What up party people?!

I only have 9 more treatments left! They have reduced the area being treated and I am starting to get some energy and appetite back. I can’t tell you how great it feels to be feeling a bit more normal again.

I am planning a slow crawl back into fitness and will be going full boar after the fourth of July. For right now, I’m taking it pretty easy since it doesn’t take much to tucker me out.

I am also getting excited to get back to school after a year off. Classes start at the end of August so I better start studying soon!

I have missed a few days of treatment in the last couple of weeks due to a holiday and machine issues. I am currently up to 24 treatments, which means only 16 more to go!

I had a pretty rough start to last week, Katie thinks I slept for 14-15 hours on Wednesday… But I am feeling good enough today to provide an update. Speaking of updates, I have some orthopedic news.

I went in for a follow up with my orthopedic surgeon and have been cleared to slowly re introduce whatever sports I want to back into my life! He even had me take a little jog down the hallway today, and it felt so strange.

Once radiation treatment ends, I plan on stepping up my game in Yoga and learning to swim, so I can swim before class on school days next fall. I have much hope that the strength and appetite of this scrawny dude will return, but this time with a new and improved titanium hardware!

One third of the way through my treatment plan, just wanted to mention it.

Last week was my first full week of treatments. Including today, I am now up to 8 treatment sessions. Last week ran much more smoothly than my first couple of days, we only had a delay on Thursday. Now that treatments are more regular, the appointments are only lasting about 20 minutes and I am getting back into town before noon! Plenty of time for a relaxing nap, lunch and a yoga session.

I am starting to feel some side effects including fatigue and nausea. I spent all weekend just laying around and relaxing, seems to be what my body wants right now. My appetite seems to be slightly affected with me feeling full before I normally would, but I am still managing to eat pretty well. I meet with my oncologist tomorrow to discuss my side effects and concerns. Otherwise, I’m just plugging along. The best advice I have been given so far is, “if the body asks for it, do it.” So now, if i’m tired, I just lay down and take a nap. Seems to be working so far.

Radiation treatments started this week. Wednesday was my first scheduled day. The plan was for them to run some simulations on Wednesday and have the doctor review the results. That way when I came in on Thursday they could start with the treatments. This was a great plan except the fact that when I showed up on Wednesday, the machine was down and they had to reschedule my appointment. New plan, show up Thursday and they would do everything they wanted to do the previous day PLUS give me my first dose of radiation. Luckily a friend was already driving up north on Wednesday on other business and I just tagged along, so the drive was not a waste. Thursday I had my first driver whose sole intent was to get me to my appointment, hopefully it would all go well. It didn’t… We arrived and checked in early only to find out there was a scheduling problem and my appointment was going to be delayed an hour. I ended up being treated when my time came and after finishing the simulations, the treatment went fairly quickly. My first day receiving a dose of radiation was complete. I checked myself for strange glowing bits, found nothing, and headed home. Today I show up for my appointment and the machine is down again, but I was told “it should be operating again shortly.” Over an hour past my appointment time, I was treated. Now I am up to two doses of this stuff and I am more than ready for it to be over. Hopefully next week runs a little more smoothly.

We got word yesterday morning that radiation will be starting tomorrow. Jordan had to go up today for a simulation treatment so they can check all their targets. He will also get his daily appointment time today. If you are able to help with driving him up and have not let me know, please take this opportunity to do so by commenting below and we’ll get you set up to be on the schedule. The entire trip should take between 4-5 hours, depending on traffic to and from Loma Linda.

Thanks!

Hello everyone, Jordan here

So, I am two weeks out from my initial imaging appointment for my radiation treatments. They should have a start date for me within the next week. Once I am scheduled to start I can contact my driving volunteers and start organizing a calender. In the mean time, I am keeping busy with daily yoga classes, chores around the house and preparing myself for my return to school in August. My orthopedic injuries are almost completely healed up and I am up to 89% of my normal weight! I will be updating this page on a regular basis during my treatment to keep everyone up current.

For those of you who check here and not Jordan’s facebook for updates, he’s going in for his imaging at Loma Linda on Thursday for radiation treatments. He should be starting up in the next 2-3 weeks. Unfortunately, it looks like driving up to Loma Linda every day for 7-8 weeks is the only workable option for him, which will suck, but we’ll get through it.

In the meantime, Jordan went to the dentist and learned he has $5,800 worth of work that should ideally be done before he starts treatment, since the radiation will affect his bone regrowth and potentially his salivary glands.

Additionally, his physical therapy has run out and his orthopedic surgeon strongly recommended he start yoga to continue his physical recovery. Luckily, there’s a great yoga studio 2 blocks from us that he can walk to, and it’s the cheapest yoga studio in town. Unluckily, he’s STILL waiting on a decision from social security regarding benefits, and he’s used up his meager state disability funds.

So, he’s started a fundraiser to try and get these last few things taken care of. If you can help out in any way, with any amount, please visit his fundraiser page and help out: https://www.giveforward.com/fundraiser/k7b4/dental-and-rehabilitation-fund

Thank you!!

Jordan has had both of his post-op follow up appointments now.

Head and Neck

He’s healing well and his surgery site is looking good. He does a nasal flush twice a day to help break up the scabbing and keep the tissue healthy and moist while his nose continues to heal.

His sense of smell is coming back slowly, and he’s eating well. Only gained about 5lbs back so far, but he’ll get there.

Neuro

Final tally is in, and it looks like about 2/3 of the tumor was removed. He started with 20-21cc of tumor, and he only has about 7cc remaining. His brain stem has been decompressed nicely, and it’s already expanding out into the space it should have been inhabiting this whole time.

Next Steps

First off, they are not currently looking at another surgery. We’re supposed to meet with Jordan’s oncologist to review the MRI and confirm that the remaining tumor is in a good place to radiate, and Jordan’s neurosurgeon is presenting Jordan as a case study at a skull base tumor conference next month. Both of these could result in a different recommendation for another surgery, but it’s looking unlikely they will.

He’s having some issues seeing through his glasses, but since that’s probably coming from something in his brain and not his eyes themselves, he’ll be seeing an neuro-ophthalmologist in a few weeks (after his brain has had some more time to heal and adjust) to get new glasses.

He still needs to take it pretty easy on the exercise, so he should be starting physical therapy in about two weeks. When his therapy begins, we’ll be using the same system that Katie was using for food drops to schedule rides. If you’re not already using the system and think you could be able to be a ride-giver, make sure that Katie or I have your email address and we’ll set you up.

Radiation will probably be starting in March, I’m guessing. He needs some time to gain strength before he starts and the proton center isn’t quite open yet. His tumor type isn’t very fast growing, so there’s no real urgency in starting. Like with therapy, we’ll be using Lotsa Helping Hands to schedule rides to and from the proton center in Sorrento Valley.

He had a long weekend detoxing from the nerve pain meds and getting used to being at home. He’s having a hard time sleeping, so I’m off to talk to a pharmacist this evening to try and find an appropriate over the counter sleep aid that might offer him some relief as he gets back into a normal schedule.

This week, he seems to be pretty covered on people coming to keep him company and feed him. I’m not sure what next week will bring in terms of appointments and therapies, so we’re still playing it by ear there. I expect he won’t need much help around the house after this week, since he’s moving around pretty well already. As soon as his balance has him back on the cane, he’ll be able to carry things around again and be about 90% independent.

Similar to last time, I’ll probably update this blog less and less often now. It would be useful if he would update it, but he leaves it to me and between him and work and the dogs, I don’t always have time to update with his therapy victories or doctor visits.

He’s using his computer and phone and facebook, so he’s scheduling his own visits!