Chapter 11

Settling in at home, the wonderful phone calls, cards, prayers and visits left me in awe of my family and friends. Mom and Dad had already been through a lot and without them, I don’t know how I could have maintained a positive attitude.

Friends, new and long-time, gave me so much support that I was amazed at how it could be that I knew so many dear and loving people? Ancillary to that, I wondered if that meant that I was a real pain in the neck, since it seems that annoying people have nice friends and nice people have annoying ones. I was even getting prayers and support from people in our church who did not know me.

My oldest and dearest friends decided to throw a party for me at our house. It was a lot of fun. We used to have two parties a year at our house: an Oktoberfest (complete with live music) and a Regifting party after the New Year.  That year, we had an Oktoberfest after all.  Everyone came, even friends I hadn’t seen in years!

It was wonderful! Everyone brought something and we laughed and talked. I felt so supported by their visit. We normally have an Oktoberfest that time of year and the attendees can get to be over thirty. One year, I think that we had fifty people. Live music,awkward chicken dancing, life was good.

We also had visits and calls from family and friends all over.

My aunt is a medical doctor and she was very helpful in listening to my progress. She had first called when I was in the hospital back in August and we kept up on a regular basis. I enjoyed and still enjoy her calls.

Friends from work, friends from church, friends from the senior center, friends everywhere either came by or sent cards.

Becoming sick isn’t anything that I would wish for anyone. But in many ways, I was finding God’s blessings every day. I’d already thought that every day was a gift but how much more so to find ways in which God shows His love and shows us how to share it with others?

I learned a lot from my friends here and those who lived far away. Several friends and new acquaintances would tell me of someone they knew who had had an acoustic neuroma and they shared their experiences.

I learned that the tingling on the tongue or burnt tongue feeling was a sign of a large tumor. In fact, I don’t think about this much anymore but it was fairly intense.

I learned that the barometer could affect how stable or dizzy I would be. Rainy days would be particularly bad for dizzy spells.

And I learned that everyone who shared a family story told of how the family member recovered well and had a happy life afterward.

All of this was encouraging.

Spiritually, I’d learned about the Rosary Novena. This is a prayer of 27 days of saying the rosary to the Blessed Mother to ask her in petition, followed by 27 days of saying the rosary thanking the Blessed Mother for her help, whether what was requested was received or not.

By this time, I had heard from the surgeon’s office that my surgery date was the week before Thanksgiving! I was disappointed as I had hoped for surgery in October. This was a whole month later!

I started praying the Rosary Novena to request an earlier date for my surgery, and for the surgery to go well and to keep my parents healthy and happy.

This helped to encourage me to think positively and it also was wonderful for my prayer life. I’d mentioned that I was saying a Rosary Novena when I met with my pastor to thank him for visiting me in the hospital. Father Peter suggested that I keep a prayer journal to write down what I was thinking and feeling during prayer. It was when I was meeting with him that I asked him if it was wrong to pray to God for a parking space. I have done that and I was never sure if it was okay.

He laughed and laughed at that. He nodded, and I breathed a sigh of relief.

He did find books for me in the library that would help with my prayer and I thanked him once again.

The prayer journal was an excellent companion to my prayer. I’ve gone back to re-read what I’ve written and some of it is very good.

The most important take away I had was that God wants us to pray, but we don’t always open ourselves to Him. When we do feel as though we should pray, that’s when we really should, as we are feeling God making His presence and love known to us. God wants us to be close to Him and we should want it too.

Mom was a member of a book group with the Church. This group met weekly for a few hours. They were reading a book about women in the Old Testament. Each book group member would be responsible for a chapter in the book. Some of the women in the group really researched and prepared for the discussion and it could be very engaging. I was glad to join for the discussions and friendships that I found there.

She also led a monthly book club at the senior center. This was more relaxed. We read fun series, such as Maisie Dobbs, who has a surprising following of war veterans along with readers in general who enjoy detective stories. Her grandfather had suffered from shell shock after the war and she takes care to write about what veterans had to go through when they came home.

Book club at the senior center was a lot less serious and a lot more lively. We all seemed to like detective stories best – Maisie Dobbs being a favorite. I’d stumbled across the No. ! Ladies’ Detective Series and those were fun as well, but paled in comparison to the stories set out by Jacqueline Winspear.

Chapter 10

When I finally met Dr. Barker, he was a solemn, but kind man. Both he and Dr. McKenna were thoughtful, but I could see that Dr. McKenna’s specialization allowed him to have more patients who would recover whereas Dr. Barker worked in oncology in the Brain Tumor center. I felt sorry that he probably had a difficult job, giving patients and their families news that would be difficult to hear.

He told me that the exhaustion was because the dosage of the decadron was too high.

We talked about next steps and he talked about risks. I listened and told him that I understood. I’d wanted Mom and Dad to hear what he had to say also, so they were with me when I met him.

In the end, he told me that it may be six to eight weeks until I could have the surgery.

I was shocked! That seemed like an age. He sent in his secretary who came to take information to schedule the surgery. The reason why it would be so difficult is that the surgery required two major surgeons, one special operating room and 3 surgical teams, as the surgery would take about 12 hours.

As we left, the nurse had sent a prescription to wean me off of the decadron completely so that there would be no traces of it during the surgery.

Coming out of the doctor’s office, I had instructions to take care to get well before the surgery. I was cleared for using the treadmill, but that I should take it easy. The stronger I would get, the better I would do during and after surgery.

The doctor’s secretary was going to call in a week with a surgery date. I was looking forward to having it done and over with.

I started carefully on the treadmill, walking at a slow two-mile-per-hour pace, first for twenty minutes. I worked up gradually to forty minutes per day and carefully increased the speed.

As I walked more, I also started to follow up with beginner’s yoga. This was great as it seemed to alleviate some of the tingling and numbness on my right.

I also was aware that I would be more susceptible to severe headaches and dizziness as I was weaning off the medication. With that in mind, I talked to my folks that it might be a good time to drive to Buffalo to see my brother and my nephew while I still could. We agreed and we made arrangements to stay somewhere where we could also make our own meals and could also visit with friends and family.

We had so many people to see, we were booked all of the time. We saw my brother and nephew at least twice, and we saw friends whom we’ve known for over 40 years and some that we’ve known for less time. When we arrived, we’d arranged to meet up with Dolly as well as our friends Irene, Elsie, Delores and Herb, Ray and Hilde, Rose, Dr. Cushing and of course my brother and my nephew.

By this time, my eating patterns were so changed, it was hard to find foods that I could eat. What would happen is that my entire right side would get the same numbness and tingling if I ate things on the “surprise! you can’t eat this anymore” food list. It was easier to list out the foods that I could eat than to identify those that I could not.

This meant that eating out was a challenge: try to go to inexpensive restaurants and order a meal that has no dairy, wheat, sugar, citrus, carrots, … Basically, I could have oatmeal with maple syrup, apple juice, poultry, fish, potatoes, spinach and I think that is about the whole list.

The other problem with my condition is that I would need to have apple juice or something that I could eat if I started feeling bad. When I was dizzy, headachy or stiff yet tingly, a small juice box could do a lot of good.  The feeling could be that I was weak or it could feel as though my right arm, all the way up to my shoulder, was getting stiff and tingly as though it was falling asleep.

We enjoyed our time in Buffalo and we had a good drive back home.

Chapter 9

I’d mentioned earlier that I would meet with Dr. Barker and Dr. McKenna mid September. The goal was to check in to see how I was doing and to talk about scheduling the surgery.

By the time I went to see Dr. Barker, I was barely able to stay awake. The medication affected my ability to get a full night’s sleep so much that one of the nurses who took my pulse and checked me out told me that I was suffering from exhaustion.

I knew that I was tired but I was surprised to be diagnosed with exhaustion.

I also had figured out by then that some of the tingling and numbness improved by making changes to diet.

The first food category to be taken off the list was dairy. I love dairy products and I don’t recall how I made the connection, but at some point, I decided to omit those foods to see what happened.

Amazingly, numbness and tingling in my face and in my arm improved!

There wasn’t much that I could change about how the whole sole of my foot tingled; even the toes tingled. My fingers tingled all of the time, although sometimes measurably less.

This improvement gave me the idea that my condition was reacting to different foods.

I mentioned this to the nurse and she looked at me as if I were crazy. I wanted to say “Take a number! There’s a long line of people who think that I am one fry short of a Happy Meal!”

However, discretion is the better part of valor. I needed the operation and it would be a good idea to keep it quiet in the peanut gallery.

I’d been told that for the surgery, the doctors would need some belly fat to apply to the spinal column. It’s hard to believe now, but at the time, I ate so little that finding fat might be a problem, depending on how much was needed. Instantly, I had friends offering to donate their own. I think the list was as large as 14 potential donors.

The more mundane task to take care of was to coordinate the paperwork for short term disability.  I’d filled the paperwork out as soon as it arrived and faxed it to the social worker and it took weeks before it was approved.  It was a relief that I’d also purchase long term disability insurance. I had purchased LTD insurance for years and I remembered that during enrollment that yoar, I had considered not buying it! I am glad that I did, as I needed it later.

Chapter 8

I’d been home for only days and there was trouble as I’d only packed clothing for a weekend. All of my clothes were in Westchester county, NY!

My folks and I decided to take a trip out there to get my clothes, but also to collect my belongings as it was not my house. We did this about two weeks after coming home from the hospital.

Mom drove to Danbury, Connecticut. She and Dad had never been to the house, so I really had to drive the last bit of the way. We arrived at the hotel where we would stay and unpacked. Then I sat behind the wheel and I felt very dizzy.

“Oh, this is bad,” I said.

I waited for about fifteen minutes, until I felt less wobbly. I wasn’t feeling as well as I should have, being behind the wheel, but we were only a half hour away from our destination and we arrived without any problems.

Loading up the car and clearing out the house was another thing entirely. I had a whole year’s worth of clothing and other items as this had been where I’d lived for a good eighteen months.

After about an hour and a half, I was getting a headache and was dizzy. I had to lie down for about fifteen minutes to feel better.

Packing the car up was horrendous! We had a difficult time fitting everything into my parents’ car, but eventually we did it.

At the end, Dad added a little humor by saying that he thought that I could fit more clothes in the trunk. Meaning that if there was one more thing to put in the trunk, it would never close!

We cleaned up the house, locked the doors and left for the hotel.

That evening, we went out for a nice dinner. I don’t remember for certain, but it could have been Chili’s. I didn’t know what I wanted and Mom suggested that I order a steak and mashed potatoes. Both Mom and Dad don’t remember this so again, this may be a result of the swelling.

Dad says that he doesn’t remember that, but that the food was okay and that the restaurant wasn’t far from the hotel. Mom insists that she didn’t order for me, so I will leave it at that.

We had a good night’s rest and were on our way the next morning. Mom drove all of the way, I am sure, because I was worn out.

When we got home, I had to promise not to take much up into the house. I agreed, thinking that I would focus on the clothes that were in the trunk, which I carried up in I don’t know how many armfuls up to my bedroom. The garage is on the ground floor, kitchen, family and music rooms are on the first floor, bedrooms are on the second floor and computers and big red couch are up on the third floor.

I left the bags in the car and dealt with them later.

It took days to go through every bag to find the right place for whatever I had brought or to give away/throw out that which I didn’t need anymore.

It was too much, too soon. At least I had clothes now, but in the end, I learned the hard way that the trip to New York to pack up my belongings was too much for me. Now they I tell me!

Chapter 7

The decadron took a lot out of me. It was a prescription to be taken every six hours (no taking it early or there would be problems later). I started having an upset stomach due to the decadron, which is not the common reaction. The more common reaction is that it makes a person feel better and feel hungry.

Eating started to become a chore. I had to eat but it was hard to enjoy it as the stomach turned. [H/T Carol Burnett]

Sleeping also became more difficult. I’d start to feel better just before it was time to take another decadron and I’d nap for an hour or two. Then I’d get up, take the steroid and then I’d feel so queasy or alert that it was hard to get back to sleep.

I started to divide the night into four quadrants; Before 9; 9 to midnight; midnight to 3am and 3am to 6am. For reasons that I don’t understand, the best sleep always came in the first quadrant. I just needed a nap at 7pm or 7:30pm. I would sleep well until 9 when it would be time for another tablet.

If I could sleep well in the first two quadrants of the night, I would have a chance to get at least 5 hours of rest.

Most nights, I didn’t get that far.

Daytime, I don’t recall that I was cleared for regular exercise. If I remember correctly, I was waiting to meet with the brain surgeon at Mass General: Dr. Barker who was with the MGH Pappas Center for Neuro Oncology. I had appointments to meet with Drs. Barker and McKenna in mid September, so the early days were focused on healing.

While I wasn’t on the treadmill yet, I did start trying hand exercises to improve the use of my hand and fingers.

The first idea I had was to practice on the piano. Of the women and girls in our family, I am the worst piano player. This is not an exaggeration. I love music but I really stink at piano. I did reasonably well when I took piano again in my college and grad school years, but as I did not practice, I was back to being unable to read music.

One day, Mom was going to the library and I asked to go with her. I was not up to driving and it would be a good visit. I felt sheepish as I asked the children’s librarian for introductory piano books, but she helped me find some easy ones.

Armed with these, when we got home, I went to the piano and quickly realized that I had to remember the correct fingering.

I am also a person who learned to type on a manual typewriter and let’s just say that it was not a happy sound as I tried to practice scales and arpeggios. I was so self conscious about it, I would save the piano time for a time when both Mom and Dad were out of the house.

Now that I think about it, I am thinking that is how I used to practice oh so many years ago. I guess that means that you can’t teach an old goat to chase dogs, or something like that.

I gave up on piano as a means of getting finger coordination and dexterity back. I remembered that the occupational therapist had mentioned that a typing program would be helpful.

It took no time at all to find several, but I chose Fast Rabbit. Please note that I was not compensated in any way, shape or form from the makers or sellers of this program. Why I chose it was that it was compatible with my Macbook and it was inexpensive. I remember it costing about $10 but consider how swollen the tumor was, I could be wrong. I may have paid as much as $20, but even if it had been that expensive, it was valuable.

The exercise that worked best for me was to type the names of countries. It’s a game and there is a time limit on how slow you can be to correctly type each country.

I would play that when the sound was off,but I am sure that it would be easier to play with the sound on.

There were some countries that I could type easily as they were locations that I would work with regularly, like Venezuela. But try to get me to type Kazakhstan and forget it.

This didn’t do very much to alleviate the heavy tingling, but it did help with making my right hand useful again for work.

Chapter 6

I had two other trips, including a midnight run to get a follow up CT Scan with contrast. This was exciting because I was brought down in a stretcher or bed. I am not sure which. Scheduling scans and MRIs in the middle of the night worked out as it was easier to get an appointment than during the day.

I was taken down to the CT scan area and another woman was in process of getting one. I have never heard such yelling or complaining over such short, painless process! Soon she was shrieking, “that is the WORST CT scan I have ever had!” Shortly afterward, her bed was rolled out and she was left in the hallway.

“I have to go to the BATHROOM!”, she hollered. She had to wait a while. I don’t remember if she was taken back before someone came to get me, but I was moved to another floor to take the CT scan.

Before we started, the technician told me that they would take a scan, then I would get a contrast IV. Side effects to the contrast included an unpleasant taste in the mouth and that the patient would think that he or she had to use the bathroom, but that this would not be the case.

The CT scan went fine. I didn’t holler, yell or complain, but the side effects that they mentioned were correct.

When I got back to my room, Amy made sure that I had enough juice to drink to get the contrast out of my system.

Another trip was for a follow up MRI. There was a man before me and he said that he’d just had surgery the day before. I was impressed, because it was clearly his head, and he was speaking clearly – not drugged up at all. There were  no bandages on his head.

The technicians had to help him scoot over to the stretcher for the MRI. He really couldn’t help them.

I had a long wait as an MRI takes at least 40 minutes and if memory serves me correctly, this was the test in which the machine had to be restarted more than once.

By August 26th, I was at a point in which I was out of danger. The platelets had done their work and I was no longer at risk.  My friend Roberta offered to pick me up and take me home, which was a fair way out of her way and was very kind of her.

I met with the social worker and we discussed what should happen in order to file for short term disability. She gave me her card and told me that I could fax the forms to her and that she would help me get the doctor’s signature.

I also met with the physical therapist. She gave me names and contact information of physical therapists near home who specialized in vestibular issues. She gave me some exercises to work on and showed me that when I stood still and closed my eyes, I would wobble back and forth, straining to keep my balance. That was the effect of the tumor.

Lastly, I met with the occupational therapist. She gave me some information for after the surgery and she tested if I could open the hallway refrigerator, get out a container of juice, pour it into a cup and put a straw in it.  It was harder than I thought. I could hardly open the door of the refrigerator, but I managed.  Each tiny task was a big challenge.  How much in my life I had taken for granted!

The trip home was difficult as the heat and humidity were overwhelming. Roberta had picked me up and driven me home, but it was so overwhelming in the car, I plastered myself to the seat to help myself to be able to breathe and for my heart to beat.

I was so worn out from that trip that I could barely stand when we got home. I almost thought that I needed to go back to the hospital, I was so weak.

I thanked Roberta, who had stayed with me at the hospital much longer than she should have – it was quite an exercise to get the paperwork coordinated to be able to leave. She needed to be on her way so we said our goodbyes. Then Mom, Dad and I went out for dinner – a cheeseburger, fries, cole slaw and ginger ale. Good thing that I could eat – eating would prove to be more difficult as the decadron had taken effect.

By the time that we had finished dinner, I felt a lot better after the prolonged exposure to heat and humidity.

When I was leaving the hospital, a neurologist told me that I was only to do what I felt comfortable doing. I don’t remember if I was told not to bend over at first, but definitely no blood thinners, like aspirin, and no bumps on the head. Too late for the latter. I had balance issues while I was still in the hospital and had a few minor bumps when I lost balance in the shower.

Lest you think that I was overdoing things, let me note here that I was sitting on a shower chair at the time. I did say that I was injury prone.

The other thing that was noticeable were the deep, dark and wide bruises in my arms where they had taken blood and stuck me with IVs. These bruises had taken well over a month to heal. They weren’t painful so much as a sign of bad things going on in my head.

In no time, I learned how weak I was. One day, I went to the kitchen to get something to drink. The jug of milk had been opened previously; I just had to flip the top off. I couldn’t do it.

I couldn’t take a cap off a bottle of Tylenol. In discovering the hemorrhage, Dr. McKenna told me that I had a cavernous malformation. It’s a birth defect: a collection of veins that should be neat, but mine were in a tangle. Under normal conditions, these may leak, but the effects are benign. In my current state and for the rest of my life, I had to avoid all aspirin, ibuprofen, and any and all blood thinners.

In the hospital, I had done a little “jog” up and down the hallways. Dad volunteered to go on walks with me, and it was much more difficult. The roads were uneven and it was difficult to balance.  I had joked to my Aunt Betty over the phone that Dad would take me on my invalid walks.  That was spot on.

What I didn’t tell Aunt Betty is that there were two occasions in which I forgot where I was.  One was when Dad and I were walking along in our neighborhood. We were walking back home and as we were walking uphill, I couldn’t remember what street we were on. It was only for a split second but it scared me. Another instance was when we were in the car and I should have known where we were. Again for a split second, I lost the references as to where we were.

Chapter 5

I had started letting more and more friends know. As I didn’t have computer access, I asked some friends to pass the message along; that I had had a minor brain hemorrhage and that I had a significant but noncancerous tumor and that I was in the best place for me to be.  John was the first person to start the relay to my friends from out of state and eventually I was called by Parris, Dolly, Elaine, Pam, Sharon and Griff.

I also spoke with more family members. My sister lived in India and somehow we got word to her. I also spoke with my Aunt Agnes and Aunt Kathy and I don’t remember who else.  My joking excuse is that the pressure against my brain was causing some short term memory loss.

I’d been receiving messages from friends who had spoken with Mom and Dad.  The outpouring of support was amazing and a gift that I cherish.

Everyone wished me well and we relieved that I sounded so upbeat. I was upbeat. I was guessing that I’d have surgery on Wednesday, but no one had told me as much. I’d been told that I couldn’t have surgery until the hemorrhaged area healed.

I also received flowers from family and friends. They were beautiful and what was surprising was that they matched. Each had chosen a green vase with orange flowers and greenery. They were beautiful.

I was learning to live at a slower pace. It was out of necessity, but even from the hospital, I could see how much more slowly I would be living.

The good news is that this slowness helped me to find time to think about what could be done to stop the dizzy spells that I had been dealing with before getting sick and to eliminate the risk of another hemorrhage.

I made sure to do little exercise every day. I would “jog” up and down the hallways. It was more tiny little bopping than jogging, but it kept me moving and the nurses were really happy to see me doing that.

There was a Neurology ICU down the hall. Outside that unit, there were benches with padded seats. As I bee-bopped up and down the halls, I saw families nestle in to wait to hear for news. Sometimes, families brought toddlers or younger so that they could all be together.  Listening to the different languages in the hallways, it seemed as though they had come from all over to have a family member treated at MGH.

While my situation was improving, my roommate was put on a short list to have surgery to remove her tumor. She was told to fast the night before – she let herself have a nice dinner and also a hot chocolate. Then they came to take her and my prayers went with her.

She was in ICU for about a day afterwards and by then she was rooming with someone else. I saw her daughter come to visit the day before I left but I didn’t find out what room she was resting.

I was moved across the hall to another room with a woman who was recovering from some sort of surgery, but it wasn’t head-related. Her husband and grown and married daughter came in and spent the whole day with her.  I wish that I could remember her name. I have never been good with names, but I can picture the whole family.

She was having difficulty speaking normally and her memory was not what it was. But the family did well by watching musicals together on the daughter’s laptop. I remember that they were watching “Singing in the Rain” and my roommate was almost normal.

I think that her family helped her have a frame of reference. When they left for the evening, she would get confused – her references to the world that she knew were gone. This is one reason why I really liked  the other night nurse, Amy. She was spunky, full of fun and easygoing all at the same time. She reminded me a lot of Parris – maybe she was her younger cousin! Okay, I am not spreading rumors. I am just kidding.

Amy understood that my roommate would get confused and still treated her like a sapient human being who needed extra kindness. When my new roommate would press the call button repeatedly in the evening,  Amy had checked each time. After two times where nothing appeared to be wrong, Amy brightly suggested that maybe my roommate was uncomfortable and would she be more comfortable in an easy chair out by Amy?

These were lovely leather reclining chairs, very comfy and very well padded. And this seemed to help my roommate beautifully.

There was a day nurse who helped to took care of this lady. The day nurse was a nice person, but she had a habit that I didn’t like: to speak to this lady kindly, but as though she were a dingaling. This happens in nursing and when people care for the sick and it’s sad to watch.

It turned out that the neurologist wanted to discharge this lady. She’d had a surgery and was healing physically. The mental condition, this was something that the neurologist could not explain to the family. I felt so bad for the family.

Amy was very thoughtful.  She would get me extra juice when I was taking my medicine. The “No Free Water” rule meant that there was not a pitcher of something to drink handy, so I had to ask each time, but Amy understood.

She told me to talk to Dr. McKenna the next day to tell him that my pulse went really low when I slept: it would get as low as 45.

I used to exercise a lot years ago, so I thought that might just be normal for me, but I did mention it the next day. I didn’t have to go to battle anymore, but the first several days made a big impression.

With the coffee quest in mind,  I met with Dr. McKenna and as one of the nurses had asked for an expert to draw blood. We were running out of veins and Pedro was an expert. But it hurt to have it taken from my hand.  I was turning into a pincushion.

I mentioned to Dr. McKenna about the pulse during sleep and then I piped up: “This would not be a problem if I could drink coffee!” Everyone laughed. The doctor said, “She has a point!” Pedro the expert nurse offered to get me a Red Bull, which I declined politely.