Starting Chemo May 2008

Jen,

It's possible that you won't be disappointed.  Ask for pictures of his or her  worst outcome.  Ask to  speak to women he or she has worked on.   Remember there are no stupid questions and you are auditioning this person to be your medical employee.  (Sorry I am a bit rabid on this subject)...

Love you and hope you get everything you want,

Sue

Good morning! 

I am also thankful for EVERYTHING!  I am thankful that I read a study (during chemo) about BC patients and the importance of being in a support group.  That document led me to 20 of the most amazing, strong, beautiful, funny, inspiring and caring women - whom I feel blessed to call my dear friends. 

I am thankful to have had the opportunity to meet Jen for lunch - it was awesome!!!  I got out of my car and saw her across the parking lot - knew it was her instantly!  It was easy to spot that glowing smile and the beautiful curly hair (so jealous of that hair)!  We talked and laughed for hours.  Jen - I hope the PS appointment goes well. 

I am thankful that my Dad is home from the hospital and is doing well . . . it certainly made for an interesting week. 

It is a beautiful fall day here and I am headed out for a run . . .  which I am also thankful for. 

Love to each of you!

Jean

eddie's rain lament

reads almost as if it is

Haiku, doesn't it?

otter 

Mom's seven siblings.

All but one has had cancer.

Until yesterday.

It was a haiku. My godmother (who is also BRCA2+) has been diagnosed with uterine cancer.  As Mom is fond of pointing out, "Well, you gotta die of something. And cancer is not exactly a surprise in our family.  It's just a surprise she didn't develop it until now."  But still. The news is hard to take.

it has been quite a couple days.

uncle (mom's brother) is having two more surgeries this week for skin cancer.

dear, dear friend (we went to brazil together) went in for 2 hour procedure to have some skin cancer removed and it wound up being a 10 hour procedure requiring a skin graft. 

my godmother/aunt (mom's sister) has been diagnosed with uterine cancer.

And then I am in touch with a friend of a friend who was just diagnosed. But I am quite happy for that. Any chance I have to tell people about bco, well, that's easy.

none of this is the end of the world. it is all just a bit MUCH. What is really bothering me is that i am supposed to video-skype with my family this weekend as they celebrate mom and dad's 50th anniversary and dad's 80th birthday.  frankly, though, I COULD NOT CARE LESS. I just DO NOT CARE. I am trying to care because I know it will mean a lot to them but frankly, it is just bringing up some less-than-flattering feelings I have about my family. Glad and grateful for the support that they did offer; acutely aware that they physically turned up after the show was over.   I mean, for crissakes, They had TEN FULL MONTHS to put in an appearance.  (My younger sister would have if I had asked her to come for chemo. We decided together that she would come post-chemo, pre-rads.  But she lives in ALASKA.  And my older sister DID come in December and was very very very helpful to me in packing up my apartment.)  I know they cared. I know they continue to care.  But I am struggling to care about them caring.

With no disrespect for those of you with tight, loving families. I am so glad that works for you.  But all this family and family values stuff. It is absolute SHITE as far as I'm concerned.

There is something about me having to do this whole skype-video thing (my computer with teh sound card is acting up) that really sticks in the ol' craw.  If it is so blasted important that people lay eyes on me THEN WHY DIDN'T THEY SHOW UP FOR THE REAL SHOW LAST YEAR???? I really don't feel like throwing my healthy, tanned, hair-ed head in front of a camera with Table Mountain as a backdrop so everyone can be so happy that "She looks great!".  WHERE WERE YOU WHEN I LOOKED AND FELT LIKE A FREAK. WHERE WERE YOU WHEN I WAS AFRAID??

And my parents and their whole attitude of "Well, this family gets cancer. It is just what happens" so thoroughly pisses me off.  They don't actually say "Therefore you should quit complaining about getting it..." but that's what I feel they are saying.

I don't want to see them. I don't want them to see me.  But I know that I really do have to make the effort.  Because they are my parents and I love them and they are not getting any younger.  But seeing my family  (if I can figure out the whole Skype thing-- I really don't know what the computer problem is)... it is going to be a bit much.  And not because I wish I were there. But because I am so very glad I'm not.

* * * * * * * 

You may now resume your regularly scheduled programming. I want to say that I am sorry for throwing all my sh*t out there, but to be honest, I'm not. What I am is deeply deeply grateful for you guys.  And you don't have to respond. You really don't.  I know we care about each other.  (But if there is any part of this that you can relate to.... I would welcome the empathy.)

I feel much better now, to be honest. I didn't realize how much the whole thing was bothering me until This Very Moment.  Thank you. And if I haven't said how much I love you all, individually and collectively, well, I do. I really do.

Rock - I feel you.  You know I do. 

Kristy - I have my own RN experience as well.  DH is one and after about 3 days of (anyone's) illness, he is done.

I am still in awe of how much we as a group are in sync..I haven't come here in a long time to vent (except for shovel people) but today is that day.  And here's Rock and Kristy...sigh (in a good way).  I love you all. 

I turned on my cell on the way home from work tonight and there was a voicemail from the center that does all my scans.  They were calling to schedule a PET scan.  I have no knowledge of this maybe because I ALREADY HAD ONE about 5-6 weeks ago which I was told was clear.  I have had blood work done in the last 2 weeks but with no reported results.  I actually haven't really worried about it.  Unitl tonight.  But what struck me was the instantaneous  and absolute panic and fear that set in.  "What do they know that I don't?"  "Why hasn't anyone called me?"  "What the HELL is going on??"

I managed to call my best friend to talk me down.  Not only is she my best friend, but she is also no stranger to cancer and gives me the perfect balance of support plus reality check.  Her thought is that it was just a "clerical error" (someone didn't realize I have already had it) which then pissed us both off.  She said, "I just don't think they realize the havoc they cause with a seeminly innocuous message."  We're considering doing an in-service "sensitivity" training (I'm serious). 

So I'm holding the "clerical error" explanation until I can call in the morning because mad as hell is better than scared to death.  I will post Part 2 tomorrow...

Rock I am sorry you are having grief over this skype get together.  Sometimes family members like to bury their heads in the sand to protect themselves when the going gets rough , oblivious that  this is the time when you need them the most , Then pop there heads out when it is safe again.   I am sad that your family wasn't present for you to lean on and hold you up when needed.      

. Good luck with the skype decision and whatever you decide brings you peace...you deserve it . Hey maybe you won't be able to get your computer to work the skype thing anyways and that will solve the problem And if you do decide to do it a nice glass of wine before might help to ease the tension.....then after the call you can finish the rest !!  Sending hugs your way..

Cristine i am sorry you got that phone message and am hoping it was just an error like you said. In doctors and medical practices their should be some message protocol so they don't leave messages like that and cause unessecary grief ! Please let us know what is going on.

Eddie I hope that liver stuff you mentioned on Facebook is just that ......stuff and nothing more. Thinking clear followup scans for you !  Keep us posted.

Hugs for all of you going through STUFF !

FIrst CT scan ever....today. About an hour ago. Drank dye, injected dye into the spot where they drew blood Monday morning. Ouch but whatever. Good, compassionate staff people as I am scared because my routine three month check is turning into a scary dream and I hope it's not a nightmare. My onc called to say my liver (which has always done well on blood tests) did not pass. So, scan they did. Will post as soon as I know. I am enjoying reading the rants though I am sad we are having to rant...

Time to post my "I'm thankful" list: at the very top, I'm thankful that Eddie's liver is clear (check out her FB status, and I'm sure she'll be by here shortly, but not before - I hope - she has a long, peaceful night's sleep) and that Cris's call was just the result of a berserk scheduler. 

Speaking of berserk schedulers, I'm also thankful for shovels.  And for women who know how to use them.

I'm thankful for apricot sunrises streaked with slate gray.  I'm thankful I live near a lake, and can look south (!) and see Canada.  I'm thankful for morning runs, no matter how slow.

I'm thankful that Eric has stood by me even though we'd been together barely a year when I was diagnosed.

I'm thankful that my daughter is a good writer, even though I can't get her to clean her room.

I'm thankful for every one of you.

Linda

Sigh. I love you all and am thankful we are planning to meet soon. WIll write more soon and am celebrating the day. I just had a brownie for Adrienne who told my friend, Dottie, to eat one for her and I ate it instead which is bad cause I am wearing leggings and a sweater dress today, but c'est la vie. Back to work for now.

Finally, I can take a breath and check in even though it is on work time. Rock, I am so sorry you have been having to deal with all that is happening all at once. DO you think someone is pulling strings sometimes or sending "adventures" or "challenges"? Do you think there is a master schedule somewhere for how much crap someone has to have all at once ..... like maybe some can deal with more than their share? I send you hugs and strength (as if you need that, but I guess we all do sometimes.)

Christine, of course it was a clerical error, but still!!! I wish each of you had the opportunity to get the care we each deserve. The one thing about this whole liver thing this week is that my oncologist called on Tuesday evening at 8:30 to tell me he was concerned (he always calls in the evening so that didn't freak me out. What freaked me out was that I was sure he was calling to yell that I wasn't taking enough Vitamin D). I had the CT scan on Wednesday and the people were amazing. I had my results delivered by the doc himself (no clerical errors there) that evening by 9 PM. He called my home and our son gave him my cell and he called to give the all clear. Everyone should not have to deal with this crap, but when we do, one lost night sleep is enough. I am thankful I got good news within some 25 hours. I wish all of our cancers had been "clerical errors" and "misreads" and that none of us would have to adjust to being under a microscope forever and "living with cancer."

I notice no one is weighing in on the new mamogram recs. I am interested in what many of you are feeling. I, myself, having been diagnosed at 47 after finding the lump myself am at a bit of a loss. I have read what everyone is saying and I am normally someone who believes that less intrusiveness is better and that less stress for women is better, but I know so many who were diagnosed way before 50. I would not have known I was "high risk" until after I was diagnosed as none of my cousins came forward until after I told them I had breast cancer. I think the weridest part of all this is the way they decided that one in 1900 wasn't worth the trouble but one in 1300 was... so odd. Anyway, every once in a while, I do start thinking about what if this is all a hoax and what if we are all just playing in to big business and a weird medical web. I get a little "Twilight Zone" about it then pull myself back and tell myself I am alive because of early detection, etc. Weigh in women. Speaking of weighing in, I plateaued a long while after losing 12 pounds and now gained two back. The doc tells me now that I have started this very exciting purple pill thyroid stuff, I will lose weight quicker when I work out (which I have been doing religiously) and when eating right (the chocolate seems to be the problem here). We have invited my friend, Jeff, to Thanksgiving in our home. He is our 12th. He has pancreatic cancer and has been given a few months. He can come if none of the rest of us are sick. I have alerted everyone to to a self check on turkey day morning and see if there are any scratch throats, running noes, etc. I am thrilled he is coming. We also have a dear family coming (kids are similar ages to ours, etc plus, bonus, they are bringing their 80-something mom to hang with my mom) and my boss who is delightful, pithy, interesting (he worked for the Kennedy family and for the Edwards campaign) and Australian (which adds a good accent, Kerry). What about the rest of you? Take care andI hope to write more between now and Thanksgiving....love you all.

On the USPSTF's new mammogram guidelines . . . I'm ambivalent, but believe it or not, I'm leaning toward thinking they make sense.  Which is weird, I know, considering that I was diagnosed at age 46 by a routine screening mammogram.  The thought of having waited another year, or two, or three or four, makes me queasy.  But at the same time - here comes that ambivalence! - maybe nothing would have been different, and I'd have been diagnosed at the same stage as I was, and I would have got to hang onto my left breast a little longer.  (Though I would surely have screamed bloody murder, and been sure that if I'd just been screened earlier, I'd have been caught at Stage 0 or 1.)  We don't know, do we?  Which sucks.  And means we're stuck with a whole bunch of studies, some of them better than others, pointing in different directions - and some of those directions point away from our individual experience, which makes us angry or queasy as the case may be.

Whatever: it's clear to me that mammograms pretty much suck as a screening tool for pre-menopausal women.  They throw out a lot of false positives - leading not just to anxiety, but also to invasive procedures . . . and a shocking proportion of breast biopsies are excisional, not needle biopsies . . . with the attendant risks.  They also generate a lot of false negatives.  Screening doesn't work so well for all those women who get regular mammograms and are *still* diagnosed at Stage 3 or 4.  (My own cancer was found more or less by accident - it was some incidental mammogram findings that led to my diagnosis.  I suspect it had been there for years, unseen on annual mammogram after annual mammogram.)  

I guess one response to the false negative issue would be to screen even more aggressively - start younger, do more frequently (why just once a year? why not every six months?).  But that's going to increase the number of false positives.  And there's also the non-trivial matter of exposure to radiation from all those imaging procedures.  So at some point, you draw a line.  Which is always going to be arbitrary.  I mean, we can all agree that full-body CT scans every 3 months starting at age 25 for the entire population would be a bad idea (even though they would undoubtedly pick up a few early cancers here and there, and those people would feel strongly that screening had saved their lives).  We can all agree that colonoscopies at age 50 are a good idea.  In between, there's a whole lot of gray.  And I do think that mammograms for pre-menopausal women fall into that gray area.

What I like about the USPSTF recommendations (at least as I understand them) is that they call for a more individualized approach.  Instead of *routine* screening mammograms for *all* women age 40-49, the decision of whether or not to be screened is something to be discussed between a woman and her doctor.  That makes sense to me.  If you have risk factors (not just family history, but things like early menarche, late childbearing, alcohol use, etc.), then the decision might tilt toward an annual mammogram.  But turning annual mammograms into a civic duty for women in their 40s (OK, I'm being a little sarcastic) is probably (there's that ambivalence/uncertainty again!) not an effective way to lower breast cancer's toll. 

Whew!  Like many of us, I've been obsessing over this whole controversy.  It's really good to have a friendly place to come to try to make sense of both the science and my own feelings.  Hope everyone has a wonderful weekend.

Linda

Linda, I really like what you said in your post.  You are feeling the same ambivalence I feel, but you've been able to express it clearly; and all I can do is grumble and growl.

I guess one thing that bothers me about the USPSTF guidelines is that 3 of their 6 recommendations were "grade I".  That means there was insufficient evidence to make a recommendation one way or the other.  That's what they said about clinical breast exams, effectiveness of "new" imaging techniques (digital mammo, MRI), and using mammograms to screen women older than 75. They said, "We don't know, because there haven't been enough good clinical studies on this".  I think it's kind of pathetic that, after all these years, nobody knows if clinical breast exams do any good.  And, I know of several papers that documented a benefit of digital mammograms over film mammograms in women in their 40's; but the USPSTF decided there wasn't enough data.  I thought the evidence supporting some of the other 3 recommendations wasn't all that strong, either.  But, why isn't there enough good data showing a benefit of self-exams, when so many of us found our tumors that way?  Apparently, one reason is because tumors are often way too big by the time they're palpable; so finding them by self-exam doesn't save all that many lives.  (I think I need some chocolate now.)

All that "insufficient evidence" stuff became more relevant when I saw a report from a different govermental review panel today.  It came from a Medicare review board that was evaluating evidence for and against the methods used to diagnose and treat lymphedema.  Like the USPSTF, the Medicare panel had another, outside group do a "comprehensive review" of the medical literature on diagnosis and treatment of LE.  Then the Medicare panel looked at the other group's report and made some recommendations.  The outside group only considered evidence from "high-quality" studies on LE diagnosis or treatment:  randomized, controlled clinical trials; and they only evaluated papers that were written in English.  Those criteria resulted in much of the medical literature on diagnosis and treatment of LE being thrown out, and lots of questions remaining unanswered because of "insufficient evidence."  Is that a good thing?  I don't know.  Even the scientist in me doesn't know.  "Evidence-based medicine" doesn't require that everything be based on randomized, controlled trials.

[I just posted a whole page about the Breast Cancer Action BC screening guidelines; and then I erased it.  I'm spending way too much time agonizing about whether we are being fair to the people on the USPSTF, who weren't asked to write policy -- they were asked to make recommendations based on two actuarial (statistical) reports commissioned from other groups. Or, maybe the USPSTF members were as ignorant as they seem.  Should they have allowed emotion and personal anecdotes to change their judgments about the evidence in those reports?  If a comparison between two screening strategies was found to be "highly significant', should they have said it wasn't, because they knew how unpopular the recommendation woud be?  Or, if they found "no significant difference" between two strategies, should they have said there was a difference, and one method was better than the other, because they knew they would get angry phone calls and emails if they didn't?  I hate that science and politcal policy and healthcare decision-making have become so intermingled.]

Oh. sorry.  I guess I just can't help it.  I need to walk out to the mailbox and get the mail.  I think I have some dark chocolate M&M's in the freezer....

otter 

I have ambivalence as well...hmmm. Good night for now.