Thursday, January 6, 2011

Goodbye Houston! Hello Phoenix, family and friends!

Deborah is heading home today, January 6, 2011. She has been in Houston since December 7th, and has been through what feels like a lifetime of experiences and emotions. Just this week brought a roller coaster of emotions. There was the high of waking up Monday morning feeling strong, and deciding to wear make up for the first time. That high was a bit dashed by a call from Steven Wei saying that the CT scan of the abdomen done last week revealed a small blood clot in her lung. Then came the frustration and fatigue of a 6 hour stint in the ER to get a special lung CT scan. Then the relief of finding out there were no blood clots and no need to receive anticoagulation medication. Then there was anxiety about the final appt with Dr. Vauthey and hoping that he would say she was clear to travel.

The appt with Dr. Vauthey was informative. He talked about the type of cancer Deborah is dealing with and that not much is known about the causes or risk factors for it. He said she would need to come back to Houston every 4 to 5 months for follow up scans. He said she was healing as expected and that the liver was already busy regenerating. He told her she was OK to travel home. So we are set to fly today.  Keep her in your prayers and get set to welcome her home! 

Thursday, December 30, 2010

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! 

Monday, December 27, 2010

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.

Saturday, December 25, 2010

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! 

Tuesday, December 21, 2010

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.

Sunday, December 19, 2010

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.