Wednesday, April 28, 2010

another day

No appetite. Am having to force food down. No nausea just nothing looks or taste good. Well, am on a bland diet which is well, bland. Hard to get excited. Took a good walk this morning. Energy is way down as to be expected during day 5-10 on chemo. But, the walk helped. Bowels are moving but not violently. Goal is to keep it that way. Will see how the rumbling in my tummy progresses.

Tuesday, April 27, 2010

I'm back...

From the hospital! Saturday night I needed to poop. Took a Colace like they told me to so I could go in the morning. No go, just bad stomach ache. So I move on to milk of magnesia which is what they told me to do. No go, just worse stomach ache. I'm desperate. Used glycerin suppositories twice in attempt to move the bowels. No success no I'm just in plain old pain. I'm beyond desperate now. Dad goes and gets a fleet enema. Ok use the enema, the pain oh the pain I'm sitting on the pot, arms wrapped around my mother's waist yelling for mercy and finally finally the cannon ball drops, followed immediately by violent diarrhea turbo charging out my butt. I swear if I hadn't been holding onto my mother I would have flown off the toilet seat with the impact. How can one go from being constipated beyond belief to diarrhea in an instant is beyond me but apparently common in the chemo world. In the hospital the nurses said oh the cork popped. Now I'm taking Imodium to try to stop the diarrhea and vomiting is setting in. Time to call the doctor. Doctor on call tells me to try to take the anti nausea meds and sip small amounts of water. I can't keep down the pills. I throw in the towel and said that's it take me to Hoag.

Hoag is a beautiful place if you have to be in a hospital. The oncology ward knows what the hell they are doing. ER had things under control shortly and then they told me I was checking in. Fine with me. Now in my humble opinion this is just how your first round of chemo should go.You should just be checked into the hospital. Sure I get it, its not cost effective but damn it they just don't know how you are going to respond the first time. You don't know. You don't know if you are going too far or far enough. Its all a mystery and quite frankly well it still is. They have the nausea thing under wraps I'll tell you that but, this whole bowel thing not so much. Each person you talk to will tell you do to something different. Well, crap. Literally. So you have to maintain your bowels through this thing as if you have just eaten something bad and you don't know how its going to hit you. That's how I'm thinking of it.

So I have three more chemos to go. I feel really good about the fact that if I go to Hoag they can get it under control.

It was an emotional experience. The ER doctor was a big burly guy and he leans over me and asks what kind of cancer do you have? I say breast cancer and he says oh my wife was diagnosed two 1/2 years ago. I grabbed him said I'm so sorry and blubbered all over the guy. I imagine he was thinking oops wrong thing to say.

The oncology ward, that was tough. Shit, I didn't even feel like I belonged there. There were just people in bad shape. I was having trouble with my chemo, they were not going home any time soon. My dad and I spent time walking the halls and crying.

Staff was great, just remember when you are in the hospital to leave you modestly at home. Mine was no where to be found and beware in future because I have completely lost it. And it amused the hell out of me how one minute the nurses were trying to give me a sense of modesty by giving two gowns go wear, one to cover my front and one to cover the back and the next moment they were just opening the door to the bathroom and sticking their heads in you ok? Made me laugh, yea I'm ok just shitting.

Home now. Oh a bath felt so good. I go to the doctors on Friday and well, tomorrow is another day.

Love to all.

Saturday, April 24, 2010

TMI

But I know there are those out there who like to really know the details. These are the chemo drugs they are giving me Cytoxan (Cyclophophamide) got 1000mg and Taxotere (Docetaxel) 120mg. Cytoxan disrupts the cancer cells and kills it, Taxotere also does this plus damages the cancer structurally. Taxotere comes from the mesquite tree bark. Then they harvested it from the European mesquite tree needles. Now they have a synthetic form. Its 33% more effective than the chemo it replaced and more tolerated. Now that's pretty amazing something that works better and isn't as hard on you. Other drugs Zofran for nausea, working have none so far. Ativan nice anti anxiety, anti nausea go night night drug. Works nice at night. Prisolec for acid. Neulasta shot given yesterday. She said I would have bone pain about 4 hours after injection. Slight but nothing noticeable enough that I needed any Advil. Slept fine. Looked the drug up and the bone pain happens 57% of the time so its not a for sure thing. So we were prepared but so far nothing bad.

Dad was wondering if they had given me the right stuff since things have been quiet. I told him Dr. Barth said with the chemo regime I'm getting nausea happens less than 5% of the time and they don't want you getting nauseous. I'm following all eating instructions and medication instructions.

This first round is suppose to be a pretty good indicator of how my next three will do. So I know what to do to keep things quiet. I'm feeling good about that. What will increase during treatment is fatigue. I will be getting more and more fatigued as this goes along. I think that's a combo of physical (poison being pumped into you) and emotional.

Friday, April 23, 2010

Brief intermission

Ok it was a brief intermission because I realized I do need to update with what's next? I have an appointment next Friday the 30th with the physician assistant. It will be day eight of chemo and she will be checking to see how I'm doing. Then I'm scheduled for round 2 of chemo May 13th. As long as everything goes well I shouldn't have to go more than that the next two weeks. We will see.
Some one said Dr. Barth would want to see me before I started each round but, I don't have an appointment with him yet. Oh that might happen next week.
Well I'm getting sleepy so I think I'll take a snooze for a while.

Intermission

We interrupt the chemo news with some entertaining ads brought to you by my dad.
Enjoy:


Tic toc tic toc

I feel like a fucking time bomb. This first round of chemo is just one big anticipation. You are told this could happen or this or that do this do that blah blah blah. But, no one knows for sure how you are going to react because its different for everyone. So far stomach has been quiet. Been eating bland stuff and taking my anti nausea meds on time. Screw that as needed shit I'm not even going there. Just got back from getting my nulestra (sp?) shot. This stimulates the bone marrow to make blood cells. I will get bone pain. How much? who knows. Dad is out to get the Advil. Now physician assistant said take three not two but, three you'll need three. Ok. Talked to Rachel my chemo nurse who so far has not steered me wrong and she said oh well three is prescription strength try two and then if you need three take three. So I'm thinking maybe its not so bad. She said today (as she gave me the shot) you look fantastic are you sure I gave you chemo yesterday!

I've taken so many pills today if I roll over I'll sound like a rain stick. And I'm not done. Ativan tonight. Maybe some xanax if this anxiety gets much higher. And then of course the Advil for whenever the body aches start.

Holy Hell just broke out down stairs. Sounds like Buttons (my mom and dad chihuahua) is about to take off someone's ankle. Not sure what happened. I guess she didn't want to go outside.

Well Crap

Been taking my steroids wrong. Thought she told me to take one in the morning and one in the late afternoon. The day before, of and after chemo. Today I actually read the bottle and it says to take 2 pills twice a day. Oops. I called the doctors office and the nurse said yea take two. Well, today is my last day of taking them until the next round. So, I took another one and will take two this afternoon. The steroids are to prevent reactions and to make you feel better. I'm doing pretty good so far so maybe taking 2 will be better.

Hanna's cake aka



My dad birthday cake. Oh man I had forgotten it was my dad's birthday, the day I shaved my head until about 9pm. Then I called him oh dad I forgot your birthday. And he says yea and it's not like you don't have anything else on your mind and I'm crushed you forgot. And I say yea and on your birthday you got to watch your daughter shave her head. And he says You know I did think that was a rather strange present. I said But, there was cake! He says yea but no candles. So we have a date when I'm up to it to go to the hat shop that I love and we get new hats. The two of us.

And here is Hanna's beautiful cake she made me!

Unveiling of the Head pictures









Chemo first round

Yesterday was a long day. First chemo cocktail took 5 hours. That is because they introduce this stuff to you slllooowwwwllllyyyy the first time in case you have a reaction. If you have a reaction they can stop it and then resume the treatment. Good news is I didn't have a reaction to either drug. My next three round will take about 1 1/2 hours now that the know they can crank it up.

My chemo nurse Rachel. Rocks. I heard her in the nurses station, she shaved her head and she hasn't even started treatment yet! I told them the day before I was going to. She said I was brave. I said not really I didn't want to watch my hair come out in clumps.

So she had a very specific regime for me to follow yesterday and today vs what the physician assistant had told me during my chemo 101. PA had said take as needed for nausea. Rachel nope. She wanted me taking my zofran at 7pm. Did. Take my ativan at bedtime did. Eat and take another zofran first thing in the morning did. She said I would most likely wake up with a crummy stomach and to get something down and take the zofran. Well, I'm pushing fluid which mean forcing water down. Yesterday was peeing ever 30 minutes. Only symptom I had yesterday was mild acid reflex. And it was not normal acid reflex because I would drink water and then it would go away for about 30 minutes. Then come back. I decided it was my body's way of telling me to drink more water. Last night I woke up every two hours to pee, would drink more water and eat a couple of crackers. Woke up this morning at 7am. Hungry! Ate 3 of my daddy's fabulous crepes. Took my zofran and am now blogging. Yea Rachel rocks listening to whatever she tells me do to. She wants me on a different anti nausea regime for my next round. She called in the perscription. I couldn't do it this time because you have to take one pill before chemo, on the day of and one the day after. But she really wants me doing that next time. I trust her. This is what she does, takes care of chemo patients everyday.

I go back to Dr. Barth's today at 3:30 for my nuelestra (sp?) shot. This shot will stimulate my bones to make blood cells. This will keep my counts up. Downside will make me achy. Was told to take advil and I think was told to take three. Will confirm that today.

I was a human pin cushion this week. Monday breast needle biopsy for additional tissue-6 pokes, Tuesday nothing done to me, Weds. blood drawn 2 pokes (one failed),Thursday chemo 1 poke (they know the vein to use now) Today one poke hopefully. Total for the week 10. I am so looking forward to this weekend!

Wednesday, April 21, 2010

Chemo tomorrow

So chemo tomorrow at 9:30 am. They had trouble getting blood out of one vein today. That wasn't pleasant but, they found one that worked really well and said they would use that one tomorrow. If they can use it, great go for it. Got meds for a couple of anti nausea meds and one for steriods. The steriods I will be taking the day before, of and day after chemo only. Helps with reaction and nausea. Nausea meds as needed. This chemo that I'm going to have is tolerated well, that's not to say I won't have about five days or so where I feel like I have the flu and the rest of the time be fatigued but, its shouldn't be the retching experience that everyone associated with chemo. And they don't want it to be so if I have trouble I'm suppose to let them know so they can help.

I have some stuff I need to read. Tomorrow after treatment, I'm going to my parents to stay. For how long? I have no idea. Will be taking the lap top with me.

Love to all and will be keeping everyone update on this next leg of the journey.

Bald Momma

Ok well, never thought I would be a bald momma. But, here I am. And I'm amazingly please with my head. I have a rockin shaped head! Bequi did a beautiful job. Miles, Hanna and my dad watched. Now how many kids shave their heads with their dad
watching! Bequi took pictures of the whole process. I can now say that during my life I had a mohawk. For about 20 seconds. I'll post pics when I get them from her.

I think what has taken me by surprise is the immense relief I feel. I had to sit with that and here's the deal. There is so much anticipation with this journey, am I going to like this doctor, what are they going to tell me, what is that test going to show, how am I going to respond to treatment and the list goes on and on. And now that, when exactly is my hair going to fall out, what is that going to look like, at what point should I shave it has been removed, its such a relief and very empowering. The fuzz left on my head fall out, but its no mystery to what I'm going to look like.

And I really like rubbing my hand over my head. Its this texture and sound it makes right now that is amazingly soothing. It just plain feels good.

So, Bequi lovingly shaved it, Miles wanted to touch it and did and Chris, my beautiful Chris, when we got home he looks at me, and I say are you ok? and he says I want to kiss it. And he did.

Goals for the day

Try somehow to leave the house not reeking too badly. Am going to fail because the wrap just stinks.

Try to make my hair look somewhat presentable since I can't wash it. The hat should help with that.

Pack some stuff as after chemo tomorrow, I'm going to go to my parents and stay through the weekend at least. Playing that one by ear depending on how I do.

Go to my chemo 101 consultation.

Get my head buzzed.

Eat cake!

Tuesday, April 20, 2010

Good Laugh

Bequi first shared this with me. Still makes me laugh so hard and in the face of starting chemo, I pulled it up.

Tylenol

To the rescue. Yes, I took the Tylenol at the first sign of discomfort and am comfortable now. Ahhh so who to thank, here it is:

Tylenol [acetaminophen] was discovered by David W. Young, a graduate of Covington Latin School and the University of Kentucky, while working on chemical patents at Standard Oil of Ohio in Cleveland, Ohio. - Wikipedia When acetaminophen was discovered, it was thought to be useless. Therefore, the patent went with no problem to David Young himself (who was an opportunistic patent specialist, not a pharmaceutical scientist) rather than to the University employer. Young later discovered its use and sold the patent to Johnson & Johnson, who marketed the drug as Tylenol in 1955, first to children, then to the widespread marketplace.

Can't leave...

Lil Rev out of the mix! His house concerts at Bequi's have marked some pivotal times in my life. First time he played I was recently separated, second or third time? recovering from gall bladder surgery, next time he comes I should be through my breast cancer treatment. Yes, his concerts have been bright spots during some of my darker moments.


My Passions

Well if you come to my blog you are going to be subjected to my passions. Besides my current passion of breast cancer, one of my passions is the ukulele. As most of you know.

Just wanted to share a bit here. It's long but stick with it around 2:45 the guy will blow your socks off. Enjoy.

Got Hats?

Due to the tube top from hell, I can't do more than a birdie bath. Which means I can't wash my hair. Which means I have to go to chemo 101 tomorrow with dirty hair.

Got hats?

Buzzzzzzzzzz

Oh yes and my Bequi is going to buzz my head tomorrow. Yea I am not going to watch my hair fall out in clumps. Nope. I am not going to let the chemo decide how and when that happens. Its happening tomorrow. God I hope I don't have some weird shaped head. Oh wait that's what the hats are for. Ok. And you lose ALL your hair.

No eyelashes, no eyebrows, no hair anywhere. That's right, look up and look down, none will be found.

Honestly looking forward to that from the neck down, from the neck up well, I got fabulous hats!

Podcast

H. sent me a link to a podcast from Kaiser for surgery. Its guided imagery and they also had one for chemo, fighting cancer, anxiety and a whole list of things. Figured out how to get them on my iphone and just finished listening to them. Oh my these are very very good. I highly recommend passing these on to anyone who you think could benefit and listening for yourself. Especially the affirmations. I think the affirmations apply to everyone. Filling your head with good thoughts, I think is a good thing. Plus I fell asleep while listening, its that soothing.

https://members.kaiserpermanente.org/redirects/listen/

Numbing worn off

Oh man. The first time I had this needle biopsy they only poked the tumor 3 times. 2 cores and then they put a marker on it. Had no sensation after. This time though, they poked it five times. 3 cores, and 2 markers and I don't know what the heck he was doing to get the markers where they belongs and it involved some good shaking or something. Now I wouldn't put it in terms of pain exactly but its uncomfortable. I think I'm going for the Tylenol before it gets to anything that I'm unhappy with. Clue to pain management, treat it before it gets unbearable of its really really hard to get it under control. Yet I've got some Tylenol around here and I grabbing it now.

Back in tube top again

The tube top from hell that is. Had the second needle biopsy done this morning at 11:30am. Different doctor did this one and he proudly tells me that he uses smaller needles so I won't have much bruising. I just looked at him and said are you going to get enough tissue? He says yes Dr. Barth wanted 2 more cores and I'm going to take 3 so there will be an extra core. I said ok but are you going to get enough tissue because Dr. Barth better be happy. He says yes there will be enough tissue. I don't know, I'm not feeling all warm and fuzzy about this smaller needle bullshit and if there isn't enough tissue taken and I have to go back for more I'm going kamikaze on every one's ass. The results (and I'm not even sure what he is testing for) will be back on Thursday. They didn't even know what he is testing for. The doctor said what are these instructions for pathology and the tech says that is what Dr. Guerra (my surgeon) said to put on there. "whatever Dr. Barth wants and if you don't know call Dr. Barth"? She says yes that's what Dr. Guerra said to put on there so that's what I put. They also put two more marker clips in. They had put one in the middle the first time now I have one on each end of the tumor. That's so they can monitor shrinkage and if the darn thing goes away they will know where the original site was so they can remove it.

I'll will be going to Dr. Barth's tomorrow at 2pm for my chemo 101 class. Ok they didn't call it that but basically its my chemo consultation to go over all the side effects, my drugs, get my prescriptions for my anti nausea meds etc. Looks like I'll be starting chemo on Thursday at 10am. They are finalizing my authorizations from my insurance but, its tentatively scheduled for then. They will be tentatively scheduling my future chemo dates which of course can be altered because that really depends on blood counts if you are ready for the next round, thus the eat well, do not lose weight, plenty of sleep and regular exercise through out this things and really beyond.

Will share what I have learn about chemo tomorrow. Stay tuned valuable info to come.

Why am I up?

Because the touch lamp above my head won't turn off. Its plugged into the outlet behind my head board of my stupid plate form bed so I can't reach it. Took it off the wall, I have no idea why, then put it back on the wall. I'm floating like crazy on xanax so I can go to sleep. Just looked up info on the internet that says have to replace the sensor. So, here I am with a light on above my head. But, I have finally come to a solution. I'm going to don an oven mitt and take out the light bulb. Wish my brain had thought of that earlier. Duh.

Monday, April 19, 2010

No call

And I'm ok with that. Mondays in the medical world can be a pain. So, I'll wait. I'm sure I'll hear tomorrow. My dad was upset and I said look its not like they are going to forget about me. It's not like we don't know what's happening next. It's not like we are waiting for test results. They are arranging things and I'm not going to call at this point and upset whatever is going on. He seemed to settle down. Needle biopsy and then start chemo. It's going to happen sooner than later.

Permission

I had someone ask me if it was ok for them to share my blog link with someone who was interested. Yes, please if you know of anyone who could possibly help from the info and experience I'm sharing here feel free to pass along the link.

Today

Today just waiting for my doctors to once again get their ducks in a row and call me.

They are making arrangements and I'm just patiently hanging out. Going to watch some anime with Chris. Will update when I have a schedule.

Stay tune.

Sunday, April 18, 2010

SSSHHHHHH

Do not tell my dad because right now the man has no sense of humor about anything. I feel for him because it just has to be all gloom and doom right now.

But, I realized today that when I lose my hair, that for the first time in my life, I will actually look more like my dad than my mom.

My mom laughed but, we both agreed we shouldn't tell my dad this. He just can't see any sense of humor in any of this. And cancer is not funny but, some of the situations that come out of it, well I just don't know how you can't chuckle.

Hat Crazy








Oh my never thought I would ever spend that much money on some hats. But, damn it I have cancer and it sure beat the hell out of laying on the ground in the fetal position!

I haven't left the house in three weeks except to go to a doctors office so, when finally unleashed I went a bit crazy. Guess it was bound to happen.

Oh but the hats. The beautiful hats. I love them. And I got four. One for each of the four courses of chemo. Of course I will be wearing them more than that and definitely after my hair is all back. These hats are really the life time quality hats. Timeless and beautiful.

Here are pictures of Bequi, Hanna and myself with our new hats. Bequi's new top hat, my new bowler and Hanna's fab fedora!

Saturday, April 17, 2010

I think I found it...



The first time I said stop thinking, just do. I think this was the moment!!!

I was not going to look at all those people



no matter what.

And now.....



We bring you an interruption in breast cancer news. This is still my favorite youtube video. The kid is 5 and doesn't speak English thus the botched lyrics but, I love this. And I don't think he ever did get that booger!

Guess what?

I figured out how to put videos on my blog from Youtube!
Obviously.

No excuse



Now everyone is going to know how to do one. Feel yourselves up ladies!

My surgeon



Youtube rocks. This is my surgeon taking down the US Preventative Services Task Force!

Breast Conservation Surgery



I realized that I said I was going to have breast conservation surgery but, didn't really explain how cool this really is. Ok this is not an lumpectomy. With a lumpectomy they scoop out the tumor and surrounding tissue leaving a divot in the breast, but not removing the whole breast. Not cosmetically pleasing but less invasive than a mastectomy.

Dr. Melvin Silverstein who co founded the first breast cancer center in the U.S. in Van Nuys, Ca. developed and pioneered breast conservation surgery. Dr. Guerra my surgeon did a fellowship at I believe it was USC under him. He then became the head of the breast cancer center at Hoag and he recruiter her (Dr. Guerra) to Hoag. She is his protege and apparently just amazingly talented at this surgery.

The video is safe to watch its just Dr. Silverstein talking no pictures. You also get to see where it all began. This is Hoag's Breast Cancer Center.

Stop thinking just do

Ok I've have read until my eyes bled, thought and analyzed this whole thing to death and now that we have a plan of action. I'm going to stop thinking and just do.

At this point unless I'm presented with something new, I'm not reading anymore. Just makes me grab the xanax. I've made my decision and feel good about it. So now its time to just focus on getting through treatment.

Stop thinking, just do- T-shirt.

Update on Outrage

Ok so you're probably wondering which one. The U.S. Preventive Services Task Force changing recommendations for breast cancer screening.

Well you know me I haven't exactly been quiet about this and have been around tons of medical professional lately and this is what I have learned.

The medical community is scoffing at this recommendation so hard that it has pretty much turned the USPSTF into a laughing stock. No one is taking them seriously. It has damaged their reputation severly to the point...that insurance companies are ignoring this recommendation.

Yea that's how out of whack it is. So for those that felt this confused the issue, be unconfused.

And go get your mammograms!

Solidarity and Support

Ok people I have decided to just address this issue up front and center.

My mom is now wearing scarves in show of support. I have heard on the wind of things from wearing T-shirts to shaving heads.

So I decided it was time to step in and since this is pretty much my show, let you know where I stand on this.

I know you all love me. And you are all going to stand at the outer ring of that fire and cheer me on as I walk through it, you're all willing to toss stuff to me and to shout out directions. But, the reality is I actually have to walk through that fire alone.

Now if anyone wants to wear a scarf, shave their head or wear a T-shirt to relieve that feeling of helplessness and to feel proactive, have at it. Its all good and (ok this is a loud internal dialog that I keep writing and deleting because I know someone is going to take it wrong or feelings are going to get hurt but really I mean this in the most loving way so please take it that way...it frankly has amused the hell out of me).

Now if you want to consider my preferences...what would really show me support is if you get your butt into your doctor and get a mammogram. Commit to monthly self breast examines and if you don't know how to do one, learn, AND this is the biggie, if you do find something be brave enough to get your butt back into the doctors ASAP. Then I can add you to the score card. I would really like to see that number go up. And I want to thank D. for being the first and making that step because I know its a scary one.

Love you all.

Friday, April 16, 2010

UPDATE!

I'll cut to the chase here and then go into details. Good news, there was no additional bad news added to my plate. And actually some good news like an oncologist saying I can cure you and you have a very very good prognosis. Well, you really can't expect more than that. Ok so all breath a sigh of relief.

Now for details:

The PET scan showed the cancer in the tumor only. No where else. And they had scanned my whole body. Very reassuring really to see your whole body and know there isn't anything else wrong with you!

So, no cancer in the lymph nodes from what they can see. This does not rule out that there could be microscopic cancer, but there is only a 15% chance that there is.

The tumor is incapusilated meaning its a nice round tumor and not engaged with anything else, far away from the chest wall and far away from the lymph nodes and well just far away from anything that matters. Its well defined with no tentacles. This is very good.

Further news although it has grown its own blood vessels as cancer tumors are known to do which means it has a high probablility that it is floating around in my system, my cancer does not have these specific receptors. Forgot now what the dr. called them but, think of a tv anttena and there are four genes on it one of them is the HER2neu gene. Not only am I negative for that one but I'm negative for all four. Good news because this means that if the cancer is circulating around its not equipted well to grow somewhere else.

Ok so now for the course of action. We have decided to do neo adjuvant chemo. Which is chemo before surgery. Oncologist was very excited that I was open to this. He had talked to my surgeon and he said I understand you brought this up in conversation. Well, yes I did because it makes sense to me. Here's the deal, traditionally you cut out the tumor and then do chemo and well hope for the best because there is no way to gauge how the chemo is working. By doing chemo first, you have the tumor to watch and see how its responding to chemo. Now this in no way changes prognosis, but, 27% of the time, the tumor will be gone, pathologically completely gone. If this happens they know there is a very slim chance that the cancer will come back. If its not gone, well your prognosis is what it was which in my case is very very good. I'm hoping to land in the 27% because well, you can just breath easier or as the oncologist said you can put that dragon to bed. I didn't say anything but, was amused at the use of dragon! Draw back to this is that there won't be a definite knowledge of lymph node involvement as we won't be biopsying the lymph node since the chemo will kill any microscopic thing in there. Which means they can't actually stage me. Dr. Barth clinically staged me at IIA. But, I asked if this knowledge would alter his course of treatment for me and the answer was no. All actual staging does is gives you a diagnosis of survival rates and since we all know how I feel about those anyway I'm good with forgoing this. For those wondering anyway stage IIA has a 92% survival rate.

The other reason for chemo first is that it will shrink the tumor prior to surgery making it easier for the surgeon to get whatever if anything remaining with nice clean boarders.

So, I'm keeping the girls! Dr. Barth was very straight forward about this. His words I see no reason why you shouldn't have breast conservation surgery and Dr. Guerra is magical with what she is able to do.

I told him I don't want to make a fear based decision about surgery. If removing the whole breast or both is going to vastly improve my diagnosis I'm willing to do that but, I don't want to do that purely out of fear. The man looked at me with so much compassion and said, I admire you and that's smart and brave.

Well, since removing both of them is not going to do a darn thing towards improving my odds against anything why go through all that surgery. By shrinking the tumor the surgery will be less invasive and healing will be quicker.

It just makes sense to me.

So in a nutshell here is the course of action:

1. another needle biopsy, since Dr. Barth won't have the whole tumor from surgery and there are other test he wants to run, I'm willing to do another needle biopsy to get him the tissue he wants. He is going to talk to my surgeon over the weekend and someone will be calling me on Monday.

2. Start chemo (not sure when yet), I will have four rounds once every three weeks. Total of 12 weeks or 3 months.

3. Surgery will happen very quickly after that. Apparently the body bounces back pretty darn quickly from chemo and Dr. Barth assured me there are no additional complications just because you had chemo just before surgery.

4. Radiation. Because I'm having breast conservation surgery I will have 6 weeks of radiation. M-F. But, it only takes minutes and the side effect is sometimes a mild sunburn. Outcome between lumpectomy and radiation vs mastectomy is the same. Have read this for myself everywhere.

5. Possible more chemo, this will depend on many factors but, mainly if the tumor completely disapears or not. If not, more test will be done on the remaining tumor and see if I could benefit from further chemo.

6. Hormone blockers for five years. Pills.

The chemo is going to put me into an early menopause and my periods should stop. Been wondering how I was going to go through menopause now I know! 60% - 70% that will be it. All done. If not I'm suppose to let the Dr. know. Didn't get into big details but its because of the estrogen thing. They don't want me making that because the cancer is feeding off it.

I think that's it. Well, I know its not, I think I was in the office for over 4 hours. He was so excited that he had a patient that had read and could talk to him and understand medical terms and hell use medical terms back at him. This is really this man's life.

And my poor dad. Shit. I still feel bad. They took me back and said Dr. was going to do an examine and then when he was done they would get my family. Well, Dr. Barth came did the examine and then I wanted to see the PET and he pulled it up and we got to talking and looking at the pics and he was explaining and I was taking it all in and asking questions and honestly we both got really absorbed. Then he looks at me and says oh you can get out of that gown and put your clothes on. I'll step out and when your done just open the door. So I do and then when I opened the door I remembered my dad. I said OMG my dad is in the waiting room I need to get him. He looks startled and says go get him. So off I run. There is no one, no one left in the place it had been 2 hours! The poor man was sitting stiff as a board, eyes as big as golf balls. I said dad come on, its ok the PET showed only the tumor we are going to discuss breast surgery. I took ten years off the man's life. He says I thought you were discussing how to remove your liver and your lung and other body parts. Oh man. Two hours of living hell for my dad because I got so engrossed. He totally understands and says its ok. But, do I feel bad for putting him through that. Dr. Barth was great got him caught quickly and then went on to explain more stuff. Dad really likes him and feels good about the course of action we are on.

Much relief tonight. Not out of the woods and still have to walk through the fire but, I feel I dodged some major bullets today.


Now this reconstructive surgery I would consider. I have to give credit to J for the idea!

Not begrudging

Should say here that I'm not begrudging a woman who is attached to the girls. We grow them, use them and become attached to them. I think it is normal to feel a sense of loss when one or both are removed and I'm sure I will. But, from reading and hearing about women who have breast constructive surgery due to breast cancer, there is this tone of yea I had breast cancer but, look at the big boobs I got out of it! Like that's the consulation prize for having breast cancer, bigger non sagging boobs. But, no one talks about the risks of having the reconstructive surgery, the down the line problems, the pretty much guarantee future surgery to correct shifting and other issues. I'm only getting older, I don't want to set myself up for future surgeries. Once again, I think women are making emotional based decisions and are not fully informed. It saddens me and makes me outraged at the same time.

Unicorn

Ok up until yesterday I have been reading about the disease of breast cancer. Treatments of it and surgical choices in regards to survival rates. Peeked briefly at reconstruction surgery as my surgeon brought up I could have reconstruction surgery at the time of removal. Ok this seemed reasonable to me as then one surgery all done. Well, not exactly.

Last night I realized that after today, I will most likely be making surgery decisions and I had better read up on reconstruction.

So here we go:

There are basically three choices 1. this crazy flap trap thing where they actually take a flap of your body, from your stomach or butt or thigh or somewhere and make a boob. Surgery is about 12 to 17 hours. Recovery time is ungodly and it can fail. Fail? yes because its microscopic surgery where they are hooking up all the veins to supply blood the new boob and if it fails then the new boob stops getting the blood it needs....ok I stopped reading at this point. Ewwwww. Rotting boob on chest. That's all I could invision. Decision No. no no no no couldn't pay me enough money to do this. On to the next one

2. reconstruction surgery at time of mastectomy. Ok seems reasonable. It adds 2 to 3 hours to an already expected 2 hours surgery. So fast math tells me under for 4 to 5 hours. Not feeling so good about it now. Recovery time in hospital a couple of days longer. Recovery time over all longer. More pain. I'm not liking any of this but, its not like the mastectomy alone is going to be a walk in the park. But, there's more. They are basically doing a boob job. So saline filled silicone bag goes into the empty skin. And poof new boob. But, because its a foreign object your body is going to make heavy scar tissue around this bag which could displace the bag and have it ride up high on your chest or to the right or to the left or well just not where it should be and you'll be lop sided. Then the scar tissue could form so heavy that it actually squeezes the bag and pop goes the boob. The scar tissue could become painful. Ok all this leads to more surgery to fix the wondering/deflating boob. And you're going to have to have surgery at some point down the line because these things just don't last a life time to begin with. So new boob=more surgery. Not feeling warm and fuzzy. Oh and its not just a one shot deal because about a year after they go back to do a second surgery to give you a nipple. Yea they construct one out of skin all kinds of ways for them to do this and then...because the nipple just looks like skin, later you go to the doctors office and he...tattoos the nipple to match the color of your other nipple. Want to see my tattoo...flash.

Option 3. Delayed reconstruction. Same as 2 only done later down the road. But, this is going to add one more part. So quickly. 1. surgery to put in expanders to stretch the skin to the desirable size usually takes up to 8 weeks. 2.another surgery to put the bag in. 3. surgery to put on the nipple. 4. tattoo.

Oh and we are not done. We are forgetting someone here, yes the other boob. The new boob is going to be new. Perky. Not matching the other boob. So the healthy unscathed boob, needs readjusting this could be anything from lifted to its own bag of scar producing tissue and all the problems that could entail.

All this to put a non functioning appendage onto my chest? Is our society so boob obessive that women are actually putting themselves through all this torture. Invasive surgery. Pain. Possibly complications. Further risks?

Conclusion:

I'm going to be a unicorn. And as some of you know I don't wear bras and I'll be damned if I'm going to wear one just so I can stuff a sock into the empty cup to appease society's sensibilies. I'm going to wear my battle scars as a badge of courage! I'll wear what ever the hell I want and be proud to be a unicorn!

Then again I'm not right in the head right now and delayed reconstruction surgery can be done at anytime. So if later I want my boob back and can go through the torture and do it.

But, I can't play the ukulele with it, can't paint with it, can't drive the car with it. All it can do is fill up a bra cup and I don't wear those.

Unless some medical professional does a sale's job of the century, I think I'm ok without it. I don't gain my self worth or sense of who I am from them. I didn't give them a whole lot of thought before I got breast cancer. Now they are on my mind because they are trying to kill me.

Yep, I'm going give living as a unicorn a try.

Thursday, April 15, 2010

Random Thought

Have had this random thought frequently today as I refrained from grabbing the xanax. Yea I know that's what its there for but, I know the anxiety was spiking today due to the doctor's appt. tomorrow and facing more news. Makes you want to stick your fingers in your ears and go lalalalalala. But, before I don the armor and hone my sword to slay the dragon, I need to gather as much information about the dragon as possible.

So on to the random thought:

We are going to die. No dodging that one and while we know this, we don't know how exactly that is going to happen. When life gives you a peek at the possiblity of how that might go down...grab the xanax. But, I didn't, I didn't grab it because I'm reinforcing my armor and honing my sword. And trying to conquer fears.

Bet your ass I'm taking one to sleep though!

Appt is not until 4:30pm. Will update after at some point.

Impressed

My surgeon called me today to see where I was with things. Well, what she asked was how I was doing. I had let her know last week that I was going to be seeing Dr. Barth via email and she had responded that I was in excellent hands. Told her I was seeing him tomorrow and that a PET scan had been done and he had sent my tissues out for additional testing. Told her I was guessing that surgery might be my next step but, was going a bit blindly as to what was next but, that Dr. Barth's physician's assistant had said they generally only do chemo first if the tumor is really large and going to be hard to operate on to remove. She said if surgery was the next course of action that Dr. Barth and I decided on, to give her office a call and they would get me on the schedule.

Here is where I appreciate this woman. She is a surgeon and she is not trying to do any diagnosing here. I will tell you that you don't want a surgeon doing any diagnosing, because quite frankly they aren't too good at it. So I really appreciate the fact that she had told me during my consultation with her what my surgery options were, but didn't try to diagnose me, in fact she didn't even lean toward one surgical procedure over the other.

I guess Dr. Barth and I will have to hash it out.

Survival Rates....just don't look

Wasn't going to look at breast cancer survival rates. Have been reading only about my disease and stats on recurrence to try and make some decisions. But, I found myself looking up survival rates and grabbing the xanax. And its not like breast cancer survival rates are dismal, but it seems any percentage that isn't 100% has your stomach clenching.

So here is what I have learned from over studying survival rates. Cancer survival rates are stated as a 5 year survival percentage. Well fuck. Who cares about living another 5 years? You can find long term survival rates of 15 to 20 years but, here's the deal. Long term rates mean the people reflected had treatment that was around 15 to 20 years ago so that's not good reflection on what the current day survival rate is thus the 5 year. And the bottom line is that survival rates are a score card for the medical profession but, really mean nothing to the person with cancer. How? how? well, here's how, they got to keep track of deaths because how is the medical profession going to know if the treatments they are doing are helping or not? by how many people live and how many die. But, that really has nothing to do with the individual and what is going to happen to them. Plus with a lot of stats you will see a disclaimer that says, these percentage do not take into account people that died from natural causes or accidental deaths. Sometimes that means they didn't count those people other times well, they tried not to but some might have slipped in.

So here is my conclusion from reading all these rates and how they apply to me... my survival rate is this... I'm either 100% alive or 100% dead. I think these rates can be applied to anyone and are reflective of what is true.

Wednesday, April 14, 2010

Telemarketers and cancer

Sweet Mother of God you all know how I feel about telemarketers. Well I can't see the caller ID on my phone without my glasses on and since I've been waiting for call backs from doctors these days, I'm not taking the time to put them on before answering the phone. And the word is out. Out in the telemarketing community that if they call I'll answer the phone. Now I know what it feels like to be circled by sharks.

My pat answer has been now is not a good time and hang up. But, Lord help me there has been one persistint TM from the Angel's baseball gig. Same woman calling me over and over. Trying to talk to me about buying group tickets. We went as a group once ages ago, I don't remember being in charge of that but, I must have been involved somehow. I said now is not a good time. Called back, ok I'm going through medical tests right now. Called back. Look I'm dealing with a serious illness please take me off the call list. Called back. That's it look I have breast cancer and I don't have time to arrange a fucking group outing to the baseball game much less be able to actually attend it so take me off you call list. Silence, so sorry she says. Now I feel bad but some people thick as a brick.

Tick tock tick tock

Oh the waiting. I go to the oncologist on Friday at 4:30. Until then just waiting and trying not to second guess anything. The doctor isn't second guessing anything which is why the additional test so, I shouldn't either.

Am now flip flopping on the bilateral mastectomy as the decrease in getting cancer in the other breast well, those stats are all over the place. So now I am perhaps leaning away from that decision. I just refuse to put wear and tear on my body out of pure fear. It has to be a sound decision with something to back it up. Thus the genentics testing I'm hoping will put some light on that decision.

Deaths from breast cancer have been steadily declining over the last ten years, however, the number of women deciding to have a bilateral is increasing. This has the medical community baffled. Well I can tell them why (because we all know I have all the answers) because women are making fear based decisions. Because obviously they are not getting the information they need to make a sound decision or its not being explained to them correctly. Also an added bonus is that now they are doing breast reconstruction at the time of the breast surgery to remove the cancer. So all surgery in one shot. While this is nice guess what? its easier for the plastic surgeons to make two new matching knockers than it is for them to try and get one to look like the other one. So, if a woman says I'm thinking of bilateral, the plastic surgeon is more likely to say yea. Ok this is why you don't let surgeons diagnose you. Its why I'm seeing a oncologist before making any final decisions about surgery. The radiologist let me know it was cancer, my surgeon filled me in on surgery options but no one has actually told me what I'm dealing with here other than its aggressive. And yet most women will make a surgery decision and go into surgery with that alone. The fear when first diagnosed with cancer is a ball grabbing all consuming fear. I had to take xanax just to be able to hear and comprehend what was being said to me. But, given a bit of time that does abate somewhat. Which is where I'm at now. And I feel I'm at a place where I can make a sane decision. At least that's what I'm hoping!

Tuesday, April 13, 2010

Weight

God bless my mom. I love her, I truly do. And she just can't help herself. Now I should say here that she was an overweight child and so weight is just an issue with her.

I was talking to her this morning and she says, now I want you to put on some weight so you don't get too thin during chemo.

I said well, mom it doesn't work that way, you gain weight with chemo because of the steriods they have to put you on. You can generally expect to gain 20 to 30 pounds.

And she is stunned, shocked she says you doooo? well I'm so glad you let me know and I promise I'll keep my mouth shut about it and won't say a word.

Oh Lord! I just said gently well, mom the weight is really the least of my worries and there is nothing I can do about it.

She says well, I'm not going to buy you any new clothes, I have plenty of lose fitting things and we just won't think about it.

I'm smacking my forehead now.

I think its really going to be hard for my mom to watch her daughter balloon up in weight and lose all her hair. I feel for her because its just an added thing that is going to make it hard on her.

But, maybe my cancer will be putting another person perspective as to what is important in life in line.

Monday, April 12, 2010

Done with PET scan

Ok so the PET scan was not as involved as I had read. Or they just didn't explain it correctely. The sites I went to kept talking about an IV drip. Nope. Here's the deal. They set up an IV, bring out an large can of tuna looking thing which is got your radio active gluclose in it and they hook it up to the iv and inject it into you. Took maybe 15 seconds. And then they just injected a bit of saline solution to rinse in all in. And then they took the IV out. I was WHAT? that's it? The tech doing it says yea the IV just insures it gets into the vein other wise the whole test fails. Ok makes sense. Then they put you into a quiet room by yourself. Really nice recline comfy chair, blankets and you sit for 45 minutes. No sugar rush because I just don't think there was that much to start with. Or it was really concentrated, not sure, didn't feel anything when it was injected. Then they get you to pee because whatever is going on in your body its made you need to pee.

Then off to get scanned. Onto a table and the thing you are laying on moves you in and out of a narrow tube. No noise. Not loud like the MRI really didn't hear anything. But I opened my eyes once inside the tube and thought oh nope I feel like I'm in a refridgerator so kept them closed after that. Was in there for 35 minutes.

Chris was impressed because they said it would take a total of two hours and I guess the kid was timing it because he said it took exactly 2 hours to the minute.

Guess I'm impressed too.

Finished eating santa fe chicken sandwich and oreo cookie malt from Carl's JR. Yep I'm sleepy.

The fact that I was on xanax made everyone happy. Tech said to me before he set up the iv, so you're on xanax. Oh yea. He says yeeaaa looks like its working. Oh yea. Just don't see the point in going through these procedures sober. Makes it easier on everyone.

Outrage

The U.S. Preventive Task Force has come up with new screening guidelines for breast cancer. And I'm outraged. Totally want to smack someone in the head and give them my cancer!

They have advised changing the age a woman has her first mammogram from 40 to 50 and declared that self breast examines do not decrease deaths from breast cancer but, just cause anxiety and unnecessary test!

Martina N. had commented on this during her interview and I hadn't had a chance to look it up. She said what?, the cancer is going to wait until you're 50!

Well mine didn't and if I hadn't been doing self breast examines and just waiting until I was 50 for my first mammogram dear God that's another 3 years! I'd be dead!

There is not an effective early detection method for breast cancer so, we are going to reduce our efforts to try and find it early?

This is so stupid its outrageous and I'm going to be writing a letter this week.

I just feel like this is a slap in the face to women. Breast cancer is the number two cancer killer of women.

Damn I hope this is not an prelude to what the new health care is going to be in this country. But, if this task force says you don't need one until you're 50 you aren't going to be getting one paid by the national health care until you're 50. And at the same time private insurance will adopt the same policy. Which means if women want to have a fighting chance against this disease they are going to have to pay out of pocket and that means a lot of women are not going to be getting mammograms.

The death rate for breast cancer has been steadily decreasing over the last 10 years for a variety of reasons. Watch them start to rise.

Outrageous!

Sunday, April 11, 2010

The comfort of dogs

Here's the beautiful thing about my dogs. They love me. And right now are the only things that love me that aren't scared for me, because they don't know what the bleep is going on.

They are just crazy happy that I'm home. And we are all piled up together as a pack.

Yep the dogs are in bliss.

On my butt

Today is my rest and sit on my butt day before the PET scan. Got my hard boiled eggs and bacon already for the morning. Must be consumed before 6am. Then water only until my test which is at 2pm.

Have Dr. Appt. with my oncologist on Friday at 4:30pm.

Off to watch some anime shows with Chris

Saturday, April 10, 2010

Mammogram Advice

Ok I know I've been advocating getting mammograms here. And this morning my dad shared with me that when my family was waiting for me to get done with some test I was having, that in the lobby sat a young woman with tears streaming down her face and she was alone.

DON'T GO AND HAVE A MAMMOGRAM ALONE!!! I don't care if its your first, fifteenth, routine mammogram or what take someone with you.

Here's the deal, they are not going to call you in a couple of days with the results, you are going to be told on the spot, looks good or there's an abnormality. Now if there is an abnormality its not necessarily cancer. Its just means there's something on there that doesn't look like everything else. So you will either get scheduled for an ultra sound or get whisked off to have one on the spot. You are going to be told the results of that as well on the spot. Again it won't be that's its cancer or not because they really can't tell conclusively unless a biopsy is done. But, they might want to do one on the spot. So go prepared. Take someone with you to at least drive you home. AND remember that 80% of breast lumps found are NOT cancer.

So I hope I haven't scared anyone out of having a mammogram but, go in pairs please!

Do you have your mammogram buddy?

Friday, April 9, 2010

Xanax

Found out today that yes, thank you God yes I will be able to take my xanax for the PET scan. The nurse told me I could take it in the morning or I could wait and take it just before the test. I might just do both. A little in the am if I stressing and a little before the test. I have to lay still for at least an hour and half while enduring a sugar high!

For those unfamiliar xanax is an anti anxiety med. And its beautiful (if taken correctly!).

Here's some additional info:

Alprazolam was first released by Upjohn (now a part of Pfizer). It is covered under U.S. Patent 3,987,052, which was filed on October 29, 1969, granted on October 19, 1976 and expired in September 1993. Alprazolam was released in 1981.[10][11] The first approved indication was panic disorder. Upjohn took this direction at the behest of a young psychiatrist David Sheehan. Sheehan's suggestion was to use the new distinction the DSM-III created in the classification of anxiety disorders between generalized anxiety disorder (GAD) and panic disorder in order to market alprazolam specifically for the latter. Panic disorder was, at that point, perceived to be rare and treatable only with tricyclic antidepressants; benzodiazepines were thought to be ineffective.

However, from his clinical experience, Sheehan knew panic disorder to be both widespread among the populace and responsive to benzodiazepines. He suggested to Upjohn that marketing alprazolam for panic disorder would both cover new diagnostic territory and emphasize the unique potency of this drug. Sheehan describes that the first group of patients treated by alprazolam was so impressed by its action that the company knew outright that this drug was going to be a hit. A few of those patients actually pooled their money and purchased stock in Upjohn. Several months later, when alprazolam was approved by the United States Food and Drug Administration, they sold out and made a profit.[1

Corks on the ocean

We are but corks on the ocean. As long as we can see the horizon we have the illusion of being in control. Today would be another example of that. Had the dog all set to go board at the vets. All set to go stay at my parents and then my dad calls. Dad is great. He says where do you want to be this weekend. I said honestly at home but, I think mom is about to lose it. He says I'll handle mom don't worry. So I'm now staying at home. Dog not going anywhere.

Here is some more insight to my corks on the ocean. Woke up one morning, had no idea by that night would be deciding to get a divorce. Woke up one morning plan was to make apple pies, didn't know that night would be in the ER with my gallbladder going out on me. Woke up one morning with plans to hang with friends, didn't know I would end up at a job interview that lead to a job. Woke up one morning plans were to take a shower and go to work, didn't know I would find a lump that would turn out to be breast cancer. Each day is a gift. A gift to be unwrapped and you just don't know what will be inside. The good, the bad and the ugly. It's called life.

Favorite Bible verse "and it came to pass" if its good savor and hang on because it will pass and if its bad endure and don't give up because it too will pass.

Dog

Well, crazy food obsessive pug of mine. I love her but I'm putting her butt in the vets over the weekend while we are at my parents. Still getting trancs for her to have on hand but, we decided to take a break from her.

Parents

Well I think my parents are about to crack. My dad was so crazy down tonight. Chris and I talked and we decided to give them a break the only way we can and go stay with them at least over the weekend. That way they don't have to drive. They don't have to right now, but they come over a couple of times day to check on us. That's a lot of driving and it worries me and is wearing them down.

Going to see if I can get some trancs. for Rosie. She is so hyper some place new. And if they don't help or I can't get them, then I'm boarding her for the weekend.

I'm not sure how long past the weekend we will stay. Will see how it goes and how my nerves hold up.

Thursday, April 8, 2010

PET scan

What is PET?

Positron Emission Tomography (PET) is a powerful imaging technique that holds great promise in the diagnosis and treatment of many diseases, particularly cancer. A non-invasive test, PET scans accurately image the cellular function of the human body. In a single PET scan your physician can examine your entire body. PET scanning provides a more complete picture, making it easier for your doctor to diagnose problems, determine the extent of disease, prescribe treatment, and track progress.

Basically what I found is that cancer being a fast growing cell eats up sugar like crazy. Thus the radio active sugar that is injected into you will be concentrated in areas where there is cancer and the dr. can tell where its spread. Or in future if its come back. Yippee!

The will administer this to me in an iv and then I have to lay still and not move or talk for an hour while its getting eaten up by the cancer cells where ever they maybe. Then they put me into machine where I have to lie still while they scan me. Much like the MRI only I don't think I will have to be face down this time.

Oh lord I hope I can take my xanax. Forgot to ask and left a message for the tech doing it to see if I can. Worse case if I don't hear back from her (but I really feel I will tomorrow) then I will take the pills with me and ask when I get there. This is a really touchy test because its trying to measure cellular activity so all kinds of things can throw it off. I don't want to mess it up.

Have an appt.

I have an appt with the oncologist next Friday. The 16th. because he has ordered more tests. I'm having a PET scan on Monday to see if the cancer has spread to the lymph nodes. Dang it. The MRI showed something. The ultra sound did not. I should clarify that doesn't mean it did spread, it means they couldn't see anything obvious. Could still be cancer in there and it just hasn't done anything visable. Was prepared to have to wait until surgery and the removal of some lymph node for biopsy to know for sure but, I guess we get a heads up. Oh waiting for those results is going to be fun. Also he wants more tests ran on my tumor tissue. At least I don't have to do anything for that. Ok I had to sign a release form so they could send it off. Genetic testing and some other "stuff" is what I was told. Didn't ask. All this should be done by next Friday which is why she gave me that appt. I'm good with it. I think the oncologist is getting his ducks in a row before he sees me. This I feel is a good thing. Going to go read on PET scans and tissue genetics and what else he might be testing for. Will report back.

Star Trek and crying

I'm not a cryer. I'm just not. Makes me feel out of control, weak, giving in some how. When I do cry, its in the bathroom with lots of water running to ensure no one can hear. And its those held in silent tears with perhaps a sob escaping thus the water.

But, the dam broke this morning while in the shower. I guess it was bound to happen and while I'm feeling out of control and weak and like I'm giving up some how I think of Star Trek. Ok so who are you going to see cry Mr. Spock or Captain Kirk. No brainer. And Captain Kirk is not going to cry, he is going to wail, from one end of the universe to the other. But, he is not giving up and he is not out of control or weak.

So its a crying day perhaps. Do I feel better? Not really but, I do feel I'm not denying feelings.

So if you feel like shedding some tears, think Captain Kirk and give me more power Scottie.

Martina Navratilova

Martina N. was diagnosed with DCIS breast cancer and spoke about it on ABC Good Morning America yesterday. D. sent me the link thank you. God bless her for coming on TV and publically speaking about it. You could tell it was really really hard for her. And she strongly advocated mammograms. BUT, I was really disappointed in that she didn't advocate self breast exams. She as DCIS which is ductal carcinoma in situ breast cancer. It hasn't spread outside of the ducts yet. Its about the earliest you can find and you really can only find it on a mammogram. Its makes up less than 20% of breast cancers found and when Martina said she was lucky she was. The calcifications she spoked of helped to identify there was a problem and then the biopsy confirmed it. I was also dishearten to hear her say if this hadn't been caught and had gone to a lump then it would have been too late (or something close to that) hey well over 80% of women with breast cancer have a lump and we really don't need to hear anyone say its too late and the truth is its FAR from being too late but I know that because I have read until my eyeballs are about to bleed but, there are a lot of women out there that haven't and hearing that could have put an ungodly amount of fear into then. Made me gasp and I know that's not the situation. Plus she really didn't put into perspective her true situation. Yes she has a good prognosis but, is far from being out of the woods. She has grade 3 cancer. That the highest you can get with bc which means its aggressive. She opted for a lumpectomy with radiation. She had to have the radiation because of the high grade. She got to dodge the chemo and she is lucky. Maybe she was trying to use major fear tactics to get women in to get a mammogram but, I still wish she had said something about self breast exam because 80% of breast lumps are found by the woman. There is no good early detection method in place. Mammograms are catching more breast cancer early but its still less than 20% because they still can't see the majority of DCIS on the mammograms. Was a time with the first mammograms that they couldn't detect it at all so its better but far from what it should be.

Feel yourself up and go get the girls mammograms. Please!!!

Tuesday, April 6, 2010

Update

The physician assistant called back. Took down a bunch of info. Was happy about my surgeon so one more good review for her. She had me fax over all the test results. She is going to put a file together for the oncologist to see and then call me for an appt. When? I don't know, didn't ask but, I'm guessing if it was going to be any length of time I think she would have said something. Maybe. This is an oncologist only facility. They deal with only cancer patients. They got to know we are all about to come unglued. Or crud they have become immune to people on the edge of losing it and just go about business. Well, I guess I'll just wait and see if they call tomorrow. She asked if my surgery was scheduled and I told her no and why. She wasn't on board with having chemo first, but I told her my surgeon was and it was something I wanted to explore with the oncologist and that I wasn't set on having it done first but, was open to it if he thought it would be beneficial. I hope they don't fool around and I can get in there soon.

I'm HER-2 neu NEGATIVE!

My surgeon called me this morning I'm HER-2 neu negative. This is good. Very good. The HER is a type of breast cancer that's very aggressive. About 25-30% of breast cancer are this type and what was on my pathology report was pointing to a positive direction for this but, it turned out negative. My surgeon thought it was an interesting result. I was just relieved. Not out of the woods by a long shot but, its one less thing on my plate.

Now I think I have pinned down an oncologists. The person that sets up appt for new patients is on vacation (of course) and the physician's assistant is taking her place. She called but I didn't check caller ID and she had the wrong name and asked if she had called a certain number which she hadn't. After I hung up then, I glance at the caller Id. Well, shit. So I called back and left another message for her to let her know what had happen. Oh shit happens. I'm sure she will call back eventually. All these little things just feel like boulders right now. Crap.

Connect the dots?

I thought I was doing ok. Really. Emotionally and with the xanax I thought I had a handle on stuff. Then last night I decided to take a bath and relax a bit. After I had my clothes off, I took a gander in the mirror to see how my bruising is coming along. What I saw besides the colorful bruising was about 15 black dots. I thought shit, what kind of bruising is that, what is going on here? Then I took some water and soap to one of those spots and it faded. Then it hit me, its medical sharpy pen marks. Its not bruising. Now I'm standing there a bit numb because someone drew 15 dots on my boob around my tumor site and......I can't remember who, hell I can't remember it being done.

I remember the ultra sound tech making an X under my arm yesterday and sure enough I checked and it was there. They rechecked some lymph nodes yesterday. Everything looked normal which was a huge relief as I didn't have to have another needle pushed into me. But, I don't think she did the dots.

I think it was the surgeon. She took some pics with a camera. Which was weird. Never had anyone take pics of my boobs before. And she tells me don't worry your face isn't in any of them. You know, that just made it creepier. I almost said what are you going to put these on the internet? I held back. Yea thinking back, she must have been the one to do connect the dots.

I should get an oncologist referral today and it will be off to the races again.

Monday, April 5, 2010

Met the surgeon and now decisions

Met the surgeon. I liked her. She talked to us for over an hour along with examining the girls. She didn't tell me anything I didn't already know. But, what she did show me is that she is well organized, can explain things well and is compassionate. It was a CYA talk really. She is going to talk with my internist and a few other people involved and I guess they are going to come up with a suggestion for an oncologist for me to see next. I don't know what my HER-2 neu results are yet. That is a particular type of breast cancer that is extremely aggressive. Signs are pointing that it is most likely positive. Once upon a time that was pretty much a death sentence but, they have since developed a med that is highly effective against it. Why I'm waiting on it is I'm seriously considering doing neo adjuvant chemo. Which is having chemo before surgery. I brought it up and the surgeon said if the HER came back positive she thought I should go that route. Here is my thought process. I'm going to have chemo. There's no getting out of it. Even if the HER is negative because my cancer is high grade and aggressive and chemo works so well with that type of cancer. So having the chemo before surgery does this for the oncologist. It gives them a really good idea of how your cancer is going to respond to the chemo. If the tumor shrinks or even disappears then we know that its really effective. The surgeon doesn't have to be as aggressive. There is less guess work after surgery when you have more chemo (yea there will be more) to know if its working. Traditionally, its surgery and then chemo with tests to indicate if the chemo is working or not but those test are not as clear cut as seeing the effects its having on the tumor. I feel I might as well use this damned tumor towards my advantage. If I have to go through chemo why not do it when it can tell more info and its less of a guessing game as to if its working or not. This is very new. They do know that if the tumor disappears from the chemo (the surgeon still needs to remove the site in which the tumor started) then the survival rate goes through the roof like well over 90%. Why not go for a shot of going through surgery and going through more rounds of chemo after know you got those odds on your side. Any way I'm seriously thinking this is my route. Even if the HER is negative. I have to discuss this with the oncologist but, if that damned tumor can be put to some good use, why not?

The flip side is if it shrinks the tumor but, doesn't get rid of it, it doesn't change the prognosis from what it was if I had the surgery first and then the chemo. In other words it won't hurt to do the chemo first and then surgery second. Yea surgery after chemo is a scary thought but, you wait a month to regain immune system. And I'm going to feel crappy after surgery anyway. I have to read more about it. But, that's it so far.

Other news, got my MRI back and at least it didn't show any new bad stuff! They couldn't detect anything in my lymph nodes which is a good thing. Now I'm not out of the woods as they will be biopsying those during surgery so there could be microscopic critters in there but, nothing obvious is always good. Less of a chance that this stuff has spread to another part of my body. No guarantee but, puts the odds more on my side. And I need all the ones I can get. Yea I had myself ready for the MRI to find the cancer was everywhere including the moon. Its amazing at how much relief you can get from Oh thank God its not as bad as it could be. Counting blessings here.

Sunday, April 4, 2010

Stats

I'm a number person. I like numbers. No guessing. Four is four. We all know what we are talking about. Trying to put some logic into the outrageous fear that comes from the "C" word, no not that "C" word!. And I have come to this conclusion from this past week:

If cancer had a 100% survival rate, then when someone found they had it, bummer, treatment is not going to be fun, yea there's risks to it all but it wouldn't be that gripping fear that has us gasping and grabbing the xananx.

So here's some numbers, about 40,000 women die of breast cancer annually in the US.
About 41,000 people die in car accidents annually in the US.

But no one gasps when we get in the car everyday. Why? why? I'll tell you (because I have all the answers you know) because we have the illusion of control when we are in the car. We are behind the wheel. We have control. Nope. We have the illusion of control.

Illusions and denials. Keeps us from setting our hair on fire.

So here is the bottom line. Cause I like those. I'm going to die......just like everyone else. Is the cancer going to speed that process along? Sure, in some way, how can it not? the wear and tear of the treatments alone is going to to do that but, so can stepping off the curb and being hit by a bus.

Chris wants to go to Gamestop by our house. We are walking. But, damn it, there will be curbs!

Time for another xanax.
Originally posted on face book April 1, 2010

Its cancer. And its aggressive. Well, crap. Had an MRI today. Now that was an experience. Got an IV set up so they could inject me with an dye. Then I had to crawl onto a table and lay face down and put the girls into the holes cut out of the table. It was an awkward maneuver. Oh and I got ear plugs and ear phones so I could listen to music. Sort of because dang is that thing loud! Gee wiz I had no idea MRI machines made that much racket. So I'm laying face down, girls hanging down, and padded bar in between, arms over my head, head in one of those things you find on a massage table, legs propped up with something couldn't see at this point and now I'm told not to move at all but, breath normal but don't take any deep breaths. Ok. So now all I can think about is if I'm breathing to deep or not and oh it was a long 30 minutes. Yep was in the contraption for 30 min.

Details for those interested: I have invasive ducal carcinoma which is the most common type of breast cancer. Bad news is its aggressive. High grade. Its 2 1/2 cm in size. Good news its estrogen receptors which means it feeds off estrogen and so estrogen blockers work well. Seeing one of the countries top breast surgeons Monday morning. Who knows what else will happen.

Taking it one day at a time. If anyone has any questions, please feel free to post.
Originally posted on face book March 30, 2010

Had the girls smooshed and ultra sounded. What they found was a solid mass. Shit. And they did a needle biopsy right then and there. I know all women reading this are grabbing their boobs right now. I'll tell you that the mammogram was way more uncomfortable. They numb you up and after the initial pinch of the injection you really don't feel anything. Then they truss you up like a Christmas goose. The nurse called it the tube top from hell. And she would be right. Man I didn't break my ribs but the way they bind you makes you think you did. Have to stay this way until Thursday morning. Then I get to go back to Hoag at 9:30 am for them to recheck the site of the biopsy to see how its healing and...get the results. I am prepared for the worse and have a top breast surgeon all ready picked out that has been recommended to me by several medical people that I have seen.

They had called my dr and let her know they were doing the biopsy. I called her office to let them know it was done. The nurse is so sweet. She wanted to know all about the procedure and exactly what they did. But, mostly she wanted to know if it hurt. It confirmed my decision to share this here. This was a nurse in a doctors office and she had questions! Mind you this was my internist and not OB GYN. So I'm sure they don't deal with this much as usually it would be your OB that you would go to. But, of course I don't do things the way your suppose to. I went to my internist because I have been seeing her for 18 years. She knows me and my internist takes care of all of me not just bits and pieces. So, when I got home and called in, after I answered the nurses questions I let her know I wanted some xanax phoned in for me. She said of course! That's what you get when you have your internist in on things. Beautiful drugs.

Stayed home today and I have tomorrow off work. Its Caesar Chavez day. And then Thursday morning will go to get the news.

Will be posting updates as they arrive.
Originally posted on face book on March 29, 2010

Well I found a lump in my right breast. And that was NOT on my to do list. I have thought about sharing this experience here and decided that maybe some good would come out of this next journey in my life if I did.

First, there have been times when doing a self examine that I have wondered is that something or not. And then realized nope because I could feel the same thing on the other side in the same spot. But, I have wondered well just what the heck are we feeling for? What does one feel like? What should I be looking for exactly here and all I can tell you is this, when you find something you know it. Its what the bleep is THAT? Yep id you're unsure if you found something or not most likely you didn't. Its truly a oh crap moment.

So tomorrow I get to have the girls smooshed and ultra sounded to determine if this is a cyst or solid mass. Cyst will be aspirated and the fluid biopsy. Solid mass will involve surgery and biopsy.

God bless who ever invented Xanax!

Good Grief!

Have had friends bug me about starting a blog for a while now. Who knew it was going to take breast cancer for me finally do it. Using this tool to keep all those I love in the know about what is going on. Also if I happen to help someone else out there through sharing my experience, great. Not that it is a special or unique one really as one out of eight women will develop breast cancer, but you never know when some small thing you say actually makes a difference for someone else.

I'm going to copy and paste (if I can) a couple of note posts from face book for those who are not on that so everyone is caught up.

I go to the surgeon tomorrow at 8:30 am at Hoag. She is one of the country's top breast surgeons. Women from all over the country come here to see her. This past week anyone who found out that is who I'm seeing just raved about her.

My feelings honestly though are yea ok let's whack the thing out and move on because its going to be the oncologist that is going to have the battle. Not sure who that is going to be yet but often one good doctor leads to another. So, if I'm impressed with this surgeon as everyone else is, I'll go with her recommendation. At least Hoag has 30 oncologist on staff. 6 I believe in the breast cancer center. Surely one of them I'll be happy with.