9 months later…

18519742_10155352917056079_1466615439325478727_nWell, wow.

I would have sworn that I’ve updated this blog since last September but apparently not.  There has been lots going on.   I’ll make this as short as possible so that I can get everyone up to today without making it a novel.

When I last updated, I had just gotten the penis radiation drawn on me.  I reread that entry and realized that I failed to note that when they positioned my arm for the new radiation drawing, they pulled my left arm up higher than I was flexible post-surgery/lumpectomy.  This was exceedingly painful and I was basically screaming at them to let me move it.  They kept asking for 5 more minutes and, when it was over, I was crying and in incredible pain.

The next morning, I woke up and my left shoulder/arm/side were at a pain level 11 and I couldn’t move/lift my arm.  No strength in my hand either.  If I needed my arm to be in a different spot, I had to pick it up with my right hand and move it.  I can’t remember back to what we did other than pain meds.  I still have massive pain in this arm and shoulder 9 months later.

Because I couldn’t move my arm, I had to stop the radiation.  Got to take the penis outline off of me!!!

Then I got admitted because my platelets went down to 4 and I got a nosebleed from hell.  I was about to be discharged from the hospital a few days later when I got a humongous nose bleed and the doctors said, Nope you are staying.  My nose bled for about 12 hours.  The next day some doctors from ENT came in and were going to clean out my nose and cauterize the bleed spot so that I could go home.  They didn’t give me any anti anxiety or pain med but went in with those scary ass tweezers and suckers and stuff.  Apparently they saw something kind of far back up my Right Nostril and wanted to get it out.  I’m screaming in pain so they start giving me IV Dilauded.  Well my adrenaline was so high that my body didn’t react to the Dilauded so they gave me more and then Ativan and then who knows.  After 4.5 hours of being tortured, they finally just put a ton of packing in and called it a night.  My mom was there and can attest to the fact that it was incredibly traumatic.  I started to relax and fall asleep and mom went home.

Apparently, the next morning, I decided to go for a walk.  I don’t remember this or most of that day.  The housekeeper saw me walk out of my room with blood all over me and the floor.  Then I turned around back into my room.  She came after me and found me on the floor unconscious with blood pouring from my mouth.  They called a CODE on me and when I finally woke up enough, I was in the ICU with a second IV and my entire family and a few extra friends were there.  Apparently the hospital called my mom and brother and basically told them that I was not going to make it.  They thought that I was having a brain hemorrhage as most of them didn’t know what had happened the day before with the ENTs.  I was in and out of it after they were able to wake me up and respond to questions.  Next thing I know, my aunt is flying in from North Carolina and my friend Sue was flying in from Philadelphia.   It’s been considered that I was possibly OD’d on pain meds during my ENT visit but noone knows exactly what I got.  I was out of ICU the next day and home a few days later.  I got to have a nice visit in hospital with my USC besties and a nice visit with my Aunt and Sue after I got discharged.

So now, I continue to get nosebleeds that last a minimum of 2 and go up to 14 hours.  I’ve learned how to contain them more to the 2 hour range.  It’s ALWAYS that same right nostril, so I’m convinced that they just completely FUCKED up my nose.  I refuse to let the ENTs near me.

Again my platelets were crazy low, so I stopped taking the Eligard and Faslodex.  My oncologist at the time pretty much told me it was a waste of time anyway.  I basically decided not to treat the cancer for a while.

I ended up in the hospital again in December for a few days but can’t remember why.

At the end of January, I got a small lump under my jaw.  I thought it might be an infected tooth but the lump grew to be golf ball sized and you could totally see it.  Into the hospital we go.  They attempted to drain it (so fun!) but it ended up being an infection.  I couldn’t open my mouth wider than to get a straw in so I was on a mushy food diet and again my pain level was an 11.  It was so bad, I had to go on a Dilauded pump with extra meds before and after I ate.   I went from 128 to 108 in two weeks.  I had to have a CT scan with contrast and because I’m allergic to the contrast they had to give me 150mg over 12 hours before the test of Prednisone.  The prednisone actually took the swelling down noticibly so I was on a low dose of Pred for a week after discharge.   I was inpatient for 2 weeks.  Turns out the infection was caused by a blocked salivary gland so I have to eat sour candy every day.  Sour Patch Kids are the best.

Now I’m back up to 112 lbs but I’m having problems gaining weight.  I need the weight in case I get sick so it won’t be dangerous if I lose weight while sick.  Life is strange.

Within a few weeks after that, I was starting to have massive pressure in my chest and shortness of breath.  After tons of scans and another thoracentesis, it was determined that my breast cancer, that had spread to my right pleural lining, had now moved to my left pleural lining and there were tumors in my lungs.  I was given a new oncologist and they started me back on the Eligard and Faslodex, even though my platelets are still low.  I get those shots once a month.

At the end of March, I was having severe shortness of breath and I was admitted again.  I got another thoracentesis and an order for at home Oxygen.  So now I’m connected to O2 tanks and compressors most of the time.  When my blood count gets low,  I have to wear it all the time but, like today,  I would forget about it for a few hours and still do okay.  This is a forever thing.

My last admit to USC was the first week of April – so I’ve officially gone 2.5 months without going inpatient.  HURRAH!  I get tired easily so I’m not going out a ton but I can see friends and go on one walking errand a day or every two days.  This is better than a month or so ago when I couldn’t walk across the house without gasping for air!

I go in every Wednesday for lab tests and a shot of medicine that is supposed to help with my Platelets.  Every fourth Wednesday, I get the Eligard and Faslodex shots.  I feel unwell after the Platelet shots until the next day.  The day I get all the shots, I feel terrible for a few days.  I see my new oncologist on the “big shot” days.  I really like her – she seems positive that we can slow down or stop the cancer progress.  I’m definitely optimistic.

I’m also getting transfusions pretty much every week now.  My hematologist is worried that if my nose really bleeds, my blood count will go too low and it could cause cardiac arrest or stroke. FUN!!!  My diabetes is hanging in there…. I’m still here so all is well!!!

I am encouraged by my labs.  My oncologist is running the CA 15-3 test every month.  This is the tumor marker test for metastatic breast cancer.  People without cancer will have a level of 30 or less.  My first test a few month ago was 385.  My most recent test was 297.  Going down is a good thing!!!  Fingers crossed that it keeps going at that direction.  I did some research and some Stage 4 patients have a 15-3 in the multiple thousands.  I’m happy with my little number.

IMG_20161116_194036On fun notes, since I last wrote, I have seen a bunch of musicals:  Hedwig and the Angry Inch, Amelie, Fun Home, Finding Neverland, The King and I, and Into the Woods.  In August & September, I’m seeing Hamilton (WORK!).  Mom and I renewed our season tickets for the Pantages for next year and having tickets to Aladdin, Love Never Dies, School of Rock, The Color Purple, On Your Feet and Waitress.  I’m also hoping to see Something Rotten and Bright Star this fall.

 

 

My mom turned a big birthday this past March and so my brother, sister-in-law, niece and I took her to Universal Studios and we basically spent the entire day in Harry Potter World.  I got a great deal from AAA so we actually have annual passes.  The summer is blocked out but we don’t have any interest in going in the summer anyways.  We are looking forward to hitting the stores in the front of the park next time!

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We just had an amazing visit with my cousin Mike and his wife Megan.  I hadn’t seen Mike for about 17 years and I had never met Megan other than facebook.  They are a wonderful couple and we had a great visit.  Megan has a cousin out in LA who took them all over Hollywood for a day or two.  We spent the time just talking and talking.  Hopefully we can make it to Austin (where they live) within the next year – it sounds like a blast!!!   I also have friends and other family that live nearby that I would love to see.  Fingers crossed!!!

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Next up for me is labs and the platelet shot tomorrow.

Oh, and I have a new cat, Hallie.  I had to put down Chester last August.  I adopted Hallie in late September.  She just turned one in April.  I call her “Hurricane Hallie”.  She’s mostly sweet then she goes crazy out of nowhere.  Typical cat!

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Fight On!

 

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Radiation Gets Naughty

Hurrah!  Today was day 25 of 33 for Radiation.  I have three more sessions of my complicated radiation (three different setups) and then 5 sessions of super quick blasts to my scar area.  The idea is to attack the original and recent cancer spots with big blasts of rads to kill the area.

My skin is doing well.  I saw the RO Doc on Monday and she said everything looked good.  The blasted area is darker but I’m not peeling or getting any sores.  I was peeling really bad (so gross, my skin was black and peeling) but I started to use a meshy shower pouf (very gently) and it’s been helping keep my skin soft.  That and that nasty but helpful Aquaflor stuff.

Today was an extra long session.  I had to get pictures taken.  I have no idea why they do this but they do it every two or three days.  It adds about 10 minutes.  Then I got my regular radiation (1/2 hour).  Then they had to do the setup for the 5 scar blast sessions.  This took about 25 minutes.

It got a little funny.  The RO Doc came in and made red sharpie X’s around the area that needs the blast (my scars and about an inch around the scars).  I’m laying there thinking that the places she was marking might make a very interesting pattern.  Then she took the marker and connected the X’s.  There were a few radiation therapists and a physicist around her watching.  All of a sudden, they all started giggling.  So I said,

“Dr. Ballas, did you just draw a penis on my chest?”

Why yes, yes she did!

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To make it even better, they had to then trace the “shape” onto plastic to create a thing that will go over this area during radiation.  They also had to draw it on a piece of glass so they could line it up with the rad machine.   I don’t know if you can see the shiny spots but those are stickers that indicate the major lines/corners.  I have to keep these on for two weeks.   Grrrreeeeaaaaat.

So that was fun.

Tomorrow I have radiation (#26!) in the morning and then I go to the day hospital for blood and my monthly Eligard shot.  My counts this week were super low; like I’m not allowed to drive low.  My platelets are being affected by the new cancer shots I get so I have bruises all over me.   Apparently, this is normal for people in the first part of getting this drug while you get it every 2 weeks.  I’m getting it (Faslodex) again next Monday and that is the last 2 week session.  After that I get them once a month and the platelets are supposed to recover.   My immune system is worse than usual right now too.  I’m hoping that once radiation is over and my schedule is more normal, things will get start going up.

So glad to be getting back to normal!  Thank you all for your continued support/prayers/healing thought and light.  XOXO

Now, about that USC “game.”

That was horrible.  I had some hope that USC might win but it was a recipe for disaster to put us, with three coaching staffs in 4 years, up against the #1 team in the country with a settled program.  We were totally outmatched.

Some positives:

I thought our defense did great but just got tired.

Ok…that’s the only positive.  Our offense started out strong but they got rattled in the second quarter and never recovered.  They had NINE “3 and outs.”   No way you can win a game with that kind of stat.

This Saturday USC plays Utah State, another non-conference game.  I’m not giving up on our team.  I know that sometimes you can get kicked in that ass but how you respond to that is what defines your character.  I hope that the university, alumni and students gives this coaching staff and team a decent chance to get things together.  Even Pete Carroll lost his first few games and look what happened during his reign.

As Always, FIGHT ON!

 

 

 

 

 


Crazy Month

I just looked at my blog and saw that my last post was on August 3rd.  So much has happened since then it feels like ages.

Edited:  I just finished this post and it is REALLY LONG!  Don’t say I didn’t warn you 🙂

So I had outlined a bunch of things that were going to happen that Friday, August 4th.   I did most of them.

  1.  Punch Biopsy of lump next to where my previous surgery was.  My surgeon couldn’t get the punch biopsier thingy to do what he wanted so he ended up doing a lumpectomy.   He had just given me a local anesthetic but it didn’t hurt much, just mostly tugging.  I didn’t know he was doing a lumpectomy until I saw the specimen jar that he passed over me to the nurse.  Instead of being a small circular specimen, smaller than a pencil eraser, it looked more like a mini marshmallow.  I wish I had had my camera because it was kind of cool.
    1. Results:  another local recurrence of breast cancer.  la di da.
  2. Chest Xray – well it turns out that I had 1.5 litres of fluid in my pleural lining.  I know this because at the end of my transfusion, I wasn’t able to breathe.  All the blood that was infused into me combined with the fluid in my pleural lining and created a huge pressure on my chest and I couldn’t breathe.  (O2 sat = 80%).  So I ended up getting admitted to Norris for the weekend and the next day had a thoracentesis.
    1. Result:  Pathology report comes back with the pleural fluid malignant.  My breast cancer has metasticized into malignant pleural effusion.  Stage 4.  SO FUN!
    2. Freak out a bit.  Talk to my oncologist who tells me it’s not a 4 month prognosis if we can keep the fluid under control.   So I probably need a pleuradesis which requires a 7 day inpatient stay.  (LIES!  It was a 13 day inpatient stay)
  3. I didn’t get the Eligard, Faslodex and Amacor.  It was already a crazy day.

 

I got out of the hospital on Sunday, August 7th and on Monday the 8th, I started having the shortness of breath again. I had another chest xray on Tuesday that showed that my pleural lining had already filled up again and got signed up for ANOTHER thoracentesis that Thursday, the 11th.

Let me tell you, thorcentesis SUCKS!  You are sitting up with your legs hanging over the side of an ultrasound bed with your arms and head on a pillow that is at a comfortable height on a table.  So the position isn’t uncomfortable.   Then the radiologist does an ultrasound on your back to find the area with the biggest amount of fluid.  Once they find that spot, they sharpie it.  Then they inject you with lidocaine (this SUCKS and HURTS!).  After you are numbed up, they stick a needle into your back, through your chest wall and into the pleural space.  Then they retract the needle, which leaves a catheter and stick the free end of the catheter into a vacuumed 1 ltr bottle.  Then the fluid gets sucked out of you.  It takes about 5 minutes for 1.5 litre and they stop when you start coughing your lungs out.   They remove the catheter then slap a big bandage on it and off you go.

That Thursday, my friend Amy (who sat with me and ordered people around all day when I was having multiple panic attacks) and I mosied on to Norris.  On that day, I did this:

  1. Radiation
  2. 1 unit of platelets
    1. This is where I had anxiety attack number 1.  I hate getting platelets and have to have tons of premeds in order to not have bad reactions.  Unfortunately, I have bad reacations to the pre-meds (IV Hydrocortisone specifically)
  3. 1 hour of Amicar (platelet medicine)
  4. Eligard shot (monthly to shut down my hormones)
  5. Thoracentesis
    1. This was where I had anxiety attack number 2.  Full on breakdown.   Panic Attack brought on by a reaction to the hydrocortisone.  I couldn’t stop shaking and crying.  I felt totally crazy.  The radiologist said he couldn’t do the procedure if I didn’t calm down.  So I just steadied myself and they started the procedure.  Unfortunately the place they had to insert the needle was just next to where they had gone in 6 days prior.  So that felt lovely.  They took out 1.4 ltrs but had to stop because I started coughing and then dry heaving which kicked off anxiety attack number 3.  They patched me up and then Amy commandeered a wheelchair and a transport person and we went back to the day hospital where I had to get
  6. 1 more hour of Amicar
  7. My two faslodex shots.
    1. These are intramuscular shots – 1 in each hip.  By this time I was a freaking mess and didn’t think I could do it but I sucked it up.  They stung like bitches but it was all over.  And afterwards, Amy and I ended up at a Red Robins in West Covina and had the best freaking hamburgers on the planet.

 

By Sunday, I was short of breath again.  On Monday the 15th, I had another chest xray that showed I was full up of fluid again.   I had an appointment with my oncologist and she said that it was advisable to try a procedure called pleurodesis.   I would be inpatient for about 7 days (LIES!) and the procedure wouldn’t be painful just a lot of uncomfortable pressure (MORE LIES!).  The procedure wouldn’t  cure my pleural lining cancer but it would make it so that I wouldn’t have to get my pleural lining drained ever again.

First they put in a pigtail cathether.  The person scans for a good placement using a ct scanner.  Once they find a good spot, they inject you with shit tons of lidocaine (PAIN!).  Once you are numbed up, they make a little incision and start weaving a long needle into your pleural lining. This is the part that is only supposed to be pressured but it hurts LIKE A BITCH!!!!!  Once they get the needle in, they start inserting these expander things in so that your pleural lining opens up to the size of the catheter.  This sucks.  I was basically screaming.  Pressure my ASS!   Then they run the catheter up and remove the expanders and needle.  Once they do this, 90% of the pain goes away immediately.   Then they slap a bandage over the tube coming out your back and hook the catheter up to a bag.  When they hooked me up to a bag, they anticipated moving me up to my room, but the bag filled up so quickly, they had to drain it.  (600 ml)  Then the bag started filling up again and I told them to wait and they freaked because the bag started filling up again super fast.  Then I had another panic attack because the fluid was leaving my body so fast that my lungs couldn’t expand fast enough and I couldn’t breathe.  So they had to mainipulate the bag so that it would fill up and nothing would drain so that my lungs could catch up.  So they spent about 10 minutes letting the bad fill up, then drain a bit, fill up, drain a bit,… until I was breathing easier.   All in all, they drained 1.3 ltrs from me in the fifteen minutes post placement.

Best part of this procedure:  You absolutely cannot get the bandage wet.  So no showers for me for over a week.  My hair was SO DISGUSTING.  I was able to do sponge bath stuff but still…blech.

They gave me pain meds that night but the next morning I woke up with pleurisy pain on my left side.  I was in so much pain that I was basically on dilaudid  for two days.  I hardly remember anything.  My mom brought me a care package that had been sent to the house and when I tried to email a thank you, I couldn’t remember what to type or what words were.  It was so bizarre.   So to explain why I didn’t post much or send thank yous for the cards, care packages, etc…  it was because I couldn’t put two words together.  I couldn’t even keep a conversation.  If I wasn’t in so much pain it would have been sort of hilarious.

The next few days, they do a chest xray every day and monitor the fluid output.  My output went to 20ml/day in a few days.  So they did the pleurodesis.   They shot me up with dilauded and then the thoracic surgeons shot medical grade talc into my catheter.  The purpose of this is to irritate the pleural lining so much that it gets inflamed and the lungs and lining stick together, therefore removing the space where fluid could build up.  It’s purpose is to avoid having to have thoracentesis all the time.   After they inject the talc, you have to lie on your back, then right side, then stomach, then left side, each for 1/2 hour so the talc spreads around.  I didn’t care because I was still out of it from the dilauded.

Starting around this day, I was so tired from the pain that I was basically in panic attack mode 24/7.  They kept me hopped up on anxiety and pain meds.  Oh, and I had sprung a slight fever so they went to the protocol for aplastic anemia and I was put on two IV antibiotics every 6 hours.

After a few days of no fluid drainage, they came and gave me more dilauded, and pulled the catheter out of my back.  That was Wednesday and I had no draining or fluid build up (chest xrays every day) so on Saturday I got to come home.

Somewhere in there I got a platelet transfusion and a few units of blood.

So now I am resting and recovering from the hospital stay.  My lower lungs still aren’t totally back to normal so I get short of breath easily.  My back where the catheter was still hurts.   Usually after a hospital stay, I feel fantastic.  This was the worst I’ve felt ever.  Worse than the mastectomy.  I still feel like crap but at least I can breathe!!!!   It’s going to take a while to get back to normal.

Tomorrow:   Radiation (#17), Rad-Oncologist appt, possible Amicar infusion and faslodex shots.

Finally, a normal day!!!!

Fight On!

 

 

 


Rads Day 8: Not so good

The last few days of rads have gone off without a hitch.  Today was another story.

It’s transfusion week.  When I get a few days out from Blood Friday, I get symptomatic.  The symptoms get worse as my hemoglobin goes lower – but even on a good transfusion week, I’m still symptomatic.

My HgB today is 8.8.  Normal for a woman my age is 12-16.  So I’m low, but this is actually not a bad low for a transfusion week.   I still have the following symptoms:

  1.  Headache – like a tourniquet around your head; no pain relievers work
  2. Shortness of breath – like someone is stepping on my upper chest.
  3. Dizziness
  4. Fatigue/Insomnia – NICE!
  5. Emotional Disaster – more prone to stress out and not be able to control panic attacks.

When I first started rads a few weeks ago, I was wondering how it would go when I was low on blood.  After last week went so well, I didn’t think there would be an issue.  I might be tired but that’s no big deal when you just have to lie on a table for 30 minutes.  Right?

Wrong.

It actually started a bit yesterday.  I was having shortness of breath and noticed that I was not as relaxed as normal during radiation.  Then they surprised me with a new CT scan that took about an hour.  By the end of that, I was so anxious and generally uneasy.

Today, it was like the first day I was there when I failed radiation.  They had to do xrays today and for some reason, it was taking forever to manipulate me and the machine to the proper coordinates.  I had a gigantic headache and was getting dizzy.  Then I started to have a panic attack.  As I was trying to talk myself down from the panic attack, I just burst into tears.  Then I felt the shortness of breath acutely.  Luckily, they had just finished the first of the 3 stages of rads.  As soon as they came in the room, I moved my non-rads arm to wipe my eyes and they all yelled “DONT MOVE!”.  Yeah, too bad.

Then they all noticed I was freaking out and tried to console me.  I tried to explain that it wasn’t the radiation process that was bugging me, it was the side effects of needing a transfusion that was making me spazz.  They didn’t get it.

At that point it was the second part of the rads, where they put this molded plastic thing on me.  It absorbs the full blast and filters the rads down to me.  Usually they just lay this thing on me and off we go.  This time, they decided to tape it down by strapping it from the side of the board I’m laying on, OVER me, and onto the other side of the board.  This did NOT help with the feeling that I had something sitting on my chest and I could barely hold it together.  One of the therapists wiped the tears from my eyes, which was totally sweet.

Then it was time for the third pass and I was making noise about getting up and leaving, but I hung in there because the third pass is really quick.  Then I booked it out of there.  I wanted to skip tomorrow and Friday but the therapists freaked out on me (my doctor is in Chicago) so I finally just said, forget it I’ll be here tomorrow, but don’t be surprised if I don’t make it.

So basically, I’m dreading tomorrow.  My mom is driving me because after today’s session it took me close to an hour to get calmed down enough to drive home.

I did send out an email that will make me much loved by my doctors.  I think I’ve done a decent job of basically doing everything they’ve asked for but I have to watch out for myself.  So I’ve decided to cancel my radiation sessions that occur on Transfusion days.  There is only so much I can deal with.  I want to take the Thursdays off as well, but I know its not good to miss too many sessions (if any) so I didn’t mention that, although I will be letting them know if it’s transfusion week and if I feel like shit, I’m skipping.

Tomorrow should hopefully be uneventful.  I’ll either do the rads or freak out.

Friday may be super easy or a complete nightmare.

My possible Friday schedule:

  1. Radiation– not an issue, decided to cancel.  It was supposed to be at 7:15am.
  2. Chest Xray – Because I STILL have pleuritis and some fluid on my right lung
  3. Punch Biopsy – Next to my most recent incision on my side, there is a concerning lump.  So I’ve been told they want to do a biopsy of it on Friday so I have the weekend to heal before they radiate that area on Monday.  Punch Biopsy – look it up.  Seems unpleasant.
  4. Transfusion – 2 units
  5. Eligard Shot – in my abdomen, puts me in menopause.
  6. Faslodex Shots -2 of them, Intramuscular (meaning, in the ass) , New medicine to me to stop tumors from growing.
  7. Amacor IV meds – to help me heal from the Faslodex shots.  Being intramuscular, I could get serious infections if they don’t heal up.  This medicine will help.

The Chest Xray and Biopsy are supposed to be Friday but I’ve gotten no calls from the hospital that they are even scheduled.  The doctor coordinating these two items will be in Brazil starting tomorrow (I think) and back to USC on Monday.  So I’m just waiting around until end of day tomorrow to hear if Friday will be horrible or not.  Grrrr.

Was very hard to fight on today, but I made it through.  I just have to get through tomorrow and Friday.  Then it is the weekend and I can crawl into a hole and emerge for tea and olympics.

Go Team USA!  FIGHT ON USC OLYMPIANS!!!

 


Week one done! Off to the Hello Kitty Cafe Truck…

One week down, 5 more to go.

I saw my Radiation Oncologist yesterday in the RONC offices.  She stopped me and told me that she had heard from the therapists that I was some kind of rock star with radiation.

I agree. Rock Star I am.

It’s getting easier, although I still have the pleuritis (inflammation in my lung) and that still hurts.  I’m dealing.  My skin is also starting to turn pink.  Not very, but it’s coming.  I’m now wearing that Aquaflor goop more.  Luckily I found a bunch of t-shirts that were still wearable but needed tossing out (stains) so I have plenty of shirts to ruin in the next month.  This stuff is just sticky, oily and disgusting.

So I decided that I was going to give myself a little reward at the end of each week.  Nothing huge, just something fun to do.  Today I went to the…

Hello Kitty Cafe Truck!

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It was making a stop at Victoria Gardens in Rancho Cucamonga today from 10 – 8pm.  I met my good friend Amy, her husband Leigh and their daughter Ella and we had fun standing in line.

Maybe fun isn’t the right word.

Horrible is a word.  We got into line at 9:15am and finally got to the truck at 11:30am.  It was only 95 degrees but the humidity made it probably just over 100.  I knew I would have issues standing in line so I brought my mom’s walker that has a seat.  Thank GOD!  Leigh was also super sweet to run out and get us icy drinks from nearby.  It actually was fun in a “get to hang out with friends and do something silly” but it was so hot.

I think I got sunburned, which should make my radiation oncologist just slightly pissy.  (Big No-No) Oh well.

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Yes, Everything was really that expensive.  It is only worth the money if it is something you don’t plan on doing more than once.

I got the Petit 4 Cakes (Almond, Raspberry, Lemon and Chocolate).  Good but SWEET!

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I also got a t-shirt.  To wear after I can stop putting this oily, sticky crap on my skin:

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The guy that gave me the shirt gave me some swag – a button and stickers!!!

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It was a not-so-cool way to spend a Saturday morning.   But I can say I was one of the crazy ones out there.  Plus I got to spend time with this sweet girl, where I could finally have a conversation about Elena of Avalor and the new Doc McStuffins special on Disney Jr.

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Have a great weekend!

FIGHT ON!

PS:  Even though it’s not a radiation day, I’m still wearing fun socks.  I realized that I have no Hello Kitty (for shame!) so I wore my bright pink, yellow and black Batman socks.  I also just realized that those socks with the black shoes I’m wearing make my feet look enormous!  At least it detracts from the single breasted, muffin top action going on up higher!

 


Igor and Flora

I promised pictures of the radiation machine today.  I found pictures on Google of the exact machine that I am in – the Varian Trilogy.

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So I am on the long platform with my head at the end with the big machine.  On the platform is a long sled thing that has two arm thingies that raise my arms so that my hands are near the top of my head and a shelf they refer to as “the butt rest”.  Then they put a leg rest below the butt rest so that my legs are bent and more comfy.

The platform moves up and down, forward and backwards and side to side.  I have marks all over me so that the platform is positioned in line with the radiation angles of the machine.  The part of the big machine that is white and grey move 360 degrees around you.  At one point the blue piece directly over the platform, moves under me and off to my left side to blast the back of my left flank.

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This is a different color machine but you can see what I mean by it rotating.

They keep the lights on while the radiation is blasting, but between blasts, the lights go off and the therapists turn on green laser lines so they can line up and measure the angles  of radiation.  It is incredibly precise.

Every two or three days I have to extend the radiation party by 10 minutes because they have to take xrays to make sure that all my markings are still in alignment.  That’s tomorrow.

 

 

Flora and Igor:

Flora is the big blue thing from the first picture.  This is what it looks like when you are underneath it.

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When this is in its resting position it is about 10 inches from your face.

The teeth start out all closed but then move around based on where things need to be zapped.   At one point they all open up and you get this beak like thing in the center, like a thing that’s going to eat you.

I want to say it is 18 to 24″ in diameter.  It looks mean – no idea why “Flora” popped into my mind. Maybe the blue?

 

 

Igor looks like the top part of Wall-E.   When it is right above you, it looks like the giant eye, which made me think of Igor (EYE-gor) from Young Frankenstein (Frohnkinsteen).  It didn’t do much today which makes me think that it is used for the xrays.  So we may meet again tomorrow.   It’s on this arm like contraption so it kind of darts in and out above you and goes up and down, so it is very inquisitive.

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Socks of the Day:   Leonard from Big Bang Theory

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Fight On!

 


Radiation: Day 1

Warning:  I’ve included a picture of my torso that shows the radiation areas.  It’s safe for work but if you’ve never seen a mastectomied person, it can be a bit jarring.

I did it!  I did it!  I did it!

After I had the chat with my ONC, I just set my mind that I had to do it.  I was super nervous still and I’m still in all that pain but I just dealt with it.

It helped that I took a Norco and chased it with an Ativan a few minutes before I got there.  I was feeling rather funky.  I also got a better gown.  Last week they had me put on this thick blue, long sleeved with cuffs gown that was about 1000 degrees, so today I requested a short sleeve, normal hospital gown.  Much nicer.

I got in the room and it was the same therapists from last week.  I thanked them for their patience last week and we had a good laugh about it.  They ask me if I want music during the setup/rads (about 1.5 hours), and of course I said yes.

Therapist:  Can we put on some Classical or New Age?  Something calming?

Me:  Well, no.  Can you put on 80’s Hair Bands?

Therapist:  80’s Hair Bands?

Therapist 2: Who would that be?  (for shame)

Me:  You know, Aerosmith, Whitesnake, Motley Crue…

Therapist:  That’s calming?

Me:  No, but it’s definitely more fun!

They found a GREAT pandora station and I spent the setup and radiation listening to and singing 80’s hair bands.  I can sing easily from the position I’m laying in although my voice is still crap.  I can’t air guitar or drum.  They get mad and tell me to lie still.

During the setup, they had to draw all over me with different colors to mark each of the different sections they are radiating.

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Everything in the red sections gets radiation and under my arm there is a green section that goes around my side that gets zapped as well.  Every section is a different setup position for the machine.  They put tegaderm stickers all over me to maintain the key points of the lines.  The rest will wash off.

I get 3 sections of Protons (the radiation that goes deep) and 2 sections of Electrons (the radiation that doesn’t go as deep).  It doesn’t get zapped from straight down, there are complicated angles that you get zapped so that the radiation hits the area affected and not healthy tissue (or bone marrow areas)

I didn’t feel anything during the radiation.  The machine buzzes while you are getting zapped.   The machine is nuts.  You think there is only one thing above you but then it starts rotating around you and like 6 different parts came out from nowhere.  It looked like I was being investigated by aliens.

Of course I named two of the parts:  Igor and Flora

Igor is a rectangle and looks like the top eye part of Wall-E. Very inquisitive. (FYI: it’s EYE-gore not EEE-gore)

Flora is circular; blue all around with this metal circle plate in the middle.  It looks all nice and sweet but then this section in the middle starts opening up and it looks like a thousand teeth coming to eat you.

I’ll draw pictures tomorrow, I need to get a second look.

I also like fun socks, so I’ve decided to wear a new pair of fun socks each day I go.  These are my day 1 socks:  The Flash!

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32 days to go.  Thanks for the prayers and positive energy!

FIGHT ON!