HEADLINES
Pat Sanders, Editor
Kirklin Clinic Head & Neck Cancer Support Group, Birmingham, AL
distributed by American Cancer Society
February, 2001

Beyond the Arctic Circle                                                                                     Belva Pearce Anchorage, Alaska

I go around to the different schools here in Alaska and talk about the dangers of smoking.  As far as I know, I am the only one doing this in this area, so when I was asked if I would like to go to the bush to speak at a school, I said,  "Sure."

Shortly after, I received an e-mail from a school in Venetrie asking if I would be willing to come there and speak if the elders of the village agreed.  I replied asking where Venetrie was located and for some information about the village and school.  The answer was that this was a village of about 250 people, who were all related.  The school of 50 students covered all12 grades.  The village was across the arctic circle and there were no cars, restaurants or movie theaters.  There was a village store and everyone used snow machines or dog sleds to get around in the wintertime and four-wheelers in the summer. 

I agreed to go but my husband, Herb, said he did not want me to go alone and he was willing to pay his own way, since the school was paying mine.  The next e-mail told us to bring sleeping bags, pillows, some food, and to dress warmly as the temperature sometimes got down below -50 degrees.

We left Anchorage at 7AM with next stop at the Fairbanks main airport.  From there we had to go across town to a small airport where we were to get a smaller plane to take us to Venetrie.  We were told that we would be flying on a plane that would hold 6 people, plus luggage, but, first, we and our luggage had to be weighed. As we got on the plane, we were told to leave our coats and gloves on, since the heat was not very good.  He was not kidding.  I thought I would freeze.  Our first stop was Fort Yukon where everyone got off except Herb and me.

(Fort Yukon lies 8 miles north of the Arctic Circle on the Yukon River. There are roughly 800 inhabitants in the village, predominantly Athabascan Indians.  They pride themselves in living a subsistence lifestyle, off the land and the river. Fort Yukon is accessible by air and  boat only) Ed.

The pilot asked if we were "sure" we wanted to go to Venetrie, since he had only taken white people there a couple of times.  Herb and I just looked at each other as we wondered what we had gotten ourselves into!

About two hours later, the pilot said we would be landing soon in Venetrie and warned us there was no airport.  We landed on a dirt road as we were told that all flights were made in daylight.  If there should be an emergency when dark, the snowmobiles lined up to light up the road.

It looked as though everyone in the village had come out to watch the plane land, and as we got off of the plane, a snowmobile came to meet us and take us to the school, about a mile away.  The driver loaded our things on the machine and told Herb to get on with him.  I was just thinking they were going to leave me behind when a dog sled came and they told me to get in the basket.  I did and off we went to the school, which they heat with oil brought in by plane every summer  It was very modern and had everything that the large schools in Anchorage have.

We met the five teachers who teach a variety of subjects to the students and were told we would be sleeping in the building that used to be the old school, where two of the teachers had apartments.  We were taken to our room, which had two sofas in it and that was all.  One of the teachers who lived there asked if we would have dinner with her and another teacher. We had soup & sandwiches, made with canned meat as everything has to be brought in by plane so they use a lot of canned goods.

The next morning at school we had eggs and bacon for breakfast and were told we would be having lunch there with the students, which was soup and sandwiches again with canned pears. They used powdered milk and added water to it. They had just gotten a machine that would let them add chocolate to the milk as the kids were not drinking the plain milk.

The four class rooms had 3 grades each.  We had  just started talking to the students about the dangers of smoking when we were asked if some of the adults from the village could attend.  I was very happy that maybe we could influence some of them to stop smoking by telling them of the dangers.  In this village, they have a high rate of lung cancer and 23 of the 50 students smoked.  They were even allowed to smoke outside the school  two or three times a day on ten minute breaks.  The villages have a big tobacco problem with their teens.  There is not much to do in the village and if they want to date or marry, they must go to another village as everyone in this one were related.  The younger children said their big thing was to go to Fairbanks once a year, eat pizza, see a movie, and look at cars.  Some had never seen a car or a movie.

We came home that afternoon. The school radioed the airline and they said the plane would be there at 3:00, so we met the plane on the road again to come home.  They must always call to see if the plane is coming as lots of time it is canceled because of weather.

The teachers liked my talk to the kids and asked if I can come back again. When I got home I received a lot of letters from the children asking more questions about smoking and if WE could come again. I answered all their letters and am sending updates on smoking to the school.  This trip was so satisfying that I plan to make more trips into the bush this year.                         

                                                                  "Herb & Belva Pearce" <rookiest@gci.net>

 

First, You Get Their Attention                         

Pat Wertz Sanders   pat@choralmusic.com

I can't tell you how many times I have been to a doctor and left the office thinking I had told him what was wrong with me but feeling dissatisfied because of the answers I "didn't" get.  Was he not listening or was I not speaking clearly or did  I not get his attention?  I could go back 50 years, when I didn't know better, for examples, but even in recent times, this has been a problem. This was before my days of doing research to find answers and questions about medical problems on the Internet.  Let's face it, it was before there was an Internet.

Did my doctor understand what I said?

About 15 years ago, I went through a spell of having swollen, painful, knees.  Being on my feet often in my job wearing high heels during the daytime and working in my house to get it ready to sell in the evenings… cleaning, packing, carrying, moving furniture while wearing terry slides.  I was told to put my feet up  (when?); I was told lots of people your age have this problem (of course, lots don't!);  I was told there was a surgery that could be done or that it was just water on the knee or I should try a chiropractor or a sports medicine specialist.  My pain became so intense with any stress on my knees that in order to sit down, I had to choose a chair that had arms so I could hold onto them as I  eased into the chair, carrying most of my weight with my arms, not my knees.  I could not get out of a low chair unless I could get forward on the chair and use my arms for strength.  I even bought a house that had all of my living space on one floor because I thought I would never be able to climb stairs with any regularity.

All this time, I thought I was making myself clear to my doctors, but apparently I didn't have anyone's attention. We describe pain differently and perhaps saying that my knees hurt did not come through to the doctors as my having such pain in my daily life that it was changing my whole lifestyle.  Finally, one day, I got off of the table at the chiropractor and looked down at my knees.  I had on one of those short gowns and my knees showed.  I demanded that he look at my knees in a standing position and how large they were.  I told him that I needed to know what was wrong and what to do about it.  I remember saying that I had never had fatty knees and, look, they were like melons!  He looked and listened and then said he had one more thing to try and brought back into the office a couple of boxes containing solid blocks of foam for me to step in.  I did and we had molds of my feet. He sent these off for customized arch supports.  The first day I wore them, I could feel an immediate easing of the pain.  While my knees will never be really good again and there are a lot of things I can't do, I can walk, sit, and climb stairs easily.

 

Nodules or Throat Cancer

Seven years ago, I went through a similar problem with my throat cancer. I had the hoarseness that wouldn't go away and I cleared my throat all the time.  My doctor thought it was medication, an ACE inhibitor, so we changed it.  When that didn't help, I was sent to an ENT, where we tried voice rest and guiafenesin, then he sent me for voice exercises and therapy.  It was 18 months after my 'original' complaint before the ENT did a biopsy and we knew it was cancer.  He sent me for radiation, and finally, to Dr. Peters, Chief Otolaryngologist at UAB, who performed a laryngectomy 2 years after I went in to say, "There is something wrong with my throat."

Would it have made a difference if I had insisted on an early biopsy?  Could I have damaged my vocal cords with a biopsy if it had not been cancer?  If they had found the cancer a year earlier would the radiation have worked?  We don't ever know what was on the path we didn't take. I hear this same story from others and read it all the time on WebWhispers, so what can we do to make our doctor's understanding of our problems as clear as possible?

Start With Questions

Start with keeping a file folder for your medical records. Ask for copies of tests so you have a continuing record, even if you don't understand the test results right now. Don't take the whole file to the doctor's office but before you go for the next examination, be sure to go over the file and make some notes on questions you wish to ask.  Keep another folder to take with you on your doctor visits that includes these questions and, anytime you think of something you want to ask the doctor or other medical professional, write it down.  If you are healthy enough and far enough past your cancer that you are only having yearly checkups, then you have just that one chance every year to ask the doctor and you certainly won't call him back to say, "By the way, I've been tired a lot lately." or "I'm eating Tums all day, every day, because of indigestion."  You are not going to remember all you wanted to ask without having some organization. A note that something is not what it should be could lead your doctor to recognize a problem developing.

Do Your Homework

If you see an article in the newspaper, or look up something on the Internet, about a new treatment for a condition you have, cut it out, and put it in your "Questions" file.  If someone writes an article in HeadLines or a message in WebWhispers that you want to ask your doctor about, print it out.  Your doctor is not going to read all of this but it will remind you to ask him and, if he is curious about it, he may look at what you have brought, especially if it is an unusual problem and the message is from someone who has been through the same problem you are having.

Prepare A Simple List

Get all of your notes and questions together and prepare an outline that will remind you of what you want to ask about or discuss.  Make a copy for your own files and one to hand to the doctor.  The simple words, "Tums – daily" will remind you to explain what has been happening to you or when he glances at that, it will remind him to ask you, "Why the Tums so often?"

Be sure to tell him if you have had any bleeding or odd bruising, moles that look different, lumps you want him to check out.  Let him know if you have developed any new problems, been diagnosed with a new condition or been put on medication by another doctor.

As a laryngectomee, especially the first year, ask questions about your daily care, and about the occasional bleeding or coughs and colds.  Let him know if you notice anything unusual: wheezing or difficulty breathing, swallowing problems, dryness or pain.  That doesn't mean there is anything wrong, but he may tell you what he wants you to do about it and he may, for instance,  take a more careful look in your throat to see if your esophagus is narrowing, if there is anything obstructing it or if you just need to get accustomed to eating more slowly.  Some things call for special visits, such as your stoma shrinking, or excessive bleeding, but, right now, we are concerned with your follow up visits and regular check ups. 

Changing Doctors

All of these files and notes will come in very handy should you have to change doctors.  It is traumatic to have to fill in paperwork from memory when you go to a new medical office.  You may be sent to a specialist, your doctor may retire, your insurance plan may not cover at that clinic anymore so, for any number of reasons, it will help to have a list with your family history, dates of  major illnesses, dates of surgeries, medications and when you started them, allergic reactions, and your current notes, that you have been keeping in a folder, about what is going on with you right now. 

Get Instructions

If you are worried about problems that might arise at home, ask, "What do I do if….?"  Find out who would be available if you called for help and where should you call if it is a weekend.  Just having these instructions will help you to feel more comfortable.  Your doctor or SLP may prefer that you call them instead of going to an emergency room or stopping at a local clinic. Find out. Repeat the instructions, get the numbers, write them down and verify them, so you will know you understood properly.  Your caregiver may be the one who is doing most of the talking and note taking and that is suitable, especially for new laryngectomees..

What Did You Forget?

No matter how hard you try, you will get home and remember something that you didn’t ask.  If it is urgent, call the nurse back right away, tell her you forgot, and have her get an answer for you.  Otherwise, start your list of questions for next time.