In Her Shoes

When I asked Kristine what I should write about this week she replied, "shoes." That's right shoes.  With all that is going on in her life and all that you would expect her to be absorbed with during such a time, Kristine has but one thing on her mind. She is preoccupied by, if not obsessed with, the fact that she has an entire closet full of shoes and is restricted to just one pair of sneakers. This is, of course, because she needs added stability while she regains mobility in her left leg. However, this fact doesn't help abate her desire to buy and wear a variety of different types of footwear.   

I can't exactly put myself in her... ah-hum... shoes partly because I don't have her disability leaving my options completely open, but mostly because I can't even fathom having any sort of obsession with this attire for the feet. Even when I have had more than one pair of shoes at any single point in time (meaning two or maybe three if you include sneakers or flip-flops) I still gravitate toward that same familiar, established, no-need-to-break-them-in-any-more, comfortable pair of shoes.

For Kristine though the idea of wearing just a single pair day in and day out is torturous. She much prefers to have an assortment of different options at all times. When we travel anywhere at least half of our luggage is her shoes (this is no exaggeration). And buying shoes is like going on safari -- she hunts down her prized pair even if they just look good in her closet next to her others.

At the moment she can't even justify buying an additional pair of sneakers because the brace on her left ankle stretches the shoe out and she doesn't want to ruin another pair.  Knowing Kristine though this problem will not persist. Just like her dissatisfaction with the plain and unattractive canes she was finding eventually led her to a modern fashionable one from a London based company (switchsticks.com), she will again find a way to improve her look within the confines of her physical limitations.  

On a more serious note, ever since she has gotten over her respiratory infection Kristine has been coughing up a very small amount of blood almost ever day.  We talked to both our primary physician (who recently saw Kristine for her infection) and her Oncologist about this issue to better understand the severity. Both suggested that it could very well be related to the prior infection or to the frequent coughing that she has been having. Of course, given her current condition -- cancer in her lungs -- the blood is a cause for some concern.  Our Oncologist suggested that Kristine just watch it while she is in Houston to make sure it doesn't get any worse and to set up her 3 month check up scans as soon as she is back in Philadelphia later this month.  Neither doctor seemed overly alarmed given the very small amount of blood that is presenting, but just cautioned us to keep an eye out for more severe symptoms.  Otherwise Kristine is doing very well, feels great and is enjoying the warm Texas weather, even if she does have to enjoy it in sneakers. 

Taking It Easy

Kristine is doing very well down in Texas with her family.  The weather has been nice and warm giving Kristine the opportunity to take in some sun.  Those of us on the East Coast are surely jealous, especially given the impending snowstorm that is headed our way.  She has started on a couple of natural therapies that have made her pretty tired, but the extra rest is probably doing her some good. Her mother has been disciplined about stretching her left arm and shoulder.  It's critical that Kristine keep her muscles loose so that when she does regains movement she will maximize her range of motion.

We have started to talk to one another via Skype.  Skype is a free application that allows you to talk over the Internet at no cost with anyone else who is also on Skype.  You just talk through your computer's microphone and speakers or through a headset.  You can also use a webcam to view one another live, which is what Kristine and I have been doing.  It's so much better to see the person on the other end of the line, especially for someone who does not like talking on the phone much like me.   

I've posted a slide show of pictures in the upper right corner of the site.  You can either watch them here on the blog or you can click any of them to view a larger version of the slide show.  I know, it's about time I got some photos on the site.  Enjoy. 

Texas Size Surprise

I've had to remain pretty evasive about Kristine's plans to visit her family in Texas in the last few posts. Kristine and her three sisters have been planning to surprise their father, Jim, for his 65th birthday for some time(their mother Connie was, of course, in on it as well). They succeeded this past week when on Wednesday Colette and Stephanie caught him by surprise by showing up unannounced. Then again this past Friday, Kristine and Gretchen where waiting for him when he came home. He was floored and truly had no idea. It isn't often that the whole Becker family is together in one place. Especially under the current circumstances with Kristine in her current condition and Colette due with her first child soon. They are visiting all this week, a week likely filled with card games and lots of laughter. Although, as I understand it, the girls took over the living room and main television to watch the Oscars, relegating Jim to the bedroom for the evening.

Kristine will remain in Texas for the next few weeks. It's a great chance for her to relax in some warmer weather and focus on her alternative natural treatments. For me it is a much needed respite and a chance to regain energy before we begin our schedule all over again. Although a have to admit that I am already a bit bored all by myself. I'm getting a little taste of what her family and friends must go through being on the outside with only periodic updates wondering if she is OK. To an extent I think the discipline of a routine helps bring a feeling of control to an otherwise intractable situation.

Before Kristine left for Texas her cough, which previously was nagging but never serious, got much worse. In the week leading up to her trip her cough began yielding some fluid, a sign that she had likely contracted some kind of infection. Kristine went to our primary care doctor to get checked out. He was initially concerned that she might have pneumonia. However, subsequent x-rays proved otherwise. She was given an antibiotic to kill whatever was causing her illness and she has since noted that her cough has improved significantly.

V-Day

My apologies for being a day late on this week's post. I was a bit turned around by the President's Day holiday, which I had off, and thought that today was Sunday.

This past Saturday was Valentine's Day, exactly two year's to the day that Kristine was taken into the Aspen Valley Hospital and diagnosed with cancer, ironically in the veins leading to her heart. It wasn't until I sat down to right this post that I even remembered this fact -- neither Kristine nor I mentioned it all weekend long. I guess it's the kind of anniversary that you try to suppress from your conscious memory.

Kristine and I agreed when we first met that Valentine's Day was not a holiday that we were into celebrating. To us it is just a marketing hoax to sell chocolate and flowers. Not to mention it's impossible to get a reservation anywhere unless you book months in advance. So Kristine invented our very own day, "I Love You Day." It is once a year on any day we choose and it's always easy to get a dinner reservation.

Ever since our approximately 8 year boycott of Valentine's Day and the genesis of I Love You Day we have not ventured out on the holiday. This year, however, we got tickets to see Rufus Wainwright at the Kimmel Center in Philadelphia. We have been looking forward both to seeing Rufus in concert and to experiencing a show at the Kimmel Center for a long time. The only problem was that the show fell on V-Day, forcing us out into the mayhem of couples scrambling to make their reserved dinner appointments with flowers and chocolates in hand.

The concert was great but it was a challenging experience for Kristine to fight the show crowds. Upon entering the center Kristine became anxious and a bit panicked. She struggles to remain stable while walking as it is without the threat of being bumped by a sea of hurried people moving in all directions. We made it through unscathed on the way in and left a little early on the way out to avoid the crowds. All in all, I think it was good for Kristine to build some confidence in physical abilities.

Thing are well otherwise. Kristine is making good progress in therapy. This is especially true in aqua therapy where she has been seeing a measurable difference in her performance in just 4 sessions, which has had a positive affect on her motivation and attitude. Kristine continues to fight the bug that is going around. This has exacerbated her cough and caused several fever spikes in the last couple of days causing us both a great deal of concern. So far though we have managed to keep the fevers down and she has bounced back quickly.

Clean Brain Scans

Aside from the cold that she picked up this past week, Kristine is doing very well. Her temperature increased a couple of times over the week, which of course had us both pretty nervous given the linkage to her risk of seizure. We were able to manage her fever down though with a little Tylenol.

We met with Kristine's neurosurgeon, Dr. Lee, on Monday to discuss Kristine's MRI results and the medication he initially recommended after her seizure. He had nothing but positive news for her. He said that the area around the removed tumor in her brain looks clean of any disease and that the second tumor that received Gamma Knife Radiation is shrinking (a sign that the tumor cells are dead and being destroyed by the body). And contrary to his original position, he did not feel that it was necessary to do any additional Gamma Radiation on the first tumor location since it looked so good in the scans.

Dr. Lee also agreed that it was not necessary for Kristine to take seizure medication if it decreased her quality of life and her ability to recover physically. He said that she just needed to be careful to avoid stress on her body. Fever, illness, exhaustion, dehydration and lack of sleep among other things could trigger another seizure.

Kristine surprised Dr. Lee when she moved her hand after he asked how she was progressing. He had not expected this kind of progress so quickly. He was also pleased to see how well she could move her leg when she walked.

Our friend Shannon is in town this weekend visiting. She and Kristine got to catch up, watch bad TV and give me a little break from our routine. Fortunately we do not have any doctor's appointments this week, Kristine just has her standard physical therapy schedule. At some point in February she is planning a trip to see her parents in Texas. She will miss therapy for a few weeks but the sunshine and warmth will do her some good. Plus, as attentive as I am to her needs, her mom will undoubtedly be much more diligent at following through with her stretching routine.

Unmedicated

After Kristine's episode two weeks ago Thursday her neurologist put her on an antiseizure medication. His concern is that having had one seizure Kristine is now at a higher risk of having another. Kristine took the medication as directed for a few days, but almost immediately she experienced some adverse effects. She was getting very dizzy, began to get depressed and started having increased problems with her muscle coordination -- a concern given her current physical state. Kristine, frustrated with the side effects, stopped taking the pill and experienced instant relief from the past days' symptoms. We have an appointment with Dr. Lee on Monday to discuss the medication and Kristine's next steps. The doctor will likely encourage Kristine to continue taking the medication for fear of reoccurance, however, it is unlikely that Kristine will take heed of his advise.

This past Wednesday we met with our cardialogist Dr. Miles to discuss Kristine's heart pauses and another of her medications. The doctor urged her to get a 24 hour halter monitor hooked up to measure her heart rate over and encouraged her to remain on the medication until we could review the results. As you may recall, the premise driving the medication began after Kristine's brain surgery when the doctors found that her heart experienced occational pauses. At the time they recommended installation of a pacemaker to prevent a more prolonged pause that could cause Kristine to faint or, in a more unlikely but serious scenario, for her heart to stop altogether. Kristine chose to go on the medication in lieu of the pacemaker. In our Wednesday meeting with the doctor Kristine insisted that she go off of the drug. Dr. Miles again reiterated the risks of doing so. Kristine responsed to the doctor's rebuttel explaining that she wanted to deal with it if and when more serious problems occur, the most likely of which (fainting) seemed managable. He had trouble disagreeing with her argument.

In both cases, discontinuing the medications did a great deal to make Kristine feel better emotionally and physically and she is feeling quite a bit better. From her standpoint she is fighting against the odds of an abbreviated life, so living miserably with the side effects of drugs that simly aim to prevent small incremental risk of death doesn't make a whole lot of sense. So for now she'll stay off as much medication as she can to feel as good as she can and focus on staying strong.

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.

Slow and Steady

Not much has changed since the last post. Kristine is progressing well physically. She is able to walk with more confidence and with a slightly longer stride. She is still walking slowly with a cane and still requires someone to spot her in case she loses her balance. Her arm is flaccid and uncomfortable as it continues to separate away from the shoulder. She has been receiving electrical stimulation therapy around the shoulder to encourage the muscle's tone. The grip in her hand is more controlled and she is able, at times, to extend her arm at the elbow.

We are both sleeping better. Kristine has been taking a single sleeping pill before bed which seems to help with her anxiety. She will usually wake up no more than once to change resting positions and again to use the bathroom. Of course, with the extra steps needed to get ready in the morning and to bed at night we are certainly not getting as much rest as we would like.

Friends have been great about helping -- picking Kristine up each weekday from rehab and spending time with her until I get home. Kristine loves to hear other people talk to her about what's going on in their lives and the troubles they have. I think some resist sharing what they believe are trivial details in comparison to what Kristine is going through. But Kristine loves to listen -- it helps her escape from her reality. She avoids talking about her own issues as much as she can.

Emotionally Kristine is struggling a bit. She told me the other day that she is constantly preoccupied with her affliction and the weight that she bears dealing with its consequences. She said that she does all she can just to hold it together without breaking down into tears.

Her anxiety is primarily centered around the choices (or lack of choices) that she has to make in fighting a recurrent cancer. Although the cancer in her brain has been removed or destroyed from the gamma knife radiation, she still has several lung metastases. And, as the days go on, the swelling in Kristine's right neck and shoulder have increased slightly, while she has simultaneously noticed more neck pain. This could be related to the additional load that her right arm has had to take on to compensate for her paralysis. However, we have both been around the block enough to know that this likely the ominous sign of a more sinister force at work. Let's hope that we are wrong this time.

Gamma Knife & Call for Help

Before I recap the last couple of days' events, I first want to throw out a call for help the next few weeks. Kristine's parents are leaving on Saturday for Texas which leaves Kristine and I to fend for ourselves and, as it turns out, para transit is neither easy to come by nor convenient. I plan on taking Kristine to rehab each morning, but can't pick her up every day -- I would never be able to work.

So we are calling any interested local friends to help us out if you are able. Here are the details: Commit to a single or reoccurring day of the week, pick Kristine up at 3pm from rehab on Columbus Boulevard (near the DMV and Target), bring her to our house and sit with her for a couple hours until I get home. The one thing we ask is that if you commit but then are unable to make it that you give us enough time to make other arrangements. Also, Kristine is walking short distances but still brings her wheelchair t rehab, so you have to have room enough in your car for the chair and be able to lift it (more awkward than heavy). If you are interested in helping out call or text Kristine and she can talk to you more about it.

______________________________________

Kristine is making great progress with her mobility. She is walking short distances with a cane, distances that have extended with each attempt. She is able to lift her leg at the hip allowing her to climb stairs, albeit slowly. Her control is still limited in her knee and ankle, which cases her to roll her ankle without the support of a brace and shoe. Kristine's left arm has also shown improvement. She is able to close her hand and even squeeze lightly, as well as move slightly at the elbow. These are all good signs that will hopefully give her more independence in the weeks to come.

Before her appointment on Tuesday afternoon with Dr. Staddon, Kristine was very emotional. She refused to see the doctor, expressing her frustration that the appointment would be a waste of time with no new information. I convinced her to go after noting the swelling in her right shoulder as a cause for concern. As it turned out Kristine was right about the appointment. There was no new information given and little attention paid to the new swelling. Dr. Staddon laid out the options clearly and matter of factly, while being sensitive to Kristine's fragile mood. She should first continue to strengthen her leg and arm and complete the Gamma Knife radiation in her brain. After that, she can either explore a new chemotherapy option (Gemzar-Taxatere), which would give her "more time" (with a 50% likelihood of some success), or let the disease run its course. Kristine remained stone-faced and relatively quiet during the discussion. The reality is that this cancer is aggressive and there are no good options to stop it only those to slow its progress.

Kristine's Gamma Knife procedure went without a hitch on Wednesday. The latest MRI did not show any new lesions in her brain. The one tumor that was intended to be treated had grown rather rapidly, however. According to Dr. Lee it had grown to the size of a "juicy raisin" in just two months. The doctor and Kristine collectively opted not to treat the area where the first tumor was removed from her brain. There was a slight risk that Kristine's physical progress could be set back by doing so, a trade off that did not seem to make sense simply for precaution. Instead we will keep and eye on the area through regular check ups.

The news this week has been mixed, but hard to handle. Kristine and I regularly feel overwhelmed and dejected about the future. Nonetheless I can't help but think that things will turn in a positive direction and that through a relentless hope and a stubbornness to BELIEVE with certainty, Kristine will raise above this disease.

Goldilocks

Kristine's first week at home went pretty well especially compared to her difficult first day. The nights have remained restless as Kristine struggles to stay comfortable for more than a few hours. Since she can't change positions easily herself, I am called to duty -- to turn her on her side or back and move her stiff arms and legs. The first three days we changed beds and rooms each night. The first night we didn't have any success in our own bed, which Kristine thought was too soft. So we tried a harder fold-out sofa option in our den, but that was too hard. We finally ended up in our guest room where, although not just right, the bed provides an adequate level of firmness and comfort.

Kristine's mama bear and papa bear came in over the weekend to spend Thanksgiving with us. They plan to stay for another week to ease Kristine's transition into the next stage of her rehab. They will also provide support through some critical appointments Kristine has this week.

On Tuesday, we will visit Kristine's oncologist for a follow up visit and to discuss the next stage of her treatment. Although we know what the doctor will offer in terms of treatment options -- a new chemotherapy drug that has proven more successful than previous drugs against sarcomas -- I can not say with any certainty how Kristine wishes to proceed. Recently, she has been skeptical of the raw diet but continues to be critical of chemotherapy. I am sympathetic to her struggle with this difficult decision as there is no perfect porridge. To complicate the matter her right shoulder has recently begun to present swelling and hardness, a symptom similar to the one that presented 2 years ago, when Kristine first found out that she had cancer. This new symptom has been weighing heavily on all of our minds these past few days.

On Wednesday, Kristine will have her Gamma Knife radiation. The procedure is out-patient and non-invasive. It works by shooting over 200 beams of low grade radiation at very precise points to eradicate the tumor. The point of the beams' convergence create a very intense grade of radiation that kills the cells at that point. This methodology allows the radiation to destroy just the tumor cells without damaging the surrounding tissue as with standard radiation. The only side effect could be some temporary motor instability that may not occur for several months.

Kristine and the rest of are, as always, taking things day by day. We are hoping and praying that some good news is on its way and that maybe there is a solution that will turn out just right and let us get back to something resembling normal lives.

A Tough Homecoming

Kristine came home around noon on Saturday. It was a tough day for her. Her leg and arm were stiffer than normal causing her a great deal of discomfort. She was also very emotional throughout the day. All of this was brought about by the active day she had on Friday, the last day of in-patient rehab, coupled with the stress of managing her new surroundings.

Saturday night was difficult for both of us. Kristine's discomfort continued into the night. We had not had a chance to fill her prescription for sleeping medication, which she had become accustom to over the last month. Kristine woke up about every thirty minutes, and I with her, to change her position, go to the bathroom or stretch and move her stiff and cramped leg and arm muscles. By morning we were both hoping that the days ahead would be easier and that we could settle into a workable routine.

Home for the Holiday

Kristine and I met with the rehabilitation team today for a "family meeting." Kristine's mom also joined via conference call. We discussed Kristine's progress and plans for migrating her back into the real world. The doctor and the physical therapists all felt strongly that Kristine was ready to move to a day therapy program and that doing so would be good for her progress.

The plan is simple -- of course, in practice there will be tons of obstacles with which to contend. Kristine will conduct her physical therapy (PT) at home on Friday with her current therapist, Mike. This will allow for an even more practical framework and context to navigate through daily issues around the house. On Friday, she will move back home after 28 days in in-patient rehab. They originally planned to keep her over the weekend, but we all felt it best to start adjusting to home life while I had two full days off and since weekend therapy is generally a source of frustration for Kristine anyway.

The following week Kristine will not have therapy due to the holiday. We will be forced to adjust to some challenging circumstances. Fortunately, her parents will be back in town for a little over a week to help out. The following week, Kristine will transfer to a day rehabilitation center where she will be given more intense therapy from 9am to 3pm five days a week. The team believes that based on her current progress she will likely complete this phase of treatment within 2-4 weeks at which time she will continue a lighter form of therapy only a few days a week.

The rehabilitation team, and specifically the social worker, are helping to solve some of the other logistical details (e.g., Kristine's very own wheelchair, a specific type of side-raise commode, a shower seat, etc.). They are also exploring transportation options to and from day therapy for the weeks following Thanksgiving. Apparently is not the easiest service to lock down, but I have to believe that we can find a private service on our own, if necessary. We may have to rely on friends for transport help though until we get something set up.

We had considered moving Kristine out to Texas to live with her parents for a few months. There is a good rehab center relatively close by, she would have her parents' full attention and their house doesn't have stairs. The trouble is there's still cancer to deal with, so we need to remain in the area for doctor visits and potential treatment. For now it looks like we will remain in Philadelphia and do the best we can.

Shop 'Til You Walk

Kristine's mother left for Michigan on Thursday to help Jim (Kristine's father) close up their home. They will be coming back to Philadelphia in a little over a week before their annual migration to Houston for the winter months. It will be good for Connie to get a little break from her daily ritual attending to Kristine at the rehab center. Collectively, the days can take their mental toll.

It will not be easy for Kristine to adjust to the absence of her mother who has played the role of full time day-nurse for several weeks now. Simple tasks like getting dressed or going to the bathroom require assistance as she has still not gained any movement in her left arm. Her arm must be supported due to subluxation (partial dislocation) at the shoulder joint. This is a source of discomfort and frustration for Kristine as she struggles to keep it in position without someone's help. Additionally, most of the options that have been explored (different types of slings and tapes) are only partially successful and quickly become uncomfortable.

To ease Kristine's anxiety we have a transition team lined up. Her cousin Cris came in from Texas this weekend (although "cousin" doesn't begin to describe a relationship that is better characterized as a close friendship). She has been keeping Kristine entertained all weekend with laughter, companionship and massage to her paralytic limbs. Next weekend two of her good friends, one from San Francisco and another from Maine, will be in town to keep her spirits high and provide encouragement. Both Alison and Leigh are longtime supportive and positive forces in Kristine's life.

Of course, in addition to those traveling in from out of town, Kristine's free time during the week is pretty well occupied by visits from her loyal supporters and friends from the area -- visitors that will be especially important this week. Friends have established their time blocks for weekly one-on-one meet ups. And before anyone leaves they are sure to confirm their next visit for fear of losing their time slot. It is ironic that while we attempt to show our support for Kristine, and people in situations like her's, through visitation and a display of compassion, we often have as much if not more to gain from the experience in the sense of humility and purpose that it provides us.


The movement in Kristine's leg is slow but progressing well. Her physical therapy sessions focus largely on leg strengthening exercises, standing balance and assisted walking. She has made great progress in her ability to swing her leg out and, with some help, has even been practicing on stairs. This weekend, after mentioning that her therapist thought a shopping cart would be a helpful tool as a walking aid, our friend Simone disappeared only to return a couple hours later with a shopping cart donated by the Home Depot. The cart was put to use right away helping Kristine to rack up some rapid walking distance that a traditional walker would not have allowed. I shutter to imagine the additional progress she could have made had the shopping cart been in a mall or DSW.

This week we should have some more details on timing of the next phases of Kristine's physical therapy. This includes how long we can expect Kristine to remain in in-patient care before she transitions home and to out-patient therapy. It is this transition that will undoubtedly be the most difficult. Next Monday the 24th we have back to back appointments with our oncologist and neurosurgeon. These meetings will provide more detail around Kristine's potential next steps for treatment, tackling some of the other medical concerns that have taken a back seat to more immediate issues.

Kristine's Anatomy

I have to be honest, I don't get much sleep these days. I've been back to work for a couple of weeks now. I go in a little later than I used to in order to catch some extra sleep in the morning, but early nonetheless. Kristine's mom is up early as well. She heads over to the center to sit with Kristine and help her through the day from 7:30 to around 5 or 6. She does get a break here and there when one of Kristine's friends stops by or she goes into physical therapy. I take the evening shift from around 6 to 11 or 12. I then come home, walk the dog, post on the blog if I have a minute and go to bed, lying awake until my mind calms down enough to fall asleep.

When I'm at the center Kristine and I talk about our days, while I message her legs upon request. We occasionally watch TV and on Thursday Kristine likes to watch Grey's Anatomy, a show about an overly dramatic Seattle hospital with incredibly unrealistic but I guess entertaining plot lines. I bring this up, firstly, because I'm amazed that anyone would ever want to watch a show about surgery after just having had major surgery themselves. Secondly, the plot lines in the past two weeks' episodes have hit especially close to home. Last week a 10 year old girl was transferred from one hospital to another due to an inoperable Leiomyosarcoma -- the same rare cancer that Kristine has (apparently Leiomyo- is now a hot TV drama cancer). This week a woman had a brain tumor that was causing paralysis and had to be operated on. If you ask me who needs TV medical drama when you have Kristine and her blog.

I'm going to try and get to sleep.

P.S. Thanks for all your great responses on the blog. They really keep us going.

The Great Escape

This weekend was defined by two highlights for Kristine, an empathetic friend and a rebellious adventure. Kristine's friend Erica that she met at Hippocrates stopped in Philadelphia for the weekend on her way home to Florida. You may be familiar with Erica, her support contingent has flooded Kristine's blog in recent weeks with well wishes and encouraging words (those Iowans certainly know how to spread some Midwestern kindness). Erica was returning from Iowa where her parents live and where she has been receiving treatment for brain cancer. She has had to put her chemotherapy treatment on hold though due to an enlarged heart caused by the chemo drugs she's taking. Her friend Jody joined her on the trip, taking a short break from her responsibilities at home to help -- Erica occasionally has seizures from the tumors in her brain so flying alone can be a bit dangerous.

For Kristine, Erica is probably the one person she knows who can truly empathize with her about what she's dealing with and feeling. Their conversations were both sweet and bitter. On the one hand Kristine was able to release some of the ire and frustration she has been feeling with someone who is experiencing similar trials. On the other hand it's exhausting to tackle so many complex emotions in a short amount of time. I think any amount of time she spends talking about her situation is positive and cathartic, a healthy way to heal the emotional wounds that will undoubtedly linger for some time.

On Saturday, before Erica and Jody arrived, Kristine decided she wanted to get some fresh air. The rehab center allows its patients to be wheeled outside as long as they are accompanied by a family member and stay on the same block as the rehab facility. Connie, Kristine's mom, wheeled her out and around the city block. But Kristine, being the rebel child she is, wasn't entirely content with just going around the block -- she wanted more. Specifically she got it in her head that she wanted to be wheeled home (we live pretty close by), sit on our couch and pet our dog Rufus. Connie rightfully was not comfortable going any farther than was permitted by the staff so they went back up to the room. But Kristine's defiance was only further stoked by the center's rules. If there's one thing I've learned about Kristine over our almost 9 years together it's that being told she can't do something only intensifies her desire to do it anyway. She waited until I got to the center and cajoled me into being the accomplice for her escape.

I could tell what it meant to her, so we set off for home while Connie waited back at the center. We navigated over the bumpy and often jolting cement and brick sidewalks of Lombard Street until we reached our house. There are four steps into our 19th century row house, each one an individual challenge that gave us both a taste of what we can expect when Kristine returns home in just a few more weeks. She sat on the couch and said hello to Rufus, petting his head that rested confused on her lap. She asked me to sit beside her and gently placed her head on my shoulder before she broke into tears. She said nothing until the tears stopped and then as if she had not been crying at all looked at me and said, "Thank you. This is the most normal I've felt in weeks." And then with little hesitation she motioned to leave. We shuffled to the front door, Kristine moving her right leg as I shifted her weight and nudged her left foot forward. At the doorway there was a strong apprehension to the thought of shuffling down the stairs. After a near misstep on the first stair down, I lifted Kristine, placed her in her wheelchair and we headed back to the center.

Keep Phighting!

Just a quick update to say that Kristine is doing great. She enjoyed the floor bike pedels so much the other day in physical therapy that she has started going down the hall to the "gym" to pedal away in the morning. She also had her staples removed from her head. They looked a lot more intimidating in her head than out.

I also thought I'd give a shout out to the Philadelphia Phillies after their big World Series win. The car horns were sounding off all night in the city. It seems like it's a good year to be in Philly and overcome the odds. Keep up the good philly phight 'stine, we're all rooting for you.

Turn the Beat Around

Kristine's state of mind took a 180 degree turn for the better today. She is bright and alive again -- joking, laughing and smiling. It was amazing to see a more familiar Kristine shining through the second I walked in the door. It's not clear what helped her to break through the depression or how long this positive mood will last. Her physical therapy session may have helped. Kristine used a floor pedal bike that allows one's nonfunctional leg to move in a reciprocal motion powered by one's strong leg. She lit up just talking about the experience as it made her feel a little closer to normal. She was also able to move her leg a little more in a sitting position, pushing it an inch farther forward and pulling it back into its original place.

Kristine even joked about her condition with some self deprecating humor. She said that she should have t-shirts made that say, "left legs are for losers." We also joked about a comment she made several days ago in the hospital. While watching Britney Spears' new music video on VH1, Kristine said, "if Britney can make a comeback so can I." I think she can probably find better inspiration, like Gloria Estefan who turned her own beat around when she was paralyzed after a bus accident. Regardless, Kristine seams to have regained her will to live and fight to rebound from this little set back. Now we just need the neurotransmitters in her brain to reconnect and get her muscles moving again.

Up for Visitors

The first real day in physical rehab was a little hectic. The center was short staffed today so therapists were covering for each other. Kristine got in a really good session in the afternoon though. She worked on standing with limited aid from the therapist, strengthening her core abdominal muscles to regain balance while sitting up (surprisingly very difficult) and pivoting into her wheelchair. The therapist commented that she was doing great and that it often takes patients weeks to display as much control as she did in just her third day. This is still a long road though when we are talking about regaining the ability to simply sit up straight without falling forward.

Kristine met with the neuropsychologist this morning. It seamed like just the short 30 minute talk helped to clear her mind and set her at ease. Both the psychologist and the primary physician agreed on a change to Kristine's medication schedule that promises to better manage the sudden and painful leg spasms she has been getting and the anxiety that is inhibiting her mood. Tomorrow will tell.

The psychologist also agreed that having friends into visit would be therapeutic. Early and late afternoon look like they will be good time blocks to visit during the week since Kristine is not in therapy (weekends will likely be more open). If you are interested in visiting please text Kristine's phone or email me and we will coordinate a time.

A New Week Ahead

Kristine moved into her room at the physical rehab center on Friday. The center is brand new, remodeled from the hospital that had previously occupied the space. It's design utilizes modern accents that are more hotel than hospital and the staff has been extra helpful and hospitable. Kristine's mood changed for the better once she settled into the new location, partly a result of the new, calmer environment but mostly due to being out of the hospital after 9 days.

Since we checked in Friday afternoon we essentially got the weekend staff. As a result Kristine's rehabilitation schedule was limited for the first few days. The physical therapists were able to work with her for about an hour on Saturday and two hours on Sunday, short of the approximately three hours of therapy per day that she can expect during the week. Kristine has been getting cramps and spasms in her functioning right leg as the muscles shorten from inactivity. The pain has been coming on more frequently and has grown more severe. Because of this pain in her leg she has been eager, if not impatient, to start moving her body regularly. The pain has also exacerbated her anxiety and depression.

We did have a chance to speak with Kristine's primary doctor here at the center on Friday before she left for the weekend. The doctor was able to give us some clarity on how long Kristine's in-patient stay might be. Based on her current condition and assuming she progresses normally she can expect to stay for about 3-4 weeks. The doctor and her resident explained that the major muscle groups at the shoulder and hip joints are often the first to regain mobility followed by the minor muscle groups in the fingers and toes. They also said that it is almost always the case that the leg muscles come back before those in the arm. So by all estimations Kristine's path to recovery is advancing as expected.

Kristine's father and sister headed back to Michigan on Sunday morning. Monday Kristine will begin a regular routine and Kristine's mom and I will start to work out a routine of our own. I have been staying the night in the hospital and at the center, but as you can image chair sleeping coupled with regular waking for bed pan duty is taking its toll. We all have to start trying to achieve some normalcy, "some" being the operative word. Our goal for this week is to reestablish control through more structure rather than reacting to whatever is thrown our way.

Just because you're losing, doesn't mean you're lost

Kristine has officially reached the end of her rope staying at the hospital now for a full week. Her muscles and joints are sore from being in bed for hours and days on end. She has become very depressed with her situation and sitting around inactive and dwelling on it just exacerbates her mood. The doctor was going to give her an antidepressant but has decided to wait until she can talk to the staff psychologist at the rehab center. This is, of course, preferable so that she can start on a comprehensive plan rather than applying the current ad hoc treatment tactics where every problem has a solution in pill form.

The good news is that Kristine has been cleared for transfer today. The cardiologist, Dr. Miles, is mildly concerned about her irregular heart rate. Concerned enough that under normal circumstances she probably would have left here with a pacemaker. Her heart pauses for seconds at a time -- anywhere from 4-8 seconds. An eight second or longer pause is enough to make her pass out. However, neither Miles nor Staddon feels that it is urgent to have the surgery when there are more urgent issues to contend with, like getting Kristine moving, walking and back in good mental health. Fortunately she will be under observation at the center for at least a couple of weeks.

Kristine has started to talk on the phone as long as she doesn't have to talk about herself too much. She slips into a better mood when she is engaged in conversation about other people's drama. She is still not up for visitors, but hopefully that will change once she has started rehab.

At this point we are just trying to keep her upbeat, distracted from the pain and moving forward toward the future. Stealing from the lyrics by the band Coldplay, "just because I'm losing, doesn't mean I'm lost, doesn't mean I'll stop." I am confident that Kristine will find her way and push ahead. She just needs more time to gather the strength and believe in herself again.

A Leg Up

Kristine's father Jim and I went on a wild goose hunt yesterday. We drove around the city in search of a delicious black & white milkshake. Jim nearly thought he had lost his mind when I dropped him off at 18th street and told him that Ben & Jerry's was just a block in the other direction. He must of walked up and down the block 6 times before I jumped out to validate that the location had closed. Desperate for a laugh I thought about driving up another couple of blocks and to repeat the whole scenario and mess with him a little, but thought better of it. We finally found what we were looking for at another Ben & Jerry's almost 30 blocks away.

Meanwhile, the neurosurgeon who conducted Kristine's brain operation, Dr. Lee, and his resident stopped by Kristine's hospital room. Dr. Lee asked Kristine how she was doing and then matter of factly stated, "Well, you will walk again." It was the first time that the doctor had been optimistic about the recovery let alone so flat out affirmative. Kristine, incredulously, said that this was hard to imagine given her current state of immobility. Dr. Lee's resident chimed in and said, "you can move your leg now." Silence fell upon the room with Kristine's mom, Connie, and sister, Stephanie, standing by. Puzzled, Kristine informed them that she had not and could not move her leg nor her arm. At this the doctor disagreed and told her to lift her leg off the bed. There was a pause. Her leg laid still. Then slowly Kristine looked down at her limb and lifted it up off the bed several inches. In disbelief Connie said to Kristine, "I didn't know you could do that!" Kristine replied, "I didn't either!"

Kristine broke into simultaneous laughter and tears the instant she witnessed her accomplishment and again when Jim and I returned with milkshakes to hear and see the story recreated. This is a badly needed catalyst to motivate Kristine forward. Dr. Lee did say that her arm may take longer but generally that she was progressing quite nicely. They are keeping Kristine in the hospital until Friday to evaluate her under the new medication for her irregular heartbeat. Then it's off to rehab.

Keeping Pace

In preparation for Kristine's transfer to a rehabilitation center, Jim (Kristine's dad) and I took a tour of one of the facilities recommended by our team of doctors. The center is within the Penn Health network and is located in the newly renovated Graduate Hospital (now called Pennsylvania Hospital at Rittenhouse). It is a brand new facility with spacious single bedrooms, private accessible bathrooms and brand new rehabilitation equipment. The staff is a mixture of those from Penn Hospital and the Hospital at the University of Penn so they bring a wealth of experience with them. The location of the center is also very convenient being within walking distance from our house. Kristine's parents, not being used to big city parking, are certainly happy about this feature.

Once Kristine is cleared for discharge in the next couple of days she will be on her way to rehab. But as is often the case lately we have more news to digest that could complicate her transition. It seams that Kristine's heart is beating irregularly, meaning that her heart is skipping beats and taking irregular pauses. As you can imagine this is pretty dangerous especially as she gets ready to exert more energy in rehabilitation. The doctors are not certain what is causing the problem. They initially believed that it could be related to the tumor that was removed from her brain or the surgery conducted to resect it. If it is directly related to the surgery Kristine would potentially need a pacemaker to keep her heart rate steady. However, as recently as this morning the doctors shifted a bit to thinking it may be a temporary symptom. For the short term she is on a medication called Theophylline (typically used for airway troubles in asthma patients but has a secondary or "off-brand" use to increase the heart rate). The MRI that Kristine has agreed to have (she has been resistant to a post surgical MRI) will give us more insight into just how serious the problem is. We are really hoping that this new development does not require surgical implementation of a pacemaker. There is a point were additional procedures become inhumane and risk sending Kristine over the edge psychologically.

Kristine's sister Stephanie flew into town yesterday evening. This should give Kristine some additional motivation to move forward. Today's goal: get her out of bed, maybe in a chair and playing a hand or two of cards.

Next Stop: Rehab

Not a whole lot has changed from yesterday. Kristine is out of the ICU and in a standard care room in the hospital. The neurosurgical team is happy with her progress and is recommending that she move to a rehabilitation facility in the next couple of days. They believe that she is in good stable condition and should begin her rehabilitation as soon as possible.

The rehab treatment will be comprised of two phases, in-patient and home care. Kristine will stay at the facility for the in-patient portion until they feel that she has reached her maximum rehabilitation point. This could take weeks or months depending on her progress. In the second phase, social workers will come to our house to establish a suitable long term environment based on Kristine’s status when she leaves in-patient treatment. I plan to do a tour of the two likely Penn Hospital facilities on Tuesday with one of Kristine’s parents. Both centers are within blocks of our house, which makes the transition that much easier. There is a chance that we will choose to do part of the rehab in Houston with Kristine’s parents. This will really depend on the speed and degree of her recovery. A long and less successful recovery will necessitate this route. We will just need to cross that bridge when we come to it.

Aside from the obvious physical therapy services that the rehab center will provide there are also a psychological services. This is becoming increasingly important for Kristine as she continues to question the purpose of fighting on and her fortitude and desire to do so.

More to come tomorrow.

Higher Tides

Even knowing what day or time it is has lost its priority for me and Kristine's mom and dad. We simply hang on to every moment, good and bad, remembering the past, reimagining what the future holds for Kristine and trying to understand the role we will play. We have all run our personal ships aground, hitting rock bottom both physically and emotionally and doing our best not to let Kristine sense our despair. But this morning higher tides fell upon us. Kristine, while being evaluated by the neurological team, wiggled her toes and nearly kicked the doctor over with her left leg -- extremely positive signs on her journey toward recovery.

Although we are cautious not to place too high an expectation on these recent achievements as she is not yet able to repeat them, we are nonetheless hopeful that this is the change in trajectory that Kristine needs to sail forward with confidence. From the minute she awoke from surgery she suppressed all hope, weighed down by a perception that permanent paralysis is her inevitable fate. But it is these small signs of potential that seem to have refueled Kristine's will to fight on. This is evident in the subtle change in language she has begun using and the attitude she has begun to display. She has started referring to her limp left leg as her "heavy leg" instead of her "dead" one. She grabs her limp arm with a little less frustration and a little more determination, shaking it to come alive.

We still have a long way to go yet. A huge psychological barrier sits between Kristine and her recovery as she struggles to cope with her current physical handicap and the cancer that still remains untreated in her body. But as we often remind ourselves in these times of hardship you have to take each moment one step at a time and let the small winds of hope set our course.

Edemame

Kristine is doing OK as of today. She finally was able to get sleep after a long night of restlessness. She also got some solid food in her system (edemame, miso soup, steamed veggies and a piece or two of California roll). It wasn't raw but she has suspended the diet until she can get her strength up and get better.

She had physical therapy today. They were able to get her to sit up on the side of the bed, stretch her legs, arms and neck, and begin to balance herself. There is still no progress in the movement of her left side. However, the neurological team said she has muscle tone in her left limbs and were encouraged by some brief flexing they had seen in her leg and arm.

Kristine is still dealing with a lot of resentment toward and anger at her situation and the prospect of being paralyzed. This will hopefully change with time and as she gets stronger.

Not much new to report but thought I would provide a quick update.

Play Your Hand and Snag A Big One

Kristine was a little more aware and lucid today. She's still throwing out sarcastic comments to her family and the hospital staff. Today though she was equipped with some new emotions, anger and indignation. And she felt compelled to channel these emotions into rants of irritated monologue toward any staff member who was unfortunate enough to enter. She had given a piece of brain that she was not happy to lose and now she was giving them a piece of her mind about it. One responder to the blog made reference to hurricane Omar that hit the US this week, well hurricane Kristine touched land today as a category 5.

She was told by Dr. Staddon in the morning, before we had made it to the hospital, that she may not regain movement in her left side. As you may recall from the last post she was not aware of the increased risk of paralysis that developed after she was sedated. From this point forward she was angry and bitter about her situation, and rightfully so. Here is a woman who has bravely fought so hard through 6 rounds of chemo, open heart surgery, chemo related hallucinations, 37 rounds of radiation, and now brain surgery. And after all this she is now faced with the prospect of being paralyzed on her left side with additional tumors in her brain and lung with which to contend.

As the immediate support team, Kristine's parents and I have been forced to find an appropriate balance. We are very aware that she is fresh off the operating table on medication and needs time to come to terms with her plight. But we also don't want her to fall into any grade of depression that prevents her from making progress toward regaining her left motor skills. We have come to the conclusion that the best way to do this is NOT to tell her that she is strong and that she needs to be positive, this just pisses her off more. Instead we need to prop up her ego, remind her of the people who care so deeply for her and her fighting spirit and, most importantly, make her laugh.

I did attempt to motivate her with a lighthearted analogy from a Becker card playing adage. Kristine's father Jim seems to always win a disproportionate number of card games. And the apple doesn't fall from the tree -- Kristine is always beating me and others by double digit numbers in card games. Jim follows the mantra that you can only play the hand that you're dealt, so you just hope to "snag" a good card. Well it never fails, both Jim and Kristine will grumble and moan at their bleak chances of winning with a lousy hand and then, out of nowhere, they "snag a big card." For me this is a perfect parallel to Kristine's current situation. And just like in cards, you can't snag a big one without always believing it's the next card in the deck.

I think if we can just get her through this initial and completely understandable stage of disappointment and frustration, we will again see the Kristine that we know and love with a voracious appetite for life and maybe even a desire to win a few more card games.

_________________

Shortly after I wrote this post from home Kristine called me from the hospital. She was a mess. She asked me to come stay with her for the night. I agreed as long she asked the nurse. I'm sure the nurse agreed in hopes that Kristine would calm down and get some sleep. I spent a good part of the night trying to make her comfortable by rubbing her legs or moving her arm. She wasn't able to sleep all night. The idea of being paralyzed and still having to fight cancer is occupying her every thought and altering every idea about what her future will look like. The doctors do not want to give her medication firstly because they need her aware to monitor her neurological response and secondly because most options will lower her already low blood pressure. It's been a long night and I just hope that she can get some sleep soon to help her regain a more logical mental perspective. Saturday the physical therapy team will be working with her to get her up and moving. Let's hope for the best.

2 Days That Felt Like an Eternity

The events of last 2 days have been far and away the most difficult that Kristine and I have faced in our entire lives. I’ve not slept at all in over 41 hours so bear with me if my post loses some focus.

After leaving Dr. Staddon’s office on Wednesday evening we were frightened by the diagnosis of brain lesions, but also hopeful that the steroids would temporarily suppress the pressure on Kristine’s brain until we could fully evaluate the options. Kristine struggled to climb the stairs that evening to reach our 3rd floor bedroom. The left leg that she had just hours before lifted almost a foot off the ground now required my assistance to reach the next step.

We went to bed that night but never fell asleep, both of us admitting our fear of missing what could be a final moment together. Kristine struggled to get comfortable and became frustrated by her limited movement. There was a rhythm throughout the night of scared silence and calming conversation. At around 2 in the morning Kristine said that she could no longer move her arm or her leg. Twice I had to literally carry her to and from the bathroom and hold her steady on the toilet. The most heart wrenching moment for me came when Kristine said, “we should be prepared that this could go quickly,” meaning that the situation could be the beginning of a quick and final decline to the end of her life. At 4am as I rotated Kristine’s limp but rigid left arm in circles to maintain its circulation, I decided that this had gone on too long and call an ambulance.

In the ER Kristine’s situation worsened still despite receiving a higher dosage of steroid. Her left limbs began to lose feeling, the left side of her face began to droop and her head throbbed in pain from increased cranial pressure to the point where she would scream out clenching and shaking her right hand. From this point forward the entire day was a roller coaster. The neurosurgical team viewed Kristine’s scans from the previous day. They determined that it was critical to operate within the next two days to remove the tumor on her brain. Within days quickly turned to within hours as they became more concerned over the worsening of her symptoms.

Kristine headed for scans and to the operating table by 11 am. At the time we both agreed that the surgery was worth the limited risk – a less than 5% chance of any complications like permanent paralysis or infection. But shortly after Kristine had been sedated and begun preoperative preparations, Dr. Lee, our Neurosurgeon, spoke with me about their findings from the latest scan. A blood vessel had burst sometime after the previous day’s scan around the tumor. This caused the tumor to expand, blood to fill up around the brain and explained why Kristine’s symptoms had worsened over such a short period of time. Dr. Lee retracted the previous prognosis for a much more disconcerting one. He now said that, “the probability of Kristine regaining full use of her left side was now zero.” There was no other choice though but to continue with the surgery. The alternative, according to the surgeon, was that Kristine would fall into a comma and eventually die.

I was truly pained by this decision, but there is no doubt it was the right one. Kristine is doing great after the surgery. In fact, she has already tried to pull out her intubating tubes (I even warned them about this one from the last surgery) and resorted to calling the nurses, “stingy water bitches” because they will not give her more than ice chips. Nonetheless I am terrified of having to break the news of this increased risk and of her having to cope with paralysis (after all, Kristine does not do well with limitations). Dr. Lee did sound more optimistic after the operation, recognizing that she is young and could regain more movement in her arm and face with only a limited amount of impaired movement in her leg.

Hey, if there is one person I know stubborn enough NOT to give into even paralysis, it’s Kristine.