This past month

I'm not sure how to really cover everything that's happened in the last month since my post about the whole brain radiation treatments. A few days after we learned about the brain, I was informed by my doctors that the disease had begun spreading rapidly within the abdomen again, only this time, they were out of ideas.

I'm not sure there is any way to react when someone tells you that he believes you only have a few months to live. It's not as if I was completely blindsided. I knew that if my latest chemo regiment failed, there would be nothing left to try. But finally hearing the words is a different story. I don't think there is anything that can possibly prepare you for those words.

I tried to stay positive, reminding myself that this is just one man's opinion. He's not God - he doesn't get to decide what ultimately happens to me. Unfortunately, that is a great attitude to have, but an unbelievably difficult attitude to maintain.

I had mixed emotions, but fear and grief were not in the mix. I stopped being afraid a long time ago when I came to the realization that all I can do is give my best effort and the rest is out of my control. The same thing with grief. The strongest feelings I had were anger and frustration. I always believed, and to some extent I still do believe, that when a person gives his or her best effort in life, that person will achieve his or her goals, no matter what.

I have not cheated myself in this battle in any way. I have done all the treatments, never taking the easy way out. I tried my best not to complain, just to keep my heart beating. I guess I never thought that someone who does things the right way can be denied in life. Maybe I won't be denied - there is always hope.

But like everything else in life, this has been a learning experience for me, and I know realize that a person can do everything right and still not get his way. That's just part of life. I think the important thing is how to deal with those setbacks. Sadly, all the work I've put in to this point to get better would become completely meaningless if I throw in the towel now. It's just not the right way to live. It's not how we get rewarded. I think it's called faith.

So, I will continue fighting this battle the only way I know how - head on. I have a lot more to write about this past month, including my trip to India and my new treatment. Be back later this week.

Whole Brain radiation

This is going to be a quick update. I just wanted to let everyone know that my week of scans did not get off to a good start. The brain MRI from yesterday showed yet another tumor growing on the right side, the 4th one since January and 3rd since June. As the frequency with which these tumors are growing is becoming shorter, my doctor has recommended that I put aside gamma knife radiation and do something to try and treat the entire brain. So, I will be starting whole brain radiation shortly.

I'll explain in detail how it works in my next post, but the hope here is that the tiny microscopic cancer cells hiding in my brain, slowly developing into tumors, will be killed. This way we can completely stop, or at the very least reduce the frequency, of tumors from growing in the future.

Not a great day for me or my family. We were hoping this day would not have to come where we would be faced with choosing this treatment, but it's not in our hands. It just seems like the harder we try to get better, the more I do to get out of this, the worse the situation gets. It's a very difficult test and it makes you question all your beliefs at one time or another. Be back this weekend...

Update

I finished my fifth cycle of chemo this morning. I will be taking a few scans next week to determine exactly where I am in terms of disease in the liver, the brain, or anywhere else in the body. Last time we checked, the liver tumor had shrunk from 5 cm to 1 cm (a very good sign), so here's hoping that next week's scan shows that it has completely disappeared.

As far as the brain goes, I completed my gamma knife radiation treatment exactly 3 weeks ago today, and outside of a few minor side effects, it went well. We still need to check the tumor markers to make sure it was successful, but it worked the first 2 times in different areas of the brain, so I don't see why this time would be any different Next week's brain mri will also reveal if anything new is growing in the brain.

As I've mentioned in my previous few posts, the chemo is really starting to catch up with me now. It has been accumulating in my body since started this regiment back in May, and many of the side effects are beginning to linger for longer periods of time, particularly those related to my nervous system.

Neuropathy in my hands and feet has been the most difficult of my health issues as it effects every single thing I do everyday. Right now it is at a manageable level where I can live my life and do mostly all the things I would normally do. If it gets worse, it would make a lot of crucial and simple tasks, like writing, typing, driving and pretty much anything requiring fine motor skills, very difficult.

I think we're getting close to the finish line, though, so hopefully I won't need to put much more chemo into my body. I want to let the healing process begin.

I'll write more next week as gather more information. Finally, I want to say how happy I am about the Michigan football team's season opening win this past Saturday. If you know me, you know I'm a huge Michigan football fan, and that game was fantastic. I haven't been able to enjoy college football the last 2 seasons because I've been in hospitals going through treatments, but hopefully this year will be different. Go Blue!

Sacrifices of my family

I went to see my doctor this morning. I was supposed to have my next chemo day tomorrow, but because of some low blood counts, my doctor decided to push it to next week. More chemo will reduce my counts to possibly dangerous levels, and as I am just coming off a gamma knife brain radiation treatment, my doctor doesn't want all the hard work and sacrifice we've put in up till now to be ruined because of some other serious complications that could arise. Good decision.

So that means 4 straight days with no doctor's visits. What will I do with myself?

My family is busy fasting as it is Ramadan for us right now, a month that demands incredible sacrifice and patience. Just the fasting alone is a challenge, given the long days and the intense heat, but my family (my parents and brother) have been asked by God to go above and beyond, which they have and continue to do everyday.

This is now the third Ramadan we've spent with me going through some kind of treatment. In the fall of 2007, I was staying at UCLA hospital for three weeks for a stem-cell transplant, all 3 of which came during Ramadan. I remember how difficult it was for my parents. The room was small and dark, but I was suffering so much from that treatment, they decided to sleep there on an uncomfortable couch not even big enough for one person.

Every morning before sunrise, as is required during Ramadan, they would wake up and take a little food out of the tiny fridge in my room, heat it up and eat it, say their prayers and then try to catch a few more hours of sleep. Then, after sunset, they would do the same thing. They never ate well, just enough to barely fill their stomachs, and it was mostly all leftovers from the small room fridge.

They were, of course, exhausted and mentally drained from the fasting, and physically sore from their terrible sleeping arrangements. As if that wasn't enough, my treatment was not going well and I was very sick, so they were incredibly stressed. At many points I wasn't even well enough to sit up and talk to the doctors, so they had to do everything for me.

To make matters worse, I would end up waking them up in the middle of the night to help me with different things, so they really never slept for more than a few hours at a time.

I was often awake when they would get up to eat, and I'd watch them with sadness, wishing they could have been in a better situation. Somehow, amazingly, they made it through the month successfully, their faith and courage pulling them along.

Then, in the fall of 2008, we had to leave in the middle of Ramadan to fly to Indiana for another stem-cell transplant. None of us wanted to be displaced from our home and community during the month, but we had no choice. But again, my parents toughed it out, my dad never missing a single fast or prayer. He was a machine. I handled the treatment in Indiana far better than the treatment in UCLA, so my parents were slightly less stressed. They even let me out of their sights a few times, sleeping back at our temporary apartment, but then coming right back in the morning.

And I haven't even mentioned my brother, who was going through an intense pharmacy school program both years and didn't have the luxury of being with us. He had to do both months alone living in his dorm room trying to focus on his studies while the rest of us were going through tough times, which I know, he was constantly thinking about.

I guess I just wanted to write that I'm amazed at the sacrifices my family members have made these past few years, especially during Ramadan. Most people could not possibly imagine the determination it took to make it through those two Ramadan's with so much additional stress and pressure without breaking down or missing a fast.

I guess some would say that if you have no choice, it just naturally comes from inside of you. But I would argue that my parents and my brother had a choice. They could have chosen to not fast and avoid the additional physical and mental burden. But they didn't, and that makes me very proud to be part of my family.

Because when you have the discipline and determination to push through something, no matter how impossible it seems, you can push through it, and you will hopefully come out the other end stronger.

I'm hoping the remainder of Ramadan 2009 is a much less eventful year, where the only thing my family will have to contend with is not eating or drinking from sunrise to sunset. Piece of cake, right? I shouldn't have mentioned cake.

Gamma Knife - Third Time's a Charm

I completed a gamma knife radiation treatment this past Wednesday to fry my latest brain tumor - the third brain tumor I have now had develop. The gamma knife radiation technology is quite amazing, and has made the treatment of my brain tumors a simple, relatively pain-free half day procedure. As I mentioned in my previous post, the big outstanding question right now is how many more brain tumors might I get, and unfortunately, nobody knows the answer to that. Having the gamma knife done certainly is not as bad as a lot of the chemotherapy regiments I have been through, but that doesn't mean I like walking into that room and having an invisible x-ray laser pointed at my head.

I will resume my chemotherapy on Monday, as we continue to fight the battle with this disease within my body and try to completely eradicate all traces of disease from my liver.

Today is the beginning of a very holy month for my family and many of my friends, Ramadan. Unfortunately, due to the need to keep up my weight and strength while going through chemo, I will not be able to fast, as I'm supposed to do. But during this spiritual time, I do hope that my prayers are answered and I am granted a second chance at life. A chance to accomplish so many of the goals and realize the dreams I have for myself. I think that those who patiently persevere through difficult times are rewarded, so I will continue doing my best to fight on.

More Answers...More Questions

Hey everyone. Well...I mentioned in my last post that I would be going through a series of tests to figure out exactly why my tumor markers started going up again. Turns out there is some good news and some...not so good news (I don't like saying bad news).

I was worried that the current experimental treatment I've been on had failed and the cancer had continued spreading in my liver. Turns out I was wrong. A CT scan taken this past Monday actually revealed that the largest tumor had shrunk considerably, and smaller spots that were suspicious for disease had disappeared completely. Great news, right? Yes, except it doesn't explain why my tumor markers were going up.

Here's the not so good news. Since the lungs/abdomen appeared to have significantly improved, my doctor had me check the brain again with an MRI, and one tumor has been spotted. I will be going in next Wednesday to have it treated by gamma knife radiosurgery.

Now this isn't my first rodeo...it's the third brain tumor I've had, the first of which caused a major seizure, and my third gamma-knife radiation procedure. If you're wondering why this has happened to me 3 times now, it is because at some point in the past few years, tumor cells entered my brain and nested there in various locations, most of which laying dormant. Now, these tumors are manifesting themselves little by little, and there really isn't anything I can do about it right now. My best strategy is to monitor and treat on a case-by-case basis, hoping that sooner or later they stop coming.

To be fair, there is one thing I could do, but it would involve radiating my entire brain and putting me at risk for serious side effects later on in life, and I'm not willing to make that choice unless it's the only one on the table, especially since it doesn't guarantee that future problems won't arise.

I mentioned more questions in my blog post title. There really is only one question in my mind - how many brain tumors will I have to deal with? And the answer is, I have no idea. Nobody does. That's part of this whole "being patient" thing I've had to learn how to do. I need to have faith that one day they will stop coming. It is possible.

So, to recap, I thought my treatment was failing, but it turns out my markers are increasing due to the brain tumor. The treatment itself appears to be working, and the plan is to keep going, as long as my body can take it. We'll treat the brain on Wednesday of next week, and then continue to monitor it through MRIs and treat on an as-needed basis.

More next week.

Patient perseverance

The hardest part of facing difficult circumstances in life is not knowing the outcome of those circumstances, particularly when it's a matter of life and death. In my case, dealing with the side effects of the treatments I have been through and facing the constant ups and downs of this battle would have been much less difficult if I knew everything was going to be ok. But, that's not how things work in this world, and I don't know the outcome. So how do you deal with this stomach-churning, stressful uncertainty? I guess the only way is patient perseverance.

Over the next few days I will be getting tests done to figure out exactly where the cancer is, if it has spread within the liver or from the liver back to other parts of my body, and how quickly I need to act. Then next week I plan on meeting with a doctor to discuss treatment options, however wild and crazy they may be.

Aside from continuing to be proactive to find solutions on my own, there's really nothing else for me to do this week except wait. There hasn't been much for to do in the past few years except wait. That's not to say I haven't done anything with my life, but there's only so much you can do when a doctor's appt, ct scan, blood test, surgery or chemo is waiting around the corner.

So how do I plan on waiting it out this week without letting myself get too worked up? I'll just do what I've been doing for some time now, pray and try and keep my mind still and peaceful. I'll probably throw in some deep breathing as well.

There's a big difference between patient perseverance and stressful perseverance (I'm not sure if that's a real thing, but I'm saying it is). On the surface the person may not appear frazzled or scared, but he could be bouncing off the walls in his mind with fear. Patiently persevering helps to keep the body calm, which is really important.

Obviously, there's no easy way to handle a week like this, but I hope, through my prayers, I can continue to get through it.