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CHERI*ANN7's Photo CHERI*ANN7 Posts: 3,354
9/16/14 1:52 P

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this is my story...

Had a hysterectomy that was way overdue as I had had a prolapse for a long time. The Dr. did testing to see what she was dealing with and found many cysts. She opted for a C-section type surgery so she didn't rupture any of them, and after surgery she said everything looked good. She did the Braca tests, Lynch tests, and a couple of others...they came back negative. ...then the pathology came back. One of the cysts showed cancer cells so I was sent to a Gyne Oncologist who just transferred to our hospital. She wanted to do exploratory surgery, and I agreed. She took lots and lots of biopsies...the flush was negative....but when pathology came back........again, cancer was found on my bladder, colon, and pelvic lymph node. Diagnosis is Primary Peritoneal Cancer. So we started on chemo ...I am having my 2nd Thursday. Every four weeks - 6 treatments in total. Hoping to get them all in on schedule and be done on Dec. 11th and be in good shape by Christmas!! It's amazing they found this when they did.....and I am getting lots of support.

Edited by: CHERI*ANN7 at: 9/16/2014 (13:53)
CheriAnn

12-7-06 SW213

05-15-13 CW 195.
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MOM2ACAT's Photo MOM2ACAT SparkPoints: (160,547)
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9/10/14 5:00 P

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Welcome to all of the new members! I'm sorry that I haven't checked into this thread sooner.

Please check out our chat room thread, that is where most of the "action" is!


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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9/10/14 2:52 P

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Hi All:
I read your posts to get a boost of good thoughts and gratitudes when I am feeling down. Today in recognition of September being Blood Cancer Month, I will share my story. In 1998, while washing windows on a ladder, I had a sudden loss of leg strength. Fortunately I made it down before collapsing. Next day at work I started walking down a hallway on one side and ended up on the other side. Dr's visit and lab work indicated extremely high platelet counts. Hematologist did more work up and a provisional dx of chronic myelogenous leukemia and I started oral chemo. I hit the wall of age and treatment in 2002 and had a bone marrow biopsy that showed I did not have the genetic markers for CML, so diagnosis was changed to Essential Thrombocythemia. It is interesting that the oral meds have not changed since this started, only the dosage.
Unfortunately long term chemo for blood cancers can create some medical issues too. So I have chronic anemia and CKD that is treated with Procrit injections on a regular basis.
I am grateful that my cancer is managed and relatively stable allowing me to establish a lifestyle that includes friends, travel, exercise and creative endeavors. There have been some tough times, but more good times in the past 16 years.
I hope this is encouraging to other blood cancer survivors who may be facing many years of therapy.

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SISTERGOOSE's Photo SISTERGOOSE SparkPoints: (2,709)
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9/8/14 3:22 P

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Thanks Cassiecat!

Just call me Goose!


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CASSIECAT's Photo CASSIECAT SparkPoints: (121,180)
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9/7/14 8:11 P

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Hi SisterGoose - welcome to this team! I am very new here, but they're a very nice group of people. :)

Hit my goal weight 9/16/11 and aim to remain there for good!


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9/7/14 3:03 P

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In brief: Ovarian Cancer stage 3C in September 2011. Multiple recurrences with nearly 80 chemo treatments since then...and consequently lots of steroids and 50 extra pounds. emoticon

I need to find a way to stay as healthy as possible and get rid of some of the weight I have put on. I recently joined a cancer wellness class that includes yoga, pilates, cardio and strength workouts. I promised myself to get to as many classes as I physically can manage, but also to focus on eating healthy.

Thank you so much for letting me join you! emoticon

Edited by: SISTERGOOSE at: 9/7/2014 (15:05)
Just call me Goose!


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FABNATALIE's Photo FABNATALIE SparkPoints: (1,744)
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7/17/14 10:25 P

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My cancer journey started with a phone call on August 19, 2011 saying that my bone marrow biopsy showed I had Acute Myeloid Leukemia. No time for second opinions, it was literally pack your bag and go straight to one of the local cancer hospitals-thankfully we have two near me. It didn't fully sink in that I had cancer until the first time the nurse hooked me up, which was late in the night. THat was the beginning of a 45 day stay, then subsequent week stays once a month for a few months. Thank the good Lord I have been in remission since mid September 2011-went into remission after the second induction during first stay. So far, each check up shows good numbers in normal range. After my next check-up in September I will have two more years to go to be considered "cured". For now, I am trying to fight an eating disorder so that I can keep my body in fighting condition. I am also planning my wedding to a wonderful man who has taught me real love. THe coolest thing is my 16 year old son attends each oncology check with me whether my fiance is available or not.

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6/29/14 6:49 P

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Great stories here. Thanks to you and everybody for sharing them. Just diagnosed 3 months ago, planned to die this year. Now I'm planning to live at least another 7 years.

Muscle is life. (Fat is death.)


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5/24/14 4:32 P

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I found the breast cancer two months after a normal mammogram about 14 years ago. It was very aggressive so we did surgery. Chemo, radiation and more chemo followed by ten years of pills. Because I was adopted it was difficult getting history but did find out that both my mother and aunt had breast cancer. Mom died at 74 of ovarian cancer and Dad died at 82 do lung cancer. Meanwhile my adoptive mom is still alive at 100. My adoptive dad died at 76 of multiple myeloma. Life is good. I continue to be watchful as doc says not actually cured. Each day is an amazing blessing.

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GOLDEYGRAD's Photo GOLDEYGRAD SparkPoints: (13,088)
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10/30/13 10:39 A

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Since I'm relatively new to the team, I'll share my story.

Here is some family history - my maternal grandmother had endometrial cancer in the 40s - she was treated with radiation and lived to be 84. In 1973, my father was diagnosed with colon cancer. He passed away in 1974. In 1996, my older sister was also diagnosed with colon cancer. She had surgery to remove her rectum, chemo and radiation. She is nearly a 20 year survivor. In 1998, my oldest sister was diagnosed with ovarian cancer. She passed away in 1999 after stem cell replacement. The common symptom in all of them was hip pain.

The summer of 2011, I was getting ready to have knee surgery to correct years of arthritis as a result of degenerative cartlidge disease. My left hip was starting to flair up, but at that point, I figured it was because my right knee was out of whack, and didn't think another thing about it. I had my knee surgery, and my knee got much better. My hip, however, got worse. In April of 2012, I had brought up the hip pain so many times to my primary care physician that he sent me to a rheumatologist. The Rheumatologist examined me, did a bunch of blood work, and sent me for a spinal MRI. The MRI showed some stenosis in my spine, but additionally, it showed a large cyst on my left ovary. My blood work showed I was anemic. Knowing my family history, he told me to go to my gynocologist immediately.

In May, I got in with my gyno. He proceeded to ask some questions - yes, I did have very heavy periods. I had gastric bypass in 2009, and heavy periods following bypass surgery were not uncommon. That could also explain the anemia, because my body doesn't process iron well. The physical exam showed no abnormalities, but to be on the safe side, my gyno ordered a vaginal ultrasound. The first ultrasound showed that the cyst on my ovary was gone (yay!) but I had a number of fibroid tumors. It also showed an "area of concern" in my uterus. My gyno didn't have a good feeling about the ultrasound, so he sent me back for another at the end of June. Fast forward to the 4th of July. My husband and I were at our beach house for the holiday. On July 3rd, we were out eating crabs with my sister and her hubby, and I started to feel kind of crappy. I went home early. I woke up the next morning, bent over the sink to wash my hair, and got a horrible pain in my side. I nearly passed out. I was down for the rest of the vacation - I went to a walk in clinic and they said I had a virus. I didn't get better, and was retaining a TON of fluid. Two weeks later, still feeling horrible, I went to my primary care - he did a total blood workup, and found NOTHING. He sent me for an echocardiogram concerned my swelling and symptoms were as a result of myocarditis.

In late July, I had the 2nd pelvic ultrasound in the am, and the echo in the afternoon. On the way home from the echo, my gyno called - I had a leision in my uterus 2mm long. He immediately referred me to a gynocological oncologist at the University of Maryland. They did a uterine biopsy, and determined I had pre-cancerous cells - they scheduled me for a hysterectomy, and told me that because it was precancerous, they had caught it early, and there would likely be no more treatment. My oncologist (who is my hero) also said to me that my family history was a concern - it was quite possible I had Lynch Syndrome - a mutation in one of my genes that can lead to an increased chance of having colon cancer, ovarian cancer and uterine cancer.

I had my hysterectomy on August 22, 2012. When I woke up in the recovery room, my husband was sobbing. I knew at that minute it was more than pre-cancerous cells. My official diagnosis - Stage 3 2c endometrial cancer - I had adenocarcinoma in my uterus - and it had spread 4mm into the lining. They removed 21 lymph nodes. Of those, 17 were cancerous. Two weeks later, I began sandwich therapy - 3 cycles of chemo (carboplatin and paclitaxel), followed by 25 radiation treatments, 3 brachytherapy treatments (internal radiation), and then 3 more cycles of chemo. The did a CT Scan two weeks after my hysterectomy - No Evidence of Disease. They have now done 3 other CTs (I won't have anymore) and I'm still NED.

So, I've been in remission for 14 months. I also had genetic testing, and I did, in fact, test positive for Lynch Syndrome. My surviving older sister also tested positive. We do not know if the gene mutation came from my Dad or my Mom - as her mother also had Endometrial cancer.

I am an advocate for gynecological cancer awareness now. I'm happy to be a survivor, but my cancer took so much from me - a chance at children is what I miss most. I'm trying now to find my new normal.

I write a blog - Learning to Fight Like a Girl. thehappyhysterectomy.wordpress.com/

So, that's my story.

Be the change you see in yourself.
RNY 11/9/2009
Endometrial Cancer DX - 8/22/2012
Remission Date - 8/22/2012
Treatment End date - 2/18/2013

Visit my blog! Learning to Fight Like A Girl thehappyhysterectomy.wordpress.com/


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WILDKAT781's Photo WILDKAT781 SparkPoints: (128,281)
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9/20/13 1:46 P

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Well, I thought it was about time to share my story.

Most of you know that my Daddy has cancer. I am his caregiver. My Daddy lives with myself and my husband on a small farm that I grew up on. Daddy gave it to me as a wedding present.

We were actually lucky in the way that Daddy was diagnosed. In early April he had a cold or something and was miserable. We kept telling him to go to the doctor. Well, none of his regular doctors could fit him in so he went to a walk in clinic. The clinic did x-rays to check for pneumonia. (None of his other doctors would have done that..they have all stated as such) The x-rays showed a spot on Daddy's lung. Within a week it was biopsied. (They collapsed his lung during this and he spent three weeks in two hospitals eventually requiring surgery to re-inflate the lung. ) The biopsy came back small cell lung cancer. No cure.
We were told it had probably spread and given about 3 to 6 months. Then at the second hospital they did a PET scan (the original hospital had scheduled one to confirm that it had spread but did not complete before his transfer for collapsed lung) The cancer had NOT spread! His doctor said it was very rare to actually diagnose small cell cancer before it spreads and she has only seen a few cases...she ordered the test redone to confirm - second PET showed same thing...cancer has not spread outside the lung. Now we have been given a 2 to 5 years prognosis. Being that Daddy is 78 and no one else in his family ever lived past 76 this is a very good prognosis.
Since the diagnosis Daddy has had 37 radiation treatments and multiple chemo treatments. As most of you know - this is very rough on him. He expected the radiation to go smoothly because 9 years ago he had 44 treatments for prostate cancer that he beat. It did not go smoothly this time. He was quite sick during the treatments but is getting better since he is just on chemo at this time. He has to have blood work twice a week and usually a transfusion once every couple of weeks.
This has been scary for him as well as me. Daddy's brother died from small cell lung cancer that had spread by the time they found it. We all keep remembering how hard Uncle Kent had it.
Well, I'll wrap up my book now...LOL...I am so glad I found this team and very honored to be its leader. You all have been a huge help to me and I hope I can help you as well.

Kathy from southern West Virginia

Leader - Class Of 2006


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7/16/13 2:49 P

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Two years ago my husband was diagnosed with stage four throat and neck cancer. He has gone through radiation, and is still going through chemo. The last report was that the tumor they are watching is a little larger, but the cancer is not quite as active. There are times it is very difficult for me to cope with his changing moods and unreasonableness. I don't know if it is just me but I pray that the Lord give me the wisdom to do whatever I should.

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LASTBASTION's Photo LASTBASTION SparkPoints: (3,257)
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5/4/13 6:03 P

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I started a blog to help me through my ovarian cancer last year. It helped me emotionally deal with it and kept my family & friends updated without having to ask me questions I was too tired too answer most of the time.

battle-the-o.blogspot.com/2012_09_12
_a
rchive.html


I copied this entry from October 4th, 3 days after the surgery and I was still in the hospital.

One of my Facebook friends said she had been following my posts lately. She said I really was an inspiration for so many of us and that I was amazing in sharing this experience with my friends! She was just curious as to what my symptoms were before I was diagnosed or if I had any symptoms? She hoped I didn't mind her asking...and she thanked me so much for sharing and she's praying for my full recovery every day!

I thought I'd share my answer with everyone.....


Ovarian Cancer is called the silent killer for a reason, the symptoms are minimal. Like my hips and back ached.... just thought I was over working myself or the mattress needed flipping. My period was heavy this time last year, would bleed for a week, stop a week, bleed a week.... it would stabilize, then miss a month, only to stabilize again. I was getting night sweats and the normal signs of menopause. I'm 48 years old, seemed normal to me when my period stopped last May.

I was diagnosed with gall stones this time last year and I think if they would have done a CT scan instead of just the ultrasound, they may have caught it in the early stage. Since I was still receiving unemployment benefits while I was attending college at that point I didn't qualify for the community program (I made $2100 too much). I blamed a lot of what was going on (pain wise) on that. Not realizing it was my right ovary that was really the culprit. The kicker was I lost 40 lbs (I had gotten very heavy there for awhile and attributed that to bad genes, age, and lousy eating habits), but my stomach dimensions didn't change. I figured since I was about 2-3 months away from graduating I would just take care of it after that.

All I can really say (in my own personal case here) is that being in school and not having health insurance was still NO EXCUSE for not having a yearly visit with my OBGYN. Do ***NOT*** take it for granted and if you have no insurance, make the time to register with the county where you live for help. I feel if that I had just spent the money for the office visit I could have caught this sooner. I had a little money but was more concerned with other obligations (like money for gas to get to my clinical sites) than my health.

I never thought for one second that I could possibly have ovarian cancer. It's not something you think about... unless you're a hypochondriac. LOL. But like I said, I can only recant my own reasoning why it got to this point.

A woman I worked with a few years back (that I still have contact with on Facebook) had went through (is still going trough) breast cancer and she made a blog about it. Her experience was inspirational to me. It was right about that time that I knew I had to see a doctor yet STILL procrastinated long enough to finish school (reiterating here but I never thought I could possibly have ovarian cancer). And I figured if she could be that inspirational to me, maybe I could inspire someone else with writing this all down and sharing my experience. Maybe another woman will not have to go through what I did if they pay attention to their health.

The blog helped me mentally and spiritually to deal with this. Plus it fielded a lot of inquiries from family and friends so I wouldn't have to answer the same questions over and over again. Everyone gets an update on how I am doing and where I am as far as progression and recovery. This type of illness is very personal and serious. Sharing it, and my feelings about it, not only helps me but allows everyone to be closer to me through it.

So I definitely don't mind the inquiry and appreciate all the love, concern, caring, well wishes, and prayers. It all helped me be stronger and know I wasn't alone.

Edited by: LASTBASTION at: 5/4/2013 (18:03)
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time.
~Thomas A. Edison



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2/19/13 7:47 P

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I was diagnosed with uterine papillary serous carcinoma in May, 2011, which is grade 4 and metastizes early. Fortunately following a radical hysterectomy and 39 lymph node dissections, no other cancer was found but there were lose cells found in the abdominal wash so my oncologist recommended chemo and radiation. Chemo made me more exhausted than I have ever been in my life and I was unable to eat properly due to nausea so I had supplemental IVs. I also had to take Neulasta injections (which the hospital charged $13,000 apiece for) and I had pneumonia 3 times during the course of treatment so treatment took a bit longer than originally anticipated. When it came time to discuss radiaition the radiologist was a bit of a jerk. He told me that the lympocele my oncologist had all ready diagnosed as noncancerous WAS cancer and that I would need 35 external and 3 internal treatments. I demanded more testing and when the PET scan showed no cancer I elected not to do the radiation treatment because I was in a serious relationship with someone (whom I eventually married) and I didn't want to give up having a physical relationship with him.
I might add here that I was widowed 14 years ago so I did not have the support of a spouse and 18 days after my radical hysterectomy, my mother, who lives with me, had a spontaneous hip fracture so I was not only dealing with my own problems but hers as well. Fortunately I had great friends and some wonderful neighbors who helped me with my numerous trips to the hospital. I am now on survelliance and just had my 4th "wonderfully normal" exam today. I go to the oncologist every 3 months and have a yearly cat scan. Looking back, dealing with cancer wasn't as bad as I thought it would be. I received optimum care and, aside from being "down" for 7-10 days following each chemo session, I pretty much lived a normal life. I started dating a new man, went out with my female friends and family and did just about everything I wanted (except exercising, I simply didn't have the energy to do zumba or anything like that). I even managed to slip in a few martinis now and then! I did lose all my hair following the first treatment but it has grown back and my life is "great"! If God brings you to it, He'll bring you through it. Just remember that whatever you're going through is temporary and will be over before you know it and you'll bounce back, as good, maybe even better, than ever.

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10/1/12 5:26 P

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Wow, what a tough year you have been through, Moon_litskies. But it sounds like you have toughed through the worst of it and are looking to the future. Keep us posted here as you work through your battle, and if we can help, reach out. My best to you!

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10/1/12 2:57 P

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At the end of January of this year, I was diagnosed with cervical cancer. In a whirlwind I was advised to have surgery to have a radical hysterectomy. That was done on the 8th of February. At my March follow up appointment, the surgeon was concerned about the edges so sent me for radiation and chemo treatments. It was 28 days of radiation, with four chemo sessions. The chemo didn't make me loose my hair, but between the two I got extremely tired. I had to have an internal radiation treatment and that was done on May 31st. Now I am just rebuilding my strength and going for follow up appointments. Hopefully it will not come back. For now I need to get back on track and loose the weight I gained back, plus the rest to make my goal.

Moon, WA
~the perfect picture of impatience
"Think highly of yourself because the world takes you at your own estimate.”
"To live longer, laugh often and lie about your age."

"Sometimes we need a gracious warning we have veered off the high road."


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9/23/12 8:33 A

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Three years ago I was diagnosed with chronic myeloid leukemia in my regular annual checkup. I was put on an daily chemo pill (a miracle pill) and fortunately for me, I am in a stable remission now, although with many side effects from the chemo.

Hugs to all of you out there fighting your own personal battles with your version of this dreaded scourge. May the force be with you!

emoticon

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9/22/12 1:11 A

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15 year survivor of Hodgkins Lympoma. I had 12 rounds of ABVD chemotherapy over 6 months time.

Amy
Colorado
Mountain Time Zone

~Leader (NEW)Rainbow of Faith, Hope and Cure Team~

~Leader- V.I.P....Virtually Inspired Peers~

~Co Leader- Living Life on a Shoestring~

~Co Leader- Make Life Happen~

~Co-Leader SP Class August 30-September 5th 2009~

main.acsevents.org/goto/amyclifton


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SHIELDAC's Photo SHIELDAC Posts: 735
7/28/12 9:30 A

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i had Hodgkin III --after 6 mos of same chemo treatment i am cancer free. my timeline is starting treatment 4-11 = no active cancer cells 9-11, cancer free 12-11 & still cancer free 7-11 we are blessed

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ALLENJOSEPH's Photo ALLENJOSEPH SparkPoints: (66,882)
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6/11/12 10:53 P

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I won't only cross my fingers for you. You are now a part of my prayers, and one of my adopted Sisters!
emoticon & Prayers, Janis

Nothing Is Impossible with God.
Each Day Is A New Beginning.
When You Draw Close To God, God Will Draw Close To You.

Spark People Team Leader, GLITTERGIRL, from Team, "I Can't Do This On My Own", helped me reach my goal in 2012. I was able to maintain my weight for several months, but now I have to get serious again as much of my hard work I let go of, putting my focus on another issue. I will keep on, until I get back to my goal.


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6/11/12 10:13 P

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The week before Thanksgiving 2011, I noticed a hard bump on my collarbone after working out at the gym one night. I'm incredibly clumsy and accident prone, so I figured I pulled something while lifting or possibly even broke my collarbone in a flag football game earlier in the week (I have a high pain tolerance and hate going to the doctor, so this wasn't so unusual for me).

I was going to visit my parents that weekend, so I told my mom (a Navy nurse for 25 years) about the bump and had her take a look at it when I got to their house. She was concerned, so we went to a nighttime pediatric clinic (I'm 27 but it's the only place that was open). After a 10 minute appointment, the RN told me she thought I either had lupus or lymphoma, and that I needed to see an oncologist right away. Having had no other symptoms, I was absolutely shocked.

Forty-eight hours and five tests later, an oncologist confirmed that she thought it was cancer and scheduled me for a biopsy. Three days after that, I was officially diagnosed with Stage 2A Hodgkin's Lymphoma.

I began ABVD chemotherapy the week before Christmas and was scheduled for 12 courses (a course every two weeks) and then 21 days of radiation. After four courses, I had my first follow up PET scan which returned cancer free. My oncologist made me get an additional 4 courses of chemo for good measure. I was able to finish early and avoid radiation entirely, which was a relief considering all of the possible long term health consequences of radiation for someone my age.

I've now been in remission since March 30th and have my three month follow up at the end of this month. Cross your fingers that it'll be good news!

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4/16/12 5:45 P

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Hi, my name is Janis, and on November 19th of 2008 I found out I had breast cancer. It was 1st stage infiltrating ductal carcinoma in my right breast. Within a day of finding out, the following day an appointment was made to see a surgeon and that took place on the 21st. Things moved along quickly. I remember when the Surgeon gave me my options, I thought, "Gosh, first he's telling me about the mastectomy!" I thought gees, why would he even suggest that with 1st stage. As he told me about having 6 weeks of radiation it didn't take me long to decide I would have a mastectomy. I had that decision made within 2 hours of leaving the doctor's office with my Husband. Before I even told a few people close to me about my decision, they asked me if I was going to have a double mastectomy. I said why would I do that when I didn't have cancer in both breasts? It wasn't more than maybe a few hours of saying that, that I decided that I did want a double mastectomy. I didn't want to worry about mammograms. I was told because I had calcification that I had for many years in my right breast, the same problem had started in my left and I would probably have the same problems. On December 8th of 2008, I had a double mastectomy, and was blest with the best of doctors. I began with the reconstrutive surgery right away. I feel my faith in God helped me through this all. The idea that I might die through this did cross my mind, and I did feel prepared for that. I never had to go through kemo or radiation. I did have the oncotype test and my Oncologist helped me decide to take an anti cancer drug. I was on Femara, and now I'm on Arimidex. I'm also 66 years old now. I'm involved with 2 Cancer Groups. One is my Breast Cancer Group and the other is called Living with Cancer. I've met so many wonderful people. I feel I've been so very fortunate compared to so many. It is important to me to be there to support others. I live in the Upper Peninsula of Michigan. I'm thankful for these groups and for the wonderful people who lead them.
I do want to be involved in this Team on Spark People. What a blessing that SPARK has put in my life. emoticon God bless each one of you.

Nothing Is Impossible with God.
Each Day Is A New Beginning.
When You Draw Close To God, God Will Draw Close To You.

Spark People Team Leader, GLITTERGIRL, from Team, "I Can't Do This On My Own", helped me reach my goal in 2012. I was able to maintain my weight for several months, but now I have to get serious again as much of my hard work I let go of, putting my focus on another issue. I will keep on, until I get back to my goal.


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SNUZSUZ's Photo SNUZSUZ Posts: 14,834
2/6/12 4:14 P

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Wow! You have an amazing story! I am so sorry you have and are still going through so much! I was going to post how I just had my first radiation treatment and my first chemo last Wednesday, and everything went well. I have only vomited a little bit the second day after the chemo, and the radiation doesn't seem to have any effect on me yet. I am truly blessed! Especially after reading your story! I know it's only going to get worse before it gets better, but I do have a 40-50% chance of survival. Good luck to you, Dan, and may God bless!

Sue (snoozy suzy)
PST. Carmichael, California
glassslipper.info


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DAN2851 SparkPoints: (8,797)
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5/2/11 3:39 P

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Hello everyone. I am in the middle of my SECOND battle with cancer. My first exposure was just over 6 years ago when during a regular annual physical the nurse (While Taking my Blood Pressure) found a discoloration on the back of my arm that looked like a birthmark. She asked how long it had been there and I told her I thought it was a birthmark and it had been there naturally from birth. In reality, I had no idea it was there and was just guessing.

My physician came in and was also concerned and convinced me to let her surgically take a biopsy right there in the office. I reluctantly agreed. Thank God I did because 48 hours later they had me at a Dermatologist/Oncologist's office for further review. She (I have an affinity to female doctors) did in office surgery on the original site as the lab reports showed that all of the melanoma had not been removed. She - upon a full body inspection - found a second melanoma under my chin that I had not even noticed. She removed that as well. The fact that there were two separate sites immediately placed me in stage 4.

Luckily, lab analysis of both sites indicated that the melanomas were "in situ" (spelling?) and did not require an chemotherapy despite the stage four diagnosis. The following years were a living hell for me as I hid from the sun - sold my Harley Davidson - and even only went to get the mail after sunset. Thankfully, all follow up inspections resulted in a clean bill of health and after 5 years they declared me cured.

Now, for my second fight. I began passing blood in my urine and and for 14 months the specialists and all tests found no logical reason. I even had one doctor tell me that it appeared I was one of those people that just passed small amounts of blood in the urine and that I should not worry about it.

Soon, however, two years ago I began to intermittently pass PURE blood. They finally admitted me to the hospital for tests and after two arduous days they diagnosed me with stage 3 Transitional Cell Carcinoma. My left kidney was surgically removed as it was totally consumed by the cancer and my left ureter was removed as a cautionary measure as was a cuff of my bladder. I was on the operating table for over 7 hours and the incision was from my upper chest to the pubic area. It looks like I have been bitten in half by a shark.

I was told I could not take chemo therapy because - on top of everything else - they found I had stage three kidney disease in the remaining kidney. They placed me on a three month cycle where my surgeon/oncologist 'scoped' me every 12 weeks. By scoping I am talking about them inserting a camera on a cable to inspect the bladder and the urinary tract (what was left LOL). The tube, by the way was inserted in a manner that no male desires if you catch my drift.

Six months after the initial surgery the quarterly scoping found another cancerous tumor in the bladder. It was removed 8 days later.

I have now been 'clean' for right on 18 months and I am confident but still sitting on pins and needles.

I used Spark People some time ago as a weight management tool and loved it. I found it an easy way to watch my diet and assist my health.

NOW I am back yet again but with a different need this time. I am now a Diabetic. I now have severe cholesterol problems. I now have kidney disease. Each of these issues carries with it certain dietary needs. Trying to balance the needs of the three differing dietary needs seemed impossible. My physician gave me certain targets for calories (yes I also must lose right around 35 pounds), fat, protein, and carbohydrates.

I fully understand that my situation is complex and any hope of finding someone with the same set of problems is slim to none. I am, however, looking for anyone addressing dietary needs from several often conflicting direction and anyone that has or has had Transitional Cell Carcinoma.

Thanks to all, and have a pleasant day

Dan

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RAINBOWSEND11's Photo RAINBOWSEND11 SparkPoints: (0)
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4/25/11 5:35 P

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May 2010 I was having a lot of pain and went to the emergency room. After I went back 3 times in one week, they found a hernia and cancer. They fixed the hernia and removed a softball tumor from my ovaries. They then found out that my colon was fused to my ovaries. They didn't know if they removed my ovary or not but we found out later that they did not. In June I got an aweful infection in my wound that had not healed yet. They rushed me to Loyola and I had an infection surgery. The doctor said he could have put his head in my stomach wound. It was that big. So when I got out of the hospital I had to go into a nursing home for 5 months to help heal and take care of my wound. In August they performed a skin graft and I finally got to go home.
Back to my cancer doctor who sent me to a cancer specialist because of my getting the infection they were afraid that there were no options for me. The specialist, after a lot of deliberation told me I had one chance, another operation. She said it was very tricky but advised. So another surgery in Feb. of this year. It took over 10 hours. A plastic surgeon had to remove the fat across my stomach so they could see where the cancer was. Then the cancer surgeon went in and took out my ovaries, uterus, tubes, etc. I had 2 seperate cancers, ovarian and uterine. The ovarian was very advanced but the uterine was in the early stages. I was lucky because I am here. Now chemo starts. I had my first in April and will be going for my second in May.
I know that is a long story but it is mine. I hope all of you are doing well and we will survive.
All we can do is go forward and pray that the cancer cells are all dead with the cancer.

Don't be an if only...be an I did it!
co-leader of 55+females www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=9682

also: co leader of
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9/20/10 1:41 A

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I was diagnosed with Melanoma in September 2008. I went to the doctor for some shoulder pain and come out with a cancer diagnosis. Not what I expected, AT ALL. It's stage 4, the worst stage, just my luck. My melanoma is not on the outside of my body, it's internal. Right outside of my left lung is where the largest tumor is located. I have some smaller tumors located lower in my abdomen and one in my left breast. Ugh that one hurts like a witch!! Just washing myself in the shower with a loofah hurts...anyways I'm going to start rambling...lol. I've done experimental drugs, chemotherapy, radiation & IL-2. The IL-2 was supposed to be "the one" that would pretty much shrink my tumors to nothing. Ya not so much. I did 2 rounds of it and each time I had to be in the hospital for 1 week. It was hell on earth. I couldn't eat, I couldn't stop throwing up, I couldn't stop pooping, I felt like I had been hit by a bus, I would shake uncontrollably because I was so cold then I would be burning up, my skin was so dry and it was peeling off my body SO badly, my feet & legs swelled up like sausages. It was horrible. Then when we were finally able to see if it worked, we found out it didn't :( It shrunk the tumors a little bit but not as much as my doctor was hoping. It was such a letdown, especially after how horrible of an experience it was. I'll never do it again. If it had worked I'd have done 1000 rounds of it if it had meant I'd go into remission. We finally found a drug that is working! It's a Phase 1 Trial drug, no name, just letters & numbers. It's working. I just completed Cycle 8. My doctor just told me last week that the total shrinkage is 35-40% and that I am in confirmed PARTIAL REMISSION!!!!! I am SOOO happy =) So as long as this keeps working this is what I'll be taking.

What Cancer Cannot Do
It cannot cripple Love
It cannot shatter Hope
It cannot corrode Faith
It cannot destroy Peace
It cannot kill Friendship It cannot suppress Memories
It cannot silence Courage It cannot invade the Soul It cannot steal Eternal Life
It cannot conquer the Spirit.
-Author Unknown


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JUDITH19711's Photo JUDITH19711 Posts: 137
7/16/10 1:17 A

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First, I had uterine cancer. I was treated with radiation.

Then three years later, I was diagnosed with breast cancer. I had a lumpectomy and received radiation and chemo and left on a pill to prevent the recurrence of the cancer.

Then three years later, I was diagnosed with metastatic breast cancer to the bone - stage 4. C-7 vertebrae I was treated with radiation and chemo and left on a pill to prevent the recurrence of cancer.

Now, three years later, I am again diagnosed with a recurrence of cancer back into that C-7 vertebrae.Before the surgeon went on vacation, it was decided the C-7 vertebrae would be removed and a spinal fusion would be completed.

However, with further testing, it has been just discovered that the next vertebrae , the T-1 vertebrae, has multiple cancer lesions. The cancer surgeon does not know it yet. So I guess that means 2 vertebrae will be removed and replaced with cadaver bone and then the fusion will be done.

I trust in the Lord, I trust in the skill of the surgeons.The doc comes back from vacation next week and I have an appointment with him the 22 nd. It is a 2 day surgery. Surgery one day - to the ICU on the ventilator the next to rest - back to surgery the third day to complete the surgery. They are going to have to saw off some bone in the front to get a good OR site. The surgery will take place at UNC Chapel Hill - a big trauma hospital. I won't be the first one to be done there.



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RACHELESS's Photo RACHELESS Posts: 40
9/9/09 2:45 A

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Cancer does not exactly run in my family, but we have enough for me to know what the symptoms are....I didn't have ANY.

I had an ovarian cyst removed in May 2008 that went from a simple laparoscopy to the equivalent of a c-section to remove adhesions, which then led to a staph infection that kept me exhausted for a whole year! As a formerly exceptionally healthy person, this was very annoying: I couldn't wait to get my strength back.

Just as I was healed enough to resume activities, I had a kidney infection that I sought treatment for. My PCP was certain it was staph again; I was certain he was wrong, but I agreed to an MRI. I was RIGHT, but he saw just the tip of a shadow on my left lung that wasn't there in 2006. I was busy with my sister's wedding for 4/19/09, but did two more scans and a lung biopsy at the beginning of April. I was so sure I didn't have cancer, I didn't even need medication for the biopsy: the doctor was very freaked out & said it was the first time he ever did that procedure on a wide-awake person! The results was negative for all but reactive/tcells. 6 different doctors told me I didn't have cancer; the 7th, a thoracic surgeon told me outright that I had cancer; I didn't believe him! I agreed to have the 'spot' removed for diagnosis via VATS & resection on 4/28/09. Short story:it was a very rare lung cancer: Bronchioalveolar Carcinoma. No family history at all: no known causes, no symptoms, except an intermittent cough. I didn't have time to be shocked: I was moving into my dream apartment & immediately scheduled for a lobectomy on the right side, which was the most miserable thing I can describe: nerve pain not withstanding, I developed hypersensitivity which amplified my pain (funny: who would have guessed that opening the refrigerator & getting the goose bumps was the most painful thing that could happen to you!)

I healed exceptionally well: Back to work one month late, initially through a haze of pain, but 2 months later, I am almost pain free. I have resumed normal activities, though I avoid too much 'arm lifting' or anything that requires twisting of my torso: I get tender sometimes since everything is still healing, but I think this will pass quickly. (hope so: those nerve 'zings' throughout my chest can be a real nuisance!)

There was no need for radiation and there is no chemo option for me: BAC is so rare, they only have a few drugs & I am not a candidate for any. Now comes the endless CT scans, hoping for nothing peeking! My first scan showed a new opacity which could be recurrence, or a scar from surgery, or who knows what. All I can do is wait 2 months and do it again....and again.....and again!

Two oncologists told me there is no way to predict my chances: though I am Stage IV by the old staging methods (I had four distinct tumors, although no metasteses), BAC doesn't follow those rules and I decided to just live my life. As a God-fearing woman, I think it insults God to fret over this, as though it caught Him off guard.

I CHOOSE LIFE!

Edited by: RACHELESS at: 9/9/2009 (02:53)
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CATCHRISTA50's Photo CATCHRISTA50 Posts: 2,272
8/17/09 5:34 P

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It is hard for me to write this when I see so many who are struggling with this terrible disease. My story goes back to Nov. 12, 1966. I was 14 years old. My parents were away on a trip to Seattle for my brother's wedding. (We lived in Texas.) My sister who was 16 and I were goofing around in the kitchen, doing dishes and doing what most teens did, we had the music up and were dancing around and bumping into each other with our butts. Just having a lot of fun. I was at the sink when my sister gave me a little butt bump. I slightly hit the cabinet on my right side and went into extreme pain and feel on the floor holding my right side were your appendix is at. At the same time that happened, for some reason my mother called. My sister told mother what happened and she told her and my brother to take me into the doctors right away. So off we went. They pushed on my side, did blood work and found nothing. Sent me home. We made this same trip into the doctors about 4 more times before mother and dad returned home. Mother is an RN and worked at our local hospital. I lived in a town of about 1600. Very small hospital. On Thanksgiving Day, my mother was at work and called and asked my dad if I had eaten anything for dinner, and he said not much. Mother had thought things over and decided that instead of waiting until Christmas holidays to have my appendix removed, I would only miss 1 day of school if they took them out the next day. So off to the hospital I went. One of the reasons my mother was getting so concerned was because I had lost so much weight. The next day when they opened me up to remove my appendix they found the cancer. Of course they didn't tell me. Tuesday when I was to return to school, I was back in the hospital for exploratory surgery. They found pea size black balls of cancer all over my small intestines, on one ovary, and the bottom of my stomach. The biggest mass was on my appendix. They removed all they could. After the surgery, the doctor told my parents that I had less then 3 weeks to live. There was a nun there called Sister Diane that sent my results to several doctors in Dallas. The problem, I was too old for the children's hospital and too young for the other. What to do. A doctor called my parents for Maxfield Clinic (for adults) and said he felt he could help, how soon could they get me there. We left for Dallas that very day. Dec. 6,1966. (My sister in law, passed away from this very type of cancer Dec. 6, 2008. I start crying each time I think about it, I loved her very very much. No one has ever given us a name for this type of cancer.) The only treatment at that time was Cobalt treatments. I did this for two weeks. I was sent home Dec. 20, 1966 cancer free, and have been for 43 years come this Thanksgiving Day. God bless Dr. J. R. Maxfield and may he rest in peace.

A snowflake by itself is a very fragile thing, but look what happens when they stick together.

FAITH is more CAUGHT than TAUGHT.

. ;.•.♥ ¸.•´¸.•*
¸.*Christa• ♥.•
♥ .•*¨-:¦:♥-. ;.•.



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CALIBARB's Photo CALIBARB Posts: 39
8/2/09 7:44 P

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Hi. I had a car accident in 2005 that resulted in a CT scan because I was having so much pain in my right side. The Dr said I needed to see my physician for more results. Was told I had kidney cancer and had a nephrectomy 10 days later. In Jan 09 I was told the cancer is spreading so they prescribed Sutent. I take it for 4 weeks then 2 weeks off. The first monthe went ok, but it gets worse every month. The end of May we went on an Alaskan cruise and I asked the dr on my last appointment if I could postpone taking it a week longer so I didn't have to take it on the cruise. He said that should ok. The side effects were so severe, I'm now taking care of a perirectal abscess. I think I didn't take care of the diarrhea well enough.
I was just told I'm now in stage 4 (of 4). Didn't cry this time, but it sure is hard.
Hope all is OK with all of you.

TKJBSGETTINGFIT's Photo TKJBSGETTINGFIT Posts: 321
6/21/09 5:49 P

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Hi! Nov 2007 I agreed to a hysterectomy to deal with severe anemia that wasn't improved much by meds over a 2 yr period. Gyn surgeon (head of dept!)had no openings until late Feb 2008 but agreed to do surgery on his day off so our insurance would pick up more of the costs (2008 it changed to cover less).

During preop testing was diagnosed with diabetes. Stress test impressed doctors that overweight person can be in great cardiac shape but cardiac radiologist insisted overweight persons needed cardiac cathetization so had that done to prove in good shape, ARGGG!

With no change in routine/eating habits, lost 20# 1st week in Dec., 35# by time of 1st surgery. Surgery Dec 13th went very well but took nearly 4 times what was expected, uterus was extremely large, surprising surgeon since preop ultrasound had been done 2 weeks earlier showing normal size.

My surgeon phoned Christmas night 2007 to tell me I had uterine leiomyosarcoma. This cancer forms in the muscular wall of the uterus unlike common endometrial cancer of the lining of the uterus. The surgeon actually sat with the information, in shock himself, for a week. He was worried about the cancer spreading but wanted us to have a nice Christmas. We had a fantastic Christmas with extended relatives out of state and returned Christmas night after a week and a half of being cared for (after the first surgery) by my parents at their home. I healed quickly.

My first surgeon had started training as a gynecological oncologist but after his mom died from gynecological cancer first taken out at stage 1, he emotionally couldn't continue his training and reverted back to normal gyn/obs surgeries. Anyway, he didn't feel qualified to do further oncological surgery and helped us set it up at another facility 2 hrs away in the same HMO. No one there or in my HMO specializes in my kind of cancer.

Appts and testing between surgeries resulted in diagnoses of: glaucoma, GERD causing day reflux into sinuses (infections), probable M.S. Had no energy for regular workouts and not good at sitting around!

Took 2 1/2 mo to get surgery for bilateral salpingo-oopherectomy. Full staging wasn't completed as my new surgeon had emergency arise during my surgery, to save teen, and didn't take time to remove lymph gland for testing, like original surgeon said needed to be done(-thus the reason for transferring to facility where testing is done in surgery room!)

Anesthesiology medication regime from 1st surgery wasn't followed for 2nd surgery as prearranged, to allow med student to experiment with various anesthesiology meds! This resulted in major difficulties keeping me breathing during and after surgery(have asthma), and left me so medicated and in such hyper state I could not refrain from constant movement for 3 weeks, not even to eat, sleep, shop...unbelievable! My body bruised from neck to toes from constant bending, reaching, moving. Yes, stitches came out too, which may have contributed to an infection inside my entire abdomen lasting 4 months! I had nightmares for months feeling like I was still being restrained after surgery, unable to breathe, needing to move around and clastrophobic with any bedding on me. After the meds wore off I ate alot of comfort foods and gained more back than I had lost.
emoticon

I have had five pelvic exams @4-mo intervals showing nothing. I continue to have drainage from unknown source that was there prior to first surgery. Was told at yr anniv. appt that it was probably just remnants from first surgery leaking through the skin (huh?) but it would be a good idea to lose weight as fast as possible anyway, as fat releases estrogen and estrogen feeds fat. 4 mo later was told it was probably from surgical adhesions (but it was there PRIOR to surgeries!)We felt great when told this until we realized it couldn't be! We were also told there was an 85% survival rate (true for common kind of uterine cancer, not mine.)

Thanks to the internet making info available to patients as well as MD's, have learned from multiple sources there is a 5-yr survival rate of 51% for stage I, 13% for stage II. Mine was labeled as stage IB without knowing if it was in the lymph nodes (which would be stage II) or why I continue to have the discharge of unknown origin.

Since then I joined an online group with physicians, patients and family of patients with this kind of cancer, The leiomyosarcoma Online Support Group @

l-m-sarcoma@listserv.acor.org .

I have learned my cancer is extremely rare and acts differently than many cancers, thus the lack of knowledge by both surgeons about it. The imaging and lab tests I should have had to monitor it have never been done, much less every 3 months. I have only had vaginal exams that I now know would not be expected to show much.

"Uterine sarcomas can grow locally to involve the tissue surrounding the uterus and cervix, to the rectum and bladder, to the groin, pelvic and aortic lymph nodes, to the surfaces of the abdominal cavity and distantly to the liver, lung, and brain.

Leiomyosarcomas spread by direct local extension, abdominal implantation or via the bloodstream. The lung is the most common site of metastases, followed by the liver, brain and bone."

Considering the unexplained spots found in my original preop imaging that my PCP was also concerned about but couldn't do anything because it was the HMO's radiologist that declared it was nothing to worry about, we are concerned. We are with a new HMO but I have to wait until Aug to get in to a PCP that is supposed to be very good. Until then all appts cease, even my glaucoma exams, because everything has to be approved by the PCP.

God works in mysterious ways and one of them was giving me the caring surgeon of my first surgery. Wish he had completed his oncology training, though, LOL. Every Christmas we will thank God for the surgeon who went out of his way to get my surgery in early and who helped us through the cancer experience. Both hubby and I already miss him since switching insurance and HMO's. It wasn't unusual for him to hug a patient after not seeing them for a long time or after stressful news. Wish he could be cloned!
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Edited by: TKJBSGETTINGFIT at: 6/21/2009 (19:50)
Fill your minds with those things that are good, deserving of praise, that are true, noble, right, pure, lovely, and honorable.Put into practice what you have learned and received from Me, both from My words and actions. Phil 4:8-9
GIORNONOTTE's Photo GIORNONOTTE Posts: 11
6/9/09 11:34 P

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hi, i'm 34 years old. when i was 10 i was diagnosed with ALL (acute lymphocyte leukemia) and in 2007 i was diagnosed with thyroid cancer. i'm currently undergoing treatment for Hep C which i got from a blood transfusion in my leukemia days. it i s lot like chemo. i'm really tired all the time, i have "brain fog" and the meds have dried out my eyes so i have to take restasis. so i'm not getting a lot of exercise right now but on the bright side i don't have much of an appetite either

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CIAOBELLA57's Photo CIAOBELLA57 Posts: 590
5/29/09 10:16 P

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Always been fanatical about prevention since about 90% of my relatives on my dads side have died from cancer. Dad (now 85) survived two episodes of thyroid cancer (the second reappearing after 7 years after his first first surgery in 1958 before they even had CT scans.

Ironically, I have always been a diet and fitness nut, but was still a smoker. Figured that with boyth my family history and the fact that I smoked, I insisted on getting a chest xray every year from my GP when I had my annual CBC and metabolic blood work done.

Find and Dandy until September 2006. Chest Xray showed an extremely small, and unidentifiable shadow in my upper left lobe. A CT was scheducled. Again the same results because of the small size. GP sent me to a pumonologist where I had that wonderful brething exercise and he suggested a PET scan.

That little globule glowed in the dark. A needle biopsy wasnt recommended because it was so small th they thought they might miss the actual suspected cancer cells so surgery was scheduled kind of a twofor" whre they would go in robotically remove a section of the suspected mass, and based on what the results were, either just remove the mass if it were benign, sew me hope and I would leave that same day.

The biopsy showed a maligancy, about 2 cm, type 1A
non small cell. They removed the entire left upper left lobe and surrounding lymph nodes.

Have had CT scans every 4 months since. All clear.
Had a funny feeling about the last one, picked up the results and the radiologist found unidenfiabile shadows in the right upper lung and suggested another CT scan in six weeks instead of what was suppposed to be six months.

Thought I was handling it pretty good until two weeks ago when I took my 14 year old black lab I had rescued 2 years in again for what I assumed was yet another round of spring allergies (gotta luv the eastern shore of MD for all the insects). They did a chest xray and told me shed had advanced lung cancer and less than a week to live. She waited until I woke up the next morning, left the door open for her when she wouldnt go out and 10 minutes later I found she had gone to her favorite place in the woods and had died.

Still dealing with the grief of losing her so suddenly and with it came the thought that her death was a premonition.

The next day I discovered my elderly uncle was diagnosed with leukemia. Still reeling from that, I get a call from a guy I had had a serious relationship with about 10 years ago (we still remained friends when things didnt work out) and his is in the hospital and his 48 year old wife was having surgery for breast cancer. He was clearly in shock; and I couldnt get too much cohesion out of him, was this a biopsy or surgery, he was just freaking out and I was the one peson he wanted to talk to.

And thats where I am now. My CT is scheduled for mid June, my husbands PSA came back from his annual blood test and he is scheduled for a needle biopsy i a week after my CT.

Just blocking it all out for now and trying not let my mind go into panic mode on how I will deal with the results of both my CT and his biopsy.

Mom was taught to always "hope for the best, but prepare for worst" , but I just cant do that becuse the worst case scenarios are just too much to handle.

havent been to the gym all week; am fostering, adopting a 2 year old german shephard, wolf hybrid who they were going to euthanise because she was deemed "fear aggressive" and they didnt think she could ever be socialized after the both the physical and emotonal abuse she went thru.

I need her as much, if not more, than she needs me right now. After two days, she as already become so attached tome that she literally follows me from room to room, and is one of those dogs, who once they give you their trust and heart, it is yours forever.

She will require a lot of work socializing her with people and my two beagles and three cats, but already comes, sits and stay at my command.

I desperately need her to come thru those hellish two years, and she senses my need for her as well.

Right now, she is curled up beneith my feet under the compuer desk, happily content just to be near.

For now, its just waiting for June to be over and know at least what to expect.

I'm small, skinny, 51 but I have enough of my Dad in me to believe I will survive Cancer, even if it does come back, because I will never be a victim, only a survivor.

Wolfie girl looks like maybe she needs to venture out one last time before bedtime.

She is totally perplexed with the two small bagles and three cats and cant figure out if they are just large toys or extremely strange shephards.

Edited by: CIAOBELLA57 at: 5/29/2009 (22:34)
ISUNIQUE Posts: 27
5/29/09 7:40 A

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My history is this:
1992 gallbladder attack, gallbladder surgery. Path report, cancer. Another surgery, targeting clips just in case. No other treatment needed. Monitored like forever.
Fast forward...
2008, Feb 2 Knit Michigan, knit for a cure, raise cash for cancer and make chemo caps.
Took Feb 4th off to take Mom home after event. Mom cancelled out, go to the docs instead, need to get a RX renewed anyway. Doc is old fashioned, chest x-rays on smokers, and I hadn't had one in about a year. Plus, it was time for my yearly blood work (leftover testing from the Gallbladder cancer). Okay, that done, get back about my business of the normal day to day life.
Doc called, there was a spot on the X-ray, wants me to get a Cat scan with contrast. Okay, set it up go the next week. Not good, pretty good chance it's cancer. Okay, next step is.... Go to see a pulmonary doc, breathing function test, Pet scan, and a FNA, what fun I'm having. Breathing test, not fun if you are a smoker, but deal able. Pet scan, not bad got to get some sleep in while waiting to glow. FNA, what a mess. I had a partial lung collapse (5%), pain, and the embarrassment of being transported around the hospital with my butt greeting all has we went.

Okay, done, back at work in a couple of days.

Go back to pulmonary doc, not good. They believe that the cancer they found in my lung is a secondary cancer. They think there is more in my abdomen somewhere because of the way the cells look. Okay, time for a second opinion. Go to the oncologist I went to for the gallbladder cancer. He is a good doc, lousy bedside manner, but will tell me like it is and not what I want to hear, but what I need to hear. He says just lung cancer, plain and simple, easy for him to say. Still, I am concerned about the other finding, let's make sure before I go any further. Third opinion, big university hospital, major cancer and thoracic center. See two docs, first one wanted me to have a repeat of all the tests I just had. The thoracic surgeon said BS, this is the only test you will need. So a week later I am having a colonoscopy and it comes back clean.
Okay, surgery is scheduled, need to use the spirometer and walk 3 miles per day.

April 8th, removed my upper left lobe and numerous lymph nodes. Staged at 1B, T2 N0 M0. See another oncologist there. Well, it appears that I am straddling the fence in treatment options. I have a 50/50 chance. If I decide to go with Chemo it would increase my chances by 5%, maybe that is if it worked and a rogue cell didn't wander off. Okay, send out an e-mail to family and friends, heck even a few folks I wasn't crazy about. Bottom line, they will support me in whatever I decide to go with.

Well, I decide to opt out of the chemo. Try to keep my healthy cells healthy for as long has I can. After reading quite a few posts on the subject, it still looks like I could have gone either way. Well, that is my story so far. Other than losing my job shortly after returning to work I was let go.

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STEVENH512's Photo STEVENH512 Posts: 2
5/27/09 1:10 A

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I'm 32 years old and was diagnosed with testicular cancer in June of 2006. It started out as pain, woke up one day feeling like I got kicked where no man ever wants to be kicked.. lol.. the pain led to swelling that wouldn't go away, so I ended up seeing a doctor who misdiagnosed me. I was told it was "epididimitus" (a type of infection or irritation), prescribed antibiotics and sent on my way. Several weeks later when I ran out of antibiotics and the pain and swelling hadn't gone away I saw another doctor who sent me for an immediate ultrasound and then informed me that there was a "solid mass" that would need to be removed right away. Went in for surgery and CT scans the next week and found out it was "embryonal carcinoma", a common but aggressive form of testicular cancer.

The first few CT scans came up clear, but there were still tumor markers showing in my bloodwork so I kept going back in for more CT scans until finally they found something around mid-October. Somehow this "invisible" cancer had spread through my lymph nodes all the way into my left lung and left shoulder before the CT scans were able to detect it, so I was all set to start chemo immediately and mentally preparing myself for the possibility of another major surgery.

Thankfully, it only took 9 weeks of chemo and no further surgeries to get rid of the cancer. I've been cancer free since November 2006 and trying to live a more healthy life now that I feel like I've been given a second chance.

Through it all, I looked to the story of Lance Armstrong for inspiration. This is a man who had far more advanced cancer than I did, but he kept a positive attitude and not only was he cured.. he went on to win the Tour De France 6 or 7 more times and even ran a marathon. While I'll probably never win the Tour De France or run a marathon myself (let's face it, we weren't all cut out to be world-class athletes) I did try to follow his example. I kept a positive attitude and didn't let things get me down too much and I'm happy to say I made it through.

Still have some lingering side-effects from the chemo, mostly neuropathy that makes it difficult for me to do some of the things I used to do (it's hard to play guitar when you can't feel the strings and your hands don't want to respond how they used to.. lol), but I've learned to deal with that and the occasional ringing in my ears. I'm alive and healthy, that's what counts.

DAVE2503's Photo DAVE2503 Posts: 16
5/14/09 6:14 A

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I am 54yrs old, and was diagnosed with Prostate cancer in February 2009. The cancer is locally advanced and so prostatectomy is not an option. I am undergoing Casodex Hormone therapy at this time, and soon, I will be receiving radiotherapy. I find the task of updating relatives and friends rather tedious.
I had never had any symptoms whatsoever. It was only a chance remark last November to my GP that led him to examined me and informed me my prostate felt enlarged he took a PSA blood test and he arranged for me to see a prostate cancer specialist. January 2009 was my first consultation, another finger up my rear end and the same diagnosis as before. An appointment was arranged for a biopsy and ultrasound examination.

More action up my rear end. Ultrasound indicated four shadows. I could see them with some contortion. It took some doing. I was interested. The first biopsy was a bit of a shock and by the eighth I was most certainly sweating. Not a very pleasant experience but bearable.

My results were back by the end of February 2009. A breeze, I thought. This is only something that happens to other people. I really thought I would go in and come out with a prescription. Not to be. Seven out of the eight biopsies were malignant. I had prostate Cancer, Gleason score of 7. It was moderately aggressive.
I was told an appointment would be arranged for an MRI and Bone scans to see whether the cancer was contained within my prostate. I am still waiting for both the MRI and Bone Scan; the reason given is I’m too large, 54” waist and 348lbs, (Three months later I am now 50” waist and 294lbs.)

So what were my options? Well, I have been told the best way to go is for me to have radio therapy, but they are advising a wait and see policy as the Casodex Hormone treatment has stopped the cancer being able to spread, and as I am losing weight, my options for treatment will continue to increase.

This I have agreed with my consultant as my best choice bearing in mind my other health problems.
I really think the word 'cancer' doesn’t mean that much to me, I just know that I have this thing that needs to be gone, my one percent. I have sought advice from all over the place.....the internet, friends, people listed on information from the hospital. I have found all this very useful.

emoticon emoticon

Edited by: DAVE2503 at: 5/27/2009 (06:32)
Phil 4 v12 & 13; I know both how to be abased and I know how to abound. In everything and in all things I am initiated both to be full and to be hungry, both to abound and to suffer privation. I have strength for all things in him that gives me power.

________________


Bless my bathroom scales Lord each week as I step on.
Help me lose a stone or two and not put any on.
Help me enjoy my salad, and foods to make me slim.
Keep me on the "Low Fat" track, so one day


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WONDERNURSE247's Photo WONDERNURSE247 Posts: 11
4/28/09 3:33 P

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During my pregnancy in 2004-2005 I keep having these super weird symptoms that were attributed to the pregnancy. One was that I itched like crazy. I know now that is a B symptom of lymphoma. When the baby was six weeks old, while breasfeeding, I noticed that my left arm was hurting and just brushed it off. That night the pain was so bad that it woke me up. The next morning I noticed a lump just under my left collar bone. So I was hospitalized for 3 days with what they thought was a cyst that was infected. But after having it drained surgically, I got no better. In fact, within the week, the lump has gotten dramatically bigger. So after a needle biopsy, the whole mass was removed. It was wrapped around my subclavian vein which is why my arm was turning blue. 10 days later I was told that I had Hodgkins. Long story short, 6 months of chemo and 30 something sessions of radiation and a spleenectomy I am now cured. I hope I can be of some help to anyone who needs it. Cancer is a scary diagnosis regardless but to get it when you have a six week old baby it was devastating.

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SCOTTIEGIRL57's Photo SCOTTIEGIRL57 Posts: 1,286
4/13/09 10:24 P

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It was in October of 08. I'd been suffering from discharge nastiness for over a year that'd been chalked up to Menopause by my doctor. Well, My husband said to go get a cat scan or else! So finally I talked my doctor into a scan - low and behold there was a cyst on my remaining ovary. They went in, took it out and found out the darn thing was cancerous.

I had my staging operation on November 13th 08 at Kaiser in San Francisco. I started chemo shortly afterwards and have never looked back. I just had my 5th chemo and I'm still kickin. My doc says there's no signs of the stuff in my system now. My CA125 been down to a 5 or below since January. The changes I made:
I stopped smoking, cut way, back to minimal alcohol, no coffee, no artificial sweeteners, 8 glass water a day, walking each day, lost 20 pounds, it's going to be 6 mo. in May.
I'll be starting working with alternative health professionals when my chemo is done to be able to build back up my immune system to where it was before the chemo. God blessed me with a strong body - I am so thankful for this!

The unknown monster under the bed is always scarier than the dust bunny reality.

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3/8/09 9:52 A

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I just joined this team yesterday. A few days before
Christmas of 2008 I noticed a large lump on my right
arm near the wrist. Living in Arizona I thought it
might be a spider bite. I made an appointment with my Naturapathic Doctor and she said it was not a bite. She referred me to another doctor who took the biopsy. The next week he told me I had Merkel Cancer which he knew nothing about but was willing to treat it. The first thing I did was pray to THE LORD and told HIM I was going to fight this with HIM, not fight with THE LORD but fight the cancer with HIM as I could not do it on my own. The second thing I did was cry. The third thing I did was call the Cancer Treatment Centers of America and found out that they opened a brand new center in Goodyear,
Az. My Naturopathic Doctor said she heard good things about them. I went for a lot of tests there and this past Tuesday the surgeon took out the bump (Merkel Cancer) and the lymphnode it was coming from.
I go back today to stay overnight and find out early tomorrow from the surgeon if they got it all or if the cancer has spread. My attitude right now is that they got all the cancer. I have a lot of PRAYER
SUPPORT. THE LORD IS GOOD! I will also find out tomorrow if I have to have radiation. Merkel Cancer is a rare aggressive form of skin cancer. However, three of the doctors I saw at the Cancer Treatment Center said they have seen and worked with Merkel Cancer and all the patients they are seen are still living and cancer free. That is a lot better than what the internet said. I know it was THE LORD who brought me to Cancer Treatment Centers of American and I know THE LORD is getting me through this.
GOD BLESS!
Louise

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10/11/08 5:36 P

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KIPPY_63
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“Just a cup.” I thought of this while driving in my car just the other day. As the thought dawned on me, my eyes opened wider by the second as the realization set in. “Just a cup” I repeated out loud to myself. “All I ever really needed was just a cup for all the important stuff. But I hauled around a bucket. Why?” The tears ran and the realization sank in deeper still. I started the excuses: I guess maybe I felt like someone important. “Look at me everyone, I have a bucket! A big, beautiful half full bucket! It’s mine…All mine!” Or was it that I felt I had to haul around a bucket? I thought everyone else was so I should too. I didn’t consider myself to be productive to the human race if I didn't carry a big bucket. Having just a cup would have meant mediocrity or worse…Middle Class. Or was it that I just didn't know what was really important in life? I thought I did. I thought I had my head on straight. I started listing out the “have’s” and the “have not’s” in my life: I had a job I loved; three well behaved, highly intelligent children; a wonderful husband; a $100,000 mortgage; two nice vehicles and a dog. I had it all. Very little of that list belonged in the cup. They belonged to the bucket. It was time. I was in need of watching my own bobber and taking a personal inventory. Nothing can center a being like a brush with death, or worse, the realization that life is truly short and the time we are given to be here shouldn’t be wasted on unimportant things. A health crisis was in tall order. Reality needed to check in, and disillusionment needed to check out: “One health crisis coming right up”. A big platter of crisis was set before me. I was so self absorbed, I still didn’t realize how much my life was about to change. No, nothing could have ever prepared me for this.

Five years ago I was diagnosed with stage IIIB Nodular Melanoma: The big "C", cancer. Nodular Melanoma: the most dangerous type of skin cancer known to man. I wasn't too concerned with any of it until I looked over at my husband and saw the tears streaming down his face outside the operating room doors as I was waiting for laser surgery to remove a mole on my eyelid. The surgeon had just given us the news of the biopsy results from the week before when he removed a mole that had been bothering me from my right forearm. I thought “It’s skin cancer for heavens sake. How bad could it be?” Then I turned to him and said “Well, thank God it isn’t Squamous Cell…my Dad died from Squamous Cell last year. Nasty stuff.” He shook his head and gave me funny look. Then I think I cried because I felt I should because my husband cried. Fear was not in my vocabulary when it came to speaking of cancer. IT WAS SKIN CANCER! No big deal, right? Right? Oh, this couldn’t be good. Deafening silence is never a good answer to a heavy question. I was more concerned with how the hell was I going to deal with this and work? As I lay there waiting to be wheeled in for surgery, I made a mental list of all the things I would need to do. I needed to call my family doctor who would need this information. I had a few questions to ask, one of which was “Could this kill me?” My husband was in need of some reassurance. I was alright…but he was crumbling before my very eyes. This man who has never missed a beat was turning into a puddle of goo and starting to scare me. Dr. Remucal, the surgeon who broke the news, would only state we would “learn more the next day” when we went to speak with another surgeon in the Twin Cities Seventy-five miles away. An appointment he set up himself to waste no time. That was his response to all my questions. He could no longer perform anymore surgery at the local hospital because of the location of the tumor… “Too many nerves involved” he said as he grabbed my hand and gave it a quick squeeze and left for the operating room. I wondered if one of those nerves might be his. I knew him on a personal basis. Was he too close to the fire? I pushed the thought back and let denial have it way with me. It was a tiny mole, I’m a big girl. I think in this case, the big girl wins.

Upon leaving the hospital that day, I realized the one mole to be removed on my eyelid turned into over seventy-five on my face, neck and shoulders. Dr. Remucal made sure no leaf (or mole) was left untouched. I looked like I had been shot in the face with bird shot. Each little red dot was where a mole had once resided. My back was sore so we headed directly for the Chiropractors office in a neighboring town 20 miles away. Once there we had a spare fifteen minutes so I called the family doctor on my husband’s cell phone. I told the front desk what the diagnosis was and asked he call me back. Upon hanging up the phone I said to Dean “He’ll call back sometime later this afternoon. He always does. Don’t worry, Dean… Dr. Murphy will have some guidance for us.” And at that precise moment the cell phone rang in my hand. I answered “Hello?” “Dr. Murphy here, you called?” Okay, I thought, that’s weird. He called no less than ten minutes after I placed the call to him. I stomped down the red flags waving before my face and ignored them, helping denial up off the floor and holding it tight. “Dr. Murphy, Dr. Remucal removed that mole on my right forearm last week and today he told us the biopsy results showed stage IIIB Nodular Melanoma. How serious is this?” “Well,” he replied, “You need to take care of this right away. Everything else in your life needs to wait.” Denial tripped and fell and I helped it off the floor again holding it closer still. “Okay,” I stammered, “Could this kill me? How serious is this?” “Serious. Yes, Karen, it could kill you.” Denial disappeared, obliterated by truth. Mortality was looking me squarely in the face, and it had blue eyes, just like Dr. Murphy. I felt sweat start to run down my back and neck. I don’t remember much of the conversation after that. After I hung up, I turned to Dean and started to cry…for real this time. I was, in that single moment, facing my own death. I couldn’t breathe or think. I could only cry and gasp for air that didn’t seem to come.
In the days and weeks to come, I prepared myself for three months of chemo and my hair to fall out. When the first oncologist looked at me and said it was a one year treatment option that would make me sick, I looked at him in disbelief and said "Excuse me, did you just say one year?" Jesus, I was prepared for option one. I never thought there was a different option. And come to find out, option one was never an option anyway. Yep, says I, this is MY life. Why should I be surprised now? I guess I keep hoping things will turn to my favor one day and yet it feels as though it never does. But I try to keep a good sense of humor about it all. The oncologist says "But you won't lose your hair." Like that should be an upside. I really didn't care if I lost all my hair. I had to work. I had to help pay the bills. Who would do my job? In one felled swoop, my whole life changed. I was about to be vacuum packed by life.

Did you ever have the mind set of something being one way and when you find out it's another way, it just won't register because your sucking wind from the slam into your gut? Yeah. That's what that felt like. I was sucking wind. I couldn't even begin to comprehend what this would mean to me. For us. I was 39. I had three teenagers. I was about to embark into a world and onto a journey I didn't expect to begin until my sixties. I say "expect" because both of my parents had cancer by age 65. I used to tease them that they were jinxing my goal to live to be 100 because genetics said I really wouldn't make it. I wasn't too serious when I said it.

My Dad died the year before I was diagnosed. He died March 14, 2002 of throat cancer. He was a long time smoker. I was diagnosed in April of 2003. His death was a very spiritually enriching experience for me. It has been one of the greatest gifts my Dad could have ever given to any of his children. The experience of facing death, embracing it and falling safely into the arms of his maker. His struggle was brutal. If he feared, it wasn't an obvious fear. He was a believer. When I went to see him a month before he died, when we parted, I hugged and kissed him and whispered in his ear "I love you Dad, say hello to grandma when you get there." He couldn't speak because they had removed his larynx. But he said to me, "thank you." He said I would never know how much I helped by getting him in touch with Hospice. I guess he would never know how much I felt like I betrayed him by giving him over to them. By letting him go. We were fighters and survivors. I never wanted to see him quit or suffer. I only wanted him to have peace. And rather than see his final days be filled with agony and illness, at least he would have the comforts Hospice could bring. This would be one for the cup. This was important.
When I returned home from that visit, I went to the local fabric store and bought the fabric to make a Lovers Knot quilt for him to have. My family and I wrote on the back of it so he could feel us near when he slept under it. I also made it for Mom. After he was gone she would need some part of him with her and I hoped the warmth of the quilt could bring her the warmth of his heart after his departure to the Church Triumphant. I think it did. When I gave it to him, I wanted him to know how much we loved him. I hope he knew. Yes. This was one for one for the cup.

My own diagnosis one year later really threw a tailspin on us all. On May 5, 2003, I had the first of many surgeries. As of this writing, there have been a total of 19 in the last five years. The generosity of friends and family, the gift of two church families, the prayers, kindnesses and concerns of those around us. Cards and calls from total strangers. I was so busy hauling around the bucket I never saw the cup. Never knew the cup was running over with love, outreach and compassion. The bucket covered the cup. It was only a half full bucket. I never realized there was an overflowing cup.
I have to tell you, I cannot say that this has been a negative experience. I have gained so much more than I have lost. It has enabled me to put all that is really important into perspective. I thought what was important was in the bucket. Little did I know, I only needed a cup. Because when it comes right down to it, there are only a few things in life that are truly important. The rest is just weighing us down. To know it is one thing. To feel it is another. Like love.

All I really needed was just a cup.


Edited by: KIPPY_63 at: 6/13/2008 (00:08)
“When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, 'I used everything you gave me'.” ~Erma Bombeck

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Every piece of this (war) is man's bulls@#t. They call this war a cloud over the land, but they made the weather and then they stand in the rain and say 'S@#t! It's rainin'!' ~Cold Mountain

Support our troops..let's bring them home!




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10/11/08 5:15 P

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ROSEGARDEN6
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5/3/08 6:59 P


I had been pregnant and the baby naturally aborted; my body had some difficulties in transitioning from the 1st trimester into the 2d trimester stages of pregnancy - my body could not hold on to the baby. The dr said I had to have a D&C, so it was done. I had the "scraping kind" not knowing that there are actually 2 types of D&C procedures from which to choose. A "scraping kind" is where the dr goes in and manually scrapes around the uterus to clean out "whatever". The other is a "suction kind" that "vaccums" out the uterus of "whatever". (It would be later explained to me that the "scraping" version is not good - the dr can scrape in there all day long and not be too sure that the contents were totally cleaned out; think of shaving your legs and the shaving cream that is left behind as you make your strokes. In contrast, the "suction" version has dramatically improved chances of everything being completely cleaned, since the dr can measure where he/she's suctioned as he/she goes along the process. This scraping procedure will prove critical for me.

After several months, I again was pregnant - this time with twins! (All my husband had to do was look at me and I could be pregnant!) We were so thrilled! Everything was going fine and suddenly I began to have episodes where I would just suddenly collapse in the floor and be temporarily paralyzed. After a little while, I could again get up. It was very scary, especially being pregnant! This time I made the pregnancy stage transition okay and except for this unexplained collapsing/paralyzation - all was great we thought. A short time later I began to have heavy discharge and it got to the point that I could not really leave the bathroom, not to be too graphic here. I would see things pass that were large liver-like clots. We would later learn that those were portions of my internal organs. Really.

Despite all of this, our twin babies were still hanging in there! I became enemic very quickly and had no energy. We went to the dr/ER near daily and the ER kept telling us that this was normal! That I just needed to go home and rest! (I was 22 yrs old. Young yes, but knew this was anything but normal!)

About 2 weeks later I got a call from a dr that I had not contacted and knew nothing of. To be honest, I thought it could be/probably was a cold-hearted prankster who probably had overheard our phone number on one of the many trips to the ER. The man on the other end of the line explained that my OB-Gyn had asked him to call me and to do an examination on me and he needed to see me ASAP that day. (Because my dr had not even mentioned that he'd done such a thing to me, is why I really felt this was a horrible prank call.) It wasn't. This guy was for real. When my loving husband came home, I told him of the odd call. He said we should get in the car and go check out if this guy was even on the marquis at the location he gave. He was, so we decided to go see him. He was an OB-Gyn Oncology specialist. He and his dr partner met with us and said that they wanted to do independent exams on me and then we'd all meet and compare notes. They told me that the babies were good, but the situation was not. They wanted to send me for an ultrasound, but the machinery was undergoing regularly scheduled maintenance then and we'd have to return in the morning for that procedure. So we did. As I lay there on that table, the sonographer suddenly ran out of the room and in rushed about 9 other drs with her. They all gathered around and wouldn't make a single sound - they just glanced at each other. They told me that they needed to rush me back upstairs to see the dr. Once there, the dr came in to the exam room where my husband and I were waiting. He said that I had to have a D & C immediately and that they needed to not waste time and get me prepped for emergency surgery ASAP. He said that there was a chance that my babies could live, but would have to be in the neo-natal ICU because it was early for them if they made it; he couldn't guarantee anything - there was just as big a chance that we'd lose them. He continued to say that if I didn't have the surgery that none of the three of us would make it. Going further he said, "I don't want to play God in this thing, but today is Thursday. With what we're seeing we really don't think you're gonna live to see this Saturday; it is that time critical that we do this."

I'm sorry, but I got a little beligerant with this man because I had only met him the night before and just couldn't believe what I was hearing. A D&C would save my life! That sounded preposterous to me!

At that point I was emotionally drained and quite upset. I got off the exam table, proceeded to get dressed and blatently told him that he was cruel and there was no way I was going to let him or anyone else touch me with a scapel or anything else and buttoning my shirt began to walk out. He ran after me, begging me to reconsider. He told my husband and I that if I would just come back to that waiting room and let them talk to us a few minutes more - he only asked for 5 more minutes of our time, we might have a different perspective. So at my husband's urging, we did. The dr said that he could very easily understand my position and that if it was him, he would probably react the same way if not worse. But his eyes were steady and his voice was clear that this situation was real. He said that we could walk out of his office if we chose, but that he had to try to really get the urgency of the situation across, the sonogram showed that a hole bigger than the size of a Silver Dollar coin had been eaten clear through my uterine wall. He said it's been 3 minutes. I only asked you to stay for 5. I'm gonna walk out of this room and will be just outside. During the next few minutes, I urge you to discuss this and when you walk through those doors, tell me what you've decided. My husband said to me, crying, that he loved me and he loved our babies and he didn't want to lose any of us. He said that perhaps God would let our babies live, but that if not, he couldn't lose me too. He said that if it came to be, perhaps God would allow us to adopt
child(ren), but that he just couldn't lose me too. He begged me to have the surgery; he said that perhaps God would even give us other natural
child(ren); that he didnt want to take a chance that the drs were right! Physically hurting, exhausted, crying I could not ignore the deeply heart-felt plea of my husband, so I agreed and was within minutes prepped and in surgery. Most sadly, our babies did not make it.

I was told that the suction D & C went fine. I should not have the collapsing/paralyzing episodes anymore. I would stay in the hospital for 2 days for observation and then go home, that was Sunday. That night at home at 2:00am I was awakened with that same unbelievably intense pain that caused the collapsing/temporary paralyzation. I was rushed to the hospital and admitted immediately. After seemingly just about every test I ever heard of and some that I hadn't had been run on me, the dr came in and said that I could go home the next day- nothing was showing up on the reports coming in, so it should be okay.

As my husband had come that next day (it was December 3 - I said it was the worst day of my life; this is important - remember this) to take me home, a team of about 10 drs came into the room. I was in the hospital bed, my husband off to my left sitting in a chair and holding my hand. The dr said, "...we have some news. Forgive us but in our experience blunt is best. You have choriocarcinoma." I didn't know where it was, but I knew carcinoma meant cancer. My sweet husband lost all color in his face and it all seemed surreal. The dr went on to say that a lot of the test results were not in yet, but from the few that were in it looked like they had caught it in its early stages. If I would agree, I would need to take perhaps only 1 chemo agent. We were in shock. The dr then said I could not be released to go home - they needed to get the additional test results and keep monitoring me. The next day, while my husband had gone to get my aunt at the LAX airport which was several hours away - she was the only one who could immediately come; my family decided that they'd take turns coming out rather than all at once- that same team of about 10 drs came back into the room and again said they had news. I was far worse than they ever dreamed and that it was stage 4; all of the test results were in. If agreed, I would have to undergo the most rigourous course of chemos available, possibly have to have radiation, surgery and they had to act fast. My hospital roommate heard everything and she was very supportive of me. A few hours later, my husband and aunt arrive in the room and I can't even speak. My roommate has to deliver the news. At this point, I literally have a true "blank" spot in my memory; I don't remember a thing until sometime the next day.

The long and the short of things is that I would end up taking the 3 most potent chemos at the time, using a hepron lock (multi-port IV device) that had to be changed daily. The meds were so strong that I was told that they had to use different veins to push the meds because if they duplicated it, as long as I do live - that vein would die. Each chemo round would take over 4 hours to hand push, because it had to be done extremely slowly. One of the medicines made everything taste like pond scum (meaning unbelievably/undescribably gross), one of the medicines made everything smell like everything tasted and the remaining chemo med was like having a fireball injected into your body that you could not escape. I tell you the truth that it was hell on Earth. A torment that I wouldn't wish on my worst enemy!

My dr told me that by all rights I should have already been dead when they found it and that it had to a God thing for me to be around - medically there was no explanation for it. The number of times they could have declared me medically dead are so numerous it'd make your head spin - little to no pulse, low blood count, no breath, etc.

Among the many results of me taking chemotherapy, I was diagnosed totally deaf in both ears. My highest mark on the chart was well below the lowest decibal on the chart and both ears matched exactly! BY GOD'S AMAZING GRACE, I am NOT deaf! I have never had to wear a hearing aid a day in my life!

In the course of my treatment my husband and I would be told that we could not have natural children, because they needed to remove my female reproduction system (TAH). Being so young, I begged them to not do it. As the discussion went on, my vitals dropped dangerously lower and the partner dr said we'd have to table the discussions until another time. He also said that while they really needed to do this procedure, they were highly concerned that I might not walk off the table because of the spread cancer and opening me up could finish me off. We would not return to this topic for a while.

The drs told my husband and family SOOOO many times that I would not make it through the hour, I was just too sick and they'd been doing all that there was they could....literally hundreds of times....

and I'll try not to be too graphic here, but I would vomit so frequently that literally all I could eat would be a single saltine cracker for 2-3 weeks and STILL couldn't keep that down. It was
U-G-L-Y to say the least!

In February 1987, I had an appointment to see the dr to see if my blood count was high enough to take another round of chemo. I was sitting on the exam table when the dr came in wearing party hats and blowing noise horns! I could not believe what I was seeing - it hurt me and angered me. I told him it was not funny and I didn't appreciate it. He told me that he could fully understand my position. Then he explained why he was behaving in such a manner. My titers were less than 5! That meant that there was no ACTIVE cancer showing in my body!

But he again explained that they knew the cancer was "asleep" and that I'd have to continue taking chemo for a couple of months.

"Asleep" is NOT "Remission". As he explained it to me -
"Remission" is when you have the condition and ALL of the diseased cells are currently inactive.
"Asleep" is where you have the condition and a PORTION of the diseased cells are currently inactive and a PORTION of them are active. Those that are "asleep" will in effect "wake up" be harder to kill out, double in count rapidly, etc.

The statistics (at the time that I had choriocarcinoma; they may have changed since then):

. It attacks Oriental women in their 70s - 80s.
I'M CAUCASION AND WAS 22! There were no known cases of it striking caucasion previously!

. It is rare - most doctors have never had a real case, and IF they've heard of it - it's only been in textbooks.

. It's rare because it "falls asleep" as above. (Most cancers go into remission instead.)

. It mimicks pregnancy IN EVERY WAY - just no baby!

. It can double its total cell count in an hour!

. The umbilical chord has 3 components BEFORE it officially forms the umbilical chord. One of them is called Choriozon. (I think I spelled that correctly.) This is where this cancer gets its name.
It is in the uterine area, but is NOT "uterine" cancer.

The cancer spread throughout my body, attacking my lungs, liver, etc. I never had asthma until after this cancer. Every year since the onset of the asthma it has gotten progressively worse. I am now considered an EXTREME asthmatic - any kind of smoke at all and I immediately suffer severe attacks.

As I have told you a lot (but still not all) of the "bad", let me tell you about some of the "good" that GOD has done!

. I am NOT deaf! I've never had to wear hearing aids a day in my life, as I've already said!

. I'm CURED - not Asleep or in Remission!!!

. God has granted us 3 healthy natural kids! (G,B,G)
True to Romans 8:28 (NIV) - "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." - God turned the "worst day of my life (Dec 3, 1986)" into one of the best days of my life! Our son was born on Dec 3 several years later! (Yes, there's a story behind that too - one that only God could do!) He took the bad and made it good just as that verse says!

. April 23, 1987 was my last chemotherapy. The dr. said that we could not even think of becoming pregnant for at least a year IF my rigorous testing stayed clear. That the sonograms done my next to last chemo round showed that the hole in my uterine wall had completely closed and that if they didn't know of the previous films, they could not detect that anything had ever happened there! He explained that THE SOONEST time frame to revisit the idea of pregnancy if testing was well would be the end of May or the beginning of June the following year. As I often do when I pray, one night I talked over my desire to have a baby with the Lord. I had my Bible in hand and asked God to show me what He'd have me to read. My Bible fell open to the story of Hannah. Perhaps you're familiar with that story; if not SP mail me and I'll tell it to you. One month later from that night, we learned that we were going to have our oldest daughter! (We didn't know what the sex of the baby was - wanted it to be a surprise.) That timing was the end of May the following year - the earliest time frame the dr had said it would be ok! There were a lot of special pregancy issues/concerns, but she was born with Apgars of 10! All of our kids were born with that level of Apgar scoring!

.GOD did all of this - not me, to be clear. HE healed me as He is the Great Physician (Jehovah Rapha)! All I am and ever will be is because of Him! He is my Adonai (Lord and Master)!

I am so thankful for what He has done! I am thankful for every breath and heartbeat...for my family and my friends and all that He continues to do for me! Celebrate life with me - it is precious and not to be taken for granted! Celebrate with me!

Thank you for your time, as I know this is long. If after reading this, and you have questions about my cancer experience, the stories behind what God did regarding each of our children's births, or you want to know more about our loving, faithful Father in Heaven, it's okay to ask me.

Edited by: ROSEGARDEN6 at: 5/3/2008 (19:48)

Have a wonderful day! Life is good!

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Cindy

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NAN71486
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My name is Nancy, age 57, from Zwolle, Louisiana. It was August 2002 when I had a kidney stone attack, again! After 2 hours of suffering, I saw that I wasn't going to pass the stone on my own this time! So, I called my husband to come home from work and take me to the emergency room. After getting a pain shot, I guess I passed the stone because the pain all went away! I was very releaved until the doctor asked me to please stick around and talk to him!

Yeah! I knew something else was wrong! I had been really weak for a long, long time. My stools were dark which I knew meant blood! However, I thought I had a bleeding ulcer and had been being very careful about what I ate. I had all the symthoms of the ulcer! However, my blood count came back so low that I had to be admitted into the hospital and given 4-5 units of blood. They tested me to see if it was an ulcer, but it wasn't. After being released from the local hospital I was sent to Willis Knighton Medical Center South in Shreveport for the colonoscopy. A tumor was found and I was told in front of my whole family that I had colon cancer! I was in shock and everything that happened for the next two weeks is blurry! I was scheduled for surgery in 2 days. I overhead a nurse say that I was nicked during the colonoscopy and they did surgery a day early! Everything went well and I was released from the hospital in about 5 days. The doctor said that I could shower so that night I did. But while in the shower, I saw brown fluid seeping from the incision down the middle of my belly! I didn't want to scare my husband, so I didn't say anything. But first thing the next morning, I called the doctor and was told to go straight to his office. Things progressively got bad FAST after that!!!! I cried when I checked into the hospital and saw one of my favorite nurses! She said to please stop or she was going to cry with me! My oldest daughter was with me on this day! Soon my whole family was back with me again. After this surgery, I was still looking normal. But soon, I was burning with fever and had to be taken to surgery a third time within 10 days. This time I was put on a resperator, had a colostomy bag and was left open to heal with just big "rubber bands" holding me together. I spent almost 2 months in the hospital. I came back home in October! Because of the surgeries going wrong, I wasn't able to start chemo until the next year in Feb or March! I was lucky with the chemo, I had a new drug from Europe that had very few side effects. As soon as I finished chemo in July 2003, I went back to have my colostomy surgery reversed. Quess what? While in ICU, I got sick, threw up and burst all the staples! Back to surgery every day for weeks! I was left open with see-though plastic or something over my belly! They took me to surgery everyday to clean my belly out. I was put to sleep everyday and then they gave me something that made me think I was in a cartoon or something! LOL At least I was out of it and didn't know what was going on half the time!

I eventually had skin graphs on my belly! When I left the hospital I was sent to rehab for 3 weeks. In October (again) I got to come back home. I stayed in the weakened state for over 2 years. Once my granddaughter, Jaci, was born in July 2005, I started babysitting her. Slowly my strength built up as she grew! Then this past Sept. 2007, they found that I have type 2 diabetes! Now I can walk, mow grass, dance, BREATH! My life has changed. I feel like I really have a life again!

Of course, I've left out a lot of details! I almost died several times in 2002 and 2003. I had viral, staff and even a yeast infection in my blood! I have a picture of my horrible belly on one of my blogs! My new surgeon says he wouldn't touch me with a 10-ft. pole to try to put my belly back together! My surgeon from the surgery changed from dealing with internal medicine and is now a breast cancer surgeon!!!!!! Hope I don't get breast cancer!!

My last colonoscopy showed no sign on cancer! Yeah! Said I didn't need another one for 3 years. So my next colonoscopy will be in 2009.

Edited by: NAN71486 at: 5/21/2008 (13:58)
N a n c y - Louisiana


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CAROLYN0107
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5/2/08 3:48 P

The story of my ovarian cancer is short. In 2004 I had a total hysterectomy with ovaries taken out as well. Three days after surgery my GYN told me that I had a tumor but that the lab wanted to do further studies. One week after surgery I was told that my "specimen" was being sent to Stanford University in CA for further studies. Three weeks and one day after surgery I was called that I had a very rare type of ovarian cancer. It was a thecoma-granulosa composite tumor.

My cancer was stage one and was already surgically removed before I knew that I had it. I did not need chemotherapy nor radiation. The only thing that the oncologist said was to get a checkup with a GYN every six months and to make sure I had my annual mammograms.

June 15, 2008 I will be a 4 year Survivor.

I thank God that my cancer was found early. Many ovarian cancers are found in late stages.

Carolyn

Co-Leader for "Surviving Cancer" Team.
Leader for the "Bongolo" Team (private)

BLOG:
carolyns-capers.blogspot.com/

"God does not send us into the dangerous and exacting life of faith because we are qualified; He chooses us in order to qualify us for what He wants us to be and do." Eugene Peterson






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WINDMAIDEN1's Photo WINDMAIDEN1 Posts: 284
9/10/08 5:17 P

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Hi AUDREYM82,
I think you are a incredible women that went though a very hard time with grace! You have come through will strength. You will be able to help the patients that you see with compassionate.
I am sorry that this has occurred in your young life!
I know that every single person in this group are here for you any time that you needed us!
My thoughts and prays are with and and everyone else that needs it.
God Bless all of us who fight the battle, we all Will Win
Sheri

Sheri

"Set your standards high and be disappointed, set them low and be amazed."
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“I don’t know the key to success, but the key to failure is trying to please everybody."


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Here's my story:

Since I was young (7 or 8 years old) I had always felt a little pain on my lower left side of my abdomen. It would come and go, sometimes not having it for months at at time. As a teenager, I was told that I was just feeling when I was going through ovulation. For years I just assumed the pain was the ovulation.

In September of 2003, I started getting the pain again and this time the pain didn't stop and it just kept getting worse and worse. At around 11pm I told my parents that I couldn't take the pain anymore and that I had to go to the hospital. My parents took me and the doctor told them that I had a urinary tract infection and prescribed me antibiotics. My parents took me back home but the pain got even worse. I was crying in pain and I told them to take me back to the hospital.

When we got there, they admitted me and started giving me meds to calm the pain. In the morning they took me for a CT scan and found that I had a massive cyst on my ovary. I was taken to a room and I had to wait for the doctor so he could do a biopsy. My parents and I waited and waited and no one had any information as to when I would be going for the biopsy. Finally, a female gynocologist came to my room to examine me and she asked me who my primary doctor was. I told her and they called him since he was doing rounds at the hospital anyways. He came and examined me and he could feel the cyst with his fingers. He ordered me to be taken into the operating room early the next morning.

The next morning I had the cyst removed (bikini cut) and I stayed in the hospital for 2 more days to recover then I was sent home. I had to go see my doctor a couple of days later to remove the stitches. At the doctors office, he removed the stitches and then told me that the cyst had been biopsied and they found small traces of cancer.

I didn't know what to say, do, or how to react. I was in complete shock. He referred me to a gynecological oncologist and told me to call him and make an appt. I came out to the waiting room where my brother (who had given me a ride to the appt) was waiting to drive me home. I got in the car and he asked what was wrong because I looked like I had seen a ghost. I told him what the doctor said and just broke down hysterically in tears. My first thoughts were that I was going to die. I was only 23 years old. I hadn't finished graduate school or gotten married or had even really begun my life. How could I have cancer??

I saw the oncologist and I had surgery to remove my left ovary. I also had lymph nodes removed and my appendix. I went through 12 weeks of chemo (going 5 times a week with 3 different medications plus the steroids and benadryl that went along with them). I lost most of my hair which was the most traumatic thing to me and I had to have a PIC line put into my arm because my veins were too small to handle being pinched every day.

That was 3 years ago and I have been cancer free since then. I joined Spark so I could lead a healthy life and remain cancer free. I also graduated with a Masters degree in Psychological Counseling and I am looking forward to becoming certified as a fitness instructor.

Thank you for reading my story.

******Audrey******
Clifton, New Jersey



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8/10/08 1:57 P

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The probiotics are a concentrated source of the same beneficial bacteria you get in yoghurt and other fermented foods. They help replenish the flora in your large intestine if that has been depleted with antibiotics or whatever. The flax meal is good for adding more bulk. You may have other issues related to your colon surgeries and how it effected the muscular structure of the intestinal walls.
Su

The more difficult your health challenge, the more wisdom you will gain by overcoming it.
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Good night all - will keep you in my prayers. Hope you have a pleasant night and a long sleep and that you awaken feeling well and comforted from all your troubles.

Su - I don't take probiotics, don't know what they are, but I do eat yogurt and will try flax meal. Anything that works. Thanks.

Joan W

Joan W in Appleton, WI
Married 2-22-64
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SP 10-11-07
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8/9/08 9:28 P

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Hi Joan. I was diagnosed with Stage 3 colon cancer in 2005 and had surgery that August to remove 10cm of my upper right colon. I declined chemo but became quite vigilante about my diet and lifestyle after that. Never had to have a ostomy bag but did have loose bowels for a while afterwards. Have you taken any probiotics or do you eat yoghurt? Flax meal might help as well.
Su

The more difficult your health challenge, the more wisdom you will gain by overcoming it.
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Hi, I am Joan W. from Wisconsin. I am 73 years old, married with one son, two grandchildren. In August 2003 I went to see my family physician for my annual checkup. He recommended I get a colonoscopy. In early September I did get one and was told there was a polyp too big to remove at that time. In Late September I had outpatient surgery to remove the polyp. Later the Gastroenterologist called to say there was a small amount of cancer and he wanted to see me and my husband in his office. In early October I had the lower third of my colon removed. I had an ostomy bag for a while, that was reversed in December 2003. I didn't need either Chemo or radiation, for which I am very thankful. The cancer was Stage 1 and is gone. I'm still having a few problems that keep me close to the bathroom. I'm wondering if Fiber tablets are the answer. Will probably experiment with them really soon.

I joined SP in 2007. I weighed 226 lbs and was having trouble with my knees. Since I'm not happy about surgery of any kind anymore, I didn't want to have knee surgery. I have lost 40# so far (current weight 186#) and my knees are feeling better.

Joan W


Joan W in Appleton, WI
Married 2-22-64
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8/4/08 10:03 P

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Before I was diagnosed with breast cancer, I had no idea there was more than one kind, I had always thought "breast cancer was breast cancer". I remember the weekend in between the Friday I found out the results of my lumpectomy was cancer, and seeing the doctor on Monday; I looked up "breast cancer" on the internet and was completely overwhelmed, not to mention scaring myself to death too. For that reason, I advise trying NOT to do too much research until you know exactly what you are dealing with. My fears got the worst of me, and before I saw the doctor on that Monday, I had myself convinced I was going to die very soon.


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

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8/4/08 3:33 P

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Although each of our cases is "just 1 more" in a vast sea of stories, each one is unique and each one is important. I'm certainly learning as I read through your stories. Even those w/ the same type of cancer as ours has a different experience...it depends on many different things.
Some of you know some of my story w/ colon cancer, others don't. At a more convenient time, I'll also write mine here. Thanks to those of you who have.

Edited by: 53PINKROSES at: 8/4/2008 (15:32)
Only fear the Lord and serve Him in truth with all your heart, for consider what great things He has done for you. (I Samuel 12:24)


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"Uncommunicated love is wasted love."


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January 08 I was experiencing sinus infections.. then came down with a wicked flu bug.. I woke on morning in February with a lump on the side of my neck. I thought it was a swollen gland.. It got a bit smaller after treatment with more antibiotics.

When it didnt go away late february I went back to the doctor.. He took one look at my neck and felt it, then he measured it the look of concern on his face told me all I needed to know..

He sent me to an oncology surgeon, it took 2 weeks to get in to see him... omg the wait. in the mean time the Dr. orderd ct scans with contrast. I told him to please call me with the results asap.
My Dr. called me personally and said the scans came back negative. ahh repreive.. He said to still see the surgeon.

I got a needle biopsy, the surgeon called and said he found lymph in the tumor. I didnt know what that meant I thought it meant infection.. He said I need to have the tumor which was in my salivary gland removed. He removed the gland and tumor and called me via cell phone on a saturday to inform me I had Lymphoma. ARGH! The phone cut off and he never called back.

I called my family doctor's office and talked to the on call Doc. He called my primary Doctor who called me and calmed me down. Thank God for that man.

I went to see an oncologist the following tuesday,
I took my films and pathology report from the hospital. The doctor said I had nothing to worry about I would be fine.. He took my film and report and left. In walks an oncology nurse with papers about chemo treament and setting up time for bone marrow and pet scans.
I left the office in a daze. My brain was numb, the doctor said I would be fine..

The following day my husband called me at work and said he didnt feel right about this doctor. He didnt even examine me! I was so happy to hear a doctor say you will be all right I was ... okay he is the doctor.

I contacted the lymphoma society and it turned out there was a seminar being held here in Scottsdale with leading lymphoma doctors for question and answer session.

I called to register for the seminar and was asked what type of lymphoma do you have..

I realized I didnt know my own diagnosis!

I called the oncolgist office and got the diagnostic report.. I took it with me to the seminar.

I met with one of the top lymphoma doctors in Arizona, he looked at my report then asked me some questions.. one important question who read your slides?

Dr. Miller told me to call his office on Monday, make an appointment for that week and bring my sildes and films he would have his experts read them before any treatment would be done.

I am now being treated at the UMC Cancer Center in Tucson. I started chemo last friday.

I still feel like this is a dream. My head is still buzzing. emoticon

Michelle
Nothing Tastes As Good As Thin Feels
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7/19/08 9:42 P

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In May 2004, I was at a Memorial Day cookout with my family. For weeks I hadn't been feeling right but I didn't really think anything of it. The morning of the cookout I was having labored breathing and I had a low fever. I went to the cookout but after an hour, my mom and my husband ganged up on me and decided I needed to go to the emergency room.

After spending a day in the emergency room getting a chest xray and fluids, the doctor sent me home with pneumonia. Apparently, because of the holiday weekend, the was nobody in radiology to read my xray. The doctor saw a shadow and thought it was fluid in my lungs.

The next day, a radiologist was looking over the films and saw that it was not fluid in my lungs but possibly a mass in front of them. They called me and said they would like me to come in and have further testing. I went back and had more bloodwork and a CT scan. I was so nervous. Nobody would tell me why I was getting more tests done. Then they told me....I had a baseball sized mass in my chest.

I was sent to another hospital were I had a biopsy to determine whether or not the mass was benign. I spent 3 days in the hospital. I have 2 kids, at the time they were 2 and 4. It was so difficult having to lay in the hospital worrying about what is wrong with me. Cancer is such a scary word and all I could think about was if my husband and kids were okay.

After a few days I got the call that my pathology report came back......it was inconclusive!!! I had my biopsy done on May 31st, on June 6th I got married, and on June 10th, I was back in the hospital. This time I had open chest surgery to remove my tumor.

For 2 weeks I didn't hear a word, then I got a call from the oncologist to schedule an appointment. Why do I need to see an oncologist??? What is going on? My PCP never called to tell me I had cancer! It turns out I had Stage II Hodgkin's Lymphoma.

As soon as I was recovered from my surgery, I began chemotherapy. I had 12 rounds of ABVD. I am so lucky for the family I have. I have the best parents, the most caring husband, and 2 such wonderful kids!!! I started my chemo the end of July 2004 so nervous of what to expect. What I got was mouth sores, extreme fatigue, nausea, and bone pain (the shots I got to produce white blood cells had some painful side effects). Through it all I was able to maintain my happy disposition :) I just told myself I had the good cancer....Hodgkin's disease is basically curable if caught early enough.

I finished my chemo treatments in January of 2005. Usually following chemo, Hodgkin's is treated with radiation. Thankfully, because of my surgery, the doctors decided I would not need the radiation. It has been 4 years now and I feel great and have had clean scans ever since.
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7/19/08 2:36 P

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Glad you are doing well. I can empathize with you on that lovely chemo before transplant. It does kick you to the curb but coming out on the other side in tact is well worth it. What does not kill you makes you stronger. Welcome!

To insure good health: Eat lightly, breathe deeply, live moderately, cultivate cheerfulness, and maintain an interest in life
--William Londen


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AOXOMOXOA's Photo AOXOMOXOA Posts: 4
7/18/08 6:08 P

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2003 seems like where it all started, but it might have been earlier than that. I felt so down, so depressed. I hated my life, wife, work, and blamed it all on them. I wasn't doing anything, going anywhere, I was fat and really unhappy. I started seeing a marriage counselor, and told my beautiful loving wife I thought I wanted out.

Fortunately someone got me to make a routine physical appointment with my primary doctor, and there it was discovered that I was severely anemic. I've been a rock as far as health goes, and other than a big knee surgery had never much need for medical attention at all.

The hemoglobin was at 7.0 (should be 13.5-18 for males) and it explained why I was so dizzy, sunlight hurt my eyes and I couldn't walk across the parking lot without feeling like I was going to pass out. I was sent to a series of specialists which solved nothing, when in December 2003 I was given an appointment to see a hematologist.

As I walked up to the office door, the placard says, Hematology and Oncology... that stuck in my brain and as I the Doctor looked at my chart, he looked up from my record and said.. "I need you to come in in the next couple days for a bone marrow biopsy".

My brain raced... I really had no idea what that was, but I tried to act cool and asked him why?

"Oh you have Multiple Myeloma", he nonchalantly said and I just as nonchalantly asked "Are we sure, or is this a maybe thing." "Oh no, the numbers here show it, but the BMB is gold standard for diagnosis".

Well they did the BMB, and it came back that the cell in my bone marrow were about 78% cancer cells, which explained my anemia. Treatment consisted of immediately daily chemo in the form of many pills of Decadron and Thalidomide, and preparation for a bone marrow transplant.

My response was very strong, and by June the preparation for the transplant was well on it's way. Funny how you thank about things, but a bone marrow transplant is nothing more than a way they give you massive chemo. I described it as trying to paint your house by just dumping a massive amount of paint on it and hoping it all gets covered.

The process was long and involved, altogether I would say it was about 7 months all told, and I was one who did well with very few issues due to the immune suppressed system. Since then things have been quiet, and I have a very day-to-day attitude about life now.


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7/3/08 11:19 A

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My story is still in progress.

In late April of this year, I discovered a small pea-sized lump in my right breast. A few days later, I called my gynecologist. He was very good about bringing me in immediately. He, too, could feel the lump so he ordered a mammogram and possible ultrasound all the time reassuring me it's probably nothing - I'm too young (39) - there's only a 1 in 4 chance it's cancer.

The mammogram also showed the mass so the ultrasound was done as well. It showed up on that, too. But still they're reassuring me that it's probably benign. But they need to do a core biopsy to find out.

So within two weeks of discovering the little pea, I'm told I have infiltrating ductal carcinoma of the right breast and the tumor was determined to be grade III estrogen-receptor negative, progesterone-receptor negative, and Her2/neu negative. At that point, they were pretty confident it hadn't reached my lymph nodes so the plan was to do a lumpectomy and sample the lymph node nearest to the cancer site.

In the meantime, I had an MRI of both breasts. Unfortunately, that showed two more troublesome spots, but they were very close to the main lump so if they could find them on ultrasound the morning of my surgery, they would just tag them all and still be able to do a lumpectomy. The little buggers couldn't be found by ultrasound. But the surgeon and I discussed it and decided to go ahead and get rid of the first lump and check out the lymph nodes.

The lymph node they took turned out to be cancerous as well so they did a complete axillary node dissection in my right arm. 2 out of 13 lymph nodes were cancerous. They had also managed to capture not only the main lump which they knew was cancerous, but also one of the other two lumps they had seen on the MRI. It was determined to be pre-cancerous.

The lymph node discovery changed everything. A PET scan was ordered to check out my organs and bones. Plus it was decided that I would have to do chemotherapy. My cancer isn't affected by hormones (that's what all those negatives mean) so none of those pills that some woman are able to take with breast cancer would help me.

The PET scan found a spot on my liver but everything else was clean. So a stomach MRI was ordered to check out the spot. The MRI picked it up too, but still didn't really tell them what it is. They decided to send me for a SPECT scan and an ultrasound as well. This particular spot doesn't seem to be something they can biopsy like they did with the breast. So they had to decide from all these tests if they "felt" it was cancerous or worrisome enough to go ahead and do liver surgery to get rid of it. They've decided they don't think it's cancerous and are going to watch it for now.

After meeting my oncologist, we decided I should have a port installed to receive the chemo since the one drug is ultra-nasty and can cause all kinds of tissue damage if it gets anywhere but directly into a vein. My breast surgeon said we might as well go after that last lump at the same time. So off I go for another MRI, since that was the only way they could see it, so they could tag it with a little titanium chip. Out of everything I've had done so far, I think this MRI was the worst. I was only 2 weeks downstream from my lumpectomy and axillary dissection. My right arm didn't have full range of motion and lifting it above my head was painful. For this MRI, you have to lie on your stomach, dangle your breasts into a couple of holes and place your arms above your head. I could have cried.

But my second surgery captured another pre-cancerous mass and I successfully got my port so I guess the discomfort was worth it.

I'm doing (6) three-week cycles of chemo. I've already had the first treatment and go back for my second treatment next Thursday. My chemo will last until early October if everything goes as planned.

After the chemo, I'll have radiation treatment. I'll also need to go for another stomach MRI to see if the chemo changed that spot on my liver at all. And I'll have another breast MRI so the surgeon can be sure that the mass she removed was indeed the one that had been seen on the second MRI.

Thank you for reading my story if you made it this far!

Lori
TALSHIAR's Photo TALSHIAR Posts: 5,076
6/26/08 2:37 P

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After 2 yrs of menopause, January 2007 I started spotting again, but my mind did not grasp the fact that it was gyn bleeding. I assumed wrong that I had blood in my bladder because my Dad had bladder cancer that metastasized and he died from it. My mind was all prepared for bladder cancer and that I would die. February 2007 I finally went to the dr. (urologist) and after a number of tests it was determined I should go on to a gyn dr. and was finally diagnosed April 26, 2007 with uterine cancer. And then sent on to an oncologist and surgery was June 6, 2007. After surgery was radiation which ended in September. By December I was feeling well enough to know I know longer liked the way I looked and I joined spark. And I have been doing well ever since, trying to be as healthy as possible so if I get cancer again I can better deal with it. Right now my appts. are every 4 months, next one being 7/1/08. Now I don't worry a whole month before them, just about a week and I'd love to be able to speed the week up so I can get to my appt. faster so I can have another 4 months of somewhat carefree living. But since I can't make the time move faster, I'll just deal with it by keeping busy.

Co-Leader SP Class of December 21-27, 2008

Music washes from the soul the dust of everyday life.

The colors of your imagination are a gift from God.

“I expect to pass through this life but once. If, therefore, there can be any kindness I can show, or any good thing that I can do to any fellow being, let me do it now as I shall not pass this way again.”


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MANINTVELD's Photo MANINTVELD Posts: 155
6/26/08 11:35 A

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I'm sorry I've been putting off my story but, even after 8 years, I still can't 'completely' wrap my brain around it and come to grips with what all happened. Although I'm thankful for being alive, it's hard to look back and reflect, so much had happened; not much family and friend emotional support, job loss due to my illness (a management job I really loved and hoped to move up in the company), I guess just alot of "poor, pitiful me" syndrome .. anywho, I won't go into everything but it still seems like a pretty long story so, here goes:

May 2000: Had an extended abdomen on the left side, that caused alot of pain. Put off checking it out for months before finally going to the emergency room. Ruled out bladder and kidney infection before having a ultrasound done, 17 cm. endometriosis discovered on left ovary. Surgery performed to remove endo but, suspicious tumor discovered on left ovary and was "accidently" cut into, leaking fluid into my body. Tumor sent in for biopsy.

June 2000: Biopsy of tumor ruled it Papillary Serous Cystadenocarcinoma. Met with gyn/onc who assured me my right ovary was fine and I could have children in the future, "what a relief" I remember thinking! Due to tumor leakage, needed to be scheduled for "second look" surgery, was told would be performed in July to give my current incision time to heal.

September 2000: Waited 3 months for Dr. to return numerous phone calls from myself and the original surgeon to FINALLY do something about my situation. My surgeon was disgusted and eventually found me another gyn/onc which happened to be further away from me but, at that point, I was so desperate I would have traveled anywhere! This new Dr. told me that the wait was too long and due to the fact that my records showed I had a tumor on my right ovary as well (which was never told to me originally), it was best to have total abdominal hysterectomy with bilateral salpingo-oophorectomy as well as "second look" surgery. Ironically, the day before my "finally scheduled" surgery, my first gyn/onc called to inform me that my situation was more critical than he realized and that I needed to schedule for surgery soon .. in which I promptly told him what I thought of his sorry excuse for a human being and that I actually had a Dr. that gave a crap about my situation and low and behold, I was having said surgery the next day. I then told him to "kiss it" ..

October 2000: "Second look" surgery was successful but, to be on the safe side, was started on 3 rounds of chemotherapy, Taxol/Carboplatin. Became anemic after first round so, had to go in every week for Procrit shots. Final chemo December 2000.

Present: Still in the clear! Learned alot about myself during this journey and had so many blessings given to me because of it. Good or bad, God had a plan for me! Married the man of my dreams, we have no children of course but, our 3 wonderful dogs are our kids, no more stressful management jobs .. found Cake Decorating was what I was meant to do all along, I live a quiet life .. get hit with a few curve balls now and then but, we're handling it just fine .. God doesn't give you more than you can handle ..

~*~Deidra~*~
8 year Cancer survivor-Ovarian-Stage Ic

*Things happen for a reason so, don't question it and just learn from it!*
~Me

"Strength comes from the inside but it must be fed from the outside to be able to grow." ~Richard Manintveld


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6/24/08 7:24 P

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About three years ago I started having problems with what I thought was constipation. I was diagnosed with IBS with constipation. After several trips to the ER, same diagnosis, nothing being done; I was asked if I would be in a clinical trial for IBS, that didn't work. I was put on all kinds of OTC and prescription meds, nothing worked. I was then told by my GI's doctors partner that this was all in my head, you have IBS, your not cooperating, deal with it. That did it, in August 2006, I changed my PCP, GI dr. and went to another hospital. They ran routine tests and came up with the same diagnosis. (At least they were doing something!)

FF to April 30, 2007, I still had the same pain, by now I had lost control of my bowels and was bleeding rectally. I called my PCP and he told me to come right in, I was so sore, he called the surgeon, who admitted me to the hospital, I was given antibiotics. I was to have surgery the next morning for removal of a peri-rectal cyst. That was on Tuesday. Wednesday, my husband and I were told that I had Anal Cloacogenic Carcinoma, Stage II, MO, NO. A rare cancer. My PCP, Gi dr., and surgeon were all stunned. I was told that I had this tumor for about 1-1/2 - 2 years. I was started on three cycles of Mitomycin and three cycles of 5FU. I also had 30 days of radiation.

I had another PETscan on August 1st, the following week we went to my oncologist for the results. He said that everything looked good. I had been having pains in my lower ab area for a few weeks, the pain kept getting worse. While at the oncologists, I doubled over in pain and started crying. He immediately called the hospital and had me admitted. He also called the surgeon who did my previous surgery. I was admitted and scheduled for a possible colostomy. They had to do a permanent colostomy and an Abdominoperianal Resection. I had to have this done, not because of the cancer, but because of the damage to my colon from the radiation. I also have bladder damage due to the radiation. I was discharged on 8/16. On 8/27 I was rushed back to the hospital. My WBC was up to 20,000, I had surgery to drain an abscess. I was still in pain, they did an ultrasound and found 2 more abscesses. Two days later they drained both abscesses. After 2 blood transfusions, pnuemonia and severe infections; I was finally discharged on 9/11.

I have been diagnosed with PMR and Neuropathy due to the chemo. I will have my next PETScan in August.

I am now walking on my treadmill for 30 min. a day. Lately I have at times been "walking through the pain." That's okay, I am alive and that's what counts.

I get support from my husband, family, friends and the people on this board!!

Taking one day at a time; and thanking GOD for each day...Sharon



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MARTHA-ANN's Photo MARTHA-ANN SparkPoints: (79,220)
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6/24/08 4:10 A

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I woke up at 3am in the middle of the night December 20th 2007 with a bad pain in my right side, the bed was covered in blood and I was taken straight into hospital.
After a scan they said I had a cherry sized pendunculate polyp on my cervix which needed to be removed. They did it the same day, the bleeding stopped and I was allowed home but the pain in my side didn't go away.
I actually thought it was appendicitis it was so bad.
I was taken into hospital again and this time they did an internal scan which showed a larger tomato sized polyp underneath my right fallopian tube. This was removed the same day but when I was allowed home the pain was still there so I went for another scan this time in the big scanner. This revealed a large 9cm mass inside my right fallopian tube. This was the cause of the pain, they said it was similar to an ectopic pregnancy.
Two days later I went in for it to be removed. The doctor was hopeful it wasn't anything and he managed to save my fallopian tube.
The removed mass now measured 14 and a 1/2cm so was growing pretty fast and it weighed 9lbs. It was sent away for testing along with material from a D&C which they did at the same time.
Both came back cancerous so on 15th January 2008 I had a hysterectomy, double salpingectomy, double oophorectomy plus removal of my cervix and cervix cuff as the cancer had spread downwards, though luckily not through to the wall of my stomach or that might have been a different story!
Very luckily everything was enclosed which meant I didn't need chemotherapy but I was given weeks of radiotherapy medication instead.
Someone was definitely watching over me as I had only had a smear test two months previous to this which came back clear so if I hadn't had the pain and hemorrhage I wouldn't have known anything about it and it might have been to late by then.

I received nerve damage to my back during the operation which resulted in Piriformis syndrome. This is where the sciatic nerve gets trapped between the piriformis muscles where it crosses the back.They swell up and trap the nerve which is agony. I was pretty much flat and inactive for eight weeks and have only recently been told I can lift again, I still have difficulty sitting for long periods and am building up my walking as I get awful backache. I've already had six weeks physiotherapy and still do gentle exercises every day. They say it can take up to eighteen months to two years for it to recover...but even that is infinitely better than what could have been.

I've had psoriasis since the menopause and it's been terrible while all this was going on, so sore and itchy but it's now settling down again now.

I have been given the all clear now and only need to go for one more check-up in November. Then yearly for the next three years.

I had gone partially deaf in February 2007 which they said was due to psoriasis in my ears but things took a different turn as, after a deep cleaning procedure, the hearing came back in my left ear but they discovered a growth on my right eardrum which they said looked benign.
I was worried as they had said that about the other lump.
On April 7th I went into hospital for it to be removed and thankfully it was benign and I can now hear perfectly. I still have psoriasis in my ears but everything is fine at the moment.

I can't praise the doctors and nurses enough, they were extremely busy but were kindness itself and took time to explain and listen to worries and queries as did my own doctor. People moan about the National Health Service in this country but really they do a fantastic job.
Friends and family are the greatest gift we've got, they are the strength you need to see you through and I can't thank mine enough...value yours!

I seem to have had a lifetime's illnesses in a few short months, everything seemed to happen at once and hopefully that's it for me now.
Thanks for listening. emoticon

Edited by: MARTHA-ANN at: 3/20/2012 (04:27)
martha-annsmiscellany.blogspotMartha-Ann, Yorkshire, England.

You are welcome to browse my photos at www.flickr.com/photos/martha-ann www.flickr.com/photos/martha-ann

And read my poems and prose on my blog page at martha-annsmiscellany.blogspot.co.uk

It does not matter how slow you go as long as you don't stop. Confucious.

You only get out what you put in.


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MOM2ACAT's Photo MOM2ACAT SparkPoints: (160,547)
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6/23/08 9:53 P

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I found the lump in my breast in March of 2003, the day after we found out my mom had Non Hodgkins lymphoma. After a mammogram, (my first and only, I was 39 at the time, and my insurance does not cover them until the age of 40, but this one was covered because it was diagnostic) and an ultrasound, it was found I not only had a lump, but I had two, the one I felt was pea sized, but there was one behind it that was 5 cm. that I didn't feel. I had a lumpectomy, and after talking with the surgeon, oncologist and giving it a great deal of thought, I opted for a bilateral mastectomy. My maternal grandmother died from breast cancer in her 40s, and an aunt (my dad's sister) had breast cancer also. I had my surgery May 2003. I had 19 lymph nodes removed, and 5 were cancerous, on the right side with the lumps. The left side had precancerous cells.

I had chemo, then radiation. My mom was going through chemo at the same time. She also was hospitalized with pneumonia during the summer of that year, but thank God, she made it through. She is cancer free today.

I have been on Lupron shots every 3 months since Feb. 2004, which put me into early menopause, which meant putting up with hot flashes and night sweats. I was on Tamoxifen for awhile, then Arimidex. In the winter of 2006, my left hip hurt much of the time, I thought it was arthritis. I used too many NSAIDS and ended up with a bad case of gastritis. I was also losing weight too quickly, I had lost my appetite due to my stomach problems. My tumor markers where also going way up, so my oncologist ordered a CT/PET scan, which I had in Feb. or March of 2007, followed by a bone scan, which confirmed it had spread to my bones.

I remember the day I was called to come into the office; my oncologist's main office is out of town, he comes to the Specialty Clinic at our local hospital on Tuesdays. I got the call the Monday after Easter to come into the office the next day, instead of my regular appointment which was for the following week. The nurse told me it was in my bones, but not in any of the organs.

I remember sitting on the table in the exam room, when my doctor walked in I couldn't help it, I just burst into tears. He gave me a hug, and told me it was not a death sentence; that what I had was very treatable, and he had another patient who he has been treating for bone mets for 20 years and now, and that she was still going stong!

Sorry for the long post, I'll try to make the rest of this short. I went for radiation on my hip where most of the mets were, and since April of 2007, I have been on Zometa and Faslodex, both which I get once per month.

My last bone scan in March was good, the cancer is stabilized and doesn't appear to be spreading. I am doing well, still working, and except for the day of and the day after a treatment, feel pretty good most days.


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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DEUCE119's Photo DEUCE119 Posts: 12,512
6/23/08 7:02 P

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Hi! I was diagnosed with stage 2 Ovarian Cancer almost 4 yrs ago. I had never hed trouble with my periods. I had an ovarian cyst, and never had another period. They looked and tried to figure it out but couldn't. Their solution was for me to take Premarin to start my periods. no such luck. They made me so angry ,I could have hurt my own children . I quit taking them and that was that. One day I was cleaning the gutters and my abdomin started to hurt and I had a fever. I have a bad back ao I figured that was what it was. I went to the doctor a few days later and he sent me for an US. They found a 9cm mass and a mass in the uterus. They got it all and there was nothing in the omentum or any organs. i went thru 6 chemo rounds over 4.5 months and lost my hair but kept my life.Fair exchange. The hair has grown back and so far so good. I wish the rest of you luck and good health.

work like you don't need the money...love like you've never been hurt...dance like nobody's watching!! .•*´¨ ) ¸.•*¨) -:¦:-
(¸.•´(•*¨. ♥.•*¨)
{¸.•´+*+CAROL+*+*+{¸ ;.• .•*¨}.•* .**+*
CHAPS in use: Visually impaired and MENOPAUSAL. You do not want to mess with this!


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RAWSUZN's Photo RAWSUZN Posts: 5,407
6/23/08 3:41 P

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That's the strange thing about cancer. It doesn't make us feel sick until it's in its last stages. Now is a good time to take a good look at your diet and lifestyle and see if there are ways you can build up your immune system to keep the cancer at bay. My cancer diagnosis was a complete surprise to me too. A routine colonoscopy was what detected it. Unfortunately, it had invaded the lymph nodes; so they wanted me to undergo chemo. The surgery had produced clear margins, however, so I opted to wait and see.
Su

Edited by: RAWSUZN at: 6/23/2008 (15:40)
The more difficult your health challenge, the more wisdom you will gain by overcoming it.
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6/23/08 12:33 P

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I went in for a routine physical in Sept 2007, and my doctor said since it had been four years since my mammogram...time for another!

I had one in Feb, got called in for another screening in March, and got a little "huh" when they took me back for an ultrasound.

I had a biopsy in April and was diagnosed with Invasive Ductal Carcinoma on May 6.

My lumpectomy was June 12, my lymph nodes are clear, and I'm scheduled for a second lumpectomy on Thu because my surgeon did not get clear margins on the second lesion.

I have a wonderful family and my friends and co-workers have been great. The surreal thing for me is that I DON'T FEEL SICK! So how can I have cancer?

Edited by: IVYLASS at: 6/23/2008 (12:32)
One stumble does not a failure make.

Everything in moderation.


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6/23/08 11:50 A

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Tell us your story here. When were you diagnosed? What kind of treatment did you have or are you undergoing. How are you doing now. What kind of support are you looking for.
Su

The more difficult your health challenge, the more wisdom you will gain by overcoming it.
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