts of this book that I loved, and parts that I found to be extremely irritating.

My first thought is that I just wish that I could have met the mother in this book.  She was an extremely impressive individual and I love that her son honors her by telling the story of her life.  He loved his mother and he wants you to get to know her through his book.  

I love that they used this unique approach to communicate with each other in the final 2 years of her life.  As you read the book, you see that they really have communicated through their informal discussions of books, all their lives. 

I can see how this might be a "doable" way that other cancer patients might find it easier to share their feelings with their own family and friends.  Not everyone is a voracious reader, but I can also see how just getting together and quilting together or knitting together etc. could have a similar outcome, depending on if it is an activity that you both enjoy.

I found myself highlighting paragraphs that I loved which means I liked the book.

What I found a little annoying were the constant explanations of the different books.  It was like reading 100 mini book reviews interspersed with the important stuff.  Yes, I get that is what the major point was, and that it was important to do,  but it stressed me out that I will never have time to read half of these books!!  Also, I felt that part made the book flow a little less smoothly. 

But the gist of the book, I really liked the way this couple chose to spend their precious time together.  The book discussions were really the conduit for sharing their feelings.  Just as everyone will react differently, this is what worked for them.

This book is on the Amazon list of best books of 2012.  



Ballerina by Bob Carey

This is a coffee table photography book.  I LOVE IT!!


Bob Carey is a professional photographer.  His wife is a metastatic breast cancer survivor.  To make her laugh, he started taking photos of himself dressed up only in a pink tutu in various locations around the world.

Let me be clear here, Bob Carey is no male model (although, he is quite adorable!!).  He is kind of your average, hairy, stocky-Joe dressed up in a pink tutu, photographing himself while performing some very non-Baryshnikov-like ballet leaps and jumps. 

His photos are actually quite beautiful.  They made his wife laugh.  She shared them with other patients in the chemo clinic where she is treated and the pictures made them smile.  So, now they sell a book with all of these pictures and the net proceeds go to  breast cancer organizations including Cancercare.org (a GREAT organization) and Beth Israel (nyc) Department of Integrative Oncology Fund.

Per Bob, "During these past 9 years, I've been in awe of Linda's power, her beauty, and her spirit.  Oddly enough, her cancer has taught us that life is good, dealing with it can be hard, and sometimes the very best thing-no, the only thing- we can do to face another day is to laugh at ourselves, and share a laugh with others." 

This book is pricey at $50.  But the photography is beautiful (see some photos below) and it is for a good cause. 

Mr. Carey has given away many free copies to hospitals around the country too.  I LOVE THIS GUY!!! 


But I Just Grew Out My Bangs (A Cancer Tale) by Katya Lezin

I am only about 75 pages into this book, but I like the author's humor and writing style already.

Here's the description of the book from Amazon.com.  I will come back to this blog posting after I have finished the book to give you an update on whether this book is as good as its' first 75 pages!

"In this frank and witty memoir, Katya Lezin chronicles the way her world was turned upside down by an ovarian cancer diagnosis and the year of treatment that followed. Interweaving the e-mail updates she regularly sent out during her journey, newspaper columns she wrote for The Charlotte Observer, and her own candid reflections on her experience, Lezin highlights the many physical hardships and indignities she suffered as a result of her surgeries, treatment and recovery, and the emotional toll this battle took on her and her loved ones. But Lezin's Ovarian Odyssey is ultimately an uplifting account of the many triumphs she experienced along the way, and serves as a tribute to the power of love, friendship, humor and the indefatigable human spirit". 


Hope one of these books works for you!!! 




   




  




All Photos by Bob Carey from "Ballerina"