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…

Radiation (or Radiotherapy as it’s really called)

When I first got to Dana Farber the doctors recommended radiation for palliative care.  Palliative care is care intended to improve the quality of one’s life.  (It isn’t always during the end of life period).  At the time it was recommended, doctors were waiting for the results of genomic testing, and were very concerned about my extreme shortness of breath, coughing, and feeling of chest pressure.  My tumor was(is?) in my left lung hilum, a rather tricky spot (kenhub.com hilum info), where some important stuff happens that shouldn’t get blocked.  All we knew is that we came to Dana Farber for the best treatment and we were going to follow their advice.  We didn’t see many other options jumping out.

So, it was explained to us that to give me relief quickly, I would have “30 treatments worth” of radiation in 10 treatments.  Five days per week, two consecutive weeks.  The hope is that the tumor would shrink quickly and I would be able to breathe.  Sounded like a good plan.  Now after a month of tests we’re finally going to do something to get rid of this beast inside me.  Let’s go!

After meeting with the radiation oncologist, the next step was mapping. For the mapping I was on a table like for any scan, but there was something like an inflatable beanbag under me, that when deflated molded right around my body. In the room was a Dr. and two young technicians.  I was wearing a Johnny, but of course that didn’t really matter as they needed to access my chest.  Now I hadn’t really thought about this too much, but they needed me to be lying just as I would for every daily dose of radiation of course, and what they were mapping was my chest.  So, there were my somewhat aged, floppy breasts being ever so gently moved and set back in place while the process happened.  Luckily for me, I’m not too uncomfortable being partially nude in the medical setting, but I hadn’t put much thought into what they needed to do, or how long it would take.

Contrast dye CT (an IV for this) and lots of marker on me (here, there, and everywhere in different colors above, on, beside, and under my breasts), with a machine giving them the exact measurements of where to mark (looked like green lasers swirling around), 30 seconds of monitoring my breathing, and then my tattoos. Four tiny dots, smaller than my moles and freckles – good thing they are a different color. One above one breast, one under the other breast, and one on each side of my rib cage.

After several days of Quality Assurance testing on a dummy, there was a trial run on me.  I was put in the mold they made last week during radiation mapping (that’s what the inflatable thing was for!) and had x-rays, using the coordinates of my tattoos to make sure that what they are hitting with radiation will be what they want to target. Quite an amazing process.

The radiation machines are assigned color names.  Mine was purple, a good sign because that is my favorite color.  It was explained to me that within a few days I would likely have side effects (skin “burning”, fatigue, cough -already had one of those, soreness in my esophagus and throat, and loss of appetite.  There also may be some additional side effects months after radiation.  At that point I just wanted to breathe and feel like we were doing something, and a liver biopsy the day before starting radiation confirmed that the lung cancer was there too, so the radiation needed to be completed before beginning what we thought would be chemotherapy treatment.  (Received confirmation of the ROS 1 cell mutation during radiation and treatment would be a targeted therapy drug, but that too couldn’t happen until I recovered some from radiation.)

I ended up having 10 radiation treatments.  Each day you check in, go to the dressing room and put on your Johnny, leaving on undies, socks, and shoes, and then sit in the waiting area, completing a questionnaire on a tablet about symptoms.  Dan would wait in the waiting room where we checked in.  I seldom waited more than a few minutes and then into the treatment room, climb up on the table (a struggle because of broken ribs due to coughing), lie on my mold, and hold still while the machine hovered over me.  I think that an X-ray or scan was done each day as well.  Of course, for their safety, the technicians running the equipment are in a different room once they get you in place.  When you’re done (5 minutes later) they come back in and you’re on your way.

Over the days (even for just two weeks), you start to build relationships with the technicians and the radiology/oncology nurse that meets with you daily.  One day a technician admired my purple sneakers, and the following Monday announced that she had purchased a pair over the weekend.  (That’s what began my search for fun socks, shoes to entertain technicians when I have tests done.  Almost always you can keep your socks and shoes on when they’re looking at your top half.). The nurse was the one who kept track of  your “vitals” (stats on everything from weight to heat rate), asked about appetite and pain, and offered suggestions to either help prevent or relieve the radiation “sunburn”.  Dan would join me for the check in with the nurse.

Once a week we were scheduled to meet with the radiation oncologist.  But I think we met with him four times.  He always showed us the X-rays or scans that were done. On one visit we had just learned that I had the ROS 1 genetic driver and would go on a targeted therapy drug.  He was SO excited!  He said this meant there was a treatment that would target only the cancer, not my whole body like chemotherapy would, and it was known that it works on my mutation.  Lucky me!  He really did have us feeling like we’d won the lottery.  (And really?  On the cancer journey, we had.) Once he explained that my lung had partially collapsed, but that he hoped after radiation it would re-inflate itself. (And it did!)  He also, very sadly, told me near the end of radiation that it really had done nothing to shrink my tumor, but I would still, for months to come, likely suffer the side effects from the radiation.  He was genuinely sorry about this.

Now, what was life like during this time?  Well, Dan and I stayed at the Hope Lodge (free thanks to the American Cancer Society) in Worcester, an incredibly beautiful, old Victorian(?) home with original woodwork throughout.  We would get up early, drive to Boston, park in the Dana Farber parking garage, go up to the third floor to eat breakfast in the Dana Farber cafeteria, and head down to the below ground level where radiation takes place. This all involves quite a bit of getting in and out, up and down, and walking.  Toward the end of my treatments, Dan thought I should use a wheelchair.  We didn’t.  We did go very slowly, but we had time.  And, we had learned from Mt. Kilimanjaro – polepole (go slowly in Swahili) breathe!

Once done with radiation, unless there was another appointment, we returned to Worcester to Hope Lodge where I rested, and likely Dan watched me rest.  Our room at the Hope Lodge was upstairs (that was a known before staying there).  Once in our room we didn’t go out much because I became so fatigued from the radiation that the stairs seemed like a mountain. While there we got to know other visitors/patients and the staff, often sharing meals with them. I wish I had felt better as I would have enjoyed talking with them more.  There was a large shared kitchen with refrigerator and storage space for each patient, so most meals you prepared yourself, but each night we were there dinner was brought in or prepared by a volunteer organization or group.  Oh nice is that!  So, at dinner we ate family style. I wasn’t really able to fully appreciate or enjoy the dinners at that time, but it was truly thoughtful and there’s always something special about sharing a meal with others.

On the weekends before, between, and after radiation Dan drove us the five hours home so we could “just be home” for a day and a half before heading back again.  While home magic happened and our laundry was done and food resupplied.  My job was to rest and keep breathing.  That’s all I did.

I will always have damage from the radiation.  A few months after I had lung inflammation (pneumonitis) that needed to be treated with steroids.  The fibrosis (like scar tissue) continues to worsen even now, 21 months later.  This was a surprise to me.  I was told it could continue to have an effect, but I didn’t realize it could continue to worsen.  I think I was lucky with my esophagus, or at least so far.  Things that are quite hot (temperature) bother me going down, and I try not to eat much spicy food.  I have developed a hiatal hernia, but have no symptoms.  I’m sure all of this damage could be much worse, so I feel fortunate.

Take-aways from this part of the journey:  the experts are doing what they think and hope will work, but nothing’s a given; even when desperate, try to take time to consider pros and cons; compassionate people are everywhere you go; caregivers are lifesavers.  Always stay hopeful and strong.

 

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!

 

Whose lung cancer is this anyway?

While it is my body that is site of this chronic disease disaster, it impacts so many more in so many ways.  Even I don’t talk about it as “me”, but in a recent interview kept referring to “we”, meaning Dan and me, the “we” we’ve been since I was 16.  My body is going through the physical process and getting roughed up pretty badly by the cancer and the treatment, but the physical and emotional impact is on “us” and reaches all of our family (children, grandchildren, siblings, close friends) as well. For example,  “we” go to Boston (now every three weeks) for two days and everyone else needs to care for our dogs (3) and our goats (2), and sometimes our boats (true!). So, for us, this is “our” disease.

Throughout the early months of 2016 we were deep in learning about metastatic lung cancer.  You might think I would know about it since it is what took the lives of my father and his father.  But that was then and this is now, and now is such a better time to find yourself with this diagnosis.  We knew one thing – even though we’d never been there, for us, Dana Farber Cancer Institute is where we wanted to be treated.  So, for our family this means going to a treatment center five hours away.

On our first trip to Boston (which started at BWH due to not yet being officially diagnosed) “we” meant Dan, my sister Nada, me, and my body.  (I think I might have made hotel arrangements, but maybe Nada did – see? “We”)  After short appointment at BWH, we were referred to a next day appointment at Dana Farber. “Good, they’ll see us! Oh, now we’re staying, and what does that mean?”  Well, really it meant for me, that all the others who make up our “we” jumped into action – they already had – and just magically (to and for me) made things happen.  Mandy and children took care of two dogs, Tim and family had the other.  Thankfully, that winter was Pre-goats.  Nada took care of arrangements in Boston,  and Dan took care of me.  Me?  My head was in the game, my body was definitely not, and “we” were just trying to get me to the point/place where we could find some help and hope. Thankfully, both came quickly at Dana Farber.

I don’t know when I truly realized that our life could never be like it was before cancer.    Despite our advancing ages (ha!), WE had plans, physically active plans, and goals requiring that we be able to do things that it is unlikely my body will be able to do.  So because of our disaster that’s happening in my body, WE have adjusted those plans, set new goals.  Some of those goals have to do with treatment of course, but many are modified goals from the past.  We are ever so grateful for the things we did do together while our bodies were both healthy and strong.  Will we do backcountry backpacking in Grand Canyon again and take the grandchildren as hoped?  Nope, but my body is well enough that we could do a family trip to Grand Canyon (or anywhere we choose) and some can hike while others sightsee.

Both years since cancer became part of our family’s plans we’ve taken our family trip to Spencer Pond Camps. And for the kids I think this second year seemed pretty much like the years before cancer.  For Dan and me it is different, with more careful planning to assure that I can get the rest I need, that others do things I took care of in the past.  But, “we” are determined to do what we can while we can.

Another big way this lung cancer has changed our life is financially.  Thankfully I had very good insurance as a paid benefit through work.  But now I’m unable to work and on what in my world of  state/teacher employment is called retirement disability, and paying for that really good insurance with the very high premium while earning significantly less.  We know we will easily meet the deductible early in every year. Every time I have scans it is several thousand dollars. Our deductible and co-insurance are higher because of our choice to self-refer and go “out of network” to Dana Farber. (For us “in network” is Maine, but at least our plan will cover out of network.)    Travel, lodging, and meal expenses all add up.  Dan takes days from work as well.   We share the burden of this lung cancer in so many ways.

I am ever so grateful I have a “we” to share this burden.  I’ve met other patients who have no family close to them, who rely on friends, neighbors, or are alone.  I don’t have any understanding of what that is like.  Having this support system is what keeps me going.  I’m not going to let “us” down.  Because I know how hard everyone is working to help me,  I am determined to do everything I can both with my health and in being the best person I can be.  While I am sad, as are we all, that “we” are on this lung cancer journey, I find joy and happiness all around me everyday, and I share/spread this with the rest of “we”.  Please remember, it is essential to “give some love” to everyone on the journey, not just the patient.

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