We’re off to see the Wizard!

For Christmas I received a family outing to see The Wizard of Oz performance in April.  All of the Camp Gramma “campers and counselors” are going!  The “givers” know I love The Wizard of Oz.  Without intending it to be so (I think), it was also a gift of hope and of a feeling, a statement, that we’re not letting this cancer interfere with our family life.

I love The Wizard of Oz – did you know that? A few weeks ago I saw that the performance was going to be about an hour away in April. I thought about getting tickets and inviting someone to go with me, but…  But I didn’t because there were too many “but”s in my way. But it’s late, but it’s expensive, but…  Honestly, I let cancer get in my way.  But someone will have to drive me.  But what if I don’t feel well?  It’s too far away (in time, not distance), I can’t spend $ on something 5 or 6 months away.  Who knows what life will be like then?  But in reality, no one knows, for anyone.

So I’m excited!  Excited to see the performance, and with all my campers!  There’ll be seven of us.  We’ll go together, and maybe we’ll go to dinner first.  It’s a school night and I know the campers will be tired, but they’re young!  And me?  I can rest the next day.

It’s a strange thing, this life with metastatic lung cancer.  Since it’s not going away, and some wonderfully talented people have figured out how to contain or control it for now, we are filled with hope and making plans – not just setting goals – making plans for events that are months away.

I remember the first time I saw The Wizard of Oz on a color television at my aunt’s home as a child.  Wow!  And, I saw Wicked on Broadway when I went with my daughter and her daughter to NYC for my oldest granddaughter’s 16th birthday.  That was spectacular, and a special outing for all of us.  This time will be special and spectacular before we even see the performance, because we are doing it.  Making memories.

Here I am – living life, feeling grateful, trying to express that gratitude, and finding joy in the everyday every day!

 

Privileged

Privilege, privileged – the word has come to my mind a lot lately as I think about my treatment and healthcare compared to others’. The “others” I speak of in this case all have access to healthcare, so I guess they too are ”privileged“: a special benefit that is available only to a particular person or group.  (macmillandictionary.com)  Many people in our world do not belong to the Access to Healthcare Club at all.

My mind begins to confuse the definitions and ways the word privilege is used as I consider my lung cancer treatment. The definition above doesn’t tell anything about the person or group, but in this case privilege feels good and not so good.

I definitely feel it is a privilege (something nice that you feel lucky to have) to have qualified for a clinical trial at Dana-Farber Cancer Institute.  It feels really nice and lucky to be there.  We work(ed) hard to get there (years of employment earning health insurance, paying fully for that health insurance now that I can no longer work, driving to Dana-Farber (250 miles one way), and on and on…  But it is a privilege that even someone WITH health insurance living in some regions of THIS country cannot access.  Clinical trials for my targeted therapy drug Lorlatinib are only available in a few places in the country. This drug targets only two very specific gene mutations/drivers(more on how cancer cell mutations happen), ALK(in 3-7% of NonSmall Cell Lung cancer) and ROS1(1-2%). We are lucky drugs are being developed for such a small number.

Today Lorlatinib may be available for Compassionate Use (Expanded Access), but it was very difficult to acquire in this manner until recently (now that it is near FDA approval.) I know this because not long ago one of the “others” with ROS1 developed resistance to crizotinib, the only FDA approved targeted therapy drug for ROS1. (Have I ever said that because of this mutation, standard treatments don’t work?) So, after crizotinib stops working, a ROS1 lung cancer patient has little hope unless she can get into a clinical trial. This patient lives in a region where there was not access to a trial.  Drive to one, fly to one you say! Not if the person is not well enough to do so or hasn’t the financial resources to do so. Maybe she doesn’t quite meet the criteria.  How about compassionate use you ask?  Not available in this case. What?!!?  Time’s running out.  In this instance, the last I knew lung cancer patient advocates began reaching out to the drug company and the ROS1 experts in an effort to acquire treatment for this patient.  I was not able to learn if help came in time.

Privilege: a special benefit that is available only to a particular person or group

I belong to a FaceBook group for ROS1 patients from all over the world.  Nearly all are lung cancer patients. We are able to share information and learn from one another.  I’ve found it immensely helpful in my search for understanding of this disease.  This group is available only to ROS1+patients and their caregivers. A privilege that is available to anyone who would need/want it, if they have internet access, and can read and understand the information.

Even those with the education, reasonable financial resources, and health care access cannot assume the privilege of receiving my level of treatment.  Lorlatinib isn’t available in all parts of the world.  And, the newest of these drugs ( Tyrosine kinase inhibitors)that treat ROS1, entrecinib, isn’t available even through clinical trial right next door in Canada, according to an “other”. (That will still make only 3 drugs, 1FDA approved, to treat ROS1, and those pesky cancer cells really know how to build resistance to the drugs.)

I know what it was like before my first targeted therapy drug.  I was dying.  I did not build resistance to it (but had brain progression).  I am privileged to be treated in a facility where I have scans regularly, where I know when I have a symptom (such as with the brain progression) it will be looked into quickly, where treatments are known and available, where a plan is ready if cancer overpowers the drug.   I know of an “other” , living in another country, who died while waiting for treatment to arrive.  I am so sorry this happened.

Without the many privileges I enjoy I wouldn’t be here, drinking tea by the Christmas tree, wood fire warming the room, still trying to sort the good and bad of the definitions of a word as it applies to my experience with healthcare.  I know the circumstances of my life (from childhood and education to the love and support of Dan and our family)  have equipped me to access the best level of treatment.  But does that mean I should be privileged, should belong to the club when “others” with the same needs are allowed to die because they can’t access the correct treatment?  A treatment that IS available, but not accessible for that person.   I can’t change the world, but gosh, at least in our country, it seems like access to known lifesaving healthcare should not be a privilege.

And, by the way, have you heard me say lately that LUNG cancer research is way underfunded?  It is the deadliest (433 Americans per day) and least funded when compared to the other common cancers.  I’m making my voice heard to my representatives, and urge others to do the same.  Oh yes, and radon is the second leading cause of lung cancer – just thought I’d get that in there.

I’m privileged to be able to serve on the Family and Patient Advisory Council of the Maine Lung Cancer Coalition MLCC.  More on this work later.

Finding joy in the everyday im my cozy home, making memories, and loving life with Dan, family, 3 little dachshunds, and 2 Nigerian dwarf goats – that’s me, living a life of 

 

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.

 

 

Radon Causes Lung cancer

Radon is the second leading cause of lung cancer.  It is easy to test your home and water. Mitigation is not difficult, not expensive, especially if you think about the alternative.

Here is a very interesting document from University of Maine that provides all the information you need (and more, but it’s interesting!):    UMaine Radon Document

Lucky to be me!

Try to imagine that you’re hiking along life’s trail, happy go lucky as can be and then you find yourself slowing to a walk and then a crawl.  That’s kind of what happened to me in the fall of 2015.  Despite the house fire recovery, things were good, and then they weren’t.

I’m lucky! For lots of reasons. I’m really grateful to the FNP or PA who saw me on that Sunday at the walk-in clinic.  She did the x-ray that led to the discovery of my lung cancer tumor.  If not for her, I’m not sure help would have come soon enough, I was crawling that slowly.  But I am so fortunate that she knew to do that x-ray that day.

And then There I was at Dana-Farber Cancer Institute barely crawling (Dan thought it was time for a wheelchair) to my radiation sessions (that were for palliative care while they were developing my treatment plan) when I found out just how lucky I really am.  I am LUCKY! My cancer, at that time already spread to my liver and pelvis, was treatable with a targeted therapy drug.  Yes, that’s right. TREATABLE!  Not sure about others, but Dan and I knew that I wasn’t going to be crawling much longer if something didn’t change, so hearing that word treatable made us feel blessed indeed.

Great Educational Reading on lung cancer, genetic mutations, target therapy treatment, and more!

Back to lucky me!!  Thanks to the testing done by Dana-Farber and Brighams it was discovered as quickly as could be that the lung cancer in my body is driven by a cell mutation called ROS1.  While ROS1 is what caused the rapid spread, it is one of a few mutations that can be battled with a targeted therapy drug that truly targets those ROS1 cancer cells and not all cells like chemotherapy does. It was available at that time for expanded access, not quite FDA approved.   And, it is a pill that you take.  I am lucky.  I was dying and in just a few days the crizotinib began to work.  I started the drug on March 2 ,2016 and check out how different my lung looked by May.  (Feb.,even after radiation on right, May on left)

IMG_2968 (1)

Told you I’m lucky!  I’ve had two years since cancer crept into my body and ROS1 slammed me. Great years filled with blessings beyond thinking. If not hiking, definitely walking at a good pace and feeling pretty darn good.

Still lucky! After 16 months on crizotinib, the cancer progressed to my brain meninges. Crizotinib does not protect the brain, so when one of those little cells sneak by…  Researchers had developed a newer drug that battles ROS1 that does fight in the brain, and I was eligible for a Phase II clinical trial at Dana-Farber.  Lucky!!! This drug too will soon be FDA approved.  It is a pill taken once per day.  Since July Lorlatinib has kept everything from the neck down looking the same in scans, and it has reduced the cancer in the meninges by 75%.  Lucky, blessed, fortunate – give me a thesaurus – I’m that.

Research doctors are working on the next line of treatment to work against ROS1 when it figures out the code for this treatment and builds resistance.  I, and so many others with acquired cell mutations such as ROS1, are SO grateful.

Saying I’m lucky implies that it’s all by chance.  I know that’s not so.  Something more than chance is at work here.  I’m grateful every moment of every day.

Update, November 16, 2017

Now that I can no longer post to carepages, I will do my updates here.  We’ll miss carepages, first introduced to us when our grandson was born at Brighams and whisked (with mom) away to Children’s where he had his first of a few heart surgeries.  He’s a very healthy, athletic eleven year old!  But then, and now, we needed a way to update and communicate easily with friends and family.  So, thanks carepage!

GREAT NEWS! Lorlatinib is working for me.  75% reduction of the cancer in my meninges!  I am having no symptoms from the cancer in my brain.  I am having some minimal side effects from the lorlatinib doing its job in my brain.  Lorlatinib is also controlling the cancer in other places of my body as well as my hero Xalkori Crizotinib did. High cholesterol is a side effect of the drug, so my Crestor has once again been increased, but I’ve been assured that this can be managed and wouldn’t be a reason to stop the lorlatinib. Whew!  So, at the lower dose from when I began, it is still effective for me!

Dan and I drove to Boston Wednesday for the Thursday appointment.  Our first test was at 6:30 AM.  We were finished for the day at 2:45 PM and then Dan had to drive home in the pouring rain.  Traffic was heavy heading out of the city, and then visibility was terrible on the highway. It got dark while still on the interstate.   We stopped for a quick dinner and break in S. Portland, Between Augusta and Belfast it was mixed precipitation. But finally at 9:20 PM we pulled into the driveway, safe and sound.  Dan’s my hero, always.  The greeting by the three little dachshunds was as wonderful and crazy as always.

We are ever so grateful to/for everyone at Dana-Farber, everyone in lung cancer research, and our family for jumping in so we can travel.

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…