Procedures and Tests, so far so good

LONG POST- NOT URGENT.  Information sharing!

Since January 3, 2016 I’ve had a few procedures and many tests (scans, MRIs mostly).  I thought it might be helpful to describe these from the perspective of a person who doesn’t really get too worked up about things like this. Me.

You can read the description of any procedure and test online, and I think that’s a pretty good idea.  I mean, how is one to know if you have any questions if you really can’t picture what’s planned?  I imagine we’ve all had the experience when the technician or doctor asks if you have any questions, and you’re still stuck on the first thing they said about what was about to happen. But, if you prefer just going with it, no need to check it out first online.  And, when you’re desperate for the information the procedure or test might provide, you may truly want to just go with it.  In either case, if you do go online to check out how the procedure is done, don’t  get stuck on the risks.  You’re going to have this done, the doctors (and you by consent) have determined that the benefits way outweigh the risks.  And seriously, in my case, it’s been a “no brainer”.  I know some of what I’ve had done can cause cancer, but I’ll take living long enough to participate in a study on that when it does catch up with me.

So I’ll try to do this chronologically, beginning with the lifesaving x-ray. The one that showed my tumor was done at a walk-in clinic on a winter Sunday afternoon.  It’s an “electromagnetic wave of high energy and very short wavelength, which is able to pass through many materials opaque to light” that’s used to take photos of what you can’t see. You lie on the table, the tech leaves the room (to protect themselves) and click, click – that’s it!  Quick, easy, painless, and oh so informative.  Why, it can find broken bones and lung tumors!

Got a “cough, cough” for months?  Ask for an x-ray just to be sure it’s not a tumor.  Low dose CT scans are available too, especially if you are “at risk” for lung cancer.

CT scan (sometimes called CAT scan) “A computerized tomography (CT) scan combines a series of X-ray images taken from different angles and uses computer processing to create cross-sectional images, or slices, of the bones, blood vessels and soft tissues inside your body. CT scan images provide more detailed information than plain X-rays do.” (Mayo Clinic)  Well, I guess it’s just a fancy x-ray that gives more detailed information. Mine are all “with contrast” – an intravenous and/or an oral  “dye” is used to enhance the scan/x-ray. My first one in this journey was at my local hospital.

I’ve had many CT scans of my chest and abdomen at a few different clinics/hospitals.  At Dana-Farber they trust you to come clothed in “NO metal” clothing.  Sometimes they ask about underwire bras, zippers, or pocket contents, just to be sure and safe.   Here’s how my CT scan appointments have gone.  Nothing to eat, and only clear liquids for two hours before.  If you are having oral contrast and haven’t gotten it ahead of time, you arrive an hour early, check in and get your tasty drink. (It’s not so bad, sometimes seems like a lot.)  At some point a nurse/tech will take you to put in an intravenous catheter (unless you have a port) in your arm/hand.  It is a small, flexible tube put into the vein so the contrast can be Putin or blood can be drawn out.  The vein inside my right elbow is great, so mine go there, get taped on, wrapped, and are used for the CT and any other tests, blood draws, etc. that day.  Nearly painless, just a little jab.  Next! At some places I’ve had to undress, leaving just my underwear, socks, and shoes on, and put on a johnny (short gown fastened in the back) for the scan. Then you go into the scan room (which is probably cold) and lie on a table/bed with a big machine shaped like a donut around it.  It’s very open.  You lie still and move to the donut, hold your breath for about three seconds, and move out.  A couple pictures and then the technician comes back in to start the IV contrast,  He/ she returns to safety, two more pics, and then they flush out the IV or take it out if you don’t need it again that day, and you’re on way. Drink lots of water that day to flush the contrast out of your system!

This explanation from radiology info.org is great for understanding CT scan, MRI, and PET scan process.  “The CT scanner is typically a large, box-like machine with a hole, or short tunnel, in the center. You will lie on a narrow examination table that slides into and out of this tunnel. Rotating around you, the x-ray tube and electronic x-ray detectors are located opposite each other in a ring, called a gantry. The computer workstation that processes the imaging information is located in a separate control room, where the technologist operates the scanner and monitors your examination in direct visual contact and usually with the ability to hear and talk to you with the use of a speaker and microphone.”

Bronchoscopy That first CT confirmed that I had a tumor, so I went to a pulmonologist (lung specialist) who decided to do a bronchoscopy: “an endoscopic technique of visualizing the inside of the airways for diagnostic and therapeutic purposes. An instrument (bronchoscope) is inserted into the airways, usually through the nose or mouth.”  This was a relatively easy (for me) day surgery procedure.  I was given something for anesthesia – “In the practice of medicine anesthesia or anaesthesia is a state of temporary induced loss of sensation or awareness.” ( I don’t remember this, I guess it worked!)

A tube, with an instrument in a smaller tube inside the larger tube, was put in my mouth and into my lung.  The doctor used the instrument to look around and to snip some tumor tissue for pathology.  I think this process took less than an hour.  I woke up in recovery, was told I may have a sore throat and to call if any coughing up blood, and home I went. After sleeping off the anesthesia, I was fine (from that anyway), no sore throat even.

The pathology report took many, many  days (from this facility anyway), and the sample ended up being sent on to Brigham and Women’s because it was “inconclusive, rare, abnormal” and need further examination.  (What?!?  Now you begin to understand why we took ourselves to Boston.)

After seeing the tumor, the pulmonologist decided it was a good idea to have a Brain MRI and  PET scan (To see if I “lit up” anywhere else. Places where there are cellular changes “light up” in the image.)

Brain MRI (Magnetic Resonance Imaging) “Magnetic resonance imaging (MRI) of the head uses a powerful magnetic field, radio waves and a computer to produce detailed pictures of the brain and other cranial structures that are clearer and more detailed than other imaging methods. This exam does not use ionizing radiation and may require an injection of a contrast material called gadolinium, which is less likely to cause an allergic reaction than iodinated contrast material.” (compared to CT scan with contrast) radiology info.org

I’ve had about 10 of these now, so here’s a description from an earlier post, with additional thoughts. “This means taking off everything but my undies, putting on a johnny, having an IV put in . Then into the cold room, and getting up on the table in the right spot, cushions beside my ears, a “hockey mask” clamped over my face, and into the tube I slide. Oh yes, you can choose music or earplugs to slightly deafen the sound.  I choose earplugs now.  (Music on that first one.) And, you are given a bulb to squeeze if you need anything (because of course the techs are safe away in another room watching you). The techs talk some to let you know how much longer, etc.  Probably if you’re not still, they tell you.   Halfway through I’m slid out to put the contrast dye in my IV. After listening to some pretty strange and very repetitive noises for 40 minutes, I get out of the tube, have the IV removed, dress, and go.” Some people have difficulty with the idea and feeling of having the open mask over their face, the closeness of the “tube”, and the noise.  Luckily for me, I don’t.  I can only say that the techs are just a squeeze away, however snug it is when you go in won’t get any snugger, focusing on breathing slowly is calming.  I count the repetitions of the different sounds to pass the time!

PET scan (Positron Emission Tomography) “Positron emission tomography (PET) uses small amounts of radioactive materials called radiotracers, a special camera and a computer to help evaluate your organ and tissue functions. By identifying body changes at the cellular level, PET may detect the early onset of disease before it is evident on other imaging tests.”radiology info.org  I’ve only had one of these.

For a PET scan you can have nothing to eat and only clear liquids for a few hours before. You can wear no jewelry, and they’ll ask about metal in your body (true for all scans, MRIs).  You CAN leave your wedding ring on! You are asked to remove all clothing except undies and put on a johnny.  This procedure requires an  IV for the radiotracer.    The radiotracer is injected and you need to just sit and relax for about an hour, I guess while it travels through your body. Then you go into the room for the scan, and as  I remember,  it is like a CT scan (above)  from there, except it looks at your whole body (not your brain) instead of a specific area.

Because the PET scan showed enhancement in my liver, one of the first things that happened after I went to Dana Farber was a liver biopsy to make sure that it was lung cancer metastasized to my liver and not another cancer or something else.

Liver Biopsy This procedure was much easier than I thought it would be. It is done as outpatient/day surgery. I had mine at Brighams. No food or drink after midnight, undressed/wear johnny, IV put in.  For this I was sedated, but fully aware. ( If I had been too nervous, talkative, agitated- I’m sure with the push of a button, I’d have been asleep.)

The liver biopsy is a needle biopsy.  The procedure is ultrasound guided. “Ultrasound imaging uses sound waves to produce pictures of the inside of the body.  After you are positioned on the examination table, the radiologist (a physician specifically trained to supervise and interpret radiology examinations) or sonographer will apply a warm water-based gel to the area of the body being studied. The gel will help the transducer make secure contact with the body and eliminate air pockets between the transducer and the skin that can block the sound waves from passing into your body. The transducer is placed on the body and moved back and forth over the area of interest until the desired images are captured.” radiology info.org

So, while you are lying on your back, the doctor doing the procedure is standing very close to your right side, and does the above process to your abdomen to get a clear look at your liver.  Then he/she cleans the area (just below the right rib cage) and gives you a shot or two of novocaine to numb the area.  Next he makes a small incision for the needle.  You hold your breath (no, really) while he inserts a long needle and gets what he needs, and pulls the needle out. You then go to the recovery room where you have to lie still on your right side (due to bleeding possibility) for several hours.  Then, when we were done I was tired, a little sore where the incision was, and couldn’t lift over 10 pounds for a week.  Really much easier than anticipated and quite painless.

Okay, in trying to think about what else I’ve had for procedures, I think the only other besides radiation treatment, which you can read about at length in an earlier post, is a lumbar puncture (aka spinal tap) which I needed after the cancer crept into the meninges.  This was done to see if the beast had spread into my entire central nervous system by looking for cancer cells in the spinal fluid. (The fluid that’s drawn is lab analyzed.) It is a test that isn’t too effective (reliability, 41% sensitivity), but I guess it is a simple way to look for cancer when there’s that concern and no related symptoms.

Lumbar puncture I had mine done at Dana Farber. No special prep, just changed into a gown (I like the idea of wearing a gown better than johnny.) Here’s a good description of the procedure from mayoclinc.org . “You lie on your side with your knees drawn up to your chest, or you sit and lean forward on a stable surface. These positions flex your back, widening the spaces between your vertebrae and making it easier for your doctor to insert the needle.Your back is washed with antiseptic soap or iodine and covered with a sterile sheet.

During the procedure

  • A local anesthetic is injected into your lower back to numb the puncture site before the needle is inserted. The local anesthetic will sting briefly as it’s injected.
  • A thin, hollow needle is inserted between the two lower vertebrae (lumbar region), through the spinal membrane (dura) and into the spinal canal. You may feel pressure in your back during this part of the procedure.
  • Once the needle is in place, you may be asked to change your position slightly.
  • The cerebrospinal fluid pressure is measured, a small amount of fluid is withdrawn, and the pressure is measured again. If needed, a drug or substance is injected.
  • The needle is removed, and the puncture site is covered with a bandage.”

I was sitting, leaning forward.  The doctor did spend quite a bit of time at the start tapping my spine with her hand and marking me with a marker.  She wanted to find just the right spot to slide the needle to withdraw the fluid.  While the needle was in I did feel quite a bit of pressure, but not pain.  When all done I laid still for 20 mins and then was pretty quiet for the rest of that day and evening.  I had no lingering effects from this.  And, when lab results were back – no cancer cells were found in my spinal fluid.  (Since then I’ve been put on the targeted therapy drug Lorlatinib and SHE has reduced the cancer in my meninges by 75%!

I know I’ve said this before, but it is true – I’m lucky.  An acquired cell mutation caused my cancer to take off and spread, but it is because of this that I can take a targeted therapy drug – a pill(s) once or twice per day.  The drug acts as a guided missile, attacking only those mutated cells, not all cells like chemotherapy does.  So, I know that I’ve not had some of the tests, procedures, and treatments that many lung cancer patients have to endure.  I hope that this field is changing so rapidly that soon we all will be able to treat lung cancer as a chronic disease, not a terminal one, until a cure is found.  At just under two years since diagnosis, I’m am blessed to feel well enough to enjoy life with family and friends.  Feeling joyful and filled with gratitude daily.

 

 

Road Trip!

Believe it or not, but Dan and I love our road trips to Boston every three, six, or eight weeks.

Ever since I moved out of the middle back seat (wedged between two grumpy siblings), I’ve loved road trips.  My mother-in-law, daughter, and I went on countless trips: day trips, overnight trips, shopping trips, college trips.  It didn’t matter to any of us the purpose, we just loved going together.  Once we traveled across three mountain ranges in winter in a Geo Metro to visit colleges – now that was a trip.  Dan and I always took the kids on a road trip somewhere in New England in April.  Boston, Mystic, Sturbridge, Springfield, Dinosaur State Park in Rocky Hill, CT – that was exciting to the young expert in the family.

Even before we got the cancer diagnosis, Dan and I knew that if ever we did hear those dreaded words, we would go to Dana Farber Cancer Institute, five hours away.  Road trip!  That would be the easy part – we know how to do this.  Our first road trip to Dana Farber included Dan, me, and my sister – my other caregiver.  We were on a mission, the only known was the destination.  We booked a night that quickly became a few as we jumped on the train of the cancer journey. Since then there have been countless (not really true, but I haven’t counted them) road trips to Boston.  Most of them are just the two of us (Dan and me), but some have included my sister or our son, and once we (my sister and I) made the trip without Dan. Early on, for some I was pretty sick and spent the drive sleeping, so I “missed” those trips.  After trying a couple of routes and a couple of different hotels, we’ve settled on what works for us.  We’re lucky that we’ve got a good car for traveling, and the funds for gas, an overnight stay, and meals.

Road trip!  Let’s enjoy it.  Enjoy it?  Two days of being on the road and at the hospital? (We don’t feel we can take more time away and sightsee, etc. because our three little dachshunds and goats miss us!)  But, enjoy it knowing that it’s traveling and a day of tests and appointments?  Really?  Well, why not? So we do!  We’ve got it all down. My appointments are on a schedule (8 weeks, 3 weeks, or 6 weeks apart).  Our suitcase stays packed with the extra change of clothes, travel toiletries,  and coffee and tea supplies.  I try to remember to book our room several weeks ahead. Our daughter is alerted of the dates for pet care.  The day before the road trip I finish the packing.  And then we’re off!

Just imagine having five hours of uninterrupted time with your best friend!  Heavenly.  What would it have been like years ago if someone had given the two of us “all expenses paid” trips every few weeks?  Heavenly!  Well, we have this road trip we have to do and pay for, so why not look beyond the reason?  We spend the drive time talking, and even though we’ve been together over 40 years, we love to just talk, about anything and everything. When we feel like stopping to eat or take a break we do. Now that we have our favorite route, there’s always different animals, seasonal changes, and such to notice.   Like turkeys in Brookline.  True story. They live amongst the most beautiful homes, right in the city. And then there’s Dan’s favorite little school to look for, a childcare/preschool.  Often the children will be out with Mr. Rope on the sidewalk in Boston, just like my daycare children when we walked around Blue Hill 30+ years ago. (Just like and so just not like!)

Then we arrive, usually mid to late afternoon.  (Sometimes we leave really early for an afternoon appointment, but usually we get  there one day for an early morning appointment the next day.) We park in the hotel parking garage, relieved to not have to take the car out again that day. We check in and have a cup of tea and a little rest. Pretty nice!  Watch a little TV or watch the city streets out the window.  Interesting.  Then we decide where to eat dinner.  Choices are numerous, especially with delivery, but we’re creatures of habit, so we choose between the hotel restaurant and the Italian restaurant near Children’s Hospital.  Almost every time we go to the Italian restaurant we are seated in the same spot. No joke. Corner booth. What is it about us that makes this happen? Maybe we look like hicks from Maine. Or weary hospital visitors. But I prefer to think we look like lovers wanting to be left alone to stare dreamily into each other’s eyes.  After dinner, on the walk back, is when we do our people-watching.  It’s always interesting to see all the people rushing to their destination, never stopping to even nod a greeting to anyone.  Such a different world.  And then, after dinner we have until the next morning to enjoy our trip, pushing it’s true purpose from our minds.

The next morning the alarm goes off early enough for showers and packing up.  Our appointments will last long beyond checkout time.  Depending on how early we need to be at Dana Farber, we try to eat (or just Dan eats) at the food court or the cafeteria before heading to appointments.  Here’s an example of a typical appointment schedule. First drive one block to Dana Farber and park underground usually at least four levels.   6:30 AM arrive at Dana Farber D3(3rd floor) for Brain MRI. This means taking of everything but my undies, putting on a johnny, having an IV put in that will stay in for a few hours. Then into the cold room, and getting up on the table in the right spot, cushions beside my ears, a “hockey mask” clamped over my face, and into the tube I slide. Halfway through I’m slid out to put the contrast dye in my IV. After listening to some pretty strange and very repetitive noises, I get out, dress, and go find Dan.  Dan waits the 50 mins or so (reading,  texting, looking up sports stuff on his phone).  As soon as I’m out we rush to the elevator to head down to floor L1 (lower level, underground) for a 7:40 AM appointment.  We are there for a while. That appointment starts with a blood draw (from the IV they put in for the Brain MRI), followed by a bottle of the most delicious drink that I must drink in 30 minutes. Wait for my turn.  Then the CT scans of my chest and abdomen.  As long as I wear no metal, I can keep my clothes on, no johnny! Those scans are quick. Lie on the table, a couple of scans, inject the contrast dye into my IV, two more scans, and off I go, with a reminder to drink lots of water.  Dan, he’s been waiting.  But during the time I’m drinking the stuff, we’re enjoying our time, talking about home, something in a magazine, just talking. (We’ve figured out that we both just want to be together, regardless of the circumstance or situation – whatever it is, we’re together!)  After that appointment is done (takes 2 hours total sometimes), we check to see if there’s time to stop at the cafeteria on for a snack (I’ve probably not had breakfast) before heading to the 10th floor where thoracic oncology is.  On this day we do! (This is for real in two days – we’ll see if I’m right!)  10th floor 11:00 AM EKG  This has something to do with being in the Lorlatinib clinical trial. I can’t take my med on this day until after the EKG and Dr. appointment.  For the EKG they stick electrodes all over you that read the electrical activity of your heart.  The EKG is followed by “taking vitals” (blood pressure, temp, weight, O2, heart rate). Then we wait for the appointment with the doctor, research nurse, and program coordinator, scheduled for 11:30AM.  We decided a long time ago that we would never grumble if appointments at DF didn’t happen when scheduled.  It runs very efficiently compared to other medical facilities we’ve experienced.  If our appointment is late we know it is because another patient or family needed their time.  We can wait.  We are grateful to be there.  If all is well with the morning’s tests, the appointment is really just a check-in about side effects and symptoms.  When it is over we have our last stop at the pharmacy on floor 2 to wait for the medication (one cycle/3 weeks’ worth only). Finally we’re on the parking elevator headed down to the floor that we now always remember we parked on.  If lucky on this day that starts at 6:30 AM, we’ll be on the road again by 1:30 PM.

That was one long paragraph! Well I thought about writing it as one very long run on sentence.  For me, that is how it feels. Nonstop.  No time to take a breath, even with the waiting we might do.

And then Dan drives us home.  Very long day for him.

Once out of the city we talk about the appointment and I send texts to let the “kids” know how it went.  Then we decide when/where to stop to eat, fill up with gas, etc.  I try to stay awake to keep Dan company – it’s the least I can do for my chauffeur/caregiver who won’t let me drive.  Dan calls it Driving Miss Rinnie!  All I know is that he must truly love me.

Five hours later we pull into the driveway, hearing a chorus from all sides of dachshund barks and howls mixed with the bleating of Naughty Dottie and her sidekick Matilda.  Home. Together.

Three weeks later…

cancer Stinks!

There are words I intensely dislike, and so I don’t use them.  But, that’s not what’s happening here in this title.  What I really mean to say is that cancer stinks, yup it smells really bad. When I was the most ill, everything that came out of me (in any way) smelled REALLY awful.  My breath, my sweat, my flatulence, … everything.  Not that body odors are usually sweet smelling, but I’ve never been a particularly stinky person.  (Well, the me before cancer I mean.)

This all came rushing back to me this weekend when I was ill.  I’m much better now, but I had some virus going around with everything from body aches to diarrhea.  And back came the stink full force!  I know it wasn’t my imagination, it was the same odor, the cancer stink.  Now I’m not saying my illness this weekend was cancer related, but it smelled the same.  Probably no research on this and now that I’m better I smell better!

One cancer stink doesn’t really go away – the flatulence one.  I know everyone’s toots stink, but cancer toots top ’em all.  Don’t believe me?  You could ask Dan or my grandkids, but they might be too polite or kindhearted to answer (even though we joke about it). Just ask my dogs.  Especially the two that sleep under the covers, against me.  You get the picture.  My dogs are very forgiving.  cancer stinks.

When I was first diagnosed I remember apologizing to Dr. Gandhi for my exceptionally stinky sweat.  She was the one who confirmed for me that it was cancer stink.  On that day I was too busy trying to stay alive to spend more time on the topic with her, but I wish I could.  (She has since left Dana Farber.)

I know I’ve read that dogs have smelled their owner’s cancer before diagnosis.  I’m quite sure my dog Rusty diagnosed me way before anyone else – he knew how sick I was before we realized it – maybe it was the cancer stink.  He was very attentive this weekend, so maybe he smelled the cancer stink too.

All I know for sure on this one is that cancer STINKS!

 

 

Before cancer Me, Living with cancer ME

This is a rambling post.  I’ve worked on it off and on for a few days, when I wasn’t too busy making pickles or watching soccer.  It makes little sense to me, but maybe it will to someone else or someone someday or me someday.

Sometimes I feel as though I’ve had two separate lives – the one that lasted 58 years and two months, and the one that I’ve lived since our house fire.  I use that date of the house fire instead of my diagnosis date when I think about this because that’s when I began to feel ill.  Had the cancer not been creeping in, and then racing through my body, I’m quite sure we would have recovered from the house fire just fine. But it did, and we didn’t, not fully.

Here’s what got me thinking about this today.  Another lung cancer survivor posted this question: “Have you ever thought about taking your next breath?”  My response: “Top of Mt Kilimanjaro 2012, and lying in a bed in Boston before my targeted therapy drug 2016. Two very different experiences. ” That response kind of shook me up.  Huh..  Wow.  That’s so much more than the highs and lows of one’s life.  It is two different lives.

But not really two lives, it can’t be, because all the conditions around us are the same as they’ve always been, and most of the time everyone around us does what they’ve always done or even moves on. So, what then?  One life interrupted?  No, it’s not like my life is on hold and will return to what it was.  It’s a really weird phenomenon perhaps.  You’re going along with all of life’s ups and downs that are expected as one moves through “middle age”, your house fills with smoke, you get diagnosed with metastatic lung cancer,  you’re really, really sick, and you live.  And you keep on living. But not the same life and now you have to figure out what to do in this life.

In that other life, if we’d had a house fire we would have replaced all the backpacking and camping gear because we would have used it.  In that life we had plans, and the fire would have been an interruption.  Plans that won’t be realized in this life, because it’s not the same life.  In this life we’re making the plans we should have made in the other life, and “getting our affairs in order”.  Important stuff, but not the same as the plans we were making in the other life, plans that were months in the making, that took us to new places, climbing to new heights or depths in the case of Grand Canyon.

I’m not complaining.  I’m REALLY glad to keep living in this life.  It’s just weird.  No time ago, in that life, a few of us were going to the Y doing a daily workout that I intensely disliked, but that I could do, and it included hundreds of things like burpees, squats, lunges, sit-ups.  In this life I had radiation to my lung, and it caused fibrosis in that lung (along with other nasty things ).  In this life, I’m doing squats from a chair and push-ups against the counter, and I’m huffing and puffing. I walk 20 minutes and get to a hill, and… huff and puff.   But, I’m doing it – I couldn’t when I was really sick – and I know it will make me stronger.

In this life our plans revolve around trips to Dana Farber, and the news we hear there.  Planning for months for something exciting in the future just doesn’t make sense, but maybe it will. Maybe.  Hasn’t yet.  In this life we’re not yet comfortable with knowing what next week may bring, let alone make plans for months from now.  But that’s not to say that I don’t have goals and milestones to reach.  Sure I do!  Grandchildren provide so many opportunities.  Our future is filled with such events that I expect to attend.  Complicated and weird, plan, but don’t make plans, or make plans, but don’t plan on it.

This afternoon I felt that I was in my old life, cheering away at a soccer game.  And then, at game’s end, I pushed myself up from the chair that I should have just hopped up from.  Oh yeah, right. New life, new rules.  Huff and puff back to the car.  Not complaining.  I’m alive and very active, all things considered.  And my plan?  Keep on getting stronger and polepole breathe, wherever I may be.

In this new life I’ve recently gone to my first horse show and I met a very sweet praying mantis in the garden, and last year I became mom to two Nigerian goats Matilda and Dottie.  Things that didn’t happen in my old life. I am happy and have purpose in this new life.  Weird.  polepole breathe!

Too busy making pickles to worry about dying

For someone with a terminal disease who statistically shouldn’t be here, I don’t think I spend much time thinking about dying.  It doesn’t upset me to think about dying, but I’m really much more focused on living.  I’m way too busy to spend much time on the negative “what ifs” of this journey.

You see, I’ve just been given this wonderful opportunity to spend almost all of my days doing whatever it is that I choose to do.  While I may not be well enough to do everything I may enjoy or want to do or sometimes think I need to do, there is so much I CAN do.  Thanks to the doctors at Dana Farber and the clinical trial targeted therapy drug Lorlatinib, I feel quite well.

So instead of taking me down rapidly as this cancer named ROS1+ intended to do, it has provided opportunities that I may not have had or would not have taken advantage of.    These opportunities are both tangible and intangible, and infinite I imagine.  And so now a new path on the journey has just begun.

It began on that first day of school when it seemed like everyone else was going somewhere and I was not.  No real plan, no real reason to do anything in particular.  Every day could be a new adventure.  I could read all day.  That’s very satisfying.  I could sleep all day.  No, not unless I’m very tired.  Or, I could bake! Oh dear, we’ve just completely stopped eating sugar, and are reducing how much wheat we eat.  No, no baking for now.  Well, how about making pickles? Haven’t done that for years and we’ve still plenty of veggies.  Pickles it is.

Pickle making is science and art combined, a beautiful experiment each and every time, right up to the moment your guinea pigs (children, grandchildren, and other willing relatives) take the first taste.  Since I started making pickles a few weeks ago I’ve made sour cucumber, garlic dill cucumber, bread and butter cucumber, ripe cucumber, garlic rosemary tomato, garlic dill summer squash, and bread and butter summer squash.  Yup, it’s true.  I’ve been making pickles!  I’ve used tried and true recipes passed down from my grandmother or Dan’s mom, and ones I’ve found online.  Some have been quite popular, others not so much, but all have found a home.IMG_2526.JPG

Now pickle making isn’t the only opportunity I’ve taken advantage of.  I’m part of a trio (and that number may grow any day now) that goes on NOW WE CAN adventures.  Now we can, and so we are!  We’ve traveled near and far (nah, not really far), so far going to the Orono Bog Boardwalk, Common Ground Fair, and Nervous Nellie’s.  Just the names make you know we had fun! Here’s some proof!OLYMPUS DIGITAL CAMERAIMG_252822046080_10211986642014460_7954483629869582552_n

And then there’s the hundreds of soccer and baseball games I’ve been to this fall.  Last year cancer kept me from going to many of the kids’ games, but now that cancer keeps me from working, and I’ve started Lorlatinib, I have energy enough to go.  So, go we do!

And on and on it goes!  None of us know what may happen in life, and I certainly never know what news the next scan  or MRI may bring on this cancer journey, but right now I’m just too busy finding joy in the everyday things of life to worry about dying!

 

 

Do you have lungs?

Spread the word – if you have lungs, you can get lung cancer.  And, it creeps up on you, disguised as anything but lung cancer.  At least that must be what it does, because so many of us are diagnosed at the metastatic stage.  Why health care professionals don’t think of lung cancer when seeing a patient with symptoms such as a little cough cough that won’t go away, I just don’t know.  So spread the word.  Pay attention to your body.  Be demanding of your PCP.

In an attempt to spread the word, I was interviewed by a local paper.  Below is a link to that article and then the text of a letter to the editor that I sent as a follow-up.

Interview of me

Letter to Editor, Weekly Packet, Sept. 2017

Thank you to Monique Labbe for her thoughtful article on an unexpected turn in my life, lung cancer.  Ms. Labbe conducted a kind, compassionate interview on a difficult topic, while surrounded by the laughter and play of several nine to eleven year olds.

I’ve immersed myself in learning on this topic.  There are a few important “take aways” that I believe every breathing person should know:

  1. If you have lungs, you can get lung cancer.  The stigma associated with lung cancer and smoking impacts lung cancer education and research funding.  It also causes us to ignore the subtle symptoms, leading to many being diagnosed only when the cancer is metastatic.
  1. Lung cancer kills more women yearly than breast, uterine, and ovarian cancer combined.  For more information about lung cancer patient support and advocacy visit the Bonnie Addario Lung Cancer Foundation lungcancerfoundation.org .
  1. When you have a tumor biopsy, ask for genomic testing.  If a cell mutation,  a genetic driver is found, your oncology team may be able to treat your cancer with a targeted therapy, instead of the cancer with a more general treatment plan.
  1. Don’t be afraid of clinical trials.  This field of research is moving at an amazing pace.  Being a part of the research gives one hope, for oneself and the future.
  1. Cancer (any chronic disease) impacts more than the patient. It seems unavoidable that it takes an incredible toll, financially and more so emotionally, on the entire family.  Caregivers need support perhaps even more than the patient on this rollercoaster of a journey. 

I’m very grateful that I’m able to be treated at Dana-Farber Cancer Institute, where I’m currently in a clinical trial studying a targeted therapy drug that treats ROS1+ lung cancer that has progressed to the brain (in my case brain meninges). We’re hopeful that it will extend my life for a very long time.  The well wishes and prayers on our behalf from so many in our community are a great source of strength.

Respectfully,

Corinne C. Pert

Symptoms, side effects, or just part of living?

Sorting out what is caused by what, and when to be concerned or not, is tougher than you might think.  For example, everyone has headaches, but headaches caused by cancer progression to the brain, at least in my case, feel different and aren’t helped by ibuprofen , Tylenol , migraine med, or acupuncture.  I knew they weren’t migraines because I used to be tormented by migraines.  That was before acupuncture! Luckily for me, the cancer headaches weren’t bad, just chronic and different – a symptom of cancer, and as the new drug attacks the cancer, they’ve resolved.

Recently I’ve been plagued by serious hand neuropathy .  Now, that could be a symptom as it is caused by the Central Nervous System , and the meninges where my cancer progressed to is part of the CNS.  But, it’s not.  It’s a side effect of my clinical trial targeted therapy drug Lorlatinib.  And, to make sure of this, I was off the drug for a week.  Yup, relief came at day two.  So now I go back on at a reduced dosage.

Other examples include my new high cholesterol (side effect of Lorlatinb), and the body aches which I think are a side effect of the statin that I’m taking for the high cholesterol ! Or, perhaps it’s just regular sore muscles from aging or going back to the Y to work out.  Not sure, but not really much of a bother.

But it is really important to pay attention to the body and the subtle differences as they provide clues as to whether something is a symptom, side effect, or “normal”.  Here’s another example – When I was on crizotinib I could count on bouts of diarrhea every four or five days.  Solution? Imodium.  With Lorlatinib I had no digestive issues, and then a few weeks into the trial I began to have bowel incontinence.  Not diarrhea.  No explanation. Scary.  Because it could mean that the cancer was in my spine and messing with nerves to bowels.  Luckily for me, the first statin drug I was on didn’t work for the cholesterol and I was taken off it.  Why luckily?  Because it was causing the bowel incontinence we think.  It stopped a few days after stopping that med.  It isn’t a known side effect of that med and the Dr. was ready to scan my spine in my next scans.  But, no more problems with that!

Another side effect of Lorlatinib that I’ve not heard a solution for is weight gain.  Now that too is part of life, but in this case it really is a side effect.  How do I know?  Because I gained 9 pounds while on this medication for nine weeks, and I’ve lost at least five in the week I’ve been off it.  Now, I’m hoping that with being careful about diet, along with walking and working out, that I’ll be able to control this weight gain.  But I’m not going to beat myself up over it anymore than I did the high cholesterol . Out of my control.

Today I went back on that reduced dose of Lorlatinib.  I’m really hopeful that it will not cause neuropathy at this dosage.  Two fellow ROS1ders have been through this and the lower dose worked for them.  My oncologist really pays attention to the balance of fighting the cancer and quality of life.  He was concerned about how the neuropathy was limiting what I could do and affected my sleep. We didn’t discuss options for if the lower dose still causes neuropathy.  Fingers crossed (and hope they don’t fall asleep)!

The New “Normal”

I am ever so grateful for my ROS1+ FaceBook group and my fellow ROS1ders.  They are my greatest source of information, inspiration, and support (outside of my network of family and friends).  In addition to this group, I follow several blogs of fellow lung cancer survivors, groups, and foundations.  From all of these sources I glean varied things that help me in a multitude of ways.

After we began this cancer journey, and I’d completed radiation, started Xalkori and begun to regain strength, we were finally at a place where we could stop, take a deep breath (well, Dan could – not so much me…), and reassess where we were.  That’s when we began to hear the term “New Normal”.  I know it is meant to be a helpful term, I think it’s a way of saying that you can find normalcy in this world of cancer.  I think it helps people think of managing a chronic disease or living with metastatic cancer as a change in how things are done that can actually feel normal.

I’m fairly certain my first few months, as hard as they were, were much easier than many in my condition and situation because of Dana-Farber doing the genomic testing that found my ROS1+cell mutation.  Instead of chemotherapy , after my radiation I was given a targeted therapy drug, a pill taken twice a day.  So while Xalkori(crizotinib) was shrinking the tumor, my ribs were healing, my esophagus was recovering, and I was slowly regaining strength.  That’s when we tried to embrace this concept of New Normal.  Yes, we settled into new routines and adapted to the changes quite well.  Taking a backpack with a change of clothes, Imodium, and adult wipes with me whenever I leave home has become my normal.  Taking medication regularly, something I’d managed to escape in 58 years, has become normal. But, try as hard as I can, I do not think of our everyday life as normal.

Normal: (noun) the usual, average, or typical state or condition. (adjective) conforming to a standard; usual, typical, or expected.

We (my support system) do an incredible job of living life fully and finding joy in all the normal things of life.  Yesterday Dan and I had the chance to “high five” three of our four youngest grandchildren at a soccer event.  The fourth was playing baseball (we watched him last week and likely will next week).  Upon seeing a pic of her little brother playing soccer, our eldest grandchild spoke wistfully of “those times” while at college studying.  That’s all normal!  It’s what our family does.  And, Dan and I find lots of “normalcy” in our days at camp, seeing the sun rise and set, happy and in love as we’ve been for well over forty years.

Maybe I’ve made normal a “feeling” and it really shouldn’t be.  But I refuse to think of some aspects of this journey as normal.  Especially, not my normal. Things from the complex to the very simple.  For example, hurrying up the hill.  I’m convinced it is not normal to huff and puff going up our hill.  That may be what happens to me right now, but even for me, in my condition, it isn’t going to be my normal.  You see, I’m going to get these lungs in such great shape that I can run up that hill with no puffing!  Okay, so maybe that wasn’t as simple an example as I thought.  Here’s another – that cloud that hangs over you when you have metastatic cancer and you have scans every six to eight weeks to monitor medication effectiveness or disease progression.  Now really, does anyone consider having to deal with that normal?  Yes, it is now a routine that we’ve figured out how to manage without it intruding upon everyone’s daily life too badly, but normal?

All in all, we live a pretty ordinary life. It’s an incredibly rich life, filled with joy.  That has only been enhanced by this cancer journey.   My new normal?   Being present, joyful and grateful every moment of every day!

 

The “Fight”

People talk about “fighting” cancer, “courageous battle” with cancer, and similar terms.  I don’t really see it that way for me personally.  I don’t see myself as “fighting cancer”.  There’s a real battle going on inside me, no question, but my role is somewhat removed as I see it.

cancer crept into me and grew slowly over time.  (lowercase “c” intentional) It happened while I was in the best physical condition of my adult life.  Then, somehow (I’m still not clear how), this cancer guy named ROS1+ hopped into the cancer driver’s seat.  That lazy cancer that was creeping through me took off, with ROS1+ as driver, like the energizer bunny! Zoom!  Whoosh!  Doing donuts in my left lung and heading off to the liver land.  I don’t know how that cell mutation happened, and for my purposes now, it doesn’t matter. (Figuring it out for others’ future does matter, and I hope researchers at DFCI can learn from my journey.)  All I know is I was going along my merry way, climbing mountains and playing with children, when something happened.  And that thing, at that time, was good ole ROS1, putting the pedal to the metal.  Who knows how long I had gone merrily along my way with cancer growing in my left lung hilum, where some pretty important stuff happens, or how much longer it would have taken to show up if ROS1+ hadn’t jumped in.

Okay – the “fight” and how I see it.  I believe the fight is between my medication and the cancer.  My body is where the battles take place.  The many doctors (radiologists, oncologists, neurologists, pathologists) at DFCI are monitoring and assessing all the battlefields, and making decisions based on those assessments – they’re the generals.  (Ultimately I’m Commander in Chief, but I’m a wise person and they know what they’re doing!)

The generals sent in my first hero Xalkori Crizotinib, and she was brave!  She fought back cancer and I could breathe.  My poor little left lung re- inflated! Xalkori hunted down ROS1+, tied him up, and sat on him.  (Sorry, just sounds like a male name.)  ROS1+ cancer was still for months, a year even, until finally one night as an exhausted Xalkori slept, cancer tiptoed past the Blood Brain Barrier to my meninges.  No joke, that’s how I see this! Time for the generals to put their heads together for a strategy meeting.  The outcome?  The next weapon!  Lorlatinib.  It not only protects the body like my friend Xalkori, it boldly crosses the Blood Brain Barrier, hunts down, and attacks cancer as it sneaks around and around my brain, looking for places to settle.  The generals’ plan is that Lorlatinib will cause the cancer to retreat to a point where cancer is again contained and managed, never to escape again.  Just weeks into the battle I can feel the battleground shaking.  Lorlatinib is powerful!

Now, I’m not letting myself off the hook or being passive here – I have an important role too, just not in the heat of the battle, sword to sword.  That would be too exhausting,  to be in fight mode all the time.  My job is to strengthen the fortress, to give the generals and the warriors the best support I can so they may win each battle, and so, I don’t see it as “fighting” – on my part anyway.  My work is essential to the battle, and it is both joyful and exhausting.  Believe me, I want this cancer gone, but that’s not what’s expected, so I see this as a journey.  Medically, it is managing a chronic disease. I’m in it for the long haul, a marathon, not a sprint.  Likely more battles such as the ones described above will occur in my body, maybe many.  Hopefully a time of quiet management will come soon and last a long, long time, with the ever present sentries scanning the skies, land, and oceans of this body for cancer.  I will be living life, taking the best care of my mind and body that I can, supporting the work of DFCI and its staff.

First Day of School

Today is the first day of a new school year.  And where am I?  Making garlic dill pickles and sitting on the deck here at camp, with my feet up, watching the seagulls.  Weird.  That’s how it feels.  Weird.  I shouldn’t be home, you see.  I should be at school.  In my classroom, with my students.

While cancer can’t stop some things (Camp Gramma!), it has stopped me from doing one of the things I love – teaching and learning with children every day.   Today is the first time in a very long time that I wasn’t directly impacted by the first day of school.  Why, even when I was a toddler, my older siblings left me on the first day of school.  Then, I went to school for years.  I took a six year break from school while the children were growing, and then spent years with them being in school.  While that was happening, I went back to school and became a teacher.  From there, I’ve not missed a first day of school.  That’s a longstanding tradition.  A tough one to try ignore or think of as “just another day”.  It’s THE FIRST DAY OF SCHOOL, and it means something to me.

Last year I tried to work 60% time, and I think did so quite successfully until the end of May.  I know it was important to me that I be there, and I hope my students benefited from my presence.  I appreciated my school administration’s willingness to let me job share.  I’m grateful to Andrea for being my longterm sub through my sabbatical and my illness.

So it was, in May 2017, we got confirmation that cancer had crept past my magic friend Xalkori (crizotinib) and we would need to move to the next line of treatment.  Yeah, I already knew – we’d been watching the beast creep in, and there were symptoms for a couple months, but now decisions had to be made, appointments were scheduled, “cruise control” shut off.  Time to apply for what, in the world of Maine teachers, is called “retirement disability”.

The term “retirement disability” really bothers me. It has nothing to do with retiring, and is about accessing that retirement fund for disability.  I wanted to retire on my own terms, when I was “ready”.  Retirement should be joyful! I was occupied with completing forms to giving permission to MainePers to access my medical records so that someone could judge whether I was disabled enough to qualify for benefits.  It was not the retirement I had envisioned. (I am though very grateful for having benefits to apply for, and access to health insurance.)

Back to today, the FIRST DAY OF SCHOOL.  Today, I am joyful on this first day of school.  The paperwork stuff (another story) all worked out.  I had a wonderful summer of teaching and learning with children all summer.  I am here in the place that I love for longer this fall than if I was back to school today.  And, even if it’s not every day, I know I will be with children learning and playing, either with the grandchildren or volunteering in my dear friend Kathy’s classroom.  It’s the first day of school, and I’m drinking my afternoon tea.

 

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