"C" is for "Confused"

For those of you who are not following my comments on Facebook,  a few days ago we decided to go get a second opinion up at the Huntsman Cancer Institute.  Just to be sure.

 We have been absolutely overwhelmed with the quality of care and attention we have been receiving at IHC, but were encouraged by many - including our doctors to seek a second opinion.

At HCI, we met with Dr Colman, who is the only Neuro Oncologist in the state of Utah. We were impressed when we also discovered he spent 10 years at MD Anderson in Houston - arguably the leading hospital in cancer treatment in the world. Dr Colman was extremely thorough in his questioning and explained to us that something was odd about this tumor. He said it was extremely rare to have the kind of swelling around the tumor, and also told us there were other traits that just didn't seem to tick the boxes of a standard grade tumor. He said it had signs of a grade 1 tumor... and at the same time said it had signs of a grade 4 tumor! Two totally different ends of the spectrum, with dramatically different life expectancy rates. Then he dropped a bombshell and said he was even open to the idea it may not be a tumor at all!

He said he wanted his Neuro Pathologist to go back and take a look at the slides that IHC had used to formulate the original diagnosis. Dr Colman also said they would be reviewing my scans at their tumor conference the following day. He told us in all likelihood, he would probably end up giving a similar diagnosis... grade 2, 3 or 4 tumor, all of which would have the same treatment applied, so we left with instructions to go ahead and get everything set up to start chemotherapy and radiation on Monday.

This was Wednesday.

Thursday, we visited the radiation oncologist's office to get a mask created for my face, which will protect me from the radiation. That was a fun experience. Oh ya... I also got the staples removed from my head. We then visited the oncologist, Dr. Rich, who prescribed the chemotherapy pills and all the other medications I am to take to handle the side effects.

 As we were leaving Dr. Rich's office, walking us out of the consultation, he got a text from Dr. Colman. Are you keeping up with all the Dr's names?

He looked at us and said "We need to put everything on hold... They cannot confirm this is a tumor!"

Say whaaaatt?

Dr. Coleman called us later to tell us that neither the radiologist who reviewed my scan, nor the pathologist who reviewed my biopsy slides can conclude with certainty that it is a grade 2 astrocytoma. Actually, they can't even currently confirm that it is a tumor at all!

The possibility of MS was brought up.  I don't even know if that would be an improvement from my current diagnosis or more devastating!  I feel like an MS diagnosis would be a little more hopeful than a terminal illness.

Alright, everyone pray that I have MS!!

He said they are going back to the drawing board and staining and analyzing the biopsy from scratch, using their own methods, rather than relying on the slides sent by IHC.

We are supposed to hear from him by Friday to find out if they have gotten any more information.  I don't have a good feeling about having enough tissue.  I feel like we're going to run out.  I'm so grateful that my doctor took the biopsy samples carefully and didn't get too aggressive, leaving me unable to function.  I feel very confident that he got the best sample that he could get safely. I'm visualizing the Bible stories of the woman that fed the prophet Elijah her last meal and then received the blessing of her cruse of oil never running out and her meal lasting indefinitely and also when Christ fed the five thousand with five loaves of bread and two fish.

I need that kind of miracle right now!

The best case scenario that I've heard from the doctors has been that the brain mass could be related to a one time virus!  That would be so incredible!  But my friend Tres had the best idea yet... she thinks it could be a stored ball of love up there in my brain, just hanging around for when I need extra.

I'm going to run that by my doctors and see what they say!

I'm getting a little too excited and I recognize that I'm setting myself up for disappointment. They could so easily come back and give me the same diagnosis all over again.  OR it could get worse!  It is such a wonderful, relaxing thought to think that things could get a little less scary, especially if anything changed that made chemo and radiation unnecessary.  But, I am prepared to take on this challenge either way.  If going through cancer is what my family needs to learn and grow, I am willing to do it.  Every trial in this life is worth going through if it points us on the path back to eternal life with Heavenly Father.

 Even with all this confusion and uncertainty, I'm still on a high from the success of the surgery, feeling so relieved that it went well and in disbelief with how quickly I'm recovering from it.  I'm feeling so blessed that way and just hoping these blessings will keep coming.  Being able to function and be there for my kids is so satisfying.  I know my kids would be a lot more distressed right now if I had been in bed this whole time.  They would feel like they were already losing me.  It's been huge to be able to get them ready for school and do homework with them. I am so grateful for my current health and energy.

My speech is improving as well!  If I try really hard I can kind of carry a tune! I just got to do a semi normal mom thing, though not totally unassisted.  Melanie remembered that Mia's half birthday was coming up.  Thanks for stepping in for my brain on that one, Mel!  The kids that have summer birthdays get to celebrate their half birthdays at school and bring treats for their class.  My awesome sister Maren made s'more squares ( our kids official birthday treat every year) for the kids in Mia's class and gave them to me last night so I could send them with Mia this morning.  But I forgot!  So I hopped in my car and drove my little old self to Walmart to get cellophane gift bags to individually wrap each treat.  Then I delivered them to her class!

It felt so good to do something normal like that, all by myself!

The treats Maren made for Mia's class

Now, I know what you moms are thinking.  If I were the one reading this I would have been feeling guilty for not appreciating those kinds of moments and be scolding myself for having even complained about these kinds of responsibilities that add so much busyness to my already overwhelming life!  No need for guilt.  Being a mom is overwhelming!  We are expected to do so much!  This is a lesson for me to be happy with what sometimes feels like a mundane life.  Going back to that monotony sounds really good right now.  Put the world back on my shoulders!  I feel like doing some squats!  Having everyone stepping in to do everything for me has me feeling lazy and helpless.  It's not their fault!  I just love the feeling of knowing I'm working hard and accomplishing things.  But, of course, I am so grateful to all these lovely people bringing me their healthiest most delicious meals.  Every act of service rendered is coming right from the bottom of your hearts, I can feel that!

Check out this spreadsheet planned and printed out by my tan sisters who teamed up with my super loving and helpful Relief Society president Kara Edwards.   The Relief Society is the oldest and largest women's organization in the world. Relief Society was established in 1842 for women 18 years of age and older. It's purpose is to build faith and personal righteousness, strengthen families and homes, and help those in need.  Most Mormon women probably take Relief Society for granted, but I am being made so aware just how necessary and helpful it can be!  I love you, ward sisters! This spreadsheet has it all layed out of who is bringing our family dinner every night for the entire months of January and February!

Are you jealous of me yet?

And everyone is taking a day to give me a ride to my radiation appointments if needed.  My white sisters are taking care of the kid's rides home from school, and helping out with cleaning, laundry, and homework.  My mom has been preparing my kids lunches for me so I can just grab sandwiches from the freezer and throw them in their lunch bags.

My team is leaving no stone unturned.  Go team!

A big thank you to everyone who keeps sending gifts, flowers, and cards.  My relationships will just never be the same again.  I cannot imagine ever again wondering if I am likeable or loveable after this outpouring of love from everyone! I know who my true friends are for sure!

For the first time ever, I am having someone come to my house to help me clean.  My sweet cousin, Clarisssa, who cleans houses for a living, is coming today.  I cannot tell you how awkward it feels to me to have someone else clean my house!  Someone that did not contribute in any way to making the mess!  How can I tell her to clean stuff?!  That's so weird to me!  I would so much rather just make my kids do it all.  I have no problem bossing them around.  If only school wasn't their full time job.

Speaking of school, everyone there has been so great!  All the teachers and administration have extended their love and support to our family and have asked the teachers to be lenient and understanding of our situation.  The best part of all is that Joseph's science teacher has approved him to do his science project in a team with his cousin Christian!  This means that Melanie will be supervising the whole science project and I don't even have to worry about it at all!  Now, I know I said I wanted to get back to my normal life, but few things stress me out like science projects.  I'm still a little traumatized from the procrastination I did as a child and still harbor negative feelings because of it.  Luckily, Melanie is right on top of it with the boys.

Here's something I wrote yesterday about the upcoming treatments before the backtracking on the diagnosis:

Now on to my second source of confusion, how to go about treating and healing this.  This is the most confusing thing of all!  We have worked so hard to surround ourselves with the best, most experienced doctors.  And I am so pleased with them so far!  But so many people and so many things I read tell me to ignore what my doctors are telling me to do and self treat with alternative therapies.  I have been planning since day one to utilize alternative treatments, but I never intended to disregard my doctor's advice altogether.  I believe that there are natural remedies on this earth that are being ignored by the medical community that could really help people if doctors would just pay attention.  But, at the same time, I believe that God inspires scientists and doctors with the medical knowledge and advances that we have now.  I believe both things are from God.

My plan was always to utilize both.  The worst thing I heard at my appointment yesterday was that my doctor doesn't think it's a good idea to use any supplements, oils or herbs during treatment because while the radiation and chemo are hard at work trying to stop the cancer cells from growing, supplements and herbs could be regenerating those cells and counteracting the beneficial effects of my treatment!  I wanted so badly to utilize all therapies and I was convinced that I was going to blow everyone away with my fast recovery and miraculous healing, but without my secret weapons, how can I cope with the treatments I'm about to undergo?  If I'm going to go through the treatment process, I need it to do its job.  It's too much suffering to go through to waste it.  But, the thought of poisoning my body and not doing anything to counteract the damage to my health is more than I can bear!

I want to speed the healing process as much as I can and use remedies to minimize the symptoms associated with chemo and radiation.  So, I'm left with one option, diet.  The doctors say I can do any kind of diet I want, so that's the only tool I feel like I'm left with.  Of course, I'm not even making my own meals right now  and based on what I'm told about the effects of treatment, it's not looking good for becoming a full time dietician.  They say that about three weeks into treatment I will start to have extreme exhaustion.  They say some people continue working full time and some people can barely make it to their radiation appointments and back.  There's no way to know where I'll fall on that scale.  Do I dare give up all of my meal help and thrust myself full force into a nutritional war on my cancer?  Will I have the energy to keep it up if I do?  I believe that God will inspire me with the answers I need, but so far, I'm just plain confused and don't know what to do.

Pray that I will have the inspiration I need to make these most important decisions.  Thank you for your prayers!  And to those of you that keep saying you wish you were close by so you could do more, there is nothing more valuable than your prayers!  Prayer is so effective, it is my greatest tool right now!  It provides answers, blessings, miracles, and comfort.  Lots of comfort!  It's surprising how manageable something like this becomes with God supporting you.