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.
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.