Beyondpinkonline.com Alice’s Blog

 

 

 

So! You must know that one of the side effects of chemo is the hair situation. Well, as you know, I went through chemo and yes, I lost all of my hair. And, I mean all of it! But, we’ll talk about the obvious right now. I guess I could just mention the other places briefly here…and take this to mean wherever your thoughts might lead you…bald in places that I had not seen bald in many, many, many years. You’re not surprised?? Then let me tell you about what I’m dealing with now.

 

Oh, but first I have to back up. You’ll need a little of the historical saga.

 

Before I went through treatment, my hair was wavy, maybe some would say curly. It was not the “I never have to do a thing to it” look. The natural wave was just enough to give me that unruly look. Besides that, it was so slow growing that I could never attain a beautifully long hair coiffeur which of course I desired because I didn’t have it. You know, that’s not exactly true because my impatient side always stepped in.

 

My hair was doomed. I was doomed. Doom was the word because as soon as my hair started to show signs of any decent length, I would be at my limits of waiting for long, you know, LONG hair. You guessed it. Here come the scissors…short again. Back to the “growing out phase!” This went on for much of my 38 years…well for at least 30 of the 38 years. My mom took care of my hair before that…it was her problem then.

As if this hair of mine wasn’t enough of a problem…I now had to go through chemo! Well! You must have heard what they say chemo does to your hair, haven’t you? YOU LOSE IT!!! Believe me, they are telling the truth! Don’t have to worry about growing your hair out…or…whether it’s long or short…or whether it’s thick or thin…or…whether it’s curly, straight, or wavy…there is no hair to think about!

 

Anyway, since chemo was going to take it’s hit, I decided to shave my head. A decision I made mainly because I couldn’t stand the thought of my hair falling out in clumps. Who the heck wants to be brushing their hair and it ends up in their hand? Well, I know that you’re supposed to lose ungodly amounts of strands of hair daily due to whatever. And, I always found strands of hairs strewn about on the bathroom floor and wondered if I was going bald from trying to grow my hair and cutting it so many times. But, clumps of hair in your hand??!! No thanks!

 

And so, the day before chemo started I shaved my head bald! No…I didn’t shave it myself. I had called my hairdresser and she agreed to shave my head. Yep! I looked like “GI Jane” shaved down…as if they forgot to put the wig on her head. Even “Ken” has hair for Pete’s Sake! As chemo progressed, I went from a few millimeters of hair to a shininess on my head that I never knew could exist. Well…you’ve seen some of those bald men walking around town, haven’t you? Did you ever wonder how their scalp got so shiny? Do you think they polish their heads? You can actually see reflections on the top of their heads! No, don’t laugh…I’m serious! Take a closer look the next time you get near a bald guy…not too close…he’ll think your making a pass at him or even worse that you’re some kind of weirdo! You will see what I’m talking about. Anyway, that’s what my head looked like. Amazing!

 

At any rate, beginning with the time of shaving my head, and with my last chemo treatment being in August of ’06, I really didn’t have any hair to speak of until March of 2007…count them…about10 months of shiny head!  So, after almost a year of hairlessness…ah…baldness…and yes…shininess, I decided that this was the time that I was really going to do it. You don’t know what I was ready to do? Come on now…we’re talking hair here. I was going to make growing my hair and have long luxurious locks a mission of my lifetime forward. Humph! Interpret that as “I really, really mean it too!”

 

To continue with my historical tale, as my hair started to grow, I noticed that it grew in “tiger striped.” Every strand of hair told the story of my rounds of chemo. It reminded me of what they say of a tree that tells it’s age by the number of growth rings within the trunk. The strands showed alternating black and pure white stripes. Thus, I assume that the chemo stripped my hair of any color during treatments and then in-between treatments the hairs grew in with color. Incredible! Do you ever wonder how animals get their different colors? How about their many stripes? Hey, what about a skunk…stripe right down the back! What in the world were they subjugated to!  Not only did the striping astound me, my hair was softer that any baby hair I had ever felt.

 

After a couple of months of this hair - if you want to call it “hair” - I decided I didn’t want the salt and pepper baby “down” on my head, so a hair cut might be in order for a fresh start. Already my lifetime mission is on a temporary delay!

 

HAIRCUT NUMBER ONE!

Get rid of the striped baby stuff. This took my hair length back to a teensy bit longer that my GI Jane cut …if you can call “BALD” a cut.

Here we go again, waiting for hair growth. But after a few more long, lonnnnggg months, I noticed that the texture of my hair had changed completely. Yes, the texture was in fact different from my usual soft, listless, wavy hair of the past. Also the baby down was gone. My hair was growing in thick and curly….really curly. Notice I said “thick and curly.” Huh…Wow! What’s this? I used to dream of hair like this! Imagine if it stayed thick and curly and kept growing at a decent pace that outgrew my impatience! That would be awesome! I could deal with this…something new and different. What am I saying…new and different? It would be my new lifetime mission accomplished. A dream come true. If life was so simple. Just to have hair that I could work with and wear with pride and watch people envy the color, the curls, the thickness, the lushness. Oh to imagine such tresses. The agonizing waiting for hair growth would be over for me.  I could handle this!

 

As my hair grew…did you hear me…it grew! Doesn’t that have a lovely sound to it? It grew! Anyway, the back GREW in a lot faster that the front and sides. And, as we all do when we are “growing” our hair out… I didn’t want to get it cut, trimmed, or touched because…“I was GROWING it out!”

 

Then the inevitable happened.  It just seemed to appear one day. I should have known but I was blinded by my long-awaited lifetime dream…long, beautiful, sensational hair! The realization of the happening set in. I looked in the mirror and plainly saw it. The definite growth of a not so popular hair style. Yes, the foreseeable style called the “mullet” appeared on my head!

 

Now, we all know that the mullet is not an “in” style. Is it even a style? Is that even a word? Is it in the hair dictionary? What does it mean??? Isn’t it just a word to describe what happens when the back of your hair grows faster than the front and sides of your hair? Even the word “mullet” isn’t pretty!  Do you really call that STYLE?? Anyway, determined to keep the growing going and to disguise the unsightly mullet, I used hair gels, mousse, and hair spray. I worked to try to pin that hair back, clip it up, tease it high…but, alas the mullet reared its ugly head every time I looked at my reflection. Say!! If I thought it looked bad, what do you suppose my co-workers were saying about my hair? And, how about my students? I must have looked like an oddity in their eyes! Think about it. First I come into class bald. Okay, sometimes I wore those little cutesy little caps with the glitter and bows. And now…now, I’m sporting the dreaded mullet style. Besides all of this…I’m working to hide this so called style instead of getting a real cut at the hairstylist! That’s it! I couldn’t take it anymore. I was done talking to myself!

 

Enough is enough. The lifetime mission is about to go on another temporary hold! I had to get real and face facts! I need a haircut. I need to get some kind of style on my head! Let’s deal with this in little steps. How about if I just think of it as having “growing in” styles? That way, my mind will still be thinking that my hair is “growing out” and the mirror will say that I at least have an acceptable hairstyle. I liked that idea. I could move on with a “work-in-progress” view of my mission.

 

HAIRCUT NUMBER TWO!

Chop the back off and leave the front and sides intact.

This worked for a while. I was able to manage with the help of product aids, but then I noticed something happening. That something took different forms in my mind. There was another monkey wrench thrown into the works…or…here comes another iron in the fire…or…here’s another axe to grind. Yes, I like the axe idea. Maybe I can grind it down to nothing. I think I’ll try that! Oh well, just one more problem to take care of. You know, there’s nothing like hair to occupy your mind, body and soul!

 

Let me describe the problem to you. The top and the sides were now bushing out. “What? Am I a clown?” I look back at myself and say, “Do you feel like a clown? Maybe you like this temporary look?” And I say back to the mirror, “OK, you asked for it!” so I just used some of those bobby pin things to hold the hair back into place and then sprayed the daylights out of it! This reminded me of my high school days…I was an eighties girl. The ladies and girls in my family came from the town of the “BIG HAIR!” Yep, tease it, pin it, and spray it high. The bigger the hair the better the look! And that look took a lot of bobby pins. I fell back on my expertise of the past. Those little pins are very inexpensive and do the job quite well.

At one particular point…I guess he couldn’t phantom the concept of a top-heavy head, my husband felt compelled to express his opinion. “Honey you have 24 bobby pins in your hair, you could really be at risk for setting off the metal detectors at the airport or the county building!

 

 A reality check for me. Oh, I guess that’s why I’ve been having these heavy headed headaches! There should be a rule limiting the number of bobby pins you can use before you really need to address the hairstyle factor.

 

Not about to give up on the present growth, I thought, I’ll go with hair clips “Have you ever used hair clips in your hair when you went out in public and not been self-conscious about them? Or, have you ever seen anyone with clips in their hair who actually looked good?”

You know you haven’t.

At the checkout line talking to the lady in front of you, “Gosh, such lovely hairclips!

Give me a break! “OK forget the look good or look nice…has anyone ever used hairclips in their hair and didn’t have it look like you were getting ready for a cut at the hairdressers?”

Hey, let’s try the headband…”looks like I’m about to give myself a facial.” Let’s face it…hairclips, mousse, gel, bobby pins, headbands…not the solution. Actually, they’re adding to my problem…and delaying my lifetime mission of Rapunzel hair!

 

HAIRCUT NUMBER THREE!

Away with the bushiness on the top and sides of my hair… aaaahhhhh now that’s nice. But wait a minute! You need some imput as to how this look transpired! I was trudging along…well not really trudging…but living life. And the hair was behaving itself. It was looking good, manageable, and not so hard to handle…I can live with this. So it went well for a few months and I was enjoying the relief of not obsessing about hair. It was the lap of luxury as far as good hair days go! And then, there it goes. And I mean it went! The bush of hair reared up and roared!

 

Again, I looked in the mirror…I looked frumpy…frumpy?…FRUMPY! I can’t stand it. I’ve had it…again! The hair is all over the place. It’s on the back of my neck. It’s bushed out the sides. The top is too long. It’s all over the place. It’s taken a life of its own! It was Saturday morning. What am I going to do? I’m destined to give in to the continual hair cuts…short hair. Look at me! I’ve got a big frumpy Afro sitting on my head. As I remember, the Afro hasn’t been the style since the 70’s. Wait! Maybe I could start a new retro trend. What do you think? No, that would be one against…how many people in this world??

I think I might have to grind this axe. Call my hair dresser. Ahhh, no answer…Saturday…she doesn’t work on Saturday. You know what? I can’t wait for next week! Mmmm…how hard can it be to cut curly hair? I mean you can’t mess up curly hair, can you?? But, I can’t see the back of my head. But…my neighbor can.

 

“Jen, can you cut my hair?”

“What? Are you Crazy?”

“No, Come on, you can’t mess up curly hair…just do it.

I went over to Jen’s and she cut three inches off the back. I was ecstatic. See that. What’s so hard about cutting hair? Nothing to it but to do it! My new motto! But, I was happy…until I got home.

 

At home, I checked the cut out in the…you guessed it! The mirror! The reflection glass! The imagery of perfection! The very first, last, and many in-between times in the day of things to do! That function, of course, takes precedence over many other necessary duties of the day. Oh dear! Why oh why are “WE” so vain??

 

“I need more lift on top. I think I’ll just cut some more off the top.” Ah, that looks good.

“Alright, now the sides don’t match the top. Let me see. I’ll just snip a little here and…oh… another little snip there. Definitely, it’s looking really fine! But, now I’m thinking the back is just a tiny bit too long. What I really should do is leave the front long and shave the back up. That would help to give some lift on my crown. Listen to me, I sound like a pro!

Well, I did watch my aunt cut hair over the years. She’s a hairdresser and I learned a lot by the wait and watch and see method. Do they hand out certifications for that learning method? You want to know, do you? Why didn’t you just call your aunt? She can’t use that “doesn’t work on Saturday” routine on you…she’s family! Well, she lives three hours away or I would have used that ace card!

 

Moving on with this number three haircut, I needed clippers to shave up the back of my neck.  Hmmmmm, I do have dog clippers. That’s where having the equipment to trim the dog’s hair comes in handy for double duty on Mom’s hair. Just a little tip for those of you who want to be “in the know!” So I cleaned them with alcohol and forged ahead with my do-it-yourself hairstyling plans. Remember, you can’t mess up curly hair. Bzzzzz….bzzzzz….bzzzzzz….Hesitantly, I looked into the looking glass. “Hey I don’t look to bad. I did a pretty good job. I’d say I look pretty doggone good!”

 

“Oh yeah.. I did it…oh yeah… I got this. I don’t need no hairdresser! You only need a little courage…you know…guts! I put a little gel in the hair and went out to celebrate my success!

 

HAIRCUT NUMBER 4!

Putting Larry, Curly, and Mo back together again.

I woke up the next morning and looked in the mirror. Yes, it’s the first thing I do every morning…check out the strands. Don’t you? Doesn’t everybody? Goodness gracious! Isn’t that why we have those mirrors all over the place? The immediate thought of the day is usually “What do I look like” and “What’s it going to take to correct it?” So, what I saw was a combination of the Three Stooges. There were parts sticking out like “Larry, bald scalp showing like “Curly,” and surprisingly enough flat spots like “Mo.”

 

Well now! I certainly can’t go to my hairdresser. I’ve been with her for 15 years. I’d have to beg for help. And besides, I’d most definitely be in “trouble” with her. So, I did the next best thing…I went to the mall. You know, there are a lot of walk-in salons. Did you ever count them? Each one touting excellent results and very, very inexpensive fees! Pushing trepidation to the side, I walked into one of them…don’t ask which one…and put my dilemma in the hands of a perfect stranger of a hairstylist!

 

Using some sort of distorted logic, I reasoned that after they fixed my fiasco, I could let it grow and eventually be able to go back to my wonderful 15 years of rapport and understanding hairstylist and she would be none the wiser!

 

Here’s how my luck on the hair saga has been going as you can well see from my ongoing yarn. The stylist I chanced on was a girl who just graduated from beauty school. Believe it or not!  She thought I did a good job…warning, warning. So, she thought I did a good job! Great! And she’s going to fix my problem cut! Okay, stay calm…just let her straighten the edges! That’s what she did and then I went home and put the dog shears back in the dog supply gear. I think I’ll leave them there!

 

I am now using hairclips, bobby pins, gels, mousse, hairspray…anything to keep the hair from afro ing! I’m avoiding any contact with my hairdresser for 6 months. But, I will be waiting for an appointment on her schedule and will leave the scissors in the sewing drawer!

 

 I don’t know if I’ll ever reach my lifetime mission of long hair…but I will have plenty of time to work on it!

Do you see what that darn chemo did to my hair?J

 

So! Can we talk…we all know that I had a bilateral mastectomy….and…we all know that I had silicone implants. Simple, known facts.  But, what you don’t know, and I would think that this is a common problem among US, is that it’s almost impossible to find a comfortable bra! Yes, it may sound trivial but, believe me, it’s major! The tightness around the midriff, the stays always pinching, the seams are even bothersome. I’ve long been searching for a solution to this seemingly “frivolous” discomfort.

 

Before my surgery I purchased every fancy push up…pull up…zip up…clip front…water loaded…foam cup…. underwire device ever know to man.  Or…I SHOULD say woman!  I used to love all the different ways you could try to enhance, cover-up, or lift up whatever you had or didn’t have as an “endowment” on the topside.

 

But now, I don’t even really need to wear a bra, because what I have really is not going to succumb to age or gravity. They are fixated in that same youthful, eternal position of uplift and fullness.  In short, my bosoms are positioned and will remain so for a very, very long time…actually, the envy of even any 20 year old woman!  Plus, the best part is that this look will last a lifetime.

 

Well then you say, “Just what is she complaining about?” No more shopping endlessly for the “perfect” look in a bra…that money could now buy some other frivolous pretty like lace panties and such! But, nonetheless, there ARE times when wearing a bra is more than for tissue support.  Sometimes…it’s just a stretch from puberty. Remember when you had to stuff the bra cups for just the right jut? Remember when you just couldn’t wait for the next size cup to be needed? Well those memories also bring back feelings of femininity. It’s the feeling of being a lady…the feminine touch of lace and silk. Also, there’s the practical side. Mom always said, “Make sure you have clean, non-holy underwear on because what would people think of you if you’re in an accident?” That thought sometimes runs in my head and I think, “If I’m in an accident and not wearing any bra, what would people say?” I never did know who these people were or why they’d be undressing me but…there it is!  Two schools of thought here…wear the frilly intimates that bother every part of my skin now…or…take a chance of “people” talking about me per chance of an accident.

 

Moving on, I know there are sports bras. But a sports bra is just that…a sports bra. It’s intended to smash the boobs, hold everything together so that there is no jiggle, and just about come up to your neck! You can’t ever wear anything with a plunging neckline or even a modest neckline. Those bras fit the bodice higher than any shirt…like I said…just about up to the neck.

 

 OK, where am I going with this ranting? Let’s get to the meat of this subject….what do I really need in a bra? I’ll  make a list.

 

Basically, my bra should have:

1.      Two pieces of triangle shaped material to accommodate my implants.

2.      A strap on each side to hold things up.

3.      Must fit loose… I can’t stand anything snug anymore.

 

There, you have it. Three basic requirements shouldn’t be too hard to fulfill. I went shopping with a mental list of these criteria.

Here we go again! I’m in the lingerie department…and you know…all lingerie departments are the same. There are way, way, way too many options to make any sort of intelligent or quick decision!

 

The confusion starts. Ok, bras…let’s see…hhmmm…under wire…nope…padded…nope

Ok here’s one…size 32? Yeah right! That will never go around me. And what about cup sizes? This is going to be much harder than I thought.

 

It’s getting perplexing…B cup…C cup…these aren’t working… I am no longer a cup nor do I fill a cup the same way that I would have spilled into a cup before surgery. In the fitting room, the bra cups sort of just lay on my chest. My implants are not filling the cups as the bra manufacturer anticipated. Gosh! There has to be some bra distributor attuned to the many breast implanted women in this world! Where are they and what are they waiting for…I am looking for them!

 

Do you know that you can spend an entire afternoon just in the intimates department and still not have anything in hand to solidify a sale!

 

To continue on my quest. Now here’s one…material…check…size…check. I must try this one on. Well, this 38 is snug.  I’d like it to be a little looser. Let me see if they have a 40. Have you ever picked up a size 40 bra? A size 40 bra…this is a whole new world of bras. It is like going from a 27 inch TV to a 52 inch big screen in one fell swoop. The material is wider, the cups are larger, the straps are even thicker! If I move into a size 40 bra I will have crossed the threshold from small world to big world. Now, don’t get me wrong, and I don’t mean to offend anyone, but there is definitely a distinction between big and small. And, if you are one of those women patronizing the larger sizes, there is a need in intimates for ALL sizes. Nevertheless, for me, big and way, way too, too big. And, I have come to the realization that my criteria for selecting the perfect bra will never be met in the size forty ranges.  I guessed that I’d have to settle for the 38 bodice and 38 whatever cup size and deal with the snug, uncomfortable fit.

 

But wait. Here comes the most extraordinary story ending and the marvelous solution to this so-called supposedly inconsequential problem!

I, as one of the “implanted” people, was on one of my endless hunts for the faultless bra. And, as you know, it had to be womanly and yet comfortable. I was surrounded by so many brands and so many styles again. Just then a salesclerk come up to me and proceeded to offer her assistance. I thought about it and decided, “Well why not divulge my dilemma!” Nothing to lose and nothing to gain…or…everything to gain, at least maybe something with a little more comfort than I’ve had these days in wearing a bra. I bared my soul…well…anyway the minor burden I’ve had to deal with as to the discomfort and tightness of the sizing that came with wearing a size 38 bra. I also explained the reasons for not moving up to the size 40 world. I told the WHOLE story!

To my delight, she casually offered her solution! “Have you tried bra extenders?” She asked.  What! Bra extenders…what are they? Where are they? Let me see them! There they were in packs of three…white, black, and beige. They are little strips of material with hooks on them to attach to the back of your bra so that the bra is looser around the bodice. Lo and Behold!!! A miracle! Welllll….not a miracle but pretty darn close! I bought two packs, not wanting to chance not finding these little savers. You may not think that they make a difference but, believe me, that minor change is unbelievable! Comfort is back in my life! Lace and frills are back on my bodice! I can go without, I can wear the sports thing up to my neck, or…I can wear the extenders on any pretty bra and feel like the lady, the woman that I am!

I had an opportunity to meet Donna a few weeks ago….however, I had been talking to her for months!

She just finished her treatment for breast cancer and we celebrated by finally talking face to face. I am so proud of Donna and encouraged her to share her story. You see…sometimes what seems ordinary to some…is extraordinary to others…

My Breast Cancer Experience….

By:  Donna Keaton-North

February 2009

 

What a whirlwind it has been!  Finding out that I had breast cancer was almost more than I could bear but then my senses came back to me within an hour and I began to act!  I called another surgeon immediately.  I think that getting a second opinion or finding the right doctor is always to your benefit.  I did that, I found a wonderful surgeon who made me feel safe and that we would get through it together.  Guess what, we did get through it.

 

I found a number of people not just family who really cared, but people that didn’t know me from Adam.  Like Alice Krumm, what a wonderful, intelligent and caring person she is.  She helped me get through everything amidst my confusion of all the information that gets poured into you.  The nurses at The Women’s Center at Mt. Carmel Hospital, as well as everyone that I personally contacted for information.  This experience restored my faith in humanity, people really do care.  It’s just hard to find sometimes.

 

I had a huge decision to make.  I felt that it was really only my decision, it was my body and it was what I could live with.  No one else had to really live with “my decision” as much as I did.  My decision was bilateral mastectomy with reconstruction at the same time; it was what was right for me.  I didn’t want to go back and have any further surgeries basically because I don’t like pain, I’m a big chicken and knew that I wouldn’t want to go through it again.

 

The hard part was telling my husband right after I found out.  We cried and we cried a lot but we got through it.  Telling my son was troublesome because you still have to be a parent and assure the child that everything will be okay.  Next was to tell my mom and dad.  This was so difficult because they had already lost one child 20 plus years ago.  I tried to live my life as clean as possible and do “good” for others just hoping that I would live longer than my parents.  I felt that getting cancer I had let them down in some strange way.  Letting my one remaining sister know, was just as difficult.  She tried to be strong for me, but I know how much it took for her to do that over the phone.  She left her job and moved back home where she could be closer to the family.  My entire family was my salvation.  They stood by me through everything!

 

My cousin, MAW, what a deeply caring individual she is.  She had breast cancer about 5 years ago and knew basically what was coming for me.  She helped to prepare me in so many ways, went along to all of my appointments with me and firmly suggested the surgeon to go to before I made any decisions.  Throughout this ordeal she has kept in constant contact, visited and took me to doctor visits from time to time.  I’m deeply indebted to her for all of her support.

 

Surgery day!  I’ve never been sick before so this was all new territory for me.  I was very nervous, as would anyone be.  We got through all of the paperwork, what a scare that was, but you have to know that any surgery presents risks and the hospital has to let you know them up front.  Finally relief, I received meds to help calm me and some fluids which helped with the headache that I was getting because I couldn’t eat or drink anything that morning.  My family all told me they would see me when I was done and off I went, of course, I don’t remember much of anything at that point I was pretty loopy!  I went to sleep with some old saggy “girls” and awoke with perky puppies. 

 

Surgery took about 5 hours.  The surgeons, cancer surgeon and the plastic surgeon worked in tandem through my surgery.  As one completed the right side the other surgeon came in behind and put in the implant then moved to the left side.  They did such a good job!  Boy waking up wasn’t the greatest thing, but at least I had some good pain killing meds, they worked!! 

 

I had to go back for a lymph node dissection because the test that was done during surgery didn’t show any involvement.  However, when the final report came back from the pathologist there was one lymph node that was cancerous.  So, back to the hospital about a month later for that surgery.  I had 13 additional lymph nodes removed which turned out to be cancer free!  Finally, some good news!!  This helped to determine the next steps in my treatment….Chemo!

 

Chemotherapy!  I was fortunate; I was prescribed 4 treatments given every 3 weeks.  Treatment has a cumulative affect so each one was a little more difficult than the next.  Neulasta, this shot sure did give the words body ache a whole new meaning!!  Not fun and really caused some side affects that I don’t want to go through again!  My heating pad and I became good friends for a few days after treatment.  The heating pad seemed to be the only real relief for me.

 

Some of the key things for me were:

• Follow whatever the doctors were telling me to do.
• Exercise is a big part of recovery, this really helped me.  I got through each treatment quicker and it seems that I’m recovering faster now that chemo is finished. 
• Hair, don’t worry about, it will grow back.  I had a blast buzzing my hair off and we made a recording of it.  We laughed all the way through the hair cutting experience!  I think that cutting your hair as soon as you start losing it relieves the stress of seeing come out gradually then having to clean it up or watch for it when cooking, yuck.  Most people that I talked to said the same thing.  Even some folks that didn’t cut it right away said that they wished that they had cut their hair earlier than they had.  Once they did they said it was a relief. 
• Baby wipes because everything is so baby like!  After that first treatment and losing my hair, my skin was so tender, yow! 
• Eating was difficult sometimes, but not horrible.  I ate very bland for several days after treatment but once I felt better I ate more of the things I liked.  Drinking lots of water before, after, and during treatment is a must.  I still drink a lot of water but I always did.
• Keep a positive attitude!  Having a positive frame of mind got me through cancer.  Keep laughing at everything, I sure did.  J
• Talk to people, they will listen and help you.  Ask for help when you need it, people want to help they just don’t know what to do for you.  Communicate!!

 

All in all, I feel that I’m the luckiest person because we found the cancer early, I had excellent care from family, friends, new friends (my breast cancer advocates) and a medical team that helped me get through.  God blessed me with the ability to see the positive things in any situation and keep positive throughout.  The rest of my life will be different because of this experience.  I only hope that I can give back as much as I received.

 

 

 

So… I got a great opportunity to use my nursing and leadership skills to work more with cancer patients. I interviewed and accepted a position for a nurse manager position at a top ranking comprehensive cancer center.

I am so excited to be able to reach out to patients and to healthcare providers with respect to cancer patients. I am excited for the challenge of learning a new role and I don’t even mind putting Beyond Pink on the back burner for a while until I get acclimated.

So let’s do it! I’m ready…no problems…right?

I never really thought about the implications that a cancer patient has when they decide to switch jobs. All of the sudden all these thoughts went rushing through my mind.

I was switching jobs…which meant I had to switch insurances… which meant I had to switch doctors.

 “Switch doctors? Are you crazy? These are the doctors that know me…..that really know me.  They have been with me during my darkest hours…they have helped me through my journey. I could be vulnerable in front of them…I trusted them.”

Not only did I feel that way about the doctors, I felt that way about my co-workers…my co-workers that I was about to leave.

Over the past eleven years we shared so much as most do in their tenure at a workplace. But this was different. They rallied around me. They saw me at my weakest…they new the battle I had faced. Now I’m going to have to start fresh. And what does that mean? I don’t want pity, but I guess I just took comfort in knowing that people I worked with were present during my treatment. It is so much a part of my life that I felt like they understood that. Now how will I transition into this new setting? So unfamiliar… the unkown… not quite unlike what I experienced a few years ago…

I had 26 lymph nodes taken from my right side when I had my mastectomies so lymphedema has always been a concern of mine. I am always cautious with my arm being careful not to overuse it and being watchful of  any cuts or injuries. More information about lymphedema can be found through The National Lymphedema Network at http://www.lymphnet.org/lymphedemaFAQs/lymphedemaFAQs.htm

I recently read an article online at http://www.msnbc.msn.com/id/28424346/ that I thought folks might be interested in reading. 

Wrestling bulging arms after breast cancer:Medical institutions try to prevent under-diagnosed lymphedema

 Updated 5:08 p.m. ET, Mon., Dec. 29, 2008

WASHINGTON - Hospitals in about a dozen states are testing whether some simple steps, such as arm-strengthening exercises, could reduce the risk of one of breast cancer’s troubling legacies - the painful and sometimes severe arm swelling called lymphedema.

 Lymphedema has long been a neglected side effect of cancer surgery and radiation: Many women say they never were warned, even though spotting this problem early improves outcomes.

 And while less invasive surgical techniques mean fewer breast cancer patients today than just a few years ago should face lymphedema, it’s a lingering threat for tens of thousands of survivors because it can strike two decades after their tumor was treated.

 ”I have ladies tell me the lymphedema is much worse than their cancer because the cancer’s cured,” says Dr. Electra Paskett, an epidemiologist at Ohio State University who is leading the first-of-its-kind research into possible protective steps.

Among them: Wearing elastic sleeves to counter temporary swelling during things like airplane flight or heavy lifting, and doing special exercises with light weights designed to help keep open the lymph channels that allow fluid to drain through the body.

 ”The theory is building up muscles in your arm acts as a natural pneumatic pump to move the fluid,” explains Paskett, herself a breast cancer survivor who developed lymphedema.

 When lymph nodes under a breast cancer patient’s arm are removed or damaged by biopsy, surgery or radiation, lymph fluid can build up and cause anything from mild swelling to a ballooning of the arm.

 Lymphedema isn’t just a legacy of breast cancer treatment. The leg can swell if groin nodes are damaged from other cancers, including gynecologic cancer. Melanoma treatment left former presidential candidate John McCain with facial swelling. Occasionally, rare diseases can trigger a different form of lymphedema.

 But lymphedema among breast cancer survivors may be most common. It’s been estimated to affect between 20 percent and 30 percent of patients who have 10 or more under-the-arm nodes examined, called an “axillary lymph node dissection.”

 A surprising study published in November’s Journal of Clinical Oncology suggests few such women may be diagnosed. University of Minnesota researchers analyzed records from the huge Iowa Women’s Health study, to cull more than 1,200 patients who’d had breast cancer between 1986 and 2003. Eight percent had been formally diagnosed with lymphedema yet another 37 percent of the women suffered persistent lymphedema symptoms, including a swollen arm.

 Today, some women have far fewer nodes examined in a “sentinel node biopsy,” and separate research suggests those women are far less likely to get later lymphedema - possibly as low as 5 percent, Paskett notes - although many don’t qualify for the smaller surgery because of large tumors or other factors.

 But perhaps most concerning from the Iowa data, only 40 percent of the women with swollen arms but no diagnosis had heard of lymphedema and less than 2 percent had sought care for their arm symptoms.

 Yet early care is key, as Anne Holman of Washington, D.C., can attest. In 2006, doctors found cancer in eight of 18 lymph nodes. She was undergoing chemotherapy to shrink her tumor before an eventual mastectomy when one day her arm turned red and itchy. Come in right away, said Minna Manalo, a nurse practitioner at Georgetown University Hospital’s breast cancer unit.

 Along with a skin inflammation, Manalo diagnosed lymphedema - Holman’s arm was just starting to swell. Daily for two weeks, she underwent what’s called complete decongestive therapy, where a machine massaged fluid from her arm and it then was tightly bandaged to counter swelling. Once her arm shrank, Holman was prescribed a lifelong therapy: A tight elastic sleeve and fingerless glove to wear regularly, especially during her job as an international flight attendant, plus arm exercises to help push out returning fluid.

 ”I’m trying to stay ahead of the game,” says Holman, 61. “You can’t cure this, but you can manage it.”

 Paskett’s study - now recruiting participants at Ohio State, Georgetown and a growing number of other hospitals - tests whether milder versions of those techniques could prevent lymphedema in the first place. Women recovering from a large node removal are randomly assigned to either a regimen including personalized arm exercises, or just lymphedema education.

 

 

Survivors: Nominate Your Caregiver for Stefanie’s Champions 2009!

 

 

Those who have been through cancer treatment do not normally have the luxury of an ache and pain as the underlying current of anxiety rears its head at every opportunity. The key here is to recognize how these emotions are triggered so that one can better cope with them. This is a great time to utilize to your support system.

Survivorship is for a lifetime ~alice

 

Read on as one survivor shares his story…

 

It’s a little cold, but it’s a beautiful day. Not only is it Christmas day—it’s the 5^th day of Chanukah (the festival of lights).  The sun is shining both outside and inside our home.  It’s a beautiful day because I’m a breast cancer survivor and I woke up today.  That makes it a good day. 

 

I’m one of 2000 men a year who are diagnosed with breast cancer—compared to almost 200,000 women diagnosed with breast cancer.  Men are 1% the rate of women.  But look at it from my perspective.  I‘m one of those men—so it’s 100% for me.  I won’t go into “my story” here.  I’ve done that before. 

 

But let me say that as a guy I have feelings.  I hurt, I cry.  But then I get up and go on.  My faith in g-d has been with me all the time.  I have hope—and I try to manage those lingering fears about cancers recurrence. 

 

Let me tell you about my Chanukah “present”.  My 1^st mastectomy was December 3, 2007, just over 1 year ago.  It was a radical.  It was painful and the healing took a long time.  I had difficulty with some movement and breathing.  I was blessed in not having to do chemo or radiation.  I take tamoxifen.  But we decided to fix the problems with reconstructive surgery. That surgery was in September 08. And it included a subcutaneous mastectomy of the other breast.  Alice was helpful in pointing out things for me to think about and I feel that I made the right decision. I am healing from that surgery. 

 

A few months ago I began to notice some pains in my lower back.  Not the same old pains, but new pains, different pains.  It sometimes affected my walking kind of pains.  It affected my sleeping kind of pains.  Now my emotions started to speak up. 

Suppose its cancer coming back!  Suppose it’s metastasizing and going into my bones! 

Maybe I should have done chemo and radiation. 

My positive thoughts were leaving me.  I was quite concerned.  I emailed my oncologist (a great way to communicate) and she said the likelihood of recurrence was quite remote for me.

 

Strange—but that didn’t help me much. 

 

Last week I had a routine follow up with my surgeon. I had described my concern to the nurse practitioner.  The surgeon said everything was fine with my surgery.  He asked about my back and as I described it he said it sounded like it was musculoskeletal.  I didn’t say a word—just looked at him. 

He said, “Would you like to have a bone scan?” 

I said yes. 

I wanted to know what it was—not what someone thought it was.  He agreed and the scan was scheduled for Tuesday December 23. 

 

OH THE THOUGHTS I WAS THINKIN’

The week before my scan was very difficult.  I kept thinking about the scan.  What if it was cancer returning to my bones?  I knew it would no longer be curable.  How long would I live if it had returned to my bones?  I am incredibly claustrophobic could I get through the scan (it’s much easier than an MRI). How could the doctors be so sure?  And on and on—and the more I thought about it the more convinced I became that it was probably cancer. 

 

I have a very supportive circle of “cancer” friends and supporters.  Almost all of them are survivors.  I have allowed a few “civilians” into my inner cancer world.  My thought is that if you haven’t had cancer you really don’t know what I am going through.  My supporters all listened—thank you for just listening.  Nobody said it’s probably nothing.  One of them asked me did I have a thought about what it would be.  I didn’t answer the question.  I had my thoughts but I didn’t want to say to someone else—out loud—what I was thinking privately.  I remember praying and talking to GOD.

 

The day before the scan I became very calm.  I still didn’t know what the result would be.  I’ve had that feeling before and I thought that everything would be for the best.  Even if it the scan wasn’t good news, I would be ok.  For I have hope.

 Having survived cancer has taught me to enjoy life each and every day.  I’ve moved from living my life in “living color” to living my life in “high-definition”.  Every day is a special day, because I am alive.  It would be whatever it was going to be. 

 

The day of my test came and I went and had the radioactive shot and then came back 3 hours later for the scan.  The scan took about an hour.  They did the full scan and then said they wanted to do some extra pictures.  After it was over I naturally wanted to know.  The results were in the scanner software and now I wanted to know.  Of course the techs didn’t know.  They said it didn’t usually take long to get the results.  I had already called both my surgeon and my oncologist to see if they could get the results so that I would know before Christmas. 

 

Thursday (December 24^th), the phone rang at 8:30 am.  It was one of those wonderful nurse practitioners.  She called and said THERE WAS NO CANCER.  She said a few other things after that but I didn’t really pay much attention.  I DIDN’T HAVE CANCER!  She said I had some arthritis.  I never thought I would ever be happy to hear that I had arthritis—but I was on that day.  Because I didn’t have cancer.

 

I called—not emailed—called all of my support group buddies.  This has been my first real crisis of thinking that cancer had returned.  I’ve been told that it won’t be the last.  I hope I’ve learned something from my experience.  I have hope. I’ve learned about the power of hope.  I’ve learned that cancer is a big problem but cancer is not a death sentence.  Yes, unfortunately we lose people to cancer.  But I am a survivor and I am a thriver.  Yes it’s possible that cancer can kill me some day.  But I’m not going to let cancer beat me.   And if cancer does return someday, I will do a better job of dealing with it. 

 

Steve Pollack

Welcome to Beyond Pink’s online blog! This forum will be used to explore topics surrounding cancer treatment, and living life beyond treatment.

If you have a topic that you would like to see explored, if you have a story that you would like to see posted, please send it to Alice in an email at alicek@beyondpinkonline.com,

You are encouraged to write about your feelings and share your stories about yourself or someone you love. You can write about practical things that have helped you through your journey. You can write about people’s reactions.

Just email your stories to Alice!

You can ask Alice’s opinion on subjects as well.

This forum is meant to offer encouragement through shared fellowship. We will laugh together…we will cry together

Please remember that comments on this forum as well as Alice’s opinions are no substitute for medical or psychological advice.