Tuesday, May 24, 2011


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

Really as an update on me.

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

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

Jan.= ER with breathing problems
Feb. 15 = surgery #2
March 25 = surgery #3
April 25 = surgery #4

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

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

Monday, May 16, 2011

One Year Later

One year ago I had no idea...

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

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

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

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

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

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

Sunday, May 15, 2011

One year later....

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Now for the newsy update...

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

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

Thursday, May 12, 2011

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

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

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

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

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

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

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

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


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

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

Faith meds first…then Dr. Meds.

Take that silly glioblastoma.

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

enjoy...Chol is hilarious