Health Update Sept. 6, 2018

Nothing but smiles!  You know it’s good news when at the end of everyone’s long day, we’re all smiling – oncologist, patient, and caregiver.  Worth that traffic, worth staying overnight, worth going through a day of tests every nine weeks (lots better than the 3 at the start of the trial).  “Everything looks good.  Your brain MRI looks great!”  Wow, what more can we hope for in a visit.  Feeling grateful and blessed.

Yes, I still have metastatic (stage IV) lung cancer.  Yes, it is still hiding out in my lung, my liver, my colon, my brain.  We coexist in one body.  We will for life.  But, oh what a great life it is!  Since my first targeted therapy (my superhero Crizotinib Xalkori) in March 2016 to now I’ve learned to find joy in the everyday aspect of living in ways I don’t think I’d have taken the time to if not for this ROS1 cancer.  Since the Lady Lorlatinib (my clinical trial drug) charged in (July 2017) to protect my brain meninges as well as the rest of my body, I continue to not only survive with metastatic lung cancer, I’m LIVING well.  I know I am lucky that I’m able to simply enjoy my days, at home, free from fretting about needing to work, free to do as much (or as little) as I feel like doing. My heart aches for those whose circumstances don’t allow them to do this.

I continue to volunteer for Lung Cancer Alliance as a phone buddy and as a patient representative on a grant advisory board, as well as on an advisory board for the Maine Lung Cancer Coalition.  Also, as a ROS 1der, I try to spread awareness about the Global ROS 1 Initiative ROS 1 Patient Driven Research and the need for research funding so we may work toward the next treatments (as resistance occurs and the targeted therapy becomes ineffective), and ultimately a cure in the future.  Donations (ROS1 research donation) and ideas for raising funds and funding sources are welcome.

Thank you for your continued interest in this cancer journey, your prayers and positive words of encouragement.  Time for me to pick some peppers and tomatoes, maybe make a little salsa.  For the next few weeks I’ll be finding joy in the everyday, every day at our Salt Pond camp with Dan, the three little dachshunds, and… our two Nigerian Dwarf goats and two Tennessee Fainting goats (yup, it’s true, the herd grew.).IMG_9895.jpg

Health Update July 3

Health Update July 3, 2018. “Scans look good!  Blood work is all the same.  How are you feeling?  What have you been up to?”  This is how the oncologist (one of my heroes in this journey) comes into the the room.  “Phew! I feel great now,” I think.  Moments before Scanxiety had taken a stronghold over my usually calm mind.  It’s nerve-wracking, this journey in which the things that are likely or even certain to happen eventually (like drug resistance) may carry with them few to no options at this moment in time.  Time on a drug means time for researchers to work their magic and develop the next line of treatment.

Just to recap this journey – diagnosed Jan. 2016, metastatic non small cell lung cancer -tumors in left lung hilum, liver, pelvis.  (NO. I never smoked.  Silly you, silly me.  I HAVE LUNGS!)  Okay, enough on that. Radiation to lung as palliative care.  Genomic testing showed that the ROS1 mutation is driving this cancer. March 2016 – First wonder drug crizotinib – lung tumor can’t be seen, others stable!  March 2017 – nasty beast crept into my brain meninges where crizotinib couldn’t go.  But while the fair lady crizotinib was saving my life, researchers were developing her stronger, more versatile friend Queen Lorlatinib.  July 2017 – entered Lorlatinib trial.  Lucky to be able to do that at my treatment center.  (That’s why we travel to Boston for treatment, they’ve kept me alive.)   Clinical trial means trips to Dana- Faber every three weeks, then six, now every nine weeks.  Both drugs are oral, taken once or twice a day.

Today marked a year on lorlatinib.  My appointments began with a blood draw and IV inserted. For the first time, the first vein didn’t work, so I got stabbed in both arms.  Next up was the brain MRI.  The techs complimented me on how well I did. “Practice, lots of practice!”  I replied.  When they apologized, I said, “Oh no, it just means I’m still here and that’s a good thing!”  Then I got  my yummy drink for the CT scans of my chest and abdomen. All the while Dan waits patiently.  After these tests in Dana, we walked through to Yawkey for lunch and then up to floor 10 for my EKG and Dr. appointment.  Here’s why the Scanxiety set in at that moment.  After doing vitals (good, oxygen a little low), instead of doing the EKG, the nurse took us through a different door than usual to a room to wait for the Dr.  This weirded me out big time – not my routine, not his room, what’s up?!  Nothing, it turns out.  Sorry that I scared us both.  Different room probably because Dr. Janne doesn’t usually see patients Tuesday, but was going to be away Thursday.  They  truly forgot my EKG, maybe in their excitement to go home for the holiday.  Did it after the appointment, and it was fine too.  All good, see you in September!  Camp Gramma is good to go for the rest of the summer!

Now, I write this blog for a few reasons: to keep those who care updated; it’s therapeutic for me; and to inform people through sharing my experience, and advocate for those on this journey of living with metastatic cancer.  I know I’m lucky to be alive.  That being said – it’s not like someone chooses to have metastatic cancer.  I can now though help others by sharing – thus bringing purpose to this experience.  So when I get wordy or meander off topic, it’s likely meaningful to me for one of the above reasons.  You get to choose – don’t read it, read the first paragraph to see that all is okay, read until I wander, check out the tags and see if you can tell why I chose them, or read it through.  No quiz at the end!

Today too I had to re-sign my clinical trial agreement as there were some changes.  One is great news I think for my fellow ROS1ders.  The trial is expanding from 30 individuals (with ALK or ROS1 NSCLC, brain progression) to 48.  More lives saved!  And the other reason is that now the side effects are better defined, and one with a small chance of happening is a very serious heart condition.  But seeing the list of side effects brings up a part of this journey that I touch on, but try not to dwell on.  It is though what I and anyone else on these drugs experience and some we will deal with for the rest of our lives, however long that may be.  Keep in mind that before cancer I took no daily medication, and have no other health issues.  Here are the risks on the lorlatinib list that I experience:  increase in cholesterol and triglycerides (take a statin now for that); damage to nerves in arms, legs, feet, and hands (tingling, numbness, pain, tendon inflammation now in hands and feet) – drug is reaching my brain!;  mood changes, including irritability (I don’t see it much, but I’m pretty sure Dan does and helps me through it) – drug is reaching my brain!; slowing of speech – drug is reaching my brain!;  swelling of legs; fatigues; weight gain (can’t change this no matter how hard I try).  There are others that I don’t experience.  My strategy in thinking about this is to do everything I can to keep my body and mind as healthy as I can.  No sense in thinking too much at this point as to what damage the treatments and the tests (at least 14 brain MRIs, 14 CT scans in just over a year)  are doing.  Actually the idea of dealing with the long term effects simply gives me hope that there will be a long term in which to deal with them.

Always have hope, faith that there’s purpose in your journey, and love for and in your life.  That’s it for now – I think my mood’s about to change!  And laughter, always have laughter in your life.  Maybe some children, kids, and dachshunds too!  Thank you for your thoughts, prayers, and love.  Love to all.  Enjoying the everyday, every day here, there, and everywhere – that’s me.

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Camp 2018

When IS the cure worse than the illness?

It’s a real question to consider – when IS the cure worse than the illness?  Medically or scientifically, it is all about the net result.  If the net result from the treatment is worse than the illness (or potentially so), then the cure is worse than the illness.  But how do you measure things like quality of life or the long term (years into the future) effects of treatment when you’re just trying to breathe or when you have goals that require staying on earth until the time specific goal is achieved?  Most of us would take our chances I bet.

Over the past month three people I know through life, not because cancer, have died either from lung cancer or perhaps from the long term toll that lung cancer treatment takes on the body.  Their lung cancer journeys were all different.  None were elderly. All lived life to fullest until that was simply no longer possible.  My thoughts of healing and strength and prayers are with their families.

So how do we know what to do when faced with unknown options?  No one can say for sure what the longterm effect of some of these treatments will be.  That’s one reason we have clinical trials,  and research studies over many years.  Well, for me personally in my situation the answer is easy.  Unless the quality of life with treatment makes it impossible to find joy in the everyday on most days, then I choose life here for a while longer.  And that means treatment.  We had a little glimpse of what life without treatment was like.  We know I wouldn’t have been able to sustain that for long.

We know too that this treatment  comes with a price, not just a monetary one. I think it is impossible to avoid it changing many lives forever.   I say “we” often because this journey is our journey, mine and Dan’s, along with our family.  I don’t want to make decisions alone as they are not just for me.  That’s not how we do life.  And seriously, I wouldn’t last long on my own.  It is wanting to be part of “we” that keeps me going.  But the price is high, for everyone.  Maybe it’s just what families do, but I sure wish it wasn’t something they have to do, and I think it shouldn’t have to be.

Last fall I met a woman who chose treatment for a cancer many years ago.  It was successful – she’s here, decades later!  She described to me the longterm effects on her body.  It was impressive, not in a good way.  She has had multiple medical procedures and has some serious health issues related to that treatment long ago.  But she also described many of the things she has accomplished in the time “given” to her by treatment.  A trade-off, I guess.

We all have to choose our own paths.  My heart goes out to the loved ones of lung cancer patients.  Whether it is a stage IV diagnosis caught too late, or an early diagnosis that can be cured, the journey is tough.  I know.  We traveled it with my grandfather and my father.  Whether it is months of caregiving or years, the primary focus is on the patient while often caregivers are working, filling the household role of the patient, and doing the caregiving.  There is not an appropriate framework of support for them, and with the focus on the patient, caregivers often don’t advocate for themselves.

Maybe someday not so far off treatment will be available for lung cancer to be considered a chronic, manageable disease instead of the deadly one it is now.  Not a cure, but safe treatment for a managed disease.

There are things we can all do(regardless of treatment choice):

Reach out to some of those caregivers. (I can think of many times with other friends or family members when I wish now I’d done more, hadn’t thought I was too busy or someone else was doing it or it wasn’t needed.  I can do better going forward.) Just knowing you are thinking about the caregiver helps.  Maybe see if you can drop off a meal, offer to hang out with the patient so they have time for themselves, offer to do some “chores”.  Just the offer may really help.

Support increased lung cancer research by contacting your representatives.  We can change this for future generations.  There are exciting things happening in the fields of targeted therapy and immunotherapy.  If you want to help with a donation, please consider supporting ROS1 cancer research  https://www.lungcancerfoundation.org/patients/ros1/contribute-ros1/

HOPE, always have hope.

As you can see below, we are at our Salt Pond camp, enjoying the everyday every day.   And yes, even Dottie and Matilda, our two Nigerian dwarf goats, are here and loving the oak leaves.  We had a wonderful family weekend at Spencer Pond Camps.  I’m looking forward to the start of “Camp Gramma” next week, when I’ll get eased back into the fun with 2 of the four “campers”.  I’m working hard at staying healthy in every way I can, mind and body, and reading everything from Winnie the Pooh to Radical Remission (both inspirational!).   I plan to enjoy every minute of the grandchildren’s fun.  A busy summer ahead with many more opportunities for making memories.

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Keep writing, your voice will be heard by someone, sometime.

Keep writing, your voice will be heard by someone, sometime.   I wrote a letter to the editor earlier this year.  I wrote again and it was published this time.  There’s a limit to the number of words, so I didn’t include everything I wish I could have.  Also, some of the links aren’t live and read as words only, but it was published!

Free ME from Lung Cancer Free ME from Lung Cancer , a Maine nonprofit has funds for single family home radon abatement.  Testing your home is easy and cheap.  Abatement is done professionally and may be easy and inexpensive or it may be $5000.  Thankfully, there is help for those who need it. There are a limited number of home abatement “sponsorships” through Free Me from Lung Cancer.

Letter to Ellsworth American: Don’t Ignore that Little Cough-Cough

Neither here nor there

Neither here nor there, but where?  Not complaining, just explaining! This struck me when I saw two photos recently.  One from when I was very ill, but starting to improve after two months on crizotinib (targeted therapy drug for ROS1+ lung cancer).  The second, looking quite healthy, taken recently in the beautifully painted walkway, the Bridge of Hope that connects Dana-Farber with Brigham and Women’s.

It’s weird – this state of limbo (not the “place “Limbo!) that we Stage IV lung cancer patients live in.  It’s just so different from my mindset or life in general before cancer.  You see, lucky stage IV cancer patients are informed their disease cannot be cured, but can be treated, thus prolonging their life. (Some may just be told that it’s time to get their affairs in order.)  In my case when I initially asked if I could take my first targeted therapy drug crizotinib forever, my oncologist thought I meant that I thought I would now go on to live a normal life and die of old age at 100 as planned. So she felt obligated to say no and went on to say that some patients had extended their lives by more than a year on this drug.  (I know someone that just celebrated six years on crizotinib!)  Also in my case though, and I’d guess most, just to know you might be given the time you need to think about all the things you should have already done to prepare for the inevitable gives you hope.  Hope = Time, but does Time = Hope?  Probably. I’ll think about that.

But as I said, “It’s weird.”  I mean, really.  People thought I was a goner for sure two years and four months ago. I looked like I was and everyone knows the stats are dismal for Stage IV lung cancer.  And here I am now looking quite healthy.  I wonder what people think – cured? Nope, I wish.  Do you do like the song says and “live like you were dying”?  What’s that look like anyway?  I wouldn’t want to live the way I was during the few months we thought I was dying.  Now if it means do all the things on your life list – well, now that would be great if one is physically able to.  What’d we do?  Got two Nigerian Dwarf goats (complete with a barn at home and at camp), modified Camp Gramma by having a mom there to help Gramma, and tried to get back to a normal life.  Eventually I stopped teaching to focus on my health.  Not on my life list, not even the goats.  Alpacas were though.  I’m so glad we got our goats!  They are just wonderful, fun, loving, and very entertaining.  Alpacas are much more work.

Another weird thing – clothes.  I was just starting to replace things from the fire when I got sick.  Now I don’t want to invest a lot in things I either won’t be able to use or won’t get good use of.  Silly?  Maybe.  (For example instead of replacing my Marmot down jacket I bought a White Sierra one that will keep me warm for the short time I’m out in the cold.)  And then there’s the fact that since radiation I can’t stand certain clothes.  Or that when my tummy bloats I just want my comfy pants.  I’ve solved pretty much all of it by buying a few of a few things that are comfortable and presentable enough, and have no metal so I can wear them around and even to appointments and leave them on for scans.  Footwear is a challenge.  Still working on that.  Weird, right?  Being challenged by knowing what to buy for footwear when you’ve been wearing the same size shoe for 50 years? Whether it is meds or cancer, my feet are not what they were, and that’s weird.

Yup, weird.  Like being stuck.  Feeling ready to get back to really living, but not feeling quite well enough to.  Just when you think you know what this life can look like, something changes. I know that happens from time to time for everyone, but it is a way of life for Stage IV lung cancer patients.  And all the while life goes on normally around you as it should be and as you want for it to.

There are more examples, but you get the point. Neither here in the present fully, nor there in my past where I lived fully for 58 years.  Not really knowing how to think about the future (except to be hopeful), living for the present, but differently.  Yet I am grateful to be here, to have hope, to be able to enjoy the everyday every day.  I’ve had so many firsts since my diagnosis  – I think I’m more aware of them now. A recent first is watching a family of fox kits.  But I’ve had many others.  Things that being given the gift of time, the gift of being able to be home, and the gift of being “well enough” have made possible.   Some people, many really, with this disease are not so lucky as to be able to ponder its weirdness or to be given this gift of time.  And yes, TIME=HOPE.  Always, always have hope.

Oh, yes!  I have checked something off my life list that I bet I never would have if cancer hadn’t shifted my focus.  I’m in the midst of publishing a children’s book that I wrote in 1991.   Very fun to think about.  Written in my past life, being illustrated (not by me – ha!) in the present, it will be ready in the future!

Here I am enjoying the everyday every day with Dan and the family, and feeling ever so hopeful about the future.

Normal must be overrated

Who really wants things to be normal anyway?  I never did, but then I didn’t really need normalcy before.  This normal isn’t new or normal in the typical sense, but it is my normal as I live with metastatic cancer.  And live well I must say.  To do so I’ve needed to develop many strategies and work arounds.  And I’ve had a lot of help.  But it’s all definitely worth it.  Quality of life really matters.  Maybe some of my strategies will work for others.

Learning and remembering your energy limits is important.  Kind of tricky too as it’s a moving target.  There are days I have great energy and some that I have a deep, deep odd tiredness.  Most days though I wake up, get myself going and go strong until noon.  After that?  Anybody’s guess.  I learned this week that I’m no longer able to push through it like I always did in my old life.  When I’m done, I’m done.  Kind of like a baby. And that is okay!  I prioritize and sometimes have bonus time for something more.

“Love what you do. Do what you love.”  I’ve always believed this makes great sense.  Well there’s lots of things I love, but can’t do anymore, or not yet in this “normal”.  That’s okay too because I’ve discovered I love lots of things.  So I’m focusing more time on the ones I can still do (like photography, being in nature) and maybe just adjusting how I do them.  And I’m learning and doing new things too!  Things like writing a blog! I sure have more time to read now, and I love to read pretty much anything.  I have four books going right now; one fiction, two health related, and one nonfiction nature-based.  None on education -that’s a first!

Shortness of breath, my huffing and puffing.  Haven’t really found good strategies except to go slow and steady.   Not likely to do much running this spring, but I am determined to do more walking in my new OrthoFeet sneakers.

And then there’s the digestive system issues.  When I first started crizotinib I took a few different meds before my system could tolerate it being there. Imodium went with me everywhere because I never knew when I’d have a bout of diarrhea. And no advance notice usually, so pads or disposable underwear, extra clothing, disposable wipes.  Carried my backpack everywhere.  That doesn’t seem normal, but it became routine. In addition to the clothes I try to remember to carry food that I know I can eat in case I can’t eat what is available.  With Queen Lorlatinib, my current targeted therapy drug, the digestive system issues are much less for me at this time. (Fingers crossed!)

Lorlatinib brought some new challenges that I’ve referred to earlier.  One, neuropathy, is common for people on chemotherapy drugs and for people with diabetes.  As much as I love to go barefoot, I cannot now, even in the house.  Anyone who has an inkling that they have neuropathy in their feet should start wearing shoes or slippers ALL the time.  I learned the hard way.  If you have hand neuropathy, try acupuncture – helped me tremendously.  I tried some of the ointments and cannabinoid oil, but I haven’t found something yet that I can say gives me relief from neuropathy.  Wearing gloves for any work and even driving, and keeping my feet well padded have worked best.  And, I just don’t stand still for long periods of time or do lots of peeling veggies as those as things that are sure to bother.  I’m so fortunate that I don’t have to try to work.  Luckily I’m a good sleeper, so it doesn’t bother too much at night.  Oh yes, and ignore the feeling that a tick is crawling on your ankles.  Or maybe not.  Probably just neuropathy, but best to check.  I spend a lot of time looking at my ankles!

Weight has been an interesting problem over the past 2 years, four months.  After the fire in the fall of 2015 I decided to only buy what I absolutely needed for clothing.  Then as I became sick I began to lose weight.  By the time I started on crizotinib (March 2016) I’d lost more than 30 lbs. and I’m only 5’0″ and wasn’t ever terribly overweight.  Between cancer taking its toll and radiation doing a number on my esophagus, I had a few months of not eating much, eating mostly liquid form foods, etc.  And, as far as clothes went, thanks to radiation I couldn’t stand anything near my neck or wear a bra. So my daughter bought me some size small stretchy pants and v-necked loose tops.  That’s been my preferred wardrobe ever since.  I eventually gained all that weight back when on crizotinib.

Weight gain is common with these drugs, but I had no idea what I was in store for with Lorlatinib when I began it July 2017.  Everyone I know on this targeted therapy drug (still in clinical trial) has had this problem to some degree.   I started out gaining a pound a week.  Yes, one pound per week! Eeek!  And it was not simply that I was feeling better and eating more, or that I wasn’t able to exercise enough. But,  thanks to the stretchy clothes I just moved to medium, keeping in mind my “fire resolution” and bought only what I needed.  I was beginning to feel uncomfortable with the extra weight.  By January I had gained 20+ since beginning Lorlatinib. July to January, as much as my pregnancy weight gain.  From March 2016 to January 2017 that’s a 50 lb weight gain.  (Both pregnancies combined!)  Without even trying to lose the 30 or gain back the 30 plus 20.  Finally, in January the trial nurse mentioned someone having success with a paleo diet, so I tried that.  (I wrote about it earlier.) Paleo works for this!  I immediately lost 8 pounds and haven’t gained more.  As long as I feel “well” I can do this.  As I’ve learned, weight loss from cancer and treatment AND weight gain as a side effect are common.  I work with and around this by eating well and wearing my comfy clothes.

Finally,while trying to understand this “normal”, I think maybe the greatest lesson and the greatest blessing that I’ve gained from this journey is that it is more than just okay to let or even ask others to do things for you. I couldn’t do anything for someone else and very little for myself when I was so very ill.  That’s when I began to truly understand what gratitude and expressing your gratefulness does, not just for you, but for those you’re grateful to.  People who care want to do things to make your life easier and brighter when you are struggling with something in life. I still want to do everything for myself, but I don’t feel badly asking for help or letting someone else do what I don’t have energy or strength to do.  I feel loved and grateful. And I like to look for things I can do that will brighten their days.

Late this week I go to Dana-Farber for scans, blood work, brain MRI, EKG, and oncology appointment.  Dan will drive and wait patiently for me every step in the day.  I will post an update, hopefully by the weekend.  The prayers,positive energy and thoughts of all who follow this cancer journey give me strength.

Baseball and softball have started for the children. Fun times for grandparents.   Finding joy in the everyday every day here with Dan, the family, the 3 little dachshunds, and Dottie and Matilda, Nigerian Dwarf goats.

 

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.

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Enjoying the everyday every day. Me. Now.