Stray Thoughts Sunday

I’m back this Sunday (how is it already Sunday?!?  I only have exactly one week of Spring Break left now!!!) for some more of my Stray Thoughts.  Hope you enjoy them.  Please share your Stray Thoughts in the comments or by linking to a post of your own!

Stray Thought #1 – Loss is hard.  

This week was my mom’s birthday week.  For those of you who have not followed this blog, I lost my mom about a year and a half ago.  She was very sick for a very long time, so that made her passing a bit easier as it was a relief of sorts.  But, I still think about calling her multiple times a day.  I still think about all the things she would have loved to hear about with my daughter and how much she would have enjoyed the school play this year.  No matter how much of a relief, loss is hard.  Most of the time, I think she sees it all from her place up above and is laughing and enjoying it more from there, free from the pain and suffering and anxiety she had here on Earth.  But, it is still hard to be without that contact. Miss you and love you Mama!

Stray Thought #2 – Biopsies are hard, too.  

This week is my DD’s annual heart biopsy to check for any problems with her transplanted heart.  She used to have these on an even more frequent basis, but now (thankfully) it is only once a year.  She stresses out about it quite a bit. She doesn’t really say anything, but she gets moody and cries easily about things that would otherwise not make her cry.  She seems tired, but really she is anxious.  She doesn’t know how to tell the difference at this point.  She had a bit of a meltdown last night before bed and told me she didn’t want to do the biopsy.  It made me cry, because I would give anything to be able to say, “you know what, let’s just not do it then!”  I’m not one to let her quit things, but this thing, I would be happy to let her quit.

It isn’t horrible.  It is same-day.  We arrive early in the morning, check in, get all the vitals done, go to the pre-op, she gets Versed (which has been a source of problems and as ironically as it seems, is the anxiety prevention med that gives her as much anxiety as the biopsy), we roll down a loooooooooong hallway as the Versed takes effect and we leave her at the door of the OR.  We go and eat and hang out, hoping the whole time that everything is looking good and going well, but not really knowing.  About an hour later, we get called back to the family waiting room, talk to the doctor, and then a short time later, get called into the post-op area to see her and deal with her as she wakes up, scared and angry, from the anesthesia.  Once she has woken up and has received an EKG and Echocardiogram and seems to be doing okay, we get sent up to the Short-stay Unit, where we do our best to keep her from moving around too much (which is hard most of the time…she has to lay flat and hates it) and she gets to eat a little something.  We then get released about eight or nine hours after we arrived and we drive the four hours (often in horrible Bay Area traffic) back home.

It is exhausting, stressful and annoying.  We are heading down on Tuesday to stay the night by Half Moon Bay and go tide pooling and eat good food and try to enjoy ourselves despite knowing what is coming the next day.  It is our thing we do.  Distraction.  My in-laws are coming up from the Central Valley to do the whole thing with us (which is amazingly kind of them, but is also stressful in some ways – I feel somewhat responsible for making sure they don’t have a miserable time despite it being a miserable time).

We will get through it.  All of us.  We always do.  But, I must admit that it is not something I’m looking forward to.  Not at all.

Stray thought #3 – I’m thinking of writing a book.

There, I said it out loud.  Well, wrote it out loud, in black and white.  I haven’t got it all figured out yet, but it is the first time I feel like I have something I could realistic start AND finish.  I’m not sure about doing it all quickly, but I am excited at the prospect.  We shall see.

Stray thought #4 – Blogs, blogs and more blogs.

There are so many amazing blogs out there.  I’m a little overwhelmed by all of them.  I will share some of my favorites in the coming weeks!  But, I’m trying to make this one a little better and a lot more successful this “year”.  By which I mean, this month until March of next year (because I didn’t really get started on this seriously until this month).

My last Stray Thought this week – Spring Break is awesome.

I am very excited to NOT have to go teach tomorrow.  I am very excited to be able to read, clean my house, organize my thoughts, and not feel like I’m running around like a chicken with my head cut off to accomplish all the crazy amount of things I have to accomplish each and every week.

So…what about you?  What are your stray thoughts this Sunday?!?

Five Minute Friday – There was no control

Well, the first week of the Spring 2017 semester is over and done.  I am in St. Louis at a Speech and Debate tournament and I’m up way too late.  But, I decided I would at least get my Five Minute Friday post in this week.  If you aren’t already participating in Five Minute Friday, you should go give it a link.  This week they are focusing on participants finding those who are new to Five Minute Friday, so you’ll get some visitors and commenters as a newbie!

The prompt this week is Control:

Control is something I gave up in my life long ago.  Actually, I really gave it up almost exactly eight years ago.  Almost eight years ago, I went in for a regular checkup during my pregnancy and ended up in the hospital.  I was there for only a few hours before I was on a helicopter flying to a bigger hospital with a NICU.  In all honesty, I don’t remember a ton about it.  I don’t feel like I totally knew what was happening.  But, I arrived in Sacramento on a helicopter, was placed in a room and hooked up to monitors.  Originally, we thought I would be spending the rest of my pregnancy there (I was only 32.5 weeks along at this point, so we were looking at another six weeks or so).  But, the next day, it was decided that the baby had to come that day.  An emergency C-section was scheduled for that evening.  So, I went from eight weeks away to six weeks away to less than 24 hours away from having a baby.  There was no control.

Once Bean came along, she seemed to do well considering how early she was.  She was tiny.  She had to be in an incubator, like the eggs we used to have in our classrooms when I was in elementary school.  I couldn’t even go see her for the first 24-36 hours because I was still unstable with severely elevated blood pressure.  I was brought pictures and told about her, but I couldn’t actually go see her in the NICU.  It was all so surreal.  There was no control.

We brought her home three long weeks later.  She was still tiny.  We had to get a special car seat, one that held a baby smaller than five pounds.  We didn’t have any baby stuff yet, because we had six weeks and a baby shower still to come.  Our friends got us a bassinet so she would have somewhere to sleep.  We had vitamins and tiny bottles and tiny clothes and a bassinet.  We went to the pediatrician and the lactation counselor.  We thought we had made it through the worst.  But, there was no control.

After three weeks at home, we ended up in the hospital with a diagnosis of RSV.  I moved into a hospital room at our hometown hospital in the pediatric wing.  Bean moved into another incubator.  They would come in and give her breathing treatments every so many hours.  She wasn’t getting better.  My husband would come in during the day to let me go home and shower.  I would come back to the same.  Finally, on the fourth night with no improvement, a nurse seemed to be annoyed and told me that we should not still be there.  I didn’t know what she meant.  But, the next morning, we got news that there would be another helicopter ride.  This time, Bean would fly by herself and we would meet her back in Sacramento at a different hospital and she would be in the Pediatric ICU.  We went home to pack.  There was no control.

We received a call while driving the hour and a half to the hospital.  Bean had arrived.  They had to intubate her.  She had stopped breathing for a time.  A reaction to the Kedamine most likely.  But, they had her stabilized.  They wanted to know if anyone had talked to us about her heart.  No one had.  The doctor told me it was five times the size that it should be and was crushing her lung.  There was no control.

We spent that week in the PICU.  They had her on heart medications and an intubator and a feeding tube and so much more.  She was still tiny.  She was covered in tubes.  She looked like some sort of rag doll.  It was surreal again. We watched TV.  Family came and visited.  We slept in recliners.  We sometimes went to my sister’s to sleep.  Cardiologists came and visited.  Finally, she was stable enough for them to do a heart catheterization.  It was scheduled for Friday morning.  They would know then if it was a structural problem causing the heart size.  The news came back that it was not structural.  The doctor told us he thought she needed more than they could do and suggested Lucile Packard at Stanford.  We agreed.  Another helicopter flight was scheduled.  Then cancelled because the size of the helicopter from Stanford could not land on the roof of the hospital we were in and the drive to and from the nearest place would be wasted time.  So, they would send an ambulance instead.  There was no control.

We drove down and slept a bit before going to see her at Lucile Packard.  We walked in to a group of doctors and nurses and pain specialists and fellows – about 11 people standing around her room talking about her condition.  It was both terrifying and humbling.  We were told what they were going to do to figure out what treatment would be best.  We were told she was very sick.  There was no control.

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It has been much longer than five minutes, but once I got on a roll with that, I had to keep going.  I feel like I could go on like that for pages and pages and pages.  So much has happened and continues to happen that is out of my control.  And despite the horror of the news and the frustration at the situation and the feelings of victimhood (why us?  why her?), we have made it through.  She is not just surviving but thriving.  I am here.  I am making it work.  But, when I start to retell the story, I realize I need to cut myself some slack.

It hasn’t just been my daughter’s story, but my dad’s quick degradation into Alzheimer’s and then long suffering before death.  My mom’s cancer and loneliness and depression and then her death.  My own biopsy a few months ago (that came back negative).  If there is one thing I know, it is that I have no control.  The doctors have some control, but even they don’t have total control.  They don’t always have the answer.  At some point, we have to realize that we have a very small sphere of control and even that is not ours.  As hard as it may be to admit it, we are not able to control our fate or the fate of those around us.

But, we do have the ability to live our lives with love.  We do control what we choose to put out into the world.  Love and light and understanding.  So, that is what I choose to focus on at this point.  There is no control over what happens TO us, but we can control but we do TO and FOR others.

 

Five Minute Friday #1, 2017 – Connect

I am joining in for the first Five Minute Friday of 2017!  I’m excited to get started writing more consistently this year (and hopefully building my blog into something “more” as well) and Five Minute Friday is always a great exercise with a wonderful community along for the ride.  This week’s prompt is “Connect”.

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Here goes:

Well.  I am finding it somewhat difficult to connect to the prompt connect.  I’m just not sure where to go with it.  A lot comes to mind.  Connecting with others.  Making connections in my life.  Connecting the dots.  But, none of it is really driving me to write about it.  So, I guess I’ll write about how sometimes, it is difficult to connect with other people and things and that it is okay for that to be the case.  We would not appreciate the times when connections were strong and meaningful if those types of connections were constant and consistent.

I often have problems making close friends for example.  I just don’t connect with others as much as I would like.  And it isn’t for lack of trying.  But, when I do find someone I connect with, I feel it strongly and that connection is there whether we are spending a lot of time together or just a few minutes here and there.  I feel the same about entertainment and activities.  I don’t often feel strong connections with TV shows or movies or exercise programs.  Others seem to find something and really connect with it and loooooove it.  But, I don’t as often.  I connect with things from my past more than anything else.  Perhaps that is where I have my strongest connections – to my past.


That’s it.  I feel that this week was tough.  I’m not sure why.  It has been a long and somewhat stressful day (although I didn’t do much).  My DD is not feeling well.  And although she isn’t feeling horrible either, she did start running a fever tonight and with her past, I seem to be in a bit of a PTSD anxiety attack.  It isn’t horrible either.  I’m not panicked or anything, but I do feel a bit of trepidation about planning and what is going to happen.  In all reality, she will probably get better in a couple of days, without any complications.  We went to the pediatrician today and her lungs sounded good, she had nothing in her ears, her throat didn’t look too bad and she was negative for strep.  So, all good signs, but then she spikes a fever.  It just makes me wonder what is going on in that little body of hers.  And, in reality, it is probably nothing but a normal 7 year old virus that is running its course.  But, in a heart transplant recipient, it doesn’t ever seem like a virus or illness is normal or can just simply run its course without some concern.

So, I’m watching what I connect with – Poirot – on Netflix.  I’m waiting for the coming “Storm of the Decade” here in California, which should be hitting any time now.  I’m intermittently cleaning and organizing and purging.  I’m looking forward to a weekend of quiet and catching up and preparing for Spring 2017.  My DD is supposed to go back to school on Monday.  We will see how she is feeling.  But, I don’t have to worry because I’m not working next week!  We are scheduled to go to heart clinic on Tuesday, but with the illness/fever happening this weekend and the storm of the decade hitting, I think we will be rescheduling that.  So, that sets us up for a relatively quiet week ahead as well.  I can connect with that…

Five Minute Friday -Alive

I am joining the Five Minute Friday crew over at Kate Montaung’s blog Heading Home again this week.  I hope you’ll consider joining them as well.  It is a wonderful group of supportive writers sharing their perspective on a prompt each week.

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This week’s prompt is “Alive” – here goes:

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That is my daughter.  The picture is from July 3, 2009, four days before her transplant.  She had not opened her eyes or been awake for days, maybe weeks before that.  She had been on a paralytic in order to keep her from fighting the ventilator and all the other lines she had going into her little, tiny body.  She had just been moved from the PICU to the CVICU because the PICU doctor had basically given up on keeping her stable after days of changing medication levels, plunging blood pressures to elevated blood pressures, bad labs, etc.  The CVICU is typically reserved for those who have already had heart surgery, but they moved her there, I think believing that if she didn’t get a new heart within a few days, she would need to have a Berlin Heart.  Either way, she would be in the CVICU soon enough anyways.  She was probably as close to death as a baby can be without passing away.  It was terrifying and exhausting and depressing.  But, she held on.  Day after day.  Through what had to be painful and frightening situations.  I must admit that I sometimes wondered if we were doing the right thing.  Putting her through all that. But I had to believe that keeping her alive was better than the alternative.

Bean post transplant one month

This photo was taken one month after her transplant.  The difference is pretty amazing.  In four weeks she was off the ventilator, smiling, had lost the puffiness that had been there for months before.  She was taking formula from a bottle.  She held fingers and loved to watch a mobile over her head.  She was ALIVE – not just at the basic level she had been before, but at the WHOLE level.  She was aware, awake and active.

I am now confident that we did the right thing putting her through everything.  She has thrived in the past seven years.  We have had our medical bumps and rough spots, but overall we’ve had it good.  We’ve had great times and we have wonderful memories and wonderful friends and being alive is good.  It is important to remind ourselves of that when things get rough.  Babies even know it. But sometimes life’s hard hits can make us forget that knowledge.  In this season of new life, remember that being alive is a gift.  A gift to us and a gift to others.

 

Five Minute Friday – Surprise

Back again to join Five Minute Friday this week.  Each week I can’t decide if it feels like it has been forever since the last FMF or if it feels like I just wrote it yesterday.  This is another one of those weeks.  But, such is life.  This week’s prompt is “surprise!”

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Surprise!  Usually it is something we think of as enjoyable.  But, there are also those unwelcome surprises.  And that is what we got this week.  We went to the hospital as planned, after two enjoyable days in Monterey, expecting a pre-op appointment for my DD’s pacemaker placement.  When we arrived, the woman at the desk asked if I had received the message the day before and when I checked my phone, there it was.  A voicemail from our transplant doctor saying there had been a change in plans and to call him.  I had not received it because we were at the aquarium, then my phone died from all the picture taking and I didn’t check my voicemail that evening.  So, there we were, at an appointment that no longer existed.  Surprise!

They called the transplant doctor and he came to speak with us.  It seems that my DD has only one access point for doing biopsies (I knew this before, but had forgotten) and the pacemaker team had not been told that. Surprise! So, their plan was to put the wires through the only access point she has for biopsies.  Not a great plan.  So, they cancelled the planned procedure and scheduled a different procedure.  This one will require an actual incision in her chest again. Surprise!  Hopefully, it will be done without actually opening her sternum again (requiring an unwiring and rewiring) and just going in under the sternum and running the wire between her rib bones.  They will look at that to make sure that is what they can do.  She will also have another incision where the battery pack will sit – a “pocket” in her abdomen.  Hopefully there will be no chest tube (again, not sure about that) and there will be a night in the CVICU and then to the step down floor for three to six days depending on how she does.  My usual reaction is to say to plan for three additional days because she can be a tough patient in recovery, or at least has been in the past.  Hopefully she has outgrown it, and I will get a good “surprise”.  But, we shall see.

So, that was our “surprise” this week – one night in the hospital has turned into four to seven and we’ve postponed it until the end of April to allow for our work schedules to be a little more forgiving.  But, not all surprises are good, but they are all…well, surprising!

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Join us for Five Minute Friday this week – link at the top!

 

Six Word Saturday – Spring “Break”

Spring Break spent fixing broken heart.

No…not THAT kind of broken heart.  My DD is having her pacemaker placed this week. Her sinus node is not working properly, so she is getting a pacemaker to make sure that if it decides to quit completely, there is something there to pick up the pieces and make the heart beat.  We will really only be in the hospital for one night, but we have to be there the day before for pre-op appointments, then the day of, then an overnight stay afterwards, then hopefully home with pain meds and a sling on her left arm.

I am not THAT concerned about the pacemaker placement.  It seems relatively routine (although I question how routine anything is when you’re working on a seven year old with a transplanted heart and a valve that isn’t working properly).  I am more concerned about what she is going to be like afterwards.  She is slightly unpredictable when it comes to these things.  Sometimes, she is a real trooper and an excellent patient.  Other times, she is pretty whiny and overly dramatic and holds on to things for a long time.  So, we’ll see which DD comes home from the hospital with us this time.

365 Days of Thankfulness – Day 25

Well, I’ve missed another few days.  Everday blogging is not an easy venture!  It seems like it would be easy, but it really isn’t.  I’m going to try to make this quick so I get it posted as every time I leave a post partially written, I never get back to it, so I now have a bunch of drafts…so, completion is the goal!

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Today, I am thankful for the news we got yesterday that, for now anyways, there are no heart surgeries in our future.  Although my DD’s tricuspid valve is still leaking and her heart is getting larger because of it, the pressures are good.  And since she doesn’t yet have any symptoms from her bradycardia issues, the team of doctors they brought together to discuss her case last week has decided that there is not a need currently for a pacemaker or a valve replacement.  So, for now, we are simply holding steady and hoping that she doesn’t have any symptoms for a long time to come.

I didn’t really know how heavily the thought of that was weighing on me until we got the news that they would NOT be doing any surgeries. I realized that I have been stressed for weeks about the possibility of another open heart surgery with the hospital stay and the long recovery and the emotional toll that it takes on us.  Obviously, it will come at some point in the future, but I just wasn’t quite ready for it now.  So, I am thankful for the delay.  I hope that her heart continues to work “good enough” for years, but I will begin to prepare myself for the alternative should it come sooner.

If We Were Having Coffee – Six Word Saturday Style

I’m going to combine a couple of things in today’s post.  Six Word Saturday AND If We Were Having Coffee!  It is a meme mashup of sorts.  Thanks to Nerd in the Brain for reminding me of “If We Were Having Coffee” which I’ve done a few times here on the blog – here and here specifically.  It is the perfect amount of randomness and provides an excuse for a totally conversational post!  So, first, let’s get the Six Words out of the way.

Enough already with medical issues, please!

Yeah…definitely captures my feelings right now.  Let’s have some coffee, because…well, this:

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If we were having coffee, I would apologize for my house looking like we are in the middle of a move for no good reason.  There are pictures from the walls sitting on the floor against the wall, waiting for me to decide where I should put them (I got some from my mom’s house and was going to switch things around, but now I’m not so sure and I’m feeling a little stuck).  There are piles on the dining room table.  A combo of stuff that came home from the hospital with us, stuff from my purse and stuff that was there before.

Yeah – the hospital.  We spent three days in the hospital with my DD this past week.  Totally unexpected.  We went in for a normal transplant check up and they noticed her heartbeat was slower than it normally is – only a slight difference, but they are thorough, to be sure.  So, they ran an EKG and there was a pretty significant bradycardia. So, they checked her in and then they decided to be sure there was no rejection, they needed to do a biopsy.  She used to have biopsies all. the. time.  First, every three months.  Then every six months.  And we stayed at every six months for a long time.  Then they bumped her tricuspid valve and it got knocked loose (it is a known issue in little ones doing catheterizations) and they had to repair it and the repair didn’t really work – just lessened it enough that when on lasix she would not fill up with fluid in her chest (which happened without us knowing once before the valve repair – again, unexpected stay, but that one was six days).  Then, to keep from having to risk bumping the repaired valve, we moved to annual biopsies.  But, now we’re back to six months to make sure there isn’t any significant damage to the coronary arteries and such while we figure out what is causing this electro-conducting problem.  The biopsy came back negative for rejection and everything looked the same that it did in May and the lower conductors in the heart seem to be working okay, so it is just her sinus node that is deciding to misfire…or not fire at all sometimes.  So, she is now wearing a heart monitor stuck to her chest for 14 days to track her heart beat over longer periods of time and we’ll see how she does.  They say she is not symptomatic but I think that maybe she has had some symptoms and we just didn’t know what to be looking for when it was happening.  So, now we know.  And we’ll see what shows up.  So, there’s that.  But at least we’re home.

I would tell you that my husband had to leave the next morning after we arrived at home because his mom had to have a double mastectomy and reconstructive surgery on Thursday while we were still in the hospital at Stanford.  Yeah…that’s right.  We were calling his dad in the hospital there while we were sitting in a hospital room here.  Sigh…  Good news was there was no sign of spread, so she will not need any chemo or radiation and hopefully this will be the end of it for life.  Bad news, she is not being a very patient patient and my husband and his dad are totally exhausted (this is day five in a hospital room for my husband…different room, same you know what).  He is going to stay down there to help out his dad this week, so  I’ll be dealing with Bean on my own.  I’m hoping that all goes well and there are no illnesses or heart issues or issues with his mom.   I’m hoping we have no more hospital stays for anyone in our family for a long, long time.

I would then drink some coffee and knock on wood and kiss my blarney stone or whatever you do for good luck and I would hope that you didn’t think I was some crazy woman with a Lifetime Movie Network life that is way to overwhelming.  Because honestly, that is probably what I would think if I heard my story.

I would ask you how you were doing and hope that your answer would be more Comedy Central than Lifetime Movie Network.  And you can include your response over at the Weekend Coffee Share at Part-Time Monster!

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Five Minute Friday – Same

I’m back after some time away (which will be explained in today’s Five Minute Friday post) and ready to spend five minutes writing.

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This week’s prompt is “same”…

Things are constantly changing, but they are also always staying the same in many ways.  This past few days we revisited a place where we have spent a lot of time and although we’ve changed dramatically, that place remains mostly the same.  That place is the Children’s Hospital where my daughter had her transplant.  We haven’t been there overnight for over three years, but a hospital room and hospital life is nothing if not the “same”.  I’m happy to say we are back home, but realistically looking forward to additional stays some time in the future.  We have friends who were there with us when my DD got her transplant and they are back for an entire YEAR – not IN the hospital, but staying at RMH and often in-patient for a few days at a time for cancer treatments.  I guess, in some ways, that sameness is a sense of comfort.  The fact that I knew where to go to get sheets and blankets and extra pillows and how to order food for my DD and where to go get food when the Children’s Hospital cafeteria was closed one night and to expect nurses in and out of the room throughout the night to do vitals is all a source of comfort where others would have a lot of anxiety.  So, in that way, the fact that the hospital is the same is comforting.  And I’m thankful for that.  But, it is also frustrating to get woke up every day at 6:30 a.m. to get weighed (really?  they can’t do a weight AFTER shift change in the morning?) and to always have the same menu to look at for food (but, at least it isn’t just some random meal dropped off to you that your kid will never eat, so that part is good).  Always the same beeping of the machines (although thankful we didn’t have to deal with any IV poles or IV fluids this time).  Always the same “hurry up and wait” for news or tests or results.

The hospital is much the same despite the new curtains in the rooms and the new little carts to tote kids around the hospital.  And for that, I am pretty thankful.  Being in the hospital is stressful enough, no need to figure out “new” things while dealing with that.

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That’s it.  Join us over at Kate Montaug for this week’s Five Minute write.  More on the hospital front in a coming blog post.

Six Word Saturday – Life Goes On

Life goes on…and on. Thankfully.

So, the week has continued since my mom’s death.  Nothing much has changed except for thinking I should call her when things happen, and me realizing that I can’t call her any longer.  She was always my go-to call when things happened or I found out information that I thought should be shared, etc.  Others in my extended family are having health issues too.  Three clogged arteries in one case, requiring stents to be placed this coming week.  A lump in a breast that needs removal, requiring a lumpectomy on Friday.  But, thankfully, neither of those are life threatening conditions and can be repaired.  I am also going to survive my “rash” just fine – it is Guttate Psoriasis, which arises after a strep infection.  So, I will have it for another three weeks or so, am using a topical steroid and will survive, albeit covered in blemishes for three weeks.

I am so thankful that modern medicine exists.  It is what kept my mom alive for the last 30 or so years (she was first diagnosed with breast cancer in 1987).  It is what allowed my DD to survive her heart problems (heart transplant and valve repair and the medicines she now takes).  It is what will fix the heart of my family member.  It is what will take care of the lump early to prevent further spread in my other family member.  Thankfully, we have access to medicine and practitioners who can do amazing things for our loved ones.  For that reason, and that reason only in some cases, life does go on and on.  And for that, I am thankful.