Where do I begin?

The million dollar question.  So much has passed since I’ve posted, but I really haven’t had the will or energy to post.  I had honestly been in such a deep dark place, between 11 days in the hospital and honestly just allowing the devil to shake my faith.  Here is a little gallery of the fun and excitement over that time frame:

Make sure you click on one of the photo’s so you can get the whole scope!  I wasn’t sure how to insert text but I’ll break it down for you-

Arm: Since my port scabbed up and was potentially infected, they’ve only been able to use my left arm.  Why, you may be wondering…  Well that goes back to the great blood clot fiasco in my right arm.

Mouth Sores: So the green you see on my lips are the infection, the red you see is my mouth raw.  If I could have opened any wider than that you would have saw my entire mouth inflamed- Also knowing that goes all the way down to my stomach…

The rest are pretty self explanatory- but if you have any questions you know I’m more than happy to answer!  

If I’ve said it once, I’ve said it twice- cancer is hard.  Your options are so limited and life can  be limiting.  I’ve received so much encouragement, that sometimes has fallen on a deaf ear, but other times sticks with me in a very special way.  One of the most encouraging things was listening to Seahawks safety, Earl Thomas’, mother and her cancer survivor story- which you can find here: http://www.nydailynews.com/sports/college/texas-longhorns-cornerback-earl-thomas-iii-a-testament-mother-faith-article-1.460179. I was so impressed by her faith and belief in God that was impossible to not be inspired.  God truly facilitated this meeting- and I’m still stoked!

We all struggle as humans with our own humanity.  The thing that makes us flesh and blood, and ultimately the mud God shaped us in.  I hate being miserable, I hate being sick, but there was no clause after diagnosis that these things wouldn’t happen.  In fact, even reading the word can be disheartening sometimes because it says moments like that will happen, lol.  Good days, bad days…  Shaken faith, full of faith…  I’m so in love with the idea of God’s return it literally makes me giddy.  I know many of us share different faiths, but I can’t be afraid to tell you about one of the very few things that keeps me going.  Any given day my body feels free, but many more days feels like a prison.  The person inside of me wants to break free of the body I have.  However, I have to remind myself- that’s not my current call.  I want to project great things about the future, but it’s easy to sink in the miserable now.  This however made me realize, the backdoor the devil tries to capitalize on is that “miserable now.”  How do we circumvent that attack?  By allowing faith to be an action word, to be active participants in what and Who we put our faith into.  If I put faith into action “the word” says I can move mountains- with that being the case, why can’t my cancer be cured? Why cant I project great things about the future? We’ll see what God has to say about it, He’s the only one who can make the decision.  In the mean time, my playbook leads me to one play-  HAVE FAITH!!!

W/Love-

JW

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Golf Classic

http://www.thejarretwadeclassic.com/

I feel absolutely terrible that this is going out the morning that the event is supposed to be.  While you obviously may not be able to attend on such short notice- guess what?  It’s annual, so save your pennies for next year.  The fight must march on.  You may not be able to go and golf this yea, but you can:

  • donate to the charity via paypal
  • continue to give blood
  •  sign up for the blood donor registry
  • volunteer at a local cancer foundation/hospital/or cancer center
  • run a 5k
  • buy some wristbands
  • donate to any cancer charity (although I’m seriously promoting leukemia/lymphona and rare cancers)
  • caregivers, blog your experience- you would be surprised how valuable your insight is
  • watch the phrases that you say- not to offend anyone, but a few kind of get some people. (hang in there, keep your head up, chin up, excessive usage of keep fighting/be strong/don’t give up.  It’s not that these things are wrong, it’s just sometimes it feels empty.  Cancer is like a prison, and sometimes “I don’t know what to say goes miles.” Also, I know cancer is an illness, but we’re not always “sick.”  Constant “how are you feeling” can really make a man feel like a kid.  Plus, until I can’t lift a finger, I’m  gonna try my best to do it.  However, I always appreciate your offers to help. Your prayers and support, shoulder rubs, hugs virtual or physical mean so much.  I don’t say this to make you feel bad, I just want everyone to look out for one another- and words are the first line of attack or defense.
Countless things that you can do-  the Lord has given you so many gifts.  You know what, cancer might not be your calling.  There may be another health issue (mental or physical) in your circle of family or friends.  Let someone you know you love them not just by telling them, but by being involved!!! 
God Bless yall!  God bless the tourney and the participants!  Hope someone wins that million!!!
JW

 

 

 

 

 

 

 

 

 

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Dying more than living, and holding on to hope.

  I don’t really like posting if I don’t feel like I’m going to be contributing much of anything to the greater narrative that is my service to God.  Needless to say, I would rather apologize for gaps in time, than for reckless thoughts.

Now that I have some clarity and understanding of what’s going on, I can give you all some sturdy updates that will give you an idea of what I’ve got on my plate- hopefully a thing I can share that’ll help you understand people in this walk, or maybe just a good word.   Lets start here, one of three bone marrow extractions with the end goal of finding a donor.  That little red line you see, is about 2.6 cm of my pelvic bone that was drilled out by the fine folks at my new permanent cancer treatment home- the Seattle Cancer Care Alliance.  They take these crazy devices (after doping me up some of course) and pump out bone marrow from my pelvis, then get a sample of the bone to be melted down so they can ascertain exactly they level of abnormal cells, but also for the typing to find a possible donor match.  Now a lot of people have been asking me about how they could be a match.  A lot of it has to do with common heritage (for example, I’m biracial-blood lines, etc etc).  Many people have stepped up to the plate and offered, and I am so thankful that God has placed so many people in my life willing to try and save my life.  Unfortunately, the best thing I can suggest to you, is to go to http://www.marrow.org, find the closest donor center and they will try and match you with whoever you closest fit.  You can still potentially save someone’s life, I strongly plead with you that you take the time to donate blood and join the marrow registry.  My own mom jumped on, and has already been called up to do a procedure for a man.  She’s gonna do it!!!  Praise God!  I hope you all will consider the same.

 Next big thing, I’ve been getting platelets like 2-3x a week.  No, those bags under my eyes are not from a lack of rest, but an allergic reaction I had to my donor’s platelets that ended up breaking my entire face out.  It was itchy, and then benadryl knocked it out, lol.  Those platelets saved my butt though, the higher they are, the less likely I’ll sit back and bleed.  Few hives never hurt nobody!

 For the record, I’ve reconnected to rocking out.  I was a little bummed out this day, because this band I had bought tickets to see in like June, I had to bail out on because my white counts were kind of low.  Now I like good music, but jammin in my room with my wig mullet (courtesy of Telly and Alicia) to their music will suffice if it means seeing another day.

Now for the more intense stuff.  My primary oncologist had decided that he reached the end of the road with my treatment, because we’ve exhausted all the drugs within the normal realm of treating my illness.  Mind you, I’m under the leukemia/lymphoma umbrella, but technically it is neither.  It’s its own beast, with no name, and does its own thing.  I’m seriously trying my hardest to get it named after me.  However, with that being said, my secondary oncologist wanted to try a lower dose/less sickness inducing/out of the box treatment that at this point is experimental.  I’ll be the first to try this combo, and I’m all about it.  We’re gonna take the next six weeks to do this partial drug iv infusion, part pill form thingy to see if it will attack specific triggers that are allowing the abnormal cells to continue to grow.  Rather than hammer and nail me, which has been the primary chemo method over the last year.  Now not saying that method was bad, it just wasn’t doing what we needed it to do, and with options limited now, it allows for some alternative methods that I’m extremely willing to try.  Whether this means a cure I don’t know- but even if it means prolonging my life with a higher quality of life, I’ll certainly take it.  Whatever time God allows me, I’m going to use it to glorify His kingdom.

This leads me to my final point.  I don’t know if this is the end of my story, but if it is, I’m okay with the legacy God has allowed me in this time frame.  People have said things like “don’t give up,” “keep fighting,” “keep your head up,” etc etc.  I appreciate words of encouragement, but I also want people to remember that nearly 2 years into this, a great battle has been fought.  Suffering happens nearly daily- and it’s okay to be tired.  In fact, if death comes, there is no dishonor it.  I believe Jesus came to save us from the fear of death, so I will not allow the devil the honor of stealing the joy from me if that’s the service God requires of me.  I’m also not conceding to death, just accepting it as a part of the cycle of life!  As I solicit your prayers, I pray not only for miracles, but I pray that you’ll pray “God’s will be done.”  Because that’s the only will I wish to serve my folks.  I’m honored to be a vessel, not sometimes, but daily.  I love all of you independently, and corporately.  You have all touched me in ways that I can barely express in words, but better in tears, thoughts, and action.  What the doc may see as bleak and desperate news, I see as a challenge to serve.  Help me spread the word, help me love, help me be a vessel!  Let’s all reorganize our priorities to serve the King and to make each day full of purpose.  Lets strive to be better people today, better than we were yesterday so that we can set the bar that much higher if we’re allowed the next day.

I start my new chemo regimen Wednesday- please keep me in your thoughts and prayers.  I hope to connect with all of you soon.  Love you all.

JW

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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So much to talk about!

Well, apparently, now is the time and opportunity to share the anxieties. emotions, fears, prayers– well… wait. The regular day stuff we all experience, just with terminal cancer in the mix.  I realize more everyday that feelings are feelings across the board.  What changes them are these very uncommon denominators that begin to make you look back at life and go… Well shoot, maybe that wasn’t as much of a priority back then as I had allowed it to be.  That I’ve experienced a lot,  and it’s allowed me to flesh out the joys and great things in people the care about.  Finding the deep love in those who are willing to share it, and being honest and secure with the ones aren’t so willing to share it with me, it allows me to live in peace (key word- peace, not happiness) and allows them to live in whatever they call that.  Reorganizing my priorities for however short, or however long my future God is allowing me, this  has been one truest, trying expressions of love, peace, and happiness- it’s trickle down effect into my life has been so overwhelming and I’m so humbled by it all. Despite the pains, the struggle, the suffering, the uncertainty, and yes the less than 6 month prognosis that is so humbling, and tiring.  Yet I’m so grateful at how close God and I have grown and how well rounded I’m becoming.  Frankly, I’m routinely able to keep a smile on my face, just because of the implications of all these things.

Now- here are some updates.  I asked you all recently to pray about a mysterious phone call from these fine folks http://www.seattlecca.org/ regarding a bone marrow procedure.  I even got pictures for you kiddos’ this time around, and unfortunately I lost my phone, so pics are gone.  You missed out on the little scalpel, the bone marrow extraction devices, and 2.6 cm of my bone.  Oh weeeeeeelllll.  If I ever get a hold of it, I will still share it, and you all HAVE TO LOOK, MUAHAHAHHAHA!  Thank you.  So to answer your questions, and more me to thank you for your prayers from the bottom of my heart- thank you all.  Also a big shout out to Elynne for opening up her home to me making the commute to the Hutch thaaaaat much easier- not to mention the dog company, and 60 inch tv with doo hickies to enjoy God knows how many countless hours of tv that day.  Anyhow, the Hutch visit was just a post comparative procedure measuring my bone marrow before chemo till after this first one.  They’ve also also had to do HLA typing  http://www.marrow.org/Physicians/Transplant_Advances/HLA_Typing_Advances.aspx   so that we can essentially continue the search for a match.  So now the big phone calling I’m soliciting phone calls is for, will result in “HEY JARRET, WE’VE FOUND A MATCH, NOW GIY YER HIGH YELLA DOWN HUR SO WE CAN GET THIS THANG STARTED.”  Or mabye with a slightly less colorful illustration.  Either would be fine in my eyes though.

As of right now tumors responded to the last chemo, which is great, the disconcerting news are that the abnormal cells (lymphocytes) are jumping up fairly aggressively which aren’t allowing my natural cells to mature aggressively.  That’s another factor we don’t want, it’s caused me a ton of pain over the last week or so, moved me from the dilaudid to to the liquid iv form which is 8x stronger than morphine- which leaves me with having  me going to have to find a replacement for once I actually get out of the hospital.  Still dealing with the obnoxious night sweating, and a potentially new issue of insulin shots (b/c of all the meds I’m on)… ai yi yi.  I’d be calling myself a liar if I didn’t tell you I wasn’t tired folks.  I am outright weary and yearning for God’s decision.  One I will be thankful for beyond meausre.  On the medical end, I’m still very much in the middle of the fight, and it is locked pretty clear in the middle.  God is the miracle, and the decision maker.  So your prayers are greatly solicited and appreciated.

So this round they tweaked the chemo regimen a little bit, because the last one took care of some of the problems- but not all the ones we need to keep this window open for the bone marrow transplant.  I’m on day two in here, one more day of full dose therapy, and God willing back on these skreets (and in my bed) come Friday.  Not much has had an effect on me body wise other than the standard sort of weakness you feel once you’ve been wiped out.   I’ve had that Nicki action by my side all week, and talk about a ray of sunshine, did not really how much I missed that little lady until she popped in my room this morning!!!  Nurse Tia here the bulk of my stay, Nurse Nicole never enough, finally got to see Heidi again, and the rest of the ever so excellent 12th floor nurses just around the halls working hard and being awesome.  I also never quite get to express my gratitude deeply enough for Paulettle, Jessie, Telly, Alicia, and Dr. Goodman!  Those folks start the week off right for me all the time, I really feel surrounded by people who care about me beyond me being a patient.  It’s such a blessing.  I hope I can ever make then feel as warm and cared for as they all do me.

On another good note, I had been praying for some financial blessings.  Lets just say God doesn’t let down his kids in their times of need.  Expect me to buy something slightly random before I get my senses together.  I was able to go and use this testimony God’s given me with two new church families out in Tri Cities, WA- The Reach, and Pascho Ephesus churches to a wonderfully warm group of people who were receptive. I am very much humbled by the spirit that was in those rooms and the opportunity to have gained new family.  Also, just to be with The Taylor Gang and their home. *JUICE JUICE JUICE* (something Terrance and I will now have to take to the grave, lol)

Started to look at this epic, and realized how much I missed writing you all.  I’ll try to be more consistent.  But please know when I lack in here, I am diligently working on a good book to share to glorify the experience God has been giving me.  Thank you all for being so patient, and continuing to read and share all of this with me.  I still encourage you to donate blood at your local blood bank.  I strongly urge you to you sign up for the bone marrow registry at marrow.org/Home.aspx and search for you local registry.  You will likely save someones life.  Hero looks good on you, my friends and family.

I love you all

JW Dilla

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Dealing with every day

Whether you’re confronted by old, poor decisions.  Whether you notice a face that reminds you of a time where you weren’t so solid of a person- growth and God inevitably force you to take that head on and deal with the all the things, that make you, you.  During this whirlwind of a time, I’ve not only had to confront my future, but my past.  For as many people I’ve feel like I’ve connected with, I feel like I’ve left that bitter taste in other’s mouths.  It’s important to me to know that whenever the day comes that I should pass- that people believed I tried with all my heart and soul to be a good man.

The cancer experience has been one that has allowed this crazy pause, and peace that I’ve never experienced before.  A moment to sit down and really reflect on everything with some clarity.  What an awesome opportunity, I have no clue where it would have came from had this cancer thing never happened.  I’m sorry to all those I’ve ever hurt or offended, and I promise to make it up to you by making each day count in my commitment to being God’s servant.

Now- I should really probably give you guys some cancer related updates.  I just wrapped up a round of chemo, and I feel good.  I’m hoping and praying that the tumors subside long enough and the treatment provides a window for this bone marrow transplant.  Right now, the Hutch is doing a search on donor’s (umbilical chord blood, or close heritage).  I really hate chemo, but I’m thankful for what it allows.  My sleep schedule is so thrown off and I just feel like, bleh.

On another note  I need to hit yall with some picture updates too.  My hair has grown back sooooo weird- it used to be full of thick naps, and now it’s darn near bone straight.  The beard has been groomed next to wolves and grizzlies, and I’m stoked about that.  I also have found somewhat of an appetite back, please feel free to grab me on your next burger run.  I have had the hugest craving for a cheeseburger with a fat pineapple ring and some bleu cheese in it.  Don’t judge me.

 

W/Love-

JW

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Who knows what’s next?

I’ve had a lot to come to terms with in the last couple of weeks.  Some, few of of you can understand fully.  Others of you may question why- however, when God presents your fork in the road you’ll completely understand.  Right now, I’ve been blessed with family, friends, memories, laughs, and outright kindness that feels undeserved.  Darling Nicki and Theresa ran (or briskly walked) a 5k to fight cancer and it brought a smile to my face from ear to ear.   I’ve sat in this hospital bed since Wednesday morning and I’ve seen faces that have brought tears to my ears and has made my hear swell with joy.  My older brother, my KC pop, my nurse Ash, and just… wow.  Not to mention the promises of dear and close friends to come and see me.

However, in the back of my mind, throughout the messages to stay strong and fight, I have to say my mind and heart are in a different place.  Day by day, I feel like God is telling me to accept whatever His will may be.  Tuesday, September 6 th, 2011 my oncologist told me he didn’t expect me to live from this disease.  He told me at best 6 months, and I saw through my own papers that I was back in stage 4 cancer.  I did like any of you would do, I cried.  My doc held me, the receptionists (my friends) were all taken aback by the news.  I’m thankful that people are there to share shock with you.  Takes some of the burden off…  I’ve had to sit here and review so much of my life, some I’m pleased, some I’m ashamed, but it’s all mine- and I’m confident when I meet my Maker, He’ll either be incredibly proud, hurt, or both.

What do you do?  Well I stand affirmed in the notion that God’s will, will be done, no matter what.  Of course I’m fighting, living is a fight.  Of course I’m strong, have you heard of my Maker?  However, the choice is not mine to make, I want the world to know I have peace in trusting the Almighty.  I hope you all can find the same.

W/Love and encouragement-  we’ll get through it all wherever it leads!

JW

P.S.  Started a book, very excited about this.

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What would you do, if you were in my shoes?

Probably one of the illest questions anyone I’ve considered a friend or family of all time…  I don’t know if I ever fully processed the implications behind a question like that.  It’s frankly something we don’t do enough, even under “normal” circumstances.  Human beings are naturally sort of selfish/territorial creatures.  Putting ourselves in other folks shoes is something that we just don’t necessarily do often, if at all.  Typically, at least for me, I haven’t been able to do it until I was actually in a similar situation.  If the same person were to ask me that question now, I’d be able to answer it a little better.

Since the big scan, I’ve had to deal with an overwhelming feeling of loss.  Loss of time, loss of patience, loss of optimism, loss of faith, loss of energy, loss of courage etc.  Before you look at that list- remember, try to put yourself in my shoes.  If your life is on the line, it’s difficult to put yourself in a place where you keep those things tightly.  Ever since I was diagnosed, I hoped and prayed that the end of treatment would subsequently mean the end of my cancer walk.  Many things have changed, and you hope the hard times end and you can reclaim a sense of how things were before everything unraveled.  When you get news like that, even if my mind is convinced that the cancer could stick around- my heart wanted it to be gone.  Now, I have to revamp and dig into a deeper place to increase the things that will get me through.  Part of it, is remembering that in someone else’s shoes, the situations are occasionally much worse/painful than mine.

Now with that being said, some folks need a friendly word of advice…  If you don’t know what to say to someone during a rough situation- don’t say anything at all…  I repeat- don’t say ANYTHING, at all.  It won’t be considered a diss, if all you have to say is “I’m here if you need me.”  Otherwise you run the risk of saying something utterly ridiculous.  It’s super important to guard what you say around people who are struggling.  The thing is, you come off as insensitive, or like you really don’t care if you give a stock encouragement phrase.  I had an associate, say something to the effect of “hang in there, bud.”  My mouth sort of dropped…  Then I thought about it- 1) Just an associate 2)Not from bad intentions 3)could have been “screw you buddy” instead.  Not saying anyone gets a free ride based on good intentions…  But it certainly softens the blow.  Realistically, the type of support I’ve gotten is lasting way longer than one can actually expect.  I’m grateful for all the love b/c it’s no one’s responsibility.  I just hope through this next stage, people will try and wear my kicks- as I try my hardest to rock theirs.

Tomorrow I meet with the bone marrow folks- keep all this in prayer.  Also, I may be upgrading to asking not only for prayer, but for donations.  Don’t worry, it’ll be very organized and done in a tax write off sort of way.  However, on my way out the door at the ol job, and cancer is far from cheap.  I’ll keep yall posted.

As always- MUCH LOVE!

JW

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