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.