5 more weeks

Becky again...

Tara is on antibiotics again - I don't even remember which kind this time.  But, we are back to the antibiotics making her sick all the time.  It isn't going to be easy to get through these next weeks.  Tara really does feel pretty sick when she takes them.  So, she's trying to get through the forced "facelift" of the entire head being opened up again and then stretched; as well as the sick feeling from antibiotics.  I saw the shipment of antibiotics at my doorstep again and just about cried right then and there.  My stomach gets this sick feeling again and that medicine just about resembles poison to me.  I'm sure it's even more poisonous to Tara.  I just hope and pray they work; and her body will be able to return to some semblance of normal and be able to fight off her own infections after all this forced help.  So, when you all pray; please pray specifically that Tara will be able to EAT, and that she will be able to endure these weeks and regain some strength at some point.  No food sounds good to her - we're just happy if it doesn't BAD.  She's tired of resting and not feeling good.  Chemo is going to be put off again; but that's ok with me - she's so sick already she just can't handle anything else while she's fighting this infection.

We are going to Lake Powell and Tara is trying to make the best of a trip to Powell when she can't even really get in the water.... she made me promise not to cancel it and knowing Tara, she will enjoy the things she CAN do; and not mope about the things she can't.  Maybe I'm the only "moper" around.  She has that port accessed sticking out of her chest again, and she will also have stitches in her head as well; so no water for Tara.  I guess she can wade.... and hopefully get some splashes on her while she rides a jet ski....

We're enjoying a visit from Scott's parents - they wanted to come see Tara... and Tara also loved having her friend from college days here after the surgery; so it's been good to have some diversions.

Thanks for your specific prayers; we wouldn't get through this pathway without our army praying for us!  I was talking to someone today and realized how blessed we are - I needed that today because I've been negative about having to take antibiotics again.  As I explained the tumor, I realized again how blessed we are that Tara has all of herself working, (even though she's weak) and the tumor didn't have fingers spreading around - she had a great surgery; which helps.  So, there are always those miracles I have to remember when I feel a little picked on (or rather, I feel like Tara's picked on..)  We just have to gut through this hard time...

Good news!!

Guess what?
So Tara's infection is in fact not MRSA but it is staff!! YES! And the doctor said staff responds well to anti-biotics which means... it can kill it!
aaand... don't you worry, there is more good news!
The doctor is not going to make Tara take Vancomycin!!! He said he wants to put her on something that is easier on her and doesn't make her feel as crappy.
So tonight and tomorrow morning they are going to put her on different anti-biotics and if she responds well she can come home!!! Yay.

We love good news.
And thank you for all your prayers!!!

Party in room 6N-04!!

Hello blogishpere,

Rachel here. Tara asked me to blog for her so... here I am! Lucky - you guys get to listen to me ramble. But really, we have been here in this room siiince... Oh I don't even know. A long time. The days are all jumbling together. Yesterday Ryan, Steph, Brig, and Cami came and visted her. They played Rook and kept her company. Even though Tara just had brain surgery, she and Ryan smoked Mom and Steph in a game of Rook. Skills.

Last night I got to stay with her. It was definitely my first time staying over night in a hospital room and not being the one hooked up to IV's. But, the hospital does have decent couches... so that's nice. So Tara and I watched Project Runway until about 10:30 and then she decided it was bedtime... I decided it was bedtime at like 9:00 o'clock - I was so tired... but I stayed awake with her and we had a grand ol' time eating nasty hospital food and watching Project Runway. But she seemed okay last night, she had pain and her nurse wasn't super great at giving pain meds to her. So that wasn't very nice... but tonight will be her last night in the hospital!! So, hallelujah!

Oh and here is an update of the happenings of the hospital.

• The plastic surgeon ended up cutting open the whole scar instead of just the little 2 inch seam that wasn't closing... That was unexpected but he said he just wanted the whole thing to close up nicely. He also shaved some of the bone to make it better...
• They found some infection in there... it may be either Staff or MRSA. We really really reallllly don't want it to be MRSA. But regardless she has to go back on Vancomycin. And that is no fun. No fun at all.

That's pretty much it I think... I haven't been there today, so I don't know if anything new has gone down.

Tara seems to be good, Dad is finally home so she is a happy girl! Keep the prayers! And especially pray that her infection is not MRSA!!!
Tara loves you guys...


ps, here is a close up of her head....
At least they are stiches and not staples right??!
Right.

Finished

Becky here..

We are finished with brain surgery #5. Tara is now in her own room recovering. The plastic surgeon did a good job on her horseshoe on her head. He cut away the purple, scabby skin, pulled her skull free from the bone for awhile, and re-did her entire opening; not just an inch or two. It does look like it will heal this time - we will pray hard that this time her head does in fact HEAL. I was surprised to see such a large incision again - which in my mind, equals PAIN. It's hard to watch her lie on this bed again; but I know this too shall pass. She's on regular intervals on morphine right now; and I will make sure the nurse never is late on the dosage! She woke up in quite a bit of pain; but we had a good nurse in recovery that was quick to distribute the pain meds. Dr. Jo (nickname for plastic surgeon) shaved around on the bone some - said it was protruding in some places; so now it's shaved nice and clean and won't irritate the incision anymore. He also removed 2 metal plates and 4 screws, so now there's only 2 or 3 small titanium plates in her head. I think her head actually will look better now instead of worse; although she did lose some hair around the incision area; but she doesn't really care about that anymore. It's tough for her to rest well after these surgeries because she can't move her head at all without it bothering her. But, they'll keep her pretty doped up for the first 24 hours so that helps alot. My grateful list for today:

NO catheters are coming out of Tara's head
There are no signs of infection; they are culturing some samples now to double check
She still has her bone and now it's all smooth underneath her scalp

We had a very smooth ER process - smoothest ever. I prayed specifically this morning that things would go smoothly in the ER and it was an amazingly quick, smooth, relatively pleasant ER experience. We got into a nice comfy room within the hour - no moaning people next to us and our own private room where Rachel & Tara happily watched MasterChef together on the bed. No Nazi nurses to kick me and my projects out of the room, either. I feel like this was a direct "tender mercy" of the Lord, letting me know that HE knows we're here today.

That's my grateful list. It's hard to watch her in pain again... that's the worst part. We're starting to recognize nurses, residents, admitting people, etc. We're starting to put names with the residents .... one of the residents today wasn't sure he liked my nickname for him "Dr. Staple Gun" - we quickly memorized his real name instead. Another was the resident we talked into letting us out of the ER a few weeks ago so Tara & Josh wouldn't spend their anniversary in the hospital. I reminded him that Dr. Smith said it was the right decision to go home instead of lie around in the hospital waiting for an MRI when one was scheduled in 2 days anyway!! A nurse just this hour said she thought she recognized us - Tara has a very distinctive appearance - beautiful brown eyes, cute short hair, and a large horseshoe on the right side of her head. Hard to miss Tara - she sticks out in so many wonderful ways! Her pleasant personality endears her to all in the hospital. Plus, we have been here on a regular basis this year - surgeries in Feb, March, April, and June with ER rooms visits inbetween. I feel like we're going to move on now and just finish treatment and stay out of the hospital. I think Dr. Smith will likely say Tara can't have chemo in July; but we'll see. Tara will want it; crazy girl. I love her so much it hurts... we will get through this yet again. Thanks for your prayers. You are all the BEST!

Here she goes again - #5

Becky here....

Unbelievable but true, Tara goes in the ER again in the morning for surgery. She just started to feel better!! AAUUUGGHH! We had our regular Tuesdsay date with Dr. Smith; he saw Tara's persistent scab on her head - it falls off, sticky stuff comes out of her head again, and it is created again, and the cycle keeps repeating itself. Dr. Smith saw a small hole again and didn't like it. He has been trying to avoid a large surgery to repair the head - usually the skin will heal and grow together; but Tara's skin has been so hammered with radiation, medicine, and surgeries, that it just can't heal in that spot like it should. So, he's calling in the plastic surgeon this time and Tara will get skin stretched somehow around her skull to cover the bad spot and get it to heal. He will also "drill" into her bone "a little" which I don't much like the sound of, either. Those words equate to my mother's mind, PAIN. On the bright side, we hope and pray this is a lasting fix to the annoying leakage of Tara's head. I also hope and pray she doesn't have to resume any of those dreaded antibiotics again. He doesn't seem to think there's infection, just skin healing issues, so that's a good thing. But, he did say, the bone is probably "irritated" so I'm not sure what that will entail. I am thinking she might have a "funky haircut" again and her hair was just starting to look so cute; but once again, positive Tara says that "hair doesn't matter."

So, as I stared across the little exam room into my daughter's beautiful, brave, brown eyes, and looked at her cute, dark brown, short hair and perfect face, I just lost it again - took my brave break. Thankfully, Dr. Smith was out calling his plastic surgeon friend. Tara let me cry in her arms and smiled at me and told me it was okay to cry. She again reassured me. She also said something pretty insightful - she said this was easier than having a child go through spiritual pain again and again... which is likely very true.

So, off we go to the ER again in the morning. I dislike being a regular there; but that's the best way for us to get surgery the day we want it. We'll try to sneak Rachel in; as well as Josh and myself - hopefully the Nazi nurse is not on duty - she's usually on at night; so we should be good to go. Scott is away on business, and this is killing him not to be here; but Tara reassured him he should stay and she'll be fine. Dr. Smith said the pain shouldn't be too bad; so I'm banking on that - I think it won't be as bad as the tubes in February, but not as good as the one in April - I think this one will rate somewhere in the middle of the spectrum on the pain scale. So, it's party in the ER tomorrow. I'll try to update you all after the procedure - I'm sure it will be fine...

As always, thanks for your love and prayers....we still need them!

A Day off with more to do than sit on the couch!!

Today I am not going to work! Great right?? Just wait...the greatest part about the day off is that today I am not going to sit on the couch all day!!!! I am going to kiss that silly couch goodbye and make it today without a nap. Today I feel better. Today all I want to do is run through sprinklers and dance without any pain or hesitation. I hesitate so much. I never used to be careful about getting into the car. I could slam my head and it would not matter...now everything I do is done after the thought of what it could do to my head. I want to do a cartwheel and not worry about how my head will feel after. I know that day will come. It is feeling closer every day. I am closer to the old Tara. The more I think about wanting to be the old Tara though, the more okay I am with the new Tara. Ya, the new Tara is not physically fit anymore and can't run up flights of stairs but the new Tara is okay too. I am starting to learn to love the new Tara.

Today I hope to look at a few cars with my new foster brother Jerod...I need to have a whole post about him later... and maybe play with my boy brig who is growing up way too fast. Today maybe I could make some homemade bread, brownies, cookies, etc! :) Laundry, dishes...all this seems to excite me! Anything but stay on that couch! Today I want to be normal! Today more than ever this month I feel like I can be normal. So here's to normal, to running and playing, laughing and falling, learning and tons of hugs! Today is going to be a great day!

Momma,

You can't take this away. God could not take it away from Christ. It was something he had to endure. I could not do this without you. We are going to look back at all we have learned from this and hopefully learn to be grateful. I can't take the heartache it causes you away either. All we can continue to do is continue to help bear one anothers burdens. I can stop being such a stubborn piece of work but sometimes it makes me smile to see how worked up you get about silly things...wrong I know but I giggle inside. I just have to tease you...part of me being the best daughter I can be. I love you moms...I always will. I don't mind the pain so don't feel bad. I don't mind it as long as I have you, josh, my family, friends, and supporters there to help me. I can do anything with God and love. It hurts less because of love. You can't take this away but I can promise you that you are helping in immeasurable ways. I love life. I love love. I love you. I love.

Tara

Why can't it be me?

Becky here...

Today I had a brave break, meltdown or whatever we want to call it. As I saw my daughter so sick from chemo I just thought "life isn't fair." Here I am, playing walleyball, cleaning, shopping, with enough energy to do whatever I want; and Tara is so tired and so sick to her stomach. I had one of those "life isn't fair" moments. I really don't usually complain, and I know there are lots of trials out there that are really tough; but today; I just wanted it to go away and have my daughter back - the one before chemo. Tara reminded me I STILL have my daughter and she once again lifted me up and put a smile back on my face. I haven't heard her complain; only me. So, I thought to myself, "why is it me that feels so good while Tara feels so bad?" I would switch if I could; I would take it away if I could; but I can't do either. It's moments like these that I really have to pray hard and lean on the Saviour just a little more heavily. I just can't understand the whys; so I'll just have to keep plugging on the "faith train" (as a friend calls it). I'm glad I feel good; don't get me wrong; but I would trade if I could have Tara feel good and me be sick.

I have to remind myself, only 4 more rounds of chemo - 4 more months - that's less months than is on one hand!!! Tara said "6 more months" - but me and Dr. Shapiro and Josh probably will VETO that idea. I am so very glad Tara has Josh - as she said on our camping trip, "Josh is my happiness."

ER Room #6

It's pretty sad when I have to stop and think REALLY hard to figure out how many times we've been in the ER in the past 12 months... I think it's 6! I never thought I would be one of those people who have the ER "figured out" - a "regular." Pathetic! We were the family who had stale doctor's records that were so many years old that the doctors would not have recognized us had we not been family friends with them.

5:30 Saturday evening Tara calls in a panic( i was most definently not in a panic I was just trying to let you know we were leaving and had to speak louder than your happy anniversary song) because she's "seizing again" so we headed straight to the ER room - because now we know what to do. She had a seizure last November and I was REALLY looking forward to this November because it would've been Tara's one year mark without a seizure so then possibly she could get OFF the anti-seizure meds (The doctors never told her this...this was just dreaming...I know I will be on them for a long while), but oh well... anyway, Tara took 5 dilantin pills when the seizure started; which was probably good. Her arm was freaking out again; but her leg and her face also went numb somewhat. This lasted about 45 minutes, on and off, and then she (thankfully) completely recovered all her functions after that. But, because she HAD a seizure; she was pumped full of anti seizure meds in the ER room; which left her drunk and dizzy feeling until today. I had to talk pretty hard to get the Dr. Smith's resident to NOT admit her to the hospital - he had already decided to admit her to "watch her" and get an MRI; but after explaining it was her anniversary the next day AND she was already scheduled for an MRI + 3 doctors all on Tuesday; AND I reassured him we are seeing Dr. Smith almost on a weekly basis; he let us go home; saying he didn't want to ruin our weekend. Thank heavens! Josh was very awesome and planned a fun weekend for their one year anniversary; and thankfully did most of their celebrating on Friday and Saturday before the seizure. Tara even felt good on Friday and Saturday; which was a blessing. She had been so tired and plagued with headaches the week before that. Anyway, we were in and out of the ER in less than 7 hours which HAS to be a record for us! Tara walked in the ER faking (not faking...just dramatizing...I was in fact seizing) her arm shaking (so we could get seen faster) and then it REALLY started having a seizure again, so no faking was needed. We got a CT scan pretty quickly; and then finally finished the whole process by midnight. I spotted the Nazi Nurse again, and hid from her so we could all get in the ER room together. We had a "nice nurse" - a 20 something male nurse. We complimented him on how nice he was; and how great it was we could all be in the room together - how could he kick us out after that? So, Josh, Scott, Tara, and myself had our Saturday night date in the ER.

Sunday Tara was determined to go to church because Josh was speaking in church. She couldn't walk in or out of the meeting without assistance; so everyone was very worried about her. So - to all of you worried people, keep praying, but really, Tara was just "drunk" from all the meds. It was a heroic effort for her to get to church.

So, on to the GOOD NEWS. Today was MRI day, and we saw 3 doctors who all independently saw the MRI and all told us that it was a good scan - NO CHANGE. Nice, nice words! They didn't think there was fluid to worry about that the resident mentioned in the ER room. Just goes to show the residents really don't know as much as the docs. Dr. Shapiro explained why the resident thought there was fluid, but showed us why it wasn't a big deal. Tara decided (they all agree with me!!! Shapiro says I am cute every time we go in there) she was the "favorite patient" of all 3 doctors, ha! She and Dr. Smith are becoming a weekly date... he actually said we could wait 2 weeks to see him this time.. it was awesome to meet with Dr. Brachman again. He is the best at explaining things and really taking time to help. He addressed Tara's tiredness issues and we have some ideas to help with that.( He told me to drink a Coke... mom did not like that answer!!!) He said she really shouldn't get as much sleep as she's getting and we need to address that; so that was good to hear that from him.

We really don't know why Tara was having headaches last week - could be residual Temodar, could be healing and stretching from the healing of her head, or she could be just having headaches like a normal person. Heaven only knows. She starts Temodar tonight (chemo) so this could be a tired, rough week; but it brings us one round closer to finishing. Finish date is OCTOBER 4th. That is the date of the last round of Temodar; but of course, Tara, crazy woman (I am completely sane and just want to increase the likelyhood of an increased life expectancy!), wants more chemo - she wants to keep going til Christmas; so Dr. Shapiro will decide. I am taking the faith approach and I'm assuming that tumor is GONE (Josh says so too) and she should just finish chemo and move on with her life...but sometimes Tara gets scared. I try to tell myself that I'm not scared; and the majority of the time I am not. I felt very peaceful today during the MRI - I felt peaceful after my prayers this morning when I specifically prayed for peace...we are so blessed and the Lord is with us, I know that, He carries us when we can't carry ourselves. I hate to see my daughter drugged up and not herself; but I am happy the MRI was clean and we will move forward and things will be better tomorrow. She may actually make it to work tomorrow - we'll see! She is a trooper and was still smiling in the ER room Saturday and wasn't mad, sad, discouraged, or depressed, at least that I could see.( I got free graham crackers...how could I not be and they were the Honey Maid kind...not the gross Walmart brand)

waiting in the office

We have never had to really wait for the doctor but today we have been sitting here for an hour. I decided to see if I could blog on a phone. Man, I miss my keyboard. My thoughts just fly so much faster than my fingers and my poor phone has no chance of keeping up with me and my crazy mind. Headaches keep happening but mom thinks it is because I don't eat enough...hopefully she is right! They keep calling names - every other doctor but Smith... That means Smith is stuck with someone... I just want to get this over with... I am nervous for my MRI because if my headaches and nerves are doing this because... Surprise surprise... My head has a hole in it and it is leaking... Ahhhh I am so ready for my head to just heal!!!

It is sad to see all the people in here. There are way too many people who need to see a nuero surgeon... Some have spine issues and wear neck braces while others have scars that match mine... I feel for them. Hopefully their heads can heal. Little kids are not supposed to be in here... They just look so innocent. Ah it kills me to see them in here. Men with patches over their eyes. I don't really like this office...


Well I made it out alive and with decent news and now I am waiting to go into my favorite place...the infusion center!!! Where there is free food, comfy chairs, and happy people. It does not smell like hospital food and they never deliver bad news here! I am here so they can flush my port and take some blood. This way I can avoid home health nurses!!!

So Smith said that things were not looking too bad but he had hoped I would have healed more. I don't have any stitches anymore...only took a month and a half to get them out!!!! I will get to see him again next week along with Shapiro, the MRI machine and Brachtman. ..Who, Terri agrees, looks like Wilson off house...looks like it will be a long day next week. Smith said that tumors do not cause headaches until they get huge and I just had an MRI in April so he is not too worried...music to my ears. Looks like no surgeries for me!! Lets see if we can go two months in a row!! Life is great!!! It is so much easier to breathe knowing that my headaches are not because of the tumor coming back. Well, nurse is here!!

Tara B.

I am more than cancer

Well I have not written in a while. Things have been fairly uneventful which is a good thing in the cancer world. I am still healing from the surgery in April. My scabs keep coming and then falling off and then new ones appear. Don’t know if this is good or bad…we will find out tomorrow. I still have some stiches in from the April surgery and I am convinced that I hold a record for longest time with non-disposable stiches in head. It has been a month and a half or something ridiculous like that! I am unbelievably tired most of the time but I am still able to do important things like shopping and such! My body size keeps changing like crazy so I never get pants or shorts but it is still fun to look! Last summer I froze every day…not so much this summer. I have actually sweated already! Big thing for me. Being cold in Arizona during the summer has serious advantages but when you are shivering outside in an Arizona summer…you start to get really really odd looks. No shivering thus far. I don’t know when chemo will be again but I do know that I will never have to take it with those evil antibiotics again. Many of you may know of Stephanie Neilson. If not, you really should get to know her story. She is incredibly inspiring. She was in a near fatal plane crash and burned 80% of her body. I will attach her blog site so you can visit it if you would like. She has been on Oprah and has a very popular blog. She lives in Utah but has been recognized by Arizona newspapers as well. Yesterday I watched part of her movie and she said something that really hit me. She said, "I am Stephanie and I am not my body”. She may not look the same and be able to do the same things she was able to before but she still knows who she is. I feel like sometimes Cancer has become who I am. Sometimes I feel like it is my life. Yesterday she helped me remember that just because my body has cancer, doesn’t mean I do. I am so much more than the young girl who has cancer. My body has cancer…or should I say HAD!!! (positive thinking) I am Tara and cancer cannot define me.


http://nieniedialogues.blogspot.com/

She's off antibiotics!

Happy days!

Thursday was Tara's last dose of antibiotics! Now her stomach can attempt to return to something resembling normal, I hope. She has lost a few more pounds; and I'd like to see some of that weight return to her. So very many foods just don't sound good to her anymore. Many times we have to just give up on eating healthy and just find something that will go down! Last week it was Little Caesar's pizza - twice! Go figure. Yucky Little Caesar's hit her spot... she's off Mexican, Thai, and back to bland basics; except for that pizza. Travis has been home for 3 weeks, and one day his "assignment" was to take Tara some lunch and get her to eat. So, he brought Little Caesar's; and it meant so much to Tara just that he would come over to her house and "have lunch". He also accompanied us to a doctor day; so that was great also.

We escaped last weekend to the mountains near Payson for a 2 1/2 day camping trip. We had decided not to go; but all Tara has to do is flash her smile and her beautiful brown eyes at her Dad, and off we go camping. Scott had a few hours on Friday to prepare for camping, and couldn't resist Tara. Anything to make his daughter smile. So, all 10 of us hung out in the mountains, did pretty much nothing strenuous, played lots of ROOK, ate lots of Dutch Oven cooking (Tara actually had 2 bowls of dutch oven stew!!!)and tried to enjoy sleeping in tents. We went to a small branch of our church that Sunday; and that was a neat experience also. It was just great to have all of us together for a few days without any distractions from technology!

Tara has actually worked 2 days in a row! That has to be a record - she hasn't done that since February 13th, so I'm thinking that's a good sign. She does still need naps during the day at work - but that's to be expected! Her head did leak AGAIN on Friday; but I'm hoping it's just because the scab finally broke off and therein resulted in some leakage. We weren't too thrilled to see that again. We are so looking forward to going to Lake Powell on July 22nd, and Tara needs to be able to GET IN THE WATER. Hopefully 6 weeks is enough time to heal. Whoever thought it would take 4 months for this infection to heal??? Crazy. We just never know what is around the corner. We just keep living a day at a time. I am hoping Tara will start to feel good enough to do the healthy eating again, and get some supplements down her that will help build her body up again. Chemo starts June 14th again, provided all is well. I don't even know anymore how many rounds of chemo she has left. My guess is she'll finish around November.

We made it through all the painful memories of last year, May 14th, May 28th, the pathology report day, now the good memories are coming - the wedding on June 12th. The fairytale reception all our friends put on for Tara & Josh.

Hopefully Tara will be back to blogging again herself soon - - I think sometimes she just gets sick of thinking about her "cancer" and wants to be normal and forget about it all and doesn't blog.

Thank you all for your continued support! Love you all!

Becky

PS - It's time for me to wrap up the quilt raffle - so if you want some tickets; please email me in the next 2 days.... and I can put you down for some tickets. beckyschlappi@cox.net or you can send me a message on facebook.

Procrastination

I have been sitting here for about 15 minutes trying to put off taking my medicine. CLINDAMYCIN= evil drug that I despise. I take it three times a day and I get rather sick three times a day. I am supposed to take it at 2 today and it is 2:20...think I am doing a pretty good job at this procrastination! :) Last week I took my temodar and the evil drug and a few times thought I was going to die. I still look like a zombie sometimes when I walk and woke up with a panic attach the other night at about 3:40 AM. I hate hate hate this drug but can't seem to tell the doctors this. I go to the office and pretend I am superwoman again. Oh, it is not too bad I say. They think I can do anything!:) I don't tell them all the way how I feel because I want the medicine. I want this stuff because the sicker it makes me, the healthier it makes me. I have completed one more round of chemo and have more than half the rounds done! I just do not like this stuff and I am going to sit here and complain all I want to! Just counted...7 more pills to take! That is 2 more today and 3 tomorrow which leaves me with... only half a day the next day! Okay, enough complaining.

Really as an update on me.

I have lost a bit more weight due to taste issues and obviously have had a few issues with my meds. I think my rash is finally going away along with the bruises I gave myself from itching so much. Everything looks like it is going to be uphill.

My hair continues to thicken and grow in length! Dr. Smith took out two more stitches today and I think I have two left! It has been a month since my last surgery and May is looking like it could be a surgery free month!!!

Jan.= ER with breathing problems
Feb. 15 = surgery #2
March 25 = surgery #3
April 25 = surgery #4
May 24= SURGERY FREE!!!

I hope to continue this trend. I really hope the only other surgery I ever have to have is to take this port out of my chest. 6 sounds like a good total number to me.

Okay it is about 2:32 and I really need to take that little bugger...wish me luck

One Year Later

One year ago I had no idea...

What glioblastoma is...now I know there is a cool nickname for it too!!! GBM
What radiation is
That not all chemotherapies killed your hair
What acid reflex is
How fast word gets around a loving community
What sugar/white flour does to your body
That I could be this tired
How many years brain surgeons go to school
How quickly my life could change
How grateful I am for the gospel and the essential role it plays in my life
The fastest way to drop ten pounds is have brain surgery
Flying in planes may seem crazy right after a surgery but it happens all the time
Nurses have 12 hour shifts
Having a seizure gets you right into the ER while a hole in your head the size of your index finger gets you an hour wait.
How long my hair was
How much Josh loved me
I actually looked okay in hats/bald/balding/every other odd state my hair has been and currently is in.
Dr. Shapiro takes time to warm up to you
What “brain games” are
It is possible to be freezing cold in the middle of an AZ summer
What a port is and how amazing they are
That I had that much blood in me
Where Sonora Quests were all over the valley
My body could possibly itch this much
I am allergic to keppra and another random antibiotic
If you rub your big toe...it helps with your headaches
You can’t take Advil while on chemo
What a medical “trial” is
Your hair growing and fingernails is a sign that your body is doing okay
How wonderful the words “no growth” sound
How badly I want future children
How many times we would move
I would marry my Joshua
How amazing my Father in Heaven is

Okay I really could go on and on but I am getting bored so let me just say that I have practically been through nursing school because I ask the nurses so many questions and may have possibly completed a whole semester of residency if you count all the hours I have spent with doctors. I know all the good eating places by St. Joes and could maybe get there with my eyes closed. I have had more tender mercies of the Lord and have felt him near more this year than any other year of my life. I know that my Heavenly Father Loves me and will never leave my comfortless. I have been blessed endlessly and I am so grateful for everything.

I may not have been able to go to school for the past year but I have learned more I think in this year of experience than I could have ever learned in two semesters of school.

Most people live an average of 12 months with a GBM. AVERAGE!!!! People....I am just over 12 months and I am thinking that I am not average! There is no way this silly little tumor thing is going to get in the way of my life.

Everyday I think about what I did the year before...in just a few days I will have surgery and then we will have the results that seriously shook us all. I will try not to dwell on it too much and have it consume my life and every thought but it is hard. Kicking cancers trash has become part of who I am...

I am a daughter of God who is kicking cancers trash!!!

One year later....

I haven't been able to get this off my mind all week - yesterday was one year ago that we started this brain tumor pathway. One year ago yesterday, Tara and I stood in EVDI, shaking and crying together as we learned of the tumor. Trying so hard to be brave as I heard the news from Dr. Shockey, but giving up, and hugging Tara and just crying with her. We were both so scared.

I have lived through things I never thought I could live through.... things like the pathology report, the initial CT scan, shaving Tara's head, and family members breaking down at different times (including myself!)

I have learned I can't write the script on life, I have to live by Tara's motto "come what may and love it." (although she does a better job of that than I do)

I have learned it's really okay to cry, it's okay to lean on others and let them help. Some days I had to get through hour by hour...

I have witnessed Tara's amazing courage and positive attitude as she faces this. Rarely do I see her break down.

I have memories of the fairy tale wedding reception (thanks to friends & ward family) and memories of Tara being in white in the temple, special moments the 2 of us had together before the wedding itself. The wedding got Tara through some very tough times..... it was a huge wonderful event to look forward to!

I have loved watching Tara & Josh be so happy and in love.

I have loved spending time with Tara - even though I would prefer not to have Tara have a brain tumor; I enjoy all the moments we have in the car driving back and forth to Barrows. We've had some pretty good talks about so many different things. Tara has become a friend, not just a daughter. It's been a wonderful transformation. Sometimes we run around together acting just like 2 married women doing our errands together. We've had plenty of times together when Tara doesn't feel good; but we've also had many times that are happy, also -

I have loved all the people who have helped us through this trial. So very many people who have prayed and prayed and loved us through this. I've said this before, but you have carried us on your shoulders.I feel the Lord's love through people.I also feel it in the temple, which has become one of my lifelines.

I remember Scott endlessly taking on the job of Tara and her care the first month - getting us into the right hands - making all those calls I don't know if I could have made - Scott & I took turns crying and breaking down - but we rarely both broke down at the same time, so we could help each other through our tough moments.

I remember family rallying around - family near and far - so many thoughtful cards and gifts, letters and emails from family and friends both....

I have learned to treasure the moments.  I really do treasure the moments.  I have learned that it is possible to survive seemingly unsurvivable moments.  There are some moments I don't treasure; but I try to reflect on the pleasant moments.  I have grown from the hard moments.  Would I choose to grow this way?  Definitely NOT.  I think what gets me through each day is HOPE.  Hope that tomorrow will be better, right now it's hope that Tara's side effects won't be permanent and she will be better at some point.  My hope turns to prayer...I do keep trying whatever I can to help her (when she'll let me help her, that is).  We have a plaque in our front hall that says, "where hope grows, miracles blossom."  That came from someone last year at about this time...

I think of people who don't even know Tara doing incredibly nice things for her, a homemade afghan, quilt,  pretty earrings in the mail, just to name a few.  I can't even begin to mention the kind acts done in Tara's behalf from all the people who DO know her!  She was completely and totally spoiled at her wedding and bridal shower.  Such generousity I have not witnessed before!  Generousity in gifts, not only presents, but gifts of time also.  Gifts of prayer - I really do feel the power of combined prayers.  Prayers help me remember that Tara is NOT a statistic - she is Tara - and miracles can and will happen - and have happened!

In 2011, Tara should finish treatment - we'll find out this week when Tara starts again. Finishing treatment means Tara can start feeling better again. I have my perpetual hope that her feet will stop burning, her stomach will stop hurting, and she won't have permanent side effects from these medicines being poured into her body. She has started to get some of her energy back these 2 months she's been off of chemo. I can see that someday when she's finished; she could return to a "normal" life again.... except I don't think we'll ever return to the normal we were before the brain tumor.

Now for the newsy update...

Tara is officially "off" the clinical trial. She didn't have an infusion within 8 weeks, so they can't monitor her anymore. I'm okay with it, but Tara & Scott are struggling. I have that "hope" I referred to before that keeps springing up. Maybe I have some "blind faith" but I believe if Tara HAD to have that drug, she would get it. If her tumor recurs (we all pray that never happens) she'll still get the medicine for free at that point - so the clinical trial was not in vain - and it may have helped these past months as well.

We see Dr. Shapiro Tuesday, as well as Dr. Smith. Stitches will finally be removed, and then one more week of antibiotics then Tara can get OFF OF THEM. 3 + months is too long to be on those heavy duty drugs in my humble opinion (or not so humble). The doctors will decide when chemo starts again. Tara says she's ready to start again; but I'm not so sure - her stomach bugs her so much and I hate to have another thing bugging her stomach. Tara really wants the chemo - she wants something in her body fighting the tumor. I think it's like a security blanket with her. I want it only because the sooner we have it, the sooner Tara finishes treatment. My guess is treatment will now finish in November. This surgeon that we weren't supposed to get to know - he was just "assigned" to the case, we are getting to know pretty well.... he is actually very wonderful and really wants to take good care of Tara. I am trying to do whatever homeopathic things Tara will let me try to combat the toxins in her body.... Tara did say yesterday that "she's ready to be a brain cancer patient again" It's been a year and she's ready to eat healthy and fight the fight some more. Tara will never be "normal" - no matter what happens, she's heads and tails above "normal". She is our hero and Josh's queen!

Finally Blogging Again...Port happiness/Laguna/17 layer cake/other randomness that has come to me while writing

** I just added pictures...well I did not add them but I am stealing them from Chol and the link is at the very bottom. I guess people like pictures...don't blame them...we are georgeous! :) Just kidding.

Okay yes I have been bad…very bad…at writing on the blog. I am sorry. As a recap… surgery went well and these blessed blue stiches are itching more than ever which I guess is a good sign of healing. I still have my stiches and get them out next Tuesday. I have not been picking at my scab or stiches which may not seem like a big deal but it is for me. I am a major picker and for me to keep my hands off has been huge. I think one reason I have been able to keep my hands off my head is because they have had free range to itch my back, legs, arms, neck and stomach. Last week I developed a wonderful rash. I now have a new med that I am allergic to!!! My antibiotics. I have kept my hands off my head but have apparently itched so much and so hard that I have kept Josh awake all night have now have wonderful blue bruises on my legs from bruising…. At least my head is healing! So I have a new oral antibiotic that I will take three times a day for 14 days. Ahh!!!! There is an end. The doctor is only making me do these to make sure it is gone. My cultures came back really well and showed “no growth” but they want to double make sure so I have nice light blue pills to keep me company wherever I go. Anything is better than that ball I had to carry around with me! The best part about yesterday is that I got the needle out of my chest!!!!! MY PORT IS OFFICALLY DEACTIVATED!!!!!!!! I still have my port…it was surgically placed and will have to be surgically removed but I do not have that friendly 1.5 inch needle in my chest! I am a free woman! I have not really showered since…well…FEBRURARY 15!!! That is a really really long time. I cannot even describe how happy I am to take a shower tonight. I am supposed to wait 24 hours from when I am de-accesed…that will be at about 3:00 TODAY! I don’t have a cord hanging out of my shirt or getting stuck in my clothes. I will not have to stick a rubber band around my neck and then clip it to the port to take a shower (half choking). I will not have a funny sticker with a date stuck to my chest for people to wonder about and I will not have to accidentally run into something and then pay for it the next few hours. The doctors said there was no way I could hurt the port…they obviously don’t know me very well! So that is the best news of the week!


Girl’s trip to Laguna was AMAZING and so relaxing. I could not go in the water but I still managed to have a great time and get a little sun. I have just decided to give up on the whole being tan thing. I am just going to be happy with me.

The trip was a little hard at times because I had to realize that I am not normal. I tried to be normal so hard. I ate sugary foods and I stayed up late. I laughed and even tried to run/ dance in the parking lot. That obviously was not a good decision and now I have some weird pain in my port. I think I stretched an artery or something important like that! I even tried to turn down medicine. I wanted to be like everyone else and not have to take 18,000 pills every day! That didn’t work so well with Dr. Mom and we had to have a nice little heart to heart about the situation. We decided that she has no idea how I feel and I have no idea how she feels. I am just glad that I have a crazy mother who loves me enough to try everything to save my life. She pesters the doctors with questions and reassurance and is willing to try just about anything to help me. Unfortunately, I am a “bad patient” as she calls me and am not so compliant with her meds as opposed to my oncologist or surgeon.

Anyway, back to the trip and the amazing part of it. Mom gave us a portion of money to go shopping with thinking that with that money we would get a complete outfit! Mom…I got like…12! Leave it to the Schlappi’s to have $100 and come out with a pair of gap pants, 9 shirts, 1 jacket, a pack of socks, and four zippers! Now that is a bargain! How I did it??? I still don’t know…the fashion district of LA helped… 1 shirt, 1 jacket, and four zippers cost me 6 dollars there! Okay, enough bragging! :)

I meet with a homeopathic oncologist tomorrow and another doctor but I can’t remember which one…I just know I have two. Anyway, we will see what he has to say about that whole thing. I am doing as wonderful as possible I think. I look at other cancered patients and consider myself extremely lucky. The Lord will never leave me alone.

As an update on my feet. They still burn and sting and all those other wonderful things. At times the heels of my feet get really hot and now my fingertips feel like they have needles in them sometimes. Definitely not fun but hopefully not permanent. I am giving my poor feet “foot baths” and Dr. Mom has other remedies she is trying on them…when I let her. :)

SATURDAY IS MAY 14

Ahh that day will always be remembered. My mom says it has gone by so slow…I completely disagree…a whole year has passed! What if they had told me I only had a year??!!! You crazy lady! I am loving every bit of my itchy life and hope it continues on and on!

“through faith, this cancer may be rebuked” – Elder Cook

Faith meds first…then Dr. Meds.

Take that silly glioblastoma.

Also, if you want pictures of California and our 16 or 17 layered cake Chol blogged about them and I have attached the link. I think her first two recent ones are about them...the cake is actually pretty funny and Nate Dawg's volleyball game is thrown in a little as well.

enjoy...Chol is hilarious
http://rachelschlappi.blogspot.com/

Surgery number 4!

Hey all, Rachel here! I just got back to the 85205 on Saturday night and I could not be happier. Mesa Arizona has got to have the best weather on earth this time of year. But mostly this place has got the best people around. I am so excited to have a 4 month break from school, work, and party with my family all day every day. It's gonna be great!

But here is the update I know you all really want:
She just went under and is on her way into surgery now! We got to the ER at 6:30 this morning and she got taken away around 3:10... So we are all a little tired. But it has been quite a day! It's my first time being here in surgery with Tara. The 3 previous I have been in a completely different state. Her first big surgery I had to graduate from High School so the family went to San Fran without me. And then the last 2 I was stuck up in a place called Provo, Utah at the BYU. So I have been disappointed that I have been missing out on all the fun. If you can call it that... But I love being here for her. The hospital definitely isn't my most favorite place, but the nurses and everyone are so nice. My mom says the nurses are sometimes Nazi's but I don't believe her... I must be Tara's good luck charm :)

Of course Tara was all smiles and has had the greatest attitude all day. I do feel a little bad because I have been eating granola bars and goldfish in front of her while she has to starve before surgery.

They moved Tara to the old Pediatric room to give her more privacy. It was definitely better than sharing a room in the ER with some lady who was moaning in pain the whole time. It was so sad... I hate hearing people suffer. But in the pediatric room it was so bright and so happy!! There were giraffes on the walls and actual light. Me and T loved it.
We got cozy on the bed and watched a lot of Food Network... It doesn't take a lot to keep us happy!!

But now Dad, Mom, Josh, and I are sitting in the waiting room just... waiting. The doctors seem to all think that there is no infection because the wound isn't red and there isn't really a lot of puss coming out, but the hole in her head has gotten really big. It has grown from the size of a pencil tip, to where you could probably fit your pinky finger inside her head. You can see the skull too if you look closely. There are picture on my mom's camera, but sadly she forgot it.

Anyway, I really just want her head to heal. Thats all! Is that too much for a girl to ask? All I want is my sister back. And not at the hospital all the time. Then we can really party this summer :)

Well, thanks for all the prayers everyone. I know we all feel them and appreciate them greatly. Especially Tara. So thanks for everything you do.

She is not alone. She has the greatest family, and friends looking out and prayer for her. But most importantly she has her savior Jesus Christ who loves her and is here for her always.

Much Love,
Rachel Schlappi


Update number 2: She is out! Dr. Smith didn't see any infection on the bone. Yes! So he sealed up the wound pretty tight and scraped off any remaining infection he saw in the cracks of the titanium plates or something... But he said the infection is looking good. He said probably 3 more weeks of Vancomycin (the infection drug) and then she can finally start Chemo again. A downside is she will probably be taken off her Avaston trial which is supposed to stop a tumor from coming back, but then again she might have the placebo... So yeah. Surgery number 4 has come to a close. We aren't too happy about the fact that she can't start Chemo again very soon, but at least the bone isn't infected!!

Quilt Raffle; not Auction

After some consulting with various friends, I think it's best to "raffle" this quilt instead of "auction" it.  I will sell tickets in increments of $5.  You can buy as many as you would like.  I tried several times to create a "button" on the blog which would donate easily through PayPal; but was unsuccessful!  So, I know this is harder; but you can send a check or cash to me and I will put tickets in the raffle for you.  I think this will be the best way to raise the most funds for brain cancer research.  If you have a PayPal account; you can also send the funds easily to my email address beckyschlappi@cox.net via your email address. Just log in to your PayPal account, then click "send money" and they will show you how to do it.  I promise not to embezzle any funds, and I am donating the cost of the fabric and the quilting myself and not getting reimbursed.  Every single penny will go to the AOS Foundation to further brain cancer research.  Believe me, we need more treatments available to fight this glioblastoma!!!  You can also drop $ off to me here anytime - I will create a box in my entryway.  I will end the raffle on June 1st - so that gives you plenty of time to spread the word.  I will try to post better pictures soon - the previous pictures just don't do justice to the quilt!

Thanks for all your kind emails, prayers, and love being sent our way.  I have faith when Dr. Smith goes in on Monday; he will not have to remove the bone and Tara's body will be able to heal itself.... with all these prayers going in her behalf, it just HAS to happen!  I must admit I had to fight back tears in his office again. I can't cry when Tara is watching; and she continues to buoy me up with her positive attitude. She's the one going through this pain again, why is it so hard for me to accept?  She seems to accept it just fine...  We just have to manage the pain better this time around.  We won't leave the hospital within hours of the surgery; we'll make sure pain meds get down Tara and STAY DOWN before leaving!  I brought up the fact that I'm planning a trip with my daughters May 3 for 3 1/2 precious days and "please can you plan around that?"  Dr. Smith reassured me he would not get in the way of our girl's trip!  So, one week after surgery; we plan to leave town.  I hope Tara gets her strength back quickly!!

Love you all!  Happy ticket buying!

Becky

I guess three is not my lucky number...maybe four???

Dear Doctor Smith,

            Thank you for being a great surgeon but please for once can I go into your office without a) taking stitches out or b) telling me I need another surgery which will then lead me back to your office for suture removal? Can’t we just have a friendly...”wow Tara, your head is really looking great! Infection/cancer is completely gone and you can go back to normal now!!! Well done!”? Oh that would just be sweet music to my ears.

Yes I am going in for yet another surgery. I think this makes our total 4 thus far...yep four in under a year! May 28 was the first surgery and I was hoping to make it there without another invasion but life is still not fair and I still don’t get everything I want...someday!

Why am I having surgery?? My head just will not heal...mostly because my past medications have just about killed my body’s ability to heal. My body just isn’t as healthy as it once was. The first surgery was easy because I was med free but each one gets a little harder. The doc is going to re culture the infection to see if it has changed at all. He said it could be at the tip of the bone and if it is that would mean at least two more major surgeries. Right now we are begging for your specific prayers again. We need to pray that my body will heal and that the infection will leave. If it does not get better than I cannot have my chemotherapy and I really need to continue that treatment. The doctor plans on tighter stitches that will stay in longer. Unfortunately, I have to continue my vanc! This stuff is really nasty and is starting to have effects on more than just my stomach...my poor feet have become the next victim. We are trying to stop this possible foot damage stuff and are taking foot baths and all that fun stuff...homeopathic route.

Anyway, I guess the bottom line is I am having surgery again on Monday and we really need your prayers. My body can’t handle this much longer.

Thanks much,

Tara

Quilt Auction

This is Becky.  As many of you may already know, in the last 5 or 6 years I have taken up the hobby of quilting with some of my friends.  I enjoy this hobby quite a bit!  All my children have a quilt on their bed, and one for their wedding.  I have 2 or 3 quilts to rotate on my bed (depending on the season) and the ONLY other people who have received quilts other than my children are BLOOD relatives - such as a mother, or mother-in-law, and possibly a few table runners for sisters.  I am one of those quilters who only gives a quilt away if I can "visit" it - at one of my children's homes or mothers.  When I put so much time into a project such as a quilt, I like to see it and remember how much I love it!  I am not much of a humanitarian quilter - I'm a pretty selfish quilter, and most of my quilts aren't "quick quilts" - they are time consuming and more involved; so I keep them!  I have never considered selling a quilt because it just wouldn't be worth it - it costs quite a bit to buy the fabric and take it to my friend, Marae, who quilts the quilt together on her big machine in her living room.  Soooo, all this rambling is bringing me to my point - never before have I "sold" or given away a quilt to a non relative (except for Jamie Campbell who got a quilt because she doubled the food for Tara's wedding and didn't double the price!), BUT I am going to donate a quilt to a foundation that I have a particular interest in and sell it to the highest bidder.  That's where you all come in.  I will post a picture of this quilt and you can email me if you are interested in purchasing it and donating the $ to the following foundation:

Many of you have read about Terri Thomas.  She is Tara's "quarterback" as we affectionately call her. She can be reached anytime of the day or night by text, and has facilitated much of Tara's timely doctor care.  She is the one who can call the surgeon and get a response within the hour so Tara can go to Sea World, she's the one who sends us to the ER on a semi-regular basis - she tells us if it's serious enough to go to the ER or not.  She manages our doctor appointments, MRI's, treatments, etc.  She accompanies us to almost every doctor appointment and coordinates Tara's care.  Much to our chagrin, we found out the foundation she works for is seriously underfunded.  We mistakenly thought she was paid by a rich drug company. Alas, that is not the case.  She is the one who signed Tara up for the clinical trial (which, remember, would cost us $20K per infusion if we weren't on the trial) and manages all of it.  If there are new clinical trials out there for brain cancer; Terri would be the 1st to know about it.  So, here's the official "blurb" from the brochure about this fund raiser for this foundation:

The AOS (Arizona Oncology Services) Foundation Mission Statement is to more effectively combat cancer and improve the quality of life of cancer patients in the State of Arizona, by providing access to vital clinical research and education.  Foundation for Cancer Research and Education dba AOS Foundation is a not-for-profit organization that provides access to cancer clinical trials throughout the Phoenix area with an emphasis on the National Cancer Institute trials.

Since it's inception in 1989, the AOS Foundation has provided support for cancer patients and their families (I have cried with Terri many times, I know they provide support!).  AZ Oncology Services Foundation is one of the leading enrollers in radiation oncology research in the United States for the past 10 years.


Okay, so here's 2 ways to donate to this foundation if you are interested:  You can just send me the $ and I promise to not embezzle any of it and give it directly to Terri before the benefit golf tournament they are having on April 30th.  (or you can donate anytime after that also, and I will make sure it gets to the right person)  OR here's a website:  www.justgive.org  go to that website then search for AOS using the following:  Foundation for Cancer Research and Education, Arizona.


Here's the picture of the quilt - the dimensions are 56 x 84.

It's really hard to see how very cute this quilt is - you can't see the cute black and white polka dot fabric that is used, or the texture of the other fabrics.  Just trust me, it's really neat!  If you want to see it, I have it at my home.  It's called "Black & White & Stars all over".

Please email me at beckyschlappi@cox.net if you are interested in being the owner of this quilt!  I will end the auction on April 29th at 6:00 pm. If there is enough interest, I am considering doing a quilt of someone's choice for the foundation also.  We would have to work out the price depending on the quilt and fabrics chosen.... Love you all!!!

PS - Tara's head leaked again on Saturday night.  Please keep praying that the infection will be healed.  I am pretty sick of the vancomyacin and so is Tara.  I am about to the point to throw all the medications out the window, get Tara on good homeopathic vitamins, minerals, and supplements, and help her body heal itself.  This strong antibiotic doesn't seem to be working.  It's only hurting her stomach!  Apparently there is a shortage of "good blood vessels" up there on her poor radiated head!  Healing is taking a very long time.  We see Dr. Smith Tuesday and he makes the decision to start chemo again or not to start again.  I am guessing he will say "no chemo".  We're already 2 months behind; but the infection HAS to be gone before chemo starts again.  Wednesday is MRI - but I'm not scared because Dr. Smith just reassured us there in no tumor - but we will be curious to see if there is alot of fluid in there..... anyway, your specific prayers about this infection are appreciated!!!  LOVE YOU ALL!!

Moving/ Spring Cleaning

So my mom was not exaggerating when she said I had YEARS of things to go through. I had about 4 hours max to pack before my wedding and most of that was heavily medicated and hormonal so I was not very productive. It really did end up being a “throw everything in a box or bag” moment. We moved around so many times the first two months that we were married that I never had time to really…unpack! I unpacked what I needed and left the rest. The Gulbrandsen’s had plenty of room. So yesterday I guess I unpacked completely. I and went through everything I had…most of it not needed and that’s why it was still not unpacked. I think I could win an award for being the biggest pack rat…okay maybe not. I watched Hording…Buried Alive on TLC and I think it is what completely freaked me out. After watching that I ran up the stairs and started throwing things away! I am the t shirt queen and I decided that I really don’t need 80! I really only need a few! I kept maybe more than a few but hopefully less than 12…that’s a much better number. I got on a role and got rid of half my hoodies…all of which were pretty much given to me. I absolutely love hand me downs (infact my entire outfit today is comprised of them) but have a problem not keeping them all! I have only bought one hoodie and it was years ago (doesn’t fit) but when I first looked at it I thought I had to keep it because I remember how excited I was to get it. I spent my hard-earned money on that thing! I just about kept it until I remembered that I have about 100 pictures of me in it because I wore it about every day. After thinking back on the crazy hording show…I decided that the hoodie could keep another much smaller girl warm for a while. I did not need that hoodie. I seriously filled that back of my mom’s truck! Old dresses I never wore…shoes from DI that I never wore… jewelry that my mom gave me when I was 12…oh this one is good. So when I was about 12 or 13 my mom gave me a box with some of her old jewelry that was cool when she was 12 or 13…needless to say…I still have the box and the piano-shaped lip gloss and the Hawaiian necklace and the beaded pin necklace she made as well. There were ugly earing things and another very interesting necklace thingy…I don’t even know what to call it. The point is…none of this stuff meant anything to me. I asked my mom if she wanted it or if it meant anything to her and she threw it in the trash!!!!!!!! Ohhhhhh how could she??? I thought those things were like..really special or something. She then told me that they were really cool when she was 12 and she thought I would want them when I was 12. I am 21 now and have been carrying them around with me thinking that the empty lip gloss was special and it was trash. Pretty much most of the stuff I have been hauling around is trash. The good thing is…it has found its proper home now…IN THE TRASH CAN OR GOODWILL PILE!!! Ah it feels so good and I really don’t miss a single thing I gave away. I think some people put what I did into the “spring cleaning” category. I needed to “spring clean” like 10 years ago!



The best part of it all was that I found my orthotics for my feet…saved us $350 and my lamby…now that is something that has sentimental meaning and needs to be kept FOREVER!!!  It is probably sad to see how happy I was to see that little lamb.

I think I am addicted to this moving/cleaning/giving stuff to goodwill thing. It consumes my thoughts! I just think of how clean and neat my closet will look when I am done! Ohhhh happy days!



Chol gets home in a few short days! This summer is going to be a party! Assuming I keep my little self out of the hospital! :)



Life is oh so good right now.

Tara Lynn

Is this a glimpse of the future?

Yesterday Tara and I had an absolutely wonderful day.  Why was it wonderful?? Tara acted and felt like her "old self" - the one I used to know more than a year ago before all this started.  She acted and felt like her old self until about 4:00 at Nate's game when her feet started hurting like crazy; and then I remembered yet again that this is the daughter who has suffered through so much medication this year.  Her body has been through so much!

Many of you have been wondering how I am doing - you are so kind for your concern.... here's how I am.... the 2 months (almost) that Tara was recovering from her 2 surgeries were..... moments or hours of great times when Tara had energy, and other moments where she just had to rest and recover and get through the pain.  So, throughout those times starting the 2nd week of February until last week when Tara finally returned to work, I loved having my daughter around so much, but she wasn't really herself.  She just didn't feel good, so I guess that's why she wasn't at work!  Anyway, yesterday Tara didn't go to work; but it wasn't because she didn't feel good - which is the usual reason - it was because she needed to MOVE and organize. So, in response to your query, I am doing ok - but it's been stressful since February I have to admit; although I keep reminding myself when I get blue that there was NO TUMOR in her head in February, which lifts my spirits.

Last year when she got married she didn't have time to "go through her stuff" before moving in with Josh - so she ended up with years of accumulation from her bedroom that never got sorted!  Since the Gulbrandsen's had so much room at their home, I just kept giving her boxes and boxes throughout the year because I didn't want them here in the bedroom anymore; so it was piling up.  Tara went through all her stuff in the last week and is almost ready to move to the Curtis home (which, by the way, she is very excited about doing!!)

What was great about yesterday is that Tara had energy all day and she was happy and just BOOKING.  It was sad and a reality check again when her feet started hurting.  We will pursue homeopathic routes for her feet - Dr. Shapiro just shrugged his shoulders and said "I'm not a foot doctor" when Tara told him about her feet.  I personally think her feet trouble has something to do with either vancomyacin or the Temodar.  My sister, Jean, has a mineral foot bath and Tara tried it yesterday.  It was amazing how much brown toxins came out of Tara's feet!  Jean gave Tara the key to her house and she'll be doing foot baths weekly! Hopefully that will help.  So, Friday we have homeopathic appointments set up and we'll try that to offset the medical side effects Tara experiences.  I have her taking probiotics and slippery elm for her stomach and it seems to be helping.  Now we're trying blood root and mineral baths for starters on the feet.... chiropractor on Friday.  The podiatrist won't see her until she's done with chemo because what they do might interfere - so thankfully Tara found her orthotics and she'll just try to wear better shoes until they will see her.

As I looked at Tara yesterday, I had those thoughts that pass through my brain often, "I just want to be able to look into her brown eyes and see that smile forever!"  I just love her so much it hurts sometimes.  I have faith that I really can look at that face forever...and have more days like yesterday..... I love those moments that I can steal with all my family.... maybe I appreciate them more now after what we've been through!  Last night I stole a hug from Brigham - there is nothing like hearing "Grandma!" from across the room and then feeling little arms around my neck - it just doesn't get better than that!  Ryan & Steph are staying with some friends of ours while the parents are out of town; and I just had to stop by and see them for a few minutes....

Someone is watching over us

Someone is looking out for us. Josh and I just had an amazing experience this weekend. It started on Saturday when we learned that we needed to move. The Gulbrandsen’s needed the house for their own family…we understand…family first. The scary thing was that we only had until the 22nd of April. At first my mind started to panic but after a few minutes I felt this overwhelming peace. I just knew that we were going to be okay. Living in the Gulbrandsen home was a blessing and it came at the exact time we needed it. We were led there and we believe that we have been led to where we will be living now. Yes, in less than 24 hours of notification, Josh and I had found a new place to live. The Lord is looking out for us. Just another tender mercy, another reminder of His love. Sunday morning the Curtis’s (in our current ward) asked if they could talk to Josh and I. The word had not spread that we were looking for a new place to live. They told us after church they wanted to talk to us about moving into their home! Wait…seriously? Brother Curtis told us that he had a very strong impression on Friday to have us come live in their home. Friday was the day BEFORE the day we even found out we had to move. They were going to ask us regardless because of this impression he had. Tell me this isn’t meant to be…:) That’s not the end of it. President Stoker went to the Curtis’s yesterday to ask them to serve a mission for the Church. He went yesterday, before we met with them and discussed a mission with them. I cannot believe how this all happened. It still blows my mind to realize how blessed we are.




I know that this is poorly written and you may not understand all of it. Pretty much, the Lord is looking after us. Everything happens for a reason. There are no coincidences. Josh and I are extremely excited about this new adventure and are extremely grateful to the Gulbrandsen’s and what they have done for us and now also for the Curtis’s who have opened their home to us.



We really are being blessed through our trials.

We will be professional movers in no time!

Have a happy Monday!



Love,

Tara

PS from Becky - the reason it's so wonderful to have Tara & Josh living with the Curtis's is that both sets of parents are still CLOSE which helps a ton in Tara's situation; and also with all the $ saved by not paying rent, it helps them pay the medical deductible they have every year....and they can stay in this area where people know them and have helped us so very much.  We have a unique 2 ward family here!  The Northpoint Ward and the Estate Groves ward (both which are in a 3 square mile radius) are where they need to be - and they're still here!  YEA!!!

A much better day

So yesterday was rough but I learned a lot. It is amazing what prayer can. Once again I have learned what a blessing trials can be.

Today is a new wonderful blessing from God.

Tara

I don't want to be in pain anymore

Okay my brave break time. I am taking off my smiley face and just letting it all out. Hopefully it will make it all feel better. Venting usually helps.

I am so sick of being in pain. I could just scream. My stomach and head and neck and feet and well everything just hurts. Pain is my new normal and I want to go back. I want to go back to occasional pain. I want to go back to stubbing my toe and having that be my only pain instead of having it just add to the laundry list of other painful body parts. I am ready for this to be over. I think one of the biggest pain I want to get rid of is this pain that keeps festering in my heart is the pain of knowing that I may not be able to have my own children. Oh, I don't know how anyone manages this pain. I wish Vicodin could take this pain away..it can't and won't. Doctors can't stitch this wound back together. This is one I have to endure medicine free. The only medicine I can take for this pain is faith and apparently I need a refill... I just get so sad looking at baby pictures. I have a few friends who have had or are having kids and it is hard to say but I am extremely jealous of them. Cancer, I can handle. Being bald, while every one else has long beautiful hair...I have learned to handle...but not having children...this could take a while. I almost get angry and start cursing those who even consider abortion or fight for the right to have an abortion. Ah, it kills me to know that people don't want the blessings they are being given. I know there are others out there that are dealing with the same wound that I am and maybe in a further degree, how do you handle it? Please, I need help! All I have wanted since I was a little girl was to be a mommy. My wants have not changed one bit. I want to be a mommy. I have already named my first and second daughters! Kate and Adaline! I have already gotten the fabric for their quilts for their beds! Ah leave me bald forever...but make sure that I am a bald momma! Okay, now that I have wiped my tears and have gained control of my hysterical breathing I can finally, hopefully start to think straight. I knew this was going to be an issue. I knew from the beginning of treatment. I also knew my answer. I never remember feeling a time of more peace than of when I prayed about what to do about children. I knew then, and now know now that I will be a momma.

Remember this..."more importantly I KNOW whose hands I am in. I don't care what the doctors say because God is in control. Dr.'s would have said the Red Sea can't be parted and the blind won't see, the dead can't walk, and the dumb can talk but the most amazing thing is, with God anything is possible. I love my Dr.'s and I am so thankful for them  but they aren't in control, my Father in Heaven is. My life always has been in his hands and it will continue to stay there. There is so much peace in knowing that Heavenly Father is in control. I cannot even imagine enduring this trial without a knowledge of the Plan of Salvation and the gospel. It is amazing how much you can learn in such a short time. It is amazing how alive the scriptures can become and how immediately, everything pertains to you. Life has new meaning. Life is beautiful. "


Okay, I think my faith med refill is ready...now all I have to do is take it. I know I felt this way and I do not doubt my answer...that does not lessen the pain but hopefully it can help me heal. I just need to remember who I am and why I am here. I need to sit down and talk to myself and get through this trial. Come what may and......ahhhhh love it. Okay maybe I can learn to love this. For one, I now have more empathy for those who cannot have children of their one. Two, it will make the day I see my first child sweeter because I have experienced the pain. Three...what won't kill me will make me stronger and I am too stubborn to let this kill my spirit and hope. Four, trials are a part of God's plan. Just shows that God is still looking out for me and wants me to be the best I can be and I guess the best I can be needs to learn something new!

Okay,

Brave break over. It is amazing how much better I feel. Well, the Vicodin is kicking in for my physical pains and that help! :) But in all seriousness, I am ready to take my medicine of faith.

So, that was an odd post...thanks for reading.

I feel much better.

Tara Lynn.
a daughter of God and
future mother! :)

Recovery

Okay I made it!!! I am still alive. I am in recovery mode right now. Every time I go through this brain surgery stuff I learn something new. I thought I had learned it all... apparently I had not. I thought I could handle anesthesia just fine... I thought wrong!

The very first words I remember from waking up this time were"okay, you are ready to go now" my eyes were not even open and they were telling me I could go. I was seriously questioning their judgment and for good reason. They did not talk about anything other than getting me out of there from the moment I woke up. Nausea...not a problem for them. Just get her dressed and get her out of here! I felt like I was being herded out. I got out of their way and headed home in just a few short minutes. As we were exiting the freeway I felt that feeling that tells you, you better run cause something is coming up. Since that moment I threw up every time I put anything down my throat, including medicine. Without going into too many details you should just know that I spent the first 30+ hours after surgery without any pain meds. I thought I was crazy but I was yearning for the ICU. I wanted my good nurses that could help me with just a touch of a button. I tell you this not to make you feel bad for me but rather as a warning...When the nurses try to herd you out of there, don't give in. Make them take care of you for a while to make sure that you are handling the medicine well. Learn from my mistake.

Okay...now I know enough about brain surgery and I don't need another one to teach me something new. Three will suffice for me :) No more!!!


Today I am feeling the least amount of pain and the worst seems to be over. Sleeping is still an issue because my ruthless pillow loves poking my head in the night right where it is tender! I need my pillow to cushion my head not poke it!!!! :) I am eating fine again and did not lose too much weight this time around. My hair looks the best it ever has....not! I never thought it could do what it is doing right now...we all think it is rather funny. :) My head it too tender to wash it or wear a hat so it looks like the world can just have a good laugh for a few more days until I can wash my head.

Today I was babysat by my favorite sister in law! We played with Play-doh and colored pictures and ate pretzels. I fit in great with the kids! Oh, I wish I could go back to the care free days of play-doh!

Have a super wonderful Monday night

Love,

T

Home from Surgery Round 3

Surgery was this morning, and we are already home!!  It really was outpatient and Tara is sleeping downstairs.  She has to fight the usual nausea and pain from surgery; but we have lots of pain meds on hand and "team Tara" (family members) are good nurses; so she was released to our care.  Surgery was less than an hour and went well. Here's the details:

Dr. Smith said he saw infection AGAIN on a titanium plate at the top of her head - so guess what? He just plain and simple took that plate out; never to return.  He's tired of this infection recurring and apparently Tara's head doesn't like that plate; so it's out.  This means she'll have a dent in her head the size of a dime - but dents don't bother us.  The infection was only around the plate and he didn't see any on the bone flap - thank heavens!  She does have 4 other plates in there that are supposedly fine - but this one is troublesome being at the top of her head where there are not good blood vessels around to help fight infection.

The down side to all of this is that instead of finishing Vancomyacin March 29th, we now get to take it for another month.  So, pray for Tara's poor stomach to tolerate this drug.  We are working on combating the toll it takes on her stomach and yesterday Tara felt pretty good; so maybe the probiotics, slippery elm, and ulcer meds are all working!  We were really looking forward to not having this drug as of next week; but such is life, it's better to be safe than sorry!

We are getting to know Dr. Smith a little too well  - we really expected never to meet him - always hoping for the best and hoping ONE surgery would be it; but met him we have.  He is a very skilled surgeon, and very kind and we like him very much.  We are blessed to know two skilled, kind, brain surgeons!  His father had a glioblastoma, so he's very committed to the cause.  He really has Tara's best interests at heart.

Dr. Smith also said no chemo of any kind for a month.  No clinical trial or Temodar.  That puts us behind yet another month in our treatment schedule; but all's well because he reminded us he didn't see signs of a recurrent tumor in there; so the infection right now is more important than the recurrent tumor (that isn't going to recur because so many of you are praying and I have faith she will beat this!!!)

Love to you all,

Becky

Here we go again and now again...

Well we saw our Dr. Smith today and he looked at the little hole in my head. That little hole is costing me one more surgery... slim chance of tomorrow with a most likely of Friday...

To put you all at ease...mostly my mother...if all goes well, this will be an outpatient surgery (no ICU or hospital food!) and he will not go into the brain. If he gets in there and it looks like my precious bone is causing troubles we will have to go the titanium plate/helmet route. He said this is the last chance he is giving this hole and next time, we go take the bone. All the medicines I am taking is making it really hard for my body to heal correctly and that is the major problem. We are stopping Avastin infusions until I am completely healed. I was a good girl and did not pick at the scabs at my head or wash my hair so we know that this is not all my fault...we blamed it on me last time. :) This is my wonderful infections fault and we are trying so hard to kill it.

Also, I have had my first experience with acid reflex and I am not enjoying it at all. The Vanc completely killed my digestive system (as if it wasn't suffering before!) Now I am taking 50 billion + of these probiotics to try to help...we will see how this new problem goes.

Anyway, that's the update as of yesterday. We should be fine...

Please third time's a charm!!!

Four just isn't a lucky number.

PS.

Surgery Friday would be ten times better than tomorrow...then I get to see the Jimmer play on Thursday night! Please brain hold on til then!

T

Recovery

Yes, it is I, the lost blogger. I have come back to share the news since the last hospital visit. My mother gave all the medical details including the growing pussy hole in my head and the visit with Dr. Smith I assume so I will get to the fun stuff which includes...
Vegas/JIMMER
Horses with the Hatchs
Creative Bows and Arrows/POGO
 and last but not least....SHAMU!!!!!

First stop...JIMMER!

Okay, I am now aware that the whole world does not know who Jimmer is or love him as Chol and I do. For those of you who fit in this sad category...please take a moment and do a little Google-ing of my good friend Jimmer.

Now that you are more aware and in awe as I am you will further appreciate my amazing trip to Las Vegas to see that one and only Jimmer play in the Mountain West Conference. I could sit here and tell you about how I feel about the stinky casinos or the buffet I about died eating at but instead I will focus every character of this segment on Friday Night (aka the Jimmer night).... Okay so as you know, I recently had surgery for the second time. As I well know, the rules for recovery from brain surgery are "no running or physical activity is strict" for the first three weeks! What the doctors did not realize was the fact that I very possibly could have missed the tip off to the most intense basketball game of my life. So after watching the clock and realizing the extreme traffic we were in, I had to make a decision. To run, or not to run. RUN!!!! How could I not? I of course had Chol and Nate on either side of me practically carrying my the whole way. I swear we ran more than a mile. I got the strangest looks! Who is the girl with missing hair, a fanny pack, and kids carrying her at an intense speed? :) Thanks Cholzone and Nate for carrying me there. We walked into the stadium for tip off and then quickly found our seats.  This weekend was the first time since before Ryan's wedding that the Schlappi five children have been together, just us. We all left our spouses at home. I looked around and saw all of my siblings screaming their heads off and rooting BYU on. I have never had so much fun at a game. Jimmer of course had to give us a show and beat his record and scored...52 POINTS!!!! He scored 52 points in one game. I have saved my ticket knowing that it will be worth millions later! :) ha. He was on fire and so were the fans. I almost felt bad for the other team until the guy in front of me decided to stand the whole last 10 minutes just out of spite. I have never been so angry at another fan before...I was so close to smacking him and I am usually not a very violent person. From the pictures, you can tell that we did not have the world's greatest seats but I will not complain...and it will remain the greatest game I have ever attended. The risk was worth it and so was the headache! Go BYU! You just got Jimmered!

I only have one and I am gunna love her forever!

All Five

I just erased a wonderfully, semi-disgusting picture of my head. I figured not everyone was not as intrigued with disgusting pictures as I am. Yes, the night after Jimmer night, we had leakage in the head. I am sure my mother has informed you. One would maybe try to blame it on all the excitment of the game mixed with the mile run to get there but I prefer to do otherwise. This head hole is not Jimmer's fault!

Next Stop...Horses with the Hatch's

For starters, Brother Hatch is the cutest cowboy that ever lived and Sister Mary Helen Hatch is most beautiful angel that I have ever met. Not a soul would disagree with me. These people have got to be the msot Christ-like people in Mesa. They have always been my friend and through this whole brain mess have constantly been taking care of me. One day, during a visit they brought up the idea of possibly riding a horse when I was all better. They knew by the excitment on my face that they were in trouble...I was going to be healing extra fast! About a week later I got the call...the horses were ready and luckily...so was I! I got to spend a wonderful afternoon with Jerry (my horse) and the Hatch's!

Third Stop... Bows, arrows and a Pogo stick

I have a very creative husband who has been dying to shoot a bow and arrow since the day we were married. He researched how much they were to buy and realized that they were too much so he started researching how to make one. The wood is expensive but it is still something he wants to do before he dies. He is a smart kid and knows that we are proabably not going to drop a few hundred dollars towards a bow right now so last Sunday, he improvised and made his own. I was taking a peaceful nap on the couch and after waking from my nap and saw Joshua walking around in the backyard. After watching him for a while I finally realized what he was doing...my man was making himself a bow from the backyard bushes! He used a rubberband and tied the whole thing together. It was completely priceless! He may not be too happy with this little segment but I had to add these pictures. Notice the church shoes with no socks...once again making it work with what he had. I took a great video of him shooting the arrows and grand five feet but I think I will leave that off for now! He said Nephi made it of the wilderness and figured he could too! :)

Now for the other little tidbit I had to add!

Pogo stick...Jessa's birthday wish and my Sunday thrill! Josh had to help me...

Jess was really good at it

Josh was amazing too but a little heavy so we made him stop! I am jealous of their balance skills!

And now last but not least.....SHAMU!!!!

Ah what a dream. I loved every second of it and there are more pictures that are better than my phone pictures but I wanted to put something here! I have been wanting to see Shamu for a very long time and this weekend...I saw the big beauty in person!

These guys were so loud and so active. It was nothing like to zoo where it is rare to see the cool animals move.. Sea World rocks!

If I had to pick friends based on looks...we would not be friends...you look too mean!

This turtle was massive

At the long awaited Shamu Show!

You can't tell this is a kangaroo but it is and they are incredibly soft. Almost unbelievably soft!

This Polar Bear was so fun to watch and held nice and still while I stole this shot!

Then came right to me to see how he looked in the picture...had to make sure it was a good one ...ha

My favorite friend that I stared at for about 30 minutes. We liked him so much we came back to visit at the end. I just think they are beautiful and he really liked getting his picture taken!

kisses??

Shamu Shamu!!!

Well as you can see, recovery hasen't been all that bad. Sure it was more difficult than last time but we still managed to have tons of fun. Brain surgery stinks but it won't ruin my fun! 

Cancer you got nothing on me! Imma win this one

Tara Shamu Bodrero

also.

please pray for my head. i know i said it would be fine if i had to end up in a helmet but i would be fineR not and i would prefer to not go into major surgery number three...

thanks

t