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Indigoblue queen Registered: 09/08/07 Posts: 94
11/05/07 at 05:10 AM #22 Sometimes I feel like: Humpty Dumpty who sat on the wall, Had a lumpectomy, and that wasn't all. Four lymph nodes were snatched, and some nerves were hacked, Sewn up, and patched Wish the surgeon had taken both off The decision to make is a tough call All the kings horses, and all the king's men Will never be able to make me whole again, Maybe a year, two, five, ten or more It's all a blessing, living and loving Learning to see a new light hovering Cracked, weeping, seeping, healing Cancer is ugly, and I think it's a bore. Dumpy and old from the chemotherapy Mindless and lost in the medical sea Guiding the way there are positive thinking And beautiful people imparting their wisdom Who knows what will happen, today or tomorrow A cure, a glimmer, joy or sorrow Today is golden, autumn brings harvest moons Love the snow in the winter, but can't wait for June Forward we ride on this merry-go-round The coaster of cancer cures will be found I feel like Humpty up on that wall Tipping and turning, trying so not to fall Should I topple over, soft wings and clouds Soft embrace, tumbling, rolling, fearlessly down Embraced and held in my mother's arms And if she's off flying over Jupiter or Mars, Mother Goose will do just fine, for now. Indi Seeing Oncoboy on Thursday. Working on some hardcore questions and demanding honest answers; no more intimidation. Read somewhere that the patient should take two (2) clipboards with the questions, facts, and current treatment options, as well as copies of your ex-rays, scans, blood-wok, and scientific back-up, meaning, reliable resources and FDA approved tests and treatments. I want to have an MRI, and soft tissue biopsy, and above all, Tumor Marker Tests. I know the Insurance and Hospital delegates are behind the negotiating, and even with a family history, triple negative high risk cancer, I will likely hear that same excuse I have heard for almost two years. What am I, 3 years old? Also would like another bone scan, and a comparison of an old brain MRI with the CAT Brain Scan last week. What physician will actually sit down with a patient, looks at the pictures, c.d.'s, test results and give you a complete physical: None that I have found. There's something nasty about this process which leaves a BITTER taste and a Corporate Controlled "hit" below the Heart (belt). There I go...on and on. Sorry for the testimonials. I promise to edit and delete, as I'll never get the "hang" of "short, succinct, and to the point". Guess I feel humpty dumptied on, lately...never seem to get a straight forward opinion or commitment since I found this dumpy lump. hmmmph.
(((hugs and hope))) Indi __________________ Epitath written in glass shall read: "It's All Your Fault!" Thank you, Nosurrender! You are a meteor, sprinkling brillance and light for those who wish upon stars, fairies, and hope!_________________________________ nosurrender Moderator Registered: 09/07/07 Posts: 661
11/06/07 at 08:04 PM #23 Don't you dare edit and delete! I love your writing. Your words speak to me. I love your humpty dumpty poem. Indi you capture this misery so beautifully. OK- here we go. When God closes a door he opens a window. We gotta climb in and out of that window now. Our docs won't just give us scans because we want them.... who do we think we are asking for such a thing???? SO- we have to - well- what's the word??? Exaggerate? No. That's not it. Hyperbole??? Not exactly. LIE THROUGH OUR TEETH?? Yes! That is the word I was thinking of!! The only way you can be guaranteed to get a scan is to have a specific pain. You can't say "I feel achey all over" because then they think you are depressed or have fibromyalgia. Have I ever told you how much I hate fibromyalgia???? I am not discounting the REAL pain people who are "diagnosed" with it have- I have a problem with the doctor diagnosing it. I know that behind the scenes the doctors consider this a "garbage can" diagnosis.... meaning they can't figure out what is wrong with you and well, after all you are a WOMAN, so let's just give her a fancy sounding name for a disease we are not taking the time to properly diagnose. That is why no one ever gets better from it. Because the REAL problem isn't being treated because the doctor hasn't taken the time to find out what in hell is wrong with you. Anyway- back to scans. You want a scan get specific. Pick a spot- any spot and STICK WITH IT. Mid abdomen is always good because then you get the full scan of your organs. A sharp pain when you move or inhale ..... a feeling like there is a fist under your rib cage.... jump a little when he touches it. HE HAS TO SCAN YOU when you present like that. Bad hip pain in only one hip in one specific spot is a surefire way of getting a bone scan. As for your tumor markers I used to be a big believer in them. Used to insist on them. Thought the sun and the moon rose in them. Last year ASCO announced that they are not accurate after exhaustive studies. And lord knows I had plenty of scares from sudden rises in my TMs. Well, when my cancer came back and was big and ripe and breaking through my lymph nodes my tumor markers were perfectly normal. Same thing for my pal with liver mets. She had mets to a major organ and her TMs never looked better. So don't get worked up over those. CAVEAT: For anyone reading- I am not a doctor. This is not medical advice. If you need a doctor call 911 I am a PATIENT. I have been fighting the system for ever. The only way to cut through the red tape is with a chain saw... So here you go Indi- Let 'er rip! __________________ We Will Prevail lini57 old hand Registered: 09/07/07 Posts: 60
11/07/07 at 08:03 AM #24 I totally agree with Gina, Indigo.. Never delete. Your posts are amazing and I wouldn't want to miss a thing that you have to say. lini __________________ "I'm always steppin' in and out of crap!" Indigoblue queen Registered: 09/08/07 Posts: 94
11/07/07 at 09:55 AM #25 G, Lini, Love you all so much. You are all treasures, buried in the cyberworld, I feel like I found silver, gold, jewels, and a mystery bottle holding the secret letters and magic potients giving dreams, wishes, hope and survival; that word "survivor" has been clarified, dignified, and leads us through the dark woody swamp to this tiny gem; an island of hope, knolwedge, honesty and friendships that run deep; like the underground glacial River Tems. I know how to spell that but I suffer from Chemo-spell. Thank you so much for the spellcheck, Gina. Never had to use it in the past, but now my brainwaves are wobbled and warped; If I tell myself to go left, I go left but leave like the maple tree's glittering gown, and it's threadbare black limbs shivering, I think, well, maybe I should have taken the fork in the road. The idea of a fork makes me feel starved, so I search for a spoon and a pint of pirate's Ben and Jerry's latest icecream. I stare into the freezer; all I find are a few ice cubes and settle down with a glass of airborne cold medicine. Fixing doors, windows, gutters, storm wiindows this week. It's cold outside, 35; walking the dog around 7 a.m., snowflakes' freeezimg flecks of cloud dust, sprinkling twimkling icey forcasts of Winter. There is a "ferrel cat" whom the neighbors just left when they moved. I've been feedin g it for a while; I named him/her "White Cat". It's deaf, I think, has one blue eye and on e green eye. I am build it a little house , and hope I can some meicine i to the poor thing. ] Hesheit, I can barely type; Insomnia has been beastly, lately. Hot, cold, nervous, pain, "Lost in Cyberspace". Get on thiese research sites and it feels like a half an hour went by, as my hb is slamming the backdoor saying, bye bye, by and by/ and on that note, I need to say bye bye. Want to go buy-buy some new pillows, sheets, and Lilly of the Valley buibs. Thank you, so much for your kind words and compassion. (((hugs)))) Indi __________________ Epitath written in glass shall read: "It's All Your Fault!" Thank you, Nosurrender! You are a meteor, sprinkling brillance and light for those who wish upon stars, fairies, and hope!_________________________________ Indigoblue queen Registered: 09/08/07 Posts: 94
11/07/07 at 05:43 PM #26 GINA, FIBROMYALGIA, MYALGIA, OSTEOARTHRITIS, FIBRO- MY - ALGIA Gee, what's a FI, Bro? My Al, gee what? I like GEODES. Fabrocated. regurgitated, Oh? my, oh my, oh my, aching goo and thready nerve and joint erector set. Glue? Elmeralgeria? Hi Fi Bro my al guy insomnia? FIB RO MY ALGIA.... CAN WE DO A POLL? HOW MANY WOMEN FEEL ACHES, PAINS, AND ENDLESS SYMPTOMS LIKE INTESTINAL DISORDERS, RINGING IN THE EARS, HIGH BLOOD PRESSURE, BLADDER AND BOWEL DISORDERS, PLANTAR FACIA, SKIN PAIN, UNEXPLAINED RASHES, FATIGUE, EXHAUSTION, BACK PAIN, ANEMIA, BACK PAIN, KNEE PAIN, ACID REFLUX, RHUMATISM, PREGNANCY/CHILDBIRTH DISFUNTION, HEADACHES, AND THE MOST ANNOYING ONE, MISDIAGNOSED DEPRESSION; THE SIDE EFFECT OF NOT KNOWING WHAT THE HECK IS WRONG? Patients have symptoms, but there are no "absolute tests", signifiantly identifying the actual cause and effect" In a book about Fibromyalgia the author wrote, "Your body is like a CEMENT TRUCK, you must keep the bucket turning; once the cement solidifies as it stiffens without moving, it's hopeless to free it up without crushing it into dust before processing it again. This analagy to the physiology of the human body function makes sense; the "unknown gunk" causing the problems becomes solid and settles in the joints, tissues, bones, spine, feet, hands and brain. Made sense. I lost weight, followed the guidelines, went to a chiropractor, physical therapist after physical therapist, orthapedic surgeons, rhumatologists, pulminary specialist, allergists, the endless list of "DUH"ctors. Finally went to a pain specialist, brilliant physician. He told me I did NOT have Fibromyalgia, in fact, in his opinion it's the biggest JOKE DISEASE he was treating . He believes it's autoimmune disorder, perhaps brought on by exposure to heavy metals, polution, poisonous compounds, pesticides; and genetically enhanced, naturally; that many suffer with the pain for a lifetime, and never seek medical assistance. He prescribed heavy duty drugs; methadone, diuretics, some big guns anti depressants, and physical therapy, deep massage, and swimming... Chlorine might be one of the chemicals affecting our immune system. I never took the drugs prescribed by the Pain Management Specialist. What comes after Methadone? Heroine, morphine, and the psycho therapy drugs for schitzophrenics? So, I decided to be an advocate for me. Forget this doctor stuff; I did find a fantastic physical therapist who gently guided me to manage self help, avoid nerve damage, and generate diet and exercise suitable to my needs. It really helped, and until the breast cancer, I was doing great. The physical therapist moved away; he was so great, using a combination of gentle herabl remedies, stretching techniques, and diet low in salt, fat, and starches; odd, this was a long time ago, and now I'm getting tested for Celiac Sprue, an immune disorder caused by a genetic malfunction induced to walke up when WHEAT, BARLEY, RYE, OATS, AND ALL OF THEIR BYPRODUCTS ARE CONSUMED. AND I USED TO LIVE NEXT TO A WHEAT FIELD AND A GRAIN ELEVATOR. HMMMMMMMMMMMMMMMM. WHAT DO YOU THINK ABOUT CREATING A 'THREAD' FOR BREAST CANCER SURVIVORS WHO LIVE, SUFFER, AND QUESTION THIS MISLEADING DIAGNOSIS FOR 'OTHERWISE UNKNOWN' LONG LIST OF PAIN AND THE HEADACHES EXPERIENCED IN SEEKING OUT THE 'WHAT AND WHY' IS IT? I wonder, could there be a CONNECTION to Fibromyalgia, Breast Cancer, and the autoimmune disorders so frequently diagnosed, misguided, and given to our dilemma as we are called hypochondriacs, ignored, and end up finding our own "dense breast lumps"? I hope you can simplify what I am trying to say...it's so difficult to cut and edit when scrambling to find answers and to express what "might be" a likely cause for many cancers. DIAMONDS, DIAMONDS, DIAMONDS ARE A GIRL'S BEST FRIEND!!! I read in Cancercompass, yesterday, that diamond particle/dust may eradicate cancer; studies and research has been completed using nanoparticles from diamonds; http://www.cancercompass.com/cancer-news/1.13358,00 The name of the article is: "Could Tiny Diamonds Help Beat Cancer?', dated October 30, 2007; lots of interesting information on this site. Don't know if you have to join, it's free. I am getting there, but can't see; lost a lens in my glasses and can't see too well with these old ones. I just read it yesterday. It's on page 3 or 4 of news on cancer. Sorry, but it's a fun and interesting article. I hope you can find it. THE ABOVE HTTP// GETS YOU TO THE SITE, BUT YOU HAVE TO NAVAGATE FROM THERE. . iNDI __________________ Epitath written in glass shall read: "It's All Your Fault!" Thank you, Nosurrender! You are a meteor, sprinkling brillance and light for those who wish upon stars, fairies, and hope!_________________________________ nosurrender Moderator Registered: 09/07/07 Posts: 661
11/07/07 at 09:16 PM #27 VERY INTERESTING!!!! I WILL start a new forum!! Well let's see if we can compare notes.... Before BC I was a chef and caterer. I was lifting and bending and twisting and carrying very heavy objects.... It is kind of hard to cater a party for 1000 in the middle of a Polo Field without having to carry anything. My back hurt. But so did my stomach. My stomach hurt REALLY BAD. It got so bad that I lost about 20 pounds in two months. I was told I had IBS. Had colonoscopy and was clean as a whistle. Had all sorts of tests- was told I had IBS AND Fibromyalgia.. I said HUH? Meanwhile I am cranking out food, doing tv cooking spots and loving my life. I was in pain but I kept on going. Then I got worse... The stomach pain got worse. It got so bad my back was really hurting. In fact, I was complaining more about my back than anything else. I was told that my "IBS" was radiating to my back. and don't let's forget about the fibromyalgia.... One day I was so bad I had to see my GI doc as an emergency. I kept telling him about my back and now my leg hurting. Well, he finally got a clue. He said, who is your PCP? I told him I didn't have one- just the gyn. He set me up with a new PCP in the same group and she saw me right away. Believe it or not this doctor LISTENED to me. Her response? I am sending you next door for an MRI of your spine. MY SPINE? But I have IBS and Fibromylagia! NO I DIDN'T. I had 4 herniated disks, spinal stenosis and was, in a nutshell, completely screwed up in my back. I didn't have IBS radiating to my back... my BACK was causing my stomach to flip out. I didn't have Fibromyalgia causing me pain... my BACK was causing me pain. SO YES! I DO NOT ACCEPT EITHER OF THOSE DIAGNOSES AS GETTING TO THE HEART OF THE MATTER. I see too many women who suffer needlessly and endlessly because they have some "syndrome" invented by doctors who are too lazy to go further. In fact, I am highly suspect of anything that ends with the word "syndrome" Keep fighting the good fight my Indi!!! Get to the bottom of it. And I will create a new forum about this just for you! Love, g __________________ We Will Prevail cowgirl queen Registered: 09/29/07 Posts: 93
11/08/07 at 10:52 AM #28 Angel, I didn't know you were doing fills. I have a trick I did. You drink warm water and eat crackers(saltines) after your fill. Before your fill, take a couple of advil. The warm water and crackers was given to me by my mom, they have used it in pain clinics. For me it seemed to lessen the intial pain of the fill. I hope it helps you. lini57 old hand Registered: 09/07/07 Posts: 60
11/08/07 at 08:01 PM #29 From the Lobular Story thread: "My Lobular Story starts in 2002 with a negative stereotactic biopsy for calcifications. Fast forward two years and I'm just not feeling well. Have an eye twitch, metal taste in my mouth, severe muscle achiness, heavy periods, bowel issues, a couple of near fainting spells, and stinky breath. This was off and on for about a year." Also had the low back pain, vertigo, reflux, and costochondritis that I forgot to mention. I feel blessed my issues went away after my lump was removed. Were they all in my head, or was my body telling me something?? Hmmm.. come to think of it both my mom and her sis have been dx'd with both Fibro and BC. WTH?! Strange! __________________ "I'm always steppin' in and out of crap!" Angel42 lifetime member Registered: 09/07/07 Posts: 421
11/08/07 at 08:46 PM #30 Cowgirl .. I wish I had seen your post before! I've been done with my fills for a few weeks now. I was ready to try anything! I had to resort to darvocet and being out of commission for 5 days during my last 3 fill sessions. Wow, warm water and saltines huh? Very interesting! I wonder what other kind of pain that might help with because I sure have a lot of them! I started out taking advil before I went for fills but toward the end had to resort to a muscle relaxer. Thanks for your advice! Angel
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Angel42 lifetime member Registered: 09/07/07 Posts: 421
11/08/07 at 10:12 PM #31
Indi, Gina and Lini ...
Here I am waving my hand and nodding my head vigorously!!! I was dx'd at age 22 with Fibromyalgia. Chronic pain, chronic fatigue, chronic IBS .. you name it! Muscle relaxers, pain pills, anti depressants came along with chiropracters, orthopedic doctors, physical therapists. I had no luck with any of them. One thing I could always count on were days of feeling like I was run over by a mack truck. Love, marriage, then 7 years of trying to conceive resorting to charting temperature and scheduling sex up to fertility drugs until I finally saw a fertility specialist who saw my progesterone levels were too low to sustain a pregnancy. It took 7 years to see that? Well, that's another story. So I went off all my fibromyalgia meds and went on Prometrium (progesterone). A month later I was pregnant with my first beautiful daughter. After delivery I managed for awhile and slowly started back on the meds. Life went on and my pain and fatigue often consumed it. My husband and I worked different shifts so I was like a single mom and after work would take care of our girl. Finally fall asleep alone in bed exhausted and another day without exercise or taking care of me. That marriage ended. Ignored my health and pain and fatigue. If there was a flu or a cold to be had I would get it, and it would inevitably knock me for a loop! Finally got my life in order, met my dream man, and started caring for myself again, not necessarily in that order. Back to trying to find doctors to get to the bottom of my pain and fatigue and help me manage it. Then the pain that got so severe in my neck that it was threatening my being able to work turned out to be a herniated disc. I also have degenerative disc disease. I had steroid shots, physical therapy. Pinched nerves. I had neuropathy in my arm that I attribute to my neck pain. All the same symptoms my brother had at about the same time. Very bizzare. He had surgery and got relief. I was told they wouldn't do surgery for me, as it would exacerbate my Fibromyalgia! WTF??? You mean I have to just live with it??? But I can barely use my right arm anymore, it's so weak! I'm right handed! I have children to pick up and take care of! Sorry, m'aam. It was the first time in my life I actually hyperventilated. I couldn't breathe! Thank God my sister was there to give me a brown bag because I had no idea what to do! I went in thinking someone would finally do something concrete for at least one of my pain conditions because they did for my brother. I was floored. Okay, back to trying to find a better answer. Had been on Vioxx and Bextra before they were recalled (oh yeah, forgot to mention the osteoarthritis). Now trying Celebrex before the FDA finds a problem with it. I was sent to a Rheumatologist and a Neurologist. Determined the numbness in my fingers and toes was Raynauds Syndrome. Oh great, another syndrome! Trying to find a combo of drugs, expertice and exercise to help me and wham I was 40 and pregnant. Huh, me??? But I can't get pregnant without really trying and drugs! So off all the pain drugs and focused on my pregnancy and bringing a healthy miracle child into this world. Funny how I always felt my best in life when pregnant! Must have something to do with the hormonal changes. I got to stay home with my second daughter unlike my first so I planned on nursing her for at least 12 months. For one reason or another and bad timing for total weaning 12 months turned into 17 months (although we were down to only a bedtime nursing) when I accidentally discovered a lump in my left breast. I was 42 years old .. some would say an old mom but relatively young for BC. The lump was likely there for years and with lumpy milk filled breasts I wouldn't have noticed it and before that, well, who knows? I was exhausted from having a baby and nursing all that time. My pain and fatigue was back with a vengeance! But I had to start a different journey, the one that brought me here. So that's my story with many omissions but in a nutshell as best I could do with two young girls interrupting me! I believe there's definitely some kind of autoimmune disorder and breast cancer connection for me. I've always been told how healthy I was except I had a low immune system or poor immune system. Whatever! But I'm the first and only out of 6 women in my immediate family to have BC and I'm the youngest.
Ironically I saw my rheumatologist today. I have knee pain that started after I started on Tamoxifen and had gotten worse since my hyster/ooph last week. He wants me to go see a doctor for orthontics because of the high arch my feet have. But I've been home so much this year I rarely even wear shoes ... oh, maybe that's the problem. Does it ever end??? You don't have to answer that because I already know the answer. How will it be possible to get better as I age and now cope with this beast that only brings a whole slew of other issues with it? So no, it never ends my friends.
Love you guys, Angel nosurrender Moderator Registered: 09/07/07 Posts: 662
11/08/07 at 10:56 PM #32 Kathy I wish I knew that trick! I got a huge fill up on Tuesday and I feel like a blowup doll. Indi, Lini and Angel- Oh my how odd and how amazing it is that our stories are so similar. I remember reading that any kind of inflammation can cause cancer growth. I can't remember why exactly without looking it up because my brain is so fried tonight. But that seems to be the common denominator here. I still have to create the Syndrome thread- I think we need it. Big Gentle hugs all around.... Love you, g __________________ We Will Prevail lini57 old hand Registered: 09/07/07 Posts: 60
11/08/07 at 11:05 PM #33 Gina ~ So how big are the girls now?? __________________ "I'm always steppin' in and out of crap!" Indigoblue queen Registered: 09/08/07 Posts: 94
Today at 02:41 AM #34 In my youth, an old-time family doctor noticed a cyst on my forhead. He said in the old days, cysts like it were treated by using a large piece of wood, or a gigantic medical textbook and slamming the affected area flat. I asked him if such a blow to the head would cause a concusion, inflammation, infection, or what? He referred me to a dermatologist, who used a tiny needle to remove the fluid; it grew back; eventually, had a surgeon remove the thing. Then, I got one behind my ear. Went to the Cleveland Clinic to have it removed. The surgeon told me, with any inflammation or cyst, I should give it immediate attention; and in her opinion, a cyst of any kind was a precursor to eventual cancer. Great...I was in high school at the time, and had been in a horrific auto accident. The cysts were supposidly caused by the blow to my head. I rather thought they were full of it, at the time; smarty pants nerd, figured they were a bunch of old farts. I was trying to get you to a site of Wikpedia which defines the word: Syndroms, offering numerous expanations, derivities and an index of diseases ending with the word "Syndrome". I was laughing my arse off, and so wanted to share the silly definitions pathetically referred to as a "Syndrome", for lack of a better diagnosis or reference. Interestingly, Inflammation is a description involving these "unknowns", and cancers following the "sin-droma". I enjoy Wikpedia, the remarks, and especially the links. Can't take a lot of it too seriously, however, it is a great source for seeking out opinions, information and variables. You can visit, join, it's free. It has every topic you can imagine; and more. You can add your opinion, read other opinions, or ignore it; So much like my old family doc's theory regarding smashing a cyst with his gigantic medical reference book... If we all have cysts, does that make us "cysters"...ewwww, sorry...thought it was humerous; thinking of this old doctor and his peculiar ideas regarding medicine, hypodermic needles as big as a horse, and an overdose of antibiotics for any and every ailment. Food for thought....I'm in great need of mint chocolate chip at the moment...might have to walk in the clear cold night and get a pint or two in pink and green. Have a lovely weekend, be well, and remember: It's not your fault. luv Indi __________________ Epitath written in glass shall read: "It's All Your Fault!" Thank you, Nosurrender! You are a meteor, sprinkling brillance and light for those who wish upon stars, fairies, and hope!_________________________________ lini57 old hand Registered: 09/07/07 Posts: 60
Today at 11:19 AM #35 Like the "cysters", Indigo. I've got one on the forehead, one on my right ovary, one on my right kidney, a ganglion on my right foot that's being surgically removed on 12/17. It was supposed to be done two years ago before I got on the BC rollercoaster on the left side. Put on hold two years ago. Now, I'm dreading this surgery probably the most of all. So sick of it all. Hmmm, now wondering if cysts on the right mean BC on the left?? I think we hijacked this thread and g needs to move it over to the new "drome" one. Is there cyst syndrome?? __________________ "I'm always steppin' in and out of crap!" nosurrender Moderator Registered: 09/07/07 Posts: 662
Today at 01:06 PM #36 I can move the whole thread- but that would take away the surgical part So I will cut and paste my posts here that are Drome worthy and place them in the new Drome thread. If you guys can do that with yours then we are sufficiently Dromed. __________________ We Will Prevail nosurrender Moderator Registered: 09/07/07 Posts: 662
Today at 01:07 PM #37 The girls are making Pamela Anderson look like an ironing board. TOO FRIGIN BIG! But he is giving them an extra stretch because the rads are going to shrink them. __________________ We Will Prevail
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