Sunday, March 27, 2011

if it is so easy, you do it.

Tomorrow is my first of 33 radiation appointments.

I wasn't expecting to feel super great tonight, and I don't.  But I honestly wasn't thinking I would have the same butterflies as I did before chemo, but I do.  The anxiety is flowing pretty freely through my body, I have spent the day cleaning and keeping myself busy so I didn't have to think about it too much.  And now comes the part where I have to lay down and that damn darkness creeps up and then my brain goes into overdrive...

And the craziest part? Tomorrow will be a piece of cake. I know this. Research shows this.  Tomorrow I have tests, a simulation, a meeting with a nurse, and then my first round of radiation. It will be about a 3 hour appointment (compared to the 45 minute ones I will have starting on Tuesday).  The first few times (at least) of radiation they said I probably won't have any side will be a strange contrast to chemo....where I was knocked out within 45 minutes and didn't remember the next 7 days or so.  It will be a piece of cake physically....but mentally I am still not sure--I am hoping to keep the anxiety (of what could happen later on) at bay so I don't break into a fit of tears when the nurse is talking to me, or bite someone....who knows.

I appreciate that my body has had time to heal, I just hope it was enough to make a difference.

May 11th can't come fast enough.

Wednesday, March 23, 2011

your body has a memory...

"Your body has a memory"
In the last year I have filled my body's memory with some bad shit--surgery, chemo, pain, trauma, depletion, anxiety, depression, name it.  And now that it is trying to get itself back to balance, I am going to slap it in the face with some radiation--what a horrible 'get well soon' present.

Radiation won't mess with my brain (at least in the same way) as chemo.  This is both terrifying and magnificent at the same time.  Chemo was unbelievably trying for everyone involved--particularly my body, but despite the pure devastation it caused, my brain was able to escape into a fog--leaving my family unsettled, but me in a safe-haven of sorts, not having to deal 100% with what was happening.  I think if I did, I would have been scared to death.....

Radiation will be different. My boobs that I have grown very attached to are being attacked--again.  My right breast is once again the problem child--this time the consequences are yet to be determined.  But I am determined to take the fucking high road here---I have 33 days of radiation.  Though we don't know what it will do physically, I know what I will be doing mentally.  I have a great care team for radiation (naturopath, lymphedema physical therapist, acupuncturist, massage therapist, all my support people and my radiation oncologist) but the one major difference between chemo and radiation is going to be that I will be able to care for myself mentally.  That was a battle I lost during chemo--I wasn't there mentally, I couldn't even read a book, let alone do visualizations and focus........hell I couldn't even have a coherent conversation and remember it a few days later.

Radiation will be different.  I am going to meditate each day of treatment--that is, at a minimum, 5 days a week for at least 45 minutes.  That is a pledge to my body that I will foster the mind/body connection for at least 45 minutes a day, devote that time to my own freedom and strength.   After all, my life was getting back on track prior to this radiation hiccup.  So to increase my chances of healing internally, while fighting with a sun-burnt boob in April (crossing fingers that this will be my worst side-effect), I plan to:

-meditate for at least 45 minutes, 5 times a week
-read 1 hour each day
-continue all supplements (antioxidant or not) and anything else that my naturopath and I decide on
-continue Tamoxifen
-keep my heart open to love (translation=doing my best to not shut people out and feel like it makes it easier on them...)
-do a minimum of 2.5 miles, 5 times a week on the treadmill
-wear my 'sleeve' as directed (which now is everyday)
-be in bed by 10:30pm: reading is okay, but I need to be in 'relax' mode......unless there is sister-dancing to do, which then it can be extended
-blog on bad days, when it is fresh. SURPRISE I usually try to calm down before I blog...though I do occasionally blog while seated on the floor in the bathroom with the door locked

Despite this plan I have created to help deal with my anxiety and stress about radiation--I am still having panic attack symptoms, especially late last week and into the weekend.  I sometimes feel fragile and it comes out of no where--it shuts me down. My body feels like it is being weighted down and I can't breathe, I start to cry uncontrollably and usually end up under the covers or in the bathroom sitting on the floor--chosen for the closeness of the kleenex and garbage can, and the toilet doesn't hurt either.....usually vomiting/diarrhea is in the horizon.
I wasn't feeling 'right' when I was waking up, some of it because of my nasty cold, the rest probably because of stress.  I had a great 'energy' meditation session and some stuff moved around, haven't been the same since (except I am feeling better today, after some more work).  But the stuff that came up was messy, I haven't dealt with it, I am still working on it, but it is walking through mud, you lose a shoe...and you want to get the hell out of there.

I had a panic attack in a dream and woke up having a panic attack, grabbing Scott's arm and gasping for air--tears already streaming down my face, before I could even think of crying--all of this is why I am going to make radiation different--tragedy is everywhere--me labeling and feeling like radiation is one, is such a ridiculous I am mentally putting a stop to it--or at least giving it one hell of a try!

Sunday, March 13, 2011

fire & gasoline

This was right before I went in for my mastectomy--what you see in my face here is how I have been feeling the past few weeks.
I have found some of the pieces of myself.  It has been 12 days of searching and I found some.  The past 12 days have been full of panic attacks, research, appointment after appointment and moments of complete meltdowns where it took all of my energy to control the bouts of tears, shaking, and gasping for air that came along with all of this.  Scott said "it feels like the cancer has come back"--we were in survival mode, and that isn't necessarily when you think the best--you can't soul search when you are in 'fight or flight' mode.  I asked opinions of people who are very dear to me, I got the broad spectrum of responses I was hoping for.  There isn't anyone who could tell me what to do, but I just wanted to know that other people were thinking about it too--that I wasn't in this alone.

The fear was overwhelming--fear of having to do another "treatment," fear of having to stop tamoxifen (this fear is still taking up a lot of my head space right now), fear that something was missed, fear that I was inadequate in advocating for myself throughout this whole ordeal, fear that I could get sick again, fear that radiation would do damage I couldn't deal with mentally for the rest of my life, fear that I wasn't strong enough to do this, fear that I didn't think that I should do it, fear that I had to face the fact that cancer can come back.

I did break, I did hide under covers, I did drink too much wine, I did have panic attacks, I did get taken over by stress....

I have decided to get radiation.

I don't know where or with who yet, but I will begin radiation treatment at some point in the near future.  I have met with two radiation oncologists (and have two more appointments this week with other providers) to decide where I will do treatment.  After my appointment with the first radiation oncologist I was confident (in what my gut was telling me) that I was not going to be doing radiation.  The research wasn't there and there wasn't enough evidence to support the decision in favor of radiation.  After my appointment with the second radiation oncologist, I felt my gut move and was leaning toward radiation.  The reason for the switch? Evidence.  The first radiation oncologist told me that my tumor margins were negative--which is wonderful! But in the meeting with the second radiation oncologist it was pointed out that part of the margins were  I missed it, and I have read my path report over 1,000 times. Scott missed it, my oncologists missed it (or decided it wasn't important enough to talk about), but it was there.  Positive margins=evidence.

So unless that was a misinterpretation of the report, I will be getting radiation. I am seeing 2 more radiation oncologists and now, armed with this information (and other questions) I will be able to make the decision for my care.  I am still scared about stopping Tamoxifen, well 'scared' seems like an understatement....I choke up and can't breathe when I think about it.  I have this visual of cancer running rampant and sucking up all the estrogen in my body........we are going to discuss an injection that can shut my ovaries down during the radiation treatment, to help decrease the amount of estrogen in my body.......but it is no Tamoxifen.

My life has gotten complicated again.  I retreated into survival mode and shut down.  I shut down to where it was too exhausting to talk on the phone, where all I wanted to do was sleep so I could shut my mind off, to where "going through the motions" didn't even seem like a possibility--tears always on the brink of falling.  I know that sometimes I am too hard on myself and I know that mentally I can't ever "shut it down" and relax--I am always on overdrive, and even if I am "relaxing" in bed or whatever I am mentally on the go.  I have a new naturopath and she is going to work with me to calm down mentally--something my whole body will thank her for I am sure.  She is also going to help me get through radiation, along with acupuncture, massage, reiki, and a shit-pot of supplements.

Life is complicated.  Shit happens.  In the grand scheme of things I am one of the luckiest people I know--I am surrounded by love, I am safe, I am alive, and I am a fighter--this is just another round--and I am ready for a knock-out.

Tuesday, March 1, 2011

I broke into pieces

There was a time where I started to see life come together, where I had a focus, things were on the right track, and I was pretty sure that the light at the end of the tunnel wasn't an oncoming train..................that time was 8am this morning.  By 9:30am I felt broken.  Broken like I had split into two and my entrails were entangled with pieces of who I personality, my friendships, my love, my being....all lying on the floor.   When I reached to scoop them up it was impossible to get everything back where it was before, and I am sure things were left behind. Like a woman who spills her purse, you always leave a lipstick or something lying under a table that will no longer call the purse home.

I broke like I did when all of this started, when my survival instinct fails and all I can do is cry and hope it gets better.  Broke to where hugs hurt and I would rather be alone than have to put others through this pain that is so obvious in my face.  When I explain why I broke you may think this is an overreaction.....I probably would too.  But how I felt mentally prior to my appointment was just so great, I was back to me...the me I hadn't seen in a long time, someone who was happy, and nearing the end of this fucking journey.  I was me who was enjoying getting into shape, eating right and feeling and all.

having my centinal node injection before my bilateral mastectomy
This morning I had my consult with radiation oncology.  This consult was done as a second thought by my oncologist (while creating my wellness/survivor plan they realized that I had never had one, so I should probably check it off their list) so I called and here we are.  Radiation hadn't been in my treatment plan, with only 2 lymph nodes positive after surgery and my oncologist said that I wouldn't need radiation.

lets stop there.

I should have asked for a referral anyway.  I have always stated to be your own advocate, but here I just let them spoon feed me that statement.   But one person can't know everything, I honestly feel like I failed myself a bit, I know it would have been the same as what I heard today, but mentally I would have been in a different place.  Earlier into treatment I was all-ears to information, open to everything ("show me the research!"), demanding appointments, and would have been in a better place to hear what I heard today, and if I would have felt so inclined I would have added it to my treatment, chemo, herceptin, radiation, tamoxifen--it would have been planned, I could have prepared for it--or at least understood that it was an option to consider, rather than not even on the menu.

but I didn't.

so I broke.

I was going into the consult thinking the radiologist would just say that all my bases were covered and he wouldn't recommend radiation.  I was wrong.  All I could muster after hearing him talk was mumbly words and to ask for referrals for second opinions....I was stunned, angry, and felt defeated all over again, something I am becoming too familiar with for one lifetime.

So my case falls in a "grey" area with the research.  I am a research oriented person for many things, such as treatment, then I just add in holistic care because it is so important to me--but if it can harm me (such as Western medicine stuff) I want to see the research before anything comes near me.  That is what I did for surgery, chemo, my decision to take both Herceptin and Tamoxifen---research and I will make my decision.   This isn't so clear with radiation. 

I had 2 out of 6 lymph nodes positive for cancer.  The recommendation for radiation is if you have 4 or more positive lymph nodes.  The 1 to 3 fall in the grey area........the research doesn't show a dramatic statistical difference in those who receive radiation with 1-3 positive nodes.

But I had a Grade 3 tumor and I am young.  Those are the reasons the radiologist said that were against me and I may want to consider radiation.  Also that even though only 2 nodes were positive that is still 33% positive, because they only took out 6.  If they would have taken out 20, and still only had the positive 2 then that would be different.

There are other reasons to get radiation if you have less than 4 nodes positive..........but I don't have any of those in my case--so it is just those listed above.

Being young works for and against radiation.   Because I am young, and hopefully have a long life to live I would have to live with the side effects for a much longer period of time (including a small part of my lung not working due to being "killed" by the radiation), lymphedema, skin burning, and I don't even want to talk about the tissue expander's and breast reconstruction shit that can be messed up with radiation.  But "for" radiation, there can be cancer cells that are there and they can multiply, I have a long lifetime for recurrence in my nodes.

So the ball is in my court to make a decision because it is not clear cut here.   But I wonder, when does a radiation oncologist not recommend radiation?  Isn't it always "better" to be sure all the cancer is out of the area.................I ask that in a smart-ass tone, but I feel like it is truthful too---no cancer, that is the best kind.

I don't know how I will come to a decision, when it will happen, or if I will be able to live with the decision I make.  All I know now is I feel broken, so if you see a part of me, please pick it up....I still hope to put it all back together.