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.