Second Chemo, CT, New Port

Ugh!  What a week!  I’ve been up since 4 am going over the dozens of ways I could write this post.  SO many thoughts, emotions, tests, news, procedures..etc in the last two weeks that it’s hard to know where to start and what to share.

So I decided to spare you all the horrible things that goes thru a cancer patient’s mind when given the news that you are now stage 4.  I’m sure you can imagine.  Suffice it to say that all my affairs are in order and I’ve done everything I can think of to make the worst case scenario easier on my family.  That’s not being morbid or giving up.  It’s being a smart, caring adult so stop your “oh no! Don’t think like that…” objections.  Being prepared is something every wise adult should do NOW.  You never know when that anvil will fall from the sky or that Mac Truck finds you.  I’ve seen the pain and problems that an unexpected death can cause a family.  Please think of them!

Anyway..onward!

I was a master at faking out the parents at being sick as kid.  Sure, I was a decent actress in my day, but any decent actress will tell you that you have BE the part, FEEL the part.  Even as a kid I knew that if I focused on a symptom (sore throat, sweaty head, cough, even fever) I could MAKE it happen.  My body would listen to my mind and I would actually begin to really FEEL sick which made it easy to fool the ‘rents.

Well, nothing has changed.  My mind still has the power to control how I feel.  No, it’s not a super power that I can use to instantly heal myself but I CAN control the extent of how a symptom affects me.  But I’m here to tell you that using this ‘power’ is hard as hell when you are FOR REAL sick!  The last few weeks have been rough on me.  I haven’t been sleeping and being exhausted on top of being sick on top of getting bad news…well, it got the best of me for a while.  But I got sleep last night and news that helped.  So here is a recap of this week:

TUESDAY:  I was at the hospital at 6:30 am to get a new port put in.  I was NOT happy about this but once I got over the pissiness of it’s necessity,  I knew to be happy that I will not have a pin cushion arm anymore.  Too bad they had to stick me the conventional way for the surgery.  This time, the port was put in using a topical anesthetic and twilight sedation -which meant that I was “awake” for the whole thing.

Speaking of mind over matter, it took some serious talking myself down at the beginning of this surgery.  As soon as they laid me flat on the table, I felt like I was having trouble breathing.  I’ve been sleeping with several pillows under me for the last few weeks so I was concerned that my lungs would be unhappy with me and sure enough, as soon as they laid me back I started having trouble.  It took every effort not cough -especially when they stretched me back even farther to open up my neck/chest area.

I told myself over and over again that I am in a hospital hooked up to tons of machines that are monitoring me and oxygen levels.  I was ok.  Luckily, they gave me the sedation meds fairly soon and I cared not after that.

I could hear the surgeon tell me what he was doing and I know I asked him a couple of questions during the surgery but I no longer remember.  All I really remember is that everyone in the room looked to about 12-14 years old and they played cool music.

Because this was general surgery, I was given no pain meds and the recovery time was minimal.  But no pain meds meant that as soon as the local wore off and I started coughing it cause great strain and pain on the surgical site.  Thank goodness I had some pain meds leftover from my other surgeries.

WEDNESDAY:  After another night of minimal sleep I was up again for another CT scan.  This time on my abdomen.  Doc wanted to be sure Larry didn’t spread his spawn anywhere else.  I was told that I could use the port right away for the contrast to be injected, but I was still so sore that I asked her to just stick me the old fashioned way.  Yup -it took two sticks.  OW.  The scan was quick and I was given a CD of it.  Again, my untrained eye couldn’t see anything unusual on it but I figured I would find out the next day when I went in to see the onco again for chemo.

I took one more pain pill in the morning.  The surgical site is still a little sore, but it was manageable.  I also took great pains to control my cough.

THURSDAY:  My onco gave me a bunch of good news yesterday.  First -that he saw nothing new on the CT scan in my abdomen.  The other was that he DID see I have pneumonia.  I see this as good news as it explains how crappy I’ve been feeling (as opposed to my problems being a result of the cancer) and its something that is fixable.  He gave me a stronger antibiotic which seems to be helping already.  I took a pill last night and got some decent sleep too which also helps.  Thank you Jesus!

The third bit of good news is that not only was the Keytruda approved, but my clinic requested they overnight it so I could get my first infusion yesterday.  So I got an immune killer and an immune booster at the same time.  Go figure.

I asked the doc about how well it will boost my immune system – like will it help me kick the pneumonia too?  He said no.  What the Keytruda does is kill off the PD-1 pathway that cancer cells use to hide from your immune system.  With this pathway gone, my immune system should recognize that the cancer is not supposed to be there and will do it’s thing to kill it off.

Hmm.  My natural immune system that has been suppressed for months by taking damn chemo pills and now a new chemo infusion.  So what I’m hearing is that I need to do everything I can to boost my system despite the chemo.  I’m back to taking astragalus and echinacea, vitamin C and all the other stuff I do to help my system.  As soon as I can take more than a few steps without getting winded I will go back to walking every day.

So far, I don’t seem to suffering any side effects from either drug.  I’m expecting some fatigue but its hard to judge when it happens cuz I’ve been so sick and tired anyway.  It’s 2 pm now and I’m still feeling fairly decent despite the cough that is giving me sexy voice.

It is AMAZING how feeling physically better also improves your mental attitude.  I am back to feeling hopeful for this new treatment and back to feeling a little more like the strong warrior you all seem to think I am instead of this sick wimpy slug I’ve actually been lately.

Thank you again for all your prayers and good thoughts.  ❤

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New Game Plan

“Are you ready?” Jane, my favorite chemo nurse asks me just before she sticks the needle in my arm… again.

I throw her a look and mumble uh-huh then look away again.  This sucks.  But its not her fault that she is having trouble finding my vein.  The stupid chemo pills I’ve been taking for last six months have been obviously ineffective at killing cancer, but has been greatly effective at giving me side effects…like constant dehydration.  Even the last few days of pounding down liquids to help ease this bronchitis hasn’t helped fill up my veins enough for an easy stick.

My onco’s nurse took the good vein in my hand to do her blood draws but even that was a slow drip.  Unfortunately, they can’t use the same spot for the chemo.  After a few tries to find a vein along various spots on my arm, Jane finally ended up using my hand as well about an inch away.

She highly recommended getting another port put in.  After all that, I tend to agree.  I was hoping a Picc line would do the trick, as that is not so permanent a solution.  But after hearing my onco tell me that I will be taking Keytruda for the rest. of. my. life.  I guess a perm solution is the right course of action.  Sigh

Ugh!  Once a month forever.  I suppose that’s better than alternative, right?  Here’s hoping this will be a pain in my ass for many years to come!

Altho Keytruda is today’s “miracle” drug, they can’t say that it CURES cancer.  It’s too new and the best they can legally say is that is can put you in remission…indefinitely.  But since cancer cells are microscopic and not often found in the blood stream, there is no way to know if/when it comes back till it’s bad enough to give you symptoms.  So they simply take the safe route and give you a treatment once a month to keep that from happening.  I’m fine with that.

It’s just….well… I was hoping to be DONE with cancer.  Hoping to put it behind me and finally get that tummy tuck and new boob.  Who knows now how long that will be – if ever-  before it can happen.  Anyway… enough feeling sorry for myself!

Yesterday’s chemo treatment (aside from the numerous sticks) went pretty quickly.  It’s a much shorter treatment than the last time when I was stuck in that chair for 3-4 hours.  This was maybe an hour and I felt fine after.  No nausea (thank you pre-meds!) or anything.  In the future I will drive myself and catch up on my reading again.

I did feel a little sick later that night but if I’m honest – it was probably the dozen bacon wrapped shrimp I ate for dinner. lol  I’m told if I get fatigue (likely) it will probably be on Sat and/or Sunday like before.  Last time, I was told to exercise anyway as it helps your immune system and actually gives you energy.  But I’m having a hard time breathing if I walk too long so I’ll have to take it easy till the drugs start to work and shrink stuff in my lungs.

Of course, the no daily walks is not helping my waistline 😦  And the doc doesn’t want me to lose any weight during chemo so I’m just hoping not gain any MORE till I get my energy back.  Especially now that the tummy tuck I was looking forward to getting isn’t gonna happen.  BOO!

Sooo:  I get the port put in on Tuesday (quick surgery).  I have another CT scan on my abdomen on Wednesday – just so doc can get a better big pic of where Larry may have spread his spawn.  Then another chemo on Thursday.  It will be the second treatment of round 1.  Then I’m off for a week, then Round 2.  The Keytruda isn’t likely to be approved and ready by next Thursday so that will likely wait till round 2.

All in all, I am doing ok.  I am keeping the bronchitis symptoms at bay and getting some better sleep at night.  I have a humidifier running 24/7 these days which is helping me breathe better and keeping Ferris’ dandruff at a minimum.  So he’s happy.  He’s also happy that I am spending more time at home and giving him shrimp treats.  Funny, HIS tummy did fine with it.

People keep asking me what they can do to help.  I feel so loved -thank you!  There’s really not much I NEED right now but I will be sure to ask for help when I need it.  Please!  No more candles!  They smell awesome but will make my lungs worse.  If anyone feels they HAVE to do something, I do spend a lot at the supplement/organic store online.  They don’t have giftcards tho so I guess the easiest thing to do is donate to my paypal account (paypal.me/GailsCancerHelpFund).  I use paypal for my http://www.vitacost.com purchases.  I highly recommend this site!  They have quality products for far less than most sites (even Amazon!) and they usually deliver within two days.

Enough for today.  I need to get this posted as I’m getting of people checking on me.  lol  I’ll post again next week after the port.

Happy New Year everyone!!

 

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Not Great News

I stop for the fourth time to catch my breath as Kris and I climb Stone Mountain.  This climb is something I’ve always wanted to do and I finally got someone to go with me.  Beautiful fit Kris in her little spandex pants is bouncing with energy super glad to see this amazing rock formation in Georgia.  She is making me feel like a fat cow!

As I suck air into my lungs and try to calm my racing heart I chastise myself for being a slug lately.  Ugh!  The new job has taken so much time that I found myself neglecting getting my daily walks in and now it is really showing.

Nearing the top, my cheeks are now flushed and I am beginning to feel sick.  Why didn’t I bring water with me?  Doh!  I sit on a rock and try to catch my breath which is honestly hard with such breath taking views from up here. (feel free to groan).  I tell Kris to go on ahead.  I know I’m not gonna make it all the way to the top and we are almost there. I give her my phone to take some pics and take the time alone to talk to God till she comes back.

Later in the day still feeling like a loser I wonder if the chemo pills are to blame.  You all know how I LOVE to blame the chemo pills for EVERY THING.  so I google side effects and discover that anemia is a common side effect.  The lowered blood counts will cause -get this: easy fatigue and loss of energy, unusually rapid heart rate and shortness of breath -particularly with exercise.  BAM!  There ya go!  I found my excuse and was sticking with it!

The next few weeks I continued to decline in the energy department despite my efforts to raise my blood counts.  Lots of spinach, B vitamins, red meat and even some dark chocolate were on my daily plate.When the pain in my left chest continued to worsen I decided to complain to my onco about it on my next visit.  After all, it has been almost 4 months since radiation.  When was this sucker gonna start to HEAL?

He felt along my side where most of the pain was and said he didn’t feel anything unusual.  He also said that cancer doesn’t hurt (mine did) and that you usually can’t feel it (I could) but if it would put my mind at ease, he ordered a CT scan of my chest to take a look.  This tightness in my chest could be a number of things including radiation damage or my skin tightening because the radiation.  He said there was psychical therapy that could be done.

The scan was scheduled for the following Thursday.  By the the day of the scan I had begun coughing and wheezing and had a low grade fever.  Thank Goodness!  I know its weird to be glad to be sick, but it was a relief compared to what my mindf*ck mind was coming up with as potential causes.  Cancer doesn’t give you a low grade fever and I’m pretty sure you don’t cough up mucous all morning.

The scan itself was easy breezy and took less than 15 minutes.  I waited for the technician to give me a disk with my results which I promptly viewed as soon as I got home.  I was told the doc MAY get back to me that day, but more likely not till Friday.

So yeah, I did the untrained eye thing and tried to see if I could see anything on my scans.  I was quite sure I had “radiation pneumonitis” since I had ALL the symptoms and the timing was right.

I googled images of what pneumonia looks like and could find anything that really looked like what my scans were showing.  In fact, I began to get a little scared because my scans looked more like the images of lung cancer I kept coming across.

Ugh!  Gail!  This is why sometimes the Gail Google Queen thing is not recommended.  I know I was geeking myself out over nothing.  I forced myself to be patient and wait from the doc.

Easier said that done of course.

I got the call Friday morning from his nurse asking me to come in so the doc can go over the scan results with me.  My heart sunk.  I knew then the results were not good or he wouldn’t have simply given me a script over the phone.  Below is the recording of our conversation:

Obviously devastating news.  I decided I didn’t want to tell anyone over Christmas but this sort of thing doesn’t sit well in your soul and I slowly began to tell people over the next few days.

I’ve learned its all in the telling.  I am the kind of person who did not hear a death sentence in my doctor’s words.  I simply heard what the next steps are.  The Keytruda has done amazing things and been quite successful in treating various different cancers.  This was the immunotherapy drug my doc had tried to get me into a clinical trial of after radiation.  I didn’t qualify then but I now qualify for “compassionate use” of it.  I’m excited to see how it works for me.

I will write another post detailing Keytruda and the other chemo I will be starting on Thursday.  Till then, never ending prayers for my family is what I need now.  Thank you for your continued support!

TGBTG!

 

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The “before and after” Life

The dealership FINALLY had the airbag part in to complete the recall repair notice I got almost 2 years ago.  I was happy to bring my car in and even happier when they gave me a loaner car while they did the repair.  The car was the 2016 version of the car that 2010 car that was being repaired.

I sat in the car, enjoying that new car smell and updated gadgets.  Of course I wished THIS was the car I would be driving for the next several years instead of riding out my current car loan.  Suddenly I was struck with a thought that rocked me a bit…

Don’t take on a bigger payment – you might not be here next year.

But then again….with joy I realized that I am now at the point where my mind even went to a future thought.  There was a time I couldn’t even think past today or tomorrow.  When you are in the midst of cancer treatments …when you have a known tumor resting or growing somewhere inside your body…all you can think about is what you can do to get it GONE and what will happen if you don’t.

The third worst thing about cancer is that it’s a mind f*ck.

The first worst thing, of course, is that it can take your life.  The second is the damage it and the treatments do to your body.  But if you can survive all that, you will deal with the mindf*ck for the rest of your life.

Here are some examples of how it messes with your mind:

I’ve had a few days in a row with a slight headache…

BEFORE (cancer):  Dang.  You need to drink some coffee, Gail, and combat this caffeine addiction you have.  Or -you need to drink more water, Gail!  You have been dehydrated for days and the coffee is only making that worse.

AFTER:  OMG -did the cancer spread to my brain?

I’ve had a slight cough every morning for weeks…

BEFORE:  Ugh!  Am I coming down with a cold again or is it allergy time of the year?  Maybe I need to de-fur my bed again…after all -you are allergic to cats…

AFTER:  uh-oh.  did the cancer spread to my lungs?

Will you come to Thanksgiving at your parents in KY this year?

BEFORE: Well, that depends on a variety of factors.  Whose is going to be there?  What does the timing look like?  Do I have enough money for the trip?  Have I seen the family the rest of the year?  Is there anyone to take care of my cat?

AFTER:  What if this is the last Thanksgiving you get?

Having a bad hair day during your monthly when you are feeling fat…

BEFORE:  *Hides in the house wearing sweats and eats chocolate.*

AFTER:  F*ck it!  At least I HAVE hair!  But still avoids that incredible awesome chocolate because sugar feeds cancer…  dammit.

I am actually happy to report that now that I am a few months out from radiation and it seems like we finally nuked Larry the lump to hell where he belongs, I’ve noticed that much of my thinking is beginning to revert back to my BEFORE cancer brain.  Not that my old way of thinking was better – but that I CAN think that way again.

BEFORE cancer my head was filled with future thoughts.  What moves do I make in my career to advance?  What guy do I date that may become a lifelong partner?  What repairs do I make to my home so it gains value?  AFTER diagnosis none of that seemed important any more.  Living to the next day was all that mattered.  New thoughts took over my mind in the last year like:

The sun feels incredible on my face.  What a beautiful day the Lord hath made!  Enjoy the breeze on your skin and the birds chirping while you are blessed enough to be able to walk today.

*Looks around my house*  Is this my last home?  Will I die IN this house?  IN this bed?

I’m going in for yet another surgery.  Are my affairs in order?  Did I tell my son I love him?

The boss wants me to work this weekend.  Screw that!  Who cares about the medical bills?  They will get written off if I die.  Its more important to have fun while I still can.

It’s funny how one’s circumstances affect how you think.  Now that it seems I really AM a survivor, I have to go back to thinking and preparing for the future.  I can stop focusing on myself so much and go back to putting other’s ahead of me.

Today’s sermon in church was all about freedom.  The freedom God gave you with the gift of His son.  It got me thinking about the freedom after cancer.  It’s also not just a freedom FROM cancer, but the freedom TO do something more with the rest of your life.

Do I really want to go back to my old way of thinking?  Sure, some of it is good.  It’s good to have a future plan, to work towards something, to take measures to be secure and safe and leave something good behind.  But what about all those thoughts that I was able to let go that made me a better person?  Self deprecating body image thoughts (ok- I STILL do that, but not as bad), putting off seeing people and spending time with those I love because something else seemed more important, stressing out about what others thought of me, ..etc.  I DON’T want that way of thinking to come back.

But it is SO easy to slide back into my old life.  So easy, in fact, that I didn’t even realize I’m doing it until something comes up (God smacks me) to wake me back up.  My struggle now is that I LIKE living a life that has a potentially long future to it.  It means I’m LIVING.

But I don’t want to lose the good part of cancer thinking.  The paying attention to and appreciating the little things.  The new priorities.  The feeling of peace knowing that I’m ready and prepared should tomorrow be my last day.  I know it sounds weird -but getting cancer was actually a blessing for me.  It woke me up.  It showed me who my true friends were.  What true priorities are.  It helped me let go of angers, frustrations, old grudges.  It taught me to let go of the petty things and look for the good in people and in situations.

Trust me, friends.  THAT is the way you want to live.

Now if only I can keep the mindf*ck away and stay focused on those good things.  My before and after shots are not something you can trick a camera with.  And like dieting, it’s far too easy to go back to the BEFORE shot.  At least the mindf*ck reminds me of that and it eventually steers my thinking back to the good AFTER of cancer.

So thank you, Lord.  Thank you for showing me yet again how something I thought was bad can actually be used for good.  May THAT thought over ride all others.

 

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Clinical Trial -Next Step?

“I regret to inform you that you don’t qualify for the study.”

The study coordinator’s words were a blow.  My heart sunk.  Apparently, the fact that I had a mastectomy FIRST before beginning chemo is what makes me an unsuitable candidate.  They are looking for people who had a tumor that was not eradicated by chemo… WHICH WAS ME….but the study’s “rules” are that patients could only have had surgery after chemo -not before.

My oncologist and I finally agree on something – this is stupid.

After all – the fact that my cancer came back in the exact same spot was almost like a do-over.  But I guess rules are rules.  Doc Peacock also feels this study is “almost unethical” since a recently published study proves that taking Xeloda after chemo or radiation can increase the chances of no recurrence.  This study randomizes patients into 2 categories – those who get the drug (Keytruda) and those who are merely watched taking nothing.  No -there is no placebo drug given as Keytruda is given intravenously.  But now (likely months or years after this trial was originally submitted for approval) any oncologist worth his/her salt would never recommend their patients not take whatever drug could increase their chances of survival just to be watched in a clinical trial.

Ssoooo -there goes that.  Boo

For those unaware of what Keytruda is, its an immunotherapy drug that has been quite successful treating other types of cancers.  It just hasn’t been approved for breast cancer yet.  That’s what this trial is all about.  It was my chance to take a drug that boosted my immune system instead the Xeloda, a chemo drug that harms it.

So now I am back to taking the same chemo pill that I was taking during radiation.  Only now I take 7 pills a day for 2 weeks then take a week off.  When I asked who came up with that dosage, I was told that the pharma companies dose by trial and error and simply see what works and whats tolerated.  oh joy.

Apparently, Americans do not tolerate this drug as well as Europeans because of our crappy diet.  We have too much folic acid in all our processed foods and it seems folic acid affects this drug.  Me and my big mouth told him that my diet was better than most Americans.  He skeptically told me that folic acid is in breads and pastas and most processed frozen type meals.  I laughed and told him I haven’t eaten flour, sugar, rice or potatoes in almost three years (ok -the occasional meal nowadays) and that I avoid processed foods and attempt to eat whole foods – simply meat and veggies and that I am not a fan of wine or beer either.

He wow’ed then decided he could increase my dosage by an extra pill.  Dammit.

No more finger prints!

I just finished my first 2 week cycle.  Though my stomach tolerates the pills quite well (diarrhea is a common side effect) I AM beginning to get the hand and feet syndrome issue.  My fingers and toes are getting shiny and red and beginning to peel in some areas.  Of course they are all sore and my joints feel like I have arthritis.  I use a lot of lotion and just bought a parafin wax bowl which provides me warmth for achy joints and conditions my skin.

What surprised me was how dry my lips got as well.  I realize now that the medicine dehydrates you.  According to literature -women over 40 have more of a dehydration issue than any other group. I wonder why?

Now I understand why these pills didn’t affect my fingers and toes so much when I took them during radiation.  Not only was the dosage only 6 pills verses the 7 I take now.  I also only took them on weekdays and had weekends off.  But the biggest factor is that I stopped drinking alcohol during radiation to give my skin the best opportunity to heal and started drinking more water – to help flush the radiation out.  Two major factors in keeping your body hydrated.  Do yourself a favor and do NOT google images for hand and foot syndrome.  It’s pretty horrifying and enough to make me do everything I can to prevent getting that bad.

So BOO!  Just when it began to feel like I was getting my life back I get another daily reminder that I’m “still in treatment”.  Sigh  No more cocktail when I get home from my new 10 hour work days with an additional over 1 hour commute each way -which wouldn’t be so bad if it wasn’t for the bumper to bumper Atlanta traffic.  No more yummies in my coffee on the weekends.  Heck -I should even cut my coffee intake as well – it’s also a dehydrator.  Aarrgh…

BUT…before I go feeling sorry for myself, I need to stop to look at the positives.  Is this REALLY such a bummer?  I am grateful to have this as my biggest downer!  That means I am not fighting to save my life anymore.  I am back to worrying about my weight and diet instead of wondering if I will even be alive next year.  Thank you Lord!!

Besides – not drinking so much coffee and alcohol is just plain healthier anyway.  Sigh… And speaking of health – I will be able to keep up daily walks if my feet don’t hurt.  And the healthier my skin is -the faster I will be able to have what I hope will be my final surgery – to give my one boob a partner.

Speaking of which – I never realized how much I took having two breasts for granted.  Even having no breasts was a bit easier to deal with.  Though shirts didn’t fill out properly at least they hung evenly.  Even hangage doesn’t happen with only one boob.  Your body isn’t evenly weighted either.  Not that my boobs were all that immense, but the loss of about 500 CCs on my left side has thrown my equilibrium off.  It changes your gait and posture.  Even my belly skin pulls weirdly.

That’s why health insurance has to cover the cost of a breast form (prosthesis) and mastectomy bras.  These forms replace the weight on your chest and prevent back aches and spinal damage.  And the even out your sweater.  Woohoo!

Amazingly -these breast forms are quite expensive.  They run from $100 – $375.  Well, at least -that’s what they charge your insurance company.  You can find far more affordable (and just as good) forms online.  The cross dressers know what they are doing!  I bought a $30 pair online (which I got in 2 days) while I waited for almost two months for my insurance to approve my request and ship out the lightweight form that was supposed to be best during radiation.

Online boobs. I DON’T recommend getting these ones unless you WANT to look like you’re cold all the time.

The forms come in as many different shapes and sizes as do real boobs so it’s not so easy to find one that matches your own.  In this instance, the cross dressers got it made – they simply buy a pair – like the ones I got online.   <—-

The first insurance form I received was too big.  Seems even measurements can’t be accurate.  The one I have now is a lightweight fabric form that is less painful against radiated skin.  My skin was so burnt towards the end that I just met the world as Gail One-Boob; braless and baggy shirts.  One advantage of having a completely fake breast is that it does not need a bra.  So I got THAT going for me.

The mastectomy bras have special pockets in them to hold the forms.  Notice the flap on the bottom of my form below.  That is there so you can wear the form in a regular bra and tuck that flap under the cup to keep the form from floating around – or falling out when you bend over.  This actually happened to me before I found out what that flap was for.  Luckily it was at home with no one around to witness it.  Made me belly laugh though.

The fabric form is actually quite stiff.  It’s harder than a real breast but not as bad as the rock boobs I had with the expanders.  The silicon forms I bought online are heavier but softer and feel more “real”.  Then again, I doubt anyone giving me a hug could really tell the difference with any form so who really cares?  And I’m hoping to only need these forms for another couple of months so I don’t want to spend too much time and money on them.

So that’s my update these days.  I have happily moved back into boring every day where cancer doesn’t slap me in the face every morning.  When you DON’T hear from me on this blog its a GOOD thing!  I have stayed busy working a new job and finally spending the time with family and friends that I had to put off during treatment.

I should have named this post Pills, Boobs and Lots of Lotion.   I may have gotten thousands of hits but they would all be from teen aged boys.  Ha!

Smile!  And Be a Blessing!

 

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Final Radiation

Giving a nod to the Big Guy on my last day

“Have you been given your discharge instructions yet?” the nurse asked me as she handed me a slip of paper with those very same words on it.  After I shook my head, she sat down and went over the Do’s and Don’ts of radiation after care.

“Whatever you do -do NOT just pull off those stickers!” she warned.  “I watched a lady who rang the bell on her last treatment then pull off a sticker only to have a bunch of skin come with it.  The blood on her chest was some major rain on her big day.”

Dang!  I assured her that I would let the stickers come off naturally.  I didn’t ring the bell after my final treatment.  Sure, treatment wasn’t comfortable but it was a FAR cry easier than chemo.  Besides, no techs or nurses even accompanied me back to the lobby where the bell hung.   I had no one with me during this treatment and not even the receptionists knew my name.  It seemed almost…pathetic to ring this bell.

Radiation was certainly different than chemo in many aspects.  The biggest pain for me was the drive.  Chemo was a mere 7 minutes away and done weekly.  Radiation was an hour away daily.  The time and expense ($80 in peach pass tolls!) alone made this treatment a strain on my life.  I was glad that I did not have to burden anyone else with accompanying me.  Chemo was a few hours in a chair chatting with super friendly wonderful nurses who took a genuine interest in my life (or at least they fake it really well!).  Radiation was a few minutes with the techs then 10 minutes alone on a table.  In and out.  Impersonal.

Still, if I had my druthers, I would have never experienced either treatment.

I was told that my skin will “continue to cook” by a cancer sister.  The nurses stated it as “the cumulative effect of the rays will continue to deliver treatment” so I should be prepared that my skin will get worse before it gets better despite having no more sessions.

I’ve seen pics online so I can state with confidence that I really should not complain.  So take the rest of this paragraph in the spirit of educating others, not whining.  You can see in the pic that my skin looks like its sunburned in a square shape.  It’s kinda freaky how precise this machine is but I’m grateful that it is!  The pain really only began in the last week or so.  But its nothing I can’t deal with.  I have been religious with the Calendula cream and will take an Ibuprofen when the pain gets to me.

I am now in possession of my Bolus – the gel cover that was used to redirect the rays closer to the surface of my skin.  You can read more about it’s purpose HERE.  They cannot re-use them and I’m sure my insurance paid a pretty penny for it, so I requested to take it home with me.  Apparently I am not the only person to ask.  I was told another lady uses her to cool her skin after treatment.  I thought was a wonderful idea so when I got home, I put mine in the fridge.

The next day when I got home from treatment, I took the chilled Bolus out of the fridge and laid down on the bed.  I gently laid the gel on my chest and just about jumped out of my skin!  Holy cow that was COLD!!  It was like slowly edging into the cold water in a lake.  Once it hits your belly you can’t help but to squeal.   Brilliant idea in theory but not so great in the execution.  It still sits in my fridge, unused.

I did have a wonderful experience on my last day of treatment though.  Winship is a very busy cancer center.  The radiation department has several rooms of different machines designed to spit death rays at all sorts of different body parts.  The waiting room is always full.  But treatments are relatively quick so the waiting room turnover is pretty fast.

Still, most people have their appointments at the same time daily so the faces get to be familiar after a while.  Fortunately, none of us spend that much time waiting as the clinic has got the process down flat.  As I was leaving one day, there was an Asian lady and her husband that got into the same elevator as me.  I recognized them from the waiting room, but since no one talks to anyone else in there, I just smiled and said “Hi”.  They were really nice and said they had seen me there several times.  I told them I only had a few treatments and was looking forward to ringing that bell.  The doors opened and off we went.

Well, today this lady came into the waiting room alone.  I looked around for her husband and figured he must be in treatment at the moment.  She came directly over to me and sat next to me.  She handed me a Chik Fil-a bag that smelled delicious.  She congratulated me on my final treatment and said hers was on the 18th.  I was at a loss for words.  Not only because she remembered my last day and had gone thru the trouble to bring me something to celebrate it, but also because she did not look like a patient at all.  She literally glowed with life.

I thanked her and asked her about her treatment.  She had no stickers because she was there for a tumor near her brain/pituitary gland.  It was a recurrence and inoperable.  She was hopeful that radiation would do the trick.  Just then my tech came to take me to the doc.  I barely had time to give her a hug and wish her luck.  Hopefully, I would see her again on my way out and get her name.

In the patient waiting room I opened the bag and discovered a card was included with the breakfast.  Her hand written note put a tear to my eye.  She told me that I inspired HER with my calm and the “you got this” look about me.  She told me that her family prayed for me – a total stranger.  I was so touched.  I was humbled again at how God uses people to touch others.  I wanted to tell her that if I had that look about me -it was ALL because I know that GOD has “got this.”  I wanted to tell her I thought SHE was amazing for reaching out and that SHE inspired me to be more outgoing with my faith.

But alas, I did not see her again.  I take solace knowing that she is a Christian woman and I will see her again some day -hopefully a LONG time from now.  I will pass along the pamphlet she included in the card that contained Bible verses to someone else I encounter who may need the knowledge we already have and cling to.

It really was the perfect ending to this chapter.  Thank you Efee!

On the way out of the clinic I got a call from the clinical trial nurse who received my information from my oncologist.  She will be sending me more information on the trial and a consent form to sign.  I’ll explain all that in my next post.

Tonight I celebrate!  And I need to put some lotion on the areas under the stickers I took off.  Yeah -yeah…I know….

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Cancer induced losses

8 unexpected losses I experienced due to breast cancer…

After hearing that “you’ve got cancer” diagnosis, your mind spirals immediately to the potential loss of your life.  Of course no one likes to talk about that or even THINK about it, but anyone whose heard those fateful words knows that it’s something we all have to consider then figure out how to overcome.

But there were numerous other unexpected losses that no one prepared me for.  If you are a newly diagnosed patient it may be helpful to know what potentially lies ahead so you can be ready and even take measures to avoid if possible.  This is by no means an all inclusive list.  I encourage my cancer sisters to post their own losses in the comments.

Loss of sleep…

Of course after you hear the news that you have cancer, there is usually an immediate loss of sleep as your mind goes into overdrive trying to digest it all, learn about treatments, find doctors, inform loved ones…etc.  This will eventually die down as your diagnosis becomes your “new normal”.  What I wasn’t expecting was how chemo would disrupt my sleep cycle, how radiation would make me tired and nap during the day -thus making sleep at night harder to find, or how chemo-induced menopause would give me night sweats so badly that I would wake several times a night drenched and kicking off my covers in the dead of winter.

Loss of hair…

Everyone is well aware that most ladies lose their hair during chemo.  I was prepared for that.  What I wasn’t anticipating was losing ALL the hair on my body!  I mean ALL.  The upside to this was time saved not having to shave my legs or pits and that I now know what having a Brazilian is like without suffering the mind blowing pain of GETTING that wax job.  The downside was losing my eyelashes and brows.  I never realized that your eye lids tend to stick together when you blink without lashes or that lashes aren’t there to look pretty but to keep dust and stuff out of your eyes -which happens WAY more often than you think.  Thankfully, all this hair does come back so don’t throw out all your razors just yet.  And learning to strategically apply makeup can cover up the facial hair losses.

Loss of self esteem…

As a result of the above loss, many women experience a serious loss of self esteem as well.  There were days during chemo that I couldn’t even bear to look at myself in the mirror.  Sure, everyone will tell you that you shouldn’t be so down on yourself and that the hair loss is temporary but I think the majority of my cancer sisters will agree that knowing this and feeling this are two different things.  Even months later, as my hair grows out and I am dealing with that “yucky growing out stage” I don’t feel very attractive.  Losing one’s breasts is also a major deal for many of us too.  They are a huge part of our femininity and most women’s clothes are designed to accentuate our bosoms.  Its hard to lose those curves.  It’s hard to look at ugly scars.  Many of us lose our confidence as well since our looks are simply a big part of who we are.  Right or wrong -it is what it is.

Loss of appetite/ taste buds…

Having no previous experience with chemo, the loss of taste buds was something that was completely unexpected for me.  Sure, most people have heard horror stories about how chemo patients spend hours vomiting after treatment.  This never once happened to me.  The meds that go along with chemo today are very good at controlling potential side effects.  Some people do experience nausea nonetheless.  But the chemo itself will destroy some of your taste buds making food seem unappealing and taste differently.  Take heart!  They DO come back and sucking on ice chips during chemo will help to protect them.

Loss of modesty…

I used to be called a prude back in the day.  Now I don’t think twice before whipping my shirt off in front of people -males included.  After having numerous male doctors stare at, draw on and cut into my chest, I lost any sense of modesty I had about my upper body.  losing my breasts made my chest look like a mangled mess of skin – no longer something feminine at all.  Even after the reconstruction, the loss of sensation in the new boobs gives me a surreal feeling -like they aren’t even mine.  And since they are the work of a physician and not my God-given sweater puppies, I usually don’t have a problem showing them to people -as long as there is a medical reason anyway.  No Girls Gone Wild for me!

Loss of memory…

Anyone who has gone through chemo will tell you that chemo brain is a real thing… if they can remember what it was like.  Chemo’s job is to kill off fast growing cells.  This is why things like hair, nails and taste buds are affected.  Brain cells are also affected -especially the short term memory ones.  I was in a meeting at a cancer support group once where we went around the room introducing ourselves.  By the time it was my turn -I had already forgotten the first 4 ladies’ names.  When I said so, they all laughed in solidarity and we decided that name tags were in order from then on.  I have forgotten about food on the stove, conversations I had with people the day before and the reason I walked in to a room.  It’s harder for me to pull up memories from the past or even words I used to know to describe things.  Granted some of this is just indicative of getting older, but it became more pronounced during and after chemo.  It’s gotten a little better months later, but some ladies tell me they STILL suffer this side effect years later.

Loss of money…

Medical bills.  Need I say more?  In addition to that obvious pocketbook drain, I wasn’t prepared for the other expenses incurred after my diagnosis.  Things like gas to drive the myriad of doctor appointments and treatments, wigs and other head coverings, supplements and other alternative treatments are extra expenses that insurance doesn’t cover.  For many, a change in diet also puts a strain on the budget.  Eating clean isn’t cheap!  You may need to buy new clothes due to weight loss or gain (depending on treatments and diet changes) or as a result of your changing chest size.  Thankfully, I have a wonderful support group that helped me with these unexpected expenses.  Try not to stress out about the money thing.  Like becoming a new parent, you find a way to work it out as you go.

Loss of time…

Of course the first thing a newly diagnosed cancer patient thinks about is the potentially shortened lifespan.  But once you deal with that and realize that many cancers are very beatable these days, you will find that you now have to deal with the reality that you will still lose time out of your life.  Hours lost due to treatments, doctor appointments, travel time, time in surgery, recovery time, extra naps and even time standing in a room trying to remember what brought you there.  I’ve lost time that I could’ve spent vacationing or visiting family out of town.  They say that time lost is something you can never recover but before this post starts to get you down, let’s think about the things you can GAIN after diagnosis…

Many of us never realized just how many people care about us until you “get sick.”  I was astounded at the outpouring of love, support and prayers from people as my cancer news spread.  Some from people I would never have expected.

I also gained many new friends.  The solidarity from my cancer sisters is precious.  They have helped me get through these tough times, given me advice and hope for my future.  Be sure to join support groups -you will be glad you did!

I gained all sorts of new knowledge as a result of this diagnosis and a new appreciation for life.  I gained a stronger faith and the realization that I can use this disease to help others in numerous different ways.

But most importantly, I gained the realization and acceptance that all the above losses were lessons to me.  They were (are) things to get though that made me a stronger person.  That taught me how precious each day was.  Things that gave me perspective and grew me as a person.  Not all losses are bad.  We will ALL lose our lives some day.  It’s inevitable.  But not all of us are given the opportunity to gain an appreciation of each morning we wake up or the time to go repair torn relationships or make peace with God.

Life is what you make of it.  Pay attention to your own losses and gains.  You might find a way to make peace with your diagnosis too.

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