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

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.  

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.

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

rainbows at midnight

This is not The Lion King, I don't feel like I need to learn about 'the circle of life' anymore, and being a grown-up isn't all it is cracked up to be.  Last week was a roller coaster and I am honestly surprised I have came out on the other end of it in one piece--and not even an ER visit!  We drove to Okanogan to see the family over the weekend--a car trip with a burnt boob, achy armpit, and a dog that can't handle a car ride can really be exhausting.

We lost my Grandpa Charlie this past week.  He passed in his sleep, it was very unexpected. Even typing that makes tears well up in my eyes so quickly I can't even blink them out.  I think, actually I know, I have one of the strongest families I have ever met. We bond over triumph and grief and we have had a lot of both for our lifespan.  When you are going through life and loss hits you, it is like a gut punch, one you can't recover from quickly...........you need to listen to your body and let it work its way out. 

I spent the weekend hearing stories from my Grandma, giving and receiving lots of hugs and spending time with family, many of whom I haven't seen since I was diagnosed last summer.  What a sad circumstance, but being surrounded by loved ones is the way to grieve.  My Grandma Lou is hands-down one of the strongest women I have ever met (I think she may be tied with my Mom).  Just being around her makes me appreciate my life in a way I haven't in a long time.  When you see someone grieve, really grieve (and take care of everyone else around her) you can't help but take a snapshot of your life and put things in perspective.

When I look at my Grandma, I see my mom.  I see my mom when she was grieving the unexpected loss of my Dad. I see the family, as I saw my sisters and I--just grasping for a thread to hold onto somewhere.  You just float through the day, not really grounded or connected to anything--just there; your minds way of protecting you, if you handled the loss all at once, you would break.  And we were all broken, but together we became whole--a different whole than before....but we put the pieces back together and became who we are today.

Scott and I also suffered our first loss that wasn't extended (meaning we were hit so hard together, as a couple....then just a ripple effect for those who know us).  We had to put our beagle, Archer, down.  In the perspective of life, this may seem small to some people, but to us....it was our world.  In that 'snapshot' of life, I mentioned earlier, this was a decision that was far from easy.  He was our first baby, our first 'investment' we made together, he was who were were 4 years ago, for awhile he was our everything, but he became unbelievably aggressive. We knew it was coming, but we kept putting it off (for years) until he attacked me in the backyard last week.  He would go from the sweetest thing, to something I didn't recognize, I became terrified, and after researching all our options, and many hours of handholding and tears, we made our decision.  We were lucky enough to find a wonderful vet to come to the house, we were able to hold Archer while he was sedated and then passed, it gave us some closure..........but it is gut-wrenching, and I feel heavy with guilt and sadness. 

Last week was filled with loss, this week is filled with over-reactive emotion.  I need to be careful, talking good stuff about Scott may go to his head.....but I couldn't have asked the world to send me a better partner.  Our personalities are so different, but our hearts seem to be the same.  He can keep me grounded when I feel like I am going to fly off the handle.....and through the loss of my Dad, my Grandpa, and Archer he was my rock.  He knows how I work, how I react, and how I grieve...he has a way of just making things better--I am lucky enough to have a constant support in life--the kind of rock I can't move, even when I feel like rolling him down a hill....

When people talk about 'old souls' I wonder if that happens when a short life is stuffed with so much 'life experience' that they are bursting.  That their bodies and minds take all that experience and weave a pattern of wisdom that settles internally?   Will I wake up one day and be an 'old soul?'  Will I be lucky enough to have all of this (all the shit that is going on around me, in the world, in my life, in the lives of my friends and family) make sense and be settled and grounded? Will I be able to create paths of wisdom for others to navigate during a time of crisis, of loss, of cancer, of life?  

I sure as hell hope so.

put some aloe on it

I would like to thank everyone on Team Dori who participated in the Spokane Susan G. Komen 5K today.  It means so much to me, you are all incredible! Next year, I will be there with you.

Tomorrow will be Day 16 of radiation....almost half-way there.  I wish I could say that everything is rosy, but I am working with a burnt boob.  I have found that if I layer aloe on it after radiation, layers and layers, it doesn't hurt as bad the following morning.  And those layers eventually get dry and stringy.....pretty gross.  I no longer enjoying wearing shirts, and it isn't because I look good topless (working on it) but because it hurts SO much to wear a shirt.  The sleeve I am wearing to help prevent lymphedema stops right at the top of my arm, so it rubs my armpit and I have fluid that builds up in there--all of that ends up causing pain--so I am having to take pain medication to get through the day....and even with meds it is still pretty uncomfortable.  I am not too tired, I am sleeping-in more than before, but I haven't hit a wall of exhaustion. 

I feel somewhat useless when I lay in bed with aloe on my boob and the fan blowing on me.  I can't really do anything because the aloe/lotion mixture I have concocted on my boob smears all over my lymphedema sleeve, stomach...it spreads like chicken pox and leaves oily stains everywhere.  The weekends are such a welcomed break, I love looking at the clock at 3:30pm and NOT being at radiation, a sense of satisfaction. I had to stop using the treadmill (sports bras are not my friend right now, and no matter how still I try to keep my arm, I end up being in more pain when I am done--and I can't stop treadmill dancing........so my arm occasionally does a fist pump or a shimmy) so I am going to be using an exercise bike--I am going to continue with my commitment to be healthier and I refuse to let a little sunburn (feel the sarcasm?) stop me.

And I am hoarding aloe like it is gold.

Me: "Look at this blister!"
Scott: "Wow, you must have put your socks on wrong..."

when it rains, it pours

Two weeks of radiation down, 3 1/2 to go...........

When I made my plan on how I was going to approach radiation I said I would blog when things were fresh.........rather than hash them out a bit and then piece something together.  Believe it or not, I usually don't feel my posts are too raw....I think they are edited. But in that process I usually end up having to be emotional, and caught up in whatever it is that I am processing, for too long.....so this time I am going to try just putting it out there, no processing....it's like a projectile vomit blog--it just happened.....

I won't be able to be pregnant. I won't be able to give birth. Mommas and babies are my life, literally my job, my passion, my cause.  And it was taken away from me.  I am having a hard time getting passed this, or processing this, and then I have weeks where I feel fine. 

I am steadfast in knowing that you don't have to give birth to be a mom, that families are created by a wonderful mix of love, unconditional love that doesn't have to be biological. That family members can be people who you chose to bring into your world.


I am not sure the root of this fear, this disappointment I feel in myself............how am I going to continue to work with women in the same capacity, eventually someone is going to ask how many children I have. What was my birth experience like? How did I work through postpartum depression? I won't have the answer they are looking for.  I have this inner urge to mother, to supply the unconditional love.....I just can't double the estrogen in my body, my cancer feeds on estrogen.........that would be a selfish decision on my part.  I won't have a baby and increase my chance of cancer......Scott and our new family doesn't deserve that.  So I feel lost, like I am swimming and swimming in the dark.......unable to see the shore and I am getting tired.  My oncologist says "roll the dice," that women my age are encouraged to "have their families" and then "have your ovaries removed"............but I don't feel that "rolling the dice" is the way to start a family.

I know there is a life plan that I fit into, but I am pretty fucking sick of not knowing what it is.  My life is full of amazing people and I am driven and encouraged by them. I would do anything for Scott, and though we haven't discussed it, I am so sorry that because he chose me for his life partner he has to deal with all my baggage...............and my biology.

I feel alone.  I feel jealous.  Jealousy will eat away at your being, at who you are......comparisons are pointless.  I know this, professionally I know this, and personally I have never been someone who gives a shit what people think.  But I find myself comparing myself to others like I have never done before.  I feel damaged and not up to par....just not measuring up.  I am getting my mind back after chemo, my chemo brain is slowly fading and I am finding myself having an internal conversation that I haven't had before. It is unbelievably frustrating.  You would think that I would feel triumphant---I went through hell and back and I am here in one piece........but instead I am picking apart those pieces with a negative eye.................ridiculous.  As a whole, I am too hard on myself.  I know that negativity breeds more negativity so I try to focus my attention on the positive, but now, more than ever, the negativity is sneaking in.

I know it began when I had to chose radiation or not.  I went a few steps backward, but I made an informed decision that Scott and I both agreed on.  We powered through, which is what we do.  We are a couple that plans, we want data, we want to know how our life will look, we thought we knew....then we were slammed with the cancer truck.  Then we refocused, then radiation.  And now that is my job--doing my best to get through radiation, taking care of myself, and working out the kinks in my brain that cancer created.  It's messy.

So I am a hot mess.............literally, my radiated boob and armpit are on fire.