Kirklin Clinic Head & Neck Cancer Support Group, Birmingham, AL
distributed by American Cancer Society
Pat Sanders, Editor
A Friend Returns
A message from Vicki Eorio (with Editor’s intro and comments)
Sometimes people disappear from your life and you miss them but don’t know where they went….or why? We had a very active WebWhispers member, Vicki Eorio, who, in the year 2002, wrote two articles for HeadLines. I knew she left the Northern US and she and her husband, Frank, moved to near Atlanta, where she had found a new job. I had hoped with Vicki being nearer to where I live that we could finally meet, face to face, but the new job wrapped tentacles around her and she was pulled into the government maw.
Her past articles may be found at http://www.webwhispers.org/pages/Headlines/HLIndex.htm
2002 Jan - Medicare/Medicaid Benefits [Vicki Eorio]
A great clear explanation of the rules at that time.
2002 Apr - Laryngectomee Father/Laryngectomee Daughter [Vicki Eorio]
Fascinating story of following in a father’s footsteps.
I’ll present a few of the less personal parts of her recent message:
I have not been in touch with many people and I can now only beg their forgiveness. Of course, I have all kinds of excuses but, more importantly, had a bit of a wake-up call. Was diagnosed with Barrett's syndrome which you, given your vast knowledge, know is not uncommon for us, especially when reflux has been part of our lives. And, in my case, part of the cause of the laryngeal cancer.
Of course I ticked the diagnosis off as something to worry about later but have been in enough pain that it is time for another scope and evaluation. Am scheduling within the next 2-3 weeks and plan to have the biopsies read also by MDA, where they saved my sorry tush after they found my biopsy of 6 years ago had been read as negative but was, in fact, positive for cancer. I always have any biopsy read by someone outside of whatever medical delivery system I find myself in. The cost is usually covered by insurance but there is no better insurance for either peace of mind or for decision making.
Anyway, long story that should be much shorter, I have worked an average of 50 to 60 hours a week for the past 4 years, always fearful of losing my job, and convinced the company would look for an excuse to get rid of me because of medical costs. But after this last round of problems, it finally got thru my thick head that my company gets tax credits for me! Imagine that. Female, well over 40, and legally disabled!
How stupid I have been! It wasn't until someone teased me at work after I said I worried about taking time off, that it had to be explained to me, "Vicki, they can't fire you! You are a nice lady who does more than her share and it would be called “law suit” because of your throat!". Don't know how many fellow members suffer from a combination of old Irish Catholic guilt with fear of loss of employment but this might be another thought for them......tax credits and protected class of employees!
Am sure I will return to work on Monday and continue to overachieve but have taken steps to put balance in my life. First was long talks with Frank and many tears, firing up my personal email, figuring out how to get a cheap lap top for email (rather than being locked in the back room which tends to make me avoid the PC because I am away from Frank and the animals), and not working weekends.
Someone at work said I was a "poster person" but that is not giving back to life, that is surviving. I am tired of saying that I have to pay back yet doing nothing. I look forward to doing any work for you that you need! Thought I would never want to write again after spending a year writing proposals for multimillion dollar contracts for my employer but soon discovered that it was a formula and if it worked once, it could work again. So once I did the first few, there was little creativity left. Plus, I want a way to give back. Read the greatest quote from Erma Bombeck, my hero for years. She said, "I would hope when I stand before God I can truly say that I am tired, I used up all the talents you gave me." Well, I am far, far from that! So if I can do something, love, bring it on!
There will be future articles. I wrote immediately and offered her a regular column in Whispers on the Web, which I also edit. I just received a message in answer and I could not be more pleased.
Pat, to have my own column? That would be a dream come true!!!! I sit every day in the awful Atlanta traffic, usually listening to books on tape but in the background, I am thinking, "Would this topic touch anyone? Could I make them laugh? Could it help?"
I love the way she thinks, researches and writes. I welcome her back into the fold and anticipate her joining the columnists at WebWhispers.org. Watch for her there.
Making the Right Treatment Choice
by David Blevins
Not long ago a terribly important question appeared on the WebWhispers e-mailing list asking how you know you are making the right decision for treatment when they give you various options and leave it up to you to choose?
Unfortunately, the answer is that you do not. That is just the way it is. We would have to be able to see into the future to be sure we were making the right choice--we would have to be omniscient and we mere humans must always fall short of knowing everything.
Medical people give us options and choices almost always when, from a medical point of view, there is no obvious single best choice. A few cynics might suggest that in some cases the doctors want us to make the choice so we do not sue them if things turn out badly. If there was only one choice you might be given this option: “This is the only treatment available for your medical condition. You can either choose to have it, or you need to make sure your affairs are in order since you will almost certainly not survive.”
When we are given treatment options, each alternative carries with it some set of benefits versus risks. For example, you can be aggressive with surgery, but lose quality of life or you may opt for a procedure which is less aggressive but carries a greater risk, including death.
There are no guarantees that you will not come to regret whatever choice it is that you make. Again, it is our inability to see into the future. You can be aggressive in hopes of preserving life, suffer serious side-effects and loss of quality of life, and then STILL have a recurrence or develop a new cancer which proves fatal. No guarantees.
We have known a tiny number of people who had larynx cancer and decided not to have the larynx surgically removed because they did not want to:
Lose their voices (they eventually did anyway),
Have to breathe through a hole in the throat (they eventually had to anyway when the cancer blocked their airways),
Preserve their ability to eat (but they eventually lose that, along with their lives).
We know of one local individual who is refusing to have his larynx cancer treated for these kinds of reasons. Since we know about how ugly his death is likely to be, we would love to try and convince him to have the treatment but patient privacy rights keep the ENT from telling us who he is. It will be a pity that he will almost certainly, at some point, regret his decision and wish, too late, to make the decision to have the laryngectomy surgery and live. Hopefully, he will change his mind before it is too late.
There are some societies where patents and their families are never involved in treatment decisions. I know of one modern western country which will not tell patients when they are terminally ill. It is thought more merciful to lie to them.
In the U.S. we have, for one reason or another, gradually moved away from the idea that “the doctor knows best”, and many medical facilities subscribe to a set of patient rights which include the right to be fully informed, although most medical people still try and size up the individual and his or her family for their capacity to be involved in these terribly important decisions.
There are some of us who want to know as little as possible and would rather put these decisions solely on the medical professionals (“Do what you think is best, doc”), while others of us want to be fully informed and involved. But if you are involved in treatment decisions you have to accept the consequences, including making a choice which does not turn out well.
Fatigue by Pat Sanders
When you hear someone say, “I’m tired”, “I’m exhausted”, “I don’t have any energy today”, do they mean, they just finished working in the yard and are tired from raking and mowing? Did they just play a fast round of tennis and are exhausted or did they just return from radiation treatments and need to go to bed for a while? Is this something that a little rest and refreshment will cure? Do you need a good night’s sleep or is this a different kind of fatigue. It is temporary or is it every day? Does it go away with proper rest, good food and sleep. It seems as though there should be another word for the kind of fatigue that lets you think that even though you want to do something, it is not worth the effort to do it. Do you weigh “want” against “physical ability” before deciding that you just can’t do something?
Wikipedia, the free online encyclopedia gives this meaning: “The development of fatigue is characterized by an initial, disproportionate increase in the perception of effort required.” Well, that sounds complicated enough. Let’s see if we can’t simplify that. If going out for a morning run was something you knew you could do but just had to make yourself get started, that’s not fatigue but if you knew you could struggle to the corner but would not have the strength to make it back, then you have reached the point of considering the effort required before you undertake any task.
Fatigue in metal is caused by continued vibration or stress until the strength of the metal fails. I think this happens to us, also. Illness, physical and mental stress, medications, surgery, chemo, and radiation reduce our abilities to deal with physical problems and we become tired, weary, lethargic, exhausted…fatigued. You have measured your energy and found it wanting.
Fatigue may be caused by depression. If you have nothing to look forward to, why get out of bed. It may be in reverse. Depression may be because you are so physically tired all the time life has lost its zest. Conversely, being so very tired all of the time can bring on depression. These can walk hand in hand and see-saw back and forth. Grief and loss of any kind, including the loss of your physical strength and mental acuity can bring on depression.
Let’s look at some of the reasons why we might be very weary.
1. As if surgery alone wasn’t enough of a stress on your body, most of us have had radiation and some of us have had chemo, in addition. That’s a triple whammy. It takes a long time to get over these but you should gradually get better.
2. Most of us smoked and some did not give it up until wheeled into the operating room. Physically, smoking deprived our bodies of vitamins and oxygen and leaves all kinds of bad things behind. Takes a long time to flush those out. There is a physical reaction of withdrawal and there is mental stress.
3. Many of us drank with some regularity and had come to either enjoy a daily beverage or to depend on it. Again, both physical and mental stress increase at having to give this up. Recreational drugs…same thing.
4. A number of diseases, such as diabetes, anemia, arthritis, allergies, acid reflux, and other physical problems can affect the way we are able to deal with cancer. Heart problems weaken you. Infections sap your strength. Cancer, of course, is fatiguing.
5. Medications. LOTS of medications or combinations make you sleepy and tired. Sometimes sleep is healing.
6. Blood tests should show if you are anemic or if you need extra minerals or if your electrolytes are out of balance. Doctors do not automatically test for hypothyroidism but, with us, they should because so many of us are hypothyroid. One little pill a day can return you to your old self if that is your problem. Ask for that test.
7. Being in pain is high stress. While there are unfortunate exceptions, most of us are not living in bad pain. There may be some things we can’t do anymore or can’t do as well as we used to. Pain wears you out.
8. Do the basics. Diet can be a problem. Eat well and eat right. Take a daily vitamin just to help. Get enough sleep and exercise within your capabilities. Stay hydrated and that is a big one. Dehydration leaves you feeling exhausted. Malnutrition leaves you weak. Be sure you get enough minerals and that electrolytes are in balance.
9. A direct link to fatigue is hypothyroidism. Please get a blood test. You may have to ask for it because it is not included in the regular routine blood tests. We have had doctors ask why you want that test. If your doctor asks, then tell him that a very large percentage of laryngectomees or larynx cancer patients have their thyroid damaged by surgery and/or radiation and you need to know if this is why you are so tired. I take Synthroid, 0.1mg which is the same as 100mcg, first thing every morning as I get out of bed. It is important to take it on an empty stomach since some other medications, foods or vitamins can interfere with the way the medicine works and you want to get the most you can out of the medication you have.
10. Check to see if you have yeast. It will give a craving for sugar and leave you with no energy because nothing in the digestive tract works right. Check the April, 2006 Whispers on the Web at http://webwhispers.org/news/apr2006.htm for my article with the "home" test for this...just to give you something to ask the doc about. Do you have a white tongue, bad breath, indigestion, gas? You may have excess yeast.
11. If fatigue is partly habit because you don’t use your muscles, then do some exercises. No, you don’t have to do push ups. Try some stretching exercises. There is a booklet you can download at http://www.webwhispers.org/pages/Headlines/HLIndex.htm . Scroll down to Massage and Stretching .doc file or .pdf file. There were written with the laryngectomee in mind.
Not easy to figure out, is it? OK, try looking at one thing at a time. Are you eating the proper foods. drinking enough water, getting the right nutrition and sleeping well? If so, then go to the next thing. Note when you feel the worst and put it on a list to tell the doctor. Sometimes it takes a little detective work to understand what is happening to you so start with a full medical examination with blood tests.
Here are some sites that might help you.
For cancer information call 800.ACS.2345 or visit our Web site at www.cancer.org
American Cancer Society in Birmingham: firstname.lastname@example.org
Bham: Pat Sanders, 205-980-8416; email@example.com
Kirklin Clinic Otolaryngology : 205-801-8456 FAX
Glenn E. Peters, M.D. Glenn.Peters@ccc.uab.edu
William Carroll, M.D. firstname.lastname@example.org
Nancy Lewis McColloch, Speech Pathologist ; 205-801-8460; email@example.com
INTERNET SUPPORT GROUP FOR LARYNGECTOMEES