Snowmen Have Brains

Update

2009-05-19T23:18:00.000-07:00

Once again the day is over, and I still don't feel like blogging or talking much. Has anyone else ever suffered from communication overload? It is a cousin to information overload, only it makes you not want to talk to anyone, even the people closest to you.

Had an MRI today... That part sucked. My veins really are not that hard to find!? Why does a seasoned nurse choose a vein tucked between two knuckles to inject the dye? I am a wimp about needles, but if I could show a slide show of the times I have had blood drawn and/or IVs input, the majority would agree that there is cause to have sweaty palms. Today was no different. Nonetheless, I recognize my wimpyness. Much worse can happen and does to good people all the time. However, I am free of IVs and MRIs, God willing, for 6 months, since my doc says no growth at all! He does not need to see a new MRI for 6 months instead of 3 previously prescribed. I am happy to concur with this diagnosis after reviewing the MRI. This solidifies my decision to not start chemo right now as it does not appear to be immediately necessary.

There is a lot of good stuff going on in our lives. I have been enjoying that, and yet experiencing anxiety like I never knew was possible. That is partially responsible for my lack of communication with good friends and family. Ok, maybe that is an excuse.

Anyway, I am grateful to so many people right now, and I promise I will soon get my act together and reach out to the good friends, neighbors, and loving family who have done so much for our family in the last few months. I love you all and hope all is well with you. I am going on two fishing trips that I have been looking forward too, all the while knowing they could be cancelled, if the news today were not so rosy. I will share pictures of those good times in a few weeks, and I promise to get over the communication overload.

In the mean time get your amalgam filings removed properly, consider buying a juicer, avoid MSG, quit using tobacco, and consider your health seriously. Take small steps to improve it. No one else will, I promise. See... now you won't want to read a post from me for another 2 months.

Smootchie Bootchies.

Feeling good in the hood

2009-03-31T20:04:00.000-07:00

I have a lot of things that I want to speak about, but my patience nor yours is nearly developed enough and neither of us have enough time to type or hear about 1/10th of the things going through my thick head lately.

1st- good info on the baby front today. Alisa had an ultrasound and all looks good. 10 fingers and toes, 2 legs and arms, 4 ventricles, 1? We did not find out.

2nd- Met with my Neuro Oncologist today- I am going off of one of my seizure drugs. Dilantin out, Keppra still in. keppra is the choice because it does not interfere at all with the Chemo that I might start in late May. I have an MRI on 5/19 and that will be telling as to Tina's growth or shrinkage. When I meditate I am going to imagine that Tina is in a cold swimming pool and that George Kastanzaesque, she is going to shrink like a vienna sausage. Then Elaine (aka Dr. Chocair my neuro-onco), will bust into the room and my tumor will be shrunk down to half its normal size and I will scream shrinkage! Also, good news is my liver and kidney functions are normal.

3rd- Someone spray painted my dog's butt on Sunday. What a douche. Kaiser is a pretty laid back dog and just likes to play with other dogs. I let him out the back yard for about 30 minutes while I vacuumed. Yes, I was doing the vacuuming. Alisa was taking a nap as it should be- she is prego. All of the neighbors thought that she wrote the letter that Deme and I posted on their doors, because it said, "While I was vacuuming..." Kaiser attacks the vacuum. My initial intuition of who I suspected of being a huge jerk, was backed up by 4 neighbors phone calls. No eye witnesses, but all people who said that there is a person who doesn't like dogs. Funny thing, they have a dog, which is why Kaiser was hanging out saying hello to their dog. Also, they have a swimming pool which could easily be filled with flung dog pooh later this summer. Is flung a word? I know it was them due to the fresh snow and dog prints that I tracked like a starved mountain man. They will hear from me and apologize. Oh yes. Or they will rue the day they spray painted my dog.

OK - This post is edited- I had a 4th item in here last night, but when I woke up it was not funny and could have been slightly offensive. I hate to self-censor, but fillet mignon was on sale at Costco yesterday and so we bought a few. I seared them on the griddle and then broiled for 5 minutes a side adding kosher salt. Perfect, restaurant quality medium rare. You can't eat a steak like that with out a little cabernet. There is a reason I don't like wine. Two glasses and my sense of humor is off, my head hurts, and its snowing.

Work, WOrk , Work, WOrk, Tumor, Work

2009-03-25T16:22:00.000-07:00

Tina has been neglected the last few weeks. I have been pretty busy at work. It is tough when you are the moderator of the whole lending process and you are excited for people to buy homes and refinance and save money. I wish this job were drifting nearer to what it used to be. Right now I feel like each day is another 15 disasters waiting to happen. Unfortunately, it is not just me and my loans- It is everyone in this industry. It is difficult to deal with the stresses and they are created because there is real consequences when things go wrong. I feel that my job in this world is a good one. I am growing weary of it, but I could be in a lot more odious industry.

Some look at mortgage brokers as glorified used car salesmen (by the way I love all you car salesmen out there- you get a bad rap). I can tell you though that were it not for our industry, banks would completely own all of us by now (reasons for this for another blog post). Not to mention, those of us who do honestly work to get every client the best deal possible, with diligience. I talk to people everyday who could be talked into rediculously terrible loans. The sales side of this industry is very simple once you get the hang of it- An unethical loan officer could completely exploit the minor needs of someone to get them to do a loan even if it is not in their overall best interests.

OK- boring blog but I needed to give myself a little pep talk on why I shouldn't tell everyone to get out and change the message to say, "Ryan is in Mexico working as a skipper on a fishing boat, Alisa is braiding hair on the beach, and Deme is undercutting the locals and selling chicklets for one peso on the church steps. Leave a message and we will call you at Christmas...beep" That is kind of a dream.

1P- 19Q deletion present- this is a favorable prognosis for the patient. That is what the pathologist said which I think is a good thing. My friend Emily told me that I really needed to update my blog so that everyone would not worry. So there you have it. I am not worried, at least not about this tumor, at least not right now. Thanks for you prayers, support, love and friendship. Pray for those in need, and take an opportunity to help someone if God presents the chance.

2009-03-10T20:36:00.000-07:00

So I have been waiting until I can post some good info or an update about what is going on with me and Tina. I will probably be finding out if she is eligible for the slim fast diet for tumors regimen in the next few days. That would be nice and is probably going to happen. I am not really nervous about having chemo. Realistically I have not had much time to think about it, but when I do I think of friends who are on it or have been on it. I think of 4 year old Tommy down the street and wish he didn't have to have it.

There is so much information out there that it is kind of overwhelming to try and optimize what you are supposed to be doing. What vitamins should you take? What water should you drink? How much should you exercise when you have something like this? Am I talking to the right specialists? BTW- this is absolutely not an invitation to make suggestions about any of those items.

I am grateful for the friends and family in positions to help, suggest helpful avenues, provide support, give advice, etc. Very grateful.

The staples are gone (I do miss those), I hope the seizures are gone. Any additional treatments in the short term will be undramatic. I am hanging on to the mullet hawk for a little bit longer to make sure people know I really like having a mullet and a mohawk. All in all, there will not be many fireworks regarding Tina. If she disappears, I will be stoked and tell everyone. If she gets bigger, I don't think I will need to wait for an MRI to notice.

I am sort of converting this blog, in the short term, to a soap box on ideas and mental notes to share. It was that or old mormon recipes, or mortgage info. I can't stand talking about mortgages sometimes and there are enough recipe blogs. There are several reasons for the change of topic:

1. Faced with personal mortality at 31 and experiencing the mortality of my child at age 29 has made me think a lot about what is important and what is not. I normally do not pleasure in public pontification, nor do I fancy fables, but I consider the most important job in my life to properly raise the 5 year old that brings joy to me and everyone in her little world. The little one on the way has many lessons to learn too. I know this scares some that I am in charge of this task, but the majority of the rearin' is handled by their Mom, Alisa (who is a great mother). I am more a teller that a writer, but allow me to share ideas with you and with them and gather your input and feedback. I am rarely serious. That is one of the most important lessons I have learned- not to take things or oneself too seriously.

2. That said I have enjoyed writing these posts and hearing from people about them and what they thought. I have had a lot more ideas flowing though my head and some of this medication makes me forget them, so I am going to start writing them down. Some of you will be scared, but I can't imagine too many. Maybe we will do guest posts of exceptional content or humor?
What would be a better name for a blog festival... blogapalooza, burning blog, or blogchella?

If any of you like music suggestions, check out Blitzen Trapper. The song "Furr" was the first one I heard, but now I like the whole album.

Tina is an oligodendroglioma and a fat lard.

2009-02-24T16:34:00.000-08:00

So I named my tumor Tina. Any of you named Tina please don't take offense. I knew some Tinas in my younger years and didn't like any of them. I only know one now, and she is a nice person, but the line from Napoleon Dynamite is so fitting. Tina the Tumor.

So I have an oligodendroglioma. It is a grade II. This is the best prognosis that could be expected. Olis generally grow slower and all signs indicate that mine is growing very slowly. As mentioned before it is in a bad spot. Surgery is not an option. I would definitely have side effects. Radiation is the preferred method of treatment, but has serious side effect including memory loss, motor skill impairment, and possible speech issues. Thus, waiting is a good alternative if it remains slow growing. This way I will be old when I have these side effects so all will seem normal. Just kidding- I love all of you baby boomers. A test is being done to see if there is a deletion of the 1p, and 19q (or something like that)chromosome in the tumor. If it is not present, I can have a specific chemotherapy that has shown the ability to fight this type of tumor.

Things that are good for me: my age, grade II (vs III or IV), the histology (olig), size (2.5 cm X 3.5 cm), not across the mid-line of my brain. Also, the manifestation of the tumor through seizures is a good thing. It means my body is recognizing in a dramatic way that something is not right. I also have no other symptoms other than the seizures.

Bad things are location due to inoperability, and the side effects of potential treatment. I can't drink too much (which is my preferred relaxation technique) due to the seizure meds and stress on the liver. How lame is that, now that I have a full bottle of Loritabs and am stressed more than ever, I can't enjoy them with a few cocktails. Some of you are saying shame, shame. Others are trying to remember my garage code. Beware I have a gun, a mohawk and a large dog.

Even holistic healers say that it is difficult to completely rid oneself from primary brian tumors without surgery. I would not mind surprising everyone or being that one case.

I spent about 5 hours last night researching and based upon everything I found, I expected that this is what I had. I told Alisa this morning, "We are hoping for a Grade II Olig." So this is good and semi expected news.

So essentially there is a bomb strapped to me, and they can't cut the wire cause it will explode. If they try to mess with it, it could explode; but it is not making any ticking sounds, so yea! Oh, and they will tell me if it has started ticking in 3 months. I am fine with this news, but my sweet wife Alisa, is needless to say, anxious.

We love our good friends and great family and are so grateful to have you around. Thank you to everyone who has brought us dinner lately. You are awesome. Alisa does not like to cook when she is pregnant and so it has been a lifesaver. Also, thank you for the prayers, thoughts, good vibes. We are feeling them and I know they are working. To people reading this who have been through similar situations and have been willing to talk and share stories and listen- thank you so much. It has been wonderful sharing support and commiserating.

With the mortgage industry going the way it is, I may just request extra radiation, become a pot smoker, and train monkeys at the zoo to throw pooh. It is about as profitable and and way more fun.

That is it for tonight. Time to watch Amazing Race and Fight Club. Does anyone know how I can get on Amazing race? I have some good story lines that they could exploit. Fight Club is just research for my next career. Now I needs to eat some watercrest sprouts, garbanzo beans, and fresh beets. Those monkeys are gonna freak out when I hot box them and cover them in purple.

The keppra may be affecting my sense of humor.

Staples R Us

2009-02-19T08:23:00.000-08:00

Just to keep everything straight this is Alisa updating Ryan's blog. The good news is the biopsy is over. They took 4 needle samples of the tumor and he has 11 staples in his head. I wish I could say it was a piece of cake but the last two days have been pretty rough and stressful. The surgery went well but shortly after Ryan was moved to a recovery room he had 3 minor seizures which were very scary for both of us. We were then moved to Neuro ICU to be watched a little closer. He did alright on Tuesday night but when he woke up Wednesday morning he started to have extreme stomach pain. This is the first time Ryan has ever had surgery or anesthesia of any sort. He had a severe reaction to the anesthesia in combination with all the pain meds and anti-seizure drugs he was on. So yesterday he spent most of the day in extreme pain and discomfort. The pain was so severe it caused vomiting. He also had 2 very minor seizures yesterday morning. They are getting less and less in severity which is good but still a little stressful for us. They seem to occur when he is concentrating or emotionally excited. However we are pretty sure that they related to the recent surgery and will go away shortly.

It's Thursday morning and so far no seizures today and the pain has subsided substantially. We are hoping to be discharged today. He also spoke with his Neuro oncologist and we should have the pathology reports back tomorrow and have some concrete information as to what this tumor is.

Ryan hasn't had any pain medication in almost 24 hours so he is feeling good and sounding like himself. He just needs to rest. His Dr. is not alarmed by the seizures he says it is to be expected when an area of the brain that caused his initial seizure gets aggravated. He's had two CT scans since the surgery and nothing on them has been alarming. He has a little blood by the area that was operated on which is not normal but not to be unexpected and that could also be putting some pressure on the tumor and related to the occurrence of the seizures.

Thanks to everyone for your thoughts and prayers. We've received so many phone calls and texts and we apologize for not being able to respond to everyone. But know that it's all appreciated and needed.

This is Ryan, aka Frankenstein Head- I love you guys and appreciate the prayers and thoughts for me and Alisa. My brother Joel, friend Jason, caring Mom, and amazing Wife have been by my side in shifts through most of the past few days and I want to let you and them know how awesome their comfort and support has been.

Several side notes- I have been helped by nurses, nurse practitioners, and OR Attendings- 7 of them have been named Laura Or Laurie. Weird huh. I also had a Nikki, Kelli, Casey. If you know a medtronic sales rep slap them. Appearantly there are three of them for this hospital, and my surgery was delayed one hour for each of them because they could not get a part. Not the most stressful three hours of my life, but close. I am no longer afraid of IVs, and I don't have visible veins. First attempt took five tries in five different locations. ORs are very cold, take the blanket if offered. I would estimate that I am 60% of normal right now. Just a warning. I will get better and better over the coming days.

Neuro Surgeon visit #2

2009-02-12T18:11:00.000-08:00

Today we visited with Joel MacDonald at IMC. He discusses a lot of the stuff we had already talked about with the other Dr. and reinforced the fact that we really need to see what the exact cancer is that we are dealing with. Gliomas have several varieties, some of which respond differently to varied treatments. This will require a biopsy which will be done on Tuesday 2/17 at IMC by Dr. MacDonald.

The most probable short term course will be to wait and watch. The only symptom I have had with this tumor was one seizure. With continued seizure medication, which is very common, I will be able to drive in a few months. The consequences of surgical complications, radiation, or chemo all have lasting effects. Being in the motor cortex, it is a difficult and tricky operation and should not be done unless completely necessary. Radiation, even gamma and cyber knife technologies, can have short and long term health effects and I don't think he meant I am going to be in the next episode of X Men. Chemo weakens the entire body along with the cancer. I am probably weak enough as it is.

Seeing as I am in overall great health otherwise I will likely wait and watch this, because really... what is more enjoyable than fishing in a river, or driving your family around town, sitting on a ski lift, or using a sceezy urinal with piss puddles under it... all the while knowing that you may be about to have a seizure.

If it progresses, we will have to make some decisions with the aid of neurosurgeons and neuro-oncologists as to the best course, but we need to know exactly what the tumor is composed of in order to chart a course. So minor brain surgery Tuesday, and from there not sure. Should be home Thursday at the latest.

Thanks you for all of your thoughts and prayers. I hope you all know how much I appreciate our friendship. If any of you have called me the last few days and I have not answered, please forgive me. I am still fighting some sort of cold and with all of the talking I am about to lose my voice. I want to visit with you all, and please know that I am not going anywhere quickly so we will get too soon. That said, you never know what will happen tomorrow. So hug someone close and tell them you love them. If they are hot, give em a little goose and tell them, "Your welcome from the Snowman."

Neuro Surgeon visit #1

2009-02-10T17:55:00.000-08:00

Alisa and I visited with Dr. Nathan today for about 40 minutes. He was very informative and was able to answer a lot of questions for us. The big news of the appointment was not great. The assumed glioma is definitely in my motor cortex. He indicated that he would not recommend at this time a resection (removal) of the tumor, because it would very likely affect my motor function on the left side of my body. For now his advice is to do a biopsy of the tumor and have a pathologist determine the exact nature of the tumor. Then, conversations with the neuro-surgeons and neuro-oncologists will determine what we do next. Dr. Nathan indicated that they will likely do some form of radiation treatment.

We also discussed some of the more cutting edge medical treatments and were excited to find out that there is a Gamma Knife in Utah. This is a precise piece of equipment that can destroy cancer cells with radiation, but with limited effects to the surrounding healthy tissue. Other options include interactive brain mapping that involves awake open brain surgery where they remove tissues little by little and actively test the patients motor function. As long as they give me a valium or two I could probably enjoy this. Makes me wonder if brains stink? This procedure is only done at the University of Utah from what I gathered. The name Dr. Schmidt came up as a specialist.

So with another appointment on Thursday, we will wait and see what Dr. McDonald has to say. Dr. Nathan indicated that he has great respect for him and that he expects his diagnosis to be similar.

So this is kind of a bummer. We were kind of getting our hopes up that they would do the biopsy and get a pathologist on standby to confirm and then the surgeon would resect the tumor. This is pretty much a no go now, as he indicated that even a partial removal may affect motor function.

I am working on positivity right now. I have had cold symptoms for about 9 days now, and it is really a drain on my state of mind. I need to get active, but it is hard when your head feels like it weighs 50 pounds. I have really cleaned up my diet and my body may be registering a state of detox and that could be causing the cold symptoms. No chew, no soda, no sugar, nothing artificial, lots of fresh veggies, vitamins, tons of water and green tea. Cocoa, acai, blueberries, mortmorency cherries, flax seed and fax oil, wild caught salmon.

I need to get some confirmation of when I can drive too. If I am on Dilantin, I should be safe from seizures. Having to be chauffeured is really lame. So I will get this all figured out soon. I am nervous, but being really aggressive about fighting this. I really appreciate everyone's prayers, support, love and friendship. I promise my next post will be either better news or the usual happy go lucky Snowman. Just a little frustrated right now.

2009-02-04T22:24:00.000-08:00

I have an appointment with Dr. Nathan on 2/10 and with Dr. MacDonald on 2/12. Hopefully they agree on a course of action and I will go with the one that feels best. For now I am researching ways that I can create an environment that is resistant to carcinogens and gives me the best chance to avoid future complications. IE a strong immune system.

You guys are awesome. I hope that I remember to pray for myself as much as you are praying for me. Please keep my wife in your prayers. She is a great woman, and has been through enough without me complicating things.

Be prepared for a weirder version of me, as I will be making a lot of changes (some of which will make a difference, some of which will not) in order to ensure that I stay here.

By the way, if this sounds a little goofy... I am on Dilantin, which in 4 days of use, I am convinced is the worst drug ever. Groogy and dizzy without the euphoric effects of alcohol.

Skizing

2009-02-03T09:02:00.000-08:00

OK- that was kind of creepy. I decided to start a blog to help keep people informed of what is going on and, when I entered my email address, it said I already had a blog and took me here. I remember being desperate for a title and naming it "Snowmen Have Brains." This must have been during the summer, as that was the only time in my life where work was so slow that I would actually spend time blogging. I never did anything with if, but here is a good opportunity.

I am the Snowman, so named by my friend The Beezer. I also respond to the following nicknames: The Snowish One, Broseph, Ry Guy, Frosty, Daddy-O. The association of the brains is a serious coincidence. As you probably know, I found out that I have what is probably a brain tumor on the right side of my head above my ear. So while Snowmen have brains, this Snowman has a brain tumor.

Based upon my research and what I have been told by neurologists and radiologists, the most likely diagnosis is that I have a Low Grade Diffuse Glioma. As I have researched this further, for my demographics, symptoms, and the MRI reading, it is likely a low grade diffuse astrocytoma (seems to be a subcategory of Glioma). The good news is that it is in an area that is near the surface, and while all brain matter is important, this is not directly affecting critical brain function. It is close to my motor cortex for the left side of my body, but does not appear to be affecting that area of brain as I have complete control of my faculties.

I have an appointment with a Neurosurgeon on 2/12 and will know more later. The anticipated prognosis is that a biopsy will be ordered, and pathologists will confirm what specifically I have. From there, the docs will make suggestions ranging from tumor extraction, to chemo, to radiation therapy or a combination of these treatments. Glioma's are normally difficult to remove completely and will likely be something I will have to follow up on and/or combat in the future. There is a small chance that this could be plaque related to early stage multiple sclerosis, however it does seem to be a small chance.

Due to the seizures I can't drive for the time being, and the anti-seizure medicine Dilantin makes me a little dizzy. As my Grandma Zelph used to say, "Godfrey, I'm havin a dizzy spell!"

Thanks to everyone for your thoughts and prayers. I am going to make it through this and we will have a huge party when I am on the mend. I love you all very much and I look forward to seeing you soon.

I want to thank my friends Dan Richardson and Tony Passey who were with me when I had my seizure and helped me get medical attention. I gave them quite a scare.

Also, my wife Alisa is a rock star. I am trying not to stress her out, as she has enough on her mind and in her belly. I will post more later.