no more intensification.

Today was the last day of my intensification phase of chemo! so to celebrate my wife baked some halloween cupcakes ( dark chocolate with cream cheese icing) to give to the hard working peeps at Princess Margaret hospital.

if any of you guys are reading this...thank you so much for everything!

Qi gong.withdrawal.and.cupcakes.

im back...sorry for taking so long to write another post....anyway heres an update on my situation. Remember the pain ive spoken about?...well last week i had to go see a pain specialist to deal with the amount of dilaudid( pain meds) ive been taking. So the doc checked me out, and then decided to give me long lasting (dilaudid) pills. so this means that instead of taking 10 pills a day....i now only have to take 2. so thumbs up!

what the doc failed to mention was that i would experience something a little "uncomfortable" because of this change.

Have any of you watched intervention? well when you come off...or decrease any narcotic that you have been taking for a long time ( ive been on it for about 3 months) your body starts to freak out and you go into withdrawal...i wasnt told this.

so for a couple days my wife and I started to think that my cc was coming back because i was experiencing things like profuse sweating, shakes, stomach cramps...another symptom that is linked to stomach craps....you can guess what....anxiety, and restlessness. nice huh?

So i finally talk to a doc and find out that what i just experienced was the same withdrawal that a heroin addict would experience.....and for anyone who knows me.....thats the LAST thing i thought i would experience in this world. Anyway when i finally do come off this pain med...the docs have assured me that theyll taper my dose slowly so that i dont have to go "cold turkey" haha i cant believe im saying that!

in other news....ive decided to start doing Qi gong. My knees are completely busted and im hoping this is going to help with the fatigue and pain i have. Growing up in tianjin, china...i saw a lot of people practicing this in the park, and i know it works...anyway wish me luck because my wife and I are going to do this together every morning. For anyone who doesn't feel like googling it......Qi gong is a from of martial arts that manipulates energy ( in/around the body).

another piece of great news.....tomorrow is my LAST day of intensification! This phase lasted 30 weeks, approx 7.5 months, and consisted of chemo every week, sometimes twice, with lots of crappy side effects and LOTS of throwing up.....so in about a week....ill be going into a chemo phase called maintenance. This is the phase that people can start going back to school, my strength will come back, immune system will be better( not like yours but not to the extent that i cant go outside)....basically living normally...but still getting small doses of chemo. I actually got married to my wife in china while on maintenance (i was taking small dose chemo pills).

This time its going to be a little different.....ill be getting chemo injections and the pills...so hopefully no relapse..i really believe it wont come back....i feel like this chemo protocol really killed the cc.

So my wife is baking cupcakes tonight (shes decorating them halloween style) to give to the nurses at the hospital tomorrow. We really want to thank them for everything theyve done.....and its also a way for her to celebrate the fact that shes going to have her husband back. I can finally go for a walk in the city with her, go to the movies together...shes gone alone a couple times and its just depressing haha....basically whatever we're about to experience is going to be a hell of a lot better than what we just went through.....either way cupcakes are always welcome in this house.

one last thing...here are some more of my wife's paintings....im trying to get her to make a website for herself because people really responded to her stuff...I know shes attached to all the ones ive put up.....i think i am too because theyre a part of our cc experience....but shes willing to sell prints of these and will paint you your very own lemon piece if you want. anyway its something we can work on now that we're going into maintenance :)

"out with the old. in with the new"

"the Lemon farmer's daughter"

"the miracle"

I hope everyone has a good week....i think i will :)

If anyone wants to buy a print of any of the paintings ive put up on this blog....then just get in touch with my wife Shahrzad. her email is shahrzadbb@gmail.com.

peace

...

sorry for not updating.. still haven't been feeling well...

hope you guys are still checking though!!

are ya?!

peace

sorry no update

hey guys... haven't been feeling well... will update soon...

peace

positive thinking...not as easy as it seems

ok.. so today i'm feeling much better, thanks to my lovely wife pushing me to get on the bike we recently have received...so i got chemo on wednesday... found out i basically don't have knees... which surprisingly I am not too upset about... i think it's because it's nothing compared to lucky... however what did bother me was knowing i'm not going to be able to play football (soccer) again... that kind of got to me.. but i might be getting ahead of myself... i obviously haven't talked to a surgeon or a rheumatologist yet... so who knows what my options are and will be... either way if it's worst case scenario, i.e. no surgery until i'm 40, i'm ok with it...

so lately we are just trying to get back into things... getting my energy level up... eating right... more so trying to focus on the mental aspect of things.. like being positive i.e. thinking about the future.. getting excited for things that even though they may seem small are important to celebrate...like no more steroids... or the fact that its the last cycle of intensification... or even that we might potentially take a short trip to some beach in dec... im trying to think about life instead of forgetting about it... just because I haven't been thinking much about my future at all.....it's hard to think about the future and get excited for things when you are physically not ok. But my wife made a good point today....she said that there is no point waiting for things to get better before you celebrate the good that you have now cause we are always going to have

something to worry about...thats life. For example we thought intensification was going to be

over and now we are confronted with this knee problem.. and who knows what's going on with the transplant stuff... it could be another year...so if we are always waiting for an optimal time to be excited then we will always be waiting and not living.

anyway for dinner a couple nights ago the wifey made sabzi polo and fish.

Sabzi in farsi means green...and polo means rice....so basically we had green rice haha

Its rice with dill and some lime beans in it....its delicious....and we pan fried tilapia (dont worry...we used very little oil) after coating it first in eggs and then in flour with fish seasoning,salt,cayenne pepper,and turmeric.

Cayenne pepper= kills cc

turmeric= shown to prevent cc

tilapia= vitamin D that i need for my bones

dill=my greens for the night

lima beans= full of antioxidants.....bad for cc...good for me :)

i cant find the picture of the finished meal......but it was delicious ;)

eat healthy

peace

Necrosis shmosis...canes are cool.

Hey everyone,

Im writing on behalf of the hubby. He's feeling pretty sick since chemo on wednesday but he wanted me to write about the news we found out.

Basically we finally have a real answer for the pain Nima's been getting in his knees. Part of his chemo protocal is recieving alot of steroids....these are the ones that first made him depressed, angry, agressive (dexamethasone) and secondly the poofy face..... its actually called moon face.... anyway this new steroid (prednisone) has caused nimas bones to degenerate and as a result he's now got avascular necrosis of the knees.....basically there was no oxygen getting to Nimas joints (steroids do this) so the bones have died. Because of this both knee joints have collapsed and he's going to need surgery to fix them....I tried to find an image to show you guys but I could only find one for avascular necrosis of the hip...its basically the same thing....

Surgery at the moment is out of the question because of the chemo...and we really dont know how much longer he's going to be on it....(still waiting on the transplant peeps) but we got our indoor bike in the mail...so thankyouthankyou Niyaz and Nahal...you guys rock...

anyway this whole training for a transplant is going well and Nimas been on the bike everyday......ok maybe not today...he gets a pass :) but the docs say its a good form of exercise to start bringing his body back from all this cc junk...and its not bad for his knees. The docs have also stopped the steroids and Nima has an appointment with a pain specialist in a week.

So since we got this news we've come up with a plan....we are not going to be sad...cuz canes are cool....and from now on when we travel we're going to collect them from every country we visit..

Nimas exact words " Im gonna get a samurai to carve one for me with his sword!"

anyway thanks guys for reading...we are both really grateful for all the support.

love love love

some dinner

here are some meals i've had the past few nights for dinner...

my lovely lady making broccoli soup... packed with nutrients :)
she's fancy with the thyme ...
and at this point she was pulsing in handfuls of spinach in the food processor...
ta da!! oh and heres another dinner...

mmmm... sushi

so these are things you can consider making that are healthy and delicious...

peace

my wifes contact

so some of you liked my wifes stuff... and asked for her info..

My wife's name is Shahrzad and she is one of the most talented people I know... she is also my care taker....which means she has another side to share about this whole cc thing. If you are in the same position as her and need to talk, i know she'd love to help so feel free to email her at shahrzadbb@gmail.com

last nights dinner...

So i figured a good thing to bring up...is how i eat. I think one important aspect of living with cancer is how you take care of yourself....and i want to stress the living part, because just because you've been diagnosed with cc...doesnt mean you have to give up the things you used to like....most of the time anyways hahah.

Ill admit... i LOVE junk food. Pizzas, wings, burgers, fries...you name it....if its bad for you....i love it! well scratch that i dont really have a sweet tooth, but nonetheless I realized that these things and cc just dont go hand in hand. So my wife and I have pretty much made it our goal to not let cc affect our quality of life....and if that means going out of our way to find recipes that are healthier...we'll do it. Maybe one day my wife can write about some desserts shes changed to not have processed sugar in it but todays post is about DINNER.

So here are some things ive replaced, changed up, or just added to my meals.

Since I don't drink sodas anymore (they have TONS of sugar and lots of crap your body doesn't need) I have substituted my fizzy cravings with soda water...something ive always thought was posh to drink but never really liked....well never say never because i love it now.

Then comes the salad. for anyone with cc i really want you to know that you HAVE to eat greens. My mom gave me lots of vegetables growing up and they were most of the time raw so its not that difficult for me to eat but if you have any kind of cc, find a way to eat vegetables everyday and stick to the ones that have more chlorophyl( so the greener the better) because it fights off disease. Just go look at the research and this info is there.

And finally for dinner tonight is the thing that is really bad for you... if you get it from outside. WINGS. Most of the time they're fried and have a lot of sugar ( if i havent said so before, sugar feeds cc cells so treat it like poison because thats what it is.....except the sugars in fruits....thats ok.....and agave...we'll talk about sugar later) anyway so I quickly pan seared the wings with some salt and cayenne pepper ( cayenne pepper has been shown to kill cc cells) then put them in the oven at 425 F for approx 30 mins. And thats how you can make nice, healthy chicken wings that you can eat with whatever sauce you want....my sauces never have sugar in them.

man those wings were 'delish'... homemade always tastes better... and you don't have that narly feeling afterwards when you eat junk food...

eat healthy...

peace

p.s. tonight.. homemade sushi with tuna, carrots and avocado!!!

following through..

well I told you guys that i wanted to show you some of my wifes work. so heres a following through post.


Like i said before..i sleep a lot....so my wife spends her time in the studio coming up with stuff. shes been doing paintings based on the phrase "when life gives you lemons" and so the paintings are different ways you deal with "lemons"....this is just my simplified version of her explanation...

anyway here are some:


" Are you sure i need more lemons"


"No thank you, I don't like lemonade"


"Dont throw lemons"


"There's no more room in the lemon basket"


"What Lemons?"

by the way.. i'm having wings tonight... making them myself... first time... and don't worry... it's healthy... actually Shahrzad is following my instructions, cause I can't do anything without shaking :)

real quick

does any one have a nice pic for a desktop background? or a site to go to? or an artist that has some nice work...

i'm tired of my background

any suggestions?

transplant plan

man .. i'm having a hard time writing these post...it's not easy being motivated not having energy.. these days all i've been doing is sleeping... I don't know if it's the pain medication, or if it's just my body catching up on some rest. I think it's a bit of both...

so my wife and I have come up with a "training" regime for this transplant. We figure if it's going to happen my body should be prepared for it. The plan is to stay away from red meat as much as possible and start some form of exercise. The plan doesn't incorporate much that i'm not already doing, like not having sugar... i have natural sugars like honey and maple.. but nothing processed... so no dextrose, fructose or whatever else... I also try to have as much vegetables and fruit as I can. The reason I haven't been exercising much this past year is first I haven't had the energy and i haven't had much pain control... but now that this harsh cycle of intensification is almost over and I have finally found a pain management regime that works my brother and sister have helped in buying us a bicycle for me to use... one of those indoor ones... i'm really looking forward to this, cause I am really tired of being tired and "energy-less"..

you know something i haven't mentioned in a while is my wife... she has been for sometime now getting back into her painting... she's doing this series with lemons... i think it's awesome... i'll post up some of her work and have her explain some of it... so yeah she's been busy spending time in her studio this past month...

anyways... i know i said i'll talk about some things in previous posts (i.e. consultation)... i'll get to that stuff when i'm a bit more motivated and have a bit more energy... so don't think i'm one of those people that says things but doesnt follow through...

all you take care

peace

There’s a lion in my room.

I guess I wanted to write something for those people out there who have a lion in there room…

Being the wife of someone who is dealing with cancer I feel like a lot of the time I’m this huge giant mess running around under the guise of a put together caretaker...i’m not….I have my days I’m sure…but on most days fear likes to accompany me pretty much everywhere I go. Why am I telling you this? Well when I was talking about a lion in my room…. I was referring to fear…but not just any fear…the fear I’m talking about is a special little gift saved for those people who are dealing with a cancer diagnosis, be it yourself, a brother, sister, parent, friend, or in my case my husband.

But what are we afraid of?

I can speak only for myself on this one but I know that when I first found out that Nima had cc my entire world shifted. I went from living MY life to wanting to protect Nimas…no matter what that meant. I decided I needed to find out everything this cc was made of…get to know this attacker…. find out its weaknesses. Because of this I inevitably had to visit the idea of death no matter how much it scared me. No matter how you slice this you just cant ignore it…and not talking about it does nothing to make it go away…. trust me I tried. The conversations about death when Nima was first diagnosed never happened…. not even a question to that fact. He was going to make it and that’s that.

Since Nima’s relapse I’ve visited the idea of death more and more. At first I would hate myself for the thought…I think I felt as though the very thought of death was almost an open invitation. I could see it in my head on a blank white card:

Nima and Shahrzad would like to invite you death to a dinner party e.t.c

So every time the thought of Nima dying fought its way into my mind I simply pushed it out…there was no way I was going to scare Nima…even if that meant that there would be things left unsaid if the worst was to happen.

So what exactly am I trying to say?

Well one lazy afternoon on the couch my wonderful husband looked at me and asked

“Joonam…. do you want to talk about death?”

And after having the “death” talk and saying everything we needed each other to know I realized something great…. we were both relieved!

Now that this whole transplant situation has come up, I feel like I really want to share this with anyone who has a lion in their room.

What im trying to say is this:

Imagine you have a lion in your room. He’s there and you’ve found ways to avoid him but there is still a huge chance that one day….no matter how many precautions you’ve taken...the lion will get you. So what would you prefer?

Would you want your friends and family to pretend that the lion is not there…. fight the statistics of lions in rooms, ask for someone else to check and see if the lion is there, never even talk about the lion?

Or would you want them to accept it as you have done and be there for you?

Because bottom line accepting the lion in your room in no way means that you have given up and you SHOULD keep looking for ways to get rid of him…don’t always listen to lion wranglers (ok maybe I’m taking this metaphor a bit too far haha….but doctors can be wrong). But denying his existence only makes the person whose lion we are talking about feel alone in their fear.

The Lion is there…we are not going to live our lives being afraid of the day that he gets us… because I really believe that he wont... but we’ve made sure to say the things we’ve needed to say…. just in case.

Thanks for letting me write this hubby.

Coming up.....

For the next post I wanted you guys to hear a little bit from my wife.

I think her point of view on this topic will really help people.

finally some feedback

hey guys... i miss writing .. and i'm sorry i haven't been doing that much these days... physically wasn't feeling up for it...

so let me get into it....

So yesterday we went into the docs office and got the run down... so basically they found a "low resolution" match from a donor.. which means... just looking at the numbers they found someones bone marrow with 9 out of 10 markers that match mine.. which is excellent... now what's going to happen is they are going to do a "high resolution" test to see if what they saw on the low resolution is actually a match...

the chances of a low resolution match being viable when put through a high resolution test is 40-50%... which is good enough for them to consider continuing with the testing and for having called me in to have a talk. So at the end of the day, they really just called me in

basically to tell me the risks and procedu

re of a transplant:

The pre transplant phase is all about preparing my body for the transplant. They have to do a lot of tests on myself and the donor. What they are looking for is no disease in the donor and they test me to see if I am healthy enough to receive the transplant.. so that means my organs have to be scanned and poked to see if they can even deal with the chemo coming up.

After all the tests... theyll ask the donor for his/her consent and once they receive it theyll check me into the hospital....where ill be for a while....

Once im in the hospital they will give me a cocktail of high does chemothera

py for a week and approx. 2 days of radiation to completely destroy my immune system... this is apparently going to be the roughest chemo ill ever have...its like they have to kill me. Once im totally without bone marrow they'll tranfuse me with the donor marrow...which looks exactly like blood. ( just to explain a little...your bone marrow is where your blood is produced in your body....in your blood you have white blood cells..which are the cells that fight disease...so to get rid of my bone marrow...it means that ill have no way of fighting off infection) anyway to transfuse it they just put it in a bag and they run it through my PICC line ( a PICC is basically a temporary IV that ive had in my arm for the entire treatment...just so they don't have to keep poking me)

Heres a basic run down of a BMT ( bone marrow transplant):

• without a transplant theres a 80-100% chance that ill relapse.....so thats not good
• when i get the transplant the first 21 days are extremely critical.
• i will be susceptible to infections and various diseases... if i get one ill have a 50% chance of dying.
• There is a good chance that ill have organ damage...one in particular is V.O.D. it is basically where the arteries in my liver clot and cause damage...if i get this disease there is a 80% of mortality.. and there is a up to 10% chance of me getting it.
• My lungs can be scarred severely and i may need a transplant if it gets really bad...this can also happen to my kidneys
• after about 3 to 4 weeks.. if my body has accepted the donor marrow ( this is called engraftment) I should be able to leave the hospital... i will be sent home with immuno suppressants to help my body deal with the foreign marrow.. cause i will essentially have 2 different immune systems... mine and the donors.. we are basically trying to find a balance between the 2...
• the first 3 months are important for engraftment...but there are a few complications that can arise if the marrow IS accepted....the major one is graft vs host disease (GVH).. this is when my immune system, which by this time should be mostly the donors, attacks my body.. the intensity can vary from a skin rash to burn blisters on my skin...to complete organ failure... if i get GVH it is treatable with steroids but thats doesnt always work... and there is never really a cut off time for my body....basically i can develop GVH years and years later..
• so the process of getting the transplant means that I will most likely be really weak and end up in a wheel chair for the first 100 days because we are trying to find a balance in my body with the donor system.

there are some cases where after 3 months people gain normal function... but most of the time this whole transplant process will take about a year... so in a year... my life will some what go back to normal...

I have to say hearing that i have to do this for another year was the worst part for me... I broke down in the room when I found that out.. I didn't want to do this for another year....i wanted to just give up... obviously i'm not thinking this now...I was very overwhelmed yesterday... its just a lot to take in ... I'm definitely more confident with everything now...

so we have told the doctors to continue with the testing and they will get back to us in about 4 to 6 weeks with the final verdict on whether we have a match and if everything with the donor is ready to roll.. so for now we wait and pray ...

anyways i hope everything is well with all you guys...please do keep us in your thoughts for a while.. we really need it...thanks :)

and when it comes to this decision whether or not to do the transplant....your input and ideas are very much appreciated.....so far we are leaning towards doing it....just cuz the alternative doest seem to be that great....not so keen on the whole dying thing ha ha

peace

big day

i'm going to explain in detail tomorrow what happened today...

it's been a long day and we're in rochester... but just quickly...

the meeting went well... there is 40% potential match... and we said to go along with the test to have a transplant...

keep praying...

peace

sorry no info

sorry for not posting anything new recently... but anyways.. just a reminder i'm seeing the transplant team tomorrow (technically today)... keep me in your thoughts... i'll let you guys know what happened...

peace