Friday, December 21, 2012

Scan update/Chuck Buckhannon/David Baker/could my life possibly be normal?


Well I think…I know it has been too long since I have been here! I am not sure why I took such a big break…I think part of me was enjoying never having to update people because I was always doing so well…there was no bad news to explain or complicated surgeries/meds we were dealing with. I was just loving being normal…well normal enough for me.

Today I write to report that my scan yesterday went well…tumor has not changed but we found a “ditzel” in there. A “ditzel” is not a medical term it is just what Shapiro used to tell us that there is something in there that is a little odd. He said it is a vein, scar tissue, or tumor but he is doubtful it is tumor because tumors grow in a circular shape usually and this is oblong… So we are not too worried and we are just going to watch it…what else can you do? I count it as a good report! J

Yesterday when I walked into the MRI place who did I see sitting waiting for their MRI?? My neighbor! Four doors down lives my neighbor/home teacher and he was scheduled for an 11:30 MRI and we ended up lying in machines in neighboring rooms. I would much rather stay neighbors in our neighborhood rather than MRI machines! Then we both went over to our Neuro Oncologist's office…yes we share the same oncologist…sad if you ask me.

I have heard there are many who still keep people like me in their prayers and I am humbled by your long term love and support. Please include Chuck Buckhannon in your prayers as well. We are tumor buddies and he needs your prayers.

Another tumor buddy I have met is David Baker. He lives in California but has many relatives that live close to me so I have been lucky enough to spend some time with him. David is a fellow GBM tumor buddy. He was diagnosed 2 years after me and is on the same treatment cycle for the most part. Meeting David Baker will be a memory I will never forget. I was able to sit there and talk to a man who was walking what I have walked and who also shares my beliefs. I loved sitting and talking to him about everything and I learned so much about me and about who I want to be from talking to him.  At first I was a little nervous to talk to him because he was so much older than I was…I was thinking that we would not have much to talk about and it could be awkward…. 2 hours later we were still talking to him and his family and invited to their house for Thanksgiving…and then of course we were there the next day for a few hours…needless to say there was not a moment of awkwardness!

It is amazing how fast you feel connected to people who are traveling your same road.

David Baker needs your prayers as well…I am going to make your list so long!!! J We can all just be the Brain Tumor Group!

So a lot has happened in the last 6 months and I will share pictures of my long beautiful (well long for me! J) hair and all our other adventures that include me being so normal people would never guess I am part of the Brain Tumor Group!

I have started playing the piano again and typing will surely help the agility in my left hand continue to improve so I guess it is time to start up the blog again but this time I want to only report how amazingly normal enough my life is.

I do not have any pictures on my computer so I will have to add a few the next time I write…and it will not be 6 months away!!

Love,

Me

Wednesday, December 19, 2012

Scan Today

So, I am cheating and I know many of you do not do "facebook"; but you check the blog; so I cut and pasted some of Tara's posts on facebook here so you can hear from her in person instead of me just telling you about Tara's life.  So, here's a few of her words:

"So I went in for my scan today only to see my neighbor waiting for his scan! At 1130 both Chuck Buckhannon and I went back to have our brains scanned and then walked over to visit our Neuro oncologist...crazy! Sad that two people four doors down have the same oncologist :-( love you Chuck Buckhannon you are always in our prayers.

Results of my scan were no change on the actual tumor but I have a "ditzel" there...just a little something that could be a vein, scar tissue or tumor but he said tumors don't grow in the same shape and he is not worried we are just going to watch it."

(This was last week)  "Imma seizure girl! Yesterday at Zupas everyone was lucky enough to see me seizing which included hitting everything in reach...including myself. The scene got better when I tried to stand and my favorite left leg would not work so to the ground I go. Thankfully there was a nice strong man who managed to get me into the car and safely buckled. My seizure did not stop while in the car so the man in the car next to us at a red light had quite a show as I hit my mom over and over and then after that went straight to the window and my own face. I hit my hand so hard one time I started to cry but then looked over at my mom and she started laughing!! Seriously? She told me she had to either cry or laugh so she laughed and then I began laughing...the poor people in that car next to us thought we were crazy for hitting things and laughing. We made it to the hospital and as soon as my arm settled down from the meds I fixed my moms crazy hair (my arm kept hitting her hair and her head) and made sure she had no bruises from my little attack! Memories made and lessons learned. I'd rather laugh than cry!
  
(Becky.... .yes, I was scared and wanted to cry - we had been 11 months without a seizure and this one was a big bad scary one.  I hadn't seen it this bad before, but Tara recovered and seems to be okay now - but it does take awhile to recover.  Sometime the week before the seizure; Tara actually played the piano for an hour!  I couldn't believe it and her left hand was working admirably well.  We even played a few duets.  I will take this as a sign of healing.  In the past when she has tried to play the piano; it ended in either tears or a huge headache with Tara plopping on my bed trying to recover.  The brain is just a crazy organ that I just don't get sometimes.  Anyway, as I felt like crying, I of course couldn't because I try never to do that in front of Tara, so I prayed out loud for us to get through this seizure somehow; and then shortly after the prayer, I started thinking how comical it could look to someone to watch Tara literally hitting my head repeatedly and started laughing.  Tara was scared as well and was actually crying some because she hurt her hand while hitting the console; so I tried to deflect her blows on the console by putting my arm over it; which instead moved her "hits" to my head; which was much softer than the console in the car, thankfully, and it didn't hurt my head; just hurt my heart some.  So, back to the hospital we went, where Tara had the familiar IV needles, poking, drugs, etc.  As for today; my heart is so heavy for my friend, Robin, that I am really struggling.  Today was not a good day in the brain tumor world.  But, Tara once again showed me her amazing faith and told me her faith is "not based on the outcome."  It is locked in accepting God's will.  She is stronger than me; I am working on my faith and trust in the Lord; but I still have plenty of room to have faith grow some more.  Tara completely trusts the Lord, I don't think that means she never gets scared; but she does trust.  I try to push the fear away and always have faith there instead, but sometimes that fear rears its ugly head.  Today it did and I am mostly calm about Tara's little spot on her scan - will have to spend more time in prayer, though for sure to keep myself calm.  She's feeling really good for the most part, so that lends me to believing it is likely scar tissue from that surgery in June.  Shapiro said it's close to the incision area; so that could be an answer.  Last time we were worried about the scan, it ended up being dead tissue from radiation; so these little spots have lots of different reasons for being there.  We will watch and see and just keep praying and praying.  Robin reminded me today that prayer is the best medicine.)

Love you all!!!

Sunday, December 9, 2012

My Christmas Present

Becky again.... I know you all miss Tara greatly; but some news is better than no news!  Once again, I have no excuses for Tara other than she is just being "normal" and maybe in her mind that includes not blogging, or maybe facebook is just easier, I don't really know.  But, I do know that many of you still check this blog and I want to tell you the good things as well as the tough times!  So, here's to good times!

Some highlights of the past 2 months:

Spending time with an amazing man, David Baker, who was in town for a few days.  He is a fellow GBM friend who we have been corresponding with.  Tara loved just talking with someone who has been down the same pathway she has been.  No one can REALLY understand what she goes through unless they have suffered the same themselves.  His spirit and attitude uplifted us all.  He told Tara, "you are HERE and you can touch so many lives."  He counseled her to WRITE, because her emails touched him greatly at a time when he needed encouragement, and he thinks she has a gift for that.  So, hopefully she will take his counsel to heart and get back on the blog...  He spoke of the good that we can do and people we can touch; but he also spoke of life on this earth as really just a moment, and that we WILL see our family and be together again and he knows that.  He's not doing so well in the GBM world and our hearts are hurting for his family. If you have a few extra prayers, send them the Baker family's way right now.  They need some comfort and peace.  If you have questions about our beliefs on  being with our family forever and living after this life; don't forget you can always check mormon.org or lds.org for more information.

Thanksgiving weekend FT (family time)
  A hike up Camelback mountain (back in the dark the last 1/4 mile!)
  A 40 minute each way bike ride to Gilbert for lunch and back

I love just seeing Tara get on a bike and be able to MOVE and enjoy it!  Somewhere, somebody took at picture of the bike ride; but it wasn't on my camera so I will have to find it.

Actually, every day, every moment that I see Tara smile or get to spend time with her is a highlight for me.  I still revel in the days that I get to spend time with Tara when she's doing well - the novelty has not worn off for me yet.  We spent so very many days together with her not doing well and it's so very refreshing to spend time with her when she feels better and just watch her face be so ALIVE and happy!  I will never view life the same way again.  I've said this before; enjoy every single moment of every time you can spend with those you love, and make some NEW friends to love while you're at it!

Anyway, on to my Christmas present.  About 3 weeks ago, Tara said to me, "Mom, when are you doing the caramel popcorn plates for your friends this year:"  Well, in my mind I thought - (being the procrastinator that I am) it's NOT the week before Christmas yet!!  Which is when I am usually scrambling to get some goodie plates made to let those around here know we are thinking of them at Christmastime.  It is a large project because we love so many people and is a bit overwhelming at times for me.  Tara actually WANTED to spend time with me, come up with ideas to enhance our goodie plate, emailed me pictures from Pinterest, and said, "how about if we do it early this year and schedule a day to start."  Then, she came up with a shopping list and spent the entire Friday with me a week ago to start this event. Stephanie came over that day as well so it was a huge bonus to have her and the grandkids here as well. We also spend some time 2 more days (partial days because we had other appointments to deal with) working.  Those of you who are mothers of teenagers, have HOPE!  Look what happens when children grow up!  To have a child actually TRY to spend some time with you doing something you really want to do; is nothing short of a tender mercy straight from heaven.  So, this was balm to my soul and pretty much reduced me to tears.  One of the best Christmas presents ever for me!  Yesterday I stopped by to see my little grandkids, I had been sick all week so had been off limits to kissing grandchildren, (so I HAD to stop by and spend a little time after I was off the sick list) and I saw many, many plates at Stephanie's house looking just like mine did!  I was only sad I didn't help her like she helped me!!  But, at least I sent her home with supplies to make her own:)

I was somewhat blue the Wednesday before Thanksgiving - it was my children's "turns" to spend Thanksgiving with their other wonderful families; so I was cooking all day by myself.  No Schlappi relatives came from Utah (last year we had over 30!!!) and our relatives from CA who joined us weren't coming til late Wednesday evening.  So, I had a little pity party as I cooked alone wishing there were others there to enjoy the day with. But, tomorrow will come (reference a conference talk) (or is it Sunday will come) and tomorrow did come, Scott's sister and her husband and daughters arrived from CA, and although our Thanksgiving was small; we enjoyed each other immensely.  So, this goodie plate time with Tara was even more meaningful to me.

The plus side of having married children gone for Thanksgiving is they are here for Christmas Eve!  And I never can complain because 2 of the married kids live here and it's so easy to share with the other families because we get to see them on a regular basis; so if we miss some of the "big days" it's really no big deal to me, I don't know why I was so blue that Wednesday.  So, we all will be together on Christmas Eve, except our good friend and affectionately called "foster son" Jerod is on his mission in Ogden, Utah; but I am hopeful he will get to call us on Christmas so that will be awesome if he can.  Travis will come for a few days from Pasadena.  He can't stay long because apparently grad school is tough the first year and he has to study; but at least he'll be here for a few days.  I'll take it!

Happy Holidays all!!  With love, Becky

Friday, October 19, 2012

Breathe again!

This is Becky.

I have to apologize for venting a few days ago!  Thanks all for being sooo supportive!  The prayers for peace did indeed settle my nerves and Tara and I were able to enjoy our day together.  Dr. Shapiro said, "I think you're fine," which is about as "wordy" as he gets.  Scott, Tara, and myself all get huge smiles and just BREATHE again after those words.  He has no idea what a relief it is when he says that.  We never really know what we're looking at when we're looking at the MRI's, once in awhile he'll say "this is the last MRI, this is the current one" so we try to figure out what is going on in those pictures.  Apparently there is a new machine because the images seemed more clear this time; which is good and bad - easier to see a problem from untrained eyes like ours; which may cause undue panic if we don't know what is wrong and what is right!  He did say the "white stuff" (which always bugs me and I wonder what it is) was just water and not to worry.

Tara and I started our day by visiting Mandy Miller Clive, who isn't doing so well and happened to be at the same hospital we were going to; so we left early, and it was great to see her and her mom. Then, Tara was actually hungry, guzzled a half sandwich (I LOVE it when she actually enjoys eating) and then off to the MRI machine.  She again slept through the test (that's usual for her) and we talked with another brain tumor patient, then off to Jamba Juice to party until the reading of the results.  We were able to take our mind off the reading somewhat.  Backgammon helps as well! :)

The best thing about the "I think you're fine" by Dr. Shapiro is watching Tara as she leaves the office and heads towards the car.  She has the most beautiful, relieved, look on her face and she practically skips to the car.  I love that look on her face and want to see it there forever!

Love you all!  Here's to LIVING!  Enjoy each moment, each day - I know I keep saying that, but we've lived what it's like to worry about the days you have; and so the healthy days are just so sweet!  Today I'm taking my grandson to the zoo; which means I will also get to hang out with Stephanie and sweet little Katelyn which will make my day!!  Thanks sooo much for your prayers!  We always seem to need them and feel their strengthening power in our lives.

Wednesday, October 17, 2012

MRI Eve

Why I am sad tonight? Is it because Tara admitted to being scared on her eve of the routine MRI?  Is it because her legs are hurting for no explained reason?  I don't know. It's always a nerve wracking routine; this "routine" MRI every 2 months.  I should be fine.  Tara has been feeling pretty good (until the weird leg thing started this week, which will likely go away). Is it because my friend's husband is tired and sick every day lately suffering from treatment due to a brain tumor? Usually the night before I am pretty happy knowing that I usually get to spend several hours with Tara the next day.  We are going to leave early, go to Last Chance, Zupas for lunch, then visit a friend in the hospital at St. Joe's; then on to the MRI and Dr. Shapiro.  I will snap out of it in the morning.  Maybe I am just tired. Is it ok to be tired of the constant knowledge of forever MRI's?  We have an MRI, then move on and live life again - that's the good part. After an MRI, we can usually BREATHE.  Oh, how nice that is.  So, tomorrow we will breathe again.  But, until then, my precious daughter is scared and not too excited for her MRI.  I don't like her being scared.  I'm just having one of those "life isn't fair" moments.  This too, will pass.  I will reflect on all our blessings and remember all those people who suffer so much more than we do or have.  So, I've had my cry sessions already today and I will pick myself up, move on, and enjoy time with Tara tomorrow.  I will remember to enjoy the moments that make up the hours.  I will enjoy looking at her cute pixie face with those beautiful brown eyes.  I will try to forget the words brain tumor or glioblastoma.  Will they always be indelibly printed on my mind?  I spoke with a few people this week who reaffirmed to me that every single day they still pray for Tara, 2 1/2 years later, every SINGLE day they are praying.  Praying like we are that she will LIVE a full life here and be free of this tumor forever.  She's already a walking miracle; those were her words themselves - just want it to STAY that way.

Thanks for letting me vent; just had to whine a little.  I will be fine now.  I will pray for peace and it will come.....

Wednesday, September 12, 2012

one more thing

I forgot to tell you that Tara did have to shave her head after the last surgery again.  The doctors prepped her for a skin graft; and shaved so much hair in the process; that she just shaved it off and started over again.  She did have a few people in the public call her "sir" or "mister" so she has been wearing more earrings lately!  I can't imagine anyone ever making that mistake; but I think she's the cutest thing ever; so I'm biased.  It doesn't seem to bother her to cut her hair off - it was easier the 2nd time around.  Anyway, you'll see it's already growing back nicely in the pictures.

Girl's Trip!!!

Here are some pictures from our girls' trip to Vancouver, BC!  I am living the philosophy of cherishing the moments; and this week was FULL of moments!  I thought you would all like to see some pictures since Tara hasn't put some on in so very long.  So, I am doing it instead.  I think Tara is not blogging because she's trying to lead a "normal" life.  That's my guess. Maybe she's tired of being a brain cancer patient.  The good news is that she IS living mostly a normal life.  She goes to work most days, doesn't take naps at work anymore; but sleeps hard as a rock at night - her seizure meds still make her sleepy.  The first 2 days of our trip food made her sick (this had been happening the few weeks prior to leaving) and I was bummed!  We had so very many months of being in that "place" where food made her sick and she didn't want to eat.  BUT, the good news is that it didn't last all week, and she loved a certain Italian restaurant we found, and we even went there 2 nights in a row and she ordered the exact same thing both nights because she pretty much licked her plate clean.  It was chicken parmigiana and I don't remember her loving that in the past; but you never know!  I was just so happy to see her enjoying her food.  Rachel has most of the pictures; she has all the restaurants and such and more pretty pictures; but hopefully mine will suffice.  

I picked Vancouver because Tara is still somewhat paranoid about getting in the ocean with all the infections she has undergone; so we couldn't do the budget trip to CA.  So, thankfully for my beloved "piano account" we took a major splurge!  Tara, Stephanie, Katelyn, and myself flew from Phoenix and Rachel met us from SLC in Vancouver.  I won't go into tons of detail; but we just loved our week.  We saw tons of pretty places and walked around alot.  Katelyn (the baby) was a perfect traveling baby and rarely cried.  She didn't hold us back much!  Tara said that it is sad that she was going to go home from vacation in better shape than when she left!  But, on vacation, she has more time to walk around and exercise than she does at home!  Tara did make it on a hike that was actually 1 hr 45 minutes long; and it was lots of uphill on the way up to a beautiful lookout over a lake with islands and mountains around.  Anyway, about 3/4 of the way up (Rachel was hauling up the mountain) Tara said she just couldn't go anymore.  Said she was dizzy and felt really yucky.  But, she decided to push through it and did make it up to the top.  I tried to memorize the moments watching her actually hike.  Part of me was sad that this treatment has taken so much out of her that she struggles with a hike this size; but the much larger part of me was so incredibly grateful that she was HIKING at all!  I had fleeting memories of her last year at this time - last year she was mostly tired and on the couch or in the bed alot; with a few sporadic days of work mixed in.  She has come so far since last year!!  Anyway, we got back down the mountain in 35 minutes (took about an hour to get up) and Tara did say after it was all over that she was glad she did it and pushed through the dizziness and sickness.

We loved eating out, never preparing meals, laughing, sleeping in, and enjoying baby Katelyn!  Most of all, we just enjoyed being TOGETHER.  I loved watching the girls' faces as they were in wonderment at the beauty around them.  We especially loved Butchart Gardens and spent almost a whole day there.  I loved spoiling the girls and took them to a really nice restaurant once (and other just NICE restaurants the rest of the time) and gave them some spending $ because if it was up to them; not much spending money would get spent!  I think that they spent over an hour in the Butchart Gardens gift shop picking out their fun things to spend their money on.  Whenever I give them $ on a girls trip; the rule is they have to spend it or lose it; so they usually comply!  

Saturday (the last day there) Rachel had flown back to Utah, and it was just Stephanie, Tara, Katelyn, and myself.  I never got tired of walking around and looking at pretty gardens; but I think I wore out Stephanie and Tara by Saturday.  They were wondering why I still wanted to walk around every last pathway and why they couldn't keep up when I am the magical age of 50; but I told them it's because I'm not up twice a night feeding a baby (with no naps in the day), and I'm not on seizure meds; nor has my body been ravaged by cancer treatment.  All good reasons for tiredness, I would say!

Anyway, right now Tara is in what I would call the "rebuilding" stage.  She's trying to rebuild her strength.  She has another scan next month; seems like those scans come around way too often.  We have a friend going through this same disease that needs your prayers - his name is David Baker.  He is not as lucky as Tara and his tumor came back right after radiation; which was lightening speed.  But, the good news is he is on a new clinical trial and after some injections of a virus made from his original tumor; the new growth is shrinking.  It's a tough world; this brain tumor world; but we have been so blessed.  Blessed by so very many miracles in Tara's life; and blessed by all the angels around us - our friends and all you who pray for Tara.  Please know we so appreciate your thoughts and prayers.  Love you all!  Becky


















Sunday, July 29, 2012

Summertime catching up

Summertime, summertime...

It's been too long once again since this blog has been updated - so I'll post a few highlights of this summer:

* Tara recovered from surgery #7 pretty quickly (relatively speaking).  I was so happy to see her return to her pre-surgery state in about 3 weeks.  Her stitches came out; and Dr. Smith said her head looked "fabulous" and he told her she could SWIM!  It's been forever since Tara swam in a pool.  She did get in the pool this week; but was still afraid to get her head wet.  Thanks again for all your prayers - we certainly dodged two big events with that last surgery and we're so very grateful.

* She did 3 speeches - she's actually getting amazingly good at talking to people,especially the young women.  This brave girl told me that surgery #7 came at "a perfect time" because she could speak at "Time to Blossom" for young women (250 girls) and then go to the hospital a few days later.  She also went to Prescott to speak at a girls' camp; and spoke in her uncle's church to another group of young women and their leaders. Her next talk is to a women's group in her area.  She feels like speaking to others is part of her purpose here and really genuinely wants to help others if she can by relating some of her experiences.  Her talk brings me to tears every single time.

* We were driving home from Barrow's one day and passed a "hospice car".  Tara got a very determined look on her face and passed that car saying, "I NEVER want to see one of those cars EVER - it's not ever going to come for me!!

* We went to Utah for our Schlappi family reunion.  2 years ago for this same reunion; Tara got off one day of radiation so she could go.  She wasn't in the best of shape 2 years ago; and I stopped to reflect how different this reunion was.  Our own family left 3 days early for the reunion so we could spend some time in the mountains together before the reunion started.  Tears came to my eyes one morning as I watched Tara get so excited to get on a quad and go riding in the mountains.  SHe seemed so full of life and so happy to be LIVING and getting out!  She couldn't ride for too long because the helmets bugged her head; but she got OUT!  She stayed up late playing games and generally had a great time.  I don't take those moments for granted anymore - never will again.  I am just so happy when I see her so happy!

* Rachel & her Nate (we have 2 Nates around here now) and Travis are all here for the summer - so we have had some great times being together - it's a wonderful thing for a mother to have her family together.  It won't last long - Travis is going to Somalia for a year to teach school there (YES, we know it's the most dangerous country on the planet), Rachel & Nate leave for BYU in a few weeks, and Jerod left on his mission last Wednesday.  I told Travis that I have a daughter whose life is in danger through no choice of her own; and he's WALKING in to danger - how much can a mother take?  I just pray he returns safely - he's actually going to SomaliLAND which is somewhat safer than Somalia.

* We had some hard times when our friend, Rick Oehme, died.  He was a fellow warrior in the GBM world.  Tara and I cried our eyes out - it's so tough to know people who fall because of this dreaded disease.  Tara did shave her head again - she lost so much hair when they prepped for theskin graft that she just took it off again.  As usual, it didn't bother her too much - always bothers me more.  It's already growing back quickly.  I did make it through this shaving of the head without crying; so I guess I'm learning to deal with more than I used to.

* I have learned again and again to enjoy the moments - and I'm stealing a WHOLE WEEK of them next month - for our annual girl's trip we are going to Vancouver, BC, and Victoria BC.  I picked a spot that was nowhere near water that you would want to swim in; just water to look at because I knew Tara would be paranoid about swimming!  So, our lower budget trip to CA got switched to Vancouver.  And, we have to go a whole week to save money by flying on Allegiant Air.  So, I get to steal the girls in the family away for a whole week and I can't believe it's really going to happen!  I just want to live life to the fullest; and I know you can live life without going away on trips, but I do love these trips - so I threw away practicality and we are going!!  Attendees are:  Stephanie and baby Katelyn, Tara, Rachel, and myself.  YES!!

* I've personally spent more time this summer being a grandma.  Since doctors don't completely fill our lives anymore;  I have enjoyed other things.  Brigham and our new little Katelyn are awesome and I just can't get enough of holding that precious little new granddaughter.

Love you all!   I keep encouraging Tara to write.... maybe she's living in the world of no brain cancer now and that may relate to no blogging, I don't know.  But, she loves you all and loves to be able to help where she can; so please feel free to email her.




Wednesday, June 13, 2012

Surgery #7

Becky here... My brave girl is now behind the double doors again. You would have thought she was going to a party. She is so amazing. Lest week she told me "mom, the timing is perfect! I can speak to the young women at the Conference and then go have surgery! Rachel sccompanied us to the ER today. We laughed a lot, worked on crafts, and played some card games. As Tara keeps reminding me, we need to celebrate LIFE. Josh and Scott showed up in time for surgery. We felt the power of all your combined prayers. We were all calm before surgery (well, maybe not calm enough - we were a little too loud at times). One of the ER docs told us that the markers for infection were low - that means she may escape this without all the complications of infection. She is going to have a skin graft which will complicate the healing process as well as help the healing process. They will take skin from her abdomen. The surgeon wants to take pressure off the incision area so it will stay healed this time. When I asked the dr why the hole appeared again, he said that the effects of radiation worsen over time instead of improve and her skin actually becomes even less healthy. Gee thanks, I never knew that. When we signed up for treatment we pretty much just did every thing they told us to do. We signed pages of releases and listed sides effects and did not really know what we were getting in to. It's probably a good thing we did not know - it's probably better to take it a day at a time. We saw familiar residents, nurses, and ER staff. We were hoping not to have seen them again, especially this soon; but they are generally a happy, helpful bunch of people who are sorry to see Tara go through this again. I did not cry as we left her. I feel somewhat heavy hearted, but yet peaceful as well. It must be the power of all your prayers. Tara was a little sad when she heard the beeping of the IV noise. It reminded her she was in the hospital and probably was a foreshadowing for her of what lies ahead. Thanks to the power of combined prayer, we are hopeful this will only be a little bump in the road instead of a huge detour. I am still amazed that she had a smile on her face all day long. She really does mean 'come what may and love it' and lives it fully. Yesterday was Tara and Josh's 2 year wedding anniversary. So glad they got to celebrate NOT in the hospital. Love you all so much - thanks for your prayers.

Later....  Tara finished with surgery and we got the report from the surgeon. I was so happy and relieved! I am a believer in the power of prayer. Dr. Joganic did not have to do a skin graft aftter all! AND he is seeing no signs of infection and so we will not see our infectious disease doctors either! He took out the titanium plate and screws that we could see, then shaved the bone where it was protruding. After doing those things, he was able to stretch some tissue around and sew her up. He believes the tension will be off the wound enough now that this was worth doing instead of a skin graft. He said that her 'burr holes' from surgery one had filled in with bone tissue and scar tissue so the titanium plate is no longer needed. We hope this will be a lasting fix. She will have the usual pain of recovery; but without these complications; she will get through it much better.  Thank you all sooo very much for your faith and prayers!

Wednesday, May 30, 2012

Surgeon's update

Becky here... Tara met with the plastic surgeon yesterday; and he gave her until one week from Thursday to give this head time to heal on its own.  I'm taking that as a good sign!  He can actually "see" titanium with his naked eye (her head has another small hole) which is a problem; but he told her to put silvadine cream on it; and he would check it in a week - which gives me hope - however slight, but still a little hope that her skin will close over this opening by itself. "Seeing titanium" means he can see one of the small titanium plates that were put in her head after the 1st original surgery.  He didn't seem too worried about infection, but we never really know about that until they get in the head.  We thank you all so much for your prayers - maybe this infection is not going to be a problem!  I keep hoping and praying for that!

Tara talks to 250 young women at a program called "Time to Blossom" on Friday.  She has been working hard on her talk; accompanied by pictures and I'm so glad that surgery won't get in the way of this event!  She really loves to talk to young women; and feels like if she can help someone; that is why she is here.

We loved our weekend away in the mountains over Memorial Day.  Tara actually felt good enough to ride a bike a little in the mountains, and play a little "family basketball."  She really wants to build up her strength; she is still quite weak and we are all hoping that she can get through this bump in the road and get back to the strength building phase she was in before this.  We had great times getting outside, playing games, and hanging out together.  We really missed Stephanie & Travis & baby Katelyn; but the rest of us were there.  Rachel's Nate (we have 2 Nates now) got his first little family trip in - he's stuck with us now!

Love you all and thank you so much for your prayers!

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.

Wednesday, April 25, 2012

Prayers Needed!

Dear all,

I need your prayers. My friend is dealing with multiple lesions in the brain. She is still unfortunately undiagnosed. This means that the doctors are still guessing at what she has and how to treat her.

They cannot biopsy because of the location of the lesions... but still treat her the best that they can...this includes guess work. She has been through so much this last year including learning to walk again and long long weeks/months of hospital stays. She needs your prayers. I am calling on you to help her like you helped me.You all gave me so much encouragement/strength/hope/reason to live. She needs that right now.

Pray for peace, the ability to sleep, and a diagnosis. Pray for her doctors and her family. Please pray for her by name. Her name is Mandy Clive. I know that your prayers helped me emotionally get though this. Please be her angels now. Please I am begging of you. It is killing me to be on this side of the treatment. I do not know how you did it. I do not know what else to do. I cannot take her lesions away. I cannot take her pain away or her fears... I all I know I can do is pray with faith and ask you to do the same.


I know prayers work. I am living proof.

Please...pray for her.

-Tara

Friday, April 20, 2012

The Sun is Shining!

Becky here...

I just have to post - I need to say again how INCREDIBLE it is to have Tara still feeling good!  I'm still adjusting to this.  When people ask me how Tara is doing, it feels so good to say "she's really feeling good" and have that be the real truth.  In the past I have usually been pretty truthful when asked how Tara is doing - I'll answer things like, "today is ok", "she's not good right now", or "fair", or "not good today".  None of my answers were ever "she's doing really well!"  Now that is the answer.  The sun seems brighter (probably in reality IS because it's almost May in Mesa!); the flowers are prettier, and everything around me is just happier.  Friends of mine say that I look different (well, I did have my hair highlighted and cut) but it's more than that - I am LIGHTER - there is a weight off my shoulders.  It is almost palpable.  I am still just reveling in the moments that Tara can live a "normal" life. 

She didn't post about Disneyland - she and Josh DID go and it was a treasured day for me to spend the Saturday before they left with Tara planning their trip.  It was soooo refreshing to me to have Tara getting excited about a getaway with her husband without any IV's tagging along, doctor appointments looming ahead, or anything in the way!  (actually we did postpone an MRI but I ordered her to GO on this trip and this MRI was not getting in the way of her fun).  She said she actually went on rides; and the strobe lights started a seizure; but then she closed her eyes and it went away - no more strobe lights or 3D for Tara.  They also went sightseeing in LA and I was so very happy the 2 of them could get away together out of state!  They wanted to do Disneyland for their honeymoon, but of course, couldn't. 

Now Tara is in CA for a friend's wedding. Yesterday as she bounced around being so excited for her weekend with her old roommates and friends, once again, I just watched and smiled at her and just LOVED seeing her feel so good.  She had energy; her eyes are alive and happy, and I just can't say enough how AWESOME this is!  How great to get on a plane and not worry about seizures, head leaking, meds, or doctors.  What a treat!

I have learned how to enjoy the day.  Today the sun is shining, and I can't project into the future - I have learned not to do that.  I just have to enjoy TODAY and believe me, I am!  I don't see Tara nearly as much - I do miss her; but it's so awesome to enjoy a more alive Tara when I do see her!  I love having her live her life.  Josh is so happy to have a wife around that isn't sick as well.  He has been so positive and supportive through these past 2 years.  Can you believe it's been 2 years? 2 years ago she was having crazy headaches and this whole thing started.  It's really been 2 years since she felt this good.  It's a good thing we did take this life day by day - we didn't know what we were getting in to when we started - we just had to take a little at a time - but now she's DONE with treatment!  She's only on 2 seizure meds now - that's awesome!  Maybe someday those can be gone as well - but it will be awhile before that happens.

We still have hurdles up ahead; but today, we are enjoying life.  We appreciate your prayers in Tara's behalf - many people with her tumor don't even live 2 years - so she's already a miracle!  And she will CONTINUE to be a miracle! 

Love you all,

Becky

Wednesday, April 4, 2012

Track 14: my very favorite song...you will see why

 So my little sister got married to Mr Nathan Anderson and I am very happy to have a new brother in law as well as a happy married sister. When we left the wedding dinner Nathan and Rachel had chosen their favorite love songs and put them on a CD for all of us to share. I was excited because some of the songs looked new so I popped that pretty white CD into my car and began the jams. 
Track 1 was good as well as 2-13 but my heart stopped and fell in love with Track 14. It was a little upbeat song about lovers dancing and it uses my favorite word multiple times...  hush. That word seriously is so beautiful. I have loved it since I sang with Rob Gardner in the 11th grade. 
Back to the point. I am obsessed with Track 14...considering making 14 my new favorite number dancing to the song...have it memorized and then one day I was downstairs in our humble abode with a serious craving for my Track but it was all the way in the car so that meant that I would have to walk all the way up the stairs and back down and go in the car to get the CD. Too much work for me... but trusty Mr. internet bailed me out of all that strenuous exercise. Found it!!!! and there is even a music video!!!! I had not watched a music video since well...I had no idea. Back to the point again. I decided to watch the video of my Track 14 (I had to learn the name of the song by typing the lyrics into Google...thanks Google where would I be without you?)
 So I watched this video and then made Josh watch it. He was reluctant saying that I was over playing the song and that I better be careful or he would never let me play it again. I won him over and we sat together on the floor to enjoy this together. 

Now I have held off for quite some time...not sure where or not I should share this but today I just felt to urge to show the world my very favorite song coupled with a video that reminds me of me. Maybe I cried a little or maybe I am lying to you and bawled a lot. I think you will see why. Please enjoy my Track 14


Becky here,

Ok, Tara, I cried as well; but not until I could see it full screen and really see what was going on.  Here is the link for all of you who had the same trouble I did.  http://www.youtube.com/watch?v=R7Gf2SOmz5Q

I will post later... wanted Tara to post first - but you cannot imagine how amazing it feels to have Tara back!  It's been over 2 years since we've had THIS Tara back - but we'll never see the previous Tara again - now she's much deeper and stronger.  It's like a heavy backpack full of rocks just emptied it's last rock.  We still have some pebbles there - a few hurdles ahead of us; but I think our faith has been refined throughout the past 2 years, and we can deal with the upcoming hurdles.  Thank heavens the Lord was there by our sides to help us carry that backpack through the last 2 years.... couldn't have done it by ourselves, that's for sure!

Tuesday, March 6, 2012

Little bumps

Well I will not take back what I said earlier about how good I fell but I am experiencing a tiny bump... I think I may be passing a kidney stone or a have ridiculous bladder infection. I am happy to know that both those things that normal people would experience cancer or no cancer. Happy to update that I am still working on becoming normal. :) Josh even brought up the idea of going to Disneyland for spring break. It is where we were going to go for our honeymoon but were unable to make it...I made a radiation mask for my head instead. Since surgery 1 the idea of a roller coaster...even the kiddy ones just scared my head. The thought of it about cracked my head open but yesterday Josh was talking about it and I started to smile from the inside out. My heart felt okay with it and that led to the beginning of a smile on my face and then when my brain started to be kinda okay with the idea I had no choice but to let out a full fledged smile!

My head still has told me "no" on the crazy rides that whip you around but I am thinking yes on the kiddy rides and the idea of walking around the whole day. I think I can walk around the whole day and watch the parade and then finish with the fireworks! I think my head is ready to be normal again....or maybe my head has been ready but my fears are starting to subdue. The docs have said that my head is plenty strong and I am able to do what I want! Smith assured me that my head is even water-proof now that the skin looks amazing. They  have said yes, but me has said no for a long time. I have the fear of ending up back in a hospital bed and I have been there and done that, tasted the bitter to know the good... and I know what I want and the hospital bed in not in that picture so I try to avoid things that could possibly lead me there. So I have this fear...rightfully so yeah? Been working on it though.

There have been a few times these months that I have had times to gain confidence in my head. I take baths and submerge my head only to dry my hair and stare in awe of the beautiful scar that is still beautifully intact and together...no silly holes! Then gaining head confidence with an AMAZING horseback ride (I will not go off on how much I love horses now...just know that I love love love love love them...to the point where  I would give up all chocolate and ICE CREAM!!! just to go on a ride and I love me some chocolate and ice cream...it's a big deal) So back to the picture...I was lucky enough to ride and decided to go out on the edge and ride without a helmet and was able to let my pretty Lexi take me for a ride that consisted of more than just a slow cautious walk. I guess that day has boosted my head confidence further because since then I have been a little less cautious about combing my hair and I went to a very dusty rodeo (Lehi Days) and was able to not have to worry about anything other than a sunburn on my bald spot. Now I am going so far as to  consider kiddy rides??? What is going on? Ha, I can't wait until I get to read this in 30 years and show my kids...they will think I am such a wimp. :)  So in the end... my brain and I have decided that we are fully confident that it would be okay to Disneyland this Spring Break!!!! :) So we may be headed to the second happiest place on earth! (They obviously do not know what it is like to be around all my best friends and family) The journey back to what I think normal is  continues! :)

Princess Tara

PS. if anyone knows of good deals for tickets or hotels just email me @ tarabodrero@gmail.com

PSS Kristine Elise Please email me too. I would love to hear more and meet you.

Wednesday, February 29, 2012

It feels so good to feel good.



Hey all it is me here! Yes me I know surprise surprise. I know that my mother has been updating a bit on what has been going on lately but now it is my turn from my mouth/fingers... whatever

So my friend asked me if I had heard this song this morning.  

She told me that it reminded her of Josh and I. :) 
This video to me reminds me not only of Josh but my own family, wards, bloggers, and friends. You have all loved me though this. If you did not believe in miracles...you should now. If you are still hesitant feel free to just come on by and see me. I am a crazy lunatic!...just like before. Everyone is noticing and let me assure you...I am too. It has been more than two weeks now that I have been able to look people in the eyes and say "I am doing well, so very well" when they ask me how I am doing. There is no pretending...no putting on the happy face...no shoving food down just to try to eat. I am me. I am back and it feels good. I know that previously I may have mentioned that I felt better than ever and I thought that I was feeling what normal was...WRONG! Now I know what it is like. I feel like I am pre-chemo, pre-radiation, and pre- tumor...It amazes me still to wake up and not have a headache. I cannot believe how many nights I tried to sleep like that only knowing that the next morning I was bound to wake up in pain. Now I wake up to a beautiful alarm clock!!! Josh thinks that it is annoying but I do not know if he has been woken up because of pain before. I am just so happy I turn that baby all the way up and then get to push snooze!!! What a treat! There was no snoozing from tumor pain...no sleeping though or going back to sleep. I seriously am so grateful for the way I was able to wake up this morning. 

It all feels like a dream...dad says nightmare. It is the most vivid dream I have ever had and I am grateful for that. Had I not remembered how horrid it was to climb the stairs at work I probably would have been really mad at the stubbed toe I got instead of grateful that I got to skip up them two by two. I am feeling so well. I want to clean, I want to work, ride my bike, do the dishes, run errands, and sweep the patios... and guess what...I get to. I have a body who now says it is okay to do all these things. Saturdays chores...I know why I loathed them...I did not know what it was like without them. Now I know, Now I want to do them. Dishes...I got to take a turn the other night...not sure if mom wrote this or not. She told me that it was not my night so I did not have to do them...it was not my turn...I then assured her that it had not been "my night" for over a year and a half and that it was okay...I could take a turn...I have a lot of making up to do. I get up and down and out of bed like a pro and sometimes make Josh help me just cause...not cause I need it. 

Okay back on the subject of my Joshua and all of you. Let this be part of a thank you. I watched that video and heard the lyrics and seriously saw myself with my own personal angels carrying me though. I know that I did not endure this trial alone...I took the whole neighborhood and parts of other countries with me. You will never know how grateful I am for that. I hope that one day I can show you how grateful I am...because guess what...I can. You all have served me just by reading, or visiting the page. I know that you check and that makes me so happy. I am one very happy girl. I am so grateful for where I am right now. I had a lot of hope that one day this day would come...that I would be able to be here and feel good too. That I would have motion is all arms and legs...all little toes to. 

I am looking healthier according to everyone who has seen me at different stages...I guess it is my skin and my countenance. No more pretending I feel good. No more making myself feel good. I straight up, literally feel good and let me tell you.... It feels so good to feel good.

Hopefully now I have a better understanding of trials and how people really need to be loved though their trials. It is not a "it is nice to be loved"... no I consider it a "need". I know that I 100% needed it. I want to love those around me through their trials because I know...they are going to need it too.

Thursday, February 16, 2012

We have Tara back!

Becky again...

Still holding our breath, afraid to say Tara is feeling better because we don't want to be hit over the head with a 2 x 4 again...

Yesterday, Tara showed up at my house to help ME with cleaning (instead of the other way around).  She swept the front porch with a vengeance, and I couldn't get her to stop doing dishes and getting every single item OFF my kitchen counters.  In her own words, she admitted that she hasn't felt this good since before surgery.  She wants to do "Jillian" every day and we had to restrain her from trying to exercise after she had cleaned for a few hours.  I have to say for the past 1 1/2 years, I pretty much have had Tara over here for dinner on a semi-regular basis (Lori Bodrero has her the other half of the time) and I usually do the dishes while Tara rests after dinner.  Often Josh would pitch in and help; but most of the time Tara was just too tired.  As we were trying to get her to stop cleaning the kitchen so we could go visit Stephanie & Brigham (who returned from being in NYC for a month) she said it was "her turn" to do the dishes and that she had had a 1 1/2 year break and now it was her turn!

Scott said yesterday that he doesn't feel like he can ask the Lord for anything in our prayers; our blessing list is so long! Some of you may have an idea what it is like to "get your child back" well, for now at least, Tara is back and we are completely enjoying the miracle.  She is back, a deeper, emotionally stronger, Tara.  This experience has changed us all; we will never ever take life for granted ever again.  We truly appreciate each day that Tara feels good - it's like a huge breath of fresh air descending on us.  Remember the scripture in 2 Nephi that talks about opposition and how you have to know the bitter to appreciate the sweet?  We're appreciating the sweet!

Life is good - house is clean & ready for the wedding.  All that is left is to put pictures in frames, run some extension cords, buy some groceries for the throng that will descend upon us, and enjoy Rachel and all our visitors!

Love you all!

Becky

Monday, February 13, 2012

Holding our Breath

Becky here...

I noticed Tara hasn't posted in a long time; so I'm going to update you all.  I, for one, am holding my breath.  Can I really say that Tara has felt good for 2 weeks in a row?  I don't think that has happened for over 18 months, truly.  It's scary to say she's feeling better; because in the past when we say that, something happens!!  Here are signs to me that Tara is doing better:

I don't see her as much (I quite honestly, miss her; but am SO glad she is able to live her life!)  In other words, we aren't at doctor's office constantly, she isn't here in Nate's dark room trying to make her head stop spinning or hurting or just feeling lousy in general, and she's at work instead of hanging out with me:(

She had her biggest 2 week paycheck since May of 2010.  That means she showed up at work on a regular basis.

She rode bikes with Josh 3 miles to his parent's house and back!  That's a total of 6 miles!

She smiles more

She doesn't bust into tears while trying to play the piano as often.  She has struggled with the use of her left arm - we're not sure why - somewhere in the midst of the 5 subsequent surgeries, chemo, and radiation, some cognitive traits are a little off.  One of them is the brain telling her left arm what to do.  That makes piano difficult.  She said she has to "look" at her hand to tell it what to do instead of just sending the message from the brain down there.  Weird.  Dr. Shapiro has no reasons for this - just "oh, maybe chemo, surgeries, radiation...  After the first initial tumor removal in May 2010; everything about Tara still worked properly.  Her dad gave her a pep talk and reminded Tara that some people have to learn to walk and talk again; all she has to do is work her left hand and re-learn some piano again (and work on some math skills and reading out loud).  As she was practicing last week, she got excited (for all you musical readers out there) that her hand could "feel" what the interval from an octave to a fifth was again.  That's progress!  So, when I'm tempted to whine (which I do much more than Tara does) we have to remember that Tara can work at these things and regain abilities back again.

She has some friends to have date nights with and loves it!  Some sweet new friends of hers in the new ward had a little celebration on her last chemo pill night.  They had pizza together and played games.  She felt rotten that day (due to the chemo) but rallied and wasn't going to miss this party from her friends.  It really helped (I think) distract her from her sickness.  She even took her pills with her so she could take them there and stay longer to play games!

She told Scott, "yes, please" when he asked her if she was ready for a ride to work this morning instead of a different sort of text resembling "yes" "I don't feel good" "can't, I have doctors".

So, those are my signs.  I'm so glad she's happy.  I told her that Josh is probably enjoying having a wife who isn't sick every day. I don't really know how her legs are... she doesn't complain.

We did have a struggle with seizure meds this past month. She's starting a new med which will replace the med which makes her lose her appetite.  So, she was "overmedicated" for awhile and she was acting somewhat drunk again with some loss of function in her arm, balance, and thinking.  Thankfully, she seems to be getting used to the medication.  I dream of the day when she's only on one seizure med.   I pray the seizures stay away so the meds can be regulated.  Her last seizure was New Year's Day; but she had a small one last month which she was able to control without meds.  (Prayer and holding her arm down and breathing deeply sent it away!)  Our prayers also include the constant prayer that the tumor be rebuked and STAY AWAY.  Next MRI is March 7th; and we will continue these scans every 2 months.

Now, we have a wedding at this house in 6 days!!! If you want to see cute pictures of Rachel and Nate; check out her blog at rachelschlappi.blogspot.com. Yes, we will have 2 Nates in the Schlappi family.  Rachel calls her brother, Nate, "little Nate" now which I'm not to sure he likes too well:)  Happiness is in this home.  Ryan, Stephanie, and Brig have been gone since the first of January; but Steph & Brig come back in a few days to help light life up around here!  I have missed that grandson of mine. (and his parents)  Ryan & Travis fly in for the wedding; as well as many other family members.  It will be PARTY TIME and I am so glad we paid a decorator and a food person; so I can enjoy all the people and events around here!  All is done except placing pictures in frames, cleaning the house, stringing extension cords to lights, and touching up the yard one more time.  I even painted the deck doors and walls that Casey destroyed. (dog)

Another really happy thing is happening around here - Jerod's mission papers are going to be submitted the day of Rachel's wedding!  Jerod is an amazing example of strength for all of us.  He's had some challenges lately; but his mission papers are going in on schedule. Go, Jerod!!!  He has been a blessing in our home as well. We will miss him when he leaves in June.

So, we're getting through our days and most definitely counting our blessings.   I pray every single day for Tara's life and every single day am grateful she is here with us.  I look at life so differently now.  I can't project into the future; I have to take each day by itself and enjoy it.  I can project to SATURDAY, however!

Love you all!

Becky

Saturday, January 28, 2012

Picture of Play Place

Here's the picture Tara referred to in the Tampa airport - finally got it off Jerod's camera...

Wednesday, January 18, 2012

Cruise pictures!

Becky here... Tara can talk about these pictures; but here are some you can look at!









Monday, January 16, 2012

Tomorrow Begins the End.

Tomorrow night I will be privileged to properly take care of those four pills sitting in my medicine cabinet...one of the first, one important cabinets that we  unpacked since we arrived here in our lovely place. I am ready to take them. Tuesday night, Wednesday night, Thursday night, Friday night...my heart is racing just thinking about it. the thought that the chemo pills will be gone and will not be coming back. Done Done Done. Just a few more pills the size of my pinky finger to swallow and then they are all gone! I knew I could do it. I just can't believe that it is here...like this week. I was taken back last time we had a scan and I realized that this would be the last treatment but now the treatment time has arrived and it is time to finish. It is time to try to be as normal as I can. I am noticing side effects from radiation/surgery1,2,3,4,5,6,/chemo/other meds/etc... just little things. I get frustrated with myself until I remember what my body has been through and what it still has to go through. I realize that there is some healing to do and I become extremely grateful for this body that I do have. My legs ache and ache all the time but hey...I have legs and they walk pretty well and even run...on most days you may even catch a little skip in my step. My arm seizes but we have meds to help and thus far I have only hit my dad and mother-in-law in the face... I have an arm and it works pretty good most of the time. My little lefty does not like the piano right now but we will see if we can work with her and see what we can do. I am the Relief Society Pianist and I guess it is good for me...I used to be able to play every hymn and even embellish on a few now I am struggling to read as fast as the music needs to be read and play the right hand... That little trooper does pretty well but my little lefty needs help. I promise I think I am telling my brain the tell it to move but it doesn't...then I am left in confusion trying to find it with my eyes and then put it where it goes and then find where I am with the right hand. This is all happening while everyone else is trying to sing... I am hoping that this is something that will help everything re connect and be one of those blessings in disguised. For now, I will just embarrass myself twice an hour every Sunday...it really is not that bad...I have almost all my hair back and most of the people can't play it much better than me (that's what I tell myself :))

We have been doing the glass half full thing at dinner when we go to my mommas for dinner and I hope that I can be one of those half full people.

Tomorrow tomorrow I love ya tomorrow you're only a day away!!!!!!!!!!!!!!!!   sing it Annie

Sunday, January 15, 2012

De-medicated... & sleep-overs

Well I have gained more control of my body and my typing abilities are much much better...not to say that mom is not going to have to edit this. Lately I have been asked a lot about how the cruise went and how I am feeling. How I am feeling is the standard question but the cruise is a new one I would like to touch on for a bit.

The cruise went wonderfully. All of our planes arrived on time and the boat did not sink...yahoo news shares of other unfortunate cruise boats. I seriously did not think it was possible for a cruise boat to sink. Anyway....Josh, Jerod, Momma and I were on the first trek across the country and man was it a journey to remember. I think the think I will never forget was the layover in Tampa(n) Florida (mom no editing here this is my journal/blog...)  We had a little mix up with words and a few of us...names will not be used... struggled with where our long layover would be...We spent the night in Florida, well in the Florida airport. as soon as we got off the airplane our eyes looked all over for either the softest carpet or a few chairs without arm rests in between them. There were no chairs to be found in that terminal and let me tell you...we tried the carpet spots and they were cold and hard. I was the only one with a pillow and a blanket and I was cold! (well I am always cold but still!!!) So we decided to venture further... there had to be something else out there. Some place that was nice and warm, cozy and quiet and oh ya don't forget that we are carrying ALL of our baggage with us as carry-on's...not checked to meet us at our final destination (San Juan). This meant that we had the either have someone stay up and keep watch over all of our passports, tickets home, cruise boarding passes, wallets with id's or we just had to hope and pray that we could find a way to sleep on it or wake up if someone was stealing it. We of course chose the latter and this was after we found our cozy place to sleep for the night. We realized that where we were was the correct terminal we needed to be in. We would not have to go in through security and we had an early flight. If we left this terminal we would run the chance of missing our early flight the next morning because we had to go back through security with all our massive bags that most certainly did not look like carry-ons. So we decided to find a place to sleep. On the floor...tried that...nope. On the chairs...no way with the arm rests! This was getting frustrating and it was past midnight. I was about to just go back and dump out my bag to make a bed of clothes when we saw it!!!! The children's play place! Perfect!!!! Yes ma'am that would do! Of course we were not planning on sleeping on the trains or  the planes or even the cool puppy in the corner but all of our eyes immediately targeted the cushions on the surrounding edges for the parents to watch the children.. We looked around and decided that since there were no children on the play area there would be no parents...plus! Then we looked at the time...1:30am...smiles...looks like we have this place all to ourselves! :) We ripped those cushions right of those edges and made ourselves comfy cozy beds. Mom used my jacket as a blanket, and we threw all the valuables in Jared's backpack which he then wore around he stomach as he slept...or attempted to. I was all ready to go...Teeth brushed, meds taken pjs on but the light was still on...and I had this feeling that no one...no matter how nice I asked...was going to turn it off. Then came the music and the announcements over the intercom. Lucky for us something was not right and there were fix it men on the terminal and cleaning people... It went on and on. Luckily, Josh and I had our ipods and we turned the up...rather high...covered our faces and were able to fall asleep only to be woken up by little kids playing on those planes and trains...even the puppy in the corner. The funniest thing was to sit up and see all the parents sitting on the benches without any cushions...just the hard wood! The cushions were Velcro-ed to the wood...hope there were no splinters. I was not the camera lady so I do not have the pictures but Jerod if you read this please post one!!!


The trip was amazing...that was just a funny story I just had to write it down...even if it is just there for future posterity!

I love life

Tara

Thursday, January 5, 2012

Starting the New Year right!

Mom please go change all my errors...I am doing my best butst it ius taking a really long time to type just a few words.  (now mom is editing)

All - I am bit drunk off my meds... dilantin (seizure medicine) levels usually ride between 10 and 20 and I am coasting at a sweet 38.5. Not good. Okay, can't type very much longer. I had a seizure Sunday and have kinda been sleeping since then. I think I do weird things and I know I run into walls. I am glad I have friends who help me and family to love me unconditionally.

My scan looked good (Tara had an MRI today) though, no tumor!, and this whole med thing can be fixed so don't fret I will be sober in no time.


I still don;y unerstadn whay people enjoy getting liek this? (she's referring to being drunk)

Editor - mom here.... yes, we had sort of an emergency MRI this morning because since Tara's seizure Sunday; she definitely has NOT been herself.  Saturday night we had a fun New Year's Eve together as a family - she was playing Taboo, being her little competitive self and she seemed really sharp (with her mind) so I always love seeing Tara more like herself - so that was fun.  But, Sunday, she tanked again.  We are going to have a heart to heart with Shapiro on Tuesday and hopefully change these seizure meds because they don't seem to be doing much other than making Tara lose her appetite and making her sleepy and possibly stomach sick also.  Sometimes the side effects can be worse than what the meds are trying to help!  Anyway, good news about the MRI; but we have to deal with the meds problem somehow.  This year should be the year to rebuild Tara's strength and body; and it's tough to do that when she has no appetite.

Tara said that I can safely tell you she will post next week sometime about the cruise - we are awaiting pictures off Rachel's computer - and the rest of her life.  She just can't type coherently yet.  We did go on the cruise with no complications with seizures.  I'm glad we went - although Tara did not enjoy eating, and she was sick for about 3 days - she still enjoyed being with family, seeing the nature of the islands, and playing lots of ROOK!  I'll let her tell you more of our adventures.  I, for one, am anxiously looking forward to this year to get Tara's strength back.  We met some fellow glioblastoma friends today while we were at St. Joe's, Rick & Cindy Oehme and that was definitely a highlight for us.  He is so positive and it is always so nice to meet others who travel a similar path we travel.  Cindy is wonderful also and we actually had more than 5 minutes to talk.  Rick's motto is to make the most of every day, and I told them Tara's was "Come What May and Love it" - they liked that motto pretty well!    Why do the nicest people get glioblastomas???  Please pray for a cure.

Love you all - we'll write more later.