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.

 

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)!

Gratitude and Joy

Every day I make sure to embrace the gratitude and joy in my day.  It’s very easy as I live in a beautiful place with the most wonderful people, and I have everything I need to sustain a truly fulfilling life.  Today my joy and gratitude is in thinking about everyone and everything that makes it possible for me to be here.  I’m thinking especially about the clinical trial I’m in.  Tomorrow we travel to Dana-Farber for my quick three week check-up (no scans).  Dan will drive, once there I’ll have blood work and an EKG, and then meet with “my” oncologist and the clinical trial research nurse.

I’ve little idea how this particular trial drug was developed, but it is one of now several targeted therapy drugs being studied for targeting ROS1 in lung cancers and other cancers.  Lorlatinib, the targeted therapy drug I’m on, hopefully does what crizontinib did for me in targeting ROS1, and then it goes where crizotinib seemed to not be able to – my brain.  In my case, my brain meninges. When you think that only 1% of lung cancer patients have ROS 1, it is mind-blowing to me that there is a clinical trial at my treatment center that is specifically designed for my situation: ROS1+ lung cancer, progression to the brain with first line of treatment.  A Study of Lorlatinib in Advanced ALK and ROS1 Rearranged Lung Cancer With CNS Metastasis in the Absence of Measurable Extracranial Lesions

I’m ever so fortunate to live close enough to Dana-Farber to be treated there. Participation in the trial is relatively easy for us.  Driving to Boston every three weeks is doable.  Clinical trials aren’t offered everywhere.   This trial isn’t available to many in my situation because they are unable to make the commitments necessary, specifically traveling to the clinic site of the trial. The Bonnie Addario Lung Cancer Foundation is working to address this problem and help to make trials more accessible for patients anywhere.  ALCF Centers of Excellence  Thank you to them for this advocacy work.

I’m so grateful for the researchers, the doctors, the patients in prior trials, and the countless others that I’ve no idea about who have and continue to contribute to this and all the clinical trials.  It gives me joy to know I am contributing to something that will help a patient in the future, whether it is living with lung cancer as a managed chronic disease through targeted therapy, immunotherapy, combination therapy, or advances in early detection or finding that real C word, cure.

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.