Wednesday, September 29, 2010

Tracking symptoms cont...

Since Tuesday I haven't taken anymore Benedryl. For the most part I'm not having hay fever symptoms. Maybe once or twice a day my nose will get itchy and start to run. I might sneeze a few times and then the whole episode is over in about 2 or 3 minutes. Strange. But, it definitely lets up and gets better.

Blister is still hanging in there. Hurts but, it's not getting worse. It is trying to heal. Keeps on trying.
My skin is starting to look mildly sun burned. I just keep it well moisturized. So far this is not bothering me. Nurse said today if it gets itchy I can use over the counter cortisone cream.

I think I am feeling a bit tired from the radiation. By 6pm I'm done. PJs and bed for me. Not sleeping but I need to lay down.

And I keep getting this weird metallic funky taste in my mouth. Wonder what the heck that is from? Don't want to think too hard about it!

19 to go.

Monday, September 27, 2010

Tracking symptoms

Starting sneezing itchy runny nose at 10 am. Took one dye free benadryl. Seemed to do the trick for the day. It is now 8:30pm and I seem to be doing fine.

Except it is blazing hot! We are having summer now that it is officially fall?

Sunday, September 26, 2010

Side Effects

The side effects from the herceptin seem to be winding down a bit. Or maybe I am having a better day. I don't know but, I didn't take any Benadryl today. Some what of a runny nose and watery eyes but, they don't itch like crazy.

Will see what tomorrow brings.

Friday, September 24, 2010

Old made new!



Wouldn't be nice to have phones hooked to the wall by cords again? Then we wouldn't be looking for those cordless phones all over the house!

How about TVs with channel turning knobs? Wow no more lost TV remotes.

How about pen, paper, envelope and stamp to correspond with friends. No more frustrating Face Book!

Old made new again!

How it Works.



This is the drug I am receiving and how it works.

The diet and the blister

After research I decided to do a low glycemic load diet. The goal is to keep the blood sugar level so no spikes in insulin. For me it has meant two major things in my diet. No white bread. There goes my white toast in the morning BUT I have replaced in with whole grain bread which is OK. And the biggie. NO desserts. Crap. Finding substitutes. Fruit.

Now blister. I have developed a blister on my incision. This was a spot that was slow to heal. The blister is about the size of a flattened pea. I am putting honey on it and it is starting to form a scab. Looks like it is trying to heal.

The herceptin is giving my hay fever symptoms. Infusion was on Tuesday and the symptoms started Wednesday night. Yesterday was the worse and I also felt like I was trying to get a cold. I wasn't, feeling like you are trying to get a cold is a symptom of herceptin. Today feeling better, still have hay fever symptoms but they are not as bad and benadryl helps.

Tomorrow is another day AND it's Saturday.

Hee Haw! They leave you alone on the weekends!

Wednesday, September 22, 2010

Cancer Patients Should NOT...

...talk to other cancer patients. Because we are just people out of our heads.

Tough day at the oncologist yesterday. I went for the second herceptin infusion. Things went fine for me. It was the talking to other cancer patients that went wrong.

First up. The woman in the waiting room. She looks at me and says do you have cancer? Yes. She says I have cancer. I have cancer of the colon and it is in my liver. Two years ago I had just had a baby and went to my doctor because I was passing blood in my stool. She told me you just had a baby, it's hemorrhoids. I kept going back to her over the next two years because it wasn't getting better and I didn't feel good. I put so much into this doctor because she had graduated from Harvard. Then the nurse came and called her back with some other people. I didn't really get a chance to respond and I don't know how she finally got diagnosed. Shit. She has a 2 year old and a 4 year old. If you know something is wrong and your Harvard doctor is ignoring you, find one that went to a less prestigious college but, can actually think and listen!

Next up. We are now sitting in chemo row as all the cubbies were full. Next to me is the woman who had chemo on Thursdays with me. I haven't seen her since June when I was finished. We got caught up. She finished chemo in July and had surgery at the end of August. I asked her how she was doing. This is cancer patient code for where do things stand for you now. She says I have to have a second surgery. They want to take more lymph nodes out from my right side. Now, we just sit a minute and stare at each other. This is the oh fuck stare. She goes on to say they are doing as outpatient and with a local. Good I respond you won't have to be put out again and you can go home. You got to find the good stuff. Basically to interpret, more lymph node removal means they found cancer in all the ones they took out and feel they need to take out more. Invasive and aggressive is what this means. Shit. She was just having blood drawn and left when she was done.

Next up. Oh yea it gets better. This poor bastard comes in to get his blood drawn. Not sure what the problem was but it seems he didn't hydrate enough. They poked him like a human pin cushion for 30 minutes before they got something. And then the vein quit. The nurse said let me go run this and see if I got enough. He was gone shorty after. Not sure if he bailed or if she actually got enough blood. Tip: before anyone is going to stick a needle in your vein, be hydrated. Drink tons of water the day before and of. Best until your pee is clear and keep it that way. Plump veins.

Next up. These two guys and ways down the row. They both had cancer of the lymph nodes of some sort. I could just hear them exchanging stories and notes on reactions and drugs. OK not so bad and at least it seemed like they were trying to support each other.

Next up. AND this was the killer. Man in a wheel chair. Age hard to determine, well over 6 feet tall. Had the most wicked stitched up incision on the side of his head. Fuck man brain cancer. He is in bad shape. Bad. Took four people to help him get on the scales. They wanted to weigh him. His weight was 230. Nurse says he has lost 10 pounds since Friday! No one is happy. The nurse says get him back there on a bed and let's hydrate him. Then Nicole the physicians assistant appears. She goes to talk to him and the two women with him. We left before he appeared again.

Rough day. My next infusion in Oct. 12th. Hope there is a cubbie available.

It's My Birthday!

Toot!

Monday, September 20, 2010

Live Life to its Fullest...

experience all that you can. How about a MUGA? Multi Gated Acquisition Scan is a time-proven nuclear medicine test designed to evaluate the function of the right and left ventricles of the heart. It is also called radionuclide angiography, as well as gated blood pool imaging. This modality uniquely provides a cine image of the beating heart, and allows the interpreter to determine the efficiency of the individual heart chambers. MUGA scanning may be a valuable adjunct to the echocardiogram. Thanks Wikipedia.

What was involved today was an IV (no fluids) set up, draw some blood, take blood and do magical things to it so that radioactive isotopes attached to the red blood cells, inject blood back into me and then scan away. This scan was very quiet and I was not inside a tube. Rather square things rotated around me. Took about 30 minutes for the scan part and 25 minutes for the magical blood part.

Worse part? I was in a pissy mood. I'm at that point where I'm done with people messing with me. The technician didn't look anything like George Clooney but, he sounded just like him. Freaky really. He asked me how are you doing today? Why do these fuckers ask you this? Let's see I can think of a million six other things I rather be doing (a million six is a reference to a Steve Martin joke). I said "I'm not fit to be with humans". I think he tripped. He takes me into this room where I plop myself promptly in the chair of torture. That chair is always the obvious one in the room. He asks "have you already had chemo?" I outrageously say"Dude, doesn't the hair scream I just got done with chemo?" He says "yea uh, well umm, when were you finished?" June 24th. He proceeds to tell me this is a really easy test blah blah blah the floatation devices are located under your seats, emergency exits are located...blah blah. I am the queen of scans. I don't care that I haven't had this exact one before, I know the drill. I know what to expect. But, what I didn't expect is that the queen didn't get her gown. Nope. No gown was don for this scan. I got to wear my very own clothes. How refreshing.

Tomorrow I'm going back to radiation and I have my second herceptin infusion.

Good news is the numbing cream worked really well. It was OK last week but, today was great. I think I know now how much to put on (lots) and I need to cover a larger area. I'm set for tomorrow with the cream. Should work better this time.

Since Thursday night I have felt like I have been having hay fever. I'm convinced now that it is the herceptin. Benedryl is helping but I hate the way it makes me feel. Tonight seems to be better. Will talk to nurses tomorrow. Feeling like you have hay fever is not an uncommon side effect. Usually side effects lessen as your body adjusts. Just saying there is hope I won't feel like shit for an entire year.

Yea I'm just little miss sunshine today.

Is it Friday yet?

It's Sucky Monday

Well, it's Monday again. Let the torture begin. Today I've had radiation. I've developed a blister on my incision. Which I had a nurse look at. She informed me that it did not look like a radiation blister as it's under the skin (not raised). Keep it moisturized, keep an eye on it and don't wear anything abrasive. OK I didn't expect her to say anything more than that. I pointed it out to make sure everyone was aware and that it could be monitor. Fine. It hurts a bit. And I know it's not going to be getting any better until after radiation. Joys.

Next up on the agenda today, MUGA. My heart function scan. I have the numbing cream on now.

Tomorrow back to radiation and my second herceptin infusion. Have felt like I've been having a hay fever attack since Friday. I think it's the herceptin. Been taking Benedryl off and on. Getting some relieve with that but, mostly what seems to calm it down is me sitting still and not moving around.

I'm off and the self pity party is in full swing!

Thursday, September 16, 2010

Crazy Week!!!

What a week and it's not over yet! Monday was radiation, Dr. Barth and Dr. Guerra. Tuesday radiation and herceptin infusion. Wednesday radiation, saw radiation oncologist and radiation nurse. Thursday oh hey that's today, just radiation but I got a call from Dr. Barth's and he wants me to have a MUGA ASAP..

MUGA is a heart function scan and the ASAP was due more to my insurance. Go figure this one. My insurance will cover the herceptin but, only if I have a MUGA every three months while on the herceptin. No MUGA, they won't pay for the herceptin. It's only costing them more money so I can't figure it out. Since I already started on the herceptin we need to get the scan done ASAP. So it's scheduled for Monday and my insurance already approved for me to have them every three months for a year at Hoag.

So the craziness should slow down after Tuesday I'm hoping. Monday radiation at 8:30 and MUGA at 11:30. Tuesday radiation at 8:30 second herceptin infusion at 10:30. I won't have another infusion for three weeks and during that time I should only have radiation. I hope. These multiple "things" on the same day are just a little overbearing. The radiation being daily makes it hard for there not to be multiple things going on.


BUT, they leave me alone on the weekends.

Thank God tomorrow is FRIDAY!!

Monday, September 13, 2010

The good, the good, the one bad.

No more chemo. That is the biggest good. The Topo II alpha gene was not amplified, also was not deleted (which from my readings is a bad thing but, I didn't read why) it was just normal. What does this mean? I don't need chemo. The more good is that Topo II alpha when amplified usually makes the cancer resistant to herceptin they don't know why but, it does. So mine is not, this is another good.

Also more good is that there are two things inside the cancer cell that when mutated makes the cancer a run away train. Mine are not mutated and are still strongly intact. Whew. This is very good news.

I was worried about being ER+ and HER+ because from what I have read, it's rare and they don't feel it's a good combo because it seems you don't respond to hormone blockers. Dr. Barth said no. His experience is that it is better to have both. He is glad I have both. He doesn't just study this thing he works with it. I trust him. The ER+ being resistant to the hormone blocker has to do with something else and here come the one bad.

I have a pathway activated called PI3K. It somehow gets around the ER+ receptor blocker by being able to also use insulin. So it will receive signals from estrogen but also insulin. SO, Dr. Barth wants be to drop 5 pound but only one no more than two per month. So slowly. He wants me to not eat starches. I got to read. It was very vague. No bread, rice, white potatoes or pasta. He said simply don't eat anything white. Brown was OK. Brown rice. Whole wheat. Yea well, research I go and I know many of you already on dietary restrictions can probably help me with that.

But, what is promising is that in December there is a conference in San Antonio and Dr. Barth said they have done new clinical studies on this very thing the PI3K and they would be releasing findings and he knows they have found ways to deal with it. So he said in the mean time the herceptin would be keeping things covered. Once I'm done with radiation I will go on the hormone blockers. And in the mean time I will be changing my diet.

The other good and this is probably the best good is he said he has to remind himself and me as well that this is a stage 2a and negative lymph node status. He said because there was residual cancer in the breast after chemo that if there had been cancer in the lymph node there would been residual there as well. Since none was found we can be assured that none was there to start with.

I will be starting herceptin tomorrow. Then I will get another dose next week. They load dose you start with then it will be every three weeks after that. The hormone blocker when I start that is pill form.

Off to see Dr. Guerra.

Sunday, September 12, 2010

You Are ON the Right Page

I just got tired of pink. AND God help us all I discovered how to change the template.
Enjoy the new look.

I can relate

I feel like this. Like I am two people. The sane rational one who knows in her gut that she is going to be OK. And the crazy over analyzing reading way more than I have any business reading making the anxiety go through the roof.

So I have forbidden myself to read anymore about breast cancer. More specific HER2.

I will wait to see what light my cerebral warrior will bring to the table tomorrow.

Until then, enjoy this:

Gentle Compassion

I have gotten the luxury of experiencing gentle compassion. Because I have cancer. Because I could die from it. People talk to me with a gentle compassion. What does that mean? It's not that they guard their words, although some of that happens, I can see it. It's the energy. It's the energy they project while talking to me. It's not pity or maybe it is a form of that. There is a feeling of oh I'm glad it's not me behind it sometimes. But mostly it's a compassionate energy. An attempt at comforting behind it.

And here is the reality. We should all interact with each other with this energy and intention, because we are all going to die. And when we spend time in each others presence, it should be done with the feeling that this, this time spent together is precious, it's not limitless and won't happen again. Then someone will say something to irate the hell out of you and all you want to do is slap them up the side of the head and out the window goes all those intentions and you're glad the time has a limit.

OK well, we should at least make the attempt!

Saturday, September 11, 2010

Shaving

This not shaving the arm pits.....well, I have discovered that no matter what the circumstances we all have our limits. I reached mine. NO, sorry but NO I AM NOT dealing with hairy arm pits until some stupid time in the future. I mean really, what bad thing can happen if I very carefully shave my arm pits when they get to the point where I just can't take it? I can go about a week. So really? really? I shave them once a week through this and something bad will happen?

Bullshit, the something bad already happened.

I'm shaving my pits. If asked, no I'm not, the hair never came back after chemo. That's my story and I'm sticking to it.

Besides as far as I know they are not radiating the arm pit area because I was node negative. I have no marks there and I think I'm pretty sure I would have marks if they were radiating there. So, I'm pretty sure I'm OK. Why don't you ask, because the bastards will just tell me no because it safer.

Arm pit hair, I command you, be gone!

Leg pain

Last night slept. Didn't wake up until 6 am. Bliss. Blissful sleep. Ahhhhh. Much better today. Leg pain but more along the lines of oh I worked out too much and it came and went. Soaked in the spa again tonight. Am seeing if spa treatments work.

Friday, September 10, 2010

Leg Pain!

Leg pain is a side effect of chemo. I've had it since the beginning but, I think it's worse. But, then again maybe not. When on chemo and feeling crappy, leg pain well, just didn't make much of an impression. But, now that I'm feeling like myself again it's bother some.

Crap. I will talk to Dr. Barth my cerebral warrior on Monday. But, how to describe exactly what is going on and if it's worse or not is going to be hard. So, I'm thinking about it.

Guess I should have kept a daily diary on how I was feeling physically during this.

Shit.

Starting one now!

Wednesday, September 8, 2010

Tribute

There was a five year clinical trial done involving 3,300 women with early breast cancer (stage 1-3 from 2000 to 2005 I think). Up until then (but only a few years I can't remember exactly) herceptin was only used for women with metastasised breast cancer. They were benefiting and they wanted to find out if women with early breast cancer would benefit as well.

About half the women in the group chose to have the herceptin the rest chose not to. AND they did chose this was not one of those random trials. God Bless them. All 3,300 scared out of their minds women. Those brave enough to take a drug and not know the outcome or what it would do to them and those brave enough to decide to fore go it.

They have 2, 3 and 4 year survival rates. I'll jump to the 4 year mark. 85% of the women in the herceptin group were alive. 67% in the non herceptin group. That's sobering.

I'm going to be getting herceptin so I'm assured that the odds are being stacked in my favor. And there is one more factor that is in my favor but we don't know by how much. Very very few of the 3,300 women were node free. So few that they couldn't do a separate study of these women. I'm node negative. We know that node negative breast cancer has a better prognosis to start with we just don't know how much better the prognosis is with herceptin. But, I'm counting on it being better because it is in every other case.

Yea I'm going to a crazy place right now and I will be there until I see Dr. Barth on the 13th.

He is my cerebral warrior.

In a way some would think I was brave too as they don't know the long term effects of this drug. What I do know is that it has kept women with the worse cases metastasised breast cancer alive for years. That is good enough for me. I'm not the FDA and I don't need 25 years of clinical trials to convince me. Plus I don't have that time to wait around and see anyway.

Herceptin my bullet proof vest.

The Dressing Room

Well I can tell that the dressing room for radiation is going to be a place for fodder for my blog. Yes, the dressing room.

The dressing room is also the waiting room for patients only. And of course there is a men's and a women's. So inside the room is changing cubicles like at a department store. Lockers to put your stuff in but, no locks and the rest is a waiting area with chairs, magazines, water and TV. So you sign yourself in at the main lobby and head on back. Wow you don't have to wait for someone to lead you. It's kind of nice. On Monday's you stop by the scales and weigh yourself and step over to the desk and write your name and weight down on a piece of paper and deposit this into a box. Sweet. The off to the dressing room where you grab a gown, change and put your stuff into the locker. Have a seat and wait for them to call you over the PA. I had just walked into the dressing room when they called my name, I yelled back "I have to change" then I look at the one other woman in the room and ask "can they hear you?" She says "I don't know, do you want me to go tell them you are changing" I said "no, that's OK it's not like they can start without me" Then her name was called so she had to go.

Yep. Just as I had suspected they didn't start without me.

I'm done and back to the dressing room I go. There is the woman I had seen earlier. All dressed and sitting. We get to chatting. She tells me that she has some sort of duct cancer. It must be the liver because she said they found it when she woke up one morning all jaundice. Yikes. She said she opted not to do surgery because it was a huge procedure and took over 12 hours.

She went on to say that it takes a long time for your body to recover from it and to start functioning again and that at the age of 82 she simply did not have that kind of time for healing.

"I do not have that kind of time for healing" Purity. The energy behind that statement was so pure. I don't know how else to describe it. I was blessed to be in its presents. No fear, no panic, not even quiet acceptance. It's hard to describe it other than pure. And maybe you have to have cancer to appreciate it.

She said that the surgeon said he was going to be really agressive with her. And she told him no not with this body your not. So she is doing chemo and radiation and the woman looked fantastic. I would have guess late 60s early 70s not 82.

Tomorrow is another day. I wonder what blessed event the dressing room will provide.

Tuesday, September 7, 2010

First Rad

Pretty uneventful. No tattoos yet. They said they would do them tomorrow. I think because I confirmed that I wanted them. I'm not dealing with the itchy sticky worrisome tape. So they said they would do them tomorrow and I guess that way they can be all set up and ready to do it.

One down. Thirty-five to go.

Shaving Cream (new song version)



And now my new version:

I have a big boast to make here
It might make you envy a bit
But, while I was on chemo
I had no hair in my arm pits

Shaving cream be nice and clean
Shave everyday and you'll be always look keen

But now its been weeks since treatment
My hair is growing a bit
I find I must grab a razor
And shave those hairy arm pits

Shaving cream be nice and clean
Shave everyday and you'll always look keen

Oh but I'm starting radiation
And they have told I must quit
I can no loooonger
Shave those darn arm pits

Shaving cream be nice and clean
Shave everyday and you'll always look keen

While not shaving pits is bad
There is something else I can't
It's hard for me to believe
But there will be no deodorant

Shaving cream be nice and clean
Shave everyday and you'll always look keen

So while radiation is needed
And I'm doing it to get welly
I'm afraid while going through it
I'm going to be hairy and smelly

Shaving cream be nice and clean
Shave everyday and you'll always look keen

But wait not all is lost
I look down without delay
Quick grab a sharp razor
And shave those damned hairy legs

Shaving cream be nice and clean
Shave everyday and you'll always look keen

And again I might face chemo
It won't all be so bad
I'll once again be hairless
And so I'll try not to be so sad

Shaving cream be nice and clean
Shave everyday and you'll always be keen

Monday, September 6, 2010

Labor Day

From Wikipedia


Labor Day is a United States federal holiday observed on the first Monday in September (September 6 in 2010).

The first Labor Day in the United States was observed on September 5, 1882 in New York City, by the Central Labor Union of New York, the nation's first integrated major trade union.[1] It became a federal holiday in 1894, when, following the deaths of a number of workers at the hands of the U.S. military and U.S. Marshals during the Pullman Strike, President Grover Cleveland put reconciliation with the labor movement as a top political priority. Fearing further conflict, legislation making Labor Day a national holiday was rushed through Congress unanimously and signed into law a mere six days after the end of the strike.[2]

During the course of the strike, 13 strikers were killed and 57 were wounded.


Sunday, September 5, 2010

Toy Story 3 Another Cancer Story

For those of you who have seen Toy Story 3, you might not want to read this and those of you who haven't seen it, may want to before reading this and those of you who....oh never mind there is no way in hell any of you are going to stop reading now.

I went and saw Toy Story 3 with Chris today. It's a cancer story. I tell you it's a cancer story! Someone went through cancer.

WARNING MAJOR PLOT SPOILERS:

The movie starts off with diagnosis. Are they going to the attic or the curb for trash pick up. Do they have curable cancer or are they going to die. They don't know. Hysteria breaks out literally. The dinosaur yells "I can't take the uncertainty of it all!!!!" He needed a xanax.

They are pretty sure they were going to the curb so they are looking at treatment plans and they decide on Sunnyday Preschool. Better than the curb. And when they get to Sunnyday Preschool well it looks good. They are hopeful. But then treatment starts. Yes treatment which feels like a prison because your life is no longer yours. And there is Lotsa hugs bear. He looks friendly. Yes he is the hiding part of the disease that hasn't been revealed yet. And then he rears his ugly head. Crap it's aggressive cancer! He is one mean bear.

Woody escapes as some do avoid certain types of treatments but, he relapses and ends up going back to Sunnydale.

Lotsa hugs bear turns into a really aggressive cancer and there they are fighting for their very lifes. Really on the edge and they turn to the aggressive cancer Lotsa hugs to save they day because aggressive cancer will respond better to some treatments than less aggressive cancer. He let's them down.

Now they are doomed. Doomed headed towards the flaming inferno. And they all hold hands and peacefully accept the inevitable. Then the crane, the big crane comes and scoops them up. Well, it's a Disney Pixar movie and some people that close to the edge of death do get a crane scoop, it's called a miracle and they do happen.

Then they all end up with Bonnie. They have a life but it is not their old life. It is not the same as it was before but, it is good.

We left the theater and Chris says "It wasn't as funny as I thought it was going to be. It was too much like what we are living"

Toy Story 3, another cancer story.

Dogs are making me......

....lose my freakin mind.

I have two dogs. Rosie my 9 year old pug and Roxy my 3 year old chihuahua. Now Roxy sleeps with me and Rosie sleeps with my son, Chris.

Just setting up the situation here so you get the full impact of last nights events.

I find myself at around midnight last night saying OUT LOUD to my pug, "now Rosie if you just need to sleep with momma you are going to have to find another way of expressing that other than peeing in Chris's bed"

She slept the rest of the night with me. Bad thing is that means the peeing worked and she got her way. I don't know where my son slept.

I have lost my mind AND I have laundry to do!

What living truly looks like

It looks like this:



Now I'm not saying go learn to play the uke or your not living but, it would be totally cool if you did!

What I'm saying is find something. Something that brings you joy. That challenges you (not frustrates but, expect some of that). Something that well, feeds your soul.

Then go find your people. Connect with them.

Enrich your life.

Live!

A lot of you are already doing this. Don't stop.

(Thank you Bequi for bringing the ukulele and Lil Rev into my life)

Saturday, September 4, 2010

Lifestyle

It's a lifestyle but, you know what? I still have choices as to what it looks like.

Friday, September 3, 2010

Don't Bother Me

Don't Bother Me Cancer, I'm Busy Living

Yea I'm having that made into a T-shirt because I'm railing against it (hey Mac) I'm railing against it damn it.

What I'm really doing is putting on my girl panties and sucking it up because the other choice is to wallow in self pity and lay on the floor in the fetal position. That's useful.

Most of the time I like to be in Mr. Spock mode. Rational. Logical. Pointed ears and major cerebral mode. I think Mr. Spock's body made his own xanax. Now Captain Kirk I let out once in a while but, it has to be under controled conditions. I'm going into my room, close the door and allowing my self 15 minutes to rail against it all. To cry and wallow in the self pity. Then I'm done.

Lifestyle. It feels like a lifestyle but really it's a long treatment plan. But, you know what so is diabeties and a lot of other diseases. A lot with no end in sight for the treatment part.

So treatment is going to be a part of my life for the next year but, I'm not going to let it BE my life.

I read once where there was a study done and if a person went into a store and had a bad experience it took something like twenty good ones to cancel the feelings of the bad one. I think that hold true for life in general.

I have had people make some comments about the last couple of years of my life. Supportive acknowledging that there has been....OK well that's it's been pretty damn shitty.

There have been three major speed bumps with this last one taking out the transmission. But, there has been way more good stuff. I have had more than three good things happen to me in the last couple of years.

I'm not going to let these couple of unpleasant ones negate those.

So here's my plan because you know I have to have those. In between treatments I'm going to live my life. I'm going to do stuff and drag my family along. Yesterday we went to Disneyland after the radiation appointment. We got there around 3:30 and we didn't leave until 9:30. It was a really nice evening that I spent with my parents. Chris got to hang out with his friends that ended up going that day. It was good. Since I'm not going to be working during this, I plan on spending more time with my friends as well. So just a warning to you all.

I'm going to do stuff to ensure that I have more good moments than bad ones. Thursday I had a bad one with the news of the HER2 but yesterday I had enough good ones that I feel a lot better today.

AND I have decided I'm getting the tattoos. Yesterday during radiation (simulated one not actual treatment yet) they talked to me again and that I don't have to have them but, dang it the clear tape that covers the ink marks are kind of itchy. They re-positioned one and the spot where it was is a bit red. I worry about them coming off. They told me to think about it over the weekend but, no I'm going to go ahead with the tats because it will be more comfortable and less worry.

Now I'm off on the internet to get that T-Shirt made!

I do still have a life

That's it. I'm getting dressed, taking Chris out for breakfast, going to the grocery store, off to the radiologist oncologist for part 2 of simulation at 1:45pm my parents are coming along for that and then I'm dragging everyone up to Disneyland for early dinner.

Take that cancer.

Thursday, September 2, 2010

Good and bad ramblings

While I wait for the xanax to kick in and take me to that blissful place that gets me off this fucking cancer merry go round here is what is rambling around in my brain:

Bad HER2 positive
Good Didn't fall into the 20% crack of false negative and not get treatment
Bad IV every three weeks for a year
Good not chemo
Bad there are side effects
Good not everyone gets them actually a low percentage do
Bad lowers heart function and you have to have your heart test every three months
Good heart function returns to normal after you get off herceptin
Bad we don't even know for sure that I need this because we don't know if there was any escapees.
Good won't be sitting in oncologist office in future with recurrence wishing I had done the herceptin

On some level I feel like I was just diagnosed all over again. All the tears and fears are back. Oh the fear because this is a much more aggressive cancer. But, I get to skip the what do we do, what decisions to I have to make. I get to go right to treatment. As crazy as that sounds it's a relief.

My doctor did a good job. This was tested three times. Three. The chances of this having been overlooked are high. The HERmark test has only been used for 2 years. Not everyone is using it. HERmark keeps trying to push it and get the word out but it's hard for some doctors to change what they have been using for so long.

I had an uneasy feeling about the HER2 from the beginning when I got conflicting test results from the IHC and FISH.

I'm not happy with the results but, am glad I didn't fall through the cracks.

I hope I can dodge the bullet with the other gene not being over expressed. Part of me feels I spoke way too soon on the no more chemo.

Shit

My oncologist called me.

It's HER2 positive.

Herceptin by IV every three weeks for a year here I come.

Can it get worse? Oh you bet your sweet ass it can.

There is another gene (I'm hating genes right now) that if it's is over express (meaning you have more than you should) it works with the HER2 and makes even a more aggressive cancer so guess what? If this other gene (the name is crazy long) is over expressed I get to do a chemo drug with the herceptin because this chemo drug kicks up the herceptin.

But, if that other gene is not over expressed then just the herceptin alone. Which is not a chemo by the way.

Oh just look on the bright side of life! Fuck it.

AND we don't even know if any of this is necessary because we don't know if any of the microscopic buggers escaped from the tumor! This is all just in case.

I just can't take the risk of two years down the line having a recurrence and then saying oops guess I should have done the herceptin. If I was 92 years old yes let's skip it. But, I'm not there yet.

It is not the treatment, but the big unknown that is driving me nuts.

Cancer Sucks!

You know I DO still have a life...

of sorts. These doctors just tell you when your appointment is. They don't say can you make it this day or we have this available. They just say here's when you need to be here. My radiologist oncologist did the same thing when I was there Tuesday. You are to be back here on Friday at 1:45pm.

They know, they know you have cancer what are you going to say sorry I'm busy? With what?

Yep. Jimmy H. you are right....

Cancer is a lifestyle.

Can't they just pretend I might have something more important to do?

Guess not. Because I don't.

Crap....

Dr. Barth's scheduler called. Finally. I told Patty he wanted to see me the third week in Sept. She said I think I have a message from him that he wants to see you earlier than that. Hold on.

Great.

He wants to see you Sept. 13th at 10:30am.

Shit. Looking like things (HER2) are positive. I was wrong about chemo. Hope I'm wrong again but, he wouldn't want to be seeing me earlier if it was negative.

I don't have a choice in this so, I'm just not going to worry about it.

I go for the second part of my simulation tomorrow at 1:45pm. After we are all going up to Disneyland. Trying to have some bleeping fun during all this.

Wednesday, September 1, 2010

How to change your PC to a Mac






The pics are crappy
but, you get the idea!

Love from my son

Simulation and update

Went for simulation yesterday. They put me into a CT-Scan. They place a "pillow" under my head and had me put my hand on the top of my head. Then they filled the pillow up with some sort of gas which filled the pillow up to surround my head and arm and then it hardened. Now I have a mold that they will use every time I go for radiation to make sure my head and arm are in the same position each time. They used some beam that was coming down from the ceiling to line me up and take measurements. My radiologist oncologist came in and he placed stickers that had wires in them on me. Then they put me into the CT scan and took some X-rays (no contrasting dye injection). Then I had to lay in the position and not move while he looked over the X-rays. And he took his sweet time about it too. Then the technician came and made all the marks on me with a marker pen. Then they covered each of those up with a round clear thin sticker. AND then they took a photo of it. I have ten marks.

I go back on Friday and they are going to put me into a real machine and do a test run. They will not be giving me any actual radiation that day. When it all looks good they will be tattooing the marks. Yes permanent tattoos. Unless I'm really opposed to tattoos then they will use a permanent marker but I'll have to be careful not to wash it off. I'm going with the tattoos because I won't have to worry about them coming off and also because it will be a permanent record of where they radiated me because you can't have radiation in the same place twice. Not sure why that is exactly but you can't. I don't want someone in the future to be guessing where the radiation took placed. The tattoos will be just dots. A lot like freckles.

I requested a butterfly.

Still no news on the HER2. Nor do I have a follow up appointment with Dr. Barth yet. Not sure what is up with that. I think I will call again this afternoon.