aLive @ Stage 4!

It's just after 10:00am on Christmas morning.  Jimmy and I are sitting in the living room watching the Today show relaxing after a long day yesterday, Christmas Eve. We hosted the family Christmas party this year.  Jimmy's brothers and sisters (and their families) gather together on Christmas Eve every year.  Every year, as people get married, have babies, the crowd gets bigger.   We take turns hosting.  We haven't hosted in a few years; other siblings were taking our turn because they didn't feel we were up to it.  They were right, we weren't.  We weren't really up to it this year, either, but I felt compelled anyway.  I don't know, I think somewhere in the back of my mind, I wonder if this will be my last Christmas.  My doctors tell me that I have years left yet, but with a terminal illness, you can't help but wonder.  Anyway, I felt that I needed to host this year. We started preparing a few weeks ago.  I'm not gonna lie --...

The day started off like any other routine medical day.  A friend was able to drive me to the hospital for my appointments.  That's important because, as my blood pressure has been high when taken at the doctor's office, I'm supposed to take my anti-anxiety med before I leave the house, so that my blood pressure shows normal.  I can't drive when I take it. We left the house at 8:00am, hit a bit of traffic (not unusual), and pulled up to the hospital at about 9:20 for my 10:00 appointment.  I checked in at the clinic for my appointment with my oncologist, then sat in the waiting room.  I alternated between knitting and closing my eyes.  I was called back to a room just after 10:00.  The wonderful girl who takes my vitals (always has a smile and a hug) apologized for the wait and told me that they were running behind.  Not surprising, and no big deal.  Sometimes they run early, some times right on time, sometimes late.  All depends. I ha...

People have asked how they can be of help to us, so I thought I'd list some ideas out here. Most everyone has been so incredible (yep, I said most; some friends have disappeared, but those of you reading this -- incredible). People surprise me every day with kindness shown. It's phenomenal. There are some specific things that we could use. Some more than others. Yes, I know it's been three years for me and two for hubby, but neither of our illnesses is going to go away until we die. Our health is going to do nothing but deteriorate; neither of us is going to get better. It's incredibly difficult, having changed so much. So much that neither of us can do anymore, or do well. We both move so much slower now than we did even last year. We have to sit and rest constantly during chores. We've applied with Rebuilding Charles County/Christmas in April for assistance, but I'm really not clear on exactly what they're going to do for us. I believe that...

It is now the Sunday before Thanksgiving, in the year 2018; it is just past 4:30pm.  I am currently sitting in a very comfortable red cushioned chair inside Radio City Music Hall in New York City, awaiting a performance from the Rockettes.  Jimmy, Jimmy, and David are with me.  I am so very excited to see this show, and having my boys here with me.  I remember as a child watching the Rockettes on television at home with my parents.  I'm feeling a bit nostalgic here.  My parents would have loved to see them in person. Let me back up a bit to tell you how we got here. It has been a whirlwind of a few days.  We're in New York taking part in a retreat vacation provided by a wonderful organization, Inheritance of Hope .  The trip started at 7:30 yesterday morning when we left our house to make our way to the train station.  We took the train from Union Station in DC to Penn Station in NYC.  It was so much easier getting through the trai...

So, I think you all know that there's this wonderful lady out there who provides spa services, complimentary, to cancer patients ( Joy Johnson, of Nails & Faces of Joy Spa ).  Today, she was interviewed on our local morning news program.  I was with her, as a client who receives these services. I was a little stressed about driving from home to Arlington in rush hour, before sunrise.  Luckily, the remnants of Hurricane Michael passed through overnight, so it wasn't raining.  I left my house at 5:15am, to ensure I'd be there on time even if something happened to mess up traffic.  I made it there in about an hour.  So, I set my alarm for 7:30 in case I dozed off, and rested in the van in the parking garage until it was time to go up. So, finally it was time to go upstairs.  We met up in the lobby, checked in at the front desk, and waited for our escort, Nakea Simon.  She was super nice.  She took us, and some other guests, up to the gre...

Well, I blinked.  Just like that, he's 21, and his life is flashing before my eyes.    I remember so vividly the day we confirmed the pregnancy with the doctor.  I was able to get the latest appointment of the day, so neither me nor my husband would have to leave work early. We ended up sitting in that waiting room for three hours before being called back. The doctor has some emergencies to handle, and the waiting room was full. I distinctly remember a young woman, very pregnant, walking constantly around the waiting room, with bedroom slippers on her feet. She look incredibly uncomfortable. I kept hoping that she would be called back soon. Yes, we could have rescheduled and come back another day, but we opted to sit it out and wait. Of course, the test came back positive, and we were over the moon happy. On the way home, I called my mom (because, you know, cell phones were a relatively new thing at that time) and he called his. The next day during luncht...

He reviewed the CT scan, and there are no new nodules.  As he went over it with me, he pointed out that not only does he see no new nodules, he sees no nodules at all .   That is huge for me because when I was diagnosed, there were seven nodules in my left lung.   [happy dance!] In regards to the groundglass opacities n the right lung -- the scan report states "less conspicuous compared to prior" which simply means it's a bit smaller.  What he showed me on the images is that it's moved.  So, in his office visit summary, he says that there is migratory groundglass which means small areas of inflammation.  So, it's a "keep an eye on it" kind of thing. Going forward, he simply wants me to follow up with my ENT as scheduled in October.  He also wants me to call  him after I have my next CT scan so he can review it with me over the phone. On a side note, he was  nice enough to print out my echocardiogram for me.  My previous EF wa...

Otolaryngology To refresh your memory, months ago I saw a gastroenterologist because swallowing had started to become more difficult.  I had been able to swallow my pills with milk (milk is thicker than water).  After awhile that became difficult, so I started using applesauce.  It wasn't an urgent problem, but seemed to be getting worse over time, so I wanted to get it checked out before it did become unbearable. First, I had a swallow test done, which came out fine.  Then, I saw a gastroenterologist, who performed an EGD (I was sedated while she put a scope down my throat to take a look).  That, also, came out fine.  The gastroenterologist referred me to an ENT. This past Thursday was my appontment with the ENT, at the Department of Otolaryngology at Georgetown.  After she and her PA sprayed an antihistime and a numbing agent into my nose, I sat for a few minutes while the numbing agent took effect.  Then, they inserted a tiny camera on the...

Today's appointment was at 10:00am.  I like to allow two hours in case of traffic.  Thought today would be light traffic being the day after the holiday.  Woke up to the traffic report saying that there was an accident on my regular route, so taking an alternate route.  Usually when one way backs up, the other ways are heavy with traffic.  Turns out that my husband forgot his medication, so I made a slight detour to his workplace to drop off his meds.  Breezed right in to the hospital.  No traffic to speak of.  I was actually twenty minutes early.  The waiting room at the clinic, though, was crowded.  I settled in with my knitting for a long wait.  No coffee today, as my cardiologist had ordered fasting bloodwork, and I like to have the nurses in the infusion center take it after they access my port.  Less needle sticks that way.  To my surprise, I was called back right away.  The appointment went well.  I brou...

So, you saw my post about Wednesday's cardiology appointment. Since then, this: Thursday morning I went to the dental school in Baltimore to pick up my temporary partial. I drove myself. Had to stop once to rest my eyes and stretch. Overall it was a great appointment, even though the student I was seeing graduated and will no longer be there. I stopped for a quick lunch on the way home, and another doctor's appointment. I need to see my gynecologist yearly not just for the regular reasons, but because with Tamoxifen I'm at risk for ovarian cancer.  Everything was fine at that appointment,  nothing to worry about.  Thursday was a full, long day. Yesterday, I had a 1:30 appointment with my new dental team. I have a friend who is not a dental hygienist like I thought, but is a CDA (Certified Dental Assistant), who does so much more than a hygienist does. I had never thought to go to her dental office because it's in DC. Well, with my health issues, not being...

As I may have told you before, there are specialists that I'm to see at least once a year for routine monitoring.  I haven't been very good at that.  Today I saw my Cardiologist for the first time in, well, let's say it's been well over a year.  To refresh your memory, one of the medications that I routinely receive, Herceptin, is known to cause heart trouble. We talked about my current  medications and I told her about how Dr. Pohlman (my oncologist) and I have been talking about adjusting them, which we will talk about again at my visit next week, and hopefully put into place.  More details on that next week, if we actually do it. We talked about an exercise and healthy eating plan.  The weight loss is secondary though, although I have high hopes that it will happen.  The focus, the goal, is having the heart, lungs, and muscles working together.  She thinks that this will help with my exhaustion levels.   She gave me an eating plan...

Since my diagnosis over three years ago, I have been very open about my situation.  I have shared my story as it unfolds for a few reasons.  The most selfish reason is that I need your support.  I would not have gotten through these past few years without the outpouring of love from my community, my village. The other reason is this:  I sincerely hope that it helps you help your loved one who has cancer, or any health issue.  By sharing what I'm going through, my hope is that you understand a little bit better what your loved one is going through.  If you have cancer, my hope is that by sharing what I'm going through, you will be better prepared with what to expect with your treatment, side effects, life as a cancer patient. Since my diagnosis, a few people have reached out to me.  Some have put their loved ones in touch with me.  Some have contacted me directly.  I help the best that I can.  There's not much I can do financially or ph...

I got some devastating news yesterday.  My 92 year old aunt is in renal failure, and is refusing dialysis.  I'm told by my cousin who spoke with our aunt's nurses that "she knows this is the beginning of the end".  They say that it could be as little as a few weeks until her final days. A little bit about Aunt Kathryn:  She is one of ten siblings, my father's sister.  She is a retired nurse, and nun.  She is currently residing in a convent for retired nuns.  She and I share a birthday.  She is loved by many. Yesterday afternoon and evening was spent in a group chat with my cousins.  We have created a group calendar online on which we can all post.  We are filling in the days with the dates of our visits to our Aunt Kathryn, so that she will not be alone for the rest of her days. This all brought to mind when my sister was in the hospital, and the doctors told us that there was nothing else they could do.  It was time to transf...

Let me preface this by saying why I tell you all of this.  It's not so you'll feel sorry for me.  I do that enough myself.  My hope is that by understanding a little better what I go through, you might better understand the actions and feelings of your loved one going through a tough time.  Also, so you understand why I might be a little snarky sometimes, and seem to have lost my filter a bit. ~~~~~~~~~~~~~~~ This week was a tough week for me.  I've been pulled from my regular position at work to help out somewhere else.  That's fine; that's not a problem; I love the work.  What is stressful is trying to balance the two.  I've been more tired this week than usual.  We were all so tired the other night that we didn't even have dinner.  Not just the "cereal for dinner" time -- we didn't even have the energy for that.  This week, a few loads of dishes and a few loads of laundry were done, but not much else. Yesterday, I received ...

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 Swav...

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.  ...