Home away from home--finally!

Deborah had the nuclear med scan on Tuesday and Wednesday and then was released from the hospital to what will be her new home for awhile--the Marriott hotel. Paul and Jared helped her move from the hospital and get settled into her room Wednesday afternoon.

During the holidays the hotel has been putting out this nice assortment of cookies along with some eggnog and hot chocolate. Hopefully Deb will be able to enjoy some of these.

The pretty Christmas tree decorating the lobby.

 Deborah had a final CT scan today to make sure there are no problems from the surgery. Not a pleasant experience to say the least considering her sensitivity to the barium drink. Ugh. However, after the surgery they received a call from Dr. Kaseb, the oncologist. He said he had some good news that couldn't wait and then said the nuclear scan showed absolutely no sign of cancer anywhere in her body. He said he consulted with the neuroendocrine specialist and they both feel like no further treatment is required, just the expected follow up scans. This is extremely good news!

Paul and Jared will be leaving Houston this weekend to get back to work and school. I will be returning to stay through the week with Deb. We hope this week will be a time of recovery and gaining strength followed by a nice, safe trip back to Arizona! 

Post op Days 8, 9, 10, 11

Dave and I left Houston on Christmas Eve to come to Utah. Merry Christmas Deborah, Paul, and Jared! Marie, Annie and Will, along with the rest of the family missed you terribly, but were so happy that the three of you could be together and sorry that it had to be in the hospital. We look forward to a regular, old, healthy Christmas next year, celebrated with the whole family together!!

Reports from Houston (from Paul and Jared) tell us that Deborah is making slow, steady progress. The fluid retention is slowly dissipating, the blood pressure and heart rate are much improved. Deb is more mobile and is eating regular food in small amounts. Just a few more minor adjustments and she will be ready to discharge to the hotel.

 A bit of good news from the pathology report I forgot to mention is that they did not find any 'vascular invasion' by the tumors. That is great news!

The nuclear scan is still scheduled for tomorrow, the 28th--post op day 12--and will continue on the 29th. So please keep Deborah in your prayers. And some prayers for the docs would be appreciated too! We want to find that sneaky little tumor and get rid of it!!

Post op Day 7 --a terrible start and a good ending

Early in the morning on December 23rd, Dr. Roses came into Deb's room and told her she was progressing well and that the final pathology report was back. We had been anxiously awaiting the final pathology because we knew they were looking to see if the tumors had any 'vascular invasion' which may mean further treatment might be needed. However, at this time in the morning when Deborah was alone, he said "interestingly........the pathology report shows that the cancer cells are not primary liver cancer cells. The cancer originated somewhere else and metastasized to your liver".  And then he said "but that is nothing you need to worry about right now". Talk about a terrible start to the day!

When we arrived a little later, I looked at the pathology report that Dr. Roses had left for us and read that the type of cancer cells they found in her tumors were called 'neuroendocrine' cancer cells and that they can mimic primary liver cancer cells, or hepatocellular cancer. So, in the biopsy that was initially done in Phoenix, the pathologist had incorrectly identified the cells from needle samples that were taken from the tumor. In this final pathology they were able to dissect all the tumors very precisely and look at a much larger sample, enabling them to make this new determination.

Understandably, Deborah and all the family were very concerned and wanted more information from the doctors. Dr. Roses had told Deborah to have us page him when we came in, so we did and he was able to shed more light on the situation. He said neuroendocrine cancer is quite rare and that they were very surprised at this finding. He said it is a slow growing cancer and the main problem with it is that it spreads to the liver. This means that she has had the main treatment for it already by having the liver resection. This much is behind her. He said the primary tumor is usually as small as a pea and that in some cases the primary tumor is never found. It can be located in a variety of places including the stomach, the pancreas, the small bowel, the lungs, the appendix, and other less common areas as well.

Dr. Roses said this is not terrible news, just unexpected and will require a slight change in direction. They are planning a special nuclear med scan using radioactive dye that is easily picked up by neuroendocrine cancer cells. This is scheduled on December 28th and will involve a series of pictures taken over a two day period. The hope is that the primary tumor location can be identified. If they find it, then it will likely require surgical removal at some point. Deb has a good attitude about it right now. She wants to get better from this surgery so she can be strong enough to handle whatever will be required in the future.

I told you there was a good ending to the day and that was that Jared arrived!! Yay! 

He was a breath of fresh air and a lifter of spirits.

 Jared and Paul will be with Deborah for Christmas.

Post op Day 6

 Some of the pretty flowers decorating her room.

Deborah is still plugging along, taking walks whenever she can. The pain is in pretty good control and the nausea is at bay today. She is having some problems with fluid retention. They weighed her today and she was up 20 lbs of fluid since the day of admission! This was a little discouraging to hear since she has been eating nothing and at least thought she might lose a couple pounds. We have assured her that by the time this fluid is gone, she will be down a few! 

Post op Days 3,4, and 5

Deborah finally moved out of the PACU transitional unit on Sunday. The hospital has been full but finally a room opened up for her on the surgical unit. She is on the 7th floor now.

The last 3 days have been kind of like one long day for Deborah consisting of lots of time in bed trying to rest, some time walking the hall around the nurses station, some time sitting in the chair beside the bed, an occasional TV show just for the benefit of her visitors, twice daily visits from the doctors, frequent visits from the nurses, daily (at least) blood draws, and hourly attempts to beat her own record on the incentive spirometer.

These days have not been easy for Deb due to a persistent and progressive nausea that makes it difficult for her to take in the amount of food and fluid that would make her feel stronger. They think the culprit may be the pain medication she has been receiving at a low consistent dose, and that she has been able to administer extra doses of to herself (using the magic button) for breakthrough pain. So about an hour ago, they replaced the narcotic pain medication with a 'numbing' medication similar to Novacaine. And no more magic button. We are hopeful that this will control the pain and reduce the nausea.

So please continue to keep Deb in your prayers and thanks to those of you who have sent such pretty flowers. They are beautiful and really add some cheer to her room.

Post op Days 1 and 2

Deborah is progressing well since her surgery. She remains in the PACU transitional unit because there has not been another room open up. Apparently the hospital has been extra busy just now before the holidays. They did 75 surgeries the day after Deb's! Anyway, she likes this room and the nurses have been superb. They like Deborah because she is kind and she is a good patient. She does everything she is supposed to with a cheerful attitude.

This is Joan.

This is Mercy.

Dave wanted to include his 'artistic' shot of the critical fluids and medications, with the assorted pumps.

Paul is faithfully at Deb's side from early morning til late at night with a couple breaks for food.

This is Rajamma.

Deborah is progressing as expected and maybe even a little ahead of schedule. She has noticed the pain increasing a little bit as she moves more, and she has had some bouts of nausea, but there is medication that controls that pretty well. Post op day 1 was pretty much just a stay in bed and try to sleep day, but day 2 saw Deborah out of bed and actually walking a lap around the nursing station. She said it felt so good to be out of bed and moving her legs. She is able to take clear liquids now. The pain is pretty well controlled. So she is doing great and taking everything in stride. She is grateful for the wonderful care she is receiving and for all of your prayers and kind thoughts.  

Day of surgery Part 2

A little more detail about the day....Deborah and Paul arrived at the hospital at 5:10 this morning to prepare for the surgery. They said they had to wait in line like they were at Disneyland, only not so fun. The staff got her into a curtained off room where they got her in a gown, completed all those pre op things and started an IV. Then the anesthesiologist came in and said he was going to give her a "Margarita without the salt". (Just a little something to help her relax.) She was worried for a minute that it wasn't working, but then she said the colors on the curtain around her bed began to blend and that was the last thing she remembered until she woke up after surgery.

Patiently waiting........they are so organized here considering how many people they process each day. There was a nurse who would call us into a small conference room every two hours during the surgery to tell us how it was progressing. This was being done for all the families there as well. Like I mentioned before, Dr. Vauthey came out after the surgery to tell us it went well. He said Deborah would be in recovery and would not be able to have visitors for a couple hours.

While we were waiting, this lovely group of carolers came through the waiting room singing some Christmas carols. It was a nice reminder of the Christmas Season. After about 3 hours they notified us that we could go back to see Deborah. She was in the PACU (post anesthesia care unit). This was a very large PACU with probably 40 or more patients recovering from their anesthesia before moving out to a room. Literally wall to wall bodies on rolling beds, but well organized bodies.

She looked so good! She was awake and talking, although sleepy from the residual drugs in her system. She was coherent and wanted to know what the surgeon had said and happy to know he said the remaining liver was completely cancer free. She said she had no pain and felt like she could get up and walk if she wasn't so sleepy. :) We were allowed to visit for 20-30 minutes and then she needed to rest.

Some of the medical buildings between our hotel and the hospital. After another hour or two Deb was moved from PACU to the PACU Transitional unit. The patients on this unit are closely monitored. She will only be here for one night and then will move to a regular surgical floor.

She asked me to take this picture! Earlier she had started to shiver, but didn't feel cold. The nurses brought her a bunch of warm blankets and wrapped her up, including her head. This did control the shivering, but she thought it was funny. She says she has minimal pain and feels good,

She has a charming and kind nurse named Rajamma who watches out for Deborah--keeps her IV's running smoothly and makes sure she is comfortable. Paul mentioned earlier how many skilled people had to be involved in everything that happened today from the surgeons, to the anesthesiologists, to the researchers, to the nurses, to the technicians and many more behind the scenes. Its a lot to think about and makes us feel so grateful for all these people and their dedication.

Day of surgery

Just a quick note to let you know Deborah made it through surgery with no complications. Dr. Vauthey just came out to tell us everything went perfectly. He was able to resect the liver just as planned. There were no surprises. The remaining left lobe is clean. No blood transfusions were required. She is in the recovery room now and cannot have visitors for a couple hours.

The Day Before Surgery

Today was known as "pre-op" day. Deborah had lots of appointments--beginning with more blood work, an EKG, appointments with the surgeon Jean-Nicole Vauthey, his assisting surgeon Dr. Robert Roses, and the anesthesiologists. A long, but informative process. Maybe a little too informative for Deborah as they explained what would happen tomorrow step by step with plenty of (gory) details.

From everything we have read and what we have been told by the support staff here, we understand that Dr. Vauthey is really a pioneer and worldwide specialist in the surgical treatment of liver cancer, and very skilled at what he does. So grateful for that!  Dr. Vauthey again expressed his belief that Deborah's cancer is a non aggressive type, that she has a very LOW possibility of recurrence, and a HIGH probability of sailing through the surgery and recovery without complications. He said her surgery is called an "extended hepatectomy". They will be leaving 30% of Deborah's liver volume which is plenty for regeneration.

This is Dr. Roses, who is a general surgeon doing his fellowship with Dr. Vauthey, to learn the trade (of liver surgery) so to speak. He will be in the operating room assisting with the surgery. He also told us he will be checking on her several times a day after surgery, along with Dr. Vauthey. Dr. Roses also stressed that he is available basically 24 hours/day if anything comes up. We are to have the nurses call him if we are worried about anything. He also seemed very capable and was able to answer all our questions very clearly and compassionately. We feel Deborah is in the best possible hands.

Paul and David arrived last night and were able to attend the appointments today and ask some questions. Deborah and I are so happy to have them here and feel their support and love. They were able to give her a Priesthood blessing tonight which greatly comforted her.

Please add your prayers for her tonight and in the days to come.

The Weekend

So we decided to do some "recon" and check out the areas that Deborah will be using here at MD Anderson. We learned that MD Anderson is part of a bigger, unique medical complex called the Texas Medical Center. They have been involved in medical research and treatment for over 60 years. We thought this area of Houston was the "downtown" because of all the tall buildings and parking structures, but as we drove and walked through the area more we realized that ALL the buildings were medical buildings of some sort. For example, there is the Ben Taub General Hospital, the Methodist Hospital, the Texas Children's Hospital, the St. Luke's Episcopal Hospital, the Texas Heart Institute, the Baylor College of Medicine, the University of Houston College of Pharmacy, the University of Texas Medical School and Dental School, the University of Texas School of Nursing, and multiple clinics, medical office buildings, etc. And in addition there is the MD Anderson Cancer Center complex which includes the Main Building, where all the outpatient procedures and tests and treatments are done, the hospital itself where the inpatient care is given, the Radiation Therapy Center, and the Rotary House which is a hotel to accomodate the MD Anderson patients and their families. We limited our pictures to some of the MD Anderson sites.

The 'Main Building"

The entrance to the hospital

A view of two of the three towers of the hospital

The skywalk that goes from the Main building to the Rotary House

We felt a little like tourists, especially when a nice man asked if he could take the photo so we could both be in it!  The Rotary House is a nice hotel that is owned by the MD Anderson folks and managed by the Marriott corp. This is where Deborah will be staying for the seven days after her surgery to recover enough to travel. They had some performing groups scheduled to perform throughout the day today and there were lots of people in the lobby enjoying the entertainment.

We attended church at the Hermann Park Ward this morning and we hit the jackpot (can you use that term regarding a church service??) of all Christmas programs! We enjoyed their Christmas Sacrament Meeting which was a musical program including a choir, a quartet, a bell choir, a French Horn, a flute, a violin and a cello. Wow! It was fabulous. The Bishop spoke to us afterward and mentioned that they had some incredible musical talent in their ward. That was an understatement. A very uplifting day and we were grateful to feel the Christmas Spirit in such a powerful way.

Just want to send out a thank you to all of you who have called or sent messages and to all of you who are praying for Deborah. She feels your prayers and your love.

MD Anderson--Day 3--Miracle #2

Friday, December 10, 2010---Today we again anxiously arrived for the appointment with the surgeon, Dr. Jean-Nicolas Vauthey (pronounced Votay). We were commenting before he came into the exam room that he might possibly be French based on the spelling of his name. He swept into the room with 2 other men. In an obvious French accent he introduced one as an observing physician from Brazil. We didn't catch his name. He introduced the other one as his Physician's Assistant or "left hand man", Steven Wei.  As he looked at us over his glasses with a twinkle in his eye he said "I save my right arm for surgeries'.  A cute, probably oft repeated joke that immediately put us at ease.   (We forgot to take pictures, so these are copied from a web site.)

                                                        

Then he got right down to business and said his opinion was that Deborah would just need a resection (removal of a portion) of the liver and would not need any chemo treatments prior to that. Again, the feeling of relief was palpable and we realized she had been blessed again. He said he would remove the right lobe and a small portion of the left lobe for safety to maintain a cancer free border around the tumors.  He said his schedule was pretty full, but that he might have a cancellation next Thursday, December 16th. If that doesn't work out, he will do the surgery the following Monday, December 20th. Deborah has naturally been anxious to get this taken care of the quickest way possible, so this was amazing news. He asked if we had any questions for him and if not, Steven would explain the details and out he went.

Steven then took over, gave Deborah some literature regarding liver cancer and liver surgery, and then proceeded to help us understand the upcoming process and what to expect. He explained that the liver is divided into two lobes, and each lobe has four sections in it. She will be losing all four sections in the R lobe and one section in the L lobe. We learned that a person can survive with only 20% of their liver remaining. The portion left in the body will regenerate and grow to a size that will function as though nothing is missing! Dr. Vauthey mentioned that liver resection patients can go on to run marathons if they desire.

He told us the surgery itself will take 4-5 hours, then she will be in ICU for 1-2 days, with a total hospital stay of 6-7 days. Then they require that she stay in Houston for 7 days after discharge, prior to traveling back home. The regeneration of the liver can take 6-8 weeks, during which time she will feel tired and should not put stress on herself by overdoing.

This time we celebrated by driving south to Galveston and to the beach. It was only about an hour away and we couldn't get the Glen Campbell song out of our heads. "Galveston, oh Galveston..."   We found out that Galveston isn't all it used to be cracked up to be. It seemed pretty deserted except for a street called The Strand which had some nice looking shops and a few people milling about, but a drive through was all we needed and then we headed back north to Houston.

Deborah knows she has a serious surgery ahead of her and a long recovery time, but feels so grateful for the treatment plan that has been put in place. She has mentioned how grateful she is for the many people who are gifted in the medical field and who have dedicated their lives to improving treatments and outcomes for all types of cancer. She is also so grateful for family and friends who have stepped in to help take care of her family and her obligations at home. She couldn't do this without you!

Thank you and keep her in your prayers!

MD Anderson--Day 2--Miracle #1

Thursday, December 9, 2010---Deborah spent an extremely restless night Wednesday night after learning from Dr. Kaseb that her future treatment all depended on the results of the CT scan. We knew from the biopsy that the cancer cells in the largest tumor were 'well-differentiated', meaning that there was a low probability that they had spread, but didn't know yet if the spots that had previously been seen would be found in one lobe or two, or even if they were all cancerous. We also knew that if cancerous tumors were found in both lobes, the treatment would be some form of chemotherapy and a liver transplant. So in a state of high anxiety we arrived for the 2nd appointment with Dr. Kaseb.When he came into the exam room he had another gentleman with him, who he introduced as 'the pharmacist'. His labcoat said 'Richard Lazano RPH, Director of Pharmacy'. We were a little concerned and wondered why he would be bringing in the pharmacist, but Dr Kaseb said he was there to answer any questions after we talked.  

Then Dr. Kaseb proceeded to explain that he had reviewed the CT scan from yesterday. He said that the 4 spots seen on the liver were indeed hepatocellular carcinoma, and that they were all contained in one lobe. He stated he had spoken with the surgeon and the surgeon felt that her cancer could be treated by surgically removing that one lobe. At this point Deborah began to cry and he asked what was wrong, thinking that he had said something to upset her. She explained that they were tears of happiness.

 Relief washed over us as we realized that our fervent prayers for a miracle had been answered.

Dr.Kaseb said Deborah would meet with the surgeon, Dr. Vauthey, tomorrow and he would let her know if she would need a special form of chemo treatment prior to surgery or not. Then he turned the time over to Richard Lazano to explain these treatments and off he went to see his next patient.

Richard was also a very nice man and extremely knowledgeable in his field. He had been working in this area for the past 15 years and is known as the expert in chemotherapy treatments used in liver cancer (according to Dr. Kaseb). He told us about the procedure that would most likely be recommended by Dr. Vauthey tomorrow if he felt she needed it. The procedure is the most current treatment for liver cancer and is called TACE-Trans Arterial Chemo Embolization. He explained that they use very small beads that soak up the chemo solution, which is then administered directly into the tumor in the liver through the arterial system. The artery is then blocked so the blood supply to the tumor is cut off and the tumor will hopefully die. If this procedure were to be recommended it would mean a 2-3 day hospital stay and then return for another CT scan in 4-6 weeks when the decision would be made to either repeat this process or proceed with surgery. This was all very interesting and we were amazed at the ingenuity involved in the treatment of this disease, however, Deborah so hoped that this would not be necessary. We left knowing this question would only be answered tomorrow when we were to meet with Dr. Vauthey.

We had received a miracle, we knew it and we knew there was only one person to thank for it. So we went where we feel closest to God, the temple! It was a perfect way to celebrate.

The Houston temple is beautiful inside and out.

Then of course we also celebrated with a nice dinner out at Carraba's.

 At this point Deborah said she was feeling totally drained from the emotional roller coaster,

 but was also feeling so grateful for what had happened today.

University of Texas MD Anderson Cancer Center---Day 1

 With much anticipation we arrived Wednesday, December 8, 2010 at the MD Anderson Cancer Center for Deborah's first appointment. We arrived at 7am for registration and blood work, then returned later for the appointment with the oncologist. Prior to arriving, Deborah had received an email from the center showing her schedule for the first two days and giving information such as how and where to park, where each test or appointment were located in the building, which elevator to take to get to that part of the building etc. We learned that the University of Texas MD Anderson Cancer Center has been a leader in cancer care, research, and education for over 60 years. Its quite a place to say the least!

This is the entrance to MD Anderson Cancer Center Main Clinic Building. That is Deborah standing next to and blending into the pillar next to the gray car, holding her packet of medical information.  

This is what you see when you enter the main building. Not sure why these people are standing on each side of the aquarium, but that is the name of the lobby--The Aquarium.

The check in went very smoothly and we began to see what a busy, bustling place this was as more and more people kept arriving to check in. Then we went down to the lab area for the blood work. The waiting area was filled with people (probably 80 to 100 or more) and we thought we might be waiting a long time. However, Deborah's name was called in about 5 minutes and she went back to find a blood drawing room with about 16 stations, each with a person sitting in a reclining chair getting their blood drawn. No wonder they are able to move so quickly! We felt sad as we looked around the waiting area and saw many people who were obvious cancer patients--some were bald, some were extremely thin, and others pushed poles with apparent bags of medications infusing. We knew everyone there was facing something scary and sad in their life at that moment and we felt grateful for the workers who were so competent and caring.

Deborah's first appointment was with the oncologist, Dr. Ahmed Kaseb. First we met his nurse, Peggy, who was obviously a seasoned oncology nurse with a perfect mix of compassion and humor. She is the type of person who felt like our best friend after about 5 minutes. Then we met Dr. Kaseb who is a gastrointestinal oncologist, specializing in liver cancer. He inspired confidence in us immediately with his tender way and his obvious expertise in this field. He had reviewed Deborah's medical records and explained the need for a CT scan. He said the radiologists here are so specialized in cancer that they can determine from a CT scan if a tumor in her liver is cancerous or a benign hemangioma. There would be no need for further biopsies. We were relieved about that, but scared and anxious about the results of the scan. He made some rough drawings of a liver, showing where her tumors were thought to be and then explained some of the treatment options based on where and what type of tumors were found, explaining that if there were tumors in both lobes of the liver that a transplant may be the best option. This was a very scary thought to Deborah. Her biggest fear about that was having to depend on someone she loved and possibly put them at risk to save her life. To those of us who love her, the alternative was unacceptable.

Any one of us would gladly donate part of our liver to help her, and many in the family had said "when can I be tested to see if I'm a match? I want to be tested."

This turned into a long day because Dr Kaseb moved forward the appointment for the CT scan to directly after her appointment with him, so the results could be obtained earlier. This was a long, drawn out process for Deborah, taking about 4 and a half hours in total, including waiting time. She said the time spent in the back waiting for the contrast to move through her body was a scary, but somehow uplifting time. She was there with several other patients, most of them obviously sick and suffering, and she felt tense at first and scared as she looked around at what might be her future. Then conversations started up and people talked about everyday things and they also talked about some of their experiences with their cancer care. There was a lot of talk of God and how He had helped them deal with the difficult things and how close they felt to Him. She knew she had those same beliefs and was touched that these people were so open and that they were reaching out to her and each other with these comforting words.

All in all, quite a day! We went to bed exhausted and so anxious to find out the results of the CT scan.

The Shocking News

On December 2, 2010, Deborah and her family received some shocking news. Deborah, a young, healthy wife and mother of four had been diagnosed with liver cancer. To say this news was devastating is an understatement. How could this be happening to Deborah? She is the heart of her family and so many people love her and depend on her. This is usually a disease that affects people with liver cirrhosis or hepatitis. She has always lived a very health conscious lifestyle--no bad habits or exposures that could have put stress on her liver. Unfortunately, we have learned that  it can strike anyone and that the incidence in the US is increasing at a rapid rate.

Knowing something had to be done quickly, Deborah's friends and family got busy checking out this disease and where she could get the best possible treatment. Through several medical professionals it was confirmed that MD Anderson Cancer Center in Houston Texas was the premier place for cancer treatment, especially liver cancer. Then a good family friend, who happened to be a physician, was able to call and arrange for her to be seen and treated there.

So begins a journey for Deborah and her family that was neither anticipated or desired, but that will be taken. This blog is a record of that journey.