Sisters…

Today I was hoping to post articles written by my sisters—their perspective is unique in that not only did I grow up with them, but they were both there for the surgery as well as after the surgery. I could write a whole post on my sisters. People often ask me what, if anything I have learned from this experience—this is a question that I have no great answer to—I do know that love has gotten me through this. Love and passion for medicine and their patients got me a diagnosis. Love from Amy and my cousin Pauline got me in touch with top notch neurosurgeons. Love from my wife kept me strong after the diagnosis. Love from Alice and my mom helped me through the hospital phase of the recovery. Love from my dad kept me looking forward. Love from Bill (my stepdad) has been vital to my recovery. Love from all my friends (including colleagues and college friends) has helped me integrate back in to society. Even an act as simple as holding a door open takes love- love and compassion for my situation. How does this relate to my sisters? I know that without them and their love I would not have had the strength to endure this. I admire them both, before all this happened I would have easily called them both my heroes. I strongly believe that stress and pressure can reveal a lot about a situation or a person: pressure has the ability to create something as destructive as a tornado and the ability to make something as beautiful as a diamond. The amount of stress this whole situation must have put on my sisters I can only imagine, but like beautiful diamonds they came to my side without hesitation. I asked them both if they could write something for the blog—again without hesitation they agreed. This is what they wrote:

Amy(my older sister):

I will never forget the day that I received the news about Chris’s tumor. I had missed several calls from Chris that day, and several from my mother. At the time, I was a mother of 2 kids under 2 years old, and a few months pregnant with our third. I’m sure any mother of toddlers or babies can attest to how hard it is to keep track of where your cell phone is, let alone answer it. When I saw all these missed calls from my family in succession, I remember worrying that something was wrong. I called my mom back, and she blurted out, “Chris has a brain tumor.” She continued on but to this day I still have no idea what she said after that first sentence. I started sobbing and wailing uncontrollably. I had never felt so devastated, scared, helpless, and sad before in my life.

As an Emergency Department doctor, I am used to delivering this type of news to families on a regular basis. This is probably the worst part of my job, but I have learned to distance myself and not get emotionally involved with every patient. It’s a matter of survival and in the best interest of my patients. I am compassionate, but cannot be truly empathetic, lest my emotions cloud my judgment at a crucial emergent moment for this patient, or for the next patient I see.

Despite all my experience with death and disease, there was nothing that could prepare me to receive that news about my brother. I had been lucky—no one in my immediate family had suffered serious illnesses. Until that moment, I thought I was a strong and stoic person. I have never felt as vulnerable and scared as I did that day.

I knew that it would be important to Chris that I be there before the surgery and immediately afterwards. I made arrangements to fly to Michigan the day before the surgery, and return the day after. I wanted to stay longer and be with Chris, but my daughters had never been separated from me, we had no childcare help, and my husband did not feel comfortable with my extended absence. My mother-in-law (or 2nd mother as I call her) was gracious enough to come to help us with the kids while I was away and Amir was working. Still, our first daughter is a “spirited” and extremely sensitive child. We were afraid that my extended absence would be too traumatizing for her. She had had bad childcare nanny experiences as an infant, and we did not want to potentiate her insecurities. I felt so incredibly guilty for not being able to stay with my brother longer after his surgery. I felt pulled in two different directions.

I remember on the car the ride to the hospital (we drove from Okemos where Chris lives, to Ann Arbor), I cried the whole way in the back seat and hoped that Chris did not see me. He seemed so strong and calm. It’s always hard though, to figure out exactly how Chris is feeling. I remember the pre-operative area and all the residents who were coming by to do their usual pre-op interviews before the attending checked in. I remember looking at the nurses and physicians taking care of us, knowing exactly how they perceived us, and wishing I could explain to them how it felt to be on the patient’s side.

The surgery day was the longest day I have experienced. We sat in the main lobby of the hospital, were given a website where we could check the status of the surgery, and Fleur carried a cell phone and would periodically receive updates on the surgery from a nurse in the operating room. Nobody expected Chris’s surgery to take as long as it did.

In the U of M surgery waiting room- because of the double vision I was experiencing I wore an eyepatch prior to the surgery
In the U of M surgery waiting room- because of the double vision I was experiencing I wore an eyepatch prior to the surgery

Finally, late that evening, we were told Chris’s surgery was over and we could see him in the recovery area. I don’t think any of us were prepared to see how Chris looked and how much pain he was suffering after the surgery. I will never forget the vivid imagery of Chris being extremely swollen from head to toe, moaning incoherently, and in obvious pain. Since his neurosurgeon was a pediatric neurosurgeon, the staff was mostly accustomed to treating children, not someone as big as my 6’2” brother. I will never forget that the first coherent words out of Chris’s mouth in the recovery area were “Amy…Amy…Amy” He kept moaning for my help. I had to hide and fight back my tears. I remember that Fleur was so understandably overwhelmed with the whole situation. Poor Fleur was 8 months pregnant, exhausted… and to see her husband this way must have really put her over the edge. She had to excuse herself to compose herself. Meanwhile the doctor side of me kicked in and I became annoyed that the nurses were giving my 6’2, 180 lb brother meds dosed for babies. 1 mg of morphine after a 12-hour brain surgery??!! You’ve got to be kidding me. I immediately requested a change in dosages and types of medication. My brother was in so much pain and vomiting despite the medications given so obviously they weren’t working. I knew I was being the typical difficult family member and the nurses were probably annoyed with me, but I really didn’t care. I wanted my brother in as little pain as possible. Chris was in excruciating pain. At my urging, the nurses called Chris’s neurosurgeon and his pain medication dosage was doubled and anti-emetics (nausea) changed completely. He seemed much more comfortable.

The morning of my flight home, I really felt that I needed to stay to be with Chris at least a few more days. He seemed to be in too much pain and needed me there. At one point, he grabbed my hand and said “Amy stay with me.” I really wanted to stay with him. I called my husband and even from the background noise and sound of chaos, I knew I was needed and had to return home. Amir said to me, “The girls really need you, they are going crazy.” I asked, “Can I stay an extra day or two?” Amir replied promptly, “No, you need to catch your flight. The girls need you.”

Amy and her family
Amy and her family

Even though Chis seemed obtunded post surgically, he must have heard this conversation because I will never forget, he pulled me to him and mumbled, “Amy, you have to go home. The girls need you.” A few hours earlier he was pleading for me not to leave. I felt so touched and heartbroken at the same time. My brother, who had just undergone brain surgery, was still trying to be considerate towards my family and me. I truly do not know a single soul as kind and genuine as my brother’s. That moment was so telling about Chris’s character and heart. It still brings me to tears if I let myself think about it.

Recovery

Recovery has been slow but steady. I don’t think any of us expected Chris to have as many deficits as he has, but after speaking to my good friend who is a neurosurgeon (and has been a godsend to our family and me throughout this whole ordeal—Dave and Jeanie Jho we are forever indebted to you), we have realized that this is all normal, and Chris has in fact improved and is progressing as expected. Even though it is subtle, his voice has changed. It is more monotone and has different inflections. Because of this, it makes me sad to talk to him on the phone. A stranger may not notice, but as his sister any difference seems large to me. His speech does seem to be improving, even though I’d have to say this is the area in which improvement is slowest. Physically, he has come so far. Immediately post surgery, he could not even stand without assistance, could not even use his bedside urinal without help. Now he can work out, walk sideways, and even play Ping-Pong. He still struggles with balance and his gait is not like it used to be, but he is improving every day, and I am extremely proud of him and deeply admire him. I have no doubt he will continue to improve and will recover fully, with just the physical scar and a stronger spirit left visible when this is all over.

 

Alice (my younger sister):

There are no words to explain the whirlwind of emotions that one goes through during a time like this. Hope, fear, sadness, uncertainty, those are just a few. All I knew was that I wanted my big brother to be get better and for the tumor to be benign.

I arrived in Michigan a day before the surgery. The surgeon had expected the procedure to take between 10-12 hours, which actually turned out to be 16 hours. I really thought the worst part would be the waiting period. Waiting for 16 hours to know if Chris was going to be okay, and to know what kind of tumor he had. Don’t get me wrong; it was a horrible feeling, having a knot in your stomach for 16 hours straight. But the harder part, in my opinion, came later when I realized the effects a benign brain tumor could have and how much my brother would have to go through to recover.

Alice and our baby
Alice and our baby

After 16 hours, I remember going through just a moment of hope and relief when the doctor came out to the waiting room and told us that the tumor was benign and that my brother would be okay. That feeling quickly went away when we were allowed to see Chris. I slowly walked up to his bed in the recovery room; he was on what looked like the tiniest bed, laying on his side in a fetal position. As he slowly tried to turn to his back, I lost all control I thought I had over my emotions. I have never seen my brother like this: he didn’t look like himself, his entire face was extremely swollen from being in surgery, and he was in so much pain and agony. All I could do was cry.

When they moved Chris to the ICU I really didn’t know what to do, I felt helpless. My mom, sister and Fleur were all over the staff. With their medical backgrounds, they knew exactly what to do for Chris. My mom would rub my brothers legs, making sure no blood clots would form, that he was getting the medications he needed, that he was getting enough fluids, and making sure the wounds weren’t infected. With no medical background, I tried to help as much as I could, which didn’t seem like much. I just sat by my Chris’s bed awaiting any instructions from him or my family. At night when my brother would wake up, he would never really ask for much, many times he would just hold out his hand for mine, that was the only comfort I could offer him.

Laughter, it was the nicest sound I could hear from Chris after the surgery. We tried to joke around together, the way we used to when we were younger. My brother still had double vision after surgery so he enjoyed listening to his iPad. At night when he couldn’t sleep he would ask me to play one of his favorite comedians and we would both just listen and laugh together. Because my sister had to leave to take care of her kids, I would always try to record videos of my brother so she knew he was doing okay. I always tried to get videos of him laughing, in hopes that it would bring her comfort as it did for me. I know it was difficult for her not to be there with him.

To some people, recovering from a surgery to doesn’t seem like a big deal. Usually it entails a few months of physical therapy, and sometimes less. Most times you will make a full recovery as long as you do what your physical therapist says. This was definitely not the case. What my brother has been going through for the past year and few months has required much patience, diligence and self-motivation, and he has had to maintain all this while knowing that he still may not make a full recovery. The first time the physical and occupational therapist came to Chris’s room it saddened me to see my brother struggle to do basic things—walking, sitting, and standing– that most people don’t think twice about. I could see the pain and frustration my brother had every time he attempted to do something that was once so easy for him. However, this frustration didn’t stop him from continuing to work hard. If anything, it seemed like my brother turned this frustration into motivation, motivation to improve enough to leave the hospital and be with his family.

 

 

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