Speeches from the Memorial Event

I am still working on posting the videos, which I am hoping to get up this weekend. In the meantime here are Kristine's sisters' and my speeches from the evening.

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THE SISTER'S WORDS: COLETTE, STEPHANIE AND GRETCHEN

(Colette)

Kristine, welcome to the celebration of your life. We know you are here dancing above. Thank you to each of you for coming together today to celebrate Kristine’s life. The distance many of you have traveled is symbolic of the numerous places our sister lived, loved and traveled. Kristine was a very special person. Many people can be described as this, but Kristine was truly like no one we have ever met…..a free spirit, a lover of life.

There was never a dull moment growing up with Kristine and this certainly didn’t change throughout her adult life. Kristine, like for all of you, was the spark in our family. Because of Kristine’s outgoing personality, Gretchen, Stephanie and I are often known as Kristine’s sisters. No matter how near or far she lived, she always had a strong presence within our family.

(Stephanie)

I have so many memories with Kristine. Kristine and I were only fifteen months apart in age, so we really did grow up together. Lots of funny stories and adventures. So I picked one of the funny stories to tell you because I know Kristine would have liked that……..

It was the summer of 1986. Kristine just got her drivers license. Kristine and I were begging my Dad to let us take his brand new pick-up truck to 7-11. He said, “No way….not in his new truck!” After lots of persuasion on Kristine’s part, my Dad finally gave us permission to go. Kristine always had a knack of talking my Dad into changing a no answer into a yes. Of course Kristine didn’t have plans to go right to 7-11 and come home, we had to drive by a couple of boy’s houses and stop at McDonalds for some french-fries before even making it to 7-11. Kristine was never into following the rules. When we finally made it to 7-11, as we were driving up to park, Kristine hit the accelerator instead of the break and we ended up running right into the front of the building. Thankfully this 7-11 had wood half way up the side. After we hit the building my first though was, “Dad is going to kill us!” I look over at Kristine and she looked at me and she just burst into laughter. We both got out of the truck to look at the damage. Just then, four boys ride up on their bikes, looking to see what had just happened. Kristine turns and looks at me and says….”I can’t believe you just ran into 7-11, STEPHANIE!”

As all of you know, being with Kristine was always an adventure. I always knew that when I went out with her it wouldn’t be a boring time. She was never too tired to go out dancing after dinner or too tired to do A LOT of shopping after lunch.

(Gretchen)

Growing up as Kristine’s older sister, I taught her a few things that I’m sure she carried with her throughout her life. She taught me many things as well.

When I taught her how to master tying her shoes, she taught me how to be extremely patient. I don’t know that I have mastered her lessons as well as she had, but I’m still trying.

When I taught her how to argue, she taught me that I would never win one with her.

When I taught her how to drive a stick shift, she taught me how to relax a little, take a very deep breath and enjoy the ride. That too I’m still working on.

When I taught her how to scuba dive, she taught me how to see the ocean as if it were my very first time in the water. This I can still do.

She lived life differently than most, seizing every opportunity without a second guess. It seemed Kristine was on a mission. A mission to experience life and all it had to offer her, and in my eyes she succeeded brilliantly.

When Kristine found out she was sick, she first taught me how to tell our own family that we need them. This was hard for her. She then taught me the meaning of courage, inner strength, real determination and exceptional grace. She did things her way, the way she wanted throughout her entire life….and I admire her for her choice to stay true to herself.

So, yes I taught Kristine many things, but I think I received the most valuable lessons from her.

(Colette)

Kristine spent her life doing what she loved most, traveling. Any opportunity she got to go on a new adventure she was packing her bags. So many of us here today traveled with Kristine to countless countries many can only dream to see in a lifetime. If you even mentioned the idea of a trip, before you knew it Kristine was going with you and had booked her travel arrangements. Or vice versa, she was always on the look out for someone to jump on board with her to travel to a new place. In 2000, after Kristine learned I was traveling to Europe, she jumped on board and planned the entire itinerary and had us staying at some of the nicest hotels with all of her concierge connections. Within two weeks, we visited countless countries with our favorite being Cinque Terre.

Needless to say I was exhausted, but Kristine was always ready to catch the earliest train possible so we could make the most of each and every day.

Kristine loved a good party and you could count on her to be in attendance. When Kristine turned 30 she threw herself a party themed “29 forever.” Any reason to throw a party and dance, Kristine was in and always the first person on the dance floor. She had a knack for bringing people together and making friends easily. She loved her friends….they were an extension of her family. When I would visit Philly and ask where she had met a particular friend, she would say the dog park, the local coffee shop or any place in between. She made friends wherever she went. One person in particular is her friend Toni. Late in Kristine’s life, Toni was one of Kristine’s angel’s, caring for her like family. When I asked them how they met, and learned Toni had been Kristine’s boss, I smiled. Kristine touched everyone she met.

At one of the many parties Kristine attended, she met Ryan. Soon after meeting Ryan in San Francisco, Kristine and I took our trip to Europe. During our trip Kristine shared how excited she was to have met this amazing guy. She loved his dance moves (especially the Michael Jackson moves and ladder dance), but most of all his keen sense of humor….a perfect match for Kristine. Over ten years, Ryan and Kristine’s love grew as they traveled many mountains, high and low. Little did we know how much Ryan’s sense of humor would keep Kristine’s spirits high and her smile wide. Ryan, we are forever grateful to the love and care you gave to Kristine. Thank you for understanding and accepting Kristine for who she was as a person.

I would like to share a piece that Kristine wrote on her blog in August of 2008.…..

The word stable has always made me uncomfortable. All of you that know me personally will understand what I mean. I always kind of felt that stable would include a nice two car garage in the suburbs with 2.2 kids and the perfect ken doll husband. Now let’s not get the wrong idea, there is nothing wrong with wanting or having any of that in your life. It just wasn’t my thing. Usually when I started to feel too comfortable somewhere I would pick up and move just to keep it interesting. It was a lifestyle I enjoyed. The only rules I ever had were to not buy anything that wouldn’t fit in my car and I never wanted to hear myself say, “I wish I could do that.”

This is truly how Kristine lived her life, without regret. I can now make some sense of why Kristine lived her life the way she did….her way, her terms, no negotiating. Kristine’s path in life was short, but full.

As many of you know, Kristine also had a passion for finding the best bargain in town and when she did everyone heard about it. She was always on the go and had the wardrobe to prove it! As one friend said, “the economy won’t ever be the same without Kristine shopping.”

On behalf of our family, we would like to thank each of you for your love and support of Kristine and our family over the past three years. Kristine was so touched by the outpouring of love. I remember her saying that she didn’t realize how much people cared about her and was amazed at the compassion the world showed.

At 30, Kristine planned a “29 forever” birthday and reluctantly turned 30. At 39, Kristine only hoped to see 40. Life is so ironic. She will remain in our hearts….39 forever.

Kristine often reminded us to “Trust Life.” In fact, in trying times this motto helped pull us through. Today I know she would want us to remind one another of this.

(Stephanie)

Kristine has taught us to be a little more adventurous and to try new things….just as she did. We have always looked up to her. We have always, and will always, be proud of being Kristine’s sisters.

(Gretchen)

At this time, we would like to acknowledge our parents who were always encouraging us to find our own way, to be independent and to live life to its fullest. Mom and Dad, without that encouragement Kristine may have been a lot less adventurous, feisty and free spirited.

RYAN'S WORDS

Kristine and I met over 10 years ago in San Francisco. My roommates and I were having a party. A friend of ours, Shannon Nielsen, suggested to the group of girls she was out with that night, that included Kristine, that they stop by (as Kristine liked to describe it), “the young boys party.” Kristine was 5 years my senior, although she like to joke that I acted like I was 20 years hers.

There were 5 or 6 girls that came storming into our flat that night, while some hip hop song was blaring over the speakers. I was in the living room doing the overbite thumb dance... you know the one (demonstration). Well despite the chaos that ensued as this gaggle of women took over our party, there was one women in particular -- the only brunette in the group -- that stood out immediately to me. She had an electric glow, a radiance that captivated me within seconds of seeing her brilliant smile. And as the commotion of the evening swirled around us, we locked eyes as if to acknowledge our instant attraction.

Later that night, after a bit of dancing and conversation, I was talking to Shannon when Kristine approached us. Shannon, being an instigator for all things that re-lived youth and perhaps noticing the chemistry between Kristine and I, said that we should...well... go into the hall closet and kiss.

My reaction was uncertain and embarrassed. Something like, “ahh really?” Kristine on the other hand just smiled and said, “alright!” So there we were, in an empty hall closet with only a faint stream of light shining in through a small frosted pane of glass above the door. Within seconds of our lips meeting we stopped... pulled back... and looked in amazement at one another, each acknowledging that this was no ordinary kiss. Something had transpired in that moment that was much bigger than us. Kristine and I often talked about that moment as being something that was surreal and magical. We, of course, carried on our kissing and eventually even left the closet to join the rest of the party.

It took us some time to start dating. We would see each other at parties around town. And, yes, some of these parties even had closets. But we were reluctant. Maybe it was our intense connection that scared us a little.

Then one day in December, just before Christmas, Kristine called to invite me out to dinner for my birthday (the 28th of December). It was the first time that we really sat down to have a proper conversation.

It was here that Kristine first told me about all the places she had lived and traveled. She told me about how she lived in Hawaii and Nantucket. That she lived in Aspen where the best job according to her friends was on the mountain. Problem was, you had to ski down the mountain after work and Kristine had never skied before. This didn’t phase her, she took the job anyway and just learned how to ski everyday on her way home from work. She told me how she traveled throughout Europe. Went to Japan, Thailand and traveled throughout Indonesia. And after she had described just a handful of her adventures I couldn’t help but ask, “What drove you to be so spontaneous, to live your life this way?” I’ll never forget her answer. The thought of it now gives me chills. She said, “you’ll probably think this is crazy, but I’ve always had this idea, this vision... that I was going to die young.” This was 10 years ago.

Now at the time, I did think she as a little crazy, but in hindsight this idea she had turned out to be nothing less than poetic. She took this single thought, one that most of us would have just dismissed, and allowed it to shape the way she approach life every single day. If a new opportunity arose, she embraced it. If an adventure came along, she just did it. And if there was a dream or goal she wished to fulfill, she pursued it.

It was this approach to life that led her to coin her personal slogan, “Trust Life.” It was based upon her belief that we’re better off when we open ourselves up to all sorts of possibilities and simply trust the course on which life takes us. She liked to say that we get distracted with our expectations about what should be and miss out on what’s already in front of us.

I think this is why she had so many close friendships and loved her family so dearly. She genuinely appreciated people’s individuality and the unique part they play in our lives. She felt that every connection was worthwhile and had the potential to blossom or to teach us something new. The love you got from Kristine Becker was the purest kind of love. It was one based on trust, forgiveness and absolute devotion.

I miss her. I miss the way that she would just look at me and start laughing in the middle of an argument, which always put things in perspective and lighted the mood. I miss the way she would chase our dog Ruffus around the dining room table just because she thought it made him happy. I miss that one precocious, bellowing laugh she had that only came out when she was around her family. I miss the way she called me RyBaby. Only she didn’t just do it in private, but preferred to broadcast while we were out with our friends. In fact, just the other day her father Jim referred to me as RyBaby (gesturing toward Jim: which was frankly a little creepy). And I especially miss the way she would beg me to put on a slow song so that she could dance with me alone in the living room.

When she was in the hospital, after her brain surgery and was left paralyzed on her left side, she said that she missed dancing with me. That she didn’t want to have to stop dancing with me. So every night after everyone left the hospital room, I would shimmy her over to the corner of the bed, lift her to her feet, and hold her as tight as I could while we swayed to the silent rhythm of our breath.

Kristine touched my life and so many others’ so deeply. Through her courageous battle to overcome a terrible disease, she left no questions about her unbending strength and her unyielding passion for life. I’ll never be the same after knowing her. She inspired me to be a stronger, more caring, and more patient man than I ever thought possible. And after ten years of our close relationship there is no one in this world that knows me like she did. We weren’t married by choice. But we carried out the vows of a true, pure, sweat and beautiful love.

What I take from this experience is that there ARE no, “happily ever afters.” Life is tough. It’s full of hardships, struggles and challenges. While a kiss in a closet can spark a flame, flames are delicate and easily extinguished. But Kristine’s legacy teaches us to embrace the joys that are possible in each moment -- our very own, “happily right nows.”

If we can bring ourselves not to look at what we lost in Kristine’s death, but instead focus on what she gave to us in her approach to life, well then each of us carries her flame within... and that IS forever after.

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In closing, Kristine had a sort of master plan that she wished to have carried out upon her death. She chose a handful of friends and family -- and for Kristine a “handful” meant twenty. Each of the individuals will be given a small urn with a portion of Kristine’s ashes. This gift comes with a set of instructions though. The instructions can be carried out in the next year, 5 years or 10 years if that is how long it takes. The instructions are simple:

1. The individuals are to select a place anywhere in the world that they have always dreamed of going and travel there (no cop outs, Kristine will be watching) and are to take Kristine’s ashes with them.
2. While on this dream trip, they are to choose a special place to spread Kristine’s ashes.
3. Finally, they are to write about the adventure/experience and send me what they wrote.

That’s it. I will be compiling all the writings from all the individuals and put together some sort of memento that will be shared with the group. It was Kristine’s way of leaving her mark.

Kristine's Memorial

Thank you to everyone who attended Kristine's celebration last weekend as well as those who were with us in spirit. The event was a great success and a wonderful opportunity to remember the incredible life that Kristine lived. I received emails from so many of you who expressed your gratitude for the night and how inspired you were by Kristine's life story. If only a few of you walked away from the evening with a new passion for life, then Kristine's legacy will live on in you.

I have included a link to the photos from the evening. I am in the process of uploading Kristine's sisters and my remarks from the evening to the blog as well as the videos. I ran into some technical difficulties because the video files are so large, however, I figured out a way to do it and should have them uploaded by next week. Thanks for your patience.

PHOTOS OF THE EVENING

A CELEBRATION OF KRISTINE'S LIFE

Dear Family & Friends,

Please join us for an evening to remember Kristine and her beautiful life.

We will mingle, share memories and carry out her wish to commemorate

her life through celebration. A short memorial presentation will be

conducted during the event.

WHAT: A special memorial service for Kristine

WHEN: Saturday, Feb 27, 2010 from 5:30-8:30 PM

WHERE: Hyatt Regency, Philadelphia, PA

CLICK HERE TO RSVP

GET MORE DETAILS

PHOTOS/VIDEO!!!!

If you have photos or video that you can share please send to me via email, add photos to my Picasa page or add to Flickr and send me the link.

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Additional Information:

• The links above provide more details on accommodations, directions, parking, transportation info and more.
• We have arranged for discounted hotel rates at the Hyatt where the event will take place. Details are provided in the links above.
• Kristine's remains will be present at the event for those who wish to visit.
• If you have any questions feel free to email me directly at ryan.s.macdonald@gmail.com

Kristine's Passing

In Loving Memory

KRISTINE BECKER

8/21/1970 - 12/25/2009

Kristine Ann Becker passed away at 3pm on Christmas Day 2009 after a three year battle with cancer. She was taken by ambulance to the Pennsylvania Hospital ER and later the ICU. Unfortunately her compromised kidneys, lungs and heart as well as natural fatigue were too much for her frail body to handle. She passed away peacefully in my arms.

We are currently working through arrangements and will provide further details in the coming days. Kristine requested that we not host a service for her. We have not yet determined if or when an alternative event will be planned. Kristine's parents and sisters are in town to help.

Kristine is a beautiful woman and she will be badly missed. Please continue to check back for more information and thoughts.

No Stone Unturned

A few months ago Kristine and I both separately hired a medium (one who communicates with spirits) for a phone sitting. We had heard about this women from a friend of Kristine's. Her friend has seen several psychics in the time we have known her, but none whose readings have been so accurate. Typically when people relay what they've been told by a psychic the message usually includes nothing more than ambiguous statements lacking much, if any, specificity. The messages are, in turn, embellished by the recipient to draw his or her own customized and suitable conclusion. This women on the other hand named individual names (i.e., spirits) and gave striking details about them and their relationships with the recipient. She does her readings without ever asking one question accept to validate that her interpretations make sense.

We set up our appointments separately and were careful that the medium could not link the two of us together (for example, I gave her an email address I use infrequently so that she could not Google me and find the blog). We wanted to see if she gave us consistent and unaided messages. Frankly, I admit that I was not at all a believer going into this reading. I was intrigued by the description of our friend's experience, but intrigue is far from faith. It has been my general, and usually unpopular, belief that death is followed by nothing more than our decomposed bodies as fertilizer for the earth. However, what followed certainly changed my mind and reoriented my perspective. It resurrected a hopefulness and comfort in me about our current circumstance no matter the actual outcome.

The medium, true to expectation, described specific spirits in both Kristine's and my reading. She told Kristine that her grandmother on her mother's side was in her presence and proceeded to accurately describe her ailments in the last decade of her life. She told me that my grandmother also on my mother's side was present, that she had died when I was very young and that we were very close and connected in the last years of her life (a signature memory of mine in defining my relationship with her). In one of the most chilling recounts of Kristine's past my grandmother, through the medium, said that exactly 2 years earlier (she was very specific about the timing), "[The doctors] got the dosage wrong." This was chilling because it was exactly 2 years, to the month, prior that Kristine had received her last treatment of chemotherapy. And it was this treatment cycle from which she encountered severe hallucinations due to an elevated dose. The medium went on, for both Kristine and me, to give a combination of accurate statements about our past and present lives and predictions about our futures as expressed by the visiting spirits.

While the readings from our pasts provided the necessary validation of her abilities, we were most interested in hearing about her predictions for Kristine's future health and well-being -- our key purpose in employing her talent. To Kristine's and my guarded exultation the medium made something very clear, Kristine still has more work to here.

The medium continually described Kristine's life after her disease and how she would use her experience from illness to help others. She spoke of Kristine's fear that additional chemotherapy would finish her and explained that her feeling, according to the spirits, was warranted. She envisioned Kristine resolving her disease using a combination of holistic and conventional means. She interestingly sited the primarily factor in her long term recovery to be though nutrition and further sited that her diet going forward would be less restrictive than it had been in the past (again the medium was not made aware of any dietary measures Kristine had taken).

In my session, I pushed harder to uncover a more concrete path for how this implausible outcome would play out. And although I did not get an exact answer I did get some leads with which to work. The medium told me that Kristine would see a nutritionist who would play a crucial role in her recovery and help her to form a long term pattern of health. She also described Kristine's cancer as being very unique and explained that her recover will be equally as unique.

This is a long set up for the present -- the genesis of a new chapter of trusting life and following our instincts even if it means disobeying logic and naively disregarding what seems inevitable. I attempted to expedite our prescribed fate and sought out a local nutritionist. (Of course, it's unclear whether this was actually a manipulation of fate or just a tangential path ultimately leading to the same predetermined outcome.)

We saw the nutritionist for several weeks before she sent us an email regarding an alternative medical center. It was one that I had heard of before from a few other sources but ignored due to its location in Mexico (a common migration point for homeopathic doctors driven out of the US by the FDA). Her colleague successfully beat his cancer following the center's program. Doing subsequent research on the web I ran across a list of people who had eliminated their cancers through a variety of different naturopathic methods and had volunteered to be contacted. Fortuitously the only sarcoma survivor on the list had had leiomyosarcoma (the same subtype as Kristine) and had attended the same center that our nutritionist had recommended.

Well, this was too strong of a coincidence to ignore. I called the man to confirm and learn more about his story. Prior to going to the center his cancer had spread to his pancreas, lungs and liver. He was 39 when diagnosed and had several surgeries to remove malignant masses. He told me that within 4 months on the center's treatment his check up scans showed stable disease, within 6 months his tumors started to reduce in size and within a year all of his tumors were completely undetectable. His oncologist told him that he didn't want to know what he was doing but whatever it was to keep it up. He shared a number of stories with me about people he had met through his yearly check up visits to the center who had similar experiences.

At the man's suggestion I called the homeopathic doctor at the facility. He told me that based on Kristine's advanced stage and type of cancer the chances of the treatment's success were certainly reduced but that it depended on the individual. Typically they like to evaluate the patient in person, but he felt it best that Kristine not make the trip in her current state of health. So instead I made the trip and discuss the treatment on her behalf. In just two weeks I organized my travel plans and headed to meet with a homeopathic doctor in Mexico. Kristine's mother and sister flew in for a short time to help Kristine while I was away.

In the last few weeks Kristine's condition has deteriorated at a faster pace. She is unable to attend physical therapy any longer, she now relies on Oxygen almost constantly to prevent labored breathing, new tumors continue to spring up daily in random locations throughout her body and she seldom finds relief from the pain caused by the tumors on her head, shoulder, back and abdomen. She will receive Cyberknife radiation on her shoulder (in hopes that it will improve her range of motion which currently restricts her from even feeding herself) and a large tumor under her left breast (which has burst open recently causing an exposed wound). The only other conventional options are in trial phases, which Kristine does not qualify for in her condition (including Pazopanib and Yondelis as recommended by some of the blog's readers, thank you by the way) or are not currently open to new patience (Rexin-g). So unless one of these drugs is fast tracked due to an overwhelming success in trial none are viable options.

I've hesitated to be candid about this chapter in Kristine's cancer fight. I realize that some of the unorthodox tactics we have pursued inevitably bring intense skepticism and judgement. (Even though it's not as if we have ignored conventional tactics entirely.) But as I sat alone in a hotel room 3000 miles away from Kristine over the weekend, my solitude compelled me to share this current phase of an unrelenting quest to save her life no matter how crazy it might seem. In a way, this part of our story speaks to the desperation we face to find hope under any stone that has yet to be turned, not wanting to look back with regret. To walk away from a belief that anything is possible is walking away from the wonders of a miraculous universe that displays its powers in unusual ways. You can call it God or energy or chaos. You can accept or deny that we have a hand in the outcomes it prescribes. But you can't deny its existence. For Kristine and me this means putting our faith in the fight and not going down settling for what seems to be an inevitable fall. As Neil Young said in the song Out of the Blue, "it's better to burn out than to fade away." We will fight on and keep trusting our instincts knowing that our pursuit, hope and faith never faded.

Restless Nights

It is Sunday in the early evening. I am writing this post by Kristine's bedside. For the last couple of hours she has been in a cycle of sleeping and waking states. When she's sleeping she's restless. Her arm and hand move about as if she were trying to grab hold of a cup or pet an animal. She blurts out full sentences, dialog from the scene of a dream she is having with a character in her subconscious. When awake she's partly aware and partly confused, generally unsure of her surroundings. She has asked me several times (not remembering that she asked me just twenty minutes earlier) when we got home, even though we haven't left the house all day.

The likely reason for Kristine's condition is a negative reaction to a new pain medication she was prescribed and has been taking for a couple of days. However, the confusion is none-the-less concerning. Kristine has a very small tumor in her brain, for which a sign of possible complication is confusion. Further, her last dose of the medication was yesterday morning, so the effect from the drug should have already run its course. To be extra cautious I paged the oncologist on-call. He felt that the symptoms were not of immediate concern and that Kristine should be evaluated in the morning to be sure that she regains full mental capacity. We'll see how she is mentally in the tomorrow.

Unfortunately, another issue surfaced tonight that may also require attention in the morning (it's no surprise since these things seem to come in pairs). While I was massaging Kristine's neck to calm her down, I noticed that her pulse was not beating in a fluid rhythm. Her heart beat had reverted back to an abnormal pattern due to her cardiac arrhythmia, which is normally managed through medication. If this condition does not correct itself by morning we will have to see our cardiologist first thing tomorrow and likely have to spend the day in the hospital to get another cardioversion procedure done. Regardless of what the morning brings it looks like we maybe in for another long, sleepless night. We'll need some closure before we can breath any easier.

I should back up a little and provide an update on how Kristine has been progressing over the last couple of weeks. We saw our oncologist two weeks ago. We had a few objectives for our visit. First, Kristine has been having an increasingly hard time breathing recently, especially when she exerts herself. The doctor confirmed our concern. On the examination table Kristine's oxygen level was 95%. When she got up and walked just a few steps her pulse oximeter reading dropped to 88%, indicating that she was not getting enough oxygen through her limited lung capacity. Our Oncologist quickly called in an order for oxygen, which was delivered to our house that night. Our second objective was to discuss a clinic trial for a less toxic drug option being conducted out of our cancer center. Unfortunately, Kristine's advanced condition disqualifies her for the study. Finally, we wanted to discuss pain medication. At the time of our visit, Kristine was having stabbing pains in her back caused by tumor growth pressing against a muscle or nerve. He prescribed a long lasting pain med, however, it was this medication that led us to the situation I described above.

We received the results back from Kristine's brain MRI. Our Neurosurgeon was not concerned and did not feel that any immediate action was necessary -- the tumor has progressed very little from the previous scan.

Kristine continues to push on, but the battle is taking its toll on her mentally and physically. The pain in her back has subsided, but has been replaced by pain and discomfort in her right shoulder where several tumors have enlarged and hardened the area. The tightness this has created has made it difficult for her to use her one good arm. Additionally, in the last few days, both of Kristine's arms and hands have swollen to one and a half times their normal size. This is due to a build up of fluid in the lymphatic system known as lymphedema. The lymphatic system is unable to expel fluid from the limbs due to either a blockage of the pathways or a breach of the nodes themselves from tumor growth. The condition does not seem to be painful but is fairly uncomfortable and unnerving. We have an appointment on Tuesday with the Cyberknife radiologist to discuss potential treatment of the area. It is our hope that Kristine can see some relief from this procedure and regain a broader range of motion in her right arm. Without some form of relief Kristine will continue to struggle even more than she already does with daily tasks.

Burned Out

I know it has been a while since our last post and I apologize for not having written sooner. I guess I've been putting it off in hopes of having some good news to share for a change. You have to understand how frustrating it is to keep up this blog with only the rare chance to share positive news.

Kristine and I are both burned out. We're tired, frustrated and worn thin after almost 3 years of this battle. We have been hanging on to the hope and promise of a better day. A day when Kristine can live carefree again; a day without pain; a day where we don't have to worry about cancer and where in Kristine's body it will rear its ugly head next; a day when neither of us breaks into tears struggling to understand WHY this is happening; a day when we can finally just hold one another and feel safe with the idea that there's nothing imminently pulling the other away; a day when we can just live out a normal day. But our hope is being tested. We feel like we're in a dark hole with no clear exit and we're running out of time.

Over the past few weeks, several new tumors have emerged throughout Kristine's body. She now has 18 tumors of various sizes within the perimeter of the hairline on her head. She has a marble sized tumor that is growing just under her left breast with small tentacles reaching out in several directions, another small lump midway down her back just to the left of her spine and still another pea sized lump further down her back. There are three small lumps that we can feel in her abdomen accompanied by swelling and pain in her left abdominal side. Her right shoulder has swollen in size as the cancer continues to compromise the lymph nodes. The veins in her right arm and chest protrude with increased pressure as the swelling and pain limit the use of Kristine's only functional upper limb. Kristine's cough has continued to worsen and she increasingly finds herself short of breath with any moderate physical exertion.

Even scarier than the tumors that we can feel are those that we can't. We know that there are small tumors on Kristine's adrenal glands just above the kidneys, but this is based on observations of her chest scan -- a scan of the abdomen was not conducted. At this point I'm not sure that either of us wants to know. Having knowledge up until this point helped to manage our decisions. Kristine chose to radiate specific tumors before they became an issue. However, without good options to solve the problem, knowledge of additional internal tumors is just cause for greater anxiety.

Mentally, Kristine is quite volatile but increasingly more depressed. She rarely makes it through the day without breaking down in tears. Her mood is mostly affected by the pain she is experiencing. She is taking Vicodin, which seems to calm her but doesn't suppress the pain entirely. Her sedentary state, frustration with a relentless cough and other medications are all contributing factors to a weakened emotional fortitude. To keep herself from slipping into depression she preoccupies her mind with iPhone games and television shows on DVR. She has been withdrawing from conversation with friends lately as well to avoid the questions about her health. The thought of having to discuss the progress of her disease and answer questions about what she is doing next overwhelms her. She enjoys listening to others talk about what's going on in their lives, no matter how mundane, as long as it doesn't turn back into questioning about her.

Kristine is still attending Physical Therapy three days a week. This is a positive source of motivation and energy. We have lost two of our four weekday helping crew, one to reemployment and another to child care issues. One of Kristine's friends has generously stepped up to take on three days, but I'm concerned that this may be too much to ask. The way Kristine is progressing we may need to explore professional help. This, of course, comes with a huge mental stigma attached, with which Kristine will have trouble coming to terms.

We need a renewed sense of hope and change of direction. That's all for now.

Trials and Tribulations

Kristine's mother left Philadelphia a week ago this past Friday. It was great having her in town for a couple of weeks to help. Kristine enjoys having her company and I enjoy getting a little break from the routine. I took this past week off from work to cover some gaps we had in our schedule of weekday helpers, spend some time with Kristine and generally try to recover from burnout. You don't realize how fatigue you really are until you slow things down for a while.

There has been a lot of news since the last post. A couple of weeks ago Kristine had to go into the hospital for another cardioversion to regulate her heart rate, which had again accelerated to double the normal rate. The procedure was relatively quick this time around, only requiring a day long out-patient visit. Kristine had another seizure while she was home in bad, this one lasting longer than the others, a full two minutes. Even more worrisome is the fact that the time lapsed between seizures has shortened with each episode -- this one occurring less than a month since the last.

Kristine got the results back from her latest scans. Generally speaking all of her existing tumors have remained stable or increased in size. There are also several new lesions that are cause for concern, but without immediate nor obvious action plans stacked against them. There is one very small, new tumor in the frontal lobe of Kristine's brain (which controls a number of complex cognitive functions such as decision making and memory). Our neurosurgeon is addressing this new lesion with our Oncologist. However, he initially felt that the best course of action was to wait and revisit the mass in a month when Gamma Knife radiation would be considered depending on its progression and size. Additionally, it appears that Kristine's disease has spread to her adrenal glands (those that sit on top of the kidneys). This is concerning for a number of reasons but chiefly because of the proximity to the kidneys and the indication of a broader spread of disease throughout the body beyond her upper thorax.

Kristine is still in a lot of pain from the spasms in her back. And while the pain in her left shoulder blade has subsided, it has been replaced with a sharp pain throughout her right arm stemming from swelling in the lymph nodes in her armpit and shoulder. The pain in her back and arm are causing her the most discomfort, which is only partially alleviated when she is resting in bed.

Kristine has started her new holistic treatment. It is too soon to tell whether it's having any beneficial effects. Though Kristine has noticed some swelling at many of her cancer sights (for example, the several tumors on the top of her head). The treatment is known to cause swelling as it affects the cancer cells, but only time will tell whether the treatment is impacting the tumors' size.

In the meantime, we are looking into a couple of clinical trials. We are skeptical of most trials. Even those in second or third phases of study often have success rates below 40%. So when you consider that only half of the participants in the study are given the actual drug (the other half are administered a placebo to be certain that it's the drug and not some other factor producing the same results) the chances of seeing any success from a study are lowered to less than 20%. Additionally, "success" in sarcoma trials usually just means slower progression not reversal of disease. So essentially there is less than a 20% chance of seeing your disease slow down and a greater than 80% chance of being exposed to a new unproven treatment that could prove to be more harmful than doing nothing at all. The early results have to be pretty compelling for us to go down that path.

Overwhelmed

Kristine has been in a lot of pain the last couple of weeks stemming primarily from the muscles in her upper back. On the right side, her muscles frequently launch into spasm lasting anywhere from one to ten minutes. It isn't clear exactly what's causing the spasms, but they are likely the result of either overcompensation for her paralyzed left side or interference of the muscles by tumor masses in her lymph nodes. On her left side, the muscles in her back that hold the shoulder blade in place have started to weaken due to inactivity. Kristine was kept away from physical therapy for several weeks while she received radiation to lymph node tumors in her right shoulder and neck. With no strength in the musculature to hold them in place, her left arm and shoulder have rolled forward pulling on the back muscles and inducing extreme discomfort. Kristine tried taking a muscle relaxer to relieve the pain. The trouble was, while it ameliorated the spasms on her right side, the medication did little to relieve the tension on the left. More concerning was that the prescribed pharma interfered with Kristine's breathing, leaving her already compromised lungs gasping for air. The situation has left Kristine in a Catch 22 -- the pain makes it difficult for Kristine to work on strengthening the muscles, but only strengthening can resolve the pain.

Several doctors' appointments are on the agenda for this week and Kristine's mom will be on hand in Philadelphia to help. Kristine is scheduled to see our primary care physician to get some options to manage her muscle pain. She will also get his recommendation for a good physiatrist since ours has turned out to be somewhat of a deadbeat -- not returning a single request for call back.

Also this week, Kristine will get her regular check up scans. She will have CT scans taken of her chest, shoulder and neck and an MRI of her brain to evaluate and measure the progress of her disease. The anticipation leading up to and the frustration that often follows the scan results is emotionally taxing. The reports rarely bring positive news and are never accompanied by solutions to fix the underlying problem. Our expectations for this round of scans are low though as we see clear signs of disease progression. The first is a serious of tumors on the surface of Kristine's head within the perimeter of her hairline. Although only two have reached a large size -- about that of a grape -- several more have continued to enlarge and still others have developed anew. Another visible sign that has reared its ugly head in just the last week is a small lump that has formed at the lower crease below Kristine's left breast. The signs are especially troubling as they represent what is likely just the tip of the proverbial iceberg, leaving us anxiously wondering what might lie beneath the surface.

We have both conceded that the herbs Kristine has been taking over the last several months are not working to reverse the progress of her disease. She is still taking the supplements and herbs until we move on to our next option in the case that they are having a slowing effect on the advancement of her cancer. We both remember the condition she was in prior to beginning the herbal treatment and hate to have her fall back into that state. There is another natural option that Kristine will begin taking after her scans are complete. It has the most evidence from conventional research of anticancer success than anything else we have tried to date. I'll talk more about that in later posts once we've had a chance to evaluate its impact.

Overall Kristine is feeling frustrated, dejected and overwhelmed by her situation. She feels like the progress she has made physically to improve her mobility over the last several months is quickly being reversed. Mostly she is just exhausted from being in pain. Her emotional breakdowns come more frequently these days. Kristine tries to compose herself during the day with her friends and helpers until she can release her emotions with me at the end of the day, but even this has become difficult.

We are still holding on to hope even if it is by a string. Hope that an answer, a solution, is around the corner.