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First and foremost, Happy Holidays!  I hope everyone had a wonderful Thanksgiving!  The holidays are coming up so please revel in family time!

I had the most memorable experience with my mom in Taiwan.  The trip was filled with “firsts” and memories that I will undoubtedly carry with me forever.  First time traveling internationally with my mom, first time seeing my mom interact with her sister, first time meeting my cousins’ kids, first time seeing my best friend’s son.  I’ve always been proud of being Asian but after being in Taiwan, I felt a different kind of pride…or maybe it’s not pride but it’s more of an appreciation.  It’s hard to describe.  Anyways, we visited my best friend Melanie and spent the rest of the time with my Aunt and her family who were incredibly hospitable and welcoming.  It was wonderful getting to know that side of the family I knew nothing about.  I didn’t have many aunts or uncles, let alone cousins that I grew up with but I wish I did.  It seems odd that I barely know my cousins when there are other families whose cousins grow up practically like brothers and sisters.  Anyways, it was time well spent and I hope to make this trip with my parents again at least one more time.  One thing is for sure, my Chinese is shameful and horrific and that needs to change.

I was there for a week and my mom was there for about a month.  She was Miss Social Butterfly and reuniting with classmates she hadn’t seen in 30 years…you can imagine how happy everyone was to be re-united after so many years.  Annoyingly, I developed a horrible cold the last day I was there.  One of the worse I’ve had in a while – high fever, chills, sore throat, cough, congestion, etc.  Of course, everyone came to the house to spend time with me before I left but I wasn’t up for it so spent the last night praying to get better before getting on a 15 hour plane ride home.  Thanks to Ambien, the flight home was cake and my dad picked me up at the airport.  Oddly enough, my mom got the exact same cold on her last night in Taipei too.  In any case, everyone is all healthy now and me and my mom’s diabetes doctors are going to strangle us for gorging on delicious Taiwanese food but hey, we were on vacation!

So back to work and all is good on that front.  Health-wise, I’ve never been better and speaking of which, today is exactly 4 months until my 5 year birthday!  Originally my plans were to go to Australia but after the Taiwan trip, I think my body is still not ready to be pushed like that so alternative plans need to be made.  Nevertheless, a celebration needs to be had, if not one, but many!  It is, without a doubt, THE milestone of my life.  Not just mine actually, but me and my family.  5 years ago, if you had asked any of us what the chances were of making it to this point, I can assure you no one (family, friends, doctors, nurses) would say 100%.  Again, an aspect that most reading this do not grasp and frankly, something I still can’t wrap my head around, but whatever the case, I’M ALMOST THERE!

So in light of that, hug your loved ones tighter this holiday season and to everyone out there in this cyber world, best wishes for a memorable, healthy and joyous 2014!

All is absolutely completely utterly normal.  NORMAL!

I saw the specialist on Friday morning and was there for 5 minutes.  I explained to him what my dentist saw and he said right away “I think I know what is going on and if so, you are totally fine”.  He took a look and said “Yep, it’s normal.”  My mom and I stared at him in disbelief…”are you sure?  are you absolutely sure?  Take a look again”.  Everyone has what I have – glands at the back of their tongue, just some are bigger than others.  The few minutes we were there, everyone knew about my story and were giving us hugs.  It was a good day.

Afterwards, my mom and I ate a celebratory breakfast then came home and took a well-deserved nap.  I hadn’t slept well for the past week – waking up in panic attacks…actually woke up crying once.  Too much.

I can continue to plan my trip to Taiwan now.  Life is no longer interrupted.  Back to life, back to reality and it never felt better.

Let’s see if I can ride out these next 6 months without any more crises and celebrate my 5-year in proper style.   Hello Australia!

I’ve had one of the worst weeks ever.  Friday – I got slammed in between closing doors on a subway, leading to bruises on my leg and arm.  Saturday – while on a walk with my parents, I slipped on dog poo (ha…ha) and totally scraped up my right knee and sprained my left ankle.  Amidst all of this, I’ve been working on personal issues but all of these things are the least of my worries now because I am going to get a biopsy of my tongue/throat this Friday.

F***

Saturday I had a dentist appointment and my dentist noticed that I have 2 inflamed taste buds, 1 on each side of my tongue.  Given my medical history, she recommended I see an oral surgeon and have them biopsied.  I immediately started crying and unintentionally lashed out at my dentist when she told me to “stay calm”.  I wanted to run to Sloan.  It’s odd that that place is my safe haven.  First thing this morning I made an appointment to see the surgeon for this Friday at 8:30am.  I thought I’d be able to come back to work afterwards but apparently my mouth will be swollen and I’ll be in some pain.  Stitches, pain meds, liquid diet, waiting.  Magnificent.

I’m prepared for every scan that’s out there…I’ve had them all.  I’ve had countless biopsies of my bone marrow, breast, feet and leg tissue but never ever thought I’d be going through something like this.  You know, just once, I’d like my appointments to be normal.  No matter how much I try to fool myself, that will never be the case – my life is not normal.  Hi, you might have Lyme disease.  Hi, we need to biopsy your breast tissue because  you have a tumor in your breast.  Hi, we need to perform a spinal tap in case your cancer spread into your nervous system.  Hi, you had an allergic reaction to platelets and had severe uncontrollable seizures.  Just once.

I was a zombie at work – teetering between sobbing at my desk or screaming at someone.  Today my emotions manifested as tears, who knows what will happen tomorrow.

I haven’t felt this type of anxiety in years.  Years.  It’s a combination of the unknown and a flood of horrible memories that I thought I had tucked away – going to a biopsy alone, going to get a spinal tap alone, getting biopsy results in Hawaii and flying home to get more biopsies, recovering at home while the world is completely unaware of my struggle.  Why me?  I think I’ve been tested enough – I’ve struggled enough.  How much can 1 person really take?  I am done fighting, rebuilding, recovering.   I have enough experiences to last me a lifetime, most of which will forever plague me.

I know I’m not alone but at the same time, I am and that’s what sucks the most.

I realized I haven’t posted since before my 4th birthday which is odd, because I normally post on my birthday.  So a much belated post to the internet universe.

My 4th birthday started with a Muse concert at MSG, a day off from work which was spent with my parents followed by a delicious tapas dinner with them.  My friends took me out to get some good ol’ bbq/comfort food which was perfect not to mention the flowers I got from friends and family on my birthday too.  It’s a very odd feeling to be so close to my last milestone on this journey.  I haven’t forgotten the horrors my family and I experienced but we can look back on it with a SMALL sense of humor (baby steps), as in…how utterly absurd and unbelievable the whole thing was.  I recently found a large box of old prescriptions bottles and took a picture of HALF of it.

This is half of the stock.

This is half of the stock.

It’s actually quite repulsive when you stop and think about it.  This is HALF of what I had laying around…the total was about 1 month worth of pills.  Clearly, over the course of my initial diagnosis and my transplant, the quantity of pills I’ve consumed and pushed through my kidneys and liver is obscene.  Not to mention the IV drugs I’ve had along the way.  No wonder Dr. Barker frowns upon me drinking….=X

In any case, that part of my life is now gone and my current pill intake is far less harmful.  Multi-vitamin, calcium, vitamin D, hormone-control (fancy way of saying birth control).  The only real med I take is met-formin which is to control my diabetes.  Speaking of which…I recently had my A1C tested and HELLO 5.7!  For those unfamiliar with what this means:

“The A1C test gives you a picture of your average blood glucose control for the past 2 to 3 months. The results give you a good idea of how well your diabetes treatment plan is working.  In some ways, the A1C test is like a baseball player’s season batting average, it tells you about a person’s overall success. Neither a single day’s blood test results nor a single game’s batting record gives the same big picture. ” (taken from the American Diabetes Assoc. website).  Bottom line is anything under 6.0 is normal.  I was teetering around 6.2 – 6.4 but my most recent test was 5.7!   It’s a huge step forward!  Still have to watch what I eat but it’s better than taking more pills!

I recently went to my dermatologist who prescribed some meds to help strengthen/thicken my hair.  He discussed it with Dr. Barker who also approved but it required extra blood work and monitoring of my potassium levels.  I had long-term issues with my potassium levels post-transplant and the thought of monitoring it again for purely vanity purposes didn’t seem worth it.  So I actually told my dermatologist that I chose NOT to take the meds.  I have NEVER refused to take a med prescribed for me but it felt damn good to be able to say “thanks, but no thanks.”

Besides that, life is going very well.  Strangely normal.  My mother’s 70th birthday celebration is coming up and the entire Lin family and their respective clans will be gathering in Penfield for the festivities of fun.  So I will be spending this summer doused with bug-spray and/or wearing long pants, praying for a bug-bite free summer!

My 4th birthday is right around the corner  and I could not be more excited to celebrate it.  Bertha invited me to the annual Leukemia/Lymphoma Black Tie event and this year I brought my beloved NP with me.  It was truly an experience to be there with one of my best friends and my NP who has evolved past being part of my medical team and into a dear friend.  As each day passes, I am closer to the awe-some 5 year mark which according to some, is when I can declare myself cured.  A phenomenon, actually.  It has a deep routed meaning, beyond the medical and physical hell I went through, but a true milestone.  Normal, I will never be but I will not be that far off.  I don’t expect many, if any, of you will be able to sincerely grasp what this means but turning 5 will be my life accomplishment and I’ll only be 33.

In other news, my diabetes has reared it’s ugly head again.  My A1C is 6.2 which went up from 5.7 3 months ago.  After that appointment 3 months ago, I might’ve become less strict with my diet….back to white rice instead of brown, chips instead of pretzels/popcorn, less exercising, etc.  So I’m back on the diabetic path of brown rice, wheat/quinoa pasta, and popcorn.  The exercising is a bit hard because work has been kicking my butt so it’s impossible to go during the week and all I want to do on the weekends is rest.  But I know that being on diabetes meds at such a young age isn’t a good thing…so gotta get myself back to the gym.

Let’s see….been trying to buy an apartment which is a lot harder than I imagined.  It’s becoming a seller’s market slowly so it’s harder to find good apartments at an affordable price.  Good thing I was promoted this year!  So yes, my hard work was rewarded with a promotion and a raise.  My company has been amazing to me from the day I started in 2006, acting like a human rather than a corporation.  For all those haters of the finance world, there are exceptions and I’m fortunate enough to have found one of them.

What else….my hair is incredibly long.  I’m not sure what to do with it now.  The original intent was to donate it but I don’t think I’ll look good with short hair.  The texture is completely different than Asian hair…and the color is different too.  Now it’s super thin so my good ol’ bob won’t the same on me.  I suppose this is the fun part!

Haven’t had any more bug bite fiascos but with the spring/summer right coming up, I’m loading up on the bug spray.  I can not go through that hell again.  HELL NO.

So that’s about it from me.  Birthday festivities include: Muse concert, Gotham Bar and Grill with the parents, dinner with friends,  and a few days off!

Catch me if you can.

I haven’t written in a while which is a good thing.  Not much has happened since my last post although I was hospitalized several more times for more bug bite reactions.  After seeing several specialists, no one has been able to give me any sort of specific diagnosis but Janet’s source seems to be the most helpful.  Basically, it is what it is (although I detest that phrase)  Winter is officially my favorite season.

I was able to visit my sisters for an extra week thanks to Hurricane Sandy which was a special treat.  Work is going very well and my overall health is stable.  My 4th birthday is not that far away which means planning for my 5th birthday bonanza is right around the corner too.  Fun things to look forward to, for sure.

Wow, there really isn’t much else to say.  But as the saying goes at Sloan: Boring is good!

Happy Holidays!

The post earlier about the bug bite reaction has sparked a new chapter in my road to recovery.  Personally, I thought I was in the ‘untouchable’ zone but apparently, my body is presenting an extremely severe reaction to bug bites.  Let me rewind.

Early July, I went to work and noticed a small red dot on my inner thigh that was itchy.  Innocently, I scratched it.  Fast forward 24 hours, the entire inside of my left leg is red, swollen and insanely itchy.  Not to mention that it had become painful to walk.  After a quick discussion with my parents, we decide against going to a local ER room and head straight to Sloan’s Urgent Care.  The doctor at UC is convinced that oral antibiotics will not be sufficient against this severe reaction and admits me to the hospital.  The typical protocol is that the UC doc gets in contact with the patient’s primary doc and they decide on the next course of action.  Dr.Barker was not sure if being admitted was necessary but the UC doc said “oh no, it most certainly is”.

Being told you are going to the same floor where you spent 90 days of misery and stress is not an easy thing to take.  As I was crying in Urgent Care, waiting to go up to my room, I felt that feeling of the unknown come over me again.  Who the hell could foresee a bug bite wreaking this havoc on me?  Is there a some underlying issue that will suddenly pop up and I’m out on disability for 2 years again?  Just as I am hitting a nice stride, putting together the pieces of my life, I’m back in the hospital for 5 days.  It turns out to be a bug bite  and an allergic reaction to the bite, coupled with a skin infection occurring from a break in the skin from scratching and I’m admitted to the hospital.

Much to my surprise, both Michelle and Dr.B came up to visit me during my stay.  I think they had to see it to believe it.  “Wow, Wincheng…THAT is impressive”.  Believe me, it was.

Now here come the barrage of questions: What bit you? Did you see what bit you?  Where were you? Is it bed bugs? How do you prevent this from happening again?

Here are the answers:

What bit you? Ok guys…when have you EVER seen a mosquito, flea, tick whatever ACTUALLY bite you?  It just doesn’t happen.  You feel something itch, you scratch.  That’s the progression of things.  Stop asking that question.  Please.

Did you see what bit you? Please see my answer above.

Where were you?  I live in Queens and commute via subway to Manhattan.  That’s about as exciting as my life gets.  I don’t own pets nor am around those that do.

Is it bed bugs?  Shut up.

How do you prevent?  Ok, probably the only relevant question.  Pants and tons of bug spray.  Whenever I notice a new bite, DON’T SCRATCH and swab it with alcohol pads.

I forgot a fun thing that that popped up along the way.  While I was in the hospital, the site started to form a bulls-eye appearance which prompted the doctor to test for Lyme disease.  The results came back positive BUT it turned out to be a inactive meaning I had been exposed to it as some time in the past and still had the antibodies in my system.  When I found this out, something came over me and I started crying.  For once, I’d like my blood work to come back a-ok, spot on, normal, no surprises.  It’s always something.  Enough with the surprises, life’s curve balls, if you will.  No, Nurse, go out and come back into my room with different news.  Even though Lyme disease is quite common and if caught early, it’s treatable, I was overcome with frustration.  Just…enough.  So the oral antibiotics I went home with also treated Lyme disease so it’s gone.

I had some bad luck with the IV’s this time around.  4 attempts for an IV, 3 successful IV’s, 5 blood draws every day = 11 different holes in my arms.  Still have some bruises from the failed attempts.  Ninnies.

During my 5 days at Sloan, I also experienced Red Man’s syndrome from Vancomycin which is itchiness in the throat, neck, chest area.  They slowed down the infusion rate and then I noticed my vein looks like this:

Vanco-what?

I tell my nurse and looks like this gal is allergic to Vancomycin, in all shapes and forms. This is why I go to Sloan because they will have records of this stuff.   My sisters thought this was gross but I think it’s kind of cool….no?

I saw the dermatology doctor at Sloan on Thurs, Aug 2 to get his insight on why I was having the sudden severe reactions to bites but unfortunately, without any active reactions, there wasn’t much for him to do.  He did biopsy 2 suspicious moles which I will get the results back in a week.  He also referred me to an allergist (Dr. Jonathan Zippin) at NYU Presb for me to do a patch test to help determine what I am allergic to.

Dr.Barker told me that whenever I thought a bite was beginning to resemble what I just had, I should go straight to Urgent Care and get started on antibiotics before it takes over my entire leg like this time.  Which brings me to today.  Or rather, 4 days ago.

I woke up Sat morning and was itchy behind my left knee and along my right calf.  I know better than to scratch and immediately swabbed all areas with alcohol pads.  Fast forward a few hours and the area behind my left knee is not looking good and head straight to UC.  I am there for almost 4 hours and finally see a doctor who sees my bites which have now spread exponentially on my legs.  She immediately determines that oral antibiotics are not sufficient and I need to be admitted to receive IV meds for several days.  I wait for another 3 hours and finally brought up to the 10th floor, the breast cancer floor.

I was a tad nervous being on the breast cancer floor, or really any floor besides a transplant floor because my meds are totally different but in the end, the nurses on every floor at Sloan are awesome so I was taken care of.

This time, I insisted on seeing derm while I was still inpatient at Sloan and while I still had some craziness happening on my legs. They took a biopsy of a patch of skin around one of the bug bites (which had formed a narsty blister.  About the size of a quarter.  I’ll be kind and won’t post pics but NAR-STY) and put in 2 stitches which will be removed in 2 weeks.  I asked them what their opinion was and this is what I was told:

It is probably an extremely severe reaction to bug bites although it could also be an auto-immune disorder.   The biopsy will determine which one I’m dealing with.  If it is a bug bite, it is hard to distinguish which creature is doing this to me.  The only thing they suggest is long pants, tons of bug spray especially at night.  And no, it is definitely not GVHD.

They tried to get the allergist from NYU to come to Sloan but legally he is not allowed to operate at another facility so I will be seeing him next week.  Hopefully there will be something left for him to examine on my legs (which is an odd thing to say) and between the doctor’s notes and my pictures, he can get an idea of what’s been going on.  I’ve never ever had these types of reactions before and it’s becoming beyond annoying.  Tons of antibiotics, not being at work, follow-up appts, and general paranoia of being outdoors.