Friday, September 5, 2014

It's been a while...

I haven't posted since 2012 and I've been thinking about posting for a long time. Not sure why, maybe I was just lazy..anyways I just finished an inspiring documentary called "Crazy Sexy Cancer" by Kris Carr. She also has a rare cancer called "epithelioid hemangioendothelioma"(and I thought mine was hard to read) with tumors in her liver and lungs. She not only tracks her own life but the life of 3 other cancer survivors. My friend Llana lent me this DVD 2 years ago but I finally watched it tonight..yea it takes me a while to get to stuff sometimes. This reminded me that I should post updates once in a while, especially if it could help a future cancer patient/survivor...and yea for those who have seen it "FUCK CANCER"!

First up, the Crizotinib \ Xalkori seems to be working or I hope it's working. We have no evidence other than how I am feeling, which is the important part right? I have a scan coming up (unless insurance fucking denies it again) within the month then I will know for sure. My doc gave me 3 months to live at the beginning of July mainly because the scans looked so bad, lots of tumors along my upper chest wall and that's all we can see since I only had a chest CT and not a full body. I was in severe pain (couldn't bend forward or twist my neck without extreme pain) and I partially blame Cigna for this since Connie and I were trying to get a long overdue full body PET/CT scan and the Crizotinib for months which they denied even tho I have had the PET/CT many times. Maybe I wouldn't of been in so much damn pain if I started the drug earlier and we had an earlier scan to show how bad it was getting. I was also recommended to get off the Pazopanib by this point since my docs said it's most likely not working anymore. These TKI or "nib" class drugs are typically tested for 6 months through clinical trials and they stop working after about a year for many patients. This is uncharted territory for medical science and earlier in the year my doc even told me "anything goes" at this point in my Pazopanib treatment. I was like "greeaaaaat"...At least he's honest with me.

When I arrived at UCLA in early July writhing in pain, my doc prescribed me some of the most powerful pain meds like Dilaudid (another opioid)  and Fentanyl patches (100mcg in strength). The patches aren't prescribed to anyone unless they have leveled up to the final opioid (yes I've tried just about all of em by this point). Not only that, it is 80-100x stronger than Morphine! Dat some powerful ass shit man. It's a patch that slowly released opioids into my system over the course of 72 hours but if I try to ingest it all at once it will just kill me (even extremely hot baths can kill me since they are heat activated). So I have read on the forums that I need to "respect the patch"...so now I takes baths in between patches. The patch and Dilaudid were working and I felt less pain but I was experiencing memory loss and I just didn't feel good at all. The 50mcg Fentanyl patch wasn't enough so I had to go up in dose from to 100mcg just so life was somewhat bearable. Connie organized visits by my friends including many Blizzard folk and my boss Chris. They can attest to how bad I looked and sounded. I didn't even remember some of the visits since I was so hopped up on drugs and I was literally dying on a rented hospital bed at home. There wasn't much the hospital could do for me even if I was admitted.

Here's where timing gods were really on my side. Around the time Connie ordered me a hospital bed and Kimba lent me her wheelchair I get an email from my HR manager Julie that using the powers of Activision Blizzard Benefits (ABLIFE) they were able to overturn my denial for the Crizotinib. I was excited to hear that since by that point I had nowhere to go and the doctors were about to give me full chemo just as a last ditch effort. So before the end of the week I get a call from CVS Caremark(CVS's specialty drug delivery service) saying they had my delivery ready for the 14k a month drug roughly 250 bucks a fucking pill, seriously...they also have to tell me the cost since it's delivered to my door. This is the drug that my Foundation One tumor testing (from March 2014) showed as a potential winner to hopefully stop or slow my tumors down (for those interested I needed an ALK inhibitor). Luckily they do next day delivery so I was like " fuck ya!". Anyways I started taking it right away and felt noticeably better within 3-4 days. On a side note, foundation one took care of the appeal cost and the 7k that Cigna didn't want to pay for was covered..yay.
Week by week I was feeling better and there was some side effects in the beginning (like vomiting from driving or eating) but those went away as soon as I was on a consistent regiment of Zolfran (a safe anti-nausea med) and fruits! It was also only the first week where I had noticeable side effects (I do see light trailing in the dark but that ain't so bad). No more white hair since that was a Pazopanib thing and all the other side effects are coming from my insane 100mcg Fentanyl patch. I am trying to taper back down to 50mcg since it is highly physically addictive and adds to my breathing problems which I already have issues with...yes.. I haz lungs filled with innumerable amount of tumors along with childhood asthma which has come back.

In early July when things started to get bad my wife Connie (Constance Griffith) took leave from her designer job at Carbine Studios to be my caretaker. Since my arms are still weak and its hard to pick up heavy stuff she basically takes care of most everything around the house (including some upgrades which she couldn't do while crunching and wanted to do for years). I love her now more than ever and she has fully taken responsibility for my health (I mean read the last 2 blog posts). She has been super awesome and my best supporter during these brushes with death, I know it takes a large toll on her and I wish that I was recovering faster so I can physically go back to work and help out more around the house.  My dad Del has also been pitching in along with Connie's brother Rob and my..mother Yoshiko. I still get tired easily and it's embarrassing sometimes since I am so used to being able to do everything alone. I really have to pace myself otherwise I can't catch my breath and start to hypo-ventilate. I have been feeling less physical pain week by week so we will see. On a final note, I have been more emotional now that ever in my life which is a bit weird for me being half Japanese and all (ex. crying while talking to people, thinking to myself or sobbing during dramatic movies? I never used to do that). Anyways I will update the blog again once I get another scan and/or a UCLA update. KKG out.
PS. Connie will definitely, give me shit, for my, bad grammar and usage of comma's :)

7 comments:

  1. Glad to hear the Crizo is making you feel better. I look forward to the day we've mastered genetic engineering to the point where we can truly fuck cancer. There should be one enormous (worldwide) block party when that happens. Thinking of you brotha. Take care, Kevin.

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  2. Thanks for your awesome update, Kevin. Glad you saw Kris Carr's documentary. She is an amazing example of someone who took her life into her own hands. She's passed and survived her so called "expiry date" and continues to live a full and rich life. You and Connie have that same survival spirit. KEEP IT UP!!!

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  3. So glad to hear you are feeling better. Thinking about you two all the time!

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  4. Kevin, your arms may feel weak at times, but I admire your strength overall. You and Connie make a fantastic team, keep fighting the good fight. And I totally respect the man-tears. It really takes a tremendous strength to allow yourself a moment of weakness, that way when the time comes and you need to be hardened, the tears have already been shed and don't interfere with what you need to face clear-eyed.

    Take care man, keep fighting the good fight and we will be thinking of you, and drawing courage from your admirably fought battle! Please accept our support as well when you need it!

    PS-I sent you an email...

    PPS- sorry if this posts multiple times, Blogspot hates me

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    2. PPPS- Before Connie gets you for it, "comma's" should read "commas" (plural, not possessive...maybe you meant this to be ironic?). I think maybe Connie and I share the same sometimes neurotic sense of duty to correct others' misuse of comma-shaped punctuation?

      I also was wondering what your CT scan schedule was like? 2 months? Here's hoping that the next scan shows the Crizo working. Has your doc or you looked at this before?

      http://www.ncbi.nlm.nih.gov/pubmed/22868503

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  5. Let's sketch with everyone again soon.

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