Not sleeping

I have slept maybe a total of 30 minutes tonight. I have been on lots of steroids and with the pain I have been in, I am wide awake. At 2:30 they finally dosed me with lot of IB proferuen. THey think the cathader is poking my heart or somewhere in there and causing me pain. Its hard to tell whats going on with your guts. I would have never thought I had as much water in my lung as I have, and I honestly would have not imagined any water around my heart. So, I am wide awake getting OBAMAED up.
I called Gen, since she is 3 hours ahead. The IBproferuen helped take the low grade pain to the curb so now I am just up on steroids. I'd have them give me a sleeping pill, but once I realized what was happening to me, it is now the time for everyone to start making their rounds. So I just ordered a small breakfast and maybe that will help me get sleepy.
I am hoping they pull the liquid off my left lung today. Since they keep saying both lungs have about the same amount, and now that I know how much was in the right side. I want the left side tapped so that it can heal quicker. But I don't know the protocol with doing both and the heart within a few days of one another.
I can feel my body besides all this doing better. My blood counts are getting higher and that makes me happy. Soon, this will be a distant memory all you Survivors say. I can't wait. Yesterday I had a few dear friends stop by. Margie, Lea, Sarah, George, and D stopped by after work. They kept me company and helped talk me into a nice sleep. It reminded me of when I first was on AC and Gen was in town taking care of me. I'd have her just talk, and talk she would. She would tell me every story and thought under the sun until I fell asleep.
I'll write more later in the day. Once whatever is going to happen happens. I doubt I will go home today because I still cannot stand up and walk a few steps to the bathroom, use it and walk back, lay down without being in such pain that I need fentanyl. So well see..

Someone's stepping on the hose

Okay. For all you mom's out there. I am back in room 705, at Swedish. I got in touch with my Onc and he had me check myself into the ER. He said that the cardiologist and the on-call Onc would meet me here. One of the messages of this post is that miscommunication happens, and you must be on your tippee toes to be your own advocate, constantly. Because ER doc wanted to give me, himself, alone the diuretic..Which 4 doc's have been debating for an entire week. The reason being is this..Hold on it gets deep...
Okay. Here's the deal. There are two water problems in my body right now and they are related. One being that my whole body is swollen with fluid. The way a body typically gets rid of this fluid is that it gets into your blood vessels and gets pumped through, by your heart, and eventually your kidneys pee it out. Here comes the second water problem. Which is, there is a pocket of water around my hear that is squeezing it. Which makes my heart beat as fast as if I was running. Which is insane. So..its working hard enough doing its thing, (very healthfully i will add) but it can't handle anything more. Like getting rid of my the water in my body. Which has caused a literal backup in my body. Its a vicious cycle.
So the problem with diuretics is two things. THe first thing is that it works on the first fluid problem, the fluid in my legs and everywhere else. Not the fluid around my heart and lungs, which by the way is worse now than last week, says the x-rays and another eccho tonight. The second problem with diuretics is that it lowers the amount of water in my vessels which means that squeezing around my heart would be allowed to squeeze my heart even more. Which would cause low blood pressure. And this would be dangerous.
So...they have now decided to do the heart tap, so that hopefully the vicious back-up problem can be fixed. I of coarse have feelings about this. But that is tomorrow or the next day.

My friend Tamara came and met me at the ER because I was very scared and sad and scared some more. I will write more later. I don't know how this is all going to work out. I am sure I won't die from getting my heart punctured. But just in case, I want to let those of you that know me, know that I love you all. And I have lived a wonder-filled life. And I do not regret anything. I have LIVED! I am just saying this, not to be melodramatic, but because often people hide and don't share how they really feel. So there you go!

****

I am going through my blog, as I write my book years later. February 1, 2012 to be exact. This is the one post that I must change..

Now, I no longer am protecting D. To go back to the phone call my Doc and I had. The one he told me to go to the ER. Well, I was in such debilitating pain, that that night I had a CT scan because they were all afraid I was having a heart attack. I thought I was as well. That is how badly I hurt. Do you know what D said when I said, We have to go to the ER? Sorry, I can't go. I need a break. I am not going to cancel my dinner plans with my friend and we are going to see a show. I can come see you tomorrow. Fuck him. I was so incredibly hurt by this. I was his wife at this point. But a wife that was starting to see the man I had chosen for myself. I was the type of woman that did everything around the house, even during treatment. I still tried grocery shopping, even if I had to ask someone at the grocery to push my cart through the isles. This sucked, and hurt, and tore a huge irreparable whole in my heart allowing me to see that the marriage I'd signed up for, was always, going to be about him.

Lots of food

This past month we've had people bringing food twice a week and it has really helped. Its such a big deal to except this gesture to me. The fact that we need help right now and that this is the most nurturing form of help we get. Simply not having to deal with figuring what to cook but to just go to the fridge and and grab dinner is a blessing. So thank you to all you angels that have been helping us.
I have fleeting worries that the cancer will come back. I guess this is normal. Today it happened. I was standing at the kitchen sink gazing out at the back yard and noticing all the fall color. And the terror of the thought that what if it comes back. I hate all the stats that say 5 or 10 years after treatment the person is still cancer free. Well, I am only 33 and 5 or 10 years is nothing. I wouldn't even be 50 by then. I have to admit that I am freaked out about it. Not that I am dwelling just that I have to acknowledge the possibility. Its kindof like those of you that have been in a bad car accident and as your the passenger in the car the driver makes you scared for your life. You've been through a horrible experience and your body is warning you of danger. Not impending danger, just danger. This is how it feels. My body is scared to go through this again. Not that I feel that I will have to, but I am scared. And honestly, I still cannot believe that that little bump in my boob was a tumor.

Cellulitis

This painful infection is slowly going away. What is crazy is that it all started, we think, from a teeny tiny little scratch the size of a needle head on my right pinky finger. My immune system is pretty lacking right now and due to the 3 nodes they took out of me, diseases like staph don't get filtered through my system as well as they once did. The doctor said that this may be something that I have to watch for for the rest of my life in my right arm. We'll have to see about that.
Now that I can type again, I will back pedal a bit. So, the little doctor that I am. I was 100% certain that I had simply done too many massages and I had developed a bad case of tendonitis in my thumb, that was Monday. On Monday, D suggested I cancel my massages and relax, and go to the doctors. I said no, and did the massages. Tuesday, I woke up and my hand was pounding out of my heart and I couldn't move my hand it was swollen so badly. I iced and iced, and it didn't help the inflammation at all. It just got worse. I called my doctor and told them. They said that they thought it was an infection. I told them I wanted to wait to see them for my scheduled chemo the next day, wednesday. Tuesday night came, and by then my hand was sending shooting nerve pains up into my shoulder and it was so bad I couldn't breath regularly. D suggested for me to take vicodin and I thought for the first time in my life, " Brillant idea." I really needed them. I took them every 2 hours, just a half tab. I am so freaked out by all the news there is about all these people getting addicted, so I use them sparingly. I ended up in the middle of the night realizing that 1/2 tab wasn't enough, the pain seemed to like 2 Advil too. So, that has been my diet for the past few days.
I was disappointed to find out that my chemo got cancelled because of this. I had family in town to help me out for this session, and now I am stuck with pulling through this one on my own. A few friends will come over and help watch me during the day, so that D can do the last minute touches on the house. Starting on Wed, I have been going to the hospital everyday and getting IV antibiotics. Today, I went thinking it was my last day. I thought this because last night the pain diminished and I stopped taking the pain med. The swelling went down enough to not put me in the hospital over the weekend, thank god. But, not enough for my doctor, so I got 3 days added of the IV antibiotic- sat, sun, and monday.
On Monday, we'll be at the hospital, (if I end up getting to do chemo) for close to 8 hours. I have a port test in the morning because since day 1, of it being used, I get a burning sensation whenever they put anything in me there. They say that shouldn't be happening. I think its alright, my intuition (however, it seems that that's been off with everything regarding this cancer crap) think that, but who knows. I am a very sensitive person, and so maybe I can feel inside my arteries? Who knows? After that test, I will get my IV antibiotic and then, possible chemo. I hope so. Its hard to get geared up for a possibility.
D, shaved my head last night. WIll get the pics up probably tomorrow. It looks good, as good as a mangy dog can look. My little bald head has hair and spots of no hair. I can't wait till its all gone and just a smooth little head.

Back to back

I was thinking that back to back would be a good title since I just gave two 1 1/2 hour massages back to back, and I feel awesome. It is so good to be back and fully back. I cannot say how happy I am that I feel normal again. With the whole treatment thing started, I almost mentally feel like Heather again. The old superwoman, Heather.
When I wrote back to back, I also thought that it was a good title with how I am feeling, or is that stuffing, the fact that I have 11 more treatments. In the bottom of my gut and in the back of my mind there is sheer terror with the fact that I have to go through this 11 more times. I am scared and freaked out. I can have a good and optimistic attitude, and hope and try to will my body into not having any reactions to the chemo. But because the first round was so bad, (could've been worse, I could've been puking) that I am a little nervous. So, I just have to think of all the little kids that go through this and all the millions of people worldwide that do chemo and not worry about it. I just have to be a little chemo soldier and keep going.
I am not allowing myself to actually think about my upcoming treatments, except when I am writing here. I am now going to stop myself. Today is a beautiful day in Seattle. Thank God! It has been rainy and cold for most of last week. I have one more 1 1/2 hour massage to do today, and I am looking forward to it. Off to finish, The Book Of Negroes.

A perfect summer day

One of my all time favorite movies is on right now, Charlie and the Chocolate Factory. I couldn't sleep last night. The fact that I can't sleep anymore is so foreign to me. I could go to sleep at 9 or even 8 in the evening and wake up at 6 or 7 the next day, everyday of my life. I have never ever had trouble sleeping. I also never used to not be able to control my mind. Last night was one of those nights. I literally was loosing my mind over everything. I called my friend Gen close to 1 a.m. I knew she'd answer her phone and I also knew she could calm me down. I am anxious about starting chemo. I feel so much pressure to not have any side effects. When I first got diagnosed so many people said they knew people that it didn't effect them at all. At that time, I didn't realize there were different kinds of chemo and different treatments. Now that I have walked in the cancer shoes for almost 7 weeks now, I would say that 90 % of the women I have talked with that did AC got pretty darn sick. I am really nervous about this. I could breeze through this and just need to sleep a lot, or worst case scenario I would be staying in the hospital.
The vast experiences do not bring comfort to me. Sure, those that say attitude made it be a positive experience for them, are also the ones that breezed through it. Is that again just a coping mechanism we have? Attitude doesn't change much, other than I can smile as I go through everything. My mom taught me this as I watched her journey for close to nine years after she had her stroke. My aunts and my siblings, we would choose to laugh with my mom, or we would cry. So, sure, attitude does make things better. The other thing I have found so confusing is that EVERYONE that mentions (usually those of you that do not have cancer) that they have spoke to people that went through chemo #5 was the worst, or #1 was the worst, or #? whatever. You get the idea. What this shows me is that it is my body's chemistry that is going to present to ME, MY process through this. MY body's ability to cope with the chemo and radiation is unknown to everyone, including my Oncologist. He more than anyone, and D is a close second, is just saying we'll have to see. So, last night I couldn't sleep. This whole process is teaching me so much, and one of those lessons is simply not being able to plan. I mean, how could you plan for something like this? Either I just sleep a lot, or I could be walking on the 12th floor of Swedish hospital a few weeks a month. There are too many possibilites. There is one thing for certain, next week at this time we all will know!
On a very fun note, today D and I went out on our friends Todd and Kim's boat. We got lots of sun and I got to have one more summer day before this all starts!

What is Normal?

I am struggling with this sentence?  I have heard D say to me numerous times that he is wanting to move through this, me having breast cancer, as if his life is normal, and that I can have a normal life too, if I want.  It is me that is deciding to not have a "normal" life.  Whatever this means.  Does this mean that all the people that say they have continued with their "normal" lives did these things:  .1. they kept working .2. they were still the happy go lucky people before they got diagnosed .3. their lives were not full of fear, anticipation, angst, sadness, longing for old.  Really, what does, "I can have a normal life if I wanted to mean?" How am I supposed to go back to what was?  I cannot do massage yet, my Doctor said no, and I should wait until I am healed.  Am I supposed to do Real Estate full time?  Impossible!  Maybe, everyone that said they worked full time still, as if they were "normal" worked behind a desk.  

Giving massage right now seems, to me, maybe not to you, but to me inherently wrong.  How is it that I am to heal myself of a major illness and harness the strength to heal someone else?  Forget about real estate completely.  That job is the most STRESSFUL job one can have.  Forget about it!  I'd rather raise twins during this time than be an agent.

My life is not normal, nor will it ever be again.  Maybe D's life is normal, or maybe he can ignore that everything in my life is falling apart, because that is what he has to do to get through this.  Maybe that is a guy's way of dealing with a major illness.  But my life is 100 % affected.  My mind, my heart, my body, my fertility, my hair (i may be grey when this is all done, i've read), my spirit, my soul, *uck I have to look at my mortality daily.  There isn't a moment that goes by that I miss my old life.  My life that 100% I cannot go back to.  My life is changed.  Maybe D's isn't, but mine is.  

The other thing I have to remind myself is that D hasn't gone through major illness before with others and so he doesn't know what to do. Last night when I was falling asleep, I told him I was scared.  He said, "Don't tell me that because I get scared too."  So many things all at once, it is incredibly painful.  I have no idea what I am going to do when this is all over.  I may decide to be an Oncologist.  Who knows?  You all may be throwing dirt on my grave, who knows.  Really.  Who knows.  The limits are endless.  The possibilities are endless.  

And one more thing I have been thinking about.  This is not Beat, with or By Attitude.  I 100% believe, my ability to use visualization and positive is a great thing to do, and I spend about 75% of my day doing just that.  I am positive.  But come on.  Really!  What this boils down to is wether or not my body is going to "take" the chemo.  And from there, that is where I can have a good attitude.  If I am sick, I can remember that I found it, at least.  If I am 100% healed I can be happy as a laughing babe.  If my cancer metastizes than, I can be happy that I am alive that day.  So, yes, I see what attitude means.  But the little scientist in me is so sick of hearing that it, being my survival, is all about my, attitude.  

I am scared shitless about my upcoming chemo treatment.  I have absolutely no idea how my body is going to react to the chemicals.  And I have the absolute right to be scared.  I need my hand held.   Major illnesses in ones life, is one of those crucial, life times that people generally need support from their loved ones.  D thinks that he wouldn't.  He would just take a cab to his appointments, and he may very well be like that if he got sick.  I would have to honor that however hard that would be for me.  We all go through a major illness in our own way.   Luckily for me, I have lots of good friends and family that are dear to me and I want to open my heart to receiving all this love.  That in and of itself, is tough.  To open up to being loved without "doing" anything or giving anything back.  This is one of the most beautiful experiences I have felt in my life, this one gesture.  Simply on the basis of the intent is coming from a PURE place.  

Pixie cut

My sis is on her way down from Eugene, she should be here within the hour.  I need her moral support when I get my hair freakin' chopped off on Friday.  I am not looking forward to it at all.  I am really sad about it, however vain it is.  I loved my hair, it was the longest it had ever been and I just hate not accomplishing a goal.  My goal was to get it down to my butt.  It will take probably ten years to get it that long again.  Besides the fertility thing, this is the runner up with being pissed at something.  You know what?  I am going to make a Pissed off list right now.

1.  Possible menopause and will be not be able to conceive naturally (which sucks. I always dreamt about the day looking into my man's eyes and saying, "let's make a baby."

2.  Cutting my hair down to nothing and then being bald

3.  Not being able have an awesome August and September in the PNW

4.  Not doing real estate as hard core as I was

5. Not being able to carry heavy things, i.e. my massage table

6. Worrying that chemo might not work

7.  Dying and having D love someone else

8.  Dying 

9.  Not eating sugar anymore

10. Not eating baked goods 

11. Worrying about having cancer come back

12.  Worrying about wether or not I should even have kids now

13.  Having so many things ripped from me that I can't even think anymore.

14. The ability to think about having kids and being indulgent with thinking about being a mom is GONE!  That sucks.

So that is a list and that list doesn't seem so dark and horrible.  I must be forgetting something.  So yep, the hair gets to be cut short as a boy's in a few days and that sucks.  The non-sucky thing lately is that my fertility doc's were afraid my follicles were too big and they weren't going to get many eggs.  As it looks today, I have 10-15 eggs, that's awesome!  I am still going to divide them up, as D just isn't sure.  I am sure he would be more reflective if he wasn't in the middle of building a house, and trying to be there 100% for a wife that has breast cancer.  It is so messed up.  OH!  I just thought of #14.  My sis should be here soon.  D is stoked, he gets off of dish duty for a few days!!

Ode to the Popsicle

I just bought my last fruit sweetened popsicle box.  Strawberry, with yummy little chunks of berries in it.  Innately I know that I need to cut out all sweets.  I know that cancer feeds on sugar. End of story.  I have for the past month, forced myself to stop going to the bakery.  I went once and got a quiche.  That sucks compared to a twice baked almond croissant from my favorite bakery in West Seattle, Bakery Nouveau. This is a bakery-a-holics nightmare distance of just four blocks east from my home.  

I keep teasing and testing myself since I found out I have breast cancer.  This is how it goes in my head, "If I don't get cancer back, then I will never know if changing my diet mattered.  If I do get it back, then I will either have something to take out, if I don't take it out now.  How much do I want to risk, or how much do I want to eliminate all the things I can blame if it does come back."  But today, in Susan Loves Breast Book I read this golden tidbit, " It just illustrates that we have only odds, no certainty; to some extent, it's a crap shoot.  You have to just search your heart and make your own choice."  I can and do have the same philosophy with my journy with every freaking aspect.  This WHOLE DAMN THING IS A CRAPSHOOT!  Crapshoot, crapshoot, crapshoot.  No certainty.  No, noone knows if everything is going to be okay.  And that is the thrill of life.  Don't you see.  

We all seek and desire these limits.  Our limits.  I am just on a journey with limits I didn't want to explore.  But I get to explore them.  I get to see how my body will fight its good fight against breast cancer.  And it is my responsibility to do everything I can to put the right fuel in my machine.  Would I before a big run drink a milkshake and eat a popsicle.  No.  So, I get to juice lots of greens, and carrots, and ginger, and, and, and....  

Today, I felt awesome.  Until we got outside.  We walked up to the west seattle farmer's market.  I got up there and ran into my friend Marni.  In the middle of our conversation I started feeling dizzy and really weak and I had to leave.  We got home, and watched another documentary on the Golden Gate Bridge.  Then I thought I was okay to go the grocery store.  I get tired, really tired within about ten minutes of being away from the house.  I think its running into "normal" people and telling them about my experience and knowing that they just don't get it.  The feel for me, but no one knows unless you've gone through it.  If I wasn't such a people person I could see how someone could indulge in this separateness.  It could be lonely.  If any of you survivors are feeling lonely, I always find just talking to other survivors to be very empowering.  They remind me that its totally normal how I am feeling, and that always helps.  

My fear disappeared for a few days.  But I am scared again.  Although its not in my nodes, it still comes down to the, its a crapshoot thing.  It sure will be interesting to see my destiny.  This may sound grim, but its just life.  The bug that flew into your windshield didn't mean to, it just was on its merry little way, and bam.  Dead.  We all joke that we could die on the way to work in a car crash, or whatever, but its true.  I am a tenacious fighter, and I can totally hippie out and focus on those cells in meditation and I will start that this week.  This week, I have to start back on the hippie train.  Hard core.  But it is a crapshoot.

   

Day of Surgery

I am laying in bed typing.  I just gave myself my second fertility shot.  I am trying to not think about the bubbles I saw that I didn't get out of the needle.  I tried to, clicked the needle and then pushed the blunger thing up to make a little drop, or two.  But as I started injecting it I saw bubbles.  I was afraid I'd waste more medicine so I didn't do the whole bubble drop thing again.   Yesterday I got a little sick from the shot, 45 min. after the shot.  Within an hour I felt okay and normal again.  

I woke myself up screaming, "NO," last night.  My heart was racing and I was afraid someone was going to inject me with more medicine.  I really don't have much to say this morning.  I am not as ready for my Lumpectomy as I had hoped.  Although, I am not sure if you're ever ready for surgery.  I don't know how typing will be.  I might as my friend Gen to type for me for a while.  I wonder if I'll be able to extend my right arm enough to even type.  We'll well see.  I am going to go wake up my mother in law.

Simply Sad

All the masks I've worn in the past month have been put aside today.  My brain is numb, I can't remember little things, I feel fuzzy.  I feel like I am in a blurry tornado.  I am exhausted, yet ready for a fight.  Ready to learn more about myself.  Ready to see how deep I can dive.  Wondering if my lungs will collapse.  Although I know they won't.  I am back at that first week of feeling. Feelings of utter despair.  Surgery is tomorrow and I am freaked out.  

I will be admitted at 9 am.  At 11 I have a radio active dye injected into my right breast just above the nipple to help my surgeon locate my sentinel nodes.  If you are wondering what sentinel nodes are, my visual may help you.  I keep thinking of my lymph nodes like a bee hive.  And the Queen bee are my sentinel nodes.  They are the lymph nodes that get all the garbage dumped at them first, all the garbage that comes off my chest.  So the dye, theoretically would show the Doc where the cancer would spread to first.  They pull these guys out and any others that feel hard to the touch.  As hard ones, would indicate possible cancer.  They would then biopsy them and I will know within a few days if they have cancer.  

The thing that I have been bracing myself with all day, (I have to think of the possible bad outcomes so I am protected) is that they know of one node that was a few weeks ago 1.5cm's.  That isn't a small size.  So, if that isn't one of my sentinel nodes, that would possibly (all the possibilities of life-you gotta love them) indicate that the cancer has moved to other nodes and other places.  I read in Susan Loves The Breast that the scans I have done only detect chunks of cancer.  And when I remember my surgeon saying that they won't know if they got all the cancer, that is why I have to do Chemo.  Oh!  I just do a doozie on myself.  Putting stats together that may very well not belong together and I just have to reign in those horses.  So, you see, I am worried that the cancer is traveling around.  

The feeling when my Oncologist palpated those big node was a horrible icky, finger nails scratching to the tenth degree, painful and icky.  So, I want that thing out of me.  Today I called both my surgeon and Oncologist to confirm that they both know about that darn node and I want it out.  

My mother in law is here and will be for a few days.  I mistakenly told my Dad and my sis that I wanted them to come later, and today I realized I wanted them here.  This was a little too late.  I have been focusing on how sick I may be with Chemo, and wanted them here then.  What I didn't get until today, is that this is HUGE what I am going through, and them coming here is different than just coming to visit.  I have to stop worrying about inconveincing them but the fact is is that We all need to need each other now.  This cancer effects everyone in our families.  

My poor Dad finally brought himself to reading my blog.  The pain he must be going through, I feel for you Dad.  I can't wait to understand the depth of loving a child, like you love me.  Speaking of, not only have I been getting ready for surgery all day, I also gave myself my FIRST fertility SHOT!  I was able to do it, and it didn't hurt at all.  I am going to try to get some sleep.  I can't eat or drink anymore tonight or in the morning.  I am really scared to finally know what they can find out about this cancer.  It is doubly scary having something that they are unable to know exactly what this cancer is about.  The positive note, my statistics will help some new woman my age next year, with hers.