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Medical Forum / Diseases and Disorders / Breast Cancer / November 2006Kili's journal
Some of you may remember Kili, who early this year was struggling to diagnose her symptoms. Her journal, http://www.caringbridge.org/visit/kilikini, details her journey to this point. She is due to have very extensive surgery shortly and has been diagnosed with another ailment which will also require very extensive treatment. A lot on her plate! Lois She is so lucky not to have breast cancer, it is very rare for someone to die from her diseases, Fibromatosis and a genetic liver disorder called Hemochromatosis. Hopefully she can have treatment and move on with her life. > Some of you may remember Kili, who early this year was struggling to > diagnose her symptoms. Her journal, [quoted text clipped - 4 lines] > > Lois > She is so lucky not to have breast cancer, it is very rare for someone to > die from her diseases, Fibromatosis and a genetic liver disorder called > Hemochromatosis. Hopefully she can have treatment and move on with her life. Think this sounds like a picnic? and they don't know yet if they're doing the surgery. She may have damage to her liver, pancreas and heart from the previously undiagnosed hemochromatosis The surgeons just found out, so don't know if they'll proceed or not. She's waiting for them to call her and while she's waiting the tumor continues to grow. Lucky????? J Basically, the oncologists, radiologists, surgeons and specialists I've seen tell me that they've never run across a case like mine and it's going to take some radical surgery to get my tumor out. The tumor is wrapped up in the connective tissue between my ribs and is almost reaching my heart. Because it's almost to my heart and lungs, they do not want to have me go through radiation for fear that radiation could damage my heart and lungs. What they're thinking they may do (but they're still conferring and they'll know more after more tests next week) is that they will remove my sternum, three ribs, my left breast and the muscle on my left chest side. Since that would leave me with a rather large hole in my chest that would expose my heart, they want to remove my lower two abdominal muscles from the "6-pack", place a strip of surgical gauze over the gap, and lay the removed muscles over the gauze. It's totally scary, but there isn't another alternative at this time. So, yeah, it sucks. Honestly, I'm really upset. I will only have one breast and I can not get a prosthesis. If I could get an implant, I wouldn't care as much, but implants go under the muscle and rest on the ribcage - I won't have a ribcage. Secondly, since I will have no ribcage, there will be nothing there to protect my heart and lungs. A blow to my chest can kill me. I'm dreading this, I'm scared, I'll have a zipper scar from above my *breast* down around to the bottom of where it should be. > She is so lucky not to have breast cancer, it is very rare for someone to > die from her diseases, Fibromatosis and a genetic liver disorder called > Hemochromatosis. Hopefully she can have treatment and move on with her > life. Did you read it all? J excerpted some relevant parts; in addition her liver disorder is serious - the treatment being dialysis for the rest of her life or a transplant. I thought there were few things worse than 'classic' breast cancer, but her case proves me wrong. I don't think she is 'lucky' for one minute and feel very sorry for this young woman to be afflicted like this in the prime of her life. Lois > .... I thought there were few things worse than 'classic' > breast cancer..... ----------- Alzheimer's is worse. Lou Gehrig's disease is worse. Eva >> .... I thought there were few things worse than 'classic' >> breast cancer..... > ----------- > Alzheimer's is worse. Lou Gehrig's disease is worse. > Eva Among the 'few things' that are worse that I had in mind, were ALS (Lou Gehrig's disease) and pancreatic cancer. According to a specialist in ALS, the most painful deaths were due to these two diseases. Sadly, in the end he contracted ALS. Alzheimer's is dreadful of course, but is it painful? (Just asking, I don't know that much about it.) Lois >>> .... I thought there were few things worse than 'classic' >>> breast cancer..... [quoted text clipped - 9 lines] > > Lois No, but it can be anywhere from very distressing to quite blissful, just the luck of the draw I suppose. But it's always distressing to the carers, as is any long-term debilitating disease. Which would be worse, a short painful death or a protracted dying in moderate pain and total dependency? I'm not sure I know the answer to that, but I could certainly see long term sleep deprivation as a pretty severe torture. May the fates offer me neither! Tim >>>> .... I thought there were few things worse than 'classic' >>>> breast cancer..... [quoted text clipped - 18 lines] > that, but I could certainly see long term sleep deprivation as a pretty > severe torture. The calculus of relative human misery is complex -- too complex to pin down, if you ask me. Having breast cancer stinks. But "worst that happens to one" is subjective -- my "worst" probably wouldn't be your "worst". IMO, having a wrangle with BC & living to die from something else is quite far from the worst that could happen. I say that because I don't think it's the worst thing that ever happened to me, and I haven't even lived long enough to die of something else yet <g>, and have had a pretty darn soft and easy life in most respects besides. And when you get out to ALS vs. pancreatic cancer? Is that better or worse than having your family caught up in Darfur? Better or worse than extensive 3rd degree burns? Jeesh! My heart goes out to anyone in any of these circumstances. It doesn't seem like there's any way to, or any point in, trying to put them in "misery order"!? Ann T. Remove 'dontsendspam' from address to reply by email > Having breast cancer stinks. But "worst that happens to one" is > subjective -- my "worst" probably wouldn't be your "worst". The discussion has strayed from the original point I was trying to make. Here are some excerpts from Kili's journal. "He confirmed, by a diagram, that he is going to remove about 4 ribs, part of my sternum, my left breast and strip my left side of my chest muscle in order to get to the tumor and try to eradicate it. ... Dr. TerKonda will close up the hole in my chest with a type of surgical gauze and then remove my lower two abdominal muscles to replace the chest muscles that will be removed by Dr. Odell...... He also wants someone to take care of me to watch for bleeding, infection and there is a possibility that my body will reject the surgical gauze....." Then for her liver disease: "When my cancer is cured or eradicated, I'll go through a procedure called phlebotomy, where the doctors will bleed my system once a week (kind of like dialysis) for the rest of my life to remove the iron toxins. If the "bleeding" still proves to be ineffective, I'm a prime candidate for a liver transplant..." She will not be able to use her arms for awhile, even to type on a computer and may be convalescing for at least a year and will need home health care for 5 weeks. IMO that is worse than any breast cancer operation I've ever heard of. I was driving a week after my mastectomy. Lois . >>>> .... I thought there were few things worse than 'classic' >>>> breast cancer..... [quoted text clipped - 13 lines] > the luck of the draw I suppose. But it's always distressing to the > carers, as is any long-term debilitating disease. > Which would be worse, a short painful death or a protracted dying in > moderate pain and total dependency? I'm not sure I know the answer to > that, but I could certainly see long term sleep deprivation as a pretty > severe torture. Is sleep deprivation a feature of Alzheimer's? > May the fates offer me neither! Indeed! My mother-in-law simply lay down to take a nap and quietly passed away. For a lucky few it can be blessedly simple. Lois >> Which would be worse, a short painful death or a protracted dying in >> moderate pain and total dependency? I'm not sure I know the answer to >> that, but I could certainly see long term sleep deprivation as a pretty >> severe torture. > > Is sleep deprivation a feature of Alzheimer's? No, it's a feature of chronic pain. I was talking about the other side of the coin. Regarding Alzheimer's, a friend's mother had it and seemed blissfully unaware that there was any problem, and was quite sure that Cary Grant had just been to visit her. On the other hand, my father had vascular dementia, which is not dissimilar, and was fully aware of his condition, and frustrated that he was unable to do things he used to do, to participate in conversation, to keep track of what was going on. I have heard of similar descriptions by Alzheimer's patients. Tim Lois wrote: > Indeed! My mother-in-law simply lay down to take a nap and quietly passed > away. For a lucky few it can be blessedly simple. My father-in-law was dx with pancreatic cancer two years ago - it had already metastasized to his pleural cavity when they found it (that's *how* they found it). Dr. Smiley gave him three months, told him to get his affairs in order and started him on Gemzar. He got better. A *lot* better. He lasted a year and passed from a massive heart attack while putting his pajamas on to get ready for bed. To hear the paramedics tell it he was dead before he hit the ground. He'd been to a party that day to celebrate a friend's 50th anniversary and other than being a little cranky all day had a pretty darned normal day. I don't know how the rest of you feel about being blessed, but he got nine extra months and was spared a painful death. I think sometimes the gifts we receive can be kind of harsh gifts, but my father-in-law's passing reaffirmed my faith that a lot of the time the right thing just happens as long as we continue to do the right thing. > She is so lucky not to have breast cancer, it is very rare for someone to > die from her diseases, Fibromatosis and a genetic liver disorder called [quoted text clipped - 9 lines] >> >> Lois May I also add: I have concluded that the only positive to being struck by cancer is to make one a bit more sensitive to the suffering of others. But that lesson is apparently totally lost on you. Lois I think a snow job when I hear one, This is a breast cancer support group, the woman has a flair for drama. I don't wish her any harm but what are we suppose to offer her. We don't share a common diagnosis. >> She is so lucky not to have breast cancer, it is very rare for someone to >> die from her diseases, Fibromatosis and a genetic liver disorder called [quoted text clipped - 15 lines] > > Lois Hemochromatosis- from NIH. Treatment is simple, inexpensive, and safe. The first step is to rid the body of excess iron. The process is called phlebotomy, which means removing blood the same way it is drawn from donors at blood banks. Depending on how severe the iron overload is, a pint of blood will be taken once or twice a week for several months to a year, and occasionally longer. Blood ferritin levels will be tested periodically to monitor iron levels. The goal is to bring blood ferritin levels to the low end of normal and keep them there. Depending on the lab, that means 25 to 50 micrograms of ferritin per liter of serum. Depending on the amount of iron overload at diagnosis, reaching normal levels can take many phlebotomies. I don't know where Liver tranplants and dialysis is coming from, I do know if she was that severe her surgery would be suspended indefinitely and she would be in the hospital. Ribs and Sternum removal- done all the time for other surgeries. Ribs usually grow back and many people live without a sternum. Her surgery does sound major, I wish her the best, I would still trade a breast cancer diagnosis for her "Major conditions", with proper treatment she should be able to get back into the prime of her life and get a job with insurance ( some don't have pre-existing clauses) so she can maintain her good health. >> She is so lucky not to have breast cancer, it is very rare for someone to >> die from her diseases, Fibromatosis and a genetic liver disorder called [quoted text clipped - 15 lines] > > Lois > Some of you may remember Kili, who early this year was struggling to > diagnose her symptoms. Her journal, [quoted text clipped - 4 lines] > > Lois A lot, indeed. I would not want to have to go through what Kili is going through. My breast cancer, even the rib mets are much easier to bear than her problems. Wishing you all the best possible with your surgery Kili. Nana >Some of you may remember Kili, who early this year was struggling to >diagnose her symptoms. Her journal, >http://www.caringbridge.org/visit/kilikini, details her journey to this >point. She is due to have very extensive surgery shortly and has been >diagnosed with another ailment which will also require very extensive >treatment. A lot on her plate! Yes, I remember her. I remember how difficult it seemed to be to get a diagnosis and how long it was taking. Thank God they've finally made a dagnosis. My God, what a terrible time she's having. The surgery sounds very invasive and extremely scary. Please send her my commiserations and best wishes for a good outcome, or as good as it's possible to be without ribs. I can't imagine what that would be like, except that I'll bet it causes a lot of difficulties I've never even thought of. Geraldine > Some of you may remember Kili <snip> > Lois Hi Lois, Has Kili found any online resources for Fibromatosis - also known as Desmoid tumors? There are a couple of newsgroups: http://groups.yahoo.com/group/desmoidtumoursurvivors http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=desmoid&A=1 and there's a special site at http://www.dtrf.org/ Regards, Peter - had a desmoid (fibromatosis) tumor removed last November. >> Some of you may remember Kili > <snip> [quoted text clipped - 13 lines] > > Peter - had a desmoid (fibromatosis) tumor removed last November. Thanks Peter. I forwarded your message to her and I trust everything went well you. Lois |
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