Mary Ann Hicks
It is with sorrow that we report the passing of Mary Ann Hicks on November 9th, 2004. Mary Ann went into the hospital in New Orleans right after attending the conference. Her declining illness caused her family to go to great lengths for her to make it back home in SC. Mary Ann passed away peacefully, surrounded by her beloved Howard, her wonderful son, Mason, and her 3 older brothers.
Mary Ann will probably be best remembered for her contributions in her 11 point startup list, which she allowed us to print in our October 2002 newsletter. That file appears below. The list has been widely circulated, helping many “newbies” and seasoned survivors along the way. We wish her family and friends the very best.
My Carcinoid 11 Point Start Up List
The following was posted on the ACOR list by Mary Ann
Hicks and is reprinted here with her permission.
1) Contact the Carcinoid Cancer Foundation - call the 800 number to get a list of the Carcinoid specialists. You will need a specialist to lead your local oncologist in your treatment, because, unless you are an exception, the local doctors will not even know how to spell Carcinoid. The main quality you need from your local oncol is a willingness to follow the lead of you and your specialist.
2) Know that you can FIRE your local doctor if he/she is not willing to provide you with the correct treatment. I was lucky and only had to fire my first oncologist. Well, I didn't actually fire him.....it's not wise to burn bridges, you never know when you may need them...I just found another one.
3) After you visit with the specialist, encourage your local oncol to call him and discuss your condition and treatment.
4) Read all you can about carcinoid. The first web sites I went to were: a) www.carcinoid.org the site for the National Carcinoid Foundation. Read and re-read the transcripts from past symposiums by the specialists b) Susan Anderson's home page which has links to many good sites http://home.att.net/~S.L.Anderson/ (now www.carcinoidinfo.info)
5) It is important to note that a lot of the information you read will be out-of-date, so don't freak out at the statistics you see. If you're like most of us, the first thing you will look for are the statistics. That's only natural when you have been diagnosed with a terminal illness. Most of the statistics you will see are based on old data. Look at the dates of the reference material. New drugs and procedures have been developed over the years, which have very positive bearing on our longevity.
6) I immediately started a notebook to carry with me when I visit my doctors. I don't need it as much now as at first, mainly because they (I now have 2) are too heavy to carry around (the notebooks, not the doctors -- LOL). One thing it did was make an impression on my doctors that I was going to be very pro-active in my treatment, and my treatment was going to be a 'team effort right from the start.
7) You will be having lots of tests and procedures, and you should keep an updated profile to give to your doctors, and also to keep on your person and/or in your car in case of emergencies. Susan Anderson has a good template to follow. Also obtain copies of all reports and tests to keep in your notebook.
8) This brings up one very important point which you should research more.....'Noids' should avoid ephinephrine, which is a normal medication given with novacaine at the dentists and administered by anesthesiologists during surgical procedures. 'Epi' can cause a carcinoid crises even if you have never had one. I know because I went into crisis during recovery from my surgery last December and the surgical team was not prepared for this. Sandostatin will control this crisis when it occurs. One exception I discovered, was that Epi is necessary in the case of allergic anaphalytic reactions (i.e. bee stings), so it cannot be avoided in this case, just be sure Sandostatin is available also.
9) There are 2 other support groups which you should also check out to see which ones you may prefer to subscribe to: a) http://groups.yahoo.com/group/Carcinoid/. This group is closely moderated and is focused on technical and medical information sharing. Dr.Woltering and Monica Warner are 2 carcinoid specialist who read and post to this group. b) http://www.topica.com\lists\carcinoid This is a relatively new group, a spin-off from the ACOR group and is more open to personal support than the Yahoo and ACOR lists (more 'touchy-feely' if you know what I mean). The ACOR group is somewhere in the middle in these 3 lists.
10) As soon as possible, attend a local support group function, or a national Carcinoid seminar. Hopefully someone in your general location will contact you. I have not heard anything about the next national meeting. There may not be one until next Spring.
11) Oops, I almost forgot. Don't sit around and isolate yourself. It is very easy to get depressed. I was given very good advice to get out and work with others as much as possible, and get your attention off of yourself whenever possible. I definitely do better emotionally and physically when I am busy with things outside of myself.