Stinky breath dreams

Last night I kept having dreams of running into people and scaring them away with my bad breath. I haven't gotten a toothbrush here yet, so I woke up and asked my nurse for a toothbrush and paste. Nothing is better than having fresh breath!
My Onc just came in and spoke with me. He said that if I am feeling more out of breath that I needed to stay in here. But like I told him, the best place for me to know if I am feeling out of breath is home. Since my toilet here in the hospital in just steps away, its hard to measure with that. He also said that once i get home if my legs start swelling more, if I get out of breath more, or if I start feeling bad to call him immediately. He has said a few times to me, that this could get worse before I get better.
So, I am letting D sleep (he went to a show last night and got home in the 2 amish) so I am letting him sleep, and then will call him around 9 to pick me up.
I am going to have another Eccho on Tuesday or Wed. to see if there is more fluid in there. I asked if I have to wait on this to clear before radiation and he said yes. So, it looks like I'll have more of a break than just a few weeks. And it also means that we can't even go to Vancouver island for a weekend trip or go home to Seaside, because I need to be around my doc's. I asked, because i've been doing lots of research on line about pericarditis, which is what I have. And asked my Onc if I could get congestive heart failure, and he said yes. That is scary. The reason I could get it is that if the liquid continues to increase it squeezes my heart more and that is what would cause it. But he said that if I keep them well posted with how I feel and with the eccho's this shouldn't happen. Because if more liquid gets in there, they'll tap it out. Which I am sure if there is more in there, I'll be begging them to do it. My chest is already so tight, and it feels so hard to breath, that more tightness sounds very uncomfortable.
No more hospital food, thank God. I am now taking away my earlier statement that I liked the food here. I think I was just excited that I wasn't going to have to cook it myself, go grocery shopping, ect.. That was it I am sure. Because all I want is oatmeal and eggs on toast!!

Down with AC

Yippee! I am so happy that I am finally done, for the rest of my life, with Adriamycin!! No more, and done with Cytoxan! Thrilled. I have been really emotional the past few days. I don't know what is about going to the PCC but I always have a little cry when I am done. This morning, I woke up and cried too. I have moments of disbelief still. I just can't believe it. It, being the simple, very simple truth that I got cancer. I no longer have cancer, it was taken out of me, but just the fact that it grew in the first place. I feel this crazy healthy person rising inside me, and I know that when I am done with this freakin' nightmare of a treatment, or as my Oncologist likes to refer to it, precautionary clean up, I am going to REALLY take care of myself. Not just as in food, but in every aspect of my life. I am going to make sure that I am happy and that I am living and doing what it is the way I want, because life is too short to not live this way.
There will be major changes. But honestly these changes have already begun, they're in the works right now. There is so much to change because of my growth. The growth I guess is what makes me cry, and made me cry today. Its painful.

I get to ask myself each day, "Is this the kind of woman I want to be?"

Washing my hair

I feel awesome today!  I missed the fireworks as I couldn't keep my head looking skyward for longer than a minute or so.  I was bummed, to say the least.  But today!  Watch out!  I have cleaned the stove, washed the cabinets, done the dishes, swept the floor, took a shower (even shaved my legs) and I noticed that under my right arm its a little numb.  That will come back, as nerves take a while to heal sometimes, but no big deal.  I put on my favorite white jeans and a white t-shirt and I am feeling summery!  D is sitting next to me on the coach watching a documentary on records.  This is actually quite interesting, these collector's keep talking about that they hoard all these records because they're into the music, but they have millions of records. Its about collecting, this film is hysterical.

D is still in his robe and I can't wait to go attack the city!  I want to go cut my roses and bring them in, but I want to talk to my Oncologist.  Should I not cut roses anymore?  What if I get stuck and my arm gets lymphadema?  How long after surgery should I wait to cut those roses?  If I was a careful person I would go cut them.  But I am not.  I am again, like a tornado or Tigger.  Did I mention I did all that housecleaning in a matter of minutes?  I am quick.  That is how I prune my roses.  So I always get pricked.  

The sky is shining and I am feeling good.  I am going to try to not think about my breast cancer today.  If I do, I will move on and pass it by today.  I need a break.  Tonight we are going to Vashon to watch this comedy thing.  We both need to laugh. 

The things you do

I really didn't realize all the things I do with my pec muscles until after the surgery.  Movements like washing my hair are not even an option, at least not today.  After surgery, I was wheeled back to the room where D, my Dad, and D's mom were.  I swear I was speaking coherently.   I was so thrilled and stunned that the nodes didn't look like they had cancer in them I just kept repeating, I guess they say over and over, "My nodes look good."  Or, "My nodes don't have cancer in 'em."  I was showing them that I wasn't even in pain, and I showed them once how I could move my arm around.  They all said, "No, stop!  Just relax."  Yesterday, D finally had to tease me a little.  Now that I am off the med's and he mimicked a very slow motioned voice say, "My nodes look good."  I swear I didn't sound like that.  haha.

I can't sleep anymore.  I know my cancer has put my into a very very uplifted cloud in the breast cancer arena.  But I am still a bit nervous.  I feel like I have the luxury of wondering if I acted to hastily in chopping my hair.  I have to just not care.  It will grow back and if I don't have to do chemo, then having short hair for a while can help me in some way.  Right now I am sick, sick, sick of my low back or kidney's whatever it is killing me.  I can't sleep and I feel like one of my massage clients that I love dearly.  She is always telling me that she has to wake up and take IBprofren for her back pain.  Although mine isn't going away with tylenol.  I keep stretching as best I can.  Keeping both of my wings close to my body and turning to either side in between typing.  

I can feel my port in my chest.  It just feels really tight under the skin.  I wonder if I won't need chemo and I'll just have this taken out?  For all you fellow survivor's out there that are tempted to write to me, and tell me wether you think I will or won't, please don't.  I am simply not wanting an opinion here, other than my Oncologists.  I am just sharing this time.  Usually when I ask a question here,  I DO want a response from any of you. But not this time.  I am also up because that means I am either getting closer to the time I start chemo, or not.  And so I am hoping like 60% of me that my Doc says I do not need it.  But then since my Triple Negative feeds on something, they just don't know what and they know that it responds the best to chemo like 80% of me wants to do it.  I realize these numbers don't make up the correct mathematical whatever you call it ( I was horrible in math) totalling 100%.  To me those numbers make all the sense, because this cancer doesn't make any sense.  So, these numbers do make sense.  

I am anxious that I am doing this fertility thing for nothing, and if my Doc says no chemo, I will be again, thrilled to stop this whole process.  I am drinking enough water to water log a camel, so my back isn't hurting do to that.  I just think its all the horrible med's that are finding their way out of my system and I have to remember that my body was just violated and maybe my back mmls were tensing up during surgery, although, I doubt it.  I looked, from the pictures pretty much out of it.  People are bringing by delicious food and we really appreciate it.  I need to get my sister to make a list and a calendar for you guys that have offered.  If I haven't responded yet, its just because there is so much to do.  And to worry about.  If I don't need Chemo, then I think we are fine with the food front.  But if I do, then I want my sis to make it kindof spread out, food coming on the night before chemo. The little planner in me has to find a way to work.

This little planner, The Dictator is what D called it jokingly the day I got back from surgery is trying to find control in the most ridiculous ways.  I am sure it was funny to the 3 of them (my Dad, D, and D's mom) with my slurred words telling them all what to do or how to find things.  One lesson was revealed to me during this time.  One obvious one, I spend entirely too much time worrying about everyone else's needs, even when I've just been operated on.  When I have the luxury of time, to go see a therapist when the Breast Cancer horses are reigned in, it will be a fun self journey to start putting Heather first.  I guess that is what having cancer does to people.  It makes you or should I say FORCES you to put yourself first.  There is a list getting started in my head, a new List of Positives.  This will be a post someday in the future.  

I just have to leave you all with this.  I loved with every cell of my being growing up in Seaside, Oregon.  The fourth of July fireworks there is unbelievable.  I have always loved and watched the sky this evening in delight and wonder and I know that at one point during our united show across America we can all take a second to send out a united Cheer and Thankfulness with me, that my nodes are negative and that Our Lives Are Beautiful.  Whatever our challenges are, we are so blessed to be Americans and to be alive Today.  Opening our hearts each and every minute to loving all of those around us, and not taking our lives for granted.  We are blessed to have the luxury of breathing. 

A basket full of decisions

I talked to my dad today about the decision I need to make about freezing my eggs.  He reminded me that the 40-60% chance that my kids, if I carry the genetic gene would as well if they got it, then have a smaller percentage from that number if they actually got it.  So...I have decided I am going to do it as I am not delaying my treatment.  Even if I was, the surgeon today said that biologically it wouldn't do a thing to my cancer, waiting a few weeks.  Emotionally it is an intense place to be, if I went there.  But I am not going to because I have to stay in the present moment and be still with my decisions.  

Tonight I spoke with my Oncologist.  He is an amazing man and he said that he has been working on compiling the numbers that would help someone like me answer my question.  The one in the earlier post, am I the 75% of the 10% since I am a Triple Negative?  He said there are no stats for this yet, and to go back to the known big number.  Leaving me at 10%, which is only a 9% difference.  The short term recurrence rate is 10% if I do the lumpectomy but long term success rate is the exact thing.  I am pretty sure I am going to go for the lumpectomy because I can always go to the mastectomy if the caner returns.  I have a 90 % chance that it won't.  D posed a question to me today.  If the cancer was in my leg with the exact same sats what would I do?  I didn't have to think, I'd keep the leg.  My surgery is scheduled for July 1st.  I have a few weeks to decide.  

Deal or No Deal Seriously

Met with the Surgeon today.  He helped calm me down with a few key questions and statistics.  I asked how soon after I get my mastectomy can I get my reconstruction done.  He said, "What is your goal?"  I said, "To Live."  Well then, if your goal is to live and if you were my daughter I would suggest not waiting for the whole process of getting reconstructive surgery, (its a whole process, unlike fake boobs) and start with your treatment.  I am wanting to give myself the best odds, and that is to kill this cancer as soon as I can.  He said because I am thin, reconstructive surgery is going to be a bit of a challenge.  I will have to cross that bridge when I come to that.  

He told me that Since I am so Young and Since its a Triple Negative I have (D and I again remember different numbers here, funny what stress does to our brains, we need to remember to bring a tape recorder) a 10-30% chance of me developing breast cancer a second time if I do a Lumpectomy.  I quoted the first surgeon's statement, "There is 30 years of research showing there is no difference in survival rates if I get a lumpectomy vs. a mastectomy."  He said that he disagrees with that as it really boils down to A Quality Of Life issue.  If I want to have the lumpectomy and risk getting it back and fighting this thing again I gave you my chances above. If I get a mastectomy I have a 1 % chance of getting cancer again.  

This is a no brainer, I am taking the deal of Mastectomy.  If my cancer was one of the other 3 that feed on things that they know about and if they could give me whatever drug to decrease my chances of getting it again, I would take that Lumpectomy.  But I am not going to risk this again.  If two months ago, someone said, "If you go down this road you have a 10-30% chance of getting it, heck even a 10% chance of getting breast cancer, and if you go down this road you have a 1% chance."  What road would you choose?  I choose to stick to the road that is going to insure my life for the next 55 years.  I am so young, and there is so much ahead of me that I have a larger amount of time that this could come back vs. a woman getting this in her 50's.  

Hard questions that I can only answer.  I am the one who will have quality of life issues, dealing with the pain of tighter tissue and restricted movement due to this surgery.  And if I go under, and they do find more and the tumor is bigger and more nodes are involved than expected, I would be getting the mastectomy anyways.  My Oncologist is going to call me tonight and talk with me about all of this.  I am interested to hear what he thinks.  Can you believe I am getting to deal with this?  Amazing.  The Why's are all around and I am ignoring them.    

++

Okay I just spoke with my Surgeon.  It is a 10 % recurrence rate for the lumpectomy without the gene bit.  Those numbers are high, much higher and I could be freaking out over nothing and warping my brain about things that will not matter.  But I need to weigh this all, and need to decide before surgery.  If I do the lumpectomy or the mastectomy either way I am going to be watched like a hawk for the next 5 years or so.  If a second cancer does appear they will catch it very early and then off with that boob!  What my surgeon did say is that he is concerned that I am under the age of 35 and that it is a Triple Negative.  

I have a question for my Oncologist now since he works closely with young woman with Triple Negative.  What I need to know is from that 10% (guys I got a D in Alegbra 2 with a tutor) you get the four sub-groups, the feeders on Progesterone, Estrogene, Her2Nu, and my lucky devil Triple Negative.  What are the rates of recurrence with women UNDER 35 and that have the Triple Negative?  Are we 75% of that 10%?  Phew...Right now I am leaning towards the lumpectomy.

If I get the lumpectomy and during surgery if they find more nodes than one that is cancerous the Surgeon said it does not changed my recurrence rate.  It isn't higher.  This is why I do Chemo and radiation.  The lumpectomy will allow me to be a better athlete, a massage therapist, and allow me to be closer to the person I am now.  I love to go snowboarding, ect.. Although I am not sure if I will be able to do that, if I fall will it cause me to have lifetime lymphadema?  I asked the Surgeon how will he know if he got all the cancerous nodes out, he said that he wouldn't know for sure, and this is again why I do chemo and radiation.  Another interesting thing he said is choosing a mastectomy gives me control with what I can have control with.  It is bringing my recurrence rate down to 1%.

 

The not so great news

We went to my Oncologist Doc for the first time today.  He is everything anyone of us could hope for.  If your child got cancer you'd want to see him.  He is loving, intuitive, blunt, witty, a good winker (reassuring both of us in a physical body way), loves what he does, words just don't work here.  He is the first Doctor that I felt like I could hug.  The first Doctor that I know I will know or be in contact with for the rest of my life.  The kind of Doctor that looks in a scared young married couples eyes and says with great certainty when asked by my husband, that he's heard that this could possibly not be curable, that, "That's bullshit."  

He is my Doctor.  I love it.  We can beat this.  But its not the Rosie picture we had gotten on Monday.  In fact this picture may yet again change.  I may wake up from surgery, and find out the story has changed.  Since I made a super long post earlier today I will be quick, if that is possible.  I doubt it will be.  D's three categorizes which are helpful for me to not get overwhelmed.  First its the tumor and the cancer in my body.  Second its Fertility, and Third its Genetics.  My cancer is to quote the Doc, " A nasty aggressive kind."  It has not been feeding on Progesterone or Estrogen nor on the Growth Hormone, Her2Nu.  It is a Triple Negative.  This is what my Doc is not happy about.  He is happy with the size.  We found out it is not as small as they had projected earlier.  It seems to be a 2.2 cm's.  This number could change in surgery.  It could be bigger or smaller, its just hard to say.  

When  tumors are over 2 cm's they like to refer to this as Stage 2.  I have stage 2 breast cancer.  This could change as well, and again we'll know more after surgery.   My Doctor likes that it looks like it is confined, but as we looked at my pics from this week together, he found a possible other site in my breast.  It appears that only one lymph node has cancer in it.  But like he said, "In surgery they may find that others have cancer and they may need to pull out globs of them."  I like that he said that, it was intense but a true statement.   He is saying a possibility.  Few doctor's so far have been upfront with us like this.  They've been more protective, saying the better outcomes, instead of saying, "Hey, this may be the way it is." This also means that if more nodes are involved and if it is spread out in my breast more, I will choose to go back and loose that boob.   There is good news, I won't have to take any Hormone drugs for ten years.  Bad news, the Cancer Doctors of the world don't know enough about this Triple Negative to know how bad it is.  My Doctor is actually one of the Docs that is actively researching, Triple Negative Breast Cancer.

Since my Cancer is so Nasty, I get to do Chemo.  This will hopefully kill any microscopic cancer cells that have entered my fluid channels in my body, from my lymph system.  My cancer is aggressive and I will need to have one of the most aggressive forms of treatment.  My Doc looked me in the eye and told me I am going to loose my hair, I will need to go wig shopping.  I wonder if I can make my wig out of my own hair?   My chemo will be for 20 weeks, give or take a week.  Usually people get sick for 2-3 days after the treatment.  Some people don't get sick at all.   Regardless, everyone feels like they were hit by huge truck.  Since I need chemo, I will need to see a Fertility Doc this week.  I am going to need to freeze my eggs for the day in years to come they tell me I am in remission.  As I do not want to have kids until I know I licked this thing.

On a fun note.  Those that know me well know that I have always wanted twins.  They run in my family.  But now, my baby's will be made in a little petri dish and then placed inside me.  I would guess.  Maybe not, but pretty sure.  So the good news is that my chances of having twins has now just doubled!!  Onto the Genetics part.  Since my tumor is so nasty and aggressive he is pretty sure that it is genetic.  Like 95% sure.  If it is, we will take both my breasts.  I am the kind of person that knows I cannot lie in bed hoping that the cancer doesn't come back.  Because when you have the gene, your chances are 50-60% that they will.  This also means that I will in my early forties start being bugged by my Doc to have a hysterectomy.  If I get cancer anywhere else in my body, even if its in my lungs, it will be breast cancer in the lungs.  

D wanted to know if we caught it early.  No, we didn't, but luckily its not that far along.  Yes, it is curable, and yes, I will fight a good fight.  We all wish for the best.  As every being on this planet, this is how we cope.  So that we can manage what is on our plates in this life.  If we couldn't pray, meditate, walk, smile, write, and hope this would all not be manageable.  All of life's challenges.  But my breast cancer is manageable. My brain has done a wonderful thing for me this week.  It has simply shut down.  I am simply in the Twilight Zone, in shock, and bless this place of being.  Blessed Shock!!