Tuesday, May 31, 2011

in sickness and in health...

Well my Cool Magic Gel Pads are so full of fluid they are going to explode...but I can't take them off (because I cry when they aren't on) and I don't have any left--I am anxiously waiting by the door for the UPS guy, when he comes, I may ravage him with hugs and scream 'thank you' at the top of my lungs!

I have decided I want to be on Ellen (or somewhere that issues can be raised, donations can be given, and awareness is highlighted).  During radiation I watched a portion of her show daily, it was on while I would wait in my high-fashion hospital gown for my turn to go under the gun.  I want people to be aware of breast cancer year round, not just during Breast Cancer Awareness Month, I want people to read my blog, I want to help women understand their bodies, prevention, perseverance, gratitude and the celebration of life.  I want people to ask me questions, I want to hear feed back, I want to hug everyone who has ever commented on my blog, everyone who sent me emails that make me cry and laugh and reevaluate my thoughts.

I want Scott to be recognized on TV (or something....I don't think there is a gift or card for thanking someone for saving your life) for his ability to maneuver this situation with an ease and love that is unheard of in most people.  There are no words for the awe I feel for what he has done for me this past year.  I don't even think we said "in sickness and in health" at our wedding......pretty sure when we mixed the sand symbolizing the merging of our families he didn't look in and see my nipples in there or a road map leading to cancer, you can't prepare for something like this.

I want something to happen for him to be able to relax for the rest of his life, so he can be outside (crazy bastard) all the time and not have to worry about bills.  I want Ellen to pay our mortgage or fix our creepy basement that I can't even go in without having a panic attack.  I just want Scott to catch a fucking break.  If there is anyone I have ever met that deserves it, he is it.  I want him to have every outdoor adventure thingy (obviously this isn't my forte) so he can just chose one and go on his way. 

I want to be healthy enough to join him (and get over my laziness, fear, and dislike of being cold, wet, hungry, achy, tired, or my urge to be under covers when I am faced with something I have never done--more blogging to come on this subject.....be prepared for lots of foul language).

I want a lot of things.  I also want to hear from people who read my blog! I want comments, questions, references, antidotes, suggestions, ANYTHING! Criticism? Love it! 

Please email me at: lumpsandlipstick@gmail.com

Monday, May 30, 2011

pour some gasoline on the fire.

Lucy, my nap buddy
I was going to write a blog about how much Scott and I want to be parents, how I get emotionally drained even thinking about the process of becoming a family, how I endlessly ask the universe to let whatever process that happens, happen smoothly....'wanting' is such a draining and exhausting emotion.  I have written numerous blogs that I have not posted about becoming a family, about what it means to us, about people who take it for granted. But then, I slipped in the shower while shower-dancing and pulled a lady-part muscle.........so humor quickly jumped back into my life.  My boob needs to heal soon because it is becoming obvious that the shower can no longer contain my dancing and I need to go out, soon.  Because the next time I slip, I will probably take the shower curtain down with me. 

In my previous blog you saw pictures of my radiation burns. I discussed the lack of support I received during treatment and the inability for my nurse to do anything helpful.  Google and blogs were my radiation oncologist, the things that people posted and discussed probably saved my skin (TBD) and my sanity (also to be determined).  Even when I asked the nurse about things I read to use, she diverted the question.  I had Aquaphor suggested by her, and if I wasn't going to use silvadene there was no other words of wisdom spouting out of her mouth.  I am honestly surprised she can tie her shoes......come to think of it, I think they were Velcro.  awesome.

So here I am, a few weeks out of treatment and sloughing off skin like you would not believe.  I am using Domeboro soaks (which are amazing and found at any pharmacy), Cool Magic Gel Pads which are little miracles (bought online at www.mpmmedicalinc.com).  They are expensive as hell, insurance doesn't cover them, but I would sell my house to keep these little pads of healing on my boob.  They keep it cool, they suck out all the liquid that is leaving the open wounds, and they are breathable.  AMAZING.  My face has been super dry since I started using them, and I am convinced that they are so good at what they do, they are sucking the moisture out of my face.  I went a day without them, because the new ones we ordered had yet to come in the mail, I was full of tears and pain medication.  I could barely move, and sleep was out of the question.  I am also using the prescription antibiotic ointment that I got from my dermatologist (obviously not from my radiation team because silvadene is their god).  I think I am healing, at least mentally, while my boob is doing its own thing, slowly but surely.

A week ago today I went in for a "skin check" with my radiation oncologist.  Lucky me, I got stuck with Velcro shoes, and I knew I was in for a rough ride.  Scott came with me, because I have had progressively violent dreams of slapping someone with a Cool Magic Gel Pad, so he is keeping me on a short leash--plus, I can yell, loud........and there was a time (in my youth....) I could make people cry pretty easily.  I was rotten, and she brings it back out in me...the frustration builds until it is seeping out of my eyeballs, my mouth, you name it and I just can't hold it in.  (I don't want you thinking I need anger management, in fact I use to teach it to people, so I have the tools, but now I feel more relatable to the chair smashers).

The first thing she said was "oh wow, I can tell it looks terrible from here" (as I pull off the mepilex covering) and once I removed the bandage she said "yeah...this is were we would use silvadene" (I swear, I can't make this shit up).  I showed her the antibiotic cream I was prescribed and that was it.  I told her I needed more pain medication, but to my surprise I wasn't seeing the doctor--in fact he wasn't even there.  So I went in for a "skin check" with a nurse who doesn't know what she is doing and she told me it looks bad and pulled the silvadene card, she didn't even write down what it looked like, or anything else I said other than the name of the antibiotic ointment..........I should have just lifted up my shirt at Fred Meyer and got a consensus about what they thought (things like this are why I am on a short leash, I get it).  Unimpressed, I asked her how I would go about getting the meds, she said Scott and I should go to a late lunch and then she would call me.  fuck.

So we went to lunch and I got a call (about 30 minutes later; total appointment time 1 hour 15 minutes) the first thing she said was "we have never written a pain mediation prescription for you here, you must have gotten it elsewhere" FUCK. I informed her she was wrong (I have gotten 2 there) and it is probably not in my chart because they never write anything down! She said she would try and figure it out.  Scott and I headed to the house to pick up the prescription bottle I have that was written by my doctor and on our way to the office she called again "turns out all I needed was the name of your pharmacy" (I gave it to her in the first conversation).  FUCK.  (appointment time: 1 hour and 45 minutes).  Scott went in to pick it up because we were both certain I would try to give her a very large papercut.  I looked at the prescription, it was wrong. FUCK FUCK FUCK. really?!?  I am just saying that I probably could have bought some off the street in 5 minutes! (not that I would do that, but it definitely crossed my mind a few times).  I stomped in and asked to speak with the nurse, she doddled out and I told her it was wrong, she looked at it, asked to see the previous prescription bottle (thank god I grabbed it) and went back to the doctor.  So then I got a prescription for 10mg tables, instead of 5mg........so the fact that I am trying to taper down seems to have bypassed her. I had to buy a pill cutter and am cutting teeny-tiny pills in half (losing most in crumbs).

She also told me that I had to come back Thursday, a few days from then, to see my doctor.  I thought that was what I was doing at the appointment in the first place....wow.  I made an appointment, while that was going on the nurse was very heavily implying that I was either abusing the drug, or selling it (fyi I am not).  I am not underplaying prescription drug addiction by any means, it is a very serious concern, especially with young people.  But when I have by entire boob skin peeling off, and have no other form of pain relief, I will bite off your finger for a pain pill.  Without taking the pills I can not get out of the bed in the morning without Scott's help.  I cry and can't move my right arm, I can't type, I can't wear a fucking shirt.  I have taken pain medication many times throughout my cancer journey, and there was one point where they wouldn't even work, I was in so much pain.  I feel that it is important for that to be recognized, I just highly doubt many cancer patients end up getting hooked or are selling them after their radiation or chemo appointments................come on.   I was highly offended, talk about holding back a punch. I was really close to loudly whispering to Scott "these will get us $25 on the street".

I made the fucking appointment (after my 2 hour and 30 minute appointment).  Two days later, I canceled it.  I refuse to go back there for care.  My blood pressure rises just thinking about it, I honestly (other than the radiation itself) have received no help or support.  Scott can be my doctor, I may try the Fred Meyer poll, and Google is my nurse.  I am planning to have my medical oncologist check my burn instead.  I also have a great primary care doc and wonderful plastic surgeon.  I called and told the radiation office I would be taking my follow-up care elsewhere, I also left a message on the nurse-line, that I would not be seeing them for follow-up care, and I planned to write letters to the administration and do everything in my power to let people know not to receive treatment there.  It just reminds me that others don't have the support I do, I am so lucky to have people in my life that value my health and care and recognize my need for change.

So I am a rogue radiation patient, healing my way.  

Sunday, May 22, 2011

burn baby burn

I have hair!!
~~warning: there are boobs and burn photos in this blog~~ I apologize for not writing for awhile........it gets to a point where it has been so long, I feel a crazy-like pressure about whatever post I write next. Well I got over that, and I have also decided that I need to post more often, I am also taking pain medication, so the thoughts don't come as quickly as they normally do--apologizes for typos in advance. 
Last Sunday I went to the ER. Saturday night I started to have pain in my right lower abdomen and my lower back on the same side, and it began to get unbearable.  So Sunday Scott took me to the ER, I found out I had a bladder infection that spread to my kidney, a inflamed cervix (no worries, I am STI free) and a hernia above my belly button.  WOW.  They gave me antibiotics for the infections and said to go my doc if the pain didn't go away.........it didn't. My doc sent me to get a pelvic ultrasound (insert flashbacks of my fertility treatments here). 

burn baby burn
The ultrasound tech was a bit of a bitch.....well a lot of a bitch.  I had a CT scan done at the ER to check my appendix and it had come back clean.  I told her I was there to be sure my appendix was okay and she said "well I only can see it if it is really swollen, or you are a 5 year old" (not my fault, talk to my doctor lady).  So she did the ultrasound and tears were coming down my face because it hurt so bad. Scott was sitting in a chair in front of me helpless as the tears kept rolling down.  The tech was so condescending I wanted to take the vaginal ultrasound wand and smack her in the face.  I was in too much pain to deal with her skinny, high-horse attitude.  Now to the results:

The results showed that I have a hemorrhagic cyst  (filled with blood) in my right ovary-no appendicitis!  We have a dilemma because those cysts are usually treated with birth control, but I can't take birth control due to my tumors being estrogen positive.  There is a small chance that it could have been caused by Tamoxifen, which I have to take for 5 years (and there is no way I am going to stop taking that) so we sit and wait.  The ultrasound my gyno did showed that the blood was leaking and going into my ovary, so he thinks it is healing on its own this time.  These cysts tend to return very frequently, so if another one comes I am considering surgery very heavily.  The pain has now dwindled down to a menstrual type cramp, so I think it is on the way to healing.

my 36th day
Monday was my last day of radiation, Day 36!  I was in so much pain from my bladder infection I thought I would skip it.  But I brought a pink feather boa and wore it for some pictures on the radiation table.  Scott came and got to see the radiation gizmo and then I rang the bell in the hallway 3 times to inform the staff I had completed my treatment.  It was a great feeling! 
my big bad burn
It feels good to be done, but now my boob continues to burn.  I have a lot of nasty business happening on my boob and it is NOT pretty.  Our sheets and pillows are covered in grease from the Aquaphor, antibiotic medication, and burn medication.  Scott has also banned me from showering when he isn't here because I hurt so much sometimes I fall down....and then can't get out of the tub.  I guess he has a fair point.

I went to see a dermatologist because I was receiving no help from my doctor or nurses at radiation, I mean NO help. I have a family allergy of sulfa (meaning my mom was in the hospital and almost died....terrifying) so I can't use silvadene..........and they never offered me another option, no creams, no nothing.........I did a lot of Googling and when I brought up what I found they never offered any of it (they seem to be treating patients with protocols from 10 years ago).  The dermatologist, who was probably 200 yrs. old, well, old enough to pick his ear and then flick the pasty ear goop in my direction, was very surprised that they never offered me another antibiotic based cream, he said my burns were some of the worst he had ever seen, and 200 years is a lot of experience.  He prescribed me another antibiotic cream, took a swab to check for a staph infection (yep, it is that bad), and gave me other tips.  It was more than I have ever got, even when I was armed with questions, from my radiation oncologist.

I made this one big, so you can see how far my burn goes back

I finally got to ring the bell!  I am DONE with radiation!
I just want to heal.  I will fight through the infections, cyst and whatever the hell is happening to my boob and then I can begin the healing.  I am pretty sick of life handing me lemons, I don't like lemonade, even when I had vodka. I would like to start receiving cranberry juice instead.

Wednesday, May 4, 2011

a hole where my armpit was...

They added 3 more boosts of radiation, and just happen to forget to get to tell me..........customer service anyone!?!  Come on, when you give someone going through what I am going through an 'end date', try to keep it that way.  May 11th had become my focal point, I could see it, it was within reaching distance, most importantly I could count it on 2 hands......3 more days may not seem like a lot, and in the large span of things I know it isn't, but now I have another weekend of laying in bed trying to be careful to not have any more skin fall off.......then I have Monday, May 16th.......can't count that on 2 hands from today.

I am riding the pain roller coaster, which is unbelievably frustrating.  Some days I am up and doing stuff, sans shirt, but up--all gooped up and doing stuff.  Then I am awaken in the middle of the night with the same shooting nerve pain that I had after surgery, the radiation has irritated the nerves and they are literally firing back.  Poor Scott doesn't know who he is going to wake up to, the Dori who calls him on the phone (because he is out doing something productive) for him to bring me coffee in bed, I am perky and happy and make a joke about how large his head is.............OR the Dori who can't move, needs help to get herself out of bed, the thought of coffee makes her nauseous, and the pain meds make it worse...........this is a tough road for him too.  And you should see the kid do laundry....he is becoming a pro!

~~breast pictures below~~

Here are some pictures (though they don't really do the pain justice).  My armpit, which now has a hole, started with pain all over my chest and upper arm, like an internal bruise....then the visible burn started to show.  The pain is unbelievable, and it is very hard to keep that area from not moving....

Radiation fields and you can see a bit of my lymph-sleeve
My armpit April 14....not too bad
April 27
You can see the hole I now have in my armpit....taken yesterday
Aloe is my best friend

my "boost" lines