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.