Funeral

Thank you for all your messages of love and comfort. For those who can make it, Tyler's funeral will be Thursday August 4th at 1:00 pm at the LDS Stake Center on Thayer and Sunset, Richland, WA. A viewing will be held both Wednesday night 6:30-8:30 at Einan's Funeral Home (915 By Pass Hwy, Richland), and briefly before the funeral Thursday, 11:30a-12:30p, at the stake center. You can see an obituary and viewing/funeral arrangements at http://www.einansfuneralhome.com/_mgxroot/page_10780.php?id=956793

The Top

Tyler reached the top of the stairway and passed on about 1 am tonight. (see post below) His decline was surprisingly fast considering what we were told and anticipated. This was what he wanted and certainly a blessing. Feel free to email myself or the family using Tyler's email address (puls_81@yahoo.com) with any questions, comments, etc. (obviously you can post comments on this blog as well).

I found some cancer forums recently where Tig posted comments of encouragement to other GBM patients. I thought you might appreciate a few of those comments to help understand what he believed and felt regarding death, after-life, and faith in God and Jesus Christ. You may notice that these comments reflect this thoughts over the past two years of his nearly four year fight. Again, Tyler's words, not mine.

May 28, 2011
I am so sorry to hear that his time looks to be up. Thank your/his lucky stars that he is no longer in pain and the Lord is looking over him especially now that you have given him over to Him. It is tough to accept I'm sure, but he is embarking on a new journey to his God and you will see him again after this life. That knowledge sustains me as a patient who knows the end is coming sometime.

Feb 01, 2011
I have done my best to live like I'm living and not live like I'm dying. I am different and tired all the time, but I am still alive thanks to prayers, faith, and medicine. It takes all three so that is why I am asking for prayers from you.

Apr 25, 2010
God hears and answers every prayer. He has not abandoned you or Andy. Sometimes God's answer is no, or at least not right now. It is difficult to know why-maybe Andy has a great work to do in the afterlife and God needs him to come home. This is really hard, but God is here to help you through - even if everyone else abandons you and Andy, God will not. I will pray for the miracle and for blessings of peace and comfort for both you and Andy.

Apr 25, 2010
I am going through my own battle and that is why I know that you and John need prayers right now. It's hard to tell exactly how God will bless both of you, but He will listen to our prayers (and your prayers) and will send His everlasting love, peace, and comfort to you and to John. If it is His will He will also send a miraculous healing.

Apr 08, 2010
Your mother is in paradise with God and she is looking down at you and all of the people that she loves and left behind. She is with God and all her friends and family who proceeded her in death. She is in peace, and yes she is guiding you. Christ will give her a brand-new perfect body at the resurrection.

Mar 07, 2010
Friends don't really understand what you and your father are going through - but God does. And I suggest you turn to Him for much needed comfort and understanding. He may not fix your father's tumor, but He will help both of you to deal with this cancer, and will help you emerge a stronger, better person-no matter what the outcome.

May 24, 2009
I am sorry to hear of your loss. He is now in paradise with God, saved from this terrible disease and it's effects. You will meet again. I hope this knowledge can bring some comfort to your life. God will also give comfort if we only ask, believing we will receive this comfort.

Stairway to Heaven

Tyler's brother, Trenton, here attempting to keep the theme of Tyler's posts which often seem related to his favorite music. Please excuse his lack of posts the past three weeks to his blog, Facebook, and the various cancer forums he frequents -- he is quickly climbing the stairway to heaven. If you know "Puls" (to friends) or "Tig" (to family), once his mind is made up he barrels ahead. That seems to be the case with him now. He is resting peacefully (we believe he's pretty much pain free) at home now with minimal interaction and only a few hours or days left before he'll reach the top of the stairway. I'm not sure how many of you would appreciate the details so I'll wait for responses for such. On a good hour he can still hear and will open his eyes when a family member speaks to him. We read him notes from forums, Facebook, and comments here when he seems to be responsive - otherwise he sleeps. Feel free to ask questions or simply post comments of love. Tallie will be posting something on Facebook tomorrow (Jul 28) as well. Thank you for your friendship to Tyler and the prayers of comfort sent to him and his family, we have all felt their effects.

Off the Juice!

So if you haven't heard I am going off the juice. This last treatment really bowled me over, it's just not worth it for all the pain and side effects. I'm just tired. Vision is bad, left ear is completely deaf, can't walk alone even with my walker. can't makemy own food, shower myself, go to the bathroom by myself, so I want to be done with everything. I have no desire to just live almost without meaning. I'll take prayers for comfort and pain free and something to do.

Roller Coaster (of Love)

It's certainly been a roller coaster lately. Days when I don't want to even get out of bed (see Thursday and Friday). Other days-Saturday I woke up well rested at 6am, took a shower, ate breakfast, and got ready for a day trip to Seattle to watch the Mariners. It was fun but I couldn't see well enough-I got a new subscription and glasses on Friday and am looking forward to being able to see again. I've been using an eye patch to get rid of double vision. It works pretty good but it's hard to wear glasses with it and my new glasses will correct for it and be much better.Sunday was in between, Today I had a lot of insomnia and couldn't sleep much past 3am, but I still have felt good and even walked on the treadmill for the first time in a week. Tomorrow I have the first day of 2 for my second treatment, so I may be sick in the next few days. On the bright side I started taking half a dose of Temodol and a Tylenol before bed so I don't wake up at 3am with a headache. That combo was recommended by my cousin and it's great-working wonders!

Sleepless in West Richland

Ok, even though nobody is commenting on my blog, Marc requested an update. I went to Seattle on Monday, May 9th and wasted the whole day waiting for medical people to figure it out and listen to me-I could answer most of their questions as I've been through this for 3-4 years, but all they did test me for blood clots, found some in my legs and gave me a subcutaneous stomach shot (lovenox). Tues they finally got me an MRI but didn't tell me how the tumor's doing. Then they finally gave me a reduced dose of the chemo treatment (cytoxin). Wednesday they gave me another reduced dose, and we were able to come home. They also had a meeting about me and cyberknife, but they didn't tell me what they decided. My platelets are low so they can only give me reduced treatment dose. It is IV administrated over 3 hours 2 days in a row then 28 days off. I am looking to get the next treatment June 9th and 10th here in the tri-cities, and hopefully at full strength if I can get my platelet count up (however you do that). I haven't had any nausea or hair loss yet. I've had some fatigue. I am trying to wean off decadron, which has caused some headaches. I saw a family doc today and he took me off the lovenox for blood clots. Now I am only on Coumadin (warafin) for blood clots, decadron (dexamethasone) for brain swelling, and cytoxin (chemo IV drug, next treatment June 9, 10). I was supposed to do physical therapy today, but they cancelled that because of the blood clots so that was a waste too. To sum it up a lot of wasted time and a lot of waiting and being bored. The decadron causes night time urination (my record is 10x in one night!) and can cause insomnia, hence the title. I'm getting around with a walker and doing okay. I have what they call chemo brain (a little fuzzy) and my vision is in and out. Overall I guess I'm pretty good considering the circumstances. I am going to home evening tonight to my ysa branch, but I don't plan on playing dodgeball under the strobe light for activity. That's where I am.

Out of Utah

Hey everyone, I'm posting from WA from my parents' house. Not quite totally freedom, but a lot better than the hospital. I got discharged on Thursday April, 14th and we drove all the way home that day. We've been unpacking, and I've been working on my online class for school-just trying to catch up. So I'm feeling okay, pretty weak still-especially my legs, getting around the house with a walker. The doc resected 90% of the tumor during surgery and said I was able to bounce back really well. I might say well, but whatever-now I'm pretty good. I have no news on long term treatment plans or prognosis, hopefully that comes soon. I am considering gamma/cyber knife treatment in Seattle or chemo treatment in Kennewick depending on what I qualify for and what dr. Coleman from Huntsman recommends. Thank you for all your thoughts and prayers and keep them coming.

Progress in Rehb

I guess it's time I finally blogged so all you non-facebookers hear from me. I am in the rehab center in the hospital (UVRMC). I should be getting out on Thursday, April 14th and driving back to WA to my parent's. I had surgery on March 25th so that's a longer stay than last time (in 2008) but a lot better than 2007. I am unhooked from all tubes and wires, just swallowing pills all day and being awake all night. I am doing much better everyday, getting stronger and more balanced. The left side of my mouth and face still feels numb, like Novocain is still there-that and worse overall vision seem to be the only/main deficits as I am getting stronger, more mobile etc. I can eat anything and get around with help.

Crash Course in Brain Surgery

So I finally talked to my neurosurgeon on Tuesday. He told me the chance of deficits from brain surgery are not much more than just letting it grow. He anticipates that it will go close to my last surgery-I was eating liquid foods 12 hours after start of surgery and I was in the hospital 10 days I think. It will be a little more risky and intense because he's cutting through scar tissue again, but it doesn't seem to be too bad an option-he's had more thn a crash course in brain surgery. He's operated on me twice before and I'm familiar with the hospital (UVRMC) so that' makes me feel a little better/more comfortable. Dr. Coleman from Hunstman recommended this step before trying an older chemo, and I am considering leaving some BCNU (chemo) slow release wafers in the tumor site. After I get released from the hospital (aiming for April 4th), I'm moving back to West Richland and my with parents for recovery, rehab (if I need any formal rehab, may or may not), and treatment. I am looking into doing gamma-knife treatment in Seattle (focused radiation) at that time too. If I recover fully and really well, I plan on moving back to Utah County in June after my brother gets home from his mission and doing an internship with The Utah County Health Department that I was supposed to start on Monday. Otherwise I'll stay in Washington as long as I need to. The goal is to be lucid, continent, and mobile in June when Kaleb gets back. Anything else is icing on the cake.
That's the plan. I wish it was more long term and more set in stone, I hate moving and I hate trying to both plan for the future and go with the flow at the same time. Setting goals and working toward them is great for the spirit and the psyche. I've just had to change and temper then expand my goals too many times over the past three years. I've had periods of consistancy, but they never seem to last long enough.

Mormon Rap

I'm putting Salt Lake City on the map! Just got back from Huntsman Cancer Hospital in SLC. Trying to connect with my neurosergeon here in Provo to discuss another surgery followed by chemo (probably BCCU). Feeling okay, a little tired, lightheaded, cloudy, and vertigo/dizzyness stuff. I can feel the tumor swelling, but it's not causing any headahes this time so that's really good. Just not sure if surgery is worth it again or if different chemo will help much. Onc at Huntsman has little hope beyond 6-9 months for surgery and chemo (more like 6 months for just surgery and 3 months for just chemo) no prognosis or much discussion on no treatment. Yeah he wasn't very positive compared to my onc in Provo. So I'm trying to get in ASAP to see neurosurgeon and talk about effectiveness of surgery-tumor has shifted a liitle so it may be a little tricky and/or less effective than last time, but we'll see. I need to wait 2-4 weeks anyway to get all the Avastin out of my body so it doesn't interfer.
So phsyically and mentally I'm slowing down a little and working through what I should do. Professionally/scholarly I'm wondering of I can do this internship now or if I should try and put it off for 3 months. I may have to move back in with my parents if I have another surgery, lose my driver's licience, and need rehab etc. Chemo may affect me a lot too-no way of knowing yet. Iguess I'll just have to figure it out. Any opinions, suggestions, thoughts, or examples from similar real life experiences?

The Waiting

So The Waiting really is the hardest part. I'm still waiting for an appointment with Dr (Garry?) Coleman in SLC to discuss going on BCNU. They don't have any here in Utah Valley, the manufacturer doesn't have any and aren't making any, so I have to see someone at Hunstman, then get scheduled for a dose, then get the dose. It's frustrating because the MRI on 2/7/11 showed growth and I got my last dose of Avastin on 2/9/11, and should have started on the BCNU (or something else) immediately. A month is a long time to leave a tumor growing unchecked in your brain. I've been very patient, but I'm with Indigo from "The Princess Bride" when he says, "I hate waiting!" I'll update here and facebook when I actually have an update to give.

Cancer-MCR style

For those of you who haven't heard, I am back on the sauce. That's right, I got an IV infusion of decadron (dexamethosone) yesterday, and I am going to the pharmacy today to get it in pill form. It reduces swelling in the brain, but has other side effects like swelling in the face and head, weight gain, peeing all the time, and a few other minor stuff. Good news is it had an immediate positive effect and I woke up early today, did homework, exercised a little, and feel much better. I just hope it continues after I start BCNU chemo treatment this week. I take that through IV every 6 weeks. I have another apt with my doc in 2 weeks to talk about the steroid and how I'm doing, and an MRI in 6 weeks to see if BCNU has helped at all and if I should continue getting it.

I don't know if I posted this link here or somewhere else, but seriously My Chemical Romance's music video for their song "Cancer" is amazing. If you don't tear up while watching the little girl's support for her friend (who is a cancer patient) then you have no soul and you are an embodied minion of Satan. Just to clarify, hair loss is not a usual side effect of this medication, but I have no problem with shaving my head (as many of you know) if it comes to that. I just wanted to share that song with you as it helps explain some feelings many cancer patients (including myself) have and deal with from time to time. Just to assure you, this song's lyrics are appropriate for all ages unlike many of My Chemical Romance's other material. You are safe.

Auld Lang Syne

So looking back 2010 was a pretty okay year. I'll hit a few of the highlights if you're too lazy to just go back through and read my posts.
I finally broke down and saw the doctor and got a new MRI in February and went back on the juice (avastin) soon after.
I had great St. Patrick's Day party in March complete with a real after-party that was a smashing success. People in my singles branch finally started to realize how cool I am.
This summer I went Kayaking with FirstDescents a company that provides week-long kayaking and week-long mtn climbing camps for young adult cancer survivors.
In July I went to my 10 year high school reunion and saw some old friends. I also went to San Francisco to see my old roommate.
I went to Seattle for a couple of days with some friends, toured Safeco and got Francona's autograph on my Red Sox hat in September.
I moved to Utah in October to find a wife.
Thanksgiving in November with all my family except my brother on a mission.
Christmas in December.
Lots of good memories from this year. It's best to focus on and remember the good times instead of the bad, so I left out all that negative stuff. Here's to a happy new year!! May 2011 be everything 2010 was and more. Should auld acquaintance really be forgot? It's important to live in the now and plan for the future, but don't forgot the old long since.