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!!



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 or 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