John's New Challenger: Cancer

 
----Update 11/28/19----

Happy Thanksgiving Everyone,


What are you all thankful for this year? Me, I am thankful for the people in my life. I want to express as much as I can that this Thanksgiving I am even more thankful than ever.  That may sound weird to say as I’m fighting cancer. Yet, I am thankful for all the love and support I have received over these two years. I’m not alone in this fight for my life--so thankful. 


After talking to many of you, I have come to realize how much I mean to people or differences I have made in their lives more than ever. Knowing that I have made some difference in people’s lives motivates me to fight harder than ever before. I am thankful for the hardworking teams at Keck going above and beyond what I expected from medical groups.I’d like to be more thankful for my insurance putting my health ahead of their bottom line, but we can’t have everything, I guess.  And I’m thankful for my mama. She loves me like no one else. I’m thankful/grateful for her love, her strength, and her care for me. 


There is still plenty of fighting to do. The results from Tuesday’s MRI are back. My radiation oncologist called me and asked to move up my appointment. It was not good news. The growth in my head is still there and has shifted. One additional growth was discovered behind the first one, and two smaller ones at the back of my head. A fifth one (yes 5) to the left side of my head. So now we know this last one is what is causing my left eye to swell and giving me sinus issues. 


My mama and I are so thankful for my oncologist. He didn’t waste any time. He had me fitted for my headgear and will start another 10 day set of radiation that starts next week. Hopefully that takes care of those growths. We are still waiting on the PET scan and I have submitted an appeal with the insurance company for it and so has my primary oncologist. This will determine if we need to continue chemo. Unfortunately, chemo wouldn’t affect what’s up in my skull so moving on with radiation.

Very likely most of the issues I have been having these last few weeks are related to the growths in my head. I hope after treatment most of these will go away. Though I will have some side effects with short-term memory issues and others related to the radiation treatment. Though I will have some side effects with short-term memory issues and others related to the radiation treatment (wait, i think I already said that). On the bright side, the growths are outside of the membrane around my brain and not in my brain. So most of the treatment won’t be blasted into my brain, but will be skinning it. I will lose my hair again, but I trust my hair to be like weeds and grow right back just like before.

As we close out the year and enter the new one, funding will become even more important again. I maxed out my 2019 out of pocket responsibilities. They will reset In January. So I have to start making copays again for procedures/exams/scans/prescriptions/er/ect. Please help me out by sharing my GoFundMe page and getting the word out. Anything you can chip in financially is greatly appreciated. There are many ways you can help me out and we appreciate anything you can do. For those not wanting to use GoFundMe you can PM on Facebook for other methods to get funds over to me.

I hope everyone has a good Thanksgiving and if I don’t get another update out on time, I hope you have a great Holiday of your choice. Christmas for me, so I’ll say Merry Christmas hopefully I’ll have more good news before hand and I’ll be clear headed enough to make an update. I will try to get more updates out regarding my treatment and how things are coming along.

Happy Holidays with lots of love,
John

----Update 11/06/19----

Hello Everyone,

It’s been a while since I’ve given a proper update.


I’ve had a pretty hard time since then. Financial collection agencies are making it difficult for me to have access to my money and my health decided to take a plunge recently that landed me back in the hospital. Looking back at the days leading up to my hospitalization, this entire situation has just been consuming all my mentally, spiritually, and, of course, physically energies. So my body went down for the count. But my momma didn’t raise no quitter.

Here are the details, I ended back at the hospital for chest, upper back, traps, shoulders, neck, and head pain. I left with there with almost 3 times as many medications prescribed to me than when I entered. At least for now, I am doing much better with pain management. Prior to going in to the hospital, I had been struggling getting around even with a walker due to the pain.

Now, my daily step count is gradually increasing. I’ve gone from 200 steps a day (bathroom and back) to averaging 2000 a day. My next goal is 3000. As I attain my movement goals, I’ll drop the weight I’ve gained thanks to my forced inactivity. It also doesn’t help mental state even though I know I can’t do much about it.

Chemo is paused as we wait to do a PET scan and an MRI. I am still doing immunotherapy. I am still quite weak and in recovery mode. Falling asleep at my desk or random locations and stuff. Here’s the weird/crazy part. I want to stay awake during the day, but I fall asleep. Then I want to sleep at night and stay up. Insane, party of one (me). I guess it's better than not getting any rest at all.

Financially, momma and I have been able to stay afloat. Sometimes it feels like our heads go underwater, but amazing people like you have reached down and pulled us up. People helped out when my Credit Union locked my account down for not paying my credit card with them. Thank you for that rapid response it was a huge help.

I’ve resolved the issue with the CU and retrieved our money. To be honest, that CU situation came out unexpectedly and was a giant source of stress for us; them holding my money hostage. I went to the CU in person to literally plead that they give me my money.

Moving forward, I’ve opened another virtual bank account and a virtual credit card service that ties to said bank account to pay for essentials, but keeps everything several steps away from our money.


I have been advised to try for SDI (Social Security) and other financial help. Once I get my mental state better under control I’ll start the process. I need to be disabled for 6 months and I'm a couple weeks away from that.

Speaking of mental state. That is one of the reasons why I haven’t written much. I haven’t been “In the mood” for anything. I hit a loop of depression for a bit as I recovered from the pain. The increased meds also messed with my head.

The good news is that since you’re reading this, it means I am coming out of my depression. I have even started doing some coding, modding stuff, and other busy stuff I find fun. Just not social fun. Though I plan to fix that as well soon. I have been on an emotional rollercoaster and I haven’t been wanting to drag anyone into it.

Once again, I do want to say a big THANK YOU to all of the people supporting me in many different forms. I don’t say this enough, but I love you all. I appreciate everything that everyone has done. Once I get my strength back everyone I can get my hands on is getting a Big John You’re Now a Rag Doll Bear Hug.

Love,
John

 ----Update 9/23/19----

Hello Everyone,

It’s been over 3 weeks since my last major update. Guess who is undergoing more rounds of chemotherapy??? Me!!!!!!!  I just finished another round of chemo last week. I’m not gonna lie; it was a pretty hard 4 weeks. I’ve swollen up quite a bit--like 15-20 pounds swollen of just water weight. Because of the swelling, I lost functionality in my right leg and hip due to the added muscle/nerve pain from the swelling. I’ve been fighting with the pain for the last two weeks. Until this past Sunday, I’ve been needing to use a walker to help me walk. 


Treatment wise, we got the results from the CT/PET scans and they show reduction overall. I am still waiting to do an MRI of the brain to see how that looks. If everything continues to look this good we may be stopping chemotherapy by November and moving on to just immunotherapy. I do need to start some Physical therapy especially after this last episode where I lost quite a bit of mobility.

Mentally, it has been harder than before. I’ve found different ways to deal with some things, but not being able to do normal everyday stuff without struggling for an hour to even get out of bed and into my computer chair for days has taken some toll. Little things irk me and I haven’t been able to deal with some big issues that need to be taken care of. I need to finish filing/refiling with calfresh cause they don’t seem to understand that there are days where I am so sick that walking into their office is not an option and that goes for taking phone calls where they make one single attempt to call you and no matter how many times I called back no one ever picked up and I just end up leaving a message that is never returned. The other is I am starting to deal with bill collectors for stuff that I deemed can go without payment(maxed out credit cards ect). Once I can talk to a pro about this I should be OK as I can hand it off to them to deal with as we figure out which direction I will end up going bankrupt or doing some credit restructuring. Not to mention I still need to file for taxes as my Oct extension is coming up. Don’t really know if I’ll have the mental capacity or will to do all this and more, but it needs to get done.

Since I was using credit to cover a good portion of expenses including co-pays having them maxed out and no use of them even without having to make payments to them will cause a tighter flow of money. Fortunately, for the most part I think I no longer need to make copays as I maxed out my insurance. I’ve seen a huge difference there with my prescriptions. We’ve saved on gas and parking for these last 3 weeks. I am looking into and reworking my budget again to maximize the cash on hand for emergencies and avoid anyone attempting to place a lien on my bank account or disability.

It is still thanks to everyone that I am as far along as I am. I honestly wouldn’t have been able to make this far. Emotional support from all my friends, family, and random strangers that tell you, “You got this!” does help. Just seeing, chatting, and yes even that share, <3, meme, or thumbs up makes a big difference on getting through to the next day. Just like sharing, liking, and/or financially supporting this campaign also makes a big difference. We are halfway through the goal I set of the $10,000 to get me through the rest of this year. With the way our budget has been looking as long as we keep up this pace we should be stable going into the end of the year.


Thank You for your continued support,
John

----Update 8/31/19----

Hi Everybody,


Here’s the latest news on my journey back to health. This week marks the end of my third round of chemotherapy and radiation. Each round was 3 Days every 3 weeks of chemotherapy and 3 sets of 10 rounds of spine radiation. This has certainly taken its toll on my body and spirit. In simpler terms, I feel knocked out. 


To give you an idea, Wednesday was a full day event from bloodwork, doctor visits and several hours of chemo treatment. We left home at 8 am and didn’t get back home until 6 pm. That exhaustion has carried over to Thursday’s treatment. Fortunately, it was a quicker day, but the effects hit me harder than the Wednesday (probably due to lack of rest). 


I got plenty of rest Thursday and Friday there were plenty of things that had to be done after chemotherapy. Like brunch with a friend (super important), I miss my friends. Then DMV for my license renewal I lucked out with getting an appointment the same day and near the doctor's office.


I still drive on occasion. Mostly it’s on the way to treatment. This helps reduce mama’s stress load where I can. I have the best mother in the world! She’s been my rock, my caretaker, I don’t know what I would have done without her here. Please send her good vibes of strength and calm. She’s strong, but still. She’s seeing her son in a bad way, and I know that it’s difficult for her.  


For now, we get a two-week break from medical procedures. Afterward, I’ll have new MRIs taken to see how the mass in my head is reacting. Its reaction will determine how the medical team will move forward with my treatment. Scary stuff. I hope it goes the right way. Thank you for your thoughts, good vibes, and prayers.  


I was able to go out and conduct some anime convention business. It’s one of my passions. I visited the convention for a few hours, greet clients, friends, and my team. I was glad to see everyone’s faces. I was able to walk around a bit then ended up using my wheelchair for the rest of the night. As I’m usually resting a lot at home I didn’t notice before weak I’ve gotten. Health permitting, I’m doing what I can to build strength. I promise you, I’ll keep pushing through the exhaustion rebuild what I lost.


Mama and I are very grateful for everyone’s financial support. The silver lining of having so much in medical bills is that I’ve hit the max amount of personal financial burden. I mean I haven’t paid all the bills, yet. But I’ve collected enough that the rest won’t incur a co-pay. Until treatments resume, not having to go to radiation daily will save on gas, parking, and the miscellaneous expenses that come with it. 


Unfortunately, the funds coming in from our limited income are not enough to get us through without a bit of help. Our savings and such are about to run out.  At this time, if you have the means and willingness to donate, we would greatly appreciate a donation of any size it. Those $1 donations add up. If you cannot help financially, we would love a share or a mention in your social circle. We’ve already been touched by everyone’s warmth and generosity and it pains me to be in this situation. Thank you for the time you’ve given us. 


Finally, Monday is my birthday and I’m looking forward to this one. It’s a holiday and I have signed up for all the newsletters of restaurants ahead of time. Gonna run around and get all my free birthday yummies as long as my energy reserves hold up.


Sincerely grateful, 
John

----Update 8/14/19----
Hi Everyone,

I hope you are all doing well and enjoying the time of transition from Summer to Fall. Sometimes time passes by so quickly, and other times much slower. In regards to my medical treatments, I have been making steady progress. Backstory: since October of last year, my mobility has been degrading, in spite of my efforts to alleviate them. By mid May I couldn’t sit, stand, laydown, or do anything in-between without some kind of pain.

Now, after 20 days of radiation on my spine and 2 sets of 3 days of chemotherapy, there is enough improvement to where I think I can taper my stronger medications. While a milestone was met we are still going forward with more treatment.

Chemo still has me mentally clouded a bit. Fortunately, my appetite and moral are up. I have been doing plenty to keep things I can’t control off my mind. Other burdens are minimal at the moment letting me focus on recovery from the strain of treatment.

I still have another 10 rounds of radiation further up my spine (C7). It’s another spot of the cancer growth that won’t give up. Since it’s so close to the brain, it has been causing some neurological issues, but regular stretching and mindfulness about them has kept them to a minimal.

I have more chemotherapy to look forward to at the end of the month. If I no longer need radiation I think we’ll be adding on immunotherapy on top of the chemotherapy. Which I hope causes no problems with my past medication induced Lupus. All my doctors are aware and the team at Keck and Norris have been amazing. I expect all good things to come.

Overall it is a huge improvement from where I came from. Everything so far has been trialing, but not something I couldn’t overcome. This is thanks to all my family, friends, medical team, associates, and random strangers Helping out in many ways. Even if it's just passing words of encouragement. Helping me get my meds on time. Getting mad for me. Taking that extra moment to make sure things are getting done right. Even my financial burden while it hovers above me I can see the same people helping me prop it up so I can climb out when the time allows. I know that it won’t come crashing down to crush me as I feared.

Grateful as always,
John

----Update 8/04/19----
Hi Everyone,

I’m still here on the road to recovery. It may be baby steps that I’m taking, but I’m glad to be moving forward: and that’s what matters, right? Overall, I am feeling better than I was 2 weeks ago. Yes, I have limited movement and pain in my joints, but it’s better than before. I’ve requested physical therapy to see if I can start getting my mobility back. They responded saying they will allow me to do this after they see the results of my latest MRIs. Once I get my results and they clear me of anything that may require treatment by an oncologist (the cancer doctor) I can begin therapy.

My radiation therapy is still happening every weekday until August 6th. Then on August 7th I will start my next round of chemotherapy. This will go on for 3 days. I’m preparing myself mentally for the coming hair loss and other side effects this round chemo could bring. I’m working on boosting my immune system as much as possible before then.

I had a brain MRI done last Saturday and the doctor gave me the results. I do have something there riding on top of my brain’s membrane and I have a bump on my skull to prove it. As I am not having any neurological issues we are going to wait and see how it reacts to chemo. If it has no reaction to the chemo which is ideal for me as it would mean it is not cancer, but still could present itself to be a problem for other reasons. If it does react to the chemo we wait till the chemo shrinks it enough to hit it with radiation. I guess I will be able to tell without an MRI if the bump shrinks. I’ve hit my head throughout my life enough times. So it may not be cancer. It may just be some sort of scar tissue.

As it comes to spending. I’m still dodging most of my medical bills. At least those that don’t make me pay up front. I’m working at creating payment plans or at least delaying them until I start working again. Unfortunately, at this point I have lost my job. As I work as a contractor via an agency I just recently heard that they started looking for someone else to come in. I understand it. Projects can’t move forward fast enough without without sufficient personnel. So I may need to make a preemptive move and start looking for work I can do from home as soon as I feel like I can start taking on some work. They did say if I am well enough to come back in by December when they negotiate a new contracts they will be happy to take me back. On the bright side this means more pay for me at that point.


Once again I want to thank everyone for your continued support. We (my mom and I (and Po)) really appreciate it. It’s hard to express how much this means to us. Thank you.
 

----Update 7/23/19----

Hi,


Today marks the last day of time I’ll be going in for this round of radiation treatment. My next round of radiation will be in my mid-back region is starting tomorrow. To prepare for this they had to get a fitting done on me. This is usually done by laying down on a bed of an air filled bean bag to hold me in place and then mark and measure me and they take the air out to fit it to me. Since we had the bean bag already we went right for the CT and sped things along. This helps them know where the beams are going to target. As for the scheduled brain MRI, it turns out their machine was too small. I couldn’t get my shoulders through enough. This has been rescheduled for Saturday on another machine. 


There will be other MRI's down the line too as we want to check every nook and cranny.  Looks like they do want cash upfront for this Saturday's MRI and my part is over $700. And this is just for the brain MRI. I'm hoping I can work out a payment program with them. 


I have been looking for a financial assistance program that will pay for my copays. The ones I found disqualify me because I use a commercial insurance provider. I do qualify for Medicare, but at this point in time,  I am scared to switch over. I am currently getting the help I need. If changing over stalls or complicates the process--well let’s just say this is one complication I do not want to have to deal with. There’s also the possibility that one of my current care providers would be considered “out of network”. So for this reason, I’m staying put right now. 


I am continuing to look for assistance with groups that will provide it. Another reason not to switch is that I am close to my $7,200 "Annual Out of Pocket Maximum". As long as I can work out some sort of payment plan with all parties involved, I should be able to continue to get my medical expenses paid for. 


For now, my doctors plan and treating and running test for the next few months. They are hopeful of the outcome. 


Though I still need everyone's help. With a few more months of treatment, followed up with recovery, my financial burden will more than likely exceed the goal of the GoFundMe campaign. If you can think of someone, or many someones, or a local news station, to share this with, I would greatly appreciate it. 


Thank you so much for being here for me. 


~John

----Update 7/18/19----

Wow! Really. Just Wow! It's only been two weeks since I posted the update on my campaign and we're over a quarter of the way there. Thank you for letting me focus on my treatment and recovery without the immediate stress of this looming financial burden.

Thank you. Gracias. Domo Arigato. Shay Shay!

Forgive me for missing last week's weekly update. In these last two weeks I've completed seven radiation and two chemotherapy treatments. As for the possibility of becoming infertile, I was able to store seeds away for a future harvest.

I'll continue to get both types of treatments this week. After this week, I'll take a break from chemotherapy for three weeks, and then resume it. Radiation treatment will continue until I reach ten sessions total. That is be this coming Tuesday.

I am hopeful that by the end of the radiation treatment that I will regain some mobility--at least enough to start to build up my physical strength via some physical therapy. I hope to be stronger for the next chemo session.

Pain management is still poor. But I'm still here, and fighting. Thank you for fighting along with me.

~John

---- Update 7/9/19----
Hi and thanks for checking up on me. Well, I’ve had to go back and forth with insurance, and doctor offices, and hotels, and all this red tape, but my treatment has finally been scheduled. I will be getting radiation starting tomorrow and chemotherapy treatment next week. I was told that the chemotherapy has a very likely chance of making me infertile. . . . This… is . . . tough. I really didn’t expect this. And I also didn’t expect the news to cause me so much sadness. Like really, really, really sad.

I’ve always wanted a family. That includes a little one of our own (once I find her).

It’s strange, really. I didn't get affected by the whole process of being sick and being close to dying. I just push forward and fought the best I could. Not until I got to this point and realized that this could be a reality for me. All the pain I have been feeling-- and that pain is horrible that I wouldn't wish it on any of my enemies. That pain doesn't compare to this thought of not having children. I don't want to give up on this goal in my life. It is hard to express, but this is a bit devastating.

There are options at banking my future away, but that requires an even greater financial burden.

This on top of my already piling up bills and new up and coming bills that I need to keep things floating. To do that I need at least an income of $3-4k a month depending on my medication and visit co-pays.


Even with the better insurance plan, I have this year I am looking at $55 per visit for an upwards of 8 visits a week depending on what we are doing. We aren't even talking about medications that aren't covered and other things that have been helping me occasionally rest like CBD oils (The good kind are expensive).

I didn’t want to write a post full of accounting numbers. But I feel I had to justify why my GoFundMe goal was changed from $5,000 to $10,000. Making this goal will allow me to get the medications that can help without hesitation, focus on my recovery instead of how I can drag myself to work for a few hours at a time, store my future, and protect my future by making the minimum payments on my obligations until the next phase.

That would be until I can at least finish treatment or a majority of the expensive part of my treatment and then hope I can go bankrupt while keeping my house and car. Doing this would probably cut my financial burden by 80%. It's in the plans.

I'm still struggling to get my disability payments as they never delivered the card I need to withdraw that money.

I am doing what I can in reducing bills or delaying payments. I am meeting with a lawyer about bankruptcy. I have gotten the next two months delayed for my car payments so I don't have to make payments until September. I got my GoFundMe up that I hope you can chip in or at least share as much as you can.

Thank you all for your support, prayers, thoughts, words, feelings, and kindness.

~John

---- Original ----
John went through a long bout fighting against medically induced lupus. With the help and support of you, his friends and family, he came out the victor in that battle.

What happens after a fight? You recover. John started putting in the effort to his body back to normal activity. He was able to get quite literally get back on his feet and enjoyed walks with his beloved doggie Po. John also started working full time again, commuting into Los Angeles. Aside from some irritating back pain, things were looking good. His new employer was pleased with how quickly John was making improvements to the way things were getting done. And of course, his new teammates enjoyed his company.

Well, the back pain got worse. And worse. And worse. After several ER and another hospitalization, doctors discovered cancer growth in his spine. So this is his new opponent. And like the last opponent, it’s started taking him down before John realized he was in a fight.

What’s worse is that after multiple scans (MRI, CT, PET, and whatever other letters you have left over in Words With Friends) and lab tests, doctors still don’t know the root cause of his cancer.

What we do know is that our friend John is in pain. The pain in his back hurts when he moves or remains still when he’s up or lying down. Some meds help with the pain, but then he has to deal with the side effects.

Needless to say, he couldn’t continue his job. And unfortunately, he wasn’t working long enough to get out of the deep financial hole his last medical bout threw him in. He worries most about being able to make the next payment for medication, hospital visits, car, mortgage, and his basic necessities.

He really didn’t want to be asking for help on another matter, but I convinced him to just give people an opportunity to help. So we are asking all of our friends, family, acquaintances, neighbors, and anyone else with a willing heart to help them get through his next month bills. If we can provide this gift/blessing for him, and let him focus on getting better.

Sincerely,
John's good friend and brother,
--Joe