So we got the results. Mri came back clean. No regrowth or cancer activity yet. The cavitity is depicting normal changes and collapsing as expected.

But, the hubby has been have issues, shakes and tremors and cluster headaches.  So we asked what’s going on cause usually that’s attributed to tumor /cancer activity.

After some investigation,  the doctor determined the hubbys screws are loose.


So we weren’t aware screws were used to reattach the hubby’s skull. I was aware they use this mesh but the docs never specified about screws and right after surgery i was more worried about him being alive and functioning.  So we kind of just found out he had screws in his head.

What’s happening is the skin, fat and tissue is trying to grow and heal. But because of the location, it’s taking long and having problems cause its constantly being touched. So basically there is nothing cushioning the screws yet. And when there is pressure, its from grinding on the skull cause there is no fat as a barrier, i.e. his screws are loose without a protective barrier or fat. This is causing most of his problems, but particularly head pressure and sensitivity to weather causing migranes.

So it’s nice to have answers. But now it’s another waiting game. Basically the hubby has to try really hard not to touch or sleep on that spot and use protective gear to cushion the area. And just wait and see how it heals.  At the same time, if it doesn’t heal properly he’s at risk for infection.

So no cancer, but looming possibility of infection.

But a lot makes sense now, like electronics have static when the hubby is close by…

Some pics of the cancer center






I thinking waiting room waiting is waiting of the worst kind. Here I sit, alone, with a chiper morning game show playing in the background.  If I hear a buzzer one more time I just may throw my shoe at the TV.

And I’ve tried every seat in this waiting room, all seem to be under a sub zero degree vent. Like seriously do you not believe in heat?!

The worst part is not knowing.  The control is out of your hands. Maybe the hubby will get sick in there. Maybe he will have a sezisure. Maybe they find what we dred finding.  The radiologist could be in there right now trying to capture the best angle of something. And that’s what’s scary. That these are the moments where they’ll may be something.

You sit here and wait and can only imagine what the test will uncover.

Waiting room waiting is time being held captive to your nightmares.

Atleast for me.

The hubby usually sleeps throughout his testing and procedures.













Halloween 2015 in pictures.









Once ever week or ever other week I like to take me group to Manhattan.  For my clients, most don’t get to go explore outside of program hours. This was earlier this month. Took my group to Washington Square Park. When we got there NYU students were doinf a promotion for Relay for Life. Decorate a link in honor for someone with Cancer. My group wanted to part take. So I made one for the hubby. The goal was to get enough links to create  “links of hope” and ring it around the fountain.









It’s been a rough week at home and at work. The stress was getting to me and I was feeling it. Then I had a work day like this…took my group for a tourist day in they city.  Being in Manhattan,  reminded me of the love I have for this city that never sleeps. It reminded me of things I take for granted and have become accostumed to being privileged to. As you stand next to a skyscraper and in midst a crowd of 100’s, you are reminded you are only a small indefinitable portion in this big bad world. As we walked and weaved through yellow cabbies, i felt the pressure on my shoulders being lifted. As I looked at the awe and wonder on my clients faces, i felt my heart warming. If only for afew, it was enough for me. The City that never sleeps. My city. ♥.

My,  my has it really been that long since I’ve last posted? This is the longest I have gone without blogging. And that’s where I left off blogging? In the middle of a pivotal part of a story? Harsh.

So, if I still have any followers reading this blog,

First and foremost,  I have to inform you Omar did indeed have his second brain surgery. He is alive and trying to be well. Unfortunately,  he has been feeling ill the last few months. We’re toughing it out. In less than two weeks he’ll be having a full work up and cancer check up with a MRI and meet with his nuero oncologist. So stressed and worried about this which is part of why I’m up at 3:30am

Secondly,  my furbaby Bianca. I know you all missed pictures of her absolute cuteness. She had her yearly check up last month and unfortunately her teeth have gotten worse. This week she will be having dental surgery to remove several infected teeth. Since she will be under, she will be getting spayed at the same time. I could never afford getting her fixed with my retail check so now i can finally get it done for her. I’m so anxious and nervous for my little doggie.

Thirdly, I no longer work retail for various reason. I miss my Levi’s jeans department like crazy. Those jeans have been through it all with me and that stock room has shared my blood,  sweat and tears.  But, I held resentment in my heart. With the hubby getting sick again , I had to take a leave of absence from work. But, it was an emergency. I didn’t have notice to give. They made the process difficult and stressful.  Instead of clearing my schedule for the week, just taking me off while my application for a leave was being processed, I had to call out every single day. Which tarnished my attendance recorded. But also, I had to leave the hubby’s bed side while he was in the hospital to call out otherwise I would be marked as a no call no show and three of those is autoterminatation. I didnt know at the time but they also made me take a personal leave of absence instead of a fmla . So, if i tried to collect aasistance …i would of been denied. My other job, one email and i was taken care of. Was put on fmla the next day and still invited to work events the whole time i was out. Since everything happened with the hubby so sudden i didnt have the time or knowledge that i could of applied for assistance. I had my taxes in savings and i lived off of that when i was out of work. But, point is, I held a grudge against the treatment I got from my retail job. Not only going on leave but returning back. It was a full two weeks before they me back on schedule and they tried to give me this insane schedule , and then tried to cheat me my promoised 25 hours. So when I returned from leave, the strings were already broken. I didn’t love or feel loyal to the place anymore. I countined to work there just weekends for awhile. But, as of August I ended my three years of working retail and resigned.

I still work at the other job. It’s a day service program for people with developmental disabilities.  I work part time but higher end part time 30 hours a week atleast. For the most part it’s still amazing, I love what I do. But, lately, it’s been frustrating. Feeling like a lot is dumped on my side of the program and the other side is babied. I can be self sufficent so I can get over that. But, then we’re asked to pick up the slack and cover for the other side when someone is out and add a million things to what we’re already doing….but not go over our time. I don’t mind helping out, I don’t mind doing more. But there is only so much you can do in so many hours and then we’re only allowed to stay late when its beneficial for other people. So, yeah. Love my job, love what I do. But the politics is getting to me and I’m not excatly skipping into work anymore.

That’s the three main things. A million other things have happened, are happening now and probably a million more things will happen tomorrow . But, there is nothing we can do but face them.

Or hide in a blanket fort.

It is getting chilly outside.. .

I always found it odd doctors mark with a sharpie where they will be performing surgery. But that’s what Omar’s surgeon did.

Omar’s surgeon came into our secluded area to review his chart and testing results from the previous day. When he finished with the charts  he looked at us in the eye one at a time and said “I have to mark you.”  I nodded to Omar  and he tilted his head and the doctor scribbled his initials on Omar’s left side of the face, by the eyebrow.

The whole situation itself is surreal but in the back of my consciousness i couldn’t help but get hung up on this insignificant detail. After all, it is just ink on skin. But, in my head I was highly furious/panicked. I was thinking they should have a patient’s chart memorized before they even touch a person. Do they really need to be reminded of what operation they are about to perform?Don’t you already have a mental map of where you are making an incision on a human body? How do you not clearly remember what side you have to dissect? Would they seriously place a blade at random to a person? Do you even know what you are doing to my fiancee?

Plus, for Omar, this is his second surgery. He already has scarring clearly displaying where to operate… I know it’s such an minor insignificant thing but all this was screaming in the back of my head as I watched the doctor scribble his initials onto my hubby’s skin and stayed starring at the shinny wet ink until it dried.

Finally,  the doctors finalized everything and they gave us a moment to say goodbye. There isn’t enough comfort in the world to be given in these situations.

We both had tears sneaking out. We both knew it was okay to cry but both fought to be solid and strong…always trying to take care of each other. I fought back the tears and tried to personify calm and strength and reassurance for him. I gave him a hug and kiss and told him I love him and I promise to be there when he wakes up. They started wheeling him away on the stretcher and as I walked alongside tears rolled down my face. I could see the fear in the shine of his eyes. He was struggling to hold it together all morning and i saw the breaking point in the brink of his eyes. It took everything I had not to throw myself on the stretcher like a crazy person. The nurses were turning the stretcher to push through the doors that would lead them to where they needed to bring him for the operation. I couldn’t walk along side him anymore and my feet struggled to stop. As strongly as i could make my voice, I called out to Omar and told him I love him and he’ll be okay. He nodded to me as the doors swung close behind him.

I walked out the pre-op holding area and as soon as the doors closed behind me I  side stepped out the door way leaned my back heavily against the wall and took out my phone. I texted his parents , telling them they didn’t make it to Omar in time  they took him in for surgery. As i pushed the buttons to text , silent tears streamed freely and I listened to the tear droplets hit the tiled floors in the still quiet empty hallway.

If the disease doesn’t kill you, the waiting will. We tried to go about our daily lives, like normal. We were set up with an appointment for a neuro- surgeon. A different surgeon than the one the hubby had the first time around. But the appointment was a month away.

A month.

So for a month we had to sit with the news that the hubby’s tumor was back. He had a tumor inside his head. For the second time. Within four years and post treatment it grew back.

We were told the first time around that there is a 3-5 year window from regrowth. We were told if it didn’t happen within that window then it was likely not to happen for many many years like 15-20. We were so close.

For a month we had time to reflect on the first time. How the hubby was told he had a 50/50 chance of survival the first time and with that 50% there was a 50% chance of coming out with impairments.

We had a month to sit and ponder the risks, how they would be higher a second time around.

We we’re told to consult the surgeon first to determine if surgery, brain surgery for a resection , would be the best option or even a possibility. If it could be done or needed to be. Typically surgery would be done first before chemo and radiation so the body and system is stronger and not compromised and susceptible  to ill side affects from a lower immune system that treatment causes. So a surgeon would be our first step.

But, a month away.

Like i said, we tried to go about our lives. I continued to work my two jobs working 60 hour work weeks.  We lived our lives in constant denial. We tried to ignore the fact that we didn’t know what was going to happen. We didn’t know what options the hubby had. We didn’t know what kind of quality of life he would have to look forward too. We didn’t know how much time he had to look forward too…

We didn’t know.

We were just uncertain.

We tried to pretend we weren’t living this life of uncertainty for a month .

Sometimes it was easier because I was working so much. At my new job things are so fast paced and since I’m in charge of my clients, individuals with disabilities, there is no time to stop and think. It’s constant watch and attentiveness and then the day is over and done.

But my retail job? It’s physically taxing but it’s all physical. My mind is left to wander and I was in tears throughout my shifts.

There was no hiding the fact my fiance had a brain tumor no matter how hard we tried to forget or ignore it.

Things were high emotions for awhile. I had to cut my hours at my retail job. I couldn’t  handle being away.

God forbid if things took a turn with the hubby, I would have to live with that choice. I would have to live with the time lost. I would have to live with the fact that I was working while he was home alone.

And I’m not the one with the disease. He is for the most part alone. I’m all he got on a daily basis. And he is alone with his emotions and mortality in question. I couldn’t bare that.  Leaving him alone with all HE is going through and all his emotions and uncertainty. So i cut my hours at my retail job.

Things got better after i did that. I was home more. We spent quality time together.

We both were still upset and struggling. But together, it was easier to bare.

In one of his darkest moments he came to me and said with all he has been through in life ( he has been through many many things) he never felt broken. But now he feels broke. He said “I’m broken” and burst out in anger saying it’s not fair that he is going to have talks about options of life and quality of life. He should be having talks of getting married and buying a house not if he is going to live or die.

My soul hurt for him. For us.

So when the day finally came to meet with the surgeon it was bitter sweet. It was a relief to finally have a step out of uncertainty , closer to some solution or answer. Even if it was bad news, something concrete to wrap out heads around. We needed to be grounded. And this appointment with a surgeon was the first step to that.

Now, i did ask for our original surgeon  but  our referring doctor was persistent about going to the guy we were going to see. I didn’t worry too much because i knew the department. The hubby’s original surgeon is in the same department and his office was around the corner. So the original surgeon was accessible we decided it was okay to go with the flow, it was easier for insurance purposes.

We went in to met this new surgeon and immediately I bombarded him with questions and concerns. The hubby was severely resistant to surgery and would only do it if quality of life would be better. We were concerned about him living through another surgery. I could handle impairments but the hubby was not so sure about impairments. The surgeon talked us down saying death is a very rare occurrence and with the tumor location impairments is possible but mostly motor or speech so the hubby can still have a quality of life. So we opened up to the option of surgery again slightly but insisted we wanted the opinion of the original surgeon.  The surgeon than hit us that he would need two to three weeks to discuss the hubby’s case with  the tumor review board and together ( original surgeon included) they would come up with their recommendation and then call us to come in and present the options to us. Two to three weeks for them to meet. Then call us in for an appointment. So upward to a month for another consultation is basically what we were being told.

Another month of waiting.

The hubby lost it. He went off in the doctor office. I don’t think they ever had a patient curse at them before. But like the hubby said to the doctor everyone always says if you catch it early and treat it early that is best. But all we’re being told is to wait. It’s bullshit.

We basically left in an uproar.

They said they will call us after the review board met but we were pissed off and just needed to take a breather.

We were waiting for the elevator when the nurse assistant came running down the hallway screaming for us.

The original surgeon came in for the day and she spoke with him and is having him meet us.

Then, it all happened so fast.

He looked at all the medical files and the latest MRI and he was concerned.

The original surgeon actually remembered my hubby and his case but still went over ever single MRI he had back to the very first one pre first brain surgery. He was nervous.

He pulled us to the side to talk to us alone without the new surgeon and nurse and told us his personal advice and medical advice is the hubby cannot wait to have surgery. He told us the tumor came back. The first time it was stage three. They wont know what kind of tumor this one is until it is biopsied but he was worried that it came back in under four years after aggressive treatment and its likely its regrowth and re-occurrence of the same kind. He was concerned about advancement of the tumor since now the last MRI is from a month ago. He felt it was necessary to aggressively fight and asked the hubby to be admitted to the ER and have surgery right away and he would do the surgery himself.

He explicitly expressed he wanted to do emergency  surgery. Operate as soon as possible to remove the tumor that was the size of quater all around circumference  of a gumball ( which is significantly smaller than the first time which was the size or a handball with tentacle spread).

After some back and forth emotional breakdowns Omar agreed to have emergency surgery.

But red tape and all that. We ended up having to wait a day and an half.  The hubby had to obtain medical clearance , to make sure his body can withstand a major operation and they needed pre -surgical testing done and another MRI. So that same day Monday, April 27th the hubby had all the blood tests, ekg, screening and  complete work up for medical clearance. Then needed a day for test results to come back like the blood work.We did all the administrative work for pre admitting. The next day , Tuesday, the hubby had an intensive MRI done to get a current depiction of the tumor and to map out a course for surgery. They prepped his head shaving off circles and attaching senors all over.

Then Wednesday , April 29th 2015, at 530 in the morning the hubby and I entered the hospital for the hubby to have his second brain surgery, a full left frontal craniotomy.

The hubby, being prepped from the operating room, watching sports 530 in the morning.

The hubby, being prepped for the operating room, watching sports 530 in the morning.

We were rushed to triage and given a bed right away. It was all so surreal. The beeps of monitors just faded from memory and it was crushing all the walls I’ve built.

Worry and fear were paralyzing.

But, i stayed strong and positive for my love.

I stood by his side in the hospital and held his hand. He was in an extreme amount of pain from the seizure. He couldn’t move his legs much.

I sat patiently in a chair when they took him for a CT scan.

We goofed around and took pictures of him flipping off the IV , they pumped him full of anti-seizure medication,

Hours went by. Finally a neurologist came to see us. He told us the CT scan was promising, it didn’t show anything outstanding. He diagnosed Omar with epilepsy.

We were ushered out the ER with a prescription and an appointment with the neurologist.

The first thing that happened after pulling up in the driveway was Omar falling out of the car. He didn’t have control of his  legs.  He fell a few more times trying to make it to the room, even with me trying to support him.

I set him up and we dug out his cane and off i ran. I had to fill his prescription and it was Sunday.  I ended up going to three pharmacies before i found one that  had the medication.

It was one of the longest weeks of our lives. Tuesday was the appointment with neurologist. He wrote us scripts and arranged for an MRI that friday.  Friday we went for the MRI.

The following Tuesday we go for a follow up visit for the results of the MRI.

We had a fun morning. Went to the mall and went to Toys R Us. Omar got some action figures. We waited in the waiting room for awhile.  When we finally walked into the doctors office he was busily typing away and taking phone calls. He leaves the office to find a chair for me, there was only one in the office which Omar was sitting in.

After I was settle , he still was fidgeting around.

Finally he tells us to go back to the hospital for copies of the MRI. He started telling us his assistant is making appointments for us, an appointment for a surgeon .

I stop him and bluntly ask him why a surgeon and questioned him what he found on the MRI. I straight out ask him if Omar’s cancer is back, if he has tumor regrowth.

The doctor could barely look us in the face when he said yes, they found something.  He told us to consult the surgeon and the surgeon will decide a treatment plan, if surgery  is necessary  or first step. Or if chemo and radiation again then surgery. A surgeon will give their expert advice.

I held it together.

I held it together throughout the doctor visit and retrieval of records.  I held it together in the cab home.

When we came home, i shattered.

I cried. My soul cried.

And I’ve been crying on and off ever since.

My hubby, my love has a re-occurrence of his brain cancer.

And i feel so heartbroken this is happening to him again.

And angry.

So , very angry .

The hubby, for those of you that don’t know, is a Brain Cancer patient. Back in 2011 he had a seizure attack for the first time in his life that sent us to the hospital .While there he had an abnormal seizure, a seizure that would not stop nor respond with IV medication. With four nurses and a doctor practically sprawled across him, they told me they needed to medically induce a coma. It was then we found out he had a massive brain tumor and he under went a craniotomy four days later. 3 days before his 25th birthday we got the diagnosis of Olidenglioma, Stage 3 brain cancer. He underwent radiation and chemotherapy and since 2012 he has been in a stable condition with no active cancer.

The hubby was feeling sick recently, for some time. But, it was more so other parts of his body. He basically felt like he had arthritis. He was having really low stamina, couldnt walk much or far without tiring to the point where he felt like he was going to pass out. He was having more and more pains throughout his body and was unsteady.  My expert googling research skills , i discovered it’s a possibility that his joints were damaged from radiation and chemo, doesn’t happen often but it’s a slight chance. But, all these problems he was having were not necessarily in the radiation zone.  So it  was just weird. So, we walked into the doctors office to try to get some answers.

I’m the only person in the world that walks in for one appointment and leaves with six others.

So, that’s how i found myself working my crappy schedule and any day off i had was filled with running to these appointments and doing errands.

Then, something happened. I got called back from the really awesome job i interviewed for. I had to run to appointments for that …medical one day…fingerprinting another.. paperwork here…and then finally I was told I was hired . So i started working right away,middle of the week, March 11th.

I was already burnt out from not having a real day off for two weeks and then working two jobs on  those three days… basically working 15 hour days.  I was feeling it and asked to be taken off the schedule at my retail job for the upcoming Sunday. To have a day off.  Then i would be working my new job that upcoming week mon -fri in the mornings and afternoon then nights and weekend at my retail job. I wanted a day to regroup and prepare.

March  15th was the day that was supposed to be my day off. I worked closing the night before and planned to stay in bed for as long as i could. Off in the distance in my sleepy mind, I hear the hubby wake up and start his morning. I heard him leave the room and then come back. I heard him cleaning up. I heard him sit on the bed and listening to his ipod.

I was aware of him but i was still content and sleeping and snuggling in my million blankets. I sense him sit up on the bed and take his headphones off and heard him fumbling around for the remote control to the tv.  I snuggle harder in my blanket, just happy to be home and in bed with my love and was ready to drift back into a deep sleep.

Then i felt him jerk back and “fall” on me. Not hard. But sudden. It was brief and then i felt him sit back up. Then all of a sudden dropped back on me. I sleep mostly on my stomach with my face in my pillow.  I was like what the hell is this boy doing but then i didnt feel him move again so I was like aww I’m getting a cuddle.

Then i heard it. A sound I’ve only heard twice in my life and never thought I would hear again in my life.

A primal groaning sound that made me jerk my head out in panic.

Then i felt the hubby having convulsions.

I struggle with his weight and to push myself up off my stomach and all i see is the hubby convulsing and that guttural sound . I struggle to do all the things I’m supposed to do, hold his head and tilt his body to the side so he doesn’t choke on the saliva and blood.

Tears stream down my face as i count. His seizure was violent and lasted just over a minute. For a full few minutes after he struggled to regain regular breathing and clear his air ways from the saliva and blood . Crying, all i could do was hold his head and whisper reassurances to him.

He came out of the covulsions but was delusion. It was a full five minutes before he registered my voice at all.  He was laying in bed and tossing from side to side , sit up and fall back and repeat.  After five minutes he finally responded to me verbally and I immediately dressed myself with yesterdays outfit still on the chair.

All the while i keep talking to Omar trying to coax his out of his daze. He wasn’t aware of his surroundings or what happened.

I run to get my brother and tell him I need him to drive us to the hospital.

Tears running freely, i talk Omar through sitting up and I dressed him. Still, he wasn’t aware of what was going on.

It was 10:03 in the morning when Omar had a seizure attack.

The hubby was unsteady and barely able to move his legs. He was moving like walking through quick sand.  I got him into the car  at 10:35am and in the car he started to regain memory and understanding but was still not there. He didn’t know the month, the year. He didn’t know his birthday. It took him a long pause to remember who I was.

It wasn’t until we were at the hospital 10:50am that he started to regain normal brain functioning.  He knew me, the date, the year, his birthday. He had no recollection of the entire morning.

At the hospital we both broke down.

Omar only had a seizure before from the pressure of the tumor. Without a tumor , he wasn’t supposed to ever have one again.

But, March 15th 2015, he had the third seizure of his life.