Thanksgiving!!

Becky here.... Tara is being a delinquent writer... so you'll have to settle for me again with news.  I have so many awesome people who tell me they check Tara's blog for information; so once again; I'll supply some info from my end; and later I'm sure you'll hear from Tara.....  I have to first apologize to Tara - (I kindof did in person already) and "sort of" got her permission to post an email I intercepted that shows us all another glimpse into the wonderful soul of Tara.  She left an email up on my computer; when I went to what I thought was my inbox; I read this wonderful interchange between Tara and a new friend she's met online through this journey.  So, I'll paste this email in here; then give you the update on our lives..

This is Tara in response to her friend who wants to use some of Tara’s story to a youth group (I think) where she lives in NYC.

Things are going really well actually. I have been a bad blogger but this past week I did get my port out of my chest and there were a few blessings in disguise that we worked through... we learned a lot and I am now port free! It is a big step for a cancer patient to be port free. I have been seizing since surgery but the seizures have led us to new questions with new answers that have brought more comfort especially when it comes to our upcoming cruise that we just got cleared to go on! :) Heavenly Father has his eyes on me and knows my specific needs.

I know this is probably more than what you asked for but when I think of missionary work I get so excited. If only they could feel what I feel, if only they knew Heavenly Father like I know him. Sometimes I get sad when I think about all those out there who do not feel what I feel and know what I know but then I get glad when I realize that they can know. I am so happy your church is doing this

Questions Tara answered:

About how many rounds of chemo? My treatment was supposed to consist of 30 initial rounds that were to be taken at a lower dosage (120mg) while on radiation 5 days a week for 42 days. When that was complete (last summer) I was to multiply my dosage by 2.5 (I think...the math is a little weird b/c the meds only come in certain sizes) 350mg and take those treatments every month for  5 days a month. The total treatment time was supposed to last 14 months. I,of course, had to have the trial chemotherapy as well as the traditional chemotherapy because of how serious this cancer is.  I had to stop the clinical trial in March because I went too many weeks without a dose of the chemo due to my brain infection and resulting surgeries. My brain surgeon would not let me have the chemo because it was interfering with my healing and since I went more than 6 weeks I was thrown off the trial. Now, since I do not have my original tumor...I cannot get back onto a trial drug unless a tumor grows back. Trial drugs are really big things to people like me. We are pretty much willing to try just about anything. Sorry I know I tend to ramble.  Radiation treatments? I did all 30 and am proud of it! :) 5 days a week Six surgeries? Yes, 6 brain surgeries. Dr. Berger #1 San Fran and Dr. Smith @ my home away from home Barrows Neurological / St. Joseph’s Hospital for #2,3,4,5,6

Why Come What May and Love it??? Is it a theme or motto? Not quite sure to be honest. Really it was the first thing that came into my mind. I had loved Elder Wirthlin's talk from general conference so much and had tried to already implement that principle in my life so when this stormy day came around and I thought about what I was going to do...the answer was clear. I was going to love it. Even if "it" was brain cancer, surgery, chemo, hospitals, etc. He shared a story in his talk about how they learned to laugh and when I get down or sad...I try to find a way to laugh and when I laugh...it makes it more easy to love. When I can make the nurses happy or those around me happy or smile...I can be happy and I can love. Come What May and Love It hopefully has become a part of me. I do not know what the Lord has in store for me. I love my experiences and my hard times even more now because you emailed me! :)  it always makes me happy when I can help people and I know that I can help more fully because of my trials. Thank you trials.:) 

How have you been able to be grateful during the hard times? How has the Savior played a role in your outlook/ability to be grateful/happy?? Oh well now you are practically begging me for a 6 page paper...I will try not to give you a list...I could go on and on. This is where I get extremely passionate. This and the Temple which to me go hand in hand. Let me start with the second question because that is my favorite of them all. The answer is a sure yes. I always talk about not being the person that I was May 14, 2010 and how grateful I am for that and I think that this is one main reason why. I have a better knowledge of a lot of things...or at least I feel as if I do. When faced with a trial like cancer, unfortunately, one of the first things on our minds is death and separation. It is scary. I don't think that any religion or belief could sheild people from that fear but I do know that the Plan of Salvation has helped me understand better who I am and where I am going when I do die or when anyone I love dies. I have more peace and less fear because I have a knowledge of the Plan of Salvation, The Eternal Plan of Happiness, Yes I am happy! 

-Another role. He was a great example. An example of service. They say that it is hard to think about yourself when you are thinking about others. Well, I am not going to go against it! I find that when my back is really hurting the very best way to get it to stop is by giving Josh a back rub...I swear it works every time! :) Christ was a great example of prayer and this is where I have needed him the most. There are many quiet times in hospitals or at home alone when I know I need to be happy. I know prayer is the key. I can pray and when I do it helps. It does not alleviate pain. I will not go tell people that prayer is a pain killer and that it will solve all the world’s problems but I think that when I pray I turn my heart and my mind away from “ Say Yes to the Dress” and back to my Father in Heaven and when my heart and my mind are in the right place I always tend to deal with the pain better. I have comfort. I have peace. Then I become grateful for those times that I realize what the power of prayer can be. That is how I can turn bad into good. Turn pain into pleasure. I learned that day how powerful my prayers were at the second you need them. Yes, the pain was there but I could deal with it better. I know angels have been with me. We are promised that we will not be left comfortless. I have never been left comfortless but sometimes I have to stop whining so I can hear the comforting words or hold still so I can feel the comforting blanket. He will help us, if we let him. Been through that last week with the fertility thing again...

Okay sorry I told you I would write a novel!!!! Sorry my answers got so long...I just get so excited.  

 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.

The week after all this; Tara did indeed start to feel better and let me tell you; I know how happy I am when Tara seems somewhat normal - I can only IMAGINE how happy she must be!!!  For one whole week in a row she felt pretty good - she even exercised 2 days in row - imagine that!!  I was holding my breath, hoping this would continue, thinking to myself - "could we possibly be finished with Tara being sick?"  I didn't want to get too hopeful, because too many times Tara has just been too sick.

Tara and the rest of us were all so excited for Thanksgiving for many reasons - and that gave Tara something huge to look forward to; which may have helped in her feeling so good for that week.  Rachel was coming home; and many of the Schlappis were coming for Thanksgiving - that is Scott's brothers and sisters.  40; to be exact!  Needless to say, it was a PARTY here for 4 days.  Rachel came the weekend before Thanksgiving which was AWESOME especially because we got to be here when she got engaged!  Yes, it's official; my little Rachel is not so little anymore and she will marry Nathan Anderson on February 18th in the Mesa AZ temple. So, much of our time with Tara was spent with Rachel planning her reception.  Very fun stuff!  Tara spent as much time as she possibly could with Rachel while she was here.  Rachel came home and just spread some sunshine around our whole home!  We had an Iron Chef competition and Tara actually cooked with Josh some very tasty treats - which was impressive coming from a girl who has lost her appetite for the most part.  We had some great family time together and then the BIG family showed up by Wednesday.  Tara partied hard - stayed up late playing ROOK, and of all the crazy things, went Black Friday shopping again this year.... I couldn't talk her out of it.  All the Schlappis came to see Tara, and she was not about to miss out on anything!

So, after the dust settled, company left, Tara did indeed crash - literally.  She had a full seizure (the arm freaking out again) Sunday morning.  So, since Sunday, she hasn't been herself and now she feels sick again.  My personal opinion as a mother, is that Tara pushed herself too hard; but Tara doesn't think that's why she had a seizure... but neither of us will ever really know.  I just have to wake up the next day and hope Tara makes progress toward the way she felt a week ago.  That is my prayer and since she felt that good once, I believe it can happen again.  It was beyond fun for me to see Tara have some energy and excitement and so many smiles.  Thank you Rachel and our other visitors for helping facilitate the happiness.

I have learned to enjoy the moments that make up my life.  One of those was last week when 4 out of my 5 kids and their spouses were together enjoying Iron Chef,  and enjoying Nate's first basketball game on the JV team. As I looked at my family seated on the bench in front of me at the game, I just couldn't help smiling and smiling as they cheered on their brother.  We really missed Travis.  He didn't feel it was practical to fly home for 3 days when he would be joining us in 3 weeks for the cruise.  Anyway, it's moments like that which make up the memories in my mind that get me through the hard times.  I hope we have a memory next month taking that trip together, but as Tara says, "come what may and love it"  - if she feels too sick to go; we will look forward to going another time and that will be a future memory to cherish.  

I have wished this before, and I wish it again - I wish I could be sick this week instead of Tara - I wish I could take the pain and sickness away.  Only Christ has that power and only He could do that for all of us.  What a priceless gift.   I have to remember to be thankful for my energy and health so I can keep carrying on for Tara and other family members.  I have been so blessed with good health through all of this.  I dream of the day that Tara has good health - I know it can happen, it has to happen!  I saw a glimpse of it last week.... had to pinch myself every day when she acted like she felt fine...... and I better be careful on this blog or she will try to fake it to me (as usual) and pretend like she's feeling good so I will be happy....

May you all enjoy this December and cherish those who mean the most to you at this time of year.  Don't be so busy that you can't stop and enjoy your family.  I am cutting out many things this year.... no Christmas cards (but a wedding invitation in January will suffice!) not many gifts for the family (the cruise is our gift - the gift of being together) and I may not get homemade goodies made; although I would still love to do that... however, I must get decorations up earlier this year than last year - Tara wants them up early, so Thursday is my goal to accomplish that task.  That's early for me!!!

Love you all!!!! 

Tender Mercy today

Becky here.    I am in my usual spot next to Tara's hospital bed watching her sleep.  Trying really hard not to sniff, be on the phone, or do any noise that bugs her.  Typing may bug her soon - we'll see.  Today is port removal day!  Tara was so excited to get the port out.  We visited a part of the hospital we haven't seen before (new since last year when the port was put in) and the nurses were all so kind and helpful.

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.

i am back! :) Venting Sessions and Best Sunday Ever!

Here I am, I do not know why I have not written... pinterest maybe? out of the habit? regardless all bad excuses and I am back. We had good news from the doc last week as my mother has probably updated. The cruise is most likely going to happen!!!! We solved the mystery of the missing passport and they are all safely in one place now. Let me get straight to the point of all my worries for the upcoming cruise that I cannot address to my mother directly so I will do so thusly. (now that is a word)

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.
Tara