Well, it's not going to kill you

No but it's going to piss the living hell out of me.

This assault upon women's healthcare.  Of course you need to take into account that this public health studies were begun under the Bush administration so there was probably no science or scientists involved.

However now that the crackpots in the House and Senate have their bribed little hands on our health I'm feeling a bit wary.

Jen asked in a comment on the post I wrote about her and the 3 day walk "what should we do?"  Because my focus is breast cancer, duh, I told her to talk to the doc who delivered her kids as a first step.  As an OB/GYN he or she is the perfect place to start.  Lot's of tumors get found by OB/GYN's.  I suggested that she find out if there is a digital mammogram machine in her community, if there's not one in San Diego we're all in big trouble.  I suggested all of you start rabble rousing in your communities and raising funds for digital mammo machines.  NOT digitized films mind you a digital MACHINE and along with that a dedicated radiologist to read the films.  No more what ever radiologists hands the digital pictures happen to land in that day.  We deserve and should demand nothing less.

Don't be intimidated if you're told that can't be done, especially you Kaiser people.  Yes it can and the Sutter NorthBay Women's Breast Care Center is living proof.  It's not easy, it took us 10 years but it got done and we can now say with pride that we have the best equipment available with literally the country's best radiologist to read them.  Our ultrasound machines come from a place the sounds like "WE".  "We" sends it's people to our radiologist to learn what can be done with their machines.

If any of you are interested in more info please feel free to email me.  If I can't answer your question I can certainly find someone who can as my personal doc is also director of the Center.

Fellow women, we need to unite and make it very clear we will no longer be pushed around.  WE have voices and we can raise them very loud if we choose too.

I shall now remove myself from my soapbox for the evening.

We now return to our main story

When I had arrived the night before he told me surgery was scheduled the next day (Sat 9/5)  My sister Jan and I arrive at the hospital at 10 am to find out that surgery is scheduled for 1pm.  Ok it's a wait but not bad for Kaiser.  Jan and I head out to the cafeteria (NEVER, EVER eat in the cafeteria at Oakland Kaiser, just take my word for it)  We arrive back at Larry's room at 12:30 and he's gone.  A wonderful (one of the few) case managers sees us looking blank outside the door and he offers to take us down in the staff elevator and locate Larry.

The usual pre-op stuff is going on, the anesthesiologist asks if we eaten, yes, his reply was I hope not downstairs!  The surgeon, an amazing man comes and explains what he's planning to do which is remove the ball from the socket, clean it up,  clean up the socket, repair the socket, reinsert the ball and voila.  He's also going to try to do the knee at the same time depending on how the hip goes.  The hip does not cooperate with the plan.  The ball is riddled with arthritis and the socket is much more badly damaged than expected.  It could be repaired to an extent but Larry would need a hip replacement in a couple of years.  So total hip replacement it is.  The knee didn't get done.

Jan had gone out earlier to get us some provisions in case we got hungry - we're mostly on the same wave length food wise salami sandwiches on sourdough and red whips.  We had been told the Piedmont Ave was only a block away but it could be another country.

We finally get to see Larry about 7pm.  He's telling me that he sees mice moving on the ceiling and he's in a pod in a warehouse and he could be alone or there could be dozens of other pods there.  Ok, this brings back to many memories of the last time he was in the hospital.  I ask him what his name is.  He smiles at me and replies Benjamin Franklin.  I said (rather sharply I gather) don't you start with me.  He immediately said my name is Larry Carey, I am in Kaiser Oakland Hospital and it's 2009.  Jan tells me later she's NEVER heard me talk to him like that.

By this time it's about 8 pm and I send Jan home after swearing an oath in blood that I would take a taxi to my hotel that is an entire block away.  I stayed with him until 11:30 more to reassure myself that he's really not in an altered state but also to help him touch the "ground" again. 

The next morning I call and he says he's really in a bad mood, he'd rather be alone.  I said great because I'm exhausted and I'm going back to bed.  I read a bit then slept until 5 pm. He's still not feeling social but I'm hungry so I wander over to Piedmont to get something to eat.  In the meantime he has found out that knee surgery is scheduled for the next day (9/8)  probably for sometime in the late afternoon.  Jan and I confer.  I plan to arrive at the hospital at 11 am.  Jan will leave work in Sunnyvale at 2:30.  Surgery starts out being scheduled at 6, then 7, then 7:30, he finally leaves for OR at 8 pm.  The surgeon says he's supposed to say this surgery will take 2 hours but he knows it will really take 3 to 3  1/2.  Again an outstanding anesthesiologist and OR nurse.   He happens to be from Jamaica and tells us we MUST go there because their are many, many Carey's in Jamaica.  Works for me!

I don't usually like to leave the hospital while Larry is in OR but Jan and I were starving at this point so we head back to Piedmont Ave for some food.  We get back and then begins the wait.  It was about the same time as the wait Sunday but seemed so much longer because it was dark and the hospital was quiet.  The surgeon finally comes to talk to us, I told him he looked as exhausted as I felt.  The knee went great so now we're in a holding pattern to get him stable and into rehab.  I'd had the good sense to talk to the charge nurse the first day I got there and made it clear I wanted him transferred some place closer to home, and I reminded the charge nurse EVERY DAY.

By Wednesday it's clear Larry is stable, fine and grumpy.  I decide it's time to go home. Thursday I get a call saying he's being moved but giving me no information.  Friday they called and said he's being transferred to Sebastopol ( about 40 minutes away)  YES!  Once again the Kaiser dance began.  Transport was coming at noon - great I'd be able to spend SOME time of our anniversary with him, transport was coming at 2, transport arrived at 2:30 which meant he didn't get to Apple Valley until almost 5.  I'd promised FWF that I would be there but it's about 1 1/2 hours from Sebastopol to Cloverdale.  So we talked on our anniversary - our 10th anniversary we just talked.  Well at least he's alive.  I was planning to see him yesterday but fear of the fires moving stopped me.  I FINALLY got to see him today.  He was sitting in the hallway when I came through the front doors and his face lit up like a Christmas tree.  Talk about having a boost to your ego!

We still don't know what the plan is except that he cannot put any weight on his left foot for 3 months.  At this point knowing he's safe, well and in a good nursing home let's me go with the flow.  Apple Valley is nice, clean, relatively current furnishing and the staff I've met are wonderful.  I cannot tell you how that eases my mind.

Thus ends the current installment of Larry and the flying Gator.  I'll keep you all posted.

This is getting out of hand.

Will someone PLEASE make the Dugars stop,  baby 19 on the way.  Oh and their son & daughter-in-law who have only been married a few months are expecting as well.  Maybe they'll have a contest to see who can pump out more babies.

Yes babies are beautiful, cuddly, adorable little people and the world is lucky to have them but these "we'll let God decide how many babies we have" people are just selfish and irresponsible.  God gave you a brain and she expects you to use it, like the people who invented birth control - they used the brains they were given so the rest of society could benefit.

There is severe overcrowding on out planet as it is.  People are starving to death every day, children dying of disease now unknown in our country.  These Quiverfull people seem not to understand or care that every extra baby they have takes away resources from another child who desperately needs it.

And the message they send is that women are just broodmares just popping one baby out after another.  How do you make time to give a single child the love and attention he or she needs when they're one of a herd?  How do you teach them to be an individual in their own right?How do you teach them that women are more than baby factories?  That they're not automatically the one who does the dishes or the laundry or the grocery shopping?  How do you teach them to respect women as human beings?

I could go on but I won't because I'll really get to ranting and none of us need that.  Besides I think I did a similar rant when they annouced #18.  These things bother me.

Batshit crazy

Seriously. What is up with the Republican party and their wing nut idea that a new health care plan is just a plot to kill old people?

Who put what in their Kool-Aid?  When these rumors starting floating around, i.e. the woman in a town hall meeting telling Obama that she heard there was a clause in the bill that government people were going to knock on every senior citizens door and ask them how they wanted to die, I thought it was kind of funny.

When Rush Limbaugh and Glenn Beck were ranting, raving and generally making fools of themselves it was funny.  But now actual members of Congress for example Virginia Foxx, R, N.C.  are standing on the floor of Congress and announcing that the whole idea of health care reform is to kill off old people it's ceased to be funny.There's a big difference between a living will, which is a good thing to have by the way and everyone should, and deciding how old people are going to die.

Someone needs to slap these people upside the head and say get a grip.

Stats

I check my stats often via sitemeter.  I have an average of 14 people per day hit my site.  Clearly most of them don't read what I have to say but some do.  I often wonder if it's because they're my friends - thank you Erin, Connie & Nicki.  Or if it's people looking for breast cancer information.  As you can see I'm transitioning away from spending a lot of time on breast cancer.  I'll never abandon it because it will ALWAYS be a part of me now.  

But I'm trying to add other information because I want patients and survivors to realize that you need to move on.  I can hardly be the "spokesperson" for moving on considering the difficult time I've had and am still having.  But I am getting better, slowly, slowly, painfully getting better.

One of the things I suggest is that as soon as you're diagnosed find a therapist.  You may have to do some serious hunting to find the right person for you.  Just don't be stupid like I was and wait until you're scaring yourself and the people around you.  Until you are seriously thinking about killing yourself (forget suicide it's way to tame a word) or checking into a mental hospital.

It's hard suddenly going from a patient having all kinds of support to being a survivor. Does any one even know what it really means to be a survivor?  Because let me tell you lack of disease does not make you a survivor.  Your body has survived but your mind still has to deal with all the trauma that goes with being a having had all this treatment.

Walking into your oncologist's office (at least in CA) and seeing the sign that chemicals in this building may kill you - well duh.  Getting stuck with needles, getting pumped full of drugs.  Some that you may be allergic to - oh that was fun.

Can you tell that I went to an Advisory Council meeting today???

OK has anyone seen the Bristol Palin interview?

The one with Greta Van Susteren ( of the truly bad plastic surgery Greta)  When Mom, yes the one and only Sarah Palin pops in?

Poor Bristol, not only does she look absolutely overwhelmed being a teen mother, as she's trying to explain that it was not the best choice and if she had it to do over again she wouldn't.  Good ole Sarah pops in, funny full makeup and in a suit when she was supposed to be outside playing the the other kids.  They show pictures of the littlest Palin baby and Sarah's baby sharing a baby seat as if it's the most wonderful thing ever.  "Grandma" is so happy that her youngest child and her only grandchild are so close in age.  They can be real buds!

Bristol looks trapped, uummm well she is, and just barely got out that abstinence only is NOT equal to birth control when the wicked witch of the north swoops in.  That poor kid.  17  and her life is virtually over.  Unless she can break away from TWWofN, get some scholarships and single mom support life is going to be boring, unenlightened and endlessly tedious for her.

But then I got my gratefulness.org messageGreat compassion is the root of all forms of worship.

His Holiness the Dalai Lama

And then I thought it anyone deserves compassion it's this poor young woman.  She made a decision that no 17 year old should have to make, granted she didn't have much of a choice considering her mother's politics but it appears she's trying to make the best of it.  I haven't heard anything about college scholarships, it seems I've heard she's a great basketball player.  University of Alaska the top Division II team in the country might pick her up, baby and all and offer her a chance to make her way in the REAL world.

So i'm offering my compassion and prayers to Bristol caught in her mother's web, hoping that things will look up for her soon.

On Therapy

If you are coming to this site because you have just  or recently been diagnosed PLEASE LISTEN (ok READ) CAREFULLY.  In retrospect I wish I had started seeing Dr. Sanity (my therapist) when I was first diagnosed.  I think that life would have proved to be a bit less traumatic during the  2 surgeries, chemo, radiation, ruptured bowel and subsequent emergency surgery and recovery, PET/CT scan and all the myriad things that you have to go through.  Also if you need chemo I STRONGLY recommend getting a port.  It's minor surgery and keeps you from getting stuck in the veins ( mine happen to be small and rolly) every time you need blood work or your chemo.

I was blessed to already have been a member of the Community Advisory Council for the Breast Care Center for a few years before I was diagnosed.  I had a biopsy on Friday and my doc was on the phone Sat. morning.  She'd already arranged appts with the nurse navigator and gotten in touch with the surgeon.  It was like falling into the arms of your family.

Things would not have piled up until I had a  break down in Amy's waiting room, again in her exam room, was put suicide watch and hard core drugs. 

You will find wonderful support from your docs, the nurses, the techs and your friends when you are diagnosed.  Beware it may take time for your friends to come around, but they will and they will stay through side effects, shaving your head, hearing you moan about losing your hair, and more moaning about losing your hair, you name it, they will be there.

But once you're done with treatment all of a sudden all those medical people are not there.  Your friends will still be there they just might be a bit confused for a while, they'll get over it.  You're done, you're cured, you're expected to go on as if nothing happened to you.  However your life has changed forever. Follow up doc appts, more frequent mammograms.  Possibly even ultrasounds, MRI or PET/CT scans.  It all depends on your type of cancer and how advanced it is.  And always that tiny fear of recurrence that lurks in the back of your mind.

YOU NEED SOMEONE IMPARTIAL AND SAFE THAT YOU CAN TALK TO.  SOMEONE WHO CAN HELP YOU LEARN HOW TO MAKE THE TRANSITION FROM PATIENT TO SURVIVOR - TRUST ME ON THIS.

I didn't do it and now I'm paying the price.  I'm  not going to go back and make the links, there are far to many.  You can read my archives.

OMG Poor Dr. Sanity I cannot shut my brain down. It's like a train wreck where both the engineer and brakeman have bailed and the train is either going to crash or run off the tracks.

She likens it to taming a herd of wild beasts

Just take my advise and have someones arms you can fall into while you recover emotionally.  I'd also recommend starting a blog or diary.  It helps you get things out of your mind and onto "paper".  If you're like me you obsess.  It also gives you a place where you can record the questions you want to discuss with your various docs.  All of a sudden you'll find you have a hoard of them.  My advice is to pick out one as the point person.  Run all questions through him/her it's much easier that way.  You have one person who knows the whole picture.  I choose my regular doc as she is very well versed in breast cancer.  I could ask her to translate the doctor speak I got from the surgeon, medical oncologist, radiation oncologist and send questions back the same way.

Talk about banging your head against the wall

I've been (re)searching the last couple of hours for information on transitioning from a breast cancer patient to a survivor.  Because as you have clearly noticed over the last few months it is NOT an easy or automatic thing.  

There's lots of information about chemo brain and fatigue but I haven't been able to come up with an really good information on the emotional recovery.  It's very frustrating, both not finding information and going through the emotional recovery.

My friend Nancy threw herself full force into getting the Breast Care Center into existence.  She made a movie, climbed a mountain, rode a motorcycle.  Breast cancer was her life.  She has the skills that made it work for her.  Alas, they are not part of my skill set.

I'm still struggling every day with how to become my new self.  Thankfully I have Dr. Sanity, Dr. Drug and Amy to help me along the way.

I just found this article, informative as it actually acknowledged the problem.  I find many publications only go as far as surgery/chemo/radiation aspects of recovery.

From the article "...The survivorship experience is dynamic, changing over time, with particular moments of stress being transitions, such as the transition from treatment to long-term follow-up. ..."  Ya Think????

"... Major depression and depressive symptoms occur frequently in cancer patients (Massie, 2004). ..."  No, really?

BOX 3-2
Psychosocial Concerns of Cancer Survivors

Negative

• Fear of recurrence, concerns about future and death

• Depression, sadness

• Inability to make plans

• Adjustment to physical compromise, health worries, sense of loss for what might have been (e.g., loss of fertility)

• Uncertainty and heightened sense of vulnerability

• Alterations in social support

• Fears regarding accomplishment of adult developmental tasks

• Existential and spiritual issues

• Psychosocial reorientation

• Sexuality, fertility, and intimate relationships

• Parenting

• Employment and insurance problems

• Relationship with the treatment team

Positive

• Feelings of gratitude and good fortune

• Sense of self-esteem and mastery

SOURCE: Ganz (2002c).

I feel as if the authors took up residence inside my brain.  I'm going off to do some more searching now.  This is a really important piece of my life right now.  I'd like to be able to use my feelings and fears to help other survivors if I can.

Prop 8 - things are gonna get ugly!

I'm sure most of you have heard about CA prop 8, the same sex marriage ban amendment to the CA constitition.  It won, apparantly a lot of people in my beloved state care more about how chickens are housed than they do in equal rights.

There are marches around the country and you can find a list of people who donated to the passage of this dark ages amendment here.  It heartens me the number of people from the North Bay area that donated to oppose the amendment.  Southern Ca particularly Orange Co is a hot bed of Republicans so donations from there don't surprise me that much.  It does however dishearten me to see the number of contributions from christian  groups.  Is this the kind of Christanity we want in our world.  People who feel it's perfectly fine to deny other people their civil rights just because they don't agree with their lifestyles?  Ummm, let's see?  NO!  

I'm taking a run through the list to see if any businesses I support made donations and then I plan to boycott them.  Note:  How ironic is it that Aaron Vonasek of Choices Transition Services donated $500 or that Allan Christensen of The Empowerment Team donated $100?  But the big question comes when you find someone who works at a business makes a donation, not the business?  

Do you boycott Apple (that would be a VERY hard one in this house what with the imac and the ipod staring me in the face at the moment, and the laptop sitting patiently on the floor next to me) or Columbia Pictures or Merrill Lynch (wait are they still in business?), the State of California, The Four Seasons Hotel, or Atlantic Pacific Bank based right here in Sonoma County?  And perhaps you may want to reconsider having Art Hollingsworth's agency in Rohnert Park handle your insurance.  What if you're a same sex couple and have a claim?  Are you going to get the same level of service as a heterosexual couple?  Just asking?

I'm also surprised to see the number of government employees that donated to support prop 8.  Is that even legal?  I suppose it is, just because they are employed by a government agency they're donating as a individual.  And why would Antioch Convalescent Hospital care if same sex marriage is legal?

In the meantime you can go to this site and sign the petition to repeal prop. 8

For the record I'm not gay/lesbian and Larry and I have been together for almost 23 years, married for 9.  I'm just pissed that some of the people I love are not allowed to marry the people they love.   Also none of these records are private they came via the LA Times and google searches.  For the people who opposed the measure on the basis that "IT" would be taught in schools?  Well you're right.  It will now be taught in schools as a civics lesson.  So while you're gloating over your win give that a thought.

to be continued because as I said, I'M PISSED

It's finally here

The big day, the day we've been both dreading and hoping for.  Yep it's election day.

I greatly care who you vote for but the main thing is to get out there and vote.

I have a button on my coat that reads VOTE or shut up.  That's my opinion.  If you don't bother to exercise your very valuable right to vote you have no right to complain about the direction the country is heading.

My strategy for today, to keep myself from getting today obsessed is cooking.  I bought 20 lbs of tomatoes last weekend and plan on turning them into soup, pasta sauce, ragu and short ribs.

So let's keep all our appendages crossed in the hope that Obama wins tonight because I don't know how I'll be able to get out of bed tomorrow if McCain wins.