Gone. Not Forgotten

Lazzarevich Family Session (7)

Dear Friends,

It is with a heavy heart that I write you today.  On October 22, 2019 at 11:20 AM my Maria, my Wife, my light, passed away.  I was with her at her passing holding her hand, surrounded by family.

The last year has been a struggle for us all as we all watched Maria’s body and mind degrade.  She was always a shining light in my life.  Even on the hard days she would find a way to shine through if just for a moment.  The evening before her passing was especially rough.  I did not think she was going to make it through the night but she did because she was a fighter.  The next morning she ate and drank a light breakfast.  She spoke with Alexander and asked him to show her his show and tell for school that day.  This was an important moment for us all, especially Alexander, because I had told him to say goodbye the previous evening.  Alexander excitedly shared his show and tell with Mommy one last time.   A few hours later she was gone.

My world, the world, became a little darker with her passing.  But I am exceedingly lucky to have had Maria in my life.  I never thought I was going to be someone who would get married and start a family.  But when Maria was rediscovered in my life and we began dating, my love for life grew and I knew that I had found (or more accurately she found me) someone I wanted to spend my life with and have a family with.  Maria always wanted children, I was always apprehensive, and proposed we compromised and get a dog.  Maria was made to be a mother, she had the heart, brains, energy and personality to love and nurture a child.  And on July 16, 2014 we welcomed Alexander into our lives.  Maria was ready, she was excited, she had BIG plans for Alexander.  I was scared.  We were going to travel together, she was going to teach him Spanish and share all of her passions, hopes and dreams.  It was going to be AMAZING.

Three months later we were overshadowed by the diagnosis.  We were all devastated.  Things did not look good.  But, as we have all come to learn Maria was a fighter and the strongest person I have ever had the pleasure of knowing.   And so, for the next five years Maria OUT LIVED IT.  We traveled with Alexander, going to Hawaii, Florida twice to see the Magic Kingdom, Epcot and the Animal Kingdom.  We went to North Carolina with friends and family, California and Disney Land.  Maria and I traveled to Spain.  Maria went to Colorado to rock climb and Costa Rica for more adventures with her First Descents friends.  It was AMAZING, she was AMAZING.

Now here I am, Alexander is in bed sleeping, and I’m reflecting on our Amazing life together, next to a pile of used tissues.  I was privileged to have been with Maria for 13 years and  married to her for 9.   Together we traveled the world and met far too many people for me to remember all of your names. So please forgive me.  Maria’s personality drew people to her.  She would often come home from the grocery store and tell me about the new friend she met in the check out line. “I just have an approachable face” she would tell me.   And she did.  She always had a smile ready for whomever needed it, or had her tongue out if she was concentrating on something.  Even towards the end when someone would come into the room and speak with her, Maria would give them a smile.  She often would not remember the visit but I know we all remembered the smile.

I never thought I would get married but because of Maria I did.  I never thought Maria would proceed me in death.  She had the personality to move on to meet someone new or draw into her large LARGE group of friends.  I never thought we wouldn’t reach our 50th anniversary, let alone miss our 10th.  I never thought I’d lose her and have to raise Alexander on my own.  I was scared before, I’m terrified now.

But.  I believe if I can channel just a portion of Maria’s heart, of Maria’s light I can be a great father for Alexander.  Because Maria was a GREAT MOTHER even though it was too short.  So that is my goal moving forward, to be the father Maria wanted me to be.  I will stumble and I will fall but as long as I have Maria in my heart I know I will succeed.

So, now my friends I must ask something of you.  Maria biggest fear was Alexander would not remember the Maria we all knew and loved.  The energetic, kind, loving Maria we all fell in love with.  She feared he will only remember tired sick Maria.  Alexander loved, loves Mommy.  I know this because “Mommy” was his favorite word, he was always asking for Mommy, tired or not he wanted her affection.  So, in the years to come I ask you to share your stories of Maria with Alexander so he never forgets what a wonderful person she was and how much she loved him.

Now I must say good bye.  I hope my words have not cheapened Maria’s more eloquent writing.

Maria,

I love you and I miss you dearly.  This past year and the last few months have been especially difficult for me.  Please forgive me if I hurt you or did not spend enough time with you.  My deepest regret is that I was not more open with you.  I tried to share but more often turned inside.  Please forgive me.  I will do my best to raise Alexander the way you would have wished.  I promise to do my best to be the father and man you want me to be.

I will alway Love you.  I will alway miss you, now and forever.    You will always be my lil buns, my friend, my Wife.  I will always be your thunder calves, your friend, your Husband.

Love,

Tim

 

 

Stay With Me

Hola amigos!                                                                                                                                            Here I am speaking Spanish from the hospital bed because my friend Fabiola is here helping me type this. I feel I need to give you all an update about what is going on but I needed time to gather my thoughts.

A lot has been going on.  On Monday, we came in for me to get blood work, my regularly scheduled oncology appointment, and the plan was to start up on my new treatment.  Well, blood work came back looking bad.  My bilirubin was super-high again, as were other liver levels.  My white blood cell count was high, and platelets were low.  Based on these counts, my doctor sent me for a CT scan instead of treatment, so I went.  It showed growth in my liver and lungs yet again.  So, I was placed in the hospital.  Well, here I had an infection in my blood, and possibly my liver.  I went on some pretty strong antibiotics, and they did a procedure to remove some of the fluid from my belly – they also went in to fix/replace the liver stent they had put in before.  After that, they said there was nothing else they could do.  Stivarga and Opdivo (the treatment I was supposed to start)  was off the table because of my liver levels being so high.  That was a hard pill to swallow.  And because I was so out of it from being loopy from the infection and antibiotics, I didn’t even understand that at first.

Long story short – we have decided to go home on hospice.  This sounds so final, I know it.  It breaks my heart to eve have these conversations – but we have to do it.  Whether we decide to do hospice or continue “outpatient care”, I wouldn’t be able to be treated because my liver levels are so high.  I would likely have tons of side effects, feel crappier, etc.  And I know there are people out there who are going to recommend alternative treatments, supplements, you name it.  Believe me, I have read everything and I have tried it all.  Hospice ISN’T the end-all.  If my liver levels improve, I start feeling better, etc., then I can always revoke hospice and try another treatment.  For now, that just isn’t in the cards.  I am going to reach out to Dr. Kasi (guy in Florida/Iowa), and possibly to another doctor that I have seen here in Mechanicsburg to get some second opinions.  I already know that trials will not take me because my blood numbers are so wonky.

Believe me, friends, I have tried everything.  I want to spend some quality time with my family and friends, and I want to do it with as little pain as possible.  Hospice seems like the best and easiest way to do that, so that’s what I choose.  Is it hard?  Yes.  Is it permanent? Not necessarily.  But please don’t judge me.  I just need your support right now.  I have a relationship with God, and I know he is always with me.  I need you to be with me, too.

I love you, dear family and friends, and that will never change.  This is all very hard for me.  Please help to make it easier.

Hospital update

Hi friends.  I am still in the hospital, but there is “talk” about going home.

I had my procedure on Monday.  It went well.  They were able to find a blockage and place a stent into my liver, and bile started to drain right away.  They did something else while they were in there, too, that has to do with draining liver fluids into my small intestine.  That went well, too.  A few days ago my bilirubin was 8 and now it is 3.  This is good!

So now we have to get my pain under control.  I am currently on a pain pump and getting quite a lot of medicine.  Today we are going to work on switching over to pills so I can go home.  (Because I’m not likely going to walk out of here with an IV full of pain meds. Although we did accidentally sneak outside on Sunday. Shh.)

Yesterday morning I felt pretty good – went for a couple of walks in the hallway, and used my pain meds much less frequently.  Buuuuuutttttt I had some bowel movements in the afternoon that apparently stirred things up, because pain was bad again.  This morning I am ok.

I am worried about a couple of things.  1) my belly is distended.  This could be partly due to the procedure, but it started to distend over the weekend, which was before the stent was placed. Docs have looked at it and one thinks it is mostly air.  Others think it has to do with the procedure.  I worry because my belly looked like this when I was diagnosed.  2) my appetite.  I just am struggling with eating.  I’m trying to do things like carnation instant breakfast and what I like to call “sugar boxes” aka stuff like ensure and boost.  But I would love to eat normally.  Docs tell me to take it easy and eat small amounts, etc. etc.  I know the drill. I still worry  because I am so skinny.

Friends and family have been with me 24/7, and  this makes me a better me.  It keeps me distracted and gives me the opportunity just to catch up with people.  Thank you so, so, so much to Em and Tif for organizing  everything, and to everyone who has visited.  I love you.

Please don’t be offended if you text me and I do not respond.  I’m overwhelmed.  So many people text and ask and I just can’t keep up.  So please, read my blogs or ask Tim.  Again, I love you.

 

Now seriously, off to bed.

I’m in the hospital, in case you didn’t know.  I showed up in the ER Thursday night because bloodwork showed high bilirubin. My eyes being yellow and spontaneous throwing up were the catalysts that got me to the docs for fluids and bloodwork on Thursday, anyway.

This blog is going to be more “matter of fact” just because of time and energy.

I’ve had two CT scans, both showing progression in liver and lungs.  We figured, since my tumor markers have been  increasing. The liver business indicates  that there could be a blockage (or some blockages) in my liver, so the plan is to stent the liver to hopefully relieve some pressure and release some of that bilirubin that isn’t draining.

We don’t know what time the procedure will be, nor how many days I will need to recover.

I have been resting a lot.  Emily and Tiffany have worked their magic and I have had buddies with me at the hospital ever since we arrived at the ER on Thursday night. This has meant the world to me.  I don’t feel alone.  I even had a spa treatment today (friends washed my hair and painted my nails!).

And now, off to bed.

Maria

 

 

 

 

 

Tables and Buckets

I swear, I feel the same way almost every time I sit down to write a blog.  Where to begin? How to explain?  Like, does EVERY SINGLE ONE of my posts start something like that?  They do.  I see them.  I write them.

But we must get started somewhere.  So here goes!  I am going to do my best to be honest and transparent as I write this.

Current status:  Ugh.  I wish I could write something that didn’t sound like complaining.  But, honest and transparent, here we go.  So I’ve been on “typical” colon cancer chemo since March.  FOLFOX plus Avastin.  Initially, tumor markers went down and my scan showed shrinkage, which was great.  But my scan last week showed progression in my lungs.  I assumed and expected a “progression” scan because the tumor markers have been climbing again, and they have been pretty reliable for the last 4.something years.  The scan, otherwise, was stable (which is GOOD.  So, even though tumors in lungs showed growth, nothing else did).  Now.  Being on this chemo has not been fun.  It has been hard to know if I feel crappy because of 1) chemo; 2) cancer; 3) both.  The answer is probably “both”.  I don’t want that to be the answer.  I wish I could say that the chemo is destroying me (which it is), but it is definitely NOT the whole picture.  Why can I assume this (I mean, besides the scans and tumor marker tests)?  Because I don’t bounce back anymore.  I  used to have “crappy days” and “good days” and now I mostly just have crappy days.  I have pain that is not well-controlled, my fatigue is so severe that I fall asleep at the kitchen table during a conversation, I’ve lost weight, I’m weak, etc.  The biggest issue is the pain – it is a constant ache under my left ribs.  Sometimes it travels to my lower back.  It is making. me. crazy.  I have pain meds which I take; they help somewhat, but they mostly make me
tired
cranky
annoyed
irritated
depressed? miserable.

And they cause me to
lose my train of thought
forget words
not be organized

And they still don’t take away the pain.  So there are moments…MANY moments…that I am in too much pain to
stand
walk
sleep.

Let’s just leave it at that.  How, how, HOW in the world am I supposed to do much of anything….ANYTHING…if I struggle to stand, walk, and sleep?  Oh, and I’m using medical marijuana, too, since January.  Lots of it.  And that just adds to the drowsiness and inability to function.

I had a pain procedure last week that did nothing.  I hoped it would do SOMETHING.

But that brings us to the current plan.

Remember last year when I was going to see Dr. Kasi in Florida and he had my liver biopsied?  At the time, the report said most tissue collected was necrotic (dead tissue), so honest to goodness I kind of wrote it off and assumed that nothing would come of it.  Well, let me tell you a little about timing.  I reached out to Dr. Kasi about two weeks ago (who is now in Iowa; I have NOT been there to see him).  Just to update him, keep him in the loop, and to ask him a couple of treatment questions.  He got back to me within a day with questions of his own, and a sweet little email that said something along the lines of, “let’s check with the lab to see if we were able to grow your tumor.”

I had been praying to God for guidance; to help make decisions; to lead me to the best decision.  Finally last week I said, “God, I am so tired.  Can you please just give me an answer?  I can’t even think to process all of this information.”

And Dr. Kasi contacted me the next day (HE contacted ME).  Indeed they have been able to grow and test my tumors in the lab!  The results of this information have given us some treatment options that were not on the table before.  I mean, these treatments were not even in the same ROOM, let alone table.  That is, Dr. Kasi has data that shows that MY tumor cells are sensitive to certain chemos (and other drugs or compounds), at least in the lab.  This is pretty huge, because 1) options. 2) gives us a place to start, since it is time for a treatment change. 3) data.  Doctors love actual data.  4) options, you guys!!!!  The drugs that “work” seem to fall into three categories/buckets.  Our plan is to start with one, see how it goes.  One of the categories includes a pretty common chemo called doxil.  We are going to try this on Monday unless something changes between now and then.  Doxil might be a scary chemo…we already have a lower dose planned, and I am armed with a couple of strategies to help minimize side effects.  I will likely lose my hair.  Other side effects – nausea, vomiting, fatigue, blood counts dropping – the usual culprits.  Also a chance of hand/foot syndrome and mouth sores.  Other side effects or issues could happen as always, but my docs and nurses are great and keep an extra eye out any time there is a change.

So that is that.  In the meantime, I have been trying my very darndest best to distract myself and keep myself “busy” so I don’t think so much about my discomfort.  First of all, we celebrated Alexander’s 5th birthday last week.  It blows my mind that we have a 5-year-old.  (And that, my friends, is an entire separate blog post.)  We’ve been trying to do family things this summer – friends have been great with visiting, or inviting us to swim, play, boat…some of these things I can do with Tim’s (and friends’) help, despite my pain and limited energy.  Tim plans “date nights” that consist of escape rooms and sitting down to eat or enjoy some ice cream – these are a great distraction, too.  Honestly, I just struggle so very much because I feel like I can’t do things.  I’m trying.  But you know me, people.  I have never been sedentary.  This “lifestyle” is not mine.  “Doing nothing” is the hardest thing I’ve ever ever ever had to do.

So enjoy some of these “normal” photos, because the “sedentary” ones of me sleeping for hours on the couch while everyone else does life are not likely to be posted.  Or taken, for that matter.  And pray hard about the success of my upcoming treatment.  Please.

Clear as mud

Ok, peeps.  A quick update because I’m motived and thinking about it.

  1. I had a scan.  Scan was good.  Stable plus a little lymph node shrinkage (yay).
  2. But I’m still pretty miserable – pain, fatigue…the chemo has been really really REALLY hard on me.  My body is just beyond exhausted.
  3. Went to the University of Maryland yesterday to meet with another doc, but nothing new to really discuss.  Unfortunately.
  4. I decided to take a chemo break.  We are headed to the beach in a couple of weeks.  I want to feel as OK as possible on this trip, so I decided no chemo tomorrow.  So say some extra prayers that my energy increases, my pain decreases, and I get some really really good days in the net couple of weeks.

I’m tired, so I’m done writing for now.  Love you.

Back on chemo

I’m not dead, so there’s that.

I started back on chemo about a month ago.  It is miserable, but it’s a different kind of miserable than what I was feeling a couple of months ago.  Maybe it’s a better kind of miserable.  I’m super tired on the chemo, for an entire week, and then I start to have some good days.  And then I have chemo again (every two weeks is the line-up).

When I say “super tired” I don’t just mean I need to take a nap.  I DO need to take a nap.  Or several.  But I’m also kind of just weak and slow and I can’t stand for a long time.  Heck, sometimes I can’t even THINK for a long time.  It is amazing how physical fatigue starts to creep into the mind.  There are days when the mental exhaustion is far worse than the physical.

Because chemo sucks and I want to improve my quality of life, I went to another oncologist in Mechanicsburg…based off a recommendation.  I expected the consult to focus on alternative means (high dose vitamin C, medical marijuana, etc.), but this guy ended up recommending different chemo regimens.  One, called metronomic chemo, is low-dose and pill-based.  The other option he suggested is to try chemo drugs that are meant for pancreatic or ovarian cancer, because he thinks my cancer is acting more like pancreatic or ovarian AND I have that BRCA2 mutation (ovarian and pancreatic cancers typically carry BRCA mutations).

This guy was interesting.  Extremely soft-spoken and pensive.  Like, he was thinking and problem-solving the whole time I was there.  Quirky.  Maybe that’s ok, and a good way to look outside the box.

My doc at Hersey did not agree with this guy’s recommendations – and that’s OK.  I’d rather her be honest with me.  But it STILL gives me some different options on the table, and something to research.  Because maybe we can tweak these recommendations to make them worthwhile.

Oh, and guess what.  My tumor markers went down.  Like, a lot.  CEA went down 75 points.  CA19-9 went down 200.  TWO HUNDRED.  I know I’m not supposed to play this numbers game, but when my doc told me how far the CEA went down, I cried.  Sometimes not all blood work pops up at the same time…so when that CA19-9 showed up, my nurse coordinator and PA literally came to find me at treatment to tell me.  (I think they are excited about these numbers, too).  I haven’t seen my markers DECREASE in well over a year, so this encourages me SO MUCH.  Are these exhausting days worth it?  Maybe.  At least for now.

Also – I just have to say thank you to everyone who has stepped up to help us lately.  The regulars, of course – mom, Liz, Pete, Thomas – but also Christi and Nicole and Alexis and everyone who’s been visiting or staying over or stopping by to play with Xander.  Thanks to the meal-makers and gift-card-givers, as you are saving me the stress and energy it takes to plan and prep meals.  Thanks for EVERYONE who texts me randomly to ask if I need something.  And thank you to some very special retired friends, Debby, Sue, Kristi – they have been taking my butt to and from chemo, they’ve been shopping for me, they stop to visit and keep me company…you guys are awesome.  Thanks to the friends who stop by for a beer and a a board game while I’m on stupid chemo.  And thanks to all of you who I’ve missed, because goodness knows I’ve missed someone.  Please know how much I appreciate EVERYTHING.  As much as I wish I didn’t need it.  That’s how much I appreciate it.

Asking too much?

People have been reaching out to check in on me, which means it is probably time for a post.  It has been maybe a month-ish since I have posted?  Which means it has also been one whacked out 4-week-long roller-coaster ride.  Some things better, and some things….well, some things.

I finished up radiation and it really messed me up – more than I anticipated.  The whole time on radiation, I wasn’t having any other treatments so as not to compound possible side effects.  Good thing.

After radiation, we switched up some pain meds and tried a short-term steroid, which motivated my butt into gear a little bit.  A couple weeks on that bad boy helped TREMENDOUSLY.  Went back off of it for awhile because of the possibility of starting a clinical trial, and started to feel crummy again.

The clinical trial – at NIH – fell through because there is no good/safe spot for them to get a biopsy.  Crap.  One of the reasons I have NOT started back on meds was the possibility of that trial (most trials require a 4-week wash-out period of all other meds and treatments).  But, Hershey is awesome and has my chemo lined up for me on Thursday.

Yep.  Chemo.  My good old friend.  Why chemo?
1) Chemo has been my best bet in the past.  Especially when I was first diagnosed, I was a great “responder”.

2) I’ve been off of chemo for SIX months.  Is that crazy, or what?? That time “off” might just be the ticket to “reset” my body and re-sensitize the cancer to the chemo.

3) During that time “off”, I’ve been on a PARP inhibitor, which literally is supposed to change the cancer’s DNA.  Change hopefully means damage and increased sensitivity to that chemo and increased death to cancer cells.

4) Also during my “off” time, I’ve been on immunotherapy.  That alone could have changed my immune system to make it more aware that cancer is the bad guy…so go get it.

5) I kind of know what to expect.  I’ve been on chemo.  I know what the side effects could be.  So, let’s pray for the absence of these possibilities:
-neuropathy
-nausea/vomiting
-general “crappiness”
-stomach pain and cramping
-diarrhea or constipation
-hair loss
-mouth/throat sores
-fatigue

This chemo plan is a little bit different than past “plans”, but I can have similar expectations.  I will be on FOLFOX plus Avastin this time.  Past combos included FOLFIRI plus Avastin and FOLFOXIRI plus Avastin (you can tell they are all related, right?)

Am I happy? No way.  Is it a plan?  Yes.  Am I trying to envision those pac-man guys eating the cancer cells again? For sure.  Am I scared?  Yes.  But I’m more scared of NOT having a plan. Right now, I need for this chemo to work again.  I need so badly to have some kind of an immediate sign that it is working.  For my mind’s sake, and for the sake of my poor family.  Am I basically asking for chemo to work efficiently on those cancer cells without wreaking havoc on the rest of my body? Yes.  Yes I am.  Is that asking too much?

A Bazillion Better Days

I find myself sitting in a quiet house here this afternoon – Tim took Alexander climbing, and Thomas went to work.  I figured today would be as good a day as any to fill you in on the shit storm that I/we have been living through.  It’s at least a kind of therapy for me to write it all down.

And then my dear friend Kara called, and I’ve already had my therapy session! ha!

But no, for real.  Things have not been great.  I have been struggling – physically, mentally, emotionally.  I think the last time I wrote was after coming home from Costa Rica – things weren’t great then, and they have not improved.  I have pain; my fatigue is incomprehensible; my appetite is not good and I’ve lost weight.  I’m angry and guilty and heart-broken because I can’t do what I want to do – everything is hard.  I mean simple things, too, like getting Xander ready for bed, or making a quick meal.

And it is so hard to know what is causing what – is it the Lynparza? The cancer? Are the pain meds making me super groggy?  A combination of everything?

Oh, and I started radiation last week.  See, in the beginning of January I had a scan that showed progression, especially in lymph nodes in my abdomen.  Long story short, we are radiating those SOBs.  The goal for radiation is 1) help reduce some back/abdominal pain, and 2) combining radiation with PARP inhibitors (Lynparza) and/or immunotherapy (Opdivo – that’s the infusion I’m getting once a month) could help my immune system recognize that ALL cancer cells are bad…not just the ones in those lymph nodes.  I have four more radiation treatments.  Yesterday and the day before they made me throw up, but today I took ALL of the anti-nausea meds and so far so good. (I’m just waiting for the constipation to kick in now. ha.)

I’m a disaster.  I find myself sobbing every day.  For myself, sure.  For my mom and Tim.  But mostly for Alexander.  I can’t be the mommy I always saw myself being.  I keep trying to find new ways to spend time with him that show him how much I love him.  I just don’t want him to always think of me as “sick mommy” or “tired mommy”.  He has seen me cry and has heard my worries more times than I care to admit.  I wonder if all of this is going to hurt him in the long run.  I wonder how many times a heart can break before it completely stops.  And I wonder if it will ever get better.

Thing is, no matter what the end result, I suppose this is temporary.  But I sure want to have some a bazillion better days here on this earth.  I want to take my kid for a walk and cannon-ball into a pool with him.  I want to cook a meal for my husband without having to sit down to rest.  I want to laugh with my best girlfriends and I want to get a little tipsy drinking wine and I want to read a good book on the beach and I want to dance to Disney music in the kitchen with Xander and I want to take my mom on a fabulous trip.  I want the old Maria back.  I sure do miss her, and I’m pretty sure everyone else around me does, too.

I wish this post could have a little more joy in it, but I don’t have the energy to pretend; also, I’m sure you appreciate the honesty.

People always ask how they can help.  Right now we somehow have an influx of food in the fridge and freezer from wonderful family and friends.  I have recruited a handful of energetic, retired friends to drive my butt to and from radiation and appointments.  So we are good there at the moment.  But if you live near my mom or Liz or Thomas, you can give them a gas card or something to help with all of the traveling back and forth.  You can shoot me a text to figure out a day to come visit – because I still like people.  And you can check out this website about Thea Bowman.  She’s up for becoming a saint, but needs a couple of miracles.  It’s a Catholic thing, but the idea is to pray that God works through her.

I’ll try to post again soon.  xox

The good, the bad, and the unknown

The good, the bad, and the unknown.  Where do I even start?

I’ve been on Lynparza for about 7 weeks now?  Ish?  And, as expected, I feel CRAPTASTIC.  You guys.  So much fatigue.  Back pain.  Belly pain.  Digestive discomfort.  Even a little puking.  Losing some weight because my appetite SUCKS.  I’ve had one immunotherapy treatment (the next one is this afternoon), but I don’t think any of my issues are a reflection of that.  Immunotherapy, by the way, is a walk-in-the-park infusion as compared with my 6+ hours plus 48 additional chemo hours that I’m so used to.

A few weeks ago it snowed.  The day after, I had enough energy to take Alexander outside before the fresh layer of snow had been tainted.  It’s a special kind of joy, that is…you know, walking on a crisp layer of unadulterated snow with your four-year-old.  Flopping backwards to make snow angels.  Sledding down the school hill. Building a tiny snowman.  And having the energy to do it!

The week of Thanksgiving was rough – I was super fatigued and trying to prepare for Costa Rica.  I almost backed out.  Almost.

But I didn’t.  I went.  I lived.  I laughed.  You guys know how I feel about First Descents.  Last year, that trip to Colorado rejuvenated me.  It reminded me of all the things by body CAN do.  I met people who truly understand.  I came home a better version of myself.

This year was different, but not in a bad way.  This year, my body was tired.  I needed to bow out of some activities, which is totally not Maria-style.  I needed to rest a lot, and I needed to honor my body when it needed to sit down.  But despite all of those things, I white water rafted, rode horses, kayaked through the mangroves, surfed, and ziplined.  I met a new crew of wonderful, wonderful people who are now my family, and I miss them dearly already.  These people made me laugh and cry.  They encouraged me when I pushed my body past its boundaries.  They hugged me and listened to me when I was so pissed at my body, it made me want to explode.  These people reminded me how FUN I can be – they laughed at my jokes (imagine that!) and made me belly laugh until my diaphragm hurt.  They reminded me that I needed that trip for myself, no matter how guilty I felt going.  They allowed me to rest and didn’t push me or judge me for it.  Why?  Because they’ve all been there.  Because they can relate like no others.  FD family accepts everyone for who they are – the good, the bad, the unknown.  I can share exactly what I’m thinking, no matter how scary, and I don’t have to explain myself.  I once said that FD is magic, and I’ll say it again.  I’m honored to me part of it!

This week has been challenging.  I made my body do soooo much last week, and now it hates me.  I even had to come home early from work yesterday to sleep (again, totally not Maria-style).  I’ve had to let everyone around here do MY jobs, which KILLS me.  I’m trying my best to be kind to myself, but I’d be lying through my teeth if I said that was easy.  Mom and Thomas reminded me to focus on what I CAN do.  Just like First Descents does.  Like, maybe just for now, I have to be content with folding laundry.  Reading to my kid.  Talking to good friends.  Resting.  Loving with everything I’ve got.  Because no matter how tired and broken my body is, I can LOVE, and I can love HARD.

I have bloodwork today, a doctor’s visit, and treatment.  Say a prayer that bloodwork is phenomenal, that this miserable pill is doing its job, and that I continue to gain energy as we work out dosing and whatnot.  Maybe pray for more good, less bad, and answers to the unknown.  Much love to you, friends.

 

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