8/28 - Home

Kristine came home on Tuesday evening to the comfort of more familiar surroundings -- although the hospital surrounds have become pretty familiar these days. Discharge did not come without some additional poking and prodding. X-rays taken of Kristine's chest showed a build up of fluid on her lungs. To remove the liquid a long needle was be inserted into her back to draw off the liquid. Kristine said it was excruciatingly painful, but admitted that her normally high pain tolerance has decreased over the past week -- there's only so much one person can take.

Kristine has certainly hit a wall. She is tired, uncomfortable and above all in a lot of pain. Hopefully, being home will help put her mind at ease and aid in her recovery.

8/26 - Queen of Hearts

Kristine is doing well, but is in a bit more pain than she has been in the prior few days despite the pain medication. Our friend Roey stopped by for a short visit in the morning and in the afternoon Kristine got out of bed for a short walk around the floor. In fact, she walked out to the waiting room and played a game of cards with her parents and me. The game was a good distraction. She was exhausted by the time she made it back to her bed.

We are all glad to be there to talk and entertain her; give emotional support as she struggles with her reality; and rub her back, legs and feet to take her mind off the pain.

8/25 - I C U Later

We arrived in the ICU for the start of visiting hours (12 noon) and Kristine was being wheeled up to the new room. She had a tough morning, but by 1 o'clock she was in better spirits. She was able to get a short walk in before we left for the night, a positive step forward in her recovery process. Her nurses have been great on the new floor. They have been very attentive, almost more so than in the ICU.

We are not sure how much longer she will need to be in the hospital, it all depends on how she does in the next couple of days. Dr. Bridges was planning to check on Sunday evening so we might know more when we see him.

8/24 - One More Night in the ICU

Kristine is doing really well. Her drainage tubes were removed this morning, which seemed to help her expel the fluid in her lungs more easily, a good sign of progress. She just came off of her blood pressure medication this evening so she will be monitored one more night in the ICU at Pennsylvania Hospital and will likely move to a regular floor tomorrow. They've not yet had her walking, just sitting up in a chair once a day for an hour or so.

Dr. Bridges and Dr. Shrager (the heart and vascular surgeons, respectively) each stopped by Kristine's room to check on her today. They are very pleased with the results of the surgery and with Kristine's progress.

Dr. Staddon also stopped by in the morning to visit Kristine (he has been by a few times this past week). He is very happy with what the surgical team was able to accomplish -- remarking that they got 99% of tumor and feels confident that what's left is manageable through radiation and additional chemotherapy treatments. Dr. Staddon praised the surgical team remarking that their combined skill and expertise allowed them to complete in 8 hours what would have normally been a 16 hour procedure (likely exaggerated for affect but his point and his high regard for the surgeons is clear).

8/23 - Still in the ICU

Kristine will spend another night in the ICU tonight for close monitoring. Her blood pressure is still quite low and she is still draining a lot of fluids from her chest cavity. She is doing well overall, but coughing up the fluid in her lungs is painful and irritating. Although she's disappointed that she can't see more visitors while in intensive care, she's enjoying the extra comfort, staff attention and rest.

We will see how things go tomorrow.

8/22 - A Day After Surgery

We took advantage of every available visiting hour in the ICU today, 12pm -6pm and then 8pm-9pm. Kristine seemed to improve with every hour that passed. We first saw her in the morning while she was still intubated and unable to speak -- the respirator and feeding tubes reaching down into her lungs and stomach through her mouth. When asked how she was doing she pointed to the tubes in her mouth and then turned her thumb down expressing her discomfort.

Even while on pain medication she became more lucid and interactive throughout the day, although she did a good bit of sleeping. Once she was extubated she felt better, however, she said that the experience of having the tubes pulled from her throat was THE most terrible thing she had ever felt.

There's still a lot of fluid in her lungs from surgery and from intubation. She needs to expel the fluid by coughing, a process that is hard for us to watch, but most certainly and excruciatingly painful for Kristine to experience. With each cough she clasps her heart shaped pillow, which the hospital gives to patients for this very purpose, against her chest to ease the pain. It is a slow, weak ragged cough that is repeated several times, often for several minutes, until relief is found.

Kristine will be in the ICU for another day. She will move to a regular floor tomorrow evening, provided that she continues to recover as planned.

8/21 - Final Words for the Day

Well if you're just checking in, a lot has happened in the last 14+ hours. I have included updates throughout the day, so be sure to read all 5 posts for 8/21 below.

We saw Kristine in the ICU after her surgery. She was still anesthetized and unresponsive. The head nurse and the surgical assistant said that she would begin to respond sometime tonight as they closely monitor her vital signs and condition. Since we were of no use at the hospital we came back to the house to get some sleep and get ready for tomorrow.

P.S. If you would like to send a message to Kristine either on the blog or to my email (ryan_macdonald@msn.com) I can read them to her when she is more aware. Remember to wish her a Happy Birthday!

P.P.S. I found an great career profile on our heart surgeon Dr. Bridges in the Harvard-MIT Division of Health Sciences and Technology Newsletter (see page 8-9). http://hst.mit.edu/images/upload/HST_Connector_Winter06.pdf

8/21 - 5:00pm, 2nd Phase Successful

Dr. Bridges entered the waiting room at 5:oo pm with a pleasant look on his face. He regretted not having a graphic to aid in his explanation, but nonetheless walked us through his procedure. The tumor, although extending into the atrium (upper right chamber of the heart) was not attached to the main atrial wall. It was, however, attached to the superior vena cava (SVC), which leads directly into the atrium of the heart. Previously, Dr. Bridges had thought that the tumor might be attached only to a small degree of the vessel wall. However, examining the vessel directly he found that the tumor had infiltrated a 360 degree portion of the SVC and did so over a large section of the stump of this vessel. Since they could not salvage any of the vessel without the risk of leaving cancer cells behind, Dr. Bridges removed a significant portion of the SVC and, using a vein from Kristine's leg, reconstructed a new pathway for the blood to flow into the heart (i.e., essentially "bypassing" the missing vein with a new one).

The doctor felt that the surgery was successful. He articulated that a small risk exists that the new bypassed vein could experience increased clotting at the connection point (only a 10% likelihood) and that Kristine may see a minor amount of permanent swelling in her right arm (likely unnoticeable). He told us that he assisted Dr. Shrager in the initial portion of the surgery and clarified that it was not time that prevented them from resecting the last bit of tumor mass in Kristine's shoulder, but rather the risk of getting into deep chasing an unknown section of tumor mass. Future radiation will likely be necessary to "zap" the remaining mass.

The surgical team is currently wiring Kristine's ribs back to her sternum (breastbone) and stitching her incision together (they do this using plastic surgery techniques to minimize scaring --"staples" are a thing of the past for those of you who are wondering). We should get to see Kristine in recovery soon.

8/21 - 4:00pm, Oprah

Ironically, Oprah is on television in the waiting room with a special segment focusing on heart conditions and disease.

8/21 - 2:15pm, 1st Half Complete

There are two parts to Kristine's surgery today. The first is to resect any remaining tumor from Kristine's right subclavian vein (the vein that runs underneath the clavicle or collarbone). The second is to remove tumor from the right atrium of her heart and the superior vena cava (the major vein the dumps blood into the heart from the upper half of the body).

Dr. Shrager, the vascular surgeon, operated first, performing the resection of tumor from the subclavian vein. When we met with Dr. Shrager on Monday (the day before Kristine's surgery) he indicated that he would likely need to permanently remove Kristine's right clavicle bone in order to properly access the vein and confidently remove all tumor mass. He explained that this was very typical in operating on this particular vein due to its partially obscured location behind the bone. He also explained that the bone is not entirely necessary and removal would inhibit only extreme activities (for example a tennis serve). As you can probably image, Kristine was less than thrilled with this potential outcome especially as a last minute development. After discussing further with the doctor, he assured us that he would do everything he could to save the bone short of compromising complete removal of any tumor cells.

Dr. Shrager called us out of the waiting room at around 1:45. He explained that he had found four small independent masses along the inside of the vein. Fortunately the vein was exposed enough that it did not require removal of the bone -- news that Kristine will certainly appreciate and that the Becker's and I were happy to hear. Unfortunately there is still a small fourth mass in the vein around the shoulder that Dr. Shrager could not access and had to leave behind. To paraphrase the doctor's words, she would not be able to take anymore. We assumed this to mean that time was a factor since the surgery had already gone 4 hours with another 3-4 hour heart surgery still ahead. We will be discussing options regarding this small tumor at a later point.

As for right now, Dr. Bridges has begun the heart portion of the surgery. We are anxious to hear his report but don't expect any news until around 5 or 5:30pm.

Until then,
Ryan

8/21 - 9:46am, The First Incision

The surgery began at 9:46am. One of the critical care nurses came out to let us know that Kristine was doing well, to set our expectations on the stages of surgery and to let us know that the first incision had been made.

8/21 - 8:21am, Birthday Surgery

Here we are, the day of surgery and in the waiting room we are doing our best to calm our anxiety. Kristine, whom had to be nervous, didn't show it as she was wheeled into the operating room on her transport bed. She entered preop at 7:35 and prep at 8:12 (we can track her progress on a screen in the waiting room). Surgery has not yet begun.

The benefit event was a great success with a surprisingly good turnout given the relatively short notice and overlap with one of the busiest vacation periods of the summer. We owe a tremendous amount of thanks to Roey, Simone, Matt and Trevor for their efforts in organizing and pulling off such a great event. We also owe our gratitude to all who attended and to those who sent their blessings.

The picture above shows the wristband that was given out at the benefit. The words "Trust Life" are imprinted on it. This expression is one Kristine often uses when life take its own course without regard for the controls we put in place to manipulate it in our favor. When things take an unfavorable turn she says, "sometimes you just need to let go and trust life." It's an expression that she lives by and one that has never been so true as it has been in the last sixth months.

The surgery is scheduled to last anywhere from 4 to 6 hours. I'll be blogging periodically throughout the day as we get updates. Keep Kristine in your thoughts and prayers.

Ryan

8/15 - Silent Auction Event

The silent auction items have been finalized for the benefit.

_________________AUCTION ITEMS_____________________

Loews Coronado (San Diego)
2 night stay in deluxe accommodations and complimentary Market Café breakfast for two. Expires 8/30/08
http://www.loewshotels.com/en/Hotels/Coronado-Bay-Resort/Overview.aspx

The Westin Alexandria (Virginia)
2 night weekend stay. Opens November 1, 2007
www.westin.com/alexandria

2 One Hour Tennis Lessons with Dan Gagnon
Dan teaches at the Cherry Hill Health and Racquet Club (and will do your lesson there, no guest fee required). He is PTR certified and has 14 years of teaching experience (and is Roey’s favorite instructor)

Closet Storage & Concepts
$2,000 towards the purchase of a Custom Closet
http://www.closetandstorageconcepts.com/

Loews Annapolis Hotel (Maryland)
Two complimentary nights, concierge service for in-town touring, restaurants and shopping arrangements. Expires 8/31/08
http://www.loewshotels.com/en/Hotels/Annapolis-Hotel/Overview.aspx

5 One Hour Personal Training Sessions with Allen Harvin
Allen has been training for 25 years and is NASM and ACE certified. An athlete himself, he was in Superbowl XX playing for the Washington Redskins. He will come to your house, meet you at a park, in your gym etc… in the South Jersey or Philadelphia area.

San Francisco Weekend
2 nights accommodation at the Hyatt Regency, Limo pick up from either SFO or Oakland airport via Grand Limousine, tour of choice by Great Pacific Tour, Facial by Raya.
http://www.sanfranciscoregency.hyatt.com/
http://www.greatpacifictour.com/
http://sanfrancisco.citysearch.com/profile/864179/

Contractor for a Day
Have a full day of Inside & Out Property Services work. A crew of three specializing in plumbing & electric, basement finishing, roof repair, custom kitchens & baths, dry wall, tile work, lighting, materials expertise, siding installation & repair, etc…or just handy man type jobs. You choose.

Professional Photography Portrait Session by Sean Novak
Sean will travel to Northern Delaware, Philadelphia and Southern Jersey to meet you in a scenic location for an hour portrait session (family/engagement/children etc.) He also has a studio in Delaware.
With $200 reprint credits, this is valued at ~$450.
http://www.seannovak.com/

Philadelphia Opera Tickets
2 complimentary tickets to Vincenzo Bellini Norma on Wednesday, April 16th, 2008 at 7:30 pm
http://www.operaphilly.com/

Philadelphia Flyers Autographed Puck
#17 Jeff Carter NHL certified puck

The Madison, A Loews Hotel (Washington DC)
One night stay at this beautiful hotel.
http://www.loewshotels.com/en/Hotels/The-Madison-Hotel/Overview.aspx

8/12 - The Surgery Date is Set

Kristine's surgery is scheduled for a week from this Tuesday. A date that happens to fall on Kristine's birthday. She's handling this news surprisingly well for someone to whom a birthday is the most important day of the year. I guess she figures there could be no better birthday gift than a rebirth -- life renewed with a healthy future in front of her.

She's in Michigan this week visiting her parents and sister. It's a good opportunity for her to relax, have some fun and generally keep her mind off what's to come.

We meet with the heart surgeon again this coming Friday and the vascular surgeon for the first time the following Monday. The surgery is the very next day. With all the dates booked, there is a sudden and palpable feeling of reality. And while I'm certainly feeling some anxiety, I can only image how Kristine must be feeling as every possible (as well as unlikely) scenario runs through her mind.

-------

On another note, Roey and Simone, the organizers of Kristine's benefit this Saturday, will be posting silent auction items to the blog on Friday for those of you who can't make it. From what I hear there are some pretty great items that have been donated by local and national businesses.

If you're interested in bidding on any of the items, Roey's email will be listed on the blog. Simply email her your bid, include your name and it will remain silent until the end of the benefit. They will provide all the details on Friday.

8/7 - Announcement

Our friends have graciously organized a benefit in Kristine's honor and have asked that I post the invitation on the blog. Kristine didn't have many of your email addresses, but the invitation is open. (Apologies to those for whom this is a little last minute).

When: Saturday, August 18, 12:30PM

8/7 - MD Affirmation

It is clear entering any one of the many buildings that make up the vast MD Anderson Cancer Center that you are in a special place. From the building's directory board, which list an exhaustive collection of cancer disciplines, to the diverse groups of people whom have congregated here in search of answers from around the world, there is a unique energy.

At around 8:15 am we arrived at 1515 Holcombe Boulevard (coincidentally the same street number as Kristine's cousin, Cris, with whom we stayed during our visit). We spent about 20 minutes finding our way around the hospital building. Upon arrival to the Sarcoma Center, we completed the standard set of paperwork and procedures before being placed in the examination room. And Kristine answered the standard set of questions regarding her medical history, treatment timeline and symptoms, first for the Primary Nurse and then again for Physician's Assistant.

Dr. Shreyaskumar Patel, Director for the MDA Sarcoma Center, entered the room. We immediately got a sense for his dry wit in his opening reference to his relationship to Dr. Staddon and their recent discussion about Kristine's case. He preempted our questions with a long monologue about his thoughts on Kristine's cancer. He was deliberate and decisive as he walked us through his evaluation. He addressed Kristine's case in separate parts, taking the time at each stage to focus on the most probable scenario and his advised solution.

Generally speaking, Dr. Patel’s evaluation and recommended treatment plan were consistent with our current approach. He agreed with Kristine's current diagnosis and acknowledged that the treatment was having a positive effect in reducing the tumors based on his own review of her scans. However, in his opinion, he felt that we could be more aggressive with treatment in a couple of key areas.

First, he felt that the eight weeks between Kristine's last chemotherapy and her surgery was too long. Even if the tumor appears to be inactive there is a small chance that active cells still exist. And even this minor risk, he felt, was worth more aggressive tactics to prevent future recurrence. He recommended that Kristine either receive another cycle of "adjusted" chemotherapy before her surgery (using only one of the two drugs Kristine had been getting) or move up the date of her surgery.

On the matter of surgery, he encouraged us to stay the course. He, naturally, had a bias toward the surgeons he most frequently works with, but he felt that it was in our best interest to avoid (a) losing more time (the time it inevitably takes to move through a new health system) and (b) potentially spending more money (our insurance provider declined to cover our visit to MD Anderson, future treatment at the center would require a fight). Although Kristine and I had reached a similar conclusion before our meeting -- that she would be best to get surgery in PA based on time and insurance -- the doctor gave us the validation we needed.

Dr. Patel also addressed the specifics of surgery. He confirmed Dr. Staddon's opinion that surgery was a necessary next step not only in the Heart but also in the vein beneath the clavicle. His justification was simple. No doctor can be absolutely certain that any of these apparent masses is active tumor. Therefore the most logical approach, in his opinion, is to be aggressive and remove the "monster," as he put it.

We had several questions, but there was one in particular to which we got a surprising response. We were curious to get his opinion on treatment (chemotherapy or otherwise) after surgery. Dr. Staddon had not ruled out post-surgical chemotherapy, but he had not stressed its necessity either. Dr. Patel, on the other hand, once again recommended an aggressive approach. He strongly suggested that Kristine receive 2 to 4 cycles of chemo after surgery.

Overall, we were both satisfied with the outcome. Dr. Patel supported Kristine’s current treatment path both clinically and surgically. However, he suggested a slightly more aggressive treatment schedule to minimize even the smallest risk of recurrence. A few hours after our appointment, Kristine got a call from Dr. Staddon’s office. Dr. Patel had called Dr. Staddon directly to convey his thoughts. In turn, Dr. Staddon, in agreement with his assessment, put the wheels in motion to move Kristine’s schedule up. It was interesting to us to see just how quickly this transaction occurred. It highlights one of the major faults of our health system – that the patient has to get a second opinion in order to force doctors to cross-collaborate and share opinions.

As for Kristine, she is landing somewhere in the middle, wishing to take a moderate stance. Although she subscribes to the aggressive tactics suggested by Dr. Patel, she also believes that reacting at this point could cause more harm. Her surgery will likely move up one week (potentially overlapping with her birthday) and she will likely seek to continue some form of chemotherapy treatment after surgery (this still needs to be discussed with Dr. Staddon).

Ryan

8/2 - Lucky Leo

Those who know Kristine (or any Leo for that matter), are abundantly aware that August is more than just a month on which her birthday falls. It's a serious of days that collectively represent her "birth period." And there is no more important time throughout the year (for her or anyone else around her) than this one. So it should come as no surprise that in these early days of August, Kristine has been blessed with a run of great news and fortune.

Dr. Staddon's office contacted Kristine today regarding the results of her PET scan. What did the scans show? Nothing... the scans showed no trace of active tumor anywhere. The logical explanation, according to Staddon's RN assistant, is that the tumor is dead. This isn't to say that Kristine is completely out of the woods, but it certainly validates the success of her treatment and future prognosis.

Kristine also heard back from MD Anderson. I'm not sure if it was the persuasion of Dr. Staddon, the persistence of Kristine's daily calls to the hospital or the threat of the two of us camped out in their offices for two days, but something worked. Despite a 0% predicted likelihood from the hospital of getting an appointment any sooner than 3 weeks out, Kristine is now scheduled to see Dr. Patel this coming Monday morning at 9am.

I'm not really one to believe in astrology. However, there is no other explanation for this serious of good fortune other than the luck that a Leo draws to them during their birth month.