giving it up

Hi Melodie,

I understand your frustration and somethings wanting to give up. You are though I am sure, alot stronger then you think. I feel these challenges and crosses we have to bear, are a true test we are given to see, how our inner strength can endure and handle things. Let me say, I have had breast cancer, and anal cancer 2 primary cancers, 3 yrs apart from each other. I have a chronic nasal and middle ear passages, damage, thanks to the doctors, where i can only breathe about 30%, most times, i do mouth breathing. I suffer pain and pressure from it, all over my head, and neck, it effects my TMJ and, sometimes, radiated down my back and shoulders. Also, I have now been diagnosed with high BP and Diabetes. I have severe edema, and vascular and lymphatic problems, from the radiation they did to the OUTSIDE, PELVIC ORGANS, when they did the anal cancer, as a precausion, for fear of the lymph nodes being effected. I never had cancer in the pelvic organs. Now, they found a cyst, or mass, measuring 9cm, they do not know how to get up there, because the rads caused, scar tissue. Can't get a uterine biopsy, and I can never have a pap. They can't use estrogen to open things or try to, because, I had estrogen related breast cancer. I have gained alot of weight, ALOT, from being housebound, to do, hip and leg pain, and, symptoms of peripheral neuropathy, and im fighting with the weight now too. I have anxiety from all this. In the interum of going through all this, my dad died and a few of my uncles. One of my doctors said, if I don't lose the fluid in my legs, I stand a chance of losing my legs. I am on a water pill over 1 year now 80mgs.
I am not a big eater, I do not use salt. Alot of this, is from treatments, even the high BP and sugar levels have gone nuts, because of the water retention and more. I am not looking for pity Melodie, because I am not that way. I just merely want you to read, the things others go through, not making less of your concerns...but hopefully, reading about me, can give you more strength, for you to move forward and FIGHT FIGHT FIGHT, because, I am sure and believe, you can do it. I got tough and said, I am not going to let alll this, ruin my life. I am going to stay on top of things and try my best, to FIGHT, because I still have my mom and people who care about me and I care about myself and this board and wonderful people on it, of which you are one. I am not denying that the road is not a hard one, it is a tough battle, no matter what we are facing but, when you hang in there, and show your health issues who is boss, you will come out on top, and feel so good for, giving it all you got, and coming out on TOP. It is a good feeling. Not saying it is easy, but with the help of this board and the great people on it...and your INNER strength, and the grace of God, I am telling you....YOU CAN MAKE IT, IT IS POSSIBLE...and we will be here for you to help you.
GOD BLESS YOU and May he ALWAYS WATCH OVER YOU AND GIVE YOU STRENGTH TO FACE WHATEVER COMES YOUR WAY....LOVE YA, NINA~

melbas2 said:

strength
Wow, Nina...you have gone thru so much. Now I seriously feel like a big baby whiner. I will keep u in my thoughts and prayers, and I will stop whining about what HAS happened and Thank god for what hasn't. Thank you, Melodie

we need to get this stuff out
I am so glad we have this board to just vent about our health and the system, etc. It helps me to read what others are going through. I read psalm 38 as part of my morning devotionals and wept like crazy. But it's good to cry sometimes. It's just what we need to stop holding everything in. I am glad I read this as it is moving me out of myself. It is scary to read these things because I think "will this be me also", but it's out of my control. I just have to keep going to my treatments and report the symptoms to hopefully get a better understanding of this changing body. And keep meditating, praying and moving this body when possible. God bless you all.

TuffCookieHere2 said:

Hi Melodie,

I understand your frustration and somethings wanting to give up. You are though I am sure, alot stronger then you think. I feel these challenges and crosses we have to bear, are a true test we are given to see, how our inner strength can endure and handle things. Let me say, I have had breast cancer, and anal cancer 2 primary cancers, 3 yrs apart from each other. I have a chronic nasal and middle ear passages, damage, thanks to the doctors, where i can only breathe about 30%, most times, i do mouth breathing. I suffer pain and pressure from it, all over my head, and neck, it effects my TMJ and, sometimes, radiated down my back and shoulders. Also, I have now been diagnosed with high BP and Diabetes. I have severe edema, and vascular and lymphatic problems, from the radiation they did to the OUTSIDE, PELVIC ORGANS, when they did the anal cancer, as a precausion, for fear of the lymph nodes being effected. I never had cancer in the pelvic organs. Now, they found a cyst, or mass, measuring 9cm, they do not know how to get up there, because the rads caused, scar tissue. Can't get a uterine biopsy, and I can never have a pap. They can't use estrogen to open things or try to, because, I had estrogen related breast cancer. I have gained alot of weight, ALOT, from being housebound, to do, hip and leg pain, and, symptoms of peripheral neuropathy, and im fighting with the weight now too. I have anxiety from all this. In the interum of going through all this, my dad died and a few of my uncles. One of my doctors said, if I don't lose the fluid in my legs, I stand a chance of losing my legs. I am on a water pill over 1 year now 80mgs.
I am not a big eater, I do not use salt. Alot of this, is from treatments, even the high BP and sugar levels have gone nuts, because of the water retention and more. I am not looking for pity Melodie, because I am not that way. I just merely want you to read, the things others go through, not making less of your concerns...but hopefully, reading about me, can give you more strength, for you to move forward and FIGHT FIGHT FIGHT, because, I am sure and believe, you can do it. I got tough and said, I am not going to let alll this, ruin my life. I am going to stay on top of things and try my best, to FIGHT, because I still have my mom and people who care about me and I care about myself and this board and wonderful people on it, of which you are one. I am not denying that the road is not a hard one, it is a tough battle, no matter what we are facing but, when you hang in there, and show your health issues who is boss, you will come out on top, and feel so good for, giving it all you got, and coming out on TOP. It is a good feeling. Not saying it is easy, but with the help of this board and the great people on it...and your INNER strength, and the grace of God, I am telling you....YOU CAN MAKE IT, IT IS POSSIBLE...and we will be here for you to help you.
GOD BLESS YOU and May he ALWAYS WATCH OVER YOU AND GIVE YOU STRENGTH TO FACE WHATEVER COMES YOUR WAY....LOVE YA, NINA~

Glad to see you posting
Hi, Nina, Haven't seen you posting in a while. I was worried about you. You have been through so much, and I know your fight has been tough. Thank you for sharing your experiences; we are all learning things from them. I hope in some way we help you, too. Keep fighting and don't give up hope. I am sure the docs will find a way to get you the tests/scopes/scans you need. Keep us posted. God bless.

melbas2 said:

HPV Virus
they have never saud those words to me, but my sisters are now hearing it after thier peps. My doc wouldn't keep this frim me... would she? I had the port,, I've hsd the hystercotmy, I've had hemmy surgery, I've had the 6 day Atgam treatment' I'vr had the cheom, the radiation, And most recently the port. I haven't had a pap since I started this. I haven;t had a mammogram. My neweat set back back is the bloating, I know I'm trying to gain weight, but it is all supposed to be in my stomach. I was a very cute 30 year old pregnant woman...but I/m now 50. Any clues on this one?
thanks, Me;odie

hpv virus
hey, melodie and everyone; i have never had HPV and have been getting paps since I was 20_--i am now 58. they even tested me again at MDA for both HPV and HIV> my doc just said it was bad luck. my body could not fight the cancer cells. i never smoked (my mom did) and i drank only a few years of my life. sooo who knows. i did have constant irritation and inflammation for over a year and that is when i went to the proctologist. and he said it was not cancer. UGH!!! another missed diagnosis. so we can get this stuff for no reason at all, so it seems. sephie

melbas2 said:

HPV Virus
they have never saud those words to me, but my sisters are now hearing it after thier peps. My doc wouldn't keep this frim me... would she? I had the port,, I've hsd the hystercotmy, I've had hemmy surgery, I've had the 6 day Atgam treatment' I'vr had the cheom, the radiation, And most recently the port. I haven't had a pap since I started this. I haven;t had a mammogram. My neweat set back back is the bloating, I know I'm trying to gain weight, but it is all supposed to be in my stomach. I was a very cute 30 year old pregnant woman...but I/m now 50. Any clues on this one?
thanks, Me;odie

No one has said "you have hpv"
They have said that cervical cancer and squamous cell anal cancer are caused by a virus called hpv. This came from more than one cancer specialist. I think if we were gay men (hope this is not offensive because many of my best friends are gay) there would be more openness about antiviral medications and we might be getting them or could have gotten them. Women only have a good voice when it comes to breast cancer.

sandysp said:

No one has said "you have hpv"
They have said that cervical cancer and squamous cell anal cancer are caused by a virus called hpv. This came from more than one cancer specialist. I think if we were gay men (hope this is not offensive because many of my best friends are gay) there would be more openness about antiviral medications and we might be getting them or could have gotten them. Women only have a good voice when it comes to breast cancer.

As far as I know, I was
As far as I know, I was never tested for the HPV virus when I had the original surgery to remove the tumor (Sept 2008). I was recently tested and the result was negative, but my gyn told me that just means that the virus is currently not active. I could still have it, but it's dormant.

My oncologist is the one who said most anal cancer is caused by the HPV virus.

I also had a lot of constipation issues (real bad) for several years before diagnosis - don't know if the constipation was DUE to the cancer or was a contributor to it.

It certainly is very confusing!

RoseC said:

As far as I know, I was
As far as I know, I was never tested for the HPV virus when I had the original surgery to remove the tumor (Sept 2008). I was recently tested and the result was negative, but my gyn told me that just means that the virus is currently not active. I could still have it, but it's dormant.

My oncologist is the one who said most anal cancer is caused by the HPV virus.

I also had a lot of constipation issues (real bad) for several years before diagnosis - don't know if the constipation was DUE to the cancer or was a contributor to it.

It certainly is very confusing!

i agree about the HPV
yes, i have also read that HPV and HIV cause anal cancer but i would think that other things could cause it also such as poor immune system, and chronic inflammation and irritation of the anal tissues. i thought mine was a hemmie and my first doc misdiagnosed for 9 months. i perhaps do have the HPV virus and each annual pap smear did not catch it because it was dormant but who knows. i hope not for my hubby's sake. we just have to keep letting others know to be careful and if young enough to get the vaccine. sephie

RoseC said:

I found this - it explains a
I found this - it explains a little about 'dormant'. The site is for cervical cancer, but it mentions the same HPV virus can cause anal cancer. The site also has answers to a lot of other questions...

http://www.thehpvtest.com/about-hpv/hpv-faqs/#Can-you-get-HPV-through-oral-sex

'Question:
After you get HPV, will it go away? Or will you have it forever?

Answer:

Medical science does not yet have all the answers to life's mysteries, and this is one of them. The Centers for Disease Control and Prevention (CDC) estimates that more than 90 percent of HPV infections are "cleared" by the body within two years. However, it is not known for certain whether the body actually gets rid of the virus altogether, or – as appears to happen in at least some women – the virus is merely suppressed to a low, undetectable level. It's possible that either scenario can occur, depending on the woman.

The good news is that even if the HPV infection is merely suppressed by the body – "hiding" in the cells at a low level – it cannot cause abnormal cells to form or spread to another person when it is in this non-detectable state. The bottom line: A negative HPV test means you are risk-free for at least the next few years.

However, it is believed that old HPV infections can "re-activate" years later, most likely due to changes in your immune system. (That's why it's important to keep your immune system healthy, by eating well, exercising and not smoking. Some experts also believe that taking a folic acid supplement helps.) In addition, if you have sexual contact with a new partner, you could get a new HPV infection with a different type of the virus. Thus, periodic re-testing is needed. Current medical guidelines recommend that women with normal Pap and negative HPV results be re-tested every three years. For more information on how often you should be tested, visit the section of this site on "Understanding Your Test Results."'

Thanks for the info
Hi, Rose.. Thanks for the info. I have to say that this is news to me. I am 60 years old; have had paps every year, blood tests, etc every year, both by my primary care doctors on the outside and by the medical doctors at the VA hospital. I am a Viet Nam era veteran. I have never tested positive for anything. including the HPV. I have absolutely no risk factors for any type of cancer (no smoking, no drinking, no illegal drug use/abuse, excellent diet, and exercise, no multiple partners, etc). My oncologist said it is a complete mystery how I could have gotten cancer. I am a walking anti-oxidant. So, I am dumb-founded about the HPV thing... unless it is in everyone, and it rears its ugly head when and where it wants... and it was just my un-luck of the draw. I will check out this web-site. I am curious. I am now 15 months clear. I sure don't want this cancer to happen again. Thanks again for the info. God bless.

SueRelays said:

OK Melba!! There must be a
OK Melba!! There must be a reason I popped on here today.....guess it's to give you a little kick to get you going again!!!

I'm not bragging ....but I have had 3 diagnosis of a primary cancer. Went through anal...then a secondary (non smoking) lung, then found out the anal spread to my liver, so had 1/2 of it removed. THIS YEAR.....Breast Cancer!!! It is a tireless beast, hellbent on tiring us....but don't let it Melba! We are soooo much stronger and better than this.
Trust me, I know ALL to well how depleting it can be. I was so hoping to enjoy this summer and NOT think about cancer....but for some reason it was just not meant to be. Next Year???
As much as i HATE all of it, I will do it and win, because I LOVE life way too much to let something as small as a cell get the best of me !!

Come on Melba.....I know you are strong....I know you are tired......but strength trumps...you will get through this with all the support and love here.....let everyone help you. I believe there is strength in numbers, and there are so many that can relate and help.

your post to melba bought
your post to melba bought tears to my eyes......yes i thought that i could get away with
not thinking about my cancer this summer......i was given a negative diagnosis but still was suggested to under go surgery to remove a lymph node..... the lymph node was the size of a cherry??????what kind of node is that size? my cancer started out as rectal and moved to my lung(non smoking) and the node was in my chest/breast.

do you ever feel that when you talk to people about your condition that they really are thinking that you are going to die????

melbas2 said:

giving up
I know...it was a self pity moment.I have so much to live for, sometimes I just wonder why it's so hard. I am now having to go back to the hemmy surgeon, I have diarehha constantly. I use the wipes, the desitin, the pads, the lidocan, and I've already thrown away 4 pairs of underwear in the past hour and 1/2. I can't go too far if I don't know where the restroom is.It's demeaning and embarrassing. Will I need more surgery? Wouldn't it be better knowing that sitting here daily shitting all over my self? Absolutely...it's just getting up the couage to find out. So I'm making my appt first thing in the am. I did have Merry Maids start today, and the stress relief of knowing my my house is clean was well worth. So prayers for the surgeon...My grandaughter will b 2 in 2 weeks and I will be there. Thanks, Melodie

giving up
Melbas, I also blaze through the underwear, and have diarrhea a lot of the time. I also still bleed if I am not careful with what I eat, I have a hard time getting around, etc. It does feel at times like why even bother but then I look at my grown children still finding firsts in their lives, and my husband and I think how can I quit? The pain on some days is still unbearable. I just recently found these new pads I ordered and am going to try. Hopefully it will save more of my underwear. If they work I will let you know. We all have our days of NO MORE, but our souls know we will still try. Best of luck.