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.



 

I'm as good once as I ever was

Greenaway Girls--+wig

Well folks, I did it.  I went to a training in Seattle, for two days in a row, stayed awake the whole time and survived!  Monday was a pretty harsh wake-up call--doing two days in a row like that may be a bit much for my body.............I was drained physically and emotionally..........but it was more than worth it.  It really lit a fire under my ass for returning to work.  I just can't wait for my body to cooperate with my brain and make it happen!
My appointment at the pain clinic went well.  I am starting Gabapentin  (Neurontin) tonight. It has been shown to help treat painful neuropathies, and nerve-related pain--which is going on in my legs, feet and ankles.  There is a laundry-list of side effects, most common is being drowsy--I will begin to take it tonight and do that for 3 days, then take it at night and in the morning for 3 days, then go to 3 times a day.   I took my first pill a few hours ago and so far so good--I am not extremely tired, no chest pain, it is a little harder to breathe but I think that is my asthma and not the medication.  I am doing my best not to put all my eggs in one basket (already did that....they rendezvoused with Scott's fellas and are in a basket in Reno) but I am really hoping this medication helps my legs.  We are planning on starting another medication in a few weeks as well--we just can't do more than 1 at a time--this way we can divide up side effects.

food as medicine

While in Seattle for my training I was fortunate enough to stay at a friends apartment--she isn't there on the weekends.  There is something about being in a foreign space, just focusing on yourself and the task at hand--it's rejuvenating.  It is the same sense of urgency to succeed I had during my residency at grad school.  I flew to Vermont, stayed on campus, and the only thing I had to focus on was what was going on there--nothing for work, personal life at home, etc....  When I am at trainings I prefer to stay in a hotel so I can mentally focus.  It was really comforting to be back doing what I love, exhausted or not.  I hardly slept both nights....mostly because I was so excited to be doing 'something'............I was up bright and early, got ready, drove to the training, stayed awake and participated (loved every minute of it!), and was so excited at night (like a kid on Christmas Eve) I was bursting and couldn't sleep.

I am finding it fascinating how my brain 'shut down' during treatment.  I know that a lot of it was chemo brain--the amount of time I can't recall is pretty scary, and recounting the stories of my hospital stays and the week post chemos makes me shutter.....  It is taking longer than I would like for it to come back, I am feeling more witty....but I still interchange words, spell things wrong, and blank-out mid sentence.  Waiting for my mental and physical to start to hold hands and work together---I think they are both mad I put them through hell...............

Ain't baking no cookies here...

I had a great week, despite Scott having to help me to bed last night and me being unable to shower because my legs, ankles and feet were not reliable enough to stand on....... but, overall it was pretty good.  I met my new primary doc and he is super, a welcomed change from my recent meeting with the Crisco Queen.  I went on two walks, made contact with my employer and cleaned my house--done and done. 

I went to a monthly doula meeting that I sorely missed during my chemo treatments and showed off my "boobs" in the back corner of a tea house.  Whenever I leave those meetings I am energized and it reaffirms what I do in life.......there is something about being surrounded by amazing, passionate, driven, and supportive women that share the energy you do that soothes the soul. 

And this weekend I get to take a course taught by Penny Simkin in Seattle.  If you are unfamiliar with Penny Simkin, you should Google her, she is the inspiration for what I do for a leaving, her work and passion lit the fire under my ass to jump head-first into birth, babies, pregnancy, and doing whatever I can to support women.  I have taken a few classes from her, and try to attend any conference where she is speaking.  My course is on Survivors and Childbirth (survivors of abuse and sexual assault) and I can't wait!!  It will be the first time that I have commitments two days in a row (and ALL day long)....I am nervous that I will be so tired I won't be able to function....but on the other hand I am almost positive that my pure excitement will overrun my tiredness.

And on the Crisco note..............a friend of mine thought it should be tested before I tried anything.................she is a brilliant writer and captured her experience in writing....thank you Tinneca!

CRISCO FOR A DAY by Tinneca

Today I heard from Dori

A very dear heart friend
That her gyno told her that Crisco
Could bring certain 'problems' to an end


Apparently it smooths things out
and helps to make things supple
So I had to look into this Crisco thing
and do it on the double!


The details I'm unsure of
And the facts I really don't know
So I just tell my silly self...
What the heck! It's just Crisco!


So I headed to the pantry
for that well known round, blue tin
Grabbed it out of the cupboard
NOW LET THE ADVENTURE BEGIN!


Was I really about to do this?
Spread Crisco on my 'parts'?
Well, if you know me
The answer is YES!

And this is just where my story for Dori starts...

I picked up that big container
full to the brim with that thick white muck
Opened it up...It looked so harmless...
Oh sheeshh...What the fuck!


So I'm standing in the kitchen
and dropped my drawers to the floor
Put one leg on the counter...
then my ROOMATE WALKED IN THE DOOR!


I stuttered to explain myself
And then I had to laugh
I just sighed and stopped my blushing
Scooped a gooey handful out
Slathered it on good and thick
Pulled up my drawers, gave her a wink and walked right out!

Oh Crisco, Oh Crisco
I know it sounds so crude
But let me tell you ladies something...
I've NEVER felt so smooth!!


Now Dori, here's where it gets interesting...
No longer an 'R' rating
Because I knew, Crisco and all...
My boyfriend would be home waiting!

So did I mention it to him?
Or do you think he noticed?
(somewhere in the back of my mind I'm thinking "Should I share this??")

Well...

He noticed right away!
And boy it was so smooth....
That when he tried to get a little bit frisky...
The slickness threw him across the room!!


So if any of you doubt my story
Try it and you will see...
you nether regions will smile with glory
Just like they did for me


Of all the crazy things we'd do for our brave, courageous friend Dori...
I can say with all my heart...
I never thought Crisco would be part of my story!

Oh Crisco Oh Crisco!!
WE LOVE YOU DORI!

--Written by Tinneca (love you lots!)

Well, hello world, how've you been?

Today I walked a mile and a half, with Scott and the dogs outside--and I didn't eat a celebration cupcake! 

There are a few things you should know about me if you don't already:
 #1 I don't like outside (this is something I work on because Scott LOVES outside, he would live there--he once told me he wanted to live in a tree house........)
#2 I get embarrassed when I sweat in public (also something I have worked on because I sweat all the time now....)
#3 I haven't worn tennis shoes for 5 months.  But I fucking did it (as I pat myself on the back and scream a mini 'wahoooo!').  My whole body still hurts, but the sunshine was just too much for me to ignore, so out I went.  I am sore as hell now, and I can't wait to do it again tomorrow---probably on the treadmill, but done and done.
#4 I was afraid to start working out again because I am in pain, because once I start I am afraid I will stop, I am afraid I will put too much mental pressure on myself to "lose weight" rather than "be healthy", I am afraid I will defeat myself

I finally have an appointment, next week, for the pain clinic--that is one step closer. I had to postpone going on any type of antidepressant until this meeting--because the one that was suggested by the Crisco Queen doesn't work with the estrogen blocker I will begin in August when my Herceptin infusions are complete--the last thing I want is to have to be 'weened' off of one medication and put on another.  So after discussing it with my oncologist we have decided to wait, go to the pain clinic, and have them prescribe one that will help with the swelling, hot flashes, sleeping, anxiety, numbness, etc.... that also works well with whatever is decided for the pain.

I have stopped throwing random crying fits like a 2 year old, so I feel like that is a good sign.  I still feel a heaviness in my chest that creeps up my neck.........like there is an impending doom that I can literally feel coming.  We all know there is no impending doom, and more likely than not no blood clot in my chest to cause such pain--it is a straight shot of anxiety. Anxiety that is different than it was before.  It no longer begins in my feet and works its way up slowly through my legs, my abdomen and into my chest.  My feet, ankles, and legs are already busy being in pain....so the anxiety has made a nest in my tissue expander chest......nestled right in there next to my heart.  Tugging on heart strings has a whole different meaning when they are busy trying to suffocate worry and anxiety---their new next door neighbor.
It seems unreal to me that I have been through so much..........now I am a fish out of water, trying to grow legs, some lungs, and figure out where the hell I ended up.  I have ended up in a place where the world seems foreign, but slowly I am becoming familiar with my surroundings.  I am excited to continue using my new found legs and whip my ass into shape--mentally and physically.

I am relearning how to approach the world everyday..........

"Well, hello world, how've you been?"