Welcome to Matt Cwiertny's Light The Night Walk Homepage.

It astounds me how all of you have come together to support this cause thus far. You have no idea in the world how much it means to me. I am currently fighting NK T-Cell Lymphoma with an EBV/HLH activation. Without LLS I'm not sure if enough is known about my disease to help me find a cure. Please help donate to make sure everyone has a good fighting chance to beat blood cancers into oblivion!

UPDATES:

Wednesday, Sep. 9, 2009. Yesterday was quite a day. We woke up at 430am and headed for an early platelet infusion before my brain biopsy. They knocked me out and next thing I knew I was in post-op, head wrapped up tight. My blood pressure was near 180/110 so they had to control that before I got to my room. Lots of pain meds and bp meds later I got to my room. I got one chance to speak with the neurosurgeon after the operation. He suggested the bump in the brain was in fact a tumor. It had even grown 30% in the last couple of weeks. Unfortunately, the tumor is right on my 5th nerve, absolutely destroying the sensory nerves in my left face and mouth. I can't feel anything on the entire left side of my face. He tried to biopsy as much as he could to control the size of the tumor. Unfortunately any more biopsying of the tumor would further damage the nerve, which he said was 10X larger than it should have been. When I woke up from the anesthetic my numbness was a little worse, and ear ringing was significantly louder.

It was a tough night of painkillers and lack of sleep. They had me pretty much locked to the bed in more ways than one. It was like ICU all over again, but thankfully I didn't have any panic attacks. They came in every 30 minutes for neurology checks so I'm running on no sleep. Were on a new floor, the 4th, and have a whole new team of knucklehead nurses who keep goofing up my pills etc. Its been more frustration. I have since been 'unchained' and walked around, so I may be home as soon as tomorrow when the bandages come off. We have yet to hear for a plan of radiation, but we will know soon. Thank you for your prayers, thoughts, and support. It's a really tough time right now.

Wednesday, Sep. 2, 2009. A miscommunication caused by Chen's abscence last weekend has delayed us further. Todays 1 hr visit turned into 5 hours of pre-op tests. Now an MRI is scheduled friday, and the biopsy will be next Tuesday the 8th, delayed EVEN MORE. I will need platelet transfusions before since this is brain surgery. I will remain in hospital til that next weekend or further and radiation will not be able to start on a biopsied brain until about a week or two after the biopsy, not the 4 days Dr. Chen told us who should know better considering he should have dealt with lymphoma/brain biopsies before since lymphoma is common in the brain, or so hes told us. I think were all a little upset with Dr. Chen today, myself... a lot much.

Tuesday, Sep. 1, 2009. Seems like I just can't catch a break lately for at least a little good news. At least my numbers are hanging in, with 13 WBC's and 69 platelets. My liver numbers were up today, and my blood pressure at a freakishly high 160/110. Feet still swelling bad lately. Left side of my face is about 100% numb and painful so its been hard eating, shaving, etc. We needed IVIG today and Keri (physicians assistant) was about to set us up when Dr. Chen informed us that I can't receive IVIG payment from insurance unless I'm EBV positive. Kind of scary because now I'm very susceptible to infection with low IVIG numbers.

Unfortunately that wasn't even the craziest of wacky news. Chen for some reason has some intuition now that even though he has ordered the biopsy and delayed so much, he's "90% sure" that is lymphoma. If it is lymphoma of the brain, it can spread easily to other parts of the brain, so now he also wants to go back to the initial plan of the biopsy and then 3 weeks of FULL BRAIN RADIATION again even though there is only one definite tumor up there. He's upping my steroids again to try to help alleviate my face and ear, but thats assuming it is lymphoma. Steroids would make a brain infection worse. The even worse news is that the full brain radiation isn't localized, so it will most likely hit the nerves close to the tumor and maybe even worsen my nerve symptoms/numbness. That's all. Tomorrow we see the neurosurgeon again to prepare for Thursdays biopsy, where I will then remain in the hospital for about a week and hopefully begin some sort of treatment for all of this.

Thursday, August 27, 2009.

I just don't know what to say right now... I usually try to refrain from complaining or being negative on any blogs or updates of the sort, but lately I've just been too frustrated not too. So today I vent. Yesterdays update is now sort of void. Dr. Chen has called and has disagreed with the neurosurgeon. We must wait a whole week to then have a biopsy, to OFFICIALLY nail down what is wrecking my 7th and 8th cranial nerves in my brain, and then another week for a potential treatment (If the biopsy finds lymphoma, we continue with localized radiation plan, if its an infection like Dr. Chen now suspects, we would simply go with an antibiotic). Thats potentially 2 weeks long added to the 10 weeks my left side of my face has been slowly numbing and paralyzing.

My frustration solely lies in the system. Dr. Chen knew repeatedly that I have had a growing numbness. I made sure to tell him it was slowly worsening. But he had to go by the book and give 2 chemos (1 which was incomplete). Now that we have seen a neurosurgeon, it is even more frustrating because he expressed urgency that it is time to suppress the tumor/infenction now because it may be too late to save the 7th and 8th nerves in my brain. Which means I may have to deal with facial numbness/slight paralysis (7th nerve) in my left face forever. Same with the blaring left ear (8th nerve). To wait 2 more weeks when its hard enough to even get through a day lately with any energy is very frustrating.

The Dr's have no clue if the nerves will heal themselves, as that in itself takes months to resolve and there are no known therapies for healing nerves. Even scarier, if this tumor continues to grow, it could hit other nerves such as one that controls swallowing, or it could even get close to the brain stem, but it shouldnt be growing that fast.

It just adds to the list of things that might have been prevented if it wasnt for so much waiting for the system. We waited months for the siblings to be tested for bmt matches while I received damaging chemo to my body that was becoming so ineffective that Dr. Chen told me if I couldn't stay in remission with it they wouldn't be able to give me the BMT, essentially giving up on my chance to survive this. We also waited too long for sperm donation and that became a useless cause, trying after a 6th round of chemo or so.

Add all of that on to my numb feet, lack of being able to run, eye pain and tearing, headaches from the tumor, biting my tongue and mouth from it being numb, no hearing in my left ear and a ringing so loud I can barely hear out my right, or sleep, no hair, back pain, hormone issues, weak muscles, constant liver/kidney monitoring, high blood pressure, and bone pain, I can't help but complain today. It is all so frustrating.

My only hope in this is that all I have been through with EBV/HLH and T-Cell Lymphoma will help others learn and allow for no one else to have to endure all of this crap that I have had to fight through since October of 2007 when I had my first bout of EBV attack. I'm still combating all of this and accepting of this journey, but I can't say it has been an easy fight.

Wednesday, August 26, 2009.

Today we received VERY interesting news regarding my brain tumor. It was discovered by the radiologist that the tumor had in fact been around since January, not June during my EBV flare up. It has been flying under the radar, growing at a speed that we cannot determine. Now that we know it most likely is not an infection, a biopsy (brain surgery) will probably not be needed, but this will have to be decided by Dr. Chen who is out of town until Monday unfortunately (seems I get screwed by these 'vacations' often). Good news also is, instead of 3 weeks radiation, my dad has discovered what is called 'Helical Tomotherapy'. It is only used in 4 hospitals, is relatively new, and is localized 1 day radiation therapy that the radiologist claims will 'Melt the tumor away'. He also claims it may not be too late to save the audio and facial nerves that are causing so much discomfort to me when the tumor is radiated. I'm still a little scared because the localized radiation will involve me being awake and literally having two screws put into my head so that I do not move a millimeter during the process (any slight movement could cause damage to other parts of the brain you don't want to mess with). I still think it beats 3 weeks of generalized brain radiation. We will get more word from Dr. Chen probably soon and get the latest EBV results then as well.

Friday, August 21, 2009.

So I guess I will start with the really good news first! My numbers, minerals, and everything look good, so I will healthily be making the Light The Night walk tomorrow night at Anaheim Stadium! We are the top family/friends team and will be under the big red hat. I plan on being there around 5 and can't wait to just relax and see everyone that I haven't been able to see in a long time. Of course I'm still a bit out of shape, but I should be in good condition for tomorrow.

As far as everything else, we had my MRI and PET Scan results back today. We have been waiting just about a month and half for these results since we have had 2 rounds of chemo to see if we could fight these 2 brain / 1 leg tumors. Having my left face still being completely numb and my left ear deaf, blaring with a maddening tinnitus, I figured the chemo may not have cured the 2CM brain tumor that appeared from nothing but an EBV attack.

The knee tumor is now gone from the initial PET scan report. Dr. Chen also suggests the the 2 brain tumors are probably now one, but it is UNFORTUNATELY still present and PET active, meaning malignant. The good news is the 2CM tumor has NOT gotten bigger in the last month and a half, and is still in an area of the brain that is not too dangerous.

The game plan now is to check with a neurosurgeon next week about how we will go about this. The thing is we don't know if the brain tumor is exactly Lymphoma or if it is maybe even just an infection. It grew to 2CM so quick and stopped, so it is a strange occurrence. They are going to admit me to the hospital in 2 weeks to do a surgical procedure on the brain, involving cutting into the brain to biopsy this tumor to pin down what it is. That will take a week or two of recovery.

If determined to be lymphoma, we will go about with a 3 week radiation plan. I'm not too keen on the surgery or radiation, as both are scary procedures that heavily effect my brain and even my cognitive function, but it is all a part of the journey. We have to hope radiation will be effective, as surgery isn't really an option to surgically remove lymphoma from the brain, as it can just easily spread to another part of the brain again.

After that, we look ahead to New York (late OCT, early NOV?) and a cure. Something will beat the shit out of this 2CM brain tumor, we just aren't sure what yet.

That's all. Once again hope to see you all at the walk and hopefully I don't have to tell this story a bunch of times. I guess that's why I wrote this. But tomorrow will be fun and I'm so glad I'm able to make it!

PERSONAL LINKS:

(for more thorough scientific analysis and updates into my disease, consult my DADS caringbridge website.)

Here is some great background information regarding Andrew McMahon, his music, and inspiration:

http://en.wikipedia.org/wiki/Andrew_McMahon

Here is some information on how well the Jack's Mannequin Team did last year. I have been a fan of Andrew's long since before either of us had to deal with anything close to battling blood cancer. He is a great man for everything he has done for our family and the LLS: http://www.reuters.com/article/pressRelease/idUS166531+07-Nov-2008+BW20081107

So please make a donation to support my participation in the Light The Night Walk for LLS and help save lives. Be sure to check my Web site frequently to see my progress, and thanks for your support!