Wednesday, May 23, 2012

Update on Tara...

First of all, let me say how much we have all relished every day of the past 3 months that Tara has been feeling good.  I still wasn't used to her feeling good yet; but we were all starting to BREATHE some.  A special treat for me was Mother's Day.  I came home from church to see Tara in the kitchen cooking up a storm with Josh.  (their church is earlier than ours)  She planned the menu, bought the groceries, and enlisted help from Nate & Dad & Josh as cooks and kitchen cleaning help.  She looked great; felt pretty good; and it was very different to have Tara waiting on me in the kitchen!  I loved that whole day - enjoyed having my children and grandchildren around me; although we missed Travis!  Rachel and Nate came over later that night and everyone was so good to me.  Speaking of which; I have a new granddaughter - I will post a picture - she is the cutest thing EVER!  I show her pictures off regularly!  When I hold her in my arms, it just feels like I'm holding a MIRACLE.  She is completely perfect and I'm so glad Ryan & Stephanie have her in their family!  It's so awesome to have Rachel and her husband, Nate, here for the summer as well - that is pure happiness also!  So, before the most current news; we have to remember how much we enjoyed the "sunshine."

Friday I looked at Tara's head as she was getting a haircut and my heart went to my toes; I saw the dreaded scabby looking infection on the top of her head again.  I made an appointment to see Dr. Smith on Tuesday.  Meanwhile, if anyone ever asked me "how is Tara" between Friday and Sunday; I was likely to bust into tears.  (which I did often - just had to get it out)  The thought of surgery again, IV antibiotics, sickness, pain, was just more than I could stand.  I thought to myself as I had thought hundreds of times before "why can't I just have this one surgery instead of Tara?"  I am still in shock as to how her head can possibly be infected when it looked so healed before!!  I just don't get it.  So, I tried to pick myself up and move on; and by Sunday I had pretty much moved from sadness and frustration to acceptance and faith.  Can't lose the faith - where would I be without that?

Tara had not been feeling herself either; strange headaches, dizziness, general yuckiness in the stomach, etc, which to me were all signs of this infection.  So, Tuesday, we marched into Dr. Smith again (whom we had not seen for several months) and showed him Tara's head.  After she described her headaches and symptoms, he said something that frightened Tara about "underlying diagnosis" as the reason we need the scan - well, combine that with her headaches and him not wanting to operate until after the scan; and that was all we needed to be sufficiently scared.  So, the past day and a half, we have been trying very hard to just breathe and have faith.  We had dinner Tuesday night and Tara received a priesthood blessing, which was really great.  It seemed to help calm us all and I think Tara felt more at peace after that.

Today Tara and I marched into the MRI and doctor's appointments; accompanied after the MRI by Scott, Josh, Josh's mom (they all got there in time for the reading of the MRI).  We were all just trying to hold ourselves together until we heard the results.  Tara and I talked about how we try to "celebrate" everything and make the most of it that we can. Today we enjoyed each other by going to lunch at Zupa's first - a new place we had heard about.  We reflected on how nice it it that Tara HAS an appetite and enjoys food (something that has been rare in the past 2 years).  Next MRI we are going to leave even earlier and do Last Chance AND Zupa's!  Anyway, remember how I mentioned in a earlier post about how I love that Tara is feeling better, but I don't see her as much?  Well, this week we were back together, and although I love seeing her more; I don't love the reason I see her more.  It felt all too familiar to drive to St. Joe's 2 days in a row.  The car almost drives itself there.  Last year I figured I drove (had to figure for medical miles for taxes) over 3000 miles to St. Joe's and back.  Tara was amazed and thought about what kind of an amazing trip we could have taken for those miles!

Anyway, we had tried to prepare ourselves for the worst news; while still hoping for the best.  We all piled in Dr. Shapiro's small MRI room; and looked at the scan together.  Dr. Shapiro doesn't have the greatest bedside manner; so I was concerned; but then, when it's bad news; there may be no way to gloss over it.  Terri Thomas made it there in time; which is always helpful to have her reassuring presence there.  I think she had Shapiro look at the scan first before seeing us - which he doesn't usually do.  Anyway, he said the scan looked fine as far as there is nothing in the brain going on in the tumor area.  We all took a huge breath and about cried with relief.  There is some "enhancements" in the area of the incision at the top of her head; which could be fluid (which could explain the headaches).  So, we once again put everything into perspective.  We were so relieved there was no tumor re-growth that once again, we were grateful it was only infection we have to fight.  Last weekend I was pretty down about that infection; but now I think I will get through it (listen to me talk, you would think it was me suffering through this!!)  Fluid isn't life endangering.  Infection is serious and a problem, but one we can hopefully deal with.  Tara is amazing - she braces herself for surgery and says she would rather have surgery than not know what is going on inside her brain. She likes knowing exactly what is going on, exactly which infection to fight, etc.  Josh & I aren't so quick to be happy about surgery.  Dr. Smith left the door open a little - gave us a little hope that the body could heal without surgery.  He is going to have weekly Tuesday visits with Tara again to watch that head for awhile. He thinks he will have to do something at some point; but for now, we are going AWAY as a family this weekend; and we are not going to worry.  So, once again, I am requesting your faith and prayers in Tara's behalf.  Please pray that this infection will be healed for good and that her body can fight this.  It's always a bonus to pray that the tumor will continue to be rebuked as well:)

Meanwhile, we are back to the "no water" for this summer; and Tara was just getting comfortable with the idea of possibly swimming.  Such is life - there are much worse things that not swimming for awhile longer.  That is another thing this journey teaches me - don't sweat the small stuff - it's just not worth the emotional energy.  I feel drained today; but relieved.  (sort of relieved, still concerned about that infection).  I'm going to go away to the mountains and enjoy my family and not think about brain tumors for 4 whole days.  (Scott said tonight it never leaves him, and that's somewhat true for all of us - it's always there in our mind somewhere..)

We all so appreciate your faith and prayers and thank you for your constant love and support.  Hopefully Tara will blog soon - she hasn't had the internet at her apartment for awhile; but it is restored now; so you should hear from her.  We had a celebration of life on May 14 that she should tell you about.  Rachel made a DVD of the past 2 years, and we talked about our feelings about Tara and the journey we've been through.  The DVD had us all crying - looking at those pictures of radiation, surgeries, no hair, etc - brought alot of feelings back.  How many bald beautiful women would put Nerf gun arrows on their head?? (you know, the sticky suction cup ones) That just goes to show you Tara's attitude through this whole ordeal.  Scott bought her some really beautiful flowers and we put "come what may and love it" on them.  Tara said the night meant alot to her. She and I never forget May 14, we never will. May rolls around and the feelings start rushing back to me. I'll never forget that day, holding my daughter in EVDI, crying and shaking with shock.  As Tara said today at lunch, "I'm just grateful to be alive!"  We're grateful she's alive 2 years later and still making us smile.

Hug those you love today - life changes quickly and you never know what tomorrow brings.

3 comments:

kelsey bang said...

i love how you said dont sweat the small stuff. great advice! so glad you had a lovely mothers day and overall Tara is doing great! she is an amazing lady! and you are an amazing mom :)

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