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.

My Advice #7 & #8

More Advice (cont.)

#7: Your real friends will shave their heads to show support – I had two people in my life who shaved their head after I lost my hair to cancer.  My husband shaved his head, but he’s bald and has shaved his head for as long as I’ve known him.  My friend Lisa also shaved her head, but she has breast cancer too.  You know what?  Never mind.  Disregard this advice.

#7 Redo: Get used to being confused/chemo brain – Let it be known that your brain will not function properly for a while (I’m hoping it’s temporary.)  It will be most noticeable when you are out with people and you’re trying to talk and do things.  I’m not talking about anything difficult either.  I’m talking about real simple things like putting your shoes on the correct feet, remembering what year it is, opening a door “correctly” (push? pull? slide? automatic? You never even realized there were so many types of doors.  I have stood in front of a door for much longer than I should have before realizing it was not an automatic door), etc.

#8: Don’t worry about taking my advice – everyone handles cancer differently.  Whether you choose to keep your diagnosis, feelings, and experience private or put it all out there for anyone with an internet connection to access, you have to do what’s right for you.  My experience with surgeries, chemo, radiation, and doctor’s might be completely different than yours even with the exact same diagnosis.  So that’s my last piece of advice…you don’t have to listen to me if it’s not right for you.  Good luck!

Looking on the Bright Side…I should also include on my list to try and look on the bright side.  There will be many dark days ahead but try to find something to smile about.