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Chronic Pain
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Posted 7/17/2008 1:47 AM (GMT 0)
eyes  Hi everyone.

  I did some reading about all the pain everyone is feeling and all the medications and all the problems. I keep trying to identify with what Im going through. A bit of history, I am a 40 year old woman living with chronic pain in the worst possible way.  The hard thing for me is I never took an aspirin for a headache and now I cant tell you the number of pills I take I lost count. I used to be an active manager working in NYC for JPMorganChase, I am a mom to 3 kids that I adore and I am remarried to the man of my dreams going on 12 years together. We are 6 years married and we dated for 6 years. Our youngest son is between us and my other 2 children are from my first marriage of 10 years. SO, I was an active very busy woman who went everywhere and did everything with my children and now husband UNTIL 2004. I was diagnosed with breast cancer stage 2b. WORST thing that ever happened to me in my life I had just gotten married in 2002 and just had our baby in 2003. And the desicion was a double masectomy with reconstruction and chemo and radiation, YIPPEE. Well I got through the surgery It destroyed me inside but I was still alive. I was newly married and certainly didnt want to go from a 36d to two potholes in my chest so I opted for reconstruction. What a joke. They say oh it looks so real and bla bla I didnt like my reconstruction not natural at all after all my breasts never had scars going through them so to me thats not attractive. The only good thing is I dont have to stuff a bra. Woo woo but now Id have to reveal these ugly things to my brand new sexy husband and to be honest its been years since hes seen them now. In fact we dont have any intimacy at all now. So I survived the surgery I survived the radiation I survived the reconstruction then I get hit with the news, MY cancer has returned and its INCURABLE> Imagine hearing that one >> I was in the hospital because all the veins in my chest collapsed from radiation and I needed a stent put in my chest and an angioplasty so I was scanned and they found cancer went all through my bones. No wonder what the horrible back pain was all about it was in my back then one day I woke up and I couldnt walk on my left leg it felt broken well it was broken alright it was a fractured femur. Great back in the hospital and they put a rod in my leg, my bone cancer is now spread to both hips, left leg below the knee and above the knee. I have cancer in the right hip and 2 places in the back and my ribs and sternum. THey thought they saw activity in the colon but they would need to do that lovely test. ANd I just wont do it. So now Im on Thyroid med, plavix, coumedin, Lexapro for depression, Arimidex, MScontin for pain and Norco for pain. I take chemo every week and it causes nausea and vomiting. I went from 124 healthy pounds to now 97 pounds. My rear went to flab it just fell to the floor I never looked so bad in my life my hair had to be cut because it was thinning from chemo now its patchy, and gross. I am always in bed from pain in my left leg where the rod is and my back. I need pain medicine all day 12 pills a day of norco and 2 of ms contin. And if I run out early I go through horrible withdrawles where I get restless leg syndrome and my hands tingle and I rock back and forth in my bed for hours and my husband is not happy on those nights. The 30 day rule with the pain scripts make me want to die. I always run out before the 30 days and then I either have to get another script elsewhere and pay cash in a different pharmacy to get it or I have to ask one of my Aunts to send me some of hers sometimes she does and sometimes she cant and then I go through hell, the pain is UNBEARABLE and many times I wound up in the hospital just for pain control, I DONT KNOW HOW TO SOLVE THIS ISSUE.. if anyone has ANY ideas how a person with incurable cancer can get a huge backup of pain meds so I never feel the fear of running out or of withdrawels I would love to know how people do it, Ive been on them for years and years I tried going off of them many times and it never happens the pain is INSANE...Beyond a 10  There are nights I think Im going to die and I sort of WANT to die most of the time but then I look at my 5 year old boy and my 14 year old girl and my 20 year old oldest son and I cry..And I have 3 dogs that I adore but cant even take for a walk anymore. Its sad I thought Id be happy just to be alive but this is not living,, Im just here. Thats about it..

Posted 7/17/2008 4:20 AM (GMT 0)
Dear Regee,
Welcome to the HW forum. I am so sorry and saddened to read all you are encountering in your life. I wish I could reach out and hug you, but that would likely cause you more pain.

I don't know who is overseeing your pain management, but I'm taken aback that someone who specializes in cancer pain - particularly pain that has spread to the bone - wouldn't give you everything you need. You shouldn't have to run out, or resort to asking your Aunt, and while I can't condone your asking her I can understand being so desperate. You really need to be working closely with someone who manages cancer pain. Perhaps patches - morphine, for example - would help, along with additional meds for BT pain. I'm not a doctor. Guess I was thinking about what my mother was given.

I don't know what your prognosis is, but I think of Elisabeth Edwards, who has Stage IV cancer which is treatable but incurable. She is such an inspiration, but I don't know if I could be so strong in her place, or in yours. I would also strongly suggest you work with a therapist who, again, is skilled working with cancer patients. Are you part of a holistic program that treats body, mind and spirit? In NYC there should be one - I think Columbia Presby has an Integrative Health Center. I know of programs closer to where I am in PA, but you've got to have some near you. Bernie Siegel, I believe, is in Connecticut. He resources are available online.

You have reasons to stay alive, as painful as it must be. I really am not about to judge you. But I think you deserve to be as pain free as possible, and that you should continue seeking a program or specialist that will give you what you need.

I don't know if this helps. Please stay posting with us.

PaLady
Posted 7/17/2008 11:39 AM (GMT 0)
Dear Reegee,

Your story has touched my heart so very much. I can't believe the struggle you are going through. My prayers to God are for your suffering to become abated and that you at least get the medicine to make you comfortable ALL THE TIME.

I don't know if there is a time prognosis. The only reason I bring it up is because hospice is out there for you and they keep the patient comfortable with the meds you need at all times. It is an option to keep in mind, if not now then maybe later.

PAlady has given you some very good advice, as always. Don't forget to find a therapist in your area that maybe you can see to help you with the depression. I know it must be hard to get out, but I think one can maybe help you.

Welcome to the forum and God's blessings.

Lindaloo
Posted 7/17/2008 11:47 AM (GMT 0)
Hi thanks for the reply its a very nice note. However, I tried Pain management and they just kept switching medicines and never gave enough to last they were even worse only would give me like 100 a month. Im allergic to pain patches and I do take morphine pills that dont work. That is the MSCONTIN I mentioned in my note, so I think my body is used to it and it just doesnt work for me so everyday is a day of pain and worry as to how many pills I have left and I have to count them and plan on my calendar when I can get the next script ect. Its not good for me. I just want to wake up and not worry about all this. I have kids to worry about. The pills cause arguments between my husband and I he says I should watch them with my life and make sure they last but without a backup its hard because on those days where the pain is beyond what I can handle I cant even take an extra pill because then I will certainly be short for the month. I can never go through withdrawel again. I suffered so badly in the past 3 days after I ran out I never want to feel that way again.
Is your mom a cancer survivor. Have you ever heard of anyone surviving bone cancer I havent heard of one person to be honest. Once its in the bone its basically over. Now I just want to be comfortable until I die.
I mean very comfortable. I dont feel like I should be constantly worried about pain relief. Its not good. I actually panic about running out. It makes me sweat.

Anyway thanks for the reply, Im desperate for relief I can see how people steal and do illegal things just to be out of pain. I wish I was someone else sometimes. I have bad luck

Thanks LOve Reegee
Posted 7/17/2008 12:08 PM (GMT 0)
Hi Lindaloo.

I am not ready for hospice yet but when the time comes I definietly will use hospice. However right now I just feel like there should be more concern towards pain relief for someone like me who just wants to be with her kids and do things with them. To know that I cant hurts me. I feel like a horrible mom. Im always in pain limping and falling over from pain. Counting pills is an everyday thing for me I hate it. I used to be a dancer and work out in the gym 3 times a week just to be like this seems unfair. Im happy that its not my kids or my hubby that has cancer Id take it anyday rather than to see them suffer like I am. I cant take the pain. Its unbearable the bones ache and hurt so badly that you feel like taking anything and everything to make it stop. I wish I had my own private pharmacy to where each day I take a majic pill just one and it works all day and night ...I wish. But for some reason I was chosen to suffer. And I try but I cry Im not good this is the first time I emailed a forum I just want to see how people in pain do it. How do they get all the meds they need and I cant get a script half the time and when I do its like gold. There has to be a way to get through this my kids need their mommy while Im still here I want to really be HERE for them, like my mom is for me she is a 76 year old breast cancer survivor and she takes my children to school everyday and she walks my dogs and helps me I dont know how a 76 year old can be as strong and she doesnt take any meds just for thyroid. Thats it, I wish I could be as strong as she is. SHe had breast cancer at age 39 she never had chemo or radiation just a double astectomy and that was it no reconstruction or anything. I wish I could be a mom like she is .,.. she never complains and Im 40 and everyday I cry and complain and hurt. Its bad Thank you for the support ,, Reegee
Posted 7/17/2008 5:06 PM (GMT 0)
Dear Regee,
I want to try to help in whatever ways I can, although those are limited. My mother in her last months did have her cancer spread to her bones, but she was nearly 80 when she died. I do know that pain from bone cancer is some of the worst one can experience. I know this has got to be hard to read, but since you seem to already realize it, you're right there to my knowledge is no cure for bone cancer. However, your goal of wanting to life as pain free as possible, for as long as possible, is very reasonable.

You mentioned you were seeing a pain management doctor, but is this doctor a specialist in treating BONE CANCER pain? There are many creative mixtures of medications that doctors who are experienced at treating cancer pain use. Even if the only solution was to prescribe you more pills for the month so you don't have the understandable anxiety about running short - that would seem to be a start. Are you being seen by a facility which as I mentioned, addresses cancer needs of the "whole person"? Because a therapist or social worker in that facility could also help with family issues, and also be a support to you. It isn't that you're crazy or anything like that, it's that cancer, like many serious illnesses, takes a toll on every area of our lives.

If I'm correct that you're in NYC, there should be options for you. If you want, I would try to research some of these "whole person" facilities in the NYC area, if you are interested. You can also do your own research. But it seems to me the pm doc you're seeing now isn't meeting your needs. I guess an afterthought I just had is what is this doc's response when you tell him/her that you run out of meds some months and have to go through withdrawal? Have you discussed this - if not, that could be the first, and quickiest, step.

I hope this helps some. But even venting here to us is a good way to let out some of your fears and frustrations. There is good support here, that much I can assure you.

PaLady
Posted 7/17/2008 5:11 PM (GMT 0)
Hi Regee,

Welcome honey to our forum. I am truly sorry that you are going through so much. My sister also has cancer. Acute Lymphocyctic Leukemia to be exact. She has two boys, one with Angelman's syndrome, and another boy, who thankfully is healthy.

She was diagnosed at 40, and thankfully, we count our blessings every day that she is in remission now. For how long, we don't know, but we are greatful for each day that she is.

I can't imagine how difficult this is for you, for your new husband and for all of your children....yours, his and yours together.

As far as your pain meds go, I also don't agree with getting them from other sources other than your own doctor, but I do empathize with you in your desperation for some pain relief.

My sister's doctors, sent her to a good pain management doctor , who kept her in as little pain as possible. There is a certain level that she had to learn to deal with , but her doctors were pretty good about keeping her pain levels down.

My suggestion for you and your family would be to get you to a pain treatment center, and there are lots of them in NYC, and then work on changing your pain meds around until you get to a balance that allows you to keep your pain levels down, and lets you be involved in your children's lives as much as possible. It's not going to be perfect, by any stretch of the imagination, but there is a balance that can be struck.

There has to be a better medication program for you than norco and MS contin at this point in your disease.

I am sorry that you have found yourself in this position, and sorry for your pain.....I will send up some good thoughts for you, if they will help.

Bless you all,

Sandi

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