Friday, January 19, 2018

If I Had Known Then What I Know Now....

It's still dark outside when my alarm clock sounds at 4:00am.  It's earlier than I usually awaken, but in order to fit as many appointments in one day as possible, these days start early.  I try to fit as many appointments in one day as possible so as to use as little leave at work as I can.  Today I was lucky enough to have been able to schedule five appointments, which is unusual.  I am completely exhausted, but must get up and be ready to leave the house at 5:00.  I packed my bag last night (snacks, phone charger, knitting project, ipad for books, games, puzzles), so after a quick shower and make-up, I'm ready.  No coffee or jewelry until after the CT scans.  My watch, wedding rings, and medical id bracelet are tucked safely in my bag, along with the necklace and earring set I usually wear to my medical appointments.  Yes, there is a specific set that I wear to every appointment.  I call it my armor.  It's a Touchstone Crystal by Swavorski set, called the Guardian.  It's named after Wonder Woman, and was gifted to me by some very sweet friends I've known since high school.  It along with the shawl I wear (yarn gifted to me by a coworker and his wife; shawl I knitted through chemo and surgery recovery) and some other items, give me strength.  There will be a future blog post about things and their symbolism.

5:22 am.  I'm sitting in the van that my husband so thoughtfully warmed up.  I'm feeling nice and toasty in here while he loads my walker in.  As I watch Benji in  the window watching us, it hits me, what the day is (explanation below).  Tears start welling up, but I don't know if it's the sadness of remembering what the day is, the thought of all of the appointments and long day ahead, or sheer exhaustion.  Probably a combination of all.

Driving through the city before the sun comes up.  The monuments look impressive all lit up with the dark backdrop of the sky.

6:07am. We had good traffic and are already sitting at the light on the Whitehurst Freeway to turn left onto Canal Road.   The Exorcist steps look eerie in the dark.  This light is my cue to apply Lidocaine to my port site.  Lidocaine is a numbing creme.  I apply it about an hour before my port will be accessed to make it less painful.  Sometimes it works, sometimes it doesn't.

my view of the CT scanner
6:30 am, about an hour early for my appointment.  I'm sitting in the Radiology waiting room.  Today I have two CT scans scheduled.  One of my neck, so we hopefully can see why I have trouble swallowing.  The second is my every-three-month scan of chest/abdomen/pelvis.  While I wait, I remember distinctly the first time I sat here.  It was after the breast cancer diagnosis.  It was my first CT scan ever.  It was the result of that first CT scan that told us that the cancer was also in my left lung, and led to a lung biopsy.  I was knitting at the first appointment.  I am knitting now.  Knitting is a great stress reliever.  The repetition of the pattern; the rhythmic flow of the needles.  I sit and wait for them to bring me back to the holding room where I will drink the contrast (it usually tastes like lukewarm lemonade; today it's lukewarm fruit punch) and wait for them to bring me to the scan room.  There a nurse from Interventional Radiology will come and access my port so that they can inject the IV contrast.  Then they will perform the actual test.  The waiting is longer than the test itself.

They were able to take me back early.  The nurse came to  access my port, but the port gave us some trouble, with no blood return.  They ended up putting an IV in my right wrist.  IV will stay in, and my port will stay accessed so that one of them can be used for treatment this afternoon.


8:00am The CT scans are done, and we are now in the Cardiac testing department, waiting for my echo-cardiogram.  I have one of these done every three months to monitor my heart.  Herceptin, one of the medications I receive via IV every three weeks, is known to cause heart problems.  So, echo-cardiograms are done to monitor my heart.

9:15am  Laying on the bed still hooked up the the machine while the tech goes out and shows the images to the radiologist.  He comes back in to say that some of the images aren't clear, so they want to inject a chemical to enhance the images.  Good thing I still have the IV in.  As I type this, he is out of the room mixing the chemicals.  I will rest while I wait, and more than likely doze off before he gets back. It's been a long day already.

10:30am.  Just finished a late breakfast of Chick-fil-a in the Lombardi Cancer Center lobby (one of the few waiting rooms that has comfortable seats).  Now I'll go check in an hour and a half before my scheduled appointment,  and settle in with my knitting, coffee, and the hope that they have a light schedule today and can take me early while the harpist plays relaxing music.

As I sit through my appointments today, I am so very thankful to have my husband by my side.
No, he doesn't come to every appointment anymore.  He just can't; there are more appointment days than he has leave available.  He does come to the most stressful ones.  Today is stressful because not only is it five appointments and will be exhausting, but today is the 10th anniversary of my sister's death.  Her cause of death?  Cervical cancer.  Last Friday was the 13th anniversary of my mother's death (complications from the stroke that paralyzed her on her right side).  Next Friday will be the 18th anniversary of my father's death (laryngeal cancer).  Yes, I know -- January has not been good to us.  I watched the three of them, in turn, suffer with their illnesses, then die.

As I sit through my appointments today, I can't help but to reflect on the kind of caregiver I was to them.

11:45am Called back to the exam room for my oncology appointment.  They couldn't take me very early because apparently I was her first appointment of the day, at noon.  While I waited and the harpist was playing, I dozed off with my head on my husband's shoulder.  He is my rock.

1:20pm.  Done with oncology appointment.   It went well.  The results of the chest/abdomen/pelvic CT scan came through already.  "No evidence of metastatic disease" -- what ever cancer patient wants to hear, always.  The CT of the neck was still being read, so I don't have that result.  The echo-cardiogram report did come back, and it looks good.  So, so glad.

Now upstairs at the 2nd floor infusion center.  My port is still not behaving properly.  The nurse de-accessed it and re-accessed it, which is a bit painful.  Still no blood return.  Now, she will TPA it -- she will inject a medicine into the port to hopefully dissolve any crystals that may have formed, blocking it.  While that medicine is working on my port, she has pushed the Zofran pre-med into the IV in my wrist, then hooked up Herceptin, then Perjeta.


As I sit in the chair in the infusion center, I nap, and I contemplate.  As the lifesaving medication drips into my veins; as my husband, my rock, sits at my side, I contemplate.  As I listen to the person in the next bay getting sick, as I hear the "last chemo" bell ring, as I hear the nurses rush back and forth, I contemplate.  As I feel a little queasy myself, despite being given the pre-med of Zofran, I contemplate.

If I knew then what I know now, I would have been a much better caregiver. 

I would have known to just sit and listen, and just be, with them. 

I would have known to not leave my sister alone at her house that day after she ordered me to go when all she could do was cry and say, "It just hurts so much."

I would have known to have more patience after I asked my mother three times what she wanted for lunch and she said to wait until after I fed myself and the boys, then as soon as I sat down she asked for hers.  I would have know to get hers first regardless. Then I wouldn't have made her cry when I fussed at her for it.  I would have made it a point to sit and watch her favorite tv shows with her, even if I wanted to sit in another room and watch something else.

I would have known to spend more time with my father.  Instead of sitting at his hospital bedside reading silently, I would have found a book that might interest him and read aloud to him.  I would have gone to his house every single Sunday during football season to cheer on the Redskins with him.

If I had known how draining it is to schedule and keep appointments straight, I would have taken over that task from them.

If I had known how draining is is to keep track of all of the medical bills, to compare them to the explanation of benefits from the insurance company, to fix mistakes that are inevitable, I would have offered to take over that task from them.

If I had known how draining it was to just get through the day, I would have prepared more meals for them; would have helped them with housework more; would have helped them with their bill paying; would have helped them more with the day to day tasks that the rest of the world takes for granted will get done.

If I had known then what I know now, I would have been a much better caregiver to them.

What can you take from this?  Think of your family members and close friends who may be going through a rough time.  You may have to think hard, because many people are going through things the rest of us don't see.  Be there for them.  Take a meal to them unexpectedly.  Take them out for a cup of coffee, or a glass of wine.  Visit with them; do a puzzle with them, play a board game or a game of cards with them.  Just be with them.  They will appreciate it.  I know I do.

4:00pm(ish).  We finally have blood return!  My nurse and I were a little loud with our celebration.    Finally, time to go home.  Jimmy and I slowly make out way out and are on the road at 4:20.

6:20pm  Home now.  Typical Friday evening rush hour. 20 year old is at work until 8:30; 16 year old is asleep (because that's what teenagers do); Jimmy and I are too exhausted to even think about cooking anything, so off to Wawa for paninis he goes while I put the finishing touches on this blog post. As exhausting as the day was, the good news is that because I was able to fit all five appointments in one day, I only had to use one day of leave for work, instead of maybe two or three. So, there's that.

It's been a long day, for both me and my husband.  I am exhausted, and I know he is, too.  Care-giving is hard work.  Sitting at the hospital all day with your loved one is tiring.  Letting me lean on him (literally and figuratively) is tiring.  Time for sleep now....

Thursday, January 11, 2018

My Story, as of January 2018

I have quite a few new readers of this blog, so I thought I would make an entry with a summary of my story to date.

I was diagnosed at age 50 with Stage IV breast cancer.  Stage IV means that it has moved from the spot of origin to other organs.  Mine is in my left lung.  It's not lung cancer; it's breast cancer in my lung.  I had the misconception that I would have chemo, maybe radiation, maybe surgery, then get back to normal.  Boy, was I wrong.  I had seven rounds of chemo, the last one of which put me in the hospital for about four days.  That's when my oncologist and my surgeon made the decision that surgery was the best option at that point.  My first CT scan after surgery showed No Evidence of Active Disease.  This means that whatever they can see in my lung, they're not sure what it is.  It could be scar tissue, it could be cancer, it could be really anything.  So, I have CT scans once every three months to monitor.  They can not say that I am cancer free.  They'll never be able to say that.  The cancer is there, just laying dormant at the moment.

My current course of treatment, to keep the cancer at bay, is as follows:  Every three weeks, I have infusions (medicine administered via IV) of Herceptin and Perjeta.  If you're interested, you can find out more out these medications and what they do here:  HerceptinPerjeta.  I also take an oral medication daily, Tamoxifen.  These medications cause a myriad of side effects.  You may have seen me use a walker, a cane, or a wheelchair.  Perjeta is causing balance issues.  I lose my balance very easily.  I also tire quickly, thanks to Tamoxifen.  Herceptin is known to cause heart problems, which is why I have echocardiograms once every three months.  There are other side effects that I deal with, but some things I think you don't want to know about.  😏

Cancer affects more than just the body.  Look through the archives here and read the "The Cost of Cancer" entry.  It's not just a monetary cost.  Cancer takes a toll ... on the person who has it, and the people who are close to that person.

A little more about Stage IV cancer:

Stage IV is also known as metastatic, is also known as terminal.  To be blunt, it will kill me.  Please don't respond to that statement with "but you could walk outside and be hit by a bus...."  Yes, that is true, but chances are greater that cancer, or complications from cancer, will kill me.  To go with the bus analogy, the bus has already hit me ... it's now dragging me down the street, hitting every bump it can.

"But you look so good!"

"I thought you were done with treatment."  

"I thought you beat cancer."

No, I'll never beat cancer.  It's not a fight I can win.  But when I die, please don't say that I "lost my battle" against cancer.  It's not a fair fight, and saying I lost the battle implies that I had a choice in the fight.  I have a team of doctors on my side, but eventually the treatment options will run out ... and I will die.  The median life span of a metastatic breast cancer patient is three years.  I was diagnosed in March of 2015, and we don't know how long I had it before I was diagnosed.  You do the math.

You may think I'm being morbid, or insensitive, or [insert your word of choice here], saying it like this, but I think it best to be honest.  The truth is, I will always have cancer.  I will be in treatment for the rest of my life.  This is not something I will "bounce back from".  My condition will continue to deteriorate; it will not get better.  My oncologist has me on the best treatment plan for my type of breast cancer.  Yes, there is more than one.  There are three receptors that they look at.  Mine are all positive.  Knowing if the receptors are positive or negative helps the oncologist decide on an appropriate treatment plan.


This all might be a bit much to digest all at one time.  I've have almost three years to learn about it, and learn to deal with it.  Please, if you have any questions, ask.  I am open about my illness.  With my openness, I hope to spread real cancer awareness, not the "pink ribbon; cancer exists" awareness.  With this blog, I hope to help you to understand what it's like to live with a terminal illness, to help you to be a better caregiver to your loved one with cancer, or any illness for that matter.

A very important thing I've learned through all of this:  everybody has something they are dealing with that we may know nothing about.  Be kind,  always.

One last thing

One thing I ask of you.  After I die, please -- take care of my boys.  💙

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