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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