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.


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