fever

hey guys... i'm pretty sure you all guess by now.. if i'm not posting .. then i'm not doing well... i had a fever last night.. and spent most of the day in the hospital.. i'll catch up with ya guys either tomorrow.. or when i feel a bit better...

peace

consultation

hey guys.. i got chemo today so i'm going to keep it short... I was thinking once I find out the info on the transplant... I will post the information and we can all consult on what we all think... and i think that way we'll be better able to come up with a decision...i will elaborate more on why my wife and I think consultation is important in our lives... most of you who are Bahai's know why... but for those who are new to the concept... i'll let you know why we believe in this....

also... this blog is to encourage dialogue .. don't be shy ;)

peace

First call of the day

I received a call this morning from the hospital telling me they found a 9 of 10 match, and that I have an appointment to meet with the bone marrow transplant team on the 1st of Oct...

This is freakin' awesome news!!!! I've been on the list for 2 years now. I'm doing so well though with the chemo that we have some serious thinking to do because there are major risks with transplants.

please keep me in your prayers so we can make a proper decision once we find out all the information!!!

Thank God

peace

what my wife does often..

Mi Leaozinho from Saman Maydani on Vimeo.

feel at home

feel free to ask questions whenever you have em... i'll eventually answer them... i'll have those Q&A post now and then...

random pics

bakings

my wife made this bread a while back, just never put the pics up... it was soo delicious..

marriage and cc

ok.. so i've been dreading writing this new post cause i haven't posted one in a while.. and the longer i procrastinate the post there is more to say... when there is more to say the more energy must be expended and hence time away from tv :-s. Not that i hate writing these post... cause every time i start i could keep going, it's just the thought of it... anyways... lets catch up..

this post i'd like to talk about marriage and cc... on our way to rochester my wife and I got into a discussion... well lets face it, it was an argument. First of all let me preface this by saying i think my wife is the smartest person I know when it comes to relationships and emotions. No matter what she has ever said in regards to our relationship, the rules we've made, if we dont follow them....her prediction comes true. I don't listen to her as much as I should cause my ego gets in the way (that's a whole other conversation)... anyways..so the argument was about how i'm not pulling my weight in this marriage. let me say for those of you thinking this is absurd...having cancer becomes normal and we both agree that we cant change our standards because of it. So me " not pulling my weight" means that I'm not thinking about our relationship enough and that i'm not an "active member" in this relationship... let me clarify: my wife and I believe that there are 2 basic things that make a good marriage.. first, good, respectful and honest communication no matter what; 2, effort...and by effort I mean romance, sacrifice, understanding, love, and self growth...always working on bettering yourself. So the argument was her telling me to remember these rules and me just letting my ego totally take control.....a lot of the time i go into defense mode....so for the guys out there that are reading this....i just want to say don't make this mistake because it gets in the way of honest communication. I really look up to my brother in law because i see how his ego and pride rarely get in the way of communication with his wife. Anyway let me tell you what we learned from the argument... when it comes to our relationship...the bottom line is that I don't have the energy for our two rules... i barely have energy to stand for 2 mins..but my wife has the right to feel the way she does...and for all the cancer wives out there...i want you to know that husbands sometimes get so wrapped up in cc that they might need a reminder now and then to still pay attention to their realtionship...cuz that is still alive and can get so easily lost without care and attention. I guess that goes for any event in your life....be it your job, a death in the family, or your just being busy with school.

this is something i think all couple should be always thinking about (these are now my wise wife's ideas, as are mine now.. but she gets the credit)...if you put your relationship on the back burner, that's when things go bad... you start communicating less, become less attentive of each other... basically all the things couples do when they are in a relationship for a long time.. my wife likes to say just because you're married doesn't mean you stop trying, you always have to make an effort... it's like before your married.. you are constantly trying to be better for each other, you do things not to loose the others respect.. but when you are married, as the saying goes you "let go"

So basically when i feel good for a day....i should be talking with my wife and checking in with her to see how shes feeling and also to let her know how i'm feeling (not physically but emotionally). And I had to remind her that this cc life isn't permanent. we came up with this conclusion after some yelling and some silent treatment.. but we got there.. hahahahahah

so what else.. as i mentioned before we had an awesome weekend, we relaxed and chilled and now we are back.. oh i was supposed to get chemo last monday but my counts( these are my blood levels..my immune system...so when theyre too low...they cant give me chemo) anyway they weren't high enough, so it was pushed back to wednesday, 2 days ago... so now my back is sore from my L.P.

i'm not as nauseous from the chemo today but wednesday was a bitch... i'm in such a foul mood when i'm nauseous...my poor wife...she sometimes laughs when im in a bad mood and says "God better give me a solid gold baby after this!"

joonam, if i havent told you enough, i love you and you deal with alot... You are the strongest person i know.

anyways i'm going to go take a nap now.

peace

back in T .

so i'm back,.. and tired... this little time off was real nice, relaxing and yet I had some kind of energy to do some things...

tomorrow I have a L.P... lumbar puncture, and chemo.. so i'll be out of it.. or you know what.. i'm not going to be out of it.. i'm not going to feel anything.. i'll bee fine.. i'll let you guys know what's been going on these past few days... right now i'm tired and just want some wings ;)

i miss ya guys..

peace

traveling

so yeah.. i am finally out of my house, and doing something.. i am currently in rochester NY, finally visiting my sister-in-law and her husband... i have missed them...

everyone right now is doing their own thing, so i am just sitting at home watching travel network and recuperating from the 3 hour drive it took to get here...

so i am going to take a bit of a break, and see ya when i get back home.. or until i get some what bored and miss writing about myself :)

peace

tired

to answer some of the questions i've received..

"have you every considered vlogging?"... No, i haven't... i'm not exactly sure what it is, but i'm going to guess video blogging... and it is.. as i have just googled it... i don't like the way i look right now.. so i don't think i'll do that... i've never thought i was particularly good looking, but i was always comfortable with the way i looked, i was happy with it... but now with the steroids, and side effects... i really have a hard time with looking in the mirror... mainly because i look like a sick person. I have rarely felt the way i look. in regards to loosing hair; the first time i went bald, i had a hard time, but in time i grew to not mind the look.

"can you tell us about why you named the blog icanparkhere?"... some people can already guess why.. but for those of you who don't, keep following, and i'll let you know on the 1 year anniversary of this blog ;)

"Would you consider becoming a chef after you are done with treatment?"... I have given it some thought actually.. i just don't think i have that much of a passion for it.. i think i just enjoy eating more.. I think it'll become more of a hobby in the future..:)

"Do you think you would be interested to become a doctor to find the cure for your cc?"... well, one thing i have considered is becoming a nutritional consultant (because i want to get a degree in nutritional sciences), for cc patients.... I believe there needs to be more research done in the role food plays with disease and health. I think there can be better ways is the we cure or manage our diseases... i guess i would only consider research if it involved nutrition.

"what would you tell someone who's just been diagnosed with cc?" .... well i cant speak for all types of cc....but i would probably tell them that its not so scary when you get used to the idea.....and dont freak out when they give you the tour of the hospital floor that you'll probably be staying on for a while....stay positive as much as you can...and dont ever let cc take over your mind....i try do this as much as i can..

"what are some of the biggest benefits you think you've gained from this whole experience?"

Im still not sure how to answer this one....i think it might take me time after this is done to understand what ive been through...ill get back to this one..

"In what ways would you say that your Faith helps you in this experience?"... it has kept me from asking the question "why me", it has given me the tools to better deal with this in a positive outlook rather than negative... i feel like i have become distant from my faith though.. not because i am angry or resentful... or that i blame God... but because i'm sick most of the time, that i don't have the energy to pray or read...this is why you have friends and family pray for ya, because you physically can't... ;)

forgive me for not writing as often, i think my body has had enough chemo.. all i do now is sleep.. i've been asleep most of the past week... so it might take a while for my momentum to come back

questions

i'm going to dedicate my next post to some questions.. so if you have any please comment on this post and i'll get back to ya...

rambles

you know something i have neglected to mention is how pretentious i think blogging is... its an avenue for the blogger to talk about him/herself.. i think it's a real "i'm into myself" thing... i've always thought it, it's also a reason why it took me to long to get this blog started... every time i thought.. hey you should start a blog, my next thought would be... don't be so into yourself...

no offense to any blogger, to each his own right... but i have to say, i feel blogging is acceptable in these types of situations....when your trying to help people out there relate.. i'm not saying this because i'm doing it--cause don't get me wrong... i'll admit, at this moment in time i am somewhat 'into myself'... just because i see how helpful it has been to my wife and our life.. she follows blogs and whatever and it has given us information and also has been an outlet to relate to so we don't feel so alone and the difficulties you go through...that's what i'm hoping to acheive-to be a friend to someone i don't know..

cc makes you a selfish person... and there are plenty of reason why you become selfish... first you receive all this attention from friends and family.. you can get pratically whatever drug you want from the doctors and hospitals (don't worry.. i dont' abuses this.. if anything I need to start asking for things so i don't suffer pointlessly.. something my wife keeps telling me to do)...youre always accomodated for, whether youre at home or at the hospital...(i know you think the hospital.. of course you are going to be accomodated for... but i've noticed a differnece between nurses who know cancer and nurses who don't... either the cancer nurses are very attentive or the other nurses don't attend to patients as much as cc patients)... youre waited on, mainly because you can't do anything most of the time.. but still it contributes to why you become selfish.. granted.. it's a warranted selfishness.. but i think if i'm not aware of it now.. i could become lazy and get used to it.. and when i'm done treatment i could have a hard time getting back to a normal persons routine... essentially it would be somewhat of a 'culture shock' when i don't get what i ask for, or when i ask my wife hey can you get me a glass of water and she'll respond, you can get it yourself...
my wife right now is in the process of reupholstering a chair, and she is taking out all these staples with a knife, so i want to pay attention to her to make sure she doesn't hurt herself....shes a bit clumsy haha

peace

hello

so it's been a while huh??.. i just haven't had much energy these last few days..been very faint.. couldn't stand much.. could barely muster up the energy to talk...

you know come to think of it... i don't remember what feeling normal is like... i'm so used to feeling something wrong, that i forget that this isn't normal... i need to start remembering that..

those were some nice times... not feeling weak, pain, bruised, shakes... mornings were my favorite.. you're all tired.. the sun is lighting your room, and i could just curl up in your duvet, put my arm around my wife and snuggle... now... i wake up 3 time a night from the knee pain... and the first thing i do when i wake up is take a concoction of medication.. 1 pill for pain, dilaudid;1 stool softener, because pain meds make you constipated( sorry to be so graphic); 1 celebrex, because the steroids they prescribe me are practically depleting my bones, which is the cause of my pain, which in turn is giving me arthritis; 1 calcium supplement, again because of the steroids..

one thing i have painfully learnt, and mean that in ever sense of the word is that steroids are the worst thing this planet has invented... when i first started this 'intensification' phase, which was some time in feb or march... they had me on dexamethasone, a steroid... now when you are on steroids the side effects can vary from person to person.. so i'm just going to tell you what i experienced... i only took em from day1-5 of a 21 day cycle that repeats and repeats.. so from day 1 to 5.. i would be dead.. depressed, angry.. and not like you would think.. i was so depressed that the whole aura of the house would change... the house would feel dead... this is how my wife and people who have visited during this time have said... the emotional ups and downs i would have would be ridiculous.. my wife would be doing something in the kitchen and I would yell at her for no good reason.. she could be breathing and I would get mad... my poor wife... now let me tell you when we were first on this drug the doctors didn't mention a word about the possible side effects.. so we thought i was just being a dick and cancer had made me this angry person... eventually we realized that something might be wrong when i got so mad at my wife that I told her to eat out of the trash.. i can't tell you how embarrassed i am of that...after that I asked the doctors.. "i have been getting more short tempered and I have been yelling" etc.. so the first question they asked me was " do you get angry enough to want to kill someone?" I looked at the doctor with shock and slowly replied " noooo.." so then they go on to explain that there are emotional side effects, and that if you have thoughts of suicide and extreme anger...the type that makes you want to actually kill someone...you should bring it up to the doctors. Up till then i just got depressed and quiet for days and became short tempered.. all that seemed to have been normal effects... so that was an unpleasant surprise.. so after day 5.. days 6 and 7 i became MORE depressed.. to the point where i didn't want to make the effort to live... not that i wanted to die, but i didn't see a point in trying.. mind you when your brain function isn't normal, nothing you think is normal... i like to brag and tell my wife i now know what PMS is like... when you have no control over yourself.. i mean i know the steroids interfere with brain functions, i don't know if PMS has the same effect... anyways, so come day 8 until 15 i experienced the worst pain describable... i couldn't sleep.. my body would convulse.. literally, i would lie on the couch and convulse from the amount of pain.. and no matter how much morphine i took, it wouldn't go away... i couldn't walk, all my joints hurt.. it was like a screwdriver drilling from inside my joints trying to get out.. the worst were my knees... my knees still hurt... the pain was for soo long it just wouldn't go away.. my body was exhausted from the pain but i couldn't sleep... it would eventually get soo bad that tears would just fall down my face, because nothing would make it go away.. i think thats just how my body coped.. i wasn't sad or anything but i would cry...

so long story short.. i got off that drug after 3 or 4 months and now I have a different pain... still pain.. but not the same.. i'll talk about the pain i have now some other time...

anyways.. i have to go take some pain pills now.. ahhahahah.. ridiculous.. this coming from the guy that wouldn't take any type of medication before this happened...

peace