Vicki Returned Home Today

The doctors at Georgetown released Vicki this afternoon. Unfortunately, they also sent her home with another difficult diagnosis. The doctors now believe that Vicki's liver is not functioning properly. In fact we have know for some time that her liver had come under severe strain due to the combination of cancer and treatments over the past few years.

The evidence of this strain began to manifest itself when earlier this year she had a build up of fluid in her abdomen. This latest problem is simply a further decline in the function of the liver resulting in a harmful build-up of unsavory chemicals in her body. The chemicals (e.g. ammonia) can be toxic and cause a number of symptoms such as a lack of oxygen in the blood supply, leading to the confused state of awareness. The doctors sent her home with some medications to try to alleviate these symptoms.

Tonight she came home and went straight to bed - like she usually does after another exhausting hospital stay. Just a short while ago she took a shower and cleaned up for a good night's rest. I helped her brush and dry her hair, just like I used to do with our girls when they were little.

I continue to struggle to put into words how devastating this experience has been for all of us. I cannot find the words to describe the depth of hopelessness and helplessness. At one time, before cancer, Vicki radiated with life, energy, and kindness. This disease has reduced her to fearing being alone in her room because she may not be able to get up again, may not know who or where she is, or may not live through the night.

This week I am taking off work since it is the last week of the summer before the kids go back to school. All summer I had planned to make home movies featuring Vicki to capture some lasting memories. Now I wonder if I put it off too long, by a week or so. I don't know. I'll wait until next week to see if she improves a little.

Back to the ER

Vicki had to skip her radiation treatment today, and instead went directly to the ER at Georgetown University Hospital. She had been having significant difficulty communicating and seemed rather incoherant. After a number of tests the doctors believe she may have made a mistake on her pain medications which caused her to be so disoriented. I just spoke with her on the phone and she sounded much better than this morning. She may be able to come home tomorrow. Several doctors will see her in the morning and evaluate her condition. She will also see Dr. Putnam, a pain management specialist she has seen before. We hope that Dr. Putnam can continue to help Vicki strike the right balance to have relief from the pain, but also not be overcome by the medications.

Vicki Completes First Radiation Treatment

Vicki completed her first radiation treatment today at Georgetown. The treatment began on time at about 10 am, progressed quickly, and Vicki and her Dad arrived home by 12 noon. She will have a total of 14 radiation treatments during this first round. Each treatment will be at 10 am. She will have the weekends off. After Labor Day the doctors will image the tumor in the L-5 vertabrae with CT scans to see if the tumor has reduced in size.

We took this picture on one of our many trips to New York over the past few years. Vicki had been meeting with some doctors at Memorial Sloan-Kettering in hopes that they may have a potential cure. During our visits we tried to add some fun events to distract us for a while from our true purpose. In this picture, taken in July 2004, we were in Times Square to see Beauty and the Beast on Broadway.

Radiation Beginning Wednesday

Vicki completed all of her MRI exams this morning with no problems. Then, after a four-hour delay the radiologists began the preparation for radiation treatments. They placed markers, or aimpoints, on her to designate the points they will target for radiation. We arrived home late in the afternoon and Vicki was exhausted. We will begin the actual treatments at 10 AM on Wednesday.

Radiation Planning Scheduled for Monday

Vicki will complete her MRI testing at Georgetown beginning at 7:30 am on Monday morning. The doctors will have to sedate her because she has been in too much pain to lay down for the length of time required for the MRI exam. At 10:30 am Vicki's Radiologist, Dr. Brian Collins, will aim the radiation therapy instruments. This should take about two hours if all goes as planned.

We still do not have a radiation schedule, but we hope Dr. Collins will have the plan ready for us tomorrow. Once we begin radiation treatments Vicki will need to go to Georgetown every day for about two weeks. Each treatment will only last about 20 minutes but the ride to and from Georgetown and the potential waiting at the hospital could add up to be several hours each day.

I believe this will prove to be an exhausting few weeks for Vicki because of the daily trips and the radiation itself. Vicki has typically complained that one of her greatest challenges is a lack of energy.

Cancer Spreading Again

Today we met with Dr. Marshall at Georgetown to review the results of Vicki's latest CT scan. Unfortunately, we received very bad news. In just the past couple of months the cancer has spread again - this time to the L-5 vertebrae in her spine. The tumors in her lymph nodes in her abdomen have also grown larger, and the tumors on her lungs have grown as well.

With this new measurable tumor growth, Dr. Marshall counseled us that we need to act quickly to try to stop the tumor in the vertebrae. If the tumor on the L-5 vertebrae continues to grow it could weaken the bone enough that it may collapse and potentially cause nerve damage or even paralysis.

Tonight the doctors at Georgetown are conducting an MRI on Vicki's spine. Tomorrow morning we will meet with Dr. Brian Collins, a radiologist at Georgetown. We expect him to prescribe radiation therapy to attack the tumor in the spine. We will know more after tomorrow's meeting.

Curiously, the tumor in the liver has not changed in two years. The earlier treatments through the first half of 2004 seemed to have stopped that tumor very well. The areas of new growth are actually the same cholangiocarcinoma cells that have spread to other, more distant areas of Vicki's body, and seeded themselves in various organs and tissues.

Visit to Georgetown

Today Vicki held her regular appointment with Dr. Marshall at Georgetown University Hospital's Lombardi Cancer Center. In the discussions Vicki asserted that the pain she has been experiencing has significantly degraded her quality of life, and I agree based on my observations over the past few months. This past week she has spent nearly all of her time in bed and all of her time in pain.

Dr. Marshall gave Vicki the option of cancelling her chemotherapy treatment, which Vicki agreed to. This will provide Vicki a little longer break and hopefully help her regain strength for our annual trip with her family to Myrtle Beach in early July. Her next appointment and chemotherapy treatment will be July 11th.

Dr. Marshall also called in a specialists in palliative care and pain management, Dr. Andrew Putnam. Dr. Putnam spent a significant amount of time interviewing Vicki to learn more on the details of the pain she has been experiencing. He made some recommendations for slight modifications in the dosage of some of the pain medications and asked her to follow up with him on Thursday. We liked Dr. Putnam because he spent a great deal of time listening to Vicki's concerns and seemed to think he may be able to help her.

Vicki will also have an appointment with her new gastroenterologist on Thursday, Dr. Axelrad. We are hoping he has some idea of how to control and alleviate the symptoms of Vicki's Ulcerative Colitis. So far he has not shown us that he has anything better to offer than Vicki's previous gastroenterologist, but at least his office is closer.

I have spent this week trying to resolve several mistakes by our mail order pharmacy, MEDCO. In addition to these problems, an employee at UPS has either stolen or lost one of the narcotic pain relief presriptions MEDCO had sent Vicki. I am filing a prescription drug fraud report with the County Sherrif's office this week on the matter. In the meantime, Vicki has run out of an important pain medication so we obtained an emergency prescrition from Georgetown today. Believe it or not, every week I have something like this, a fouled up bill, prescription, appointment, or similar event. This is par for the course in medical administration.

In fact, the whole series of events has raised my stress level past the breaking point. Taking care of a terminally ill spouse, two kids, a dog, a house, working a full time job, and dealing with all of the associated problems that go along with these has proven to be too much. I am forgetting more than I remember. I suppose many things will just have go undone and in the end it may not matter much. I look at tomorrow and I really don't even see how I'll get through it.

Vicki's Home from the Hospital

Yesterday the doctors at Reston Hospital released Vicki. They never did determine what caused the pain in her abdomen. So I suspect we are likely to experience this cycle of events again.

Vicki seemed to do well last night. She stayed up through the evening and interacted with the family, organized her stuff, etc. Overnight she said she experienced more of the same abdominal pain, usually after she eats anything.

We'll just take life one day at a time and hope we can keep her home and comfortable as long as possible.

Vicki Hospitalized

Vicki went to the Reston Hospital Emergency Room on Wednesday because of cramps and pain in her abdomen. The doctors admitted her to the hospital and she has been in room 566 since late last night.

Vicki called me a few hours ago to let me know that she had met with her doctors and they were not sure why she was having so much discomfort. They initiated a number of tests, including a CT scan to try to determine the cause.

No word yet on when she might be released.

Update on Vicki

Vicki had a mixed Memorial Day weekend. On Saturday she became very sick and spent the entire day in bed. Sunday she was a little better but still mostly bed-ridden. Fortunately, by Monday she began to recover a bit and rallied for the end of the day and a nice dinner with our friend Sheila and her family. Olin arrived back from SC and Alabama just in time for grilled steaks and salmon.

Yesterday we met with Dr. Marshall at the Lombardi Cancer Center. He said he thought Vicki was doing reasonably well considering all she has been through. Still no new growth of the cancer, liver is functioning sufficiently, and blood counts were close to normal.

So Dr. Marshall recommended that Vicki continue chemotherapy treatments, but he modified the treatments to make them easier on Vicki. She has switched to an oral chemotherapy agent called Xeloda and is still receiving the Avastin via IV. Vicki and her dad went to Georgetown today for the Avastin treatment. We will meet with Dr. Marshall again on June 20th, and have another chemotherapy treatment that afternoon.

Online Memorials

Online Memorials Bring Strangers, Friends Together in Community of Grief

By Yuki Noguchi
Washington Post Staff Writer
Monday, May 29, 2006; Page A01

Days after his wife's death from inflammatory breast cancer in 2004, Michael Bloomer set up a Web page memorial. An old co-worker from Florida signed Kim Bloomer's online guest book. So did a high school classmate in Michigan.

For Bloomer, a retired government worker who lives in Dumfries, the memorial page became a soothing place where he could read stories, receive condolences and even reach out to his wife by posting his own messages: "Hi Honey. . . . It's only been about a month since you left, but it seems like ages since we laughed and loved when the days were normal and you were without pain. I miss you so much it hurts inside."

Bloomer says he frequented the online memorial in the first year to read new postings or to reread old ones. "It was kind of like a lasting tribute so that anybody could go on there at any time."

As the country observes the memory of those who died in its wars, online memorials have altered acts of bereavement and become palliative retreats for some who grieve. Web sites dedicated to the deceased now number in the millions in the United States, and for those left behind, posting stories, photos and videos is a way of keeping a permanent record of the person's life. Material added to mark important days such as birthdays, Mother's Day and Memorial Day, or even notes left by well-wishing strangers help the page evolve, so the memorial itself can take on a kind of second life.

Viewers use the Web sites to find and comfort one another -- not only to facilitate communication from far-flung or long-lost friends who couldn't attend a funeral, but also to send messages from one dead soldier's wife to another, from one mourning mother to another or among those galvanized to fight a disease.

Some sites such as Legacy.com, Memory-of.com and Mem.com have been around for about a decade and provide software tools for users to customize their Web pages. Legacy.com and Memory-of.com charge one-time fees of $50 to $100 for a permanent place on their sites. There are other, smaller sites started by funeral homes; still others are set up by individuals who purchase domain names in honor of the deceased.

Read the rest of the article at The Washington Post On-line.

Update on Vicki

Overall, Vicki had a reasonably good weekend. She spent most of her time preparing for the Girls in Action (GA) end-of-year ceremony at out church. By the end of the ceremony on Sunday evening she was completely exhausted so she came home and went right to bed.

Vicki has an appointment with her Gastroenterologist, Dr. Axelrad, on Thursday to check on the progress of her Ulcerative Colitis. She seems to be getting by, but certainly not getting any better.

We are looking forward to a long uneventful Memorial Day weekend, and then next Tuesday, 30 May, we will go back to Georgetown for another appointment with Dr. Marshall and most likely another chemotherapy treatment.

The Deerslayer

This morning, at about 6:10 am, a deer lunged from the center median strip of a major six-lane highway (Route 28 in western Fairfax County) and slammed into the front of my car. I swerved in an attempt to avoid the deer, nearly hitting another car. Obviously, I did not turn far enough though. At least I avoided a head on collision. The car hit the deer on the front left bumper, and the deer must have spun around upon impact - see the dents on the door. Not the best start to the day, but much better for me than the deer. I'll take the car into the shop for repairs on Wednesday.

Remembering Mom

Today I am remembering mom like just about everyone else.

I was the youngest in my family so by the time I was in 10th grade everyone else had moved away except mom, dad, and I. As a teenager I suppose I appreciated mom, but I am fairly certain I rarely let on. After all, parents are so embarrassing to a teenager. Now in my early 40s I look back on that time as a gift I failed to recognize. Mom worked as a school teacher and on nights when dad was working late I would sometimes make dinner for the two of us and have it ready for her when she came home. It was our time together and I could make any of the foods that I like, and dad would not eat - but mom would. My favorite was the Ortega Taco Kit from the grocery store.

Just over a year has passed since mom died (March 19th, 2005). It seems like just yesterday and I have not been the same since. I moved away from home 20 years ago, but never lost contact. We talked nearly every week, usually not having much new to say but talking anyway.

I never really realized the depth of her impact on me until she was gone. I find this feeling very difficult to put into words. I can only explain it as a very deeply held sense of strength and confidence I held knowing that mom and dad (see photos above) were just a phone call away. And, no matter what situation I happened to be dealing with on the particular day they would hear me and provide wise counsel.

Now neither are here and I can only seek their advice in my heart. I can still here mom's words in my head as if I were 10 or 15 years old again. I know what she would tell me to do, and she would reassure me that everthing would be alright. If only I could call her one more time - I never imagined how hard life would become. I still have the phone number in my cell phone, and, of course, it will be in my heart forever.

I have failed to distance myself from the grief of losing mom, dad, my brother Jeff, and Vicki's diagnosis of cancer. Some of you may find this to be the case for the loss you feel for a loved one. I have been reading a daily e-mail from GriefShare. They do not offer any miracle solutions, but they do offer useful insights to help make the grieving process a little more bearable.

Vicki Attends Auction

Yesterday, May 13th, 2006, proved to be a normal weekend day for us here in Herndon - soccer games and birthday party for friends. In the evening we participated in the 10th Annual Southview Baptist Church Auction to support the youth group at the church. Vicki managed a late-day rally and attended the auction for most of the time. She didn't buy anything last night. I walked away with a few gift certificates to local restaurants and some coffee.

Cancer Affects Everyone

The America Cancer Society estimates that in 2006 as many as 564,830 Americans will die from cancer, second only to heart disease. In fact, nearly as many Americans will die from cancer in 2006 alone as those who died in all of America's wars combined. A total of 651,008 Americans died in battle from the American Revolution through the 1990-1991 Persian Gulf War, according to the US Department of Defense and the Veterans Administration.

One in four Americans will be stricken with cancer at some point in life. And, cancer will touch the rest of us as well. Each American alive today has a nearly 100% chance of a close relative such as a mother, father, sister, brother, or grandparent, receiving a cancer diagnosis.

Many of us will experience cancer diagnoses with multiple realtives. My father received the diagnosis in 2001 when his doctor told him he had non-hodgkins lymphoma. He survived rather well under the strain of chemotherapy treatments. But, by early 2005, the cancer had begun to take its' toll on him. The years of living with cancer, his age (76), and my Mom's death on March 19th, 2005 proved to be too much burden. Dad died on July 12th, 2005. At the end I found myself celebrating for him that his suffering had ended. My other close experience with cancer was in December 2003 with Vicki's cancer diagnosis.

Cancer not only affects those with the disease, but everyone else who loves the person with the disease. It changes relationships, it changes plans, it changes hopes and dreams.

Update on Vicki

On Tuesday, May 9th, Vicki met with Dr. Marshall at Georgetown University’s Lombardi Cancer Center. I’ll fill you in on the results of the visit. But first, I wanted to provide a little background.

Vicki has endured a very difficult spring. We have hospitalized her three times (for about a week each) since March because she has been developing more complications, in some cases related to cancer. In early March Vicki suffered from a blood clot in her left shoulder. This caused significant swelling in her arm and presented a potentially life threatening risk if the blood clot were to break up and block a blood vessel in her lungs. So we admitted her to the hospital and the doctors were able to treat her effectively. This is not uncommon for cancer patients to have problems with blood clots.

In late March Vicki experienced another of her periodic flare-ups of ulcerative colitis. This episode turned out to be particularly stubborn and we admitted her to the hospital again to enable her doctors to bring the ulcerative colitis under control. Then, in April, Vicki developed pneumonia and we admitted her to the hospital a third time for treatment.

Since March Vicki’s abdomen had begun to grow larger. She also began to develop significant pain in her side. After examination by Dr. Marshall last week, he determined that she had a fluid build-up in her abdomen and that they would need to drain it. So last week Georgetown Radiology conducted a paracentesis to drain the fluid from her abdomen. Vicki also had a CT scan at Georgetown last week. She tolerated the treatment well and seemed to be feeling much better over the weekend.

Today, Dr. Marshall provided us with the results of the tests on the fluid and the CT scan. He noted that the fluid contained no cancerous cells – very good news. He also explained that neither the tumor in the liver, the enlarged lymph nodes near the liver, nor the small cancerous lesions on her right lung had grown any measurable amount since February – once again very good news.

So the question remains: what’s causing the fluid build-up in the abdomen and how serious is this? He believes the fluid build-up indicates the liver is functioning less efficiently due to the combination of the cancer – which is apparently blocking a least two major veins (portal and middle hepatic) – and the various treatments she has received over the past couple of years.

We have scheduled another paracentesis at Georgetown for Thursday and we will meet with Dr. Marshall again in a few weeks. Hopefully Vicki will feel well enough following the paracentesis to enjoy the rest of the spring weather here in Washington.

Welcome to my new blog

Some of you may not be familiar with the term Blog. Blog is a short-hand term for web log. The concept of Blogs has been around on the internet since the early 1990s. Pyra labs' release of its Blogger software in August 1999 triggered an explosion in the use of weblogs. Since 1999, the concept and use of blogs has morphed from a page containing links to new web pages to online threaded discussions, much like an online diary or discussion board. The weblog ushered in the opportunity for the average internet user to begin syndicating opinions and content and posting that content on the public internet.

You now have three easy methods available to obtain up-to-date information regarding our family. You can choose to visit my blog web site regularly by simply adding the URL link to your favorites menu on your browser and visiting regularly. A second option is to use the handy e-mail subsciption window at the bottom right hand corner of my blog. Simply type in your preferred e-mail address and click on the subscribe button. When I post some new information into the blog you will recieve an automatic e-mail notification. Finally, if you would like to use a feedreader to subscribe with RSS feeds, you may click on one of the links - also at the lower right hand corner of the page. If you do not have a feedreader please view the list of links further up the page and download a feedreader from the link I provided.

You will notice the I have already posted a few items, primarily as tests. I will attempt to update this site at least once a week, if possible. Please offer comments and suggestions on the blog site as you feel appropriate. Of course, you can always e-mail us just as before.

This is Vicki

This is my wife, Vicki. We snapped this photo of her in front of our house on Easter Sunday, 2004.

Three months earlier, on December 23rd, 2003 our lives changed forever. That day Dr. Ron DeMatteo at Memorial Sloan-Kettering Cancer Center in Manhattan explained to us that he had determined that Vicki has cholangiocarcinoma (bile duct cancer).

Initially, we sought to fight this tumor and seek a cure. I remember the train ride home that evening from New York's Penn Station to Washington, DC we were in a state of shock. But, the next day, Christmas eve, we began to devlop a stategy. Through friends we learned of Dr. John Marshall at Georgetown University Hospital's Lombardi Cancer Center in Washington, DC. The next week we attended our first appointment at Lombardi and soon we began treatment, hopeful that we could beat this cancer.

Two and a half years have passed and Vicki has survived a very difficult journey. The many successive battles have led to a very long war, testing our will, our courage, our stamina, and our faith. The challenges most often involve enduring the physical pain and drain of chemoembolizations, endless chemotherapy treatments and computed tomography (CT) scans, and associated side effects. The battle not seen perhaps presents the greater challenge. Grief and anxiety sometimes seem so overwhelming.

In this blog I will relate the many experiences of our battle with cancer over the past few years. I will also provide some periodic updates on how Vicki is doing. At other times I may comment on something completely different because life is much more than cancer.

Paul - September 2005

This is a photo of me last Fall at Stribling Apple Orchard in Markham, VA - about an hour drive west of Herndon. Late September is the best time of year for apple picking in northern Virginia.