My Advice #4, #5, & #6

My Advice (cont.)

#4: Know you will be unprepared for chemo – you can read about all the side effects, but it doesn’t matter when you are in the midst of it.  The first 3 weeks of chemo I lost my eyesight, everything was super blurry.  I had planned to sit on the couch and catch up on tv shows while I had the house to myself, but soon realized I couldn’t see the television and all the blurry movement made me sick.  I felt like I was on a small boat in perpetually turbulent waters.  It was the worst seasickness of my life and the closest I was to water was standing over the toilet.  The television was off for good.  Even trying to read made me nauseas.  You may experience the same thing, or worse, or not at all. 

#5: Journal, write, blog – this is advice I would never have imagined giving.  Journaling and writing about my feelings?  What am I, a girl? What is this, second grade?  I don’t need to keep a diary.  Actually, this blog has been the most unexpectedly pleasant surprise.  I was encouraged to try it and figured what the heck.  I had no idea I would even have anything to write about until about a month or two after my diagnosis I couldn’t sleep at night so I grabbed the laptop and began writing.  Who wudda thunked I got so much to say and rite about?

#6: Don’t plan to lose weight – sorry to break it to you, but you may actually gain weight.  Don’t hate me; I’m just the chubby messenger.  You can blame it on the steroids, crazy amounts of medicine, upset stomach, confused appetite, fatigue, and long stretches of inactivity, among other things.  You can also blame it on the doctor’s, but they don’t like that.  They are just trying to “help save your life” and you shouldn’t be worried about your weight, you just need to worry about “getting better.”  How can I worry about getting better when my favorite jeans barely fit? 

My Advice #1, #2, & #3

My Advice

Having gone through this cancer experience I do have advice for people out there.  My advice is quite simple really…Do NOT get cancer.  I told you it was simple (see the anti-cancer campaign posters from previous post if you like visuals).  That’s it.  That’s the advice I have for you.  Please share with others, free of charge.  You are welcome to share this advice with your children, parents, neighbors, coworkers, Walmart employees and shoppers; anyone.  You are very welcome.

What advice do I have for someone who has already been diagnosed with breast cancer?  Um, first of all I am a bit disappointed that you didn’t listen to my original advice.  I don’t know why you ask me for advice when you clearly don’t take it, but here goes.

#1: Permission to feel ________.  Allow yourself to feel whatever emotions you have.  If you are feeling scared, it’s okay.  If you’re feeling sad, that’s alright.  If you’re feeling disappointed, let it happen.  If you are feeling angry, helpless, crabby, confused, hungry, etc., just give yourself permission to feel it.  You might even feel guilty, but don’t let yourself feel guilty for having so many feelings.  You may have days when you have all these feelings within a span of a few hours.  If that’s the case, I suggest you also allow yourself time for a nap.

#2: Learn to like the color pink!

#3: Take “before” pictures.  This one might sound strange, but I’m being honest.  If you have a bilateral mastectomy (as I did), take a picture of your breasts before they are removed, even if you are not that fond of them.  Take a picture because soon they will be gone and when you have the expanders filling your chest, you will long for your old breasts again (no matter how big, small, saggy, etc) and you will forget how real boobs look and feel.  If you have chemo (as I did) and you know you will lose your hair, take a photo of your hair before it falls out.  Take close-up photos and photos from a distance.  These will be handy when you forget how you used to look.  Don’t forget to take close-up pictures specifically of your eyebrows and eyelashes.  You may end up missing these most of all.  (Actually just carry headshots of yourself pre-cancer.  Then the next time some stranger gives you the “oh poor sickly looking thing” look, you can pull out the picture of your old self and brag about how you used to have awesome eyebrows.  Depending on the day this might make you feel better or worse about your current state, please use this advice with caution.)  If you don’t think having photos will be helpful or you’re not comfortable taking these…I suggest you find a close friend who will let you touch and/or closely admire her breasts, hair, eyebrows, and eyelashes.  This is what friends are for.  Then when you have your new fake boobs you can return the favor.

 

More advice to follow…

Dr. Turtleneck

Dr. Turtleneck

With my drains being in for much longer than I expected and radiation being delayed, I am feeling very frustrated.  The doctor also said that I have to be extremely careful being in the sun so as not to make my burnt radiated skin any worse than it is.  I will need to be covered.  He has cleared me to wear a short sleeved turtleneck (this is a slight exaggeration) for the entire summer so if you know where I can get one of those please let me know.  I’d like an assortment of colors.  After Dr. Turtleneck has explained to me that my summer will be ruined because I can’t swim or be outside without being covered, I begin to feel very stressed.  I have had too many doctors’ appointments this week and I’m tired.  I decide that I just want all of this to be over.  It has been nonstop since October and I want to be done.  I just want to call it quits.  I want things to go back to normal.  I want to go to the pool and swim with my kids; I want to be out enjoying the sun without having to cover my chest cavity, right clavicle, and the lower half of my neck. 

My mom calls after my appointment and I don’t answer.  I know I will cry through the whole conversation so I let her know (via text) that I’m not really in the mood to talk and I will call tomorrow.  Now my frustration and stress from cancer has trickled over to everything else.  I am suddenly furious at how disgustingly dirty our house is (it is not), how much laundry has piled up (the normal amount), how loud the kids are (moderately loud), and how tiny our house is (it actually is really tiny).  The walls are caving in on me.  I am stressed. 

I call my mom back the next day and she can sense how stressed I am (it could have been the whining, crying, or saying “I’m so stressed” that gave it away.)  She immediately wants to help and her and my dad offer to come for the weekend to take the kids.  She asks me if that will be helpful.  Uh, yeah it will.  So that’s what they did.  I was still on bed/couch/lawn chair rest, Jeff cleaned our house and did the laundry, and my parents took the kids to the zoo and swimming at a hotel where they stayed for the night. 

Looking on the Bright Side… it's nice to know the always stylish turtleneck dickies are an option.  I'm sure it will look especially great at the beach.

Temper Tantrum in Radiation Oncology, Room 3 – May 15th

Temper Tantrum in Radiation Oncology, Room 3 – May 15^th

So I went to see my radiation oncologist.  I met him back in November when I discovered that radiation was going to be part of my treatment plan.  Right now I am more nervous about getting “off schedule” than I am about the actual radiation process.  I am pretty sure there is a section in my chart warning all the doctors of my hyper vigilance to stay on schedule.  I like to think I am a pretty good patient overall.  I don’t make much of a fuss during my treatments, surgeries, and appointments…until they mention things getting delayed.  Then I begin to panic just a bit.  I have a little temper tantrum in my brain and I’m like a 3 year old who is upset at having to put on some pants.  My lower lip pops out in a big fat pout, I cross my arms to make it clear that I’m not happy, and smoke begins to shoot out of my ears.  I have it in my head that treatments will be over by the end of June.  Since my drains have been in longer than expected, radiation is delayed.  In my whiniest voice I think “but I set up the appointment already.  I called and said I wanted to start radiation on May 20^th”.Whaaaa!”  This is not going as planned.  I still have to go to the assimilation visit (where they create the mold for my body and begin calculating angles and placements of beams so as not to accidently zap an organ), then I have the verification visit (where they verify that the beams are hitting the correct area and none of the surrounding organs), and then I finally have my first of twenty-eight treatments.  Basically, this means that I will not be done with treatments at the end of June as planned.  Cue crossing arms, pouting, whining, and smoke. 

Looking on the Bright Side…I do appreciate very thorough doctors and nurses.  I do not want to be writing a blog post about an accidental zap of my lung. 

 

My Fluid Filled Fanny Pack (aka "Drains")

My Fluid Filled Fanny Pack (aka “Drains”)

Oh how I hate these drains.  After my reconstruction surgery I had two drains (one on each side of my body) placed to collect gross fluid from my body.  The drains are really uncomfortable and icky and I am scheduled to get them out 8 days after surgery.  As I write this, I am going on day 20 and the stupid drains are still in.  They continue to collect fluid so I can’t get them out yet.  They are becoming more painful now and I desperately want them out, like yesterday.  I considered naming them since they are with me 24 hours a day, but naming them seems too personable and I don’t want it to seem like I want them to stick around.  I want to make it very clear that I do not like them.  So these unnamed drains continue to be part of my body.  I have given up trying to hide them.  When I pin them to my bra, it is obvious that I have some strange shaped object under my shirt.  So instead, I just pin them to my pants.  It’s not a pretty look but I really don’t care at this point.  I walk around with what looks like a strange fluid filled fanny pack dangling on my waist.  I have gone to the kids’ school like this, to the store, out to eat, to play outside with the kids, etc.  I am pretty sure I am not the only one who wants these drains removed.  My kids, husband, neighbors, and strangers are also probably eager to not have to look at them anymore.  My doctor put me on bed/couch/lawn chair rest until I have under 15cc’s of fluid filling my fanny pack.  I am still at 50cc’s and I go back tomorrow.  I’m afraid my farewell to said drains may not be happening yet.  So Frustrating! 

Looking on the Bright Side…I have gotten pretty decent at giving myself a shower while holding the drains.  One armed showers are quite difficult, you should try it sometime.

Angelina What What?

Angelina What What?

So I am sure you have heard the surprising news about Angelina Jolie privately getting a preventative mastectomy done.  Now I have so much in common with her, it is just beyond comparison.  I mean we have both had a bilateral mastectomy with reconstruction surgeries, we kind of share the same name, we both find Brad Pitt very attractive, and…okay, I really thought that list might be longer.  I suppose I don’t have much else in common with Angie.  Anyhooo, there has been a lot of talk about her decision and I understand that when you’re a celebrity you are vulnerable to criticism from everyone, whether it is right or wrong.  People feel the need to share their opinion even if no one asked them for it.  So annoying! 

What’s that?  Oh, you want to know my opinion on the situation?  Well, since you asked, I shall share my opinion.  I think that Angelina made a very difficult decision to undergo the surgeries knowing that she carried the BRCA1 gene. 

(Click on the link if you are interested in learning more about this gene mutation. http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA)

I think her decision was a very personal decision and I think if I had lost my mother to cancer and then knew that I was at a significantly high cancer risk, I would probably do the same thing.  Knowing how difficult the surgeries are, I would still do it if it meant I could avoid chemo!  And being a mother (oh we also have that in common, even though she has 3x the kids and I do) sometimes means making difficult decisions for the sake of your kids.  If nothing else, I do think it is good that people are having discussions about their health history and are more breast aware.  I also think it is important to note that there are numerous options for women out there that may have a family history of breast or ovarian cancer or worry that they have the BRCA gene (which is a very low percentage of people.)  Preventative mastectomy surgery is probably the most invasive. Pretending to understand this

 

is probably the least invasive.  I think it is unfair for people to judge her too harshly.  People just feel they have the right to insert their opinions, when sometimes they clearly don’t.  Gossip!  What’s the point?  Since we are talking about gossip, I think Angelina is way too skinny.  Oh and I am honestly still shocked that her and Brad are still together!  I never thought that was going to last.  Good for them though.  But, what do I know?

Looking on the Bright Side…I was tested for the BRCA1 gene and it came back negative.  Phew!  That means that my parents, siblings, and kids most likely don’t have it either,

The Anti-Cancer Campaign

You know all those anti-drug slogans that you’ve seen and heard over the years “users are losers”, “just say no”, "friends don’t let friends drive drunk”, “say no to drugs, say yes to tacos”?  These are (mostly) effective ways to keep people from trying drugs, right?  However, I find the anti-drug campaigns with pictures to be much more effective.  The pictures of the heroin addict…at the morgue, and the anti-drug slogan from the 80’s with the eggs (cue picture of a nice whole egg “this is your brain”, cue picture of the egg frying in a pan “this is your brain on drugs.”)  My favorites are the before and after photos of meth addicts.  The” before drugs” photo shows a lovely young woman with a full set of teeth showing through her lively smile.  The “after drugs” photo shows a woman who looks as if she has aged 20 years during her 2 years as a meth addict.  She is no longer smiling but you can kind of still see her teeth, and the teeth that are still there are disgusting.  Her once youthful face is now sunken in and full of nasty scabs.  I don’t know what happened to her hair.  And of course the eyes, she now has the trademark meth addict crazy eyes.  These photos scare me enough to never ever try meth.  I find it to be a very effective campaign. 

I look back at pictures of myself before cancer and it reminds me of these anti-drug campaigns.  When I see a side by side photo it’s like an anti-cancer campaign.  My “before cancer” picture shows a young woman with a head full of hair, a healthy glow, and cheery demeanor.  The young woman is beautiful and has a full life ahead of her.  The “with cancer” photo shows a pale, very run down, hairless, pajama wearing version of the same girl in the before picture!  You wonder how a person’s appearance can be so dramatically different.  Like the meth addict photos, it’s frightening.  I could be the anti-cancer campaign poster girl.  Do you see this woman?  Do you want to be like her?  Then just say NO to cancer.  The problem here, of course, is that you can choose whether or not to do meth but with cancer you don’t have a choice.  Cancer chooses you.

Looking on the Bright Side…Maybe I can at least use this to scare people into doing self-breast exams.

 My vision of the Anti-Cancer Campaign Posters

(It's meant to be funny, so go ahead and laugh.
I found bad photos and made them worse)

This is your life...this is your life with cancer

Don't let your friends get cancer

Just say NO to cancer

 

 Do your self breast exams...or this could be you

Isn't That Crazy? My Wish for the Future

Isn't That Crazy? My Wish for the Future

I find myself reminiscing with Jeff and sharing with our kid’s stories of our past.  My kids were shocked to learn that when I was a kid, Siri didn’t exist; (gasp) cell phones did not exist.  In fact, the phones we had in our house were attached to the wall.  And it stayed there.  And there was a cord attached to that which prevented you from going too far…unless you were lucky enough to have a super long cord that allowed you to stretch and take it into the next room.  And remember when you had to go to a movie store to rent a video?  You might get there only to find that all the copies of “Adventures in Babysitting” and “Mannequin” are out?  The horror, remember that? 

My hope is that someday I will be able to tell my kids or other youngsters about what people with cancer had to go through.  I hope that kids will be shocked to learn that “back in the day” I had breast cancer and had to have my breasts removed!!!  I hope they will be stunned to learn that the medicine I had to take made me lose all my hair!!!  Can you imagine?  I hope they are horrified to hear that I had to get radiation therapy, where they used a machine to deliver a high dose radiation beams to my body!!!  I had to go through nine long grueling months of treatment.  Isn’t that crazy? 

I am so thankful for the modern technology that I have available to me, but I pray that technology and medical advances continue to the point that what I am going through now will seem barbaric and ridiculous in the future.  Maybe even the fact that I had something called “cancer” will seem crazy (when talking to those younger than me I may consider switching “crazy” for “cray-cray” to sound more hip).  I hope to be able to include this story to any “can you believe it?” conversation.  I hope to be able to share this experience in this same way that I will tell my kids about a time before vaccines virtually eliminated many diseases that can lead to life threatening illnesses!!!.  That there was a time before anesthesia and epidurals!!! That white people and black people lived in a segregated society!!! That people used to live without a washing machine and a dishwasher!!!  There was a time before digital cameras!!!  Remember taking pictures with a camera; we could only take a limited amount before having to change the film and we didn’t even know if the pictures turned out until after we went to the store to have the film developed and pay for the photos!!!  Now that’s like totally cray-cray!  Am I right?

Looking on the Bright Side…I will be very happy to sound (and be) old and share my horrific cancer stories if it means that others don’t have to go through the same thing.

Memories: The Good, Bad, Bald, and Ugly

Memories: The Good, Bad, Bald, and Ugly

In the beginning I had very mixed feelings about wanting to record and remember this time in my life.  I have since decided that I do want to have these memories even though it’s not exactly a “Kodak moment” kind of time and they will be tough memories to have.  It’s kind of like my tween years, I guess.  I have the photos to remind me of those times even though I sometimes wish there was no physical evidence of my awkwardness and steady rotation of outfits that I thought were awesome at the time.  But my favorite music note sweater (with shoulder pads), neon “Hit the Beach” t-shirt, and colorful silk shirts are part of my past now.  I’m not going to lie, there are times that I wish pictures of me with a perm that made my head look like a triangle, my accessorizing skills the likes of an 80 year old church lady, large pink glasses, crooked teeth and braces didn’t exist, but they do.  However, behind all the triangle head hair and dreadful earrings and outfits are great memories of being a kid. 

I hope I will look back at this time in my life and know that although I now have NO hair, a steady rotation of sweatpants, robes and pj’s, this is now part of my life.  Some good memories have slipped in and I know that although I will wish that the photos of me looking sick and feeling horrible didn’t exist, they do.  I hope to come out of this a stronger person and maybe I will be proud of myself for getting through it, just like the tween me. Unlike the super uncool fashion sense of young awkward me, maybe these photos and memories will turn out to be inspirational.  I hope there is a happy ending to this story.  Only time will tell.

Looking on the Bright Side…my accessorizing skills have come a long way.  I now have a large collection of age and event appropriate jewelry.  Unfortunately, I haven’t been able to wear them as often as I would like because too much jewelry with my head scarves make me look like a fancy pirate. 

The Big Reveal

Returning Home – May 1^st 8pm

It has been a long day and I’m finally home after having surgery.  I go to change my clothes and realize that I wasn’t going to be able to enjoy my new boobs just yet.  My entire stomach and chest were completely bandaged up.  I couldn’t even see them.  It’s like a kid seeing a present with their name on it under the Christmas tree, but having to wait to open it.  I want so badly to unwrap it and take a peek.  I am convinced that under all that bandaging there lay the most amazing set of breasts just waiting to be gawked at.  My instructions though were to leave all the bandaging on for at least 48 hours.  I’m a little bummed that I have to wait 48 hours to see these incredible new boobs, but I have waited over six months already so what’s two more days?  I am in a lot of pain but it is encouraging to know that I finally have them; breasts.  They are brand new and better than before.  I’m so excited to see these new perky and beautiful boobs that I have been promised to me by my plastic surgeon.  I can’t wait to unwrap it and see how it looks! 

Finally the 48 hours are over and I get to see them.  Jeff is with me.  Gosh I hope he’s ready to see this.  I’m not sure that he’s prepared to see such spectacular boobs.  I carefully unwrap the bandages, remove all the gauze and padding, and take off the special mastectomy bra that I woke up wearing.  Drumroll please, this is a very special moment.  The moment I’ve been waiting for…(imagine hearing the drumroll and seeing a beam of light directed at my chest as if I am on stage and they are the star of the show.)

Wait.  What?  This is not quite what I was expecting.  I had a very specific image in my head and this is not it.  My new boobs look weird.  They are very round and very big and don’t look all that different from before.  I have stitches all along the top where the surgeon transferred some fat from my stomach for a more natural look.  I have the sharpie markings from the surgery still on me.  I have two drains and long tubes coming from both sides of my body.  I have new incisions covered with yellow xeroform tape running under my breasts.  I have a small bandage on my stomach from the "fat transfer" incision, but it is hardly noticeable because my very swollen stomach is covered with huge bruises.  Hmm.  Okay, this is a bit disappointing.  I realize my vision of looking like a Victoria’s Secret model from the chest up (beautiful lacy bra included) was a bit unrealistic, but this is bad.  Very bad.  I am a mess.  I now realize that it’s just going to be too difficult to see their beauty behind the dried up blood, swelling, stitching’s, tape, tubes, drains, and black marker.  I guess I will have to wait another week or so.  Maybe I will keep my expectations a little less dramatic and a little more practical.

Looking on the Bright Side…they may not look great yet, but they feel pretty good.  It’s nice to be able to touch my breasts and feel a bit of softness. 

my mom stayed with us for part of the week as I recover

 

Surgery Part 2 of 2

Surgery Part 2 of 2 – May 1^st

I had the second part of my reconstruction surgery done.  I can finally get rid of those terribly uncomfortable expanders.  I understand that this surgery is significantly easier than the mastectomy and the recovery is only one week.  So I’m not exactly sure what I expected, but it has been harder than I thought.  I knew that I wouldn’t be walking out of the hospital looking like Sophia Vergara or anything but I also didn’t expect to have to be escorted out in a wheelchair looking like the hot mess that I was.  I guess I was so excited to get my new breasts and I have waited so long that I kind of was at least expecting to walk out of the hospital with people admiring how my breasts looked under my sweatshirt.  Spoiler alert – no one did.  In fact, I left the hospital in such a haze that I really don’t remember much other than waking up from anesthesia and telling the nurse how much I hated cancer and her replying “I know honey, I know” and feeling very sore and seeing those stupid drains again.  The doctor did warn me that I would have the drains again for a week, but seeing them pinned to my surgical bra brought back a lot of memories.

       

 I get some good drugs to help relieve some of the pain and go to the recovery room where Jeff is waiting for me.  It is about 6pm and I haven’t had anything to eat or drink in the last 18 hours and I desperately want some water.  I must have gotten some heavy drugs because I don’t remember much from here on out.  I remember trying really hard to keep my eyes open, at least enough to drink my water, but that proved to be difficult.  I was nodding off while trying (unsuccessfully) to get the straw to my mouth.  Jeff took some pictures, he’s always so thoughtful.  I want to go home, but I’m so tired.  I’m so relieved this is over.  I finally have boobs again.  I can’t wait to check them out.

Looking on the Bright Side…I have an excuse to wear a robe all day long!

so close