Update

 

So there is the latest.  It is about 4:00am on Monday morning.  I don't know the date, I could look but thats another story for another time.  

I have been at Lahey Hospital since Tuesday morning.  In one form or another.  I don't remember the last time I blogged so 1, 2 jump ahead if this is a repeat.  Tuesday Morning I woke up feeling crummy still.  Monday night Bryan had to help me lift my legs into bed.  I knew I was going for fluids in the morning so didn't bother to call the doctors.  
I was able to walk myself down the hallway at fluids but had a break down.  Dr. Piper was unable to see me so sent me to the Emergency Room.  It was decided that I needed to be admitted in order to get my pain under control.  I had been lying to Bryan and my  family about my pain level.  I had told them that it wasn't that bad.  I felt like I had the flu but manageable.  When it fact it was far was.  I couldn't handle it anymore.  The pain was unbearable on all levels.  

I was brought over to Lahey Burlington for a MRI (I have to have my Shunt Checked before and after ever MRI).  I was admitted prior to being brought over.  
The series of tests started on Tuesday night with X-Ray series, MRI, EKG, Echocardiogram, etc.  The only thing consistantly off is my pain level, magnesium, potassium, blood pressure.  The MRI showed small enhancement on what had shown up in December, but I have only had one treatment, so this came as no surprise.  After meeting with my pallative care doctor, it was decided that I needed a new pain management plan which would start on Wednesday afternoon.  Unfortunately, this pain management takes 5-7 days to get into your bodies system and start working.  So we need to control the pain before then.  There have been days I have done really well getting ahead of the pain and I feel good.  Then there are other days I haven't been able to get ahead of it.  And I am back to the 7-8, 6-7 pain scale.  I have not been able to get under a 5.  I am not able to get out of bed without a nurse in here to help.  I am on short term pain meds until the long term kicks in.  WE are adjusting my pain meds every day.  

I miss my boys terribly.  I miss my husband terribly.  By a retirement vacation this isn't what I had in mind.  I have cried, I sobbed, I have woke up in tears crying.  But I know that this is where I need to be in order to get myself healthy and stable again.  The fact of the matter is I was lying to myself about my pain level.  Everyone would leave for the day I would cry in pain and pull it together before my mom or sister came to check on me.  I wasn't okay.  I am scared of this disease.  This terrible disease scares me. 

There have been many good things that have come from this hospitalization.  On Monday I interviewrd with the H-W News about Lung Cancer and my time at the Hamilton Council on Aging.  I am working on getting a copy of it and as soon as I do will post a link. If anyone finds an online verision please sned it to me.  

I have met some of the most incredible nurses (aside from my Peabody girls-my three main nurses have been Ellie (she took care of me the first night when I was scared.  We took on the halls of Lahey at midnight looking for the x-ray room with only a snickers bar and a prayer we would find our way back!).  She has checked in on me when she has come in since.  She rubbed my back when I cried in the elevator, she sat in here while I cried at 2 in the morning.  Thank you Ellie for making the first night bareable.  Kayla & Gracie have been my night nurse/day nurse for the most part.  Again going beyond and beyond.  I wish I could give them the world to see if through their eyes.  How caring and how safe they had made this all feel.  We have laughed, cried, joked.  Last night Kayley came in with a little present present-my hair started falling out so I got a glove hand holder with a bonnet.  He is sitting on my night table, when I got up to get my meds I forgot she had been made and immediately started chuckling.  I love it.  They ask about my boys, my husband, they know what my mom and sisters are making.  They care.  And I appreciate it.  I don't know if they will ever read this but if they do-thank you!!! Thank you for taking the minute to make me feel important and cared for.  Thank you for your help!  If I had met you on the outside world you would have been part of my village!  You are part of my village!  

the boys came down and visited with me on Saturday.  I made sure that I was awake and present-i wasn't falling asleep this time.  Baelor was able to hug me and see that I was okay.  I don't think that I scared him.  He took my stich stuffy home with him.  Trent cried-I told him it was okay to be scared, it was okay to cry.  Let it out.  I assured him I would be okay.  Bryan and I talked a lot.  We had a good hour of uninterrupted conversation.  Something we haven't had in months.  Something I appreciate with him every time I get it.  I love you Bryan-Thank you, Thank you Thank you!  You and the boys are world!!! Thank you!!!!

This wasn't the weekend it was supposed to be.  My nephew is going back to school.  My sister drove up with all three boys to hang out with my boys.  We were supposed to have adventures and good times.  Instead, Emily and Bryan took the boys on Adventures, I visited with Joan and my mom. I laughed I Cried.  I am planning a get drunk on bottle of wine house at my mom's house with movies sleepover next time Joan is home.  One last sleepover with my mom and sisters.  My mil and sil have checked in on my every day!  They want to help and support us in any way possible.   

My friends have been texting me-it helps me get through the days.  Thank you!!  Thank you for the thinking of you texts.  If I don't text you back you aren't bothering me I am exhausted and will text back.  

We knew this day of long hospitalization would come but we didn't know when.  Here it is.   The pain meds make me a little loopy, there might have been some silliness said.    Some repeat questions, some repeat silliness.  My story hasn't ended!  I want that to be said a million times.  My story is not over yet!!! I am not done fighting.  I will continue to fight until I can't fight anymore.  There have been times this week I have felt like my fight is gone, but I get it back.  It is not over yet.  I am confident that today will be a good day.  I am confident that my time at Lahey is coming to an end soon.  

On an ending note-I know I have posted about my hair falling out this weekend.  But here it comes!  Ready or not.  No surprises next time you see me-or don't-I will have blended my back bald spot with an all over bald spot.  I am ready to rock this look!  I cried when my hair started coming out in clumps, but its my hair-its to be expected.  I'll cry again today when more falls out.  
Ok here comes the good meds to help me sleep a little more and get some more pain relief.  My blood pressure is up from the pain. 

Enjoy the read-comment, follow, share, get my story out there.  

Love to you all on a snowy Monday for you.