A Place of Hope and Science

Another successful trip to https://www.dana-farber.org, one of our family’s places of great hope. After a day of scans(chest, abdomen, pelvis), bloodwork, brain MRI, and an appointment, I heard the words of hope – “Everything looks great!” Great=Stable, and stable means our Lady Lorlatinib continues to stay strong, keeping her thumb on the switch so ROS1 cannot take off and race throughout my body again. Well worth an 18 hour day, well worth the side effects, well worth making my chauffeur drive 5 hours, wait in the car, drive 6 hours (yup, hit rush hour traffic, first time since pandemic).

For the first time since beginning lorlatinib (nearly four years ago), my bad cholesterol is in the normal range. Great news! Thanks to the perseverance of my DF team, I am now taking a combination of meds that can counter this ugly side effect of lorlatinib. Three cholesterol lowering meds, each with their own job to do, working together to bring my cholesterol under control. This is important not just for me, but for the data collected on lorlatinib. If ROS1 lung cancer can someday be considered a chronic, managed disease, then the drugs to treat it have to be tolerated well by all body systems. And, of course, the drugs need to be designed so ROS1 cannot find a work around. Researchers are getting closer to this all the time.

Last week I sat in on a zoom meeting with Nuvalent, the company developing a drug to specifically target ROS1, not other drivers as well like others drugs used to treat ROS1. (Here are my unscientific thoughts if I followed it somewhat correctly.) Specifically targeting ROS1 means that it will be laser focused on just those cells, not affecting others along the way. With no attention anywhere else, ROS1 will not be able to mutate and escape. Also, I think with other things along the way not being affected, side effects will be less, and perhaps ROS1 lung cancer will be a chronic, managed disease. The Nuvalent drug for ROS1 has not yet been tested in humans. It will be in a phase 1 clinical trial within a few months. Only a few people in a few sites will be in this trial. Then, if dosing can be determined and all goes well, it will move on to a phase 2 trial, with many more people included. The team working on this is filled with heroes. They were told of a need that had real possibilities for successful treatment, and they are working as quickly as possible. The ROS1ders are encouraged, hopeful, and grateful.

These new, more effective and efficient treatment options are desperately needed because so many are running out of options. For some of the ROS1ders the drugs developed initially for ALK tend to work longterm. A few have been on crizotinib for several years (many years for the lung cancer world) , and a very few of us have been on lorlatinib for four or more years. But for many, ROS1 finds that way around and these patients go through treatment options quickly, not finding one or even a combination that works. This spring we’ve lost several ROS1ders, young people, healthy all before they developed cancer. The possibility of that promising drug is something to give hope to surviving ROS1ders and our families.

As for me, I continue to find joy in the everyday every day. I recommend this practice to anyone. It is soothing for the soul, especially when things are sad. Don’t let life pass by without taking time to enjoy the “little” things. Right now for me it’s watching wildlife, playing ball with Ruby Jean, planting the garden with Dan, and picking flowers, leaves, etc. to dry, laughing at goat antics, tripping over Rusty (always underfoot), and quiet evenings with Dan and the dachshunds.

Enjoy your summer! That’s my plan.

Be a ROS1der Superhero! https://ros1ders-inc.networkforgood.com

Normal?

First I must say I’m again filled with gratitude after a day at Dana-Farber, ending with a phone appointment (on our way home) in which Dr. Janne said all is stable. And, I have finished my quarantine with no COVID. Relief.

There is NO NORMAL in Stage IV cancer. You may say that is my opinion or that I’m just having a rough day. NO. We CANNOT, we MUST NOT normalize this. Today I am filled with sadness for the family of a young mother, one of our much respected and greatly loved ROS1der co-founders. (Just a year ago a beautiful young friend died of inflammatory breast cancer.) We cannot accept that this is the NORMAL way this disease has to be. It is the current reality. This superwoman lived life fully with lung cancer for eight years. She did what so many ROS1 patients do by beginning on one targeted therapy drug, then moving to the next and the next and the next (likely some/all in clinical trial) as the disease progressed or returned in her body. With fewer than a handful of others with ROS1 cancer, she co-founded the ROS1ders. https://ros1cancer.com Extraordinary. Today I honored Tori by donating to the ROS1ders’ research fund. You can join me, helping to find treatments that can turn this disease into a manageable one, so other young ROS1der parents may live longer, better. https://ros1ders-inc.networkforgood.com/projects/117609-corinne-pert-s-fundraiser

The ROS1der goal of accelerating research is being realized, but the research is not outpacing the need for new treatments to deal with a beast that finds ways to work around each of the current treatments. And, so far it seems no targeted therapy has been developed that holds the beast at bay “forever”. (I remember when my first Dana-Farber oncologist told us I was ROS1+, that it could be treated (not cured, but treated) with a targeted therapy drug. “You mean it can stop it forever?” “No, not forever.” She went on to explain how that nasty little ROS1 eventually finds a work around.) So, not our NORMAL, but our reality.

We’ve all experienced an abnormal year since coronavirus became part of our reality. It hasn’t been a “new normal”. We’ve all known it was not NORMAL. We have coped. Some by pretending things are normal, some by facing reality. But, no one can have truly just felt like this was normal.

I am grateful for the researchers, oncologists, our family, and the prayers, well wishes, and hope of so many. It’s all kept me going for the past five years. I cannot/should not/must not NORMALize (Conforming to a standard; usual, typical, or expected) living or dying with cancer. As wonderful as it is to be well enough to find joy in the everyday every day, it is not NORMAL to take a medication (without which you likely would die within months) that causes you to need not only one, not two, but three cholesterol lowering drugs, that causes painful neuropathy in your extremities, that causes you to gain weight uncontrollably. (And those are the “manageable” side effects. Some are not tolerable, forcing discontinuation of a drug. Another reality and fear faced by cancer patients.) I know what the alternative is to my present reality. Kind of like the alternative to getting old. I’m not complaining, I understand. I’d love to live to be “old”. I hope to see the day when I declare myself old.

Yesterday I had outside visits with my sister, then my daughter and a granddaughter. Today we were visited (outside) by our son and another granddaughter. Today we went for an almost spring walk. Our plan is to get back into this routine. I picked some pussy willow twigs to add to my stick bouquet. All things I love. All things that fill my soul with joy. Everyday things. Normal? Nope, not normal, but finding joy in life despite the realities of the details.

Today, please join me in sending thoughts of strength and peace to Tori’s husband and three children. Please join me in sending thoughts of hope to all the young ROS1ders facing the fears, the realities, the costs of living with stage IV lung cancer. (I cannot imagine doing this as a young parent.) Support lung cancer research by writing to your representatives and donating if you can.

My next appointment (if all goes well) at Dana-Farber is in late May. I hope we will have our vaccinations by then. Stay safe. Love to all.

Promising Possibilities

Last night I was too excited to sleep, and I always sleep well, happily snoring the night away.

Here’s the backstory: The cancer I live with cannot be killed (until I die maybe, and then I hope it lives on in a research lab). That’s just how it is. But, as you’ve heard, my targeted therapy drug, the mighty Lady Lorlatinib, has kept it in check ever since my first targeted therapy Crizotinib let the cancer creep into my Central Nervous System, into the meninges of my brain. I am lucky to have a cancer that can be treated with a targeted therapy drug (a TKI). When I began Lorlatinib it was in clinical trial. Given that the cancer was in my brain lining, it was pretty much my only option, and I was very fortunate because not long before this someone with cancer in their meninges might not qualify for a clinical trial.

So, 3.5 years later Lorlatinib has been approved for a different “mutation” (ROS1 is really a gene fusion, but that’s too much for this story.), and it is still stomping on ROS 1, keeping things “stable”. The disconcerting fact of living with this cancer is that it is tricky and at some point it may (likely) change things up just enough to get out from under Lady Lorlatinib’s steel boot and go for a ride wherever it pleases throughout my body. And truly? There isn’t another Lady Lorlatinib just waiting for me, especially given that ROS1 is already in the brain meninges. There are other targeted therapy(TKI) drugs in trial, and chemo combinations being used for ROS1 that might be available, might buy us some more precious time. But no real Lady Lorlatinib.

The real story is below. Hope, possibilities, exciting enough to keep me awake. A future where this cancer may be treated as a chronic disease. Researchers dedicated to finding treatments for rare, yet treatable cancers. “My” oncologist, Dr. Pasi Janne, Director of Thoracic Oncology at Dana-Farber Cancer Institute, listed as a scientific advisor. A promising possibility, one that if needed, may be there to help me and certainly others to keep writing chapter after chapter in our life stories. Not tomorrow or maybe not even six months from now. Yet-promising possibilities! NUV-520 (Read about “her” under the heading Pipeline.) Need to click on word HOME first, I’ve discovered. Then, if on phone, scroll down. If on laptop, PIPELINE is at top.

Trot, trot to Boston!

Remember that nursery rhyme?  No?  That’s okay.  Like many nursery rhymes, it really isn’t as baby friendly as a rhyme ought to be.

Good news!  All the test results I did receive so far from my whirlwind day at Dana-Farber yesterday are just the same as May.  Stable. No progression seen in chest and abdomen CT scans.  And, blood tests results (except cholesterol) are very good.  In the days of COVID-19 I didn’t  get a same day reading of my brain MRI, but I am expecting that to be okay too.  (Power of positive thinking, and I’ve no new symptoms.)

Because of a mix-up in scheduling, DF wasn’t able to get my testing all done in a timeframe that made it possible for my superhero chauffeur to drive to Boston from home, wait in the car, and drive back home in one day.  That presented a big problem in my mind as the only buildings other than ours that I’ve been in since March 8 are 2 health facilities. So, ugh.  Decisions, decisions. Postpone?  Twelve weeks is already the longest allowed time between appointments when in this clinical trial, and from our perspective it is plenty long enough. So no postponing.  Because I learned about Thursday’s appointment Monday afternoon (it was first scheduled for next week, which I thought seemed odd because that was 13 weeks), it was really too late to ask someone to go with us.  And besides, you know… COVID-19. (Not fair to ask of someone.) Ugh, okay.  Well, in May everyone we saw on the streets wore a mask, and at DF I felt as safe as one could in these times.  The Inn at Longwood, a hotel a block from DF, is accustomed to medical patients staying there, so they must be careful.  Fingers crossed.  I packed enough food and water for two days, and decided we could get to a room with no/minimal contact and sanitize surfaces when we got there.  (I did not take our own bedding.)

We left home at 2:45 AM.  We always allow some time for traffic.  For the second time, traffic, even going into the city, was light.  (I think many may be still not working, not traveling, working from home.)  We already knew that Dan wouldn’t be allowed in with me.  (Typically during the day of appointments, there’s down time to be together, I know he’s just outside the room waiting, and he’ll be at the appointment when we hear the results.  But, that can’t be in the days of COVID-19.) His plan was to sit in the car until he/we could go to the hotel. Fun, huh?  Me?  Even more fun, if possible.  The day (and trip) worked out pretty well.  But to me it seemed like  lots of exposure to lots of spaces and people.  All masked.  All distancing.  Here’s a recount:

8:00 AM start from parking garage.

Elevator (alone) to Floor 1 Yawkey.  COVID-19 screening questions, get surgical mask (everyone, even if yours is comparable). (Two different people) Get badge showing I cleared screening, learn that because we’re a little early I must wait in cafeteria before going to lab.

Elevator to Yawkey Floor 3.  Sit in cafeteria, touching only my phone to text Dan and call hotel.

Elevator to Yawkey Floor 2.  Check in with receptionist for labs. Get the usual clip on badge that can find me, answer same COVID-19 questions.  Sit in waiting area.  Go to lab, nurse draws blood and puts in IV.

Elevator to P2, walk through “tunnel” to Dana.  Screeners there see my badge.

Elevator to Dana L1.  Check in for CT scan. Same COVID-19 questions.  Sit in waiting area.  (Everywhere chairs are spaced, and the number of people is much lower than typical.  Makes me wonder how many people are putting off treatment.  You can’t zoom scans.)

Called into room where typical CT scan questions are asked and to get nasty drink.  (Person again got drink, and wasn’t wearing gloves.  Yes I want a straw, sanitary I hope inside that paper.)

Back to waiting room.  Same chair is empty.  Wipe hand sanitizer on bottle.  Spend 30 minutes drinking nasty drink.

9:50 AM  CT scan.  IV unwrapped and flushed, scans.  Dye in IV, scans.  IV flushed and wrapped.  (I still wonder how you can taste the saline so quickly or at all when flushing the IV.  I need to google and watch an animated video of that.)  CT tech says MRI called and I can go there now instead of 1:00.  Okay!  Wait, we’re going to try to check in at hotel.  Send quick text to Dan.

Use bathroom on Dana L1 before leaving.

Elevator to Dana 3.  Check in with MRI receptionist.  Same COVID-19 questions.  Sit in waiting area.

Tech comes out to get me. Changing room and locker.  All off but undies – hospital johnny, pants, and socks.

Into prep room (my term) where MRI questions are asked and IV unwrapped and flushed.  Same Tech.

Into to MRI room.  Mask upside down.  (The nosepiece will show, but on my chinny chin chin.) Lie down, two techs (I’m not sure what their professional title is.) tuck me in.  Nighty, nighty.  Halfway through I’m hauled out (don’t move!) for dye to be put in IV.  When done, back to changing room.  Take clothes from locker, dress.  Go back through waiting area.

Walk across bridge (indoor) from Dana to Yawkey.

Elevator to P5.  Hand sanitize and get in car, interrupting Dan’s lunch.

11:30 AM Hotel parking garage, check in, sanitize room cards, elevator to Floor 7, enter room, and wipe down as much as sensible (maybe more).  The room looked very, very clean when we entered.  Things like remote were wrapped in plastic (changed each time).

Put food in fridge,  have lunch and rest in hotel room.  Both unexpected and appreciated.  Usually there’s no time for me to eat (or I can’t before a test/procedure) and I never really rest on DF day.

2:30 Elevator to lobby.  Walk one block to DF.  Everyone is masked and distances.

DF Floor 1.  Ask if I need screening again or new mask.  Young man handing out masks says no.  Good thing I have on a new, clean surgical mask.

 

Elevator to Floor 10. (one other person).  Check in at receptionist for EKG and Dr. appointment.  Same COVID-19 questions.  Sit in waiting area.  Very few people in a very large space.  Feels so different.  Thinking about  going to my appointment without Dan, I am grateful that the people coming to their first appointment are allowed to have a companion.  And no, I’m not going to FaceTime the appointment.  If there’s hard news, I want to be with Dan when he learns about it.  Okay, enough of that.  Good news is what we got.

Into to room with nurse for vitals to be taken. No I don’t want the kg to lb conversion, thanks.

Into different room for EKG.  Lie on bed/table  Socks down, shirt up.  Sticky pads here, there, and almost everywhere. Two nurses (I’m quite sure they are nurses) – one supervising the other who does the EKG.

Back to waiting room. Different chair.

Another person takes me to the exam room for my appointment.  This day I saw a NP.  When I first started at DF I frequently saw Margaret, so I was excited to see her, and always am happy to see Nurse Dawn (clinical trial nurse).  Margaret and Dawn come in together.  We talk about tests (all good, MRI reading next day) high cholesterol (it is a known med side effect, but as Margaret said, “We don’t want for your heart to be damaged by the medication”, maybe trying yet another new med for the cholesterol.) We discuss other side effects (neuropathy is “okay”, weight gain makes many aspects of life difficult).  Up on exam table/bed.  Lungs and heart sound good.  Off to get next 12 weeks of trial drug.

Elevator to Floor 2, one other person.  Push button at trial drug window of pharmacy.  Not ready.  Sit in waiting room.  Sit in waiting room.  Sit in waiting room.  45 minutes.  Get med.  No touch, expect bag to drop in my bag. (Can’t walk the streets with a clear bag of pills, even if they won’t do anything good for nearly 100% of the population.)

Elevator to Floor 1 (Never see stairs offered as choice.), one other person.  Out the door!  Yay!

Walk back to hotel.  More people, still masked and distancing.  Remarkable and impressive.  (Especially since at the Rusty Lantern in Augusta where we filled the gas tank, no one going in and out of the convenience store had a mask.)

Into to lobby and up the elevator to Floor 7.  Into room, wash hands, change clothes. Brew tea.

Nothing to it, right? A full day.  I am not complaining, just hoping to help people understand.  It’s tough and tricky.  It’s tougher and trickier in the days of COVID-19.  And I really have it very easy compared to many.   I am grateful I am a very healthy 63 year old, living well with stage IV lung cancer.  I am grateful little ROS1 is treatable, knocked on his fanny for now by the honorable Lady Lorlatinib.  I can deal with the side effects, as they are currently.  I am grateful for my Dana Farber team.  A special thing I learned – Dr. Ghandi, my first DF oncologist has returned to DF!  Not Floor 10, but back, so that is very good news for DF.  We will forever be grateful to her for giving us so much hope at a time when others are made to feel so empty of any hope.

And, now here we are.  Back at camp, finding joy in the everyday every day.  At 5:00 AM we left the parking garage in Boston, stopped once to fill up the gas tank (Dan, hand sanitizer used), and were greeted by happy goats and dachshunds!  And, a little more sanitizing because our spoiled puppies had overnight guests.  Thanks Mandy and LL, for staying over. (They DO NOT like being left, even when checked on.  Peace of mind for all of us.)

Thanks for reading, and for your support.  Be kind to others, please.  Try to find joy in your day every day, it helps.  And please vote.  If by mail, vote early!  Love to all.

 

 

 

 

Stable, inside and out!

Stable scans = great news!

When cancer joined our life, we knew things were never going to be the same or what we dreamed of for our old age together.  Over the past four years we’ve built a new best life for ourselves, and have settled in to enjoy our time on earth, however it looks or long it lasts.  We take each bump in stride, and have been very fortunate that there’s always been a way to pick ourselves up,  dust off, and move on. Trying to stay healthy and well informed about health choices and needs is on the forefront, never taken for granted.

So when Coronavirus came around, we were as ready as we could possibly be.  On March 5 we had my day at Dana Farber.  On March 8 we did a comprehensive grocery trip, and then settled in a little more.  In fact, I’ve not been inside any dwelling except my own since March 8. Dan has visited his dad, but has been inside no stores, etc.  Thanks to full freezers and pantry, family, curbside, some online shopping, and “distance”  outside visits we’ve thrived.  My “go to” stores are now Merrill and Hinckley, Blue Hill Co-op, and Surry General store.

But of course when cancer lives with you and you’re in a clinical trial, oncology appointments must happen even if you feel you are doing well and think you’d know if there was progression.  I was allowed to skip my six week labs because I’ve been stable for so long.  Not so with my day of tests at 12 weeks.  In my world twelve weeks between scans is a long time.  (This trial began with every 3 weeks.)

But what about coronavirus?  Dana-Farber is safe.  But Boston isn’t safe, I watch the news.  We aren’t really going to Boston, we’re going to Dana-Farber.  Dana-Farber is safe.  Dana-Farber is in Boston.  And so it went for the two weeks leading up to the appointment. I talked with the trial nurse, who was working from home.  I learned that after my tests there would be a phone appointment, a conference call.  I learned that very strict guidelines were in place, and any appointments that could be postponed or done by Telehealth were not be conducted at DF.  Mine were not to be postponed. (Doing all tests locally would not be easier or as safe, we concluded.) Then, I received three calls in the two days leading up to my appointments regarding  COVID-19, asking me screening questions. So. Hmm. Huh.  No more excuses.  Not any sensible ones.  We would do it all in a day trip.  Dan was confident he could drive there, wait, and drive back safely.

So yesterday we went!  Got there in record time – no traffic!  Even though I felt unsafe, I do believe I was as safe as could be when at Dana-Farber.  Only the patient may go in (with very few exceptions).  This was a first for me.  Masks are a must when you leave the car.  Everyone is screened upon entering ( same questions as on the phone) the Yawkey lobby and given one of their masks.  “Sneeze guards” are around every reception desk.  ID is looked at, not touched.  Parking tickets are not validated – free parking during this time. (Usually $12.00 for day when validated at appointment.)  No clipboard with questions to fill out by pen, those are asked orally or prior to by phone.  Waiting room chairs are spaced 6 feet apart.  Everyone in the building wears a mask.  Some techs wear full PPE.  I went through my day. Elevator and hallway. Dana Building L1  Check-in 1.  blood work and IV in.  2. CT questions and get nasty drink.  Drink over 30 min period.  3.  CT scans.  4. Brain MRI prep (across hall from CT) Put clothes in locker, put on hospital top, pants, socks.  5.  Brain MRI, wearing my mask! (A big first.)  Even the squeeze ball has a disposable cover now. Done, get dressed.  6. Elevator and walkway from Dana to Yawkey 10.  7. Check-in for EKG.  Same COVID-19 screening. 8. Vitals taken, EKG done.  9.  Elevator to Yawkey 2, pharmacy.  Meds are ready! (That means labs were good.) No wait.  10.  Elevator to P5 and car. 11.  Sanitize phone, ID(only things I took) and shoes, change shirt.  Homeward bound, record time!  Dr. Janne and Nurse Dawn call shortly after we reach Maine.  Scans look good!  Labs are good too!  See you in August, call if you need anything.  And so it went. Lady Lorlatinib, my targeted therapy drug, continues to keep the beast controlled (34 months so far).  Our tears are of relief and joy, and maybe a little fatigue.  Mostly joy, thinking of a summer of gardening.

Boston residents were following safety guidelines.  Everyone walking on the street wore a mask even.  It seemed much safer than stopping for gas at a convenience store in Augusta.  Dan was safe, used a disinfecting wipe, sanitized, and we didn’t go near the store.  But people with no masks were streaming in and out one door, in each other’s face and space, handling the door and everything in the store, and … on and on.  All I can say is that we have decided it is solely our responsibility to keep ourselves safe.  As much as we hope others will follow the safety guidelines, we know many are not.  We can be sad, frustrated, bewildered, even angry (not worth my energy) at their behavior, but that won’t keep us safe – we will.  We must.  We have more life to live.

We’ve decided that every day now, during the time of coronavirus, feels like Saturday.  They aren’t Sunday, but they aren’t “work” days.  So they’re all Saturday!  Really though, I know that Monday – Friday our CDC Director, Dr. Shah, will give us the daily update at 2:00 PM.  (I know I can read it on the CDC site earlier, but I feel his presentation is important for Mainers to see.) Every day I hope to hear that no Mainer has died.  I am so saddened at the thought of anyone dying such a difficult death with no family there.  And sad for their families.  I cannot change that.  I can only help the greater situation by keeping myself safe, and asking those I know to do the same.  We do not want to have people die needlessly or to overwhelm our fragile health system. Avoiding outbreaks in nursing homes has to be our collective responsibility, doesn’t it?

Please.  Stay safe.  Wash your hands after going out or bringing things in.   Wear your mask.  Don’t touch your face, even if that mask is itchy.   If not for you, then do it for the grocery clerks and others you come in contact with.  Thank you.  If I see you wearing your mask, I’ll be smiling under mine.

This week we had new friends at camp – a Baltimore Oriole and a cardinal.   Tomorrow is  Saturday! Isn’t every day, except Sunday?  Sunday we will plant our garden, grateful that we’re together for another summer of finding joy in the everyday every day.  Here, at camp with our two spoiled dachshunds and four funny goats.  May you feel as blessed as I do.  Please, always have hope.IMG_2953

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Health Update (Good news)

No changes – that’s good news.  Last week we went for my day of appointments at Dana-Farber Cancer Institute.  If we had known of the COVID-19 outbreak in Boston I think we would have still gone, and in the way we did.  All day we practiced as much “social distancing” as we could, and used hand sanitizer frequently.  DF was already geared up for COVID-19, with doctors being told no business travel, online training, and a noticeable difference in greetings – no handshakes.  At DF they always have to take extra precautions in sanitizing, etc. because of the fragility of the immune systems of their patients.  So, after a very long day of driving (well riding for me) and appointments, I got the news that all remains the same, and picked up my trial medication (lorlatinib – 33 months) for another 12 weeks.

Staying positive is usually easy for me.  I’m definitely a “look on the bright side”, “glass half full”, hope-filled person.  But sometimes this cancer life gets me down, and my logical self says, “Understandably so”.  This blog is intended to share my experience to inform and help others.  It isn’t to paint a rosy picture, but rather an honest one.

I am grieving, as much of our peninsula community is, because this cancer beast caused the death of a beautiful young friend recently.  Inflammatory Breast cancer is another rare cancer, often diagnosed at late stage.  She, too, shared her cancer journey, hoping to inform, educate, and bring hope to others. It is inspirational reading. https://rosannamcfarlandsjourney.blogspot.com

All winter I’ve avoided crowds, not wanting to catch something after being hospitalized in early January. I can’t spend much time outside in the cold as it bothers my breathing.  I went to one basketball game for each of the grandchildren, and that’s pretty much it for large gatherings.  This is because of cancer. In the past I would have attended as many as possible.   So too I missed Rosanna’s Celebration of Life because of cancer.  Yet I was there by “being” with them, listening to songs on her playlist, reading Rosanna’s blog, praying for peace and comfort for her family.

And now, here we are – all of us dealing with a pandemic.  Other than the very real concern  about catching COVID-19 (I’m high risk, with a damaged lung and we are, umm, over 60),we’re much better prepared to work my way through the next months than most, I think. I just filled my trial prescription and won’t have to return until late May.  (Some friends in the cancer world are weighing the pros and cons of going to even necessary appointments.)  We learned how to sanitize everything when living at the Hope Lodge while I was having radiation at DF, so I feel safe in that respect.  We don’t have jobs that we will lose.  (Hoping the lobster industry will get bailed out like the cruise lines will.)  I have put myself under house arrest, no visitors.  (My friend Kathy and I will send each other interesting photos, and fun jokes and quotes.)  I can enjoy the coming of spring, being outside as much as I want. (Pussywillows are out here!)  I have 6 artist trading cards to make for swaps, a junk journal in progress for a friend, and two FB group  monthly art projects to work on.  And, I have Dan, two dachshunds, and four goats for company.  The best!  We have full freezers and cupboards.

I am still ever so grateful for this gift of time that I’ve been given.  All the hardships of living with cancer are just hardships right now, things I must deal with proactively as they come.  Living to find joy in the everyday EVERY day is a gift that I hope all who breathe can understand and enjoy.   I am grateful, too, that so many people are now taking this pandemic seriously.  (I wish our President and his administration had, and would.  But that is now for November.)  I’m grateful to the many front line health care workers.  This is a novel (NEW) virus that obviously spreads easily and rapidly.  Think about your elderly and high risk neighbors and relatives.  (My relatives and neighbors offered help to us and Dan’s dad.) We need to work together to not overwhelm our health care system. Social distancing, washing hands and sanitizing surfaces will help slow the spread.   Enjoy some extra time outside in the spring weather.

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A tale of three lives

Musings of living, living with  Stage IV lung cancer, a terminal disease…

I often feel as though I live in three lives or worlds.  There’s my happy life that’s filled with joy, love, family, nature, and crafting.  It’s the one I have some control over.  Then there’s the world around us, the “real” world, the one that is way out of balance and ever so scary.  I always say to not worry about things you can’t do anything about.  I’m worried, and all I know I can do is to vote.  It doesn’t seem like enough.  And finally, there’s  my cancer world.  Right now that world is just plain sad.  Sadder than sad.

I am lucky to be ROS1+ and to be in a clinical trial with a drug that has been keeping my cancer controlled for 2.5 years.  Over the past four years I’ve become friends with many in the lung cancer community.  This life too is filled with love and hope. In the past two weeks several people I know have died or made the choice to begin hospice care.  When over 400 Americans die every day of this disease, I guess it’s not surprising. I’ve not “met” any of them, but we are friends through Facebook, the ROS1ders, our blogs, and advocacy. This is beyond sad.  It is unnecessary .  If lung cancer research was funded at the rate of other cancers, maybe they would still be here, like me, living with lung cancer.  Or, maybe if their PCPs had taken their  symptoms seriously, before the disease metastasized, maybe they would have been able to be cured.  But no.  I hope their transition was peaceful and filled with love.  I grieve for their families, especially their children.  My third world, my cancer life.  Please urge your representatives to work to increase federal lung cancer research funding.

In reality these lives of course intermingle and I must find a balance that works for me.  Just as anyone who needs to deal with the many aspects of their life.  I feel blessed that I’ve been able to simplify my world significantly .  I can’t imagine living with Stage IV cancer and treatments while working and raising young children, but I’ve friends who are.  Please keep them in your thoughts and your prayers.

I continue to play.  Here are some photos of my latest paper bag journal and a page in an ephemera folio I made.  Love to all.

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Lesson learned!

Living  with cancer, even when you’re feeling relatively well, is trickier than I realized.  The good news is that I’m on the mend and back to feeding goats and crafting.

On the very day that I should have been celebrating four years of LIVING with cancer, I found myself in the hospital.  Ugh.  A simple infection turned into a three day stay being observed and cared for in the Special Care Unit.  Huh?!  How could that happen?  Well, I have cancer you see, and even though it is my med that controls the cancer, it is my job to take extraordinary care of my body and mind.  I think I forgot that in all the fun of the holidays, got overtired and kept going as I always had, and the next thing I knew I was sick, really sick.  An ordinary infection that decided to creep into my bloodstream took advantage of my body focusing on making conditions optimal for my med, and being distracted by the holiday festivities.

Two ER trips, CT scans of chest and head, EKG, who knows how many bags of IV fluids, IV antibiotics, heart monitoring, chest x-ray, blood work and more blood work, and on and on. I must say that I got the VIP treatment as a stage IV cancer patient.  I hope that everyone is treated so well.  I even got to practice using my spirometer!  The happy ending to this chapter is that everything is now okay.  I expect it will take me a while to get back to where I was, but I’m confident I will.  I did get some mighty good chicken soup delivered to me, and that sure is good for whatever ails you.  And, now I know.  Just because I’m feeling pretty good, that doesn’t mean I should push myself.  And now Dan can (and did) say, “I told you so!”  (In a very kind and gentle way.) Lesson learned.

So back I go to finding joy in the everyday every day here in our winter home, cozy and warm with Dan and the dachshunds. And, in case you missed it too – I have passed the four year mark of LIVING well with stage IV lung cancer!

When I got back to playing I made this junk journal out of a 6X9″ envelope, scrap paper and cloth, a cereal bag, odds and ends of cardboard, and a few buttons.  Pretty fun!

 

Onward we go! All stable

Last week we did our day (We left home at 6:00 AM, drove to Boston, and reached our hotel at 8:00 PM.) of tests and appointments at Dana-Farber and the news is all good!  The CT scans of my chest and abdomen are unchanged, the brain MRI is unchanged, the EKG was normal, the blood work showed that my additional cholesterol lowering medication is working. High (almost out of control) cholesterol is a medication side effect.  Everything else in my blood work remarkably is still always in the normal range. So has ROS1 hopped in his speedster and departed? Nope.  But he is currently still out of gas, stalled.  Not moving, not growing.  My hero, the Lovely Lady Lorlatinib is the real beast, in all the best ways.  While she may not be so kind to my body, we’ve learned to get along.  And she is strong, keeping her foot on little ROS1.  Doing her job.

Me?  I’m still playing, taking care of my mind and body, and finding joy in the everyday EVERY day, here in our winter home with Dan, our dachshunds and goats.  Filled with gratitude as we near the fourth anniversary of my Stage IV lung cancer diagnosis.  Looking forward to having the children, grandchildren, and Dan’s dad all together over the holidays.  Making memories.

Thank you for all the prayers you say for me and the positive thoughts you send.  I am grateful.  Love to all, from our side of the mountain.

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ROS1der Research

Dear Friends and Family,
The ROS1ders set a research fundraising goal for this month in honor of Lung Cancer Awareness month.  I hope you can help us reach it. $10.00 is what I’m asking you to contribute.  Four years ago my cough-cough led to a Stage IV lung cancer diagnosis (Jan. 2016). You know my story.  Since then I’ve been on two targeted therapy drugs for ROS1 cancer. Neither FDA approved when I started them. Currently I am in a clinical trial. With each new drug the research scientists are learning more and more about the response to and of the ROS1 fusion. The ROS1ders are donating tumor tissue and more to this research. For me, there is possibly one more drug in trial when ROS1 finds a work-around to my current drug.  For others there isn’t yet another drug.

For you scientists in my “family”, here’s some information on the research. ROS1 PDX Study

Here’s what I’m asking of you – $10.00 If every one of my blog readers and facebook friends and family gave $10. to this research I’d have made a great contribution. I ask this as much for the young moms and dads in our ROS1der group as for myself. Sure, I’d love to stay around to watch the grandkids grow and to get to grow old with Dan is a dream I once took for granted. But there are young people in our group who need to live long enough to see this cancer treated as a managed chronic illness so they can just experience life.

So, $10.00. Please.  Thank you. Thank you for this and all your love, support, well wishes and prayers.  Thank you for reading this and every post.  Here’s the link to my fundraising page.  Corinne’s ROS1 page

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