support groups
someone had referred us to social services (i don't know who), so there was a very chipper social worker spending time with us this afternoon. it was pretty helpful i guess, but slightly intrusive...if we've gotten by with just the two of us so far, who's to say that we can't keep up like this?
(and i must admit that writing here has been a bit of a catharsis)
the one thing that we were interested in, she didn't know if it existed. we're interested in a support group for cancer patients in their twenties and thirties. i've (unsuccessfully) looked on the web for such a group. all of the groups that i've found so far are for parents of young blood cancer patients, and for older people.
has anyone heard of such a group? if so, please post it in comments.
down
hubby was disconnected from all the monitors today and sent down to the 2east wing (his usual floor),
where everyone knows our names.
and he got out of bed for the first time in 3 days. yippee!
up
hubby had a blood infection, with some funky organism that the docs can't quite identify yet. the antibiotics are doing their job, and he is doing much better. he might get moved down to his usual unit tomorrow.
no other insights tonight, i've had a hell of a weekend and am going to cuddle with my kitty now...
kitty up close. (this is how he looks when you cuddle with him.)
back in hospital
hubby was admitted to the e.r. yesterday when he went in for a routine transfusion. he's now at critical care unit for
neutropenic sepsis.
they have him connected to many machines that go "ping."
tonight's topic, or something else for me to irrationally obsess over
so bushie and pals reformed bankruptcy laws this week, with the help of their good friends in the credit card lobby. in an attempt to curb the growing number of chapter 7 bankruptcies filed each year (1.5 million, according to a recent harvard study), the new laws make it much harder and more expensive to gain protection from one's creditors. supporters of the bill stated that the purpose was simply to reinstate some of the stigma associated with declaring personal bankruptcy.
there is nothing wrong with forcing joe schmo who charges his new plasma television to pay up. however, the "irresponsible spenders" that congress is going after are a small minority of those who declare bankruptcy. according to newsweek, "95 percent of those who declare personal bankruptcy are swamped by job loss, family breakup, medical problems, or some combination. For about half, it's the health-care costs that do them in." and the new bankruptcy reform laws make no distinction between someone who blows his loot on unneccessary material items and someone who gets cancer.
the harvard study lends strong factual support to the need for healthcare reform in this country. the majority of the study's subjects were middle-class, property-owning, who started their illness with health insurance. and they were still driven so far into debt that when many of them made the decision to declare chapter 7, they had no assets at all to liquidate.
but of course, we have to uphold the stigma that was once attached to being financially ruined. too damn bad if you're ruined because the united states healthcare system failed you. you're just a deadbeat, as much as the guy with that porsche he got but can't make payments on.
or so says bushie and congress.
sources:
jonathan alter newsweek columnharvard school of medicine bankruptcy study
and now for something completely different
this is one of my favorite pictures.
guess what it is.
help, my brain's exploding
hubby and i are ordinarily very easy-going folks. the first two months of his relapse went as well as can be expected, with both of us maintaining a semblance of a good attitude and outlook on things.
now, for some reason, i am going completely insane. and i think that hubby's attitude is suffering from my sudden break from reality.
we found out last week that we are most likely moving to the d.c. area at the end of next month (one of the plusses of being a fed is that they can move you to a job closer to family if you need it). good news, especially compiled with hubby's early release from the hospital last week, right?
ever since this weekend, my mind has constantly been spinning up doomsday scenarios affecting nearly every facet of my life. for example:
1) there will be a person with an exotic disease on one of our flights, which hubby will catch b/c of having a low immune system, hence creating more complications;
2) our cat (who is like our child) will get lost en route (thanks hubby for putting that one in my head)
3) my new supervisors will think that i'm a slacker and using hubby's illness as an excuse to miss work
4) we won't like hubby's new oncologist; or won't be able to find a bone marrow match for the transplant, or any number of things that could go wrong with his treatment...
it is as if my sensible and optimistic side has suddenly jumped ship. and hubby's feeling low now 'cause of his treatments, so now we are both rotten.
bah.
home
hubby came home on saturday, about a week earlier than planned, due to him responding so well to the treatment. so far, the only side effect present is blistering on his skin, which is small potatoes compared to what could be happening.
the at-home drug list for this round:
gleevec
mepron
zovirax
diflucan
and something else that i can't remember right now. but we have quite a collection of pill bottles.
gleevec is the tricky one, as it's at-home chemo. the rest are maintenance drugs. according to the
website, tylenol plus gleevec is a no-no, but his doc told him that it was ok to take tylenol, since it's a painkiller that is less likely than others to interact. does anyone have any light to shed on tylenol + gleevec?
stem cell research
in the interest of this being a site where one talks about cancer, instead of about one's own daily occurances, tonight's topic is stem cell research.
stem cells are undifferentiated cells that can eventually become just about any type of cell found in the human body. because of this flexibility of purpose, and modern science's ability to "tweak" these cells into whatever form necessary, stem cells are thought of as a potential treatment to some diseases, including diabetes, leukemia, and many other types of cancer.
the current administration's policy on stem cell research, which was voted into existence in 2001, has limited american medical research firms' ability to conduct experiments. these experiments could mean new and more effective treatment cycles for thousands of men, women and children who are affected by cancers. most notably, less-restricted stem cell research could vastly improve the treatment and survival rates for many types of leukemia, since the cancer originates from abnormal stem cells that turn into "blast" cells, or leukemic blood cells, instead of normal white cells.
the current policy allows federal funding for umbilical and adult stem cells, but withholds funding for fetal stem-cell lines produced after 2001. there are ethical concerns when dealing with the stem cells of unborn children, and i am not trying to argue against a well-regulated and accountable system for making these cell lines available for research. a donor program could assist cancer research by making voluntary donations of fetal tissue possible when the tissue is a result of a miscarriage or a byproduct of the fertility industry.
how can our current administration support "a culture of life" when they deny so many the possibility of improved treatment for terminal illnesses?
Read more here:
childhood leukemia rates up 30 % in the past 20 years.stem cells effective treatment for many aggressive leukemias.congress is trying to find loopholes to expand federal funding for stem cell research. conservative republicans are mad.sign a petition to support more federal funding of stem cell research here.
a relatively uneventful day...
hubby had his first spinal tap today since his relapse. after they were done, he couldn't move his back for a while. nothing like helping your hubby pee in a jug to build that extra-special marital closeness.
Britney announces she's preggers
And there is yet another reason why people should have to take a test and get a license to bear kids.
Before I get labeled as a "h8er," or whatever mtv is calling it these days, let me just say that there is supreme irony in the fact that someone who single-handedly brought back "lolita"-style sexualization of youth can have a family with her gold-digging, baby-mama deserting husband.
And hubby and I can't. Or we could try, but we might end up with a "Chang and Eng" style kid due to all of the residuals from the chemo.
If you don't know who Chang and Eng are, click
here.
long day's night
the first night that i have to leave him at the hospital is always the hardest.
nurse (who is waaaaaaaaaay too chipper) left us with a sheaf of papers the size of a short novel bearing descriptions of all of the drugs he will be receiving, with lovely side effects printed on them like "will likely cause mouth sores," and my personal favorite, "do not attempt to conceive children while taking this medication." though admittedly, the thought of what may happen to our unborn child has been a source of humor for us (flippers!? a tail!? webbed toes!? the possibilities are really only limited by one's imagination).
yummy hospital vittles
hubby will be in hospital for two weeks starting tomorrow for inpatient chemotherapy. so, we lived it up today, having good food for all of our meals today, going for a walk and shopping just for the hell of it. it's gonna be a struggle to keep his spirits high for so long of a stay...
me and hubby
Welcome
Hello there...I was recently searching the web and was sort of shocked by the lack of "everyday person" cancer websites. So this is my attempt to fill the void a bit. Please check back often and feel free to comment about whatever comments you wish. The only rule that I have is this: CancerTalk is going to be a supportive and welcoming place, and NO FLAMES OR TRASHTALKING will be permitted.
Thanks and good night,
Amanda
