Figured it out

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11/8/2010 8:40am
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Replies: 23

I have had mel for 2 months now and I think I finally  know what to say. It usually goes like this "You have melanoma? Oh, my friend, cousin, uncle (insert relationship here) had that and after a long battle and lots of suffering they DIED)!!!!"  SHEESH! Don't they realize that could be me? What in the world? I usually just stand there feeling hurt and dumbfounded. Now, Im not the kind of gal that takes pleasure in hurting another persons feelings but this thing is really bugging me. Has this been happening to any of you? What do you say to these well meaning people? Here is what I think I will say the next time someone begins to regale me with a horror story. I am going to look sincerely into their eyes and with a very kind voice say "Oh, I am so sorry that your friend (whoever) had this awful disease, I sure do hope this story has a HAPPY ending, otherwise I would rather not here it thank you very much".

Trying to stay positive here

fliberdy

bluepeople - (11/8/2010 - 12:50pm)

I have the opposite problem, which isn't really a horrible thing I guess.  When people find out my hubby has melanoma they always say,  "well so and so had melanoma and they are fine."  I feel like they aren't taking it seriously enough, but I guess it is better that they are being positive rather than being a doomsayer!  Good for you for thinking of a good comeback for them.  Hopefully it will make them think twice and help them to think a little before they speak next time. 

Akilyn

Linda/Kentucky - (11/9/2010 - 6:21am)

My husband and I had the same thing happen with us at initial diagnosis.  Everyone kept saying "oh I have a friend" you know that story...... Maybe they say it to sound positive but very few people really know the severity of melanoma once it strikes.  Yes, praise God there are those stage IV's living a good lives with it but they went through heck to get where they are now.  I never came up with a good comeback when people would say this but now that he is a stage IV and not much in treatment left except maybe trying chemo they realize it is much much more serious than having a skin lesion cut off.  Thanks for letting me vent about this for the first time...

Linda/Kentucky

I can do ALL things through Christ who strengthens me! Phillipians 4:13

fliberdy - (11/9/2010 - 7:58am)

Yes,  I have had that one too.  I know what you mean about not taking it serious enough. A few have told about their cancer and I realize they are referring to basil cell.  Big difference. I guess its hard no matter what.

Anonymous - (11/8/2010 - 1:05pm)

Glad to see you posted. How are you doing?? Did you get the results of your pathology report yet???

glewis923 - (11/8/2010 - 7:15pm)

funny you post this, as i just read a article yesterday by Christopher Hitchens from Vannity Fair web-post/magazine.  It was titled "Cancer Ettiquit" (sorry my bad spellin')  ....anyway, the point is it becomes awkward reguardless of how people ask and how you answer.  I personally have been all over the map.  

I find it best for me to make pathetic attempts of humor, or "brave" conveyance of dismissiveness.  I believe in God and DO think miracles CAN happen, but I really get sick of people who seem to think that prayer will cure me.   It like makes me feel like:  "OK,  my cancer is now in my lungs, does that mean i'm not being a good enough Christian or something?"

I just have to realize that most people DO care about me, and their approach / my response is really irrelevant to the facts.  You know who really loves you, and those who want to just jib-jab or find gossip- then deal with them as you see fit!

Love and Take Care-  Grady.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

fliberdy - (11/9/2010 - 7:57pm)

 So true, so true. Prayer is wonderful and helpful but even the bible says something about "time and unforeseen circumstances befall us all". 

That article sounds interesting, Im gonna check it out. I cant seem to read enough about this subject.

Glad you are "Here for now" Grady

Suzan AB - (11/13/2010 - 1:40pm)

Boy Grady, you hit the head on the nail!  I have been on a prayer chains, been cured by Jesus, etc. and now I am awaiting confirmation from UCSF that the mets have spread to my lungs.  My stinking thinkin is "Am I really such a bad person?" 

Stayin Alive One Day At A Time...

My best,

Suzan AB

Stage IV

Presently...One Day At A Time.

Anonymous - (11/9/2010 - 9:49am)

Hi fliberdy,

 

How  did your SNB go???Did you get your pathology report back??? Hope your pain is better.

Take Care

fliberdy - (11/9/2010 - 7:35pm)

Yes, thanks for asking. I had my post op 2 day with a dr who is filling in for mine while he is away at a MM convention in Australia. I will see Dr J when he gets back. The good news is there is no MM in the nodes!! As far as the original site on my back, there does not seem to be anymore rogue cells. Since it was not my dr. he was very unfamiliar with my case and what my concerns were about the rogue cells. So, Im a little frustrated and will feel much better when I see dr J and can ask more questions. That being said this dr 2day asked if I had done a pet scan, no I have not. He wondered why and suggested I request one.  What do you think? Is that standard protocol?  

I am tender from the node removal but no big Whoop.

Oh, did you ever find a dr to go to in our local?

Thanks for your concern and I hope things are tolerable for you.

Keep up the fight

fliberdy

W. - (11/9/2010 - 8:02pm)

Congrats on clear nodes! That makes you stage I or II, depending on whether your original mole was ulcerated.

 

I don't think PET scans are standard protocol for early stage melanoma. There is also considerable radiation exposure (comparable to working as an aircrew member for a year).

fliberdy - (11/10/2010 - 6:27pm)

Yikes, thats allot.  Maybe thats why he did not order it for me. 

thanks

Brandi - (11/9/2010 - 6:22pm)

Oh my goodness I know how u feel. Countless people have told me the story of the so and so who had mel and that was it. I'm like ya I know it's dangerous and your point? I think sometimes think I don't take things seriously because I don't cry and get emotional. I get ticked off and ready to fight! I don't think people know how to deal with me. I don't stop my life I don't run and hide under a blanket and sometimes I think people feel the need to tell me these horror stories to make me more realistic. Being realistic is not the problem. I just don't see the point in feeling sorry for myself. In the first few weeks that I was trying to deal with this dx I was told by a doc all the negative effects of mel. Guess what I already knew. I felt like crap leaving his office I felt like there was no hope and I may as well just give it up. I went to see another doc and I actually told him that I was happy that for first time someone wasn't making me feel like I was going to die tomorrow. Good grief I don't think that these dr's or others know how difficult it is have this dx without them telling you about all the horrid things that can happen. Don't get me wrong I am all about telling patients the truth but there is way to do things and not make the person feel hopeless. Long story short I get you! Hang tough and keep positive. Eat right and yes I have heard very promising things with regard to tumeric I take it everyday and put it into my food. Eat your greens and berries, bright colored foods are good. Anything that is an antioxidant is good also. Eat cinnamon I find that if I put it into yes my green tea it tastes great. I drink green tea for the antioxidant effect as well. I am a huge believer in nutrition and natural healing. I also believe in the power of prayer. I pray all the time for myself and for others.

fliberdy - (11/9/2010 - 7:44pm)

I guess  I am going to have to make myself drink green tea, I keep hearing such good things about it. Its just that it gives me a stomach ache.  Even the decaffeinated ones do.

I sure do like your attitude! Im with you, no hidden under the blanket. Just keep putting one foot in front of the other... In some ways I kind of feel like I have been going abound like a robot keeping my emotions in check for everyone else. I guess we all have our own ways of dealing with it. The important thing is we ARE dealing with it. Thats why this bb is such a wonderful resource.

Keep doing what you are doing,

sounds like you have got it figured out.

fliberdy

Brandi - (11/10/2010 - 2:30pm)

First, Thank you for the encouragement I appreciate it. Green tea used to make me sick to my stomach to but I started to slowly introduce it into my diet and now I am fine. Another healthy snack I like is to grind flax seed, put it on cottage cheese mixed with mixed fruit berries (I get the frozen ones and let them defrost into the cottage cheese) good snack and it's packed with antioxidants. Another thing to try is sprinkling tumeric into your foods for example: salads, meat for stuffed peppers, taco meat you get the idea. I do this along with taking it as a supplement. Co q 10 is good too has a lot of antioxidant properties. There is numerous research with regard to these different vitamins and herbs check into it on the web. Punch in tumeric and melanoma and you'll find a lot of good stuff. Coffee has been shown to prevent certain cancers as well I was just reading about it last night. Coffee has antioxidants as well. I love dark chocolate and it's good for antioxidant purposes. Acai is also a good antioxidant and has become more popular since being mentioned on Dr Oz just be sure you are getting the good stuff. I am a firm believer of incorporating good foods into the diet for the purpose of fighting disease. don't get me wrong I still eat the bad stuff here and there but I try to keep it to minimum. For example I had tiramasu today at lunch LOVE the stuff. I guess the plus side it is has coffee in it LOL! Just crank it up and go for the healthy shot in life. I need to exercise more I am naturally a thin person but I need to get off my butt. I work 12's on my feet a lot but need to lift more than just the 300lb patient! I am in school right now so it makes it hard to exercise like I want but I try. I hope this helps!

Anonymous - (11/10/2010 - 4:24pm)

This might sound dumb but just asking:) I have been taking Curcumin supplements for the last 16 months.I have always seen were people would suggest sprinkling Turmeric on there foods or cooking with it.I have bought a couple bottles at the grocery store but never use.It this something(turmeric) you have to buy at a health food store in the spice section? I always forget when I go in to the health stores.

Brandi - (11/10/2010 - 4:47pm)

Not a dumb question none are right! Tumeric can be found in the spice aisle at a grocery store or even walmart. I checked the prices and walmart's was the best price.

Anonymous - (11/10/2010 - 5:25pm)

Thank You:)

Anonymous - (11/10/2010 - 4:24pm)

This might sound dumb but just asking:) I have been taking Curcumin supplements for the last 16 months.I have always seen were people would suggest sprinkling Turmeric on there foods or cooking with it.I have bought a couple bottles at the grocery store but never use.It this something(turmeric) you have to buy at a health food store in the spice section? I always forget when I go in to the health stores.

dian in spokane - (11/13/2010 - 1:57pm)

 curcumin is a very popular spice in Indian cooking. But unless you are going to switch to eating Indian most of the time, you might not find it that easy to supplement it by 'sprinkling it' on things you are cooking. I can't remember the exact amounts, but you would have to eat a LOT of curcumin for it to be helpful. I think supplementing via capsules is likely to be much easier.

 

I've tried to find it for sale in it's root form, but it's not that easy. Maybe in places with larger Indian markets (not here in spokane) it might be more readily available. Growing it might be an option, but I think you have to start it with a 'starter'.

 

Fortunately.. it's very available in the local health food stores in capsule form.

 

dian in spokane

fliberdy - (11/10/2010 - 6:52pm)

OK, I will start slow with the green tea. The body is so fascinating the way you can acclimate yourself to different  foods. When I first became a vegetarian I had a hard time with all the legumes but now they don't bother me at all.

I have been taking a turmeric supplement but Im going to do like you, and start  sprinkling it on foods too. I do use the other supplements you mentioned including chocolate (is chocolate a supplement? he he) but I think if we can eat the foods with the nutrition in it, its more beneficial don't you?  I wish that western medicine was more balanced and gave good nutrition more credit. When I first found out about my MM I read a lot about fighting it with nutrition and started to take many different supplements. Then, when I had my first oncologist appointment they of course had me list everything I was taking. They looked at me like I was nuts. Thats OK, we do what we can right. And I think it makes us feel like we are doing SOMETHING to fight this thing.

Not to turn this into a nutritional bb, but I was wondering about kale. Its up there with the other #1 greens to eat right? Well, someone just told me that you have to cook it or it could be bad for you to eat too much of it. Something about the thyroid. Have you heard of this? I have not been able to find any info on it.  I have been throwing raw kale in my green drink every morning so I am wondering if I should stop doing that.

Thanks for your input

Brandi - (11/10/2010 - 8:25pm)

O yes, You have hit smack dab on my biggest pet peve! Western medicine has a hard time accepting anything other than what has been taught. The problem is medicine does not teach a whole lot with regard to nutrition. Certain things yes like what foods interact with what medications as far as educating the patient not to eat too much of these foods. For example: foods containing vit K can interfere with coumadin, or when you are on lasix you can eat foods with potassium b/c lasix depletes potassium (k+) in the body. For your question as far as I can come up with certain foods contain anithyroid properties and kale is one of them. Too much kale can inhibit the action of the thyroid therefore creating hypothyroidism. Smoking can do the same thing. The good thing is that if the culprit is withdrawn the thyroid will usually bounce back. Hence your friends advice to be careful with kale. Yes, I too have heard it is very good for the body. I would suggest you make sure your thyroid levels are stable. I can't give you any medical advice as far as what to do in this situation but normally foods in small amounts are not toxic to the body. There is always that small chance that these foods can interact with something else though. That is why your doctor always tells you "well there is always a chance of ......" You need to look at the meds you are on if any and then make sure that nothing you are taking is going to cause an interaction with the foods you are eating. I can imagine your onc looked at you like you had 3 heads docs tend to do that when they are not educated in nutritional supplements. Heres and example for you everyone is touting Vit D right now right. Well, the man who first began preaching the benefits of Vit D was laughed at by the medical community. They didn't think a little vitamin could be so beneficial guess they were wrong huh! dont' let the docs get you down or tell you you are being silly for taking all these supplements just b/c they don't understand it doesn't mean they are right. I won't tell you to go against medical advice like I said some meds and herbs and supplements can have different interactions it is important to know what they are. For instance, my aunt is on synthroid and you should not take a proton pump inhibitor (PPI) with synthroid. Well guess what her GP put her on a PPI and the 2 interacted she had all kinds of problems until she talked to her ENT and he told her that you cannot mix the 2. My point is we all make mistakes, be careful with what you mix together and remember you need to educate yourself to be in control of your healthcare. I hope this helps you.

simone - (11/9/2010 - 9:49pm)

I also was diagnosed 2 months ago.  Sorry for both of us.  The past two month have flown by, right?  ...and crawled by because it feels so slow at the same time, right?  Yeah, I know.... 

I have the opposite comments!  When people realize that I've had Melanoma, they say, "yeah, my so-and-so had it, too.  He/she has a little scar like this big (and show me the size of a penny)."  Obviously, most people think Melanoma & Basal Cell are the same... or any "skin cancer" is "skin cancer... you, know, no big deal".  That's what I come across all the time.  I never correct them.  But I do want to say, "NO!  The reason I have puffy eyes is because I've been crying all night b/c I am afraid I am going to die from this!!!"  But that wouldn't help anything, right?  And definitely not my mindset!  :) 

I think your response is a good one.... let them know you are only accepting positive stories/vibes/etc.  :)  Good luck... stay positive.  We need to.... I'm planning on beating this thing for many DECADES to come!!  :) 

Brandi - (11/10/2010 - 4:49pm)

Good luck to you, keep your positive attitude and spirit and kick it's butt! I know how you feel sometimes I get scared too I don't let it show though b/c I don't want my loved ones to be scared. I have always been the strong one as some would say and I intend to stay that way. I don't want anyone to worry about me unless they have too and right now its all good.