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Posts Tagged ‘cancer’

Update and Happy New Year

January 2, 2011 6 comments

Hello to every one of my regular followers and new readers! So sorry it has been so long since I updated my postings, a lot happening lately – most of which has been good. I did recently have a biliary stent replacement and developed acute pancreatitis as a result of it, so spent last couple of days in the hospital. Bummer way to spend New Years’ Eve I tell you!

I just wanted to touch base and say I am working on a new article on – what else – biliary stenting and the complications that come with it. Need to finish some research before I am ready to post so keep an eye out, I will post soon.

I wish everyone a Happy and Healthy New Year in 2011. I have been awed by the tremendous outpouring of support from the blog community, patients and caregivers alike. It is very humbling and I am so glad my posts, articles and links have been a help to so many. Thank you!
Mark

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One Year on Chemotherapy…

August 15, 2010 15 comments

Anniversaries can be bittersweet events.  On one hand a wedding anniversary, for example, can be a celebration of undying love, patience and steadfast devotion that says “Hey we stuck it out, through good times and bad, through temptation and frustration but we persevered – and we made it work.  Here’s to us!”

On the other hand, the anniversary of a loss – whether it be of a loved one, a beloved pet, a career – can be a time when a nearly healed scab gets ripped off to reveal raw, painful emotions which were thought to be finally under control.

I am celebrating an anniversary of sorts myself today:  I have been on some form of chemotherapy for my cancer for one year now.  365 days.  I have mixed emotions about this, but when I weigh it all out, I conclude that I am truly grateful to be able to celebrate this particular anniversary. 

It was a little over 12 months ago when I was diagnosed with a challenging cancer;  I was actually unsure at diagnosis if I would be around to celebrate another birthday.  Thankfully,  I passed that milestone this last week too, and in pretty good shape, all things considered.  For this I am extremely grateful. 

When I reflect back on this past year, I can’t help but observe a few things about my cancer journey that I feel I should share with others in a similar situation, especially those just recently diagnosed.  Maybe someone without cancer can benefit from these pearls as well.

  1. Don’t Sweat the Small Stuff.  Really.  I know it may sound like a cliché, but I speak with some authority here.  Most of the stuff we worry about on a daily basis never materialize.  Most problems that we anticipate have a way of sorting themselves out before they ever present themselves to us.  Worrying about a bunch of stuff that you can’t control only serves to stress you out and shorten your life – stress hormones are a bitch on your body.
  2. If you don’t already, you’d better learn to appreciate and respect your family.  They are the ones that will be with you through the miserable times, the chemo, the radiation and for some, the humiliation of having someone take care of basic hygiene for you when you’re physically unable to yourself.  Believe me, not many of your work buddies will volunteer to come over and flush your PICC line for you (or worse).  I have seen it first hand in my own family and experienced it myself; Parents, kids, siblings, aunts, uncles and cousins literally coming out of the woodwork and stepping up to the plate to assist. It may not be in the way you always need, but they’re trying and doing what they can.  They’re there for you.  They have a sense of commitment that most others can’t fathom.
  3. Along those lines, a cancer diagnosis has a way of revealing who your true friends are.  Close friends who you thought would be there for you and thought actually gave a crap mysteriously become unavailable, stop calling or emailing,  Perhaps they can’t deal with it, perhaps they don’t know what to do, or say – I am not sure the reason.  On the other hand, friends and co-workers who I would have considered mere acquaintances suddenly extend themselves in ways you couldn’t have anticipated and really come through.  Close friends become closer and consistently show love and altruism beyond comprehension  It is truly amazing.
  4. Stop to appreciate the simple wonders around you.  As westerners in the dawn of the 21st century, many of us seem to have our priorities all screwed up.  We race around like crazies, trying to multi-task during every waking hour of the day (and sometimes when we’re not awake), feeling very industrious yet not really moving forward.  My suggestion is to take some time to appreciate the beauty and wonder of nature around us (even in a crowded metropolis, a city park can be a wonderful sanctuary).  Technology has certainly made our lives easier in some respects (ease, speed and access to unfettered communication), but it has also isolated us from each other.  If you’re so pre-occupied with being entertained 24 hours a day that you must wear i-pod headphones everywhere you go, you’re really missing out on a lot of potential fascinating interaction with others.  Texting is not a high form of interpersonal communication.  Turn the technology off for a few hours each day and enjoy the wonders around you – you may learn something in the process.
  5. Hopefully a cancer diagnosis will not have to be the impetus to do something meaningful for others.  Volunteer, help a neighbor, reach out to a recent grad and give them some advice, see how you can assist someone less fortunate.  I’ve found that by changing my focus on others it has allowed me to tolerate my cancer and the various adverse events that come with both the disease and the treatment much better.  Not an easy thing to do when you tossing your cookies after chemo, but at the very least, it takes your mind off of your own problems and helps to put things in perspective, especially when you’re helping others who have it much worse.  Believe me, there is always someone who has it worse.
  6. Finally, try hard not to let your diagnosis control your life.  Easier said then done at times, but trust me when I say if you let your cancer control you and what you do, then you’ve already lost the battle.  You have to fight like hell to beat your cancer.  Be your own advocate, research treatments, push your medical team, make up your mind to control the disease, don’t let it control you. I know it must be tempting to use a cancer diagnosis as an excuse not to do things, to give up, to submit.  If you do, you’ve begun to let the disease control you, instead of controlling the disease.

Well that’s my sermon for today!  Ha Ha.  Some of my regular followers probably wonder what’s gotten into me, since most of my posts tend to be resource or issue oriented advocacy posts, and not your typical blog fare.  I promise to be more diligent in posting research and resources in the near future; I’ve been busy living.  In the meantime, Happy Anniversary to me.  I’ve got a life to live.

Support Groups

April 7, 2010 2 comments

Support GroupHello and my apologies for the long week+ without any posts…The topic for this week is Support Groups

Most hospitals – even local and regional medical centers which are not affiliated with teaching centers – have at least one or two cancer support groups.  These are for the more prevalent cancers like lung, breast, colon or prostate.  Few hospitals have support groups for liver cancers and fewer still for cholangiocarcinoma.  So what is a cholangiocarcinoma patient or family member to do?

Well, there are several options.  First, you can try to join a general Cancer group if one exists.  If it is a larger Regional Hospital, they may have a GI Cancer or Liver Cancer Group for all types of liver CA (Hepatocellular Cancer, Cholangio, etc.) or a PanCan group for Pancreatic Cancer;  While not the same, many of the chemotherapy regimens and surgical techniques used in treating Pancreatic Cancer are similar to those employed in treating cholangiocarcinoma, so there are some similarities there.

An alternative option is to form your own Support Group.  This may sound like a daunting task but it is really do-able and just takes some leg-work on your part.  Let me address a few FAQs to start with:

What exactly is a Support Group?   A Support Group is a small gathering of patients and caregivers who share common experience with this disease; People who truly understand what you’re going through and can relate.  Read more…

Help for Underinsured Patients!

March 17, 2010 1 comment

PAF Underinsured DirectoryPatient Advocate Foundation Launches National Underinsured Resource Directory

NPAF’s sister organization, Patient Advocate Foundation, has recently launched a ground-breaking new online tool called the National Underinsured Resource Directory  which is intended to help underinsured individuals and families locate important resources and seek alternative coverage options or methods to cover their healthcare needs.
 
The National Underinsured Resource Directory is available through an online interactive tutorial program, and a written publication that supports the program.  The comprehensive online tool will help underinsured Americans faced with high out-of-pocket costs locate valuable resources and action steps to provide financial relief.
 
“We are pleased to provide this valuable tool to the millions of Americans facing problems securing critical medical care services due to their inadequate health insurance benefits,” said Nancy Davenport-Ennis, Founder and CEO of PAF.  “Patients across the country will be able to gather information from the Q&A and action steps we have put together, improving their access to the quality care they need and deserve.”
 
NPAF and PAF encourage you to utilize the National Underinsured Resource Directory if you are underinsured and struggling to meet out-of-pocket obligations.  In addition, please share information about this valuable resource with your family and friends who may find it beneficial.
 
Patient Advocate Foundation is a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability relative to their diagnosis of life-threatening, chronic or debilitating diseases.  NPAF and PAF were founded on the principle that health care is a basic human need and shared social responsibility.  If you are a patient in need, for more information visit http://www.patientadvocate.org/ or call PAF toll-free at 1-800-532-5274.

Note: In the spirit of full and open disclosure, I must state that in addition to currently battling my own cancer, I am a volunteer State Policy Liaison with the National Patient Advocate Foundation (NPAF),  the sister organization to PAF. 
NPAF is a national non-profit organization providing the patient voice in improving access to, and reimbursement for, high-quality healthcare through regulatory and legislative reform at the state and federal levels.  NPAF translates the experience of millions of patients who have been helped by our companion, Patient Advocate Foundation, which provides professional case management services to individuals facing barriers to healthcare access for chronic and disabling disease, medical debt crisis and employment-related issues at no cost.

PICC or PORT Line for Chemo?

March 10, 2010 10 comments

To PICC or PORT, that is the question:” With apologies to the Bard of Avon, my topic today is to discuss some of the differences between a PICC line and a PORT for chemotherapy. 

A PICC is a Peripherally Inserted Central Catheter.  It is essentially an intravenous (IV) line that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access. It is similar to other central lines such as Central Lines or Ports as it terminates into a large vessel near the heart (the superior vena cava). However, unlike other central lines, its point of insertion is from the periphery of the body and usually a vein in the upper arm is the most common insertion point.

Unlike a standard IV line which is inserted in an arm or hand vein and terminates after only a few centimeters, A PICC line is usually inserted in the arm using ultrasound to guide the specially trained nurse or technician who is doing the insertion.  PICC lines differ from peripheral IV access but are similar to central lines in that a PICCs termination point is centrally located in the body allowing for treatment that could not be obtained from standard periphery IV access, such as chemotherapy, prolonged antibiotic treatment or TPN nutrition.   Read more…

Atlanta Area Cholangiocarcinoma Patient Support Group

March 4, 2010 1 comment

         

Peach State Support Group

New Atlanta, Georgia CCA Support Group

 

I realize that this is specific to those living or having treatment in the Atlanta, Georgia area but wanted to help get the word out about a new support group that will be meeting at Emory University Hospital in Atlanta on the third Friday of each month beginning in April.         

It is open to cholangiocarcinoma patients and their family/caregivers and will be moderated by a member of the Emory University Social Work Team.  Support groups are a great way for patients and caregivers alike to get together and talk about issues they face in fighting the disease, dealing with treatment and coping in general.        

Here are the details:        

What:   Cholangiocarcinoma Patient & Caregiver Support Group        

Where: Emory University Winship Cancer Center, Room C3018      

The Winship Cancer Center is located at 1365-C Clifton Road NE, Atlanta, GA 30322. Click here for directions: http://www.mapquest.com/mq/7-IGP9Xkevn*uyHkksF738        

When:   Third Friday of Each Month (Starting April 16th) from 12:00noon to 1:30pm        

Contact: Leave me a comment or email me if you need further information.

Nutrition, Cancer and Chemotherapy

February 25, 2010 3 comments

My guest blogger today is  Ms. Tiffany Barrett, a Clinical Dietitian at the Winship Cancer Institute of Emory University in Atlanta, GA.  Ms. Barrett writes about the importance of maintaining weight and adequate  protein intake while undergoing chemotherapy.

Maintaining adequate nutrition is an important part of your cancer treatment.  Eating a variety of foods will help you obtain the proper amount of calories and protein.  Getting enough protein is important to the healing process as your body uses protein to rebuild tissue.  Protein requirements are often higher in cancer patients because of the change in protein metabolism.  Without adequate protein the breakdown of lean body mass is increased from the demands of the tumor and treatment.  Loss of lean body mass can lead to inability to heal, decreased strength, weakened immune system, loss in independence and decreased quality of life.  And even if you are overweight, losing weight is not healthy or recommended during treatment.

 Try eating every 2-3 hours meals of protein and calorie dense foods.  Excellent protein sources include fish, poultry, eggs, dairy, legumes and soy.  There are several commercial oral supplements on the market to help provide higher calories and protein.  Add protein to foods by mixing protein powder or powdered milk to beverages, casseroles, soups, mashed potatoes or hot cereals.  Make your own smoothie or milkshake by adding whey protein isolate or egg protein powder.  These protein supplements can be found at most drug stores and nutrition stores.  To add variety and increased nutrition mix, blend with fresh or frozen fruits.  Good snack choices include peanut butter, nuts, dried fruit, cheese, yogurt and protein bars.  Think of food as the fuel necessary to get you through treatment.

Tiffany Barrett MS, RD, CSO, LD 

Clinical Dietitian

Winship Cancer Institute of Emory University