Tuesday, December 13, 2011
Well, fans, we ARE GOING! Miracles do happen and we indeed leave Thursday for our trip. 4 different flights, 4 schedules; and hopefully we all meet in San Juan, Puerto Rico and enjoy each other this week. We will miss Ryan & Stephanie sorely; but will enjoy them and Brigham when we arrive home on Christmas Eve night. Tara is a little anxious about seizures - she doesn't want to have one on the cruise (or ever for that matter) so in your prayers; please pray that she is seizure free and able to enjoy this time together. Thanks sooo much!
It has been CRAZY around here trying to prepare for Christmas and a cruise. I, once again, am so grateful for the moments that make up life. Last Friday I was so happy that Tara felt like helping with the cookie baking / caramel popcorn popping job. We wanted to give some goodie plates to our neighbors and friends (who live close enough to deliver plates to!) who have been soooo good to us. Tara actually had energy all day and worked like a trooper to make those cookies. She said the math skills involved in cookie making were good for her brain! I don't take those priceless days for granted. I don't remember the last time Tara had energy all day long. Usually if she's at my house, she may have energy for a few hours at most; but then she's here because she's usually sick or eating dinner. Not usually is she here because she's energetic and wants to help with a project. Don't take your daughters for granted. I love working on projects with my kids. Stephanie and I made a quilt for Brig's bed together; and she's in the process of another one, and I look forward to the day Rachel will live here maybe with a few children at some point; and she can hang out during the day and work on a project! Anyway, I cherish those times. So, here's the truth about how Tara is feeling:
She is more energetic overall than she has been since before surgery
She has been working more days at work (a good sign)
She doesn't take naps much anymore
Her head is completely healed and ready for swimming in the British Virgin Islands!
She still fights bad headaches that scare her at times
She said last week her "body felt like it was going back on chemo again"
She has a loss of appetite
She says her math skills are pretty poor, and reading is more difficult
Not sure why the math and reading; I do believe that since she can do math and can read (it's just harder) she can work at those things and they will increase in ability. She didn't seem to be affected in those areas after the original surgery; so I am hopeful the brain can regenerate and increase it's abilities in those areas. We'll ask Dr. Shapiro and Dr. Smith about it next month. I hope the cruise menus will tantalize her taste buds and shock them into working again!
Our house is mostly a happy house these days. It's exciting to think about Rachel's upcoming wedding, and the trip. Stephanie is looking pregnant and it's fun to watch her stomach start to grow. She finds out what the baby is while we're on the cruise.... I love having my family around me and will look forward to alot of that at Christmas! I am blessed with good health myself; so I can keep going.....
It's been quite a long 18 months - but here we are with one treatment left in January. Life is good. I hope you all have a wonderful holiday season - and enjoy the little moments - I will never be the same again. I hurt more when others are hurting (emotionally and physically) and the good moments are just sweeter. I don't even take a day for granted anymore. I love looking in my children's faces and memorizing the moments we have. Don't let your lives have something very shocking happen before you stop to be positive and love the moments we have been given. Learn from our journey and enjoy your health and energy NOW. In Mike's talk he says, "instead of focusing on the things I can't do; I try to focus instead on the 990 things I can still do!"
Love you all! Merry Christmas!
Tuesday, November 29, 2011
Becky again.... just couldn't help sharing some insights into Tara. I knew all you faithful followers would want to hear from her heart again.
Now, for the medical / other update from my perspective. Last time I wrote, we were headed to Dr. Smith & Dr. Shapiro's offices. Dr. Smith did indeed take Tara's stitches out that day; and pretty much ordered her to go swimming in December. He told her to shower, that her head is waterproof and not to be afraid of infection anymore. His nurse was so kind; she said, "the only thing we want to put in our charts or hear from you about is how great your cruise was!" Dr. Smith had to be psychologist and doctor at the same time - to try to encourage Tara to live it up and believe that she will be okay. She had a hard time that week - she was, to put it bluntly, very blue and sad. Which, doesn't happen often, despite all she's been through. She did indeed at the end of the visit open up to good Dr. Smith and he said it's okay to have a bad day, but don't let it carry on too long - his advice was similar to Uncle Mike's - don't let a bad day turn into a bad week or a bad month. He reassured Tara that she's been through ALOT the past 1 1/2 years and she's entitled to feel blue some; but don't let it drag on.
Next, we went to our absent minded scientist doctor - Dr. Shapiro. He was ready for us this time, and before I could even whine about chemo making Tara sick for the trip; he looked at Tara and said, "You have a trip coming up, and I don't want you to finish your last 4 doses of chemo until January." This came from the doctor who for 6 visits (at least) in a row couldn't remember why we went to San Francisco for the original surgery. He had to keep checking his notes - poor Dr. Shapiro sees so many brain tumor patients! Anyway, we are now to the point that he knows Tara pretty well now and she always generates a smile from his scientific face. He goes to her first now to give her a hug as she leaves the office. Tara has completely won that good doctor over. When Tara's head started leaking again in October; she took 1 of her chemo pills; then stopped so she could have surgery. So, she has 4 left - treatment is not done after all. Shapiro said it won't matter if she waits till January to have those last 4 pills; but it is wise to finish the treatment. There must be something important to that specified number of treatments.... I don't understand; but oh well.
So, after all this; Tara still did not feel well at all. She has been sore from her port removal; plus when that nurse hit a nerve while attempting an IV, her arm still has not recovered; although it is progressing. She felt like a "sick person" (according to Tara) and she felt pressure to feel better so we could go on our trip. I try to reassure Tara that if she doesn't feel good; that's why we bought trip insurance; and we can wait until summer. So, after all the clearance from doctors - it doesn't work if Tara still feels sick so much.
Thursday, November 10, 2011
As nurse #1 proceeded to attempt the IV; it was really hurting and she must not have hit the vein well. Tara's beautiful pixy face was pinched with pain as the nurse tried to get blood to come out of the IV. No luck - no blood came out and she finally withdrew the IV needle. Try #2 on the other arm. She put it in and instantly Tara cried out in pain (real tears) and freaked out because her hand was suddenly going numb and she was hurting so very much. I ordered the nurse to remove that IV. Thankfully Tara did get feeling back in her fingers after a few minutes. I had my cry for the day as I watched this all unfold. I look into Tara's eyes; and most of the time I just see Tara, my daughter, my friend - I reflect on all the years I have gazed into those brown eyes. Other times like today; I see in those eyes Tara, the brain cancer patient who has suffered so much so bravely. It just breaks my heart to see the pain. I want it to stop.
The nurses wouldn't leave us - they were busy doing other things to prep Tara for surgery. I told them we needed a few minutes with the curtain shut before we could proceed with another IV attempt. Through my tears, I held Tara's hand and prayed with her for the next IV draw to go smoothly with as little pain as possible. I pulled myself together (of course, Tara was already pulled together way before me!) and then opened the curtain and told the nurse we were ready. We pasted our smiles on and a nurse #2 tried the IV this time. It went in so smoothly and with very little discomfort. Tara was calm through the whole thing. I had them put a warm blanket on her before this attempt also and during all of this she was trying to remember to BREATHE. Blood came out smoothly from the IV; and then she was good to go.
She is sleeping now; but needs to wake up so she can see Dr. Smith and Dr. Shapiro; also scheduled for today. We're trying to consolidate appointments!! The final decision on the cruise may be made today depending on Dr. Smith and Shapiro and if Tara feels comfortable with the whole idea or not. I hope Dr. Shapiro decides to just be DONE with chemo and doesn't want to finish that last treatment she only started for 1 day before the whole surgery thing.
Can this possibly be the last time we'll be in post op? I pray so. I hope so. I really do. It is possible - with the Lord anything is possible. Every day Scott & I pray that this will be "taken" from Tara.... and I know so many of you pray that also. I want her body to HEAL now and get stronger, and Tara desperately wants that also. Pray for healing and strength please, as well as the tumor being rebuked and taken from her.
Thank you all from my mother's heart to yours.
Sunday, November 6, 2011
Can I swim?
-reasons this is in question
1. I am just under 5 foot 8 and now weight 127 and I assure you that none of it is muscle...that cannot be a healthy swimming body...I am going to need some serious flotation device and since we are not going to be checking any bags....I do not think I will have room in my carry-on for every thing I need for 9 days and a few life jackets! :)
2. I am no longer "half bald" but I would say I am still 1/3 bald. Any ideas on that one to keep the sun off while swimming but I cannot have anything that will be tight....ahhh.
3. Will I be healed? Eternal optimist mom says yes...I sure hope yes and we all know what Smith will say but what will my head say?
4. Port. Port. Port. Port. Port. Port. Port. Mom if you are reading this can you please call Terry and every other surgeon you know so we can get this wonderful thing out!
*****Dear readers...as you may be able to tell I am in an extremely sarcastic mood and I do need to clarify one thing. I do wish to get my port out right now but if anyone ever asked me whether or not they should get a port I would say yes without a hesitation if they are to have any long term treatment. I have loved my port and it has helped with a lot of anxiety especially when it came to needs for me. I cherished my port when I needed it and now I just do not need it anymore. I just do not want people to think they are bad and not suggest them to people because I wanted mine out so bad. Okay...enough for the lengthy disclaimer.
So yes I have had 6 brain surgeries. I was kidding with my Josh a while ago and I told him that we would just have as many kids as we did surgeries! The doctors told me that my chemo would kill my eggs and of course I decided to shut my ears and say "la la la" when they said that. Instead I decided that for every time they cut em open I would be blessed with a baby! :) Ummm I think we need to slow down on the surgeries. 6 should suffice but be thy will. My Aunt Juls said 6 is her lucky number so this has to be it. Sorry Rachel and Nate and whoever else loved 5...I think Julie has it! :) I hope she does.
So this whole treatment thing has kinda sorta...well taken all my muscles away from me. Me and miss Julian (hard core trainer on video tape for those of you who do not know) need to have some serious dates before this cruise or I am serious concerned I may die! :) We need to get down to business. No more of this " Now Tara you are going to have stitches or feel pain or nausea or get light headed and freeze or seize or feel tried all the time or lay in bed." No I am ready to go. Get this port out. Take me off the 20.0000 medicines that all have the same 4 yellow stickers that tell me "do not to operate heavy machinery","use cation when driving", "do not drink alcohol, may increase severity" and "may cause drowsiness" They all tell me that I am a tired drunk and I am sick of it! Done to all of them. Wow now this has turned into a venting session....I do need to blog more often! :) Sorry if this is getting boring...it is good for me. I understand if you have stopped reading.
If you have prevailed, today was a wonderful Sunday. I was very nervous about going to church in a new ward (news flash we moved again if you did not know) I have been in the same ward pretty much my whole life. It was really scary for me. I said a few prayers of course and Heavenly Father is looking out for me as usual. He sent me a new angel to get to know. I went home and just cried I was so happy to have a friend to have at church. Someone to sit by and talk to. She even has a baby boy she let me hold for a little. Each night I pray that one day Heavenly Father will allow me to be a mother to a precious son or daughter of His. I have this new pinterest thing where I go look at cool ideas and I will not let myself go look at baby things in fear that I will never have one of my own but what is fear. Tonight after my Scripture study I am going to go crazy on pinterest finding cute ideas for my future full family :) I am going to let myself dream and hope and picture myself holding my baby in my arms wrapped in the blanket I made her. Heavenly Father knows I can be a mother. I can dream. I will dream. Last year I picked out fabric for a little girls quilt....my first daughters name is Kate. I want to start Kate's quilt. My fear of not having children has made me not want to start that quilt. I know fear is of the devil. I need to start that quilt. I need to start that quilt. Heavenly Father knows much much more than doctors. I will start that quilt.
I am back.
Wednesday, October 26, 2011
She still is in pain - but I don't ever know how much because she doesn't like to tell me. I do know it still hurts; however. She can't bend down without her head hurting and she still needs to sleep in and rest often. After all, there was some "sawing" that went on in her skull - which causes pain for sure! But, she is a fighter, and she's fighting through this one and we will make it! She is still my hero and the "princess on the hill" as Collette would say... (Scott's sister)
I have heard from so many people this week that Tara is still in your prayers every day.... I am so amazed by that. It humbles me and makes me realize how sometimes I don't see outside my own "box" sometimes and need to remember all those out there who are suffering and have trials.
Monday, October 24, 2011
LOVE our anaethesiologist! Tara did not throw up once until last night; and we think that was from the Percaset. She has never been able to eat the first night before; and his concoction worked! Yea! We will keep him in the charts and use him for the port removal surgery. Her eating this surgery has been better than all the others this year.
SURPRISE VISIT from Uncle Mike! Can you believe it? He was in town to speak at a convention in Scottsdale for the day; and had his driver re-route him to the hospital instead of the hotel for a few hours! We were so surprised and LOVED it. It's impossible to be blue when Mike is around. He wheeled right in and brightened up our dark room (Tara hates light and noise for awhile after surgery). We ordered lunch out from a favorite Italian place close instead of eating hospital food and had a little party!
NO CULTURES GREW! That means prayer #2 was answered! I am so grateful to our Heavenly Father who is still watchful of Tara as she goes along this brain tumor pathway. Tara will be on antibiotics for 2 weeks as a precautionary measure only. They will be in a pill form - NO IV ANTIBIOTICS! They should not upset her stomach as much.
She will still probably be expected to go through her last chemo treatment that she skipped this week. She will do it in about 3 weeks after healing has happened. So, our expected news about finishing chemo was a little premuture; but all is good because it's still just one more treatment! Now, we just need to pray that Tara's head heals quickly enough that we can go on that cruise in December.... but if not, we will remain positive and plan a different trip....
Thanks all for your prayers..... we feel them strengthen us so very much!
Wednesday, October 19, 2011
Well, fans, I just spoke with Dr. Joganic - surgery #6 is about to wind itself up. I am sincerely hoping and praying this is the LAST, the very LAST surgery!
Tara once again headed through the double doors all smiles and sleepy. She remained positive all last week as she prepared for surgery. I am the only wreck around who mopes and cries. I did successfully not cry this time as she went through the double doors - just fought to hold back tears and this time I succeeded. Tara's smiles once again carried me along.
Dr. Joganic said the reason for the hole in the head was that the hole was where there was a bone screw or something like that which was putting pressure on that area of the skin. He talks fast and I would need to record it or have him say everything again; so I'm doing my best to hurry and type what I know. He said the collagen cells have already turned on to healing (how does he know that?) He said they usually take 13 days; so there is a chance she can even heal faster than the last surgery. The biggest dilemna to healing is that her skin never will be the same since radiation last year; but the INSIDES of her head are looking good. He did a small bone graft - put some bone material in where they drilled some bone out. Dr. Smith was the bone driller, and Dr. Joganic was the one in charge of the skin. So, Dr. Smith drilled out some bone tissues; smoothed it all out, and then the graft with some webbing (titanium) was placed over the bone material. This will make Tara's head all smooth and pretty again and therefore reduce the pressure of the skin stretching and therefore pull off a LASTING healed head. At least, that's the plan. Her bone did not look infected - that's ONE answer to prayers - he said as they drilled to just smooth it out; the blood and bone tissue looked really good. Her tissue cells have healed from last time and he was generally pleased with her insides.
So, for my second prayer - no antibiotics - the verdict is still out on that one. I was really, really moping and frustrated because the seizure med takes away Tara's appetite; and the antiobiotics are just horrid on her stomach; so I was very blue about this whole surgery. Dr. said he did not see signs of infection (YESSS) BUT they sent some tissue off to pathology just in case. In other words, we will know in 2 days if she "grew" any infection or not. I pray she does not have any little tiny traces of infection; because if she does; those doctors will slap those antibiotics in her system pretty fast.
The anaethesiologist used a different mix of stuff today hoping to help Tara's nausea. We'll see how that goes. She's headed to recovery now; so I'm going to sign off so I can be with her. I'll post more when I can.
Thanks soooo much for your prayers! I am feeling better now. I really really hope we can still go on the cruise; but I'm not sure about that. Her head has to totally close up. Dr. Joganic said not to rule out the cruise; but he didn't exactly say she would be fine...... we have to pray she heals quickly. If not, we will still keep our chins up and plan some other trip - but we would have to wait til summer and I don't want to wait to celebrate the end of treatment that long! I'm not exactly the most patient person; although this whole process is teaching me more patience than I ever wanted!!
Love you all so very much! I will be happy to tell Tara the doctors feel good about this. We just need to get to the place in her life where we can stop checking the inside of her head every few months!!
Friday, October 14, 2011
Thursday, September 22, 2011
First on my mind and very exciting to me. I ran my first mile since diagnosis!!! I was so sore the next day but it felt so good...I ran a mile only to end up in the ER the next day for...kidney stones...yay :( not sure if I wrote about my first encounter with them...this is my second this month. I have a happy 6 mm kidney stone sitting in my right kidney waiting to drop and cause me extreme pain...time bomb waiting to explode! We are going to try to dissolve the little bugger before it gets on the move.
Okay so we are through kidney stones 1 and 2 and my mile maddness... now onto my wonderful new opportunity next summer! I guess since girls camp I have started myself a little speaking career. Next summer I have the wonderful opportunity to speak at a girls conference called Time to Blossom. I am so grateful that I will have this chance to share what I know and love with all these girls. Earlier this month I also spoke at a Stake Standards Night and got to share my testimony of how important our standards are and how they can either lead us to the temple...or away. Growing up I have always been petrified of speaking to people but now I get to talk to people about something that I am so passionate about. I get to share my story and my miracles. I get to share my testimony and my love for my Savior. I hope to inspire them with the experiences that have inspired me! I get to share with them something that has become a major part of who I am. Every time I talk to the youth I feel so strong that it is what it is what I am supposed to be doing. I pray that I continue to have more chances. I feel like I can be needed here to help the youth and others around me with my story. This is another reason that my trial has been a blessing. I absolutely love sharing my story. My hair is getting really long and I am looking more normal. People don't stare as much as they used to and this may sound weird but i don't like it. I like people asking me about my head and I like being different. My hair is getting so long that my oncologist asked if I was wearing a hairpiece today...seriously Shapiro??? :) Then I went to the watch place with my momma and another man thought I was a different daughter of my moms...
Okay next item of business
Last night I finished a treatment of Chemo and what does that mean????? ONE MORE LEFT??? UNO, 1, only one more and then...well, then I am done! What am I going to do with myself??? :) ha we are going to party in the British Virgin Islands in December to celebrate! Mom will be celebrating the most...celebrating less trips to barrows, less grumpy sick Tara days, less chemo days, and most importantly...not shopping for one Christmas present!! We are going to give each other gifts that don't cost money this year and go on the cruise together!! So exciting! I have mixed feelings about being done with Chemo but I guess it will be nice to not get sick...i just like having that medicine fight for me in my brain...it gives me peace. I also have mixed feelings about getting in the water. Some call it fear. Okay I will admit that I am scared to get in the water. Maybe a little because of sharks but mostly because of my wonderful head. I just do not want to end up in a hospital bed again. I am just so scared that the water will somehow get in there. The doctors have assured me that I will be just fine and I know that they are right...I just still am a little scared. I am sure I can work through it by December though.
Wow...a lot more has happened this last month but I am getting kinda tired so I think I will try to rap it up but before I do I must tell you the highlight of my month.
MY SISTER-IN-LAW IS PREGNANT!!!!!! 9/9/11 we found out. I was in getting an x ray on my kidney and when I come out my mom is literally screaming that Steph is pregnant. The whole office and waiting room is very excited for us! I am sure the neighbors heard too... :) They have been trying for a while and I am so excited to see this new Schlappi!! Ah 9 months need to fly by fast
okay last item of business
some of you may know how I feel about scorpions. If you don't. I do not hate a lot of things. I feel like hate is a very strong word so I use it carefully. I do not hate cockroaches or spiders. I do, however, HATE, loathe entirely scorpions.
(as a note before the story... WealthPlan was having its' first conference and we gathered all employees from across the country. Angie, our newest employee, had the blessing of staying at our house...lucky her :) )
2 loverly evenings ago I was settling down to watch me some HGTV...a personal favorite! I grabbed my favorite blankie...still call it that and plopped on the couch with Angie. I look over my left shoulder to see a tan, very alive, man-eating scorpion ready to kill me. I of course screamed, began hyperventilating and jumped to higher ground while throwing the blanket across the room. Angie was a bit confused to say the least. She understood further when I began screaming scorpion over and over. I told her to get Josh quick so he could kill the beast but instead she found it and killed it...what a brave soul. I have still never killed scorpion and I intend to keep it that way. A special thanks goes out to Angie for saving my life!! :)
ha I just told Joshua that I was writing about Scorpions (he is ready for me to be done as well) and he asked me if people wanted to hear about scorpions. well people you probably don't but I want to keep this as my journal so it stays!
Okay now the rambling has gone to far!!
ahh I missed blogging!
I love you!!
Thanks for being faithful
Monday, September 5, 2011
Thursday, September 1, 2011
The other night for the first time I blow-dried my new hairs!!!
And if that wasn't enough I teased it...and then I curled it...and then combed it and fluffed it every which way possible!
Josh had tons of fun taking pictures of all my hair styles...so happy that I actually can have a "style" now.
Man I really looked like a goof!
Ahhh that was a nice random post...
I felt it more interesting than all the doctors I have been to because of my silly kidney stone...
Happy 50 tomorrow dad!!!
Wednesday, August 24, 2011
I am not the same girl I was. I gave a talk on Sunday and while preparing I thought of how much I have changed. I am a completely different person today. I think it is for a better.
Okay my hair...having a little problem with it. I actually want to cut it...shorter but I know that my Joshua would not appreciate it. He wants my long locks back...don't blame him...I did look pretty good. I just want to keep it short until the "patch" grows back...then the grow out can begin. For now I will leave it as it is...happy husband makes me happy.
My Chol is gone too...seriously it was more hard this time than any other. We had a pretty good summer but an awesome last week. I got to see her everyday and hear all about her life. I love talking to her. Josh just says that I love talking! :) Ha, he is probably right! In fact, I know he is right. I just love people and I love talking to them...most of the time! :)
I see that my momma has already given to good news about the scan... so I will just continue my rambling...I am probably seem to like rambling more than talking! :)
Today on the doorstep I had two boxes of baby stuff...I am still perplexed as to why it is here...no credit card changes or anything. I don't have a baby and I don't go on baby sights. I am not pregnant and I do not wish to own baby formula or products. Anyone who has a baby want this stuff...there is two big boxes of it...not really sure what it is but it is going in the trash unless someone speaks up.
Now on to my final ramble about my pointless doctor visit today. I saw a urologist. Shapiro wanted me to because of the kidney stone I passed. Just when we thought we had taken out a few doctors we get a urologist. I think I am fine and so does he but he still needs blood work, a urine sample, and an ultrasound. I really wish all these doctors could share! I am becoming quite the pro at filling out paperwork. I decide what is important and what is not. They ask for my medical history and I decide that they don't need it. I simply write GBM. They had no further questions...worked like a charm! So know we have a new doctor who is pointless. Kinda fun to have one of those...all the others are kinda important.!
Ward Pool Party tonight (aka..free food for Josh and I tonight!) I actually completely submersed my head today in water. First time since February. I actually forgot what it felt like. I washed my hair with shampoo instead of anti-bacterial soap. We are making huge progress here! It is so nice to be able to wash my hair in the bath instead of bathing and then getting dry and dressed only to get soaked when I wash my hair in the sink.
Okay enough rambling...I am hungry.
Sunday, August 21, 2011
The MRI last Tuesday was actually BETTER than the one 2 months ago. There are these white areas on an MRI called "enhancements" which is area the dye goes to where tissue or something builds up. This small area of enhancement was visible last MRI; but gone this time. Last December when we were quite scared about too much white showing on the MRI; it turned out to be dead tissue from radiation; which was only possible to figure out via surgery. Anyway, this was good news this week - especially since Tara was worried because she had been having bad headaches for awhile; which can worry her. So, we happily showed Tara's head to Dr. Smith who agreed with Dr. Joganic that her head is healed - although the skin is very thin; it is still covering the wound which is fabulous! Dr. Shapiro prescribed more chemo - which she started on Thursday.
Tuesday night after spending most of the day at St. Joseph's Hospital Tara & Josh returned that night with kidney stones of all things! I bailed on this visit; by the time I got their phone call they were already checking in the ER; so Josh handled this one. Poor Tara - how much can a body handle? Really, now!!! She had kidney stones about 5 years ago; and man oh man, it looked so painful then and it was painful for her again this time. So, they gave her some more hardcore pain meds to get through it and hoped she would pass the kidney stone. Well, it took 4 days! She finally passed it last night; just in time to stand up in front of a young single adult congregation this morning and give, might I add, a very moving talk. So, now she only has chemo sickness to deal with. BUT, at least it's only ONE thing to deal with. No more saline flushes, heprin flushes, antibiotics, sanitary gloves, alcohol wipes, or various other supplies need to be in our house. They're all going in the TRASH.
Guess how many chemo treatments after this one??? 2!!!! That thought keeps me going. Tara wants more - I want her to feel better again - I dream of that day - so 2 more treatments here we come! After 14 supposed months of treatment (which has turned out to be longer because of the brain infections) we WILL finish. Like Tara said in her talk today, she will WIN and beat this cancer. Guess what else? We splurged and planned a cruise for Dec 17-24 to the British Virgin Islands to celebrate the end of Tara's treatment! I still have to buy the plane tickets; but the cruise is BOOKED. Merry Christmas Schlappis! I was so very sad that Tara couldn't even get in the water at Lake Powell; that we really just wanted to do something else that she could totally enjoy when this is all finished. She'll have 6 weeks to try to recover from all this chemo before the trip. Hopefully that's enough time to get enough medication out of her body that she can enjoy herself. She'll still have seizure medication that makes her tired; but she can alternate between sleeping on the beaches and swimming and snorkeling in those beautiful blue waters of the Caribbean! The chemo is starting to pile up (cumulative effect) and she's sick longer and more often; but that's to be expected. I, for one, just cherish the good days even more. The end is in sight!!! Then we have done all the doctors know how to do and Tara is in the Lord's hands. I, of course, will throw homeopathic treatments Tara's way and try to do everything we can to help fight this tumor and discourage it from ever returning.
One more thing.... we did indeed give away the quilt; but we have no pictures yet; so we've been waiting to meet the recipient and get pictures; and it's been tricky; so hopefully they will be forthcoming. Just know it went to a very special little girl. All we know right now is that an 11 girl named Lilly was in one of Arizona Oncology's Clinics; and her grandmother bought her a single raffle ticket. Lilly is fighting a bone tumor and is having a rough time undergoing radiation and chemotherapy. Terri Thomas, one of the foundations organizers, took some tickets to the 2 clinics she works at and sold some tickets. When Dr. Shapiro drew out the winning ticket last month; Tara & I were initially disappointed that "one of our people" didn't win the quilt; but after finding out a little about the winner; we were very happy. We believe the quilt is where it should be and I hope it will provide some cheer to Lilly. We are hoping to meet her; but her mother has not returned calls yet - so the whole privacy thing has to be sorted out first.
Tuesday, August 9, 2011
Sunday, August 7, 2011
My life has definitely changed in the past month starting with Girls Camp.
I remember going last year...that is when I had to realize the severity of my cancer and what it could possibly mean. This experience was a complete 180 from last. I got to have so much fun and I got to realize what I have really learned in that year. I actually found a little journal entry from that day last year in my scriptures. Back then I was so scared to die and that was all I could think about. I was too scared that my life was going to be ruined because of this cancer. I saw it all as a horrible curse and really viewed it only as a disease. Soon after I did some serious soul searching and have learned a lot about me and my Heavenly Father. This girls camp my journal entry was much different. Instead of focusing on the hard parts of this cancer I got to focus on all the good things.
Okay I must go back to two days before Girls Camp even started. My mother did not want to go to girls camp...she wanted to stay home with me and make sure I would be okay...remember I had surgery the previous week. Being the stubborn piece of work I am I continued to tell my mother to go to camp and pack her bags. My momma's stubborn too and made it known that she would not be leaving me. That's when I knew I needed to go to girls camp. I really wanted to anyway so it was a good thing anyway. Sunday afternoon President Baudin came over... and I knew exactly why he was there. He was going to ask me to go to Girls Camp!!! My little heart was so happy to be invited to go. He asked to sit down and talk for a while. I got a little dissapointed after a few minutes because he was just interested in how my family was doing...I was scared I wasn't going to get to go afterall. Then he looked me in the eyes and told me he felt prompted to ask me to go to Girls Camp and I could hear the angels singing. I promptly said yes! I knew he was coming! I told my mom to go pack those bags she didn't want to pack! Man I love being right!!! Mom's going to girls camp...ahhh I just knew it. I practically danced around the house until Tuesday finally came. I wanted to go up early with Dad Monday but I guess the doctors wanted to see me before I went...:) We had planned all the doctors visits around Girls Camp before because we thought my mom was going so it all worked out perfectly. They said as long as I did not roll around in the dirt I could go! I have never been so excited to pack for girls camp! I arrived with no responsibilities or restrictions! I had full access to the freezer filled with ice cream and could do whatever I wanted!! Can it get better? I got to walk around from cabin to cabin and take naps whenever I felt needed! I did not have to go the hike or clean a single bathroom. I did not have to plan anything either. It was the most relazing girls camp ever. I was just to try to make people happy! I like that job.
President told me that I would probably get a chance to speak to the girls at one time or another. He did not tell me for how long or what day or what topic. He just said I would get to speak. I am actually suprised that this did not make me nervous. I usually like to have everything that I am going to say written word for word on a paper because I know that I am a rambler and my thoughts are not always completely coherent... evident in this passage I assume. Wednesday night came around and I happened to be earing dinner with the Stake Presidency. This is when President asked me what I thought the girls were supposed to hear this year. I thought "wait, isn't that your job President...to receive revelation and tell me what to speak on??" I guess not!! :) I had actually pondered a bit about what I would say to the girls previously so when he asked me I jut said the word that was written the biggest on my thought list. It was actually the very last thing I wrote on my list and I wrote it in the very middle and then circled it. I know that it is what they needed to hear and knowing that has taught me so much. Looking back I realize that I can recieve inspiration when my heart is in the right place. I thought that I would be speaking on Thursday night but then President through me for another loop and asked me to speak that very night...in about 30 minutes. I realized that there was no way I was going to have anything written down so I decided to prepare my heart instead of a paper. I had a good prayer and then relaxed and did not think about it again until we pulled into the fourth level camp. I had one word to go off, "temples". The greatest thing is that I have had experience with the temple and more importantly the spirit was there. I was able to stand in front of all those beautiful girls and tell them what I felt the Lord needed them to hear along with my strong testimony of temples. I guess it went well because President asked me to do it again the next night in front of all the girls. I was a little worried about doing it again...how could I replicate what I felt and what I said...I had not prepared anything. So of course the next night was much different but I believe it was still special and most importantly, the spirit was there. I could see princesses that were one day to be queens and I saw all the potential in their eyes. Of course I bawled and confessed my love for hugs so afterwards I got a hug from at least 50% of the girls. I will forever cherish those hugs. I will never have an experience like that. Those hugs made cancer worth it...they made all my pain worth it. I will never ever forget my time at Girls Camp and pray that I can go again next year. Young men are amazing but young women...ahh just a little bit better! :) I think I connect with them better. I sure hope I can go again next year. This girls camp changed my life and I only hope and pray that I could have helped someone else. I know why I am still here...I can help people. I also know why I want to stay here...so I can help again and hug more young girls and have more experiences like I had this June. I wish I could have stayed forever. My life has much more meaning now. I feel like I am doing something good in this world. I feel like I can do something good for my Heavenly Father. I know he loves his daughters...I love them too.
Brownies are done... I will finish the rest of my adventures later!! :)
Yesterday was a wonderful "doctor day". 9:30 we went to Dr. Kumi (infectious disease) who said Tara can get OFF her antibiotics as of Wednesday. He wanted to put her on a pill form until her next MRI (next week) but I reminded him they make her SICK. Honestly, do these doctors not know how yucky people feel while on their meds? I made Tara tell Dr. Kumi how sick she's been while on this drug, and then he said, "are you sure it's from this drug?" Really, after almost 5 months of antibiotics, I think Tara would know what makes her sick... anyway, he said she can stop! Tara has been especially sick the last 2 weeks, and I, for one, and very much looking forward to NO MORE antibiotics and I know Tara will enjoy not having a bottle attached to her chest for 4 hours a day. (these are IV antibiotics) So, we did NOT make a return appointment with Dr. Kumi!!!
Next, Dr. Joganic (plastic surgeon). He put his hefty magnifying glasses on; looked at Tara's incision; and proceeded to take ALL the stitches out! All of them! This is the 1st time in 5 months stitches have come out without a residual, non-healing, scab on top of Tara's head (which equates to a hole in the head). This is the 1st time since February that we have gone to the dr, and not had surgery again within that month. Dr. Joganic said Tara's head had "completely epithelialized" guess what that means? The dictionary says "completely cover with epitheliam" which is SKIN. It's the outer layer of skin on the brain for all you non doctor people. Dr. said this was starting to epithelialize last month; but yesterday he had no worries about her head and reassured us it was healing. There were a few spots I was still bothered by; but Mr. Magnifying Glass said he wasn't bothered or worried, so that's good enough for us! Yea!!!! No return appointment for Dr. Joganic, either! 2 doctors out of our life! We really love our doctors; but when we don't have to see them, that is awfully good news. We don't even have to see Dr. Smith; but we want to - so next week when we go for the MRI (Tuesday) we will stop by and have him rejoice as well with the condition of Tara's scalp. He's the doctor above all who encourages Tara to "live a little." He told her at Lake Powell to "put her feet in the water and live a little." (although she didn't do that regardless - she was so careful about water).
I was pretty much dancing out of Barrows, and Tara had goosebumps. Last month she got all teary eyed when Dr. Joganic said her wound looked good and was healing as well. That is really music to her ears!!
So, we have Dr. Shapiro, Dr. Smith, and an MRI next week. We're trying not to worry - it's always a bit of a worry at MRI time - but we have to remember that faith knocks away fear, must remember and remember that. Tara has had some bad headaches lately, but I reminded her last night that Dr. Smith said those weren't a sign of the tumor reoccuring - her tumor would have to be large to have that happen; and with constant MRI's, he doesn't think that would be the case. Tara just can't have a headache without a little concern. Normal people can have headaches, but I guess Tara will never be normal - we all know she's extremely special, not just normal!!!
Saturday, August 6, 2011
My last post was somewhat depressing..... I'll have to admit I was NOT at all looking forward to weeks of antibiotics again. So, I'll start with the Sunday after that post. This was the 1st Sunday in July. Let's just say we have an amazing Stake President who really does listen to the Spirit and is where the Lord wants him to be when He wants him to be there! Sunday evening President Bawden stopped by our home (about 7 pm - I'm sure he had been gone since 6 am that morning) just to visit us. He felt impressed to come by. Tara & Josh were at our home for Sunday dinner that evening. Scott, Tara & I stepped in the living room to talk with him (we knew he came to see Tara) and the first thing he said to any of us was to me and it was, "How are you doing, Becky?" "You don't seem to have your usual sparkle." Tears instantly flowed down my face. Lynette Bayles calls this face of priesthood leaders the "Bishop face". Same thing happened to her when Scott asked her how she was doing one day - and REALLY meant "how are you doing?!" Anyway, President Bawden knows what it feels like to be the one watching a loved one suffer - he's BEEN there and I know he knows. We proceeded to talk for a bit - mostly Tara talked to Pres. Bawden and her spirit was shining through (nothing unusual for Tara). She was in a much better spot that I was; she was still positive and talking about how she's learning through all of this. Now I have to preface my next comments with some info. One of my husband's responsibilities in our church is to oversee the girls' camp for the 12-18 year old girls in our stake. It's held once a year. I told him this year I would go with him and help cook or do whatever was needed of me because Nate would be gone that week to EFY (Especially for Youth - a church camp) and I might as well get out in the mountains; be of some service, and be with him since there were no "kids" to mother that week. That Wednesday I had decided not to go to girls' camp. Tara was in her "couch" mode - feeling just too sick and blue to do anything at all; and although it would make Tara really really mad for me to stay home from camp because of her; that's exactly what I was going to do anyway. I know there are so many others who would happily step in and help in any way they could; but my crazy mother's heart just can't stand the thought of Tara feeling crappy without me trying to do something if I could. Too many times there is absolutely nothing I can do but just see her be sick; but even if that's the case; I didn't want to be away from her. Is this co-dependancy? I don't know... anyway, Tara had in her secret little heart wanted to go to girls' camp also; and I had thoughts about her going and was wishing the stake leaders would ask her to go; because I knew how much she loved girls' camp and I believed that there were girls there she could touch; but girls' camp is not something you just invite yourself to and say, "hey, by the way, I feel like I should come and be with the girls and help somehow". You have to have a job, a role, a reason for going.
President Bawden, after visiting with Tara, and seeing her great spirit shine forth, said that he felt impressed to invite Tara to girls' camp. The hugest smile broke out on Tara's face and she just KNEW it. Just knew that she was supposed to go. Bear in mind that she had been feeling really yucky after the June 29 surgery. President asked her if she could make the trip; and she said yes, but she wasn't too sure about leaving Josh. So, President visited with Josh also; and Josh was his wonderful, supportive, self and encouraged Tara to take this opportunity. Tara was all smiles, and this meant that I, as well, would be going to camp. Tara & I both received priesthood blessings that evening. From that moment on, Tara's strength steadily started to improve., and my spirits improved. I just needed that boost I received from the priesthood blessing and visit from Pres. Bawden. It's like the Lord was telling me He knew I was still there, still going along this pathway...
Tuesday morning we went to camp - 1 1/2 hours away. Tara's role at camp was to just enjoy the girls and do whatever she felt like. She wasn't sure how she would be used yet. She took some pretty hefty naps every day; but was eating better than she had eaten in weeks, and was feeling reasonably well. She was able to walk around the campsites back and forth without trouble. Wednesday came, and Pres. asked Tara to speak to the 4th level girls - these are girls 15 turning 16. These girls camped at a different spot that the rest of the group; so we traveled there that night. Pres. asked me to introduce Tara and "tell her story" and then Tara spoke. It was difficult for me to get through the "story" - it's really the 1st time I've told it to a group before and public speaking is NOT my forte. I shake and tremble and especially in a story like this; it's tough for me to get through. I can play the piano in church hundreds of times and rarely do I get nervous; but the minute I open my mouth I pretty much fall apart. But, somehow the Lord sustained me, and I "told the story." I said things I didn't think I had told Tara before; like what the pathologist really said the day of the report - how my daughter's life really was on the line. Tara spoke after me, and Pres. asked her to follow the Spirit and talk about whatever she felt like the girls should hear. She spoke of how important her temple wedding was to her - one thing she said was, "if the Lord took me home right after my wedding, I knew it would be okay because of my temple marriage." But, the Lord has left Tara here (as she said) and while she's here she believes she's here for a reason and that reason is to help others. I personally, hope there are billions of people she has to help because I want her on this earth for a very long time!!! She spoke of the importance of the temple, of God's love for each one of them, of temptations, of modesty, and other issues. Many tears were shed and many lives were touched. I'm sorry this is so long; but it's counting as my journal and I don't want to re-type again.
Thursday Pres. wanted Tara & I to pretty much repeat Wednesday's experience; except give it in the main lodge to all the rest of the girls. Thursday at about 3:30; someone came to steal me away from my cook's responsibilities in the kitchen. Tara was lying on the couch in the lodge unable to get up. She was unable to focus, walk, and she was "feeling weird." (which is a word she uses often). 2 nurses were around her and one bishop who is also an oncologist at Mayo Clinic. She was pretty much out of commission and I was wondering how on earth she was going to stand up and talk to all the girls that evening; but I had the thought, "if the Lord wants her to speak, there will be a way." Sure enough, about 6:00; she pops off the couch, eats a reasonable dinner, and gets her strength back. That night she stood by Pres. Bawden for about 45 minutes as they both spoke to the girls. After her talk, the girls started to line up to see Tara, and a line formed that ran outside of the lodge of girls waiting to give Tara a hug. She expressed her love for the girls and her desire to help them, they felt that love, and wanted to meet her personally. After the "line of hugs" Tara seriously SKIPPED out of the lodge. Skipped!! Coming off the couch to skipping - THAT is the power of love. My mother's heart was so happy for her. I love those moments when I see glimpses of Tara - the not sick version of Tara. That girl is something else, and girls' camp was such a tremendous experience for both Tara and the girls. I know the Lord is REAL, I know He loves us, and it helped me so much to feel that, as well as Tara. I got a little glimpse of eternity. There are people here who Tara can help with her story, so many people.... I want her to keep on reaching out and being needed so much on this earth that she won't be called back home to heaven.....can't stand the thought of her ever not being here..... that's the place in my mind I just can't go; even though my mind wanders there at times..... when it does; I have to push away the fear and remember that where faith grows, miracles blossom. Tara's afraid again today - she gets that way when she has a bad headache. I try to remind her she's been here before - and help her push away the fear also; but sometimes fear rears it's ugly head anyway. She's so sick today - those antibiotics are really taking their toll; but the good news is that WEDNESDAY she should be able to stop (at least that's what I'm hoping the dr's will say on Monday). Wednesday marks 6 weeks since surgery. I'll write more later... you still need to hear about vacation....