Join Riz's Fight vs. Rare Cancer

Dear Family and Friends,

This is not an ordinary plea for help. This is an extraordinary one. One that will hopefully not only bring hope to our family but many many more.

As you may all know our baby sis, Riz, has been living the last 3 years of her life (to the fullest) with a rare Cancer. She is doing a breakthrough Immunotherapy treatment that has given us the most hope we have ever had of curing Riz from Stage 4 Adrenal Cancer.  Her oncologists are hopeful that this could also mean more for the future of cancer care with more exposure and further research on the treatment that she is already responding to.  If you know anyone who has gone through cancer (fought or is still fighting) or even if you don't I hope reading our story of our sister’s journey and  donating to any cancer funds or research is something you think about. 

But If you stop reading here that's ok but here’s what you need to know: Please join us to raise money for Riz’s continued treatment in Immunotherapy! It is our hope that this will be the answer to Riz beating Adrenal Cancer once and for all. The fact is that this is one of the only effective treatments we have found and it is giving us so much hope for Riz and for other individuals with rare cancer!

Here are some other things we would like to share with you on why we would like your support: 
- Cancer care is outrageous, financially devastating and emotionally distressing not only to our warrior but also to our family and families like ours. 
-   No one tells you the uncertainty, waiting game, lack of knowledge or control you have navigating the cancer field until you’re in it and you’re lost. We’ve been fortunate to have GWU, NIH, Georgetown, and Virginia Hospital Center teams to fight, fight, fight and not ever give up on Riz. And we're not giving up either! 
-   Riz is working full time, graduated with a Masters, helping others as a therapist and yet has to be faced with this unfortunate illness and the financial burden that comes with it.  (To be honest: We forget that she has cancer sometimes because she has hair but also because she works harder than most people we know. )
-  Riz is doing Immunotherapy and IT'S WORKING! We have been hoping and praying for something that would help longer term.  We are not sure if you know this yet but when new treatment drugs come out they place all of the funding into the top cancers which is great however Riz has a rare cancer with not a lot of research done on it or treatment options. New treatments like Immunotherapy get researched on big cancers and then when you ask for approval for people who other treatments haven't worked and they have a rare cancer- Insurance denies it stating "there is no research evidence to support that this will be effective." Riz waited a year to be approved for Immnunotherapy and it was only because we did not have a way to systemically stop her cancer from growing that she finally got approval because trying a drug on a patient that has no research is better than trying nothing after she has tried them all. Now since there is such a great response we are hoping she will continue! This could also change cancer care, especially for those with rare cancers, as her case can be published due to her amazing response with her late stage and the rarity of her cancer. We hope that her response can lead to treatment options for others as well as faster treatment times. Research needs to continue at GWU, which is what we need your help with. To fund the future of Riz’s life and hopefully others. -  We’re hoping for a cancer free future for all, but I think Riz is hoping for a future where  she and everyone can be cancer free and that they try Immunotherapy first and not as a last resort. Not after this organ and that being resected, after local radiation, after trying multiple rounds of chemo, losing her hair 2 different times,  cyberknife multiple times… and I could continue but you get the point. FIRST step not last hope. 
-  If Riz can play any part of your life as she has in ours I hope it is to show you to never give up, stay positive, you can live with some of the toughest things and continue to strive for more. We're not saying she didnt have any rough days- we all have had a lot of them but I think she would feel a whole lot better that if she went through all the things that didn’t work that she can help someone down the road to not go through that much.  But until then we need to continue her treatment...For her life, so she can continue to be part of our lives and yours, and so she can continue to spread her positivity to others. 

Please join us to raise money for Riz’s continued treatment in Immunotherapy! You are funding hope for our warrior. As always your love, positivity, good vibes, and prayers are always appreciated! 

With Love,
Ray and Rozh Chener 
and the Chener family 

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For those of you still reading….. We want to share with you 3 moments that have been pivotal to our family and Riz and what we have learned from those moments: 

1. Her Initial Diagnosis and Surgery: Oct/Nov. 2013 
Picture: November 26, 2013. ICU after Riz's 1st major surgery. 

Riz was diagnosed and had a football size tumor on her Adrenal Gland (you have two and they are on your kidneys.) Within 2 days Dr. El-Shami, her amazing oncologist, had secured a team of surgeons. Riz and I (Ray) went to talk to her team of suregeons at GWU: Dr. Lin and Dr. Jarrett.  Dr. Lin had great bedside manner but with the severity of this case he was clearly having a hard time trying to make Riz comfortable and express how this meant a very dangerous surgery.
He starts talking about what would happen once she was on the operating table and what organ he would start to take out first, adrenal gland, and then if there was cancer on the kidney he didn't want to risk spread to other organs and so he would take that out too, and then if there was cancer on the pancreas that would have to go as well, possibly sections of the liver as that would regenrate.....
*I remember thinking: STOP- I dont know what the pancreas does- is that important- that's a stupid question?  Do NOT ask, you''ll look dumb. wait WHAT?! YOU ASK RIGHT NOW your sister's organs could be taken out one by one, you have no idea how dangerous that is and how she can live without that, and you're afraid of looking stupid? 
He was very patient with our many questions. But He didn't stop there... Dr. Lin continues with saying that the hardest part is the bowels and whats behind them. He says that if there is cancer on the intestines he will have to spend time taking it out and then recontructing the bowels which can take a long time and is difficult. 
He didn't stop there either...Dr. Lin continues with saying that the other thing we need to know is that he might get to the operating table, observe the organs, and have to sew Riz back up and have to DO NOTHING because even though we have CT scans not everything is going to be picked up by the scans so the cancer could have spread to places that are too dangerous to resect and we won't know until were on the operating table. And in that case that would be one of the scenarios where we can not do anything. 
If there ever was a day where my world just completely stopped it was that. In trying to take this information and processing it and then explaining it to your parents so Riz wouldn't have to that was probably second worst to listening to Dr. Lin.  
Here is what we all learned  from her diagnosis, her first meeting with Dr. Lin, and her first surgery: 
- Life is short. That is an understatement. LIFE IS SHORT. You never know know if you will make it to tomorrow so live every day to the fullest. 
- Don't take your health for granted. Its only when we lose our health that we realize how amazing the human body is but we have to take care of it.  
- Our family is strong, stronger together, and talking about everything and letting in others was more helpful because you can't do everything alone. 
- People in our community and lives are so wonderful and generous with thier support and prayers.Sometimes the world feels like there are no good people left in it but that is not true and not our experience at all. We are so grateful to everyones support.  
-  Riz is a warrior. Has been from the get go and will probably never stop being one. Some people crumble at the sight of adversity but Riz has truly experienced the waves of emotions and found a way to stay positive despite the hardships and that has made a huge impact on our whole family. 
- There might be things you can't control in life but you can control your thoughts and your attitude. The more hope and positivity you have the better the outcomes. 
- Her oncologist, Dr. El-Shami is a man of science however he has managed to never allow Riz or our family lose hope. He always talked to Riz in  a positive way but realist as well. Even though there have been many many ups and downs since her initial diagnosis we are never losing hope that things will turn around. That Riz will be cancer free for good. 

2.  When Riz lost her hair. 
Riz lost her hair twice. Once in the very beginning at the start of chemo and the other time when she had gone through chemo, 2 surgeries, 25 days of local radiation only to find out that her cancer had come back bigger and badder.

January 2014. The first time Riz lost her hair was really hard. After her 1st big surgery she started Chemotherapy.  It only took 3 weeks from her first chemo session for her hair to start falling out. (They do not tell you that.)  I was away in Phoenix for the first time her hair fell out and I remember Rozh telling me that she came up to Rozh and started crying hysterically after her hair had fallen out in chunks in the shower. Rozh said that she told her all the things that she could to comfort her: that hair is dumb anyway, she's middle eastern she could stand to lose some... but it was clearly a hard thing to come to grips with. But It isn't really about the hair now is it?
When we see someone who is bald thats a woman we think Cancer. Bald = the image of cancer or somethings wrong. Or when we see a woman with a scarf a certain way we can think Cancer too. Its vulnerable and everyone kinda assumes why you're bald and it feels like an open wound. Riz went from looking well and healthy to looking sick and feeling sick from how strong the chemo was. 
Rozh and her decided it was time to take back control and shave the rest off. So they planned a shaving party to stick it to Cancer.  My mom uncontrolably sobbed the whole time, dad sullen obviously that he had to help shave his youngest daughter's hair, and Rozh trying the best she can to make it all hurt less. 
Riz had never been private about her having cancer however it was still a vulnerable thing to go from everyone seeing you with long hair to short to nothing.  

Picture: Deniro FaceTime is a great tool for when living far away from each other. 

September 2014. The second time Riz lost her hair was worse emotionally for different reasons. She was used to wearing scarfs and all of that and she was actually ok with shaving it herself first before it fell out in chunks in the shower.  (Na-uh stupid cancer you will not do that again.) But after a year of stuggling she had to do a stronger chemo regimen as her cancer had spread more.  They added a chemotherapy medicine called: "The Red Devil." I was still away in Phoenix but I flew in to tell my dad who was traveling that once he came back that she would have to do chemo all over again. 
We always worried that she might die from this, and I think so did she, but she didn't  REALLY let it out until this point. It was clear that weekend I flew back. I mean Stage 4 Adrenal cancer- who comes back from Stage 4 rare lack of researched cancer with limited treatments? But when you're hit with we need a stronger chemo regimen because its not working- you bet your bum you start thinking about how life might be WAY shorter than expected for you baby sis. 
For those who have never seen chemo or don't known anything about it- here's the gist... CHEMO = Poison. They poison all your cells, good and bad, hoping that the cancer cells die and stop replicating and that the good will eventually regenerate. Well in poisoning cells you are also poisoning the person. For me personally I knew that I couldnt just stay so far away from my family during these times and moved back after seeing how much harder this was. How it made Riz feel sooooooo terrible, and changed the dynamics of everything.
That was the best move ever. Even though this was unfair this was happening to someone who hadn't done anything terrible,  we as a family were completely reunited. Supporting each other. Allowing each other to cry. Trying to do things together to get through it.  Oh and by the way this girl is still going to school with amazing accomodations from GWU. WHAT A BAD A** right?!
We got through the bad days together and that was the best gift. It ironic to say that Cancer gave us a gift but it did. At this point dark jokes start to happen because without humor you just might lose it, but we were having fun, appreciating each other more, getting to know each other on a way different level that it felt like it didnt matter what life through our way that we would survive together. 

So what did we learn from Riz losing her hair:
- When life gives you seriously sour lemons, you still have to make lemonade.  -  Humor is such a great way to survive. 
- Being there for each other was possible and even if we didnt know how to help each other, just being there helped. We will be there for each other through thick and thin!
- Understanding from others was crucial. There were a lot of times where I couldnt tell you how hard things were but it felt like no one truly understood our situation and as a family with a person in it going through cancer- we technically are all going through it too. So please be kind to other people and family members of loved ones with cancer- its hard being a caretaker or family member and it impacting things on all levels. 
- Appreciate the way you look and what you have now. Don't be vain. When you start thinking oh I hate my hair or nose or whatever- just appreciate that you have a functioning body. 
- It will get worse before it gets better. We thought we were out of the woods and then cancer came back stronger.... at that point Riz could have chosen to give up but she didnt. Really any one can chose to give up on on whatever it is but fill your life with people who give you happiness and hope, and try and hang on as much and as hard as you can. On the toughest days its the hardest but acknowledge it and know that theres hopefully tomorrow.... Riz loves this quote by one of her heroes and I understand why: 

"Let me tell you something you already know. The world ain’t all sunshine and rainbows. It is a very mean and nasty place and I don’t care how tough you are, it will beat you to your knees and keep you there permanently if you let it. But it ain’t about how hard you hit; it’s about how hard you can get hit and keep moving forward. That’s how winning is done." - Rocky
Picture: Riz at the Rocky Steps in Philly! 


3.  Double Thoracotomy and Healing– August/ September 2015

Between chemotherapy failing for the second time in December 2014 and August 2015,  Riz had now had cancer further spread to lungs, liver, and spine. In this time Riz had cyberkife on her liver and spine twice each, a liver surgery, and been hospitalized twice as a consequences of these treatments.

Riz was at NIH at this time and got into NIH because no medications/chemo worked to systemically slow down her cancer and would continue to have new tumors and lesions on her lungs.  If we think of cancer like a pimple: Think of medications and chemo as preventative acne medication and surgery and cyberknife as popping the pimple.  We needed preventative or else we would be cutting away at organs continuously.

Riz got into NIH on an “adrenal cancer protocol” earlier that year but the protocol was concluding and therefore Riz could not be part of NIH anymore because there was nobody studying Adrenal Cancer anymore. She did however come just in time to be seen by a lung surgeon, Dr. Schrump, who was very skilled at Thoracotomies.

 Riz had lung surgery before but not like this and Dr. Schrump wanted Riz to get a thoracotomy on her left and right lung as she had multiple lesions on both sides.  Because Riz had lung surgery before, her lung capacity was seriously diminished and Dr. Schrump had the task of not only completing the surgery but making sure that her lungs still worked efficiently without help from medical devices down the road and that he did not resect any part of the lung that he truly did not need to and still have good margins to ensure that he had got all of the cancer cells so they wouldn’t continue to spread.

At this point our family is a pro at navigating the hospitals and understanding how everything works and exactly what we need and how to communicate and advocate for ourselves.  Things somehow get less and more scary as you continue care.  You know what to expect and have been in this situation enough times to release the uncertainty but because of that same point you wonder how many more times you keep having to  do this and that thought is scary.

Picture: Riz walking and breathing in the hallways recovering from her 1st lung surgery. 

So  in August Riz completes her first thoracotomy lung surgery and she will have to be in the ICU for 1-3 days until she walk around without her heart rate skyrocketing and breathe so she can hit a certain number on the Incentive Spirometer ( The wonderful trophy you get after every surgery to work on breathing and help prevent lung collapse). She had an epidural because of the pain that comes with thoracotomies and she had 2 chest tubes to drain the fluid, which they take out before you are ready to go home.  (She jokes that she’s Bionic Woman maybe even a Cyclops) Even with the Epidural the pain of trying to take breath deep breaths was so painful for her and walking around with chest tubes sucks. She pushes through like she always does. Tries so hard every single day. Walk. Breathe. Walk. Breathe. She does a great job and after 3 difficult hard working days of the ICU and 3 hard working days on a regular unit she gets to go home.  She recovers really nicely in time for her second one.


Picture:  Riz not letting this defeat her! 

Her Second Thoracotomy was a Month later. So theoretically this should be easy because well we just did this, but in reality the lung capacity is going to be less, therefore it is going to be much harder to walk and breathe, it going to take a whole lot more effort and hard work. 
DAY 1: She’s walking up and down the hallway to get out of the ICU asap, into a regular room, so she can heal and go home. There are a lot of painful moments but she didn’t have a choice but to push through. My parents would spend the days with her in the ICU encouraging her to continue and push through. She begins to have higher heart rates and low blood pressure that the team says to her she can’t walk around anymore unless her blood pressure is at a certain point. If its not then she’s not going for a walk.
DAY 2: She’s so frustrated and in pain and disappointed that she can’t walk around to work on getting better unless her blood pressure is good.  She is having a rough rough day even after her hard work all day walking and breathing she still can’t hit a certain number on the stupid incentive spirometer.
DAY 3: She tells me TODAY is going to be the day she gets out of the ICU- she’s gonna do it. She says she worked hard and has been doing great but she can push more.  (Nope- it doesn’t happen.) She cries to me and Rozh that night that she feels like she should have been able to do it by today as she did last time.  Her body is just not working with her. Its betraying her. COME ON!! We try our best to just listen  and point out that her body will not always be this way.
DAY 4: She’s about had it….. She thanks me and the whole family for always being there to support her and that she was in a bad mood yesterday and was feeling hopeless but that letting it all out was good and she is gonna read some inspirational quotes and listen to some good music to help her conquer the day. She no doubt listens to Eye of the Tiger.
“It’s the eye of the tiger”…Walk…. “it’s the thrill of the fight”…. Breathe…. “rising up to the challenge of our rivals”… Walk Breathe. Walk. Breathe... “And the last known survivor stalks his prey in the night.”  WALK. BREATHE. WALK. BREATHE…” And he’s watching us all with the EYEEE of the TIGER!”  
SHE’S GOT IT! She does what she set her mind do and is transferred to a room and is out of the ICU.  She is sooo happy! She is able to go home 3 days later.  

She’s healing a lot slower for this lung surgery however she wants to have fun and be normal when our cousin Nawaz and Uncle Awat come for a visit from London in October. Me (Ray), my father, my uncle, Nawaz and Riz decide to travel to Philly, Atlantic City, and New York for a couple of days. Riz being one of the boys has to be there with us obviously but my mom pleads with her not to go as she will have a hard time keeping up- she can’t walk as fast as others and that might be hard for her. NO. 

So WE go. We all can see she’s struggling to walk around and breathe and this is now October in NY so it’s cold which makes it even harder to breathe.  But does that stop her? No. We all spent a lot of time walking around and she’d speak up on her own and ask us to take a break every so often. Other times we’d volunteer a break because WE needed one. And the rest of the time we linked arms with her and walked with her. She’d apologize for “inconveniencing” everyone and Nawaz would tell her to shut up and would make a joke about how fat he was and how he really felt less embarrassed about being fat and because they were stopping for her and not him that saved him from crying himself to sleep at night, haha. That Trip was the best! We had such a great time exploring and spending time together, endless jokes, picking on each other lovingly, and really taking care of each other.  Pure fun.

 
Picture: Uncle Awat and Riz taking a break and laughing.

What We learned from the lung surgeries and in healing from them:
-       Again, your body is a blessing. Be grateful that you are breathing and walking and the things  you are able to do.   
-       Life has Incentive Spirometers. Every breath is a victory. Some days suck and are going to be difficult but you can not lose sight of your goal.  And if you do, try and start fresh the next day acknowledging your hard work not just how you didn’t reach your goal yet.
-       The mind is a powerful thing. Aside from serious chemical imbalances that some individuals have, there is something very powerful about positivity and keeping your mindset rejuvenated. This doesn’t mean that its thinking that everything is great and being in la la land but more as if you acknowledge that some things really suck and be genuine about it AND continue to try and be positive and work towards your goals- YOU CAN DO ANYTHING!
-       You have to have rewards for yourself. Whether it is on a small basis daily that you look forward to or something like traveling- DO IT. Life is so short and you can’t just work work work all of the time.  Enjoy life.
-       You are going to miss out on a lot of experiences if you choose to limit yourself or listen to other’s limitations of you. Riz could have said well my mom is right I can’t walk that fast so I shouldn’t go. But she didn’t and she would have missed out on a wonderful time. My mother has the best of intentions but maybe others that limit you do not and so if you don’t push the limits you will never know what you can become or what you will experiences.
-       Our family  and friends are truly the best.  From our immediate family to our extended and even our friends  the support and understanding that you have all given us has made such a tremendous impact on our lives, especially in these hard times. THANK YOU SO MUCH.
-       We can still have fun, make jokes, make fun of each other, and make light of situations to make sure that we have the best time instead of worrying and being anxious about how things will work out. We have tried to fill the days with fun and lightheartedness and that is what has helped us get through. Being there for each other but also trying to make the best of it all.
-       And last but not least: My sister is a high achiever and is seriously goal oriented. She puts on a really strong front that she’s got it, she can do it by herself, everything is great and most of the time it is  and she really does have it until she’s been trying at an insanely high level and naturally she’s tired of not getting the results she’s working so hard for. But let me tell you what I know to be a fact…. Her number one goal in her life right now is: TO KNOCKOUT CANCER….. and my god I pray for anything that stands in her way because I KNOW that she is going to achieve that goal  NO MATTER WHAT IT TAKES!!!! Cancer is going DOWN!


WE appreciate all your help in aiding Riz in achieving her goal of beating cancer.  Your likes, shares, prayers, positive vibes, donations all help to continue Riz’s immunotherapy treatments! We are so grateful once again for everyone’s contributions to this cause!