Current Patient Profiles
Marlene Aza - Linitus Plastica, a rare form of gastric cancer
NOV 18, 2008
Subject: Marlene's update - Light at the end of the tunnel?
And we don't want to hear anything about trains coming the other way!
At this moment, Marlene is still within the confines of Deaconess Hospital. Although the last week has been without major complication, progress has been slow. As mentioned before, a couple of bacteria had been detected in the draining fluid that required specific antibiotics and semi-isolation for the protection of other patients that could have weakened immune systems.
The delays to the projected discharge were becoming harder for Marlene to deal with than the actual physical challenges.While the concerns and the issues to be dealt with were discussed, her doctors and nurses were understanding of the impact on her spirit. We do appreciate that Deaconess has staff to address these issues and Marlene has had visits from the Palliative Care Unit daily.
Marlene was still on oxygen at the start of the week as her oxygen saturation levels would drop when the O2 was removed. Mid-week another CT scan was taken and the next day she had a procedure which removed about 1-1/3 liters of fluid from her left lung. Marlene was amazed that there was no discomfort to the procedure. A few hours later, we were talking and realized that she had taken off her oxygen when we went for a walk and had forgotten to put it back on. Her breathing (much improved after the fluid removal) seemed good so we left the O2 off until the next time vitals were taken. From that point forward, her O2 saturation has remained well above 90%. Count one less tube!
Thursday, Mar had an x-ray study done as the doctor was concerned that the draining fluid could be indicating that there was another leak in the intestinal wall. We were delighted to hear that the results did not indicate any leak present.
Friday during the daily doctor visit, Dr. Holbrook confirmed the test result but indicated that there could still be a small leak that did not show, but if that was the case, it should be small enough to be able to heal on its own. He removed 1 of the 3 remaining drain tubes (another benchmark!),
At that point Mar started heavy negotiation for a transfer to home. When the doctor indicated that it could be an additional 1-2 weeks until the fluids stopped draining, it really pulled the rug for Mar emotionally. While the doctor's concerns were appreciated, as Monday marks the 2 month point since the initial surgery, it was hard to accept.
The doctor did offer to have her switched back a larger room, which was appreciated. Marlene is now in Room 1111. Her direct phone # is 509-473-3141 or cell 831-234-8775.
Marlene continued discussion with the on-call surgeon and Infection Control doctors and a plan has been hatched. One of the antibiotics is reaching the end of its run in a day and the other is being administered once/day. The antibiotics and the flushing of the drains could be handled by a combination of Visiting Nurse and Gary. The doctors agreed to release Marlene to home care with 2 stipulations:
1. Marlene is to have another CT scan Monday to check for any other pockets of fluid accumulation\. Please hold good thoughts and prayers that no new issues are discovered, and 2. Marlene needs to demonstrate that she is able to eat sufficient quantities to sustain herself.
Late this morning, Marlene was disconnected from IV pain medication. This afternoon, she was disconnected from IV feeding. She is now connected only for short periods to have the antibiotics infused. This evening we went for our first walk without having to bring along an IV pole. Mar did eat considerably more on her own throughout the day.
We will greet tomorrow with an eye on her calorie count and high hopes for the CT results. With the logistics that need to be coordinated, it will probably be Tuesday or Wednesday at the earliest, but having that target has improved Marlene's spirits considerably.
As always, thanks to you all for the love, support, prayers and good thoughts.
Gary for Marlene
OCT 27, 2008
Hi Eric,
Marlene is at Deaconess Hospital, Spokane WA.
Marlene was diagnosed with linitus plastica, a rare form of gastric cancer. It is particularly insidious as is does not throw off any markers and is not detected on CT, MRI, PET, or CEA tests. It is a diffuse cancer and as it does not form dense tumors, it does not show on X-rays or the other scans.
I understand a common name for it is "leather bottle stomach" which gives and indication of its effect as it progresses. As with Marlene, it is usually not able to be diagnosed until it has reached Stage IV.
Marlene has been blessed by our move to this area as we believe that both her oncologist and surgeon are the best that we could possibly have on her team. Her oncologist, Dr.Danko Martincic (chosen because he has an unusual name as did her CA doctors) shared with us that his mother was taken by linitus plastica and from this understandably has a familiarity with, and passion for fighting this disease.
Her surgeon, Dr.Ryan Holbrook, has been recommended from several sources as one of the best gastric cancer surgeons and has been involved with the HIPEC (formerly referred to as IPHC) process for over 10 years.
As Dr. Danko pointed out recently, "Marlene, none of your treatment has been standard protocol. The standard protocol for Stage IV linitus plastica is do nothing." The biggest obstacle initially was finding doctors that would give her a chance to fight this cancer.
Famous quotes from the initial stages of Marlene's fight:
From a surgeon consulted at the Dorothy E. Schneider Cancer Center: " Well, if it has taken them 15 months to diagnose this cancer, you have already outlived the life-expectancy of this disease."
From the 1st surgeon consulted: "This is a very scary cancer. We don't see it very often." Marlene's response: "If it's scary to you, how do you think I feel!"
From her 1st oncologist during the initial chemo rounds: " I don't want to give you any more chemo. I don't think it is doing you any good. Why don't you just go home and call us when it gets really bad." (Subsequent tests showed that cancer had been significantly reduced by the chemo.)
By the consulting surgeon at UCSF: (After Marlene questioned his opinion that the lymph nodes were involved, as prior doctors did not believe they were involved) "Don't tell me what the other doctors have said. That will only confuse our conversation. You came for my opinion and I am certain that the lymph nodes are involved." He then told her she was not a candidate for surgery but would be referred for chemo. When Marlene asked, "So we do the chemo, the cancer goes into remission, will that prepare for the surgery to be reconsidered?" The surgeon turned to her and said, "We aren't preparing you for anything. This cancer is going to kill you." (Surgery in March 2007 showed that the chemo had been effective and that the lymph nodes were NOT involved.)
The list goes on, and I am sure you and any others can add to the list. Perhaps we should put together a compilation and have it published.
Best regards
Gary Bowe
For Marlene
OCT 21, 2008
Oh my goodness. Where has September and October, Have I missed you all!! There is no internet connection in the hospital, but Gary went by Verizon and get whatever was needed to set me up, so hopefully I can send and read emails soon.
Gary has saved everything that you have sent us and I intend to read each one when I am feeling better. Now lets fill you in on the past few days.
Erika flew in and surprised us a week ago Wednesday,September 15th. What a delight to have my children around so much I just regret that I don' t remember much from a few weeks ago. These surgeries I feel have really set me back, but hopefully we'll get to the bottom of all the abccesses, infections and move forward with the chemo.
I have had anywhere from 7-3 drains in my belly to drain fluids . On my right side (where I have been tellng Dr's for months it HURTS) the color and consistency of the drainage has been worrisome by all and I'm beginning to feel pretty sick. It looks like tomorrow afternoon, Oct 21 Dr. Holbrook will go back in again and open up the abdomen/pevis areas. He will deal with the leak and rinse and see if he can clean up the area once and for all. It will be my 3rd surgery since 9/17.
I will admit to not knowing exactly what the first surgery would find---but I've always been such an optomist. You can only imagine my disappoint when Gary shared the surgeons findings with me. I just couldn't accept that that it had spread so much in such a short time. But since I was so sick, I was able to keep my head pretty much buried...hoping that when I surfaced again, things would be just fine. I developed pneumonia, could not get my blood pressure to stabiize and found I had allergies now to medications I had used in the past with no problem.
I did think of all of you so often. No matter how rotten I felt, the memories of the image of your faces, the memory of the sound of your voice, although sometimes difficult to form the shape, would always end with a smile.
I believe I met some more "angels" on this journey. Most of the time only I could see them, but after awhile, I think Gary felt their presence too ...sometimes as least. This setback and probably put most of our fall travel plans on hold, but we will be here. Come visit us. We'd love to see you.
I will stop this for now. I wanted to get this out to you before my surgery tomorrow afternoon. Gary is set up to send out the updates for awhile. And I have not read any of your response. I have over 600 to read. You all know how much I enjoy my email connections with people. So for me to not touch my computer for over 34 days, I must have felt awful..
Hugging you all really tight right now.
Love
Marlene
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