Fever Pitch

On Thursday afternoon, Kristine called me at work. She was not feeling well, complaining of a fever and stomach ache. When I got home she was pretty worked up. She normally has trouble getting comfortable - we all take for granted the small adjustments we make to our body's position while remaining stationary for any length of time -- but for Kristine any additional malaise can be a tipping point to emotional distress. I think just my presence helped to calm her down. I got her to bed where she was able to doze off for small intervals as I lay at her side.

She periodically awoke shivering with chills despite several layers covering her. All evening I monitored Kristine's temperature. At seven o'clock it had reached 102.7degrees Fahrenheit, but by eight it was down to 101.5. The reduction in temperature helped us both to relax enough that we were able fall asleep.

Then, at around 9 o'clock, Kristine's body jolted and she let out a horrid, muffled wail. I jumped up from my sleep to see Kristine's left arm and the left side of her face and neck in a quick, rhythmic and violent spasm. Her entire body moved in unison with her convulsing left side. I ran around to her side of the bed lifting her torso upright in order to sit behind her and press her back against my chest. I grabbed hold of her body grasping her left shoulder with my right hand and the side of her face and neck with my left in a vain attempt to slow or halt her contracting muscles. Kristine was aware but groggy from her sudden awakening from a deep medicated sleep. Her attempts to cry out were suppressed by her inability to control her mouth -- her efforts to speak yielded only a dull, muted bellow and a stream of involuntary saliva from the corner of her lips.

The episode passed in less than a minute but it seemed like several. Kristine was fully conscious during and after the event. We were both shaken by what had happened, but I can only imagine how scared Kristine had to have been. As a result of what we presumed to be a seizure the left side of Kristine's face remained drooped and the movement she had previously established in her left hand was no longer evident.

My first reaction was to call the doctor's office. Kristine at first opposed the idea, fearful of yet another trip to the ER, but she quickly came around convinced that it couldn't hurt to call. The on call resident in the Department of Neurosurgery responded promptly to his page. After reading through Kristine's file and hearing the details of the night's story he was less alarmed than we expected. He said that the incident was isolated (the spasms had not reached her leg) and was likely an "uncomplicated" seizure (classified as such based on Kristine's alert mental state). He said that a trip to the ER was not necessary, but to watch for additional deterioration and instructed us to pay a visit to the office first thing in the morning to exam Kristine more closely.

Kristine was quite composed after the call. An hour had passed since the seizure and Kristine calmly picked up her left hand, wiggled her fingers and said that her movement had returned. Glancing at her face I noticed, to my delight, that her facial muscles had also rebounded as she flashed a soft smile.

The entire moment was surreal. But just after the seizure and before the doctor's call Kristine said something that was all too real. She instructed me soberly and with little emotion that should anything happen I was not to, "do anything drastic." Implying that should we face another decision to extend her life with any consequence of additional physical impairment, the alternative was not just preferred but mandated. We have talked about this several times especially after her brain surgery, however, it never gets any easier to face. Although I know that I have to be prepared I remain optimistic that I will not have to encounter such a decision anytime in the near future.

Kristine is doing well now, though still slightly shaken. Her MRI did not return any urgent issues. In fact there is a strong possibility that Kristine's fever triggered the seizure as an isolated occurrence verses a more serious clot or hemorrhage. Our neurosurgeon has suggested at a conservative approach forward. We will be meeting with him on February 2nd to discuss potentially treating the original site of the resected brain tumor with Gamma Knife radiation. Kristine and I are apprehensive about this since it could set Kristine's physical rehabilitation back further or even permanently. We will cross that bridge when we come to it.

5 days to 3

As it turns out Kristine will not be continuing day rehab through January. Instead her rehabilitation team has decided that she would get just as much from the out-patient program. She will continue her full day program until this Friday and transition to the 3-day program the following week. Her planned schedule is Tuesday, Thursday and Friday from 8am to 10am. I will be continuing to shuttle her to the rehabilitation center in the morning and we will continue to rely on friends to pick her up.

Kristine has been getting around pretty well on her own so her time alone at the house, though challenging, will be manageable. She will welcome guests throughout the day to break up the monotony of television, books and phone conversation and we will set up local emergency contacts for her in case of any issues. We are going to have to be even more organized headed into this next set of circumstances. Everything from making lunch to answering the door presents difficulties and hazards for Kristine. We have to ensure that things can be accessed easily and used with just one hand. It's amazing how many things we take for granted in our daily routines, things that become substantially more difficult to nearly impossible with the use of only one arm. Take washing your good arm or opening a jar for example. Even more difficult, try moving a glass of water from one room to another when doing so requires you to use your only able arm to balance your walk with a cane.

The pain and discomfort that Kristine is experiencing is impacting her mental fortitude. Her left shoulder is tight with involuntary tone while her arm hangs out of socket causing sharp pain. Her right shoulder is swollen and tight from the remaining tumors in her lymph nodes. Kristine's hot flashes have also reemerged making it difficult to regulate her temperature. The tumors in her lungs are inducing uncontrolled coughing which makes her whole body stiff and even more uncomfortable. All of these symptoms make getting through the day frustrating and exhausting. Kristine is doing an amazing job of holding herself together and fight on, but she could definitely use some reprieve.

More Rehab

Kristine will be continuing day rehab through January. While this means another few weeks of crazy schedules for Kristine, me, and the friends that have been helping with transportation it's, more importantly, a great chance for Kristine to progress closer toward physical independance. Our insurance will cover the day program as long as our doctors and therapists believe that it will maximize her recovery and she continues to see positive results beyond what she might from normal activity. This is good news since once she leaves the day program she will move to the out-patient program, which is limited to 40 visits a year. Most everyone agrees that the more intensive therapy she can receive in her first six months of paralysis the better chance see has of regaining close to full movement.

Other than this there is not much to report. I am going to limit the blog posts to once a week and will post them by Monday morning each week. I will only post more frequently if an emergency arises or we have dramatic news to report. I think this will give everyone a more regular update.

Tiny 'Stines

Happy New Year to everyone checking in on Kristine's progress. We are certainly hoping for and looking forward to some good news and brighter days in 2009. All in all, 2008 was not all that bad up until the last few months, of course.

Our holidays were nice. We stayed in Philadelphia and enjoyed some quite time by ourselves as well as some fun times with friends. Kristine had rehab everyday except Christmas and New Year's day so we maintained a fairly hectic schedule. We enjoyed Christmas dinner locally with friends. Kristine, cane in hand and equipped with a nickname her father gave her growing up as a thin young kid, "Tiny 'Stines" became our personal version of a Christmas Carol's Tiny Tim.

Progress is slow but continues steadily for Kristine's physical rehabilitation. She has recently begun walking without her cane in therapy and at home with assistance. This is a big step forward as her therapists try to push her to the next level. She is doing more intense weight bearing exercises on her arm and leg to improve the chances of activating some of the larger muscle groups (such as her shoulder, bicep and hamstring) that have been slow to respond. Periodically, Kristine will discover a new movement of which she was not previously capable. I can always tell the instant it happens by her elated expression -- characterized by a proud smile and eyes welling on the verge of tears.

Since Kristine's brain surgery and subsequent paralysis, we have been squarely focused on her physical recovery. Our friends, both local and not-so-local, have been amazingly supportive, picking Kristine up from rehab and spending time with her to ease the frustration of living with her disability (although we like to think of it more as a short term set back). But in the last several weeks the swelling and pressure in Kristine's neck and shoulder have caused us increased anxiety over her cancer and it's progression. We have both been acutely preoccupied and concerned by it, harboring our distress about what the next scan report would bring. Kristine has several symptoms that had us worried. There is a visible lump in Kristine's right shoulder that has taken shape in just the last few weeks. Additionally, Kristine has been getting a tingling sensation on the surface of the back of her head, her cough has been getting more frequent, and she is getting numbness in her right fingertips. We both had convinced ourselves of the worst.

This past Friday, we received the results of Kristine's latest scans from Dr. Staddon's office. Kristine, apprehensive about the potential report, opted not to pay an office visit to the doctor. Instead she had me accept the update over the phone and relay it to her. Neither of us were expecting the news we got. Although the news was not altogether positive, it was far better than what we were expecting. A couple of the metastases in Kristine's lung are marginally bigger (approximately .1cm x .1 cm) with the remaining mets unchanged in size and no new lung disease. There is no remaining disease in the brain or blood vessels that the pathologists can detect. There is, however, inflammation of a few small lymph nodes along the top of Kristine's right shoulder. These inflamed lymph nodes were previously undetected. Although it is possible that the inflammation is being caused by some other infection, it is more likely new cancerous metastases. The nurse practitioner who delivered the report said that the lump that we can see and feel in the shoulder is likely exaggerated in appearance due to its location. She said that the numbness in Kristine's fingers could be a symptom of the swollen node pressing against a nerve in her shoulder or a delayed effect of the gamma knife radiation.

The news was a huge relief to both Kristine and me. I think it gave us both the ability to take a deep breath, regroup and focus on a game plan to kick the crap our of cancer in 2009 -- or as Kristine likes to say, "kick cancer in the ding-ding" (I'm not as keen on this expression for obvious reasons).

As we enter a new year, we hope for promising new beginnings and, to use Tiny Tim's line, send a message to all our loyal supporters, God Bless us everyone.