FAIR VIEW

Back to Brush with Death – Part 8

They wheeled me out of the hospital and there was the LOML in our white 1991 Audi Quattro waiting to drive me home. I couldn’t be happier. The drive home was uneventful.

As soon as I got out of the car on our property, I noticed that when I left (you know, via chopper) there were no leaves on the trees. Now there were leaves on all of the trees (maples, oaks, beech, etc.) and flowers everywhere. Spring had sprung and the whole world was bright green again. It was really good to be home in spring-time with all of the flowers blooming. I felt as if I had never noticed them before. I walked around our property and examined each tree, shrub, flower and weed to see the progress from bud to flower to seed. The rhododendrons, azaleas, wild roses, lilacs, peonies, iris, and many other flowers were blooming. Even the lowly dandelion was in bloom. It felt as if I had never noticed them all before. Each day, I walked the property to note the progress into summer and fall.

Phil and the LOML had built a bed for me downstairs in the dining room while I was recovering. I remember sleeping there and the sun would rise and shine into the dining room windows too brightly waking me.

Some home care professionals visited me to see how I was getting along and examine the adequacy of my accommodations. They determined that I could stay at home instead of going to a step down. Thank God! A physical therapist also visited and walked me around as far as I could go. She decided that I needed to walk by myself and needed no help from a pro. I decided that I needed speech therapy to deal with my aphasia (inability to grasp words), but the other valuable result of the therapy was to instill confidence in my ability to concentrate. My sister visited me with my niece and it was really great to be alive. My brother visited also.

But over the next few days the rash quickly expanded from my torso to my limbs and was tremendously itchy. The LOML looked up Dilantin, the anticonvulsant I was on since being diagnosed in the hospital, in the Physician’s Desk Reference (which I owned because of my job at a pharmaceutical company) and found that Dilantin could cause a measles-like rash and fever. We telephoned Dr. G, my new neurovascular surgical attending in the hospital, and he agreed that Dilantin was the cause of my fevers and rash. He prescribed Tegretol and instructed me to discontinue Dilantin. Important lesson here readers: You or your family must be your own doctor at times and look out for your own health because no one cares more than you do.

We went to see our local doctor about something for the itching and she was impressed by the classic presentation of a Dilantin rash and called in a medical student to see it. Aim in life number one: don’t be a classical presentation of anything for medical students. She prescribed cortisone containing lotion, Sarna, and Aveeno baths. She mentioned that the rash would last some weeks. Shit. That sucked because that sucker really itched. It was far worse than poison ivy. I couldn’t sleep at night. The LOML was up giving me baths all night. It seemed to last forever and it was worst when it was on my feet.

Once outside the doctor’s office, I finally admitted to the LOML the statement that the evil Dr. M had made about ‘no more short hairstyles’. He was appalled and called her later that day to tell her off. He pretty much told her that how could she say those things to a person who had had brain surgery only a few days before and being a doctor she should know better. There was really no excuse for what she did what-so-ever. He would not mention it to her boss at this point but she had some nerve and had better watch her step. Dr. M ate some crow, I guess, and offered to send me a free dinner from the restaurant of my choice to smooth over the issue. But since I was throwing up my dinner routinely (a side-effect of Tegretol) this was not an appealing option. So, we refused. Throwing up was also unacceptable, since I had lost so much weight in the hospital, so I decided to halve my dose of Tegretol, not believing that I would ever have a seizure.

The LOML tells me that he was at the hospital every day. So was our dear friend Dr. L. Also, the LOML’s eldest brother, Phil, came down from Chicago to see if he could help out. Evie also visited repeatedly while I was in the NICU and brought a poster drawn by her daughter. She was comforted that I could read what was on it. Flower arrangements arrived in droves. I don’t remember any of these events.

The following day, May 8th, the hospital staff decided that since I was so frisky, I would be taken on a walk. A cute, burly and fun physical therapist put me on a waist leash and let me roam around the hospital, or so it seemed to me. (My hospital physical therapy records indicated that I was taken on such walks every day; I just didn’t remember them until this day.) I felt so free. We did some stairs and ran around the floor. He was amazed by my excellent physical condition. My lack of memory seemed to amuse him also. But I didn’t mind. He used to say, “What is my name?”

“Bob.”

And we would laugh.

“Mark.”

And we would laugh again. He was a lot of fun.

Evie says she was there when we returned to my room. She has since told me that she thought he was a cutie pie too.

That day, I was moved to a private room in the neurology unit since I was doing so well. Actually I was their star patient. From this point on, I remember a bit more of what was happening to me.

I remember the first time I looked at myself in the mirror in my new room and saw that the front half of my head was shaved. I could also see my ear to ear incision closed with staples. It was a bit shocking at first, but I remember thinking, “Okay, this is how I look now.” Later on, when I was walking around the hospital, and I saw other patients with shaved heads, I felt proud, like I deserved to wear it like a medal or something. I survived brain surgery and here was my medal.

I also was wary of the bathroom. I was still a bit paranoid about the biological samples thing and didn’t quite remember what to do in there as far as washing up. But a kindly, experienced and understanding nurse came in and helped me through all of the steps. She was quite comforting and reassuring in a way that was exactly what I needed. It’s a funny thing when you lose such basic knowledge and have to relearn it. Then, she helped me back into bed.

Later that day, one of my surgeons, Dr. W visited me. (I had never met him before, even though he had been inside my head.) He was dressed in a kind of punk style, all in black, a belt with studs in it, etc. His black hair was up in spikes. He was so positive and upbeat that I could not help but feel better. He said that I was doing really well and that he would try to get me into the very best recovery step-down institution in the state, to speed my recovery. I told him thanks, but that I just really wanted to go home.

On Monday, my boss Dr. M telephoned me and wished me well. She then proceeded to tell me that it was my obligation to let her know if and when I would be returning to work. I felt that this line of questioning was very inappropriate and it bothered me, I mean, gee whiz, I had just relearned how to wash and was still in the hospital with my prognosis generally unknown. So I flippantly trumped her by saying that I was still trying to get accustomed to the huge crack of a scar across the top of my head.

Her response was, “yeah, I was going to tell you Sue; no more short hairstyles”. This remark was highly insensitive and inappropriate. As I was absolutely lacking anything near whatever it took to confront her on it, so I decided to agree with what ever she asked next. She requested that I ask my surgeon when I could return to work next time I saw him. I knew that I had an appointment with Dr. W a couple of months later, so I agreed. She became the evil Dr. M in my book at that time.

The next day, my ex-boss Dr. R visited me. I tried to sit up for him and found it difficult to operate the bed. He was very kind to me, a real human being. He brought me a book, Uppity Women of the Renaissance. He asked if I intended to visit work during my convalescence, to make sure to let him know. I gladly promised.

I now became driven to be discharged. But I had a fever that came and went. No one could figure out what it was from. I was treated with endless regimens of antibiotics. There was a plan to discharge me on May 14 and when I spiked a fever on that day, I was so pissed off that I refused to do my physical therapy.

One day, a doctor came in to remove my staples, and central line. I looked at my chest and noticed some rash there. I asked the doctor to look at it, but she misunderstood and thought I was talking about the holes from the central line which she remarked would heal. Perhaps it was the aphasia, my post surgical inability to produce words, but I did not have the wherewithal to make her understand me.

My sister gave me a hat and two scarves from the GAP to cover my head when I was discharged. I appreciated her thoughtfulness.

I was discharged the following Saturday morning, May 15. It was agreed that I could go home instead of to a step down institution since the LOML worked from a home office and would be available 24 hours a day. The Occupational Therapy Notes stated that I had been assessed as needing supervision and or cues for bathing, dressing, ambulation on level surfaces and stairs, home management, hygiene, eating, toileting, and getting out of bed. All I can say is picky, picky, picky. Sounds to me like somebody was making sure they wouldn’t get sued. You lose all of your rights as soon as you are a patient. I was also noted to have mild balance, mild endurance, significant complex problem solving, memory, slowed comprehension and mild cognitive deficits as well as mild aphasia. (With brain injuries some of these may heal within 3 – 6 months while others may take longer or not heal at all.) The LOML and Phil had to build a bed on the ground level of our house so that I would not have to climb stairs or “Architectural Barriers” to get to our room. An outpatient service was going to come by and inspect my living situation soon. Oh joy! But the most important thing of all was that I was free.

FREEDOM

Stay tuned for the convalescence…

On Tuesday, my former boss from Oncology Clinical, Dr. D, visited me at the hospital. I forced myself to remember because he brought me American chocolates and I gave him a hard time because we had together experienced Belgian chocolates in Europe. He “force fed” me one, telling me that they were really okay. It was very sweet of him. God, I am so spoiled.

At some points during my hospitalization I had a high fever of unknown source and was treated with various antibiotics such as, ampicillin, cefazolin, and gentamicin and ciprofloxacin. During this time, the LOML tells me that he frequently changed my diapers (now if that is not love, I don’t know what is) and untied me from the restraints that held me down. When he inquired of the staff why I was tethered, they said that I was “restless”. I don’t remember when my good friend Karen visited me. She told me that I was sitting up talking to her and said that I said that I was “devastated” by all that had happened to me and that my bleak outlook concerned her.

My next surgery was scheduled for the following Thursday.

On May 6, my craniotomy was reopened and AVM was micro surgically excised by Dr. A, who flew in from his sabbatical, and Dr. W. The pathology report indicates that they received a 6 x 3 centimeter mass. Step two of the treatment plan completed. Hooray!

Evie was the first to see me after this operation and she noted that my lips were blue and that I looked grey. She notified hospital staff of my apparent anemia and my blood counts were run. My hemoglobin was 6.5 g/dl (normal is 12 g/dl – 16 g/dl) and HCT was 18.9% (normal is 36% – 48%). I was administered 2 units of packed red blood cells and that pinked me right up. Good call Evie!

After my surgery my family was relieved that I was still able to speak clearly, though hesitantly, and though weak, I remained in the neuro ICU spiking fevers, not eating that well, confused and without any recollection of events in the hospital. I could still move, stand and walk easily with only minimal assistance. But in retrospect, I guess that all I needed was some time to recover.