Let's take this slow.

 Holy cow I am slow. No swapping out keyboards because I am typing too fast too loud. my brain is firing on all cylinders but my fingers... are not. Hopefully that comes back soon too. my right hand is okay but this left friend, is struggling. 

Okay, let's start at tghe beginning and be more honest than most care to know. my pinky keeps going rouge and pushing the cpas button.... that's frustrating...hey, at least I hWE a Working pinky...I am not fixing that....you can read through it:). 

Pre op, I cried. There was progression, significant progression. two massive thumbs down. Smith was kind and was extra aggressive. for me. I blame the cruise desserts I continuously ordered. I am doing mental sprials constantly. WHEN I LOSE....PINKY....ehrn i close my eyes I can see the extra spots. I trty... shott this is hard. Keep trying Tara Lynn. When I close my eyes I see them. I have to keep blinking to my post op scan that has nice light saber looking lines through them. That is what I envision when I think of LITT therapy...just in there burning the tar out of all the cancer. When he looked in the microscope during surg he did see an active cancer cell. We are dealing with cancer...no hopes of a random occurrence anymore:(

My left arm (Fingers mostly) is struggling a little.

My left leg is numb in areas but I can still walk...,y leg drags a little but I think with time, i can learn to walk normal again. The kids loved  my electric cart at Walmart. I was telling Addie I felt silly for riding in one becuase I didn't look like I needed one... GraNT interrupted with  a'Mom, you have blood on your head in the front and back"...maybe I didn't belong on an electric cart...I belonged at home...hope I didn't scared the people of Walmart. I don't like feeling like a patient and wanted to get out though...I hate being left behind. 

So yes I look like I have been though the ringer and feel like but I have hope that I can return to my obnoxious self. THIS TYPING IS HARD AND YES I CLICKED THAT CAPS BUTTON!  I do have a mark from where they screwed me to the table and two cuts with stitches on my scalp. Other than that, I look fine. My eye... Smith Double-tripled checked when I said I could see out my left eye. It is amazing, he was most definitely surprised. Ah this is getting hard... dizzy...only right hand for now...  

we have oncology on monday morning. phone visit. treatment to follow. love you alll... can"t sit here... 

goodmight.

Family Fast.

 I am sitting here with my pre op bracelet on, index finger burning from my 4pm prick (mental note, don’t prick right before typing time) and stomach full. My goodness I eat a lot! When the eating window is open I am pounding food/ oils. I am getting better at the oils and my body doesn’t love them yet but it is supposed to adjust…hopefully that happens soon. TMI, move on Tara. 

We are fasting as a family tomorrow as a family and since you’re all pretty much family I wanted to invite you. Mom has been asking me to put this on here for a week but it just feels so weird to ask people to fast for me. I decided to swallow my pride and ask for it. If you would like, please keep my situation in your thoughts, prayers, and fasting tomorrow. Fasting is a part of our religion. Usually we do it monthly on the first Sunday. We’re invited to go without food for 24 hours snd it is always accompanied with prayer. We fast and pray for specific things. Tomorrow we will have Dr. Smith and my brain especially in our prayers.   I will have a biopsy on the table and hopefully they can see if is is cancerous before the LITT it up. 

I had all my pre op stuff done yesterday. We tried to get a CD of my scan so Josh could read it before but they did not copy it correctly and Josh could not open it. He is struggling not knowing what it looks like but we don’t have to wait much longer. 

Almost there. 

Keto update. 

I am totally rocking this! I am getting deeper and deeper in ketosis and my blood glucose is doing amazing. I have been 100% strict and it is working. I am so happy about it. It tastes better than chemo and I feel pretty good on the diet. All good things on the diet front. I have awkwardly sniffed Josh’s food on a handful of times… definitely not to the point where I don’t want it anymore:). 

I am inviting you to skip sugar next time you’re offered. You’re brain will thank you. You don’t have to do the Tara diet…this is my medicine but all could benefit from fewer carbs:) 

The count down is really on. Woah, biopsy is so soon. Deep breathes. In…out…you’ve got this Tara Lynn. 

I am here.

 Last night I packed my bags. My heart sunk a little as I made sure to get hospital stuff like socks and chapstick. Logistically my brain started freaking out about how I was going to feed myself while in the hospital but I tabled that freak out… One thing at a time. One week from today my Dr. Smith date will be over. It wont be a big deal…just one stitch but… yes, he’ll be digging deep in my brain. We will only do LITT if we feel like it is cancerous so technically there’s a chance we won’t do it but I always prepare for the worst/hardest and hope for the best…we will see. There is still a chance this is all nothing.. come on Tara… we have made a really big deal if it is nothing. No docs actually think it is nothing… it is growing in size and number but there I guess there is a chance… oh well… continue on.  we are going in Monday morning. We should know more soon after. 

The first thing I saw walking off the plane was a big Barrow’s brain cancer banner… that slapped me right in the face…brain tumor time… at least I am in the right place:). 

I came a few days early without kids to do a mini girls trip/ Costco sewing party. For the record. I beat Rachel and Mom at Cities and Knights! The fridge is now green and the oil stock over here is full. It is time. My stomach is still adjusting to the oils but it is getting easier. It is just a big learning curve. 

Anyway, I am here, let’s do this. 

Tara Lynn

Dear Anonymous

Back to our nightly routine. Josh logs on 10 minutes to 8 to start working... he is habitually early and I come here to my happy place, my safe space where I can let it all out. Kids are in bed, water bottle filled, meds taken, diffuser on, Pellegrino open, Goo Goo Dolls is playing in the background.. the day Celine gets back in will be a momentous day. I know when that day will come, it has to, when I embrace this but I am not ready yet. Let's get that path report so we can know exactly what we are dealing with.

Dear anonymous, I read your comments every night but I don't know who you are and I can't figure out how to respond to your messages. Sign your names. I like connecting. It was quite a feat to get to the end of that last novel...congrats. I will try to keep this shorter but you never know with me...:) This is my journey and you are invited to ride along but I remind myself that this my therapy, my safe space. I can be 100% Tara.. take me as I am... a  stubborn, longwinded, piece of work:)

Focus Tara Lynn...diet. 

When we met with Kris Smith he spent a nice portion of the appointment talking about the ketogenic diet. Not your Instagram keto diet... a medical ketosis. He told us the science behind it and explained that he believes in it so much that he follows it even though he doesn't have a GBM. In non-brain peoples vocab... pretty much you starve the cancer so new growth hypothetically can't grow and maybe the current crap in my brain could die if it looses its energy source. Sweet, let's do it but how? He gave me a 2 page piece of paper front and back with a name an number on the top of a Dietician to help me with nutrition. Tracey Smith... he told us she is his wife. Suspicion rose.. conflict on interest? Whatever.. if it could help, let's do it. It can't hurt right? So I make the phone call, she is pleasant enough and we meet at a park to talk about it. On the 3rd page of the packet it lists a $399 test that has to be run amongst other things that need to be done to "participate". I was extremely hesitant but definitely curious and willing to try. 

South of the Boat rentals at Tempe Town Lake. We meet and talked for over two hours taking notes, asking questions and trying to understand everything... Thankfully I have tried a few diets to loose weight and be healthier so a lot of the food tracking and macro stuff it didn't go over my head but I kept looking at Josh, wondering what he was thinking...is this girl for real? Does she know her stuff or is she one of those people that overqualifies themselves (don't think that is a word...it is now).  This isn't about loosing 20 pounds...this is about saving my life. I need her to be legit and if you were born in my decade...yes... too legit to quit. 

It all made sense to me. It all seemed right and good but I don't know all the science... 20% of it was going over my head. I don't know how the body processes every chemical and Josh doesn't know how to count macros our what net carbs are but together we both decided that she was not a fake and she knows her stuff. She was amazing. She told me I didn't need the $400 test at this point and might not if I can get into ketosis.  At the end of the appointment when we tried to pay her "Oh no, I don't charge any of my husbands patients". Yea, woman is for real and she just wants to help other people. She is a "pay it forward" type of person. They met in a science class at BYU, she studying to be a dietician and he obviously doing pre-med. They did the 500 year path to get to be a successful neruo surgeon and had kids along the way. When their kids were grown she went on a mission with her husband to destroy Glioblastomas. Her mission led me to her and she doesn't know it yet but we are besties. 

Okay this diet is hard core. Goal is to get into medical ketosis. It means finger pricks and special food, resisting food and making food. I spend 80% of my day either thinking, making or shopping for food. Smith said feeding myself would be a full time job...yea mmmhmm... have you met me?? I am super productive and efficient... when I want to be of course. I bet this won't be that hard. There are a million Instagramers who do it...This won't be that hard...bring it. Yea...ummm I was dead wrong. The resisting isn't that hard right now. I see sugar and carbs and see cancer... like I said, this is not about loosing 20 pounds. My motivation is sky high. 

The list of things I cannot have is longer than the list of things I can but I am doing it.. Cheese and all dairy is on the no list but I am all in. No looking back...No, I will not have another peanut butter cup and yes, last year I did the candy deal... that is another post...all it means is that I have not had any candy since last year... this overlapped conveniently didn't it?! Moving on. 70% fat …good fat... not your normal fat. 25% protein of course, special protein...more protein than that will break down as sugar, of course it will... and 5% carbs. 

Green vegetables and oil are my friends. She told me to cook 2 eggs in 4 tablespoons of grass-fed butter. and then put more oil on the top... ummm my teeth are slimy...I can't... it is toomuvh butter.. too much oil.. too much. I cant...wait yes I can, and I will! I did. Friends I have cooked all the instructed veggies... the green beans and brussel sprouts in the air fryer and per instructions.. poured all the oil over my meal and then added a tablespoons of raw oil to it!!! I have cooked spinach into my eggs...still struggling with that one. I have eaten all the things and easily said no to the rest. I am doing it! I am drinking more than half my body weight in ounces of water...I feel like I am drinking the neighborhoods body weight in ounces but I did it. Tonight I took a ketosis test... and I AM IN KETOSIS. My body is creating ketones and I am fighting. I do not have to wait until the biopsy and path report. I don't have to only take poison to fight! I can and I will. I am!!!! Yay  Tara Lynn... Keep going. 

Love you all you anonymous friends!

Until tomorrow. 

Tara

Surgeon Update... sorry it's long...

 Okay, we met with Dr, Smith.

Pre surg scan on the 20th and biopsy on the 23rd. 

Now onto my therapeutic rambling. 

Meet with Kris Smith on Tuesday.. He knows his stuff and we feel he is the right man to do it. I was a little bugged that he only mentioned 2 of the spots and not the rest... when we discussed this he said we could do a full surgery instead of a biopsy but we are already dancing far too close to my optic nerve. There is a chance that I will lose my peripheral vision in my left eye already but opening up and taking more of the lobe increases the chances of further damage. We will do LITT therapy on the biggest two spots and then hopefully chemo takes care of the rest. Ahhh... I hate that word right now. HOPEFULLY?!?! I don't want hopefully when it comes to tumors in my brain... I guess hopefully will have to do for now. humph.  We will know more when the path report comes back. It could take 5 business days...hopefully less...eww there is that word again. 

We still sent all the stuff to USCF and I went to tumor board there on Thursday... We anticipate hearing from them on Monday. My gut feels like Dr. Smith will do it.

The biopsy will not be a short procedure like we thought... I will be under for a while...a lot of the time I will be in machines.... the biopsy needle is tiny and doubles as the LITT administer-er...it is thre tool that does the LITT therapy. Anyway, They have to be super careful and I am all about long scans while I am under. 

The past 4 MRI's have been really hard on me physically and emotionally...mostly emotionally. I tend to cry a lot and get scared then my heart races and I start to breath heavy. Then I start to freak out because if I move at all, they have to do the sequence again which means more machine time which I don't love. I try to tell myself to freak out in my brain, not my heart/lungs, my eyes start pacing frantically looking in the mirror for a count down clock to tell me the sequence is almost over but the 3T scanner I have been in recently, doesn't have a count down clock. So I try to find the tech, anyone...is this almost over?? Can I get out of here? My arms are numb, the back of my head is in pain and the contrast they just injected makes all my teeth feel like they are being pushed out from the inside, my arm with the IV is on fire and I just want it over but if I push that button, if I squeeze that ball, it isn't over, it just starts from the beginning...I can't stop now, "I am Tara Bodrero, I can do hard things. It is almost over Tara Lynn (why am I shaking typing this?) don't stop now. In through your nose, out through your mouth but don't open your jaw...you CAN do this!!" By this point my jaw is clenched shut, my eyes too. After a few deep breaths and I open my eyes. Josh is there!!! He is in the window!!! I can see him!!! I will be okay, Josh is with me. heart rate and breathing slow. I feel peace, feel calm, I feel okay, I feel love. He loves me, he will take care of me. By now I have tears dripping in my ears and dried to my face. (and yes I am crying just thinking about it and how much he loves me. I make it through and he meets me as I get out with a Josh hug that cannot be replicated. 

Josh. Amazing. Amazing that he ended up in radiology and can be there with me...well kinda with me, a window away. The techs can hear and see everything I do... I usually choose Celine Dion to have played in the headphones during the scan. When he walked in to the tech room they asked him, "Did your wife chose this or was it random?" to which he replied, "I have no doubt she chose this.". Celine and I are in a bit of a fight right now and it kinda triggers me a bit...still love her, just give it time. She won't be joining me in a machine anytime soon. Back to Josh :) 12 years ago, all he could do was google and even when he did, he didn't understand everything. Now, he knows it all. He understands everything and will make sure I get the best treatment out there. He has stared at those spots more than anyone and has access to a myriad of neuroradiologists from all over the country that he has looking at this. When I call to get an appointment or talk to someone I get the "your call will be returned in 24-48 hours" crap. He gets to press 1 and talk to someone immediately. I like my cute doctor representative.

My initial cancer diagnosis sent us on the med school route. We must have been unimaginably naïve... Tara has cancer, doctors say she doesn't have long and it will be hard...great... let's embark on a 10+ year journey that will be filled with exceptionally hard years while going through it... Come-on!! We did that plus a surprise baby, 3 more planned babies, and now have 18 months left. Selfishly I feel like I have done a lot of the hard part...don't trip at the end girl! My heavens sake Tara Lynn...you have worked so hard... keep fighting and enjoy the fruits of your labors! 

I am on a few doctor-wives Facebook groups and they use the acronym IGB... it stands for It Gets Better. That phrase has always bothered me. Many women live for the day they are done, they live for the paycheck and the day they are done with training but in the end, it doesn't get better...they didn't enjoy the time going through and many end in divorce during the IGB time. Even if my time is up before the IGB time... I am happy here. I am happy with our home, our children, our community and by golly... I am happy with my spouse! I don't need him to be done and make more money...I am living my dream right here with my 4 kids they told me I would never have and an amazing husband that I cry regularly about because I love him so much. We have built such a great family, stacked the deck in our favor, chose the harder path over and over and over again to get here...We just drew a wild card and I would like to rip it up and burn it but unfortunately. that is not our lot. This will be the next year to 18 months of our lives and yes fellowship comes in June...we are supposed to be moving to Duke unsure if the treatments are working...why so many big kid decisions all at once??

No,  I am not done...! Josh just asked me if I was:). UNM has been amazing to him and gave him a workstation so he can stay home with me incase I need it. He has to work nights this week so I am trying to stay up a little and he can hear my keyboard typing away. I have to face another wall and can't see his screen for HIPPA stuff but he can hear my fingers  tip-typing away.  

I have started a new diet and have loads of thoughts and feelings about and would actually like advice but it is time to take my meds and go to sleep. My body needs sleep. Tomorrow we can talk about the diet. Love you all! Congrats on making it to the end. Thanks for fighting with me and making me feel loved. I do read everything and appreciate it all. 

Tara Lynn

Honesty

Welcome. Welcome to my. 5 am processing time.Luke started coughing at 4:45 and sleep hasn’t been my friend lately. My brain just won’t turn off. I lay in my bed and spiral. This morning instead of letting my tears silently soak my pillowcase, I got my booty out bed, grabbed a minky blanket and came here to process. We will see how it goes. Brutal, unfiltered, honestly where I get to feel what I feel. 

Today…again… I feel scared, panicked, and afraid. Part of the way I process is by letting myself go to the deepest, darkest place, to feel all the feels and then to try to build back up to hope. It has been a very rocky road this time. I try to build and the fear just shoves me right back down. 

Faith and fear can’t coexist. I am struggling… fear is winning and I just don’t have enough faith right now. Yesterday I lost it during the Sacrament hymn when the lyrics,  “ Yet, if thou wilt, I’ll drink it up. I’ve done the work thou gavest me,” came up… I lost it… I could not sing it. I am not there. I was the first go around… I really was. I AM NOT THERE right now. I know it is where I need to get to but I cannot right now. I will not accept any outcome. I need to be here with my babies. I will not accept leaving. Not right now. Truthfully, I don’t need to accept that right now because we are still wading in a ton of unknowns. We don’t know this will end in my nightmares… all we know is the next step is a biopsy to get a path report. I will meet with Kris Smith tomorrow to arrange the biopsy. Biopsy’s don’t scare me, meds don’t scare me, being excruciatingly ill, does not scare me… I welcome it… I will beg for them to make me as sick as possible! Leaving my babies, scares me. 

To all those dealing with a terminal illness, knocking at the same door. I feel you. I know what you are going through.  I know the all-encompassing pain that takes over controlling your breath and plunges you into a deep dark hole… physical pain can’t compare to the emotional pain that builds when processing this.  A few nights ago, Josh held me as the emotional pain took over again . He didn’t tell me everything would be okay, he didn’t tell me to be strong or to have faith…, he just held me and let me fall apart on his shoulder. No, this is not the first time it has happened…it’s the millionth… he just held me and let me cry. Who is holding him? Who is helping him in his sleepless nights? A few nights ago we both tossed and turned, each knowing what was on the others mind… it hurts that I don’t know how to help him. Don’t forget him. I do not know what he is going though, I don’t understand his pain, I do not know how to help him. Know he is struggling too and don’t forget him in your prayers, He is the greatest man I know. He  has been through so much. He is one of my rocks… who is his? He has got more gray hairs than most his age and vast majority of those hairs… are all mine… yes, our vocational training route has definitely contributed as well but most… are mine. It is a good thing he looks so dashingly handsome with all the grays. We have built the most amazing love over the past 14 years. Okay, I had my pity party, now let’s pick up, find some good and continue on. Josh is pure good. He will not be happy with me for posting about how amazing he is but he is so awesome that he will get over it and love me anyway. I could go on for hours and hours about how amazing he is but I love him and will stop here… no promises on another day though… :) 

Okay, keep finding good Tara Lynn… 

it is only 1 more day until the surgeon visit

M&D currently have 7 extra people in addition to my family of 6 sharing their address so there is always something going on. Quiet isn’t my friend right now and it isn’t quiet here often:)

A lot has advanced in the last 12 years in the GBM world and I may get to take advantage of new treatments

Josh will make sure I get the best treatment possible

I have 4 healthy, happy kids who love me. 

I have Josh

I have family

I have you, my army. 

I have a healthy body right now… no more moping, get up, have fun, make memories, laugh, eat, play,

I have so much. Let’s leave the fretting for tomorrow morning and enjoy today. 

There, I feel better. Thanks for processing with me. I know I posted last time and just walked away. I needed time away, so I took it. Know that I read every comment. I feel loved and supported. I have looked into printing the blog and I think it is an investment worth doing. There is an option to include comments so I went back and reread most comments from the first go around. It is humbling. I think I will include them in the printing. You are such a big party of my journey. We can do this. I am ready to fight. 

Here is my head, do what you need to it… here are my veins, poke when needed and Walgreens is my pharmacy… send me the drugs… I will take them. I am ready. Let’s go.