Kicking cancer's ass - day 1809

One of the singular most important people in my life was born on this day.  

Almost thirty-four years ago exactly, I met Trudy for the first time.  We sat close to each other in homeroom (alphabetically, only 1 person between us) and on that first day in seventh grade she became my best friend forever.

Trudy was the person I could always count on, my partner in crime, the little voice in my head, the definition of a true friend.  A lot of people use the term BFF about people in their lives, but for me, that's what she was.  It didn't matter if we saw each other every day or every other year.... we could pick up right where we left off as if nothing had changed.  Over the years, through moves and relationships, illness and parenthood, many friends have come and gone.  I have other friends in my life, good friends, and so did she.  But she was my BFF.

You know the friend who knows all of your secrets, and loves you anyway?  The one who skips school with you to drive to Wurtsboro for breakfast?  The one who is always up for a concert, a road trip or a midnight hamburger at the diner?  For me, that was Trudy.  

For most of our adult lives we have celebrated birthdays separately.  I can't even remember the last time we were together for my birthday or hers.  But we never failed to send cards and gifts, and spend several hours on the phone on each other's special day.  Trudy would have been 46 years old today.

Ever since I was a twelve year old seventh grader, Trude has been a part of my life.  We shared joys and heartaches, pizza and chocolate milkshakes.  We passed notes in school and even had our own little "language" like young girls do.  So many people knew and loved her, and rightfully so.  But for me, Trudy was the sister of my heart.

A picture is worth a thousand words.  That's Trudy on the left, me on the right.  She was a redhead, I'm a brunette.  We both had cancer, and didn't have to fight it alone.  I never wanted to share that with anyone, and I hate so much that cancer is what took her from me.  But Trudy showed us all how to fight, how to persevere, and how to accept fate with dignity.

I miss her every day.

Happy Birthday BAH.  I hope you're having some NY pizza, Pepsi, Reeses Cups and Jolly Cow in heaven.  💛

Kicking cancer's ass - day 1808

As a spinoff from my post the other day, not only is August bipolar for me, this WEEK in August is bipolar.

This week the world celebrates three of my favorite things:

Today, August 9th, my mom will celebrate her hubby's birthday with him.  He is a warm, caring, hardworking man and we wish him a happy day!

Today, August 9th, we remember Hubby's mom Floy, as she passed away on this day eight years ago.  She was a warm, caring, selfless woman who gave the term "mother-in-law" a good name. 

Life is full of ups and downs.... I know that.... I just wish there weren't so many ups and downs at the same time!

Kicking cancer's ass - day 1806

August is a strange month for me.

A lot of my favorite people were born in August.

My mom on the 5th
My stepdad on the 9th
My BFF on the 10th (that's going to be sad this year)
My brother on the 23rd
My BFF's daughter on the 28th

Three years ago my mom and her guy tied the knot on August 1st, which makes that a happy day.  But two years prior to that, on August 1st, I was diagnosed with cancer, which makes that a decidedly UNHAPPY day.

Four years ago (last week) my dad's life changed forever.  A heart attack and stroke that were both serious enough that we weren't sure he would even live....  While August is a milestone month for him now, too (because he's alive and relatively well four years later) it's also an anniversary of one of the worst days of my life.  Getting the call at work, hearing the doctor tell me I might want to "make plans", packing for a trip not knowing if I would need funeral clothes... Ugh.

Eight years ago this week, on 8/9/10, Hubby lost his mom to cancer.  My kids lost their grandmother.  I lost a mother-in-law I was lucky to have.  A giving, patient, loving woman was taken from our world too soon.

So I'm not quite sure how I feel about August.  Lots of good and lots of bad.... makes it a bipolar month for me!

I have decided that August will just be a month where I exist until September.  

September has a lot to offer:  cooler temperatures (hopefully), football, marching band, fall softball, etc.  When asked if she's ready for school, K always answers "Yes, but not getting up early".  I hear ya sister.  My kids definitely are ready for some kind of routine and a social outlet that doesn't come with an LCD screen, but my 6:15am Mon-Fri alarm is not my friend.

Kicking cancer's ass - day 1800

A lot of people who have not been directly affected by cancer often ask "So are you in remission?"

None of my doctors use that term.  None of my friends who've had cancer use that term.  Unless you constantly have scans, xrays and blood tests, there's absolutely no way to know you are 100% cancer-free.  How can you possibly know that there's not one teeny, tiny evil cancer cell somewhere in your body just waiting to wreak havoc?  You can't.

I've never said I'm cancer-free.  How can I determine when I beat cancer?  Do I count from my last chemo treatment?  Or the end of radiation?  Or after any of my more than a handful of cancer-related surgeries?  I have to take Tamoxifen, which is considered cancer treatment, for ten years.  So am I not cancer-free until after that?

What we do say is we are "dancing with NED".  You are wondering who the heck this Ned guy is?  "No Evidence of Disease".  Basically dancing with NED means no news is good news.  So what I'm doing, what I've been doing for over 1800 days, is surviving... because every day I'm alive and well and dancing with NED is a day that I've kicked cancer's ass.

The day I was diagnosed with breast cancer, August 1, 2013, I became a cancer survivor.

Over the last 1796 days (I started counting on the day of my first chemo treatment) I have written some impressive blog posts (yes, if I do say so myself!).  But none have been more meaningful to me than my "Survivor" posts:

One Year
Two Years
Three Years
Four Years

No matter how close you are to a person who has cancer, no matter how much you read or watch or listen about cancer, unless you've HAD cancer, you just don't know.  You don't know that gut-wrenching feeling of hearing the three dreaded words:  you have cancer.  You don't know the horrifying feeling of being forty years old and wondering if you are going to die.  You don't know the devastating feeling of telling your children you have cancer.

If you've never had to undergo chemotherapy, you just don't know.  You don't know the feeling of nurses having to wear gloves because the medicine they are giving you is so toxic.  You don't know the feeling of being so sick you can't even hold your head up.  You don't know the feeling of having to shave your head because your hair is falling out in clumps.  You don't know the feeling of eating the same stupid thing for days or weeks because it's the only thing you can keep down.  You don't know the feeling of having mouth sores and a nasty taste in your mouth 24/7.  You don't know the pain, the nausea....the overwhelming SICKNESS.  

If you've never had radiation, you just don't know.  You don't know the loneliness of being isolated in that radiation room every day for weeks.  You don't know the indignity of lying there, exposed, day after day after day.  You don't know the hassle of going to the cancer center every single day for six weeks.  You don't know the bone-crushing fatigue that makes you feel like you don't even have the energy to brush your teeth.  You don't know the worse than a sunburn shade of red that radiation turns your skin.

If you've never had cancer surgery, you just don't know.  You don't know the feeling of going into an operating room knowing they are going to be removing important parts of your body.  You don't know the pain and discomfort of a bilateral mastectomy, or a hysterectomy.  You certainly don't know how incredibly difficult the recovery is for a ten hour reconstruction surgery that affects not one or two, but four different areas of your body.  You don't know how much more difficult it is to bounce back after four, five, six, SEVEN surgeries.

I can talk about it all day long, but unless you've been through it, you just don't know.

What I have been through is nothing unique.  There are millions of cancer patients and cancer survivors all over the world.  Some have it easier than me, some have had a more difficult journey than I did.  But what I have been through is unique TO ME.  And I'm pretty damn proud of myself.

For the past five years I have been on an emotional roller coaster and an uphill physical battle.  It's not over, and it may never be over.  I'm not the same person I was before.  But I'm still here.  I'm happy & healthy despite the devastating effects of having cancer.  I'm alive and well.... still kicking ass and taking names...five years later.  

Kicking cancer's ass - day 1776

Today is this guy's birthday:

Eighteen years ago today Hubby and I spent our first "date" together at the beach.  It was the first time he'd ever seen the ocean.  I always used to tease him that he needed me in his life to broaden his horizons.  That's probably true.  But I also needed him...for everything.  Hubby is a good man, a devoted husband and a loving & supportive father.  

According to the birthday ninja, his birthday numbers 7, 8 and 1962 reveal that his Life Path number is 6. It represents justice, nurturing and responsibility. 

I would say that is pretty accurate.  Hubby is one of the most responsible, most loyal, most honest people I know.  He always does the right thing, even when it's not the easy thing.  He would give the clothes off his back for someone who needed them, and he never asks for anything.

Unfortunately his birthday lunch was interrupted by disappointing news.  It's getting to be old hat for us, but I'm really tired of people treating us poorly.  

I'm always upset when someone is dishonest or disloyal, because honesty and loyalty are two very important traits to us.  But it pisses me off even more when something like this happens and ruins Hubby's birthday.  He always puts himself last and never expects anything, so today, his birthday, I tried to make him feel a little special.  Considering a phone call at lunch put him in a lousy mood for the rest of the day, and a severe dizzy spell made him have to eat his ice cream cake lying down, I don't think I had any chance of succeeding in making sure he enjoyed his birthday.

All I can say is:  

That's all.  No drama.  No sob story.  We can't control what other people do, even when it affects us.  All we can do is keep on keeping on.  We treat other people how we would like to be treated, even though it rarely works out that way in reverse.  I just have one word:  karma.

Hubby....I know you are angry.  I know you are frustrated with the situation, and sick to death of people.  Just remember - this smile is why we do what we do.

I would put up with anything, work from the ground up as many times as I have to, in order to keep this girl happy doing what she loves.  

I know it wasn't the best one ever, but Happy Birthday Hubby.  My world is a better place because you are in it.  I love you.

Kicking cancer's ass - day 1764

Today I spent some time in the Nuclear Medicine department at UT Southwestern.  My day started out with all sorts of fun by having to wake up at 3:15am.  That is an awful time to be awake for anything, let alone a three hour drive.  J and I hit the road at 4am and even with Dallas morning traffic we arrived 30 minutes early.   

I knew I was having some type of nuclear scan, and if it was like the one I'd had previously, they would put in an IV and give me an injection of nuclear stuff, and two hours later I would have a scan.

WRONG.

The tech that took me back to the imaging room asked if I had had lymphoscintigraphy before.  Nope.
Then she asked if I knew what it was.  Nope again.
Another tech entered the room and they proceeded to explain what was going to happen.

Let the fun begin.

I sat down on the little bed and they put a table cart in front of me.  I was instructed to put my hands flat on the table and stay as still as possible.  Like this:

(See the lovely difference lymphedema has made?  My normal right hand and the elephant hand on the left.... ugh)

Anyway.... I digress.
The two nice female techs explained that they were going to give me injections of the radioactive dye that would show the blood flow in my hands and arms for the scan. 
Oh, and those injections would be done at the same time... BETWEEN MY FINGERS!!!!!  😱😱

Let me tell you, that is as unpleasant as it sounds.  The prick of the needles wasn't that bad because those needles are tiny.... but that radioactive shit feels like FIRE going in.  (Pardon my language)

I kept my cool and didn't flinch or make a sound.  The techs were impressed. 
"Wow you are strong!  Not even a wince."

I've been through much worse.... but still.... Jesus, that hurt.

I then spent the next two hours with this machine:

I don't know if the dye wasn't behaving or my circulation was too slow (hello - it was freezing in there!), but they kept having to redo images (each one took 5 minutes), wait 5-10 minutes in between, and even had me get up and walk around, stretching my arms before they tried again. 

Finally they got all that was needed, and I waited another twenty minutes for the radiologist to confirm that before they let me go.  Getting up at 3:30am to spend six hours in the car and three hours in a waiting room earned my teenager lunch at Cheesecake Factory (and we even brought dessert for Hubby) before heading home.

Dr C will review my test results and then a decision will be made on what, if any, surgery I'll be able to have for my lymphedema.  I'm not really sure what he's looking for or what a "good" result is, but whatever it is, I'm praying for it.

I was asleep on the couch by 3pm.

Kicking cancer's ass - day 1762

Almost exactly one year ago I posted about the latest gift I'd received from having cancer:  lymphedema.

Kicking cancer's ass - Day 1392

That was on June 22, 2017.  Today, June 24, 2018, a year later I am still dealing with this.  I always will be dealing with this.  Lymphedema is a lifelong problem once it develops.  Fantastic, huh?

It has been very frustrating for me because nothing seems to help.  I have three different compression sleeves and gloves (different sizes and compression levels) and they don't help.  In fact, the custom sleeve and glove make my wrist skinny, but my hand and the rest of my arm blow up.  Obviously something isn't right.  I do have supplies to bandage (wrap) my arm.  But that's uncomfortable, time-consuming and did I mention uncomfortable?  And it doesn't really help.  I also have a pump that we are paying a bunch of money for that is a pain to put on and it takes an hour to run through the cycle.  Since my restless legs are worse than ever, it's difficult to keep my body still for an entire hour.

Basically lymphedema is a pain in the ass...or in my case, the arm.  It's painful and annoying, unresponsive to treatment, and all of those treatments are expensive.

There is a little bit of hope.  Last week I met with a plastic surgeon who specializes in microsurgery for lymphedema.  And when I say micro, I mean MICRO.  We are talking lymph vessels that are less than a millimeter in diameter, and stitches with thread smaller than a human hair.

There are two types of surgery offered, depending on the patient.

• Vascularized lymph node transfer surgery: Surgeons transfer working lymph nodes from another part of the body, typically the upper groin or lower abdomen, to the damaged site.
• Lymphaticovenular bypass surgery: Surgeons perform this surgery by shunting, or moving, fluid from several dilated lymphatics in the affected limb to adjacent venules (tiny veins) to reduce pressure.

Dr. C believes I'm a good candidate for the second surgery.  He will make several small incisions from my hand to my upper arm and in those areas he will connect my lymphatic system to tiny veins to re-route the fluid that has nowhere to go.  

It's not a cure-all.  There is no cure for lymphedema.  But if this surgery is successful, it can reduce my swelling, hopefully significantly.  First things first...

I am having lymphoscintigraphy (https://www.radiologyinfo.org/en/info.cfm?pg=lympho) on Tuesday. Basically it's a nuclear scan to evaluate the flow of the lymph system in my bad arm. It's the first step in hopefully getting me some relief.  Once the surgeon reviews this scan he will determine which surgery, if any, I will benefit from.

I'm not thrilled with yet another surgery, but I'm even less thrilled with living the rest of my life with this uncomfortable and unsightly condition.  My arm aches constantly, hurts sometimes and makes me self-conscious all of the time.  I know it could be worse.  Believe me, I know there are worse things I could be dealing with.  But everyone deserves a little pity party now and then, and if I can educate people in the process, I'll step right up on my soapbox.  

Cancer truly is the gift that keeps on giving. 
But like the shirt I'm wearing today says, life is good! 

Kicking cancer's ass - day 1746

After what seems like months and months of nothing really to talk about, I have news!

First.... I had my six month check ups with my oncologist and my surgeon.  All is good, come back in another six months.  Yay!

Second....I had a follow-up CT scan to recheck some lung nodules that were on my scan in September.  Nothing new on this one and everything is stable!  Yay!

Third...I met a new doctor today.  I took the first step towards doing something about my lymphedema.  I'm OVER it.  It's ugly.  It's uncomfortable.  It's not responding to anything I do for it.  Sometimes it hurts.  It puts me at a greater risk of an infection, and developing serious complications from an infection.  So... enough is enough.

Fourth...Today I had an MRI of my abdomen to screen for pancreatic cancer.  I'm supposed to have this every year, and as long as nothing shows up, I don't have to see that particular doctor.  I won't know results until next week, but it feels good to have that done.

Hubby and I met with a plastic surgeon who specializes in microsurgery for lymphedema.  And when I say micro, I mean MICRO!  We're talking performing surgery on lymph vessels less than half a millimeter wide and using stitches thinner than a strand of hair.  Better him than me!

Anyway, after measuring both arms, the nurse quipped, "Well, in case you couldn't tell, your arms are two different sizes."  ha   No kidding.

First up will be a test to see where the lymph pathways in my hands and arms lead.... if anywhere.  This is called radionuclide imaging of the lymphatic system.  Basically I'll be injected with radioactive dye and then scanned to see where it goes and highlighting blockages.  

After that, I'll meet with Dr C again to discuss a plan.  He thinks I'll be a candidate for "lymphaticovenular bypass surgery".... during which he'd redirect my lymph fluid from the blocked areas to open vessels (veins).  It would be a 5-6 hour surgery, overnight stay, and then a month of babying my arm (basically keeping it elevated and not using it at all).

So.... more tests.  Probably more surgery.  Definitely more trips to Dallas.

Not a fan of any of those.  BUT.... I have hope.  I spoke with a friend of a friend who had this done, and she said it has been LIFE CHANGING for her.  

I have to stay realistic.  It's not a cure.  There is no cure.  And the results vary.... from zero improvement to about a 30% reduction.  I'll take it.  

This surgeon is in the same office as Dr T who did all of my reconstruction and remains one of my favorite doctors.  I have ultimate confidence in the team at UT Southwestern, so I'm going to go forward with this and see what kind of plan we can come up with.  

The following is a post from last June when I first went down the road of treating lymphedema.  Not much has changed.... except I am not settling for suffering with this any longer if I can help it.  

Fingers crossed!

Do you know what lymphedema is? 
Before cancer invaded my world, I had no clue.

Let me educate you.

Lymphedema is swelling in an arm or leg caused by a lymphatic system blockage.
The condition is caused by a blockage in the lymphatic system, part of the immune and circulatory systems. Lymphedema is most commonly caused by lymph node removal or damage due to cancer treatment.

The main symptom is swelling in an arm or leg that may be accompanied by pain or discomfort.

Since I had tons of lymph nodes removed during my initial surgery, my lymphatic system on that side is compromised.  With no lymph nodes, the lymph fluid has nowhere to go, and it can build up.

I've tried to be diligent about preventing it to the best of my ability.  I wear my compression sleeve when exercising or out in the heat, on an airplane or if I feel the tiniest bit of swelling.  I make sure to always get my blood pressure taken on my right arm, and avoid needles (shots or iv) on the left side.  In three and a half years I haven't really had any issues.

Cancer really is the gift that keeps on giving.  Aside from the fear that every ache and pain, cough or rash could be cancer, there is also the possibility of a surprise lymphedema diagnosis years later!

I saw a lymphedema specialist Monday and she taped my arm until the wrapping supplies came in.  Well...... they came in and I saw her again today.  Lucky me.

I have five, count them, FIVE layers of stocking, padding and bandages on my arm.  And I get to do this every night for the foreseeable future.  BLAH.  I'm lucky that my therapist took pity on me.  Normally a patient would wear this 23 hours a day.  Since my lymphedema isn't extreme and is mostly localized in my forearm and hand, I can get away with wrapping at night and wearing my sleeve during the day. 

It's a very good thing that I've never broken a bone.  I would NOT be a good patient if I had to wear a cast.  My son had to unclasp my necklace tonight because my arm wouldn't bend far enough to reach it.  I had to stretch a rubber glove over my hand to cook dinner.  I have an ITCH in the crook of my elbow.... that I can't get to!  Oh, and I live in Texas and it's SUMMER.

We are leaving tomorrow for a road trip including a softball tournament, visits to two different friends in two different states, and ending up in New York to see my parents.  I will be traveling with my little bag of wrapping supplies and hope between me and my son we can figure out how to duplicate this crazy contraption on my arm.... every night.

I know there are much worse things I could be dealing with.  It's uncomfortable and restrictive and annoying..... but not life threatening.  I'm not sick, I'm just swollen and achy and pissed off that this happened.  

Just goes to show you you're never really "in the clear" from anything cancer-related.

I guess I get to add another color awareness ribbon to my profile.  I should go jewelry shopping.  😄