Wednesday, June 29, 2011

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!

Tuesday, June 28, 2011

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!

Thursday, June 23, 2011

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

Friday, June 17, 2011

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."

Tuesday, June 14, 2011

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)

Tuesday, June 7, 2011

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.

Monday, June 6, 2011

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/

Wednesday, June 1, 2011

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.