Big Night, Big Week

Big Night is an amphibian phenomenon.  It’s fascinating, and I’m very glad I learned about it, and about how humans feel a responsibility to help.  On the first rainy night in April salamanders and some frogs migrate from their winter home to their breeding pools.  Often this means crossing a road, so that’s where people come in.  They help move the salamanders and frogs across the road.  Yes, on a rainy April night, way past dark, people go out to help on Big Night.

So I got to thinking about it.  I understand that they need to stay wet, so rain is needed.  I understand that they avoid sun for the long journey, so travel at night.  But why do they cross the road?  Why not find a vernal pool on their side of the road?  I mean really.  I saw the poor little guys crawling over that winter “salt sand” to even reach the road.  Why?  Simple.  They are returning to their ancestral breeding pool, not just any vernal pool.  And so that adds to why it is so wonderful that people help them.  It is our responsibility since we put the road in their way. Here’s one naturalist’s explanation (and an interesting  blog to follow).  Mary Holland’s “Big Night” explanation

I first went out on Big Night last year.  We (my sister, niece, and a friend, new to big night!) went out on a night that wasn’t so big this year.  I couldn’t go out a couple nights later on what turned out to be Big Night because I’d had a Big Week.  Either my targeted therapy drug or cancer cause me to have less energy and stamina.  But that’s okay.  It’s because of crizotinib and now lorlatinib (and so much that’s not medical) that I can think about going next year.  And, the other really wonderful thing about me learning about Big Night is that I shared it with others who love it now too.  On Big Night my phone chimed on the bedside and sure enough, there was a pic of my granddaughter holding a salamander.  The whole family was out in the rain with friends, way past bedtime, to save lives.  What a great learning adventure for the children (and their parents)!

Big Night came in a big week for me.  The night before the “night I went out searching” was certainly a big night for me.  I went to see the Wizard of Oz!  Yup.  Somewhere Over the Rainbow for me.  And not just me!  I got to enjoy the show with four of my grandchildren (the campers) and my son, daughter-in-law, and daughter.  We all rode together and went to dinner before.  Everything, even (or maybe especially) the car ride was so great.  What a treat the evening was!   There’s so much I could say about how much that evening meant to me in any life.  Yet, I can’t even think how to describe exactly what it means to me in this second life I’m in.  Just so precious and special.

To top off my big week, my sister, a friend, and I went to Bar Harbor  yesterday and walked the trail in the village that goes along the ocean , stopping of course for lunch, but too filled for Pugnuts ice cream on the way home.  I tried out my new sneakers from Ortho Feet.  Pretty good!  Roomy, well cushioned, comfortable.  Not too stylish, but luckily that’s not what I was looking for.  I was looking for something that would help with the neuropathy discomfort when walking.

Dan and our son have been working on traps in the field by the house, readying them for lobstering “season”.  How nice it is to be here to prepare lunch for them.  I’m grateful that I don’t have to struggle to try to keep working like I was last year at this time.  I’ve loved my winter at home as much as I loved my fall at our camp.  Today I made a sauce with tomatoes I froze (whole by the way) from our summer garden.  Soon we’ll be planting again.

IMG_3456

Enjoying the everyday every day. Me. Now.

Be your own Advocate

Today I went to my PCP.  I’ve had a hard lump on the bottom of my foot that appeared as part of dealing with neuropathy.  Dr. PCP seems to think it is unrelated to my neuropathy.  She/he also thinks the nodules on and inflammation of my finger tendons is also unrelated.  Funny coincidence, both are caused by trauma, both involve inflammation, and both happened shortly after the neuropathy began in those appendages.  I know better, but at least today  Dr. PCP confirmed for me that it isn’t something more serious.  It wasn’t worth trying to convince Dr. PCP or to argue the point.  I will share my observations with my clinical trial team.

What was more traumatic was that I was in the room where I first was told I had a mass in my left lung hilum.  Sitting there waiting today was unpleasant, thinking back to January 7, 2016.  I’m not sure Dr. PCP knew what the hilum was that day.  If she/he did know then, she/he couldn’t explain it, having to look it up.  The hilum is the point of entry and exit to the lung.  KenHub explanation of hilum “Functionally, this means that the hilum aids the lung roots by anchoring the lungs to the heart, trachea, and surrounding structures.”  Left hilum, near the heart in addition to having an important job.

But, that was then and I’m here now.  And, I made the choice to stay with the PCP who missed my illness totally, despite my visits, calls, and pleas for help that fall. I am so grateful to the walk-in clinic FNP who had the good sense to do the x-ray that saved my life.  I stayed with Dr. PCP because of convenience.   I would not have stayed for my treatment, choosing to go to Dana-Farber saved my life.  I have hoped that this experience would help inform Dr. PCP about lung cancer symptoms, that she/he might listen more carefully to patients, that she/he would believe the patient when they are clear that what’s going on isn’t a long lasting cold.

But, today for the first time I felt angry.  Not because of the lack of, or misdiagnosis.  That’s every Stage IV diagnosed lung cancer patient’s story.  I forgave him/her that day he/she had to give me the news.  Today really started last week when I called to try to  see Dr. PCP.  I explained why I needed to be seen, and was told that Dr. PCP was booked into July.  Hmm, I thought.  Then I laughed.  It does seem like a funny situation for someone who is already past their statistical expiration.  (I inherited my mom’s sense of humor.) The receptionist must have been confused by my response, but then she did tell me that if I called at 7:30 AM any day I might get in to see my doctor or another.  So, I weighed my options and decided to call this morning.

So after waiting in the room with the unpleasant memory playing over and over for 15 minutes, Dr. PCP came in.  Once we completed the purpose for the visit, Dr. PCP asked how I was doing.  Since I hadn’t been in for quite a while I explained (as succinctly as I could) about the  leptomeningeal cancer progression, entering the clinical trial, and the success (80% reduction) of the new drug Lorlatinib.  Then came the part that I felt angry about (and is already forgiven and soon to be forgotten).  My PCP, the one who seemed interested, said, “Well, I think they send reports to us so why don’t we just schedule an appointment in six months to check in.”   He/she didn’t even know if Dana-Farber sent reports, hadn’t even peeked at my chart to see what was up before coming in to the room, had no process in which he/she checked on his/her patients with metastatic cancer, and he/she thought it would be nice to check in in six months.  And me?  Silly me.  I stopped at checkout and scheduled that appointment.

Recently I saw FB posts singing the praises of Dr. PCP.  Before cancer I would have said to anyone asking about this doctor that you’d have to do your own follow-up, that Dr. PCP doesn’t always call promptly with lab results, mammography reports, etc.  Now I would add that if he/she doesn’t care about my case enough to know if Dana-Farber has sent reports (of which there have been dozens in 2 years), then it seems unlikely that he/she is very attuned to the needs of his/her patients.

As we all know, but don’t always remember – you know your own body.  Pay attention to what it’s telling you, and advocate for yourself.  Ask questions, ask for explanations of test results and treatment options, ask for expert opinion, and if you don’t feel confident about any of it, seek another expert opinion. I feel blessed that we made the right choice for us by going to Dana-Farber .   They fill us with confidence in their work and with hope.  Even when the news is not so good, there’s no doom and gloom, and always hope.

Spring seems slow in coming here on the mountainside.  The goldfinches are now bright in color, and tom turkeys are in full strut, dancing for the hens.  Dan and our son are now over in the field daily working on getting the lobster traps ready for another season.  I am truly finding joy in the everyday every day with Dan, the family, our three little dachshunds, and Dottie and Matilda, our spoiled Nigerian Dwarf goats.  And, tomorrow night my children and grandchildren are taking me to see the Wizard of Oz.  Blessed.