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.

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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.

Roadblock to Recovery

This is Ryan and I'll start by saying that I'm taking back control of the blog, at least for the short term. This is in light of some recent events that I feel require me to debunk myths about Kristine's search for alternative treatments and to address some unexpected turns in her story.

Kristine has been experiencing some loss of motor control in her left leg and arm. Just prior to leaving for Ecuador she noted several occasions where something wasn't quite right. There was one moment where it was difficult to slip on her flip flop and a few others where she had lost her balance and walked into a door frame. She refused to give into what she categorized as a passing impairment of her equilibrium. Her motor skills worsened while in Ecuador. Her ability to walk and lift her left arm increasingly deteriorated. While some of the treatments she was receiving weakened her energy, it was another unexpected and unrelated culprit at work disabling her mobility.

As most of you know by now Kristine is home from South America. She arrived in Philadelphia at around midnight on Tuesday. She was the last to exit the terminal pushed in a wheelchair by an airport worker. She immediately broke into tears upon seeing me, a combination of emotions pouring out. After a long night of talking about the situation, Kristine and I agreed that it was best to see Dr. Staddon as soon as possible. This was a difficult decision for Kristine to make given her reluctance and fear of the solutions that Western medicine are likely to prescribe.

We saw Dr. Staddon at 1 in the afternoon. He performed some routine reflex tests on Kristine's left leg and arm. At that point it was not surprising that both limbs reacted abnormally. The doctor ordered an emergency MRI and CT scan of Kristine's head and neck. It was no sooner that both scans were complete that the Oncology office called us back to discuss the results. Although we could easily predict the outcome it was nonetheless unnerving.

The cancer that started in Kristine's heart and veins and later spread to her lungs, has now metastasized in her brain. There are two lesions (tumors in this case), one about 3.5cm on her right frontal lobe (behind the forehead) and another much smaller one on the right side of her cerebellum (the rearmost part of the brain near the base of the skull). These lesions have caused edema (or swelling) in her brain, which has in turn caused the loss of Kristine's voluntary muscular movement on the left side of her body (you might remember that each hemisphere of the brain controls the opposite side of the body). Additionally, the tumors have caused emotional depression, contributing to Kristine's stress and discomfort while in Ecuador and now at home. It is presumed that these tumors are from the original Sarcoma, the cells from which have traveled through the bloodstream to the brain. It is not thought to be from a new, brain specific form of cancer. This will be an important distinction when we later discuss treatment options.

Kristine is doing as good as can be expected. She is currently on Decadron, a steroid used to reduce inflammation. The drug is expected to eliminate her symptoms for the short term in the next few days while we consider treatment options. We are just trying to keep things light and positive. I will save the details of the potential treatment options for a later post (hopefully within the next day or two). We have an appointment with a Neurosurgeon on Monday morning to discuss his advice.

Ryan

A Sister's Visit

Hi there.

My name is Gretchen and I am one of Kristine's sisters. I just wanted to fill in a few blanks for all of Kristine's friends and family who have been patiently and not so patiently waiting for her next blog. I totally understand the frustration that you all have been experiencing since I too have been waiting for an update.

Before I begin, I would like to take this opportunity to thank each and everyone of you for all of the support you have given my sister over the many months that she has been enduring this constant roller coaster. I can't begin to express how much the love and support has meant, not only to Kristine, but to her family as well.

I met with Kristine last night at the Miami Airport. YES, SHE IS FINALLY HOME!!!! Even before her friend, Jane, had to leave Ecuador, Kristine realized that staying on her own was not a feasible option. The Oleander juice that she had been drinking on and off during her stay, had many of the same side effects that chemo had on her. It made her very weak and unable to do many things on her own, which made staying there unaccompanied very difficult. In addition to being weak, she is emotionally raw, crying at the slightest emotional encounter. This too is another symptom of the treatment she has been receiving. She has lost some motor skills in her left arm and leg. It is very difficult for her to maneuver herself in and out of a vehicle, up the stairs as well type her daily/weekly blog among other things. Hopefully, Ryan will be giving us some updates when he is able.

To say the least, my 2 hour visit with Kristine was not nearly long enough. It was very difficult for me to watch her walk away, not knowing when I would be seeing her next. Living far apart has been difficult for our whole family. We all wish that we lived much closer so that we could support not only Kristine and Ryan, but each other.

While she is still very weak, please remember that she is still the same strong-willed firecracker that will not ask for help even when she needs it the most. At this point in time, Kristine is in need of the same positive love and support you all have been delivering these past many months.

Thank you again.

g

It Is A Womens Right

The morning after I decided to go home, I started to feel relieved but at the same time so sad. I really felt like this was my chance at healing. I was still crying pretty constantly at his point. Every thought would set me off. At around 10am I received a text from my girlfriend Jane who I met at Hippocrates and she wrote that she wanted me to stay and that she was going to fly in to help me. I immediatley wrote back that it was too late and I had decided to leave. She wrote back again telling me not to give up and to think about it. I replied that I would think about it but my mind was pretty much made up. It took a lot for me to decide to leave. I really did not want to think about staying. I just wanted to put this adventure behind me and to go home to see Ryan and Ruffus.

I spent the afternoon in a state of depression. I could not stop crying and I felt like I was having an emotional breakdown. Before Julie left to return home she gave me the number to her friends Paul and Elona and told me to call them if I needed anything. I am still not sure what made me dial their number. When Paul answered I was crying trying to introduce myself. He immediatley put his wife on the phone and she asked what she could do for me. I really had no idea what they could do for me. She insisted that I come over to their house and have dinner with them and she would do a little treatment on me to see if she could help calm me down. (She is a licensed massage therapist.) The taxi picked me up and brought me red eyed to meet a couple I have never met before. I felt a bit embaressed by what their first impression of me would be like. I told her that and she responded that I was talking with my ego and they were glad I was there. She had clients and Paul was busy in the kitchen. I just curled up in one of their chairs and fell asleep for awhile.

Around 8:30 pm she finally had a little time to spend with me in her treatment room. She suggested that she could realign my chokras. I had a vague idea what that meant but was just grateful for the cozy massage table and the attention. She told me that everything in my body seemed really good except for my emotional chokra. Really? How did she figure that out? She told me that it was like a gas tank with holes in it and you could keep filling it but nothing would stay. She did some different things with oils and rocks and kept talking the whole time. The one thing she said that really struck me was, remember to make your decisions with your heart and not your mind and never make them out of fear. That is exactly why I was making this decision to go home. I mean how many times in my last blogs have you heard me say I was scared. I let this thought sink in over a wonderful dinner that Paul made from scratch. By the time I was leaving to go home I felt so much better. I checked my phone and there was a text from Jane asking me what I had decided. I wrote back that if she was willing to come and help me I would stay at least another week and see how it goes. She arrives in three hours.

I figure if I still decide to come home at least I would have a week in Ecuador with one of my friends. I have not even been downtown yet. Does that sound like me? Fly all the way to Ecuador and not even experience what it is like. That goes against every thread of my being. I still may come home early but I will decide when I am calm and thinking straight instead of a scarred little puppy with her tail between her legs. I know many of you are scared and just want me to come home now and I appreciate you being worried about me. If the shoe was on the other foot I would be worried about you. Today I chose not to be scared and to think with my heart. I know then I will make the right decision. I have always lived my life that way and I must stay true to myself so I have no regrets. Thank you everyone for your support! I love you all.

Kristine

From Bad to Worse

Just when I didn't think things could get any worse, they did. The doctor I am here seeing treats all kinds of illnesses and he has contracted Hepitiitis A from one of his patients. With that being said he is pretty much out of the loop in being able to treat me. I am just hoping that I did not pick it up while I was spending time at his house. You can only get it by using the same utinsels or maybe kissing. I did use one of their glasses and had a green salad at their house the first day I arrived and they are not the cleanest of people. Needless to say I am worried. I can not afford to get any other diseases at this point.

As you all know one of my biggest sayings is to trust life and right now I have to take that to heart. This is not working here and I am going to come home. Neville tells me that I can do 60% of the treatment at home, hopefully that will be enough. I am saddened to leave because this was my ace in the hole. It scares me to give up on this option and return home to traditional doctors. However, I am more stressed right now then I have been in the last two years. I know that is one of the worst things for someone with cancer. I have yet to pick a time when I am leaving probably by the end of the week sometime. I have just made this decision in the last hour and have yet to even call the airlines. I will keep you all posted. Love,

Kristine

The Truth of The Matter

I am getting a lot of texts from people asking me how I am. I am not sure if I should write about what is going on because I know so many of you are worried already. I am not going to sugar coat this situation. It is extremely hard and I am stuggling. I am still very positive that this can work but there are a few obsticles that need to be figured out. I will not give up that easy. It has not even been a week yet. So hold on to your panties and don't freak out too much.

The Oleander treatment never made me feel nausous but I did have some crazy side effects. Late on the first day, I started having muscle spasms on my left side. Both my leg and arm would jump about 6 inches and would not stop for about two minutes. The first time was really weird and I just ignored it and kept doing my thing. The next day I continued the treatment and then the spasms started again. Now I started to get concerned. I walked over to see Neville but he was not feeling well hmself and his wife went to talk to him about what was happening. He had said he had never heard of such symptoms and I should stay the course and just cut back my intake by 50%. When I got back to my room the spasms continued and I started to finally get a little freaked out. I was also feeling extremely weak and mentally exhausted. Very similiar to how I felt the second week of my chemo schedule. The simplest thoughts would make me break down in tears. The biggest difference was I was alone. I stopped the treatment cold turkey and started feeling better yesterday. I went to the local mall and saw the movie Stepbrothers. It was exactly what I needed to laugh a little.

I can not even begin to tell you how many people offered to come and help me down here but I refused and thought that my girlfriend Marie and I would be able to take care of each other. Marie has decided to wait on coming to Ecuador because her scans are coming back excellent. I don't blame her for wanting to waiting I probably would have done the same thing if I were her. I am starting to realize that doing this alone is next to impossible. I have already reached out to my friend Jane who is a flight attendant and can fly stand by sonner then later with out having to pay some crazy plane fare. My mother has offered again and again and to be honest she would probably not worry so much if she was here. I am running out of time on this computer so I will write more tomorrow with an update. Big love to you all and thanks for all of your good vibes. Love ya, Kristine

Taking It All In

This has been a crazy experience to say the least. I have been pretty much just going by the seat of my pants, which I am pretty good at. When I arrived the first night I stayed with my friend Julie in a bueatiful house in a private area of Guayaquil. The next day I was to move to a B and B near the doctors home. The problem was it was sold out. When we arrived the doctor told me that he had many friends I could stay with. At that moment 2 of his friends came by and told us about another B and B only 5 blocks away. They immediatley took me over and set me up. They were so nice to help a complete stranger. To be honest everyone I have met has been extremely nice. So The room is small but clean and the area seems pretty safe.

That afternoon Julie and I met with the doctor and she took off around 1pm and left me on my own. I then sat at his house for the next 5 hours while a constant stream of patients came and went. In between patients he talked to me. He believes that cancer in part stems from unresolved issues in life or conflicts with other people. However he also told me that the cancer I have is so serious that I must have killed someone. (I have not, just in case you were wondering.) This is just the beginning of some of the theories he has about cancer. I could go on and on but I think you are gettng the point. My friend Julie told me that I need to just take everything he says with a grain of salt because he is really brilliant and has helped her to be rid of her cancer. I will agree he has a lot of knowledge on natural ways of healing. It just comes out a little scattered.

Right now I am really tryng hard to not make a knee jerk reation and come home on the next plane. Today I have finally started my treatment with oleander every hour. It is supposed to make me feel sick to my stomach at some point and then he will know how strong the cancer is in my body. It is about time for my next juice/oleander so I better get going. I hope I didn't freak any of you out. I am really O.K. Just trying to adjust to this situation.

Hola from Ecuador

Just a quick note to let everyone know I made it safe and sound.  We were about 2 hours late coming in and my poor friend Julie was patiently waiting for me.  I am staying with her tonight in a gorgeous private house.  Tomorrow she is giving me the tour and I will find my own accommodations.  There is a chance that I will be able to come back and rent a room from her friends at some point but they are out of town right now.  

Just wanted to put everyones minds at ease and let you know that I am fine and that the beginning of my Ecuador adventure has officially begun.  Until later,

Kristine

20 Minutes and Counting

Leave it to me to wait until the last minute! As many of you know, I am off to Ecuador today. For those of you who don't know, sorry about the last minute surprise. Just keeping things interesting here.

After my last scan that showed the cancer had spread to my lungs, I had heard about a holistic doctor in Ecuador from one of my friends that I met at Hippocrates. She had gone down to see him for six weeks and had really good results. Having an adventurous side, I thought why not. No one will ever accuse me of not tyring everything. I booked my ticket and have been anticipating this day for a while now.

I would have talked about it earlier but to be honest I think I have been a little bit in denial. Throwing the benefit for Erica really kept my mind off of this trip. The details are a little bit of a mystery right now. I know the doctor works out of his house so it is not a fancy facility or program. My friend Julie will be overlapping her trip with mine by one day so she will show me the ropes before she returns to the states. I am set to return on Nov 6th if all goes well. At this point I am just trusting life and my gut instincts and going for it. If I don't like it I can always come home early.

I am not going to lie. I am scared. Not of the doctor or the treatment but more of the time lost with my family, friends and Ryan. I do have a really positive attitude, but I am also realistic. If this doesn't work then I miss out on 6 weeks when I could have been here with all of you. Life is fleeting, especially for a cancer patient. (Please don't make any comments like, "don't think that way and you can do it..." BLAH BLAH BLAH!) I still make my own diagnoses everyday and believe in my heart that I can beat this but no one really knows what will actually happen. It is all a mystery -- similar to this trip I am about to take. Caring friends have been asking lots of questions for the last three weeks and to be honest I made up half of them to make them feel better about me going. I am definitely rolling with the punches. You have to admit, it is pretty exciting? When is the last time you just got on a plane and had no ides where you were headed. It should be interesting so stay tuned. I plan on writing as often as possible and I will be checking my e-mails as often as I can, so don't be shy. I also have unlimited texting on my phone so I can text for free. Can't wait to tell you all of the stories. Sending Big Love to all,

Kristine

Paying It Forward

Our little benefit for Erica was a big success. Of course, it is because of all of you who so generously donated to support her. It is amazing how much a little from everyone adds up fast. When I told her about your total contributions she broke down in tears. She just kept thanking me for putting this together, but honestly I am just doing what others before me have done for my benefit. I know how overwhelming it is to have people who don't even know you stand up and give support. I told her that someday when she was well she could pay it forward and do the same for someone else. Then she will understand why there is no thanks to give. It really is better to give then to receive. I guess I should be thanking her.

Erica has written a thank you letter that I have included below:
_____________________________

Dear Friends,
From the bottom of my heart…THANK YOU ALL for attending tonight’s event. On behalf of me and my husband, Tim, we are truly blessed and so very appreciative of your support and complete selflessness and generosity. It completely humbles us to witness so many people willing to “pay it forward” and it certainly honors us to have met, know and love Kristine, and be able to call her our friend.
As of today, and following 3 rounds of chemotherapy, my numbers regarding my cancer are decreasing, which is indeed welcomed news. My Doctors would like to see me continue with a few more rounds of chemo and continue with more radiation treatments. I am contemplating my options as to how I would like to proceed. I am trying my best to stick to my raw/vegan diet, though I sure do wish I could be with you all tonight, as it sounds like the restaurant you are at is FABULOUS! YUM!
Overall, I am feeling okay. I get very tired, very easily, but I know having a good attitude and positive outlook is at least ½ the battle, so I do the best that I can to keep my chin up. What a fantastic role model I have to look to in that department; in Kristine, herself. She is simply an amazing woman inside and out. Her ability to keep her sense of humor and determination is a true testament to her strong will and character. She inspires me every single day, as I am sure she does you, as well. We are ALL better people for knowing her and having her in our lives. She is an Angel sent from Heaven above, no question.
Please enjoy your evening of friendship, food and fellowship, and please accept this as a small gesture of our sincerest thanks and appreciation from both myself and Tim. We will never forget your kindness and hope one day we may meet to thank you, in person. MAY GOD BLESS YOU ALL!

What Goes Around Comes Around

Being a cancer patient can be a very interesting journey. I have been extremely lucky to have made many good friends along the way. I know I have shared with you some of my friends stories and news. Today I will do so again.

I met my friend Erica at Hippocrates. Something just clicked between us right away. We had the same attitude about our lives and our cancer. We chose to laugh and be happy in the moment. I think we spent hours just comparing our funny cancer stories with one another. We talked about writing a book together about how cancer doesn't have to be so doom and gloom and how sometimes you can find a silver lining even in the worst of times. Whenever we would fall off the "raw" bandwagon we would compare who ate the worst thing. You ate lamb chops??? Well I ate curly fries!!! We would laugh and realize that no one is perfect and in each other we had a real support system. Someone that understood. We have taken each others news harder then we have taken our own. We each put on our brave faces when it is happening to us but when it is happening to our friends we feel helpless. Probably very similar to how all of you feel watching me go through this experience. It becomes too real.

I recently received a letter in the mail from Erica's family. She is fighting so hard and she is seeing lots of changes. Some good ones. Some not so good ones. I can hear her doctors now telling her that chemo is the only way. I know because that is what they say to me. I also know that her decision to restart chemo was extremely hard. I know in her heart that it is not what she wants but she will do whatever it takes to win. Who wouldn't? Unfortunately chemo isn't the only thing that Erica needs to worry about. The past two years have been extremely tough on her family financially. They are doing everything to keep it together. The letter I received was a call to help lift the financial burden that cancer has created. I immediately got my check book out to help. Before I started to write, I realized that I could do more. When my financial burden was heavy I didn't even have to send a letter. My friends and family threw benefits to make my life easier and I didn't even have to ask. I really feel like it is my turn to help someone else.

With that being said I have decided to throw a benefit for Erica on Tuesday September 23rd. I have only a couple of weeks to pull this together and I hope that it is a great success for Erica's sake. We have created a separate site for this event where you can buy tickets or donate to the cause (see below for the address). We will be doing a silent auction to raise funds as well. If any of you have something that you would like to contribute to the auction, it would be greatly appreciated. You can contact me directly on my personal e-mail. I will thank-you in advance for all of the love and support. And to Erica who is reading this, stay strong my friend. We will beat this together, laughing the whole way of course!!

Kristine

http://benefitforerica.blogspot.com/

Where To Start?

Today I am not happy. I am extremely frustrated. I received bad news from Dr Staddon on my latest scans yesterday. I have to say I was blind sided. I was really expecting good news. My lingering dry cough has diminished to where I barely noticed it anymore and I have been feeling amazing. I really expected him to say that things looked great. Instead I was told that there are several new nodules on my lungs and the ones that were there before have increased in size. Now we are talking millimeters for the new ones and centimeters for the older ones. Not the news I was expecting.

For the first time since I have been diagnosed, I am angry. I feel like I have changed my life dramatically with my new diet. I am constantly doing shots of wheatgrass and green juice. I lug that juicer with me everywhere I go, thinking it will make the difference. I drive 45 minutes every week to buy 5 pounds of wheatgrass from a grower. This lifestyle is time consuming and limited. For the last month I have fallen off the raw diet thinking that what I was doing with the juicing and wheatgrass would be enough. Now, I somehow have to find the motivation to get strict again. I want to be able to go raw a %100 but I am not sure if I can do it.

Today when I was complaining to one of my friends and talking about giving up this idea of going raw. She reminded me that maybe my news would have been worse if I had not been taking care of myself the way I have been. She is right. I just keep thinking about my friend Andrea that never got any good news from any of her scans. It could be worse. It can always be worse. However, today I am going to be angry, pissed off and mad at the world. Today I ask, WHY ME? I just want my life to be normal again. Tears of frustration are running down my face as I write.

One thing I do know is that whatever I decide I won't give up without a fight. It is a built in Becker trait. I won't go down that easy. Maybe this anger is exactly what I need to get serious again. I do have one more holistic option in my back pocket. I will tell you about that later. I told Dr. Staddon what I wanted to do and he was as supportive as I could have hoped. He wants to start me on a new chemo regime pronto. However, he did say I had some time if I wanted to try something else. He, of course, had no other options except chemo, chemo and more chemo. That is still my last resort.

For now, please don't worry about me. I will win. There is no other option.

Kristine

Fast, Faster, Fastest

Mentally preparing for my upcoming scans made me start to think about everything or anything I could do to help get positive results. On top of my extreme diet there are other ways to help my body heal itself. One of those ways would be fasting. I have yet to try a fast for a number of reasons. First of all I didn't want to lose any more weight. The other reason is that you should stay pretty mellow during your fast and I always have way too many plans. The last reason and probably the most difficult reason is the no eating any food thing. I just didn't think I would make it through even one day without eating. With all of this on my mind I knew in my heart that I had to try everything to get rid of this pesky cough and heal my body. So, I put aside three days on my calender and made no plans but to sit around and watch funny movies, read books and talk on the phone. For 72 hours I would eat nothing. I would nourish myself with green juice made from cucumber, celery, Kale, broccoli and sprouts. Of course I also had my wheat grass shots.

The day before I started I went to pick up my wheat grass from Loretta. She has been living the raw lifestyle for many years and has also attended Hippocrates several times. I told her that I was going to start a fast and I must have sounded unhappy about it because she told me that I needed to be excited about the fast and to remember the good it would do my body. She told me to celebrate the three days and to enjoy not having to worry about food. I loved that exchange and I immediately changed my attitude. I embraced the idea and I started to look forward to how I would feel.

Before I go any further I just want to quickly explain to those of you that don't understand why a fast is important. I like to explain it as a spring cleaning for the body. When your body doesn't have to digest food it is left with lots of energy to heal and to clean out unwanted cells. It also helps to clean out the bowels where people can have several pounds of sledge compacted in their bowels. (I know too much information right?) I remember years ago in San Francisco when friends of mine would do cleanses or fasts and I thought they were totally nuts. Now I can't help thinking if I would have given my body a chance to cleanse itself maybe I wouldn't be in this predicament.

So I started the fast on a Wednesday and day one went pretty smoothly. I drank lots of green juice and never really felt too hungry. I woke up day two with lots of energy and felt great. I kept thinking that I was going to feel weak so when friends called to go shopping or hang out I declined and stayed put on the couch. By day three I was amazed that I was not really hungry and I still had tons of energy. I finally agreed to go out and run around with one of my friends --I could not sit on the couch for another minute. My fast was to end at 7pm Friday night and Ryan and I had plans to eat together. (I made him eat all of his meals outside the house so I wouldn't be tempted.) By the time dinnertime arrived I had serious thoughts of continuing my fast. I wasn't really hungry at all. I definitely felt like I could have gone for another day or two. The only draw back for me was that I did lose 6 pounds. I didn't want to lose any more weight so I decided to stick with the plan and start eating again.

The fast was a great experience and I definitely think I would do another at some point. Hopefully the small break I gave my body will bring good news on Thursday. I, of course, will keep you posted.

Kristine

Happy Birthday To Me!

Can you believe it has been a year since my surgery!? It is amazing that a year has gone by already. I am just really grateful to have another birthday. There were many times that I wondered if I would make it 38 but here I am going strong. I am now shooting for 40. Do I dare to dream of 50?

Most of you know how much I love my birthday. I call it my own personal holiday. I pretty much celebrate for the whole month of August. Going home to Michigan was part of that celebration. I have only been home a few days and now I am heading to the Jersey Shore to celebrate with my good friend Roey. We both share the same birthday of August 21st. Now I do have a couple years on her but she graciously never brings that up. Now that is a good friend.

The interesting part of my birthday is that it doesn't just mean good times anymore. My birthday now coincides with scan time. Yes, that is right it is already time for those pesky scans again. When I arrived home from Michigan I had received in the mail a confirmation of my next scan. It was supposed to be Monday the 18th. Whenever I get a scan I usually get the results two days later which would have been Wednesday the 20th. As much as I am expecting good news from these scans I wasn't willing to chance this years birthday. I guess you are probably figuring by this point that, yes I did change the scan to Wednesday 8/20 in the early morning. Right after I am heading to the shore with my friends and I am going to enjoy this weekend. I am not going to receive my results until Thursday the 28th. Last time I was not expecting good results. My cough had been non stop and I knew that it couldn't be good. This time I will be shocked if things don't look better. My cough gets better everyday. It is not gone by any means but I feel like I am winning this battle.

Last year I wanted nothing for my birthday except to wake up from open heart surgery. I actually didn't wake up until the next day. : ( This year I just want to be present and alive. I want to live in the moment, swim in the ocean, be with friends and Ryan and just plain soak it all in. I will cherish my 38th birthday and look forward to 39. Thank-you all for making this a life worth fighting for. Big Love,

Kristine

Vacation....All I Ever Wanted.

What an amazing two weeks!! I had such a good time visiting with all of my friends and family back in Michigan. As always with my life it was a whirlwind and there was never a dull moment. I will give you the run down.

Ruffus and I drove 12 hours from Philadelphia to Grand Haven, Michigan all by ourselves. I was worried about making it all of that way without anyone to drive with me. I tried to talk a few friends and family members into doing the drive with me but no takers. I made it in 12 hours flat and had the best time road tripping alone. I would do it again in a heartbeat. I think I talked to half of you during my journey so a big thank-you to all of you that kept me busy chatting for most of the drive. The cabin we rented was beautiful and so relaxing. We were only 100 yards from the beach which was amazing. The only catch was the 100 steps you had to climb down to get to the beach. Down wasn't so bad. Up was a killer. Every morning and evening I would take Ruffus to the beach where he had the time of his life. I love watching that dog run. It warms my heart. I also had the privilege of meeting two of my cousins for the first time! How did I go 37 years without knowing them? They were so much fun and I can't wait to see them again sometime soon. A week went by fast but we plan on trying to make it an annual event.

I left on Friday and headed to Saginaw. It is weird to be back in Saginaw and not really have any of my family living there anymore. I can not even begin to describe how much fun our 20 year high school reunion was. It started out on Friday night with a happy hour that went on until 4 am. After sleeping in the next day and a quick trip to the Fashion Square Mall, we got ready for the reunion. It was great to see everyone together. We have such a great group of people in our class. People say that you will be shocked at how bad people look at their 20 year reunion. Well I guess our class is an exception to the rule. Everyone looked fantastic. Most people stayed until the end and then we had a big group continue for after hours until 5 am. I have not stayed out this late or have had as much fun in a really long time. It was really nice to connect with old friends. I just hope I can do a better job of keeping in touch this time around. A big shout out to the class of "88" I think the only thing that was missing from our party was some Led Zeppelin. Gumby's Group knows what I am talking about. : )

I then went back to my sister Stephanie's house and got to spend some quality time with her and the kids. It was nice to be there with them all to myself. Usually I float into town stay three days and have a crazy schedule. Kids usually don't warm up to people when you are only there an hour. This time I got to hang out with my nieces. We went to the water park one day and Kate and I got to go down the big slide together and Sarah was sitting on my lap by the end of my stay. They are such good girls. I can't wait to see them again.

Then I got to pick Ryan up at the airport and headed up to my parents cabin. It is truly an oasis there. They have 130 acres of land with no neighbors and a large fishing pond. We finally got to just relax and play lots of cards. If you know me at all you know I love to play cards. I could play from the minute I get up until late into the night. We usually played until midnight then everyone would be exhausted and head to bed. I somehow talked my mom into staying up every night an extra hour and playing a card game called Golf. I am still undefeated. Sorry mom, maybe next time.

Then last but not least we drove back to Stephanie's house in White Lake where we hosted an appreciation party for all of my friends and family that have supported me through the last year and a half. We had the most amazing blow up slide and pool for the kids, tons of food and lots of laughs. The only bad part to that day was the weather refused to cooperate. It was raining and 65 degrees. That is ridiculous weather for Michigan in August. However, we didn't let it get us down and had so much fun just catching up with everyone. I was truly amazed at all of the people that took the time to come. Some of you even drove as far as three hours to join the party. Thank-you so much for making the effort and taking the time out of your busy lives.

I could have stayed another week in Michigan. The trip was a whirlwind, which is in true Kristine fashion. I wish I could have just stayed still for a moment or two but then my leg would have started shaking and I would have had to dream up some adventure. As most of you know I can't stay in one place too long. I got home on Monday and I am already talking about where I am going next. Stay tuned.

Kristine

Falling Through the Cracks

The medical profession is crazy. When I last visited my oncologist after my last scan they didn't like how things looked. They had me do a needle biopsy that came back with no abnormal cells. They then suggest that I either do another needle biopsy or surgery. I opted for surgery. I go and visit the surgeon and wait three and a half hours in the waiting room. I told him that he won the prize for longest wait yet. However, the craziest part of that long wait was that they couldn't pull up my scans so the surgeon couldn't really give me an opinion. I then had to run around and pick up all of my scans and deliver them to his office. That was over a week and a half ago and I had yet to hear from them. Finally today I see their number written down on a piece of paper and decide I should follow up and see what is going on. I call and I am immediately put on hold for 15 minutes until a nurse practitioner gets on the phone and informs me that the surgeon talked to my oncologist last week and they decided that I should have the surgery. Thanks for filling me in. When were they going to get around to telling me??!!

I however, have different plans at this point. I am leaving tomorrow for a two week trip to see my family in Michigan and to attend my 20 year high school reunion. I am returning mid August and I am due for my next round of scans at the end of August. I am going to stick it out and see what the next scans show. My cough is getting better all of the time and I will be interested to see if the branch like growths have increased or decreased. I am hoping for gone all together. Time will tell. It is a little bit of a game of roulette. Time is usually not your friend when we are talking cancer but I am confident that all of the things I am doing will make the difference in my good health. People ask me all of the time, "How do you feel?" Well, I feel fantastic. I have great energy and I am having the best summer. I am just starting to feel like I am getting back to myself after the heart surgery of almost a year ago. Another surgery doesn't sound so good to me. How long does it take to recuperate form lung surgery?? Hopefully not another year......

I will most likely not be writing until I return from Michigan. Consider it a vacation from blogging. I will do my best in keeping you posted when I return. Big Love,

Kristine

Party Time...Excellent

WE ARE HAVING A PARTY!!

I am heading to Michigan to spend time with my family. My sister Stephanie has graciously offered up her home for a fun meet and greet/appreciation party for all of you who have supported me for the last year and a half. As much as I would want to make time to see each and every one of you, it is just not possible. We decided a fun family barbecue would be the perfect way to say hello to everyone without going crazy. This is definitely going to be a family party with a focus on the kids so please don't leave them home. I am excited to meet them. We are planning on having a big blow up water slide and a slip and slide. So bring the kids bathing suits. (Maybe an adult slip and slide contest would be fun, so adults bring your suits too....when is the last time you did the slip and slide??)

I do want to stress that everyone is invited. Even those of you I have never meet. Please feel free to come if you are at all interested. Some of you might not know me personally but maybe you have been the support system for one of my sisters or my parents. Don't be shy you are invited. (Yes, you the person reading this that is thinking, "I don't know, I don't even know them," or "I only met them once." Yes you too are invited). We just need to try and get an accurate head count so if you could either reply on this posting or e-mail me directly at kristine821@yahoo.com that would be helpful. See below for the details.

Just so everyone knows, Yes, Ryan will be there. He is flying in especially for the event. Finally I can stop hearing... I can't wait to meet this Ryan guy. If you don't come he might get a complex so load up those kiddies and come out for a fun afternoon.

Kristine's Appreciation Party

When: Sunday, August 10th from 3pm-7pm or whenever.

Food: We are having a barbecue of burgers and dogs (some tofu burgers and dogs as well) with some fun sides and snacks. We will have water, soda, ice tea and lemonade.

What To Bring: kids, bathing suits, any alcoholic beverages you would like to drink.

One Last Goodbye

Andrea's memorial was yesterday and it was quite an event. I loved how it was a christian type service in an old Jewish temple. The people were from every walk of life you could imagine. The rock-a-billy suits, the interesting tattoo's, the punk and the prepsters. She had so many different kinds of friends and it was really perfect to see everyone come together to grieve for such a unique individual.

It was a rather large church and there was barely a seat to be found, even in the balcony. One of my favorite moments was when they explained that in typical Andrea style she had pretty much planned out the whole service. She had friends read scriptures and had one of her friends sing a favorite song. Of course the most moving moments were when her sons and her husband got up to speak. As Ryan said, it is hard to watch a man grieve. Kelly actually put his whole speech up on the blog if anyone is interested in what he had to say. Of course Andrea thought of everything and insisted on having the last word. She had written a letter that was read by a close friend to end the service. In true Andrea fashion her letter comforted us. She told us to wipe our tears and to know she is in a better place. It had a positive spin as only Andrea could have written. It was sad but perfect. I know her spirit was with us yesterday. You could just feel her presence. Goodbye good friend take care. Much love,

Kristine

Anything but an angel.

As many of you know my dear friend Andrea passed away last Saturday morning. I want to thank all of you for your e-mails and phone calls. It is hard to lose someone you care about but I am strangely at peace with the situation. I think having lunch with her the Tuesday before and hearing her talk about how much pain she was in and that she was really ready to die. She was slurring her words from the pain meds and asking for more before lunch was over. I do know the one thing Andrea hated was to not be in the moment and alert. She did everything in her power to deal with the pain instead of being "out of it." I guess I know that in my heart she is in a better place and pain free.

I know Andrea would have loved the title to this blog because she was just that, anything but an angel. She is probably reeking havoc in heaven right now. I can hear her louder then life laugh while she tells everyone just how it is going to be now that she has arrived! Her memorial is on Monday and I hope we celebrate the women she was instead of mourn the loss of her in our lives. Big love to you all,

Kristine

Saying Goodbye

It has been over a week since I have posted anything. I have a couple of idea's of things that I wanted to write about. Such as my new hair do with a new picture. A barbecue we are going to have when I am in Michigan for all of my friends and family who have supported me during this crazy year and a half. However, I just can't find it in me to write about any of it. Lately I have been consumed by my friend Andrea and her pending death. Nothing else seems important enough. I check her blog probably 6 times a day, just waiting for the news we all know is coming. It is hard for me to be a spectator to her death. We were on the same chemo schedule, had our surgeries only 2 weeks apart and yet here I am watching her die. It doesn't seem fair. For a long time I didn't want to except that she wasn't going to make it. I even bought her all of these natural remedies that say they can work on even the worst of patients. To be honest I didn't want to let her go.

I woke up this morning and read her blog and she is prepared and even welcoming the idea of death. She is tired most of the time and in pain all of the time. She has had enough. I then called her to see if she needed any rides today and we talked for just a minute. While talking to her I realized that I too am going to have to embrace her death. I tried to keep from crying on the phone. She is so together....why can't I be. I can barely write because the tears just keep coming. I will see her for lunch today. She wants to have lobster before she dies. I will keep it together for her and remember that she embraced life the same way she will embrace death. She will not shy away from the unknown, but run to it. She has a magnificent spirit that will be missed so much. Andrea, I love you.

Kristine

In case you don't have it her blog is www.punkrockmommy.org Send her good vibes.

A DIfferent Point of Veiw

Ryan was going to write this blog because as you all know, he is much better with the details then I tend to be. However, he is extremely busy with work so I thought I would just do my best.

Last Thursday Ryan and I had a conference call with Brian Clement from Hippocrates. It was extremely interesting. I had sent him my scans before the call so he could take a look at what was going on. He also had the information from my last scan and all of my latest blood tests. He started by saying that he has seen scans like mine many of times.....I think his exact words were thousands of times. His take on the situation is that yes there are probably cancer cells in my lung but what we are seeing with the branching is not a tumor. He thinks that what is happening is that my immune system is doing it's job. He explained that it takes over 5 billion cells to show up on a scan and what we are seeing is that my immune system is coming together to fight whatever maybe in my lung. It explains why I had only healthy cells found in my eight needle biopsies. He also explained that when my good cells are fighting my bad cells it causes heat in the body. Because my body is a perfect machine it sends water to cool down the location which in turn is causing my cough. He also said that my blood work looked fantastic and in his opinion I should stay the course with my diet and wheat grass.

I do have to fess up at this point that I was a bit of slacker on my diet. Not the eating part. I actually think I do a pretty good job of staying raw. I definitely have my weak moments and eating out is extremely hard. I am the first to say that I am not perfect. However, I am really proud of the 90% change I have made instead of the 10% mistakes. Where I have been lacking is the wheat grass portion which is just as important as the diet. I have been taking wheat grass pills for the last 3 months and doing fresh only when it was convenient. It just made things so much easier while I was traveling visiting family and friends. When I asked Brian about the pills he informed me that they are 1% effective. Then I asked him about the frozen wheat grass I have seen in stores and he replied 3% effective. So now I have been back to the basics and juicing fresh for the past 10 days. I am happy to report that my cough is improving everyday.

We also talked about surgery. Brian's take on surgery is that if I decided to go forward they will most likely find cancer cells. Will they get all 5 billion....unlikely. Basically I will be in the same situation as before with my immune system trying to fight off the bad cells. Only this time I will be weak from surgery and getting back on my feet and feeling good can take a while. Of course if they find cancer cells they will want me to go on chemo immediately and I think I have made myself clear how I feel about that. I do intend to meet with the surgeon to hear what he has to say but at this point I think I am going to watch things closely and see what the next scan shows at the end of August. Until then I am in lock down mode. I am trying to stay home and focus on getting healthy.

I know it is hard for a lot of people to understand that I would be willing to go against conventional medicine. I won't lie and say it isn't scary but I truly believe that what I am doing now is the path to a long healthy life. Actually I plan on out living each and everyone of you. HA! HA!