aLive @ Stage 4!

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

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'

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 gi

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 tic

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 othe

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:

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

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 h

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 da

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.  😊

   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 yo

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

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

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

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 differe

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 J

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 Jim