Thursday, March 24, 2016

Shopping by Myself

I went to BJ's this morning.  By myself.  Just like everybody else.  It's been almost a year since I've done any kind of shopping alone.  So, even though it's an everyday thing for most people, and used to be commonplace for me, it was unusual.  You may remember from my previous blog post that my best times are in the morning.  Since it's Spring Break and I work at a school, this Thursday morning did not have me expending all of my energy at work, as is usual for a weekday.  So, I decided that I wanted to surprise the boys by going and buying Easter dinner, and some things for Easter baskets.  I bought a small ham and some side dishes, along with some Easter candy.  They didn't have much in the way of chocolate bunnies, though.  I did buy a cute little flower filled basket to put on the kitchen table.  I also bought something for dinner tonight.  Tomorrow morning I just might go to CVS by myself to pick up my prescription and buy some more things for the Easter baskets.  I'm sure they have a plethora of chocolate bunnies there.

So, I went to BJ's, I put everything away, I made a sandwich for lunch.  Normal stuff, right?  Yes.  Yes.  :)  This is the normal stuff that the boys have been helping me with for a year.  I'm tired and sore, but pleased.  Pleased that I hopefully have eased the burden from the shoulders of my husband and my 18 year old just a little -- they don't have to worry about Easter shopping. 

Now, it's rest time -- time for some knitting, Diagnosis Murder, and maybe a nap.  :)

Sunday, March 20, 2016

A Day in the (Cancer) Life

All of my treatments, tests, oncology, and cardiology appointments take place at Georgetown University Medical Center.  With no traffic, it usually takes about 40 minutes to get there from home.  In rush hour, it has taken up to two hours.  I try to consolidate my appointments in as few days as possible, because it can take so long to get there, and to minimize the number of days taken off from work.  I thought I'd share with you what a day looks like.  Actually, I'll illustrate "regular" days and "medical" days.

A typical, "normal, every day" work day has me working at a high school as a teacher's aide.  I love it.  My co-workers, the students -- the day is never dull.  Most days are exhausting, sometimes quite entertaining; never dull.  :)   Before my treatments started a year ago, a normal day would consist of actually doing productive, "normal" things after work.  I would make dinner (most days), play with the dog, drive the boys to and from their activities, sometimes doing a little shopping.  I also taught a 6th grade religious education class at my church on Monday nights.

These days, a typical work day has me maybe doing a load of dishes when I get home from work, but that's about all I have energy for.  It seems I have the most energy in the morning, and that's really not a whole lot of energy.  So, I'll get home from work, maybe unload and reload the dishwasher, then it's into the recliner in the living room for a rest.  If I have enough energy, I'll knit some.  Most work days I don't have even enough energy for that.  I might read a little, maybe play a little Candy Crush, and let me tell you how I've seen every episode of Bones and Castle so many times I know who the killer is before the end of the opening scene.  Jimmy or Jimmy will typically make dinner, then at 7:00pm, the alarm goes off on my phone to remind me to take my medicine.  I have four that I take on a daily basis.  I'm usually in bed by 8:00pm, and it's rare that I'm awake after 9:00pm.  It's increasingly hard to get up out of the chair, so I try to climb in to bed to rest before I cross the line to being too tired to get up from the recliner in the living room.  Lately (this past week specifically), I've done a bit more than just go home and rest.  Twice I've made dinner (with a lot of help from the boys) and two nights I ran errands with my 18 year old.  Boy, was I exhausted all day Thursday and Friday.

My typical non work days used to be filled with generally the same activities as evenings on work days, just more.  During the Fall months in the past few years, I participated in craft fairs on Saturday mornings, selling hand-knit items.  These days, Saturdays and Sundays (and school holidays) are spent resting.  Generally, I'll have a cup of coffee, then do the dishes and if I'm feeling really ambitious, I'll carry a load of laundry upstairs and put it in.  I may or may not go up an hour later to switch the laundry.  No more craft fairs.  I don't have the energy to knit as much anymore, nor do I have the energy to get up that early on a Saturday morning, and stay there until 2:00pmish.  At least once a month, Jimmy and I try to have a date night.  Well, the dates are actually during the day.  When my infusions are on Saturdays (I'll explain the infusion schedule below), sometimes we'll stop somewhere on the way home.  We've detoured to the Shrine (to light candles, to browse the gift shop), we've stopped at various places for lunch, we've detoured to a yarn store in Alexandria, we've detoured to Arlington to visit the graves of my husband's mother and step-father, we've gone window shopping, we've driven past the house my husband grew up in and neighborhood haunts.  For the past few non-infusion Saturdays that we've gone somewhere, we visited three different local wineries.  We've decided that I need to get out of the house more; since late October when I started back to work after my surgery, it's been home and work and home and work....  A change of scenery is definitely needed.  After Saturday's activities, Sunday is usually spent reading, knitting, and resting.  As time goes on, I will become more active.  Last Saturday I actually got on the treadmill for twenty minutes.  Not this weekend.

Why am I still so tired all the time you wonder?  My last chemo day was August 13.  My surgery was September 11.  I was back to work full time October 26.  I've been told by fellow breast cancer patients/survivors as well as medical staff that it could take a few years to fully recover from chemo.  There are lasting side effects.  Exhaustion is one.  Neuropathy comes to mind as I type this, as the bottoms of my feet are tingling.  Also, one of the side effects of one of my maintenance medications is exhaustion.  I've read in the facebook support groups I'm in some women stop taking the medication because the exhaustion can become debilitating.  I started taking Tamoxifen not long after surgery.  I do try to move more every day.  Some days I do well, some days I overdo it. 

That's what my "regular" days look like.  Here is what my "medical" days look like:

In general --

I originally was seeing my oncologist once every three weeks, coinciding with chemo, and now maintenance infusions.  My oncology visits have slowed down to once every six weeks, and will be spaced farther apart as time goes on, and the cancer is kept at bay.  I have maintenance infusions once every three weeks.  The maintenance medications are to keep the cancer from coming back.  I receive two medications via IV, each one taking thirty minutes.  Here's a picture of the robot that delivers the medication to the infusion center: 
It's very polite.  :)  If it senses someone/something in it's way, it will say, "Excuse me, I'd like to pass please."  Randomly it will say, "It's time for a coffee break" or "Nice weather we're having outside". 

I originally was seeing my cardiologist once every three months.  I see a cardiologist because one of the maintenance medications can be detrimental to the heart.  My cardiology visits have slowed down to once every six months now, because so far so good.  :)

To monitor to see if any of the nasty cancer cells are visible/growing, I have a CT scan and an echocardiogram every three months, I have a bone scan every six months, and a few other tests thrown in as deemed necessary by my oncologist and/or cardiologist.  For instance, this past Wednesday I had two ultrasounds because my most recent CT scan shows cysts on my ovaries (probably nothing to worry about) and to look for maybe an abscess or something going on in my abdomen.  I will have another CT scan in two weeks (eight weeks after my previous CT scan) to see if the antibiotic worked on whatever is showing in my left lung (may it NOT be cancer coming back).

This is me at a previous CT scan, getting ready to go inside:


That's it in a nutshell.  Scheduling these things with the least impact on my work, my husband's work, can be a nightmare. A typical Thursday infusion/oncology appointment usually has my oncology appointment at the Lombardi Cancer Center at 9:00am or 9:30am, with infusion scheduled in the Ground Bles Infusion Center at 10:30am or 11:00am.  This has us leaving the house at 7:00 or 7:30, depending on what traffic looks like.  Both of these places are within Georgetown Hospital, but they're definitely not next door to each other.  Sometimes I'm late for infusion, sometimes early, depending on how the clinic is running with my oncology appointment.  You would think that I'd be out of there by noon, or at least 12:30, with an 11:00am appointment, right?  Nope.  They don't order the meds until you check in at the infusion center.  Sometimes it seems to come down quickly, sometimes we wait for an hour.  Usually we're lucky and driving out of the parking lot so as to beat any traffic going home.  We've found we have to be out by 2:30 for that.

That's a typical infusion day.  Usually when I have a CT scan, I'm lucky enough to get it scheduled on a day I have something else already scheduled.  When I have a bone scan, it's always in conjunction with a CT scan.  I'll have my port accessed at the infusion center, to up to Nuclear Medicine to have the bone scan contrast injected, go downstairs to Radiology to drink the contrast for the CT scan, have the CT scan itself done, have lunch (because there's a specific time frame from when the bone scan contrast is injected and the actual scan being done), then head back to Nuclear Medicine for the bone scan.  It's all very tiring, really, even though I really just lay there, in between walking all over the hospital.  ;)

This past Wednesday, I managed to fit in four appointments, and reschedule two others that were on separate days to both be on the same day, thereby taking one day less off from work.  Wednesday, I had an ultrasound scheduled for 8:00am, another ultrasound scheduled for 11:00am (I tried to scheduled them back to back, but the scheduler said that each one would take an hour and there should be a break in between.)  Figuring in time for the appointments possibly running late and lunch, my echocardiogram was scheduled for 3:00pm.  Here's what Wednesday actually looked like:

6:00am leave the house (appointment is at 8:00am, but Metro announced the day before that the subway system would be shut down that day for the first time.  Ever.)  Traffic was stop-and-go from midway down 210 until we passed the 12th Street Tunnel.
8:15am arrival at Radiology for ultrasounds, taken back within about ten minutes.  Ultrasound tech said she could combine both tests and it should only take about 45 minutes.  Yay!  Here's me waiting for her to come in and do the tests:
Having tons of extra time until my echo, we went to Cardiology to see if my cardiologist happened to have any openings, as I had an appointment scheduled for this coming Wednesday with her.  As luck would have it, she was not there at all.   Time for Plan B (10:15 entry below).  While we were there in Cardiology, I rescheduled my appointment to April 20, with hopes to reschedule my April 21 CT scan also to the 20th.  On the way down to the infusion center, we stopped back at Radiology to see if we could reschedule that CT scan.  We could, we did, and that's two days consolidated into one.  One less day for us both to take off from work.
10:15am arrival at Ground Bles Infusion Center to see if they can fit me in, as my next infusion was scheduled for the following Saturday.  My usual day is Thursday, but I can go three days before or three days after.  I go on Thursdays when I see my oncologist, and on Saturdays when I don't.  We figured that, while we were there....  They happened to be slow, so they were able to fit me in, and cancel Saturday.  One less day for Jimmy to take off of work.  :)
11:15am taken back to infusion chair, vitals taken, port accessed, saline started, then Jimmy went to the small carryout in the building to get lunch (neither of us had had breakfast).
11:50am Herceptin started.
12:20pm Perjeta started.
12:50pm Infusion done, port de-accessed.
1:10pm Arrival at cardiology (different cardiology -- where the tests are done, not where the doctors are) for 3:00pm echocardiogram, to see if they could take me early.  If not, I had my knitting with me, and Jimmy had his phone (hospital has free WiFi).  They, too, were able to fit me in.  Everyone there is so nice!
Here's a picture of the monitor during the echo.  That's my heart:


2:00pm Done and out.  Home before 3:30. 

Now, Wednesday was not the norm.  Normally I'll have two appointments on a single day.  Those days seem just as long and tiring.

So that, my friends, is a day in the life.  It's quite a different life than I had just over a year ago.  Definitely a new normal, and quite and adjustment to make.


Sunday, March 13, 2016

Walking away a winner....

When I started seeing my cardiologist, she told me she wanted me to start walking.  Interval walking -- you know, walk for a time, walk faster for a few minutes, slow down, speed up, etc.  Either/or start walking up the stairs more.  Something to get my heart rate up.  So, I started walking up the stairs at home once or twice a day, in addition to walking down the stairs at work at least twice, and up them at least once, per day.  I'd have a good routine going, then I had surgery and stopped.  Started again, overdid it, stopped.  Started again, caught a cold, stopped.  Well, today I got on the treadmill.  Why the treadmill and not outside now that the weather has warmed up?  A few reasons: 
  • It's raining, so that right there would do it. 
  • The treadmill keeps me at a steady pace.  Also, I can track it, and hopefully see an improvement in time, distance, and speed as time goes on. 
  • The treadmill has something I can hold on to in case I lose my balance, which has been known to happen.  ;) 
  • I honestly wasn't quite sure how a sports bra would work without wearing the breast form.  Didn't really want to try that out in public.
I figured I would start off slow, and seeing as how tired I always am, thought I'd only last about five minutes.  I've used the Couch25K app before, and thought it would be perfect for what my cardiologist wants me to do.  So I used that.  I ended up actually walking a bit faster than I thought I would, and I actually jogged on the jogging parts (I had planned on walking faster, not jogging; I am soooo not a jogger.).  I didn't go the whole thirty minutes that it lasts, but I did last longer than I thought I would.  The first and last five minutes were a slower walk (warm-up and cool down), and the ten minutes in between alternated between 1 1/2 minute walks and 1 minute jogs. 

What surprises me is that my shoulders are sore.  I'm sure my legs will be sore tomorrow.

Here's proof:   :)


Lines from a Kathy Mattea song come to mind:
¯¯¯¯
"You nearly took everything I have
I never knew I could hurt so bad
But at least I left with every piece of this heart of mine.
I'm walking' away a winner, walkin' away from a losin' game
With my pride intact and my vision back I can say
I know where I'm going and I know I'll be alright
I'm walkin' away a winner, walkin' back into my life."    

¯¯¯¯

The whole song doesn't fit the situation, but here's a link if you want to hear the tune:


Saturday, March 5, 2016

One year....

I've been looking forward to this day for a while now, just so I could write this "one year later" post.  I'm finding it, actually, difficult, but here goes.

One year ago today, Jimmy and I sat in my surgeon's office and the world shifted.  I know that's an overused statement, but at that moment, I really felt something shift.  Emotionally, mentally, everything shifted.  At that time, we thought it was early Stage III.  We found out after the lung biopsy that it was, in fact, Stage IV.  I remember the day so clearly.  It was snowing, and everything was closed.  I was so glad that the doctor's office was open so we wouldn't have to wait any longer for the test results.  I remember pulling into the hospital parking lot and finding it mostly empty, except for a few cars and the plow.  The plow driver seemed none to happy to see another car in the lot, let me tell you.  ;)

So, we got the news (I have a previous blog post talking about that).  We drove home in the snow (you can see the progress in my facebook photo album entitled "Cancer" starting with this one).  We sat the boys down and told them.  We told my sisters and my husband's siblings.  Then I posted it on facebook for all to see.  I'm trying to link that post here, but can't seem to figure out how.  I just wanted to illustrate the outpouring of support I received that day, and every day since.

Over the past year, I've learned a few things --

Family and friends, and even some strangers, are amazing.  They say it takes a village to raise a child.  I say it also takes a village to care for someone sick.  Here's a Caringbridge post talking about that.  The same thanks hold today, and more.  It's really overwhelming to me, the amount of support we've received over the past year.  I say "we" and not "I" because, really...

...the whole family is affected when cancer hits one of them.  My husband was forced into the primary caregiver role.  All of a sudden, it was like he was a single parent to two teenagers and a toddler.  Our teenagers became more independent (which is a good thing really), and really stepped up.  The 18 year old planned, shopped for, and prepared quite a few meals.  The 14 year old came every time I called for him.  My sisters took time out of their lives to spend time with me when I needed them here.  My husband's brothers and sisters, too, and their families, have been here for whatever we've needed.   Everyone is affected.  It's not just cancer, either.  I've also learned that...

...everybody has something.  Once I made my diagnosis public, in addition to the support, I heard from quite a few of my friends with the struggles that they go through.  Some have been through the hell that is chemo and offered advice.  Some have been through mastectomy surgery and offered advice.  Others are living with their own chronic illnesses, some on the same or similar medications I'm on, and offered advice.  All offered advice, a shoulder to cry on, tips on handling the situation, the surgery, the medication, the new way of life, all offered someone to commiserate with.  Let me tell you -- everybody has something.  You may not know it, you may not be able to see it, but everybody has something.  Be kind.  Always. 

I've learned that Stage IV cancer patients are treated somewhat differently than early stagers.  I am a member of a few facebook support groups.  I've found that in some of these groups, questions asked and concerns written about by Stage IV ladies can be scary to the early stage ladies.  I've found that people are uncomfortable with talking about Stage IV.  It's scary.  It's not a pretty pink ribbon-wrapped package.  It's not going to go away.  It will be with my all of my days.  Don't get me wrong -- I love pink.  I will wear the pink ribbon. I am, however, under no illusions that my cancer will be cured.  It is Stage IV, after all.  If you'd like more information on Stage IV breast cancer, and how to swing the pendulum from awareness (because, frankly, we are all aware) to research, take a look at metavivor.org.

I've learned to take pleasure in the everyday, even the mundane.  This week I was able to make dinner twice for my family (you may have seen facebook posts about that), and I was so excited about it!  I did need help, but I was still so proud of myself.  I pretty regularly do the dishes.  I love seeing the dog catch the bright orange ball I throw for him.  Although I don't knit quite so much anymore, or maybe because I don't knit quite so much anymore, I seem to enjoy it more.  It seems more relaxing.  Sometimes I wish I didn't have to work anymore (spending the hours I have the most energy at work), and then the one of the classes does something to make me glad I'm there.  There are so many other things.  Enjoy the little things in life, not just the huge things.

I've learned that being positive is a good thing, but there can also be an excess.  No one can be positive 24/7.  It's okay to be sad.  It's okay to cry about your situation.  It's all okay.  I think everyone should watch the movie "Inside Out".  That's a great message.  In conjunction with this, I've learned that Xanax is a good thing.  ;)

I've learned that bouncing back after chemo and surgery is ridiculously hard.  I thought I'd be back to my old self by now.  I've learned that staying awake until 9pm without having taken an afternoon nap is quite a feat.

To those of you who read my blog, and can get through the disjointedness, I thank you.  To those of you who like all of my facebook posts, I see you there.  I thank you.  To those of you who I haven't seen in awhile, I know you're there.  I thank you.

On that note, it's nap time.  Hubby and I have a date at a winery later.  ;)

Wednesday, March 2, 2016

Stronger Every Day?

I've made a few posts on my facebook page with the tag #strongereveryday.  It's usually when I feel especially well, comparatively.  Sometimes it's when I walk up the stairs at work at least once, and/or down them at least three times.  I'm trying to build that up so I can go back to using the stairs all the time, as opposed to the elevator (to be honest with you, I'm more afraid of losing my balance on the way down than losing my breath on the way up).  Sometimes it's when I actually venture out of the house for something besides work or medical tests/treatments.  Those are the times I get to spend some fun times with my husband.  Sometimes its when I spend the time between work and dinner not napping.  Sometimes I'll spend that not napping window of time knitting, sometimes reading (when I'm too tired to knit, which is often), sometimes playing with the dog, and I'll confess, facebook games (Yahtzee and Inside Out are my go-tos these days, as well as the Trivia Crack challenge a friend includes me in when she does them).   I also spend some of that not napping time with my boys.


Last night I endeavored to take that #strongereveryday to the next level, and cook dinner.  I was so excited.  It was a simple dinner, really, piece of cake.  It ended up me helping David cook dinner.  Which was a big deal.  David and I making dinner instead of Jimmy and/or Jimmy.  It was nice to give them both a break.  Because I couldn't, David had to get out the heavy frying pan and put it on the stove.  He had to get the big bottle of vegetable oil (we buy from BJs) and pour some in.  He, because he wanted to continue, put the pork chops in the frying pan.  He got out the two smaller saucepans we needed (the drawer under the stove is too low for me now; I'll just topple on over and, well, nobody wants to see that).  He pretty much finished up, making the rice, heating up the cream of mushroom soup to go over the pork chops, and getting the frozen vegetables and preparing them.  I was able to, slowly and carefully, pull down four plates from the cabinet.  They're heavy.  Since I had transferred the pork chops out of the frying pan into a smaller one (to get them out of the grease and pour the cream of mushroom soup on them to simmer a bit), I was able to get the frying pan over to the plates; easier to serve.  My dear husband and David took over from there, serving the food.  I got a bit emotional when Jimmy didn't come down for this fabulous dinner I'd prepared.  He wasn't feeling well and had never planned on coming down for dinner, but I misunderstood and had been expecting everyone to sit at the table together.


What's my point here?  I'm trying to get stronger every day, physically and emotionally.  Last's night dinner set me back a peg or two with both of those.


On one hand, I think "It's been since August that I had my chemo, and September since I had my surgery -- I should be back to 100% by now."  The problem is, though, that I'm not.  I hear from women on the facebook support groups say that chemo can affect you for a few years after it's done (confirmed with my doctors).  I also know that one of the side effects of the daily medication I'm on is fatigue, and mood swings (I can cry at the drop of a hat!).  Still, I really would like to be able to lift a gosh darn frying pan without help.  I'd really like to not break down in tears when something doesn't go as I expected it to.


Lesson learned:  It's a roller coaster ride.  They'll be some bad days, they'll be some good days.  But at least there are days. 


Message to you all:  I hope that you don't see me and feel sorry for me.  Well, I'm okay with a little of that. ;)   I hope that you don't see me and think I'm milking it, acting like I feel worse than I do.  I don't.  No, no one has ever said that to me, but I sometimes wonder.... 


So, in answer to the question I get most often -- How are you doing these days? -- I'm doing as expected I guess.  Mostly I'm tired all the time.  I'm not as strong as I think I should be, physically or emotionally.  ...but I'll keep working to become #strongereveryday.

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