9/30 - Hallucinations

Little wooden men; a room full of fairies; shark attacks; anonymous, incessant talking. These are just a few of the hallucinations and thoughts that have haunted Kristine over the past week in what has proven to be her most emotionally trying cycle.

The thoughts started Thursday when uncontrollable images and sounds began taking control of Kristine's mind. She tossed in bed complaining, "they won't stop talking, I can't make them stop." She would say that the room was full of people, sitting on the bed or standing all around her. Sometimes the voices threatened to take her away and other times they just spoke to one another about her.

Kristine could not relax and could not sleep. Her mind spun out of control sending her into a desperate emotional state. We turned on the sound machine, but the crashing ocean waves that had previously pacified her became a playground for the relentless creatures who occupied her every thought. While she will look back on some of the images with laughter -- for example, David Hasselhoff posing as the grim reaper -- the collective experience is one that she is already trying to forget.

The nurses at the cancer center were not surprised by the hallucinations. They are apparently a side effect of the chemo drug IFEX. And although it seems strange that this is the first time Kristine has experienced this particular side effect, we've learned quickly through the course of this process that nothing is constant -- there always seems to be a new surprise when you least expect it.

By Friday, Kristine had just about had enough. Her mother and a couple of the nurses found themselves convincing Kristine to stay and finish her treatment after she had threatened to quit and go home. I assumed at the time that this was an emotional climax spawned by frustration and exhaustion -- a passing reaction. I now understand that the notion of discontinuing treatment, at least in its current form, is one that Kristine is taking very seriously. With her mind returned, clear and lucid, she expresses this desire definitively. She's hit the wall in the 20th mile of this marathon and is having trouble imagining the finish line.

The next few days will determine just how serious Kristine is about not receiving more chemo. She stated today that she plans to call our oncologist on Monday to give him the heads up on what she's thinking prior to her nadir appointment on Tuesday. My guess is that he'll not be greatly surprised by this, I'm sure Kristine is not the first to approach him with a request to shift course in treatment.

I'll keep you posted with the doctor's response.

9/25 - The Third Stage

Kristine is back in chemotherapy this week. It is the first of four cycles that she'll undergo lasting through the end of the year. The first two days have been a little tough on her. She has been sleeping for most of the day. She woke up this evening thinking it was Wednesday. Toward the end of her last set of cycles it was almost as if she had built up some immunity to all the medication. This was clearly a short term effect, which is probably for the best since this isn't the kind of thing that anyone should get used to.

The cycles are a little longer this time (5 days instead of 4) and the chemo drugs while fewer are less intense. Kristine's mom is in town for this cycle. It is always a big help to have her here. This is especially so this cycle since I am working through the week.

I'll keep you updated on Kristine's progress.

9/5 - Another Few Months

It has been a long, exhausting road. Kristine has spent half of a year either consumed by an intense chemotherapy regiment or weakened by its occupation of her body. She has endured the physical demands of a major surgery to one of life's critical organs as well as a number of major blood vessels. Through all of this she has maintained a tremendous level of courage, fortitude and resolve. Although I doubt she knows any other way to live her life.

But all the needles, hospital visits, time lost and time erased, pain, discomfort, sleeplessness and general lack of normalcy over this extended period of time has not occurred without taking a toll. While the scars that run down Kristine's chest have healed well in just a couple of weeks, the process of healing mentally is slow and easily thrown off course. And nothing can mess with the mind quite like dealing with news of additional treatment.

We met with Dr. Staddon today for the first time since Kristine's surgery. He was happy with the outcome of the pathology studies that showed 90% of the resected tumor to be dead. He commented on how amazing Kristine was doing clinically for someone who had just recently had the operation she did. And he outlined the next steps in Kristine's treatment plan.

Although we knew from the outcome of the surgery that radiation would be necessary in a small area near Kristine's shoulder and that additional chemotherapy cycles would be necessary (or at least highly recommended) to reduce the likelihood of future recurrence, neither of us was prepared to hear it in such certain terms. The doctor's plan includes 4 additional cycles of chemo that will begin on September 24th -- this time one drug (Ifex) instead of two, over five days instead of four, every third week. Kristine will also receive local radiation once everyday for a full month beginning in October.

The reality of another 3+ months of this tiring routine hit Kristine hard -- the progress of mental healing almost immediately blocked if not reversed. For me the sadness and disappointment in Kristine's eyes coupled with my own recognition of the difficulties in managing her treatment schedule, my job and the daily responsibilities of life sent a sharp and overwhelming stress coursing through my system.

But like everything else we have been through, we will manage our way through this, keeping perspective on the fact that this is all quite positive a prognosis and there seems to be a light at the end of the tunnel. As Kristine said to me the other day, shortly after we had finished a fairly trivial argument stemming from pure exhaustion and frustration, "we're doing OK."

We're doing O.K.

9/3 - Relaxing Labor Day

Kristine and I have been taking it easy these past few days after a couple of hectic weeks. Kristine is doing well but is still in some pain. She has been taking short walks to build up her energy and climbing the stairs is becoming less and less strenuous -- although she still needs to stop to catch her breath at the top.


Kristine's parents headed back to Michigan on Sunday morning to enjoy the last weeks of summer. Although it's nice to have the house to ourselves again, we'll both miss the evening card games and the help that they provided during their stay here.

With family gone and me at work, Kristine will be welcoming company during this next week to pass the time and provide emotional support. So, if you're in the area and feel like spending some quality time with Kristine, feel free to call ahead and pay a visit.

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.

7/31 - Rat-tatoo-lle

On Monday, Kristine decided to use her head as a canvas and got a tattoo. Actually just a henna tattoo, which is like a thick ink that temporarily stains the skin. I thought it was fun walking around the city and seeing peoples' reactions. Not just their reactions to the tattoo, but also to Kristine's bald head, since this was really the first time that she had "exposed" herself in public.

Kristine's PET scan was seamless. We should hear back from Dr. Staddon's office with the results in the next couple of days.

Our plans for traveling to Houston have morphed a bit. Kristine's cousin Cris was able to get an inside tip from her family's doctor who works at MDA. She advised us of the hospital's strict policy for reading biopsy slides --they require a full 5 days to process them. So, instead of sitting in the office on Thursday and Friday, we are shifting our office stake-out to Monday and Tuesday in hopes of improving our odds at seeing the Oncologist.

Ryan

7/29 - PET Scans and 2nd Opinions

It's been a while since my last post (21 days to be exact) and not a day has gone by without Kristine reminding me of my negligence in posting to the blog. This is not because she is particularly excited to read what I have to say about her day to day activities, but rather that she is diligently passing along your feedback, the most common and frequent of which is, "I check the blog every day. Why has Ryan not written?" Well to appease this restless blogience (a blog audience) Kristine and I have come up with a solution. I will continue to write from time to time. However, since Kristine has some extra time on her hands she has decided to take on some of the regular postings. I hope you enjoy. As for today, it's been so long that I hardly know where to begin.

In my previous post, Kristine had just finished her last cycle of treatment. She took the first week or so to recover and rest, but more recently is back to her old self -- running from place to place, visiting friends and enjoying her renewed energy. Her thrush continues to linger and her hair is slow to return, but otherwise she seems full of health and has started to gain some weight back. Kristine jokes that she doesn't feel like anything is wrong with her at all.

Her parents returned to Michigan after spending a few weeks with us (her mother was here during Kristine's final chemotherapy cycle). They plan to return for Kristine's surgery, which will likely take place in late August. I know it means a great deal to Kristine (and to me) that they've taken so much time to help and be here for support.

Kristine has also had a couple of other friends come into visit from out of town. One in particular is worth a special mention. Barbara, a friend from when she Kristine lived in San Diego, wins the award for most diligent supporter. She has sent a card every single day since Kristine was first diagnosed with cancer. I wouldn't be surprised if the post office makes her an honorary spokeswoman.

Last week we met with Dr. Staddon to review Kristine's latest round of CT scans and to discuss next steps. Kristine, her parents and I left the office feeling positive about the conversation we had. Dr. Staddon was very pleased with the CT scan results. Although there was no major change reported in the size of the heart tumor from the previous scan, he felt that this was a good indication that the mass was inactive or dead. He also gave us more confidence regarding the potential, but ambiguous, mass in Kristine's shoulder, under her clavicle. This presentation has been an ongoing source of uncertainty. Scan results have communicated mixed information about a potential mass in this area interpreting it to be either scarring or tumor. The latest report stated, "In the region of the previously described enhancing soft tissue lesion located posterior to the right distal clavicle there is a small amount of residual soft tissue that may represent residual tumor vs. scarring." The uncertainty is related to just how far up Kristine's veins the tumor extends. Dr. Staddon articulated that no risk should be taken and that surgery should seek to extract whatever soft tissue is present in this vein at the same time the heart tumor is being extracted. It was a relief to discuss this topic with a definitive response from Dr. Staddon. Kristine especially felt more confident.

As for next steps, several things were discussed with Dr. Staddon. We discussed scheduling a follow up appointment with our heart surgeon, Dr. Bridges. In addition, we would need to meet with a vascular surgeon to discuss extraction of the soft tissue from the vein. Also on the agenda of topics was the potential for a PET scan. This is an imaging procedure that measures glucose metabolism of cells. Since cancer cells utilize glucose at a faster rate than other cells, the scan can differentiate malignant cells from healthy cells. The scan measures the uptake rate of malignant cells to determine how rapidly they are growing, if at all. We have long know that our insurance provider will not cover a PET scan for Kristine's particular form of cancer. However, we are willing to cover the cost in an effort to get the most complete understanding possible of Kristine's situation. With the research rate that Dr. Staddon can secure, the cost is actually not very high. Kristine is scheduled to have the procedure done on Monday and results will follow on Wednesday.

While Kristine will proceed with taking all necessary steps to receive proper care in Philadelphia, we have also been working to get a second opinion at MD Anderson in Houston. This has been challenging to say the least. As a large hospital, it will not commit to an appointment until all referrals have been approved. However, it's an out-of-network provider which requires us to prove that it's a medical necessity for Kristine to receive an opinion from this particular institution. We are justified based on her rare form of cancer and still rarer presentation of the disease, but getting through the bureaucracy to prove this takes time --time that Kristine doesn't have. Dr. Staddon has been a great help, contacting one of the hospital's sarcoma specialist, Dr. Patel. But even as an insider he is having a hard time wading through the bureaucracy. Kristine had planned on going out to Houston for a personal trip this coming weekend at which time we thought we could also meet with Dr. Patel. But with three days left and not much progress made, we may have to plan a separate trip closer to Kristine's surgery. We should know more on Monday.

7/8 - A Battle Won, Others Still to Come

Absorbing her final few drops of hydration fluid this evening, Kristine officially finished her final chemotherapy regiment. It's been almost five months since her first symptoms presented themselves on our ski vacation in Colorado. I think I speak for both of us when I say we feel completely turned around, not certain as to what exactly has just happened. While all time is warped by individual perception, the past five months for us know seems like an entire extra year went by and we barely blinked a second time.

The most difficult thing to grasp is that this is just the beginning. It's easy to get caught up in the victory and forget that the disease (although hopefully smaller and less harmful) is still there. This battle is complete, but there is no clear winner and still more battles to fight. The most imminent of which is surgical extraction. This is something that Kristine is having the hardest time dealing with emotionally. She has gone through so much in the past several months with little concrete affirmation of success. I read a great analogy that a cancer survivor had written on the topic of finishing chemotherapy. She said it's like a dog chasing a car and actually catching it, what now? To further complicate matters, Kristine's test results (CT scans and echocardiograms) show conflicting information. For Kristine (and all of us), this just creates greater uncertainty and anxiety for what's to come.

I've stood beside Kristine through this entire process and I can honestly say that I have only the faintest conception of what she has been through. After all, this isn't like a really bad cut that you can compare to a lesser one you recently had, simply projecting what it might have felt like if your cut had been 10 times as large and as painful. The emotional and physical distress independent to one another would be enough to send most of us over the edge, let alone having the two working together to compound their collective weight.

The short term physical effects of chemotherapy on Kristine are easy to report. There are some obvious, well known things such as her bald head and her significant weight loss (it's the lowest it has been since she was a teenager). But there are also the lesser known effects. Kristine has frequent hot and cold flashes and night sweats. Without eyelashes to prevent them from sticking together she has to stretch her whole face to open her eyelids. Her sense of smell has been enhanced which aggravates her nausea. She has seen a recurrence of fungus in her mouth (Thrush) causing swelling and soreness in her tongue. Her overall skin tone has yellowed and the folds of her knuckles and palms have taken on a dark brown tone. Her finger nails, like the inner ringlets of a split tree trunk, show white lines indicating the weeks of her treatment.

All of these physical manifestations are only temporary set backs and are likely to disappear in the next few weeks. The emotional struggle, however, will be something Kristine must endure until even well after any validation that the cancer is gone. The questions will continue to linger about whether the disease is truly gone or if it will come back.

For now, we are just thinking about getting Kristine through her nadir week. One day at a time.

7/2 - Che-mo, No-mo': Final Round

Kristine began her sixth and final round of chemo today. She always has a lot of anxiety going into any treatment cycle and this one, being the last, was no different. In fact, her anxiety was probably heightened this round knowing that all likely next steps are fairly uncertain and a bit scary.

The cancer center was booked solid today. Last Thursday and Friday there was a power outage in the building and surrounding area causing the center to temporarily close down for two days. This, of course, meant rescheduled patients and, in turn, early Monday morning delays. Rescheduled appointments coupled with a short holiday week is a recipe for mayhem. We didn't see the doctor until almost 11am. This put Kristine on track for a late night. Since her treatment wouldn't start until almost 1pm we knew we were going to be up until around 2am. To add to an already frustrating morning, Linda (the only oncology nurse that has had any success accessing Kristine's ports) was on vacation for the week. Kristine became instantly upset at the thought of port troubles. Fortunately, Margie (another oncology nurse) was able to access one of the two ports, enough to get us through one last week.

Kristine is doing pretty well though now that the cycle has begun. There is one new symptom though that she discussed today with Dr. Staddon. Kristine has been experiencing rapid but regular heartbeats (a type of arrhythmia) when she engages in even minor physical activities, the occurrences of which have been increasing. Dr. Staddon thought this was cause for concern and referred us to a cardiologist for closer inspection. Kristine has an appointment next Wednesday to get hooked up to a Holter Monitor (a device worn with electrodes to track the variation in heart activity) for 24 hours. Although this is very concerning, it is likely related to the mass in Kristine's atrium, further underscoring the need for surgical extraction of the tumor.

6/17 - Appointment with the Surgeon

Kristine's 5th cycle is officially over after finishing her weekend IV fluids. She had a tough Thursday night after a single raspberry turned her nausea into a string of vomiting episodes. She felt pretty good for the rest of the weekend with less nausea than in prior cycles.

To continue where I left off in the last posting I'll jump back a week and a half to when we met with the heart surgeon, Dr. Charles Bridges. Our appointment started out with an introduction to Dr. Bridges' surgical assistant, Alice Isidro. Since Bridges was running behind (he fit us into his schedule at the request of Dr. Staddon within a week when he's normally booked months in advance) we had some time to talk with her. Alice was a big cheerleader for Bridges, pulling out a multitude of factoids about his expertise and credentials. She explained his degrees (a B.A. and M.D. from Harvard, a Masters in Electrical Engineering and Doctorate in Chemical Engineering both from MIT), his recognition in Philadelphia Magazine's ranking of top regional doctors from 2004-2007, his recognition in the Guide to America's Top Surgeons, his position as chairman of the Workforce on Evidence-Based Surgery for The Society of Thoracic Surgery (an organization that authors standard surgical procedures) and the recipient of some huge government grant for his current research (she mentioned something about it being the largest ever given in his field, which I have not been able to confirm). She went on about how well respected he is in his field.

Quite a bit of time had passed and we had grown a bit irritable from the wait. Dr. Bridges joined us after almost an hour and a half. He had a cerebral manner about him, while still remaining very approachable. He apologized for his delay explaining that he had been reviewing all of Kristine's scans and had contacted Dr. Staddon to get the latest on her progress and treatment before our meeting. He proceeded by explaining what he had seen from the scans. It appeared from the CT scans that there was a sizable tumor in the right atrium of the heart (one of four chambers of the heart where blood, depleted of oxygen from the body, is first deposited). There was also a string of mass leading up through the superior vena cava (the main vein leading into the heart from the head and neck). He confirmed that there had been material shrinkage in the mass from the earlier scans. He said that it was unclear how much of the mass was tumor and how much was clot. In other words, the size of the mass in the CT scans could be obscured by clotting that accumulated around the tumor.

We jumped right in with our questions. Our first and most pressing was, had he ever seen and operated on any similar cases. He affirmed that he had operated on several patients of Dr. Staddon's where tumors had formed in the heart and surrounding vessels. He described a recent surgery where a patient's tumor was so large that it required the reconstruction of the entire back of the heart. He immediately pacified our visceral anxiety explaining that Kristine's diagnosis was no where near as severe. In fact, he expressed that the surgery would be an "easy one," that is, as far as heart surgeries go.

Bridges explained that the method of surgical procedure would depend on the results of further testing, specifically an echo-cardiogram that would better represent the topography of the area. He did talk about two options. If the mass in the superior vena cava does not reach too far up through the vessel than the procedure would involve a small incision in the right side of the chest, midway down the rib cage under the arm. If, however, the mass extends into other veins in the chest the incision would be made near the sternum in the center of the chest.

One thing confused both Kristine and I. During the entire first half of our conversation with Dr. Bridges he never mentioned the tumor that was previously described under Kristine's right clavicle nor the metastasis tumors in her lung. When asked Bridges seemed puzzled by the question as if he had not been adequately briefed on these other masses. He began to look through the CT scan reports. He read back that the two masses previously thought to be metastasis in the lung were no longer visible and were likely pulmonary emboli (blood clots) that resolved themselves from the blood thinner that Krisitine has been taking. He went on to read that the subclavicular mass was open to interpretation and was thought to possibly only be a bulge in the blood vessel. Bridges explained that before proceeding he would need to discuss this in further detail with Dr. Staddon and possibly a vascular surgeon to ensure that he has all the information.

In short, we were impressed with Dr. Bridges and comfortable with his ability to do the job. We are, however, a little less comfortable with the still ambiguous diagnosis of the subclavicular tumor. Upon questioning Dr. Staddon about it, he responded that he was not convinced that it was a tumor at all, referring to the report from the CT scan.

Our realization is that we've entered the gray area of medicine. The point where imperfect tools and educated theories are the only pieces of data from which to based decisions upon. It is for this reason that we have requested a second opinion. Dr. Staddon has agreed to reach out to his colleague, the chair of the sarcoma department at M.D. Anderson in Houston, TX, Dr. Robert Benjamin. Although we will likely continue Kristine's treatment at Penn, a second opinion will serve as added assurance that we are proceeding in the right direction.

Kristine has her nadir appointment this Wednesday.

6/13 - Cycle 5 Update

I'm back online with a newly reformatted hard drive and an updated immune system for my computer including anti-spy, anti-virus and anti-phishing software. Hopefully this solves the problem and doesn't further disrupt my ability to blog.

As for Kristine, she began Cycle 5 this past Monday, receiving her own download of anti-phishing software in the form of chemotherapy. Monday began as it usually does. We meet with Dr. Staddon first to discuss Kristine's condition and then it's off to the treatment area to begin the five hour treatment process. And, as seems par for the course on these Monday mornings, we began with issues accessing Kristine's port. Despite our 9am arrival time the troubles with the port held up Kristine's treatment until about 12am. This makes for a long day. We closed the treatment center with the nurses at around 5pm only to have to go home and administer the rest of Kristine's IV medication, a process that would end around 1:30 in the morning. Fortunately though both ports were accessed without too much pain for Kristine, including the access point that couldn't be used at all in all last cycle.

Our meeting with Dr. Staddon on Monday morning focused mainly on our prior Wednesday discussion with Dr. Bridges, the cardiothoracic surgeon to whom Staddon referred us. Which brings us to a recap of our meeting that I have not yet written about. However, I will have to leave you in suspense. Although I'm sitting right next to Kristine while blogging, she believes that me on a computer is as good as her being alone. So you'll have to excuse me, I have feet to rub. I'll try to get around to our appointment with Dr. Bridges sometime later this week.

6/12 - Technical Difficulties

I am very sorry that it's been so long since my last post. Kristine and my online bank accounts were compromised by online phishing. Wachovia actually alerted us to the potential problem after spotting a couple of checks, written just a few days prior, that were flagged as fraudulent. Upon further examination of the check images it was clear that I had not written the checks nor ever heard of the individuals to whom the checks had been written.

Anyway, as a result I've had to reformat our computer's hard drive to ensure removal of all spyware traces. And since solutions to technology problems are never simple, I spent a good part of the past week reloading important applications and trying to fix our online connection.

I'm back online and ready to give you all the details of our appointment with the surgeon last Wednesday and the beginning of Kristine's fifth cycle. But not tonight. I'm working on about 8 hours of sleep over the past two long days and need to rest up for another. But I promise that you will have an update by Thursday morning.

6/4 - No Surgery After All

Kristine entered the waiting room after her procedure a little before 2. She seemed to be walking fine, clear of mind but with tears in her eyes. I, of course, was completely confused. The last port surgery Kristine had she could barely function for several hours after the procedure.

It turned out that there was no procedure (at least not surgical) and the tears Kristine shed were those of relief. The surgeon examined the ports under x-ray and was able to access the first port just fine (that is, with only a few attempts at poking Kristine with the needle). This is the same port that was not used in her last cycle of therapy due to complications. All it required was a little bit of an angle to get the needle in.

As for the second port that felt as if it had flipped onto its side, the surgeon determined that this one was also fine. He said that the ports naturally move around with weight loss and muscle movement. And although it can cause some inconvenience and discomfort at the time its accessed, he didn't feel it was worth opening her up to fix.

So all good news today and a huge relief for Kristine. Hopefully when next Monday comes both ports can be accessed without issue. As for now, our next step is to meet with the cardiothoracic surgeon on Wed afternoon to discuss Kristine's case.

6/3 - Good News, Bad News

This past week was a roller coaster for us. Kristine's temperature fluctuated from normal to near 101 degrees for a good part of the week. Since she is susceptible to infection in the week following chemotherapy, it's always a bit scary for us when fevers hits. The oncology team uses 101 degrees as the guideline for seeking medical attention. So, you can image our panic as we watch the thermometer creep up above 100. Fortunately, my mother was in town to help while I was at work and Kristine's fever never really reached a critical level.

On Friday morning, anxious about her sporadic fevers and the potential of a trip to the center to receive antibiotics, she ran her fingers over her port, an instinctive reaction at the mere thought of visiting the cancer center. She noticed what felt like the edge of her port. It felt as if the disk shaped implement was no longer flush with the skin and instead was protruding from her side.

Kristine discussed the issue later that day with Dr. Staddon's office. They felt it was necessary to get the issue resolved as soon as possible for fear that it would worsen or cause complications during her next cycle, just a week away. She is scheduled for an emergency surgery on Monday morning to examine the port and get the implement functioning properly. I don't want to cause undue alarm at the sound of the words "emergency surgery" though. In fact, the escalated timing has more to do with our preferred surgeon's schedule than it does Kristine's health risk. However, her impending treatment in just 7 days is a contributing factor to the timing.

During the discussion, the Nurse Practitioner on Dr. Staddon's team also gave Kristine a surprising report from her last CT scan results -- some good news and some not so good news. The not so good news first. In reviewing the CT scans of her abdomen, the radiologists discovered inflamed pockets along her colon wall. These are thought to be formed from diverticulitis (a condition that develops when pouches called diverticula that form in the wall of the colon, become inflamed or infected). Many people live with the uninfected form of these pockets (a condition called diverticulOtis) without ever knowing they have anything wrong. Kristine's condition has likely became infected and worsened as a result of her low white blood cell counts and weak immune system. In general, this is not a cause for too much concern, at least not initially. It requires us to make minor adjustments to Kristine's diet, slowly introducing more fiber. If the condition worsens it could cause severe discomfort and require surgery to remove some of the colon. Let's hope it heals itself.

So now the good news (this is big). The radiologist also reported a sizable decrease in the size of the tumors that resides in Kristine's heart and vein. According to their measurements there has been approximately 20% reduction in the size of the masses from the last scan (the tumor clot at the heart decreased to 2.5x1.6 cm and the soft tissue mass in the subclavicular vein decreased to 3.8x1.7 cm). This is excellent news and further reinforces our confidence in the treatment she is receiving.

I'll let you know how the surgery goes.