Status

It's been difficult to write lately. Partly because of stupid Google. I like the Blogger app! I don't like the unfriendly desktop site. Google WILL NOT respond to questions about app. I'll hopefully be transferring everything to Wordpress soon.

I'm 3 months out from surgery and STILL have a seroma. I have lymphedema that's out of my control. I have implant exchange sx scheduled for Feb. 22.

My memory is shot. I have a "mental health evaluation" on Jan 4 to see if I still qualify for disability. Apparently stage IV and lymphedema don't count. I seriously think of something, turn around and poof...its gone. I feel so stupid!

Chemo brain

http://www.curetoday.com/community/barbara-tako/2016/12/chemo-brain-it-doesnt-always-go-away

Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it. – Here Comes the Sun

https://herecomesthesun927.wordpress.com/2016/11/14/dear-every-cancer-patient-i-ever-took-care-of-im-sorry-i-didnt-get-it/

Death with Dignity

http://www.goodhousekeeping.com/health/a41117/jenny-cooper-cancer-death-with-dignity/?src=nl&mag=ghk&list=nl_gga_news&date=112016

Movies

I spend a lot of time going to movies. I prefer the "cheap" theater with the $5-6 movies. I prefer to go alone. I prefer to sit in the very back row because I like to keep an eye on people but many times I'm the only one there.

I was checking what movies were in at the cinema and saw one called "Christine". Checked the info and as soon as I saw the name Christine Chubbuck I knew I was going. See, I read about her a while back. She was a news reporter back in the 70s who committed suicide live on air. She read a news story & then said : "In keeping with Channel 40's policy of bringing you the latest in 'blood and guts', and in living color, you are going to see another first—attempted suicide." She then put a revolver to the back of her head and shot herself. Now, back in 1974 the news station didn't always record the broadcasts & the VCR wasn't available yet. But, just recently it was discovered that there is a tape of her final broadcast. The station owner's wife had it. It will never be shown. I'd watch. I watched Budd Dwyer. Turns out there is barely any footage of Christine doing her news show. When I was watching the movie I obviously knew the ending but oh, how I wanted to be there in 1974 to be her friend & to hug her. She was broken like so many of us are & after so many times of being let down sometimes it is impossible to mend.

https://www.google.com/amp/s/www.washingtonpost.com/amphtml/news/arts-and-entertainment/wp/2016/02/01/christine-chubbuck-the-1974-washington-post-story-about-the-anchorwoman-who-killed-herself-on-live-tv/?client=safari

There is also a movie called "Kate Plays Christine" that also was shown at Sundance. I haven't see it yet. Funny, two movies about Chubbuck at Sundance.

Budd Dwyer:

https://en.m.wikipedia.org/wiki/R._Budd_Dwyer

There is a video on YouTube showing him shoot himself. Very sad.

Another drain

Ok, trying to type my posts and then copy them to the blog...

I see PS tomorrow (today now) to have a drain put back in to drain my back. She gave me the option of have the fluid removed my syringe every week or a drain. It hasn't filled up as much since Tues so I guess we'll see what she wants to do. As for the procedure she'll do it in the office with lidocaine. No biggie.

My new motto!

Back fluid

More red this last time

Seroma

Been here before. This one is in the area on my back. Weird feeling to have that fluid sloshing around in there.

JP drain

Oncologist & Faslodex

Well, I had a post all typed out and then pow...gone. So trying again. Fast.

Saw onco on Tues. Got Faslodex inj. Didn't hurt much at all this time. Port still works. Chemo room still sucks. No scan for 4-5 mos.

Funny

Scar

Scar across my back & you can see the drain tubing under the skin just below my scar. PS said that she only use a small area of back skin to repair my skin in front. She used it where my skin was thin. She got good coverage for the expander from my lat muscle so the expander is under that. The left over skin from my back had the top layer taken off and is buried as part of the new boob thing. 

Looking for new blog site to use that has an APP!!!

Apparently Google is no longer supporting the iOS app. Wondered why I kept getting kicked off. So annoying to have to type this using the web browser!!!
I need to be able to transfer everything over to another blogging app.

Great day!

I felt really good today (well, since it's after midnight I guess I should say yesterday). I felt happy today. Went to Rumsey St. to check out Site Lab for ArtPrize. It's a street with an old Catholic Church and old houses that are used as art venues. I loved the smell of the old buildings & the old floors & wallpaper. I so want a house of my own.

I had some sharp pain in my back in the afternoon. Not sure if it was from the stitches, the drain, or the muscle. The area around my port feels swollen an has been bothering me. I hope the port is still ok. My right arm is great! No elbow pain like I normally have & seems like less swelling. Left is still up but not painful.

Shopping

I had a good day so I went online shopping. I got shopped Curediva and saw this awesome cancer planner set:

As messy as I am I like to be organized & this has section that look like I can get all my treatment/surgery/lab stuff in one place.

Then I got an email from Mindyana for a 10% discount for breast cancer awareness month so I got one for me & one for a friend:

Then they sent me a 15% off code and I got a couple other gifts for friends.

Then I got an email from The Greater Good for 30% off an item. 

For me

For friends

And I donated to Haiti.

The Greater Good site donates to different causes & offers many fair trade items.

Post-op appointment

Got that itchy tegaderm tape stuff off! Whew!!

PS said surgery went well & that I have a nice lat dorsi muscle because the was able to cover the entire expander with it. That's good because the skin was still thin but now the expander is under muscle & skin. She only had to use a small amount of the skin from my back.

(My hand is on top, got in the way as I was making the pic)

I have a small dark area near my nipple & PS explained that the cautery knife burned my skin there because it was so thin so she had to stitch it up. Not a big deal to me. 

Drains are still in and I expected that. Output is still around 70mls. Itching is thankfully under control. Pain is much much better.

Nurse was stripping my drains (you hold the drain near where it's inserted and use thumb & finger to pull the liquid down towards the bulb to help prevent clogging by clots). She said the dr likes pus things and she (nurse) likes to get clots out of drain tubes. Ha ha! My kind of people!

Pain scale and eewww!

I saw a pic of the pain scale in a brochure  today. Those things crack me up! I should make a collage of all the different Faces of Pain. Ha ha!

Anyway, here it is...

Sitting here typing this I have 0 pain. But if I move from my pillows it will be 4 and when the norco kicks in I'll be feeling a 3-4. I must say I have had moments of frowny-almost-tear-inducing pain. The meds do help now that I know to be proactive in taking them. 

Ok, now for the eeeeww! I'm a science geek so I find gross things super interesting. This bit of yuck has been hanging out in my drain bulb all day. I have my post-op appt tomorrow so I'm not supposed to empty the drains before I go...

Wow!

http://www.refinery29.com/2016/10/124446/cancerland-champagne-joy-interview

Disability paperwork

I got a packet of forms from Social  Security while I was in the hospital. I had to fill them out so they can determine if I can continue to receive disability. It seriously took me hours to fill them out! I had to list medical personnel who know about my conditions over the last 12 months: name of clinic; name of Doctor; address, phone; first visit; last visit; upcoming visits; ER visits; hospitalizations. Whew! I did that for 4 doctors: oncologist, breast surgeon, primary care, plastic surgeon. I even put my physical therapist on there. Oh and I had to sign the form and have a witness who knows about my medical condition sign also. I asked my mom. :-)

Then I moved on to the medications section...I had to use an additional page for all of those.

Then I had to list a typical day's activities like get up, have coffee, shower, etc. they wanted to know about hobbies. There was a list of things like dressing, bathing, standing, walking that I had to check if I have problems doing them. I checked lifting with arms, concentration, memory, and a couple others. 

Do I use medical equipment such as canes, walkers, braces? I wrote about compression sleeves/garments.

In the work section I said I can no longer work with animals as I have for most of my life because of the risk of cellulitis & issues with lifting. 

Whew! Mailed the thing last night. I included the form about stage IV cancer and axillary lymph node removal.

I should have copied the pages from my planner for the past year. Been rather busy. Maybe I need a job down at the hospital. ;-)

My back

OMG! The itch in my back is crazy! I removed some of the plastic sheet/tape & it pulled off some steri-strips but incision is healing. I've had a "new" pain in my back today. Feels like a pulled muscle so I'm not sure if I did something. Started hurting last night when I bent over to pick up something off the floor. I finally gave in and took norco & when they didn't work I took a Valium.

Can't wait til Friday for my post-op!! I'm sure the drains will stay in. They are still around 70-75mls.

Arm movement is good. The intense pain occurs below the expander but that's getting better. Overall feeling pretty darn good!

Oh how I hate drains!

Still draining pretty good. Nice gag inducing, tube shaped clot this morning. Yuck. But that's the reality of the JP drain. Blood, serum, tissue, clots. I can feel the tubing under my skin on my back and there's a "squishy" feeling when I lean back on my pillows. My back has been itching like crazy. My side was itchy last night but in the numb area so I couldn't determine exactly where the itch was located. 

JP log

How I keep track of meds. N=norco, V=Valium, A=antibiotic

Drains pinned to my shirt

Flap incision and drains

Surgery went well

I'm home! My surgery started around 8am on Thurs. I was in recovery for a while until a room was ready for me. Whatever they gave me for preventing nausea was amazing! I was able to eat the same day. Docs who checked on me yesterday and this am said everything looks good. I have 2 drains and an expander on the right side along with the lat dorsi flap. Pain hit about an 8 last night but now that I'm home I can stay ahead of it with norco & Valium. My nurse today suggested that I set an alarm to take my meds since we don't feel pain when we are sleeping but it can be awful upon waking. I'm sure that's what happened last night.

I had to have an IV in my left wrist because my port couldn't be used since it's on the right. Nurses wouldn't take out my catheter after the fluids were stopped because it's hospital policy to have IV access. So my arms ballooned. And that annoyed me. I'm trying to be so careful and make sure I'm compliant with the sleeves & the people at the hospital totally ignore what I'm trying to tell them. I plan to bring it up with PS when I see her for my post-op appt.

Happy it's over! Now if I can avoid infection we can get the expander filled & the implants placed.

Funny

As I was going down to my room I was happy that I'd be able to have the window open tonight. Then I caught a whiff...got stronger as I walked into my room. I said "Ugh, skunk! Are you serious?!" Then I realized as I was holding my phone I had pushed the button for Siri. He replied: "Yes, I'm not allowed to be frivolous." Ha ha! Too funny!

Surgery

Lat dorsi flap on right side scheduled Sept 29 at 7:30am.

What no one tells you

Important to have someone especially after a surgery to listen to instructions when you're still drugged up!

Words

Today I was gathering papers to copy to send to my Medicaid caseworker. I was looking in my oncology patient portal for info to show that I get the Faslidex injections every month & came across this...

 

Now, I know my situation. I have known since U of M when that doctor so cruelly told me that I have incurable cancer. I saw the initial staging reports. I read. But to see the words "stage IV" and 

"palliative" was hard. It made me sad and shaky. I'm lucky because stage IV is the metastasis to distant organs or bones. It has not gone into my bones or organs yet. I'm happy about that. I'm just sad because I'm afraid. I'm afraid and I feel so alone.

Cancer has shattered so many of my dreams.

ER on Friday

Cellulitis once again. IV abx but no hospital stay. I'm getting tired of this!

Red shoulder

A specific kind of pain

So...my right shoulder started hurting yesterday afternoon. I assumed it was from using the weight machines the day before but in the back of my mind I was screaming NO NO NO NO! Sure enough around 11pm I noticed the red spots forming.

I've felt a little "off" this week. I had my injection on Tues. And it's about the time infection shows up. I'm so annoyed.

I took a 500mg cephalexin that was supposed to be for my dog.

So incredibly annoyed!!!

Surgery is a go!

Saw plastic surgeon yesterday and we are going ahead with the lat dorsi recon on the right side. She said I'll get to keep my nipple which kind of surprised me but is pretty cool! Just hope for no expander infection!

Results

Of the scans were good. Everything is stable.

Got my Faslodex injection and it was painful!! Like, almost crying painful. It felt like the nurse was injecting hot lava or something. Still hurts but was better for a while with ibuprofen.

Scans again in 4 months.

Scans 8/25

Scans went well yesterday. I stopped in at chemo area & asked if a nurse there could access my port. Then I went over to radiology for my nuclear med injection for the bone scan. Then to CT. After CT I had to wait for a nurse to come and deaccess the port. Then I was free until bone scan at 1:30p.

Bone scan tech asked if I'd been having rib pain then she asked about my foot. Oh yeah, it's been jacked up for a week. I wonder what she saw? Oncologist appointment next week for results; pending in portal til the 29th.

Rib pain

I've been having pain in the usual area on my ribs but it seems worse since the weekend. I'm sure it's because I wore my bra night & day during the camping trip, and I slept in the ground. But...it worries me so, because I'm me, I searched "rib pain breast cancer". The first link was this:

http://lisabadams.com/2013/10/01/black-suede-boots-one-year-ago-today-found-metastatic-breast-cancer/

I almost cried.

Not wallowing in suckery

I've really been trying to stop with the pity parties. It's just crazy that I'm emotional now and wasn't when I was diagnosed. It's been almost 4 years. I am lucky. I realize people get tired of my medical drama & they go away. The thing is I need to talk about it. Or I guess I can just write here. I want people to be educated about breast cancer & lymphedema.

Wallowery! ;-)

Guys, I know sometimes it's hard AF. You wake up & you're like "today's the day I'm giving up coffee then you have 3 coffees & it's 10 am & you're still laying in bed scrolling on Instagram & watching cat videos & you tell yourself you're going to write or create something but all you do is make 3 eggs & the shells fall in you think: fuck it: texture. And the baby's crying or you don't have a baby but the husband is being an asshole or you wish you had a husband or a girlfriend or whatever but it's a beautiful day so you think you'll ride your bike but then your bike tires are flat because you haven't ridden in 3 years & do you even own a bike anyway? So you lay in bed sticky from breast milk leaking from your boobs or coffee you said you wouldn't drink that spilled on you & you scroll & look at everyone's perfect happy lives & you start pulling your eyebrow hairs out (nervous habit) because you wonder how you'll catch up? You wonder what you've done that's so remarkable? You wonder why you suck the most & literally no one else does.

Well, I feel you. I call this wallowing in your own suckery! Don't wallow under any circumstances. Don't be an asshole & wallow. Or wallow for like 5 minutes but then snap the f out of said wallowery of said suckery & fuckery. You don't suck. You are remarkable. Yes, you, you sticky, bikeless, coffee breathed human. You! Remember- social media is 99% bullshit. Remember- this is not a race. Remember- we all think we suck sometimes. Remember- we do suck sometimes but that's called being a damn human being. So don't wallow in it. Just get up and put your non-asshole pants on & do something to get out of your head. Or don't put pants on. 

Tag someone who doesn't suck. I love you!!

#dontbeanasshole #dontwallowinyourownsuckery

Effects of radiation

Weeellll, yes! No hair in right armpit; healing rib; marking (AKA tattooing).

http://www.healthline.com/health/breast-cancer/radiation-effects-on-body?utm_expid=.bq4wAkkBSjeddGcB8ufP1w.0&utm_referrer=http%3A%2F%2Fm.facebook.com%2F

Pretty urns

I saw some gorgeous urns at the funeral home. It's funny that my first thought was about smashing them. Take me to a mountain and smash the thing!😄

On a positive note...

Over the past couple of days I have spent lots of time with my 9 yr old nephew. I hadn't seen him much this summer so he had a lot to tell me! He was asking questions about my arms so I let him try in my night sleeves and showed how I wrap. He showed me how to get poke balls for the Pokemon Go game. We made a date to go see the Secret Life of pets since we've been waiting for it to come out but then we both got busy. :-)

Rough day

Today (well, yesterday now) was a long, emotional day. Viewing at funeral home Wed. night, funeral today. My cousin, Mandy, jokingly asked if I was "forced" to go up to the casket (that's what some relatives used to make us do) & I said I went willingly this time. :)

I touched his hand. Never done that before. Skin so cold. Not there.

I heard he had been floating in the lazy river, splashing the grandson when it happened. He was having fun. There is comfort in that.

I'm a ball of emotion: sadness, anger, frustration, anxiety. Poor cuticles.

I'm sad that I only see my cousins during these sad events. That's not right.

You want a physicist to speak at your funeral. You want the physicist to talk to your grieving family about the conservation of energy, so they will understand that your energy has not died. You want the physicist to remind your sobbing mother about the first law of thermodynamics; that no energy gets created in the universe, and none is destroyed. You want your mother to know that all your energy, every vibration, every Btu of heat, every wave of every particle that was her beloved child remains with her in this world. You want the physicist to tell your weeping father that amid energies of the cosmos, you gave as good as you got.

And at one point you'd hope that the physicist would step down from the pulpit and walk to your brokenhearted spouse there in the pew and tell him that all the photons that ever bounced off your face, all the particles whose paths were interrupted by your smile, by the touch of your hair, hundreds of trillions of particles, have raced off like children, their ways forever changed by you. And as your widow rocks in the arms of a loving family, may the physicist let her know that all the photons that bounced from you were gathered in the particle detectors that are her eyes, that those photons created within her constellations of electromagnetically charged neurons whose energy will go on forever.

And the physicist will remind the congregation of how much of all our energy is given off as heat. There may be a few fanning themselves with their programs as he says it. And he will tell them that the warmth that flowed through you in life is still here, still part of all that we are, even as we who mourn continue the heat of our own lives.

And you'll want the physicist to explain to those who loved you that they need not have faith; indeed, they should not have faith. Let them know that they can measure, that scientists have measured precisely the conservation of energy and found it accurate, verifiable and consistent across space and time. You can hope your family will examine the evidence and satisfy themselves that the science is sound and that they'll be comforted to know your energy's still around. According to the law of the conservation of energy, not a bit of you is gone; you're just less orderly. Amen.

-Aaron Freeman.

Sad couple of days

There was a  memorial service for my mom's friend on Sat. My uncle's viewing will be Wed with funeral on Thurs. Still stunned by his death.

I've used my coping methods today: loud music, picking cuticles, and revisiting my favorite plane crashes. Not being as morbid as some may think. I love learning what went wrong and how it was fixed.
Also got a good workout paddling on the river Fri night.

I'll be heading to Indiana in a few days.

Mary Dague

She was a bomb tech in Iraq and lost both of her arms. She's also a breast cancer survivor. Gorgeous.

More about Mary:

http://unstoppableheroes.com/meet-heroes/mary-dague/

Once again

I have lost someone very dear to me. Another person who had been there throughout my life. My uncle had a massive stroke & died yesterday in the hospital. I am heartbroken. It hurts so bad to think of never hearing him talk again. He was always in a good mood. I feel awful that there are two little boys (his grandsons) who must be completely confused and devastated. Being part of a blended family he never made me feel like an outsider. He accepted me as one of the great big happy bunch. I will miss him.

I'm glad my appetite wasn't affected

https://www.ihadcancer.com/h3-blog/07-25-2016/12-things-only-a-survivor-can-tell-you-about-cancer

Faslodex bruise

Sometimes I don't bruise from it. Sometimes only one side bruises. I can feel lumps in both hips from the injections but only my left has a bruise. It's the side that hurt the most when it was being injected.

I need to make more positive posts...

"I’d so love to have a magic wand and wave everyone’s fears away.  I can’t do that, but I can tell you that by focussing only on the positives, it has driven my fear away and given me my life back.   Life is for living, not fearing the tomorrows."

http://m.huffpost.com/us/entry/us_5762f83ae4b07d4d0a41e451

Faslodex & port flush

It was taco Tuesday! :)  I go for chicken tacos after my injections.

I had my port flushed & blood drawn. The nurse and I had a good laugh after she asked if I needed the numbing spray. I told her no, that I used to have it but once it didn't and found out it wasn't so bad. Didn't even feel her poke.

I did feel her poke me in the butt/hip muscle. This time the left side hurt worse. 

All over until the 31st.

Journal entry Nov. 1, 2012

Haven't written much lately. Each time is a repeat of the time before. Chemo on Mon.--feel ok. Tues.--a bit yuckier, Neulasta injection-bones ache Tues pm to Thurs.

Wed.--worst day

Thurs.--starting to recover

Fri.--

Biotene for dry mouth is disgusting. Like squirting warm spit into my mouth.

So far things taste ok. Chicken tacos tomorrow!

Upcoming events

Yesterday I joined the health club/gym/workout place/ whatever it's called. Occasionally they offer scholarships and I saw they were doing it now. I printed out the application, grabbed a copy of my tax return & the letter from SS about my disability benefits. They approved it while I was there. Yay! So I'll pay $19/month instead of $38 & no application fee. I'm hoping to be motivated more if I have a place to go. I joined once before to swim laps but they have 3 lanes & inconvenient pool times so I ended my membership.

I hope they have a punching bag... ;-)

In August I get to have TWO injections. Lucky me! Ha ha! I guess it's because it's a long month??? I also have a CT scan & bone scan coming up followed by a 

appointment with the oncologist. And, of course, more PT for the arms but hopefully no ER visits!

My post from 7/21/16

The friend that I posted about died this morning at home. I am heartbroken.

We saw her just yesterday and she had gone downhill since the 21st. She was in bed, tried to open her eyes, tried to talk. I'm glad I got to see her but I'm devastated that she was trying so hard to talk & couldn't. I am so very sad.

Positive

Though "we may not live to see the glory," as the song from the musical Hamilton goes, "let us gladly join the fight."

Let our legacy be about "planting seeds in a garden you never get to see."

That's why we're here...not just in this hall, but on this Earth.

---Hillary Clinton 7/28/2016