radiation - day6

Happy Saturday-
I neglected yesterday's post for the sheer point of forced relaxation- I felt like I got my ass kicked.

Had a normal radiation session at 9 as usual - I let the techs know about my ER visit and they kind of looked shocked. They told me I did the right thing.  My mom drove me so I wouldn't be by myself.
I was just loving the new independence of driving by myself, when this crap happened. Now I am a little worried to go out alone. Currently I don't have a cell phone so I think I should get one now.

I had a nice day in with Melody. It is FREEZING outside, I would love to go for a walk though. I'm just reallllly tired. I can feel the burns starting to set in. It's like internal sunburn feeling right now. It stings a little inside too.

I called Dr. Cairoli at Virtua and left a message with the nurses to call me about the days previous event--- they called back- I didn't hear the phone ring. Phone Tag back and forth frustratingly to where I finally got to speak to a nurse and Dr. Cairoli was out until Monday. But Phyllis was in. So I explained to her the whole story and she was really helpful with talking about it. She didn't like at all the fact that it was so all of a sudden and not a gradual thing, and also suspected it may be a severed nerve ending somewhere. But no one knows. The hospital in Mount Holly was able to get all the films from Toms River and reports and stuff as of yesterday at closing, so Dr. Cairoli and Phyllis will have a nice project to look at Monday.
Until then, I was told to keep Tums on hand in case it happened again- it could be digestive as well.... ???? My esophagus is also in the radiation field as well, says the nurse. She also told me if I thought I was tired now, to wait until I get further into radiation....and that it's not a walk in the park.
But the nurse said to me that I should step back and realize what my body has been through- chemo, then surgery and then radiation - my body keeps trying to heal and then something else happens to it. If my body reacts - it's for a good reason. There's lots of factors here. It's just crazy. Not to mention that I'm stressed out a lot. I'm trying not to be, and meditating and breathing and typing here helps immesnely. Anxiety is a side effect of Tamoxifen too. Anxiety in someone who just learned to not be so anxious. One step forward, two steps back! hah hah!

If I breathe deep, I can feel a little achiness inside my lung. It's definitely my lungs. My lungs do not like me very much- between all the pneumonias, weird ER visits for breathing problems, weeks of bronchitis in my 20s, my lungs have put me through hell. I don't blame them after the fact I put cigarette smoke in them for 21 years. But that is neither here, not there. Good thing I live in the part of Jersey that's overhwelmed by ocean air and not factory air at least.
I can feel it though. It's there in my lung.

We had a nice dinner at mom's house last night and she kept the kids for the night. Mark and I had a really nice night watching a movie and laughing and hanging out sans a crying kid. It was a little selfish moment. lol. Originally I had wanted to go up and see a show, but there was no way I was leaving the house feeling like I was. No way. It started again though as ther night went on...... I got a real mild stabbing pain as I was lying in bed and I stayed still, meditated, and wound up falling asleep surprisingly. My body was exhausted.
So it never got back, but I felt the initial feeling again last night.
I'm just tired. Tired of living like this in pain or with side effects these days- it's like- ENOUGH. I would love to complete one simple task without feeling sick or not able to move 100%. I do it anyway, but this crap is getting old. I need to get a pair of sneakers and get the hell out and walking and see if it makes it go away.

The Tamoxifen I need to discuss with Phyllis on Monday. These side effects aren't good. I'm not making peace with them....nights especially. I don't sleep because I am either anxious, awake and sweating my ass off, freezing with teeth chattering, or having a nightmare. This drug also gives you a beard and morning sickness. Yay. And I'm wanting to refuse to take any more drugs- not even to sleep. I'm so sick of pills.
If this lung, rib, crazy thing is because of Tamoxifen, I am forced to make a decision to either start a new drug or go off of them all together and live a life of being open to new cancer cells if they decide to visit me. This is the crap I think about constantly. My mind is a constant stream of thought and conversation these days. I have so much to always think about and remember.
I'm not me on these things. Not me at all.

On the upside, my hair is growing back so nicely and I dyed it lavender yesterday too. I like it :)
Melody loves her new comfy pillows and fell asleep in my arms 2 seconds after this picture was taken during dinner at Mom's. (see fox news channel in background-lol). I am now able to hold her gently. I love that.

Radiation #7 is on Monday and it'll be the first time I'll be rocking 5 in a row. eek. Better days are ahead.

love
xo
b

Taxol #2

DAY70

2nd Taxol today.....
It wasn't such an early appointment this time- 9am- which made it bearable.
My mom drove me and Azalea came along. It was her first experience seeing her mother in a chemo room, and with other cancer patients. Mom took her down to the cafe for breakfast while they started my IV so she didn't have to see it.
All the nurses were really excited to meet Azalea. They all loved her name.
We had a full chemo room with a Vietnam Vet with Non-Hodgkin's lymphoma, a fellow breast cancer mama, a woman who had rectal cancer but the chemo didn't make her hair fall out, and a cute elderly lady with colon cancer. My mom is a 17 year survivor- and the little old lady and the lady with hair were both nurses, so my mom had a good time talking to them. She loves to talk about the hospital work days with someone who understands the lingo. Thankfully for that same lingo, I am able to follow House a lot better since I've grown up hearing about intubations and tachycardiograms and pulseoxes. Or is that pulse-oxen?
Oh well- We had a laughing bunch today-
I love meeting the different people. I still have yet to meet someone around my age in these rooms. All of them are at least 20 years older than I am.

Half an Ativan, Benadryl- - nicely tired for the Taxol infusion. The ride home was nice.

I came home and wanted to sleep, but my mind was going a mile a minute and despite the home heart monitor's readings of a normal rate- I felt like I was getting an anxiety attack and felt like crawling out of my skin. Just jumpy. Maybe it was the Dexamethasone. But it felt weird.
I suspect crashing really hard tonight.

Mark drove me to the chiropractor after I got home from my appointment for a good adjustment. I find these really help the chemo experience. Between the stress and the drugs - your back gets pinched, not to mention the annoying as hell leg, knee, finger and hand bone jingles.
I feel much better after visiting Dr. G and I am able to relax a little bit better after seeing him, which makes for a nice happy environment for the tree drug to flow and go.

Still feeling anxiety a little bit today.
I go back to work tomorrow since I felt awesome last week. But i am not making any assumptions.
I will do my best to manage this and do my job and get things done.

........

So as I sit and view this orioles/yanks game- with Baltimore up by 1..... I have the urge to sleep and create at the same time. i cannot sit still so I managed to get it out by typing- and I painted my toes shades of green. Thanks Mel :)
I ironed out my ever evolving hexagon sewed pieces- then I got antsy with that and needed to do something else.
So now I find myself banging on little lettered keys, enjoying the sound of 57 words per minute on plastic.

Mom took Melody tonight while Azie and I stay home and Mark rocks out in Seaside tonight. The quiet is welcome after last week's sick run from mom so she couldn't take the baby. Mom thought she had West Nile Virus, but now she's better.

Need to sleep, paint, draw, sew, paint, sleep, draw, pencil sketch, ya ya ya..... Bone pain creeping into my legs and back right now.... YAAAA!



what the hell is the matter with me? lol. I need to go to sleep to wake up early for work tomorrow. I hope I can pull it off.
ttfn
xo
b

solar flares of massive proportions......

DAY55

Apparently in my dreams I have cancer too. Last night I was in an old house I once visited that had been turned into a bar in Mercersburg, PA. It was called the Mansion House. I was there with Mark and live music was being played and I was so happy to be out and about- I don't even think I realized I had cancer till someone I knew stopped me and said "Jesus, you look sick.... How's the cancer? You look terrible".
Thanks.
lol. I can't even get away from it in my dreams. Time to end that.

It's a major solar flare in space right now that's causing hallucinations, vivid dreams, ghost sightings, etc.
I'll blame it on that.

This week has been bittersweet with the end of AC and the return to finally feeling somewhat normal. Although lately if I do so much as vacuum the floor, move some furniture, or deal with a 2 year old for an hour, - I'm whipped. I need a nap. And finally, I'm agreeing with my body in napping and lying down to rest when I can.

I also have a cough that won't go away- it's not anything that has gunk, or respiratory infection--- it's bothered by air conditioning, and intense outside heat..... it just won't go away.
Reading online has me seeing that other women going through the same chemo have the same thing.

I go back to work tomorrow for the week- I hope I can cover some hours without draining every bit out of myself. I hate leaving people hanging like that. I'm just getting more and more tired and every day is different.

I do my best to conserve as much as I can, and Mark has been such a help with dishes and laundry....and the kids....

I was also really psyched to finally sit down last night after Melody went to bed. Azalea and I watched Edward Scissorhands and I sat down....to draw. I hadn't picked up that pen to sit and draw since any of this happened and it felt good to create something again. I hope to keep doing that. Anything that makes you forget cancer is a treasure.
it's still a work in progress. I am noticing too that what's in my head is different now as well- more attention to detail and taking my time...... I have so many art projects I am itching to start - it all depends on how I feel though. It elevates me so much. I do miss painting, sewing and tie dye so much. It just expends a lot of energy I need to conserve right now.
I have another blog that I started a whillllle ago- but at the beginning of the year, I was DETERMINED to blog a new piece of art every day. So much for that project. I tried, I really did..... Obviously I wasn't able to keep that up- the art suffered a little- and now I'm hoping to start the creative process again. It heals my head. And heart.
I still need to go back to that blog and post a reason why it stopped.

Off to the farmer's market in a little bit, then maybe a trip to the craft store to get some earring supplies with Azie, she got her ears pierced and we're going to make some new fun earrings for her to wear now that she's healed!

thank you :)

DAY 41.

the words

we are all made of stars..............

DAY38

1:30PM
I let fear get to me....
I was anticipating and manifesting a crappy evening of Neulasta garbage, and I shouldn't have done that. Mind over matter, yes, but deep down inside I was really fearing of a recurrence of last time's trip around the porcelain throne.

Not this time.

Right now I still feel like a pile of achy bones being split open lengthwise, but last evening was much better.
I was able to relax until Mark came home around 10.  I just started crying after being alone with my thoughts for 4 hours when he walked through the door. I needed a hug. Then Mark and I got to talk a lot about how we were both feeling about everything. About ourselves, what God is, this stupid cancer's itinerary, and just stuff in general. With 2 kids, it's hard to get that time in to really speak it out and listen sometimes. When he got home last night, I was in bed watching TV and we just hashed it all out for a few hours. The kids were at my mom's so it was a rare occurrence to have a conversation where you don't have to be quiet or watch what you say. lol. It was a bloodletting I think of anxiety, crazy energy, being scared, and communication that needed to be had in our marriage at that time. And that talk released what made me feel like shit the last time. FEAR.
I stored Fear, my enemy, inside where it hid.
No fear in me, no way. I am strong!
Ha. Yeah, right. Who the hell am i to say that?
I am scared, but not afraid. Big difference. I think if we make peace with what life is throwing at us while we can, the fear goes away a little bit more.
It's ok to be scared. I'm staring into death's eyes for Christ sakes....

I slept so well, the headache wasn't nearly as bad as this time, but the next morning I'm still feeling it. Sweating a lot, and splitty bones.
I wanna chop my knees off.
I am tired.

......

4:46 PM
Mom took the kids again, and Mark has left for work. Melody hadn't had a nap and was taking great delight in being a wee beastie. Azalea, perfect child as always, doing the best she can.
I'm laid out and watching as much TV as I like, hydrating, since my major trip outside watering tomatoes took the last bits of energy I had left. The house is quiet and as much as I need the break, I still miss everyone.
The bones are gettin' worse and I'm not having much fun. Bleh. High grade nausea too.
I need a stand-in skeleton right now.....

Night folks~*
xo
b

I love my families

DAY34

I had the best time at Stonehenge. The family that surrounds this place is something special.
Just so healing. Music is a huge part of my life. Spending the weekend with the kindred musician souls and such good friends, live music in a great creek side setting in the hills of Pennsylvania.
I also witnessed Mark's drummer Neil find his wedding ring after losing it the night before 20 feet out into the flowing  pebbly creek. Amazing to see. Knee deep after 10 minutes of slow searching , he looked down and it was right among the rocks. All those people walking out there, and it stayed put.
A round of applause, a hug and kiss later and it was magical.
I had an ok time with everything except for a small moment in the morning where I just was hit all at once with a headache, and sounds of people talking and sunshine really started to bother me. I felt really strange.
Everything feels strange lately- I'm in a perpetual state of out-of-body experiencing.  So if I ever happen to be a conversation with you, please pardon my spaced out-ness if it seems that way. I am listening, there is just a strange data processing delay in the neurons somewhere.

I needed to sit down - and be in a  quiet place and i needed food as well. It was weird.About a half hour of that until I felt better. Thanks Elise :) I think it was a culmination of myself being out of my house and around so much amazing people. Energy so deep and so lush with rich hearts, it was physically overwhelming.
And my lovely mama to be Julia gave me the cutest powder aqua colored wig. It makes me feel like 80s Kate Jackson if she was Martian. I also got a gorgeous necklace from my friend Sean that has all kinds of cancer energy busting rocks in it. awesome.

Words just can't describe the overall weekend though. Blissed out and it just felt like the biggest and best hug ever.



I can do without the crazy number of Pennsylvania drivers who snail it down a left lane. 2 hours of that and I was happy to be driving in Jersey at that point. Jesus.



Tomorrow is Chemo #3.
I'm really not looking forward to it at all right now. The aftermath, all of it. Good thing Mark's work nights this week all end early.
Mark is coming with me and it's an early appointment so I'll be out early.
So I'm hydrating like crazy and happy to have Melody back, even though she is acting like an imp right now.

I am tired from the 4.5 hour drive home, very grateful for a shower and soap right now and I'm going to drink yet more water and fall fast ASLEEP.

Big day tomorrow.
I go to sleep tonight with a heart swelled with gratitude tonight.
I love y'all. :)
(hi rocco!)

chemo eve #2.

DAY21

Chemo #2 tomorrow. with the first dose of Neulasta.
I almost feel like chemo #1 till now was sort of a vacation period- no neulasta, and it was 3 weeks between #1 and tomorrow. Now they go to every 2 weeks.
I'm not gonna lie- I hear this Neulasta shot sucks. And I'm a little tentative.
Last chemo- I got to go to the chiropractor the day after- and I think the adjustment really helped since my only major side effect was being tired. The nausea was there too.
I had enough energy to pull off 9 hour workdays most of the time, too. I felt great up until these last few days where walls just came and bonked me in the face outta nowhere, no matter what time it was.
I guess it's just a little anxiety- but my belly's doing somersaults and I just feel a little on edge.
My legs are also itchy but I think that's the chemo working on me not having to shave my legs since I noticed the hair is also falling out on them too. A plus!
I had a great weekend where I got to see my niece, my sister Bethany and brother Jon- I miss them and wish they lived closer sometimes.

My mom is coming with me tomorrow.

I also made it a whole day of wearing the wig at work, too. By the end of the day, it just felt like a tight hat.
The new blue hairdo arrives Thursday!

Got my snack bag packed and I even snuck in some organic oreos.
A little nervous. I'm going to lose myself in some graphic design now and get some very well hydrated sleep.
Boring post today. It would have been more exciting I'm sure if Bruce Hornsby hadn't canceled tonight's show. Boo. I was looking forward to that for weeks.
Next time! You too, Neil Diamond!
The rollercoaster rides again tomorrow ...

xo
love&light
-b

(i was at this show! - and i still remember it's awesomeness!) yay music, yay bruce, yay musical family .........
!

almost real.

DAY9

Worked a full 8 hour day today. Besides a nagging headache and being tired when I got home, it went great. I feel great.
And it was cloudy out so I could go outside without the fear of burning myself.
:)
And the air conditioning is fixed too.
It's been thoroughly cleaned to the tune of double the estimate, too. yikes.

My neulasta shots arrived today and I need to keep them in the fridge.
Each shot costs $3,000. Gratefully my insurance covers the entirety besides the copay.
I got 6,000 dollars worth of pharmaceuticals in my fridge. Rite Aid Scarface over here. I'm the only game in town to keep infection down.

I'm going to be absolutely vain and self absorbed right now- but I am going to miss my hair. I love my hair.
The thought of all of it in a pile on the floor scares me a little bit.
Up until now it's been hot and itchy, and I keep telling myself it'll be nice not having hair in the summer.
It's just an attachment, I keep reminding myself. It's just hair.
I cut it all off up to my ears about 14 years ago when i decided to get rid of an head of sad dreadlocks. lol. I was 21. I clean shaved it bald about an inch above my ears on down a few times as a teenager too.
I had no problems then, I won't have one now.
G.I. Jane.

............

I still think with a grey moustache, I'll look just like my dad.


I couldn't let it fall out in clumps though, that makes me think of the Leave it To Beaver episode where the Beav was supposed to get a haircut and his mom gave him the money. But he spent the money and Wally gives him a haircut instead. I laugh when I think of that episode. Good ole 1980s Nickelodeon. My hair would look like that if I just let it fall out. No thanks.
I'm in control here.


I think once the hair goes, then it finally becomes WAR. I got the damn haircut for it.
Silly that I have a giant light up peace sign on the outside of my home ...while at the same time I have a savage thirst in my pirate gullet  for murdering tumors.
rawr!!

Ok- Vanity conquered.  ..... I'm out for blood.

Rest! What a concept!

DAY3

Today I feel pretty alright.
I woke up feelng very beat up, but once I got up and around, I got my bearings and felt a lot better as the morning went on. Coffee still tastes good. I can feel the steroids leaving my body. I do not like them.
My mother took Melody today to give us a break from the terrible twos and Mark really kicked ass at finishing up some cleaning that needed to get done.
I love my daughter very much, but the peace I got to sleep today was precious. Thanks mom <3 She also kept her awake all day so she would sleep for me early since Mark is leaving at 6:30 tonight for work. BLESSING! lol.

I also had to spend the morning making sure another MRI was scheduled. In the routine tests before chemo, they found a small spot on my liver that could well easily be fatty tissue on my CAT scan. My oncology nurse said that was a normal thing for those things to show up. So it's back to the Skrillex machine June 5th.
I think it's nothing but the fact I accidentally ate a handful of sunflower seeds before my scan when I forgot about the fasting rule, as well as all the anxiety medication called Malbec I had during my month from discovery to diagnosis. lol. So I'll rule out any tumor on my liver right now. Not me. It's just wine and sunflower seeds.

I'll be ok. Just to make sure though, I took a nap earlier with my Padre Pio blessed handkerchief on my stomach.

I've been fascinated with Padre Pio since I was a kid reading the "Book of Lists" in our house. Now I am not a religious person per say, but I absolutely believe that some people walk this earth as healers, mystics, blessed people and channels to the other side. The ones that fly around crowing how much they are a part of the other side are charlatans, IMO. This is not confined to any school of thought, religious symbol or prophet....Jesus, Padre Pio, Buddha,...whatever faith or belief system, if the the practice is  based in good and love, as well as acceptance of everyone...that's spirituality for me. I"m not a fan of those who claim to know what religion "GOD" is.
I also believe our biggest powers of self come from within. I know some of my scripture following friends would disagree with me and say I'm wrong, but we're all not the same as humans, and Jesus knew that too.
The power of prayer is HUGE to me though- collective meditation and directed good intentions. Amazing, the powers it has. Good intentions. Love....Transcends all religion. I love you guys so much :)

Back to Padre Pio, he was a cool priest in Italy that recently became a saint- he performed miracles, healed, appeared in 2 places at once and also experienced stigmata, where the wounds of Christ appeared on his hands every Friday I beleive. You can't fake stigmata. lol. Padre is the real deal. My grandfather actually got to attend one of his masses in Italy in the 40s in WWII, and has some awesome photos. Very angelic. My family is big on Padre. :)

My appetite was really good today- I was starving for a good part of the day, craving greens,  and my veggie juices. I feel a lot better after i eat 'em. I'm starting to feel disgusted at certain things too=- It's like being pregnant all over again!
Feeling that sensation too like I ate something really hot and it burned the inside of my mouth is also another chemo side effect.

My boss stopped by today to give me a hug and say hello with a present, and I got a sweet surprise from my sister and her BF Brian today in the mail. She sent me a handpainted mug she made that said "Love" and a really awesome cardinal pillow which I am going to bring with me to my chemo appointments so it'll be a nice reminder of my dad being with me <3
If he was alive, all he would tell me to do is "REST".
He was big on that- so I am doing the best I can. For someone who has constant thoughts running through my head , and can't sit still - rest is a learned behavior.
I'm learning now that it's ok to heal and miss a few hours in the day, and to have faith that things will get done and I don't have to do them all.
It's great.
Still learning though.

I hope tomorrow copies today in how I feel physically. <3
More onward into breathing Good In, Garbage Out.

xo
b

Let the green bombing begin......

Today starts the real first day of literally the rest of my life.
After the diagnosis Wednesday, I found myself - arms outstretched and freaking out, angry and not knowing the whole full picture of what lies ahead. Enter 3 days of shitty food and red wine to ease the soul. I'm not into the whole idea of Xanax or anti-anxiety medications- because they have no effect on me.
Today we turn the corner and start bombing the hell out of cancer cells with the good food. Got myself a nice new Ninja 1200 food annihilator for better juicing than my regular crappy juicer. it makes all kinds of stuff. and thank god for Lowe's credit. lol.

Loaded up on a bills worth of organic veggies, kombucha, and good stuff for my body to stop this cancer shit from growing. Really gonna cleanse it all out. I wish I had done the master cleanse in the beginning of the year in hindsight.

Thoughts are starting to infiltrate my bubble- It was like flipping a switch that turned off the old me, and turned on the light to see this path ahead of me. A summer with no hair and no sun, wondering if chemo is gonna make me feel like shit, and I have the sisters who have done this already giving me advice which helps so much. I saw and lived with cancer patients, but being one is totally different.

 Still have yet to do the abdomen CAT scan and full body bone scan on Monday. I have to drink this crazy barium stuff for one scan, then go get injected with radioactive isotopes for the next one. 2 in one day. I'm gonna glow in the dark Monday night!
Tuesday I need to go back into work for the first time since I left for lunch and never came back.
Wednesday is the heart scan in Toms River and then off to Mount Holly for the 45 minute MRI. More radioactive stuff.
test test test.
My pathology still hasn't revealed what type of cancer cells these are..... and the tests will show the doctor just how far the cancer has spread past the lymph node if it has, as well as making sure my heart and bones are ok for the chemo.
All these tests, driving 50 miles each way - you think a lot. You cry. You get mad. You sing at the top of your lungs. (I've been doing all these drives and tests by myself since my mom isn't home yet and Mark is home with Melody during the days) .
Just exhausted today. Thankfully Mark comes home early from his gig tonight so I can finally gets some time with him.
My friend Tatum stopped by with some really pretty flowers and a hug yesterday, and my best friend and virtual sister Beth came to stay with me last night. We watched Mommie Dearest and laughed and drank wine and it was just so good.
I'm weirdly not looking forward to going out next week. Something seems safer inside for me to stay home, but it's the last night out before chemo so.... bring on the Old Bay!~

xoxo
b