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It was a mighty battle, even after she was no longer consciously fighting it. After struggling through the night, Marlene gave a couple of gentle sighs and left us for some final peace at 8:45 a.m. She was surrounded in love all through the night and in her final moments. We both continue to thank you all for your love, support and prayers over the past several years. We will carry you in our hearts forever. We will let you know as arrangements are figured out. Erika, Krista and I were discussing how strange it is to reach a moment that we have been preparing for for months....and to feel so totally unprepared. Much thanks and love to you all, |
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I figured that I had better get out a quick update as I know many of you are anxious to hear how Marlene's surgery went. I had been waiting until today so that I could have the benefit of input from the doctor after the weekend and hopefully to have the situation stabilize to some degree.
The surgery happened Saturday morning. Friday her surgeon already had 2 complex surgeries scheduled and one ran considerable longer than expected, so the delay was necessary. Marlene said that she would rather he had a good night's sleep before operating on her anyway. ;-)
The surgery lasted about 2 hours with another 1-1/2 following in recovery. The surgeon said that he was able to locate the leak, which was about 1/2" long, and both stitched and glued the tissue to hopefully complete a repair that will hold up over time. He said that the majority of time was spent cleaning up the abdomen to remove the residue from the leakage that had been occurring.
The hope is that a successful closure will allow Marlene to break the cycle of infections, blood transfusions and hospital stays that have been the norm over the past several months. While we don't want to be too aggressive in setting goals, there is the hope that the repaired intestine will allow Marlene to at least reduce her dependence on the IV feeding (TPN) by being able to eat solid food once again.
The plan this time is to take things very slowly to not stress the repair and give it the best chance for success. Mar had been limited to ice chips and mouth swabs over the weekend. She was able to try some small quantities of juice today.
The anesthesia and pain meds kept Marlene pretty sleepy over te weekend. This morning I walked in her room at 7:00 am she was sitting there reading a book. She was awake pretty much all day. The pain meds do cause a bit of "daydreaming" but that seems to be lessening. She was out of bed and into a chair for a period of time and will probably start walking on Tuesday.
They will be doing another CT scan in the next couple days to check for fluid accumulations in both the abdomen and lungs. Hopefully these will look improved and the chest tube will be able to be removed.
The biggest challenge may be holding Mar back to stay on the "slow and easy" programs because as she reminds us all several times a day, SHE WANTS TO GET OUT OF THE HOSPITAL AND GO HOME!
Thanks for the contined prayers and support.
Love,
Gary for Marlene
JULY 30, 2009
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Marlene has not been having an easy time over the last week. The drain they put in during surgery on the 11th was only draining minimal amounts while she was still having a lot of seepage around the drain. In addition, she had been accumulating some fluid in her lungs.
Last Thurs they drained 1-1/2 liter from left lung, Fri 600 cc from the right. This helped her breathing considerably, but she was still needing oxygen assist. Saturday, when she stood up, the drain tube fell out completely. They decided to wait until a CT scan on Mon to decide whether to put it back in.
Before that could happen on Monday, the fluid that had apparently been accummulating burst through into the incision and started draining itself all over creating a tremendous mess for several hours until the flow reduced. The decided to go ahead an put on the "wound-vac" to try to both drain the fluid and see if they could get what was now obviously a continuing leak to close.
We have been watching closely to be sure that Mar did not have a recurrance of the broken blood vessels as she did last fall. So far so good on that.
Yesterday, Wed., she was still having difficulty breathing so another CT was done which showed that 1) most of the abdominal accumulation had drained, and 2) there was some fluid remaining in primarily the left lung. It was decided to install a drain tube into the lung to drain both the current and any continuing accumulation.
After returning from the procedure and a frustrating amount of time for the floor nurses to get their hands on the supplies needed to connect the drain to the vacuum system, it was connected. However, not a single drop drained through the tube. After being checked over a couple times, everyone was scatching their heads and surmising that the tube must have gotten plugged or shifted position. It was anticipated that decision would be made this morning as to flushing or repositioning the tube,
Marlene seems to have this knack for starting things rolling before the normal decision process happens. This was triggered this morning by her suddenly having difficulty breathing and having her oxygen levels begin dropping. It became critical enough that the "Rapid Response Team" was called in. Assessments were quickly made, x-rays taken and she was being prepared for a transfer to the ICU. Her surgeon was on the floor and said he would schedule to operate to both fix the apparent continuing leak and insert a different chest tube to resolve that issue.
While preparation were being made, the floor nurse finally noticed that when the vacuum system was connected, a "dead-end cap" (plug) was not removed from the chest tube. For the better part of a day, the suction had been drawing against a solid plastic cap!!!!! Removing the plug resulted in a full liter of fluid draining within about 5 minutes. Not surprisingly, Marlene's breathing and oxygen levels quickly improved in the same time.
The ICU transfer was cancelled and the pace returned to more normal. At this point the surgeon still is anticipating performing the surgery to once again try to resolve the intestinal leakage. As of this moment, it looks like the surgery will be scheduled for tomorrow.
At one time, which seems long ago, roller coasters used to be fun....
Thanks all for your continued prayers and support.
Love to all,
Gary & Marlene.
July 10, 2009
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Hello to all,
This is Gary for Marlene. It has been quite a while since I sent an update as Marlene has preferred to handle them herself while she was able. Unfortunately, it is time to ask you all to fire up those prayers and good thoughts once again.
Marlene has been on a repeating cycle of infection issues ever since her surgeries in Sept & Oct. Unfortunately, the two intestinal leaks keep feeding pretty nasty fluids into her abdominal cavity. Infections develop, antibiotics are started, and after a week or two she is feeling pretty good. Once the antibiotics are completed, after a week to 2 weeks, the infections start building again. The concern has been that sooner or later, the antibiotics will cease to be effective.
Today, Marlene received a call that the lower leak/abscess appears to have worsened. The choices were to either attempt to place a drain that, due to location, would be uncomfortable and possibly unsuccessful, or to attempt to make the repairs surgically. While surgery has not been on the table in the past several months, it appears to be the best option at this point.
The drain would not be a "solution", only a temporary improvement. The only way to get long-term, significant improvement is by eliminating the leaks themselves. The hope is that in the 10 months since the heated chemo treatment, the intestinal walls have strengthened enough to make a successful permanent repair. Eliminating the leaks opens a number of possibilities including being able to EAT again and potentially to have chemo treatments, if needed.
While the decision was difficult and a shock to face this morning, Marlene is trying to get her game face on and be as tough and optimistic as she is known for. She, of course, is hoping that you, her team of angels, will be there along with her to give her the strength to once again fight the tough fight.
Her surgeon Dr. Holbrook was scheduled to be on call this weekend, so Marlene has been admitted to Deaconess Hospital (Rm 1029, direct line 509-473-3029) and she does have her cell phone with her. Surgery is anticipated to be tomorrow or Sunday. I will send further updates when we have more specifics.
Love to you all,
Gary & Marlene
NOV 18, 2008
Subject: Marlene's update - Light at the end of the tunnel?
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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,
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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
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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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