Last post Sat, May 10 2008 4:56 PM by Debbie. 9 replies.
Welcome to the new Cancer Survivors forum! We'd love to hear stories from the cancer survivors on Disaboom, so join the fray--start posting your questions, answers and stories.
Good question Tim. I'm a Stage III Large B-Cell Non-Hodgkin's Lymphoma survivor of three years, whew! What a mouthful eh? The tumor I had was in my right lower abdomen/groin and was wrapped around and intertwined with the blood vessels supplying blood to my lower leg. They had to remove the whole works and then they did a blood vessel bypass. This didn't supply enough blood to my lower leg and, after my first chemo, my leg started to go bad.
A month after my initial surgery, I had my leg amputated. It really was a relief to see it go. It was really ugly, I won't go into detail here, and it caused me such terrible pain. I did well after the surgery, but I had a spot that would not heal. My doctor poled around to debride it and then, 36 hours later, I had a fever of 103 degrees. He put me in the hospital, but he didn't give me a strong enough dose of antibiotics. I ended up at home a week later with the right dose of antibiotics, but the damage had been done. I got low grade fevers, had these for a month, and then they did surgery to remove the dead tissue. No MRSA yet though. Same thing happened again, they did a second surgery and then found MRSA. I had to have two more revision surgeries to close the wound.
I finally got my temporary prosthesis two days short of a year from my amputation. After going through a wear schedule, I finally got to walk a few weeks later. Yesss!!!!! I hated that temporary prosthesis though, No ankle movement whatsoever. I was so pissed to see an amputee with a carbon fiber foot about six months after I had my temporary. It was very strong and didn't move much, but it would have been better than what I had. Anyway, I got my permanent pros in October of 2006 and was on my way. All told, I spent 15 months in a hospital bed in my living room with my husband and sons taking care of me. The cancer was, relatively, the easy part, compared to the leg problems I had.
No one knows what you have to go through when you get cancer, unless you get it yourself or someone you know does. All the tests, blood and radiological, the ports, the blood transfusions (I had 14), the medications you have to take besides the chemo, the shots for your white count and your red count, bone marrow biopsies, PET scans, doctor visits and the hours spent getting chemo. My chemo sessions took at least six hours every three weeks. Then, there's the nausea, vomiting, weakness, memory loss (chemo brain, I call it), lethargy, depression, anger, denial, people who don't know what to say to you, so they say nothing, on and on. I'm a nurse and even I didn't realize all the things people have to go through. You have to go through it though, and you have to keep your chin up. The only thing you can do is take it one day at a time. You have to get strong, so you can fight for your life, Three years in remission for me, yeah! Only two more to go. I wish it wasn't such a long time to be considered cured, but it's a fight you have to fight and you can't give up, ever!
Now I'm a member of the American Cancer Society on the web and whenever there is an issue to deal with, I send e-mails and letters to my congressmen. I also send out Notes to Neighbors for donations. This will be my fourth Relay for Life coming up in June, and I walk around the track as many times as I can. I also sell luminary bags for the event. I am also a member of the Amputee Coalition of America and fight for amputee rights and rights of the disabled. I feel good about being able to do this for myself and others.
Good luck to all of you who have had cancer touch your lives. Hang in there.
I too am a cancer survivor. I have scleroderma, the illness caused small intestinal paralysis (total obstipation), and it is theorized that this is the reason I developed the cancer which eventually metasticized to 16 locations in my body. I ended up in hospice, but it seems it was not my time to go as treatment described in my blogs resulted in my eventually becoming cancer free, and have been so for over a decade. I still have the scleroderma with paralyzed intestines, COPD, muscle spasticity, reflux, balance problems, fibro,and use a wheelchair for most mobility. Still, I count myself lucky, and am happy to say that, YES, I am a cancer survivor. It can be tough, but it is possible to survive.
Hi, I'm Brian from Pennsylvania. I'm a four-time cancer survivor, mostly of osteogenic sarcomas (bone cancers). I was diagnosed at age 5 with bone cancer just above my left knee, resulting in amputation and about 14-16 months (can't recall exactly how many) of chemo. I was in the clear until I was 20, when I had a huge amount of swelling in my right (good) hip. It was expected to be just a hematoma, or swelling of some sort from banging my hip hard between falling and playing sports, but it turned out to be a massive network of blood/fluids going to a new tumor. They took that out, and I alternated for the next year and a half between chemo and more sugeries. After the third surgery, when the tumor came back again as a "cluster bomb" of small tumors in the same location, the docs told me the odds were looking very grim...they wouldn't dare give me a survival percentage, since the surgeries and treatment weren't stopping it from coming back more aggressively each time. I ended up telling the docs to go ahead with one more surgery, and if they couldn't get the tumors without taking my hip/pelvis, then they should just stop there and I'd just accept whatever happens. It turned out the tumors went right down to the hip bone area, but barely avoided infiltrating the area. It was a long recovery, but I'm able to walk pretty well to this day after all that major surgery there.
I was in the clear for another few years before having a two small tumors in my upper right arm, which resembled fat tissue lumps, but were low-grade sarcomas. That one was a quick 3-month or so recovery before I was done with treatment and surgeries. But about 2 years after that, I ended up with colon cancer, which had started to spread to my liver and other areas, before chemo treatments knocked it back. I had a couple more major surgeries for that one, and more chemo and radiation (yeah, I should glow in the dark at this point! :). I'm proud to say that it's been 5 years since completing treatment for the colon cancer. It hasn't been an easy journey, but I've definitely come through it all with stronger faith and enjoyment of life.
Brian
Survivor here.
My husband is going through kind of the same thing except in reverse. We spent 3 months going to doctors & about 15 antibotics. Then I finally talked him into going to the hosptial to be admitted (sometimes I think he blames me for all of this), after 3 months of fighting to keep his leg (home & mostly in the hosptial) he finally lost it on March 31,2008. April 10,2008 we found out he had cutanionuas B type cancer. He is having server phantom pain in his leg & we are still going for test on his cancer. He has to have a bone marrow test & a lymph node removed to be tested. He is so depressed from the pain & still having to go through more testing. I'm as supportive as I know to be & will not let him give up. At times it is really hard & I don't know what to do or say. I try to get him involved in things but he does'nt always cooperate & fights me. We keep one of our grandchildren & even she can't get him out of bed some days. If you have any suggetions on things that I could get him involed in or questions that I should ask his doctors I would be so very grateful. You can IM me if that would be easier.
Thanks to everyone who has responded so far--some incredible stories. I'm sure more people will begin to post here as time goes on.
i have cancer presently this is my second bout with it, my sister has had it twice and my mother has has it also-
it is not easy to get out of bed sometimes I have found a place called Gilda's Club founded by Gilda Radner- if you have one there look it up Please that is where you need to go- they help tremendously socailly support groups and a place just to get away- for the family of cancer and the cancer members themselves it is entirely FREE- also call the American Cancer Society they can help with transportation to doctors and pain meds if needed this has helped a lot. Sitting I foound only makes it worse i know i am going through it know and have gone through it before- i give myself some pity time then i get up and get moving - i write poetry - I am legally blind so i can only listen to the tv but at least it is something to do and gets my mind temporarily off my problems. I wish him the best of luck and if i can say anything to help please let me know - By the way this is the first Post I have done on here I am a NEWBIE
To all survivors, way to go! My thoughts and prayers are with all of you. I'll have to check out the Gilda site. I just loved her. My girlfriend gave me a talking birthday card with Gilda as "Roseanne Rosanadana" and the battery is starting to go because I have played it so much. She was a sweet lady. Hang in there all of you!
Becky
