Obituary and Memorial Service Details

Michelle's Obituary is below. Her body will be cremated and her ashes scattered in the mountains. We are holding a memorial service at 1:00 pm on Saturday, July 10 in Fort Collins, details are at the end of the obit. I am planning to travel to Michigan next week to share a video of the service with my mom who can't travel. I am also tentatively planning an afternoon BBQ at the Phi Kapp Castle on Saturday, July 17 to celebrate Michelle's life with our dear friends in the Detroit area.

Please click the comments link below this post to share your thoughts, memories of Michelle, and any messages for her family.

Michelle McDonough

Michelle passed quietly on July 6, 2010 in the Pathways Hospice Center in Loveland. Bile duct cancer claimed her life after a courageous 19 month battle.

She was born Michelle Lynne Beyer on October 11, 1962 in Holy Cross Hospital in Detroit, Michigan. She grew up in Warren, Michigan with her parents Ron and Sharon Beyer and two younger sisters, Lisa Renee and Kimberly Marie.

During her childhood, her family spent many weekends at their property near Forest Lake, about an hour north of Saginaw. It was there that her love of nature grew and flourished. She loved walking in the woods and picking fresh blueberries.

After her 1980 graduation from Cousino High School in Warren, Michelle attended Lawrence Technological University (then called Lawrence Institute of Technology) in Southfield, Michigan. She studied Mechanical Engineering and Math/Computer Science, graduating in 1984 with a BS in Math and Computer Science. While at Lawrence Tech she joined Delta Tau Sigma sorority and made many life-long friends, including her best friend and future husband, Bill McDonough.

Michelle and Bill were married in Bill’s hometown Trenton, Michigan, on August 25, 1984. In 1989 Michelle gave birth to healthy boy/girl twins, Christopher and Kelly. The family moved to Fort Collins, Colorado in 1994 following the retirement of Michelle’s parents the previous year. They fell in love with the Rocky Mountains after a couple of visits as both a childless couple and later with the twins.

As members of the Christ United Methodist Church faith community, Michelle and Bill helped as part of the worship team for the contemporary worship service for several years. Michelle maintained a close relationship with God throughout her life and was a spiritual inspiration for many.

One of Michelle’s favorite pastimes was to take relaxing walks on the nature trails at the CSU Environmental Learning Center. She developed a love of nature photography and found great peace and relief from stress while watching the deer and birds frolic. She was very creative and enjoyed sewing and various craft projects.

Michelle was employed by the City of Fort Collins for 13 years, where she was a Project Manager and Application Development supervisor. She was very highly regarded by everyone she worked with, particularly the members of the team she led. In 2007 Michelle was recognized as one of the first group of “World Class People” by the city. This honor was bestowed upon 20 of the 1000 or so city employees.

Michelle was diagnosed with bile duct cancer (cholangiocarcinoma) in December 2008. This cancer is very rare, with only a handful of new cases each year and is almost always fatal, usually within 6 months. She was a strong fighter, though, and with excellent care and surrounded by the love of her family and spiritual support from an army of prayer warriors her longevity was nothing short of miraculous. She was able to take a family cruise around the western Caribbean last July and enjoyed a family reunion last Christmas to celebrate her parents’ 50th wedding anniversary.

Michelle is survived by her loving and devoted husband of 25 years, Bill; son Chris McDonough; and daughter Kelly McDonough. She is also survived by her parents Ron and Sharon Beyer, grandmother Lucille Beyer, and sisters Lisa Riley (Greg) and Kim Levine (Lindsey) and numerous nieces, nephews, aunts, uncles, and cousins.

The McDonough family extends warm appreciation to Dr. Robert Marschke and the staff at Front Ranger Cancer specialists, the nurses and staff at the PVH Oncology ward, and Pathways Hospice for their extraordinary care and comfort throughout Michelle’s battle.

A memorial service will be held on Saturday, July 10 at 1:00 PM at the Colorado Welcome Center outdoor amphitheater located just off Prospect Road west of I-25. (3745 E. Prospect). An indoor reception with coffee and cake will follow the service. Please join us to celebrate the all too short life of this remarkable woman.

In lieu of flowers, memorial contributions to assist with Chris and Kelly’s education may be made to the Michelle McDonough Memorial Fund c/o Goes Funeral Care, 3665 Canal Drive, Suite E, Fort Collins, CO 80524.

Rest in peace sweet Michelle

Michelle passed away at 6:45 am MDT this morning.

The Vigil Continues

Michelle continues to rest comfortably since we found the right combination of meds to get her breathing more calm and relaxed. She is sleeping all the time now, but sometimes responds to voice and touch.

The doctor said Wednesday she is proving tenacious and may last several more days. It's hard to say.

Hospice Care Center

Michelle was admitted to the Pathways Hospice Care Center in McKee Medical Center in Loveland (about 25 minutes from our house) on Sunday night. She was essentially unconscious and had moved beyond our ability to care for her at home.

In the wee hours of Monday morning (6/28) she aspirated fluids from her stomach and her breathing became labored, quick, and shallow. Over the course of the day we were able to use medicatins to calm her breathing somewhat and make her as comfortable as possible. The hospice doctor examined her and confirmed that her body is showing all the signs of shutting down, but since she is still so young it is impossible to predict how much longer she will hold out. It could be hours or a day or two.

This morning (Tuesday 6/29) she is comfortable and her breathing is still rapid and shallow, but with little of the laboring and gurgling sounds that were present yesterday. She appears relaxed and comfortable.

This will be my last post until she passes. Thank you all for your prayers and kind thoughts. Your support has been a key source of strength throughout our ordeal.

Prayer Service

Thursday night's prayer service was awesome, very spiritual and heartfelt. In addition to Michelle's family (mom, dad, and 2 sisters), my brother Tim and 12 of our close friends joined us. Many brought small tokens or readings to share, including religious icons, a photo of the sunrise taken on Easter morning from Horsetooth reservoir (just west of Fort Collins in the foothills), and several readings.

Here are some of those readings:

So do not fear, for I am with you,
Do not be dismayed, for I am your God.
I will strengthen you and help you:
I will uphold you with my righteous right hand.
Isiah 41:10

An Excerpt from Henri Nouwen by Robert A. Jonas
Robert A. Jonas is the editor of this collection of writings from the Christian writer Henri Nouwen. Here is an excerpt on faith.

"The Flying Rodleighs are trapeze artists who perform in the German circus Simoneit-Barum. When the circus came to Freiburg two years ago, my friends Franz and Reny invited me and my father to see the show. I will never forget how enraptured I became when I first saw the Rodleighs move through the air, flying and catching as elegant dancers. The next day, I returned to the circus to see them again and introduced myself to them as one of their great fans. They invited me to attend their practice sessions, gave me free tickets, asked me to dinner, and suggested I travel with them for a week in the near future. I did, and we became good friends.

"One day, I was sitting with Rodleigh, the leader of the troupe, in his caravan, talking about flying. He said, 'As a flyer, I must have complete trust in my catcher. The public might think that I am the great star of the trapeze, but the real star is Joe, my catcher. He has to be there for me with split-second precision and grab me out of the air as I come to him in the long jump.' 'How does it work?' I asked. 'The secret,' Rodleigh said, 'is that the flyer does nothing and the catcher does everything. When I fly to Joe, I have simply to stretch out my arms and hands and wait for him to catch me and pull me safely over the apron behind the catchbar.'

" 'You do nothing!' I said, surprised. 'Nothing,' Rodleigh repeated. 'The worst thing the flyer can do is to try to catch the catcher. I am not supposed to catch Joe. It's Joe's task to catch me. If I grabbed Joe's wrists, I might break them, or he might break mine, and that would be the end for both of us. A flyer must fly, and a catcher must catch, and the flyer must trust, with outstretched arms, that his catcher will be there for him.'

"When Rodleigh said this with so much conviction, the words of Jesus flashed through my mind: 'Father into your hands I commend my Spirit.' For us it means trusting in the catcher…'Don't be afraid. Remember that you are the beloved child of God. He will be there when you make your long jump. Don't try to grab him; he will grab you. Just stretch out your arms and hands and trust, trust, trust.' "

We also enjoyed and sang along with a moving rendition of one of Michelle's favorite hymns, "Lord of the Dance".

We closed with a Navajo prayer:

Navajo Blessing Way Prayer
In beauty may I walk.
All day long may I walk.
Through the returning seasons may I walk.
On the trail marked with pollen may I walk.
With grasshoppers about my feet may I walk.
With dew about my feet may I walk.
With beauty before me, may I walk.
With beauty behind me, may I walk.
With beauty above me, may I walk.
With beauty below me, may I walk.
With beauty all around me, may I walk.
In old age wondering on a trail of beauty, lively, may I walk.
In old age wandering on a trail of beauty, living again, may I walk.
It is finished in beauty.
It is finished in beauty.

I want to take this opportunity to thank everyone for all the wonderful messages of support and prayer that continue to pour in. I apologize that I haven't the time to respond to each message individually, but please know that we appreciate every one.

Back Home!

Michelle was discharged from the hospital today and is back home. Hospice had a hospital bed and other equipment delivered, and the hospice consultant met us as we arrived with backup medications and orientation information for their services. Michelle's hospice nurse will visit tomorrow.

We've scheduled a prayer meeting for this THURSDAY at 6:30 PM MDT. Please join us in prayer at 7:00 if you can't make it in person.

The Post I Don't Want to Write

Michelle had laproscopic surgery yesterday to identify exactly what is wrong with her digestive system. The news is about as bad is it gets. The cancer has spread through her abdomen, with thin sheets of tissue attaching to the inner wall of her abdomen, running through and coating the intestines, making it impossible for the muscular action of the intestines (paristalsis) to move the food through her system. For all intents and purposes, her digestive system is completely shut down. This explains why she can't keep any solid food down . The cancer is inoperable and impossible to treat with the current state of medicine.

We met today with a hospice consultant to start the process of setting up hospice care in our home. We will rent a hospital bed, wheelchair, and other equipment and focus all our efforts on keeping Michelle comfortable. She is not expected to survive more than a few weeks.

Once we have her home and settled, I'll post information about the prayer meeting we are planning.

Michelle's parents and sisters are converging on Fort Collins as we speak, and should all arrive sometime tomorrow. Chris has taken a few days off and came down from the mountains to be with us. He'll probably return there on Thursday or Friday. I have taken a leave of absence from work for as long as necessary. Kelly is continuing to work part time at Target (baking!) and still lives at home with us.

Thank you for all the prayers, cards, flowers, and loving messages you've sent. They really help to lift us up in these trying days.

We are so very thankful for God's Grace that has kept Michelle alive and fighting this terrible disease for longer than anyone ever expected. She fought successfully for more than 3 times the mean survival time, and that alone is a miracle. We are very grateful for the extra year we've had to spend together, knowing all the time that the end was approaching.

No Biopsy Yet

The planned biopsy yesterday had to be canceled because the radiologist felt there was not enough tissue to sample and the risk of a bowel perforation was too high. Since Michelle's oncologist was unavailable yesterday, we had to wait until today to figure out a new plan.

When we got back to the room around noon, Michelle's nurse had her morning pills waiting for her. Unfortunately, as soon as the water hit her stomach it and the pills came right back up along with last night's dinner. Michelle rested and took it easy rest of the day and dined on Campbell's Chicken Noodle Soup.

Today she wasn't able to keep her breakfast down, and our concern and focus turned to her persistently queasy stomach. It's been several over a week since she's been able to keep solid food down and go for more than 36 hours without vomiting. We're growing concerned about her ability to get nutrition.

Dr. Marschke was in today and laid out the new plan. He explained that he, the surgeon, and the infectious disease doctors concur that the main concern now is that Michelle may have a full or partial bowel obstruction keeping her from digesting any food. The next diagnostic step will be an exploratory laparascopy to get a close look inside her abdomen at the areas that look suspicious. The surgeon will also evaluate options for addressing whatever he finds and investigate the possibility of putting in a feeding tube below the blockage.

I'll post an update when I know more.

The Plot Thickens, Too

Michelle's condition hasn't changed much in the last few days. She's still in the hospital and still on the same dosage of pain medicine. This is contributing to the mixed picture of her situation and has the doctors scratching their heads a bit.

To recap:

• Michelle had out of control pain and a fever at home on Saturday.
  
• We gave her Advil for the fever which brought her temperature down right away.
• We tried the oral pain meds we had on hand, but we couldn't get her pain under control and decided it was best to go to the ER.
  
• Initial blood tests revealed elevated white blood cells, which have been coming down steadily since then.
  
• The fever hasn't returned.
• Detailed review of the CT scans from Saturday show thickening of the tissue that enclosed the abdominal cavity and pelvis, the peritoneum, particularly around the part of her large intestine where it meets her small intestine, called the cecum.

All these facts point towards bacterial peritonitis, but several other factors don't fit with that diagnosis.

• The cultures of her blood and peritoneal fluid have not returned any results.
• She's not getting better. By this time, most patients with bacterial peritonitis are bouncing back and showing reduced pain and increased energy. Rapid improvement is the rule, but Michelle's pain hasn't abated at all, and she's still pretty wiped out.
• Her bowels aren't moving, although most patients receiving the high amounts of antibiotics she has typically have diarrhea.

After consultation with the infectious disease specialist, Michelle's oncologist Dr. Marschke believes a biopsy of the thickened peritoneum is the best course to pursue next, to see if there has been metastisis (spread) of cancer. All of the above symptoms seem to be pointing in that direction, although nothing is for certain. This test requires a needle biopsy which the interventional radiologists can accomplish with the aid of ultrasound. These are the same guys and similar tools that are used for the peracenteses that Michelle has endured 8 or 9 times already.

Speaking of which, the fluid has been building rapidly in her abdomen and it will be time for another peracentesis tomorrow or Friday. We suspect that they may do both procedures at the same time.

Michelle's spirits are about as good as can be expected. She's heavily medicated for the pain, which is making her fairly groggy and sleepy. The antibiotics are taking their toll as well, so she doesn't have a lot of energy. In spite of all that, she's not complaining and has been very patient with the nurses and the sometimes nonsensical hospital rules.

I've been able to get some work done in the mornings and here in Michelle's hospital room on my laptop, and the kids have been visiting when schedules permit. Chris left yesterday for his summer job, he's a medical officer at the Boy Scout camp in the mountains about an hour from home.

Memorial Day Update

Michelle slept a little better last night, but still hardly at all. The nurses had to hang a new bag of antibiotics every hour, which is obviously disruptive to sleep. Her pain is under control.

We spoke with both the oncologist and the infection disease specialist and got a small update. They expect Michelle to be in the hospital at least 2 more days. It will take that long for the cultures to grow from her blood and abdominal fluid samples taken yesterday.

Her white cell count has declined a bit which may be a sign that the infection is abating somewhat. Mostly we're in a wait and see mode, while trying to keep her comfortable.

Thank you for your prayers and all the kind words we received in response to yesterday's post.

Up, Down, and All Around

Michelle was admitted to the hospital around midnight last night for severe abdominal pain and an apparent abdominal infection. Her pain is under control and we're waiting on the results of several cultures to figure out what's going on. I'll use the blog to keep everyone posted on her progress at least daily, so please check your email if you want updates.

Here are all the gory details since the last post on May 5:

We met with a surgeon, Dr. Collins, on Friday May 7. He's the same surgeon who installed her IV port in January 2009. After consultation we decided to go ahead with surgery to implant an abdominal-vascular shunt, called a Denver Shunt, to carry the ascites fluid from Michelle's abdomen through her left jugular vein and into her Superior Vena Cava, one of the primary collector veins that returns blood to the heart. The shunt consists of a 4-inch long perforated tube that resides in her abdomen, tubing that is tunnelled just under her skin up the left side of her trunk, and a small manual pump that sits on top of her lower few left ribs.

The surgery on Monday 5/17 was successful and Michelle came through with flying colors. She stayed in the hospital overnight for observation and was released the next morning.

We were surprised to learn from the Physician's Assistant who wrote her discharge orders that she would have to operate this manual pump to move the fluid. It turns out that while there is some automatic transfer of fluid from abdomen to bloodstream, this only occurs when she is laying down, and she will always have to operate the pump to stay ahead of the fluid accumulation.

The pump only moves 3 cc (ml) of fluid at a time, and her body has been retaining fluid at a rate of up to 3.6 liters (3,600 cc) per week. As a result, she needs to operate the pump 100-120 times per day just to keep up. Now that her incisions have healed quite a bit, it is not painful but during that first week after surgery it was agonizing.

As the week progressed, she experienced normal pain associated with the healing incisions, but the fluid gained rapidly. We saw another doctor in the surgeon's office on Friday who recommended a paracentesis immediately and to see Dr. Collins on Tuesday, his next day in the office. What a disappointment! We had hoped that the surgery would mean an end to paracenteses.

In the middle of all this mess, one of Michelle's best friends from college, Gay Todd, spent the weekend with us. She flew in from Michigan Thursday night and stayed until Sunday morning. It was wonderful to spend some time with her, and was a welcome reminder of how much our friends still care for us.

They tapped about 1.5 liters on Monday and we saw Dr. Collins on Tuesday. He confirmed that we were operating the pump correctly and that it wasn't blocked or malfunctioning. It was then he gave us a better explanation of how much fluid it moved and how much pumping was necessary to keep ahead of the retention. It's hard to judge how much fluid will move through the shunt on its own because there are many variables that affect the process. Essentially Michelle needs to pump 30-40 times in the morning and at night and see if she's able to keep ahead of the accumulation.

Tuesday afternoon, Michelle vomited. Not unusual by itself, she has had occasional bouts of nausea for the last several weeks, even before surgery, but then she upchucked again on Wednesday. On Thursday she couldn't keep any solid food down so we called the Oncology doctors. They recommended we use all the anti-nausea drugs in our arsenal and head to the Emergency Department if we can't get it under control.

Friday was a little better, Michelle was able to keep some food down, but by mid-day Saturday she had a fever and her abdomen had become very painful. We weren't able to get ahead of the pain and decided to take her to the ER. Her white cell count was elevated and an abdominal CT scan indicated her colon was inflamed (colitis), so they decided to admit her.

This morning, the surgeon Dr. Collins stopped by and told Michelle that they wanted to do another paracentesis so they could examine the fluid for infection. If the fluid is infected, the pump is infected and will have to come out. He also explained that the shunt is not a replacement for paracentesis, but that it should reduce the frequency. Given that we had already reached the point of almost 4 liters of accumulation in 7 days, it wouldn't have been long before twice weekly procedures would be needed. (Not an exciting prospect - despite local anesthetic the procedure is quite painful.) Hopefully we can keep it to every other week or longer, but time will tell.

They removed 2.5 liters of fluid during the paracentesis and sent if off to the lab for cultures.

It's about 1:30 Sunday afternoon now, and Michelle just finished her "full" liquid lunch. This was upgraded from the clear liquids she had for breakfast; she had some nasty tasting cream of chicken soup and a little bit of vanilla ice cream for dessert. The next consultation today will be with her pain doctor to adjust the dosing level of her intrathecal pain pump so she doesn't need quite so much IV pain relief. As you may recall from last June, it was high doses of IV pain medicine that led to complications that kept her in the hospital for 2 weeks.

As I said up top, I'll try to post updates at least daily until Michelle comes home. In the mean time, please keep us in your thoughts and prayers or at least send some happy thoughts our way. We can use all the positive energy we can get.

Outlier or Miracle?

Yesterday Michelle and I went to see her oncologist, Dr. Marschke. We learned a lot and got some particularly good news about the doctor's expectations for Michelle.

The main topic of the moment was ascites: fluid accumulation around Michelle's intestines. As you probably have read, about every 10-12 days for the last several weeks we've had to take Michelle for a paracentesis to draw off the accumulated fluid. She had procedure #5 this past Monday - they withdrew 2 liters of fluid, about average so far.

Laboratory analysis of the fluid has shown that it's not due to infection, and since it doesn't contain any malignant cells which would indicate cancer as the source, it's a something of a mystery where the fluid is coming from.

We did learn a little more about what to expect: once it starts, it rarely stops. Dr. Marschke told us to expect the need to have fluid relieved to occur more and more often, up to twice per week. We discussed a couple of options to drain the fluid without paracentesis, and have an appointment with a surgeon on Friday to explore the more promising option.

Here's the good part. We asked Dr. Marschke about Michelle's life expectancy. He said that first we have to understand that Michelle's survival so far is amazing. She has lived 5 standard deviations past the mean life expectancy for patients with cholangiocarcinoma (6 months). That means she is an extremely rare case, the extremest of outliers.

In my book, that's a miracle. Here we are 18 months after Michelle first fell ill, and she's still going strong. Dr. Marschke went on to say that in addition to surviving well past any reasonable expectations, the has been no evidence of cancer activity in her body for many months now. The tumor marker, antigen CA19-9, has been bouncing around the 400-600 level for the past 4 months. She's still tolerating the chemotherapy treatments well. She has experienced no fevers, unexplained bleeding, neurological impairment or any other common side effects.

The bottom line: he expects Michelle to live many more months, perhaps even 1 or 2 more years.

Wow.

Call it a statistical anomaly. Call her an outlier. Call it good luck. Humbug!

Prayer. Works. Hallelujah! Amen!

Please understand that heading into this appointment, I was prepared to hear the worst. I was half expecting that the ascites were a sure sign that the cancer was on the march, or that her organs were breaking down, or that something really, really bad was happening. I never expected him to tell us this. I'm still floored.

And ready to make some plans.

You see, when you've been living day to day for as long as we have, you kind of stop making long term plans. When you never know what nasty surprise is coming just around the next corner, you start to get skittish about planning something for next month. Or next week.

Well, I'm here to tell ya I'm doggone sick and tired of living that way and it's way past time to do something about it! So we're going to Vegas, baby! at the end of this month.

And then for the 4th of July we're going to San Francisco, Seattle, or Vancouver.

And it'll be NYC or Washington DC for Labor Day, and maybe a 4 day cruise when the weather starts getting cold again.

And we'll deal with what happens when it happens instead of sitting around waiting for the other shoe to drop.

In other news...

Michelle's voice still hasn't returned, so she has an appointment next week with the Ear, Nose, and Throat doctor to explore options for fixing her paralyzed vocal cord.

Back Home

I had a great time in Phoenix visiting my Mom and Dad. I was there a week. We went to see 2 movies, Date Night and The Bounty Hunter. My Mom and I played 3 games of scrabble and numerous games of cards. We also got my Dad to play some cards with us. I got to visit my Grandma and Aunt Linda and Uncle Rich. We took Grandma out to dinner. I enjoyed a lunch with my Mom's girlfriends. It was alot of fun. My Mom and I did a little shopping. I felt pretty good much of the week.

Before I left for Phoenix I had another paracentisis in which they removed 3 half liter bottles of fluid out of my abdomen which is a good amount. It had only been a week and a half since the other one when they removed 4 and a quarter half liter jars. I hope I can go longer this time before having to have the fluid tapped.

I have chemo #33 on Tuesday. My friend Karen has been coming to keep me company. She is going to be there again tomorrow.

I have so many special friends.
Have a great week.
Michelle

...and More Fluid

I had another paracentisis again today after having an ultrasound yesterday of my abdomen that showed moderate amounts of fluid in my abdomen. We got more fluid today versus the last one a couple of weeks ago. Today we got 2.275 liters (imagine a 2 liter bottle of coke,though it is more the color of mountain dew) where the last one we got 600 milliliters. It is a relief to have the fluid drained off. My abdomen was rigid, I couldn't eat as much, I was short of breath, along with just being uncomfortable.

I am going to Phoenix the week of April 10th to visit my Mom and Dad. My Mom is enrolled in some clinical trials for her cancer so they won't be going back to Michigan this summer, so I decided to go out and see them in Arizona. We will have a nice little visit.

My voice is still only a whisper. I am doing speech therapy, but haven't seen much progress.

Have a great rest of your week.
Michelle

It's all about Fluid

On Tuesday, March 9, Bill and I met with the oncologist. We talked a little bit about the pain that had started back up though it wasn't hurting that day. The doctor suggested we might want to do another thoracentsis if the pain comes back and it wouldn't be unheard of doing one every 6 weeks. After that I got chemo. Bill stayed with me and we played a little cards.

Thursday I woke up and was hurting more than usual. We talked to the oncologist and he suggested we have a thoracentsis done that day to drain the fluid from my lung cavity. That went fine except my belly was pretty rigid. We knew there was fluid in my belly from previous CT Scans and we knew it was increasing.

The next day it seemed the rigidity went down a little,but was still there. Bill called the doctor again. He suggested we have a peracentsis done that would drain the fluid out of my belly. So we did that on Friday. So after having fluid drained out of my back and my belly I am feeling a bit beaten up, though I am feeling okay.

What a Beautiful Day!

Today is just an awesome day outside. It is in the low 60s, partly sunny with a quiet breeze. Bill and I took our cat, Kira, to the vet. She needs to have her teeth cleaned and needs to lose a couple of pounds. Otherwise, she is doing okay.

I got good news yesterday. My CA19-9 is down to 522. It was 606 a couple of weeks ago. This is the first time it has gone down since October 2009. Let's hope the trend continues.

My voice is still only a whisper. I went to see a speech therapist. She gave me some exercises to help my right vocal chord help compensate for my paralyzed left vocal chord. Up until now, it hasn't made an impact on my voice.

On Tuesday, March 9th, I have an appointment with the oncologist to discuss treatment options and for chemotherapy # 32.

Thank you for all of the prayers. Please continue to pray that the CA19-9 decreases.

Have a good weekend.

Michelle

Test Results

This was another one of those weeks. On Monday Michelle had a CT scan of her neck, chest, abdomen and pelvis. The neck and chest scans revealed no tumors or masses that could be pressing on her laryngeal nerve and causing the vocal cord paralysis Michelle mentioned in the blog last week.

This is great news! Tumors would have meant surgery and more complications. It leaves us without a complete explanation of the paralyzed vocal cord, but we didn't want to hear about big tumors.

The CT scan also showed that the fluid in her right pleural cavity looks unchanged in volume from the January 4 scan, which means that all the fluid drawn off 2 weeks ago is back. That's a little frustrating.

The ascites described in past CT scans and the last PET scan is (are?) increasing. Ascites is the technical term for fluid gathering around (outside) the intestines. When there gets to be a lot of it, the result is typically significant bloating, but Michelle has yet to experience that.

Michelle's blood work late last week showed her white cell counts were quite low, but they rebounded quickly and she was well within the treatment range and so was able to receive her scheduled chemo treatment on Tuesday. Huzzah! This result means that she does not need to resume the problematic Neulasta injections. This is the drug that increases white cell production, but at the cost of bone pain. We blame Neulasta for exacerbating the pain Michelle experienced just before New Years that led to the procedure to remove fluid from her chest, so stopping it is a good thing.

Also on Tuesday (actually before chemo), we met with Dr. Medgesy, one of Dr. Marschke's partners and a top oncologist in her own right. She reviewed the test results with us and helped to clarify a few questions. It was interesting to hear her slightly different perspective on things, although she was in complete agreement and consistent with what Dr. Marschke has told us. One clarification I found interesting was regarding metastasis.

Metastasis literally means "in another place" and refers to the spread of cancer from the place of origin to another part of the body. Mutated cells (bile duct cells in Michelle's case) move around the body and attach to other organs: liver, vertebra, intestines, lungs, etc. Once in place, they begin to multiply and create havoc in their new home, but they don't change (for example) liver cells into mutated liver cancer cells. They retain their original identity, so there is a colony of bile duct cancer cells growing on the liver, and it is referred to as metastatic liver disease and not liver cancer. This is true of all types of cancer.

So what, you may ask. Well, the point is that the cancer started in cells that are only 1 or 2 cells in thickness rather than a large organ like the liver. The cancer in the bile duct was undetected by every scan performed to date, and was only diagnosed under microscopic examination. This means that the spread of the cancer may be equally difficult to detect.

Last weeks blood work also included the antigen/tumor marker CA19-9. This number was almost 8,000 in January 2009, down to 56 (one point above "normal") in May, and has gradually increased since then. The current value is 574, compared to 425 about a month ago. This is not a good trend, but at least it's not skyrocketing out of control, which would indicate the chemo treatments are having no effect at all. Dr. Medgesy indicated that there is still no clear indication that the chemo drug (Gemzar) we are using has lost effectiveness. Since Gemzar is still the best tool we have for treating cholangiocarcinoma, we'll continue on this course.

On the human side, Michelle is feeling pretty good except she still can't speak much above a whisper and tends to aspirate (inhale) fluids due to the vocal chord paralysis. She has had no recurrence of the pain in her side, and her other pain is under good control.

The doctor wasn't much concerned about inhaling fluids, because our lungs can cope with it. If she were aspirating food particles, that would be a greater concern: fluids do not lead to pneumonia, but food particles do. At this point the strategy is to proceed with the speech and swallowing therapy scheduled for next week to teach Michelle how to compensate for the vocal chord.

On the home front, just before we left for the doctor's appointment on Tuesday morning, we discovered our hot water tank had selected that moment to attempt basement domination and released it's water all over the floor. We caught it in time and got the water shut off and successfully averted catastrophe. (Score: water heater 0, basement carpeting 1.) A quick review of the magnitude of the water heater replacement project and the cost of having a pro do the job convinced me to let the professional handle it. I'm glad I did. Given that it took him 4 1/2 hours and 2 trips for parts to get the job done and it typically takes me about 4x as long to do the same job, it was well worth the cost. I had added a second water heater about 8 years ago when the kids were teenagers, and let's just say not all my work was up to code. Everything's kosher now.

A couple of prayer requests:

Dr. Marschke had to leave town suddenly for a family medical emergency. Apparently his mother is quite ill and they are concerned it may be cancer.

Dr. Brandon (Bill's therapist) also had to leave town due to a death in his family related to the snow storms back east.

Our long-time optometrist has reduced her practice to the CSU medical center exclusively, due to the sale of the office where she saw her non-student patients. When I attempted to contact her at CSU I was told she was on indefinite leave due to a family medical emergency.

Thank you all for your continued love and concern for Michelle and especially for your prayers. God Bless

Bill

Shhh !

Tuesday, January 19th, was the thoracentesis. By Thursday I was getting hoarse. All weekend I couldn't speak above a whisper. On Monday, January 25, Bill came home to take me for a chest x-ray to see if everything was okay with my lungs. Was I hoarse because I couldn't move enough air out of my lungs? I got some bloodwork and then went to the oncologist's office. The x-ray showed some fluid reaccumulating in the right lung cavity, but nothing else. My lungs looked good. After talking to the Physician's Assistant for a while, she decided I should see an Ear, Nose and Throat doctor to see if there was anything with the laryngeal nerve. Luckily he had an appointment open Monday afternoon. So we ran over there. He put a small camera down through my nose into my throat and could immediately see my left vocal chord was paralyzed. There are 2 main causes of paralyzed vocal chords in my case. It could be a virus. If it is a virus, it could last up to 6 months. It could also be a tumor on my laryngeal nerve. So next step is to get a CT Scan of the nerve to see if there is a tumor. This is scheduled for Monday, February 8th. One side effect of a paralyzed vocal chord is a greater chance to aspirate things into my lungs. Since my immune system is compromised, it would not be good to aspirate something into my lungs and it turns into pneumonia. So I will be going to speech/swallow therapy. Things are a little frustrating and pretty quiet since I can't speak above a whisper.

On Tuesday I had my 27th chemotherapy. It was uneventful. After all of the running around on Monday and chemo on Tuesday I was exhausted Tuesday night.

Our next prayer meeting is Monday, February 1 at our house. Please join us if you available.

Another Anniversary of Sorts

Tormorrow is the one year anniversary of starting chemotherapy. I have done 26 doses of chemotherapy in the last year. It is interesting how it has changed. I am on the same drug, but was doing a higher dose in shorter intervals at the beginning of the year than what I am doing now. My bloodwork is lower between doses requiring a shot to bring them back up.

Today I had a thoracentesis where they drain fluid from your lung cavity. Everything went well. They drained 600 ml of fluid. Think of one of those half liter water bottles is 500 ml. It would be 1 water bottle and 1/5 of a 2nd water bottle. This should help the pain go away hopefully. Keep your fingers' crossed and the prayers coming.

Thank you for all your prayers and support.
Michelle

Happy New Year

We had a great Christmas. My parent's 50th Wedding Anniversary is in May. Christmas was the only time when all of the kids were out of school at the same time. So my sisters and parents decided to get together in Colorado. My parents arrived December 23rd while we were having a snow storm. They drove up from Phoenix. Both of my sisters flew in on Christmas day. One from Detroit, Michigan with their daughter and one from Los Angeles with their 2 boys. We had a nice Christmas morning opening presents with my parents. We took my parents to the Melting Pot Restaurant for their anniversary. It is a fondue restautant. Both my sisters' kids and Kelly went skiing up at Snowy Range in Wyoming on Monday. Everybody left on December 30th. It was a nice get together.

All during the visit I was having pain. On Tuesday, December 29th I had my 25th chemotherapy. I also got my shot on Wednesday to boost my white blood cells. The pain it caused Wednesday and Thursday was horrible. I was ready to go to the ER. It was hard to get a hold of anybody with Thursday being New Year's Eve. I did reach my doctor and had an xray done. Monday I have a CT Scan. I am feeling better today.

I wanted to wish everybody a happy new year.