A Blogging Hiatus

A Blogging Hiatus

When I started this blog I had no real expectation other than to keep a few people updated on my health. I figured people who were interested, could check the blog and I wouldn’t have to shove my boring doctor’s visit stories into people faces via Facebook. I didn’t anticipate that I would really even have much to say. I soon realized that writing about my experience was therapeutic for me and it truly was a nice way to keep people informed. It also became a way for me to give a voice to breast cancer. I had known people who have been through cancer and treatments but I didn’t actually know what it involved and how incredibly scaring, overwhelming, and crazy it all is. People know the statistics but not always the everyday struggles that go along with those statistics. I was admittedly naïve and under informed about breast cancer before I got thrown into it.

I was shocked at how many people were reading the blog and even more shocked at how many people enjoyed reading it. It was a completely unexpected bonus to hear that my blog had inspired people. I could not be more pleasantly surprised with that outcome. Although I had not set out to do that, it makes me so happy to know that people have been moved by my words and my story. The blog has received over 40,000 pageviews!!! It has been viewed by people all around the world. I appreciate all the support and very kind words of encouragement. I am hoping that I will not have a lot more to say on the subject of cancer, so I will most likely be taking a blogging hiatus. No news is good news.

Signing off.

Looking on the Bright Side...Life is normal again!

 

We Did It!

We Did It!

Ten years ago I married the most amazing man and we celebrated by going to Jamaica for our honeymoon.  We left our all-inclusive Jamaican resort with dreams to go back some day, maybe our five year anniversary.  That never happened.  In fact, a vacation with just the two of us (or with the kids, for that matter) never happened.  Life got in the way as did a lack of vacation funds.  Then one day Jeff and I swore we would make it happen.  We were determined to take a trip together for our ten year anniversary.  Just the two of us.  We decided that no matter what, we would go.  We were just going to make it work, nothing would stop us.  We even pinky swore on it.  Yeah, we were serious.  So as our ten year anniversary approached, we still didn’t have much of a vacation fund and we were trying to have baby number 3, but we were sworn by pinkies.  However, we didn’t plan for cancer.  Now what?  So, as required by law, we had to follow through on our promise.  I’m pretty sure pinky swears are legally binding. That’s a fact.

We figured we would make good on our promise, assuming that I had permission from all my doctors.  I must have tried to talk myself out of it a hundred times.  I found myself thinking we don’t have the money for this, maybe I should wait until I have a clean bill of health for a little while, we can’t afford this, vacations cost money and we have none of that stuff, etc.  As the hospital bills piled up, it was like a smack in the face reminder that a vacation was just too expensive.  We were barely able to afford this vacation (after ten years of saving) before cancer came along and cramped our already un-extravagant and un-lavish lifestyle.  But I put all those practical voices to rest.  Never before have I felt so deserving of a vacation.  Had the donations to the 'For Angie' website not come in, we would not have even been able to consider this trip post cancer diagnosis.  The donation money paid for hospital bills and MasterCard paid for Jamaica:)

July 21^st – July 28^th  We did it!  I was just 8 days out from radiation.  I wasn’t even sure that I would be able to enjoy the sun or swimming in the pool, but I wanted to get as far away as I could from the cancer center.  I wanted one whole week to not think about cancer.  I wanted one whole week to forget about everything we had just been through and for my husband and me to just focus on each other.  It worked.  Finally, things seemed to work in our favor.  My skin peeled and healed right before the trip.  I was able to spend all day at the pool or beach, swimming, reading, resting, drinking, and eating.  At night, Jeff and I would get dressed up and enjoy dinner and the resorts nightly entertainment.  It was fabulous.   I am so glad that we went.  It was well worth it.  And think of all the money we saved by avoiding all potential legal fees from breaking a pinky swear promise. 

Looking on the Bright Side…for seven consecutive days I put all things related to cancer out of my mind, except for the one fellow vacationer who graciously offered me some sunscreen after pointing out the strange “sunburn” on my chest and underarm. 

 

 

This is what I did all day. 

 A vacation to remember.

 

a "Bob Marley"



Life After Cancer

Life After Cancer

It has been a long hard nine/ten months.  I have been through a lot, including

·  3 mammograms

·  2 ultrasounds

·  MRI, CAT, PET scans, EKG, echocardiogram, chest x-rays, FISH test, Oncotype DX test, genetic testing, bone scan, IHC test

·  8 surgeries (3 surgical biopsies, bilateral mastectomy, immediate reconstruction, lymph node dissection, insertion of port, breast implants) and at least 2 more in the near future

·    6 drains

·    20 weeks – 16 rounds of chemo

·    2 blood transfusions

·    6 weeks – 28 rounds of radiation

·   At least 40 CBC’s completed

·   Treatment induced menopause

But, life is returning to normal.  I don’t have to take my temperature every day, I have to shave my legs and underarms again, I wake up with bedhead, I’m allowed to wear regular deodorant again, scarves are worn only around my neck, I have energy to run around with my kids again.  A good day is no longer measured by being able to stay out of bed for more than a few hours at a time.

I did have to go to see my family doctor the other day for something unrelated to cancer and as I was driving in to the hospital parking garage, I immediately drove into the reserved cancer patient parking section.  I realized then that there might be one thing I miss about cancer…awesome parking.  I figured I had still earned the right to park there but I discreetly walked into the hospital ready to defend myself if someone was planning to bust me.  I still have my port and I can use that as my cancer patient parking ticket.  Who needs a paper parking id/ticket when you have a surgically inserted catheter as proof? 

As my doctor is looking me over and kindly reminding me that I am now at a greater risk for a stroke, blood clots, ovarian cancer, and uterine cancer he asks me how chemo is going?  Chemo?  I think to myself, this is so weird that three of my doctors now have asked me about chemo when I am already finished with chemo.  I kindly remind him that I am done with chemo and have been for some time.  Then he tells me something I wasn’t prepared to hear.  The drug that I am taking (I have been taking it for a couple months already and will be taking it for the next 10 years) is a chemo drug.  Hold up!  I did not know about this!  Now, I have already been taking the drug for a while and the side effects have not bothered me too much so I know it shouldn’t change how I feel about it.  But, come on!  I go home and tell my husband about this obviously ridiculous news and as I tell him, I cry.  I tearfully explain to him what my doctor said as I also google the information to make sure it is correct and there it is…Tamoxifen oral chemotherapy.  What the heck?  Jeff tries to reassure me that it’s okay and I sob through telling him that I hate the word chemo.  Turns out, any drug that is used for cancer is considered chemotherapy.  I don’t know if that makes it any better or not.  Why do doctors have to ask how chemo is going, couldn’t they just ask me how the drug prescribed for cancer prevention is going?

Looking on the Bright Side…I thought I would be getting my port removed this summer but my surgeon said I should keep it for a little while yet and we will discuss it again in 3-6 months.  I guess until then, I will have my cancer parking ID still with me.

Neurotic vs. Naive

Neurotic vs. Naïve

I know I have mentioned this issue before, but it is more prevalent now than ever.  I am feeling very conflicted.  Is there a lesser evil of being neurotic or naïve about wellbeing?

Is it better to worry and consider the worst for every unusual symptom only to be relieved when it turns out to be nothing or prepared if it turns out to be something, or is it better to be naïve and assume that any unusual symptoms are actually normal only to be blindsided and completely unprepared for the worst, but happily unaffected until then?  I don’t know.  I need to find a balance between the two, I know.  I just don’t want to find myself in the same situation I was in when I was diagnosed.  I don’t want to see that look again from doctors and medical staff when they know the outcome is bad but it is obvious that I am clueless.  I don’t want to be blindsided again.  I don’t want to feel overwhelmingly shocked about my health ever again.  I don’t want to be naïve, only to get knocked down with bad news. 

I also don’t want to be neurotic (or for those who know me well, I should say more neurotic than usual).  I don’t want to google every symptom I have because every single symptom, big or small, can somehow lead to a very unnecessary cancer self-diagnosis.  A broken toe? Bone cancer, of course.  Pain in my abdomen? It’s got to be stomach cancer, or uterine cancer, or ovarian cancer, or probably all three.  A headache?  Obviously a brain tumor, most likely terminal.  A bladder infection? Bladder cancer, duh!  Feeling well? Maybe I have an incredibly rare illness that presents no symptoms at all.  I am doomed…or not.  But this way when I go to the doctor with a symptom, I will already know what might be coming.  I will not be fooled again.  I don’t want to worry that much.  I could literally worry myself sick.  I don’t want to be that person.

I suppose as time goes on I may be less likely to find myself worrying over symptoms, or worrying that I am worried, or worried that I am not worrying.  Does that make sense?  Oh goodness, I’m not making any sense.  I better google it.  This sounds bad…or not.

Looking on the Bright Side…this week and next week I have my follow up appointments with my general doctor, plastic surgeon, oncologist, and radiation oncologist.  Wish me luck.  Hopefully it will relieve some of the worrying.

 

Cancer Free

Cancer Free

I am finished with radiation and finished with treatments.  This day seemed so far away for so long.  I never let myself get too excited for it just in case it didn’t happen.  Cancer doesn’t follow a predictable schedule or pattern if it doesn’t want to and I wanted to protect myself from epic disappointment if things went askew.  Now it’s finally here!  I can finally consider myself a cancer survivor.  I am carefully optimistic that I will get my life back.  Cancer changed my life considerably for a while and it took so much away from me.  I had to just watch and let it happen.  I am ready to take my life back.  I slowly feel more and more like the Angie I was before.  I have to hope that every follow up visit with all my doctors will confirm that the cancer is gone.  It is still difficult to grasp that I may be in the clear or that I may find myself back to the place I so desperately fought to leave.  I am cautious not to let myself be too fearful or too confident.  For now though, I will celebrate what I know.  I know that treatments are done.  I know that I am considered “cancer free”.  I know that no matter what happens I have my family and friends to help get me through it.  I know to be thankful for all that I have. 

Looking on the Bright Side…I am cancer free and ready to celebrate it! 

Burn, Baby, Burn

Burn, Baby, Burn

I am finished with radiation but radiation is not quite finished with me.  Unfortunately, the effects of radiation continue past the last treatment.  My skin went from feeling like a really bad sunburn to feeling more and more like a scalding burn.  To be honest, it hurts, a lot.  It is painful.  I can barely stand to have anything touching it.  Bras?  No thanks, I have been going without.  Thanks to my super perky and nipple-less breasts it isn’t completely inappropriate to be in public braless.   However, it is inappropriate to be in public shirtless and since it hurts to have anything up against my skin, it is problematic.  I prefer to have nothing on for now.  I moisturize the burnt area like it’s my job.  My skin is peeling, but the new skin under it looks “really nice” according to the (truly wonderful) medical staff who burn skin for a living.  I have gotten so many weird compliments since all this started

·         I have a nicely shaped bald head, apparently

·         My hair regrowth comes in nice and even, apparently

·         I have amazing range of motion on my right arm since the node removal surgery and after very thorough measurements my right and left arms are nearly identical size (not swollen from lymphedema), apparently

·         I do a nice job of applying eyebrows symmetrically, except that one time

I mean it’s not every day that someone compliments how proportionately equal your arms are.  Other than the painfully burnt skin and limitations on being in public naked from the waist up I am doing well.  Soon, I will be out and about, without the risk of an indecent exposure arrest, enjoying life again. 

Looking on the Bright Side…being done with radiation means my skin can finally heal!  No more going back in to burn my already burnt boobie.  

 

Burnt and Crispy

Burnt and Crispy

Radiation continues and I’m tiring of the daily visits to the cancer center.  My skin went from pink and irritated to red and sensitive, to red, slightly blistery, brown, leathery, and sore.  Every visit brings a little bit more pain.  The area right below my under arm is the most burnt and sensitive.  It literally looks and feels like leather.  Even tan mom (remember her?) would be grossed out by it.  It all resembles a horrible sunburn, but instead of letting it heal, it’s as though I go right back to laying out in an intensely hot sun.  Every day I smother myself with lotion and now I add a layer of Aquafor on top of that.  My radiation oncologist continues to praise how well my skin is reacting considering I’m on my last week.  He said this is pretty typical and he’s happy to see that I do not yet have any peeling skin or open wounds.  He gave me a prescription strength burn cream to have on hand in case that changes.  I hope I won’t need it.

I try to keep my arm from rubbing against the burnt skin area and have taken to wearing my neck pillow around my waist to keep my arm at a safe distance from my crispy skin.  I know now the perfect gift to give someone who is diagnosed with breast cancer and has to go through surgery, chemo, and radiation.  A neck pillow and a sleep mask.  If you want to be really practical a gazillion boxes of tissues would also be useful. 

I have only two treatments left and as my kids would say “I’m almost done with cancer.”  I have been at the cancer center almost every day for the last six weeks and 1-2 times a week for five months prior to that.  When I wasn’t visiting that place I was stuck at home recovering from surgery.  After Friday, I don’t have another oncology appointment for a month.  A month, I say!

Looking on the Bright Side…It will feel weird, but I am happy not to have to see all the wonderful people who work at the hospital on a regular basis. 

Residual Effects

Residual Effects

Cancer has been a crazy whirlwind of an experience.  The list of side effects has been long and overwhelming.  Having been through 9 months of treatments and being almost finished there are still a few residual effects of having been through so much. 

1.     I have been to the doctor’s office/hospital/cancer center so many times that I now automatically assume all doctors and nurses are going to want to check my breasts.  I am worried that I will accidently give my dentist and optometrist quite an eyeful.  Surprise. 

2.    I feel the need to have a doctor’s note for anything I do.  When you are going through treatment for cancer, you would be surprised at how many people won’t touch you unless you have written permission from your doctor.  Now when I go somewhere I have my oncologist sign off on it: Angie (patient) is allowed to check out books from the library.  Just in case.

3.    I make routine trips to the pharmacy because there always seems to be something there for me.  It’s like a fun new surprise at every visit.  I just never know what’s waiting for me.  It is so exhilarating to open up that CVS bag and pull out the drug.  Is it something new?  Have I had it before?  What are the side effects?  How many pills do I get in a day?  Will I need refills?  Can I pronounce the name?  Do I take it with or without food?  The excitement just doesn’t end.  Another gift for me.  You shouldn’t have!  Those pharmacists really know how to make a girl feel special.   

4.    Every time I have to fill out a new health history form I consider it a challenge.  I try to fill it all out in under 10 minutes.  When I successfully complete this challenge and I return it to the receptionist with a smug look of accomplishment on my face and she reciprocates with an “I don’t care” or “why are you looking at me like that?” look back at me.  I don’t expect a trophy or anything, although it would be nice.

5.    I have learned just how quickly life can change.  One day you’re going about your regular day and the next you can find a lump that will turn your world upside down.  I have learned to be thankful for all the things I have. 

Looking on the Bright Side…This experience has also shown me what an amazing group of people I have in my life.  The support I have received has been incredible and I will be forever grateful for that.

I'm Almost Done!

I’m Almost Done! 

I have been going through the daily mundane radiation process.  My skin gets a little bit more red and irritated every day but it is “looking pretty good” according to my doctors.  I have to just take their word for it, I guess. 

I noticed last week I had a small rash on the center of my chest and figured it was related to the radiation.  Then the rash spread to my neck, and then to my face, and then to my shoulders.  I wake up on Monday morning with my right eye partially swollen close and a very obvious raised red rash from the chest up.  Just what I needed.  It looked as if I had wiped poison ivy on myself.  For the record, I had not.  I went in to see my radiation oncologist and he is unsure what it is, but says it is not related to the radiation.  He wants my medical oncologist to look at it though just to be sure.  He wasn’t in yet, so the nurse practitioner takes a peek.  She says it is not shingles or chicken pox.  Great, so we can rule out a few things.  It’s NOT poison ivy, radiation side effects, or shingles.  Now if only we could figure it out.  Unfortunately, we cannot.  They give me a steroid pack and it takes away most of the itchiness (ahhh) and reduces some of the redness and puffiness.  From far away, I look alright.  As you get closer, you see that my skin is still pretty irritated. 

I have to remind myself that I’m almost done.  Other than this crazy random rash, the sunburnt boob area, fatigue, and my fingernails*, things are going quite well.  I am beginning to feel like I’m getting some of myself back.

*Three of my fingernails are very sensitive and the fingernails have lifted off the nail bed, one is dangerously close to falling off.  This is a lingering side effect from chemo.  With the nail not bound to the nail bed it can be an issue if bacteria enters.  I have to be sure to have excellent hygiene to prevent an infection.  Lucky for me, excellent hygiene and hand washing are skills I happen to be pretty awesome at.  Nail polish also covers the discoloration nicely.

Looking on the Bright Side… I have 21 radiation treatments down and 7 to go!  On July 12^th I will be finished!!!

Strong - Weak - Repeat

Strong – Weak – Repeat

Going through chemo was one of the toughest things I have ever been through.  One of the hardest parts was feeling my body and health decline.  I was weaker than I had ever been.  I didn’t recognize myself and it was difficult to feel so sick and to know that I was not capable of doing things that I was so used to doing.  When chemo ended I slowly began to regain some strength.  I found myself able to do the simple things that had been too difficult to do just weeks before.  I began to go on short walks again.  Walking around the neighborhood felt amazing.  My walks started off at a slow pace and I only went a short distance.  Every day I would walk a little farther and move a little faster.  Soon enough, things seemed almost normal again.  I even started jogging, not well, but technically that is what I was doing.

I also began to ride my bike again.  My first few bike rides were a struggle.  I was very out of shape and the burning in my legs let me know it.  I began to bike the long way home from radiation forcing me a ride up a small but challenging hill.  The first time, I barely made it up.  Every day I would feel a little bit stronger and the hill would feel a little less daunting.  It felt so good to know that I was able to accomplish the things that I had selfishly taken for granted before cancer reminded me how quickly things can change. 

I continue to take walks and ride my bike but I find myself regressing.  My walks and bike rides have become shorter and slower.  I find myself getting out of breath a lot more quickly.  My heart beats faster and my naps get longer.  I hear myself telling the kids that I’m too tired to play.  I hate that!  I hate it so much!  It sucks to go backwards.  I am never sure how to react.  Should I push through and challenge my body or should I listen to my body and rest?  I'm ready for things to be normal again.

Looking on the Bright Side…although it is disheartening to feel weak and tired again, it is encouraging to know that my body can come back after surgeries and chemo and will again after radiation.

My Fashion Don't

My Fashion Don't

 

“Lymphedema occurs when the lymph system is damaged or blocked. Fluid builds up in soft body tissues and causes swelling. It is a common problem that may be caused by cancer and cancer treatment. Lymphedema can cause long-term physical, psychological, and social problems for patients.” www.cancer.gov

In November, I had 12 lymph nodes surgically removed to determine whether my cancer had spread to other parts of my body.  Because I no longer have those lymph nodes I am forever at risk of developing a potentially permanent swelling in my right arm.  I googled “lymphedema images” and that was a mistake.  Don’t make the same mistake.

I went to visit a lymphedema specialist after being referred to go in for an evaluation by my radiation oncologist and now the therapist wants to see me twice a week for the next four weeks.  That means that at the very minimum I will have at least 7 doctor’s appointments a week!  Really?  I’m trying to have a life here.  And she wants me to wear my compression sleeve during the day.  Ugh.  Picture me “enjoying” a lovely summer day with a beige colored sleeve wrapping my entire right arm and my scarf covering any exposing skin on my neck, chest, and shoulder.  It is not exactly the most ideal of summer outfits.  I worry that I will land myself on one of those Glamour DON’T pages with the black bar covering my eyes to save me from being humiliated, but I can recognize my own sweaty head anywhere.  I don’t want to dismiss the seriousness of lymphedema, but I just don’t know if I am willing to take it this far.  The cancer had spread and that’s why I am having the lymph node area radiated as well, currently putting me at an increased risk of lymphedema.  Cancer is so not glamorous!

Looking on the Bright Side…I suppose technically a compression sleeve is better looking than an extremely swollen arm, aka “lymphostatic elephantiasis.”  I know you want to google it.  You’ve been warned.





A major fashion DON'T

I look like a strange superhero wannabe with an injured arm and an unfortunate haircut!

Fatigue Not Welcome

Fatigue Not Welcome

Radiation itself is tiring.  Even though the cancer center is nearby and the treatments are so short (I’m done within 10 minutes now), it is exhausting having to go in every day.  So far it has been going very smoothly.  My skin is just starting to get a little itchy and red, but for the most part it is holding up well.  No major burns yet.  As I begin my fourth week, the fatigue is becoming more prominent.  I find myself needing a daily nap again.  By about 3:00 I can barely stand to be awake.  My brain starts to get fuzzy, my body feels slow, and I actually have to work to keep my eyes open.  I try to outlast the sensation, but eventually surrender and take the much needed nap.  I worry that pretty soon I will be  back to two naps a day.  I am told the fatigue gets worse until about 2 weeks  (or as long as six months!) after radiation is over.  I had been feeling so great and, like a true optimist, thought that maybe the fatigue wouldn’t affect me.  But instead I find myself unable to work up enough energy to do much of anything around mid-afternoon.  It feels similar to the time I had mono, but this time I have one overly tan boob and underarm to show for it. 

Looking on the Bright Side…today I completed my 15^th session, only 13 to go!

Showing Off

Showing Off

I had an odd moment last week.  I rode my bike to the cancer center as I have been doing on most days and I happened to arrive at the same time as an ambulance.  The ambulance was bringing in another cancer patient who was obviously too sick to get there himself.  I suddenly felt embarrassed.  I felt like a total show off. 

I want to disappear so that this elderly man and his panic stricken wife don’t see me casually biking to my appointment as if life were just hunky dory.  I want to apologize for my careless behavior.  I want to let them know that it hasn’t always been this easy for me.  I remember the days that I wasn’t sure if I could drive myself to chemo and was nervous that I wouldn’t have the energy to walk inside the building to the elevator.  I remember the nurses calling my name and knowing that standing up and making the very short walk to the chemo area would make me dizzy, unstable, and out of breath.  I remember these feelings all too well and I am pretty sure that if I saw another patient riding her bike to the cancer center I would have wanted to strangle her with the blanket I needed to keep my fragile body warm or throw the book that kept me entertained during my 4 hours of chemo right at her robust and annoying self.  Life isn’t fair.  I hate seeing other people struggle with being sick and although I am so grateful to finally be feeling well, I also feel guilty.  I feel foolish and insensitive for being healthy enough to ride my bike.  I quickly park my bicycle and try to sneak in without doing any more damage than I feel I have already done.

Looking on the Bright Side…it feels great to feel good again!

Radiation Rules

Radiation Rules

It is summer and I’m going through radiation with the instructions to stay inside from 10am-3pm whenever possible, stay in the shade, cover up (the lower half of my neck, right shoulder and chest area), stay out of the water, and apply lots of sunscreen.  Did I mention it’s summer?  Oh yeah, I did.  I also have two little kids who love to be outside ALL day long.  I have always been very good about protecting my skin with sunscreen, but the above guidelines have been challenging to abide by.  I half-jokingly made an earlier comment about buying dickie turtlenecks to ensure the appropriate coverage but I may have found a more “stylish” option.  I know, I know.  You’re wondering what’s more stylish than a dickie.  I didn’t think one existed either.  However, I have decided to use all the scarves that were previously used to cover my bald head to now cover my sensitive radiated skin.  So, I walk around wearing a scarf in the hot summer weather as if it’s the most normal thing in the world.  On occasion I will try to sneak out of the house without coverage (other than sunscreen) and Jeff will remind me that I do not want to do anything to jeopardize my timeline.  So I dramatically fling my scarf around my neck and head outdoors in the heat careful not to soak up the summer sun.

Looking on the Bright Side…Radiation treatments have been extremely uneventful, which is exactly how I like it to be.

 

 

Guilt and Jealousy

Guilt and Jealousy

Guilt is an emotion I have been dealing with since my diagnosis.  As soon as the doctor gave me the dreadful news I immediately felt guilty.  I hated that I would have to drag cancer into the lives of other people.  I was worried about imposing my health problems onto other people.  I felt guilty that I was responsible for bumming everyone out.

Jealousy is another emotion that has plagued me.  I was so sick of going places only to be surrounded by skinny young moms in their yoga pants and high pony tails.  I wondered how many of them had to hurry home from their child’s swim class or the park to go to their daily doctor’s appointment.  I was so jealous that their day seemed so normal.  I was jealous that they had eyelashes to put mascara on to.  I was jealous that they could go get their nails done without having to worry about a potentially life threatening infection attacking their compromised immune system.  I was jealous of their perfectly maintained eyebrows.  I was jealous that their kids would go home and play UNO while my kids would play doctor and chemotherapy.  I was jealous that their children would pick out the perfect bedtime story while mine would want to read Mom Has Cancer for the 900^th time.  I was jealous that their husbands would get to come home from work and have quality family time while my husband had to come home to me lying on the couch still in my pajamas and too sick to do anything.  I was jealous that their lives were perfect and mine was falling apart.  Now, I know that nobody’s life is perfect, but for that brief moment and from the outside looking in, their lives looked flawless.  I would watch them with jealousy until they grabbed their impeccably dressed children and designer bags and drove away in their fancy SUV’s.  I was jealous that they could go out and leave their problems behind closed doors and I had to wear mine out with me all the time.  I was jealous that no one would look at me and feel jealous.  I felt guilty for feeling so jealous.

Looking on the Bright Side…I have my eyebrows and eyelashes back!  They still have a little ways to grow, but they are back.  Jealous?  I didn’t think so.

Check out the hair growth (mine, not Jeff's)!

Flashbacks

Flashbacks

I was at the store the other day and had a sudden flashback moment.  Having never been a soldier at war, I feel completely unqualified to compare my cancer experience to war...so I won’t. 

I am browsing through the store and go check out the bras (sidenote – bras are so easy and fun to shop for now) when I pass by the robes.  The sensation hits me hard, I seriously find myself feeling dizzy and scared.  My body is in present time, but my brain in 7-8 months behind back to my diagnosis.  I very vividly remember being at this same store looking for robes in preparation for my bilateral mastectomy surgery knowing that I need to find clothing that I can easily get on and off using only my T-rex mobile arms.  I feel that same sense of shock that overwhelmed my every day in the beginning.  I literally have to remind myself that it is not happening all over again and I’m passed that time.  I may never want to buy a robe again.  I try to quickly pass the robe section until something catches my eye.  Oh cute, look at that robe! 

Damn you cute robes.  Can’t you see this is painful for me?  But no, I remain strong.  I have full range of motion now and I can buy any top that I want.  I no longer need to limit myself to open front, easy close garments.  I will not even consider it.  Unless it’s on sale!

Looking on the Bright Side…It is so nice to be able to wear any kind of bra I want.  IMHO, my new breasts look and feel good in all colors, styles, and support options.

 

"My Mommy Has Cancer" - says Barbie

"My Mommy Has Cancer" - says Barbie

I have been very honest with my kids about cancer from the very beginning.  They have asked numerous questions and I have tried to do my best to answer them all.  There was one question and subject that hadn’t come up yet and I hoped it wouldn’t, but it did.  I figured it would at some point.  I’m not sure how or when they figured it out and I probably didn’t give them enough credit in hoping they wouldn’t put two and two together.  They began to ask about death.  They began to associate cancer with death.  It was the one thing I had hoped to avoid.  They asked me what it meant to be a “survivor”, and what happens if the cancer comes back, and if I could die from cancer.  Now my heart feels heavy in my chest and I have to remind myself to breathe.  It is as if my body and brain are frozen.  I want desperately to go back in time, to a time before cancer interrupted our wonderfully healthy and simple lives, to a time when they never would have had to ask me this.   I gave them the best answer I could.  My attempts to be truthful in a way that wouldn’t frighten them proved to be effective, for now.  They both seemed content with my answer but I could tell by their seriousness that they understood.  Despite my telling them they don’t have to worry about it, I knew that it would be inevitable to some degree. 

I didn’t get a true sense of their understanding until the next day when Brinley was playing Barbies and I heard her say “my mom died, she had cancer” and another say “yeah my mom has cancer too, she lost all her hair.”  Brinley continues to play like this and her Polly Pockets, Lego Friends, Little Pet Shops, etc., all seem to have at least one mother who died from cancer.  It breaks my heart to hear, but I know that this is her way of processing the concept of death and cancer.  Coen brings it up occasionally too.  He went from saying things like “I hope you get rid of cancer forever” to “I hope you don’t die from cancer.”  Jeff can’t stand to hear the kids say things like that and wants to stop them, but I think it is okay for them to play out the scenario and talk about it in their own way.  I don’t want to make them feel like they are doing something wrong.  I want them to be comfortable dealing with it in a way that makes sense to them.  My hope is that Brinley will eventually be overheard playing with her toys and having one Barbie (or whatever) saying to another “yeah my mom used to have cancer.  She is a cancer survivor and she kicked cancers ass!”  Maybe not in those exact words but you get the point.

Looking on the Bright Side…the Lego Friends have removable hair so if you ever want to truly play cancer or chemo as my kids did while I was going through hair loss, they are the way to go! 

Bald Barbie - not sold in stores...yet

 

 

Charlize-ing It

Wednesday, June 5th

I went out with friends the other day to celebrate the beginning of summer.  I decided (kind of last minute) that I didn’t want to wear my head scarf.  I just wanted to have fun with my friends and I wanted to leave cancer behind.  I wanted to have a day out when no one looked at me as a cancer patient.  Instead of people looking at me like “oh my, she has cancer” they looked at me like “oh my, what did she do to her hair?”  I didn’t mind though.  I pretended to be confident in my decision and Charlize Theron-ed it for the day.

At least that is what I wanted to look like!

I got a ton of compliments about my hair from all my friends and I think they were all sincere.  I love my friends!  I definitely got some looks from strangers but I am used to that now.  I’m not sure if they saw me as a cancer patient whose hair is growing back, or as a very brave woman trying out a very tricky hairstyle, or who knows what. 

At one point I am sitting with my friend K at the bar when an extremely handsome 25 year old (okay, he was really a decent looking fifty year old) comes over to me and tells me that I’m beautiful, he loves my hair, and I look just like Charlize Theron (okay, he actually just told me that he really likes my hair and he mentions that he has been trying to convince his wife to cut her hair like mine, but she won’t do it.)  How sweet is that?  I totally wasn’t expecting it.  I have gone for so long without any hair that it never occurred to me a stranger who doesn’t know my situation would complement me.  I thanked him and didn’t mention that the only reason I am sporting this look is because I lost all my hair to cancer.  It turns out there are men who like short hair.  Lucky for me, my husband is one of them! 

Looking on the Bright Side…Coen saw the picture of Charlize Theron and told me “she looks just like you mommy!”  How precious is that?  Then he said that she looks like a boy. 

Hardcore Tattoo Humor

Radiate Me

Radiate Me – Tuesday, June 4^th

So there I lay, in a big room with a lone table.  My left boob and arm taped to the table and my right arm awkwardly and painfully placed above my head.  My right breast exposed and ready to be radiated.  I lay as still as I possibly can and try not to think about how much this hurts my shoulder.  For my first treatment I am a little nervous.  I’m not entirely sure what to expect.  They get me all lined up using the tattoos as a marker for accuracy.  They push and pull and tug and roll me until I am in the absolute exact spot I need to be in.  They place a bolus (a sticky flat piece of rubber-like material used to increase the radiation dose to the skin and tissue) on my chest.  It’s time.  It’s time for the radiation.  The technicians have carefully lined me up to the machine and leave the treatment room.  I suddenly panic that I am not sure how it is going to feel.  They told me I will hear a noise but they didn’t tell me if it’s going to hurt.  I remember that I have to keep a steady breath and am supposed to not panic.  Oh no, now I am panicked that I’m panicking.  I see the green laser light beams (that have been there the whole time, but are only now making me nervous) and then begin to hear and see the large machine move over me.  In my panic, I fear that there will be an actual visible laser radiation beam that will zap me.  I tell myself this is radiation, not a large Taser gun or electroshock machine.  Right?  I feel very anxious and am upset that I never asked specifically about this.  How could I not have asked them if this is going to feel like I’m being tasered.  I hear the noise and close my eyes expecting a lightning bolt to erupt from the machine and strike me, while I lay perfectly still.  Ha!

I open my eyes and watch as the machine moves over to the other side of my body.  What’s happening?  Is something wrong?  Maybe the machine is broken, maybe I can quickly convince them that I don’t need radiation and would like to opt out of this torture chamber while I am still alive.  Oh God!  Here it goes again.  Another noise!  Then the technicians come over and tell me I’m doing a good job and rearrange my bolus to another section of my chest.  They comment that I am almost done.  Huh.  You mean I was already radiated.  That wasn’t so bad.  They finish the next two treatment fields and release me.   Hmm, that’s it.  I knew it wasn’t going to be too bad.  Just as I expected.

Looking on the Bright Side…I have radiation every day Monday – Friday for six weeks, but it is so close to my house that I have been riding my bike there.  It is my minimal daily exercise.

Radiation Verification

Radiation Verification – Monday, June 3^rd

I begin the week with my verification visit.  This appointment was like a dry run of radiation.  They told me it would be the most difficult of all because I would need to hold my position for about 30-35 minutes.  Let me tell you about my “position”.  I have to lie on my back with my right arm over my head.  That sounds pretty easy, right?  That’s what I thought too.  It gets a bit more complicated.  I had a special mold made that is specific to my body and the necessary position.  I lay there with my right breast exposed and they tape my left breast and arm down to the table.  My doctor does not appreciate my cleavage (so unfortunate!) so it gets taped down as much as possible in order to get the angle needed to radiate my right breast area.  My right arm needs to be lifted so that they can radiate under my arm where the lymph nodes were.  Fortunately, I have a pretty decent range of motion since my surgery.  Unfortunately, my arm needs to be in a very odd and extremely uncomfortable position and it hurts.  I mean it really hurts!  They somehow contort my arm and shoulder in a very unnatural way and then say “perfect, just like that.”  Now I have to keep that position for 30 minutes.  Are you kidding me?  Really?  I have to keep this position exactly!  That means no moving at all.  I can’t move my fingers, I can’t scratch that itch that always appears at the exact time I can’t do anything about it, I can’t even take a deep breath.  I must stay completely still.  I am supposed to relax and not tense up and I need to keep my breathing as regulated as possible.  

I want to tell them that my shoulder may have actually dislocated and I let them know that it is not comfortable.  In this case, comfort doesn’t really matter.  I ask 20 minutes in if there is any way I can move my arm, real quick.  They say “no, not really” and “if we let you move your arm, we have to start over.”  I keep it there.  It took everything in my power not to move my arm.  Everything!  It is challenging to stay completely still for 30 minutes in any position, but nearly impossible to do it in a “Cirque de Soleil performer” position.  I finally finish and can put my arm back down.  I shed a quick tear in both agony and rejoice that it is over.  For a couple of minutes I get to put my arm down.  I am pretty sure it is at least 200 tons, but I can’t be sure of the exact weight.  After two glorious minutes, I have to return my arm to that same exact awful and painful position so that they can tattoo me.  I get 5 of the most boring tattoos you can possibly imagine.  These tiny tattoo dots are placed on my skin to ensure the accuracy of radiation.  The nurses also draw solid and dotted lines all over me with a red, purple, blue, and black marker.  They add to the 3 large X’s that were drawn on last week.  My chest suddenly looks like a treasure map.  It is as if a very drunk pirate drew a weird and confusing diagram of his hidden treasure on my neck, boob, and underarm.  They send me home.  I will go back tomorrow for my first treatment.  They tell me it should be easier and my shoulder will only need to be displaced for 10-15 minutes instead of 30.  If I could clap, I would.

Looking on the Bright Side…If I can decipher the directions I may find the hidden treasure, I hope it is a shoulder brace.

 

Radiation Waiting Room

Radiation Waiting Room – Tuesday, May 28^th

I went to visit the radiation oncologist today for my first real appointment.  I got to the hospital and sat down at one of the chairs in the very large and unusually empty waiting area.  I was feeling a bit nervous and not in a friendly chatty kind of mood.  I took a deep breath as I still do when waiting to see the doctor, determined to keep to myself busy looking even though no one was there.  I took out my phone and began to play a game to pass the time.  Along comes an older gentleman who apparently looks around at the huge vacant room and the 15 or so empty chairs and decides to sit where?  Yep, right by me.  I look up from my phone to acknowledge him and gave a friendly smile and went back to my phone.  I knew he wanted to talk to me and could feel him waiting for the ideal time to start a conversation.  He apparently thought he found it.

He began the conversation asking me where I got my head scarf.  He was an Indian man with a very thick accent and I was having a difficult time understanding him, but that didn’t stop him from talking.  I put my phone down figuring Wheel of Fortune was going to have to wait.  He was there waiting for his wife, who has uterine cancer.  Our conversation came to a halt only when his frail looking wife in a wheelchair was finished with her appointment and wheeled back out to him.  He was a very kind man and although his wife spoke even less English than he did, I felt a connection with her.  Here we are, two women with so many differences, and yet we had cancer in common.  I began to wonder what her prognosis was and felt bad for her knowing she was going through this scary situation in a country she may/may not be familiar with and unable to fully communicate to the doctors and nurses.  She looked old and tired.  I wondered how her journey was going and how it would end.  As they began to get ready to leave I wished them luck and the man looked at me and said in his broken English - cancer shouldn’t happen to someone my age and that cancer can happen to old people like him, but not a young mother like me.  I was feeling bad for her because she was old and he was feeling bad for me because I was young.  For some reason, this left me very emotional.  He said something to her in their native language and without ever taking her eyes off of me she nodded to me.  I sensed that the nod was meant to say “I wish you well and I hope your ongoing treatments go smoothly” although it may have been to say “I know my husband is a talker, sorry if he was bothering you and interrupting your ability to solve the puzzle.”  I smiled and nodded back to say “I also wish you well” or “yes, your husband is a talker, but it’s okay and I’m ready to buy that vowel.”

Looking on the Bright Side…with all the time I have spent in waiting rooms, I have had the opportunity to practice my Wheel of Fortune and 4 pics 1 word skills.