Back from vacation to massive laundry, marathon cancer appointments, and making it home

We flew back from California last Sunday, and after some debating decided to send the boys home with my parents since Josh had appointments starting Monday morning.
Again, no secret as to how much I LOVE laundry, and one of things that gives me anxiety about going on vacation is the fact that our family is growing and I have to do laundry EVERYDAY to keep it from getting out of control.
We came home with EIGHT loads of laundry. Count them, yes, eight loads for a six day vacation. I managed to squeeze one load into another load since there wasn't another washer close by. But, all the loads got done at the same time and I decided that in my next life, I want to have multiple washers as to be able to do massive amounts of laundry at one time. Maybe it's my lot in life to open a laundromat where I can reserve a row of washers just for me.

See? Doesn't that look like heaven? The chance to get it all done at the same time?

Monday while Eliza and I were waiting for Josh to get his lab work done, we met the most awesome people. One man with colon cancer and mets all over was positive about his Stage IV cancer, and ironically his F-bomb cancer shirt didn't offend me the way the F word usually does. In fact, as bad as it sounds, it was relatable, and I got a kick out it. I told him and we got talking. He is awesome. Dov, you inspired me. After meeting you, I will never be the same. I met a guy, Max, with melanoma who is hopeful at the opportunity to be in remission, two more women, one who is a cancer survivor and one still battling. I also met a woman who has just barely been going through all the emotion and trauma that comes initially with her husband's cancer diagnosis. I literally saw myself in her eyes. Lou, if you are reading this. You are not alone. I hope you are feeling better than you were a week ago. My heart goes out to you. I KNOW exactly how you're feeling. It isn't easy. Our hearts and prayers are with all our new friends from the Huntsman. I particularly want to share one blog from Carri, who is a cancer survivor hoping to adopt. Please check out her amazing blog!! It is called From Healing to Hope.  

Here are some cutie pie picture of Eliza watching all the action and later waiting patiently at the Huntsman's infusion waiting room. Poor baby is going to think that hospital and clinic are her second home especially with all the attention she gets every time we go. They have watched her grow and when they know we are coming, there are always a handful of specific nurses that come to see her.

Watching our new friend Dov as he was talking to his mom.

Passing the time reading a book.

Monday night, Josh had an MRI and then Tuesday morning an appointment with Dr. Colman and staff. Then, that afternoon he had an infusion for the Avastin study. The appointment went well. Josh's MRI didn't show any changes which means we can chalk up another few months for stability. I am pretty sure that every time we go Dr. Cohen and Dr. Colman are more and more convinced that I am a complete nut-case, but seriously-- I can not silence my concerns. Remember how I said that I am not the quiet type? I think it embarrasses Josh, but I am not sorry for it. He is my husband, and it is our family, our children, our life, our future. 

I want to live a long and happily-ever-after life with Josh. I have never noticed so much how wonderful it is to see a couple in their golden years sitting together at church or walking down the sidewalk hand-in-hand. I guess I always took it for granted, as I felt that it would inevitably be Josh and I one day. Now when I see it, I notice the sweetness and rarity (especially with divorce rates perpetually on the rise). My hope is that one day I will be able to sit in church with my aged husband, admiring his gray hair as he puts his arms around my hunched shoulders. In an effort to achieve that, I have to make sure that the doctors are aware of anything that might be relevant. If that makes me a nut-case and embarrassing: so be it. Despite all my questions, the reality was that he is still stable. And, ultimately, no change is good news. 

After our long couple of days at the Huntsman we were finally able to come home. It felt so good to finally be in our own home and sleep in our own bed. As great as vacation was, I was happy to be here. Probably more-so because the laundry was all done! ;)

The Healer

I keep getting asked how I feel.

Really, I feel like crap. (Hmm... I use that word often and hate it when my kids use it, so I guess I better rethink that particular part of my vocabulary. But for now, substandard just doesn't seem to deliver.) 

In all honesty, I do feel a little better after three days of steroid infusions than I have felt in the last six weeks. I still have two more infusions, so hopefully things will just get better. It all started with the annoying vertigo that just wouldn't and hasn't gone away.

Several symptoms have been added to the vertigo. It was getting to the point that I felt like I was declining everyday. I still feel like a crazy person, but the steroids are helping. The numbness on the left side of my lower face is gone. And while my vision is still often blurry and peripherally double, I can at least see peripherally out of my left eye now. No more big black block. My mouth still feels like I have been to the dentist on the right side, my cheek is still a little zingy and I am not remembering things as well, but at least I am walking a little more normal. I am not stumbling as much. At least not like the day I fell down the stairs with Eliza or when I went in for another MRI and the technician asked if I had taken something before I went. Oh brother! Did the thought not occur to him that I was coming in for another MRI on my brain only two weeks after the first one? In his defense, I did run into the wall!!

After four MRI's, three blood draws (for various tests), two appointments with specialists, a lumbar puncture, and the input of five of the Huntsman Cancer Institute's tumor board neurologists,  it is pretty certain that I have Multiple Sclerosis. (Here is a little information video for a quick MS 101) Fortunately, early treatment is the most successful. The treatment options are mind boggling in and of themselves, and there are so many alternative treatments to consider as well. There is help. I will be fine. I am anxious to feel a little more like myself again and not so pathetic and crazy. (Because that is really how I feel, aside from the symptoms being super annoying, I have been frustrated that I couldn't just make myself get up and live normal everyday life. I would think long and hard about whether is was worth it to get up and shower and fix my hair and then feel worse later in the day. Lame, I know. I wish I could explain it better, but really the best way I can explain it is that I have felt like, note the afore mentioned, crap.)

A huge part of my struggle has been that it feels like my kids deserve better. They deserve to have one healthy parent. One who isn't "neurologically diseased." I think the worst was after the day that the double vision in my eyes became more permanent. I had spent the majority of the day lying on the couch. Josh was putting the kids to bed and explaining that I was sick and didn't feel well. Kimball started to cry. He was really upset and worried that his dad was going to die and his mom was going to die and that there would be four kids living alone in our house and that he wasn't big enough to take care of Eliza. Not only is it sad to hear his concerns vocalized, but to know that such a heavy burden was weighing on his little seven-year-old shoulders. He shouldn't have to carry that. None of my children should.

Still, even in saying that, I am reminded of the distant feeling I had in the temple after learning about Josh's tumor. I was told that it would be hard, that it would hurt, but that ultimately... everything is in His hands and that it would be okay. Christ is the Healer. He is the one who can heal us from physical infirmity (if it is according to the Lord's will) and He can heal our aching hearts when life is hard. That is His purpose. To be our Savior.

I am going to post another song. "The Healer," was written by one of my close friend's twin sister. The CD is called, Praying for a Better Day by, Tari Van Tassell. I looked it up and you can buy a download here.

I know that I keep talking about songs and putting them up on my blog, but really... music is one of the best ways to feel the Spirit, and it has been healing to me in so many different ways. Please take the time to listen to this song. You will not be sorry. It strengthens my faith and testimony of Jesus Christ every time I hear it. In recent weeks, it has helped me to see that while a complete physical healing may not be possible, a spiritual and emotional healing is really what I need. (I spent the time to make the video myself, googly eyes and all, so... go easy on me! It was the only way I could figure out how to get the actual music on this post.) 

She gave to us, and wants to give to you! Don't miss out!

I have an amazing friend that has an awesome photography business. We have known each other for like a gazillion years and she has always been very talented! I love her guts!
When all of the craziness happened with Josh, she reached out to us and offered to take our family pictures and to GIVE us, yes I said GIVE us her top package. She also designed our Christmas cards for us (which were beautiful). She has just launched her new blogsite and is offering a to-good-to-be-true giveaway!!! You have to hurry to her website and check it out. You won't be disappointed. She does a great job and I get compliments on the pictures she did of my boys almost 3 years ago ALL THE TIME!! Check it out!

amyjophoto.com

I am not the quiet type

I thought since I mentioned Josh's MRI was on the 4th, that I better post. I haven't had the greatest week (due to a handful of things) and I hope that won't reflect in tone of this post.
Josh's MRI was on Tuesday morning and then we met with Dr. Cohen and Dr. Coleman at the clinic later that afternoon to discuss Josh's well-being and the scans. We left the office feeling good and confident. The  verdict was another stable month to chalk up to success.
Wednesday morning Josh had an infusion where we received the formal MRI report that stated change in two different areas and that they looked like disease progression. So, I went into survival mode. I started reading all the other reports to compare the wording, compare the jargon, compare the emphasis of previous scans. After finding consistencies in specific phrases and words I was able to gather what was a description of location or what was the name of a part of the brain. I understood well enough to know what the report said: They (the radiologists) believe the tumor to be growing. I was confidant that my first understanding of the report was right.
You better believe I was on the phone dialing the nurses to ask them about it. I told them:
"I am not the quiet type to just wait around for something to happen." 
I told them I didn't want to be naive, that I don't want to be caught off guard, and that I always wanted to hear the absolute truth even if it was ugly.
The nurse assured me that she would have the doctor call me back. Hours passed. No phone call. I called again and left a message but then had to leave. Dr. Cohen called while I was gone. Ugh.
I called and left another message this morning before I had to take Eliza to the doctor. (Poor sick baby) While I was gone the nurse called. I called. Finally later this afternoon I heard from both Dr. Cohen and Dr. Coleman. They agree that the places the radiologist flagged has changed, but feel it is not significant enough to call it tumor progression. They said they don't use that particular series to diagnose progression, and they would just watch it at his next scan in 10 weeks. They couldn't say it was nothing, but felt Josh is "essentially stable." I am now of the opinion that stable and essentially stable have two different meanings.
So there you have it. A bunch of ambiguity and uncertainty. Conflicting reports and a not-so reassurance from the doctors. The positive side is that, at least for now, the doctors feel like it is not progressing, and that is good news.

Held

This song was posted for me on Facebook by a sweet friend who I have had the privilege of knowing for about 23 years. I can't help but think of our own circumstances. And then of those whom we have met since Josh's diagnosis last year. I was heartbroken to learn that a woman who I looked to as our beacon of hope passed away, and I can't stop thinking about the family who is aching for her now. I can't stop thinking about another couple, (who are the same age as Josh and I) struggling with the same disease and yet who are coping so well, and teaching us.  I can't stop thinking about my friend who I talk to EVERY day who lost her husband about 18 months ago and how she has taught me so much. How strong she is.  How sometimes praying feels ambiguous, but that someone REALLY hears.  How sometimes life seems so unfair, but yet we are all being held in His hands.

Meet the tumor, thank you

First, I am posting a picture of what the tumor looked like in November and then maybe I'll post another one after Josh's MRI next Tuesday.

Secondly, I hope that you will indulge me in reading my Christmas letter. I tried my best to send it to everyone who has helped us, but so much of what has been done has been anonymous and, let's face it... I am not perfect and after I used up all I had ordered, I kept thinking of more people I wished I had sent them to. So... this is also a late Christmas thank you.

No duct tape and silly putty!

Josh went to the ENT today and he assured us that there wouldn't be any major complications from the perforated septum. Surgery, like I had read on the internet, would most likely be unsuccessful. But, they can put a shunt/splint thing there if needed. For now, he is just going to try antibiotics. I can't say enough how impressed I was, again, with this doctor. (He is the same doctor that took care of poor Benson when we went through all the crazy ear infections, tubes, mastoiditis, and then the PICC line.) He went above and beyond to make sure that we understood what was going on, how it may or may not be related to Glioblastoma, and even took an active interest in our family and our situation. So... everything is what it is. Not a big deal, in the grand scheme of things.

So, while I did dream that Josh had a hole in his nose, I guess I won't be trying to fix it the way I did in my dream: with anything I could put my hands on- including duct tape and silly putty! Ha! (Seriously, if only you all could visit my dreams.)

Josh has another round of marathon appointments on Tuesday: MRI, blood work, Dr. Coleman, infusion! Here we go again!

Perforated Septum

Something new to add to my list of things that make cancer dumb (aside from the obvious):

A perforated septum. What's that? Well if you stick your finger in your nose... haha... you are doing it now, aren't you? You can feel a membrane that separates your nostrils, right?

That is your septum.

Josh no longer has one. It's just a gaping hole. He told me there was a hole. I didn't believe him. I got out the flashlight and looked in his nose. Sure enough. Big hole. Nothing separating his nostrils. Holy crap! I had to google, of course and found out that it is called a perforated septum and that it is rare but can be caused by trauma (like his surgery), cancer (which he has), or Avastin (the drug he may or may not be getting as part of a glioblastoma study).

Awesome.

The upside? He says he can breathe better. Ha!

The ironic thing? I had a dream probably a week ago that he had a hole in his nose.

Follicu-whatis?

Before I get to the actual post, I just have to post these pictures of Eliza for two reasons:

1. Um, they are adorable and of course I want to share them. My friend Mindy took them and just brought me the disk the other day.

2. My camera is broken and so I honestly haven't had pictures to post. I have an AWESOME video camera (Thanks Lindsey) but haven't figured out how to upload the videos to the computer. Until recently, we didn't have a computer with enough memory to do so. I am sure it's not hard, I just need to take the time to do it. So, these pictures are to spruce up all the boring text!

So... first things first: JOSH UPDATE

Josh had another MRI on Tuesday, October 26.  Dr. Coleman said that it looked nearly identical to the scan a month ago which means that his tumor is stable. He also let us know that stable is the best you can ask for. Glioblastoma is aggressive enough that those diagnosed will never be in remission. So... stable is successful. We will gratefully take it! He just finished another round of Temodar (chemotherapy) and has been officially off the Dexamethasone (steroids for swelling) for a week. So far so good. No seizures, no drastic change in coordination. He does have a random rash all over his body (arms, legs, torso). It drives him nuts. It not only itches, but is painful. We found out is called Folliculitis. It seriously looks like chicken pox. We actually wondered if it was either that or shingles. Hmm... what do ya know? Random rash that sounds made up.  After reading what wikipedia has to say, I am not convinced that it is said Folliculitis, but it does say that malignancy can cause it. So... maybe it is. Dumb cancer.  

That being said life is normal-ish. I continue to be impressed with a couple of families going through the same illness. When I read their blogs I realize I have a lot to work on and that I am grateful I have their examples. I've been using blogger as a journal, I just hope that I haven't made myself out to be a big whiney-pant. I feel like I should apologize to anyone who has read this blog and been annoyed by my relentless purging. Writing has proved to be very therapeutic for me, but I realize I should try harder to be more positive and focus more on my boys, my baby and our everyday lives.  Please accept my apologies for past posts. 

Halloween was a lot of fun because we had Joseph and Martha and their family come and visit. We had a great time visiting, playing games, and taking the kids to the pumpkin festival and trick or treating. My mom always has an awesome Halloween dinner for us. It's been the same ever since I was a little girl. Dinner in a Pumpkin!! I told the boys that is what we were having and this was the following conversation between Kimball and myself:

Kimball: "Mom, so then what is it that we are eating?"

Me: "I just told you, Dinner in a Pumpkin."

Kimball: "I know, but what is it called?"

Me: "Kimball! I said, Dinner in a Pumpkin. It's dinner cooked inside a pumpkin."

Kimball: "I just feel like you are ignoring me. I want to know what it is called."

Me: "I think you must be ignoring me. It is called din-ner in a pump-kin."

Kimball: "Mom, I am saying that I want to know what the dinner is called in a pumpkin." 

Me: (after wiping egg off my face and feeling sheepish for not listening and actually hearing what it was that he was really asking) "Sorry Kimball. It's yummy rice and meat and sauce and stuff." 

He was satisfied.

McKay has (until his haircut on Saturday), been sporting a new 'do. He told me one day that he thought Kimball looked good but, he "didn't look any good." I think he is a handsome little devil and told him so. The next morning he told me he wanted his hair fixed different. I obliged, and if it makes him feel more confident, why not???  I try to compliment him often and tell him how handsome I think he is or how much I like the outfit he picked out. I had NO idea whatsoever that I would be dealing with this particular kind of struggle in self confidence with THREE boys. I have to remind myself to tell him that he looks awesome, or handsome, or great... because when I look at those eyes and that smile- I see BEAUTIFUL! (That, of course, is not manly and if I slip and say it, he is quick to remind me that he CAN'T be beautiful because he is a boy.)

Benson is doing great, and with the release of Toy Story 3, we have had a bit of a break from Harry Potter visiting our house 24/7. I have to say that after almost a year of not being sure as to whether we are being graced with the presence of Harry or Benson, this week or so of sans-Harry has been strange. It's almost like I don't know what to do with myself since I am not constantly drawing scars, searching for wands or fixing glasses! It had become part of my daily routine! Ha! He still loves me to snuggle him at bedtime and wants me to sleep with him. That actually just means that he wants me to lie down next to him and tickle his back. He has also become as much a fan of Lime Ricky's as myself. He is always asking if we can go get one. It's great. It's kind of turned into "our thing."

Eliza is six months old today. Can you believe it? Because, I can't. She was rolling over so good last night. She rolled from her back to her belly and then to her back. She did it over and over and over. We have proof on video! Do you think she would do it today? Not a chance. It's just like a month ago when she rolled from her belly to her back four times in a row and then only once or twice since then. I guess she is content to just be. She is such a little cutie and smiles all the time. She is a good baby and continues to be a constant joy and comfort in our home. Night time is still a struggle, but I keep reminding myself that it goes so fast and to not wish it away. These six months have already flown by. I wish she would stay my baby for longer. 

Help Me to Believe

I (Kristen Baumgarten) updated our personal blog again, and decided that I would copy and past to this blog as well. There may be suggestions that I don't want to miss out on!

A new worry has plagued my mind. Well, not just one... I am also worried about GBM in the spine (once again, too much googling) but there is just one that I seriously need to address. My boys.

They are smart. They know what is going on. They understand that their dad is sick and that he has a tumor. They know that he goes to Salt Lake for medicine. They also know that sometimes people die.  Ever since Josh had his first seizure (yes, he has had another since my last post) the boys keep making comments and asking questions about if their dad is dying or going to die.

How do you answer that? I have told them that he is going to be okay, but I know that isn't good enough because all three of them keep commenting. For example:

• Kimball was emotional tonight. He was worried that his dad would keep having seizures and that he would die before we could go on vacation. He said, "He is our very first dad, and we don't want another dad." 
• On the day Josh had his second seizure (last Tuesday) McKay asked, "Is Dad going to die because Heavenly Father needs him like he needed Josh Graham?" (Josh Graham was a friend, our bishop, and my boss. We all loved Josh and miss him)
• Friday after I drove Josh to work, Benson must have forgotten that we had taken Daddy to work because he was looking for him and said, "Where's Dad? Did he die?"

The truth is Josh and I both have decided that we must accept whatever the Lord's will and understand that in doing so, we will be able to find the peace and strength we need to be able to endure. Josh is better than me. I just want answers. I don't like feeling like things are up in the air. However, I KNOW that I have felt the quiet peace that comes from knowing the Lord is in charge and no matter the outcome everything will be alright.

As adults, with a life of experiences, we still struggle to understand that this life is given to us, and that we need to be okay with just letting go. So, how do you explain that to little boys? They are smart, yes. They have felt the Spirit. I know they have. I have been privileged to witness their sweet experiences. But they are still little boys. I wish that I could protect them from the harsh reality that we are facing. There are no concrete answers that we can give them. No absolutes in one direction or the other. Just that we are doing everything we can, but that ultimately it is up to Heavenly Father. Ultimately, Heavenly Father knows how their dad can best help these boys grow into righteous, stalwart, honorable men (which is something we pray for daily). Heavenly Father can work mighty miracles. He can see the big picture, and we are given so little and must extend our faith. It seems like such a hard lesson, a burden really, that doesn't seem fair to place on little boys.

So tonight, I am contemplating the best way to be honest and fair but to somehow protect them.  We have plans to discuss it for Family Home Evening. I guess I have about 16-17 hours to figure out what the Lord would have me teach them.

When I was in seminary, I had an awesome teacher. Brother Kunz wrote lots of songs and used them in his lesson plans. The songs he wrote all had stories behind them. The one going through my head tonight was about a family who had a son injured in a terrible car accident. To the best of my memory (which may not be so great, given that it is nearly 2 am), the lyrics go something like this:

Help Me to Believe

As I kneel beside his bed, I think about the blessing on his head.

They were the words my Father gave to me. Help me to believe.

I know he hears and answers prayers, when we call him he is always there.

He promised miracles would never cease. Help me to believe.

And help me to put my trust in Thee. Hear my plea, please comfort me.

And help me see-- Miracles never cease. Help me to believe.

As I see him sitting there, I know his life is in our Father's care.

In his eyes I see his faith is complete. Help me to believe.

If I knelt at Jesus feet, He could heal my son so easily.

But I know his power works through me. Help me to believe.

And help me to put my trust in Thee. Hear my plea, please comfort me.

And help me see-- Miracles never cease. Help me to believe.

SIDENOTE: Hmm... I can't remember the rest. I tried to google it to see if I could find the lyrics. (I am getting really good at googling these days.) I just found out that he is teaching at BYU-Idaho. That's awesome. It sounds like his students enjoy his style of teaching as much as I did. One of the quickest ways to invite the spirit is through music, and he did that so often in our seminary classes. Anyway, that song is from his CD, I Believe. 

Tonight, I feel like I am praying and pleading with the Lord to help me put my trust where it belongs: with Him. I am praying for comfort and faith. I am praying for the strength I need to be able to share it with my boys. I want to help them have faith, not fear. I am praying for the enabling power of the atonement to help me do something that I would not be able to do if left to my own means.