Yesterday, Tuesday, was Mom's first day in the NICU. They determined that she's allergic to morphine which explains why she was acting so bizarre in the recovery room. She called it the worst place on Earth and told us it was filthy, that she could see lint and dust all over. She was hallucinating. We also know this because she called me good-looking. In the NICU they switched the morphine for something else and gave her a diabetic diet to help with her sugar. She was annoyed that we were not there earlier but didn't have the strength to say much. She dozed off and by the time my sisters left she was sleeping.

Just so you know, the NICU is in the 4th floor of the main building. No visitors are allowed between 6-8 both a.m. and p.m. And no more than 3 visitors at a time in the room but other than that there are no rules. It is not a comfortable place by any means and we discourage visitors because of Mom's weakened condition. If you do come, however, Mom will like to see you but please keep it short. We trust that today they'll move her to a private room like she had before, as soon as her sodium levels are stabilized.

Mom had a very hard time in the recuperating room. She was there until 8 p.m. on Monday, waiting for a room to open up in the Neurosurgery Intensive Care floor (NICU), also on the 4th floor where she had previously been.

When Christy and Lex went in, they met Dr. Jekyll. She was wonderful and in good spirits and apologized to them profusely for being bossy and demanding. This was sometime around 4 p.m. I guess. About an hour and a half later they allowed Susana and me to go in, and we met Mr. Hyde. Her mouth was very dry and when I tried to get her not to talk because it would make it worse she not only refused but said she had to talk and I was the one being bossy. Mom's mood was very black and complained that she was in the world's worst place and would not have made it were it not for the one angel there who stood by her the whole time, nurse Michael. She said the worst part was a patient who was deaf. When the staff tried to get him to do something like wiggle his toes, he would yell at the top of his voice that he did not understand. Mom yelled back, "get him a pen and pad." The staff laughed but could not find a pen and pad. They have thousands of dollars worth of equipment and not one pen and pad around with which to write simple instructions to a deaf person. Something to think about. Disabled people need full access in hospitals too.

Nurse Michael, a 20-year veteran of the profession, was amazing. His professionalism and caring were top-notch. I suspect you don't get to be a recovery room nurse unless you're very good at it. But Michael and the whole staff down there had their hands full with a full ward because of a shortage of rooms in other floors. It was a domino effect and they were doing the best they could.

We went back to the waiting room and about an hour later Michael came out to give us a report. "I hammered her," he said. And we all laughed. Michael said that she was sleeping and would probably sleep for the rest of the night. He warned us that trying to spend the night (which none of us wanted to do,) would be pointless. Mom would be drugged and the room would be brightly lit and with lots of action during the night. Anyone staying there other than the patient was guaranteed a sleepless experience. So after deliberating our next step, we decided to take up Vicki's suggestion to dine at wonderful little Italian place nearby, Buon Appetito. Paul joined us. It was every bit as good as she said it would be and we had a great time not only because of the delicious food but because of Justino (Tino) Cantú, a guitar player that looked like he was born about the time the guitar was invented. He serenaded us with beautiful music and funny banter.

We all got some rest last night. I cooked breakfast for Christy, Lex and Susana and then we parted ways. Christy and Alexie went back home and Susana and I headed for the hospital.

Arriving at the NICU bed 2 we found a very groggy and crabby Mom. I think she was upset that none of us had been there for awhile but we needed to get a way for a bit or we would have been useless too. So no apologies.  We helped her get better situated in her bed and eat a little food. The nurse, Ruth, also went to Presbyterian Pan American School in Kingsville but about 20 years after I did. That's a big coincidence because the school is rather small. Ruth told us that Mom had a bad night last night, fitful and restless. I went down and got her some sherbet and after taking a couple of sips of that she dozed off.

Susy and Julia were here this morning and just now left after briefly going in to see Mom. According to Ruth, the plan is for Mom to have another MRI today and then hopefully move her back to a private room in the same section where she was prior to the surgery.

3:25 p.m. Mom is now in the recovery area. Only two of us were allowed to go in, and only for one visit. Christy and Lex got the job since they're leaving tomorrow.

Dr. Zhang came to see us around 1:15 p.m. He said surgery went well. The tumor was indeed right next to the part of the brain that controls motor skills on the right side, specifically her arm, eye and hand. So he took out only 70% of the tumor.

The tumor is indeed cancerous. The type is glioblastoma. You can read more here:

http://www.abta.org/understanding-brain-tumors/types-of-tumors/glioblastoma.html

At 2:20 Mom still was in the recovery room. She'll soon be brought to the ICU where she'll be for a couple of days. The doctor said he expects her to stay here for a further five days during which time we'll know a lot more about the tumor, her condition and prognosis. There are a LOT of unknowns so don't ask too many questions. We just don't know much though at least we know more than we did yesterday. That's sort of how things will be, one day at a time.



As I wrote earlier, our lives have all changed. Here's the letter to Hui. You can see how Mom's hand-writing has changed but her heart hasn't. Always remember that. 







Below is another one of Mom's nurses. They've all been great.

12:15 p.m.

Nurse Tamara came out to talk with us about an hour ago.  She actually had come earlier but she asked for the "Ramón" family. I thought to ask but didn't. So she came out again and told us that surgery began at around 9:15 a.m., after a long prep. They had taken Mom downstairs at 6:30 a.m.

Nurse Tamara said that everything was going fine and that she was feisty. Tamara said she liked Mom a lot. The surgeons had already tapped into the tumor and a sample had been sent for biopsy. Meanwhile they're taking more tumor out and preparing the equipment that is used to align their instruments once they know exactly how much tumor they can remove.

Once they close it will take another hour to hour and a half.

Coqui and I arrived at the hospital around 5:20 a.m. Christy, Alexie, Vicki, Susana and Ron were already here.

We collected Mom's things and prepared to be able to leave with Mom. We knew that Mom would not come back to this room since she'll have to spend a couple of days in ICU first. And then she'll be given some other room

Mom chatted about everything and nothing, sort of out of it. Between the tumor and the medicines she's taking she was loopier than the Beltway/Hwy. 10 exchange. We all felt very calm, however. I know she'll come out of surgery fine. I'm not worried about that. I don't think any of us around here are. The question is what will happen after. There's life before surgery and after surgery. This is the beginning of a whole new chapter in all of our lives.

Beauford Wells, Paul's dad and a retired anesthesiologist arrived right before they came to get Mom. He used to work at this hospital long ago. It's good to have someone around that can understand medical lingo and the workings of a hospital. Well, Vicki does that too so we're covered one way or another.


We've had fun keeping things light around Mom. I posted the sign you see here on day 2 because the nurses called her "troublemaker" in a kind, teasing way. They actually like her a lot. She's won many friends. Below you see Hui, her favorite nurse. They've all been great but Hui in particular went above and beyond. Mom wrote a letter to him that was posted in a bulletin board at the entrance to the floor, where patients can acknowledge good service. The bulletin board for bad service notes is somewhere in the basement I think. I doubt anyone uses it, however. The staff here has really been outstanding.




We actually took photos of most of her nurses but there's not enough room here for them. We have uploaded them to her electronic photo frame that Vicki bought her so hopefully you'll get a chance to see that at some point.

Jonathan Hart, aka J.J., also was here. It's always great to see the Harts around. It's a huge morale booster. Anyway, J.J. and some of us have been walking with Mom, keeping her as fit as possible. 

I found out the hard way that Mom can't handle more than light thoughts. She prefers to do most of the talking. So what's new, right? But now she really prefers to do that. She has a hard time following conversations. So keep the conversation light.














 Vicki with the help of Christy and others knit Mom a cap. 

Mom had a Fudici stealth protocol mri, generically known as a functional mri. This test lets the surgeon know what parts of her brain control certain functions like speaking, moving the tongue, raising the arm, etc. It was conducted, according to Mom, by an German doctor that inspired great confidence in her. In addition to removing the tumor, I've asked them to install a button directly wired to the part that complains. It's a simple on/off switch which I know will come in handy.

On Saturday Mom had her hair cut very short and on Sunday the doctors placed the anchor points that will hold the device that is used to keep the surgical instruments on the tumor regardless of any head movement.You can see them in this photo.Coqui thought she could charge her iPhone on one of those. The photo was taken Sunday evening, on the eve of the big day.

Mom told us she could not believe the amount of love and support that she has gotten from so many corners; people have sort of spread the word and everybody knows her situation. It's blown her away so thanks to all of you.

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Andrea Higuita is an oper from Colombia. She met Mom at Lone Star College where Mom was teaching ESL.  Over the past few months Andrea and Mom have gotten very close. It was Andrea who first talked with Mom on the day Mom went to the ER. When Andrea heard Mom tell her about her symptoms she quickly urged Mom to call Paul immediately which she did. And that's what got the ball rolling. We found out later Mom planned to drive herself to the ER!

Eric and Christina also came down from Dallas. They've recently bought a house and are planning to wed next year. 

Ibis and Joan Arrascaeta and Joan's mother, Teresa, are our Cuban friends that immigrated from Cuba via Spain about a year ago. They've adapted extremely well and have become very good friends of all of us.

Had to take Tessie in last week for a check up with her vet, Dr. Caballero. I told him about Mom's situation. He told me that his mother had brain surgery about 10 years ago in Honduras and she's alive and well. He also showed me the little angel that Mom gave him for Christmas, something that touched him very much. 

Friday

This was done a couple of days ago.

It's Thursday. Yesterday reinforcements arrived: Christy and Alexie, Juan and Susana. Wow, what a relief it is to have family around. Useful family, that is. The kind that will wash, iron, and cook for me. Actually by my own definition that would make my entire family useless so I better come up with a new definition. Family, blood-related or not, are those folks that will be there when you need them, no questions asked. They will catch your fall, help you clean up and get back on your feet. And won't require a co-pay nor will you need to meet a deductible. You will, however, have to give them a hug or something.

I admire my family. I am very, very lucky to know that there are such talented, creative people in it. And all have made it past the sixth grade except me. That's a good thing because I often need adult supervision.

 I am more and more optimistic about the situation. I am convinced Mom will pull out of this. I don't think the tumor is the end for her though it does mean that life won't ever be quite the same for her or us. We don't know what that means and we won't know for quite a long time. All we know is that surgery is on Monday, tentatively. We know that she'll  be in the ICU for a couple of days and then a few more days as guest of the Methodist Hilton before she can go home. At some point towards the end of next week we should have the final pathology report and only then will we know what we're dealing with. It will be much longer than that before we know what Mom's true condition is in the aftermath of all this. The dust will take a long time to settle, kind of like in my office.

I warn you that I'll need to spend some time with Mom alone. If I ask you to step out or not come, please don't take it personally. I need to get ready to take over her administrative affairs and she and I need to spend time doing this with no interruptions. Mom is getting tired as the days go by and her strength is sapped after receiving visitors all day. Her ability to speak and to reason are also diminishing so time is of the essence.

Love you all.

This just in: Dr. Zhang wants to do a "special scan" on Friday. He wants to look as carefully as he can at the tumor before going in. The tumor is right on the edge of the part of the brain that handles motor skills and movement on the right side of the body. Therefore, he wants to do everything he can to avoid harming Mom in any way. Surgery is planned now for Monday.

Yesterday we talked with the Neuro Oncologist, Dr. New, a rather ironic name. As it turns out, Dr. New is rather old. A soft-spoken woman that looked as if she arrived with the Mayflower, she's very fragile looking. Her skin is so thin I could see her hand bones. We heard that on one occasion a patient she was talking with sneezed and blew her across the hall into a storage closet.

Dr. New asked a lot of questions, let Mom go into all kinds of details about her condition and then said that most likely this is a type of tumor called Glioma. Here's what the Mayo Clinic writes about it:

Glioma is the medical term for a tumor that begins in the brain or spinal cord. Gliomas are the most common form of primary brain tumor. Treatment options depend on the specific type, size and location of the glioma. Outcomes can vary widely, even among people with similar gliomas.

Dr. New stayed a while and ended her visit by saying they had treatments for all types of brain tumor. In Mom's case, there will likely be six weeks of daily radiation therapy which is given on an out-patient basis. This will be followed by oral chemo. I think she said three months of that.

We also spoke to other people including a friend who is a radioology oncologist there at Methodist. He said this is survivable. I feel much better, partly because the news are positive given the circumstances and partly because I'm also learning to deal with my feelings about all this.

Love you all.

Mom had a body scan Saturday morning. The preliminary results indicate that there are no cancer cells elsewhere. However, she's having a Petscan probably today which is a test designed specifically to search fo cancerous cells. If none are found she will most likely have surgery soon, perhaps towards the end of this week. It'll definitely be after Wednesday because they need to get the Plavix out of her body.

Mom is doing well and is in good spirits. She had a lot of visitors this weekend. Chris and Lauren, David and his girlfriend, Ron. And of course Vicki and Paul. Vicki has been there every day, all day. Susana, Christy and Alexie are expected to arrive Wednesday.

We had our traditional Crepe Breakfast Sunday but this time at the hospital. We generally invite Mom and we all eat in our pijamas at home. So Coqui and I showed up at the hospital in ours. It was an interesting experience walking through the hospital in our jammies and robes, hauling a suitcase and a large bag full of food condiments and utensils. We fit right in with the downtown hobo crowd so no one paid much attention.

I strongly suggest that you come to see Grammy if you can before her surgery. Right now she's lucid, conscious and in good spirits. Life after surgery, however, is a complete unknown. The tumor is right on the edge of where motor skills are controlled so there is a possibility that that part may be affected. We don't know if she'll be able to speak afterwards or just how conscious she'll be.

Remember that Mom's house is available as is ours so housing and transportation are not a problem if you're coming from out of town.

All is quiet in the Western Front. Mom had a full scan yesterday but we haven't heard the results yet. If cancer is found elsewhere then they will be able to do a biopsy without having to do brain surgery just yet. That's the good part. The bad part is that it would confirm metastasis.

Ron Jones came to visit, as did Nick and Roya. And as we were leaving Paul's parents arrived too. Vicki had been there most of the day as she has since Mom was admitted. There was so much hugging and kissing and shaking hands going around that Mom sort of got lost in the melee. We almost forgot why we were there. Oh, mom, yes that's right. There you are. How are you feeling dear?

Mom's actually feeling better. I think here spirits are up but she misses her home very much. We have to do something about that.

I'm trying very hard to be optimistic but last night when I went to her house to feed her entourage I was hit with another wave of sadness. Mom just had her kitchen remodeled with granite tops. It looks fabulous thanks to Coqui's design. She got to use it all of about a week.

Mom's getting to know her nurses well and she raves about the care she's getting. They have all been very kind with her. Lack of care or attention is definitely not a problem here.

If you think about it, send her a video of you or photos. She does have her iPad and she's actually using it. I think it would help her mood to see your faces not just hear your voices. And if you can, come. Methodist Hospital on Fannin Street in the Medical Center. Room 429, the Angry Bear Den. She'll have to tell you why we're calling it that.

Week One - Mom is in the Hospital

It’s 5:30 a.m.and I couldn’t sleep anymore. I’m very sad.

Today is Saturday, July 20th, 2013. On Thursday afternoon just as I was entering the gym I got a call from my mother asking me to take her to the hospital. From the tone in her voice I knew it was bad. 

She reported that a couple of weeks ago she noticed that her handwriting wasn’t the same. Three days ago she noticed that she was having trouble being able to speak. She would think of a word an a different word would come out. The doctor said that happens to him all the time, and to me too by the way, but not to her.

Thursday she couldn’t close her right eye-lid and her speech was slightly slurred. My brother in law, Paul, an internist who is also her primary physician and an excellent diagnostician, told her to get to the hospital right away. Fortunately, I was in the same shopping center and wound up driving to her house right behind her. I tried to get her to stop and let me take her home. At a red light I jumped from my car dressed in my gym clothes, bright yellow shirt, blue shorts and red shoes. I know I looked like the Venezuelan flag as I ran to her car but she waved me off.

Paul had told us to go Methodist downtown, an excellent facility. Though the wait was a bit long I’m glad we listened to Paul. Soon it would be evident that we had made the right choice.

We got to the ER and while in the waiting room she had a seizure, something she’s never had before. I had just stood up to get a snack from a vending machine 10 feet away. I turned back and saw Mom staggering to me with a panic-stricken face, unable to speak and tears rolling down her eyes. I grabbed her and yelled for the nurses.

After a few hours a number of tests were done. She was seen by both the ER doctor and a resident who worked for a neurosurgeon. The ER doctor had called him to come down because a catscan was done that revealed a suspicious mass in her right lobe. 

She was admitted and early Friday an MRI was done. Finally, late afternoon the attending physician came and so did Paul. For Paul to show up like that in the middle of his work day which is very hectic told me that this was serious. The attending turned out to be Dr. Y. Jonathan Zhang. Paul recognized him as a world-renown micro neurosurgeon but Dr. Zhang's business card is very modest. All it says is that he's an MD and works in the department of neurosurgery. There's not long list of initials after his name nor anything else that would reveal the stature of this man in the medical field.

Dr. Zhang is what central casting would come up with as either the premier physician or a lunatic tyrant out to conquer the world. Fortunately he chose the former. There is no middle ground with him. When his residents had checked Mom the day earlier, we go the impression from the way they talked about him that Dr. Zhang was some sort of celebrity which was later confirmed by Paul. But when he showed up he came alone, no retinue, no bells and incense heralding his arrival. A slim man of about five feet nine, his features spoke of an unusual man with deep, penetrating eyes that seemed to want to be part oriental, part occidental and which could open your soul as efficiently as he could open your body with his superbly-trained hands; large, round skull particularly in the back which speaks of intelligence, receding hairline with short hair and small but sharply bent ears pointing forward like radar dishes. Those are the ears of someone not interested in hearing everything, just specifically what he's looking for. The same features could be those of of a mad professor or a ruthless dictator. This is not a man that settles for a middling life. I don't know anything at all about him beyond what Paul told us but it would not surprise me to hear that he's a master black belt or an avid athlete or champion chess player in his spare time.

After listening to Mom’s detailed story of her medical issues and the symptoms that took her to the hospital, Dr. Zhang read the verdict from the MRI in a soft, clear and firm tone and with words that left little room for doubt: 95% certain it’s a tumor though no way to know what kind. It is a tumor inside the brain, in a delicate part of the right lobe. It can be a tumor that grew there or came from elsewhere. They will do a full scan to see if there is cancer anywhere else. If there is, then they’ll know for certain that the tumor is malignant. If not, then it is highly likely it grew there and based on his experience Dr. Zhang feels that the odds are that it’s malignant. Because it’s in the brain, doing a biopsy and doing brain surgery is the same thing so surgery is required.

Before they can do surgery they have to get rid of Plavix, a blood-thinner. Mom refused to get on Cumedin. For this to happen her body has to be flushed so to speak and that will take a few days so she’s not leaving the hospital anytime soon. After surgery they’ll know what they are dealing with and what sort of treatment will be needed. Dr. Zhang will ask a neuro oncologist to come see Mom this weekend if she hasn’t done so already.

Because the tumor is in a very delicate part of the brain Dr. Zhang said that he can’t be too aggressive during surgery. Paul thinks that there’s a strong likelihood Mom won’t be able to speak after surgery and maybe not be able to write. Fortunately Mom was born a leftie and is ambidextrous.

So life as we know it has just changed. Ironically, I’ve been taking care of Mom’s pets and her house for a month because she was out in California with my brother. She must have had some sort of inkling that she needed to go there for awhile. I remember when she decided to go. It was rather spontaneous and it seemed a bit extreme that she wanted to go for a month. Now I know why. I think she intuitively felt she had to go. She came back feeling very nostalgic and sad about San Diego. It brought back a lot of memories for her. That’s where she got divorced and where she met the two men she later married, Dick and Howard. In a way she may have gone there to say good-bye.

Now I’ll be taking care of her house and pets again except perhaps this time permanently. Even if the tumor is removed I really don’t think life will ever be the same again for any of us. And I’m feeling very, very sad. I miss her already.