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 effects.....it 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.

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, anger....you 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 healing...to 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 hard..........like 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 concept...........so I am mentally putting a stop to it--or at least giving it one hell of a try!

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 positive....................wow.  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.

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 was...my 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 good.......................me.....entrails 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 plan...........surgery, 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.

shut the front door



'X' marks the cancer.

 I have been able to process the ER visit that triggered the waterfall of emotions.  I wasn't in the ER with a panic attack, but definitely had one half-way through.  It was the first time I had been in the ER where I wasn't listened to in regards to what I needed.  I feel like I am an ER veteran and when I say I need more of a certain medication, I know how my body works---this isn't my first rodeo.   I know it brought me back to being the "sick" person, having no control of what is going on---and having to wait that unbelievable amount of hours emphasised having 'no control.'  It took me a few days to process (talk about some PTSD), what for some would be a typical ER visit, but for me....a nightmare revisited.

I began taking Tamoxifen this past Monday, so tonight will be my 3rd pill.  I decided to give my ovaries a break and waited a few days.  I take it at night and haven't noticed any side-effects yet.   I have fallen ill with a terrible cold, I went to the doctor today and have ear infections and lots of chest congestion--so I started antibiotics and am hoping to be on the mend soon.  I am not used to being this kind of sick....it has been awhile, I dislike it very much.  Junk in my nose, in my throat, no voice, and #2 we don't even want to talk about....  I have enough essential oils in our bedroom to cause an asthma attack, and am hoping you can't overdose on green tea--because I am way over the legal limit.

I went to the pain clinic and they are going to up my Gabapentin from 900mg (where I tiered up to) to 1800mg--meaning 2 pills 3 times a day.  I will up it slowly, and if I begin to get too tired I can play around with when I take it, or stop taking it at a certain dose.  They seems very flexible and I am happy with our working relationship.  I am still on the treadmill like a champ and it feels great.  I am taking a hiatus as a result of the green stuff that flows so easily from my nose at this point, but am looking forward to seeing it again in a few days.

I am going to see another gynecologist tomorrow afternoon (if I feel up to it) and get my fucking pap.  Sorry Crisco Queen, but I need one and you weren't going to give me one.  Especially since I started Tamoxifen, we need to have a plan laid out for frequent paps, and keeping on top of everything---the last thing I need is another cancer diagnosis.   I will say, if I am laying on the table, legs up in the stirrups, and there is any mention of a cooking product I will walk out butt naked and thank them for their time.  Or maybe I should bring a can of Crisco with me and ask their opinion?

Internally I am dealing with lots of nuts and bolts..........they are floating around and nothing seems to come together....I have sincere trust that it will.  I trust the process.  (probably why I am such a birth junkie)
Life has been crazy for me, it is time to make some plans, do what I enjoy, and get it back---like how 'Stella got her groove back'.......but a bit different.  Ha, that even made me laugh out loud.

"the trust that others place in you is your grace."

what rhymes with Tamoxifen?



my "old" boob........photo by Patti Ramos


carcinogen rhymes, (well close enough). The American Cancer Society lists tamoxifen as a known carcinogen, stating that it increases the risk of some types of uterine cancer while lowering the risk of breast cancer recurrence.  The ACS states that its use should not be avoided in cases where the risk of breast cancer recurrence without the drug is higher than the risk of developing uterine cancer with the drug.

This post is the first of a few that I am hoping will be cathartic....  I had my survivor meeting with my oncologist and it was decided that I am to start Tamoxifen ASAP (rather than in August as originally planned).  Actually, at the meeting I was told to wait until August, then I received a phone call later saying that after they had discussed it they wanted me to start ASAP.  And they also wanted me to have a consult with radiology.   Prior to beginning treatment I was told that I wasn't going to be receiving radiation.....that is why I went ahead and had my tissue expander's filled (if I was going to be having radiation I would have waited)......but now they want me to have a fucking consult.  Looks like a loose end they forgot about.  It is scheduled for March and I am keeping my fingers crossed, that the recommendation is for no radiation.  This was like having the rug pulled out from under me................out of fucking nowhere.

So tamoxifen was the shoe I was waiting for to drop............it just brought to the surface so many things that I had tucked away.  Pregnancy, surrogacy, ovaries, uterus, etc.....my tumors were estrogen positive so having my cycle back is just one more way for tumors to grow.  Starting tamoxifen will suppress that and hopefully I can make it the full 5 years with minimal side effects............though endometrial cancer is a possible side effect and I can't even process that right now.  We discussed pregnancy and when I asked if there was an option of taking something to help suppress the estrogen that comes along with pregnancy (like I did when I was getting shot full of hormones for egg removal prior to surgery) I was told "you just let it ride." Meaning the doubling of the estrogen is just a risk I have to take............................

Also my oncologist discussed the possibility of me having a genetic disorder that predisposed me to early breast cancer (and other cancers). My BRACA tests were negative, but apparently my oncologists thinks I could have another one, which if positive, my embryos would have a 50% of being positive as well...........(I won't be able to be tested until many hoops are jumped through for insurance, and as of right now I can't even remember which ones she wants to test me for).........................................

So what does all this come down to? Once again I am a ball of tears.  Ever since my (what was supposed to be 'empowering' survivor appointment) I have been reminded that my life is scary and that there is a good possibility I won't be able to carry a pregnancy, and now even more of a possibility that we won't be able to use the embryos (surrogacy) we have waiting for us in Reno (50% is too high if I am positive) and I feel defeated, deflated, robbed of an opportunity I would give anything for.  When I think about all of it together I can't even form words, I just wail and sit on the floor waiting to catch my breath.  This is something that I will post more about when I compose myself, when I have more information, and when I can see to type through tears.  Today I just cried for 45 minutes while on the treadmill.....I think a lot of it is because I am exaughsted from last night.............................

Topping off this shit pile...............I had to go to the ER last night.  I was having chest pains and was getting dizzy...since I started a new medication we had to be sure that everything was okay.  I had one of the worst experiences ever..............I was on edge to begin with but checking in at 10:15PM and getting home at 5:00AM was unbelievable.  The fucking hospital didn't have someone to do the CT---like no one was scheduled, or the person walked out, and as a result we had to wait---with no other options and no one relaying information to us.  The nurse that did my IV blew my vein....and after wiggling my IV forever my hand went numb and there were shooting pains from the IV site to my hand.............and the worst bed side manner to date.  I felt railroaded and vulnerable--not to mention a little freaked out because of the chest pain.  I had a great doc (who I have had before) but she couldn't make up for how uncomfortable I was whenever he came into the room..............Then when I was finally able to get the CT the dye blew from the IV site and went all over the left side of my face and scarf.........so I had to be wheeled bald (vulnerable) back to the hospital room.....I was in tears at this point.

As I sit in bed I am still having chest pains, though these I know are from anxiety.   I am sick of this feeling. I know I am tired and everything will probably seem and be so much better tomorrow, but tonight I feel defeated:

I feel like my body was doing its job, and now it is being punished.
I am terrified that one medication that can help defeat cancer, can cause cancer.
I am scared I won't be able to mother on my terms.
I worry I won't heal.
I am afraid I will have panic attacks forever.
But, I hope for the future.

And in the very near future...........I have a Herceptin infusion.

I have a blister and I love it.

lady parts at the aquarium

**caution, this post contains mentions of lady-parts and lady-part functions**

Yesterday I was a hot mess of lycra, sweat, spilled water, an I-Pod cord wrapped around me, swollen calves, numb toes, and a blister the size of a quarter..................but I did 4 miles on the treadmill.   I walked, sometimes speedily.........and yes I had to hold onto the handles/arm rests (wasn't really sure what they were for before, but now I know they are there to keep my unsteady fat ass from falling to what probably would be a horrible face-burn of treadmill and raw embarrassment--mostly because if I did that I would feel the need to blog about it and that would be awful).  They are also there so I can dance to the music coming from my I-Pod and when I get a little crazy, I can hold on for dear life.   I have defeated chub-rub while working out.............I wear the tightest workout pants I can find (chub-rub eliminated from legs and lady-parts; check). 

Today I was another hot mess and............I did 3.14 miles on the treadmill, I know--hell just froze over.  I had done 2 miles day before yesterday---so in the last 3 days I have done 9.14 miles...........more than I have done since July............  Though I have eliminated chub-rub from the legs and lady-parts I have developed it elsewhere.....now that 'anti-monkey butt' powder I saw at Target makes a whole lot more sense.  But life has taken an upward turn that I wasn't expecting.  The neurontin is working--I mean, 2 weeks ago I could barely make it from the bed to the living room in the mornings................I was falling asleep at 4am and hoping to sleep, taking pain medication, and feeling like my body would never catch up with my brain.  Now I am falling asleep around 11pm and waking up at 8am or 9am.  I am not waking up with panic attacks, and I actually "feel" sleepy at night--I think it is the mix of neurontin with the ativan I take at night--a perfect cocktail if you ask me.

My body is starting to like itself again, the cherry on top? I started my period today....or what I think is my period.  I haven't had a cycle since September due to chemo.  I have been told that I probably wouldn't have a cycle for a year or more after chemo....if ever.  It has only been today, and who knows exactly what it is happening--or if it is even my cycle.........but it looks like chemo didn't fry as much as we thought---at least that is my hope.  I have a meeting with my oncologist tomorrow for my "survivor" plan and I will find out more then (like estrogen levels and if I will need to start Tamoxifen, the estrogen blocker, earlier than August, etc...).  It is fucking icing on the cake if you ask me---2 weeks ago I just wanted to get some shut-eye........now I am walking and bleeding like crazy, the joy I feel is overwhelming.  I now have a knot in my chest from holding back tears of joy---of astonishment that my body can work, that it remembers what healthy feels like, I no longer feel like my body shut down at the mention of cancer.....it just hibernated (to save the good stuff) and now it is stretching in the sun.....coming back for round 2. 

I am still waiting for the other shoe to drop, for me to wake up and feel ancient again, to have the shooting pain, the unexplained burning, the anxiety running through my body.....but I have been at the bottom, I was born to survive....even if the pain comes back, I know it is possible for me to have days without it--and I will hold on to that.  I think lots of things are in play, working together at this point, allowing my body to heal.  Food as medicine, nutritional supplements, exercise, sleep, massage, yoga, reiki, acupuncture, positive energy, and love--lots and lots of love.

Me: I think I am losing weight.
Scott: Yeah, your stretch marks look different.