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.

5/28 - Cycle 4, The Hard Part's Over

Kristine finished her 4th chemotherapy cycle this weekend. She was a little more tired, a little less nauseous, and a lot more emotional than in previous cycles. She's managed to stay strong and positive through every stage of this fight, but the medication and difficult regiment periodically constrain her optimism. Her emotional struggles are short and she always bounces back with an amazing amount of fight and courage in her.

One of her weak moments came on Thursday at the cancer center. Nothing in particular triggered the breakdown, it was more provoked by an accrual of constant discomfort and exhaustion. Linda, our oncology nurse, consoled Kristine and confirmed something that we had all suspected since her first cycle. She told Kristine that hers is one of the most difficult chemotherapy regiments that a patient can go through. She emphasized how amazing it's been to see the stamina and strength Kristine has shown over the past couple of months. It's encouragement like this that helps Kristine to move forward.

The fact that Kristine's nights have been less than satisfying in the sleep department hasn't helped her emotional state. She's been consistently waking up in the middle of the night in cold sweats and in general discomfort (fortunately without fever). She eventually gets back to sleep but it's not without a pill and bit of restlessness.

We're headed into the second week of the cycle -- the nadir week. Kristine has an appointment with the Oncologist on Wednesday to check her blood counts as well as another CT scan that afternoon. This scan will give us another data point on how the disease has progressed. It will also arm us with the latest information to discuss with the Cardiology surgeon, with whom we have an appointment a week from Wednesday. This will be the first of many consultations to determine possible next steps.

5/22 - Continued Port Trouble

We were both pretty exhausted this morning after our long night. Kristine slept through most of our time at the cancer center. Even I dosed off a couple of times. Tomorrow is another early morning.

Linda, our oncology nurse, attempted to access the second, rear port after several failed attempts yesterday. Today's outcome was no different. Linda said that it was as if the port, which is a tiny puck-shaped canister with a rubber access gasket on top tucked just beneath the skin, had flipped over. Linda suggested that we get a port study done to understand the problem better, but having gone through this a few cycles ago Kristine was in not mood to cause further irritation to the area (the last port study the hospital poked her with a needle about thirty times before calling it unsuccessful only to have Linda access it a week later). For now it was decided to continue with just the one port and try again next cycle.

Otherwise, Kristine seems to be more tired than past cycles. Hopefully the extra sleep she got yesterday and last night with help.

5/21 - Cycle 4 Begins

Each chemotherapy cycle follows a similar formula, but like a game of Plinko the chips never quite follow the same path. (As bad as it is, I couldn't resist the Price Is Right simile after the tribute to Bob Barker the other night.) Monday morning starts at around 9am at the cancer center. We check in, settle our co-pay with the reception desk and within a few minutes Kristine is called in to give blood for analysis.

We proceed to one of the examination rooms to wait for Dr. Staddon and his nurse practitioner. When they arrive they begin by reviewing Kristine's blood work and clinical condition. Today they pay particular attention to Kristine's INR or International Normalization Ratio. This is the standardized measurement of time for blood to coagulate (clot). Since Kristine has recently changed her blood thinning medication it's important to calibrate her dosage to achieve an optimal coagulation level -- in her case 2.o. Last week, at a special office visit intended solely to gauge her INR, her reading was 1.0. This news sent the oncology team into a mini frenzy until Kristine disclosed her negligence in taking Coumadin for the two days prior. Her level this morning was 1.4 so her dosage was increased.

Discussion regarding longer term next steps typically follows. Dr. Staddon feels strongly about getting a cardiac specialist involved in Kristine's case early to, as he puts it, "start thinking about [Kristine]." He has encouraged us to have an initial consultation with one of Penn's top cardiac surgeons and a favored colleague of his, Dr. Bridges. Getting an appointment so far has been difficult as Dr. Bridges has been traveling in China for the last few weeks demonstrating state of the art techniques in "bloodless surgery"--techniques of which Penn is on the leading edge. We look forward to meeting Dr. Bridges and getting his perspective on Kristine's condition. Of course, given her rare case and the magnitude of risk with a potential procedure we'll also be exploring options for a second opinion -- it's important to both of us to find someone who has experience in operating on a similar situation.

With the examination and some dialog about possible next steps complete, we head across the hall to the treatment area, a large room with about 25 reclining chairs, most separated by a shallow frosted glass partition, all encircling a large central nurses station. Kristine is privileged in her seating arrangement. The port used to administer her medication is in her hip rather than in a more typical shoulder location. Since this is a sensitive and more private placement, she gets dibs on one of a handful of small private rooms.

Mondays usually starts with some delay. The nurses often have new patients who aren't yet familiar with the process and need more education. Linda is our oncology nurse today. We've requested her the last couple of cycles. She is one of the few nurses who seems to really understand Kristine's atypical port placement and has had success accessing it with minimal discomfort. Today, however, even Linda had trouble. One of the access points was implemented seamlessly but would not return blood through the tube. The other proved troublesome, as it has historically, this time producing a painful stinging in Kristine's side when accessed. Linda was able to get a blood return at the first access point after treating it with "clot buster." But as for the second, she thought it best not to irritate it any further and try again tomorrow. Kristine appreciated this decision.

With one port access in place Linda began administering the pre-meds. It was 12 noon at this point, an indication that this would be a late night. Kristine gets five pre-meds before receiving her chemotherapy drugs. These include Aloxi (a long lasting anti-nausea drug), Decadron (a multi-purpose steroid used in part to prevent swelling and allergic reactions), Ativan (another anti-nausea drug), Lasix (a diuretic or "water pill" that aids in the elimination of water retention) and Mesna (a drug that bonds with a harmful byproduct of one of the chemo drugs, IFEX, to render it inactive). Once the pre-meds have been administered the chemo drugs can be given. First Adriamycin (Doxorubicin) is given, which comes in the form of an injection tube, then IFEX (Ifosfamide, chemically related to the nitrogen mustard and most active in the resting phase of the cell). Ifex is given via an IV drip bag combined with a saline solution. Finally, a Sodium Bicarbonate and electrolyte mixture is given intravenously to prevent other side effects and replace fluids.

We didn't leave the center until around 4pm today and since Kristine needs to receive two additional doses of Mesna intravenously at home each four hours apart from one another, we didn't finish until around 12:30am. This makes our 8:30 start tomorrow a bit more difficult, but hopefully we will have a smoother day.

5/14 - Week 2, Cycle 3: Lovenox and Lucas

Week two of Kristine's third cycle is complete and she's been feeling very well with an amazing amount of energy. Her nadir appointment with the Oncology team went well last week. Her blood cell counts were almost as low as they could go, but this was as expected. She received a shot of Aranesp to stimulates her red blood cells in order to prevent anemia.

Since February 13th when we were skiing in Colorado and first learned of Kristine's condition, Kristine has been getting a shot of Lovenox (a blood thinner administered subcutaneously) to prevent further clotting in her blood vessels. She has received the shot twice a day for 81 days, once first thing in the morning and again before bed. She was taken off the injection about a month ago and given a pill form called Coumadin. However, the swelling in her neck and chest increased and we immediately resumed the shots (I, and a few other lucky visitors, had taken on the task of administering the shot to Kristine's abdomen since she understandably had trouble giving it to herself). But a little over a week ago Kristine started taking Coumadin again in lieu of the shot and this time it seems to be working well with no related side effects. As you can probably imagine, this was a huge relief to Kristine and for me.

I was careful to say "related" above since new side effects consistently crop up. The latest is a swollen, white-coated, tender tongue. It is not painful but is causing Kristine some discomfort especially when she eats. The doctor prescribed Fluconazole, an antifungal medication used to treat several types of yeast and fungal infections. The doctor believes that Kristine has Thrush a common side effect of chemotherapy. All of us naturally have fungus in our mouths which our bodies, under normal conditions, defend against. However, with Kristine's immune system at it's lowest point she is susceptible to even the most commonplace, and otherwise harmless, infections. The medication seems to be slowly relieving her symptoms.

On a note not related to Kristine's health but certainly to our daily lives, Lucas, our foster dog of almost 5 months, was picked up on Saturday by his new parents. Before we were ever aware of Kristine's condition we agreed to take on a foster puppy. At the time the 7 month old Catahoula Leopard Dog had been rescued from a house in Tennessee where he had been malnourished. Kristine had left our names with an organization called abuddyforlife.com that finds foster and adopter homes for rescued dogs. In January, we got the call to help Lucas.

It has been a long several months never mind the addition of a second dog and an abused puppy at that. Nonetheless, we had nearly resigned ourselves to the idea of keeping the pup. But a couple of weeks ago a woman from Rochester, NY inquired about Lucas' profile on the rescue website. She and her husband went through the adoption process and drove down 5 hours on Saturday morning to pick him up. It was a bittersweet ending for Kristine and I. As much as we had grown weary of cleaning up his accidents, calming his hyper, playful spirit and handling 2 dogs during daily walks each morning and night, Kristine and I couldn't help but get attached to the little guy and feel guilty for passing him on to yet another home. Even Rufus has been hanging his head realizing that his little pal may not be coming back. Ultimately, with all that has hit our lives we know it's for the best. We're happy that we were able to save his life and find him a good home out in the country where he can run and get some of that extra energy out.

5/2 - Day 2&3, Cycle 3: All is well

Days two and three of this cycle have gone smoothly. Kristine's been able to leave the cancer center around 2 each day. Our departure time is important since there are medications and fluids to administer at home. The later we leave the center, the later into the night she has to be hooked up to the IV. (On Monday, our 4:30 pm departure kept us up until around 1am.)

Kristine's appetite is strong and she's been getting out for a walk each of the past few days after treatment to enjoy the beautiful whether. Nausea is starting to set in sooner than it did the last cycle. However, we know now to be more disciplined with her anti-nausea medication which should help.

Other than that not much to report.

4/30 - Day 1, Cycle 3: A Gleam Hope

I'm not sure if we were more alert this morning after a phase of recuperation or if the gradual transformation of nature in just two weeks time (our last visit to the oncologist) had truly accumulated to a point of enthusiastic recognition. But as we were driving by the Pennsylvania Hospital we were awestruck by a magnificent display of spring bloom in the gardens of the southern edifice. What we were viewing was an enchanting spectacle of landscape at the site of the nations first hospital -- an 18th century building with a statue of Benjamin Franklin (the co-founder of the hospital) as its focal point and the harmonious blend of wisteria vines, azalea scrubs and multicolor tulips surrounding the semicircular lawn.

We didn't realize at the moment of our observation that this scene was an auspicious omen of hope. A symbol of the incredible power of nature's ability to transform while aided by the meticulous and dedicated attention of human care. Our 30 second sighting would soon poetically foreshadow the good news we so badly needed.

There is an escalated, palpable feeling of anxiety with each day before the first day of a chemotherapy cycle. For Kristine, the beginning of a cycle means slipping into a miserable trance where the only recollections she has are associated discomforts of pain, bad tastes and nausea. She held on to her last day for as long as she could by staying awake early into the morning talking to her friend Elaine who was visiting from San Francisco. In the days leading up to today she had become overwhelmed by an intense concern that the pressure she feels in her shoulder had increased which in turn led to doubts about her treatment. This concern had been looming without immediate evidence of her medications' effectiveness. In our early conversations with our oncologists it was discussed that without the success of chemotherapy the odds of survival, statistically speaking, were substantially reduced leaving fewer options.

Our conversation today, even though inconclusive, was very encouraging. Dr. Staddon was very pleased by Kristine's physical and mental demeanor. Review of her scans appears to show positive signs of tumor reduction as well as complete disappearance of any swelling in Kristine's subclavicular lymph nodes (those under the collar bone). Apparently, it's difficult to decipher fully from the scans, but Dr Staddon and his colleagues hypothesize that what looks like a serious of tumors lining the walls of the veins, superior vena cava and the upper chamber of the heart may actually be one central (nucleus) tumor with a long tentacle-like appendage that runs through the other blood vessels. This is good news as it makes for a less difficult surgery. The bad news is that the surgery Kristine faces is likely to be fairly invasive (of the "open-heart" type) though pretty standard procedures these days (Regis was walking within 2 days).

So although the battle is far from over (it sounds like Kristine has 4 more cycles of therapy ahead over the next 3 months followed by surgery to extract what's remaining, this is at the minimum) the odds have flipped back in Kristine's favor with what looks like a successful chemotherapy regiment. And if all works as planned, this is just another example of nature's power to transform with the aid of human care, attention and let's not forget an overwhelming swell of hope.

Also, thanks for voting. It looks like Kristine's wig is pulling ahead but the bald look is not far behind.

4/29 - Vote for Your Favorite

Thank you all so much for your patience. I know a lot of you visit the blog almost daily so I'm sure it's disappointing (and even disconcerting) not to have updates for two weeks. My postings have come in waves depending on the stage of Kristine's cycle but ultimately it all depends on how she's feeling and what new challenge we're facing. However, as I've mentioned before, no news is indeed good news.

Over the last couple of weeks Kristine has been feeling really well. She's been spending time with local friends and even doing some shopping. And although shopping has always been a favorite therapeutic past time for her it has recently become more of a necessity. Kristine has lost weight from the treatment cycles so she's left having either to tighten her belt or to buy some new clothes. For Kristine there's only one solution. It doesn't matter how tired she is she can always muster up the strength to visit a few of her favorite stores.

This past Thursday Kristine had another CT scan and MRI of her neck and chest. Typically these scans are done after the third cycle rather than the second, as was done in this case. Dr. Staddon is taking extra precaution since the cancer type infecting Kristine is considered aggressive. The images will serve as a gauge to determine the effectiveness of the current chemotherapy regiment and potential next steps. Next steps could include changing the chemotherapy drugs, radiation or surgery depending on how the tumors have progressed. On Monday 4/30 we'll be meeting with the oncology team to start Kristine's third cycle and to review the results of her latest scans. This will be a pivotal meeting. It will not only begin to define the next chapter of Kristine's treatment but will also shape our understanding of just how formidable the disease is and the battle that lies ahead.
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LET THE VOTING BEGIN!

As promised, I have included photos of Kristine's new "cranial" styles as well as a poll for you to vote on your favorites. Kristine wants to hear your opinions so don't be shy. The poll allows you to view results real time so you can see what others think.

You can either view the photos below or see high resolution photos at http://picasaweb.google.com/ryanshawnmacdonald

4/15 - Day 7, Cycle 2: Another Cycle Down

It's been raining all day today (Sunday) in Philadelphia, one of the more relentless Nor'easter we've seen in a while. Kristine's spirits haven't been dampened though, the toughest part of her 2nd chemotherapy cycle is behind her. She finished the last of her intravenous hydration fluids this afternoon. No more flushing her port with saline (a process that leaves a nauseating taste in her mouth) and no more being attached to an IV for hours at a time. The feeling of nausea will begin to subside and she will reclaim a fairly normal appetite.

She received high fives from her sisters and me as the last remaining drops of potassium chloride were funneled into her port. It's a small milestone but one that symbolizes the upcoming two week stage of freedom and rejuvenation before entering her next cycle. Like the last cycle she'll need to be cautious for the next two weeks. Her white blood cell counts will remain low making her susceptible to infection and illness.

On Saturday we reached another milestone when Kristine, her sisters and I headed North to Ginnie G's, a salon and day spa that specializes in wigs and hair replacement. Ginnie, the owner, showed us to the wig room down a short set of stairs. The walls were lined with shelves of styrofoam busts crowned with cranial prostheses of various colors and lengths. Ginnie asked the standard set of questions: Real or synthetic (I couldn't honestly tell the difference), match your existing hair style and color or try something new? After trying on several pieces Kristine set her mind on one. It isn't electric blue, nor bright red, nor is it fashioned after Sanjaya's pony-hawk (although these were all great suggestions). It is, however, similar in color to her existing hair but a bit longer. She chose real hair over synthetic to improve her styling options (with real hair you can cut and style the wig just like you would your own hair).

After having her wig styled, Kristine moved on to the second step. She had her head shaved. Surprisingly it wasn't as traumatic for any of us as I would have expected. Kristine handled it with amazing strength. She looks very cute with her shorn cranium, even a little bad ass (pardon the profanity). Ginnie didn't shave down to the skin, more like a buzz style cut. Having worked with a lot of cancer patients Ginnie informed us that one shouldn't cut the hair down to the scalp during treatment due to the risk of infection and irritation. It's better to shave the hair short to avoid the mess and let the rest fall out on its own.

As for pictures and voting on the new styles, you will have to wait a bit longer. Kristine's not quite ready to reveal her new hair-do. She prefers to wait until her head is completely bald to conduct the voting. I did insert a little teaser for you all -- the remnants of Kristine's lost hair. It's up for sale on EBay but I don't think we can get the same million dollar asking price that Britney Spears' did. :)

4/12 - Days 3&4, Cycle 2: Chemo

The last couple of days were good for Kristine, at least as chemotherapy days go. Kristine's fluid retention levels remained low with the help of the diuretic she's taking. Her energy, although diminished, is healthy. Her appetite is sporadic -- things like oranges and smoothies that she would eat when nothing else sounded good have grown insipid from repetition. Overall though her health is as expected given all the medication she has absorbed.

As it seems for most days, the last couple have not come without their set of challenges. On Wednesday night we came back from the treatment center after another long day, started Kristine on her home intravenous medication and hydration fluids, and started watching the results portion of American Idol. (I am particularly engrossed in this season having taken part in an office pool where, I might add, I've consistently been among the top 4 out of around 50 participants. Sad I know, but it's one of my few guilty pleasures these days and serves as an excellent distraction.) In the middle of the show the power went out in our surrounding area and we were left in the dark for the rest of the night. No electricity meant no computer, hence no blog post.

Thursday was emotional for Kristine as well as her support team. Connie (Kristine's mom) will be leaving on Saturday and that reality has been difficult for Kristine. Mrs. Becker has been an enormously indispensable asset over the past month. Kristine and I could not have held things together as well as we have without her help. It will, however, be good for her to rejuvenate and get some semblance of her life back, even if it is just for a couple of weeks. (Lucas especially will miss the challenge of trying to steal her knitting yarn.) Emotions ran high into the night. Although Connie's impending departure was the catalyst for the day's emotions it seemed that even the smallest gesture of love or sympathy was met with tears.

For today, Friday, we are preparing to shave Kristine's remaining hair. The special voting blog post to determine the most popular head treatment will likely be installed in the next few days. As for my standing in the American Idol pool, I moved up the 3rd place after choosing the bottom three and the loser correctly (I'm sure you were itching to know).

4/10 - Day 2, Cycle 2: Chemo

Not much to report today. Kristine is doing well. She's very tired but is able to awaken for short periods to talk or even play a short game of hearts with her mom and sister Colette.

The hospital has therapy dogs visit the patients periodically. Today, Annie, a young Chocolate Lab, came by the cancer center (we really should have gotten a photo).

Colette did some research on wigs for Kristine (at the rate she's losing her hair she'll likely be bald by week's end). Apparently, many insurance companies cover the cost of a wig for cancer patients with a prescription. That's right a prescription. And like any prescription it can't just be written in English, the wig needs a medical term -- cranial prostheses. So, at some point when Kristine's feeling up to it she'll be fitted and fashioned with a new cranial prostheses (a wig) to treat her condition of alopecia (baldness) courtesy of our insurance company.

I also thought that I would share one last thing. I ran across a great article in the April 9th addition of Newsweek entitled, "My Life With Cancer." The author, Jonathan Alter a Newsweek corespondent, shares the story of his battle with cancer. His story is candid and honest and he offers some great insight from his own fight against the disease. It's worth the read http://www.msnbc.msn.com/id/17888476/site/newsweek/.

4/9 - Day 1, Cycle 2: Here We Go Again

Counter to what most would imagine the anticipation and anxiety surrounding this second cycle of chemotherapy, which began today, was far greater than the first. The limited experience we brought with us this time around gave us the knowledge and understanding to mitigate our fears. However, we were now burdened with the acute awareness of what was about to begin -- another week of chemotherapy.

For those surrounding Kristine this week meant more than just a hectic itinerary, long visits to the cancer center and remembering medication schedules. After all, we have become fairly accustom to these minor inconveniences over the past several weeks. Instead what lie ahead was much less superficial. The week of treatment represents the implausible reality of this disease and its occupancy. The dynamic and vivacious Kristine that brightens our mood, for a few days slips into an altered state, dopey and listless as the medication takes affect.

For Kristine, chemotherapy week has a different connotation. It holds needles, nausea, hazy sight, night sweats, breathlessness, the almost instant metallic taste of saline solution as it’s injected into the blood, the uncomfortable pressure of fluid retention, the prospect of another visit to the ER and the many other discomforts that the week seems to bring.

Kristine was able to enjoy her last few days before this next cycle of chemo with good friends from San Francisco (Alison, Leah and Megan) who were in visiting for the weekend. Their visit provided a needed distraction in the days prior to treatment. As Sunday neared and friends traveled home, Kristine’s anxiety about her treatment intensified. Although she knows logically that it will ultimately benefit her, emotionally it is difficult to get past the discomfort associated with the days to come. And who can blame her? I would most definitely be crying like a school boy if expected to endure such circumstance.

The first day of cycle 2 has come and gone and I'm happy to report that it wasn't so bad. Kristine is much more alert than she was at this time last cycle. She still has a very short memory for any activity that took place even a few minutes prior (a common side effect of the chemotherapy medication). But she is functioning well with a great appetite and energy level. She’s even bossing me around when she’s awake (a common side effect of being a Becker). However, I've adapted and figure that if I just hold out long enough she might just forget.

Until tomorrow.
Ryan

4/1 - Day 14, Cycle 1: Heading into Her Good Week of Cycle

As the adage goes, "no news is good news" and it certainly fits Kristine's story over these past few days. Kristine's been getting outside walking and enjoying the fresh air. Her weight is nearly back to normal (most of the retained fluid has disappeared) and her appetite is equally healthy. She still gets exhausted at even the mention of household tasks. Although I suspect that this is more a mental side effect of being waited on hand and foot over the past two weeks than it is from the chemo. Of course, I can't prove this with any certainty. So her mom and I will continue to do the chores when they need to be done and dance around like trained monkeys when Kristine needs a laugh -- after her miserable week of chemotherapy, I think we would do almost anything for a glimpse of her brilliant smile and laugh.

Kristine's cousin Cris (left inset) was in over the weekend and her Aunt Jan is in for the next week. Her mother will remain in town for a few more weeks until she heads back to Texas for a short reprieve. Having family in town has really helped keep her spirit high and attitude positive. And as you can image it's been incredibly helpful for me to distribute some of the burden. You can see just how helpful Kristine's dad Jim was with our dog Rufus and foster dog Lucas in the photo to the right. (In all seriousness he really was helpful... when he wasn't napping.)

I mentioned in the last blog that Kristine hasn't yet lost any of her hair. She had it cut shorter to minimize the "mess" (her words) when it does start coming out. She said this morning that her scalp felt a little funny... tingly -- the first sign of imminent alopecia (i.e., hair loss). And a few times throughout the day as she ran her hand through her hair more than a few strands detached freely into her fingers. She said that she will likely avoid brushing or washing her hair for a few days to prolong the feeling of a full head of hair.

3/28 - Day 10, Cycle 1: Nadir Point

Today was Kristine's nadir appointment with our oncology team. The nadir point is the point in her chemo cycle where her white and red blood cell counts are at their lowest. Her white blood cells (those that help fight infection) are only at about 10% that of the normal level (400 vs. the normal 4000 to 5000).

It was for this reason that Kristine's mom and sister would not let her set foot in the Rite Aid without wearing the surgical mask she carries with her in her purse. Of course, Kristine being as stubborn as she is, pulled the mask down around her neck the second she was out of sight.

The appointment went as expected and Dr. Staddon was very encouraged by Kristine's physical and mental state. She has lost much of the retained fluid that was causing her discomfort over the last week. Her energy level is very good, although she loses steam pretty quickly. She's eating well and catching up on some much needed sleep. Overall she is doing exceptionally well for just having finished a week of chemo. Next week she will be even better and preparing for her next cycle.

Kristine hasn't started losing any of her hair yet. However, she did say that she might consider posting photos of head covering options (including bald) for you all to vote on (there is a big "might" there). Also, depending on how she's feeling, Kristine may soon be writing a post of her own. So look for these special addition posts in the next few weeks.

3/26: Day 8, Cycle 1: ICU Discharge

I have just a quick update for today. Kristine was discharged from the hospital. Although we were all hoping to have her home early, no one was more anxious to get home than Kristine. Early discharge was nearly in the bag until one of the head nurses brought up concerns with Kristine's port (the small IV port implemented under her skin). The inspection led to a several hour delay. Only after a visit to radiology to inspect the port under x-ray were we able to leave the hospital -- around 3pm. Getting out of the hospital did a lot for Kristine's spirit. She was really ready to get out of bed and move her legs. Even this short walk made her very tired.

This week is Kristine's second since treatment began and the one following chemotherapy. It will be a difficult week as she will feel very tired and weak. The next milestone is meeting with our oncology team on Wed. This is what is called the nadir point. It is around this time when Kristine's white and red blood cells will be at their lowest, which leaves her susceptible to infection and anemia, respectively. For this reason it is imperative that Kristine avoid visitors that show any signs of cold or infection.

To explain why her blood cell counts will be low, chemotherapy drugs work by attacking or mimicking rapidly dividing cells at various stages of the cell life cycle (i.e., resting, growing, or dividing (mitosis)). The key term here is "rapidly" dividing. Cancer cell division is different than most normal cell division in that cancer cells do not retain the "recognition" function to stop dividing when old cells are replaced like normal cells do. Cancer cells continue to divide out of control to form a mass of cells -- a tumor. The trouble is that while chemotherapy drugs can find cancer cells and stop their growth, there are other cells in the body that also divide rapidly. These normal, rapidly dividing cells include blood cells, cells in the mouth, stomach and bowel, and hair follicles.

3/22-3/24: Day 4, 5 & 6, Cycle 1: Chemo, ER and ICU

We’ve had a busy couple of days pass. I myself was able to catch up on some sleep Thursday night only to deplete my reserved shut eye the following day with an all-nighter in the ER... I’ll get to that in a minute.

I recently received some advice from someone about living with cancer and treatment. It was never so real and true as it became these past few days. I was attempting to plan a time we could meet and catch up. He stopped me from thinking of a good time to meet. A man who lost his first wife to cancer and whose second wife is in recent remission from a brain tumor, he said, “Ryan, don’t worry about this. You’re going to be living day to day. There will always be some new surprise popping up that you didn't anticipate.”

Well surprises have certainly popped up lately.

On Thursday (Kristine’s final day of chemotherapy) we had just about finished in the cancer center. Kristine had dropped about 4lbs of the fluid she was retaining, which made the center's staff more comfortable with her condition. She started to feel a sudden shortness of breath and increasing pressure on her chest. We notified our oncology nurse and a wave of 5 other nurses rushed into check Kristine’s vital signs. Her “pulse-ox” reading (the percentage calculation of oxygen levels in the blood) had fallen into the 80s when it should be greater than 90%. The nurses administered oxygen and monitored her for a little while.

Dr. Staddon discussed the situation with us after Kristine’s oxygen levels had stabilized. There was discussion among the nursing staff of taking precaution and admitting her to the hospital. However, Dr. Staddon felt that Kristine quick recovery was a good sign and that she would be better off in a familiar comfortable surrounding at home. He felt that the risk of increased exposure to hospital grade infections outweighed the benefits of close observation. (Remember that chemotherapy lowers the white blood cell count – the basic structure of the immune system that helps fight infection and disease – thus increasing the chance of potentially dangerous infection).

The remainder of Thursday was fine. Kristine, her mom, her dad and I all got a decent night’s sleep. On Friday, Kristine’s good friend J.J. arrived from Chicago for a weekend visit. Kristine was feeling restless and anxious that morning. She was more lucid and aware without the stream of new medication she had been receiving the previous few days. But her awareness left her feeling more discomfort. She had trouble catching her breath and maintaining an adequate resting position. The shortness of breath seemed to worsen as the day continued. She complained of increasing pressure in her chest despite having lost a few more pounds of fluid. Around 9:00pm the chest pressure had become more uncomfortable and her temperature had increased to around 99.7 (we were warned that 100.5 was the tipping point where we needed to seek medical attention). The on call oncology physician wanted to be conservative and recommended that we bring her into the ER for a careful inspection. She underwent a new CT scan and EKG. After several hours the attending physician spoke to us about the medical team’s concerns. When compared to the CT scan from 7 days prior, the new scan revealed 2 additional clots in the vein where the original clot developed.

It's not yet clear whether these are newly formed clots resulting from tumor compression of the vein or embolus—fragments of clot that have broken off and traveled through the blood. The primary concern at this point is pulmonary embolism. This is where a fragment of the clot, or embolus, travels to the lung and blocks oxygenation of the blood. The doctors addressed this concern by adjusting the blood thinning medication that Kristine had been taking. At around 4:00am on Saturday morning Kristine was admited to the intensive care unit (ICU) for close observation until at least Monday. At which time we will review recommendations and next steps with our oncology team. Oh, and by the way, in case you thought that you read the above times incorrectly you didn't. Thanks to hospital and insurance beuracracy we were in the ER from 10pm-4am or 6hrs.

As for today (Saturday), Kristine is in excellent spirits. She’s the most alert she has been all week. She is very weak from the chemo, but hopefully that means it’s doing its job. So until Monday, it’s rest for Kristine’s weary support team and milkshakes and smoothies on demand for our brave fighter.

Ryan

3/21 - Day 3, Cycle 1: Chemo

Kristine finished the third day of her treatment without issue today. These days feel so long as we hope for signs of even the smallest bit of relief. The fluid retention in her upper body is still causing Kristine a lot of discomfort -- breathing, eating and moving herself around are difficult tasks. By the end of the day she had lost some of the fluid weight.

We got some bittersweet news from the doctor today. In reviewing the new CT scans more closely it seems that the main tumor in the vein of Kristine's chest is not only accompanied by metastatic tumors in the blood vessels of the lung but also a series of masses along the same vein leading into the atrium (the chamber of the heart where blood is returned from the body). This could be a very serious complication and disqualify Kristine for surgery if the tumors are all independent, free standing cells. However, Dr. Staddon's team reviewed Kristine's case with colleagues and there was agreement that all the masses appear to be and are likely to be part of the same mass structure. This diagnoses means that the disease is operable. The series of masses could be surgically removed as an entire structure. Of course, surgery is contingent on the success of the chemotherapy, but this news is nonetheless encouraging.

Thanks again to all of you who have responded to the blog or emailed. I am saving all of your communication for Kristine for when she feels up to reading all your kind words. (Right now she falls asleep before I can get the computer in her hands).

3/20 - Day 2, Cycle 1: Chemo

I will start labeling the posts for Kristine's treatment by the day and cycle. As I mentioned in my day 1 posting (3/19) Kristine will receive 3 cycles of treatment with each cycle lasting 3 weeks.

Day 2 of Kristine's chemotherapy was relatively uneventful. Kristine was very groggy and tired the whole day. She awoke feeling more swollen that ever. Since the oncology nurses have been weighing her every day we can keep track of her weigh changes. Since Friday of last week (only 4 days) Kristine had gained nearly 20 lbs just from fluid retention. 9 of the lbs were gained in just 24 hours. This is a factor of both the blood clot and the extra hydration fluids that she is receiving during treatment.

We ended up staying in the cancer center from 9-5. The doctor wanted to reduce some of the extra fluid that Kristine was retaining before she left for home. She received Lasix (a loop diuretic (or water pill) that prevents your body from absorbing too much salt, allowing the salt to instead be passed in your urine. Lasix treats fluid retention (edema)).

She is not eating too much. However, we have discovered the power of the milkshake. No matter how much she refuses to eat, she never refuses a milkshake.

Until tomorrow.

3/19 - Day 1 of Chemotherapy

Today was the first day of Kristine's chemotherapy. The day began at 9 and we left the cancer center at around 4. Kristine did really well and was feeling no pain by the end of the day. She received two drugs during her treatment, Adriamycin and Ifex, along with lots of hydration fluids and anti-nausea medication.

Returning home we met with our home care nurse. She walked Kristine’s mom and I through the steps needed to administer the post-chemo drug (Mesna) and hydration fluids. The whole kit was comprised of 3 large boxes of equipment and an IV pole and monitor. The whole experience was a bit overwhelming. The drugs and fluids are delivered intravenously through a “port” on Kristine’s hip and everything needs to be sterilized and carefully handled. Just call me “Nurse Ryan.”

She’ll receive similar drugs and treatment for the first cycle of her chemo which will last for a total of 4 days. She’ll then have 2 weeks “off” before her second cycle begins – repeating the whole process over again.

The first week of the cycle consists of daily chemotherapy. She’ll be relatively weak but still functioning. The second week she will find herself in her weakest state. Her blood cell count, and in turn her immune system, will be at its lowest point putting her at a higher risk of infection. The third week will be her best. There are no treatments during this period just time to reenergize for the next cycle of chemo.

Kristine is scheduled for three cycles of treatment lasting a total of 9 weeks. She'll then be evaluated to see how well the chemo worked. Either surgery or more chemo could follow.

We got some good news. The new CT scan taken on Thursday of last week showed that the tumors had not progressed much from the previous scan over a month ago. This was an encouraging sign that the cancer is not as aggressive as we feared.

Thanks for all the feedback on the site. I will incorporate some of your suggestions.

3/18 - Leiomyosarcoma

Well here we go the first of many posts to update friends and family on Kristine’s progress. Kristine will begin her first cycle of chemotherapy on Monday to treat a rare type of cancer known as sarcoma, specifically leiomyosarcoma (lI-O-"mI-O-sär-'kO-m ). Leiomyosarcoma is a malignant tumor formed in smooth muscle tissue. Smooth muscle is the major structural component of most hollow internal organs and the walls of blood vessels. It can occur almost anywhere in the body but is most frequent in the uterus and gastrointestinal tract.

The original mass that formed in Kristine is especially rare as it originated in a blood vessel behind the clavicle (i.e., collarbone). The cancer has metastasized (i.e., spread) forming two smaller tumors in Kristine’s lung. Cancers that have spread to other organs are classified as stage IV – a classification meaning that the disease is advanced.

An additional complication, one that lead to our initial visit to the emergency room, is that the mass is compressing a major vein that transports blood from the head, neck and shoulders to the heart. The compression of the vein has caused a clot which in turn has caused substantial swelling in Kristine’s head, neck and upper body. She is taking blood thinners to reduce any further clotting.

So how did we uncover this in the first place?
Kristine and I (Ryan) had taken a week long ski vacation to Aspen, Colorado in February. We met up with Kristine’s cousin Cris and her husband Biff. On the second day of our visit, we found ourselves at Aspen Valley Hospital after Kristine woke up with substantial swelling in her face and upper body. Several CT scans and blood tests later, the attending Physicians discussed their findings. The CT scans showed lymph nodes that were 5-10 times the normal size. They had also uncovered a clot in one of Kristine’s veins. The doctors thought the symptoms were a primary concern for Lymphoma (cancer of the lymph nodes) but needed a biopsy to tell for certain.

We thought it best to wait until we got back to Philadelphia to get the biopsy and seek counsel from our primary physician. Kristine was admitted to the Aspen Hospital and I bunked up in the bed next to her. We broke the visitor rules a bit by bringing in a couple of beers and playing cards with Cris and Biff in the hospital room.

Returning to Philadelphia, the appointments had already been set up. But Kristine’s biopsy uncovered a surprise. When the surgeon attempted to extract the large lymph node that appeared in the CT scan there was nothing to take. The lymph node was not large enough to get a biopsy. It seems the blood vessels around the lymph node were so enlarged from the clot that the upper lymph nodes just appeared larger in the scan. This little set back cost us about a week.

The next day after Kristine’s surgery, her right arm became very swollen. Fortunately, Kristine’s sister Colette was in town and took her into the emergency room. I rushed home from work. The physicians in the ER were updated on Kristine’s condition but had little to offer. They suggested that she be admitted to the hospital in order to expedite her diagnoses (after all it had been almost 3 weeks since the original symptoms appeared). An MRI was a needed next step to identify if a tumor in fact existed. It was the weekend, however, and the MRI was booked solid. The hospital stay was looking fruitless until the attending oncologist came to Kristine’s room to discuss her case. Dr. Staddon (there is a link to his profile in the right margin) really got things moving and became an important champion. Within a week Kristine was scheduled for an MRI, MRA and biopsy, which leads us to the present and Kristine’s impending chemotherapy.

We are all hoping for the best and will keep you updated.
Ryan