January, the start of a new year, a time to set goals or resolutions, reflect on the past year….really not sure why you would want to even attempt to think about the shit show that was 2020, but yet, here I am. We are two weeks into a new year, a clean slate, and a fresh mind. The last several Januarys have been hard for me…..REAL hard. I’m a weirdo with dates, and January has quite a few that sting, and sting more than just a little. I think that’s why, for me, a new year really doesn’t set in until February. At least that’s how I have felt for the last several years ,but I am finally putting a pin on it.

Today specifically has me compelled to share. I recently started a “new” medication that basically makes me feel like I got hit by a bus. I have taken it previously, so I knew this was coming. I guess when I started it last week, it didn’t really hit me yet that tomorrow is the first of the significant January dates. As I have shared before, grief takes over for me DAYS before John’s Death-iversary. Couple these two things with having worked from home for 10 months with no real structure in my days, and I’m a hot mess today. I have stayed busy with a few meetings this morning, but had to unplug for an hour mid-day before I decided maybe I should shower and get ready.

Tomorrow is John’s second RE-Birthday. For those of you new here, or new to our journey in general, when one has a Stem Cell Transplant, the day of the infusion, or the first day of a series of infusions, in John’s case, is considered Day +0, and the day the patient is given a new immune system. For us this was a BIG day. Not many people require one re-birthday, much less two. Looking back to FIVE whole years ago, we were so blessed with the opportunity for John to get another chance of life without cancer! It was a real bumpy road to Day +100 when we were allowed to move home from Chicago, and I’m not talking about Illinois roads! John only got to see the first anniversary of his second re-birthday, and for that extra year with him, I’m extremely thankful!

Aside from the hoopla of a fresh immune system, we know that John had the immune system of a babe..but walked around in the body of a 41 year old. We went through sanitizer like crazy, he wore a mask when he went to the store, and he stayed home when he didn’t feel well. Even with taking these precautions, he took his last breath on January 18th, 2017, which means his death-iversary is coming in hot. Coming in hot with the days and daylight passing quickly, and coming in real hot for my emotions. I wake up every day knowing that he isn’t here and still thankful for the time I had with him. But for some reason Griefy McGrief taunts me. It’s not that I sit home consumed with it for a whole week, but its something that just lingers in the back of my mind making me feel like ass. Then suddenly on Monday, (as it falls this year), I will feel completely fine after I make a stop at the cemetery. It’s so effing weird…and annoying….and all the other feels too. Its one of those things where, “if you know, you know.” And I really hope you don’t!

I am reminded of one of my favorite little boys, and a conversation he had with his mama. “John didn’t get to live a full life. I know God has a plan, but I don’t understand it.” For me, its the silver lining that because John’s not here, I get to see this little dude AND his sister far more than I would have if John was here. (Along with some other sweet kiddos and their Mama too). Not for any particular reason other than life. Life happens and it pulls people in different directions sometimes, and that every Friday night dinner starts to skip a week or two. I try to remember that in John’s absence I will do what I can to keep his memory alive and make him proud of me.

Sometimes I just feel like life isn’t fair. Like today for instance. Most days though, I am completely adjusted to this new life and thankful for the people that are in it. I’m ready to skip through the rest of January and move forward each day with big goals both personally and professionally, and try to shake off the grief and Just Keep Livin.

Well, about a month ago, I posted in regards to the lovely Coronavirus, and our stay at home order.  We now have another month to go, and I have formed some OPINIONS.   Let’s be real clear, I respect what everyone chooses to do for their family.   Only you know what is best for your family, and that’s 100% ok by me.  You do you!

In my last post, I noted that it was like I had already been prepared for quarantine….4 years of chemo treatments and 2 Stem Cell Transplants will do that, I suppose.  I am sharing some similarities/differences  between transplants, and how that relates to this quarantine, or shelter in place order.

I’m just gonna put it out there that I think a continued shelter in place in Central Il seems a bit extreme to me.  I am basing this on numbers from the interwebs, and experience caring for someone who was immune-compromised.  Tazewell County has about 131,000 people, and 41 cases of the Rona (0.03% of the population affected).   Cook County ( which is actually where John passed) has 5 MILLION people, and about 39,000 cases of the Rona (0.7% of the population affected).  Basically, what’s right for one part of the state isn’t necessarily what is right for the entire state.

Again, you do you….if locally, they decide to “open things up”, and you don’t feel it’s right for your family, don’t go out.   I have friends and family on all spectrums of this thing.   Some who wipe down their groceries, some who haven’t left home but for a grocery pickup, and some who have thrown caution to the wind.  Will everyone continue to do these things?   Possibly…. Look, I’m actually kinda pissed I can’t get a grocery pickup in a reasonable time b/c EVERYONE is doing it now!  Do I think one round of shut down was necessary?   YES!  Have we flattened the curve?  YES, I think so anyway.

I, personally, have mostly followed the stay home order.   I have gone to the grocery store about weekly, following distancing, and sanitizing throughout my trip.   I have spent time with some friends who also work from home and also my parents.   I have essentially been in 3 homes since this started, and then my office for about an hour or 2 every 10 days or so….and no one else is there. Yes I have also supported a few businesses with take out, and a drive thru McD’s coke when the mood strikes.

So, here’s the thing….if the Rona can cause the most damage to those who are already previously compromised….These are the people who are already taking precautions!  For those not familiar, a Stem Cell transplant erases your immune system completely, and starts over with fresh cells and marrow.  We had strict instructions after John’s first transplant.   Instructions after the second were’t as strict, in my opinion.  Did we follow them 100%??? Nope, but only b/c John himself was willing to take the risk.  So, you may find some of these things interesting, because I sure did!   LOTS of dietary restrictions as far as what is safe to consume.  NO fast food.  NO buffet’s because those things have a sneeze guard for a reason.   NO pizza delivery because who knows whats going on inside that warming bag??  NO fresh broccoli, frozen is ok…NO leafy greens without being thoroughly washed.  NO fresh berries, but frozen was ok.  And the worst part, NO beer for 100 days post transplant.  Now, after the second transplant we were allowed to order take out while IN the hospital, and I don’t necessarily recall the strict food restrictions, but we followed the first round instructions anyway.  He was also to avoid crowded places, grocery stores, malls, and had to wear a mask when out in public, and sanitize often (sound familiar)?   “Rules” were different for transplants simply due to the number of people they treat in each region.   Peoria has 3 transplant beds….U of C had 40 transplant beds at the time, and now has almost 80, I think.

Essentially, John avoided school aged kids (aka…germ factories),crowded places, ate home cooked meals, didn’t do the grocery shopping, sanitized frequently when visiting with anyone, and wore a mask in public.  Now, what did he ultimately die of?   Death certificate says Lymphoma, followed by Influenza.  Influenza that he couldn’t shake for 6 months before his passing.  Could we have taken better precautions? Apparently.   Who knows how one could get Influenza in the middle of the summer…..but lets be honest, weekly clinic visits probably didn’t help.

I really don’t think that anything is going to open up balls to the wall anytime soon.   But I do think that if a hair salon wants to open up, and its stylists are willing to take extra precautions, as well as its clients, then so be it.   I personally feel terrible for my lash artist and hair stylist who have been out of work for weeks, and are incredibly passionate about their jobs.  Something I learned in 4 years of care taking and counseling is that self care is SUPER important!  Not because I really don’t want to know my true hair color, or because I have one lash extension hanging on for dear life….but because these ladies, and anyone else in a non essential business, deserve to be able to make their own decisions for their family, just like the rest of us.  Then there’s nursing homes…..I have two loved ones who are basically in lockup with limited familial contact.   I may have to do another post just on nursing home protocols during this time vs normal times.

In conclusion, as a person who endured two transplants, and basically had a 3 month old husband TWICE.   My personal opinion is that the average Joe isn’t at as great a risk as has been portrayed in the media.  Those who are more compromised are very likely already taking precautions.  I feel comfortable going to the store to get my groceries since all the other ass hats in this town have scooped up all the grocery pickups.  Will I wear a mask when required?  Yep.   Will I sanitize?  You betcha!  Face it, the Rona isn’t just going to disappear.  We have done our best to flatten the curve thus far and as time is passing, treatments and vaccines are being developed.

You do you, and I will do me, but don’t forget to    #WashYoHands

 

Welp, what better thing do I have to do on this Spring Saturday afternoon, while awaiting the storm…..share my thoughts on all the cray.   It’s currently about 3:15pm, and Im deciding if I really NEED to shower today.  I have been giving my eyes a break from my contacts, so have primarily worn glasses for two weeks…now my face is breaking out where my glasses hit my nose, so there’s that.  I’m pretty sure I brushed my hair, and my teeth yesterday.  Tell me I’m not the only person with similar issues????

I have been on the “work from home” order since March 16th.  While I enjoy a good work from home day on occasion, so I can get a few errands done, or get to that mid-morning dr appt, I am NOT a good candidate to work from home on the regular.  Throw in all of my company’s travel restrictions and ability to do a virtual meeting, and my schedule got cleared QUICK.  I have gotten myself into a bit of a work routine, but still had a day where I didn’t have time to shower before my 9am meeting, which I took from my living room.  My love seat, or chair and a half, is now my office.  I never sit in it… so its cushions are still nice and firm, not all broken in like my couch, its near the window so I get some natural light, and right next to Alexa, so I can have some tunes for my commute.  Leggings or pajama shorts and a sweatshirt have become my new work uniform.  Starbucks being closed has me rationing my home coffee supply of Starbucks Cold Brew concentrate…..I wouldn’t recommend having more than one of those, b/c I’m sure not active enough to not feel jittery by mid morning.

I have found that in being home ALL DAY LONG, I can’t stop snacking.   If I come out of this thing not gaining 20 pounds, I’m calling it a win.  I did make a grocery store run, once each week that I have been home, so I do have fresh fruits to snack on, but also snagged some PB Cup eggs which are in the freezer.  Pretty sure those cancel each other out at some point!  I don’t mind cooking at home, as I generally feel that it’s better than eating out, and have been doing much better with eating at home over the last few months.  I’m just not a fan of always having dishes to do!  I did support local restaurants a couple of times, but struggled with whether or not I needed to put on a bra and real pants (not pajama shorts) to go for my curbside pickup.

After the first day, I had this master plan of taking a room to purge/clean each day.   This week, it was confirmed by a friend that these here are weird times, and there is no reason to get all organize-y about things.  Good thing I hadn’t quite started making my way through the house yet!  Bare minimum each day is just fine, this is the time to get some of those old episodes off of the DVR caught up, and sign back up for Netflix!

Generally speaking, contrary to what my FB timeline seems to show, I’m a full on homebody.  I do like to go out with friends, or hang with some kiddos, but man, I sure like my house, and my comfy clothes.  And now my lack of dating is all making sense.    ha!!  Anyway, I have kept up with my normal texting with friends and family.  I cancelled my trip to the beach, which I had booked on a total whim.  I know I will be able to reschedule when all this shakes out, but man, it sure doesn’t calm the burn of my FB memories from the last couple of times I have gone over “spring break.”  It has been fun getting creative with social contact.  Group FaceTime drinks and a chat on a Friday night (or was it Saturday?) was a perfect way to catch up with some girlfriends, while social distancing.  A virtual dinner with my besties kiddos was SO fun last Sunday.  It was just as if I was in their house and the boys were each trying to get my attention, while avoiding eating certain parts of their dinners.  This afternoon they got out of the house for a little bit an swung by with ice cream.  They stayed in the car, and I stood outside and visited with them for a few minutes while we all enjoyed our treats!  Yes, we all wanted to visit a little longer. Yes, I would have loved to help them with the Lego sets I Amazon’d them this week.   Yes, I would have loved a hug when they left.   but ya know, we had to get creative, and when I said hopefully a day this week would be nice and I could do a “drive-by” while they are playing outside, Mason quickly decided that I could bring them ice cream, too!

All in all, while this all is a giant pain in the ass, and super hard for the person who lives alone, I feel I have been prepped for this for years!  Listen, if John could spend 19 days in a hospital room the size of our living room, with very minimal contact with anyone besides me, we can social distance for a couple weeks.  If I can live in Chicago for 107 days for transplant #2, with only having visitors once or twice, I can stay at home for a few weeks.  If I can basically live in a hotel for a month while spending 9 or 10 hours a day in an ICU room, I can stay in my own dang house, and not have to commute in Chicago traffic.

If I’m stuck at home more than another week, this could all very well change.  I could go stir crazy, I could purge my whole house, I could go on an online shopping spree, I could just sleep 20 hours a day….who knows!  The possibilities are endless!  For now, I’m gonna hunker down with some Netflix, and prepare for my evening nap!

 

 

 

 

Here we are at the end of another year.   We are quickly approaching the 3 year anniversary of John’s death, and my next chapter in life.  Not only will it be year 3 of widow-hood, but I am dangerously close to turning 40.  FORTY!  eek.   To say that my life is quite different at 39.875 than I had imagined is an understatement.   I’m not sure why, but this year, I feel compelled to set some goals.  Call them life goals I suppose, I just know it won’t be a New Years Resolution!

In spending some time chatting with the bestie (for a solid 20 minutes, sans #mylittleboyfriends), I let it be known that I wanted to have some goals for 2020.  I don’t have a solid list composed just yet, but one of them is definitely to read more.   Specifically, read 6 books in 2020.  I also noted that maybe one should be that I shouldn’t procrastinate so much.  She immediately tossed that one out!  You guys….apparently I put on a real good show…. because I want to be organized about life, but whew, I sure wait til the last minute on ALL.  THE. THINGS!   Maybe I just work well under pressure, so it looks like I have my shit together???   I dunno….. at any rate, I will toss that one out, per her exclamation.

I’m not sure that I will share all the goals here, but maybe blogging a bit more often should be one of them.  There’s something about yelling to Alexa to turn on some music, and kicking back and getting life off my chest for a few.  Side note, who else treats Alexa like the jerk that cut you off on the road?   Just me?    Ok then.  While I really don’t know why I feel prompted to set some goals, I think it will be good for me.   We are required to set goals at work, even though the vast majority of our work is dictated by the top leaders of our company.  We have to be very selective about how things are worded and can be measured.   Perhaps because of that, I want to transition the goals to my real life, and thus be able to check them off the list WHEN I accomplish them.

I’m certain I will come up with some fundraising goals, which will be shared with the respective committees.  Having the first events under my belt has my mind swarming with ideas to put on a list for 2020.   I want the events to grow, and working with a better idea of costs and timing will hopefully allow both events to do just that.  Lessons learned from both events have been noted, both pros and cons and with any luck, we will improve things all around next Fall.

I am hoping that having set goals for the year will push me to be a better person.  I really don’t care who you are, I feel like everyone can find at least one thing to make them a better person.  It may be a being a better person on the outside through external actions, or it could be being a better person on the inside through self development.  Both can include diet and exercise, which are things I really need to get back on track after all this holiday food and dranks!  I want to use 2020 to give me a re-set and a clean slate for the years ahead.  (I mean, FORTY.   BLEH!).

I don’t know what my future holds but I know that moving forward I want to be intentional about the things that I do, or don’t do for that matter!  Life is crazy, crazy hard sometimes.  The only thing that I can do, is do the best that I can in setting and accomplishing goals in this giant work in progress.  2020 shall be a project… a project that follows what I called the “year of Stacie”. A project that will hopefully help me be the best friend, daughter, “aunt”, fundraiser, scheduler, brutally honest person that I can be!

 

 

 

 

Holy Smokes…. Here I am on a Sunday afternoon, iced coffee in hand, Alexa playing some Luke Combs (b/c I love him!) on a sleep in Sunday, b/c not waking up to an alarm gives me life!  I haven’t felt super compelled to blog this year, apparently, and I’m not sure why.  Maybe I have just gotten through the shit, and have embraced MY normal.  Maybe I have forgotten what an outlet this thing is….and when life got real cray this week, I feel like I need it…..who knows.   At any rate.. here I am , blogging it up!

I am feeling the heat of being 1 and 2 months out from my first ever fundraisers for Illinois CancerCare.  I am pumped to be getting the golf outing filled up, and actually feeling sort of organized for Totes for Ta-Ta’s, but know there is still a lot to be worked out.  If you know me…. I know this will all fall into place…. but I am still a stressor-outer that things aren’t going to go as planned.  I know that in the end, when I can write fat checks to the cancer center, that it will all be worth the stress!  I can’t even express what a blessing it has been to be able to coordinate these events.   I know that John would be SO proud of me for getting out of my comfort zone, and giving back to a cause that is so close to our hearts.  I can’t wait to make #lymphomaisaloser a real thing…. a legit non-profit….but must wait til Fall/Winter because I’m gonna need to actually focus on the plethora of paperwork that that is going to take!

Work has gotten extra crazy lately, which I am happy about….busy is always better for me.  But it reminds me how this last year has been without Rob.  Death-aversary is always a struggle for me…death-aversary week actually, bc even if it isn’t on my mind directly, its back there somewhere and sneaks up on me.  Tomorrow will be a year since we lost Rob, my work bestie, and roommate of 6 1/2 years.  Also this week is the 2nd death-aversary of losing my Momaw, and a reminder of what a mess 2017 was for me.  This week brings up SO many great memories, and it’s those that push me through the extra stress of work getting busy, fundraiser planning ramping up, and just general life crap.  While it frustrates me that Rob is no longer here to help pass the time on the slow days, and that I can’t just shout across the office to get a quick answer about something, surely to get a snarky comment back…….It makes me giggle when I think about our stupid “slow day” shenanigans, like hallway bowling with highlighters and a stress ball, or the time we took a bunch of pics with a cardboard cutout of Albert Pujols and put them in a frame in Brian’s office.  My Momaw didn’t even know who I was the last few times I saw her….”but she sure is pretty,” kind of offset the heartbreak of hearing someone who you spent your entire childhood at her house, say she doesn’t know you.  I try to remember how lucky I was to get to spend that time with her….how I felt more comfortable telling her I had gotten my belly button pierced than telling my mom, how she loved my joining her for Tuesday Chinese lunch…. how she altered my wedding dress, and made my wedding cake.   I’m most thankful for getting to help her make Randi’s wedding cake, and how that sparked me to bake on my own when I had time.  All in all, this week makes me realize what its like for other people  on the anniversary of John’s death in January.  All of the memories that it sparks, and things that they wish that they could have told him, had they had the opportunity those last few months.

Grief is a part of life. It’s a giant asshole, but there is no escaping it.  I feel like there is a standard grief, and then there is the grief of a widow.  The extra things that are required as a spouse, and certainly a widow with children.   As if I didn’t have enough to do in my free time…. I recently started a secret FB page for local widows.  Just a place for us to share experiences and lift each other up and is totally judgment free….It’s crazy how other W’s just get it.  There was no-one for me to compare notes with after John had passed, and my hope is that those who aren’t as far along in the W life as I am will be able to find some sort of hope that things WILL get better or maybe easier, once you get through the storm of an initial passing.  Look, if I made it through 2016-2017 without going 2007 Britney, these ladies can make it too!

All in all, I’m still feeling Stronger Than a Fifth of Whiskey on most days.  I’m at a point in my life that I realize that reciprocated relationships are so very important.  I have always been honest to a fault, but I think that is even more true these last few years after losing John.  If you don’t want my real opinion…..don’t ask!   I realize I am totally blessed to have relationships that have gotten so much stronger over the last few years.   I don’t take a single second spent with my favorite kiddos for granted.  I know that while I don’t have John here, I have them to take care of me when I’m old!  (ok, mostly Mason, b/c that kid just gets it).  I love it when the kids want to share a funny story, or try to make me laugh….which isn’t a hard task on most days, and is normally exactly what I need on a rough day.  In turn, I feel as though some relationships have fizzled over the past few years….and that’s ok too.  Life changes for everyone.  Sometimes life gives you lemons and you make lemonade…..sometimes you add some vodka to that shit!  I recently read a book, “The Hot Young Widows Club”, and one of the chapters ends with “not every relationship will survive this death.”  It resonated with me, like that’s ok.  I always have said that certain things happen for a reason.   I try to find some sort of silver lining.  Life isn’t perfect, and I sure as shit am not either.  Life events change people….some for the better, some for the worse, and sometimes its shaken up and there is a mix of emotions.  Sometimes you need to wade through the negative nellies like “hold my beer, let me show you how it’s done” and you channel the negative into a positive situation.    And sometimes you bite it in front of a fancy restaurant and skin your knee like a 4 year old.  (yes, that really happened…..gracefully, I’m told). It happens…. life happens….its a natural occurrence for people to phase in and out of your life.  It’s refreshing to spend time with newer friends, but it doesn’t mean that the older friends won’t always have a place when you need each other either.  All in all, in the year of Stacie, I have Just. Kept. Livin the best way I know how.

 

I had almost forgotten about this thing, until I remembered this is the year of Stacie…… and just re-read EVERY post!   This is what happens when there are storms in Teterboro.   It’s amazing how much has happened over the last few years.  Its almost hard for me to remember all of those Chicago trips.  Its funny how THIS life seems normal now. Who knew?!  Who knew I could be so used to only worrying about myself!  Hence, the year of Stacie!  =)

This year has already been full of concerts and baseball games, and time spent with good friends.  I’m making myself crazy(uh, crazier) just thinking about what September and October will be, and how much money we can actually raise for the Cancer Center.  Planning will soon be in full swing (golf outing, get it?).  I get excited with every registration and hole sponsor, and am quickly running out of space in the basement for purses!  I’m counting down the days to a long overdue staycation, and lake day shenanigans with the BFB’s, if we ever get past monsoon season!

In reading over my previous posts, it reminds me of how strong life has made me, and how much I have continued to grow.  I am more than ready to share my story, and to help others along the way.  I may have neglected this blog, but I’m not ready to let it go! I need it as a reminder to just keep going, no matter what is thrown at me.  I’m looking forward to more concerts, tattoos, cookouts, and perhaps getting a trip in at some point.  I’m ready to JKL, and keep livin my best life!!

 

 

Wow…another year has flown by, yet again!  I feel as though 2019 shall be the year of Stacie!  I mean, I started the year with a nasty cold and my first trip to WalMart in probably about 3 years, so basically, I can only go up from here, right??  Reflecting on 2018, it was very much a building year for me. I spent 2017 trying to wade through the shit show, and 2018 finally settling into this “new normal”.

This last year has continually reminded me how blessed I am to have amazing people in my life.  The friends that you may not see often, but when you do, you pick up right where you left off.  The friends who you do see often, and value every visit just the same.   New friendships have been built, and seem as though there is no way you haven’t had them in your life for years.  Most importantly, I feel blessed to have some sweet kiddos in my life.  I feel so important when I get in the car or walk in the house and kids are shouting at me to get my attention first!  Watching them grow is by far one of my most favorite things to do this last year…..even if it means watching baseball games in the sweltering heat, or Fall ball in what felt like sub-zero temperatures!

I muddled through another tough year at work, but have hopes that the workload will balance out after our work family starts a new year without a crazy knowledgeable and vastly loved coworker.  Starting 2019 with new work projects on the horizon, in addition to wrapping up year end reporting, and annual training, should keep me on my toes in my work life.  Having a new adventure with the Totes for Ta-Ta’s event should also be just enough to satisfy my need to give back to the Cancer Center, as well as give me something to challenge my mind.  Perhaps more purpose all the way around.

On a more personal, healing matter, I had been experimenting with not wearing my wedding rings.  While my rings were my “pie in the sky” wedding set, I have always taken them off to shower, wash dishes, to sleep, or even just when I get home for the day.  There have been several times where people have noticed and asked about it when I didn’t have them on.  I recently read a book, “Widows Wear Stilettos,” and  one of the topics addressed this exact situation.  After reading the book, I don’t think I have worn my rings for 3 or maybe 4 weeks.   WHAT does this mean?!?!?!    I’m not sure really.   I don’t think there is any hidden or secret message.  Sure, a wedding ring is certainly a symbol, but I know men who are married don’t wear a wedding ring at all, and no-one blinks an eye!  Reading the book nearly two years after John’s passing reiterated much of my thoughts and actions over the last two years.  It made me realize that it doesn’t matter if someone else notices that left hand with bling or no bling.  Not wearing the rings doesn’t mean that I love or miss John any less.  I have his ring soldered on my arm!  No, its not because I am dating or searching for someone, but if I am, so be it.  I mean, I don’t want to be alone forever, but dating still seems terrible!  Perhaps it is just part of the healing process, which no one can explain.  I know that at any time I can put that puppy right back on if I need to (even if it is a bit tight).

I am very excited to see what 2019 brings for me on all levels.  I am a different person than I was a year ago.  I am (kinda) ready to push myself out of my comfort zone, something that is VERY difficult for me!  Bring it 2019, lets do this!

 

“you never know what’s gonna happen, you make your plans and you hear God laughing”.

I can always circle it back to song lyrics!  So, I did a thing.  For the last 15 years I have slept on the same side of the bed.   The bed John and I bought after roughly six months of dating….before he officially changed his address at work to my address.  (is that normal??).  I have slept in that bed by myself for over two years now.  Actually, more like three, considering all the time we were away from home after transplant.  Anyway, for the entire 2-3 years, I have continued to sleep on the same side of the bed.   About 2 months ago, I got this wild idea that I should probably utilize the rest of the bed, and tried to sleep in the middle of the bed.   It was no bueno.   I couldn’t sleep.  I don’t know if I wasn’t tired, wasn’t comfortable, or if it was just in my head.  I gave it a few days, and slowly inched over to the middle of the bed, which I’m happy to say, I have slept in the middle of the bed ever since!   If only all of life was that easy!!

Life sure has continued to throw wrenches my direction.  I’m kinda over it. Just days after my last posting, I lost my work BFF.  Yeah, we had different work ethics, but we made fun of each other at every possible moment.  We were constantly joking and trying to irritate each other, but we also talked each other off the ledge more times than I can count.   I’m not gonna lie, he knew more about my life than was probably healthy for a male/female work relationship.  My boss referred to the desk he sat at, just yesterday, as “Rob’s desk” and I’m not really ok with that.  We always joked that we had wished we had our own offices, but when one of us was out of the office, we would end up texting each other.  The days are longer without someone to chat with throughout the day, and I miss his knowledge and crazy quick wit.

Just before Rob passed, I had begun contemplating making a career move.   I love a lot about my job, but if you have ever heard me talk about traveling, you know I have no real love for aviation.  It’s nothing I ever mentioned to Rob, but I’m sure he would have had an opinion.  (Yes, its ok, my supervisors know I have been thinking about a change, so I’m not just airing it out there all willy nilly!). I’m not sure where a job search will take me, but I think it would be amazing to utilize the twists and turns of the last 6 years to my advantage.   I feel like I have a very unique skillset that I don’t wish on my worst enemy.  I CAN tell you that I have reached out to the Cancer Center to look for volunteer opportunities.  I have wanted to give back for a long time, but, you know, life.

I recently had an opportunity to look at a friends house that she is selling.  Am I even ready to move?  Mentally?  Physically?  Financially?   OY!  It was a good way to get me thinking about the possibility of moving….I mean, I have been in this “starter” house for FIFTEEN YEARS!  Ain’t nothing wrong with this doll house….but I have always wanted something a bit more spacious with a better floor plan.  I’m just not sure if now is the right time. But is any time the right time?   I know I will certainly need to assess my budgeting skills before I start to seriously think about making a change like that.  Maybe just get rid of my Amazon account.   Ha!  JK.    That’s not happening.  Just taking a gander made me think of my wish list for a new home, which by the way, needs to be a LOVE!  I know this place isn’t a dream home, for anyone.  I do know, that I got engaged in this house, about 10 feet from my current location.  We lived here when we got married, and we spent an abnormal amount of time in the basement watching tv and movies when John was sick.  I know that John wouldn’t want me to live here forever.   He HATED this house!

I feel like perhaps I have found myself in a slump…..or maybe that’s just the mattress.  The last few weeks have given me a lot to think about.  I’m a person who hates change, unless I’m in control of said change!  Maybe that’s the thing… maybe I don’t like life just throwing these changes at me.  I’m sure this is all part of some master plan and it will all work out in the end, but one change at a time, yo.

It ain’t!  I spent some time cleaning out my bathroom cabinets this afternoon.   I took a pic on my phone… but apparently it didn’t save…b/c that’s my life.  What I found brought me back to my care taking days.  The plethora of supplies that were pushed to the back of the cabinet.  Gloves, masks, ExLax (did I mention I’m baking brownies), Imodium, Fiber pills (because you never know which way things will go), Eucerin, among others.   It reminded me that I still had this picture on my phone from way back when.   I can still remember the days where I had all those pills and doses basically memorized.  Pill boxes were filled once a week, usually on the days that we had clinic visit, just in case something changed.   I promise its a pain in the ass to fish out the one tiny little Tacro (that autocorrected to taco) pill out of that box!  I other news, there’s definitely a “Wednesday” case somewhere around here, or perhaps someone got a bonus when they got one of our old cars.

Just managing medications was a job in itself.  My first trip to Walgreens, on the day that John started treatment, was a doozy!  I had to pick up only one prescription, prednisone.  Yep, the first treatment had a prednisone taper after every infusion.  “take on day 3, 4 5” or something like that.  They also gave a list of over the counter medications, which made me feel like a lunatic.  Tylenol, because you shouldn’t take ibuprofen with chemo.  Imodium AND ExLax, because you seriously never know which way things will go.  Just a few things to have on hand, just in case.

I still remember the time when I went to Walgreens to pick up Lasix, since John’s legs may have been bigger than the tree trunk in my front yard.   They wanted to give me Potassium pills.  (If you have never had these, they are legit horse pills!). I thought, hmmmm, that doesn’t seem right, so I called the clinic.   Our fave nurse shouts, “DO NOT GET THAT!”  “I swear I’m not trying to kill Johnny!”  Followed by ” Thank God you pay attention!”   They had talked about monitoring his potassium while he was on Lasix…not prescribing it.  Crazy enough, when he was admitted to the hospital the final time, his potassium was super high because the yahoos at the nursing home didn’t know enough to stop the potassium when he stopped the Lasix.  Don’t worry,  they had to do every possible thing to get it to come down….um, bring on the ExLax.

He was getting pretty shaky at one point, and I knew he needed his Tacro level checked.   UofC had been keeping him under 8.   It was TWENTY TWO!  Tacro was basically a drug to keep his body from rejecting the transplanted cells.  Of course the nursing home wouldn’t take my word that he needed to adjust his dose.   I called Dr B direct on the bat phone.   He was on vacation, but put a call into Dr G’s cell, and then called me back to give the phone to the nurse to discontinue the med.  I may or may not have just had him ditch the pill in the meantime…..

I really don’t know how he has been gone for a year and a half already.  It seems like just yesterday that I was managing all these medications.  While I’m glad I don’t have to keep track of all of that anymore, I would do it again in a heartbeat!  Medications was just a small part of the journey, an important part, but just one piece of the puzzle.  (NOT the superhero puzzle… that one almost broke us!)

 

There’s nothing quite like a Saturday with no plans.   So here I am on this gloomy day, unshowered in the middle of the afternoon, laundry in the wash with a Starbucks in hand, bingeing on Food Network, TLC, and HGTV.  I really only blog these days when something really speaks to me.  Today, after 19 days in the hospital, my friend Jen’s husband Aaron got to go home after suffering a hemorrhagic stroke.  You guys…..he’s my age!

I have obviously had a lot of experience with cancer in my life, but cancer isn’t the only terrible thing that can be detected by a doctors visit.  Only you can know your body, and know what is normal for you.  OR maybe know your spouse, or kids.  It turns out, Aaron has a blood pressure issue…. but never when to the doctor.  Now he will certainly have lots of followup doctor visits, a boatload of therapy, and a new diet that includes a very limited amount of sodium.   The good news?   He was very lucky that Jen was home at the time of the stroke, and that she is a school teacher, so she is off work for the summer to help him rehab.   Oh, and they have been cleared to take their family vacation, and surely deserve a week at the lake after the crazy of the last few weeks.

While Aaron and Jen’s story prompted me to blog this weekend, they are not the only example of what this thing is about.  There are many lessons that I have learned in a relatively crappy way over the last 5 years.  The top lesson being that no matter what life throws at me, I am BLESSED.  I have had my heart ripped out and my world turned upside down.  Through all the trauma, I remember that the friendships I have built will last a lifetime.  I have been brought closer to friends from my life prior to John, closer to friends who were with me throughout John’s sickness, and made new friends after his passing.  The second lesson….LISTEN TO YOUR BODY!

If you “don’t go to the doctor,”consider going for a simple checkup.  A little blood work, and exam, about one hour of your life, can literally save your life.  Maybe you have to take a pill to control blood pressure, maybe you have to take a pill to control cholesterol, maybe you are perfectly healthy!

A simple nagging cough is how we found John’s cancer.  An intestinal parasite is how my brother found his tumor in his lung. Cathy had a headache, was sick to her stomach, and not acting like herself…..then spent two months in the hospital.  A lump found in the shower, a baseline mammogram, an annual mammogram.  I know FIVE women who are close to my age who have been diagnosed with Breast Cancer.  Two of these women have lost their battle, one is actively taking chemo, one is on maintenance medication, and one is a few years cancer free.

My point is this.   Don’t just get complacent.  Get your annual preventative testing, see a doctor on occasion, if something isn’t normal, get it checked.  Hell, my previous doctor ran a bunch of tests before giving me anxiety medicine.  (And thank God he did! Whew!).  Only you can take care of yourself, and JKL!