Friday, December 29, 2017

Terminal Musings -- Last Meal

This may sound morbid to most of you, and you might think I'm a little off my rocker for posting this, but trust me, I've thought about it.  Lots of us have thought about it.

Have you ever thought about what you would want your last meal to be?  I hadn't until I was diagnosed with a terminal disease.  This is actually a question that comes up periodically in the facebook support groups that I am a member of.  We've thought about it.  We've planned the meal in our minds.  If you could plan your last meal, what will it be?  Here's mine:

An appetizer of Stuffed Shrimp from Captain Billy's, along with a Hawaiian Punch (one of the drinks that they're famous for).  The main course will be a Delmonico steak from Hancock Family Farms, cooked outside on the grill, accompanied by potatoes, sliced and fried with onions in a cast iron skillet like my father used to do.  I guess we should throw in some vegetables, too, as long as corn is included.  Since the Hawaiian Punch has been consumed with the appetizer, with the main course I would make a rum & Coke, with the rum from Bluedyer Distilling.  For dessert, I would like an almond/cherry flavored cupcake from Poppyjeans, and a chocolate milkshake from Chick-fil-A.  Did I leave anything out?

I know, this menu just might change as time goes on, but for now, Image result for these are a few of my favorite things clipart

Thursday, December 14, 2017

12/13/2017 Endoscopy

I've been having trouble swallowing.  I've choked on my medication a few times, and on food.  I now take my pills with applesauce (I was using milk, but that stopped working).  I had a swallow test done, which showed some spillage.  Yesterday I had an upper endoscopy.  I arrived at the hospital at 7:00am for the 8:00am procedure.  After I changed into a hospital gown, they put me on a gurney, then a nurse inserted an IV.  After a few minutes, I was wheeled down the hall.  They put an oxygen tube in my nose, then the anesthesiologist put something into my IV.  He said was a numbing agent, because whatever he was giving me next may have a burning sensation.  Then I was asked to turn onto my side, and a nurse put the mouthpiece in.  I rested there waiting for a few minutes, then I was waking up in the recovery room.   Done.  I don't remember the anesthesiologist giving me anything else.  After I got dressed, I waited for the doctor to come in with the results.  She didn't see anything in my throat, so wants me to have a CT scan done of my throat and then follow up with a doctor in the Otolaryngology department.  She also told me that she saw something red in my stomach, so did a biopsy.  What she didn't need to do was to give me pictures of the inside of my throat and my stomach.  Yuck.  😊  So, we'll wait for the results of the biopsy, and combine the throat CT scan with my regular, every-three-month chest/abdomen/pelvis CT scan.  I'll let you know the results when I get them.

I felt fine after I left the hopsital, just still very tired.  I thought I would be fine in a few hours.  I climbed into bed as soon as I got home.  Was it late morning, early afternoon?  I don't remember.  I woke up a few times, was able to eat a little dinner (soft foods, as per instructions), and stayed in bed waking every few hours until my alarm went off this morning.

Now to schedule those tests....

Saturday, September 30, 2017

Breast Cancer Awareness Month

I posted this on my personal facebook page, and it turned out much longer than I intended.  So, I thought I'd copy and paste it here:

Tomorrow marks the beginning of October. Please, no pink hearts by themselves as a status update. It's not spreading awareness, especially when you're supposed to "keep them guessing", and "don't tell the guys". How is that spreading awareness when you're not supposed to say what it means? And - newsflash - guys get breast cancer, too. And face it, we're all aware.

NFL -- You can stop turning everything pink during October. We're aware. The money that you're spending on all that pink stuff can be better spent on research. That goes for the pink firetrucks and police cars I've seen, too.

And please (and this goes for any charitable organization), if you see something out in the stores that has a pink ribbon emblazoned on it, read the fine print. If you want to buy it to give to someone in a show of support, by all means, do. If you want to buy it because it says that a portion of the proceeds go to breast cancer awareness or research, please read the fine print and verify where it actually goes. There are so, so many things in the stores with pink ribbons that the profits go into the business' pocket, not to any reputable cancer agency. And while I'm at it, I'll say this -- even if it is a reputable organization that we've seen out there countless times, take a look at where the money goes. How much goes to awareness (that it not needed anymore)? How much goes to research (which is sorely needed)? How much goes into Nancy Brinker's pocket? If you really want to help, donate to an organization that puts the money towards research. For breast cancer, Metavivor.org is a good one. If you want to help a friend or family member who has cancer, send them gift cards to restaurants, gas stations, grocery stores, a spa for a mani/pedi or massage, maybe even their local medical supply store for things that insurance doesn't cover (a cane, maybe, or a walker/rollator, or maybe a wheelchair carrier that hitches to the back of their vehicle because the insurance company okayed and bought them a wheelchair, but doesn't cover any way to transport it. Or, they can buy puke bags to carry around with them, or handicapped bars for the shower/bathtub. I have a list on my blog of wonderful organizations (Nails & Faces of Joy Spa, who come to you, Cleaning for a Reason, who will provide four house cleanings, Little Pink Houses of Hope, LESLIE'S WEEK, and Ally's Wish, who provide vacations, Do It For The Love, who provides concert tickets and VIP packages, Bob's Boxes, who provides care packages to women undergoing mastectomies). There are so many more organizations out there like the ones I listed -- look for them; support them.

Alternatively, there are plenty of things you can do for your friend that doesn't cost a dime. You can post a selfie with the hashtag #KissThis4MBC. Novartis will donate $10 for each one to Metavivor. You must make the post public so that they can see it. You can do this up until October 13, with is Metastatic Breast Cancer Awareness Day. You can give your friend a ride to treatment, especially if you happen to be going to same way at the same time. You can go sit with your friend at her house with a bottle of wine or a pot of coffee because she's too tired to go out after working all day, and spends the weekends resting. Watch a movie with her. Talk with her. Listen to her. Tell her how your life is going; it doesn't have to be all about cancer.

Wow, that ended up way longer than I intended. I sure hope you stuck with me, as this is very important to me. 113 women are dying every single day from metastatic breast cancer. 113 a day. One day I will be one of those 113. Research for a cure is what's needed, not sorority house type pinkness everywhere. Cancer is not a party, it's not frilly pink cuteness. It's having your breast(s) amputated. It's dealing with side effects of medication even years after chemo is over. It's worrying about if you'll be around for the next milestone in your children's lives. It's feeling inadequate when you can't be the caregiver to your spouse (who has his own medical issues) that you should be. It's taking four times as long to load the dishwasher because you have to rest every few minutes. It's ... it's just so much. If you've stuck with me through this long post, I thank you. Please post a blue heart (blue is my favorite color) or a coffee cup or a wine glass in the comments so that I know this was actually read and not all for naught. Thank you. 💙

Friday, September 22, 2017

The Night I Met Rick Springfield

Background

I was diagnosed at the age of 50 with Stage IV breast cancer.  Stage IV is the same as metastatic, is the same as terminal.  My breast cancer had spread to my left lung.  I underwent seven rounds of chemotherapy, followed by a mastectomy.  Since then, I have been on maintenance treatments -- two medicines via IV once every three weeks, one oral medication daily.  I have routine CT scans, bone scans, echocardiograms, and MRIs to keep an eye on things.  I deal with side effects of these maintenance medications.  I have balance issues, and extreme fatigue, so I use a cane, a walker, or a wheelchair, depending on where I'm going and how pronounced the side effects are at the time.  So you see, the cancer is never out of my mind.  It's always there, looming.  I've come to cherish every minute, to find the joy in all things, to live.

So, when I heard about the Do It For The Love Foundation, I had to check it out.  This wonderful organization provides concert tickets to terminally ill people, as well as children with severe challenges and wounded veterans.  Not only tickets to a live musical performance, but a meet and greet with the artist(s) if possible.  What a wonderful experience.

In the 1980s I was in my teens and early twenties.  80s music is my music.  In addition to listening to Rick Springfield on the radio, we were able to watch him every day at 3:00pm when he appeared on General Hospital as Dr. Noah Drake.  When I saw that he had an upcoming concert nearby, I requested tickets. Do It For The Love was able to obtain the tickets and a meet and greet session!  I was so excited!  Not only was I and my family going to see Rick Springfield and Richard Marx in concert, we were actually going to meet Rick Springfield after the show!


Concert Night

Talk about feeling special!  Our seats were ten rows from the stage.  Ten rows!  After the show, we didn't have to wait long before we were taken to the room where we would meet him.   I had expected a long line of people, and I had expected that when it was our turn, we would say a few words, take a photo, have him sign one or two things, then be on our way.  That is not the way it went.  The room we were in was a very comfortable, casual room, with seating areas.  The groups of people (there were some families, some groups of friends) were spread out throughout the room, and we all chatted amongst ourselves while Mr. Springfield walked around the room, stopping at each group in turn.  He spent time with each group.  When he came to us, it was surreal.  This man who I've listed to on the radio for thirty years; this man who I never in my wildest dreams thought I would ever come in contact with, much less have a conversation with.  This man hugged me!  He autographed the photos I brought with me -- he got a kick out of the collage I had made with the bottom two photos from his appearances on Wonder Woman.  While he was autographing the photos, I told him that I had been gifted the tickets and the meet and greet experience by the Do It For The Love Foundation, and explained to him a little of what they do.  I told him that I have Stage IV breast cancer, and how excited my family and I were to be meeting him.  I told him that the next day was my two year anniversary for being in remission.  Hell of a way to celebrate, huh?  What did he do then?  He stood up and said, "Well, I'll give you a hug just for that."  Here it is almost two weeks later, and I can still hear his voice saying that.  He spent more time with us than I imagined he would, and he made sure he autographed everything and answered any of our questions before he moved on to the next group.  What an amazing night it was.  I tell you -- I can now die a happy woman.  😎


What I forgot to tell him

Mr. Springfield -- if you ever read this, this is what I forgot to say to you that night:

I first heard your version of Katy Perry's Roar a little over a year ago.  Since then, I have listened to it every time I feel down.  Living with a terminal illness, you feel down quite a lot.  You worry a lot, you wonder a lot, your mind goes to dark places a lot.  There are a few songs that bring me back up out of the depths.  This is one, but your version.  Your version is what does it.  I thank you.


Message for Do It For The Love

Thank you, thank you, thank you.  What a wonderful memory to now have.  Alexis and Juliana were so incredibly nice, and patient with my questions.  I really felt that they were just as excited as I was for this to be happening. 

What I remember most about this experience is the graciousness of Mr. Springfield.  He was so incredibly nice, and his smile seemed genuine.  He seemed to enjoy meeting every single person in that room, and made us all feel special.  I will not soon forget it -- his kindness, and yours, for providing the experience to my family.  This experience has inspired me to continue to live life, to find joy in everything, to learn how to dance in the rain.



Monday, September 18, 2017

September 15, 2017 medical appointments update

This past Friday I had my regular every-six-week oncology appointment followed by my regular every-three-week infusion of Herceptin and Perjeta.  These were to be followed by an initial appointment with a gastroenterologist, but that last appointment didn't happen.  Here's how the day went:

I was seen at the clinic in good time.  We talked about my balance issues, my exhaustion level, the fact that the new med we're trying seems to be working.  I told her about the headaches I've been having.  I showed her the pictures of my family and I with Rick Springfield (she had to sign a form for the organization who provided the tickets; I always like to follow up with her after these things).  It was a very nice visit.  Orders were placed for my every-three-month CT scan, my every-three-month echo, and for a brain MRI; the brain MRI because of the headaches.  I'm to try to schedule these for the last week of September, on the same day, or as close as possible to each other.

I arrived at the infusion center approximately thirty minutes late.  That's not unusual. Sometimes the clinic upstairs is running late, sometimes the infusion center is running late; sometimes everything runs on time.  You just never know.  I arrived at the infusion center around 12:00noon.  The took me back to a cubicle at around 12:30 and took my vitals.  Around 1:00pm the nurse accessed my port (which was a little difficult today) and started Zofran, the only pre-med I receive.  The Zofran takes about ten minutes.  I notice after awhile that it's 2:00pm and the Herceptin and Perjeta aren't here yet.  Apparently the pharmacy is running a little behind.  My appointment with the Gastroenterologist is for 2:00, though (I thought that with an 11:30 infusion appointment, 2:00 would be good).  I clearly will not make it in time.  My infusion nurse called upstairs to let them know I was running more than an hour behind, and to ask if they would still be able to see me.  She spoke with the doctor, who then called me.  She was so incredibly nice!  She asked what my symptoms are, asked a few more questions, then told me that I should call Speech and Pathology and tell them that I need a Modified Barium Swallow.  If that doesn't show anything, we'll do an endoscopy.  We'll reschedule the appointment once she has the results.  As soon as I hung up with her, I was able to get that scheduled, for Tuesday.  The same scheduler was able to schedule my CT and MRI for next Thursday.  I'm still trying to fit in my echo. 

So, Jimmy picked me up, and we ended up getting home around 6:30pm.  Man, was I exhausted.  I think I slept pretty good Friday night.  I did have to set an alarm for Saturday morning, as my wheelchair was delivered at 9:00am.  Now the boys are working on constructing a ramp to get the wheelchair in and out the garage door.  We're also trying to find the most cost efficient/easy for me to use a ramp for the van.  To have the van converted is just out of the question.

I spent Saturday and Sunday sleeping most of the day.  Back to work today, Monday, and it was a great day.  I realized mid way through the day though, that I feel like I did during those months before my diagnosis -- scared a little, or maybe a lot, of what the test results will be.  This seems to be a little more than my regular scanxiety.  I'm worried about what these new, non-routine tests will show.  I'm worried that the swallow test will be inconclusive and an endoscopy will need to be done.  I'm worried that either or both of them will show cancer in my throat.  I'm worried that the MRI will show cancer in my brain (headaches are a symptom).  I'm worried that feeling the same uneasiness waiting for these tests and results as I did while undergoing the original tests and results means they'll result in the same bad news.   I'm worried that the median life span of a Stage IV patient of three years will be accurate in my case (it's been about two and a half years to date).  I'm just worried....

Wheelchair!

My wheelchair came the other day.  Now the boys are working on building a ramp to get it in and out of the house easily.  And, we're looking around for a ramp to get it in and out of the van.

Here's a picture of my new ride:



Friday, September 1, 2017

Interesting Article on Neuropathy

I want to share an article that a friend shared with me, on neuropathy:  What is Breast Cancer Related Chemo Induced Peripheral Neuropathy?


Before I start, I want to tell you that I post more often on my facebook page.  Shorter things, funny things, links to things I want to share, pictures at medical appointments.  So, if you are on facebook, take a look at my page here:  Living With Stage IV Breast Cancer.  Here, on the blog, I post longer things.  Thought provoking things, my thoughts on living with a terminal illness, this insidious disease.

Here goes:

I've had mild neuropathy since my first chemo treatment, in the form of tingling on the bottoms of my feet.  I've noticed that it's become more pronounced as time goes on.  I've also started noticing it in my hands.  If I clap my hands, for instance, they hurt (so, I golf clap now).  It's affecting my knitting, which is why it takes longer for me to knit things now, and why it's so very important for me to knit for my future grandchildren before I can't do it anymore.
 The article also mentions another symptom of mine, my balance issues: 
"...the use of chemotherapy has “dramatically improved our outcomes in terms of achieving long-term cure in breast cancer,” there’s a “flip side. Many patients experience toxicity from chemotherapy including the commonly encountered chemo-induced neuropathy, which can present as numbness, tingling pain in the fingertips and toes, but also difficulty walking and balance issues.” 
If you've seen me any time in the past year or so, you've seen me using a cane.  I bought the cane after coming to the realization that I had started walking next to walls, or anything I might catch myself on should I lose my balance.  I realized that I would opt to not go places because I was afraid I wouldn't be able to walk as much as was needed, even simply going to the grocery store or to the mall.  Balance and exhaustion both play a part here.  Whenever I was with my boys, I would take their arm to assist me.  With the cane, I could be a little more independent and not rely on them quite so much.  A few months ago, I acquired a rollator, which is a walker with wheels/brakes/seat.  I also received an order from my oncologist for a motorized wheelchair.  Motorized as opposed to manual because I don't have the upper body strength to operate a manual wheelchair.  I received word just yesterday from the medical supply store that my insurance has approved it, so they are ordering the chair.  I should have it here at the end of next week.  The first thing I do, I think, will be to take Benji for a walk around the neighborhood.  😊

My physical therapist thinks that the balance issues are fatigue related.  My oncologist thinks that they are a side effect of one of my medications.  This article shows that there is a third opinion as to the cause.  The good news is this:  the friend who shared the article with me is on the same medications that I am.  We have a lot of the same symptoms, balance being one of them.  Just today, I'm told, our oncologists got together on the phone and are comparing notes and ideas.  She and I are so hopeful that them putting their heads together will spur on a solution.  I am so excited that they're talking with each other.

This is how it's done, my friends. We talk, we compare notes, we share what we learn from each other with our doctors, they do the research and talk with each other, shit gets done.


Tuesday, July 25, 2017

On Obtaining a Wheelchair

You might remember about a month ago I mentioned on the facebook page about the possibility of obtaining a wheelchair.  I got the order from my doctor and took it to a place not so far away.  Good news.  A place only about thirty minutes away that sells what I need and takes my insurance.  They said it should take approximately two weeks.  Nice.  Nope.  The people working that day were very nice, don't get me wrong.  I've spoken to one of them on the phone about once a week since then.  You see, the owner has his own health issues, and, long story short, the order for my wheelchair is still on his desk.  So, this morning I started calling around again.  Sooooo frustrating.  I really wish the lists that the insurance companies provide would be narrowed down a bit.  I searched for durable medical equipment within twenty miles. Twenty four places came up.  I called all but four of them. Only two sell wheelchairs. They sell cpap machines, or orthopedic supplies, or provide hospital beds, or something else besides wheelchairs.  It's so very frustrating to have a health problem and have things related to it be so time consuming and so much tedious work.  (Don't get me started on keeping the bills and the appointments straight!)  Anyway, I called places on the list according to how far away they are. Today was Woodbridge. Twenty miles?  Maybe as the crow flies.  Anyway, the guy I spoke with was fabulous.  The rep that covers the DC area actually lives in my town. So, I don't have to go to Woodbridge!  He'll come here to take measurements to fit me for the chair, and he'll deliver it when it comes in.  How cool is that?!   I emailed the order over.   Next step is them sending paperwork to my doctor.  Once they have that, they'll send it all over to the insurance company where it will go under review.  The review board at the insurance company will decide if it's medically necessary.  All in all, I will hopefully have it in about a month (cross your fingers) and can get out of the house more.  So many places I don't go because I just don't have the energy to walk as much as it would require.  Just simple things like shopping.  Walking Benji around the neighborhood.  The County Fair in September (at the last event I attended at the fairgrounds, Jimmy had to ask for the golf cart to take me to the van, because my legs just would not go any farther).  Day trips with the boys.  The grocery store!  

Cross your fingers, everyone, and hope that the insurance company will approve it.  I'll keep you updated.

Sunday, July 16, 2017

Who is Your Hero?

Who is your hero, and why?  What can you do to be more like the people you look up to?

I have lots of heroes.  You can read about them all here:  It Takes A Village.  For this specific post, I'd like to talk about my biggest hero, my husband.

My husband who married me before he knew that I would become terminally ill.  My husband who has stood by my side every step of the way since this nightmare started.  Literally -- it started the day the biopsy was ordered, the wonderful people at the front desk called him at work and said, "We're doing this now, come if you can." so he did.  He couldn't be in the room with me, but I knew he was right on the other side of that door.  I could feel his presence.  I leaned on him all the way home, where he tucked me into bed and made sure I was comfortable. The following week he drove me through the snow, and held my hand in the doctor's office while the PA gave us the bad news.  He didn't let go of my hand that day as we were escorted down the hall to the Nurse Navigator's office where she gave me literature, a hand-crocheted blanket that had been donated for times such as these, and a list of local oncology medical practices.  Once Jimmy and I told her we wanted to be seen at Georgetown, that wonderful nurse made numerous phone calls to four different departments at Georgetown, setting up further testing and an appointment with my new oncologist.  She was able to obtain all of the appointments within a two day span, which was no easy feat, I tell you.  She also gave me an order for bloodwork, which we could do there, on the way out.  So, he is still holding my hand as we leave my surgeon's office, walk the hall to the elevator, emerge from the elevator two floors down, and enter the outpatient lab.  It's a good thing that he's holding my hand, leading the way, because I think I'm in shock and have become immobile.  The crazy part of the story is that one of the workers there was leaving the area, so held the door for us.  She admired my blanket.  I nodded and smiled as best I could what with all those crazy thoughts going through my head.  She admired the blanket that I was holding on to for dear life at the point, and she wouldn't stop.  She actually made a joke about taking it for herself.  In my mind, I'm thinking, "Lady -- Do you seriously not know why I was given this blanket?!  It's my lifeline now.  Back the hell off!", but all I could do is give her a puzzled look and turn away.  He held my hand while we gave the paper with the order to the clerk, and answered all of the questions.  He held my hand as I set in the chair while the phlebotomist drew the blood.  He held my hand as we left the building and headed home.  He held my hand while we told our boys.  He held my hand while I told my sisters (which was really hard because we had already lost a sister to cancer).  He held my hand while he told his brothers and sisters.  He held my hand while I let the world know via facebook.

He was by my side through every doctor's appointment, through every test, and through every chemo session.  The night after my port was put in, he again tucked me into bed and made sure I was comfortable.  When I woke up screaming in excruciating pain, he was already out of bed by my side.  He calmed me down enough to have a restful sleep for the rest of the night.

He was by my side when the chemo side effects kicked in, and he helped me through them.  He was by my side when I was too weak to walk, and he held me up.  On my weakest days, he held me up.  He gave me hugs, and I would literally feel the strength leaving his body and coming into mine.  On my worst days, when I wanted to swallow all of the pain killers and end everything so everyone could go back to their lives, he hid those pain killers, doling them out when necessary.

He was by my side while in the pre-op room, waiting for the mastectomy to start.  He held my hand with tears in his eyes as they wheeled me out of the pre-op room and down to the operating room.  He was holding my hand when I woke up in recovery.  He changed the bandages at home.  He drained the drain tubes.  He made sure I was comfortable and well taken care of.

He is still at my side constantly.  He may not go to every appointment with me anymore (they're all routine now, and he has his own medical appointments to go to), but I know he's with me in spirit.  He goes to at least every other appointment these days; other people have graciously stepped in to take me for my weekday appointments.  If you think you might be able to help with that, check out the calendar on LotsaHelpingHands.  There are still dates in September and December that need to be filled.

What can I do to be more like Jimmy?  Show more patience.  When I see a need, jump in and help.  Be more proactive about getting things done.  Be more loving.  Be strong.  Be there for him when he needs it, even if he thinks he doesn't need it.  Be kind.  Do things that need to be done even if I don't feel like doing it, or even feel up to doing it.  That's what he does.  He is an amazing man.

He promised to love me in sickness and and health.  No one ever anticipates the "in sickness" part.  He kept his promise. 

Scanxiety

Scanxiety is the anxiety that builds up before a medical test, and even more while awaiting the results of said test.

Last Friday, I had a routine every-three-month CT scan, and a routine every-six-month bone scan. They're keeping an eye to make sure those pesky cancer cells don't get bigger and/or appear anywhere else. I haven't heard from my doctor, and I'm in the no-news-is-good-news camp. That being said, scanxiety is a very real thing. Until I hear good news from my doctor or see it on the report, there's always that little voice in the back of my head....

So yesterday while I was receiving my regular treatment, I asked the nurse to print out the reports for me.  Here's the bottom line:

CT Scan results:
 




CT Scan results looking at the lung mets we're keeping an eye on:





Bone Scan results:





Needless to say, I breathed a huge sigh of relief when I read the reports.  I'm good for another three months.  😊

Tuesday, June 27, 2017

Wonder Woman


People wonder why I'm a fan.  Why I watch the old series every Saturday night at 8:00pm.  Why I took her on our most recent family vacation (she was our version of Flat Stanley).  The short answer is that she reminds me to be strong.

She reminds me to be strong, even when I want to throw in the towel.

Every time I have to make multiple phone calls to try to schedule multiple appointments for the same day, which entails going to multiple departments within the hospital.   The other day I realized I could find my way from the Lombardi cancer center to the Bles Infusion center to Cardiology without looking at the directional signs on the wall or asking for help. Glad and sad about that at the same time.

Every three weeks when I go for my IV infusion.  Every six weeks when that infusion is coupled with an appointment with my oncologist.

Every evening at 7:00pm when my alarm goes off reminding me to take my daily medication.

Each and every time my port is accessed (if you don't know, I'm deathly afraid of needles; my port is accessed for every infusion, CT scan, and bone scan).

Every three months when I lay down on the bed of the CT scanner and an then have an echocardiogram.

Every six months when I have a full body bone scan (you know when it's scanning your head, it's just inches above; I keep my eyes closed and imagine that I'm laying on a beach somewhere).

 Every time I have one of those tests and wait for the results.  #scanxiety

Every day when I don't want to, but get on the recumbent bike anyway.  I have to keep my heart healthy because one of the medications I'm taking is known to cause heart problems.  Losing weight and building stamina are also goals.

Every time my alarm goes off in the morning and I get up to go to work even though I'm not up to it; I take so much time off for medical appointments, I need to go in on days I really don't feel up to it to conserve my sick leave.  Thank God for summers off and coworkers wonderful enough and able to donate sick leave.

Every time I see an event I want to go to and my "before cancer" self would have said, "Maybe one day...." but now is that "one day".  The most recent event we went to was at the Kennedy Center to see Lynda Carter in concert.  We had the most wonderful night out, and this arrived in the mail a few days later (read more about that here).  This, along with all of the wonderful cards I've received that I look at periodically, remind me to be strong. 

I'm sure there are other instances, but my chemo brain is keeping them hidden for the moment.

If I need more reminding, I go to my facebook videos and listen to Rick Springfield's version of "Roar."  ;)
Here's a better version of it, from the same concert: Roar; Rick Springfield at Calvert Marine Museum July 2016 

Friday, June 9, 2017

The Cost of Cancer


The Monetary Cost

Cancer is expensive.  I have good health insurance.  Really good health insurance.  Even with very good health insurance, though, cancer is expensive.  Every time I visit my primary care doctor, which is about every four months, I have a $10 copay.  No big deal.  Every time I visit my oncologist, which is every six weeks (down from every three weeks while I was undergoing chemo), I have a $15 copay.  Every time I have treatment (Herceptin and Perjeta infusions), which is every three weeks, I have a $30 copay.  In addition to these routine things, I see my cardiologist, my surgeon, my gynecologist, my ophthalmologist, and my oncology rehab specialist periodically.  That's $15 each visit for each specialist.  On top of these copays, there are other medical costs.  Luckily, for my Tamoxifen prescription, I am able to receive a 90 day supply, which is no cost to me.  My other prescriptions, however, are between $10-$20 each month.  Then there are the physical therapy appointments.  Yep, $15 per visit.  Since my surgery a year and a half ago, I've visited my occupational therapist and my physical therapist for three different problems.  Each time, I went twice per week for four to eight weeks.  Then there are the myriad other things we need to buy that we never thought about before.  The cane.  The mastectomy bathing suit and swim form that is not covered by insurance.  The gas for our van that takes me to Georgetown at least every three weeks.  The medic alert bracelet.  The handicapped tag fee.  The handicapped bars for the shower at home.  The dental fees.  Chemo takes a toll on your body.  There are long lasting effects.  It really messed up my teeth.  You've probably heard it before, because I've been procrastinating having the work done.  Partially because I can't yet afford it, and partially because it scares the hell out of me.  Long story short, I have to have the four bottom teeth pulled and a permanent bridge inserted.  This is in addition to some cavities and four root canals that should be done.  Many of my family and friends have contributed to my dental fund, and I have sold some hand-knit items to add to it.  I still have quite a ways to go, though.  I am keeping the dental fund money in a separate account so that I am not tempted to spend it.  I think I will have to get it done in steps, as the money is raised, as it is difficult for me to eat now.  Those front four teeth are sensitive, and they hurt.  I can’t bite into even a sandwich now.  Which leads me to another way cancer costs:


The Physical Cost

You read above about my dental woes.  My teeth are pretty much destroyed.  My fingernails, too.  They used to be long.  No more.  I thought that would remedy with time, after chemo ended.  Not so.  As soon as my fingernails start growing, showing the white part, they peel, crack, become jagged.  I tried a nail strengthening treatment, but it didn't work.  After two weeks, the gel polish is peeling off.  Maybe if I do it consistently, it might have an effect over time.  Maybe.  But, it is an extravagance that I really can’t afford to keep up with.

Fatigue -- I’m tired all the time now.  Physically exhausted constantly.  Too tired to do the housework I used to do.  My husband and sons have taken up my slack.  At work, I don’t walk around as much as I used to.  I’ve had to ask for my hallway duties to be changed.  I lose my balance when I walk.  I realized one day that I had been walking near walls, always looking for something to catch myself with should I stumble.  I avoid stairs as much as possible, as I am very afraid of losing my balance on the way down.   Most of the time this is easy to do, but sometimes it's difficult.  For instance, the day the fire alarm went off at work.  I work on the second floor.  Usually when a fire drill is scheduled I make sure I'm downstairs before it's called so I don't have to use the stairs.  This day, though, it was not a drill, and was unexpected.  I stood at the top of the stairs for a few minutes, alone, contemplating going down, trying to work up my courage to do so.  I had no choice, so off I (slowly) went.  Two people walked past me.  Two people, coworkers, not students, who didn't acknowledge me, or offer to help a woman struggling down the stairs with a cane. Yes, I could have asked for help … but my mind was too preoccupied with concentrating on getting down each step, one at a time.  That's another story, though.  I do have a lot to say about what that says about our society in general.

So, I use a cane now.  My physical therapist thinks that my balance issues are fatigue driven.  Fatigue is a side effect of Tamoxifen, which I take daily.  I am working on building up my stamina with a recumbent bike, and I will begin taking water fitness classes as soon as I buy a mastectomy bathing suit.  I can’t really go to a public pool with just one boob now, can I?  J

Which leaves me with the biggest physical cost.  The breast amputation.  The correct term is a mastectomy.  I had a left modified radical mastectomy with lymph node dissection.  I like to call it what it is, though.  They cut my boob off, plain and simple.  My surgeon and my oncologist discussed it, and decided it would be in my best interest to not have reconstruction.  It would have delayed my maintenance treatment, and that is more important.  After hearing some not so nice stories about reconstructions gone wrong, I am happy with the decision.  It’s been an adjustment, so say the least.  I used to say, “Is this somewhere I have to wear a bra?”  Now, I say, “Is this somewhere I have to wear the fake boob?”  You get the picture.


The Emotional Cost


Most of my family and friends have been absolutely wonderful.  Incredibly supportive.  Not only while I was undergoing chemo and surgery, but even now, two years later.  I think people understand that this is not a treatment-recovery-done kind of thing.  This will be ongoing, for the rest of my life.  The treatment that I'm on will be forever, or until it stops working and we try something else, or it stops working and I enter Hospice. 

On the other hand, some of my family and friends treat me differently now.  I don’t know – I wonder if they thought it was going to be a treatment-recovery-done kind of thing, and are resentful of me because it’s not?  Do they think it was and I’m milking it, somehow taking advantage?  Some who used to come over often don’t come over at all anymore.  When I’m at an event, I am studiously ignored by people who used to talk to me often.  I will never forget the night of my son’s confirmation.  I was sitting in the vestibule of the church, scarf on my head, waiting for him and his dad to come out.  A woman who I thought was my friend walked past me with the event program held up to her face.  That is an image that will stay with me forever.  I was crushed.  Before cancer, we would have greeted each other, asked about the boys (her son was being confirmed, too; the boys had been in playgroup together as toddlers).  Aside from friends who treat me differently, some family does, too.  They might not think I notice.  They might not notice themselves.  But I notice.  My children notice.  That’s what bothers me the most.  That my children see it.

Other than people treating me differently, I guess you could say I treat me differently, too.  My perspective on things changed.  When I was first diagnosed with cancer, I thought I didn’t have much time left.  Seriously, it’s Stage IV cancer.   In my mind I went to the funeral home to pick out my casket (it’s blue, by the way).   The grim reaper is knocking on my door.  I was overcome with grief.  My doctor, thankfully, prescribed an anti-anxiety.  She also suggested that I see a therapist, which I did.  My therapist talked me down from the ledge.  She taught me about guided meditation and recommended some good youtube channels.  My husband was instrumental in talking me down from the ledge, too.  He and my sons (and let’s not forget our dog) have been such a support.

I am no longer thinking I’m going to die anytime soon, but it’s always there, in my mind.  Although I have hope for a long life, I do have to face the reality that it could change at any time.  I am a member of a few stage four support groups on facebook.  It’s not unusual to see someone who had been so active with advocating and supporting other members suddenly disappear.  Sometimes we hear from their families that they’ve entered hospice, or that they’ve died.  I’ve seen that when the downturn starts, it doesn’t take long.  Strong women, active women, alive women, suddenly aren’t vibrant anymore; suddenly aren’t alive anymore.  When it happens, it happens fast.  That scares the hell out of me.

Let me end by saying that, although there is a big emotional cost, there is also a huge emotional reward.  I’m not saying cancer is a gift, please don’t get me wrong … it is nowhere near a gift.  The emotional reward is in the form of friends I haven’t seen in years (we’re talking up to 30 years here) have come to visit.  The cards in the mail.  The thoughtfulness.  Just yesterday I received a Wonder Woman magnet and small poster from a friend.  The texts, the facebook messages.  My boys.  My wonderful husband, two sons, and dog.  Such love.  It’s pleasantly overwhelming.  So, although there is a high cost to cancer (monetarily, physically, and emotionally), there is the overwhelming support I have received.  That is worth much more than money.

Thursday, May 11, 2017

On Using a Cane....

I did it. I bought a cane.

I have balance issues. I can't walk up/down even a curb without holding onto something for balance. I've found myself at work walking next to the wall in case I need to reach out to steady myself. Whenever I'm standing, I find the nearest thing to lean on. Whenever I walk with my husband or sons, they automatically put out their arm for me to hold on to.  I'm going to physical therapy for my balance issues, in addition to the muscle cramping. They think that it's fatigue driven.  I think they're right.  I am working on pushing through the fatigue, but wow, it's hard. So, I had been mulling around about getting myself a cane. Not to help me walk, but just to help me keep my balance. Hopefully I will be carrying it mostly and just using it to lean on when there's not a wall or a post handy.   In that aspect, I think it would be very helpful.  On the other hand, I worry that I will become dependent on it.

When I mentioned it to my physical therapist the other night, she said that, after watching me walk out last week, she was going to suggest it. It's just for balance, I won't need it all the time, and she doesn't think I'll become dependent on it.  She also thinks that it will help with my exhaustion.  She says that with the cane, I can relax when I walk, and not expend energy looking for something to hold on to or to lean on.  Yesterday I used the cane at work for the first time.  I still have mixed feelings about it.

I think I resisted it because I'm so afraid that it means that I'm deteriorating, not getting better.  So
many times since my diagnosis two years ago I've logged on to facebook to see that someone in one of my cancer support groups has died.  Most of the time, I'm finding, the deterioration happens
quickly.  They were doing so well, advocating, making memories with their families -- living!  Sometimes a family member will post that so-and-so has entered hospice, or is in the hospital again.  Maybe a week to two goes by and that same family member will let us know that our friend has died.  Sometimes it's much quicker.  About a month ago, I was seeing this particular woman post photos of a herself and others filming a documentary.  A few hours later, I started to see condolences pop up on her page.  It was that quick.  That's why so many of us in the metastatic cancer community live in varying degrees of fear.  Fear the cancer has come back.  Fear that the medication isn't working anymore.  Fear that there aren't any other medications that will work.  Fear of entering hospice, because we know that means the end for us.  So, it is with trepidation that I use the cane.  I fear that it is the beginning of the end.  I understand that this fear is most likely unfounded, but it's still there, hiding in the back of my mind....

Sunday, April 16, 2017

The Night I Almost Met Lynda Carter....

If you know me at all, you know that Lynda Carter is a favorite celebrity of mine.  In 1975, when I was 10 years old, Wonder Woman came on the air.  Back in that time, there was no Netflix, no on-demand, no TiVo, no VCRs.  If we wanted to watch something, we made sure we were home at the time it came on, or we waited until summer reruns, and try to catch it then.  I made sure I was in front of the TV each week when it came on.  Little did I know I would be watching this all these years later.

You might remember one of my blog posts, It Takes a Village.  In it, I mention how watching Wonder Woman helped me through the hard days of chemo, and surgery recovery.  I finally found a quote that really sums it up:

"People always ask me why I love Wonder Woman....  
It's because she reminds me to be strong when I don't want to be."  

I don't know who to attribute the quote to, but it really is fitting.  To help me remember, I have some Wonder Woman themed things -- sunglasses, the tiara, a few figurines, a water tumbler, Legos.  My keychain is a Wonder Woman Lego.  It might sound silly to you, but having the reminders help.

It's not just the Wonder Woman character.  It's Lynda Carter as a person.  She's never been tabloid material.  She's been married to the same man for over thirty years, and it's not a stereotypical Hollywood marriage.  Her husband is an attorney in the DC area, and as far as I know, they've lived here the whole time.

I knew that she tours as a singer, and it was on my "one day" list.  You know, that list you have in your mind where you put things that you want to do, but don't have the time/money/energy for?  Those things that when you see advertised, you think, "Oh, that would be cool.  One day...."  Well, my friends, One Day is here.  When I saw on her Facebook page that she would be at the Kennedy Center (another of my "one day" things; can you believe that I've lived in the DC area my entire life and have only ever been to the Kennedy Center for my kids' school field trips?!), I decided that I had to go.  I didn't get seats down front, they were sold out by the time I was able to get the tickets.  So, we ended up sitting three rows back in the upper section.  They turned out to be the best seats in the house.

It started normally enough, when a couple went to find their seats in the row in front of us.  We exchanged pleasantries, he joked that he would try to scooch down so I could see, I joked back that I've learned to bob and weave (I'm short).  His wife, though.  She was stunning. She struck up a conversation, saying that they were there to see her friend sing.  Her friend.  So of course I had to ask if she would pass along my thanks to Ms. Carter.  I related to her about how I got the DVDs of all three seasons of the Wonder Woman series from the library, and how they helped me through the hard days of chemo and surgery recovery.  She clasped my hands as I told her my story.  She said I need a tiara.  😊  As we were chatting, a gentleman came up the aisle and stopped to speak with her and her husband. After he continued down the aisle, Ms. Langhart turned back to me.  She told me that the gentleman was Robert Altman, Lynda Carter's husband, and that when he comes back, I would have to relate my story to him.  Then, during our conversation, while gesturing to her husband, she made a passing remark about "he was Secretary of Defense just before 9/11...."  In my mind I'm thinking, "Wait.  What?  Wow!"  She said it so nonchalantly.  I just don't know what she said after that; it was such a surreal conversation for me.   When Mr. Altman came back to his seat, she had me relate the story to him.  He asked me for my contact information, and three days later, an autographed photo came in the mail.  What a night!  Jimmy, Jimmy, and I sat in a theater inside the Kennedy Center, behind former Secretary of Defense William Cohen, his wife (turns out she's Janet Langhart, famous in her own right), Lynda Carter's husband, and their daughter (when she wasn't on stage with her mother).  Wow!  They were all so incredibly nice, and Ms. Langhart, you were just drawn to her.  Even after the show, Ms. Langhart turned around to see how we liked the show.  It was incredible.

On a side note, I want to say, watching someone watch their spouse on stage was amazing.  She sang a song that she wrote for him, and I swear I watched him wipe a tear from his eye.  I remember saying to Jimmy, "He is still enamored of her."

Ms. Carter, if you ever read this -- Thank you for the autographed photo.  I treasure it.

Ms. Langhart, if you ever read this -- I don't have the words to thank you enough, and I do hope our paths cross again so that I might thank you in person.  Maybe at next year's show?  😃






    

Friday, March 31, 2017

It's the end of March! No posts since January! Where have I been?!

I've been here.   Tired, but here.  In January, I was pulled from my regular duties at work to help out elsewhere, which took away all of my downtime.  No time some days to even turn the computer on.    Nice change of pace, but exhausting.  Today should have been the last day for that, we'll see tomorrow.


I have a facebook page connected to this blog, where I post shorter items, doctor visit check-ins and updates, medical test results, things like that.  I try to add some levity with posting comical items, too.  So, if you read this blog, you also want to like that facebook page.  Here's the link:  Living With Stage IV Breast Cancer facebook page.


So, where have I been?  Other than working with no downtime, I spent an unexpected week or so off of work in February being a co-caregiver (along with my husband) to our 19 year old son, who had an emergency appendectomy.  He ended up spending a week in the hospital, and then was sent home with ten days worth of three different IV antibiotics.  We hooked that poor boy up five times a day.  He's doing well now; he's still more tired than he'd like to be, but it could have been so much worse.  His surgeon said that his appendix had been burst for three or four days.  Crazy.


So, for a time both my husband and I took time off from work to care for our son.  After a week at home, we started taking turns.  I was due to go back to work the following Monday, when at 3:00 that Monday morning, a tree in our backyard fell onto our house.  So, with no going back to sleep after that, and the tree removal people coming, I stayed home to be caregiver while my husband and his brother supervised the tree removal.  Never a dull moment here!


A few weeks ago, my family and I were invited by another stage four friend to the Hippodrome in Baltimore to see a performance of Stomp.  The evening included a reception before the show, the show itself, and a meet and greet after the show with the cast.  VIP tickets were sold to benefit Leslie's Week, a wonderful organization that gifts "vacations away from cancer" to stage four families.  It was such a fabulous evening.   I posted photos on my personal facebook page.  The album is set to public, so even if we're not facebook friends, you'll be able to see it.  Look for the photo album entitled "Stomp".


This past weekend, I hosted a Touchstone Jewelry party.  A high school friend of mine has recently become a consultant for them, and we thought this would be a wonderful way gather with friends.  It was such nice day.  Friends from high school came over (it's been thirty-ish years since
high school), as well as current friends, and even a high school friend of my husband's.  She and and I became facebook friends so that she could keep up with my cancer updates and then we found out that we're both in the same knitting facebook groups.  It was incredible meeting her in person.


When routine tests go wonky -- Monday was my regularly scheduled every-three-month echocardiogram and CT scan.  I have a CT scan every three months to keep an eye on things.  There are still spots in my left lung.  They might be cancer; they are most likely scar tissue.  I have routine echocardiograms to keep an eye on my heart, as one of the meds I'm on (Herceptin) is know to cause heart issues.  Echo was first, and seemed to go well.  Then the technician took my blood pressure.  It was 188/89.  I sat for five minutes, quietly, then it was taken again.  It was 187/91.  Blinking red.  Wow.  Since I was not symptomatic, he said I was free to go, but I should contact my doctor.  As I sat in the Radiology waiting room for my CT scan, I sent an email to my oncologist's nurse.  After we emailed back and forth a few times and spoke on the phone throughout the day, we decided that I would track my blood pressure for 7-10 days, and make an appointment with my primary care physician.  After the CT scan, I went home, and there my blood pressure was 154/90.  After a two hour nap, it was down to 117/73.  Phew!  I tracked my blood pressure and brought the data to my primary care physician, who agreed with me that it was most likely caused by anxiety about the echo.  I was very calm, at least outwardly.  Apparently, though, I was unconsciously freaking out. 
That brings me to this weekend.  Tomorrow (Saturday) is my regularly scheduled every-three-week infusion.  So, Saturday's plan is to do a bit of housework in the morning, spend a few hours at Georgetown, then rest.  If the past is any indication, Sunday will be spent resting. 


That's it so far.  Say tuned on Monday for another post!



Monday, January 23, 2017

In Your Face, Cancer!

Last week while at a medical appointment, I was knitting with some very bright pink yarn.  The person I was with knows how I feel about "pretty pink ribbons" and how I feel that the awareness campaign needs to shift to a research campaign.  So, as I'm knitting with this obnoxiously pink yarn, she remarks on how bright it is.  Yep, it sure is bright.  Paraphrasing here, she said, "No, it's really bright.  It's not frilly light frou frou pink.  It's 'In your face, Cancer!' pink.  It's 'Take that, Cancer!' pink.  It's a good pink for you."


So, when I was having a pedicure on Saturday, I was originally going to go with a shade of blue.  Did I?  Nope.  When I related the above story to my wonderful nail stylist, and told her I wanted to find the most obnoxious pink they had, we found this:


So, IN YOUR FACE, CANCER! 
~~~~~~~~~~~~~~~~~~~~~~
If you want a great place for spa services, I highly recommend Nails & Faces of Joy Spa
I highly recommend my nail stylist, Michel-le.


If you'd like to know more about the free spa services offered to cancer patients, click here: Survive & Thrive.   Here is the information from their website:

Monday, January 16, 2017

My First 911 Call

I say my first 911 call because I know there will be more.  I have a terminal illness.  I watched my father live with cancer.  I watched my sister live with cancer.  I watched my mother deal with being paralyzed on her right side as the result of a stroke.  Sadly, I did not pay enough attention to how they lived with it.  I really wish I had been more attentive, and a better caregiver; a much better member of their respective villages.

Here's what happened last Monday.  Because of my treatment the previous Saturday, I knew what was coming.  You learn to predict when the side effects will hit.  I took some Imodium as a preventative.  Choked on the damned pill.  Have you ever seen one?  They're really small.  Leave it to me....  You would think that I could just cough it up, right?  Nope, that sucker was stuck.  So, I called (as well as I was able with a very quiet, raspy voice) to my boys, who were (thank God) home.  David heard me and came running.  He got Jimmy.  While Jimmy tried the Heimlich, David called 911.  Then they switched.  Finally, it seemed to move enough that I could breathe easier.  It was still in my throat, but it wasn't blocking my airway.  We decided at that point to call off the ambulance, as there was nothing they could do, and I seemed to be fine.  They got the word just before they turned onto our street.  The boys watched them go past, turning their lights off.  So, with my really sore throat, I changed my clothes and got myself to work.  Yes, it was scary.  Yes, it will probably happen again.  That's the reality of living with a terminal illness.

Why did it take me a week to write this post?  Because after it happened on Monday, I went to work.  After work, I went to my Uncle Charles' viewing.  It took us two hours to drive there (rush hour traffic), and it was packed.  We stayed until 8:30, which was already past my bedtime.  Tuesday was the funeral.  It started at 10:30, with an hour's worth of speakers before the Mass, then the longest funeral procession I have ever seen to the cemetery, then the reception after.  Wednesday, Thursday and Friday, I've been pulled from my regular duties at work to help out elsewhere.  ...and I had to say no to a wonderful woman who I usually say yes to when she needs me to help out.  I felt like I was being pulled in three directions at once.  This week I will manage that better (she says now, lol).  I also did a bit of the grocery shopping, which is unusual.  This weekend was spent resting and knitting some of those cute pink hats that have cat ears for some friends.  I still have two more to knit before this weekend.  I also had physical therapy appointments, and a dental appointment today.  That did not go well.  That's the subject of a complete other post.  Let's just say I'm ready to just let my teeth rot out of my head right now.

Why do I sound grumpy in the last paragraph?  Mostly because of the dental appointment.  I'm incredibly disheartened by what chemo has done.  As an extension of that, those things in the last paragraph that I mentioned that I did last week that made me so tired?  Normal things, every one.  They shouldn't have made me tired, exhausted really.  Mostly, it's because I think it really sucks that two wonderful teenage boys have to deal with this.

discouraged....

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